This week was hard without Loveofmylife, but the weather and the beach were just tugging on us so hard. We had a week of fun and sun. My 3yrold ask Papa do we need to tank up? That is what I always ask to get drinks and such for the road or I need to pack juice boxes. I had to giggle, she is such a little monkey see monkey do.  I love my 3 yrold she is such a natural explorer. She was digging in an ant hill and studying spiderwebs. No arachnifobia here!

I have bought her a digital camera, I am going to post the 3 yrold perspective. Her first self portrait.

see what a man does not what he says- randy pausch. I too am building safety nets for my child. Because she is an only child she does not need to learn to share unless it is forced on her. I.e. playschool.

But I am also writing a journal and have decided to watercolor a book for her explaing mommy’s sickness.  Like kids who have diabetic parents, they see medical things as giving yourself a needle quite normal.  So when my 3 year old asks why do I have an bohboo. I say that the doctor gives me a very long shot on a big sack and not just in a little tube. She takes in the information and moves on. It is just another form of normalcy for her to see. When she is a bit older, and I am still on life long chemo, I will let her see me attached to a pole with an infusion hanging. Right now I am not so symptomatic so I choose to reveal that part of my sickness to her later. She does not need to see the harsh realities of my life. Not yet, please God, not yet.

I look forward to having a recovery week on the beach with my journal and a puzzle book in my hand. I plan on painting after being inspired by 40 open studios this weekend. I haven’t felt the need to knit, but I plan on going by my favorite wool shop and no doubt I’ll find something that will catch my attention, usually pink in nature.

It as a unusually sunny spring day, the kind you really enjoy after a long winter. I remember clearly not wanting to go to my “check up” and rather finding an ice cream stand and basking in the sun for a while. But dutifully I went because it was to be my last before I moved country.

You see I was leaving my job and in the process of moving to Amsterdam, Holland where I was planning to be married!  I had only a few days before my insurance was to run out and I just figured I would tie up some loose ends before I kissed the good old USA good bye.

That check-up day would be the longest day of my life. First of all my own Doc was taking a vacation, and this young intern gave me a vice grip for a hand shake and extremely over in enthusiastic check up. She went around and around my breast to the point I was starting to think she was getting intimate! Then I thought, heck she just does not know what she is doing… Was I far from off base.

She immediately asked for a mammogram. I was 34 and never had one before, so naturally I agreed, but reluctantly went off to the next MRI clinic that same day only to find that this young intern really knew her stuff. Not only was she correct but she was also well connected to a Philly doctor who is know to be the best breast man on the east coast.

I got hooked up immediately with the Philly doc taking my photos with me. I have a dear friend who is a ex-nurse who slapped the mammogram up on her word processor white screen and turned to me and said.

“Honey, I am no expert, but there is definitely something wrong here”. And I curiously looked at this outer-space shaped tentacle spider like thing glowing back at me from her computer screen. She told me to be strong but brace myself for some form of surgery just to get it out of me, malignant or not.

I hugged her and said, I have a good life and this thing is not going to stop me living it to the fullest. She laughed and in her May West raspy voice she told me “you go girl”!

I had an appointment which after sitting in the waiting room and hearing that most patient took 7 to 10 months to even speak to this wonder-breast-doc.  Even hear stories of he doing some breast stuff for famous people. I felt I was in the best hands possible. Even when he gave me the news, my sister almost passed out from the shock. He walked in the room and as he was shaking hands he beautifully said, we all know why we are here. I nodded, and he continued to tell me the details of the size and shape of my tumor and that it most likely has “escaped” into my lymph and hopefully was caught by my sentinel node.

He called another expert at Sloan Kettering where he had contact, and done a stint there in New york. He conversed that with my age, no holds bar was necessary. We are going to pull out all the stops! Wow, I was really impressed to even think about myself.

It was not until I got to the secretary that it had finnally sunk in about having the surgery and being turned into a blue smurf so the cancer could be easily traced. Even the stay in the hospital came down like a ton of bricks. I can remember having a hard time seeing my way to my sister’s car. My eyes were beginning to well up.

We decided to not go home but to get a bit to eat.  I ordered a soup, I had no appettite. My sister is good at assessing situations, she asked me what I was thinking. I said, I AM SCARED SHITLESS. and I don’t curse as a matter of habit. She then said, what is the worst thing that could happen? I answered. I could die.

 

Laura Van ‘t Veer the inventoress who is making great strides in looking at the tumor that is removed and can now better predict the chance of cancer spreading. Until now the size of the tumor found, the age of the patient, the sharing of cells ( translation of dutch) was the criteria. Now this Dutch invention called Mammaprint is giving more information to metastic growth potential.

http://www.time.com/time/specials/2007/article/0,28804,1677329_1678169_1678157,00.html

 

 I still can’t believe insurance companies will not pay for this new screening!

Yesterday I was barraged with many questions from upcoming docs, in there 2nd year of study. Are Docs different in America? What do you do different now, since you have cancer? How has your life changed? Are you angry, scared, or wanting to go back to work? These questions seem simple compared to explaining to my 3 year old that I don’t have eye brows because of my medicine. When the hair falls out or gets thin, which is in my case, the medicine is working.

At this meeting of the minds yesterday, I talked for  3 hours straight, was given a ergonomic comfy chair and loved every minute of getting my brain picked.  I keep a journal and have for years, but now my focus is on getting my 3 year old the advice she is going to need to survive her crazy world, with or with out me. I drew many references from these journals to best answer the questions.

I have a lot of offline work to do today while the questions are still fresh. The problem is that I talked so much I have a sore throat and a temperature. Serves me right for shaking every ones hands, by my rules I don’t do that much anymore, and now I remember why. There were 16 students who were asking the question and the first few questions were very emotional. Then I got into the rhythm of it all, and then things got better. Once I realized these young docs will soon be practicing medicine and I am their first “face” of cancer. Survivor specialist is how my shrink introduced me, I had to chuckle.

In typical dutch fashion I got a huge bouquet of flowers, to thank me for my time and effort. See below

This is not an announcement of baby’s being born, but of the passing away of two parents in side of 10 days. My friend’s step father has passed away at the ripe old age of 81, and the father in law at the age of 90. I can’t even imagine the chaos that must be going on inside the family household.

I am not good at going to funerals anymore. I get too reflective over my own situation. Sometimes I think I am strong enough, but I end up just being a sobbing mess for days. My husband and I wrote a letter claiming to be too busy to attend, but that my white blood cells are at 2.5 and not wanting to frighten anyone with the real truth.

I am vigilantly praying for my friends family today. Hard enough to have one death, but 2 in 10 days.

I am not famous enough to help raise billions of dollars for breast cancer, or powerful enough to give influence. You will never see me running with the olympic torch. But what I can do is have the forum to speak to young up and coming doctors about my sickness cancer.

I am able and capable of getting in a taxi, riding across town and spontaneously answering some questions given to me by my psychologist. Yes, I believe a shrink is necessary to get through cancer. I can’t rely completely on unprofessional help. There have been melt down points when even love-of-my-life asked me to call the professionals in for advise.

So I am a little nervous because this will all take place in a intimate setting without stadium seating. I was earlier in my life, just after grad school, a college professor. I returned to this field in Holland when we were planning a baby. The combo between teaching and children sounded good. Both times I spoke English all day long. Now I have to brush up on my Dutch, otherwise I won’t be credible. All I want to do is make my contribution to society today. Even if it is in some small way, like this post, or in a grand scale this afternoon.  Wish me luck!

I decided to make my own collage of photos. This week is the studios from half a dozen artist in the region. We will go and look at the fine works of art.  www.kunstschouw.nl DONT CLICK THE FLAGS RIGHT AWAY YOU WILL MISS THE SLIDESHOW!

IF YOU WANT TO SEE CASTLES CLICK OMGEVING

Chemo yesterday has me a bit confused. I should be happy my tumor markers are down again…Yippee! but I am getting mixed messages. My white blood cell count is hovering around 2.5 which is not acceptable. So basically I am an AIDS patient right now. One false sneeze and I could wind up in the hospital with God knows what.

Knowing I can’t recover with such a low immune system, I have decided to self-quarantine. Stay inside, keep clean, no painting today with dangerous pigments, no shopping or going for a ride on the bike. Just a quite day at home resting.

The problem is my mind does not want to rest, it is a sunny day and the weather forecast is to be beach blanket bingo kind of day. I sit to think how I could make the day fun inside. I bought a book yesterday in magazine form. I even bought a puzzle book that I was planning to take to the beach this weekend. I am going to dive in to that hoping it will capture my interest. I often can not read for extended periods of time due to my neck brace. So what is a girl to do with her down time? Call a friend over as long as the friend does not have a cold. Schedule a massage in house? Keep a mental list of what needs to be done once my white blood cells return to normal.

Every day I try to make it fun filled with a 3 yr old and me being a cancer patient. But today we are going on an adventure.  We have no set plans, just exploring in the Amsterdam Forest. This park use to be the sight for the Olympic rowing teams, and now it is a great walking path with a huge rectangular lake in the middle. The terris is open and a place to eat and drink may be in order after a day of butterfly watching and bug finding. I will have to be careful turning over rock because of my chemo does not want me in the garden so I assume rock turning also applies.

I have my flower book ready and my field binoculars to look for birds that are in breeding season right now. I am going to tell my little one about our Dora day as soon as she comes back from preschool. Until then my desk needs a bit of filing and then a touch of ironing and we are on our way.

I love spring, don’t you?