Treatment Center:  Cancer Care Centers of South Texas

Oncologist:  Dr. David Friedman

Cheryl’s oncology treatment was delayed several months due to the struggles with MRSA. She’d begin to heal, her and her doctor would make plans to start chemo and the MRSA would return.  Allegedly, her cancer was fully removed and no signs were in any of the lymph nodes back in May when the biopsy results were completed.  His layman’s description of her treatment was it was best to tackle her cancer with an aggressive chemo treatment as she was young and could handle the treatment.

From DPD-Deficiency Photos

 

Her oncologist rushed her into chemo in December, 2007 after an ovarian cyst was found.  No biopsy could be performed on that cyst due to the risk of another MRSA flare up.

This was her moment. All she’d dreamt of through the other trials was the chance to start chemo and have a fair fight to beat the cancer. It’d finally came: 6 months, twice per month.

14 December, 2007:

Cheryl’s portacath was implanted.  Her doctor said he had some placing the tube because she was very dehydrated.  Otherwise, all was good.

18 December: Day 1

Her first chemo treatment. All went well apparently, nearly five hours at the treatment.  Her first evening side effects were sick stomach and mild dizziness. Drugs adminstered: Eloxatin, 160mg; Leucovorin, 376mg; 5-fu, 750mg, 5-fu (CI), 1130mg

19 December: Day 2

She met me at another appointment after her second infusion/chemo treatment. Her face had seriously turned beat red by now.  Drugs adminstered:  Leucovorin, 376mg; 5-fu, 750mg, 5-fu (CI), 1130mg.

Total drugs administered in 24 hours:  Leucovorin: 752mg, 5-fu: 3760mg

20 December: Day 3

Final visit of first treatment, flush. She now had the red face, pox looking red spots on her chest and back and her throat/mouth was extremely sore. She’d also complained of odd vision problems and nausea.

While her portacath was being flushed, she vomited.  Her oncologist looked her over, seemingly concerned but didn’t behave as if it were anything more  a case of the more extreme side effects.  He prescribed benadryl for aches and pains, prednisone for the swelling and something for the nausea. She was beat after we came home from this treatment. She slept all the way home and for three hours after we got home.

21 December: Day 4

The shots seemed to help and she was rested and ready to go this morning.  Unfortunately, the redness on her face and throat came back with a vengeance today so she’s going to start steroid pills for that. Other than having the chills, soreness in her throat when she breaths deeply is the only thing she’ll complain about.  The nurse called while she was napping, all the symptoms were passed on even though Cheryl played them down in her usual, tough Irish fashion.  Fear set in today, she seemed to be very worried over the seriousness of the side effects. I was afraid of another MRSA relapse.

22 December: Day 5

This is getting bad. Today, the diarrhea, nausea and sore throat really set in. She forced herself to do some final Christmas shopping. That lasted about thirty minutes.  It was more than she could handle. 

She became very quiet today. I became more afraid something was very seriously wrong beyond “side effects”.  Lethargic, scared and depressed is the best description of Cheryl today.  Again, she wasn’t one to complain. Her mouth was swelling so badly talking was a problem but she still managed a muffled laugh now and then.

23 December: Day 6

More of the same and getting worse as the day wears on.  Nothing is staying down.  Her throat is becoming visibly swollen.  Her face is getting a dry, onion peel look to it on top of the redness. There are now dark red pox looking spots on her chest and shoulders.

We called the oncologist’s on-call number, the doctor who called back prescribed a solution to numb her mouth and said if the nausea and diarrhea continued we should to take her to the hospital. She hit her emotional bottom on that note.

Later in the evening, I forced the call to go to the hospital. A very painful decision:  “If I have to go back to the hospital, they’ll kill me”.  As I packed her things for the trip, she stood in the bathroom doorway and had a resigned look that it was her last night at home.  It would be.  It was a long night and the beginning of a long nightmare.

24 December: Day 7. 

We finally got in to a room around 0430 after several hours of waiting, testing and IVs in the emergency room.  While we were waiting, I realized the back of both of my hands were starting to burn, itch, and turn very red.  This had started two days earlier.

Severe dehydration, nausea, diarrhea, and now oral mucositis. 

We were visited by a doctor from Cancer Care Center who said her reaction was one of those one-in-a-million deals.  Nothing firm, just vague possible causes. He was slightly concerned it may be related to the Bactrim she was still taking. 

She was up, around and being positive today. The doctor gave her hope of being discharged later in the week.  Sean visited after work.  When we went home for the evening, I looked back to the hospital. There she was, her silhouette in the darkened room watching us leave.  It hurt.

25 December: Day 8

She had a smile and a laugh for us when we arrived.  Her condition worsened overnight. Now, the mucositis is affecting her urinary tract.  Her face is peeling and cracking also.  She is unable to eat due to the sores now in her mouth and the sore throat which is obviously worse.   She napped most of the day after getting her medications.

We watched a couple of movies and sat quietly. I’d asked for a chaplain to visit but they never showed.

26 December: Day 9

Doctor Friedman finally visits.  She woke to worsening symptoms this morning and her cracking face now has small, open and painful sores. We waited anxiously throughout the day for Doctor Friedman, he stopped by early evening.  He explained DPD Deficiency to her. As far as I know, it was her first knowledge of the defect. I had been home earlier in the day to do some laundry and discovered it on the internet.  I was now preparing for the worst as I read the mortality from sever cases is 33 percent. Doctor Friedman explained its rarity and low risk, so low that insurance doesn’t normally cover pre testing.  He went on to say that he skipped the test due to the low risk and to avoid any financial hardship for us over the holidays. 

I do not know if she declined the test during one of his visits after weighing the risk versus cost. She’s dead and the test is $230. There are no words for how I feel about that. The damage was done, no magic flush for her system.  Wait and pray as we’d done throughout the MRSA.

She did finally agree to have a morphine machine installed to help with the pain.

27 December: Day 10

She seemed to rest well and only used the morphine a couple of times.  She managed to drink a cup of apple juice and some liquid medicine.  Good things those were and gave us hope.  The hospital physician visited this morning with the news that this condition runs about 21 days and we should see things clearing up.  I was alarmed by her use of 21 days as I’d read a case report of one patient dying on the 21st day.

The DPD Deficiency test blood work was drawn.  She managed a shower. I commented that she still had all her beautiful hair. Bad timing, as I was brushing out her hair after the shower, it began coming out in clumps.  Her rash appeared a bit better. If so, I’m glad I’d not seen her back a day or two sooner as it was covered in the dark spots.

For me more than anything else, she managed to walk around in the hallway for a few minutes and drink a bit more juice today.  She seemed to be realizing there wasn’t much of a chance for a good outcome by now.

The rash on my hands was following the rash on her face: open sores and cracking by now.  I showed this to Doctor Friedman and he assured me there was no connection to the 5-FU and my hands. I am not so sure.

Her pastor, David Trawick stopped by very soon after learning of her hospitalization while I was home doing laundry. She felt really good from his visit.

Doctor Friedman stopped by around 2200.  He stopped the Bactrim as he was concerned about it adding to the problem.  He had orders to restart it if any sign of infection came back. He also went over her test for the day and seemed to feel she may be turning the corner towards recovery.

Sean dropped me off for the night and visited for a couple of hours. The following picture was the last one we took. The twinkle in her eyes and laughter in her lungs was still there but badly dimmed and muted.

From DPD-Deficiency Photos

 

28 December: Day 11

She proudly held her own today.  Along with her other symptoms, bowel and urinary functions are becoming very painful as the mucositis has spread to other sensitive areas.  She had a mild fever and low blood pressure.  The morphine is letting her sleep a bit better. She wasn’t up with diarrhea ad nausea as often during the night. 

Doctor Friedman informed us her blood count is now low.  He ordered platelets. Her fever and blood pressure returned to normal. She never hit her stride today, tired and depressed the day left us.

29 December: Day 12

She rested horribly last night, up every hour or so. Her bowel and urinary pains are getting worse. Her hair is coming out much more of course.  I was surprised to have her wake up and sit in the chair for a couple of hours this morning.  How she fights and  finds strength is a lesson to us all. Face and throat swelling has receded some and having something to drink was hopefully good for her and not something to make me feel better.

Doctor Friedman is holding off on starting IV feeding as she’s still trying to get food down.  He told her she’s in the hospital until she goes home when we asked what to expect for her healing.  Looking back, I feel he knew as I suspected that would never happen.

She did manage to drink more Glucerna and take a walk today but her pain seems unbearable. She’s really having to fight now.

30 December: Day 13

This day seems to have marked the start of the ending. She rested poorly again. Managing to control her bodily functions is getting very difficult for both of us. She really took a lot of the morphine today.

I never noted it but I think this the day she was put on IV feeding. Much more pain and difficulty in everything. 

She also seemed to show the first signs of some sort of mental issue. She seemed to be less coherent of her surroundings at times.

Doctor Friedman was leaned over her while checking her out.  She began to weakly hit his chest with her fists. He commented it was a sign she had lots of fight left. I thought then and believe still it was final act of rage at all that happened to her.

She managed to tell a visiting friend that she wanted her mother here with her.  That also was a sign she knew it wasn’t going to end well.

31 December: Day 14

Her decline was on in earnest now. She was losing control of her functions very often and what I thought was the morphine (which Doctor Friedman stopped on the 30th) was surely some type of mental issue showing up. 

She was mostly semiconscious throughout the day. Her blood pressure began bottoming out.  The nurses had added a pump to help clear her throat which we were using almost constantly now. The fluid coming out was very dark and a couple of times, I suspected blood.  Her balance was gone and going to the restroom was a chore for all. 

Sometime in the afternoon, she sat on the side of the bed, placed her head against my chest and slowly rocked us back and forth.  Moments later as I rubbed her shoulders, she managed her last bit of strength to stand with her toes on my boots and dance. Our last dance.  I now knew she was preparing to die.

I do not know why but I asked the nurses if they could bathe her.  The two nurses were so gentle and kind in taking care of her as had been everyone on the nursing staff. I felt this stay had been a hospice situation for them.

I sat with Sean and tried to prepare him for what we knew was coming.  Cheryl’s mother and my brother arrived in the evening.  When I took her mother to the room, Cheryl  mustered all she had to show strength and give one of her last smiles. I left her mother to stay the night and went home.

January 1: Day 14

 It was a day of visiting with her mom and waiting.  Nothing was good news from the doctors now. She kept getting worse and less conscious throughout the day.  Her blood sugar, heart rate, pulse and everything else were showing bad results.  Cheryl was quietly moved into the ICU ward before we went home that evening.

2 January: Day 15

Doctor Friedman called and woke me early.  Cheryl had taken a turn for the worse overnight.  Her organs and heart were now failing.  With all the blood in the pumps they were using, it appeared the 5-fu had severely ulcerated her intestinal tract. Her blood pressure could not be kept up in a safe margin.  Her heart was working overtime to keep up. Her friends and pastor made their visits.

3 January: Day 16

Her mother and I sat beside her throughout the night.  The sound of the respirator was comforting as I sat nearby.  As long as that was going, it meant she was still with me.  That was all the comfort I could find. 

I decided to speak with the doctor about removing the life support after her sister and step mother had arrived to be by her side. He told me not to give up hope.  I asked what hope was left and he replied he’d have to check his numbers. That is the last time I ever saw Doctor Friedman as Cheryl’s doctor.

Around 1100, her cardiologist met me and asked that I not consider resuscitation if her heart failed.  I told him our decision and he agreed but added she’d not likely make it into the evening.

My son and her mother decided to leave for some rest.  My brother and I sat in the room with Cheryl. When I saw Cheryl for the first time in 1983, I had a rush of something pass through my chest. I have never been able to explain that. At around 1350, I felt it again for the first time in nearly 25 years. My wife, Sean’s mother, our rock and best friend was gone.  A rare tear from her ran down her cheek as she let go.

The devastation from the 5-FU left us unable to have an open casket memorial. Throughout her colon surgery, MRSA fight and ultimately to this unfortunate end, there was no dignity allowed by the circumstances and consequences of her doctor’s choices.

10 January: 

The rash on my hands which had been following a pattern of the rash on Cheryl’s face was completely healed.  I can only believe that my contact with her skin and the 5-fu being excreted from her pores was the cause of my rash. 

I met a final time with Dr. Friedman.  I’m not even sure why I spoke with him, the shock of everything was still so strong. I was attempting to get her medical records which the records manager refused as I had no HIPAA release form, etc. He was very nice to offer to validate my parking however.

17 January:

Doctor Friedman finally received the test results for DPD Deficiency.  It was confirmed.

The oncology and ICU nursing staff at Methodist hospital deserve more thanks than I feel they will ever receive. Their care and comforting of my wife will never be forgotten.