1 Year Of Rezurock
It’s been a while since my last update, which ultimately means things have been going well. No more prednisone (for now), just Jakavi and Rezurock daily for the past year. This combination seems to make my skin happy. Below are a few photos of my biggest areas of concern. My chest/torso is no longer tight…
CGVHD: Skin Sclerosis
My body has a love hate relationship with my stem cell donor, and prednisone. The prednisone doesn’t seem to be doing it’s job this time around. After several months of 60mg a day, I feel some improvement in my mobility and range of motion. Appearance wise it is by far the worst I have experienced.…
Welcome Back Prednisone
Well it looks like I’ve welcomed back an old friend into my life. With my cGVHD of the skin intensifying, my only option at this point was a daily dose of 50mg of prednisone. A month of this high dose should do the trick. Then comes the slow weaning process that follows. With the prednisone…
A Never Ending Battle
Love the skin you’re in they say. I’m trying my best but right now, I just can’t. Shortly after my Hematologist gave me the ok to wean off of the immunosuppressant (Jakavi) my CGVHD flared up again. Quite possibly the worst I have ever seen/felt. I am feeling it the most in my shoulders and…
7 Years Post Transplant
Every milestone I reach I still can’t believe it, I can’t believe I’m here. Each year seems to get better than the last, despite navigating a global pandemic. I have slowly been weaning off Ruxolitinub for cGVHD and have noticed certain areas becoming more stiff and pigmented than others. I feel the musculoskeletal pain creeping…
1 Year Of Ruxolitinib
It’s been a year since I’ve been prescribed Ruxolitinib (Jakavi) for GVHD of the skin. My skin and joint pain have continued to improve over the months. I have been able to discontinue a few medications as well. I no longer need Sirolimus and I’m currently down to 1mg of Prednisone, soon to be 0!…
Same Story Different Year
SUPPORT TEAM CANDACE! As a young child in elementary school, I remember the joys of hearing “today there will be an assembly” over the speakers. The best assembly by far was the Terry Fox Run. Same man, same story, year after year. No matter how many times you hear the story he always had a…
6 Months: Ruxolitinib
Before: Ruxolitinib for cGVHD (Click to see before photos) The following photos are 6 months after taking Ruxolitinib (Jakavi) for chronic graft versus host disease of the skin, joints and muscles. Although my skin may not look much different to the eye, the feeling of relief I have received from this drug is amazing. The…
COVID-19
My thoughts and feelings about the novel coronavirus, not that anyone asked. Working in a hospital on a regular day is a risk. I am putting myself in danger everyday I walk through those doors. As many people panic over this new found virus I can’t say I’m that worried, yet. My boss called to…
I Think They Call That PTSD
Just over six years ago, Dr Lee walked into my room on 3B, about to give me the worst news of my life. This is a day I don’t like to remember. As sick and near death as I was you don’t forget a day like that. I now work on this floor of the…
Before: Ruxolitinib For CGVHD
I was very reluctant to take these photos let alone share them with anybody. I have been battling with chronic GVHD of the skin for close to 2 years now. After trying just about every medication/ treatment option with no relief, I think it’s safe to say Ruxolitinib is helping! I have been taking 10mg/…
5 Years Out
On June 13th I was finally able to say it’s been 5 years since my stem cell transplant. They say that once you reach 5 years, your original disease is cured. What better way to celebrate than a trip to Nashville with my family and relatives. I wish I could say everything in my life…
The Inevitable
As I sit here in the resource room at the Princess Margaret Cancer Lodge I can’t help but think of all the other places I’d rather be right now. Every Wednesday a volunteer driver from the Canadian Cancer Society picks me up and takes me to my photopheresis appointment. Wheels of Hope I spend the…
Photopheresis
I have officially started Extracorporeal photopheresis (ECP) treatment for my skin GvHD. Every Wednesday and Thursday for the next 6 months or so I will go to Toronto General Hospital to receive treatments. The treatment itself only takes 2 hours, as long as everything goes smoothly. I felt slightly lightheaded and tired during but no…
Immunocompromised
I’ll start with some positive news. On November 29th I was given the keys to my first townhouse! I am officially the last one to leave the nest. The fact that I am finally able to do this on my own makes me feel incredibly proud. My second night in my new place however, not…
Graft Vs Host Disease
4+ years post stem cell transplant to treat acute Leukemia.. My hematologist finally decided it was time to stop my immunosuppressant Cyclosporine. About a month after, chronic GVHD of the skin appeared. My skin has been sensitive ever since my cancer treatment but nothing ever this severe. My entire body is covered in a red/brown…
4 Years Out
Going to keep this short and sweet.. June 13, 2018 I turned 4 years old. My Dad took me for ice cream at the Dairy Bar. I am feeling better than ever, back on a low dose of daily prednisone to try to combat this never ending GVHD. After 4 years, I no longer have…
Some Good News For A Change
It’s been over a year since I’ve updated my blog. Reading my most recent post was hard. It brought me back to this time last year, that feeling of hopelessness and sadness. That feeling that nothing was ever going to get better in my life. For the first time in 4 years I can finally…
What Doesn’t Kill You
Two years and eight months post stem cell transplant. What does that look like? Never in a million years did I think my life would be like this. That’s the problem with having a stem cell transplant to treat Leukemia. I’d be lying if I said I didn’t still think about it every waking day.…
2 Years Post Transplant
A visual recap of when I first started my journey to now celebrating my 2nd Re-Birthday:
Goodbye Summer, Hello Fall
September is here! Most people get sad when summer is over. For me, I’m so glad it’s ending. I can honestly say this summer has been one of the best summers of my life. Imagine not having to worry about work or school. Being able to do whatever you want, whenever you want. The weather…
1 Year Post Transplant
Better late than never…Happy one year post stem cell transplant to me! On June 13th, 2015, it was exactly one year since the day I received my donated stem cells from my anonymous unrelated donor! This is a huge milestone and means so many positive things are next! This week I was finally able to…
Volunteering
I am proud to say that I have recently been doing some volunteering in my spare time and I love it. There is no better feeling than volunteering for a foundation you are passionate about. In the month of April I was able to help out with the daffodil sales and raise money for The…
Prednisone: Friend Or Enemy
I’ve been doing extremely well, thanks to prednisone. I have been on it since late February. My doctor has already started to lower my dose, slowly. At first he said I would be on it for 2 years. Then a month later he says 1 year. I see my doctor again on May 5th so…
More Drugs
Everything has been going so well for me lately. Since January and once my shingles cleared up things really haven’t been better. I was expirencing extreme bone pain so I was prescribed prednisone. I have been on it for just over a month now and my life has changed. I have little to no pain…
7 Months Post Transplant
Recovery sure is a bumpy road, as I had been warned. Since Christmas I’ve been doing well. My shingles cleared up pretty quickly without too much pain. I have a bit of scaring left from the scabs. My blood work has been coming back great. I finally had my liver biopsy to rule out GVHD. I…
Shingles
This past Saturday I celebrated my 6 months post stem cell transplant! You know what I got in return? Shingles. I had been feeling unwell all week prior to finding out. I was more tired than usual and feeling nauseous. I felt something was off but I just figured it was normal aches and pains. Last Thursday I…
Happy Thanksgiving
This year I have ALOT to be thankful for. Of course I’m thankful for my amazing friends & family, but I’m more thankful for a person I don’t even know. Big thanks to my anonymous donor, for saving my life & giving me a second chance! I hope one day I can properly thank you.…
Emotional Rollercoaster
I’ve noticed a HUGE change in myself within the last few weeks! Finally no more nausea and vomiting, thanks to gravel ginger tablets. My energy levels have improved drastically too. I’m moving around more, taking next to no naps and spending more time outside my house! I went shopping for some new clothes for the…
Day 98
I haven’t posted in a long time because I hate writing negative stuff on here but that’s just it..I don’t really have anything positive to say. Everything has been going well, all my blood counts are perfect on paper when I go to the hospital every Tuesday. But I don’t feel well. I know fatigue…
Day 45
I can’t believe I’m almost half way through my 100 days, here’s to hoping the last half flies by. I was so anxious being in the hospital, thinking about coming home, but now that I’m home I’m kind of disappointed. It’s not like what I thought it was going to be, like before I went…
Recovering At Home
It’s been forever! But I was in no state to do any sort of writing for last month or so. I’m home now after a LONG and trying 40 days. I’m not exaggerating when I say, hardest thing I have ever gone through. Having a stem cell transplant ain’t no walk in the park. My…
Prep For Stem Cell Transplant
It’s finally here!!! June 5th I was admitted into the Juravinksi Hospital to start my preparative chemo and radiation. I had a HICKMAN line inserted which was pretty nerve racking but once it was over I realized it wasn’t that bad. They gave me a mild sedative before so that helped! The site is a…
The Best Day Of 2014
Yesterday was Sunday which means sleeping in and relaxing by the pool. I put on a swimsuit for the first time this year and actually went in the pool! It’s already 78! My Aunt Barb stopped by to visit and bring me a gift. She bought me and iPad, best Aunt ever! It’s going to…
My New Look
Yesterday was my last day of appointments before my transplant! First I met with the Thrombosis doctor regarding my Fragmin injections. I will need to continue taking them for about a month after my transplant. Don’t want anymore blood clots! Afterwards I met with the Radiation Oncologist to go over my radiation treatments. I will be…
The Rankin Cancer Run
What a great weekend! Possibly the best weekend I’ve had this year. That sounds weird to say. Since my last post I’ve been great except for a few days last week. My parents, sister & I went to my aunts house for dinner one night. She made so much great food & I enjoyed some drinks…
A New Friend
Part of the reason I have been feeling so good mentally lately is because of what happened this past Monday. My social worker at the hospital asked me if I would like to have the contact information of a past stem cell transplant patient. She told me the girl was a few years younger than me, was diagnosed with…
Staying Busy
Things have been much better lately! I’m feeling good. All my counts are recovering nicely & I’ve been able to get out more. I’m trying to have as much fun as possible before my transplant in a month. My sister and I drove across the border into the US to go shopping at the outlet mall.…
Unexpected Hospital Stay
How strange that as soon as I published my last post I started to feel unwell. All day when my Aunt & Uncle were visiting I kept complaining that my jaw & neck on the one side hurt really badly, like someone had punched me. I had bitten my tongue days before this and it…
Visits
My Aunt Cathy & Uncle Ron came home from Florida a couple days ago so they stopped by this afternoon. It was so good to see them. I told myself I wasn’t going to cry but as soon as she saw me she starting crying & I can’t help myself once someone else starts. It…
Consolidation Chemotherapy
This past weekend was Easter. Much different than past years. My family usually gets together to have turkey dinner but this year we didn’t. I just finished my second round of consolidation chemo last week so I’m not feeling the greatest. I should have been having my transplant by now but things got pushed further…
The Side Effects Of Chemotherapy
One of the difficult parts of cancer is not the cancer itself, it’s coping with the dreaded side effects of chemotherapy. My doctors and nurses have been pretty spot on with their predictions of what to expect. My first round of chemotherapy in January was 2 different chemo drugs for 7 days reduced 50%. My…
The Part Nobody Mentioned Until Now
Last week I visited my doctor at the clinic to find out more information about my transplant. It will be happening in May. My donor is female and he does not live in Canada. That’s about all I’m allowed to know. Seems strange that this person could potentially save my life and I know nothing…
Saying Goodbye To My Hair
It’s not going to happen to me I thought. I didn’t understand how all of my hair could just fall out. It’s a well known fact that chemotherapy causes hair loss but for some reason I thought I wouldn’t have this side effect. Wishful thinking I guess. My nurse warned me my hair would slowly start…
Awaiting A Stem Cell Transplant
With my type of Leukemia induction chemotherapy is done to destroy all of the cancer cells. This also destroys the healthy cells in your body. This is why it takes a few weeks for your body to recover after chemo. The initial chemo did it’s job and I am completely cancer free at this point.…
ONE DAY AT A TIME 