Updated: Apr 1, 2020
The last few weeks have been mentally taxing for me. I’ve felt broken in every possible way. The details are deep as fuck and I won’t go there yet...
𝐒𝐮𝐟𝐟𝐢𝐜𝐞 𝐭𝐨 𝐬𝐚𝐲, 𝐈 𝐧𝐞𝐞𝐝𝐞𝐝 𝐠𝐨𝐨𝐝 𝐧𝐞𝐰𝐬 𝐥𝐢𝐤𝐞 𝐈 𝐧𝐞𝐞𝐝 𝐨𝐱𝐲𝐠𝐞𝐧.
𝐅𝐢𝐫𝐬𝐭; 𝐈 𝐟𝐢𝐧𝐚𝐥𝐥𝐲 𝐠𝐨𝐭 𝐦𝐲 𝐜𝐚𝐬𝐭 𝐨𝐟𝐟.
Being immobile is the most soul crushing, depression initiating thing that can happen in my world. Everyone else works out to have a hot bod — then there is me, who has always been driven more so by the improved cognition and improved quality of life. 𝘍𝘶𝘤𝘬 𝘢 𝘩𝘰𝘵 𝘣𝘰𝘥 𝘪𝘧 𝘺𝘰𝘶 𝘧𝘦𝘦𝘭 𝘭𝘪𝘬𝘦 𝘴𝘩𝘪𝘵 𝘢𝘭𝘭 𝘵𝘩𝘦 𝘵𝘪𝘮𝘦.
𝐒𝐞𝐜𝐨𝐧𝐝; 𝐈 𝐡𝐚𝐝 𝐦𝐲 𝐂𝐓 𝐚𝐧𝐝 𝐌𝐑𝐈 𝐲𝐞𝐬𝐭𝐞𝐫𝐝𝐚𝐲.
I’ve been putting it off due to wanting to recover a little prior to beaming myself with radiation, albeit on the lower end, as a direct result of my mad negotiation skills.
I negotiated tactfully about how asinine it is to subject me to a PET with the details of my case. I am not against scans whatsoever and they are needed in some (𝘮𝘢𝘯𝘺) situations. I am however against over exposure. There will be plenty of time in the future to do more invasive scans if the situation warrants it. Right now is not the best time. My new oncologist has been a 𝘨𝘦𝘮 and agreed with my conclusions.
𝐑𝐞𝐬𝐮𝐥𝐭𝐬 —> 𝐧𝐨 𝐦𝐞𝐭𝐚𝐬𝐭𝐚𝐬𝐢𝐬 𝐭𝐨 𝐭𝐡𝐞 𝐨𝐫𝐠𝐚𝐧𝐬. 𝐇𝐚𝐩𝐩𝐲 𝐝𝐚𝐧𝐜𝐞. 𝗪𝐡𝐚𝐭 𝐭𝐡𝐢𝐬 𝐦𝐞𝐚𝐧𝐬 𝐢𝐬 𝐭𝐡𝐚𝐭 𝐲𝐞𝐬, 𝐢𝐭 𝐢𝐬 𝐬𝐭𝐚𝐠𝐞 𝐭𝐡𝐫𝐞𝐞 𝐰𝐢𝐭𝐡 𝐦𝐞𝐭𝐚𝐬𝐭𝐚𝐬𝐢𝐬 𝐭𝐨 𝐭𝐡𝐞 𝐬𝐞𝐧𝐭𝐢𝐧𝐞𝐥 𝐧𝐨𝐝𝐞𝐬, 𝐛𝐮𝐭 𝐝𝐨𝐞𝐬𝐧’𝐭 𝐚𝐩𝐩𝐞𝐚𝐫 𝐭𝐨 𝐛𝐞 𝐚𝐧𝐲𝐰𝐡𝐞𝐫𝐞 𝐞𝐥𝐬𝐞. 𝐅𝐨𝐫 𝐧𝐨𝐰.
Fun fact: many (𝘯𝘰𝘵 𝘢𝘭𝘭) oncologists are unfamiliar with current literature. So if you give a logical argument for why your treatment plan isn’t in your best interest, in light of new solid research, please speak up. This is your fucking life.
You should be able to discuss these things with your medical team. 𝐑𝐞𝐦𝐞𝐦𝐛𝐞𝐫, 𝐭𝐡𝐞𝐲 𝐰𝐨𝐫𝐤 𝐟𝐨𝐫 𝐲𝐨𝐮.
My first oncologist pushed back when I questioned his conclusions and was also clearly not familiar with the new data we have on melanoma.
He showed me a handout y’all when trying to explain his position. I found someone else who was clearly a league ahead of many in the field. My new main squeeze can have an intellectual conversation with me — explain the biochemical responses these medications cause, and how it’s all interlaced with our mutations — which shows the depth of his understanding. He knows I prefer the long form answer and explanation for everything. Remember, we train others how to treat us.
I decided against immunotherapy due to it only offering me a 12-13% increase in reoccurrence free survival.
Not worth it to me with possible autoimmunity and my history. I will keep an eye on various bio-markers with my functional MD’s — while I continue doing CT’s and ultrasounds with my oncologist for the next several years.
𝐈 𝐟𝐞𝐞𝐥 𝐥𝐢𝐤𝐞 𝐈 𝐜𝐚𝐧 𝐛𝐫𝐞𝐚𝐭𝐡𝐞 𝐚𝐠𝐚𝐢𝐧 𝐟𝐫𝐢𝐞𝐧𝐝𝐬.
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