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.

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? 

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.

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!

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.

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.

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."

Home!

We're back from Newfoundland on this very sunny, warm Labour Day weekend. I hope everyone had a great end of August! I guess this officially marks the end of another summer and now it's back to getting blood work and lung function testing done.

I had a wonderful two weeks vacation around Atlantic Canada, first in PEI for a week of sun and sand, then a quick weekend in Alma for a wedding, followed by a week in Newfoundland full of chilly hiking and whale watching. It was nice to come home to catch the end of the summer heat and pick some of the tomatoes in our little garden that the teens haven't yet smashed.

Now to wash the campfire smoke out of my clothes, air out the hiking boots, and get some groceries for our very empty fridge.

I also made it up Gros Morne! But more on that tomorrow....