Monday, December 28, 2009

Christmas Season 2009



Christmas has passed and I am only just now sitting down to write. I’ve been thinking about what to write for days, but in between getting ready for meals – and eating – I’ve been pretty much lying on the sofa or bed with heating pads and hot water bottles, quite lethargic.

It really has been a very nice, joyous holiday. On the Wednesday before Christmas we went with our friends, Kirk and Lisa, to the Italian Market in South Philadelphia for breakfast and shopping. We went to the “wild” game purveyor and purchased some venison – as we were planning a venison stew for Christmas. This I kept secret from certain members of my family as I thought they would be predisposed not to eat it!

It is always fun shopping at this outdoor market during the holidays. If it weren’t for all the Asian vendors it would feel rather Dickensonian. It was cold that day, and the fires were going in the trash cans behind the vegetable stalls. We stopped in another of our favorite stalls to pick up provolone and pasta cheeses, then went over to the seafood store to buy fresh little neck clams and chopped clams for Christmas Eve dinner.

On Christmas Eve we put together a simple dinner of spaghetti and clams and salad. Mom’s neighbors joined us, as did my brother and his family. Joan and I made a terrific white clam sauce – and she made her killer garlic bread. Earlier that day, Thierry and I put together our venison stew. It was Thierry’s idea to make it the night before – and he was right – sitting overnight enabled the flavors to blend, and if I say so, it was a tasty meal. All but one person ate it, some even had seconds!


Again, our Christmas meal was simple, starting with a salad, then the stew, followed by delicious fresh made applesauce (by Lisa), topped with vanilla ice cream. Joan also made her famous chocolate cake. We began the party with stuffed mushrooms made by Ann, asparagus and nuts by Jean, and absolutely delicious dumplings made by Koniko.


Last night, Sunday, we had our 4th annual family wine tasting; a tradition begun as an alternative to inter-family gift giving. Lauren and Robert (famous wine-guy from one of our local state-run liquor stores) chose a wide selection of domestic and imported wines. We began with a sparkling white from California, a white California Viognier blend, and reds from Argentina, Spain, and France. Everyone (each couple or individual) brought an appetizer and a cheese selection.

Each of these celebrations can be characterized by the same ambiance. A general feeling of (relative) calmness prevailed (which is unusual when a big crowd of Italians and sisters get together). Missing were the frantic, rushing to get the food on the table gyrations that normally take place. I don’t think anyone felt overworked. Everyone pitched in, both in getting things together and in the clean up, and everyone seemed to be engaged in conversation, laughter, and in having just a plain old good time.

I don’t know if I speak for myself, but I must say it was a wonderful holiday, especially when surrounded by my terrific family, great friends and loving husband.

Holiday Wishes


Christmas got away from us this year. We had hoped to make our own cards again, but unfortunately, couldn’t find an appropriate photo. We then pulled all of the cards purchased at end of season (over the years) and still sealed in their boxes, and other left-overs from previous years. Thierry pulled together his mailing list – I didn’t get that far. We sorted all of the cards on the floor of the office, but alas, that is where they stayed.

So, we would like to now wish all of you a terrific holiday season, and a New Year filled with everything special to you, and may you find fulfillment in all that you do!

Monday, December 21, 2009

What Condition My Condition is In


Thierry says I should write about what ails me, as that is one of the purposes of the blog - to keep everyone up-to-date on my “condition” - so be forewarned, this will not be one of my more cheery postings.

In general, I have felt pretty good I guess. This chemo has not affected me like in the past, when I was curled in a fetal position on the sofa for two days afterward. I have been pretty functional. What has been developing over the past several months is a chronic sinus condition that has me very grumpy.

Two days following my treatments, my sinuses seem to dry up, and congest, and run, and I wake up with incredible headaches. These conditions last several days. I am able to put up with a lot of discomfort, but this has really dragged me down, emotionally as well as physically. I have been trying some homeopathic remedies like NetiPot, steam treatments from a pot filled with hot water and Vicks or chamomile flowers, and saline spray, but not with any regularity. Last week my brother-in-law gave me a bottle of Fluticasone (a steroid spray), which I really believe saved me last weekend, and has made the condition bearable.

Today I had an appointment with an ENT (Ears, Nose and Throat) specialist. His conclusion was that my sinuses were aggravated by the chemo and they are dry and crusty (great image here). He gave me over-the-counter remedies: an ointment to moisten the sinus passages and saline spray 4-6 times a day – basically anything to keep the sinuses moist.

I have also experienced some very odd phenomena that I have yet to have explained. Saturday evening, after enjoying an afternoon of tree decorating and the company of several of our friends at our house, my glands started to swell and I developed a very sore throat – all of which disappeared on Sunday.

Sunday, while sitting in the oldest Catholic Church in Philadelphia listening to a Baroque concert, my left wrist started to hurt. Later that evening while attending a dinner party at a friend’s house, both wrists swelled and ached to the point where I couldn’t bend them. Thierry had to help me undress that evening. Isn’t that one of your worst fears – having to have help undressing – and not in a romantic, sexy way! Anyway, they were still swollen and painful this morning, although not quite as bad. A phone call to the nurses at the oncologist office proved unhelpful. Her first reaction was to ask “Have you gone to the emergency room”? How stupid was that! Not to be deterred, I stopped in at the infusion center after I got my Vitamin C infusion.  My nurse got the Nurse Practitioner  who confirmed that joint swelling is a side effect of the chemo, as are swollen glands.  No need to go to the emergency room!

So, if you were able to read between the lines, I’ve managed to live and enjoy friends and the season, while dealing with some inconveniences and discomfort. I guess that is what it is all about – focusing on all the good parts of the day, because each day I am alive is a good one.

Thursday, December 17, 2009

The Eyes Have It

For the men who read my blog, this one is for the girls.

Well, it happened. I lost almost all of my eyebrows. I only have a few stragglers hanging around. I actually went and bought fake eyebrows – a friend of mine found them on the internet. I haven’t tried them on, not since the fiasco with the fake eyelashes. My eyelashes disappeared first, and one afternoon while getting ready for a party, I made an attempt to get them on. Of course we were bucking up against the clock and Thierry was pacing. I got extremely nervous and made a mess of it. (Thierry’s fault obviously!). Okay, not Thierry’s fault, I should have practiced. I don’t know why I thought this would be easy. Finally I pulled them off and suffered through the afternoon with goo sticking my eyelids together.

It took me a while to realize what was wrong. When I would put on my new wigs and look in the mirror I looked washed out. I put on eyeliner, and it helped a little. Then I started to use a darker eye shadow, and that helped a little more, but still something was missing. Then one day it dawned on me – no eyebrows! I went to the store and searched high and low for brow pencil. You’d be surprised to learn how difficult it is to find – most drug stores had shades of brown. Finally I found black.

Did you ever try to paint on eyebrows where there are none? Lots of women darken the brows they already have. I’m starting virtually from scratch. Trying to get my painted brows on evenly is quite a challenge. To make matters worse, I am a Libra whose symbol is the scales – everything needs to be in balance. Invariably one eyebrow is higher, darker, or thicker than the other. In reality, no one has perfectly even eyebrows, and that thought is the one that I keep in the forefront.

All of this reminds me of an old friend who has no natural eyebrows and has painted them on for years. She has a definite idea of how her make-up should look – and she has been wearing the same make-up as long as I have known her, about 25 years. I used to tease her and tell her that she put her make-up on by the numbers – paint by the numbers: medium brown where the 1’s are, turquoise (eye shadow) where the 2’s are and so on. She wore her make-up to bed, and wouldn’t come out of the bathroom in the morning until it was all replaced.

I wonder if there is an eyebrow template that you can place on your forehead and just color in the brow. Do the ladies who do other people’s eyebrows for a living use a template? The brows are always so perfect – so even. Maybe I could invent one!

I never was much into make-up. When I was a teenager, my philosophy, and that of the times was, the least amount of make-up the better. I only wore eyeliner and mascara. As I got older dark circles started to appear, so that meant concealer needed to be added to the area around the eyes. I had pretty heavy eyebrows, and feel like I’ve been plucking my whole life. And I plucked everyday! Although I don’t miss the plucking, the drawing-in takes a lot of concentration and time. Later on I added foundation to my make-up routine – oh, and blush – yes, that was important. Lipstick only became important in my 30’s.

I used to laugh when I heard or read a comment that you should never go out without your make-up. Saturdays were freedom days. Wake-up, pop the contacts in, tie the hair back, put on the sweats and go to the supermarket first thing. That happened until I ran into one of our board members! I was mortified. From that day forward, I never left the house without my eyeliner and something other than sweats.

Like I said in a previous blog, I do not want to look like a cancer patient. Wigs hide the baldness – which actually doesn’t bother me – it just presents an image to the public. Eyebrows make your face. Give it depth, color, shape even. I feel much better now that I am painting them on – I feel like I look like myself.

Mom got out of the rehab facility today. She should be fine. Jean’s good friend, Teresa, is coming in on Friday from the Canary Islands and Friday is Thierry’s birthday – we are celebrating with friends. Treatment went well today. My friend Ann paid me a visit at the infusion center today.  It was good to see her and it really helped the time go by. All-in-all, it was a very good day.

Friday, December 11, 2009

Money, Money

Before I was diagnosed, I used to check out the retirement calculators on various websites to determine how long my money would last. I was very concerned when they kept coming up with the age of 83. The tanking of the stock market didn’t help things. After I received my news about my cancer, I started trying to determine how to distribute my money.


Now I am in a kind of limbo, and feel like I’ve been spending a lot of money on all sorts of stuff: clothes, pocketbooks (costing way more than I would normally spend), trips, dining out. There is a part of me that says, might as well enjoy it, and if this is what makes you happy, then just do it! Like I said before, I am not one to try sky-diving, but spending comes very easily for me.

Each time I had a major crisis in my life, it seems I comforted myself by making a major, if not somewhat frivolous, purchase. When Doug passed I bought a fur jacket and a rather expensive print at a fundraising auction. I justified the purchases by saying the proceeds were going to charity. I don’t regret the jacket, and the print I can visit in Lauren’s house. When I was diagnosed in 2004, I bought a gold necklace – which I bought during a great sale at Wanamaker’s department store when it was closing, and a flat screen TV. Later I went and had necklaces made for me and Lauren at a custom jeweler in Philadelphia. But then I wanted Lauren to have something special for her 30th birthday. These expenses were all out of the realm of what I would spend on anything outside something we needed for the house. This is the extent of my “good” jewelry collection. I don’t have diamonds – at least not any you can see from a distance.

You see, I was the Queen of Thrift. Growing up, we were provided with all the basics. If I wanted anything cool I would have to buy it myself. So, I’ve been working since I was about 12 – not counting my stint as a bicycling produce purveyor. I started babysitting around the neighborhood, and started my waitressing career at 13. I lived on my own from the time I was 18, holding 3 jobs at the same time in order to pay the bills. It seems all my life I’ve kind of scrimped to be able to buy things, for the house or myself. I learned to shop sales and find bargains, but still managed to get in debt. (Now you know why poor Lauren suffered!)

When I started making good money, we were able to fix up our house, and I always had nice clothes, not designer clothes, still shopped sales, but always looked together - in a suburban way. Now I work a lot less, but still like to have nice clothes, city clothes. (What’s the difference in city and suburban dress – not sure – maybe just hipper?)

With this last diagnosis, my first thoughts were about cleaning out my closets, and the thought of buying anything new didn’t enter my mind. After the first couple of months, those thoughts changed, and I started to think about my out-of-date and a little shabby wardrobe, and started buying. I also decided I didn’t want to look like a cancer patient. Things have calmed a bit, but still I find myself thinking about the next purchase.

In all reality, I seem to wear the same things all the time. A lot of today’s styles I don’t particularly like, and they are so trendy they won’t be popular very long. The mature side of me says: Time to be more selective; buy better and less. The kid that was always denied still feels the need for more. Now there’s that little voice in the way back saying you won’t live long enough to spend it – why not just go shopping! I trust that all of these conflicting opinions will work their way out and settle on a reasonable compromise.

The week is ending on a good note. After feeling lousy all week, I’ve finally been able to leave the house and visit my mom who is still in rehab. She is doing much better and is scheduled to come home in a week. The sun is shining, the air is crisp and cold, and it was a very good day.

Thursday, December 3, 2009

Presence or Presents

“Presence or Presents” reads the headline that caught my attention in the local section of our daily newspaper the other day. I anxiously read it thinking this would be a Christmas article that might reflect my views on holiday spending and gift giving, but instead it talked about a group that promoted attending church on Black Friday. A noble idea, but not what I had in mind.

A later conversation with my daughter, who wanted to know what kind of a budget we had allocated toward her clothing etc. while she was growing up, turned into a discussion about holiday gift spending, which caused me to go on a rampage, which I continue here.

Truth is that we had no budget for Lauren’s clothing, toys, etc., because when Doug and I got married we were pretty broke. He had just filed Chapter 11 bankruptcy (and was determined to pay back all his creditors), and I was about $10k in debt. For the first 5-7 years of our marriage we had NO money. The last thing we wanted to do was running up more credit card debt – which we never did, and to this day, all my bills are paid in full by the due date. Those years were not easy and we often fought over money, but we managed, saved, paid our house off before Lauren went to college and we were able to pay most of her tuition without getting loans (she paid the rest).

Yes, Lauren was clothed and there were presents under the tree, but we did not go overboard. Clothing was bought on sale or at discount stores and she did not get everything she wanted. Poor kid had no TV or phone in her bedroom until she was in her late teens. Same thing with stereos, Walkman (remember those), etc. She didn’t get a car until her senior year and even then it was a very old used Volkswagen with over 125k miles – and a manual transmission! She worked through high school as well as college, and paid (or helped pay) for those expensive, trendy items that kids need to have to be cool, etc.

I realize this philosophy sounds incredibly old fashioned, but the truth is, I believe, Lauren really appreciated what she had (and has). Today, parents fall all over themselves making sure their kids have all the latest (iPhones, iTouch, iPods, game gadgets, flat screen TVs, Wii’s). When I say kids, I am talking about children up to 15 years of age. Oh, of course, they have all the trendiest clothes from boutique stores. There is no question that these children have absolutely no appreciation for these “things”, as they are expected and are considered life-style musts that parents feel compelled to buy.

There is nothing more appalling to me than to see parents who can ill afford to spend $500+ each on their kids for Christmas, and are willing to go deeper in debt just because they feel they have to as proof of their love – for the kids – and so their kids will be accepted by their peers.  I wonder if those parents who have the money, and spend thousands on their children at Christmas, even consider that there may be alternatives that would have more of a far-reaching impact on their children’s lives and emotional (if not spiritual) well-being. I wonder if any of these parents sit back on Christmas morning as their children open up package after package, and watch their facial expressions and their attention span with each item once opened, and a few days later as the toys lay scattered and broken all over the house. Especially small children, who themselves are so overwhelmed by the number of items, that they can only focus on one thing at a time – and who soon forget about the majority of their toys within hours.

I am not a religious person. I love Christmas, I love giving and getting gifts, and I love the spirit of the season – giving and rejoicing. My philosophy on gift giving is to give something as a token of appreciation and something that the person would appreciate, use and perhaps remember me by (ego). My family decided they did not want to give gifts a long time ago (which was a hard nut to swallow), so now we throw money in a pot and have a family wine tasting, a great tradition now in its 4th year. Presence: laughing, getting tipsy, and just being together for pure fun.

None of us need anything, so it frees us to concentrate on annual gift giving to non-profit organizations.  Other things we do include picking a needy family and buying gifts for each member, or donating winter jackets for toddlers, putting gift baskets together, and once a bunch of us worked in a soup kitchen (what fun we had). There are so many families that have nothing. Some of them can’t afford clothing, food or medicines. One group we worked with was eating their meals on Frisbees. I am not trying to sound noble; I am just trying to show the dichotomy between families’ needs and wants. Presence: being aware of the needs of others.

Presence: being aware of ourselves and others around us. For those of us with children, by being present, we will be better listeners and more aware of the things that trouble and influence them. We can instill in them a sense of value and moral purpose, and help build their confidence. By being present when we are with our family and friends we will let them know they are important and how much we appreciate having them in our lives (even if it means forgetting about our differences for a while). The smallest change in our attitude may make a significant difference in our relationships. By being in the moment we can live each day to its fullest and hopefully make it a better one – and perhaps most days for you will become a good one, just like today was for me!

Saturday, November 28, 2009

Thanksgiving

We survived another Taraborelli Thanksgiving. It was surprising how calm and organized things were (we must be getting good at this, finally). My sisters had everything set up early, we all had made veggies and desserts a day ahead. Everyone made some contribution.



Jean traditionally buys the turkey and makes the stuffing and gravy (nobody makes gravy like Jean although we are all trying to learn). The turkey weighed in at 24 pounds – its been years since I’ve seen one that big - which could have easily fed 30; we were 19. Lauren and I carve. Dad taught Lauren how to carve sometime ago – she is a real pro. 

Joan made a wonderful Italian wedding soup, her son made green bean casserole. Ann did the potatoes, a mashed white and a sweet potato/apple/chestnut dish which tasted more like a dessert. Theresa made corn bread, Lauren made two ice cream-pumpkin pies and a regular pumpkin pie and helped me make two apple pies. I also cooked up some string beans. Koniko made her delicious cranberry sauce and a chocolate-pecan pie! Mike cooked up some Hope’s peanut butter cookies (yum!).


Dinner was served buffet style. In addition to the large dining table, two tables were set up on the back (enclosed) porch – it looked like a restaurant! But, this worked out extremely well. Traffic flowed and everyone was able to fill their own plates (and glasses) at their own speed.

It has been said that Thanksgiving is hours of preparation and 10 minutes of eating! This is true; however, it does not properly address the “CLEAN UP”. We are fortunate to have Mike (Lauren’s husband) as part of the family. He has no qualms about getting up from the table, dishes in hand, and rinsing, loading the dishwasher and washing the overflow! This year, Lauren helped organize a second shift, pulling in her cousins to help with the chore.


The one shadow on the day was my mother, who really was not feeling well. Earlier in the week she was diagnosed with bronchitis and it seems her antibiotics were not working. My sister called the ambulance on Friday to take her to the hospital where she was admitted for a few days. We trust she will recover fully, and are glad she is now getting proper attention, fluids, antibiotics and treatment to ease her breathing.

For our European friends who read this blog, Thanksgiving in the US is a day to overeat, drink too much, watch the Macy’s Day Parade (there is a parade in Philly too) and American Football on TV! It is also the introduction to what has been dubbed "Black Friday", the day we are all supposed to leave our homes at 3:00 in the morning to go shopping for bargains to give as Christmas presents.


Yes, that last paragraph may make me sound like a bit of a cynic, but that does not prevent me from looking around those crowded rooms and being thankful that I have such a wonderful family, that we have so much to celebrate, and that my parents are still here and involved. It was yet another GREAT day!

Tuesday, November 24, 2009

Reflections

Since it's Thanksgiving week, I guess this is the time to reflect on all that we are grateful for. I think I’ll approach the topic a little differently, and talk about some of the things that made me who I am and that make me feel special.

Although growing up in our household was challenging, causing some of us to go into therapy (yes we all have our neurosis), we have a remarkably close family. We grew up visiting my grandmother every Sunday, and had huge holiday gatherings replete with family tales of life during the depression. My mother taught us how to be independent. She made sure we would be able to take care of ourselves; we all know how to cook, we all keep a clean, fairly tidy house. She also made sure we could support ourselves. When we were kids, we used to sell produce from our garden to the neighbors. We would ride around on our bikes selling tomatoes, peppers and cucumbers. We were able to keep the money, which our parents put away in a bank account for us. We’ve all had good careers (3 of us being entrepreneurs) and major contributors to our households. We are all always there for each other.

I have had several good jobs with bosses that recognized my potential, gave me opportunity to learn and grow, and gave me friendships that will last forever. I count my time as a waitress for LaRosa’s Italian restaurant as one of those good jobs. Edith, the owner, our neighbor growing up, was a friend (and drinking buddy) and someone who listened without being critical, but she would tell you what she thought without mincing words. I worked there during high school, and again after I went out on my own and needed extra money to pay the rent, and then again when I left my first husband. One of the key lessons I learned there was, it doesn’t matter where you get the pasta – it’s only as good as the sauce!

My second real job, at Theodore Presser, the music publisher, introduced me to classical music; Debussy, Ravel, Wernick, Persichetti, and the Philadelphia Orchestra. A whole new world opened up to me. I was given a lot of responsibility in my job, and while there, made friends that I still have today. My job at Philadelphia Re brought me the world of art, philanthropy and travel. We went to galleries (I helped buy art for the office), the Museum, and the Orchestra. We talked about charities and who the company should support, and why. I was able to travel for work, learned about managing the office, property and contracts. The company sent me to Holland and we were able to take the time to explore Germany, Switzerland, Belgium, and France. I learned a bit about negotiating, how to deal with really difficult people and a lot about politics (the business kind).

My job at Philadelphia Re also introduced me to Thierry. A person so special in my life I can’t imagine having lived without him. He is smart, kind, funny, caring, soothing, handsome, has the greatest hands in the world, challenges my thinking (in a good way). He is easy - in that there is no drama – he knows lots about music (and books and boats and other stuff), is concerned about what I think and treats me like I have a brain and my opinion matters. When I fall asleep at night with my head on his shoulder I have a smile on my face, and we start everyday when we’re together the same way, with my head on his shoulder.

My daughter is pure joy mixed with a little angst (I still worry about her – like if I call her 3-4 times when I think she should be available – and she doesn’t answer or call back right away). It is such fun to watch her and Michael (her husband) laugh and joke at the dinner table – the new generation takes over.

It’s been a wonderful week, a wonderful life and a very good day!

Thursday, November 19, 2009

Guilt

Guilt. I have been thinking a lot about this lately. I noticed that I have been thinking about situations that are bringing on ripples of guilt, so I decided to explore the concept a bit.

The Webster definition of guilt:
Pronunciation: \╦łgilt\
Function: noun
Etymology: Middle English, delinquency, guilt, from Old English gylt delinquency
Date: before 12th century
1 : the fact of having committed a breach of conduct especially violating law and involving a penalty; broadly : guilty conduct
2 a : the state of one who has committed an offense especially consciously b : feelings of culpability especially for imagined offenses or from a sense of inadequacy : SELF-REPROACH
3 : a feeling of culpability for offenses
Number 2 a and b applies to my particular brand.

So, what do I feel guilty about? A couple of things that have surfaced include:

  • Not being enough of a sailor to help Thierry take Curlew down to the BVI’s. I only feel a little guilty about this.  Sailing was never even a thought when I was growing up. I do have a sense of adventure and like to travel, but as much as I’ve enjoyed our trips, I can’t see myself on the water for a week or more in a constant state of nausea (it is really a feeling of discomfort that settles in the pit of your stomach). This is how I feel a few days after chemo, and I do not have any interest in re-creating this environment.  Mind you, this is something that is totally in MY head. Thierry has never intimated in the least that this is a dream, want or desire. I just feel badly when he browses the blogs of other sailors making trips like these.
  • The feeling that I rush off of phone calls my friends make to me, especially when that friend lives far away. Mostly this is due to the fact that I am getting ready to go somewhere or I have just gotten back, or something else is going on around me that takes my concentration away. I have no idea if this is in my head or if my friends get the same impression – the fact that Mary always rushes phone calls – but do know that there are ways I can fix this. Minor guilt here.
  • Not calling my aunts enough.
  • Not taking my parents on errands enough.
  • Ending relationships with people I no longer have things in common with, especially those with whom I never really had a close personal relationship – some formed a long time ago – in another life and another social setting. The principal reason I don’t stay in touch is because they are folks or persons who tend to zap your energy and emote a lot of negativity.
This last item does cause me some angst, because the fact is I don’t know how to break the relationship. These people or persons tend to be very needy. My conscience tells me that maintaining contact is an act of kindness, and being a kind person is something I work toward. The other part of my brain says you don’t need to be everyone’s friend – and this makes sense because I don’t feel I devote enough time to my current friends and other old chums that I never see or talk to enough. So, it makes sense to let some people go out of your life.

How do you do this gracefully? The good voice in my head says if you are willing to volunteer and spend time with people in need, taking 10 minutes on the phone with an old acquaintance is a courtesy that can be easily extended. But then they’ll ask about meeting for lunch or stopping for a visit, which leads to excuses and little white lies. Or, I can listen to the bad voice that says, just let it (them) go, ignore the phone calls, etc., and let the relationship die a natural death.

Guilt. I don’t dwell, these little voices just pop up every now and again – but it helps to talk it through and find ways to deal. 

Since I last wrote, friends from Maryland moved into our neighborhood. I met one of our new neighbors down the hall, the first impression was a good one! The weather has been terrific for several days, although poor Thierry had no wind when he took Curlew out earlier in the week. Next week, when we celebrate Thanksgiving with too much food, is also my week off of chemo. Yeah! This has been a very good week!

Friday, November 13, 2009

Too Much Information?

A few days ago I finally sat down and read the written reports summarizing all the scans I had back in July. I had a feeling that there were some things on there that my doctor may have skimmed over; but figured all of the other metastases were superfluous once the liver diagnosis was given. In actuality she told me everything in a very soft way. Reading about it is terribly frightening. I don’t know if it makes it all more real, or because you don’t really understand all of the lingo it seem much more threatening.

I did know that I had a spot on my hip, but I had the wrong hip – it was, after all, the left hip which in fact has been bothering me off and on for a very long time – I’d say at least three or four years. I also knew there was something in the lymph nodes near the breast and that the 4th rib was also involved. It appears there was a very, very small dot on my kidney which I did not know, but they don’t consider that something to worry about (hmph).

We picked up the new reports yesterday after my treatment and read them through. There is a marked improvement in the liver. That came through loud and clear. All other sites appear unchanged. I now have a list of questions that I will email the doctor to get a better understanding of what this all means.

Again, I realize I should breathe a sigh of relief that the drugs are working. It’s just that knowing these other things are hovering – maybe not changing – maybe they won’t ever change, they’ll just be there – makes me very uneasy. I guess this is what they mean by learning to live with cancer. You have to get used to the idea that these nasty little cells live inside you waiting to explode or send tentacles out to other parts of your body.

I have to admit that I have been feeling pretty good through all of this. Notwithstanding some of what I consider to be minor side affects of the chemo, I have been living a pretty normal life with minimal disruption to activities. I haven’t talked about the side affects yet, so I’ll share now. I’ll start from the top and work my way down.

Outside of the obvious – loss of hair – there is occasional nausea, which really has been minor. I have a great drug that cures it, but haven’t had to resort to it very often. For several days after treatment my head aches. My sinuses run constantly and red. Constipation occurs the day of and a few days after treatment. Along with that comes the hemorrhoids – I can now do a Preparation H commercial – it really works! Over the last few weeks the neuropathy has become noticeable in both of my feet, more so on the left. This manifests itself in the form of numbness in the ball of the foot which spreads to the toes. Fortunately, at this time there is no pain and it hasn’t hindered my ability to walk through town. I have started to use shoe inserts and have ordered others that are made for neuromas (a similar foot ailment) which I am hoping will be of even more help. Some days I am more tired than others, and I’ve noticed that it is harder to walk up stairs and hills – I get out of breath very quickly. Today I meet with a trainer at the gym so I can get some pointers about adjusting my workouts to help build my energy and strength.

I have my down days, but they truly are minimal. Many days go by when I don’t even think about the cancer and all associated with it, feeling almost normal. We are trying our best to enjoy those days and still have a long list of things to do waiting for us to make the time and venture out. Each day is a joy, and I look forward to many more good days!

Sunday, November 8, 2009

Fall in the City

It is an absolutely glorious day in Philadelphia. The sun is shining, temperatures are going into the high 60’s, and I don’t have to cook today since we are going to Lauren’s for dinner – things couldn’t be better.

We took our bikes out this morning and rode up to the Schuylkill River, completing the loop around the Art Museum, stopping along the way for breakfast in one of our favorite breakfast spots. I handled the 15 mile ride pretty well, albeit somewhat slow. However, I realized that when you ride slowly, you get to see more of the scenery, and there are plenty of beautiful and interesting things to see both along the river and in the neighborhoods along our route.

Scullers were on the river, families were out riding their bikes, runners and walkers of all shapes and sizes were working up a sweat. There is just enough color left to the few remaining leaves to provide a red-orange fringe along the riverbank and tint the water, and the air was scented with the browned leaves that covered the pathways.

I always loved the smell of fall and of all scents that bring back memories or feelings of nostalgia, nothing affects me as much as the smell of dried leaves. While walking through the city the past few days and on the few occasions we’ve walked through the park or through a pile of leaves, I was reminded of those days when we were kids jumping in leave piles. I actually liked raking leaves, especially on days like today, being out in the fresh air, getting a great workout, and being immersed in the fragrance of fall.

Our old house was on a hill in the woods and we were blanketed each year by yards and yards of leaves. The leaves would reach mid-calve before we even started to rake. Some of the leaves we would just push over the hill in the front of our house. The others we would have to rake onto big blue tarps, and then drag the tarps down the driveway, across the street and into the woods. It was a major project that took several days. Even though I was thoroughly disenchanted by the time we were finished, I never lost the excitement of being out there on the first day.

We don't have a lawn or trees anymore, but the city still provides us with hints of the seasons and lovely parks and scenery to explore and enjoy.

Yes, today is a beautiful day!

Thursday, November 5, 2009

The Results Are In

Today was chemo day and I had an appointment to see my doctor. Things started off well. My nurse took the blood tests quickly once I was brought back to the infusion cube. She began my pre-meds, and as soon as the results came back, she started the treatment. My hemoglobin was 10.9. It seems to hover around 10.8-11.3; lower than the bottom of the normal which is 12, but still good - I think; especially considering that anemia seems to run on my mother's side of the family.

They were expecting over 90 people in the infusion center today - they said it would be a record high. Usually they see numbers in the high 70's, maybe 80; highs are in the 80's. Happily for me the expectation of a busy day meant that they sped things along.

I saw the doctor around 11:00. She literally flew into the room and began her review. Her hours have been cut to two days a week as she recently received a large grant to study triple negative breast tumors. She told me that there are no new metastases. The liver tumors have all reduced in size. The largest of them has reduced by about half. In fact, the tumors (not sure how many there are, but there are a lot) did not show on the PET scan like they had back in July, but did show on the MRI. The tumor in/on my hip is gone; the tumor in the breast lymph area hasn't changed. The cancer markers are down to 28.

I don't know what a lot of this means. I didn't ask. I realize that that was kind of a stupid thing to do, just sit there and not ask. What I want to know is given that there is still tumor/cancer, what does the cancer marker test indicate. I also want to know what it means that there is no change in the breast lymph area. I DO plan to email her with my questions, and I will get the printed version of test results and compare the old and new.

The doctor was quite pleased. I was kind of in a daze. Maybe it was because of the Benadryl shot I had received earlier - which makes me feel like a zombie! I did ask what the treatment plan would be, and she said that I will continue as I have been and have another set of scans in 8-10 weeks. Then we'll see.

I guess I was looking for her to say that it was all gone - or maybe that I would stay on the plan for one or two more cycles, then change. I don't really know, but intellectually I realize I will always have cancer in my liver, and possibly in the breast wall, and that drugs will keep me alive.... for a while.

I really am pleased that the tumors are responding and that this should all help extend my life a bit. And I'll just have to hang in and continue to kill cancer cells three weeks out of the month, and refocus my healing meditation to include the breast (I was way concerned about the liver), and thank god, earth, moon and stars that I am alive another day.... and that every day is a good one because I am alive to live it!

Saturday, October 31, 2009

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

Sunday, October 25, 2009

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.

Thursday, October 22, 2009

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:)

Sunday, October 18, 2009

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.

Thursday, October 15, 2009

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!

Saturday, October 10, 2009

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....

Friday, October 9, 2009

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.

Thursday, October 8, 2009

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....

Monday, October 5, 2009

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.

Thursday, October 1, 2009

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.

Tuesday, September 29, 2009

Close Your Eyes and Stick

Well, I did it! I injected myself today with Neupogen! I received word last week that I was finally approved for self-injection (after the doc's office filed the “right” paperwork and a bunch of phone calls). So, I observed the administration of the last two shots (I never watch when I am being stuck), and with the nurse by my side, I stuck the needle in! Okay, I was sweating a bit and had to take off my jacket. And I felt a little lightheaded – but I didn't pass out!

It wasn't as painful when I did it, I have to say. The medicine burns when it goes in – the needle itself really doesn't hurt. I have been taking the injections in my thighs – plenty of meat there! Perhaps I took a good pinch of flab – or perhaps it was the angle, but it didn't hurt – and that is what I have been dreading! How do you resist the impulse to pull out the needle when the stuff burns?!

Being able to self-inject gives me so much more freedom. And, it works like clock-work. The pharmacy gets the orders, ships the meds Fed-X, it arrives the next day and goes in the fridge. Next time, they'll give me a call and schedule the 2nd shipment. When I travel, the doctor will give me a note to get on the plane, and the meds will board with me in a little cooler.

The weekend was really good. I guess all the steroids I received on Thursday really helped. My energy has been good and I've had little nausea. We had a great weekend down the shore. Our friend, E.A., let us use her lovely home that overlooks the wetlands in Ocean City. We met up with two other couples and rode bikes into Avalon. It felt good to get some physical exercise, and the weather was perfect for the ride.

We celebrated my dad's 89th birthday and my sister's 60-something on Sunday. Joan made her delicious pork shoulder, au jus, along with haricot verts (almandine) and roasted sweet and white potatoes. The cake was a carrot cake from Whole Foods.

The weather was perfect today, I conquered my fear of shots (well, self-administering), and today was another good day!

Thursday, September 24, 2009

Wild, Wacky Chemo

Today was the third treatment in this chemo cycle. I received the trio; avastin, taxol and carboplatin (carbo). All went along well, and we were actually a little ahead of schedule with an estimated departure time of around 1:30 p.m. (We got there at 8:00).

While I was receiving the carbo, the last chemo drug, my hands felt strange, tingly, not quite itchy. I looked down to find red splotches on my palms, and my fingertips were turning red. There was also a tingly sensation around my mouth. I got the nurse's attention and she came over right away. It appears I developed an allergic reaction to the carbo. The redness traveled to my face around my mouth and nose and my eyes started to swell a bit with the rims turning red, along with the tips of my ears. It was a really interesting look. And I was wearing my silver-fox wig with a white blouse - so the color really popped!

The nurse brought along the CRNP (or nurse practitioner), and they stopped the IV, shot me up with Benadryl, pepcid which acts as an antihistamine, and a steroid. My nurse was very calm and matter-of-fact. I was calm, Thierry was calm and reading his magazine - it was all pretty weird - but after about a half-hour, 45 minutes all the redness was gone. I guess this could have been serious (duh!). They checked all my vitals a couple of times - all was well.

Apparently this is not uncommon, to develop a reaction to carbo after receiving several treatments. The nurse said what usually happens in the future is to try and re-acclimate the body to the drug, starting out the next cycle at a lower dosage, then gradually increasing the amount to the recommended level. I really don't know what they will do if it happens again. The carbo is not typically part of the avastin/taxol treatment plan - although the Dr. at Fox Chase did say it is given if the treatment is not working. My doctor believes it helps in the treatment of Triple Negative cancers.

So, some excitment today - and oddly enough - even though it was long and a bit tiring (we got home at 4:00p.m), it was an ok day.

Putting a Lid on It

I did an awful thing last night, something I have really worked hard at not doing for many years. I talked about someone I really don't like to a “group” of people, violating one of my own rules. And I feel pretty miserable because of it. I actually had an out-of-body experience, listening to myself spewing, all the while thinking, Mary shut your mouth – but it just kept coming.

When my job developed into a “human resource” position that involved dealing with everyone that I worked with, even those I didn't particularly like, I realized that I needed to be very careful about what I said about people – and to whom. It wouldn't be too difficult to find yourself caught up in a major scandal or being placed in a very precarious position by saying the wrong thing about someone at the wrong time. Being in Human Resources required the ability to listen objectively to everyone and often mediating between opposing parties – taking no sides.

In business, learning how to play at politics, was a very important and necessary lesson, as today's foe becomes tomorrow's friend – or vice versa. So better not bad-mouth someone, even one on the outs, because in a year they could be in a position of power.

Another reason for not talking about people to others is that the listener to your opinion may start to wonder what you are saying about “them” when they are not around. I'll always remember the night I went out to dinner with two lady friends. The two friends were closer to each other than I to either of them. We saw each other at parties, special times of the year, occasional dinners, etc. The evening began on a great note, everyone catching up on recent events. One of the ladies (we'll call her friend #1) left the table for the ladies room. As soon as she was out of earshot, the other (#2) started in: “do you believe so/so; did you hear what she said.... what do you think of her hair....” all in a hurried, hush/hush voice! I just muttered, being a bit taken aback by the barrage of questions. Well, it didn't take long for lady friend #2 to have to make her trip to the ladies room. Just as before, “friend” #1 started in on #2: “do you believe #2, look at her weight, what about her hair....” At that point I was wondering if I should go to the ladies room or stay glued to my seat.

Okay, I am not an angel. Yes, there are times when I will chime in (even go on a tirade), comment on a friend's behavior, especially if it was bad, and I am "sharing" with a close friend – or with my sisters – boy can we do a number! But I think I try not to be cruel, and try to take the stance that people are who they are, take them or leave them. Often, they are left – as I don't believe in keeping negative influences in my life.

Last night I couldn't stop my mouth from running away with me. I have no idea what I was trying to prove. I think all along I had been looking for an opening and just took it. Trying to vindicate myself for decisions I made because of the bad behavior of another – and instead of feeling vindicated, I feel like a very bad, insecure person. It proved nothing except that I haven't learned to forgive – and I haven't learned how to move on. My ego still gets in the way (as my friend EA would say).

I don't know what is going to get me over that hump. If I went to church, they would probably say – forgive the person and then forget about it. If I followed Landmark Education they would suggest I call the person and straighten it out – which probably isn't a bad idea. Perhaps one day I will have that opportunity and I will try not to blow it by being mean. As they teach you in employee performance management – focus on the behaviors/issues/actions – not on the person (personal traits). And in marriage counseling – it's focus on how “it” made you feel, and not on “them.” In the meantime, I will work on keeping my mouth shut when someone's name comes up in conversation... and deal with “the person” face to face at the first opportunity.

It's been another beautiful day, and yet another lesson to master.

Sunday, September 20, 2009

Moving On

Today our neighbors confirmed that they have sold their condo and in a few months will move several blocks away. When I originally heard they were thinking of selling, I felt a tightness in my chest which I have come to recognize as a “sense of loss.”

The first time I remember feeling this way was when my childhood friend moved to Texas. She was the first person of any significance to move “out” of my life. “Out” being physical space in this case, as we still maintain pretty close contact. Even though our lives had taken many turns; she being a year older than I graduated school ahead of me, had a job before me, we both married and divorced (never at the same time); when she told me she was moving I was devastated.

The next great feeling of loss that I had was when my boss left the States to return to Holland. Work was the one area of my life where I felt like I succeeded. I grew a lot at my job; received my degree while working, got a greater exposure to the arts, and had an opportunity to grow professionally – all of which greatly built my sense of self. This I owed to my boss. I realize that my grief over his leaving also encompassed the end of an era as our company was working its way out of business. We had a great working environment, but it was my boss who treated me with respect and appreciated my opinion and judgment that really made this a formative period in my life.

Regularly, friends sort of fade out of the picture, so the loss of the relationship is less apparent. People move out of the area, change jobs, get married, have babies and form new circles of relationships that require time and attention.

Although I know our neighbors aren't moving far, I had found comfort in knowing there was someone down the hall that we really like and can depend upon to hold our key and keep an eye on things when we're not around. While we won't have the peace of mind of having good people/friends down the hall, we can do our best to maintain our friendship from a few blocks away.

The weekend is just about over – and it was a beautiful one!

Friday, September 18, 2009

Some Good News??

I received what I consider disturbing news last week.

There is a test, CA 27-29, that is used to screen cancer levels. This test is generally used as a marker for breast cancer cells. Its effectiveness in diagnosing breast cancer is highly questioned, however, it is used frequently for patients undergoing treatment to see how they are responding to that treatment.

My oncologist told me that my markers went from around 400 in June (or thereabouts) to in the 90's. I sat on this information for a week, sharing it with only a few folks because I really don't know what to make of it. I asked my nurse yesterday to review the screens that I have received since coming to the center. She graphed the results for me, and you do see an amazing downward trend.

I realize this is probably good news – It means I am responding to treatment; however, I also still feel this discomfort in my side, which really doesn't seem to lessen. Also, I know in another three weeks or so I will have to have a series of MRIs and CT scans to get a better look at what's really going on. Although I don't dwell on it, I am afraid of these tests – not just because they have to stick me, but because of the results.

I really can't explain my apprehension. I am hopeful, but afraid of hearing bad news. Perhaps its a lack of understanding about how the test results relate to remission, if they do at all. This all hasn't dampened my spirit – it just brings my fear a little closer to the surface.

Thanks for listening.

The sun finally showed itself today – and it was a pretty good day!

Thursday, September 17, 2009

A Mixed Bag

Unbeknownst to me, Thierry took this great shot. I had to laugh when I saw it and thought why not share this. I guess one of the best forms of humor is to be able to laugh at yourself, and I love sharing a good joke!

In my search to find humor, I managed to subscribe to the joke of the day which hooks you into Comedy Central. I've yet to get a really funny joke. Maybe the humor is directed to a different age group? Oh, I hate to think that when you mature you naturally lose your sense of humor? But then I always had a different sense of humor - never did like slapstick (like the 3 Stooges or Laurel and Hardy). I hate dumb humor and bathroom humor (like Dumb and Dumber and farting).

Maybe it's not age, it's the people delivering it (the joke)? I caught Jay Leno's show the first night it was on and thought it was awful. I did miss the music awards but had heard something about Kanye somewhere, but totally did not know what Jay was talking about when he interviewed him and had to call Lauren to find out what exactly had happened. And I found little to laugh at during the painful 60 minutes. Point being, that he is more my generation – altho he is making a failed attempt at attracting younger viewers – and I didn't think he was very funny. So, I guess as many readers offered, humor is all around us – you just change the way you look at things.

Today I am receiving my 2nd dose of chemo of my 2nd 3-day cycle (is that confusing or what!). I am not sure how to count the first mega-treatment – maybe that was my 1st cycle – and actually I am on my 3rd cycle. Thing is, they can't even keep it straight here at the hospital! That is really scary. I am going to have to make sure I write each treatment down so I know what is going on.

I did get a bit of good news. I called Blue Cross and was told I can get the Neupogen, and have it delivered to our home. All I need to do is get a form filled out and fax it with with a script. In speaking to the nurse here at the hospital today, she said that the folks here should have worked all that out and should have completed the form and sent it in. I spoke to the responsible person on Monday, and she sounded like she new nothing about it. They also said they would follow up – but did not as of yet. You've got to be your own advocate!

The Neupogen must be working, my energy levels are good; some minor nausea – nothing requiring any drugs to function. Attended a lovely wedding party on Sunday at a beautiful location; celebrated Mom's 89th birthday with all the family; had dinner with my sisters; received homemade muffins and applesauce from my dear neighbors; went to a Phillies game with Lauren and Mike and saw them (the Phillies) make a grand slam, and had my dear husband by my side to share it all with! It doesn't get any better than this!

Monday, September 14, 2009

Cell Phone Etiquette

Well, I finally did it! I told someone today to take their cell phone conversation elsewhere.

I was getting my vitamin C infusion today - which now takes 3 hours because I am getting a bigger dose. Anyway, I was there about an hour when another woman and her daughter (Melissa) came in. Melissa promptly began working on her laptop and texting. I started to get drowsy so I pulled out the iPod and put on my relaxation exercise.

The infusion space is pretty wide open. Chairs are in groupings of two separated by a little table; hence there is very little privacy. Melissa and her mother were sitting across from me. Just as I was going into lala land, Melissa got on the phone. Like most people talking on their cell phone, she was talking rather loudly. Okay, I thought, this won't take long... until her phone rang and she proceeded to chat some more. At that point, I turned off the iPod and just kind of stared at her.

After a few minutes I thought I'd try meditating again and put the headphones back in. The iPod would not work!!! Now I am a bit ticked. But, I decided to get myself to relax and try meditating without the help of the iPod. Then Melissa decided to call back the first caller and discuss the quote he was asking for and to schedule an appointment for tomorrow. That was it; I asked her if she would mind making her business calls in another room. She said, oh, of course, and apologized - then muttered something about me listening to my iPod (don't know what that had to do with it?). I later mentioned to the nurse what I had done - she was sympathetic and said she had been trying to come up with a sign that would "work" with the decor of their brand new facilities.

I've heard many arguments that people like me are dinosaurs and that this is what people do today, get used to it. I don't text or read emails while I drive. I "generally" don't answer my phone when I am in a restaurant or visiting with people. I would never take a call when I am in a meeting. I am sure Thierry would say I am more cell-phone obsessed than he, and probably I talk on the phone too much. But I still believe in things such as etiquette and good manners. I also believe in privacy. I've heard lawyers discuss cases on their cell phones - and I really don't want to hear about someones social life in the elevator.

Now that I am emboldened, look out! I may be a dinosaur, but I don't have to be brought into someone else's drama - especially when dealing with my own.

Today was a beautiful day - I hope everyone on the east coast took the time to enjoy it!

Sunday, September 13, 2009

A Little Dose Will Do Ya

Thursday past was the beginning of my 2nd cycle of chemotherapy. My blood counts were up (although still lower than the normal low), but they were able to give me the full treatment. It seems as tho I will have to receive the Neupogen shots after each chemo treatment. As I may have mentioned before, these are given over three days and must be administered at least 48 hours before the next chemo treatment.

When I was visiting with the doctor, she suggested that I self-administer the shots... I immediately pointed to Thierry and said “he'll do it!” The advantage to self-administering the drug is that I won't have to go back to the oncologist office for three days following my treatment. Also, I could get the shots over the weekend, which may help my energy level. As it goes, I don't have prescription coverage which may impact my ability to obtain the drug.

The fact that I don't have prescription coverage may shock some of you, but you have to take whatever benefits you can get – especially when you have had a serious illness such as mine. Since I am able to get my benefits through a group plan (I would never be able to get coverage – or afford it - otherwise), I am only offered what they offer – which does not include prescription. If the entire group doesn't take prescription benefits, no individual can purchase their own through that provider.

The drug is covered by my health plan when I receive it in the oncologist officer. Currently, it appears the insurer will allow me to self-administer the shots – although we are waiting for confirmation about this, but this may only be allowed until January of 2010. At that time, they may no longer allow self-administration of certain drugs – Neupogen included. Mind you, they will pay for it if I go to the oncologist office, taking a scheduler's time to schedule the appointment, the hospital pharmacist's time to deliver the drug, the nurse's time to administer it and space needed for infusions and other medical necessities, but they won't allow me to buy it at an affordable cost and do this at home. By the way, the cost of one Neupogen dose (if I buy it) is a “mere” $585.00.

If anyone thinks our healthcare system is not broken, they live in a dream world. I have been trying not to talk about healthcare, given all the nonsense that is going on right now in this country. But when I see the 10,000 protesters in Washington, I can't help but see a bunch of government employees (covered by a government-run health plan), retirees (covered under medicare – a government-run health plan), union workers (covered under a quasi-government-run health plan), and corporate people who are covered by their employers; all of whom pay little or nothing for their benefits – AND get to retire with medical benefits.

Again, I hate to grandstand, but if I lose my benefits, there will be no recourse for me. As it is, I have to worry about what medicines I will need that I may not be able to afford. I am sure there may be those who will shrug and say, oh well, that's the way the cards are dealt – I guess they are the people who have never had a close family member who has had it happen to them.

The sun is shining, finally – I've been feeling pretty good this go-round – and today is a very good day.

Wednesday, September 9, 2009

Something to Laugh About

It's amazing how quickly one's mood can go from happy and lighthearted to grumpy and agitated. I woke this morning feeling down and trapped. I assume it is the thought of 3 hours of Vitamin C this morning and 8 hours tomorrow at the oncologist that has something to do with it. However, I also noticed that I feel somewhat stuck. It's hard to make plans to go anywhere, and I find it depressing just staying in the condo. As much as I love it, the walls are beginning to close in.

Lauren and I did make plans to go away Columbus weekend. We're going to Denver with my friend Barbara from SF and Ann from PA. Thierry and I will most certainly take Curlew out again, and at some point, will get up to NYC. Its just that in the back of my mind is always a question of how I'll be feeling. I guess this is what you have to learn to live with when you depend on chemo for your survival.

I was flipping through a book that a friend gave me by Robert Schimmel, a story of how humor got him through his non-hodgkins lymphoma treatments. I generally avoid books about cancer and cancer survivors – they tend to depress me. I did read Lance Armstrong's book, “It's not about the Bike”, which I did enjoy, but for the most part, I really don't want to know what others have gone through, who lived and who didn't, etc. I felt very bad and unappreciative when my friend gave me a book of stories by various cancer sufferers/survivors. Intuitively she asked me if it would be something I would enjoy. Since she asked I was able to express my feelings to her.

At any rate, I read his list of lessons learned. One of the items on his list was to have a sense of humor, no matter what. I think about this often, especially when I am curled up on the sofa with my face smushed in the pillow feeling like a zombie. My sister told me that when she was going through her treatments years ago, she tried to maintain a sense of humor and looked up the joke of the day – I think on the Internet.

I used to think I had a sense of humor – but somewhere along the way lost it? Maybe I just imagined I had one, because I remember a dream from years ago – during a stressful time, when my neighbor/friend/former boss Edith LaRosa, long ago deceased, talked to me in a dream. I remember the dream vividly and won't go into the details, but she told me to stop taking everything so seriously. She said I was always too serious. I was one of those people who thought about everything to the point of overkill, often taking people's remarks personally. During my working days I would dwell on my mistakes and spend countless hours rehashing conversations and wondering if I said the right thing.

My gmail address is iwanaberma, for Erma Bombeck. Remember her? She used to write a column in the Philadelphia Inquirer (possibly nationally published). She passed away many years ago. I always wanted to be able to look at life as she did, noticing the ironies in things people said, in words, in everyday life, and writing about them in a way that always brought a smile or a chuckle.

So, how does one go about acquiring a sense of humor? Do you subscribe to joke of the day? Watch the Comedy Channel? Does it require that you listen more, question more, observe more – and think a lot less? How do you (my reader) maintain a sense of humor?

Today I will try to find things to laugh about – and turn this day into a good one.