So I know I went a month without writing, and now we get two posts in two days. There are a couple of reasons for that, the first, I would like to write about more of what I'm going through for those that have asked for more detail. Second, I actually have energy today and haven't yet felt sick from the chemo- I worry that once that starts I'll rather lay in bed or my posts would probably be depressing! Though I have felt dizzy, it could be from the chemo, the antiemetics (anti-nausea drip), or one of the 10 pills I took today! Probably a combination huh?
I inserted a picture of my bald head, I don't think I've put one up yet on the blog? I know there will be a lot of kind thoughts and comments from you good people out there, but let's be honest. My head is creepily white, and HUGE! Not to mention the "hair line" I have. My giant head "looks like an orange on a toothpick!" :) It definitely helps to wear scarves and hats! I have been asked if it's hard to shave my own head. Truth is, no! Just a little shaving cream while I'm in the shower and take the razor and go for it- with the grain of course. Then I use my hands to feel where I miss. Best part is, I only have to do it once every couple of weeks or so. Only 3-6 months until it starts growing back...
Yes, the next picture is odd, but I want to show you what's going on up close! My eyebrows are almost completely penciled in (on the bright side, I can get any shape I want!) and my eyelashes are just about gone... on the left eye I have three bottom lashes left! It's to the point where I wonder what's better, 3, or none?? I can't bring myself to pull them though... They'll fall out soon enough!
One goal I've had through this all has been to do my makeup every day, no matter how crappy I may feel. So far, I've kept the goal! True, it's usually just a quick job, but I really feel better afterward. I look pretty washed out (and sicker) without makeup on. One picture you will never see on the blog is me with zero makeup and no hat... I look way too much like my brothers!! Though they are very good-looking men, I would rather not be one!
Jake, Zack, Mike, Jesse The Bassett Boys |
About my hospital stay so far: It hasn't been too bad! I have been getting chemo for a few hours (since last night) and I haven't felt too many side-effects. Right now I feel pretty good- which makes me dread the side effects I know are coming... I've had a few people ask what those side effects are, and I usually try to stay away from the real down and dirty part of the chemo experience- it just seems like most of you wouldn't want to hear all that, and it can be a downer. So if anyone wants to avoid it, just skip over this last part of my post!
I should start to experience over the next few days nausea, vomiting, and diarrhea, though the vomiting is usually controlled well with the antiemetics. I'm not too concerned about this part, it's been part of the treatment already and hasn't gone too far out of control. So far with the help of these drugs I have only vomited once! I think that's pretty good for the amount of chemo I've been given.
From what I've heard and been warned about, the most painful part is the mouth and throat sores that come up four to eight days after the last day of high-dose chemo. They can be so painful that patients stop eating and can need feeding tubes! The sores are caused by the chemo attacking all fast growing cells (hair, skin, mouth throat and gut lining). Not only are they painful, they can cause infection, which I have to be EXTREMELY careful about after the transplant. My immune system will be gone, and I will have no white blood cells to fight off any bugs. I have been taught good oral care is essential to help prevent mouth sores and control them once I get them. Even though I don't have them yet, I rinse with a special rinse four times a day, brush with an extra-soft toothbrush, and use a mild toothpaste (children's strawberry, yum!).
Other fun things that happen occasionally, but not often, are bladder irritation, liver, lung, and heart damage (most of which is mild and reversible). Another occasional side effect is confusion- which I have already experienced with previous chemos, but hope it doesn't get too bad this time (also reversible).
The biggest worry and most common event are the infections. I will be taking an anti-viral, antibiotic, and anti-fungal to help prevent them all, but it sounds like it's pretty much accepted that all patients will get some form of infection during their stay or especially during the first 3-6 months post-transplant. I am told to watch for any fever of 100.5 or greater and call immediately if it happens. Odds are high that I will be readmitted to the hospital at some point over the next year- I think I read 50% of patients will have a return trip. I'm sure that would be depressing, after going home to have to come right back! We can hope and pray that I will be in the 50% of patients who don't have return visits!
There are of course a lot more potential side effects, and more long-term side effects, but they aren't as common as the ones I listed above, so let's not look at those! If you want to know more it's easy enough to Google it! I think I'll always have a worry about getting one of these side effects or the possibility of relapse but I know that life is still beautiful, and it needs to be enjoyed.
Hi Tessa,
ReplyDeleteBest wishes to you as you continue your journey with the "longer" hospital stay. Here's hoping any side effects you may experience will be mild and manageable. I think of you every day. I'm grateful you will have Adam with you nightly as you journey on together. God bless you.
Skip Dad; aka "Papa Skip"
You're so brave and optimistic and patient and positive and beautiful and special and kind and forward-looking and more. I hope this last phase goes as smoothly as possible.
ReplyDeleteAgain... so positive. Love ya girl.
ReplyDeleteHive fives! You are my hero.
ReplyDelete