Friday, July 31, 2009

A Draggy Friday

For some reason I wasn't up to snuff today. Although I was able to get up, shower, make the bed, breakfast, etc. without the usual, frequent 10-minute breathers, my mood wasn't (isn't) good and my general energy level is low.

It took me a while to fall asleep last night (Mahler came to the rescue yet again!). I guess I thought me writing about my control issues would help lessen the thoughts going through my head. I also think writing on the computer late at night (this means after 9:00 p.m.) keeps me awake. I can do some puzzles, read, watch TV and fall quickly to sleep, but if I am on the computer or working on a difficult sudoku right before bed - I am wide awake for hours.

My good friend and business associate came over this morning and we talked and did some work. It felt good to use my mind, and it is always fun working with Ann. We started to talk about food and diet and weight - all those good female ailments - but we'll need to pick up that conversation at another time. I was supposed to go to my sister's for healing touch, but just couldn't get myself into the car and out to the burbs. I started to do some exercises, and when Thierry came back from visiting C-Minor (our little power boat we keep on the Delaware), we both went down to the gym. I did 20-minutes on the elliptical and then did an upper body workout on the machines. It was pretty funny - I had to power way down - using 10 and 15 lbs!!! But I did it - now to do it again tomorrow.

I got frazzled over dinner. Probably because I decided to cook the hot peppers we just got from Dad's garden at the same time I was preparing the meal. Some of you are familiar with these, but I'll explain for those who aren't. Dad grows a brand of pepper called a Hungarian Hot. These are yellowish-green, and long and thin. Mom's way of cooking them is to take out the seeds, slice the peppers into rings, then fry them slowly until they turn black. The peppers can be pretty tangy - and these are. Anyway, the last few times I have cooked peppers they did not get crunchy. You see crunchy is important because we mash them and put them in almost everything. We add them to broccoli-rabe cooked with egg and cheese (or not), other vegetables, rice, pasta, sandwiches, eggs, the list goes on.

Thierry again came to my rescue and helped keep an eye on the peppers, turning them when necessary so they blackened evenly. This is a good thing, because he really likes the peppers and just last night, asked my mother how to cook them. They came out perfect.

I feel so much better when I write. Going over even the tiniest things that happened during the day, like Thierry and the peppers, makes me smile and lifts my spirits.

Today was another very good day!

Thursday, July 30, 2009

Thursday in Brief

Today was a very good day.

Walked to breakfast (thru a hissy-fit because the eggs weren't cooked and annoyed the hell out of TD - see I am really not a nice person).

We took a taxi to the oncologist office where we had a chat with the PA who confirmed that I did, in fact, receive the proper treatment and assured us that I will get a call from the doctor when she gets back. Got a blood test - hemoglobin was a 12!

We walked to lunch, to the drugstore and back home! A total of 20 blocks! I then drove us to mom's where we had a loud boisterous dinner. Lauren and my parents cooked a marvelous meal. My sister Jean got back from the Cannaries. We celebrated Ed's birthday (Lauren's Father-in-Law), Gus joined the fun, and I ate EVERYTHING - even the cake! (everyone is telling me I have to eat and gain weight).

Yes, it was a very good day.

Working it Out

Instead of talking about my day – which actually was a very good one – I'm going to do a bit of a brain dump in order to work out an issue which came up today and is causing me some angst. When I get anxious, I get pains in my abdomen, so I'll do anything to work out the tension.

My dilemma is this. There is a part of me that wants to control who knows about my illness. If I were you I would say, “what, is she crazy? If she is so concerned about who knows about her illness why is she writing a blog that the world can see?” A fact that Thierry and I discussed at length when I started this.

I tell myself, there is a difference between my letting a group of close friends and family (whom I trust to share this with like-minded people) and total strangers in on my “secret”, and having others take my situation and use it to intensify the drama in their lives. You know the type of person I'm talking about, the one who can't wait to get on the phone and call everyone and say “did you hear.....”

I also realize that sooner or later I'll have to share a bit about my cancer with clients and business associates, but I admit – I am not there yet! I also know that ultimately, everyone connected to me and my family on any regular basis will know about this soon, if they don't already.

The thing that annoys me about all of this is why do I even care? Why am I wasting energy thinking about what others think, especially at this point in my life! There are those that relish gossip and being the bearers of rotten news. That is their life and they have a right to live it whatever way they choose. I should be able to brush these thoughts off – be above all of that.

One thing I do know is that I don't want sympathy or pity, and I really don't want people to be uncomfortable around me out of fear of saying the wrong thing. I don't want people taking my illness and making it theirs! I need to be in control!!!!

Ooh, so back to the beginning - it's about control?? This is one situation where you have very little control (see stories about treatment!!). I do try to tell myself that through meditation, etc. I can get some control over these cells growing ferociously in my body, but..... who really knows what's in the cards.

Thanks for reading my rant (or not). I think I feel better.... but also think I need to do some more work. Page 41, “The Power of Now”

“All problems are illusions of the mind. The mind unconsciously loves problems because they give you an identity of sort.” Maybe now is the time to figure out who Mary really is (or who she can be).

Wednesday, July 29, 2009

Another Flip-Flop

Before I get into my day, I hope you all noticed Comcast's comment posted today in response to my story about Thierry's adventures with Comcast. Well there is another chapter to that story, but before I get into that I must tell you all that one of the things I adore about Thierry is his lack of fear in getting his hands dirty - in fact, I think problems (like electrical, plumbing, carpentry, hooking up electronics) really get his juices going. He is amazing in that he can fix almost anything and is always prepared (like a scout - he carries rope and a shackle with him at all times along with either a big swiss army knife or a leatherman). I love to watch him climb, crawl or squeeze his 6' frame in some tight space to make a repair. So you can imagine that when Comcast said he could pick up the hd tv box (rather than having it delivered at a cost of $18), he opted to take care of the matter himself.

Well he went down to the Comcast center again today. He did manage to get a box and a remote. The box was huge which many of you may know - and did not quite fit in his backpack. Luckily he did have his rope and was able to tie everything together for the ride back. Upon his return he proceeded to start set-up procedures, tearing apart our media cabinet, disconnecting wires, etc. Of course, there was no manual with the box or remote. Not to be easily discouraged (I would have been on the phone screaming), he got on line and tried to find a manual on the internet. He found the manual, but still did not get the box to work. After some additional wire swapping and button pushing he picked up the phone and called Comcast. With me yelling in the background, the rep tried to walk him through set-up which at first was again not successful. After a bit, the TV worked, the box worked, but the remote did not, so we operate each device through separate remotes.

Some of you may be thinking - so this is a problem? I thought the whole episode was very funny. A huge organization like Comcast that has some unfriendly people at the service center can't get a simple thing right (this is the 2nd remote in 2 days that doesn't work) - and the difference in the way a man and a woman handle a problem - I would have just paid the $18 and had Comcast do the install from the beginning. I appreciate Comcast's offer to help straighten things out - Thierry asked them to send a new remote - I'll drop them a line.

So, now that we have a clear example of how differently men and women would handle a situation, I'll move on. The reasons for the title of today's post is that I am now NOT having a chemo treatment tomorrow. Maybe I should post that Jefferson Oncology is where I'm supposed to be getting treated (maybe they scan blogs for info just like Comcast). Dr. Mitchell, the oncologist is away until Monday - but her PA called me yet again today to tell me that she spoke to Dr. Mitchell (I guess again since she said she spoke to her yesterday to confirm that I WAS to have a treatment on Thursday) who said that WE were correct - the treatment program was to be every week - but since I had such a high dose I can't come back for two more weeks. I can't wait to hear how the doctor is going to explain this one. Fortunately I have an appointment at Fox Chase next Wednesday!!! I did schedule an appointment at Jeff to have blood work done to make sure my counts are good - I have been very fatigued - the mornings being especially difficult.

But, I feel much better by the afternoons. I worked a little today. The rash isn't horrendous, but we'll have that checked out tomorrow as well. I even started dinner tonight, which TD finished - and he cleaned up!!

Neighbors stopped by for a visit and brought a beautiful orchid. I wish I could post pictures so I could share her with everyone. My sister grows the most incredible orchids - I'll have to consult with her to make sure this one thrives as well.

Thierry and I started to listen to the cd collection again (yesterday and today). We heard Carmina Burana - music from a medieval manuscript from the 13th century; songs about love, eating, drinking, gambling) - not unlike today's music. We also listened to Treasures of the Spanish Renaissance. All very nice. This series, which will last for several days if not weeks, are collections from various composers from the Renaissance.

I was speaking with a friend yesterday about meditation and its benefits. I have had little trouble sleeping, but when I have, the meditations help relax me and do put me to sleep. Well, last night I couldn't fall asleep. The meditations were just not working and my mind kept wandering. After tossing around for a while I put the headsets back on and played Mahler's 7th Symphony by the Royal Concertgebouw Orchestra. It worked!

Today I am working on being in the moment, trying not to think about outcomes - and it was a very good day!

Tuesday, July 28, 2009

Turn-A-Round Tuesday

Wow, I actually took a walk outside - went across the street with Lauren and Thierry and sat on a park bench for a little while, then back inside again.

It must be all of the good nursing care I am getting. I spoke with my brother yesterday about the disgusting Whey drink and he suggested adding some maple syrup. So this morning (and again this afternoon), Thierry blended a banana, the whey, almond milk and maple syrup - added crushed ice and let me tell ya, it was pretty darn good!

Barbara picked us up some items from Trader Joe's and brought along some wonderful muffins which she says are very healthy, they are truly delicious. Doris made us stuffed peppers with turkey, rice, and raisens - even brought salad. Lauren came over and put it all together. How lucky I am!

The only scary thing that happened today was the phone call I got from my oncologist's PA. She finally spoke with the doctor and I AM supposed to get a treatment each week for 3 weeks! The scary part is that all the nurses at the hospital, including the PA, said that I received a dosage that should only be given every 3-weeks. I scheduled the appointment for Thursday, but we will insist on talking to a doctor before anyone sticks a needle in my port! I am convinced I need a procreate shot because I have very little energy, so I hope to at least get that. I've also developed a bit of a rash, and am itchy. We'll see what they say about that.

Well my not driving has caused Thierry to get his bike out. Yesterday he rode to Whole Foods and today to Comcast to pick up our new HD box - only to be told he couldn't have one since his name wasn't on the bill (this after he called and inquired as to just what he had to do). So he came back with yet a different box and a different remote and nothing worked. This is why we all love Comcast. The good part of the story is that TD is finally getting back to biking - something he has missed for a while now.

Judy mentioned a Lance Armstrong book in her comment. I read his (first) book about his cancer and treatment and thought it was very well done. He describes his illness and treament (which was pretty dreadful), but the book is not depressing - and, of course, we all know the outcome.

All in all, today was a pretty good day.

Monday, July 27, 2009

Blue Monday

It's been a hellish 2 days but I understand it is only going to get worse as I continue with treatments. It seems when I eat I actually feel better albeit for a little while. I look like my almost 89-year old father hobbling back and forth from the bedroom to the sofa to the bathroom. So far the nasuea hasn't been too bad. The pains and the inability to stay comfortable for very long makes the day tedious. I try not to moan too much....:)

They say I should eat a lot of protein to counter the effects of the chemo. Not a very easy thing to do. Theirry took a trip to Whole Foods on his bike and picked up some Whey and made me a drink - ICK! But I drank it! We'll need to work on this tho - because as I move forward with my treatment I may be living off the stuff. Yesterday Lauren and Mike came over on the way home from the shore and made pasta and meatballs - with real beef - it was a great dinner. I had one of the meatballs for lunch today. I've also been eating a lot of fruit - cantelope tastes particularly good right now.

When I feel well enough I'll think of some dinners I can make and freeze - problem is I won't know what I'll feel like eating. The usual stuff I make for the boat may not be appealing - like chili and meatsauce.

On Saturday my friend Faye came over and brought me a cute hat (and some cupcakes which seem to be magically disappearing).

Lot's of you have been sending me some funny and interesting stuff to read. I promise I'll get to all of it - reading is difficult when you have your head stuffed in a pillow! I do manage to go on the little net book to read your comments and emails - this makes my day - thanks so much. I know many of you are having trouble posting comments to the site. I think it wants you to register with google or have a google account, which is free.

Today was a difficult day - but not as bad as yesterday!

Sunday, July 26, 2009

What happened to Saturday

It's Sunday morning and I am writing on our new little net book (Toshiba) that we bought yesterday, along with a 40" flat screen TV and an mp3 player. You see, it is becoming tradition that when I go on chemo, we buy a new TV.

Yesterday started out slowly. I felt pretty lousy - a bit shaky and very tired. So, after breakfast I went back to bed and meditated for a bit. When I got up I felt much better, and even hungry, so we had lunch then went off to Delaware. We've been talking about getting a net book for a while, and thought it would be a good way to pass the time when I get my various infusions. It is the sweetest thing! Silver case, weighs in at 2.98 lbs. and has a 160gb hard drive. Built in microphone and camera. Totally cool.

By 7:00 PM or so things went downhill. Funny how each chemo is different. I felt somewhat nauseous, but it was the shooting pains all over that was truly a new experience. Amazing how they traveled, at one time in my neck, then another in my knees, then in my side, then in my calve - Ugh! Not fun. I did manage to sleep well enough, and meditated for a bit this morning. If nothing else, the meditation helps keep me calm and able to deal.

I think today is going to be a quiet one. I'll watch Thierry set up the new TV and maybe we'll rent a movie. Saw a cute one the other day - just out in theaters as well, called The Answer Man. As it happens, it was filmed in Philadelphia and includes scenes filmed on 2nd street and at the bookshop down the street. Cute flick.

This is it for a now. Had to try out the new toy. Hard to wax philosophical when you feel like shit.

Friday, July 24, 2009

Frustrating, Fragile, Friday

First thing I want to say is I am okay. I am over it (for the weekend! I just have to explain the day - so don't take what I am saying as too negative. But then what the hey, sometimes you just have to blow off steam.

The day started out great. I had a good night sleep and actually felt pretty energetic when I awoke. I left for my healing touch session with Phyllis and was looking forward to working on healing and directing the chemo to my tumors. Phyllis noted my aura seemed much better since my last visit. As it turned out, my mind wandered over the last several years, when I was diagnosed in 2004 with my second tumor. Decisions were made, I had chemo - no radiation, etc. etc. In the course of the next few years no one every suggested any follow-up in the way of scans, etc. It wasn't until I pushed and pushed that my (then) oncologist suggested a breast MRI and bone scan. I saw the tumor on the CD that was given to me by the techs. My oncologist insisted it was nothing, but again I pushed. I went to my old breast surgeon who had it biopsied, and was told my cancer had recurred.

I stuck with my old breast surgeon and also saw a member from my first oncology group (used in 1991), and did get a second oncologist opinion on treatment. Something in my gut told me I should break out of this system and go somewhere else. It was becoming more apparent that my surgeon was living off his glory (he was a pioneer in BC care in Philadelphia in the '90s). The oncologist from the old group was droopy, matter of fact, and housed in the dreariest offices I have seen shy of the Quest labs! The second oncologist I consulted at Penn was big, tall, loud and offered pretty much the same. Either go for broke and get hit hard with chemo or wait and see, altho he was not willing to test periodically (be pro-active). His theory was, wait until symptoms appear.

When we were in the Bahamas I had severe pain that was coming from the 4th rib, the area near where my cancer was. I saw a doctor in Marsh Harbor (young guy), who suggested I consider flying to the mainland for follow-up. I called both my surgeon and oncologist - who both said, treat the symptoms. If it is anything, it can wait. In all honesty, when it cleared up a week or so later, I really thought it was nothing - that perhaps I pulled a muscle when doing something on the boat. When I came back in April, I did see the surgeon, but again he said it was probably nothing. I accepted that verdict.

NOW - understand, I am not angry about the past, and I am not focusing on the past - this stuff just came up today. We'll talk about lessens learned shortly.

When I learned that the cancer had spread, I was determined to get another opinion, and find a team that works with the latest technology and is up on the latest trials and studies in this area. I quizzed my former oncologist on what trends he was seeing and he basically shrugged his shoulders - and as an aside mentioned one area of study.

Well, I found a new team, a new system with a person who is active in the oncologist community. My first treatment seemed to go well, until I was told I wasn't to come back for 3-weeks. The oncologist told us that I was to go every week for 3 weeks, then have a week off. Apparently the dose I was given was very strong, and couldn't be repeated next week. So, again I am in limbo, waiting to hear just what my treatment will be. (FRUSTRATING)

Yes, I am trying to focus in the moment - and only worry about the things I can change, however, all of these events eventually surface - probably need to surface so they can be finally pushed out. Hence I am feeling rather FRAGILE right now as I try to sort it all out. As an fyi - I do have an appointment at Fox Chase in August.

But, as things go, after my teary call with my sister Jean, I opened an email from my cousin Richard. He reminded me about his wife who lived with much tragedy in her life, yet she never felt sorry for herself. I remember what a lovely, sweet and happy person she was and it made me smile.

So, the point of all this, LESSONS LEARNED (and not the obvious):
  • always question your doctors
  • always go with your gut
  • don't live in the dark and be ignorant about your illness - get on the Internet and learn
  • but then that means face the demon - not always easy!
Today was a difficult day that ended up being a much better day - because of all my helpers out there!

Thursday, July 23, 2009

Thursday, 9:00 p.m.

IBC approved the drug. I found this out when they took me back to prep for the treatment. We arrived at 8:25 and were brought back into the infusion area around 8:45. We were able to get a room along a window wall, with a sliding door and drapery. What a nice feature - allowing total privacy if you want it - and I was able to meditate while being infused.

I met with the oncologist prior to treatment. She immediately commented on what a great team we made. I am sure it helped that the doctor on the IBC panel knew of my doctor and had recently heard her speak during a panel discussion of triple negative breast cancers. She explained all of the drugs I will be taking which are: Bevacizumab (Avastin), Paclitaxel and Carboplatin, and the horrendous potential side effects. In addition, I will receive various drugs to lessen the side effects such as pepcid, dexamethasone which is a steroid and lessens nausea, another antinausea drug which is supposed to maintain its effectiveness for 5 days, and benadryl - which immediately knocked me out! The treatments will be delivered on a 3-week cycle with a 1-week break in between. Avastin will be administered during the lst and 3rd treatment.

The oncologist reviewed the list of supplements that the alt med doctor recommended. She removed several from the list and nixed the wheat grass! I was not saddened by that decision. Some of you may feel this is a mistake, but she was so strongly against certain supplements and herbals because of their potential to adversely impact the effectiveness of the chemo, and had some facts to back up her decisions. When we finished our meeting we shook hands and I felt a surge of energy and hope in that handshake. I think I made the right decision in going with this doctor.

The pre-chemo drugs were started around 11:00 am; the actual infusions didn't start until 1:00ish, we left at 7:30 p.m. Prior to receiving the chemo blood was drawn (through the port, thank god! It looks like someone took a bat to my arm). If certain levels are not maintained, the drugs will not be administered. Each drug has a maximum drip time. For example, a bag of Paclitaxel (which looked like a litre - but not sure) takes 3 hours to administer. The other two drugs were an hour each. Everything is done in sequence. At the end of the treatment they gave me magnesium and calcium - which are supposed to limit neuropathy, a side effect of two of the drugs.

Thierry stayed with me for a while. Lauren visited, we all had lunch then they left and I slept and meditated. The day actually wasn't as bad as I had anticipated. Everyone there is really nice. I had an interesting, funny and talky nurse - who as it happens, just came back to Philadelphia from Maine where he worked and lived for 6 months. He was telling us about his condo that had a view of Bar Harbor on one side, and Mount Desert on the other. Wow!

Other than feeling a bit light-headed and spacey, I feel pretty good. And the chicken soup that we had for dinner was a perfect meal.

As my sister said in her comment, she was also thinking about Thierry today. Having been a care-giver, I understand how hard it is on them. There is no reason he has to sit with me during the entire treatment. I do like to have him walk home with me (which I hope I can continue doing). I do worry about how he is dealing - but I believe he is good (and much better than I) at living day-to-day. I guess that is a trait of sailors - waiting for the right moment, the right weather window, to pick up anchor and sail to your next port. This lifestyle must make it a bit easier to live in the moment. Of course, this is my story - not Thierry's - maybe he'll comment?

I have been thinking about where I should go with this blog - as day-to-day updates on my life will probably not be real interesting for readers, albeit cathartic for me. I'll think about this over the next few days - perhaps post short notes, or make notes each day and publish every couple of days. My other thought is to pick a topic and just dwell on it for a while, like the things that go through your mind when really facing death (or I should say, figuring out how to live); how to make your life meaningful, etc. I'd welcome any thoughts you may have.

I was very fortunate to spend my first chemo day with two of the most important people in my life; laughing with them and the two wonderful, personable and funny nurses who tended me - and they were very attentive. Thank you for all of your thoughts, comments and suggestions, you make every day special - and today was a pretty good day!

Thursday, 7:00 a.m.

My appointment is at 8:30. We'll leave early to go out for breakfast. A good greasy bacon and egg one. The infusion is supposed to take about 4+ hours, so it looks like we'll spend the better part of the day there. I am very apprehensive this morning. Not sure why. Maybe I am dreading the place itself (but at least at this center you have individual little cubes with curtains and a little tv); maybe because of the drugs themselves (altho they say they won't make me sick); maybe it's because they have to work....

It is a gray, foggy morning, how appropriate. The towers of the Ben Franklin Bridge are shrouded in mist. We have such an amazing view. You never get tired of it.

I've packed the ipod, a sweater and will pull together some snacks. Have a book and puzzles from the newspaper. Thierry will be there with me and Lauren will come along later - what a team I have! I'll let you know how it went later.

Today will be a good day - I hope you all have a great one!

Wednesday, July 22, 2009

Wednesday, the night before

Well I did it! I joined the panel review conference call this morning along with my doctor and 3 IBC reps. I was only able to catch one of their names. The noise was awful - it sounded like they were talking to themselves the whole time. I literally decided at the 9th hour (it was 9:00 actually!), to join the call. It wasn't as bad as I thought, nor was it as lively a discussion as I had hoped. My doctor simply stated that I needed this therapy, she talked a little bit about triple negative tumors and referred to some literature she had sent in to them, and that was about it. Only one person in the room asked her a question ("Dr. to Dr." and they knew each other - made sure they got the pleasantries out in the open), and that was it. She left the call after about five minutes to go to another meeting. They asked if I wanted to say anything, which I did - just that I don't know much about the treatments but do know this is a difficult cancer, that the first opinion I received from another doctor recommended the same treatment, that I am doing other alternative therapies to keep my strength and resistance up, and that I hoped they looked favorably on the request. They told me that I would hear the outcome by close of business today. Riiighhhht.... no phone call! So we'll see what surprises await me in the morning. If anyone has good relationships with any senators/congressmen let me know!

I have to say I felt pretty good about participating on the call tho. I was really afraid to do this, even as they were making the introductions - but I did it and suffered very little anxiety.

The alternative med doc gave me another Vit C and B12 infusion today. Thierry and I had lunch at the newly reopened Samson Street Oyster Bar. One of our old favorites for lunch during working days, the restaurant was reopened by the son of the original owner (there was another owner in between who basically ran the place down). It has been completely renovated - very modern with a touch of the old. Food was very good - prices are higher than before, but quality is high as well. Thierry had the biggest cherrystones I've ever seen (ick!).

Tonight we went to the new Center for Architecture on Arch Street. They were promoting the third edition of "Philadelphia Architecture, A Guide to the City" by John Andrew Gallery. There was a very nice reception with wine, cheese, soft pretzels (what else). Inga Saffron, controversial architecture critic for the Philadelphia Inquirer posed questions to the author (who is also the Executive Director of the Preservation Alliance). We were hoping for a raucous discussion, but Inga kept it fairly low-key. The room was packed, we bought the book and it was a nice way to spend a few hours.

We are now relaxing to a Parkening cd, "A Tribute to Segovia". Very nice - if the computer were not on my lap I could go right to sleep. Earlier we listened to an introduction to the BBC Prom Concert Season of 1997 that had short excerpts of music to be performed during that season. Introductions to each work were made by various Brits. You can actually see the concerts via Internet at I understand that the last night of the proms is a riot, with the audience standing, waving flags and singing along to songs like Rule Britannia and Jerusalem! Lots of videos on YouTube if you'd like to check it out.

Another surprise found us when we got home. My neighbor (and friend) Barbara ran across the courtyard with a huge container of chicken soup! She didn't want me to have to think about cooking tomorrow!

A friend told me once never to be afraid to reach out for help. This advice has helped me both professionally and personally - thank you all for helping me stay focused on what's important in my life. You make today and every day very special!

Tuesday, July 21, 2009


We met with the alternative medicine doctor this morning and received a Vit C infusion this afternoon at his office. He added to my list of supplements, and suggested daily doses of wheat grass taken orally, and taken another way every other day! Okay, we've all heard about these types of treatments, and I admit I am somewhat hesitant, and a little skeptical. BUT, there is another side of me that says if it gets to my liver and can provide a little bit of a help to such a hard to reach spot - maybe its worth trying. At least in the initial treatment phase. Anyone have any experience with this??? I mean my liver, which is already compromised, is going to have to deal with the chemo, so I figure I should give it all the help I can.

The Vit C injections I will get twice a week. While there has been some research on the effects of Vit C on cancer, what I have been told by my oncologist(s) is that it won't hurt to have the infusions, and there may be some benefits.

Tomorrow morning (Wednesday) at 9:00 a.m. there will be a phone conference between the insurance company and my oncologist about my treatment. They asked me if I would like to participate. At first I thought I would, but in thinking more about it, I don't really want to hear the arguments against my receiving the drug. Although I know how serious this illness is, I really don't want to hear what the medical world has to say about outcomes. So, I'll leave it in the doctor's hands.

So, for the next four/five weeks, we will spend 4 hours a week at the alt med doc's office and probably 4-6 hours at the oncologist. We're really going to have to work hard at finding play time! AND I intend to play in between.

Lisa gave me a book called "Three Junes" which I just recently finished. A good read, a story about a family and their (inter)relationships. One of the side characters is dying of aids (ok so you say not a good topic - but it was not about that, and not a sad book). The person dying is a music critic and he has an extensive record collection. One evening his friend (main character) walks into his apartment to find the critic listening to his music. The critic decided that he was going to listen to all of the records in his collection. I believe once heard, he was smashing the records. Anyway, I had a thought tonight that Thierry and I should listen to all the cd's in his collection. Now, some of you have seen this collection in our library. He thinks there are about 800+, not counting my meager collection (about 100) and some mp3's he made of his tapes/records, etc. He insisted I do the picking, so I started with the top shelf, first two cd's. The first was Eighteenth-Century Dutch Chamber Music (very pleasant) and the other was the Singing Club by the Hilliard Ensemble - a selection of catches, glees and songs sung by male glee clubs. These songs of the 17th-18th centuries were sung in coffee-houses and taverns - the glee being a partsong for three or more solo voices. One of the songs is the music that Francis Scott Key used for the Star Spangled Banner (I didn't recognize it tho!).

I am not sure where this exercise is going or how long it will continue. There are some hurdles: there are boxed sets, multiple versions of the same compositions, and a lot of opera (not my favorite) including a lot of Wagner (little ick). But I am committed to sitting through it. One of Thierry's first reactions was "we could be listing to Bach for days". At the rate of two cd's a day - it could be more like weeks!

Well, time to end (whew! you say). I received a gift from my sister in the Canaries, via my other sister. It is a tiny statue of St. Agatha, the Patron of Breast Cancer Patients (6th Century). She was born in Sicily to a wealthy family - and lived a life devoted to God. She was beautiful and much sought after - but was devoted to a religious life. She refused the attentions of a judge - and in his anger, had her charged as a Christian. He said he would spare her imprisonment if she gave herself to him. She refused and was sent to a brothel - where she continued to reject advances and customers. She was subsequently imprisoned where she was tortured. Part of her torture was to have her breasts cut off. She died shortly thereafter in an earthquake.

So Jean, thank you for my little saint, thanks to all of you for your good wishes... today was an especially wonderful day!

Monday, July 20, 2009

Monday, Monday

It figures that the week would start out with much to do and aggravation. I know nothing is easy, but pl-ease, cut me a break! Trying to stay focused becomes a real challenge. Not taking out your miserable mood on those wonderful people around you (Thierry) is another challenge - and then of course, the guilt forms a slick syrup over the mess in your plate and it becomes even harder to lift the fork to your mouth.

I spent the better part of the morning (and now the afternoon) on hold with the insurance company, doctor's office and hospital (Fox Chase) scheduling lines. It seems the insurance company won't approve the use of Avastin along with Docetaxell (sp). The Doctor did schedule a treatment without the Avastin for Thursday morning. The Doc's office is still trying to appeal the decision. I have also appealed - for what that is worth. We'll see what happens between now and Thursday - then I'll write to Harrisburg. At this point, just on principal if nothing else.

Thierry pulled all my paperwork together for Fox Chase, now we just have to copy it and Fed-X the lot. Lauren made a call to Sloane and got the info on getting a consult with them. I will have to wait until my first series of treatments is completed before I can consult with Sloane.

Tomorrow I meet with the alternative medicine doctor. Hopefully he'll prescribe some supplements to boost my energy and assist with my liver function. Not even my healing touch session with Phyllis could keep me from feeling whipped after today's phone-a-thon.

At dinner I said to Thierry that I needed to end the day on a good note and was looking for inspiration. I didn't have to look very far: a surprise package from a dear friend, emails from several others, a call from my brother, Lauren and Barbara on the Sloan trail, Thierry at the dinner table (and House on the TV-I got through the MRI's without vomiting blood) all reminded me of how lucky I am. As Elaine said in her email - stay in the moment. So, I'll work on going from day to day, moment by moment one day at a time - and today was a very good day.

Sunday, July 19, 2009

A Sunny Sunday

Today was a perfect summer day. It is hard to believe it is July in Philadelphia. Not an ounce of humidity, low '80's, a light breeze and an incredible sky. Okay does this sound hokey or what! I guess that's what sick people do - they look at the weather and ooh and ahh on good days.

My dear friend Ann sent me a card with an article about an experimental group therapy program aimed at helping cancer patients find meaning in the face of mortality. This program was developed by a psychiatrist at Sloan Kettering, who tested its effectiveness on more than 300 patients since 2000. The program is based on the writings of an Austrian psychiatrist who survived Auschwitz because of his belief that people can endure any suffering if they know their life has meaning. Dr. Breitbart (the developer) stated that "We help cancer patients understand that they are not dead yet (I love this line), and that the months or years remaining can be time of extraordinary growth."

How timely this article was for me. I have had this feeling that I am walking around in a daze, kind of like the walking dead. I am afraid to think too positively, and have actually thought about cleaning out my closets and what items I should give to Lauren, and when! I really don't want Thierry to have to worry about cleaning out my closets - been there, done that! It is such an awful thing to have to do. Is it therapeutic for those you have left behind to sort through your stuff and reminisce? (feel free to give me your opinion on this subject) And then the decisions to make; what to keep, what to get rid of - and who do you give it to. Ugh! I'd much rather do it myself than leave it to someone else. After Doug passed, I thought this was such a chore, and agonized over it.

Anyway, I digress. I think one of the reasons I started this blog was because I began to think what will my legacy be (especially since I haven't even started the family cookbook)? How will I spend my days, being morbid, dull, acting like a zombie? Good grief I would hate to go out that way. So I had been thinking that I needed an attitude adjustment. This article laid out a path: finding ways to continue to do the things you enjoy; focusing on historical sources of meaning (reflecting on your family, when you grew up, etc.); encountering life's limitations; living with cancer. I had hoped to contact the Wellness Center - and will be sure to ask if they have a positive, focused program such as this. I guess the bottom line is - it's okay to look out the window and note what an absolutely beautiful day it is!

About three times a day (morning, mid-day and at bedtime) I take time out to meditate. Currently I am using Andrew Weil's Self Healing with Guided Imagery. If nothing else, it calms me, helps me sleep, and helps me remain positive - and gives me some hope that I can help my body heal. If anyone has any other ideas on guided imagery, I'd love to hear about them.

I also saw Phyllis (Jean's friend) for healing touch. I went on Friday which was a very bad day for me. I had my first melt-down, and was not having much luck with the oncologist's office. I have begun to notice that when I am agitated or tense, it feels like there is a fist in my chest, and I experience discomfort in my side (which I am actually feeling more each day). After my session with Phyllis I truly was much calmer and able to manage through the anxiety. Thierry and I went to dinner and a movie - and had a nice evening. By Saturday I felt pretty normal, and was able to spend a wonderful afternoon with Lauren, and later with Mike and my parents.

The next big hurdle is getting my treatment started. I spoke with a friend today about the Avastin, and she believes I should actively fight the insurance company. So, I have sent a note to my oncologist informing her that I have been advised to write to the state Attorney General, and also asked when we would start on "some" treatment program. I also have contacted Fox Chase to find out what I need to do to get a consult with them. Hopefully tomorrow we will get all the documents together and get them faxed over to FC.

It all takes some thought, some planning, and action, one step at a time, one day at a time... and today was a good day!

Saturday, July 18, 2009

Getting Started

I am not sure what I am doing.... with my life, with this blog, with setting up this blog, but figured I had to move forward, somewhere, and this seemed like a good place to start.

I was just diagnosed with metastatic breast cancer - at age 54 and 7 months. It's in my liver and bone. I'm waiting to start treatment, and every day of waiting is a day of high anxiety. The insurance company has denied access to one of the drugs my oncologist wants to use, Avastin. I may be okay with this after reading about it on line.

How ironic, that I am actually looking forward to chemo therapy. This will be my third go 'round, and my last experience with adriamyacine was intense to say the least. What a nasty drug. So now on to a taxene. I'll lose my hair again and may lose the feeling in my fingers and toes.... but maybe it will extend my life by a few months - if I'm really lucky, a few years (I'm not complaining - I'll take it!).

Problem is my cancer is a triple negative. In breast cancer terms, this is a nasty form of cancer that is not responsive to many of the new drugs that have been very helpful to women with hormone receptive tumors. Maybe there is a clinical trial out there I can plug into - I'd be happy to be a guinea-pig if it would help find a treatment that would work on triple negatives.

So, I thought writing might help me cope. Maybe this way I can leave something behind for my daughter - and I was never able to keep a journal (I have lousy handwriting). Hopefully it will serve as a reminder that every day is a special one, and that I better not waste one minute of it feeling sorry for myself - or being angry.

This is life - this is a day in my life - and today was a very good one!