One lack of hygiene with a side of sarcasm, please

I got my hickman inserted yesterday! It hurt like hell, but it's done. I went through quite a lot of morphine in the past 24 hours, and let me tell you, it's barely put a dent in the pain, but what can you do. I'm being admitted the day after tomorrow (!), so I'm sure the pain will be taken care of there in the hospital...not to mention I'll have plenty of other things to worry about there.

SPEAKING OF WHICH.

Today I went in to get my hickman dressing changed.

My BMT coordinator gave me the wrong time to go, so we were already off to a great start, but thankfully the nurse took me on anyhow as it wasn't very busy.

So the nurse starts taking off my dressing, and about halfway through, she starts coughing like crazy. To her credit, leaves the area for a few moments. She comes back a few moments later with watery eyes, breathing heavily, wiping her face.

Now, I'm being admitted the day after tomorrow. I don't think I can state "I cannot get sick now" hard enough, as the smallest type of infection or germs could delay the transplant, which could be disastrous. So, I politely asked the nurse if she could please wear a mask, because for some odd reason she wasn't wearing one--a mask is standard procedure for dressing changes as it is, to say nothing of someone who is coughing, to say nothing of someone who is coughing while changing the dressing of a hickman for someone who is being admitted to transplant in 2 days.

I assure you I was being super polite (funny, just 10 minutes earlier, the receptionist there recognized me when I got there and was telling me how sweet I always am, so THERE...haha! meh), but as soon as I asked the nurse about the mask, she gets immediately defensive and says, and I kid you not, "Do you want to do to this or not? I'm NOT putting on a mask."

When I started to explain how I'm immune-deficient, she cuts me off by snapping "Do I look sick to you?"

I point out that she's just had a coughing fit and--

"WELL I JUST HAD A PEANUT."
She *snapped* that at me like it was the most obvious thing in the world.

A million things go through my head--peanuts are generally not allowed in most public places, and I have an anaphalactic allergy to them (as it says in my chart) so the idea of her coughing peanut dust onto me isn't all that much more appealing than cough germs, to be honest. Also, that aside--how in the world was I supposed to know that she had had a peanut? I'm not psychic. Why couldn't she have just told me, instead of yelling at me and being sarcastic? Before I could answer her absurd comment, she stormed off, yelling at the other nurse to take off my dressing instead. The other nurse who, by the way, was currently working with another patient, so I'd have to wait longer as she was busy.

Oh, and during all of this, my hickman dressing was half-off, leaving me open for infection.

I was so stunned! But for once I decided to say something. I pushed the curtain aside and followed her to the nurses' desk where she was muttering to another nurse. I interrupted her and said, right in front of the other nurses, "Excuse me, you could have just answered my question without all the sarcasm. There was no reason to be so rude. Thank you." And I walked back to the curtain area. I was so shocked at myself, because usually when I'm very angry, my voice will shake, or I'll stumble over my words, or stutter, or all three. But I was so calm! I heard myself speaking calmly and I couldn't believe it was me talking.

Anyway, then the other nurse came, and SHE was very polite, and she finished changing my dressing.

Oh, and she wore a mask.

I called the patient relations number to file a complaint when I got home. Through all I've dealt with at this hospital, I've never bothered to make a complaint. But I felt this warranted one!

In which my common sense peaces out for a bit

Today was a FULL day. So many appointments: dental appointment, lung tests, CT scan, bone marrow test, biopsy. At two different hospitals! Buuuut the hospitals are right across the street from each other (and attached at some point too, though I don't the pathway between these particular two). Mike and I not-so-jokingly refer to the area as the Hospital District, because it's 4 hospitals all next door to each other. I know at least three of them are attached!

Anyway. Fellows from the BMT team performed the biopsy today instead of the oncology team, which was weird. As one of them was walking me to the room, I asked for the liquid codeine the oncology team always gives me before the procedure. She said they didn't have any painkillers; they would just freeze me. Freezing! For a biopsy! Even *with* the codeine it still hurts like hell. For some perspective, in Montreal they gave me morphine via injection and Ativan together to help with the pain pre-biopsy. No painkillers at all? We got to the room then, and I looked in and saw an unfamiliar pair of doctors looking at me, saw all the equipment for the biopsy on the table, and I guess all the stress of the day's events and upcoming transplant just kind of peaked and my brain just noped the fuck out. I said I was going to the bathroom and ran away, and heard one of them yelling at me not to run. I came back and asked if they could get codeine from somewhere else, and I heard myself talking so fast, and then I just slunk to the floor and started rummaging through my purse for my painkillers. It was so weird, because it wasn't like I was making a conscious decision to do any of it---it was like I suddenly went on Crazy Person Autopilot. The two doctors in the room came out to see me, and the head doctor (who was to perform the procedure) was so nice and started talking to me like i was five. Suddenly it dawned on me what I was doing; although sitting on the floor wasn't really striking me as odd (though maybe it should have), it was my refusal to go into the room that I suddenly took note of and made me wonder wtf I was up to. It was so weird. Like--I suddenly realized what I was doing, and suddenly noticed the strange affection the doctor's voice had taken. I managed to snap out of it and enter the room finally, and the head doctor made conversation with me and tried to distract me while we waited for the codeine I found in my bag (just regular codeine tablets--not the liquid kind that oncology gives me) to take effect.

After awhile I had calmed down and they did the bone marrow test and the biopsy. He was actually really good at it and it didn't hurt as much as some of the others. For those keeping score, this is bone marrow #10 if you count the ones done in Montreal, and biopsy #4. Ahhh!

The best (or worst) part of all of this is that the doctor was pretty hot. I felt really bad about freaking out afterward and apologized to him and he just laughed it off. Just as I was thinking I didn't need to be TOO embarrassed as I'd probably never see him again (I had never met him or the other fellow before, as they weren't at my initial BMT consult and weren't on the oncology team), he told me we'd be seeing plenty of each other during my transplant treatment, both on the ward and in the clinic. Well then! It's a good thing I'm fast at overcoming embarrassment, ha. It's a good thing though, because I have someone attractive I can look forward to seeing, so that's a good distraction from all the bad stuff.

Ugh, I wish my mom were here

Going through all this cancer shit without my mom is the worst, the absolute worst. I can't imagine how different it would be if she were here. It was so different the first time I had cancer, with her around to talk to, because there's no one I can talk to the way I can talk to her. And I get really offended when people tell me I can talk to them instead. Who do they think they are? I know they're just trying to help, but it's aggravating, because surely they know how their offer makes no sense.

I  miss her so much it's suffocating. It doesn't hurt to think of childhood memories, because that's already a million billion years ago...I mean, I mourned being a kid when I was a teenager, lol. But what gets to me (at least right now) are memories from my teenage years. It's hard to describe why.

Ugh.

I have to be up for a blood test in less than 6 hours. Double ugh.

And then Wednesday is a whole day of tests--dental appointment, CT scan, pulmonary test, another blood test, bone marrow test, and biopsy.

Triple-quadruple UGH.

My schedule

I got my schedule today for the rest of the month; all the appointments I have to prep for the transplant. It's pretty intense, but thankfully a lot of the appointments are all on the same days, so though the days are long, at least I don't have to go back and forth to the hospital a crazy amount of times. I have a dental appointment, lots of cardiac/lung stuff, and a bone marrow and biopsy coming up, and of course the usual blood tests. Also among all this, I've been seeing a doctor for therapy, and I don't find our sessions very useful at all! The only good thing that's happened so far out of all of it is that she was able to tell me about some anti-nauseants and anti-anxiety meds that may be very useful to me to offset the effects of the chemo and immuno-suppressants I'll be taking for the transplant, but like...in terms of the anxiety and sadness I'm feeling re: all of this, she hasn't been the least bit helpful at all! I kept saying I wanted to do cognitive behavioural therapy for the weeks leading up to the transplant, but it definitely looks like I'm not going to be getting it. Wtf. At least I'm not paying for any of this.

Speaking of moods though, I had a (not-so?) random change of heart this weekend in which I decided I'm just not dying. I put "not-so" in parenthesis with a question mark because I don't know how random it is. I can't recall what exactly prompted this but I think part of it had to do with reading old journal entries and Facebook Memories re: my cancer and deciding well, I've made it this far; I'm not going to be defeated by some stem cells deciding to attack their new host. Hahaha no, fuck that. And just seeing how far I've come---how I beat the odds in the past---why not again?

Also, I think it's just a survival technique. I think my brain was like oh what the fuuuck I can't spend the entire rest of the month just stewing in depression and terror, so fuck this, let's just be DEFIANT about this already.

Well, whether it's defiance or denial, I'm not quite sure, but I'll take this good feeling either way!

So why is a 9/10 so bad?

So, more info about my transplant, as I'm trying to give my friends and family as much info as possible. I figure between here and Facebook, I should have everything more or less covered, heh.

Anyway, so! The transplant. What can go wrong? A lot of things. When you're matched with a donor, you may have a difference of genetic markers on any different level--it could be at the A marker, B marker, C, D, and so forth. A mismatch at the C or D level isn't so serious, but a mismatch at A is.
Guess where my mismatch is?
Yup, A!

So what does this mean? I'm at higher risk for GVHD. GVHD stands for Graft Versus Host Disease, and is pretty much exactly what it sounds like--when the graft (the new stem cells) attack the host. There are 2 kinds of GVHD; chronic and acute.
Acute is the more dangerous one, and can appear anytime after your transplant--anytime from within the first month to any point later in life! That being said, the most common time for acute GVHD to occur is within the first year, especially within the first 3 months (and most commonly the first month). Usually when it happens, the new stem cells attack one of these organs: the liver, the gut, or the skin. If caught fast enough, it's possible to treat GVHD with steroids. But my doctor explained there are cases where patients don't always respond to the steroids, and in those cases, GVHD is often fatal. Acute GVHD is one point where I am at high risk, because of the A-marker mismatch.

Graft Failure (when the stem cells all die and the transplant is a failure) is another possibility, but IIRC, not as big an issue as the extremely common GVHD.

Relapse is still an issue. Just because you get a transplant doesn't mean your cancer is cured. It HOPEFULLY is, but it doesn't guarantee you a free pass.

Secondary cancer (a new, different type of cancer!) is still another possibility.

So these are some of the complications of bone marrow transplants. The big one, though, is GVHD as it's so common anyway, and I'm at high risk for the "dangerous version". That being said, it's good to have *some* GVHD, as strange as that may sound, because having *no* GVHD at all could mean that your new stem cells are weak, and would not be able to handle a relapse if one were to occur. So my doctor explained that they try to aim for a little bit of GVHD with immunosuppresants; they want there to be some, but not so much that it kills you. It sounds weird, but it made sense the way he explained it to me. He's way better at explaining things than I am, for a large number of reasons, needless to say. ;)

There's also the chronic GVHD, but I'm going to talk about that one another time because this entry is already getting really long, and the chronic version tends to pop up later in life and not be as life-threatening. I'll write about it for sure, just at another time.

I hope I explained this stuff well! I might have made some mistakes, so sorry for that. I'm bad at explaining stuff in general; add in the fact that it's well past 2:30 in the morning and I've already taking my sleeping pills PLUS I've been forgetting things like crazy lately (yay chemo brain!), who knows how correct I've gotten the info here...hahha. But I try!

The BMT

BMT stands for Bone Marrow Transplant.

While I was admitted for the bad reaction I had from the chemo last time, I had my consultation with the BMT team, as well as attended the BMT class--everyone who's going for a transplant needs to do this.
The class was informative but nothing I didn't already know, as originally a donor match was tried to be found for me before, back in 2013, and the doctor in charge of that was really, brutally honest about all the things that go oh-so-dreadfully wrong with the transplant. These aren't the types of things you ever forget hearing about (and not to mention, I've been re-reading up on the whole BMT thing again all these years later now that I know I need one for sure), so really, not much I heard in the class was news to me.

What sucked was the BMT consultation itself. See, a few weeks ago (the day I was discharged from my second induction, actually), I was told that not one, but TWO donor matches were found for me. I was so shocked that they were found so quickly, because when they tried to find one back in 2013, it took them over a year to find any match at all, and when they did, it was only a 8/10* match; too risky, so they decided not to go with it (especially as I had already been in remission for so long, so the risks outweighed the benefits at that point). Well, now they had found me two matches in just a few months' time, and they were both 9/10s. I was pretty damn excited (needless to say), especially since this time it's CRUCIAL I get the transplant done.

Fastforward to a few weeks later, when we have the consultation, and the doctor tells me that the odds are pretty much against me here--that my donor matches aren't so good. I was pretty shocked to hear that (to put it mildly). Now, I know a 9/10 isn't fantastic--I know even with a 10/10, there are a TON of risks involved and there's no guarantee things will work out, so a 9/10 is even less likely to work in the patient's favour--but to say the matches weren't that great? Really?
He went on to tell me that an important antigen-marker was missing--with BOTH donors. It was my choice if I wanted to wait around for them to see if they could find a better match, but he highly recommended against doing that, as he had no idea how long that would take, and in the meantime, I could relapse again. My chances of relapsing again are high (as it's already happened once), and if I do relapse again, it would be disastrous for a number of reasons, so it's much better to take the chance and go with one of the not-so-good donors we have (he said he's choosing the younger one).

I don't have the date for my transplant yet, but in the meantime I have to undergo and pass like, a thousand different kind of physical tests. Oh, and probably go for MORE consolidation chemotherapy, so that I don't relapse in the meantime. What fun!

===
*The matches (out of 10) are how many antigen-markers are the same as yours...or something like that. I don't quite understand it myself. My doctor explained to me quite well, illustrating it on paper, but I can't remember anymore. It's some complicated DNA shit.

Irony!

Oh, the irony of my last post (written almost a month ago)!
OK, so a lot of things happened in the following days of me writing that post:

1. I found out I'm in remission! WOHOOO! Super SUPER important, if I want a transplant. (In other words: super SUPER important, if I want to live.)

2. I started consolidation chemotherapy. Meant to be done as an out-patient. I go home afterward.

3. Yeah, MEANT to be done at home. Notice the verb tense being used there. I had (yet again! Surprise surprise!) another bad reaction to the chemo (the worst so far) and ended up back in the hospital again.

I thought I'd only be admitted for a few days, til they could finish up the chemo and observe me, but I ended up getting stuck there for THREE FREAKIN' WEEKS. I had a couple of complications but they had all cleared up by the second week, so I was ready go home, but nope, got stuck there because my doctor wanted to keep me there while my counts were low, which made no sense because my counts would have been low at home anyway had I done the chemo at home as an out-patient, like originally planned! Arghhh! Toward the end I had to beg her like crazy to let me go.

As if that wasn't bad enough, I was put in isolation during that stay (yay!), but then they ran out of isolation rooms so they put me and another patient who was in isolation together. Yes, that's right, shared isolation. It was so fucked up. It was only for the last week, but that was messed-up enough, to put it mildly.

Anyway, I'm home now, and have been oddly feeling under the weather since I got home, despite my tests showing that pretty much all seems well when I go in for my many, many clinics. I've been trying to give my consent for the transplant to go ahead, but trying to communicate with the transplant team has been like pulling teeth. I have a consultation with them on Wednesday though, so hopefully that will get things into gear.

Ah, the transplant team! That's true. I didn't get to really write about that, because my initial consultations happened while I was admitted for my bad reaction to the consolidation chemo. OK, I will write about that in my next entry and explain everything.