Day 70

I just got home from clinic and it was the quickest appointment we've had yet!  It probably helped that we were there an hour early too. 
Anyway, the good news is that the doctor is lowering my dose of Prednisone (steroid).  Once I'm completely off that my face should go back to normal which I'm really looking forward to.  Right now I have 'moon face' caused by the Prednisone redistributing fat in my body to my cheeks and jowls.
The bad news is that the IV I was supposed to be on for 2 weeks, then was extended to 4 is now going to continue for another 2 weeks.  I still have the virus active in my system so I have to continue the medication longer than expected.
Kendall got more attention than I did at clinic today though.  He's been sick for the last few days, so they were more concerned with him and what he has to make sure I don't catch it.  He has a low grade fever and has been back and forth with sweating and chills.  He saw his family doctor who told him it was just some kind of virus and that I should be fine.  My doctor took it a little more seriously and did a test on him to confirm exactly what kind of virus it is.  They did a nasal swab that they told Kendall 'wasn't pleasant'.  The 'swab' they used was long and thin and went in through a nostril all the way down to his throat.  The look on his face when it went all the way down was hilarious!  The things we do for love.  So hopefully by tomorrow we'll know what he has and either be able to treat it or they'll give me something that will prevent me from getting it too.
That's all the updates we have for today.  Back to clinic next week and hopefully nothing eventful happens between now and then.

September is Blood Cancer Awareness Month

Please help by sponsoring me in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.

On October 20th I will be walking with my family to benefit all 90,000 people affected by blood cancers in Canada.  All those that will be diagnosed every 34 minutes, And those, who every 72 minutes, will die.

Click here to sponsor me in my walk.  Every little bit helps.

Thank you. 

                                                         

Day 59

Well, it's been an eventful couple of weeks... When I last posted I had great news about not needing Winston and getting my hickman line out.  Change of plans. 

Kendall and I had a nice Labour Day weekend planned.  Friday in Grand Bend with his parents, then Saturday in Goderich with my family.  While we were in Grand Bend on Friday I got a call from my doctor.  Apparantly I have CMV.  This is a virus that most of us have in our systems living dormant, however in people with comprimised immune systems it can cause serious illness.  My doctor wanted me to come home to start treatment right away.  So, first thing Saturday morning I was back at the hospital to get my first dose of medication.  Luckily, I hadn't gotten my hickman line out yet, so I'm not getting poked with needles all the time and after they made sure at the hospital that I didn't have any reactions to the medication it can be administered through IV at home.  What was supposed to be a two week course of meds though is now looking like it will be four weeks.

Other than that things are moving along as expected.  Hopefully there won't be any more major complications but I'm just taking it one day at a time.

Day 44

I'm awake early again, as I have been every day lately.  Not sure where this has come from as I was never a morning person, and it's certainly not from Chelsea!  I'm glad to be up early today though to watch Robin Roberts final show on GMA before her stem cell transplant from her sister.  She looks amazing and she has brought so much awareness and inspired so many people to volunteer as donors.  Good luck Robin!

I got some good news at my clinic appointment this week... Winston is out of my life!  I no longer have to be tied to an IV every day at home.  My skin is getting a lot better.  It's still not cleared up, but is finally starting to go away (after almost 5 weeks).  And thank you to my doctor for quickly getting the government to approve coverage for $4000 worth of drugs that I needed.

My energy level is still incredibly low.  I slept pretty much all day yesterday.  It does go up and down and I've been able to get out of the house a little, but the ups still aren't very high at all.

I'm almost halfway to the 100 day mark!

Light the Night Walk

On Saturday, October 20 my family and I will be walking in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.

Please click here to view our team page and sponsor us for the event.

http://my.e2rm.com/TeamPage.aspx?teamID=338321&langPref=en-CA&Referrer=http%3A%2F%2Fwww.facebook.com%2F

http://youtu.be/4g-XsCTYY8E

Day 29

I've been home for a couple weeks now and things are overall better than they were when I left the hospital, but my days are up and down.  My energy level is pretty low, but I have been able to get out of the house a few times. 

I have needed IV hydration and potassium at home, so I have my very own Winston in my living room and a nurse that comes to hook me up every day.  This lasts about 4 hours each day and will hopefully be able to stop soon.

my morning coffee

Another issue I've had is my skin.  I've had a reaction to one of the drugs I was on which gave me a rash all over that a week and a half later is still lingering.  I have another rash on my chest that may be Graft VS Host Disease.  It was biopsied yesterday and I should have some more information at my clinic appointment next week.  I have had some numbness in my hands and feet that comes and goes and my skin feels so raw that it hurts to get in the bath.  My lips are dry and cracked and nothing will moisturize them.  And by far the most painful issue is yeast infections in my underarms.

Things are slowly getting better and I know I just need to be patient.  It feels like it's been a long haul so far, but I'm only 29 days in and have a long way to go still.  I'm just taking it easy and reminding myself that all of these issues are temporary and I can get through them.

Day 18

I've finally been discharged from the hospital.  I'm still not feeling all that great, but a lot better than I have been.  Over the last week and a half I have had all kinds of issues.  My throat still hasn't gotten better, I spontaneously vomit (no sign of nausea though) and I overall just don't feel well.  But it's so good to be home!