I'm in Hawaii! Or on my way to Hawaii after spending a day in Vancouver - depending on when you are reading this. Camp Koru Surf and Stand Up Paddleboard starts tomorrow (Monday). I found out it's at the same camp where Isaiah and I camped in January (small world) so I know what to expect location-wise which was actually quite helpful when packing.
Meeting new people tomorrow! Eeek!!
I'm sure I'll have much to report on what camp is like as an adult when I return.
Sunday 29 April 2018
Sunday 22 April 2018
National Organ and Tissue Donation Awareness Week
It's National Organ and Tissue Donation Awareness Week! Organ donation has been in the news lately with the Humboldt crash and Logan Boulet's decision to become an organ donor - and the family's decision to honor that wish. One of the few positives to come from the terrible tragedy is that through his and the family's decision, 6 people were given a chance of a better life. Of course it's never just 6 people when you consider their families and loved ones as well.
Also, more people have registered to be organ donors after the news of the bus crash which means even more lives are going to be saved. It's an amazing chain reaction after such a terrible situation.
The chances of becoming an organ donor after you die are still fairly slim. You have to die under just the right circumstances which is why it's so important for those who are able to donate, to do so. In the meantime, while you're still alive, there are things you can do to help.
1) You can register to be a stem cell/bone marrow transplant donor (if you're between 18-35). While it's unlikely you'll ever be called, there is the chance you can save someone's life. A stem cell transplant can help cure someone's cancer. Cure!
I was an inpatient at the bone marrow transplant ward of the VG when they had empty beds and it felt like a first class suite compared to the rest of the cancer floor. The rooms were larger, the nursing ratio was better, the air was specially filtered. It was great to stay in because I wasn't the one needing a bone marrow transplant. The filtered air and better nursing care is important when someone has zero immune system and their body is trying to grow blood cells.
Having my cancer spread into the spinal cord cancer was what my doctor was trying to prevent by injecting me with chemotherapy medication into my spinal fluid. As a result, I spent a lot of time worrying about the cancer spreading and me needing a bone marrow transplant. Thankfully it didn't happen but it easily could have.
2) You can donate blood! I recognize Canadian Blood services doesn't accept everyone but speaking for those who have required a blood transfusion, we really appreciate those who are able. As someone who has had multiple blood, plasma, and platelet transfusions, I am very thankful to everyone who has donated. It has saved my life.
3) Casually bring up organ donation to your friends, family, and/or co-workers enough times that it no longer seems "terrifying" or "morbid" and they'll be more receptive to being a donor. If no one has ever talked about it, it will be too overwhelming when their loved one dies to make that decision.
Here are a few "fun" organ donation statistics from the Trillium Life Network for you to sprinkle into conversations this week:
Also, more people have registered to be organ donors after the news of the bus crash which means even more lives are going to be saved. It's an amazing chain reaction after such a terrible situation.
The chances of becoming an organ donor after you die are still fairly slim. You have to die under just the right circumstances which is why it's so important for those who are able to donate, to do so. In the meantime, while you're still alive, there are things you can do to help.
1) You can register to be a stem cell/bone marrow transplant donor (if you're between 18-35). While it's unlikely you'll ever be called, there is the chance you can save someone's life. A stem cell transplant can help cure someone's cancer. Cure!
I was an inpatient at the bone marrow transplant ward of the VG when they had empty beds and it felt like a first class suite compared to the rest of the cancer floor. The rooms were larger, the nursing ratio was better, the air was specially filtered. It was great to stay in because I wasn't the one needing a bone marrow transplant. The filtered air and better nursing care is important when someone has zero immune system and their body is trying to grow blood cells.
Having my cancer spread into the spinal cord cancer was what my doctor was trying to prevent by injecting me with chemotherapy medication into my spinal fluid. As a result, I spent a lot of time worrying about the cancer spreading and me needing a bone marrow transplant. Thankfully it didn't happen but it easily could have.
2) You can donate blood! I recognize Canadian Blood services doesn't accept everyone but speaking for those who have required a blood transfusion, we really appreciate those who are able. As someone who has had multiple blood, plasma, and platelet transfusions, I am very thankful to everyone who has donated. It has saved my life.
3) Casually bring up organ donation to your friends, family, and/or co-workers enough times that it no longer seems "terrifying" or "morbid" and they'll be more receptive to being a donor. If no one has ever talked about it, it will be too overwhelming when their loved one dies to make that decision.
Here are a few "fun" organ donation statistics from the Trillium Life Network for you to sprinkle into conversations this week:
- There have been 49 lung transplants from Jan 1-March 31 this year in Ontario.
- As of April 22, 2018, in Ontario, there are currently:
- 49 people waiting for a lung transplant;
- 39 waiting for a heart transplant;
- 1,116 waiting for a kidney transplant;
- 226 waiting for a liver;
- and 1 person waiting for a small bowel.
- The 2017 registration rate in Ontario was 32%, up one percent from 2016.
- While there was a spike in organ donation registration after the Humboldt crash, that number has dropped back to normal so it's important to keep the conversation going.
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| This could be your blood saving a person from their own body. |
Sunday 15 April 2018
Two years cancer free!
I had my two year post-cancer hematology appointment on Thursday. The doctor said my bloodwork looked great, then she poked at me to see if she could feel any lumps, and said "see you in 6 months!"
I asked about risk of recurrence at this point and was told it is quite low at this point. I was told I had about a 50% chance of recurrence when I was diagnosed but that has dropped two years out. However, there have been no good long term studies for people with PTLD so she can't say the word "cured."
(With some cancers, it's considered cured if it has not returned in 5 years. Although some doctors still don't like to say "cured" and "cancer" in the same sentence, it is becoming more common.)
Just like there were very few studies to determine survivability rates of PTLD, the recurrence studies into PTLD (to determine the length of time that puts people into the "cured" zone) have not produced very good results. Most of the people tend to die from other non-cancer complications, like rejection or infections, before the end of the 5 years studies.
The sample size of these studies would be fairly small, due to only about 1-10% of the transplant population ever getting PTLD and most people who get PTLD tend to be older kidney or liver transplant patients. When trying to translate that to a young person who had a lung transplant and PTLD, it's hard to draw any conclusions.
I was also told that last year, guidelines came out for the treatment of PTLD. The new recommendations are to have 4 weeks of Rituximab and 4 cycles of R-CHOP. The doctor said I probably would have gotten about 6 cycles of R-CHOP since the cancer was extremely aggressive and because I "handled chemo so well."
I didn't feel as though I handled chemo that well but I guess I don't really have anyone to compare myself to. Two extra cycles of chemo in retrospect wouldn't have changed that much. Well, it would have been two fewer hospital admissions, two fewer "Am I going to die from this"-feeling fevers, and less white-blood-cell-growing pain, so that would have been nice. But now I feel more confident that they got all of the cancer cells with the 8 cycles.
I'm personally concluding that "death by cancer" is now at the bottom of my "how will I probably die" list. Rejection and/or infection has bumped back up to the #1 spot!
I asked about risk of recurrence at this point and was told it is quite low at this point. I was told I had about a 50% chance of recurrence when I was diagnosed but that has dropped two years out. However, there have been no good long term studies for people with PTLD so she can't say the word "cured."
(With some cancers, it's considered cured if it has not returned in 5 years. Although some doctors still don't like to say "cured" and "cancer" in the same sentence, it is becoming more common.)
Just like there were very few studies to determine survivability rates of PTLD, the recurrence studies into PTLD (to determine the length of time that puts people into the "cured" zone) have not produced very good results. Most of the people tend to die from other non-cancer complications, like rejection or infections, before the end of the 5 years studies.
The sample size of these studies would be fairly small, due to only about 1-10% of the transplant population ever getting PTLD and most people who get PTLD tend to be older kidney or liver transplant patients. When trying to translate that to a young person who had a lung transplant and PTLD, it's hard to draw any conclusions.
I was also told that last year, guidelines came out for the treatment of PTLD. The new recommendations are to have 4 weeks of Rituximab and 4 cycles of R-CHOP. The doctor said I probably would have gotten about 6 cycles of R-CHOP since the cancer was extremely aggressive and because I "handled chemo so well."
I didn't feel as though I handled chemo that well but I guess I don't really have anyone to compare myself to. Two extra cycles of chemo in retrospect wouldn't have changed that much. Well, it would have been two fewer hospital admissions, two fewer "Am I going to die from this"-feeling fevers, and less white-blood-cell-growing pain, so that would have been nice. But now I feel more confident that they got all of the cancer cells with the 8 cycles.
I'm personally concluding that "death by cancer" is now at the bottom of my "how will I probably die" list. Rejection and/or infection has bumped back up to the #1 spot!
Sunday 8 April 2018
Crafts: Oven Mitts and Apron
I've been on a sewing roll! Apparently once I get started with ideas, it's hard to stop.
I finished my kitchen set with the Hawaiian print fabric! After making prototypes with the fun vegetable fabric to work out the mistakes, I finally made the official set. It's so much more stressful when you actually care about the fabric and only have two yards.
The Hawaiian print apron is reversible because that's what Isaiah asked for. I guess so he can choose the fabric side based on his mood, maybe? Or maybe to match his outfit that day. We saw reversible print ones at a market in Hawaii so I guess the idea stuck.
After looking at oven mitt patterns online, I ended up tracing the oven mitt we have and using that to reverse engineer a pattern. I top stitched a grid to attach the fabric to the heat-resistant fabric. Then I cut out two mitt shapes, sewed strips to hide the edges, added a hanging loop, sewed the two mitts together, turned inside out, and voila! A way to pull things out of the oven without burning myself.
The pot holders were much easier, I just used the extra pieces that were already top stitched and sewed them together with some bias-type fabric I made.
Now I have two aprons after never owning an apron before in my life. The current struggle is to remember to wear it before I start baking instead of after I already have flour all over my pants.
I'm thinking about making a tea cozy and maybe one of those giant double oven mitts with the extra heat resistant fabric I have. I'm not really sure what else to do with it. I don't need more oven mitts. The six I now have seems quite excessive.
I finished my kitchen set with the Hawaiian print fabric! After making prototypes with the fun vegetable fabric to work out the mistakes, I finally made the official set. It's so much more stressful when you actually care about the fabric and only have two yards.
The Hawaiian print apron is reversible because that's what Isaiah asked for. I guess so he can choose the fabric side based on his mood, maybe? Or maybe to match his outfit that day. We saw reversible print ones at a market in Hawaii so I guess the idea stuck.
After looking at oven mitt patterns online, I ended up tracing the oven mitt we have and using that to reverse engineer a pattern. I top stitched a grid to attach the fabric to the heat-resistant fabric. Then I cut out two mitt shapes, sewed strips to hide the edges, added a hanging loop, sewed the two mitts together, turned inside out, and voila! A way to pull things out of the oven without burning myself.
The pot holders were much easier, I just used the extra pieces that were already top stitched and sewed them together with some bias-type fabric I made.
Now I have two aprons after never owning an apron before in my life. The current struggle is to remember to wear it before I start baking instead of after I already have flour all over my pants.
I'm thinking about making a tea cozy and maybe one of those giant double oven mitts with the extra heat resistant fabric I have. I'm not really sure what else to do with it. I don't need more oven mitts. The six I now have seems quite excessive.
Protypes!
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| I'll be thinking of Hawaii every time I bake. |
Sunday 1 April 2018
Happy Easter!
Happy Easter!! I hope everyone is having a great holiday with friends and/or family and tons of food and chocolate.
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| Easter cards I made! |
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| I've been practicing my calligraphy with guidance from a few library books. |
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| It takes much longer to write out cards this way. |
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| An artsy shot of my practice sheets. |
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