Maintenance? I Don’t Think So.

It has been more than one month since my last post – more time than I intended, but the delay was caused by the so-called “maintenance” chemo I was put on starting January 5. After I finished over 12 rounds of my infusion chemo, Dr. P discussed my options with me on future treatment. My body needed a break, and then the plan was to start me on just one chemo drug, taken in pill form over 14 days, with a week off. Dr. P called it “maintenance” chemo, and stated I would remain on it unless and until my cancer starting growing, in which case I would go back to the infusion chemo of two different drugs. This sounded great to me. I envisioned having my life back; not being tied to a pump for three days every other week; not being as sick as I was with the infusion chemo; living my life the whole time. Although I anticipated some nausea because Xloda, the pills I would be taking, was a pill form of the infusion chemo that caused most of my nausea, I assumed it would be less because I would be on one drug, not two, and the pills would be spread over 14 days, rather than three intense days of the drugs. I envisioned being able to travel, without being tied to my one week off, going to work whenever I needed, and perhaps towards the end of the 14 days dealing with some nausea. Boy, was I wrong!!!

Maintenance chemo turned into a nightmare for me. For 12 days I was doing okay. While three afternoons the second week were tough because of nausea, I was functioning, eating, working, seeing friends, and just spent those three afternoons hunkered down on my couch. Then day 13 hit and I hit a wall. The night before, I had been to dinner with Rena, Mark and my husband at Assaggi, one of our favorite restaurants. While I had some underlying uneasiness, I had a good dinner and generally was fine. When I woke up Saturday, that was not the case. I woke up and proceeded to be sick the entire day, while trying to review compensation materials for the compensation meetings to occur Monday and Tuesday about the litigators in our firm. That day I could barely work, and spent the day either getting sick or dozing to try to escape the misery. Sunday was a new challenge. I woke up to a mouth so sore I could barely open it and a throat that felt like strep throat. I could not swallow. I tried to use a straw to drink smoothies, which my friend Hillary delivered to me. I also started what became uncontrollable diarrhea. Despite this, I spent the day reviewing the compensation materials and the next day, as awful as I felt, I spent the whole day in a phone conference while we discussed compensation. I think only adrenaline kept me going.

Tuesday morning I e-mailed Lynette, Dr. P’s nurse practitioner, who told me to come into the clinic for hydration. I spent four hours there, and left feeling a bit better. But I was still battling nausea, vomiting and diarrhea. Wednesday hit a new low – the top membrane of my lips literally peeled off, revealing red blistered lips in its place. My mouth and throat were still horrid and the other horrid side effects continued despite massive doses of immodium. Thursday and Friday I was back at the clinic for hydration but when I left for home Friday I was sicker than when I got there. By that evening when I e-mailed Dr. P he said I had to be hospitalized and I arranged to go in the next morning. I was shivering uncontrollably, was apparently severely dehydrated and the symptoms would not stop. By the time we got to the hospital, I was deathly ill, could barely keep my eyes open, could not stop shivering, and spent most of my time in the bathroom. Luckily I had a private room with my own fridge and freezer and quick access to the bathroom.

I entered the hospital on the Saturday after I hit the wall, thinking I would be there 2-3 days and then go home. Again, I was wrong. I did not get discharged until my 12th day there. In the meantime, I had no appetite for 6 days, they could not get my symptoms under control, and they kept adding anti-diarrheal medications. I started with prescription strength immodium and lomotil, they then added an injection that literally felt like fire was being injected into my arm. When that did not stop it, they added tincture of opium, which is not absorbed, but goes straight to the digestive system. When that did not help, Dr. P called in GI doctors, who recommended a powder drug that is given to gall bladder patients facing this issue. Finally after a few days on all 5 drugs things started to improve. I also had to take numerous other drugs including liquid potassium that I could only describe this way – take a dead fish, put it in the sun for ten days, then squeeze out the fish oil and give it to me to drink.

When I first got to the hospital I was in a very dark place. I thought of Anne Frank and how she died from diarrhea caused by typhus. I cried easily, more out of frustration and exhaustion than anything else. After about 5 days when my appetite returned, I felt much better and that darkness was gone. My husband said he knew I was doing better when I sent him a picture of the dog food (that’s what it looked like) that the cafeteria delivered as my lunch and told him this was very scary looking and purported to be lunch. I did not eat it, but ordered a grilled cheese. I also sent him a grocery list of food to buy me.

The care at Karmanos was amazing – I have never experienced such good care and such caring nurses, nurse assistants, volunteers and staff. I loved all my nurses and when I left, they came in to say goodbye and ask me to visit, not as a patient but just to say hello. I cannot speak more highly of the care. The doctors were also wonderful and came to see me many times during each day. On the other hand, the food, which is supplied by Harper Hospital to Karmanos, was disgusting. Not only was it horrid looking, it was not tasty, it was not healthy in any way, shape or form and frankly, I would not have eaten but for my family and friends who brought me good food. I ate the outside food they brought in and simply avoided anything from the cafeteria. The food was such that if you wanted to make a joke about the worst cafeteria food you could buy, you would use this food as the example. Whole Foods, which was next door to Karmanos, was a life saver, as were my friends, Judy, Cyndi, Marla, Laura, Kim, Danielle and Lynn, who all brought me food and drinks as well. When I got low on food I would panic with the thought that I may have to eat from the cafeteria but Alan came through. He shopped at Whole Foods more than once for me. When I told him I had a craving for lemon rice soup, he brought it that very day.

When I came home, finally, after 12 days, I was thrilled. As Alan put it in the e-mail he sent out to tell folks – I made bond and had been sprung from my hospital room. I am still physically weak, and can get dizzy if I stand up too quickly. I am gaining back some of the weight I lost, however, and today I went to a gentle yoga class and it felt great. My spirit and energy are strong and my body will soon follow. Already, after only a few days at home, I feel a big difference. I will go to yoga tomorrow, I will walk a bit more, and I plan to just keep getting stronger. In the meantime, I know that the “maintenance” chemo also attacked my cancer cells just as it did my fast growing digestive system cells. I believe the next scan will confirm that. So there is a silver lining to all this. On Wednesday, I see Dr. P to discuss my new protocol. He told me that the reaction I had to Xloda put me in the .01% category – that I was an outlier. That is okay – because I will be an outlier when I survive this cancer long term. I am back, I am in a good place, and I am ready to continue the fight.


4 thoughts on “Maintenance? I Don’t Think So.

  1. Therese says:

    My God, Marilyn. Your strength and determination are phenomenal. I’m awed by your stamina and faith. If anyone is an outlier, it is you!

  2. Susan Steinberg says:

    I Am so sorry you had to endure all of that. I admire your incredible attitude and your spirit through this challenging journey. You are always in our thoughts.

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