Well, a lot has happened in the past two months. I was going to visit my own blog to skim my last few posts and see what information I’ve left you with so far, so I know what updates to give. But alas, I didn’t “feel like” reading the previous entries, and when I saw the date of the last post I felt really bad. People [lovingly] hassle me all the time about getting an update posted, and so here I sit: determined to complete a new entry, and give as full an update as possible without rehashing two whole months’ worth of unnecessary details.
I’ll start with the good news: My kidneys are in tact. Their function is 100% back to normal. The lesions covering my brain have disappeared somewhat. Dr. Good-Hair told me near the end of my hospital stay that they may never shrink or disappear, but that the best we might expect is they would calcify and turn into scars. However…[drum roll]...my July brain MRI showed 10% fewer lesions and 20-30% shrinkage of the remaining lesions. (God: 1, Western Medicine: 0)
In other good news, my blood pressure has finally returned to normal – as in, like, a week ago – after several months of hypertension brought on by the drugs. Also, the pituitary MRI in July showed far less swelling, and the tumor that previously appeared there is no longer. As Dr. Fabulous said on Monday, “It’s working!” I’m guessing he meant all the nasty toxic drugs, but I know they got a big boost from prayers to a faithful God and a strict antifungal diet (it’s even worse than it sounds; I’ll get to that in a moment too).
The bad news probably doesn’t sound as bad as it feels. As I’ve mentioned, there’s a drug I have to take daily for 12 months (3 down, 9 to go). It’s two nasty-tasting pills that I take in the morning, and…wait for it…wait for it…I’m allergic to them! (I know, right?) This is where I get to the part about wanting to claw my eyes out if I stare at a computer screen (or TV screen, or iPhone screen, or movie screen, or…you get the idea) for too long. The drug is fluconazole, and the reaction it causes in my body is a feeling I would equate to severe sunburn on my eyeballs, lips, and face.
Basically, my lips stay chapped at all times. My face feels like my epidermis has been completely ripped off to expose my dermis any time I cleanse, moisturize, or apply cosmetics. I also had really bad peeling and blistering on other areas of my body after being waxed (something I have done regularly for more than a decade). And my eyes…just...wow. It feels like there's a searing, blistering sunburn across my corneas 24/7.
I feel it when I wake up, I feel it when I drive to the doctor’s office, I feel it when I'm talking to the cashier at the grocery store, I feel it when I lie down in bed, and I feel it in my sleep. It is unceasing, unrelenting. I’m not sure I could describe how exhausting it is to feel that feeling so constantly. Something about feeling my eyes so dry and stinging tells my mind that I am tired (I’m guessing so that I’ll shut my eyelids), so I just constantly feel beat. Of course, the strain of viewing a computer or TV screen, etc compounds the problem, and I am just not able to do it for lengthy periods without feeling physically and mentally destroyed. If that sounds a little melodramatic, I can assure you it’s not. I don’t want to feel this way, I want to be better. I want to be 100%. Like…now.
And because I’m inpatient and used to being stronger than I am, I tend to unintentionally push myself beyond my current capacities, which serves only to set me back. I won’t get off on a tangent about that concept at the moment. Let’s get back to the updates:
There’s other “bad” news. Although my hemoglobins jumped up a bit after the blood transfusions, they fell severely once the transfused blood had been eaten up by my system. I am severely anemic. I’ll see my hematologist again in a little more than a month, and if my own efforts (nutrition + exercise + continued physical recovery) haven’t boosted my red cell count enough by then, we will consider iron transfusions and/or bone marrow testing (um, no thank you), most likely followed by injections of a bone marrow booster (again, rather not).
Additionally, my hormones and thyroid levels are all jacked up. [NOTE: This is the part where males want to skip down a paragraph or two if they aren’t comfortable reading about women’s health issues – the monthly kind, in particular.] I have had my period every other week since early May (wooo-hooooo - not). My new OB/GYN – let’s call him Dr. Doogie-Howser – remarked when he found out I’d been diagnosed with crypto and treated with ampho, “So, you’ve died and come back to life again.” Yeah, a few times.
So Dr. Doogie says my body is most likely in deep shock over the trauma its been put through, and my ovaries may have simply failed. (Good times.) The lab workup he ordered showed my thyroid TSH level at .01 (normal range is 0.5 - 4.5). No, that is unfortunately not a typo.
So a daily dose of Claritin has ever so slightly curbed the reactions to the fluconazole (not quite enough to keep me from wanting to claw my eyes out, but at least enough to keep me from wanting to end it all), and I’m seeing a dermatologist tomorrow to help get a handle on what is going on with my skin since I left the hospital. I’m working with Dr. Dad-Jokes and Doogie on the hormonal stuff, still seeing the neurological opthalmologist about my eyes, etc, etc.
As one might imagine, I am super super weak, and easily fatigued. Dr. Dad-Jokes told me not to ever get down on myself about it (how did he know?) because, as he said, Amphotericin is “a horrendous, horrendous drug.” He says it’s arguably harsher than chemo, and two visits ago (I seem him a lot) he reminded me not to underestimate the “tremendous physical and emotional trauma” of what I’ve been through.
I try not to. I honestly do. But when you’re used to being active (or simply capable), it’s a hard row to hoe being so physically weak. As of late, I will burst into tears spontaneously for a few different reasons. Sometimes it’s because I can’t do something I used to be able to; sometimes it’s because I’m frustrated with the mental fog and confusion I still deal with on a daily basis, or the constant physical and emotional fatigue. But sometimes it’s because I am just so thankful to be alive. Sometimes I’m just so thankful to not be in that hospital bed any more, hooked up to all those machines. Sometimes it’s because I realize I could have dropped dead at any moment, and there’s a whole series of events which came together as an intricate plan of God to save my life. It’s a fragile, fragile life, my friends…and for whatever reason, I am blessed to be given the opportunity to keep living mine.
When people who know I was in the hospital see me for the first time, or when people I’ve just met find out what I’ve been going through, they tend to say things like, “You look great! You don’t look sick at all.” I’m glad I don’t “look” sick, I really am. I’m glad that, although on par with chemo, ampho doesn’t make all your hair fall out, thereby alerting the world to your predicament. That is an additional layer of experience I am blessed to not have to cope with as I navigate the disease and recovery process.
But it’s also a two-edged sword. I’ve experienced tremendous healing, but I’m not whole yet. I am still not able to manage daily life completely on my own, so I am grateful to have some amazing support as I continue to recover. I’m not well yet. I’ve got a lot of strength to rebuild, and a lot of overcoming to do. I know people mean what they say as a compliment, or perhaps they are just being candid and are surprised I don’t look like I’m on death’s door. But in a way it feels diminishing to my experience. I still need support...and I’m just throwing that out there to whomever will catch it.
So, the photo up top is of what is shaping up to be my most-worn accessory these days, as I feel I am constantly undergoing blood draws (not as constantly as during my hospital stay, thank God). The photo below is a screencap of my iPhone calendar. Almost every single dot on the calendar represents one or more medical appointments. The point being, despite not "looking" sick (and trying my best to keep living my life), this is not fun. This is not over, and I still covet your prayers.
I know I said I’d get to the diet stuff, but at this point I'll have to save those details for the next entry (I’m sure no one wants to read any more right now than I want to write). I will say that due to the illness and the diet and who-knows-what, I am 18 lbs lighter than I was a year ago, which is not where I want to be. I am eager to rebuild my physical strength, and I am having a very rough go of it. I'm doing my best to heed the words of my doctors and my fitness instructors and do what is right for my body and my mind at this time. All prayers welcomed.
Love...
Molly