22nd Newsletter -
Hello All,
It’s been a month and a half, now, since my putting out my last update and there is lots more news to report. Unfortunately, most of it not good!
I was able to participate in my clinical trial for six weeks before the clinical trial doctors told me that it was not working. I was able to get two doses of the new drug, Pembrolizumab (also known as Keytruda), but getting these doses was painful for the wrong reasons. I had to pay a $2,800 cash advance to get the 1st dose, after my talking them down from $18,000, since my medical insurance approved the treatment a day later. I caught a respiratory infection, when I was scheduled to get the 2nd dose, where I had to convince the clinical trial doctors that I was well enough to receive it. You see, clinical trials have rigid rules and schedules and if you can not get your scheduled dosage within a three day window, for any reason, you are out of the trial. No pressure.
Now, going back to Houston for my 3rd dose, back on May 3rd, is where things went bad. Having some shortness of breath, when I walked, caused the clinical trial doctors to admit me to the hospital to determine the cause. It seems that when I was only doing the clinical trial for treatment for the past six weeks, with no benefit, my tumors in my lungs grew in both number and size. So much, that it was affecting my breathing, which quickly got worse. Again, this was devastating news to Denise, myself, family, and close friends! Our latest shot for a cure failed, BUT we are not done! We always had chemotherapy for a treatment option, which put my cancer in remission in the past, for small periods of time, but even this option was going to be more challenging, now, since we waited so long!
Now, this brings us up to date. I am writing this update from inside my hospital room, where I have been, now, for about two and a half weeks. Even though I received chemotherapy on May 9th, which immediately started killing the cancer in my lungs, I could not be released from the hospital until my oxygen saturation level (i.e. breathing) rose sufficiently well enough so that I could breathe outside the hospital, with or without, home oxygen. Until just recently, they had me hooked up to a special “high flow” oxygen machine in my hospital room, which significantly restricted my getting around (i.e. I could only move as far as the machine’s oxygen hoses extended… my bed and a chair). However, yesterday, my lungs have healed sufficiently enough that I was able to be removed from the “high flow” oxygen flow machine and I was put on regular room oxygen, which, now, allows me to walk the floors with supervision and I most likely to be discharged from the hospital tomorrow, Monday, May 22nd. This improvement was nothing short of miraculous!
So, as my breathing is continuing to get better, my regular, non-clinical trial, medical team of doctors is determining when and what my next round of conventional chemo will be, which should put my cancer into remission, again, HOPEFULLY, long enough to start a new treatment, FOR A CURE, again, either in Houston or Boston. As it stands today, my next round of chemotherapy should start shortly after Memorial Day, if all continues to go well. As always, I have my loving wife, partner, my “everything”, here, helping me through all of this! Her smile brightens my every day! I, also, have my loving twin brother, Bob, here, as well, wanting to be involved with everything that is going on to assure that I get well! Let’s just say that my back is well covered! Some days, I tell the nurses that I am going to change places with Bob, just so I can go out “on the town” with my honey, Denise, where they laugh, BUT caution me. Last, but not least, Denise and I would like to thank those working behind the scenes on our behalf. My sister, Betty, husband, Kevin, their lovely daughter, Ali, and other family members, have been scouring the world for the next best treatment for a CURE (or at least potentially offering more time)! There tireless efforts, while balancing work and home life, does not go unnoticed and without our appreciation! Thank you! In addition, we would like to thank Denise’s twin brother, David, and his/our girlfriend, Lisa, for taking care of our yard and home, while Denise and I continue to address my ever-changing medical conditions! With their help (and our numerous great friends that have also offered their help, as well), it is one more big thing that Denise and I don’t have to worry about! When people ask when we will be coming back home, I tell them the decision will NOT be based on medical reasons, but when David finishes our yard.
So, sorry for the not so good news, BUT Denise and I (and our families) are committed to beating this terrible disease, no matter what it takes!!! As I have said before, I have it too good with Denise, our families, and ALL OF YOU, to just walk away!!! That is just not happening!!!
Denise and I hope that everything continues to be well for all of you and again, and again, thank you all for your love and support!!!
With all our love and appreciation,
Bill and Denise