Wednesday, September 29, 2010

Letting Go - an article to read

Letting Go

This is a response I wrote on a thread on CF2Chat.  Please read the article and respond.

"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end."

Is my favorite quote from the article.  And I can not agree more with it.  You may be deemed a hero for standing up and battling till the last breath, but what is it for?  Especially if deep down inside you knew you would be battling till the death.  Wouldn't you want to enjoy those last deaths?

I have 2 examples I am going to draw from.  One is my step-mom who passed away in July and the other is my pop-pop who passed away 4 years ago next month.  They are opposite stories with Cancer as the leading player.

My Step mom was diagnosed with breast cancer 6 years ago.  They treated it for a year and it went into remission.  A year or two later it returned.  Again they treated it and it went into remission.  Two years ago she was again diagnosed with breast cancer but also in her lymph nodes.  She decided to treat it aggressively again and hoped it would go into remission.  It didn't.  It spread to her bone marrow.  She was on hardcore chemo, trying the IVs, testing the chemo pills.  Anything she could to stop it.  She was still working and exhausted.  When she got home from work she fell asleep and slept till morning. She had stopped living.  But she still went on.  Eventually she decided to stop work and concentrate on beating the cancer.  She continued chemo and radiation, whatever would "help", only to have it spread to her brain this past summer.  At that point it was obvious to most of us that she would not beat the cancer.  For it to spread while getting racked with major treatments, meant it was a doozy of a disease.  But still she fought on with the chemo.  The middle of June she was admitted to the hospital after calling 911 because she couldn't stand up to get out of her car and she was alone.  She never left the hospital.  3 weeks later, as she was laying there totally unconscious, my dad made the choice to stop treatments and let her die peacefully.  I still remember the phone call.  He was devastated but could not watch her suffer anymore.  The following day she passed.

Her last year was horrible.  She slept almost 20 hours a day and had no energy.  She was not the same woman he had married.  She had died already, but her body was still alive, being kept that way with the chemo and drugs.  I do not blame her for her choice to fight.  Personally I would not have tried for so long, but then again I have been facing my mortality from age 5.  She wanted to see her grand children grow up and to live longer, she was only 65.  But at some point don't you have to ask yourself quality over quantity?

Then there is my pop-pop.  My mom-mom had died about 1.5 years before he was diagnosed with lung cancer.  Now this was a man who had a stroke at 35, a massive one, recovered and was NEVER sick another day until he got cancer.  We were upset, especially when he told us he was denying treatment, much like my mom-mom had (she lived 5 days after finding out she had brain, lung, liver, kidney, and bone? cancer).  But we respected his choice.  It was his life.  What we were not prepared for was learning how bad the cancer was.  He had told us it was OK, it wasn't bad.  But as he progressed he made my mom and aunt legally allowed to talk to the doctor.  He told them it was stage 5 and he wouldn't not live much longer.  So we went from thinking he had months and months and months to live, to maybe having only one month.  He had kept it from us so we wouldn't try to pressure him to get chemo etc.  We found out in March about the cancer, and in July or August how bad it really was.  The beginning of October he got really sick and my mom and aunt could not take care of him.  They had moved in and taken leave of absences from work to take care of him full time.  We had him put in a nursing home for a few days so they could fight the infection that had taken over.  I remember visiting him on my way to my birthday dinner.  I told him I loved him.  It was the last time I would see him awake.  He came home a few days later and hospice was sent out.  They were wonderful.  He had stopped eating and drinking and we knew it was a matter of days.  October 20th I went to the movies for the release of the movie Flicka with a friend of mine.  I was planning on getting up early the next morning to go see him again.  But an hour after I got home my mom called and told me he had passed away.  I rushed over to see him and say goodbye.

My pop-pop lived 6 months with no treatment.  Though he may not have been in excellent health (duh) and declined rapidly towards the end, he was able to spend time with his new great grandson, his kids and his grandkids.  My nephew remembers him, through pictures, as a fun happy peaceful man.  Not a sick man.  I still remember my pop-pop sitting in the chair in the driveway on mother's day while my nephew ran around him and slapped him high-five every time he got to him.  I've never seen my pop-pop so happy.  I know moments like that went through his head in his last few hours.  The point is he enjoyed his last moments on earth and did not try to fight them.  He knew cancer would kill him and he had accepted it.  And once we knew his decision we accepted it as well.

I think that any disease can be fought, but, like General Lee, you need to know when to surrender.  You need to know when you are tired of trying and want to just live in anyway you can.  Even if it means stopping treatments, especially if it means you stop treatments.

Monday, September 27, 2010

Playing the Learning Game

We all go through this....learning our limits with CF.

Whether or not we ever pay attention to those limits is another story.  Me, I seem to pay attention on occasion.  However, there are nights like tonight when I bypass all reason and pretend I am a normal, healthy 29 year old woman.

What did I do you ask?  Well....I rearranged the kitchen cabinets....all of them.  At 6pm at night, 8 hours after my last treatment.

It all started when the UPS guy delivered my Altera cleaning kit from CFServices Pharmacy.  It includes a NUK baby bottle sterilizer and some Tupperware.  The sterilizer machine is not exactly small so I needed to find room on our already cluttered, too small kitchen counters for it.  This lead to cleaning out the pots and pans cabinet, which lead to the "pantry closet", which lead to the pasta cabinet, which lead to the canned goods cabinet, which lead to the bread and baking cabinet, which lead to the spices cabinet, which lead to the cabinet above the fridge.  We only have one more cabinet, the dishes and glasses one which I left alone.  I spent over an hour doing this, amidst my boyfriend telling me to slow down and shaking his head.  And no, there is no way he could help me because I would get frustrated and annoyed so its better for me to do it alone, which he knows.

While I might be feeling better from the Cipro, I am far from back to baseline.  To prove just how far away, my lungs decided to play fun games back with me.  Each time I coughed, my sight went narrow and I almost blacked out.  What makes it even more fun is standing on a stool when it happens.  Again, it only took me an hour to do all this so I was able to relax afterwards.  But the repercussions will last all night and most likely into tomorrow as well.  My back hurts ridiculously, my lungs are still throbbing and I am coughing up streaky mucus.  I will be a smart CF woman and go to bed early, and sleep late again tomorrow.

Thursday, September 23, 2010

Inviting your CF doctor to your wedding....weird?

Is it weird to want to invite my old CF doctor to my wedding?  A topic came up on CF2chat and my answer included inviting Dr H to my wedding when I get married.  But then it made me wonder if that is strange.  And if he would really come.  And if I would have to invite the NP and one really awesome secretary that was there.

I would love to invite him since I had been seeing him since age 5.  He really is like a second father to me.  But I am unsure of the protocol for things like this ya know.

What do you all think?

And BTW, no I am not engaged or anything, like I said, the topic came up and I wanted to expand on it :)

Tuesday, September 21, 2010

Clinic Appointment - impressive

I am so glad I ended up going to clinic today.  Originally when I made the appointment I was told I could cancel if I felt better by yesterday.  I felt better but not great so I decided to just go anyway and get my prescription for Cipro.  Well, thankfully I did!  I ended up being much sicker than I thought and if this round of Cipro doesn't do the trick it is back in the hospital for IVs for me.

They did a pre and post pft on me.  Pre was crappy (must interject here and remind everyone that the numbers my new clinic uses are different than my old clinic uses.  So while my numbers might look "ok" here, in my old clinic they are 3-4% worse).  I will post what they would be for both so you know what I mean and can see what I base things on.  Since I am used to my old clinic and how the numbers there correlated with how I felt I use those mainly.

PRE: (Penn)

FVC - 1.92L 56%
FEV1 - 1.06L 36% (33%)
FEV1/FVC - 55%
FEF25-75 - .43L 12%

POST: (Penn)

FVC - 2.16L 63%

FEV1 - 1.20L 41% (37%)
FEV1/FVC - 56%
FEF25-75 - .51L 15%

Aug 3rd (Penn)

FVC - 2.39L 70%
FEV1 - 1.45L 49% (46%)
FEV1/FVC - 56%
FEF25-75 - .69L 20%

My weight was also down slightly.  In August I was 120lbs and today I was 118lbs.

As you can see this cold has beat my lungs up quite a bit.  To combat this, I picked up my prescription for 750mgs of Cipro, twice a day, and also started the paperwork to get Cayston!  Yay I am super excited!  I have been wanting to try this new antibiotic and we are finally going to try it.  Hopefully I will be able to tolerate it, unlike Colistin and TOBI.  My culture shows I am sensitive to it, so all that is left is to test it out.  She said to make sure I do my albuterol and symbicort before taking the Cayston.  Fine by me.  I need an inhaled antibiotic.  Ever since I had to stop TOBI, and not being able to take Colistin, I have felt very vulnerable to infections.  Only having orals and IVs to fight off lung infections is no fun.  

One final note, I got my flu shot today so now I am protected for the winter.  Let's just hope the strand of the flu that runs rampant is the strand in the shot I got.

I'll be sure to update again after my appointment on October 5th.   

Saturday, September 18, 2010

What would you do....

for a Klondike

No, that's not really where I was going with that but it popped in my head when I wrote it so I had to go there.

What I was really going for was,what would you do with new lungs?  What prompted this was a post by fellow blogging Cyster Piper.  It got my wheels a turning and I just had to go with it.  She talks about her amazing life with new lungs.  I will quote one piece of it since it sounded like me in a few years when I am transplanted and breathing again like I should be.  "My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it."

Me...I don't even know where to start.

I know I would go dancing.  I would ride a horse.  I would spend a day at the park running around.  I would chase after puppies.  I would laugh until I was blue in the face...and not from lack of O2 like now.  I would climb to the top of Bunker Hill.  I would do a walking tour of all my favorite cities.  I would play volleyball.  I would laugh all day long.  I would sing, even though it would be out of key.  I would go camping in the woods with NO electricity.  I would laugh for hours.  I would run.  I would travel.  I would laugh.

Notice a theme?  Laughing!  Yes that's right.  I can't wait to laugh and laugh and laugh and not turn blue and red from coughing afterwards.

What would YOU do with new lungs?

Wednesday, September 15, 2010

Cold Season

Yep, that time of year is here again.  Where coughing, sniffling, sneezing and wheezing are part of the daily routine...and I don't mean for me!  School is back in session and so are the germs.  I was "fortunate" enough to catch something.  And now, I have the raspy voice, raw throat, sniffling nose and achy lungs.  Grrrrreat.

I am pretty sure it is not just from school starting up.  Between the weekend down in PA with so many kids and parties and lack of sleep, I think my body just hit its limit.

I have been taking it easy since yesterday, just doing what I need to do and that's it.  Tomorrow I plan on sleeping or at least laying in bed all day.  Friday I really want to go to the Jumper's Classic in NH.  But that will depend on how I feel.

I started back on my saline rinses but as of right now nothing is getting through.  So maybe in a few days my nose will clear out some and the saline can get through it.  I also bought Vitamin C drops and some throat drops to try to help.  Along with sucking on lemon wedges (a friend told me about this) and restarting the Keflex that my doctor had taken me off of.  I'll give it till next Tuesday then call in and ask for some Cipro.  This is not the way I wanted to start the fall season!

Come October 5th when I have my next appointment, I hope to get my flu shot.

Monday, September 13, 2010


I don't know where to start!

This weekend was amazing!

We were supposed to be heading down to PA for my god-daughter's first birthday party, but it ended up being so much more!!!  I walked into my mom's house Friday night to over 60 people yelling SURPRISE to me!  They threw me a surprise 30th birthday party...30 days early lol.

I was floored and still in shock and had no idea what exactly everyone was doing there.  Took me a few minutes to realize that it was a birthday party!  I thought everyone was there to say hi haha!  Funniest part is that my brother was"at my mom's with the kids" and text me around 7:30 to see when I would be there because Kayla was getting fussy.  I said about an hour and go home if she is too bad.  Then my mom text me like 20 minutes later asking the same thing.  I told her the same thing I told him.  So then I kept her updated when we crossed the bridge into PA etc.  Well here, Peter was texting her too!  When we drove on the street there were a bunch of cars parked and I commented that someone must be having a party!  HA!  Little did I know it was MY party!  Peter said he laughed on the inside at that!

It was so awesome to see all my friends and my family, including those on my dad's side who I don't see all that often, there.  I had been saying to Peter just that day, that we needed to have a party so everyone could meet him at once!  Bastard knew ;)

I really enjoyed seeing everyone and the cake and presents and everything.  It was a green themed party!  Me and my save the world self.  Here are some pictures to see what I mean:

this is made from ivy (took it the next day so you could see it)

And we played Pin the Tail on Premiere!  My old show buddy, such a fabulous horse!

I definitely felt the love that night!!!  My mom made a video picture montage of me up until now and I want to post it SO bad but the way it is on the DVD makes it impossible :(  Look for a future post with a few select pictures of what was on it though.  And my dad had brought my mom down a folder of all the things my brother and I had made him as kids.  It was so funny seeing stuff from kindergarten and preschool and letters to Santa, from Santa, cards I made him.  It was so sweet!  And boy did I LOVE to color haha!!!  And thanks to my dad's early birthday gift, I was able to register for my art class last night!  It was the second best birthday present I got (first being the party)!!!

Saturday however, I got even better news!  I was approved for SSDI and had my first deposit in the bank.  Hoping to get a letter this week with all my info.  Unfortunately, all that money I got goes right to my LTD company, but that's OK because at least now I am officially disabled!

Tuesday, September 7, 2010

33 days till my 30th birthday!

My title really has nothing to do with my post I just wanted to say it LOL
I must apologize to my bloggie friends for not posting recently!  I have been busy with minor things and visiting family etc.  School starts back tomorrow and I will be back on the blogging bandwagon again.

This past weekend (which was Labor Day here in the States) Peter and I went away to a friends cabin up in NH.  We had so much fun!!!  You have to get to their cabin by boat which just rules!  No cars, no traffic, no telephone poles!  Just pure nature.  We had a fire going for most of the weekend since it was chilly.  The fire was great, inhaling the smoke not so much.  I am paying for it now with some bad SOB and lots of coughing.  A few days of hardcore vesting and neb treatments will hopefully set me straight.

Saturday and Sunday the lake was too choppy to do much boating.  We went out for a bit but we all ended up drenched by the time we got back in.  Monday however, the lake was calm and the sun was shinning.  We spent 2 hours riding around and it was awesome.  I love the wind and sun in my face!  We saw para-sailors and other boaters out.  I took a picture of a bridge I want to sketch too.  All in all a fabulous day.

As I stated earlier, tomorrow school starts again and I can get back to a routine.  This time I will have the full 9.5 months to get into one before next summer starts.  This week will be hectic since we are going back down to PA this weekend for my god-daughter's first birthday party.  So next Monday all hell will break lose here in MA!  I am still vesting, now I need to exercise.  I plan on starting at 3 days a week and working my way up.  M-W-F will be my Jillian Michaels days.  T-Th maybe I can take walks around the lake here.  I will need to bring my O2 though, as I know I will be walking a lot if I go.  My tolerance needs to be built up, both in my muscles and in my lungs.