Category Archives: People touched by Burkitt’s

Doug’s Story

 

I was diagnosed with BL (stage 4) in October 2016   (58 years old).  PET on January 13, 2017 proved in remission.

My symptoms started in the beginning of August 2016 with lower jaw pain then to a numb lower lip. Jaw pain increased to excruciating pain. Doctors thought I had trigeminal neuralgia. I suffered through these episodes. Then I developed middle back pain shooting down my left arm causing numbness and limited movement of my fingers. Doctors thought I had a pinched nerve. I explained to him that I was waking in a pool of sweat, I felt like a had the flu. Doctors said a pinched nerve would do that. Finally after suffering for over 2 months I loss movement of all fingers on my left hand. Back to doctors, he then called for an emergency MRI.  I received a phone call from my doctor, he told me the MRI showed cancer on my spine. He advised me to go into Boston to the emergency room at Brigham and Womens Hospital. With my symptoms they put me on a neurology floor and ran tests and scans. The tests came back initially as a fast moving non Hodgkin’s lymphoma, but would take about 7 days to figure which one it was. I was assigned a Dana Farber Cancer Center doctor and after a round of RCHOP chemo I was sent home (7 days hospitalized). I met with my oncologist 7 days later and he informed me the biopsy showed Burkitts lymphoma. He told me he believes he can cure it but to do that he would have to “beat me down “. He said that I would feel like a had the worse flu of my life, times 10. Basically to cure it he would have to destroy me. My Chemo regiment changed to “modified Magrath Method ” CODOX-M with intrathecal’s (part A) and R-IVAC with intrathecal’s (part B). All treatments I had to be hospitalized, part A, 4 days inpatient then home for 3-5 days and part B, 6 days inpatient then home to recover to start the process over again. I developed a fever and had to be hospitalized again for 7 days. All together approximately 30 days inpatient. During the treatments to help my mind and body I walked 1-2 miles each day, if in hospital I’d walk around the elevators on the floor or at home walk a grid pattern in my back yard. No matter how bad I felt, I walked. Treatments at first were handled OK (RCHOP) I developed stomach issues probably caused by the prednisone. First round of A and B, I developed serious hemorrhoid issues which lead to infections. As the treatments progressed it became tougher to deal with it (more tired, flu like). I needed transfusions of platelets and blood since my levels were so low. Doctor was right he did beat me up but he put the cancer in remission. Doctor told me it could come back but if it does it’s usually in the first 3-6 months, after 1 year in remission it probably won’t come back at all.

We will continue to hold our breath for that first year and hope for the best. Hope this can help someone.

Good luck,
Doug

 

Medically Qualifying for Social Security Disability Benefits with Lymphoma

 

If you have been diagnosed with lymphoma, there may be financial assistance available for you and your family. Under some circumstances, lymphoma clearly qualifies and your claim could be approved in as little as 10 days. For other applicants though, an approval for Social Security disability with lymphoma may be harder to achieve. Even if you must fight to get approved though, winning a disability case means you’ll receive monthly benefits that can help you stay afloat financially when your symptoms and treatment schedule, side effects, or complications stop you from bringing home a regular paycheck.

The Lymphoma Disability Listing

The Social Security Administration (SSA) has established severity level requirements that must be met before any applicant can medically qualify for benefits. These details are outlined in the SSA’s Blue Book, which is a manual that contains dozens of disability listings for “common” medical conditions.

The lymphoma listing appears in Section 13.05. Provided your medical records show at least one of the following, then you meet this listing and are therefore medically eligible for benefits:

  • Non-Hodgkin’s lymphoma that is either resistant to treatment or returns following initial therapy
  • Indolent, non-Hodgkin’s that has been treated at least twice in a one-year period
  • Hodgkin’s lymphoma that persists or returns within one-year of completing the first round of therapy
  • Lymphoma of the mantle cell form

You can additionally qualify under this listing if you have undergone a bone marrow or stem cell treatment. These therapies automatically medically qualify you for a period of no less than 12-months after the completion of the transplant procedure.

Medical Approval without Meeting the Disability Listing

Not all people that get benefits for lymphoma are able to meet or closely match the SSA’s disability listing. Some get approved under a medical vocational allowance (MVA) instead. To achieve this kind of medical approval, you must be able to show that you experience severe functional limitations that stop you from working entirely.

Functional limitations may include things like an inability to prepare food, maintain concentration, clean your home, run errands, or maintain balance, just as a few examples. The SSA examines these limitations to better understand the kinds of physical and mental challenges you face in completing typical job duties. If the SSA finds you cannot reasonably hold a job given the limitations you experience, then you can be approved for disability under an MVA.

Supporting Your Disability Claim with Medical Evidence

Whether you qualify through the Blue Book or an MVA, you’ll need appropriate medical records to support your claim. The SSA must see at least the following:

  • Evidence of a definitive diagnosis, like a biopsy or pathology report
  • Records of treatment, including the schedule, type, and results
  • A longitudinal report from your physician, explaining the diagnosis, progression, and prognosis

Your doctor is your partner in your treatment plan and in applying for disability. He or she can help you understand the SSA medical qualification requirements and the evidence they must see in order to approve your claim.

Applying for Benefits

There are two forms of benefits you could apply for: Social Security Disability Insurance (SSDI), or Supplemental Security Income (SSI). SSDI is far and way the most commonly used form of disability benefits. So long as you’ve worked at least part-time throughout adulthood, you’ll almost certainly qualify for SSDI.

An application for the Social Security Disability Insurance (SSDI) program can be completed at the local office or online. For Supplemental Security Income (SSI) however, you must complete a personal interview. This may be done over the phone in some cases, by calling 1-800-772-1213. Interviews are more often conducted at the local office though, and typically require no appointment.

Submitted by: Disability Benefits Help

Saving Sarah from Cancer

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My story started on February 6th 2016, I went to Urgent care because I had ringing in my ears, jaw pain, headaches, nausea, and was feeling run down. The urgent care doctor told me to take over-the-counter medicines and sent me home. The next day I was so nauseous I couldn’t get out of bed but I had my sister bring me to a store to get something I needed for my job. I spent the week using over-the-counter medicines for my symptoms but on February 14th I had a headache that would not go away with anything so I went back to Urgent care. The same doctor told me to get someone to drive me to ER and he would refund my co-pay because the could do more for me to cure my headache. I had my friend drive me and they treated my headache with Metoclopramide (Reglan) and told me to follow up with my primary care doctor.

On February 15th 2016, I had an appointment with my new primary physician. He thought it might just be tension headaches but decided to order blood work. He called me on my cell phone at about 6pm at night and said he wanted me to come in the next day for some more tests. I told him I could come in after work and he said he would wait for me.

On February 16th 2016, I went to see Dr. F and he told me the the blood indicated I had an elevate ALT and low platelets (49) Thrombocytopenia. He had talked to a hematologist at Regions hospital and the confirmed that more tests were needed and he wanted to see me this week too. Dr. F also ordered a CT scan of head/brain and maxillofacial without dye. On my way from his office to the lab (in the same building) Dr. J from Regions hematology called and said he needed to see me this week after they got the results of my blood work. We agreed to talk after he saw the blood results. I had 10 vials of blood for 21 different tests drawn and then I went to Regions hospital to have my CT scans.

On February 17th Dr. J called and said he had looked over my lab results and believed I may have a bacterial infection and my regular physician Dr. F would be calling in a prescription for Azithromycin and I should start that today. We made an appointment for me to see him in 2 days. Dr. J’s nurse called me the next day to confirm my appointment and ask me to show up early to have blood drawn before my appointment.

On February 19th 2016, I had my appointment with Dr. J at the Cancer Care Center at Regions hospital. He was very nice and said he thought he knew what was wrong but needed a Bone Marrow biopsy to be sure. They do them in the office so we stepped into the next room and had the procedure done. Then he asked us to go have lunch while we waited for the results and come back and we would discuss them. So I went to lunch in the hospital cafeteria with my mom and her friend who worked in the hospital. When we returned Dr. J explained that I had Non-Hodgkins Lymphoma according to the Bone Marrow aspirate. He said he thought he knew the type but would need to wait for the Bone Marrow to confirm. He told me that it was an aggressive Lymphoma which meant he could treat it better but I would need to start treatment right away. I was taken to have a PICC line put in my right arm by IR and admitted inpatient to South 6, the Oncology ward of the hospital. They started Rasburicase IV and Allopurinol for the Tumor Lysis Syndrome. That evening, Dr. J came to the ward to check on me to make sure I was ok and answer and questions I had. He assured me that I was going to make it and that if I had not been admitted I would not have made it through the weekend.

On February 21st, I had an MRI of my brainstem with and without dye. On February 22nd,I had a CT of my thorax with dye and abdomen/pelvis with contrast. February 23rd they confirmed that I had Non-Hodgkins Lymphoma Burkitts and we decided on a regiment for treatment. We chose R-CODOX-M / R-IVAC. February 24th, I had an Echocardiogram (pre-chemo). On February 25th we started cycle one of chemotherapy. on February 28th I had a blood transfusion of 2 units. On March 1st I had Intrathecal Chemotherapy (spinal tap) and was Neutropenic so couldn’t leave my room without a mask. On March 3rd I had another Intrathecal Chemotherapy (spinal tap) and a platelet transfusion. March 4th (My birthday, I’m now 34) I had and x-ray of abdomen and front view for abdominal pain, turned out to be constipation. March 6th I had another blood transfusion. On March 9th I got a day pass out of the hospital so I went to see my co-worker, out to breakfast with my mom, and home to see my cat. On March 10th I finished the last part of chemotherapy for round 1. On March 12th I had a blood transfusion. On March 13th I was discharged from the hospital after 24 days. On the way home we stopped at Great Clips and I got my hair shaved as it was falling out and I didn’t want to clog the drains at home.

On March 15th I had an appointment with another Oncology doctor as mine was out of town and he said my counts were ready to start round 2. On March 17th I got saline and Rituxan in the Infusion Center as well as a Lupron injection. On March 18th I checked back into South 6 for treatment. On March 22nd, I had Intrathecal Chemotherapy and was discharged the next day and got a Neulasta injection.  On March 24th, 25th, and 28th I had Infusion Center appointments. On the 25th I was prescribed Levofloxcin for my Neutropenia and on the 28th I needed to have two units of blood (6.2) and one unit of platelets (5) because they were so low I had a bloody nose that wouldn’t stop!

On March 29th My mom took me to the ER for high fevers and chills which would spike every 4 hours. I had CT maxillofacial without dye, CT Abdomen/pelvis with contrast, Chest X-ray frontal/lateral platelet infusion (12), and was started on antibiotics after cultures were drawn. On March 31st, an upper extremity venous doppler study was done. Then on April 1st (No April fool here) the blood cultures showed a staphylococcus species, Coagulase negative in my PICC line. So they removed the PICC line and I became a human pin cushion for days as they waited for the infection to clear. I had to have 2 IV’s because the first one got infiltrated. On April 4th I had another chest X-ray frontal view. On April 5th a new PICC line was inserted left arm by IR after PICC services tried for a long time to insert on and couldn’t get it (ouch!). On April 7th they started round 3 of chemotherapy. On April 8th I had Intrathecal chemotherapy and was discharged on April 10th after 13 days in the hospital this time.

April 11th, 13th and 15th I had Infusion Center appointments with 2 units of  saline for dehydration on the 11th, clearing of my PICC line with Thrombotic agent on the 13th and I was Neutropenic again on the 15th. I went to the Infusion center for Neuprogen shots on April 15,16, and 17th. Then on April 17th I went to the ER after feeling dizzy and was diagnosed with Symptomatic anemia and given two units of blood.

On April 18th, I woke up with abdominal pain that moved to my left side and got worse. We went to the Infusion Center in a wheel chair due to the pain and was seen by the physicians assistant. She prescribed Morphine for the pain, Ondasetron for the nausea, and started antibiotics Metronidazole and Cefepime. I drank contrast and was taken to CT for an abdomen/pelvis scan. When we got there they didn’t want me with other people due to being neutropenic so they put me in another room while I waited. I got really nauseous and threw up, but luckily it was only liquid on my stomach. Then I was back to South 6 with a suspected case of Colonitis. On April 21st I had a chest X-ray frontal view. On April 22nd I got the last part of round 3 chemotherapy and was discharged from on April 24th with 7 days in hospital.

April 25th, 27th, 29th and May 2nd were all Infusion center appointments with a clot removal on the 27th from my PICC line. On May 4th, we started round 4 of chemotherapy with saline and Rituxan at the Infusion center. On May 5th I was admitted to the hospital for my last round of Chemotherapy. On May 8th I had a blood transfusion and on May 9th Intrathecal Chemotherapy. Then I was discharged on May 10th with only 6 days in the hospital this time. On May 11th I had an Infusion Center appointment where the cleared the blockage, changed my dressing and had an Neulasta Injection.

On May 12th I was admitted to ER for Neutropenic fevers, Cefepime antibiotic was started, and blood cultures were drawn. On May 13th I had a blood transfusion and an EKG. On May 14th I had a blood and platelet transfusion. On May 16th, I had a CT scan that showed I had Typhlitis and Pheumonia and a platelet transfusion. On May 17th I had a blood transfusion. On May 20th I was told I was C. Diff positive and everyone now was wearing yellow gowns and gloves when they come in the room. On May 21st another CT was done and for a while while I fought these infections I has on a liquid diet.  I was given antibiotics Metronidazole and Vancomycin, first in IV and then switched to oral medicine. On May 26th I was discharged to go home and recover after 15 days in the hospital.

On May 27th, 31st and June 1st I had Infusion Center appointments with a clot cleared on the 27th and dressing change on the 1st. On May 31st I had a CT scan and on June 1st I had a Bone Marrow biopsy to check to make sure the Cancer was gone. On June 3rd I had an appointment with Dr. J and he told me the tests showed there was “No Cancer” but he wanted to do a PET scan and a liver MRI to make sure. On June 10th I had a PET scan and it showed I had “No Cancer.” On June 10th, and 17th I had Infusion Center appointment to have my dressing changed and blood cheeked with my PICC line being removed on the 17th. On July 1st my lab results showed my blood counts to be in “normal” ranges.

Finally after 13 blood transfusions, 5 platelet transfusions, 7 Echocardiograms, 7 CT scans, 2 MRI’s, 4 trips the the ER, 4 infections, 5 spinal taps (CNS Chemo), 2 PICC lines, 2 Bone Marrow biopsies, 71 days inpatient at Regions hospital (South 6), and 218 cards from friends and family I’m in remission!

Cancer In The Work Place, setting it straight

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.By Jeffery Runyan; Stage IV NHL cancer survivor, Founder of the Burkitt’s Lymphoma Society.

“Who declared you disabled?” “You’re not disabled.” These are statements that have been said in my direction several times since I was diagnosed with cancer in 2009. As the Founder of a renowned Cancer Society, I find it my duty to educate people about Cancer’s effects on an individual and when a person has a disability related to cancer.

Cancer patient’s former and present can face challenges in life and one challenge, besides possible physical limitations, possible disfigurement or possible emotional distress a cancer survivor might face is a person’s perception of an individual in remission from cancer or of an individual whom is currently going through treatment for cancer. Don’t get me wrong, some people get it, but some people simply do not out of lack of understanding, or just plain ignorance.

I’m not going to address all the issues a person with cancer might face, but I will state that some people make it through virtually unscathed, some people don’t make it through at all, some people make it through and are left with side effects, it might be one or it might be a dozen. The point is, cancer effects people differently and it greatly depends on the type of cancer, the type of treatment, the stage, age, overall health and more. In fact it can be quite complicated on how someone may or may not be affected by cancer.

What would be my brief description of the world of cancer? Cancer is the uncontrolled division of cells in any part of the body. There are different types of cancer. There are slow growing cancers, there are fast growing cancers, there are intermittent growing cancers, there are skin cancers, lymphatic cancers, bone cancer, blood cancers, there are literally dozens of types of cancers and sub-types of a cancer. There are varying side effects, treatments, stages, outcomes and challenges, but what most cancer patients have, whether they like it or not is a disability. Why do most people with cancer past or present have a disability? For one a person has a disability, because they have or have had abnormal cell growth. The American with Disabilities Act, ADA for short, describes a disability as a “person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”

The ADA breaks this down further in the publication titled. “Questions & Answers about Cancer in the Workplace and the Americans with Disabilities Act (ADA)”

“people who currently have cancer, or have cancer that is in remission, should easily be found to have a disability within the meaning of the first part of the ADA’s definition of disability because they are substantially limited in the major life activity of normal cell growth or would be so limited if cancer currently in remission was to recur. Similarly, individuals with a history of cancer will be covered under the second part of the definition of disability because they will have a record of an impairment that substantially limited a major life activity in the past. Finally, an individual is covered under the third (“regarded as”) prong of the definition of disability if an employer takes a prohibited action (for example, refuses to hire or terminates the individual) because of cancer or because the employer believes the individual has cancer.

You see, no one has to declare a person with such impairment past or present that meets the above definition to be disabled. They simply have a disability and the law has made that clear. These laws have been made, because people with cancer have been discriminated against, are discriminated against and face life challenges that people without cancer, that don’t have a similar disability simply do not face.

Best Regard’s

Jeff Runyan

References;
1. U.S. Department of Justice Civil Rights Division, Disability Rights Section A Guide to Disability Rights Laws July 2009
2. U.S. Equal Employment Opportunity Commission ,Questions & Answers about Cancer in the Workplace and the Americans with Disabilities Act (ADA)

In Honor Of Andrew Tolley

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On August 6th, 2016 I will be riding in an event called Pelotonia. This event attracts thousands of bike riders uniting for one goal…to end cancer. I’m writing to you asking for your support as I work towards my fundraising commitment of $4000.  If you choose to support my ride, please know that any contribution that you are able to make is greatly appreciated and will help me get closer to my goal. Since the event is paid for through the generosity of corporate sponsors, 100% of the funds that I (and all riders) raise will go directly to the James Cancer Center in Columbus OH. Your gift is entirely tax deductible. “Sometimes I wish cancer was just a scary story told around a campfire.” These are the words spoken by my hero, my best friend, and the person I am privelaged to call my little brother.  My brother Andrew always had a knack to produce laughter and create smiles. On January 6, 2012, my family received news that would surely change our lives forever.  After a full body physical was done on Andrew on January 3, his pediatricians face went white as a ghost.  We were sent directly to the Helen DeVos Children’s Hospital Emergency room where Pediatric Oncologist Dr. Deanna Mitchell was waiting.  We were told that in children under the age of 18, Burkitt’s Lymphoma has a 98% cure rate. We started chemotherapy right away and initnially the NFL football sized tumor responded like it should have.  In July, andrew went in for a surgery to attempt to remove the tumor that was anticipated to take around 2 hours. Finally, after 8 hours of waiting the doctor came out and told us they could only remove about half of it. The rest was tangled around his colon and both upper and lower intestines. We now were told that we were going to start radiation.  Again the tumor responded well and a scan was done.  The doctor told us that there was still a little spot on the scan but it was most likely scar tissue from the chemotherapy.   Andrew was sent home for 6 weeks with bi weekly visits to give blood, receive platelets, and get scanned.   In mid-september to late October, Andrew started not feeling well again.  His tumor had grown back, larger  (about the size of a NBA basketball) and resistant to chemotherapy.  We were immediately sent on a Make-A-Wish trip which was a trip of a lifetime.Andrew’s health began to decline and he was not strong enough to board his flight.  He was placed on hospice care and a 1:10 am on January 6, 2013 my little brother passed away at the age of 15.   I WILL BE RIDING 50 MILES THIS YEAR TO HELP FIND A CURE TO THIS DREADED DISEASE AND TO ENSURE NO ONE HAS TO FEEL THE LOSS THAT OUR FAMILY HAS AND DOES FEEL.PLEASE. JOIN ME IN MY QUEST TO HELP END CANCER AND HELPING ME REACH MY $4000 GOAL! If you are able to help in any amount, you can visit www.pelotonia.org/rememberandrewt.   Thank you!

~~Adam Tolley

You Can Beat Stage IV

When I was first diagnosed in March of 2014 with Stage IV Burkitt’s Lymphoma, I did research online and was discouraged by the lack of success stories. That is why I’m writing mine. My body has been free of cancer since shortly after my second hospitalization for chemo. To make a long story short, six scheduled hospital stays, a few shorter ones because of side effects, 10 lumber punctures and 8 1/2 months off work. Best part of the story is that I’m still alive and I have my life back. I’m not as physically healthy as I was before the cancer, but I’m a better person; of that I’m sure. So you can do this, if you want to call to hear my voice to prove it can be beat and beat soundly, 517-515-1828. Fight and fight hard, the fog of chemo goes away, and you can return to a state where you can thank all of those who helped you through. Do let others help. The more they love you the harder it is to watch. I’ve been on both sides and watching is more difficult. God bless. Kathy PS don’t judge, no spell check and typed this while waiting for a well-check appointment.

 

Kathy Barron

Seven Years in Burkitts

Today is an anniversary for me of sorts, because on December 30th 2008, I was at work when I suddenly felt something strange. Not a touching feeling, but I felt a strange sensation, which later turned out to be Burkitt’s lymphoma. My life permanently changed from that date forward and there was no going back to the way things were. When the treatment was done I couldn’t feel anything from the knees and elbows down, I had near complete amnesia of things I knew before Cancer, I lost my health, my stamina, muscle mass, my life savings, and much more, but I have learned a few things about Burkitt’s lymphoma. I have learned how cancer effects people and how knowledge is empowerment and that has lead me on a path, a path to share with others. It’s to the point that if I don’t, someone else may not benefit and it matters, so I must.

Nearly seven years of studying Burkitt’s lymphoma and suffering from it and the treatments side effects, what have I learned? I have learned that diagnostic imaging isn’t always right. I have learned that time matters when its a matter of life or possible death. I have learned that when I get a biopsy for something that is questionable, that if at all possible and if it makes sense, I am getting the excisional biopsy.  I learned that side effects are plentiful. I have learned that not only can cancer rob you of your health, but it can rob you of social interactions and social functions.  I have learned that cancer can put you in financial crisis. I have learned a lot more, but what stands out the most is that when I was told that Burkitt’s is one of the good cancers, they were wrong. Not only because of my situation, but of others. I have seen many suffer. Burkitt’s has robbed parents of their children, robbed children of their parents, robbed people of their friends and has left people in pain, disfigured, and in hardship. Yes, I have learned that most of all Burkitt’s is not a good cancer, but Burkitts has put me on a path that I may have never gone down without cancer, that is at least one good thing.

Jeff Runyan
President/ Founder
Burkitt’s lymphoma Society

Jerry DeLeon Fight

imageHi my name is JoAnn DeLeon. Jerry DeLeon, my brother has always been an amazing brother and person . He is a loving, caring, and compassionate individual who loves life and will help anyone in need. He has so many people in his life that have the best memories and regard for him. About two weeks ago he was complaining about back pain the doctors would give him steriods and pain medicine which did not help. After two weeks he finally went to a different hospital emergency room they ran tests on him and pre diagnosed him with cancer. Further testing would confirm he has Burkitts Lymphoma Cancer. Within a few days he went from stage 2 to stage 5. Meaning the Cancer has been detected in his marrow and brain. The doctors have started him on very aggressive Chemotherapy because his Cancer is a very rare and aggressive kind.

I can get threw

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My name is Kayla my fiance name is Ryan. Ryan was diagnosed at age 22 with burkitts lymphoma stage 4 on june 10th 2014 Ryan was one of the worst cases the ever seen the first week they started chemotherapy I almost lost my other half he had kidney failure an was so swollen every where I stayed with him in the hospital room till he was released about 2 weeks later ryan has been strong threw this stating the whole time iam strong than cancer it aint gonna killed me iam gonna beat its but sure enough oct 26th no site of lymphoma but with this last round of chemotherapy in his port he got sick an was puking an didnt wanna eat was less active ryan has to go threw intertheoal chemotherapy 2 more times which is where they take fluid out of his spin an put chemo in it ryan has been having a hard time financially because when he got the cancer he had to quit his job because this cancer effects the immune system he gets sick he can die he is waiting to a decision for temporary disability they said the decision can take up till dec 15th 2014 he only gets it till he can work again he can start work again on july 15th 2015 money is the main issue I dont make that much its a struggle an I try my best to get him where he has to go an what he needs Ryan has such a high spirt his story was life changing from going to puking 12 time if not more a day to every once in awhile to none he has pushed threw so much he misses work a lot he is so ready to go back if anyone can help him that would be a huge blessing God bless an thank you for listening to Ryan Story

Peter Saint John

Peter Saint John’s perspective on life, love, friends and his family was inspiring through his journey with Burkitt’s Lymphoma.  Many drew strength from his faith and chuckles from his particular brand of humor; which was most poignant after his doctors told him his cancer would be terminal.  This collection of facebook stat

Peter Saint John’s perspective on life, love, friends and his family was inspiring through his journey with Burkitt’s Lymphoma.  Many drew strength from his faith and chuckles from his particular brand of humor; which was most poignant after his doctors told him his cancer would be terminal.  This collection of facebook status updates allows Peter to tell his story in his own voice—from the day shared his final prognosis until his last.  Those who were in his life are forever blessed by his presence in theirs and grateful for a platform to share his story.

October 23, 2013: Post on the Saint John Family Wall:

I’m about to make a public post now with my status, but just want to make sure you all know that this looks like the time God has chosen for me. So I’m only asking the doctors for just one to two weeks to see and be with each of you with all my main functions in-tact. I’ll ask Jesus for the miracle.

October 23, 2013: Post on Peter’s Wall

Hi everyone- I’ve got an update for you, unfortunately based on bad news. It turns out the first chemo treatment I took after remission didn’t have the great effect they initially thought, and the cancer is just attacking my brain and spinal cord unabated. Which means that three days ago I lost control of my vocal chords and cannot speak very well, or eat too well. So, I’ve asked the doctors for a plan that will give me a week of the best functionality possible so I can see my friends and speak with them, and then let the pieces fall where they may after that. They are on board with my plan, and we just hope this last dose of chemo (possibly radiation) gives me as much relief as possible, for as long as possible. I’m hoping for a week of strength, but I might only get a few days of the same. In any case, I want to spend it with my family and friends, and express how much you all mean to me and will continue to mean to me. I love all of you guys. I really do. And I thank you for all the great support you’ve given me so far. I just hope I can do it in person.

 

October 23, 2013: Post on Peter’s Wall

The fam is rollin’ in!

 

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From L to R: George Saint John (father), Appianda Arthur (father in-law), Joyce Saint John (mother), Bozoma Saint John (wife), Scott Zilora (nephew), Debra St John (sister), Stephen St John (brother), Peter Saint John, Angela Hubbs (friend)

 

October 24, 2013: Post on Peter’s Wall

 

A visit from our wonderful friends, Al & Lauren!

 

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From L to R: Bozoma Saint John (wife), Allen Scott (friend), Peter Saint John, Lauren Scott (friend)

 

October 24, 2013: Peter changed his profile picture

 

Designed by Peter’s friend, David Deasy.  The Mohawk Man has been the symbol of Peter’s fight.

 

October 28, 2013: Post on Peter’s Wall

Facebook farm: sorry for the delinquency lately… I’ve had seventeen family members come in to support me, with more arriving on the daily! But I’m doing good. God has given me time to spend with family and friends, and has also given me back my kingdom, which is the greatest gift I could ever get. And it doesn’t matter for how long… I feel so complete. So whole. So right. So this kid is doing just fine! Look forward to trying to get to see more of you this week. I’ll update with pictures over the next few days. And to those of you who are posting pics and changing your profile pics for me, I can’t tell you how much that means to me. Thank you        

 

October 28, 2013: Post on Peter’s Wall

Peter changed his cover photo

 

A shot of “the good stuff” to celebrate life.                         

 

October 28, 2013: Peter changed his profile picture

 

psj5 Mi FamiliaFrom L to R: Bozoma Saint John (wife), Lael Saint John (daughter), Peter Saint John

 

October 29, 2013: Post on the Saint John Family Wall

 

Family: I have the best news; for those that haven’t already heard, seen, deciphered, or otherwise know but… Bozoma and I have completely re-committed ourselves to each other! Of all the gifts or miracles I could have gotten, this is by far the greatest. I’ve got my bride back. My family. My kingdom. The one God gave to me ten years ago. And it feels incredible. And I don’t care for how long–I’ve got it. And its in no small part because of YOU! All of you. You kept your hearts open, all came up here and surrounded her with your open arms and your love, and your support for her and Lael, and your promises of keeping that bond in-tact. All that along with the off-color jokes, and your funny lovable Saint John ways. Which is what Saint John’s do! When it comes to rallying, there is no klan out there better than us. So from the bottom of my heart, I thank you, thank you, thank you. I love you all.

 

October 29, 2013: Post on Peter’s Wall Sometimes, the smallest things are the grandest. Boz and I recreating our wedding. Some post-prayer libations were poured from the very bottle from our wedding 10 years ago. Then we fed each other cake, thanks to a Hostess cupcake twin-pack. And true to form, we smushed it into each other’s faces. And ended it with a perfect kiss!

 

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  October 30, 2013: Peter changed his cover photo

 

psj9From L to R: Caitlin Saint John- Filip (niece), Britni Saint John (niece), Lael Saint John (daughter), Heather Saint John-Zapf (niece)                

 

November 1, 2013: Post on Peter’s Wall

 

Pics from last night. So thankful I could be a party of it. It was semi-controlled chaos! Love my Edgewater fam!

 

psj10 From L to R: Military Barbie, Princess Beauty Pageant Barbie, Red Sox Ken.  Halloween courtesy of  Mattel

 

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Lauren Scott (friend), Allen Scott (Godson)

 

 

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From L to R: Melissa Robinson-Brown (friend), Antoine Brown (friend), Kali Brown (Lael’s friend), not pictured Kyah Brown(Lael’s friend)

 

November 1, 2013: Peter changed his cover photo

 

psj16 Peter described this as THE BEST WEDNESDAY EVER!  After going to the Baths and enjoying Korean BBQ with friends.              

 

November 4, 2013: Post on Peter’s Wall

 

Lael taking our picture. And after art directing the shot for three minutes, “get your heads closer!’ Her shot was pretty good.

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November 4, 2013: Post on Peter’s Wall

 

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About to go with Boz to a high-class function! She’s being recognized by Ebony Magazine as one of the post powerful people in music

 

November 4, 2013: Post on Peter’s Wall What a fabulous date night with my bride! Incredible! Congrats Boz, you deserve it.

 

November 7, 2013: Posted on the Saint John Family Wall

Hey guys! Look what I found!!

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A picture of the store where Peter’s office ordered cookies; to which the extended Saint John family instantly became addicted.

 

November 9, 2013: Post on the Saint John Family Wall:

Okay guys, we’re doing good. I finished my 12th and last radiation treatment on Friday. Had a kidney sonogram which showed that the damage has been repaired. And my blood counts looked good. So I was admitted Friday afternoon, and got my next dose of chemo at midnight. So I’m back on the chemo warpath! My blood counts from this morning look great–all the way across the board. So despite being incredibly weak and fatigued, my body is fine. I just have to rest and let my body recover, and not worry about what I can’t do– I’ve got that as my frame of mind now, so I’m just going to be taking it easy. I should be out of the hospital on Sunday afternoon. I’ll be getting another MRI in a week or two to check improvement from the first one–I’ll let you know when that happens. And for those that don’t know, I’m moving into Boz’s place in the city. Yay!!! We are packing my apartment up, and I’ll end my lease at the end of November. We’ve got an army of volunteers to help us move next Saturday, with David coming down to keep everything going and packing the storage space. Thanks for all the support, love and prayers y’all. I love you!!!

 

November 10, 2013: Post on Peter’s Wall To celebrate our November 9 Engagement Anniversary, we did it all over again! (And yes, knowing I’d be in the hospital this weekend, we took these photos last week!)

 

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November 10, 2013: Peter changed his cover photo

 

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November 18, 2013: Post on Peter’s Wall

 

Getting ready for tonight’s game with my punkin’!

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November 20, 2013: Post on the Saint John Family Wall

 

Hi fam, just a quick update for you all. I’m working on getting my platelets back up for another round of chemo. So I’ll go for another blood test tomorrow and possibly get another platelet transfusion. I then have MRI scans next Monday and Tuesday. Then if my platelets are high enough, I’ll get chemo that Saturday after Thanksgiving. The only bad news is that the tingling and numbness in my feet, toes, and perineum (look that one up–I’m not explaining it! lol) has spread quite a bit to my ankles, hands and lower back, and had made me weaker. Dr. Noy wrote me a Rx for something that will reduce it a bit. But I have to just battle through it while we work on the cancer. I’m still going to beat this damn thing people! Love you all. Thanks for all the incredible support, and keep those prayers coming!

 

November 21, 2013: Post on Peter’s Wall

 

Dropping Lael off at her new school in the city!

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November 30, 2013: Post on Peter’s Wall

 

Hey people, Happy Thanksgiving! Thanks for your continued facebook and text messages. I wish I could respond, but unfortunately my hands and fingers are no longer cooperating. Keep sending prayers and love this way…I can feel it! — at Memorial Sloan-Kettering Cancer Center.

December 11, 2013: Post on Peter’s Wall

Family and Friends, Early this morning, Peter passed away peacefully surrounded by love. We can’t thank you enough for the incredible outpouring of support and prayers throughout this journey. Your messages have meant so much to Peter and to all of us.

 

December 12, 2013: Post on Peter’s Wall

Family and Friends, We will be celebrating Peter’s amazing life on the eve of his 44th birthday. The Memorial Mass will be held at Saint Jean Baptiste Catholic Church, 184 E. 76th Street, New York, NY on Saturday December 14, 2013. The service will start at 7pm. We will continue celebrating Peter’s life with a birthday party following the memorial. We thank you for your prayers, kind words and thoughts. In lieu of flowers, please consider donations to help us place a bench in Central Park, as Peter wished.   Please visit www.youcaring.com/PSJinthepark  for details.

 

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Burkitt no Sistema Nervoso Central

2013-11-11 21.23.21In July 2012 , during the winter vacation at my mother’s house , I realized that my son’s left hand was not moving , he is left-handed and could not draw …. I ran to him and took him to the emergency in a great hospital in Sao Paulo , Albert Einstein …. Orthopaedics , Pediatrics,  and Neurology found nothing wrong with him. They said he was fine and he must have suffered a nerve injury of the hand due to some effort. A week passed with no improvement. I took him to another neurologist, he said the same thing: nerve injury of the hand , spend 10 physiotherapy sessions and Electromyography.  After 1 week more he showed no improvement.  I scheduled another neurologist who said he had nothing but ordered a CT scan. 

 It had been two months and I had just moved to another area in my job, I was in training on my first day, when the doctor’s secretary called me saying that the doctor wanted to see me the next day. I almost died when she called me, in all my 32 years no doctor ever called me, this could only be something serious. I tried to talk to him the same day, I spoke with the laboratory, I was like a crazy person- I could see the report on the internet almost at midnight saying that there was something there like a Cavernoma it seemed. I began to read about it and I was desperate! Cavernoma (little did I know it could be even worse). The next day we arrived at the doctor for our consultation, he asked for the tomography images. 

 We had the in-house CT technicians get another set of images. We went back to the doctor he said no, that is not tumor, but may be a bleed if not a leak. Run to the hospital and ask for an MRI. We went home , got my hero and went to the hospital.  After fighting with 3 attendants who said they could not ask for MRI , I would have to schedule … I could go on and PS asked the medical ICU and asked an internist to  MRI in ICU- it just came in two months ago. About 3 days later Neurology’s report came to us that it was not bleeding , it was a tumor, 7 cm wide by 6cm in the Thalamus, a difficult place to access. It would not be good to operate, and he was too young to undergo radiation … We scheduled a biopsy, and frankly, in the brain, when the result came, we know Dr. Maria Lydia, she told us that the report was that he had a lymphoma. We didn’t know what lymphoma was, but she said smile because we had seen other types of brain tumors, but never Lymphoma … so this could be good news.  She said she had high hopes with Cassio, but he would have to hurry, because he had to start chemo that day, we learned that only then that this is a tumor that has a high rate of cure, but it is very aggressive.

 It was a long year, full of hospitalizations, more time in the hospital than at home, decreased immunity, antibiotics , endless needles, as you know, but we are very happy. Cassio’s treatment  began in August 2012 and it ended in July 2013.  He returned to school, returned to swimming lessons.

 (and yet) …I’m crazy with every symptom that comes along, scared thinking back on this terror, but I thank God and Doctor Maria Lydia every day for him to be with me and that it was a  Burkitt’s lymphoma, rather than a Glioblastoma , Astrocytoma …. All strength to all of you that are fighting this monster.  That he is with me at all makes me very, very happy. It was a miracle… Thanks, Jeff Runyan for everything, for sending methe articles about Primary Burkitt in the CNS, very rare…

 

Survived with CIPD

I went into hospital in June of 2012 after being told I had Burkitts Lymphoma cancer. I’d had a blood test, CT scan and a biopsy to confirm this. My lump had shown itself on the neck. As a man I had shaved every day, and although I noticed the lump I did not see my doctor for a few weeks. After I did he made arrangements for me to go to hospital. By doing so he indirectly saved my life. Upon getting my diagnosis the hospital doctor made arrangements for me to go to UCLH London the very next day to start treatment. Although quite a shock at the time I found out after that every 24hours this cancer gets bigger due to its aggressive nature. By the time my treatment had started, the side of my neck around the original lump had swollen. Could not fault UCLH at Euston Road for the treatment I received. As arranged by my local hospital, my chemotherapy started soon after admission. I was told that I would need 3/4 treatment cycles. I would not go back to work for about six months. Towards the end of the second cycle I started to loose sensation in both feet. During the third cycle, this loss of sensation continued upwards and the doctors stopped the chemotherapy. I and become paralysed from the waist down. The doctors could not understand what had happened and it took a while before a diagnosis was forthcoming. In the meantime I was given blood tests and a further CT scan to check on the cancer. Thankfully it was gone. Bilateral Lumbosacral Polyneuropathy was the eventual name given to my condition. After reading through the Burkitts Lymphoma website I found a section regarding CIPD, (chemotherapy-induced peripheral neuropathy.) this perfectly describes my condition. This has given me a great deal of information about what I am going through, what had caused my paralysis. It has given me plenty of hope regarding a full recovery. I lost all sensation and feeling in my legs, I lost muscle tone and mass and of course was unable to stand or walk. After my chemotherapy treatment I was transferred to a rehabilitation unit at the hospital for Neurology and Neurosurgery at Queens Square London. After spending three months there I was able to come home. After ten months with help from a physio and regular exercise my nerves are regenerating and I can now stand briefly with a frame and walk a couple of meters. My muscle strength and mass is coming back and I have exceeded expectations of my consultant and hope to walk again in the future. It is always important that if you are unsure, get it checked and act quickly. If I had ignored my lump for to long it would have become terminal. Thanks for reading and wish me luck !

Submitted by:Dave G

Burkitt no Sistema Nervoso Central

2013-11-11 21.23.21
See English version

Em julho de 2012, nas férias de inverno na casa da minha mãe, notei que a mão esquerda do meu filho estava sem movimento, ele é canhoto e não conseguia desenhar…. saí correndo com ele e o levei para o pronto socorro de um hospital ótimo em São Paulo, Albert Einstein…. passou com o Ortopedista, Pediatra e Neurologista, disseram que ele estava ótimo e que havia sido uma lesão no nervo da mão, por algum esforço que tivesse feito. Passou uma semana e nada de melhorar, levei-o em outro neurologista, disse a mesma coisa: lesão no nervo da mão, passou 10 sessões de fisioterapia e Eletromiografia caso não melhorasse, 1 semana a mais e nada de melhorar, consegui agendar outro neurologista que disse que ele não tinha nada, mas pediu uma tomografia.

Eu havia acabado de mudar de área no meu trabalho, fazia 2 meses, estava em um treinamento, primeiro dia, a secretária do médico liga dizendo que ele queria falar comigo no outro dia 10am… eu já gelei e morri ali, nunca nenhum médico ligou para mim, só podia ser algo grave. Tentei falar com ele naquele dia, com o laboratório, feito louca, consegui ver o laudo pela internet quase meia-noite dizendo que havia algo ali, que parecia Cavernoma, comecei a ler sobre Cavernoma e fiquei desesperada (mal sabia que era ainda pior) , no outro dia chegamos na consulta o médico pergunta pela tomografia, não tínhamos, o motoboy iria levar em casa, fomos atrás do laboratório, motoboy e conseguimos 2a. via. Voltamos no médico ele disse: não, isso não é tumor, mas pode ser um sangramento que não escoou. Corram para o Hospital e peçam uma ressonância. Fomos para casa, pegamos o meu herói e fomos ao hospital. Depois de brigar com 3 atendentes que disseram que não podiam pedir RM, que eu teria que agendar … consegui passar no PS e a médica pediu que o internasse na UTI  e pediu a RM. Da UTI ele só saiu 2 meses depois. Uns 3 dias depois o Neuro veio falar conosco que aquilo não era sangramento, que era um tumor, grande de 7 cm por 6cm… no Tálamo, um local de difícil acesso, que não daria para operar e ele era muito novo para fazer radioterapia…. Agendou-se a biópsia, e , sinceramente, no cérebro, quando saiu o resultado conhecemos a Dra. Maria Lydia , que foi lá informar que ele tinha um Linfoma …a gente não sabia o que era Linfoma, mas sorrimos, porque havíamos visto outros tipos de tumores cerebrais, mas nunca Linfoma… então devia ser algo bom, risos. Ela disse que tinha muita esperança com o Cássio, mas que teria que correr, porque ele tinha que começar a quimio naquele dia, só então soubemos que é um tumor que tem alta chance de cura , mas é muito agressivo.  Foi um ano longo , cheio de internações, mais no hospital que em casa, queda de imunidade, antibióticos, picadas intermináveis, como vocês já sabem, mas estamos muito felizes. O Cássio começou o tratamento em agosto de 2012 e terminou em julho de 2013, já voltou para a escola, para a natação… claro que eu fico doida com qualquer sintoma diferente que ele apresente, com medo desse terror voltar, mas agradeço a Deus todos os dias por ele estar comigo e por ter sido o Linfoma de Burkitt, em vez de um Gliobastoma, Astrocitoma…. ele está comigo 🙂 Muita força a todos.

Submitted by; Viviane Guimarães

 

Alive but life has changed for me

I am Nicky and was diagnosed with Burkitt’s in March 2011. I will keep this simple. I had been sick 5 months before they found my mass, located in the center of my chest. I kept going back and forth to dr and er. They kept saying bronchitis, viral infection, bronchitis and laryngitis. I lost my voice and breathing was difficult I would cough in fits for hours too the point I was peeing my pants, lol. I can laugh now at that but and the time it was just horrible. Finally left work wheezing when I breathed, my dr told me to report to the ER. From that point on my life was forever changed. There was a mass in the center of chest 26 percent of my body. Paralyzed my voice chord, cutting off my trachea, pressing into my aorta. I live alone, my children grown adults. I went through six months if inpatient chemo therapy, hyper C VAD with rituxin. Emergency pulmonary and Thoracic teams went in for biopsy’s. I had multiple blood and platelet transfusions, port infections neutropenic fevers and spent about four plus months in the hospital. All this said I am two years out and still here. Thank you GOD, my Dr. Kuriakose, all my wonderful P2 nurses and my great son, niece and father. I now ask you too please help me as I have depression and feel very separate from the world. I have been back to work one year but have missed about five months ofthat . I cannot adjust back in very well, stress I cannot handle and feel very alone. I need a routine and too be at work . I had several clear scans but the last two shown activity in my neck. It’s still in the gray area as they say so that is good. I just feel like I am outside of the circle looking in at the world not knowing where I fit anymore.:(

 

Submitted by; Nicky

Andrew, My hero

Andrew was a thriving young man, who at the age of 14, was diagnosed with Burkitt’s Lymphoma.  January 6, 2012 is a day that will live in my family’s memory for more than one reason.

Andrew was born on June 18, 1997 healthy and happy.  One day Andrew began complaining of stomach pain but I kept telling him that he was okay.  I finally took him to the pediatrician who originally diagnosed him with constipation.  After two months of constant complaining by Andrew, I noticed that he was as white as a ghost.  I called the pediatrician and got an appointment with her.  It was that day that would change our lives forever.  The pediatrician did a complete exam on Andrew and she had this look on her face that I will never forget.  She had a tear in her eye and explained there was a “lump” in his abdomen that needed to be seen in the emergency room right away.  We rushed across town where we were greeted by a kind-hearted doctor who proceeded to tell us in a matter of minutes that she believed Andrew had cancer.  My heart dropped, scared and crying, I listened intently to what she had to say.  We began all of the many tests and biopsies that had to be done to give us concrete answers as to what was going on.  On January 6, 2011, the diagnosis came.  We were informed that some intensive chemo therapy would be involved and he would be spending months in the hospital on and off.  Through all of this, although Andrew had to be scared, he never let anyone know.  He appeared to be the bravest of us all.

After four months of chemotherapy he had a PET Scan that appeared to show no more cancer.  We thought for a brief minute that Andrew was in remission!  However; there was still a spot on the scan and there was no way to tell if it was scar tissue or if it was still the tumor.  We waited it out for six weeks until another PET was done.  Our hearts dropped when we learned that Andrew was not in remission.  In fact, he was classified as “Resistant Burkitt’s Lymphoma.”  We were so hoping that it was gone but of course, it wasn’t.  Andrew’s tumor grew so large again, even through chemotherapy that it blocked his colon.  He was put through a nine hour surgery where they were only able to get half of his tumor.  He was admitted into the PICU where he was for two days.  Andrew bounced back after his surgery and he was feeling pretty good.  But then, the chemotherapy stopped working.  We tried every thing but nothing would touch that tumor.  The oncologist made an appointment for us to come talk about our options where I heard the worst words a mother could ever hear.  “Andrew, we need to face facts and you need to understand that this cancer is going to take your life.”  I was mad and I was hurt.  Andrew just sat on that bed and cried, and I will never forget what he said.  “I don’t want to die, I’m not ready.”  The Make-A-Wish foundation had to rush around and get Andrew’s wish together in less than a week.

We took his trip to DisneyWorld and had an excellent time.  While there the oncologist contacted me and said that Andrew was accepted into a clinical trial in Maryland.  We were so excited at the prospects.  When we returned home from Florida, three days later, Andrew and I took off for Maryland.  We were there for a week while they tried a new type of chemotherapy.  While there, Andrew gradually began to get sicker and sicker.  We were sent home for a week and told we needed to be back the following week.  While home, Andrew continued to deteriorate quickly.  I had to make one of the hardest decisions of my life, do I keep him in the trial knowing it’s not helping or do I accept the help of Hospice and keep him comfortable.  I chose Hospice.  I never gave up hope that a miracle would happen.  I kept hope until the very end.

Two weeks later, I remember laying in bed with Andrew and he was so very sick.  He was incoherent that entire day but I still talked to him just like he was right there listening to every word I said.  I told him how much I loved him and how proud of him I was.  He opened his eyes just as bright as could be and said the only thing we could understand that day, “I love you too mama.”  He closed his eyes and then I told him what no mother should ever have to tell their child, “it’s okay to go baby, I promise I will be okay.”  A few hours later, he took his last breath.

On January 6, 2013, Andrew died, exactly one year from the date of diagnosis.  He shares his date of death with my nephew who was still born January 6, 2011.

Andrew was a bright kid that had an incredible future ahead of him.  He had bright blue eyes and an amazing sense of humor.  He was the “glue” that kept us all together.  There is not a day that goes by that I do not miss him or wish I could hug him just one last time.  One day, I will meet him again and hold his face in my hands.  We will be together again, this is what I look forward to.

 

Submitted by:Amy Wilinski

Nathans Story

nathan 20On March 4th our 10 year old son was admitted to the childrens hospital with pneumonia. He was treated with IV antibiotics and they inserted a chest tube to remove fluid from the right lung. On March 11th…thinking he was going home, his abdomen swelled slowly..and by March 14th his abdomen was 44 inches and he was moved to ICU. Friday. March 15th. 10:45 am I  was informed Nathan had cancer. 10-12 masses in the abdomen. .  Along with friends n family….and we all had high hopes. Later on we were told it …was Burkitts Lymphoma. Rapid moving cancer but rapidly treatable. Very optimistic. We got to talk to him before they sedated him for the chest tubes, breathing tube and the ports for chemo and dialysis. The fluid from the cancer had moved into the lungs. (The original fluid when he went in was more than likely from the cancer and not pneumonia). Pneumonia had been the focal point the whole time..him not eating, fever, increased white blood cells, etc. etc. …we saw him after all the procedures and he was heavily sedated. They were gonna start chemo that Saturday. We left the hospital to pick up my car at the other hospital in Plano. 10 min after we left we got a call saying he had “coded” ….we raced back to the hospital and I have never ran so fast to get up to the floor. They whisked us in this lil room. They had us sign papers for life support…to get him stabilized. The cancer had released so much potassium, they couldn’t restart his BIG heart. The worst day of our lives. We all went in and said our final goodbyes. Preliminary autopsy shows 35 masses. They took samples and all his lymph nodes. Our son was a loving, giving, caring young man who would do anything for anyone. We dont know that much about Burkitts or what attributed to his demise. We are still waiting for the final autopsy report. He did not know he had cancer. I feel so lost. Not knowing. What did we miss? …How could this happen to us? ….I just want to know how to help with early detection. RIP my lovely boy. Please help us. We read online and read and read but still….we are at a loss. His love for giraffes and other human beings far outweighed his love for himself. We would like to know if we could do a fundraiser for the BURKITTS LYMPHOMA SOCIETY in honor of Nathan here in our community?

Submitted by; Linda Langley

Robert Baxter

 

My Story, an abbreviated version. For re577222_3373122689364_330280788_nal.

 

Superman and Captain America. Two strong characters, no doubt about that. These are the nicknames I gave two little premature infant boys I had helped take care of in the neonatal ICU spring 2007. Watching these tiny guys fight for their lives, grow, and go through various trials was routine to me. It was not routine for their mom and dad. I gave them these nicknames for fun. One day the mother asks me why I call Hagan “Superman.” I said, because he had strength he didn’t even know he had.

 

I became ill January 14th, 2008 on a Monday evening at church. I felt the distinct feeling of the flu: fever, chills, and cold to the bone. The next morning, I felt better and went to work. Driving on I-30, pain began in my lower back. The pain was on the move and increased quickly. I thought I was having a heart attack. I went to the nearest ER and was admitted. 7 days in a hospital revealed I was healthy except for an elevated white blood cell count. No diagnosis was given other than “costochondritis.”

 

Sickness set in deeply over the next three weeks. I lost close to 30 lbs., became increasingly weak, sweating around the clock, and my pain rose daily. I made several visits to doctors, ER’s, and hospitals looking for help. My symptoms were apparent but the underlying cause remained hidden. I kept working, but had to reduce to half days of work. I was finding the drive back and forth a frightening experience. I couldn’t get comfortable in the car. The level of pain was incredible in my lower back and somehow, the driver’s seat was most uncomfortable. I vowed to never own another car like this again with such an uncomfortable seat! One morning, during the drive to work, I couldn’t continue driving. I pulled off the nearest freeway exit and came to an abrupt stop on the side of the off ramp. I climbed out and began to walk. I walked up the ramp towards the road, turned around, and walked back down towards the interstate. I walked as fast as I could (which was quite slow) and went back and forth, talking with my sister on the phone. I knew something was wrong, very wrong. I wasn’t sure if I was going to have to call an ambulance, as I couldn’t take the pain. After what seemed an eternity, I managed to get in the car and make it to work.

 

I was referred to an ID doctor for multiple tests: fungal, viral, and other less common possibilities. I was in pain, weak, anemic, sweating profusely, confused, and scared. I was a sick man. She decided I needed a CT of the abdomen, amongst other things. It was one of the few places that hadn’t been poked, prodded, searched, or studied by this point.

 

On January 24th, I recorded the following:

“I’m still ill. I woke up this morning in a drenched bed. So, this is now my morning routine. Strip the bed and wash it down. Freeze as I’m doing it. I have multiple layers of clothes. Take some ibuprofen. Start the laundry, crawl under a cover on the couch and shiver for about 15 minutes.

Then I feel the chill leaving. I start shedding layers because I know what is coming next. Sweat. I am down to almost no clothes, carrying a beach towel to mop the sweat off of me the last 30 minutes or so.

I can’t sleep much. Fever keeps setting in around 7-10 each night.

Repeat daily.

I tried getting on the computer yesterday, just had no strength or desire to sit in front of the computer.”

 

February 6th, I recorded the following:

“Still having 24/7 fever, random pains to my back and going into my legs. Tremendous sweats at night. Fatigued.

I had a CT of the chest, abdomen, and pelvic area on 2/5 early in the morning. I received a phone call from the MD office that afternoon. It was one of those better sit down type phone calls. The lymph nodes in my abdominal area are enlarged significantly. Major suspected culprit? Lymphoma.

My dad and his brother have battled lymphoma. I looked up the symptoms for lymphoma online and I’m a perfect match, weight loss and all. Terrible weight loss program, don’t recommend it for anyone.

I’m waiting for the MD office to call with what time they are going to do a CT guided needle biopsy of some nodes in the abdomen. I have not been diagnosed with lymphoma and may have something other. The guy from the office said it was possible for other things to happen that could cause this. I asked him to name one or two….the phone grew awfully quiet….

I’ve cried so much this morning. I don’t feel like it’s my time yet, I don’t fear dying. I do fear ‘having cancer’ and all it entails. The therapies are rough.”

 

Then it hit me: I HAD CANCER. I knew it wasn’t diagnosed yet, but I had no doubt. I sat in my recliner and let the emotions flow.

 

Thirty days after my symptoms began, February 13th 2008, I was diagnosed with an aggressive rare form of Non-Hodgkins Lymphoma. February 14th, I was admitted to the hospital to begin chemotherapy. Happy Valentines Day! I was relieved to have a diagnosis, terrified of the possibility of dying so young at the age of 43. I had two teenage daughters, a wife, and a full life to live.

 

I met my oncologist. He helped me to understand that I had swollen lymph glands all over my body that he could feel with his hands. He asked me if I’d felt my neck lately. I suppose in all the confusion, I missed the rather obvious knots forming around my neck. He stated I would be in the hospital for eight months. Eight (8!!) months. I got a bit testy, as I had to get back to work. Denial at is finest, I assure you. He then said something to the effect that the next 10 days would be critical and I might not make it that long. My cancer was doubling in size almost every day, very rapid growth. I was Stage IVb, advanced lymphoma. A difficult and terrible awareness sank in. I was a man with cancer, confined to a room in a hospital for months to come, now disabled, and I was fighting for my life. Once the gravity of the situation became increasingly real, I broke down.

 

My nurse walked in and said, “Mr. Baxter, would you like one vial or two?” She sat two vials of morphine in front of me. Thus began my descent into a foreign chemically driven fog. I received a chemotherapy regimen called HYPER CVAD +R, one of the more aggressive chemo regimen that exists. I was to get a total of eight treatments on an A/B cycle approximately every 28 days. I watched various colors of fluids drip into my veins. I would have to drop steroids into my eyes on the “B” cycle to prevent corrosion in my eyes from chemo being secreted into the tear ducts. Bone marrow biopsies, blood product transfusions, frequent lab draws, being awoken every 2-4 hours for vitals or a medication, and so many unexpected twists and turns took away all control I had. I was at the mercy of the medical system, which was responding to my unpredictable and severe illness.

 

Maybe about one week after I was admitted, I found I was eating my food and the texture seemed wrong, rather odd. I hobbled across the room, dragging my IV pole, and looked in the bathroom mirror. Blood. I had been chewing on my bottom lip and could not feel it, not at all. I had absolutely no sensation in my lower lip and lower jaw. I had chewed on it enough that the doctor informed me the next day a soft diet and feeding tube were in my future if this continued. I quickly adapted and learned to not bite the bottom lip. I became used to the sensation of cold water running down my lower lip and chin, evidently a trick of the nerve endings.

 

A neurosurgeon said I had a decision to make. Did I want frequent spinal taps to instill chemo into my spine (less effective) or an “Ommaya” Reservoir in my scalp for a more effective infusion of “intrathecal Methotrexate?” I had never heard of an Ommaya Reservoir in many years of being an RN. It is a port to the brain. He explained he would make this small semicircular incision on my scalp and place a small flexible tube through my brain into the opening in the center of my brain. I responded, “You didn’t mention you would have to drill a hole through my skull.” For the record, I have a rather profound aversion to anything being done with my teeth or bones. He deftly replied, “the drill has a clutch in it so that it will stop spinning as soon as it pierces through the bone so it doesn’t nick the grey matter of the brain.” When I told my dad what the surgeon said, dad wisely cracks “hope the clutch don’t slip.”

 

Thanks dad!

 

The insertion of the Ommaya Reservoir occurred, spent 24 hours in the neuro ICU, and finally woke up early the next morning in the neuro ICU. I had been out for the better part of 20 hours. One surgery and CT scan later, I returned to my oncology room with a sore scalp. I learned quickly to not lift my eyebrows; not smart at all. These are the muscles that go across the scalp, right where they put the Ommaya.

 

The nurse comes in that evening, rather late, and states “Mr. Baxter, you’re scheduled to return to the operating room early in the morning.” I lifted my eyebrows when she told me that! I was not a happy camper. Evidently, the Ommaya tubing was not in the optimal position. The neurosurgeon came by later that night. “Hey doc, not too happy. You owe me an Ommaya set up so I can show my students. That’s the cost of having to do the same surgery over again.” Hmmpf. Another trip around the hospital for revision of the device, another CT scan, and I was back in my room with a really sore scalp. I assure you, I did not lift my eyebrows or laugh for a short while after that.

 

Insertion of the second PICC line was eventful. Specialized RN walks in, introduces himself and explains the procedure, and proceeds to set up the equipment on my right. That put him and his toys squarely between the bed I’m lying in and the door to the room. He walks me through the process and does a nice job. He leaves, stating the x-ray machine will arrive shorty to confirm correct placement. I hop up and decided to give dad a call. I’m using my right hand, the arm with the new PICC line, to hold the cell phone. I walk around the room, pacing a bit. After a few trips to the door and to the back of the spacious room, I noticed drops of blood on the floor. It was near where he had inserted the PICC line. This thought crosses my mind, “he didn’t clean up some of his mess.” I kept pacing, talking with dad. I found myself stepping over a few rather large blotches of blood on the floor. This went on for a few more minutes. I finally told dad, this guy made a real mess and didn’t even bother to clean it up. I kept slowly pacing around. It was becoming harder to step over the blood as there were few spots where I could put my socked feet and not step on blood. I finally stopped the conversation with dad and told him with a bit of aggravation, “I can’t believe this guy, he created a mess all the way from the front door to the back of the room.” A chilling reality hit me: he never went to the back of the room. Where was this blood coming from? I stood still for a moment and studied my legs, nope they are fine. I saw it happen! A big drop came off from my right elbow. I looked at the clear plastic covering over my PICC line and blood was steadily flowing out, down my right elbow, and dripping on the floor. I said, “Dad, I’ll have to call you back.” It was probably only a moment in time, but it seemed like an eternity. I looked across the room and saw red glistening across the floor. It was rather impressive. I, umm, well not really panicked, but sort of. I called for the nurse and lifted my right arm up high, holding onto the IV pole. I stood there and realized I had not felt the blood dripping down my arm and dropping off my elbow. I found that odd. I couldn’t feel it. How could I possibly not feel blood dripping down my body like that? I got a bit upset as I saw how much blood I had lost. I’m sure it wasn’t as much as I felt it was, but seeing that much blood spread around the floor was rather startling. God bless that kind nurse that got on her hands and knees to clean up all that blood!

 

I could have never been prepared for what was to come: lack of sleep for months, constant monitoring of the blood, replacement blood products, various stages of chemo agents, trembling, ears ringing, sitting for untold hours staring at the same hospital walls, weakness, and atrophy of my muscles. The journey becomes convoluted, unpredictable, and intense, with significant highs and lows. Days and nights blurred together. Chemicals of all kind were put in my mouth, in my veins, and in my central nervous system. I ended up with an Ommaya Port placed in my scalp, PICC line in both arms (one at a time), eventually got a double lumen port in my chest. I was warned my hair would begin falling out around day #21. I decided I couldn’t do the patchy look so I had my family shave my head.  I discovered “steroid rage” was a very real phenomenon after taking massive doses of steroids twice a day.

 

The chemotherapy “to my brain” (as I put it) caused painful side effects. I discovered this when getting out of the hospital bed one morning. Ever been in a car that had windows that seal too tightly? It will compress the eardrums of everyone in the car as the windows shut. Not fun. That was the warning I felt that meant I should sit down and get ready for a head banging time. First the eardrums move, feeling as if they were sinking in. Then the head throbbing would follow. Add in a touch of dizziness and that was my recipe for a skull full of pain.

 

I want to share what happened after my third dose of chemo. I was supposed to go home April 22nd. I recall being awoken and sat up in bed. One person on my left was talking to me saying something. I was sleepy, really drowsy, and fell backwards to sleep some more. This is significant in and of itself considering I was normally awake and having trouble sleeping most of the time. I recall being sat up again, the feeling of gentle slapping on my hands and my face. This time there were two people, a nurse was now on my right also. I could register some voices saying, “Mr. Baxter, you need to wake up, wake up now.”

 

I felt like a limp boiled noodle. My neck was weak, my arms and legs had no strength to them, and I was wanting to do was to fall backwards in bed to sleep. They wouldn’t let me. They forced me to sit upright and kept talking to me rather excitedly. I tried to focus my eyes and saw too many people in my room. People were moving around quickly; the door to the room opening and closing several times. I mumbled something to the effect “I’m so sleepy, let me sleep.”

 

The voices stated again, “Mr. Baxter, you have to wake up, now isn’t the time to sleep.” I got a bit irritated, but something registered inside my head that people moving quickly in my room trying to wake me wasn’t normal. When medical staff move that fast, there is usually a good reason. I tried to force myself to focus. It was hard. I felt so doped up, so weak, almost distant from my own body. I didn’t have much sensation, no particular pain, no nothing. It was almost like I was alive consciously, but my body wasn’t attached to my brain. The lack of sensation was hard to describe. I felt peaceful. I wasn’t feeling the usual sensations of chemo sickness, no headaches, no bone pain, actually I felt rather blank.

 

I managed to ask what happened, why are so many people in my room. The patient care technician to my left explained she came in to take my routine 4am vital signs and I wasn’t awake. She knew something was wrong. I rarely slept. If I were asleep, I was easy to wake up. She said I was sleeping soundly. She proceeded to count my respirations and couldn’t see me breathing. She got my pulse quickly and found it was 32 beats per minute. She called for help, hooked me to the blood pressure machine, began to try to wake me, and I wasn’t responding. My blood pressure was something like 68 on top and didn’t register on the bottom number.

 

My brain was catching on that something wasn’t right. I mumbled 32 isn’t a good heart rate. She said they had drawn blood and were waiting for results. They were thinking it was potassium related. They kept me talking to me, asking me questions. I started dozing back off. I could feel sleep coming on again. I couldn’t fight it to save my life. I was sliding down and they were sitting me up, telling me I “had to stay with them.” I could tell by the urgency in their voice they weren’t messing around. I’m not sure how long this went on for, but it lasted a while as they scrambled to intervene.

 

I eventually started feeling the strength to wake up, the desire and ability to make some effort to do anything but sleep. The same pct was still next to me, talking to me, encouraging me to sit up and interact with them. My potassium had come back at 2.7. That is low enough to slow down the muscles and nerves in the body, essentially suppress my person. They had given me an infusion of potassium IV. It was helping. The slow reality that I had come close to death was creeping into my soul. I started to give my all to staying alert, trying to talk, anything but not sleep. I wish I could say I felt fear, but I didn’t. It was so peaceful.

As the night turned into morning, my wife arrived. I recall the nurses and techs coming into my room every few minutes and making me answer questions. I recall them telling my wife she had to keep me awake. I was still drowsy. I was now short of breath, and sweating with the slightest exertion. The symptoms worsened as the day went on. They performed an echocardiogram and determined I had developed a large murmur in my heart. I was told mine was classified as prominent. I was moved to the telemetry unit and told I was ‘throwing some PAC’s’, which means my upper chambers of the heart are beating out of sync with the lower chambers of the heart. Again, this can be potassium related.

Telemetry brought about many changes. No more cell phone use. The unit was very, very old. The room was so small that I could hardly move the IV pole. I would get out of bed, walk in a half circle around the IV pole that was just to my right, and be at the bathroom door which was about 5 feet from where I slept. The bathroom is so tiny I had to leave the IV pole outside the bathroom. I could barely close the bathroom door when I was in the bathroom. My left elbow would touch the sink and my right elbow touched the old fashioned bathtub. Ugh. Very different from the beautiful suite I’ve been in so far. This unit was the last remaining units in the original old building. It was a throwback to days gone by. Cinderblock everything, few conveniences, and to take a shower, I had to use a community “shower room” down the hall. Awkward to say the least. No windows to look out of and nothing to help ensure a positive attitude. I felt I was in a jail. At night, I was staring down the hall. I could almost envision Florence Nightingale walking down this hall. No internet, TV was poor, and I was trapped in that small room. I did more walking in those few days in telemetry to keep my sanity than all the previous hospital admissions combined. I found myself becoming depressed and slipping closer to despair. I wanted out.  That was a very difficult time for me.

 

The physical environment was rather oppressive, just the opposite of the oncology ward. Everything was small. There was a musty smell in the air. The corridors where smaller and darker than newer hospital wings. The ceiling seemed lower. They didn’t have any waiting area or place for anyone to sit in the hallway, unlike the oncology floor. Nothing was bright or cheery. Honestly, it was depressing.

 

Many nursing students seemed to be flooding this ward. I don’t recall that many, if any, on the oncology ward. I was a subject of curiosity for them. They wanted to touch my Ommaya reservoir and see the double lumen port in my chest. I made the highlight of one student’s day when he got to access (put the needle in) my chest port. Oh boy, pin cushion Robert at your service, let me tell you. They each wanted to come in and ask me about my complex medical history.

 

It was during this time when I had one of the two episodes where stomach contents met the floor. No warning, just a 2 second sense that my stomach was upset. I was again impressed at the ability of the human body to eject contents. I called the nurse and they told me to get in bed and stay there to rest a while. Most curiously, once done, it was over. I didn’t have any gagging or lingering sense of nausea. I was grateful for this small concession, I assure you.

 

I measured my progress by my heart rate. They would come in to check on me frequently. I would ask my heart rate. “in the 40’s.” “in the 50’s.” When I finally heard that my heart rate was in the 60’s, I rejoiced. I later found out my heart was still going into the 40’s at night when I was asleep and this concerned me. I commented to the cardiologist I needed to eat more bananas. He said to not worry about it, commenting that bananas were not a rich source of potassium like people thought. Yes they contain some, but much less than is popularly spoken. When they weren’t in the room, I would reach over and pull out my Morten Light Salt that I had managed to acquire. Light salt is mostly potassium chloride mixed with a small amount of sodium. When I got home, my wife made sure I had plenty of Gatorade to drink.

 

 

When I was told I could go home from telemetry, a circus started, one I knew too well as an RN. The cardiologist said early in the morning I could be released. I asked the nurse to contact my oncologist right away. I was so ready to get out of there I was nearly desperate. No go, he’s not working today. Great, I have to deal with an on call doctor. That always means a “manana” attitude. Sure enough, “well the doctor said he’d be in to make rounds later tonight.” I sat there all day. My despair was turning to anger, feeling like I was being held for no reason other than convenience of another person. By eight pm, I was livid. I assure you, my heart rate wasn’t low at that point.

 

The on call doctor makes rounds and says “go home.” Oh boy, he had to walk in the room to tell me the obvious. My wife had been at work since 4am, it was now after 8pm, and I had no ride home. She was still at work. I pressured the nurse to get something done as I didn’t want my wife having to come pick me up at 10:30 pm after working 16+ hours of hard work. It was a long drive and a long walk. They finally told me that “NETI” would come pick me up. Sure enough, some EMT type of set up arrives. Onto the gurney I go. I am placed in a van with my head by the drivers seat, lying on the gurney, looking at the ceiling of a van. I can see the interstate flying by. It was a bit nauseating. I finally figured out they were taking some long way around to my house. I didn’t have the strength to say anything as I was focusing on not being ill. I finally arrived home and they allowed me out of the van. I had to sign release papers. Then something odd happened. The walk up the slope of my driveway to my home was long and hard. I wanted to fall out right there. It isn’t but maybe 30 feet from the curb to the front door. I stood at the door and realized I didn’t know where my house keys were or if I even had them. I realized I didn’t even know where my wallet was. I had this short moment of realization I hadn’t seen my personal belongings in who knows how many weeks. I felt a twinge of loss of control at that moment, standing by my front door, not even sure how to get it. I had to dig through my gym bag and eventually I got inside. I was met at the door by one of my daughters who had made a sign that said

 

“welcome home dad.” Indeed, glad to be home!

 

Little things took big importance. For example, sitting in a recliner became painful. Trying to get comfortable in the recliner took several pillows and a few minutes of adjusting. Walking became quite a challenge. I attempted to walk around the nurse’s station only to discover it would take hours of recovery time after only a few short laps. Didn’t see the point in that. I got to watch the hospital complete an expansion and observe with mild amusement (what else did I have to do at 8pm on Tuesday evenings?) the hoopla of the opening ceremonies with a bird’s eye view through a window from the 7th floor. I never knew I could value regularity so much. I endured extremes of diarrhea alternating with constipation. Sweet little dietitian would visit weekly about protein levels dropping. There wasn’t much to say about my diet as the food source didn’t change from day to day. Chemotherapy even affected my need for eye correction. My vision changed so frequently that one day my glasses would help, next day I didn’t need them. Other days things seemed blurry with or without glasses and I just didn’t have the strength to care.

 

Relationships became more important than ever. Cards and books and so many kind gifts and thoughts kept flowing into my room that it was overwhelming. The support being shown was tremendous. Friends from childhood all the way to present supported me. My mom and stepdad were regulars, sacrificing time and money to stay with me as much as they could, especially in the beginning when so much confusion was present. Each person who visited, the generosity shown by family and friends, by my parents and Janice’s family, by my daughters, was fuel to help me keep going. Every time I received another act of love, it was powerful to me. I’m not sure I conveyed it well, but I did feel the result of every choice each person made to honor my family and I; every act of kindness increased my resolve to make it another day. I received phone calls from relatives I hadn’t spoken to in a long time and felt so much love and support. Family gave their all in physical ways, financial ways, emotional support, the sacrifice of so many was touching to say the least. I had people from present and previous jobs showing up to visit and sending cards. I got a notice the fence in the back yard had blown down. A few days later, I get a picture of my next door neighbor laying in my back yard with a cement post across his chest. My daughters thought that was cute and sent it to me.

 

One day, two ladies appeared with their toddlers in the room. These were infants I had taken care of in the neonatal ICU two years earlier.  Parents of these boys found out I had cancer and came to visit me. I found that profound. They stayed a while and the room emptied of some other visitors. Dad and I sat there talking with them and I had to ask how they heard about my cancer, as I was not in contact with them or my previous work. They had heard from someone that I had cancer, seems news was spreading fast. I asked them when they found out. The response? That same morning, just a few hours earlier.

 

I sat there in disbelief. I was blown away by their kindness in coming to offer me and my family support. My dad was standing to my left, I was sitting, and they were standing in front of me. I mentioned I was so touched you would come to see me. I find it more than generous and has certainly caught me by surprise, means so much to me that you would care that much. They said something that has had lasting impact on me. They shared how much I had meant to them during the trials they endured when their sons were born. They said I meant so much to them. Keep in mind, I do recall them and their stories. I recall taking care of their sons for many nights. I do not recall doing anything out of the ordinary for them that I would be deserving of such an act of kindness. I said so, too. How was I different than other nurses who gave excellent care?

 

They said something I won’t soon forget. They said I had given them hope when they felt they had none. What I thought was a routine night shift in a NICU, they saw as someone who cared for them and their son. They said they slept well at night when I was there. They mentioned other nurses that provided the same comfort to them. They felt hope and good things coming.

 

They wanted to do for me what I had done for them.

 

I lost my man card at that moment in time. I lowered my head and the tears cut loose. I had no idea I had meant so much to them. Time slowed down at that moment for me. I was so overwhelmed at their words, their kindness, and generosity. I told them so. They said it is the least they could do for me. I can see my dad’s right hand reaching to his back pocket. Out comes the red-checkered handkerchief. H-O-N-K goes the nose. Dad gave up his man card too. I took away from that moment that one never knows the impact they can make on another. What may seem routine to one is a moment of hope to another. Acts of kindness can go a long way and are so refreshing when returned.

 

Family members brought us help and hope too. The first thing to mention about our family is that we are a geographically diverse family. My wife and daughters and I live in North Texas. Our families on both sides are spread out over Texas and New Mexico, most of the distances being long. We were by ourselves. The reality that they would sacrifice so much to drive so far to help us was deeply touching. So many came up at varying times and helped our daughters by taking them shopping for school clothes. Some came up and fixed things around the house. Some came up and cooked food and stored it in the freezer or sent us food through various merchants. Our daughters didn’t have cell phones so they were given “go phones” covered with sparkly stuff. My stepdad bought me a laptop as he said he knew I would go crazy sitting there for 8 months with no outside contact. My daughters watched movies with me, snuck down to the cafeteria with me to get “real” food, and did various neat little things to lift my spirits. My wife brought me food, real food, junk food, good food, anything but hospital food! She brought me Starbucks and was so kind to me. I know I’m forgetting some things that were done; the generosity was so frequent and so powerful. Please forgive me if I don’t mention your act of kindness.

 

One of my daughters made a bright pink poster to put on my hospital door. It read:

 

“My doctor says it is not the cancer that will get me. It is the germs on your hands. Please come in and wash your hands.”

 

I put that bright pink poster on the hall side of my hospital door every hospital stay. Yep, brought it with me and took it home every time. I could always tell when a new doctor was coming into my room. The door would open partially, I could see this white lab coat standing there reading the sign, then they would come in smiling saying “nice poster.” Months down the road, I was walking the hallway and a lady and I struck up a conversation. She commented about how the young girl has been here a long time. I asked her which young girl? She said the one with the bright pink poster that moves from room to room. I got the pleasure of introducing myself as that young girl! Funny true moment.

 

As I prepared to go home for my first time, the image of the front of the house flashed through my mind. I made a focused effort to picture the front door, the flowerbeds, seeing my daughters, and remembering what it was like to be at home. I had truly forgotten those small things as the weeks in the hospital labored on and chemicals layered one upon the other. As I realized I was going to finally return home for my first visit, waves of emotion overwhelmed me at just the mental image of my home. I hadn’t got to see my daughters much and missed them terribly.

 

I did not realize how hard being home would be on the family and me. I had become use to a routine, always having help at the push of a button, food brought to me, and having someone there 24 hours a day to tend to me. I didn’t have to think for myself when in the hospital. The first night at home it snowed and iced over. I couldn’t sleep. I walk in a daze to the bathroom. Seeing myself in that large mirror, late at night while the house was dark, I saw a pale weak man. I realized I hadn’t seen myself much as standing was difficult and the mirror small in the hospital. The home mirror was huge and I could get a really good look at myself. This pale swollen bald man was staring back at me. It was overwhelming to take in fully how bad I looked. I looked sick and felt that way. I ambled slowly to the living room. I sat in the recliner relishing the feel of it, tried to enjoy the TV, but found I could not focus for long on anything so I turned it off. I sat looking around the house. I couldn’t sleep and watched the snowfall, realizing my wife would be awake in the early morning about 2:30am to go to work. I tried to warm the car for her and that was a bit of a disaster. I broke the windshield wipers and broke the fan in the car heater. I did all that with very little effort too. Talk about confused.

 

I felt gratitude for being at home, followed by moments of confusion and fear. I was unprepared for taking care of myself when the family was gone. I got frustrated over feeling this way, as I had never considered before what it would be like to be so sick that simply getting food would be a chore. The house was quiet. My wife was at work and daughters at school. I realized at some point I needed pain meds and slowly lumbered back and forth to get them. I was shocked at the effort it took and how tired I was. The pain was not good. I realized I couldn’t get up to get anything without considerable effort and decided I couldn’t move much until the pain medication kicked in. I made sure I had a phone beside me and I tried to sleep. Sleep did not come. I sat for a couple of hours waiting for the medication to take effect. Eventually I got hungry and saw the refrigerator across the room. Suffice it to say, the things I took for granted: preparing food, getting a drink of water, basic needs, I no longer took for granted. I went from a state of dependence on a system in the hospital to independence while the family was gone. Real world scenarios don’t always allow for a caregiver to be sitting there to help me nonstop. I was so out of it that I missed that it was my youngest daughter’s birthday. Did not realize it until they had a cake brought out and were getting ready to sing happy birthday. I was so angry with myself when I realized I didn’t even know it was her birthday! Anger mixed with so many other emotions, yet feeling so happy to be at home. I was a mess.

 

I made it 4 days at home and it was time for my first oncology visit. I was rather exhausted that morning. Seems I was getting weaker by the hour. I was out of breath going from the bedroom to the recliner, a distance of about 30 feet. I couldn’t reach down to tie my shoes. It was a moment crystallized in my memory when I had to ask Janice to tie my own shoes. I was so tired, more so than ever before. I made it to the car and rested. From the car I made it through the sliding doors and found the first bench. I sat and waited, catching my breath and gaining strength to make it the next 20 or so feet to the elevator. From the elevator, I got to the front desk about 40 feet away. I held onto the counter and the lady asked me to have a seat. She could tell I didn’t feel good. Before I knew it, a nurse was at my right side with a wheelchair asking me to move to the wheelchair. I was zipped to the large infusion room in back. My blood pressure was taken and it was something like 86 over 30. They put my feet higher than my head and began infusing fluids. The oncologists face appears, hovering over mine. He said I didn’t look well and needed to be hospitalized. On to the hospital I went for my next stay, a few days early.

 

Thus began a rhythm of ups and downs, advances and retreats. I was in and out of the hospital. I would go to the oncologist’s office. Then go get units of blood and platelets. I found after the blood transfusions, I would have temporary energy boosts. When I felt strong enough, I would go run a simple errand. When I first got behind the wheel of a 2,000lb metal machine with wheels, I wouldn’t let it go much over 20mph. Other drivers didn’t care for that. I realized I had to speed up; going 30-35 mph felt like I was flying along. I was scared to drive for my first time since I was 16 years old.

 

I had no idea how bad public outings could be. Let me tell you something, the human body is quite capable of tripping up its owner and that reality became my reality. It was terrible. I couldn’t pinpoint that strange odor in Best Buy. The isles become long as I slowly walked to find the restroom. A new level of shame over my inability to control my own body emerged. What to do in a stall in a technology store with just my clothes on my back and I no longer wanted to be in public? Survival at its finest. How do I exit gracefully in a situation like that? I discovered the human nose is capable of discharging, without one moment of warning or any sensation whatsoever, an impressive amount of clear thin watery solution down my shirt, right in the middle of Albertsons. It happened while standing in the bread isle next to some random person who got the joy of witnessing damage control. I wasn’t ready for something like this, had never had it happen before, and the amount of liquid was impressive. I didn’t know what to do so I grabbed my shirt and tried to contain the flow. It was a real mess. It happened again while checking out at the register at Radio Shack. I’m finishing my purchase when my ears start the deep movement. Here comes the head pounding. Then the nose gives no warning, just a huge watery release that I couldn’t contain, predict, or manage. My shirt was soaked and I learned to simply suck up the shame and keep going. I was humiliated. I focused on walking, just walking ahead and concentrating on making it in full retreat to hide in the van and rest.

 

When I got home after one long hospital stay, I was handed a rather large box. Inside were various cookies, puzzle books, and many great gift cards. I found this large yellow duck that would sing “splish splash I was taking a bath” when the stomach was pushed. Then I found a picture frame with two pictures in it. It was me holding one of the preemies I called “Superman.” The top most picture, his eyes were closed and he was surely tiny and weak. The bottom picture, his eyes were open, his face filled out a bit more, and he was certainly sporting less tubes and looked a bit stronger. Oh my gosh, this box is from the family of the twins I helped with! It’s from Superman and Captain America! My daughter said the mom had dropped it by the house, hoping to see me. I was sorry I missed her visit.

 

The box was big and deep. It has so many great treasures in it. When I got to the bottom, I found what was to become perhaps one of my finest treasures of all. Folded neatly in the bottom was a faded blue shirt. I unfolded the shirt and beamed with pride when I saw it was a Superman shirt. I noticed how the Superman logo wasn’t slick and shiny as is typical, but rather, it was scratched, worn, cracked, and appeared to have been through a terrible battle. Wow, Superman must have been in a terrible fight! It wasn’t the usual slick cool looking logo, but rather, a beaten up Superman look. I noticed a piece of paper pinned to the shirt. I unpinned the paper and opened it. A line was drawn through the middle from left to right. Above the line it read

 

“Remember how you used to tell Hagen he was like Superman? How he had strength he didn’t even know he had?”

 

Below the line were the words:

 

“now it is your turn.”

 

Words cannot convey how hard that hit me. I couldn’t stop marveling at the impact of that one sentence. Took me a while to stop crying. My man card flew out the window at that moment. How in the world did they find out? Oh, I didn’t care; I was elated over that shirt! After that moment, I wore it most of the time I was readmitted to the hospital to remind myself I had strength I didn’t even know I had. That one act of kindness made such an impact on me. I try to retell this story from time to time, but have to be careful. I cannot share it without my eyes sweating something fierce.

 

I was told I would not sleep much during chemo. They were too reserved with their words. The degree of internal trembling and pure energy that shot through my innards and bones is difficult to describe. Nights blurred into days as the sterile environment of the hospital merged from one set of vitals to the next lab draw. Nights at home were quiet and I would get tired of lying around so I’d amble about. I had trouble focusing enough to watch TV or a movie, didn’t feel up to getting on the computer often, there wasn’t much I could do. The chemicals and sickness took their toll and I know I was confused more than once.

 

I awoke very early one morning at the house, lying on the floor of the living room. It took me a while to figure out where I was and why I was there. I saw CD’s and items that had previously been stacked by the TV scattered around where I was laying. I wasn’t sure why DVD’s were laying on my chest. I slowly got up and looked around. Things were scattered around on the floor. Something sharp was stabbing me in the back of my shirt. I reached around and pulled out from my shirt about a 1-inch piece of wood, dark thin wood. I sat there trying to figure all this out. Last I recalled, I was lying in the bed and then I was on the floor. Evidently I had meandered out of the bedroom, knocked over a lamp, fell onto a wooden magazine rack and broke it. This caused a piece of wood to lodge in my shirt. Then I estimated I must have made it to the TV to do something and fell out across the floor knocking over items stacked next to the TV. How long was I out? I had a faint memory of trying to pick up a magazine and sliding down the wall instead. I couldn’t read so I must have gone to the TV. After I pieced all this together while sitting on the living room floor, I knew it wasn’t a good scenario to be that confused. I was a bit nervous after that, fearing what would happen to me due to chemicals and insomnia.

 

By August I was exhausted and weary of the entire regimen. I had had a really trying weekend. It hurt to sit in the bathtub. No meat on my bottom. I got so weak either Saturday night or Sunday night I wasn’t sure if I was going to be able to get out of the tub. That was a scary moment for me. I was so weak I couldn’t stand and I was afraid of slipping on the tub floor. I spoke with my wife and she encouraged me to go to the emergency room. I felt I had an ounce of energy left in me and decided the ER could wait. I have my routine oncology appointment Monday morning and I can make it until then. I did get a little stronger a few hours later once I managed to slowly climb out of the tub. I decided I could no longer take a tub bath, too dangerous and difficult.

 

Monday morning came. Janice checked on me before she left for work early in the morning. I wasn’t feeling good. I had this belief that going through chemo felt terrible and this was part and parcel of the ordeal. Feeling bad was normal. I told her to go on to work and I would manage. I mean, what was I to expect, to feel good? What I did not realize but can see looking back, I was reaching one of my lowest points and had no business being at home. Easy to see that now, but hard then. I felt about as bad as I thought a person could possibly feel and still be alive. I kept telling myself chemo is rough, what more could I expect? I certainly wasn’t supposed to feel good going through chemotherapy.

 

I knew it would be an exhausting long day of office visits. Usually meant blood transfusions, too. I stood in my closet and decided it was time for the Superman shirt to help me out. I needed some strength. The family was at school and work. This was after chemo round #6 and before #7 was due to begin.  Drying off after the shower, I noticed I had a bruise on my bald scalp. I didn’t remember hitting my head on anything. I put on Superman and got medications I might need for the day. I walked slowly to the refrigerator and got my lunch. I got my salty crackers and my thermos of super salty chicken bullion. I had gotten in this habit of bringing my salty stuff with me after that super low blood pressure scare my first time at home. I slowly walked to the car. I noticed more bruising when I got to the car. Odd. I slowly drove to the oncologist’s office. I recall that drive. It was one of the longest I had ever made in my life. Time seemed to slow down. I inched along every block wishing I were already there. I felt sucked dry of every last fiber of energy. I was determined to press on. I almost didn’t think I would make it as I felt about as bad as I had ever felt. I could not imagine feeling much worse. I was beginning to realize I should have listened to my wife and gone to the emergency room a couple of nights earlier.

 

I arrived at the oncologists office and sat in the car to rest. It was a good walk of 200 feet or so to reach the front door. I walked from the car to the first bench, about 100 feet. I sat in the sun for a while, feeling it warm my skin. I wasn’t sure if I could make it much further. I determined to press on after a bit and forced myself to walk. I shuffled very slowly through the doors and sat at the bench just inside the doors. I got to the office waiting area, stopping at each bench along the way to the front desk. Texas Oncology is a large place always full of people moving here and there, waiting in one area or moving to the next. I had experienced this before: extreme fatigue, stopping to rest every 20 feet or so. Yet somehow this felt different, even worse than I could recall. I eventually got to the second waiting area. I found that I was so focused on making it, on walking to the next place, that I was almost drawn deep inside myself. My hearing, for whatever reason, seemed unusually strong. Best way I can imagine saying it was like all my senses were dulled except my hearing. I heard two distinct comments, words that have stuck with me to this day like “bless his heart”, and “remind me I have nothing to complain about if I ever get that bad.” I could tell they waited until I was a little distance from them to make their comments, but my hearing was really strong at that moment. I sat in the chair and felt my last ounce of energy melt away, simply gone. The noises around me became a blur of sound.

 

Most chairs in the waiting room were full. The one to my left was empty. I closed my eyes. Rest, finally. What a long exhausting drive. The walk had finished me off. I could tell a nap was in order. I began slowly tilting to my left. I wanted to sleep and didn’t care if I looked a bit off kilter. I felt myself slipping into a nice needed nap as I relaxed. It was a slow maneuver as I sunk deeper into my own bubble. I felt strangely comfortable, almost like warmth on my left ear. I decided it mattered not and decided to just go to sleep. Eventually I came to rest on someone’s shoulder. Ahh, warm and comfy. I believe I do remember thinking how I am resting my head on someone’s shoulder, a person I don’t even know. I actually did not care and made no effort to sit back up or speak to the person. I drifted into a sleepy mode at last and the world seemed to shut down.

 

I heard a voice speaking softly. Eventually I realized it was talking to me sayin, “Mr. Baxter, why don’t you come on back. I think we’ll get you in quickly this morning. You aren’t feeling well, are you?” I could tell it was the shoulder to my left. I found this curious as I was sure I had been asleep for a while. I mumbled, “I’m so tired.” It was one of the nurses. She had sat next to me. My head was heavy and I labored to lift my head up straight. I shuffled rather slowly with my head down. The walk was long through a waiting room full of people. It was now quiet and I could feel everyone staring at me. Someone had notified the staff there was some sick man in the waiting room and I was now the center of their attention. I was acutely aware of this. Superman was out of strength.

 

They normally weigh me as soon as I make a right turn in the door. She didn’t stop me at the scale this time. She sat me down in the first open exam room. I felt something wet on my face. The nurse was handing me towels. It all seemed to be in slow motion. I wiped my nose. Blood was on the towel. I proceeded to wipe again. More blood. I could feel dripping. More dripping. More blood was on the towel. I could feel this steady dripping and held the towel under my nose. The reality of the entire last few days, of the last few months, was setting in harder than ever. The reality of everyone staring at me in the waiting room hit me. The long drive, the hard walk, unable to tie my own shoes. All of this seemed to crystalize that one moment.

 

I realized I was spontaneously bleeding from my nose. I could see bruises up and down my arms and legs. This deep well of emotions started to pulse in my stomach and chest. I felt helpless, weak, and humiliated, absolutely humiliated at what I had become. I looked up at the nurse. She said, “We’ve already called the ambulance, they are on their way.”

 

I lost my man card at that moment. Again. In a Superman sized way.

 

I could no longer control anything. I couldn’t control my emotions. I couldn’t control my future. I couldn’t control where I went from day to day. I couldn’t control bleeding and bruising. I couldn’t control energy. I couldn’t simply walk inside a building, much less go up the one flight of easy stairs to the 2nd floor. I couldn’t control people staring at me.

 

Memories ripped through my mind. I remembered people staring at me at McDonalds the first day I was discharged. I remembered how this lady approached me a few months ago on the lobby of the oncology waiting room to tell me “I was here that day they took you in the back in the wheelchair, you sure do look so much better now.” I know she meant well, but I found it shaming to be so bad off people could remember me months later. I thought about finances and how we were out of money, relying on the generosity of family to keep paying our house note. I was out of control on finances, having taken a 40% pay cut for disability. If it weren’t for the exceptional generosity of family, we would have had to declare bankruptcy. Medical bills were eating us alive. I remembered how I lost my bowels in public. The memories of endless time spent sitting or laying around feeling terrible was crushing me. All the lab draws, sometimes several a week when at home and daily at the hospital. I hadn’t been to work in 7 months and was wanting to simply be normal again. I felt anything but normal. All this stuff was flashing through my mind as the nurse handed me another cloth, the last one was now saturated with blood.

 

I felt the tears welling up. I really didn’t want to get upset, but could tell this was going to happen. It was deep, deep inside of me, a sorrow over what I had been reduced to. The tears started to pop out of my eyes. It wasn’t going to be a weeping ceremony, couldn’t get that lucky. This was deep from my gut and waves of emotion came spilling forth from my deepest innards. I hated it. I hated it. I did not want to be so upset. I cried and cried, trying to control the blood, trying to stop the tears. This poor nurse must have thought I was going to the looney bin. She was so kind. She offers another clean cloth. Between the tears and my now swollen eyes, I could see bruises on my arms increasing in size. Where did all these bruises on my legs come from? Mucous now mixed with the blood that was on the towels. It became even messier. I had no ability to control my body, my emotions, my future, my choices; I was along for a terrible nightmare that seemed it would not stop. It felt like gravity was getting stronger and my strength was fading. I could tell I was losing my battle and started to fear for my life at that moment in time.

 

The oncologist entered the room. He explained I was registering no platelets on the blood they had just drawn. He said my hematocrit was 6.9. He looked at me and said, “Mr. Baxter, you are very ill.” He examined the bruising across my scalp, arms, and legs and said I had to get blood right away. He explained he had already called the hospital floor and told them to prepare for my arrival and stated I would be a direct admit to the 7th floor. He said they are preparing transfusions on an emergency basis.

 

Two paramedics with a yellow gurney appeared at the door. I realized they wanted me on that blasted metal contraption. I thought about that long trek through the waiting room, how full it was, how I was an emotional bloody mess.  They helped me onto the gurney and strapped me in. They tried to put oxygen on me, but it wasn’t going to work well with the bleeding. I was trying to hold the towels near my nose.

 

I asked the paramedics to take me out a back way….

 

there – is – no – back – way

 

Out through the same large waiting room filled with the same people staring at me. I had blood on the towel under my nose. I couldn’t stop the emotions from flowing and a new level of low became my reality. I wish I could tell you differently, but I felt so much shame, like I was a public spectacle. I knew no one meant it that way and no one asked for this, it just is. I was pushed through that large waiting area across to the elevator. I wanted to die.

 

About that time, fever and chills set in powerfully. I started shaking to the core of my body. Fever spiked and stayed between 101-103 for days, with small moments of reduced fever after a dose of Tylenol. My breathing became labored and they started breathing treatments. I learned I could shake from both albuterol treatments and from deep chills. It was two different kind of trembling. Chills were more in my bones and the albuterol made my muscles and skin tremble. It was miserable. I was sweating profusely and experiencing profound weakness unlike anything I had experienced up to that point. The nurse realized something else was wrong and made phone calls. Lots of blood was drawn. Soon, I had two doctors standing at my bed discussing various options, trying to troubleshoot what they could do. The x-ray revealed pneumonia. The talk was possibly removing my port, the most likely source of the infection. They discovered fluid around my heart.

 

August 27th, I wrote in a journal that they were wondering if my port was being rejected. They had all but ruled out infection, as they couldn’t get anything to grow on a culture at that point. The issue here is that my port is a double lumen port, not as common. It had been a major battle with the insurance company to get this inserted and cost several thousand out of my family’s pocket. If they remove it, the implications are terrible for me. I had recorded “I’m so weak that I can’t even open a soda can or bottled water. I tried to get up to go to the bathroom earlier and slid across the floor and sort of controlled crashed into the bathroom. They’ve put me on bed rest and turned on an alarm so that if I get out of bed, it squeals. My lungs started filling with fluid. Some steroids and breathing treatments have made a big difference there. My poor wife is getting worn down and the girls are getting concerned. The cancer is getting the best of me. I still have a 50/50 chance of making it. So far, it all points to the good 50%. But I’m so weak and sick right now.”

 

In a cruel twist of fate, something else happened that brings me to tears. My mother-in-law had visited with us a couple of times this year. She was a vibrant woman in her 80’s. She walked slow yet had a quick sharp wit about her. I recall a specific moment when she walked faster through the house than I did. We both had a good chuckle over that. My wife brought me terrible news in the midst of this hell I was in, just terrible news. Viola had fallen. She had slipped into a coma.

 

I began to worry something fierce about my wife. How in the world she could deal with all of this? She was now raising the kids, working full time, keeping the house together, helping me, and now her mom. My wife is resilient but everyone has a breaking point. I truly worried about her. I was worried about my future, if I was going to survive the next few weeks. I thought of my daughters, my family and friends. I couldn’t even get out of bed and I was getting very worried if I was going to make it. The weight of all of this pressed in deeply upon me and I said a prayer and gave up.

 

I was so exhausted. All I could do was lay in bed. I couldn’t even bathe myself. One night a patient care technician came into the room while I was on mandatory bed rest. She asked me when the last time was that I had gotten “cleaned up.” I wasn’t even sure. I was laying in a sweaty set of linens. I had called my sister and she was going to come up to help me, but hadn’t arrived yet. As the PCT left the room to get supplies, I felt humiliation at the idea that I couldn’t even bathe myself. I knew it was her job, but I had never been reduced to such a state in all my life. I was so sick, so weak, and so worried about my wife and myself. In comes the PCT with a stack of linen and bathing supplies. I tell you what, she was the consummate professional. She cleaned me from head to toe, changed the linens, and was out the door in 20 minutes. I felt so much better. I gave her a big “thank you.” He professionalism and compassion was not lost on me, it was inspiring.

 

I recorded the following on September 5th, 2008:

“Turns out my port in my chest isn’t infected. This is a good thing. Since I have been getting so low on my immune system, I had a type of virus called CMV activate in my body. Something like 80-90% of all people carry this virus. The immune system normally keeps this relatively harmless virus under check. Not me. Since I’ve had my immune system (white blood cells) go down to 0 twice in the last two months, this virus has decided to play around with me.

They did a CT of the chest and abdomen and didn’t find any swollen lymph nodes, but did find evidence of very small pockets of “infiltrates”, which is basically pneumonia. That would explain the lung junk and coughing. I also have a “tiny pericardial effusion” which basically means a small amount of fluid around the heart. Both are treatable.

I’ve now been in the hospital for two weeks related to this illness. I was home for a few days before that. Suffice it to say I now almost live at the hospital with just short breaks at home.

I’ve been waking up each night in tremendous sweats. Sometimes once a night, sometimes 3-4 times a night. Since my wife’s mom has taken seriously ill (she fell, broke a hip, and is now unconscious), I called my oldest sister to come up and stay a while and help me at the hospital. I couldn’t have asked for a better nurse to fetch food, change soaked linens, and that kind of thing.

I still have a while to go before I’m allowed to go home from this illness. I can’t seem to get a straight answer out of the doctors. Then I will need a period of time to allow my body to build up some strength for the last round of chemo. Each round had knocked me down further and harder. Truthfully, I’m a bit scared of this last round and how terrible I will feel. I’m also starting to deal with something that I don’t normal deal with: depression. After my sister left today, the room was painfully quiet. Things don’t change from day to day anymore, I feel terrible everyday, it is lonely in here, and I guess I finally reached a point where I’ve just snapped.”

 

The two doctors appeared again at my bedside and shared with me about the CMV infection. Twenty one days of gancyclovir infusions. I was also told something that freaked me out in fresh, new, and exciting ways. They explained that CMV can attack the retinas of the eyes. There was a very real chance I might go blind. They said it was a maybe, maybe not deal, they had no idea of the chances. They clearly stated they felt they owed it to me to know how serious this was and to tell me of this dire possibility. Words cannot describe how empty I felt at that moment. I thought I had hit a low before, but the idea of going blind was more than I can take. That is when I snapped and broke. I thought I had given up before but this was more than I could stand to hear. I was a broken man. I had no man cards left to lose.

 

My wife brought a walker up and sat it next to the bed. First time up, I had two people, one on either side. I want to think my wife was one of them. It was a struggle to get to the bathroom. Felt so good to get out of the bed. I was amazed at how little strength I had, but pleased I was getting to try. Oh my gosh, I got to have a shower. It was so amazing to feel warm water running across my skin!

 

Several weeks later I was released from the hospital, improved but weak. I still had my vision! I can’t explain how much of a weight that was lifted off my shoulders. My mother-in-law had come out of the coma. I was told she was conscious but was jumbling words. My wife told me she was asking about me and was really concerned. We all were relieved she was able to think that clearly. I practiced walking. I would walk around the house. I eventually took two walks outside. The first one I didn’t go far. I had trouble walking without weaving around like a drunk man. I literally could not walk in a straight line and had trouble staying on the side walk. The second time I made it around the block. I was exhausted, but I did it!

 

Then rest of September 2008 proved eventful. I realized my driver’s license was expiring at the end of September. I felt this determination to make the trip myself. I mean, I can get there and back if I have a full day to do this. I look back and realize I was stubborn to have done this myself, but this sense of pride or whatever pushed me to make this journey, to focus on what I can do. I gained strength each day, just a tad. I celebrated my 44th birthday. I think this was the birthday I tried to cook homemade pizza and set the oven on fire. Oh boy.

 

I will never forget my trip to the department of motor vehicles (DMV). It was surreal. This swollen, bald man got up very early. After my loss of independence this last time around in the hospital, I was stubborn as a mule. I was determined I had to drive, had to push forward. I planned the day, arranged food, and medications, and started out with a bang. No, rather, a slow shuffle to the car. I was tired but knew the regimen to press on. The drive was long and the traffic bad, but I persisted. I got there early, about 15 minutes before the doors opened, so that I would not have to stand in a long line. I drove into the parking lot and saw a line of people already at the locked front doors. Oh my. I joined them. I stood in a line of people and actually felt a bit OK, tired yet gratified I was able to make it. When we got inside and took our numbers, I realized the sensation of overwhelming fatigue was setting deeply yet again into my bones. I leaned up against a wall and closed my eyes. The sounds and buzz around me was not helping me. Then it began. I felt both eardrums pull inward with sudden pressure, then released. No, not now, please. The pounder began and I heard the next number called for service. It wasn’t mine. I wanted to leave, but knew I didn’t have a choice. I had waited too long. I simply leaned against the wall, ignoring everyone around me, making sure that wall did not fall over. No chairs were available for me to sit in. Next number was called, I inched forward, following the line. Finally my number was called. I didn’t want a new photograph taken, but it had been 12 years and I had no choice. The lady reassured me that I could get another one done.  I was very sick looking, ill as can be, pale, swollen, had this knot on my head (Ommaya), weak, and my head was pounding. I hated the flash of that camera. I hated the idea of having a picture like this on my driver’s license. I hated how I felt. I left hating that moment. I hated it. I hated my life and what it had become. Now I was having this memorialized on my formal ID almost like a cruel joke. I determined I would get a new picture as soon as I felt a bit better and looked better. I can’t recall the drive home. That scares me.

 

I had to get back to the oncologist’s office weekly for blood testing. I needed my last round of chemo. My blood counts remained low, too low to start chemo. Each time I went, I was expecting to be admitted for my final treatment. I had all my hospital stuff in my car, pink sign for the door included. I was told to wait one more week. This happened every trip.

 

By mid-October, it had been about 8 weeks since my last dose. I felt my time was up for chemo. I spoke with my wife. I called my mom and stepdad. I spoke with a few others. My body was not recovering. For better or worse, I withdrew from the entire deal. I called my oncologist and spoke with the RN for over an hour. She tried to talk me out of quitting. I held my ground. She used the phrase repeatedly “but you’re an RN, you should know these things.” She assumed I knew everything about cancer, oncology, the moon, weather patterns of the Earth, you name it. She pissed me off. I was the patient, not an RN. I was sick and not at my normal mental capacity. I was getting angrier by the moment and finally set the record straight and told her to back off.  I finally ended the conversation by saying it is my life and I’ll take my chances, I can’t take anymore. It is now the middle of October. My last dose of chemo was in the summer and my body is tired and is clearly indicating it can’t take any more. I took back control of my life and told them to leave me alone. I would be in next week to get cleared to go back to work. Thank you, have a nice day. I’m through. Enough!

 

I triumphantly returned to work on October 16th, 2008! I was so happy! I remember walking into the office and coming around the corner to my classroom. I could hear the substitute RN talking with the students. I introduced myself. It felt amazing to be back!

 

I want to shift gears for a moment. I have something deep and personal I feel I must get off my chest. This next part is hard to share, hard to relive, but I must. I received so much love. I discovered relationships matter more than anything in life. Humans are of the highest value and relationships are the highest expression of that value. I was capable of valuing relationships more personally and intimately than ever before. I was acutely aware now of how much I was loved. I was able to look back at an eight month nightmare and see so much love shown to me.

 

Why is this so hard to share, you might ask? I was incapable of returning the very love I was shown. I felt the love, received the love, and could not return the love.

 

Chemotherapy and stage IVb cancer stripped me of so much and showed me how weak I really am. The stark contrast between inability to do right, while being loved overtly by so many, was almost more than I could withstand. I was incapable of controlling my emotions. This was exceptionally difficult for me and I felt less a man, a poor father, and a lousy husband. I could be kind one moment, mean the next. I was filled with hope for a few hours, followed by stark realities that my time on this Earth might be cut short.  Long stretches of time in the hospital stole so much of my dignity. My daughters were busy with school yet having to face the reality of a dad who was quite sick.

 

I was no joy to be around yet tried so hard to be an example of bravery. My wife worked a full time job and tended to the family, house, bills, coming to the hospital, driving me around on her days off, and towards the end, her mother entering into a coma for several days. She did it all and did it willingly. I couldn’t have possibly asked for more from her. I regret to say I was incapable of returning the love.

 

Family, friends, and so many rallied to help us keep our household operating and sustained us so we didn’t lose the house. Getting a card from the family reunion with so many who signed it overwhelmed me. Getting a call from a niece on a weekend night to tell me they had just raised thousands of dollars 9 hours away in South Texas reduced me to a bowl of jelly. We were needing help with the van to keep it running and I was able to get the necessary repairs. Mom and Jim gave until it hurt to keep us from losing our house, to help pay over $2,000 for the port in my chest, sacrificed so much time and money to travel to help. Janice’s family cooked, cleaned, took the girls shopping for school clothes, bought them cell phones, helped Janice with emotional support, and gave so generously. Friends brought me movies to watch, lifted my spirits, brought me burgers and munchies and treated me so kindly. The profound highs and lows took their toll yet I was so grateful for all the love and generosity. Everyone was simply amazing and family close and far rallied to help in every way imaginable. I hope I didn’t forget anyone, please forgive me if I did.

 

So what is so hard about all this you might ask? From the outside world, I was given the welcome of a hero. I was treated like a king. People went the extra mile for me and my family. It is natural to encourage a cancer victim and help them make it to the next day. We all want a cancer patient to survive. I received many compliments and was told innumerable times how brave I was, how good I was doing, and people would say some variation of the following to me: “if I were in your shoes, I wouldn’t be doing so well.”

 

If only they knew the truth how I really felt inside. I’m going to tell it as I recall it and I assure you, I remember well. The world saw one thing and heaped praises; my family saw another side of me and loved me unconditionally during my volatile swings. Burkitt’s Lymphoma and aggressive chemotherapy made me sick. I was not well. I was not well physically, mentally, or emotionally. I was not pleasant around my wife and daughters when the outside world wasn’t looking on. I can honestly say my inability to return the love shown to me is my greatest regret. My desire to be sweet to my family was strong, yet my inability to fulfill this desire just about killed me. I could have at least been kind, or quiet. Instead, I was an angry man on the inside and outside when the world was not looking on. I was filled with so many contrasting emotions that I was difficult to be around. Yet I was treated as a hero.

 

I regret I did not treat my family as kind as they treated me. I witnessed the true definition of grace: undeserved favor. It is one thing to have a bad moment here and there, but I was difficult more than not. I did not deserve the kindness I was shown; they returned to my side to help me day in and day out. My wife and daughters put up with me and I assure you it was most difficult on them.

 

Want to know the hardest part? I was a man who was fully aware of what he was doing, but was incapable of doing better. Just as I couldn’t control sleep, control medical appointments, stop bruising, couldn’t make my own decisions, and stop strange discharges out of bodily orifices in public places, I could not control my emotions and outlook in private. I tried, trust me, I tried.  I tried and I tried. I failed so many times and was a man trapped in a body that was not his to navigate physically and emotionally. The torment of knowing what I should have done while being pushed beyond my ability to contribute meaningfully to my own surroundings in a positive way was perhaps the single greatest heartbreak for me. My family deserved better and I feel that I failed them. I did not fail them by choice as much as circumstance. What others saw as a hero, they saw an angry sick father and husband. I have made peace with this as I realize I was not in control of much of anything. My lack of control does not stop how bad I felt over how I treated them.

 

I salute my wife Janice and my daughters Andrietta and Chauncey for being so patient with me, extending to me the very kindness and grace I did not possess to return back to them. I love you all the more for your grace and kindness. You cannot know how remaining at my side during that time and the recovery period the last few years have meant to me. I will never be able to fully repay you, but intend to do my best to be there for you in your times of need.

 

You might ask, why would you share something so personal Robert? I’ll tell you why. I hope my words can help some others to have as much grace with their family members who are going through devastating illness. I seriously doubt I am the only one who has gone through such a stark contrast: hero to the world, difficult to my family. If my words can shed light on the private hell that families go through, it is worth the disclosure. We all want to keep a brave face. I’m sure some do better than others with kindness. Deep behind tragic illness is a family stretched, pushed to their limits, and flailing about to recover after it is all over. What the world doesn’t see because no family really wants to share it, is the power of a sick family member to bring an entire family to its knees. We keep a brave face for the outside, try our best to not fall apart in private. The daily wear and tear of having a loved one so sick is beyond demanding and pushes every person in the household to the brink of their limits.

 

I am an active member of the Burkitt’s Lymphoma Society. We have an active private forum for caregivers and those who have had Burkitt’s to help those suffering with this powerful cancer. We have grown close as a group. We share. Trust me, what I have shared is something experienced by other families. Such overwhelming long term illnesses push any family to the brink of their strength, sometimes families break apart. Sometimes they rally closer. Either way, it is so difficult and the inside members get to see everyone at their best and worst. Now that this disclosure is over for the moment, let’s resume normal programming content.

 

As Paul Harvey would say, “Now for the rest of the story.”

 

When I returned to work, I had one major surprise waiting for me that was truly unexpected. I sat in my office and the chair was not my chair. I couldn’t believe how hard the chair had become; I felt I was sitting on metal. I could not believe someone had switched my original comfy office chair for some tired used piece of nothing. This one had no cushion in the seat! It was nothing but metal. A fellow I worked with brought bubble wrap from the back and it made a cushy soft place to sit. I spoke to the secretary in the office next to mine.  She assured me that was the same chair. Turns out I was the one with no cushion in the seat, not the chair.

 

Not long after I returned, the same secretary shared with me about being a lifetime donor for Carter Blood Care. She gave platelets and blood as regularly as they would allow. She had done this for years and is a lifetime donor. She mentioned she had asked Carter to check if her blood was a match with mine. It was. She explained that she was the primary donor of platelets and blood, straight from her to me.

 

It took a moment to sink in. The lady who worked next to me had been supplying my blood needs this whole time! There went another man card. I wept and gave her a big hug.

 

Please give the gift of life!

 

Life is a trippy adventure now. Recovery from so many long months of chemo and aggressive cancer was not what I expected. I am a man of gratitude most of the time. I can work. I can drive. I can still do things around the house. I have regained control of most of my body. But I have not returned to the old Robert. I have had to grieve over losing my old self. I am not the same man. I wish I could say “I’m a better man.” I suppose that is true in some ways, but physically, nothing could be further from the truth.

 

I am still working on accepting “The New Me.” Due to the severity of the cancer and the chemotherapy, I have had ongoing challenges. I could go on with a list of what I deal with now, but let’s suffice it to say I am grateful to God to be alive, to be working, and to have another day to extend the kindness, grace, and mercy shown me. I do not measure up to the standard I would like physically. I take life at a much slower pace, being careful to measure out my limited energy.

 

Not every day is easy. When I have some really down moments, I reach back and recall there was a day when all I wanted was to get out of that hospital bed and return to work. I open my wallet and look at my drivers license picture and stare at the bald swollen hairless man.

 

The picture on my driver’s license has not changed. I now keep it in my billfold proudly as a token, a memory, of a day when I simply wanted to be able to work again and leave behind the torment that is cancer.

 

I still have the pink sign that hung on my hospital door for nearly 8 months. I got it laminated and will keep it forever. I still have the superman shirt, the Ommaya reservoir tube (yes the surgeon gave me one!), and scars on my physical body. The headaches slowly left and I haven’t had a good ear popper in a while.

 

Life after Burkitt’s is not what I thought it would be. I thought that once cancer was over, it was over and done with. Either I lived or didn’t. That isn’t true in my case and many like me. I am filled with gratitude that I did not have before cancer. Relationships matter so much now. Petty small things seem more just like that: petty. I see life through a new lens of how prevalent suffering is in this world. I find I can cry at the drop of a hat. I do not have the energy I once did. I don’t take work and the ability to work for granted. I have to be so careful now about infections and doctor visits. I have learned how expensive health care is and how much good health is really worth. Smallest acts of kindness can have lasting impact. There are some really good people in the world.

 

I think I would have to end on the topic of love. I set out in 1999 as an intentional life pursuit to fulfill the greatest commandment: Love the Lord your God with all your heart, soul, mind, and strength. Love your neighbor as self. I would have never thought that something as devastating as cancer could teach me so much about love. I initially felt I had been dealt a very unloving situation. Maybe that isn’t true when I consider the depths of what keep coming to my life these days. Love has increased so much for me, conscious love. Cancer began a powerful search for what a makes a difference in this life, in my life, in others lives. I find I have an increasing grace to offer others that wasn’t present before. All of this challenges me to not be indifferent, to make a difference, to extend love where I might not have before.

 

I suppose I do have more strength than I realized.

 Submitted by: Robert Baxter

 

 

My battle with two Cancer’s.

Lomogram_2013-01-30_11-12-12-AMMy journey with Non-Hodgkin Burkitt’s Lymphoma started when I was 19. It began with mild abdominal pain on my lower left hand side on Boxing Day of 2010, of course I didn’t think much of it however the pain was getting harder to ignore as each day went on. At week six the pain was so bad it was beginning to cripple me so I went to my local General Practitioner with a lot of worry and speculation, the doctor sent me for tests such as an Ultrasound because my older sister has Chrone’s Disease (which is inflammation in the small & large bowel) so naturally I was worried about my health I didn’t know what to do.

In late January I went in for my Ultrasound, I was very nervous grasping my mother’s hand with immense worry. I got called in and the nurse began the test, initially he didn’t see anything out of the order, however he said to me my doctor ordered an upper abdominal test, rather than a lower but he said “I’m not meant to do this but I will anyway” turns out he found something he himself couldn’t wrap his head around so he asked for the specialist which isn’t a good sign, they asked me all these questions about my sisters Chrones Disease and later on they demanded I got a CT scan done.

The Monday after my Ultrasound on my bowel, I was awaiting for my results however that day I began to get really bad diarrhea pain so I rushed to the bathroom and I noticed the toilet was covered in fresh blood, I began to cry and I felt helpless, I had no idea what was happening to me. I rushed to my doctor again, and he told me the results which were not looking good. He began his sentence with “your bowel is beginning to die, you have an intussusception of the bowel and it’s telescoping in on itself you need to be operated on immediately”.

On February 12th 2011 I had the operation, they fixed the intussusception and they removed 11cm of my large bowel and 3cm of my small however they told my parents they found a tumor the size of an orange inside my large bowel it was the cause of the intussusception, the bowel basically thought the tumor was food and it kept trying to swallow it resulting into the bowel telescoping in on itself. So after the operation I was recovering very well and very quickly I had to stay home and rest for six weeks, the doctors who operated on me said they’d call me in 2-3 weeks with the pathology results. A week went by, and the phone rang I was on the computer and mum was vacuuming in the kitchen, I answered and the same doctor who operated on me told me to come down as soon as possible they have the results, I honestly didn’t think anything of it, however it was serious news, news that changed my life forever. The doctor sat adjacent from holding his doctor notes and the results and he said “Unfortunately, I have some bad news you have lymphoma” I didn’t know what lymphoma was until I saw mum crying which clearly meant it wasn’t good. He told me it’s a type of blood cancer, and I needed to begin Chemotherapy as soon as possible so immediately I froze, I went numb and felt like a million responses were running through my body all I could manage to do was cry and cry and cry, the natural response was “why me, what have I done to deserve this, am I going to die?” but deep down I knew I was going to be okay it was a battle I needed to face and one I felt accomplishable especially because I have amazing support surrounding me.

Before my chemo started I had to get a PET scan performed to see where the cancer was in my body fortunately there were maybe one or two cells floating around however I had a glowing nodule In my thyroid, which was left alone to see if the chemo successfully removed it. In late march, 25th I believe, I began my first round of Chemo, I was having three rounds of immense treatment, I responded well to most of them however the killer amongst the pack was the Methotrexate with was administered over 24 hours in the later stages of each round. It completely ulcerfied every tissue lining throughout my body including my mouth so eating was very difficult and I lost about 20 kilo’s, I was about 88 kilo’s and went down to 65 kilo’s.

After treatment which was finished late June of 2011, I was told I was in remission and have been for 15 month now. I put on all my weight again, went back to my life job which is Visual Arts, and finished it with great pride, however I was referred to an endocrinologist for this nodule that was enlarged in my thyroid and after a couple of appointments I was told if the nodule is the same size as the previous scan we would leave it alone and just monitor it, which after the few tests I had done the nodule was the same size as before so in a way it was a good sign that it wasn’t growing. But after the results came to my specialist he asked me if I wanted to take this investigation further with a biopsy to rule out any cancerous activity, he said I probably didn’t need to have it but a voice told me I should and I did, luckily for me I made the right decision the biopsy showed a carcinoma which was the nodule. In the following weeks I had an operation of a total thyroidectomy and the pathology results showed papillary thyroid cancer on the right side, and a beginning of Follicular thyroid cancer starting on the left. I am now very much happy with how my life is, I am taking daily medication for having no thyroid and I’m beginning a full time Bachelor course in Fine Arts now, I’m hoping 2013 and the rest of my life is all surrounded with happy and positive energy. I have learnt so much from this experience and have lost a great deal to Cancer, so my life is walked with pride and a fighting spirit for me and my friend.

Id just like to say thank you for reading my story and a big thank you to the medical staff I had throughout my stay in hospital without modern medicine I wouldn’t be here typing my story to you amazing people who have also battled it, In a way I’m happy other people have gone through a similar journey because now I don’t feel so alienated, and I can talk to people who understand the trauma I went through beginning, during and after this whole episode.

Submitted by:: Rhys Schofield

Jonathan’s Battle

Our neighbor and very good friend has a son going threw this horrible fight right now. He seemed like nothing bothered him rode to work everyday and enjoys riding his motorcycle with friends and family. Never did we know this would happens to someone we knew and so young. His son was diagnosed with aggressive burkitt lymphoma just last week. They have been so worried for their son. I have never heard of this but in the week he has had 3 treatments .of chemo and has to let his body rest before they can do anymore. I know all we can do is pray the good lord above and see what comes.

Submitted by: Lisa

Tim Paul

 

I would like to tell this (condensed) story of a young man who loved life and then got Burkitts Lymphoma. Tim Paul was 25 years old in 2010 when he started to get symptoms. He always had a great deal of energy. Tim had played ice hockey. He was in four adult leagues, including deck hockey. He went snowboarding every winter. He was certified in scuba diving. Tim had just completed the 1st level for USA Hockeys Coaching Education Program. He wanted to work with kids. Tim was a mechanical engineer and was to begin his classes for a masters degree in engineering management. He was doing all these things while working a full time job and remodeling his house he had just bought. Tim had a wonderful girlfriend Amy and alot of great friends. I believe the headaches and night sweats started in January of 2010. Sometime in February he started to have swelling in his abdomen and felt a swollen lympnode in his groin. Tim had asked my husband “how did you know if you had cancer” (my husband has non-hodgkins lymphoma)? Tim looked ok but I just knew something was wrong. Alarmed by his symptoms, I wanted him to go to our primary care doctor to get checked out. When tim called for an appointment in February the office staff said they were not taking any new patients:( He found another Dr office and got an appointment in march. I hope all who read this realize with BL time is ticking away!! When i talked with tim after the app, the Dr had told him there was nothing to worry about. They did no blood work or tests!!!then the doctor gave Tim a tetanus shot !! About ten days later Tim could barely walk and his jaw caused him great pain. He was taken to the hospital. There he was dx with non-hodgkins lymphoma and started on r-chop. after a week we switched him to another hosp where my husband was being treated. There we were told that tim had stage 4 burkitts lymphoma. He started treatment with hyper-c-vad and radiation in July. by september BL had continued to spread, and was growing faster. tim tried to stay upbeat but it was dificult and the long hosp stays were hard on him because of the severe back pain( yes we asked for better mattresses-no we did not get any). Doctors decided to go for a stem cell transplant . by october his spleen rupured and about two weeks later he had emerg surgery for a tumor on the base of his skull. Tim passed away October 28,2010. We were told he had the most aggressive BL they had ever seen. Have no clue how he got it ! loved ones lost a great person and good friend. It is so important to insist on getting lympnodes checked out. Only a small % of people will ever get BL but its’ easier to fight if it is caught early. And there is the problem with most likely all cancers, is how do you catch them early? Think of all the money that goes to research $$$$$$ People who are diagnosed with BL have very different outcomes. Few people have even heard of it. One of the last things my son Tim Paul said to me , was that he had a full life. I miss his laughter very much , and the way he enjoyed life. For those who have BL-keep fighting. For those who are working on finding a cure- keep searching. Cancer is a bitch!

Losing to Burkitt’s

The date Thursday, April 22, 2010 will remain in my head for the rest of my life. This was the day that changed my life in a way that I would never have even thought  was possible.

On March 18, 2010 my husband went to get a tooth pulled.  He had a mitral valve prolapse, so his Dr had always told him to take an antibiotic a week before going to a dentist.  But, this particular dentist said he did not need it.  She pulled his tooth and he came home.  He was sweating very bad.  (Actually, he had been sweating extremely bad two weeks before this, he was putting hard wood floor down in our kitchen and he was drenched in sweat.) The following Monday after his tooth was pulled he was in sever pain in his jaw.  I called the dentist from my work, (I worked for a family Dr) and asked if the dentist could see my husband, I told them I thought maybe he had dry socket..they said send him over.  After an hour my husband came to pick me up from work, he had a can of dr pepper holding on his jaw.  He said she said it was ok, to take aleve and it was probably nerve dammage and may have pain for up to a year.  We went home and he went to the bathroom.  I walked back to the bathroom and he was sitting on the commode with his eyes looking forward, face gray, and not answering me..I was holding him up on the commode, telling him not to do this to me, I yelled for my 16 yr old daughter and 9 yr old son to help me..they came in and my son panicing, they helped me get him into the kitchen and to call 911…he kept going out on me, I kept trying to keep him awake..he was going into septic shock..as we arrived at the hospital, they started working on him. They put him in ICU over night, they said he needed a TEE and had to be sent by ambulance the next morning to a different hospital 2 hours away..a surgeon came in and said the CT scan showed something in his stomach, but could not see it well, but we won’t worry about this right now, we need to worry about the heart.  The Doctor’s all thought he had infective endocarditis. (infection around the heart) We arrived the next day to have the TEE test done, (scope inserted through mouth down into esophogus and can see completely around the heart)..the cardiologist said that he did not believe he had an infection, but there was a small place he could see, but will go ahead and treat it with IV antibiotics for a week in the hospital. On Monday after a week of antibiotics, they discharged him and the cardiologist said his heart would outlive him, everything looked good.  I told the nurse and hospitalist that his abdomen and ankles were very bloated and swelled..and this never had happened before.  They told me it was just all the IV fluids he had all week. We went home on Monday, and on Tuesday was readmitted for swelling in the abdomen.  This time they admitted him on the surgical floor.  He was tested over and over with CT  Scans, the Surgeon kept saying he could not see clearly and that the Views were, “shitty”..they started draing fluid off his abdomen and put a pediatric catheter on his abdomen..this still never helped the views..on a Wed after being in the hospital amost 2 weeks, my husband asked the Dr, “Do you think I have the “C” word?” The Dr said, “NO. you don’t have cancer, your not sick enough to have cancer, you don’t look sick and my cancer patients look sicker each day I see them.”  My husband asked him if he could not figure out what is wrong to just send him across the street to WVU Hospital…the Dr said just give me another day, and that he had 10 Dr’s working on this. After that, I pushed my husband down to the Medical recorda and got copies and started reading them..I called the Dr I work for and confirmed what I thought I was reading…he has cancer!!  His LDH was extremely abnormal, his WBC were 23,000…need I say more..He told me to tell the Dr to call his Cell and that he needs a full body PET SCAN…needless to say, the Dr never called my Dr…and the Hospital never done a PET SCAN…the next morning, I confronted the Dr..I looked him in the eyes and said, “He has cancer..” He said to me why do you say that?…I told him we went and got copies of all his records and I read them..he then looked at us both and said, they were moving him up to the cancer floor and doing a bone marrow biopsy in the morning (Friday, April 16th, 2010) and you can go home for the weekend..the Dr said, let’s hope it is lymphoma and not leukemia..my husband and I both had millions of questions..they stopped us and said we will have all the answers next Wed, April 21, 2010..you will come back to the hospital be readmitted and start chemo on Wednesday, April 21, 2010…We went home an hour after the biopsy..(my husband wanted to see our little boy, he wanted to have Easter since we missed it with him while in the Hospital..) My family had a bed downstairs set up and oxygen, walker…etc..waiting for us..we were home Friday, Saturday we had our Easter and I video taped it..my husband asked my two daughters from a previous marriage to come over to him..he hugged them and told them that he loves them(he had never ever done this before)…After being home Friday night, Saturday night..on Sunday morning I had the Dr I worked for do a home visit…it was not good..his abdomen was soooo bloated he could not eat, drink, very hard to breath and very very uncomfortable..He was taken to our local Hospital again and finally a Dr was upfront and honest..he looked at me and my mother in law and said this is aggressive and fast and you need a bigger hospital for this..He gave us the choice of WVU, Cleveland Clinic or Allegheny in PA…My husband said WVU, because of being near home.  The ambulance took him at midnight Monday, April 19, 2010..As soon as we got there, Dr’s, nurses surrounded him drawing blood from both arms..talking this and that..my husband,( Don) and I looked at each other in terror…I finally spoke up and said they gotta slow down, we don’t understand what they are saying…so, one spoke to us..I explained that at the Hospital across the street, ran the same tests and we would have results on Wed and have chemo Wed..they said they can not use them..they have to do there own..so, he had another CT, two more bone marrow biopsies…and finally a full body PetScan,,but, the results would be in on Friday, April 23, 2010..and start chemo on Friday and will have the name of the type of cancer and how long he has..they came in and admitted him as having ACUTE KIDNEY FAILURE!! WHAT?? They started him on 5 hours of kidney dyalisis Monday afternoon..5 hours each day..it drained him..it was like it took the life out of him for a few hours..on Wed, April 21, 2010 they moved him to the Bone Marrow Unit…(This scared him and me, he prayed that night with me, then telling me I had to go on for the kids and I would find someone…etc..spoke of what funeral home, what clothes..etc..) I kept saying he will be fine, we will fight this thing..etc. On Tuesday he could not walk anymore, due to them hitting a nerve in his groin when they put in his tunnel cap, for dyalisis..so, after I complained they said on Thursday, April 22, 2010 at 1pm he would have surgery and they would do three or four things at one surgery..they were putting in a port, insert the tunnel cap in the chest area and take the groin area one out so he can walk again, and then do a biopsy of the abdomen…Wed, April 21, 2010 was a very lonnngg night..at 1 am his alarm kept going off due to his oxygen level dropping..etc…at 6am they came to get him for kidney dyalisis…we went..this time it was much different..usually they would make me wait in the hall until he was hooked up..this morning, Thursday April 22, 2010…she let me go in with her and watch everything…after 3 hours he had to pee…after finding a urinal he wanted to stand, the tech said he can’t, you’re hooked up to dialysis…this upset him..I helped him..he could not urinate, he said he couldn’t laying down.(he hadn’t urinated for two days) then, at 10:00 am he started having left arm pain and nausea…I got the tech and told her he has never complained of this before..I also complained his BP was very low, 96/44…she said that the Dr wanted it low due to dialysis and going into surgery at 1pm…he finished his dialysis and they unhooked him and I could not see his BP any longer, all he has was his O2 on him..she came and gave him a shot..I asked what it was for, she said pain..I argued he did not want pain medications..my mother in law said they know what they are doing..so, I never said anything else…a few minutes later the Dr came in and asked my husband what his pain scale was, he held 3 fingers up..the Dr looked at the tech and said he does not need the full dose of dilaudid…The tech said I done gave him a full dose…and they walked off…my mother in law went up to the room with his sisters to wait on me and him to get up there because the Dr’s wanted to speak to us..Don and I waited for them to come get us, due to him being bedfast…I was holding his left hand and he told me he was so tired and just wants to sleep and asked  me how much more..I told him after this surgery at 1pm we would be done and start chemo tomorrow…(he had told me last night to go all the way with him..and he held my hand and looked at me and said, “You know what I mean.” I said yes..

As I held his hand through every dialysis, every test, every biopsy…never left his side the whole 23 days in the hospital, slept in chairs beside him, with my head near his chest..this day was much different holding his hand….

He squeezed my hand till it was blue, I yelled for a tech, get a Dr, get a Nurse..”I could not get his pulse..his eyes were set…after 15 minutes Dr’s came in with a crash cart, I looked at them and said you are all too late, he is gone..he is gone..they made me go into the hall, saying I didn’t need to see what they were going to do…my mom in law, sis in laws came running screaming…they heard code blue..I cried to them he is gone..my world is gone..after 25 minutes, the Dr’s came to me…the youngest one spoke to me..”We tried for 25 minutes to get him back..he is gone”…I looked at him and said,”You promised me you would help him, you are suppose to be the best..”How do I tell our 9year old son his daddy is gone?”

I set with his body for two hours until my parents brought my son and daughters..and my stepson arrived…

The Doctors came in while I was on my knees resting my head on his chest holding his hand..he was getting so cold…The Doctors wanted me to donate tissue to WVU research to help others for Burkitt’s….they wanted me to do an autopsy saying it would bring closure to me and my son in years to come..I done what they wanted..

My soulmate, love of my life, my world, my bestfriend, my husband and Logan’s daddy died on Thursday, April 22, 2010 at 11:35 a.m. after finishing a dialysis treatment..the death certificate on line# 1 cause of death was..PULSELESS ELECTRICAL ACTIVITY…#2cause of death Lymphoma

His autopsy showed Burkitt’s Lymphoma…the mass was in the lining of the stomach and had matastised…it was in his kidney, prancreas, small intestine, liver, prostate, esophogus…

And to this day, after 2 years, 5 months I still have no closure and don’t know if I ever will..it has been very hard on me and my son..our lives have changed so dramatically…two seasons I dislike with a passion is Fall and Spring..every Fall I go through a depression like no other, it was his favorite time of the year..he would smell the air and say,”Do you smell that?” (He was a big time hunter) And, Spring is when we were in the hospital together and I left the hospital by myself leaving him for the first time in 23 days…the longest ride I ever had..

 

Cindi E. Arbogast

 

Had blood products??

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Hello,

My name is Hayley Howell, and my husband had this horrible disease. Each year I do a Blood/Bone Marrow drive in honor and memory of him.

You can also read our story on this website or read our whole journey in Unwritten: A Love Story by Hayley Howell found on Amazon.com.

Oklahoma Blood Institute has an amazing program where each donor gives a credit and I use those to give back to everyone that is currently undergoing treatment or has had Burkitt’s!

If you or your loved one has had any blood products and would like to use these credits I would be very honored to give them to you as this is the goal in mind for doing these drives each year!

I would be honored and blessed to give these credits to you!

Please contact me either by email or phone:

hayhowell@cox.net

(918)639-4226

God Bless!!

Vikki Hill

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In february  ’11 my 10 year old son started talking nasely, I thought he may be getting a cold so tried antihistamines, but when I looked in his throat I could see a mass at the back and his uvula was pushed to one side, after seeing our GP and a short spell in our local hospital we were referred to Great Ormond St in London who did a biopsy and my son was diagnosed with Burkitts of the tonsil & soft palette, his tumour was the size of an orange, a few more days and he would have just suffocated in his sleep, luckily even though it was a large tumour we caught it early enough to be still grade one at diagnosis. 6 months of chemo, and intrathecal steroids, we reached remission, Now 15 months post treatment and the chances of it coming back down to 2-3%, life is finally getting some normality back!!! At our hospital, only one other little boy has had Burkitts in 3 years, his presented in his abdomen, and his was at panic stations a few times also but he too is at 18 months post treatment, his family are getting some normality back also!!!

Burkitt’s at Eighteen Months

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I was diagnosed on August 2nd, 1993 with Non-Hodgekins Burkitt’s Lymphoma. I was about to hit eighteen months old on the 25th. My diagnosis went like this: My grandmother babysat me on a regular basis, and noticed that I had become lethargic and had trouble breathing. She forced my mother into taking me to a pediatrician. The pediatrician took a quick look, and told my mother “She’s fine. Probably just a flu.” However, my mother knew otherwise and wasn’t leaving without an explanation on what was wrong. She refused to leave until I had another check. Sure enough, I was sent to Sick Kids Hospital (Toronto). The cancer at that point was in my lymph nodes, tonsils, and had spread to my right kidney. I fought the Burkitt’s for about a year. I’m fortunate that I was too young to remember it. I grew up with (and still take) constant tests. Cancer has partially been a gift to me in the sense that it made me more compassionate towards other people. It’s given my life a bit more meaning, as well. As horrible as the disease can be, there’s always a light at the end of the tunnel. What doesn’t kill you may not make you stronger, but it will certainly change you for the better by giving you a better understanding of your importance in the world, and how important family and friends are. I hope this gives people suffering from any disease, for another or for themselves hope. Don’t take the people around you and yourself for granted.

Infant Burkitts Lymphoma Survivor

Hi,

My name is Taylor Batson. In Oct. 1992, I was diagnosed with Burkitts Lymphoma at the young age of one and half years old. Oddly, after a large bout with strep throat.  My family flew me to St. Louis Children’s Hospital for diagnosis and treatment. That act alone saved my life. My cancer caused my parents to loose our family health insurance. My mom was able to speak with Hillary Clinton as to the problems surrounding cancer patients and their families. This world was new to both our family. The staff at the hospital were awesome they became our second family. There were a couple of us with Burkitts. The diagnosis caused the staff to advise us of the grave situation at hand and that they were never sure if this was going to be manageable or not. At one point they asked my parents to consider making funeral arrangements in case. The treatment was as painful as the disease and we all suffered as a result. In Feb. 1993 I went ended treatment and we waited. The cancer was so aggressive it might return. Leukemia was also in the background waiting to rear its’ ugly head, as it does with other cancers. We waited. After five years in remission I was considered cancer free. Getting health insurance on me was not going to happen at that time. It was just a nightmare for my parents to grasp. But I am a healthy athletic 21 year old male. To this day, I have only video and pictures as I do not remember any of it. My mom has stories. Wonderful ones.  Ones that are just short of tiny miracles adding up to this big one = my life. St. Louis Children’s Hospital and Washington University-an incredible teaching hospital are the ones who kept tweaking the treatment no matter the cost have my full gratitude and admiration. But the most praise goes to my parents who also had four other children to have to raise while going thru this together. So we are all cancer survivors as no one goes thru this alone. It takes a village.

taylor burkitts

Taylor’s News Paper article from when he was just 2 years old

 

Robbie the Brave

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This story is not about me but rather my sister, Roberta or Robbie, as she’s known to most. It all started in February when she noticed a mass in right submandibular area. She went to the dr and was treated for a salivary gland infection. When it didn’t resolve, she called me and asked what I knew about salivary gland infections. I work for an ENT and know all too much about these sort of infections. My dr was out of town so we had to wait a whole week before seeing her in office. This was the longest week of my life!! We did the first biopsy of her lymph node in office and waited another incredibly long 3 days. The first pathology report came back as an inflammatory process and we treated once more with antibiotics. I checked in on her daily. She was hopeful that the antibiotics were doing their job. And they would have had it been an infection. Her lymph node was unchanged so we ordered a second biopsy. After another week and a half, we had our diagnoses of Burkitt’s’. My sister was very confused because she has always been a very healthy person and didn’t feel sick prior to her being diagnosed. She went and met her oncologist and the people she would get to know very well over the next several months. She has maintained her courage, strength and spirit like a champion. Like an athlete training for a marathon. She has just recently finished her fourth and hopefully her last cycle of chemotherapy last week. She sports a wig or a wrap on some days. She also likes to feel the wind on her bald scalp. She looks forward to having a haircut and getting highlights. So do her two daughters who have been her biggest cheerleaders. They have been just as strong as their Mom through this experience. My sister deals with most, if not ALL the side effects they warn you about at the beginning of treatment. She doesn’t like to complain….much! Ha! She puts on her makeup almost everyday and goes to work most days. She has a spirit about her and looks forward to the day when she can look back and this be a distant memory for her. She has an excellent prognosis! No other activity on her last PET/CT. We’ll take that kind of news any day. I have learned many life lessons from watching her battle this disease. She didn’t want pity, she didn’t want tears, she didn’t want people to look at her like she had cancer. She wanted everything to be normal. But I think she did all of that, for all of us! She has had her catheter removed and has only a few scars on her upper chest. These are her battle scars. My sister is one of the lucky ones. Isn’t that an ironic statement….most people would consider cancer unlucky but we know God never gives us more than we can handle and He definitely carried her on this journey. God is great. My sister is pretty awesome too. Congratulations to my sister! This is her victory.

Joshua Meeker

 

My son, Joshua, was 12 years old when his battle with Burkitts began. This healthy, normal pre-teen began to get sick. First it was the strep-like infection. Then it was the constant nausea. The weight loss. The decrease in activity. Joshua one day began complaining of excruciating pain in his teeth. We did the doctors, the dentists, the bloodwork, the MRIs, the infection control specialists…. all with no results. No one could figure out what was wrong with him. This was the worst time. Joshua missed a month of school during this time period and lost twenty pounds. We were pulling our hair out in desperation.

Finally, on March 9, 2011, Joshua doubled over with stomach pain. After a long, miserable night, I took him to our local pediatric emergency room. We were there for twelve hours. Even though his WBC count was unbelievably high, the doctors couldn’t figure out what was wrong. Xrays didn’t show much except for a little fluid in his abdomen. We were told that perhaps it was his appendix, or maybe kidney stones. I tried telling the ER doctor about the month he had had, but we were told that it wasn’t relevant and perhaps Joshua was just under stress.

One wise resident decided to order a CTscan. A half hour later we were told that Joshua had two grapefruit-sized tumors in his abdomen and would be taken immediately to the pediatric oncology unit. We were told that he had either Stage IV lymphoma or leukemia. Turns out he had Burkitts Leukemia (just like Burkitts lymphoma except his bone marrow was riddled with the cancer).

That first week was hard. He was started on chemo right away and suffered terrible tumor lysis. His whole body froze from the lack of calcium, his kidneys were failing, and we were warned to expect a seizure. Thankfully that never happened.

Joshua spent most of the first four months in the hospital between the chemo and the infections. Morphine became our friend. But the end was in sight! Joshua was scheduled to have a total of nine chemo rounds and by the end of the 7th, and solidly in remission, he was starting to feel a bit normal again.

Then, out of the blue in August 2011, he got a headache. Usually that meant that he needed a blood transfusion, but his counts were fine. We were told to give him a stiff cup of coffee! But three days later, with no relief, Joshua told us that something was wrong and he needed to go to the emergency room.

The cancer was back. This time in his CNS. The hospital called in an off-duty OR team to do his bone marrow and spinal fluid tests. Joshua began having seizure-like activity, his face became paralyzed, and he had an abnormal EEG. We were told that he may not make it through the weekend.

Well, he did! We were told that there was no protocol to treat him, and that we should consider palliative care. But our wonderful doctors found five other children from around the world whose cases mirrored Joshua’s, and we pieced together a protocol from the ones they used.

Joshua had two weeks of cranial radiation, and had an ommaya placed in his head to be used in place of the intrathecal chemo we’d used before. He had another ten rounds of chemo and went off treatment 4/12.

I had never heard of Burkitts before my son got sick. Our hospital had only seen a few cases over the years. Most of our oncologists had never treated anyone with Burkitts. Joshua had a very difficult year. He missed half of 7th grade and all of 8th grade, being too sick to even tutor. Most of the year was spent in bed or in the hospital.

But God is merciful. He’s rapidly recovering from his battle and looks forward to going back to school in the fall. He has a full head of hair for the first time in fifteen months! During his battle with cancer, Joshua endured: 20-30 trips to the operating room, 6-10 trips to the emergency room, tumor lysis, facial paralysis, seizure/stroke activity, 3 days of stem cell harvesting, lung collapse, oxygen tube, intubation, dozens of blood and platelet transfusions, an ICU stay, hundreds of needle pokes, more scans than I can count, surgery to implant a port and the ommaya, and 17 round of chemo (oral, systemic, intrathecal, intraommaya).

Plus a few times when we were told we could lose him at any moment. This was the hardest thing I could have imagined going through as a parent, and we don’t know what the future holds. But for now, we’re thankful that Joshua is still with us, we have hope for the future, and know that no matter what happens, Joshua is being carried by his God. And that this fight has not been in vain. We’re both stronger people for having gone through this.

 

http://www.caringbridge.org/visit/joshuameeker

 

 

 

2012 Salt Lake City Marathon Nathan Lunstad– Burkitt’s Lymphoma Cancer Survivor

 

2012 Salt Lake City Marathon

Nathan Lunstad– Burkitt’s Lymphoma Cancer Survivor

In response to the Salt Lake City Marathon requesting submission of inspiring stories related to their marathon, I submitted my marathon battle story with Burkitt’s Lymphoma.

Just weeks before the 2011 Salt Lake City Marathon, which would have been my first marathon, I was diagnosed with Stage IV Burkitt’s Lymphoma, a non-Hodgkin’s Lymphoma (http://burkittslymphomasociety.com/). The week after completing a 20 mile training run I went into the emergency room for abdominal pain (March 23, 2011). This form of cancer is very rare and spreads very aggressively, with tumors doubling in size within 24 hours, so my condition deteriorated very quickly. Within a week of being diagnosed I was admitted to the hospital in critical condition with my kidneys failing. I was in the hospital for about a total of 3 months. Treatment was extremely aggressive, often including 4 chemo treatments in a day and chemo treatments to the spinal fluid.

The 2011 marathon was during my first round of treatment. I was very sick and weak, but had made an effort to walk short laps around the nurse’s station each day. A couple of days before the race, a good friend was able to pick up my bib number and shirt. The morning of the race at 7 am (the same time the actual race started) I started my “own marathon” of completing 26 laps in the hospital hallway pulling my IV and chemo cart by my side, and wearing my race shirt and bib along with my hospital gear (gown, mask, and gloves). Although 26 laps was the equivalent of about 2 miles, given how sick I was it took the entire day with several intervals of walking to complete the full 26 laps. I finished the last lap in the dark hospital hallway at about 10 pm. My marathon of 26 laps and the marathon of battling cancer turned out to be a bigger challenge than completing the actual 26.2 mile marathon.

After the first round of treatments as my body responded to chemotherapy I continued to walk everyday in the hospital (3-6 miles per day). Even though I wasn’t able to compete in the 2011 marathon, I attribute the training for this race as a big factor in saving my life. This conditioning gave strength and mental determination to battle the real marathon.

Today, I am miraculously free of cancer and have been spared many of the side effects of such aggressive treatments. After completing the marathon for my life, one year later I’m ready to complete my first 26.2 mile 2012 Salt Lake City Marathon.

Update Mon, Apr 23, 2012 1:01 pm

I finished the race!  One of local TV stations (KSL) did a spot on Sports Beat Saturday.  Probably the only time in my life I’ll make the sports section of the news.  The local newspaper also ran a story. http://www.deseretnews.com/m/article/765570067

 

The reporter put together a Youtube extended version of the clip used on KSL’s Sports Beat Saturday.

 

I had developed a knee injury during one of the longer training runs leading up to the marathon, which was causing some severe pain while running.  To be on the safe side I went to an orthopedic doctor last Thursday to have my knee checked out.  The doctor gave me the green light to run.  The knee pain was from the IT Band.  I was told that running with the pain would not cause any damage, but would just be painful and I would just have to endure it.

My knee hurt from the very start of the race.  Despite the pain I felt that I was able to keep a good pace and run with the main flow of runners up to mile 5.  From miles 5 to 13 the knee pain was extremely intense.  As a result I needed to walk long segments with short periods of running.  At mile 13 the pain went numb and I was able to mentally block it out.  I was able to push through and run almost the entire 2nd half of the race at about a 10 minute mile pace.  The last half of the race I was rarely passed, but ended up passing a lot of other runners.  My final time (from my GPS watch) was 5 hours 15 minutes with an overall pace of about 12 minutes/mile.  I placed 834 out of about 1,500 that entered the marathon.

As I was running and mentally dealing with the pain I was thinking how there is nothing like cancer and chemo to prepare one to cope with the pain of an endurance race.  A marathon is mentally and physically challenging, but is nowhere as challenging as fighting cancer!  By surviving cancer (also applies to our families and loved ones) we are tougher and stronger!  As cancer survivors we can accomplish great things!

 

Nathan

Nathan Lunstad
lunstad@gmail.com

Stuart Smart

 

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One day, like any other, I was at the office and went to grab a sandwich for lunch. That afternoon, I had discomfort in my abdomen that developed very rapidly that afternoon into a very uncomfortable and intense pain. That night, I was taken to the ER for a scan, and immediately had my appendix removed– as it was about to burst.

From the Pathology of my appendix tissue, I was diagnosed with Diffuse Large B-cell Lymphoma, as many with Non-Hodgkins Lymphoma are. Only on my 2nd and 3rd opinions at large teaching hospitals did they request the additional testing (Cytogenetic FISH study) to rule in or out the Burkitt’s variant. Glad they knew what to ask… as R-CHOP would NOT have cured me!

My story is at stuartsmartt.blogspot.com. Below is a post from right after my Appendectomy/diagnosis.

After lunch last Wednesday (11/12/08), I got what seemed like a stomach ache. Thinking it was something simple and temporary, I stuck around the office… in modest discomfort. When I got home, I laid on the couch but just couldn’t seem to get comfortable. A close friend of mine who is an ER doctor was kind enough to come by and take a look at me. I was very tender to the touch in my lower right abdomen. He suspected that it was either gas lodged in my digestive system that would eventually pass with time, or less desirably, it could be my appendix.

I tried to fall asleep, despite the discomfort, only to wake up an hour later just after midnight with the most intesnse and uncomfortable pain I’ve ever felt. It was a combination of being kicked full-on in the groin plus having a thousand pound weight sitting atop my bladder. Natually, I hobbled to the bathroom, trying to go. No such luck. When I stood up, the low blood pressure, coupled with the intense pain, caused me to pass out briefly — only to utter to Candace to I needed to get to the ER – and quickly.

I was unable to walk down the stairs, so I had to scoot. I must’ve yelled out to Jesus, audibly, a hundred times. Despite that unbearable pain, He guided me one baby step at a time to the car. Once at the ER, being unable to get vital signs on me, they proceeded to hook up an IV and deliver some pain meds. This was a nice surprise. Five minutes later, I felt neutral to good. Wow. I remarked on how happy I was that someone, somewhere, figured out what we can put in our bloodstream to disconnect us from our pain. What a concept. It took on a whole new importance and relevance when it was me who was being guarded from the pain.

After a CT scan confirmed that it was indeed appendicitis, I was eventually rolled back to a pre-op area and then finally into the OR around 4:45am. The general anesthesia was, again, a marvel to me. They removed the appendix laprascopically. One incision at my belly button to insert a cauderizing cutting tool, another small hole below my belly button to insert a camera/scope, and finally another small hole below that to pump my abdomen full of CO2. Wow.

I was fortunate enough to be the only male who was admitted to the OB/GYN floor for my recovery. Got some funny looks when people would come in and wonder why the male was tucked in bed, while the female was sitting bedside in the chair. Surely something wasn’t right about that. I spent a day there. Walking to the bathroom was pretty much the highlight of the day. Oh, yeah, and throwing up was an added bonus. Once able to keep down a little cup of sugar-free jell-o, enough progress was made to get the clearance to head home… which we did.

To fast forward, after some shaking (rigors) and a fever north of 101 and change, I had to head back to the ER two days later for an x-ray and some blood work. This revealed an infection due to the catheter used in the operation. More meds – yyyeah. So back at home, I slowly got back on my feet. I even hobbled into work the Tuesday after. Daytime TV made me do it.

Wednesday of this week is when it got interesting. I went alone to a simple post-op doctor visit at Piedmont where they were to make sure my incisions were healing nicely. And they were. The doctor then added that they had sent the appendix off to the pathology lab, as is customary, and the results had come back abnormal.

In addition to being “extremely enlarged” (instead of being pinky-sized, was >5″ long by >1″ wide), the cells demonstrated an abmormally active growth pattern consistent with a blood cancer called DIFFUSE LARGE B-CELL LYMPHOMA. Simply put, your lymphocytes are white blood cells that travel in a unique network among your numous lymph nodes, fighting infection and bacteria in your body. Mine are abnormal and propagating much too rapidly. This hyper-growth caused the appendicitis, and was indicative of cancer being in my body.

I spent the rest of the afternoon telling close friends and family. I am ever-grateful to all of these people who droppped what they were doing, sat with me, listened, prayed, and reflected on what I had just learned. Thank you, thank you. While this is only the very beginning, I trust you will be alongside me every step of the way and cannot thank you enough.

The very next day, I had a long afternoon with an oncologist. He said that my type of Lymphoma is a ‘good’ one to have, as it grows very aggressively, making it more responsive to treatment. While he would stage it (I, II, III, or IV, an indicator of how extensive the cancer has spread), the treatment protocols would largely be the same: chemotherapy.

The spcific regimen is called ‘R-CHOP’. This are a cocktail of chemo drugs designed to attack all of the growing cells in my body. He wants us to start in the next week or two. In addition to losing all my hair, it will kill my sperm count for an indefinite period of time. Candace and I have been trying to conceive for a few years now, so this is a particularly harmful side-effect for us. I am hoping I will be able to freeze some ahead of time to have on backup. In addition, nausea and immune system depression are the obvious side effects to chemo that I don’t like to think about.

In order to stage the cancer, I needed to have a PET/CT Scan (which I did today) and a bone marrow biopsy, which I went ahead and had done right there and then when I was speaking with the oncologist yesterday. I wanted to check a box — anything — to make some forward progress in my journey!

Having a bone marrow biopsy kinda feels like someone sticking a big needle into your pelvis and sucking out some of your bone marrow(!) I just hate it when they do that. I was lying on my stomach, making awkard noises and making rapid jittery movements — anything to distract me from the sensation of a needle thrust through the walls of my bone or the very life being pulled out, 5 ml at a time! One point worth mentioning, as the doctor’s muscles quivered to push the needle through my pelvis, he said, “yep, yep, good strong bones here…” I got a laugh… well after the fact, however.

The PET/CT scan was fun. I got an IV with a radioactive glocose inserted into me. It is a fluouride solution mixed at a nuclear pharmacy within hours of being administered into the bloodstream. After 45 mins of sitting still (no reading or iPods allowed, as the mental activity would draw too much blood into your brain), I laid on a thin gurney, with my arms above my head, for 30 mins in ‘the tube’ — completely still. It was interesting to see just how stong the mind can be when you feel the urge to scratch several itches — yet cannot.

And so here we are. 48 hours +/- after my world got a little more interesting. Thanks for sticking it out thus far. This blog will probably be the place to get an update on how things are progressing with my chemo, and hopefully I will be able to capture some of the sweet moments, called life, along the way.

I feel, at the outset, that this entire experience will be a faith-building (and strengthening) experience for me and hopefully those around me. Having no choice but to slow down in life will force me to connect my head to my heart a little better, and really tabernacle with the Lord in the here and now. That’s really the only place that He can meet us: not in the nostalgia of the past, or the fear of the future… but right here, right now. There is no grace for events that never come about, so let us not spend any time worrying about whether they may come or not.

Let us just sit for a moment, at these crossroads of uncertainty, and meet God right here. To Him be all the glory. It is well.

Ellie’s Battle with Burkitt’s

 

Ellie’s battle with Burkitt’s began on October 1, 2007. She was 14 years old and a freshman in high school. Ellie had not been feeling herself for about a month when we took her in to see our pediatrician. A few hours later we were headed to the Kentucky Children’s Hospital in Lexington, Kentucky. After a 5 hour surgery to remove a 2.5 lb. tumor and resect her intestines, Ellie was diagnosed with stage 3 Burkitt’s Lymphoma. She started treatments almost immediately. Over a 3 month period of time, Ellie went from weighing 125 lbs. to 83 lbs. Nausea was her constant companion. She had to have physical therapy to help recover her strength. She developed neuropathy a month after treatment ended. Day by day, she slowly became herself again. Today, she is a compassionate young lady full of hope and dreams. To read about Ellie’s journey, go to javascript:nicTemp();

Hunter Winship

 

 

December 2007 Hunter was 5 and started having problems with stomach aches, going to the bathroom, and turning a ghostly pale white. After FOUR times to the emergency room with a misdiagnosis each time we found out January of 2008 he was stage IV with Burkitt’s. Our lives were changed forever.  We started at Buffalo Children’s hospital of Buffalo, NY. The tumor was attached to his small intestines.  After the first round of chemo, his kidneys shut down and he went into kidney failure due to the tumor lices.  His blood pressure went way high and he ended up with swelling of the brain and ended up coding on us and then went into in a coma.  2 days in the UCI his kidneys started working and by the grace of god he woke up. Hunter had an allergic reaction to alot of the meds which caused numerous problems such as collapsed lungs. We were then transferred to Roswell Park Cancer Institute.  Hunter never smiled, laughed or talked to anyone the whole first 3 weeks we were at the hospital until one day a paper airplanes was flown at a incoming doctor. It was the first time he giggled so that started the airplane cancer goal. Burkitts made into  the spotlight in NY that year with Hunter.  After being aired on CNN, ABC, NBC, CBS, FOX, and the cover of yahoo, and Guinness Book of World Records we ended up with 2.8 million airplanes from all over the world.  Hunter is now 9 years old and the best “brat” a mother could ever ask for.  The burkitt’s Lymphoma Society has been not only a blessing for me and others but it has helped me GREATLY with helping others cope and talk with other mothers who are currently going through treatments with their children.  It has been such a blessing to meet others who have dealt with the same things but in different ways (as bad as that sounds). I wish we had a different meeting story but it is what it is. stinks.  It has also been a good thing for Hunter because he has been able to meet other kids that have been through cancer.  I wish everyone had a good outcome.  Someday everyone will. But our motto in our family is.. Cancer suck but CanCer-vive! <3

Submitted by:: Cheryl

Here is a video we found back when Hunter was doing the paper plane drive.

And here is a link to the story.

http://www.wbko.com/news/headlines/16816161.html

God is Good all the Time! Logan’s Burkitt’s Battle.

 

 

For a month our 11 year old son, Logan complained of pain in his stomach.  He missed about 12 days of school, but never seemed to feel any better.  His doctors diagnosed him with constipation, which we treated, but he never felt any better.  Other doctor visits resulted in suggestions like, “eat a cheeseburger and get some sunshine.”

Logan insisted, however, something was wrong and he needed help. He found a hard mass in his side, and asked us to feel it, but we weren’t able to feel it, (because we didn’t want to push too hard on his belly).

Finally, a doctor who knew something was very wrong. The doctor ordered an MRI, which revealed intesisception (a telescoping of the intestines, which severely constricts flow), and sent us to the UK for what he considers to be the best in dealing with this kind of ailment.

Logan was admitted to UK Hospital for surgery on June 7, 2010.  Logan walked into Kentucky Children’s Hospital for what we thought would be an overnight stay to fix an intussusception with a fast easy enema. That is not what happen.

By the end of that first week in the hospital we knew something was very wrong with Logan. Logan was having a very tough time recovering from his initial surgery. He was still retaining fluids, had gained 17 pounds in water weight. His intestines were not yet functioning, and his pain was increasing and his mobility was decreasing. His heart rate and breathing kept crashing and setting off alarms, they could not get his fever or pain under control. Our sweet boy was very sick and we knew if something was not done soon my son might die. Early on a Friday morning I had just drifted off to sleep after a long sleepless and painful night for Logan when I was woken up  by Logan’s surgeon  and a whole gaggle of other medical staff and social workers invading Logan’s tiny hospital room with bad news.  Lab results had come back, and the mass removed was Burkitt’s Lymphoma.

Logan in one year endured 46 IV starts/pokes, 107 painful dressing changes of a massive wound, 15 surgeries, bone marrow biopsies, 48 nights in the hospital, 2 trips to the ER, too many doctors appointments  and x-rays to count, 2 blood transfusions, 2 types of central lines placed and removed, 14 times he had to sit while chemotherapy races into his sweet little body, 13 infusions, 23 scans, many shots and a  month of IV antibiotics given at home by mom and dad, countless days and night of extreme belly pain, a cancer survivor, a family that is forever changed and a deep understanding that God is good all the time.

Logan’s story goes on. He is a survivor. We will watch him grow and do great things.
http://www.caringbridge.org/visit/loganweileriv/journal

Submitted by:: Sarah Weiler

Brian Howell

 

My name is Hayley Howell and my husband, Brian Howell, was my best friend, my rock, my soul mate. We were a young and very happy couple. Little did we know we would know the words Burkitt’s Lymphoma very well, very soon. Brian was diagnosed with Burkitt’s February 10, 2010.

He underwent 4 rounds of Hyper CVAD and one round of RCHOP. Unfortunately, after a very long nine month battle, Brian passed away September 22, 2010.

Our nightmare all started back in December 2009. Brian always threw his back out once a year. And this time it was very different. After being miss diagnosed twice and being in the emergency room three times, he was finally diagnosed with Burkitt’s Lymphoma.

Treatment started right away after the final result of numerous tests were performed to make sure Burkitt’s was indeed the correct diagnosis. Brian lost over 130 pounds during his illness and fought a very courageous fight!

As his wife, I stood beside him being his caregiver, patient advocate and best friend. We were trying to start a family when Brian became ill. We were married a little under 3 years at the time of his passing and were together for four beautiful years.

Since Brian’s passing I have written about our beautiful love story in the published book Unwritten: A Love Story which is out on Amazon.com and is available on kindle and the iBooks. Brian knew that I was writing this love story, this testimony of the fight to make it through such a horrible disease. I think  he would be proud of the work I have done to bring awareness about Burkitt’s and telling our story.

To learn more about Brian’s courageous fight against Burkitt’s please visit Unwritten-A-Love-Story

“To the world you may be one person, but to one person you may be the world.”

Rev. Roger D. Knight, Sr.

 

 

My husband, Roger Knight, was diagnosed with Burkitt’s lymphoma at the end of April 2011.  He had been having some health problems for about 6 months.  His doctor had diagnosed him with GERD, sinuitis, etc.   I had noticed in December 2010 that his stomach looked strangely swollen at times.  He nor I knew what the problem was.   In April he noticed a strange mass under his right arm.  He went back to his doctor who immediately send him to a surgeon who immediately sent him for MRIs.  After the MRIs he was sent for a biopsy which confirmed a diagnosis of Burkitt’s.  We had never heard of Burkitt’s before this.

My husband was given an appointment with an oncologist.  Before he could meet with the oncologist, he had to have emergency surgery for blood clots in one of his legs.  This surgery landed my husband in the hospital.  We did not know it at the time but for the next nine months he would either be in the hospital or at rehab.

The oncologist told my husband he would live only 4 weeks unless chemo was started within days of his leg surgery.  The first round of chemo almost killed him.   He had to be put on a ventilator for a week.  He almost did not wake up from that.  He did survive the first round of chemo.  Also, he had lesions on both kidneys.  The chemo did clear those up.

After he recovered from the first chemo, he went to rehab and came home for one week.  The cancer started moving into his central nervious system, and he was readmitted to the hospital on July 4, 2011.  An Omaya was put into his head for the methotrexate to be given to him bathing his spinal fluid.   Also, he had a Hickman in his chest for chemo to his body.

He went through a lot mentally and physically.  He never walked again unassisted.  He could not balance after the cancer went into his central nervous system.

By December 2011 he had lost use of both arms and hands.  His right eye was swollen and had a glassy look to it.  He could not see out of it.His immune system was so compromised that he caught pneumonia at the end of December.

The neurosurgeons wanted to operate on his neck trying to help him regain use of his arms and hands.   My husband agreed to the surgery.  They waited a week or so due to the pneumonia.  He survived the surgery but could not get over the pneumonia.  His body was too weak.  The doctors had also put a feeding tube in his stomach and a trach in to help him breathe.

My husband fought and fought to get well, because he wanted to come home again.  His body finally could not fight all of it anymore, and he died on February 13, 2011.  Thankfully our children and I were there with him.

I asked his oncologist how he had caught this disease?  All he could tell me was in my husband’s case it was the Epstein-Barre virus.