Monday, August 30, 2010

Hello Everyone! I'm still on the IV antibiotic that I carry around and have only forgotten that I'm attached to it a few times. This means I have to go to clinic everyday for them to give me a new bag and reset the pump which doesn't take long. However, Tuesday I had a nosebleed and had to stay for platelets as well. They do blood work on Monday's, Wednesday's and Friday's so I almost always have to stick around for platelets and sometimes red blood cells.

As far as the mouth sores my mouth feels much better, but my tongue and throat are still causing problems. I still cannot talk and eating/drinking is pretty difficult but we're being creative and making it work. Banana popsicles are my life saver! I mentioned before that the mucositis also makes you produce lots of thick mucous and fluids in your throat/sinuses/chest so I'm still dealing with the cough and all the fluids I cough up (okay, I'm getting too gross I will not go into any more details). With my white count being so low they say this is just going to take a long time to heal. Like I said we're making it work with eating but I still have to worry about my weight dropping and have to try to get in as many calories as I can (never thought I would have to do that).

After all this complaining, I still think I feel good. I feel like going out and doing things. We went to the grocery store Monday and the mall Tuesday and those were the highlights of my day! Not being able to talk makes that complicated but I carry around my notepad to talk to mom and Michael. In addition, my legs are still very weak. Going up the stairs is a challenge, but I'm working on it. So overall, I think things are improving, just slowly.

As far as the new drug (Revlimid) we have a few more paperwork things to do and then they will mail it directly to me. So we're hoping to get it sometime next week. Since my white count is staying down they're not really worried about the delay in getting the drug.

Hope you all are having a good week,

Wednesday, August 25, 2010

Good news! I did get approval for the Revlimid from the drug company and insurance. It is a pill that will be shipped to me and we will hopefully get it sometime the beginning of next week (although it takes mail a long time to get here).

They also put me on IV antibiotics today to try to clear up my mouth/throat sores. I really haven't seen any improvement since my last post. I'm glad to be more proactive in trying to clear these things up. I have a little "take home" pump again that gives me the antibiotic 4 times a day through my central line. I just need to remember that I am attached to the pump! I've already forgotten once after only having it for about 3 hours.

Thanks for all of your prayers, cards, well wishes,...

Monday, August 23, 2010

So I still don't have much to update you on. My mouth sores are getting better but my throat and cough are about the same. My menu now pretty much consists of: fruity pebbles, chicken noodle soup, flan, egg custard pie, and of course banana popsicles. So hopefully my throat will clear up soon! Not that I'm complaining about any of these foods but some variety would be nice.

We had a clinic visit today and we will hopefully know something about the Revlimid on Wednesday. My white count is still staying around 1 with just the Hydrea. So again things are status quo.

Other than my mouth and cough I feel really good. The downside to feeling good is that I have no excuse not to walk on the treadmill. I am still very weak - it is hard to go up stairs. My legs just don't work very well and I need to work on that. (I can hear Katie Brown and all other Physical Therapy people giving me a lecture right now.)

Hope you all have a good week and ENJOY going back to school!

Thursday, August 19, 2010

Hello! I'm glad to report that each day since Saturday has shown improvement. My mouth sores are at a point that they are manageable with Lidocaine but my throat is still very sore. In addition to mouth sores, mucositis caused by chemo greatly increases fluids in the throat. So a cough also comes along with it which irritates my throat. However, I feel like I finally see a light at the end of the tunnel as far as my mouth. Wow - I didn't know I could write that much about my mouth.

Medically, my white count is still holding around 1.0 with just the Hydrea which is good. I'm still not sure when we will start the new drug called Revlimid. From my understanding this is not a chemo drug and does not have the side effect of mouth sores!!! So I'm looking forward to it.

Hope your week is going well and everyone is having fun getting ready to go back to school :),

Saturday, August 14, 2010

Hi everyone. So there isn't much to update you on. Things have pretty much stayed status quo over the last few days. Unfortunately they haven't been the best days. My mouth sores continue to worsen. Eating and talking are very hard so I am back to my dry erase board of last summer. I probably will not take anymore cytarabine treatments and just wait on the other drug. Hopefully, I've reached the height of my sores and they will start to heal.

Much thanks for your prayers,

Wednesday, August 11, 2010

So as you may have noticed I have really enjoyed blogging lately. I've even started thinking of myself as a "blogger" and not just an "updater". Maybe a book is next (that may happen when pigs fly). Actually after 18 months of constant medical care I probably could write a book.

So for the "updater" part of this post - I had to skip my dose of chemo today because my mouth sores were so bad. I will probably have to skip Friday's as well. However, my white count was down to 0.7 and hopefully the Hydrea will keep it down and until my mouth sores clear up some and I can get on the "other drug". This is the drug we had to apply for and it does not have the side effect of mouth sores. I call it the "other drug" because I don't remember its name and don't understand completely what applying for it means but I have been told we will be approved. I've gained enough trust in Dr. Rizzieri and Therese that I trust them to put me on the appropriate drugs.

For the "blogger" part of the post I thought I would write about a weird side effect of the oral chemo pill I took a while back (Etoposide). It actually darkens your skin tone which gave me a tan. So I have enjoyed a nice unearned tan so far this summer. However it is now pealing like a sunburn and I am turning back into my very white self. This may remind you of the late great Michael Jackson. It is interesting to me that chemo is not just about nausea, vomiting, and losing your hair like they show in movies or on TV. I'm sure many of you who have had the misfortune of having cancer can identify with this. I do look at the positives of chemo as well - I have wigs that look better than my real hair, I've lost weight, and I have a nice tan.

As always, thanks for following me, praying for me, and everything you do,

Monday, August 9, 2010

I got so much feedback from my last post (mainly through emails to my dad and comments from people) that maybe I SHOULD write more often. I just thought they were boring ramblings to keep some people up to date on my health. So anyway, I thought about writing about other things besides my health. I wrote one time about the movie Julie and Julia and how she blogged about cooking through Julia Child's cookbook. I'm working my way through a Sudoku book - so I definitely don't think that would be interesting to blog about. (It's called "Naked Sudoku" and is written by one of my former professors, Dr. Laura Taalman from JMU - the "naked" part is because the puzzle is blank to start and only has clues like less than, greater than, this colored set adds up to this number, etc. - you can buy it on Amazon -here - okay I'm done being a math nerd).

However, the main purpose is updating on my health, so here it goes. I'm recovering well from my fall. It took a toll on my left knee as it was hard to bend for a few days. My face still looks wonderful as well! My mouth sores are becoming the bigger problem. They are getting worse to the point that I may need to skip a dose of chemo this week to try to slow them down. Eating is kind of like taking medicine at this point I just try to get down as much as I can and be as nutritious as possible. If you know me, this is very stressful because I love food and wish it could be something to be enjoyed and not just a necessity. In addition talking is a little hard as well. My white count was 1.1 yesterday and I received both my chemo and platelets at the clinic, so this seems to be going on track.

Since I said I would write about other things I guess I should do that. (Men may skip this paragraph.) I love my wigs! I went a year or so without really wearing them but actually going to a store and buying ones that "fit" me has changed that. I have two that I wear regularly, one is short and straight and the other is long, a little wavy, and has bangs (which I have never had). It is a little bit of a change for me. After my face clears up some I'll have to give in and post pictures of me in them (that will make my grandmother happy).

Hope you are all having a good week and as always thanks for everything you do!


PS - I hope you are all enjoying some cupcakes this month, they sound absolutely delicious and I wish I could try each of them! (BIG Thanks to Sheila and Celia)

Wednesday, August 4, 2010

So, this post could either be titled: "Amy's terrific tumble" or "Amy's stay on the prison ward of the Trauma Unit"

Let me explain, my legs have been very weak lately because that's where I've lost the most weight through this ordeal. (I love my new weight but trust me this is not the weight loss plan that you want to try out.) In addition we have an uneven sidewalk leading into our apartment. Well, I tripped, fell, and hit my jaw on the first step leading into our apartment. I am fine today I just look like I was in a really good fight. I have a bruise on my jaw - looks like I took a good left hook from someone boxing. Other than scraped up knees and elbows I'm fine though - it could have been a lot worse.

So that's the story of the fall.

Part 2: We called the bone marrow floor (the clinic had closed by this point) and they wanted me to come to the ER because I was bleeding in my mouth (with low platelets any bleeding is a concern) and they wanted a CT scan of my head since I hit it (the CT scan was fine). Well, patients that have immune system problems and shouldn't be sitting in the waiting room with all the sick people are put into the trauma unit when they are not busy by the ER. While I was there every patient who came in was accompanied by a cop and was obviously drunk. It became quite funny - one guy was describing the fight he was in to the nurse (of course he was winning). They also got a call that a stabbing victim was coming in and they were prepping for him but the police called back and said the victim had ran and to call them if he came to the hospital. Quite comical - it provided good entertainment for us while we were waiting.

I'm at the clinic now to get the full round of platelets, red blood cells, and chemo. My cough is gone and that has made me feel much, much better. Also, my white count today was 1.6 so we are still dropping! I have lots to be thankful for today that I didn't break anything. I get many cards that mention "God holding you in the palm of his hand" and this must be true.

As always thanks for keeping up with me and for everything you do,

Tuesday, August 3, 2010

Hi everyone. It has been a good week for me. Most days I have felt good and gotten out to clinic or someplace else. Mouth sores are still a problem - they do not seem to be getting any better so eating is hard and taking pills is especially hard. My cough/congestion seem to be going away though!!! They were scared that the congestion was caused by Leukemia in my lungs, but if it's clearing up that must not be the case.

I've had two doses of cytarabine with no side effects so far and my white count was 2.8 yesterday. To explain a little (I am a teacher at heart - feel free to skip the rest of this paragraph) This is lower than a normal white count should be but for someone with Leukemia it's good, because a high percentage of these white cells are cancer cells. Cancer (in any form) is fast growing immature cells and in Leukemia's case one has fast growing immature cells in the bone marrow that produce BAD white cells (called blast) that don't work to fight infection. So the fact that my white count is low shows the bone marrow is not producing those cells that fast. However, the bone marrow is not producing good cells either. (blah, blah, blah...)

So we'll continue with the Monday/Wednesday/Friday schedule at the clinic where I get my chemo and most likely a bag of platelets. We're also going to add some other drug at some point - we're waiting on my new insurance card to apply because on top of all of this I had to change my insurance to North Carolina's "High Risk Pool". I tell you this because I can't tell you how helpful my mom has been at dealing with this and the other insurance company... She's handled it all. Anyway I can't thank her enough!!! And on top of that she takes care of me while Michael goes to school.

Hope you all are well and enjoying your summer - pray my mouth sores go away!
Thanks, Amy