Sunday, October 31, 2010

Almost Made it as a Candidate for the Darwin Award

It was a blustery day on the Bay today (Friday). Thierry and I came aboard Curlew on Wednesday and took her out on Thursday, figuring this will be our last sail of the season. The temperature was still a balmy 70, and we had a good wind enabling us to sail down the Patapsco River and the Bay, We anchored in a quiet spot on the Rhode River just south of Annapolis and were able to enjoy a beautiful sunset.
We left the anchorage around noon this morning and headed east to the Wye River. Tomorrow we go on to St. Michaels where we will meet some friends who are driving down for the weekend.

Today the winds averaged 25 knots, with gusts over 30. The skies were an incredible blue, laced with puffy white clouds. The winds were from the NE, and the waves were pushing 4 ft and steep; high for the Bay. As we were crossing the Bay, we noticed a very large sailboat heading north. Thierry thought that she was a racer and wondered if there was a race going on. Before too long, the boat got closer – and closer. She looked to be about 60’ or so; black hulled with white stripes angled on either side of her bow. She flew huge Mylar, high-tech sails and had a crew of about 15, most of which were hanging over her port side as she made her way north.

We were on broad reach with the wind on our starboard quarter. The approaching boat was on a port tack – all this meaning we had the right of way. The racer was making incredible headway, and seemed to come up to our starboard side in a matter of minutes. Thierry seemed to think she was going to pass behind us – but from where I was sitting, this boat looked like she was going to hit us.

So, what did we do, I grabbed my cell phone to take pictures and Thierry went below to get the camera. Here we both are, cameras in hand watching this boat gain on Curlew – Thierry saying, well we have right of way and there really is nothing we can do! The racer was flying, literally- Thierry said she was planning, meaning her bow was out of the water, spray flying everywhere. We were so close I could see the expression on all of their faces – none of which looked panicked, annoyed (that we were in their way), or in any way interested in the two idiots standing on deck trying to take pictures.

Several thoughts ran through my head – the main one was: So when they recover our bodies, will someone comment on the fact that we were standing there taking pictures when we went down? Would they find the cameras which would show the point of impact? I really didn’t see how they could miss our stern. Oddly enough, I wasn’t afraid, but I sure felt like a bit of a dope. It made me think of those people who take pictures of natural disasters like tornados. Can you imagine standing there being pelted with 100 mph winds, hail and debris, taking videos of a tornado so you can get it shown on the local news? My next thought was – so I guess this is how one becomes qualified to win the Darwin award; too stupid to avert danger!

Obviously, since I am writing this, we came out of the incident unscathed. But if you could have seen how close this boat was and how fast they were moving – I don’t think they passed more than a few feet behind Curlew. You could hear the loud roar of their sails and feel the spray from their boat. It was amazing. As it goes, I never did get a decent picture because I had sunglasses on and couldn’t see to shoot. Thierry got a few as she approached and after she passed us. I have since learned where the video buttons are – so I’ll be ready next time!

It is now Sunday evening, and since I hadn’t posted yet, decided to finish out the weekend.

We spent Friday night in Dividing Creek off the Wye River. This is a very secluded and scenic anchorage. On Saturday morning we left for St. Michaels where we arrived about 11:30 a.m. We ate lunch aboard and headed into town around 1:00. Our timing was perfect, as our friends from Philly, Barbara and Barry, arrived around the same time, having driven down that morning. We met them later in the evening for dinner. Today they came aboard and we had a nice motor down the Miles River and a great sail back to St. Michaels. The winds were 25 knots gusting to 30 from the NW, so we plowed through on the northern leg of the trip. Fortunately the sun was blazing, so it kept the temperatures at a very comfortable 60+ degrees.

When we got back to the anchorage, we left for town and had a fun time at Ava’s Wine Bar where we had drinks and dinner and great conversation with a variety of bar partrons. Now, back on board, we are hoping that the winds die down enough tomorrow to make our 45-mile trip back to Baltimore bearable.

It has been an incredible  and very fun couple of days!
PS: I got a call this week from the pharmacy company who will be sending me my drugs. All I have to do is call each time I need a refill – and there is no co-pay! Now I just have to figure out how to overcome all the side effects But, as Christopher Hitchins just said in a recent interview on NPR: because the drugs are so toxic, they must be killing something – hopefully it is the cancer and not the rest of me.

Tuesday, October 26, 2010

A Brief Update

I am feeling a bit draggy as I write this, so reader beware.

I had my second treatment under my new treatment plan on the 21st and ran into a bit of a glitch.  My visit with my doctor went well.  I explained a few of the side effects I had after my first treatment which consisted of an itchy, facial rash and constipation (ugh!).  She seemed pleased that I was manifesting some symptoms as this was an indication to her that the drugs were working.

She told me a funny little story about a woman who was in a trial that my doctor was involved in some years ago for one of the drugs I am taking.  The woman had a very nasty, fast growing breast cancer that was not responding to the drugs of the day.  Fortunately, she responded well to this chemo; however, one day she came to the doctor's office in a wheel chair.  My doctor panicked, thinking this doesn't bode well for the study.  She asked the woman why she was in the wheel chair. The woman told her that the soles of her feet were sore, so rather than walk she decided to just get in a wheel chair.  The doctor was concerned that this side effect would prevent the woman from continuing in the trial.  When she told the woman how important it was that she notify her of the side effects, the woman stated that she didn't think this was a problem... especially since she was finally responding to a treatment, and she had no intention of stopping!

The drugs I am taking cause, among other things, painful feet (primarily in the balls of the feet).  Foot and hand syndrome as it is called, can cause the hands and feet to become red, swollen, painful and blistered.  Oh joy.  So far, the only thing I have noticed is an increase in the neuropathy in my feet. They have also become very sensitive to uneven shoe-soles and seams in socks, and it is very uncomfortable to walk barefoot.

After my meeting with the doctor, Thierry and I went to wait for my blood test results and treatment.  About 11:00 we were informed that my white count was low which could prevent my receiving treatment.  Another blood test was taken - this time from my arm rather than from my port.  The test results were vastly better and I subsequently was treated.  We finally left the infusion center at 4:30 pm - some 8.5 hours after we had arrived! 

Since my white count was low, my treatment plan has changed - at least for this week.  I also found out that one drug I am given - Zometa - which builds bone and has been shown to be very effective in treating bone metastases - can only be administered once a month.  I am now receiving treatment every three weeks, so I will have to arrange to have this infusion done on an off week.  Not a real problem, just didn't realize this until my infusion nurse informed me.

So, I am learning how to adapt to the new treatment.  I find that the day after I feel a bit nauseous.  This is something that really is not treatable with anti-nausea medication. Many of the anti-nausea medications which I took in the past made me dizzy and sleepy.  It is something I can deal with and when really necessary, take a few puffs of a joint (yes, a marijuana cigarette). This not only relieves nausea but helps my appetite and calms me. Often right after treatment I become restless and suffer what could be described as restless leg syndrome, only it affects me all over.  By Sunday afternoon I begin to crash and on Monday I don't feel like doing anything other than staying in bed - but I won't let myself succumb to that - totally.

I have also noticed that my esophagus is becoming sensitive - especially right after treatment. By that I mean I feel it when I drink something hot.  I am not sure which drug is causing this, so am not sure what to do about it. I take my pills with food, rather than after I eat, as it seems to help me digest them better.  My tastes are beginning to change - again, and my appetite has dwindled. 

Regarding the pills, I was told by the social worker that my insurer did say they would pay for the drug under the medical (chemo) portion of my plan. The problem is they have no mechanism in place to distribute a drug that does not go through a pharmacy plan.  In essence, there is no way to bill for the shipping and handling.  This is all great, except I still don't know when, how or where I will get my drugs.

I was hesitant to write this blog as I felt it would be a downer, but then, this is what some of my days are like.  Since my treatment on Thursday, I made two trips to the doctor with dad, we had company for dinner and actually had a good time with friends watching the Phillies lose, made dinner at mom'n dad's on Sunday, went to the gym, and went to a concert last night.  Today I had a client meeting which was the kick off of a new project and tonight we have our book club.

Hey, it's been a good week.

Monday, October 18, 2010

Bedside Manner

It’s late Sunday evening and I am under a lot of stress. The Phillies lost their first game in the playoffs and are playing terrible baseball tonight. Thank goodness the pitcher is doing a decent job, although he just gave up a run. I am not sure how long I can sit here and write, but will give it a whirl.

It seems when a subject comes your way twice in a few weeks, it is one you should write about. A friend brought my attention to an article in the local paper written by a spouse who accompanied his wife to a doctor’s appointment. If I recall correctly, she was diagnosed with cancer (I believe breast), and he was shocked by the doctor’s attitude. From what I remember, the doctor’s attitude suggested there was little hope for her. They subsequently went somewhere else, but the point was that the doctor showed little empathy for the patient.

When I was at the breast cancer conference last week, one of the speakers was a survivor who was there to talk from the patient’s perspective. She told the story of her visit to the doctor when she received the news of her diagnosis. The female doctor informed her of her triple negative breast cancer, then basically gave her a bleak prognosis and also showed little empathy. The patient proceeded to get other opinions, landing with my doctor who provided some “hope”.

I have had this experience myself, both in dealing with my own disease and that of my sister. When Jean was diagnosed about three years after my first bout of BC, we went to the pros at the Hospital at the University of Pennsylvania. Jean had a stage III cancer, based on the size of the breast tumor and the fact that it had spread to her lymph nodes. The docs at Penn basically wrote her off – and proceeded to talk about bone marrow transplants (the drastic treatment that was given at that time when the disease spread). Then she saw the man who would become her surgeon, Dr. Schwartz. He looked her square in the eye and said he could treat her and shared his experience with this type of disease and basically, gave her hope; not a promise of a cure, but hope.

When I spoke with an oncologist after my latest diagnosis, I looked at his face, and although he emoted much empathy, he also looked defeated, tired and worn. Even his voice sounded glum. I am sure after years of treating cancer, a person must become somewhat jaded and at times, feel defeated; however, this was not an attitude I either needed or wanted. When I met my current oncologist (the same as the guest speaker’s), she took my hand, looked me in the eye and said “I can help you”. She didn’t promise to cure me. In fact, she didn’t make any promises; she just projected confidence and gave me a feeling of hope.

The latest unpleasant doctor experience I had was with an ENT. Suffering from the effects of the chemo, my sinuses were a mess. The doctor I saw barely looked at me, spoke to his intern the entire time – even gave her my instructions, ordered an MRI and never followed up with me. You know that was the last time I ever saw him – and I will never see him again and will be sure to tell everyone how awful he was.

Are doctors so busy that they don’t have to care about treating patients as human beings and with a little dignity? Many doctors over-book and make patients wait for hours in the waiting room. Obviously they haven’t heard about customer service. But if most patients are like my parents, things like this don’t matter – my parents find a doctor and stick with them, no matter what! They are of the era before Google! When the doctor tells them something, it must be right. When a doctor tells me something I Google it; then I go back to the doctor and start questioning.

Now, I know some very good, very fine doctors – so this is really a generalization. However, I am sure many of you would agree – it feels like the norm.

The article mentioned a movie starting William Hurt (called “Doctor”). He is a doctor who is diagnosed with throat cancer. He gets to experience first hand what his patients have dealt with and it is this experience that changes his perspective. The author suggested that all doctors see this movie. I haven’t seen it, but my friend, a nurse, agreed with the author.

On a better note, the Phillies did win the ball game. Today was a wonderful day in the city. We managed to get the pictures of the karaoke party from Lauren and I figured out how to upload them to YouTube. So, for those of you who were there, check yourself out. For those who weren’t and want a chuckle, take a look by going to YouTube and doing a search on iwanaberma (until I figure out how to link them to this blog). Mind you, I did not detect any candidates for American Idol; but what a wonderful group of people they are!

Oh, I understand that the pill thing has been straightened out – more on that next week when I find out what is really going on.

It’s been a fine day!

Sunday, October 10, 2010

Cleaning Day

The last few days have been absolutely beautiful ones in Philadelphia. So, what did we do? I went to a breast cancer seminar for Triple Negative Breast Cancer in African American Women from 8:30 – 1:30 yesterday (Saturday), and TD went to a simulcast at a local movie theater of a Metropolitan Opera performance of Das Rheingold in the afternoon from 1:00 – 4:00. This morning I went to the gym, then decided to clean the condo – and of course, we had dinner at mom’s tonight – prepared by Jean and it was wonderful!

We were supposed to go to the Annapolis Boat Show and spend a couple of nights on Curlew, but some things came up with Thierry and we decided to postpone until Monday, the last day of the show, and one of the more interesting. You get to watch the break-up of the show which is like watching a ballet on the water only the dancers are the boats, with lots of near misses – but often a crash or two – an event in itself, and a big party. Watch this video from last year’s show:

Our housecleaner injured herself several weeks ago, and although she offered the services of her sister, I haven’t been motivated to call – until today. Actually I think it happened (her injury) at the end of August, how time flies! Thierry was away then, and on occasion I would be inspired to get off my duff and take a swiffer (dusting thing), and clean off the furniture. I even ran the vacuum a few times – especially before the book group met at the condo.

Mind you, my housecleaner doesn’t clean like I would, but she generally gets the basics done. This morning as I was vacuuming, I realized how much I really don’t like cleaning. I especially have a hard time with vacuum cleaners. Having had several in my lifetime, I have yet to find one that isn’t cumbersome and unwieldy. I have had up-rights and canisters, but no matter what size or shape of machine, I feel like they are out to get me. I mean, my legs get caught up in the cord, the hose gets twisted the wrong way, the canister either climbs up my leg or ends up crashing into furniture or turning upside down.

Thank goodness we don’t have a “lot” of stuff around (knickknacks) because moving things drives me nuts. As it is I have to skirt the edges of the bookshelves in both the library and office, thinking the whole time that there is an awful lot of dust that’s hiding in and among the stacks.

For weeks I had wondered why the condo smelled so chemically toxic every time the cleaner was here. I realized why when I opened a bottle of lemon scented Mr. Clean. Ugh! I thought I was going to lose it – the smell was incredibly offensive. I dumped the bottle down the drain and swore that’s the last time I buy that stuff. From now on I am going green and unscented if that is possible! Swiffer floor cleaner is next to go out of my cleaning materials inventory. These smells are bad enough under normal circumstances but when you are on chemo, the intensity is magnified by about 100.

Although I didn’t scour the shower, I did manage to clean a lot of things that my housecleaner consistently misses – so I feel like things are in good shape. I will give her sister a call tomorrow, and make sure at least once a month, I go through and catch all of those misses.

There have been two times in my life when we hired a cleaner who lasted only a few months. I was never happy with their work. I used to pay Lauren to help with cleaning when she was a teenager, and she did an amazing job when she got down to it. She even started cleaning for her aunt, and did some house cleaning when she went away to college. Does anyone really think their house cleaner does a good job? The answer is, they do if they get the basics done and lighten your load at any step.

The seminar I went to was good. I walked away with two bits of info. One has to do with overall survival rates of folks with my type of cancer, which isn’t as horrible as I thought. The other was about a new drug in the pipeline I need to explore. My sister Jean came with me which really made the whole thing easier for me – she was great company.  She even got up at 6:30 a.m. on her day off to come into town!

My birthday was on Wednesday and we had great fun at a Karaoke Bar in China Town. Everyone sang, danced, laughed and seemed to have a really good time. Definitely something we should do more often. It actually is a boost to go dancing and just letting loose – something I never did/do enough of!

They still haven't been able to straighten out my chemo-pills.  Fortunately I was able to get a stash so I am okay for a while. Amazing, one hand of the insurer does not know what the other is doing.

It has been a wonderful week, the house is sparkling and the Phillies are winning in what could be the last game of this series – making them division champions! Go Phills!

Saturday, October 2, 2010

Between the Two of Us

When someone tells you something in confidence, who do you tell? Do you keep it a secret from everyone, or do you have a list of your own confidants that you share the secrets of others with?

This is a conversation that Thierry and I have had on more than one occasion. I will admit that there are things I am told that I won’t tell anyone. Especially if the person says, “this is strictly between you and me”. Then there are things I might share with those who I consider a disinterested third party. I’ll share the story and most likely won’t name names. Then there are one or two people (namely Thierry and Lauren) I may share someone else’s secret with, especially if I think they won’t really care about the subject matter – or if it is something I want to work through. I know if I tell Thierry, the story will go no further – as a matter of fact, he most likely forgot about it three minutes after I shared the tale.

But then who will Lauren share the secret with? Will she keep it to herself or share it with her husband? Where will it go from there? I know there are things I absolutely cannot share with my sisters. And please sisters, do not take this as a slight. There have been times when things have been said that should have not been shared – period. I am sure we are all guilty – me as well! It just is how it is among family I guess.

Thierry’s tongue-in-cheek theory is that if you tell a woman something in confidence it is like a women saying no when she means yes (this statement could incite a riot!). Meaning that by saying the subject is confidential you are giving the go ahead to spread it around!

I do try not to talk about people’s personal lives with others. I am guilty of talking to one of my physical therapists about people in my life who cause me angst or who I believe I may have caused angst - and named names. Of course, I justify this by saying it helps me work through the issues that caused the angst in the first place – the listener just doesn’t happen to be an actual psycho-therapist.

I like to think when someone tells me “this is strictly between the two of us”, that it stays there – between the two of us. Conversely, I like to think when I tell someone something in confidence, it stays there as well. Perhaps Thierry would say if you don’t want someone to find out about something, just keep it to yourself.

I began my new treatment on Thursday. I receive an infusion of Avastin and Ixabepilone (Ixempra) which takes a total of 4 hours to administer. In addition I receive pre-meds and Zometa. It was a long day! The Xeloda issue (those are pills) still has to be resolved. The manufacturer told the social worker that it is covered under my medical plan. At first they (the hospital) tried to submit a prescription to the regular drug store who told us that they could not bill the insurer and it would cost me $5,000 for a 30-day supply. The social worker then tried the next level of pharmacy – who informed me yesterday that they cannot work with my insurer. It is now being reviewed by yet another pharmacy. Fortunately I was able to get my hands on a supply which should last until this issue is resolved. (Next stop Canada???)

It was also fortunate that I read the brochure and info sheets on the drugs. I learned that I am not supposed to drink grapefruit juice (which I have been doing lately), nor am I supposed to take folic acid supplements such as what is included in my multi-B vitamins. Keep this in mind the next time your doctor prescribes new medication for you!

The picture at the top of the page is of our rock-on-rock sculpture. We collected these rocks at the Roque Island Archipelago this summer in Maine. We thought they would make a fine addition to our balcony – and they have.

It has been a beautiful few days now that the storms have passed, and a great week – this is news you can share.