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... :)
6 comments:
Tricia,
I am so happy that you are so positive and healthy as you embark on your next adventure!! You can count on your family & friends to be there as your 'oars' as you "Row Row Row your boat"
Cheers!
Love Sonia
Hi Tricia,
Thanks for all the information in your newest post. Your strong & positive spirit is contagious, and fills me with love & gratitude for you.
How great it is that you are experiencing more & more feeling in your feet! It sounds like you feel that the whole team of doctors that are with you on this journey, are all remarkable! I'm sure they also know they are dealing with a remarkable patient!WHAT A GIRL!
Lots of love,
Mary Ellen & Bob xoxoxo
Hi Tricia,
Thanks for the up-date. It sounds like you are on a very positive journey. We will all be in your boat with you, in spirit and hope. May you have a safe and successful trip.
Love, BJ
Tricia girl,
You sound as though you are feeling strong and clear, and I am overjoyed to hear how much your Qi Gong and Dr.Aung are helping you.. and your feet..and your bone marrow...wowowow!
As you prepare in this last few weeks before you begin your transplant journey, know that you have helped to inspire and row, row, row countless boats all over the world..including mine.
Love you lots!
Barb
Dear Tricia,
Congratulations on successfully taking that final, huge step towards qualifying for the clinical trial. That you are still in remission is another amazing gift of life. You HAD to be there to go on; and so, you were!
We are in absolute awe as we watch you in your "race to maximize strength of mind, body and spirit". We see that your energy comes from friendships like the one you have with Ellen. It comes from toddlers like Tayln, Jack and Davis. You find it in the fun of family gatherings and in friendly competitions. You even draw strength in helping friends move from one home to another and in sharing "transplant tips" with a fellow patient.
More than anything, we appreciate the way that you have explained the purpose of your whole battery of pre-transplant tests. We understand that the information taken ahead of time will be used to determine how your "new immune system" is reacting to each and every part of you. It has suddenly become very clear to us that when you have a bone marrow transplant, YOU become the foreign element, fighting rejection. Wow, is that ever scary!
It is wonderful that you got to Edmonton for appointments with Dr. Aung. The "boat" imagery he uses is simple and helpful. If time spent with Dr. Aung helps you to "get the boat going", then when Dr. Brown and his team put you firmly onboard, you will know how to row with calm and efficient conservation of energy. That picture of you gives me so much hope.
You already know from experience what the next leg of your journey entails, Tricia. You inspire us by being as ready as you possibly can for what lies ahead. You are in charge and we trust your knowledge, courage and strength.
Much admiration and love,
Louise and David
Dear Tricia,
If there is any truth at all to being able to send energy through the ether from Ottawa to Calgary, you should feel a great surge any time now. You will be constantly (well, maybe not constantly, but very, very frequently, at least) in my thoughts over the next few weeks. Both Betty Jo and I will anxiously look forward to updates, from whoever might have them.
Love,
Uncle Bob
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