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



Tuesday, August 24, 2010

Made...

When the foredeck person on a sailboat completes jibing the spinnaker pole - a somewhat tricky maneuver that requires a certain amount of finesse, she/he yells "made." Today I had my last chemotherapy cycle! Afterward I felt like shouting a loud "MADE!" (Translation: A foredeck person is responsible for the stuff that happens in front of the mast -the pole sticking out of the middle of the boat that holds the sails ; jibing means the boat is changing directions; the spinnaker pole is a long metal pole that connects to the mast at one end and the end of the spinnaker sail at the other end; the pole helps the spinnaker - the big colorful sail that sticks out over the front of the boat -stay full of air and helps the trimmer(person pulling a lot of ropes) pull the spinnaker sheet(rope) to keep it full of air; the foredeck person yells "made" so the trimmer knows when she can start pulling the ropes. During a race this all needs to be done quickly. When it is done well, the boat maintains it speed. Yes, I have done this a couple of times, but I often forgot to yell "made.") Now you know more than you ever needed or wanted to know about sailing stuff. Snore.

Over the past two days several people at Mass General Hospital congratulated me on my last chemotherapy treatment. Yesterday I met with my oncologist, Dr. Banana Split, for my pre-chemotherapy check-up. She appeared as thrilled as I am about my last chemotherapy treatment. I told her that I am constantly battling exhaustion. She said for some inexplicable reason, most people feel exhaustion after their third cycle, but not after their fourth. We'll see. She was also concerned about my asthma cough. She wanted to make sure I only had asthma and wasn't sick. Actually, she seemed a little freaked out about the tight sounding cough I was involuntarily demonstrating throughout my appointment. (The sound of my cough worries Chubba and the girls too.) I have lived with this type of cough my entire life, so it doesn't phase me at all. My mom states that I have coughed more in my lifetime than anyone she knows. I had only been taking my albuterol inhaler and not taking my steroid inhaler because I thought steroids were off limits during chemotherapy. I was wrong. Dr. Banana Split anxiously asked if I had the steroid inhaler in my purse, but it was at home. I took it when I got home, and I'm fine. I must admit that I was a little amused by Dr. Banana Splits reaction to my cough. I know, I am also a little warped.

Dr. Banana Split described how my hair will feel and look when it grows back. The hair will be fine and soft like baby hair, but it grows back thicker and curly. What?! Thicker? I will look like Harpo Marx! (I know, those with thick hair want a little less, and those with thin hair want a little more - "the grass is always greener..." or is it "the grass is always thicker...") I hope that I may color the gray hairs that dare to grow back. Hello 1980's short-hair perm that I sported so stylishly. I will be going retro!

I was given a private room again for my infusion. Molly was our ticket to the private room. I learned that when a patient brings an elementary school aged child with them to treatment, they are required to have a private room. Riley is too old to be a ticket. The private room makes chemotherapy much more palatable. I like that it is not totally isolated with a glass door and a large window. If someone wants total privacy, a curtain can be drawn.

Riley survived the chemotherapy experience. She only turned her head a couple of times, but never left the room. Before we walked into the infusion area, she asked if I can talk during chemotherapy. She thought that I wore an oxygen mask. She was a little uneasy when she saw the two very large and wide circumference syringes of the red Adrymiacin that were injected into my port. She said they looked like shots for an elephant. She thought the red color looked like blood. Actually, the red color is much brighter than blood red. After it was over, she said that chemotherapy wasn't so scary. Without the red poison, it reminded her of the i.v. she received when she was admitted into the hospital for dehydration.

Laverne and Shirley, the trial study nurses, stopped by to check on my progress. They manage 16 women with breast cancer who volunteered to be part of a study to compare the effectiveness of two different chemotherapy treatments. When I signed up, the study need 200 more volunteers, but now it is full. During the trial study orientation, I explained to Laverne and Shirley that I have a very tender stomach, and was concerned about vomiting. Both they and I are surprised at how well I have done over the past two months, without one single vomiting incident. I shouldn't get too cocky because it's not over yet. However, I do hear the fat lady warming up her voice.

I will now go through 2-4 nights of very little sleep. I get so keyed up internally for several days before my chemotherapy, that I think it takes a couple of days of me to rid myself of the nerves. I really do not know if it is the nerves, chemotherapy, or post-chemo medications that affects my sleep following infusion, but I am going with nerves. After I got home today following chemotherapy and a celebratory lunch, I slept for four hours. I will put this in my tank for reserves.

Helpful Hint: If you have seven prescription bottles on the bathroom counter, get a black Sharpee pen and write in big letters the name of the prescription on top of the lid and down the side of the bottle. The eliminates searching for glasses to read the name of the prescription written in microscoptic print.

I AM THRILLED THAT CHEMOTHERAPY IS "MADE!"

Whacky thought for the day...
I love the saying, "It ain't over until the fat lady sings!"

Sunday, August 22, 2010

Mirror, Mirror...

Every time I look in the mirror, I am caught off guard by the person looking back at me. I don't think I will ever get accustomed to the bald-headed me. I used painter's tape to remove some of the stubbles, but found that rubbing a washcloth against my scalp in the shower worked well to remove the remaining signs of hair. My head is not shiny bald like Uncle Fester, which I think would be kind of cool. It is a flat white with a few remaining stubbles clinging for their existence. The freshly exposed skin is very white, and I wonder if this is the color I was as a baby. My face is a different color than my scalp, making me look as if I am wearing a mask.

I no longer walk around my yard or the neighborhood without my head covered. I am afraid that I will scare one of the eighteen children who live in my neighborhood. Stubble was just weird. Bald is scary.

Next Tuesday, August 24, I go in for my last chemotherapy infusion. It will be a family affair with all four of us going to my final treatment. Tonight Riley was already freaking out about the needles, which is precisely why I want her to go. She needs to see that chemotherapy isn't as scary as it sounds. I feel very lucky that I was prescribed only four cycles of chemotherapy. If my cancer would have travelled to more than one lymph node, I might have needed three more months of chemotherapy. Note: Early detection allowed me to have only two months ,and not five months of chemotherapy - Have you had a mammogram this year?

The past two weeks between cycles presented a shorter laundry list of side effects, but much more lethargy. I had very little nausea, and didn't need to take a single compazine. I had some strange joint pain in my wrist, hip and ankle. For four days I had a very sharp pain in my heal that shot up my leg to my hamstring. But my biggest battle was against exhaustion. I spent most of today in bed again. If I have a high or regular energy day and do something physical, like working in the yard, I pay for it the next day. I am very fortunate that I am able spend the day in bed. However, I'm tired of being tired.

Before chemotherapy menopause was knocking on my door. Once chemotherapy began, menopause walked right in and made itself at home. I was warned that this would happen. The hot flashes are a strange sensation; first my face gets very warm as if I have a sunburn, and then the rest of my body gets hot, like someone turned up the heat. Alcohol seems to exacerbate the situation. I am not sure if alcohol is a good thing during chemotherapy. As one ob-gyn said to me during pregancy, if you need a drink, go for it - the stress is worse than the alcohol on your body; just don't overdo it. I've had only about 5-6 drinks over the past 6 weeks. I know, I'm a real boozer.

I noticed my first staring incident this week. While shopping at our local grocery store with a scarf on my head and my pink ribbon earrings, I noticed a woman in her mid-30's with a young daughter couldn't keep her eyes off of me. We kept passing each other in the aisles, and later were in view of each other while paying for our groceries. Each time we were in sight of one another, she kept looking at me. It didn't bother me at all. As a matter of fact, at the time I was thinking that I hope my "look" makes her think about getting a mammogram.

Whacky thought for the day...
Who came up with the term "laundry list?" If I made a list of items in the laundry, it would take pages. And...How does laundry pile up overnight with only two kids in this house? Is there a dirty laundry fairy that comes at night when we're all asleep?

Aug 19 - Happy Birthday Meg!

Wednesday, August 18, 2010

Vertically Challenged...

I have the energy of a deflated balloon. For the last 4 our of 5 days, I could barely get out of a horizontal position for more than an hour at a time. I didn't know that my body could attain this level of exhaustion. I almost feel asleep while eating dinner! I wonder if all the weeks of sleepless nights have caught up with me, or if my body finally realized that it is going through chemotherapy. The good news is that I need less make-up to hide the dark circles under my eyes.

(Vertically challenged doesn't only apply to my energy level. I have been vertically challenged my entire life ... I'm short. However, I do not mind being, or being called short. The smaller the package, the higher the value!)

The prickles on top of my head are starting to evacuate my scalp and cover my pillow. I think it is tape time! I might try blue painter's tape to defuzz my head. I don't know if I am brave enough to try the New Mexico duct tape dance. I just hope I have enough energy to stay vertical long enough to finish the job.

Whacky thought of the day...
My brother, J, is a Grandfather!
His daughter, Morrigan (almost 28) had a baby girl on August 11.

Welcome to the family Evelyn Irene Blatsos. She looks exactly like Morrigan as a baby, and a McNamara, except for the Greek black hair.

Friday, August 13, 2010

Tuesday, August 10, 2010

Three Out Of Four...

Yesterday I went to Mass General Cancer Center for my usual day before chemotherapy lab work. I would normally have my check-up on this day, but because I changed nurse practitioners, I had my check up today, before chemotherapy.

There was a little misunderstanding about the lab check-in procedure, making me wait almost an hour. I didn't mind too much because people watching was as good as inside an airport. While I was waiting, a very pretty young woman in her 20's, or maybe early 30's, came over, introduced herself and asked me about the technique I used to wrap my head with my scarf, a beautiful Hermes scarf. (Neighbor Mary loaned me three gorgeous Hermes scarves.) To explain how I wrapped my head, I whipped the scarf on my head and demonstrated how I folded, wrapped, and twisted it around my head. Yes, I did this in a waiting room full of people. I have no problem baring my head in public. I just don't walk around with a naked head, except in my neighborhood. Back to the young woman from Salem...she was waiting with her young husband for her first chemo treatment. She has stage 3 Hodgkin's lymphoma, blood cancer. She told me that stage 3 lymphoma is curable, but stage 4 lymphoma is most often fatal. Very scary. She has 6 months of chemotherapy, with cycles every other week. This make my 2 months of treatment look like a cake walk. Miss Salem has beautiful long hair, and is concerned about losing her hair. She is going to buzz or shave her head before it begins falling out. Her doctor told her that it would take a month before her type of chemotherapy makes her hair fall out. I think shaving is a good idea, especially with long hair. Waking up in the morning with a giant spider web of hair in your face, and a nest of hair on your pillow, is disgusting. I send her many good wishes and prayers.

Today my 8:00 a.m. check up with the new nurse practitioner went well. She knew everything about me before she came in, perhaps except my shoe size. She knew that we moved here from just outside Napa, she knew that I have two girls, and she knew that I was having strange and painful ankle pain, and best of all she knew about my surgeries and cancer treatment. She grew up in San Francisco, moved to New England when she was 12, but moved back to California after nursing school. We had a lot of California talk. (You can take the girl out of Northern California, but you can't take Northern California out of the girl.) I just now realized that I forgot to pick up my medicine for thrush that I developed as a side effect of chemotherapy. My sore throat is caused by thrush. Thrush is a bacteria that forms in the mouth, and is most commonly found in babies.

I am having difficulties with my memory, and I forgot to tell Nurse California about my memory loss when I gave her my laundry list of side effects. I talked to my mom on Saturday, and she mentioned that I was repeating some of the same stuff from our Friday phone call. After I hung up, I told Chubba that I had no recollection of speaking with her on Friday. This bothered me, and the more I tried to recall our conversation, the more I was sure I didn't speak with her. Chubba and Riley assured me that they saw me sitting on the couch and talking with her on Friday. I forget other things as well, but nothing major. I also tend to repeat myself because I don't remember what I said to whom. Not only am I losing my hair, but I am losing my marbles.

My laundry list of side effects for these two weeks: hair loss, sore throat-thrush, difficulties sleeping, metallic taste, slight nausea, exhaustion, memory loss, and some bathroom related stuff of which I will spare you the details. Other than these minor inconveniences, I feel great!

Molly (9) went with us to chemotherapy today because I wanted to take the mystery out of it for her. Holding hands while walking into the hospital she asked me, "How many years do you have to go to medical school?" She liked observing the needle as it was inserted into my port and the I.V. drips hooked up. She said that it looked the same of the I.V. she had when she was hospitalized two years ago for severe asthma, except she had the needle in back of her hand. She was very intrigued with the reflexology/accupressure on my feet. She asked Magic Hands several questions. She asked about the map on the feet and where the spine is located. She asked if I feel it in my body as she works that part of the body. She also asked if you can use this technique to work on emotions. The monster called chemotherapy didn't seem so monstrous after all. Much to Riley's (15) chagrin, I am taking her to my last treatment in two weeks. When the needles come out, she will definitely look away.

I have three out of four cycles completed. I am going to celebrate after the fourth chemo, but not sure how I will celebrate. My sister would say, go buy a new pair of shoes.

Whacky thought for the day...
I believe that there are three places where it is appropriate to dress up a bit: church, travelling via airplane, and the doctor's office. Church is obvious, I hope. Spending at least $300 for flying - I would dress well for any $300 event. Plus is you need something, and the airline employee must make a judgement call, (they have more power to make changes than you know,) Chubba and I observed that you will get much further with them if you are dressed well and are polite. (Chubba travelled three out of four weeks with Nike, tons with New Balance, and numerous trips to Asia the past 18 months and with JMI.) I try to dress well for the doctor's office, even when I don't feel well. I think they take you more seriously when questioning the prescribed treatment for aches and pains when you put a little effort in your appearance. We all don't want to believe that we are judged by how we dress, but it is a proven fact. Too bad, because I love comfy sweats!

Sunday, August 8, 2010

Are We There Yet?...

I am half way through chemotherapy. With the risk of sounding like a whiner, I am ready for it to be over now. The last few days I have felt somewhat normal, with the occasional queasy stomach. Knowing that I am going to feel not so great after Tuesday, for an entire week, is bumming me out. I feel like I'm a little girl, back in the car, whining to my parents, "Are we there yet?" (I hear that question anytime we drive to a destination further than the mall.)

After chemotherapy I have morning sickness type of feelings that can creep up on me at anytime, but medication zaps it right away. The second week after chemo, I am exhausted. However, this second week, I am picking up my own leash and taking myself for a walk every morning. But, after I eat breakfast, I go back to sleep for 3-4 hours. I have two other side effects that are bothersome: a metallic taste in my mouth and a sore in my throat. My taste buds are shot. Water tastes metallic. Food doesn't taste like it should. I get a craving for something, but am disappointed when I eat it because it doesn't taste right. Unfortunately, it doesn't keep me from eating! My throat feels like they just pulled out the tube from surgery. I knew before chemotherapy that sores in the throat and mouth could form as a side effect. Gargling with hot salt water helps.

I don't know why I am bumming because I only have to go in for chemo every two weeks. My oncologist told us that they type of chemotherapy I am taking, CA, used to be given even three weeks because patients would get so sick. She said that it would take patients three weeks to recover from vomiting and other side effects. Medicine has come a long way in a short time; the Emend and Compazine are taking care of the nausea for me.

My head still looks like an anorexic porcupine. A few more white spots are beginning to show. I asked my mom about the scar on my head, and she said to blame my brothers. That sounds about right, but it probably is from one of the "agony of defeat" falls I took skiing as a kid. If you ski hard, you fall hard. My head always feels like I have wet hair - not like I have phantom hair syndrome, but the coolness of the scalp. (I don't know if there is such a thing as phantom hair syndrome - I just made it up.) If I am outside in the garden early in the morning without a hat, I can feel the sun the moment it touches my head. I am never in the sun without a hat, nor do I leave my neighborhood without some type of head covering. My most popular hat is one that says, "Cancer Sucks" on the front. It got the best reactions at the hardware store. I love the smell of hardware stores; it reminds me of my childhood, Merced, McNamara Hardware, and all the men standing around telling lies.

Whacky thought for the day...
Yesterday I walked to and on the beach. At 7:45 a.m. a woman had her camp set up: beach chair, blanket, ice chest and stack of magazines. Can you say "Massachusetts raisin?" (Note to Californians: Most east coasters are obsessed with tanning. I see more real dark tans here than I ever did in California.) Can you say "melanoma?"

Thursday, August 5, 2010

Feel Better, Look Good...

On Monday the girls and I attended a program sponsored by the American Cancer Society, "Feel Better, Look Good." For two hours, experts demonstrated how to wear scarves and hats, and how to apply make-up to make to enhance our features. The goal is to make you feel your best during chemotherapy.

I was clearly the youngest person by 15 years. I think the next youngest person must have been 65 years old. So technically, I was the youngest by 16 years, but who's counting? Every woman in there could have been the girls' grandmother.

The scarf tying demonstrations were the most helpful for me. We learned that a silk scarf doesn't stay in place on a slippery bald head - makes sense, but never thought about it. To keep silk scarves in place, you must first put on a cotton cap that is made specifically for chemotherapy patients, similar to the caps placed on newborn babies. The scarves will cling to the cotton. We also learned how to make a head-wrap from a t-shirt! First you cut off the upper part of the shirt, straight across from armpit to armpit. Then, you strategically place the remaining tube on your head and start wrapping and twisting. It really worked and was super easy. I volunteered to be a demonstrator - surprise, surprise. I haven't cut up any t-shirts yet, but I'm close.

There was a small discussion on wigs. The presenter warned about wearing wigs by the BBQ or cooking in the kitchen because they melt! Naturally I had to comment out loud, "Now there's a reason for not having to cook." Just call me "Ice Breaker."

I was the only woman with an exposed head, a freshly buzzed head. I wore a hat, but took it off during the class. One woman wore a scarf, and every other woman, about 20 of then, either wore a wig or had not lost their hair yet.

We were warned about problems with bacteria forming on the scalp. More grossness. We must keep scarves, hats, and headbands worn under hats clean.

The make-up portion was the most fun for the girls. I was given a large cache of free make-up & moisturiser by companies such as: Chanel, Clinique, Bobbie Brown, Mary Kay, Origins, Estee Lauder, Maybeline, Max Factor, Aveda, and NYC. Some of the other ladies had products by other companies that donate make-up to the American Cancer Society. The make-up artist gave us some great tricks of the trade, such as dabbing vs. rubbing on concealer. I learned how to draw on eyebrows if mine should happen to fall out. (So far, eyebrows and eyelashes are intact.) By the end of the session, all the women looked fabulous!

The organizer had to open an extra stash of make-up to fill in missing items for a few women. She ended up with some excess items, and kept feeding them to Riley and Molly. Riley was pleased to receive a $40 Chanel mascara, even though she doesn't wear mascara. It was the "Chanel" part that excited her. Molly was excited to receive her first "lipstick." She has owned lip gloss before, "but never lipstick!" The thrill of new make-up starts at an early age, and never gets old! (I rarely wear make-up, but without my hair to hide behind, I try to wear make-up every day. I don't know how you beautiful make-up wearers do it on a daily basis. However, I do feel good, and look better with it. )

With our freshly painted faces, the girls and I decided that lunch and shopping would round off the day. I wore my hat and pink ribbon earrings, but it was fairly obvious that I don't have any hair. Our local mall if just across the freeway from Mass General North, the location for the "Feel Better, Look Good" program. The Northshore Mall has kiosks located down the center, selling cell phones, lotions and potions, hair accessories, etc. Some of the sales people are as aggressive as carnies trying to get you go throw darts at neoprene balloons. These sharks usually approach with the line, "Can I ask you a question?" I always reply, "You just did," leaving then puzzled. However, on Monday, I got a hall-of-fame line thrust at me by a hair crimper and flat iron kiosk salesman: "Excuse me, can I talk to you about your hair." Without even slowing down, I replied with a chuckle, "I don't have any hair!"

Whacky thought for the day...
I was an independent sales rep for 23 years. For some reason, I thought that in sales, it was important to know your customer before you try to sell them something. Maybe I would have sold more if I tried the kiosk method.

Monday, August 2, 2010

Hair Raising Event...

I'm bald! I'm bald! Actualy...I have stubble! I have stubble!

Last night about 81 people came by to witness the most visual side effect of chemotherapy, hair loss. It was also an opportunity for me to say "thank you," first hand, to many people who continually support me through this adventure. But, before, I could muster the willfulness to shave my head in front of a crowd, many boys stepped up to shave their heads; and girls, moms, boys, 3 dogs, and one old "townie" dad added pink their hair! The first brave, maveric head-shaving volunteer was an 8th grade boy who is a caddy at a private golf course - he better keep his hat on! Not only did get his head buzzed by and electric shaver, he lathered it up and shaved bald! His 6th grade brother followed suit! Amazing! Yes, this was voluntary on their part, and their mom looked on the entire time. Their scalps were very white, almost bluish, compared to their skin color. I thought they looked like a couple of fireflies guiding their mom in the dark. My 4th grade neighbor lathered up again for a fresh clean shave of his perfectly round head, and then his father (who was already follically challenged) went for the freshly shaven look! Two second grade boys are now sporting pink mohawks around town! One second grader cut off his beautiful curls to get a close buzz, and one 5th grade boy got a very close (almost bald) buzz, revealing the biggest, bluest, Irish eyes in town. Every single one of the boys looked so handsome - their eyes and attitude sparkled!

I am at a loss for words to describe how touched I am by the conscious decision by the boys to shave their heads out of concern and respect for breast cancer and my journey. (I am especially moved by the older boys because they are aware of all the fallout (no pun intended) that can result from shaving their heads.) Angels come in all forms.

Manchester has gone pink! There are a lot of people walking around Manchester today with pink highlights and streaks in their hair. This is the real deal hair color, not that spray on stuff in the drug store. Fortunately, it will wash out in about 2-3 weeks, without any grow-out lines.

Just before dark, I stepped up to the plate ( bar-type stool) for my big shave. My mom, dad & brother T watched the shave in Green Valley, CA and my sister and her husband watched in Los Gatos, CA via skype. Riley and Chubba each held a laptop so that they could witness my buzz. I removed my pink hat to reveal my pink hair that had not been washed in two days. It was a little matted down, and not so pretty, but realtively intact. With many eyes watching, I stood on the deck and demonstrated how I cold effortlessly pull chunks of hair out of my head. I didn't feel a thing. Watching the faces in the crowd as I was pulling out the hair was interesting. The expressions ranged from shock, to horror, to amazement, to awe. Because I still had thick hair - in certain areas, the master barber, Sweeney Steve, had to cut some of it with a scissor. (I chose Sweeney Steve to cut my hair because he was an expert after shaving all the kids, and I trusted he wouldn't cut off an ear or take an eyebrow. Plus, he has a little experience with his own head!) I only closely buzzed my head, I didn't lather and shave. My scalp is a little sore in the front/crown area, as if I had a deep bruise, but it was sore before the shave. It must be the cells dying. Upon completion, complements were generously offered to me. Some said that my eyes look bigger. Some said that I have a nice shaped head. What I was hoping for was "taller and thinner." Oh well.

My only comment is that my ears are very small. Really. I didn't realize that I have such small ears. Have you seen my dad?! He wasn't called "Dumbo" as a kid for no reason.

When I look in the window or mirror, it is hard to believe that this fuzzy headed person is me. It doesn't make me sad or depressed, just puzzled. There are some white spots where the hair had already fallen out to the follicles amongst the dark fuzz . In no time, I will look like a dalmation. At that point, I might need to think duct tape. Pictures will be posted soon.

I hope last night shed a little light on breast cancer for young and old, and possibly instigated unique family converstaions. Maybe it ignited a spark in one of the many children running round to become the Jonas Salk for breast cancer.

Last night is an incredible memory that I will keep with me forever...

I feel truly blessed.