Yet Again

I am sitting in a hotel room in Arizona, here for a member’s meeting of my law firm, and cannot stop thinking about writing this post, which has been in my head the last couple of days. I had planned that my next post would be about the delayed trip to South Beach (so much fun) with my friend Jackie, my cousin, Mary, and my daughter, Sara, but that will have to wait. This is about the results of my scan.

I learned the results a couple of days ago. While my lymph nodes are now clear and my stomach tumor did not grow, there are a couple of new spots on my liver. That means the cancer is back at it and is growing. I had hoped for a couple of months more reprieve before facing this. I have felt amazing over these last two weeks, and was almost sure that I would be told the cancer is stable and that my doctor would see me in a couple more months for the next scan. Unfortunately that did not happen. Instead, I am now faced with yet again looking at my treatment options, getting a second opinion and then making a life and death decision about what option to pursue. I told my husband and my friends that it feels like I am back to where I was when I learned I had cancer; that I am starting over. Of course, this time, I have doctors helping me, helping research the options, giving me input, etc.

When Dr. P broke the news to me, Lynette, his nurse practitioner, said they were researching more “creative” approaches for me, given how strong and healthy I am and how I have bounced back. We discussed the fact that the chemo is not expected to wipe out this cancer, and that if I go back to the chemo I was doing, perhaps it would stabilize it, but given how soon the cancer began to grow, its not the best option. I agree – I want to be at the forefront, doing something that has a better chance or either wiping this out, or giving me a longer time before net treatment has to be decided. My aim is to last and last until they find the solution that does wipe this out of my body.

After a lot of discussion, we concluded that I and they should explore getting into an immunotherapy clinical trial targeted at gastric cancer. While none are Phase III, there are Phase II studies. Deb immediately went to work, looking online at clinical trials. I reached out to Dr. K at Sloan-Kettering because they have trials. I also reached out to a friend at Johns Hopkins who works there for a contact I could meet with. THe next morning I asked the attorneys in our Dallas office for contacts at MDAnderson for such immunotherapy trials. My colleagues immediately went to work and now I am to get a call next week from the clinical trials folks there and also I was given the contact for the lead gastric oncologist there. I work with wonderful people….

Sloan has already reached out and I will hear from them on Monday. I have already had multiple discussions with my team at Karmanos, who said they have spent the past 24 hours on me. They also advised that they have a trial specific to gastric cancer, but that first I have to do one more chemo treatment (meaning multiple treatments). If after that my cancer starts to grow again, then I am eligible for their trial. So I am working, busy and at least feel a modicom of doing something. This always makes me feel more in control, and also distracts me from simply stressing about the news. While I have more help, this is such a deja vu from just eleven months ago when I was going through the same thing. It is a lot of work, a lot of pushing, a lot of questions to get the information. I will have to get names and numbers from Sloan and Anderson, get my records to each, meet in person with them, get tested and then be told whether I am eligible, if they even have trials that are good choices for me. Sigh…I had so hoped I would not be facing this so soon.

When I was given the news, I first took it calmly but then began to cry. I cried in front of my team at Karmanos and received many hugs in return. Every time I told someone the news, I cried, even today when one of my partners, Lori, came up to me. I am very emotional right now. I was so anxious after I heard the news I ended up sleeping on the couch that night, and when I awoke in the morning, my mouth was dry and I was shivering from the stress hormones. My first reaction was that I was not going to Phoenix, that Alan and I would also cancel the days we booked after our firm meetings to hike, do yoga and just enjoy ourselves in the sun (he skied while I sunned it up in South Beach), and that instead I would stay home and work on getting my appointments set up. The next day I was convinced by Alan and others that sitting around the house would be worse, that I could do everything I needed through my phone and computer and if I got an appointment this week, just get on a plane and go there. Now that I am here I am glad we came. I am no longer feeling overly anxious although I am still very bummed out about this and still easily brought to tears when someone who knows me comes up and says how badly they feel that I did not get more of a break.

I knew this would be a tough fight, and this just brings it home. I do have advanced stage cancer. I do have a cancer that chemo does not wipe out. I do have tumors, while small, in my liver and the liver is one of the more difficult areas with which to deal. The odds are very tough. I did not expect a long reprieve, but given the lengthy hospitalization I had, this one was not as long as it appeared. Hearing this news makes all of this bear down on me, at least for a time. I tell myself I am entitled to feel upset, entitled to feel down a bit, entitled to cry, because this is hard and I need to acknowledge that. But my focus now is getting the opinions, getting my options and making a decision in the next couple of weeks.

Having cancer is life changing. For a few weeks, I went about my life without sickness, getting stronger and stronger, able to again drink water without it tasting metallic, doing my entire yoga practice, having a lot of energy, and not having to think about cancer or treatment or any of the nausea and other symptoms that go along with it. While I still have bad neuropathy, it has been slowly improving. I have also started taking supplements as part of my alternative treatment. It has not been long, and I will continue to do that so long as nothing interferes with whatever treatment I end up doing next.

Now it is time for me to practice what I preach – to enjoy the time here, deal with the calls and appointments I am trying to set up, but otherwise, do yoga, hike, attend the meetings, the cocktail hour, the dinners, and enjoy myself.
I told Alan that I will not hear from Sloan or Anderson until Monday so this weekend I will put it out of my mind, enjoy the time with my friends and my husband, and relax. For the most part, I have done that today, other than, of course, crying with my friends from work and talking with my doctor’s office. I do have to say as Lori and others from the firm told me I am a role model in how I am handling this, I thought that at the moment and over the last couple of days I have certainly not felt like a role model. I old them that the last two days have not been that great, that I was very down and discouraged, and not feeling like the fighter I know I am. They reminded me that I am entitled to feel that way. They re right. I am sure will have more moments like this, and more ups and downs, but now the fighter in me has to come out again. Worrying and being anxious does not make this go away. It takes the joy out of life. It makes me unhappy. It makes those around me even more anxious. Poor Alan has been just as stressed since we heard. Letting the cancer and stress control me, and mess with my head, is not the way to beat this cancer.

The next chapter in this fight is beginning sooner than I hoped but it is here, and now I will deal with it, with the help of the many, many people who have supported me and continue to do so. As my friends have said to me over and over, F**** Cancer. There will be no more messing with my head – my head is back in the game and I again visualize myself strong and healthy many years from now. I will not let this news stop me from living.

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10 thoughts on “Yet Again

  1. karen says:

    Marilyn I love love love your fighting spirit….you face this disease head on and ready to do whatever it takes. And you surround yourself with advocs who join you in this fight. If anyone could beat this, it is you. Take this time to regroup sand enjoy everything you love….then follow your heart and do what feels right. Be well e and at peace my friend. I wish you were in Tucson instead of Phoenix so I could see you. Enjoy the AZ sun. Love and peace. Karen

  2. Becky says:

    I am so very disappointed for you and cried when I read your post. By the time I was finished I was smiling and cheering you onward. I’ve seen you in action and you are one of the bravest warriors I know. I am thrilled with the support you have, which I know helps you stay strong. Go forth and F*** Cancer!!

  3. Jean Ritok says:

    Marilyn, true champions have to navigate through the “valleys of despair” when it seems like hope is fading. You are a true champion from where I sit (!) and here you are: already digging deeper and finding new ways to keep your fight going. So many of us are pulling for you! You go, girl!

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