A week

Just a quick update on an interesting week. Friday my dermatologist shared pathology results to confirm the skin changes are Graft-versus-host-disease. She called Dr. Brown, my transplant doctor, and he immediately started me on a high dose of prednisone that afternoon. Monday I started PUVA, or light therapy, which means taking medication an hour before standing in a tube that shoots UVA light for a few minutes. I'll do that three times a week and see if that helps stop the rejection.

Today I went to the hospital to see Dr. Brown and he has added cyclosporine to the attack on the GVHD. Cyclosporine is what I took post transplant #1 and 2, and when I had GVHD in the past - it suppresses the immune system as does prednisone. They will also need to monitor for other signs of GVHD (liver, eyes, etc) as well as the host of side effects the prednisone and cyclosporine will provide. I am all too familiar about those - and any of you who knew me in the Fall of 2003 will perhaps recall the "pred-n-zone" I was in for a while. The dose I am on now is less than 2003 but still quite significant, so uncertainty is the key word right now. They will also need to monitor cyclosporine levels in my blood for toxicity, as well as glucose levels from the prednisone and magnesium and calcium levels as prednisone will cause bone loss. And a bunch of other levels and things...

I also saw Dr. Campbell this morning, the plastic surgeon who did the skin graft on my neck in 2006 - he extended my antibiotics another week and will do a biopsy a week from Tuesday to see what is going on there and if it has any connection to the GVHD.

It's all a bit of a blur right now but the summary is really - a lot more medication with a variety of side effects to hopefully counter the rejection disease before it progresses further (the skin spots have increased, thickened and are hardening - they could be debilitating if they continue) - and more treatments and bloodwork appointments.

The good news is that currently the skin is not painful and that they are being aggressive to counter the GVHD. And with Ryan's situation close at hand, I am thankful that it is GVHD and not a relapse.

It is rather amazing what can happen in a week! Good night...

Random life bits from February

Last Friday I was working at one of my clients, the Calgary Zoo, and the controller arranged a quick "behind the scenes" for my audit team and the finance group. This meant over lunch we got to go with the Zookeeper in a trench that runs between the giraffes and the hippos and help him feed the giraffes. I fed around 15 carrots to the mother and father of Sophie, the newest baby giraffe - Sophie just hung back and stood pretty with a "I know I am adorable" look to her. Mom and dad chowed down, slurping carrots with their long tongues and leaning over me looking for a few more. While I was facing the giraffes, the Zookeeper said "just turn around slow" and I did to find one of the hippos had come out of the water and now had his head over the railing where I stood, just a few inches away. He looked at me and opened his gigantic mouth as to say "yeah, so what about those giraffes - check THIS out" - his tongue and teeth and lips were so big and close that my picture couldn't even fit it in. Can't remember what I ate for lunch.

I had a low-grade fever for a few days mid-month and eventually got better without a visit to the clinic. Nice. The rest of the month I spent quite tired...March looks to be better on the fatigue-front.

On a rare night out with Tasha, we took in a most amazing musical experience at Jack Singer listening for an hour and a half, no intermission, no warm up - to The Fray. I downloaded their album when I got home, and wondered if the drummer was single?

Jack and Davis were over at Mom and Dad's for dinner last week and I played "tickle monster" with them as requested - where they bounce on Mom and Dad's bed and I kneel in the middle, stretching my arms out like an octopus trying to tickle them while they squeal. They know my game as soon as I arrive. I hadn't seen them for a while and Jack said "I really missed you". I guess tickling is my forte - Talyn requests "Auntie Tricia tickles" most nights that I see him. The twins prefer the heartier version of my craft. It's wonderful to have something that little boys love you for.

Since December I have been noticing dark spots on my skin - they almost look like bruises, and they have been increasing in numbers, spreading up and across my torso since then and getting darker. My doctor has seen it (bloodwork is all good) and I am seeing a specialist later this week to test whether it is a form of rejection or not - post transplant #1 I had skin Graft-versus-host-disease of the skin and had to do a light therapy treatment so that it didn't thicken. But this is far more extensive - I really look like a leopard from the thigh up to my neck. And then there's my neck which still has an open wound from last summer when I fell and my skin graft was aggravated. Seeing my plastic surgeon next week too and may need another graft. My bandages cost $5/day, and I am really tired of my neck needing to be covered all the time, not to mention how seized up my upper back and neck muscles are while they try to accommodate the wound. Skin is just skin, and I know as long as it's not necrotising faciatus I should be happy, but I am sick of looking at my skin right now.

I have been helping do some creative work to assist in finishing a book that Ryan has created that talks about the happiness you can find even while facing cancer and death. He has taught me so much. Assisting with it breaks my heart and fills it with a unique energy all at the same time.

February I worked a little too much (fixing that don't worry) but liked that a client reported that they loved working with me...nice to know I still know what I am doing at work after a 3 year break. Last night I left the office, worked out with a friend, had a steam and went to Costco, spent too much, bought too much, did another workout to haul all the stuff up from my parkade, watched PVRd Grey's Anatomy and went to bed early. There were so many nights in summer 2006 that such a month and a night seemed totally impossible and an unfair dream. Guess you need to keep dreaming.

Leukemia & Lymphoma Society asked me to be the honoured hero for the 2010 Light the Night Walk in September.

Last summer a friend of my dad's gave me an orchid plant for good energy. I loved the plant - Dr. Aung has orchids all over his clinic in Edmonton. The flowers just seem perfect and simple. In the Fall, the flowers all eventually fell off - I googled to find out that once that happens you are to cut the stems down, so I did. Just 2 little sticks. Months passed. Every week I watered with the little orchid food. Nothing. Sticks. While I was in Maui for 2 weeks in January, I didn't have anyone look after my place. No water for the orchid (sticks), no orchid food. When I came back, I sat down on my sofa and looked over and saw a one inch sprout coming out of one of the sticks! In the absence of water and food, the orchid had not only survived, but it grew. And since then I have watched the sprout grow longer and pop little buds and the buds get larger. And yesterday the biggest bud opened into a beautiful flower....not totally perfect - it has one petal that is like Nemo's fin, but beautiful. Amazing what can not only survive in the face of challenge but grow into something beautiful.