It has felt like forever since I last posted. I am sorry for the delay. It’s been on my mind everyday, but I guess the good news is it means life is starting to happen again.
I was finally discharged from the BMT clinic in Calgary 3 weeks ago, and have started seeing the team at the Cross Cancer Institute here in Edmonton. I can’t even adequately explain how much easier it is to have local appointments. I will be forever grateful for the amazing nurses, doctors, and support staff, I met in Calgary. I wasn’t prepared for the tears bursting forth as I said goodbye to them at my final appointment. (I ended up having to go back anyhow, I can assure you the second goodbye was far less messy!)
As expected, the road has been a bit bumpy. I always seem to be creating new challenges for my medical team, but we are definitely moving in the right direction. I’m still treating the pulmonary embolism with daily injections. I am also still having a bit of trouble still with my racing heart, so I have been referred to a cardiologist here and we will investigate whether it is connected to the embolism or just a result of the years of Prednisone use.
I have also developed some Graft vs. Host Disease. I started getting a wee rash a few weeks ago, and it quickly spread. Here is a photo. It was a very angry rash, not comfortable at all, and it just kept spreading.
Sorry if that is too much info for some!
After a biopsy, and another trip to Calgary, I was started on high dose steroids, yet again. Ugh. I was so happy to hear it wasn’t measles, or some thing I may have passed on to someone else. I also felt blessed there was a treatment because the itching was starting to make me crazy. At the same time, we were scared. GVH can be a terrible thing, and can put the entire transplant at risk. But more good news was on the way. The GVH showed up well after the typical period for acute GVH., which would tend to indicate chronic GVH, a far more troublesome diagnosis. Despite this, the medical team is fairly certain it is acute GVH. Which can be treated and dealt with. I really do think this is because I was so fortunate to have such a great stem cell match in my sister, Christi.
So I am slowly recovering from this latest bump. The new meds have made me ravenously hungry again (Better than the nausea on the flip side!), and I am a little irritable. Ok, I’m a lot irritable. Thank God for my supportive network of people who understand my need to hide in what I call my “blanket fort”, and try not to “poke the bear” unless absolutely necessary. It’s probably best for everyone involved. I posted this photo on Facebook one day (pretty sure I should be banned from social media sometimes). This guy says EXACTLY how I feel!
One of the new meds I’m taking to handle the GVHD is cyclosporine, which further reduces my immune system, so I am now battling a respiratory infection among other minor issues. I keep hearing from people who wish I was just “better”, and I guess I do too, but here is the thing… I DO feel better!! These are things I can totally deal with, and that light at the end of the tunnel is getting bigger and closer all the time. One of my doctors explained it so well the other day. She said that once I am released to “home”, even though we KNOW there is no light switch that flips to say I am “fixed”, I tend to put that expectation on myself at times, as do others. Not in a bad way at all, just wishful thinking. I know how kind all of the hearts are surrounding me, and everyone wants me fixed yesterday. If it helps with expectations, she said it would be at least a year before we can expect the “normal” switch to start flipping.
For now, I will keep my eye on the light.
Peace & Love xo
Trish
Ps. Just one more thing. I picked up a new wig the other day. My hair is really starting to come in now, but patchy. If you see this girl, it’s me! Stop and say hi 😉❤️
Trish G 
Dear Trish – Thanking for helping us to understand what you are and have been going through. You are a very inspiring person and in my eyes…you are a hero! Love and Hugs! xo
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I am so happy you are back in Edmonton and happy to hear from you .lookling at your picture you are a beautiful woman .you have gone threw so much just hang in there girl l still want to see the happy dance .Take care of yourself and God will do the rest.So happy for you, God bless you and your family
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Trish what a beautiful post. I am so happy you are feeling better despite your new set of symptoms- it really reflects just how unwell you felt before! You are such an inspiration- a beautiful soul. Thank-you for sharing your incredible journey 💜
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Thanks for the update….. I will confirm that it definitely takes a year…… Blessings to you on your road to recovery. I’m so happy for you and your family!
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Dear Trish> It is so good to hear from you. I have kept you in my prayers. So glad that you are feeling better even though you do have problems. I had to laugh when I saw the carton. I had liked it several weeks ago and shared. You are blessed though in so many ways. I am so glad you are home, where you can get more love fro Shayne and your children. Keep the faith and never let go of it. I love you like you were my daughter. Go into your tent whenever you feel like it. God Bless you. Polly
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Thank you for your update. You are an inspiration to all who are facing similar challenges. Each day is a step forward & soon, soon this will be behind you. Best of luck in your recovery.
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Soooo good to see your blog again…your sense of humor is most refreshing and definitely one of your greatest strengths that helps YOU and those of us who find it so easy to feel sorry for ourselves at times.
Peace and Love to you and your wonderful support team of family and friends.
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So glad you are back home again, it truly does help you to recover faster when in your own home ! As i told you folks at the start of this trek it’s a long road with lots of twists and turns but in the end well worth the journey. My son just celebrated 6 years free and healthy but that year following the transplant was pretty rough at times ! So glad for you, i wish you and your family a Merry Christmas and many more to follow !
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Oh Trish, you’ve been on my mind lately and I had hoped that the reason you weren’t being very visual was that you were out there, busy with all things that make you happy: a hubby, two wonderful kids, a bunch of friends and family…you know – LIFE!!!!
It’s been a chore but surely you are getting closer and closer to the end of the battle and all the little challenges and will once again enjoy all things special and beautiful to you.
Kudos to you for your inspiration to all who are following you and special kudos for allowing us, just fellow humans along for the ride!
Keep up the good work, onward and upward, always, just one foot in front of the other until you’re once again running through meadows of wildflowers and toadstools!
P.S. Your new wig is fabulous and I can see a hint of a little devil in your sparkly eyes which is great to see. You still haven’t lost your fight and your way – you go girl and if I’m lucky enough to see you out and about I will for sure say a great big Hi!!
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Thank you for the update. I am still saying daily prayers for you. I wish for you to have this all go away…unbelievable how the human body works. Stay strong. You are allowed to be grumpy sometimes. So glad u have family and friends to make u smile tho. Lots of love and good health to you.
Hugs, Kim
Sent from my Samsung device
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So happy you are feeling better. My husband was on high doses of pred for his GPA so we understood your comic very well! Take care and continue to improve!
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thanks for posting Trish……sending hugs and good wishes. you and your family continue to be in our prayers.
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