End of Study Results: Great, Decent, or Just Sigh

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It’s been 3 ½ years since my terminal cancer diagnosis and I still hold out for the letter clearing the whole misunderstanding up. “Ms. Westerling, we apologize for any confusion. It seems like we got some images hooked up with your case file that were just, well, wrong; you are fine. Have a good day.”

My friends are ready to celebrate good news but the only good news I want is a full and complete retraction. Anything else feels like celebrating a delay in the inevitable. I know this attitude makes me an ingrate so do me a favor and don’t spread the word that I am unsatisfied.

This morning I finally tracked down my phase one end-of-study results. The lead up looked promising and I assured myself that the delay in the final details didn’t matter because, clearly, I am trending in the right direction. But judging by my response to the official ‘good news’, I was holding out for better.

Would I have been happy for the best-in-show possibility of No Evidence of Disease (NED)? A result that never denies that microscopic ovarian cancer is floating about. Or would any result in this relentless new life path of staying alive despite cancer have reminded me of how harsh this life path seems. (Psst, I want my old life back!)44678_258047887658324_1806155451_n

A growing debate gained volume this summer over relabeling some types of lesions out of the cancer lexicon. It lead to some juicy headlines that crossed my screen. Maybe in lieu of the letter I imagine arriving any day now, I could just rebrand my cancer. But that hope was dashed as well.

Now that I have had my wail, I must recalibrate to the small miracles that I am allowed. They add up. They extend life. They are worthy of celebration. My job is to adapt.

The End of Study results show that my volume of cancer has decreased but remains visible. The best I can get towards quantifiability (is it the size of an almond, the head of q-tip?) is this – I entered the study with a volume of 405, now I am at 44, a hefty and measurable drop for my loved ones to celebrate. I might just need a few days to stay grumpy at the 44.

In the meantime, Herman Wallace, after 42 years in solitary confinement, is released to die as a free man. Wallace2He is in the final days of liver cancer. What seems a bittersweet victory might be much bigger for him or so I hope. I wish him an end in some lovely, sunny field surrounded by the many who stayed by his side over the four decades rather than the hospital he is liberated too. But mainly I hope that breathing in his final breathes as a free man heals the hurt of injustice. And this I will celebrate.

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21 responses »

    • Maybe we should write each other letters! The rudeness of the testing is it takes me out of that easier cancer vacation state of mind – of I am just doing what I can, la-de-dah. I hate testing! especially since I was trained to excel and excelling has not been my cancer norm. xo

  1. It was a slap in the face when I was reminded that Herman Wallace was still in solitary confinement. I remember the Angola prisoners. I was more than mortified to realize that he was still there so many years later. I had forgotten about him. A horrible thing to say and do. The memory of the Angola uprising is still there for me, but I never bothered to find out that those events were still being enacted and embodied today. It was a reminder to be more active, to pay more attention, to struggle harder for justice, in spite of my comfortable life, or perhaps because this life allows me the ability to speak out for others. We cannot sit by, ever.

    You have been very courageous, and you will continue to be courageous, because that is your way. Nothing can erase the dignity and compassion you have. I just send you good will and energy, because there is not much else I can add. You have it already my dear.

  2. Dear Marcy,

    My sister has ovarian cancer (stage 3c) and is now on her 7th cycle of chemotherapy. She just started immunotherapy which we decided to do since the results of the chemo have not been very promising. I want to thank you from the bottom of my heart for sharing your journey through cancer. Apart from the invaluable information you share about the trial itself, your thoughts about life and dying has opened my heart and provided me with precious insights as my sister and I and her husband struggle to cope with the emotional and physical and financial demands of managing her disease. As you can see, I have decided to join my sister in this battle even before the diagnosis came out.

    I also want to share with you that I am also working on peace issues. I work with the UN and other global and national policy making bodies to end the impunity on rape and sexual and gender-based violence and that women’s bodies are not used as battle grounds. My organization and our members from around the world are also demanding governments to ensure that women are part of decision-making on peace and security issues and governance overall.

    All the best to you and please know that I am one of your many supporters. I will be praying that you keep your strength and grace in this battle against cancer. I truly believe in my heart that together, we will win!

    Warmly,

    Victoria

    • Thank you so much for sharing. The thought of my blog being of value means a lot! If there are any ways that I can support your team move forward, let me know and I would be most interested in hearing more about the wheres and whats for your immunology trial. My best to your clan! xo

      • Dear Marcy,

        Thanks for your reply. My sister is undergoing immunotherapy in Japan. We also explored the clinical trials at UPenn and we realized we can’t afford them and her insurance will not cover the fees that come with the trial. She just had her first vaccine yesterday. I will keep you informed as we continue with the procedure. I just have one question: when you started with your immunotherapy, did you also continue the chemo? Are you still doing chemo now?

        Thanks so much and as always, I’m sending you best wishes, more strength and lots of positive energies,

        Victoria

      • Where does your sister live? How did you find that trial in Japan? What made the UPenn trial cost too much? Sorry for all the questions but I am truly interested. I think UPenn is now requiring that all incoming patients use store my tumor which is an automatic starting cost of at least $5000! And no promises of entrance!!!!!! I needed to transition to medicare before I could ‘afford’ a trial because my hmo would not cover off site costs. Many, many barriers but now my only costs are travel which is big! chemo is mandatory w.my trial – the day before the vaccines I get cytoxan and avistan. I must continue that during maintenance or drop out. But since I still have visable cancer that is to my benefit, alas. The chemo is destroying my hip bones.

      • Hi Marcy,

        My sister lives in Japan. We were given an estimate of about $200,000 + to cover chemotherapy, blood work, X-ray and perhaps other procedures as well. I think the costs are this much because she will be taken in as an international patient.

        I’m very sorry to hear about the side effect of chemotherapy on your hip bones. My sister just started on Topotecam, her 7th chemocycle. She is having severe gas pains and she is throwing up a lot.

        Warmly,

        Victoria

  3. Marcy,

    Thank you for sharing your end of study results with us. You continue to have such a great spirit!

    Although your results weren’t exactly want you wanted them to be they are very impressive! From a tumor volume of 405 to 44 is a 90% reduction! Try to remember that the best thing about immunotherapy is that your immune system has now been boosted to fight off those pesky cancer cells. So perhaps you will continue to see even more reduction over time……particularly since you still have some remaining vaccine that you will be taking.

    In some of the research literature on immunotherapy trials that I have looked at there have been individuals who have had significant tumor regression like yours and it stayed at that smaller volume for quite a long time. I am very, very impressed with your results at this stage of the clinical trial. Plus if needed, there is always Phase II of the study.

    Hope you and your family/friends will celebrate!

  4. Marcy, as always thank you for sharing. While I, too, wish you a total remission, I do want to celebrate the fantastic reduction of tumor volume to just 44! That sounds like an incredible accomplishment and a tribute to your hard work to regain your health. Stay strong, my friend. Power of positive thinking and all that…

  5. Wow! I too wish to celebrate your 90% tumor burden reduction, and hopefully, you will find it worthy of celebration as well. Your very own prescription is indeed the key to moving ahead: “… I must recalibrate to the small miracles that I am allowed. They add up. They extend life. They are worthy of celebration. My job is to adapt. …” Well put, and well done, Marcy.

  6. In numerology 44 = 8 and in general the number 8 has the following qualities:
    Resolves dualities, expansion, dissolution, dimension of the timeless, good and bad, right and wrong, day and night, ability to see and relate to eternal dimensions, balance between forces, connects spirit and matter, developing confidence to follow a vision, breaks down barriers to transformation, reality, courage.

    I hope you find this an interesting synchronicity. I certainly did. Many blessings, Marcy.

    N.

  7. Hello Marcy. I am so happy that your tumor volume is so much smaller than it once was. This is a definite step in the right direction. I pray that your health continues to improve and that ultimately you will be NED. Your positive attitude and your determination is certainly helpful and I hope for your continued improvement.

    Keep the faith!

    Abrazos, Yvonne

  8. BRAVO for your honesty and your accomplishment! Those accumulating immune cells must be dancing! and bravo for helping so many others by sharing your story!

    xoxo judith

  9. It does feel weird to be psyched with stability. Clearly I’ve been assimilated to think that way.

    I think those are pretty darn good results. But, as you know, you are allowed to look at it anyway your heart desires! xoxo

  10. Marcy — thank you for this blog. All the research seems so overwhelming to me and not something I am good at so it was good to read about this trial from someone who is actually going through it. A fellow ovarian cancer friend recommended your blog to me as I mentioned to her that I am looking at this same trial at UPenn. In fact, my husband and I are going to see Dr. Tanyi next week and we’ve been working to put together all of our questions….so many questions….immunotherapy gives me hope that things will change for OC survivors!

    • Congrats Laurie, I think you will appreciate the team. Quite dedicated and caring. If you enter the trial we have a great inner communication loop amongst those in the trial. Very supportive! And if you scroll the blog know that all the harder parts are exaggerated for the benefit of good storytelling. It’s pretty easy! Where do you live? And how old are you? I fly back in for treatment on October 21st. Wishing you the best! Warmly, marcy

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