Its not a tumor....

So life in cancerland is basically summed up by the one thought: "will it come back?"

As this child helpfully tells us in Kindergarten Cop, that is the one thing we can't get out of our heads.

Every ache and pain could be a something, meaning a bad something. We have to learn is how to balance that thought. Sometimes helpful people say wonderful, well meaning things like this to us which help raise our cancer-cootie-concern-level. Or sometimes a peak inside our insides in an MRI, PET or CT scan gives us bad news. At which point the cancerland roller coaster starts going up the really steep hill and becomes a whirling twisting ride until we hopefully can get back to the smaller hills.

No I am fine but this video popped up on my radar the other day and it makes a valid point.

Be Bold, Be Bald Day

October 17th is national be bold, be bald day (www.beboldbebald.org). I had never heard of it before this morning but its the 6th annual. I am not so sure how I feel about this.

If you are a supporter, you get to wear a lovely bald cap (which looks nothing like a bald head) to show your support of people who have lost their hair as a result of cancer treatment. Once you sign up you can order your kit of a bald cap and sign up sheets or you can order bulk quantities of bald caps for your team.

You can sign up your organization to be a beneficiary of the BBBB effort. Then you will receive about 75% of what was raised by your supporters.

I have decided I have two problems with this effort:

1. All the smiling people wearing ugly bald caps over long hair do not make me think of cancer patients. 
2. 25% of the amounts raised don't make it to you.

I have a friend of mine who shaved his head to show support for someone with cancer. That is what I call bald. But it still doesn't have that chemo pallor we all know and love. And its not worth 25% of your money to wear an ugly bald cap.

How ugly are these bald caps? this is a picture of actress Kathy Bates wearing one of these.


Now that I have written all this I guess I have decided I don't really like this much at all. I like the solidarity but that's about it.

An Amazing Video

The purpose of this video is Hannah wants to explain what its like to have cancer to her friends. She has been very brave and will make you cry.




She also wants to be famous so help share her story.

And she has a really cute outfit.

I'm reading

Earlier this year the movie, "The Fault In Our Stars" came out. Everyone raved about it. I wasn't sure. I never saw it. But I did sign up in the library to read it. I was something like 453'rd in line to read one of 20 copies.... I figured it would take a very long time.

And Tuesday I got the magic email that finally there was a copy available for me. Tuesday night I downloaded it and started reading. And reading. And reading. I read some more yesterday. And even more last night. Its only 200 pages but I have been busy so I haven't been able to sit down and read for a few hours.

I am most of the way through it at this point. I know what happens at the end essentially so you can't really spoil it for me but I do want to read the rest.

What do I like about it so much? Well the insights into life with cancer. I can relate to lots of them. You know all that stuff that gets donated to cancer patients? They call them Cancer Perks. You know everything from the free hats for bald patients to the autographed sports stuff from athletes.

I love the vocabulary introduced throughout it. Its kind of teenageresque but I can relate. The protagonist (fancy word this early in the day) had thyroid cancer which has made a nice colony in her lungs. If you haven't walked the walk, you may not get it.

But I digress. I plan on finishing it. I may reread it (I have two weeks and I think there are now less than 200 people on the waiting list for one of the 20 copies). And I want to do a little more research. I think the story is somewhat based on a real teenage girl and I want to find out more about the author to see how they managed to write with such insights into cancer land. I might even watch the movie sometime soon.

But in the meantime, I will keep reading and I recommend it for anyone in cancerland.

Raising cancer awareness

One rap video at a time....





He's 19 and should be a UCLA freshman instead of sitting in a hospital room with a chemo pole. Between treatments he created a rap song to show the every day life of a cancer patient which he hopes JayZ will hear and help him raise awareness about cancer.

I can verify it sucks to be 19 and diagnosed with cancer. Go for it Thomas.

'Chasing Life' or Coping with a Cancer Diagnosis

I have been watching a new show on ABC Family called 'Chasing Life'. I was drawn to it for two reasons - its based in Boston and its about someone with cancer. I always like to check out the shows based locally - to see how good or bad a job they do. This one doesn't even attempt Boston accents which is good (because they never get them right) and is entire unrealistic in that a three generation family lives in a townhouse on Beacon Hill, which probably lists for a few million.

Here is the 'official' show description:

"Chasing Life follows twenty-something April (Italia Ricci), a smart and quick-witted aspiring journalist, who is trying to work her way up the ladder at a Boston newspaper by trying to impress her hard-nosed editor. When not pursuing the latest scoop, April tries to balance her ambitious career with her family – her widowed mom Sara, rebellious little sister Brenna and her grandmother. Just as things start to look up at work, home and on the romance front with co-worker Dominic, April gets the devastating news from an estranged uncle that she has cancer."

But I digress. What I do like about it is that the star, April, is coping with a diagnosis of leukemia. While yes there is the drama of a boyfriend, a BFF who is a drama queen, a bunch of family crap which can be entertaining, the issue of coping with a cancer diagnosis resounds with me.

I have watched the first two episodes and she has only told her BFF about her diagnosis and can't seem to find the right time to tell anyone else. She can't find the words, she can't find the time, she doesn't  know what to say. Her mother, sister, grandmother, co-workers, and boyfriend do not know.


While I fear the show is playing off what I feel is the latest trend that it is 'hip' to have cancer coming out of Hollywood - there seem to be more and more movies and shows about this - I can relate to this one. I dreamed about how she is dealing vs how I dealt with sharing my cancer news. As someone who went through the issues she is facing, I feel the show is realistic in its depiction of the issues. Usually if someone hasn't walked the walk with coping with cancer, they cannot talk the talk.

I plan to continue watching the show and am optimistic it will not deteriorate into fluff or stupidity. I am a few episodes behind which are safely stored on the Tivo until I get to them.

Age makes a huge difference

At both my cancer diagnosis, I was told 'you are definitely too young to have this type of cancer'. Gee thanks. Was that supposed to make me feel better? Because it didn't.

At my second diagnosis, I joined a support group for newly diagnosed patients which included a 28 year old. Then there was me and then everyone else was a decade or two older. I could relate to the 28 year old's concerns more than some of the older women. We still remain tight as a group but the youngest of us, now nearly 35, is thinking about starting a family, if at all still possible. She has a completely different goal than the rest of us.

I know a 22 year old going through treatment for liver cancer and she had surgical drains that were big and nasty for weeks and couldn't wear the fun clothes she wanted. She wants to have fun with her friends and stop going to the hospital. I can sympathize. Its summer and time to have fun, not wear baggy clothes to hide drains.

When I was 19 and dealing with thyroid cancer, I didn't want to stay home as my friends went out. I also didn't want to have to explain the scar across my neck to everyone - the scar that hadn't been there at the end of my freshman year but was newly done and bright red across my neck. Turtle necks in the summer time were not and never will be a fashion statement.

Don't call young people with cancer superficial if we thought of fashion first and then going out with our friends. We were just trying to be ourselves and deal with what is important in our lives. Dating is way more important to a 20 year old than it is to most 50 year olds. Scars and drains put a damper on going to the beach and baring almost all. The idea of getting naked with someone which showing all your surgical scars can make you think twice or three times.. That can put another damper on your dating life.

I have always been a fan of Stupidcancer.org (and wish it had been around decades before). I read this article yesterday about how it got started and the support groups for young adults which have been meeting in CT for the past six years. It illustrates the different needs between young and older adults with cancer. If you are under 40 and dealing with cancer, get to one of Stupid Cancer's events and meet people who can relate.

In need of a few profound words

Last weekend, we participated in the New England Coalition for Cancer Survivorship's annual Take the Lake event. It is a family friendly fundraiser - 25 mile bike ride or 3 mile run/walk around a local lake. In my normal healthy manner, I convinced my husband to walk around the lake for the exercise while I took care of fundraising and selling raffle tickets at the event.

As an incentive to all the fundraisers, anyone raising more than $500 got a commemorative brick in Boston's Garden of Hope in conjunction with the Conquer Cancer Coalition. That seemed a little far off for me but we actually did raise an ample amount to get a brick. Now the question:

WHAT THE HELL DO WE WRITE ON THE DAMN BRICK?

It will leave a eternal lasting impression in Boston's City Hall Plaza and will be seen by many people over the ensuing centuries. Or maybe I am too optimistic and I should say decades. But still it will be brick and be here for a really long time.

We have 12 days to figure this out. I need inspiration. Four lines, 21 characters (including spaces) each.

All I have come up with so far is:

Remembering Those
Who Went Before Us

And then our names (which do not fit on one line)

What would you write? Its not about us. I know too many people who have died of cancer to list them all and to list only one or two would be skewed.

The truth is not inthe number of years for cancer patients

Last week a friend  announced rather publicly on Facebook that she was celebrating 34 years since her cancer diagnosis. I think I have mentioned her in posts previously. My first cancer's diagnosis is 33 years in August. The difference is she was stage IV ovarian cancer in 1980. I was stage I thyroid cancer in 1981. But am only at 7 years out from my more troublesome stage II breast cancer.

At first glance those number seem good. I mean we are still here. But they don't talk about the stress and the emotions behind it. We now have had years to learn to deal with it. By now being more open about celebrating, it is clear we are both doing that.

She has clearly defied the odds. But the numbers do not tell the tale of the life behind it.So we are still here but the truth is not in the numbers.

Go be inspired

Stephen Sutton died yesterday morning in his sleep at the age of 19 in the UK after being diagnosed with bowel cancer in September 2010. He had a Facebook page and a website with a blog and a bucket list (mostly completed) and you can follow his timeline to learn what he did.

He accomplished a lot in his short life including raise over 500,000 pounds for charity. He should be remembered as someone who did some pretty amazing things. Go read about him and be inspired to get moving in your life.

National Coalition for Cancer Survivorship

There is a national group - National Coalition for Cancer Survivorship (NCCS) - which focuses on advocacy for people living with cancer. I detest the word survivor but I'm okay with it here. Their website url tells it all - www.canceradvocacy.org. They advocate on cancer issues.

Are you familiar with the oral parity issue? That's the one where cancer treatment given as an infusion is paid for by your health insurance which covers most of it. But if the patient is switched to a pill form of treatment, it is covered as part of the pharmacy benefit - usually as a branded premium medication which is covered by a huge copay. The oral parity bill is hoping to change this so that the coverage is the same.

They had a a recent event called "Putting the Patient First" which focused on more issues of payment reform. They also have all sorts of resources on their website and they talk about a lot of other legislative changes in progress. And they have local chapters.

I am a volunteer with the New England Coalition for Cancer Survivorship - or NECCS. Today is their annual luncheon where I helped get together the vendors for a small craft fair. I will bring my checkbook...

As part of the luncheon they award some people who have gone above and beyond. I nominated my oncologist for her cookbook for cancer patients so I am also introducing her.

If you are someone living with cancer and are looking to help in some way, the NCCS is a great way to help. I do not do as much on the advocacy side myself but am happy to help with their events and in other ways locally. Every little bit helps.

We can learn from the children

I found this article written by an adult with a pediatric cancer so she was in the pediatric cancer ward with all the kids with cancer. It was an educational experience for her with her cancer avengers and the article is a learning experience for the reader.

The author, Ann Graham, moved into the pediatric ward for a year of treatment:

"Then I became one of them: No hair. Giant, treacherous scar. Wheelchair. Ever-present IV pole, and dusty-rose colored kidney-shaped bowl to throw up in. These were all outward signs of a fraternity of warriors that no one wants to belong to. They all were enduring the same grueling treatment I was -- only they were, on average, 10 years old.

This fraternity of Cancer Avengers was wise in ways beyond their years. When faced with the courage and bravery of these little superheroes, I had to give myself the "Put your big girl pants on" speech more than once.

On my first day of treatment, while I was scrolling through my Facebook feed by the fish tank, two boys next to me started discussing their Make-A-Wish requests. Adam, about 12 years old, had just returned from a rainforest trip and asked what Sam's wish was going to be. Sam said they couldn't give him what he wished for. Adam disagreed, enthusiastically conveying that any wish could be granted. Sam stood firm: It was not possible.

Well, what is it that you want anyway? Adam wanted to know. By now, I also wanted to know.

"I want normal," was Sam's answer. "I want to go to school and basketball practice, complain about my parents and homework and turn 12.""

What do adults talk about whenthey ahve cancer? They talk about cancer and obsess about it. Children are different:

"I never got depressed with the Cancer Avengers. They never talked about cancer. They talked about friends, music, sports and Spiderman. Hope prevailed in Pediatric Day Hospital."

They have hope. They are wise beyond their years.

What was I thinking?

In 2008, I participated in a weekend long retreat run by Casting For Recovery on Cape Cod where we learned fly fishing. It was a retreat for women with breast cancer and had such an impact on me, I went back and volunteered in 2009, 2011, and 2012 (no retreat in 2010, 2013, and 2014). The woman who lead the retreat for 15 years resigned in 2012 and the group sort of fell apart as others also resigned because they had been volunteering as long and it was time to move on.

Now, me, yes, me with all my health ailments has volunteered to be the new retreat coordinator for Massachusetts and Rhode Island and get the retreat going again in 2015. I do not have much to do, I am sure it will be easy with all my excess energy. I need to come up with a team of volunteers, run 3 fund raising events each year, and get it all organized.

This is what I have so far for a team: me with a few others who have promised to help once we get moving.

This is what I have far for fundraising events: I think we will have a reunion luncheon in the fall.

Otherwise, we do not have anyone, nor a location, nor a budget (I need to write that one out), nor much financing. I have a bit of work to do.

But I want to do it. The weekend I participated in the retreat I remember driving there thinking 'what the hell am I doing going away for a weekend to learn about fishing - and I'm not touching a single slimy fish - with a bunch of people I don't know - I really am crazy - I must have lost all brain cells during chemo. But wait, I have gall stones and can always claim a gall bladder attack and leave if it is really that bad.'

It really was a turning point in my coping with breast cancer. I left inspired and energized. I even got a fishing rod (not that I ever go fishing). I wanted to help other women have the same experience that I did. The three years I volunteered were all the more beneficial after seeing the participants grow and cope with their breast cancer diagnosis and treatment were even more rewarding.

So now, I am determined to get this program back on the road again. I am mailing out a letter to all previous participants in MA and RI and getting the ball rolling. Another former participant is printing the letters. I will stuff the envelopes next weekend and send them on their way.

If you want to help me in my moderately insane decision to do this, please let me know. You can volunteer (contact me) or donate (see their website for details and mark your donation for MA/RI retreat). Sometimes I may be really crazy but I think this is something I really want to do. Its all about the benefit for the women who are coping with breast cancer and the benefit it gives to them.

I'm reading

Earlier this year the movie, "The Fault In Our Stars" came out. Everyone raved about it. I wasn't sure. I never saw it. But I did sign up in the library to read it. I was something like 453'rd in line to read one of 20 copies.... I figured it would take a very long time.

And Tuesday I got the magic email that finally there was a copy available for me. Tuesday night I downloaded it and started reading. And reading. And reading. I read some more yesterday. And even more last night. Its only 200 pages but I have been busy so I haven't been able to sit down and read for a few hours.

I am most of the way through it at this point. I know what happens at the end essentially so you can't really spoil it for me but I do want to read the rest.

What do I like about it so much? Well the insights into life with cancer. I can relate to lots of them. You know all that stuff that gets donated to cancer patients? They call them Cancer Perks. You know everything from the free hats for bald patients to the autographed sports stuff from athletes.

I love the vocabulary introduced throughout it. Its kind of teenageresque but I can relate. The protagonist (fancy word this early in the day) had thyroid cancer which has made a nice colony in her lungs. If you haven't walked the walk, you may not get it.

But I digress. I plan on finishing it. I may reread it (I have two weeks and I think there are now less than 200 people on the waiting list for one of the 20 copies). And I want to do a little more research. I think the story is somewhat based on a real teenage girl and I want to find out more about the author to see how they managed to write with such insights into cancer land. I might even watch the movie sometime soon.

But in the meantime, I will keep reading and I recommend it for anyone in cancerland.

They want all the ribbons too!

Or another appalling example of Komen's good' will. I am not into Komen bashing as a rule but sometimes they just set themselves up for it.

This time in Okeechobee County, Florida, there is a woman coping with breast cancer. The local Komen affiliate in Florida does not provide financial support to women in Okeechobee county. They recognize there are underserved areas and that they can't help everyone. I can understand this. They are part of a safety net and just can't get to every woman. This isn't my problem.

Here's the problem. While she was in surgery,  her husband doodled up a little ribbon logo for her.

Now they are getting a nasty letter from Komen saying it infringes on their pink running ribbon. Seriously? Don't rub salt into the wound here.

Komen is becoming lawsuit happy. You can't have anything 'for the cure' because they 'own' the damn phrase. Now they want all the ribbons? What a bunch of idiots!

What cancer is and isn't

I see lots of different takes on what cancer is and is not. Here is my take:

Cancer is:

• a disease that can kill you.
• a diagnosis with a unimaginable impact. It impact has been compared to PTSD. If you haven't walked the walk, don't even try.
• a life long ailment. Just because you are done treatment, doesn't mean you are home free.
• a gift. I have been known to cynically call it a 'gift that keeps on giving' because the cancer roller coaster really sucks. You never know when it will cause another problem or recurrence.

Cancer is not:

• a color. As soon as pinkification begins, its like putting lipstick on a pig. Other colors included. Don't try to 'paint' cancer.
• a political position. Some politicians have been known to make it their platform.
• a spiritual condition, Some people get more religious which is fine. But some people after diagnosis, make it their calling.
• your life.

National Coalition for Cancer Survivorship

There is a national group - National Coalition for Cancer Survivorship (NCCS) - which focuses on advocacy for people living with cancer. I detest the word survivor but I'm okay with it here. Their website url tells it all - www.canceradvocacy.org. They advocate on cancer issues.

Are you familiar with the oral parity issue? That's the one where cancer treatment given as an infusion is paid for by your health insurance which covers most of it. But if the patient is switched to a pill form of treatment, it is covered as part of the pharmacy benefit - usually as a branded premium medication which is covered by a huge copay. The oral parity bill is hoping to change this so that the coverage is the same.

They had a a recent event called "Putting the Patient First" which focused on more issues of payment reform. They also have all sorts of resources on their website and they talk about a lot of other legislative changes in progress. And they have local chapters.

I am a volunteer with the New England Coalition for Cancer Survivorship - or NECCS. Today is their annual luncheon where I helped get together the vendors for a small craft fair. I will bring my checkbook...

As part of the luncheon they award some people who have gone above and beyond. I nominated my oncologist for her cookbook for cancer patients so I am also introducing her.

If you are someone living with cancer and are looking to help in some way, the NCCS is a great way to help. I do not do as much on the advocacy side myself but am happy to help with their events and in other ways locally. Every little bit helps.

Be Bold, Be Bald Day

October 17th is national be bold, be bald day (www.beboldbebald.org). I had never heard of it before this morning but its the 6th annual. I am not so sure how I feel about this.

If you are a supporter, you get to wear a lovely bald cap (which looks nothing like a bald head) to show your support of people who have lost their hair as a result of cancer treatment. Once you sign up you can order your kit of a bald cap and sign up sheets or you can order bulk quantities of bald caps for your team.

You can sign up your organization to be a beneficiary of the BBBB effort. Then you will receive about 75% of what was raised by your supporters.

I have decided I have two problems with this effort:

1. All the smiling people wearing ugly bald caps over long hair do not make me think of cancer patients. 
2. 25% of the amounts raised don't make it to you.

I have a friend of mine who shaved his head to show support for someone with cancer. That is what I call bald. But it still doesn't have that chemo pallor we all know and love. And its not worth 25% of your money to wear an ugly bald cap.

How ugly are these bald caps? this is a picture of actress Kathy Bates wearing one of these.


Now that I have written all this I guess I have decided I don't really like this much at all. I like the solidarity but that's about it.

Its not a tumor....

So life in cancerland is basically summed up by the one thought: "will it come back?"

As this child helpfully tells us in Kindergarten Cop, that is the one thing we can't get out of our heads.

Every ache and pain could be a something, meaning a bad something. We have to learn is how to balance that thought. Sometimes helpful people say wonderful, well meaning things like this to us which help raise our cancer-cootie-concern-level. Or sometimes a peak inside our insides in an MRI, PET or CT scan gives us bad news. At which point the cancerland roller coaster starts going up the really steep hill and becomes a whirling twisting ride until we hopefully can get back to the smaller hills.

No I am fine but this video popped up on my radar the other day and it makes a valid point.

Passports should be required for Cancerland

Cancerland should require passports, visas, and planning. Its a strange world of different cultures, languages, and mystery. The never ending wait until the next scan, procedure, adventure. We'll wait and see what the next tests show and then decide on the next steps. I have tried to describe it before but never come close. This is the absolute best description of life in cancerland in the hospital I have seen:

"At diagnosis, incomprehensible words resound — HER2-positive, stromal, non-small cell, BRAF, astrocytoma, myeloma, lymphoma, sarcoma— followed by equally baffling prescriptions of drugs that have two names. Hours are badly spent waiting in interior reception areas, near stunned people in wheelchairs and dazed fish aimlessly swimming in a tank beneath a television (perpetually tuned on to a dismal news channel).

After a bed is assigned for some necessary procedure, most slip on skimpy robes — the snap type impossible to snap, the tie type impossible to tie. Why are they constructed so as to gape and expose the naked front or back without providing warmth against the polar climate? "

Read the whole thing here and then you might have a clue if you have never been there.

This is what life in cancerland while at the hospital. The problem is you never really get to leave it once treatment ends.