Coping after Cancer: ostrich, simple, find a way

2015.03.26
Thursday

The Ostrich's methods of putting their head in the sand to avoid danger is an urban myth. But, it presents a great metaphor of the feeling that I have had the last year to be able to cope with all of the pressures of just getting through each day.

 As the chemo fog starts to lift a little bit at a time I can look back and I realize that my coping and survival method was to just get by with my head in the sand. Everything that I do now after cancer takes a lot more energy, every decision I make depletes my finite source of energy. So, don't ask me so many questions you already know the answer to......

I am a changed person and I am not always liking the new me, but I am learning to live the new life.

I make a written or a mental list each day of the things that need to be done. The majority of times something gets in the way or makes ticking an item off the list impossible.  If this happens too many times, my energy is gone. Frustration sets in. My level of patience decreases and I become irritable and short-tempered. Not so fun for me or the people around me when I can't explain why something seemingly so easy to do is nearly impossible for me at those times.

I have been taking each day as it comes. Checking off one or two things on my list and adding about 30 each day. Seems insurmountable at times.

Building up my energy is done by being with family and friends in a new or different environment. Thankfully we had a vacation to Mauritius in February. It was the first time we could get away and just enjoy being with each other since our cancelled trip last year when I got the cancer. Our trip had its challenges though as the first 24 hours were spent at the Gatwick Hilton because the plane was delayed one day. I was fuming because 15th of February 2014 was when I felt the cancer on my neck and the week I got diagnosed and now one year later, Thomson is giving us a shorter vacation. We made the best of it. It is not easy to shake off those pissed off feelings, it took a couple of days and a few Rum and lemon juice drinks.

Frustrations:
Working out and eating well for 5 months and only losing 17 pounds.
Getting blood work done and supplements recommended from an alternative health place. (then being told by the GP that they could have done that for free)
Stressing about eating well
Not sleeping enough
Government authorities not understanding that I am getting things done as fast as I can.
Jumping through hoops to get my referral and translated medical reports submitted to get an appointment at the Royal Marsden for follow-up care.

Positives (now the fog is clearing):
I have submitted the annual report for my business and mostly cleared up any misunderstandings
Friends visiting from Sweden and getting to spend time with them and see new places in London
Discussion are in the works to sell my company in Sweden
I have a Fitbit Charge HR that helps me focus on eating and exercise
More friends are on the way to visit in the coming months (planning for their visit...)
Half-Century of living is coming up soon and I'm enjoying planning to celebrate that
Our cleaning ladies make my life a little easier (after 10 years of talking about getting some help)
Put an offer on a house
Peter doing the London to Paris Bike ride for Lymphoma Research
Eating more of a Mediterranean diet and trying to let go of the stress.
Intensive Spanish week coming up so the kids can practice their Spanish

MY FOCUS is to keep it simple (when I am not complicating things):

Sleep at least 7 hours a night
Eat well
Enjoy life
Drink more water
Hug the kids and hubby more than they want

Grateful to be alive. YES. Grateful for family. YES. Grateful for friends. YES. Grateful for living in London. YES. Grateful for sunny days. YES. Grateful for new adventures. YES. 

Just mulling over if I really want to get that 

tattoo.........BE BRAVE LOVE LIFE. 

Maybe it should be a present to myself? It can't possibly hurt more than Olga and the bone marrow test? How big should the writing be? Is writing with permanent marker the same thing?

NEW YEAR, same me, old friends, new experiences

2015.01.02, Friday

The New Year has started off with a bang.

We went to sleep after 1 am on New Year's Eve. I thought I could sleep late but of course I had planned some events for New Year's Day.

Yes, we were going to see the London New Year's Day Parade in town. Needless to say we were not the only ones with the same idea. After about an hour we had found a great spot on Regent Street to watch all the marching bands from America march by along with all the other cool oddities that marched by us. It was fun to see and the kids had a good time - they only admitted this after we were on our way home. It was quite cold but we braved the cold (by London standards) and got to enjoy a few hours of some great marching bands.

It brought back memories from my high school days and marching in New York City on St. Patrick's Day. I played the french horn. I think I marched maybe two years in a row. Great fun! Awesome that so many band from USA would travel to London to march.

We walked to a different train station to head home. I really do enjoy taking London public transportation. (I am thinking of starting a club at school for the moms and we explore London by taking the tube to different places......we have to have something to do when the kids are in school)

We arrived home and started to prepare for our dinner guest that evening.

Serendipity, chances, life's choices......

Patti and Bruce met here in London about 28 years ago when Patti and I were on the same Contiki tour with Bruce (he is from Australia). Patti and I were the only Americans on the 6-week tour by bus through more than 12 European Countries. There were about 12 South Africans, about 25 Kiwi's and Aussies, a bunch of Canadians, and a pair from Spain. We spent 45 days together and explored Europe in a fantastic way. It is the perfect love story and it is so cool that they are visiting London with their two kids where they first met.......

More than 28 years ago, my mom happened to meet Patti's mom at the mall the same day she was going to book the trip. Patti's mom thought it would be great if we went together. Her mom's last words yelled to her as we boarded the plane: "Don't fall in love with a foreigner"   That is exactly what she did.

It was fantastic to reminisce about that trip that spurred so many other things later on in life. Our kids and their kids loved hearing about all our partying on that trip. It is hard for them to think of us partying like we did.

Each choice we make and each friend we make has an effect on how our life turns out.

After that trip I visited the Scandinavian countries because two of the new friends from South Africa had been there and I couldn't afford to fly to South Africa right out of college. So instead, it was a Norway and Sweden adventure that ended up with me moving to Sweden two years after that. I eventually learned the language and moved to Stockholm after living in the North of Sweden for three years and then I met Peter not long after that and the rest is history.....

Patti, Bruce, Alli and Hayden arrived right on time bearing perfect gifts. I love my mug and the boys are looking forward to playing the bananagram game. We ate good food, drank some champagne and wine, laughed a lot and then we laughed some more. They went back to their hotel after midnight. What a great time we had. A great way to start the year.

Then Friday dawned bright and early and I needed to get up in time to make my 9 am gym appointment. I kicked my own ass during the workout. I am increasing my strength and cardio endurance. I see the improvement each time. While I was at the gym, Peter was out on his bike cycling past Richmond. I got some vegetable and bought the papers with an interesting headline.....We both got back to the house around 10:30 am and all the kids were still asleep.

I have all the luck......

Had enough time to get them up, feed them and get out the door heading to Richmond for the matinee performance of Snow White and the Seven Dwarfs, a British panto version. WOW. It was really an awesome experience and now we are all hooked on this cool British Christmas tradition. It exceeded our expectations. (google British christmas panto and read up on this most excellent of British traditions)

We walked around Richmond and found a place for dinner....(it was not in line with our expectations so I will not name the restaurant here.)

Need to sleep soon as I have made another appointment for the gym in the early morning before we go on new adventures.

I end with the quote on my mug from Patti:

It's a new day. I am alive. I am loved. I am thankful.

CHEMO BRAIN sucks.

2014.12.04

So, I have been sitting here for 15 minutes and all I wrote was this sentence.

The definition according to cancerresearchuk.org of CHEMO BRAIN or MCI (mild cognitive impairment) is when cognitive changes occur after chemotherapy. Cognitive is the way you process information or understand the world and how it works.

Excerpt from Cancer Research UK: Most people who have cognitive changes are able to do everyday things. But they may notice they aren’t able to do some things quite as well as before they had cancer. 

Symptoms can include (I HAVE ALL OF THESE)

• Memory loss – forgetting things that you normally remember
• Difficulty thinking of the right word for a particular object
• Difficulty following the flow of a conversation
• Trouble concentrating or focusing on one thing
• Difficulty doing more than one thing at a time (multi tasking)
• More difficulty doing things you used to do easily, such as adding up in your head
• Fatigue (tiredness and lack of energy)
• Confusion
• Mental fogginess

The changes are often mild and very subtle. But if you have them they can reduce your quality of life. Doctors now know that people with different types of cancer may have these problems. 

Tips for coping with chemo brain (I AM USING ALL OF THESE)

• Try to keep your life as simple as possible
• Avoid trying to do too many things at the same time
• Think about writing list about what you need to do, things you need to buy and where you left things
• Writing people's names down with a brief description to help you remember them may be helpful
• Repeating things back to people, for example, the names of people you meet for the first time can help
• When arranging to meet someone or organising an event it may be helpful to write the details down and repeat them back to someone
• Try to talk to people somewhere quiet with few distractions
• Many people find it useful to keep a calendar on your wall
• It may be helpful to write yourself notes and stick them up where you can see them to remind you to do things
• Try to follow a healthy diet, and get some exercise and plenty of rest - try to avoid becoming over tired
• Keeping your mind active may help -for example, doing crosswords, sudoku and puzzles

Those that knew me before cancer know that I was able to focus on a task for long hours and complete it. I could be counted on to follow through. I was amazing (even though I didn't know it) at multi-tasking and seemed to thrive on on having many balls in the air at the same time. (figuratively not literally - I am terrible at juggling). I started my own business and at the same time oversaw the building of a new house that I had designed. I kept track of appointments, remembered birthdays (didn't always send the card though), I was always prepared and even sometimes a step ahead for every event. I worked my butt off in everything I did.

The new me is going to take some getting used to. My attention span is like a goldfish. It doesn't bother me until I realize that my attention span is so short. I can't finish a task- especially if I can't start it. Just one of the many things that suck with Chemo Brain.

I have too many things on my mind and they are too many for my brain to handle. I become paralyzed with my actions and end up not being able to get anything done and only getting more frustrated. I make a list in my notebook to get these things out of my head. I try and do one or two of these things on the list. Frustration again because there are 10 new things to do every day.

So, here I am now 5 hours later, stopping and starting to get this blog post finished. 

Frustration comes and goes. This week it has been high as many things are happening at once. It is kind of overwhelming. I try and get myself out of my funk. Break the pattern. I am again so blessed to have friends here in London that I only met a few months ago that care. The girls are great listeners and have excellent ideas how to cope with all the varying consequences of having chemo brain. THANKS GIRLS.

If chemo brain sucks, then me getting in better physical shape is at the other end of the scale. Working out 3 times a week in the gym and then walking at least 3 miles a day means that my hip joints are sore just sometimes and not all the time like they were before. Exercise is keeping me sane. Thank goodness for that or I would already have been checked into the loony bin.

Recovery and living life after cancer always comes down to the support and encouragement of friends and family to get through it. I am truly blessed and grateful.

FRIENDS. GRATEFUL. CHEMO BRAIN SUCKS. FAMILY. RAINY LONDON. 

MAKE A LIST. START AND FINISH IT.

LOVED. BE BRAVE. LOVE LIFE.

New perspectives

2014 November 10

Monday

It has been a while since I shared what has been going on.

The new me is trying and doing a lot more things and trying to maintain that positive attitude on life.

I have changed the way that I eat. It is working. I don't eat processed foods anymore. It is vegetables, meats, fish, poultry and nuts. I am losing weight, slowly but surely. (I really would like that part to go faster....)

I am now working with my personal trainer, Ben who is patient and focused on getting me in shape. I am not as patient as him but I am very focused. I work out in the gym three times a week and I walk at least 4 miles every day. It the new me.

My views of the Thames during my walks.

It feels good to be in control of those two areas of my life - the eating and the exercise.

The positive attitude in life is easy in most respects because I see things and experience things differently. I have joked that it is the post chemo glow that gets the waiter to wink at me, the bus driver to joke with me, and the crepe store owner who waves to me every time I walk by his establishment. I am more aware of my surroundings and I interact with them more or maybe in a different way.

I think it is important to spend quality time with the family. As they are teenagers, they tend not to agree to the same extent but my challenge is to win them over.

So this past weekend I told them to be ready to go on a family outing at 8 am on Sunday morning. Leaving at 9 am was a major accomplishment. My thoughts were to see a little bit of the UK while we are living here. Our destination was Canterbury to see the Canterbury Cathedral, the Norman Castle and to eat lunch together. The kids found out where we were going as we drove out of London. We talked about Chaucer and his story Canterbury Tales on the way there.

Norman Castle ruins in Canterbury

Canterbury Cathedral

Inside of the Cathedral

My boys and Sophie on Whitstable Beach

It was a long day but really fun to see all these things. It gave us family time together. We even went to the beach at Whitstable and walked along the boardwalk. Sophie jumped in for a dip in that cold water. The drive back was just long enough.

I consider that day a success because they said that next time they wanted to be in on the planning. (and they even thanked me when we got home)

The new me is taking advantage of all opportunities to enjoy life. 

Mia and her family visited over fall break. It was awesome to have them here. The house seems empty now they are gone. The children impressed us when we had an afternoon tea at a really nice place and they used every one of their manners while eating and drinking from the fine china.

Last week, Jodi Picoult launched her latest book in the UK. Myself and a few of the other moms from school, who have formed a book club all went together. It was really exciting for me because my dad had Jodi as a student back in high school and they are still in touch. So, I finally got to meet her backstage after hearing so many fantastic things about her from my dad all these years. What an amazing experience to listen to her talking about her book and her life. Her latest book is called Leaving Time and I am halfway through.........(I highly recommend it)

Me and Jodi Picoult

The day after the book launch, I was invited to attend a film screening of Sweet Dreams which was sponsored by the Women for Women network. The organisation helps women in the countries where they need it most. It was a very inspirational evening.

I have more energy than I have had in a while. It feels good and I need to maintain that energy and start getting more things done but at a comfortable pace so I don't end up overdoing it. I also have to decide what to do with my hair.......

GRATEFUL for my family, my friends (both new and old), the sights I see in London, the new things I get to experience and the fact that my fight song, BRAVE- helps me during my gym workout so I can kick some butt and lose all of this body fat........


LOVED. FAMILY. FRIENDS. LONDON. AFTERNOON TEA. LEARNING NEW THINGS. KICKED CANCER'S BUTT.

Lyckligt ovetande (ignorance is bliss)

2014.06.18

WEDNESDAY

It might seem crazy what I'm 'bout to say

Sunshine she's here, you can take a break

I'm a hot air balloon that could go to space

With the air, like I don't care, baby, by the way

(Because I'm happy)

Clap along if you feel like a room without a roof

(Because I'm happy)

Clap along if you feel like happiness is the truth

(Because I'm happy)

Clap along if you know what happiness is to you

Annotate (Because I'm happy)

Clap along if you feel like that's what you wanna do

Here come bad news, talking this and that (Yeah!)

Well, give me all you got, don't hold it back (Yeah!)

Well, I should probably warn ya, I'll be just fine (Yeah!)

No offense to you, don’t waste your time, here's why...

(Because I'm happy)

Clap along if you feel like a room without a roof

(Because I'm happy)

Clap along if you feel like happiness is the truth

(Because I'm happy)

Clap along if you know what happiness is to you

Annotate (Because I'm happy)

Clap along if you feel like that's what you wanna do

Bring me down

Can't nothing bring me down

My level's too high to bring me down

Can't nothing bring me down, I said...

Bring me down

Can't nothing bring me down

My level's too high to bring me down

Can't nothing bring me down, I said...

(Because I'm happy)

Clap along if you feel like a room without a roof

(Because I'm happy)

Clap along if you feel like happiness is the truth

(Because I'm happy)

Clap along if you know what happiness is to you

Annotate (Because I'm happy)

Clap along if you feel like that's what you wanna do

My last 24 hours and the ignorance is bliss. The results are already determined but I don’t know them yet. Whatever happens tomorrow I will be OK. Right? YES.

It will be a defining moment when I get the news. Either reserved happiness with an enormous sense of relief or a crappy feeling with disbelief which will eventually turn into a new resolve. (although it could take a week or two)

Today Eric and I went back to the hospital for an appointment with the diabetes doctor Eva. She borrows his blood sugar meter and hooks it up to the computer to look at his results from the last two weeks.  She then makes some adjustments to his carb. calculations so that in effect he will be taking less insulin. She is a great doctor and has an excellent way of explaining things in an easy way.

Eric was hungry when we left the hospital so it was a forced stop at McDonalds. Getting tired of that place. Eric likes it though. So I must make sacrifices…

Heading into town, it was a perfect opportunity to stop in at SOUL, my favorite hair dressers and say hi. I missed them and it will be a while until I need a haircut again. I will have to fly back to Stockholm for that. HUGS.

Our next stop was my school to see what LEGO I had left there and which stuff I am leaving there for next year. It was great to see my colleagues and chat a bit with them.  HUGS.

We made our way home with the music blaring in the car. Eric talked during all of my favorite songs and asked me to be quiet during his songs….hmmmmmmm

Beatles “Let it Be” played and many other good songs, made the trip go quicker. It is interesting how fast upbeat music makes the car go faster……hmmmmmmmm

So, my hematology doctor knows the results but I don’t. I figure that whatever it is it will be OK. Of course bad news would suck but I will have to figure it out.

Tomorrow is the day. The results will be known by me. I am prepared for the good news. One bottle of champagne for the doctor and one for us tomorrow night. I told the doctor he would only get the bottle if it is good news.  J

Kids are on the trampoline and I guess I need to make some sort of dinner. It is good to keep busy as it makes the time go by faster.

ANXIOUS but CALM. HAPPY but SUBDUED. LOVED and GRATEFUL. FRIENDS and FAMILY. FINISH LINE. KICKING CANCER’S ASS.

Cancer Card

2014.05.12

Monday Morning and I am home with the two oldest. I am responsible to get them out of bed. I should be so lucky to only have to say "get out of bed" once. I should really record myself and just put it on repeat. They always make it to school on time but I am most often stressed a bit because I think they should be there earlier.

Right after I dropped them off, I head to the Täby lab to leave some blood in anticipation of tomorrow's doctor visit. I get there at 7:58 am and take a number - exasperated that there are more than 40 people already waiting. Then I remember what they said the last time I was there. I went up to one of the nurses and said "Last time I was here, they said that if you have cancer you should speak up, what should I do?"  She said "Come right this way and I will take care of you right away." Five minutes later I was finished and on my way out walking right past those 40 people. Ok, one advantage to having cancer is you get to skip the line. Yep, I played the cancer card.

Then I came home and thought that I would get some stuff done before heading over to the hospital. I ate a little breakfast and then watched a little tv. I was feeling sad.  I feel the adrenaline is subsiding as Eric is getting better.  This is making my emotions more raw. I have had them in check to get through all of this. Mentally drained and not enough sleep makes all of this harder.

My friends call all the time and check in on me and offer to help. It feels overwhelming to be loved and cared about so much but I am getting better at accepting help. I realize it is necessary.

I got to the hospital and went up to Eric's room just in time for our diabetes training. Today the session was about ketosacidosis. That is exactly what happened to Eric. I asked the doctor for his numbers from when he was checked into the emergency room. Holy crap. His numbers in every measurement were off the charts. I am so grateful we made it in time and that the excellent doctors and nurses in the emergency room and the intensive care unit were able to perform a miracle. I am grateful for my son.

It was an interesting session and it was followed by a meeting with the dietitian and then the doctor. It was a long day and I was tired by the end at 4 p.m. It was time for a quick nap in the hospital room before we headed over to my oldest son's school for their 10th grade personal project presentations. I was so proud of him. He got the highest grade for his work. Awesome. Good to have some good news.

Now home again and I need to mentally prepare and reflect on how it will be when Eric and Peter come home tomorrow. Eric is hungry all the time and all he talks about is food. He has lost so much weight and his body is calling out for nutrients. This is to be expected but it means we will be pros in no time on carb counting and calculating the dosage of insulin every time he eats.

YES, I still have cancer. I almost forget myself because I have been so focused on Eric getting better. But, I am hoping the doctor will say everything is ok for chemo #5 to happen on Wednesday.  I really have no tolerance levels for any other set backs or road blocks.

LOVED. GRATEFUL. KICKING ANYONE'S ASS at this point. FRIENDS. FAMILY. FANTASTIC DOCTORS AND NURSES.

May Bonfire.

2014.04.30

Tired this morning upon waking up. But managed to drag this old body out of the bed and out with the dog. Back inside after a short walk I got the kids up and took my pills and my shot.

Only my two oldest had school today so getting them off to school was not a problem.

I ate some breakfast and then the phone rang. It was Ulrica, the 2nd grade teacher from Campus Manilla where I work. I was on speakerphone and the whole class sang Happy Birthday to me and told me what time the grilling started today so I could come and visit them. Wow, tears came to my eyes during their thoughtful rendition of the song.

I was tired so I took a 1,5 hour nap before it was time to drive into town to meet my students at school. Today they were having a grill day for lunch with some outside games and this makes it easier for me to hang out with them.

My youngest son followed along for the day. We arrived at the campus and walked into the 2nd grade classroom. All the kids were happy to see me. It was awesome to see all of their smiling faces again. I spent the next three hours talking to and playing with the kids from kindergarten to third grade. One of the cutest moments was when I joined the first grade class and they asked why do you have that hat on? I said "I don't have any hair under it. Do you want to see it?" They shouted "yes". I took off the hat and they all wanted to touch my head. So I bent my head over and had 24 different hands rub it....is that good luck for them or me? Adorable. After three fun filled hours it was time to head home. Hugs galore from all the kids. LOVED. MISS THEM TERRIBLY.

The traffic was terrible to get home as it is the first day of a 4 day weekend. I was tired when I got home. I set my alarm and slept 1,5 hours so I could have enough strength for dinner at Stina's house and the neighborhood bonfire and fireworks later on in the evening. Awesome to sleep.

It was 6 p.m. and we walked over to Stina's house. I have boys, she has boys and there were a few friends there too. So the house was filled with boys - good thing they were on the trampoline before dinner and worked out some of their energy. Great dinner and company as usual. Thanks Stina and Alex.

We walked to the bonfire area. The children were lining up a bit away so they could each carry a lit torch to throw on the fire after the procession. It is always kind of cool to watch the procession and then how the kids form a ring around the huge pile of twigs and branches and throw the torches on it. As it quickly flames up, we are all backing away from the heat. As the fire dies out -- the fireworks start. They are always enjoyable to watch. The whole bonfire evening is a fun way to welcome in Spring and to see the neighbors. I might just miss that aspect of Sweden when we move.

Of course, it was really cold tonight and started to rain just before we got home. That is typical Swedish weather - they are even predicting snow for tomorrow-----hahhahaha. It wouldn't surprise me.

Tomorrow will be a day of rest. I promise to myself to try that for a whole day. It just might work.

LOVED. GRATEFUL. BONFIRE. HAPPY STUDENTS. HUGS. KICKING CANCER'S ASS.

Easter Sunday

2014.04.20

YES, you guessed it. I awoke before the alarm clock but at least I had slept through the night. I took Sophie out to the woods for her morning rituals and then we came back in and I made myself a big bowl of cereal. Everyone else was asleep. The silence was deafening but peaceful.

Jenny and I had stayed up late last night and stuffed 85 small plastic Easter eggs with jelly beans and chocolate so the kids could do the annual Easter Egg Hunt this morning.

85 small eggs...filled with jelly beans or chocolate.....

The kids finally woke up and they knew the rules. Eat breakfast, get dressed and everyone has to be ready at the same time. There are no good pictures from them finding the eggs because it happened so fast. I have never seen them move so fast. 

This year's weather was so different from last year when there was at least a foot of snow covering the ground and our friends were visiting from the USA.

The children found their eggs and gathered around the kitchen table to see what they got. A little bit of trading went on between them but for the most part they were quite happy.

Then we started to pack up the house so we could get home to start emptying the storage units and getting rid of some stuff before we move. I spent about two hours going through boxes and throwing out papers from 1992-1996. Why had I even saved them in the first place?  I did find Peter's dance card to the dance school we went to before we got married.........I am saving that memento.

Dinner was grilled marinated chicken breasts that tasted great fresh off the grill. I am tired today but not exhausted at least. Those white blood cells are increasing.......

So many thoughts going on in my head. It is hard for anyone else to understand the range of thoughts that fly past my brain. Positive thoughts that the tumor is getting smaller, everything will be ok to what if it's not working, my life is forever changed by this, I am a changed person, true friends show themselves in times of crisis, what is important in life, will I really live to a ripe old age, must do all the things that are important to me and are meaningful too.  Sometimes it is like a speeding freight train barreling down the tracks heading for........who knows what?

I have the support of family of friends and that really is keeping me going. GRATEFUL.

LOVED. KICKING KICKING KICKING CANCER'S ASS. FRIENDS. FAMILY. EASTER EGG HUNT.