Friday, May 28, 2010

The Results Are In

I am writing this week’s blog spread out on the settee on Curlew, a spot I haven’t held in some 8 months. I’ve missed this; the boat, the water, Baltimore. As soon as I spend a few minutes on the water I feel calmer, more relaxed. Tomorrow we hope to head out - to where, we’re not sure. We’ll figure that out once we see what direction the wind is blowing (if it is blowing…), and go from there.

Okay, so the big news. I saw my doctor on Thursday. Mind you, I haven’t seen the reports myself, hence, I don’t have all the details. She told me that according to the report, all tumors are gone except one. The tumor in the lymph node is not there, nor is the one in the fourth rib. One of the tests had shown a spot on the lung, which they did not think was cancerous – this is gone. The tumor on the hip is gone, but that did not show on the last test either. There also was a spot on the femur – which they did not officially declare a tumor – that also has disappeared and again, this was not on the last set of scans. The July 2009 report stated that there were innumerable tumors in the liver. This report indicates there is one tumor that is about 2.4 centimeters. This tumor had been originally 6.7 centimeters.

A marvelous report! Everyone is really excited for me and yes, I am very happy about the news. I didn’t realize how nervous I was about all this until I was sitting in the exam room and I started to shake. After I heard the news, I immediately became stoic. You see, we still have a way to go and this cancer is so unpredictable and aggressive, that I have to remember that things can change in a second. This is when I have to remind myself to live in the moment, one day, one hour, one minute at a time, otherwise if the news comes back not so good one day, I may truly crumble. They say that today they don’t talk about curing cancer; it is all about getting it to stop growing. Many women live many years with breast cancer. You just don’t know who are going to be the lucky ones.

What does all of this mean in my treatment? Not much, at least not now. Although the doctor did not allude to a future, she made it clear I have to continue with my current treatment and reminded me of this cancer’s unpredictability. I figure we’ll see what happens with the next set of tests in three months. I can take an occasional break from treatment – but that was not defined either in terms of how often or how many I could skip. I am planning to get a second opinion to determine if I am doing the right things at this stage. I did ask the doctor if they could cut out or nuke the liver tumor.  She thought about it and said it was a possibility, but it would mean stopping the chemo. She doesn't think that is a good idea.

Although the day started out on a fantastic note, things kind of went haywire from there. About six months ago I had a reaction to one of the chemo drugs – the carboplatin. Since that time, I am given an extra shot of Benadryl and another dose of steroids prior to receiving the drug. This time the doctor increased the carboplatin dosage because my weight is up (ugh!) and because my renal function has improved (actually all my organs are functioning normally). I did not want them to do this since I felt I was responding to the current treatment and I am concerned about worsening the neuropathy. Anyway the PA (physician's assistant) came out fighting and stating how it is important to match the drug to the weight, etc. so it reaches its maximum effectiveness, blah, blah, blah, so I said fine!

Well, I don’t know if it was because of the increased dose, but after eight minutes of receiving the infusion (the total time to administer this drug is one hour), I felt my mouth, throat and sinuses begin to tingle. Then I felt my face flush. My sister Ann and her husband Juan were there with me (Juan receiving his infusion that day), and I asked them if my face was red. They looked and said yeah, a little. I called the nurse, by the time she came my face was bright red – my ears were actually scarlet! They immediately stopped the infusion and began a saline drip. After some discussion, they gave me another shot of Benadryl and another dose of steroids. After about 20 minutes things returned to normal. They began to administer the carboplatin again.

Things went along smoothly, for a while. When there was only about an inch remaining in the bag I noticed my legs started to itch, then my arms. I pulled up my shirt and noticed a rash beginning to appear – same on my legs. Before I new it my hands turned deep red. I had already called the nurse and once again, they stopped the treatment and started the saline drip. Soon the little red spots that appeared on my arms started to connect themselves, and I now looked like I was wearing a pair of scarlet elbow-length red gloves.

The PA and pharmacist had a bit of a row over what to give me next. The upshot was another shot of Benadryl. Now I have had 100mg of the stuff… Although I was wide awake, thanks to the 50mg of steroids, I found I had difficulty forming sentences – so when my sister Jean called in the middle of all this she insisted that she come and pick me up to take me home. I finally agreed. Fortunately I had a great nurse that day, Cheryl. She insisted they keep me (after the PA had said to send me home), and got me another bag of saline. The color finally disappeared. All that remains today is a little puffiness in the ankles and fingers. We left the hospital at 5:55 pm; I had arrived there that morning at 7:55.

Lauren had stayed over the night before my treatment so she could go with me to the doctor. We got up early and went to Mrs. Kay’s for breakfast. She got to experience this wonderful eat-at-the counter restaurant, with all the locals who show up there faithfully every morning. She was so thrilled with the doctors report, that as soon as we got back to my throne room she texted all her friends. What a kid!

Jean drove me home and hung out for a while. We had meatloaf and mashed potatoes for dinner that Ann had brought for me earlier that day. I have the most amazing family! It was a great ending to a rather emotional day.

PS: As I told a friend the other day, now is NOT the time to uncross your fingers and toes, nor is it time to stop your prayers! We’ve got another tumor to go, and there are drugs in the pipeline that we got to get to market. They may be my future – as well as the future for many others!

Monday, May 24, 2010

Am I becoming one of those....?

I almost became one of those. Well I kinda am one of those. The folks I may have criticized in a past blog: the ones that are constantly on their cell phones, either chatting or texting.

You see, I had to get a new cell phone after we returned from our trip to Italy. My phone had died over a month before, but Verizon wouldn’t let me get a phone a month early without me giving up a $50.00 cash back gift and charging me $20 or so as a penalty. Thierry met me at the store, and we decided to switch to a family plan and reduce my minutes (which initially made me quite nervous but has proven not to be a problem so far). Given that I had to make a 2-year commitment, I was concerned about buying a phone that didn’t have internet access and would be immediately outdated. This meant I needed a smart phone.

Prior to going to the Verizon store, we researched phones on-line, and checked the user reviews. Blackberries got high marks and I was pretty convinced of the make and style of phone I wanted. Naturally, when I got to the store I chose something different. I did select a Blackberry, but picked out one that has a touch screen and required that I purchase a $29.99 a month plan to access the Internet. This was not a shock as I had already figured that by reducing my minutes, I could add the extra cost without incurring additional expense (well, it is costing $10 more but that didn’t seem onerous). I have unlimited internet and texting ability with this plan.

The phone was remarkably easy to use. I didn’t have to look at the “how to” manual for several days (actually didn’t have the time). My son-in-law (Mike) helped me out with a few features. He has an older version of the same phone. What I wasn’t ready for was how addicting it would become. My email is delivered to my cell phone! OMG! Instant access to email AND web browsing! And, when someone sends me an email with an attachment, I can actually open it and read it!

When I first got the phone, whenever I saw the little light flashing in the corner I had to pick it up and read the emails or texts. Regardless of where I was, I was always looking at my phone; in a restaurant, walking out of the Met, walking down the street, sitting at a table sipping a drink. Worst of all, I found myself looking at it while driving! Yes, just as bad as driving drunk, so I immediately told myself this was not good. Lauren is reading this and she is probably thinking, “yeah mom, after constantly nagging me about looking at my emails and using my phone while driving…..”

I heard something on NPR the other day about teenagers using cell phones and texting while driving. One of the speakers talked about how parent’s behavior influences their children’s behavior and actions, and how parents are just as bad as kids in using cell phones at inappropriate times. I felt like they were talking about me (ha, maybe I learned it from Lauren). Now I deliberately try to leave the phone in my bag, at home when not necessary to carry, or I try very hard to just ignore it. I really am afraid of having an accident because of a cell phone – once I actually swerved while trying to look up a contact. How dumb was that?! Dumb, yes, but it also scared the heck out of me.

I have to admit that I love texting. I find that I really don’t like speaking on the phone for long stretches. A lot of cleaning or computing or reading can be accomplished during time spent on the phone. It also is impolite to not “listen” to the person you are on the phone with. When you are with a person, albeit face-to-face or on the phone, you should be present in the conversation. I tend to get impatient after a while and begin to fiddle about. When you text you say what you need to say in one line and then can sit back and wait for a reply. A lot gets accomplished with few words.

I like my new phone. I feel like I have made it to the next level in technology. Now all I have to do is learn how to control myself and use it smartly.

I am including pictures taken during our recent weekend in New York. We had perfect weather and a great time. We arrived on Friday and rented a rowboat in Central Park, then had drinks at what used to be Tavern on the Green. Thierry really enjoyed the opera on Saturday, I really loved the Met. My friend Ann joined us Saturday evening, we had a good dinner and on Sunday we all went to the Whitney Museum. I am ready to go back.

I got through the dreaded scans okay, but my vein hurt until yesterday (from Tuesday). They have to inject a substance which provides a contrast between images while I am being scanned.  I’ll find out the results on Thursday – yes I am nervous as hell! Keep your fingers crossed!

It has been another busy and wonderful week.

PS:  The pictures were taken with my new cell phone!

Friday, May 14, 2010

Wrapping Up

I realized I left a few items open regarding our Italy trip so I thought I would dedicate this blog to wrapping up a few odds and ends. Also we are on our way to NYC and I am NOT bringing my netbook and don’t want to post too late in the week.

Thierry’s suitcase did arrive intact from Italy. It appeared that the case had been searched; however, all bottles arrived safely – we were most concerned about the Jenever (Dutch Gin), which has since been refrigerated and sipped!

We learned on the last day of our trip why the bread in Tuscany is rather tasteless. During the 1500’s Tuscany was under Papal rule. One of the popes decided to raise taxes (probably to build a cathedral as a monument to his reign), and taxed salt. The residents protested by omitting salt from the bread – this was supposedly one of the first major protests of its type. To this day, they make bread without salt. The trick to eating the bread is to first salt the bread, then coat it with olive oil.

We had a wonderful Mother’s Day. My sister and Lauren took charge of the festivities. Jean cooked chicken cutlets, which were wonderful; mushrooms in oil, garlic and hot peppers, which are to die for and must be eaten with good crusty bread, and asparagus. Lauren brought these outrageous pastries from a French bakery, each one better than the next. We ended up with 18 people, some of us eating in the living room. Things went very smoothly and appeared very organized. For some reason (here is my control freak coming out), I was nervous in the days leading up to the day as all I could think about was where everyone was going to sit. Normally we would use the back porch, but we had put the screens in and the weather had turned cold and rainy.

While writing my last blog about Mother’s Day, I felt something was lacking and it has weighed on my mind ever since. And that is this. There is a lot of angst that goes with motherhood. Since we begin the journey with no experience, it is all trial and error. Along the way, we constantly question our decisions and judgment. Hopefully we realize we are helping to form these creatures into human beings; a task in itself which can be daunting and can’t be taken lightly.

Mother’s are usually the ones that get the phone calls from school, learn about the accidents, and take the brunt of the child’s reactions to authority. Mothers are the ones who arrange the schedules, worry about doctor appointments and entertaining the kids. We plan the parties, the meals and at the same time, try to coordinate with our spouses (or figure out how to do all this on our own), and remember that we have parents and extended family that need attention. Oh, and then there is maintaining the house, grocery shopping, etc.

I do not mean to infer that fathers don’t have a role; however, these tasks generally fall to the mother – even when she is a working mother. So, if I didn’t properly recognize all that they do, mothers should be recognized for their efforts, and not just one day a year.

I was reminded of a comment that a person made about people having children – that having children was a selfish act. Some people may decide to have children in order to continue the family line; perhaps to have someone who takes care of them in their old age; or out of loneliness. This is not to say that there aren’t bad mother’s out there – unfortunately there are many and this blog will not address them. Raising children requires one to be selfless. It is a tremendous responsibility that should not be taken lightly. I give kudos to those that have decided not to have children for whatever reason. It is better to not give birth than to have a child that is not really wanted.

I just wrapped up another series of chemo treatments. I go Tuesday the 18th for another set of scans. Pump up the prayers and keep your fingers crossed. I’m learning about new supplements that are supposed to help neuropathy – I am leaving no stone unturned. I even started to ice my feet during chemo – the nurses are all very curious to see if this works. Oddly enough, I found that after icing, my feet feel a lot better for several hours. I did this last night and noticed a marked improvement in movement.

As I mentioned, we are leaving for New York. Tomorrow we are going to the Metropolitan Opera to see a performance of Lulu. I understand this opera is pretty intense, but I have never been to the Met and am very excited! The weather is supposed to be warm and sunny, so we should have a great weekend….. just like the week before!

Sunday, May 9, 2010

Mother's Day

I am sure many of us are spending at least a few minutes reflecting on our memories of our mothers and/or our experiences with our children as they were growing up. Hopefully most of those memories are good ones and bring smiles to our faces.

Parenting is difficult. Motherhood does not come naturally although I think most people believe it should. Most often, all we have to draw on once we have a child are our own experiences of growing up and being “mothered”. I grew up in a rather chaotic household, youngest of four. My widowed grandfather lived with us and needed much care. My mother worked full time when I entered elementary school, my father had his own business, my mother was probably going through menopause during my early teen years – there was much screaming and yelling. I can only imagine the difficulties and rough periods my parents had to overcome during this time. There was not a lot of nurturing, vacations or ball throwing in the backyard.

My parents were raised to never question an adult’s decision and never to ask why. Women didn’t talk about menopause, and my parents would never share their concerns with us or talk about how they were feeling. It was “do as you are told or else…”

My philosophy on parenting was to treat your child like you would have liked to be treated. I tried to create an environment where Lauren could grow confidently; knowing she was loved, that she was beautiful and that she could do anything she put her heart and mind to. I spoke to her in a way to enable some understanding of what was going on around her, not treating her as a child, but not as an adult – as a person. She was also taught how to be responsible for herself by being independent. This last trait was something my mother instilled in me.  I always loved being a mother. It was never a chore.

Today I am also thinking of my surrogate mother, Louise, the mother of my oldest and dearest friend, who I called "mom". On Sunday mornings I would go to her house (skipping church), and she would prepare breakfast for the family. In an electric frying pan she would cook a load of bacon and then fry eggs – over – in the bacon grease. She taught me to eat a fried egg on top of a piece of toast, which to this day is the only way I will eat an egg. I lost my taste for eggs when my mother forced me to eat a scrambled egg until I threw up. Louise was always there to commiserate with when I would have screaming battles with my parents.

So how do we celebrate mothers? Many feel that Mother’s Day is a Hallmark celebration; I tend to agree with this. Yet again, things get blown out of proportion. Instead of true appreciation for what it takes to maintain a household, especially today, and raise a healthy family, the day becomes an obligation to buy gifts, go out for a pre-fixed menu dinner and compare notes with your friends about what you got. And, why should appreciation be limited to one day?

A group of us discussed this at lunch yesterday, and the consensus was that at least naming a day for mothers serves as a reminder that we are here, for better or worse because of those who raised us; of our obligation to our own children; and to those who for many reasons leave the bulk of parenting responsibilities to one person in the household (be it mother or father), that they should be thanked and celebrated.

So to all of you who are responsible for caring for a child, Happy Mother’s Day!

It has been a very busy week, so my blog is very late. Thierry is on Curlew getting her ready for the sailing season. I am not really sure what I have been doing, but haven’t been home much. I began a volunteer project this week which will continue for a few months – working with a non-profit dance group on board development. I spent a night at L&M’s which was like a mini-vacation. We pampered ourselves with massages yesterday, and today my sister Jean and Lauren are preparing dinner for 18-20 – final tally not in. It has been another wonderful week.