From Sharon -
As I reported with the last blog entry, the day following Ruth's chemoembolization procedure at Chapel Hill, she felt great. Two days after, however, reality hit hard. Ruth has suffered from shoulder and right side pain (where her liver is located), emotional swings, and fatigue. Gradually, most of that has subsided, improving each day. The pain in her shoulder still lingers, making it difficult to sleep at night. Daily naps have become a necessity. She can now eat a full meal, her blood tests indicate that the treatment has had the desired affect on her cancer, and she has gained back two of the three pounds she lost immediately following treatment.
The congregation of Ruth's former church, Centenary United Methodist, created and presented a prayer shawl to her. It's an incredible symbol of protection around her shoulders and was a tremendous emotional boost. Thank you!
Our gratitude also goes out to the people of Trinity United Church who have provided healthy meals and snack foods during the past couple of weeks. People always ask if they can do anything to help and the congregation really came through when I emailed Pastor Charlene Pierce Guider with a suggestion. John appreciated the break from cooking and Ruth enjoyed the variety of choices as her appetite returned.
Unfortunately, Ruth found out that one of side effects of the cancer is pulmonary hypertension (high blood pressure in her lungs), which is related to the tricuspid regurgitation (faulty valve) in her heart. It doesn't appear to be serious though and after the testing done by the pulmonologist, she was told that she also has asthma. This might explain why her voice doesn't project very loudly. The asthma apparently is NOT related to the cancer. So she now has an inhaler and is training to run a 5K. Kidding. Have you ever seen Ruth run? It's not pretty.
I'll sign off now before I get in trouble......Sharon
Tuesday, September 21, 2010
Friday, September 10, 2010
One Down, One to Go
From Sharon -
The chemoembolization procedure went according to plan at UNC Cancer Hospital. From the National Cancer Institute website, this is basically what they did:
Chemoembolization of the hepatic artery is a type of regional chemotherapy that may be used to treat a gastrointestinal carcinoid tumor that has spread to the liver. The anticancer drug is injected into the hepatic artery through a catheter (thin tube). The drug is mixed with a substance that embolizes (blocks) the artery, cutting off blood flow to the tumor. Most of the anticancer drug is trapped near the tumor and only a small amount of the drug reaches other parts of the body. The blockage may be temporary or permanent, depending on the substance used to block the artery. The tumor is prevented from getting the oxygen and nutrients it needs to grow. The liver continues to receive blood from the hepatic portal vein, which carries blood from the stomach and intestine.
I spoke to Mom (Ruth to most of you) as she and John were driving back from Chapel Hill today. Although she had some discomfort and nausea last night, the worst part was having to change rooms a couple of times during the night. An overflowing toilet was one of the reasons she had to move. Too bad hospitals don't give discounts or a free night's stay.
Mom sounded bright and chipper on the phone. Her biggest concern is her total loss of appetite. She really doesn't feel like eating but says she will eat anyway. She has no nausea or pain today. If anyone has any great ideas for regaining an appetite, please let her know. I have a feeling it will return gradually as the effects of the chemoembolization wear off. At least she should be able to get some rest at home tonight.
Mom goes back for a check up in two weeks. The other side of her liver will be treated in November.
The chemoembolization procedure went according to plan at UNC Cancer Hospital. From the National Cancer Institute website, this is basically what they did:
Chemoembolization of the hepatic artery is a type of regional chemotherapy that may be used to treat a gastrointestinal carcinoid tumor that has spread to the liver. The anticancer drug is injected into the hepatic artery through a catheter (thin tube). The drug is mixed with a substance that embolizes (blocks) the artery, cutting off blood flow to the tumor. Most of the anticancer drug is trapped near the tumor and only a small amount of the drug reaches other parts of the body. The blockage may be temporary or permanent, depending on the substance used to block the artery. The tumor is prevented from getting the oxygen and nutrients it needs to grow. The liver continues to receive blood from the hepatic portal vein, which carries blood from the stomach and intestine.
I spoke to Mom (Ruth to most of you) as she and John were driving back from Chapel Hill today. Although she had some discomfort and nausea last night, the worst part was having to change rooms a couple of times during the night. An overflowing toilet was one of the reasons she had to move. Too bad hospitals don't give discounts or a free night's stay.
Mom sounded bright and chipper on the phone. Her biggest concern is her total loss of appetite. She really doesn't feel like eating but says she will eat anyway. She has no nausea or pain today. If anyone has any great ideas for regaining an appetite, please let her know. I have a feeling it will return gradually as the effects of the chemoembolization wear off. At least she should be able to get some rest at home tonight.
Mom goes back for a check up in two weeks. The other side of her liver will be treated in November.
Friday, September 3, 2010
Introduction - Everything I Never Wanted to Learn About Cancer
Written by Sharon as told by Ruth.
This blog is being started in order to inform interested parties about my newly discovered cancer. I have Gastrointestinal Carcinoid Cancer which has metastasized to my liver.
On August 20th, my doctor told me the biopsy of the lesions on my liver confirmed that I had cancer. Looking back, my symptoms started in November 2008 when I was playing the organ for the eleven o'clock service at Centenary United Methodist Church in New Bern, North Carolina. I felt my face turn red for no apparent reason. This is one of the major symptoms of gastrointestinal carcinoid cancer, called Carcinoid Syndrome. Good sources for more information online are Cancer.org, cancer.gov and carcinoid.org. My other symptoms have been swollen legs and ankles, blisters on my legs, loss of appetite and weight. Each symptom was treated separately by my primary care doctor, the loss of appetite was blamed on the antibiotics I had been taking for MRSA, a type of staph infection I had last fall.
After my daughter Sharon expressed her concern over my weight loss in June, I went back to my doctor and insisted that something was wrong. He ran some blood tests and everything was normal. I went back later, still bothered by my lack of appetite. I had been weighing myself daily, relieved if my weight didn't drop. Hubby John was trying his best to feed me and I tried to eat, but couldn't eat very much at a time. I felt like I had to speak up louder to get my doctor's attention and told him again that something was wrong; I shouldn't be losing weight. He listened better this time and ordered a CT scan done of my lower abdomen which revealed several lesions on my liver. A biopsy done a week later revealed the lesions to be malignant, but a secondary cancer. Primary liver cancer is usually seen in people who have had Hepatitis or alcoholics. The cancer cells indicated that the cancer had metastasized from somewhere else in my body to the liver. But where had it started?
Apparently my cancer is somewhat rare in that it wasn't until my oncologist, Dr. Chris Taylor, met with a group of other doctors that the primary source of the cancer was determined. The doctors put their heads together in the meeting and figured it out....it was carcinoid cancer and that usually starts in the small intestine. There is no known preventive tests for the small intestine as a colonoscopy only looks at the large intestine and I just had one of those done two years ago. Regardless of the source, the treatment is the same. The goal is to protect and save my liver as it is the most affected by the cancer.
I started self-injections of Octreotide three times daily this Tuesday. Actually John has taken on the nurse role since it's easier for him to reach my upper arms. The Octreotide is used to manage the symptoms of Carcinoid Syndrome, the flushing of my face and neck being the primary sign.
On Wednesday, I had an ultrasound done of my heart. There are a few minor issues with it which will be discussed later after I meet with a cardiologist. Daughter Sharon flew down from her home in Connecticut to accompany John and me as we visited the NC Cancer Hospital in Chapel Hill on Thursday (yesterday). We met with Drs. O'Neal and Kuykendal whose candor and straightforwardness was really appreciated. Up till now, we were pretty frustrated by the confusion of primary source, how bad it was, treatment, success of treatment, etc. Sharon came along with the binder she put together to keep all my cancer stuff in one organized place and took notes. The doctors discussed a procedure called chemoembolization in which they enter the liver through an artery in the leg and inject chemo directly into half of the liver at a time, effectively sealing off the rest of the bloodstream from the chemo drugs. Sharon asked how effective this procedure was. Dr. O'Neal responded that it's very effective in shrinking and controlling the cancer, enabling me to live another another 20 to 30 years. John replied, "I'll take it!" and Sharon said something to the doctor like, "I love you for saying that."
With that encouraging news, we discussed details with Dr. Dixon who will be performing the chemoembolization procedure next Thursday, September 9th in Chapel Hill, which just happens to be the anniversary of my parents' wedding in 1934. Side effects of the procedure are minimal and I should be able to go on our Caribbean cruise in October as planned. I'll have the other side of my liver done in a couple of months and remain on the Octreotide indefinitely.
I plan on updating my blog (or Sharon will do it) as things progress and more information is learned in order to keep friends and family up to date without having to repeat the same story over and over. If you'd like to sign on as a Follower in order to be notified of updates by email, that might be a good idea. Thank you all for your prayers, cards, flowers, gifts and concern. I truly feel loved and want to keep everyone informed. It's just a lot easier for me to communicate to the masses via the internet.
This blog is being started in order to inform interested parties about my newly discovered cancer. I have Gastrointestinal Carcinoid Cancer which has metastasized to my liver.
On August 20th, my doctor told me the biopsy of the lesions on my liver confirmed that I had cancer. Looking back, my symptoms started in November 2008 when I was playing the organ for the eleven o'clock service at Centenary United Methodist Church in New Bern, North Carolina. I felt my face turn red for no apparent reason. This is one of the major symptoms of gastrointestinal carcinoid cancer, called Carcinoid Syndrome. Good sources for more information online are Cancer.org, cancer.gov and carcinoid.org. My other symptoms have been swollen legs and ankles, blisters on my legs, loss of appetite and weight. Each symptom was treated separately by my primary care doctor, the loss of appetite was blamed on the antibiotics I had been taking for MRSA, a type of staph infection I had last fall.
After my daughter Sharon expressed her concern over my weight loss in June, I went back to my doctor and insisted that something was wrong. He ran some blood tests and everything was normal. I went back later, still bothered by my lack of appetite. I had been weighing myself daily, relieved if my weight didn't drop. Hubby John was trying his best to feed me and I tried to eat, but couldn't eat very much at a time. I felt like I had to speak up louder to get my doctor's attention and told him again that something was wrong; I shouldn't be losing weight. He listened better this time and ordered a CT scan done of my lower abdomen which revealed several lesions on my liver. A biopsy done a week later revealed the lesions to be malignant, but a secondary cancer. Primary liver cancer is usually seen in people who have had Hepatitis or alcoholics. The cancer cells indicated that the cancer had metastasized from somewhere else in my body to the liver. But where had it started?
Apparently my cancer is somewhat rare in that it wasn't until my oncologist, Dr. Chris Taylor, met with a group of other doctors that the primary source of the cancer was determined. The doctors put their heads together in the meeting and figured it out....it was carcinoid cancer and that usually starts in the small intestine. There is no known preventive tests for the small intestine as a colonoscopy only looks at the large intestine and I just had one of those done two years ago. Regardless of the source, the treatment is the same. The goal is to protect and save my liver as it is the most affected by the cancer.
I started self-injections of Octreotide three times daily this Tuesday. Actually John has taken on the nurse role since it's easier for him to reach my upper arms. The Octreotide is used to manage the symptoms of Carcinoid Syndrome, the flushing of my face and neck being the primary sign.
On Wednesday, I had an ultrasound done of my heart. There are a few minor issues with it which will be discussed later after I meet with a cardiologist. Daughter Sharon flew down from her home in Connecticut to accompany John and me as we visited the NC Cancer Hospital in Chapel Hill on Thursday (yesterday). We met with Drs. O'Neal and Kuykendal whose candor and straightforwardness was really appreciated. Up till now, we were pretty frustrated by the confusion of primary source, how bad it was, treatment, success of treatment, etc. Sharon came along with the binder she put together to keep all my cancer stuff in one organized place and took notes. The doctors discussed a procedure called chemoembolization in which they enter the liver through an artery in the leg and inject chemo directly into half of the liver at a time, effectively sealing off the rest of the bloodstream from the chemo drugs. Sharon asked how effective this procedure was. Dr. O'Neal responded that it's very effective in shrinking and controlling the cancer, enabling me to live another another 20 to 30 years. John replied, "I'll take it!" and Sharon said something to the doctor like, "I love you for saying that."
With that encouraging news, we discussed details with Dr. Dixon who will be performing the chemoembolization procedure next Thursday, September 9th in Chapel Hill, which just happens to be the anniversary of my parents' wedding in 1934. Side effects of the procedure are minimal and I should be able to go on our Caribbean cruise in October as planned. I'll have the other side of my liver done in a couple of months and remain on the Octreotide indefinitely.
I plan on updating my blog (or Sharon will do it) as things progress and more information is learned in order to keep friends and family up to date without having to repeat the same story over and over. If you'd like to sign on as a Follower in order to be notified of updates by email, that might be a good idea. Thank you all for your prayers, cards, flowers, gifts and concern. I truly feel loved and want to keep everyone informed. It's just a lot easier for me to communicate to the masses via the internet.
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