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



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!