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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Duke Transplant Evaluation - The Decision

Duke Transplant Evaluation Decision - Friday August 13th

All week I've been taking stock of last weeks evaluation, discussions, etc. If nothing else it's a way to pass the time until I get "the call". Now this call is not "THE CALL" (the call that a new set of lungs is waiting for me) but it is still an important call none the less. This call will reaffirm or change my thoughts on where I'm at in the transplant process. Currently I'm thinking that I'm getting closer but probably have at least a year or maybe two until it's time to get listed. My health is at the point where this could change suddenly given another big illness or two. My local doctors think about the same as I do. So, will the Duke docs make the same conclusion???

Well the call came at the most interesting of times. After being out of town in NC for a week and returning to finish off the deck we/Randy has been building, we hosted 15 or so at our house for two days of Phish concerts. Honestly sometimes I wonder when I'll have time to get transplanted. Anyway, the call came on Friday just as we were loading up the bus to go to the show. It was the last possible moment I was home before leaving for the night. But it was also the best possible moment for it to come. It relieved that sense of waiting hanging over my head all week and let me enjoy the rest of the night.

Lauren the pre-transplant coordinator made the call. Just as I expected they don't think I'm ready to be listed yet. The gameplan is to do the following:

1) Have an endoscopy & colonoscopy here locally to further investigate my GI issues.
2) Start on a drug called Reglan to help my esophogus heal.
3) Come back in 3 months for follow up and additional tests at Duke.

Whew what a relief! As usual things are what they are. In this case they are also exactly what I need :) Now back to life.

Duke Transplant Evaluation Day 5

Note to readers: these transplant evaluation recaps are delayed because I was just to darn exhausted to blog during that week. Enjoy.




Day 5 - Friday August 6th

The final day was all heart stuff. A cardiac catheterization, a 2-D Echocardiogram, and an EKG. The cardiac cath is a procedure where they send a shunt up your femoral artery (starting in your groin area) and measure pressures & see how well the heart is functioning. This test is not painful and easy from a patient standpoint. The worst part today was the wait. We waited for several hours for me to get the procedure done. In fact people that arrived after me were going home before I even got taken back. Somewhat frustrating but oh well what can you do. At least I had a book and Randy to keep me company. The doctor said my heart and pressures were normal which is awesome. When you have bad lungs your heart has to work that much harder so it's great mine is holding up.

Finally we got released around 4:30pm. I slept most of the way to my Aunt Debbie & Uncle Jim's. Debbie was away for a hiking trip. But being a southern woman she of course made sure a wonderful meal was ready upon our arrival. What wonderful family I have. It felt great to be away from the hospital/clinic and to someplace that felt more like home. Now that the tests are done it's time to go home, rest, and wait for the committee's decision. Will post again once I know something more.

Duke Transplant Evaluation Day 4

Note to readers: these transplant evaluation recaps are delayed because I was just to darn exhausted to blog during that week. Enjoy.




Day 4 - Thursday August 5th

Today started off bright & early getting to the clinic at 7:30am. I'm usually not even awake by then so being ready that early was a real challenge. Thankfully most of my tests today were Radiology and fairly easy. The first was a Chest CT. No biggie there. I just had to lie down and breath when they told me. Of course the holding the breath part can be hard but not too bad today.

Then came the VQ Scan. This test starts by having you inhale a radioactive gas. The purpose is to see how well your lungs exchange gas. The second part measured the blood flow in the lungs by injecting a radioactive dye. Again not too difficult.

After inhaling & being injected, next I got to swallow radioactive barium. This test measures how well my intestinal tract is working. It's not particularly difficult but the barium sure tastes nasty. Imagine drinking a cupful of slightly liquified chalkdust one swallow at a time...yuk! The upside was being able to see the screen that showed the stuff going down my esophogus & into my stomach. Pretty neat.

The last test was just an ultrasound of my carotid artery. Almost fell asleep in this one.

The day ended with an appointment with Dr. Scott Palmer. Dr. Palmer used to be the director of the transplant program but now is the scientific director. I was really excited to get him as I'm always interested in what research is out there. Our discussion began with my recent medical history. After that he asked what I thought about the timing of me being listed. I told him listing in the next month would seem too soon but that I feel like I'm on the edge and it wouldn't take much to push me over. He concurred.

Dr. Palmer said most of my results would make me an excellent candidate when the time came. However, the manometry study and barium swallow indicated that I have esophogeal motility issues & acid reflux. So the next steps are to try and get that under control via some new meds & additional testing. He wanted to see me again in a few months and not list me yet. Of course this will all be finalized for sure once the committee meets on Tuesday. I really enjoyed meeting with Dr. Palmer. He is very bright and had some amazing insight into the research they are doing at Duke. This meeting really reaffirmed my decision to come here.

Duke Transplant Evaluation Day 3

Note to readers: these transplant evaluation recaps are delayed at least a week because I was just to darn exhausted to blog during that week. Enjoy


Day 3 - Wednesday August 4th


Sleeping last night was not the easiest. I had the tube down my nose and was cuddled up to my pH meter. The meter was a poor substitute for my usual snuggler Rocky (one of my Boston Terriers). Unfortunately I still had to lug that darn thing to my pulmonary rehab appointment too.


Duke's Center for Living is where they have the pulmonary rehab. It is a huge indoor facility with a pool, tons of equipment and an indoor track. When I got there they had aerobics and spinning class both going at the same time. Yes it's that big :) I met with the PT Danielle. She showed me the facilities and briefly discussed their program. She also did a physical assessment including my feet. She found I had low arches and gave me a list of workout shoes that would work for my foot type. Very cool. I've had that done at a runner's shoe store but did not expect that level of depth from my rehab assessment. The last thing to do was my six minute walk test. During this test you are to walk as far as you can in six minutes. You can use as much oxygen as you need but I'm still lucky enough to do it just on room air. It was a great day for me. My results were just over 1500 feet. Duke requires that you walk at least 1000 feet to be considered for listing. Yea another test passed!!! Not only that it was higher than my 1200 feet I walked after graduating from pulmonary rehab at home here in Indy.


Then we left to go back to the clinic and had my nose tube pulled. What a relief :) Our financial coordinator appointment was next. Julia spelled out the in and outs of what would and would not be covered by my insurance. Thankfully I have terrific insurance through work and my coverage amounts are good. There will be out of pocket costs for my med co-pay and travel & lodging once I exceed my cap. But I'm much luckier than most. It was not a total slam dunk though. Julia brought up many provocative questions about my LTD coverage and also about how my private insurance will interact with Medicare once I'm eligible (in about a year). She is such a great resource and I'm glad to have her on my side.


The next stop was the transplant psychologist. Jenny Wang is really great. She has a warm personality and is very easy to talk to. Our visit started with Jenny, Randy, my mom Robin and me all in the room. Then Jenny met with just me and then with Randy & my mom. Overall things went very smoothly. She suggested I start seeing my local therapist again so I have another emotional outlet as things get rougher. When you deal with a chronic disease sometimes it's hard to discuss all of your emotions with those you are close too. Randy & I share everything but I hate burdening him with everything when he is under a lot of strain too. So my therapist Lin is a great extra help in this area. Jenny seemed to thing everything else looked AOK so another test passed!!!


Last but not least was the vampire aka the lab. For a transplant workup they run a huge number of blood tests. The lab tech drew a total of 23 vials. She started on one arm and when that clotted off had to use the other. It really wasn't that bad but did make me a little lightheaded.


After leaving the clinic we went to see a few more apartment complexes. It's a little weird doing it since we don't know exactly when we will move down etc. But at least we get to see the possibilities. Right now we're debating furnished turnkey vs unfinished and bringing some of our furniture or renting some ourselves. It seems like the charge for it to be turnkey is a little high. Randy has done a lot of research which is great. But I'm thinking easy will be the way to go when it's time to move down. I'm guessing I'll be sick enough that low stress will be the best.


The day ended with another wonderful dinner. Almost my entire NC family drove down to have dinner with us. We ate at Four Square in Durham. The food was very fancy and a really nice atmosphere. But Nana's still has them beat ;) Had a great time hanging out with all my aunts, uncles and my cousin Meagan. It's weird but lately it feels like they look at me in a slightly different way. It's not bad but there's something that makes me feel how much they care that I am able to get this transplant and that I must be getting closer to needing it. I'm SO fortunate to have such an amazing family for sure. Having them close will make this whole thing much easier.


Good night,
Steph

Duke Transplant Evaluation Day 2

Note to readers: these transplant evaluation recaps are delayed a week because I was just to darn exhausted to blog during that week. Enjoy.

Day 2 - Tuesday August 3rd

Day 2 started out fairly easy with a full pulmonary function study and arterial blood gas draw. Keep in mind that these are easy relative to some of the other tests. My FEV1 result was 25% to which the technician said "oh that's good they will like that number". Looking perplexed I asked what good meant. She said that number is in the range they want you in to be listed. Once again I'm hit full force with the reality that this transplant thing might be getting closer than I anticipated. The sense of the inevitable is mixed with a blend of sadness, relief, and excitement. When the time comes I'll be sad in admitting that my lungs have finally failed and there is nothing more I can do to keep them going. But on the flipside I'll be relieved and excited to have some other option that will allow me to live a life full of breath.

The ABG blood draw hurt a bit but otherwise was uneventful. Only a small bit of torture compared to my next test.

Then I went to have a pH/Manometry test. For the Manometry the techs numbed my right nostril and the back of my throat. Then they snaked a tube the width of a straw up my nose and down my throat. This part was not painful but made me gag like crazy. Of all the procedures I've ever had this was in the top 5 for most difficult. And no sedation :( While the tube is down you are not to swallow for 30 seconds (not easy after you've been gagging right before this and have a mouth full of saliva). Then they have you take a series of swallows of water. The purpose of all this is to measure how well the muscles in your esophogus work. Then they removed the large tube and snaked another much smaller tube down. This one is about the width of a coffee stirrer and will stay in for 24 hours. It's attached to a monitor that will measure the pH levels in the portion of my esophogus just above my stomach. During the test I have to keep a log of when I start and stop eating or drinking and also every time I cough. Recording every cough will be a challenge since it's so second nature to me.

Next we met with the transplant surgeons. I'm really not that scared about the actual surgical part of transplant. The surgeons seemed to think this meant I thought transplant was not big deal and let's just go for it. I'm highly aware of how difficult and uncertain transplant can be and want to keep my lungs as possible. But my biggest concerns are what happens after the surgery not in the OR. Drug side effects, rejection, other related issues like diabetes, and the poor long term survival rates are WAY more daunting in my opinion. But maybe it's just because I've had so many operations, have witness a neurosurgery, have a mother as a nurse etc. that make me a bit desensitized.

The final meeting of the day was my most highly anticipated...infectious disease. The doctor assigned to me changed at the last minute and we got Dr. Cameron Wolfe instead. Dr. Wolfe is a wonderfully funny & cute Aussie doc. Thankfully he seems highly competent as well. We got to share stories about our six week trip down under back in 2002 and really felt at ease with him. The best part of the appointment was finding out that my resistant pseudomonas would be something they could handle post transplant. Although I'm still a bit concerned that really eased my fears quite a bit.

Another day filled with some good, some bad, and some in between. This is really a mentally and physically exhausting process. And that nose tube thing is a real pain!!!

Duke Transplant Evaluation Day 1

Note to readers: these transplant evaluation recaps are delayed a week because I was just to darn exhausted to blog during that week. Enjoy.


Day 1 - Monday August 2nd
Hey All,
Tried to think of a catchy title for this one but WAY too much going on yesterday for me to distill it into one catchy phrase.

We arrived in Duke Sunday around 6pm. Thankfully the drive was much shorter than the 12 hours I had anticipated. No laws were "excessively" broken getting here either. We're staying at the Washington Duke Inn right at the edge of campus and very close to the hospital. It's a very beautiful place and very fancy. Thankfully I'm getting a great rate through a Medstay program and can therefore afford to be spoiled. It's really the perfect place for short term stays here. We can talk long term options later.

The day started off with Transplant Orientation lead by pre-transplant coordinator Lauren Rich. Lauren and I have spoken by phone and via email and it was so cool to put a face with the name. Speaking of faces both Randy & I were thinking how much she reminded us of someone. We both separately concluded that she looked and acted a LOT like our friend Liz. We met Liz when she worked out at the CF Foundation. Liz is beautiful, cute, radiates energy, is enthusiastic, intelligent and has great compassion (and no she didn't pay us to say this). Lauren is much the same. You can tell she has a great depth of knowledge and a passion for what she does and those she is helping.


Two big shockers came out of the event. Lauren mentioned that some of the attendees were only there for a few days of testing and others were there for a full week. The two day evaluations were for those further away from the transplant timeframe while the week long evaluations were for those a few months away from getting listed. I’m thinking my transplant wouldn’t be for another year or two. But my evaluation is for a week??? Does that mean that I’m closer than I think? The other shocker is Duke’s no alcohol policy. Once accepted by Duke I’ll have to give up my wine with dinner and the occasional margarita. The wine will be the hardest. Eating a steak without a nice red just seems wrong. But I guess if the choice is new lungs or wine the choice is a no brainer!


After orientation we met with the social worker. She got to know us, gave us info on long term accommodations, and told us a story about a guy giving up his 3000 bottle wine collection during his transplant journey,. I guess if he can do it so can I.

Then we met with Dr. Blazing the cardiologist. He did a physical exam and told me that the pressures in my arteries seemed to be only slight. He was able to tell this by looking at my eyes. Very cool. He also thought my right heart might be working a little hard but nothing severe yet. When you have lungs with lots of blockages it makes the right heart work harder to pump all the blood through them. We briefly discussed the cardiac cath test scheduled for Friday. Our only final question was what restaurants he suggested. Honestly I think we spent more time talking about that than my heart. He was so much fun!


The last appointment was with Dietary. In the past I’ve not had much luck with dieticians. Often I know more about what works for me to put on the pounds than they do. Fortunately, Wendy was an amazing dietician. She really understood the ins & outs of CF. We discussed post transplant diabetes and possible gastroparesis. Her insight made me feel more at ease with those issues. Once again another fun & bright “Dukie”.

After a long and somewhat overwhelming first day we treated ourselves to dinner at Nana’s (think euro cuisine meets the south). Nothing like chicken liver pate to end a long day…YUM!!!

Off to Duke

Hey All (or maybe it should be Y'all since I'm heading south),

Just a quick update before we hit the road. Leaving today for my lung transplant evaluation at Duke Medical Center in NC. Just a short 12 hour drive and we will be there ;) Hoping to be on the road by 7AM. My first appointment Monday is at 8.  I'm NOT an early riser nor would I consider myself to be exactly cheery for the first hour or so I'm awake. Ask my hubby Randy; he will confirm that for sure. So the gameplan is to get to Durham by early evening to have time to get settled in and organized to get up early the next day. No rest for the weary...or is it the wicked?

Really excited for my appointments Monday especially with the infectious disease doctor. My biggest concern right now is the drug resistance of my pseudomonas and how that will impact a potential transplant and the ability/timing of getting listed. Once this appointment is done the rest of the week should be gravy. Well maybe having a tube hanging out of my nose won't be but I can be optimistic right? More on the tube thing later this week.

I'm hoping to update the blog every day this week so you can get an insider's view on the evaluation process. Blog at ya tomorrow and thanks for listening!

Peace,
Steph

The waiting is the hardest part

So here I sit waiting for my treatments to be over. As I sit I'm thinking of how much longer I'll have to wait until the heat & humidity break and I'll feel better. Then I wonder if I'm really just waiting for the perverbial shoe to drop and face another exacerbation. Lying beneath the surface of all this I'm still waiting on my big trip to NC to get evaluated at Duke for lung transplant. And last but certainly not least I'm waiting for new lungs. This is the hardest kind of waiting of all.

Why is this waiting hard? Well the eternal optimist in me (although sometime's her voice has been a bit quiet lately) is hoping these lungs make it AT LEAST another 2 years or so. Really I do think this is possible. But is another five or more possible? Lately my body is giving me signals no. Not to be a Debbie downer or anything but my body is just getting more tired of fighting. My energy level is down quite a bit from my late 30s. Of course maybe it's just that hitting 40 means things start falling apart a bit anyhow. But way down deep I'm feeling that my lungs are like an old junker car that you love and keep gimping along but really needs replaced with a new model.

Of course the yogini in me says hey enjoy the wait and live in the present moment. That voice needs to yell at me a little louder too by the way. But sometimes even though I know that's the truth it's hard to listen. And to be honest sometimes you need to feel a little bummed about the realities of what's going on, admit it, embrace it, and then move on. I guess writing this blog today is my way to do that. It's OK for me to be tired, OK to feel frustrated by being so tired, OK to need to vent, and eventually be OK with accepting all of the above and move forward with the rest of life.

For now I'll wait for that acceptance phase and hope as always for the best. Thanks for listening.

Such a good time I forgot I had CF

Well kids it's been a fun weekend for sure. Some of our dear friends were in town for the Umphree's Mcgee show downtown in Indy. At first we thought only 2 were coming but it was even more fun having more last minute. Linda, Mitch, Jodie, Steve, Dave, Will, and Robbie are friends we met in various ways through Jamcruise (see Soul Vacation post for details on that one). Having them in town made me realize two important things. 1) How lucky we are to have such cool, fun, and caring friends and 2) that I need to not let my daily struggles make me withdraw from such wonderful people.

To be honest lately it seems that I'm getting to be too much of a homebody. But this weekend was different. Last night was the perfect night out. The concert had great lighting but even more exciting was the lightning in the sky. Seems like the lighting tech had control of it somehow and coordinated it with the music. The wind brought awesome breezes and AMAZINGLY it only sprinkled once for a short time. Basicially the best weather ever for a show. Saw a group of our local friends at the show and later at the American Legion for an afterparty. Again, definately need to get our more. Had so much fun and energy that I really felt like my old self. AND IT WAS FUN!!!

Thanks again to all of my friends and family for understanding those times when I get detached for various reasons. Today my body had CF but my mind and spirit did not :)

In my mind I'm gone to Carolina

First post in a long time. Lots to cover for sure. I've been neglect in posting because of said "lots to cover". Probably because it is such a daunting task. But then I got some big signals that it's time to blog again. First, my wonderful cousin Julie keeps asking about me. Thanks Julie :) Then, a CF friend Piper had a transplant (YEA!!!). I've been following her blog for some time. I realized how much her blog (and others) helped me stay positive about my disease. And then it hit me...maybe my blog is or could be the same for others. So I'm back.

So where have I been lately? First, I've been in yoga teacher training since last March. I took the training just to deepen my practice but may end up being a teacher at some point anyhow. The experience and my classmates & teachers are the most amazing people. Namaste to them all. Of course we have traveled quite a bit too. The horse races in Lexington in April. Camping in Arkansas in June. Etc etc. In fact today we are off for North Carolina to celebrate the 4th of July with my family. Its an annual tradition complete with themed dinners & drinks (Mexican, Carribean, All American), lots of talking and not a lot of sleep. Hence in my mind I'm gone to Carolina (in the words of one of my favorite singers James Taylor).

But there's another reason my mind is gone to Carolina. Lately I've been doing OK but my infections are getting more frequent and more severe. Within the last 12 months I've been hospitalized 3 times and only off antibiotics about 30% of the time. Plus I have a strain of Pseudomonas Aeriginosa that is getting very resistant to antibiotics. Pseudomonas is the bug I grow in my lungs that damages them the most. At the end of April I had my annual check-in with Dr. Reynolds of the Clarian transplant team here in Indy. In light of my recent illnesses and low lung capacity, we decided it is time to proceed with evaluating me for transplant. I'm not sick enough to get listed yet but who knows when another serious infection could put me over the edge.

The evaluation process is a week of medical tests, meetings, etc to evaluate how you would do physically and mentally during the transplant processs. They want to insure you don't have cancer or some other illness that makes you ineligible. It's also important that you and your support network will be able to handle the mental demands that will come. So Clarian started setting up my testing and clearing things with my insurance. Then I got the news; Clarian is currently out of network for my insurance company. YIKES!!! Could it be possible that my center which has been following me for 17 years is really out of network???? We double triple checked it and yes for sure 100% it's true. That may change at some point in the future but right now the only transplant center in Indy is not a possibility for me. It's a total bummer because I really love Dr. Reynolds and think he would be great to have as my doc post transplant.

So the next step was to find out where I could go. In the midwest Cleveland Clinic and Barnes-Jewish St. Louis are the best options. However, I have lots of family in North Carolina and Duke is in network. After lots of thinking, consulting my local docs, and asking questions of the centers via phone, I decided on Duke. It is one of the best centers for lung transplant in the country and has the best pulmonary rehab program. In addition they specialize in transplanting  CF people with drug resistant bugs like my Pseudomonas. Seems like a great fit. The distance will be a challenge but thankfully my insurance does cover travel and lodging up to a certain amount. We will have to relocate for about a month pre-transplant and three months post. Since Randy is self employed and works from a laptop we should be able to manage it fairly well.

My evaluation at Duke will be the first week in August. So my mind has been going to Carolina a lot lately. I'm very excited to meet the team down there. However, I'm also a bit worried that they might do all my tests and either a) find something that would disqualify me, or b) say not only are you a good candidate but due to your Pseudomonas progression we think you should be listed now. Granted I don't think either a or b will happen and I'm guessing they will say c) you are a great candidate and we will accept you in our program and will follow you until it's time to put you on the active transplant wait list.

For all of you that are freaking out about this whole transplant thing, know that I've been down this road before. Back in 1992 I was evaluated and put on the active list here locally. At the time I was in right heart failure and on oxygen 24/7. Exercise and a new drug Pulmozyme saved me and transplant was put on hold. Of course it was a major freak out back then to think about transplant at 23. It's easier now but still a lot to wrap my head around. I'm still shooting for growing old with Randy of course and don't want to leave him anytime soon. But the days are getting harder and my energy level is getting lower. Back in 92 my doctor Mason Goodman talked about quality vs. quantity of life. Of course back then I still wanted to hit 35 because that was "old". Now I'm thinking more and more about quality. I've had an amazing and adventurous life up until now and want to have the lungs to forge ahead even if it's only til 50 or maybe even 60. There are still lots of dreams to accomplish and I'm at a point now where it's time to give back and I need more energy to do so.

I'm fully aware of how really lucky I've been and grateful for it every day. CF has given my a wonderful perspective on life. Also, for having CF I'm one of the lucky ones.  A recent article (http://www.ctpost.com/news/article/CF-patients-live-longer-some-diagnosed-as-adults-531674.php) had another shocking stat. Only 5% of people with CF survive past the age of 40. When you consider that includes people that have been transplanted it's even more amazing. So without transplant I'm already at 41...yes I'm definitely lucky :)

I guess that's it for now. Thanks for indulging me and listening. Now I'm off to Carolina both in my mind and my body.

Peace, love and happy 4th.
Steph

If pigs had wings...away they'd fly!!!

In honor of National Pig Day (March 1st), I'm finally getting around to explaining this pig thing.

To be honest I'm not 100% sure where it all began. One of my favorite childhood books is Charlotte's Web. I loved the fact that Wilbur the pig escaped his destiny and lived a long life. Maybe even then I knew something would be extraordinary about my life (both good and "bad"). Other pig moments included appearing as one in a 3rd grade play and getting a card from my Grandma addressed to Stephie Piggie Dickie. Ever since getting that card the pig thing has taken on a life of it's own. Now I've gotten so many pig gifts that occassionally duplicates are received.

Of course pigs are so cute and I'm sure that's part of my interest in them. However, the real magic is in the concept of the flying pig. I really fell in love with flying pigs back when comedian Heywood Banks sang "If pigs had wings...away they'd fly". If a vertically challenged pig might get lucky enough to grow wings and fly maybe there was some hope for me.

Having CF has made me both vertically and horizontally challenged. A pig is limited by it's weight and girth. I'm limited by my ever declining lung capacity. If a pig can grow wings then maybe I can make it till I get wings of my own. My wings would be in the form of a double lung transplant. How wonderful it would be to fly or even just run a block. Someday hopefully the dream will be a reality.

Of course there is no guarantee with a transplant. So until then I'm trying my best to get by with my lungs for as long as possible.  This has gotten more difficult over the last few years. I'm sick more often and have less energy than before. But I'm still as determined as ever :) . I just walked a slow six miles today and start a yoga training program tommorrow. Maybe this pig does have wings...

Happy Pig Day!!!
Steph

Soul Vacation

Getting back into the groove after a week of grooving. Confused yet? Wasn't I just posting about being in the hospital? How on earth could a hospital be considered "groovy"?????

I was sprung from the Taj on Tuesday December 29th after a nine day stay. I had hoped to get out much sooner but a few glitches and an unexpected bronchoscopy kept me in a bit longer. Didn't get home for Christmas but did for New Year's Eve and more importantly Jam Cruise!!! Jam Cruise is a charted music cruise that we have been doing annually for the last six years. It's six days packed with live music, costumes, great friends (some which we only see annually), and one of the best times we have all year. Far be it from me to let a little pneumonia get in my way of having a good time ;)

It was a very difficult decision whether to go or not. Our flight was on Jan 2nd and therefore we only had a few days to prep for the trip. Not only that but I was still finishing up IV antibioitics and needed supplemental oxygen after I got discharged from the Taj. Obviously my body was not in the best shape for travel and six days packed full of non stop action. As I thought about going I kept remembering all of the old people with COPD that take cruises because they are very handi accessible and can be restful. In the end I decided (and reassured my mom multiple times) that six days on a cruise ship might be the best place ever to get well. Thanks to some quick action on my part and help from my various medical providers, I went on the trip with a portable oxygen concentrator and finished up my IVs the night before we boarded in Ft Lauderdale. I had every drug, piece of equipment, etc. that I could possibly need, so everything that I could do at home I could do on the ship. Of course including costumes etc this put at us two 50lb checked bags, two roller carryons, a backpack, and the portable oxygen concentrator. Of course I'm a bit of a clothes horse so the medical stuff can't be blamed for all of it ;)

The first part of the trip was all about me not being too proud to admit I was struggling. At the Indianapolis airport I asked for wheelchair service to help keep myself rested. It made things so much easier especially getting through security in a relaxing way. Friends picked us up in Ft Lauderdale and we headed to our hotel for the night. The hotel was packed full of Jamcruisers and it was great to catch up with so many. Everyone was so supportive and it made my wearing of oxygen in front of them so much of a non-issue. My friends we just happy to see me and vice versa. I also made things easier on us by "cutting" in line getting on the boat. The Jam Cruise and MSC cruise staff made my boarding process a piece of cake. Thanks!

Once on the ship my top priority was health first. I was very strict about completing all of my treatments, getting enough rest, etc. While this meant I missed out on some of the music etc., I learned that I enjoyed the times I did get out and about much more because I felt better :) Listening to my body really paid off this time. Every day I got better and was able to do more. And because I was able to do more (dancing, walking etc) every day I felt better!!! By the end of the cruise I was off oxygen (except while sleeping for a safeguard), and even did yoga the last day. YIPPEE!!!!!

Now I'm back home and reintegrating into my "normal" life. Whatever that is. The love of my friends, the fun, the music, the salt air, and the experience gave me just what my body and more importantly my soul needed...a vacation. Thanks to all who helped make it possible and to my family, friends, and doctors who supported my decision to go.

Now off to my workout. My next adventure is training for the Mini-Marathon in May. Who knows if I'll finish it but it's more about the trying than anything.

Peace,
Steph