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!

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. 

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! 

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. 

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!

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.

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 

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!

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!