Monday, March 21, 2011

Keeping in Touch

I’m sitting in front of the TV watching the Food Network waiting for a program to come on that will feature one of our favorite local restaurants.  I am thankful that I haven’t become addicted to this channel, because I became so hungry while watching one of the programs that I grabbed the chips and some cheddar cheese and chowed down (and this is after dinner and an hour before bed)!

The channel I am addicted to is HGTV – the home and garden network.  I love to watch the show where they stage houses for sale and the international home searchers show.  In this program they go into countries all over the world and look at houses that range from “they should be torn down” to “unaffordable for the common man”.

A few weeks ago we met friends of ours at a favorite BYOB in a cute town in the suburbs.  My girlfriend is living with metastatic breast cancer which is being controlled by herceptin.  Unfortunately she has had a few medical problems stemming from her treatments.  Most recently she suffered a broken vertebra which is causing her much pain, prevents her from driving and she needs the support of a walker.

It is difficult to see such a high-spirited, fun-loving person have to deal with all of this “suff” but she does so with a sense of humor and continues to keep herself as active as possible.  She always had a lot of friends, and I was fortunate to be included in a celebration of those friendships during a party she threw a few years ago.  She had a very tight circle of women friends that she had known for a long time and had frequently traveled with to many fun places. 

During our conversation she mentioned that she hadn’t seen or heard from some of her friends as much as she used to (something to that effect).  Her body language and facial expression caused me to think that she was saddened by that.  I wonder how often that happens to folks who become ill or eventually become less mobile or somewhat incapacitated by their illness.

I know it is extremely difficult to speak with someone who has a potentially terminal illness.  What do you talk about? What questions do you ask? What topics are off limits?  Maybe for some it’s just a matter of not being able to deal with watching a friend suffer or go through the physical changes that often come along with a difficult disease.

I have come to appreciate how important and therapeutic it is to maintain connections, friendships and social activities while going through this process.  There is a part of me that believes as long as I keep moving, I will keep living.  Now, probably more than ever, my friend could use her friends to keep her moving forward.  Even though she is on major pain killers, she is aware of those around her, maintains conversation, remembers your family and hobbies, and puts you at ease by asking questions and showing her interest.  She doesn’t focus on her illness and seems genuinely glad to hear what others have to say.

The point of all this is that we shouldn’t  just assume that because someone is very sick or in pain that they don’t want company – or that if we go to see them, we will automatically walk away saddened and depressed.  I suppose that at some point, if I am really ill, I won’t want company.  Until then, I hope you all keep in touch.  That reminds me - I have a call to make tomorrow!

Sunday, March 13, 2011

Up, Down and All Around

Well, I passed the test.  I mean, I tested positive for the protein that makes me eligible for the CDK inhibitor study at Penn. 

I had received a call on Monday from one of the nurses informing me that I tested positive.  Then I heard from the doctor (Dr. D) Thursday morning – the day of my regular chemo treatment.  She reiterated that I was eligible and we discussed my options.

Usually oncologists like you to go through three cycles of a treatment plan, then have scans done to see the results.  That day I was to begin my third cycle of Halaven.  Dr. D said I could either continue with the Halaven or enter the program.  I asked her what she would advise had I been one of her patients.  She said if a chemo regime is working, then it is best to stay with it until it stops (working) – which eventually it will. 

I asked if she would talk to my oncologist (Dr. A), which she did that morning.  It was decided that I would continue with the next two doses of Halaven, then have scans to see how things are.  If the drug is not working, I will enter the study.  As it goes, I would have to wait 28 days after my last treatment before I could begin the study drug. When I have the scans it will be about 12 days after my last treatment.  I was concerned about what would happen if the Halaven is working now, but stops in the next 3-6 months.  Both doctors feel I should still be able to make it into a study within that time frame.

I can’t tell you how anxious I was when I received the call from Dr. D.  My thoughts ran everywhere from should I switch to what if I switch and it doesn’t work; what if I have an allergic reaction; what if it doesn’t work; what if it works – for how long would it work. And then of course, all the other questions: who else is on it; how many breast cancer victims; how well has it been working; how does it work, exactly… etc.  The level of anxiety was staggering.

As fearful as I was to stop what I know and go to something so new, I was (I think) a bit disappointed to learn that I will have to wait.  New questions came into my mind like: could this really eliminate or put the cancer into a longer term of remission; will I, in fact, still be eligible for this treatment at a later date; am I staying with a drug that still has side effects (like neuropathy, hair loss, digestion problems, watery eyes) when I could be taking a drug that is just as good with no side effects?

Trying to contain all of these thoughts and emotions can be daunting, and sometimes leaves me short-tempered and irritable – but Thierry tolerates it all pretty well.  Now to wait….. time seems to stand still while I wait for the next scans.  A lot to be afraid of, a lot of questions unanswered.

On a lighter note, Dad seems to be using the medical alert system, at night anyway.  Mom comes home on Wednesday.  She has done very well at rehab.  The weather is warmer, and Jeannine's bulbs are starting to sprout in our planter!

Sunday, March 6, 2011

It's A.....

It’s been an amazing week.  We got mom tucked in at rehab on Tuesday.  They started her in therapy right away - even keeping up on the weekends, and she has been pretty good…. That is until she got a roommate who she decided she didn’t like.  All in all she is doing well.

Barbara arrived Wednesday night. It is amazing how even when you haven't seen someone for a long time, you pick right up like you were together just the day before.  We met Lauren and Michael for lunch on Thursday, then went on to the clinic where she was to have her 20-week ultra sound.  When I was pregnant, they didn’t give you ultra sounds – I don’t even know if they had them then. 

The amount of detail they show is incredible:  the brain, the heart – beating, the spinal column.  When the doctor was exploring the baby’s heart he put on the sound – incredible.  He also showed us a 4-D image – amazing the detail that you can see!  Then he did a search of the genitalia.  A friend of mine gave me an idea of where to look on the image to determine if it was a boy.  It’s very difficult when you don’t have a clue what you are looking at.  Finally he said, “see those three lines, that is the labia…. It’s a girl! 

My first comment was: “are you sure”?  My second exclamation was: “your aunt Jean said it was a girl”.  One night at dinner she took her necklace off and held it over Lauren’s belly.  At first it swung from side to side (indicating a boy), but then it moved in a circle. She tried a second time and that time it went right into a circular motion – indicating a girl.  When this came out of my mouth, the doctor replied: “so why do you need me?”

We are thrilled. All the Taraborelli women are anyway – except maybe mom – she thinks we already have a lot of girls in the family, notwithstanding the fact that she has three grandsons and two granddaughters.   Men dominate Michael’s side of the family.  There are only two granddaughters out of eight grandchildren.

Lauren and Mike have chosen the name, Mary Jane, after the baby’s two grandmothers.  Now to get through the next 4.5 months!  I am a nervous wreck – about everything.  Everything from how  healthy I’ll be, about Lauren’s health, and of course, about the baby.  I am trying hard not to dwell on anything and to stay positive.  One day at a time, one day at a time, one day at…….

The week didn’t end there.  When we left the kids Barbara and I picked up medical alert systems for our parents.  We went over to my parent’s house to set up theirs.  Set up was easy and we tested the system.  Dad stood by and pressed each alert button and listened each time the service called in to verify that the signal was received.  I must say he looked skeptical and resistant.  My sister does not think he is wearing the alert.  I can only hope he gives this some serious thought at night, especially while he is alone.

On Friday we (Barbara, Thierry, Lauren and I) had lunch, then went to the Barnes Museum where Michael joined us for a tour.  Later that evening, Barbara, Thierry and I enjoyed first Friday and toured a few of our favorite galleries.  We ended the evening at a local cheese shop which was just bought by our friends, Lisa and Kirk.  The shop opened shortly after Thierry and I moved to Philadelphia about four years ago. Gradually, the amount of cheese dwindled and the shop survived by selling sandwiches and light suppers.  We were thrilled to walk in and see a case full of a wide variety of reasonably priced cheeses.  It will be great to have this type of shop in the neighborhood.

Barbara left early on Saturday morning and I headed up to the Reading Terminal market to meet Judy and Margaret for breakfast before the Flower Show.  Again, it is amazing how you just pick up where you left off with old friends.  Lauren joined us and we strolled the market and did some shopping where Lauren treated me to a fun pair of earrings.  We then went to the Flower Show whose theme this year was Paris.  We walked into the exhibition area to a 60’ high replica of the Eiffel Tower.

I really don’t know if there is another flower show in this country that compares to this one.  It draws attendees from US and abroad and exhibitors from 26 states.  We always enjoy the exhibits, especially the miniatures and the jewelry and purses made completely from plant material.

Saturday night the family gathered at mom's rehab facility to reveal the baby’s sex to the whole family.  Sandwiches, salads and cupcakes were served along with a little bubbly (and of course, a flask of Manhattans).  We had a grand time.

Today, Sunday, I am taking a break.  I’ve had a bit of a sore throat for a few days now and am feeling a bit tired.  It is a rainy day, so a perfect one to veg in front of the TV.  Looking forward to a much quieter week ahead, and still enjoying the high from the last.

Note: The family pictures taken at the party are by Juan.