Thursday, August 21, 2008

Chemo Three-mo, Genetic Test Results, Fuzzy Head, Etc.

Hello out there! I keep kicking myself for not updating more often. A lot of the time, nothing is really happening, and then something happens that makes me too busy to write, and then more stuff happens and I have to write a lot!


Chemo Three-mo

Well anyway, I had my third chemo treatment on Tuesday, and that went just fine. They gave me half the dose of the Benadryl, but I slept through the whole chemo process anyway. When I was finished, however, I was less groggy. But after a fun-filled weekend with my SF friend, I was pretty tired and sickly going into treatment. After, I was just plain exhausted! They've started infusing the chemo into me at a faster rate, which means I don't have to be there for so long. So that's nice.

I've noticed some trends in my side effects, now that I've done it three (!) times. On Tuesday, I'm tired and groggy from my medicine, and sooo thirsty. The nurse gave me an extra bag of saline to try to help me get a head start on hydration. I get tingling on my scalp, from my elbows to my fingers, and from my knees to my toes. This is particularly annoying when I try to go to sleep. I haven't been sleeping well on Tuesday nights, which makes for pretty lame Wednesdays. I feel pretty good on Wednesdays, though. And I try to take it pretty easy because I'm still scared of having to go to the hospital again. Thursdays are kinda rough and I feel extra tired and very prone to getting sick. Then once my energy levels pick up, I've noticed I have a low grade headache for most of the time. Treatment really isn't that bad, but I never feel great anymore, and it's like I'm running at 65-87% all the time. I'm noticing a little bit of what they call "chemo brain," which is being unable to focus and remember some stuff. It's annoying, but at least now I have an excuse for being sorta spacey! All in all, it could be way worse.


Genetic Test Results

On Monday, someone called from my oncologist's office to tell me I have to take antibiotics because they found some sort of bacteria growing in my urine test. I guess it's a bacteria that some doctors would treat and some would let go, so I take it that it's nothing serious. I just have to take a pill every 8 hours, which isn't the most convenient, but then again, what do I have going on? Anyway, the guy also wanted to tell me that I would have an appointment with my oncology nurse to discuss the results of my genetic test. I sorta felt the air suck out of my lungs, but ended up just saying OK.

When I hung up, I realized that I would have to think of the fact that my results were in but I wouldn't know them for an entire day. That would drive me CRAZY! I hate waiting for any results! So I called back and asked if anyone could talk to me that day, and the guy said that usually the nurse needs to tell you information regarding the meaning of your results. So that was a bummer. And then, and before I was ready, he said, "But I can tell you that you were negative for the mutation." I wasn't ready to hear the results right then, but since the result was good, I was sooooo relieved! Finally, some good news!

A negative result means that the lab didn't find any mutations on my BRCA1 or BRCA2 genes. The significance of this is that my HOBC (Hereditary Ovarian and Breast Cancer) risk is "significantly reduced," though not as low, probably, as that of the general population. Which means I can keep my ovaries and don't have to rush to have a family! YAY! It also means that I won't pass on any genetic mutations to my children, which is a relief, given I am able to have any. The nurse did tell me that if I were to have daughters, they'd need to have mammograms in their early twenties. Usually they say daughters of younger breast cancer patients should start getting mammograms about 10 years before the mother's diagnosis, but in my situation that would mean at the age of 15, which is pretty ridiculous. I hardly had anything on my chest at the age. Actually, I hardly have anything on my chest now, which is part of why I find my breast cancer unfair. I mean, I didn't even get to take advantage of the damned things, and now one is sick! There's still a chance that I do have a genetic mutation that scientists are currently unaware of, however, and I think that chance is around 16%. Anyway, if my result were positive, I would probably have to have a mastectomy. So I'm glad it wasn't positive, although I'm keeping in mind that I may still have to have a mastectomy. I can't get my hopes up too high because then it makes it so difficult to get bad news.

I really thought my test was going to come back positive. I am so glad and thankful that it didn't! Thank you God! What a relief. Seriously. But then, I'm left with the question "Why did this happen?" But that doesn't bother me too much because it's kind of a dumb question. The answer wouldn't really change the situation, so there's no point in dwelling on the "Why Factor." Although I suppose it would give a certain satisfaction to know why. Anyway, a negative result is most useful when someone else in the family has had the test performed. Given that I know absolutely zippo about my biological family, I can't benefit from that information. I'm sort of wondering if I should try to start tracking down any biological family I can just in order to learn more about my family health history, especially any occurrences of cancers. But that sounds like such an arduous task, and it honestly entails quite a few other issues, ranging from how my parents will handle it to how I'll handle it. I mean, I don't think much about that part of my life, but if I were to start finding information on my biological family, I may as well get all my questions answered. But am I ready for that? Nah. But would knowing a family health history be helpful? Probably.


Fuzzy Head

The Head Shaving Party went really well. I had a glass of wine, which I probably shouldn't have. I think it made me a little more emotional than I would have been otherwise. I got a little teared up when I first started cutting, and then I flat-out cried when I saw my fuzzy head. My sister insisted that I cut her beautiful and long ponytail off so she could shave her head too. I told her she shouldn't because she was about to start student teaching and high school is brutal enough as is. But she put her foot down, saying that she feels like I'm all alone and I shouldn't have to be, and that this is the one thing she can do with me so I wouldn't be so alone. I really wasn't feeling all that alone, but my friends told me that it'd make her feel better, so we went for it! So now we're two Korean girl baldies! And phew, we both have nicely shaped heads.

In the end, I'm so grateful that she did it. I don't feel like such a freak when we're out together, though I'm a little self-conscious when I'm out with other people or alone. Susan loves her fuzzy head because it's so much easier to take care of (that aspect is aaaawwwwesome). She thinks it's unfair that women have so much hair maintenance to do, while men can just shave their heads and no one bats an eye. She says she feels liberated! I don't like mine much though; I miss my loooong hair. Every morning at first I was surprised to see my fuzzy head in the mirror. I'll get used to it, but then my fuzzies will probably fall out, and I'll have to get used to that. But so far none of my hair has been falling out. It should be anytime now. In a way I hope it starts to fall out so I can get used to the actual baldness thing, and so that I know I didn't shave my head for nothing! My sister's boyfriend said I look better with a shaved head than I did with hair (mixed feelings about that one...) and my ex-boyfriend (he came for a visit too, and took me to chemo this week) said I look hot without hair. Hmmm.

I will get the video and photos of the party up soon, I promise! I'm being such a slacker! The video needs to be edited and I don't know how to do that, but my sister does, so we'll do to it. Sorry!


Etc.

I'm still really wanting to go to Las Vegas for Labor Day to see the Peacemakers. I'm totally obsessed, and this has been my big RCPM year. But it's only 10 days away, and my sister seems to think it might not be as fun as usual because I'm not exactly in the same position as usual. Definitely not drinking as many Mexican beers or tequila shots as usual, which would be too bad because a good Peacemakers show really lends itself to beers and tequila! I'd just want to rest and relax by the pool, eat some good food, and see the show. A two-day, one-night trip. But I don't want to do anything that will get me sick, so I'm hesitant. Plus I have no tickets or reservations, so I'd have to get all that done like... right now. But I do think planning some stuff like small trips and visits from friends, etc., will help the time fly by. Giving myself things to look forward to and do will make time move a little faster, and I can think of things as "in two treatments, I get to...". So I think I'll work on planning some fun little things.

So three Taxol treatments down, meaning I'm 25% done with Taxol. And a little more than 2 weeks down, meaning I'm a little more than 10% done with treatment. And 3 chemo treatments down, meaning I'm done with 3/16 actual treatments, which is some sort of percentage but I don't feel like doing the calculation. So we're making progress! And next week, I get to meet with my oncologist. She'll hopefully do some measurements and tell me how she thinks I'm doing, which will be more helpful than the nurse's measurements because the oncologist felt the original tumors and the nurse didn't.

Anyway, this was long, so anyone still with me is a saint. I really appreciate any and all people and friends who are taking the time to read this nonsense! And if you know someone whom you think would care (especially in Winter Park, because I left in such a hurry), please pass on my blog address! The name is easy to remember cuz I really do hate cancer!

2 comments:

Susan said...

Did you get any info on the EKG yet?

Unknown said...

Hey Carrie-
I know it's been a long time since we've talked. I heard from a friend through another friend that you had cancer. I'm sorry that it took something like this for me to talk to you. I feel terrible.
However, after reading your blog, I'm happy to see that you are doing better than some other people I've known who have gone through the same thing. You seem to have a lot of tenacity and strength.
Reading that Susan shaved her head with you is amazing. I'm glad that you have family and friends by your side. I'm sure you have tons of support. I would also like to extend mine. I know we haven't talked in awhile, and I take full responsability for that, but if you ever need anything, or just wanna chat, I would love to be there for you. I wish you the best of luck and a swift recovery Carrie, and I look forward to reading more on your blog.