It is more important to know where you are going, than how long it takes to get there.

Monday, October 10, 2011

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: 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.

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:

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.

Friday, March 25, 2011

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!

Monday, February 21, 2011

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...

Sunday, February 13, 2011

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?

Saturday, February 12, 2011


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 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!

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?

Saturday, January 15, 2011

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.

Thursday, January 13, 2011

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?!

Monday, January 3, 2011


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.

Sunday, January 2, 2011


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!