Pre-transplant testing is basically complete. Since last post, I've had more bloodwork, an echocardigram, bone density test, ECG, and pulminary functions test. I even travelled to Canmore for a last-minute CT of my chest - beautiful mountains and a bunny in our front bushes when I returned!
I also had a physical this past Thursday with Dr. Chaudry, one of the bone marrow team who will see me daily on Unit 57 at the Foothills a week from Monday. Dr. Chaudry had to review my entire history (which is as colourful as it gets) and check me out. He has known me since my disease surfaced in 1997, visited me in ICU back in 2006, and really didn't seem that excited about having to send me back to 57 again especially when I look so healthy right now. When I pointed out his lack of excitement, he just sighed heavily and said he wished they didn't have to make me sick again. It's a bit of a reminder of the reality of what I am heading into. While Dr. Brown has been working non-stop to get this trial approved, communicating with me every week (I have his cell, home, work and email!) with updates and knowing my desire to do this treatment, Dr. Chaudry hasn't seen me as often since the 2006 disaster. These doctors have become friends and I see the weight of my journey on them more than ever now. I have told them I'm in it to win, and I hope to share that win with them, along with everyone else.
Seeing Dr. Aung a couple more times last week in Edmonton was fabulous. Those visits, along with daily Qi Gong and more acupuncture by my physiotherapist (consulting with Dr. Aung) have allowed me to feel strong mentally and physically, and feel 90% of my toes. I can balance on one foot and do Yoga poses now when I couldn't even lift one foot off the ground 6 weeks ago! I can also run up the stairs now...bizarre!
A week ago last Friday Mary Ellen and Bob had us over for dinner with Marty and Karen (all uncles and aunts) that was wonderful. To spend an evening eating delicious food with wonderful people who love me so much was energizing for me. I am so fortunate.
Last Wednesday I celebrated 34 years of life, with another delicious dinner at a restaurant in Calgary "BLVD" with Mom, Dad, my brother, Dana, Tasha and Ryan. It was a great night, and a chance to enjoy time together with my key "hospital team" before these next few weeks explode.
The weather did not cooperate for these last two days of normal freedom! I had planned to go to the Children's Festival today with Tasha and Talyn and then golf with Dad, but the cold rain changed that. Instead I did some inside boxing, bowling with mom and Tasha and brain academy with Dad. The Wii has no weather restrictions...
I feel very strong and ready to take on this next couple of months. Absolutely. Of course, that does not mean I am not concerned about the challenges that lie ahead. Tomorrow I go into the hospital to have a central venous catheter (CVC) inserted. It is a silicone tube that is inserted into a large chest vein that runs to the heart. The line is extremely important for the transplant process as it is the primary tool for blood collection, chemotherapy infusion, blood transfusion, antibiotics, hydration etc. I have had them inserted 3 times before, once for each transplant and once after my last relapse. Unfortunately, the stitches from the last insertion in 2006 were the primary source of the flesh-eating disease that I experienced, which sent me into emergency surgery, Intensive Care and months of complications. My neck and chest now have virtually no tissue between the bones and the skin...which will make the insertion tomorrow a little interesting to say the least. I am probably more concerned about tomorrow and the coming week when the incisions heal than I am about the experimental chemo and transplant! Dr. Chaudry talked directly to the radiology doctor last Thursday to explain my situation, and Dr. Brown had ordered an ultrasound last December so they could "explore" the possibilities for the line...so I am sure it will be okay, but I'll be really happy when it's inserted and then when the stitches are healed and removed 10 days from now. Mmmmm. Breathe in. Breathe out.
6 comments:
Dear Tricia,
Bob & I are thinking of you in a special way today, as you go to have your CVC inserted. Our love and prayers are with you every step of the way. "I'm in it to win" is your stance and we join with you in that, with all our hearts.
Much love,
Mary Ellen & Bob xoxoxo
Dear Tricia,
We are 'in to win' too. I have sent out requests to various prayer groups for their input as well. Our breaths,hearts and heads are with you all the way.
Much love,
BJ and Bob.
You can definately count me in too!
Love Sonia
Dear Tricia,
"A little scared" is a good part of the mix when you are "healthy, strong" and "ready" for the next stage. Anticipation forces you to take those deep breaths in and allows you to release them slowly as you gather chi for the performance of a lifetime.
Like your "key hospital team" of family and friends, your medical doctors, Dr. Aung and your physiotherapist, we are willing to "carry the weight" of this next part of your journey in any way that we can.
Please feel us there with you, Tricia, pulling for you, harder than ever, with our love and prayers.
God bless you!
Louise and David
Dear Tricia,
Our little family is sending our love.
I will be in the chair tomorrow praying and thinking of you during my donation. I always do, I always will.
Love and Qi
Uncle Ed and Deanie
tricia. i hope that you are doing okay. just wanted to leave a note wishing you well.
jaime.
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