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A month after my mother's passing on Thanksgiving, I noticed a lump on my tongue. After several doctor visits, and a biopsy we found out that I have tongue cancer. For 2 months I fought the insurance system and referrals to get prompt care, during that time my tumor was removed, found to have a high risk factor, then 40 lymph nodes were removed and 2 of them were cancerous, with evidence that it had spread to the tissue around them.
At this point we had to quit our rental home and move to San Francisco for my care at UCSF. Also around this time Covid-19 appeared in San Francisco. They did a PET scan and found that almost all of the cancer beyond microscopic size had been cut out of me, but the microscopic spread required chemo-radiation. the radiation is daily and the chemo is every three weeks. 6 weeks of radiation in total and then 9 weeks of chemo.
They want us to stay in the city till august to get continued testing done after treatment, but we simply cannot afford to do so in any way, we are living off of this gofundme and unfortunately that is hardly enough to make it in San Francisco for an entire summer. Thus far the plan is, so long as there are no complications and I react well to the breadth of treatment, we plan to leave back to Mendocino and try to find somewhere clean and sheltered to live affordably during my most immunocompromised weeks following may 1st. Then return to the city for an MRI six weeks later and then so long as it comes back clean, a pet scan in august. If any of that is not clean, we will have to find a way to move to the city again for regular tests and treatments. This will come at enormous costs
Covid-19 has hiked up the prices of a lot of things in the city, air bnbs are multiple thousands of dollars per month, rentals the same. hotels can’t rent to people, and UCSF can off no housing assistance whatsoever after radiation treatment is finished regardless of circumstance.
A big worry here is that my wife and I live three hours from the closest ENT/oncologist, and 4 hours from UCSF when we are home in Mendo, Therapy will be crucial, and speech therapy will be a must--which are 3 hour long drives away as well, for what our insurance takes.
It looks like because of a combination of cost and hasty accessibility to healthcare we will have to move back to the east coast after I’m in remission because young cancer requires a lot of very frequent aftercare to ensure it does not return. Since there isn't sufficient medical access in rural Northern California to deal with the aftercare in a prompt, affordable, and reasonable way. This is heartbreaking because my little town has been the most supportive and loving and safe place I’ve ever been and I love it with all my heart. It truly is home.
I haven’t been able to work my job since January, and neither has Claire, I signed up for disability and unemployment but I’m being given the runaround and the whole nation just signed up around the same time because of Covid. We only have what meager savings we had to start with, and the ever draining gofundme fund, and whatever other donations people have been kind enough to give.
I normally am not one to ask for help in such a public way, but I don't know what else to do in this situation. I'm desperate, and scared, and am trying to remain positive, but my fiance and I both might run out of money trying to battle this by ourselves.
If you want to know more, this is my blog
https://www.mytonguetwister.com
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