News Notes on Peritoneal/Ovarian Cancer

2009-11-16T17:39:00.000-04:00

New therapy for platinum resistant ovarian cancer increases progression free survival rate by 43%

How much life changes in one year

2009-09-22T19:04:00.002-03:00

It is so hard to believe that just one year ago mom went in to the hospital for what was supposed to be a routine surgery. I talked her to her that morning on my way to work and her way to the hospital. I reminded my boyfriend to say an extra prayer for her that morning. I got to work and taught my students Spanish something. I was trying to be engaging, but kept thinking about mom. After my second block class let out at 11:10, I checked my phone to see if I had messages. I had a text from Katie saying mom was out of surgery. A little while later during my planning block Katie called me right as two of my students came to my room to ask me some questions about a project I had just assigned. She told me the doctors had found cancer. I was sitting in my classroom chair flabbergasted. I felt my face getting hot and I didn't want to flip out in front of my students. Katie told me that dad wanted her to wait until after I left work to tell me so I wouldn't have a tough afternoon, but she knew that I would want to know right then and there. I hung up quickly and just started crying in front of my students. I don't know how I made it through the rest of the day, or the three-hour teacher seminar after school. That day was so gut-wrenching. Every day since then has been gut-wrenching to one degree or another.

Just a few days before mom's Monday operation I was on the phone with her as I was getting ready to go to a friend's wedding. She was trying to sound upbeat and interested about what I was wearing and who would be there etc. But in the middle of talking she burst into tears and said she was just in so much pain. I remember telling her that Monday was just a few days away and wasn't it good that she would be having the operation so her pain would go away. Little did we know that it would only go away after a hellish year of treatments, all to end with her moving on to the next life. I would probably have spit in anyone's face if they'd told me that then.

Life changes so quickly. One second can determine the rest of your life, let alone a day, week, month or year. I am so bitter about cancer and always will be. One thing despite it all that I'm happy about is all the time I got to spend with mom this past year. Thank God for my teaching job and the schedule that allowed me to go to Florida so frequently. We had some bad times and some good times and some fun. We got to talk a lot about what matters most in life.

Don't put off for tomorrow what you can to do today. Tell your family you love them. Call up an old friend. Let go of grudges. Try something you've always want to. Help someone. Smile. Laugh. Live. Because next year you-or they may not be around anymore.

Attention all Floridians!

2009-09-15T13:01:00.001-03:00

Celebrating Martha

She lead an amazing life on earth
and is now tending to new gardens in her heavenly home

Come celebrate her life, her journey, her legacy ...

Saturday, September 19, 2009
10 a.m.

The Pavilion on Lemon Bay across from Englewood Beach
Behind 1855 Gluf. Blvd.

Refreshments and fellowship following
at Martha's favorite local spot:

Gulfview Grill
2095 N. Beach Rd.

Aloha wear encouraged!

Walk to Break the Silence 2009

2009-09-14T17:29:00.004-03:00

Saturday Katie and I went to the National Ovarian Cancer Awareness Month run/walk in South Boston. It was the most beautiful 5K I have ever participated in. There was a wave of turquoise and so many people supporting the cause. Unfortunately the supporters significantly out numbered the survivors. Everyone had a great attitude and it was so awesome to see so many people (I have no idea how many) come together to fight against this nasty disease. The course was all along the waterfront and there was a nice breeze. There was even a Chowda van from Legal Seafoods dishing out chowder to the participants at the end of the event! Jake, Katie's dog huffed it with her and stretched out in the backseat of the car on the way home.

Happy 51st, Mom!

2009-09-04T09:04:00.001-03:00

We know you are celebrating in a much better place! Miss you!

It's hard to believe . . .

2009-08-28T16:04:00.002-03:00

That one year ago, Mom had an appointment with her gynecologist to go over the test results from a transvaginal ultrasound and biopsy. The ultrasound showed some kind of tumor and the pathology came back irregular but non-cancerous. The diagnosis one year ago was a benign fibroid tumor in the uterus.

Here is an excerpt from an email from Mom:

"My body is producing too much estrogen which is making a fibroid tumor (NO CANCER) in my uterus to grow (size of a tangerine) and cause the pain I have been experiencing. Stress related! No surprise. What I wasn't prepared for was the doctors recommendation of a hysterectomy!

Then on Monday I received a call from my gynecologist that my I have an abnormal pap smear result (atypical glandular cells) and that I need to have two biopsies. Uterus and Cervix. In the mean time I have a return check up with my gastro. Dr. and he advises me to go off the aleve/ibuprofen regiment that I was taking to control the pain. Toxic! I felt as though I was 10 months pregnant and I thought I was going to burst."

What's the bottom line?

Even modern medicine isn't fool proof.

Know your body.

Know your symptoms.

Help spread the word.

Group to offer support for women with gynecological cancers | Dothan Eagle

2009-08-26T09:04:00.001-03:00

Group to offer support for women with gynecological cancers | Dothan Eagle

Shared via AddThis

National Ovarian Cancer Awareness Month!

2009-08-23T18:46:00.004-03:00

GO TEAL in September

Wear teal in remembrance of Martha

...On her birthday: Friday Sept 4, 2009

September is National Ovarian Cancer Awareness Month

Know your body. Know the symptoms. Help spread the word.

New therapies for ovarian/peritoneal cancers on the horizon . . .

2009-08-21T11:15:00.002-03:00

From "Mass High Tech Biz News"

Researchers at MIT are manufacturing tiny artificial viruses out of biodegradeable polymers and injecting them into mice with tumors. The goal is to come up with a treatment for late stage ovarian cancer. And it just might work.

“We’re very excited. We can cure mice. We want to treat people but there are a lot of steps until we get there,” said Daniel Anderson, the lead researcher on the project.

The research is part of the growing field of nanotherapy, a research area that has the potential to create an arsenal of new cancer drugs that attack only the sick cells, leaving the healthy cells alone. It’s a revolution that could some day put an end to the 6 to 8 hours-long chemotherapy infusions, the hair loss and the nausea that are routine for many who battle cancer today.
Ovarian cancer is an elusive therapeutic target. Early detection is rare because the symptoms, like fatigue and abdominal pain, are common to many different illnesses. When a patient is diagnosed, the most common course of treatment is surgery to remove the tumor, followed by chemo. But the tumor often comes back.

Anderson’s treatment involves injecting a nanoparticle, made of an artificial virus and therapeutic DNA, directly into the patient’s peritoneal cavity, which houses organs including the liver, spleen and ovaries. Viruses are good at weaseling their way into cells, so they are a good way to deliver DNA or other therapies in a targeted way, directly into certain cells. But the immune system eventually figures out how to battle real viruses, so Anderson makes his from biodegradeable polymers. The nanoparticle delivers a gene that is engineered to kill cancer cells and leave others alone. Anderson said, “The ultimate goal is for the treatment to replace chemotherapy, but in the early stages we will look toward advancing the treatment as part of a combination therapy.”

MIT’s Anderson and his team are looking to partner with another academic institution to do a Phase 1 clinical trial for their ovarian cancer treatment in humans over the next year to two years. His team has also been in contact with potential corporate partners. The team would then file an Investigational New Drug application with the U.S. Food and Drug Administration, which is the first step in a long regulatory process.

Martha's Memorial Services

2009-08-08T18:29:00.004-03:00

Celebration of Life
St Matthews Episcopal Church
Narragansett Avenue
Jamestown Rhode Island

Tuesday, August 11th 2009
2pm

Interment to follow at Cedar Cemetery in Jamestown
Reception at 64 Pemberton Avenue

* * *

Englewood Beach/Gulf View Grill
Englewood Florida
Saturday September 19th 2009
10am

A New Journey Begins

2009-08-08T14:12:00.002-03:00

At 3:27AM Saturday August 8, 2009, angels appeared at Pemberton Avenue in Jamestown and whisked Martha off to tend to the beautiful gardens in Heaven. The current residents there now have more to celebrate as they welcome Martha to grow new roses and plumeria and butterfly bushes. Although those of us left on this planet are faced with the grief and sadness of her moving on, we shall delight in taking care of the flower gardens she has left behind, giving us hands-on experience so that we can assist her when it is our turn to join her once again.

Martha Coburn Clarke Kinnecom
September 4, 1958 - August 8, 2009
Living between the Heavenly sunshine and flowers......

mom is the energizer bunny.

2009-08-07T22:55:00.003-03:00

she has a heart of gold and super strong lungs!

after 3-4 days of constant sleeping under magic-morphine, we sit and wait.

and wait.

and wait.

last night we all camped out in the living room listening to her breathing. it was (this entire experience is) surreal.

today, a flock of birds visited near the window -- a ginormous bluejay, several cardinals, a woodpecker, chickadees, and a beaaaautiful goldfinch. we haven't seen that many birds at one time since we've been in jamestown. so, naturally, we all thought they were coming to take mom!! maybe they were coming to chit chat and prepare her.

the hospice nurse said goodbye to us today because she doesn't think she'll be back tomorrow. pray for mom's safe journey and magnificent welcoming committee, whenever she decides to go.

love,

k & k

2009-08-05T09:23:00.002-03:00

Mom is still resting comfortably here in Jamestown. Here are some photos from last week. Mom, Doug, Kim, Abby and I took a long walk down to the docks on Saturday and ran into a longtime friend of Mom's as well. It was a beautiful day to remember.

Mom with Maura

With Uncle Ricky and Mema

2009-08-04T09:52:00.003-03:00

Last night while Kim and I were asleep upstairs, Mom somehow gathered the strength to climb out of her hospital bed to stand. Her leg muscles didn't support her for very long and she fell for the first time. Dad got her up and moved her over to the pull-out sofa with him. She didn't know where she was going or why she even stood up and just asked, "Are we still alive?"

2009-08-03T13:33:00.002-03:00

Hello all,

The hospice nurse increased the amount of pain medication Mom is taking from ALOT to ALOT MORE. She is also now taking an anti-anxiety pill, and the combination has created a sleepy, dreaming, hallucinating, twitching, and relatively peaceful and painless Mom.

This morning she insisted on brushing her teeth, so Kim and I helped her in the bathroom while she nodded off and on. She has been determined to take care of herself and not "miss anything" for her entire journey with this cancer. Today was the first day she slept downstairs and the first day she didn't take a shower. Mom commented that the house felt like a cookoo farm. We dressed her in a Hawaiian print dress and she is now sleeping on the hospital bed overlooking the birdfeeder.

One of Doug's cousin's shared this passage with me and I'd like to pass it along:

2 Corinthians 4: 14-18
Therefore we do not lose heart, though our outer man is decaying, our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen, for the things which are seen are temporal- but the things which are not seen are eternal.

7/29 Update

2009-07-29T09:38:00.002-03:00

No major changes in the past couple of days ... nothing significantly better or worse but Mom continues to decline. The Hospice nurse who was here Monday ordered some anti-anxiety med. so mom might be able to sleep a little more continually through the night (she wakes up about every hour) and to take the edge off during the day. This morning mom said she only woke up three times last night, slept considerably better and woke up at 7 a.m. instead of the typical 4:30 or 5 a.m.

Yesterday morning she was particularly weak and loopy. She'd fall asleep in the middle of saying something. She doesn't want help getting upstairs (about 15 stairs?) or in the bathroom yet. She's pretty stubborn (I can't blame her) and is desperately trying to hold on to taking care of herself and feeling some sense of normalcy. Yesterday the Hospice social worker came over to talk with Mom and Dad and another Hospice person delivered a hospital bed. Mom wanted the bed next to the windows so she can look out and see the birds/bird feeder and feel the fresh air.

Katie and I went back to Boston for only a couple of hours yesterday to pick up some clothes etc. and stopped by Katie's work so she could sign a leave form.

We had a lovely visit over the weekend with Katie's in-laws Warren and Jean from the Chicago area. They were able to spend some time with the family and also discover where our family is from.

Sunday Nana arrived and is staying in a basement apartment at a friend of the family. Katie and I took her to visit Papa's grave at the Veterans Cemetery yesterday and then to buy a new purse. I am so relieved that she's here.

Over the weekend we also had several special food deliveries from all sorts of friends. Some of Katie's friends from Boston brought several pans of homemade lasagna rolls (the new wave of lasagna!), mac & cheese, cupcakes, salad, loaves of bread, gallons of beverages, and best of all, disposable plates and utensils! Other family friends brought homemade soup and casseroles. Their generosity and thoughtfulness was so great. Funny to think that going to the grocery store and meal planning could ever be challenging... but it is such a relief to open the fridge or freezer and not have to think. (It is sort of full now though.)

This evening mom's uncle Ricky from California arrives and also her college roommate Maura from Maryland. Tomorrow a long-time family friend, Margaret, who lives in California arrives. A week from Friday Randy arrives from N.C., and Uncle David and Aunt Fairlie from Utah. Others are contemplating visits. Lots of people love mom (us too) and being very supportive!

Mom continues to receive cards and flowers which brighten up her days. She really loves getting cards and hearing from people. If anyone wants to send her a note the address here in Jamestown is:

64 Pemberton Ave.
Jamestown, RI 02835

Please pass along the address to anyone else who may want it!

We made it to Beavertail

2009-07-26T10:49:00.003-03:00

7/25/09 We made a short trip to Beavertail to show off this spectacular place to Warren & Jean Young who flew in to visit for the weekend.

July update

2009-07-24T10:40:00.007-03:00

This is the most difficult blog post as of yet. Kim, Mom and I have tried coming up with a variety of ways to declare the unfortunate, the obvious, the inevitable.

Mom's body wants something very different than her mind.

The tumors are relentless and paying no attention to the Doxil chemotherapy that Mom has been getting since June. At this point her entire medical team (both in Venice and in RI) agrees that further treatment would be unsuccessful based on the last CT scan results which showed innumerable lesions on the liver, some in the lower pelvis and larger masses compressing the left ureter, leading to swelling of the kidney.

Mom came up to Rhode Island for a summer visit and it no longer appears as though she'll travel back to Florida.

We have all met with several Hospice workers including a nurse, social worker, chaplain and also the minister from St Matthew's Episcopal Church (where Mom went as a child). Mom & Dad are designing their plot at their final resting place at Cedar Cemetary in Jamestown where they will join many other relatives.

Cancer is taking up a lot of Mom's energy right now, and although she would love to talk and visit with all of her friends and family, it is challenging. If you are too far away to come visit and would like to schedule a phone chat with Mom, please email one of us to set it up.

Mom still looks forward to the mail delivery every day and appreciates each and every note she receives.

Their address here is:

64 Pemberton Avenue Jamestown RI 02835

Thank you all for your continued support through this most difficult and challenging time.

2009-07-21T14:44:00.000-03:00

Update

2009-07-15T17:48:00.003-03:00

This evening, Mom is going to South County Hospital for bloodwork, a CT scan of the abdomen and a Chest X-ray. Next week she finally gets a FULL BODY scan of the bone. As of today, the oncologist increased her pain medication and tomorrow a visiting Hospice nurse is coming to discuss their programs. They will wait for the test results before deciding on continuing Mom's chemo (scheduled for the end of the month).

Doxil #2

2009-07-11T12:29:00.006-03:00

Mom had chemo on Wednesday at South County Hospital in Wakefield, RI. Her nurse Leah is amazing and conducted an extremely thorough interview regarding Mom's ADL's (activities of daily living) and sat down with a Pain Management Specialist to come up with a better plan for Mom. It was SO IMPRESSIVE! Let's hope that the adjustments are productive.

So many friends have stopped by! Here are some photos from the last 7 days.. .enjoy!

Mom and Bobby- still matching hairdo's!
Bobby asked Mom when the last time she had a part was. She responded, "3rd or 4th grade!"

We all got chowdah and clamcakes from Chopmist Charlies and went up to Beavertail!
What a treat.

Mom also had visits from Don & Epsey, Louise & Eddie, Kathy B, cousin Susanne... who took Mom for a ride in her Miata! It has been a full week, and so amazing to see the love and support from all our friends and family. Thank you all so much for continuing to believe in Mom as she fights this battle, running uphill.

02835

2009-07-06T15:27:00.003-03:00

Mom & Dad safely arrived from Florida on Saturday, July 4th! I picked them up in Worcester and we were settled in Jtwn by 5pm. It wasn't long before family and friends came over by the handful to say hi! Over the weekend we spent time with Kelly & Mark, Abby, Julie, Carolyn, Cheri, Monique, Chris, Bobby, and Mary M. It was so wonderful to see everyone!

Mom has an appointment with her new summer oncologist tomorrow and another round of Doxil chemo on Wednesday. Her CA-125 is rising and pain near/on her liver is escalating. Mom also has aches from her neck to her toes. Let's all hope this chemo stops her cells from dividing...PRONTO!

Happy July 1.... photos and observations

2009-07-01T11:49:00.004-03:00

Sunday @ Gulf View Grill
@ Gulf View Grill

Mom got in the pool on Saturday (and then took a nap)

Mom checking out a comfy rocker at Mr. T's on Friday

Mom said this is her best picture since cancer

Family friends came to the hospital Thursday to cheer mom on

Peggy @ Venice Regional getting mom ready for some blood

I really can't emphasize how many curve balls and ups and downs cancer throws. Every day is different, and there are highs and lows throughout every day. The new chemo (Doxil) mom is on now wears her out, but it's very evident that she's not letting it get her down completely. Between the chemo and the regular shot mom's getting, her appetite is completely bizarre, energy level pretty low, and lot of random nausea, but the anti-nausea medicine does help out.

I think if I had to rate my overall observations from diagnosis - now, I would rate the two weeks I was here at Christmas as the lowest point I saw. When I was here in February mom was having a tough time, but seemed to be doing better than she was in December. During my April visit, mom was at her best. I think now she's somewhere in between. When Katie was here a few weeks ago mom was having a heck of a time to say the least and I think she's come a long, long way in just a few weeks. (Plus the blood transfusion on Thursday really helped out a lot.) Mom's spirit is amazing and she's working hard at trying to feel good, staying positive as much as possible and making daily goals (despite taking all her pills, getting her shots, vomiting, and spending a lot of time on the couch).

Some big things mom accomplished: a few walks around the block, getting in the pool once, a short and early trip to the Gulf View Grill (mom and dad's favorite local spot) and a trip to Mr. T's to pick out flowers/plants for the oasis.

Her newest goal is to get on an airplane on Saturday, July 4 to Rhode Island to visit family and friends, and escape the crazy-hot Florida weather that really restricts what she can do. Her next chemo is scheduled for July 8 in Rhode Island.

For now, we all continue with taking everything one day at a time.

Stuff

2009-06-25T09:47:00.003-03:00

We are getting ready this morning to go to Venice Regional Medical Center for most of the day. Mom needs to get a shot and a blood transfusion. Hopefully the transfusion will give her some more energy. Her energy level has been very low for a few days, but she's still been going out into the gardens when she can. (She can't jip the birds and squirrels on birdseed!)

Forever family friends Becky, Phelps and ET will be driving down from the Bradenton area to come hang out at the hospital with us for a while. In the meantime dad will be at the dentist embarking on a two-year process to "fix" some issues in his mouth.

Then... later today Nancy will come over for the dandy shot.

Quick recap of yesterday... Went to doctor's office for blood counts, cleaning of port and chat with Dr. Lifton. Everyone at the office is so pleasant and efficient. No wonder mom and dad feel so pleased and relieved with the care they're getting. I am very satisfied!!

More later.

Adventuring out...

2009-06-22T22:55:00.002-03:00

Today mom and I ventured out to Target and then got take-out at Island Squeeze. Mom hasn't been out a lot lately so it was nice to get out, but a rathering tiring trip. Nancy came by in the late afternoon for the magic shot. Dad continues to work in the garden oasis!

Happy Father's Day...

2009-06-21T12:16:00.002-03:00

Today the big goal is to see if mom feels well enough to make it to Mr. T's to pick out some flowers for dad's "oasis" project. Dad is working on the backyard in phases so mom can help out with new projects as she's feeling up to it. No big plans today other than oasis work and enjoying a nice day at home all together. More later!

Saturday...

2009-06-21T12:09:00.002-03:00

Yesterday mom started out with a morning visit from Nancy and Leah for magic shot (Relistor) administration. Nancy reported that mom is their first patient to have success with the shot. Yay! In a nutshell, all of the pain meds, chemo (combos) cause mom's system to stop functioning correctly, so this shot helps her find some relief. The shot is administered every two days.

In the late afternoon mom and dad enjoyed a visit from out of town family who brought a massive supply of yummy taco soup.

Home for two weeks!!

2009-06-19T18:35:00.003-03:00

The gardens at home are amazing!!

Talking to Katie on the phone while watering the flowers today.

I arrived home on Wednesday evening just in time for a garden tour by dad followed by dinner and a movie. (Premonition with Sandra Bullock.... mom warns not your typical Sandra flick.) Mom was ok more or less, glad to have me home (of course). Yesterday mom had a slow morning, which is pretty typical. After a while we ventured out to the oncologist to pick up a prescription, drop it off at the pharmacy and go to the post office. Mom came along for the ride but wasn't up to going in places. She spent the rest of the day on the couch not feeling too great. Nancy came over around 5 p.m. to give mom the famous "shot." Nancy is very cool and truly demonstrates what real health care is all about; the patient! We had burgers, corn on the cob and tater tots for dinner and watched another movie. (This is basically the night routine)

Today I got up around 8:30 and didn't find mom on the couch. I thought maybe she slept in. Naive me. Mom was already up and about in the gardens in the back yard, fixing the bird feeders that the squirrels persistently terrorize. She had a pretty good morning and went on an errand with dad. In the afternoon she watered flowers and didn't get on the couch until much later in the day! This is a big change from the past few weeks and mom seemed very content with having a seemingly better day.

Tomorrow we are anticipating a short visit from out-of-town family if mom is feeling up to it.

I'll try to write summaries while I'm in town until July 1.

Pics from the week

2009-06-11T11:10:00.009-03:00

Mom w/ Yvette

Dad putting Doug to work

Getting hydration

Watching the squirrels snatch the birdfeed

Gail came over to visit and trimmed the hair around Mom's ears.

Ready to unpack the truck! Dad only found 1 casualty.

With Peggy about to receive Doxil on Wed.

New chemo on Wednesday!

2009-06-09T01:05:00.002-03:00

Since Mom's cells are now platinum-resistant, her MD is starting her on a new chemo regiment called Doxil. The primary indication is for ovarian cancer patients that have been treated with carboplatin and taxol who have become resistant to the cocktail. Her CA-125 indicates that her body isn't reponding to the chemo, so let's pray the Doxil works ....
"THINK SHRINK" according to Nana!!

What is CA 125?

Cancer Antigen 125 (CA-125) is a protein that is found in greater concentration in tumor cells than in other cells of the body. It is present in greater concentration in peritoneal/ovarian cancer cells than in other cells. It is used as a biomarker.

How is CA 125 measured?

CA 125 is usually measured from a blood sample. It can also be measured in fluid from the chest or abdominal cavity.

What is the normal range for CA 125?

In most laboratories, the normal value is less than 35 U /ml.

2009-06-08T23:32:00.003-03:00

Today was a bit like reaching into a Mary Poppins bag or Forrest Gump's box of chocolates. . .

This morning Mom didn't feel so great. She felt 'weird all over' and had some recurrent pain in her lower back region that radiates upwards. On our drive to the Oncology Center, she said to both Doug and I, "Well I think this is as good as it's gonna get today."

When we arrived at the Venice Oncology Center for Mom's purple- power port access, Nurse Nancy was kind enough to also give Mom a shot of Relistor, which reduces constipation caused by narcotics. Oh, and it works within five minutes-- so you better be near a toilet!! We had to be at the hospital for fluids and a CBC so Nurse N. CAME OUT to the parking lot and gave Mom the shot IN the car-- and within seconds Doug sped away. It was quite comical! Mom made it to the bathroom at the hospital within 5 minutes and probably lost another inch or two on her slightly distended abdomen. Of course, the nurses all say that Mom's "distended abdomen" is still way flatter than any of theirs!! (true, true)

We lunched in the hospital while Mom got fluids and gawked at the low prices in the cafeteria. My noodles and veggies were 89 cents and 69 cents, respectively, and Doug's stuff was under $2. Mom had soup & salad, and by the time she had finished, exclaimed that she was feeling much better! :)

Nana came by while I drove Doug to SRQ. I came back to the house to find Mom and Nana watching the birds & squirrels in the backyard gardens competing for birdseed. After the 4th try, Nana's car started and she made her way home. Mom was obviously in pain and discomfort, so I tried massaging her back for a little while and then we switched to a heating pad. While she was trying to get comfortable, I started reading her excerpts from I'd Rather Have Chemo Than Take Out the Garbage, written by a breast and ovarian cancer survivor. After one of her "breakthrough" pain pills kicked in, she felt a bit better.

We had home-made pizza with tomatoes and fresh basil from the garden for dinner... walked halfway around the block, and relaxed with a movie.

Mom and Nancy

Mom getting shot in car

2009-06-07T21:58:00.000-03:00

Goals for the day:
1. Minimize pain
2. Get IV fluids
3. Walk
4. Minimize pain
5. Eat/make sure it comes out the other end
6. Fun-time!*
7. Minimize pain
8. Repeat tomorrow

** Accomplished by playing Scattergories with Nana & watching a flick on our home entertainment center!

6/7

2009-06-07T16:35:00.004-03:00

Dad left this morning for Badin, NC to pack up their remaining possessions and will drive back to Englewood this week in a U-Haul. Doug & I flew down from Boston on Friday and have so far enjoyed the lovely Florida thunderstorms as well as sunshine! We managed to go for a dip in the pool on Saturday after getting home from the hospital. The day started out wondering if Mom had a bowel obstruction and ended by watching a movie together in the living room. The realm of cancer-related "issues" strikes on it's own time, with complete disregard to schedule, and is very disrespectful. After a shot of Relistor, Mom was literally running for the nearest toilet- which she would sit on for the next hour. Luckily, her bowels woke up and a CT scan revealed there was no bowel obstruction... just the ever haunting narcotic-induced sleepy bowel syndrome. We stayed in the hospital with Mom and Dad until Mom's IV fluid drip had completed, and returned home for a late lunch and catching up. Later on, we celebrated Doug's 29th by eating some delicious ice-box cake that Mom had prepared, courtesy of her grandmother's recipe.

where did ya come from, where did ya go?

2009-05-29T22:00:00.003-03:00

no, no cotton eye joe. . .

how did most of you land on this site?

percent search term
32 Martha Kinnecom
30 Help Martha Battle Cancer
15 Kim Kinnecom
3.5 Andy Kinnecom
3.5 blogspot peritoneal cancer
2.3 purple power port
1.2 peritoneal cancer spread
1.2 help martha

so, overall... most people know mom :) but others are finding this blog because of the common interest in finding out more information about peritoneal cancer.

chemo schmemo and other tales of the trade.

2009-05-24T17:04:00.005-03:00

Last week Martha had an adverse reaction to the carboplatin for the first time. She was on the drip for about 5 minutes before becoming "hypersensitive" to the acute toxicity and felt very strange all over her body. They removed the drip and will try again next Wed. with more anti -nausea medication.

The hospital staff has continued to be surprised of Martha's SUPPORT TEAM- they notice a different person with her at most visits!

*sidenote*
Martha goes to the hospital now instead of her Oncology office for insurance reasons. Another post on the ridiculousness of some insurance companies will make its way onto this blog at some point.

Thanks to Nana, Judy D and Martha's godson Christian, & Gail P. for helping out with Martha's frequent trips. (it gives Andy a break!)

She goes in FIVE days a week for either:

- Chemo
- Complete Blood Cell (CBC) Count
- Neupogen: stimulates bone marrow to make more white blood cells
- Doctor's appointment

This doesn't include the weekly trips to the Pharmacy to fill prescriptions. In the last week, Martha and Andy had to go to five different pharmacies to try and fill her painkiller. Nobody had it and nobody will fill it, because now they "have to have it" on hand to fill.

--> insert frustrating face here <--

On a more positive note, Martha has been feeling GREAT lately. They finally figured out a pain med. regiment that WORKS and because of it, she is able to take daily walks around the block (in the morning before the Florida sun gets too hot)! Also, Martha is very pleased that her hair continues to grow back in :)

M's visit from San Francisco

2009-05-24T15:35:00.003-03:00

Mom was SO happy to have *life-long friend* Margaret in town the other weekend -- it was the first time they had seen each other in a number of years. M & M grew up together in Jamestown and saw a lot of each other as Margaret was Jolie's BFF.

So, M. came all the way from San Fran to spend time with Martha and helped out alot, too!

M&M planted some colorful mini-roses under Jolie's magnolia tree/garden and M. also escorted Martha to hospital 3x to give Dad a break. They also took a trip down to Boca Grande, our local "island." Here is a photo on the lanai...

Thank you so much Margaret!!!

Birdwatching and other fun activities . . .

2009-05-22T16:29:00.000-03:00

Becky and Phelps came down from Anna Maria Island when Mema and Poppie were visiting from Little River, SC. Mom was feeling good enough to go out to lunch! They went to the Crow's Nest in Venice, which Mom hasn't been to in "nearly a dozen years," and had a marvelous time.

Mema made some dresses for Mom (above is one of them), selected "breathable" hats suitable for summer and birdwatched in the yard. 2110 West Dolphin is a sanctuary for cardinals, red headed flickers, warblers, purple finches, and butterflies. A bald eagle swooped by several times from the nearby preserve. Other more pesky creatures have been invading the bird feeders. Mom and Dad caught the raccoons destroying a replacement feeder that was supposedly raccoon and squirrel-proof. They continue to be a challenge.

Mom looks forward to another visit from Mema and Poppie the week of May 25th. Mema's mission is to alter the dresses so they fit Mom a little better. :)

Peritoneal Cancer Discussion Board!

2009-05-13T17:55:00.004-03:00

Today on the Primary Peritoneal Cancer Online Group (support group, gripe group, discussion group, info swap group-- etc...) there was a string of emails that MADE MY DAY.

Last night, someone posted an email to the discussion group about their mother's primary peritoneal cancer. Already, SIX people responded with details from their own experience. There are upwards of 30 members in the group (so far!)

When people come together, things happen!!

If by sharing your own story helps another person with their treatment journey, part of the Martha C Kinnecom Peritoneal Cancer Foundations' mission is fulfilled. I am so happy that this forum was established for so many reasons. It gives people an outlet, an outlook and a way to feel connected to others that are dealing with primary peritoneal cancer.

http://groups.google.com/group/primary-peritoneal-cancer?hl=en&pli=1

--katie

mom has hair!

2009-05-12T23:21:00.002-03:00

and another chemo session scheduled tomorrow....
zap! zap! zap!

martha update

2009-05-06T19:36:00.001-03:00

mom has been pain free for over a week now!
round # 2 of chemo today . . .

zap those cells!

mmm... chocolate.

2009-04-28T23:06:00.000-03:00

kim forgot to mention more opportunities to eat massive amounts of beloved chocolate!!!

These are the moments I live for...

2009-04-25T20:14:00.004-03:00

2006. Eating ice cream (what we do best!) while on a horse and carriage ride.
So many more ice cream-eating opportunities ahead.

P.S.

2009-04-23T21:37:00.001-03:00

Rest in Peace, Uncle Fred.

4.23.09

2009-04-23T19:33:00.003-03:00

Martha update:

Martha has been in tremendous pain for the past several months. The pain is localized in her abdomen and wakes her from sleep at night. Even the strong pain medication she has been taking wasn't doing the job. They increased the dosage, increased the frequency, and still it wasn't touching the pain. One month ago, she went to the oncologist to get another CT--and there weren't any changes in the CT since the CT in Jan. So... she was "in partial remission".

Yesterday Martha was in the hospital for a blood transfusions b/c of low RBCs. Last night, they had to call the oncologist because the pain was so bad. Imagine sand paper constantly scraping the inside of your abdomen and add fire, hot sauce, and really pointy nails (think Cruella Deville). They did a repeat CT scan that revealed the little bumps on her peritoneum have reappeared.

So, she'll get chemo every week for the next few weeks. Let's hope the chemo arrests the growth of these cells and gives Martha some peace of mind, body and spirit. Martha is still fighting this cancer with all she's got!!!!

Spring!

2009-04-20T18:39:00.003-03:00

happy easter from englewood!

2009-04-14T10:02:00.001-03:00

drip drip. . .

2009-03-31T10:50:00.003-03:00

There was a blood drive today near work in honor of Kayleigh Rose- a "very happy, very energetic" 5 year old girl. They held the drive at the local nursery school that is close to both Bose and Genzyme. Last year, they raised over 60 pints for Children's Hospital, Boston. My friend Jen from work and I went this morning and all of the chairs were full!

On January 10, 2008, Kayleigh was diagnosed with a very rare form of liver cancer: Stage 3 Hepatoblastoma. On March 15, 2008 she received a liver transplant and has been cancer free for 9 months!

Keep hope alive

2009-03-28T14:01:00.003-03:00

No, Martha's hair has not grown back yet. I posted the picture above (taken in October) as a reminder to Mom that she can and will regain her strength!

You can do it, Mom. We are all rooting for you.

Donate blood, save a life!

2009-03-12T21:36:00.002-03:00

For those of you that don't know, one of Mom's top priorities while Kim and I were growing up was Giving Blood. It wasn't uncommon to see her (try) to donate every 8 weeks. I say "try" because sometimes she was slightly too anemic or wasn't 110 lbs. There are criteria for giving blood, and not everyone fits the bill. But Mom would go as often as they would let her -- to the Blood Mobile, the American Red Cross office in Englewood, or anyplace else that she could donate! I don't remember the exact #, but I know she was in some kind of "Hundred Gallon Club" and even sponsored an event in Badin to support the local American Red Cross and increase awareness about donating blood.

Why?

Mom is type O negative. That means anyone can receive her blood. Only about ~ 7% of people have this blood type! Unfortunately, people that have O neg. blood can only receive O neg. blood. So there aren't that many people that have it, and it's in high demand! For my Mom, it was an easy way to help other people.

Sure, she would never meet them, but she knew that whether it was a patient that needed regular transfusions or a victim from a car accident, her blood would ultimately help save a life.

Now Mom is on the other side-- she is the recipient!! Chemotherapy does a great job of arresting cancer-- but it also stops all other cells from dividing-- including blood cells. When WBC's get too low, you are susceptible to infection, and when RBC's get to low, your organs starve for oxygen. Both of these situations have happened to Martha. Sitting in the "infusion" chair for hours on end made her think about how grateful she is to whoever is out there donating blood.

For everyone out there that still wants to help Martha, she is challenging you to Donate at your local blood drive and help someone like her. While you are at it, spread the word about Primary Peritoneal Cancer (PPC)! Some of her nurses haven't even heard of it. If you do manage to get out there and donate, somehow let Martha know. Leave a comment here, email me, or call her. It will give her all sorts of warm fuzzies :)

Why give blood?

Find a blood drive near you

visit with bobby and uncle fred!

2009-03-06T15:46:00.002-04:00

blood transfusion

2009-03-05T12:48:00.001-04:00

Martha had a blood transfusion yesterday (Wed.) b/c of low counts. Let's pray this makes her feel better!!

--katie

last chemo in this cycle!!!

2009-02-24T17:10:00.006-04:00

I just got back from a quick weekend trip to Englewood and was able to enjoy the Florida sunshine by taking daily walks with Mom around the block! She thought she was going slowly but I was impressed with her pace, given the residual muscle issues in her leg. Mom was cruising along.

We went for chemo #6 on Monday but it was postponed until Friday Feb 27th b/c of Mom's low WBC count. She must have a super-strong immune system, though, b/c she hasn't caught any colds! We went to Rum Bay on Palm Island for a late lunch on Sunday and then watched the Oscars.

-katie

Martha-thon Success!

2009-02-17T19:46:00.003-04:00

Fairlie and David (Andy's oldest brother) who were visiting from Utah also participated in the Martha-thon, along with Liz Neumann Moore, long-time family friend. FUN had by all!

Kim's official time: 2:13:59.
New goal: beat the first!
Donations are still being accepted!

Marathon for Martha

2009-01-13T21:13:00.002-04:00

Another way to help Martha kick cancer's butt!

Sunday, Feb. 15
Sarasota, FL

Kim is running her first ever 1/2 marathon
to help raise some moo-la for
The
MARTHA C. KINNECOM PPC Foundation

Pledge per mile or minute.
13.1 miles
Time goal: To finish alive!
(Event places a four hour limit)

Donations to:
Marathon for Martha
c/o Kim Kinnecom
P.O. Box 1013
Badin, NC 28009

Thanks for your continued support and interest!

Boca Grande day with the girls ... Dec. 29

2009-01-10T22:48:00.008-04:00

Cousins Kelly and Abby and long time family friends Tom and Kathy Bailey came to visit after Christmas for a few days. On Dec. 29 while the guys were out golfing, the girls enjoyed a beautiful day in Boca Grande. Lunch, shopping @ Fresh Produce, frolic on the beach (mom looked on) and ice cream @ Loose Caboose!

another way to help out........

2009-01-10T22:44:00.002-04:00

starting jan. 1 kim is donating $ to the foundation from her handmade jewelry venture "chica rica." check out the site .... www.chicarica.etsy.com

Merry Christmas from Englewood!

2008-12-25T14:19:00.003-04:00

Happy Holidays!

Purple power port

2008-12-09T22:35:00.009-04:00

We had a great 4 days with Mom and Dad in Englewood! On Sunday, we went to the Englewood Fine Arts Festival on Dearborn St. and were treated to a surprising amount of quality art. There was petrified wood furniture, delicate clay orchids, Florida style pottery, music, food and friends!

Later on, we celebrated Nana's birthday at the Gulf View Grill on Englewood Beach. It was Mom's first time out to eat since her birthday on 9/4 when she and Dad were revisiting their honeymoon, the Bethel Inn (Maine). Chris joined us and we had a great time! Our favorite waitress Kathy surprised Nana with a special treat.

Monday was a day away from home at Dr. Lifton's office and Venice Hospital. We left the house at 9:30 and didn't get back until after 7pm. Mom had a checkup with the oncologist in the AM and her port placement all afternoon- her blood counts are up, the lesions on her liver have reduced in size, and no more radiation! Yay! Chemo #3 is tomorrow (Wed), which will be delivered through Mom's new PURPLE POWER PORT. It is a special port for a special lady. Here is Mom after the port placement:

Thank you everyone for your continued support! Mom's highlight is waiting for the mailman every day ;)

Belated Thanksgiving update

2008-12-03T17:52:00.002-04:00

Had a great visit over Thanksgiving. Met Dr. Lifton ... mom is in terrrrriiifffic hands. Delievered the moo-laa for Martha raised at Rock Against Cancer events in Boston and Albemarle, which are sooo greatly appreciated. It's just the tip of the iceberg though! Just one day in the hospital turns out to be insanely expensive. So ... we're still selling bracelets and pins online. You can pick them up in person or we can mail them to you!

Dad is well organized and keeps on top of all the important stuff at home. Mom had a transfusion to help her blood counts etc. and that seemed to work like magic juice. We enjoyed a wonderful Thanksgiving meal with a few family and friends. Dad's vegetable garden is making tremendous progress and we went to a garden center so mom could pick out the flowers she wanted to accent it. Good choices mom! Overall, a good report, and I'm very eager to get back home for a two week visit at Christmas. (Not to mention I'm excited about the FL weather!)

December Martha update!

2008-12-03T13:46:00.003-04:00

Great news!!! Martha is feeling significantly better and just yesterday started using the walker instead of the wheelchair and crutches. Yesterday was her 'best' day in a month or two! She finishes up with radiation this week and goes in for chemo round #3 on Wed 12/10.

CA-125

2008-11-28T11:42:00.000-04:00

Has gone down again!!!

Yippeee!

Chemo is working!!!

2008-11-19T21:21:00.002-04:00

Hi, quick update: Martha's blood level of CA-125 (cancer marker) went way down! 2nd chemo treatment was today.

merch!

2008-11-18T18:26:00.007-04:00

Bracelet

"keep hope alive" (outside)
"believe conquer survive" (inside)

PINS

"rock against cancer"

"bald chicks rule"

get them from katie or kim!
katie.kinnecom@gmail.com
kimberlymartha@hotmail.com

2nd benefit a success!

2008-11-11T22:34:00.004-04:00

Thanks to everyone for coming out to Albemarle's Rock Against Cancer event on Saturday! We raised over $2000 and are still counting...

If you didn't get a chance to buy an awareness bracelet or pin, contact Katie or Kim for more info.

1st cancer benefit a success!

2008-11-10T21:46:00.004-04:00

Thanks to all who came out to support Martha yesterday in Davis Sq!
We raised over $1000!
Special thanks to the Burren for donating the "Back Room"; Mike, Guy, Mike, Jahn, Trav, Rob and Mike for rocking out and playing music for the event.

so the journey continues...

2008-11-07T17:43:00.003-04:00

Thank you all for your continued support!

Update on Martha:

After a week and a half of chemo, her upper body feels much better!

Unfortunately, a lesion in her pelvic region has limited her ability to walk in the past week. Today results came back from a MRI that showed the following: metastatic lesion in an abductor MUSCLE in her upper leg and also BONE. Their oncologist recommended another doctor for them... so Martha & Andy went next door to the radiation oncologist. Martha received radiation today and will have radiation 5 DAYs a week for the next three weeks.

Awareness bracelts

2008-11-05T22:33:00.002-04:00

Keep Hope Alive

Believe Conquer Survive

awareness bracelets

now on sale!

$5 suggested.

2008-11-03T13:31:00.004-04:00

MOVING SALE

to benefit Martha Kinnecom

SATURDAY, NOV. 8

9 A.M. - 4 P.M.

79 WALNUT ST., BADIN, NC

Multi-family moving/yard sale.

All sorts of stuff!

Daewoo Nubira Station Wagon, lawn mowers,

lawn equipment, gas grills, furniture, decor, clothing,

odds & ends and more.....

Boston Rocks Against Cancer too!

2008-11-02T16:13:00.005-04:00

If you live in the Boston area and want to show some support for Martha, come to the
"Davis Square Rocks Against Cancer" Benefit next Sunday, November 9th.
The Burren- Davis Square, Somerville MA
3-6pm
Donations collected at the door
All proceeds to the Martha C. Kinnecom Peritoneal Cancer Foundation

Featuring live entertainment by:
Mike Dublin/Jahn Eichfeld/Mike Stark/Guy Torio
Travis James and the Truth

Make Plans to Attend!

2008-10-27T20:31:00.001-03:00

1st round of chemotherapy

2008-10-27T12:01:00.000-03:00

Will start Wed, Oct 29th. Martha will be receiving treatment for 5 hours. T minus ~ 10 days before she gets a completely new hairdo!

Pray that the chemo wipes out the invading cells!

Introducing the Martha C. Kinnecom Peritoneal Cancer Foundation!

2008-10-24T12:49:00.002-03:00

Andy has been hard at work creating Martha's PPC Foundation non-profit and designing the website. Check it out if you have a chance!

Send out this link... every prayer counts

2008-10-16T21:07:00.011-03:00

The Martha C. Kinnecom Peritoneal Cancer Foundation is asking for your support to help Martha Kinnecom battle cancer!

Martha went into the hospital for a routine surgical procedure in late September, but the doctors discovered cancer instead. She was diagnosed with Stage IV Primary Peritoneal Cancer.

Luckily, Andy is at home taking care of her 24/7. Martha and Andy have discovered their health insurance benefits are limited for her treatment. Andy just created a non-profit organization called the Martha C. Kinnecom Peritoneal Cancer Foundation to raise funds to help cover Martha's cancer treatment costs during this difficult time. Much like the Susan G. Komen for the Cure, monies will also go toward increasing awareness and support for Primary Peritoneal Cancer.

There are many ways to help, and prayer is the #1 way you can help. Let's get a "Prayer Chain" going!

Send this link to people in your address book that will help pray for Martha's recovery.

The #2 way to help is financial. If you are able, you can help the Martha C. Kinnecom Peritoneal Cancer Foundation by buying or selling raffle tickets. Thank you!

The #3 way you can help is through your own creativity. You (or your business) could help Martha by hosting your own fundraiser/benefit!

TOGETHER WE CAN HELP MARTHA BEAT CANCER!!!

Also, feel free to send a card!
Martha Kinnecom
2110 West Dolphin Drive Englewood, FL 34223