Chemotherapy Rounds #2-4: July-September 2011

Chemotherapy Rounds #2-4
Round #2: Wednesday, 27th July 2011 - Tuesday, 16th August 2011
Round #3: Wednesday, 17th August 2011 - Tuesday, 6th September 2011
Round #4: Wednesday, 7th September 2011 - Tuesday, 27th September 2011

Because of the great news that my cancer is HER2+ positive, I am switched to the UGIGAVCFT protocol. Only one of the drugs is the same as the first round, Cisplatin. Each round of chemo now starts with the cup full of anti-nausea meds, followed by a bag of saline, then the only drug that remains the same from last round, the Cisplatin. Next I get the Herceptin, which is the targeted drug for HER2+ cancer, which replaces the Epirubicin. Lastly I am hooked up to the baby bottle full of Fluorcil, which replaces the Capecitabine pills. Instead of 3 weeks worth of pills, I have an infusor (aka a plastic baby bottle of chemo) hooked up to my port for 5 days.

Chemo starts to become routine, my life running on a 3 week cycle. The first Wednesday, kinda day 0 as it's the day before the actual chemo is administered, I have to go to the hospital twice: once first thing in the morning to get my blood drawn, and later in the afternoon after the blood work results are back to see Dr. Katakkar for an exam. This is when he also verifies that my blood work numbers are good enough for chemo the next day (I'm not too immunocompromised or anything) and works out the dosages.

On day 1, Thursday, I go into the hospital for chemo usually first thing in the morning between 8AM-9AM and am usually done early afternoon (1:30PM or so). I leave Thursday with the infusor/baby bottle for 5 days. Usually I feel OK right after chemo, but lose strength & feel worse & worse until the bottle comes off.

The following Tuesday I go in to get the baby bottle removed. This is always a great relief, and usually my weakest point. Lots of times by the time I get home Tuesday I am exhausted by standing to take a shower. But that first shower after getting the baby bottle off is always wonderful even though it's exhausting - after five days not really able to do much other than a sponge bath because of the bottle.

Usually the rest of the week I feel pretty sick & crappy, it takes until the weekend to really start feeling like myself. The days between getting the bottle off and the weekend are usually the roughest mentally... the second round in particular, my mood was the darkest it has ever been. Even when I went through the depths of severe clinical depression, it was never as bad as that second week after round #2 of chemo. I finally understood how people can commit suicide... it was not just awful, but there was a certainty that nothing would ever change, that I would always feel that horrible, even though intellectually I knew that wasn't true, the feeling wasn't listening. Thankfully even though I usually have some dark days after each round of chemo, nothing has ever touched the awfulness after round #2. I think it was a combination of things, one of which was ultimately a highly positive sign: I was able after round #2 to go off the pain medication Dilaudid! Although I think withdrawal contributed to my drastic mood crash, the fact that the chemo had already worked enough to rid me of the terrible pain was a very positive sign. Led my oncologist to say treatment is "definitely working"

The last week/week-and-a-half of the cycle is my "good" week. I feel a little better day by day, and start to feel almost normal... just in time for the next round. This knocking-you-back-down-just-when-you're-feeling-better can become very demoralizing.

On Side Effects I puked once the second round of chemo, but after that we figure out how long to extend the anti-nausea meds. Knock wood, I haven't puked since round #2! This is great, I *hate* puking, and have never done much before in my life (could count the times I'd puked before chemo on my hands with fingers left over). To put it delicately, I've had a lot of digestive problems in my life, but always with the other end. After I went off the pain meds during round #2, the chemo caused diarrhea was no longer balanced by the narcotic caused constipation, and became more of a problem. Fortunately there is an Immodium protocol to follow as well.

I think it was round #3 or #4 where both Sterling & I seemed to have a minor gastrointestinal bug. This was very concerning because of all the "you're immunocompromised it you get an infection you could DIE" warnings. But I guess for a virus there's not much to be done/as concerned about, it's more bacterial infections that you urgently need antibiotics/medical care. We monitor my temperature pretty much daily, as a fever of 38 or over is the trigger to rush to the emergency room. Knock on wood, so far I haven't had that complication!

The side effects of chemo really vary, from person to person, but even from round to round. After round #2 I could barely eat - everything tasted disgusting. I hit my lowest weight ever in adulthood, and went & bought size 2 jeans that fit to prove it! We stocked up on Boost & Ensure & after a lifetime of being aware of a hundred little ways to cut calories, I found myself in the weird bizarro land of constantly trying to sneak extra calories in! Fortunately with subsequent rounds the taste changes haven't been so bad, my weight has stabalized around the normal level for my adulthood.

Another fun side effect of a couple of the anti-nausea meds is that they cause hiccups. I've been lucky that in my case it's been often enough to be annoying & amusing, but not truly disruptive to my life... one of the nurses told me some people have to switch drugs because they can't sleep for the hiccups.

I also get a few days where the bottoms of my feet are very painful. Even walking a short distance during this time is painful. Standing for any length of time is out of the question.

The worse side effect, and the most consistent & pervasive, is the fatigue. I tried to go for short walks around the block whenever I could, but some days it just wasn't possible. Of course, the less you do, the more your muscles waste away, and it's not like I was in peak physical condition before the cancer either. The physical fatigue is hard to live with, but for me the mental fatigue, or "chemo brain", is even worse. There are usually at least a few days each cycle when I can't even really watch TV, everything is beyond me, all I'm really fit to do is stare at the wall & breathe. It's sooo boring. I try to sleep as much as possible through that time, but even though I'm a champion sleeper & can sleep a lot, not even I can sleep all the time. Those days are the most frustrating.

On CAM (Complementary & Alternative Medicine) I went to see my naturopath during this time. I'm very skeptical of all the "miracle cancer cures" & unproven stuff, but my naturopath turned out to be a very reasonable person. He was very upfront that there's not really anything he can do to treat the cancer, that's the oncologist's job. What he could offer was a treatment plan to support my body & help manage some of the side effects of chemo. I had a couple high-dose vitamin C treatments, but have discontinued those as they are expensive & didn't seem to be doing a whole lot. I take the supplements he recommended irregularly, except for the high doses of melatonin he recommended at night - it seems to help me sleep.

On Mood/Attitude/Social Adjustment As I previously mentioned, after the horrible dark time I went through following round #2, I was dreading round #3 with a passion. My family started arranging to have someone visit during the worst part of each chemo round. While I appreciated the support, it was also a little frustrating that they were always here during my worst, I felt like not much of a hostess.

The thing that really affected my mood/attitude was reading & researching, both on the internet & books, reaching out to others with my sort of cancer, and basically discovering just how dire my prognosis really was. I discovered the prognosis was much worse than I was fooling myself into believing. While still on the hospital I had come across the statistic that only 4% of patients diagnosed with stage IV stomach cancer are still alive 5 years after diagnosis. I "met" other people with stage IV stomach cancer through the internet, all of whom had been told that their cancer was not curable, that they would be on chemo for the rest of their lives, until it stopped working & they died. Even though these other patients are doing reasonably well & still alive (they were all diagnosed months/years before me) was encouraging, the idea of having to live with cancer forever is a very different prospect from fighting it, beating it, and getting your life back.

I have always had issues with dying... it's a scary concept, the ultimate unknown. I've really had to face my mortality because of all this. I've broken down & freaked out, and I've had moments when I've been all zen & accepting, and everything in-between.

One thing that has been my saving grace throughout it all has been the amazing love & support I've received. Sterling, my significant other, has been nothing short of awesome, completely supportive. Not perfect, of course, we've had our misunderstandings & differences, but overall he's been a star. My immediate family have all been to visit again. A number of my extended family have taken this opportunity to reconnect & show support. And my friends & coworkers... they've been my lifeline to life outside cancer, making the trek out to visit me twice a week, to keep my spirits up & making me feel like I still have some connection to life. I will never be able to thank them enough.

On Results & Progress After round #4, I had a CT scan to check my progress. The results were very encouraging. The scan found no cancer in my liver, and the metastasis throughout my abdomen was much improved. There was no new ascites (fluid buildup in my abdomen), and even the primary cancer in my stomach looked improved. This was about as positive news as could be hoped for. Dr. Katakkar decided on another three rounds of this chemotherapy, followed by another CT scan, with future treatment to be decided based on the next CT scan.