from Nov 24

I have been meaning to provide an update, but hesitated since I really don’t have good news to share. In the past month, I was on a drug combo which proved to be intolerable. I was on the brink of hospitalization 3 times. As a long term cancer patient, I know too well that once you tip over this brink there is often times no coming back. So, we had to make the difficult decision to discontinue this drug. For the first time, I could not get control of the side effects and I was losing my strength with the inability to eat and being house bound for over a month. This was very challenging while I attempted to maintain as much of a daily routine of normalcy for Alex. Unfortunately, being on just one of the two drugs is not stopping my cancer from progression and seems to have hit my white count, so I have to be bubble bound. I have used my options of drug combos in just 3 months. We are now left with seeking compassionate use of a drug PD1 and/or PDL1 from Genentech, Bristol Myers, EMD Serono, Merck, and CureTech(Israeli company). If any of you are familiar with this process, the odds are stacked against me. It is just the nature of the way drug approval works. Jim is using his company to reach out to these companies. Plus, we know from my doctor and a doc at Cedar’s that they will both get one of these trials (phase 1) starting in January. This was already pushed back from Nov as this is a process as well. I am on waitlist for this trial in Portland. This is an immune therapy which is something I haven’t yet tried. Phase 1 is the guinea pig stage, but I don’t have much choice now. So, there is some juggling of what is the best decision for me while my cancer progresses. We hope that I do not become sicker from the cancer. If I am not well enough by January, then I am unable to get into the trial. With so much uncertainty, this is the most stressful place my family has been in. I choose to keep fighting because I have worked too hard for over 3  ½ years to do anything different. I have been in the place where my cancer progresses before, but having nothing left in the bag of tricks is different.
At this time of Thanksgiving (or Thanksgivukkah), I choose to be grateful. I am grateful that I am alive. I am grateful to have such wonderful family and friends who have supported me all along this crazy ride. I am grateful for the small things (as a very dear friend said to me) will be the big things. I ask you to take a moment when you get caught in the whirlwind of what this season brings to think about how Jim, Alex, and my family live day to day with so much uncertainty and know that as big as your troubles may seem, you and I both have today. Choose to live in the present and be grateful for today. I am fighting harder than I have ever fought before. I am hoping and praying that I can stay strong and remain positive. This is a very scary place to be, so again I take things minute by minute. The sun is shining and even though I am unable to be around crowds, I can be outside in the crisp cool So Cal weather. Next Weds is chemo again, so I wish you and your family a happy Thanks-giving! Be thankful, be grateful, and be present.
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2 Responses to “from Nov 24”

  1. terry fierle Says:

    I am learning from you Joanie. You are spreading so much love and wisdom. I love you and wish i could be near you but understand your bubble.

    Love ,

    Terry

  2. Diane Peters Says:

    I love you Joanie-girl! xoxoxo

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