Healthy, Strong, Ready and (a little) Scared

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.

Row Row Row your boat

First things first. Let me report that my bone marrow biopsy results show that I am still in remission (whew!), which is the final step in qualifying for the clinical trial!

The biopsy went very smoothly back on May 1st - I've had over 10 of these procedures, and for the first few I did not take sedation (I wanted to drive home). Inner bone pain is absolutely the most severe pain I've ever felt, and one of my doctors pointed out a few biopsies ago that "you don't get extra points for pain", so I've opted for sedation ever since. Much smarter.

Later that day, my mom's cousin Ellen, who I lived with for a period of time when I finished university in Regina, came to Calgary for a visit. It was an awesome couple of days eating at scrumptious restaurants, drinking good wine and visiting, laughing and catching up with a dear friend. An excellent source of energy!

That Sunday I attended a fun, creative and wonderful celebration of Talyn's 3rd birthday (Tasha and Ryan's son)! It's hard to imagine the tiny newborn that I held in his first hour is already 3! His Cars-themed party was pretty grown-up.

The next few days were filled with a flurry of activity when Tasha, Ryan and Talyn moved from their Copperfield home to the Richmond area of Calgary...I was around to assist in assembly, organizing, or simply playing with Talyn, and the move went successfully. While I'll miss being minutes away from them, I'm so happy that they are in a beautiful house in a great neighbourhood with almost no commute to work.

On the weekend, after having Jack, Davis, and their parents over on Mother's Day, mom and I met up with my 3 Survivor Powerchicks - Shannon, Julie and Laura and watched the finale of Survivor. Myself with these 3 ladies from PwC are true Survivor addicts, and have had an intense and complicated pool going on the reality show for several seasons. We even have a plaque to recognize each season's winner (I must admit my name is on there the most often!). The finale is a big party with food and fun, and hilarious commentary by all - I am grateful to have them as friends. It may sound crazy, but it's an example of taking something simple in life and making it as fun and interesting as possible!

In between all the action, I continued several pre-transplant tests including seeing an eye specialist, having a hospital dental consult, X rays and bloodwork. This week, I met with the clinic's dietitian and the pharmacist who walked through all the drugs and medications I'll be taking, as well as the numerous side effects that are likely and possible. With a bone marrow transplant, the new immune system can reject almost anything in the body, as it's all new. It's the opposite of an organ transplant where the immune system can reject the "foreign" organ - instead the new immune system rejects the entire body as it's all foreign! So the pre-admission testing is critical to establish a baseline of what is normal for everything. I have many more appointments this week and next week to continue that assessment.

While on my way to the hospital this past Monday, Dr. Aung's clinic called to let me know they had fit me in to see him Tuesday morning. Since they are booking into August, it was the wonderful work of a couple of people that originally told me about him that managed to get me in so quickly. I am so fortunate. I drove up to Edmonton yesterday morning, spent a couple of hours at his clinic, and drove back later that afternoon. I'm heading up there again tomorrow for 2 more sessions with him Thursday and Friday. As he says, in his positive way, he wants me to get strong enough to "row the boat" but first he needs "to help me get the boat going"! It's perfect timing with only a couple weeks until admission....between Qi Gong and Dr. Aung, I should be able to help row the boat that Dr. Brown and his amazing team have created for me. By the way, the feeling in my feet is probably 75% back!

So, the race to maximize strength of my mind, body and spirit before admission is going very well. I feel healthier than ever. This was confirmed to me on Monday, when I sat down in the waiting room at the bone marrow clinic, next to two women. I could tell the one woman was the patient, with her head scarf on, a thinner frame and comfortable clothes. Next to her was her sister, and they were leaned over a piece of paper that I recognized as a bone marrow workup calendar. I pulled out my calendar to make some notes and mark some changes, and the sister said "you have a calendar too, hey? Are you donating bone marrow?" I smiled and said "no, I'm receiving it - for the third time". They were pretty surprised. I guess my stylin' hair, good colour, strong body dressed in a spring casual outfit with matching leather sandals (with a small heel now that I can feel my feet again) made me look like someone who would be donating rather than needing marrow! Fantastic! For the next few minutes, I talked to them about my previous transplants, that they were in an excellent place to have the treatment, how fortunate she was to have a 100% sibling match, and that I was kind of an exception to need more than one transplant. It turns out her Day 0 is also June 12th, so I'll see her in Unit 57 and I told her I'd share any of my "transplant tips" with her.

So maybe I'll be able to row my boat and guide a few other boats too... :)