There's only so much you can control

Well here I sit again...in the hospital. It's an odd thing being in again. It's somewhat like the movie Groundhog Day. I come home get settled back into a routine and then whamo it's time to check in again. Yes maybe I'm being a bit melodramatic. But I've had five hospitalizations since the end of October. When you start hitting those numbers things just get a little surreal. Life has been such a blur that I even forgot one of the stays. I was thinking "oh this is just my fourth time in" but my mom reminded me of an overnighter and then it was "d'oh" headslap time.  I keep asking the hospital registrar for frequent flier miles but no such luck yet. I'm guessing I'd be platinum elite concierge level by now if they had them.

My past stays were due to cancer complications, surgery, pancreatitis. This time my lungs finally got pissed about being ignored for so long. It all started with night sweats which lead to fever spikes and then pain every time I inhaled. My lungs felt tight, gunky and generally pissed off at me.  I had the choice to try IV meds and steroids at home. But after talking to Randy & my mom decided it was time to "go big" and get admitted.

So today is day six of my stay and things are going very well. I get respiratory percussion treatments four times a day. My lungs are getting really cleaned out. I'm also on some really high powered antibiotics and some steroids. The steroids make me feel a bit manic in that I'm not sleeping well and have lots of crazy energy. Can you say lots of to do lists? It seems there are to do lists & projects all over this room right now. And of course I've only done some because I think of new to dos as fast as I do them (if not faster).

The antibiotics are my biggest cause for concern right now. Yes they are working. However, I'm running out of antibiotics that can effectively fight the bugs (psuedomonas aeriginosa "PA") in my lungs. PA is a very smart germ. Once it has encountered a new antibiotic it learns how to defend itself from future attacks by changing its structure. So as time goes on an antibiotic can become less effective against it and then basically is of no good at all. This is called resistance. Right not I have a strain of PA that is resistant to almost every antibiotic except one or so. This means a few things: 1) eventually this PA could grow out of control and damage my lungs beyond repair, 2) if I am transplanted there is somewhat of a risk of having this PA strain in my sinuses or trachea and transferring it to the new lungs. Either possibility is scary and not good. This realization hit really hard one night after talking to my infectious disease doc. I cried and struggled to come to terms with my own possible mortality.

So much has happened lately and the possibility of getting transplanted down the road has always been a hopeful goal to focus on. If the bad bugs exclude me from that it would be a hard thing to cope with. After a night of talks with Randy, my mom, and friends I felt much better the next day. What I've come to realize is that I'm doing everything possible to stay well and still enjoy life. If transplant happens it happens. If not I'll be prepared for that too. Either way I'm doing all I can and the rest (including this nasty PA bug) is beyond my control and I'm trying to find peace in that. Of course I'm not perfect and yes crying is allowed and frankly an honest expression of it all.

Of course it's not all gloom and doom dear reader. If you know me you know I can try to find a bright side on a dark rock in a dark cave in the pitch black night. Lately I've been in the cave too long but I'm emerging stronger than ever. So here's the upside:

• The PA in my lungs is a small population. So for now it may not be an issue for transplant purposes.
• Considering all the setbacks my body has taken related to the cancer "cure" it's amazing how well the lungs have held up. I mean this is the first time I've done IV antibiotics since December 2009. Thank you lungs!!!
• Duke, where I was evaluated for transplant in August, specializes in transplanting Cystic Fibrosis patients that have drug resistant organisms. They have a policy that I need to be cancer free for two years before transplant. Due to my radical cancer surgery and clean nodes I'm hoping an exception might be made if I need a transplant sooner than that. My local oncologist feels my treatment cured the cancer and no waiting period is necessary.  I plan to touch base with Duke soon to find out their current assessment of my situation.
• This wake up call is prompting Randy & I to evaluate doing some things that we've been wanting to do now. Why wait?

Thanks for listening. There's only so much I can control and the rest will be alright :)

P.S. Right now I'm hoping to get out of here by this Friday Feb 11 or Saturday Feb 12.

A pancreas and a pig

First let me start by saying we made it on our annual music cruise!!! It was a MUCH needed voyage for both Randy & I. Since my cancer diagnosis in August our lives have seemed a constant stream of tests, illnesses, treatments, and hospitalizations. I’ve been worn out physically & mentally but so has Randy. When I’m sick he not only carries his usual load of housework, cooking, cleaning etc but he also tends to my needs. In addition he runs his own business from home designing printed circuit boards www.pcbdesignpro.com (shameless plug). Even though he’s “healthy” all of it takes a toll on him too. I realized how much he needed the trip when he woke up teary eyed the first morning at home and proclaimed “I’m just so happy”. Clearly the trip was just what he needed.

Since I’m allergic to morphine & dilaudid, fentanyl is my go to drug if IV pain meds are needed. Unfortunately the drug has a short half life. So I would get a shot from the nurse; it would wear off in 25 minutues, and I’d spend the next 35 minutes in pain waiting for the next shot. This went on all night with no sleep for my mom or I. Thankfully I got a pain pump the next morning which helped tremendously. The upside to pain meds is they ease the pain. The downside is they slow your GI system.


My lab results showed elevated amylase and lipase levels which indicate pancreatitis. Pancreatitis is an inflammation of the pancreas that is extremely painful. It is more common in people with CF. I’ve only had it one other time when I was around 19 or so. The treatment involves restricting food & liquids, inserting a naso-gastric (NG) tube down your nose to your stomach to drain off bile and fluids that accumulate, and pain meds. During this bout I went almost seven days without liquids and food. At first that was “easy”. My belly was so distended I didn’t feel anything else could possibly go in. Even though the NG tube was somewhat gagging it helped me to keep from vomiting constantly. Of course I looked and felt like an elephant with it in.


Speaking of animals where does the pig fit in? Of course I’d have to fit a pig into this adventure. This pig is a pillow pet given to me by my college friends Jennifer, Julia, and Amy. It helped support me during coughing post surgery and also is a great snuggle pal. So everytime things get bad I have him to snuggle with and help ease the pain or just relax. Of course my boston terriers Rocky & Rosie usually get that job. But until hospitals allow dogs overnight the pig will do just fine.


After the first few days I was able to wean off the pain meds. My bowels had shut down and I needed to start pooping and moving stuff through. The other way to get things started was to get moving. So I walked. And I walked. And I walked some more. At first the walks were slow and short using my IV pole as a walker of sorts. As things progressed my speed picked up. The hard work paid off. The fluid in my belly shifted to my legs and ankles then eventually out as my amount of urine picked up. I got so excited about having fluid coming out finally!!! Then my bowels woke up too. One of my favorite yogis Bryan Kest said that walking is the best exercise you can do. Clearly in this case it did the trick.


Once things had settled down I got cleared for having a limited clear liquid dinner. To be honest this was a bit torturous. “Limited” meant I could only have 30ml of liquid an hour. That is about the size of a small shot glass. So I ordered jello got to eat two bites and then stare at it for the next hour until it was time for two more bites. ARGH!!! Luckily the next day liquids were unrestricted and then I was advanced to a full diet.


After eleven days in the hospital I finally returned home. I’m about ten pounds too thin and pretty weak. But lots of Ensures and Randy’s good cooking should help. And I’ve been walking some too ;)


Peace,
Steph


P.S. Once again I’d like to thank Randy, my mom Robin, Uncle John, Aunt Mickie, Courtney, Heather, Jen, and Neelu for visiting and making sure someone was there 24/7 for the majority of my stay. Thanks to many others for texts, emails, calls etc. Your support helps me keep on keeping on.Just two short mornings later we were having a leisurely breakfast. Randy started cutting up a grapefruit for us. By the time he was done I was starting to have terrible abdominal pain and vomiting. Hours later we were in my surgeon’s office for a scheduled follow up visit. I figured I’d rather go to the appointment and have him help than suffer the long wait and insanity of the ER. An abdominal x-ray was ordered and in the meantime I took two percocets. When the drugs barely made a dent in the pain I returned to the doctor’s office. A while later a hospital room was ready for me.