A Pink Glove Video

A nice upbeat video to help start tonight's festivities.

Its time for the BOUNCE BACK!

Its the eve of New Year's Eve... and I've been in deep contemplation about the new year and the new possibilities it will bring. It dawned on me that every day we receive the same gift... the opportunity for the bounce back.

When I was a kid, there was a popular toy like the one pictured here. It was a Bozo the clown bop bag. A simple toy but it provided an abundance of fun. It also provides for me now, a serious lesson for life and living. Its a simple toy really... a blow up doll with sand in the base. Pretty easy to use too. You hit it, it leans and then it bounces back.

But its the BOUNCE BACK that gives it all the fun -- and for me, gives me all the encouragement that I need to step into my future and the new year. 2010 has been an incredibly difficult year. I have attended a lot of funerals this year. I have incurred a lot of bills because of my health. My credit score has taken some dings because the bills have outweighed the money on many occasions. My love life is the pits and generally speaking... I've been just dragging. But I think that me and Bozo are going to step into the new year because of the beauty of the bounce back.

See, I think of the sand base in the bottom of this toy as the equivalent of my spiritual base. I've had people ask me this year where I was spiritually because they haven't seen me in church for awhile. I have had people ask me where I was spiritually because they had not witnessed me using my tithing envelopes. I've had folks wonder about me because they think that my health concerns may have dimmed my light or my love for God and for living. But my love of God and of this wonderful life He's given me... give me the ability to BOUNCE BACK from my failings and shortcomings.

I had breast cancer. He gave me the bounce back to be cured. I had one breast removed. He gave me the bounce back to get a second one. And so on, and so forth. I have been blessed... blessed beyond measure this year. And while I have taken some hits... it is time for a bounce back. Time for a move forward. I know that God doesn't give me more than I can handle. So, while things may be tough now... I know that good things are coming because that is just the way it is.

As I prepare my mind for the new year and I think of all the new possibilities... I realized that it is time for my bounce back. Some of us look to New Year's eve as our opportunity to bounce back, press reset and start over. But the honest to goodness truth is that every day is that opportunity. Every day that you wake up, you're on the way to your own personal bounce back. Its time to press RESET and get going moving forward.

Time for me to bounce back. Stand back and watch me shine. Breast cancer will not defeat me.

"when they push you down, you've got to get back up"

Onc Visit

Yesterday I went in have my blood work done. Then while waiting to see the Onc, the trials nurse came in and said … oh don’t get up … I want to check your bp first. It was 88/66. Yikes ! that’s way too low.

We then went into the exam room where we went over the 50 odd some questions on what side effects I was experiencing this week. She informed me that my blood work indicates that my liver function had not improved from last week so we’ll just have to wait another week … off chemo of course … and I will enjoy more of my chemo vacation.

A short while later, my Onc came in … he did a quick exam that included listening to my breathing and checking the inside of my mouth with me doing the aw-test. He did a quick feel of my ankles and feet checking for swelling. Then he checked my abdomen, pressing down around my liver looking for any tender spots. There was one small spot but everything else was ok.

He then talked about my low bp saying that I should stop taking Amlodipine immediately and then if I don’t get my bp to where the top number is close to 95 within the next 4 days, I should also drop the Ramipril from 10mg to 5 a day. And of course, we’ll just crank it all back up when I get back on the Brivanib.

Chemo Vacation Continued

Well, I’ve officially been off Brivanib one week and I thought I’d share with you how things are going. I’m feeling less lethargic and wouldn’t have been able to handle all that’s happened on chemo.

Still require tons of sleep but I’m not as chilled in bed or out.  I was in bare feet all day yesterday with no need for a blanket and heating pad. wooohooo!

My appetite is up a bit and it’s not so reactive. I now can eat a greater variety of foods, still in small portions, without having that immediate gurgling in my abdomen. And today was the first day for a regular bm and I can drink fluids without that nausea feeling coming on.

My ankles are slightly less swollen and a friend mentioned that my face wasn’t as puffy. There’s a little more interest in doing a few things now too. And getting up off the chair is less of a chore. Shortness of breath is better tho I still cough way too much.

With all the festivities going on, I sort of forgot to monitor my bp. So this morning I checked it and it’s 96/77 … a little low. So if that happens, my Onc told me to cut one of my bp meds in half.

The only thing that doesn’t seem to be resolving itself is my urine, it's still a dark golden color. I hope to drink even more fluids in the next few days to dilute that back to normal.

Jan. 15th Service Day with City Year!

On January 15th the Civic Engagement Team with City Year Boston will host a volunteer event at the Mattahunt Elementary School.

They are on the hunt for volunteers to help them revitalize a school that has been overlooked due to cuts in the Boston Public School facility budget. On this service day, there will be a baseball themed mural with the school's inspirational motto flowing throughout the space, a stained-glass 'Mattahunt' mural in the gym lobby, as well as organizing and creating a card catalogue for the library.

If you are interested, please to contact Ashley Hackett AHackett11@cityyear.org for information.

Happy Holidays!

Visiting with Friends

Yesterday we visited with long time friends B and D. We ended up being there longer than any one of us expected. I was feeling pretty good the whole time. After a while the men got into their laptops and other toys and us girls just talked and occasionally watched the fish swim around in their huge aquarium.

B and D are such gracious hosts … always an ample supply of snacks and drinks and they even had a blanket already for me to wrap myself up in. They know me too well.

Even tho we got home at a descent time, I still ended up sleeping a solid 12 hours.

A Family Visit

Well, it was another wonderful afternoon and evening spent with family. In the morning, I followed the same regimen as I did yesterday except my usual little nap was cut short because we had to leave. 

So after dinner, we all moved to the more comfortable chairs in the living room. I hogged the whole couch by putting my feet up and then my sister came by with a blanket to cover me up. Thanks sis, I’ll just close my eyes for a bit and listen to what's going on.

I wasn’t listening too well because I fell asleep and woke up an hr half later. I really do like how I can nod off practically anywhere. Then I just joined in the conversation and no one said boo.

Without these naps, I’d just power out and be too tired to enjoy what’s going on.

Visiting with Family

Yesterday D and I went over to my sister’s place for Christmas dinner. My major preoccupation is to do whatever it takes so I don’t have any stomach or bathroom issues. And make sure I’m alert enough to take part in conversation and to be sociable.

I started off yesterday with white bread for breakfast. Then I did my blog and got it ready to auto post at 11:30. Then I had shower, got dressed and organized myself. I did this all early enough to have an hr nap before we left. My sleep it still not up to par and having a good little nap, I’ll have enough energy to make it through the day.

So at my sister’s place, when it came time to sit down and eat, I chose white turkey meat, one meat ball, a small piece of ham and some mashed potatoes. I decided it was best to take two Imodium after just a couple of mouthfuls. I only ate about half of what I put on my plate because, it’s best that I quit eating as soon as I get the slightest feeling of being full. It must have been the right amount because I was able to stay out of the bathroom till this morning. After dinner, I politely said no to any drinks and just sipped on water.

Today is another dinner at my other sisters house … I plan to get ready the same way too.

More Chemo Side Effects Report to Onc

While visiting my Onc this past Thursday, we talked about a few other side effects I was experiencing. My feet are swelling up. He and the trials nurse wanted to have a close look at my feet and I felt bad for them as they pulled my compression socks off and back on. They got a bit of a work out doing that. The Onc then said … oh this isn’t too bad … how are your shoes fitting … I said they’re not. I can only wear my runners now and even they are bruising my ankles. I guess some Boxing Week shopping is in order.

Another thing we talked about was my tender mouth and difficulty swallowing. I was thinking it was due to the fact that I had a stuffy nose, I tended to breathe more through my mouth which seemed to dry everything out. The Onc said that my tender mouth and difficulty swallowing are known side effects of Brivanib. The nurse asked if I had any sores in my mouth and I said no … it was just sensitive to things like toothpaste, pop, certain foods, and hot and cold.

I also mentioned I was hearing strange sounds in my ears but chemo brain here missed what they said about that. I’ll ask again next week.

I’m on Chemo Vacation

Yesterday I had my nine week appointment at the clinic. The appointment usually starts with the clinical trials nurse going over any new side effects I may be experiencing. We barely started when the Onc came in, sat down and asked how I was feeling. I said that two days after starting Eltroxin for my thyroid, I was sleeping better. D noticed it too; he said he felt my sleeping was much more relaxed. We ended that bit of conversation with the nurse asking me exactly when I started taking Eltroxin.

The nurse asked me about nausea and diarrhea … I said I have it pretty well under control but then I’m not eating that much. Looks like my blood work reflected that because the Onc suggested I start taking Imodium first thing in the morning and every four hours after that. The point was I needed to get more nutrition into me.

After the nurse went over her long list of side effect questions, she went over the blood work. One liver function number is especially high, the same number that just about prevented me from getting in the clinical trial. Both the nurse and Onc said this is a known chemo side effect and is expected but it also means you need a small chemo vacation … one or two weeks off of Brivanib for your liver to recover. 

Once again they reassured me that is something to be expected, so don’t worry. She then asked me to hand over all my Brivanib pills. Now I understand why I have to bring them to every appointment.

We scheduled an appointment for next week for more blood work.

I Have a Brivanib Buddy

About a week ago my mets friend K from Calgary sent me an email with a link to a discussion group on BC Mets where a lady posted a comment to the discussion about Brivanib. I was very interested in M’s story and decided to follow her. It’s helpful to know other people’s experiences with this drug and gives me  some piece of mind.

In the discussion group, M said about 8 weeks ago she started a phase 1 clinical trial with Xeloda and Brivanib combo. Her first issue was her bp spiked to 200/100. I had a similar experience with my bp jumping to 170/101. We both had great results on some aspects of our blood work after just three weeks on Brivanib and our tumours or tumour markers have shrunk ~30%. Our Oncs measure our cancer differently.

Where things change up a bit is that she has had to go off Brivanib for five weeks because her Onc was having difficulty getting her bp under control and other aspects her liver function quadrupled. So out of eight weeks, she has actually been taking Brivanib for only three.

Brivanib appears to be a finicky drug and I only hope that my blood work today doesn't show my already high liver function has gone too high and that I can continue chemo. I’ve been checking my bp regularly and it’s ~122 / 75 with the meds I’m on.

M and I now regularly email each other. We’re breaking new ground here and it’s sure nice to have a trials buddy to help go thru this.

Checklist for Clinical Trial Nurse

Today I made my list of aches and pains for the trials nurse when I see her on Thursday and I thought I’d share it with you. I’m going to say that my coughing continues … better at times and worse at others.  I did have a bad cough before I started Brivanib; funny thing tho, that it got better, much better in fact for a few weeks and now it’s back to where it started.

When you’re on chemo, some of these symptoms creep up on you ever so slowly that you don’t really know when they started but that is always a question the nurse asks … when did this or that start? Well aprox Dec 10, I developed a tender mouth and a sensitivity to hot and cold. There is tenderness around my teeth as well. Some foods are more irritating to eat and if I bit my tongue, for sure it takes longer to heal.

Food doesn’t go down smoothly anymore either and my throat feels restrictive. My nose has been stuffy since before I started Brivanib and it really stuffs up now during the night. So now I breathe through my mouth which tends to dry the whole works out.

Sometimes when I’m lying down, I hear odd sounds in my left ear … one being something like camera shutter. Another being a big over head door slamming shut. I will mention that I was sick for the very first time since starting Brivanib. Also my feet and ankles continue to swell, so much so that since Dec 15,  there's a  skin wrinkle where my shin and ankle meet.

Cancer Research Saves Lives Video

Here is a five minute video put out by American Association for Cancer Research. It’s a fascinating video about the accomplishments by all cancer researchers so far.

The mission of the AACR is to prevent and cure cancer. Founded in 1907, AACR is the world's oldest and largest professional organization dedicated to advancing cancer research.

Just a note of caution, you may want to turn down your speakers or even shut the volume off as the music is quite loud and repetitive and there is no speaking.

Mother 86 Years Young

Yesterday I went through my normal morning routine, except I would not be having my early afternoon nap. It’s my mother’s 86th birthday and twelve of the family got together for lunch at a local restaurant to celebrate. As we all gathered around, I thought what a wonderful family I have. Everyone was so full of life … chatting with each other, catching up on all the news. My nieces and nephews are all couples now and have grown into fine young adults, with careers and talking about their great plans for the future. Mother just sat there glowing as she looked around the table surrounded by her children and her grandchildren … she was just so proud.

Because food is such an issue for me, I decided to look up the menu on the web the night before … thinking if there would possibly be anything I could order. In the end, D and I shared a burger and fries because that was what was popular at our end of the table. I had two bites of his burger and about four fries and it sat well with me. My thoughts now are that I can probably eat most anything as long as the portions are very very small. I even had one bite of cake to help celebrate the occasion. And everything came out ok … in the end … this morning.

As soon as we got home, I hit the sack for a nice long nap.

A Rude Start Day

Yesterday morning I woke up feeling a little off… can’t really describe it but I was off. I got up and took my Brivanib pills with a glass of water. I then laid down for about an hour and got up and took three bp pills and sat at the kitchen table. D was making coffee at the time. A couple minutes later I said to D, wow those made me feel nauseous today. About a minute later I said get me a plastic bowl. How big of bowl would you like? NOW I said. I went from feeling fine to vomiting in no time flat.

I wanted a bowl to see which of the pills would come out so that I could replace them. I didn’t think there was time for any of them to dissolve but who knows. There was one bp pill that was still intact which I replaced when I took with my thyroid pill a half hour later. I’ll gotta tell ya, it felt so good to get that all over with so quickly. This is the first time I’ve been chemo sick since 2000 when I was on FEC.

On the bright side, my last three bm’s have been near normal. whoo hoo !! I’m still very careful of what I eat tho; no dairy and keep the portions small. I just nibble and give my stomach time to see how it likes it.

Prescribed a Thyroid Medication

On Monday I mentioned I was struggling with my sleep. I said, I’d wake up breathing real hard ... trying to get some air in me. D described it as I start breathing shallow then I take a whole bunch of deep breaths to recover. So that morning I emailed the trials nurse to see if they could prescribe something for me to give me some relief. Between days off and telephone tag, it wasn’t till late yesterday I picked up my prescription for Eltroxin (levothyroxine) … a thyroid medication. I was not expecting a thyroid medication.

According to WebMD, Eltroxin is used to treat an underactive thyroid (hypothyroidism). It replaces or provides more thyroid hormone, which is normally produced by the thyroid gland. Symptoms of low thyroid hormone levels include tiredness, muscle aches, constipation, dry skin, weight gain, slow heartbeat, or sensitivity to cold.

I’d have to say I have many of  those symptoms … especially the fatigue and feeling cold all the time. If this little pill could get rid of the chills and give me some more energy, I’d be thrilled.

I see the Onc Thursday so I’ll find out more then.

Huge Bouquet of Flowers for Christmas

Last Wednesday about supper time, the door bell rang. D went to see who it was … turns out it’s a delivery, I was getting flowers … a huge boutique of flowers. Not only was it huge but the whole thing was heavy too.

After putting the bouquet on the dining room table, we carefully unwrapped it from the many layers of plastic used to keep it warm as it’s carried from the heated van to the house.

Oh my … it’s a Christmas flower arrangement with fresh greens including cedars and pine bows, filled with Holly, red roses, red decorative Christmas balls and whole bunch of flowers I’m not that familiar with. And when I came back into the room with some water, I noticed that the scent from it all had filled the room, perfect for the season.

It turns out they’re from my sister in the USA. Sis, thank you so much for the lovely flowers, they look gorgeous. We set the bouquet up in the living room right in front of the fireplace. They not only lightened and brightened the room, but my spirits too. You have always been so supportive and kind.

BC Christmas Party

Yesterday we had our Sears BC Coffee Group Christmas Party. Our original plan was to have a Christmas party in J’s hospice room on December 15th as that seemed to work best for everyone … but time was against us and J passed away on December 7th. We were all kinda thinking that we’d just forgo this year’s party but T, J’s daughter said these parties were very important to J and that she wanted us to continue with them way after she was gone. In fact she had already purchased Christmas gifts for the gift exchange back in September. So at the last minute, Irm offered up her home to have the party.

T joined us and it was so fitting to have her there to hand out J’s Christmas gifts. We shared stories and shed a few tears and looked at pics of happier times as we talked about J. After munching on some finger food, we waited anxiously to see what this year’s dessert would be. Irm is an amazing dessert maker and she wowed us once again … trays and trays of German Christmas baking. Oh my! it was amazing. I had to limit my munching because my stomach but I’m sure the other gals ooo’s and aaaah’s could be heard down the block.

After a while we moved over to the living room and sat on the comfy soft sofa and chairs with our coffees. Gradually eyeballs glanced over to the tree in the corner and we decided it was time to open the gifts. Then the cackling and laughing really got going. Time to enjoy the moment, it was so festive.

Greedy girl...

It is the Christmas season and good food is everywhere you turn. Everywhere! And for a greedy girl like myself, I think of food even when I'm not around it. The temptation to overindulge is always right in the next thought that I have. The holidays just means more opportunities to indulge and enjoy all sorts of decadent goodness.

Sigh. Sometimes I wish I could just eat and eat and eat... and not worry about calories, or cholesterol, or fat intake, or sugars... well, you get my drift right? The beauty (if you can call it that) of going through chemotherapy was the free pass that my oncologist gave me to eat anything I wanted whenever I wanted. I mean, come on, telling a greedy chick that she's got a free pass to consume as much as possible... is about as wonderful as it can be.

But, sadly, those days are gone and I have to get it together. So, you know that I'm miserable right now trying to rein in my outlandish eating habits, right? Ugh. Its the pits. I over-ate at Thanksgiving. Told myself that I would pull it together after the holiday was over. Yeah right. Nothing of the sort ever happened. Instead, I started making excuses to keep eating and eating and eating. Its tragic I tell ya. TRAGIC!!

My birthday is only a few months away and I refuse to go back to the beach chunky like I did the past two years. Re-Fuse. I can't blame my cancer treatment for my puffiness like I have for the past two years. I can blame a little bit of my chunkiness on my tamoxifen... but if I watched what I ate and put a little bit more exercise in my days... that would help.

(gas face)  But of course, I don't want to do that. I want to bake cookies and pies and cakes... and taste all sorts of decadent drinks and snacks. I wake up thinking about food I can eat, I watch the Food Network and get ideas for hors doevres for parties I'm not even throwing... its a sickness I swear. (laughs) But...then I remember how little I could eat just 2 years ago and I just try to remember that moderation is the key to everything.

Its so cold here right now... but it can't keep a good looking chick down. I hate running. I mean, I loathe it with every piece of me. However, running is the best exercise (for me) to drop pounds and tone up. So, cold weather or not... this chica is hitting the pavement, literally. The plan is to drop some lb's before the spring thaw. But... if you catch me out and about and I'm stuffing my face (highly likely)... just give me a look that says...

"you know you need to run a couple of miles after eating all that, right?"

Just don't try to take my food away from me... I might chew your arm off as you reach for my plate. :)

First Mets Coffee Group

On Monday afternoon, a handful of our mets group gals got together for coffee. Our support group had officially ended last week and we decided to meet casually. There were four of us, which is about half of the group were there … which is still good. As we settled in with our coffee and tea, the conversation soon shifted to cancer.

We talked a bit about whether we were in denial or not, something we didn’t talk about at the clinic. We all agreed that’s a tough one to figure out. One gal said, I don’t know if I’m in denial or not. I still feel so good but when my Onc stands right in front of me and says that I have 6 to 18 months to live … 18 months if you take treatment and 6 if you don’t, that’s really hard to wrap your head around. And then another gal says, I’ve been thinking that this is my last Christmas for 11 years now. Wow .. how different things can be.

We then talked about how bad we felt about leaving our jobs so abruptly, leaving those behind to figure out who is going to do your work. I know I left my job the same day I found out how bad my cancer was.

We ended up talking about our plans for the holidays and that sometime in the New Year we’ll email around to meet again.

...aaahhhh... its Christmas time again!

I seem to be measuring time by how many so-and-so's I've experienced since my diagnosis. This is the third Christmas since I was diagnosed with breast cancer. The first Christmas was just a few months after my diagnosis... at the end of my chemotherapy (and the beginning of the end of my relationship). I really can't remember right now how I felt about Christmas in 2008. I'm sure I was sad and feeling pitiful... but unless I go back in the blog (or my journal) to read what I wrote about that time, there's just nothing to draw from in my mind.

2009 was a little different though. I was a year into my treatment -- the end was becoming visible. I had just had my reconstruction surgery the month before and I was looking less like a cancer patient and more like a real girl. (laughs) I can remember being so excited to be alive and able to eat and taste food... those little things that I took for granted before breast cancer. Christmas was nice... a break from being sick.

This year, 2010... I don't know what I'm feeling. I'm all over the place. One day, I'm giddy and feeling special. The next day, I'm somber and wondering why it isn't over already. (shrug) Its weird and bizarre. I am still transitioning to life after breast cancer. I still feel fragile even though I know that I'm not hardly frail anymore. I am frustrated with the progress to find a new job and I am truly longing for warm sunny skies and ocean waves lapping at my toes... I can't wait for spring to hurry up this way again.

One thing is for sure... I am here and I am happy and thrilled about that. Life isn't perfect for me, but it is joyous and filled with opportunities to spend time with people I love and have some giggles.

How are you spending your Christmas season?

The difficulty with being so honest and candid

I think that I finally understand why so many cancer survivors put on the happy face and write those perky books that make it seem like cancer is just a little blip that you go through. They do it for the people who know them and love them, but mostly they do it for themselves. It is a real challenge trying to balance being honest and candid about the emotional toll and the physical changes that breast cancer treatment puts you through without unnecessarily upsetting the people who love you.

I am finding that when I encounter people I know who may not have seen me in awhile but who follow the blog... they tend to be surprised that I am fine and looking pretty good. Which always surprises me that they are so surprised. But when I think about what they probably have read on the blog, I realize that I don't often post the happy stuff... just the sad or emotional issues.

Well, my life is just like anyone else's... it has its ups and downs. I'm generally quite happy and feeling good about things. I laugh and giggle as much as possible. And I try to make others laugh and giggle too. What is life without laughter? Far more serious than it needs to be.

We're all aware that time is precious. That no day is promised to us. And that every moment we've been given is a gift that we should cherish and be grateful for. Indeed, indeed... life is good. Really good when you sit back and think of all the ways it could be different.

So... take a moment to count your blessings and find ways to be a blessing to someone else. It will make you smile all the way down to your toes, I promise you.

Physiotherapist - 6 month checkup

The clinic likes to keep tabs on my lymphedema arm and yesterday I had my physiotherapist appointment. I’ve been so fortunate not to have anything major go wrong so I only need to go twice a year. She measured up both arms to compare the two in size. My right arm has the edema and it’s only 4.5% larger than my left. Seeing how that is my dominate arm, she said that’s pretty good.

I was a bit surprised that it hadn’t really changed from my visit in June because I’ve started a new chemo since then and the edema is puffing up my ankles. I assumed my arm would follow but I guess not … yea. No change in the size of my glove or sleeve.

When I mentioned to the physiotherapist that my ankles were puffing up … she said you know what you need? And I said … some diabetic socks? No, you need some airplane knee highs. They are light compression knee highs that people like to wear when flying. I said guess what? I have a pair of those leftover from my trip last summer. 

Later on I was thinking, why didn’t I ask her the difference between the $7 flight socks and the $27 ones.

Lousy Sleep Last Nite

I went to sleep last nite feeling pretty good but it didn’t last. I started waking up numerous times throughout the night. I’d wake up breathing real hard ... trying to get some air in me. D described it as I start breathing shallow then I take a whole bunch of deep breaths to recover. He says I moan a little in there too.

This waking up during the nite is becoming more and more of a problem starting last week. I'm thinking it’s when I'm in a deep sleep at night. I usually have an afternoon nap and waking up doesn't seem to be a problem. I feel well rested then too. During the day, I do have occasional shortness of breath and I am easily winded if I do something a little strenuous.

I feel a little panicky when I can't get enough air. First thing this morning, I sent an email to my trials nurse letting her know what’s going on.

I’m Starting to Swell Up

Brivanib is causing edema or swelling my feet, ankles, legs and face and must be obvious because a couple different people have mentioned my face is rounding out. Sometimes you’ll hear cancer folks refer to this as having a moon face. My ankles are now puffed out to where I need head over to the drug store and buy diabetic socks. My regular socks are now getting too tight.

This is not my first go-round with edema. Back in 2009 when I was on Taxotere, I got pretty swollen in my ankles and legs as well as my face. I also collected fluid around my lungs and in my abdomen.

To me, fluid in the abdomen is no biggy … I just need larger clothes but fluid around the lungs is way different. At times I was really short on breath and that scared me. I was breathing shallow at nite and sometimes I stopped breathing for a few seconds. Fluid around the lungs caused me to cough a lot too.

It’s only been seven weeks since I started Brivanib and I just don’t know how much fluid this chemo is gonna build. D says that I’m starting to breathe shallow at nite and that has me concerned.

Knitting Group is Done for the Year

Yesterday I went to the last knitting support group meeting of the year. I joined in January and then it shut down for July and August. Not only was this was the last meeting of the year, it’s possibly the last for a long time as the facilitators decided after ten years of volunteering with the clinic, they needed a break. It was a bit sad to think we might not see each other again; some of us have really grown close.

I enjoyed the company of group because the conversations always tended to be on a lighter side with no shortage of outright laughter. F mentioned we should collect email addresses and phone numbers so we could keep in touch. Excellent idea … around went a piece of paper to collect the info and then we made photocopies.

After the meeting, all 10 of us went over to a restaurant in the mall and had a bite to eat. I ordered dry white toast and tea, which seems to be the safest choice for me these days. We continued to chat up a storm, make jokes and one-liners.

It was now approaching three hours out and it was all catching up with me. I had started feeling a little weak after the two hour meeting and now I was really feeling weak and bit nauseous too. It was definitely time for me to head home.

Dr Marla Shapiro talks about her BC

Marla Shapiro is a Canadian physician who at the age of 48 was diagnosed with invasive breast cancer. She is also a writer and on-air health journalist.

Here is a nine minute video of Marla talking about her cancer. Included is the transition from the roll of a physician to one of a patient, the decisions made leading to her double mastectomy and the uncertainty of the disease. Near the end of the video she offers advice on dealing with cancer.

Fatigue is starting to set in

Well, fatigue is starting to set in and it’s getting to me. I feel so heavy and slow. I would rather just sit in my chair and do nothing except watch TV and surf .… not even go out for coffee, now that’s something.

Yesterday, D convinced me to go with him and get some groceries. I so did not want to move, especially out in the cold but I mustered up all my energy and off we went. We did the first few aisles together when I said I’m gonna sit in the pharmacy, get me when you’re done. A short time later, he came by and together we did the blood pressure thing in the little chair and hey, I was normal. My BP meds are working. Then I headed straight for the car.

I have this stack of papers on the dining room table waiting for my attention … it has been sitting for weeks now. And they’re all simple things like making a phone call or filling out some forms. But I’m just not interested. I've even decided not to do Christmas cards this year. Of course, housework isn’t even on the radar. D does the laundry, rugs and dusts and together we do the sink and keep the dishwasher going. Most everything else is left to take care of itself.

I remember being this fatigued on Taxotere and then some, so this isn’t new. I’ll be wearing out the furniture before you know it.

A BC Friend has passed

It is with deep regret to tell you that my dear friend J from our Sears BC Coffee Group lost her battle with metastatic breast cancer yesterday. She died peacefully in hospice with family at her side.

I first got to know J when we met in Sep 2000 at the Cross Cancer Institute here in Edmonton. Our group started out with seven ladies and sadly we are now down to five. We had this common bond of friendship and support found with each other’s company. We all started meeting once every two weeks for coffee at the dept store cafeteria.

J was always the gracious lady who opened her home to host our annual Christmas party and summer garden party. She was very creative and always carried herself with grace and poise. J you will be sadly missed. My heart goes out to her family.

Rest in peace my friend.

~ Blue was her favorite color.

Volunteers needed for next week's Marathon Sports Jingle Bell Run!

7-8 volunteers are needed for each of the five

Marathon Sports Jingle Bell Run next week.

Check out their Facebook Page.

Contact Pauline: BAEvents (at) aol.com

Time	Sunday, December 19 · 11:00am - 1:00pm
Location	Davis Square Somerville, MA
Created By	BA Event Promotions
More Info	Includes: 5Km Run & Walk Finisher Medal - bottle opener w/ribbon Cool Colorful Short Sleeve Tee Shirt Festive Somerville Post Race Party with our Participating Sponsors And More! See http://www.baevents.com/jinglebell/ for details.

RIP Elizabeth Edwards - another pink ribbon sister

Elizabeth Edwards, former wife of John Edwards (presidential candidate) passed away on December 7th. Her family had just released a statement about her failing health a few days before and she shared a very kind and graceful comment with the world. Her medical team shared that there was nothing further (at that time) that they could do for her and she passed away a couple of days later.

I, like everyone else, watched this lady's life from a distance. Absorbing what was fed to me by the media machine and just pondering how she managed to get through what appeared to be tragedy after tragedy with grace and polish. I recall a conversation years ago with a work colleague in which she was referred to as a "steel magnolia". That term is used to describe a southern woman who is generally regarded as tough and independent, but still quite ladylike. I've always sort of liked that term -- and I think that it is one of the highest compliments that you can receive.

Elizabeth Edwards was a steel magnolia to me. She endured losses and set-backs that would send others to their knees... but she managed to stand tall and keep her head up through it all. The death of her child, breast cancer diagnosis, learning that her husband cheated on her and fathered a child outside of their marriage... and then the recurrence of her cancer with little possibility of curing it... that is a lot of storms for one person to withstand. But she did.

Politics aside, it takes a lot of strength and a strong resiliency to say to the winds blowing through your life... "I'm not going anywhere". To be able to bend like a willow tree and yet not break is to me the ultimate in strength. I hope that I reflect that same steel magnolia strength and reserve to people as I struggle to deal with the aftermath of breast cancer.

Cancer can wreck relationships. I've heard a lot of stories about marriages that disintegrated after the the diagnosis of cancer. There are some marriages that are strengthened by the fight to be sure. But many simply are too fractured and/or weakened by other storms of life to endure one last hurricane. I appreciated that after learning that her husband had fathered a child with his mistress Elizabeth decided that she'd had enough. I liked that about her. I don't know whether I would have done the same thing in her position. Facing the end of my life, I'm not sure that I would have the strength to stand alone. But she chose to live life on her terms even until the end. That's admirable.

In her passing, I hope that her friends and family (and her ex-husband) accept that her disease was not the totality of who she was, and how she impacted the world. Her disease was merely the catalyst that allowed millions of others in the world to see her strength and be inspired by it.

I know I have been inspired. Life is as good as we allow it to be, no matter how many days we have. Or have left.

"Resilience is accepting your new reality, even if it's less good than the one you had before," she said. "You can fight it, you can do nothing but scream about what you've lost, or you can accept that and try to put together something that's good."

Did Puffy stiff the breast cancer community in NY?

So, a story is emerging from New York and its not looking good for a certain music mogul. Sean "Puffy/Puff Daddy/P. Diddy" Combs was hired to host a pink party on Long Island, NY back in October. Only problem is that its now December and the two organizations that were supposed to receive money/donations from the event have yet to see a penny.

Sigh.

I tell you, going pink is BIG BUSINESS people. Really big business. And just because some promoter or marketing team tells you that if you spend your money on this or that "pink" product or service... it does NOT mean that any of that money will actually end up helping a breast cancer survivor in any way.

Sean Combs allegedly was paid $80,000 to appear at this event. And while he's correct (most likely) that he had nothing to do with whatever the promoter promised the two breast cancer organizations... the fact that he's a multi-millionaire (he's allegedly worth about $380 million dollars)... I think its sort of bad taste and rather sad that he hasn't offered either group any money at all.

The groups are at fault as well as the promoter(s) and the club owners because there wasn't a written contract. So, with no contract, who knows what was really agreed to and where the miscommunication happened. But its sad when you think about it because someone's greed is going to impact another person's life in a major way.

The next time someone asks you to pink it up for the cure... ask some pointed questions about where the money you spend will actually be going. Because this sort of situation goes on all the time... this is only making news because Sean Combs is involved. You have to be careful where you spend your money.

He's 'P. Diddly squat'

By BRAD HAMILTON

Call him P. Deadbeat.

That's how two breast-cancer charities regard hip-hop mogul P. Diddy, claiming they were stiffed by a "Pink Party" he hosted on Long Island last month that was supposed to raise money for their organizations.

While the host waltzed off with a five-figure fee from the Glo nightclub in Westbury on Oct. 14, "We never got a penny," said Carolyn Spector, director of the Long Island Plastic Surgical Group Foundation, which does breast-reconstruction and other operations for underprivileged patients.

"Nothing was written down, but we were told we would get part of the take," she said. "The terminology was 'proceeds from the event.' "

A staffer for the other charity, 1 in 9: The Long Island Breast Cancer Action Coalition, said, "It's just a little embarrassing. People say, 'How much did you raise for your programs?' And we say, 'We haven't seen anything yet.' "

There was plenty of money coming in that night, the organizations allege, saying guests were charged $10 at the door and $1,000 to sit with Diddy in a VIP area of Glo, a swanky club that holds more than 2,000.

"By 1 a.m., the place was packed," said Spector.

The event, touted by the nightclub as a charitable takeoff of P. Diddy's fabled "White Party" in the Hamptons, asked that guests wear a "splash of pink" in honor of October being the month of breast-cancer awareness.
But Diddy, who promotes himself as a staunch advocate of breast-cancer causes, created a flap when he showed up not wearing any or even realizing he was expected to.

But he did walk off with a "consider able amount of money" for playing host, according to a spokesper son for Glo, which came up with the idea for the party.

Diddy declined to say how much he pocketed. The charities said they were told it was $80,000.

The mogul -- whose reported net worth is $380 million, and who Forbes estimated earned $30 million last year -- said he did nothing wrong and doesn't owe the charities a thing.

"I didn't know what the [club] owner promised -- that had nothing to do with me," he told The Post.

"I had no information about the charity. When the event was booked, it was just for an appearance. I agreed to let him add the charity because I thought it was a good idea."

John Smythe, whose father, John Sr., owns Glo, said the club offered Spector and Geri Barish, the director of 1 in 9, a table where they could ask for handouts. The two then ordered drinks and wandered off, he claimed.

"They were working a table for donations," he said. "But they left the table later and start drinking. Seemed like they were into partying."

"That's just a bunch of crapola," Spector shot back. She said the charities were given a verbal promise of a portion of revenue from the bar or door.

"There was never any question of my setting up a table and trying to fund-raise on my own. That's not the way we operate. There weren't even chairs for us to sit down on. And I didn't have anything to drink."

A Glo spokeswoman then called the paper with a different story.

"It was agreed that if there was a profit, a portion of it would be given to the charity," said flack Danielle Orsino. "But the night of the event, there was a torrential rainstorm. They expected thousands and only a few hundred showed up. So they lost money."

Additional reporting by Ginger Otis
brad.hamilton@nypost.com

Coping Strategies for the Holiday Season

Yesterday we had our sixth and final mets support group meeting for this year. We talked about wanting to start a group in mid January. I think we had eight ladies that were consistently attending the weekly meetings, so it might happen.

As we talked about our Christmas plans, some of the ladies felt sad they couldn’t do what they once could and even felt overwhelmed with the thought of spending so much time and energy with family and friends. Then we talked about some coping strategies to make it through the holidays.

It’s probably best to pace ourselves and not worry about being to extravagant with things, simplicity will be best. And if we’re not up to it, have others prepare the Christmas dinner this year or at a minimum accept help from others in preparing the meal. The important thing was not to expect too much from ourselves.

Fatigue is a huge side effect of cancer treatment and there is nothing better than closing your eyes for a short time to rejuvenate ourselves and our outlook. Being well rested can makes a world of difference, so if you’re going out to someone else’s place, plan for a nap before you go or even while you’re there. And if all else fails, plan to leave early.

In the end, we agreed Christmas can be an exhausting time so it’s important to pace ourselves. It was nice to know that some ladies felt well enough to prepare the turkey dinner. And for those who aren’t, they already have plans go to a relative’s house.

On Cloud Nine

I’m still floating on cloud nine from the super good scan results. It was especially nice to share it with family and friends after so many months of not so good news. It was about 16 months ago since I’ve had shrinkage of my tumors … the only news I’ve had to share since then has been about stability or growth.

After the Onc left the room at my Thursday appointment, I asked the clinical trials nurse … I remember reading in the handout info you gave me before I signed up for the trial that after 12 weeks things change up a bit … what happens? She said … if your cancer gets considerably better or remains stable while on Brivanib, you will continue Brivanib treatments. If the cancer gets considerably worse on or before the 12 week visit, you will not continue in the study and Brivanib treatments will stop.

Of course, the nurse said I am nowhere near stable right now. Stability is where you get to a predetermined tumor size and stay within a certain percentage of that size. If you are considered stable, the participants in the trial become randomized with a placebo.

But, if I continue to improve, I will continue taking the trial drug … and that’s assuming my body is handling the side effects well.

And lastly, if the drug stops working and the tumors grow over a certain level, you are off the study, she said. She tried to draw out the various scenarios for me but this foggy brain of mine just didn’t quite get it all, so I said to her, I’ll just worry about taking my four pills a day and you guys worry about when I’m considered stable or improving and all that other stuff.

Its three weeks till my next blood draw and six weeks till my next scan. I am just going to blissfully float along until then.

Festival of Trees

After Thursday’s great scan results, D and I thought we’d celebrate by going to the annual Christmas Festival of Trees, for charity and all indoors at the Conference Center. For sale were hundreds of beautifully decorated trees along with 50 gingerbread houses all designed, built and donated by local businesses. All were very elaborate and beautiful. There was even a separate area for one-a-kind ornaments for both under and on the tree and mantel. At the end of it all, everyone voted their choice for the best gingerbread house.

After we walked about half way thru, D went for a couple of coffees and we sat in front of the stage where school children sang and played Christmas music. Those young sweet voices add so much to the magic of what was going on.

Since its inception in 1985, the Festival of Trees has risen over $12M, all donated to the University of Alberta Hospital and the Mazankowski Alberta Heart Institute.

Below are some pics we took ...

BC Video

This ad was created for NBCC in Australia. It's kind of cute, 45 seconds.

2011 Run of the Charles Canoe and Kayak Race

Every year about 1,500 people compete in the 2011 Run of the Charles Canoe and Kayak Race and anywhere from 5,000 to 10,000 spectators come to watch and enjoy the activities at the finish line festival. Admission is free for all spectators and it is a family-friendly event. All proceeds benefit the Charles River Watershed Association and their efforts to keep the Charles River clean and safe for all.

WHAT: The 29th anniversary of the Run of the Charles Canoe & Kayak

WHEN: Saturday, April 30, 2011 First race check-in at 8:30 AM. Races continuing all daylong. Concluding at approximately 4:30 PM at DCR’s Artesani Park.

WHERE: On the Charles River, with races starting in Dedham, Needham, Newton, and Allston. All races finish at DCR’s Artesani Park on Soldiers Field Road in Brighton where race fans and families gather to enjoy the free Finish Line Festival.

WHO: 1,500 canoe and kayak enthusiasts, professional, amateur, and recreational, from throughout the US and Canada, ages 12 and up, compete in a variety of races, including the$5,000 Professional Flat water Canoe Marathon, the 24-Mile Relay Race, and 19-, 9-, and 6-mile races. 5,000 – 10,000 spectators line the riverbanks to watch the Run of the Charles.

FEATURING: Corporate and college team challenges Family fun at the Finish Line Festival –highlighted this year with participants and spectators getting the opportunity to make history by setting the Guinness World Record for “Most People Throwing Rubber Chickens at the Same Time”

ADMISSION: FREE admission to the Finish Line Festival at DCR’s Artesani Park. Race entry fees range from $35- $55 per individual to $350 - $400 per relay race team.

Questions, entries and volunteer information contact: rotc@crwa.org http://www.charlesriver.org/

My CT Results Are In

The receptionist called out my name and I was ushered into the examining room. As I’m sitting there, I’m still thinking of how I was going to apologize about not fasting for the CT scan last week. Then it occurred to me … wow this is my first CT scan since the start of my new chemo six weeks ago. What’s it gonna to show?

Well my Onc and the trials nurse came in together which is always a bit overwhelming. Onc sat down in a chair beside me, leaned over and showed me the radiologist’s report that compares today’s scan to the October 15th scan. My eyes darted down to the two tumor sizes they use to monitor my liver. … 3.6 x 2.5 cm and 3.0 x 2.2 cm. Together they shrunk 33.7 %. I could hardly believe it; when I looked up, both the Onc and the nurse were just smiling at me. What a surprise for me!!! What a surprise!!!

The Onc said these results are very good indeed and that your total liver volume has shrunk by 5% but added that is still quite swollen. He also said that the tumor makeup has changed from a hard lesion to a softer lesion and that it’s more watery like. Another surprise!!!

Pretty well anything said after that was muffled in my brain: I couldn’t process what was coming in fast enough. It felt like I was floating off my chair… like having an out of body experience. Were they really talking to me or was I dreaming?

With the radiologist report in hand, I headed home. I wondered what the tumor size back when I first started this whole deal in August of 2008. My blog notes that the largest tumor was 4.0 x 4.0 cm. So thru the four chemo’s that I’ve been on since then, my tumor size has yo-yo’d a lot.

Still not believing the news, I checked to make sure that it was my name on the report.

CT Scan Redo

Yesterday I redid a CT scan that I had done last week and this time I didn’t forget to fast. As I was going through the motions, I couldn’t believe I was back again, removing my clothing and changing into that breezy hospital gown. I thought, it is cold everywhere and sure would have been happier snuggling in bed instead of going through this again.

My name was called … time for the IV. The nurse found a good vein on the second attempt … I was so happy with only two sticks. She then mixed my 2 liter cocktail asking if I wanted her to use cold or lukewarm water, lukewarm I said. Then she asked if I wanted flavoring, I said yes, I’ll take iced tea. Great ... then she sat me at a table in the waiting room with my two drinks; I quickly got up and got a heated blanket to wrap around myself. Drinking all that fluid and waiting the required 45 minutes sure does make me feel cold.

I ended up sitting by a sweet older lady who was having her first CT scan ever. She said she made the mistake of ordering a cold drink because she thought it would be more like a glass of water not the two liters they gave her. She was shivering like a leaf. I said there were warm blankets but she said my fur coat should warm me up. I said you can ask for a warm blanket when you lay down for your scan. After her scan she came out with two warm blankets and still shivering. She sat down in the waiting room for about ten minutes until she warmed up enough to go and change back into her street clothes.

Anyways, after my scan was done, I headed home to bed and wrapped myself in a couple cozy blankets and an electric heating pad at my feet.

I get the results of my scan later today.

Noreen Fraser Talking Stage 4 B C

As per Wiki ...

Noreen Fraser was diagnosed with breast cancer in 2001.By 2003, her cancer had metastasized to her bones. After years of fighting, Noreen pledged to devote herself to raising money for focused research to find new techniques to prevent and fight cancer.

She started the Noreen Fraser Foundation in 2006 and recruited other survivors and prominent figures in the medical, entertainment, and business industries to join the organization.

Prior to starting the Noreen Fraser Foundation, Noreen produced other award winning television shows including, Entertainment Tonight, ABC's Home Show, and The Richard Simmons Show. Recently, Noreen has started working on producing a documentary about cancer’s effects and developing a television project that will serve to raise awareness for women’s cancers.

Here is a five minute video of Noreen Fraser talking about her cancer and The Power of Comedy fundraiser in LA this Saturday, December 4th.

Its Alright...



(Ledisi)

During my days of chemotherapy, mastectomy surgery and recuperation and radiation treatment... I often reached for things that would make me feel better and keep me grounded in the faith that everything would be okay. I can tell you know that I was terrified almost every day that I dealt with my cancer treatment. I learned to laugh around the pain, and I also learned to give the pain room and to let it go. I spent a lot of time alone in my bedroom just crying and praying and hoping that it would all be alright. And it was. It is alright. I tried to be honest about my fears and emotions about having cancer without being too morose about it.

Through those days, weeks and months (well actually years)... there was one song in particular that just spoke to my spirit and soothed my soul. I listened to it just about every day and I sang it to myself while I sat in the hospital at chemo or radiation. The song is "Alright" by Ledisi. I'm not sure if you're familiar with the song... but it is awesome. (smile)

I had not listened to the song in a little while until today when someone posted an acoustic version on facebook. As soon as she started singing... my heart opened up and the tears started to fall. I am so grateful for artists like Ledisi, who pour their heart and soul into their work... because it transcends the product and serves to connect spirits to a higher place. Ledisi's song and voice helped to keep me grounded and reminded me that no matter how things looked or felt, it was going to be alright.

Today, I needed to be reminded of that. It feels like everything is crashing around me... I'm believing people who are showing up as liars and fakes, I am waiting on others to do what they say they will do... I'm waiting for miracles and blessings (mostly financial) to take the pressure off my back from these bills... I am dealing with aches and pains in my body that I just don't understand and can't seem to get past. Its a lot right now... and while I'm not complaining about any of it, I am stressed a bit. But... its gonna be alright.

LEDISI - Alright  (Lost & Found 2007)

This life can make me so confused
But it's alright
Living day by day I feel so used
That ain't right
I just wanna run and hide
But I don’t have the time to cry
And it's alright
Alright, alright
Many thoughts are running through my head
It’s alright
Wishing to be somewhere else but here
And it's alright
I can't wait to see your face
I need a smile and your embrace
And I’m alright
Alright
Yeah


Hook:
Life can bring us through many changes
And it's alright
Just don’t give up know that it’s gonna be alright
People come and they go
That’s just the way that it goes


Everything is everything
And it's alright
Sometimes the rain it makes me sad
And it's alright
Some things in the world they make me mad
And it's alright
In the morning when I see the sun
I know I'm not the only one
And it's alright
Wish I had some money to pay my bills
I can’t even buy that dress on sale
But it's alright
Having money don’t mean a thing
Loving you is everything
And I’m alright


Hook:
Life can bring us through Many changes
And it's alright
Just don’t give up know that it’s gonna be alright
People come and they go
That’s just the way that it goes


Everything is everything
And it's alright
ooo, everything is everything
ooooo its gonna be alright
ooo everything is everything
ooooo,its gonna be alright


Hook
-----------
(Ledisi, Alright - acoustic version)

Its gonna be alright... everything is everything... its alright. (smile, tear)