Well, today’s the day. I’m finally going home after being in the hospital for 3 weeks. There aren’t enough words to explain the whirlwind of emotions I’m feeling as I take another (huge) step towards regular health! I’m not going to lie, as much as it felt like I was stuck in a jail cell (with a phenomenal view), I’m really going to miss the amazing nurses and staff, the fantastic room service, and HEPA-filtered, UV-treated air. But alas, every good thing must come to an end.
My dad got into SF yesterday. He drove more than 17 hours over two days to get here in time to get settled and rested before the big task that lies ahead. Today he (and I) will be getting trained on how to deal with my Hickman, my medication schedule, general infection prevention, and food preparation guidelines. There’s a whopping 3 hours blocked off where an NP (and translator, just to make sure my dad gets everything) will guide us through all the information. I have a few questions like: when will I be well enough to go shopping, in public? (Lord knows I’ve been binge online shopping this whole time). And, how soon can I eat Tartine pastries again? Clearly high priorities. Obv.
I’m super excited to be able to go home, but I carry a good number of reservations about being outside of a closely monitored environment. I share a three-story Edwardian home with 4 other roommates. What happens if I catch something someone brings home? I am still immunocompromised after all, and it’ll take a few months before my immune system is fully up and running. I really want to avoid getting some kind of infection. *LOTS OF PARANOID HAND WASHING*
What happens if I’m not well enough to self-administer my medication? Let’s be real, I’m gonna take care of myself to A) alleviate stress from my dad, and B) gain some sense of independence again. So in the event that I have to rely on my dad to flush my Hickman lines, etc. will he be comfortable enough to do it? (He gets really freaked out about serious medical things pretty easily. Go figure. Half of my gene pool.) I know I shouldn’t sweat the small stuff and I know everything will be great in the end, but I can’t stop the crazy part of my brain from going there. I guess this is just another thing I have to submit myself to and trust will be okay. Patience really isn’t my strong suit.
Guys, the alopecia came in full force yesterday. I hadn’t noticed it until I was rubbing my quickly growing hair and an impressive number of 1/2″ strands were stuck on my hand. Ohhhh did that trigger the crazy Min. I went. to. town. on my head. Rubbing, pulling, tugging, pulling, pulling, pulling, rubbing. I have this crazy idea that the sooner all of the hair falls out, the sooner it’ll come back in. I know that’s not true, but crazy Min is now resident in my head and he can’t be convinced otherwise. Does he think rationally, taking into consideration how long it’ll take the new hair follicle cells to regenerate? Nope. Does he think about how long the chemo treated cells take to die? Nope. He just wants all of the hair gone. Gone, gone, gone.
I must admit, it’s peculiarly addictive pulling the hair out. Sort of like picking at a scab or tugging at a hang nail, but much less painful. Every hour or so my hands will scan my scalp rubbing out as many loose hairs as possible, and then I’ll systematically tug at every single area of my head to extract all of the remaining loose hairs. I’m seriously amazed at how much hair is on my head. It never stops falling out!
I think I’m also OCD about getting all the hair off my head because I’m trying to avoid the patchy scalp look. I know, I know totally vain and purely cosmetic, but if I can avoid it, I want to. Crazy Min be cray.
Oy, this mixed bag of emotions. A roller coaster of mostly highs and a few lows. Mainly excitement, overwhelming gratitude, and gleeful anticipation, with a tinge of anxiety and paranoia. I’m feeling all of the feels!
Today, I had the chance to have a really good conversation with my day nurse, Hannah. She is also a 26 year old Korean American. We
chatted commiserated about being raised by immigrant parents and talked about how so few Koreans register for the bone marrow registry. One of her friends told her that apparently there is strong superstition against sharing marrow which deters people from registering. I think there’s got to be a good amount of fear and lack of education mixed in there, too. Our conversation lead us to talking about setting up a bone marrow registering drive sometime in the near future. It’s not too difficult to coordinate. We talked about where and how we could target asian, specifically Korean, populations since there is such a dire need for more minorities in the registry. Churches were our first target places (Koreans *love* their religion). But also markets, schools, and bars. I volunteered to be a living, breathing example of how volunteering for the registry can save someone’s life. We exchanged information, and I’m super stoked to get this off the ground once I’m well enough.
Another plug: if you haven’t already joined the bone marrow registry, please please please consider it. You don’t need to make any commitments by registering. Even if you do match with someone, you still have to option to decline. At each step of the process, you have control in making your own decision. You can order a kit to be sent to your home here, and all you send is a mouth swab. That’s it! Super simple, super quick, and you could save someone’s life one day! 😀
Day +14. My white blood cell counts are starting to level off, while my hemoglobin and red blood cells continue to decline. I asked my doctor about it and he said that the RBCs are one of the last cell types to bounce back. He also said to expect my WBCs to decline by 50-60% when I leave the hospital, but not to be alarmed. The boosted WBC counts are due to the Neupogen shots I was getting to help stimulate the WBCs. My natural WBC should pick up pretty quickly after that dip. I’m hoping for a speedy recovery while at home, but I’m still playing the long game. Like golf. Which I’m horrible at.