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...

The Black Hole...

No doctor, no nurse, no social worker, and not even a fellow cancer survivor warned me about the free fall into a black hole that occurs months after the last cancer treatment. Depression? Yes. Feeling Lost? Yes. Wondering "what next?" Yes. A little angry? Yes. Going through life in a daze? Yes.

January of this year, two months after my last radiation, I began a free fall into an emotional and physical dark hole that lasted three months - it was very deep hole! As I was free falling, I knew something was not right, and I was worried the black hole was bottomless. I was pissed off that I could not find any information on what to expect after cancer treatment is done. Then, I saw a flier in the exam room at MGH for a program sponsored by LIVESTRONG called "Transitions: Moving Beyond Treatment." I called immediately to enroll in the six week program at MGH in Boston. For six Thursdays afternoons in May and June I took the train into Boston, and walked from North Station to the hospital. The travel, itself, felt like a transtion as I took a meditative train ride, and brisk walk through the busy streets of Boston to MGH.

The Transitions program covered physical and emotional health. It encompassed exercise, nutrition, and emotional well being. We were a group of 18 cancer survivors, men and women, ages 25-65, diverse backgrounds, people from at least 6 different countries, countless types of cancer, living active lives, and within one year of treatment. I was extremely relieved, and a bit angry, to discover that all of my fellow participants/cancer survivors tripped into the same black hole as me! I was relieved because it confirmed that I was not losing all my marbles. I was angry because none of us were warned about the black hole! Our stories had a common theme: cancer...treatment...black hole. Every single one of us!

The great news is that LIVESTRONG'S Transitions program provided a ladder to help us climb out of that damn hole. We all agreed that attending the program was one of the most important things we did for ourselves. We laughed. We teased each other - stupid cancer jibes. (For example, one woman had breast cancer three times. I turned to her and said, "Geez Lisa, you only have two boobs!) We cried. We supported each other and challenged each other. There were no pity parties!

Several experts spoke to our group: exercise trainers, nutritionists, social workers, psychiatrist, oncologists, etc. We participated in a variety of exercise programs: yoga, Quigong, stretching, aerobics, etc. I felt a little bad for the two oncologists because every person in our program kept asking "Why didn't you warn us about this terrible state we fell into after treatment?" I suggested to the oncologists that when they formulate a treatment plan, they should include the Transitions program. I told them that I felt Transitions was as important to my health as chemotherapy and radiation.

If you are interested in learning more about the LIVESTRONG transition program, click on the link below.
http://www.livestrong.org/What-We-Do/Our-Actions/Programs-Partnerships/Community-Engagement/How-To-Apply/Cancer-Transitions

Two weeks ago I was speaking to my trial nurse about the importance of the Transitions program. She thought that not all cancer patients needed this program because many of them don't have such a tough time after treatments. My answer to her was, "Garbage!" Most people don't talk about the depression or tough times because they are embarrassed. How do I know this? I was one of them. Why do you think it has taken me so long to write about it? Maybe those cancer people who do not live active lives might fall so deep into the hole, but believe me, even if it is a little pot hole, it's a hole.

I am a born again LIVESTRONG fan! I wear my yellow bracelet every day! I only wish someone had directed me to their website when I was first diagnosed. It has volumes of resources, programs, and support. They have a program that sends children of cancer patients to camp for free. It is run through colleges and universities. In Boston, MIT runs the program, taking kids to Camp Merrowvista in August. (Riley attended this wonderful camp with her entire 6th grade.) If I had known about this program last summer when I was going through chemotherapy, Riley and Molly would have enjoyed camp with other kids going through the same tough times.
Information on this program: http://www.livestrong.org/Search.aspx?SearchText=Camp

I have always been indifferent about Lance Armstrong and all the stories surrounding him. However, I find myself defending him. Unlike many successful athletes, he used his fame and fortune to help millions of people. Who cares about his social life and kids? Who cares about the allegations of using illegal performing enhancing drugs. (I cannot imagine how anyone who beat cancer, knowing it can come back at any time, would take a drug that would dramatically increase the chance of recurrence! (Jealousy is ugly.)) His foundation, LIVESTRONG, does not just focus on cancer in the United States, it supports programs all over the world!

It is time to come down from my yellow soap box.

If you see me swerving, I am avoiding a black hole.

Whacky thought for the day...
If you want to looked dressed up, just put on a stand pearls.
I can wear the exact same outfit two times, one day with pearls and one day without. Someone will always comment that I look nice on the day I threw on the pearls. No comments on the pearl-less days.
If guys wear pearls, they will receive comments too.

Another Hair Story...

It is funny how cancer people like to talk hair with one another. Both cancer patients and cancer workers talk about hair. Hair loss is the one common factor facing most cancer patients going through treatment, regardless of type or stage of their cancer. It is also a safe topic of conversation with someone who has cancer. When I was having chemotherapy, no one ever asked, "What are you in for?" or "What's your cocktail?" Instead the chit chat was usually about hair.

Last week I went in for some lab work. Routinely the techs as for my birth date to make sure I am the correct person. An older gentleman in the chair next to me said, "I wish that was my birth date!" "My youngest is your age!" I told him that he looked great. He replied, "My hair grew back curly." When my tech realized that I had a birthday coming soon, she asked what I was doing for my big day. I told her that I am going to color my hair because I cannot handle the gray any longer. (With the salt and pepper look, and the curls, I think my hair looks exactly like Jon Stewart! No woman wants to look like a male Jewish political comedian, although it looks good on him.) The older gentleman told me that I should color my hair pink. The tech jumped in and said, "She already did that!" Evidently my pink hair left an impression.

So, my hair is back to the color it was when I was much younger, but without the sun's highlights. Riley said that I look 20 years younger without the gray hair! I knew it! I knew the gray was all wrong!

Whacky thoughts for the day...
#1: If a man is bald before chemotherapy, does hair grow after chemotherapy? (I am going to ask Dr. Dad next week, and I'll post the answer.)

#2: Filling a pill box is good practice for playing the game mancala.

#3: It is March 25th and I had to scrape snow and ice off my windshield this morning!

#4: 50 does feel better than 49!

How Will I Know...

Early last week I had a follow up appointment with my oncologist, Dr. Banana Split. Because I can't remember what I did five minutes ago, I came armed with a list of questions. Unfortunately, I forgot the list at home, but I was able to recreate it in the parking lot. Number one on this list was my memory issue. My short term memory is nonexistent. Molly called to remind me to bring her inhaler to school in a hour, but I forgot. Riley called for her flute, but I forgot to bring it to her. I looked at the calendar and realized I had an appointment with Dr. Dad in two hours, but promptly forgot and missed the appointment. (I would be a great recipient of gossip because I could never remember enough to repeat it.) Dr. Split told me that I have "Chemo Brain." I thought...still? She said that it lasts a year. So...I have six more months of forgetfulness. I have resorted to placing post-it notes all over the kitchen cabinets. Now, I just need to remember to look at the notes.

The second on my list was a question about testing to see if the cancer returns. No one mentioned what is done to check on the status of the cancer cells that were supposed to be wiped out with chemotherapy and radiation; nor had I read anywhere about post-treatment tests. She said that other than yearly mammograms, no regular tests are administered to her breast cancer patients. I will get "half" a mammogram each year - meaning only on my right side. ("Half a mammogram" is my term, not the technical term.) On my left, reconstructed side, any cancer lump will be easily detected because it will present itself as a bump just under the surface of the skin. In the past, breast cancer patients were given two bone scans and one CT scan every year - that's a lot of nukes! But, studies showed that those with scans and those without scans showed no difference in detecting reoccurring cancer. Dr. Split said that we - she & I - will pay close attention to changes my body , i.e. joint pain, bone aches, constant headaches, sudden weight changes, etc. My oncologist has a low tolerance for these symptoms, and would order tests immediately. I am not sure if I feel too comfortable relying on myself to detect anything unusual with my body - it seems like I have aches and pains all the time. Plus, if I did have an odd pain, I'd probably forget what it was before I could report it! Until now, I thought my regular blood tests were screening for cancer , but I was wrong. The blood tests are to check my vitamin D levels, my thyroid, and other fun stuff. Honestly, I find the unknown much more scary than the known - the question of recurrence vs. treating it.

Also on my list was a question about some hard lumps and bruising skin on my reconstructed side. I told Dr. Split that I made an appointment with the plastic surgeon, Dr. Chief, for the following week, but she said this was Dr. Dad's issue, the radiation oncologist. (I know, it is hard to keep all these doctors straight.) Dr. Split called in Dr. Dad while I was there, and he said that fibrosis has formed because of the radiation. I now have 4 more pills to take daily. One of the pills is a pretty lavender color to add to my pill rainbow.

My hands fall asleep often. Dr. Split told me that I probably have carpal tunnel syndrome - a side effect of Tamoxifen - my daily, preventative cancer pill. Tamoxifen can dry out joints, resulting in carpal tunnel syndrome. The Tin Man and I have something in common. Maybe I should find an oil can. Now when I sleep at night, I wear wrist braces. I think I look Wonder Womanish with these things on my wrists. I might paint them red, white & blue and get some really cool white boots. It is odd how I can remember what Wonder Woman wore, but I can't remember if I brushed my teeth an hour ago!

Not only do I have Chemo Brain, I also have Chemo Curl. My once straight hair is growing back curly! If only it was the 80's - when perms were in fashion. The curliness combined with the gray makes me look like an old lady that just got a perm - except my hair is more white/gray than blue/gray.

If I could keep my body temperature from spiking all night - aka hot flashes - I might get a decent night of sleep. I am sure that at any moment I am going to spontaneously combust! It was 5 degrees last night, and I slept in a tank top! You gotta love that Tamoxifen.

Dr. Banana Split is sending me back to physical therapy, but with a different therapist. I guess I failed the first time. Oh joy!

Whacky thought for the day...
Do you think Wonder Woman had carpal tunnel syndrome? She also had curly hair, and perfect, reconstructed-type breasts. I wonder...

Depression Confession...

Last June, when I had a follow-up appointment with my surgeon, Dr. T. Best, she said something to me that didn't make sense at the time. She said that after all this is over, I might not feel myself, and to not put up with this garbage. She continued to say that if I start feeling depressed or anxious to get some help, and not be ashamed. She also told me that I could come see her if I wanted her help. ( Dr. T. Best is an amazing physician.)

Doesn't it make sense that after all the treatments a cancer patient would feel elation and not depression? I felt better during chemotherapy than I do now.

Why is it easier to talk about constipation that depression? They are both physiological side effects. Since the end of my radiation, I have had a little issue with depression - nothing major like I am going to jump off a bridge. Just some days I just wanted to hang out at home and not go anywhere, or talk to anyone other than family. Some days I felt like sleeping all the time. Sometimes I just sat by the fire and stared out the window. In December I received a new addition to my pill box that helps me get through this stage of cancer recovery. It is a beautiful, bright pink color, called Effexor. Now I have a rainbow of colors in my pill box - white, green, pink, and yellow.

It is strange how literature for cancer therapy focuses on all side effects but depression. There is very little written about depression; the signals, and when or how to get help. However, there are multiple pages, even complete pamphlets dedicated to controlling nausea by what your eat, or dealing with constipation.

Llama Lover, told me that she was caught off guard with the same feelings after she finished her cancer treatments. She found solace in a tiny pill called Zoloft. She's a year ahead of me in this journey, and she is off it now.

Whacky thought for the day...
Why is there such a stigma placed on depression, but not other physiological issues like epilepsy, diabetes, heart disease or cancer?

Dates...

I am not very good at remembering dates or statistics. I do not know that day of my first date with Chubba, and I barely remember birthdays of nieces and nephews. I do not know how much my girls weighed at birth or the exact time they were born. I cannot even remember the date of my mastectomy - sometime in mid May. However, I do remember that one year ago today, I was told that I might have breast cancer. February 12 is etched into my memory.

If you are reading this, you are probably saying to yourself, I can't believe that a year has passed so quickly. Sometimes I feel like the year flew by, and other times if crawled along...like the tortoise and the hare.

Speaking of hair...My hair is now about 1 & 3/4 inches/4.5cm long. It is not as shiny and healthy looking as I had hoped. The color still looks like I have been standing outside in a snow storm. I am dying to dye it. Soon, very soon. I also have curls in the back at the bottom - I look like a MLB ball player's curly hair sticking out from under his baseball cap, except I am not wearing a cap.

To you loyal readers, thank you for an entire year of support. I am shocked that anyone ever took time out of their busy lives to read this jibber jabber, and to send me supportive comments, e-mails, cards, etc. My next post will be pictures of my healing wall - it is the last thing see before I go to sleep, and the first thing that I see when I awake. All of you have made a big difference in my recovery and my life.

Happy Anniversary!
Cheers!

Whacky thoughts for the day...
#1 When my hair starting growing and it was just a tiny stubble, I had a 1 inch/2.8cm hair growing under my chin! At least I kept the big bad wolf away with it.

#2 Have you ever noticed that people with a very wrinkly faces have not a single wrinkle on their noses?

The Lottery...

The change of winning the lottery is slim. If you don't play the lottery, like me, the chances are even slimmer. I probably should stop prefacing my grand statements, "When I win the lottery..."

Today I finally removed the bandage from having my port a cath removed 13 days ago. When I had it inserted in July and then removed earlier this month, I went to Beverly Hospital and was assigned whatever doctor was working that day to perform the day surgery. With 20/20 hindsight, I feel like I was playing the lottery with the doctors. How was I to know that I would get a highly skilled doctor, or a doctor that might not be on the top of his game? Why did I not research this better and request a certain doctor to do the procedures? I don't play the lottery with my finances, why did I play the lottery with my health?

A few unnerving instances happened during the removal that makes me believe this doctor was not necessarily the top in his field. I mentioned the nick on the artery in a previous post. One reason why I had so much time to look around the operating room prior to the procedure is that the doctor forgot to put on his glasses before he robed up for the procedure, so he had to re-robe. (Why do the doctors get to wear a robe and the patients wear a "johnny?") I can understand forgetting your cell phone or pager, but forgetting your glasses to do intricate work is a problem. The other strange situation was that the doctor did not have an assistant with him during the procedure. It was just he and me in the room. I kept thinking, what if something goes wrong and he needs help? When he needed an electric cauterizer, he yelled into the other room for some assistance. After the nurse brought the cauterizer, he left again. I have had countless procedures, and there were always at least two people in the room when anything was puncturing through the skin. The last odd circumstance was when he put on the bandage over the stitches and incision. He told me to cover it with cellophane wrap when I shower because it was not waterproof. What? Every other doctor, and there were plenty of them, used waterproof bandages. Were they out? Did he not know about them? Now I have gauze stuck to the site.

The scar from the removal looks a little big. I can't completely see it through the gauze that is clinging to the incision site. So far, my scar count from last year is 9. I would have more but a couple of them were cut off and discarded. I know, gross.

Whacky thought for the day...
Fresh snow is the most beautiful and serene sight, but the same snow, a day later, next to the side of the road, is the complete antithesis.

Hat Hair...

The worst part about skiing in cold weather is hat hair. Whenever I wore ski hats in the past, I begrudgingly was making a day long commitment. I could not remove my hat until I was stepping into the shower. If I should dare to remove the hat and expose my hair, I would make Phyllis Diller look like she had the most perfectly quaffed hair in America. The only way I could handle hats was when I was young enough to wear two french braids...those days are long gone. (Now people get helmet hair and forehead while skiing, but I haven't succumb to wearing a helmet. I'm still old school.) But with very short chemo hair, hat hair is not a problem. Bed head isn't even a problem.

Yesterday after shoveling tons of snow, I went inside to warm my bones and removed my hat to discover hat hair! My hair is now long enough for hat hair! Well, hat hair might be a bit of an exaggeration, but I did have a few independent hairs standing awkwardly proud. My hair is a whopping 1.25 inches/3.2cm long. Yes, we measured it. The color is still salt and pepper - very salty in the front, more peppery on top.

The ultra short hair has garnered various reactions. The other day, while shopping in the grocery store, the gay Frito Lay woman stocking the shelves gave me a double take and started a conversation. I was flattered, said hello, exchanged some pleasantries and then moved on. However, if it was a good looking straight guy, I might have stopped and pondered over which chips to buy before grabbing a couple of bags... unfortunately, those days are long gone for me...not the chips, but the cute straight guy giving me attention. But, I can still dream.

It is crazy how many people like my very short hair. I am not certain it is the best look for me, especially the color, but the convenience is great. After a shower, I towel dry my hair and arrange it with my fingers. I don't even need a comb or brush. I tried brushing it the other day, and laughed out loud at myself. I think my hair was laughing at the brush too.

Whacky thought for the day...
Do you feel a bigger sense of relief and accomplishment after you finish decorating the Christmas tree and the house for the holidays, or, after the tree is down and all the ornaments and decorations are put away?

Whacky thought for the day #2...
Why do the gas companies charge 9/10 of a cent? Who are they fooling? $3.03 9/10 is the same as $3.04! Have you noticed that it takes longer to fill the tank as gasoline prices rise? The gas pump can only go as fast as the dollars and cents can turn. Now the gallons on the pump read to 1/1000 of a gallon! I purchase 16.728 gallons of gasoline the other day at $3.01 9/10 a gallon. That is a lot of fractions and decimal points. Can you imagine the gasoline attendant doing the math for the bill if it wasn't tallied for him?!

Cupcake...

Having the port removed today was much easier than when it was stuffed into my upper right chest. However, it was not quite a cake walk; more like a cupcake walk.

I thought I could remember where the day surgery was located so I wondered around the first floor of the hospital for five minutes. When I inquired at the front desk, they informed me that I was to check in with them first. Oops. After I was properly registered, I was sent to the cardiovascular day surgery area. As I walked up to the area, it all began to look familiar. I was the only patient in the "CVS" - which I think stands for cardiovascular surgery. There were eight people standing around the centralized desk, wearing the same blue-colored scrubs, and looking relieved that someone showed up to their party. When I walked in I said, "No one told me that I was supposed to wear blue!" Can you believe that I got only one slight chuckle out of this Monday morning crew? About fifteen beds lined up in a semi-circle around the desk area. In July, when I had the port inserted, every single bed was full. Today, I was the Lone Ranger.

After I once again changed into a johnny/hospital gown, they drew blood to check how well my blood clots. (I wonder how many times I have changed into a johnny since this cancer trip began...triple digits?) Once the blood work results were in, I was rolled into the operating room. The two nurses rolling my bed were discussing which room to put me in for the procedure, when the guy said, "I like this room because it's nice and big and clean." I immediately thought, "Aren't all the operating rooms clean?"

As I was waiting for the doctor to come in, I scanned the clean, white room to check out all the equipment, supplies, etc. The wood cabinetry with glass fronts store the supplies. These cabinets gave the room a nice warm touch compared to the cold metal cabinets that they probably replaced. I saw the usual boxes for disposal of contaminated material or sharps - needles, etc. I also saw a box labeled "reusable sharps." What?! I am a big proponent of recycling, but what exactly is reusing sharps? I can't wait to ask Nurse O. Canada about the reusable sharps box.

Instead of getting full-on anesthesia similar to when I had the port inserted, I was given shots of Novocaine to numb the area above and around the port. (It was nice to get Novocaine and not have drooling as a consequence. ) The doctor instructed me to tell him if I feel any sharp jabs. Right away I felt a sharp jab, and then it got worse...I felt him cutting me! I said, "I can feel the sharp point. Ouch! Ouch!" After more Novocaine, the cutting feeling went away, but I could still feel a sharp jab every now and then. I didn't complain. I just wanted it over and done. Unfortunately, he nicked a small artery at the beginning of the procedure and had to cauterize the artery. It is a strange feeling to be lying on a table, seeing smoke, smelling something burning, and knowing that the burning smell is you. After the burning was over, he continued on to remove the port. He was having a tough time getting it out, and explained, "Removing a port is like having a baby, it must be positioned just right." (He clearly never worked in ob-gyn.) He was having a tough time getting it out and said, "This is a stubborn one." I am guessing the conversation in his head was a little different than "This is a stubborn one." He said that he must have missed some scar tissue that was holding on to the port. After a little more work, out it came. I could sense a relief in his voice. He asked me if I wanted to see port. It looked exactly like a miniature computer mouse, about the size of a thumbnail, with a tube attached to it. I was surprised by the length and circumference of the tube that ran from the port up to my carotid artery. The size of the tube explains why I could feel it through my skin.

Once the procedure was complete, they wheeled me back to my spot where I changed my clothes behind a drawn, semi-circle curtain, and then I strolled out of there. Quick and easy. I checked in at 8:10 a.m. and was in the car driving home at 9:30 a.m. No, I didn't drive; Chubba drove me to and from the hospital.

I was amused by how many times someone said to me, "You must be relieved to have this out." or "What a relief for you to have this removed." of "This is a great day for you." etc. It is nice to have it out, but I didn't think of the removal as any big deal. This was just a mini cupcake compared to last day of chemotherapy or last day radiation.

My next appointment is on February 14 with my oncologist. Unless...I go see my radiation oncologist, Dr. Dad because I missed two appointments in December. One was the original appointment, and the second was a reschedule for the first appointment that I missed. The appointments were written on the refrigerator calendar, and they called the day before to remind me, but somehow the appointments fell into one of my memory's dark holes. Next week I go in to Boston of have my arms measured as part of study I volunteered to be a part of for research. I hope I remember.

Whacky thought for the day...
What do you remember most fondly about elementary school - the parties or the academics? I loved the cake walks at my elementary school's fairs, plus all the school parties. Now, the local elementary school does not allow any treats brought to school for any occasion. No parties. No fun.

Memories...

Looking back on last year, my memory is like Swiss cheese, full of holes. Some holes are deeper than others. Over Christmas holiday my mom saw my neighbor walking his dog, and said how nice it was of him to come see me when I got home from the hospital after surgery. I have absolutely no recollection of him coming by, or me having a conversation with him. I was also reminded of Wild Kingdom and her daughter stopping by shortly after returning from surgery, and I flashed them all my scars. Yikes! I do not remember them coming by at all, and certainly I do not remember flashing them all my surgery sites. I do not even have the slightest recollection of these two visits. All I can remember after my surgery is the cast of characters I had as roommates, the drains, logging all my medications, and spending a lot of time in bed...I think.

I am glad that I wrote down the events of last year, because there is no way I could remember all the tests, procedures and decors. Tomorrow I am having another day surgery to have my port a cath removed. I cannot remember if I had local anesthesia or if I was put out completely. I am fairly certain that I was put out completely because I vaguely remember waking up. I do remember the doctor pushing down hard by my collar bone while inserting the port a cath...kind of like stuffing a turkey. If I remember him stuffing me with the port a cath, then maybe I wasn't completely out. However, I do clearly remember getting very ill from the anesthesia. My oncologist sent me an e-mail with the name of the anesthesia, Versed and Fentanyl. I am going to bring in a copy of the e-mail and ask if I could receive a different type of anesthesia that might not make me so sick.

After the port is removed I will no longer be able to show it off and gross out friends and family. It is visible under the skin as a big bump with some texture. I always ask the viewer if he/she would like to feel it. Most people touch it and then squirm. It has been kind of fun being a freak show.

When your mind if foggy during or after chemotherapy it is called "chemo brain." My chemotherapy stopped in August, but I still feel like I am in a fog. Often I have a difficult time saying a name or word that I know very well. I can see it -I know it - but I can't immediately retrieve it. I have difficulties finishing a sentence because a word fell into a hole. I forget what I was doing or why I walked into a room. You are probably saying, "I do the same thing." Before cancer I did all these goofy things, but now I experience them much too often. I get very frustrated and sometimes a little frightened. I think my brain has a chronic case of hiccups.

Whacky thought for the day...
If you can't remember what you can't remember, how do you know you can't remember?

Happy New Year!

Thoughts...

For ten months my mind was a dust storm generated by thoughts of diagnosis, searching for the right care, surgeries, recovery, treatments, side effects, and worries about my family. The dust is beginning to settle, giving making way for my mind to wonder... Surprising to me, I think about cancer several times a day. Every now and then I get a twinge of fright with a "what if" thought for the future. Previously, I was focused on ridding cancer from my body, but not necessarily on the cancer. I get angry with myself for having these dumb, unproductive thoughts. Several doctors warned me that I might experience this type of thinking.

Last night I met a beautiful woman in her 80's that had breast cancer and treatments in 1968-42 years ago! Her demeanor sparkled! She said that she saw me in church and wondered how I was doing. I asked about her treatments, and when she told me about her chemotherapy, it sounded like a very rough road. Chemotherapy must be very different today than it was 42 years ago. Talking with this lovely lady gave me a reprieve from my unnecessary thoughts.

I am looking forward to a happy and healthy 2011. (I like odd numbers.) It begins with a day surgery on January 3rd to have my port removed, and then it will be smooth sailing!

May the miracles of the season be with you throughout the New Year.

Merry Christmas! Happy Hanukkah! Happy Kwanzaa!

Torn Cape...

Because my cancer treatments have gone relatively well, I walked into the MGH North Cancer Center last Friday for my Zometa treatment, via and i.v. through my port, with my chin up, a little pep in my step, and with pink b.c. cape flowing. After all, attitude is everything.

Last Friday I ironed my cape, and went back to the Fusion Center in the MGH Cancer Center for and i.v. of Zometa, a bone strengthening drug. The i.v. drip lasted only about 20 minutes. I figured that since this is not chemotherapy, it will be an easy treatment. After the i.v. I felt fine, so the girls and I went downtown to participate in an local shopping event. (Any event that includes shopping has Riley's name all over it. Plus, it was tons of fun!) We went to dinner after the shopping, and all was hunky dory. Then... about 10 p.m. it hit, the side affects of the Zometa that I disregarded as something that happens to other cancer patients, but not me. After all, I soared through chemotherapy, pink cape and all. The side affects of Zometa are bone aches and flu-like symptoms. This is the same list of side affects from the Nulasta shot I received after chemotherapy, and one that a couple of Tylenol eliminated. As I was starting to ache, I took Tylenol again. And, then about 3:30 in the morning, the side affects hit me with a vengeance. My body ached as it I was hit by a Mack truck. Every single bone hurt 100 times worse than any flu-like symptom . My ankle bones hurt so much that when I tried to walk I was afraid I was going to fall over. There was not a bone in my body spared. On top of the aches, I could not stop vomiting. My trusted and reliable friend, Compazine, wasn't even working. After telephoning the on-call oncologist, I finally was prescribed something to keep me from puking. During the time I was throwing-up, I kept telling myself that this is what chemotherapy was supposed to be like. But the bone aches, oh the bone aches, they are still with me 60 hours later, but less intense.

I have five more treatments to Zometa. I will receive the Zometa every six months for three years. Ugh. Well, I guess this is one way to get rid of the Thanksgiving extra poundage. I think I'll leave the cape at home next treatment.

Speaking of b.c. We bought tickets to go to the BC Chorale on Saturday night (that's Boston College for you west coasters. )Needless to say, we did not make it. I tried to send Riley with some friends, but she is afraid to be out of my sight when I am sick. I think she is afraid that something grave will happen to me when she is gone. We saw the Chorale perform last spring, and they were fabulous! If you ever have the opportunity to see them perform, take advantage and go!

Yesterday morning Riley got a call from a friend who heard I was sick and wanted to see how I was doing. She also wanted to let Riley know that if there was anything she or her family could do, like give her a ride, that they were there for us. We don't even live in the same town. How unbelievably sweet! This is proof that teenage girls can be thoughtful. I want to make her the poster girl for teenagers everywhere.

Whacky thought for the day...
What is worse, saltine cracker crumbs or sand in your bed?


Happy Birthday Katherine!
Happy Birthday Melinda!

(That's it for the family birthdays.)

Zaps...

One strange aftereffect of radiation is that periodically I feel a little zap in the area that was radiated. The zap must be a very slow reacting cell just getting around to realizing that it was radiated. This zap feels like a very sharp needle poking from the inside. This is what a shock collar must feel like, or a shock bra.

Riley is continually dealing with zaps too. I am appalled and disgusted with some of her "friends." Just yesterday, Riley was talking with one of her "friends" about how sad she feels for a classmate who has a seriously ill parent, and that she can relate to some of her feelings. This "friend's'" sharp response back was, "At least your mom's cancer wasn't as bad" as this other person's illness. What the #@!%! I didn't know about the rating scale for life-threatening illnesses. She went on to inform Riley that "Everyone is getting tired of you dealing with your mom's cancer." If this girl's statement is true, then it explains a couple of things: 1. Teenage girls can be the most heartless, cruel, self-centered and insensitive human beings. 2. When Roo has a bad day at school, it really is a bad day. Wouldn't it be funny if every time girls say something mean that they would automatically get zapped by their bras? I envision high schools all across America with girls jumping in the halls.

If her group of "friends" are tired of watching Roo deal with my cancer, wouldn't they think that she might be tired of living with it? During these past 9 months of hell, it would have been nice if one of her peers took the time to ask her how she was doing? Have we forgotten to teach our children about compassion? Or, are they totally tuned out to their parents? Do they not pay attention during whatever Sunday service, youth group, CCD, etc they attend? I no longer give teenagers a break by saying they wouldn't notice a friend in need because they are so out of it; these same girls can replay every single detail of the last Glee episode - who was mean to whom, who's feelings were hurt, who needed a hug, etc. Oops...sorry, speaking of Sunday service, I just got a little preachy.

Unless you have walked in Riley and Molly's shoes, no one can even begin to know what they have endured this year. I cannot imagine what it would feel like to wonder, as a young girl, if your mom is going to die, and when. Is she going to be there for my graduation? Is she going to be there for my birthday? Is she going to be there for Christmas? Is she going to be there when I get married? Who is going to take care of Dad, my sister and me?

Today I started crying over something inconsequential. Just seeing my tears freaks out the girls, especially Riley. Unfortunately, but not surprisingly, they read more into the tears than actually exists. Riley often thinks I am hiding something from her regarding my cancer. The tears reinforces these thoughts. The girls and I were talking a few days ago, and one of them said, "I cannot go through another year like this." Because I was so "out of it" much of the year, I asked them how hard was this year for them. They both responded that it was an "impossible" year. For some strange reason, everyone forgets about the children of the person with cancer. They become the shadow behind the cancer patient. Early in this cancer dance, when asked what can be done for me, I often said, "forget about me, it's the girls that will need the most help." This is one of the few times when my hindsight mirrored my foresight.

I keep beating myself up about the tears or bad moments. I feel that I need to hold myself together better. Fortunately, I have my mom and Chubba to remind me that I have had a very tough year. Still, I need more laughs and less tears. After all...laughter is the best medicine!

Whacky thought for the day...
Why is it that people who speak the world "like" every fourth word can text or facebook without writing the word "like" over and over? Isn't is strange that facebook has become both a noun and a verb?

Haircut...

My hair is growing in baby-soft. It is surprisingly dark, except the aging highlights around the front and sideburns. The dark color is about the same color as my mom and sister's hair before they began to show aging highlights, and then discovered color in a bottle. Growing up, my hair color was very similar to Riley's hair, but with a touch more red. It is so short that it can only be measured in millimeters. My scalp is still quite visible. My friend and hairstylist, Clean Machine, called to see if I am ready to color my gray. She knows me so well. Sadly, is is too short to color. If she colored it now, my scalp would also become colored, making me look like a Jersey cow, or maybe a giraffe. Giraffe sounds better.

A couple of days ago, a woman came up to me in a store and told me that she liked my haircut. I chuckled and responded that this was a "cancer cut; courtesy of chemotherapy." She said, "I just saw another woman with the same hair style, and she explained that her boyfriend cut is with shears." She went on to tell me how great my hair looks, and that I should keep it short. Thank you very much! And then, she asked me if I wore a wig, and I said no. She continued to tell me all about her friend that went through chemotherapy and did not wear a wig, but only hats and scarves. I was never uncomfortable with her questions or rambling on, and she didn't even flinch when I said it was a "cancer cut." It was all quite comical. My guess is that this woman was not a native New Englander...not that there is anything wrong with it!

Last week I had my first mammogram since the surgery. A mammogram goes by quickly when they only take pictures of one breast - the old, non-reconstructed one. The most interesting part of this appointment was the conversation in the second waiting room. (When you go for a mammogram, you check in at the desk as usual for any other doctor's appointment. A nurse calls you in to a mini-locker room to change into a pink "johnny", aka hospital gown, and then you sit and wait in the second, mini-waiting room that holds about 10 chairs.) A woman without a pink gown was waiting in the room while her 92 year old mother ,who was recently diagnosed with breast cancer, was having an ultrasound. She had just seen Dr. T. Best, my surgeon, the day before. She said that her 92 old mother is not going to endure surgery, chemotherapy, nor radiation; she is only going to take oral medicine. Even though her mom looked strong, sharp and stylish, I think that at 92, surgery and treatments would kill her before the cancer. Prayer out to this strong old gal! We were sharing our great experiences with Dr. T. Best, and how we felt we were in the best hands in the business, when a woman at the other end of the room moved closer to us and said, "I think I need to hear this conversation." She was recently told that she has something suspicious that could be breast cancer. She had that glazed look in her eye, the one that I still remember...it's the what in the world do I do next look. She wrote down Dr. T. Best's name. Hopefully she won't need her. Without effort or intention, I somehow managed to make this scared woman laugh, which she unnecessarily thanked me for when she was leaving. Prayer out to this scared woman too. ("Prayer out" is a prayerful shout out. Yep, I just made that up.)

Whacky thought for the day...
This is the only time in my life, other than at birth, when my dad, and my brothers too, have more hair on their heads than me!

Happy Thanksgiving!

Nov 24 - Happy Birthday Brittany!

5 Greats...

A little over a week ago I had a post-radiation appointment with my radiation oncologist, Dr. Dad. He took one look at my exposed left chest and underarm and exclaimed, "Great!" pause. "Great, great, great great!" I asked him, "Is that 4 greats or 5 greats?" He responded, "5 greats!" ( I actually feel like 2 okays and 1 good.) He said that my skin is healing beautifully, but that I still had some burning to go. When people ask me how I am feeling, I tell them that "I am smoldering." You know, like how a forest fire smolders for days after it is extinguished. Dr. Dad also told me that if I went swimming in warm ocean water, my skin and scars would heal in two days! I asked if he could write a prescription for this treatment, but he didn't think insurance would cover a trip to a tropical island. If I was a member of congress, I bet I could get an insurance company to pay for this trip!

After the comment about continuous burning, I asked several questions. You may wonder why I didn't ask them earlier. Well, as we all know, hindsight is much more clear than foresight.

1. "Why did you use the bolus during my treatments?" When someone is having a radiation treatment, the radiation kicks in just below the surface of the skin. In my case, the bolus tricked the radiation so that the maximum strength started right at the skin and radiated at max strength all the way to the chest wall. Because I have so much scar tissue on my left breast (Riley said that is looks like the Oakley logo with a tail that extends to my armpit,) he wanted to make sure that the skin gets maximum radiation. As scar tissue heals, the scar area is like fertile soil, both good and bad things grow well, plants and weeds, skin tissue and microscopic cancer cells. He wanted to kill any tiny cancer cells that might be hiding and germinating in the scar tissue. This explains the ugly dead skin that looks like all colors of Playdough mixed together. As of today, I still have some of this nondescript gray skin along the scar line of the oval Oakley O. By the end of this week, the dead skin should be all gone. It has been over two weeks since my last radiation treatment, and the skin is just finishing its long, slow death.

2. "Why does the burning continue weeks after treatment?" (I somewhat knew the answer because just the night before, Riley and I read something about this in her biology text.) It takes many days for the cells to complete their reaction to the radiation. Via a 10th grade biology text, I was reminded that some chemical reactions are instantaneous, and some are very slow. Radiation happens to fall in the slow category. I know, common sense.

3. "Three times during radiation, the tech forgot to tell me to breathe in before she turned on the machine. Should I be worried?" I was concerned about my lungs, but Dr. Dad set me straight by explaining that the large inhale was to protect my heart. Because I was radiated on the left chest area, there is a very slight chance that the heart could be affected by radiation. (All this time, I thought the big inhale was to protect my lungs.) By taking a deep breath, the lungs slightly push the heart out of the radiation path, giving it a little extra protection. He told me not to worry, because in the past, they did not do the breathing to protect the lungs. What?! That's like saying, in the past we didn't have such thorough sterilization procedures for our instruments, so don't worry if the scalpel fell on the floor; I wiped it off on my pants. Anyway, I am not at all worried. I was just surprised by Dr. Dad's uncharacteristically lame statement. I still think he's great. Great, great, great, great. 5 greats!

A few days after seeing my radiation oncologist, I saw my medical oncologist, Dr. Banana Split. I was thinking of calling her Dr. B.S. for short, but it just doesn't fit. We talked about the medications I will be taking for the next five years. For the next 2-3 years, I am taking Tamoxifen. Tamoxifen blocks estrogen that can feed new cancer cells. I take one pill every day. I am so bad at remembering if I took a pill, that I bought a 7 days of the week pill box. Oh my God, am I getting old! My grandmother didn't need one of these pill organizers until she was in her 90's! After the Tamoxifen, I will take something similar for the remainder of the five years. I am also receiving an i.v. of Zometa every 6 months for three years, which sends me back to the infusion clinic - the place where I received my chemotherapy treatments. It will be given to me through my port. Zometa is a bone strengthening drug that is widely used to treat osteoporosis. Dr. Banana Split said that the Tamoxifen can sometimes weaken bones, and that if cancer comes back, it is often in the bones. Strong, healthy bone cells don't allow the nasty cancer cells to move in like unwanted guests, spreading their crap everywhere.

I was scheduled for day surgery last Friday to have my port removed. I was not looking forward to this procedure because I got so sick from the anesthesia when it was put in. Coincidentally, earlier in the week, when I went to have blood drawn, the lab tech had a difficult time finding a good vein. (They do not take blood through a port.) She could not find a vein in the usual place, inside the elbow, so she went for a vein in the middle of my forearm. She kept moving the needle around as she was removing blood to fill three vials. She gave up on this vein half way through the second vial, and went to a vein in my hand to fill the second and third vials. (She threw away the half filled second vial from vein #1.) It didn't feel so great, and I don't recommend getting blood drawn this way. I ended up with a couple of first-rate bruises on my arm. As a result of this lovely episode in the lab, I received a call Thursday late afternoon from MGH, cancelling my day surgery to have my port removed. I have always had difficulties with i.v.'s and veins. When I was in labor with Riley, it took 2 nurses and an I.V. specialist to insert the needle...another reason I could never be a heroin addict.

Today I received a call from Shirley, Laverne's partner, and the case worker in charge of the study I volunteered to be a part of way back before chemotherapy. Shirley often calls me to follow up on "stuff" for Dr. Banana Split. She is the one that called me last Thursday to inform me that my day surgery was cancelled. Today she informed me that my blood work showed a vitamin D deficiency, and that a prescription was called in for a pill with 50,000 units of vitamin D! I am taking this pill once a week - another pill for my box. Ladies, look up vitamin D. It does all kinds of great things for us; it maintains calcium level for our bones, it can help keep bad cells like breast cancer cells from multiplying, it boosts immunity, and it can decrease the risk of high blood pressure. Since vitamin D also comes from the sun. That trip to a warm tropical island is sounding more and more beneficial!

Whacky thought for the day...
"If more than one goose is geese, why isn't more than one moose, meese?" - Mia Cromwell, age 8

Nov 22nd - Happy Birthday Nora!

Delayed Reaction...

One strange aspect of radiation is that the side affects do not show up until several days after radiation. It is kind of like eating an entire bag of cookies, but the pounds don't show up on the scale until a few days later.

When I had radiation, I had a bolus put on top of the radiated area. A bolus is a sheer, urethane-colored, rubbery material that is placed on the skin to "fool" the radiation so that it deposits the maximum does of radiation on the skin, instead of a just below the skin - which it would do without the bolus. The bolus used on me was about 12 inches square and about 1/4 inch thick. It is so pliable that it molds to your skin, but had to be taped to me so that it would not fall off during the radiating. (Who invents this stuff?!) I talked to three other women in the waiting room, and none of them used a bolus - lucky ducks. I think the bolus is why my skin became so red and irritated. I am guessing that Dr. Dad used a bolus because I had the tram flap reconstruction. I never asked him the reason for the bolus because I thought it was standard, but now I am curious. I am going to ask him on Wednesday what the benefit of the bolus was for my treatment.

Two weeks ago, the week before my last week, my radiation treatment was changed a bit. I had only one zap that didn't require me holding my breath. It was a 30 second does in a small area - the center of the reconstruction. They used a small bolus for this radiation treatment that didn't require tape. This was a nice break in my treatment because it gave relief to the armpit and other burnt skin, plus I was in and out of treatment in a flash. However, this weekend the burn just began to show in this center area - 7 days after the last treatment! Dr. Dad warned that the side affects had a delayed reaction and wouldn't show up until two weeks after radiation began, and last two weeks after it was over.

The fingers in my left hand are numb from the radiation affecting a nerve in my back. It will eventually go away. The burning in the usual places flared up again, but not as bad as when the skin was dying.

So, when I thought I was out of the woods with my last treatment, I was just seeing a little clearing in the near the edge of the tree line. It's kind of like hiking out from a backpack trip - you're hot, dirty and tired, and you think you made your last descent, just to realize you have one more crest to make before you descend to the car at the trail head.

Whacky thought for the day...
Wouldn't it be great if we could take off pounds as fast as we put them on?

Yesterday - November 7 - Happy Birthday Smurf! (my dad) 77 on the 7th! In Las Vegas, if you get three 7's on the slot machine, you are a big winner. And, if you get three 7's in blackjack, you win the hand. This should be a lucky year for Smurf!

November 5 - Happy Birthday Tammy!

Yippee!!!

Yesterday was my last radiation treatment! I celebrated the occasion by wearing a tiara to radiation. It was a big, silver, plastic tiara with three large, pink heart-shaped rhinestones and several clear rhinestones. With a big crown resting on my semi-bald head, I was quite a sight! The tech ladies got a good laugh on my behalf. My response to them was, "What, has no one ever worn a tiara to radiation before?" Earlier in the week I sarcastically asked if I would receive a diploma at the end of treatment. They told me that in the past they handed out diplomas and sometimes play "Pomp and Circumstance." However, some people did not like the graduation-themed treatment, so they had to stop this practice. Since there was no graduation, I thought a coronation was the next best thing.

Even though I will no longer be zapped with radiation, my skin will continue to burn, itch, blister and peal for about two weeks. I see Dr. Dad next Wednesday, and he will give me the rundown on the skin issues. Two days this week the tech gals forgot to tell me to "breathe in" before they turned on the radiation for the first of ten zaps. Somehow the big inhale protects my lungs from radiation. Over the past 7 weeks, I had only three incidences, with three different techs, when they forgot to tell me to "breathe in" on the first zap. On one occasion, the tech came right in to me before the second zap and apologized and then went directly to Dr. Dad. She came back to tell me that Dr. Dad said not to worry. I am not worried, but I am curious to hear what Dr. Dad says when I ask him about my left lung and the radiation. Maybe he can also tell me why my body aches all over every evening, as if I am getting the flu. This is a new side affect that goes away after a couple of Advil and a night of sleep.

It will be strange on Monday when I don't have to race to treatment after dropping off Molly at school. It was like having coffee with some friends on a daily basis, except, there was no coffee, and I was lying partly naked on a table, getting zapped with radiation. These ladies helped me through a tough time - watching the Giants get through the playoffs and win the World Series!

One of the tech gals asked me who did my surgery because she said that she said that it looked really good. The scars are slowly fading. I figured that she has seen a lot of reconstruction, and that she was a good judge of surgeries. Hats off to Dr. Chief.

Speaking of hats off...I am getting a little weary of wearing hats all the time. I think I am a couple of weeks away from not needing hats or scarfs when I go out, except that it's getting cold and I need to wear a hat for warmth. BC (before cancer) my hair grew fairly quickly.

This little train is back on track and coasting all the way to the station.

Made!

Whacky thought for the day...
45 degrees feels very cold these days. Come January and February, 45 degrees will feel like a heatwave.

Train Wreck...

Last February 12 when I was told that I had something suspicious that could be cancer, I told myself, "No big deal I will get through this." I was like "The Little Engine That Could." Over these past many months I kept telling myself, "I think I can. I think I can. I know I can. I know I can." I thought that chemotherapy was the top of the mountain for this little train. When I reached the top without too much fuss, I coasted down to radiation. What I didn't realize, was that at Radiation Valley I could derail, which is exactly what happened.

The last two weeks I was a complete train wreck. I had so much discomfort and pain from burnt skin, that all I wanted to do was get through the day without tears. Having any type of fabric touch my skin was unbearable. I tried several types of radiation cream, but discovered that Mother Nature provided the best comfort - pure aloe - without any dye or perfume. This worked for a while until my burned skin began to turn a strange color and became even more painful. At this point Dr. Dad prescribed a cream that helped somewhat when I put a telfa pad (non stick gauze pad - similar to the middle pad of a band-aid) between the burnt skin and my clothing. This new color looked like the results of children mixing all their paint colors together - a grayish green color. I guess this is the color of dead flesh, and what a real zombie looks like. I had this zombie skin under my arm, a patch on my chest, and the bottom front of my bra line. These three areas were the most sensitive and caused the most discomfort. I slept with a pillow under my left arm to keep my armpit open. I couldn't wait until the end of the day when I could remove my bra. I put this prescription cream on twice a day, and was grossed out every time I had to apply it to the zombie areas, especially the armpit. It was disgusting looking. I am happy to report that as of Sunday night, during my regular cream application before bed, the pain subsided, and most of the zombie skin had fallen off. Are you grossed out yet? Should I have written this a couple of days earlier - on Halloween?

On top of my pain, I also had a couple of meltdowns over the past few weeks. I felt bad for everyone in this house, even the cats, because I was a wreck. It is not fair for me to take my discomfort out on others. When I crashed, I crashed hard. I guess this train was travelling faster than I realized.

Over the past 3-4 weeks Riley told me several times that she is worried about me dying. She hasn't said this to me since last February. She said that she doesn't believe me when I tell her that I am okay because she has seen me with so much discomfort. This worry is compounded by the fact that she doesn't have a good friend to talk to about her feelings. A girl that she thought was her closest friend turned on her recently, and in a hard way. (Not like there is an easy way for your best friend to turn on you.) She talked to a guidance counselor, but it didn't seem to help. She really wants a peer who understands what it is like to have a sick parent. I e-mailed her guidance counselor to ask if there are any other students at school that have walked this rocky road, but she didn't know anyone. Then...at the same time, one of the counselors and I realized that she has a soccer teammate, in the same grade, who's mom went through this four years ago! I even talked to her mom many times at games about the trials and tribulations of breast cancer, and we share the same radiation oncologist and medical oncologist. Why is it when something is so obvious, and right in your face, that you don't see it? Riley has talked to her recently, but she hasn't said if this is what she was looking for in a peer. She always has me, and fortunately, she is comfortable telling me all her feelings and worries. I just need to keep it together for her.

Molly is also having a difficult time with my cancer, but coming from a different angle. Last year she had support at school, and knew that if she was having a "tough" day, her teacher would support her, encourage her to take a break, and send her to the school nurse for a hug. Her teacher also treated her with "kids gloves" while instilling the normal parameters of the classroom. Molly does not have this same situation this year. She hates school and wants to stay with me. She was not late for school one single day last year because she was fanatical about getting to school on time. The past two days she didn't care if she was late or on time. One day last week, she would not go to school until after I got home from radiation. Last year she missed one spelling word the entire year, and you would have thought the world was coming to an end because of this one misspelled word. Now she could care less about her spelling tests. She does not care about school because she feels that they do not care about her. School is no longer a safety zone or a break from my cancer. Her nerves are raw, and school is constantly pushing on these nerves. She feels that she has no support at school. I am beyond words to desciribe my shock and anger at the insensitivty toward a 10 year old who wonders if her mom is going to live or die. The situation has become so bad that we are considering changing schools.

Both Riley and Molly have held it together so well, and for so long. It is natural for them to unravel at some point. We are at that point. Hugs seem to be the best remedy. If happen you see Riley or Molly, give them a hug.

All this pain, tears and meltdowns is the primary reason I have not written. I fear that I sound like a whiner. I was warned by my surgeon, oncologist and social workers that hitting a wall might happen.

One of my doctors, can't remember which one, told me that often cancer patients have a difficult time after they are finished with all their treatments and no longer see doctors on a regular basis. He/she said patients can feel uncomfortable "being on their own," and without the weekly or daily support of a medical professional. I don't see myself going through his doctor withdrawal. I will be thrilled when I don't have daily or weekly appointments where I have to undress and talk about cancer. However, I am wondering if the girls are scared that I won't have a doctor looking over me weekly or daily.

I finish my radiation in three days! - Hooray!!!
.............................
On a lighter note.....
And I mean lighter as in color - my hair is beginning to grow. My front and sideburns are looking very light, and I don't mean blonde. The majority of my hair is dark which makes the light hair look very light. Yikes! Gray is not my color.

All of a sudden my eyelashes are very short. I wonder if I never lost them because I held onto them with such conviction; and then when new eyelashes began to grow, they pushed out the old, long, dead eyelashes. It is difficult to apply mascara to little stubbles. I think I look tired without long eyelashes. Or, maybe I just look how I feel.

Whacky thought for the day...
The San Francisco Giants won the World Series!!!!!
I became a huge Giants fan when I was a road rep and regularly listened to the games on the radio. (I was listening to the 1989 World Series game on my way to Chico when the big earthquake hit, and the radio signal went silent.) At one time I could tell you who played what position, plus their back up. I even knew the batting line up and pitching rotation. I could recite a few batting averages, but was not big on stats. I know, sounds crazy.

October 27th - Happy Birthday Molly - 10 years old!

October 24th - Happy Anniversary Chubba - hard to believe that anyone could stay married to me for 23 years!