Four out of five granulocytes transfusions completed

 First off, thanks to all of you who reached out over the last few days, but I didn't reply to at all. I was barely able to look at my phone much of the time (but I'll get to that), but I read them all in bits.

Today during my MRI (I'll get to that, too), I tried to get through it by writing my next blog post in my head. And then I got back to my room and was visiting by the doctor on rounds this week (Dr. Michaelis), who is wonderful, but told me something. She told me that she knew that all of this stuff with the granulocytes was extremely stressful and that it hits at the core of our "fight or flight" response. But she needed me to stop obsessing (that's not what she said) about everything about this treatment--counting and self-rationing meds, worrying about fevers, etc. And she said that I should trust that my team is on top of things and they will let me know when they need my input. She also said that I am, despite these big set-backs, a very healthy person (my heart, lungs, kidney function, etc.) and that the granulocyte transfusions seem to be working. I should trust in the process. Also, I should use the meds that are available to me and not suffer.

So with that being said, I'll work back to my difficult couple of days. First of all, it was finalized that I would receive a total of five granulocyte transfusions. The first two (Friday, Monday) came from one donor, and the other three (Wednesday, Thursday, Friday) will be from a different donor. Each has had an expected arrive time, and they've all been wrong. :) It just makes it a little hard to plan things like other IV meds when they're expected at 3:00 but don't arrive till 5:30.

I described in detail the Friday infusion. The others (so far) have not been that intense, but have been more "classic" granulocyte transfusion reactions. For me, that means high fevers and rigors. I've gotten enough pre-meds (after the first two times, they added a steroid) that the actual infusion goes fine. But afterwards it's a mess of fever-med-fever-med cycling. Every day we learn a little more and are better able to deal with it, but it has left me with days where I'm either feverish and really uncomfortable, waiting for the next dose of meds, or I'm doped up because I just took meds. So I've been out of contact quite a bit of that time. I will probably be mostly out of contact the next few days, too, as this all works through my body. But I am hopeful that it is working, and grateful for the medications that allow me to handle it all.

Last bit on the MRI: I woke up Saturday with a very sensitive spot on my left ankle where it meets my foot. It hurt to even wear socks! I mentioned it on rounds, and it came up again the next day. So to "rule out that the fusarium has impacted the bone," I got an x-ray of that ankle. It didn't show anything definite, and had some comments about possible previous trauma (I'd sprained it before), but I wasn't worried. Then yesterday the who thing was again sensitive, but the area was reddish and warm to the touch. Thus the MRI. I don't have results from that yet.Essentially I'm just hanging in here, taking it one day at a time. I'm trying really hard to relax and just get through. I've been using some meditation and some essential oils. And I'm also really happy that tomorrow is my last one of these. :)

One granulocyte infusion done!

Whew...

I was told earlier in the day that my donated granulocytes would be infused about 8:00 pm on Friday. Visiting hours end at 8:00 pm, but I was worried about how this might go so I asked Greg to stay, at least for the first fifteen minutes. Luckily our nurse was willing to ignore that he was in the room.

I needed to receive Benadryl and Tylenol before the transfusion to minimize a reaction to receiving blood products from someone who is not me. Granulocytes are much more likely to cause a reaction than either platelets or red blood cells, and I already had one reaction to platelets, so that made sense. My nurse said she preferred to wait for the product to be on the floor before giving me my pre-meds, because blood products are often late. In addition, granulocytes have the shortest life after being harvested of any of the blood products, so I knew we had to get them in ASAP. The infusion instructions said to infuse over 2-4 hours. The slower the infusion, the lesser chance of reaction, but of course the longer time of the cells not in my body working, but potentially dying in the bag. I negotiated with my nurse and we agreed on a three hour infusion.

They weren't here at 7:30. Or 8:00. My nurse was calling over and over to see when they'd arrive. They had to be couriered from the donation site (not sure where) and then irradiated at the Froedtert Versiti, and then they'd be delivered to the floor. My nurse was also worried about time and discussed with Versiti that when they arrived on the Froedtert/MCW campus, they'd call her and she'd start the pre-meds. 

I was getting more and more nervous and worried about this life-saving donation being completely useless if it was too late. We waited. Finally about 9:15 (Greg was still here), my nurse heard from Versiti that they had the donation and were treating it. I got pre-medicated. But the donation didn't arrive in half an hour. My nurse checked and said half an hour before transfusion is the minimum, so I'd still be okay. We waited. Greg and I were both falling asleep. And they they arrived at about 11:00. Unfortunately they expired at 1:10 am, so they had to be infused over the shortest time (two hours).

Greg waited and the nurse stayed in my room for fifteen minutes to monitor my vitals and make sure I didn't have any classic reactions. I didn't feel anything. I was just tired. The fifteen minutes were up, and  Greg and my nurse both left. I settled in to do some visualization of the cells traveling to each of my fungal spots and working their magic. (By the way, if you haven't watched Cells At Work, it's all really good, but the neutrophil animations are especially accurate and relevant--just know that I was given a TON of neutrophils so it was even more chaos.)

Not even fifteen minutes after the nurse and Greg left, my nose started running like a faucet. Then I was sneezing like crazy. At the same time, the stye in my left eye was throbbing and swelling so much that I couldn't open my left eye. As that continued (I had to find another box of Puffs Plus), the entire front of my face was hurting. My upper teeth ached so bad that I had to remove my night mouth guard. Still more sneezing and nose pouring out stuff. My nurse checked on me and asked if there was anything she could do for me. I didn't know what that would even be, and I certainly didn't want to stop the infusion (or even pause it, since we had no wiggle room on the expiration time). I told her I wasn't having trouble breathing or itching or any other typical reaction. I wondered if it was really the neutrophils working that quickly.

Neutrophils are the most abundant white blood cell (in healthy people). Unlike the branch of the immune system that has memory to prior exposures and makes specific antibodies to remember specific exposures (thus the science behind an immunization--which takes awhile to take effect), the granulocytes (neutrophils, basophils, eosinophils) are the immediate response. They are non-specific, so if something that is foreign enters, they hit it right away. When I had mucositis following my stem cell transplant, I only needed a few thousand neutrophils to show up before I started feeling better. In fact, I felt better even before they were measurable in my blood. But remember this transfusion was loaded with neutrophils.

So they flooded every part of my body that had something foreign present. Thus the sinuses (I'm assuming that there was/is fungus in there), my eye stye, maybe the random bacteria in my gums since I haven't had my teeth cleaned in so long? And my fungal skin lesions. Every single one of them started to throb. I'd been told I had four spots on my back, but couldn't see them. I felt them. I felt it in my biopsy site, where my first spot appeared, on my upper lip, and several on the soles of my feet. It was excruciating! I tried to visualize over the pain. I felt that this HAD to mean that this treatment was working and doing exactly what it should. I made it through the two hour infusion. But the pain didn't go away. In fact, about an hour after the infusion completed, it got worse. (My Tylenol had worn off). I couldn't open my eyes (throbbing stye plus photosensitivity) but actually asked the nurse for help with my pain. I didn't think I could take Tylenol again, and so she suggested oxycodone. I hate opioids with a passion, but I remembered how they helped me get through four miserable nights with mucositis and that I didn't get addicted. I agreed. But the doctors on call wanted to use Tylenol instead. Finally, after not napping all day Friday, and staying up through the infusion and aftermath, sometime between 3:00 and 4:00 am, I fell asleep.

When I woke up this morning the throbbing in my sinuses, eye and teeth was gone. As soon as the morning Tylenol wore off, the pain in the fungal skin spots returned, in addition to "flu-like symptoms" including chills and body aches. I needed more sleep. I took more Tylenol and slept more. When I was due for my next Tylenol dose, it had to be delayed due to taking Tylenol before the anti-fungal. So I hung out in fetal position and made it through. I am happy that the Tylenol seems to be doing the trick.

But how amazingly cool is this all? To actually FEEL the attack of the neutrophils all over my body? I talked to Dr. Swanson about it to make sure I wasn't over-simplifying things and she said it made sense. Furthermore, she examined my spots and showed me the proof. The flat marks now had true heads, filled with pus, which is the dead neutrophils after their work is done.

I am in awe--again of my donor who must have been at Versiti much longer than they'd expected, and will be in the future. But I'm also just blown away by the human body and how, when it works, it works!

I don't think this has taken care of everything, but it's made a good start. And I have to say that I'm also really very happy that I don't have to do it again tonight already. I'm hoping for a few good night's sleep and maybe decreasing pain without medication. And then I'll be ready to do it all over again on Monday (and Tuesday and Thursday, apparently). Thank you, amazing donor!

 

Baby steps up

Not much has changed since yesterday, and a few little things have been added--namely I also have a bacterial (strep) infection in my blood which has caused fevers today. But I got so much "good" news today that I wanted to share.

All tests looking for fungal infections other places in my body have shown no sign of fungal infection! That includes:

Sinus CT

Echocardiogram

Chest CT

Abdominal CT

Third (and final) nasal scoping

It doesn't mean that there isn't more Fusarium somewhere, but there doesn't appear to be any obvious hidden site. That means less to clear when and if I get functioning neutrophils, which is good.

But the biggest news is that during rounds I was told that they have secured a donor to do a granulocyte transfusion! I don't know many details, and they are very rarely done, so the nurses and many of the APPs haven't seen one, but theoretically at least (since I haven't heard anything definitive), I will start receiving what is essentially a "neutrophil transplant" tomorrow. As mentioned earlier, they aren't always effective, and there can be icky side effects, but this offers me a chance to fight off the fungal infection and allow my counts to recover. 

This is possible because someone matched me, was contacted by Versiti, and agreed to come in today to receive a neupogen shot and steroids, then to return each of the next three days to donate their granulocytes (similar to a platelet donation or double reds where needles are in both arms and the blood cycles through a machine to separate parts out). Wow. They received a call today with a 4-day commitment and agreed to it. I am blown away.

I'll try to share more details as I know them, and since I haven't actually heard a fully laid-out plan, I guess I'll believe it when I see it, but I am excited. 

And thank you all for your Facebook replies, blog comments, personal messages and texts yesterday. I cried a lot last night, but they were happy tears as I reminisced with so many of you. Thank you for such a wonderful gift. And thanks to those who have driven past and waved to me in the window. Today my visitors were announced by the roar of two Harleys. I told the ID doctor that was my cue and I had to get to the window. So wonderful to see your faces, even from far away. 

I continue to feel so unbelievably surrounded by love. Thank you for the best feeling, as I drift off to sleep, still visualizing my new marrow making neutrophils.

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.