And then it all comes crashing down

I was feeling pretty good mentally after the weekend and making it through all steps in the clinical trial. I was growing tired of my hospital stay--the food, the boring lap-walking, being mostly stuck in a single room. But I did have this strange red spot on my forearm that hadn't been much of anything, but my hospital bracelet poked it constantly and it was getting irritated, so I told my nurse about it. She decided it was worth mentioning to the doctor, and that's how I won myself another punch biopsy from Dermatology. Dr. Carlson didn't think it was necessarily a concern, but it looked different from the earlier lesions I'd had (they were flaky and peely but not painful), and then we started looking elsewhere on my body and found at least half a dozen of them. I remembered that I had actually entered the hospital with a similar spot on my left thumb, which was unique because it had a sort of "head" on it, and I didn't remember bumping it anywhere. I asked Dr. Carlson what it could be and she said it could be another generic "dermatitis," it could be something called Sweet's Syndrome, but what they wanted to rule out, which would be very dangerous, was a fungal infection. I stopped complaining about needing another invasive procedure because my friend Kelly's son Logan died from a fungal infection after his bone marrow transplant. I definitely wanted to rule that out.

Tuesday morning the Dermatologist popped in to say they didn't have news yet, but they were thinking it was Sweet's Syndrome.

Tuesday afternoon two dermatologists came in my room and as they were talking to me, Dr. Carlson came in. Unfortunately, the biopsy showed a fungal infection. They don't know exactly which, but that it is a "septate hyphae" fungi, likely either Aspergillis or Fusarium. They explained that they'd contacted Infectious Disease, who would meet with me to explain some things.

I'm not going to mince words. This is really, really bad. You can try to prevent fungal infections with anti-fungals (I was on many, but had to go off for two weeks to protect my liver), but you cannot CURE a fungal infection with them. The ONLY way to cure this is to have neutrophils to fight it. And my clinical trial has a known prolonged recovery time--meaning at least three weeks and likely more since I'm on the step-up dose. Anti-fungals will probably not be able to hold back the infection that long. The likelihood of my body producing neutrophils in time is slim. 

This is very possibly how my life will end.

Apparently a fungal infection in a severely immunocompromised person is a Big Deal, as very quickly I had numerous specialists in my room, back-to-back.

Almost immediately after, Infectious Disease came to see me. They are continuing the Voriconazole which I'd resumed taking when my liver function improved from the Myelotarg, but they also added an IV anti-fungal called Amphotericin-B. I will receive that once daily, and it's side effects are chills and rigors. They pre-medicate with Tylenol and Benedryl.

The optometrist did a full eye exam in the room. My eyes have been very sensitive to light from the cytarabine, plus I have eyelid swelling that started Friday. When he dilated my eyes and then shone the bright light in to look at the back of my eye? That was excruciating! And my eyes stayed dilated and extremely photosensitive until today. Ugh. He said my vision is normal--maybe needing a slightly stronger prescription in the right eye--and the thing on my left eyelid is a stye. (Now I just heard that ophthalmology is coming back to look at my eyes again. I will be again be dilated and not able to write, so I'm just going to hit publish. I don't know that I'll be able to view screens any more today.)

Echo came into the room and did ANOTHER echocardiogram to check for fungal growth on my heart valves.

Ear, Nose & Throat (ENT) were next. They looked in my ears and at my throat and then they stuck a camera in my nasal cavity toward (into?) my sinuses. This, too, was really, really, really awful. The ENT actually wanted to go back in the right side because she "saw something concerning," so I had three of these.

Then Infectious Disease came back in and talked more about Fusarium. He's only had one other patient all year infected with it. He had AML. He died. (I wanted to know.)

Then I went down for another CT scan of my sinuses to see if they have worsened.

I started the Amphotericin, and the pre-meds worked. However, when they wore off, my temp rose to 101, which delayed my receipt of platelets and won me more blood cultures!

This morning I was woken up by ENT to scope my nose again. Still really bad. And I just learned that they're going to do it again tomorrow morning. They're looking for changes indicating fungal growth, and if they find them, I get a trip to the OR so they can scrape it out of my sinuses.

I then had several visits from "the team" (Dr. Carlson and her PAs, med students). A plan of sorts emerged, although everything still depends on so much that we don't know yet.

1. Infectious Disease stopped in to let me know that the culture shows that it is, in fact, Fusarium. 

2. I had a chest and abdomen CT scan today to see if there is any sign of a localized fungal infection in either of those. I am getting daily nasal scoping to look for progression in the sinuses. 

3. I'm using wetting drops for my eyes, plus two ointments.

4. I'm receiving Neupogen (GCSF) shots daily. These boost neutrophils a day or two before they'd naturally appear. Since we don't know when/if my marrow will recover, I guess it's one more layer of possibly speeding up their appearance.

5. Dr. Carlson is looking into the possibility of a granulocyte infusion. I didn't even know that was a possibility. This website explains it really well. Basically the best match is both blood and HLA matched and it's not guaranteed, and it's got icky side effects. The ID doctor seemed to think that unless I took a turn for the worse and it was truly my last option, waiting for count recovery might be better. I'll let them figure it out.

After all that, I'm just going to say that this sucks. I am so very sad about it all and yet I have not completely given up. I'm just afraid I'm a lot closer to that last goodbye than I'd hoped.