Happy belated Thanksgiving everyone!
I have so much to be thankful for!
Many of you might be surprised to know that our family went camping after Thanksgiving. It has been our family tradition for years! Under the circumstances, we didn't book a place hours away like we usually do. Instead, we booked one night in a State Park, 25 minutes from home. This way, I could go and not have to sleep in a tent. Better yet, it was 3 miles from my Mom's house! After we had a picnic by the springs, put up tents, and built a fire, I went out to dinner with my Mom and Jack and spent the night in their cozy guest room. I'm looking forward to camping this way again real soon! (thank you both)
LOOK WHO VISITED OUR CAMP SITE!
Ready for the medical update?
The 4Th and 5Th rounds of Chemo gave me a fever and intense upper abdominal pain. Blood work revealed high levels of liver and pancreas enzymes which basically meant the Cytarabine was putting other vital organs at risk. Yes, we think the treatment was working, since the numbness in my arm went away. But, as my Orlando Doctor said before starting treatment, "We're going to keep an eye on ALL of you and your over-all health. As soon as we see signs that something else is at risk, we'll change our course." So, here we go! My specialist in Texas and my Orlando doctor agreed that my side-effects have become too significant to continue with the Cytarabine; so, as promised, we are changing course. Don't worry or feel bad, this is a good thing. I had really started to feel like I wasn't going to be able to continue all year the way it was going.
So, what now you ask?
Plan "B", Chemo in the form of a pill. "Gleevec" I start out taking 1 pill everyday for about a month and then go to 2 a day. The side effects should be much less than what I was experiencing before. The biggest concerns are fluid build up on the heart and low blood counts. This is the one my Orlando doctor described as "It's like setting off a nuclear bomb in your immune system." So, the fact that I work in a school, is a huge concern. I need to be extremely careful - especially in public. I probably should not shake hands, hug, or smooch with strangers until I am all through with this thing. Boy, that takes the fun out of New Year's Eve! The sacrifices I have to make in the name of good health and a long life perplex me.
Is the port coming out now?
No, we still might need it. This is not over, I'm not cured yet, I am still in need for treatment and lots of blood work. We don't even know how long I will be on this pill form of Chemo. Anything could happen. Of course, it would be nice if this pill works out, but I have to keep an open mind so I don't set myself up for disappointment. Besides, getting the port was a huge surgery with a long recovery that cost thousands of dollars. I am not letting this thing come out that easily.
Do I do this at home?
Yes, I have the Gleevec and Anti-Nausea pills in prescription bottles and I take them at home. Now I have to admit, I will miss the week of fellowship and adventure I was exposed to with my daily trips to MD Anderson. I'm gonna have to find another way to get together with all the people I have been blessed to have accompany me these last 5 months. But, of course I don't want to throw off anybody's dinner plans either. So, if you still enjoy cooking a meal for our family once a month...we will certainly enjoy eating it. In fact, I think a "Half-Way Celebration" is in order! Does another night out at Brio's - mid January - sound good?
Have I started the medicine yet?
As I write this, I've taken Gleevec four times and I am fine. I was a little nauseous the first 2 days but not so bad after that. I am still very tired at night but that's not new. My eyes are getting really dry but that's easy to fix too, so I can't complain.
What have I have learned about myself this last month?
My tolerance for pain is too high. That's right, TOO HIGH! Looking back at that Tuesday night when I spiked a fever and had intense abdominal pain; I now don't trust my judgement. Obviously, it worked out OK and nothing seriously wrong happened but, how bad would it have needed to be for me to wake David and say, "Take me to the hospital."? Would I make that call with enough time to save my life if it was in danger? I really don't know.
What lies ahead?
I was actually in to see my nurse this last week and to get initial blood work. They are doing full CBC and CMPs weekly now for about a month until they get a feel for how it is affecting me. I still have my December 10Th appointments. I have to take off work so I can spend the day at ORMC and MD Anderson. I like to think of it as a day at the Spa. I'll start with an 8:30 AM Watsu Brain Scan, followed by an Indigenous Echo-Cardiogram, a Mental Relaxation Therapy Session with my Greek Oncologist and a Full Bali Blood Work Up. I'll be a whole new woman by the time I leave. Do you think they'd play along with me and let me pretend I was at the spa? I wonder if they'd let me wear a towel instead of a hospital gown and put cucumbers on my eyes during my MRI? Would it be too much if I asked the nurse to paint my nails? After all, life is what you make it. (pause to think) That does it! I have made up my mind. If I have to take a day off from work and spend a lot of money on myself, I am packing my fuzzy slippers, bath robe, face mask, cucumbers, nail polish and iPod with relaxation music and taking it to the hospital. Feel free to send me suggestions for my day at the Spa. :)
Now, I am looking forward to Friday, December 10Th! Wouldn't you?
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