Tuesday, September 22, 2015

Roller Coaster

Well, what a year it has been so far.  Remember last blog I wrote?  My hematologist saying that the risk of me having another flare up was low?  Well I think he jinxed it, because I was in the hospital again a couple weeks later, my platelets had dropped to 14 (reminder : a normal count is above 150). What a roller coaster! The doctor decided to try a treatment designed to have a longer term effect- since this ITP thing was chronic, auto-immune and not a one time thing like he suspected.
The treatment called Rituxan is usually given to athritis patients, but it has shown great results in some chronic ITP patients.  The treatment is given once a week by IV for 4 weeks.  I responded really well (like suprisingly fast, the nurse was amazed!) to the first infusion and went through the treatment with platlets above normal for a few weeks.  By week 3, my platlets dropped again even on the treatment.  The doctor thinks it is too early to say if the treatment worked or not- it could take up to 3 months to see lasting results.  So now we wait and see.  Unlike with the prednisone, I feel great. The side effects, mostly from the steroids that they infused to lower the risk of allergic reactions, were short term. I sleep well and have more energy.
During my last Rituxan infusion- Smiley got upgraded to a window seat
I always thought of myself as positive person who had lots of patience. I can tell you that the past months has tested that patience to the max. Waiting on blood results, waiting to see if my body is going to respond to the treatment, waiting on phone calls.  I am also getting a little paranoid, always questioning if a new bruise is a result of a bump or if my platlets have dipped again. Through all this I am smilling. Despite the uncertainty, it is way better than the first flare up and dealing with the prednisone side effects. I am thankfull that I have an awesome support system.  I am greatfull that my family has been there every step of the way and helped me keep my mind off the purple dots and bruises and help me focus on what's important. All through this, life has handed me a few more lemons to juggle on top of the ITP but I happen to like lemonade. I will get through this and keep smiling.  The doctor is very optimistic and reassures me that there are lots of options available in the event that this treatment does not work. He told me not to worry and that is what I am trying to do.  I am now going for weekly blood test to monitor my platlets and will be seeing the doctor for a follow up in 3 months- I'll keep you posted!
A sign that I've been doing better is that I actually scrapbooked!  I should make more time for it as it is very therapeutic, espcially when scapping with my amazing scrappy friends. I made a few layout using the new Zoe collection.  I love the colors of this collection and all the coordinating elements are so fun.  So cheery!
We had to cancel a week long trip we had planned to Quebec because of my Rituxan treatment.  I was really bummed about it, but we did manage to go to Halifax for a weekend during the Buskers' festival.  We had a blast!
We also spent some time on the soccer field this summer.  I love that my daughter loves soccer so much, and she's quite good at it too!

That's it for now.  I have a few more layouts that I want to share with you- stay tuned!
I still have some idea books in stock if anyone wants one, let me know.  I am also looking for a few more people to participate in my hostess club- Get 45$ in free stuff, a half price item and all you have to do is to make a 25$ CTMH order suring 9 of the next 10 months.  For more details or to participate, send me an e-mail at joce.b.roy@gmail.com

Have an awesome day!

1 comment:

  1. Way to go girl!! Keep positive and loving your LOs :)