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!

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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