Notes From Supergirl

My Diary from the Trenches

Day 106

September14

So would you believe it if I told you I was still in the hospital? Probably. Yes, it was actually my decision to stay today. They woke me up at 7 am for the neupogen shot and then started the stem cell harvesting around 8:30. It took 5 hours for harvesting! They base the length of time on your height, weight, white cell count and another level of your blood count. I had hoped that my counts would double from yesterday, but unfortunately they only went up by 1,000 meaning my total white count was 13,000 something. Under normal circumstances this is well above normal, but for harvesting purposes I wish it would have been higher. When they harvest, it ends up depleting your white cell and platelet count. My platelets dropped from the 40,000′s into the 20,000′s and my white count was down around 7,000. This number is still fine but I hope they have enough of everything to get the remaining .8 million they need tomorrow. The nurse who was doing the harvesting said that, yes, it could still take 5 hours even though they are going for a much smaller amount of cells.

I hesitate to even state the “plan” for tomorrow because, as we all know at this point, plans don’t seem to apply to me. However, the plan is to do the harvesting and then give me two bags of platelets while waiting to hear how many cells were harvested. Assuming (and boy is that a word that has little meaning right now), they get the remaining cells they need, they will remove my catheter and send me home late afternoon.

Although my tone may sound negative, I don’t intend it to come across that way. As I said, it was my choice to stay because logistically it just made more sense and saved me from sitting downstairs in the clinic all afternoon tomorrow. I’ll be far more comfortable getting a platelet transfusion in my room and not having to wake up at 6:30  am to get here. I’ll also be much happier going home without a catheter in my neck. I’m comfortable with my decision, but as I told Melly today, the idea of being home and hugging my kids all feels like a fantasy right now. I’ll believe it when it happens.

During the harvesting process, a really neat group of people came through called “Spokes for Hope.” They are cyclists – mostly cancer survivors – riding cross country and visiting cancer patients on their way to D.C. to lobby for cancer research funding. They were very inspiring. There was a camera crew with them and I signed a consent form to say it was fine to film me. I didn’t realize until later in the day that they were filming for Fox 45 News! What a lovely scene I was with two IV lines coming straight out of my neck and going into this huge, archaic looking machine. Fortunately, I saw the story on the 5:30 edition and I wasn’t included. I’ll double-check the 10 p.m. news, but I’m guessing they thought I was too scary looking for the broadcast :) I also signed a banner that will go with them in memory of my mom and in honor of my own fight. Tears, they were a-flowing.

The other little clincher I had today came about in a conversation with my bone marrow coordinator. I was asking about the flu shot and mentioned that my kids got the nasal vaccine. She looked upset and went on to say that there is a protocol that stem cell patients are not allowed to be around people who have had the nasal vaccine for 2-3 weeks following vaccination because it is considered the live virus. Needless to say, I burst into uncontrollable tears thinking that I wouldn’t be able to go home and see my kids until November at that rate. Fortunately, she went and double-checked and that doesn’t apply to people coming off of my treatment. My wonderful nurse Roseann also happened to come in the room at the same time that all of this was going on and reassured me that my immune system is strong right now and it shouldn’t be an issue. The best thing for me to do might be to wear a mask when I am really close to them for the next week. This is fine. I will take a hug with a mask over no hug at all any day.

Between the need to stay motionless, the sudden news about the flu shot and the ultimately very emotional visit from the cyclists, I was like a crazy women with PMS while going through my harvest today. The first two hours were all smiles and the last three I was crying one minute and laughing the next. The poor nurse (a very nice guy) taking care of me, was doing all he could to keep me from crying. Thank you Hecter!

I’m good, I really I am. Laying still gave me too long to think about the infinite possibilities of the challenges ahead. I need to make sure I don’t have that much time to think again. If you read this blog from Day 1 to today, I have probably used the word “hopefully” over 1,000 times. I’ve even looked for synonyms that express the same meaning to reduce my redundancy and haven’t come up with any. In any case, I will repeat myself because hope is the best thing I have to hold onto and HOPE to be home with all my boys tomorrow.

posted under The Daily Record
6 Comments to

“Day 106”

  1. Avatar September 14th, 2010 at 11:16 pm Tatiana Says:

    Whew, what a day you had, Jess! Really hoping and wishing you an easier one tomorrow, with much less time for thinking and waaay, waaaaay more time for hugging :-)


  2. Avatar September 14th, 2010 at 11:41 pm Robyn Says:

    What an emotional day! I wish I could have been there to keep you company. You’re doing great!!! Hang in :-)


  3. Avatar September 14th, 2010 at 11:56 pm Mina Says:

    Sending you lots of warm, loving hugs and positive vibes, Jess. Wanted to let you know that I am thinking about you and really hope that you get to go home to be with your children soon.


  4. Avatar September 15th, 2010 at 6:53 am Irene Says:

    I’m totally with you as you think of and feel your precious Mom’s memory! Positive thoughts, and hope to see you at home soon!!!!! Next time I’ll bring more than 2 measly pieces of cheesecake ;)


  5. Avatar September 15th, 2010 at 8:31 pm Martha Says:

    Your mom would be very proud of your hope. She had it continually. She also had the gracious acceptance that she has obviously bequeathed to you! You will be home soon, and your children will be full of hugs…mask or no mask. You will be well soon. Love, Martha


  6. Avatar September 15th, 2010 at 8:47 pm Melly Says:

    what can I say, Jess. You are amazing and inspiring! we WILL see you at home soon.