Home from the Hospital

I am home from the hospital.  I actually got out on Monday but I have been so busy finishing up my paper, that I turned in Wednesday, and appointments, that I haven't been able to update.

I was admitted last Wednesday night and for some reason on Thursday afternoon I spiked a fever.  102.3 at its highest.  No flu, no blood infection.  Nothing out of the ordinary except that fever.  Tylenol brought it down and by Friday night I was back to normal.

The doctors started me on Q36 for the Tobra this time since we always end up at that point anyway.  Seemed to work well.  Then I came home.  I had 3 doses total when the nurse drew my labs Wednesday morning and I was told yesterday to stop taking it.  Kidneys are not happy.  WTF!?  So now I am on oral Bactrim, oral Cipro and IV Ceftaz, aka. cat piss.  Hoping my FEV1 came up a bit so that I can stop the IV Ceftaz before Christmas.  I have clinic on Tuesday.  My body never responds to orals.  This is just wonderful.

Yesterday, Thursday, I had my follow up appointment to my colonoscopy.  It was a little disconcerting.  My colon polyp was adenoma as usual.  That wasn't concerning.  But, like I mentioned before they were finally able to biopsy that pesky cyst on my pancreas.  Turns out it isn't CF related at all.  Its a precancerous cyst related to my Lynch Syndrome.  Like the adenoma in my colon, if left untreated it has the potential to turn to a cancerous tumor.  "Biopsy of your pancreatic cyst revealed benign cells and CEA level 825 with amylase less than 3.  This may be consistent with a mucincous type of precancerous pancreatic cancer."  Fabulous.  We didn't' discuss removing the cyst.  Honestly I was a bit in shock that it WAS something that I forgot to ask about surgery.  She wants to monitor it every 6 months with MRI/MRCP's again, and if it grows, I can talk to a pancreatic surgeon then.  I am going to email her about just having it removed.  I don't want that shit growing.  On the bright side, I don't need mammograms just yet...

That is all for me.  School is over and I am doing lots of crocheting and sleeping.  I will post an update next week after my clinic appointment.

Transplant and Cysts

This morning I heard from the transplant clinic.  I was not presented last week, but was this morning.  The results are what was expected.  I am too healthy to be listed right now.  Fine by me as I am not even 100% sure I WANT a transplant.  So this means that I go into clinic every 4-6 months to get looked over.  Any issues I encounter, any hospitalizations, any set backs, I need to let them know so they can add it to my file.

Today I also had my GI follow up to the colonoscopy and endoscopic ultrasound back in November.  Mostly good news. :)  OK actually its all relatively good news lol.  The 9 polyps removed from my colon were benign adenomas - cancer polyps IF left untreated for many MANY years.  She said there were 4 on the left side and 5 on the upper right side and that sides don't really matter as far as developing cancer.  But 9 is a lot especially for only being 18 months since my last one.  I was told I NEED to come back every 12 months at the most.  Looks like every Oct/Nov I get to clean my gut out.....yaaaaaay.....

The pancreatic cyst is still concerning to the docs.  I had thought it went from 1.5cm to 2.2 cms, but it was 1.2cms to 2.2 cms.  She said if I was JUST CF I would be told to have it checked every 1-2 years.  But since Lynch Syndrome can also affect the pancreas they are slightly worried it almost doubled in size in less than a year.  So while I am inpatient in Jan they are going to do an MRI with sedation (I can not do them because I have anxiety issues and they NEED one done so they are knocking me out lol) to get a better look at it.  She said they wanted to get a biopsy but its in an awkward spot.  The GI doc who did the tests is one of the best at Dana Farber and she couldn't get it so they need to go with the MRI and possibly surgery for a biopsy.  So after the MRI I am meeting with a pancreatic surgeon to, as she put it, cover my bases like with the transplant evaluation, I don't need it quite yet, but just in case.  Not overly concerning issues, but still issues that need to be followed up on.

There ya have it.  I am cancer safe for now, and hopefully after follow up tests I will remain so....

Bravo Disappointment

Where to start, where to start?

Shall I start last Wednesday when I got a phone call with a totally different time for my procedures than I had been told?

Shall I start on Friday when I finally talked to someone about the discrepancies in the times and was told a totally different time again?

Shall I start on Sunday when I actually began my prep for Wednesday's procedures?

Shall I start on Monday when I had to field a call that my health history doesn't allow me to do a phone pre-op and needed to come in mid-prep for it now?

Shall I start on Wednesday when those procedures where scheduled to go down?

Let's start on Friday..................

I finally received a phone call back from endoscopy about the discrepancy in the times.  I had been told the week before when everything was switched to Wednesday the 21st that my new time would be 2:15pm.  The phone call I received said 3pm.  When I spoke with the woman in endoscopy she told me 2:30 but I needed to be in at 1:45.  She also told me that I would get a phone call on Monday to do my pre-op screening since they were running slightly behind.  I said no problem.

Sunday I started my prep.  Yes SUNDAY.  4 days before anything was to be shoved in, up, down and around my body.  I have an extremely SLOW digestive system and this is the only way to ensure I am clean enough to get anything done on me.  So Sunday started my chicken broth, lemon water ice and lemon jello diet.  Yummy huh?  I also take 2 ducolax pills to get my system started.

Monday I receive a phone call from the SAME woman I spoke to on Friday.  She tells me that due to my health history I can not have a phone pre-op assessment and I need to come to BWH Tuesday morning at 9:45.  I nicely as I can after not eating anything of substance for 24 hours, that I am in the middle of my prep and that sitting in a hospital waiting room for 2 hours is not an option.  She tells me she will speak with someone and get back to me.  So she calls me a couple hours later and lets me know that they can get me in at 10am on Wednesday before my scheduled procedures and asks why I am prepping already.  Again I nicely as I can explain why.  I have also started my prep and finished 2 64oz bottles of apple juice with a total of 30 Miralax doses in them.  I am in the throws of "cleaning out."  I take 2 more ducolax pills to keep it going over night.

Tuesday is more of the same however, I am drinking magnesium citrate.  I don't feel it is working as well as I would like so when P is on his way home I ask him to get me another bottle of apple juice.  I added another 15 doses of Miralx to that and drank it for the rest of the night.  I take 2 more ducolax to again keep it going over night.

Wednesday morning.  I am nervous I am not as clean as I need to be.  I decide to use an enema for good measure.  Are you keeping track?  That is 45 doses of Miralax, 2 bottles of magnesium citrate, 6 ducolax pills and 1 enema.  Phew!  I was lucky enough to have my SIL drive me to the hospital and wait for me.  She is a doll!  Especially since we had to be there at 10am and my procedure wasn't until 1:45.  We kept each other company and got to chat, just the two of us.

So at 1:30 we get to the endoscopy center and I sign in.  They take me back shortly after and we get started on all pre-op in op that we need to do.  I change and we go over what I am supposed to have done that day.  But wait?  There is no BRAVO on the list!?  I explain that I was scheduled for it on the 28th but was called to move everything to one day (Wednesday) to make it easier on me.  She says OK I will look into this.  So right there I am a bit annoyed that things get screwed up.  I go into the bathroom one last time and when I come out there is this doctor having a hissy fit about something.  I immediately realize its ME and the BRAVO procedure.  I hadn't met the doctor doing my scopes yet, and now I am totally annoyed that she is annoyed.

The nurse comes over and gets me into a bed.  Well, my heart rate decides to sky rocket because I am so frustrated.  Resting its still in the 140s.  No one is too happy about this and all the deep breaths I take is only making it go higher.  They decide they need to do an EKG to make sure there is nothing wrong.  Great.  I try to explain that stress raises my HR and resting I am around 110-115.  EKG is fine, of course.  All I keep thinking is if they cancel this because of my HR I am not going to be happy!  They decide its OK since this is normal for me (they listened yay!).

Finally they wheel me into the room where the procedures will be done.  Everyone is great and the doctor (the one who was having the hissy fit) comes in.  I have calmed down some and she explains to me that there is NO record of my ever having been scheduled for the BRAVO in the system.  She is very nice, I should add.  She says she paged my transplant doctor, Dr G, and she said there is no need for me to have the BRAVO.  Um excuse me?  I explain to Dr L that I NEED this test for my transplant evaluation and that I am supposed to be presented in December and can not be without this test.  She said since there is no record of me being scheduled and my doctor said I don't need it, they can not do it.  Now it is entirely out of endoscopy's hands.  I am LIVID at the transplant center.  I tell Dr L I will be seeing her again soon.  Again, she was VERY nice and there is nothing they can do.  They can't just do a test on me that isn't OK'd by my doctor.

At this point they drug me up and I wake up right before they wheel me out and back into the recovery area.  All went well.  I spoke with Dr L again after and she let me know what they found.  There were 9 small polyps (all 1cm and under) in my colon that they removed.  My ultrasound showed that the cyst on my pancreas grew from 1.5cm to 2.2cm.  They were unable to get a biopsy of it due to the location.  She said they are slightly worried that it grew but that my GI doc will go over all my options in December when I meet with her.  She said they may have to operate to get it off, or biopsy or whatever.  So I have that to look forward to.  But I will get the result of the polyps in my colon when I see her as well.  Other than the growing cyst everything went well.  I was clean enough to see everything so my absurd amount of prep actually worked!

Here is the size of the polyps in my colon, the original size of the pancreatic cyst in January and the size it is now.  And a dime for reference.

So there you have it.  I sent an email to the NP at transplant clinic and I hope to hear back from here on Monday.  I told her I was not happy and they need to work on their communication up there.  Confrontations are not my style but I am sick of this run around shit.  Someone needs to figure things out and I am so furious this got fucked up.  Being presented in December might not be an option now, and I suffered for 5 days without ANY antacids for no reason.  But shit happens and hopefully they fix this.

Happy Thanksgiving everyone!!!

20cm is HUGE!

When you hear centimeters you don't think of something being large. At least I don't. So when I heard that the polyp removed from my colon was 20cm I just said oh ok. She said it was big but I never thought it was THAT big!

20cm = 7.87inches!!!!!!!

Yeah something THAT large was sitting in my colon! Luckily it was benign.....

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)

My brother is a free man!

The best news I could have gotten (besides getting my SSDI approved) was that my brother tested negative for the Cancer Gene!!!  Lynch Syndrome, hMLH1 is the mutation.

again here is the post explaining it all.

Funny, my brother sent me a text message to tell me (he is working albeit with my dad) and it said "God must have been in a bad mood when he made you cause I don't have the gene, you got the short end of the stick".

I was so happy I almost cried!  My niece and nephew and any more babies they may have are in the clear as well.

You might be thinking "aww poor Amy, she has this", but PLEASE DON'T.  I don't want pity, I don't want to  have anyone feel sorry for me.  I am glad it was all placed on me and not my brother.  A lot of Cystics feel this way about getting the disease over their siblings.  It has nothing to do with feelings that the other could not handle it, but rather that they don't have to deal with it.  I am much happier having my brother live a normal life and have me be screwed.  It's something I just can't explain.  Plus I don't think I could live with watching my brother die.  I don't know how my brother will do it, and I try not to think about that.

Is it selfish to say that I am almost thankful that I probably won't have to watch my mom, dad and brother pass?  Because if it is then I am guilty of being selfish :)

Same goes with this whole hMLH1 gene.  I am glad that I have it and have to deal with the testings for it rather than my brother, who most likely would not have had them done anyway LOL.

Let the CF end with me, and let the Lynch Syndrome end with me as well.  Granted there are 5 other siblings of my dad who have has polyps and/or cancer and that also have kids, so it might not end with me entirely.  But it's a start with me and my brother!!!!!

Cancer...it might run in the family

I am so very excited.  My brother called me today and he is going down to Penn tomorrow to get tested for the colon cancer gene.

I just know that he doesn't have it!  I was positive I had it, and it turned out I was right.  And I feel just as strongly that my brother doesn't have it.  I hope I am right again.

Please keep him in your thoughts that he doesn't have the gene and will not pass it on to his 2 children.

It scares me to think he could have it too.  But if he does, then he will know and he will be able to get tested each year like I do.  And if he doesn't, he won't have to get a colonoscopy until he is 45 or so.

To find out more about this read my blog posts:

my-colon-cancer-screening-visit

colon cancer screening results

Just another Manic Monday...

Another painful blog for my readers. I swear I will be out of this funk this week. I will make sure of it!!!!!

I did have a fabulous weekend so that can make you all smile.

This week there were 5 new babies born to 4 of my friends. Yes one set of twins. FIVE KIDS IN ONE WEEK! And all of the parents are friends of mine (well at least one of the parents is anyway). And no my brother and sister in law are not among them though I will have a niece or nephew by September 14^th if they don’t wanna come out on their own.

So for obvious reasons it kinda depressed me. I love babies and I am so stoked for all of these people. But it also reiterates that I can not have any of my own. It depresses me when I look at all the pictures of the newborns and see the happiness and glow on the new mommy and daddy’s faces. I want that. Of course that leads into my real reason for this post…

Hysterectomy. Yeah the big H word.

I have thought about this and with my family’s history of cancer (granted only colon and one uterine) I have been considering having mine removed. Added with the cervical pre-cancer cells found and I am all about avoiding Chemo and the like in any way I can.

However, this is a permanent decision. One that once done, can NOT be reversed. Sure there are plenty of positives to this…no more periods, no chance of getting pregnant on a one night stand, reduced risk of cancer. But what about the negatives. Never having a baby on my own. That’s really it. I’ll never experience pregnancy if my uterus is gone. Doesn’t matter if I will never have a baby anyway. The chance is always there. With the prime piece missing from my body I’ll never have a shot at that, no matter what.

My BFF asked me Saturday if I got it done, would I regret it. I told her I would regret it until the day I die, but there is nothing I can do about it. I can’t have kids and getting rid of it makes sure of it. It is like a security thing. This way I won’t go do anything stupid like get myself knocked up. Not that I would but hell in the heat of a passionate freak out I might get that brilliant idea. I tend to act then think so it isn’t entirely out of the question.

This is obviously something I need to think about for much longer than a few days and I plan on it. I won’t be jumping into serious surgery anytime soon. I will discuss it with both the genetic cancer people and my CF dr.

I know that I can’t/shouldn’t have kids but a part of me secretly hopes that someday I will anyway. That maybe I will get that chance to feel the baby move inside me and to look at their face after they are born and feel unconditional love for another human being. To play with their feet and hands, kiss them, change them, feed them. Its not the same when it is someone else’s child. No one can ever mimic the feeling of holding your own baby, your own flesh and blood. When I die, this will always be my biggest regret. So taking out the one piece that can give me babies scares me. It is admitting that I will never have one of my own.

I’m asking all of you to avoid the whole adoption and surrogate mother talk. It has never and will never be an option for me. The only parenting option I will go for besides my own baby inside me, is being a step-mom.

Emotional roller coaster continues...

**Warning…will be a bumpy ride, with some deep holes here and there so buckle up**

I am still on an emotional roller coaster from last Friday. It just seems to go higher and higher. At some point I will reach the peak and come flying down, my hands waving wildly, screaming at the top of my lungs.

Saturday did not end up being all that much better. I had a set back exercising. I was much more SOB and my tolerance went way down. I even had my O2 set at 3L hoping it would help me keep my O2 up and HR down. No such luck. I still dipped into the high 80s. While not all that horrible it just seemed to add to my “issues” for the weekend. Sunday I was just blah and didn’t feel up to doing much. I did get to see my FB (fuck buddy LOL) Sunday night, but I was out until 2am so I was EXHAUSTED Monday morning. But that at least brought my spirits up a bit. Then Monday shit hit the fan with he and I and we decided to just be friends for now (long story not getting into it on here). I’m due for my period which adds to the emotional-ness and this news, for some reason, threw me for a loop. I was upset, but I’m good now haha. I’ve also been stressed at work trying to get this project out which went out yesterday thankfully.

Tuesday I woke up in a better mood only to have it thrown back down after talking to the genetic counselor. She discussed the results of my Colonoscopy with me fully. Apparently they found a lot of little benign polyps which is good. Then the one large one was synonymous with Lynch Syndrome and was pre-cancerous. So that was fun news to get on Tuesday. YAY! Granted it was just PRE-cancer but it still makes the body shake. I pretty much shook for the rest of the day. They did get the whole thing thankfully, but now I know I need to go back once a year. We chatted and I told her I wanted to come back in to discuss some things and she said I could or if I wanted to do it over the phone that would be ok too. So I think I might just do that so I don’t have to pay $30 and drive to HUP. I just want to discuss the whole hysterectomy thing considering I had pre-cancerous cells on my cervix a few years back, that were removed. Like I don’t have enough fucking issues with CF.

Being in this emotional state has made me do a lot of thinking, which is NEVER a good thing with me. I keep thinking about love, and finding love and how I am not open to it. I want love. I want the kind of love where you are best friends, soul mates, meant for each other. All that gushy sappy shit you see in the movies and read in books. But the thought of letting myself find that and open myself up to that is so fucking scary it keeps me closed. It’s so hard to let those happy feelings in when all you can think about is how it will end badly and you will get hurt. Yet you don’t know that for sure. You just assume it will because every other “relationship” has failed miserably.

Then I think about all my past relationships. All the ones that failed. I see a pattern. That pattern is that I chose guys that are in the same emotional state as me…not open to love. Which of course at the time is not obvious to me and when it does become obvious I just ignore it. You can ask any of my friends and they will tell you the same thing. I fall for guys that are not available, emotionally and physically. I fell for the cop, who had a baby’s momma at home. I fell for another guy who had a girlfriend. I fell for another one who had a wife. I fell for one who thought he wanted me but couldn’t figure it out. (Fall does not mean love, fall means feelings that given time to “fester” could develop into something resembling love). I fell for another that was getting divorced and didn’t want a relationship – just sex. In each of these cases I KNEW nothing could ever come from the “relationship”, yet I pursued and conquered. And in the end, I ended up hurt.

Flip the coin around and let’s look at the men that have tried to date me that were available. There have been a few, yet none of them succeeded. I was that girl, the one that the nice guys talked to and helped with their issues, and wanted to date, but the girl never gave them the time of day about dating. Yeah that was me. I was more than happy to seek their advice about the bad guy of the week yet I couldn’t see that they would have been much better. And if they did succeed in getting me a few dates, I ended it after a couple of weeks. Kim says I like a challenge. I think I am too scared to be happy.

Sunday night my FB (fuck buddy remember) and I were discussing relationships and I remarked how I used to be such a guy when it came to these dating things. I was always the one ending it and never the one that got hurt. But that was because I had been hurt severely but the one guy I thought I was going to marry. I was 21 years old. So for 7 years, almost 8 I have had this wall that has been built up around me. Some men have started to break through the cracks but no one has penetrated it deep enough for me to remove it.

Looking back even farther, before said relationship, I was the same way. I don’t know if I was just that way because I was young and inexperienced or because I was just made that way. Sometimes I think that I am just wired wrong in the love area. I want to be able to curl up next to my man and tell him everything, yet I don’t want to put myself out there to find that man. How can I be open to love when I can’t even tell someone private things about myself. I don’t talk, I don’t give, I don’t share. I just sit there soaking up what the other says, growing feelings and then running in the end. This does not make for a strong bond.

A part of me thinks it has nothing to do with CF. And another part knows it does. I just wish I could get to the bottom of it so that I could finally someday let myself feel the happiness that so many have in love.

I shall leave you with a link to my poem. I wrote this years ago, and ironically it won a poetry award a few years back. Sometimes the best things come from broken places, when your heart is shattered, pieces scattered all over.

Will I Ever?

Going home tomorrow

Well I will be home tomorrow! I have the orders and the discharge coordinator was just in to check on me. Saweeeeeeeet!!!!!!! Its a good thing because I'm running out of yarn haha!!! I've now made a scarf, a PICC cover, a baby hat, and a matching hat for the scarf. I'm working on a shaw for my step mom for Christmas right now.

My other fabulous news is that the polyps are nothing. We caught them way a head of time! So I'm safe from the cancer bug for now!!!! My dad will be super happy! Well my mom too of course but considering its my dad that has almost no colon I think it will be a much happier thing for him.

Speaking of my dad...I enjoyed a nice long chat with him last night. He was telling me about when he had colon cancer. I was 7 weeks old and he asked the DR if he would get to see me talk and walk and go to school. The DR said he couldn't answer that. And look here it is 29 years later and my dad is going strong!

I must admit that I feel awesome! I haven't felt this great in a long while. It really does become the "norm" when you can't breath and you just deal with it. Then when its all done and over and you've been "fixed" that's when you realize just how sick your lungs were! I shall be starting my "get to 50" goal on great footings when I get home.

I'm a healthy CFer and its about dam time I start acting like it! Dancing, socializing, sex, the whole nine yards :)

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Colonoscopy etc...

Well all did not go so well on Monday. The GoLytley did not work and I was too full for them to be able to remove the polyps they found. So last night I got to drink some Miralax in Gatorade to flush me out. Now that stuff worked and it didn't taste like shit!

After 2.5 days of not eating I FINALLY got my system clear enough that they could remove the polyps they found. I was whisked away at 7:30 this morning hoping that I was not going to puke. I drank the 3 bottles of Gatorade in 3.5 hours ending at 1:30 am. I was supposed to start at 8 but we all know how shit goes in the hospital. That's why I was so surprised they came to get me so early! But hey I was back in my room by 10:30 so I can't complain

And to make the day better the resident in with the DR was CUTE!!! So of course he was looking at my bare ass and the insides ick! LOL

They did find polyps. There was a really big one in there and then some smaller ones. They have to biopsy them to make sure they are not cancerous yet. Luckily they just snip them out when they are in there looking around! The DR told me that I still have some hard stools up by my appendix and colon where they meet so they took a biopsy of that just in case. If it comes back there are polyps there then I have to get another colonoscopy in a month. If not I'm free for a year!

They were able to do the endoscopy yesterday and he said that came back clear. I have some irritation etc but that is from the coughing. My throat has been sore since yesterday but that's the only side effect I've had from both procedures so far so I'll take it.

There is a woman a few rooms over who has been screaming for days. I don't know what her issue is but they need to shove an effin sock in her dam mouth! I'm getting sick of hearing it! And its not constant just every now and then but at 1am you don't want to hear that crap come on!!!!

I've finished 2 books so far and am working on the third. This one is a bit longer so it will last me. I've also finished one Christmas present and have the yarn to start a second one. One of the RTs brought me in Twilight to watch so I'm watching that tonight! She said she hates vampires too but that this was a great movie...we will see!!!

Hugs going out to all my fellow cysters that are in lock up right now too!!!! And to all those feeling like udder shite! I love you all!!!!!!

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My Clean Out day

So far is uneventful. Oh FYI this will be a TMI post so if you are not one to read about the things that can come out of a CFers body please stop now :)

I started drinking the GoLytly around 12ish and I have used the bathroom maybe 3 times. I was expecting to be sitting in the bathroom all day long. Instead I have napped for a large majority of the time. I'm exhausted and blame the Zyrtec. I'm thankful I can sleep at night now but man I'm good for nothing during the day. But anyhow...I am somewhat crampy and hope that this will be the extent of it. After midnight tonight I can eat nothing nor have anything to drink. Of course my colonoscopy and endoscopy are not scheduled until the afternoon and there is no set time yet. Basically I will be pushed back since I'm an elective procedure. Pooh on them!

I'm kinda nervous about it. What if they do find polyps and what if those polyps have passed the cancer stage and I end up with colon cancer like many of my relatives? The body can only take so much and I don't know if I could handle chemo. Of course I'm just letting my mind run away and I'm sure if they find anything it will be minimal.

Dr H has me back on fluids through IV since my mucus is not thinning out at all. Production has decreased through out the day but I still wake up hacking out a huge glob of clayish goo.

Boredom has begun to take hold as I have finished one book, am halfway through another and halfway through my SILs Christmas present. I'm hoping my mom can bring me some more books since this one might be finished by tomorrow.

She was supposed to come down today but her boyfriends best friend was found dead in his pool this morning. He drowned. So sad. So if you could all say some prayers for his family.

That is all I have for now. My mood is slightly bleak right now and I'm still so tired. But I must get to my dinner of green jello and lemon water ice. The chicken broth is just too blah!

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In the hospital

Well most of you are well aware of this already but here are some details. And yes I have to do this from my crackberry so please forgive any spelling and punctuation :) also I apologize to my blogger friends that I can't read your blogs while in but you shall all keep me company when I am sprung!!!

My numbers were actually UP today!!! I was at 43% this morning up from 35!!!! Which is awesome but I still feel SOB and congested. So we decided a stay in here with the big boys would get me higher and keep me from dropping any lower.

So I'm in for a few days to get the meds started and to get my colonoscopy done too.

My room is fabulous!!! So big even though the view blows lol! But hey I have room for a stationary bike and a treadmill and guests :) even though I'll only get the bike and guests lol!

Well that's all from my front. I'll be sure to keep everyone posted!!!
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Clinic Appointment Yesterday

Well I will give the good news first.

My DR was very happy to see I got the results of my genetic testing, even if it means that I have the cancer gene. At least we can be proactive about it now. He apologized for not having much knowledge in the area of Lynch Syndrome (which is what this mutation is called), but said he was willing to learn with me as we go along. He also found an article that he printed out for me to read. AND he has been calling the genetics DR religiously to make sure they called me for an appointment...see he does care!!!! He asked me how I was handling the news and told me to take it piece by piece so I don't overwhelm my self.

This is one of the reasons that I adore my DR to no end. He admits he doesn't have the slightest idea what this will entail with CF but he wants to learn and he sent me to someone he trusts for help. And he suggested that if I wasn't comfortable with them to go to someone else I may feel better with. But given that he knows these people and trusts them I am prepared to work with them. Also, that he was following up with these people to make sure they saw me and found articles related to this is awesome! See I love Dr H!!!!!!! :)

My weight is the same, at 118lbs so that too is good. My blood pressure was low for me. And he doesn't think that my occasional stints in the low blood sugar range are anything to worry about as of yet. He said to just be careful of what I am eating and I seem to know what to do to get the shaky, dizzy feeling to subside.

Now to the bad news...

I am avoiding the hospital by the skin of my teeth. If it wasn't for the GRE test this weekend and my SIL's shower next weekend I would have gone in. But I want to be out for both so he is calling in Colistin for me to try. I have to call him next week and let him know how I feel. Then 2 weeks from today I am going back in to see him. If there isn't a marked improvement I am being admitted. I'm down to 35% and 1.1L. Though not horrible and only down a little from my base line, I still need to catch it now. Plus getting SOB easily and being so congested is not good either. When I wake up in the mornings I can breathe out and mucus will practically fall out of my mouth - so sexy I know. Good news is if I do go in at least I can have the colonoscopy and endoscopy done while in. Kill two birds with one stone haha! I've never had a dramatic improvement from any inhaled abx (except inhaled cipro - which jumped me up then dropped me back down before the study was over), so I am not expecting to be all better from it. We will see, maybe it will work wonders for me.

So that's my news for the day. I shall keep everyone abreast of what happens I promise!!!

Colon Cancer Gene Results

Well I got the results of the cancer screening test back and I am positive for the hMLH1 gene. If you are not sure what I am talking about read this post and stay up to date will ya???!!?!?!? :)

I knew I would be positive, but it is still a shock. It is one thing to think you may have it and another to test positive for it. So now I will start getting colonoscopies and endoscopies done every two years starting as soon as possible. Luckily I see Dr H on Wednesday so he and I can discuss this and he can talk to the gastro team about me going under for both. And I also need to make an appointment with them to discuss our game plan. When she called me she said she got the results back on Friday but didn’t want to ruin my weekend, even though she knew I would take it in stride…which I did. I even laughed and said that I knew it was going to be positive. Besides, I got the results in less than two weeks…that is NEVER a good sign LOL.

Calling my dad and brother are first on the list though. I have to let my dad know the results and try again to convince my brother to have the test done. I am almost positive he will be negative. I seem to take after my dad’s side so much more than my brother does. He takes after my mom’s side more than I do. So hopefully he is like her in that respect. I would prefer me to have the gene instead of him, seeing as how I already have one set of less than ideal mutations…does this make me a double mutant…or triple? My dad was funny when I talked with him, apologizing for giving me crappy genes. So not his fault at all. I would never blame him or my mom for anything genetic I ever have. I know they didn’t ask Mother Nature to give me certain genes, and if they did they should market it and be rich!

Even though I was expecting this result I am still a bit shaken up. My hands have been shaking since I found out and my gut is all knotted. I feel like I want to cry and I thought for sure I would when I called my dad. I tried to forget about it while listening to some Preston and Steve podcasts but it wasn’t helping. I couldn’t seem to concentrate on my work that desperately needs to go out on Wednesday (or for me Tuesday since I am out Wednesday). I will be taking a lot of Melatonin tonight so I can sleep!

At least I know I will never pass this on to any of my children since I won’t be having any. I guess I really did get the shitty genes in the family. I know there are many positives to knowing I have the gene, like early detection, but it doesn’t lessen the blow. It is safe to say that I was not as prepared for the positive results as I had thought I was…And yes I know this is just saying I have the gene and not cancer but it makes me wonder then if being hard-headed and stubborn has allowed any polyps to grow inside of me. Which is why I need the tests done ASAP.

On a MUCH happier note….look how pretty the Victorian Lance Inn is, I may have to take a day trip to Cape May just to stay in this inn!

My colon cancer screening visit

I am a few days late on blogging this but I wanted to make it very informative for you all. I had my genetic counseling on Tuesday to find out about the colon cancer gene in my family. Luckily my Aunt was tested for the gene and it was found so they know what to look for. Because of this I should have my results back in 3-4 weeks instead of 5-6. You can see this post for my family history of colon cancer.

The gene itself is actually called HNPCC or Hereditary Nonpolyposis Colorectal Cancer. All my information will be from the print out I received at my visit which is here. It affects primarily the colon and anus but can also cause cancer in the uterus, ovaries, stomach, urinary tract, small bowel and bile ducts. Basically the GI portion of your body and it is also called Lynch syndrome or cancer family syndrome. In my family, like I have stated before, it affects mainly the colon, which the genetic counselor said is VERY rare. They usually see an array of cancers of the GI areas in families with the gene. I told her we are a special family.

There are 4 known mutations of the gene. They are hMSH2, hMLH1 (which is the one my family has), hPMSI and hPMS2. Since the gene is a dominant gene it does not require 2 genes to be passed on to offspring, as is the case with CF. So obviously my dad has the gene (given he had cancer at the youngest age out of his 8 siblings) and there is a 50% chance that he passed it on to my brother and I. If my brother has the gene, he has a 50% chance of passing it on to James and the new baby. My brother has no desire to get tested as of yet, and refuses to get colonoscopies. Consequently, I am hoping I have the gene so that he will get tested (the genetics team thinks I’m crazy LOL).

A lot of what they told me did not bother me at all. I am used to hearing “bad” things from having CF. They acknowledged that too and said that I was very calm and didn’t seem phased by anything. But really I have known about the possibility of colon cancer my whole life so I have been able to deal with it. It’s not like I just had a colonoscopy and was told I have cancer. I am just getting tested to see if I need said colonoscopies. They offer counseling and support groups for those with the gene and also for those who are waiting for the results. I am not anxious at all, and will most likely forget about it until my CF dr appointment in 2 weeks and then again until I get the phone call with the results. I am lucky enough that they offered to just call me with the results instead of making me come down for another appointment. I just had to give my consent which I was more than willing to do.

This quote from the print out will help calm anyone out there that is thinking OMG my great grand daddy had colon cancer and that was it in my family! “Persons at risk for HNPCC usually have a family history of two successive generations of colon cancer or at least once generation with cancer and one with polyps”. So if only one person in your family has had colon cancer and no one had has polyps, chances are slim you have the gene. NOT saying you DON’T, just saying chances are slim. And remember I am NOT a genetics counselor nor am I a doctor!

It was mentioned that when females are found to have the gene, they think about having hysterectomies to remove the risk. They said only with females in menopause and that have had children. I asked about the possibility of having mine removed if I have the gene since I will definitely not be having babies and they told me we would talk about it after the results come in. If I do have the gene they will schedule a colonoscopy and upper GI scan to see if I have any polyps.

That was it and I am glad I finally had it done. I am going to talk to my brother more about him getting the testing since it is a lot easier than a colonoscopy. If he doesn’t have the gene then he doesn’t need to be poked and prodded in the buttocks region. But if he does, it will be good to know for James’ benefit and the new baby’s.