Med VS med

I wrote a really long post on Facebook to update folks on what's new, and since the post was so long, I decided to double-post it here. I don't plan on making that a habit, by the way. It was just such a long post and I remembered how little I've been posting here, so I figured eh, why not, I'll do a copy/paste.

And without further ado!

Super good things: my meds have been switched around, and I no longer spend all day every day nauseous. It's been a good week or so now.

The less good things: I have infections and some kind of virus I don't quite understand the details of, and that means even more meds and a lot of pain from the infections in the meantime. Also, one of the anti-virals hasn't been working, so I might have to switch meds again, and it may involve a clinical trail. ughhhh. Just so much going on.
I'm currently on 12 medications, many of which I need to take 2-3 times a day. I have whole charts to follow. Sometimes I make mistakes, even with the charts.
It takes me about 15 minutes to take all my morning pills. The coffee percolates during that time, and I usually finish off 1 entire water bottle swallowing the pills.
I have to wash my hands before & after handling certain medications. My hands are raw from all the washing.
As an extra bonus, most of these meds are very hard on the stomach, to say nothing of their combined interactions.


My nurses are so great about it. I'm already thinking about cards to make them and chocolate or wine to send them when all of this is said and done. They're much more pleasant than my doctor. He's nice, but he's all gloom & doom (I appreciate and WANT the honesty, but he's harsh); meanwhile my nurses are like "C'mon Marina, you can do this! I know it's rough. Just gotta hang on for a few months and you'll be done with the meds, OK? You got this!! "
They are so optimistic with me, and NOT in that fake positivity way. They're not asking me to be happy or to find the positive in illness, or to hide my true feelings to make others feel more comfortable. They just want me to pull through the bad parts because they know there's an end to that eventually, and when I get there (and I *will* get there), that's when I get to feel normal again.

And that's when I'll be socializing again and going places and having fun again...

For now though, I'm so happy to be in my own home, my cozy cozy apartment, my kitchenette, my huge lovely bed, and of course to be here with my lovely husband who's always making me laugh, watching old shows, playing Nintendo with me, and cooking me feasts that make wonder "what did I do to deserve this?"
Feasts that make the apartment fill up with WONDERFUL, comforting, delicious scents---so relaxing & inviting.
A complete 180 from the smells of a hospital.
.
I love my home and I'm so, so, so super happy to be here.
We just gotta kick these infections and virus to the curb...scram, you little invaders!

Oh yeah, the transplant!

So like...I make a random update about how I miss working and realize I've never written about the transplant. :P

Well....I had plenty of time to write about it, I just haven't felt like it. I'm so, so, so sick of talking about it. But let's see. I went into the hospital on August 1st and was able to go home after my UV meds at the end of each day until August 6th, the day before my transplant. Then I had to stay at the hospital as an in-patient.

I got the transplant on the 7th, and as far as procedures go, the transplant itself was "anti-climatic" as it was just basically a quick, glorified blood transfusion. But no one warned me how I'd feel afterward--it was awful. I felt totally out of it, like I wasn't even a person. I was totally nauseous, but I feel that word doesn't even come close to cutting it--I'm nauseous from chemo. This was...this was something else. It felt like a hangover x 1,000,000 mixed with the worst bad trip I've ever had times ten. I didn't even feel like a person. I know I said that already, but I can't emphasize enough how awful that feeling was and I wish someone had warned me about that! I couldn't even talk to describe how I felt because I felt so dazed and out of it (in the WORST way; not a fun drugged-up way) and I couldn't even describe to the nurses and doctors how I was feeling so that didn't help matters either, that's for sure.

Thankfully that experience only lasted about 48 hours, but it felt like an eternity. Then I gradually got better as my cells disappeared from the chemo and were replaced with the new cells from the transplant. It's kind of like induction chemo except a lot quicker, because of instead of waiting for your own, cancer-battered cells to come in, you're getting brand new cells growing in! It happened quickly, and I got to go home around day 22, if I recall correctly.

I've been home ever since and going to clinic at the hospital twice a week, and it's been exhausting. I'm immuno-suppressed and will be for 3 months minimum, and I'm on a TON of medication, many of which constantly interact with each other and do all kinds of things to my body, so my BMT (Bone Marrow Transplant) team has to keep switching then around. It's exhausting. The meds' side effects are exhausting. Going back and forth to the hospital is exhausting. Being constantly on the look out (and afraid about) GVHD is exhausting. It's all so exhausting and I'm tired and queasy all the time but I'm so glad to be at home, and that's an understatement.

And I'm so tired of talking about this, but I also know it's important to write it all down. I'll try to write more about it later.

I miss working

omg I miss working at CBC so fucking much. On Facebook, I just scrolled past a video of one of the same parts of the building I used to work in and: OH THE FEELS, as the kids say. 

Ah, I miss working, period. Incidentally, I dreamt last night that I was teaching! When I woke up I was so disappointed it wasn't really happening.

11 more months til I can return to work. I can do it, I know. One day I'll be saying "remember when I was saying 1 year until, 1 year until...? And now we're a year looking back!" It just feels like such a long, long way away right now.

Ah, well. Plenty of time to work on my Japanese in the meantime. My vocabulary & kanji have expanded a crazy amount since January. I'm just gonna continue with that.

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!