My procedure has been scheduled for Tuesday, January 26 at 12:30 p.m. at Baptist. I'm ready to get the show on the road, and am planning to be back at school on the following Monday...I have to be...I don't have any lesson plans ready beyond Friday the 29th!! :) (It's not procrastination...it's taking one step at a time.)
The Sandostatin is still working and the flushing has really decreased. My stomach still hurts, but my main issue seems to be allergies right now. Some of my students said I should sue my doctor for not having diagnosed this disease, since I've complained to her about my stomach problems for the past 5 years. I stressed to them the importance of pushing a doctor to dig a little deeper instead of whipping out the prescription pad or blaming symptoms on stress. I regret that I didn't demand an X-ray or CT scan, but I'm glad Dr. La ordered the ultrasound which found the mass on my left ovary. I would not have left his office that day in November had he not done something. The pain was excrutiating by then.
Thank you Alisha, Kyle/Shannon and Brooke for your very nice comments! I'm new at this and can't figure out how to reply to you (if it's even possible), but please know that your kind words were very uplifting.
Tuesday, January 19, 2010
Monday, January 18, 2010
Radiologist Consulation: January 15, 2010
(My 54th birthday) I had a consult appointment with my radiologist, Dr. Le, and Danny and I both were really impressed with him. He spent nearly an hour with us, very clearly explaining the chemoembolization procedure which I will soon undergo, and answered many questions we had about my carcinoid. He even showed us the film from my Octreotide scan, and it was interesting to see the tumors.
So...chemoembolization is a combination of delivering chemo to the tumors in my liver and then trapping it in the blood vessels which supply blood to the tumors. The chemo will be injected through my hepatic artery via a catheter (ouch!) as will the embolic agents, which block the chemo in the blood vessels. The procedure takes approximately 90 minutes and I'll be in recovery for 6-8 hours. I will spend at least one night in the hospital, and should be able to resume "normal" activities within a week.
Unlike our presumption that this would be a one-time procedure, chemoembolization is about a 6-week process. The first procedure will target one lobe of the liver, then 2 weeks later, the second lobe will be treated, then 2 weeks later, the entire liver will be treated. I'm certainly not looking forward to all the IV's and catheters, and if more tumors metastasize, the procedure will have to be repeated in 10-14 months.
Reactions to the chemo may include nausea and hair loss, but since the most of the chemo will be trapped in my liver, the reactions should be mild. I am confident they will be non-existent and my hair will stay intact.
So...chemoembolization is a combination of delivering chemo to the tumors in my liver and then trapping it in the blood vessels which supply blood to the tumors. The chemo will be injected through my hepatic artery via a catheter (ouch!) as will the embolic agents, which block the chemo in the blood vessels. The procedure takes approximately 90 minutes and I'll be in recovery for 6-8 hours. I will spend at least one night in the hospital, and should be able to resume "normal" activities within a week.
Unlike our presumption that this would be a one-time procedure, chemoembolization is about a 6-week process. The first procedure will target one lobe of the liver, then 2 weeks later, the second lobe will be treated, then 2 weeks later, the entire liver will be treated. I'm certainly not looking forward to all the IV's and catheters, and if more tumors metastasize, the procedure will have to be repeated in 10-14 months.
Reactions to the chemo may include nausea and hair loss, but since the most of the chemo will be trapped in my liver, the reactions should be mild. I am confident they will be non-existent and my hair will stay intact.
First Sandostatin Injection: January 11, 2010
I got the first injection of Sandostatin LAR on January 11, after quite an ordeal at the pharmacy. My friend, Karen, went to the doctor's office with me for moral support because I didn't really know what to expect. The week prior, (nurse) Sandy said that small, sandy particles will be injected into my hip, which was a little unsettling. The injection wasn't bad at all, and before I knew it, it was over. The sandy particles are actually time-release particles that release throughout the month to keep the hormone symptoms under control.
Five minutes after the injection, I felt a little dizzy and within 10 minutes, a little woozy, but I made it home in one piece. That evening, I noticed a marked decrease in flushing and felt really good until I went to bed that evening. I had a painful burning in my stomach similar to what I have felt in the past when taking antibiotics. Fortunately, the feeling didn't last too long, and the next day I felt better than I had in quite some time.
The injection site has become increasingly tender throughout the week, but is not nearly as uncomfortable as the flushing incidents. The injection will be alternated between hips each month, and I'm curious to see what happens to the tenderness as time progresses. The next injection will be on February 11.
Five minutes after the injection, I felt a little dizzy and within 10 minutes, a little woozy, but I made it home in one piece. That evening, I noticed a marked decrease in flushing and felt really good until I went to bed that evening. I had a painful burning in my stomach similar to what I have felt in the past when taking antibiotics. Fortunately, the feeling didn't last too long, and the next day I felt better than I had in quite some time.
The injection site has become increasingly tender throughout the week, but is not nearly as uncomfortable as the flushing incidents. The injection will be alternated between hips each month, and I'm curious to see what happens to the tenderness as time progresses. The next injection will be on February 11.
Sunday, January 17, 2010
"Solutions are not the answer." - Richard Nixon (January 6, 2010)
Danny and Jessica picked me up at school for my oncologist appointment on Wednesday, January 6. The day I had looked forward to had finally arrived, and I got scared. Really scared. Was I really ready for the final diagnosis? After having spent a week wanting to find out, anxious to find out, the reality of it hit me like a ton of bricks. And in we went...
The results of all the tests and scans showed that I do have carcinoid and carcinoid syndrome, and nothing was found other than the tumor in the mesentery and the lesions on my liver. Even the mass on my ovary is unrelated, for which I am grateful, but the ovary will still need to be removed at a later date.
The course of action for my treatment includes a monthly shot of Sandostatin LAR, 30 mg, (octreotide) for the rest of my life to counteract my flushing. The shot costs $4,000, and according to Dr. Ch's insurance person, my portion each month will cost $650. She gave me information about a foundation called the Health Well Foundation which provides assistance to persons who qualify financially. One of the application requirements is a letter or form from the insurance company stating that the treatment is covered by my insurance. In my quest to obtain the letter/form, I stumbled on a subsidiary company which provides specialty medicines at a reduced cost. Sandostatin is covered under the prescription portion of my insurance, so I should be able to get it through the subsidiary company via mail order for $50 a month. Much better than $650 a month!! I'm so grateful to Amy at Health Choice for telling me about it!
Within the next 3 weeks I will have to be admitted to the hospital for a hepatic artery embolization, but Dr. Ch could not give us any details about the procedure...we will have a consultation with the radiologist within the week. She does not feel I need to have the mesentery tumor de-bulked (reduced) at this time, but I'm not sure why. I will address that later because I'm eating this elephant one bite at a time.
So, as bleak as the diagnosis is, I'm happy and relieved it's not any worse. Danny and Jessica are, too. I can't imagine what it must feel like to be 20 and find out your mom has cancer...
The results of all the tests and scans showed that I do have carcinoid and carcinoid syndrome, and nothing was found other than the tumor in the mesentery and the lesions on my liver. Even the mass on my ovary is unrelated, for which I am grateful, but the ovary will still need to be removed at a later date.
The course of action for my treatment includes a monthly shot of Sandostatin LAR, 30 mg, (octreotide) for the rest of my life to counteract my flushing. The shot costs $4,000, and according to Dr. Ch's insurance person, my portion each month will cost $650. She gave me information about a foundation called the Health Well Foundation which provides assistance to persons who qualify financially. One of the application requirements is a letter or form from the insurance company stating that the treatment is covered by my insurance. In my quest to obtain the letter/form, I stumbled on a subsidiary company which provides specialty medicines at a reduced cost. Sandostatin is covered under the prescription portion of my insurance, so I should be able to get it through the subsidiary company via mail order for $50 a month. Much better than $650 a month!! I'm so grateful to Amy at Health Choice for telling me about it!
Within the next 3 weeks I will have to be admitted to the hospital for a hepatic artery embolization, but Dr. Ch could not give us any details about the procedure...we will have a consultation with the radiologist within the week. She does not feel I need to have the mesentery tumor de-bulked (reduced) at this time, but I'm not sure why. I will address that later because I'm eating this elephant one bite at a time.
So, as bleak as the diagnosis is, I'm happy and relieved it's not any worse. Danny and Jessica are, too. I can't imagine what it must feel like to be 20 and find out your mom has cancer...
Saturday, January 16, 2010
"What we see depends mainly on what we look for." John Lubbock (December 16-31, 2009)
The morning of Wednesday, December 16, I went to the hospital for an abdominal CT scan ordered by my ob/gyn as a pre-op procedure for the removal of my left ovary. Surgery was scheduled for Monday, December 21. Following the CT scan, I met with my ob/gyn for a pre-op consultation regarding the removal of my ovary, which has a 2-inch mass on it. "Dr. La" (ob/gyn) gravely gave me the news that my lower torso ailments were no longer of a gynecological nature...in addition to the mass on my ovary, something is wrapped around my colon,I have multiple lesions on my liver and something in my small bowel. He apologized for being blunt, but wanted me to know that things do not look good. Stunned, I asked him what I should do, and he said I should see a surgeon. He made a phone call to a general surgeon, "Dr. T", and asked her to see me immediately. Fortunately, she was able to see me that morning. Before I left his office, he asked me a key question...are my hot flashes accompanied by red flushing on my face? They are.
I numbly sat in Dr. T's office, filling out the required paperwork, alone (I saw no need to have family come with me for a routine procedure) and crying, thinking that my parents didn't deserve to lose another child (my brother died at the age of 3 from a heart condition) and that I wasn't ready to die and leave my husband and daughter. Two of Dr. La's staff members came to check on me and offer support, and later Dr. La came by as well. I think they were as shocked as I.
I found Dr. T to be very caring and compassionate and she diagnosed me with carcinoid (a very slow-growing cancer, which originated in my mesentery) and carcinoid syndrome (the cancer metasized to my liver and produces hormones which cause extreme hot flashes with a red face, called "flushing"). Because the cancer is slow-growing, Dr. T told me to relax. It had taken the carcinoid at least 5 years to get to its current state (that's how long I had complained to my primary care physician about having stomach problems). She also said that I would have to go through a series of tests to confirm her diagnosis, and that surgery may or may not be an option for me because of the size and location of the tumor in my mesentery.
Dr. T referred me to an oncologist who offices in OKC, but comes to Yukon every Wednesday afternoon. As luck would have it, December 16 was on a Wednesday, so I met "Dr. Ch" later that afternoon. It wouldn't have mattered...I would have driven to the ends of the earth for that appointment...
My husband, Danny, was in Ft. Worth that day, so I had to give him the good news (no surgery on Monday) and the bad news (I have cancer) over the phone. I called my daughter, Jessica, to come home from college to take my parents to a doctor's appointment which was scheduled for the same time as my oncologist appointment. When she got home and I told her about my disease, she took over my online research, and decided it might be a good idea for her to go with me to my appointment. I made the difficult phone call to tell Mom that I wouldn't be able to take them to Dad's appointment because I had an appointment at the same time due to what the CT scan showed that morning. "Is it cancer?" she asked and I dodged the question by telling her that it's possibly carcinoid.
Jessica and I met Dr. Ch at 4:30 that afternoon, and as her nurse took my vitals, she rambled on about this and that and how chemo is done right there in the office and so on. Chemo. This journey began with a mass on my left ovary and now I'm hearing about chemo??!!
Dr. Ch was very informative and told us the same information we had found in our research that afternoon. She explained the tests and scans that would need to be done within the next few days to confirm the diagnosis. Testing began December 20-21 with a 24-hour urine test called "5-HIAA". The test checks for an excess amount of a substance made by the body when it breaks down serotonin. An excess amount of that substance could mean that the body is processing extra serotonin, which is commonly excreted by carcinoid tumors. The results of my 5-HIAA test indicated that my hydroxyindoleacetic acid level is high.
December 23, I went to Baptist Medical Center in OKC to have a liver biopsy. Hating needles and having to have an IV, I became a pin cushion with bruises that lasted several days. It seems you can tell by looking who will be gentle and who will be a vampire, and I definitely had 2 Victorias that day!! Finally on the 7th or 8th try, the nurse was successful, and the biopsy went well, except, of course for the diagnosis of carcinoid tumor which had metastasized. Synaptophysin and chromogranin both tested positive, and the measurement of chromogranin has been referred to as the "gold standard" for confirming carcinoid. I'm not sure what synaptophysin is.
December 29-31, I had an octreotide scan to confirm and precisely locate the tumors. The 29th involved an (IV) injection of octreotide, and the technologist decided it might be wise if I lay down for the injection (after my reaction to the news of an IV, along with the bruises on my arms and hands from the week before). The technologist was very kind and distracted me with pleasant conversation, and before I knew it, he had injected the octreotide. Octreotide attaches itself to carcinoid tumors, and during a scan 24 hours later, the tumors lit up, allowing a diagnosis of their location(s). In addition, octreotide is injected in patients with carcinoid syndrome to counteract the symptoms caused by the hormones produced by the tumors. I noticed relief of my symptoms from the octreotide which had been injected for the scan, and that was nice.
So, with all the tests and scans out of the way, I spent the rest of Christmas break anticipating my next oncology appointment on Jan. 6, and hoping I wasn't full of tumors. I wasn't being negative, just trying to be prepared.
I numbly sat in Dr. T's office, filling out the required paperwork, alone (I saw no need to have family come with me for a routine procedure) and crying, thinking that my parents didn't deserve to lose another child (my brother died at the age of 3 from a heart condition) and that I wasn't ready to die and leave my husband and daughter. Two of Dr. La's staff members came to check on me and offer support, and later Dr. La came by as well. I think they were as shocked as I.
I found Dr. T to be very caring and compassionate and she diagnosed me with carcinoid (a very slow-growing cancer, which originated in my mesentery) and carcinoid syndrome (the cancer metasized to my liver and produces hormones which cause extreme hot flashes with a red face, called "flushing"). Because the cancer is slow-growing, Dr. T told me to relax. It had taken the carcinoid at least 5 years to get to its current state (that's how long I had complained to my primary care physician about having stomach problems). She also said that I would have to go through a series of tests to confirm her diagnosis, and that surgery may or may not be an option for me because of the size and location of the tumor in my mesentery.
Dr. T referred me to an oncologist who offices in OKC, but comes to Yukon every Wednesday afternoon. As luck would have it, December 16 was on a Wednesday, so I met "Dr. Ch" later that afternoon. It wouldn't have mattered...I would have driven to the ends of the earth for that appointment...
My husband, Danny, was in Ft. Worth that day, so I had to give him the good news (no surgery on Monday) and the bad news (I have cancer) over the phone. I called my daughter, Jessica, to come home from college to take my parents to a doctor's appointment which was scheduled for the same time as my oncologist appointment. When she got home and I told her about my disease, she took over my online research, and decided it might be a good idea for her to go with me to my appointment. I made the difficult phone call to tell Mom that I wouldn't be able to take them to Dad's appointment because I had an appointment at the same time due to what the CT scan showed that morning. "Is it cancer?" she asked and I dodged the question by telling her that it's possibly carcinoid.
Jessica and I met Dr. Ch at 4:30 that afternoon, and as her nurse took my vitals, she rambled on about this and that and how chemo is done right there in the office and so on. Chemo. This journey began with a mass on my left ovary and now I'm hearing about chemo??!!
Dr. Ch was very informative and told us the same information we had found in our research that afternoon. She explained the tests and scans that would need to be done within the next few days to confirm the diagnosis. Testing began December 20-21 with a 24-hour urine test called "5-HIAA". The test checks for an excess amount of a substance made by the body when it breaks down serotonin. An excess amount of that substance could mean that the body is processing extra serotonin, which is commonly excreted by carcinoid tumors. The results of my 5-HIAA test indicated that my hydroxyindoleacetic acid level is high.
December 23, I went to Baptist Medical Center in OKC to have a liver biopsy. Hating needles and having to have an IV, I became a pin cushion with bruises that lasted several days. It seems you can tell by looking who will be gentle and who will be a vampire, and I definitely had 2 Victorias that day!! Finally on the 7th or 8th try, the nurse was successful, and the biopsy went well, except, of course for the diagnosis of carcinoid tumor which had metastasized. Synaptophysin and chromogranin both tested positive, and the measurement of chromogranin has been referred to as the "gold standard" for confirming carcinoid. I'm not sure what synaptophysin is.
December 29-31, I had an octreotide scan to confirm and precisely locate the tumors. The 29th involved an (IV) injection of octreotide, and the technologist decided it might be wise if I lay down for the injection (after my reaction to the news of an IV, along with the bruises on my arms and hands from the week before). The technologist was very kind and distracted me with pleasant conversation, and before I knew it, he had injected the octreotide. Octreotide attaches itself to carcinoid tumors, and during a scan 24 hours later, the tumors lit up, allowing a diagnosis of their location(s). In addition, octreotide is injected in patients with carcinoid syndrome to counteract the symptoms caused by the hormones produced by the tumors. I noticed relief of my symptoms from the octreotide which had been injected for the scan, and that was nice.
So, with all the tests and scans out of the way, I spent the rest of Christmas break anticipating my next oncology appointment on Jan. 6, and hoping I wasn't full of tumors. I wasn't being negative, just trying to be prepared.
Subscribe to:
Posts (Atom)