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