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.........

Bree

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...

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 CF2chat.com 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.

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)

The Big H!

Today I had an appointment with my new gynecologic oncologist for my Lynch Syndrome.  She is awesome and if any of you need to see an oncologist for lady parts I recommend her at Dana Farber in Boston (just send me a FB message!). 

I really had no idea what to expect but I knew that one question I had was about a hysterectomy.  I've gotten the run around, kind of, whenever I ask about it with other doctors.  Even my regular OB-GYN was a little hesitant to say yes go for it.  Totally understandable it is a HUGE choice to make.  But I also wanted to hear from a doctor that deals with cancer regularly.  Someone who would be able to say yes you are a good candidate or no you should wait a few years.  Someone who would take into account the CF aspect and not my age.  Yes I am young to be totally taking away my chance to have a baby.  However, given the set of genes I was dealt, I don't think I want to risk passing it on.  As much as I would L-O-V-E to have a baby it is not an option.  I won't bore you with the intricacies as I have posted many times about it.  And something I have been thinking about since my diagnosis almost 2 years ago.

When I mentioned I was thinking about a hysterectomy she immedicately jumped on board with it.  She actually just recently performed one on another CF patient!  That eased my mind a great deal to know she has dealt with a CF patient before.  She completely understood my concerns, my excitement, my questions and my slight hesitation.  I've asked other CFers that have had this procedure done so I was able to ask some other things about afterwards, sex, hormones etc.  Nothing is as scary as I had thought, and the whole thing is done by laproscopic surgery.  That means I will only have a small 1-2 inch scar on my abdomen!  I can deal with that!

I was caught off guard when they came in to schedule the surgery!  I was so used to hearing, lets talk about it another time, that I hadn't expected to walk out of there with a tentative surgery date in place.  Works for me though as I know I want to get things scheduled so when I have to make my transplant consult I will know my free time.  And this also takes 2 questions off of my transplant list. 

So all in all I was quite happy with my appointment today and am looking forward to a period free life in just a few months!

Words I needed to Hear

Tonight I relaized something. 

I have the best boyfriend I could ever ask for :)

Cheesy?  Yes.  True? Definitely!

One of my faults is that I don't think I do enough around the house.  That I am lazy etc.  I know I do a lot.  I cook and clean and do the wash and food shop.  And pay some some bills that I can afford.  Plus work part time and take a class.  So I am not lazy but I worry that I am.  I've always felt that working at a job meant you weren't lazy and when you didn't work you were.  That was why I struggled with going out on SSDI for so long.  And sometimes I still wonder if I should go back to work full time (Then I spend a week sleeping till noon and realize why I am on disability).  But I digress.  Because of this, I feel bad when I tell P I slept till 11am, or that I stayed on the sofa all day because I was exhausted.  I feel like "ummm you fat lazy ass there is no reason to be exhausted, get up and clean or do something". 

But tonight he made me feel muuuuuuch better.

It's been a very busy couple of weeks between his doctors appointments, his father passing away, Easter, and school vacation (for those not in MA, the kids get a freaking week off of school for Easter break...sorry Spring break).  Today was the services for his dad so we were out all day long.  I was going to do wash Saturday or Sunday but I forgot.  When we got home today I sighed and commented I didn't want to do the wash tonight.  P said not to worry about it I was exhausted.  To which I replied "but I haven't done anything".  And he said the magic words "you do plenty and some things about how I need rest".  (Now I know some of you are thinking "he could have done the wash" but its my job, I like doing it because it makes me feel like I am pulling my weight and he knows that - see above paragraph about my insanity lol).  I can't remember what he said exactly anymore but I know I felt 1000 times better about everything when he said that.

So yes I do have the BEST boyfriend in the world <3

Sex and Cf (PG-13...I think)

Such a taboo topic sometimes.  And I know many of us get all red faced and embarrassed when we talk about it.  But someone needs to right?!?!

Sex and having CF.  What does this mean for us? 

For me it meant no changes to my sexual behaviors until a few months ago.  I could do anything and not be hindered by my lack of lung function.  However, as I watch my FEV1 slowly decline, I see a decline in my tolerance with sex as well.  Such a bad correlation.  It's logical for it to happen but why must it?

P would probably and will probably beat me for postong some of this stuff, but I won't be graphic LOL. 

Sex for me now means no on top action.  If I decide to "take the plundge" I last about 2 minutes, though it feels like an hour, till I must roll over and practically die and let him do the work.  So lately I have forgone the attempt and just been the rag doll.  I HATE IT.  Not being able to be active during sex is one of the worst things ever (besides not being able to breathe which coincides lol).  You can still enjoy yourself when he takes the lead, but how many of us actually enjoy ALWAYS letting him take the lead?  We want to be in charge sometimes right?  Why must CF take that away too?

I doubt I am the only one out there who experiences this so the door is open, respond with your comments, but remember this is a public blog so please no graphic details ;)

The Pity Look

You know that look.  When someone looks at you and you can see the pity in their eyes.  They cock their head to the side and shake it softly. 

I experienced this on Thursday when I went to see my PCP.  She is hard to get an appointment with since she is working only one day a week while waiting for the baby to come.  So I couldn't get in to see her but I got to see one of her team members (The place is HUGE but they are broken down into groups of 4-5 doctors so if you NEED to see someone and your primary isn't there you can see someone who is relatively familiar with your file).  I had to get some refferrals for upcoming appointments and also see about upping my anti-depressant dosing.  We were chatting and he listened to my lungs and asked how I was doing CF wise.  I told him how my CF doctor wanted me to meet the transplant team and gave him a brief synopsis.  That's when I got the pity-head-nod-stare. 

We also chatted about my depression, mood swings and irritablity.  We decided to try upping the Celexa to 40mgs a day instead of 20mgs.  So far I feel wonderful!  This weekend was the first weekend in MONTHS I haven't wanted to rip someone's head off and kick it across the lake.  Granted it was also the first real SPRING weekend we have had but we will see how this week pans out. 

What really impressed me was that my PCP called me later Thursday to check on me and make sure I was ok.  She had talked to the doctor I had seen and she wanted to just touch base with me.  She also promised to come in and see me on May 13th when I am there again for my follow up.  I really appreciated her calling me and I will be sticking with this place as long as I can!  I really liked her when I had met her before but this really solidified it for me.

IV Time

IV time we go, IV time we go, hi ho the dairy-o IV time we go

Yep I am almost 98% sure when I go back to see Dr D she will want to put me in and I think I shall agree.  My SOB-ness is ridiculous.  I wheeze so bad I think the girl next to me in class tonight heard me during the "lull" in the movie.  I've been walking MUCH slower than I normally do.  And I cough up goo almost all the time.  Add in some streaking and yeah its time!

My next appointment isn't until April 27th but I am calling tomorrow to see if I can move it up some.  Ironically I was supposed to go in tomorrow but thought it was too soon since she wanted to see me in 2 months and I had scheduled it for 1.

I orginally changed it because, yes, it was only a month, but also because I was trying to wait till classes were over before going in.  And I wanted to get my new laptop first too.  With the new laptop I can get homework done while in there.  But now I don't want to wait another month or so before getting this taken care of.  I'll just make sure I can schedule to go in on a Wednesday and be home on the following Monday so I don't miss any class time.

I have also been exercising daily doing Jillian Michaels no more trouble zones.  However, I can only do the 5 minute warm up and then I am exhausted and done.  5 minutes of straight cardio kicks my ass and I don't even do the jumping jacks!  I do use my O2.  The first few times I didn't just to see and my HR was hitting over 170!  So now it stays around 155-165.  With my O2 around 92%.  So not too bad.

One thing I MUST ask Dr D about is a port.  I will NOT go through that horror of a placement again like I did around Thanksgiving!!!

So I shall keep everyone posted.

The CF body

Have you noticed the typical CF body?  Skinny arms, wide chest, barely having hips.  Yeah I have it too.  And I HATE it! 

With bathing suit season fast approaching (though when you look out my window and see 3 inches of snow on the first of April you don't see how it is fast approaching), I went shopping for an updated new two piece.  I can't wear one pieces, they make me feel like a boy, seriously.  Unfortunately I haven't tried it on yet; I'm too scared.  I know exactly how I will look and I am dreading it.  To this day I still feel like one of those mal-nourished kids from Africa that you see plastered on the TVs all the time.  Skinny arms and legs and big, bloated bellies.  Only mine is up higher in my chest area, well an partially down in my gut too. 

I have no boobs (Victoria's secret stopped making my favorite bra years ago in my size from lack of consumer need - I've been told) but this HUGE chest.  Think size 14 bridesmaid dress and a dress sales lady trying to tell me I need a 4 not a 14.  I proved her sorry ass wrong haha!  But it has me very self conscious.  My chest is wider than my hips.  I can't wear any tops or dresses that zipper because they won't fit.  Anything tight looks stupid on me.  I feel fat and gross.  And I KNOW I am not.  That's what gets me.

I AM NOT COMFORTABLE IN MY BODY!!!!!

And its not like it is something I can change.  I can't make my rib cage get smaller.  I can exercise all I want but its not going away.  When I put on weight it doesn't go to my skinny arms, it goes to my already bloated belly.  It's something I need to work on and improve. 

CF doesn't fuck you up enough it has to mess with your self esteem too :P