It's a Beautiful Day

As I write this we are at the boat, sheltered from the drizzle and gray skies. I really needed a change of scenery, and it has been almost two months since I’ve been on Curlew, so we decided to come for the weekend. Sun, Sun oh where for art thou, Sun? The weather in Philadelphia has been so dreary for so long, I pity anyone who suffers from depression. Thierry said it was beginning to feel like Amsterdam.

Speaking of Philadelphia, we have been caught up in the World Series playoffs. Yes, even Thierry who is NOT a sports fan has been eagerly awaiting the next game in the playoff series and wants the Phillies to beat NY. I too am excited, especially now, since I personally “know” so many of the players, having gotten their autographs in Denver. We had to seriously consider our trip to Baltimore since we have limited TV service on board. We do not have cable, nor do we have satellite TV – as do many modern boaters. We rely on the old digital TV box to deliver our service. We may even have to go to a bar to watch the games!

This past Wednesday I had the PT/CT’s and MRI’s that the doctor ordered. Fortunately I had a great technician; she was able to get the IV in the first time. For two of the tests, they had to inject a chemical during the procedures. All of these machines amaze me – what they do – how they are able to see inside your body and provide such detailed images of your bones and organs. I would love to have someone explain to me how these machines work – both the hardware and software.

The MRI was an open design – unlike the old machines that made you feel like you were in a coffin. They still make an incredible amount of noise. They give you headsets and pump in music to limit the effect of the noise. I requested some rock (jokingly) – which she honored – and played a U2 CD. The first song was Beautiful Day, which helped get me to my special place, which helped me cope with my final test of the day. (I’m making that my theme song!)

As you can imagine, my body was imaged from my head down to my knees. There was a lot of duplication in the imaging of certain body parts, but apparently, certain scans are better at providing views of certain organs. I remember one provides better images of the liver (I forget which). We’ll see Thursday what the verdict is.

For one of the scans I had to fill my lungs and hold my breath. For the MRI I had to breath in, breath out and hold. That was tricky! I was listening to the pounding coming first from the lower right side of the machine, then from the upper left side and at a different pitch from the other, trying not to count the beats (which to me was marking the passage of time), and wondering what would happen if I breathed before the little voice came on giving me permission. It was a little unnerving – I think it’s easier to hold your breath in than not breath. I began to wonder if this is what it feels like under water. Is this what it feels like to drown? I managed to push these thoughts aside, but was relieved when that part of the test was over.

I’ll probably be getting tested like this on a regular basis for a while. I wonder if I’ll get used to it. This was my week off from chemo. It is amazing how great I feel after a seven day break, almost normal. We’re going to take a ride down to Annapolis this afternoon, and maybe tomorrow we’ll visit a museum in Baltimore, the Walters, which I have never been to. Last night we went to the Baltimore Symphony and heard a wonderful performance of Scheherazade, Adams’ violin concertos (contemporary) and the Firebird Suite.

It has been a dreary week weather-wise, but overall a good one! If you need a pick-me-up, here’s a link to U2’s Beautiful Day: http://www.youtube.com/watch?v=u6FwEJwwYcQ

We Are What We Do

I have work. My friend just secured a contract for a consulting project and I will be working with her. It is an interesting project and most likely will be completed within 30-45 days. There is also a possibility some other work may come my way before year end.

When I received the news about the cancer, I had thought about whether or not I should continue working. At one point I actually said I would never work again. I keep remembering what the doctor at Fox Chase said, “Enjoy life, if you don’t feel like cleaning the house, hire someone”, which I did.

I really don’t know how much time I have (ok none of us do), yet baring the proverbial beer truck taking me out, my time is somewhat limited by the success of the drugs I am taking and the development of new drugs down the road. So the question is, how do I spend my time? Do I spend it working, or should I be thinking about all those exotic things people are supposed to want to do when they have a terminal illness? I mean if someone told you your days were numbered, what would you do?

One very limiting fact as to how I spend my time is the treatment itself. I am not sure how many more months of the 3-week cycles I will have to undergo (we’ll find out after we get the results of the tests), however, I will have to stay on the Avastin for the rest of my life – or until something else comes along. That means going for an infusion every two weeks. I recently read an article in the AARP magazine about a man diagnosed as terminal as the result of a brain tumor, who is being kept alive by Avastin. He has been on the drug for a year.

The bi-weekly treatments will prevent us (or me) from taking long trips on the boat like we have over the last few years, and we won’t be able to rent a villa in Italy for a month. Yes, we can still travel and do things, just not to the extent we like.

So, although I don’t have any desire to sky dive, I am taking art classes and will continue them; I won’t mountain climb, and I like to work – think, talk to people, and interact on an intellectual level. I think working – good work on a sporadic basis, is a good thing! And frankly, I can’t envision changing my life that dramatically. I like my life and want to spend my time enjoying those people in it – especially Thierry and Lauren and my friends.

It’s been another good week.

A Bit of Good News

Today I had the third chemo treatment of my fourth cycle of chemo. Things went pretty well, no reactions to the drugs, but did have a minor problem with my port. Initially the nurse could flush the port but could not draw blood. This is important since every visit they take out several tubes of blood to check hemoglobin levels, white/red blood cells, liver function and the bilirubin, along with dozens of other things - and I have virtually no accessible veins in my arm. If the result of the testing areas named above are too far outside normal ranges, they will not administer the chemo.

At any rate, my wonderful nurse, Carol, who has been GONE for two weeks, printed the test results for me and graphed the tumor marker report. My levels have gone down to 35. The "normal" range is 0-30!

A tumor marker is a substance (protein) that is produced by the body in response to cancer, or is produced by the cancer itself. Some of these markers are specific to one cancer, while others are seen in several types of cancer. These markers are generally used to evaluate the patient's response to treatment or to monitor for recurrence (return of the cancer after treatment). Some markers can help physicians to determine prognosis and treatment.

The CA 27-29 is a tumor marker that is most often used in people with breast cancer. In metastatic cancer, the CA 27-29 level does not ever go down to zero, but it can dip back into the normal range (0-30).

Keep your fingers crossed (and ask whatever deity or god you pray to) that my CT/PT's and MRI's reflect the same results next Wednesday!

Today was a very good day:)

The Art of the Stick

When we flew to Denver I took along a three-day supply of primed Neupogen syringes which I had to self-inject. Lauren offered to do it for me since she became an expert as part of her diabetes training. For those of you who don't know, Lauren is a representative for Bayer selling diabetes monitors. For a former employer she also sold needles and test strips. The sales reps were required to have a complete understanding of what the patient was experiencing, so she became proficient at self-injection – Ick! Great idea – but still a big Ick!

I declined the offer as I felt it was necessary that I get a grip – be a man – and master this myself. The first decision one must make when injecting yourself is determining where to do it. I had been getting my injections in my thighs upon recommendation of Thierry and a nurse who administers my Vitamin C. These are subcutaneous injections, meaning under the skin as opposed to intramuscular or intravenous. You just grab onto a fatty piece of flesh and jab. One thing I don't lack is flab, from my mid-drift down to my knees! I decided to continue to use the thighs.

One of the first things I noticed is that these needles aren't as sharp or as fine as the ones in the infusion center – so it really requires a firm push. This is when the eeeuuu factor kicks in. You pinch a bit of flesh, clean the area with alcohol, then inject. You have to be sure the needle goes all the way in, a half inch never looked so big! At this point sweat starts to build up. Then it is just a matter of pushing the plunger without pushing the needle out – this takes some concentration, and a very steady hand. This is when I start my breathing exercises.

The whole process really only takes a few minutes – not counting the getting up the guts and huffing and puffing time. Day one went really well. Day two hurt like a son of a bitch. I let out a litany of four letter words in between ouches! Lauren came to the conclusion I was pinching the skin too hard, and strongly suggested I move to the stomach! So on day three, I moved to the tire around my middle and it all went pretty smoothly. Now the only thing I have to work out is the angle of the stick. The nurse said 90 degrees – Thierry says 90 degrees – I personally like 45! I am not sure what, if any impact it will have to inject at an angle – the 90 degree thing creeps me out a bit.

Last night was my fourth injection, again in the stomach, and, it went pretty well; however, I really don't think I'll ever get over the initial dread factor and the need to tell myself that this is good for me. This is a small price to pay for an increase in white blood cells and less time spent at the infusion center.

It has been a busy week. Thierry is back from trip to Baltimore and Annapolis. I never realize how much I miss him until he gets home! My sister got married yesterday – a lovely ceremony in her home. It is a very gray day which will we spend at the opera – Madame Butterfly, then dinner with friends. Notwithstanding the leak in the bathroom and clogged sink in the kitchen, it has been a good weekend.

Friends

I am fortunate in that I have many wonderful friends in my life. True friends. People that take me for who I am, and are there for me at my most difficult times – as well as the good.

As you know, I spent last weekend with two girlfriends and my daughter in Denver. Lauren made the transition from daughter to friend a long time ago. We share some secrets, although I think she knows where to draw the line – the mother thing rears its head every once in a while. We really have fun together, she makes me laugh – she has a wonderful, quick sense of humor. Thierry and I double date with her and Mike, and have a great time. We talk to each other a couple of times a day on the phone. She is always there for me, and I hope, I for her.

Ann is a fairly new friend and also a co-worker. We work on projects together and use each other as a sounding board when trying to work out professional dilemmas as well as personal problems. We met about 7 years ago or so, through a mutual acquaintance, and got to know each other by working on a non-profit board together. We are different in so many ways, from how we approach a situation, to how we react emotionally to events, to our size and coloring. But we are able to pull on each other's strengths and express ourselves without taking offense – there is no competition between us – just mutual respect. As they say, it is good to find “new” friends along the way, otherwise you may be very lonely in your old age.

Barbara and I have known each other since childhood. We were trying to remember when and how we met. When we grew up there were tons of kids in the neighborhood. Several of my girlfriends had brothers the same age as my brother, David, who is 19 months older than I, so often we all played together. We rode bikes around the neighborhood, played baby-in-the-air, monkey-in-the-middle, and 4-square in the driveway. It usually went well until someone called me bird... which necessitated my lashing out – one time slapping Jed Miller square across the cheek! He wasn't happy.

Barbara and I decided we probably met in 4-H (I may have been 8 years old). I think it's still around – “I pledge my Head to clearer thinking, my Heart to greater loyalty, my Hands to..... and my Health to....”, I forget the rest. The 4-H was started to provide hands-on learning to children and was concentrated in rural areas. Out in the country, 4-H'rs are involved with raising farm animals, as well as promoting other wholesome interests (skill building) to bored youths . All of us kids had to pick “project(s)” to work on. Because my dad had a huge garden in the backyard, I picked flowers and my brother selected vegetable gardening. It didn't end there. We also picked electricity (???) and I had sewing. The only thing I'll say about the sewing is that to this day, the only things I can sew are hems and buttons. (We had to make something from scratch – mine was a skirt which I never wore). Barbara also did sewing and I believe flowers, although I have a vague memory that she grew strawberries as well.

Barbara lived about two blocks away from us, down the street and around the corner. The corner was often our meeting place. That was where she gave me the shocking news that her parents had separated. I couldn't believe it, as that was something you rarely heard way back then.

Her mother became my adopted mom, cooking bacon and eggs (cooked in the bacon fat!) for all of us in an electric frying pan on Sunday mornings when I was supposed to be in church. We partied quite a bit in that house... along with my brother and Barb's brother Steve, but that is a whole other story, which may never go into print. Barbara is terrific about remembering birthdays, sending cards, etc. I am not!

Although the depth of friendships don't depend on the length of the acquaintance, I find it amazing that my friendship with Barbara has lasted almost 50 years and has withstood time, marriages, children, illnesses and 3,000 miles of country between us. We have that “connection”, and I am sure that we will remain close for the rest of our lives.

To all of my friends, thank you for being in my life.

Today it is cold and rainy in Philadelphia. I am busy killing cancer cells at the infusion center – and today is going to be a great day!

More from Denver

Just thought I'd share our view... we awoke to snow and temperatures of 19F. We have decided to stay in today - until tonight when we go to dinner and the show.

More Philly spottings this morning. This place has a great gym and lap pool. We all got a good workout then had a leisurely breakfast.

Feeling very good....

News from the Mile High City

Well, we landed in Denver a little over an hour late, but found sunny, cool weather. We actually landed within minutes of Barbara and caught up with each other in the terminal. We arrived at the Ritz Carlton to find that our room (Lauren's and mine) wasn't ready. We decided to camp in the other room - which is a connecting room to ours - until the room was finished. When we got there, we found that the room was also not ready.

Back to the lobby where we subtly mentioned that we were surprised the rooms weren't ready by the 3:00 check-in time. The receptionist kindly offered to treat us to drinks at the bar. A very nice bar as a matter of fact, with excellent Parmesan french fries! When we entered the hotel, Lauren asked if the Phillies were staying here. The gentlemen responded that they could not confirm nor deny the question. Barbara asked the receptionist when she came to tell us our rooms were ready. She gave the same reply, indicating that the privacy of their guests is of utmost important. She did say that if any of the Phillies ask if Ms. Bruce or Ms. Gruenwald were here, she would tell them that was an affirmative (haha).

As were were sitting in the bar, Lauren made her first Philly sighting, Victorino. She sprang from her seat to go to the lobby to see what was going on. Apparently the Phillies began to arrive en mass. After a time we left to go to our room. On our way out two Phillies walked past us and took our seats at the bar; they were Worth and Utley. Lauren's heart started to palpitate. I suggested we go in to talk to them, which we did. We asked if we could take a picture, but Worth grunted that he didn't do pictures. We wished them well, anyway, said we were routing for them and left. On our way up the elevator, we saw yet another Philly, Lee, but we said nothing. Well, it looks like it will be an exciting, if not relaxing weekend.

I probably won't write anymore until we get home as the Ritz actually charges for the Internet access (9.95), which I think is outrageous, but felt this was newsworthy!

We are looking forward to a spa day tomorrow as it will be in 30'sF and they are calling for snow showers. Only Lauren brought her Uggs. We are also going to a comedy show tomorrow night. Maybe shopping on Sunday? We'll see.

Today was a very fun day.

Infusion Music

I am sitting on my perch in the infusion center, being serenaded by a guy energetically strumming his guitar, playing religious folk music while his wife (?) is being infused. He started out slowly, and quietly, but has now built up into a spiritual frenzy. In listening to a few of his songs I deduced they were religious tunes, but upon returning from my trip down the hall, I saw his hymnal on the little desk we all have in our infusion cubie. He is on my left. On my right is a little guy with his TV blaring. I am not sure which is less annoying.

The infusion center, compared to what I am used to, is actually pretty nice. The center takes one floor of an older converted office building on Chestnut Street which was recently renovated (used to be the Federal Reserve Bank building), so everything is new. It is a large open room surrounded by windows on all sides. It covers the entire floor – but is separated into two parts by the reception area, elevator lobby, check-out counter, and waiting room. I am generally in the more open of the two areas which is usually okay when it comes to noise level, but it can get pretty loud.

Cubes cover the perimeter, with two back-to-back rows of cubes in the center of the floor. On the other side of the floor (beyond the reception area), the cubes along one wall actually have doors, the opposite wall houses lab techs. Unfortunately, I have only been on that side twice and in one of the enclosed spaces. The regular cubes don't have any doors. They are fairly large, with chest high walls on three sides. Each cube has the “comfy” chair for the queen (or king as the case may be), a guest chair and a rolling chair for the attending. There is a little desk top, and each cube has a television. Each cube also comes with a curtain, which you can arrange to block the front opening, it just reduces the size of the cube.

I think the televisions are a nice idea, as sitting for five hours or more can be pretty boring – especially considering that most of the population doesn't read – not even a newspaper (although there is one older women who comes here alone and reads 4 newspapers a day). The problem is most people put the darn things on very loud (or so it sounds). How do you say something to someone who is experiencing a similar problem as you and getting similar drugs? I mean, the TV watcher is sitting in there by himself – having arrived around the same time I did. We've been here for 4 hours now, and who knows when we'll be sprung. At least I have my laptop, my iPod, book, newspaper, newspaper puzzles, and my Thierry (who is now getting my lunch). Really, what do I have to complain about!

No, I won't say anything to anyone, I'll just try going with the flow. But if the center ever sends me a survey, I will suggest that they either require headphones or ask people to keep the volume down.

I saw my doctor today. She told me that the cancer marker tests showed another reduction, we're down to 75 from a high of 400! Good news! She also gave me a script for the MRI, Pet and CT scans. (lunch break over, the music started again!). I am anxious! Can't help it.

However, I leave tomorrow for Denver with Lauren, Ann and Barbara (coming from SF) and am planning to have a great time. We are flying into much colder weather and in the middle of the Phillies-Rockies play-off series. Go Phils! Who knows, maybe we'll get to see them win in Denver – wouldn't that be nice - and celebrate at the bar in the hotel with them!!! Thierry leaves tonight for Baltimore, then onto Annapolis for the boat show. I think he'll have a great time, too!

It's been a great day – and going to be a glorious weekend – I'll write again Tuesday, unless of course, something really crazy happens....

The Inevitable

Tomorrow I turn 55. I see this as a major milestone. A few months ago I didn't think I'd be alive to see it. Of course, I am already thinking about turning 56!

We had a great weekend. Friends visited, we had a party on Saturday, dinner with the family in Philly on Sunday with a great chocolate cake. Today I had a minor meltdown.

I was reading in a breast cancer newsletter about Parp inhibitors, the next breakthrough in cancer treatment. It is supposed to work well on triple negative tumors and on patients with one of the breast cancer genes. The tests result show it extends life from 5 to 12 months. I don't know exactly what that means, but it still doesn't sound so great.

After reading the article I became anxious and all I could think about was dying. I tried to keep busy, but couldn't shake my apprehension. I went to my sister's tonight for healing touch. During the session I decided to look objectively at death. We are all dying, some of us will die before others. It can happen at any time in all kinds of different ways. The only thing we know about for sure is what is happening now, at this moment.

So, in my 56th year I am going to concentrate very hard on surrending to the fact that I (we) am going to die, and stay focused on the moment, because that is all we have and the only sure thing is what is happening now.

Today was a beautiful day, thanks for sharing my little life.

Where There's a Will

Do you all have wills? Thierry and I have been redoing ours. We had wills and medical powers of attorney (or is it medical power of attorneys?) drafted when we moved to Philadelphia. We knew we were committed to the relationship, and felt it was important to have things spelled out once we jointly owned property. I was especially concerned if one of us became suddenly ill.

It happened to a friend of mine and some difficult decisions had to be made quickly. Children were involved (from a previous marriage), but because everything was plainly spelled out, there were fewer problems. Not something that one should have to think about at the time a sudden illness or injury occurs.

My late husband and I had wills written when he was in the hospital with a terminal illness. The lawyer pulled it together in two days. It was a pretty frantic time as you can imagine.

Thierry and I chose to use an attorney rather than draft our own. I am sure we could have done this ourselves, and even more convinced we probably should have after re-writing what the attorney or his assistant obviously pieced together from other people's wills. I fully intend to let him know about this when we get the bill.

There's a lot more to think about than just who get what statue. Do you leave money to charity? What about family members? And then, how do you calculate amounts? What if you spend what you thought you were going to leave (meaning you have to monitor your estate regularly)? Do you set up trusts? If so, what are the tax implications and who do you pick as trustees? Then do you tell the trustees you selected them as trustees? Of course your attorney should advise you on all of this – ours has not been very helpful. I actually learned more from a friend who recently settled her father's estate.

I never was put off about creating a will - I always thought it was a good thing to do. Some folks think it is eerie, to plan for your death. Ohhh, I forgot to put in there what is to happen to my body when I pass on.... Do you put that in a will? Also, I want everyone to have a party and get good and drunk – should that go in as well? (Now you all know - make sure it happens!)

Wills just make death a little easier for those you leave behind.

I'm not going anywhere too soon (I hope), because these days have been very good, and I want to enjoy a bunch more, just want to be prepared.