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!
Thursday 24 October 2019
Wednesday 16 October 2019
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.
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.
Friday 11 October 2019
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".)
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".)
Thursday 10 October 2019
"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.”
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.”
Tuesday 8 October 2019
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. :)
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. :)
Sunday 6 October 2019
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?!
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?!
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