18 Months Post-HSCT Update

Well it’s not quite the 18 month mark yet, but close enough.  So I have totally been slacking on writing a blog post.  I meant to do one at the 15 month mark, but with it being summer and all when that happened, I just never got around to it.   I don’t really have much to post about, but I figured that I do have a lot of people following my blog to see how I am doing in my life and recovery post-HSCT, so I’ll continue to post updates.

So how am I doing overall?  Well pretty damn good actually. I’d like to think I’m as close to being “normal” as I will be.  I mean I’d love to be 100% of what I used to be, but I’m realistic and am sure that will never happen, but I’m content with where I am right now.  As I’ve posted in the past, I went back to work around 9 months post-HSCT and I am still working my job.  Most weeks I do work 40 hours a week, some weeks less hours, but it is not the easiest of jobs.  I still walk an average of 7-12 miles a day at work and lift lots of heavy boxes. But it is a type of job that I enjoy doing as it does keep me busy and I am not a person that likes to sit around and do nothing. I’m weird like that.

As for improvements, really nothing new compared to my 1 year update.  I think I am where I am going to stay at in the way of improvements. And then most of the side-effects have worn off as well. I am still in the roller-coaster ride of recovery as the side effects from the chemo and the whole treatment tend to last around 2 years, so there are times when I don’t feel the greatest for several days in a row, but it’s to be expected, and I can still function fine, but I can tell it’s happening.

Now for a section of this post that may be TMI for many people.  Going to discuss the girly things.  So feel free to skip this paragraph if topics like this disturb you, you all know me and my oversharing of info…. So we all know that menopause can be a side-effect of the chemo, unfortunately for me that does not appear to be happening.  I was one of the few people actually hoping for that, mainly to curb the monthly pain of my endometriosis.  But because of the chemo it has made my hormones all crazy, I mean my periods were all out of whack.  A couple of times I went 6-8 weeks without getting one, then for a while it was every 2 weeks, which just totally sucked.  It appears I am now back on an average monthly schedule, which for me tends to be 28 days exactly, my body likes schedules apparently. I hate getting my period, well really who doesn’t, and if you enjoy them well you are just plain weird.  But ever since getting diagnosed with MS they have been a miserable experience for me, I get horrible pain in my pelvic region that goes all the way down my legs for the first 2-3 days of it.  Not cramping pain, but basically it’s nerve pain, and walking makes it worse, it doesn’t go away until after the heavy bleeding is done.  It sucks, it really does.  Sleeping is difficult on those days, and really on days like that I really have no sympathy for anyone at all when they bitch about any little ache or pain they have.  I mean those of us who deal with nerve pain, understand what pain is and that nothing touches that pain at all.  So I suck it up and deal with it and understand that I am stuck with that on a monthly basis, which trust me is way better than every 2 weeks. Spinal lesions in certain locations tend to cause these issues, and I know it’s my large one that does it.

Otherwise I am doing pretty good.  My main issues I still deal with off and on are numbness and tingling in my feet and hands.  My feet will never be 100% normal and I am okay with that.  The numbness and tingling in my hands comes and goes.  It’s never as bad as it was in the start, but it is still there at times.  I really notice it with weather fluctuations and hormone fluctuations. I have no weakness or anything like that anymore, just the irritating tingling and numbness sensations.  We are approaching fall/winter in my area, and in living in a desert area, we literally went from 90-100 degree days, to days with highs in the 40s and 50s, so there really is no adjustment period at all, just boom it’s cold. Except then the random couple days here and there when the temp gets in the 70s, and then it drops back down again. I really hate the temperature fluctuations like that, because the humidity changes and the pressure changes really mess with the human body in general, but even more so if you have nerve issues.  I have no idea why that is, but it’s the consensus amongst many with MS, is that changes like that just cause your body to go crazy. The one thing that I am happy to report is that I do not really have any muscle tightness in my legs so far this fall/winter, normally that happens as soon as the weather starts cooling down. For some reason cold weather always fucks with my legs. But maybe it’s because I work part of the time in a colder area, maybe I have gotten used to it, but regardless I don’t have that issue at this time and I am happy with that. In past years when that would flare up in the winter months it would suck, literally it would be difficult to lift up my legs all the way and the muscles would be super tight and at times really hurt, at times like that, there is no chance in hell I could have ever ran, I would have fallen over right away. So hopefully that stays away.

My cog fog is pretty much a thing of the past, sometimes it affects me a bit, but not really that bad.  Most other symptoms have gone away, or if they do pop up they don’t stick around for long.  The one issue I do still have thanks to my MS is some anxiety when it comes to driving on interstates.  In my state the speed limit on interstates is 80mph.  I don’t have any issues driving at that speed, but jesus christ, other people cannot drive at all.  I mean people cannot stay in their lane at all, they swerve all over the place, and passing semi trucks is not my favorite thing to do, especially when they start drifting into the passing lane when you are passing them.  I did a trip this past week where I drove a couple of hours on the interstate and by the end of it, I was exhausted from the anxiety and stress of driving.  Then on the drive home I was just a passenger and it still freaked me out.  I told my hubby that I need to ask my doctor for a prescription of valium to take when on road trips to calm me down, hahaha. Which this was never an issue for me pre-MS.  I have driven numerous long road trips by myself and with others and never had any issues before, I loved driving.  Now I don’t have any issues driving around my area, but interstates are a whole different thing.  I will happily leave the driving to someone else.

A couple of people have asked me how my stemmie siblings are doing.  Well we haven’t all kept in very good contact with each other, we’ve all moved on with our lives.  So I am not really sure how the Norwegians in my group are doing, I do need to eventually drop them messages to see how things are going, they aren’t super active on social media. My UK stemmie sis is doing great, has had clean MRIs and no progression and has been traveling, working and just loving living life with no active MS. My Aussie stemmie sis has had more difficulties with her recovery.  She did develop AVN in both hips and since my last blog post she had both hips replaced. She too has no MS progression and is doing great and is loving life and living it to the fullest.  She is still in the recovery period from her last hip replacement. So from the 3 of us that have blogged or kept a facebook page throughout our journeys, we are all doing great.

I used to always mention my goals for the future in my blog posts, pertaining to diet, exercise, meditation and all that crap. Why lie, I suck at keeping these goals.  I won’t pretend to do any of it. Diet is a big failure for me.  I do try to eat fairly healthy, but at the same time I give in to cravings and eat shit that I shouldn’t. I feel so much better when I do not eat dairy and gluten, but yet I continue to do it because it tastes good. My goal is to ditch gluten and dairy and eat a more paleo diet as I feel better on it, but I don’t know if that will happen or not, so a more realistic goal would be to eat more greens each day.  Exercise is non-existent at home, but I do walk a lot at work, so I think that counts a bit as I am at least active.  And then on my days off I often work around the house, so I keep busy.  Meditation is a joke, I suck at it.  I try to do it a bit at night before I fall asleep, but honestly I don’t have the time.  I realize people say you need to make time for yourself, but there are not enough hours in the day to do that.

My big issue really is stress.  I try to live a stress free life, but it is impossible.  I know there are people out there that say you can do it, you just choose not to, but for some people there are no choices.  Most people who follow my blog do not know much about my personal life, I don’t post much about my family, as I feel they deserve their privacy, but those who I am friends with know all about the things going on in my every day life.  But my youngest child is special needs and dealing with all the appointments and therapies and all that pertaining to her is time-consuming and stressful at times. I rarely have any “me time” where I can actually spend time on myself.  And this is one of the main reasons I also opted to have HSCT done, it’s difficult caring for a special needs child while battling MS and all the shitty symptoms that come from that, as well as having a bleak future due to the MS.

But on a more positive note I am trying to take more time to just enjoy life.  My family and I have taken several trips up to the mountains to just get away from it all.  We’ve spent time playing in creeks, hiking in the mountains and just enjoying nature.  The peace and quiet in the mountains truly is my happy place.  There is just nothing like spending a day in the mountains when you encounter no other people and hear no other humans, it’s just nature, I love it.  During the summer I also spent a lot of time in my garden.  My hubby did a lot of the care of the garden this summer because I worked most of the time and he did a damn good job at it too, but I loved getting to spend time outside, even pulling weeds doesn’t bother me.  There is just something about getting your hands dirty and getting in touch with nature. And then most recently I’ve spent a lot of time canning veggies, because it’s what I do, currently I’m canning tomatoes, and I’ve determined that canning tomatoes really is a huge pain in the ass, only thing worse than tomatoes is beets….  But they are delicious and worth it in the end.  And then I also am dealing with firewood too, but I love playing with chainsaws and splitting wood, again I’m weird, so I get my “me time” doing that.  Strange for most people, but it works for me. So that has been my life: work, canning, gardening, family and then an occasional trip away from society.

Now to discuss future medical plans.  Many people opt to have MRIs at the 1 year mark, 18 month mark, 2 year mark, etc.  I do not plan to have any more MRIs done.  They are expensive and not going to show me anything I don’t already know. Even if one day my MS returns I probably still will not have any more MRIs, it’s not like it changes anything. I no longer see my neurologist, he said there is no need for me to see him unless I have future relapses, and I agree with him, no need to waste the money seeing him for no reason at all. My regular doctor doesn’t have any real reason to see me either, other than for regular annual checkups.  I do plan to go to him though within the next month or two for my annual checkup and at that time will discuss how I’m doing and all that fun stuff.  I will send him a message prior to that appointment asking him to submit a blood work request, so I can have that done prior to the appointment so we can discuss the results. I most likely will just do a CBC, metabolic panel and perhaps a thyroid panel as well, given I am curious how my numbers are looking.  Everyone says bloodwork is important to do at the 18 month mark and 2 year mark, just to keep tabs on numbers, then after that you can do it on a yearly basis or when needed. The goal is for all my numbers to be in the normal range, as at the 1 year mark my white blood cell count was below normal.  I haven’t been sick all summer and I do work around other people, so I’m assuming those numbers must be back in the normal range, otherwise I’m sure I would have been sick several times throughout the summer, as there are always sick people out and about and people are disgusting and cough everywhere and never cover their mouths. Seriously people are disgusting. Plus my youngest goes to therapy sessions every week and kids in the waiting room are often coughing and touching everything and so far I’ve managed to not catch anything there either.  I do still use a lot of hand sanitizer though, it’s my new thing.  When I get off work and get to my car, I use hand sanitizer.  After shopping and leaving a store, hand sanitizer on everyone as soon as we get in the car.  I am in no way a germaphobe, but people are disgusting and I’d rather not everyone get sick because of that.

And then let’s do the regular discussion of the hair… If you ask anyone who is at this stage of recovery, there really are very few people who love their hair.  Those that do, most likely cut off all the curls.  When people discuss chemo curls, it literally means curls from hell.  I mean you cannot get rid of them unless you cut them off. Seriously my stemmie sis from Australia had her hair permanently straightened and it went back to being partially curly, she had it done again afterwards and I’m not sure how it is holding up at the moment, but these curls seem to be impossible to defeat. I have given up on my hair, I really have, it’s a fucking mess, it cannot be controlled at all.  It is finally long enough that I can pull the back half of it into a small ponytail, so that contains that section of it when I am at work.  Luckily I wear a hat, so you cannot see the rest of it.  I think that within another couple of months I will be able to pull all of it back into a ponytail, and that is the goal I am shooting for.  Then once it grows out long enough, I plan to cut the curls off, I am done with them.  I have somewhat naturally wavy hair to begin with, but it is nothing like this crazy mess of curls.  Now some people may be confused about what chemo curls are, but basically the first several inches of your hair that grow back in after chemo come in super curly for most people, but it’s only that part that is curly, the rest comes in fairly normal and straight after that.  Many people opt to just cut off the curls and rock the short hair for a bit longer, but there are some of us, who want our hair to grow out long enough so that we can pull it back, and in those cases, we opt to just deal with the damn curls, as much as it sucks. And I think at about the 15 month mark, most people are fed up with the curls, I rarely hear of people who love them.  And then when it comes to what color your hair grows back in, my hair grew back in the same color I had before, which seems to be a common trend for most people, although some people end up with a lot more gray. But anyways, here are a couple of pics from the past few months of my hair, I don’t have many recent pics of myself, most I’ve taken have included family members, and I don’t really want to post those pics here.  But there are some from the 15 month mark and some from current. Normally when I am out and about I wear a bandana just to keep the hair under control, but on days when it is cooperating a bit more I will wear a headband just to keep it from falling into my eyes.

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So that’s my update, nothing all too exciting to report.  But really that is a good thing when it comes to HSCT.  You don’t want exciting updates, you want normal and you want life to go back to normal, or at least a new normal.  But here are some pics taken in the last 6 months, just because a blog post needs pics.

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So onwards and upwards to the 2 year mark!  I will however try to blog more often and I will post a blog after I have my annual check-up with my doctor and have blood work done.


About Cat

I'm an outdoorsy gal, wife, mom of 2 and MS Warrior. I underwent HSCT in Russia in April/May 2016 to halt my MS and documented my entire journey while I was there in my blog and am now continuing to blog through my recovery.
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