No Blog ‘Till May ~6

Gone to Philadelphia to attend the metastatic breast cancer conference ... so no new blogs here until I get back.

CT Scan and Bone Scan Results

It wasn’t long before the door knock came and in walked my Onc. He asked me how I was feeling … do I have pain of any kind, how is the Xeloda treating me? I’m thinking to myself … enough of the small talk, give me the news.

This is sort of how it went … 

There are new growths on the liver …. blah blah blah … Xeloda no longer working …. blah blah blah … options are limited …. blah blah blah … chemo …. blah blah blah …. study drug …. blah blah blah.

I’m in shock as he left the room and in comes the research nurse. I ask her to repeat some of what the Onc said …. Seriously, I only heard a few words here and there.

So in short … my options are Vinorelbine by IV or a study drug TK1258 by pill. I’m hoping I qualify for the study drug because it’s a pill and will give me better quality of life.

Well … I’m going to Philadelphia and will deal with all this later.

New Lymphedema Glove

Somewhere in March I ordered a custom lymphedema glove that came in and was ill fitting. It was too loose on the top … not enough compression.

Firstly, the reason I need a custom glove is that most gloves are tight at the wrist. I need a glove that flares out a bit at the wrist so that I don’t have the double compression from the overlap of the sleeve and the glove. 

Secondly, my hand tends to retain a lot of fluid. Most gloves I’ve tried cause the fluid to pool on the top of my hand. I need a glove with extra compression on the top. Well as promised, the manufacturer sewed in a filler patch on the top of this new glove. 

So far, I really like how it feels. I’ll let you know if it does the trick.

Now Here’s a Switch

Last week D burnt the tops of two fingers and he goes for daily dressing changes at a local hospital. Guess what, I now drive him and he calls me to pick him up. Usually it’s me getting some work done and then having to call him on my cell to have him pick me up.

I don’t know … it’s just different. D says he feels the same way.

As for the dog… she is just happy to go for another car ride.

Put Your Petro-Points Towards the Fight Against Cancer

As taken off their website ...

It's never been easier to join the fight against cancer. The Petro-Points™ Program and the Canadian Cancer Society have teamed up so you can donate your points. 

How do your Petro-Points make a difference?

By donating your Petro-Points to the Canadian Cancer Society, you are helping the organization offer these information and support programs:

• Cancer Information Service - a national, bilingual, toll-free service that offers vital information about all aspects of cancer to patients, their families, health care professionals and to the general public.

• CancerConnection - a one-to-one, telephone-based peer support service that matches Canadians diagnosed with cancer, or their caregivers, with trained volunteers who have experienced cancer themselves, either as a patient or as a caregiver. 

Philadelphia in Five Days

So this Friday I leave for Philadelphia for the 4th Annual Conference for Women Living with Advanced Breast Cancer. I’m especially excited because I’m stepping out of my comfort zone by taking this trip and travelling on my own. Cancer has stripped away some of my confidence and this trip is a bit about getting some of it back.

Also … I am so looking forward to meeting some fellow mets gals. I think just being in the same room with other ladies that are in similar situation as mine will be so amazing. I’m almost tearing up thinking about it.

As far as packing goes, I’m pretty well set. When I first registered for the conference, I was planning to bring my laptop and blog while I was there however; I’ve more recently decided to keep it simple and leave the computer at home. I really want to focus on making it as carefree a trip as possible. So no blogging while I’m away. 

And … it looks like the weather in Philly should be pretty nice for the weekend. Fingers crossed ... I think I’m set.

Hope for Metastatic Breast Cancer

From Rob: Looking at the cards completed by participants at the end of the weekend I recently found this card:

I came... held tight by fear
I stumbled... my pain was too heavy
I wept... feeling less than whole
I leave... Comforted
... Affirmed
... Wanting to shine my light
... Knowing I am not alone
... Knowing I am whole

Shout Out to the Breast Friends Dragon Boat Racing Team

As taken off their website …

Breast Friends Society sponsors the Breast Friends Dragon Boat Racing Team of Edmonton. We are women from Edmonton and surrounding communities. We have all had a diagnosis of breast cancer and we train to race in dragon boat competitions.

Breast Friends are from every walk of life, and have varied fitness levels. Each member is a powerful example that women can lead full and vigorous lives after surgery and treatment for breast cancer.

Alicia's Story

I remember coming across this ongoing series a while ago. I didn't follow it all that close.
At 23, Alicia Parlette, was diagnosed with cancer. At the time, she was an intern that became a copy editor for the S.F. Chronicle. She passed away yesterday.
Here's a link to her series.

Building My Stamina Up

Next week I’m off to a metastatic breast cancer conference ... so I thought I’d try and build up some stamina by walking a bit more and/or just being on my feet a bit more. So the last couple of days I’ve been quite active … spending time at the mall and such.

What I found is that my stamina is pretty good but the bottoms of my feet are sensitive. It doesn’t take long for them to feel like they are burning up. I had thoughts of sticking them into a bucket of ice water to get some relief.

Way back when, my Onc suggested I get some gel insoles for my shoes, so today I picked some up. I’ll let you know how they work out.

I should mention, today is the last day of my Xeloda pills so I’m thinking the side effects should start tapering off. In the mean time, I’m going to give my feet a bit of a break.

Chiropractor Appointment

This morning I saw my chiropractor. I had previously decided this would be the last appointment for my lymphedema arm for now. Between his deep massage therapy and my daily exercise and stretches, the swelling had gone down quite a bit. Not only has my mobility improved but the sore ach has pretty well disappeared.

Knowing this would be the last time I’d see him for a while, I had a couple questions to ask him. Firstly, I wanted to ask him about what stretches or exercises I could do as I was still having some difficulty putting on jackets. My arm just didn’t want to bend that far back. He said no problem, he pointed out which muscles were weak and showed me the stretches and exercise I needed to be doing to strengthen those muscles. Excellent, I said! Secondly, I asked him if he had any advice for me as I was going on a flight next week. He said, for the flight … make sure to wear my sleeve and glove and wear support socks for my feet. 

He did some deep massaging and stretches on my arm … and away I went.

CT Scan and Bone Scan

Yesterday I went in for my CT scan and bone scan. First the CT scan and getting an IV. Finding a good vein in my left arm is getting to be a bit tricky so the nurse wrapped it with a hot towel, a hot pack and then some fabric to keep all that heat in. A few minutes later she took off the entire wrap. She got a vein first try … good job! She then poured me my one liter ‘contrast’ drink and sent me to the waiting room so I could slurp it up. A short time later I had my CT scan.

After my CT scan, I went to nuclear medicine for my bone scan. When I got there I was asked if I’d like to take part in a study where the hospital would inject Na18F as a tracer instead of 99mTc-MDP. I was not great at chemistry in high school so I’ll just give you the long and short of it … there is a global shortage of the one contrast agent and they are testing this other one in its place. I agreed to the study and filled out the consent form.

When the nurse came by with the injection needle, he walked in caring a small metal box. When he opened the box there was a syringe enclosed in a metal cylinder one inch in diameter. I asked … what’s with the fancy syringe. He said, “Oh that is tungsten metal and is used to shield the staff from the radiation within the syringe. Ugg … I just then felt like a lab rat.

On a side note, Na18F which is the new study tracer is actually made at the Cross Cancer Institute here in Edmonton.

Scanxiety

I’ve been feeling quite anxious lately. It’s in anticipation of my CT scan and my bone scan which is this afternoon. I’ll get the results back in about 10 days when I see my Onc.

Sometimes I wish I lived in lala land and didn't have to do them.

An Inspiring Cancer Video

The power of asking

At a sunday morning of a weekend retreat, Tim has just told the story about being with his father (from the chapter called When Fear is the Teacher, in our book, The Healing circle). see http://healingandcancer.org/booksanddvds

Judi, then added to this story. Her husband's grandfather, John, was nearing the end of his life in hospital. His second wife was admitted at the same time, and though, too weak to safely make the trip to his wife’s room, he sensed that she was dying, and in the middle of the night, staggered to her bedside to be with her for her last breaths.

As it turns out, John’s one fear at the end of his 94 years was to die with no one at his side. At the end of family reunion/birthday party, Judi asked John if there was anything she could do. He asked her to stay with him for the next few days as all the other relatives were going home. In the middle of the third night, John began to have visions, and seemed to be having a conversation with an invisible friend. He reached out his hand saying “It’s now my time to do the talking.” (Judi thinks he was talking to his first wife (deceased) because she often dominated the conversations). John was transformed by the vision – he literally glowed with a warm and joyful light.
The next morning he told Judi that he was no longer scared of dying alone, and told her that she could go home. John died just a day later – waiting until his son was at his side.

Birds of a Feather …

This morning D and I decided to go for a ride to William Hawrelak Park, one of the parks not too far from our home. I especially enjoy this particular park as it has a man-made lake. We parked the car and went for a stroll.

There were all sorts of birds … ducks, geese, loons, seagulls and blackbirds just to name a few. Even tho there was still a fair bit of ice on the lake, the birds didn’t seem to mind as they all seemed to be having a great old time.

What a pleasure it was to watch. I most enjoyed watching the male geese … making sure all the other male geese kept a fair distance from their mates.

I think I’m going back for another visit tomorrow …

The Knitting Group

The group was quite small today but we still had a nice time. I find knitting to be such good fit because you can knit and chat at the same time. Also, there are so many different patterns and yarns these days; it’s so easy to be inspired and try them out.

Only one problem with this knitting tho… it’s a Xeloda side effect. I have dry and peeling skin at the finger tips. The tips of my fingers are all shiny and thin where they touch the most. And working with yarn only exacerbates the problem. As I’m knitting, I can almost see the layers of skin peel off.

Latex finger cots are something I’ve been thinking of trying for quite a while now. So today I stopped at the drug store and picked up a pack. I unrolled them on my thumb and pointer finger on my right hand as they seem to be the most used and abused. After wearing them about half an hour I notice they were a bit tight where they unroll, so I just snipped off the excess. Now they just reach down from the finger tip to the second joint.

Nothing like a little experimenting … I’ll let you know how they turn out.

Dinner and a Movie

Last night I went out for dinner and movie with four long time friends. There wasn’t any shortage of conversation and it was really a fun time. Even tho I truly would be lost without my cancer buddies ... it sure is nice to be with and talk to regular folk... where office politics and shopping were the major topics of conversation.

After dinner, we were off to see the movie, The Bounty Hunter with Jennifer Aniston. I hadn’t been to a movie in a very long time. As I sat there watching all the ads come up just before the show... I almost came to tears. I felt normal. Here I was... with five friends ... to watch a movie.

It’s really hard to describe ... just feeling so alive ... not a care in the world.

Hot Flash

This morning I received my copy of Abreast & The Rest, it’s a woman’s breast gynaecologic cancer newsletter. One of the articles in the newsletter under Hot Flashes .... haha ... was an article entitled Hope Air Celebrates.

Hope Air is the national charity that helps Canadians get to medical treatment when they cannot afford the flight costs … and treatment is outside their home communities.

For more information, visit their website at ... http://hopeair.org/index.html.

Shout Out to the Living Beyond Breast Cancer Conference

As per their website ...

Join Living Beyond Breast Cancer on May 1-2 in West Conshohocken, Pennsylvania, for our 4th Annual Conference for Women Living with Advanced Breast Cancer. Held just miles from the city at the beautiful Philadelphia Marriott West Hotel, this national conference focuses on your unique concerns as a woman living with metastatic breast cancer.

At this event, you will:

• Learn about medical treatments for bone, liver, lung and brain mets

• Hear about clinical trials and cutting-edge therapies

• Ask questions of providers with a special interest in metastatic breast cancer

• Get advice on managing side effects

• Find support for your emotional and practical concerns

• Be inspired by speakers who have coped with metastatic cancers

• Connect with hundreds of women like you 

Did I happen to mention ... I’m going .... so very excited!

Lymphedema Continued...

This morning I went back to the medical supply store I wrote about last Saturday... the one where I had ordered a custom lymphedema glove and it ended up being ill fitting.

After I left on Friday, the clerk called the manufacturer once again to explain that fluid was pooling on the top of my hand. She said they were going to order a new glove and sew a filler patch in on the top. That will flatten things out and help stop the fluid build up. I was thrilled with the news.

I decided to try one of the ready-made gloves. It fit me so well I decided to buy it too. Besides, it doesn’t look like this lymphedema is going to go away too soon and a second glove will come in handy. 

After all that, I shopped and picked out a mastectomy bra. I mentioned to the clerk that I wear my bra’s day and nite. She said she had a soft bra for just for sleeping. I said that I’d ‘sleep on it’ ...haha ... I`ll pick it up when my glove is ready.

So now I have a new bra, sleeve and glove.... woo-hoo!

Looking for More Options

This morning I was looking at my lymphedema arm. The Spiderman Kinesio tape was barely hanging on to my skin and it had slowly unravelled bit by bit for the last 10 days. I started trimming with scissors at my wrist and then my shoulder ... so today off it came. At this point I’m convinced that it’s helpful and I’ll definitely have another put on. 

But my cycles keep changing the amount of swelling ....one day up and then down. So I was thinking... maybe acupuncture could help level off the symptoms a little. One hitch tho is that I should avoid those small needles in this arm.

Does anyone know or have heard of any stories of lymphedema arm being treated with acupuncture? 

tia ...

New Glove and Compression Sleeve

When I went to pick my new custom fitted glove for my lymphedema arm up, I was a very disappointed that it was not a good fit. It was loose on the top of the hand and since this was where most of the fluid collects, I needed to get a better fit. 

While I was there, they phoned the manufacturer and agreed to sew another glove for free. 

Because my existing glove is wore out, I’m going to wear one glove over the other and see how that works out.

The Friday Knitting Group

Today the facilitator asked us if cancer has changed us and whether others have noticed a change in us. Well we all had similar stories of how cancer has changed us ... we especially spoke about how we had become stronger individuals. One thing we all agreed on is that we were able to say ‘no’ more easily ... whether it was at home to family or at work. I guess you could say we all learned how to set a few more limits and boundaries.

A few gals said that people have noticed a change in them as well. I can’t say anyone has mentioned that I’ve changed ... tho I’m sure I have.

Throughout each session we admire each others knitting projects. I showed off my Moebius scarf that I knitted last weekend. There are a few different ways to do the Moebius. Here is a link on YouTube if you’re interested. And here is a picture of mine.

Just before the end of the class ... we were invited to check out some of the other yarns available. I scooped some nylon ribbon yarn. Who knows what I will create.

I tell ya ... these two hours go by so quick ...

Blood Work and Oncologist Visit

This morning I had my blood work and my Onc visit. I was scheduled for the blood draw at 10:00 but when I got to the lab ... oh boy was it lined up. I finally got in for my needle stick at 10:55 and then with my Onc visit at 11:00. 

Of course the Onc didn’t have the lab results back but he called me in and did a quick exam. The same questions always come up ... any issues with diarrhea, mouth sores or cracks in my hand or feet ... and once again I was happy to report ‘no issues’. He said he’d give me the same prescription for my Xeloda when the lab work came back and everything looked good. About 45 minutes later, I got my prescription and off to the pharmacy I went. Another 45 minute wait and I was off and running.

No time to blog....`cuz I was meeting my Second Cup coffee group at 1:00 pm. I was a couple minutes late but no troubles because C had secured our soft comfy chairs. A short while later T joined us and we all had a nice chat.

So all in all a hurry up and wait kinda day ...

More Kinesio Tape

I just got back from my Chiro appointment. He looked at my arm and said the swelling had gone down considerably from last week. I thought it had gone down too but when you look at something every day ... it’s hard to notice the subtle changes. 

At a previous appointment he mentioned we could apply some Kinesio tape to my shoulder. So today I brought in my stash to apply to my right lymphedema shoulder. Below is a picture of what he did.

He again told me how Kinesio tape works. The tape reminds the body where it should be and encourages it to return to the normal position. For example, having it on my shoulder helps my less used muscles to return to their proper position ... so when I slouch ... the tape provides a gentle tug which then reminds me to pull my shoulder back. The tape works for my wrist and hand so it should work for my shoulder. I`ll let you know how this turns out.

Cool eh!

The Living Well Group

Today I had my final Living Well session with the group. The homework from last week was to create letters of gratitude and then read them to the appropriate person. I failed to do my homework so have nothing to offer about this experience. Sorry. 

P presented one of her Doctors with a letter of gratitude ... now isn’t that a thoughtful thing to do. I know I take my Doc’s for granted.

Even tho this was the last meeting for the group, there was still one final assignment.

So here it is:

• Consider which institution or organization promotes or enables an outcome that you value and then find out what you can do to make this institution or organization better.

• Dedicate about three hours each week for the next three to six months doing something to help make this organization better. The idea here is for you to use your strengths for this task.

• Keep a journal of how it feels to work for such an institution and then reflect on how you feel about yourself and the institution.

Wow, this one’s a biggy.

SPIRIT JUMP

UPDATE: 


If you are visiting this site because you received a card through Cards 4 Cancer Day WELCOME! You can receive cards year round from people around the world who want to help lift your spirits. Please take a moment to read through this page to learn how you can get more cards for yourself or your loved one.

To learn more and to sign up visit www.cards4cancer.org

What Is Spirit Jump

Spirit Jump is a 501(c)(3) grassroots nonprofit organization with a mission to provide hope and comfort to the many men, women and children battling cancer. Spirit Jump accomplishes this by providing uplifting cards and inspirational gifts during this most difficult time.

How You Can Help

Become a Spirit Jumper and send cards or small gifts to those battling cancer. When you become a Spirit Jumper we provide you with the names, stories and pictures of men, women and children battling cancer. If any of these stories touch you let us know and we will provide you with their mailing address. This is a direct way for YOU to help the many in need.

There are no membership fees, minimum requirements, "adoptions" etc... all we ask is that you read the stories and send Spirit Jumps to those who touch you. Enter you email address in the space below and click "join" to become a Spirit Jumper.

BECOME A JUMPER

How We Can Help You

If you or someone you know could use a Spirit Jump we would love to help. We have a short application to be completed by the person who will receive Spirit Jumps. You can access this application by clicking the link below or you can email us at needaspiritjump@spiritjump.com if you need any additional information or assistance in completing the application.

REQUEST A JUMP

The amazing thing about Spirit Jump is that both the person giving a gift (Jumper) often has their spirit lifted just as much as the person receiving the gift (Jumpee).

An Early Outing

I got up early today so I thought I’d step out for a Timmies coffee. I then went for a little drive and ended up at a park not too far away. It was so nice and peaceful there. I parked the car and rolled down the windows and just took it all in; the sounds of nature ... the birds, some ducks and geese and the odd squirrel in the trees. It was so serene.

It was interesting to watch the ducks and geese as they sat in the middle of this still frozen man-made lake, anxiously waiting for the ice to melt. I wish I’d brought my camera along.

There were also some geese wondering around on the grassy areas ... munchin' on some old grass. What was really sweet about it is that often they were walking in couples. Obviously they had found there mates and were just waiting for that darn ice to melt.

It was a real treat for me watch nature doing its thing. I definitely left feeling more calm and relaxed.

Happy Easter!

Chiropractor Appointment

This morning I visited the chiropractor. He asked how my arm was doing and I said I had relief almost immediately after my appointment a few days ago. I’ve been able to do stretches and exercises with more ease. He said that’s great. He asked me to lie down on the table where he proceeded to find the tight muscle in my right front shoulder. He dug his thumb in and stretched out my whole right arm. A pleasant feeling of ouch followed... I could just feel my whole arm relax. After working the muscles a bit more, he said ... I have something new to show you. He left the room and came back with some Kinesio spider tape for my lymphedema. He asked if would like to try it out and I said sure.

Here is a picture of my arm with the spider tape. I’ve also included a two minute video on Kinesio tape. I’ll let you all know how this works out.

Its Almost Time For Cards For Cancer Day

Check back soon for our new interactive website

As many of you know Spirit Jump has been working on our first big project, Cards For Cancer Day.  This small idea has turned into a virtual and ground movement! In a little over a month our Cards For Cancer Fanpage has reached over 7k fans and over 1k people around the world have officially signed up to make, collect and deliver cards to cancer patients around the world.

A few years ago we never would have imagined that an idea could turn into a project over night then become a movement in weeks reaching over 7 countries.  Social Media platforms have allowed us to reach supporters who speak different languages, live in different time zones and embrace different cultures. Yet it has been accomplished because no matter what continent you stand on or language you speak cancer touches all our lives in the same ways. No matter your culture, kindness and humanity lives in all our hearts. 

In the next two weeks thousands of cards will be delivered to hundreds of cancer centers throughout the world. Our goal of delivering 100,000 will surely be reached.  Visit our Cards For Cancer Day blog www.cards4cancer.org become a fan on Facebook/cardsforcancer and follow us on Twitter to watch how this small idea quickly spreads around the world.

Second Cup Coffee Group

Yesterday afternoon I was off to meet with the Second Cup coffee group. I wasn’t sure if anyone would be there with Easter coming up. But when I got there H was already sitting there reading the paper ... how nice. We chatted for a bit and then T came by. That really made me happy.

My goal in getting this coffee group together was to have cancer people connect, where we can speak freely about cancer. I’ve often heard cancer folk say; I feel bad for my family and want to give them a break from talking about cancer woes. To be honest, I find it hard to get cancer people out for coffee; however I think I’m making progress.

T asked if it would be ok to invite a gym buddy of hers who`s a cancer survivor. I said absolutely, that would be great. 

I’m afraid we might run out of the soft and easy chairs at the Second Cup ... but that would be a good thing.

Receiving A Metastatic Breast Cancer Diagnosis Video