Monday 31 October 2016

Happy Halloween!

Happy Halloween!! Hope everyone has a safe and spooktacular time! I'm in Halifax for a few days so I'll be spending the night handing out candy at a friends house. Or maybe just eating candy instead. I have a bone density scan tomorrow so figured I would come up for a few days rather than drive 4 hours for a 10 minute appointment on Tuesday.

Bone density scans are routinely done on everyone with CF every 3-5 years but post-transplant, it becomes a yearly event. On top of the problems absorbing calcium and nutrients from food, the steroids and anti-rejection medication are really hard on the bones. So it's important to check density levels consistently.

I already take a medication to strengthen my bones/prevent osteoporosis as a scan many years ago showed I had some 'osteopenia' (basically borderline osteoporosis) in my lower back. The pill is weekly so I use to always forget to take it. I remember now as I put it in my pill sorter but it's suppose to be taken a half hour before food and I never really follow that as I get hungry. So I'm not really sure if it's working but I wasn't told last year that my bones were getting worse so maybe it's doing something. I'm hoping that since I've been pretty consistent with doing weight exercises, that'll be good for my bones as well. Seeing as how clumsy I am, I really don't want my bones to break easily.
<My pumpkin! 

Wednesday 26 October 2016

Exercising.

Happy 23 months lungiversary to me! Can you believe in one month it'll have been 2 years?! I sure can. 

I mentioned briefly on my increased lung function post that I've been jogging a lot the past month. I've actually been really good at exercising regularly since stopping chemo. I've been jogging on and off since June but for the past month or so, I've been trying to be more consistent about it. I started out with 30 second intervals as I was afraid my knee would bust out on me like it did last summer. I've been wrapping it and so far, so good. I blame my knee but 30 seconds was about all the rest of my body could handle at the time too.

After all summer, I've built up to one minute jogging/walking intervals this past two weeks which is pretty good for me. I'm wheezing by the end of it but I can last 20 minutes. Although one min intervals is basically the first step of all the 'couch to 5km' programs which is less than encouraging. So now I'm going to try and build up at the same rate as those programs and in 8 weeks I'll be running 5km! Or something like that. That would mean increasing to 90 seconds this week which, as I currently check my timer around the 50 sec mark, I'm not super confident in my ability to do. I may end up sticking with my 5 or 10 second increases for now. I'll get there eventually.

On my none jogging days, I've been lifting weights in our little sun room. That has also been going well. I don't change up my routine very often but while it's boring, I can do it all pretty quickly as I don't have to think of which exercise comes next. I think I am getting stronger in small intervals which is really encouraging. It's such a nice change to feel healthy and strong again.

Great job me!

Monday 24 October 2016

Cards, cards, cards!

For the past week, (actually, it started the week I spent at Amys), I've been madly making Christmas cards. I signed up to sell them at a Springhill Christmas craft fair on Nov 5th and have been cutting and gluing ever since. I have no idea how well attended this craft fair is as it's not the 'big' Springhill one (I'll be in Toronto during the large community center fair otherwise I would try to sell some there) so I have no clue how many cards to make. I just hope I can sell enough to make my 10$ table fee back.

And then I don't know which designs people are going to like. I've been harassing people all week about which designs they like best to try and get an idea of what people would buy. I hope my and Amys friends are representative of the Springhill population. Whatever I don't sell I'll either save and send next year or see if anyone else wants to buy a fun Christmas card.

My 8 different options! The mittens say "Merry Christmas", "Happy Holidays", and 'Happy Hanukkah'.

Sunday 23 October 2016

Goodbye garden

We pulled up the last of the garden today. The pepper plants were still hanging on a bit but everything else was very much dead. We got so many tomatoes from our plants, it was incredible. The teens liked to throw the ripe tomatoes at each other but I picked all ours when they just started to turn and ripened them inside so we didn't loose too many to teenage shenanigans. They're now salsa-d (that should really be a verb) and bottled in our cold cellar.

And the ground cherries! It was such a good summer for them. They totally took over the plot. I can't believe the plants I started from the seeds I saved from the previous year, grew so well. Fingers crossed it can happen again next year. I ended up freezing today's haul.

One hald-dead ground cherry plant. Most of the ground cherries were green  but a lot were ripened okay.
One little flower holding on.

Friday 21 October 2016

Job

I got the library job! Thanks for everyones well wishes, you're looking at the new Springhill library clerk. I can check out your books one day a week and every other Sat.

I guess this means the interview went well. I always find it hard to tell when walking out if I did okay. They asked me to name a bunch of books in various genres and I could name a few romance, mystery, and sci-fi authors but not a single western one or book title. Too bad they didn't ask me about fantasy authors though, I would've done well in that category.

I'm pretty excited and can't wait to start training next Wednesday. I'll be surrounded by books!

Thursday 20 October 2016

Improving lung function!

I had my monthly lung function test today and my fev1 was 2.04 or 71%!!!! Since recovering from the cancer, it has been holding steady around 64% so I figured that was as high as it was going. That's where I plateaued last year before the cancer so it seemed about right.

And now, for some reason, it's jumped 6%! It hasn't jumped with my microspirometer at home (not that I really get consistent numbers with that). I think the real test will be to see if it can be repeated next month or if I was having a fluke good day or maybe the machine was off. But I still think it's a cause to celebrate. I really didn't think my lung function would improve anymore.

I'm trying to figure out what I've done differently this past month. I feel like I'm exercising about the same but I have been jogging three time a week instead of the hiking and cycling I was doing all summer. Maybe jogging slowly for one minute spurts is better for the lungs than cycling? I guess it does get my heart rate up a lot faster. And maybe the hyperventilation-feeling is good for lung strengthening? The sound of my post-jog strangled breathing made Amy a bit concerned one day last week as she was convinced I was going to fall over in her kitchen. But now I can say I was improving my lung function. Hurray!

Wednesday 19 October 2016

Job Interview!

I have a job interview tomorrow! Eek!! I haven't been to an interview in forever. I better find some good answers for my greatest strengths and weaknesses and a time I had to deal with conflict. And maybe some of my favorite authors as it's a library job? Job interviews are the worst.

The job itself is at the Springhill library for a few hours a week. I thought it would be a great low-key job for getting back to work. It's also just up the hill so the commute would be very short. As in, I will walk up the hill.

Anyway, fingers crossed.


Sunday 16 October 2016

Speaking at fundraisers

Sorry for totally going MIA this week. I was in NB, spending the week with my family. We made Christmas cards, worked on some Christmas presents, and ate all of Mom's food. Amy and I also managed to make it skating, horse back riding, and swimming with Mom one night. After the week ofactivities, I'm ready for a day of relaxing.

Last night all of us drove to a CF research fundraiser in Richibucto where Amy and I gave a 5 minute spiel about what it's like to have CF. It was a long drive for such a quick speech but I guess it's always better for people to hear from someone living with the disease.

We never really know what to say at these things. There is a balance between talking about the facts of CF and research and telling our life stories. More people want to hear about our life stories but without the background of knowing what CF is as a disease and how treatment has progressed over the last 50 years, it doesn't make as much sense.

And currently, as my CF experience is about living post-transplant and Amy is in that limbo between being too healthy to be listed but yet too sick to work, both of us are more focused on transplants than aerosol masks or digestive enzymes. I felt like maybe we should've been handing out the organ donation flyers at the end of our talk.

I hope they raised enough money for all the work that went into the event to have been worth it. Fundraising is so much work. Not that I'm involved but watching Dad help out and organize events is exhausting. Not only setting up the events themselves but then coming up with new ideas all the time. There are so many good charities that organizations are in such a competition for money that it seems like they need to come up with something bigger and better every time. CF needs to find something like the cancer societies 'shave your head' fundraisers, those seem to always do well.

Except as it's an invisible disease, there really isn't that much exciting to do. "Drink this boost for CF!" "Breathe through this straw for CF!" "Have a coughing fit for CF!" None of those sound appealing. I'll keep brainstorming.

Anyway, thank you to all the CF chapter volunteers who work so hard every year to raise money and support us and CF research! It's very much appreciated.

Saturday 8 October 2016

Happy Thanksgiving!!!

Happy Thanksgiving to all! I hope everyone has a great celebration! As always, I'm thankful for my health. Because of it, I hiked up the Wentworth skihill and got to see the amazing fall colours. We live in a beautiful part of the world.

Everything was pretty!
If you look really hard, you can see the ocean.
My phone's camera does not do it justice.

Friday 7 October 2016

Trying not to get sick

Now that it's October, I've become super paranoid that something terrible is going to happen health-wise. In October 2014, my lungs seriously started failing. Last October was when I got my first blood transfusions for my low hemoglobin before the doctors discovered the underlying cause of cancer.

So yeah, I'm slightly concerned that something is going to happen this year too. I mean, I really hope it doesn't and that it was just a weird coincidence that my health issues happen in the fall. But I always did have a trend of getting 'back to school/cool weather' cold in Sept or Oct so I wouldn't be surprised if that trend continued. I just really hope my October illness can limit itself to something like a minor head cold. That would be acceptable.

Also, if everyone could get their flu shot, that would be swell. I know they're often not super effective but let's do what we can to not pass on infections. Thanks.

Wednesday 5 October 2016

White count is good!

My white count is good. Hurray! I could've taken the subway in Montreal afterall! I can go into crowds! Hang out with sick people! (ok, so not really, I still need to be super careful but at least it isn't zero). 

It must've been the chemo drugs still in my system that crashed my count out in May. I was really hoping that was the case as I didn't want to have to try new medication. My main meds have been fairly stable for the past bit and I like it that way.

My vitamin levels still seem to be all over the place though. There is something about the transplant meds that increase the absorption of certain vitamins, or maybe it's the body being unable to get rid of the vitamins, either way, it's a very gradual process. I was told that it was common for people with CF to have a spike in their Vit E post-transplant but that hasn't happened to me yet. I did have a spike in my Vit A recently so I've stopped my multiviatmin as that's my main source of Vit A. No more Flintstones for me! It's great to stop taking them, they're so gross.

I thought two years post-transplant that I would be done with all the medication and vitamin changes but there always seems to be little adjustments that need to be made. I had restarted my iron in May after stopping it while on chemo and was told last week to stop it again. I guess my body is absorbing enough on its own. No complaints from me, I would like to take as few pills as possible.


Monday 3 October 2016

Montreal!

Well, I had a busy week/weekend. We drove to Halifax on Wednesday to see David and Cindy off to New Zealand, where they'll be bumming around/herding sheep/picking kiwis for the next year (I don't actually know what they'll be doing, but neither do they, so I figure it'll be something with sheep or fruit).

Then on Thursday, Amy and I zoomed off to Montreal for the Adele concert Friday night. We spent the day wandering around downtown Montreal. We somehow did the "Allison's tour of Old Montreal parking lots." I had the map and somehow we ended up walking down a pier in Old Montreal that the map said was the 'look off.' It was pretty at the end of the pier but to get there, we walked through a parking garage. It was very strange as we saw everyone on the other pier walking by trees and other much more picturesque sights. Ah well.

Church!
The 'look off'

Another church!
The concert was amazing! Adele was so good and the best part was that we didn't have to sit through a terrible opening act. Our seats overlooked the back stage so they ended up being way better than we had expected. It was all amazing. The only downside was when we left, we were all herded out into some construction zone that was fenced in and no one could move. We all shuffled to the right, then the left, with no one knowing what was happening. Eventually, Amy and I gave up and walked back up the stairs to where the box seats were. It was much easier to get out from there but Amy's lungs were not happy with all the stairs.

Waiting for Adele!!
It was a super quick trip to Montreal as we came home on Saturday. Needless to say, all the driving and walking around Montreal made us both quite tired Sunday.

I realized it somehow became October over all this driving around. How is it October already?!

I had my bloodwork this morning so I'll find out this afternoon or tomorrow if the antibiotic is working or if my white count has dropped off. I really hope it's been okay seeing as I was in a giant crowd on Friday. I washed my hands all the time but that still doesn't prevent against everything. I really don't want to get sick.