My Burkitts Journey

 

My name is Jeff Runyan and here is a true story of my experience with Burkitt’s lymphoma, the most aggressive human tumor.

 

On 5December 30th 2008, I was at work and suddenly felt something strange in my groin area, but didn’t stop to look, because the end of the day was near. When I got home that night I had a look see and had noticed that one of my testes had swollen to twice the size of normal.  The very first thing that crossed my mind was my god I have cancer, having heard of Lance Armstrong’s battle with testicular cancer I was in a panic. I got on the internet and confirmed my belief and I went straight to the doctor at now care at our local mall. The PA at now care gave me an examination and sent me straight to the ER at St. Patrick’s Hospital, although panic had set in I was remaining calm, because she had told me that it may be an infection or a testicular torsion. After I arrived at the ER they decided to give me an Ultrasound and after it was reviewed the doctor told me it was not cancer, or a torsion and said it must be an infection and he proceeded to give me a prescription for Cipro and told me to follow up with an urologist.  I was so glad it wasn’t cancer.

The next morning I was on the phone and to my surprise I got an appointment and went in to see the urologist. He had a look and told me that it was probably an infection and told me to make another appointment for mid February a whole month and a half away. He made this decision without looking at the ultrasound, taking any blood work or even a urinalysis. I asked if he was happy with that decision and he said yes. I couldn’t troubleshoot that poorly at work and expect to get paid and I was very mad at the lack of interest as I stormed out.

The day after this I called around looking for another Urologist. The only referral I could get was to  see Dr. xxxxxx2 at the same clinic that I had just stormed out of. When I called they practically insisted that I see Dr. xxxx1, because he was my assigned doctor. They also said I couldn’t get in for two weeks.  I insisted on seeing Dr. xxxxxx2 and I wasn’t going to wait a week. (Living in a small town has disadvantages).  While I was waiting I continued to work and to take the Cipro, and despite the swelling which had continued to increase I needed a pay check.

When the day of the appointment finally arrived I took my wife with me so that she could witness and help guide me with the Doctor.  We went to the appointment and saw the Doctor, he looked at the testicle and told me that he thought it might be Orchitis, I asked about an aspiration (Biopsy) and he said that he didn’t think that was a very good Idea, because it could cause an infection given the area of the swelling.  He did give me a urinalysis test and changed my prescription to levaquin and also told me to take ibuprofen for the swelling and to get some support for myself as in a Jock strap and he sent me on my way.

We went and filled the prescription and bought a large bottle of ibuprofen and the strap.  When I took the antibiotic I felt my nerves in my back and arms tingle. I guess not just tingle, but the same feeling you get when your leg had fallen a sleep and  was recovering about mid way to when it’s normal again.  This only lasted a few minutes and I thought this was not right and I felt that I may be having an allergic reaction to the antibiotic, because it was in the side effects list.  But I had to go back to work and just kept it in mind.  Later that day I tried the ibuprofen and an hour or so after I took it my stomach began to feel like it was on fire.  I have always had a problem with anti inflammatory drugs, but thought if it would help the swelling,  I would give it a try.

The next day when I woke up to go to work to my astonishment my right testicle had swollen up so now both are swollen, so  I got on the phone and called Doctor xxxxxx2 and of course you can’t ever talk to a doctor on the phone, but I insisted that he call me.  When he did call me I told him that now both my testicles have swollen and asked if that was normal after being on antibiotics, he said it was not normal for it to spread while on antibiotics, but to keep taking the antibiotics and to call and set up another appointment in about three weeks.  That evening I took another Levaquin and felt the same sensation and now I was getting very worried, so I made another trip to the ER. When I was booked into the ER they gave me another ultrasound and again they said I didn’t have cancer, but despite my complaints about the antibiotics they gave me a mass dose of it in an IV in hopes of killing off the infection, but when they gave it to me I had the same feeling as before and now it was starting to spread and I had severe stomach pain too, which I thought was related to the ibuprofen.  After all this I was sent home.

A couple days past and nothing got better.  I was getting worse and was now having blood sugar issues, severe stomach pain and losing weight.  So again I went to see another Doctor, who took me off the levaquin and gave me a different antibiotic, but this time injected it. They also gave me what they called a GI cocktail for my stomach and  guess what? None of this helped and I was sent along my way again.

(By this time I have lost track of time, days are merging, the pain is horrible and I can’t sleep, no bed rest, but I continued to go to work instead.)

After another day or two,  I was still getting worse, my testicles looked and felt as if they would burst.  I had stopped the ibuprofen and my stomach was getting worse. Again I went to the ER, but this time they just gave me the GI cocktail for my stomach and sent me home and someone told me to take the levaquin.  The weekend came and I thought that maybe if I rested, that just maybe the swelling would start to go away, but it never did.  On Monday I called and scheduled an appointment with another Doctor. I think I went and saw him on Thursday, but as I said time is a blurred and days have merged and I still have the same issues and I am still dragging myself to work.  When it was time for the doctor visit I again took my wife April with me to witness what the doctor said and did.

When we finally got into see the doctor after waiting over an hour in the waiting room  I explained to Doctor Dr. Xx3 what was going on, and what my concerns were about the levaquin which I was now back on.  I told him I had a pain in my back and he touched where I pointed.  I said yes that’s the spot, and he punched in that area, not hard, but not lightly either as some sort of a joke.  I asked him about the groin and about the aspiration and he too advised against it, but joked and said “you should take a picture of those testicles and send them out in Christmas cards to your buddies next year”, and to keep taking the levaquin.  I was in shock, I was appalled, but by this time I was getting so weak and so frustrated that I just left to go home with my wife as we pondered what just happened and what to do next. The weekend came again and on Saturday I called every pharmacist in town and asked about the levaquin and each one told me to stop taking it.  Within the next day or two, after work, I was in so much pain and telling everyone that would listen about it. I was determined to get help.  Instead of going home after work I went to now care at the mall again where I had originally went.

We are now close to the end of January and I am at my wits end.  When I got to the counter the gal said we are not taking anymore patients. I told her that if they did not see me and if I died they would hear from my wife.  The receptionist went back and got the doctor who came out and recognized me from a previous visit that I had made a few days before at another clinic (the doctors rotate between clinics in this town).  He said come on back. I sat down and explained to him the events of the past month, how things were getting worse and not better and when I was done telling him I demanded a chest x-ray which he agreed to do. I just wanted to see what was wrong with my back. By now my arms and hands were tingling and going numb and my back was so painful I could barely handle it.  When he came back from reviewing the film after the X-ray was done he said “there is something horribly wrong”.  He wasn’t sure what it was, but it appeared that I had a grapefruit size tumor behind my breast bone and he wanted me to have a CT scan the next day (Go figure).  This was the first week of February of 2009, more than a month since my first visit to the ER, where I was told I did not have cancer.

So, I am still not sure what is wrong, because the Doctors had taken a toll on me and convinced me that I had an infection and not cancer, but in the back of my mind I was tossing things back and forth in a struggle to decipher all that had taken place.  This wasn’t cancer, because time and time again I was told it was not.  Maybe it was a side effect from the antibiotics or maybe just some horrible infection, or some other disease that I picked up in the military from some country I had worked at in the past.  I wasn’t sure anymore, I felt as if I had been pushed up against a wall by the medical establishment or was a victim of some chain of unfortunate events that had taken place.  I was still pondering these things as I laid there getting my CT scan.  Despite all that had transpired the past month and that day I still went to work the following day. My mind and body just had to stay active and I was not in the right state of mind from pain.

One of the doctors I had been seeing worked at the mill one day a week and was there that day after the scan.  After I did my morning routine and came back to the shop area I was given a message that the Doctor was looking for me.  I went down to see the doctor and as soon as I saw him he said “I don’t want to take away from Dr. Xx3″s thunder (Dr. Xx3 was my primary physician), but you have Lymphoma.  I said lymphoma, how do you know that?  He said, “that was from the CT scan results, they believe you have Lymphoma”.  I turned around and left in shock. I was already emotionally distraught now; I have been through a month of a living nightmare trying to find out what was wrong and now I was just told at work that I had Lymphoma, the same disease that had killed my brother a few years before. I had originally told them that the very first time I went to the ER that my brother had just recently died of lymphoma and this Hospital was the same place that had told me I didn’t have cancer “TWICE”. I wasn’t sure what to do.  I went to my Foreman’s office and told him I had Lymphoma and that I was leaving.  I didn’t even lock my locker I just grabbed my jacket and hat and left.

As I was driving home I called my wife and told her what had transpired.  I told her that I was on my way home and that I needed to go to the hospital and that I couldn’t believe that I was told I had Lymphoma at work.  April had just started a new job and couldn’t leave so I went alone.  I went straight to Dr. xX3’s office without an appointment and demanded that he see me.  By now I have lost 20 pounds, my back was painful and I was starting to feel that I would fall over dead at any moment.  When I saw Dr. xX3’s he told me that he wasn’t completely sure that I had Lymphoma, because I was a complicated case and that he wanted me to go see another doctor that was a specialist.  So, I went and met up with the other doctor whom I had never met before.  He said that I had a grapefruit size tumor on my thymus gland and some lesions in my lungs, but  that didn’t concern him.  These lesions were small, and there was some fluid in the lining on the lung too.  He said there were signs of some very small lesions on some other organs that didn’t concern him too.  He just wanted me to have a Biopsy of the mass behind my chest and that the Surgeon was available to do the procedure the next day.

I went down to see the Surgeon and he told me what they would do.  They would slice open my neck and run a tube down behind my breast bone, take some samples and send them to the lab.  The following day April still could not leave her job, she was still on her probation period and the only person I had available to go with me was my 16 year old son.  We left early and I drove down to the hospital.  They put me under and performed the Biopsy.  When I woke up they were looking at me and told me you gave us quite a scare, you had stopped breathing during the operation.  I asked if it was lymphoma and was told that we would have to wait for the lab results.  I didn’t know at that time that they had already told my son that I had lymphoma.  I went home and waited for the results.

A few days went by and I hadn’t heard anything; but I had finally stopped going to work. The pain in my body had spread to my legs, arms, hands and just about everywhere.  I couldn’t sleep and could barely eat. I have yet to see an oncologist, because they were waiting for the results of my biopsy. After several days I finally called them and I was told that the samples had to be sent out to Mayo clinic, because the local pathology lab wanted to be sure what exactly it was that I had and they needed clarification.  I asked how long we were looking at and she said  2-3 weeks.  My god I just couldn’t believe it, I told them I didn’t have that long and I couldn’t wait.  The nurse told me she would call everyday, but I had no choice, but to wait.

I got so sick around the 5th of February and had my wife take me to the ER again.  They started me on morphine and finally told me to stop taking the antibiotics.  They took blood, urine and started an IV.  They decided to give me another scan and when they came back from reviewing  the scan, the young doctor (that looked to be in his early twenties) told me that they couldn’t believe what they saw.  The small lesions from just a few days before had turned into massive tumors, my colon was blocked, my kidney, my chest, my right lung, my abdomen were infested with massive tumors and the lining of my lung was filled with a lot of fluid. My tumor in my chest was now pressing against my spine and they found a football size tumor in my stomach and small lesions were showing in all other organs. As the young doctor explained he started to cry, he said I went to medical school for many years, but there is just nothing I can do for you.
I winced in pain and told him not to feel bad; “you just can’t fix everything,” a line that my dying brother had told me once when he was so sick, I was now using myself.  I asked what he thought my outlook was and then just asked if he thought I could make it home. He said I don’t know if you can make it to your car, but he did have a plan that he said may keep me going.  He prescribed Morphine and massive amounts of steroids and told me that he would refer me to the Cancer Center.  I was scheduled to see them the following Wednesday a whole 6 days or so away.  I finally realized I was dying, I didn’t know if I would live long enough to make it to the cancer center and we still did not have the pathology report.  I called my family to come join me in my last days.

I put my will together and had my wife gather some friends to come over to witness it. I didn’t want to come out of the bedroom when they arrived, because I know I looked really sick and was embarrassed by it.  I explained to them that I had cancer, that the law required that they read my will before they witnessed it and I didn’t know if I was going to die or not, but just wanted to make sure I had the will.  I didn’t say much after that, I just wanted to get rid of the pain I was having, everything was swollen, my stomach stuck out and I couldn’t walk well at all.  The only relief I would have was soaking in hot water. Soaking  soothed me somehow and I spent the better part of the weekend in the tub.

My family arrived and had to deal with my agony. I was in so much pain that I could not sit for long, but would pace back and forth like my dog did before he died several years before. But  somehow I made it through the weekend and finally got to the day of the appointment to see my Oncologist.

My Oncologist wanted lab work and to schedule a PET scan.  PET scan  was the first of some new terminology that I would later become very familiar with, but of course  the machine wasn’t readily available. It was a mobile unit and wasn’t in town.  I told him, “please can’t you do something? I am falling off the edge of the world.”  He looked flustered, but jumped up and went out of the room and called somebody, after he returned he said “the best we can do is get it in a couple of days,” he added “it looked like I had diffused large B-Cell Lymphoma.” He wanted to see me right after the PET scan.  My Oncologist also said, whoever put you on those steroids knew what they were doing. It was enough to keep me alive.  Now I have a name to put on the tumors which are estimated to be about 20 pounds worth, but we still had to wait on the pathology report from Mayo clinic.

Since the PET scan wasn’t available for a couple days I went home to sweat it out and to my surprise I made it. I actually made it alive to the PET scan appointment. It was similar to the CT scan, but they had me drink glucose syrup and injected me with a radioactive material.  I had to wait for an hour then they performed the scan that took about 30 minutes.  It didn’t take long for my Oncologist to have the results and my wife and I went to see him.

My Oncologist said the PET scan lit up like a Christmas tree, that I had cancer every where.  He wanted a bone marrow biopsy right away.  I will never forget that procedure; they take a long heavy gauge needle and press it into the hip bone.  You are not given anything, but a little Novocain, so you just grin and bare it.  He had to press extremely hard and said “you have very strong bones,” as he tried to force the needle through my hip bone. I was very relieved once it popped through and could feel the suction as he sucked the sample out. (That was one of the strangest things I have ever felt).  He then said “we need a piece of your bone” and knocked a piece off and sucked it out.  He was concerned that I wouldn’t survive much longer; he said, “we can’t wait on the Mayo Clinic any more; we had to do something right away.” I remember the last question I had for him that day, what about my testicles? He said, “I am going to fix those”. I originally wrote a list that I got off the internet of about 20 things to ask him, but I didn’t ask but the one question.  Finally, after a month and a half I was to have chemo, but first I had to have a port installed which I had done right away.  This whole time period was a blur then and is still a bit blurry and I have to refer to my notes to get this story right; the next day I went in and had my first round of RCHOP.  I was so ready for anything at this point, after they accessed my port I could feel the chemo moving through my veins and to my surprise, when they got to the Rituxin and it started pumping through I could see the tumors melting away and I could feel the inside of my chest collapse.  This caused me to collapse with it and I couldn’t finish the bag, so I had to return the next day.  But when I got home I was so relieved that finally the swelling in my groin area had melted away, this was a miracle.  But we still didn’t know what type of Lymphoma I had; I was just relieved that some of the pain had diminished and was sent home to rest.  The next day I went in and finished off the Rituxin and the other chemicals in my round of RCHOP and was sent home, but this was just the beginning.IMG00035-20100201-2055

Two days after receiving the RCHOP chemotherapy round my Oncologist had me come into his office and told me that they received the answer from Mayo Clinic.  He told me that I had Burkitt’s lymphoma and that is why the tumors spread so fast, because the cells double in 24 hours or less and RCHOP was not enough to stop the cancer.  He said as soon as we can we need to give you a different kind of a treatment protocol and we have to be very aggressive about it, he handed me a copy of the protocol he would use, CODOX-M-IVAC-R (Magrath protocol) we can’t have any delays he said and you will have to have the highest doses that I can administer to you and as quickly as I can administer it.  He wanted me to have a heart study done to see how much my heart could handle.  He told me that it would not be anything like the RCHOP and the main goal was to kill every fast growing cell in my body, then recover enough to do it again and again and again and that is how you take on Burkitt’s. My Oncologist is a very direct man! He’s a PHD and after looking at his resume that I had found on line, I realized why they waited for me to see this man.  He was the right guy for the job.  He wanted me to come to the Cancer Center everyday for blood work, so he could see what was happening with my blood on a daily basis.  He told me that you will not have an immune system for most of this time period and hospital stays would be a must, but he wanted me to stay home as much as possible too, because “hospitals are no place for a sick person.” he said. I was floored, I never heard of this cancer and I knew nothing about it, but I had only two questions for my Oncologist this time, what were my chances of beating this? He looked at me and bluntly said, “50/50′. I also asked how long have I had this cancer and he told me about 30 days before the first symptom. So much for the 20 questions.

While my brother and mother were in town, my brother installed a door on the basement; April sanitized the entire basement, set up a bed and TV for me down there and bought air purifiers.  We were getting ready for a long run of dodging infections and a restful place for me.  I had a few days before I would recover enough from the RCHOP round and we were preparing for the battle.  My brother bought groceries an my dad stayed after my brother and mother left to shuffle me back and forth to the hospital while April tried to maintain her job and my kids went about their daily routines.

As I reflect back I don’t know why we did all these things, because there is no book to explain what a family should do to prepare for a battle with Burkitt’s.  I for some reason thought this would all be over in a few weeks one way or the other.  At the time I just didn’t know what was to come, I searched for answers on the internet, but only found information that was hard to find and confusing.  I was confused, because the steroids had taken me places in my mind I had never ventured before.  My emotions were now a roller coaster.  I wanted to get back to work so I could continue to provide for my family, but that would not come so easy.

Now the treatment process begins.  Bone marrow biopsies, eight chemotherapy Intrathecal Injections, 350 plus bags of antibiotic’s, fluid’s, nutrients and chemo, 8 blood transfusions, many platelet transfusions, more prescriptions than I can remember. I was treated with 4 rounds of the Magrath (CODOX-MIVAC-R) Protocol and spent about 70 days in a hospital bed off and on and I lost nearly 55 pounds. Following this I was treated with 17 rounds of radiation, which wasn’t as easy as it sounds or I was told it would be. I have had many side effects from these treatments, including getting neuropathy so bad I couldn’t feel anything from the knees or elbows down, but some of this may have resulted from the cancer pressing against my spine. 2-150x150

Somehow I survived all of this.

 

Fighting Back

In March 2010, I was asked if I wanted to participate in a challenge, to swim a mile as one leg of a triathlon. So, I trained and I worked hard with Physical therapy and after all was said and done, I swam the mile, numb hands and legs and all, I was dead last and ran out of time, so the time keeper was yelling for me to get out of the pool, I thought I might drown, but the cheers of my friends and family yelling for me to keep going drowned him out and I made it and I never touched the bottom, but this was one good day out of many bad days.

Burkitt's lymphoma

IMG00068-20100522-0901 After 4th round

 Choosing Action Cancer meets its match.

November 2011. After every scan came back clear for two years my scan on Nov. 2nd 2011 came back positive. There was an area around my only tonsil that lit up the PET scan and was growing. My ONC referred me to an ENT and he suggested surgery. He said that is the only good way to biopsy that part of your mouth. So I had surgery and they cut a pretty good portion of my mouth and throat out, including the tonsil. They tested the tissue and it wasn’t cancer. The thing about PET scans is they can detect Burkitt’s really well, but at the same time any areas that are producing energy or showing any Hyper-metabolic activity can show positive on a PET scan since PET scans measure Metabolism. Hyper-metabolic just means those cells are metabolizing more sugar then normally. Burkitt’s cells have a much higher metabolic rate than healthy cells. That is why a PET scan is really good at finding Burkitt’s. Places in the body that might be fighting an infection also can have a high metabolic rate as well as areas with disease, basically any inflammation can show increased up take. The way I understand up take is the amount of absorption of the Radioactive glucose they gave you an hour before the scan. Burkitt’s cells have a very, very high up take. I’m not a radiologist or even in the medical field; this is just what I think I know from going through about a dozen scans after getting sick from Burkitt’s. See how much I have learned in two years?

Some Oncologists say that follow up scans are a waste of time and money, because you can come down with Burkitt’s between scans, some don’t share this view. But I do know someone that had a routine scan that came back positive after being in remission for more than two years. It turned out to be Burkitt’s and they were treated with a Stem Cell Transplant and are doing fine today. Had they not had the routine scan this may of had a different outcome. In my case the tissue was not cancer this time, but what if it was in some stage of morphing into something serious? I think if there is a chance of catching a Burkitt’s lymphoma relapse early on it is a good thing to get one done if you are having symptoms. As I learned from my friend, time is limited when your only option is a transplant.

The Burkitts Lymphoma Society

The Burkitts Lymphoma Society started while I was in the hospital.  I couldn’t find people that had the same disease as I had. I only had use of my index fingers at the time, because of neuropathy.  I started typing and made an on line chat and called it the Burkitt’s Lymphoma Society. Here is a short story of how it came about that our local paper did. I can’t take any of the credit for myself.  This wouldn’t be here if people were not willing to share.

Click the link to go to the story.

How the Burkitt’s Lymphoma Society came about.

The last scan

On Nov. 30th 2012,  I was told by my Oncologist that my latest PET scan was clear and there would be no need to come back unless I thought I was having a relapse. He said that the possibility of relapse at this point was very remote. After the appointment it took me awhile to digest this.  About 4 hours later it finally sunk in, after 3 years and 4 months to the day, I graduated from the cancer center.

Aug. 23, 2013.

I am moving on from cancer.

I can tell you it is emotionally devastating to have cancer, and then the side effects and then to find out you are financially ruined and have to start completely over from scratch at the age of 51. We did manage to save the house and my old truck with over 200K miles on it. We sold the new car  and bought a old used car. It takes a lot to muster enough strength to do the paperwork and ground work that everyone requires of a cancer survivor, thank goodness my wife was able to take care of most of this.

I  was just able to start working again after several failed attempts. When I first finished chemotherapy with my ex-employer, it was disastrous trying to work when I should have been home recovering. I had no choice, but to try and work as I was cut off financially and broke. And another failed attempt in 2011 from the PET scans Surgery, infections and other medical issues. I had to start my own business, because I couldn’t get anyone to look at hiring me for work I might be able to do with my limitations. Even then it has been harder than I ever imagined. My feet are deformed, mainly my right foot, my back and legs still have severe pain, but epidural injections seem to be helping that, (thank goodness), and my hands and legs are still numb and tingle, cramp, twitch and hurt. I can’t take a step without pain and that is only the half of it. The radiation treatments seem to have left me with some unique issues where I have to plan my travel around restrooms and need shots every two week. To top this off I have this constant ringing in my head. But despite how bad that all sounds it is better than before.

I got sick at 46, it has been nearly 5 years and one rough road with lots of ups and downs and stress. The one thing that has helped me the most is the Burkitt’s Lymphoma Society Support group on Facebook and all the people I have met there. It has been so therapeutic and so uniquely helpful to my well being that I will never be able to explain just how it has affected me and made me want to keep pushing forward.

In closing I want to leave you with these few words.

Hope for the best and prepare for the worse, but when the worse comes keep faith in yourself. When it looks real bad, dig your heals in and push forward, it is all anyone can do.