Full disclosure: I wrote a diary Monday asking for financial help with a friend in Greensboro, North Carolina, and I'm writing a diary today asking for financial help with me here in Cary/Raleigh, North Carolina. I know it will probably seem that I'm running a con here, but those of you who know me know that I've been dealing with a brain tumor for quite a while now and that I wouldn't ask unless I needed. And often don't talk to people honestly even when I could use a hug or some help.
When I friend asked me a few days to ago write a plea for help a few days ago because she was facing a ginormous healthcare and potential homelessness emergency, for the first time in my life, I had to think about whether to say "YES!!! YES!!! Yes, of course!!" Because I felt so panicked about my situation I didn't think I could do a diary justice to her (and most certainly didn't). But I also knew that her situation is far more dire than mine, and more of an emergency. And that it would do my heart good. So I wrote it just a couple hours before the hospital shuttle came to pick me up to take me to what might have been a lengthy and terrifying hospital stay.
Because the next day I was headed to Duke Hospital for a length testing process to determine whether a brain shunt was doing its job of drawing away cerebral spinal fluid from the base of my skull, where the CSF was putting undue pressure on a small 3.55mm tumor at the of my skull.
My health has been declining this year, with six hospitalizations and a "forced state of impaired consciousness" to help me heal from a series of bacterial infections that had quickly grown immune to regular antibiotic treatments. So the thinking was that the CSF pressure was creating the tumor to do things it might not ordinarily do. Peer pressure!!
My Japanese neurosurgeon, Dr. Fukushima, who travels around the world treating people with rare and seemingly inoperable tumors oftentimes like the very, very rare tumor and skull construction that I have, has been pessimistic about removing the tumor, because it would require a quick succession of three surgeries in three parts of my body to harvest tissue from my spleen to wrap the sella turcica and keep it from flooding the skull-base with CSF; giving that a day or so to heal; replacing the brain shunt with something that would work a little harder, and then opening up the skull for a 5-8-hour surgery to remove the tumor without damaging the Great Spleen Balloon (Oh, Loooooosy -- you got some 'spleenin' to do!).
He gave me about a 10% of recovering all three surgeries in such a short length of time, considering my compromised immune condition. And unless it becomes a life-or-death situation, this surgeon (who is the world's most highly respected neurosurgeon for this particular constellation of skull-based tumor-with-complications) said it would be the wrong thing to do to put me at that risk. WELL, GOOD NEWS!!
What we learned at a very length hospital visit on Monday was that autoimmune system is still far too wobbly to withstand a three-part/three-body-part series of operations within 3-5 days. Yet at the same time, the increased cerebral spinal fluid pressure (which rendered me blind for a few days in August when it did screwy things to my optic nerve and the part of the brain that interprets visual signals), has not changed the shape or the size of the small tumor.
SO THERE IS NO URGENT NEED TO UNDERGO LIFE-SCARY SURGERY AT THIS TIME!!
*cue the balloons, paper streamers, and champagne!!!
This is something I can live with. Dr. Fukushima will see me again in six months and see how things are going. In the meantime, I'm working with an infectious diseases specialist to get my autoimmune system up and running again. Then --- YEE HAW!!
Now comes the really tough part for me: Asking my dear friends and Kossack sparring partners whether you might chip in just a few bucks for the incidental care I need over the next few weeks. Nothing much is needed, but it's more than I can afford right now:
- a very expensive medication called NuVigil, which combats and excessive sleepiness that derives from the anti-seizure medication I'm taking.
- a new eyeglass lens for my right eye that won't trigger strain caused by optic nerve pressure and damage
- my regular November medications that I wasn't able to pick up from social services or patient-assistance programs
- a new crown for a tooth that was damaged in a bronchoscopy three weeks ago when I had a very bad case of bronchitis and laryngeal candidiasis.
All in all, I'm looking at a need of about $500-750.
If you don't mind using PayPal, you can write me Kim(dot)Yaman@gmail{dot}com.
I'm receiving help from Meals on Wheels, which is a wonderful program! I'm not required to pay full price for the meals, but I send a little soething when I have cash, and will make sure they get some of my tax rebate in the next couple of months.
I also have incredible support Kossack support and from friends who live closer to home.
I understand that we are all strapped this time of year and that many of us are out of work or underjobbed. But it would be a great relief to me to be able to see well and be taking the medication that is going to make it easier for me to report to Dr. Fukushima in the spring that I've taken all my meds and made great strides in getting well so that I can get even weller by having that tumor removed while making him famous!!
If you don't mind using PayPal, you can write me Kim(dot)Yaman@gmail{dot}com.
I am sorry to offer up this ask so soon after a diary asking for assistance for our dear MsWings (who has good news to share as well!), but ... well ... sometimes we have to be honest with our friends and family and let them know what we're facing ---- even when we're facing good news laced with exhortations to wait for every better news later.
Thank you all so much. The Great Orange Satan matters to much to me, and I'm so utterly proud of every comunity member "on the block" here.
Big, big love to all!! Even my shy little tumor Anastasia says hello as she clings tight to her little base-skull womb, afraid to come out. But one day she'll grow, and then it's time for our little birdie to leave the nest!! and what a party THAT will be!!