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

C is for Cancer

C is for colonoscopy. Several months ago I started noticing blood when I pooped. OK lets get this out there right now. You're going to be hearing a lot about poop etc due to the nature of this post. You've been forewarned. Anyway I've been kinda ignoring said blood thinking it was internal hemorrhoids. Before my transplant workup at Duke I was given a list of pre-testing they wanted completed. On that list was a colonoscopy but only if you are over age 50. So I inquired thinking that bleeding hemorrhoids would not be good post transplant. We decided to wait until after the workup was over and then possibly address. When I returned from Duke my symptoms got even worse and I started passing blood even when passing gas. That little voice inside me said "It's time to do something; farting blood is just NOT cool." So after a few calls I was scheduled for my first ever colonoscopy last Tuesday August 24th.

The procedure itself is not a big deal. You're under twilight sedation for it. This means you may still be awake but sedated and will not remember most of the procedure because of a drug called Versed. The worst part is preparing for the procedure. At 8am the day before you are restricted to a clear liquid diet. That afternoon you take laxative pills. Then you drink this funky stuff called GoLytely. Its a mixture of sodium chloride, potassium, and sodium bicarbonate that tastes a little like oyster juice. For all the horror stories I heard about the taste it wasn't that horrible if chilled. Of course I also like oysters on the half shell so maybe I'm the weird one. About an hour after drinking it the fun begins. Imagine having the worst diarrhea you've ever had. That was the rest of my evening and even off and on during the middle of the night. The upside is that it REALLY cleans out your system.

 C is for curveball. After the procedure the doctor came in to tell us his findings. That's when both Randy & I got hit with the curveball. He found a mass in my rectum that had a greater than 50% chance of being cancerous. WTF!!!!!! We were both expecting to hear you have internal hemorrhoids, take this med, blah blah blah. BUT CANCER???? REALLY????


I rember the feeling of having the blood drain from my face in shock. Not only did the cancer possibility scare me. I instantly realized the potential to have this screw up the possibility of getting transplanted. So did the doctor. Before the procedure we had been chatting about the center here in Indy (Clarian) and me being out of network etc. We happened to discuss their exclusion criteria related to cancer. He told me that Clarian requires you be cancer free for five years before they will consider you for tranplant. Most centers have some exclusion criteria for cancers. The reason being that after transplant you are immuno-suppressed. If there were to be active cancer cells then the cancer would run wild. Thinking through all this I became more afraid of not surviving till I was clean than of beating the cancer. On the way home I left a voicemail for my pre-transplant coordinator at Duke to inquire about their policy.




C is for CF friends. Whenever I have a medical issue lately I reach out to my friends in the CF community. There are several web forums that serve as virtual support groups for us. So my first web task was to post about the potential cancer and look for others with the same issue. I did find some old posts with people having pre-cancerous polyps removed. Amy shared her story about Lynch Syndrome which is an inherited very specific form of colorectal cancer. Like many of the CFers out there she graciously offered to share any information or answer any questions I might have. That's how wonderful our little community is. Thanks Amy!



C is for carcinoma. Well adenocarcinoma is the actual term for a maligancy in the colorectal area. But hey I'm trying to stick with the "C" theme. My next web task was to become an educated patient. I like to go into my medical appointments knowing as much as possible. That way I'm ready to have a dialouge with the physician instead of just sitting there being the recipient of info. As part of this preparation I also come up with a list of detailed questions for the doctor. Doing this prep really helps me have some sense of control over any disease process. Researching was also a way to distract myself until my next scheduled appointment on Thursday.



C is for crying. Randy, my mom & I all went to the surgeon appointment on Thursday. As usual we were hopeful for the best but prepared for the worst. Dr. Nigh gave us the bad news. The tumor is malignant. Of course controlled crying quickly followed. He explained that the tumor is about 3-4 centimeters in width and is close to my anus (see I told you it was going to be lots of butt talk etc). The next step would be to stage the cancer by taking a CT scan and doing an ultrasound. The CT scan will show if it's spread to any other organs. The ultrasound will show the exact size and location and if there is spread to the local lymph nodes. Depending on what these tests show there are two different possible next steps. One would be to do surgery right away. The other is to do pre-operative concurrent radiation & chemotherapy and then do surgery. Because of the proximity to my anus and involvement in the sphincter muscle, Dr. Nigh thought it likely the anus and entire rectum will need to be removed. The bad news is this would mean having a permanent colostomy. It would also most likely involved a full incision abdominal surgery. I've had two previous due to endometriois and a hysterectomy. Abdominal surgery is not an easy recovery (4-6 weeks). Dr. Nigh was involved in one of my prior surgeries so at least he already knows his way around ;) He's also a very nice guy and a skilled surgeon.

Once outside in the parking lot the sobbing began. I'm pretty tough but not at all prepared for a possible mortality from something other than CF. Dying young I'm kind of at peace with. But I REALLY want so much to have at least a few years of breathing easy with tranplanted lungs before I go.


C is for caring. To any medical drama there is always at least one upside. Once again I've had an onslaught of calls, emails, prayers, warm thoughts, etc from family & friends far & wide. There are so many people praying for me if the God of my understanding doesn't hear he never will. It really makes it easier having so much support. Everytime I realize how grateful this makes me then the worrisome thoughts just melt away. Keeping an attitude of gratitude is my new mantra lately (thanks Nikki & Marsha). My friend Kim will put an offering in the temple at Burningman for me too. How cool. Thanks to all for such great support!

We spent the weekend with Randy's family at a lake house in Wisconsin. What a great way to pass the time. Water cruising during the day and canasta at night were awesome.


C is for colostomy. After we returned Sunday I needed to pass the time. So I set forth to research living with a colostomy. Granted I'd rather not do it. But if it means living with a colostomy or not at all I'll take the first option every time. Modern advances in bags, patches etc make it not too horrible. If you use an irrigation method I could just wear a small patch over the hole for 24-48 hours without need for a bag. A friend said this could be a definite bonus at music festivals. The port-o-lets there are often a mess and brutally hot. No need for long stays in one anymore...yippee! My friends Leah & Nicholas have offered to glitter up the patches to make them "pretty". Fashion colostomy patches...nice!!! Sounds like a great cottage industry to me. So bring on the glitter patch/bags if it needs to be so.


C is for compassionate care. My first meeting with Dr. Bhatia went great. It was on Monday. He is VERY positive about curing this cancer. He had records of my CEA levels (a blood test that measures cancer antigens) but no other test results yet. Based on this he formulated a preliminary gameplan. We will do combination radiation/chemotherapy for six weeks. Then take four weeks off for my body to rest. After that Dr. Nigh will do surgery to remove the tumor. The rationale for doing radiation/chemo before surgery is to shrink the tumor. A smaller tumor means a less invasive surgery. It also means that I might be able to avoid a colostomy bag. Dr. Bhatia said he will do everything possible to avoid a colostomy. I love that he gets lifestyle issues.

Another good sign is one of his patients. He is currently following another CF female with colorectal cancer. She is post-transplant and is doing great. Sounds like a good sign that things will be OK with Dr. Bhatia. Not only is he positive, he has also done lots of reading about CF and cancer.


C is for celebration. Tuesday was my last diagnostic test an Endoscopic Ultrasound. Done under twilight sedation, it measures the size and location of the tumor. It also shows if cancer has spread to the local lymph nodes. We got AWESOME news. NO LYMPH NODE SPREAD. WHAT A RELIEF! To celebrate we went to our favorite sushi place Ocean World. I can describe the elation we both felt. What a rollercoaster ride. I've still got to follow up with Dr. Bhatia but a least I have better info. He will to and my treatment plan may or may not change.

C is for curable.  So my next step was a follow-up appointment with my oncologist yesterday. Even more good news. The tumor is a Stage 1 tumor and not a Stage 2 like I previously thought. Hey I was good with a Stage 2 but Stage 1 is even better. For stage 1 tumors chemoradiation is not usually used. However, in my case it may shrink the tumor enough to possibly avoid having a colostomy bag. But Dr. Bhatia seems to think even with chemoradiation my chances are 50/50. I'm on the fence quite frankly. My next steps will be getting additional input. My choices will be 1) go straight to surgery and have a colostomy bag most certainly, or 2) do chemorad and roll the dice on the 50/50.

Through all of this I'm continually overwhelmed by my loving husband, family & friends. It makes times like this so much easier. Love to all. Will keep you update as soon as more decisions are made.

Love & peace,
Steph
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