Let's go back to the 'why me' conversation for a minute

At some point along the denial slope of coping with your diagnosis, you sit there and ponder 'why me'? Why did I get this ailment?

We learn through this article that it can have something to do with where you  live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:

And which are the top states with the highest rates of breast cancer?

1. New Hampshire (141.7 incidences per 100,000 people)
2. Massachusetts (135.5)
3. Connecticut (135.2)
4. Minnesota (135.1)
5. Washington (133.9)

I feel so lucky that I  live in Massachusetts with the second highest rate. But wait, I already have it so I don't have to worry. Unless we are talkingal recurrences.

As the article's author writes:

"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."

But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.

So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.

'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.

The cancer patient's interpretation of the doctor's advice

I came upon this article by a surgeon who has partnered with some cancer patients to come up with this advice when you are blindsided by cancer. While I agree with it overall, of course I have a few comments.

His advice is summarized as:

• Take a breath, seriously
• Own your cancer
• Don't run to the internet
• Select your physician partners
• Understand two critical features of your cancer

I agree with to take a breath and try to relax.  You are not going to die tomorrow (unless the bus doesn't miss). You have time to breathe and try to figure out what is right for you. You can take the time to absorb with what you have just learned. Go home, sit down and think about what you have learned and what you want to know. Then you can get back with your doctor for more information and options.

Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.

I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.

I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.

Two critical features about your cancer are:

"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."

This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:

You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.

Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.

Let's go back to the 'why me' conversation for a minute

At some point along the denial slope of coping with your diagnosis, you sit there and ponder 'why me'? Why did I get this ailment?

We learn through this article that it can have something to do with where you  live. Look at this lovely map showing rates of breast cancer diagnosis per 100,000 women:

And which are the top states with the highest rates of breast cancer?

1. New Hampshire (141.7 incidences per 100,000 people)
2. Massachusetts (135.5)
3. Connecticut (135.2)
4. Minnesota (135.1)
5. Washington (133.9)

I feel so lucky that I  live in Massachusetts with the second highest rate. But wait, I already have it so I don't have to worry. Unless we are talkingal recurrences.

As the article's author writes:

"There's not too much in common with these states other than the fact that they're in the upper half of the country (from a geographic standpoint), which leads me to one of my key points about breast cancer: Researchers aren't exactly sure why some women get breast cancer and others don't. Don't get me wrong; doctors do have a general idea about some of the primary risk factors for breast cancer, which include age, genetics, whether or not a patient is a smoker and/or is overweight, and even whether or not hormone replacement therapy was previously used. But, the fact remains that there's no certainty in determining whether or not one woman will get breast cancer and another one won't."

But maybe we can say the Bible Belt and the Mormons drink less than the rest of the country so maybe they have a reduced risk factor which helps keep their breast cancer rates down. But its all conjecture on my part because it hasn't been figured out.

So if we go back to the original 'why me' question, all we can say is there are still no answers. Crap. It is just a crapshoot.

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.

A brief list of fibromylagia symptoms

[Note I did not write this list. It was on Facebook shared by Creaky Joints. But I find it to be very true.]
I have highlighted the ones that I experience regularly. So if you ever wonder how my day is going, just think about this list.

1. PAIN- in the muscle: often described as aching, burning, throbbing, gnawing, shooting, tingling. Almost always exacerbated by exercise and may or may not be present at rest. Can be migratory and differing from day to day.
2. FATIGUE- From feeling tired to exhausted and requiring rest periods during the day.
3. SLEEP DISTURBANCE- not being able to fall asleep and or able to stay asleep. Unrefreshing sleep patterns " feels like I haven't slept."
4. PARESTHESIA- numbness or tingling. ( non dermatomal)
5. DEPRESSION- most often reactive as with chronic pain condition.
6. ANXIETY- may include panic attacks.
7. PERSONALITY CHANGES- usually a worsening of a previous tendency.
8. MOOD SWINGS
9. SUBJECTIVE SWELLING OF EXTREMITIES- i.e. feels swollen but no-one can find anything.
10. HEADACHES- tension and or migraine.
11. COGNITIVE FUNCTION PROBLEMS: calculation difficulties, memory disturbances, spatial disorientation, difficulty with concentration, short term memory loss.
12. FREQUENT UNUSUAL NIGHTMARES- or being unable to dream.
13. DYSTONIA- stiff muscles due to involuntary contracture. Difficulty in moving tongue to speak.
14. FREQUENTLY SAYING WRONG WORDS
15. BURNING SENSATIONS
16. LIGHT HEADEDNESS - "Fibro Fog", spaced out, cloudy.
17. MORNING STIFFNESS
18. EASY BRUISING
19. MILD BUTTERFLY RASH- (LUPUS TYPE) May be photo sensitive.
20. NEUROGENIC INFLAMMATION- rashes, may be severe itching. NI causes the symptoms and signs of Dermatographia.
21. DISEQUILIBRIUM- Vertigo
22. MUSCLE WEAKNESS- variable with no "objective" abnormality to formal testing.
23. SCIATICA- like pain
24. PHOTOPHOBIA- Intolerance of bright lights.
25. ALTERATION OF TASTE, SMELL and HEARING.
26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS.
27. DECREASED PAINFUL SOUND THRESHOLD.
28. TINNITUS- ringing in the ears.
29. OCCASIONAL EXAGGERATED NYSTAGMUS- involuntary rapid movement of the eye ball.
30. CHANGES IN VISUAL ACUITY- impaired function of the smooth muscle used for focus as well as skeletal muscles for tracking.
31. INTOLERANCE OF ALCOHOL
32. ENHANCEMENT OF MEDICATION SIDE EFFECTS
33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS
34. WEIGHT CHANGES- usually gained due to the lack of exercise through pain and or tricyclic antidepressants
35. RESTLESS LEGS
36. HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar falls)
37. POSSIBLE CARBOHYDRATE INTOLERANCE
38. SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)
39. HEARTBURN- secondary to I.B.S.
40. SUB-NORMAL TEMPERATURE
41. NIGHT SWEATS.
42. SENSITIVE TO TEMPERATURE EXTREMES
43. BREATHING DIFFICULTIES
44. HEART MURMUR-Mitral Valve Prolapse appears to be more symptomatic in FM than normal.
45. IMPOTENCE- reactive and occasionally.
46. SEVERE PREMENSTRUAL SYNDROME
47. FREQUENT VAGINAL YEAST INFECTIONS.
48. MUSCLE SPASM- twitching.
49. NON-CARDIAC CHEST PAIN- which may simulate cardiac disorder.
50. PELVIC PAIN.
51. ABDOMINAL WALL PAIN.
52. DRY EYES AND MOUTH.
53. TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone.
54. RAYNAUD'S- like symptoms.
55. CARPAL TUNNEL SYNDROME-possible related condition.
56. HAIR LOSS-secondary to psychological stress from FM.
57. VULVODYNIA- Vulvar discomfort or pain, burning, stinging and irritation.
58. PLANTAR ARCH-or heel pain. Exacerbated in FM.

This list of symptoms has been correlated by the Arthritis Foundation S.A.

So I have just a few, well some, maybe several. What the hell, I have a whole bunch. I will not highlight my 'favorites'. We will just say, they all suck.

Things cancer has taught me

I found an article written about what she learned from her mother's cancer. I can tell you its also things I have learned:

1. Doctors do not have all the answers but that can be okay. I think we are taught that doctors know everything and will have the answer for every ache and pain. But with cancer we quickly learn they do not. But that can be okay. We can educate ourselves and remain satisfied with our care. Also we cannot expect the doctors to make the big decisions for us. They suggest courses of treatment but we can make our own decisions as to which ones to choose.
   I have learned not to follow blindly the medical guidance but to question and discuss decisions in ways I had never thought I would.
2. Sometimes patients don't want to talk about their cancer or other ailment. We are people. We do not live on the live reality station called "Cancer 24/7". We go to the grocery store, we shop on line, we go out to dinner, we have friends, we do laundry. Its sort of like the pages in People magazine where real stars are caught doing normal things - like playing in the park with their children or pumping gas.
   Cancer people are people too. So stop asking us how we "really" feel (with that knowing wink) every time you see us. Its annoying after a while.
3. There are many people can't deal with a cancer diagnosis. Those friends that brought you home made chicken noodle soup when you had the flu? Forget them, you may never see them again. The friends who stick by you are your real friends. You need to learn to make new friends who aren't scared of your diagnosis.
4. People are changed by their cancer diagnosis. There is some mystery about this new normal they are supposed to achieve (that doesn't really exist) but a cancer diagnosis is basically a life changing event. Cancer people have no control over this but they really do learn about what is more important in life and how physical limitations can change them.
5. Caregivers are also affected by the cancer diagnosis. They do not realize about the bonds they have to the patient and how the other person changes will affect them as well.

I have learned more but this is a start. A cancer diagnosis should come with an instruction booklet so we can find out what we are experiencing is normal.

Coping or not

Sometimes life just gets very complicated, full of ups and downs, stress and more stress. I don't cope as well these days as I used to. In a spurt of optimism this summer, I told my therapist I didn't want to see her monthly but every six weeks instead.

Then every thing around me has gone to hell in a hand basket so to speak. I have some new issues with my ailments so the medical roller coaster keeps on going. I have family members who have new health issues. I volunteered for a huge project which ends next week.

Its peak craft fair season and I have a fair every other weekend. And one car had its check engine light start flashing, the other car - does it need snow tires? What about bills - too many to pay between sequester and shut down pay cuts? And, and, and, and..... Eeeekkkk!

I finally go back to see my therapist tomorrow. I think I have a list of issues to discuss with her - maybe a relatively long list even.

But I am coping. I think. I feel like I have a million overscheduled days in a row now in my life. I think I need a vacation - but that's not happening for a while. Crap.

The cancer patient's interpretation of the doctor's advice

I came upon this article by a surgeon who has partnered with some cancer patients to come up with this advice when you are blindsided by cancer. While I agree with it overall, of course I have a few comments.

His advice is summarized as:

• Take a breath, seriously
• Own your cancer
• Don't run to the internet
• Select your physician partners
• Understand two critical features of your cancer

I agree with to take a breath and try to relax.  You are not going to die tomorrow (unless the bus doesn't miss). You have time to breathe and try to figure out what is right for you. You can take the time to absorb with what you have just learned. Go home, sit down and think about what you have learned and what you want to know. Then you can get back with your doctor for more information and options.

Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.

I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.

I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.

Two critical features about your cancer are:

"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."

This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:

You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.

Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.

'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.

But you don't look sick

One of the first complaints I heard from other cancer people was that how could they have such a bad thing when they didn't look sick? To this day, I may feel like crap but I don't really look sick.

If you have cancer, you usually don't look sick unless you are in the middle of chemo that gives you that lovely pallor and hair loss. Some chemos don't even give you that look these days. I met a woman a couple of years ago with stage IV lung cancer who looked great and was on an oral chemo. She said she took a daily pill and felt pretty good as well.

We are wired to look for visible ailments in people. Do you ever look at someone getting out of a car with a handicapped placard who looks fine and wonder what is really wrong with them? Maybe its a respiratory ailment or heart condition, but we are suspicious. We expect to see someone with a few medical 'accoutrements' (how's that for sneaking in a big word so early in the day?) such as a cane, walker, etc.

If we hear someone has cancer, we expect to see a pale face with a few straggles of hair peeking out from under a hat or scarf, who is rail thin. But that is less common than the past. If you hang out in the waiting room at the oncology department, you see more people like that but certainly not everyone.


Most people don't realize how many ailments I have. When I had my double ear infection this summer, I was informed I looked pale. When I wear my wrist split for tennis elbow/arthritis, people regularly ask me what's wrong - even total strangers. Maybe I need a full body cast for people to get the point.

A cancer diagnosis is not time to start using the past tense

Yesterday Curt Schilling, former NBL player for the Boston Red Sox and elsewhere, announced he was diagnosed with cancer. He did not say what kind of cancer nor his prognosis, which is really no one's business but his own.

And the media immediately started using the past tense when speaking about him and eulogizing him.

Hello! A cancer diagnosis is not the time to start putting someone in the ground. It is a time to give them respectful privacy so they can deal with their illness and its treatment.

According to this morning's news, he is 'dealing with a health crisis'. Well, yes its not a good thing but let the man have some peace while he copes. And he's still here.

Tips for surviving cancer

Here they are for the 20 somethings and the rest of us.

1. Surround yourself with good people.
2. Buy yourself something special - besides a cancer wig. I have a nice fancy watch as a treat after chemo was over.
3. Play that cancer card...
4. Expose yourself to meaningless and funny entertainment.
5. Keep it real, you have a right to feel shitty. And if you are with good people they will  understand.

 Life is too short not to make it as enjoyable as possible.