Thursday, January 28, 2010
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.
Wednesday, January 27, 2010
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.
Tuesday, January 19, 2010
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':
Thursday, January 14, 2010
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.
Thursday, January 7, 2010
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:
- 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. ♥ ♥ ♥ ♥ ♥ ♥
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.