I'm on vacation!
I'm off to PEI for a week and then to Newfoundland to tackle Gros Morne.
Hope everyone has a great last few weeks of August!
Saturday, 20 August 2016
Friday, 19 August 2016
Hematology Doctor Appt
Just to expand a bit on the post from yesterday. The doctor appointment went very smoothly and quick this time around. No waiting for 3 hours, probably because this time I was prepared for a long wait.
The nurse checked my blood pressure and went over all my bloodwork and said that it all looked good. My white count and hemoglobin have recovered from the chemo.
The doctor reviewed the PET scan results and I still have a spot on my right lung but it's shrunk from 11 mm from the last scan to 8 mm and didn't show any signs of reacting to the sugars which means it's not cancerous. I also still have scarring in my lungs which isn't a surprise to anyone.
The rest of my organs looked normal and the spot that was on my hip last time is cleared. No lymph nodes to be found anywhere. Woohoo!
The doctor then felt around my neck and armpits for nodes but seeing as I had no lumps when I did have cancer, I'm not sure what she expected to feel when I just had a clean scan.
The doctor said that it's about a 50/50 chance of the cancer returning and because I had the large cell type of lymphoma, she didn't recommend any sort of preventative medication.
I'll see her every 3 months for the next year and then every 4 months during year two and 6 months until year 5, then yearly. Most people would be followed by her only for the next 5 years but she's stuck with me forever. But no follow up CT scan until the '1 year after treatment' mark (about 9 months from now) which is a bit surprising. I had read online they did CT scans every 3 months for the first year after treatment but I guess sometimes the internet lies.
That's about all the information. It's a huge relief to have a conclusively clean scan. I know the last one basically showed there was no cancer but it wasn't a 100% clear scan. Now it is! I feel much better about it this time around. The doctor said that the longer the cancer doesn't come back, the decreased chance that it'll return at all.
I guess this means I'm technically in remission, even though the doctor never said those words. She just said that the scan was clean and that I, "responded to treatment better than anyone ever expected." Mom said I need to put that on my resume.
The nurse checked my blood pressure and went over all my bloodwork and said that it all looked good. My white count and hemoglobin have recovered from the chemo.
The doctor reviewed the PET scan results and I still have a spot on my right lung but it's shrunk from 11 mm from the last scan to 8 mm and didn't show any signs of reacting to the sugars which means it's not cancerous. I also still have scarring in my lungs which isn't a surprise to anyone.
The rest of my organs looked normal and the spot that was on my hip last time is cleared. No lymph nodes to be found anywhere. Woohoo!
The doctor then felt around my neck and armpits for nodes but seeing as I had no lumps when I did have cancer, I'm not sure what she expected to feel when I just had a clean scan.
The doctor said that it's about a 50/50 chance of the cancer returning and because I had the large cell type of lymphoma, she didn't recommend any sort of preventative medication.
I'll see her every 3 months for the next year and then every 4 months during year two and 6 months until year 5, then yearly. Most people would be followed by her only for the next 5 years but she's stuck with me forever. But no follow up CT scan until the '1 year after treatment' mark (about 9 months from now) which is a bit surprising. I had read online they did CT scans every 3 months for the first year after treatment but I guess sometimes the internet lies.
That's about all the information. It's a huge relief to have a conclusively clean scan. I know the last one basically showed there was no cancer but it wasn't a 100% clear scan. Now it is! I feel much better about it this time around. The doctor said that the longer the cancer doesn't come back, the decreased chance that it'll return at all.
I guess this means I'm technically in remission, even though the doctor never said those words. She just said that the scan was clean and that I, "responded to treatment better than anyone ever expected." Mom said I need to put that on my resume.
Thursday, 18 August 2016
No cancer!!
No cancer! Hurray!!!
I'm having a games night so I'll explain more later but the PET scan was conclusively cancer free this time.
Party!!
I'm having a games night so I'll explain more later but the PET scan was conclusively cancer free this time.
Party!!
Wednesday, 17 August 2016
Hiking Fundy Circuit
PET scan results tomorrow! We're driving to Halifax bright and early to find out if my scan was clear. I just want a conclusive scan! None of this, "you have something showing on your hip that makes no sense" nonsense. I didn't fall or pull anything before this scan so *fingers crossed* I should be okay. At least it should be conclusive one way or another.
To keep myself preoccupied to not think about the scan for the past week, I've been hiking. And today I've been recovering from hiking. Over Monday and Tuesday, Isaiah, Mom, Dad, and I (and Amy for the last afternoon), went around the Fundy Circuit. It's 48km and we hiked 46km of it. Cheating for 2km where we got a ride from Amy up the *very boring* Laverty Rd, which connects two trails.
The first day was mostly along the coast, starting at Headquesters until we turned inland, climbed down and up a terrible ravine, and back to the car at Bennett Lake. The second day was from Bennett Lake, around the lakes, and then down Upper Salmon River to Headquarters.
I'm so proud of myself. We did 28km the first day which, I think, is the longest I've ever hiked in one day. Who would've thought that was possible two years ago when I was hobbling with my oxygen cart to the bus stop? Not me.
To say that organ donation can improve a life is a bit understated.
All I could think about at the end yesterday, besides the pain in my feet, was how amazing it was that I made it. My feet were on fire and my legs were sore but it wasn't that sharp pain. It was that sore feeling that makes me know that I've pushed my body.
I hope I never forget how much of a privilege it is to get that feeling.
Having spent years where I would hyperventilate and throw up if I went to fast or too far with my lungs getting tired long before my legs, having my legs tire first is remarkable. I know it's almost been two years since my transplant but I still haven't gotten over the sense of wonder I get when I can push myself to new levels or have new experiences.
Everything still feels like I won the transplant lottery.
After this week, the 16km of Gros Morne is going to be like a stroll in the park, right? Right.
Hiking Pics! It rained most of the afternoon of the first day so we didn't take very many pictures.
To keep myself preoccupied to not think about the scan for the past week, I've been hiking. And today I've been recovering from hiking. Over Monday and Tuesday, Isaiah, Mom, Dad, and I (and Amy for the last afternoon), went around the Fundy Circuit. It's 48km and we hiked 46km of it. Cheating for 2km where we got a ride from Amy up the *very boring* Laverty Rd, which connects two trails.
The first day was mostly along the coast, starting at Headquesters until we turned inland, climbed down and up a terrible ravine, and back to the car at Bennett Lake. The second day was from Bennett Lake, around the lakes, and then down Upper Salmon River to Headquarters.
I'm so proud of myself. We did 28km the first day which, I think, is the longest I've ever hiked in one day. Who would've thought that was possible two years ago when I was hobbling with my oxygen cart to the bus stop? Not me.
To say that organ donation can improve a life is a bit understated.
All I could think about at the end yesterday, besides the pain in my feet, was how amazing it was that I made it. My feet were on fire and my legs were sore but it wasn't that sharp pain. It was that sore feeling that makes me know that I've pushed my body.
I hope I never forget how much of a privilege it is to get that feeling.
Having spent years where I would hyperventilate and throw up if I went to fast or too far with my lungs getting tired long before my legs, having my legs tire first is remarkable. I know it's almost been two years since my transplant but I still haven't gotten over the sense of wonder I get when I can push myself to new levels or have new experiences.
Everything still feels like I won the transplant lottery.
After this week, the 16km of Gros Morne is going to be like a stroll in the park, right? Right.
Hiking Pics! It rained most of the afternoon of the first day so we didn't take very many pictures.
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| Starting off with loads of energy! |
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| Mom trying to see a porpoise at Matthew's Head. |
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| Classic NB. |
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| Day 2! A bit less energy. |
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| Around the lake! |
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| Through the bog. |
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| Into the woods. |
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| Across the river. |
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| Across another river. |
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| And done! |
Thursday, 11 August 2016
PET Scan
I had my PET scan today. The one I had to cancel my trip to Newfoundland for. And I don't find out the results until next Thursday so no asking.
The scan went fine, there were no nursing students around this time to ask me a list of annoying questions or go through the scan step by step. Instead I had the same nurse as last scan who remembered me so she moved everything along quite quickly. She got the IV in the first try which was excellent. As there were no students around, she didn't use the giant lead roller screen for the radioactive sugar injection meaning that process went much faster this time too. Seeing as the syringe is in a lead case which is then place in a box, I guess she felt that was enough radiation protection.
After the injection, I read for 45 minutes and then spent 20 minutes snoozing in the scanner. It's really hard not to fall asleep in the scanner. The room is kind of chilly so after laying down, the nurse cocoons you in warm blankets, turns off the light, and gives a reminder to close the eyes so as not to stare into the laser. How could anyone stay awake under those conditions? I was a bit worried I would jerk awake halfway through and ruin the scan results but then I fell asleep. I don't think that happened though as after a doctor quickly reviewed everything, they sent me on my way.
Now home for the weekend, hopefully we can make it for a hike in Fundy if it doesn't rain too hard.
The scan went fine, there were no nursing students around this time to ask me a list of annoying questions or go through the scan step by step. Instead I had the same nurse as last scan who remembered me so she moved everything along quite quickly. She got the IV in the first try which was excellent. As there were no students around, she didn't use the giant lead roller screen for the radioactive sugar injection meaning that process went much faster this time too. Seeing as the syringe is in a lead case which is then place in a box, I guess she felt that was enough radiation protection.
After the injection, I read for 45 minutes and then spent 20 minutes snoozing in the scanner. It's really hard not to fall asleep in the scanner. The room is kind of chilly so after laying down, the nurse cocoons you in warm blankets, turns off the light, and gives a reminder to close the eyes so as not to stare into the laser. How could anyone stay awake under those conditions? I was a bit worried I would jerk awake halfway through and ruin the scan results but then I fell asleep. I don't think that happened though as after a doctor quickly reviewed everything, they sent me on my way.
Now home for the weekend, hopefully we can make it for a hike in Fundy if it doesn't rain too hard.
Saturday, 6 August 2016
No Newfoundland
After two weeks of waiting and harassing the booking people in Halifax, we've had to cancel our trip to Newfoundland next week. Well, rather Mom and Amy had to cancel everything as they had booked it all but still...argh!
A bit of the back story to this trip, when visited David and Cindy on PEI in June, I mentioned briefly that I really wanted to hike Gros Morne and had been thinking of going to Newfoundland this summer.
I've been to the Gros Morne park a few times but have never actually been able to hike up the mountain. When we went as a family 20 years ago, Mom and Dad thought David and I were too young to climb it so only Dad and Amy went. Then, when we were back after David and I's cycling trip, I was much too tired to hike anywhere and stayed at the campsite cooking supper. And when Amy and I visited a few years ago, my lungs were too crapped out to hike more than the shortest of trails. And even then, the humidity forced us off one of the trails. Three visits and not one hike up the mountain. For some reason it keeps eluding me.
So this year is my year! I will climb the mountain! The literal mountain, not a figurative one. Seeing as it's the only concrete thing I said pre-transplant that I would like to do post, it would be nice to be able to go. I mean, I have other goals like 'travel around' and 'do stuff' and 'maybe work at some point' but that's all much more vague than 'hike Gros Morne.'
Mom and Amy had ran with my brief mentioning about Newfoundland in June and booked everything. Unfortunately, it was before I got my PET scan dates. I got my dates two weeks ago and as it works out, my scan is in the middle of the time we had planned to go. I've been trying to switch the date to an earlier one but, no surprise, people tend not to cancel scans that determine if they have cancer. The last time I talked to the booking woman, she basically just laughed at me and said they only schedule 12 people a day so there isn't much room to switch things around.
I don't blame people for not cancelling, I also didn't want to cancel the scan, so Newfoundland will just have to wait for me (hopefully to happen at the end of the month), and instead I get a short trip to Halifax.
[Just an FYI, I don't get the scan results until my doctor's appointment on the 18th. It's going to be an anxious week and half of waiting.]
A bit of the back story to this trip, when visited David and Cindy on PEI in June, I mentioned briefly that I really wanted to hike Gros Morne and had been thinking of going to Newfoundland this summer.
I've been to the Gros Morne park a few times but have never actually been able to hike up the mountain. When we went as a family 20 years ago, Mom and Dad thought David and I were too young to climb it so only Dad and Amy went. Then, when we were back after David and I's cycling trip, I was much too tired to hike anywhere and stayed at the campsite cooking supper. And when Amy and I visited a few years ago, my lungs were too crapped out to hike more than the shortest of trails. And even then, the humidity forced us off one of the trails. Three visits and not one hike up the mountain. For some reason it keeps eluding me.
So this year is my year! I will climb the mountain! The literal mountain, not a figurative one. Seeing as it's the only concrete thing I said pre-transplant that I would like to do post, it would be nice to be able to go. I mean, I have other goals like 'travel around' and 'do stuff' and 'maybe work at some point' but that's all much more vague than 'hike Gros Morne.'
Mom and Amy had ran with my brief mentioning about Newfoundland in June and booked everything. Unfortunately, it was before I got my PET scan dates. I got my dates two weeks ago and as it works out, my scan is in the middle of the time we had planned to go. I've been trying to switch the date to an earlier one but, no surprise, people tend not to cancel scans that determine if they have cancer. The last time I talked to the booking woman, she basically just laughed at me and said they only schedule 12 people a day so there isn't much room to switch things around.
I don't blame people for not cancelling, I also didn't want to cancel the scan, so Newfoundland will just have to wait for me (hopefully to happen at the end of the month), and instead I get a short trip to Halifax.
[Just an FYI, I don't get the scan results until my doctor's appointment on the 18th. It's going to be an anxious week and half of waiting.]
Wednesday, 3 August 2016
Garden update
The garden has exploded with green! Our carrots keep being eaten by something, either a carrot-loving critter or child, I'm not sure. But everything else is doing very well, we've been eating lettuce non-stop and we had our first pea! The poor tiny tim tomatoes are being overgrown by everything else. Perhaps next year, they'll need their own patch of garden.
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| A giant tomato plant that's also taking over everything. |
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| The poor tiny tim. |
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| Our first cucumber! |
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| So not from the garden but from the woods during the walk to and from the garden |
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| Sad carrot. |
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| So much green! |
Tuesday, 2 August 2016
Hiking the Kenomee Canyon Loop (Economy falls)
We survived our back-country hike around the loop! We made it 21km and now we're both very tired.
We didn't see any of the waterfalls though as it turns out that the campsites/waterfalls are around 1km from the trail, mostly uphill. We tried to find the first one but after hiking for awhile and not finding anything, we turned back. I was determined we would walk down to see the 'Economy Falls' as it's the waterfall near the entrance but by the time we got there, I didn't have any energy left to climb back up the giant hill and just wanted to get to the car.
The trail itself ranged from a wide four-wheeler trail to climbing over giant boulders to leaping over streams (by leaping, I mean, half-falling into the streams). It was better marked than I had anticipated after reading reviews online. There were a few points where the trail crossed four wheeler paths but because we knew to look for the markers, it was pretty easy to follow. The worst part of the trail was getting to the actual campsite by the lake as it was clearly less used than the main trail and we were both tired.
The campsite was nothing more than a slightly leveled patch of ground with a door-less outhouse nearby. But it was a nice slightly leveled patch of ground.
My only real concern was once we ran out of water from home and had to drink from the LifeStraw or the boiled lake water. The people on the intense facebook transplant group would not approve. I understand the risk and while some people only drink filtered or bottled water (not that bottled water is regularly tested), there wasn't any way to carry in enough water for a two day hike. We boiled the water according to all the guidelines I read, so if there were any parasites in the water, I'm pretty sure they died. I think I'm okay but I guess I'll find out in a few days.
All in all, it was a good hike and I think I'll be quite sore tomorrow.
We didn't see any of the waterfalls though as it turns out that the campsites/waterfalls are around 1km from the trail, mostly uphill. We tried to find the first one but after hiking for awhile and not finding anything, we turned back. I was determined we would walk down to see the 'Economy Falls' as it's the waterfall near the entrance but by the time we got there, I didn't have any energy left to climb back up the giant hill and just wanted to get to the car.
The trail itself ranged from a wide four-wheeler trail to climbing over giant boulders to leaping over streams (by leaping, I mean, half-falling into the streams). It was better marked than I had anticipated after reading reviews online. There were a few points where the trail crossed four wheeler paths but because we knew to look for the markers, it was pretty easy to follow. The worst part of the trail was getting to the actual campsite by the lake as it was clearly less used than the main trail and we were both tired.
The campsite was nothing more than a slightly leveled patch of ground with a door-less outhouse nearby. But it was a nice slightly leveled patch of ground.
My only real concern was once we ran out of water from home and had to drink from the LifeStraw or the boiled lake water. The people on the intense facebook transplant group would not approve. I understand the risk and while some people only drink filtered or bottled water (not that bottled water is regularly tested), there wasn't any way to carry in enough water for a two day hike. We boiled the water according to all the guidelines I read, so if there were any parasites in the water, I'm pretty sure they died. I think I'm okay but I guess I'll find out in a few days.
All in all, it was a good hike and I think I'll be quite sore tomorrow.
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| Off we go! |
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| Stopping for a water break. |
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| Tenting time! |
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| Cooking supper. |
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| The lake! |
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| The stone step part of the trail. |
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| Almost done! |
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| Yay made it! |
Monday, 1 August 2016
Off hiking!
Happy August!
Isaiah and I are off on a backwoods overnight camping trip in Economy. It's not the best timing as I'm on the aerosol masks which means I'll be skipping tonight and tomorrow morning's mask but I've been wanting to do this loop for months and I now feel physically fit to carry a heavy backpack. So, I'm going.
I had a portable aerosol machine with a battery that I used during David and I's cycling trip across Canada for when we camped in the woods but both the battery and machine have long since died. I've thought about buying a replacement but seeing as I'm on aerosol masks infrequently now, it doesn't seem worth it. Although it would be nice for trips like this so I wouldn't have to skip masks.
Maybe it would be worth it for camping too so I wouldn't have to sit in front of the bathroom with an extension cord doing my mask (like Amy and I did last week while camping in Amherst Shore). On those occasions, I also wish I had a battery operated machine but seeing as I have found a work around to non-powered camp sites, I've done nothing. I guess it hasn't annoyed me enough to the point where I'll buy one so that is basically my decision made.
Wish us luck on our hike! I hope I don't get carried away by the mosquitoes!
Isaiah and I are off on a backwoods overnight camping trip in Economy. It's not the best timing as I'm on the aerosol masks which means I'll be skipping tonight and tomorrow morning's mask but I've been wanting to do this loop for months and I now feel physically fit to carry a heavy backpack. So, I'm going.
I had a portable aerosol machine with a battery that I used during David and I's cycling trip across Canada for when we camped in the woods but both the battery and machine have long since died. I've thought about buying a replacement but seeing as I'm on aerosol masks infrequently now, it doesn't seem worth it. Although it would be nice for trips like this so I wouldn't have to skip masks.
Maybe it would be worth it for camping too so I wouldn't have to sit in front of the bathroom with an extension cord doing my mask (like Amy and I did last week while camping in Amherst Shore). On those occasions, I also wish I had a battery operated machine but seeing as I have found a work around to non-powered camp sites, I've done nothing. I guess it hasn't annoyed me enough to the point where I'll buy one so that is basically my decision made.
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| Just chillin by the bathrooms... |
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