Still Wigless.....

but I have very clean feet!

Yesterday's second consultation at the wig store did not result in a wig. Clearly this shop serves many women well. They have grown year after year. They win Best of Boston awards regularly. They are written up frequently in medical magazines, especially about their alopecia patients. There are guest books filled with glowing thank you's from grateful clients. But for some reason, we just didn't click on any level.

It turns out when you are talking about hair, it is important to click. This is why we all have preferences about who cuts our hair, who sees us bald, and who helps us with this rather prominent feature of what we present to the world. So, I am looking for some wig store ideas, and welcome any comments if you know of one you like.

Lauren and I started the day visiting one of my clients. She sat in the lounge while I did some post-installation 'tweaks.' As expected, these tweaks only took about an hour, and then we were free to head crosstown for lunch and our spa day. Following a light lunch at a Thai restaurant, we prepared for pampering. I received a pedicure from Sandra, while Lauren was treated to a pedicure and manicure with Bella.

My feet were cleaned, rubbed, pumiced and massaged before she began an elaborate ritual of applying polish. Yes I am 46 and I have never had polish on any of my nails. I didn't realize that there were four layers of this stuff. First there is a clear base layer, then she added two layers of color [I was not wild, and went with natural], before applying a final sealer. Having my toes separated was an odd sensation, but I did enjoy the massaging and the pumice stone.

It was a lovely time together, and my feet feel very clean!

The Countdown

Lauren Move Out: 5 days
Susan Chemo: 8 days

I may have said this before. Preparing for chemo and Lauren's departure at the same time is really surreal. The best way for me to manage is to compartmentalize as much as possible. Most of the time this works.

My prescriptions are now at the local Costco, which is also not honoring their original price for Emend, but at this point, I just don't really care. The final price is in the $300 per chemo range which is laughable, except that I will have to pay for it.

The Wig saga continues this afternoon when I return to the Wig Shop and make a final selection. My Mother, and this is funny, said "Don't outsource your hair!" She wants me to be pampered and taken care of. So, I will return to the full service hair shop and let them do their thing which includes more pampering than I have done in a life time.

And Lauren and I are going for pedicures tomorrow, together. This is one place where the two sets of preparations can intersect. Lauren LOVES pedicures and manicures. I, on the other hand, have never done either. This seemed like a nice way to spend some time together while doing another 'pampering' thing.

I do agree with my Mom though. Now is the time to let people help and to take care of myself.

More Good Food

As if ribs weren't enough for one week, last night Leslie and I had another treat.

We were playing a gig on the North Shore in the quaint town of Newburyport. We arrived early enough to meet with the bride before the service, only we had been given the wrong address and the bride didn't really want to meet with us anyhow! So we followed the directions to a lovely park right off the ocean and set up our chairs and stands.

The published schedule was pre-wedding music from 4:30-5, then the wedding, some post wedding music and then pack up, go to the reception, re-set up and play until 6:30 pm. This is a fairly standard schedule for such events. But the bride and company didn't arrive until 5:30 so by the time we arrived at the reception, it was already 6:05. With set up there would be no way to play more than 15 minutes before that 6:30 time. As we entered the restaurant we could hear a piano and it didn't sound like recorded music. The bride had booked two sets of musicians for the 6-6:30 pm time and since he was already playing, we were free to go!

Leslie and I headed down Rt 1A in search of a clam shack. We have been talking about finding a good clam shack for several years, and this seemed like a good night for it. The weather wasn't too hot, or too cold. It was just the two of us, and we both felt that we needed to do something different and fun.

For those of you not from this area, the North Shore is known for their clams. In fact, to be specific, there are those that think Ipswich Clams are the best in the world. And as we crossed the Ipswich town line, there was the Clam Box. The building is made of cedar which has aged from years of sea salt, and the roof is fluted to look like a box opening. Hard to describe, and I wish I had had a camera with me to take a few shots.

The line was very long.... we waited 45 minutes to order. Leslie got the 'native clams' while I got the haddock. We both opted for mini-boxes since the platters we saw going by could feed most of Rhode Island! In the spirit of sharing, we got one dinner with fries, and one with onion rings. They were served with tartar sauce, and we requested lots of lemon.

Was this worth the wait? Oh YES! The fish was perfect. Flaky, tasty, and cooked perfectly. I haven't had fish this good since we ate at a road side stand in Peggy's Cove, Nova Scotia. And the clams? The best clams ever. I had a few of them though I really shouldn't, and Leslie enjoyed the rest. Totally the best clams ever.

By the time we ate, the sun had gone down and the mosquitos had descended. It was a challenge to eat the food with plastic utensils, while killing the bugs in the dark, but a challenge that I met successfully. The Clam Box is worth a yearly return visit.

[I found this picture of the Clam Box somewhere on the web, and so I offer it to you.]

Good Food

Over the past week, we have had a few meals that are worth relaying. I suspect that after reading this post, you will be salivating, so please don't read if all you have in your cupboard is some stale bread and a little Jiffy.

With the next tier of tomatoes just starting to ripen, we have had to turn to other foods for culinary inspiration. One such item is Bone Suckin' Mustard. We spotted this several months ago on the grocery store shelf, and bought it for that 'one-day.' That one day has come! One morning Leslie woke and proclaimed "RIBS!" Now this is a huge proclamation from a man who grew up in Georgia. It means heading to Costco to find just the right racks, hours tending a smoker, and at the end of it all, smoked ribs basted in a mustard based sauce are served at the table. Sometimes years go by between these proclamations, so this was exciting news.

In response, I made some home-made potato salad and some mint iced tea. We both spent hours preparing our portion of the meal. I threw some new potatoes into a large vat of water, and turned the heat to high. I then got to the business of making the vinaigrette and chopping/slicing the mix-ins. First I diced into tiny cubes both sweet and dill pickles and then I sliced the red onion into thin, long slivers. The vinaigrette is a simple white wine vinegar, olive oil, salt and pepper mixture, and I prepare this in a measuring cup. As the potatoes are almost fork tender, I place the raw eggs into the boiling water.

Once the potatoes are ready, I remove them with a Chinese spoon to roughly chop them into the master bowl. Once 1/3 of the taters are cut, I sprinkle and stir about 1/3 of the vinaigrette. More taters, more vinaigrette, and then the last taters are added. While this cools, I peel the eggs, and add them to the potatoes. Pickles, onions, Dijon mustard and country French mustard are all place on the potatoes, before adding just a little bit of mayonnaise. The eggs are cut into eighth's and added to the mixture. Then, I carefully fold all the ingredients so that the potatoes don't become mashed. Flavor to taste, and chill. This is wonderful stuff.

Since Lauren doesn't care for potato salad, or anything else with mayonnaise, I made her some home made French fries along with some broccoli to pretend that something was healthy!

We invited our friend Dave to come enjoy dinner with us [even though he should be working on his CD release] and he seemed to think that this was a meal worth eating! Dave has been a good friend over the past 6 months and we have promised him good food on numerous occasions. I think we delivered this week.

Tripping

Everything seems to be harder than it should be right now. My prescriptions aren't going through as expected, the wig markup is higher than it should be, and reaching for things hurts which always takes me by surprise. Everytime I turn around, I keep tripping over the cancer-thing. I am losing my patience with the cancer-thing, to be honest. I am starting to get mad at it; cancer is making my life just that much harder to manage.

Leslie has been wonderful, responding to my groans of dismay with patience and understanding. Still, I have had enough! And I haven't even begun.

No Wig Yet

An odd day at the Wig Store. It began rather well.

My 'consultant' was Katherine, one of the founders of the firm. We chatted about the original building, the murder of one of the nurses at that Planned Parenthood, and my sister. She asked some questions, and I gave her answers. I didn't really think she was asking the correct questions though. So I pushed the conversation in the direction I thought it should go.

I explained my two reasons for wearing a wig: presentations to new clients and concerts. Off she went to get some examples of hair all of which had traces [or more] of grey. Before trying this set of hair, I reminded her that since neither of my 'audiences' knew what I looked like, grey was not really something I wanted. Ah, she said, this makes it easier!

Off she went again. Okay, I always looked like me, but some of the wigs did make me look like I should be living in a double wide, some of them made me look like I needed a power blue suit, and some of them were for someone who's soul is much older than mine. One of the trailer trash wigs was a fabulous color. Almost auburn perhaps? But the cut was like Reba McIntyre. Oh, this wasn't a good look.

Eventually, I narrowed it down to two wigs. One is synthetic and one is all human. And all of sudden we took a left turn.

The wigs didn't come in the auburn. Katherine started using pronouns so I had no idea what we were talking about. We were being pushed hard to make a decision. Lauren and I both got tense. Katherine's next appointment was waiting, and we ended up scheduling a second consult for Tuesday.

All along Katherine had been saying not to worry about the cost. I assumed that this meant that she would charge what my insurance would pay, but at the end, she got to the prices and they are HIGH. So, I know what wig, and now know that it does come in this color. [The shop called me later in the afternoon.]

But, I haven't actually ordered a wig, time is short, and now I have to decide if the level of service offered by this shop [which is very high] is worth the markup. Unfortunately, Lauren and I were both overwhelmed and tense when we left the shop. Lots of things to think about before I am scheduled to return on Tuesday.

Wigs

Today is Wig Day.

Lauren and I are making a day of it. We will have lunch out, a rare treat, before heading to the wig spot. This shop specializes in hair for women who are sick. The original owner had Alopecia and wanted to create a safe and caring place for women to find hair replacements. The shop is now run by one of the daughters.

My friend Mary says that this shop is too expensive, and it may be. But I respect anyone who sees a hole in the market, and then fills it.

My sister, years and years ago, during her lymphoma fight, went to them. Like me, Margaret had all of her hair cut short before her treatments began, and it was really long! Then she and my Mom headed to find a wig. Back then this shop was located in Brookline, in the same building as Planned Parenthood.

Walking was already hard for Margaret since the tumors were taking over her body, and she held onto my mother for support. At age 28, she could barely walk 15 feet. As my Mom and Margaret approached the entrance of the building, they were surrounded by abortion protesters who assumed that this mother/daughter combination was headed to Planned Parenthood. Bullhorns were pointed at them and ugly words were thrown in their direction. Posters of fetus' were shoved into their faces as they tried to walk by. My mother and sister had to push their way through this mob of screaming and angry people.

Margaret remembers feeling assaulted. My Mother remembers wishing she had a bullhorn so that she could scream back at them "I would give anything for this to be about pregnancy." Since then, the hair shop has moved to a calmer location, farther away from town.

Each client has a 45 minute consultation. I have no idea how we will fill 45 minutes talking about hair, but that is the routine. Once the wig has arrived in the shop, they spend 1.5 hrs with you to teach cleaning, grooming and styling of the hairpiece. [Aside Alert! I have never spent 1.5 hours styling my real hair. I can't imagine doing this with a wig!] I am sure to do an update tonight after this meeting.

All those years ago, this shop treated my sister with dignity and that is the real reason I am returning to them. Another cycle comes full circle.

Tomato!

Yesterday we picked our first tomatoes! What a joy this was. The first tomato was a Jet Star and it was firm, slightly acidic and delicious. Since we were in full celebration mode, I made BLT's on toasted rye bread. Standard bacon, but the lettuce was a tender leafy green and well, the tomato, it was remarkable. Each bite of this sandwich reminded us that store-bought tomatoes that have traveled from a distant land are only a distant cousin to the home-grown variety.

Tonight we will be making pico de gallo, a favorite Mexican uncooked salsa.

Pico de Gallo:

equal parts diced tomato and red onion
finely chopped jalepeno peppers
finely chopped garlic
finely chopped cilantro
lime juice
pinch of salt

Stir ingredients together until well blended. Adjust ingredients as desired. Allow to sit for an hour to blend flavors.

Tonight's pico de gallo will be served with grilled chicken breast, rice and beans, perhaps all rolled into a burrito, or over a lettuce salad.

We keep any leftovers in the fridge for snacking. If for some reason you still have some left after a day or so, a pico de gallo and feta cheese omelette is an amazing dish and we highly recommend it.

Just Some Thoughts....

I don't really have anything to post today, but people actually seem to be reading this blog! I talk with these people on the phone, I hear from them via email, and a few even post comments. So, for my adoring fans I am going to just post some random thoughts.

Beth W., oh I do remember that concert of course. That was my first Boston Quartet concert. It was Post Office Square, and my sister, Dad, Leslie and Lauren all attended. Didn't we play that incredibly hard Haydn? I have photos which I should pull out and share with you.

Marilyn, getting her stuff home will be impossible! I have brought Lauren home from camp before, and somehow three pairs of jeans that take a small corner of the trunk going to camp, expand into a mass of denim that can't be contained within the entire trunk! Our only hope is that she will bring items she no longer needs home during her breaks. If not, Greyhound can carry her bags for us!

Gretchen, yup. I am a cool Mom. Even Anna [Lauren's friend] thinks I bought a cool, red blender. I carried that bag to a client office today, and I heard NO snorts. It held onto my shoulder well, even with a laptop inside. I was able to hold all the important client-type items, and look good doing it!

Staging Area

Our living room is spartan. It is a beautiful room with a fireplace, two pocket door openings, one leaded glass window, and four regular windows. There are two built in bookcases that might be original to the house. We have a futon in the room, a coffee table, and two Cuffs-Beautified chairs. That is all.

When Lauren was younger, she loved doing forward rolls, or somersaults as we used to call them. So for years, house after house, one room was left almost empty so that she had a place to tumble. Though forward rolls are no longer a daily part of Lauren's life, the openness of the living room pleases me.

The openness of the room has also become a magnet for The College Staging Area. Tucked into a corner are all the essentials of college dorm life: collapsible comfy chair, hangers, closet organizers, bathroom carryall, towels, sheets and underbed storage tubs. Soon, Lauren's whole life will be expanding out of that corner. She will add her clothes, quilt, bathroom essentials, more shoes than any girl HAS to have, desk lamps, computers, iPod, batteries, power cords, AC adaptors, mattress toppers, and desk supplies.

Twelve days from now she and her Dad will argue by the back of the car as they struggle to fit all of her stuff into the back of a too-small station wagon. Lauren will be irritated and cross, and her father will be impatient and tired. Somewhere there is a manual stating that the act of separation requires irritation or anger. Maybe it is just too hard any other way.

[I am in the minority in this house right now. I anticipate difficulties finding room in the car for 6 tubs and a duffle bag of stuff, plus the fridge and the chair and whatever else comes into the staging area. Of course, I think I will be correct.]

With 12 days left before this monumental event, I know that we are looking at a new family dynamic, a dynamic that may require some patience to establish gracefully.

Girls Day Out

Today, after my paper deprivation moment, Lauren and I headed north to New Hampshire for a day of shopping. Now for those of you who know us, you know that Lauren and I view shopping very differently. I am at best a reluctant shopper, while Lauren considers heading to the stores to be a mini-vacation.

So off we went, talking about the excitement of heading to school, parties she has gone to lately, and our list of must buys. Once in Nashua, we headed straight to Best Buy in search of yet another refrigerator. [We have a really nice 4.4 cubic foot one downstairs that we bought last week, but the college forbids machines larger than 2.5.] Lauren and I had done our research and had narrowed down our choices to a Sanyo machine at Best Buy or a Kenmore from Sears.

The Best Buy parking lot was a nightmare. Like locusts, the entire world seemed to be fighting for the one available parking spot. So we headed to the underground garage. Once in the store, we headed towards the refridgerator signs and discovered a display of compact models. And, our model was marked down $50! So much for checking more than one store. SOLD!

From there we headed to EMS to look at messenger bags, Office Depot for Lauren's favorite spiral bound notebooks. By now, we were both hungry and headed to find lunch. Now Nashua is not a gourmet destination. Most of the restaurants are either fast food or chains, but we selected a BBQ spot I had never even noticed before. Not a bad lunch and since we ate so late, it will also double as dinner.

A quick stop at Costco, and we had everything on the college list!

Lauren made fun of me for much of the day. She actually said I wasn't hip enough to have a messenger bag we found at EMS. I returned that I was the definition of middle age cool. I am sad to report that she snorted!

We had so much fun together. It is now all up to Lauren to pack all her stuff so that it will fit into her half of a 264 square foot room. This will be a challenge for my pack-rat kid!

In Memory Of...

The New York Times was not sitting beside the Boston Globe when we pulled ourselves out of bed late this morning. We are a two paper family. With only one paper to fill my coffee time, I read almost every word.

The obituary page had a 1/8 page picture of a young woman lying in a pumpkin patch. Her light colored hair, about shoulder length, was mostly straight with a touch of wave. She looked directly at the camera. She was beautiful and fully engaged. Her eyes were clear and smart. At the age of 39, this young woman was dead. Her cause of death: breast cancer.

I did not know her. But her story touched me, and so I am posting it here, in her honor:

Karen MacKay, 39; cartoonist noted for Vineyard calendar
By Tom Long, Globe Staff August 20, 2005

Karen MacKay was a cartoonist whose offbeat view of offshore life was illustrated in the 2005 Vineyard Wilderness Calendar. ''She had a very oblique way of looking at the world, " Douglas Cabral, editor of the Martha's Vineyard Times, said yesterday of Mrs. MacKay, who died of breast cancer last Saturday in her home in West Tisbury. She was 39.

Mrs. MacKay was Web manager of the Vineyard Times, as well as a writer and cartoonist for the weekly newspaper. Her cartoons celebrated the bizarre, such as an imaginary inn with special rates for relatives and surcharges for unexpected guests, and the Hopeful Diner, upon which the sun always shines. Cabral said her work was best illustrated by a cartoon called ''Affordable Lots," featuring a selection of cemetery plots, that lampooned the high price of island real estate. ''That cartoon shows how different she was," he said. ''Her humor snuck up on you and sometimes you were shocked when you found yourself laughing."

Karen (MacDowell) MacKay grew up in Rochester, N.Y. She received two bachelor's degrees -- one in illustration and painting and one in graphic design -- at the Rochester Institute of Technology, a master's degree in library science at the University of Buffalo, and a master's degree in fine art at Goddard College.''She was a fine painter, technical writer, and computer wiz," her husband, Jack, said yesterday. ''She figured if she had three or four things she could do, she could find work at the drop of a hat."

A quiet, self-effacing woman, Mrs. MacKay was a technical writer for Xerox Corp. for several years and assistant director of the Oak Bluffs Library for a year before joining the Martha's Vineyard Times staff two years ago.''She had a roving mind and was curious about life, " said her husband.''She was constantly reading and writing novels, poems, and stories."And she was a wonderful storyteller. ''She had a way of describing ordinary experiences with an unusual twist that made them sound like fairy tales," Amy Simcik Williams, online and supplements editor of the Martha's Vineyard Times, said yesterday. Williams said Mrs. MacKay's stories and infectious giggle enlivened the newsroom.

Last year Mrs. MacKay produced the Vineyard Wilderness Calendar, which features her cartoons.The calendar is subtitled ''12 Months of Living Local on Processed Insights."In the introduction to the calendar, she claimed to be puzzled at how she entered the cartoon business. " I don't know how I got into this," she wrote. ''One moment I was a realist portrait painter and the next I was drawing EZ Bake ovens and space trash."She said she drew her first cartoon in 1988 as a student at Rochester Institute while working part time renovating a farmhouse, rehabilitating two abandoned horses, and eating a lot of Pop Tarts.

When a friend suggested she break for lunch, they went to Burger King and her hamburger arrived without a bun. The incident inspired Mrs. MacKay to create a series of cartoons called, ''What really Happened: The Burger with No Buns." When she showed the illustrations to an art professor, he told her they were the most dangerous ideas she had had in a long time. ''I'm still not sure what he meant," she wrote in the introduction to her calendar, ''but stay away from fast food."

In addition to her husband, Mrs. MacKay leaves her parents, Kay and Ewald Schneider; and two sisters, Beth and Debbie.

A memorial service is being planned.

Clean!

Nurse Jenn has called and proclaimed me "healthy as a horse." [Well, except for that breast cancer stuff, of course.] All three scans looked good, and so there is a green light for chemo.

Today's RVG scan was uneventful. Nurse Rich took good care of me. I was again outfitted with an IV from which he drew some blood. My blood was mixed with a radioactive substance for a half hour, before being reinjected into me, again using the IV. He was able to pull out the IV at this point, and we went directly into the scan room. This machine had a large flat x-ray panel which was positioned three times, once for each scan. There were three electrodes attached to my chest during the tests. Thirty minutes later, I was done.

Just Another Day

Isn't that a wonderful thing to say? Today was all about cleaning up my follow up and to do list.

I started my day being to touch with both existing and potential clients. I was able to set up a slew of appointments between now and the advent of chemo.

I then called a fellow database developer who was diagnosed on June 1, 2004, just a year earlier than me. I had received an email from her welcoming a call from me. Even though she was packing for a two week vacation, she took a lot of time to discuss her dx, and to ask questions about mine.

It turns out that our diagnosis are almost identical with a few distinct differences. Barb's tumor was smaller, but she had positive nodes and had them all removed. We are both Stage IIa. But our treatment protocols are identical. She offered to send all her head coverings, some catalogs that she had collected, and to be an ear for the future. Barb is also a database developer running her own shop, and is willing to share some of the strategies she used to maintain her billable hours while in treatment. Unlike some of my friends, her journey through chemo and radiation was hard. I am looking forward to learning from her once she is back.

My circle keeps getting bigger. As Barb said "Welcome to Club C."

Two Down....

Well, hospital days as we call them here are always tiring. I am learning not to schedule anything else any day that I need to head over there.

We arrived at around 9:15 and headed toward the nuclear medicine wing where Nurse Mary Loveless inserted an IV. She then flushed, and did 3 injections. I was then free to head upstairs to the CT scan area where I was given 2 bottles of beri-smoothie. Trust me when I tell you, this is not something that will come out of my kitchen anytime soon.

The instructions indicated that the 2 bottles would serve me five glasses of this lovely barium suspension and that I should drink one glass per 15 minute interval. The final glass would be taken into the scan room with me for a final chug. Okay, this stuff is downright nasty and it doesn't get better as it starts coming up to room temperature.

The CT scan machine, made by GE Electric, isn't particularly scary. The room is kept somewhere between a freezer and a refrigerator and I was given a flannel sheet to cover my body during the scans. There was some concern when my allergy to shellfish was discovered, but once we moved past that I had one scan with the contrast dye and two without.

Left with an hour break and strict instructions to start drinking water, we took a walk to pick up drinks and a sandwich.

The bone scan was more of the same except that I was restrained in two places to the table so I was unable to move. The first scan took 20 minutes, and then the wait for a doctor to review the pictures. Yup.... they wanted more shots. This second scan concentrated on my torso. I snuck a peak at the pictures, and something was glowing. A few tense minutes of waiting before a doctor came and explained that I have significant degeneration of my upper spinal column.

This young resident wasn't prepared for all of my questions, and in fact, wasn't willing to answer. I did get him to reluctantly state that this degeneration could be caused by years of playing the violin.

It will be interesting to see what my 'real' doctors think about this spot. So, the bone scan doesn't show any signs of bone mets. The CT scan results should be available Thursday or Friday. I am not concerned though. These tests are a precaution. No one is expecting to find anything horrid.

Back on Thursday for one more.

Tests, Tests, Tests

This week is all about tests. I have received four approvals for the scans ordered by my medical oncologist. Tomorrow I start at 9:30 with an injection, and then I run down Brookline Ave to drink a nasty solution. An hour after drinking, I will have my CT scan. There will be some time to kill, but I will now need to drink water, before we head back to the first area for the bone scan. All told, we should be at the hospital for about 4 and half hours.

My Dad had a CT scan this year. He recommends sleeping during the test. He did, and didn't feel claustrophobic even a little bit!

Thursday I return to the hospital for the MUGA scan. Three tests a week seems like enough to me!

New Toy

Costco is a marvelous place. Each week there are about 20 sale items with prices that can't be beat anywhere! If you happen to want/need what they happen to have on sale, it is like hitting the lottery. Last week was just such a week.

With the upcoming chemo regimen, I felt that I needed a new blender. My current blender is avocado green and was a hand-me-down from my grandmother. That was in 1987. Who knows how long she had owned it before then. So this blender, though a fine machine in its day, isn't up to what I am going to need. Ice chips.

To reduce the chance of mouth sores, it is recommended that you suck on ice chips both during the infusion and for two days after. Some women find that the only thing they want to eat are cold frappes [milk shakes everywhere else in the world besides Massachusetts.] Cold is really good, and my avocado green blender is not up to this task.

And Costco had the top-of-the-line, ice-breaking-machine at-any-speed, KitchenAid blender on sale this week for a song. I bought a bright red one. It matches my stand mixer, a gift from my friend Laura when she was replacing it with a swivel head version, and they look very handsome side by side.

This has added a new component to my diet- Smoothies! We have been awash in smoothies for the last week made with yogurt, bananas, frozen berries and ice. Absolutely delicious!

Off for my walk which I have had to miss for the past two days since I didn't have a way to get to my Shaw's Supermarket and Spa. Already done 3 hours of work. Looks like another productive day in spite of the oppressive heat.

Groovy!

Following a late breakfast, I had the house to myself. Leslie was off playing two wedding gigs, and Lauren was at the pool working. I turned on some non-classical music, and finished last week's client file enhancements. And then I started a new project. This project is small and is just data modeling for an IT guy who is out of his league.

I still can't get back to the two onerous projects, but I am just not inspired to work on them. In fact, if I didn't have to work for a living, I would love to scrap all the work I have done, and start over. What I know is that if I did that, I would still end up at this point and be uninspired.

But, at least I was productive today in spite of the horrific heat. The rest of the day was spent doing some research, emailing friends and family, returning some phone calls, and getting dinner started. Maybe, just maybe, I have my groove back!

A Full Day

Today was my first full day client visit since my surgery on July 15th. I managed a 9-hour day [if you include the commute, which I most certainly do!] I am totally and completely exhausted from my efforts.

However, this client is preparing for the annual audit, and I must run the reports to document the yearly in/outflows. Generally, I spend one day per week at this client, but since they are a music school, I am going to take a medical leave. It seems dumb to go to a location which has at least 1800 people tromping through per week, most of whom are in elementary school and leave germs on every single door handle, while I am immune suppressed. So to prepare for this leave, I must get these audit reports completed.

The back edge of my node incision appears to be getting infected. We are trying a topical anti-biotic cream to treat it. Clearly, I would prefer that these incisions would just heal already. It has been a month now, and I am ready to be 100%! If by Monday the incision still seems puffy, I will need to call my surgeon and have her take a look.

For the first time since June, I had nightmares last night. Clearly, I am concerned about chemo through an IV and shots in my stomach. I am not sure how I can distract myself during the next few weeks, but helping Lauren get ready for college should be a start. Good news is that since I am so tired right now, I bet I will sleep well tonight. In fact, I am counting on it!

Teenagers!

There a lot of them downstairs. They have filtered in for hours past dinner time, but Lauren seems to be having fun feeding them all. Leslie and I went out to dinner, and are now hiding in our respective offices.

She has made fresh pasta, a lovely quick-cook sauteed tomato sauce with basil from our garden, and two pies [blueberry and peach.] Friends brought things to nibble on like salads, raw vegtables and dips.

This is the way the summer before college should be. Friends sitting in their parent's garden, drinking ice tea or soda eating simple but wonderful foods laughing at any and every single silly statement. It is a time to solidify existing friendships, and to look forward to making new ones.

Phew!

Nurse Jenn has written. The neulasta is indeed treatment if administered in the hospital, and will be covered by insurance.

Another anxiety moment has passed.

Astonishment

After posting about the cost of emend, I received an email from my nurse oncologist, Nurse Jenn. Nurse Jenn's email explained that though we hadn't discussed this at our meeting, she gives her patients the option to inject their own Neulasta shot the second day at home. She went on to explain that if I wished to inject this at home, I would need to obtain the drug from a retail pharmacy, and that it would cost --- are you sitting down? --- Three Thousand Dollars for ONE SHOT!

I need four of them.

She went on to explain that I could choose to come into the clinic to receive my shot from the nurses there. I am really hoping that by returning to the clinic, the neulasta will be considered treatment. Then it is covered. Since I had assumed that I would return on day 2, this doesn't seem like a hardship. $3,000!!!!

Oh my goodness. I am in total shock.

The Cost of Being Sick

We don't have prescription coverage. We dropped it on April 1st. Why? Well, it is really expensive. Since we are self-employed, we pay for our health insurance 100% out of pocket.

Each year, for the past three years, when renewal time comes around we have opted for less and less coverage simply based on the cost. Health Insurance has been going up 10, 15, 17% each and every year, but our income has not been able to match such a large increase. Is anyone in today's economy getting a 17% raise?

So to contain our overhead, we reduce our coverage. Now I am talking about keeping it cheap or anything, I am talking cost containment only. We spend over $10,000 a year for this coverage.

And so here I am sick, and I need drugs so I am shopping around. One of the drugs I need is called emend. Emend is a new release and is for nausea. For each chemo transfusion you need one three-pack. The three-pack has three pills which you take on Day 1, 2, and 3. My nurse oncologist warned me that these were expensive and to expect that my co-pay would be higher than normal. Her eyes widened when I explained that there was no co-pay, it was full-pay.

After my August 1st O-day meeting, I began doing some research and found that women on breastcancer.org were paying $282 for 2 3-packs! $282 to not throw up! Yesterday, I began to shop around, and here are the results of my research:

Costco: $207.99
Brooks: $239.00
CVS: $247.98
Drugstore.com: $181.33

Needless to say, drugstore.com has a new customer! I am really grateful to my doctors/nurses that they gave me enough time to price shop because the differences between these four outlets is huge and the drugs are the same.

Now if I was an insurance company, how much do you think I would be paying?

A Tradition Continues

I love to feed people! I make huge feasts and invite friends to join me. They will all agree that I tend to go overboard, but they do return time after time to enjoy the fruits of my labor.

Last summer I did a Greek Feast with grilled lamb, roasted eggplant salads, tztiki [spelling?] sauce, hummus, toubouli, pita breads and greek lemonade. Oh, there might have been even more food than that. At Thanksgiving, the table can barely hold the food I make, and stomachs are pushed to their limits. I do a traditional New England dinner so it must include squashes, creamed onions, tomato relish, baked beans in addition to apple/sausage stuffing, turkey, and potatoes. Lauren is queen of the pies and makes at least three including apple and pecan. The third pie is baker's choice and she has done a peach, a blueberry and a pumpkin.

For Lauren's graduation party we kept it simple with just burgers and veggie burgers, chicken wings, and about 5 salads. Enough for 40 people!

And now it is Lauren's turn. Evidently, her co-workers at the pool and friends have been hearing Lauren wax rhapsodic about her pasta dishes. So in a burst of enthusiasm, she invited them all to dinner tomorrow night, and now she is in shock. They ALL, every single one of them, has said they are coming! Pasta for 15!

Lauren is planning a fresh tomato sauce, fresh pasta from Capone's, and lots of parmeggiano regiano cheese. Friends will bring some salads and drinks to spread the cost around a little. Clearly, Lauren will be chopping onions, tomatoes and garlic for several hours tomorrow to prepare.

So we are headed to Costco to buy tomatoes and onions. Let the chopping begin!

Hair Prosthetics

Is that the oddest combination of words you can imagine? But in the world of insurance, semantics is everything. Insurance will not cover the cost of a wig, but it will cover a hair prosthetic. Now I know, and you know that they are indeed one and the same. I suspect that the claims reviewer also knows this. However, a prescription is needed and without this keyword they just don't pay.

In Boston, there is one place to go for a hair prosthetic and it has been on my list of things to do for two weeks, but only today did I call to make an appointment. To be honest, I thought I would call and be able to sachet in almost immediately. The first available appointment is August 24th!

Now I sachet with the best of them, and even I can sachet faster than that! Thank goodness Lauren and I have decided to make it an event that we share together. Otherwise, I would have waited much longer before calling and it would have been too late.

As it stands, I have an appointment on Friday, August 26th [a day off for Lauren] at 1:00 pm. The consultation lasts for an hour and a half. The follow up appointment will be even longer. Being sick takes time and energy at every turn. Oh well.... for the first time in my life I will have a clue what my hair will look like in the morning.

More Gifts

My friends Sandi and Beth [a different Beth, I have multiple Beths in my life] gave me the most amazing gift. They sent house cleaners to my house, and they cleaned. My house is clean and fresh. The cleaners were so warm and nice that having 'strangers' in my house didn't feel odd even at all. They worked like whirling dirvishes, and after two hours the house was gleaming!

Can you imagine a more thoughtful gift?

The rest of my day was just a day. Isn't that a wonderful thing to hear? I worked with a client over the phone doing some troubleshooting, did a Shaw Market walk, ate some lunch, more client work, a trip to Costco, a small nap, chat with a colleague, made dinner, more client work, helped a friend write a resume and cover letter, and then we ate raspberries.

No trauma, no anxiety, no medical appointments.... just a day. A totally boring day.

23 years and counting....

On August 7, 1982, on the steps of my parent's house in Massachusetts, Leslie and I were married before 100 friends and family. The day was just like today. The sun was out, it was crisp and clear, there was a slight breeze, low humidity and cool [for August.]

We pulled a permit to close the street to car traffic. My parents lined the sidewalk and front walkway to the house with the Persian rugs my great-grandmother Edith had brought home after traveling around the world. I didn't have bridesmaids. We chose to have our two Dads stand up for us as witnesses. The ushers included college friends and my brother.

As a brass quartet played, I did the walk and we did the full 'for better and for worse' vows. Each lesson of the service was read by a member of the family. It was an intimate and special day. I actually wore shoes for the service, but those were kicked off very quickly. My $125 dress looked great, but was not of heirloom quality.

After the service, we moved to the side yard and munched finger foods and drank lots of wine.

The cake was the best part though. We ordered an lemon cake from the bakery, a simple cake chosen for its taste. We eschewed any wedding decorations since that wasn't our style. Imagine the shock when a full four-tiered cake, with bride and groom atop was delivered! It turns out that since we were the first couple to choose a cake flavor for August 7th, anyone who wanted a cake for this day was forced to have lemon. Some poor couple ordered the frilliest cake imaginable, and instead got ours, the plain and simple cake. We laughed at this foolishness, but the other couple must have been devastated.

This weekend I even chatted with the first trumpet player in that quartet. Neither of us could believe that this wedding was 23 years ago!

This year we are fully investigating the 'in sickness and in health' and the 'for richer or poorer' portions of our vows. So far, our marriage has been strong enough to withstand all the challenges thrown at it. I expect nothing less in the future.

Our wedding was perfect. A simple combination of our styles, a joining of two people before those we cared most about. And the 23 years since this wonderful day, have brought happiness to us both. [Disclaimer: not every single day has been happy. We are talking averages here! :-) ]

Happy anniversary to us!

Back Home!

I did it! I played 8 hours of rehearsals and a concert, traveled the 3 hours both way, and slept in a horrid dorm cot and made it home safely!

Driving out to the concert with my friend Beth was very enjoyable. We never run out of things to chat about, and the trip went quickly. Upon arrival, it was time for lunch [make your own sandwich day] and check in with the orchestra personnel manager. Somehow he had forgotten to assign me a room, but had accidently given someone else two rooms. I was able to slip into that extra berth so that my roommate was a friend. Whoever I roomed with was going to need some explanations, so it was better that it was someone I know and like.

My fingers work fine while playing. The problems that I do have are about mobility in my upper arm, specifically opening up my armpit. I simply can't raise my right arm, opening up my body, without preparation. When you are playing a violin, there is no time for preparation, so the G string of the instrument is a challenge. Being a member of the first violin section for this concert meant that there wasn't much G string involved, and I quickly added some bad form to my playing to allow me access to the lower end of the instrument without opening up my arm. Several times, I forgot and I paid the price. Aspirin during the break between rehearsals was required.

Friday night a group went to a local inn for drinks. Since only two people knew about my dx, none of the conversation was about my 'condition.' And so we sat outside in the cool air telling stories, laughing, and enjoying each other's company.

In the middle of the first rehearsal a cold front had roared through with rain, lightning and lots of thunder bring the temperature from 97 degrees down into the low 70's. What a total blessing this was. When the storm hit Boston, Beth's dog panicked while being walked and ended up running 5 miles home, tearing up her paws. Basically, the poor dog had a total nervous breakdown. This news sobered the group on the porch. [The dog appears to be okay. Hoping for an update today.]

My roommate had tons to drink, getting louder and more boisterous. By the time we headed back to our room, she was flat out drunk. We brushed our teeth in the hall bathroom. She was faster than I was, and by the time I returned to the room, she was passed out. Changing was simple then. But then there were the beds....

This school recently purchased loft beds for these tiny little rooms. They hover over the floor, with ladders. But, during a previous week a musician had fallen off one of these ladders and so all the beds now sit on the floor. Four feet above the floor. And this was my first big challenge... How do you get yourself into a bed that high with only one arm, while wearing a nightgown that covers all your wounds? Thank goodness my roommate didn't see me trying this. It wasn't pretty at all. Imagine flailing up while pushing with the left arm. What a sight that would have been!

The only other great challenge was showering. Boys school, group showers, with no place near the actual shower to leave your towel and clothes. Showering was not optional after the heat of the previous day, and the fact that playing the violin takes some effort. I wasn't that concerned about people seeing me, I was concerned about how they would feel about seeing me. This falls under the 'too much information' category. So, I picked a very off time while most people were off eating dinner, and hung my stuff in the stall with me. It all got fairly wet, but it worked and I was clean for the concert.

It was a long drive home but L. got us there safely around 1 in the morning. She is in fact playing a gig with Leslie right now, and I suspect she will get even more thanks from him today. Leslie was relieved to have me back.

I am thankful to L. and Beth for all of their help with driving and carrying bags. I am lucky that the music wasn't more difficult so it didn't tax my bow arm. I am really happy to be home where there is a comfortable bed that I know how to get into, and really decent coffee.

Off.....

I am off for two days to play a gig in western Massachusetts. Yes, I am a little concerned about the heat and 5 hours of rehearsal on the first day. And yes, I am a little concerned about having a room-mate I don't know. And yes, I am a little concerned about the group shower area. However, both L. and B. will be there to help me with bags, guard the shower doors, and drive me both ways.

Saturday is a 3-hour rehearsal, then a concert. I expect to get home around 1am, exhausted.

I do love the Berkshires. Wish me well.

Brave New World

I have been meaning to post this for awhile now. The advances being made every month in the fight against breast cancer are amazing. Blood markers, gene mutations and genetic testing are all on the front edge of major discoveries.

This study has found ways to predict who will get lung mets!

I am in awe, and grateful, to the people who are dedicating their lives to this research.

Surgical Check Up

It is only 8:50 am, and I have already been to the hospital and back!

I was scheduled for an 8:00 am appointment with Dr. MaryJane this morning. This appointment was my surgical followup. In typical Susan style, I was 15 minutes early. In typical Dr. MaryJane style, she was 15 minutes early. So, we started early.

There was a hospital gown involved, but I didn't sit on the examination table. She simply looked at the incisions and remarked "Healing nicely!" She removed the steri-strips and we talked. She is slightly concerned about adding walking to my daily life, and cautioned against too much. "You are still a post-surgical patient," she warned. She became less concerned when I told her it was indoor and air-conditioned walking but did reiterate her "don't overdo" message.

I was given exercises to do, twice a day to increase my mobility. "Start slowly" she said, "10 reps to start, and only add as your are strong enough."

We chatted about chemo [she says Dr. Roger is fabulous and will keep me feeling good, but that isn't what Dr. Roger promised], sending children off to college, and when I need to see her again. [Right after radiation is finished, and then yearly after my mammogram.] She also said it was time to start buying Vitamin E caplets, slit them open, and put the Vitamin E on the breast and under the arm. She further explained that I will have a 'healing ridge' on the underside of my breast that will soften with time.

And that was it. She left, I dressed and headed to the waiting room. Just as Leslie and I were leaving the waiting room, she called us back. She had forgotten to ask about the blood tests. And, since we were both headed to the 9th floor, we chatted in the elevator about blood levels, and how she isn't very concerned but is glad that the CAT scan has been added to the protocol. Outside of the examination room, Dr. Maryjane is very lively and engaging, and much less business-like.

Since we finished so early, we headed straight home. Leslie and I both have haircuts at 11:30 and had planned a morning set of outings, but with this much time remaining, we both decided that home was the best place to be.

Lazy Wednesday

Today was a day to hide. I don't know why, but I just didn't want to answer phones, or respond to emails, or deal with the world at large in anyway. So instead, I sat on my comfortable chair in the office and read a book. A big, fat book which transported me to places very far away.

When I was a kid, the hallway outside my bedroom had a night light so the younger siblings could find their way to bathroom at night and so no one went tumbling down the stairs. I would lie in bed and wait until my parents went to bed, hear them rustling, brushing teeth, and then when the house was absolutely silent, I would creep out of my bed, pulling the current book from underneath my pillow and sit at the top of the stairs using that night light as a book light.

The last year of elementary school, I was given a special pass to go to the middle school library, since I had read just about every book in the elementary school library. In High School, my English teachers had to create alternative reading lists because I had read all the assigned readings years before.

In a way, this return to reading is a good sign, but it is also a way of escaping reality and responsibilities.

So, my darn markers [CA 29.27] are still high, and though it isn't a large concern, I will be scheduled for a CT Scan. They are using the 'better safe than sorry' cliche. As Leslie said, "One more thing to worry about."

I am starting to wonder if I will have any veins left at the end of all of this. The bruise in my left arm, from just one blood sample, is huge and sore. What will it be like after three tests and four chemos?

Chair No 17

Just checked my hospital's online site, and I have a reservation for Chair No 17 on Wednesday, September 7th, 9:30 am.

What is with the medical profession and all these early start times? Don't they ever sleep?

Dr. Roger Says....

There was no new information at this meeting about my cancer. All the data points are the same, since this is the first time I have been back to the hospital since my surgery.

More blood was drawn though, to re-run the CA 29.27 marker test. The assumption is that this time the number will be lower. If this assumption turns out to be correct, here is the drill.

Dr. Roger will reverse the treatments so that chemo will be first, followed by radiation. From what I can gather, and I could easily be wrong, the fact that my tumor was over 2 cm without node involvement and it was Grade 1, means that they want to do the systemic treatment first. The lack of node involvement is great news, and the team is pleasantly surprised. Once again, I don't fit into a neat box.

Dr. Roger is breaking the standard chemo protocol as well. He has chosen a protocol of 4 infusions, dose dense Adriamycin and Cytoxan. He is eliminating the Taxol which normally follows since he doesn't feel that the potential side effects, which include neuropathy, are worth the 1% survival stat gain. The day after each chemo infusion, I will need to return to the hospital for a Neulasta shot to encourage my white blood cells to reproduce, and further hydration if there has been vomiting.

To prepare for the chemo treatment, I will have both a Bone Scan and a MUGA test. The Bone Scan will give us a baseline [which will be needed for later treatments] and would find any mets [again that darn marker.] The MUGA test will confirm that my heart is strong enough to withstand the treatment.

My first chemo infusion will be September 7, 8 or 9th. This gives us time to get all the test results back, include additional tests should my markers still be elevated, and allow me to take Lauren to college on the 4th.

Taking Lauren to college is right at the top of the priority list!

Once the chemo treatments are done, I will begin the radiation sessions after a two week rest. For longer term treatment, Dr. Roger has selected aromatase-inhibitors which studies have shown to hold great promise for women like me.

Today we also met Nurse Jenn. She is another very bright woman, and she will actually be my primary contact person during all of this. She wrote all the prescriptions that I walked home with, including lots of anti-nausea drugs and a wig. She gave us a tour of the infusion room [bright, very white, 20 chairs with curtains] which I appreciated. I like having a visual in my head. She further explained that on chemo day, the hospital will send up a lunch and provide fruit, cookies and other goodies. There is a kitchen available for patients if they prefer to bring their own foods or drinks.

I can't tell you how nice and pleasant everyone on the ninth floor was to me, but I really DIDN'T WANT TO BE THERE!!!!! Pushing the number 9 in the elevator was another step towards understanding that I have a life-threatening illness. And that just plain sucks!