No Watching...

Yesterday I received a phone call from a friend who was just diagnosed with breast cancer.  I could tell that she was swirling in her own personal tornado.  I experienced the same personal weather event when I learned about my cancer.  It is a very strange feeling, and our conversation brought it back, even after two years.  It is like you are walking, but your feet can't find traction because you are a few inches off the ground.

After we talked a little, I discovered that her surgeon has been "watching" this growth in her breast for two years.  Her surgeon wanted to wait and see if the growth changes.  Her surgeon never biopsied this growth, until two years later, afater it blew up into cancer.  Would you believe that I have heard similar stories from other women?  As a matter of fact, my mom has a very good friend, who many years ago had the best care from a highly-regarded physician in Northern California, and he decided to just "watch her lump."   Guess what?  The lump turned into full-blown breast cancer that resulted in a mastectomy with horrible complications.  This make me crazy! 

Okay ladies....If a doctor says that he/she wants to "wait and watch" your lump or foreign matter in your breast, you tell your doctor to "wait and watch" as you walk out the door to find another doctor!  Demand a biopsy!  Demand to have it removed!  Biopsies don't hurt, and they don't take much time in comparison to cancer treatment. Insurance companies would rather pay for a biopsy and early removal than full-blown cancer treatments.  Thriteen years ago, before Molly was born, I demanded that a lump be removed from my left breast when the surgeon told me it was "nothing," just a calcified growth.  How can something be nothing?  Something is something, and it can turn into something worse.  My lump wasn't cancerous, but how does anyone know that it wouldn't have become cancer?  Ladies, doctors do not have crystal balls that can tell if something becomes cancer! (Although some act like they do.  Run away from these doctors!  Don't walk, run!) Take ownership of your care, and demand the biopsy and removal!  The only way that you can be 100% guaranteed that you will not get breast cancer from this foregin matter is by having it removed!  Period.

Deep breath, Keval.  Deep breaths.

Whacky thought for the day...
Why are the ends of bread loaves called heals?

Conspiracy Theory...

One interesting thing about cancer is that many people outside the medical field without cancer treatment experience,  have very strong opinions about treatment, testing, medications, wigs,  and other related items.  I have no problem with people sharing their opinions because if I don't agree, I just tune them out and work on a mental grocery list or other very important items.  However, yesterday, someone who has never had breast cancer, shared her theory of cancer with me, and I was absolutely shocked!  I do not know from what planet she comes, but she was way, way, way off base. 

Let me set up the situation for the conversation...
Yesterday I walked around town for 6 hours, following up on letters I sent to local businesses about donating to the American Cancer Society via 50 SHADES OF PINK.  So far I have donations from 18 business in Manchester and Essex:  Allen's Pharmacy, Cala's, Christine's Coffee Cup, Costello Construction, Cross Towing,  Found Objects, Four Season's Cleaners, The Landing,  Logue Insurance, Mahri's, Manchester Electric, Manchester Hardware, Mimi, Nor'east Cleaners, Remco Corporation, Standley's Garage, The White Lilac, and Zak's.  In most cases, it was fun to stop and chat with different people.  In 6 hours, I only covered 23 of 70 business, and this was without a break.  As you can surmise, some stops entailed a serious volume of chat.

Naturally, at all the businesses I had a cancer-related conversation.  One woman I spoke to told me that she does not believe in mammograms because they are often the cause of cancer.  Logically, I though she was concerned about the radiation from the x-ray.  But when I asked about radiation concerns, she said no, that it was the pressure of the plates during the mammogram that can cause cancer.  What? - I thought  "Really, are you kidding?"  Then she drifted way beyond left field when she told me that some believe there is a conspiracy theory behind cancer, and that doctors, hospitals and pharmaceutical companies are"in it" together.  What? What?? What???  She actually believes that cures for cancer have not been discovered because there is too much money involved.  What????  Inside I was thinking, "You are a total whack job!  Please don't spread these complete lies to others because someone even more crazy than your might actually believe your crap."  Outside I said, "I believe that my oncologist, radiation oncologist, and surgeons would be thrilled if they had fewer patients due to discoveries of cures."  Then I slowly backed away.  And, by the way, she did not donate to the American Cancer Society...probably because they are at the ring leader of this whole cancer conspiracy.

Whacky thought of the day...
What do you do when someone says something totally outrageous and crazy?  Do you challenge them, or do you realize that crazy people are just crazy, so you say nothing?

50 SHADES OF PINK...

Now get your mind out of the gutter...50 SHADES OF PINK refers to the team I formed for my first cancer walk on Sunday, October 14.  I am walking in the American Cancer Society's Making Strides Against Breast Cancer walk.  This Boston walk is the oldest and largest breast cancer walk in the US.  They expect about 45,000 people...which is nine times the size of my town.

I chose to form 50 SHADES OF PINK  and participate in this walk because the American Cancer Society provides invaluable services for women with cancer: they provide access to mammograms for all women.; they provide transportation to treatment for women who need it;  they are available 24 hours a day, 7 days a week; they provide a place to stay if treatment is far from home; they provide wigs for hair loss from chemo; etc. etc etc.  1 out of every 2 women diagnosed with breast cancer reaches out to the American Cancer Society.

The American Cancer Society is the leader in the fight to end breast cancer.  They invest more in breast cancer research than any other cancer type - to find, prevent, treat, and cure the disease.

1 in 8 women will be diagnosed with invasive breast cancer.  The chance of dying from breast cancer is 1 in 36, but the rates are going down.  This is because women are detecting the cancer earlier and treatments are constantly improving.  Today there are more than 2.5 million breast cancer survivors in the United States....that is a lot of bald women walking around at any one time!

So, how can you help lower these statistics?
Donate to the American  Cancer Society via 50 SHADES OF PINK.  Every dollar matters.  No amount is too small (or too large!)  Every donation helps save a life!
Click on here to donate:  50 SHADES OF PINK DONATION PAGE

Thank you for helping save the life of a mom, sister, daughter or wife!

Whacky thought for the day...
Why do peanut butter and jelly sandwiches taste better when the bread is folded vs. cut?

The Service...

On Saturday I attended my first funeral service for someone that died from breast cancer.  I've attended countless funerals, but never for someone that died from breast cancer.  She was part of my Encore group at the YWCA.  When I walked into the foyer of the church, I got a little choked up when I saw about 10 other women from Encore....we had lost "one of us."

The service was very nice, but it is always a little peculiar to attend a ceremony at another denomination.  I spend so much time looking around, I look like a tourist.  So as I was sitting in this unfamiliar setting, my mind began to wander about my own funeral...I know, it sounds a little macabre.   I decided that I want balloons at my funeral!  Don't get me wrong, I love flowers and want them too,  but balloons would be fun.  Balloons are happy and make everyone smile.  If I die from breast cancer, I want all pink balloons.  If I go as an old crazy lady in her 90's- my preference, any color would do, but not black; they must be happy colors.  Wouldn't it be funny is one popped during the service?  If that happens, you can know that it was me waking everyone up.

I hope there is a lot of laughter at my funeral too.  I would rather people cry from gut-splitting laughter than from grief.  Although, I love the way Josh Groban sings, "To Where You Are, " which guarantees not a dry eye in the place.  Kleenex please.

Whacky thought for the day...
Why are flat screen tv's replacing artwork?
I recently went to dinner with a friend at fancy, smancy Ruth's Chris steak house in Boston.  In our little dining room (one of several) a flat screen tv hung between two pieces of art!  I thought..."are you kidding?"  If I am paying premium prices for steak and creamy potatoes, do I need to look at a tv on the wall?  I could go to a pub for a greasy burger and fries if I want that experience.  (Fortunately, I didn't pay for dinner, so, I shouldn't complain.)

Encore...

The YWCA sponsor's a program entitled Encore or ENCOREplus -same program, two different names.  It is a free exercise and support program for women with breast cancer.  Some Encore groups include cervical cancer.  You do not need to be a member of the YWCA to participate.  I saw a flier for the Encore program on a bulletin board in my oncologist's examination room.  Actually, this is where I find out all the good information about support groups. Thank you Dr. Banana Split and MGH.

 I joined the closest Encore group at the Newburyport YWCA, about a 45 minute drive from home.  The program offers exercise and support/informational programs.  Because Newburyport can be a bit of a drive, I just attend the exercise programs, (although I haven't been in a few months - don't ask.)  Anyway, when I heard it was exercises in a warm water pool, I thought...this is just for old people. The cynical side of me envisioned a bunch of lopsided or flat-chested old ladies walking around, waving their arms.  Boy, was I wrong!  First of all, there were women from early 30's to 60's, and every woman looked absolutely wonderful!  I was the only lopsided woman, and there were a few that had doubles, but looked perfectly normal.  We use foam dumbbells in different sizes that weigh nothing out of the water, but give your arms, chest, stomach and other muscles a great workout under water.  I was huffing and puffing a few times.  I use a lot of core muscle to keep me grounded in the pool; when the dumbbells are under water, your body wants to float up.  I found that this type of exercised did wonders for my range of movement of my left arm.  It really helped the tightness across my left chest.

Not only is this a great way to get exercise, it is a fabulous way to connect with other women who deal with breast cancer.  We have a lot of laughs that others wouldn't understand or would make them uncomfortable.  I met another woman who had a tram like me.  I was so excited to talk with her because she is the first person who knew what I had been through.  Like me, using hindsight she is unsure if she would have had the tram surgery.  The camaraderie is well worth the 45 minute drive.  (As I type this, I realize how much I miss it.)  For fun, I decided to bring tiaras for everyone to wear during one session.  Why?  Why not?  (It helps having two girls who loved dress-up.)  It turns out that we were filmed that day for an Encore video.  If I knew were were being filmed, I would have put on make-up and worn my pearls!  Ugh.

Encore was so important to me that I even drove through the one terrible snowstorm we had this winter to attend Encore. Unfortunately, when I arrived I learned that it was cancelled due to the storm, but I stayed and worked out. From inside the pool I could look outside a window and see snow falling on the tall, white steeple of a nearby church...it was a "New England moment."

After one session, Barbara Hart, a fellow "Encorian" - my made-up word, and I stayed in the pool an additional 30 minutes to chat about "stuff."  Her husband joined us and we talked about treatments, and how Barbara's breast cancer moved to her lungs.  She looked terrific!  I would have never guessed that she was in treatment for lung cancer.   It's all about attitude!!!

A couple of the Encore ladies and I made a short film supporting the Encore Program.  You can view it here (Don't be shocked that I look like I had an airhose fill me up - you know how women say they still have their "baby fat" from pregnancy, I am claiming "chemo fat" - also I didn't know they were filming so I am wearing no make-up - scarey! - okay, enough excuses - here's the link):
http://www.ywcanewburyport.org/encore.html

Encore programs are all over the world, and it takes a little work to find one in your area.  If you type in "YWCA encore", the first link you will see is for Australia.  Although I thought it looked like a great program, the commute is a bit greater than 45 minutes.    I also saw Sacramento, Gettysburg, Santa Monica, etc. 

I feel good physically and emotionally after Encore.  Spread the word about Encore.

Solemn thought for the day...
This entry is dedicated to Barbara Hart, an Encore film star and comrade, who died last week from breast and lung cancer.  You left an imprint on my life.  My prayers are with you, Barbara.

Scares...

Last October I had my first scare. It had nothing to do with Halloween or a bad hair day...

I went for my one year check-up, (about 4 months late,)with my surgeon, Dr. T. Best. Dr. T. Best would be an amazing poker player because she always has a pleasant look on her face no matter what the situation. However, she dropped a card, losing her poker face when she began to examine me.  As she studied my reconstructed and radiated left breast, her eyes and forehead said, "That doesn't look so good." As she was prodding around her "hmmmming" said, "I don't like what I see." And then, her words actually said, "I think I would like to get a biopsy of a couple of spots. It doesn't look or feel quite right. I would like to do them right away. Can you stay around today while I schedule an appointment across the way?" My heart sunk down lower than any previous drop. I shuffled outside the office with my scheduled appointment for 3 hours later. I sat down on the first bench in the hallway and went numb. Everything about me froze. All I could hear was the sound of air swirling past my eardrum. I though I was going to cry, but I just sat, staring straight ahead. I think tears may have welled up in my eyes, but I don't remember.

After I snapped myself out of it, ate a decent burrito from a nearby tacqueria, and sat in the MGH healing garden, I went to another building for the biopsy. The pathologist reminded me of The Absent Professor. She had a brand new, state of the art ultrasound machine, but she was flustered because didn't know how to use it, so she used her old machine. After numbing a couple of locations (my second numbing for the day) she inserted huge needles, and then dug around with them. I felt like a turkey on Thanksgiving with the chef swirling the turkey baster under the skin. The results came back negative for whatever they were looking for that could have been positive... more cancer, I guess.

I never worried about cancer returning until that day in October. I have an unjustified fear that if cancer returns, it comes back worse than in the first place. To me, it seems like more people die from a second or third round than the first. (I know, I am probably wrong, but I'll pass on this research.) .

My second scare was early this spring. I had a lady issue - (I don't know why I am embarrassed to write the word spotting.) Dr. Banana S. sent me for an internal ultrasound...I will let you guess what that might entail. I had one long ago, at the beginning of this cancer dance, so I was prepared. However, this time I didn't need to drink gallons of water and slosh in with a full blatter. I asked the tech at MGH why I didn't need to drink the water.  She responded that they have not used that technique for several years. She said that the bigger hospitals have technology that allows them to see what they need without a full bladder. Really?  Why doesn't everyone have that technology? A week later I get a call Dr. Banana S's office saying that the ultrasound was a little abnormal and that she wanted me to get a biopsy with an OB-GYN. As you can imagine, this biopsy was a little different than the scare #1 biopsy. Because I only had c-sections, my cervical door was never opened, making it difficult for Dr. OBGYN to get a biopsy. So, lucky me, I had to get dilated - and I don't mean the eyes that require the stylish, senior-citizen sunglasses. I can definitively say that this was without a doubt, the absolute worst medical experience ever! The pain and discomfort was so awful that I became completely nauseous. (If Riley would have just opened the door when I was in labor, I could have avoided this hell.) The results came back negative for whatever they were looking for the could have been positive...more cancer, I guess.

I don't want to think that I am a hypochondriac, but I now worry much more often-than I care to admit- about cancer returning. I've had a pain in my wrist for over 3 months. I went to my new primary care - who is not long for my world - and she had no idea what was causing the pain. I told her about my recent Zometa infusion, and she responded, "Why are you taking Zometa?" Duh...cancer, remember the visit when I talked to you about it atgreat lengths? She said, "Oh I guess I should look at your chart." (Can someone please tell me why I can find the best cancer doctors but keep striking out on primary care physicians?!) On my regularly scheduled visit with Dr. Banana S. in May, I asked her about the pain because I remember that she once said that breast cancer often returns in the bones. So, I naturally thought I now have bone cancer - self-inflicted scare #3. She said that it is rare for bone cancer to first show up in an extremity. Usually it manifests in the torso. However, she once saw it show up in an ankle. I still have the pain, and I still don't know exactly what is causing it. Dr. Banana S. thought that it appeared like a nerve issue. Boy, do I have a lot of nerve issues...someone always seems to be stepping on my last one!

My tooth and jaw have been hurting for a couple of weeks. Finally, the pain reached a crescendo and I had to do something about it...root canal. Is the jaw part of the torso? Yes, I thought, can you get cancer in the jaw? - self-inflicted scare #4. When I drove home from the emergency root canal, I was in terrible pain - the entire left side of my face, ear and jaw were throbbing.. I went through the medicine cabinet like a tornado, looking for the Vicodin that I never took with the cancer surgery. Chubba saw me crying and was worried. He asked, "They didn't find cancer in the jaw, did they?" It appears that I am not the only one worried about cancer returning. Wouldn't you know that just a couple of days ago someone told me about a friend with cancer in their jaw. Swell.

I had to go to two different locations for my dead tooth.  Each dentist/endodontist had to look over my medical history.  Strangely, they both asked me the exact same question, "Are you completely clean?"  I assumed they meant of cancer because I did shower before my appointments.  I responded, "I hope so."  The closest someone has said that I was completely clean was when my surgeon said that she believes she got it all.  I don't think any oncologist or any other doctor would ever be so bold to say that someone is completely free and clear of cancer.

Whacky thought of the day...
Can you sweat in a swimming pool?

Whacky thought of the day #2...
I just saw that this is my 100th post.  Thank you to those who have hung on through all my rambles!

Michael Jackson...

Not only do I have issues with lymphedema, I also deal with fibrosis and neuropathy on a daily basis... and that is a whole bunch of syllables.  (Did you ever notice that the more syllables a medical condition has, the scarier it sounds?  With the exception of that two-syllable word....cancer.)

Neuropathy is when my arm tingles like it has fallen asleep.  It only takes a little cat nap, and tingles for a few minutes.  The one difference between neuropathy and when your arm falls asleep, is that neuropathy doesn't hurt when it wakes up.  There is something a little strange about this whole neuropathy thing...I kept telling my doctors , Dr. Dad and Dr. Banana Split that my arm felt like it was falling asleep and tingles, but they never responded with the name of the condition, the cause, nor asked me any questions about it.  It was as if I was telling them I had a bad cold.  I kept thinking, "Do they think I'm making this up?  Why aren't they commenting on my tingly arm?"    This is another example of the importance of asking doctors lots of questions, and don't stop until you get an answer.  Not until I attended the Livestrong Transitions program, did I learn that tingly feeling was an actual condition with a name.  Neuropathy can be a side effect of radiation.  Fortunately, this side effect has lessened quite a bit.  At one time my arm fell asleep several times a day, but not it only falls asleep about two times a week.

The other radiation-causing side effect if fibrosis.  There are several different types of fibrosis, and I don't know the exact name of my condition.  My fibrosis presents itself as hard rocks in my belly boob- the reconstructed breast.  Under the skin are some spots that feel like hard rocks.  I also have some scaring from radiation burns that won't heal.  On one spot the skin keeps turning gray -dies - then becomes red, and then the process.repeats ...not so pretty, and a little uncomfortable.  Most of the time I don't feel the fibrosis, but sometimes, for unknown reasons (Doctors don't even know the reason,) they fibrosis hurts.  You will not believe the treatment for fibrosis......hyperbaric oxygen treatment!  What is that?...keep reading... 

When Dr. Dad told me that I needed hyperbaric oxygen treatment, I immediately responded, "You mean, like Michael Jackson?!"  If you are old enough, you will remember when Michael Jackson slept in a hyperbaric oxygen chamber - a metal  and glass coffin-like machine.  I then asked, "Will my voice go up an octave?  Will my skin get lighter" - which seems like an impossibility since I am just this side of albino. Dr. Dad went on to tell me about "oxygen bars"  ... a place where people belly up to a bar with oxygen masks.  What?!  I have never heard of such a place?  Am I living under a rock? (Another rock reference.)  If I'm going to belly up to a bar, it better have something more than oxygen.  He went on to tell me that these oxygen bars don't provide pure oxygen and cannot replace hyperbaric chambers.  Again...What?!  Who in this world with a medical condition would even think of such a bizarre way to treat it?    I recently learned that Michael Phelps is using some type of hyperbaric treatment.  What is it with the name Michael? 

Hyperbaric treatments centers are usually called "Wound Centers."  People with internal or external wounds that won't heal undergo hyperbaric oxygen treatment.  Older diabetics can be found in these centers.  The side effect of hyperbaric oxygen treatment for me is pretty scary...  If a little rogue cancer cell is hanging out waiting to do its thing, the oxygen could feed it.  Yikes!  I've already had a couple of scares (next blog) and I don't want to go down that cancer road again.  So, I put off calling The Wound Center for 7 months.

I finally visited the local "Wound Center" about 8 weeks ago, and I still haven't booked the beginning of treatment.   I know, I know...it will be fine, but there is a little tiny voice in my head that sounds scared..  The treatment is EVERYDAY, Monday - Friday, for SIX WEEKS!  I takes about 2 hours each time.  In the chamber, you cannot bring anything with you...no book, not iPod, nothing.  They have a satellite TV and DVD player.  A friend of mine, Costume Queen,  has every "Sex in The City" on DVD and offered to lend them to me since I never saw a single episode.  However, I am worried that it might be too racy to watch with techs and old diabetics around.  Maybe I should go safe with PBS Dowton Abbey.  You cannot wear any perfume, lotion or other products that might interfere with the pure oxygen.  The chamber gets pressurized to 60ish feet below sea level.  This is as close as I will ever get to scuba diving!  No sharks or scary fish in the chamber.  My other fear is claustrophobia.  It is a clear chamber, but still I'm surrounded in this big glass coffin.

Lovely way to spend a couple of hours...

Whacky thought for the day...
Can jewelry shrink?
Do you think weight gain and jewelry shrinkage are related?

It's Lymphedema Season!

This hot sticky weather marks the opening of Lymphedema Season for me.  About a year ago, my left hand puffed up so big that there were no trace of knuckles or lines in my skin.  It looked like someone blew air in my hand - like Shrek did with the frog.  The bummer was that my hand was swollen.  The good part was that my hand looked young again.

Lymphedema is when there is a blockage in the lymph vessels that drain fluid throughout the body.  (Yes, I just pulled this definition off a website.)  It is common occurrence for people who had lymph nodes removed during cancer surgery.  Breast cancer women get it in their arms.  Other types of cancer can get it in their legs.  My lymphedema is not painful.  However, I have heard that it can be quite uncomfortable. I went to a physical therapist for lymphatic massages.  I thought, this is great, insurance will pay for relaxing massages.  I was disappointed to discover that a lymphatic massage didn't involve a peaceful room, soothing music, scented oils and dim lights.   When the therapist, Magic Hands, began working on my arm, she said that my lymphatic fluid was like "honey."  I drove 30 minutes to see Magic Hands about 2-3 times a week for 5 weeks.

My lymphedema only kicks in when the weather is hot.  The heat and humidity puffs my hand up like a balloon.   I discovered that the cool, sometimes cold ocean water, helps.  My hand goes back to normal after a little while of bobbing around in the cold Atlantic Ocean.  My skin is blue, but my hand is the right size.

Flying is also an issue for people with lymphedema.  The pressurized cabin in the plane can make lymphedema people puff up.  When I flew to California last year,  my hand swelled up so badly, that I put my hand into a bag of ice - and I was wearing a sleeve! The ice helped a bit, although it didn't go completely back to normal.  The melting ice dripped all over the floor of the plane.  Fortunately, my flight attendant was very helpful.  Just throw out that "cancer card"  when you need a little extra help or attention.  It always works.

One way to keep lymphedema under control is to wear compression sleeves.  Magic Hands go me hooked up with a company called Lymphediva. Lymphediva makes the coolest looking compression sleeves!.  They don't look like those old lady compression stockings! As a matter of fact, I have been asked countless times if my left arm and hand are tattooed!  I was riding the T (subway) in Boston and this completely tattooed, multi-pierced guy turns to me and says, "Nice tat."  I simply replied "Thanks."  I didn't tell him that is was only a compression sleeve.  To him, I was cool. So when I got off the T, I walked up to Mass General with a little bit of a swagger.
Below are a couple of designs.  I  have the one in the middle.  I also have a black and white hibiscus floral print, a pretty pink one with the breast cancer butterfly logo, and a lime green floral print.  I decide to wear what works with my outfit, or matches my mood for the day.  
Check them out at http://www.lymphedivas.com/


       If you have deal with cancer stuff, why not do it in style?

Whacky thought for the day...
Is it better to vacuum before you dust, or dust before you vacuum?

Whacky thought for the day #2 related to #1...
How do those huge dust bunnies form in the house?  They are like tumbleweeds that pop up out of nowhere!

P.S.  I'm sorry that I have been MIA.  I've had a lot of whacky and wild cancer-related stuff happen in the last 12 months, so I have a lot to share.  Stay tuned...