2 year lung anniversary

Tomorrow is my 2 year lung-iversary. Read my post 3 days before transplant here. Read my 1 year lungiversary account here.

Can you believe it's been 2 years since they cut me open, scraped out my old disease lungs and put in these new healthy pink ones! Too much info? Did you forgot how I don't leave much to the imagination? It's been so long since I've updated this blog. You know that's a good sign! Nothing in my CF life needs updating. Don't think I could easily give up blogging though. Check out my Style Inspiration blog for updates here and there of adventures. Click here. 

This past long weekend, was the first weekend I spent OUT of the hospital in...YEARS. The last two were strapped up to IV medications, or chemotherapy, (last summer I had lymphoma). Two years ago tonight, who knew I would wake up ever so gently by the nurse to tell me "Hattie your new lungs are here..."

Man, that seems ages ago. My mind has slowly but surely started erasing a lot of those memories
As I'm typing this blog post out "What a fine life we are living" starts playing on my itunes. Isn't it funny how that happens?
Listen to the song here.

This past year has been the best year of my life. Who knew breathing could be so substantial in living? Ha. Who knew it took everything I had to live my life by doing medical routines...you never really know how bad it is when you're living it, until you experience how good life can be without all that medical stuff. I look back now and think...how did I do it? How do current CF patients do it? Everything CF patients have to deal with...no wonder people used to be in awe of everything me and my family went through...we went through hell, and you just never really know how bad it is, until your life suddenly becomes everything life should be. Freedom. Breath. Love. Strength. Euphoria.

Someone two years ago lost, probably the most wonderful person, I will ever know, because they were an organ donor. They saved my life. I did not know how I was going to make it to the following weekend. Coughing...oh god the coughing and hacking and breathlessness...I really did not know if I could go another week. My donor took my life from a little mud puddle, to being able to live on my own, to falling in love, to having a future. Thank you donor family. I'm so sorry your day is not as happy as mine is today.
Happy two year lung-iversary to me.
Thank you, thank you from the bottom of my heart, Donor family.
Today I worked out in 35 degree weather outside at a boot camp, I went swimming in my boyfriend's pool, I ate a healthy (non high fat diet) lunch. Donor you made that possible. You. Are. Amazing. I. Love. You. Rest in peace dear dear donor.

me in march putting my lungs to good use inWHISTLER BC. I got teary eyed at the top knowing this never would have been possible without my donor!

me and my manfriend, we did a lot of hiking! I swear I didn't stay up there the entire time, I put my new lungs to good use!

me and carly in vancouver

we went zip treking in whistler too!

oncologist

This is a lot of information, and I'm kind of just jotting down notes for myself, explaining it all out for others so I don't have to re-hash everything. If you feel like skipping to the end to the: make you feel good you can breathe stuff, skim on down, sweet chikitas, bananas of mine!

Okay. so I am a lot more confident today. I'm exhausted. Absolutely exhausted, but I'm pretty sure I'm gonna be just dandy.

I saw the oncologist at PMH today. He is a lovely man, the team is lovely. He squeezed my case in this morning, even though I have been in contact with him for 5 days. So they had the whole number of team at the hospital working closely on my case today: How peculiar it is, the position the mass is in, how particular the position is close to the nerves, artery etc to the brain....and they came up with a plan and I like it.
They also had the pathologist in the room who studied the biopsy results. Because the mass/tumour is not huge and the spot it is located in, it was hard to get a good sample from the biopsy. Meaning they are still NOT sure whether it is all polly cells, or whether there are some monomorphic cells mixed in as well leading to full on lymphoma cancer.

SO the things they do know. It is PTLD. They need to treat it, and another biopsy or surgery is not going to show the whole mass of cells. My symptoms for the past 2 months, debilitating headaches, neck pains, morphine needed for pain, they said they need to be more aggressive, they don't want to take a chance because of the location of the tumour in my head.


Monday I start a light chemotherapy, no hair loss (good I just got my locks back! thumbs up) not too crazy side effects, nothing that I'm not used to, bruising, lower immune system (stay away if your sick please!), some nauseousness, although they said chemotherapy is MUCH better then what they used to have. So really they are more just concerned with my new lungs and getting infections and watching those closely while I'm on the chemo. I just have to go in once a week every monday, for four doses (is it weird that I wrote 'I just have to' talking about chemo therapy as if 'I just have to run out to the store for some dental floss, be right back'...oy!).

So yeah... some chemotherapy for a month, then this bad ass tumour will liquify away. I'll have august to enjoy, (start my speech for the fashion show, find my dress, get my nails all did ha) and get back at life!

I feel much more confident with this decision. I like the team. I trust my transplant doctor who is ALL over the ball. He walked over to MS hospital today to get me an appointment tomorrow morning with a skull/cranium specialist to do another biopsy for fungus (a very dangerous thing for TX patients to have) in my sinuses, to look over my MRI of my head at this abscess this see that may have to be drained before  I start chemotherapy to make sure I am totally infection free. This doctor calls me today and says "Hey Hattie, just your every day phone call from me, telling you what's up" umm...melt? Love him. What a lovely man. Very confident in the care he is giving me and working with my oncologist doctor my infectious disease doctor, my haematologist doctor (guys you need advice on different types of doctors, I got recommendations coming out my bee hind!) and everyone else. Great communication I feel. 

After this appointment tomorrow I will have officially been to EVERY hospital in the downtown core. Imaginary hat, Imaginary bow.
Tour guide? You need it. I got it.

On another note. Tomorrow I drop from 100mgs at 5 days, back to 7.5mgs of prednisone, my lovely regular dosage of steroid. No more Jekyll and Hyde action going on. Brain rest easy. It'll be out of your body soon!

Not to thrilled with the biopsy tomorrow...the last one has left me VERY traumatized, but my Lung Dr. said he talked to the skull Dr and he is confident he can freeze me and give me a much better biopsy experience (well numero uno...they didn't even freeze me last time, even though I asked, so it's already looking up!)
The cranium/skull dr. is a staff resident he knows how apprehensive I am about this biopsy. This is the biopsy that I got done as my mother starts crying in the hallway as she hears me screaming,with these new power lungs, in agony and pain as a RESIDENT, (I know right that was my first mistake letting a resident do the biopsy) rips a chunk of skin off the tumour. aye yai yai. Anyways, so tomorrow will be dandy. And everything will be finally figured out. I head up to the cottage on Friday. ice cream cones. sticky fingers. sand between your toes. sun kissed faces. races in bare feet. drip drizzle sand castles. bonfire smores. ahh. heaven. 


They say the first year is the hardest. And PTLD just got slipped in before my one year lungiversary. Never the less. I had an amazing time in the park, walking around the city, going out for dinner, and spending it with some of the people I love! Such positive thought and energy going on. It was great! Here are a few photos.  

summer colours are rad

friends that warm my heart

yeah...I can ride bikes NOW. no big deal. LOVING it. thanks donor JD

my jenos

swins. stuffing faces with sushi. (vegetarian for me of course ;)

oldest friend I know. QM. What a gem in a sparkle.