For the first time, in the past few weeks, I have been experiencing symptoms, not of my treatments, but of the cancer that is progressing while I wait for treatment. Aside from the fact that my pregnancy belly continues to grow and is now pressing on my diaphragm, leaving me short of breath, I have been having almost daily bouts of nausea, some worse than others. In some cases, the nausea has lasted rom morning to night, reminding of the lovely days I was on chemo last year. Mostly, however, it has come late in the day, making my late afternoons or nights miserable. This has limited what I can do. Last weekend we cancelled dinner with Jackie and Joel on Friday night at a restaurant we really wanted to try because I was feeling too nauseated to go out, and then, on Saturday, after I got ready to attend my friend Joe’s annual summer party and met Deb and Norm for an early dinner before going to the party, instead, I barely ate dinner and Alan and I turned around and went home. Since then, I have stayed away from making plans at night. Last night was an exception – I felt pretty good all day and agreed to meet Jackie and Joel for dinner. Unfortunately, by the time we got to the restaurant I had full blown nausea and could barely sit there and eat. I realized that, at least for now, I better make plans for lunch, not dinner. When I feel that way, I hunker down, the couch is very inviting, and I try to be as still as possible.
This has also meant cancelling our trip to Napa and definitely nixing any plans to go to my nephew’s wedding in California. At the moment, I am in no shape to be drinking wine and eating wonderful dinners, nor can I plan enjoying a night time wedding after the long travel to California. That does not mean I will not be traveling later this year – I just have to start treatment and start feeling better so that I can count on being able to enjoy the trip. This does mean that I am resentful at the limitations this is causing in my life. I am used to doing what I want and doing it even if I have discomfort. Nausea is another thing. It is debilitating. It is impossible to enjoy anything or even concentrate much, when you are nauseated.
While this has been going on, I continued the waiting game. Until yesterday, I had no confirmation when I would start immunotherapy. We were still waiting to hear from the clinical trials’ sponsor. On Tuesday, my worse day this week, when I woke up with nausea and went to bed with nausea, in my frustration I actually said to my friend Rena, when she said Karmanos still had not received confirmation that I could go forward with the clinical trial: “Don’t these f**** people realize people’s lives are at stake. What is taking them so long!” She told me to go ahead and express that frustration – she felt it too. Then she suggested I speak with their social worker the next day to deal with the emotional toll this has taken. The nice thing about that suggestion is that I ended up getting a free massage at Karmanos the next day as a result of the social worker. That was heavenly.
The emotional toll of the waiting and the increasing symptom is huge. I have, and can, cry in an instant. This comes from frustration, from anger, from just feeling crummy overall and from the delay, delay and more delay. It does not take much to get me going. I am certainly a very strong person but even the strongest person would be tested by these events. On Monday, Alan and I sat on our couch holding each other and crying together. He is as frustrated as me, and also clearly so worried. Every time he looks at my belly it reminds him the cancer is progressing. He researches the reasons, and he knows that the fiberous tissue now growing like spiderwebs around my belly is a symptom of progressing stomach cancer. I know that too. I do not read the research, through, because I do not need to. I can gauge what is happening by the way I feel. He told me earlier this week that when we promised to love each other in sickness and in health, his thought was that I would take care of him and outlive him in our old age, not the opposite. I told him I know, and I still plan on being around.
The biggest emotional toll on me has been fighting the sense of fatalism that can take over when I am clearly feeling limited, and not up to the physical strength I expect of myself. Yes, I am doing yoga, but certainly at a slower and more modified level. Yes, I take the dogs out, but the walks are short. Yes, I meet friends for lunch most days and am fine, but I make no plans for long walks, and make no plans for anything approaching evening because I am not sure I can handle it. I know that I have already beaten the odds with the advanced cancer I have, but that is not enough. I want, and plan, to continue to beat the odds. However, over the last few weeks, as I felt my symptoms increasing, I had to fight the feeling that this may be it, that I should not expect a long life, that I was fooling myself. I thought about family, friends and colleagues I knew who had lost their battle with cancer. My mother in law, Libby, was only 56 when she died, and was so full of life. How I wish she had lived to see her grandchildren grow up. My close friend Sue, whom I loved and whom my children loved, was a beautiful soul. Sue always had a smile for everyone, always saw the best in everyone, and told me every time she saw me that I was beautiful. I also remembered my colleagues and friends, Kathleen L., Dan S., Fred M. They were vital people, full of life and had so much to give. They died too young. I also thought of my sister in law Sue, who is one of the strongest persons I know. Sue has survived Hodgkins disease and breast cancer and is now dealing with heart problems caused by the treatment she had over 30 years ago for Hodgkins. Her attitude, strength and ability to handle adversity are an inspiration to me.
It is funny how you can go into a dark place when you are feeling terrible, and helpless. I refuse to stay in that dark place because it does me no good and does not help me survive. Fatalism gets me nowhere. I truly believe that if you believe that you are going to die within a certain period of time, that you have no chance and that those beliefs will come true. I refuse to so believe. I refuse to give in to that darkness. There are no guarantees, but that goes both ways. The odds may be terrible, but I have beaten and will continue to beat the odds. I will not concede that there is a specific time I am allotted and that is it. Instead, even if I cannot plan going out at night right now, I will continue to live each day. The treatment is starting and that has taken away most of the frustration I have felt. Other than my now 8-9 months pregnant belly, I look fine, and I feel vital (except when I am miserable with nausea). People who see me say they cannot tell there is anything going on with me and even as I modify greatly my yoga practice, I was told the other day by a newer student in my yoga class: “You must have been practicing yoga for a long time.” She did not see me as limiting my practice. She saw me as the long practicing yogi I am and have been. So, instead of focusing on my limitations, I will focus on what I can do and will continue to do.
My plan is to go somewhere with Alan in a month or two where we can enjoy each other, to go to Utah at the beginning of September to hike and then at Christmas to ski, to go back to enjoying dinners with friends, and to go to South Beach, again, in February, with my daughter. I also plan to spend time in Florida visiting Judy and Deb who will be there all February. Fatalism has no place in my plan to live life. I will not only survive, I will live and focus on the good in life. Now, I plan to go outside and enjoy my garden and this beautiful afternoon.