Homestretch - Second Treatment Out of the Way

From Sharon.

Ruth had the other half of her liver zapped last week at the NC Cancer Center using the same chemoembolization procedure that was so successful on the first half.  Read more about the procedure and what it does on this previous blog.  There were no major problems, but it did take a lot longer for the doctors to stop the bleeding from her hepatic artery and one of the drugs they gave her caused vomiting.  Ruth ended up staying an extra night at the hospital.  John stayed in the hospital room with her both nights. 

Ruth is glad to be back home and resting.  She has some discomfort and major fatigue so please keep this in mind if you call or visit her.  She needs her naps these days.   Ruth's appetite is lacking and she's finding that food she'd normally enjoy doesn't seem that appealing right now.   I expect she'll feel like her normal self within another week or so, especially after her liver shrinks down to its regular size and stops crowding her stomach.  Personally, I just want my mother to weigh more than I do since she's 5'10'' and I'm just 5'4".  Where do we sign up for fat transplants so I can make a donation?

Ruth will probably go back to Chapel Hill in about 6 weeks for another MRI to look at the effectiveness of the chemoembolization.  She'll continue to receive monthly injections of the octreotide drug from her local oncologist for the rest of her life to manage the symptoms of the carcinoid cancer, but if everything goes as planned, the major medical procedures for cancer are behind her now.  We're all looking forward to the next 20 or 30 years with Ruth.  

Ruth with Boom Boom the Maine Coon

It's Working!

From Sharon

Ruth and John returned from a fun, 5-day Caribbean Cruise last week and visited the good doctors at Chapel Hill this week.  Ruth's iron level has been low so she's received one of two iron infusion treatments to bring her iron back up.  She's still receiving monthly injections of Octreotide to help manage her cancer symptoms...a big plus after having to get 3 injections daily.  Thanks partly to the cruise, she's gained about 4 pounds.

In Chapel Hill, she had an MRI done to see if the chemoembolization procedure she had done on the right side of her liver in September had done any good.  She waited around to get the results from the MRI the same day and boy, was it worth it!  The cancer is gone from the treated side of her liver!  Gone!  This is the same liver that was "covered in malignant lesions" when her cancer was originally diagnosed. 

The doctors were very pleased, but seemed to expect such positive results.  Thank goodness for modern medicine and cancer research.  Ruth will be undergoing a second chemoembolization procedure this coming week for the left side of her liver.  Assuming the same wonderful results, her liver should be able to go back to what it does best without a cancer handicap for a long time.  This does not guarantee the cancer won't return as it is originating from the small intestine.  However, the type of cancer in the small intestine is very slow-growing and it doesn't seem to be a major concern at this time.  If it does come back to her liver, the procedure can be repeated.

Ruth feels better prepared for her second procedure and expects to have emotional swings and pain in her side and shoulders for up to two weeks following.  Knowing how well the end justifies the means makes it all worth it though.  Kind of like childbirth. 

Sharon

Hair Today, Gone Tomorrow

From Ruth......

I had a hair appointment Oct 13 to get my hair cut at Milady (place that has been cutting my hair for the past 7 years).  My beautician is Mavis.

Mavis had me come sit in the chair.  She asked me when I last had my hair cut.  I said 4 weeks (looked just now and found it was last cut Aug 5 (6 weeks ago).  She said it has not grown at all.  Unless I wanted it shorter, she could do that.  I let her know it was short enough.  She ran her hand through the top of my hair and announced that I had lost a lot of hair.

My hair needing nothing I made apptmt  for 3 weeks later, but I believe I will have to cancel that.  At least I am not bald........yet.

It's a Beautiful Day in the Neighborhood

From Sharon.

Ruth asked that I update the blog to let everyone know she's doing really well.  Her only complaint is that she isn't able to gain any of her lost weight back.  I'm thinking of trying to liposuction some of my flab and transfer it over to her.  Ah, if only that were possible!  Think of how many cancer patients, Third World countries and runway models we could help with our American fat.  But I digress....

Ruth is back to offering her skills as a substitute organist in New Bern.  She and John attended her 50th college reunion at Wake Forest this past weekend, camping in their new camper instead of hoteling it.  Discovering that their truck strained too much to pull the bigger camper, they have purchased a 6-seater truck with a V-8 engine. 

While they were away in Winston-Salem, some of their neighbors took it upon themselves to give Ruth's yard a makeover.  Ruth loves doing yard work, but has fallen behind lately for obvious reasons.  Rachel, Joe, Ina and Mary Lynn have redefined the word neighbor.  They saw a need and took the initiative as a surprise gift.  Ruth and John came home to a freshly manicured, trimmed and edged lawn.  The plant around the mailbox has been freed from its weed entanglement.  The trash removed, the bushes trimmed, etc.  They even left a beautiful mum for my Mum on the porch.  Major thanks to Rachel, Joe, Ina and Mary Lynn.  Thanks also to Mary Lynn for caring for Boom Boom and Serenity whenever Ruth and John are out of town.  And now that I have this song bouncing around in my head, here are the full lyrics by Mister Fred Rogers:

It's a beautiful day in this neighborhood,
A beautiful day for a neighbor.
Would you be mine?
Could you be mine?...

It's a neighborly day in this beauty wood,
A neighborly day for a beauty.
Would you be mine?
Could you be mine?...

I've always wanted to have a neighbor just like you.
I've always wanted to live in a neighborhood with you.

So, let's make the most of this beautiful day.
Since we're together we might as well say:
Would you be mine?
Could you be mine?
Won't you be my neighbor?
Won't you please,
Won't you please?
Please won't you be my neighbor?

Keep Trying - I'll Just Duck and Run

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

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.

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.