Sunday, January 23, 2011

Another Day, Another Treatment Plan

Today is Sunday, sunny but very cold; temperatures going down to the single digits tonight.  This morning Thierry said he was sick of winter.  I reminded him that it is one-third over.  So for those of you who are suffering the winter blahs, keep that thought in mind.

I received a call on Friday that my new treatment has been approved by the health insurance provider.  I will be getting a brand new, just on the market a few months, drug called Halaven.  It is so new that none of the nurses I have spoken with at the infusion center have administered it, and they don’t have a supply at the hospital pharmacy.  They do expect to have it by Thursday so I can begin treatment.  Also because of its newness, no one knows what the side effects really are.  In looking on line, it appears they fall in line with the rest; hair loss, fatigue, nausea.

The treatments will be administered two weeks on, two week off.  Apparently it is an injection given intravenously (as opposed to a slow drip).  This is a good thing as it means my time at the infusion center will be greatly reduced.  Then it will be about settling in to the new normal.

I have to say the response from my new doctor has been terrific.  She did explore trials to see if I could get into a Parp study.  Unfortunately, the only study combines a Parp with carboplatin – which I developed an allergy to.  Although they say some people can be desensitized to the drug, they refused to include me in the study.  I have decided it is time to get a second opinion, and have selected a doctor at Penn to contact.  We’ll see where it goes.

This is the first time I have not read my test results.  I really don’t want to know what they say.  I remember when Mike’s mother was going through treatment for lung cancer.  There were a lot of questions I don’t think she asked.  I thought then that I would want to know everything.  And, up until know, I stayed on top of everything.  I am not exactly sure what changed.  I guess it’s about knowing what the outcomes ultimately are, and trying to maintain hope that we will beat the odds. I can’t focus on living, if I am focused on dying. 

So, I’ll focus on exploring options for living – and trying to live each day the best that I can. 

Monday, January 17, 2011

The New Normal

Sounds like a subject philosophers could debate for a long time. What is normal?

When we were in New York recently my son-in-law asked me how I felt. I said fine, I guess; but what I really want to feel is normal again. By that I meant how I used to feel before chemo.

Before chemo I could wake up in the morning and jump out of bed, get my shower, start breakfast, make the bed and begin my day without hesitation or pause. I could eat whatever I wanted without a care (other than worrying about fat content or calories or sugar). I could get up early and go to a meeting, walk to and from appointments and shopping trips, pick up last minute and go do whatever – dinner, movie, a concert, even stay up until midnight, one o’clock. Doing all this and feeling - well, good. We didn’t hesitate to plan trips and go when we got the urge.

During my first course of treatment, I had to be at the infusion center every week for three weeks, then had one week off, so things had to be planned around this – very doable. Other than one day of minor nausea and tiredness, the chemo didn’t debilitate me that much. I could even walk to and from the infusion center in all weather. We did take a trip or two when I could arrange it around a break in treatment – and twice actually took a week off of treatment. There was some neuropathy which was not debilitating, and for the most part, things hummed along.

Then I started the new chemo regiment which meant going to the infusion center once every three week, but taking chemo pills for 14 days, leaving one week to “recover” before the next trouncing. This chemo inhibited my ability to walk as much as I used to including using the treadmill at the gym. I was constantly tired, so tired that just the thought of going to the gym seemed like a major hurdle. It takes me many minutes to actually get out of bed and over an hour to get dressed. I rarely utter a word to Thierry for the first hour or so after I get up. Often I have to sit to deal with the regular morning headaches that sear through the right side of my head and neck.

My diet changed dramatically because my mouth became so sensitive, including the onset of mouth sores which I never had to deal with before. I am usually in bed by 10:00 and rarely get up before 7:30. I don’t like to make plans in advance anymore because I am not sure how I will feel – although we do have reservations for a stay in upstate NY in February (I am so determined to go). I still managed to work but timed meetings carefully to ensure I’d be physically able to make the meeting.

So as I began to accept this new normal and adapt, I learned last week that the chemo is not working. My substitute oncologist (who I like) is looking for an alternative chemo to start either this week or next.

I guess what I am learning from all of this is that feeling normal is relative… It’s just how you adapt to how you feel and decide that you can still live and enjoy life, within its limitations. But I still miss those nights of drinking and laughing until 1:00 in the morning!

Sunday, January 9, 2011

Somtimes a Simple Thank You is all it Takes!

Since it is the new year, I thought I’d write about something that everyone could add to their resolution list. That is, to say Thank You.
Something so simple, yet it seems that today certain courtesies are expected and don’t warrant acknowledgment. Or perhaps people are so preoccupied with getting somewhere or acting busy, that saying thank you is the last thing that comes to mind.

Times when people fail to say thank you include:
  • when you hold a door for another person – although there are many people who are oblivious that there is someone behind them and they let the door slam on you, or again are in such a rush that they just let the door fly wide. 
  • when you step out of the way – or make way – for a person to get through a small area; particularly for a person pushing a stroller or for a person in one of those automatic wheel chairs. Seems that both of these groups believe it is their right to make headway since they are in some way attached to a wheelie thing.
  • when a waiter brings you something you asked for – or not. Seems many people feel that it is a server’s responsibility to take care of them while drinking or dining out and that the tip is thanks enough. I find if you recognize their routine efforts, waiters tend to be much more attentive and pleasant. 
  • when you ask someone to bring you something – like your husband, daughter, sister, etc. Maybe being close to a person causes us to feel the thank you is assumed. It seems that older people especially feel it is their right to ask others to get them things and the thank you isn’t really considered. 
  • when someone stops to let you pull out into traffic from say a garage or parking space, or lets you merge into traffic. I remember when I was little I wanted to be the one to wave and thank the other driver. Where did that go? It is even rare these days that people are so willing to let you in, even in a tight merging situation that often you don’t get the opportunity to say thank you. I like to do the wave – probably because I truly am appreciative when someone lets me in because it is so rare.
There are many other incidents and stories I am sure you are thinking of and can share relative to this topic. The last bullet was actually what caused me to write about it. People behind the wheel tend to be very unfriendly, preoccupied – especially when on the phone, and always in a rush. Maybe if we all slow down a bit and be more present, we’ll remember to say Thank You!

But there are times when saying thank you can seem trite; like when someone rubs your feet or leaves little packages of goodies at your door or secretly sends a book to your Kindle. How do you show your appreciation for those who go that extra length to make your life a little better. I’m working on that one.

The tree is down, the weather is cold and more snow is expected during the week. My goal is to get myself out of the house no matter how rotten it is. It’s been a busy but good week.

Monday, January 3, 2011

Bringing in the New Year

Annual Photo
 (All part of the Spain Trip contingent except Mom)
Happy New Year! It is already the 2nd and the year has started off on a good note – I feel good today! Even went to the gym.

I won’t write about making resolutions, I did that last year. The only observation I will make is that over the last two days I have seen in the paper and heard on NPR news people making resolutions for others. Editors and so called experts making resolutions for everyone from Angelina Jolie to Ben Bernanke. WHO CARES!

We have had a wonderful holiday. I dreaded the thought of getting chemo on the Thursday before Christmas. I would have asked my doctor if I could skip the treatment, but I didn’t get to see her. She was in a bad car accident and will be out of commission for a good while (dread!). I did manage to get an appointment for this month with a young oncologist I heard speak at one of the conferences I went to and am quite happy about that.

During my treatment we had a few visitors. Lisa R came for a bit, then Lisa M and Barbara H came and we played scrabble and snacked on Barbara’s wonderful cookies. Lisa wanted to give me a foot massage. Reluctantly I agreed. I admit I felt awkward; first in having a friend spend her time pampering me and second, because my feet are so awful from the chemo. What a wonderful treat that was! These visits give Thierry a break and help the eight hour treatment day go by quickly. I left in a great mood which lasted for several days. I was surprised at how good I felt the days following – better than I had after all the three previous treatments.

We celebrated Christmas Eve at home, having a spaghetti and clams dinner with Barbara and Barry. Kirk and Lisa joined us for drinks and Lauren and Mike came over to spend this night. On Christmas Day everyone rallied around and we had a great time and lots of food. I made another venison stew, Ann brought shrimp, Koniko made her incredible sushi, Jean made saut̩ed mushrooms with garlic and hot peppers, Joan brought snacks, Lisa made the salad, Lauren brought the Yule log! Joan also brought a game which kept us entertained for a bit and the conversation flowed. Lauren and Mike stayed over again Christmas night Рanother wonderful treat. Lauren and I fell asleep on the sofa watching the Wizard of Oz. Mike gave Thierry and I our most prized gifts of the season: a radio controlled helicopter for Thierry and a foot massager for me! We have used them every day since.

The first snow of the season fell on Sunday, close to a foot. We got a call that afternoon from Barbara, who suggested we all meet up at a bar for drinks then head to Lisa M’s for dinner. Normally I would have bowed out, but decided I wasn’t going to miss the fun of a first snow again (last year I hunkered down while Thierry went out). I was very glad I did, and managed to last for quite a while – although I was in bed by 10:00.

I had two days of meetings during the week and am thrilled to be working with an old chum that I haven’t seen in a couple of years. The project, if it goes off, should be a fun one, and working with Marian will be a wonderful experience.

We had dinner twice with my sister and her friend Teresa from Spain, who spent several hours over the week working on my feet.

Thursday was the family wine tasting. My brother and his wife came for the first time, which made it even more of a special event. The wines were from different regions in Italy, a sparkling, two whites and three reds. The food gets more creative and plentiful every year. Another great party and everyone seemed to be pretty sober when they left.

Friday morning I had a meltdown. Maybe it was all the activity that occurred during the week; maybe it was too much booze, perhaps the chemo. On top of that it was our second wedding anniversary so the guilt of being short-tempered and cranky only made me teary and more frustrated. Thierry and I went for a walk and picked up a scrumptious pound cake made by a friend of ours. It was good to get out in the fresh air and relatively warm weather. When we got back, I took a long nap. Feeling much better when I got up, we went out to dinner at a local restaurant to celebrate. I slept more when we returned, waking in time to prep a few things for New Year’s Eve. A few friends stopped by to join us in bringing in the New Year and watching the fireworks from our condo.

On New Year’s Day Thierry went to the Mummers parade while I went to join in a farewell lunch for Teresa who was returning that day to the Canaries. We will miss her terribly. Lisa M (what an angel) wanted to do my feet again, so she and Barbara came over and we played scrabble, which Barbara won, and I got a great massage. I awoke today feeling incredibly good and, as I mentioned, went to the gym for the 2nd time in about two months! I think the foot massage has more therapeutic powers than I realized.

If the year continues the way it started – it is going to be an outstanding one!