Three Little Pigs

Yes it's been quite a while since my last post. Part of the delay is due to me mentally needing to distance myself from all that has happened. The other part of the delay is due to a need to get my life back in order after everything.

Here's a brief summary of what's happened since August of 2010:

August: Went to Duke University for a lung transplant evaluation which consists of almost a weeks worth of rigorous testing. After this testing I also elected to have a colonoscopy to investigate rectal bleeding. The result was a diagnosis of rectal cancer.

September: Began radiation & chemotherapy to treat cancer.

October: Hospitalized for a painful bowel obstruction (three days) and low potassium (one day). Began inhaled antibiotics to treat a respiratory infection.

November: Surgery performed to remove rectum and create permanent colostomy (ten days of hospitalization.

December: Began inhaled antibiotics to treat a respiratory infection.

January: Hospitalized for pancreatitis/bowel obstruction (11 days).

February: Hospitalized for respiratory infection (10 days).

April/May: Hospitalized for bowel obstruction, emergency surgery to remove nine inchese of small bowel, and post surgical respiratory infection (32 days).

Yes the last hospitalization was a doozy. Not only was it long, it was also painful and at times frightening. I was about ready to be discharged (after two weeks) when I started to feel very short of breath. The cause was a pneumonia and I had to have assisted ventilation via a BiPap machine. This was my first time ever having a machine help me breathe. At the time I was very thankful for the help of it. In retrospect I'm still thankful but I also recognize this is another indication that my disease progression is getting more serious. Hey at least I wasn't on a vent though.

After discharge I was very weak and tired both mentally & physically. Not only was I in the hospital for 32 days, it was my sixth hospitalization in seven months. Rebounding after all that was not easy. To be honest there were many mornings I woke up thinking "How am I going to get through the day?". Then one day I received a little glass flying pig named Penelope (thanks Amy!). This particular Penelope was the third I'd received since October. Obviously people know I have a fondness for flying pigs ;) Penelope the Piggie comes with the following message: With her head-strong determination and good fortune, Penelope is the perfect depiction of overcoming impossible odds! Her personal wager against anyone using the phrase "When pigs fly!" has brought much abundance and prosperity indeed.

Penelope had been trying to get my attention but maybe it took a third one "landing" to really sink in. I just needed her to remind me that I am "head-strong and determined", have "good fortune" and most certainly have been "overcoming impossible odds". From then on I got up every morning trying to think of Penelope and trying to get my life back.

So began a serious effort to workout, gain weight, work on projects to improve the neglected house/yard, see friends, etc etc. Once again I feel like myself again. Yes there are times it's still difficult. I still wonder when the next illness/hospitalization will come. Hopefully I can always remember to think of Penelope when the difficult times do come. All three Penelopes are on my mantle in case I need a reminder. Thanks Penelopes!!!

P.S. Please attend Festiv-ale a Celebration of Beer Tasting. The event is Saturday August 20th and benefits the CF Foundation. If you can't attend please consider making a donation. More information can be found here: http://indiana.cff.org/festivale

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.

SOAR ON PINK PIGG! :-)

The following is a guest blog by my soul sister and bestest friend Kim (on the right below). Her presence this last week has been a bright light in a grey post recovery winter. And yes things are getting brighter all the time. Here's to a sunny 2011. I love you Kim!

Visits with Stephanie have been a highlight of my "back home again in Indiana" holiday adventures for the fourteen years since I left Indiana and headed west to live in the San Francisco area, but this year was extra special given the valiant fight she's been waging against cancer for the past four months. While I love living on the left coast, it also can be hard being away from family and friends when I wish I could be there for them physically, so I cherished my time with Steph and Randy more than ever this year.

Stephanie's determination, strength, and positive attitude around her Cystic Fibrosis have always been a huge source of inspiration for me, but as I snuggled up with her on her couch this week and we talked about all that she's been through the past several months, her spirit touched me more deeply than ever. So much so that I offered to write this guest blog for her, so I could help take an item off of her to do list...and also so I could attempt to give words to my undying love and respect for her.

Not only was Steph's surgery a success.. (She's now cancer free!)... She's going to be boarding a cruise ship this coming Monday for she and Randy's annual Jam Cruise adventure. Just four short weeks after major surgery and our energizer piggy is fully embracing life as she flies off on another adventure. Amazing!

When I asked Stephanie if there's anything that she wanted me to share in this blog post, she asked me to let those of you who have been reaching out to her via comments on this blog and through her Facebook page, etc. that your support and energy mean a great deal to her. The support and love she's been receiving from her extended community are a huge piece in her ongoing healing process. Even though she isn't able to respond to each of us individually, she reads and appreciates everything that is sent to her, so keep em' coming.

She also shared that her bout with cancer has been way harder than she ever imagined that it would be. She said that for the first time that she can remember she feels like she lost touch with the strong, can-do part of herself that has always been her driving force through her various health challenges. While she's gotten to know the trials that come with CF intimately over her lifetime, cancer presented a whole new set of challenges that threw her for somewhat of a loop.

I definitely understand why Stephanie feels that way given all that she's been through. But I was sure to remind her that even if she she couldn't access those inner resources as easily as usual, that they were definitely right there with her. She's been completely off pain medication for well over a week now. She's adapted to the reality of her new colostomy bag in no time flat. She's regularly walking a mile on her treadmill to help keep her lungs working at their best capacity, and she's preparing to go on a cruise right on the heels of major surgery. If that's not inner strength I don't know what is! :-)


Thankfully, Stephanie's hasn't experienced any infections or complications from her CF throughout her cancer ordeal, which is a huge blessing. While I was there, she started feeling some tightness in her right lung and immediately started an antibiotic regiment with the hope that she could nip in the bud before the cruise adventures. When I last checked in with her, she said that is was feeling noticeably better.


Sounds to me like she's well on her way to some much needed and well deserved fun in the sun. So please join me in wishing bon voyage to Stephanie and Randy...and keep sending them your positive energy and prayers!


Soar on Pink Piggy! :-) You inspire me always and I love you with all of my heart!

The BIG Surgery

Is it Tuesday yet? I'm SO ready to be done with my last cancer to do. This cancer treatment process is a constant cycle of destruction and rebuilding. This Tuesday's surgery will be the last destruction of my body when they remove the tumor. I'm ready to get on the other side of that and start the long process of rebuilding my body without (hopefully) any further steps backwards.

Last week I learned that this will indeed be the BIG surgery resulting in a permanent colostomy. My surgeon called and gave me the news. After such a good ultrasound and having my hopes high I was crushed. It was like having the wind knocked out of me. I tried to be strong and not be upset. But then I just started crying. And it was much needed. My body & mind have endured months of chemo/rad and related traumas.

The sole purpose of doing chemo/rad before surgery was to try to avoid colostomy. Otherwise I would have just had the "BIG" surgery right away. "So if my ultrasound results were so great WHY not try the lesser surgery???" screamed my head. After crying a while my heart told me a different story. The doctors are doing what's in my best interest.  If I have a lesser surgery now I may not have a colostomy but would have a higher chance of the cancer recurring. Having the BIG surgery is the best way to avoid recurrence.

If I were a healthy 41 year old the situation might be different. Recurrence could be managed with another round of treatment etc. But lets face it. I'm not healthy. Just months ago I went to Duke to see if I'm a lung transplant candidate. Recurrence in months or a few years would not be a good thing. Would I be healthy enough at that point to fight cancer again? Also, any recurrence pushes the possibility of transplant further out. Duke requires that you be cancer free for two years to be a candidate. That means in December 2012 I'll be eligible for transplant again. My lungs can probably make it that long but any longer is questionable.

How horrible would I feel if I avoided colostomy but had recurrence and then didn't make it to transplant? The statement "vanity kills" rings true. I'd much rather have a colostomy and have a better shot at making it to transplant. My docs have this ultimate goal in mind even though I'd like for them to let me take the easy way out and do the lesser surgery.

The last few days I've moved through a wide variety of emotions. Anger, disbelief, dread, fear, resignation, acceptance, etc has been my progression. Today I feel up to the challenge and strong enough to get through it. Positivity is back in play :). It's been a long and winding road but I can almost see the end.

Cancer catch-up post

Yes it's been a long time since I've posted. Partially this is due to me being a procrastinator. However, on a deeper level I've been avoiding a public revisiting of some of the trauma I've been through these last few months. It's been a lot to wrap my head around and my head has needed to heal as much as my body.

Let me start out by reiterating that "cancer is not for pussies". Even if everything goes as planned (not all went as planned for me) I'd imagine it would still be difficult. The reality is of being diagnosed is IMMEDIATELY followed by a need to get rid of the disease as quickly and thoroughly as possible. This involves taking a toll on your otherwise "healthy" body. Of course in my case having CF makes this infinitely more risky.


STOPPED UP

The first few weeks of chemo & radiation "chemorad" were a walk in the park. I did start having some cramping diarrhea during week two. This is where things started to get a bit hairy. Before going any further, let me preface my discussion by saying this is not an attempt to lay blame for what happened. Rather it is a way of explaining and somehow coping with a rough situation.

In the third week both the oncology and radiation departments put me on various drugs to help with the diarrhea. I really didn't think much about it except being happy not to be having the runs anymore. This happiness mixed with a genuine lack of experience with chemorad side effects caused me to not be concerned that I wasn't pooping enough. I also somehow incorrectly assumed that both departments knew what the other was prescribing or that I had let them know at some point. By the end of week four I was really feeling crappy & having pain so chemo was discontinued. Radiation was also stopped for a day. An x-ray was taken of my abdomen at that point to rule out any issues. No one followed up with me to mention any concerns about it. So to deal with the pain I started on pain meds as needed.

Pain meds also slow down your GI system. Even though I'm VERY pain tolerant my need for pain meds increased steadily during week five. My poop decreased to almost nothing. The fifth weekend was a rollercoaster of trying to poop and using every intervention possible to get it done. Enemas, laxatives, etc etc. After another day I went cold turkey on the pain meds hoping to help the situation. By Tuesday morning (week 6) I was pooping blood clots and my belly was so distended I looked pregnant.

My oncologist admitted me to the hospital and more laxatives etc were tried. A second abdominal x-ray was taken. After a day with no results I asked to be put back on pain meds. At that point I'd lost the ability to mentally deal with the pain anymore. I was told my x-ray showed impaction of feces causing a blockage. My transplant physician visited and pulled up my x-rays on screen. I then learned that I'd had marked constipation starting way back with my x-ray taken in week four. My more recent x-ray showed not one but two blockages (high & low with a massive amount of gas inbetween). Unbeknownst to me I had been getting more & more "full of shit" for a long time. In hindsight I think this was caused by overmedication and my lack of experience with the side effects. I know CF so well and am very in tune with my body relative to that disease. Cancer is a different story.

Early the third morning of my stay I lay in bed not able to sleep. Then I remembered my yoga!!! In bed I started doing some gentle pelvic rotations to try to loosen things up. And IT WORKED sort of. A while later a long and way overdue fart passed. WOO HOO! Later that morning my mom was drinking coffee. I asked for a several sips remembering that coffee always makes me want to poop. A few hours later it finally happened....I POOPED!!!! Once things started it kept literally flowing for a few days. I've never been so happy to poop. The next day I was discharged.

BE CAREFUL WHAT YOU WISH FOR

By the weekend things slowed down to more normal. Of course then I overanalyzed every poop or lack thereof. Next Monday the radiation doctor told me to take several laxatives daily to keep things moving. I was happy to oblige as a way to avoid being impacted again. But sometimes good intentions produce bad results. After a blood draw that Thursday my potassium levels came back dangerously low. Once again back to the hospital :( Having really low potassium can make your heart act irregularly or just plain stop. So they monitored it overnight and administered IV potassium. The following day blood work was OK and it was back home again.

A week later radiation finally ended. My new mission was to get strong and get fat. Due to all the issues I lost ten pounds that I didn't need to lose in the first place.

REWARD FOR ALL THE HARD WORK

This Wednesday was my follow-up rectal ultrasound. The purpose was to see how much the tumor had shrunk after the chemorad in preparation for surgery. It was a real gift to hear the results. Not only did my tumor shrink; it was no longer a detectable mass on the ultrasound. The visual view via scope only showed a 1.5cm ulcerated flat area but no tumor. Such AMAZING news after such a harrowing experience.

Now my focus is continue eating & exercising until surgery. Based on the ultrasound results I'm very hopeful that a colostomy will not be needed. Until then it feels like a huge weight has been lifted from me. And for that I'm so so grateful.

I'd like to close by thanking all of you for all the support, prayers, visits, calls, care packages etc. I'm so grateful to have an abundance of wonderful people in my life. Life is good :)

Love,
Steph

Port o' call

Well friends it's official. After consultation with various docs (pulmonary, oncology, infectious disease, surgical), I made the decision to go ahead with chemo/radiation and then surgery instead of just surgery alone. The benefit of trying chemo/radation first is that it might shrink the tumor enough to avoid having a permanent colostomy bag (crosses fingers). The other upside is that it could mean a less invasive surgical procedure. Right now it's probably a 50/50 shot. Confused about why I'm doing chemo? Please see my last blog post.

The downside with the chemo/rad approach is side effects. 5-FU is the chemo drug I'll be getting starting Monday. The oncology team said it's one of the mildest chemos. Nausea, diarrhea, mouth sores, and fatigue are common; hair thinning is less common. Also, it will lower my red & white blood cell counts. Since red blood cells carry oxygen throughout the body this could be a tough one for me and my whimpy lungs. Thankfully I've got oxygen available right now if I need it. The white blood cells help fight infection. This is the biggest issue for me since my lungs always harbor some degree of infection. I've discussed this with my infectious disease doc. We've agreed to monitor things closely and put me on inhaled Tobramycin at the first signs of increased cough. Thankfully I've got a great team of docs and we will all be monitoring things VERY closely.

Since chemotherapy is hard on the veins, a port-a-cath is often used to infuse the meds. A "port" is a reservoir that sits just below the surface of the skin. The reservoir is a little wider than a quarter and about 1/3 inch tall. It has a silicone top. A flexible plastic catheter runs from the reservoir to a large vein leading to the right atrium of the heart. During infusions a right angle needle is stuck into the skin above the port and then through the silicone top. No need to worry about pain as a numbing cream can be used for that...WHEW. The great part is that the port is totally enclosed in the body. Swimming, baths, etc are all no problem. I just got my port put in yesterday. So far post op pain has been well managed by a low dose of Vicodin. Dr. Nigh did a great job placing it. It's on the upper left side of my torso. I chose this spot based on where it would look best when wearing a tank top, bikini etc. Also wanted to keep my left breast free of having an "extra nipple". I can just barely access it with both hands. Right hand is easy; left hand is doable but not easy. Below are photos of placement & incisions. Note that the blue marks are my own artwork. They mark where a bikini strap falls. Thank you Sharpie! The incision area is bruised and yucky since I just had surgery. I'll try to take another prettier picture once things heal more.

Will update everyone again when chemo/rad starts Monday.

Peace,
Steph