It Just Can't Be Easy, Can It?

Happy New Year Everyone! My vacation was a 'break from all medicine'. That's right, I stopped taking the Gleevec, December 22nd because my skin broke out with tiny little bumps all over. First my face, then my arms, back and legs. I was sent to an Internalist at MD Anderson and he wasn't sure what to think. He had me taking Benadryl at night and Claritin in the morning but, that didn't change anything so, I was instructed to stop taking the Gleevec pill. As soon as I stopped taking Gleevec, my bumps started to disappear but they were replaced with an itchy rash that comes an goes. Three weeks later and I still can't go 24 hours without the rash popping up somewhere. The good news is, my energy has been up, I feel good - in every other way.

Christmas was nice! Lot's of family came into town! We ate a lot, played games and had a good time. Do any of you recognize these faces? They are all grown up!







Thanks to my cousin Marcia and her dad, we got to go horseback riding.




Now, I have to admit I have enjoyed this break so much that I dread moving forward. First of all, 20 years ago, I had a similar thing happen with my skin when my body decided it would be fun to be allergic to Penicillin. It happened a couple weeks after starting the medicine, and it was present weeks after being off of it. Because of this time frame, Doctors weren't convinced it was the Penicillin until it happened again...but quicker. I ended up on a Benadryl drip in the ER to clear it up and have stayed away from Penicillin ever since. I guess I dread the fight with the Doctors to figure this mystery out when I think I have it solved and they aren't convinced. Here I go again with an unusual, rare and mysterious condition that is enough to annoy me and puzzle my doctors. Sadly, this time, it delays treatment of my original problem. Let's not forget I have lesions on my brain stem that are going untreated right now.

So, what does this mean? Dr. Nick doesn't want to continue any treatment until we resolve this. I just didn't think it would take so long to clear up or to figure out. It means, more doctor's appointments. Monday, January 17Th I went to an appointment at MD Anderson, with an Internalist. They biopsied the rash and have sent it away for testing but don't really know what it is. I had stopped taking the Benadryl and Claritin Friday night and the rash got worse. In the meantime, they told me to go back on on Benadryl - but, full force...Let's hope I can stay awake in the middle of the day. It takes at least 48 hours to get the lab results back. Until then, I am only taking Benadryl.

I am not sure what the next step will be but, when I do start back on some kind of treatment, I look forward to the little shuttle cart from the parking garage to the front on MD Anderson! Ah, the little things in life that make it worth while!

A Day at the SPA - "Special Patient Appointment"

My day at the MDA SPA was filled with good reports, great times and super happy memories! It was everything I imagined it would be and better! My spirits have been lifted!

Aunt Kay picked me up at the crack of dawn and we made it to MD Anderson with plenty of time to prepare for my Watsu Brain Scan. I brought my purple silk robe and fuzzy slippers to keep it cozy. Then as I laid down on the table, I placed cool cucumbers on my eyes and enjoyed some music, as the magnets started their clanking and the Watsu MRI began. It was the best MRI ever!

Then off we went to the Indigenous Echo-Cardiogram. (I should have left my robe on for the picture.) This is the machine they use. I've never had one before but it is just like an ultrasound except it is of the heart. I got to see my healthy and strong heart at work. I could even spot the catheter from my port pulsating in my ventricle! That was wild and a little creepy! I didn't realize it went straight into my heart.

The best part was saved for last...a Mental Relaxation Therapy Session with my Greek Oncologist, Dr. Nick. We discussed my last couple of months on Cytarabine, today's test results, and the road ahead as he gave me the best manicure I have ever had.

Basically, everything looks good! My heart is healthy and strong. My brain is still there! (David wants to see the pictures for proof.) The lesions are stable (not bigger/no new ones) and my blood tests show all is normal! My liver enzymes are even back to normal! I can actually end the day with a glass of wine. As for the change in meds! It is official. The infusions of Cytarabine are over! I did 5 months and that is all my body can handle. I will now be on a Chemo pill "Gleevec". Dr. Nick likes this choice of medicine better than the last one and predicts I will be much more comfortable. It is not the one he described as a nuclear bomb going off in my immune system like I first thought. If fact, when I asked him about that he said, "GLEEVEC has a good sounding name "Gleeeee" with a little punch at the end "vec". The Nuclear bomb like medicine he was talking about this summer was more like "AK47" but, I can't remember the actual letters and numbers he said...you get the idea though. AK47 sounds like it's gonna come in, blow everything up and leave me for dead on the cold floor...scary.


This is the nurse that has to listen to all my calls...and she is still smiling!


This is my new manicurist!

I know Dr. Nick was just being himself, but I don't think he realizes how much he lifted my spirits today! For him to play along with my little game that I was spending the day at the SPA did more for my mental state than I even expected. I know attitude is half the battle and I try to keep a positive outlook on life but, I guess I didn't expect it to work so well. I truly feel stronger, more optimistic and now "GLEEFUL!" I believe with all my heart, I can make it through the second half of the treatment knowing I WILL beat this thing and leave it all behind me! I still have a long life journey ahead. This is only a mere bump in the road.

After a long day at the SPA, one needs food! So, Aunt Kay and I had a nice Asian meal at Pei Wei's on HWY 50. Thank you, Aunt Kay for sharing this day with me. It was so amazing.

"Time for a Change. - Change in Meds"

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?