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



Friday, December 24, 2010

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!

Monday, December 6, 2010

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.)

Sunday, November 28, 2010

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?

Thursday, November 25, 2010

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!

Tuesday, November 23, 2010

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!

Monday, November 8, 2010

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!

Saturday, November 6, 2010

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.

Tuesday, November 2, 2010

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!

Thursday, October 21, 2010

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?

Saturday, October 16, 2010

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?

Friday, October 15, 2010

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.

Thursday, September 30, 2010

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.

Wednesday, September 29, 2010

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!

Wednesday, September 22, 2010

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.

Thursday, September 16, 2010

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.

Wednesday, September 15, 2010

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!

Friday, September 3, 2010

Heat, Hurricanes and Radiation...

There are several reasons why I have not written in a many days: 1. I am in a holding pattern between chemotherapy and radiation, so I don't have anything medically exciting to report. 2. I normally write after midnight, and I have been sleeping instead. (It is 1:25 a.m. right now -my post time doesn't match the actual time. If I were a real writer, I know that I would become truly nocturnal, and only see my family at dinnertime.) 3. My mood experienced a dip, and I had to wait for it to rebound.

I was warned that sometime I will hit an emotional wall. Fortunately, my wall bashing lasted only one late afternoon/evening last week. I just could not stop crying. The more I tried to gather my composure, the more I cried. (It was like the more you try not to scratch the mosquito bite, the more it itches.) I felt bad for the girls because it is very disconcerting to see a parent cry. They came in and tried to read me a book to cheer me up, but I was non-responsive. Riley confessed to me later that she was upset by my crying, but she worked very hard to "hold it together." Molly hasn't said anything about it. I wasn't going to write about this episode in my blog because I am embarrassed by it, and felt that it makes me look weak. After some thought, I realized that crying one night after major surgery to remove cancerous tumors, recovering from having my entire mid-section cut open for reconstruction, and then going through eight weeks of chemotherapy, is probably humanly normal. Normal is okay, I think.

Hot flashes are my battle du jour. They are a great combination with the heat wave we are experiencing in Massachusetts. Like Oregon, not all homes have air conditioning. (I know you Californians and New Mexicans are thinking we are uncivilized, but we have great heating systems!) Our home has only one small air conditioning unit for the master bedroom. Guess where everyone is sleeping? The only good thing about the heat is that I don't feel that hot flashes because my entire day is one continuous hot flash. The only time I feel them is in air conditioning, making air conditioning a mixed blessing. When I have a hot flash my entire face gets flushed red. Strangely, my white, bald scalp doesn't get red during a flash, only red, mask-like face.

I met with my radiation oncologist, Dr. Dad, this week. He referred to me as the "Californian." We must be rare in this part of the world because many of the doctors refer to me as the "Californian." I wonder if they put it next to my name in the Mass General records. He asked me a lot of questions about my chemotherapy, wanting to know what was the worst part about it. I responded that the a worst part was the extreme exhaustion after the third cycle, but that actually chemotherapy wasn't that bad. Throughout our appointment he said to me, "I like you easy going Californians." (To all of you out west, I am doing my best to represent my birth state well.) We set a date of September 14 to get mapped. If I understand correctly, on the 14th Dr. Dad will make a grid of the left side of my chest, and map out exactly where they want to target the radiation. I will get a couple of tattoos - little dots, that will designate the exact locations for for radiation. (I can confidently say that these will be the only tattoos that I will ever get. I know, no fun.) Radiation will begin around September 21st. I will have radiation every day, Monday through Friday, for six and a half weeks. After the mapping which can take up to two hours, and the initial radiation that is a double check on the mapping, each radiation appointment will take no more than an hour. I will be in the radiation room for about 20 minutes, and the actually radiating takes only about 4 minutes. Most of the time is dedicated to set-up of the machine and me. The main side affect of radiation is feeling tired. After a couple of weeks, my skin will also feel sunburned. Someone, I don't remember who, told me about a cream called Jean's Cream, that works wonders for the skin during radiation. I found it at the cancer boutique at Mass General, and bought a tube of the $45 cream. It was highly recommended by the staff too. It is helps radiated skin, I wonder what it would do for non-radiated skin, like my face?!

It is 2:14 a.m. and Earl if finally arriving. In the four years we have lived on the east coast, this was our first hurricane warning! Yep, we were pretty excited. However, it looks like it might just ended up being a tropical storm. The rain is coming down hard, but the wind hasn't picked up yet. Everyone around here was fairly nonchalant about the whole thing - kind of like native Californians and earthquakes.

Whacky thought for the day...
What would your rather experience...an earthquake or a hurricane?

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.