February 27, 2010
Time for an update. I had chemotherapy in-patient again from Saturday-Wednesday. This time I got a lovely dose of Methotrexate, which wasn’t half as bad as the Adriamycian and Cisplatin combo I had last time. I was actually awake and coherent during my stay, which was probably bad because I was bored out of my mind for 5 days. I tried to occupy my time with reading, writing, and wedding planning. I go back in tomorrow for yet another Saturday-Wednesday stay and then again next Saturday-Tuesday. Having only two days home is a bit depressing. You never know how much you miss your own bed, being able to sit on your porch, or just sit on your own couch until you’re stuck in the same white walled room with beeping machines hooked up to you for days on end. They even let me out early, my levels were .1 over but I was begging them at that point! I told them to give me more stuff to pee (lacix, I believe it’s called?) so I could flush that folic acid out of my system! I was up every 20 minutes tripping over the power cord, my poor nurse was having a nervous breakdown from me!
I’ve reached the point where I’m having mini meltdowns. Callie talked to me on the phone in the hospital and cried and asked when I’d be home. It broke my heart. She’s far too young to understand the severity of the situation, which in a way, I’m thankful for. But, at the same time, it hurts to know that she’s upset when I’m not here.
Today I attempted making grilled cheese and had a mini freak out because I could hardly stand up long enough to do it. I was such an active person before all of this happened. I just sat on the floor and cried because I was just so tired. Poor Brandon and Callie were bewildered as to why I was on the floor crying, swearing under my breathe about grilled cheese. I’m glad they put up with me, I’d certainly think I was insane. At least I didn’t burn the sandwich.
I think that the realization that this is my life until at least September has really hit me. And after April, I’ll be in physical therapy from my knee replacement and tibia replacement, which is like a double whammy with chemo. Everyone thus far has commended me on my spirit and positive outlook…I’m trying not to lose it but, it’s just difficult when you literally feel ill almost 24 hours a day.
There is also the dealing with “looking like an alien” as I call it. I was upset when my hair fell out, okay with my leg hair no longer growing (one nice perk!), but not so okay with my eyebrows and eyelashes falling out. I’m ordering some “real human hair” (I hope!) eyebrows for the wedding and will don some fake eyelashes. Other than that, I wear my glasses around a lot so dirt doesn’t get into my eyes. 😦
At least this hospital stay I’ll have my wedding invitations to work on. My oncologist okayed the date since it will be on my 3 week break between my last pre-surgery Methotrexate chemo and my surgery. So, April 10th is the day!
February 19, 2010
I go in for my next dose of chemo tomorrow, that’s of course if they call on time. Last time they had me waiting around for two days and then they called me in. Moffitt is a very, very busy cancer center. This time I’m having Methotrexate. I should be in the hospital about 3 or 4 days, hopefully no more than that. I then get a week off, do it again, another week off and then a dose of the dreaded “red devil” Adriamycian/Doxirubician and the Cisplatin. I can only hope that I get no more fluid build-up around my heart from the Adriamycian. My chest hurt so badly the last time I had it I thought I was having a heart attack. I now have to have an echocardiogram after each cycle to make sure it doesn’t get any worse.
In other news, Brandon and I are trying to throw together a last minute wedding. Truth is, I want to be able to walk down the aisle. If we wait until after my limb salvage surgery, we’ll have to wait until sometime next year for me to be walking again. Also, in a way we’re doing it “just in case” anything happens. I’m very positive I’ll get through this but, you never know what could happen. We’ve been wanting to get married for years but, finances were always short and health insurance was an issue. Since I turned 23 last year and could no longer be on my dad’s insurance, I had to switch over to COBRA. So, it doesn’t matter if we’re married or not now. Finally, after 5 years I’ll be able to say Brandon is my husband and not fiance!
Our family has really pulled through, we are very blessed to have them. Everyone is chipping in for the wedding and it makes me want to cry. They have already done so much for us and now want to ensure that I have a beautiful wedding. I am very, very lucky.
I’m excited but also worried about doing it last minute. We’re only inviting family and close friends, so we know almost everyone will be able to make it. I’m planning on doing it April 10 or 11, my white blood cell counts should be higher then, since I’ll be about 2 weeks between chemo treatments.
I went dress shopping today and fell in love with this dress. I had a hard time finding one because so many are strapless now. I needed something that would cover my port in my chest. I was also lucky enough to find a beautiful headband and veil that fit perfectly on my wig. Anyway, here is a link to the dress I got. It’s vintage looking, lace, and champagne colored. David’s Bridal is being so nice in working with my on my alterations since I have so little time and I’m sick a lot. I’m thankful they understand.
So, things are well. Wish me luck tomorrow. I’m hoping the Methotrexate doesn’t have as harsh of side effects as the Adriamycian and Cisplatin do!
” Laugh as much as you breathe and love as long as you live. ” – Author Unknown
February 18, 2010
Yesterday was a bit difficult for me. I knew this day was coming and actually overdue since I’d been putting it off. I got my hair cut into a short bob last week to make the transformation less dramatic. Still, even with cutting it, it was a bit heart breaking.
This week my hair started to fall out, a lot. I’ve had to clean off the bed every morning, the shower drain has been getting clogged, and my hair thinned out so much I had to don my wig the other day when we went out. My head was actually hurting from my hair falling out, it was so sensitive I couldn’t even touch it. I’ve been wearing scarves and hats so my hair wasn’t falling out all over the house but yesterday I decided enough was enough and I finally got it shaved. My head feels very strange and cold. I don’t quite feel comfortable enough to go without wearing a hat, scarf, or my wig out in public but I’m going to try and go au-natural in the house…as long as Brandon doesn’t freak out. 🙂
Callie and my mom were with me when I got my head shaved. Callie got a bit upset, asking if we could put it back on, but I think she’ll get used to it after a while. She was so worried about the lady cleaning up all of my hair and kept asking “Will they clean up the mess? It’s messy!”. She cracks me up.
Anyways, I’ll be brave and post a picture. Being bald is nothing to be ashamed of. I know it’s cliche but beauty is more than skin deep. On the upside, it takes me much less time to get ready now that I only have to do my makeup. Also, not shaving my legs or armpits is an added bonus. I think in a way this experience is just opening up my eyes to the fact that society puts so much emphasis on a woman’s beauty or a man’s good looks and tries to fit everything into such a small sliver of what’s acceptable. I thought I would care if people stared at my bald head or my head scarves but honestly, I don’t. I’m still me and I still feel like me, that’s all that matters.
In other news, I discovered that my chest pain is due to pericardial effusion, or fluid around my heart. Right now, it’s a small amount so they are just going to monitor it after every Adriamycian cycle I receive. Of course, I have to get one of the “rare” side effects of the chemo!
Other than that, I’m doing well. Today I felt very sick but hopefully tomorrow is a better day!
“Laugh as much as you breathe and love as long as you live.” – Author Unknown
February 7, 2010
So, I’ve been out of the hospital since Tuesday now and I’m not going to lie, I still feel pretty crappy. I tried to prepare myself as much as possible for my treatment but, I still think I wasn’t quite expecting to get hit this hard. I like to consider myself a pretty active person but honestly, I’ve had an extremely difficult time getting out of bed since I got out. I ventured to the grocery store today and felt myself winded after 5 minutes. Brandon and Derek had to go get a wheelchair for me, I just couldn’t walk. My mom jokes that she knows it’s bad when I don’t even care about my make-up or hair when leaving the house, which I don’t. It just takes way too much effort now that I’m so tired…which says a lot for me. Anyone who knows me knows that I rarely go out without trying to look decent!
As for the chemo itself, I don’t remember much. I was sleeping throughout most of it due to my nausea medicine, which was great because the less crappy I remember feeling the better! I vaguely remember some TV shows on the History Channel but that’s really about it.
My hair is starting to fall out, as well as my eye-lashes. I have a feeling my leg hair will be the last to go…drats! I have my wigs to cover my head, as well as my hats and scarves, if I’m not too lazy to do that too, haha. People may see a scary, bald Jamie!
Other than that I’m okay. Just trying to adjust to feeling tired and sick a lot. They said I should start feeling better sometime this next week, so here’s to hoping!