The Walk to make CF History was today! Thanks to everyone who donated to the cause and who came out in the cold yesterday to our yard sale in Petitcodiac. We appreciate everything that was donated and our team raised over 2500$. Yay!
Amy and I gave a little speech before the walk about having CF. We always feel that our speeches are a bit of a bummer but today especially so. I think it felt like more of a downer today because there were some kids there with CF and it was like we were telling them "You are going to go downhill. Enjoy your lung function now while you can. We are your future! Beware! P.S. Be a donor!" I mean, we don't say those words exactly and our speech is definitely more transplant-focused than perhaps someone elses would be. I guess we have to talk about their own experience and ours is at the "transplant" stage of having CF.
The only difference this year was that they set up a 5km run because they're trying to draw some new people from outside the usual families. But Isaiah and I ended up being the only ones running the 5km. Ah well. We still enjoyed it and I finished in under 40min! It wasn't quite as exhausting as the Transplant Trot but I'm still pretty tired sitting here tonight. I push myself much harder on these more official runs than I do when I'm outside on the trail by myself.
All in all, a great walk even though we didn't win any of the prizes. Oh well, there's always next year!
Sunday, 28 May 2017
Sunday, 21 May 2017
Trip!
I finally got my trip cancellation insurance money back! What a huge relief is it to not have to think about it anymore.
You're probably wondering "what trip?" My planned Aruba trip in November 2015. The one I had to cancel because I was in the hospital being diagnosed with cancer. The one that was suppose to be my one-year post-transplant celebration. The trip that the rest of my family still went on without me because it seemed ridiculous to ruin their vacation just because I was stuck in the hospital. That one.
It's been a long fight with the company that I wasn't expecting because when I had to cancel my trip to Spain in 2013 due to hospitalization, I had zero issues. I sent in my paperwork and receipts and got my money back in 6-8 weeks. No questions and one form for the doctor to fill out. And that was related to my pre-existing condition so I was expecting a fight. This time was very, very different.
The day I was given my diagnosis and was told not to go to Aruba, Isaiah called United (United really is the worst but it was the cheapest) to set up the claim. We thought if we didn't delay, it would be easier. United sent the information to their subsidiary Allianz, who told him where to send the appropriate paperwork. We had that paperwork filled out by a doctor and waited two months to find out the claim was rejected because they said my doctor's visit several months before the trip counted as "active treatment."
I was so upset. My doctor visits are regular and there are often slight medication changes but my doctor had still said I was okay to travel. I made Isaiah deal with them because every time I would get on the phone to explain to the representative that my cancer was not related to my general check-up, I would start crying. I'm one of those people who cry frustration-tears and it didn't help that I was also in the middle of chemo so was incredibly emotional at the time. I didn't have any emotional energy to fight with an insurance company.
We appealed their decisions with more paperwork from a different doctor. Waited many months. Denied again.
Appealed their decision again with even more paperwork from the doctor. Waited many more months. Denied again.
Six months ago my doctor wrote a even stronger letter to the company and we weren't immediately denied, they simply requested more information. They asked for my medical file to be mailed to them. My medical file. Isaiah called and asked "her entire medical file?!" The man clarified that they just wanted the information from the initial hospitalization when my trip was cancelled.
I filed a request to the medical records section of the hospital for all my paperwork from my November-December admission in 2015. The woman asked if I wanted to have it printed and mailed to me. The cost was simply 40$ for the first 100 pages plus 0.25 cents per additional page plus shipping. The file was over 1000 pages.
The man from Allianz said paper copy was better but they would accept electronic "if we must." At over 250$ and 12% of a tree, I decided "we must email." Also, we have the technology, why do they make things so much more difficult? (I know the answer to that question) I opted for the cheaper option of having it mailed to me on a CD as a PDF instead. Once it showed up, Isaiah decrypted it and emailed the file to the company.
We waited another few months and I received an email saying the medical staff had overturned my initial rejection. I finally have a cheque in my hands (it's in the bank). What a relief. The drama is over.
And so I've booked a trip to Vancouver!!! Yay!!!!! In less than a month Amy and I will be getting on a plane and zooming off to find some mountains and killer whales. I'm unbelievably excited. I love traveling and exploring new places so much. It gives me so much energy. Leaving Atlantic Canada and not going to Toronto for the first time in 5 years!
I picked Vancouver for my first trip because:
1) I've wanted to go back and explore more since I was there cycling with David 9(!) years ago
2) I want to see some killer whales since the last ones I saw were in 1997 when we were there as a family
3) I want to hike all over the mountains
4) it's still in Canada so I have a safety net with good hospitals nearby if something goes wrong.
Amy and I have visited so many places together that being able to travel together again is the final confirmation that I'm healthy. After sitting in the hospital getting texts while she went to London, Germany, and Aruba without me, planning trips together makes me feel like my pre-transplant healthy self. How else to explain it than to say "I'm unbelievably excitement" about a million times.
Amy and Alley Adventure Again!
Without travel insurance for me this time, because if it took a year and half to get it back for getting cancer randomly, I'm definitely not getting it back now.
You're probably wondering "what trip?" My planned Aruba trip in November 2015. The one I had to cancel because I was in the hospital being diagnosed with cancer. The one that was suppose to be my one-year post-transplant celebration. The trip that the rest of my family still went on without me because it seemed ridiculous to ruin their vacation just because I was stuck in the hospital. That one.
It's been a long fight with the company that I wasn't expecting because when I had to cancel my trip to Spain in 2013 due to hospitalization, I had zero issues. I sent in my paperwork and receipts and got my money back in 6-8 weeks. No questions and one form for the doctor to fill out. And that was related to my pre-existing condition so I was expecting a fight. This time was very, very different.
The day I was given my diagnosis and was told not to go to Aruba, Isaiah called United (United really is the worst but it was the cheapest) to set up the claim. We thought if we didn't delay, it would be easier. United sent the information to their subsidiary Allianz, who told him where to send the appropriate paperwork. We had that paperwork filled out by a doctor and waited two months to find out the claim was rejected because they said my doctor's visit several months before the trip counted as "active treatment."
I was so upset. My doctor visits are regular and there are often slight medication changes but my doctor had still said I was okay to travel. I made Isaiah deal with them because every time I would get on the phone to explain to the representative that my cancer was not related to my general check-up, I would start crying. I'm one of those people who cry frustration-tears and it didn't help that I was also in the middle of chemo so was incredibly emotional at the time. I didn't have any emotional energy to fight with an insurance company.
We appealed their decisions with more paperwork from a different doctor. Waited many months. Denied again.
Appealed their decision again with even more paperwork from the doctor. Waited many more months. Denied again.
Six months ago my doctor wrote a even stronger letter to the company and we weren't immediately denied, they simply requested more information. They asked for my medical file to be mailed to them. My medical file. Isaiah called and asked "her entire medical file?!" The man clarified that they just wanted the information from the initial hospitalization when my trip was cancelled.
I filed a request to the medical records section of the hospital for all my paperwork from my November-December admission in 2015. The woman asked if I wanted to have it printed and mailed to me. The cost was simply 40$ for the first 100 pages plus 0.25 cents per additional page plus shipping. The file was over 1000 pages.
The man from Allianz said paper copy was better but they would accept electronic "if we must." At over 250$ and 12% of a tree, I decided "we must email." Also, we have the technology, why do they make things so much more difficult? (I know the answer to that question) I opted for the cheaper option of having it mailed to me on a CD as a PDF instead. Once it showed up, Isaiah decrypted it and emailed the file to the company.
We waited another few months and I received an email saying the medical staff had overturned my initial rejection. I finally have a cheque in my hands (it's in the bank). What a relief. The drama is over.
And so I've booked a trip to Vancouver!!! Yay!!!!! In less than a month Amy and I will be getting on a plane and zooming off to find some mountains and killer whales. I'm unbelievably excited. I love traveling and exploring new places so much. It gives me so much energy. Leaving Atlantic Canada and not going to Toronto for the first time in 5 years!
I picked Vancouver for my first trip because:
1) I've wanted to go back and explore more since I was there cycling with David 9(!) years ago
2) I want to see some killer whales since the last ones I saw were in 1997 when we were there as a family
3) I want to hike all over the mountains
4) it's still in Canada so I have a safety net with good hospitals nearby if something goes wrong.
Amy and I have visited so many places together that being able to travel together again is the final confirmation that I'm healthy. After sitting in the hospital getting texts while she went to London, Germany, and Aruba without me, planning trips together makes me feel like my pre-transplant healthy self. How else to explain it than to say "I'm unbelievably excitement" about a million times.
Amy and Alley Adventure Again!
Without travel insurance for me this time, because if it took a year and half to get it back for getting cancer randomly, I'm definitely not getting it back now.
Sunday, 14 May 2017
Hiking
Happy Mother's Day! We went on our annual Mother's Day hike along the Dobson trail. I say annual hike but really I haven't been on it for many, many years. It was really nice, the bugs were pretty terrible but we moved faster than them so that was fine. Mom picked May flowers and Isaiah picked mushrooms to practice identifying with his new mushroom book. He was looking only, the mushrooms did not go into the supper's risotto.
I'm on the end of a 10 day steroid boost to try and eliminate my annoying cough. The Easter cold is still haunting me but hopefully this will fix it. My cough is getting better but I still have deep coughing fits every once in awhile. It's a fun reminder of how long I take to recover from a mild head cold and how careful I need to be around people.
The first few days of extra steroids, I couldn't focus on much but that's gotten better. I still get a boost of energy in the afternoon and am ravenously hungry most of the time. Hiking yesterday helped burn off some of that energy.
It was our first hike of the year and it felt nice to be in the woods again. Hopefully the first of many hikes to happen this summer!
I'm on the end of a 10 day steroid boost to try and eliminate my annoying cough. The Easter cold is still haunting me but hopefully this will fix it. My cough is getting better but I still have deep coughing fits every once in awhile. It's a fun reminder of how long I take to recover from a mild head cold and how careful I need to be around people.
The first few days of extra steroids, I couldn't focus on much but that's gotten better. I still get a boost of energy in the afternoon and am ravenously hungry most of the time. Hiking yesterday helped burn off some of that energy.
It was our first hike of the year and it felt nice to be in the woods again. Hopefully the first of many hikes to happen this summer!
Sunday, 7 May 2017
Cancer update: Still no cancer!
I had my one year hematology appointment and *drum roll* I'm still cancer-free! Woohoo!!!!
The doctor was fine with the lack of contrast dye on the CT scan so I don't have to go through all the stabbing until the next scan in a year. She called the lung spot from my last scan a "node" and not scarring like I had previously thought but didn't say that it had been cancerous. I assume it wasn't or else they would be doing more frequent scans. Either way, all the leftover little spots are gone and the big spot is practically gone now so that's all excellent news.
We went up to Halifax early so we could celebrate Isaiah's 34th birthday on Tuesday with a delicious sushi supper. Then we spent most of Wednesday wandering around Halifax which we usually don't have time to do. It was great.
Now that all the doctor appointments are over for another few months, Isaiah is starting the job applying/interview process which is stressful for both of us. But mostly for him. I'm trying to just be supportive by asking him a million practice interview questions. He's loving it.
The doctor was fine with the lack of contrast dye on the CT scan so I don't have to go through all the stabbing until the next scan in a year. She called the lung spot from my last scan a "node" and not scarring like I had previously thought but didn't say that it had been cancerous. I assume it wasn't or else they would be doing more frequent scans. Either way, all the leftover little spots are gone and the big spot is practically gone now so that's all excellent news.
We went up to Halifax early so we could celebrate Isaiah's 34th birthday on Tuesday with a delicious sushi supper. Then we spent most of Wednesday wandering around Halifax which we usually don't have time to do. It was great.
Now that all the doctor appointments are over for another few months, Isaiah is starting the job applying/interview process which is stressful for both of us. But mostly for him. I'm trying to just be supportive by asking him a million practice interview questions. He's loving it.
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| Halifax! |
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