A Pink Glove Video

Friday, December 31, 2010

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

Onc Visit

Thursday, December 30, 2010

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

Wednesday, December 29, 2010

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.

Visiting with Friends

Tuesday, December 28, 2010

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

Monday, December 27, 2010

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

Sunday, December 26, 2010

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

Saturday, December 25, 2010

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

Friday, December 24, 2010

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

Thursday, December 23, 2010

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

Wednesday, December 22, 2010

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

Tuesday, December 21, 2010

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

Monday, December 20, 2010

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

Sunday, December 19, 2010

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

Saturday, December 18, 2010

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

Friday, December 17, 2010

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

Thursday, December 16, 2010

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.

First Mets Coffee Group

Wednesday, December 15, 2010

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.

Physiotherapist - 6 month checkup

Tuesday, December 14, 2010

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.

Audrey's Eulogy

Monday, December 13, 2010

Thank you all for attending my Mom’s memorial service – and joining us in honouring her and celebrating the many ways she touched people’s lives here in Qualicum and throughout her 80 years with us. I’ve only come to appreciate Mom’s true greatness through what other people have told me about her.

I’d like to reflect on Mom’s life since she was diagnosed with cancer. She fully embraced life, and found ways to express her love and caring for others despite her illness. Her great character over the last year certainly made it much easier on her family, and the fact that she had little pain or physical suffering, was a true blessing.

Listening to my eulogy, you may be left with the impression that my Mom’s approach to the cancer diagnosis, is the preferred way to work with a life threatening illness. And I’m about to describe the many ways she inspired me with her strength and resilience.

But I just want to add as an aside, as a cancer doctor with a passion for support groups, that there is no best way to approach cancer. Each of us is different, and we will find our own way. If I’d offer an advice, for those with an illness and the family members, I’d say to be honest with your emotions, both to others and to yourself. It’s perfectly human to be angry, anxious, scared, depressed, and frustrated. It’s best to express these emotions to others, to open up the communication in connection and support. That is the starting place to the healing journey. Enough with the advice.

We got the first impression of Mom’s strength and perhaps the magic that surrounded her when she was first diagnosed. She first developed electric sensations in her abdomen that shot up her chest during a trip in Greece a year ago. She became progressively confused, and by the time she got to the Nanaimo Emergency department, she was babbling about being on the high seas. As if on cue, while Mom listened to the doctor describe the tangerine sized tumour in her brain she seemed to awake from her reverie. Confronted with this awful news she said “Well, I’ve got it. I’ll have to accept it, and we’ll just go down that road.” After which she again digressed to her inner visions of boats and planes.

Mom was stoic right from the start. Through the surgery,and the rest of her treatments her mantra was the famous British slogan created during the war:
“Keep calm and carry on”.

And if you think about it this vivacious, active, intelligent, engaged woman’s life was shattered by this diagnosis. And it must have been painful lying in bed, and it was boring, and just so incredibly frustrating for her. After working so hard to become self-sufficient in every way, it must have been devastating to lose her independence.

And yet, I can hardly remember even an inference of complaint from her. Not that she wouldn’t ask for help from her others. It’s just that she was so busy considering how others felt – especially her family – that her focus was rarely on herself.

Even more so, her sense of humour and wit, remained unstoppable to the end.

I remember staying at her bedside after her brain surgery in January. The evening before I was travelling back to Halifax, I was feeling really sad to see my mom looking so frail, and knowing I would soon be leaving. Mom was bandaged up, on the brink of sleep, and very weak. I leaned over and gave her a kiss on the cheek, and in the most earnest voice said “Mom, I love you a lot”. Her whisper was barely audible in replya “and I love you….. a little.”

We had the major decision to make at the end of her radiotherapy as to whether she could return to her home or to go immediately to the Manor. The sad truth was it was too dangerous for her to be at home by herself (although she would contest that) – but she agreed to the nursing home because she didn’t want to be a burden to her family.

In march on the day that I would travel home again, with great trepidation, I dropped off Mom at the Manor. I was thinking she’s going to be upset, sitting in her room alone. But as soon as she got to the floor, she spotted Aldine in her wheelchair. The two held each others arms, their eyes just glowing. Aldine was saying “Oh, Audrey, it’s so good to see you, you were the very first volunteer who took me out for a walk when I first arrived here. I really appreciate that.” The two just chatted away like they were life-long friends. As it turns out, for the subsequent six months, every few nights, Aldine would give mom a reflexology session. Placing her healing hands on Mom’s feet, Aldine would help Mom relax and be energized by the treatments. I know Aldine loved these sessions and was getting as much out of them as was mom. But Mom reciprocated by arranging for a monthly manicure for Aldine. Even in sickness, in the last few months of life, Mom was deepening the bonds with her friends and family. Her light was glowing ever so brightly.

The other word that comes to mind when thinking about Mom in the last year is
fearlessness. And fearlessness does not mean having no fear. It more the willingness to follow own’s heart, with the confidence that you’ll have the strength to face whatever arises.

One of the cards that Mom received had a famous quote from Mother Theresa “I know God won't give me anything I can't handle.” She cried when she read those words, and it appeared to increase her resolve to “Keep calm and carry on.”

I thought Mom was particularly brave when she travelled to Halifax in August accompanied by her grandson. Her energy was starting to wane, she was more unsteady on her feet, and her memory was quite poor. But etched forever in my mind is a memory a sunny afternoon in the in public gardens listening to the big band sounds.

During that trip , my wife, Cara, and our boys, aged 11 and 15, and cousin James, took Mom to Peggy’s Cove. Everyone, including mom, wanted to get to the top of the huge boulders, for a look out over the ocean. This meant a little mountain climbing, so with one young man on each arm, and a third pushing up the rear (literally), they hoisted mom up top to a wonderful view. The journey back down the rock face was even more interesting, but mom never complained, and we have a wonderful picture of happy kids standing beside a glowing-faced Audrey.

I think Mom went through a spiritual transformation in her last months. She began to see beauty in the world wherever she looked. Each person she was with was just ‘beautiful’. When her 15-year-old grandson so lovingly fed her, she was brought to tears with a sense of gratitude. And my heart is forever imprinted with the way she said to me “Your such a wonderful son.”

The last week of her life was a very precious time for me. I was on the very early morning shift, and we had some intimate conversations in the middle of the night as she waned in and out of lucidity.

She told me that she didn’t want me to be sad after she was gone. I told her that it was natural for us to feel those strong emotions – that people need to grieve in their own time and in their own way. But I also told her that despite the fact that she was within days of her death, there were times I felt great joy just being in her presence. It was as if our spirits had melded somehow, and I truly felt lightened and more spacious as I’d walked away in the morning. I said that we could feel both happy and sad at the same time.

She thought about what I said carefully – and said “I want you to share this with the others” which I suspect she meant our family, but I somehow hope we can all hold those feelings when reflecting on Audrey’s life.

I was especially interested in our nightly conversations because I was worried that Mom was scared on dying. She had been having nightmares about wolves and cougars circling the cabin. And I know that as human beings we have an instinctive fear of death, that our body and psyche will continue to cling to life.

Mom was very clear with me. She was not scared of dying. She has a very strong faith, and there was just not an issue of the afterlife for her. In fact, in this church in march, a parishioner approached Mom, saying how inspired she was with mom’s faith when they had spoken weeks before. This young woman was in tears at the end of the conversation. That spiritual light was being handed over to the next generation.

The last 24 hours of mom’s life were quite remarkable. Lou Ann arrived from India just in time to have the last meaningful words. Remarkably, Mom didn’t suffer much. There was an episode of shortness of breath, that quickly settled with medication, and she slipped into coma, and then into the next realm less than 12 hours later.

Mom was surrounded by the three of us at her last breath. And is so typical for Mom, her last act in this life was to bring her loved ones together.
Mom brought us together. It was most beautiful shared moments of our lives.

Thank you again for sharing this time with us – and honouring the life of this great woman.

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

Sunday, December 12, 2010

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

Saturday, December 11, 2010

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

Friday, December 10, 2010

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

Thursday, December 9, 2010

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

Wednesday, December 8, 2010

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.

Coping Strategies for the Holiday Season

Tuesday, December 7, 2010

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

Monday, December 6, 2010

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

Sunday, December 5, 2010

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

Saturday, December 4, 2010

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

My CT Results Are In

Friday, December 3, 2010

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

Thursday, December 2, 2010

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

Wednesday, December 1, 2010

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.