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.