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.
Sunday, November 28, 2010
Saturday, November 20, 2010
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
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
Saturday, September 11, 2010
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
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
Friday, September 3, 2010
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
.
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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Wednesday, August 18, 2010
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.
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.
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.
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.
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