As I was looking back on this year, since January, I realized that despite the nausea and other side effects I experienced last year with the chemo I was then on, it was a breeze compared to what has happened and what I face this year. Last year, I dreaded chemo more and more as time went on. When I look back, however, it does not look so bad. I had chemo every other week. It worked to shrink the tumors. For three days, I was miserably sick. For some days during and after I experienced some pretty bad side effects other than nausea. The day after my three days of chemo, I was exhausted, but then I bounced back and had ten days I could count on where I became stronger and stronger and had stamina. We travelled a number of times for long weekends. I hiked. I enjoyed good dinners, company and wine without much limitation other than generally staying away from red meat which is hard to digest. I was never so sick I had to be hospitalized. I knew the routine and could count on it. While I did not love how awful chemo made me feel, and while the cumulative effects made it worse and worse as the year went on, I could count on the ten days I felt relatively good and make plans based on them.
This year has not been so routine. In late January/early February I was hospitalized for 11 1/2 days, was very dehydrated and then had to recuperate. I then learned in March that the cancer was growing so that my short break from chemo would be over. That meant starting the process of reviewing my options once again, going to MDAnderson in Houston to explore their clinical trials and then starting a clinical trial chemo at Karmanos. While I liked the fact that the new chemo was not as rough – I had nausea but it was not unremitting, and the chemo was three weeks apart rather than every other week, I never had the full benefit of two weeks off. After the first round of chemo, I started bleeding heavily vaginally and spent much of the second week going for tests, getting biopsies and seeing another oncologist. The second round of treatment was worse. By the Sunday of the second week, in mid-May, I was doubled over in pain, in the emergency room and then spent nine days in the hospital. That hospitalization was more serious than the first. I was in great pain at first. I bled internally. I almost had serious surgery and was lucky to dodge that bullet. I came home much weaker than the first time. The recuperation from that hospitalization has been much slower and I run out of steam most afternoons late in the day. My digestive system has greatly slowed down and is no working that well. I have what looks like a pregnancy belly that always gives me some pressure, and which definitely interferes with my yoga practice. While I am getting better, I am still not at my level of strength and stamina before the hospitalization.
Last week I was sent for an MRI and for draining of some of the fluid around my belly to test it. I received the results this week when I went to my oncologist. The fluid contains live cancer cells, which means the cancer is growing again and my second type of chemo is not working. This is frightening because these cells are obviously migrating. I now, 14 months after being diagnosed, face the fact that there is only one more FDA approved third type of chemo for gastric cancer and in Dr. P’s words, third rounds of chemo are usually not as effective. There are clinical trials, however, and Karmanos has a trial of an immunotherapy drug that has shown great promise and for which I would be the first Karmanos patient registered. Unfortunately, I do not know yet if I am eligible because they have to test my tumors and I have to do yet another biopsy because the trial requires one within six weeks. I told Deb and Judy yesterday that I feel that I have been poked and prodded nonstop since my diagnosis. While I never get used to the discomfort, I accept it as part of the price I have to pay.
When I received this news from Dr. P earlier this week, I was devastated and spent much of the day crying. In fact, I almost ran out of Karmanos, because I wanted to get home and lick my wounds. I rushed out so quickly, I realized once I was driving my car that I still had a line hooked up to my port that needed to be removed. I had to turn around and go back. I am stubborn and strong, but this cancer is stubborn too. It is really trying to kill me, and I refuse to give in, but I am worried about how fast I have come to this point. Emotionally, I am much better today and continue to visualize myself healthy and cancer free. But until I know whether I can be in the trial, I will have underlying stress which I can feel. Stress is not a good thing for cancer. I have been meditating every day to relieve it, have been doing yoga, and have been focusing on enjoying life. Right now, however, as I write this post, I can feel the stress.
I knew starting this journey there would be setbacks, but knowing that in the abstract and knowing that in reality are two different things. I am also angry at the circumstances in which I find myself once again. It is not fair. I did everything I was supposed to do to stay healthy – ate well, exercised, tried to keep my stress down, but despite, that I have advanced stomach cancer that simply does not fit my lifestyle or age. I am one of the lucky random people for whom no explanation exists for why I have this stomach. There are many of us. I know I am not the only one who feels this way. I would guess that everyone who has cancer has similarly thought about the unfairness of having cancer cells trying to kill them. I know plenty of people who have faced this fight, most of whom survived but some who did not. All of them thought it was not fair. All were surprised by their diagnosis.
While I wait for my tests to be scheduled and wait to start treatment (waiting is hard because I want to aggressively attack the cancer), I am determined to enjoy my life, live my life and I continue to visualize myself as healthy and whole. Everyone who sees me says I look fabulous, that I do not look like anything is wrong with me, and that my yoga practice continues to be strong. When I hear that, I sometimes think the outside of me is not matching what is going on with the inside, but then I decide that the outside is matching and that I will continue to be healthy. I tell people I am not sick – I have rogue cells that need to be destroyed.
My friends and family have surrounded me with even more care and love since they heard this news. They continue to offer prayers and thoughts for healing, which I accept gladly. They continue to tell me they know I am a survivor and as the days have gone on, I have gone back to thinking that as well. On the day I heard the news, I did feel beaten. I woke up the next day angry instead and back in the fight. Onward and upward.