Now that I have many followers who don't know me personally it feel odd leading with my health news, but here it is: a 16 day post-op update. The inguinal lymph node biopsy incision was bigger than expected because the hot node was very deep. Dr. R took out 3 nodes as she was rooting around to find the diseased node. All three extras turned out clean. The hot node was sent off to SEngine in Seattle and is hopefully growing well for the functional profiling. The incision has healed up perfectly, no redness or inflammation.
The surgical sight is great, but I had other weird complications. Last week something near the incision burst internally, a lymph node or a seroma? Sun and Monday I had the worst pain ever. The intense pain is now a very localized painful spot that hurts every time I stand up and walk. Maybe I have a hernia?
My diaphragm was also unhappy, either irritated by tumors or ascites or getting physically stretched. It is basically in a constant state of fluttering twitches for hours at a time. Last Monday I finally decided to go to the ER. It so frustrating to have all my bloodwork and a scan come back looking good. (well, except for the tumors, but they are still small) yet feel so crappy. My heart was racing, blood pressure high and I had great difficulty taking a deep breath due to tightness in my diaphragm. The ER Dr was fabulous, she really listened to my complicated surgical history and symptoms. After getting my vitals stable, she prescribed a muscle relaxant which I have taken twice in the past week when my diaphragm starts getting weird and spasmy. That has helped.
I hate what cancer has done to me, I feel so turned in on myself, so hypochondriacal. I need all my physical and emotional energy for keeping myself fed, toileted, medicated and on a decent sleep schedule. It's a full time job. I have no energy for anything else. It is so depressing. The life I have now is not a life I want to live. I was not expecting such a rough 2 weeks. Trying to be hopeful, but there is still no news on what trial I will start. We are still waiting on tests, some of which I am not sure have even been ordered. I have a telemed appt. with Dr. R at Cedars on Feb 18th. It has been 4 months since recurrence and without a plan I feel completely untethered in a maelstrom.
Want to do something hopeful? Spend 5 minutes and write to your Senator asking them to support the legislations Senators Schumer, Booker and Wyden, who for the first time in history, are bringing legalization to the Senate floor.
So much of the legalization talk is focused on correcting the racial injustice of our drug laws, which is clearly important. And then there is the "it will be a great source of tax revenue" argument. But science always seems to get left out of the legalization discussion. We need to legalize Cannabis because it is healthcare! It seems so indicative of our country that Martha Stewart can launch a CBD pet product but we still can't do basic science on molecules that hold such hope. But this is exactly the kind of cluster **** we create when science does not lead policy.
My next blog post, working title "My life as an illegal guinea pig," will revisit the literature review I posted one year ago. I'll add a few relevant 2020 papers and post my recent blood work. I saw interesting changes in my CBC and metabolic panel on 100mg of THC day vs. 50 vs 0. Yes, it is desperation to draw conclusions, but as long as the DEA is blocking the science I will share my story as accurately and as helpfully as I can. Watch for that next week.