Chemo Diet...

I've been doing a little cancer reading these past few day while home feeling nauseous and looking green. With my red and pinkish hair, I looked the Incredible Hulk with his hair on fire!

It is a fact that the majority of women undergoing chemotherapy treatments gain weight! I call foul play! Unfair! How can this be so??? I though it was just the opposite! Oh no. Not the case. I was hoping that my weight loss would be: 6 months @ about a pound a week = approx 20 pound loss. (Who said I wouldn't ever use my math degree?) This Thanksgiving Day balloon doesn't need anymore helium!

Besides losing the hair on my head, I might also lose my eyebrows and eyelashes. Not the eyelashes! Anything but the eyelashes! I won't wear a wig, but I will wear false eyelashes; professionally applied so I don't end up like Lucille Ball in the movie, "Yous, Mine, Ours." I wonder who Tammy Faye Baker used?

Whacky thought of the day...
If you are under 45, do you even know who The Incredible Hulk, Lucille Ball and Tammy Faye Baker are? (The original "Yours, Mine, Ours" with Henry Fonda and Lucille Ball is one of my all time favorite movies! Yes, I own it - not on video, but on DVD!)

Heart and Soul...

Nurses are truly the heart and soul of a hospital. (Same at Memorial Elementary School.) They spend more time with patients than anyone at the hospital. From my observation, not only do nurses provide medical care, they also are psychologists, entertainers, company for the lonely, magicians, and the public relations people for their hospital. If you were to ask anyone about their stay at a hospital, the first comment is usually regarding the quality of care by the nurses. They leave indelible impressions on their patients.

If nurses are the first comment, the gourmet hospital food is usually the second comment made by a former patient. Just think, if nurses could cook the food too...!

My nurses on Tuesday were no exception. When I arrived at pre-op, I felt welcomed to their little corner of the world. My pre-op nurse made sure that I understood the procedure, if I had any questions, and in her own, discreet way, checked to see if I was comfortable with the (minor) surgery. She said that she was sorry that I had to be there, and about the upcoming mastectomy. I gave my regular response,"It's just a boob, nothing important to keep my body functioning." When I was asleep, she turned off the light. When I was cold, she somehow knew to bring me a warmed blanket. (I love those blankets right out of the warmer! Wouldn't it be nice to have a warmed blanket every night during these frigid New England winters?!) When I looked bored, she came in for a little chit chat. (She just got back from visiting her son's family in Burlingame, CA. She said that her son, and half the families in her grandchildren's school, are renters because of the home prices. She was shocked to see a 2bed/1bath home for $1.2 million! I know, crazy. Welcome to the Bay Area...and people think the North Shore is expensive.)

I was impressed by how fit all the nurses are in day surgery. I have never seen so many fit co-workers in one place, other than at Nike. The grandma pre-op nurse was amazingly fit and strong. She is a avid bike rider. They must all be enthusiastic cyclists because some other nurses were talking about the Boston to Provincetown ride and a ride from somewhere in Canada to Portland, Maine. It takes a great deal of strength to constantly be moving patients, equipment and beds around. Plus, they are on their feet all day, unless they are putting on a floor show with strange equipment, or singing "I Left My Heart In San Francisco." However, their strongest muscle was their attitude, and it went a very, very long way!

Shout out to Mer P. - We all know that you will be one of these super nurses! Start working on your song and dance too.

Whacky thought for the day...
Television is grumpifying teenage girls. Bring back "Happy Days" with silly teenagers.

I have observed for many years that 97.6% of all American teenage girls have a huge chip on their shoulders, or they walk around completely aloof, bordering on terminal rudeness. The only time they show any semblance of joy or enthusiasm is when playing a team sport. (Unfortunately, this happy attitude is left on the field or court when the game is over.) If you watch shows targeting this demographic, all you see is drama, drama, drama. Very rarely will a character smile or show genuine happiness. It is not cool to be happy. It is not cool to show any signs of excitement. It is not cool to enjoy the moment. Even Riley slips into this teenatitude periodically, but fortunately Molly is usually nearby, doing something goofy, making Riley snap out of it.

Nowadays, high school girls act like grumpy old ladies, and nurses (sometimes) act like silly teenagers. I'll take silly teenagers any day of the week!

Clocks With Batteries...

Yesterday I had to be at Mass General Hospital in Boston at 7:30a.m. for a 12:45 p.m. surgery. I decided to take the 6:25 a.m. train, and risk being a little late, which proved to be no problem. (Yes, I took the train by myself because I didn't want Chubba sitting around. I kind of like this time alone on the train. Really, I had a root canal that took more time than this day surgery.) I set my alarm clock for 5:30, giving me plenty of time to beautify myself before the surgery. I slept terribly, flipping and flopping all night like a freshly caught fish on the deck of a boat! I slept for about 20 minutes at a time. After one stint of sleep, I decided to give a one-eye peak at the clock. It was flashing! The power went out! What time is it?! I stumbled downstairs to the cable box clock, the only reliable clock after a power outage, and discovered that it was on 3:30. Phew! Chubba's alarm clock has back-up batteries, but they were dead. I guess I better change then when I change the smoke alarm batteries - which I never do. I usually change the smoke alarm batteries when they make the obnoxious, high-pitched beeping sound in the middle of the night. Does anyone other than firefighters, and my friend Bubble Wrap, actually change the batteries in their smoke alarms as recommended, on daylight savings?

The pre-op instructions said no make-up. I try to not go anywhere without mascara for fear of scaring small children. At 5:45 a.m. I was thinking about the song "A Little More Mascara" from La Cage Aux Folles, so I plastered it on! Why can I remember a song from a Broadway musical I saw a million years ago in The City, aka San Francisco, with my brother, T, but I get the words "asthma" and "cancer" mixed up? Maybe I need brain surgery too.

I arrived at 7:50 for my 7:30 check in. Fashionably late. I had to put my necklace - 40th birthday gold locket with pictures of the girls in it, and wallet in the safe. They asked me to remove my wedding ring, but they would have to cut off my finger to get the ring. Since moving to the East Coast, I somehow managed to blow up like a Macy's Thanksgiving Day balloon. I am still looking for the release valve. Can you say, "s t r e s s - e a t i n g?"

After changing into a stylish hospital ensemble, pants, top & robe, I sat in the waiting area for only a short time. I walked to a curtained off pre-op"room" that was only big enough for the bed, a chair, an IV stand, and a few instruments. There were over 25 of these "rooms." I was curtained off only on the sides, which made it possible for me to watch the parade of doctors - some frighteningly young, nurses, med students, and techs go by. Since I was only divided by curtains, I could hear the people talking on either side of me. One neighbor, who sounded like an older lady, has had two hips replaced, two rotator cuffs replaced and was there for her back. She must be bionic by now. She kept telling the doctor that he looked too young to be a doctor. He kept telling her that botox made him look that way. I bet he was barely into his 30s. After a short time, I was wheelchaired off to radiology for another mammogram. Been there, done that. The nice young girl wheeled me through the bowels of the hospital to get to radiology. Clearly, remodeling has not hit everywhere yet. This area and the pre-op area could use a good cleaning with Mr. Clean Magic Erasers. (If you haven't tried these magical cleaning tools, you need them!) Dr. T. Best told me that Day Surgery will be in the new building currently under construction, adjacent to the main building. It will be open next year, 2011, for the hospital's 200th anniversary. Mass General is the third oldest hospital in the US. Remember that little tidbit for your next Trivial Pursuit game.

I had another mammogram on the right side. After this smashing event, I went into another room where a I was put into another mammography machine, but with a moon-shaped cut out in the upper smasher paddle, and a light projecting grids onto my smashed object. The radiologists were pinpointing the tiny metal marker that was placed inside my breast after the MRI biopsy several weeks ago. Next, they numbed the skin with a shot and inserted a wire down to the marker. I had to look away so that I wouldn't get poked in the eye. (During this procedure the saying, "That's better than being poked in the eye with a sharp stick" kept coming to mind. And the revised version, "Better than being poked in the eye with a long breast wire." The original is much better.) During surgery, Dr. T. Best followed this wire down to the marker and removed a mass around it. As the radiologist we doing the procedure, the two radiologist, x-ray tech and I were just chatting away. It would have been a nice little coffee klatch, except there was no coffee, and I was partly naked.

I was told not to move my right arm for fear of moving the wire. I kept it locked to my right side like a tin soldier.

Back in my curtained room, I watched more of the unending parade, read a little bit, and then finally feel asleep. When I woke up, I was famished. All I could think about was an In-N-Out cheeseburger with grilled onions, hold the tomato. Sorry non-Californians, you have no idea what you are missing! Five Guys in Gloucester is the closest we have found to In-N-Out, but not quite. (I am nauseous right now, so this writing this is not a good thing.)

At about 1:30 Dr. T. Best and a surgical nurse wheeled me into the operating room. Fashionably late. I think, this is the first time I actually had the surgeon wheel me in and out of the operating room. (I had 3 major surgeries - two resulted in babies, and 1 day surgery prior to yesterday.) Moving the bed around is no small feat because there are only millimeters for clearance on either side of the bed and the doorways. The surgery only took about 30 minutes. There were 4 RN's in the room and Dr T. Best. One nurse sat by my head that was curtained off from the rest of my body during surgery. She was the one who gave me the cocktail so that I wouldn't feel anything. Actually, we talked about cocktails as it was taking affect. And would your believe, she commented on my eyelashes, saying they were the longest eyelashes she had ever seen. See, La Cage was right, you should never go without mascara! I was awake the entire time and only felt a couple of sharp pains near the end of the procedure - no biggie. Dr. T. Best lived up to her nickname. Since the surgery - no pain, no swelling and no bruising. I have not even taken the prescribed vicodin.

The six of us ladies also had a bit a chit chatting before and after the procedure. Within the topic of conversation, I said something to Dr. T. Best about having a life. She said that being a breast surgeon is great because there are almost zero complications, and she very rarely gets phone calls when she is not at work. She clearly enjoys her job. I also learned that she goes to a dude ranch near Steamboat for vacation. I will give Steamboat a shout out as a great family ski destination.

The recovery nurses were quite entertaining. I didn't realize that a floor show was included. They were singing, looking up shoes on the computer I could see from my bed, and wheeling each other around with some weird contraption that looked like a bike mechanic's stand, pretending it was a pump for a well. One nurse was leaving in a couple of weeks for a trip to Northern California. She was spending one day and night in San Francisco, focusing on Chinatown, but didn't know where to stay. I recommended The Orchard and The Juliana on Bush St., and The Golden Gate Hotel on Post St. as smaller boutique hotels located close to Chinatown. Again, I wonder how I can remember the name of these hotels and the streets, but I get "asthma" and "cancer" mixed up?

I observed one odd, and somewhat disturbing situation while in recovery. Since there were a lot of unused curtained rooms, a young female doctor sat with an even younger male doctor - hopefully a med student, sat down in the middle of everything, for all to see and hear, and went over pain medications. The young woman doctor wrote down the numbers 1-9 on a piece of paper and asked the young guy to tell her what he knew about pain medications, and where they fit on the list. He went blank, and could not think of anything! I wanted to shout out: Codeine, Vicodin, Demerol, Morphine, Oxycontin, Tylenol, Ibuprophen. I kept thinking, "Holy shit! I hope this guy doesn't make any decisions!" (Oops, my 80-something Godmother is now reading this, and I better watch my language. Actually, I think I heard her say those exact words at my niece's recent wedding. After all, she raised a house-full of rambunctious kids. Hell, she is probably one that taught it to me.) Anyway, I didn't stare at the woman doctor and guy when they were talking; sometimes I pretended to read or sleep. Actually, I didn't listen to too much of their conversation because it wasn't that interesting. I read several chapters in my book, "The Women." It is about Frank Lloyd Wright and the women in his life. (When I grow up, I want to be an architect.)

Just as I was getting dressed to come home, I got very nauseous. A nurse gave me a nice parting gift of crackers, a gingerale, and a barf bag. I know this sounds strange, but it was a nifty barf bag. I was a collapsible blue plastic bag with one end stretched over a circular cardboard ring. Fortunately I didn't use it, and will keep it in the car for any carsick emergencies.

When Justin and the girls picked me up, the girls were uncharacteristically quiet. I don't think they said more than 3 words each on the entire ride home.

Later in the evening, Riley(almost 15) privately confessed to me that she was very scared when she saw me be wheeled out in the wheelchair. She said that I looked so helpless. What?! My hair looked good, I was dressed in my finest, and I even had on lipstick! I told her to tell me immediately when she feels this way, so I can assure her that I am okay. I also said that I will be honest when I don't feel okay.

I had to coax Molly (9), aka Little Miss Keep Everything Locked Inside, to tell me how she felt when she saw me in a wheelchair. She finally admitted that she is afraid that "all of this" is going to happen to her. I learned that this is a very normal reaction for someone her age. With the negative results on the BRCA genetic tests as evidence, I told her that this isn't something she can get from me, unlike her short height and her clever wit. I said that when I was her age, I was afraid of stuff like this too, but I'm not afraid anymore. (Well, sometimes I have my moments.)

Today I feel nauseous if I am up for too long. This is why it has taken me all day to write this jibberjabber.

Whacky thought for the day...
Why do zoos get a bad rap?
I was recently talking with a breast cancer survivor that is suffering her fourth infection since her reconstructive surgery two years ago. I mentioned that I am going to Mass General, and she said that she didn't go there because she heard it is a "zoo."
Why when places are busy or chaotic, we say it is like a zoo?
Have you been to a zoo lately? They are very neat and orderly. They are better shape than most kids' rooms. Mine included.

Down The Drain...

Warning: If you get squeamish reading about medical stuff that involves body liquids, you might want to skip the next paragraph.

I mentioned drains a couple of times. This is what I know and remember...Drains are put in after surgery to remove excess fluid that builds up under the armpit by the lymph nodes, but only on the operated side. (One side = one drain. Two sides = two drains.) The surgeon connects the drains during surgery, and they stick out of under the armpits. The drain is a long, clear, rubbery, 3 foot long tube with a clear football shaped ball at the end to collect fluid. The ball is about the size of the pump on a blood pressure cuff. The drains remain in until the fluid production ceases, which can be as long as 10 days. Yes, I will be walking around with tubes hanging out of my armpits, under my baggy clothes. I only hope that it is cool weather. Twice a day I will empty the fluid into a measuring cup, write down the amount of fluid in a journal, and then flush it down the toilet. The fluid starts our pink because it might have a tiny amount of blood. Dr. T. Best told me that it only takes a tiny drop of blood to made the fluid pink. By the end, the fluid turns yellowish. Isn't this lovely?! My friend, Nurse O. Canada said that she will help me with the drains, and I am going to hold her to it! Yuck! Gross!

Yesterday I said something weird to Molly. She has terrible asthma right now, so I told her, "Take your inhaler so we can control your cancer." What the heck?! I am such a knucklehead. I quickly corrected myself. I think that she is having the toughest time of all of us with the cancer, oops breast cancer, and that her asthma might be triggered by the stress. (Stress has triggered my asthma at times too.)

Today I got pink spikey hair! I really like it, although I look like an aging rocker. The pink doesn't totally stand out and somewhat blends with my normal, reddish hair, unless you look closely in the light. It's subtle, just like me! Riley thinks it's cool because some of her friends told her that if her mom gets pink hair, she will have the coolest mom in Manchester. Molly is not too keen on it. She asked me today how long it will take to grow back. She might have a tough time with this bald thing in a few months. I will have Riley take a picture of my hair and post it later this week. Thank goodness she is taking photography in school this semester and becoming proficient in Photoshop! She said that she can make me look better than ever!

I left off some stories of plastic surgeon, Dr. Chief, that Chubba thinks I should share... When Dr. Chief first came into the examining room and sat down, he said, "Tell me your story." I responded, "What do you want me to tell you?" He said, "Just tell me your story." Soooooooo, I started my story with, "I was born a poor bl-" pause, he finished the sentence, "black child....Steve Martin." I replied, "Then you know the story." It was nice to know that Dr. Chief had a sense of humor, and that he saw the Steve Marin movie. He said one other thing that greatly impressed me; he referred to his assistant- (not sure if she is even a nurse) as "my associate." By calling her his associate, he put her on equal footing. Boy, talk about checking your ego at the door!

Tomorrow I have day surgery to remove a chunk of my right breast. Dr. T. Best is looking for any sign of microscopic cancer cells. The surgery is at 12:45 p.m., but I have to be there at 7:30a.m.. What am I going to do for 5 hours before surgery? I know I have to get drugged up, but for 5 hours! I guess I'll start a new book or knit. The surgery will only take about an hour. I will recoup for a couple of hours, and then go home. The information sheet in my cancer binder states that it takes 7-10 days to get the results from the biopsy. I am guessing that Dr. T. Best has some power and will speed up that process. If it comes back negative, then May 18 stands as the surgery date. If is comes back positive, then I'm not sure if the date will change or we can stay on schedule.

Whacky thought for the day...
I was thinking of writing on my right breast, "Biopsy me!" so they get he correct side.

Free Books, And More...

On Tuesday I arrived at Mass General 1 hr 45 min early for my appointment with the plastic surgeon, Dr. Chief. I was at the mercy of the train schedule, so I had extra time to spend at the hospital. I decided to visit the cancer resource center, located one floor below the breast cancer center, to look for guidance on how to help Riley and Molly through my cancer. (Last week was a difficult week for the girls. An adult made an insensitive cancer-related comment to one daughter, and the other found herself in an uncomfortable situation due to my doctor's appointment.) The resource center reminded me of a combination of a small study hall in college, and counselor's office, and an United Red Carpet room. To the right was a bank of about 6 desktop computers. To the left was a wall of bookshelves loaded with books relating to all types of cancer. They are coded on the binding, making it easy to find a book related to your particular cancer. Breast cancer is a red triangle - just in case you are in the area and drop in. In the center were two more sets of shelves filled with pamphlets/booklets on specific topics related to cancer. Several cushioned chairs were spread throughout with a few tables. And of course, there is the 1,000 piece puzzle on a table. I wonder if puzzles are supposed to be relaxing. At one corner sat two La-Z-Boy recliner-type chairs. I could never have one of these in my home, however, they did look very comfortable and inviting. (My mom always said, "Never say never." I think it is safe to say never in this case.) I will even admit that when I visit the resource center the next time, I might even plop my La-Z-Butt in that La-Z-Boy recliner, as long as there are no pictures for evidence. Coffee, tea and water were also available for self-serve.

As I was looking through the books about kids coping with mom's cancer, a very nice woman approached me and offered her assistance. When I explained what I was looking for in the bookcase, she said that she has some books in back, and to have a seat. She walked out with a large package of information. She gave me three books, not to borrow, but to keep. One book is titled, "The Blue Day Book For Kids," by Bradley Greive. I wholeheartedly recommend this book to parents for children of all ages, to be used on those days when your child comes home after a bad day at school. It uses photographs of animals to acknowledge the crummy feelings, but by the end the book your child can't help but smile.

The second book is a national bestseller, "Ida B," by Katherine Hannigan. It is written from the perspective of a 9 year old girl who's mother has cancer. (It does not tell what type of cancer.) Ida must go through a lot of changes in her life while they are dealing with her mom's cancer. It has a happy ending. I am going to read this aloud to both girls together. Molly, 9, enjoys when I read chapter books to her, and Riley always sneaks in to listen too.

The last book is for Justin and me, "Raising An Emotionally Healthy Child When A Parent Is Sick." The little that I have read has been helpful. As I have written several times, my biggest concern during this cancer ordeal is how it is affecting the girls. This is why the two situations last week were such a tremendous blow to me. I know the girls are strong, and put on a good front, but they are children. I think that often people forget that children are children. At least, my children are still children, and don't pretend to be older or wiser beyond their years. (Also, I refuse to let them get too big for their britches.)

The caring woman gave me two journals with a matching pen for the girls to write down their thoughts. Molly has gone to town in her book, filling several pages. I am curious to see what she has written, assuming she gives me permission to read it. She also gave me a little booklet written for teens on dealing with their parent's cancer. I didn't read it, but I saw Riley going through it.

At the resouce center I picked up some pamphlets on a variety of topics: chemotherapy, mastectomy surgery, biopsy surgery, etc...real page-turners!

It is through generous donations that resources centers like this exist. Thank you everyone who donated to make it possible!


Happy Anniversary Mor & Smurf, aka Mom & Dad - 53 blissful years! - 7 Children (7 bachelor degrees, 4 masters, 1 Ph.D), 11 Grandchildren, and 1 Great Grandchild in the oven!

Out The Window...

I always considered myself a modest person. I try to never show cleavage, which unfortunately is a lot of cleavage to hide. I know, those that have it don't want it, and those that don't have it want it. Having breast cancer has thrown modesty right out the window. Last Thursday I had five different doctors give me a breast exam. By the fifth person, I felt like saying, "Alright already!" Yesterday, I had an appointment with a plastic surgeon, Dr. Chief. (He is the head of the plastic & reconstructive surgery department.) (There are no lightweights on my medical team!) Anyway, at first I had to undress, except for my panties and have pictures taken of my stomach and chest by the assistant. The first thought going through my head was "I wish I wore prettier underwear." No, they didn't get my face in the photos, and I deny that they are not pictures of me! Then after a long discussion with Dr. Chief about the different options available for reconstruction, he looked at me sans clothes, with his assistant in the room, to show me how reconstruction would look. If I had a modicum of modesty left, it shattered the window on the way out! He grabbed my belly and agreed that there was enough fat to make a breast. Great for one's self esteem. However, during our long discussion, he did call me YOUNG a couple of times. If you hear that from a plastic surgeon, it must be true.

There are two options for reconstruction, implants or a tram flap. The tram flap, which I call "trans fat", tunnels the fat from you belly up to your chest to make a breast. I think it should be called "trans fat" because you are transferring fat from your belly to your chest. (I tend to call a spade a spade - if you haven't already noticed.) Basically, you get a tummy tuck and boob job all at once. I think he said that he has been doing these procedures for 7 years. The benefit is that you are using your own tissue to make a new breast, leaving no chance of rejection, unlike a man-made device, an implant, that does have a risk of rejection. However, the recovery time is longer, and the stomach muscles are compromised - so no more sit-ups...so much for those 200 I do every morning. I guess if I actually did the 200 sit-ups every morning, the tram flap, or trans fat, would not be possible. The silicone implants are the same as always. The only hitch is that if I have to do radiation, there is a 50% failure rate in the implants. Not good odds. If this happens, he can replace the implant with another implant or do a tram flap after radiation is completed. Radiation can also affect the tram flap by reducing the size, but the chances are much lower than 50%. Decisions, decisions. What kind of boob do I want? It is difficult to think that this is even a decision process. It seems somewhat silly to me with all that's going on in our lives and the world. I am leaning toward the tram flap.

Monday is the day surgery biopsy. If it shows cancer in the right breast too, and a double mastecomy is needed, then decision regarding reconstruction changes. I do not have enough fat for two breasts. Good news, bad news. or Bad news, good news. With double implants, I will be like every other Californian!... okay, not all women in California, only half the women in California...well, not quite half, but many.

I liked Dr. Chief. He seemed very bright and appears to be on the cutting edge of technology, but he also has a relaxed and approachable demeanor. He the first doctor to print his e-mail address on his business card. He told me to e-mail him if I have any questions or concerns. I have 15 cards from doctors in my cancer binder, and Dr. Chief's card is the only one with an e-mail address. He received a cell phone call during our meeting, and apologized for needing to take the call. I thought, okay, he is probably arranging for Red Sox tickets. But after he told the caller that he needed to call back because he was with a patient, he explained that the person was head of the group funding his lab. You never ignore the money people! I'm not sure if I mentioned this before, Mass General is a research and teaching hospital affiliated with Harvard Medical School.

Whacky thought for the day...

Why is menopause called menopause? (I haven't experienced this wonderful rite of passage yet.) Shouldn't it be called womanopause, periodopause or nomoreopause? I think it is called menopause because it is a warning for all men when questioning a woman going through it...danger: men, pause before you speak.

All Wigged Out...

For the life in me, I do not know why I was so wigged out the night before my Mass General appointment. It was only an appointment! It's not like I was going to receive any bad news that I didn't already know. I was a bundle of nerves - not the good kind like the first day of school or Christmas Eve, more like the dreaded sales meeting or (business) road trip. As I mentioned before, I only slept 3 hours - what a head case I was!

Mass General in Boston is so large that it has its own police force. When we arrived, there were Mass General policemen all over. We thought someone of importance must be arriving, but then we realized it was just to handle the incredibly large volume of people. We went into the wrong building, and had to walk around the corner to another building. This place is massive!

The cancer center takes up three floors. The breast cancer's doctors' offices are located just past the breast cancer boutique that sells hats, scarves, wigs, specialty bras, specialty swimsuits, and clothes. We arrived at 9:30 for a 10:00 appointment. Unlike a restaurant where you might get in early, we sat in the waiting room until 10:45. At all my other appointments I read a book. For some reason, I could not read. I almost felt frozen in my seat. The waiting room was nicely decorated with interesting art on the walls. Two large portraits were made completely from buttons. The carpet was interesting; it looked like a handknit sweater using slubby yarn. One wall was all glass that looked onto the corridor and outside. A 1,000 piece puzzle was sitting in pieces on a table, waiting for someone to put it together. During our time in the waiting room I saw at least 8 different people give the puzzle a try, but didn't see too much progress.

Speaking of wigged out, during the 1 hour & 15 minutes in the waiting room, besides critiquing the decor, I passed the time in my mannequin-like state watching people come and go. I tried to figure out who was wearing a wig and who wasn't. I know, strange. (All along, I have told everyone that even though insurance covers the cost of a wig ($250-$thousands), I am not going to wear one. I am strictly a baseball cap and scarf girl. I saw two bald women in baseball caps, and they looked great.) I think I could discern between a "good" wig and a less expensive wig. The cheaper wigs have a very blunt, stiff look to the end of the hair that makes it look the hair on a doll. It also doesn't seem to move much. One woman who was young, thin and dressed well, had a very nice long wig. I could barely tell it was a wig until I saw the back and it was separated just a little bit. This must have cost her some big $$$. She looked great. Now, you should know that I wasn't glaring at everyone like a whack job, just my own clinical observations. Seeing the average age in the waiting area, I know why I was called YOUNG by the doctors. One woman was telling a tech that she just turned 90. She was full of spunk, looked fabulous, and was there all by herself. You go girl!

Dr. T. Best, formerly known as Dr. Top Dog, spoke to us at length about reconstruction. (I just don't think the name Top Dog fits after meeting her. T stands for Thee.) She is advocating for reconstruction at the same time as sugery because she can save the skin during surgery, making for more natural. During surgery she makes an incision straight down the side from the middle, removing the center - nipple and all. (I'm getting a little embarrassed, but in the spirit of educating, I will continue.) It sounds like there will be very little scar tissue, and will look very normal, other than it is all white. A very small area about the width of a finger will be numb, and remain that way forever. She said that after a while the body adjusts, women don't even notice the numbness. A plastic surgeon will perform the reconstruction and work along side Dr. T. Best. Dr. T Best said that she has some favorite plastic surgeons, and that she will set me up with one. I have an appointment on Tuesday to meet the surgeon. There are a couple of different techniques for reconstruction, and I am curious to hear what the plastic surgeon says. I know that one version is a silicone implant and the other has something to do with tunneling your stomach fat under the skin, up to the chest. You get a two-for-one: a tummy tuck and new boob all at the same time. More about this later next week.

A genetic counselor came in to speak with us too on Thursday. She has the results from the BRCA 1 & 2 tests, but she said that there is one more test that most medical people outside the research field are unaware of right now. The BRCA1&2 tests are 85% accurate for screening a genetic mutation that leads to breast and ovarian cancer. A new test has been developed that will make up 14% of the uncertainty, resulting in a 99% accuracy. Fortunately, the the same lab that performed the BRCA screen will also perform this screen, and they can use the bloods samples from the previous screen. I only had to sign a piece of paper for the test to be done. Easy.

Mass General is a teaching and research hospital. I signed up for one study that only involves answering a questionnaire on an electronic tablet each time I come in for an appointment. I also agreed to another study regarding fatigue and radiation therapy that involved blood tests and questionnaires, but then I discovered that I would be required to have treatments in Boston. Since I am going to have radiation (if needed) in Danvers, I cannot participate in the research. I think there is one more study, but I can't remember. Maybe it was a study on how stress affects memory!

I had my arms measured by an infrared machine. Several measurements will be taken throughout the course of treatments. I think this has something to do with lymphedema, a swelling in the arms that can be a side affect of a mastectomy. I asked the tech if anyone's arms ever get longer. She said that everyone asks that question, and she hasn't seen it yet.

About 3/4 the way through the 7 hours of appointments an LPN which is the same as a LVN on the west coast, came in and offered us snacks and water or juice. Nurse Flo Nightingale also brought a packet of information on resources available to cancer patients. The floor below has a lounge and resource library for cancer patients. Books can be borrowed from this library. Also enclosed was a calendar listing wellness services, education workshops and support groups that meet in the lounge and meeting rooms. Some of the services listed on the calendar were stress and anxiety management, knitting hour, relaxation through meditation, chemotherapy-what you should know, and many more. Nurse Flo gave me a booklet to help children cope with their mother's cancer, oops, breast cancer. The booklet lists the phone number of the children's psychiatry department that will answer any questions and offer assistance. Nurse Flo had a great spirit and personality. She is the right person for this job.

The best part of the day was making it home in time to take Molly to soccer practice in Essex. She had a game today, and scored her first goal!

Whacky thought for the day...
I am afraid that I am becoming nocturnal because I sleep more soundly during the day than I do at night.

Shout out...thank you Bubble Wrap for taking Molly last night at the last minute so that Chubba and I could go out - a very rare treat! You're the greatest!

Do You Believe...

If someone tells you something enough times, do you begin to believe it? Yesterday, at Mass General, five different doctors told me I was YOUNG and Healthy about 25 times! I was hesitant to ask at what age would I no longer be considered YOUNG -because I was afraid it was 50, and I'm knocking on 50's door! Being called YOUNG so many times in one day, and by people who would definitely know the definition of YOUNG, gave me an extra little skip in my step when I left the hospital after 7 hours of appointments and intermittent waiting.

Going to Gillette Breast Center at Mass General Hospital was like going from the minor leagues to a big league/World Championship team! This is not a slight at my previous doctors - after all, the minor league players are darn good ball players.

I met with 5 doctors, a genetic specialist, a LPN - aka LVN, research managers, and a tech that measured my arms. Every single person asked us questions about our family, how many children, their ages, gender, how they are doing, and what type of work we do. They were genuinely interested in us as people dealing with an awful disease, and not just patients going through a procedure. Not one person showed any sign of arrogance or complacency. I think that when you are confident in what you do, you do not need to tell the world how great you think you are. The other interesting observation is that every person seemed to really enjoy what they do, making a cancer center a positive environment. Doesn't that seem like an oxymoron - cancer center/positive environment?

My new surgeon, Dr. Top Dog, is an amazingly smart woman, and would you believe, that she's beautiful too? Don't you just feel sorry for women like this? Last year she performed 530 mastectomies, and 80% of these women underwent reconstruction at the same time. (How does one person do that many surgeries that are 3-6 hours long, meet with patients, keep up with the endless paperwork, and have a life?) Dr. Top Dog explained to us, in a way that we had not heard previously, my type of breast cancer - lobular breast cancer, the surgery procedure - incisions & length of surgery, recovery expectations, drains, reasons for undergoing reconstruction at the same time, and the risks involved. Her explanation how the lymph nodes are involved was very different from my previous surgeon, Dr. No Nickname. This was an unsettling revelation. This was also the first time the risks related to surgery were explained to me: skin tear, bleeding, infection and blood clot.

Lobular breast cancer is a microscopic cancer that doesn't easily read on mammograms. It is a strange cancer because it can grow (not spread) rapidly. This rapid growth helps explain how a cancerous golf ball landed in my left breast seemingly overnight.

Dr. Top Dog wants to do a day surgery biopsy on the right side on April 26. She will remove a large sample surrounding the biopsy on the right side. She wants to make sure that no microscopic cancer cells are hiding in this breast.

The tentative surgery date is May 18 - two days before Riley and my mom's birthday. I feel bad for Riley because birthdays are very special in our home. (My mom always made them special for us growing up.) And with all the crap that she has been through with "friends," and all the help she has given us with Molly during the plethora of appointments, she deserves a great 15th birthday. (She is excluded from another party with her group of friends, scheduled for this weekend.) However, she is not complaining about the surgery date. The surgery date may change if the biopsy comes back positive for cancer because they will need more time scheduled for the operating room.

We really enjoyed meeting the medical oncologists, especially because they called me YOUNG many times. Chubba told them about my blog, and that I give everyone nicknames. They seemed interested in reading this babble; so just in case, I better give them interesting nicknames. My previous oncologists were Dr. Ice Milk and Dr. Vanilla Bean. These two women are much more interesting than vanilla! This first oncologist, Dr. Hot Fudge appeared to be very young, and is from Pennsylvania - the home of Hershey chocolate. The more senior oncologist, Dr. Banana Split, is also younger than me and has two young boys, so she must sometimes feel split between work and home. We working moms could all wear the title Banana Split! Drs. Hot Fudge and Banana Split explained that I will have chemotherapy for 3-6 months following the surgery. The length and type of chemo cocktail will depend on the involvement of the lymph nodes and the pathology report of the tumor/golf ball. The treatments will begin approximately 4 weeks after surgery. They also said that I will take a cancer drug, Tamoxifen for 5 years.

The last two doctors were radiation oncologists, and came in at separate times. The first one was clearly junior to the other. Dr. Junior explained that the need and length of radiation is not known until after surgery because they need to know if the lymph nodes are involved and the pathology report of the tumor. After we spoke a bit, there was a knock on the door, and someone said, "conference." The five doctors met to discuss my case and course of treatment. We met the senior radiologist after the conference. He explained the radiation treatment in depth. Dr. Senior explained that fatigue is a major side affect of radiation. I can't imagine being more tired that I am right now. (Maybe this is due to the fact that I slept only 5 hours on Tues. night and 3 hours on Wed night.) Radiation begins about a month after chemotherapy ends. He said that they give the patients and month "off" between treatments as a break from appointments. Because radiation is every day, M-F, for 6 weeks, I told Dr. Senior that I will be having my radiation treatments at Mass General's satellite hospital in Danvers. He said that he will determine the course of treatment, and then turn it over to a radiologist in Danvers. Drs. Junior and Senior will not be my radiologists after the treatment because they stay in Boston. Dr. Senior also confirmed that the conference determined that I will undergo a single mastectomy with chemo, and that the biopsy on April 26th will dictate if more is needed.

Next blog: the waiting room, wig inspections, more genetic testing, arm measurements, research, reconstruction, and resource library.

Whacky thought for the day...
I am thinking of cutting my hair very short, so when I am in the hospital I don't have terrible bed head, and it is easier to deal with when it falls out from chemotherapy. (It is currently an angled bob.) Also, I am thinking of putting some pink (for breast cancer pink) streaks or highlights in it! This would be the only time in my life I could get away with pink hair, plus this is what the YOUNG people are doing! Chubba thinks I'm crazy.

Tomorrow is C-Day...

I figure that operation day is D-Day, so the "big" day before D-day is C-day. I am meeting with my new set of doctors at Mass General tomorrow. To say I am a little unsettled is an understatement. Today I was up at 4:00 a.m. cleaning walls, under the kitchen sink, base board, cupboards, any other noiseless cleaning. And, I am definitely NOT a morning person! You would think I was nesting and ready to have a baby! I even had the morning sickness nausea. At this point, having a baby would be easier. No , wait, check that; at my age, having breasts removed is easier.

Yesterday I went shopping for a dress and shoes for Riley's school concert. Yes, I know, shocking that a teenager might wear something that her mom picks out. Actually, to Riley's shock, I did well. Anyway, I squeezed in a few minutes for me and went to Nordstom's lingerie dept looking for an alternative to the hospital muumuu, aka Johnny. Still, I don't understand that name Johnny for something that can only be described as a wardrobe malfunction. (I also went to Victoria's secret, but only found garments appropriate if I was increasing my breasts, not reducing them!) I couldn't find anything at Nordstrom that would work, but out of curiosity, I started talking to the saleswoman about prosthetics and bras because I had read somewhere that Nordstom works with women going through beast cancer. I learned that Nordstrom even bills most insurance companies directly for this stuff, but of course, not my insurance, Blue Cross. Nordstrom has someone in each store that is certified in prothesis fitting. The certified fitter and the saleswoman in training for cerification took me into a fitting room to show me all the stuff. It is quite interesting. Nordstrom carries a special bra and camisole to wear after surgery with removable pockets for drain tubes. They are made of soft cotton so that they don't aggravate the incisions, and designed so that you either step into them or snap front because you don't want to lift your arms. After surgery, the range of motion is limited. They have two pockets in the cups when you can instert little pillows called "poofs." I kind of chuckled when I saw them because they reminded me of something Molly would put under her shirt and prance around house, inciting laughter from all in view. (You might be wondering about the drain tubes...not so sure myself, makes me kind of queezy, but will find out more tomorrow.) She even showed me some prosthetics that looked a little, not sure of the right word, strange and interesting - it looks like a fake boob that you wear next to the skin, under a bra. Yikes, do I really want to go there? This was quite a learning experience, and I was very impressed with the women and lingerie department at Nordstrom!

Riley asked me today if I am excited about tomorrow. I think that I am more eager than excited. I have been in a holdng pattern for 4 weeks. I am ready to move forward, but am bit nervous at the same time.

Stay tuned...it's just getting good.

Measure Twice, Cut Once...

I love the builder/craftsman's axiom "measure twice, cut once." I learned this from Norm Abram's New Yankee Workshop. Yes, I have watched that show occasionally, but I have not built anything...yet! I appreciate the percision and pride that craftsmen and craftswomen put into their work.

My first request for records was on April 1st. Today is April 12th ,and I finally received my last report via fax this morning. I made at least 20 phone calls, faxed three record release requests, and drove to two locations to gather reports, films and disks. I thought that everything could be sent electronically because doctors within Bev. Hospital system has access to everything electronically, but no. The other oddity was that the records people seemed a little deffensive, like I was asking them to give me copies of top secret information. Since I pay for the tests, don't I own them?

Last week I drove all over the North Shore, picking up medical reports, disks and films. My last stop was Beverly Hospital in Danvers where the majority of the "stuff" was located. After I was handed a large, official looking envelope from the reception desk, I decided to sit at a table in their little cafe and check the contents against my checklist. Guess what? The ultrasounds, the bone scan and the CT scan were missing. When I went back to the receptionist, a 60 year old woman right out of a sitcom - the clothes, the hair, the make-up, the nails, the perfume, the heavy accent, and told her that I was missing some disks, she handed me the phone to call Ms. Perfect, the woman in charge of records. Ms. Perfect walked out of her office and over to me as if she was going somewhere with a definite purpose. She pointed to the two enclosed disks and said that all the information is on them. I very nicely - which is not always easy when you are donkey hanging over the edge - explained that the labels on the two disks read, "MRI" and "MRI Biopsy." She told me to wait a minute, and returned with two more disks that read "Ultrasound" and "CT Scan and Bone Scan." She apologized and said that she has never made this mistake before and that she had to run to take her daughter to an appointment.

It's a good thing that Ms. Perfect works in the medical field and not the building business. Or is it?

Whacky thought for the day...
Why is it so hard admit when we make a mistake? I find people who make a mistake and own up to it are much more intelligent and capable than those those that make a mistake and hide it.

Removing A Band-Aid...

There are two ways to remove a band-aid: you can pull it off quickly, all at once="OUCH!" or, you can test your sanity and pull it off millimeter by millemeter with an intermission="ouch, ouch, ouch, ouch, ouch, pause and breathe, ouch, ouch, ouch, ouch, ouch!"

I like to get painful situtations over quickly and move on. My kids rarely ask me to help them remove a band-aid. When I was first diagnosed with breast cancer, I though it was going to be a quick process without too much time to think about it. However, the myriad of tests proved to be the left side of the band-aid, the pause in the middle is much longer than I anticipated, and I am hoping April 15 will be the beginning of a quick yank of the right side.

I have only one week until my appointment at Mass General, but it feels like a week in dog years.

My nerve endings feel like they are right at the surface. Someone should borrow a sign from the zoo and put it on my back, "Warning: turtle may snap at any time." I confided in my neighbor, Mary, that "I am a donkey no longer on the edge, but with at least two hoofs over the edge." She said that I definitely have and edge to me now. I feel like I have more edges than a set of levelor blinds. Oh great, I have reduced myself to a cheap, but effective, window covering from Home Depot. Two nights ago Riley asked me, "Mom, would you have a drink, and hit it hard?" "Hit it hard" translates to skip the occasional Shipyard beer and move to one of the clear bottles in the cabinet above the refrigerator, aka vodka. Unfortunately, I finished the vodka a few nights prior - there was just a little left- no need for rehab after this week. I know. No fun.

Whacky thought of the day...
I have been thinking about this reconstructive thing, and a few whacky thoughts come to my mind: When women get very old - late 80's - gravity does unpleasant things with out breasts...they end up resting on our belts or waistbands. The waistband then becomes a supportive device. So, if you have reconstructive surgery, will the breasts be the only part of the body defying gravity? Will the chin then end up resting on your chest?

My niece saw this on a t-shirt: "Yes, they are fake. The original ones tried to kill me!"

No Date Update...

I still do not have a date for surgery. I am meeting with my new surgeon, radiologist, oncologist and pathologist at Mass General on April 15. I am guessing and hoping that they will schedule the surgery for the following week, which is also spring break for our local schools. My current surgeon Dr. No Nickname said that Mass General could possibly scheudle the surgery for the following day. If it is during spring break, Justin and the girls are going to stay at a hotel in Boston for a couple of days while I am in the hospital. I am not sure how many days I will be in the hosptial because I still need to book a reservation. I wonder if I can get a better rate on Expedia.com. The girls are actually looking foward to going to Boston and hanging out in a hotel, taking the T(subway) to the museums, maybe a little shopping, dining out, possibly see a show, and swimming in the hotel pool. Oh, and hopefully they will find time to visit me. Boston is a fun town to visit and easy to move around on the subway. I have not mastered driving in Boston yet, the streets go every which way, and most are a one-way going in the wrong direction - it makes driving in San Francisco look like a drive through Mayberry.

This week I am gathering all my records, slides, films and disks to send to Mass General. In the recent weeks I had 2 nuclear scans, 1 CT scan, 3 mammograms, 4 ultrasounds, 3 biopsies, 2 MRIs, and a partridge in a pear tree.

Whacky thought for the day...
Why is it everytime I have an appointment to get my teeth cleaned I floss religiously for the week before the cleaning and the week after the cleaning? The rest of the time - sporatically.

Happy Birthday Eric in the UK!

Not Cancer, Breast Cancer...

Everytime I say or mention that I have cancer, Riley or Molly correct me and say, "You don't have cancer, you have breast cancer!" To them it sounds less scary to have breast cancer than cancer. To me too. They probably feel this way because I explained to them that I can live without breasts, but cannot live without lungs, liver, a colon, etc. They know that breast cancer has a very high survival rate.

Recently we were at out local bookstore making Easter crafts/decorations for their window display. Three 5th grade girls came in and joined us. I know the girls because I substitute taught them at our local elementary school. (Substitute teaching is the most underpaid and underappreciated job - except of course for the more difficult ,underpaid and underappreciated job of a stay-home mother/father.) The girls commented on my pink ribbon earrings that Riley and Molly recently gave me for my birthday. One of the girls said that her aunt had breast cancer and is doing fine. I said that I did too, but it was nothing to worry about. Immediately, both Riley and Molly chimed in, "She's not going to die."

I feel their fear.
Clearly and natuarlly there is a level of fear that both Riley and Molly feel about the cancer, oops, breast cancer. They are acting so brave, but I can tell that their emotions are sitting a little closer to the surface. It must be difficult for them to worry about their mother all the time. I know I would feel the same way about my mom, and I'm an old lady that supposedly has coping skills. It would be scary to be 14-almost 15, and 9, and have a mom walking around with breast cancer. Last week while I was cleaning the house, I had "what if" thoughts that brought about non-stop tears. The tears were for Riley and Molly, not for me. I constantly worry about their worries - and that's a whole pile of worries. Maybe I should stop cleaning the house and then I won't have "what if" thoughts!

I feel their pain.
On top of anxiety of a "sick" mom, Riley has to deal with high school "friends." Last Friday a good friend in her large group of friends had a very fun party. About 20 kids met at the local sports field and broke up into teams for a scavenger hunt. They ran all over town - aka village -looking for clues. If you were downtown, you couldn't miss them. (Manchester is a tiny town of about 5,000 people where you can walk everywhere - town, school, beach, harbor, sports fields, etc.) There appeared to be only one girl from their group not invited - Riley. There is no logical reason for this exclusion, other than a girl that has bullied her for three years- both physically and emotionally - could have masterminded this hurtful situation. She was hurt beyond measure, absolutely crushed, and she said that she felt numb and "completely empty inside." Nothing sucks worse than mean and inconsiderate teenagers picking on the people least likely to fight back - the nice ones, especially when it is your child. (I guess it makes sense that they wouldn't pick on the tough ones. Bullies are cowards.) (Yes, I reported the bullying to the school this year, but they will not do anything until Riley puts in in writing - and I can't get her to do it.)

Things could be worse.
Do you ever say, "Things could be worse, I could..."? In the past I said, "Things could be worse, I could have cancer." which is the same as, "Things could be worse, my girls could be hurt by friends." Now I say, "Things could be worse, Justin could be fighting in Afghanistan," I know that he is way too old for the military - so this is safe.

Whacky thought for the day...
"Doing nothing is the most tiring of all, you can never stop to rest." - Harry's Donuts, Merced, CA

Happy Easter!
&
Christo Anesti!

Let's Make a Deal...

Behind Door Number 1:
A Mammogram!
The basic stand and squish mammogram is usually completely covered by insurance, with no out of pocket expense. It lasts only about 10 minutes, and will detect about 85% of all breast cancers. If you have lobular breast cancer, forget it, because it probably won't show up on a mammogram.

Behind Door Number 2:
An MRI!
The lay and hang MRI may not be completely covered by insurance, so there might be some out of pocket expense. It lasts about 22 minutes, and you must be injected with a dye solution. It will detect 100% of all breast cancers. You got cancer? MRI will show it.

Behind Door Number 3:
Procrastination!
Do you put off your exam, thinking, "No one has breast cancer in my family?" Do you say to yourself, "I can wait one more year." Do you want no out of pocket expenses? This is the door for you?

So what will it be?
Pick door number 2! Pick door number 2! Pick door number 2!

I would rather pay some out of pocket expense and spend and extra 20-30 minutes for an appointment to know with 100% accuracy whether or not I have breast cancer, than to be completely covered by insurance and get a report that is almost sure that breast cancer is not present.

I am still trying to understand why women get mammograms instead of MRIs. Even though my cancer is 3.2cm, about the size of a golf ball, it barely showed up on the mammogram in February. And, the three satellite cancers spots on the left, and the pre-cancer spot on the right did not show up at all on the mammogram. These four spots were detected on a MRI. I wonder if the large cancer tumor was a tiny spec 3 1/2 years ago when I had a mammogram, but was undetected.

I have some theories why we are still subjected to the squishing of the mammogram, vs the lay and hang of the MRI.

1. Insurance - oh, how I detest insurance companies - MRI is more expensive than a mammogram. Don't know why - maybe because the machine is gynormous and more expensive. It also takes about 15 minutes longer.

2. The MRI shows every little detail. If a tiny spec shows up, the radiologist must report it, and then someone must follow up on it. This could lead to a lot more biopsies. As one doctor said, you can have "too much information." What? Maybe too much ice cream, too much sunning, too much work, but never too much information when it comes to your health. Wait, scratch that, never too much ice cream.

3. Not enough MRI machines available, even though the MRI Breast Center at Bev Hospital in Danvers is closed on Fridays because they don't have enough business.

4. Doctors continue to recommend mammograms because that is the way it has always been done. Maybe they are not aware of the difference in detection.

I have learned that you must advocate for yourself! The doctors will not do this for you! I insisted that the right side lesion (detected on the MRI) be biopsied, even though I was told by both my surgeon and radiologist that it was "nothing" and a biopsy was "unnecessary." Guess what? It isn't nothing - it is pre-cancer! Because of this extra information, I am looking at a double mastectomy instead of single.

So ladies...make that appointment for Door Number 1 or Door Number 2!

Whacky thought of the day...
Have you ever tried cleaning the house while listening to opera music? Andrea Bocelli helped me clean that house and I found it quite pleasant and motivating.

Placed My Order...

When I go out to dinner ( on that rare occassion that doesn't involve pizza) I never relax until I place my order. I don't even fully enjoy the conversation until orders are placed because I'm listening with one ear, trying to read the menu without ignoring my companions, and in the meantime making the all important meal decision. Yes, I can multi-task, but dining out is a whole different ball of wax. I have even asked waiters to come back at 3-4 times. I am sure that I made many people feel like a waiter by turning you away, (...recent blog regarding recommendations, suggestions and input overload) I finally placed my order! I had all my tests, I have my team of doctors, know what surgery I am having, where I'm having it, but date is still tbd. I am relaxed and ready to enjoy this unusual meal together. So let's talk cancer, or not. I can't wait for dessert - I'll have one of each with lots of spoons!

Have you ever eaten dinner on a seasaw?

Whacky thought of the day...
What is the difference between an auto mechanic and a surgeon?
Clean hands
(No disrespect meant to either auto mechanics nor surgeons.)

Downhill is Harder...

If you have ever been backpacking, you know that walking with a loaded backpack downhill is much harder than trekking uphill. This doesn't make sense, and it's really quite a bummer when you reach the top of the mountain, thinking that the descent into the lake is going to be easy, but discover that it is even harder. I just carried my cancer to the top of the mountain, and am beginning my descent.

The discovery, the tests, and the myriad of doctors were my uphill climb. The final decisions regarding surgery and reconstruction are the descent. Oh yeh, and then there's that chemo thing.

Today Justin and I met with my local surgeon, Dr. No Nickname. Yes, we are going to Mass General for a second opinion, but I wanted to get the results from the MRI biopsy and hear her options for the operation. I learned that the MRI biopsy of the right side - noncancerous side - came back not cancerous, BUT not good either. The lesion needs to be removed. Now I have the weight of the big, really BIG decisions to consider. What type of surgery do I want, and do I want reconstruction or do I want to wear falsies - not the technical term. I can just see it now - I'll be bodysurfing a wave, get thrown around and lose my boob in the surf. Some kids get to look for shells or sea glass, but mine will be searching for their mom's left breast.
She gave me three options:
Option 1. Step A. Complete mastectomy on the left. Step B. Chemotherapy Step C. Complete mastectomy on the right and reconstruct both during the second surgery.
Option 2. Remove both and reconstruct both at the same time
Option 3. Step A. Remove left and part of right. Step B. Reconstruction operation at another time, or no reconstruction at all

I told Dr. No Nickname that I thought it wise to get a second opinion. She was good with this decision. She knows of Dr. Top Dog at Mass General that I am seeing on April 15.

Another element was thrown into the equation today. If I decided to stay with Dr. No Nickname, she is going on maternity leave around the third week in April. What? She can't be pregnant! She had triplets (3 boys) in January - she looks amazing-no belly and no bags under the eyes! Does this sound familiar Super Mom? She is still going to work part-time. If I have complications, I think it might be better to have someone that is full-time.

I am very thankful that I have so many people who are thinking about me and are expressing their concerns and desire to help! I appreciate all the suggestions and recommendations.

The other part of the descent that is weighing heavily on me - I don't know how to say this without sounding unappreciative and bitchy - is that it is difficult when so many people call or stop me "on the street" to get updated on my progress; this is why I began the blog in the first place. I just didn't think that I could talk about my breast cancer over and over and over, and I was right. But I guess many can't get into the blog thing - I can totally understand -I barely have time to check my e-mail, let alone someone's ramblings about her cancer. Unfortunately, for me, retelling my progress/process is strangely exhausting. But, why am I telling you this?! You are actually reading this and know what's going on! How goofy.

The last weight in this cancer backpack- and I don't know how to put this either -is the barrage of outside input. As I mentioned above, suggestions and recommendations are welcomed and appreciated, but in the form of an e-mail is best at this point. I feel bad when I don't follow up on all the phone calls, suggestions and recommendations- it's not that I don't value all of them; it just has become overwhelming. Justin and I have reached the top of the mountain, and we feel pretty good about the path we mapped down to the lake. I know that those who have taken the breast cancer jouney can probably describe this unexpected feeling and energy drain more eloquently than I.

Whacky thought for the day...
If doing something the same way over and over but expecting different results is the definition of insanity...how many of us have been insane at least once in our life?

Happy Day-After-Your-Birthday Mully! (Sorry I'm a day late, but I didn't write yesterday.)

The Books...

I have avoided all books, pamphletts or handouts regarding breast cancer. The facts Mam, just the facts are all I am interested in reading. I can completely understand if someone is an emotional wreck after they are diagosed with cancer, and pray that they can find help and support. However, a book like the one I skimmed through today would make someone a worse wreck.

After church today, I started to read a book about coping with breast cancer. The forward by Evelyn Lauder,of Estee Lauder, was interesting. I'm glad that I use Estee Lauder products because Evelyn Lauder is a HUGE supporter of breast cancer research. She founded the Breast Cancer Research Foundation. Her goal is to raise enough money, and become so successful that it puts them - the BCRF - out of business. I like this attitude. After the forward, I am finding the content questionable.

The book was written by two successful, professional women. One is childless and completely self absorbed. It is enough to make you puke. At one point she writes, "Instead of fighting to get on the list for the latest Chanel bag, I was gearing up for the fight of my life." Really, this is a direct quote from the book! How melodramatic can one be? She sounds like a character on a soap opera. Did she steal this line from a harlequin book?

The beginning ot the book goes on and on about their thoughts of death and dying. The other author, who is a mother of two, writes about thoughts of leaving her two children motherless. I can honestly say that I have not had these thoughts. This is not an option. Is it assumed that all women think of death when they are diagnosed with breast cancer? These are professional women - shouldn't they know that the majority of women survive breast cancer if it hasn't spread to the rest of their body? Melodramatic women are embarassing to those of us (women) with a grip. But damn it, they planted this ugly seed, but I refuse to water and fertilize it. See, this is why no one should read these stupid books!

Needless to say, I skipped several pages, especially when the self-absorbed woman was writing. How many times does someone need to read the poorly written rubbish she spews like these insightful tidbits: "I always look wonderful," "I am a fashionista," the "first thing I asked for out of surgery was lipstick because I wanted to look good when my husband saw me," blah, blah, blah. Does anyone out there in the universe find this helpful information for coping with breast cancer?

I jumped to chapter four about reconstruction. This is very complicated, interesting and technical. Fortunately, most of it was written by a physician. This chapter was very helpful, and I will reread it with a highlighter. (I skipped the areas respresenting the authors' personal feelings and experiences - my stomach couldn't take it.)

The next chapter is about chemotherapy - can't wait!

Whacky thought for the day...
Why is it the only time I cry is in church? Something about the words in some of the music hits me like a ton of bricks. It is so embarrassing! and we sit in the front of the church! Thank goodness for waterproof mascara! (Kiss Me by Bliss is absolutely the best mascara, and I have tried them all. I buy it as Sephora or on line....Keval's beauty tips for today.)

Extra Long......

Warning: This is an extra long post. Before reading this, you might want to visit the bathroom, pour yourself a cup of coffee, or even better, a glass of wine.

Last Wednesday - two days ago - I came to the difficult realization that I need to find a new surgeon. Several factors lead to this decision. 1. Communication from the team of doctors is not optimal. 2. The two doctors that surgeon Dr. No Nickname assembled for the team were both fired by me: Dr. Ice Milk and Dr. Oz. 3. My neighbors "Mary"& Biz kept saying that I didn't seem too thrilled when talking about my care. True. 4. My friend and personal chef, The Clean Machine, kept telling me that I sounded uncertain about my care. True. 5. The final kicker - my CGA - Cancer Guardian Angel, and surgical nurse, Nurse O. Canada, called Bev. Hospital (not her hospital) a few days before my original surgery date arranging for the top nurse to be assigned to my case....gotta love the "nurse network!" When Nurse O. Canada told the top nurse my name and the surgeon's name, the top nurse told her that she had never heard of Dr. No Nickname. ( She used Dr. No Nickname's real name.) What?! A top surgical nurse at the hospital had never heard of the surgeon who is to be slicing and dicing my chest! Nurse O. Canada said that this doesn't necessarily indicate that she is not a good surgeon, and that possibly Dr. No Nickname is new to the North Shore.

I now have an appointment with Dr. Top Dog at Mass General Hospital Cancer Center. This woman is the director of the breast program for the Cancer Center. Thank you Realty Czar for this lead. The only bummer is that I can't get into see her until April 15. She is away for two weeks between now and April 15, so this is the earliest available appointment. I figured that I can wait a couple of weeks to get The Best breast surgeon in New England. I was asked by another friend, Wild Kingdom, if I can handle the stress of waiting, and I said that I believe there is enough alcohol in this area to keep me going...kind of funny because I drink so little. However, I do know of a decent chocolate store nearby!

Moving on to yesterday...
Yesterday I had an MRI Biopsy on the "cancer-free" right, by a different radiologist, Dr. Been There. She told me that she also had breast cancer a few years ago, and had been through all the same "stuff." Boy, if I look as good as she does on the other end, this will be better than any makeover! An MRI biopsy is pretty intense. I had to lie perfectly still, absolutely motionless, for almost an hour with my arms stretched over my head, face down, with my chin and forehead "resting" on a semi-soft/semi-firm surface. A grid is placed up against the spot to be biopsied, and then I am slid into the MRI machine for pictures to find the exact spot to be biopsied, the one that could not be seen on an ultrasound. (Unfortuantely this was done twice because the first position wasn't optimal, and I had to be repositioned on the table for a second set of pictures.) Using these pictures and the grid, Dr. Been There inserts a cathether-type needle into the site. I was slid back into the machine for a third set of pictures to make sure that the needle is in the correct location for the sampling. After verification, Dr. Been There very quickly took several samples of the mystery spot in my right side. Dr. Been There warned me that the sound when she takes samples will sound like a sewing machine. Little does she know that I sew, and this didn't quite sound like my sewing machine, the one I received for my 16th birthday! It sounded more like a drill , which I also own - cordless Ryobi- and use more than my sewing machine. I suppose saying that something taking chunks out of your breast sounds like a sewing machine sounds better than saying it sounds like a power drill. When I sat up after the hour-long procedure, I felt like I had a hangover, but without the benefit of a party, and much more expensive.

This biopsy required a larger needle than ultrasound biopsies, and therefore had more blood, more bruising, and more pain. It wasn't a walk in the park, but not totally unbearable.

I also learned yesterday that the samples of the satellite spots on the left side, located away from the golf ball - aka cancer - came back positive for cancer. This means that the left side is a complete mastectomy. If I have reconstruction this could mean that I will have one saggy and one perky. I will look like I had a stroke and one side is sagging, or that I am always signalling to turn left. Riley said that I will have to have all my pictures taken from my "good side."

The cherry on the sundae, hot fudge over Brigham's vanilla with whipped cream and nuts, was Molly almost getting hit by a car as we were walking home from school. Actually, I don't like cherries. As Riley,Molly, my neighbor and I were walking in the crosswalk at the corner of my street , Riley and I were on one end of the crosswalk, Molly and my neighbor were on the other side of the crosswalk, a crazy woman raced her car between us, honked her horn and then yelled at my 9 year old neighbor. (Side note - I live across the street from the Sacred Heart Church Parking Lot. There is a Montessori school in the daylight basement of the rectory. The parents pick up the Montessori students in this parking lot. Yes, even though the Catholic Church is across the street, we still barely make it to mass on time.) This crazy woman was late for picking up her child a the school. My neighbors and I see this wreckless behavior all the time - they parents are running late so they use Burnham Lane as Daytona Speedway. When I confronted the woman she went berserk on me. She got so close to my face that she was spitting in my face - gross - I hope she doesn't have any disease - oh yeh, I already have cancer. Then...are you ready for this...the woman shoved me and then walked away! Yes, she assaulted me! AND, she managed to shove me right on the location of my biopsy! I was more than a little shocked. But, I did something pretty funny, I went up to her, flashed my breast and said, "See this? This is breast cancer and you just hit me right in my biopsy." Her response was, "Well then, you are just having a bad day." She aggravated the biopsy site causing it to bleed.

Think about it, if you were to ever assault someone, don't you think a parking lot behind God's house is the absolute wrong location? It would have been cool if it was a stormy day and lighting cracked just about this time. Clearly, this woman has never seen the inside of a church!

Later that evening, my biopsy kept bleeding, developed a sickening bruise, and increased in pain. I called Nurse O. Canada at 8:30 pm to ask if she could change my steri-strips. (Steri strips are modern day butterfly bandaids. My mom could have used a case of these when we were growing up, especially on Roco's chin.) After I whipped off my shirt in her kitchen, she looked at the site and recommended that I go to the emergency room. So, after retrieving my book from home, I drove myself to the emergency room. The ER Doc and Nurse were very nice. I explained that had an MRI biopsy and they were interested as to what the procedure entailed. They were also intereseted in my breast cancer. It was all very funny because I think they asked more questions about my cancer and other things than about the reason I came in the first place. I was a living example of something they studied. I explained how I discovered it, the size, the testing, etc. I let them feel the cancer lump, and got a "wow." I chuckled. After a change of steri-strips, an extra-long ice pack, and a few vicodin, I drove myself home.

Six weeks ago, I would have considered myself a modest person. After tons of people, poking, prodding, biopsying, and x-raying, modesty became a thing of the past. However, I'm not quite ready for the nude beaches!

Nothing Left...

I had a hellish day today.
MRI Biopsy in the morning, ER in the evening, plus a lot of stuff in between.
It's 11:00p.m. EST and I just go home from the ER. (My blog is on PST.)
I have nothing left for energy, so I'll write about this wonderous day tomorrow.
Plus, I just took a vicodin, so this might turn out whackier than normal.

Stay tuned...same blog, same person, same cancer...

Second Opinion...

If at first you don't suceed, try option number 2.

Today I contacted Dana Farber Cancer Institute in Boston. I am expecting a call within 24 hours to discuss my cancer and to schedule an appointment. I am looking for a second opinion, and a team that has the same sense of urgency as I. The thought of driving back and forth into Boston is daunting, but I feel like I am going nowhere fast with my current course.

I sent a letter via fax to Dr. No Nickname today. I expressed my frustration with the testing process, and my discontent with the MRI and Ultrasound center. I do not know if she received the fax because I did not receive a call from her.

An MRI technician called me today to confirm the appointment for Thursday. She told me that the MRI biopsy takes about a hour. She said that I must keep perfectly still on the MRI table for most of that hour. The orders are still for just the right side, even though I believe it will probably be for the left side.

This patient's patience are wearing thin.

My poor family is living with a "Donkey On The Edge!"

Bunched Panties...

There is a distinct difference between questioning someone's judgement, and asking questions in an attempt understand someone's thought process that resulted in a decision. Today, when I asked the radiologist, Dr. Oz, a question regarding the mutiple biopsies scheduled for this week, he got his panties all in a bunch!

Today I had an ultrasound biopsy to take samples of the three lesions on the left side. I asked Dr. Oz if is he was going to take samples from all three spots...smart and logical question, if I do say so. He said that he can only see one on the ultrasound, therfore he will only be taking samples from one. If this sample comes back negative, then I will need to schedule another MRI biospy on top of the one scheduled for Thrusday. I said ok.

Wait a minute! After he left the room, I asked the nurse, "Why don't we just go straight to the MRI and bypass the ultrasound?" She said, "The ultrasound is less uncomfortable for you." "Less uncomfortable???" What? Again, hellooooooooooo, shouldn't I be the one making the comfortable/uncomfortable decision. If someone, anyone, gave me a choice, I would pass Go, collect $200, and go straight to the MRI. People, let's move on with this process - this is costing me time & money, and I'm trying to acquire Boardwalk and Park Place!

So, when I went into the ultrasound room, I asked Dr. Oz why don't we go directly to the MRI since the ultrasound can only give him samples of one lesion. The hair stood up on his neck, his ears pinned back, and he somewhat sharply responded that the ultrasound was more comfortable for me. I told him that comfort didn't matter at that point. Oops... the almighty Dr. Oz did not appreciate me continuing the conversation regarding MY treatment. He then said that it is easier for him, and that "there isn't a radiologist in the country who wouldn't prefer and ultrasound biopsy to a MRI biopsy." Ohhhhhhhhhhhh. Now I understand. It was all about his comfort. He didn't say anything technical about one method getting better information, or that one method is more reliable, only that one is easier, and preferable. Does logic every come into play? I had some very un-ladylike thoughts going through my mind as he was prepping for the biopsy.

Here's the other kicker. If one of the six samples - chucks of tissue - comes back negative, then I must have an MRI biospy on the left side. I asked if he could do both sides at the same time on Thursday - the original date for the right side. He said "No because the dye injected into my system doesn't last long enough to do both sides." The left side is "high priority" and the right side is "low priority" because it appears to be nothing. Everyone now knows how much I love it when someone tells me that something is nothing. What a train wreck!

Nurse Ratchett said that they only do MRI biopsies on Thrusdays. So does this mean that I am now stretching this whole testing, biospy process one more week?! By the time they get done with all this testing, they will need to start over to make sure the cancer didn't spread over these weeks while ultrasound and MRI couldn't get their shit together. Oops. sorry for the bad word - couldn't think of an appropriate synonym to replace it.

I also had another mammogram today on the left side. The purpose was to check the marker placed inside the breast where the biopsy took place. I hope it was the hat or the shoe - my brothers always fought over the car. It is funny how they don't even put the lead skirt on me anymore. They must figure...why bother...she's been nuked so much anyway.

Still not date for surgery.
Next Tuesday, March 23, I meet with surgeon Dr. No Nickname. Hopefully she will give me a surgery date.

At this point I am so frustrated, that I feel like taking my results and moving on to another team. I need a team that is not held hostage by the incompetence of MRI and ultrasound scheduling. There must be other MRI and Ultrasound clinics that can do these tests. Tomorrow I am going to call Dr. No Nickname and express my frustrations and concerns. But of course, you cannot call a doctor directly, not even leave a voicemail. You must call a myriad of other people, in hopes that they actually give the message to the doctor sometime this month. Perhaps a well-worded fax might get her attention. Stay tuned...

Some good news...the genetic testing of the BRCA 1 and BRCA 2 genes came back negative. This is good news for Riley and Molly because they will both be negative for this "cancer gene." Also, it ruled out an automatic double mastectomy - which doesn't sound so bad at this point.

Whacky thought for the day...
Why does it hurt so much when you whack your funny bone? Shouldn't it make you laugh instead of writhe in pain?

Genetic Testing...

After I purchased a new car, all of a sudden I noticed several cars on the road of the same make, and began pay attention to the prevalence of this model. After I was diagnosed with breast cancer, I began to notice more articles and issues related to this disease. I knew they were out there, but always glanced over them. One of these issues I heard about, but never gave much attention, was genetic testing for cancer.

I asked my oncologist, Dr. Vanilla Bean, about genetic testing for cancer. He explained that there is a test that isolates the BRCA 1 and BRCA 2 genes. If either of these genes shows any sign of distortion, then the chances of developing breast or ovarian cancer is in the 70 percentile!

So when I met with surgeon, Dr. No Nickname, I asked her about this test, and she said that I could have it, if I want. Helloooooooo, of course I want. The test involved meeting with a nurse practioner, Nurse Gene, where she asked me several questions regarding family medical history. After she gathered all the information, she put it into a formula, resulting in a 15% chance that I might carry this gene. Nurse Gene asked if I wanted to continue with the test, and my answer was "No Dah...., " actually, "Yes, of course." There was a matter of insurance, because not all insurance companies cover this test. Insurance seems to be the deciding factor for every single test, scan, appointment, tissue, bandaid, etc. I have an appointment with Nurse Gene next Friday, March 19 to talk about the results.

When I think of genetic testing, I always thought it was very involved - something like a pound of flesh. However, this test consisted of drawing some blood that was sent off to Utah for testing.

So far, throughout this process, I learned that you must be loaded with questions, and question every decision. If I had not asked about genetic testing, it would have never been offered to me.
I believe it is the patients duty to get ALL the information. No one gives you information regardng all the testing options available. No one.

The MRI biopsy on Thursday, March 18, is a result of me insisting that the unknown lesion on my right be checked before surgery. (So far, everything has been on the left.) I was told that the lesion on the right was nothing, but as I wrote a few days ago, something can't be nothing. I want to know exactly what this something is before surgery plans are finalized. It's like baking a batch of cookies, you check to see that you have all the ingredients before you preheat the oven.

Whacky thought for the day...
Why is it when you buy a new car, all of a sudden it seems like there are a lot more of that model on the road? (8 years ago, but I still remember.)

Happy Birthday Conor!

Surgery Update...

I looked forward to the day I turned thirteen because I could get my ears pierced. I knew it would hurt, but the end result would be nice. - Wait. That's a bad analogy. How about...I remember waiting for the first day of school, I new it would be an adrenaline rush, but afterward would be the same old learning and homework crap. - Analogy still not quite right. Last Friday was the orginial date of my surgery. I was looking forward to it in a strange way, but it came and went without any slicing or dicing.

I still do not know when the surgery will be. I am guessing March 25th or 26th. Maybe the surgical team can sing "Happy Birthday" before the first incision...."Happy Birthday to you, Happy Birthday to you, we're going to get rid of your cancer, and your left boooooooob too!"

Monday 3/15 Ultrasound Biopsy
Thursday 3/18 MRI Biopsy
Friday 3/19 Appointment to discuss genetic testing results...more about this on next blog. I know, you just can't wait. This is just a teaser.
Week of 3/22?? Surgery

Quote Of The Day - a favorite:
"It is nice to be important, but more important to be nice." -Lisa Quigley

No Vacation...

Did you ever have a mosquitoe bite that itched so badly that it drove you crazy? The more you tried to not think about it the more it itched? It turns out the cancer is like a mosquitoe bite. The more I try to get away from it, relax, take a vacation from thinking about it, the more I think about it.

Don't get me wrong, we are having a great time skiing. However, my legs aren't having as great a time as the rest of my body. They keep screaming to me, "You are not 21 anymor! This is not Copper Mountain, and this is not that E chair that you once raced a friend nonstop top to bottom!" Or was it the A chair? - my mind has gone the way of my legs. (Lived, worked and skiied in Colorado - previous life, previous legs.)

I discovered that when you are busy with everyday life...getting kids to school, house cleaning, work, Brownies, afterschool activities, doctor's appointments, etc, the less time you have to dwell on any annoying and inconvenient illness. Plus, I'm dealing with first class hat hair! Oh yeh, one less problem to deal with in a few months. Can you imagine how much quicker it will be to get ready in the morning when you don't have to do your hair!

It looks like surgery will now be sometime the week of March 22. A very nice 49th birthday gift. I have an ultrasound biopsy on Monday, March 15 and MRI biopsy on Thursday, March 18. We need the results back before the surgery. I tried to move the MRI biopsy to earlier in the week, by Nurse Ratchett, the scheduling nurse for the MRI center, was less than ameniable.

Whacky thought for the day...
Why is it when someone is grumpy to you, it kind of makes you grumpy - if even for a moment.
And conversely, why is it when someone is very nice to you it puts you in a better mood?
We all have garbage in our lives that clouds a sunny day, but it takes the same amount of energy to be nice as to be grumpy. Actually, sometimes it seems like it takes a lot more energy to be nice, but isn't it worth? It is a scientific fact, one cannot be both grumpy and happy at the same time-after all these were two distinctly different dwarfs. Signed, Polyanna.

Change Of Plans...

It can be so frustrating when you picked out the perfect outfit and shoes, are having the best hair day, make-up is flawless, brilliant accessories , and then a change of plans. That is exactly how I felt today...got the right frame of mind, emotions are in place, family is all prepped, fat pants are cleaned, cancer is ready, but the surgery date is postponed.

Today I had an appointment with surgeon Dr. No Nickname. We told her today about these writings and that she doesn't have a nickname, so I call her Dr. No Nickname. I think she felt slighted by not having a nickname, even though Dr. No Nickname is her nickname. I though about calling her Dr. Queezy because she said that she gets queezy at the sight of her own blood. She didn't seem to embrace this name, so Dr. No Nickname it is.

Dr. No Nickname said that I need a biopsy on the three lesions floating around the cancer to see if they are also cancer. These were detected on the MRI. They immediately took me in for ultrasound #3 to locate this little lesions, and make them accessible to the radiologist for a biopsy. I didn't think that radiologists really existed, or that they they never came out from behind the curtain. I hear about them reading the x-rays, scans, MRIs, but didn't know they actually existed. So Dr. Oz -the radiologist- came in to do the biopsy, but one problem, there was no nurse to assist. They could not do the biopsy because the nurse went home at 11:30 and was gone for the day. What?! There was not another nurse in the entire hospital that could assit Dr. Oz with the biopsy! I have been psyching myself up for a couple of weeks for this surgery, but now I have to reschedule because someone can't adequately schedule staff? Also, MRI recently decided to close on Fridays, only available M-Th. It is difficult to schedule an MRI because they are so fully booked, yet they close on Fridays. Does anyone but me think that this is a poor way to run a business? I was one cranky Cancerasaurus today.

I was given two choices: 1. Cancel the necessary family getaway and get the two biopsies early next week 2. Go on the family trip and reschedule surgery. I voted for option 2. Cancer can wait, family cannot.

The second biospy is via another MRI for the other breast that has a fibroglandular island. Anything with the word "isalnd" can't be too bad, but no sand or plam trees.
So here are the scores for two weeks of tests:
X-rays/Mammograms = 2
Scans = 3
MRI = 1+1 scheduled
Blood Drawn = 3
Ultrasound = 3+1 scheduled
Radioactive IV= 2
Metalic IV= 2

It looks like Utrasound is in the lead with Scans and Blood Drawn fighting for second place, and third place is wide open... Maybe I watched a little too much Olympics.

Whacky thought for the day...
I discovered today that the lovely gown we wear for exams and ultrasounds in the doctor's office is also called a "johnny." What's up with that? I thought the word gown was strange enough, but johnny? I'm going to stick with hospital muumuu.

Happy Birthday Garrett!

The Handbook...

Today I went to the hospital for my pre-op appointment. After a 30 minute wait in the surgery waiting area, they called my name. The surgery waiting area reminded me of an airport jetway, with a television monitor listing all the patients in their varying states of operation: staging, operating, recovery, etc... landing, at gate, arrived. I walked into a small office with a nurse who informed me that this was a phone pre-admission screening. What? Fotunately I had my handy, dandy notebook with my prescreening orders that did not list this appointment as a phone screening appt.

When you are diagnosed with cancer, the diagnoser should immediately give the diagnosee a handbook/organizer. When my mom had her knee replaced, she was handed a binder with everything she ever needed to know, need to schedule, and explanations. I understand that each cancer has a million variables that makes each case unique, but there are some important tools and information that I think would be universally useful.

I got so overwhelmed with papers and appointments that I made my own notebook. There are 5 dividers: Notes, Requistions, Lab Reports, Medication, & Instructions. Natuarlly, I also have a calendar in this notebook. It is quite the fashion accessory.

Notes: I take tons of notes. There is so much information to retain. On most days, even before cancer, I could barely remember what I had for dinner the previous night. These notes are vitally important when you move to the next doctor and have questions. It helps compose the questions ahead of time. Helpful Hint to Docs: Offer a paper and pen for your patients to take notes. Most are in shock and can't even think ahead to take notes.

Requisitions: These are the papers telling you where and when you need to be for the next test, scan, and appointment. These papers also give instruction as to whether you can eat, drink and be merry before the test/scan. Acting confused (key word acting,) when actually I felt quite smug, I presented a copy of the pre-op orders to the nurse, showing her that it did not indicate that the pre-op was to be done via phone. Helpful Hint to Docs: Why don't you put a picture of the scan, and explain what this particular scan is looking for in the body?

Lab Reports: The only lab report in this section was given to me by Dr. No Nickname. It is the diagnosis of the lobular-type tumor, aka cancer. I learned from Dr. Vanilla Bean that only 10% of all breast cancers are this type...naturally, I have to be different, can't be like everyone else and get the other 90%- type of cancer. Anyway, that would be boring. What?!

Medications: After being asked twice for a list of every medication that I have taken in the past year - including Tylenol, I finally typed up a list, made copies, and put it in the notebook. After I compiled the list I felt like I needed to enter rehab - most were listed as needed for allergies and asthma - but wow, what a list. I was asked at least seven times for a list of medications. I was able to just attach the list to the forms, and promptly handed the forms back, maybe with a little big of organizer satisfacton . Helpful Hint to Docs: tell you patients to generate a list of meds and make copies.

Fashion: There can also be helpful fashion tips section that is useful when going in for the mutitude of scans. The only time you must change into a hospital muumuu is when you have an x-ray. Fashion tip: wear shoes that look okay without socks - socks and hospital muumuus are a definite fashion-don't. You can wear your clothes for all the scans, but, you cannot have a zipper in your pants, no wires in the bra, no belt buckles or wallet chains. By the third scan I figured out that I need to wear fat pants - the Thanksgiving feast, expandable Juicy-type pants and sports bra or cami. Hint to Docs: Why don't you write this in big bold letters on the requisitions: Fashion Alert - no metal!

I can go on and on about the information that should be organized in a mega-useful handbook, but it doesn't get much better than fat pants.

Whacky thought for the day...
Why is it when people say the something is nothing, I become skeptical? Something can't be nothing, because it is some thing. Only the lack of something can be nothing.