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!