So in my last blog post I discussed how that week went and really it was an overall pretty shitty week, this week however has been a bit better. Started off kinda shitty but then has been looking up as the week went on. The joys of the recovery rollercoaster. But my hair is starting to come in quite nicely, although still a bit patchy in spots because some of it really hung on for quite a while before deciding to fall out. I’ll post pictures either next week or the following week for my 4 month post.
My blog is entitled “Pain in the Neck” this week and it means exactly that. My neck has hurt all week long, in fact it’s been hurting for about 2 weeks now, it sucks. This same pain has happened on and off since I’ve gotten home, it pops up, annoys the hell out of me, sticks around for about 2 weeks, then disappears for 2-4 weeks, then pops back up again to annoy me once again. And it’s only on the left side of my neck. I know people are thinking that is the side you have the partial DVT on and so it obviously is related to that, but it is not related to that at all, in fact the pain is not by my jugular vein in general. I actually went to the doctor for this reason just to ensure it was not something serious and they determined that it is not related to any veins, lymph nodes, or glands. And there is no visible inflammation. Basically it just hurts and they assume it is just muscle or nerve related, which is most likely true. The thought is that because I had a central line in my neck and that is considered a traumatic event to the neck, the muscles and nerves are still dealing with recovering from that experience, especially since the pain comes and goes throughout the day and isn’t constant and then will disappear for a while. So it’s most likely my nerves saying fuck you and eventually they will get back to normal after a few more months, at least that is the thought. So during the pain episodes they want me to take ibuprofen 3 times a day to help with that. I guess this is super common with people who have a central line installed for cancer treatment as well, it’s just something that people never discuss.
Now one would think that I am just having bad luck in this regards, but apparently this actually is a fairly common issue that people have after treatment. Ironically this week someone posted about same experience on the HSCT veterans group and numerous people chimed in as well and said they are experiencing the same thing. Some people have had ultrasounds, x-rays, and MRIs to determine what is causing their pain and everything comes back fine, so it really seems to be the issue of your nerves and muscles just taking time to heal up from the treatment. There is also the thought that when you have the line in your neck or even the sub-clavical line that you spend a lot of time laying or sleeping on the opposite side of your body which in turn gets your muscles all out of whack, which can in turn irritate your nerves, which then take a while to get everything all straightened out again. For some people it’s on the side that their line was in, just for how they slept or held their head the whole time with the line in, for others they have pain on the opposite side of the neck, just because of how they had their neck positioned. Sounds like that for most people it can take 6-18 months to go away. So while this is not listed on the “side effect” sheet that always gets posted, it really seems like it occurs with many people and should probably be listed, but it appears that many common side effects are not listed on the sheet and I think it is because they don’t want to scare people off from having the treatment. I have seen veteran’s posting that they don’t want to post about their recovery or side effects on regular HSCT pages because they don’t want to scare people off from getting the treatment and then several people flat-out lie on the groups about how wonderful their recovery is going when they are really have a lot of bone pain and other issues happening, but whatever. But when it comes to my neck if the pain keeps up and doesn’t go away after another 2 weeks, then I’m supposed to follow-up with my doctor and perhaps do a scan on my neck to see if there is something else underlying. But a lot of the pain I am having does seem to be nerve pain, so really there isn’t much that can be done for that.
So other than my neck hurting off and on throughout the week, the week itself wasn’t too bad. I’m not having a whole lot of other side effects, hot flashes and chills are back a bit more this week. Nothing extreme but it adds some excitement to the week I guess. Seems like when the temperature gets below about 70 then I just get cold and have to put on heavier clothes, this also seems to be a very common side effect after treatment, looks like at least 90% of people have that issue after treatment, sounds like that dissipates after about 6-12 months. But I prefer the cold over the heat, so it’s not a huge deal for me. Then the fatigue issues I was having the prior week have really gone away this week. I’m sleeping a lot better at night as well. But really the sleep issues I have, happened pre-HSCT as well, so it’s not unusual for me. I really haven’t had any bone or joint pain during my recovery, with the exception of a few days at the beginning, I know for some people they don’t have any at all, some people have it pop up at the 3-4 month mark, and others have it from the start. It’s really hit and miss. One gal I was treated with has it pretty bad, that really seems to just depend on the individual person. I’m hoping to continue to avoid it. As for improvements, really that seems to be about the same. My balance seems to be improving more all the time, but that’s about it.
As for the rest of my week… I was very excited to see that Dollar Tree started stocking their Halloween decorations for the year. Being that I am not a religious person I’m not big into most holidays. Really I feel that most holidays are just horribly over-commercialized and most people do not celebrate the real meaning behind any holidays in general, especially Christmas. It’s all about gifts and decorations and trying to outdo each other, sickening really. And then the fact that basically every holiday is nothing but pagan traditions that christians have taken over and refuse to admit, just flat-out entertains me, but whatever. But I do like Halloween, the decorations are just fun, in fact I used to leave some of the decorations up year round because they are awesome and I’m classy like that, black roses for the win!!! But each year I do spend a couple of dollars adding to my Halloween collection. But I do have 2 signs that I feel are very fitting for me, they may be up year round, just because….
I really didn’t do any fun outings this week, I’m pathetic like that. Actually the real reason is that while most of my allergies went away after HSCT treatment, one still hung on apparently… I’m allergic to kochia, also known in some places as ragweed. And it is in full pollen right now in my area. Now ironically this plant is native to Russia….so it is an invasive species that is super prevalent all over my area. It really is the devil…but my goats love it so their pasture is kochia free, however many of my neighbors have large quantities of it everywhere on their properties so when the wind blows, the pollen comes flying in and makes me sneeze and produce ungodly large quantities of snot, makes me super attractive let me tell ya! So I’ve spent a great deal of my time inside the house. It’s been really hot this past week as well, so it hasn’t been too bad. The weather is supposed to cool down this next week and hopefully the kochia will finish up its season so I can go outside again.
But since I’ve been cooped up indoors I have been fixing doll and barbie hair, mainly princess hair, because it’s all about princesses in this house. Obviously not for me, I despise pink and purple and all things princessy, but my oldest enjoys it, so I go with it. I think I have memorized every disney princess movie… But when it comes to disney princess related dolls I must say that the movie Tangled is appropriately named….Long hair on dolls = tangled mess. Really disney needs to have more princesses with shorter hair, just saying…Now I’m a frugal person and would never buy any of these dolls brand new because A) they are massively overpriced and B) I like shopping at thrift stores. When you can get dolls or barbies for $0.50-$1.00 at a thrift store, it’s a much cheaper way to do it, or some stores where you can buy by the pound, that’s an even better way to buy kid’s stuff. But in buying at thrift stores it is rare to actually get a doll or barbie that has nice hair, most are a somewhat mangled tangled mess, most likely why the parents got rid of them in the first place. I guess if you have money, throwing out toys isn’t a big deal, but I prefer to not throw away stuff unless it is beyond repair. So this week my big task was fixing Rapunzel’s hair. I really wasn’t sure if the hair on this one could be fixed, it was a rat’s nest, but for once the doll came with clothes, a rarity for dolls coming from Deseret Industries, for some reason that thrift store only sells naked dolls and barbies, really not sure what they do with the clothes as they never bag them up and sell them, but whatever… So the entire process from start to finish took about 2 hours, with about 1 hour of it actually combing out all the mats, but she ended up turning out quite nicely. I tried to make the hair look somewhat like the movie just because I knew a braid would be far more practical than free-flowing hair. I however have no idea what I am doing when it comes to hair, but it works.
So as you can tell my week has been pretty uneventful. Maybe next week will be more exciting. The county fair is this week, but honestly this county puts on the worst fair I have ever been to. It’s overpriced and just has nothing there and really is a disappointment, last year they hardly had any animals there at all and the rides were horrible, my oldest said the fair was horrible and she didn’t want to attend again, hahaha. The disturbing thing is the rides are literally the same rides they had at fairs when I was a kid, 30 years ago…..Just doesn’t seem like those would be the safest rides anymore, but what do I know. Plus those rides are nothing but disgusting germ magnets, need to disinfect your child after each ride. Then they even charge a ton more for the one concert they do, all other fairs in this region of the country include the concert in the price of fair tickets. Usually the concert consists of burned-out country singers from the 80s and 90s that nobody cares to see, probably the only acts the fair can afford. But they refuse to bring in any rock groups because that is deemed as too offensive and not family friendly. I don’t understand that one. This year the concert is Sawyer Brown, actually a country act from my childhood that I actually don’t mind and would consider attending, but they charge $25 per ticket….I can pay that same price to see them some other time at a casino across the Nevada border and that includes 2 free alcoholic drinks and requires people to be 21, so therefore no screaming children to contend with… Yes I am one of those people, if I am going to pay money to see a concert, I do not want to contend with screaming children.
So that was my week, we’ll see what next week has in store. But here’s a closing picture of the sunset taken from the car last weekend.