It seems of late I’ve started every post by saying something like, “it’s been so long since I’ve given an update.” And considering my last post was in January, this one isn’t any different. Let’s just say there’s been a lot going on. A lot.
So I am going to start with a question. Would you like the good news first or the bad news? Hmmm. There is no one reading to answer so I’ll have to do that for you. Let’s go with the good news!
It’s actually GREAT news! After many months of documentation, proofing, and so many other things I can’t even explain, the FDA has given the personal vaccine trial approval to move forward. YAAAAAAYYYY!!!!! That means all of the money the Peabody Fund (You!) raised, ($220,000+) as well as the generous $1,000,000 gift from the Strauss Family, has given 11 patients the chance to be in this cutting-edge vaccine trial and hopefully change the future of cancer cures! We found out Friday afternoon and we’ve all been on cloud 9 ever since. It’s surreal, almost too hard to believe. The only person who might be more excited is our fierce leader, Dr. Ezra Cohen. This has been his passion, his hard work day-in, and day-out, for the past 3.5 years. We spoke with him on the phone and thanked him profusely. But he said to us that this wouldn’t have happened had we not started the fundraising. He is so humble, such a gentleman. We are so blessed.
I will be the very first patient to begin this trial and to do so I have to go through a thirty-day ‘washout’ of my system. No other immunotherapy drugs, chemo, etc. can remain in my blood. Thankfully I ended chemo treatment last month so we don’t need to worry about that. If things go according to plan, we can expect to get my first injection around July 11. We have a few hurdles to overcome; mostly documentation, and of course the lab in the Netherlands has to manufacture my vaccine. That’s kind of important. : ) I promise to update you all when things are a go. We are so anxious to get this vaccine in my body!
This is probably a good segway to my bad news (insert unhappy face). The reason I haven’t been writing is that I’ve been very sick. I’ve been hospitalized five times since December, for multiple reasons. I had a recent MRI and CT, and the tumor near my ear continues to grow (but not further along the brain stem, which is great) and the metastatic cancer is worrisome. I have several large lesions and enlarged lymph nodes. I have a plum-sized tumor in my left lung which is causing uncontrollable coughing, and another in my right lung, just slightly smaller. It seems all of the immunotherapy and chemo drugs I have been on did little to stop the growth of cancer. My doctor is concerned and so are we. If the vaccine doesn’t work, we have no other options available today. At this point, we are also trying to buy time. The field of cancer research is moving so quickly, you never know what might arrive on the market in two months.
I am also very weak and spend my days in bed. I haven’t been walking outside or doing yoga; two of the things that I love so dearly. Even a massage can be painful. (not fair for a spa owner!) I rarely visit with friends because I’m in such bad shape. The pain from the tumors causes so much turmoil in five different parts of my head that I am medicated around the clock. Sometimes they cause cognitive deficiencies, which is so hard for me to tolerate.
All of that said, I am going to end on a happy note. I pray several times daily, for others and for myself, and it brings me so much joy. And, I want to thank you for the prayers and beautiful notes with words of encouragement that you send my way. They mean so much to me and help cure the darkest of days. I could not have made it through all of this without you and your love. I have so much gratitude, it overflows. On days when I can barely get out of bed to brush my teeth, I think about my family and friends and can’t believe I’m so lucky to be the recipient of this love.
We have one more month to go. . . and I’ll be on the path to a cancer-free body!