I have not written in weeks because there was just a dribble of this and that, nothing warranting a blog post. I will get into the bits and bobs of my news after sharing a wonderful family announcement. My Brother JJ and his wife Nahanni welcomed their first child, Natalie, into their lives. Welcome to the world little forest elf, I wish you a happy and healthy life adventuring across Alaska with your adoring parents.
My news, unfortunately, come from the other end of the cycle fo life. My blood test suggested my 4th round of chemo did not shrink my tumors. Dr. W wanted to try one more cycle, so I had my 5th cycle last week. On Monday, tomorrow, I have yet another scan to see what is going on. I hope I am wrong, but this past week I am having increasing pain behind my sternum, which makes me almost certain the tumors are indeed growing. Having tumors grow while on active chemo is a scary and depressing place to be.
Since I have developed hypersensitivity to platinum drugs and the Gemzar seems to not be working I think the options going forward are very limited. Dr. W has a plan, but when he says I still have treatment options I think he means months, not years. And in the state I am in I don't want to live like this for years. I am so tired. I have pain. It is a major effort to get out of the house. The good day to bad day ratio is quickly shifting to become unlivable. I am usually fervently optimistic but I am out of hope. Too tired too manifest it. In too much discomfort to make joy. If there are more good days ahead I will keep fighting. But I have arrived at today wondering when is enough, enough.
Some of the happenings from the past two months.
My friend George texted me just moments after the DEA approved his application to grow Cannabis for science. He waited 5 years, jumped through hurdles and hoops, built a grow facility that rivals Fort Knox, costing what I can guess is insane amounts of money, all so he can grow a plant for science. Let's put this in perspective. I could walk to BevMo, buy enough alcohol to kill myself, easily carry it home in one grocery bag and the cashier would simply think I was hosting a party. And alcohol is the leading cause of cancer, yet it is legal. The chemo drugs I have been subjected to over the last 5 years are so toxic there are mandated lifetime limits, when the toxicity is considered too dangerous for the potential benefit. You think Cannabis is too risky? Come back and talk to me after you have had 19 Carboplatin cycles, 12 Paclitaxol cycles, 6 Doxilrubacin cycles, dozens of Avastin infusions, 5 Gemzar infusions, and are starting in on Pematrexed. Yet Cannabis is non toxic to healthy cells. Every science lab has numerous chemicals that are harmful, molecules that can kill with just a little sip. (chloroform, formaldehyde, acetonitrile) There are 500 Schedule 1 licensed researches in the US, desperate to do life improving, life saving science that are hampered by the DEA's onerous regulations. These inconsistencies are tragic, based on stigma, not science, and just may be what kills me. Miracles are trapped in this plant, and if I am not here to say "I told you so", remember I knew it was back in 2018. And I spent the last three years of my life desperately fighting for the science that might save my life.
During the past two months I have had a few good days, fortunately they coincided with Rosa's visit. I was feeling well enough to walk the loop around the whimsical "Froggy Shrine," one of my favorite places in SB. We even went out to dinner for the first time in 16 months, which was equal parts enjoyable and nerve-racking.
My mom also came to visit. She helped with errands and housewifery I have been too tired to tackle. She gave us desperately needed haircuts. And slathered us with love.
It is ridiculous, and says much about my physical state, that buying a new couch was life changing. I have been lounging on it way too much, grateful for a more comfortable place to be. And we love our new little friend, a Bernie doll who magically explored the house every night and ends up in a new place each morning. Thank you Lee, I love him!
On my good days I make every effort to find joy, one such day I visit Jessie as she skillfully chalked her way to another gorgeous I Madonnari masterpiece.
Last but not least, a huge thank you to everyone who is participating in the meal train. I am grateful, and so is Bruce, for the lovely dinners you have been sharing with us. I had grand plans to write each and every one of you a thank you note, but I just don't have the energy to make that happen. Please know I appreciate your efforts to help keep us fed.
I will add an update right here, at the end of this blog post, so check back in a few days if you want to read Dr. W's plan for treatment.
I was right, unfortunately. Monday's scan and tumor marker show growth. My CA is up 50 pts in three weeks, while I was on Gemzar, devastating. Disappointment is all about expectations. The data suggested, and I expected, to get back into remission for about 10 months on the drug regime of Carbo/Gem/Avastin. 80% of women do, but I am in that unlucky 20%. And while this line of chemo did reduce my marker from 2,000 to 200, in just the last few days the pain has increased exponentially, becoming just as bad as it was in March. It is frightening how fast health can deteriorate. I took Tramadol, the lowest grade opioid, it did nothing to dull the pain. I switched to Norco, a stronger opioid. Norco are shorter acting, so the pain woke me up the the wee hours of the night. And when I take a Norco during the day, I am loopy and more drowsy than on 10 mg of Cannabis. I do not want to live like this. For the first time I am seriously considering refusing treatment. I called my Hospice counselor to schedule the exit plan discussion. I am so grateful we have a right to die law in California, one of only 10 states, and it was only enacted in 2016. It give me peace of mind to know I am at lease in control of when I have had enough.
Dr. W, rattled off numerous options, but they all have very low response rates. His top suggestion, Pemetrexed, has a 40% response rate in OC if paired with Avastin. This feels like desperately grasping for a miracle. I don't know what to do.