When most people wake up in the morning, they crave a big glass of hot, black coffee because it helps them to get going. Me? Well I've never been a big coffee drinker, more of a tea drinker really, but here lately, I wake up thinking to myself, "man I wish I could get my hands on a bag of saline or a quart of blood." Who says that? Even I think that's weird. Nevertheless, there is a reason my weird mind thinks this. When I wake up most mornings, I feel so dehydrated, week, nauseous, and lightheaded. It feels like my body is drained of all fluids and I need to pump them back in me. It's a feeling that even water can't make completely go away. It's just one of the many side effects of Gleevec.
Just to recap, Gleevec is a breakthrough cancer treatment specifically for CML (Chronic Myelogenous Leukemia). It's a targeted therapy meaning it only kills the 'bad cells' which isn't as hard on the body as normal chemotherapy. It's more than just that, it’s what will allow me to live past my 31st birthday. As I've mentioned before, prior to 2001 (when Gleevec first came out), the life expectancy of someone who was diagnosed with CML was 5 years. When I say that, it still sends chills up my spine. I can't imagine if my doctor told me I only have 5 years to live. And not just any 5 years, 5 years of chemo, bone marrow transplants, infusions, treatments, bad health, and pretty much living in a hospital. But there is this pill and I don’t have to go through that. But nevertheless, it isn’t like just popping a Tylenol or Claritin pill. There are still side effects I have to deal with and am still learning to deal with, and this is my journey 3 months into it.
Do you know those girls who can stay out all night, not get any sleep, and still look great when they just wake up? My friend, Summer, is one of those girls. She’ll wake up with last night’s makeup on and it still looks perfect, and her hair still fixed perfectly. What the French toast?! There is nothing cute about me in the morning. I have the darkest circles under my eyes and my hair is the definition of a “hot mess.” I have ‘rough night’ written all over me, even if I slept for 12 hours straight. But that’s just me, and I embrace it. However, now, its worse thanks to this medication. What’s worse now is my face swells up oh so bad. The medical terminology for this is called edema, or fluid retention. I call it the Princess Fiona effect. If you’ve see the first Shrek, you know what I’m talking about. For those who haven’t, let me recap. A spell was cast on the beautiful Princess Fiona that turned her into an ugly ogre when the sun went down. Not calling myself beautiful or ugly, but that is me in a nutshell. Luckily within an hour or so it goes away. One of these days I’ll show you guys a full head shot of what I look like first thing in the morning, then a couple of hours later, one day. :) Until then, you can get the idea by looking at a picture of just my eyes right when I wake up, and then a couple of hours later. My eyes have rolls. Rolls!
Moving on. Something else I’ve developed since I started taking the medication is anxiety. I thought I always have had anxiety, until recently. Now I really know what anxiety feels like, more specifically anxiety attacks. Something as simple as watching a suspenseful movie or some idiot cutting me off on the road makes me have an anxiety attack. My heart races and I feel like I can jump out of my seat at any second. It’s a horrible feeling. I can’t concentrate, can’t think straight. And they last for hours. It’s like nothing I’ve ever experienced before.
And then there is the side effect that aggravates me the most:: extreme exhaustion. I’ve always been a ‘tired’ person. I took daily naps from the time I was born through high school and would still do so today if I had time. Because of everything I’m involved in, I don’t get much rest, but the tiredness is manageable. It’s never stopped me from doing anything. Now, randomly, I will get a feeling of exhaustion that’s on a whole different level. Most times it’s after a full day, but sometimes it’s in the mid-day out of the blue. It’s not one of those “drink a red bull and your fine”. It’s a “lay down right now and rest or you are going to get sick or face plant your keyboard”. I’ve never ever taken a nap on my lunch break. I have some friends that do and would always joke about it. Insert foot in mouth. There are some days I have to lay my head down while I’m at work or I won’t make it through the day. Sometimes it takes all I have to hold my head up so I go to my car, lean the seat back, set my alarm, and sleep for about 20 minutes. I don’t wake up feeling completely refreshed, but I can function again. This happening in the evenings seems to be more common.
Example: This Sunday my family and I went to Nashville to see Shrek On Ice, have lunch, watch The Rockettes Christmas Spectacular, and check out the Christmas lights at the Gaylord Opryland Hotel. (it was all wonderful btw) We left town around 10:30am. The Christmas Spectacular started at 4:30. Half way through the show, that feeling hit me. All of a sudden, I became completely exhausted and could barely keep my eyes open. It was mis-er-a-ble. As soon as the show ended, I went to the car to lie down. However there was no time for a nap as we had other things to do and while walking around, I felt lifeless. My cheeks felt flushed, I felt like I could throw up, and just wanted to go to sleep.
Then there is the flip side. Most nights, I toss and turn with insomnia. No matter how tired I am, I can’t seem to get good, quality sleep. It’s like I can’t win for losing.
The best way to describe how this medication makes me feel is it’s a cross between being hung over and being pregnant, which is not only two of my least favorite feelings in the world considering I only gained 17 pounds when I was pregnant because I was sick the entire time, but it's also like a slap in the face considering I can’t be either right now. Not that I want to have any more kids right now in my life, but I can’t even if I wanted to. And I can count the number of drinks I’ve had on one hand since I started taking this medication. Not that I’m a big drinker, but I do enjoy an occasional glass or two of wine. I can drink, but my body doesn’t like it so much. Even just one glass of wine can make me feel much worse in the mornings if I don’t drink enough water or get enough sleep. Most of the time I don’t even bother because it’s not even worth it. Did I really just say that? Sighhhh.....
I’m not saying all days are like this. I have good days and bad days, and luckily more good than bad. The bad days are usually a result of me over doing it the day before, not drinking enough water and not getting enough rest. While the simple solution would be not to overdo it, and get plenty of rest, unfortunately my life doesn’t allow for those things so easily. It would require me to cut back on a lot of what I do, what I love to do, and it’s so hard for me to accept that. So hard that some days when I’m feeling miserable and it makes me late for work or miss class or anything else, I will just lay in my bed and cry. Not over how I feel physically, but how I feel emotionally. I just want to be able to live my life like normal and feel good. I know eventually I will have to give in and adjust my life since this is something that I will have to deal with for the rest of my life ... Maybe I am partly in denial. I always say I’m okay with having cancer; I just don’t want it to affect my quality of life. That’s like saying I don't mind walking out in the rain but I don’t want my hair to get messed up. It’s inevitable. So I think once I finally accept it, and I think I am starting to, and adjust my life, life will be more smooth sailing for me, even if it’s not the way I had planned it to be.
With alll of that being said, I try to complain as little as possible. There are days I want to post on FB about how miserable I feel, but I refrain. Who wants to hear that? I love it when I hear people say “you look good!” or “you don’t look like someone who has leukemia.” That’s how I want to be. I never want to be known as the girl who has leukemia. I want to be known as the girl who lived life to the fullest, no matter what life threw her way. Furthermore, I don’t ever want any pity. I don’t deserve any pity. When I find myself complaining about what I'm going through, I feel completely selfish, and guilty. Even though this medication has side effects that interfere with my daily life, it gives me life, and allows me to live my life. I remind myself to look at the other end of that spectrum. What if there wasn't this medication? Or what if it were Talon? I have some friends who are dealing with that ‘what if’ as I type this. Their daughter, Brooklyn, was just diagnosed with stage 4 Neuroblastoma. It’s truly heartbreaking, and put’s life into perspective.
Update:: I went in for my 3 month checkup a couple of weeks ago. More tests were run to check the progress and the results show that the medication is working! The medication should kill the leukemia cells in my body, and control it from progressing, and it seems to be doing just that. The goal is to be in ‘remission’ next year, and so far, I’m on track! For those of you wondering why I put quotes around remission, see below.
When
Am I in CML Remission?
The term "remission" isn't
the same in CML as it is in other cancers. "CML patients often don't refer
to themselves as 'in remission' or 'not in remission,'" Roboz says.
"They'll tell you much more specifically what their cytogenic and
molecular responses have been."
Here's what each CML response means:
- A complete cytogenetic response means that no cells with the Philadelphia chromosome can be found in your blood or bone marrow.
- A complete molecular response means the PCR test can't detect any of the bcr-abl gene in your blood. Most people with CML don't have a complete molecular response. They still have a tiny amount of the bcr-abl gene in their blood. This is called a major molecular response. Doctors still consider this to be an excellent response.
- A complete hematologic response means your blood cell count has returned to normal, and tests don't show any immature white blood cells. Also, your spleen has returned to a normal size if it was enlarged.
Unlike with other cancers, a full response,
or "remission" doesn't mean that you're cured and can stop treatment.
Even if tests can't find any trace of CML in your cells, the disease can
relapse.
(www.webmd.com)
(www.webmd.com)
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My next appointment with my
oncologist is on Feb. 15th . More updates to follow then. Sincerely,
Princess Fiona
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