A pic from the CBCN conference

Beth, Jill and Diane at the Body, Mind, Spirit conference (Arabian night)

Pink Wig dance

Check out Julie's video here http://www.youtube.com/watch?v=lP29sx87LMM


Her blog is: http://julieolsensjourney.blogspot.com

Body Mind Spirit - National Conference for Young Women Living with Breast Cancer

I attended the Body Mind Spirit conference in Toronto this past weekend. What an amazing experience. I don't know what the best part was - being with so many women who have been through what I have, the speakers and workshop topics, or the entertainment (see links below). I attended workshops on Art Therapy, Meditation, Naturopathy, Ayurvedics, and more.


Jonna's Body - a comedy (!) about breast cancer

Bif Naked - I had no idea Bif Naked was such an amazing speaker... I didn't really know anything about her.

Pink Boy

My husband and son (Zach) visited the Pink Ribbon Riders booth at Hay Days last weekend. Zach tried on a shirt to buy for me. They thought he was so cute they took this pic and posted it on their website. We do hope to do one of their snowmobile rides this winter... check it out: www.pinkribbonriders.com

First chemo was a year ago

Just thinking about it still gives me the heebie jeebies, which is actually defined as 'a feeling of anxiety, apprehension, depression or illness'... pretty much describes it. It was my husband who noticed the date, since he was invited out to a dinner that he had to say no to last year. He's going this year.

We've all come a long way in a year. I am so thankful to be feeling as 'normal' as I am. Life is back to a good routine. I miss my support group though. I don't see them much now that I'm back at work. We'll have to figure something out...

Bone health after breast cancer

I attended a session on Bone Health - informative for all women. It was done by a physiotherapist, a nutritionist and a pharmacist. It was on how to decrease your chances of developing Osteoporosis (a disease that makes bones thin and weak, meaning you are more susceptible to fractures).

We are done building our bone strength around age 18. We maintain it during our 20's, and start to slowly lose it in our mid-30's. Women start to lose it rapidly at menopause because of the drop in estrogen levels. There are lots of major and minor risk factors - but the one that stands out for cancer survivors is early menopause (before age 45, typically caused by chemo).

What to do? Make sure you are getting enough Calcium, Vitamin D and exercise. The amount varies depending on your age, but a post-menopausal woman should get 1500mg Calcium and 1000 IU's of Vitamin D each day.

Your body makes vitamin D when you are in the sun, but apparently you need your arms and legs exposed, no sunblock, for 5-20 minutes, between the hours of 10 and 2. Not many of us Canadians can do that year round. Most people need to take a mulit-vitamin or supplement to get enough.

The physiotherapist was there to tell us that physical activity helps to keep bones strong - both weight-bearing exercises like walking and running, and resistance/strength training like free weights and push-ups.

They didn't recommend any specific multi-vitamin, just had us all bring whatever we take so we could see how much was in it and think about how much we're getting in our food. My multi-vitamin has 400mg of calcium and 200 IU of Vitamin D. I drink 2 glasses of milk a day, but that still doesn't get me there. I'm going to look for a different multi-vitamin or take some extra calcium and vitamin D...

7+ Months post-chemo

I had my 6 month follow-up today and all is good. My bloodwork is 100% back to normal (finally!!) My oncologist will continue to monitor me, he'll see me in 6 months and do bloodwork again. He ordered a bone density scan (I have never had one yet). I'll have annual mammograms. And just keep my fingers crossed.

Here's my hair - I'm going to keep it this short through the summer and then we'll see. This is my natural hair color, but I'll probably get some highlights soon. It sure is easy!

As for side effects, I still have some numb toes, but not all 10 anymore. They do drive me crazy some days. It still hurts where the original surgery was, but I've stretched enough that my fingers don't fall asleep or get numb anymore. My taste buds are pretty normal, although coffee has never been quite right again. I've pretty much given up on it and mostly drink green tea now.

My eyebrows didn't come back the way they used to be. They're very light and patchy, but that's what eyebrow pencils are for!

My port incision is healed, but still is sore to touch. It took a long time for the last little stitch to come out.

I still have an ache in my lower back and my right hip. It's faded, or I've just gotten used to it. But if I think about it, it's there.

I've been back to work 7 weeks now, full time for the last 3 weeks. I'm tired in the evenings (so are most working people!) It's manageable. I'm enjoying being back, its gone a long way to making me feel 'normal'.

That's all for now. Take care...
Beth

3rd week back at work...

I worked 30 hours this week (6 hour days). Next week will be 7 hour days. I like being at work, I enjoy my job and I work with great people. My plan is to focus on keeping work in its place and not get too stressed about it... Yeah right... Like a lot of companies, it is tough times, and people are asked to cut costs and work smarter. In the 3 weeks I've been back, we are reducing our office space (downsizing the cubicles), and we've done some layoffs (people I respect and know well). I'm glad I'm back if I can help make this easier for anyone, but it sure makes it tough to 'leave work at work'. My advice to others on returning to work is to be sure you have a strategy for handling the stress. For me it is walking/running (outside) and loud music while I fall asleep (blocks out the thoughts running through my head). Headphones.

I'm not going to blog about work, this is my cancer blog. I think I'm almost done, I want the cancer story to come to an end. My oncologist bumped this month's appointment to next month. I want to hear that my blood work is back to normal and have him confirm the mammogram was clean. I want to tell you the follow-up plan, and then be done.

Take care everyone.
Beth

2nd Week Back at Work

It was a good week, I worked 25 hours over 5 days. I am enjoying being back in the middle of things, it makes me feel much more normal. I am still walking most days, and even ran a few km last night (avoiding the slushy puddles). It felt good.

Kids are rebelling in their own special little ways (they are used to me being home, even if they are teenagers now). Mornings are not so wonderful, Zach missed an entire morning of school (just didn't wake up until noon - not his fault you know). He may be one of those guys that needs 2 or 3 alarm clocks in his room...

Have a great weekend!

Goodbye Renee

Rest in Peace, Renee

obit

Working and Sleeping

I'm enjoying being back at work. I feel like I'm playing dress-up everyday (business casual office). And all these friendly people around (I'm so used to being alone on my couch, in my sweats or jammies). The thing is though, after 4 hours each day, I need a nap in the afternoon, and I'm still in bed by 8:30pm. Asleep in a second. I'm not getting up any earlier than I was - I still drive Carter to school and then head on to work instead of returning home, but wow am I tired. Can't keep my eyes open.

Yesterday evening I drove Carter to the outdoor skating rink, which is only a couple of blocks away. I made 2 wrong turns. He was looking at me funny. He asked me if I was okay to drive, if I was on any pain medication that could affect my driving. He's 12. I said no, not on anything, this is what being tired does to my brain. Hard to focus on what I'm doing.

We'll see if I can stay up tonight (I have to, we watch "Survivor" !!)

Back to Work

I started back to work this week. I'm happy to be back. Tired in the evenings, but hopefully that will get better quickly.

My son left me a note yesterday saying 'your manogram is good'. I was quite suprised that they would leave the message with him, but they probably thought it was my husband, he has such a deep voice now. Excellent news, now I just want some good bloodwork next month and all is good.

Have a great day!

Some of my new friends

Here's a pic of some of my new friends. Six of us met in the summer as part of a 6-week support program, and have continued to meet weekly (usually 4 or 5 can make it each week). It is so great having each other just a phone call or meeting away. We can talk about anything, including our hair, our aches and pains, how we are dealing with our relationships, our kids, our plans to go back to work (or not). All of us had the same chemo, but different surgeries and radiation doses. Here you can see 3 post-chemo hairdo's and 1 wig (and our Tim Horton's coffees).

Mammogram (already!)

I went for my mammogram today. Hard to believe it's been a whole year since this mess started. I'm feeling confident I am fine, but it will be good to hear the results next week. Next week will also be a year since surgery, so it will be a good time to declare myself a 1 year survivor!

Side note - I recommend taking tylenol before the mammogram, it definitely helped!

First Haircut! 6 months post-chemo

Okay, there wasn't much to cut, but it's much neater now! And while you might think all of your hair grows in at the same time after chemo, it doesn't. It was getting long over my ears, and still just coming in at my bangs and the very back.

1 week until I start work...

A funny thing happened last week. I was feeling pretty good, I stopped to get groceries on my way out, chatted with the cashier, helped bag the groceries into my reusable bags, and just as I'm ready to pay she smiles and says 'do you get the seniors discount'? Really? I don't know what the cutoff is for the discount on Safeway's seniors day, but I'm pretty sure it's not 44. I know I don't look like a senior, even after a year of battling cancer treatments, but it still managed to get me down.

I'm off to the doctor today to get my note giving me permission to go back to work. Later this week I have my mammogram. How much is that going to hurt? Definitely taking tylenol first. It's already been a year since my diagnosis. Unbelievable.

Countdown to going back to work (< 4 weeks)

A busy week... I met some friends for lunch. We're wearing our beaded bracelets made to support our friend's mom when she was diagnosed with breast cancer (and now it shows support for me as well!)

After lunch, I had my followup with the radiation oncologist, who says all looks good. He did say I need to get a compression sleeve to wear if I'm flying, since there is a life long risk of developing lymphedema in my right arm, where all the lymph nodes were removed.

I went for lunch with my support group. We meet weekly, either coffee or lunch, or sometimes at someone's house. This will be hard to fit in once I'm back to work, but will definitely be a priority.

I went for a walk with Nancy, who is my running partner and is training for a half marathon here this month (in the snow). We ran it together a few years ago. I miss running, but I'm just not ready yet. I've tried a couple of times, but am sticking to walking for now.

I talked to Jan, my friend in Vancouver who calls every week or two to see how I'm doing. In addition to her regular job, she has a dog walking business, so she is usually walking through some forest or along a beach when she calls. She always asks me to come out to visit, hopefully I'll get out there in the summer with the kids (we missed our planned BC trip last year which was to include biking down the mountains at Whistler - them, not me).

I watched a webinar on 'Healthy Lifestyle Choices for Breast Cancer Survivors'. The main message is to eat low fat, maintain a healthy body weight, and exercise. Unfortunately, all the studies were on postmenopausal women. There were also discussions on alcohol, soy, and flax, which can affect estrogen sensitive cancers (mine is not). Vitamin D was the last thing discussed, the recommended range to take is 200 to 1000 IU. It's disappointing not to hear that there is something significant I can do to reduce the chance of recurrence. The one change I have made is drinking green tea everyday. Green tea is shown to lower the risk of cancer in general, not necessarily the recurrence of breast cancer. It is a healthy drink since it's a rich source of antioxidants.

I'm thankful again for what a strong support group I have - so many people that check in on me or I just know are there when I need them.

5 months post-chemo

And almost 3 months post radiation (followup with radiation oncologist tomorrow). I'm definitely feeling stronger and thinking more clearly. My new exercises from the physiotherapist have really helped my right arm. My fingers are no longer going to sleep so much.

I'm planning for starting back to work March 1st. I think I will feel much more normal once I'm back at work.

And the 5 month hair update...

Chemo Brain (Brain Fog)

I attended a seminar on chemo brain, which the speaker (Dr. Heather Palmer) prefers to call brain fog, since they're not sure if its caused by the chemo, or the cancer, or the drugs you take for the side effects of chemo, or what. Based on different studies she showed us, she estimates it to affect over 50% of cancer patients who undergo chemotherapy, and can last up to 5 years, but does tend to get better over time.

The tips here are for anyone, since 'brain fog' can be caused by other life events as well (including aging).

It was interesting that they say fatigue (which is very common among people finished treatment) can be partly caused by the brain working so hard on normal daily tasks.

The symptoms include:
- memory problems
- verbal/written skills - not using the right words
- attention & concentration (could be fatigue causing this)
- problems with executive functions are very typical for cancer patients - this includes the higher thinking skills incluing planning, mental calculations, organizing, multi-tasking. Oh oh!
- motor function & co-ordination (could be the numb feet or fingers causing some of this)
- spatial skills - missing the table when putting a cup down, and bumping into things. Interesting for me, because I've noticed a slight problem with depth perception when walking down stairs.

Most of her talk focused on a program she uses, called Maximum Capacity Approach .

Here are the tips I picked up:
First, document your mistakes (and why, what time, what could have prevented it). Review your list and look for patterns. Do you just forget everything your husband says? Are you bumping into things more in the evenings?

When you hear a name or something you want to remember, do something that pushes it deeper into memory (make a rhyme or put it into a sentence)

Keep lists, use daily planners.

Use your existing routines & habits - for example, always put your keys in the same place; if you need to remember to take medicine in the morning and you're a coffee drinker, put the meds in your coffee cup.

Use external self talk - "I'm going downstairs to get..."

Try to remain in a 'present minded' state vs absent-minded. Always know what you're doing and why, don't let yourself get easily distracted. The tips for this were to stop and take a second when you finish something before you start something else - example was you were sitting doing something, the phone rings, and when you finish the call, don't just wander off and do something else, stop and think (and hopefully remember you had been sitting doing something when the phone rang). Also, make sure you are staying on task - example was you went to check your e-mail and now you find you are on the internet reading about polar bears.

Minimize unnecessary multi-tasking.

Slow down a notch.

Stay mentally & physically active.

It was an interesting evening, always good to be around people with similar things going on. Personally, I've experienced most of the above symptoms, but I've felt much 'clearer' over the last couple of weeks - the fog is beginning to lift.

Keeping Busy

The joys of insurance companies - we had stayed at the lake between Christmas and New Year's, and when we got back, I had a message from the insurance company to call them. I called back and left a message, and we played phone tag for a week. When I finally reached her, she said they required a doctor's note or they would cut off my disability. Kind of a rude way to put it, but I said fine, I had one, and would get my husband to fax it the next day. Well three days later I get a letter in the mail saying they had cut it off, and I would need to launch an appeal to get it reinstated. When I phoned back, she said she had sent the letter before we talked, since she hadn't heard from me. Really? I had left her messages for a week trying to get in touch with her. Anyway, she said it would take a couple of weeks to review the fax I had sent in (it was 2 sentences from my doctor saying he recommended me staying off until at least March when he sees me again).

Then this week, I called our HR department to tell them I'm ready to come back March 1st. They told me I would need a note from the doctor saying I was 'released' to go back to work. Really? They couldn't just take my word for it? The doctor also has to provide my 'gradual back to work' plan. Since I'm quite sure my doctor will ask me what kind of back to work plan I think would work for me, I asked the HR person what a typical back to work plan is like, so I'm prepared. She recommended gradually increasing from a 4 hour work day 3x/week up to full time, over 4 to 6 weeks.

Luckily (?) I still have lots of doctors appointments, so easy enough to get the proper notes from them.

I started physio on my arm again last week, because of the aches I get down my arm and the numbness that comes intermittently in a couple of my fingers. It's my 'mouse' arm, and my job is on a computer most of the day.


I had my hearing checked, and I have a bit of hearing loss in my left ear, but very minor. The ear specialist asked me if the chemo I was on can affect hearing, and I said I didn't know, I thought he was supposed to know that.

Today is lunch with my support group celebrating one of them getting her port out. Finally. She finished chemo 2 weeks before me.

Moving Forward after Breast Cancer

I attended a really good session last week put on by the local Breast Cancer Centre of Hope, led by a nurse and a psychologist. One of the best things is just being with other people at the same stage as you - finished treatment, still feeling the side effects, wondering about getting back to a 'normal' life.

I'll summarize it here, from my point of view (I'm not mentioning tamoxifen or other things that don't apply to me):

They put together the program a couple of years ago based on a need - women wondering what happens now that treatment is done, their support network backs away, and yet they are not recovering as quickly as they expected to. They offer it monthly here in Winnipeg, I'm sure other places offer something similar, or if you want to start something, I can give you the contact information for the two ladies that run the program here.



1. Physical Effects left behind include fatigue, sleep issues, chemo brain, treatment-induced menopause, numbness/pain from surgery, neuropathy from taxotere, aches and pains (glucosamine was recommended, I may have to try that). They encouraged us to talk to our doctors about sleep aides and/or anti-anxiety meds if needed for 6 months to a year.

2. Psychological/Emotional Needs - this was an interesting topic. In addition to talking about sadness, depression, anxiety, it covered a few things I hadn't given much thought to. Some people believe that there has to be a big lesson in this experience (what did you learn from it, what was the good in it). The two ladies leading the session have a firm belief that there does not have to be a big lesson here, that it did not a happen for a 'reason'. Many of my on-line buddies will agree that we have a hard time listening to people who are 'thankful' for the experience of breast cancer, or how it has changed their lives. My personal thought on it is that it was awful, I don't wish it on anyone, but I do recognize the 'silver lining' - the strong new friendships I have, the time I was able to spend with my kids.

3. Living with Hope and Uncertainty - this was a discussion on learning to trust your body again, and accepting the fear of recurrence. How to stay sane during times of increased anxiety (tests, doctor visits, etc). Things to watch for, and that you should see a doctor at least every 6 months for the next 5 years (whether its your oncologist, surgeon, family doctor, etc). Right now my oncologist still has me on a 3-month follow up. It was pointed out that there is no testing done to see if the cancer is returning (other than an annual mammogram). It's really up to us to know our own bodies.

4. Getting Back to Work - make sure you are ready - it requires both physical and emotional energy. Typically you need a minimum of 4-6 months after treatment is over, and sometimes up to a year. They strongly recommend a gradual return to work to make sure you can manage it. I am aiming to go back in March, which will be 4 months since treatment ended. I've really felt more energy as well as an ability to think more clearly in the last 2 weeks, which is why I can now think about going back to work without feeling completely overwhelmed.

I hope others have a session like this available. Ask for it. Here is a link to a site about 'Life After Treatment':
http://www.cancer.gov/cancertopics/life-after-treatment/allpages

The Eyes are Good...

I had my eyes checked today because they seem worse since chemo (all those days of watery eyes). Only a very slight change from a year ago, so no glasses yet. Probably in the next year or two I'll be right into bi-focals (since both my near and far sightedness is a bit off).

I am still having a bit of a problem with depth perception, but he suggested that is likely from fatigue, which makes sense to me.

Next week is my hearing test, as well as physio for my arm.

Summary of the chemo...

This is a summary of the chemo treatment I survived. I have never experienced anything like this. Radiation, and even surgery, was a breeze in comparison:

6 treatments, one every 21 days:

• for each treatment, Brad and I were there 2.5 to 4 hours (always had the bloodwork and meeting with the doctor a day or 2 before treatment)
  
• #2 was delayed due to low white blood counts. I also had 1 or 2 day delays due to holidays or scheduling. Overall it took 4 months, May 7 to August 29th (not including recovery from the last one).
  
• it took 2-3 hours for each treatment (administered through an IV into my port-a-cath).

The first 3 treatments were a mixture of 3 drugs (Fluorouracil (5FU), Epirubicin (Red Devil), Cyclophosphamide) and the next 3 treatments were Docetaxol (taxotere). FEC-D. Seems to be the current standard chemo for breast cancer patients in Canada.

The first 3 treatments kicked in within a couple of hours - nauseau and fatigue. The second 3 treatments kicked in after 2-3 days - bone pain.

Because my white blood counts didn't come back up quickly enough, I was given neupogen. 5 self-administered shots after each chemo. Not fun.

My red blood counts dropped during the taxotere and I became anemic. That was monitored, but eventually came up on its own. No blood transfusion required.

The worst side effects for me included nausea (never actually threw up), self-administered neupogen shots due to low white counts, bone pain, sleeplessness (lots of laying awake at night), sense of smell - I could barely inhale, everything offended me (in hindsight I realize it must have been the chemo coming out of my pores). Also the change in tastes - I missed coffee, red wine, and some regular things like caesar salad that just didn't taste right. I didn't feel like myself, I always felt sick, and low energy. Chemo also made me more sensitive to pain - my port and my scar from surgery would ache more. Also, no surprise, I was getting a lot of anxiety the couple of days before chemo (ativan/lorazepam helped with that).There were times I really didn't think I could go through with the next treatment.

The side effects that weren't too bad included the watery eyes and the hair loss. Earrings are a must, to go with the scarves. As we got into winter, it was great to have a hat with a matching scarf - made me feel less conspicuous.

The side effects I dreaded but haven't had, included nerve pain in the feet, infections/hospitalization due to low blood counts, weight gain, worse nausea, extreme fatigue.

♥ ♥ ♥ ♥ ♥ ♥
The things that got me through it all - #1 is the support from my family and friends. My breast cancer support group (6 of us close in age and treatment phase - we can talk about anything, we understand each other), the blogging community, my doctors and nurses, the ability to sleep a lot, earrings, and my eyebrow pencil. ♥ ♥ ♥ ♥ ♥ ♥

(with and without eyebrows):

The port-a-cath was definitely better than having veins poked each time, but I think I might have been better off with the PICC (catheter in the upper arm). Hard to say, disadvantages to each I guess. PICC would have come out the last day of chemo, the port came out about 2 months after.

I miss running and having a regular exercise routine, but walking has been good, and I can look forward to running again soon enough.

Six weeks post-chemo I noticed some new side effects - numb toes. It's like they are asleep. no pain, just tingly like they are waking up (but they don't). Otherwise, my strength is coming back, I can walk at a pretty good pace, but those muscle aches are still faintly there (down arms and legs).

Two months post-chemo. My muscle aches (all down my legs and arms) are pretty much gone. I can put my hand on my thigh and not feel pain. The aches peaked at about 4-5 weeks after the last chemo. I just kept walking (but not too much) and drinking lots of fluids.

Four months post-chemo. Muscle aches are all gone. Just the tingly toes left (and the sore arm from surgery). Enough hair to not cover my head around friends. During radiation, I was out every day to get treatment, so I was walking and drinking my water. After that, I sort of faded. The weather got really cold, and I didn't have to go out, so my walking slowed down. My energy went down as well. Last week I focused on walking and drinking water (and green tea) and I am already feeling stronger.

My biggest wish is that something is found that PREVENTS cancer, and no one ever has to go through these treatments.

I survived.

XOXOXOXO

Beth

Hair - 4 months post chemo

Happy New Year to everyone! I am now 4 months post-chemo, 2 months post-radiation. Gradually regaining my energy, feeling pretty good overall. Toes still tingly, right arm tires easily and the fingers go numb. Quite sore under my arm. Minor complaints compared with what I've been through.

My hair is coming in, my eyelashes are good, my eyebrows are still a bit patchy but that's what eyebrow pencils are for!