Sunday, May 15, 2011

Leukemia Still has the Upper Hand; The Downward Spiral Continues

The drive to Palm Desert is uneventful, the traffic was good and we made it to my mother’s in record time. We ate lunch and I was done! I hit the guest room for a much needed break and a nap. The main reason for my cousins’ visit was to surprise my Mother. She hadn't seen her in a very long time and really needed a “favorite Auntie” visit; I napped and they visited. So as not to impose too much upon my parents, KK booked a room at a fancy, shmancy hotel in Palm Springs and we had planned on spending the nights together up there; girl time, just me and her. I had planned to take her to my favorite haunts for lunch and breakfast and to relax a bit at the pool.

I awoke a few hours later and was still just wiped out. Of all weeks to feel crummy; last week I felt so good. My sister came up to see KK and we sat outside and visited. I was feeling so horrible that it was challenging to even focus on what everyone was saying and I was having a very difficult time just keeping up with the conversation. It was as though I was underwater and everything was foggy, yet extremely loud.

It was becoming increasingly apparent that I wouldn’t be joining my cuz in the shwanky hotel again tonight, as I felt as though I was going downhill even further and faster than I was last night. I didn’t want to disturb her with my getting up and down and tossing around all night long. I was so disappointed and felt just terrible to be ruining our plans. We had dinner then my son and cousin both left; I had a cup of tea with my mother and went to bed. I slept 14 hours straight and felt a bit more human when I woke up.

The weather in Palm Desert this time of year (March) is marvelous, so I set up camp on the porch by the pool with a cup of tea and my computer. I had some work to do and hoped to get it done before KK arrived from the hotel. We didn’t really have any plans other than picking up my son around three o’clock, so I figured I would use my time and energy wisely and get some work done. It is so difficult to be the cruise director when you aren’t feeling well.

The three of us went to lunch at our favorite yogurt shop and I was already beginning to decline. Once again I figured it was best to stay at my mothers and let my cousin enjoy the hotel on her own. She also felt as though she might have a little something and didn’t want to pass any germs to me or my mother; especially now that I seem to be doing a good job of going downhill all on my own. What a bunch of invalid losers! I am so used to going a million miles a minute and never letting anything slow me down. It looks as though CML might win; this time.

I had a routine blood draw scheduled for the morning and also made an appointment to see Dr. Camacho. I had this long lump in my arm and it was red and swollen. When it began to swell, I marked the length of the vein with a marker to monitor its' size and or movement. I knew that it was a vein that I had had an IV in and it had become inflamed during a chemo treatment. It had been fine, but now it was inflamed; hot, swollen and very sore. It felt like a hard straw under my skin. Since my folks are in Palm Desert and the hotel and my doctor are in Palm Springs, I decided it would be better for me to drive my cousin up to the hotel so that I would have the car in the morning to get to the doctor’s; that way she could get some much needed rest and maybe even enjoy the pool.

My son rode with me, and on the way back to PD, my headlights started to dim. Next I noticed the dashboard lights were dimming, too. We had to stop at a red light and the car engine began to slow down; all lights dimming. Great, just what I need; to breakdown on HWY 11 at eight o’clock at night feeling like crap!

I push on the gas pedal and the car slowly picks up speed. After about 30 seconds we are cruising at the speed limit and praying for no more red lights. As luck would have it we hit another red light; we spit and sputter to a stop and I throw the car into neutral and put my foot on the gas. Our jump start off the line was even slower this time and I wasn’t sure that we were ever going to get going. Luckily we do and I get into the right hand lane and stay there. We were finally getting close to the turn off to my mothers and we hit another red light. I could tell that we would be toast if we stopped, so I threw caution to the wind, looked quickly both ways, and ran the light. I made a right hand turn and literally coasted into a parking lot. The car died and I forced back tears. My son said, “Great, now what are we going to do?” The forever pessimistic teenager!

Me and my son; 2008
I said, “Call your father and have him pick us up and take us to Nonny’s. I will deal with the car in the morning.”  I had had enough for one day and I was falling fast; I and this body could take no more. I was so grateful that I was driving the car instead of my cousin; talk about kicking the dog when it is down! I finally get back to my folks house at nine p.m. and my Dad says that he will get me up at 7 am so that we can get the car taken care of BEFORE my 10 am doctor’s appointment. Oh, joy……going to bed, not enjoying the fact that leukemia has the upper hand right now, this totally SUCKS!  


  1. It may "feel" like it has the upper hand Michele, because the days have been so FULL... Just curious - was it the alternator in the car? Was the vein Phlebitis? REST my friend.. Rest, so you can heal - and dance! <3 Love you, Julia

  2. Yes, Julia, as I suspected it was the alternator!and yes, phlebitis, hot compresses and the swelling has gone down, but the lump is still there!

  3. you are one strong lady, my friend. You WILL win this battle!

  4. Don't push yourself so hard this early, Michele! My onconologist has to keep telling me that I shouldn't push too hard at this stage while my body adjusts to the "new normal". Your dancing is my running, and we're both a bit slower right now. It's okay, things will pick back up, but we shouldn't try to push ourselves to the limit. My body won't let me do late nights at all, and if I run and stand too much during the day, my legs ache like crazy at night - CML rears its ugly head. And I never felt anything like that before the diagnosis, so honestly - it gets me pretty down at times knowing that it's the disease and the treatment that's causing it.

    So, I'm one-month into targeted treatment for CML and am also in the adjustment period, so I know how you feel (although I recognize that every journey is unique). Take it easy and let the pill do the trick. I can tell that you're a fighter, so keep resting, get a little bit of exercise without pushing it, and let your body get used to all of this stuff. Another long-term CML survivor told me last week that when you're this early in treatment, you have to take "exquisite" care of your body right now. You might have to delegate the 1am drives next time, LOL. :)

    I'm watching and pulling for you, Michele - I agree with the other posters on this thread. You are definitely very strong and a fighter!


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