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!

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!

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.

A Whirlwind of a Week

It has been a very busy week.  We had a great time in the Adirondacks.  It snowed twice and I think the lowest temperature Michael clocked was 8◦F.  This was Michael’s first visit to upstate NY, Thierry’s second (but first during winter).  We toured Paradox Lake where Lauren and I vacationed for many years, and walked on Schroon Lake which was frozen solid.  It was very cold and blustery that day and when the wind whipped across the lake it felt like the temperature was around -10◦F.  Needless to say we didn’t hang outside too long.

On Sunday the sun was bright and the wind was down.  We went to the Lake Placid area and visited the remains of the Olympic village.  Michael took a bobsled ride and then we went onto the ski jump area.  To get to the top we had to take a chair lift.  I am not really afraid of heights until you put me into a lift or tram that runs on a pulley!  I managed to keep my breakfast down, and we enjoyed the view of the high peaks region.

We stayed at the Friend’s Lake Inn, one of my favorite places for many years.  We had a fireplace in our room which Thierry dutifully kept lit.  Our room was pretty large with great seating so Lauren and Michael spent a lot of time with us before and after dinner, reading and playing cards. I was very sad when we had to leave; I so enjoyed spending time with Lauren (and Thierry and Michael).

On Wednesday I got a call from Dad who told me he was calling 911.  He said Mom was very dizzy and light-headed and felt faint.  In actuality, it was time for what has become Mom’s semi-annual hospital visit.  They kept her overnight and we learned the next day that she had a stroke.  Fortunately it is a relatively mild one that took place at the bottom of the cerebellum.  Other than dizziness and a feeling of being off-balance, she has no other side effects.  She will need a couple of weeks in rehab, then we hope to have her back home.It’s funny, just two weeks ago I talked to my parents about getting a medical alert system in their home.  Mom looked at me and said, “I don’t think we need that yet.”  Dad just growled!  I told them both the other day that they are getting one – and they WILL wear the damn things!  Thank goodness my Dad was there with my mother when this happened.  Had he been out, my mother never would have been able to get to the phone. 

We had a great weekend, which included dinner with friends on Friday. I even managed to stay out until 11:00 (a big wow)!  Yesterday I vegged, and watched 13 episodes of Nurse Jackie.  Today TD and I heard a wonderful concert of French Baroque salon music at a local church.  Afterward we had a drink at a bar we used to drink at after work during the “good old days”.  We used to drink there until one of our gang got tossed (I won’t mention names).  I think TD felt very old, especially when he noticed that the bar tenders probably weren’t even born when we were there last.

I heard from Penn the other day.  They do have my tissue samples after all.  I had called Jefferson twice who said they had no record of receiving a request.  When I finally got through to the right person at Penn they said they had made the request to Jeff on the 8^th of February (the day after my appointment at Penn) and still had not received them.  A day later they appeared. I have no idea how they suddenly fell into someone’s lap, but they are there.  It will be about four weeks before I hear any results.  Now I have to keep myself from getting my hopes up.  Focus, focus, focus.

The week coming up is going to be another busy and exciting one.  Mom will go off to rehab.  My dear friend Barbara arrives on Wednesday from San Francisco.  We go to Lauren’s doctor appointment on Thursday when I will get to see the ultra-sound.  Friday we all go to the Barnes museum. Saturday is the Flower Show preview day when I’ll get to see other dear old friends, Judy and Margaret (Judy treats Lauren and me to the Flower Show). Saturday we find out what the sex of the baby is – we hope!  So, don’t be surprised if I am late in posting, again!



Challenging Technologies

I am technologically frustrated today:  A two-plus hour wait for my blood work at the infusion center; I can’t take photos with my cell phone (was going to post a picture of Thierry); and now I can’t get onto the Internet with my Netbook!  Guess I rely too much on all this technology.  It is hard for me to imagine me or Thierry in our 80’s complaining about not being able to keep up with technology, like the generation before us.  Maybe I am unjust in making that last statement.  My Aunt who is in her mid-80s is on Facebook and uses email.  The only thing that keeps my dad from using his computer is his eyesight.

But technology is our future, and biotechnology maybe my future.  I met with a doctor at Penn to get a second opinion on my treatment.  She was wonderful and spoke to me in a very positive, clear and concise manner.  While she did say that I have been receiving the same types of treatment they would have prescribed, she also mentioned a phase II clinical trial they are conducting at her hospital.  They are testing a cyclin dependent kinase (CDK) inhibitor, which interrupts cancer cell growth.  This is an oral agent that is well-tolerated with no side effects.  In order to qualify for the trial, a certain protein must be present in one’s tumor.  I signed a form authorizing them to get samples of my tumor.  I guess my chances are the same as winning the lottery…. I am trying not to get my hopes up.

When I say things like that, everyone says I am being negative.  Folks don’t understand that I can’t put my eggs in that basket, because you can only handle so many let downs.  I’d rather focus on what I am doing today, which is receiving my second cycle (two weeks in a row of treatment, one week off) of Halaven.  This new chemo regime really has been so much more tolerable than the last.  I was a bit nauseous with the first treatment, not at all with the second.  I was wondering if the massage I had the day after my second treatment may have had an impact on how I felt.  I really felt so much better all around after the second treatment that I asked the doctor for a prescription for massages – which also makes it tax deductible.  The massages also provide some relief to my headaches and shoulder pain… can you tell I feel guilty; like this is a luxury! 

But today, cancer research is all about breaking down cell make-up and targeting treatments to the individual type of cancer.  Triple negative cancer is a tricky one and has many variables.  No triple negative cancer is alike, so they tell me.  Often I have wondered if there is a researcher out there who would be willing to take a sample of my tumor cells and work on them in his/her lab to determine what makes it grow.   

Last week was my week off of treatment, and this week I felt almost normal.  Now, let’s ask all the powers that be that it has a positive effect on the tumors (or should I say negative effect on the tumors).

We leave tonight for Lauren and Mike’s, then tomorrow for upstate NY.  Just in time too, because the temperatures in Philly are going up into the 60s – way too warm for this time of year.  I hear we may get snow in the Adirondacks.

We have much to look forward to.

PS: I ran into a neighbor who works as a Physicians Assistant in the oncology center. I was lamenting the long wait for my test results and she reminded me it used to take two weeks for the same tests!!

Denial

I realize that my last blog was probably a bit of a downer, but that is the reality of living with cancer. You have down times and up times. If I only wrote about the good times, it would negate the impact of the disease on my life. It’s not all roses. It is not easy to tell yourself every day “live in the moment, enjoy each minutes, it is what it is!” It basically sucks and you make the best of it – recognizing that some days you just have to bitch, and that is okay.

Today I began to think I am in denial. You are probably thinking, no way. Yes, I know what this disease is about and I know the outcomes. When I feel good I really believe I can live a long(er) time. When I feel bad… well you already know about that. But it hit me today that I can deal with things in this capacity; however, when someone else infers I am doomed it really upsets me. This is what happened to set me (off) thinking.

I went in for my treatment, which went pretty much okay. We were there three hours, but the time went pretty fast. We chatted with my nurse and one of the other nurses and had some interesting conversations. The evil Physician’s Assistant (EPA) appeared on the infusion floor and stopped by to say hi and wreak her usually havoc on my day. She mentioned she speaks regularly with Dr. A, the new oncologist, and gets updates on my treatment. She said she knew I was on a new drug (didn’t ask me how it was going) and then I heard her say something like “well you know, this is the THIRD treatment plan you are on and we have to be creative. We are going through the available drugs… (while she was nodding her head from left to right with her right eyebrow lifted in a “you know what that means” sneer).

This occurred as I was enjoying a cup of Starbucks coffee which I haven’t had in a while (been teetotalling due to mouth and intestinal problems which have resolved since on new drugs) and munching on a fattening piece of iced-pound cake. I immediately felt like I was going to vomit. I promptly told EPA that it was nice talking with her and brought the conversation to a close. Although I have gotten over it, her comment bothered me for several hours. When my oncologist gets back, I am going to have to tell her I don’t want to see the EPA anymore. It has always been my philosophy to remove negative influences from ones environment – this is a major one.

So, does this mean I am in denial? Somewhat (and maybe that is a good thing??). I think what it means is I am not ready for anyone to say we can’t help you anymore. And I hope the one that gives me that news has the right amount of empathy and ability to follow it up with a how to plan.

We were fortunate to be given two gifts of bulbs over the holidays in little growing pots. One I failed to take a picture of. This photo is, alas, of the remaining one. They both provided many days of brightness during this gloomy winter. This acorn basket was given to us by Judy S, who also helped us with the planters. Soon we hope to see the bulbs burst that Jeannine planted in the planters when she was here in December.


PS: TD thinks I am being a little unjust in my description of the discussion with the EPA. Note, I said this is "what I heard". She has a tendancy to make comments like she is thinking outloud, with no real thought to how they sound or how they will be taken. Obviously, I take almost everything she says the wrong way!

Changing Up

It's Tuesday night and I have finally had enough to drink to put me in the mood to write. I guess that is an awful thing to say, "had enough to drink". Especially for a person who has tumors growing in their liver. But, so be it. Actually, I haven't felt really well enough in the last week to drink, so I guess this is a good thing?

I have been somewhat depressed - maybe because I feel the suckers pushing up against my rib cage, or maybe because I feel a bit more nauseus with this chemo - or maybe just because the weather is so f..ing miserable - or maybe a combination of all of the above. It is hard to stay positive when you feel shitty. All you think about is: "is this what dying feels like?"

Wow, I really don't like to write when I feel negative; but, oh well, this is how I feel, so I will share. You, my dear readers, may feel obliged to ignore this posting; and, that is ok!

The treatment went okay. Thierry and I thought we would be in and out of the infusion center quickly since the chemo is delivered in a syringe. Well, we were mistaken. We spent about five hours at the center between visiting with the doctor, blood tests and drug delivery. Hopefully this Thursday will be a breeze: no doctor, no zometa (the bone drug). By a breeze I mean two hours. We'll see.

The drug doesn't seem to drag me out as much as the other regime. Today I actually went to the gym and felt like I was pumping more than other days. I did take a nap this afternoon, but feel good now (at 9:30 pm). I do have to say, tho, that my stomach doesn't always feel so good - and yet again, my tastes have changed - meaning that I have to again find new foods that I feel like eating. Can you imagine what it feels like to have to cook or prepare a meal when you have a) no appetite or b) can't think of anything you "desire" eating?! For one who has always loved to eat, this is a travisty - and a major chore.

Well, let's talk about good things that happened this week. We finally got our FIOS installed. For those of you who don't know FIOS, this is an internet/cable/phone service provider. It is such a big deal because after finally deciding to consolidate all of our services, it took us several phone calls and internet sign-up attempts to get the order placed. Then, after we got it placed, the order was somehow cancelled by the provider - go figure. You would think that they wanted the busines so much they would jump on this opportunity for a customer.

The one thing about Verizon that amazes me is when you ask them a question the first response is always, "we can't do that." In this instance it pertained to my phone number which I have had for many years. I had to switch to Vonage to keep the number when I moved in 2004 which Verizon couldn't transfer from one part of town to the other (the same town mind you). In this age, where you are suppposed to be able to take your number with you, they still refused to give me the same number. Thierry handled the transaction (I didn't try to fight or get involved) - during which he was told "the number is not available." Of course not, I had it!!! Anyway, they assigned us a new number when we placed our order. So, being concerned about connectivity, I started to distribute the new number. But, when Verizon cancelled the order and we rescheduled, they gave us yet a new number. After almost an hour on the phone and 4 reps into the process, I was able to keep the number originally assigned and disseminated. Amazing, that a supposedly technologically advanced company like Verizon is so inept at processing such a simple request. To boot, they get indignant when you complain. The installation actually went okay and they even called the next day to see if everything was ok.

Two very nice things that happened this week: Lauren asked me to be at her March doctor's visit to see the ultrasound. I can't wait! And, my oldest and dearest friend, Barbara, is coming to visit from San Fran - at the same time as the doctor's visit. Barbara is Lauren's godmother - so it should be a joyous time:)

I have an appointment with a doctor at the Hospital at the University of PA on Monday to get an opinion on my treatment and to see what, if anything, is out there that I don't know about.

I am reading Franzen's book, FREEDOM, which I am struggling with. I have yet to find an Oprah pick that I like. Don't know why I thought this would be different. And for those of you who give a hoot, I love my Kindle. I know there are a lot of people who believe in paper - and I do believe they have their benefits and place, but the Kindle is really a convenient little gadget.

Here's hoping for an early Spring!