Mind Your Memory

Today I was at the Cross Cross Institute at the Mind Your Memory course or session. The course is to help understand and cope with what we call 'chemo brain'. Chemo brain is used to describe forgetfulness, absentmindedness, and inability to focus when performing daily tasks. Simple things like forgetting common words, remembering simple details like where you parked, trouble concentrating like having to read pages of a book over and over again, and so on. It seems to be worst with short-term memory.

So the question is ... do you have to have chemotherapy to have chemo brain?

The facilitators said it is difficult to say because there are so many causes of these symptoms ... such as .... fatigue, depression, grief, pain, stress, anxiety, worrying, medication, hormonal changes, and so on.

They offered some coping strategies that can help make this easier to deal with ... like making lists, use a journal or organizer, etc. The nutritionist stressed that proper diet helps with improving brain function and exercise helps with fatigue.

For myself, my short-term memory is terrible, I have to write everything down or it is gone. However, I am taking a college course and did really well on the mid-term exam and have no trouble doing the weekly assignments. So even though you feel like you cannot remember anything at all, you can. Granted, I am not working and have a lot of time to spend on it.

My motivation came from a story where after being diagnosed with cancer and getting chemo, a lady in here 30's when back to school and became a doctor. I figured if she could become a doctor, I should be able to take some college courses.

Just got up from a snooze ...

What a difference a nap makes ...

This week I've napped for about an hour each afternoon. I sure have enjoyed it but it kind of interferes with the night's sleep. I end up dreaming and wake up not well rested.

This morning I had my CT scan at the Cross. They make you drink this fluid that I say .... lights you up from the inside out. I think it's like 8 cups of liquid, you have to drink, in 45 minutes. Yuk! The waiting rooms were busy as ever. One lady said to me ... you have to drink all that? 5 minutes later, she was given the same amount. We laughed about it. One other guy said ... if it was beer, he would have no trouble drinking it. It is nice that we can joke about it.

Flushing the Central Line (CVC)

Once a week the CVC I have needs to be flushed with Heparin. Thou I was trained to do this, I have my sister who is an nurse ... take care of this for me. I have a prescription for the dressing, needles, heparin, syringes, medical tape, etc .... that I get from the pharmacy. Besides, the flushing, maintenance on the CVC is quite simple and I've really gotten used to it.

I get this flushed after chemo and chemo is usually on a Tuesday or Wednesday (3-week rotation). That is why today is flush day.

This afternoon, I'm at the Cross Cancer for the last of the Poetry Support Group meeting. I will miss the group meetings.

Tonight I'm having supper with a breast cancer survivor that went through treatment the same time I did back in 2000. She is cancer free and doing real well. We have kept contact by having suppers together every few months.

Tomorrow, I have a CT scan to see how the tumors are doing. I've had one scan since my chemo started in August and the tumors have shrunk a bit. I'm hoping for the same results with this scan. Below I've included a bit of a discription of a CT scan ... given to me by the Cross Cancer.

How is a Computed Tomogram (CT) scan done?

You lie on a padded table which slides into the opening of the CT machine. The technologies will ask you to hold your breath during scans to avoid blurring the images. You may hear a noise during each scan while the x-ray machine is taking your pictures.

The average CT scan takes about 20 minutes, however, preparation time can vary from 30 minutes to 1 hour before the actual scan.

Prior to the scan, the radiologist may request your consent for an injection of a colourless contrast medium (x-ray dye) to show up certain parts of your body.

99 Balloons

If anyone watched Oprah today, you would have seen this video off you-tube .... 99 Balloons. It is worth watching.

Mind your memory and energize

Today I registered for a couple of classes or courses at the Cross Cancer. One is called Mind Your Memory and the other is Energize.

Mind Your Memory offers information on how cancer and cancer treatments may affect memory, proper nutrition for good memory and how to maximize memory.

Energize offers information on cancer-related fatigue, proper nutrition and the importance of exercise in helping to manage fatigue.

The memory is terrible after a cancer diagnosis. My thoughts are that it is the stress of the information that causes the poor memory. I used to blame it on chemo but my opinion has changed. I still enjoy blaming it on the chemo because it is an easy out ... 'chemo brain'.

The fatigue is caused by the chemo. It just takes the energy out of your body, your thoughts, and your enthusiasm. I just don't really want to do much .... especially the second week after a treatment. I've mentioned it before, that is when the fatigue is the worst.

Nail changes during chemo

One of the side effects to chemo is that the finger nails and toe nails lift, discolor and/or fall off. The website breastcancer.org offers a great description of what happens.

My experience so far has been a bit of discoloration, some ridges have formed and a slight lifting on one of my fingers. I do find they are brittle and so I keep them trimmed real short.

I guess my only concern is to keep them real clean so bacteria doesn't grow where they are lifting. This will be something I'll ask the oncologist at the next visit.

Canadian Cancer Society Peer Support

Last week I was struggling mentally and felt I needed a bit more support. The Canadian Cancer Society Peer Support is something I had considered for quite some time. When I contacted them I was sure what I needed help with but I knew that just talking to someone going through the same thing I was going through would make me feel better. Just yesterday I spoke with a lady who was born in the late 1970's and was diagnosed in 2005(???) with metastatic breast cancer with cancer in her bones and liver. Obviously she is quite young. She has had periods (months) of chemo and periods (months) of no chemo. Her spirits are high. We chatted about some of the side effects of long-term chemo ... and how she kept a positive attitude. I felt like I wasn't the only one going through this. She said she'd make contact with me on a regular basis.

My hopes is to become a peer support person someday .... once I get a bit stronger mentally. I know how lonely it can be ... because unless you talk with someone who has gone through this, it just doesn't work.

This word .... hope

I haven't added much to the blog for a week or so because I've been feeling a bit down and out. The effects of the chemo drugs puts me into some mood swings that challenge me. The second week after a chemo treatment is when I start thinking about my illness .... the seriousness of my illness ... death and dying. Coming off the drugs puts you in a negative mood that lasts a few days. I know it comes and goes and I just need to work through it.

Prior to this treatment, the research nurse asked me to fill out a questionnaire which included questions about my quality of life, treatment, etc. One of the questions that really stuck with me was whether I and/or my family have accepted my illness. I answered the questions with a 3 out of 5 on each but I wasn't really sure. For starters ... do I accept the fact that I may die at any time? I had a scheduled visit with my psychologist at the Cross Cancer and discussed this with her. I asked her, how do I make sure I am aware of the fact that I may die any time? She said something like, you are on a journey and how get to the end is up to you. Some people believe that they can beat this disease. They believe it till the minute they die ... it is called 'hope'. Statistics show that the odds are against us but if we choose to deny the facts and live full of hope, that is O.K. too because as long as we have a good quality of life during the journey, what does it really matter. Wow that was a light bulb moment.

We then discussed how when you tell someone you have stage 4 cancer that is not curable and they refuse to accept it ... how does one deal with that. Well she said that you can't make someone accept something they don't want to. There is no use beating your head against the wall trying to convince them because it won't happen. She said to let them think what they like and just know that they are not a source of support to you. She all took some of the pressure off my by saying, not everyone needs to know everything. It is O.K. to just say ... I'm doing fine.

I thoroughly enjoy visiting the psychologist because even thought I have no idea what we are going to talk about, I always end up coming out feeling better.

I spent a lot of the week thinking about dieing. It has been 8 years since I was first diagnosed and I have already spent a lot of time thinking about dieing but as this disease ... cancer .... brings you closer and closer to death, I seem to spend more and more time thinking about it.

Today is Sunday and I plan on spending time working on the course I take. It motivates me to focus on the future.

Central Venous Catheter

What is a central venous catheter?

A central venous catheter (CVC) is a narrow, hollow, silicone tube that is inserted through the skin into a vein in the neck. The tip of the catheter sits above the right upper chamber of the heart in the large vein. the outer end of the catheter is "tunneled" several centimeters under the skin and exits the skin on your chest.

The are where the CVC comes out of the skin is known as the "exit site". The part of the CVC that is outside the body may have 2 or 3 tubes or lumens that join together into one tube.

What is the purpose of the central venous catheter?

The CVC provides access to your bloodstream and can remain in place for long term use. The CVC can be used to administer chemotherapy, medications and other fluids, including blood. If necessary, the CVC can also be used to obtain blood samples.

I had a CVC inserted after my first chemo treatment because it took 5 attempts to get an IV in. My veins kept collapsing. I was apprehensive at first but the nurses encouraged me that it would be easier in the end and the maintenance is quite manageable. I have to agree on both counts.

The only issue I am having is that I am getting a bit of a rash from the dressing bandages (glue) but I think it is my own fault for not letting the area dry properly after using the chlorhexidine swabs (cleaning). The area needs to dry for at least 5 minutes before new dressing is applied. I was not doing that and got a bit of a rash or burn to the area. I've since been using different dressing and things are improving. I plan to back to the original dressing once things heal up.

Cycle 4

Today was cycle (chemo treatment) 4. The treatment took 3 3/4 hours. Fortunately I have my portable DVD player to occupy my time and mind. It was busy in the Daycare area because of the holiday Monday this past week.

As I look at the others in the treatment area ... most people are older and/or much older than me. Many in the 70's and 80's (I think), which surprises me because chemo is tough and I don't know where they get the courage to do it. As I look at the individuals who are getting chemo and the family and friends that come with them, I try and think about what is going through their minds. I can read on peoples faces that some struggle with the treatment and some have a sense of humor and handle it better. Some of the family that comes for support are children and grandchildren ... all trying to make things go a bit easier for their family members. How sad it is in the daycare area. I sometimes describe it as zombies coming in for treatment. People come in expressionless waiting to be called in for treatment and then the nurses take them away and poke their bodies with IVs and needles filled with these awful chemicals.

I must say it is hard to be a chemo patient but I feel for the nurses too.

Regardless, the treatment went well. I expect the week to go well also. The awful days are Monday and Tuesday of next week when my steroids run out. Until then, I am going to enjoy my time as best I can.

Chemo tomorrow ....

Today I went to the Cross Cancer to get my pre-chemo doctor's appointment and blood test. Everything looks good-to-go for chemo tomorrow. I asked if I could cut back on the Zofran to help with the constipation. They recommended I stay with the program and not cut back the drugs. I also talked to them about the excess eating that I am doing. One of the side effects of the steroids is uncontrollable eating. I gained 5 lbs in 3 weeks. I didn't experience this the first couple of cycles of chemo but this last one was crazy. Anyways, they had no real good suggestions except drink lots of water and each veggies and fruit instead of junk food.

I got a little brave and asked about my future and this cancer. The doctor says I will be on chemo for pretty well ever. If things are going real well, then I may go off for a short time for vacation. It is hard to listen to these words. How can I plan my life? I have this need to be productive and sitting at home waiting for each cycle to come and go is not exactly being productive to me. Not sure what I should be doing. I need to find other people who are going through this just like I am and have them tell me how they are coping. In fact that is exactly what I'm going to do now. I'm going to the Canadian Cancer Society and then to the support services and see if I can find someone who can help me with this.

When a friend has cancer ... at a loss for what to say or do? Here are some pointers

Friday I went to the Patient Support Group at the Cross Cancer .... we shared stories of some of the odd things people say and do when they find out you have cancer. An article from a November 1995 Chatelaine magazine written by Laurie Bildfell was presented. She offers ten pointers on what to say or do when a friend has cancer.

I'd like to share Laurie Bildfell's article.... hoping Chatelaine doesn't mind.

When a friend has cancer

At a loss for what to say or do? Here are some pointers

It's been two-and-a-half years since I was told at age 40 that I had cancer. It feels much longer. The experience has been an enriching, scary and sometimes painful roller-coaster ride in the dark. Sometimes, on the ride, I've been surprised at who was holding my hand, and who wasn't. Often, people withdraw, not because they can't cope or don't care, but because they don't know what to do and are afraid of doing the wrong thing. Based on my experience, here's a list of do's and don'ts:

1. Be there. Don't suddenly drop off the face of the Earth just because I have cancer. I'm easily pleased: a postcard, a two-dollar violet, a phone call. Don't procrastinate -- I need your friendship and support now.

2. Don't treat me differently. I am the same person. Some cells are running wild in my body, but I still like to laugh, go to movies, swim at the Y. Life goes on.

3. Please do ask me how I am. I may not always want to talk about my illness or my treatment, and I probably won't but if you don't even ask " How are you?" a central fact of my life suddenly becomes shuttered, forbidden and unacknowledged, a deep black hole that we tiptoe carefully around pretending it's not there.

4. Make a concrete gesture of support. I'm not good at asking for help, and the last thing I want to do is to blunder into accepting an offer that was never meant to go beyond words. If you see something you might be able to do, please suggest it. Cancer has abruptly turned my life upside down, and I often don't have the time or resources to figure out how I am going to manage my daily routine. If you're able to ferry my kids to Girl Guides along with your own, pick up a few groceries when you're headed my way, lend me a floppy hat or pretty scarf, or watch for the school bus when I have an appointment, please make the offer. It's hard to be asking all the time.

5. Listen to my family. My husband and kids are in this too. Sometimes kids have questions they may be afraid to ask at home. Answer them honestly, if you can't. If you think I need to know about what's worrying them and can fill me in without violating their confidence, I want to hear it. My husband is also carrying a load that's rarely acknowledged. If he needs to talk about his fears and pain, please listen.

6. Take my kids out. For my kids, the strain and uncertainty of having a sick parent is immense. After a while, home feels like a combination hospital ward/funeral parlor/loony bin. They need to have a bit of fun and remember what "normal" feels like. Please think about including them in your plans; maybe a trip to the apple orchard, cocoa and skating, or story time at the library.

7. Bring food. Regardless of their physical state, anyone diagnosed with cancer is emotionally and mentally shell shocked. For months, I had the attention span of a gnat. Even making a cup of tea was an organizational challenge. Without the casseroles and jars of spaghetti sauce friends had put in the freezer, there were days we would have been dining on peanut butter and crackers.

8. Be patient with my work habits. If you're a colleague or employer, please bear with me. Cancer patients sometimes fell as if we haven't got much time left, and we're spending it in waiting rooms. I know these endless appointments are inconvenient. I know I'm probably not working at peak capacity. But I'm doing the very best I can.

9. Listen to me. I get tired of being strong all the time. It's great to hear about your cousin in Montreal who had exactly the same cancer and is doing fine, but there are days when I really don't feel things are going well. I'd like to be able to talk about it. Please don't silence me with bouncy optimism. Every cancer patient knows we don't all make it. I need to be able to acknowledge that.

10. Do unto others. Perish the thought, but you may be there one day too. Think about how you would like to be treated. Then do it.

Laurie Bildfell, Chatelaine Magazine

A greeting card I received ...

I received a greeting card that included the following wording ...

I Prayed for You Today

I prayed for you today, gave thanks for your life, wished you the best, asked the heavens to bless you with good health and happiness ....

I prayed for you today. I sent you good thoughts, surrounded you with hope and faith and love. I asked for guardian angels to protect you and keep you safe from any harm and to blanket you with joy and contentment and peace and prosperity. I asked that you be guided with the wisdom to make choices to enhance your life and the awareness to make changes that are in your best interest. I wished for you a storehouse of opportunities, the ability to meet your goals, and the joy of your own approval and acceptance. I wished for you your heart's desire, every need met, every prayer answered. and every dream come true.

I prayed for you today. I asked that you be prepared for whatever life hands you or whatever you're going through. I asked that your spirit be strong and lead you and guide you each step of the way down every path you take. I asked the universe to confirm for you that you're someone very special. I asked the earth to be good to you, and I asked God to show you His perfect way.

I prayed for you today.

~ Donna Fargo

Coming off the chemo ...

Generally, the cycles are the same ... I know what to expect each day. Sunday and Monday of the second week are the worst of the cycle because you are coming off the chemo drugs and the steroid drugs. I call them 'pajama' days.

Tuesday I decided I was feeling better and should get out and about. My mind was stronger than my body. I went out to Walmart to looked around for about 20 minutes when I needed to sit down as my legs were feeling weak. I stopped for a coffee and muffin and walked around for another 20 minutes and decided it was time to head home. I made one more stop and knew it was time to head home. Obviously, I thought I was stronger than I was.

Wednesday morning brought a night of awful sleep caused by bad dreams and me stopping breathing during my sleep. The stop-breathing part is something I experience mostly when I'm coming off the chemo and steroids. It is a bit scary and is extremely disruptive to my sleep. I wake up feeling like I just ran a marathon and am catching my breath ... actually ... worse.

Wednesday, I woke up and went to my poetry support group. The problem is that the group meets in the afternoon and I went for a morning time. Obviously the bad sleep mixed me pretty good.

Eventually I did make it to the poetry support group in the afternoon even though I was feeling a bit weak. Once again, I am going to share some of the writing I did during the session ... please note, I'm not a poet ...

We were to write about .... I'm angry because or How to behave with the ill ... I chose to combine the two ... here goes .....

i'm angry...

i'm angry how people behave around the ill
they seem to come with an attitude of greatness
they come with medical advice and the latest greatest cancer cure
how dare they assume they have the answer
how dare they think just because they haven't been diagnosed with cancer they don't have it
don't they see that they may be just as vulnerable to this disease
the doctor that diagnosed me is no longer here.

The next poem is described as 'blues' poetry ....

workin blues

i've got the workin blues
wishin i was workin nine to five
wakin to the alarm clock ringin
dressin for the business cass
fightin traffic all the way there
makin the first coffee pot
and chattin with everyone there
puttin in a good days work
then bitchin about it to the dog
i've got the workin blues.