I’ve never been able to sit still for long,  but now that my body has a limited time I am even more impatient. If my babysitter is late I am explosive, not because she is late, but limiting my time to get what I think needs to be done. Adding unnecessary pressure to my day and myself does not help any cancer patient, especially a stage 4 like myself.

I am often frustrated about how little I get done in a day. Always making comparisons to before cancer times which does not help. When I was healthy I could do X, Yand Z. As I am confronted with a new challenge I have to approach it much more carefully. Financial problems occur for every cancer patient. When you have exhausted your savings, things that where quite normal to do have to be limited, pushed back or forgotten.

I have an almost 4 year old whom I assumed I would take to the Magic Kingdom or the Epcot center sometime in her life time, but now I am on a personal mission to see it with her, trying once again to cram it all in. I am almost manic about it, and as auxiliary cash is dwindling, I just have to let go of this fantasy because of financial restraints and not physical or mental restraints from cancer.  I have a conference in Feb. to attend, but I don’t think I will go because of my financial concerns. I am not getting lay ed off or fired, I don’t have a job just a full time Mom, but what little savings we have has to remain not knowing what my funeral costs will become.  I hate to make this such a morbid topic, but I also don’t want to leave my family penniless just to bury me. In Holland they have an insurance to cover such costs, but I am not qualified do to my illness.

Imagine Bright Futures II

I have to laugh at the costs.. I must be in the millions! 200 chemo’s comming up!

Health-related quality of life during adjuvant treatment for breast cancer among postmenopausal women.

Eur J Oncol Nurs. 2008 Jul;12(3):180-9

Authors: Browall M, Ahlberg K, Karlsson P, Danielson E, Persson LO, Gaston-Johansson F

The purpose of the present study was twofold: first, to describe changes of Health-Related Quality of Life (HRQoL) during the adjuvant treatment among postmenopausal women with breast cancer; second, in the same population to identify the best predictors of Overall Quality of Life (QoL) after treatment, from perceived functioning, symptoms, emotional distress and clinical/demographic variables measured at baseline. The study group was 150 women (> or = 55 years of age) scheduled for adjuvant chemotherapy (CT, n=75) or radiotherapy (RT, n=75). They were examined before (baseline), during and after completing the treatment. Data about QoL, perceived functioning, symptoms and emotional distress were collected with the European Organisation for Research and Treatment of Cancer (EORTC)-QLQ-C30, BR23 and Hospital Anxiety and Depression Scale (HADS) questionnaires. The general finding was that the adjuvant treatments were associated with decrease in overall QoL, physical and role functioning, anxiety and body image, as well as with increase in fatigue, dyspnoea, pain, nausea/vomiting, constipation and systemic therapy side effects measured over time. For women receiving CT, better emotional functioning and less pain at baseline predicted better overall QoL at the end of the treatment. For women receiving RT, better physical and emotional functioning, less breast symptoms and lower tumour stage at baseline predicted better overall QoL at the end of the treatment.

PMID: 18343197 [PubMed – indexed for MEDLINE]

That my child starts piano lessons as soon as we move grand ma’s piano into the house and that may have to wait until the house in Zwolle sells.

I wish I had Wifi or blue tooth access and to buy a small mini computer, I just saw one with a 2 and a half inch screen. now that is mini. I want  to buy  it for my birthday so that I can blog while I am at the little gym or the ballet waiting room. I have been reduced to knitting or reading a libelle magazine which feels like a waste of a solid hour and a half.

I have never been the kind of person who can just sit.

So I will stop my birthday wish list before I breakdown and cry. Wishing for such things as a longer life, seeing my child graduate from a university or life events such as marriage and grand children.

My mantra, and ultimate birthday wish is staying functional as long as possible, which is my main goal with stage 4 cancer. Stubbing my big left toe has hindered my activity, which does not sound like much to the average person, but it has limited me tremendously. But I will continue to forge through a 10 kilometer walk and practice more patience as we wait out the time until I get a new body scan,  MRI

I wish for my girl that she has a wonderful life with her mother and father as long as God wills and that my husband has a loving relationship with his daughter and I.

Chocolate cake :

20 ml of cold milk

30  gram powdered sugar

150 g butter

225 g flour

30 g cocao

brownie bottom of the cake is above, the rest is the filling

50 g cacao

115 g butter

300  g brown sugar

50 g honey

4 eggs

serves 10 people.  ususally make one small pie pan and th others in a bread pan, any extras becomes individual muffins for easy take with you treats for after ballet or little gym.  Enjoy

Not recovering from surgery or radiation treatment, but from St. Nicolas. My baby wanted to see if there were more presents at the fire place. She was highly disappointed, and sad. So sad we had a hard time convincing her to go to preschool in light of all the cool new presents to play with. The shining light on this subject was that it happened to be the birthday of the teacher which means the party continues. My little darling had to buy a single flower to be put into the bouquet for the teacher.

I am woke up to see a piece of tap with a small flag like piece of wrapping paper attached to my purse.  I am using my No , I have cancer card and not going to the teacher’s party. The stimulation is way too much for me today. I just want to take it easy, I have a cousin coming for lunch and that is plenty of activity for me for one day.  I am not going to feel obligated or guilty not attending a chaotic kids party with enough parents to step over.

I have but one small problem, I don’t know if my new chemo is working or not. I probably will not get the results next Monday no matter how in advance I get my blood taken. So I have to let it ride until after the holidays or do I ask for my fresh scan results ( which put me on this new medicine in the first place)  and get a second opinion. If a second opinion is possible to even get in the holiday season.

Americans are known for their persistence, but I take it too far some times. I will definitely get what I want, but not in the time frame that I come to expect. Europeans are much better at taking it easy and going with the flow. It might actually turn out better this way.

but I insist! and insist. my idea was to have high tea today at the Amstel-hotel, this is not some ordinary hotel but on of the grand great dames of Amsterdam. ( when rock and roll stars like the rolling stones come to town, they spend it in the lap of luxury. When oceans twelve was being made, could you find Brad Pitt hanging out there. Hip, cool, and luxurious.)

But once my one friend called in sick, I asked if the other friend was up to it or should we move the date. She suggested we move the date so that we all could attend. I nodded respectively, but I still wanted to do it regardless. But if fully understood, that my pushing the issue would not help any.

So here I am, all dressed up and literally no where to go except back to bed. I feeling a little friendless, which I should not feel since we have made arrangements to do high tea next Wednesday instead, but I am a bit out of sort still.
The Hotel intercontinental Amstel was not shaken or disturbed, and more than happy to shift the date to December 10 for me.  My love bug also has a chance to get over her hacking cough and the sniffles.

I just push too much.

by the cnn heros,  but also by a new me-magazine called flow. But the sub-titles pulled me in enough to plunk down 6.95 euros. which is a real rarity for me.

LIVE MINDFULLY, SIMPLIFY YOUR LIFE, FEEL CONNECTED, SPOIL YOURSELF

What do these things mean to me,

Live mindfully

prefection does not exist!

Don’t leave a trace like a sailboat cutting through the water only leaving temporar ripples. For those who camp in the wild, don’t leave a trace where your campsite was. Be good to your surroundings and mother nature

“Do it yourself from moment to moment” – University Leiden Netherlands

Money does not make you happy- Mom

Travel children and cancer combo, creative moments, thoughtful moments, self trust- listen carefully, Take good photos of yourself up a prominant place for those down days to remember.

Your truth is today, Yesterday you could not do over, tomorrow is yet out of your reach.

Raising your child- sit with your child sketching, every child treated like an individual. Build a lego castle,  house, farm even a dog house is okay.

Mini meditation time as you take knots or gum out of your child’s hair.

I’ll start with a metaphor to help you relate to how I am feeling at this moment. I was in the car with my loving daughter on my lap sleeping while my Love of my Life hubby went into the beach house to turn the water off and bring the bags. At first I heard a thick dapples of water almost a jazz rhythm and was enjoying the moment. chicka boom ratatat bom patz. I was realizing the temperature in the car was dipping I took my shawl off and put it over the legs of my little one preparing her tiny body from the cold weather. The suddenly it was still, the snow lightly caressed the windows and quickly melted. But then there was a moment when the heat of the car could not match the cold frosty air. The windows fogged up and the snow began to stick, one little snow flake a a time until you could no longer see out the windows. The snowflakes made clusters and slid down the front window of the car forming a sort caterpillar game from the late 80’s. But no shooting involved. Then I realize that is how my cancer is coming on my body. I still think I am at the warm body stage where the snow is still melting on me, but my defences are getting low and fog is starting to form, My body has less clear moments, and I have had a few dizzy and rare moments lately. I have clusters forming in my hip and my top part of my left leg. I don’t know how long I’ve got before I am past the point of no return and can not change the hands of time. When the cancer sticks like the snow on my window. Not being able to see or express myself and settling into quite isolation. Not able to  walk, talk or sing a single syllable.

My results are mixed blessing. In two weeks time is it st. Nicolas which to the Dutch is much bigger than Christmas. I will be on a chemo pill regime called xeloda which is a capecitabine, for the drug world a cytostatic.

This is a scary change over because for the first time in years I can feel my small motor sensors, my fingertips can button a button or pick up a thin coin such as a dime from the table. I could grip a receipt and not let it fall to the ground thinking it is still between my fingers. Finally some return to functionality. But that might all be thrown to the wind because this new pill form of chemo warns of not wearing tight shoes and tingling hands.

So what do I plan to do about it? Get a manny and a peddy? well maybe, but also get myself practing my grip ball and practice wiggling my toes who sometimes don’t take commands from my brain well.  I am going to double up my physical therapy and hope to ride out this storm, but I am honestly not confident. I just want to make it through Christmas in the states and maybe search for a 2nd opinion. This pill form chemo gives the mobility that I lust. So in some ways it is a blessing, but let’s hope that this 3 pills after breakfast and dinner works.

I am I hopeful? somewhat, but less confident than I have been in the past. Realistic. I have no hot spots in any of my organs and this stage 4 patient is quietly holding her breath.

 

a

As the Christmas season goes into full blown mode, I just have too much on my mind. I tried to drop shop a jaindl turkey for Thanksgiving, but unlike Omaha steaks which are also frozen they have not figured out the procedure to fed ex their  gobblers.

I for one can’t wait to get some turkey in me because it has a hormone called serotonin that helps you fall asleep. So anyone out their suffering like me from insomnia, Have an extra portion of turkey and sleep like a baby.

I am waiting still for a scan that will happen in 2 days time.  I guess the un-known is what is keeping me up this night. That and a friendly little mouse that I am trying to capture before he takes up residence underneath one of our many bookshelves.  This little field mouse has out witted my traps and mouse hotels I have set. I am extremely scared and scream with the power of an opera singer when I catch sight of these little creatures.  I have not seen this particular one, only heard the scratching. So with big dark circles under my eyes I will try again to go to sleep.

I have scanned all the circulars and finished my intended knitting goal. I am still thinking what a nice day we had with a playdate and lunch before little gym. I took pictures because soon my little one will change classes and we might not see the same kids that we have seen in this group. Posterity is becoming a big thing for me. capturing moments in time…

My old edema therapist use to tell me she had more clients in the hot summer days than in the winter due to fluid retention. I  tended to also be more blown up in the summer. But now that the winter is settling in my edema that was in my right arm has shifted to my stomach. I have lines around my good pants that have an internal button.  I look like Playdough that has been pressed by a button.

I still have thick fingers and that makes me very depressed that I can’t wear my wedding ring on my right hand which is customary for PROTESTANTS in europe. I wear my ring on the left hand like all americans, but in europe that is symbolic for catholics. So when I  GOT some funny looks at my church. There must be a catholic amongst us!