This week is part 2 of meeting all the doctors.
I found out on Monday that I might have some permanent hearing loss (womp womp). As I mentioned in my last post, I started to have some hearing loss last week. At first I thought maybe I had gotten water in my ear when I was showering because everything started to be a little muffled, but then a few days later, it started to ring (tinnitus) and thought maybe I could use some Debrox to clean out my crusty earwax. I went and did a hearing test and it was clear that there is hearing loss in the right ear. The ENT (ear nose throat) specialist is calling it idiopathic sensorineural hearing loss. They don’t really know what causes it, hence the idiopathic, but some hypotheses include viral infection or autoimmunity. This random hearing loss occurs between 5-20 per 100,000 people so it’s a pretty RARE thing to happen, so of course, it happens to me. And unlucky for me, there is a 50/50 chance that my hearing will come back. I’m really trying to be glass half full, but I’m pretty bummed that even when existing, shit happens. I told my mom that if I end up needing hearing aids, then she HAS to wear hers (she’s been in denial for the last decade that she has hearing loss) so maybe there will be some good that comes from this unfortunate situation.
The treatment for this acute hearing loss is typically high dose steroids for 14 days or intratympanic steroid injections (ouch). Both of these are contraindicated with my current treatment plan (transplant would be delayed), and after discussing with my immunology and transplant team, we decided to forgo steroids as I’ll will be on significant other immunosuppressants over the next few weeks. They plan to do an MRI of my brain next week and follow up with another hearing test in a month.
I met with the dentist this week as well to assess my baseline oral health. She said I had nice teeth and air high fived me for still wearing my retainers (woot woot!). I’ve been dealing with oral ulcers the last 2 years since I got very ill and while they have gotten so much better being on steroids and immunosuppressants, it hasn’t healed fully. I still have small cuts on my tongue making it uncomfortable to eat and a large part of my tongue has denuded scar tissue. When I start chemotherapy next week, I will probably start getting ulcers a week or so after so I’m really not looking forward to this again and may need to be on a pain pump for it. TBD but highly likely that this will happen. I’ll also have to maintain good oral health while I’m in the hospital, brushing 4 times a day and flossing. When my counts go super low, I might have to stop flossing because it might make me bleed and I won’t have platelets to stop the bleeding. I’ll also need to look for signs of graft vs host disease (GvHD) which basically means my body rejecting transplant. If I start seeing white streaks or changes in my oral health, it could be a sign of GvHD.
I also had my consult with gynecology this week. I had known that my ovaries would be fried after chemotherapy, but what I didn’t know is that the hormone replacement therapy with estrogen and progesterone would continue until I’m 65. I don’t know why I thought it would stop at some point but 65 seems really far away but it is what it is. GvHD can also happen in my vaginal area too – let’s all hope this doesn’t happen because that does not seem comfortable. I’ll also need a shot of Lupron next week to suppress menses since when I get chemotherapy, all my counts will drop and having a period when you have no way of clotting seems like a bad idea.
I also had to see ophthalmology. One of the tests they do is a Schirmer’s test which is used to determine whether the eye produces enough tears to keep it moist. The test is performed by placing filter paper inside the lower lid of the eye. After 5 minutes, the paper is removed and tested for its moisture content. I’ve already been diagnosed with Sjogren’s syndrome (dry eyes and dry mouth) so I definitely failed the Schirmer’s test (again) but it’s good to have a baseline because you can also get GvHD in your eyes and one of the signs is less tear production.
It’s really all starting to hit me that transplant is happening soon. I think all the conversations every day about what to expect and how terrible it’s going to be is what’s making it feel all so real. I think what’s also making it feel so real is that Gordon had all of his appointments this week too.
Gordon comes with me to a lot of my appointments but it’s never been the other way around because he doesn’t have very many appointments in general. Also, I’ve been generally shocked at what a healthy person experiences because the hospital environment is so much part of my everyday life. For example, Gordon went with me to my hearing test earlier this week. We sat in one of those sound proofing rooms and I asked if he’d been in one before. He responded with “yeah I guess in elementary school when we had to do those hearing tests in those portable booths?” I don’t know why this shocked me but yeah … why would you be getting a random hearing test if YOU’VE NEVER HAD REASON TO DO ONE. In contrast, I go see ENT every 3 months and this is just one of the 10+ specialties I see on a regular basis. Or like today when Gordon had to see anesthesia for his procedure for bone marrow harvest at the end of the month. The NP went through her assessment through each body system. Do you have any immune problems? No. Do you have any pulmonary problems? No. Do you have GI issues? No. Do you take medication? No. Like literally — what is this? NO MEDICATIONS? We were in and out of there FAST. I’m not sure why I was so shocked that this is what a healthy person’s lived experience is like, but I was.
I guess the highlight of this week was our Instapot arrival. Beth’s younger brother, Cal, lives in the area and had one for us to borrow while we’re here (Thanks Cal!). My mom’s planning on making lots of bone broths and stews so Gordon can replenish all the marrow (1.5 LITERS) he’ll be giving me.
