O-Day Approaches

Tomorrow morning, at 9:30 am, I have my meeting with Dr. Roger. Dr. Roger is my medical oncologist. I have been checking around, and Dr. Roger is highly respected around this town. He is actually the Director of Hematology/Oncology at another area hospital in addition to his position at mine.

I am expecting a treatment map at this meeting, and since he is an oncologist, I believe that I will learn what chemo protocol he thinks is appropriate for me. Dr. Roger will be the first doctor that I have seen since surgery so perhaps he will also be evaluating how quickly/well I have recovered.

There should be some blood drawing as well to check my elevated markers. And for the first time, it will be my job to insist that all blood draws be done on my left side. Learning to be pro-active is like anything else. One must practice. "Thank you for sticking a needle into me, but can we please use the left side?" Well, that might not work, but I am practicing in my head so that I am ready to be both pleasant and firm.

Leslie will be at this meeting with me. His job is to take notes, while mine is to listen and ask questions. I have done as much homework as I can based on the knowledge I have at my disposal. I am not anxious about this meeting per se. There will be no cutting, sedation or other painful assaults on my body, but this is the beginning of new steps, and so I am perhaps a little apprehensive.

Summer Meals

Tonight, Leslie and I decided that we wanted a lighter meal, a summer meal. So after doing my 30 minute walk at Target [which isn't as good as Shaw's], we headed to Whole Foods. Since it was Saturday, the aisles were crowded and walking was not an option. We carefully picked our way around carts and self-absorbed yuppies who lined up for the free samples.

We gathered some provisions including basil, goat cheese from Poitou [my french cousins home area], and French bread. Once home, I began the preparations. Tomato, garlic, basil and olive oil salad, a basil pesto, bruchetta, tactines, and grilled chicken.

Tomato Salad
2 cups ripe tomato [use roma, vine or grape depending on what is actually ripe] diced 1/2" x 1/2"
5 leaves basil chiffonade
2 cloves garlic crushed
olive oil

Crush garlic and add to bowl. Drizzle a little olive oil and fully mix.
Dice tomatoes and add to olive oil/garlic mixture. add a pinch of high quality salt and mix. Chiffonade the basil and place on top. Stir mixture. If olive oil doesn't coat all the tomatoes, drizzle more and then mix.

Store in refrigerator for an hour or more to blend the flavors.

Serve with crusty bread that has been grilled and brushed with garlic flavored oil.


Pesto
2 cups basil [well cleaned and dried]
1/4 cup roasted pine nuts
4-8 cloves garlic
app. 1 cup olive oil
pinch of salt
3/4 cup parmeggiano regiano cheese, grated
1/2 cup romano cheese, grated

Roast pine nuts in a 350 degree oven until lightly toasted. Rest to cool.
Place basil, room temperature nuts and garlic in a food processor. Pulse 8 times to chop into small pieces. Scrape down sides of processor.
Turn on processor while pouring olive oil through feed tube. Mixture should be semi-liquid. Add more or less oil depending on the texture of the basil.
Pour basil mixture into a bowl. Add cheese mixing gently.
Serve with anything at all. Pesto is amazing stuff.

Summer is magical. The foods that come from our gardens create the perfect meals. Enjoy!

Morning Brightness

A good night's sleep always makes the world seem like a better place, and last night I slept without waking even once.

Since surgery, any change in sleeping position has meant waking enough to grab my 'arm' pillow, reposition the pillow and then reposition me. I have gotten very good at this lovely ballet, and hardly need to wake to accomplish all this movement. However, waking every two to three hours means that I have not felt totally rested in the mornings.

I assume that last night I did move around, changing positions as I slept, but I have no memory of the ballet, and feel more alert.

Perhaps I can finally get back to the job of writing and designing databases. It is time to return to work as our bank account has plummeted during my cancer vacation. I have plenty of work waiting for me. I just need to double click the client folder on my desktop, and start.

Friday Whine

I am so darn tired of hurting.

Yes, my mobility is getting better, and I can play the violin, and I was able to really cook tonight, but there is just too much constant pain. It just tires me out.

Can I please be all better now? And pass the brie......

Skunks

We have a skunk living under our porch.

Our new neighborhood is filled with multi-family housing. These homes were built as single family summer homes between 1880 and 1915, and over the years have been split into multiple units. Somerville has a long history of two and three family homes since the incoming rent could help a young family meet the mortgage.

I don't really mind multi-family housing as a concept, but in reality it does mean that there is a constant in and out flow of people moving in and out of the area. On the last and first days of each month at least one moving van blocks traffic. Sometimes the new tenants are quiet, sometimes they are not. Sometimes they have indoor animals, sometimes they let their beasts run free.

This summer both the 2-family house next door and the 5-family across the street were sold to new owners. Now this is a huge number of turnovers, and as far as I can tell, almost all of these new tenants have cats. Outdoor cats that think our garden is the perfect retreat.

Our indoor cat, Cuffs Lynx, does not appreciate random cats walking past his favorite napping windows. Leslie and I don't appreciate our flower beds being used as cat boxes. The skunk does not appreciate being challenged by cats at all. Skunks have a mechanism for dealing with pushy or curious cats, and for the past two nights our resident skunk has used this mechanism.

Both nights we hear the cat hiss, we hear the cat hiss some more, and then we hear the cat wail after the scent has been released. The next part of this story, I am afraid includes the skunk scent wafting into our house, and then our quiet garden retreat smells for days.

I don't really want a skunk to be living under my porch at all, but I don't know of any skunk removal techniques. I live 1.2 miles from downtown Boston, and I am in the middle of a Wild Kingdom episode. This is just wrong! All skunk tips are now being accepted!

New Walking Partner

Today, Lauren, my daughter, was my walking partner. She is working full time teaching swimming and lifeguarding at a municipal pool. Every morning Monday through Thursday she is at the pool from 9-12 teaching three classes. Her other hours are different from week to week and day to day. Evidently, research has shown that lifeguards remain more alert if they don't have the same schedule every day. So this pool has a time grid, and each person moves up one slot each week.

So today Lauren's schedule is 9-12 and 4-8. With a four hour break, she agreed to walk with me at the Shaw's Supermarket.

It took a little time for her to get the rhythm of supermarket walking, and I did have to reduce my zigging and zagging [how much can a 19-year old take?] so we didn't bump into each other. The only down side to taking her was that she now knows what fun goodies are available so close to home, and we did buy a few extra items like peach tea.

For her, walking by coffee cakes FOUR times without succumbing was most difficult. They smelled really good.

Customer Satisfaction Survey

On surgery day, I made a small joke about a customer survey in a comment. Well, at 5:00 pm today, my phone rang, and it was a third-party group which was, I kid you not, conducting a customer satisfaction survey for my hospital!

For each question, there were five possible responses: excellent, very good, good, poor and very poor. Then there were open-ended questions... who went above and beyond with names and a request for suggestions to make your outpatient surgery a better experience. Can you believe this?

My only disappointment with the survey was there was no $50 coupon for my next procedure.

Thinking of Others

Today, my new friend starts her A/C chemo.

I met her in a cancer chat room, which substitutes for a support group. The chat room interface is driven by LiveWorld and is really mediocre. I don't even try to use the room with my Macintosh. It is java-based so ten seconds of text hit the room at the same time, and you have to scramble to read everything that is thrown into the room quickly, because you can't scroll back up. The set up of the room allows people to use a different sign in name every time they come into the room. It is controlled chaos, but somehow I felt a kindred spirit coming from one screen name.

I haven't joined a support group for several reasons. By nature I am not a joiner, but in this case I can see that there could be some benefits. Also, the meeting times are really inconvenient: Tuesday 2-4 pm. And finally, it is an anyone-can-join group and the chances that there won't be at least several members who drive me nuts seems really small. So I have been using the internet to connect with women who are traveling this same road.

And so my new friend, who found her lump only days before I did, is starting her chemo today. She is energetic, engaged with life and taking care of her two-year old daughter in ways that are admirable. She is full of love and, for lack of a better word, spunk. Yea, I know you don't know her, but I don't care. Today, please send positive vibes in the direction of Seattle, so that she has more strength to meet this day with dignity and resolve.

July 26th

Wow. I just noticed that today is the 26th; my two-month-found-a-lump mark. Maybe that is why I have been introspective today, or maybe not!

I called one of my favorite clients today to discuss Filemaker and Quickbooks integration. I have referred him to a specialist, but he can't afford me, much less the specialist. [Why are my favorite clients always poor?] He is the executive director of a therapist training non-profit in Cambridge, and I have recently written a solution for managing all their courses, students, teachers, and registrations. He, smartly, views me as more than a database designer, but as a business consultant, and uses me as a sounding board for many of his strategic decisions. He, David, knows that I took some time off because I was not well, but today he learned the name of my illness.

David's reaction was subdued, concerned, and then he offered me free counseling from his stable of therapists. He calmly discussed how many of his therapists were blown out of the water when they were dx'ed. He didn't really believe that I hadn't felt the need to talk with someone, professionally.

So, I began to wonder... where is the angst?

Before the surgery, I was bouncing off the walls. Why am I so normal now? Should I need a therapist? Could I need one and not know it? Or is the fact that I am doing something [i.e. healing] all the therapy I need? I was terrified before surgery, but not now and I couldn't tell anyone why that is.

So is there something wrong with me since I don't think anything is wrong with me? A conundrum for thought.

Moving Back into Circulation

Today was supposed to be my first day back to a client office. This client is a mid-size non-profit. They are the only client that I visit once a week, helping them with their database, accounting, and general technical support. I had arranged for a ride back and forth, but first I called to confirm that the payroll numbers were ready for me. I was told that payroll had already been done! No reason to come in. I left a simple message for the director that if she needed me, to call.

At 5:30, the real accountant called. She hadn't done payroll. This means that no one has done payroll. I have to figure out how to get there tomorrow or no one will get paid. Ridiculous!

The good news is, however, that I really practiced today. I have just finished two hours of etudes. Now, I am not moving really fast, and my fourths aren't absolutely perfect, but the amount of pain is completely tolerable! I was able to work through about half of the Kreutzer book and then I moved into the Rode Etudes et Caprices. This stuff is on the boring side, but will ensure that as I work myself back into shape, that I am not leaving holes in my foundation.

Perhaps tomorrow I will add some Beethoven Symphony excerpts. They are always good for this type of work, and I love them.

Hot weather has returned to Boston so the air conditioners have been turned back on. I really enjoyed the fresh air over the past few days, but until the steri-strips fall off, I am under the no-sweat rule. So the windows are closed and the a/c is on.

Tomorrow I am having some visitors so I think I should make banana bread tonight to have with our coffee. It will fill the house with the lovely smell of baking bread and be delicious.

The Garden

When we purchased this house, almost 2 years ago, one of the attractions for me was the garden. The previous owner was Irish, and had created an English-type garden maximizing the space available. Since we live in town, lot sizes are pretty small. But we don't need a big yard. We simply want an outside space that is peaceful so that we can enjoy the very short summer season.

This year we planted tomatoes and herbs in containers and as you can see, they are progressing very nicely. We have planted four types of tomatoes hoping that they don't all ripen on the same day. I have a wonderful green tomato relish recipe because in New England, there are always green tomatoes at the first frost.

It is a rare evening that Leslie and I are not sitting in the garden in the evening light enjoying a cup of coffee. Occasionally, we sit out there after dinner with a glass of wine. It is like taking a small vacation every day. I always feel refreshed.


Tomatoes, basil, sage, rosemary, thyme looking towards the West.



And then looking East.



A wide angle to include the vegetable and flower garden.

Generosity & Selfishness

Today I had to write a thank you note.

It turns out that this very nice friend, who sent me two lovely gifts to assist me in recovery, has been having her own medical dilemmas and I hadn't noticed. I hadn't noticed at all because for the past five weeks I have been pretty darn self absorbed.

That is hard to stomach. It isn't how I like to view myself, and I am embarrassed. Oh, I could use the excuse that she has moved to another state, or, we aren't 'phone' friends instead conversing by IM and email, but those are just excuses.

Are there other things that I have let slip off the radar?

Cole Slaw

J and K are coming for dinner. This is a simple meal. In fact, just an ordinary meal that we have invited friends to enjoy with us. J, Leslie and I have one food thing in common- none of us likes mayonnaise. [J goes as far as to say he is white food phobic.]

I am the newest member of this club. As a kid, I loved mayonnaise, but after our first family trip to France where we stayed in the heart of olive oil country, I use it very sparingly in my food preparation because it no longer tastes good to me. As J likes to say, I only use it to hold things together. Mayonnaise has been moved into binder status, and doesn't come to the table anymore.

However, I love cole slaw. When I was pregnant, uncooked cabbage was suggested as a good food item for me to eat, and boy did I. I ate cole slaw as often as I could. If you do not like mayonnaise, eating cole slaw becomes much more difficult.

This summer I have been investigating non-mayonnaise based cole slaw. Last month I tried the North Carolina Cole Slaw from the epicurious.com site. It wasn't bad, almost good. That is what I was planning to make for dinner tonight. Before getting started I decided to take a look at Bittman's How To Cook Everything to see if perhaps he doesn't like mayonnaise either, and I have hit a home run!

I omitted the bell peppers and substituted an extra cup of cabbage, and added some celery seed that I had ground up in the pestle. Good quality black pepper and I chose Mediterranean salt.

This is fabulous! [see page 104 if you are playing along at home.]

Dribs and Drabs

I have finally admitted to myself how disappointed I am that my surgeon was unable to tell me that there was absolutely no evidence of disease. When you have cancer, those words are the holy grail. Unlike other moments of realization, this one didn't make me sad. I am not gnashing my teeth or screaming "why me?" It is just another data point on this road.

I am now 8 days post-surgery, and I still need help showering and dressing. I am still unable to squeeze with my right hand making writing with a pen impossible. [I am so behind on thank you notes!] I am able to lift some things with my right hand, but my left arm is doing most of the work these days.

In the past week my left arm/hand has learned how to: do up buttons, brush remaining hair, open and close car doors, control scissors, turn pages of books, get me into bed and control a spatula. I tried tossing food in a fry pan with my left hand, but that was a total disaster and when I am stronger, will mean cleaning the stove top. It seems too bad that in kindergarten, I was tapped with a ruler anytime I used my left hand to manipulate crayons, etc. Both of my sisters are left-handed and I suspect that if I had been left alone, I would be ambidextrous. I could use that skill right about now.

More violin playing this morning though! I have pulled out some old etude books so that I can get back into good playing shape. Unfortunately, I am missing two favorites. I must have lent them to students and forgotten all about them. I can replace them on Monday when Yesterday Service is open.

It has become clear that the non-incision pain I am experiencing in my right upper and lower arm is not chafing. It is nerve damage or nerves rebuilding or something. Rubbing a little moisturizer is not going to fix this. So, I am going to call the Breast Center and talk with Judi the Nurse Oncologist about this. I want to know if these sensations are normal, am I making things worse if I push my mobility, etc etc etc. My new friend Gretchen has a Physical Therapist working with her, and I am now wondering if this might not be a good idea for me too. I would hate to lose flexibility just because I didn't know about an exercise or two.

Todays Shaw Walk went well. We actually needed to buy some items, but my fears are being realized. Was it three days ago I saw that bagel chip display? Today I succumbed and bought some. For lunch I made some chicken salad from our left over roasted chicken.... very little mayonnaise, a little olive oil, pickles and onion and served it atop local red leaf lettuce accompanied by crispy little bagel chips. Last night I made some mint iced tea and had some with my meal. Now that is a lunch!

The weather today is New England perfect. 75 degrees, 42% humidity, a light breeze from the ocean, and clear as a bell. This is why we tolerate winter... just for days like today. In response, we are firing up the grill [well, we do that year round and it isn't weather dependent,] grilling some burgers, making some cole slaw and grilled zucchini, along with a tomato salad that Lauren really likes. Our good friends will join us for supper and they are bringing ice cream. It was noted that a pixie-do viewing was incentive for coming in town to see us!

The official photographer of all things hair related has been too busy working every available hour to take a picture of the pixie-do for web viewing. Lauren is determined to go to college with some cash in her pocket and has been regularly working way more than the standard 35 hours a week. Maybe tonight I can get her to help out with the camera.

Pedometer

Yes, I have a pedometer! The lovely Shaws Supermarket is exactly .5 miles if you travel all the aisles with the exception of the three health/pharmacy/beauty aid aisles. I don't like that section. The floor is a different color, the lighting is too harsh, and it doesn't belong in a supermarket since there is a real pharamacy right next door.

I can now walk the store in ten minutes without pushing myself. So three times around will be the thirty minutes and equals 1.5 miles. And if I do some extra zig zags, I know where the bagel chips are now.

A Sisterly Visit

Though you wouldn't know it from this blog, I have two sisters, both younger. Margaret, the LA, just had surgery sister, is 4 years younger than I am. The other sister, Sarah, is only 18 months younger. We have never been close.

Sarah thinks that the homeless should be locked away where they won't bother her, she thinks Social Security is fiscal foolishness, she believes that anyone who is being left behind by society simply isn't trying hard enough... she calls herself a libertarian, but in reality she is a fiscal conservative with a pragmatic edge.

I am a knee-jerk liberal.

There are many topics we simply can't discuss, but in spite of our tremendous differences, over the past 10 years we have worked hard to create an adult relationship that is based on shared values and wine.

Sarah did very well. So well that at the age of 40 she retired to a ski town in Maine with her then-husband. Though she probably doesn't need to work, she has held the position of Planning & Zoning Commission Assistant or some such title for the past year. She loves her job, she loves her life, but since her sister is sick, she came South to visit.

Sarah doesn't like to know details. She doesn't want to know when I am not feeling well. In fact, one night she called and said "You must be feeling good about " And I lost it. Sorry, nope.... that isn't how I feel. The compromise is that I will only call her on good days. She doesn't want to be part of the inner circle of my support system. Instead, she wants to be in the cheerleading section.

And so I harnessed up for her visit, so she would see only the best, and we had a very nice visit.

For dinner we headed to a hip and cool Indian Restaurant which does great curry and tandoori. It turns out the Sarah's man doesn't like curry and since she does, this was a wonderful choice. There isn't much Indian food in Maine. Heck, there isn't much ethnic food of any type in Maine unless you count Stouffer's French Bread Pizza [which I most certainly don't.]

She ordered chicken curry, I had the rack of lamb tandoori, and Leslie opted for the shrimp tandoori. Fabulous!

Once home, Sarah and I sat in the garden drinking wine. We had to move up to the covered porch when thunderstorms came rolling through. And so there we sat, a top the first hill off the coast, watching the lightning flash over the Mystic River, rain pouring down in buckets cleaning the air while we talked about everything and nothing.

In the end, I drank too much wine, but didn't manage to keep up with her. We fell asleep around midnight as the cool air began to fill the house. After two cups of coffee this morning, Leslie took her to the subway, so she could begin her long way home by bus.

It was very good of her to travel all this way, and it really was an enjoyable visit.

Mixed Evening

Tonight, Lauren and I made dinner together. She needed to do most of the chopping and dicing, while I harvested basil and oregano from the garden and cooked the food. We made a simple tomato, garlic and onion sauce to top our fresh egg pasta. The two of us have been cooking together for years and easily work side by side. It was a pleasure to give Leslie a night off. He has been so good to me over the past 6 days and he deserves a respite.

Unfortunately, I have more pain tonight and that has made me uncomfortable. I took some aspirin as a pain modifier and that has helped. A quick check of the incisions indicates that all is well, so I think that the steri-strips are actually causing the discomfort. If I am still experiencing this pain tomorrow, I will call the Breast Center to see if they have some tips.

I was, however, determined to try playing some violin tonight. I didn't do much... about 4 up and down bows and my arm is fine. My fingers are fine. The only discomfort was the chafing under my arm. Thank you Dr. Maryjane!!!!

And finally, the dress is done and it looks great. Now, I don't know if it looks great on me, because it isn't button down so I can't try the darn thing on. Two steps forward and one step back.

Forgetting to be Sick

This morning I awoke too early [based on bed time] because I was just uncomfortable. Finding sleeping positions that don't cause irritation is a nightly battle. It was actually easier when I was drugged. I simply didn't move at all, because, well, I was very drugged. But I am no longer drugged, and so I wake up frequently.

Leslie and I then headed down to the Shaw's plaza for our morning walk. Since I am looking for a pedometer, we stopped in Bob's Store. I have never been to Bob's store because they advertise themselves as a sports store. They are NOT a sport store. They sell clothing that make you look like you might play sports and some Red Sox memorabilia. (Since last Fall, there isn't a store in the area that doesn't sell stuff with the Red Sox logo, so this does not a sports store make.) When we asked one of the many sales staff if they had a pedometer, the answer was "what is that?" They did have swim goggles, but no pedometer. But while there, Leslie saw some shorts. The exact kind he hadn't been able to find this summer. While he viewed and tried on, I walked the store in circles until he was ready to leave.

We then walked to the other side of the plaza to make a deposit, and then returned, past the Bob's Store to walk at the Shaws. The excitement of remembering to buy a mop head faded the moment it became clear that we had bought the wrong size. Why are there so many sizes anyhow? So while Leslie got his $7.99 returned, I walked the entire store. And then when he was making his one purchase, I walked it again.

The biggest problem with the Shaws Supermarket is that I don't actually want to eat anything they sell. Oh, canned Goya beans are fine, as are Triscuits or Thomas English Muffins, but the vegetables are awful! And the meat isn't much better. For real food, we have to go elsewhere.

Since we are almost out of our coffee, we headed crosstown to the Whole Foods. While Leslie weighed the beans we use for our own house blend and met the new coffee roaster, I walked the store. Up the aisles and down the aisles. I found the tomato soup I liked. Returned it to the basket, and then did the store again.

I am exhausted! Sometime this morning, I simply forgot that I was sick and started going for some kind of masectomy after-care walking record. Dumb, dumb, dumb. But, I have a date with Leslie for 4:00 pm. We are going to take a nap!

Results are In!

Dr. Maryjane called tonight at 6pm. She has the pathology report. [Yes, it is mostly good news!!!!]

Before diving into the pathology report, we discussed my recovery which gave me an opportunity to ask about an unexpected pain I started experiencing today. It is within the breast and feels like a medium pinch behind the nipple, not the incision site. Dr. Maryjane says that though this type of pain is not common, it is normal. This sensation is the nerve endings trying to reconnect and grow back. She warns that I will probably experience sharp, burning acute pain.

Then we dove into the pathology report as I grabbed a pen. At this point, I don't have my own copy, just the notes from my conversation.

Tumor Removal: around most of the tumor, Dr. Maryjane got very good margins. In one small area, she got good margins, but she believes that Dr. Mary Ann [radiologist oncologist] will find them to be sufficient.

Tumor Type: Infiltrating Ductal Carcinoma
Tumor Size: at its largest point, 2.2 cm
Well differentiated tumor, grade 1

Nodes: 4 nodes were removed, all negative!!!!
precancerous cells were found in the breast and removed with the tumor

Lymph vessels: possibility of a few cells within the lymph vessels
Estrogen positive
her2 Negative

Blood Work:
liver normal
CEA CE8; slightly elevated but of nominal concern
CA 27.29 [breast cancer marker] elevated. [Dr. Maryjane will test this on August 4th. If still elevated they will do CAT and Bone Scans. However, she is not overly concerned since I had a tumor.] [Added: CA = Cancer Antigen]

What does all of this mean? It means that I will need no additional surgery!!! It also means that this damn cancer was on the move and we got it before its march made it to the lymph system.

This is darn good news, and I might just celebrate with an adult beverage! YeeHAW!

Wednesday's Walk

Walking at the mall last night was alright, but the parking fees have doubled and there are so many really large teenagers who are only paying attention to members of the opposite gender that I get nervous about getting jostled during the flirting sessions that ensue.

So today, we headed down McGrath Highway to the new Shaws Supermarket. Though it has been opened for over a month now, it is generally empty. Since it is a new market, the aisles are wide and spacious, the store foot print is huge, and the air conditioning is downright chilly. Leslie and I walked all the aisles. I zigged and zagged so as to take three steps to his one, trying to maximize my movement.

An added bonus was that by the time we had traveled the entire store, we had a new mop head [which we never remember to pick up] and food.

Tomorrow when we return to the Shaw Market for my walk, we will just have to think of something that we forgot today. I am going to find a pedometer and try to add more walking each day. Rumor has it that if you walk at least 30 minutes a day before and during radiation, the most common side effect of that treatment, fatigue, can be reduced significantly.

Mall Walking

Tonight, after Lauren returned home from work, we headed to our small, local mall. Today's temperatures are close to record breaking and no one was interested in heating up the kitchen. Fully harnessed, we headed out in the car with the air conditioning running full blast.

We had three goals for our trip. Eat some dinner, walk for 30 minutes, and look for inexpensive button down shirts. Dinner was easy. Food courts let everyone find something that they like. After eating, Lauren took off on her own after setting an 8:35 meet time at H&M while Leslie and I headed to the third floor to walk. We walked the halls quickly and did the Susan-Speed-Sale-Rack-Review at interesting stores along the way.

As 8:35 approached, we headed down to the first floor past the food court and the Cinnabon, into the new H&M store. I was slowed down by a 19-year old who doesn't believe the Susan-Speed-Sale-Rack-Review method of shopping is acceptable so I started to notice something really odd. No matter where I went in the store, it smelled like Cinnabon. I started checking ever few feet, and yup, there was that smell. I thought this was really unusual for a modern mall to allow food smells to infiltrate a clothing store. Then I wondered how the staff stayed so slim while smelling Cinnabon all day long.

Lost in my thoughts, I looked back and saw that Leslie was following me, and he was carrying a Cinnabon bag!

Finding Things to Do or Puritan Rule No 1

I had such a Puritan upbringing that the lessons learned live in my bones. I simply can't disregard them. The Puritan outlook believes that idleness is the work of the devil, that we should all be independent beings only relying on ourselves, and that fun is a waste of time.

This week I have been battling item no 1. Idleness. Perhaps buoyed by my Panera sandwich or by a long nap, last night I dove into a project that has been sitting in the guest room waiting for me.

But first another Puritan lesson. Sloth. Puritans don't like sloth. Puritans shouldn't be overweight, they should look like models in the LL Bean catalogs [which means NO hips.] However, even at my thinnest, which was very thin, my top and bottom half were not the same size. There is something wrong when a young person who is 115 thinks she is huge because they can't find a dress that fits both halves, but that is another blog.

So over the years, when I have found dresses that I liked that also fit and make me feel good about me, it has been like finding a pot of gold. If you found a designer that cuts their clothes to fit your body type, you have found heaven. And about 10 years ago, I found such a designer. Gayle River was a female owned textile firm that tried to design and produce their clothing in northern New Hampshire. They made the nightgowns that appear in the fancy Garnet Hill catalogs, and operated an outlet store in Littleton NH. That store became a destination.

One year, I hit the bonanza! Three dresses in one trip and on sale for [I kid you not] $8 a piece. Two years ago, I headed my car to Littleton only to find the store front was now selling creches, plastic jesus statues and rosarie beads. Gayle River had gone out of business.

So I started taking better care of my favorite dresses. Yet, one by one, the dresses fell apart until at the beginning of this summer, there was one dress remaining. I curled up in a chair and heard the rrrrrriiiiiiiiiiiiiiiiiiiiiiiip. The last dress was gone.

The weeks leading up to surgery, I had a lot of nervous energy. I laboriously deconstructed the dress, stitch by stitch. I bought fabric, making a wild guess as to how much I would need.

And so this project was waiting for me. Last night Leslie helped me move around a table and I cut the fabric. Today I am sewing it all together. At last, I have found something to do which doesn't involve lifting or sweating or otherwise breaking one of Dr. Maryjane's many rules while not breaking the Puritan rules either.

Balance has returned.

Rainy Mondays

I feel sensitive today. It is as though the sensitivity from my tumor has remained, and has found a new home in my heart.

Yet, I feel stronger. It has been over 36 hrs since I took a prescription pain medication. I did take some extra strength tylenol before bed so I knew that I would actually get some sleep, but have remained drug free all day today.

And... drum roll please... I left the house! I am a pretty informal person, but leaving the house in my pj bottoms was too much even for me. Instead I changed into some oversized linen black pants, and slipped on my trusty oversized gap men's shirt. And we left the house!

We were in search of what Dr. Maryjane calls comfortable & supportive underwear. What I ended up with is a young woman's worst nightmare but it works. In the Boston area, there is only one place to go for practical underwear designed for women who have recently had surgery-- Lady Grace. Now imagine a store front, designed in the 50's for women 'of a certain age.' The window displays are housecoats and nightgowns that don't even pretend to have any natural fibers. Inside you can find lots of old lady undergarments, discreetly boxed. But the women at Lady Grace do this well. They fit you, they jostle your breasts until they fit you into these restrainers, and they murmur.

I had forgotten that my mother had taken me to Lady Grace many years ago, 23 years to be exact. My mother finds the discussion of underwear distasteful [a trait I seem to have inherited.] At my final fitting for my wedding dress, the young girl mentioned that perhaps a bra was needed to let the dress truly shine. Well, a bra hadn't occurred to me, and if it had occurred to my Mom please see above how she feels about talking about underwear! She looked at me and uttered two words: "Lady Grace." And we were off.

In spite of the fact that Lady Grace is really about older people, and people who needs support hose, or really large skirted bathing suits, they also knew exactly what type of bra my dress needed, and had some really nice camisole/panty combos in cotton which my Mother paid for while blushing.

And here I was, 23 years later, back. And needing some of that support stuff. I don't know why, but as I began to explain what I needed to the matronly salesperson, I started to weep. Where did that come from?

I was whisked into a fitting room, and gasped "there is a mirror. I am not ready for a mirror." However, they have no rooms without mirrors, so I faced away as I took off my gap shirt. I put on and took off this gap shirt 4 times, and tried on 2 bras by MYSELF! No helping at all. I am regaining my mobility and that is a wonderful thing.

I am now the proud owner of a breast harness. This lovely bra has enough fabric to make several shirts, and reminds me of everything young women fear when going to the bathing pool with their babushkas. This is serious stuff. There is no fear that my breasts will jiggle even a little bit. They are in lock down now!

After leaving the kind women of Lady Grace, Leslie and I headed to Panera Bread for a well air conditioned lunch. I had half a smoked turkey sandwich and Leslie enjoyed a Roast Beef Asiago, and we both got large lemonades.

Why Panera Bread? Silly really, but my sister Margaret and my Mom ate at Panera Bread in LA for at least five days following Margaret's surgery and Margaret's recovery was so fast. I thought, mmmmm, maybe there is something to the Panera diet. Plus the Panera Bread store is in the same plaza as Home Depot, and Leslie needed some screws.

A quick ride home and I was totally and completely exhausted. No, I didn't want to go walking at the mall, no I didn't want to go to the fabric store to look at buttons, I just wanted to go home and crawl into my bed. I smiled as I slipped into sleep thinking MP-Marilyn is right, I should use this time to rest.

Progress Report

I am very impatient. I felt so much better yesterday, that I expected to feel even better today. And I do, but not as much better as I would have liked.

I overcame my fear of water, and took a shower which means I feel fresh and clean. A wonderful sensation. I have now determined that I have lost some sensation in my upper arm, but all my fingers seem to have their full touch. I continue to reduce the vicodan and have substituted tylenol. I will save the stronger stuff for night time sleep.

To be honest, I am just a tad bored. I can't lift anything, so cleaning out bookcases or closets is out of the question. Reading while still medicated feels hard if the book actually has plot lines that need to be followed. I am not supposed to sweat on the incision, so moving out of the air conditioning seems imprudent. I have had several long and wonderful phone calls with friends and a short nap. Now what?

Not doing anything is the hardest thing in the world for me to do!

But, I just got a call... visitors are coming! I must go fluff my new pixie-doo.

Surgery Day

I didn't want to write this entry before I could remember my own name. Again we run into the issue of how much does any particular reader wish to know. So, I am creating a spin-off. If Hollywood can do it, why not me? If you really want the details, head over to http://www.anotherplanmedical.blogspot.com for that stuff. (I will write more about the procedures as I get stronger over there.)

We arrived at the ambulatory surgical waiting room at about 5:50 am. The streets of Boston are fairly empty at that time of day, deserted except for cats and birds everywhere! Occasionally, we were passed by speeding Jeeps or SUV's. We were driving slowly since crashing over potholes isn't that comfortable for me at the moment. Boston drivers aren't known for their consideration, and driving through such a quiet city was peaceful. The riverway looked green and the bamboo was swaying in the breezes.

We have come to know this route very well in the past month, and know where to park so we are close to the elevators. The waiting room was not empty when we arrived, but the receptionist was not there yet. Each group huddled together. There was no interaction.

The receptionist arrived and started shuffling paperwork. She went in and out of the doors and then shuffled more paperwork. This was like watching a car wreck in slow motion. Then she licked her fingers to shuffle the papers some more. This may not be a great habit for someone who works in a hospital. She walked around to each patient group and checked them in. Then she turned on a conservative talk show program on her radio. I had to move to the other side of the room. I needed calm more than anything else and listening to those hysterical voices wasn't going to do it for me. [Leslie says when he returned to the waiting room later, the radio was silent.]

I was called into the pre-op area early. Nurse Judy was my pre-op nurse, and once again Leslie was invited to join me. Though he can speak for himself, he appeared terrified to me. Terrified for me, might be more accurate. Nurse Judy went through much of my medical history again, reconfirming my allergies, taking blood pressure readings and my temperature. She gathered other nurses together to witness my health care proxy. She explained that I was the first and most complex surgery of the day. Later I read her notes, and they included who had brought me to the hospital and their relationship to me, and my mental state. She then explained that the anesthesiologist team would arrive around 6:55. We had about 20 minutes to wait. I was already dressed in my hospital robe and cute hospital issue slippers when Nurse Judy asked if I wanted a warm blanket. I thought she meant wool or fleece, but it was hot! They have a blanket warmer and dole out white, warm cotton blankets to all the patients. While waiting for the anesthesiologist, I fell asleep but woke almost immediately. Hospital gurneys are not comfortable.

My first anesthesiologist arrived right on time. He was a young resident, and he began chatting about where was I from, he was from California, and I allowed how his ocean was on the wrong side, and he proclaimed that it was my ocean that was misplaced. Dr. DiSilva was the perfect amount of warmth and professionalism for me. our verbal banter was distracting and playful. He carefully walked me through what he would be doing, and then he hooked me up. His attending, who mumbled his name, and who I was unable to understand arrived and checked the work. No changes were made.

By then the surgical resident, Dr Avery had arrived. Dr Avery looked about 16, but again so much warmth. He gave Leslie the pain medication prescription to fill while I was in the operating room. He asked some more questions such as had I been hospitalized since the last time I had met with Dr. Maryjane. As the doctors began to stick needles into me, Leslie slipped out. That is our deal. He stays until they start treating me.

Then Dr. Maryjane, my surgeon arrived. More questions and answers. I thanked her profusely for her phone call on Wednesday. She murmured questions to Dr. Avery, teaching him small things. I know I have said it before, but I love hearing good teachers teach. She was encouraging and thoughtful with Dr. Avery. She left, returned and then the four minute mark was given.

Dr. DiSilva smiled at me and said... let's start that cocktail. And I remember nothing else until I awoke in Recovery Room 1.

I now had Nurse Jane who had the most intense blue eyes. She was perky and cheerful and offered more warm blankets. From my bay I could see where the blankets came from. It looked like a refrigerator with a large door on the bottom and a freezer compartment on top, except the freezer was a warmer! What will they think of next?

Jane made me cough and take deep breaths saying that my breath still smelled like fruit which meant I still had too many of the drugs in my lungs. I asked for water, and finished that quickly. Dr. Maryjane stopped in and told me that she thought she had clear margins and that my lymph nodes looked good. I think I fell back to sleep since I remember asking Nurse Jane if I had heard correctly while repeating back. She laughed and said yes, but that she couldn't believe I even remembered Dr. Maryjane's visit. Now it was time to walk. I needed help and so back into the chair for me. I remember Ginger Ale, which is what my parents gave me when I was sick as a girl.

And then Dr. Maryjane returned! Four visits I received from this woman! She repeated that the operation had gone smoothly, that she believed that she had gotten clear margins, and she saw nothing of concern in the two lymph nodes that she had removed.

I was then moved to Recovery Room 2, where Leslie joined me. He was smiling. Dr. Maryjane had visited with him in the waiting room, telling him exactly what I thought I had heard. I was assigned a new nurse who wasn't particularly attentive, but I finished my ginger ale and managed another walk. And it was time to go home.

The same orderly who had helped me in the morning, helped me into a wheelchair and told Leslie to pull the car out of the garage. While moving in the wheel chair I began to feel nauseas. My orderly, whose name I didn't catch, offered to move slower. When we got to the curb, I thanked him again. He put his hand on my shoulder and thanked me for being so polite, and wished me all the best. It was so sweet. And then Leslie arrived in the car and we went home.

Leslie bought a little pillow made from two washcloths in the early 70's [I thought his godmother had made it for him.] It is a soft pillow with many memories attached. We placed that between me and the seat belt so I wouldn't be hurt.

Unfortunately, I continued to be nauseas for a while after returning home but once that was taken care of I spent the afternoon napping, drinking water and coffee [what a caffeine-deficiency headache I had!], and doling out my pain meds.

A light supper of tomato soup and crackers was all I needed to eat, before falling asleep again.

[Added: I am not sure if my intentions came through. I felt so well-cared for by just about everyone I encountered on this extremely stressful day. This is a nasty thing that is happening to me, and these professionals took care of me both physically and mentally. I am grateful.]

Still doing Well

I have now been home for over 24 hours, and I can't believe how well I feel. I am still taking pain medications, and keeping ice on my sore areas. But I have started reducing the amount of vicadin I have in my system, and am feeling more and more alert.

Today has been spent having a small breakfast of oatmeal perfectly prepared by Chef Leslie and reading Uplift sent to me by my new friend Kristina. That I can concentrate enough to read is a huge indication of how quickly I am returning to being me.

Uplift has been wonderful reading. It reaffirms that there are so many ways to be strong through treatment and many ways to be alive after. Good stuff!

[edited at 7:42 pm. reducing the pain medication was overly optimistic! Had to increase a little but still able to read.]

Making me Smile

This is the last email I received before heading to the hospital for surgery. I didn't know that it was possible to laugh out loud on the way to surgery, but it is! I have eliminated the names to protect the innocent.

===========================
From: L
Date: Fri, 15 Jul 2005 01:53:17 -0400
To: Susan
Subject: Re: To Blog or not to Blog...

Susan, I'm TOTALLY enjoying your writings.YES,TO BLOG! i wish i could draw...i'd make you a drawing of Leslie in a "wife beater " undershirt... he'd have a confederate flag tattoo, (but maybe another of a violin or cello on the other arm) and he'd be attacking you with a zuccini. you would be wearing great fuzzy lavender slippers.

but alas, none of us are as freakishly multitalented as yourself... so the image will have to stay in our imaginations. By the time you read this tomorrow, it'll be almost yesterday.... (you know what i mean, sort of, RIGHT?)

talk to you soon,

love L

ps what, no pix of the pixie cut?? you chicken.

I am HOME!!!

I am home and I am totally okay!

I have been home since noon, and have spent the day dozing, taking pain medication, and being waited on hand and foot. Sandi brought us a wonderful dinner of lasagna and salads, so Leslie has been well-fed.

Overall, I am experiencing very little pain. Though I am moving slowly, I am moving. I am suddenly feeling totally fatigued, so I am going to post the email I just sent out. I will write more when I have another energy boost.

==========================

Dear All My Friends,

I am okay!

My surgery went exactly as planned. The doctor believes that she got clean margins, and she didn't see anything 'dirty' in the lymph nodes. But she does caution us to wait for the pathology report before popping the champagne.

I was home by noon, and have spent the day in bed napping, drinking water and coffee, and doling out my pain medication. My doctor had promised that I would not be in a great deal of pain, and she was right. My discomfort is minimal. I just need to careful with how I use my right arm.

I should be ready for phone calls and visits before the weekend is over. I turn off the ringer if I am napping, so don't hesitate to leave a message. I can not thank each of you enough for all the love and kindness you have shown me.

With gratitude and love,

*susan*

Surgery MOrning

it is 5am now, and I am in the most stylish outfit of Target pj bottoms, an old tank top and a lovely oversized Gap men's button down shirt. I am not sure what shoes goes with this outfit though.

I actually slept last night, but I don't think Leslie did. I heard him going in and out of the bedroom door several times. This is scary.

Please send your thoughts and wishes to Leslie and Lauren too. As I said last week, this isn't all about me.

Thank you all for all your emails, and calls, and postings. I will update as I am able.

Love,

*me*

Irony & Timing

Today has been a day of change and reflection.

Not really very surprising. At least once an hour, a friend either calls or emails with their own thoughts and best wishes. One friend will be at the top of a mountain during my surgery, and will look out over three states and think of me. Other friends are more scared than I am. And others sound like generals, encouraging me to fight. I feel totally loved.

Today, I am mostly struck by the irony of the timing of this disease. At 46, I was finally coming to grips with who I am. [Yea, I am a late bloomer.] I was liking who I have become, and was starting to celebrate what is good about me, instead of always dwelling on my shortcomings. And I do have shortcomings. I don't tolerate stupidity well, I am impatient, I can't stand rap and most of what passes for popular culture, I dislike misogynists and refuse to play along, I am terrible at chit-chat and I have no tolerance for hypocrisy.

I was coming to grips with my genetics and accepting that I was just going to be 20 lbs overweight. I had come to appreciate my nutty hair and just let it do whatever it wanted. I was okay with my impatience with stupidity, but working on being more patient with the uninformed. I tried to focus on the good of my person. I have a wonderful, if quirky, sense of humor, I am a loyal friend, I am good at solving my clients problems, I play Beethoven and Mozart really well, my bow technique is darn good, I am becoming a very good cook, and I love sharing my house and the resulting meals with friends and family.

I am ready for my daughter to go to college, and revel in her happiness at moving to the next step. I love our new home with its garden, open rooms and odd kitchen. Since moving here, I have felt connected to my environment. I was content and was beginning to find my joy once again.

I didn't need a diagnosis of cancer to remember to notice and enjoy the small things, or to hold my family close to me, or any of this pyscho-babble I have been reading on cancer support sites. I had that down!

But on this, the last night before the surgery, I am serene. I am ready to begin treating these darn misbehaving cells.

Pixie Cut

Kim, my wonderful hairdresser, just became a mother 8 weeks ago. She has a beautiful and healthy baby boy. I start using Kim to cut my hair way back in 1995. She was not only very young but exuberant. I watch her grow from a party-girl, to a new bride and now a mother. When she opened her own shop, I was her first haircut.

At first I liked her mostly because she didn't have to chat while cutting. And then we began sharing recipes and when my daughter started to use her, her adoration of my daughter brought us closer.

This morning, I arrived at 9:30. I insisted on talking about the new baby and oohing and aaahing over pictures before we moved onto me. We tied the hair into elastics and cut. The back is very short with more length on top. Kim wouldn't let me pay for her hour of time, and as I left every woman in the shop gave me a hug. How amazing is that in the town known for coldness?

Both Leslie and Lauren think the haircut is cute. I think I look about 12 now, like an overgrown pixie, but Kim did a fabulous job. She made what could have been a traumatic experience, a shared experience among friends, new and old.

Pre-Op Testing

In the past few weeks, I have been asked more times that I can count by medical professionals: "Is that normal?" What they really mean to ask, it turns out, "Is this normal for you?" My response is always the same. "I don't know." I have never been sick before." And what follows is a response look of total bafflement.

But I have not been sick, so I don't know whether I have good veins, or how my blood counts compare now to some other then.

Just in case someone runs across this blog who has been recently dx'ed and knows as little as I do, here is how my pre-op testing went.

Upon arrival at the testing center, I was banded after the front desk person confirmed that the band printed had my personal information. I was then asked to fill out about 6 pages of forms which included medical history, doctor names and phone numbers, a release form and a promise to pay. After handing the forms back into the desk, they called my name. I handed my husband my bag and followed her back. As we approached the double doors, she asked if Leslie wanted to come with me. He did, so we were both led to an examination room by nurse practitioner Jane.

Jane's job was to ask lots of questions, most of which I had just answered on the medical form. Her first question was not on the form. She asked me to describe the surgery I was prepping for in my own words. Since I passed that question she moved onto asking me about my living situation. Who did I live with? And then she gazed at me and asked "Is anyone in the home hurting you."

[begin aside]

Okay... PROTOCOL CHECK!!!! You just invited the person who is statistically the most likely person to be hurting me into the exam room!

She continued. Has anyone hit you recently?

Let's me honest here. Leslie has never even considered hurting me. I like to think I would not be one of those women who couldn't leave. But, if these questions are important, shouldn't they leave the partner in the waiting room until after these questions are asked?

[end aside]

After the nurse practitioner was finished she left the room, and sent in the nurse who took my blood pressure [7 times!!!!], and then pulled out four large vials for blood collection. I must have winced because the nurse asked "You don't like needles?" I wanted to retort "who likes needles?" but instead I responded "I hate needles, but will simply look the other way." This didn't make our nurse happy. She turned to me and said "Should we lie you down now? Are you going to faint on me?" She asked in a total flat line voice. I thought it was hysterical, but I don't generally laugh at people with big needles in their hand so I only said, "I will be fine."

She found a vein in my right arm at the elbow and took all the blood she needed. Unlike previous blood takings in my life, this was nearly painless. She was very good at this.

I then had an EKG. I have never had one of these and I felt like an extra in a Spiderman movie. The electrodes have sticky stuff on one side and the connector on the other. Each electrode was about 3" in diameter. She placed one on each leg just above the ankle, one around each of my collar bones, and then five around my left breast. A brick [about 2x3x3] with tendricles was placed on my stomach, and each of the protruding wires was connected to an electrode. She turned on the base station and something happened. However, though it felt odd to have this octopus of wires on my body, I felt nothing from the test itself.

This was followed by a visit from the anesthesiologist. More medical questions and then a description of the procedure he will use. I will be sedated, so in medical terms I will not be asleep, but should not remember anything. He will start with a versed drip and then add propofol. The breast will then receive a local and we are off to the races.

Finally, I had a chest x-ray. Again, never had one. I was asked to stand facing a 3 foot by 3 foot gridded panel with my arms just so. Inhale, exhale, inhale and hold. And then she took the picture. I was then asked to stand facing 90 degrees from the panel, and another shot was taken.

Took about 1.5 hrs from start to finish. And it was easy!

Hair Today, Gone Tommorow

There are people out there who insist that I post pictures of the hair. [Chris, I won't tell, if you don't.] Now, I will not mention that these same folks aren't leaving comments. Nope not me. I am not a comment-hog.

First, the way I wear it on a daily basis. I tie back the hair to keep it under control:

And sans-clip:


I feel myself losing my conviction to cut, it almost looks good in these shots. But, I know it is the right thing to do. Anyone need hair ties, clips and barrettes? I have boxes of them!

Acts of Kindness

Yesterday was a full demonstration of the highs and lows. During the day, my good friend Sandi called to see how I was doing. And then she offered to bring dinner to the house on Friday, on the night of my surgery.

Later, I had a total meltdown dealing with a doctor, and ended up firing off an email to my primary which included the phrase, I kid you not, "I am not a happy camper." The issue at hand on the face of it seems small, but I felt so totally out of control. Let's face it, I have lost control of most of my life at this point, so it didn't seem too much to ask to have a pain prescription BEFORE the surgery as opposed to having it handed to me at discharge.

Who makes these rules? Okay.. you have surgery, they give you care instructions while you are still drugged and then send you out into the world where you have to find a pharmacy, wait for them to fill out the prescription, pay for it, a mere hours after having been drugged and cut. This makes no sense to me. So, I lost my balance for a few moments.

As I was making dinner, the doorbell rang. It was the UPS guy with a package from Shelburne, VT. Now, I know what is in Shelburne. Vermont Teddy Bears! I finished making dinner, and opened the package at the dining room table. It wasn't a teddy bear, it was a PajamaGram!

Inside the box was a decorative hat box. Inside the hat box were lovely, soft, lavender pajamas, a Do Not Disturb Sign for my doorknob, a lavender sachet and matching slippers. This has to be among the most sweet gifts I have ever received. Thank you Mary and Jeremy for thinking of me.

The hills of illness, all in one day. The best thing is that the good parts of the day are what I remembered when I woke up this morning. I am grateful to my friends for their acts of kindness.

Summer zucchini

We no longer grow our own green vegetables. We haven't had a real garden since we lived in Montana, and that was many years ago. We now specialize in tomatoes and herbs which is all our yard can accommodate. But, we are lucky enough to live near some very fertile farmland, and make the trip to our local farm often.

And the zucchini is in!

Our most common way of preparing the young and delicious vegetable is simply steaming and serving with a small amount of butter and lemon juice. But, lately I felt the need for something new and more adventurous. Here is what we came up with.

Serving for 3

2 small zucchini, thinly sliced
2 cloves garlic, minced
1 +/- pint grape tomato, quartered
olive oil
1/4 cup Parmesan cheese, shredded

Preheat oven to 425 degrees. Place 12" cast iron frying pan over medium/high heat while preparing vegetables. Drizzle olive oil so bottom of pan is barely coated and immediately add tomato and garlic. Reduce heat to medium. Stir occasionally so that the garlic doesn't burn.

When the tomatoes are starting to soften [don't let them get mushy], reduce the heat to low and place sliced zucchini on top of the tomato/garlic mixture. [You can make it pretty or just random, but try to create even layers.]

Add the shredded cheese in an even layer over the top, and place into oven. The zucchini is done when the cheese has browned nicely, about 10 minutes. If zucchini is done before the rest of the meal, just turn of the oven and let it sit until ready to serve.

Enjoy!

Myths About Breast Cancer

Over the past few weeks, I have taken a self-guided crash course in "Breast Cancer." The variations that this disease can create is astonishing. It is not a death sentence, but I have met some really sick women who are fighting with all that they are. I thought I knew a fair amount about this disease actually. My Aunt Kit, that favorite aunt we all have, died of this disease and so I have always made a point of reading anything in the media that related.

Tonight I offer, myths and reality:

1. Breast Cancer is genetic.
Nope. Only 5% of breast cancer patients carry a predisposition genetically. This is a fairly random disease [anecdotally speaking.] In the past two weeks I have met women who never smoked and some who have, who are in perfect physical shape and some who are obese, who have had babies before the age of 30 and nursed the babies for over a year, who drink like fish, who have never drunk, who never had children, or who had them late, pre-menopausal and post-menopausal, had x-rays as children and who were never x-rayed. Some women have been battered, while some have been well-loved. Some live in trailer parks, and some live in the most comfortable houses imaginable. Doesn't this seem random?

2. Women under 40 don't get Breast Cancer.
Slide over to http://www.youngsurvival.org and see how false this is. It turns out that lots of women are being diagnosed before the age of 40, but because they aren't being screened, or even worse, they are ignored by their doctors when they voice concerns about changes in their body, they aren't diagnosed until it is really late in the game! I weep as I read their stories. [Well, okay, I weep during those sappy coke commercials too.]

3. If your lump hurts it isn't Breast Cancer
May I present myself to discount this theory? If you have a lump, its size, shape and sensitivity isn't an indication of its status. This is what doctors are for! Go visit one.

Okay, I am tired of this entry, but I will edit it when I remember the other myths I have run across.

Hair

I have spent way too much time thinking about hair lately. I have lots and lots of hair. My husband likes to joke that I lose more hair per day than he has on his entire head. [As an aside, I think he is exaggerating!]

The oddest part of all of this is that I have never really liked my hair. It is very curly when it is humid, sort of wavy when it is dry, I never know what it might want to do, and I certainly have no control of how it looks. I have kept it long way past the appropriate age.

The trouble with having 14" of really thick hair is that you actually do have to wash it, and then get it dry. As I ponder being sick, I have started to feel that the hair is just too much work. When I need help showering, my poor husband is going to have to deal with something that takes me 20 minutes to clean and condition.

Then I get practical. I put up with having a really hot head in the summer because then I have long hair in the winter when it isn't so much trouble. But, this winter, I am going to be bald, so why am I dealing with this mane in the summer?

I am starting to think that my long and somewhat erratic hair is a way of stating who I am. I might be middle-aged, but I haven't lost my zest for life. Or something.

I have a hair appointment on Thursday. I am giving Kim carte-blanche to give me a 'summer' cut. I think Kim has been secretly dreaming of this moment for the 10 years she has been cutting my hair. But, not for these reasons. And so she can color, she can cut, she can razor and have a good time. And, if I hate it, it simply won't matter.

Maybe I should get a mini-cooper to make my youthful statement! At least I would know what that would look like everyday!

A Family Weekend

I have just returned from a weekend in Maine where we gathered with my husband's first and second cousins to celebrate Charlie and Ericka's wedding. We don't generally travel for a two-night get-a-way, so this was a special occasion.

Unfortunately, if it wasn't misting, it was raining, and then it would return to mist. The temperatures were unseasonably cold. In fact, we took our sweaters and were glad that we did. But, the point of the trip was to reconnect with family. Even though we are on the periphery of their family, they welcome us with open arms.

Ericka was very disappointed that the wedding needed to be held inside, but by some miracle, the sun appeared during the after-wedding photography session, so she will have lovely pictures of the day with the ocean in the background.

I loved seeing this branch of the family once again. But, I also love to return home. The tomato plants are getting bigger and the leaves are starting to expand, the basil is producing young leaves, and the thyme is spreading at will make a great ground cover. We are even getting tomato flowers, so there might be fruit!

For dinner Leslie rotisseried a chicken over cherry wood [debris from a winter storm.] We accompanied the chicken with the first corn of the season and locally grown peas. Lauren was inspired by some local strawberries to make a strawberry tart that rivaled anything we have eaten in Paris. The perfect end to a wonderful weekend.

Spreading the Word

As I indicated in one of my previous posts, I told no one about my possible breast cancer until after Lauren's graduation with two exceptions: my husband and my sister in LA.

I hated to make that call. She lives alone, well with multiple animals, but that is another post, and was in the throws of her own diagnosis. However, she is the family expert on the medical community, and I really needed her input. And I really wanted her to come East for the graduation. I wanted the whole family to be together.

So I called. "I need you." And the story poured out. This was early June, and my appointments were coming fast and furious. After talking for a while I said "See? I told you that the medical community moved faster here than in LA."

"Well, I didn't expect you to research this first hand," she replied. "Not on my account."

This isn't all about me

I am married. I have been married for 23, almost 24 years, to the same man. I just realized this week that I have known him for more than half my life and have been married for exactly half. That is quite an accomplishment. And if he asked me to marry him again tomorrow, my answer would still be 'yes.'

When we were first married, we were partners in everything. We performed together, we created businesses together, and almost every waking moment was related to our 'work.' We defined the 24/7 marriage. There wasn't much balance in the traditional sense, but together we were dedicated to our art. We moved around the country following the work. We began in Texas, moved to Montana where our daughter was born, and then it was onto North Carolina. For six years we moved around NC serving as visiting artists for the State. It was a wonderful life.

In a State that consistently voted for a man like Jesse Helms, it wasn't too surprising when our jobs were eliminated after the Mapelthorpe controversy. Once we sold our house, Leslie and I sat down and asked "where do we go now?" Our daughter would be starting kindergarten in the Fall, my sister was fighting cancer back home in Boston, and we didn't have jobs. Leslie said, "Let's go to New England. There is no place better."

Leslie is originally from Georgia. When I first met him, he didn't think he wanted to live north of the Mason/Dixon line, and yet our first job was 90 miles from the Canadian border. And here he was suggesting that we go North.

We moved North where I found work as an arts administrator. We were no longer the 24/7 couple, and our relationship was forced to change. We have adapted over the years, finding a new balance as we have grown older together.

Right now, we are living in a drafty old house that seems to leak water from both the roof and basement. I used to joke that I wanted to be taken out of this house in a box. Doesn't seem so funny anymore though. But I still have that sentiment. This is my house. It is where I want to live for the next 30 years.

Leslie and I approach many of life's problems differently. He deals with the things that are directly in front of him, while I project all the possible outcomes, sweat the things that might [or might not happen], and create lists. Most of the time, we balance each other. I become frustrated that he hasn't considered different outcomes, while he thinks I have expended energy needlessly.

However, what I know in my heart of hearts is that Leslie will be beside me no matter what. We may not be a 24/7 couple anymore, but we are in this together for the long haul. Neither of us is going to abandon the other if times get tough.

The next few months are going to be a test of our devotion, yet I have no doubt that we will come out on the other side intact.

For those of you I have never met in real life, here is the short version of what we do. Leslie teaches cello at several schools, performs with local ensembles, and restores and repairs string instruments from his home studio. Though I was an executive director of two non-profit music schools when we first moved North, for the past 8 years I have run a small database development firm and I continue to perform violin professionally. But the real money is in the database work. I love this work. Every client has a new and different problem they need to solve, I learn new businesses and I can arrange my schedule since much of my work is done from home. My schedule is both mother and family-friendly. We are able to eat dinner as a family each night taking an hour each day to devote to one another.

Maybe I will post recipes here. We are all good cooks in this house, and cooking gives us all great joy!

Who is this blog for?

I am torn by this question. I have many relationships with different people, all of whom know a different part of me. Some folks want a lot of medical information, some don't want any. Some folks don't get my dark cancer humor, honed while my sister was sick years ago, and some think that humor is the only way to get through this. [Generally, the humor folks have dealt with a sick friend or relative.]

So, do I filter this so I sound angelic and noble? Do I filter the information to make everything seem rosy? Or should I just write for me?

I am thinking I will write for me.

Susan's Preparation List

My list seems so dramatic now. If I had know how long this wait was going to be, I could have moved at a much more leisurely pace!

1. take pictures before losing hair
2. rewrite will [kid is now legal age]
3. make third floor small room into bedroom
4. arrange guest room as a recovery room
5. install air conditioners so I can be cool during recovery
6. find and buy pajamas
7. find and buy soft cotten button-down shirts
8. eat lots of lettuce before I can't eat raw foods
9. cut off hair, donate to Locks for Love
10. arrange subcontractors for business
11. find and buy slippers

Waiting

After the team meeting, there have been two follow-ups: surgery scheduled for July 15th and my first planning meeting with the oncologist on August 1st. That is it.

The waiting is driving me crazy. I am a problem solver, not a waiter by nature. I made all my lists, and now everything has been checked off. In fact, everything was checked off ages ago. And so I wait. And I just hate it.

Where I was so optimistic following the team meeting, I feel that I have slid into a funk now. It isn't that I am exactly looking forward to the surgery by any means, but I want to be doing something. And I want this thing out of my body. It simply doesn't belong there.

Wait. Wait. Wait.

This is Good News

The meeting with the team is actually good news, once you get past the breast cancer part. The night of the team meeting, my parents came to visit. My Mom was headed to LA to be with my sister during her surgery and they were spending the night here.

We served a masterful meal. Grilled tuna, brushetta, fresh pesto, tomatos, a green salad and fresh bread. We toasted my good news with a bottle of wine. We sat in the garden, my favorite place, and enjoyed the ocean breezes.

I meet the Team

The Breast Center is on its own floor of the hospital. It is quiet and serene up there. No blaring TV's, no over crowded waiting rooms. The chairs aren't that comfortable, or maybe it was me that was uncomfortable.

The center does multi team meetings on Tuesday and Thursday mornings. Three women are assigned to each session. The nurse-oncologist was running late and so she brought all of us to the other end of the center together. In HUGE letters over this area's entrance were the words Breast Cancer Treatment Planning. Somehow that was a home run. It hit me.

My husband and I are directed to an examination room. We sit in the chairs and await the first doctor. Each of the three women get their own room and the doctors rotate from room to room. The first 45 minutes are spent collecting family information, medical history, and examination and just plain old talking. We got Dr. Roger to start with. He will be my oncologist. I liked Dr. Roger. He took all of my concerns very seriously.

My concerns are really simple. At the end of this, I still want to be able to play the violin and I still want to be able to problem solve. I found the questions they asked fascinating. Had I ever had scarlet fever, pneumonia, allergies, and a lot of menstrual questions. There was a lot of discussion about family history. With my sister's ovarian cancer diagnosis and my breast cancer, he really wants me to take part in some genetic testing. It was then time for the examination. Lying on the bench, no lump, sitting up, lump. This is why Susan the Doctor didn't feel it. Then Dr. Roger did a teaching moment with the resident. He is a good teacher too.

At this point, we are excused for 30 minutes so that the team can meet and discuss treatment options.

My next doctor, in this rotation, is the surgeon, Dr. Mary Ann. She is one smart woman, and I immediately liked her. She has a daughter Lauren's age. She doesn't like drains.... but I am getting ahead of myself. Dr. Mary Ann wants to do a partial mascetomy, which other doctors call a lumpectomy and a sentinel node biopsy. Here is what she told me: the team can't agree on the tumor size. The range is 1 cm-2.2 cm. It is estrogen positive and neu2 negative. These markers are good things. Dr. Mary Ann looked me in the eye and said I would look the same at the end. I signed something that said that I understood that if she didn't get clear margins or the nodes were dirty, she would have to do a second surgery. This is a risk I can live with if the damage to my right arm is kept to a minimum. This surgery will be outpatient! I am astonished.

She will make an incision that allows easy access to a further surgery if needed, and will heal well. She won't leave me with drains. She says 'clear the calendar for a week.' I am clearing two just in case.

The last group to visit me was the radiologists. There were two of them, they are a team. Mostly they described the individual plan that each patient receives. Maybe I had hit overload, but these two folks didn't leave me with a huge impression. They did mention a protocol that I might qualify for depending on what size my tumor ends up being.

And at the end, the nurse oncologist came in to give the overview. My tumor is 1 cm - 2.2 cm, estrogen positive, neu2 negative. Program will include surgery, genetic testing, 6 1/2 weeks of radiation and then chemo. The exact chemo will be determined following surgery. I am told that Dr. Mary Ann's assistant will call to schedule the surgery.

June 13th, 2005

Monday morning I woke feeling anxious. Not so anxious that I didn't have my morning coffee though. I emailed Susan the Doctor. Thirty seconds later, she called. Susan the Doctor isn't one for many flowery words. "It is cancer. Call the Breast Center."

Not full of comfort or anything, but blunt and direct. I like Susan the Doctor.

And so I am on the phone to the Breast Center and talk with Susan the Center Coordinator. She is encouraging, and indicates that Susan the Doctor likes the multi-disciplinary approach. This means that I will meet the whole team on the same day. I am scheduled for June 21st, an agonizing 9 days later.

When Lauren woke, it was time to tell her. What did we tell her? We hardly know anything yet. So I told her that I was sick, but I didn't know how sick. She sobbed in my arms. When the sobs began to subside it became clear that we needed to lightened the mood. So I said "in the true fashion of this family, we wait until you are flying high before cutting you off at the knees." At least we could start dealing with this with some humor.

At this point, I am wondering how many Susan's I can have as part of my life. Not only do I have Susan the Doctor, and Susan the Coordinator, but I also have Susan the Photographer. As a family, we all went to her studio to have photos taken. Some of them are wonderful! We don't have many family photos, so before Lauren goes to school and I cut off all 14" of my hair, this seemed like the perfect time. We had fun together!

Graduation!!!!!!!

Lauren graduated from High School on the hottest day of the year. It was a brutal 93 degrees. But who cared??? She and ninety-one other students processed and were handed diplomas. She didn't just graduate, she did it in style! Good grades, good attitude, and acceptance to the college of her choice. I couldn't be more proud of her.

The ceremony began with an address from the headmaster, and then two faculty representatives. The students had voted for a faculty representative from each department and then they selected which teacher would hand them their diploma. Lauren chose Ava, her Capstone Advisor. Ava is leaving CSW next year to attend culinary school. It was actually a really nice ceremony. No where near as dreary as most.

My parents came down from New Hampshire and we all had lunch at our favorite Indian Restaurant following the ceremony. Afterwards they headed back to my Mother's high school for her reunion. We agreed to meet Sunday morning for a quick coffee.

What a totally lovely day.

Too Many Details

Wow. That last post didn't just meander down a side lane--- it crossed into another country! Maybe I will learn, albeit slowly, how to pare down to the essentials.

Wednesday the 8th came slowly, and I went in for the ultrasound which showed that it was not an infection [one of the options presented to me the previous Friday.] They then did a core biopsy, taking four samples. This was not a painless procedure, but the doctors were fantastic!

One thing about a teaching hospital, is that people are always teaching in front of me. My years of teaching mean that I really appreciate good instruction. I have actually found the 'teaching moments' to be very calming. Following the biopsy, I was given care instructions and these really cool ice packs. They are room temperature, until you smash them against the wall. Then they get really cold. Smashing things against the wall was good therapy as well.

I was told to expect the pathology results the following Monday, but in the meantime I had a graduation to attend and a party to plan. I filled my open anxious moments by creating lists. Lots of lists.

Mammograms & Radiology

My daughter is 19 years old. She is beautiful. So confident and sure of what is right and what is wrong. It wasn't always like this though. Not so long ago, every day was a battle for her. It didn't matter how hard she worked, or how hard she reached, where school was concerned, it was a losing battle.

Without getting to into the details, there came a day when I said "Enough!" It just didn't seem that a really bright girl who wanted to succeed simply wasn't. The local high school clearly wasn't the right place. We visited the Cambridge School of Weston, a local day/boarding private school. Lauren liked it and applied three months late. She was accepted, and then she did a really brave thing. She decided to repeat her junior year of high school.

Not every 17-year old would do this. In fact, most wouldn't. She didn't have to, but she did.

Lauren loved the Cambridge School in spite of, or because of, its quirks. She was in arts heaven. Though I wish she had spent more of her arts hours playing the viola, theatre and the visual arts won. However, the two years that she was at CSW I tried to participate in some of the musical events. One, this was a donation to the school, and two, I could entice her to play the viola if I was playing too.

I don't know yet if I will give her this blog URL, but I think she enjoyed it when her Dad and I took part in concerts at the school. In fact, she might even be proud. The final concert of her senior year had one rehearsal. Friday, June 3 starting at 2:30. See the conflict yet?

My husband and I headed to the hospital for the mammogram with our instruments in the car. My research indicated that I needed a half hour at the hospital. I emailed the conductor that I would be a few moments late.

All the x-ray patients check in at a long counter in a big open room. I gave my name and was told that I could go in 'over there.' The mammogram waiting room is segragated and has its own entrance. I left my husband in the larger waiting room and headed in. At 1:30, almost on the dot, my name was called, and I headed into the mammography room. They have digital machines so they can see the image immediately. This reduces [I was told] the need to recall people at a later date. I was given the standard four-shots and sent back to the waiting room. Ten minutes later, I was called back. They wanted more shots of that offending breast. I won't go into details, but this set of shots was very different. And back to the waiting room.

I was then told to dress and exit through a different room. The radiologist would talk with me. The radiologist, Valerie Z-F, was someone I would love to meet outside of a hospital. Warm eyes, good listening skills. She introduced me to the resident. As she began to talk, I found myself looking around the room. Dr. Valerie asked me not to since there might be information about other patients visible. "I am not looking at the room," I responded. "I am just not looking at you."

I had seen her eyes as she began telling me what was on the mammogram. I knew what she was seeing. She wasn't a very good liar.

They requested that I stay for an ultrasound, and I refused. If I didn't arrive at the rehearsal, Lauren would need [or demand] an explanation. I resolved right at that moment, that my daughter and my mother were going to have a joyful graduation weekend. There hasn't been enough joy in their lives, and I wasn't going to ruin it.

In the car, I told my husband that indeed, there was a tumor. That there would be more tests. From the car, I called all the appropriate offices to set up more appointments for Wednesday. I think I sighed, I might have even wept, but we made it to the rehearsal at 2:45. The kids hadn't finished tuning yet.