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

Thursday, September 30, 2010


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 earthquake or a hurricane?