Saturday, May 14, 2011

The Beginning of the First Setback Since Being Diagnosed with Leukemia

I have just completed a full week on 70 mg of Sprycel, instead of 140mg. I have more energy and am now only sleeping 12 hours a day; no nap needed! This is very good news, as my very favorite cousin is flying in from Maine, I am picking up my son and his friend for the weekend and then we will all be going to visit my folks. Great stuff planned for the week, I am so excited to be able to spend some time with my cousin, as I haven’t seen her in over three years.

I was supposed to pick up my son on Friday afternoon, but Murphy got involved and that did not happen, so I made arrangements with my sons’ father to meet me half way Saturday morning. I got up earlier than normal so as to make the 11 am pick-up time. I got a call from my son and was told that his Dad was still on the golf course. This, under normal circumstances, would not be a problem. Under my new CML circumstances it was.

You see, I had planned my entire day, in such a way that my body would be able to handle all that was required of it. It was my biggest day yet; I had planned to pick up my son and be back home in time for a 2 hour nap, thus allowing me to drop off my son and his friend at a concert in Hollywood, pick up my cousin at the Fly-Away, visit with her for the evening and then still be coherent enough to pick the boys BACK up after the concert, late that night. I knew it was going to be a very long and taxing day, but thought that with squeezing in a nap, I would be able to handle it.

My Cousin Kathy and My Mom
Since the pick-up time had been delayed by several hours, and I was already up and ready to go, the nap was eliminated from my plan. I was irritated and concerned. I really considered playing the leukemia card and making his dad bring him all of the way to me, but I didn’t. Looking back, I should have done just that. By the time I pick the boys up and get back home, I have just enough time to feed them and get back in the car to drive them into Hollywood for the concert. I turn around and head back home. I have about half an hour before picking up my cousin. I am so excited to see her that I couldn’t have slept even if I had tried.
Seeing her at the Fly Away brought tears to my eyes. She has a heart of gold and is one of the most thoughtful and dearest people that I know. Of course we have so much catching up to do that we are both going a mile a minute. We yakked until approximately 11 pm and I figured that I should head down to get the boys. The last thing that I wanted was for the two of them to be standing on Sunset Boulevard at night; alone. My cousin was gracious enough, despite being on east coast time to come with me. By this time I am feeling really, really tired and a bit shaky.

Driving through the canyon and down Sunset Strip at night was a challenge. There were cars everywhere and I wasn’t sure what to do. I finally found a parking space in front of an outdoor cafĂ© a few miles from the House of Blues; and waited for the boys to text me when the concert ended. I let them know that we were there and they let me know that the last band was playing. While we were sitting there chatting and waiting for the boys, I could feel my body getting more and more shaky by the minute. I texted the boys again and it was 10 minutes before they replied. They said that they were on the last song and it would be over in about ten minutes; I was close to tears and told them ten minutes, no matter what. What I didn’t know was that they didn’t have reception where the concert was actually being played and that they were running in and out of the concert to stay in contact with me.

Those ten minutes finally passed and I cursed my body for failing me and for having leukemia. The boys had made plans to go to this concert long before I had leukemia and I didn’t want to be short with them for something that was out of their control. They got into the car so excited and full of youth that I didn’t have the heart to complain to them too much; I told them that I was sorry for being a bit quiet and irritable, but that I just wasn’t feeling well. I could hardly wait to get back home and into bed. Listening to them brightened my spirit, but my body just would not get on-board.

Of course they were starving and wanted to drive through Tommy’s, so I sucked it up and got in line. I literally felt as though I was going to crumble at any moment. I cannot ever remember feeling quite this crappy, it was as though my brain was willing my body to just keep going. Finally we got home around one a.m. and I was in bed less than 5 minutes later. I slept straight through until 11:30. Today was going to be another big day; we were driving back to Palm Desert to see my folks. I felt a bit drained, but thought that I could make the two hour drive and then take a nap. Everyone, load up and let’s get this show on the road!


  1. a Mommy that wants to make everyone else happy-Im with you-As a nurse.....that knows your body needs every ounce of strength to fight this thing......Im going to play the nurse card! Next time-call a cab- a shuttle.....whatever-tell his father AFTER his golf game to drive ALL the way-you really do need that rest....and if you do not take care of one else will and short changing that body of yours while its trying to fight this crap is not allowed!!!!!!! OK.....nuff said?? Love you!

  2. I agree with your friend Jill. You need all of the strength & rest you can get to fight your battle. Yes, God is doing His part; you do yours. When my husband was ill it took him a long time to let go of his pride & ask for help. The thing is, he would help anyone at anytime when he could because he loved helping people. Those people we called on were more than happy to help us, which he finally came to understand. Let people know your needs. A wise lady once told our Bible study group that we should not answer for others; give them the opportunity to answer for themselves. You never know how God will lead them.

    One other thing my husband & I learned is that when the situation is serious (ours was) we had to make sure that when we asked for help, others understood exactly what they were getting themselves into. We learned that the hard way when people we were counting on didn't show up because they didn't understand.

    I know we don't know each other except in passing on the dance floor, but I just felt led to share my thoughts with you. If they don't apply - Please ignore them.

    God often brings you to mind. I know many are holding you up before the King of Glory everyday.


  3. Thank you so much Debby and Jill, sometimes it takes a scolding from others, especially other givers, to hear the message loud and clear. It is just so hard allow your body to control your heart.
    I AM learning!

  4. As an almost-14-year CML survivor, I know the value of being kind to yourself. As a 12-year Gleevec survivor, I want to let you know that this will get better as time passes. Your body is being taxed as it rids itself of the dead cancer cells your Sprycel is killing. It's got a big job. As soon as this process is stablized, life will smooth out. In the meantime, take it easy, and feel the hope that these new drugs offer us all. :) Virginia from Claremont

  5. Thank you, Virginia, you are an inspiration!

  6. Michele - oh yes, next time tell his father to do ALL the airport driving! Weigh that out, golf game - vs. - Leukemia... YOU WON... You needed the rest! He would have understood, even if you are ex's, you share a son, there is a mutual life long bond to each other there, even if that is the only level playing ground... Yes being a Mom means we CAN do it, push ourselves, but - right now, please - ASK for what you need... YOU are so precious, and fighting so hard, a simple "ask" and many times "ye shall receive"! For the times you do NOT receive, I go with your friend on the shuttle/cab theory... Your son knows you aren't up to par, no feelings would be hurt for you to say you just "cannot" do something on any given day... I am glad to enjoyed talking with your cousin, it's so important, that endless chatter with someone we have so much history with! Enjoy your visit with your folks, but enjoy some good REST too! Love to you always! Julia


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