My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Monday, September 27, 2010

Leaving again!

I will be leaving again in a few days for a trip to Miami to attend the American Association for Cancer Research's Cancer Disparities Conference. I will attend as part of the Scientist-Survivor Program. I was very grateful for the invitation. I'm sure I will learn a lot.

As I travel more as a cancer advocate, I've taken to extending travels one day for my own site-seeing/discovery purposes. I never traveled in my younger years, so enjoy seeing different parts of the country now. For fun I try to eat the local food wherever I go. In Florida last time, I tried alligator (tastes like chicken but with the texture of shrimp). I tried skate wings in San Diego and LOVED them; skate wings are the "wings" of a creature similar to a mantaray. In Maryland I tried a soft-shelled blue crab (you eat the shell!) and a crab cake sandwich, which they are famous for. I struggled with trying a crab cake sandwich, as a "cake" sandwich kind of sounds like bread on bread? I tried a crab cake in Chicago once, and it was like a muffin with crab meat chunks in it. But, last minute, just an hour before I left Maryland, I tried one. There is no "cake" in Maryland crab cakes, just crab. The crab cake sandwich was the best sandwich I've ever eaten! I also tried shark nuggets in Maryland, kind of like fish with the texture of chicken, just the opposite of alligator. Last year on vacation, my husband and I tried snails...they were great too (they were disguised so they didn't look like snails). Food can be fun!

One thing I've noticed since surviving cancer, I'm less intimidated or afraid of the unknown. I love to fly now (beats road trips like the 1600 mile backpacking trip I recently went on). I used to be afraid to fly...no "fender benders" in the sky. I don't worry about plane crashes anymore. Maybe I finally got it that I can't always be in control?

Kind of interesting, since I travel more, I actually have enough frequent flyer miles for one free flight. I think I will use them for next year's "Heat it to Beat It" in Maryland....and I will for sure have another crab cake sandwich when I'm there! Blue crab was good, but the crab cake sandwiches are better, even better than shark! And I will stay at the same hotel that offers unlimited free milk. I drink several glasses of milk a day and when I travel I go into milk withdrawal. I loved being in a hotel that had unlimited free milk 24/7!

I am so grateful now, as a nine year cancer-free survivor that I don't have the life I had "before cancer", but I can look into the future and make plans again. Not for the distant future, but I can again say the words "next year", which I couldn't for a long time after my diagnosis. My "next year" plans are still tentative, as I no longer assume tomorrow, but I am more comfortable in looking towards the future. I know I am blessed in that sense....for years I only lived my life between 6 month CT scans. I am finally past that now. I don't take tomorrow for granted, but I can now at least contemplate a tomorrow.

Tuesday, September 21, 2010

Heat it to Beat It Update!

I read on the Heat it to Beat It web site that the event was even more successful than first thought! It turned out 500 attended (250 were initially expected), and while the goal was (I thought) to raise $50,000 for research, $90,000 was raised. How great is that!

One of Dr. Sardi's and Heat it to Beat It's goals was to raise awareness for cytoreduction surgery and HIPEC (heated intraperitoneal chemotherapy) as a proven treatment to prolong life and to potentially cure those diagnosed with cancers that have spread into the abdomen from several different primary sources including the appendix, the ovaries, colon, rectum, peritoneum and stomach. For many years, these cancers, once spread into the abdomen, have been considered terminal and untreatable, with IV chemo only used to prolong life for awhile.  When I first became a nurse, before CT, PET and MRI scans, patients had "exploratory laparotomies", abdominal surgeries to look inside their abdomens to find the problem.  When cancer was found, they were closed up, and referred to hospice when they were finally awake.  There was no attempt to treat their disease.  It was terminal.

Dr. Sardi has several long-term survivors of 10 years, 16 years etc. I met a woman on the walk who was diagnosed with advanced primary peritoneal cancer 2 1/2 years ago who is now cancer free and healthy after being treated with cytoreduction surgery and HIPEC. Her sister died of the same cancer just before she was diagnosed; she did not receive these treatments. Most of those with advanced primary peritoneal cancer survive only 3-6 months without treatment.

The sad thing is, I communicate still with many who after diagnosis are told they have no treatment options and only six months to a year to live. My goal is to convince them to self-refer to a HIPEC specialist. I know they love and trust their local doctors, but their local doctors just don't know. Much of the medical community is unaware of this treatment. Some in the medical community are vaguely aware of the procedure, but don't know much about it and think it's experimental. Many insurance companies don't see it as a "standard of care" treatment so refuse to cover it.

We all (myself included) need to be more vocal. If we have the procedure done and are doing well, we need to go back to those in the medical community who told us we were untreatable and show them that thanks to this treatment, we have survived. When we see our GPs or other doctors, we need to tell them about our procedure and survival. We need to spread the word!

My dream is that one day this will be seen as "standard of care" for our cancers. Insurance companies cover treatments that are "standard of care" for an illness. Many other cancers, like breast cancers, have a "standard of care", in a sense a recipe for treatment that is accepted by all in the medical community. If a hospital or doctor was unable to provide the accepted "standard of care" for a breast cancer patient, he or she would be obligated to send the patient to someone who was able to provide the standard of care or be legally liable for denying that care to their patient.

One cool thing, I have a stat counter on my home web site. I can see who has viewed it. I haven't checked in a really long time, but decided to look at it today. Ten medical facilities and several insurance companies viewed my www.appendix-cancer.com website just today, along with several universities. My web site is all about cytoreduction surgery and HIPEC treatments for our cancers. Maybe, just maybe, one health care facility decided to refer a patient to a HIPEC specialist. Maybe, just maybe, one insurer covered the procedure for a patient. I hope so.

But I need to "put my money where my mouth is". A surgical oncologist at large university hospital renowned for cancer treatment told me I was untreatable and terminal 9 years ago. I self-referred to a specialist and am alive 9 years later. I need to talk to him, to tell him that yes; there was treatment for me after all. That no, I didn't die, I lived to raise my kids to adulthood in spite of his predictions. There was something out there for me he didn't know about, and if he has other patients like myself, he needs to refer them to a specialist.

We all need to work towards that goal, for all who will follow us.  We need to create our own grass roots movement, to make it easier for those who will travel our path.

Sunday, September 19, 2010

Heat it to Beat It!



Beginning of the walk

I participated in Heat it to Beat It today, and I thought it was phenomenal!  Initially I was told 250 were expected to participate, then 300....I think over 400 showed up!  For a first time event, I was SO impressed.  They had a DJ, warm up dancing before the walk, lots of refreshments, a beautiful walk along the Inner Harbor and lots offered after (chair massages, acupuncture etc.).  Part of the focus of the walk was to raise awareness for the newer treatments for peritoneal surface malignancies; cancers from multiple sources (appendix, colon, ovarian etc.) that spread into the abdomen that were and are still sometimes considered "terminal" on diagnosis by much of the medical community.  I was one who was  considered terminal on diagnosis by a renowned university hospital in a major city, a hospital known for it's great cancer care...but I am a nine year survivor.  I am a survivor only because I did my research and self-referred to a specialist 750 miles from my home.  Many patients who receive cytoreduction surgery and intraperitoneal chemotherapy survive for many years....but much of the medical community is unfamiliar with this treatment.  Insurance companies unfamiliar with the treatment don't want to cover it.  We need to change that.  I get emotional every time I think that I got to raise my kids to adulthood after initially being told I would abandon them while they were still in grade school.

I loved getting to meet Dr. Sardi.  I truly admire him as he is willing to take on even those of us with massive disease and high grade tumors, the "tough" cases...not everyone, not even all specialists, will.  I am a nurse so also understand that the HIPEC specialists could have much easier lives and make much more money doing other "simpler" surgeries.  The long surgeries (some HIPEC specialist have spent up to 22 hours in surgery for a single case) makes me know they do it for reasons other than the money...there are much easier ways for them to make more money.  They care.  They want to help us.

Here are some pictures from the walk (hope I do this right, I'm not used to adding photos to my posts...bear with me!

Dr. Sardi

A Team


In Memory Of

Dancing "warm up" for the walk
I understand that this is the first of many future "Heat it to Beat It" walks, and in light of my experience here today, I think I may possibly commute to Maryland annually!

Saturday, September 18, 2010

Baltimore!

I am in Baltimore, Maryland right now for tomorrow's "Heat it to Beat It" walk, a walk to raise research funds and to raise awareness for the use of heated intraperitoneal chemotherapy. It is sponsored by Mercy Hospital and many patients and families of Dr. Armando Sardi. I will finally get to meet Dr. Sardi tonight! I hope to meet patients I've communicated with since their diagnosis at the walk also.

I travel more as I've gotten more involved in cancer advocacy and involved a bit in the political arena. In the past couple of years I've been to DC twice, San Diego, and now Maryland. I will be in Miami in about a week for another conference. I usually add a day to the trip to do site-seeing on my own, today was my Baltimore sight-seeing day. My daughter teases me that I christen a new city by getting lost in it, which I usually do (I have a very poor sense of direction). I get lost walking (I do always eventually find my way back after a few miles of walking), but I'm really good at public transportation. I've done the trains and subways in NYC, Chicago, DC and now Maryland with no mistakes so far! I love public transportation in major cities. Baltimore has a great light rail system, and for $3.50, you can get an all day pass to ride the train and buses anywhere. Fun thing is they don't check (unlike Chicago) to see if you purchased a ticket. It's kind of on the honor system, but they do do spot checks for tickets, and if you are found riding without one, you are fined $500. So most seem to buy the tickets for insurance against the fine.  Another great thing here is that my hotel gives free complementary transportation to and from the nearest two train stops, so you can really go anywhere without a car.

Sculpture over the
Harbor

The Science Museum
I spent most of the day in the Inner Harbor. I'll insert come pictures I took here! The center of Baltimore is a large harbor with access to the Atlantic Ocean.   The area has museums (see right), lots of restaurants and shops, also boat tours of the harbor.  I took one of the boat tours, which was pretty inexpensive and nice.  Above is a picture of a sculpture over the harbor.  
Ritz Carlton Condos on the Harbor

Will be back hopefully tomorrow with pictures from the walk!

Monday, September 13, 2010

Something great!

I recieved an email today from Stanford University's Patient Education Research Center. They are conducting an on-line workshop.

The writer told me:

"Our organization is currently running an online workshop for people who have survived cancer multiple times, with the goal of providing support to cancer survivors and helping them get back into living again. This study was run before for one-time cancer survivors with great success, which is why we're running the same study for people who have survived cancer two or more times."

Sounds great to me! We all need help to "get back to living again". If you are dealing with a recurrence of your cancer, or if you have previously had another primary cancer (I know a few appendiceal cancer patients who have had prior cancers, breast etc.), are over the age of 19 and are not actively receiving surgery, chemo or radiation, you are a candidate for the program.

You can find out more about this program and how to apply to participate at this web site: What is the Cancer: Thriving and Surviving Workshop and Study?

I've pasted some information from their website below, but go to the site to see the rest!:

What is the Cancer: Thriving and Surviving Workshop and Study?

•An online workshop and study designed for cancer survivors and led by cancer survivors.
•A community to share your problems, hopes, fears and inspirations with other like minded people
•Easy to follow, interactive online sessions are posted each week for six weeks. You can log on any time that works for you and it only takes about 2-3 hours each week.

Benefits of joining

•Learn to manage your fears and stress
•Learn ways to manage fatigue, pain, and the effects of treatment
•Set goals and work toward them
•Find better ways to talk to your friends and family about your health
•Get support and share your experiences with others who have survived cancer
•Sign up today, and discover, simple, practical steps you can take to get the most out of life.

Who may participate?

•Adults (19 and over) who have been diagnosed with a second or reoccurring cancer within the last 5 years
•Are not currently receiving intensive cancer treatment (surgery, radiation and/or chemotherapy)
•People on hormonal therapy or long-term maintenance medication can participate
•Have access to the internet (high-speed recommended) and an email account
•Living in the United States

What alumni are saying

•"Feedback, support and advice from someone in the same boat was encouraging. The group was uplifting and inspirational"
•"Knowing I am not alone with my fears and problems "
•"A good reminder of things to do, a guide on how to do things if needed (exercise, goals, etc.)"

Thursday, September 9, 2010

Don't forget, and for Facebook users, hit "Like"!

Don't forget to watch Stand Up To Cancer tomorrow, it's on all of the network channels and several cable channels at 8PM (7PM Central time).

Also, I received this email today, and you can get $1 donated to Stand Up To Cancer by hitting a "Like" button on this facebook page; these are the details I was sent today:

I’m Rachel from Gilt Groupe Home and Children. Gilt Groupe is known for offering designer products at reasonable prices, making a name for ourselves by making you look your best for less. But now, we also want to make you feel good: we're donating $1.00 to Stand Up To Cancer (http://SU2C.org/) for each new "like" on the Gilt Home Facebook page.

Our donation goal is $25,000 and we hope to reach it by Monday at 11:59 pm. EST. There are a couple ways you can help Gilt Groupe reach our donation goal:

“Like” the Gilt Home Facebook page and in return we’ll donate $1.00 to Stand Up To Cancer - Encourage your friends to “like” Gilt Home by clicking the “Suggest to Friends” link under the Gilt Home picture

Monday, September 6, 2010

What questions to ask when you are newly diagnosed?

I am writing this in response to a comment to my last post. I think all of us new to a cancer diagnosis struggle with what questions we need to ask the physicians we see. I did a lot of research prior to my first appointment with a specialist as I wanted to be able to ask intelligent questions.

I have some questions to ask listed on my FAQ page, they are as follows:

How many cases of appendix cancer (or peritoneal cancer) have you treated? (I personally wanted a specialist who had treated at least 50-100 cases of my rare cancer)

What treatments do you use?

What are your survival rates?

What are your complications rates?

How aggressive is my particular tumor?

What treatments do you think I will need?

How long do you expect my recovery from treatment to take?

What is the recurrence rate after treatment?

Another good list of questions is posted on this Making Sure Your Surgery is Safe site, published by the US Department of Health and Human Services.

My local very good surgeon, on discovering my cancer, also said that I needed a hemicolectomy ASAP. I personally chose not to have any further surgical procedures done at the time (my appendix had been removed laparoscopically), as I had thought I might need more than just a hemicolectomy, and wanted to have any surgery I needed done all at once. Because my appendix had ruptured, I knew I had seeded my abdomen with cancer cells, and based on my research, I felt I also needed peritoneal chemotherapy. Peritoneal chemotherapy is less effective when you have had previous abdominal surgeries (due to scar tissue and adhesions that form preventing distribution of the peritoneal chemotherapy...scar tissue and adhesions develop in about 5 days after major abdominal surgery).

In the end, I waited 6 weeks to have surgery done by a specialist who had treated many cases of appendix cancer (my surgery was more involved than just a hemicolectomy, I had the hemicolectomy done as part of my cytoreduction surgery). I had peritoneal chemotherapy initiated almost immediately after surgery (before scar tissue and adhesions had formed), and had not other abdominal surgeries aside from the laparoscopic appendectomy prior to my cytoreduction surgery. All of those things I think went in my favor, I have been cancer-free for 9 years.

While we all want the cancer removed from us as soon as we are diagnosed, sometimes it is worth the wait to seek out the correct treatment, to see a specialist. I have many of the specialists listed on my "Physicians and Facilities" page.

Hope that helps!

Thursday, September 2, 2010

Cancer Genomics

I am back in school! I am working on a graduate Oncology Certificate through Loyola University in Chicago. I love going to school, and I love learning, so I'm excited!

I am only taking one class right now, Cancer Genomics. Not many oncology certificate programs offer classes in cancer genomics, it's one of the reasons I decided to pursue the program at Loyola. I've been exposed to much research in cancer genomics attending AACR research conferences, so have a little bit of knowledge. I know cancer genomics will change the future of cancer care.

Cancer genomics is about the genetics of cancer. Cancer is a genetic disease; it is caused by altered genes. Genes that normally control and limit the growth of cells goes awry. Only a small percentage of cancers are caused by genes inherited from our parents, only 5-10% of cancers are inherited. Most cancers are caused by genetic defects/changes that occur over our lifetimes. Recent studies have found that cancers do not arise from a single defective gene, but from a group, or series of genetic defects.

It was also discovered that even in people with the same cancer, say colon or ovarian cancer, the genetic defects in the tumors from two patients with the same cancer can be very different. So even two of us with signet ring appendix cancer may have very different tumors that respond differently to treatment. This may explain why chemotherapy for one patient’s colon cancer is not effective on another patient's colon cancer (or appendix or ovarian cancer).

That may sound like bad news, but it may in fact be good news. A new field is rising from cancer genomics, pharmacogenetics. It is possible that all of our individual tumors will be genetically analyzed in the future. It's possible that based on the genetic findings of our tumors, they will be able to determine which chemotherapy will be most effective for a particular patient's cancer. That means no one would have to suffer the side effects and expense of going through a chemotherapy regime that would not benefit them.

At the presentation, they said it will one day also be possible based on a patient's genetics to determine who will have severe reactions and side effects to a particular chemo, so that they can avoid using the particular chemotherapy for that patient.

It was interesting; one of the presentations I attended spoke of a particular chemotherapy in a clinical trial. The chemotherapy only helped 10% of the patients in the trial, so the drug was not approved by the FDA. The interesting thing was that the 10% who did respond had an overwhelmingly positive response, many went into remission. It could be that particular 10% had common genetic defects, and that the particular chemo was effective for that group. It could be in the future that treatments are tailor made for the genetics of our particular tumor.

Will let you know more when I know more...but it's a brave new world in cancer care!

Wednesday, September 1, 2010

Thinking.....

I've been working a lot of hours at my new job...it's been interesting. For me it is an entirely new nursing venue, nothing like what I've ever done before. My best friend wanted me to try it. I'm working at an in-patient locked psychiatric unit for kids ages 5-17. I've never done psychiatric OR pediatric nursing. This job will let me choose my hours, as I will hopefully be in two graduate programs simultaneously and often attend various conferences. I need the flexibility. They've told me they like and appreciate me there, but realize they are just a "pit stop" in my career, as they know my career goal is to work in oncology.

What intrigued me to work in psychiatric nursing was how much I know of how a cancer diagnosis disrupts our mind, our thinking, and our emotions. For me recovering from the extensive surgery (MOAS, Mother Of All Surgeries) and chemo was a breeze compared to living with the fear of recurrence, the sense of uncertainty, the anxiety, the depression sometimes.

Most of the kids I now take care of have had horrible lives. They grew up in homes where there was alcohol and drug abuse, very many have been sexually abused; they have been traumatized from a very young age. Most have also been physically and emotionally abused. Many suffer from PTSD (post-traumatic stress disorder) related to incidences in their lives. One teen I take care of was sold to child molesters at a young age for drug money for her parents. One lived with her grandmother because she had been removed from the home of her drug abusing mother, but was allowed to visit her mother. One of her mother’s friends raped her at age 7 when she was visiting.

All of the stories are sad. Many of the kids will never recover...if they make progress at our facility many will be discharged back to the dysfunctional homes they came from. Some go on to live their remaining lives in state psychiatric hospitals. They have been forever changed. It's heartbreaking.

But it makes me think of how traumatic events in our lives forever changes how we think, how we feel, how we live and process information, even as adults. Many of my kids mistrust the future, as do we after a cancer diagnosis. Many kids suffer PTSD as a result of trauma in their lives...it is now being recognized that cancer patients do as well. Many have had their lives threatened, we have too. At least we have the benefit of having grown up in a hopefully healthy environment before diagnosis, so we have some resources we've developed over our lives to help us come to workable solutions. We are also for the most part adults and independent so can pursue resources to help ourselves, like counseling and antidepressants if we feel we need to.

But in the end, it's made me so aware of how negative experiences affect us all in so many ways. We can still pull some positive things out of our cancer experience (though I continue to feel cancer is not a "gift"). My hope is that some of these kids can recover and make positive use out of their experiences...maybe one day help other abused kids as they will understand. Just like those of us who have been through the cancer experience support and understand each other. We need someone else who's "been there and done that".