Keep your eye on the prize

I saw my doctor on Friday and he's less concerned about acute GVHD now that I'm almost at the 5-month mark since I got my transplant. 5 months already! When it's January 7th it'll be 5 months, meaning February 7th is 6 months since my transplant, and if all continues to go well, I might be able to go back to eating and going out like a normal person.

I'm so glad and grateful to have made it through the highest risk period for acute GVHD, but needless to say, this doesn't mean I'm out of the woods. Your body can reject the transplant at any point up to a year after you get it. But at the same time, of course it's still good news that I've made it to this point, and it feels wonderful to be here--and that sure is a freakin' understatement!

Other things I still have to worry about include colds, flus, and infections, all of which can be very dangerous to me still. Another thing I fear at the back of my mind is another relapse. It's not like much can be done for me if I relapse again. It would be extremely, extremely bad news indeed. So I try my best not to think about that.

So far, so good--and that's all we need to know, right?

(Ha, imagine it were that easy to keep your mind on the prize?)

That being said, I AM very excited for February. The 6-month point. I wonder if I'll be able to eat what I want then. I wonder if I'll be able to go to restaurants. I wonder if I'll be able to have sushi. I wonder if I'll be able to have alcohol.

It'll be around my birthday, so what perfect timing that would all be, huh?

Arrrghhhhh

If one more person tells me to "try to distract myself from my anxiety with hobbies" I will lose it. I'm so tired of explaining that when you're anxious, creative things are the most difficult things to do. Tonight I decided fuck it, let's get back into my hobbies, and tried playing Breath of the Wild. Forget it. I got stuck at what should be a relatively easy puzzle. The more I tried the more frustrated I got, so I stopped before I got too angry. So I go play piano instead. I can't figure out any new music. That makes sense, because how could I do that with this level of anxiety? No problem. So I try to play a medley of stuff I've always known and have a really, really hard time trying to remember The Land Before Time soundtrack, which makes no sense because I've been playing it on the piano since I was a little girl. I played a few other things and saved my favourite for last--Beethoven's 7th Allegreto--and I can't remember it. All I remember are a few broken parts. I've been playing this *non-stop* since I was in the 10th grade, where did it go? Playing it (and the Land Before Time soundtrack) gives me such a sense of peace. And now I can't even do that?

Not being able to figure out new music is one thing, but not being able to play old favourites is just torture. Not to mention, why is my long-term memory suddenly affected? I'm used to my short-term memory being rubbish these days, but my long-term memory shouldn't be affected like this.

So now I feel positively awful; 10,000x worse than if I had just watched TV all night like I had been doing. So I guess I'm back to being stuck watching TV shows and movies all day. It's just getting so repetitive. I'm tired of being so anxious all the time. It's so exhausting.

Needing some alone time

After having a constant revolving door of (super incredibly lovely) people constantly here, I had a day to myself yesterday. I can't find the words to explain how tired I got from having no alone time for so long. It's tough. Even if the people are awesome, it's draining, both physically and emotionally. I did my best and tried to balance out the constant company by making to sure to always give each other space, watch shows together and be on my phone a lot...but truth be told, that's pretty much all I had energy for anyway! Oh, I'm so very grateful for everyone who came and stayed with me, whether it was for a week (or more!), or just a few hours. So very, very grateful for all my amazing, terrific caregivers indeed, and that is an understatement. But I'm also grateful for alone time. It's just something the body and mind need, right?

I get tired so quickly still. Again, I feel it so hard so both physically and emotionally, but yesterday with all my alone time, I felt intensely physically exhausted in particular. I fried eggs (you know, something a 10-year-old could do), washed the dishes, and wrote one single Christmas card. I also organized some stuff in my purse for an appointment I had today. Well, wouldn't you know it felt like I had run a marathon. I mean, I guess I gotta count all the hand washings in between all those things. Like a hundred times a day. I'm so tired of washing my hands. Oh, and the taking of so many pills. And applying so many creams. Etc, etc. I know it doesn't sound like much, but when you add it all up, all these many, many little things, on top of everything else, when you're already so exhausted...it's a lot. It really gets to you after awhile.

Today I had my OBGYN appointment. She's a specialist for folks who've had bone marrow transplants, so I feel really safe with her. Anyway, so far so good on that front, so that was a very nice reassurance. Tonight I'll have the apartment to myself again so we'll see how that goes. I'm hoping to have enough energy to do some gaming. Breath of the Wild (one of the best things to happen to me in a long time--that's right, I typed one of the best THINGS to happen to me in awhile, not even "one of the best games") is pretty high on my list of ways I hope to spend my time tonight.

Getting there

I've been off immune-suppressants for 13 days now! So far the only signs of GVHD I have is GVHD of the skin; got a pretty huge rash on my face a few weeks ago that looked like I had a chicken pox! My doctor gave me the first line of intervention, which is steroid cream, and that seems to keep it under control. As gross as it looks, I don't mind GVHD of the skin as long as that's where it stays. Just don't go after my organs, and all will be well, alright?

Speaking of which, I need to be super vigilant every day about any little change that may occur in my body. What would just be a normal stomachache for most people could be something very dangerous for me, so I constantly have to be on alert. As such, I'm also constantly in a state of anxiety. It's pretty exhausting (to put it mildly) and I wish I could handle it better. I'm just trying to get used to it but I'm really tired all of the time. I'm seeing a therapist but he isn't very useful, unfortunately.
At least most of my blood tests have been giving good results, so there's that. Lots of ups and downs, to be sure, but mostly things have been good. In fact, my doctor even said that if my next appointment (that's tomorrow!) goes well and if all seems stable,  he might even change my appointments to every two weeks instead of the once-a-week schedule we have going now.

Also! I had my first vaccine last week. So we're already starting with that. Pretty exciting, huh? My first one protects against pneumonia and a bunch of other things I've already forgotten. I still need two follow-up vaccines for this one. In all, it's going to take 2 years to get through all my vaccines. In the meantime, I just gotta really hope that I don't run into any non-vaccinated folks. That would be pretty scary.

The Stage Management of Caring for Another

My doctor has started tapering me off the immune-suppressants as of a few days ago. No changes yet, although I've had some unrelated issues this week that required me to call the nurse-admin/doctor-on-call. Thankfully I've not had to go in to the hospital, and was told to just continue monitoring my symptoms. These types of responses to my call-ins are of a particular relief to me this week, as I have a very dear friend staying with me from out of town right now. As my husband began his latest contract this week, we now have friends staying over to act as caregiver. There needs to be someone here at all times for the next little while just in case something should go wrong or I suddenly need to go to the hospital. Up until now, Mike's been home, but now that he's going back to work, we need other people here instead. Being the amazingly organized stage manager that he is, Mike stage managed the entirety of my caregiving up until early December. By that point, he'll be done his contract for the holidays, and barring any complications, I should be able to take care of myself. He really did stage manage the entire thing though. Keeping track of everybody's schedules, Excel sheets, everything.  This man is something else! He's the best.

Zig-Zags

Everything about recovery is a zig-zag. You don't slowly get better in a straight line evenly, slowly but surely, going up. No, it's all a zig-zag. Things are amazing one day and then not so great the next. A lot can change in 24 hours. Sometimes it feels like I've taken 2 steps forward, then 5 steps back. But I beat cancer twice and got a stem cell transplant and I'm alive so I'll just marvel at that.

My appointment with my BMT doctors went really well this Tuesday; all those virus numbers went down, so hopefully they'll stay dormant. The biggest news was my doctor telling me that in two weeks' time, my hickman line will be removed! (Barring any complications, of course--as it always goes.) I am very excited about this.
He also talked about beginning to slowly taper me off the immune-suppressants. It's a long, tricky, and dangerous process, but also a very important one. Like everything else, it's not a linear process. Lots of trial & error and going back & forth on the dosages. Once I'm off immune-suppressants, my body can start to fight for itself, meaning GREAT things (my immune system will be working once again and life with a properly functioning immune system sounds like such a dream right now!), but it also means scary things, like the fact I'll be at greater risk for GVHD, as if I weren't at high enough risk already. Hopefully my immune system won't wake up and be like "WHO THE FUCK ARE YOU" at my news cells, and we can all get along and live in harmony for many decades to come.

In other medical news, today I saw my cardiologist. Unfortunately my heart has not healed itself from all the damage it took from the chemo back in the spring, so I have to go on some more medication. (Because being on 13 meds right now is just not enough!) Hopefully the side effects won't be too bad. More importantly, hopefully it will treat my heart the way it's supposed to. Kinda scary. I'll try not to dwell on this point because I don't want to and there's not much I can do about it.

Between the heart issues and the fact that my OBGYN figured out I'm in menopause--ohh, did I write about this yet? It doesn't matter than I'm only 38; the transplant and/or the meds I was on for it, or maybe a combo thereof (I can't fucking keep track anymore) apparently sent my still-not-yet-40-year-old body into menopause. So that's really great. So more meds for that. Ohhh boy.
But yeah, between the heart issues, menopause, and the ever-present fears of GVHD and the viruses, it's exhausting. There's not a day that goes by in which I don't feel so incredibly happy and grateful to be chilling at home, eating my husband's delicious cooking and playing video games in our cozy apartment, but I'm not always successful at immersing myself in things deeply enough to distract me from anxiety and sometimes sadness. 

All that said though, the past 4 days in a row I've woken up with energy! It's great! Physically I've had a huge boost suddenly, and I'm really loving it. As No Doubt sang once: "please don't let it go away, this feeling has got to stay!" I like feeling energetic!

CMV and EBV

I'm finding myself on edge most of the time; I'm trying to relax with my favourite things, but it's hard. (I feel like I say that sentence a lot.) It's ups and downs with transplant recovery, but this was to be expected. It's scary though. The constant observing of every little thing my body does, jumping up at every ache and pain, wondering what to call my doctor or and what not to. A lot of GVHD symptoms (or symptoms of serious viruses) include very common, general-type symptoms, as well as being similar to side effects caused by the meds I take, so it's all so confusing and frustrating.

Speaking of virus, still waiting to hear back on the counts for the second virus. The first virus they were concerned about (a couple of weeks ago) is "behaving" and staying at bay,so at least that.

The two viruses I'm talking about are called CMV (Cytomegalovirus) and EBV (Epstein-Barr Virus). Apparently a lot of people have these in their bodies, but they rarely cause problems for healthy people. But if you're immune-suppressed, they can become "live" and cause a lot of problems. For those of us with weakened immune systems, they can be deadly. So it's very important to keep these things under control.

The ups & downs of my hospital clinic visits

Booo. Today's clinic visit wasn't as happy as some of the others; my virus counts are back up (a different virus from last time though), I have possible signs of a more dangerous type of GVHD, and I've now got new meds added to my roster. *long sigh through nose* Hopefully the virus counts go down, and hopefully the meds I'm starting will help, and hopefully these symptoms turn out not to be GVHD after all, because these could turn into some really serious issues--not to mention that trying to treat both at the same time is borderline contradictory.

It's complicated, but basically--in order to combat the virus, it would be best if I were being weaned off the immuno-suppressants so that my body can fight. But doing that could leave the door wide open for GVHD to come in with full force. Staying on immuno-suppresants is our best bet at keeping the GVHD at bay, but that means my body can't fight off a virus; we have to put all our hope on the meds. So you can see the dilemma here. As my doctor said, it's a lot of balancing back and forth. That's what a lot of post-transplant has felt like so far--a lot of balancing back and forth with meds and treatment. It never ends. I feel like I'm in good hands, though.

Anyway, on Tuesday we'll look at my latest counts re: the virus, and we'll see how I'm feeling re: the GVHD symptoms and see if the new meds help with that. Hopefully these issues will go away and I won't have bigger problems to deal with this time next week.

Yay, long weekend. (haha, just kidding about the "yay".)

"The tyranny of prescriptive joy"

Unless you know firsthand what it's like to have your own blood cells turn on you and try to kill you, and know what it's like to feel these demonic-like things be pumped by your heart and made to flow through your blood stream; unless you know what it feels like to be a battleground for a war within your body you never authorized, or to be forever walking with the sword of Damocles dangling above your head, always looking behind your shoulder on the lookout for your murderous stalker even though they really live inside your own body, then please don't give us unsolicited advice on how to deal with our cancer. Especially when your “advice” comes in the misguided, harmful form of telling us to be positive at all times and avoid anger.

Your well-intended moralizing comes from a place of such overwhelming privilege. You don't understand, and you can't understand, unless it's happened to you.
Don't tell us how to feel. Don't ram your toxic positivity down our throats and deny us our grief, our anxiety, our all-consuming terror.

We understand what you say comes from a place of your own fear of mortality. That the idea of simply "being positive" can erase the fear (or maybe stop the cancer from growing). Perhaps you think “I would never be afraid of cancer like this person because I would be thinking positively.” Anything to remove yourself from the possibility that this could happen to you too. You swear to yourself you’d remain super positive, and not give cancer the chance to latch on to any negativity that could make it stronger.
Maybe you think the escape from this is to look for the “silver lining” of cancer. The good side to everything. A “how can we make this a learning experience?” of the most cringe-worthy, terrible calibre.

Maybe you’ve made the horrendous mistake of saying any of these things out loud to someone who has cancer.

OK, so right away I want to tell you—cancer doesn’t grow or shrink or get cured based on how positive you insist your thoughts or someone’s thoughts be. That's just not how it works.

Also, there is no “silver lining” to cancer. Some things don’t have silver linings. Some things are just horrible. Cancer is one of those things.
And you wouldn't know, because you.
Don't.
Have.
Cancer.

You will never understand if you don't listen to us, and instead choose to ram condescending rhetoric down our throats, which is just a more detrimental version of sticking your fingers in your ears and pretending not to hear.

You say you want to help, but in reality it feels like you’re just tossing out meaningless banalities and empty promises while not-so-silently reminding us how to deal with cancer “properly”. If you want to help, you'll listen to us when we get mad and frustrated. You'll be open to hearing why what you say can be so hurtful, instead of jumping on the defensive.

When some of you say “I’m here for you, let me know if you need anything!” while simultaneously reminding us how important it is to stay positive, it often appears that your shoulder to cry on is only to be offered if we deal with our emotions and cancer in a manner that is convenient for you. You'll stick with us through the good days, eager to offer your companionship on days we feel happier, and then suddenly take off as soon as we're having a bad day and dare to let our feelings out.

Fear, for many of us, manifests as frustration and anger. And manifested via fear or not, anger itself is a common emotion when dealing with cancer. It's not us being "negative" people, and it's unfortunate that pop culture psychology would lead you to think that way, but who could blame you for adopting that maxim as a quick and simple explanation for someone's reactions to a life-threatening disease? It's so easy to say "I don't want negativity in my life" and then shut us out, while you run off to your own safe little bubble, where you don’t have to worry about your friends’ cancer and “negative emotions”.

It often seems that when someone says they'll be there for us through all this cancer shit, what they really mean is they'll be there for us on the "up" days. The “good” days.

You know the ones.

The days where we might act like the Hollywood portrait of the perfect cancer patient. Taking it all in stride. Smiling all the time and never complaining.

An inspiration to others in our never-ending glowing positivity through even the most dim of diagnosis.
And if we cry, it’s a sweet, gentle “sobering” moment.
No screaming or yelling or general frustration at the prospect of our bodies trying to kill us, of course. Oh no, that’s negativity. Cut those cancer sufferers out of your life asap, am I right?! I mean, they’re just so angry and negative about their blood cells mutating into little death balls! Like, keep your emotions in check, geeez!

If Hollywood Cancer Patient is what you want, fine. Be honest up front and don't tell your friends with cancer that you'll be there for them. Because what you want is a fairy tale, not a friend with cancer.
Cancer is ugly and full of tears and confusion and frustration and mood swings and absolute, undignified terror. If you want to neatly chalk that up to “negativity I don’t need in my life right now”, you have lied to a sick friend when saying you’d be there for them.

If you say you care, then mean it.
Otherwise, keep your disingenuous and moralizing platitudes to yourself.

Moreover, don’t give any advice that wasn’t asked for, and that you yourself have never taken before personally. Have you had cancer before? No? Then your unsolicited advice is most likely coming from a place of ignorance and can do more harm than good.

I’ll close this with a great quote I just read on this whole “toxic positivity” movement:

“[T]hat relentless focus on positivity...“the tyranny of prescriptive joy”….Seeking out people who bring ‘positive vibes only’ will ensure shallow bonds…Instead, the relationship becomes a performance of happiness. Difficult conversations, moments of vulnerability — all off the table.
[Cancer patients] can’t shut their eyes and pretend the problem doesn’t exist; show them that you won’t, either.”

Day 60

Day 60 is landmark date for BMT (Bone Marrow Transplant) patients. Have I written about this already? I can't remember. I can't remember who I tell what anymore; it feels like I'm always talking about the transplant stuff to everyone, which is partly why I have this blog, and mostly why there's been a recent surge of me writing in it; I'm so tired of talking about the transplant stuff all the time (and always repeating myself), so I figure if I write enough about it here, at least some people can stay updated, and I won't need to write/talk about it as much.

So anyway, yeah. Day 60. The other landmark dates are day 100 and of course, day 365. It was Day 60 for me yesterday, although the day fell on a Sunday, so I was not in clinic.  For day 60, this is what's happening: 
- I "graduate" from the transfusion daycare centre to the hematology/BMT clinic, which is fantastic because it's far fewer people, and that also means less waiting. The daycare is utterly chaotic, for a few reasons. I'm happy to "graduate".
- I may be getting fewer appointments now (once a week as opposed to twice a week), but that will depend on a lot of different factors, like my virus counts and all of that. So we'll see.
- Day 60 means it's time for another biopsy, just to ensure that things are going smoothly. My team is very happy with my blood counts so far, but rules is rules and you wanna keep an eye on these kinds of things. My biopsy might be tomorrow, or on Friday.

In addition to all of this, my Day 60 was followed up with some good news today--well, the finding out that my next appointment (tomorrow) is already to be at the BMT clinic (I thought I'd have to wait til next week), and the other exciting news is that my virus counts are continuing to go down. (Speaking of which, I don't have to do that clinical trial I may or may not have mentioned here.) Yay!

Keeping my fingers crossed that news stays positive. :)

Memories & freckles

According to Facebook Memories (and my own memory!), on this day last year Mike and I took an overnight trip to London, Ontario. I remember feeling so horribly sick that evening, and we had to cut our night short and head back to the air bnb we were staying at so I could lie down, and I ended up falling asleep at around 9pm! I couldn't understand why I felt so sick; I didn't have a cold or the flu or anything, I just felt so fatigued and awful. Thinking back, I really believe that was the beginning of my relapse. I didn't have my blood test until December 18th, so the timing makes sense. It's kind of a creepy feeling for me, thinking of that trip.

In that vein, I also remember going out to see a friend's show in late November and then going out for drinks afterward, then going home only to feel like I had drunk the whole bar and had caught the flu at the same time. That was November 23rd-ish, so that was definitely the relapse. It's so fucking creepy to think back to that night now, thinking of how much fun I had, and being so confused as to why I felt so utterly sick when I got home, having no idea what awaited me in a few weeks' time.

Oh well. Things could be worse. And I hope they don't get that way. I refuse!

In other news, the chemo I got during my transplant treatment gave me freckles. How random is that?!

Gossip (as in: the topic, not as in: I have any)

I know this topic has nothing to do with cancer or transplants, but this *is* still my blog, and I write about other things in here too, ya know! lol

Anyway, just something that's been on my mind lately. Gossip. Bad-mouthing people.

To be clear right off the bat--I'm not talking about having a wine & bitch session (or coffee/tea/whatever have you & bitch) session with your bff. That's totally different from badmouthing & gossiping about everyone you know as a regular hobby for about a hundred different reasons I'm not going to get into right now. But I just wanted to get that distinction out of the way.

But yeah. Badmouthing others.

It took me til my late 30s to truly understand the whole concept of "if people badmouth other people when they're around you, they do the same thing about you around other people." That "foolish" voice they give their friends in their stories when they recite them to me? That's the same "foolish" voice they give ME when they recount stories about me when they're with those friends.

It's such a harsh lesson to learn, and I don't know why it took me so long to learn. Maybe some level of conceit? Like, "oh, I'm the special COOL friend they all come to to vent?" HAHAHA DAAAMN at that completely unearned level of self-importance, dear late-20s-era me! Ugh. Embarrassing.

I used to have people in my outer friends' circle who I would badmouth a lot because I really felt our attitudes clashed and I didn't care about staying friends with them. I was too much of a coward to cut them out of my life, but once I realized what a shitty human I was being, I finally unfriended them all on Facebook--not just because I felt like our friendship would lead nowhere, but also because I felt like I didn't deserve their friendship if I talked about them like that.

And...yeah. I'm not sure what else to say about this. I don't have any witty closing to this or anything. I'm not good at writing blogs. I just write what's in my mind (or on it!), and when I'm done, the post is done. Til next time!

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!

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.

The ICU stories

It's Saturday night and I'm still waiting for my bone marrow test results from Tuesday. I had a biopsy at the same time and I still don't know what the results are.

I'm going to tell a story about something that happened to me while I was doing my 2nd round of induction chemo in April. One night, my blood pressure dropped suddenly out of nowhere, and it wouldn't go back up. The nurses had to keep checking every hour and were so worried that they had to contact ICU and the ICU team followed me for a bit. My nurse had me change into a nightgown, because she said, "we don't know what's going to happen" and it would be a shame if they had to cut open "my super cool Spider-Man shirt" if they needed quick access to my chest. What the fuck!
Also, because they didn't know what was going to happen next, she told me it would be best if I called my husband to come to the hospital. So I did. It was all so surreal.
The ICU team assessed me and kept a close eye on me, but thankfully in a couple of days by blood pressure went back on its own and I didn't need to visit the ICU after all. They had been worried about kidney failure but thankfully that didn't happen.
I did, however, end up getting C-diff., followed by a couple of other infections which was a blessing in disguise, because I ended up getting an isolation room to myself for the rest of my stay, and it was AMAAAAAZING. I was actually able to get some rest and NOT wake up in a ball of stress every morning!

This reminds me of a sort of similar situation that happened in 2013, during consolidation chemo, when my body went into shock and I ended up being out for 3 days. I blacked out on Sunday and woke up on Wednesday. Once again, the ICU team came up to assess me and follow me and once again I didn't have to end up there, but it was a similar situation in that my blood pressure was dropping like crazy. It was a bit different though, because it all started with a crazy fast heartbeat; I woke up that Sunday with my heart racing, as if I woke up in the middle of running up & down stairs in a mess of feverish thoughts (my mind was utter gibberish, it was weeeird).
I remember just as I was blacking out, I saw my blood pressure numbers dropping and my heart rate going up up up....what a sight! SO many different thoughts and feelings went through my head.
I kind of came to/in and out over the next few days in a feverish confusion but didn't fully wake up until Wednesday. That was some crazy shit. Turns out it was septic shock.

So chemo is just super fun, ya know? This is why I'm always so scared to go in and get chemo, and why in some ways I'm more afraid of the chemo than the cancer itself, which I know may sound weird, but hopefully these stories make it a bit understandable!

?!

I'm having a really hard time picturing the future and I know that's a fucked-up thing to say, but I gotta say it somewhere, because it's terrifying.

I get discharged on Tuesday and return as an out-patient on Friday for my bone marrow test; I'll get the results the following week to find out if the chemo worked. I really hope it did, because if not, well, I mean...

2 posts in 1 day? That's weird.

Maybe it's not THAT weird. It's often like that for me--I won't post for a long time, and then suddenly I'll post a whole bunch of times in quick succession--even twice in one day! I'm guessing the date will show up as a day later from the previous post, but don't let that fool ya--it's only after midnight. it's still the same damn day. :P

Anyway. It's been a weird day. A few health setbacks (NOTHING major, NOT at all), and except for dancing, I haven't felt like doing all day except hang out Facebook & my gossip image boards the entire day. I don't mean that in a "oh I'm so depressed" way, but just a neutral "meh, didn't feel like doing anything else". Not that I have much choice of things to do locked up in this room, lol--I played Nintendo for a bit but stopped after getting incredibly frustrated. I listened to a LOT of music, especially Hello Project stuff. I now have some new fave Morning Musume songs that I never knew existed. I didn't feel like watching any of my shows, though. Ah well. Hopefully tomorrow!

Privacy, tranquility, and some sunlight!

I'm doing OK now, but the weekend before last I was so sick that I couldn't even sit up on my own and the ICU team had to come and assess me and they followed me for awhile. Glad I didn't have to end up in the ICU after all, but I got some nasty infections which led to me getting my own private room (where I still am now), which is pretty darn amazing. I have zero stress in here, no noise, and I can sleep peacefully. Also, I have a huge window (as opposed to a wall and a curtain) and not only do I get sunlight, but being up on the 15th floor, I have a pretty nice view of part of downtown Toronto.

It's like night & day compared to the tiny dark room I was sharing with a roommate beforehand, to the point that I genuinely feel that the expression "like night & day" doesn't quite cut it, and I should invent a new idiom to help explain how I feel.

I don't know how much longer I get to benefit from this privacy but I'm treasuring every moment it lasts. A person can actually,  ya know, RECOVER and HEAL in a room like this!

Bond & bones

After being juggled around for awhile between doctors (and yet ANOTHER bone marrow test; my back is just a series of holes at this point), the final decision is noooo, I'm not in remission, I have to be RE-admitted to the hospital for another 4-6 weeks (sometime in the next few days), we're starting over again with induction therapy (called re-induction), and this time they're giving me THREE types of chemo at once, which I've been ensured is a lot more toxic (apparently a good thing--haha gotta kill them cancer cells), but they wouldn't give it to me if they didn't think I couldn't handle it and they're still acting optimistic, so okay.
I passed the cardiac tests, so yay (you need to pass those in order to get chemo, ugh).

At this point I just want to get it over with. We're kinda running out of options with high success rates if this one doesn't work out, so it's not so much that I'm scared right now as much as that my brain has completely went the "well, fuck all of this" route and is in some kind of weird-denial...not complete denial as here I am writing it all out, but it's definitely reached some weird manic area where I've escaped into this happy universe of James Bond and watch another Bond movie every night, and those movies feel more real to me than whatever is happening to me in my bone marrow, and you know what, if reality is how you perceive the world, then fuck it, my world is M16 agents and Her Majesty's Secret Service and the only thing I really gotta worry about is crazy cartoonish villains who want to take over the world.

So yay, anxiety!

Pretty anxious these days...it's especially bad at night, but today I've been anxious all day. My doctors gave me meds for that, but I mean.....yeah. It is what it is. 

I need to do a FIFTH bone marrow test on  Tuesday (long story); the good news is my oncologist thinks I may be in remission after all (an even longer & much more complicated story), and it's more being in limbo in the meantime. Things look good but we don't know for sure. And either way I still need more chemo, we just don't know yet how much and what type, and I still have to wait on the transplant...alllll so stressful. So yay, anxiety! 

I'm enjoying my nightly routine of watching The Simpsons and/or Seinfeld and/or The Office in bed while I chill online, waiting for my sleeping pills to kick in. But lately the anxiety I've been dealing with is starting to creep into my nightly "wind-down" time and the sleeping problems are getting worse. Argh. 

The cabin fever is also getting really bad and contributing to me feeling really down. I miss my ordinary life. I miss going to work and running errands and going shopping.
Tonight was Saturday and I REALLY missed my usual Saturday routine of socializing and going to my fave karaoke place, moreso than usual. 

And also, I miss my mom and I also think about my dead roommate every day. 

All right, enough venting for now. I hope my next entry is a more upbeat one! ;) 

In limbo

Have I already written a post titled "in limbo"? It wouldn't surprise me, lol...

Anyway, still in limbo. Sooo tired of it. I didn't update after my last appointment at hematology but whatever. That was a week and a half ago. Basically they're still confused by my counts: red blood cells are coming back up (and platelets too, yay!) but my white blood cells are not really doing as good. They told me to come back in 2 weeks when they scheduled YET ANOTHER BONE MARROW TEST. I asked them why at this point they don't just do a biopsy, but they said they'd run into the same problems. OK, whatevs. In the meantime I had to return to the hospital for a blood transfusion but in the end I didn't even need one, but I did need to get some fluids because apparently I'm dehydrated.

I'm STILL not used to being bald. I get a glimpse of myself in the mirror and I'm like THE FUCK....oh yeah. 

I'm happy to be home but also bored of it. Last night I dreamt I was at a bar ordering red wine. Oh, how I wish I could! In the dream the folks I was with were like "um, shouldn't you NOT be drinking right now?" and I was like "yeah, probably not."

Stop projecting!

I’m so tired of people telling me things like “oh we take little comforts for granted!” Or “oh the things we take for granted!” when I tell them how happy I am to be out of he hospital. First of all, you don’t even have cancer so how would you know, but even more importantly—speak for yourself! Stop using “we”. Refer to yourself & yourself ONLY because we all know that’s who you’re talking about here. Don’t include me in your inability to appreciate “the little things” in life. I always have, it didn’t take cancer for me to see that. If it takes a life threatening illness for you to appreciate your home & hobbies, that’s your own personal shortcomings that you have no business projecting on to me.

Ever since I was discharged from the hospital back in 2013, not a single day would go by where I wouldn’t be grateful I still wasn’t in there. Not a single day, over the past 6 years. Yes, I thought about how happy and grateful I was to be alive and not in that hospital every single day for 6 years. The first three years were terrifying because remission is in many ways scarier than the hospital stay, but I was still super grateful to be at home during that time. (But remission is terrifying as fuck, as I'll talk about that another time--though there's tons of posts just about that if you scroll back far enough to 2013-2014, I'm sure.)

Also: it didn’t take getting cancer for me to be "grateful for the little things". I’ve always enjoyed my cozy apartment and little things like video game universes or Christmas decorations or tv series premieres or awards shows—-things that people would also ironically roll me eyes at me for. (Gee, that seems fair, huh?)

Anyway, all this to say—stop projecting your own personal shortcomings onto me, all right?

And by the way. Getting cancer isn't this crazy catharsis where you look at the world differently like it is in the movies. I mean, maybe it is for SOME people, but certainly not for me. Yeah, basic things felt a lot more awesome once I survived the first time--like just being able to return to work and ride public transportation and things like that---but it's not like I had some kind of crazy life-changing mind-blowing CATHARSIS. I guess that happens to some people, but I don't personally understand living your life so poorly or so half-assedly that it takes nearly dying to get your shit into gear. I'm really sorry if that sounds snobby, but WTF, man? Do you want me to put my true feelings out here or not? People always ask how I feel, so here it is---when death is always a lingering possibility, of course not all my thoughts are going to be happy or kind ones.

There are a couple of things I felt differently about after the first time I got cancer, and here they are:

1. Spend more time by myself, or for myself. Spending time with people who don't matter is never a good thing. I've talked about this to a lot of people and have even taught others to change their lifestyles to reflect this. Don't spend time with people out of pity. You're being dishonest and no one wins.

(There are teeny tiny little exceptions here & there, of course, but--tread carefully! There's very little out there that's more hurtful and pointless than a fake friendship.)

2. Eat. Eat eat eat. While I was hospitalized in 2013, I got stuck watching a lot of daytime TV cuz I didn't have Netflix back then. A lot of shows about diets and how to stay slim. I can't explain how that horrified me while I was getting chemo and COULDN'T eat. All I wanted was food. Ladies, a shake is NOT a meal. Love yourself. Eat a goddamn burger or pizza. Life's short. You'll regret all the time you spent starving yourself, I guarantee it.


That's it. It's late and I'm tired and I'm done ranting for now.

Breathless

I'm so out of breath all the time, ugh. Doing the smallest activities requires soooo much energy. I remember this from the last time I had cancer, but yeah. I'm so drained. Taking a shower requires a lot of rest afterward, for example. I can barely help Mike with the dishes, and I can't really prepare any meals.

Anyway! I'm just waiting for my sleeping pills to kick in as I gotta be up in a few hours to return to the hospital for my weekly blood test and meeting with my oncologist. I get my latest bone marrow test results, too. 

I'm so grateful to be at home (and that is an understatement) but I've definitely been going a little stir-crazy (and that is also an understatement!). I really want to go out but I'm not allowed to go to crowded places. I could technically go for a walk but it's not the best weather for me to go outside, as it's been cold and icy and I could risk falling, and considering how I wiped I get just from taking things out of the fridge or putting things away, just walking down the street would be incredibly exhausting (especially if there's ice I need to manage). Speaking of which! Our superintendent is useless and didn't get rid of the ice leading from our door to the street, and it was this whoooole big thing and Mike had to be late from work to help me get from our door to the Uber....anyway, it's a long story I don't feel like typing out, but the long and short of it is, we both had to bug the super non-stop (after repeatedly reminding him of my leukemia and how if I fall on the ice I'm screwed due to my low blood counts) and finally he got someone to remove the ice. I guess he knows it's the tenants' right that there needs to be safe and secure paths to and from our own doors. Dayyyyyuuum.

Anyway, yeah. Wish I could go out. I'll be able to eventually, once my counts go up. But for now, it's just a lot of Netflix and video games and books. Which are all things I love anyway, but it's hard when a) I'm constantly anxious about the cancer, and b) I know I don't have the option of going out, and when I can't break those things up with going for walks or running errands or anything like that. And I really miss working! I'd love to go back to work soon. But I don't think that's going to happen for awhile. Which is scary, both in terms of boredom and lack of income. But I'll figure something out somehow.

I'm getting out of breath just typing this all out! hahaha. Damn red blood cells, you ain't playin'.

Only 1 of us will make it out of here alive

I'm not sure why I've waited nearly a month to write in here, but here I am. A lot has happened in the past few weeks!

For one, I've been discharged. I'm not in remission though. I had a bone marrow aspiration (not a biopsy) done while I was still in the hospital, annnnd incredibly long and complicated story short, another bone marrow test needed to be done to determine what's happening with my cells and to see how well (if at all) the chemo worked. But my doctor sent me home in the meantime, because, as she said, "I needed a break." Boy did I ever! I've been home nearly a week now...well, as of Wednesday it will be. On Friday I went in for a blood test and got another bone marrow test done; hopefully, that one will be able to give my doctors a better idea of what's going on with the cancer and all that, so we can figure out what steps to take next.
For now I'm an out-patient and will be going to see my original oncologist (at the same hospital) once a week, on Fridays, for check-ups and blood tests.
I have to go back tomorrow though to get the dressing on my PICC line changed. They couldn't do it for me on Friday (another long and complicated story...a rather frustrating one at that, too) so I have to make a special trip just for that tomorrow. Quite annoying. PICC lines are not fun to take care of, and that's an understatement. They certainly make showering quite a hassle.

Another thing that's happened recently is that one of my roommates died. Roomie number 3, to be exact. I feel a bit tacky referring to her as such, but I also don't want to name names on my blog either, because that feels even worse somehow. Anyway (speaking of showers), I was taking a shower last Monday (this was when I was still at the hospital) and that horrible Code Blue alarm went off, which is so loud you can hear it even when you're showering. I heard my floor/ward mentioned on the alarm and I was shocked! When I got out of the shower and walked back to my room, I passed by my old room, which is where the Code was happening. There must have been about 15-20 nurses and doctors spilling out of the room where my former roommate was. I had never seen anything like it.

I found out last night that she died that day, and I've been thinking about it a lot. My mind is all jumbled and weird. I have a lot of questions about all of this that will never get answered, but that's just how it is, huh. She was 36 and boy did she have a huge family and friends network that was constantly in her room. She's going to be missed by like a zillion people. And her kids! She had 2 kids. I've been learning a bit more about her by googling her but I can't find any social media. Anyway, 36 years old! She was so young. I keep thinking about both of us being in the same hospital and sharing the same bathroom and walking the same halls and having the same fears, but I went home and she died. Not that I'm out of the woods yet (by any means), but for now, that's how it is. It's just fucked-up and it's a lot to process. It doesn't make any sense and I know that expecting anything to make sense when it comes to cancer is kind of an entitled attitude to have, but I still think it's pretty fucked.

RIP.

Time & Space

Room #5, but currently no roommate. I've been so lucky! The difference of not having a roommate is amazing. My anxiety level is at like, a 6/10 instead of at a constant 10/10. It makes it so much easier to BREATHE.

I'm sure I'll get one by tomorrow (it's been 2 days now), but I've been enjoying the silence and the space in the meantime. Very grateful for that. 

On the other hand, I still don't know how to make it through another whole week here. I feel so demotivated. I hate not having any idea at all WTF the next couple of months will bring.

Just thinking

One of the reasons I use this blog is to keep my social media clear of cancer talk, but seeing as I use Facebook to pour out my daily thoughts, and keep me entertained while I'm stuck in the hospital with not much to do, I end up talking about cancer a lot anyway. Or I at least end up talking about the hospital. It's all that's going on in my life right now, so it's kind of hard not to.

I hate not knowing the future. I hate not knowing what's going to happen. I remember that feeling from last time. I have no idea what's going to happen next--will they find my a donor? How long will it take them? What if they don't find one? How much consolidation chemo will I need? Am I going to die?

Patience (not patients!)

This place is REALLY teaching me patience (and I noticed the pun only when I wrote the subject line of the post, ha!).

Long story short, we're stuffed 2 to a room, and very close together. No matter how well you get along with your roommate, you're bound to drive each other crazy after awhile.
Which is definitely my case right now.

My roommate (who is otherwise quite nice) has tons of visitors every day, and is on her cellphone for hours at a time. starting 8am. (Once she was on at 6:30am.) She gets REALLY into her conversations and is super loud. And she's just a few feet away from my bed...we're only separated by a mere curtain. (As I keep writing on social media, this is a sardine hospital!)
I just can't take it anymore, I am so sick of hearing her voice all day long. I was blasting music on my earphones to try to block is out, but after doing that for a week, and removing the earbuds at one point and hearing how damn LOUD it was, I decided to give my poor ears a break and just listen to music/watch movies on my laptop without the earphones.
But her nurse insists I listen to stuff with earphones...never mind the fact that she cackles on her cell phone starting at 8 am and has entire family gatherings in here daily, and I never make a peep.
But if she wants to sleep in the afternoon, I gotta use earphones again (because fuck my ears, apparently) so she can sleep. (Hmmm, when she starts up at 8am I'd like to sleep a bit more too, but you don't hear me complaining!)

It's just all so exhausting. Such is the nature of being stuffed 2 to a room with barely any space to move around. I'm just so fucking tired of hearing her voice. I can't explain how tired of her voice I am. I'm already stressed out about, ya know, CANCER, and the transplant, and finding the donor and all that (as everyone in this ward is), and then we add this really undesirable (understatement) rooming situation to the mix, and ugh...what a disaster.

Food!

I am soooo grateful that I am not nauseous anymore and that I have my appetite back, and that I’m eating normally again.

But!

The food service here......oh man.

They have you fill out a menu every morning so you can choose what you want to eat.
They’ve gotten my meals wrong 7 times so far (twice today).
I mean, what’s the point?

Neti pot syringes

I'm not allowed to blow my nose (because my platelets are low, so if there's blood, it'll keep bleeding...) so my nurses are giving me little saline pushers (like "syringes" kind of) to stick up my nose and squirt with saline. It's hilarious, but it works to relieve the pressure in my head! Like one of the nurses said, it's like a netti pot...which is, by the way, something I had never heard of before facebook. But since facebook, I've seen it everywhere. So odd.

I had another CT scan today. I hate going for those, because transport can take awhile (they bring you via wheelchair) and it's cold downstairs. FWIW, so far they've been quicker than the Royal Vic, which makes sense, seeing as the Royal Vic was a huge hospital for many different things, whereas the Princess Margaret is strictly a cancer hospital, and it's NOWHERE as big. I mean, the Royal Victoria...man, that place was huge! It was like a castle.

I have a lot to say but I don't know where to start, so I'll just end this here for now.

Clarification

Add-on to my last post: I re-read my last post and it's a bit unclear, so I'm adding this! :P

Of course, I am happy that I am already happy with my life the way it is. I am happy to not have any real regrets. Not everyone is so lucky. (Welllll, maybe "lucky" isn't the right word to use, because some--obviously not all, but SOME--people have regrets out of their own doing, be it sheer laziness or foolishness. But not everyone, of course!)
Anyway, I don't want to come off as "boo, I can't travel, everything sucks!", or as acting unhappy because *travel* is the one thing I can't have. 
The point of the post was the money thing....so many people still insist money cant buy you happiness, and I wanted to point out one of the very many ways that it can, by talking about the one & only thing that I would change about my life. The only thing that I want to change about my life...but I can't....because it costs money.
But if I had money, I would do it, and it would bring me much happiness. 

That being said, while I'm not complaining that I can't afford to travel in general, I AM complaining about the fact that I can't go to Dubai, specifically. That trip was yeaaaars in the making. I can't believe how close I was to finally going. I mean, the plane tickets were bought & everything. I sure hope we can get our tickets refunded. (That's actually something we're working on right now, but that's another rant for another day.)

Does that make sense?

Or maybe my original post already made sense to begin with. Haha, who knows! My brain is so fuzzy these days.

All the happiness money can buy me

When I was hospitalized with leukemia the first time, and things were looking really really really bad, and I was wondering if I would even make it through that summer, I didn’t have any real regrets about anything in my life because in general, if I want to do something, I just do it. I thought to myself “what will I do differently if I survive this?” And then thought “nothing really, because I’m happy with my life the way it is. I just wish I could travel more.” (Yeahhh there was that whole thing about prioritizing alone time, but I'm talking about BIG GOALS here.)

Except travelling is not something you can just ...go do. It takes time to save up enough money to be able to afford to travel. Especially because of the UTTERLY INSANE DEBT I incurred due to being in the hospital for most of 2013—that took years to pay off. So yeah, no traveling for awhile. But all these years later I finally paid off my debts and I was finally ready to travel (for vacation) again. And not just anywhere, but to Dubai. Dubai! A trip that took years and YEARS of planning.

Mike and I first discussed going 10 years ago. 5 years ago, one of my oldest & dearest friends moved there, but we still couldn’t just pick up and go visit her because we couldn’t afford it. Fiiiiiinally, at the end of 2018, 10 years of hard work had paid off, and I had paid off all my debts so that I was ready to go, and tickets were bought...and then this shit happens.

No Dubai. No travelling anywhere. Just sitting in the damn hospital. 

Thankfully I’ve taken some small trips during remission, when I’ve visited Mike while he was on tour (but I didn’t have to pay for most of that, thankfully—otherwise I never would have been able to have gone). He was working for most of those trips, of course--but! We got in a trip to Miami together, and that was honestly one of the best trips I've ever taken in my life. 

Travelling is expensive. Travelling requires money. Travel is the only thing that I feel is missing from my life right now. (Uhh...other than the current situation of my fucked-up bone marrow needing to be repaired asap, of course!)

Anyway, I dunno. If you’ve made it this far—if you’ve read all this and still firmly believe “money doesn’t buy happiness!”, then I give up. I also don’t think you really know what it’s like to really, really want something—or to be without money for so long. 

What doesn't kill you makes you stronger (it can!)

A lot of people pass around a meme on social media that says something along the lines of "What didn't kill me didn't make stronger. It gave unhealthy coping mechanisms and a dark sense of humour, but it didn't make me stronger."

Now sure, it's funny, but I often find the exact opposite to be true. When I go through something awful, I usually learn a thing or two, whether it's a different way to look at certain situations, or new skills I can use in some way.

Battling cancer the first time definitely made me stronger. I'm generally not as scared this time--at least not right now! My primary emotion if anger. When the doctor told me I had relapsed, my response was to sigh, swear, and then snicker. Because it was just so absurd to me.

I mean, sure, I'm scared, and sometimes I'll get bouts of absolute terror. But I mostly can't help but take a "been there, done that" attitude to the whole thing, which makes it so much less scary than the last time, when I had no idea what was going on. Fear of the unknown sucks. So does the reality of the not-so-great prognosis of leukemia in general, but that's another discussion for another time.
So yeah, I'm scared, but mostly I'm just disappointed and sad, and above all, so incredibly angry. The anger outweighs the fear.

My life was going so well--settling down with my husband in a new city that I absolutely adore, both of us finally IN our careers, and finally having paid all off my debts--and then blam, this happens. A big giant train crash in the middle of my lifeline.

And I know once I get to the transplant stage, I'm probably going to get really scared all over again. Because the transplant is something new, and because so many things could go wrong with it, too. Also, there's not all that much of a plan C after that. So let's hope this goes well!

Relapse!

Yay, my cancer's back.

I guess if those asshole leukemic cells can be revived, so can this blog.

I think it's best I do that, so I don't constantly litter my social media (or Facebook anyway) with my cancer bitching. Ha ha ha!

I'm gonna need a bone marrow transplant this time. Ahhhhh, cancer, I'm so bored of you.