I realize it's been quite a while since I posted. The past few days I have been pretty weak and sleeping a lot. My hands are also shaking a lot these days, so typing is a huge challenge (better than writing as I can delete)! I was at the clinic on Wednesday, and Dr. Brown calls my blood counts "remarkable" at this stage. My bone pain has decreased and nausea almost disappeared, so that is positive. New developments include some changes in my hearing, the shakiness and significant fatigue/weakness. I continue to have no appetite for food or liquid, but try to get as much in as I can. Dr. B is sending me to a hearing centre and then to a specialist to keep on top of it. Post-transplant #2 I lost most of my hearing for a couple of months, but then almost all came back. It's really hard to say if it was GVHD or related to medications, etc.
The bone marrow aspirate went well, but the full report was not back as of Wednesday. I'm not too concerned as the information is mostly for the clinical trial. I reached Day +30 last Saturday and took my last dose of one of the anti-rejection drugs, so that has eased my pill-load. On Monday I drove for the first time since May - only to the drugstore and through the Starbucks drive-through, but it was a nice step in the normal direction. On Tuesday I was able to see my physiotherapist and start a plan to get back some flexibility and muscle that I have lost.
Overall, I am still in super shape for Day +37 of my third bone marrow transplant. I know I have to just be patient, but some days I am just a little worn. I'll just hope my last few days of "investing" starts to turn into some benefit! Thanks again for your continued support...I hope everyone is enjoying the summer with friends and family...Cheers.
Saturday, 19 July 2008
Thursday, 10 July 2008
Day + 28 Birthday Blur and a little gambling
I can hardly believe it's almost been a week since I posted. The days really seem to blur lately, with weakness, bone pain, and skin discomfort keeping the pace pretty slow. Despite the slow pace, I can recognize some improvement - my nausea has certainly slowed and I think my energy between rests is a bit better than a few days ago.
As an example, I made a couple of first "limited public" appearances. Saturday Tasha and I drank lemonades at Starbucks and then I took Mom to lunch at Earl's on her birthday Sunday. It was a beautiful day and we sat on the deck and it almost felt like normal. Later that night, after a long sleep, we went to 'the boys house' for a BBQ birthday or "happy day" as Jack and Davis called it. I watched the boys entertain "Nana" for a while and was happy to go home tired for a good reason!
My visits to the hospital Monday and yesterday were fairly informative. My blood counts continue to be steady, and the doctors continue to adjust my 2 anti-rejection (immunesuppressive) medication doses based on the levels in my blood. After bloodwork, a chest X-ray, fluids and overall assessment yesterday, Dr. Brown outlined a few considerations for the coming months. It seems that I will have to be on tacrolimus, one of the anti-rejection drugs, for longer than I had expected. If I had a 100% sibling match, I would only have be on it for 60 days, but Brandon is no longer a 100% match because of transplant #2, so instead I will be on it for 180 days before they begin to taper it.
As part of the protocol for the trial, patients receive a chemotherapy drug in their spinal fluid each month for 5 months starting at 3 months post-transplant. Years ago, doctors realized that some ALL patients can end up with CNS (Central Nervous System) disease, stemming from the leukemia, and that by adding some treatments directly into the spinal fluid (intrathecal chemo), this risk was mitigated significantly. Prior to my first transplant and following my second, I received a number of these treatments. Dr. Brown is proposing that we skip the planned chemo injections and has discussed this with both the New York and Calgary teams. He again needs my decision on the matter, and once again it is a choice of which risk to take. The risk of CNS disease is higher by not proceeding with the treatments, but the potential side effects of the treatments (various neurological effects including paralysis) are daunting as well. So we'll see what gamble I'll take.
Saturday is Day +30, so tomorrow I'll have a bone marrow aspirate at the hospital. I'll have 3 more of these in the coming year, and this will show the doctors more details about the status of my marrow. I've had so many I imagine my bone looks like Swiss cheese! Regardless, it's very exciting to reach Day +30 and be so well, and I even get to drop 6 pills that I currently take each day, so that should lighten my daily "pill-load"! I may even be able to expand my "limited public" appearances in the coming weeks...
I hope all of you have a light and fun weekend, and enjoy whatever weather pattern visits you. Of course, I appreciate all the support, prayers and energy you continue to generously send me.
Cheers
As an example, I made a couple of first "limited public" appearances. Saturday Tasha and I drank lemonades at Starbucks and then I took Mom to lunch at Earl's on her birthday Sunday. It was a beautiful day and we sat on the deck and it almost felt like normal. Later that night, after a long sleep, we went to 'the boys house' for a BBQ birthday or "happy day" as Jack and Davis called it. I watched the boys entertain "Nana" for a while and was happy to go home tired for a good reason!
My visits to the hospital Monday and yesterday were fairly informative. My blood counts continue to be steady, and the doctors continue to adjust my 2 anti-rejection (immunesuppressive) medication doses based on the levels in my blood. After bloodwork, a chest X-ray, fluids and overall assessment yesterday, Dr. Brown outlined a few considerations for the coming months. It seems that I will have to be on tacrolimus, one of the anti-rejection drugs, for longer than I had expected. If I had a 100% sibling match, I would only have be on it for 60 days, but Brandon is no longer a 100% match because of transplant #2, so instead I will be on it for 180 days before they begin to taper it.
As part of the protocol for the trial, patients receive a chemotherapy drug in their spinal fluid each month for 5 months starting at 3 months post-transplant. Years ago, doctors realized that some ALL patients can end up with CNS (Central Nervous System) disease, stemming from the leukemia, and that by adding some treatments directly into the spinal fluid (intrathecal chemo), this risk was mitigated significantly. Prior to my first transplant and following my second, I received a number of these treatments. Dr. Brown is proposing that we skip the planned chemo injections and has discussed this with both the New York and Calgary teams. He again needs my decision on the matter, and once again it is a choice of which risk to take. The risk of CNS disease is higher by not proceeding with the treatments, but the potential side effects of the treatments (various neurological effects including paralysis) are daunting as well. So we'll see what gamble I'll take.
Saturday is Day +30, so tomorrow I'll have a bone marrow aspirate at the hospital. I'll have 3 more of these in the coming year, and this will show the doctors more details about the status of my marrow. I've had so many I imagine my bone looks like Swiss cheese! Regardless, it's very exciting to reach Day +30 and be so well, and I even get to drop 6 pills that I currently take each day, so that should lighten my daily "pill-load"! I may even be able to expand my "limited public" appearances in the coming weeks...
I hope all of you have a light and fun weekend, and enjoy whatever weather pattern visits you. Of course, I appreciate all the support, prayers and energy you continue to generously send me.
Cheers
Friday, 4 July 2008
Day +22 Yahoo!
Wednesday I returned to the Bone Marrow Clinic, 6 floors below Unit 57 - just enough room to realize that I was walking in as an out-patient. After bloodwork, fluids and a visit from Dr. Brown, I was officially discharged from Unit 57 - my wristbands were cut!
My bloodwork continued to look stellar. The pharmacist gave me my pages of prescriptions to fill (Douglasdale pharmacy LOVES me) and Dr. Brown outlined the list of precautions to follow (no crowds, no sick people/kids, hand washing, immunesuppressed diet, etc.) as well as symptoms to call or come into the hospital immediately. Basically any change in any part of my body is possibly GVHD! He also indicated I could not drive for at least another week and maybe longer depending on what drugs I am still on. I reported some changes in skin, bone pain, headache, nausea, bowel activity and fatigue. In the end, he said he reserved the right to call me in at any time, but that I would need to at least come back Monday for bloodwork and then next Wednesday to see him. Wow. A pretty great visit overall, the best part being it was just a "visit".
The days this week have really evaporated. Each day by the time I get breakfast, pills, shower, change my dressing and apply my various creams, it is lunchtime and more pills. Then I usually need a rest for an hour and a half. I have more pills with dinner and then at 10 pm when I get ready for bed. Not too much actual time in between all of that to get anything done, like laundry or making my bed! And with my fatigue, I'm really not capable of more than that and perhaps a slow walk around the block. I'm not explaining this to complain, I'm outlining it so that you don't worry that I'm bored or something! Not bored. At all. And if you don't see a post, it's likely I wore myself out my putting away some clothes and just ran out of the energy! All that said, I love my simple life right now and I know that every day I am getting just a little stronger, and managing the side effects a bit more strategically, every day.
A highlight of the week, other than discharge, was Wednesday evening, when my brother called over to see if we wanted to drop by to see the boys (and him and Dana!). I had quite a bit of
bone pain, but did not want to miss out on seeing Davis and Jack after so long. I couldn't touch them, but was thrilled to be entertained by them for around 45 minutes. They had just returned from a long weekend with lots of Dana's family and cousins, so they were ready to tell and show all the new things they could do. Daisy even made the trip, which added to the excitement as they love to see her (and Jack likes to imitate her) Pure joy.
The Calgary Stampede started last night and you can almost hear the "Yahoo" in Douglasdale. Clearly I won't be heading there this year, but will do some yahooing myself at home. It's sure great to be out. I hope you enjoy being out too this weekend. Again, many many thanks for all the prayers, thoughts, Qi and energy. Yahoo to you!
Tuesday, 1 July 2008
Day + 19: Farewell June
It's hard to believe it's July. Not even a month ago I was just getting ready to check in to the hospital. June sure was an incredible month. The weekend was wonderful....beautiful weather lured me outside several times, and mom and I even went to Eau Claire downtown and walked along the river, grabbing a coffee on our way out. Mom, dad and I ate outside a few times, and really just took it easy. My fatigue is quite significant and the nausea comes and goes so I really appreciate mom and dad these days - they make extra trips up and down the stairs when I can't get enough energy to get up. Overall though, I continue to improve and am amazed to be at home.
Yesterday I returned to Unit 57B for most of the day, getting bloodwork, fluids, tests and seeing Dr. Chaudry. He's all smiles these days. My blood counts continue to move further into the strong end of normal, and the pain in my abdomen is almost completely gone. He's made an appointment for me tomorrow with Dr. Brown in the Bone Marrow Clinic, where the plan is to snip my hospital ID band and actually discharge me to an outpatient status, which is remarkable for a Day +20 3rd transplant patient (oh yeah, they don't have another 3rd transplant patient to compare to!). No more hospital nights!
So now my primary challenge is having patience with the medications, fatigue, nausea and lack of appetite. I just have to remember not to get frustrated. If a whole day gets "wasted" on sleep and sitting, so be it. It's an investment in the next day. I only have to recall all the other things I have faced over the years to realize that this is a pretty easy challenge in comparison. I will enjoy every non-fatigue moment I have!
Happy Canada Day! Thanks again for all your support.
Yesterday I returned to Unit 57B for most of the day, getting bloodwork, fluids, tests and seeing Dr. Chaudry. He's all smiles these days. My blood counts continue to move further into the strong end of normal, and the pain in my abdomen is almost completely gone. He's made an appointment for me tomorrow with Dr. Brown in the Bone Marrow Clinic, where the plan is to snip my hospital ID band and actually discharge me to an outpatient status, which is remarkable for a Day +20 3rd transplant patient (oh yeah, they don't have another 3rd transplant patient to compare to!). No more hospital nights!
So now my primary challenge is having patience with the medications, fatigue, nausea and lack of appetite. I just have to remember not to get frustrated. If a whole day gets "wasted" on sleep and sitting, so be it. It's an investment in the next day. I only have to recall all the other things I have faced over the years to realize that this is a pretty easy challenge in comparison. I will enjoy every non-fatigue moment I have!
Happy Canada Day! Thanks again for all your support.
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