Tuesday, December 29, 2009

No News Does Not Always Equal Good News

Christmas Eve at my dad and stepmom's house.
Hey everyone,

I know, it has been a while since I have last blogged. A lot has happened and we have been dealing with a lot.

I went to the hospital once again. This time I had a small infected spot on my skin by my port in my arm. When there is infection by a port you always have to be EXTRA careful. So, Kevin and I went to the emergency room on Monday night (December 21st). They gave me IV antibiotics and wanted to admit me overnight. I did not want to stay and really wanted to get some sleep, so I signed out against their recommendation and went home...at 4 in the morning. The next day I had an appointment with my oncologist, who in turn wanted me to go right back to the hospital and get admitted for a couple days. I was pretty devastated because this would keep me in the hospital until Christmas Eve.

I did stay there until Christmas Eve and was finally let out in time to get to Christmas at my dad's only 1 hour late. On Christmas day I had to go to a clinic and get IV antibiotics for an hour in between Kevin's family and my mother's Christmas dinner. They had me go to the clinic daily for a week until they completely confirmed that I didn't have a blood infection.

I got some tests and results. Overall my CT scan was improved. Liver tumors shrunk, more cancer cells are dead, but there were new spots in lymph nodes. My doctor thought I got the best response from the chemo, Gemzar (the stuff that sent me to the hospital with the fluid around my lungs). We decided to add the Gemzar to the chemo I already do (Carboplatin) despite the fact that I will develop fluid around my lungs. I take steroids for 2 days and then just tolerate it the rest of the time. I do have fluid around my lungs, but as long as I can breathe and am not in major pain, we just deal with it.

When I got chemo I was anemic pretty bad (low red blood count). So, the day after I had to get another blood transfusion, this time getting two units of blood.

Honestly, this chemo is kicking my ass. No need to sugar coat it. I feel horrible all the time. I have had a headache non stop since I got chemo. I never sleep because I am still waking up drenched in sweat multiple times each night. Sleep medicine is not working. My body aches. I was really nauseous before and actually throwing up, but since I stopped taking Oxycotin for pain, that has gone away. I have no energy after getting no sleep and sweating all night. I am still really skinny. 120lbs now and that's with me eating like crazy trying to not loose any more weight.

Today I went for a checkup and found out that my platelets might be extremely low. (It could be a mistake, they are re-testing and I'm waiting to hear from Beaumont) Either way, they already have me scheduled for a transfusion of platelets for tomorrow. I'm supposed to stay basically on bed rest and to not do anything in case I happen to bump or cut myself. If I start bleeding at all tonight (like from brushing my teeth), I'd be at risk of bleeding to death and have to go to the ER. 150 - 350 is the normal range for platelets and mine came back at 11. I never had this before. My platelets have always stayed in the normal range through ALL the chemo I have ever done, so I am half expecting this to come back as a mistake. I'll let you all know.

All and all, I have just been depressed. Not like this freaking cold gray weather that has no end in sight is helping my cause. I just want one 60 degree sunny day so I can open all my windows and take a short walk outside and breathe some fresh air. Uncle David doesn't know it yet, but he is getting a call soon because I need to go somewhere sunny and warm right now before I slip into a state of depression I have never seen. Some nice 70 degree LA weather might be just what I need. I'm sure my doctor would tell me to stay home, but I realize my need for a change. All I do is sit around my house. If I leave the house, I get so darn tired I race back home to lay on the couch. I am so SICK of my house. I'm SICK of my bed. I'm SICK of the smell of freshly washed sheets. I'm SICK of watching TV, but honestly, it's all I have the energy to do.

So I don't blog forever and all I do is complain. Sorry. Kind of why I haven't blogged. I usually only like to write when I have something good to say. I'll let you all know about the platelets and think of something positive to say soon. Maybe I'll have a flight booked soon and I can blog all about the sun and fresh air breezing in from Venice Beach.

Penguin Cap update - I still have all of my hair. There is no thinning at all even with the two chemos combined. I'm thinking these things really work. I have noticed my hair has a little less life in it, but otherwise it's just awesome to have hair still. I'll keep you all posted on how the penguin caps go.


  1. Shannon,
    Sorry to hear you are so tired and depressed. This weather is really getting me down too. You should try one of those S.A.D. (Seasonal Affective Disorder) light bulbs. They mimic the sun and make you feel better. You need about 16 hours of light for your body to think it is summer. That's what we do with the horse to trick them into not growing a winter coat and so we can breed them in Feb. :) I really like your blog no matter; happy or sad, funny or mad. There are a lot of people praying for you.

  2. Shannon: My heart is sad to hear of your trials. I wish I could make you feel better, be better, sleep better. You are in my thoughts a lot.

    -- Laura Ortiz

  3. Hi Shannon:

    I'm sorry to hear that you've been feeling down lately. Dre and I have been thinking about you a lot.

    Thank you for the wonderful organic changing pads and covers for Lucas! He will certainly try to pee on them but that's the only trick he knows so far.

    We'll be out at the end of March, so we'll have to get together then. In the meantime, a trip to LA sounds like a perfect remedy.


    David and Adrienne

  4. If u go to La, let me know, depending on the dates and work...I might be able to fly down and see you.

  5. Hi, Shannon:

    My son has cancer too(Ewing's Sarcoma and has completed 9 of 14 rounds of chemo), and I happened across your blog in early December. I hope you don't mind, but this stranger has been keeping you in my thoughts and prayers. I was happy to see an update from you - but sorry to hear the road has been so bumpy.

    Sometimes cancer patients and families are worried about being negative - almost as if by doing so we will invite a bad outcome - and because we don't want others to worry about us. But I think (for what it's worth) that it's healthier to let it out than to hold it in!

    Hope you get to enjoy that change in scenery, and continue to keep your hair!

    God bless,
    Marilyn Fahlman
    Regina, SK. Canada

    P.S. As he got deeper into treatment, my son has needed several platelet transfusions and done well with them. They do need to premedicate him beforehand, or else he gets hives though! Usually the sign that tips us off that his platelets are dangerously low is he will get a nosebleed.


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