My negotiation skills still work

January 30, 2009

I am out of the hospital and home!  I woke up to the sound of puking, but it was not from me but from my little princess.  I think all the emotional separation has impacted her immensely.  The day wore on with more  throw up and soft bowel movements. I vow to call the doctor if it continues for more than 24 hours.  Sure enough, last night at dinner the dinner table had a near miss.

Oddly enough I was glad to be home and purposely there to rock my sweet child to sleep, and attend to her feverish red cheeks. It totally distracted my own pain, that is now a constant reality for me.

In the hospital they want to know on a scale from o to 10 how much pain you are in.  My answer now is 3 but in the lonely hospital with nothing else but myself to focus on was the same painful region an 8.  Diversion is not a cure for me but definitely a good home grown remedy to cancer pain. You could say it was another form of negotiation, but not with the doctors, but within myself.

One other negotiation was that I allowed my child to use scissors real adult scissors for the first time. But not to cut an ordinary piece of paper, no much more significant. My Hospital Arm Band!  It was a special occasion for both of us. Our little unforgettable moment. I have to make more unforgettable moments as soon as possible.

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Rounds of radiation linger in the air

January 17, 2009

Just been out of touch for a while, and wanted to get everyone up to speed on what has transpired in the last 5 days.

I came back to bad news, and immediate action is taking place. Well as immediate as the socialized medicine system can do. I have been bumped to the top of the MRI list and am getting a new scan Sunday at 3:45 GMT.  After waiting 5 months for my last scan and now getting two what I consider back to back inside of  a month, makes me ponder the logic to the whole wait list system.

But apparently my blood level have skyrocketed ( see more on cancervisa) and I am scheduled to see a radiologist in the near future to examine the “growth” and determine the best approach to this aggressive  cancer activity. I really am not looking for a chat session, and then tease me and call me back later. Filling my head with bad news and waiting with anticipation until they can do sims ( simulations) and finally get to the radiation.

I guess I want to let go of the formalities, and get down to why we are there in the first place.  I’d be just peachy if I got a 5 minute consultation before I hit the sims and be Zapped that same day.  I am aware of the dangers, can we just get on with this please?  You can see I have been around the block a few times with radiation, and I have  had my red chest marks to prove it.  So for those who wanted to visit and catch up with each other in Texas at the Dallas YSC conference, I’ve had to give back my scholarship and still fighting the travel insurance company to get my ticket refunded. Just a bit annoying at best, compared to what awaits me. RADIATION ugh.


Who wants to help me write a bill and send it to congress

December 10, 2008

Hilary Clinton introduced the mamma gram. That every mother should get a mammogram. I think we should become women advocates and take the mamma gram a step further. We should require a young women to get a mammogram before she enters the work force, or before she goes into higher education. Make a physical and a mammogram part of the entrance requirement to university-college. Why you ask. Why such drastic measures.

Well my take on it is survivability. It is know that is stages one and two are 70% curable. But where it gets hairy is when the cancer goes undetected like mine and heyjudeseattle …see her video.

http://www.trusera.com/health/stories/michelehyra/living-with-stage-4-metastatic-breast-cancer-at-40-and-grateful-for-it

The other reason for a mammogram is to have a baseline, a clean slate as it were to base better prognosis and know better courses of development.  I would rather have thousands of dollars wasted to have nothing show up on a mammogram than have one younger women die of cancer because it is considered an old age disease.

Did you know the fastest growing group of new cancer patients are under 40 years of age and premenopausal. Balance that against all studies are made around POST menopausal women. So basically the medicine world does not have a clue how to treat a premenopausal women except to force her into menopause via drugs or removal of ovaries via an operation.

Who wants to help me right a breast cancer bill and send it to congress!


stand up to cancer su2c

August 25, 2008

I officially signed up to be a star. No not American idols, but a cancer patient that friends and family can donate money to cancer research. I am a person living with cancer. It will never go away only be repressed because I have a dreaded inoperable tumor. If someone told me tomorrow I could have an operation to get rid of the cancer I would ask “Where do I sign?`My Moms with Cancer blog is gathering strength to become a team. I am all for team playing, but I thought I would give the donation concept a head start.

I never beg for money, but the last few weeks I have been faced with the problem, what do I do with myself once my baby goes to school full time in March 2009. I think I am formulating an answer. I want to help raise money for cancer research. I want to help solve the puzzle called cancer before I wither away from it´s awful affects.

In September the goal of a few thousand dollars is in reach.  Sponsor me as a star in the constellation of cancer life. It is such a small thing that can make a big difference.


Cancer info-booth outside the outpatient cancer department

July 14, 2008

As a curious soul I entered a luxuriously mahogany wooded booth with two functioning computers with all the favorites hit in for cancer patients. I asked the women behind and office looking inner room what was the meaning of all this anyway. You see I have a nanny who might want to know exactly what is happening to me, and a 3 year old who might need a bit of explanation now that she is asking questions, and acting as if she is dead and saying “I am dead”. I have been rather freaked out by her comment about death, so was I in the right place?

I got shuffled off to a summary in English that she gladly printed out for my Au-pair and said she would make further contact via e-mail as soon as possible, or whenever her colleague returned from the lunch break. She her self seemed quite flustered, maybe because I was her first “customer” with a demand.

I went back into the department where I get outpatient care, and explained that I did not want a book about kids with cancer, or a free backpack, but a book about why mommy has cancer. I dumb founded the nurse who was also new, and eager to help. I took the pamphlet anyway to make her feel better, but it really was not what I was after. ( In fact NO I don’t want to scare the living daylights out of my daughter, she is already empathizing with my pains and now itchy skin telling me she has it too.)

I don’t need to reinforce that she too could at this very moment have cancer by giving her a book meant for children with cancer. God help me if she has cancer too at such a young age it would destroy my psychological well being.

My child needs a picture book in cartoon form of her mommy getting medicine in a tube from a doctor. She does not need to understand what cancer cells are and what chemo does. Just a book about the process of what does Mommy do when she goes to the hospital for the day. Does she get time to talk to the doctor and nurses or do puzzles like she gets to do in the play area?

Gals, I think it is time to think of themes and I’ll get back to doing some sketching and making storyboards. I found a cheap ringed watercolor paper when I have finalized the ideas. If a book is not provided for me in the next 3 weeks, I will make my own, thank you very much. I have made other home made books about how the wedding for my brother was going to be, I can make one about a subject I am also very familiar with. Any takers on subjects or simple analogies for a 3 year old? Let’s hear them!


mammaprint – insurances refuse coverage

June 19, 2008

I wrote a while back in my cancervisa blog about a dutch discovery mammaprint. Basically they analyse a tumor cell and can accurately predict longevity with 90 percent accuracy. This would save senseless chemotherapy for some and give a better read out for the doctors. The problem is that health insurance companies are not paying for the screening. I can’t be more outraged.


contribution to society-life 101

June 18, 2008

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. Thee 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 conference setting with 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! sorry for the cross post on cancervisa