Steve's Pet Project

Like Steve didn’t have enough to do; he’s added me to his list of projects. We’ve always been curious to find out how many people view this blog and now Steve’s been able to track not only the number of people but so much more. So, here are some interesting stats for you from Friday. On Friday there were 84 people who viewed the blog; 2 from the UK and the rest from Canada. From there, Canada is broken down by province then by city. Who are the 2 people from Quebec? It gets better. You can also track people by their internet service provider. Congratulations Western, you win top spot with 22 people (who all read the blog on their lunch hour…right?) Who was the person who viewed from the Marriott Hotel? The information is mind boggling…maps…bar graphs…line graphs…etc. but no names, so don’t worry.

I would be interested in hearing from people that I don’t’ know who have read the blog and find out our connection. (You can e-mail me at ksgroves@hotmail.com.) As Steve joked, it will be like playing “Six Degrees of Kim Groves” instead of “Six Degrees of Kevin Bacon.”

Right from the time of diagnosis, I have been very open to sharing this journey with all of you. My ultimate goal is to provide people with an insider’s perspective to breast cancer so they may be able to learn from the experience, provide support to others and remove some of the anxiety for those who may find themselves going along the same path. Feel free to pass it on.

me

Toga Party For One

Yesterday’s surgery went well. We arrived at the hospital at 8:30am and were sent to Surgery Daycare. From there it was the routine that has become so familiar…change into the gown, get IV hooked up and wait. Steve and I met with the surgeon around 11:15am. The surgeon explained the procedure and that I would be given a sedative that would make me feel like I had 2 or 3 glasses of wine...we all know for me, that’s more like 4 or 5 glasses. When I got into the operating room, Dave, a member of the surgical team, said they like to play music during surgery…great. We chose The Rolling Stones; then came the sedative. It was like being at a toga party, except I was the only one wearing a sheet. I was awake through the entire surgery so the doctor would periodically ask how I was doing. The only part of me that hurt was my butt because the operating table didn’t have a lot of padding. When the surgery was over, I was sent to recovery for 3 hours so they could monitor my vitals. I’ll be having a follow with my family doctor next week so she can remove the bandages.

A few of you have asked about the Web site that sells the t-shirts. I’ve pasted the link below.

http://www.planetcancer.org/html/store.php?sec_Id=7

Happy shopping,

me

T-Shirts

I’m happy to report that I’m on the upswing from my last chemo treatment and finding a bit more energy each day. Tomorrow I have an appointment at St. Joseph’s Hospital to get my port-a-cath put in. This is the device that will save the veins in my left arm over the next year. It will be used to draw blood and to administer the chemotherapy. I have to be at the hospital around 8:30am and I think the actual procedure is at 10am. I’m going to be starving by time it’s done since I can’t eat anything after midnight tonight. I’m sure I’ll have lots of details to provide you with once I get home tomorrow. Yippee, another scar for my collection.

I think most of you know my stance on cancer; it’s not something I run and hide from, it’s something I turn and laugh at. Having said that, I’ve been introduced to a place that sells some great cancer t-shirts (thank you Andrea/Cathy). Here are some of my favourites. (Prepare for foul language – sorry Nan, Nana, GG.)

CCKMA – Cancer Can Kiss My Ass
My To Do List 1. Beat Breast Cancer 2. Take Over World
F*CK CANCER (no asterisk on the actual shirt)
I Had Cancer And All I Got Was This Stupid T-Shirt
Instant Survivor – Just Add Chemo
WARNING – I Have Received Radiation Therapy. If You Can Read This You Are Standing TOO CLOSE!

I’m not sure I could wear #3 without a lot of explaining to Andrew and Sean. Maybe I’ll pick another one.

me

Genetic Counseling 101

Most people are surprised when they hear that only 5 – 10% of breast cancer is hereditary. The other 90 – 95% of breast cancer is caused by environmental factors. Because I fall outside the ‘normal’ age range for developing breast cancer, my doctors want to see if I have a genetic mutation. Patients who have inherited breast cancer have a gene mutation in BRCA1 (Breast Cancer gene 1) or BRCA2 (Breast Cancer gene 2). I chose to go through with the testing which involves taking blood samples. From here, the test will take 6 months so I should find out the results sometime in October.

There can be a few different outcomes.

1. There is no gene mutation detected, chalk it up to some unknown environmental factor.
2. There is a gene mutation; the cancer was inherited; we do nothing.
3. Same as 2 except we make testing available to my parents to see who I inherited this from. This could lead to testing of other blood relatives if they chose to have the genetic testing done.

Just because someone has a BRCA1 or BRCA2 mutation does not mean they will develop cancer but their chances of getting cancer are increased. With BRCA1, breast cancer increases 50 – 85%, ovarian cancer increases 20 – 60% and prostate cancer increases 3 – 6 times. With BRCA2, breast cancer increases 50 – 85%, ovarian cancer increases 5 – 20% and prostate cancer increases 3 – 6 times.

There are many touchy issues with genetic testing. Some people just don’t want to know, which is completely understandable. Because I already know I have cancer, I want make information available to other family members (if they want it) that could possibly help them. For example, if I did have a gene mutation, other blood relatives would have access to testing for themselves, access to earlier preventative screening and access to earlier treatments.

The other sensitive issue surrounding genetic testing is genetic discrimination. Because insurance companies have access to your medical records, if you have a known gene mutation, you could possibly be denied insurance or be forced to pay huge premiums. I say ‘known’ gene mutation because everyone has some kind of gene mutation; either they don’t know it or scientists haven’t figured out the test yet.

On a funnier note, the genetic counselor went through a series of questions with me when we met. My favourite was, “How often do you have clinical breast exams?” I explained to her that she was the only medical person I had met in the last 3 months that didn’t want me to take my shirt off.

me

Radiation 101

On Thursday I met with my radiologist. I have learned that I will be starting radiation after chemotherapy is done. Unlike chemotherapy that destroys cancer cells throughout the entire body, radiation will destroy any cancer cells that my have lingered at the original site. As with all treatments, there can be side effects which may include darkening of skin, arm swelling, blistering of the skin, fatigue, lung scaring etc. etc. In total, I will be having 30 radiation sessions; everyday, Monday to Friday for 6 weeks. Guess I better get a parking pass for the hospital!

I will meet again with the radiologist in August to plan out the treatments i.e. should I only get the breast radiated or the breast, and lymph nodes under the arm and around the collar bone. I will also be getting tattoos that they will use as markers to ensure that the radiation is targeted at the same area for each treatment. I wonder if I can get smiley face tattoos?

It was great to see everyone at the Year End party yesterday. I must say that your singing has improved tremendously since I’ve been away. (FYI…the card was in the mailbox when I got home…thanks.)

I had the appointment with Genetic Counseling yesterday. Stay tuned for Genetic Counseling 101.

me

Time Management

This is the part of the treatment that I find most frustrating…the fatigue. Basically I find that I have about an hour and a half of energy for the day so I have to consciously decide how to use that time. After the first treatment, around day 5 or 6, I thought I could get a few things at the grocery store. I quickly realized about 15 minutes after I got there that I needed to head back home while I could still drive. It’s frustrating when your mind thinks of a millions things you could do but your body just can’t to it. So, I have to learn to make the most of the energy I have. I like to pick the kids up at the end of the day..there’s ½ hour. I like to go for a walk…there’s ½ hour. As you can imagine, the other ½ hour gets used up very quickly.

Today Steve and I have our initial consultation with the radiologist. Tomorrow will be the consultation with the genetic counselors.

Off for a nap,

me

Dear Andrew and Sean,

It has occurred to me several times over the past few months that Andrew and Sean will probably have little, if any, recollection of me having cancer when they grow up. I can’t say that I remember many things from when I was 4… maybe a few things from when I was 6. So, although this blog is for me and you, I also write it for Andrew and Sean. Someday maybe 10, 15 or 20 years from now, when I think they could use a little inspiration to meet whatever challenges present themselves; I’ll give them a copy. Maybe this will become one of those stories I pull out many times. I can hear the boys now, “Here goes mom, talking about her blog again.”

Maybe there will be a cure by then…you never know.

me

Chemo Treatment 2 of 8

Another round of chemo done…1/4 of the way there. I thought I would walk you through the day just in case you’re curious as to what happens. I had Steve take 2 pictures while I was getting my chemo, one with my hat on and one with my hat off. In the picture with my hat off, the glare off my head looked too bright so I chose the hat on picture. I’ll work on getting a good bald picture on soon.

11:00am
Check in with Clinic II, fill out paperwork

11:30am
Report to Lab for blood work to make sure my blood counts are back in the normal range before I can have more chemo.

12:00pm
Meet with my primary nurse to go over results from blood work. I was surprised to find out that most of my blood counts were better than they were before my first chemo treatment. Take first anti-nausea drug.

12:15pm
Meet with the nurse practitioner who specializes in Breast Cancer. Review side effects from last chemo. In terms of fatigue, they say exercise helps so I need to make sure I get in daily walks. The chemo gives you a really dry mouth. I have to have water beside me at night because I wake up several times a night feeling like there isn’t even a drop of saliva in my mouth. More water = more trips to the bathroom. The nurse suggests I rinse with water and baking soda several times a day to help with the dry mouth.

1:30pm
Check into the “Chemo Suite” (that’s what they really call it). As soon as you get in your chair, the nurse grabs a nice warm blanket to put over you because the room is a bit cool. They keep the temperature down to help with the nausea. The nurse then hooks up the IV and puts hot packs on your arm because the drugs feel cold when they go into your veins. At my next chemo appointment on May 26th, I’ll have the port-a-cath in which will be nice. Take 2nd anti-nausea drug. First chemo drug by syringe through IV then second chemo drug by drip through IV.

3:15pm
Home

That’s how it all works.

me

Random Hair Thoughts

By the end of the day yesterday, I had a bald spot on my forehead the size of a golf ball and the rest of my hair was looking pretty thin. So, I called up my wonderful neighbour with the clippers and she shaved it all off. Below are some random thoughts that have been swirling in my head and some interesting thoughts from others. I thought it would make a nice Top Ten list but I could only come up with 9 things. Here they are in no particular order although I think Sean’s comment would be number 1.

-My head feels like a big cactus except it’s not my hand that hurts when I touch my head, it’s my head that hurts.
-I look like a mannequin without the 20 inch waist.
-I look like Mr./Mrs. Clean…I need one hoop earring.
-My head is like one massive piece of Velcro…my hats will never blow off.
-Sean’s first comment was, “You’re bald. You look funny. Your hair is like Squidward’s from Sponge Bob Squarepants.”
-Andrew just gave me a raised eyebrow smile.
-Steve said that he’s glad I have a nice shaped head.
-I think I could use my head as a giant lint roller.
-It’s breezy when you open the fridge.

Happy 10th Steve.

Love,
me

Shedding

One strong wind and the rest of my hair will be gone!

me

Tour Guide

Since the beginning of this journey, I have been looking for cancer patients my own age to compare notes with. I didn’t expect that one of them would be a friend of mine. On Saturday morning I got a phone call from a good friend calling to say that she had just been diagnosed with breast cancer. We are the same age and have received similar test results; small tumor with lymph node involvement. I’m still shocked. I know she is reading this and perhaps some of her friends and family are too. Know that I will be a very good tour guide on this journey and together we will make it through. Buckle up…the ride is about to begin.

Steve has said that some women get together to work on scrapbooks; we’ll get together to work on our binders.

All the best,

me

Fang and Happy

I was hoping to have hair for our anniversary dinner on Thursday night but I’m not sure that’s going to happen. Every time I touch my head, my hair falls out…we’re not talking 2 or 3 pieces of hair, it’s more like 20 or 30 pieces of hair at a time. I have to stop myself from continually pulling it out; it’s like when you start peeling after a sunburn and you keep picking at your skin except it’s my hair. I’ll have to get it buzzed again…right to the wood this time so it’s not all patchy and uneven. I never thought I’d see the day when my brother would have more hair than me.

We took the boys to Storybook Gardens this afternoon so they could run around and play. On the way home we stopped at a pet store and bought them their first ‘pets’. I use the term pets loosely because they each got a Beta fish. Low maintenance is key. Andrew named his fish Fang and Sean named his fish Happy. We’ll see how long they last.

me

In Sickness and in Health

Just touching the hair on the top of my head hurts. It feels like every piece of hair is a needle sticking into my head. I guess that means that the chemo has made its way up there.

Steve and I will celebrate our 10th anniversary next week…hard to believe ten years has gone by already. We were talking about what we were doing ten years ago and had to laugh because I was sick. Long story short, I was so stressed with year end at work and all the wedding plans that I ended up in the hospital. The more things change, the more they stay the same?!?!

I had the opportunity to get out and see some friends this week. It was so nice to have some social interaction…that’s what I miss most about being at home.

Today we’re off to my parents place to celebrate Emma’s (my niece) 7th birthday. Looks like a great day for a BBQ.

Have a good weekend.

me

Little Smoochy Mama

Sean is a born comedian. I’m sure the staff at the daycare would back me up on this one. He is the king of one liners and has many different accents, all at the ripe old age of four. Sean has a new nickname for me that he says in his Jamaican accent…. I’m his “Little Smoochy Mama”. I have no idea where it came from; that’s just typical Sean.

I can tell that my hair will probably start to fall out soon. Today when I pulled out a gray hair, it came out with very little effort. I guess the good thing is that I won’t have to shave my legs all summer…another perk.

Take care,

me

Look Good; Feel Better

Barb’s visit went well yesterday. She was here for 2 hours, did some dishes, went over recipes and did some laundry. It felt weird watching someone do that stuff around the house but it was so nice to have it done. She’s going to come back on Thursday and cook 3 or 4 meals.

Today I went to a workshop at the Cancer Clinic. It was called ‘Look Good; Feel Better’. It’s a program put on by the Canadian Cosmetic, Toiletry and Fragrance Association Foundation. Basically dozens of companies donate product for the workshops and volunteers from the cosmetic industry give you tips on skin care, sun protection, nail care and makeup application. You get a shoebox filled with stuff from Clinque, MAC, Elizabeth Arden, Mary Kay, etc for free. Who knew that cancer came with these kinds of perks! There was also a man who brought several wigs and hats. Some women at the workshop were already wearing wigs….it was interesting. I still don’t think a wig is for me. So far I’ve felt comfortable with my new look. I feel awkward when people don’t know I have cancer so wearing a wig would be uncomfortable for me.

I can’t remember if I mentioned that I’m going to be getting a Port-a-Cath on May 18th. It’s a medical device that will be implanted under the skin some where around my collar bone. Because the chemo I get is all done through intravenous, the Port-a-Cath will be used to draw blood and receive chemo so the veins in my arm aren’t over taxed. (On the 5th chemo treatment, I will be given Herceptin which will continue every 3 weeks for a year.)

You’re up to date now on this continuing story.

me

Virus

Andrew never gets sick but since I had my chemo treatment he’s had the stomach flu and a cold. I managed to avoid the stomach flu but not the cold. Seeing as I’m a bit paranoid about getting sick, I took Andrew to a medical clinic on Saturday morning. The doctor confirmed that Andrew has a virus, as do I. Other than monitoring my temperature, which I do several times a day, there’s nothing we can do.

It’s hard to believe that it will be 2 weeks tomorrow since my first chemo treatment. The next one is scheduled for next Friday (May 5th). I’ll be a quarter of the way through which is very exciting for me.

Today, Barb, the woman who is going to help me around the house, is coming for a few hours this afternoon. Part of me wants to clean the house before she gets here and the other part of me wants to leave it because if I don’t, she’ll have nothing to do. I’ve never had anyone come in and clean my house so this is a bit awkward for me.

Not much else to report today.

me

Here We Glow Again

This morning I’ll be going to the hospital to have another test done. It’s called a “Wall Motion Study” which may sound like a test that should be done in the Wind Tunnel at Western but it’s actually a heart test. I did a search on the internet to get more information. Here’s what I found…

It’s really called a gated nuclear angiogram which is a technique using radioisotopes to measure the pump function of the heart. “The red blood cells are tagged with a radioactive material (here we glow again). As the red blood cells circulate through the heart, counts of their radioactivity are obtained with a gamma camera. A computer constructs moving pictures of the heart by timing and counting radioactivity throughout the contraction and relaxation phases of the heart’s cardiac cycle.”

Some of the drugs I will be taking can cause heart problems in a small percentage of people. Today’s test will provide a baseline that will be used to compare future tests as I go through more rounds of chemotherapy.

I’d better get ready to go.

me

P.S. Donna – I will try to include more pictures in future entries…just for you.

Pink Sticks

When the pink stick initiative with the NHL players was announced supporting breast cancer research, I decided to e-mail the organizers. I figured that it would be nice for them to hear that their work with this initiative was appreciated by those fighting the battle. This is so unlike me but, I thought it might brighten their day. I wasn’t expecting to get a response back but I have exchanged a few e-mails now. Today I received my very own pink hockey stick. The organizers were kind enough to send me the stick used by Scott Hartnell of the Nashville Predators. We are also expecting a second pink stick to arrive shortly that Steve bid on in the auction. Steve bought Dennis Wideman’s stick. Seeing as Dennis Wideman was a former London Knight, Steve thought it was a good choice.

Not sure where we’re going to put them yet but I’m sure we’ll figure it out.

me

Nap

Not much to report today. For the most part I’m just figuring out what my limitations are while I’m on chemo. They say that nausea can usually hit in the first 2-3 days after chemo but with all the medication I was on, I seem to have avoided that stage. I was told that fatigue usually sets in 4-5 days after treatment…I have found this to be true. I laid down for a nap yesterday morning at 9:30am and didn’t wake up until noon! Until now, I’ve never been able to nap during the day so I was shocked to find out I had slept for 2 ½ hours.

Well, Steve has left to take the boys to school and I feel another nap coming on so I’ll sign off for now.

Take care,

me

I Spoke Too Soon...

I had a feeling when I wrote that everyone was fine, it would come back to haunt me. Sean awoke at 12:45am throwing up. I’m so used to going into Mom-mode when the kids get sick that I found it hard to step back and let Steve take care of everything. The best I could do was sit across the hall from Sean’s room and tell him that everything was going to be alright while he held the bucket on his lap. Sean noticed some things that the Easter Bunny had left in his room so that cheered him up.

So here are the pictures. Before…the Mohawk…After.

Enjoy,

me