Tuesday, 13 May 2008

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... :)

Wednesday, 30 April 2008

Qi Qi Qi

It's been quite a week since I found out that the trial was approved - here's the health highlights:

Thursday I received a call from the clinic to find out my May 23rd date had to be changed in order to get all of the baseline testing done and results back in time for admission. So mark a new date down (the last change I hope) - June 12th, with collection from Brandon on June 11th and admission to hospital June 2nd. This date change is a bit of a mind-test for me, as that means feeling exposed with no chemo for three more weeks. Thursday evening before bed I felt a bit shivery, and my temperature showed I had a mild fever, which continued through the night.

Friday morning I called the clinic and went in for various tests...it seems every so many Fridays I feel I need a nose swab (worse than getting an IV put in, in my mind)! Anyway, I went home and slept, hoping that I would feel well enough to attend my Qi Gong 2-day workshop on the weekend.

Since the fever had not come up again, I was able to make it to Qi Gong Saturday and the rest of the weekend is difficult to explain. As I'd mentioned a few weeks ago, I had several strong messages from different people to see Dr. Aung, and I know why now. He is easily one of the kindest, most peaceful, intelligent, intuitive, healing people I have ever met. I felt happier and stronger just being near him.

Qi Gong (pronounced Chee Gong, not Shi Gong as I had until I attended) is one method used in Chinese Medicine, which involves breathing and concentration exercises to build up, and move your Qi, or energy, to direct it to parts of your body and keep yourself in a state of total harmony and wellness. While it sounds really intangible (and perhaps a bit crazy), there is actually a very standard, tangible and somewhat technical framework to follow in doing it, and I was able to truly FEEL it working. I realize now that the June timing for transplant is perfect - it gives me more time to practice and get stronger!

Dr. Aung took a few minutes after the first day to see me personally, a generous action, and after looking at a few things, inserted some acupuncture needles "with love and kindness" into my legs, arms and neck, for various reasons. After about 3 minutes, I had a strange feeling and it took me a while to figure out what it was. I realized it was my baby toe, against the vinyl chairback that my feet were resting on. I could feel my baby toe. I haven't been able to feel my feet for the past 18 months, as one of the chemo drugs I've been on has a neuropathy effect and over time, the entire front half of my foot has become numb. So when I suddenly felt all of my toes, it was quite an overwhelming experience.

Sunday night Brandon, Dana, Davis and Jack came over for dinner, and I had enough energy to easily last the night, dancing with the boys, playing the Wii with Brandon...my Qi was strong!

Tuesday I relayed the events of the weekend to my physiotherapist, and discovered he trained with Dr. Aung for a while! So this Friday he's going to do some acupuncture, after he contacts Dr. Aung to consult...just another reinforcement of Dr. Aung's role in my journey. Crazy.

Tomorrow I will have a bone marrow aspiration at the hospital, where they draw out bone marrow from the bone above my butt - this test is one of the most important on the list, as it will indicate the state of the marrow, and I must be in remission to remain as a candidate in the trial. I'll report the results as usual! For now, my mind is on what I'm going to have to eat, as I'm off to meet a friend for lunch. Life!