Updates, Tears, and Other Annoyances

Howdy folks!

I realize it’s been a while since I updated the blog, but that all changes, because guess what? This is a blog update!

Numbers, Tests, Neutropenia, etc.

I went into Presby yesterday for some routine stuff. Blood work, updates to my test statuses, and transfusions if I needed them. So, here they are:

Numbers – My white blood cells are dropping fast. Down to under 1, didn’t stay to hear about the neutrophils. But they’re definitely below a thousand, so I’m officially in neutropenia again. So I have to be more careful about where and what I eat…but not too big a deal.

My platelets plummeted down from 70somethingk all the way down to 11k. That’s low enough to need a transfusion, which I’ll talk about.

My hemoglobin was still around 10.2. That’s normal and fine that it didn’t drop – your red blood cells live longer than your other cells, so they react slower to changes in production. Last time I needed so many transfusions because I was coming in starting at a 5, whereas now, I came in starting at about 12.

Tests –

Still waiting on the TET2 mutation test (which, if I have that mutation, will push us towards stem cell transplant). Dr. Roboz gets back from an extended vacation on Monday, and I should have the results by then. Still kinda hoping I don’t have TET2, even if it’ll clarify the decision. I’d rather avoid the transplant if I could.

A while ago, we swabbed my dad’s DNA to see if he was a HAPLO match for me. That’s where they take a cord blood sample, and boost it with a bit of a half-match’s stem cells. This reduces the recovery time drastically, which is awesome, because the recovery period is the second most dangerous aspect of the transplant (the first being the just straight up risk of mortality from the transplant itself). I got a call the other day saying that he is, in fact, the correct type of half match to be a candidate for this. So – good news, although a haplo transplant is 3rd on the list of options, in terms of transplants, and 4th on the list of overall options. So it’s basically a fall back / safety valve type scenario. It’s nice to have it, but not so necessary, really.

Also, I got a call from the transplant team. They found a single person who *might* be a living donor match. I didn’t really want to tell anyone, because I think everyone else will kind of overreact, but it’s nice to know it might work. The whole issue is that I have a weird C antigen (they’re looking at up to 10 antigens to find an ideal match). My weird C meant that most people that matched other places did not match the C, and it’s one of the more important ones. So, they found a dude who matches on the C, and I think at least 4 other antigens, because my transplant dude said they ordered high-resolution imaging of the rest of his antigens. This could be a significant change in my feelings towards the transplant…but the likelihood is still pretty slim that its a match. So, cool story, but not getting my hopes up yet. Cross your fingers though!

Baby’s First Out-Patient Transfusion

So, as I mentioned, I had to get some platelets. This is actually the first time I had ever gotten any sort of transfusion outside of my cancer-related hospital visits, so it was interesting.

They have a separate little room with a bunch of reclining chairs in them, and they all have the IV poles all set up and ready. You wait a bunch for the blood bank to type, cross and screen, and send up your bags of blood products. I get my pre-meds (oral benadryll, tyelenol, push’d hydracortizol (sp)). Then you get hooked up, and you hang out. I passed out for a bit, but honestly, the platelets didn’t take that long.

Apparently, though, red blood cells take much longer. Partially because they take longer to infuse, and partially because the more often you get red blood cell transfusions, the more difficult it is for them to actually get you a bag of red blood cells that work. You see, in your blood are antibodies that fight foreign things. Somebody else’s blood, for example.However, each time you get a transfusion, your body makes antibodies against that specific blood that you got. (*Edit* Is that more correct to say?) Not normally a big deal, for most people. However, for cancer patients that require lots and lots of tranfusions…it starts to become a big deal rather quickly. Not like “oh no I can’t get any more tranfusions” big deal. But like…you have to sit around longer and longer for each red blood cell transfusion, as they have to do more type and screens. Unfortunate reality of being stuck in the hospital.

Cool thing, though, is that with my hemoglobin staying nice and high (relatively speaking), there’s a *slight* chance that I make it into recovery without needing a red blood cell transfusion. Slight, but possible. At the very least, I might only need minimal red cell transfusions, as opposed to the first round of chemo, where I needed them almost every other day.

Moving Forward

It’s rapidly approaching decision time. I’ll be meeting with the cord blood transplant specialist over at Sloan soon, and pretty much her info + the TET2 results are going to push me one way or the other, I think.

The main thing that’s terrifying about the transplant procedure is…well…basically the whole thing. There’s a chance you just straight up die from the procedure. Then you sit around the hospital with zero immune system, hoping that your own body doesn’t murder itself. Then you sit around and wait/hope that your new marrow doesn’t murder something important. Then you wait and hope that the donor blood marrow doesn’t give you lasting problems (some of which can be terminal, some of which can just be annoying). If you’re super duper holy-crap-play-the-lotto-right-now lucky, you get through the transplant, and you’re back to normal in a year or so. Recovered and out of the hospital in a month to 6 weeks.

If you’re the opposite lucky, you’re dead.

If you’re somewhere in the middle, you can pretty much just hope that the donor marrow attacks something unimportant, like your skin (rashes), or something easily (relatively speaking) controllable, like your kidney or liver (for which you take steroids and immunosuppressant drugs, which can last a short while…to it can last for the rest of your life).

Man. Fun decisions.

Tears

So I finally got some actual symptoms from the chemo. While I was receiving the high dose Cytarabine, the nurses were giving me steroid eye drops (dexamethasone, if you were curious) to prevent inflamation/irritation in my eyes. When I was discharged, they told me to stop taking them Thursday morning (I was discharged on a Tuesday). I stopped taking them, as directed. Friday, my eyes were kind of annoyed. Felt scratchy…but nothing too bad. I figured it’d go away…wrong.

Saturday, I woke up to ridiculously irritated eyes. Leaking water constantly, blinking made a tear fall down my face. Lids themselves super irritated and painful. Ugh. Just thinking about it is making my eyes water. Needless to say, this is one of the main reasons I didn’t really update the blog over the weekend. Oh, my eyes were also super duper light sensitive, so that made looking at a computer screen or going outside wildly unpleasant.

I called the doctors, a fellow got back to me and confirmed my suspicion – eye drops need to be restarted. So I’ve been taking them every 6 hours since, and it’s been much better. Apparently you’re not supposed to just stop taking the eye drops cold turkey, as the symptoms they help prevent are also the symptoms of withdrawal. So….not really sure how to tell when I’m supposed to stop taking them. Funfun.

Random Other Stuff

I saw The Dark Knight rises and loved it. I know that there were flaws present, but I didn’t really care. I think Nolan capped off his trilogy in the perfect way.

I’ve been cooking a bunch lately, and although I feel like I may have lost my touch a little, it’s been really nice to be able to make food for the family. I’ll be making my famous chili and my mac and cheese soon, so if you want in, contact me in some way and I’ll host a little shindig.

Biking had to take a bit of a back seat. Kept trying to go, and kept getting rained on. With the picc line in my arm, I can’t really get wet, so I had to bail. Additionally, with my platelets so low, I don’t really want to risk biking on my own while my family is at work. So, I have to kind of wait for a bike buddy / chaperone to be around, in case I crash or get super tired or what have you. I’ll probably go on Sunday…providing the weather cooperates a bit more than it has been.

Anyways, that’s the news! Hope everyone out there reading this enjoyed it, and I’ll update again soon.

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14 comments

  1. Geez…now I know why I’ve been looking like I just went through a bad breakup. My eyes have been super irritated too.
    Loved your observations about the bone marrow odyssey. I had transfusions of almost everything you can transfuse. Platelets were down to 8K at one point! Yet, I would think that since I’m an accepting, open person, by body should be accepting and open, which means it should not backtalk with rashes and such in the face of unfamiliar marrow.
    PS…My walks have been spotty. Came home from arsenic on Monday and slept all afternoon.

    1. Yeah, ask your doctor about getting dexamethasone eye drops. They work *fast* to prevent irritation. Only problem is it’s kind of annoying to wean yourself off of. Maybe if you ask them about the specific drug, they’ll have a better one to prescribe to you than one you got off some blog on the internet, haha.

      And I agree! I have always been a welcoming and open person. Why can’t my marrow just play nice with others? hah.

      And don’t feel down about the walks. It’s a long, long trip, not a short little jaunt to a weekend house. Play for the long haul and don’t worry too much about the little bumps along the way. That’s what I try to keep in mind when I don’t hit my goals 🙂

      1. You’re good. I’m sure your body parts will play well with others.

  2. The stem cell transplant is a huge decision. Can you put it off now and have it later if say things don’t go to plan?

    1. Well the issue with holding off on stem cell is that you have to be fully in remission in order to receive it. I’m currently in remission, so I’m a candidate.

      The other option is to get more rounds of consolidation chemo. The risk there, though, is that if you relapse inside of a year from your last round, you have a really, really bad chance at getting a remission.

      So…not really a *good* choice available, to be honest.

      1. Well at least that’s kinda clear, holding off is not an option for you

      2. Well..kinda. Chemo only does have a chance to cure. It’s only about a 10-15% worse chance than the stem cell itself. So, if you take all the other risks involved with stem cell…is it really worth the extra risk?

      3. many of the risks associated with allo stem cell are treatable

  3. Hmm… lets go from high dose (e.g.QID) potent steroid to cold turkey… no, nothing wrong with that plan…/s. Idiot doctors. Grump. Sympathy, though. sp=hydrocortisone. Fingers crossed for the rest of it. Be well, dude.

    1. Thanks Fishie ❤

  4. annmarie · · Reply

    so much to think about !! you do know that you have the lucky lanza gene.Let it come to be yours.
    did you say mac and chesse yum .

    1. I did! I’ll put pictures up somewhere…although I found a recipe for the Chick-Fil-A fried chicken sandwich that I think will have to come first…we’ll see! 🙂

  5. Love your writing!
    My daughter Kayla went through a similiar thing with throat and jaw pain (not as long lasting)
    I am sorry to see you having a tuff time. Pretty soon you will again be frying up some Chicken yuumm! Hope you feel better soon. Take care.

    1. Thanks for the kind words 🙂 I hope your daughter Kayla is doing better, and I’ll have you know, the fried chicken WAS delicious 😀

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