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!

The Color Purple...

If you have ever shopped for white paint, you know that there are a crazy amount of different white tones. They range from a neon/bluish white to a yellowish/khaki white. This range of whites represents my skin tone from spring all the way through summer. I don't tan, but I can turn a dark shade of white. Even when I taught windsurfing one entire summer, I did not tan.

If I don't use sunscreen, my skin would represent the pink tones. I am careful about not sunburning my skin because I want to look as good as my grandmothers did in their golden years. They never sunned their skin, and aged beautifully. In her 90's, my grandmother looked better than most face lifts. However, radiation has turned the skin on my left chest and underarm from white to light pink to bright fuchsia.

My newest color is the color purple. I didn't even know that one's skin could turn this color. On the color wheel, my purple skin is closer to red than blue. (blue + red = purple) My toasted skin often itches, and sometime aches. My skin also feels thick and tight, especially under my left arm which looks the most purple. I had to cancel my physical therapy because I couldn't bear someone pulling and stretching my colorful skin.

I look like a doll that was colored by a little girl who loves pink and purple.

Today Chubba drove me to radiation because I was very dizzy this morning. I saw Dr. Dad's nurse about the dizziness, and she told me that is could not be related to radiation, and that I could possibly have a virus. She checked all my vitals, and they were normal. Chubba saw the whole radiation routine. He thought the radiation machine looked like something from "Honey I Shrunk the Kids." There are three radiation rooms, and I am assigned to room #2. Sometimes I will have a new tech rotating in from another room. Today I had a new gal that made a couple of mistakes. Over an intercom, a tech instructs me "inhale" before they turn on each radiation zap, and "breathe" after it goes off. The new tech forgot to tell me to breathe after I had been holding my breath for 20 seconds. Fortunately I had danced these steps a few times, so I knew the routine and that it was okay to breathe. Her second mistake was more disconcerting. She forgot to tell me to "inhale" before she turned on the machine. I heard it go on and quickly inhaled, and moments later she said "inhale." I wanted to yell - "too late!" I hope this one zap of radiation wasn't enough to damage a lung. If she is there tomorrow, I am going to remind her to warn me to "inhale" before the radiation is turned on.

I have two more weeks of radiation. However, I have four weeks of side affects left. I will have a lot to be thankful for on Thanksgiving. Bring on the stuffing and the gravy! (Just don't tell my oncologist who keeps telling me to lose weight. She's right - I can read the scale too.)

This whole cancer - surgery/chemo/radiation thing is getting old and wearing on me. I have never run a marathon, but I imagine this is what the last few miles must feel like. I just need to suck it up and get over the dang finish line.

Whacky thought for the day...
Is "dark shade of white" an oxymoron?

Let It Grow, Let It Grow, Let It Grow...

Oh the weather outside if frightful,
And the fire is so delightful,
New stubble is beginning to show,
Let It Grow, Let It Grow, Let It Grow.

Last week I thought I saw hair growing on my legs so I shaved them for the first time in three months. I might have been premature because they are still as smooth as a baby's behind. However, my head is beginning to show signs of growth. The top of my head is starting to look a little darker, BUT the sides in the front are coming in light - yikes! I am going to look like a reverse skunk - dark in the middle and gray on the sides! I am one of those that doesn't believe in gray hair, but coloring is not an option when it first begins to grow back. There must be some natural, organic, gentle hair coloring that I can use.

I was so cold last night that I wore a ski hat and ski socks to bed. Yes, I was very attractive. I guess if you bald gradually, getting cold at night from the absence of hair is not an issue. In middle of the night, my internal heating mechanism kicked in, aka hot flash, and suddenly the hat and socks sailed across the room.

My radiation rash itched so badly tonight that I thought I was going to lose my mind. It reminded me of the time my brother Roco, as a little boy, broke his leg, got a full leg cast, and then got chicken pox...talk about itching that you can't scratch! (No matter how bad I feel, I know someone has it worse, so I shouldn't whine.) I just kept putting more and more radiation cream on it, and finally it subsided. Are you starting to scratch as you read this? You know, like when someone starts yawning and you begin to yawn too.

Whacky thought for the day...
Why is yawning contagious?

A Walk In The Park...

Many people told me that radiation was going to be easier than chemotherapy. Several doctors, who clearly have not personally experienced radiation or chemotherapy, said that radiation was the "easy part." The only people who did not say that radiation was going to be easy were my radiation oncologist, Dr. Dad, and people who actually walked down the chemotherapy and radiation paths.

I just completed my fourth week of radiation, and it has been no walk in the park. I am battling exhaustion daily. My radiated skin feels tight, and being stretched out on the table/couch reinforces the tight feelings. The techs call the table "couch" when they are adjusting and spinning it to a specific angle to the machine. Believe me, I have napped on several couches, and this table is no couch. I have a rash that looks like an terrible heat rash on the left side of my chest, and behind my left shoulder. The reason I have a rash behind my left shoulder is that even though I am laying on my back, the radiation goes all the way through my body from front to back, affecting the skin on my back. Dr. Dad told me this might happen. The rash itches and I try to regularly put radiation cream on it to sooth the itching and burning. Where there is no rash, the skin if sunburned pink. I look like that person who feel asleep at the beach their side, getting sunburned on one side, and still white on the other. I have three more weeks of radiation fun.

Today I counted the duration of each radiation zap. The first zap lasts 16 seconds, requiring me to inhale and hold my breath for about 18 seconds. I think this long zap targets the chest area where my skin is red and bumpy. The next longest zap was 6 seconds. The rest of the zaps only last 1-3 seconds. I get zapped 10 times each visit.

I actually prefer chemotherapy over radiation. I know this sounds strange. At least with chemotherapy I could take a pill and get over whatever was ailing me. Plus, I was fortunate to have only four cycles of chemo that only took a few hours each treatment. Recently, a breast cancer survivor told me about her neighbor that is going through 17 hours of chemotherapy each cycle for a different kind of cancer. This makes my chemotherapy look like an easy stroll through the park.

Last week Molly went with me to radiation again because she was having asthma issues, and Chubba was on the road. This time she was allowed to stay in the control room and watch everything. She told the techs that I said that part of the machine looks like "noodles." I had to clarify that I said dried spaghetti pasta. They showed her all the parts of the machine, and she saw the spaghetti pasta-like teeth open and close to form different shapes. She said that this was a fun field trip.

Whacky thought for the day...
Hair is more than a head accessory, it provides warmth.
I didn't realize how cold I would feel being bald.

Sadism...

When I signed on for this cancer gig, I didn't realize that torture/physical therapy was part of the package. After surgery, I quickly learned why physical therapy is a necessary part of recovery. During a mastectomy, lymph node removal, and reconstruction a whole bevy of muscles are cut and compromised. In the beginning, it was difficult to do simple things like getting dressed or reaching for a glass in the cupboard. The more I used my arm, the more movement I gained. As they say, "Use it or lose it."

I just complete my first 3 weeks of physical therapy. I went twice a week. Today I graduated to once a week. During physical therapy the therapist stretched and manipulated my left arm in all directions. I didn't realize how many muscles run up and down my chest until these muscles screamed back at me. Several times I almost cried out "uncle" as the therapist stretched my chest, shoulder, and side (lats) muscles to their max. I think that physical therapists must have a slight sadistic side to them.

Whacky thought for the day...
I am thinking of dressing up as Uncle Fester for Halloween.
I have the right hair style, and before make-up to cover my dark circles under my eyes, I am a dead ringer for Uncle Fester. Is he from Addam's Family or The Munsters? We watched both when I was growing up, and I'm not sure which one I favored.

Field Trip...

Today I took the girls out of school so they could accompany me to radiation. Last week they asked if they could go with me one day to radiation, so I asked my radiation oncologist, Dr. Dad, if it was allowed, and he thought it was a good idea to take them on this field trip. Dr. Dad even came to the waiting room this morning to introduce himself and say hello to the girls. Dr. Dad is the perfect nickname for him.

When we arrived, I let Molly check me in by scanning my card. We had to sit in the waiting room an unusually long time. They were running behind by about 20 minutes, which is a first since I began treatment. The girls didn't mind waiting because it meant they were missing more school, and they got to watch tv - which is something they are not allowed to do during the school week. I know, I know...I am a mean, strict mom.

When we entered the radiation treatment room, Riley said that it just looked like a big x-ray machine. I pointed out the 12 inch thick door. They watched as the techs marked me with a felt-tip pen, and then lined the table and me up with green and red laser lights emanating from several places in the walls and ceiling. For some reason, the girls were not allowed to stay in the control room and watch on the monitor as I was getting zapped. I will ask Dr. Dad on Monday (I see him every Monday) why they are not allowed in the control room. Riley thought the reason that had to leave was just in case radiation leaked into the room. I think it's an insurance issue. I'll find out on Monday if either one of us was correct.

I am on week two of seven weeks of radiation. The skin under my left arm is beginning to feel a little sensitive, like a very mild burn. I wore a cotton sweater with a cami , and the thickness and texture of the sweater felt abrasive against my skin. I discovered that the most comfortable top to wear against my sensitive skin in one of Chubba's cotton t-shirts that has been washed 500 times. This look is okay for hanging around the house, but not so great in public...I would be a poster child for What Not to Wear.

I am not sure if my hair is beginning to grow. A few people that have seen me without a head covering said that it look likes it is beginning to grow, but I think they are just seeing the leftover stubble that never escaped. I use my legs as a hair-growing barometer, which I have not needed to shave in over two months, and nothing is growing yet. Not needing to shave my legs is a cancer bonus. My eyebrows and eyelashes thinned a bit, but I never lost them. The other day I was going to pluck a couple of stray eyebrows hairs, but I was afraid that if I plucked one hair, the rest would fall out - kind of like pulling a loose thread and then the entire seam unravels.

Whacky thought for the day...
Sweden must make the best military tanks.
Today Molly and I were on our way to an away high school soccer game, when the traffic on highway 128 stopped, somewhat abruptly. I was afraid that we were going to get hit from behind so I told Molly to "hold on." The guy behind was going to stop okay, but the lady behind him barrelled hard into him, and he smashed into me. Fortunately, no one was hurt. Molly was very scared and shaking. The other two cars, a Jeep Cherokee and Dodge Caravan, had to be towed away. The front bumper of the Jeep - the part that hit me - pushed up and into the engine, destroying the right headlight and socket, and doing something to the radiator causing fluid to leak all over the ground. The back of the Jeep was crushed all the way into the left rear wheel well. The front hood of the Dodge buckled, partially covering the windshield, and exposing a damaged engine leaking fluid. It was in very bad shape, and is probably totaled. I am surprised that the Dodge's airbags didn't deploy.
My Volvo wagon has two little scratches on the middle of the rear bumper! We didn't even get pushed forward upon impact!

The Real Deal...

Monday I had a practice radiation treatment. The set up and machinery is the same as a real radiation treatment, but instead of shooting radiation into me, they shot x-ray pictures of me. The x-rays were another way to verify that they marked the correct areas to target the radiation.

The radiation treatment room is similar to an x-ray room, except the radiation is much stronger than a normal x-ray. The door from the control room to the treatment room is about 12 inches thick. Three radiation techs watch me on a monitor from the control room; there is no window into the treatment room. I think there are at least four computer screens in the control room. The treatment room has the most interesting ceiling. Two rows of ceiling tiles - you know the ones you count while lying in a dentist's chair - look like they are made of rice paper with leaves fixed to the inside. The leaves look real. The colors are brownish and greenish. It is very pretty and zen-like. I have never seen anything like this, but I think medical offices should be required to install these ceiling tiles - especially dentists. (No, I don't have a problem going to the dentist. It just seems like time goes by so slowly in a dentist's chair.) The techs play good music too.

Yesterday and today were the real deal. The set up and positioning of me on the table takes longer than the actual radiation. Radiation set-up requires three technicians. Technicians stand on each side of me while I am on the table, lining me up with green laser lights that shoot down from a cross cut into a plain ceiling tile. The third technician stands at the foot of the bed, positioning it too, and reads off some numbers from a computer screen. Sometimes they move me the tiniest bit to line up the numbers - it is all about precision. My arms are stretched over my head in a somewhat uncomfortable position, stretching the limits of my physical therapy for my left arm. My head rests in a little cradle. During the radiation, I turn my head to the right, away from the radiation field. I get radiated eight times in different locations on my left chest and left underarm each visit. Each time I must hold my breath while the machine is doing its thing. They talk to me from the control room telling me when to hold my breath and when I can breathe. The breath holding has something to do with protecting my left lung from accidentally getting radiated. Normally, holding my breath isn't a big deal, but I still have this dumb cough! I am going on 6 weeks! Maybe if my lung was radiated, it would kill this cough. Other than a couple of coughs between radiation zaps, I have managed to make through okay.

The machine that administers the radiation is called a linear accelerator. (I thought that a linear accelerator was the mile long building at Stanford used to break up atoms.) First, the machine is positioned on my right side, and after a couple of zaps, the techs come in, reposition the table and me, and move the machine to the left side. The machine is a very large circular disc on the end of a long arched arm, with a small glass panel about the size of a sheet of paper in the middle of the disc. When it is on my right, I can look directly into the rectangular glass plate that has two rows of teeth on the inside, similar to the teeth on a comb, but the thickness of spaghetti pasta noodles. Each tooth moves independently, and the opening between the two rows of teeth changes shape, depending on the target for radiation. It's pretty interesting and entertaining. I make up different images for the shapes - kind of like imagining clouds are animals, flowers, a piece of apple pie, etc.

The entire process goes fairly quick. I am in and out of the building in 30 minutes or less. It is too soon for side effects, so I feel like I am just getting x-rays in a strange contorted position. Maybe I will have some interesting side effects to report in a couple of weeks. For now, the worst thing I am dealing with, besides this cough, is some burnt fingers. I spastically burned some fingers last Friday while taking something out of the oven. They are taking an unusually long time to heal. For some strange reason, my left pinkie go the worst of it, and it will spontaneously throb with pain - during the day or when I am sleeping at night. I am guessing that along with a weakened immune system, my self-healing from burns or wounds was compromised too. I have never had a burn act like this. During chemotherapy they warn you about being careful in the kitchen, but I think that was related to knives, not burns. I should have stayed in that burn-proof bubble.

Whacky thought for the day...
Most underarm deodorants have metal in them and interfere with radiation. Some believe that the metal in deodorants can be a contributing factor to breast cancer. The only deodorant that I know for certain that does not have metal as an ingredient is Tom's of Maine.

The Bubble...

After my first two chemotherapy cycles, I lived in a bubble to protect my weakened immune system from germs. I didn't go to a grocery store, movie theater, restaurant, pediatrician's office, Target, or any germ-ridden places. Because I stayed healthy for the first month of chemotherapy, I got a little lax and over-confident, and started venturing out. I still washed my hands constantly, and took a bath in hand sanitizer when I got in the car, but some tenacious germs popped my bubble.

I have been coughing for over a month, and it has progressively worsened. Ten days ago I went to see my nurse practitioner at my primary physician's office; she prescribed antibiotics. Under normal circumstances, she would prescribe prednisone, but prednisone weakens one's immune system, and mine is already compromised from chemotherapy. The antibiotic only slightly lessened the cough, but over the weekend, it flared up so badly, that I almost went to the hospital. I am a world-class cougher, with over 40 years of experience, but this cough, combined with asthma, even challenged my fortitude. I went back to see the nurse practitioner on Monday, and I am now taking prednisone. It has helped tremendously. (My last chemo cycle was three weeks ago.) I am still coughing, but at least now I can sleep for more than an hour at night. I might crawl back into my bubble for a couple of more weeks.

Whacky thought for the day...
Who doesn't love bubbles? There is nothing more innocent and sweet than a child blowing bubbles.

Whacky thought for the day #2...
Why do pediatricians have toys in their waiting room? Almost every single pediatrician's waiting room in America has a large bead and wire maze attached to a table for patients to play with while they are waiting. Sick children who put their fingers in their mouths and noses play with this toy! Sick children sneeze and cough on this toy! To make matters worse, when you go into the examining room, there is usually a box of germ infested toys and books tempting children! I am that germiphobe parent who brought her children to the pediatrician's office in a bubble, and wouldn't let them touch any of these germ-laden toys or books. I always brought our own toys and books that I sterilized when we returned home. Hello.......I don't want to make my healthy children sick or my sick children sicker! (Now we bring homework instead of toys to entertain the girls while waiting for the doctor.) I once thought that these toys were placed in the offices to guarantee repeat business, but soon discovered that pediatrician's offices are so busy, that getting a same-day appointment is like winning the lottery.

The Tattooed Lady...

Yesterday I had my own personal mapquest; I was "mapped" for radiation. The process was interesting and, of course, modesty crushing.

The first part of my appointment was called "teaching." My oncologist's nurse explained the procedure of radiation and the side effects. The teaching lasted a long thirty minutes. What I learned is not to be late for my appointment or the next person will be put in your slot, and that my radiated skin is going to get very red, and sensitive. She explained the different creams that may be applied to the skin to relieve some of the burning and itching. (I began applying Jean's Cream today.) It took thirty minutes for me to retain all this information that is written in a packet. After the teaching she walked me to the radiation area and showed me the changing room.

After I changed into the stylish, faded blue-patterned "robe", aka johnny, Dr. Dad met me in the CT Scan waiting room. He explained in greater detail the side effects of radiation. The radiated skin will get very red and possibly blistered like a very bad sunburn. The other major side effect is feeling tired. He said that the more I walk, the less tired I will feel. (So how do you walk if you are too tired, but you need to walk so you don't feel tired?) I will feel very little side effects during the first two weeks of radiation, but the side effects will linger for two weeks after radiation ends. The major risks associated with radiation involve the lungs and the heart because they are the next layers underneath the radiated area. The lung is the first layer under the chest wall, and sometimes the outer edge can get a little radiation resulting in some breathing issues. (I have so many breathing issues right now, I wonder if I would even notice.) He explained that during the scan, they might have me take a breath and hold it so that he could get a better image by separating the lung and the radiated area. He said that issues with the lungs are rare. Because my left side is radiated, the heart is in the neighborhood. It is extremely rare for the heart to become involved resulting is heart-related issues. After this happy conversation with Dr. Dad, a radiology tech took me into the CT Scanning room.

Like all x-ray and scanning rooms, it was cold, and my hot flashes made it feel even colder. The CT Scan is the big donut-shaped scanning machine. The narrow table moves in and out of the machine several times during the scanning process. When I looked at the table, it looked like something out of a torture movie - it had two pairs of stirrups at one end, a cradle-like restraining holder between the stirrups, and a triangular block at the other end. I could not figure out how I was going to lay on this table, and all I could think is that this does not look comfortable! The cradle was for my head, the stirrups were for both my arms and the triangle foam block was for under my knees to relieve the pressure on my back. It wasn't as bad as it looked. When I put my arms over my head, Tech Guy adjusted the stirrups/holders to a more comfortable position. I don't have full range of motion on my left side, so it felt a bit strained. On the ceiling and both walls, situated just outside the CT Scan, were panels that projected red lasers onto me, that I think formed a laser grid. The set up takes longer than the scan.

After my first scan that took about five minutes of me moving in and out of the machine, Tech Guy and Tech Gal came in and place "bebes" all over me - stickers with a metal center to mark locations. Tech Guy read off numbers from the computer screen in the room while Tech Gal place the markers. After she placed the markers, Tech Gal used a sharpee marker to draw lines adjacent to the bebes. After I was all marked up, I finally got to put my arms down while Dr. Dad read the scans. Tech Guy brought in warmed sheet and placed it over me. It felt so good. Dr. Dad ordered another scan, but this time he wanted me to take a breath and hold it during one of the passes through the scan. The second scan confirmed that the first markers were correctly placed.

Next it was time to make the markers permanent so that when I get radiation treatments, the machines will precisely line up with the markers each time, and insure the I am radiated in, and only in, the correct areas. I received six tattoos the size of big freckles. Six! And it hurt! I may have been sliced, diced, poked and needled over the last several months, but these dumb tattoos really hurt. What must a big tattoo feel like when it is getting applied? How did two of my siblings manage to get such large tattoos? (Oops, did I just spill some beans? Oh well, beans are good for you.)

Before this appointment, Molly warned me that "tatoos are addicting." Where does this 10-year-old get her material? It can't be from t.v. because I don't allow the girls to watch WTT - White Trash Television. There goes my future as a side show at the carnival...(Do you remember when people once paid to see a tatooed lady at a carnival? Now , if go to a mall, you can see several of them walking around, and it's free!)

After I got up from being stretched, scanned, marked and tattooed, I unexpectedly felt a little queasy. Fortunately, the radiation area has a "nutrition room" stocked with water, ginger ale, Sprite, and crackers. I felt better after ginger ale and a few soda crackers.

Radiation begins next Monday, September 20, at 8:45 a.m. It will be the same time every day, five days a week, for six and a half weeks. I selected 8:45 because I want to get it done early in the day, and it coincides with dropping off Molly at school. The first treatment on Sept. 20 will be a dry-run, with just x-rays and no radiation. This dry-run is to insure that they marked exactly the right areas to be radiated. I have a radiation ID card that I scan for check-in, no receptionist, just a bar code scan. The scan sends a message to the radiation techs that I have arrived, and that I am in the locker room changing into lovely gown. The ID card is scanned again before the radiation treatment to insure I receive the correct treatment. You gotta love technology!

Whacky thought for the day...
Does anyone but me have a difficult time with the usage of "effect" versus "affect?"

Sept 13th - Happy Birthday Jane!