Today's step was tentative and tired. Yesterday I had bloodwork done and found out that my platelets are fairly low, which explains the constant nose bleed I had all day (yesterday) and well into the midnight hour. When I finally fell asleep, it seemed I had barely blinked an eye before the alarm went off and I met the day. It seems many of us had a cross to bear...so many people complained of being really tired today. I guess it will take a few days to get back in the swing of things.
At the risk of jinxing the situation, I seem to have a really good group of students this semester. My evlauating principal spoke to all my classes yesterday about my health issues and how to handle things if they feel sick in my class. "The talk" worked really well last semester and I got sick only once, with some type of sinus/head junk. I'm so appreciative of the support system I have at work; everyone has been and continues to be so kind, caring and concerned.
I'm excited to have a new class in my line-up...Housing and Home Furnishings. I've never taught it before, but given my love for decorating and HGTV, I'm anxious for the opportunity. My freshman class will be studying foods this 9 weeks, so I demonstrated how to make chocolate biscuits today. I saw the recipe in the paper recently and it sounded really good, so I gave it a shot. It turns out that the aide who went to Walmart to get supplies yesterday failed to put the groceries away, including the milk needed in the recipe, so after having sat on the counter all night I had to use water as the liquid. The flavor and texture were greatly impacted, plus I wasn't able to make the chocolate sauce to serve with the biscuits. Can't wait to discuss the results tomorrow!! Just goes to show that none of us is successful in the kitchen all the time.
I tried a new recipe for dinner tonight...meatball sandwiches. While good enough, I have some tweaking to do to improve the flavor, and am anxiousto do so. Jessica's opinion was that the meatballs were too big and I knew Danny wouldn't like them, so I made him a burger. We'll see what I can come up with.
Until tomorrow, Happy Trails!
Wednesday, January 4, 2012
Tuesday, January 3, 2012
Step Three
Back to school for a little while today, and it took nearly 3 hours to get all my grades entered and submitted. At least that's behind me for 9 weeks, and for that I'm extremely grateful. My dad had cataract surgery this afternoon in his right eye, and fortunately all went well. The nurse told him as she prepped him for surgery that he was going to be able to see so much better afterward. I'm sure his sight had gradually gotten worse and worse, to the point that he probably wasn't even aware of just how bad it was, so when the patch comes off and he's finished with his eye drops, he'll see a whole new world!
As I took the third step of my journey today, I couldn't keep from thinking about selfishness. So many of us focus on "me" and not "we", and that stifles our growth so much. Whether we're impatient with others, only in it for the benefit to ourselves, or only caring about our own feelings and not those of others, we cannot possibly complete our life's journey with a selfish attitude. We all have our crosses to bear, and how we embrace, understand and carry those crosses impacts us and those around us.
I recently read an article about a woman, probably about my age, who felt she had made nothing of her life since graduation (she's a nurse). Recently divorced, she was trying to get her finances to balance and trying to adjust to being single. Her thoughts wandered back to her junior high days and the "bright spot" in her life...her home ec class. She remembered the teacher making her feel noticed and she always found something positive to say about her students' projects. Thirty years later, she still used what she learned in home ec. No matter how tough things got, she could motivate herself by sewing, cooking or decorating. She even had a second career as a decorating consultant.
The woman decided to tell her former home ec teacher how much she had impacted her life, so she found her address and mailed her a letter to let her know just what her encouragement had meant to her all those years ago. Three days after having mailed the letter, the teacher called her at work to thank her for the letter and insisted that the woman visit her. The next night, she did so. Over a cup of tea, the teacher brought out her copy of the junior high yearbook and found the woman's picture. In it, she was wearing a skirt she had made out of her mother's old drapes, which were about to be thrown away. Mortified, the woman listened as the teacher praised her for her creativitity and imagination, then went on to tell the teacher that she was convinced she was a failure. The teacher pointed out that everyone feels that way from time to time, and brought to the woman's attention the fact that she works with people who really need her. Come to find out, the woman was a published author, and had saved a log cabin from being bulldozed down, fixed it up with antiques, and was living there.
What an inspirational story!! I left it for my students to read today in my absence with a note to let them know I want to be that teacher to them. I want to be unselfish in respect, compliments, encouragement, and most of all in successfully teaching them the tools they need to survive in a sometimes difficult and selfish world.
Happy Trails!
As I took the third step of my journey today, I couldn't keep from thinking about selfishness. So many of us focus on "me" and not "we", and that stifles our growth so much. Whether we're impatient with others, only in it for the benefit to ourselves, or only caring about our own feelings and not those of others, we cannot possibly complete our life's journey with a selfish attitude. We all have our crosses to bear, and how we embrace, understand and carry those crosses impacts us and those around us.
I recently read an article about a woman, probably about my age, who felt she had made nothing of her life since graduation (she's a nurse). Recently divorced, she was trying to get her finances to balance and trying to adjust to being single. Her thoughts wandered back to her junior high days and the "bright spot" in her life...her home ec class. She remembered the teacher making her feel noticed and she always found something positive to say about her students' projects. Thirty years later, she still used what she learned in home ec. No matter how tough things got, she could motivate herself by sewing, cooking or decorating. She even had a second career as a decorating consultant.
The woman decided to tell her former home ec teacher how much she had impacted her life, so she found her address and mailed her a letter to let her know just what her encouragement had meant to her all those years ago. Three days after having mailed the letter, the teacher called her at work to thank her for the letter and insisted that the woman visit her. The next night, she did so. Over a cup of tea, the teacher brought out her copy of the junior high yearbook and found the woman's picture. In it, she was wearing a skirt she had made out of her mother's old drapes, which were about to be thrown away. Mortified, the woman listened as the teacher praised her for her creativitity and imagination, then went on to tell the teacher that she was convinced she was a failure. The teacher pointed out that everyone feels that way from time to time, and brought to the woman's attention the fact that she works with people who really need her. Come to find out, the woman was a published author, and had saved a log cabin from being bulldozed down, fixed it up with antiques, and was living there.
What an inspirational story!! I left it for my students to read today in my absence with a note to let them know I want to be that teacher to them. I want to be unselfish in respect, compliments, encouragement, and most of all in successfully teaching them the tools they need to survive in a sometimes difficult and selfish world.
Happy Trails!
Monday, January 2, 2012
The Second Step
The second step of my journey created mass chaos. I made the mistake of going to Walmart and Kohl's, and while I was able to finally do some after-Christmas shopping for next year's supplies, my dining room table has once again become the catch-all for most of it. However, my to-do list this week includes taking down the tree and packing it all away, so that will help create some order.
I spent a good portion of the afternoon grading so I can input grades by tomorrow's deadline of 4:00. Unfortunately, the remote capability of entering grades at home won't work on our internet, so I have my work cut out for me at school tomorrow. The good news is that I have a sub all day because my dad has an appointment, so I'll have a couple of hours before the appointment to get things done.
Another chunk of my step today went toward completing a "Me Collage" to share with my students. I made it on a boot box and will encourage them to recycle something on which to make theirs this week, rather than using the usual poster board. It turned out well, but there's just no end...I keep finding things to add (and I'm about out of room) and keep thinking of things I left off (and I'm about out of room). It's fun to see how much mine has changed since the one I made 5-ish years ago. What a journey I've had, and I'm grateful for every step!
As my winter break comes to a screeching halt, I'm glad for all the things I set out to do and actually accomplished, but have no remorse for the things I didn't get done. The biggest task at hand (next to un-decorating) is to make a baby quilt for a teacher who is due in the very near future. Her baby shower was on December 10, but since I was unable to attend, I decided to focus on the project over break. However, between having to majorly de-stress and finish Christmas tasks and the bland embolization procedure (and recovery), I simply ran out of time. Perhaps the third step...
Happy Trails!
I spent a good portion of the afternoon grading so I can input grades by tomorrow's deadline of 4:00. Unfortunately, the remote capability of entering grades at home won't work on our internet, so I have my work cut out for me at school tomorrow. The good news is that I have a sub all day because my dad has an appointment, so I'll have a couple of hours before the appointment to get things done.
Another chunk of my step today went toward completing a "Me Collage" to share with my students. I made it on a boot box and will encourage them to recycle something on which to make theirs this week, rather than using the usual poster board. It turned out well, but there's just no end...I keep finding things to add (and I'm about out of room) and keep thinking of things I left off (and I'm about out of room). It's fun to see how much mine has changed since the one I made 5-ish years ago. What a journey I've had, and I'm grateful for every step!
As my winter break comes to a screeching halt, I'm glad for all the things I set out to do and actually accomplished, but have no remorse for the things I didn't get done. The biggest task at hand (next to un-decorating) is to make a baby quilt for a teacher who is due in the very near future. Her baby shower was on December 10, but since I was unable to attend, I decided to focus on the project over break. However, between having to majorly de-stress and finish Christmas tasks and the bland embolization procedure (and recovery), I simply ran out of time. Perhaps the third step...
Happy Trails!
Sunday, January 1, 2012
January 1, 2012
Happy New Year! As 2012 gets off to a rolling start, I am setting off on my inspirational "journey". For nearly 56 years I have woven my way through life, not appreciating as much or as deeply as I should have the people, places and things which I have had the good fortune to encounter. I don't know if it has something to do with being "middle-aged" or if I had an epiphany, but I have come to the realization that time is limited and most people don't get an advanced warning of when their time will come. I look back at all the time I've wasted, the clutter I've collected, the opportunities I passed up, and am now on a journey to utelize every minute, reduce, seize the moment.
I know it won't happen overnight, and when I take stock, I become extremely overwhelmed, but my motto today is, "The journey of a thousand miles begins with one step." (Lao Tzu) How do you eat an elephant? One bite at a time. How do you make a journey? One step at a time. Happy Trails!!
I know it won't happen overnight, and when I take stock, I become extremely overwhelmed, but my motto today is, "The journey of a thousand miles begins with one step." (Lao Tzu) How do you eat an elephant? One bite at a time. How do you make a journey? One step at a time. Happy Trails!!
Saturday, December 31, 2011
Auld Lang Syne
The last few hours of 2011 are quickly passing and I say, "Good riddance!!" to chemo and "Hello" to my new journey for 2012. Journey is my spiritual word for the upcoming year as I continue along the path I've been given, in anticipation of growing, living and surviving. But first, some loose ends to tie up since April.
The last time I blogged, I spoke of ascites and aspiration. In total I went through the process four or five times from beginning to end before I was put on two diuretics to maintain the fluids in my body. The largest amount of fluid aspirated was 5 liters, collected by Dr. McCollum (with whom I would be reaquainted in December). Since being put on the water pills, I haven't had any problem with fluid collecting in my abdomen, but my blood counts have to be strictly monitored for kidney damage/failure from the pills.
In April, I began the first of what was to have been six chemo treatments (even though carcinoid is NOT noticeably affected by chemo) because my oncologist felt the liver tumors were becoming more aggressive and that the carcinoid may not have been as slow-growing as once believed. I called the doctor in New Orleans who suggested that chemo was not the way to go...it would offer only a 15% efficacy, and would not be worth losing my hair plus all the other side effects I would suffer. Danny and I discussed it and decided that we had too many cooks in the kitchen and we needed to pick one and go with it. We went with my oncologist here and proceeded with chemo. I admire the strong folks who are able to drive themselves to and from their treatments and who have the wherewithall to function "normally". That was not the case with me. The first round wasn't too terrible, but after the second, I began to lose my hair, so Danny shaved my head. Jessica graduated UCO on May 6 and looking (and feeling) like something the cat dragged in, I proudly attended her commencement. I never returned to school for the rest of the semester, which meant that not only was I letting my students down, but my friends had to pack up all the stuff in my room for the big move to the new high school. I felt terrible in more ways than one. I am tremendously grateful for the prayers of friends and family and for the special effort of Karen, Murphy, Tracy, Laurie, Pat, Carol and everyone else who went above and beyond mere friendship. I am truly blessed to have such wonderful friends.
June 7 rolled around, and I had completed 3 of 6 treatments. I was feeling especially weak that day as well as sick to my stomach and light-headed. Each time I went to the bathroom, I felt as though I might pass out. Mid-morning, it actually happened. I was home alone, had finished in the bathroom and was headed back to bed when everything went yellow. I'm not sure, but I think I hit the floor and burned my face on the carpet, because I sported a nasty scrape and bruise for several weeks thereafter. Sometime later, I awoke in bed, not really sure how I got there. Around lunchtime, I talked to Danny on the phone and let him know I had passed out, but he wasn't terribly alarmed until he came home later and saw my face. He called the doctor, who instructed him to take me to the emergency room (NO!!!) to be checked out. I had never been to the ER before, but none of the stories I had heard were good ones, and I wasn't sure I could sit in a wheelchair for hours on end until they got around to me. Not the case...I checked in, was immediately wheeled to an exam room, then to a holding room then had a CT scan, then had my stomach aspirated all within a very short amount of time. It was determined that I was malnourished, dehydrated and in very bad shape, so I was admitted for 11 days. During that time, I became neutrapenic, which meant I could not have fresh fruits, vegetables, or pepper, and could not be around fresh flowers. Visitors had to wash their hands before coming in my hospital room and had I gotten sick with something as simple as the common cold, it would have been very bad for me. I battled with platelet counts and blood counts and potassium levels and had several transfusions while there. The day finally came when I was able to go home, but I was still very weak and sick. I honestly didn't know how I would be able to report to work on August 1.
Later that month, my oncologist decided chemo wasn't worth killing me with, so he put me on a drug that had recently been approved for neuroendocrine tumors, Afinitor. After a month or so, I was doing so well on it that he had me cut the dose in half, and he also had me cut the dose of water pills in half. The worse part of Afinitor is that it made me itch like crazy, but after time, that went away.
In October I had a PET scan and was given good news that the tumor in my liver had shrunk and that one in my chest had completely disappeared. So I was rather surprised when in November, I received a call from my oncologist's office to let me know that Interventional Radiology would be contacting me about an upcoming procedure. Apparently, my oncologist had shown my liver specialist my films and it was his determination that I have a bland embolization to cut off the blood supply from the tumor in my liver. Enter Dr. McCollum. Danny and I met with him and he spoke of two tumors in my liver (I think he had the wrong films) and that bland embolization would be the best approach at this time. It's the same procedure I had done in the Spring of 2010 (chemo embolizations) except there was no chemo involved. A catheter is put into the hepatic artery up into the liver and beads are shot into the tumor to block off the blood supply, which in turn, kills the tumor. This time, the side effects were to be minimal...flu-like symptoms and lack of energy.
Danny was not at all in favor of the procedure because it was not a critical situation...it could have waited. I, however, was 100% for it because I hope to have a summer break this year to do some of the things that I haven't been able to do the past 2 summers because I was recuperating from surgery and chemo. So, this past Tuesday, Dec. 27, I went in for the procedure. I was to be there at 6 a.m. and the procedure was to be at 8 a.m. I was prepped and parked outside the procedure room when Dr. McCollum came by and said that my platelets were too low to do the procedure. So they wheeled me back to the holding area, ordered platelets and even before all of them had been absorbed, I was taken back to the procedure room and the fun began. Not being a big fan of needles in my gut, I did not respond well to the needle the doctor was numbing my hepatic artery with, to the point of a knee-jerk reaction when he touched my leg with the needle. He was not at all happy with me, but finally was able to get me to relax enough to deaden the area and proceed. Being three hours behind schedule, I just knew I would have to spend the night at the hospital, but by 5 or so, I was home. The rest of that day and the next were great...the next two not so much, but other than being tired, I'm feeling pretty good today. The Doctor said everything went really well and that if the need arises, there's a less invasive method for reducing tumors that we can do the next time (radio frequency ablation), which is actually the procedure I had requested this time, but the tumor's shape wasn't condusive to that type of procedure.
Backstepping just a little, Danny and I went to Houston November 11 for a Neuroendocrine Tumor Patient Education day at M.D. Anderson. It was very informative and exciting because of all the advancements being made in NET treatments. Unfortunately, we didn't pay much attention to the embolization or ablation procedures because we didn't think they applied to me at this point, but we still learned a lot and feel I'm on the right course of action. While there, we crammed a lot into a little amount of time. After the NET day, we headed to Galveston, but it was pitch black by the time we got there (thanks to Houston traffic), but we ate at a wonderful restaurant called "Fish Tales" and had the absolute best shrimp we've ever eaten!! We also saw a beautiful full moon in the Gulf of Mexico. On Saturday, we spent the morning/early afternoon with my cousin George and his wife Reba and watched the OSU game, then went to the Johnson Space Center. We then met up with George and Rega again and went to "T-Bone Tom's", a rustic restaurant which has been featured on "Diners, Dives and Drive-ins" (Guy Fieri) where we had another wonderful shrimp meal. Sunday morning, we got up at dark-thirty, drove home and had all afternoon to relax and get ready for the week ahead.
In closing, December 16, 2011 marked my two-year survival anniversary, for which I am most grateful. I look forward to my journey to year number three! God Bless!!
The last time I blogged, I spoke of ascites and aspiration. In total I went through the process four or five times from beginning to end before I was put on two diuretics to maintain the fluids in my body. The largest amount of fluid aspirated was 5 liters, collected by Dr. McCollum (with whom I would be reaquainted in December). Since being put on the water pills, I haven't had any problem with fluid collecting in my abdomen, but my blood counts have to be strictly monitored for kidney damage/failure from the pills.
In April, I began the first of what was to have been six chemo treatments (even though carcinoid is NOT noticeably affected by chemo) because my oncologist felt the liver tumors were becoming more aggressive and that the carcinoid may not have been as slow-growing as once believed. I called the doctor in New Orleans who suggested that chemo was not the way to go...it would offer only a 15% efficacy, and would not be worth losing my hair plus all the other side effects I would suffer. Danny and I discussed it and decided that we had too many cooks in the kitchen and we needed to pick one and go with it. We went with my oncologist here and proceeded with chemo. I admire the strong folks who are able to drive themselves to and from their treatments and who have the wherewithall to function "normally". That was not the case with me. The first round wasn't too terrible, but after the second, I began to lose my hair, so Danny shaved my head. Jessica graduated UCO on May 6 and looking (and feeling) like something the cat dragged in, I proudly attended her commencement. I never returned to school for the rest of the semester, which meant that not only was I letting my students down, but my friends had to pack up all the stuff in my room for the big move to the new high school. I felt terrible in more ways than one. I am tremendously grateful for the prayers of friends and family and for the special effort of Karen, Murphy, Tracy, Laurie, Pat, Carol and everyone else who went above and beyond mere friendship. I am truly blessed to have such wonderful friends.
June 7 rolled around, and I had completed 3 of 6 treatments. I was feeling especially weak that day as well as sick to my stomach and light-headed. Each time I went to the bathroom, I felt as though I might pass out. Mid-morning, it actually happened. I was home alone, had finished in the bathroom and was headed back to bed when everything went yellow. I'm not sure, but I think I hit the floor and burned my face on the carpet, because I sported a nasty scrape and bruise for several weeks thereafter. Sometime later, I awoke in bed, not really sure how I got there. Around lunchtime, I talked to Danny on the phone and let him know I had passed out, but he wasn't terribly alarmed until he came home later and saw my face. He called the doctor, who instructed him to take me to the emergency room (NO!!!) to be checked out. I had never been to the ER before, but none of the stories I had heard were good ones, and I wasn't sure I could sit in a wheelchair for hours on end until they got around to me. Not the case...I checked in, was immediately wheeled to an exam room, then to a holding room then had a CT scan, then had my stomach aspirated all within a very short amount of time. It was determined that I was malnourished, dehydrated and in very bad shape, so I was admitted for 11 days. During that time, I became neutrapenic, which meant I could not have fresh fruits, vegetables, or pepper, and could not be around fresh flowers. Visitors had to wash their hands before coming in my hospital room and had I gotten sick with something as simple as the common cold, it would have been very bad for me. I battled with platelet counts and blood counts and potassium levels and had several transfusions while there. The day finally came when I was able to go home, but I was still very weak and sick. I honestly didn't know how I would be able to report to work on August 1.
Later that month, my oncologist decided chemo wasn't worth killing me with, so he put me on a drug that had recently been approved for neuroendocrine tumors, Afinitor. After a month or so, I was doing so well on it that he had me cut the dose in half, and he also had me cut the dose of water pills in half. The worse part of Afinitor is that it made me itch like crazy, but after time, that went away.
In October I had a PET scan and was given good news that the tumor in my liver had shrunk and that one in my chest had completely disappeared. So I was rather surprised when in November, I received a call from my oncologist's office to let me know that Interventional Radiology would be contacting me about an upcoming procedure. Apparently, my oncologist had shown my liver specialist my films and it was his determination that I have a bland embolization to cut off the blood supply from the tumor in my liver. Enter Dr. McCollum. Danny and I met with him and he spoke of two tumors in my liver (I think he had the wrong films) and that bland embolization would be the best approach at this time. It's the same procedure I had done in the Spring of 2010 (chemo embolizations) except there was no chemo involved. A catheter is put into the hepatic artery up into the liver and beads are shot into the tumor to block off the blood supply, which in turn, kills the tumor. This time, the side effects were to be minimal...flu-like symptoms and lack of energy.
Danny was not at all in favor of the procedure because it was not a critical situation...it could have waited. I, however, was 100% for it because I hope to have a summer break this year to do some of the things that I haven't been able to do the past 2 summers because I was recuperating from surgery and chemo. So, this past Tuesday, Dec. 27, I went in for the procedure. I was to be there at 6 a.m. and the procedure was to be at 8 a.m. I was prepped and parked outside the procedure room when Dr. McCollum came by and said that my platelets were too low to do the procedure. So they wheeled me back to the holding area, ordered platelets and even before all of them had been absorbed, I was taken back to the procedure room and the fun began. Not being a big fan of needles in my gut, I did not respond well to the needle the doctor was numbing my hepatic artery with, to the point of a knee-jerk reaction when he touched my leg with the needle. He was not at all happy with me, but finally was able to get me to relax enough to deaden the area and proceed. Being three hours behind schedule, I just knew I would have to spend the night at the hospital, but by 5 or so, I was home. The rest of that day and the next were great...the next two not so much, but other than being tired, I'm feeling pretty good today. The Doctor said everything went really well and that if the need arises, there's a less invasive method for reducing tumors that we can do the next time (radio frequency ablation), which is actually the procedure I had requested this time, but the tumor's shape wasn't condusive to that type of procedure.
Backstepping just a little, Danny and I went to Houston November 11 for a Neuroendocrine Tumor Patient Education day at M.D. Anderson. It was very informative and exciting because of all the advancements being made in NET treatments. Unfortunately, we didn't pay much attention to the embolization or ablation procedures because we didn't think they applied to me at this point, but we still learned a lot and feel I'm on the right course of action. While there, we crammed a lot into a little amount of time. After the NET day, we headed to Galveston, but it was pitch black by the time we got there (thanks to Houston traffic), but we ate at a wonderful restaurant called "Fish Tales" and had the absolute best shrimp we've ever eaten!! We also saw a beautiful full moon in the Gulf of Mexico. On Saturday, we spent the morning/early afternoon with my cousin George and his wife Reba and watched the OSU game, then went to the Johnson Space Center. We then met up with George and Rega again and went to "T-Bone Tom's", a rustic restaurant which has been featured on "Diners, Dives and Drive-ins" (Guy Fieri) where we had another wonderful shrimp meal. Sunday morning, we got up at dark-thirty, drove home and had all afternoon to relax and get ready for the week ahead.
In closing, December 16, 2011 marked my two-year survival anniversary, for which I am most grateful. I look forward to my journey to year number three! God Bless!!
Monday, April 4, 2011
In Like a Lion
After suffering from bloating and discomfort for 3 months, I had an appointment with my primary care physician on March 3. He diagnosed me with "Ascites", which is an abnormal collection of fluid in the abdomen, and is most often caused by chronic liver disease. He sent me to radiology for an ultrasound and it was estimated that I had 1-2 liters of fluid on my abdomen. He then put in a rush request for a paracentesis (aspiration of the fluid), and finally on March 9, the procedure was performed. It wasn't a particularly bad experience except for the needle in my gut to deaden the area. It was the most excruciating pain I've ever experienced. Once that was done, the rest of the procedure was a breeze and only took about 20 minutes to collect the 2.5 quarts of fluid which had collected.
When I asked the doctor what caused the fluid to build up, he said it was due to my carcinoid, but the info Danny found online pointed to liver problems, with cancer as a lesser cause. I asked if the fluid was likely to build up again, and he said it would. Little did I know that it would only take 3 weeks...I had the second procedure done today after school...the needle still hurt like crazy and I was so bloated and in so much pain that I just knew he would draw 3 quarts, but once again, it was 2.5 quarts. Right now I'm feeling a lot better. It was so bad this morning that I couldn't button my slacks...I had to wear wind pants to school!
In the meantime, Jessica turned 22 on the 13th, the day she left for Orlando on UCO's alternate spring break. They helped out at an organization that helps terminally ill children realize a wish. That week, I had an octreotide scan and various other lab work to check on the status of my cancer. When I met with my oncologist on the 25th to find out the results, I was blindsided with news that I had not expected...
All my tests came back good...nothing showed up on the octreotide scan, which according to my oncologist is somewhat a false positive. He suggested that the carcinoid may not have been releasing hormones which are detected by the scan. Further, the rest of the lab work indicated no change, which again, might mean that no hormones were being released and were not detected.
Due to the fluid building up in my abdomen and the results of the scans and tests, my oncologist feels that my carcinoid may not be the "slow-growing" kind, but rather a more aggressive type and he said I need chemo. Now, keep in mind that carcinoid is not typically affected by chemo, but in a state of shock, I went through the motions of setting up an appointment to begin treatment today. This diagnosis was made without the benefit of a PET scan, but he was to set that up for last week so the results would be in before chemo began.
My brother-in-law has cancer and had fluid build-up in his abdomen as well, and had to go through chemo, so Danny called his sister to get the scoop. She couldn't believe that all this had been set up without having done a PET scan. So we began to have our doubts. I had gotten copies of all the scan reports from my oncologist and faxed them to New Orleans along with a letter explaining the situation. The next business day, the doctor from New Orleans called me, and said that mine is a well-defined tumor that will not respond to chemo. He also suggested I make an appointment with my surgeon (Dr. Boudreaux) and the oncologist down there to get their opinions. Further, he refused to call my oncologist here to discuss my case because he tends to make people mad. (Not too impressed with that comment.)
Danny and I let it ride for about a week, and I had the epiphany that I do in fact need to go to New Orleans for an appointment. I called today and spoke with the nurse who is the doctor liason and explained that Dr. Woltering told me I needed to make an appointment with Dr. Boudreaux and the oncologist to discuss the fluid in my abdomen and my treatment. For the 2nd time in my life, a doctor's office refused to make an appointment for me. She said that there is a doctors meeting tomorrow morning and that she will bring up my case so they can discuss it. Also, I am to call her Wednesday after my PET scan (it finally got scheduled) with the name of the chemo the doctor here wants to use. Once I have the latest reports, I'm to send them down there to be looked at and they'll take it from there. She also suggested a water pill to help eliminate the build-up, but my oncologist didn't want me to take water pills (though I don't remember why---I was in a bit of shock when he gave me that bit of info).
I feel like I'm floating in space with nowhere to go and just don't know what to do. I want to know the cause of the Ascites so that can be fixed. I don't think I need chemo, but of course, I'm no expert...just someone going off her gut instinct. If it weren't for the Ascites, I would be feeling pretty great. Chemo scares me (even though Danny and I went the day after my diagnosis and bought 2 wigs) and I just don't want to go through it if it's not going to help me.
In closing, please say a prayer for me. I appreciate you!
When I asked the doctor what caused the fluid to build up, he said it was due to my carcinoid, but the info Danny found online pointed to liver problems, with cancer as a lesser cause. I asked if the fluid was likely to build up again, and he said it would. Little did I know that it would only take 3 weeks...I had the second procedure done today after school...the needle still hurt like crazy and I was so bloated and in so much pain that I just knew he would draw 3 quarts, but once again, it was 2.5 quarts. Right now I'm feeling a lot better. It was so bad this morning that I couldn't button my slacks...I had to wear wind pants to school!
In the meantime, Jessica turned 22 on the 13th, the day she left for Orlando on UCO's alternate spring break. They helped out at an organization that helps terminally ill children realize a wish. That week, I had an octreotide scan and various other lab work to check on the status of my cancer. When I met with my oncologist on the 25th to find out the results, I was blindsided with news that I had not expected...
All my tests came back good...nothing showed up on the octreotide scan, which according to my oncologist is somewhat a false positive. He suggested that the carcinoid may not have been releasing hormones which are detected by the scan. Further, the rest of the lab work indicated no change, which again, might mean that no hormones were being released and were not detected.
Due to the fluid building up in my abdomen and the results of the scans and tests, my oncologist feels that my carcinoid may not be the "slow-growing" kind, but rather a more aggressive type and he said I need chemo. Now, keep in mind that carcinoid is not typically affected by chemo, but in a state of shock, I went through the motions of setting up an appointment to begin treatment today. This diagnosis was made without the benefit of a PET scan, but he was to set that up for last week so the results would be in before chemo began.
My brother-in-law has cancer and had fluid build-up in his abdomen as well, and had to go through chemo, so Danny called his sister to get the scoop. She couldn't believe that all this had been set up without having done a PET scan. So we began to have our doubts. I had gotten copies of all the scan reports from my oncologist and faxed them to New Orleans along with a letter explaining the situation. The next business day, the doctor from New Orleans called me, and said that mine is a well-defined tumor that will not respond to chemo. He also suggested I make an appointment with my surgeon (Dr. Boudreaux) and the oncologist down there to get their opinions. Further, he refused to call my oncologist here to discuss my case because he tends to make people mad. (Not too impressed with that comment.)
Danny and I let it ride for about a week, and I had the epiphany that I do in fact need to go to New Orleans for an appointment. I called today and spoke with the nurse who is the doctor liason and explained that Dr. Woltering told me I needed to make an appointment with Dr. Boudreaux and the oncologist to discuss the fluid in my abdomen and my treatment. For the 2nd time in my life, a doctor's office refused to make an appointment for me. She said that there is a doctors meeting tomorrow morning and that she will bring up my case so they can discuss it. Also, I am to call her Wednesday after my PET scan (it finally got scheduled) with the name of the chemo the doctor here wants to use. Once I have the latest reports, I'm to send them down there to be looked at and they'll take it from there. She also suggested a water pill to help eliminate the build-up, but my oncologist didn't want me to take water pills (though I don't remember why---I was in a bit of shock when he gave me that bit of info).
I feel like I'm floating in space with nowhere to go and just don't know what to do. I want to know the cause of the Ascites so that can be fixed. I don't think I need chemo, but of course, I'm no expert...just someone going off her gut instinct. If it weren't for the Ascites, I would be feeling pretty great. Chemo scares me (even though Danny and I went the day after my diagnosis and bought 2 wigs) and I just don't want to go through it if it's not going to help me.
In closing, please say a prayer for me. I appreciate you!
Thursday, February 10, 2011
Tummy Troubles
So the CT scan I had done ($7,000 worth!!) on January 17 turned out OK. There were no changes since the last scan back in October. Good news, yes, but the bad news is that my stomach was still hurting and no one seemed to have a clue as to why. I finally stumbled upon caffeine as being a trigger, so I stopped drinking coffee, and that helped somewhat, but I noticed that by the end of the week (when we've worked full weeks) it was hurting almost as badly as before. So it would seem that the major culprit is stress. The snow days have really been a blessing, but now it's back to the real world, and most likely the discomfort.
My oncologist's nurse called me at the end of the day last Friday (Feb. 4) to see how I was doing (which impressed me), and suggested I might go see a gastric specialist if things don't improve. That was already in my thoughts...I just hadn't gotten around to making the phone call.
My oncologist's nurse called me at the end of the day last Friday (Feb. 4) to see how I was doing (which impressed me), and suggested I might go see a gastric specialist if things don't improve. That was already in my thoughts...I just hadn't gotten around to making the phone call.
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