Sunday, May 29, 2011

Saying Goodbye... (edited)

Saturday was Bree's Celebration of life.  And a celebration it was.  There were so many people there!  Such a testament to what an amazing person she was.

I met her sister first.  I told her who I was and that I was there to show the family our support from all of the online friends Bree made, and who couldn't be there themselves.  She asked me where I was from to which I obviously replied Boston, MA. She got this look of pure wonder on her face and started crying.  She gave me a huge hug and told me should was so thankful I came this far for them.  That of course made me sob lol.  I met her parents next.  They are so awesome!  I see where Bree got her personality from.  I stayed for a bit to watch the slide show and to just look around at the people.  I flew 401 miles and drove 104 miles to be there, I was going to make my time worth it and not stay only 15 minutes.

I got a few extra memorial cards to send to some people who wanted to be there but couldn't.

After I left I decided to take a trip to Chapters.  Bree's favorite place.  It was kind of surreal walking around the store that she has frequented so often.  I bought two books while there.  I know she would appreciate them both.

I drove around a bit and was able to see the University of Guelph.  Its a beautiful city!  I took a few pictures to document what I saw and so those that wished they could be there can look at these and maybe feel like they were.

That night and again Sunday when I was going home, I felt depressed.  Just down and blue.  When I returned to my hotel room after the adventure around town, I had an overwhelming desire to go home.  I was dreadfully homesick - something that very rarely happens, and only has when I have been in the hospital.  And the suckiest part was I could not use my phone because it was on roaming.  I connected to WiFi though so I at least could talk to P that way.  Luckily when I woke up I felt better for a bit.

I still can't believe she is gone.  It still doesn't seem real to me.  I miss her so much.  I know it time the pain will dull, but that does little to console now.  I just want to talk to her one more time.  To see her post a sarcastic witty status update.  To make a goofy comment on one of my pictures.

I'll see her again some day.  This I know is true.

Almost there!

The Funeral Home

Her favorite store

My two books I bought at Chapters

city limits

yes I pulled over to take these two!

Tim Horton's - her tea haven

A few weeks ago, before I knew what critical condition Bree was in, I had the weirdest dream.  At this point it is foggy in my memory but I remember having to cross this ridiculously looooong bridge into Canada and at one point we were basically hoping from "cloud to cloud" to get across.  We got on a boat that floated (much like in Mario Bros lol) and that took us the rest of the way.  It took a few years to cross to Canada, and since I had done this on accident I had to wait till there was another ship returning to the states.

Saturday as I was crossing the bridge into Canada, I had the strangest deja vu.  My dream immediately came to my mind and I knew I was supposed to be there.  Of course it didn't take me years to cross the bridge, but in a way it did.  I became friends with Bree 4 years ago.  And it took me till she passed to make the journey to see her.  There was no "her" in the physical sense (they are doing an autopsy to see just what happened to her) but she was all around us that day.  In the laughter, the tears, the tea, her recipes that the family cooked for everyone, the music and the pictures.  She was there.  And I am so thankful that I was there too.

Thursday, May 26, 2011

My heart is heavy

Bree, our beloved Bree, passed away yesterday on May 25th. She is at peace and with her friends Megs and Karyn and all those that have gone before her.

My heart is broken. I am so sad that I will never be able to talk to her again. I'll never be able to see WOMAN!!!!! pop up on my screen. I'll never be able to use all those funny MSN smileys with someone and giggle like a school girl when the chick is burning. I'll never be able to send her texts messages and I'll never have an escape plan (she always told me if I needed to run away from the US as a convict I was welcome to stay with her lol).

I've never met Bree. I've never talked to her on the phone. I've never heard her voice. But we were close. I count her as one of my closest online friends. We shared so much. All the aspects of lung disease that you can think of. All the aspects of med side affects you can think of. We talked about the funny, the gross, the down right nasty. And through it all we just laughed and coughed and smiled.

The online world is now a much less lively place. Her blog would cause uncontrollable laughter followed by uncontrollable coughing. But it was always worth it. She had a way with words. One that I was always jealous of. She made her posts come to life and bring insanity into your world. She was a character. And that character has been written out of this world's script.

These past few months as she became sicker and sicker I just prayed that she would make it out alive. Even if it meant she had to be blind for the rest of her life, as long as she was alive and happy and healthy I would be happy. But it didn't happen. The virus she caught proved to be too much. I just hope she didn't suffer.

I remember almost 2 years ago when she got the call that saved her life. I remember being so ecstatic and elated that she was getting her chance to breathe again. I also remember being nervous and scared. I kept thinking what would I do if she didn't make it? How would I live without being able to talk to her almost daily? I was filled with such conflicting emotions. When she came out on the other side like a champ I was doubly excited. She was back and she was going to stay with us for a very long time.

I'll never forget her. My first memory is when we were both members of "that" site a couple of years back. She was blogging on there and the first post I read by her was about her need to wear oxygen when she was driving to work and while she was at work. She was so young, 21 I think. I was sad that a young vibrant woman needed to wear O2 and needed a transplant. It was my first real look into the lives of those with lung disease, besides my own. She showed me a lot of things and I will never be able to repay her for that.

At this point I have come to a fork - should I make the 10 hour trip to the funeral, or should I mourn from home. I want nothing more than to say goodbye to her. For me, seeing the services is what makes it real to me. I know it is real, I know she is gone, but seeing her memorial will really hit it home for me. Much like when Jenn passed. It wasn't real and I didn't really cry till the services. I've cried for Bree, but nothing like I would if I was there. I have till tomorrow to decide since her services are on Saturday at 3pm.

Breathe Easy my friend. Until we meet again.........

Tuesday, May 17, 2011


Everyone out there in blog land please please please send some prayers and positive thoughts to my friend Bree.  She is not doing well and her family has removed her from life support.  I am sad and upset and angry and everything else that you feel when you know a friend may not be around much longer...

Monday, May 16, 2011

Pondering the fatal infection

Do you ever have a hard time sleeping or falling asleep?  Is it because your mind won't shut off and let you just relax?  Do you think of stupid shit that you would much rather not think about, but if you had to, to at least do it during daylight hours?

Yeah that was me last night and this morning.

The passing of a friend on Friday has made a few of us remember that we need to get our advanced directives in order.  Most of us have thought about it and started the process but never got around to finishing it.  Another poster on let us read some of what she had written down and encouraged us to "steal" what we wanted to for ours.  So Saturday night I spent 2 hours writing mine out.  Details like me not wanting to be kept on life support if I have no chance of recovery.  My desire to be buried with Maggie when I am cremated.  Things like that.  It felt good to get it all written down and printed out.  Now I just need to get it signed.

I guess last night my mind finally took those actions to heart.

I got scared lying in bed.

What if that nasty infection that can kill me, kills me soon?

See told you it was something stupid.  OK maybe not entirely stupid since it really could happen, but why think about it at 3am?

What if all the IVs I do and all the breathing treatments and all the therapy does not stop it?  What if I wake up one morning to horrible pain and find that my one lung has stopped working entirely?  What if I get so sick I can not be placed on the transplant list?

We think we will be strong and ready when our time comes, but will we?  I think back to my PICC fiasco (I know it is NOTHING like dying so please do not think I am making light of those who have passed) and how scared I was and all I kept thinking that this was not the way I wanted to die.  I had no idea what was going on.  All I knew was I couldn't breathe and there were doctors EVERYWHERE in my room.  I didn't want that to be my time and I am so thankful that it wasn't.

But how will I be if the infection ravages my body and I am laying there, in my bed, doped up on meds to help me relax and trying to breathe?  Will I have the strength to fight back?  Will I lay there and see what God has in store for me?  Will I just give up and let myself pass?

Those are the questions that kept me up partially last night, scared and afraid, but not willing to let myself speak it, only think it.

Saturday, May 14, 2011

Hospital Stay

This will be a long post so settle in a comfy seat, put your feet up and be prepared to read...

I went into the hospital on Thursday expecting to get my picc line placed on Friday, have a CT scan at some point and a colonoscopy on Monday.  My biggest worry was the picc placement given the reaction my body had last time to it.  Turned out to be the least of my worries...

Thursday night they wanted to get an O2 reading done on me again.  I had had that one back in November after my 3 week IV course and it showed I didn't need O2 with sleep.  Of course my lungs were in great shape so I didn't need it.  Thankfully they did another.  However, it was different than the first one I had.  They hooked me up to the finger monitor and the monitor was hooked into the nurses station computers.  Unfortunately the sound could not be turned down lower than 10% so when I would dip below 90% it would beep and I would hear it.  Every time I relaxed and just about feel asleep I would dip, it would beep and I would wake up.  Finally she came in and put the O2 on me since it kept beeping.  Slept like a rock the rest of the night!

Friday morning bright and early I was wheeled down to have my scan done.  I didn't have my morning meds yet so inhaling and holding my breath was not happening.  Of course they ask to do so and I try but I failed.  Such is the CF life.  By the time I got back to my room the picc nurse was ready to poke me.  Dr BE (name has been changed) ordered a shot of Benadryl to be given to me via IV so I would be awake but not anxious.  It worked.  I was pretty much dead to the world for the rest of the day!

PT came to my room to do a 6 minute walk test on me.  I did well considering I am in the throws of an exacerbation.  I walked 1270 feet in 6 minutes (average for someone my age is 2500-3000 feet) and only needed 1L of O2 while walking.  We were going to attempt no O2 but my sats just standing there were 89%.  The Benadryl really messed my lungs up that day.

Saturday was to be the start of my colonoscopy prep.  Just clear liquids all day which meant jello and chicken broth.  Yum!  Sunday I started the clean out part.  By the time I went to bed that night I was pretty sure I was ready for the next day.  My CF gut had other plans however.

I was able to do the upper but not the lower.  I was too full to get any ideas of what was going on in there.  When she told me this I got upset.  I was frustrated, annoyed, angry and depressed.  I had already felt kind of crappy to begin with before the procedure and afterwards just threw me over the edge.  When I met Dr BE in my room later I was crying.  The nurses were great and really tried to cheer me up.  Poor Dr BE.  Last time I was in I was crying with him and again this time.  The guy must think I am a mess!  I could see the sympathy in his eyes and it made me feel better.  So now instead of looking forward to a yummy solid meal, I had to do another FULL round of cleaning out.  But what was the question.

At first Golytely was the choice.  But given that last time I tried it I basically got one cup down and threw up, I wasn't for trying it again.  I decided to just have an NG tube placed and have them push the Golytely down in and have it work that way.  That didn't happen.  We tried the placement and I think I had an anxiety attack during.  I could feel it scraping my chest and then I was gasping for air.  A cyster had told me getting the tube through the sinuses was painful.  Ironically I barely felt that part.  They pulled it and we decided to give the Mag Citrate a go.  It was not as bad as I had remembered it from when I was 18.  I drank 3 bottles of that and stayed up till 2:30am to make sure there wouldn't be a mess in the bed overnight.

Colonoscopy take 2 was a success.  I was still not entirely clear but enough so that she was able to remove the polyps she found and send them out for biopsy.  So lets review this.  Friday night I took 2 ducolax to start the process.  Coupled with no food except a turkey sandwich that day, I was pretty empty - stomach wise - by Saturday.  Saturday was just clears.  Sunday the same thing, but I took 15 one dose packets of Mira-lax.  Monday I was not clear at all so I took 5 more packets of Mira-lax and 3 bottles of Mag Citrate
(which is a normal dose for a clean out).  All in all I did more than 2 full clean out regimens and was still not clear.  WTF?!?!?!?  Talk about a slooooow system!  I'm not sure how many polyps they removed but when I go to clinic this Wednesday they should have the results.  Last time I had a few benign polyps and one that was pre-cancerous.  Hopefully these are all benign.

Today I got the results of my CT scan.  Well I should say today I was lucid and sane enough to hear the results.  It was quite the informative scan I received!  My lungs show obvious signs of CF.  There was a pocket of infection which of course, was why I was there in the first place.  It showed some nodules on my thyroid which my doctor is not so much concerned about, but given my family history of cancer he gave me a number for an endocrinologist to see (he joked that I was on my way to seeing every specialist doctor at BWH!  not far off either).  My thyroid is working properly though.  They ordered blood work to be sure there were no issues there.  They also saw lymph nodes in my lungs - odd - that they want to monitor, again because of the family history.  So in 3 months I will get another CT scan done.  And finally they saw an air pocket below my heart that is undamaged but inaccessible.  It looks like I had an infection when I was a child and the healthy lung grew around it and blocked this part off.  So basically the lower lobe of my lung is shut off, yet unharmed.  It could explain the low lung functions even as a child.  That was it for the CT scan.  I told you it was informative!

My culture showed that the Steno Malt is still there.  Seems to me it hides when I am "healthy" then rears its head when it feels like it.  I have a feeling this is what is going to send me to transplant land much sooner than I had thought.  Speaking of which, my records have been sent over so I just need to call and make the appointment to meet with the team.

Funny...after hearing the words the first time I assumed, or rather hoped, it would not be mentioned again for a bit.  Now every time I see the team it is mentioned.  So I guess it really is something they feel I need to pursue now to be safe.  I've wrapped my head around the idea even if I am still unsure why me.  Though I know the answer, I just wonder why me sometimes.  And not in the "woe is me" way.  But more along the lines of "but I'm not THAT sick, am I?" way.

Thank you for reading this jumbled mess of a blog post.  I will be sure to keep you all informed of what results come back and all my upcoming appointments I have with the 5 different docs this month...

(edited - this was posted on Wednesday but for some reason blogger was messed up and it didn't register till Saturday)