Friday, 30 December 2016

It's my birthday!!!


(As part of my attempt to become somewhat of a writer, I wrote the following short essay and pitched it to several websites but never got any response. Because I still like it, I'm posting it here even though I'm sure you already know all this information.)

I turn 30 today. I'm so happy, I had serious doubts that I would ever reach this point. When I turned 25, I wished to be able to make it to my 30th birthday. At times I wasn't sure if I would make it. Yet here I am, turning 30 and loving every second of it.

I was born with cystic fibrosis, a degenerative genetic lung and digestive disease and stayed relatively healthy until I hit my 20s. Then my lungs started to decline. I spent my early 20s in and out of the hospital getting IV antibiotics for infections and fighting off pneumonia.

Shortly after I turned 26, I was told that I was no longer healthy enough to work. That if I took my planned trip to Spain that I would, “return in a body bag.” My lungs were spent out and my only chance of living much longer was to have a double lung transplant. Lung transplants are considered 'end of life treatment' for people with cystic fibrosis as they can extend the life but are such a high risk surgery that are only done when there are no other options.

I spent a lot of the earlier part of the year being scanned, probed, and interviewed. Then waited for doctors to decide if I would be eligible for the chance at a new set of lungs, for a transplant that could extend my life.

I was deemed eligible as the rest of my body was relatively healthy, so I moved to Toronto with my partner, Isaiah (as no one does lung transplants in Eastern Canada) and spent my 27th birthday in our tiny one bedroom apartment waiting for the call that lungs were ready for me. Waiting and wondering if anyone who was an organ donor, my blood type, and body size would die that month. Then feeling bad for pondering people dying but yet wishing I could get some new lungs soon as the cold Toronto wind gave me a coughing attack every time I stepped outside.

My lungs help up okay for most of 2014 as I hung out in Toronto and went to Blue Jays games and attended pottery classes at the Gardiner museum. However, in November 2014, after many hospitalizations and being on almost every antibiotic known to science, they were done. I got a blood clot in my right lung and struggled to walk to the bathroom. I was hospitalized and was told that if I didn't get my transplant within that week, I would be put on a ventilator as my lungs were barely holding on. On November 26, I got a set of beautiful new lungs.

As a result of the transplant and subsequent incision infection, I spent my 28th birthday recovering from a sternum removal surgery. My parents, living in NB but visiting as often as their jobs would allow, sent me balloons. The hospital gave me a catheter for my birthday as the anesthetic from the surgery made it so my bladder refused to pee. Isaiah snuck cheesecake into the hospital for me.

I slowly recovered and made it back home to the Maritimes. I spent the rest of the year getting stronger until I started getting dizzy when I exercised. After many tests, I was diagnosed with post-transplant lymphoproliferative disorder (a type of non-Hodgkin lymphoma) in November 2015 and as a result, spent most of that winter in and out of the hospital. My 29th birthday was spent in the hospital with a shaved head and a fever after receiving my second dose of chemotherapy. Isaiah once again snuck cheesecake into the hospital. I spent the day sleeping and taking as much Tylenol as the nurses would allow.

And now, after a lung transplant, serious complications, and cancer, I've finally reached my golden birthday (or champagne birthday, as apparently some people call it). Turning 30 on the 30th. I couldn't be more thrilled and relieved. I seriously doubted many times that I would be alive at this point. I had my funeral planned.

Reaching 30 for me means survival. I made it. I survived. When I was born, the life expectancy of someone with CF was 40. Statistically, I should get another ten years. But seeing how hard the last 10 were, I'm not particularly confident I have another ten in my future. Only 50% of people post-transplant live for ten years. And only 50% of people who get PTLD are alive after five years. So the odds are not in my favour.

But that's okay, I'm taking life one day at time and getting everything I can out of it. I may have had some hard years getting to this point but have also had some amazing moments. I've been fortunate enough to have lived in Ireland for a summer, get two university degrees, travel all around Europe. I cycled across Canada and I have the most amazing friends and family who support me unconditionally.

I don't know what to expect after 30. I'm feeling healthier than I have in years but my life is not on the same track as what I imagined when I was 20. I'm not sure how long this healthy period will last so I'm going to enjoy it while it's here.

I don't know how many years I have left. I could die so easily from pneumonia, or transplant rejection, or the cancer could return. But it's not like any of us have a written guarantee of a long and healthy life.

So today on my birthday I'm going to celebrate and party and eat cheesecake because I'm so damn happy to be alive. I'll probably also be a bit of an emotional mess and may spend the day bawling over how lucky I am. And I hope everyone hitting a milestone birthday this upcoming year can celebrate with me. Embrace life. All of it. The struggle, the fun, and the boring parts. It doesn't matter what you've been through, turning older is a gift every time.

Wednesday, 28 December 2016

Home!

I got home from the hospital last night! After they got my electrolyte levels back to normal, they still wanted me to stay to make sure my antirejection levels were ok. That meant I sat around all day so the nurse could take my blood at 3pm. I kept hearing the nurses at the desk asking things like "Is Watson still here?" and "Why is Watson still here?" as I sat in their private ICU room not connected to any monitors. It was frustrating to have to wait but important to know if my levels were ok (they were). The nurses offered me the extra molasses to take home. I said no. Someone else can keep those memories.

Now that I'm home, I'm pretty wiped. Being in the hospital is exhausting and my body is trying to recover from not eating for over a week. Probably all the trauma from all the enemas, IVs, and losing 20lb of poo in one night has also made me tired. 

I don't have much else to say but just wanted to let everyone know that I'm home and recovering. I don't have much of an appetite for all the Christmas cookies and peanut butter balls I made earlier this month but I'm sure it'll come back soon. For now I'll just keep drinking tea and munching on crackers. 
What a fun place to be for the holidays.
Replacing all my electrolytes.
My arms are completely tapped out. They gave up trying to put an IV in the last day after the medic from emerg failed several times.

Monday, 26 December 2016

A Christmas Poop story (not to be read while eating)

Merry Christmas Everyone! I hope everyone is having a wonderful holiday with friends and food.

So I had a unexpected twist to my Christmas where I learned the true meaning of having a bowel blockage.

Last week I started having some indigestion but didn't really think much of it because I've been having more indigestion lately and it usually resolves itself in a day or two. I was still passing gas and a bit of stuff so figured it would clear up on its own. But then I wasn't able to really eat anything because I felt bloated so by Wednesday when nothing had cleared, I contacted my Halifax CF doctor who I had clinic with that afternoon to consult what to do.

After clinic and doing a x-ray of my stomach, she sent me home with two 4L jugs of peglyte and told me if after I drank those nothing improved, to go to my local hospital for an enema. I drank peglyte last year when I was prepping for a colonoscopy (that never ended up happening) so I figured it would go down about the same as then. Terrible but manageable.

When I got home that night, I drank two glasses pretty quickly and then hit a wall at the third. Every time I tried to drink more, I either spit it out or threw it up. So off I went to Springhill emerg to see if they could help me and they sent me on to Amherst.

The Amherst doctor immediately wanted an IV put in as I was dehydrated but after the nurses failed three times, they thought maybe it wasn't that important. However, after they did the enema and I started to feel faint and told them "I think I'm going to pass out," they got one in pretty quick. After some hydration I felt a bit better (at least like I wasn't going to faint anymore). I stayed in Amherst emerg that night and had another enema, but nothing seemed to help.

The Amherst team decided I was more complicated than they were ready to handle and that I should be shipped to Halifax. However, it was important to get a NG tube (nose tube) in to start suctioning stuff from my stomach. Having the NG tube inserted was one of the most traumatizing experiences of my life.

I had them in Toronto but they were inserted when I was either completely out or half-sedated. The nurse gave me a Ativan but I'm not sure it helped that much. She sprayed my throat with some freezing and I immediately began to throw up, before the tube was anywhere near my face.

I puked up a bit and it was brownish and I thought "that's weird, I haven't eaten anything brown lately" and then it switched to "oh god no, that's not what I think it is, is it? It can't be." And then I proceeded to internally scream "NOOOOOOOO this isn't happening" while I vomited for about 5 minutes.

The nurse calm explained afterward that if "there is blockage, the poop has to go somewhere."  So basically my stomach was full of bits of poop and it came out when she put in the NG tube. If that makes you want to throw up, it should. I'm so traumatized that everyone else should be too and I'm not even sure if that accurately describes the horror. It was so gross that it made me keep puking long after the initial reaction.

The nurse looked like she might throw up too but instead she shoved in NG tube up my nose and made me swallow it down into my stomach. Eventually things settled down and I got an ambulance ride to Halifax late Thursday night. I got a room in the IMCU (like a step-down ICU) and have been hanging out here ever since. I spent Thursday night, Friday, and Saturday getting enemas and having peglyte pumped into my stomach and then suctioned back out. I've also been stabbed so many times as the nurses try to get IVs into my poor veins.

Christmas, yesterday, the nurses decided that they were done trying the traditional enemas and switched to the old-school "a nurse on another floor swears by this" milk and molasses mixture. The hospital doesn't carry molasses so the charge nurse had to drive to the Needs convenience store, which happened to be open, for molasses and whole milk (apparently the hospital's 2% wouldn't do). They were all so excited and hopeful that it would work.

After two milk and molasses enemas, it was about three hours later when the nurse said she was going to get the stuff ready for a third one when I felt a promising movement in my stomach. I used the commode and it seemed like maybe, finally, things were starting to move. Twenty minutes later, things were definitely moving everywhere. I'm not 100% sure it was the molasses and think maybe it was just the passage of time or all the peglyte in my stomach but I spent the rest of Christmas Day and all last night on and off the toilet. (The nurses all swear it was the molasses)

It was Poopmas for me!

Not exactly the Christmas I had been planning. I'm still in IMCU for (hopefully) one more day while they top up all my electrolytes and make sure I can keep liquid down without throwing up. I was hoping to go home today but I guess they would rather be safe than have me pass out in their parking lot.

Through all this, Isaiah has been in Halifax with me staying at his Aunts place. The rest of my family stopped by for a visit yesterday on their way to the Valley and then again today on their way back home. We are now going to wait and do a Christmas when Mom and Dad are back from Montreal sometime early January. It'll be like Christmas never ends this year!

I hope your Christmas and Boxing Day were much less exciting! 

Friday, 16 December 2016

Lung improvement!

I had to venture outside in the -25 weather this morning for my lung function test in Amherst. As much as I hated to go, I liked the results. My lung function is up again! Hurray!! I like this new trend of increasing every month. I hope it never stops. My numbers at home are not consistent and not improving so it's really nice to check in every month on a better machine and get a happy surprise.

I don't know why the numbers are still improving. I suspect it may be all the jogging I've been doing (the rest of my body is not pleased with the news it'll have to keep jogging) because that's the only real thing that has changed. Or maybe it's just now that I don't have cancer and my lungs have healed, they're getting stronger. Either way, it's happy news.

Stay warm, everyone!

Tuesday, 13 December 2016

Book pitch

Yesterday I mailed out a pitch for my transplant story to a publisher! Eek!!

It was so stressful to write the cover letter and summary of the book. Thankfully Google was pretty helpful in advice on what to put on the pitch cover letter as I had no idea what I was doing. It's probably one of those things that they go over in writing seminars and other classes that I should be attending.

I feel like a real writer sending out manuscripts for people to read. Now to wait for six months to hear anything back.

I have it all written and am going through edits for what feels like the millionth time. And then I have to start cutting it down to be more in the word length of what publishers want.

If I don't hear anything from a few publishing places, I will self-publish it like Wanderlust. I just wanted to go this route first and see what happens. Fingers crossed!

Monday, 12 December 2016

Christmas Tree

We got our Christmas tree! We actually got it yesterday after returning from a weekend in Halifax before it started to storm. A bit different from the fake bamboo tree we had in our Toronto apartment. And much less work for Isaiah when he got the tree by himself last year when I was in the hospital.

This morning I made some star garland for the tree working on the 'make stuff from old books' theme that I seem to have this Christmas. Well, last night I painted the pages in red and yellows and this morning I cut out the little stars and taped them onto thread.

We put on our one Christmas album (Bonnie M Christmas) and decorated the tree. I think the garland turned out quite well and matches our ornaments as much as that's even possible.

My mess last night.
Close up of the garland once done.
The tree in all its glory!

Monday, 5 December 2016

Bronch results

I got a call from my transplant coordinator this morning. Except the calls are rarely actual phone calls. I may have mentioned this before but the communication post-transplant with the team is done through a messaging system called Easy Call.

The coordinator (or admin if it's a general message or appointment reminder) leaves a message on the system which calls every hour until you retrieve the message. Then you leave a message in response, and they'll leave a message in response to that message. So rarely do I ever actually talking to someone. It's just a series of messages where sometimes information gets confused.

Anyway, I saw that I missed a call so nervously responded. It's rare for me to get messages from my coordinator anymore so any unsolicited message makes me edgy. The system takes about a few minutes to get through with all the recorded "if you have a easy call number, press the pound sign" "If you are Allison Watson, enter your password." It goes on and on.

The entire time my heart was pounding and I was thinking "no rejection, no rejection, no rejection."  There were two messages for me. The first one being a general message about hospital cards that I had to sit through while anxiously waiting for the real one from my coordinator.

Then finally the real message and....no rejection showed in my bronch!! Woohoo!!

However, the bronchial wash (where they pump saline into the lungs and then suck it back up to culture it in a lab and see what's growing ) showed the pseudomonas that came with my lungs is flaring up again so the doctors want to treat it. I'm not sure why as I'm feeling great but they've been doing this a lot longer than me so I'll shut up and take the antibiotics. I don't think the bacteria is ever going to completely go away but I guess it doesn't hurt to try and suppress these flare-ups before they get out of control.

But who cares about that, there's no rejection!!

Friday, 2 December 2016

2 year assessment

We're back from Toronto! After getting home at 7pm on Wednesday and working all day yesterday, I'm having a lazy day of card writing and relaxing.

Our visit to Toronto was good, we stayed at our regular B&B close to the hospital. It's so convenient and next to really good restaurants. 

Monday was my appointments day. Starting with bloodwork at 7am, lung function tests at 8am, CT scan, x-ray, and 6 min walk test all before 10am.


My lung function was the same as it's been in Amherst and my 6 minute walk test was about the same as 6 months ago. I was a bit annoyed by that. I thought I would have improved with all the jogging and exercising I've been doing. Not that I'm a speedy jogger or anything but I feel like I'm stronger and in better shape than 6 months ago. Why didn't that translate to being able to walk quickly?

So many laps up and down this hallway. Almost running into slow walkers.
After my walk test, we had a nice break for lunch before the clinic appointment. We walked around Kesington market and Chinatown and window shopped at all the stores.

The clinic appointment was quicker than expected, under 2 hours! The doctor didn't really have much to say except that my CT scan was better than 6 months ago which is excellent. And my cholesterol is still high so she prescribed medication since I'm clearly unable to control it through diet and exercise. High cholesterol is a side-effect of the anti-rejection medication so she said it's usually quite hard for patients to bring it down on their own. This means a few extra bloodwork tests when I first start the medication to make sure that my liver is doing okay (as it's hard on the liver) but no real other side-effects.

I talked to the doctor about all my concerns with the bronch the next day but seeing as she wasn't the one scheduled to do it, there wasn't much she could do about making sure I had more medication. She said a lot of stupid things like "have you tried relaxing techniques?" and "most people don't panic" but did send a email to the doctor on the next day to convey my concerns. Then we were out of there and had the whole night to relax and drink hot chocolate.

Soma hot chocolate! So good!
The bronch on Tuesday was actually ok! It wasn't until 1pm so I was quite starving and anxious all morning. It took the nurses 4 tries to get the IV into my terrible veins. Then to the freezing room to gargle the freezing juice and do the aerosol freezing mask.

Freezing the lungs.
Before I went in to the actual procedure room, I mildly freaked out (meaning I started crying) to the doctor needed me to sign the consent and she was very good with my freaking out. She said I was basically at the highest dose possible without having an anesthesiologist or stopping my breathing. But since my concern was that I wake up toward the end of the procedure and don't get put back under and panic, she agreed that she would space out the medication more and re-dose me when I woke up. 

The sedation medication for a bronch are funny because they don't make me drowsy before I get knocked out. I feel wide awake one second and am out the next. There's no gradual relaxing feeling like there was when I had my wisdom teeth out or when they did my sternum surgery.

I woke up in a panic but they were thankfully all done. It still took me a few minutes to calm down before I went to the recovery room but overall, it was much better than before. After the 'make sure there is no air outside of your lungs' x-ray, and a chat from the doctor, I was good to go. The doctor said afterward that while it went okay, she would recommend that I be put completely under with a anesthesiologist next time I need a bronch. Fine by me.

So that was my last bronch for awhile! No more until I get rejection or something else goes terribly wrong. I don't have the results yet but hopefully will find out if they find any infections or rejection within the week.

I had a solid two hour nap after the bronch and by the time I woke up at 6pm, I was starving after not eating all day. We never made it to the Christmas market as I was feeling spacey while walking around the block on a quest for extra food (I ate all the Chinese leftovers from Monday night but was still hungry, I found a tacos). I didn't think it would be that much fun to go to the market only to space out and be tired.
Goodbye, Toronto!
Wednesday, we walked to the airport where I drank the free cappuccinos to mend my throat from the bronch while we waited for our delayed flight. Then arrived home to a foot of snow and a freezing house. Welcome back to Nova Scotia!

Saturday, 26 November 2016

Two year lungiversary!

It's my two year lungiversary! Woohoo!!!

This seems more exciting than my one year as it's not being spent in a hospital. I'm feeling fantastic.  I jogged for 20 consecutive minutes this morning which felt like a huge accomplishment. Being able to sweat due to exercise still feels amazing. I'm not sure if that makes sense to most people but when the lungs are what stops you from exercising, it makes it hard to push the body as much as you would like. Now, while I still sound like I'm wheezing and about to pass out when I jog, I can keep going until my legs give out. It's wonderful.

I'm so thankful for my donor and the medical system. Thankful for the CF Foundation for funding research. For all the researchers and scientific breakthroughs over the last 40 years that make organ donation possible. The science and medication that allow transplants to be possible is mindblowing.

It's been a hard two years medically and I'm thankful for everyone who has helped me during those times. Who have given Isaiah and I placed to stay in Halifax. Who visited me in the hospital during chemo and my fever weeks. Who has sent me supportive messages. I don't know how I would've gotten through the past two years without all of you.

Now it's time to party!


Wednesday, 23 November 2016

It's okay to not make lemonade.

I just need to post a reminder to myself and anyone who might need it after reading way too many uplifting posts about 'learning life lessons' after transplant from the facebook group.

It's okay to not 'learn' anything from your hard times. I don't mean that to be a Scrooge but having an illness or cancer or losing someone doesn't have to make you a better person. You don't have to come out 'stronger' on the other side. Surviving it is enough. Putting one foot in front of the other and getting through every day is enough. You don't now have to be a 'better person'. You don't have to dance in the rain. You don't have to make lemonade. And you sure as hell don't have to be thankful for the experience.

And I don't want to bash on the people who do feel that their rough time or serious illness has made them a better person or changed them in someway. Of course it always changes you in some way. Any life experience does that. 

I just wanted to remind people that it's also okay if it isn't as life changing as all the motivational posters make it seem. You don't have to now save the world because you survived. You don't have make it look like it was easy. Sometimes lemons stay lemons. And that's okay.

Medical week ahead

It's the start of my week of medical appointments. Technically it's only three days of actual appointment but taking place over the next week.

Tomorrow I meet with the hematologist for my quarterly appointment. I'm not sure what she'll tell me as I haven't had any scans. I did have blood work drawn yesterday but I'm not sure it'll show anything even if my cancer is back, unless my hemoglobin is low and then that should be a giant red flag for them. But I'm sure if that was the case, I would've noticed while exercising. So unless everything is running really behind, the appointment shouldn't take very long.

After the hematology appointment, we have a few days in Halifax and have plans to celebrate my actual two year lungiversary. Woohoo! Basically just hanging out with some friends and playing games but I'm looking forward to it. I heard there will be cake!

Sunday we fly to Toronto for my official two year check up. Monday is full of the regular appointments and scans. Tuesday is (what I hope will be) my last bronch for a long time. After two years the doctors only do bronchoscopies on a 'as needed' basis so until I show signs of rejection, no more bronchs!

I'm going to do everything in my power to be super medicated during this bronch. I'm almost positive that I'll cry during my doctor appointment on Monday when I beg them to drug me up as I am almost panicking just thinking about it. I'm really not sure how else to express my anxiety other than to keep telling them about it.

I'm really hoping the last doctor charted about how terrible it was so maybe they'll be a note somewhere saying to up my dosage. My lung function has improved which should mean that they can give me more sedation without fear of killing me. Most people can get through bronchs conscious and aware of what's happening without having full out panic attacks and I really wish I could be those people. I just start panicking if I wake up and can't stop. It's terrible.

After I sleep of the sedation on Tuesday, I'm hoping to have enough energy to go to the Distillery District and getting some of their delicious hot chocolate from the chocolate factory. I know it's 5$ a cup but it's sooo good.

After all that, we'll fly home Wednesday.

I really need to start packing and stop reading my book. 

Sunday, 20 November 2016

Hair!

As the doctor warned me about, my hair is growing in pretty curly. He said that is common for the first year and then it'll calm down a bit. My hair was always a bit wavy but now it's gone almost to curls. I also can't tell if it's darker than it use to be or if it just looks that way as I had highlights before. I have a lot of grey hairs are poking through but I'm just going to leave everything in it's natural colour for awhile as I was told not to dye it for the first year for fear of damaging the new growth. And grey highlights are trendy now, right?

I'm super relieved my hair has totally come back as some women end up with patches or really thin hair. But it is growing very slow. Although maybe it's just the extra curl that makes it look shorter than it really is. It does really spike up when my hair is wet. But I'm just happy to have hair again, it can grow as slow as it wants.

Now that my hair is back, I feel like I can get rid of my wigs. If anyone knows of someone who needs some wigs, send me a message and I'll pass them along. In the meantime, I finally got around to washing them and have them put away. Nice to have space on my makeup table again! 


Friday, 18 November 2016

Pft's remain up!

My lung function jump from last month wasn't a fluke! Hurray! I had them tested again this week in Amherst and they remained at 71%! It took eight tries to get the same number three times so it was a bit more of a struggle than last month but I got there in the end. I also had the technician who does things a bit more by the book, so that may have also been why it took 8 times.

I thought that I might have dropped a bit due to my headcold that lingers on and on but it was clearly not an issue. Since there is no drop in lung function, the doctor doesn't think it's necessary for me to take anything for this cold. Not that antibiotics will do anything for a runny nose but I still need to be careful it doesn't move into my lungs.

I had been happy with my plateau in the 60% range but now that the numbers have jumped I want to know what I did so I can make it go up again. I need to be happy with 71% but having it increase after so long makes me hope it'll keep increasing. Maybe as I keep increasing my jogging time (I'm doing that very slowly), it'll help my lungs. Or maybe I'll just learn to be happy with it being stable. 

Monday, 14 November 2016

Lung party!

Over the weekend my family had a 2 year lungiversary party for me. We made pasta, ate seafood, played some silly lung themed games, and painted. It was really fun to get together and celebrate life. It's also pretty hard to be down when the theme of the party is "being happy to be alive." Even Isaiah got into the painting even if he still isn't over his cold.

My real two year mark isn't for another 12 days but it was the only real time we could get together before I go to Toronto for my 2 year assessment. It'll be a constant party until then!

Mom's fun decorations
Making pasta is a four person job.
An accurate description of chemo.
Delicious cake! Mom went all out with the lung theme.
Our paintings!

Saturday, 12 November 2016

I guess I'm now a cancer survivor.

I've been thinking a lot lately about the term 'cancer survivor' which I guess is a club I've now joined.

A lot of cancer groups consider anyone who is living with cancer, has had cancer, or is in the terminal stages of cancer (this one confuses me), to be a cancer survivor.

Some people don't consider anyone to be a survivor until after a year in remission. Some people start using the term as soon as they are diagnosed. The cancer society says that anyone who has been affected by someone with cancer can consider themselves a cancer survivor because they 'went through' the disease as well. 

So...congrats for being a cancer survivor? Although I really don't see it going over well though if Isaiah started referring to himself as a cancer survivor. I've read that spouses of people with cancer have a higher risk of depression and anxiety for the first few years after treatment so it's not like they are totally unaffected. He took care of me when I couldn't get out of bed, got me to the hospital when the chills made it so I could barely move, and made me the same bland rice and chicken meal for weeks on end. It's just having a giant needle stabbed into your spine, getting feverish chills, and having your bones ache isn't quite the same. Get your own word, Isaiah!

There is also the term 'previvor' which is used to describe people who have a genetic mutation which makes them susceptible to cancer, like the BRCA mutation. Some people feel the label 'previvor' takes away from women who have had breast cancer. But others find it helpful to explain the stress and panic of being susceptible to a deadly disease. I've never heard anyone use that term in real life so maybe it's just one of those things a committee came up with and everyone else rolls their eyes.

Of course, with the pushback to 'previvor', there is also pushback against 'survivor' with some people calling themselves instead 'thrivers' or 'alivers' as they've now decided to thrive in life? I don't really get it.

I didn't think of myself as a 'survivor' during cancer treatment and I guess I consider myself one now even though I'm not a fan of the term. Not that I think 'thriver' or 'aliver' is much better. I don't like the militaristic terms. I've never liked the whole 'winning' and 'losing' part of the medical language. It's like you're a survivor until you're dead and then you're a loser? "Here lies Allison, a cancer loser." Although it's not like cancer is winning much after you die as the cancer cells die too, it's more technically a stalemate. "Here lies Allison, it was a cancer stalemate."

Although I'm not big on 'survivor', there isn't really a good replacement term and I understand why people like using the word. Cancer is terrible. Chemotherapy is the worst. From what I hear, radiation is no walk in the park. Going through that and coming out the other side is something to relish, it's a big thing in most people's lives and the whole process does feel like surviving something very intense. I think the term survivor can also help people put that part of their lives behind them.

But I must say having the cancer gone from the body doesn't mean that there aren't lingering effects. Not just physically where it takes a long time to recover from what the chemotherapy medication does to the body but also the psychological part of it. The continued anxiety of "what if/when will it come back?" is very really. Apparently 9 out of 10 people who are in cancer remission are worried about a relapse. And may I just ask, "who is this 10th person?! It's called remission for a reason, the literal definition is 'a temporary recovery.' How can you be so chill?!"

I think the reason I find a lot of these labels ridiculous because, having CF, you never get to be a survivor. Maybe I'm just bitter against those who get to be free of their disease. Or maybe I just resent every time anyone called me a 'CF survivor' and I thought about all the ways I would never be free of having CF. As there is no cure, you are always in the losing category. You try to stay as healthy as possible until you die from lung failure, or get a transplant and start the whole cycle over until you die of a lung infection or organ rejection. I know it sounds fatalistic but it's what happens.

I've seen some 'CF warrior' around which, I guess, makes sense. More sense than 'CF survivor' but it's still in the military realm. Must everything be an exhausting battle? I wonder if diabetes has anything. Diabetes champion? Diabetes knight?
Think of all the things to put on a business card, Allison Watson: CF warrior, transplant recipient, cancer survivor, diabetes manager, and part time library clerk. I'll need a big card.

Wednesday, 9 November 2016

stupid cold

Urgh someone (I keep blaming Amy but she swears it's not her) gave me a cold and I feel miserable. I was worried about this when I started working again so I hope it's just a one time thing and not the start of someone. I thought I had been paranoid about washing my hands frequently but I guess I'll need to step it up.

I've spent the last three days laying low and drinking a lot of tea. I'm feeling a bit better and have stopped blowing my nose every 5 minutes but am not close to being100%. The doctors haven't given me anything for it yet as they wanted to see if the infection would blow over in a few days. I had bloodwork done on Monday so I think that will show if anything is seriously amiss. My guess is that it's probably nothing serious but it'll linger for much longer than I would like as I don't seem to get over any sort of infection very quickly. Having a low immune system isn't conducive to quick healing.

I have passed on the bug to Isaiah so our house is basically a pile of used tissues and tea mugs right now. Visitors welcome! Ha ha.

On the plus side, I have my first 'real' day at work tomorrow! I'll be carting up a box of kleenx and extra hand sanitizer 

Monday, 7 November 2016

Cooking: Tiramisu

I forgot to share this delicious tiramisu I made. Mascarpone cheese was on sale at the grocery store so I had to buy it to make tiramisu. I made the ladyfingers from scratch which was easier than I had anticipated. And more delicious. I never realized how yummy ladyfingers are on their own. Probably due to all the sugar.

I put together the tiramisu the next day before we ate all the lady fingers. It was so good and didn't last very long.

I used a standard ladyfingers recipe and then Julia Child's Tiramisu recipe.

Ladyfingers:

1/2 c sugar
3 egg yolks
1t vanilla
- beat sugar into yolks, add vanilla, continue beating until thick and yellow.

3 egg whites
pinch salt
1T sugar
- beat whites and salt until soft peaks are formed, sprinkle on sugar and beat until stiff peaks.

1/2 c flour
- scoop 1/4 egg whites with yolks with 1/4 of the flour. Fold in. Add 1/3 of the flour and whites, repeat. Don't overmix!
Pipe into 4", 1 1/2" wide, 1" apart, sprinkle with icing sugar, bake for 20 min @ 300F. 


I'm not very even at pipping.

I started eating them all with jam as a little jam sandwich. So good. 

Tiramisu

1 16 oz mascarpone cheese
1/2 t salt
1/2 c + 2T icing sugar
3T + 1/3 c espresso (I probably used more than this)
1 1/2 t vanilla
3 1oz squares of semi-sweet chocolate, grated
1 1/2 c heavy whipping cream
2 t instant espresso coffee (I just used regular espresso)
2 3-4 oz packages of ladyfingers (or around 18 homemade ones)

- beat mascarpone, salt, 1/2 c sugar, 3T espresso, 1t vanilla, 2/3 chocolate
- beat 1c cream and fold into cheese mix.
- in a sepreate bowl, mix instant coffee, 1/3 c espresso, 1/2 t vanilla
- line dish with 1/4 ladyfingers, drizzle 2T espresso mix over (or...I dip the ladyfingers into the espresso before putting into the dish. It uses more espresso but it's so much better). Spoon 1/3 cheese over.
- layer more espresso ladyfingers, and cheese until done.
- sprinkle remaining chocolate on top.
-beat remaining 1/2c cream + 2 T sugar (and I added whatever espresso I had left) and pipe on top in pretty designs or blobs.
-Refrigerate for at least 2 hours before serving.


Cheese mix.
Ladyfingers being stacked.
Ta-da!
Sooo good! Worth all the effort!

Sunday, 6 November 2016

Weekly round up

Well, my 'one day a week' job at the library has somehow turned into three days for the past two weeks. I guess they wanted to make sure I was fully trained but it means it's been a super busy week.

My bone density scan on Tuesday was done in under 10 minutes. I'm really glad we drove up a few days early because it would have been annoying to drive 4 hours in one day for a 10 minute scan. I always find the questionnaire before the scan to be hilarious because it's clearly meant for an older population. I guess it's not as common to have younger people with frail bones.

Case in point:
Ummm, no I haven't broken any bones since the age of 40...
The other thing I did this week, besides work, was sell cards and mittens at the Springhill craft fair. And....I sold zero cards. Zero. However, Mom had made a bunch of the wool sweater mittens and people seemed to love those. So I guess it wasn't a total waste of time. But Christmas cards were not a thing people want. Maybe people in Springhill don't send cards? Or maybe people prefer Hallmark? I don't know. Maybe I was just at the wrong market. I didn't think I would sell them all but I thought I would at least sell a few. A failed experiment. I guess now I have cards made for the next few Christmases.
My table!

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.

Tuesday, 27 September 2016

Forgetting digestive enzymes

I made a delicious chili for supper Saturday night, nothing fancy but it turned out really well. So then we ate it again for supper Sunday night. And I remember a few bites in, wondering if I took my digestive enzymes. I remembered drinking some water so I felt I must've taken the enzymes because why else would I drink water before eating.

Now I'm not so sure as that night the chili had its revenge.

I had the worst cramps all night. It was exhausting. Sometimes these things happen even when I take all my pills so I'm not even positive that I forgot them. Perhaps it was just the beans seeking revenge.

It was a terrible night. I barely slept and was drained yesterday as a result. Isaiah brought me some yogurt to eat for breakfast in bed before I slept for the entire morning. Stupid chili.

Taking enzymes before I eat anything is such a routine that it's always hard to remember if I've taken them. It's such a refex that I'm usually sure I've taken them but sometimes I stare at the bottle willing myself to remember the last 5 minutes. It's weird how easy it is to forget.

It's gotten worse for me over the past year as I now have to take insulin before every meal. Because it's so ingrained for me to do something before a meal, I find I'll inject myself and start eating without taking my pills. Because my body has done it's "before meal" activity. It's not yet use to routinely doing two things before every meal. I usually catch myself but then I have cases like Sunday night. And with such a bean-and-protein-heavy meal, I feel the effects.

My poor digestive tract. It's still not completely happy with me.

Thursday, 22 September 2016

Working?

My CF clinic appointment yesterday was fairly standard, quite boring as I always hope the appointments will be. The only change was that they didn't check my pfts as I had them done last week at the Amherst lab and I guess they figured that was enough. That was a nice change as I hate their handheld machine.

The doctor does want me to re-start the prophylactic antibiotic three time a week and see if my white count can stay stable this time. She is hoping that it crashed out last time because the chemotherapy drugs were still in my system and that I'll be find now. The drug that they use as an option B if people have a reaction to the first option has many more side effects so they really want me to be okay with option A.

The doctor also said that it was okay for me to start working again! As long as it's in a job with no people, germs, strong chemicals, or dirt with not too many hours to tire myself out. So...as long as I can get some sort of 'work at home' gig or "in a small office". I don't see there being very many/any recreation therapy jobs working from home so I'm not sure what I'm going to do.

First off, I have to figure out if I want to return to work. I mean, financially it would be nice but I'm also very worried about starting a job and then getting sick, or having the cancer come back, or just not having any energy to do the things I enjoy. There is no point in living post-transplant and spending all my energy at some terrible job while increasing my risk of infection.

So while it would be nice as something new to do (not that I'm sitting around bored at home), I also don't know if it's worth the risk. The CF nurse said that only one of their post-transplant people returned to work as everyone else didn't want to spend their 'extra time' working, which is fair.

I also don't even have a job to return to so it's really not a rush. I think now that I've been given the okay (with a lot of stipulations), if something comes up that I think would be interesting, I'll apply. But I'm not going to stress over finding work ASAP. Not that there is even work to be found. All the things I've thought I could maybe do, aren't exactly looking for under-qualified people, like writing. Or answering phones. Or becoming a baker.

Perhaps I can buy a pottery kiln and become a potter. I'm sure that wouldn't make a giant mess in the living room, right? 

Monday, 19 September 2016

I had my pfts done on Friday and they are about the same as two months ago! Woohoo! Holding steady at around 62%. I had the super speedy technician so I was done in about 5 minutes. He always combines a few of the tests so it goes faster but its more tiring at the end as there are fewer breaks. Then he usually comments on how fast my appointments are. Ah well, as long as the numbers are good.

I hadn't had my levels checked in the lab for two months as August got screwed up with my going away, but then not going away so it was nice to confirm that they hadn't changed. Nothing had changed with my machine at home so I wasn't worried but it's still nice to check. I was hoping they would be up a bit after all my hiking this summer but no such luck. At least they're holding steady.

While I was at the hospital, I tracked down the HR person who told me that I had been officially let go from my employment with the Cumberland County Health Care system. My actual job had been let go a year ago but they are suppose to keep me on as an employee for awhile. So that sucks but isn't too surprising. That means that if the doctors say on Wednesday it's okay to return to work, I'll have to brush up my resume.

I'm still trying to figure out where I would be comfortable working again. I don't really want to work with the germy public but am not sure what else to do. Most places don't hire for only a few hours a week so I'll also have to figure out how many hours I think I could do starting out. I don't think jumping into full time would be realistic.

Then the problem is also to try to find jobs available. Seeing as Isaiah has been applying for retail jobs while he does his course and has gotten zero interviews, it may be harder to 'return to work' than getting the doctors to say it's okay.

Thursday, 15 September 2016

Cooking: Ground Cherry Ginger Jam

I made ground cherry jam today with the massive amounts of ground cherries I currently have. I've never had such an overwhelming amount of them before. The two plants at the garden are massive and this week have decided to drop all the fruit.

Ground cherries look like this:

 
And taste something between a tomato and pineapple. I find them quite delicious after a meal but Isaiah doesn't like them very much so I can't really keep up with what we've been getting this year. Last year I made a small ground cherry and blueberry pie that was okay but this year I figured jam might be the way to go.

Ground cherries have an amazing amount of pectin in them so after looking at a bunch of recipes online, this is what I came up with, making two half-pint mason jars: 

1lb ground cherries (husks removed, obviously)
1 3/4 cups sugar 
juice of 2 lemons
1 Tbsp grated ginger
1 star anise

I boiled the ground cherries, sugar, and lemon juice for about 30 min until they had all exploded and pretty much boiled down (at a point it all looks like weird ground cherry skins but then they dissolve in the syrup)


Then added in the ginger and star anise for the last 10 min of boiling.

Removed the star anise before bottling.

It set after being bottled. Don't worry about how runny it is, it will set.

Yum!

Tuesday, 13 September 2016

Working again?

Next week I have an appointment with the CF clinic. It's my first appointment with them since my clean bill of health from the hematologist.

I have a few things to talk to them about since my appointment with Toronto, mainly about starting a prophylactic antibiotic as the one that most post-transplant people are on keeps crashing out my white count. The Toronto team didn't seem too concerned about it but it was something they brought up that needed to be dealt with.

The big question for me, is if the team feels that I'm okay to go back to work. Most people with CF return to work after a year post-transplant and it's almost been two for me. However, most people don't also get cancer. My guess is that they'll ask me if I'm ready to return to work. And I think I am...? Not full time, but maybe something on a part-time basis. I feel like my energy has returned but the energy level required to be around the house is different than the one required working. I mean, I still sleep a solid 10 hours every night which I feel may not be possible if I had to get to a job by 8am.

I'm also a bit terrified that I'm going to return to work and something terrible will happen. I'll catch a cold or pneumonia and have to then leave. The risk doesn't exactly seem worth it. But at the same time, I would like a change from my day to day routine. Even though once I start working again, I'll probably soon want a change from that day to day routine. I must say, it has been nice to be able to go on hikes or little vacations whenever I want.

I mean, I don't even have a job to return to. The last time I talked to anyone from the hospital they didn't know if I was even still in the system or if I had been permanetly let go. Technically they were suppose to hold my spot with the hospital, just not my actual position. So I may be able to return to a job somewhere in the hospital system. But maybe not because no one seems to know.

And I'm not positive I want to return to a hospital job working with inpatients. It just seems so germy. The Springhill hospital was really good but it's not like there are job openings for things I'm qualified for everywhere (or anywhere).  There are probably jobs available with nursing homes but then it's the same germ issue. I guess that's the problem with recreational therapy. It's a 'working with the public' profession so it'll be hard to find a job not working with the public.

A research job would be ideal. Because I'm sure there are plenty of those waiting with my name on them.

Anyway, I just have to wait and see what the doctor says. I've had one good scan and everything seems to be pretty stable lung-wise so I don't see it being an issue.


Friday, 9 September 2016

Last week, a woman with CF who had a double lung transplant during the time I was in Toronto died. I didn't know her personally but I am still saddened by her passing and can't seem to stop thinking about it. She had her transplant a few months before me and I watched her from a far (as she also had CF so we were never in the same section of the physio room together) while she waited and then returned to the physio room after her transplant.
 
Due to the public nature of Facebook with friends of friend's information showing up in the newsfeed, I learned that her lungs rejected around her first year transplantversary. However, she was a good candidate for a second transplant so was re-listed. She had her second transplant about a month ago and while it looked promising initially, the second set ended up not being viable.

She is the second person that I know of who had their lung transplant around the same time as me who has passed away. I know for a lot of people with CF, knowing people with CF who die is quite common. Especially for people in the bigger cities like Toronto where, for some reason, everyone seems to have a much tighter connection and knows everyone else. But it's relatively new for me.

Before the transplant process, I was never really in contact with anyone with CF. I know/knew a few people from the Moncton area as our families volunteer in the same CF chapter but that's about it. I'm not sure if it's because I always had Amy around to talk to whenever I was having a 'CF problem' or if I'm just purely anti-social, but I never felt the need to connect with other people solely on the basis that we both have the same disease.

But during the transplant process and now, I saw more people, both with and without CF, and got to know them, by actually connecting to them via the internet, or just being a stalker. And it is nice to be able to vent to people who know exactly what you're feeling. So now I'm starting to experience what many people with CF experience all the time, knowing many people who pass away from the same disease you have. It sucks. The older you get with CF, the more likely that everyone else you know with the disease will die.

It's sometimes easier to think it would be better to live in a little bubble and avoid getting to know people so you don't have to watch them die. But then that seems like an idiotic thing to do. Shunning people to avoid being sad isn't really the answer.

I didn't even know this person so part of me doesn't feel like I have a right to be sad. It's her family and friends who are truly affected. I'm just a bystander thinking selfishly about how someone elses death impacts me. But because she died from transplant complications and had her transplant around the same time as me, it's a reminder how vulnerable I am. How rejection could be just around the corner. How one infection could cause lung failure.

Then I start to think of all the things I do that are on the borderline 'maybe allowed' list. Like gardening, being around dogs, eating soft cheese or sushi, or shaking people's hands. I know I need to live my life and not worry about the cloud of doom that can take over but it's also a reminder to take care of myself and not take any unnecessary risks.

It's also a stark reminder of how much of a gamble having lung transplant can be. Yes it can extend your life but there are no guarantees. While the science for transplants is amazing compared to years ago, so much more still  needs to be studied. Like improving the anti-rejection medication to keep people healthy post-transplant. And figuring out better ways to get more suitable matches. Even just having more organ donation would help as if there were more lungs available, there would be better matches which would decrease rejection so people could live much longer post-transplant.

Tuesday, 6 September 2016

Climbing Gros Morne.

The entire point of going to Newfoundland, besides looking for whales at every possibility, was to hike Gros Morne. Before my transplant, when I couldn't walk to the bus stop without getting short of breath or having a coughing fit, I said the one thing I wanted to do if I got new lungs was to hike Gros Morne. It was one of the only real concrete goals I had for myself. At the time, it was hard to imagine I would be able to walk more than a block comfortably, let alone hike up a mountain.

Gros Morne may seem a bit random as there are a lot of beautiful hikes around the Maritimes but it was one that I had been close to doing several times but had never been able. Twenty years ago, when we visited as a family, Mom and Dad weren't sure how hard the hike would be and figured that David and I were too young so we stayed behind with Mom and went to the Rocky Harbour pool while Amy and Dad did the trek.

Then, eight years ago when David and I cycled across Canada (that was 8 years ago!), I was much too exhausted when we visited during our drive back home to do anything more than a few short hikes in the park. So I stayed behind at camp with Isaiah while David, Mom, and Dad went up the mountain.

Finally, three years ago, when Amy and I visited The Rock, I got short of breath while doing the little Tablelands hike. When we visited, it happened to randomly be oppressively humid the few days we were at the Gros Morne park. So much so that I called it quits on our (very) short hike and we tried to cool off by sticking our feet in the little stream. Going up Gros Morne wasn't even considered during that trip.

The mountain has always eluded me and this summer I knew I was ready to tackle it. My family, never ones to be left behind for a vacation, planned the trip. Then re-planned everything when it turned out that I had my PET scan and doctor appointments during the original time we had decided on going and I couldn't get the scan changed and refused to cancel a scan testing for cancer (it was all negative, by the way).

That meant trying to camp in Newfoundland during the last week of August. We packed our tents but totally ended up wimping out when it called for a lot of rain and stayed in the new OTENTiks and rustic cabins in the park. It was like camping only much warmer at night.
Isaiah cooking outside the oTENTik. It's basically a canvas shelter with bunks.
The weather on the day of our hike couldn't have been better. It was cool and cloudy which was perfect for the steep climb. We got up super early and drove across the park to the mountain (we were at the campground the furthest away). There was a bit of morning fog on the top of the mountain (you aren't suppose to go up if you can't see the top) but it looked like it would burn off pretty quick.

Off we go!
I was super excited once we got to the trail and felt like I would fly right up. Amy, much to no ones surprise, came on the hike too. With her oxygen tank. Well, Mom carried the oxygen in the backpack with Amy attached. They had perfected the system when Amy joined us for the last half-day of the Fundy circuit. But it still wasn't the best when Mom leaped over puddles or went over boulders too quickly.
For those who haven't been to the Gros Morne mountain, it's a 16km hike. There is an inclined 4km hike to the bottom. Then it's roughly 1km up over loose rock. You gain about 400m elevation in 1 km. It's steep. After that, it's all a much more gradual downhill over the back of the mountain but still over some rock and through a wet, boggy, valley. The trail meets at the start of the climb and then there is the same 4km return to the parking lot.

Amy started the hike by saying that she would just walk into the base and, "see how she felt" before making a decision if she would do the entire thing. The 4 km, mostly incline, to the base was a struggle for her. It was early morning so there was a lot of coughing, throwing up, and many breaks. She kept going and pushed through what looked like a desire to curl into a ball on the side of the trail and have a nap.

Along the walk to the base.
Side note: For some reason, Amy and I's CF lungs hate/hated the morning. There is something about having to get up early that just makes everything worse for terrible lungs. There is more coughing, more exhaustion, and generally more unpleasantness. I'm not sure if it's because the lungs haven't had enough time to cough out all the gunk that has built up overnight or just a exhaustion from not sleeping as much but the mornings, for CF lungs, are usually quite terrible.

But Amy is the picture of determination and doing something on sheer will. We got to the base and the mountain had cleared but it was still cloudy, cool, and no humidity in sight. It was a perfect day for reaching the summit. Amy decided to keep going with us as, while her lungs weren't happy, they didn't have the jabbing pain that sometimes occurs. Although I'm not really sure what would've turned her back at that point.
The hike to the top is up the ravine in the middle.

We had a little snack and then threw ourselves up the rock face, but not before Mom shamed a group of four into continuing up the summit. I think her words were, "if my daughter can do it with oxygen, you should be able to." I really don't think Amy had much of a choice after that.

Amy pointing out that "death may occur" if you lose your group and wander off the mountain.
So maybe we didn't 'throw ourselves' up the mountain as much as 'walked slowly trying to pick the right path over the rocks'. We avoided obstacles like a small child throwing rocks down the mountain towards us and two hikers who were doing the loop in the opposite direction to literally every other person. We took lots of breaks and seemed to be passed by almost everyone but somehow (I think through determination and a competitive spirit), Amy, and the rest of us, made it to the top.

[I honestly think that sometimes the only reason that Amy and I are alive and able to do as much as we can, is because we both hate when one of us can do something the other person can't. It's the attitude of 'if she can do it, and has CF, then I better be able to do it too.' There is a bit of unspoken sibling rivalry that keeps both of us going even though it no longer really makes any sense. Even less than it did before.]

I can't really describe how I felt at the top. I was so thrilled and excited to have made it. It signified more than just a hike. We asked a guy to take our picture and he said "it's a struggle up, isn't it?" to which Mom mumbled, "more than you know." And that basically sums it up. I felt like I had finally bounced back from years of illness and from not being able to walk up stairs without coughing, to being able to summit mountains.


The accomplishment was more psychological than anything else. Sure, it wasn't a stroll in the park, but the hike itself wasn't overwhelmingly hard. No more exhausting than the two days of the Fundy Circuit. It's not like anything had changed during that week or I had suddenly gotten significantly stronger. What made me feel all the feels was that I was able to do something I never really thought I would have the chance to do again. I was conquering mountains that I had dreamed of before my transplant. 
Made it!
I'm still not exactly sure how Amy made through the hike. I'm not sure how many times I can say determination but I'll say it one more time. There is something about having a disability that makes it so sometimes, you have to see how far you can physically push yourself. You may pay for it the following week and vow to never hike again but that never lasts. Because having CF is a constant struggle to stay healthy before you lose what health you have, testing physical limits seems to be par for the course. It's an attitude of, "do what you can, when you can, because you never know if you'll ever be this healthy again." I'm sure not everyone feels that way but Amy and I seem to be set on pushing our limitations as much as possible.


I know it's been almost two years since my transplant but I still get the sense of awe when I can do things I had only dreamed about before the transplant. Now one of those dreams can be checked off my list. Although seeing as my list only had, "hike Gros Morne", I'm going to have to think of other, more tangible goals than my vague "travel everywhere" and "do all the things."