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!!
Saturday, December 31, 2011
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.
Saturday, January 15, 2011
Today I'm Gonna Party Like it's my Birthday!
I can't believe I havn't blogged since November, but no news is good news!! Not much has been happening other than I reached an important milestone on December 16...one year of survival. I truly feel blessed and am extremely grateful. I have to admit, though, that I constantly wait for the other shoe to fall, and I can't forget my oncologist's statement that I may not live until 60. As of today, that's five years. I don't dwell on it by any means, but the seed has been planted...
Since my surgery, I've had a really sore stomach (it hurts to inhale deeply) and sometimes it gets hard as a rock. I've watched my diet closely (only tan food and no raw vegetables, Dr. Pepper or sweets) and it seems to make no difference...the pain is still there. Needless to say, I'm gradually adding back into my diet some of the things I have really missed. I also noticed a bump on the right side of my navel (where I've had a pain since surgery and which every doctor I told quickly blew off). Last month my family doctor told me to take GasX for my stomach issues, but DID diagnose a hernia near my navel. It's really small right now, so no surgery in my immediate future, but eventually it will have to be dealt with. It doesn't hurt...just looks gross.
Meanwhile, the pain became so excruciating that I called my oncologist's office to schedule an appointment and (this has NEVER happened to me before) the person I spoke with would not schedule me!!! I'm already scheduled for the end of March, but I cannot wait that long. I explained to the nice lady the issues I was having and she relayed the info to the nurse. When the nurse called me back, her first question was whether I was taking pain pills. No...I have to be able to drive and work!!! So that was the solution...prescribe pain pills for me and schedule a CT scan to see what's going on. At least I AM scheduled for a CT scan and hopefully it will give the doctor an idea of why I'm in so much pain. Fortunately, they were able to schedule it for this Monday and we're out of school, so I don't have to worry about a sub and lesson plans.
Other than my stomach problems, everything else is going well. I had an absolute melt-down Thursday night, which I really needed to release the stress which had been building for a while. I'm supposed to avoid stress and try really hard to do so, but it comes with the territory when one is a teacher...it would certainly help if parents would take ownership of their students and their educations rather than expecting teachers to do it all. We are certainly thankful for the parents who do!!! :)
So that's my news for awhile. I am 55 today, so will "enjoy" seeing my age on speed limit signs for the next year, and oh yeah...I'm eligible for SENIOR CITIZEN DISCOUNTS at some places!!! Can't say I'm very excited about that "perk" just yet...
Since my surgery, I've had a really sore stomach (it hurts to inhale deeply) and sometimes it gets hard as a rock. I've watched my diet closely (only tan food and no raw vegetables, Dr. Pepper or sweets) and it seems to make no difference...the pain is still there. Needless to say, I'm gradually adding back into my diet some of the things I have really missed. I also noticed a bump on the right side of my navel (where I've had a pain since surgery and which every doctor I told quickly blew off). Last month my family doctor told me to take GasX for my stomach issues, but DID diagnose a hernia near my navel. It's really small right now, so no surgery in my immediate future, but eventually it will have to be dealt with. It doesn't hurt...just looks gross.
Meanwhile, the pain became so excruciating that I called my oncologist's office to schedule an appointment and (this has NEVER happened to me before) the person I spoke with would not schedule me!!! I'm already scheduled for the end of March, but I cannot wait that long. I explained to the nice lady the issues I was having and she relayed the info to the nurse. When the nurse called me back, her first question was whether I was taking pain pills. No...I have to be able to drive and work!!! So that was the solution...prescribe pain pills for me and schedule a CT scan to see what's going on. At least I AM scheduled for a CT scan and hopefully it will give the doctor an idea of why I'm in so much pain. Fortunately, they were able to schedule it for this Monday and we're out of school, so I don't have to worry about a sub and lesson plans.
Other than my stomach problems, everything else is going well. I had an absolute melt-down Thursday night, which I really needed to release the stress which had been building for a while. I'm supposed to avoid stress and try really hard to do so, but it comes with the territory when one is a teacher...it would certainly help if parents would take ownership of their students and their educations rather than expecting teachers to do it all. We are certainly thankful for the parents who do!!! :)
So that's my news for awhile. I am 55 today, so will "enjoy" seeing my age on speed limit signs for the next year, and oh yeah...I'm eligible for SENIOR CITIZEN DISCOUNTS at some places!!! Can't say I'm very excited about that "perk" just yet...
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