Compared to past weeks this last week has been pretty freaking good for me. I cannot complain at all. It’s like my body has reawakened and it’s wonderful. I’ve had fairly good energy, was able to walk about 6 miles the day I went to the fair, spent an entire day on my feet canning pickles, and have been able to do some gardening as well. Oh and then I don’t have to worry about menopause, but I’ll talk about that last since that may be TMI for some people. I realize this can all change with the whole rollercoaster ride, but I’m loving it while it lasts. I do also have to give kudos to my Aussie stemmie sister who climbed most of the way up Ayers Rock this past week. She has had a rougher recovery after dealing with a rare side effect of a stem cell transplant known as Engraftment Syndrome. After a several week hospital stay that set back her recovery, it appears she is living life to the fullest. I’m sure she’ll conquer that rock the next time she tries it.
As for me I did venture to the local county fair this past weekend, it was the 100th Anniversary and supposed to be better than ever. I think it was worse than last year honestly and the only reason we went is because we had free tickets, as I would never pay $8 a person for that. There were fewer livestock than past years, fewer vendors, fewer freebies, and the same pathetic germ-invested rides and over priced food vendors. But it was a way to kill an afternoon and I ended up walking about 3 miles around the fair grounds going through the different buildings. Then we finished up the day shopping around town, total that day I walked around 6 miles, which wasn’t bad and I wasn’t tired or sore at all. Oh and there was a cardboard cutout of Trump that we posed with, because I really like posing with random things like that, but I won’t post a picture of that since it’s a family pic and I won’t publicly post pics of my family on the blog, unfortunately there was none of Clinton. The main reason I posted about the fair is because last year at the fair I was recovering from a relapse and was on an oral steroid taper for it. Maneuvering around the fair last year was a battle because my left side was weak and my legs were really stiff and my balance was off. I spent a lot of time sitting on benches and it was an exhausting experience and not fun at all and the day really wore me out. So it was a nice change of pace to be able to go through the entire fair and never sit down once and still be energized at the end of the day. But here are some pics from that whole experience.
Then I accomplished what I consider a bigger feat yet, I canned 18 1/2 quarts of pickles on Monday. While that doesn’t seem super impressive I really struggled with canning last year. Between standing on my feet all day long and the crazy hot temps caused by the canning it really took a toll on me last year during canning season, I struggled to do more than 1 batch a day, it was so exhausting and the heat made all my symptoms flare. This year I did 3 batches in a row and it wasn’t tiring at all! Success! I won’t be doing a whole lot of canning this year because we don’t have a big garden, normally I can up hundreds of jars a year, but what can you do. Next year will be better. Now I will say when it comes to canning I really am a master at it. It’s my thing, I grew up canning and it comes easy to me. Now unlike some people I don’t have the title of Master Canner or Master Food Preserver or whatever it is currently is called, so people would say I have zero clout in the canning world. But honestly I fail to see the point in paying money and taking some stupid class to teach you how to be a master canner. Honestly it is not rocket science and quite frankly I’d trust people who have been canning for decades over those who randomly decided to rake a class and now think they are god’s gift to the canning community. But whatever. Same goes with gardening. Seems like everyone needs the ego trip of having some fancy title. But regardless I managed to can up pickles and I’m sure they will taste amazing later this winter. I also use Tattler reusable canning lids when I can things. I have mixed feelings on them, they are good for some things, horrible for others. But here’s some pics of my pickles.
The rest of my week has been filled with some gardening and landscaping projects that I started prior to going to Russia, nothing super exciting but it keeps me occupied.
So as per my usual routine I’ll discuss side effects. Really I’ve been doing pretty good this week. I think I had 2 hot flashes but nothing else. When I really exhaust myself during the day, my numbness in my hands and feet gets more intense, but always goes away as soon as I rest up. I have still been having some off and on issues with the left side of my neck. I’ve been doing daily stretching exercises several times a day on my neck which really seems to help keep the muscles loosened up. Then I do believe I also have some nerve pain going on there as it only seems to really flare up after I eat/drink certain things. Eating gluten, dairy, and any caffeinated beverage causes the nerve pain to occur for a couple of hours before fading away.
As for improvements….well this past week my energy level has been amazing and my mind has been so clear. It’s been so wonderful. Not sure how long it will last for, but I’m happy about it! Nothing else really amazing to report on that front.
Now for the TMI portion of this post, discussing menopause. So way back in the early days of this blog when I discussed fertility and HSCT I said that I was hoping for menopause. Crazy I know because of my age, but I have endometriosis which is painful and menopause often makes the pain from that goes away. Plus I have no desire to have more children in the future so it isn’t a big deal for me. I think it’s still up for debate on what percentage of people end up infertile after non-myleo HSCT, I’ve heard all sorts of percentages thrown around, but from what I have most recently gathered from the veteran’s group and other groups it appears about 25-30% of all people end up infertile after non-myleo HSCT. But that really seems to vary a lot by age, obviously those closer to natural menopause age tend to have that happen more than say people in their 20s or early 30s. Then also many people undergoing HSCT have already been through menopause so it isn’t something they need to worry about in general, other than just hoping their hormone levels stabilize so they don’t deal with hot flashes. Also some people say they get their fertility back right away and it lasts for 2-5 years and then they permanently go into menopause, although that seems to also occur more with women in their 40s and also more commonly with people who have done full-myleo HSCT. Now there have been quite a few women worldwide that have naturally conceived after having non-myleo HSCT and even a few that have naturally conceived after full-myleo. So maybe it’s luck or how your body wants to cooperate, hard to say.
So back to me. During HSCT I battled my period. At the start of treatment during the pre-testing I had to delay the transvaginal ultrasound because of bleeding, then when I was getting ready to go home I was battling it again, I just couldn’t win. Since then I have had occasionally spotting almost every month, but nothing crazy. About 2 weeks ago I had my usual ovulation pain so I assumed this dreaded event was going to happen, and low and behold yesterday my period started. So it appears menopause is not in the cards for me. I know a lot of women opt to do hormone testing at the 3 month mark, 6 month mark, and then randomly afterwards to see if they are in menopause or not. I was never planning to do that to begin with just because I didn’t care and it seemed like a waste of money. And from what I’ve gathered from quite a few veterans, including a couple that naturally conceived within a year after HSCT, which is not recommended at all by the way, they all tested positive for being in menopause and then a couple of months later ended up not being in menopause, so I really don’t know how accurate those tests are after a procedure like this. But I suppose if you are planning to have more children in the future that may be something to have done. I guess I’ll see if my period sticks around after this, but I’m assuming it will, normally my cycle is pretty regular every 28 days, so I guess I’ll know in another month. I know it can take a few months for everything to get back into its normal rhythm again. But it’s a good sign that the chemo has really worked its way out of my system which is also a good thing.
So that has been my excitement for the week. Next week I’ll discuss my 4 month birthday and take another picture of my hair. It really is coming in nicely now, although still patchy in spots, but it’s getting there.