While waiting for my chemo

August 11, 2008

I waited and waited over an hour past my official appointment time until my labs came back.  I was glad to see the doc but shamed that I had to tell her I fell off my bike.  She shook her head and could not believe I was biking in such strong winds. She even took a careful walk instead of getting on her own bike yesterday.  I was just grateful she did not ban me from my only mode of transportation, my bike.  We have been having such a good vacation that I could not worry that it took close to 5 hours to finish a 1-2 hour normal treatment. I asked my loving hubby to go to the news stand and buy me a search a word puzzle book in Dutch of course,  I pretended to still be on the beach and puzzled the afternoon away, no sense in complaining.

I was not even jealous of the lady next to me getting a full facial. I have only 3 days and I’m back to the beach house knowing my numbers are 92 and 14. I think I will even have a sangria when I get to the sandloper restaurant on the beach as a celebration. 

I did use my cancer no card for  the Amsterdam Parade. I would have to shake too many hands and have to explain my thin curly hair to too many outsiders.


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!

Rushed back for a birthday party

July 6, 2008

My little 3yr Old was invited to two birthday parties in one week. Now that it is the end of school kids with summer birthday’s are trying to get them over with before the vacation period gets in full swing.

I had to refuse one because it was a chemo day. But we did buy a gift and gave it to his Daddy on the last day of school. We did make the second party that had a Dora theme. Everything was Dora, the cake with  the plates, napkins the table cloth and balloons…

more later. I just heard my little one waking. no diapers got to run!

Finding a deer in the woods

June 30, 2008

 I think many of the students were trying to get a grip on cancer just as I was trying to take a picture of a deer that was less than 3 yards away from me with my little girl’s digital camera.  I use this symbolic picture to portray how difficult it is for a student of medicine to understand how it feels to be in my shoes. Just as I was trying to understand the deer in my side yard.

I hope gave light on topics of quality of life, anger, scared out of my wits the first time I heard the C-word. How does one manage knowing that I have not won this battle against cancer. That I watch others go back to work, and try /start to re-build normal life’s.  I slowly (thank God)  slowly rot away day in and day out. No Scan brings good news just how much further the cancer has infiltrated my bones and praise God that it has not jumped to any of my organs so far. I am aware that I will never be saved/healed. I am terminal, I accept this fate. I just want to live and function as good as possible for my child. Not saying every moment , I am tired, and I can’t do it to my loving caring 3 year old who says she will take good care of me. I shed a tear and thought of the song Butterfly kisses after bed time prayers with little white flowers all up in her hair.

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.

who’s who of cancer- Susan Suitch -about

June 16, 2008

I am the longest chemo patient I know. That said I realized that back in November 2007 I had my 100 Th chemotherapy treatment. In 2001 I started out with an optimistic view eventhough I had a so so stage 2 ductile carcinoma with 3 out of 10 lymph involvement at the sentinel nodes. No family history, not even a distant relative twice removed!

I saw my cancer as a project that had no end. I was impressed by the approach from my initial Doctor Breast Specialist who became my team leader through out the whole ordeal. It was not until my first reoccurance in a new country under socialized medicine when I really started to worry.

After successfully beating Cancer the first time, and being 5 months pregnant only to hear “it’s back” just took the stuffing out of me. After the birth of my beautiful daughter who had to endure chemotherapy and radiation while still in my body, everything started to settle out with hormone pills first tamoxifen and then arimadex. But without warning in September of 2006 the pills just stopped working. No rhyme or reason, just not getting the results and my tumor markers were sky rocketing every week.

When I heard the words “life long chemotherapy”-that is when I started to blog. under the name cancervixen and now cancer visa. I started not that long ago a new blog Chemo100 which has more personal data about me and less research.

You see I am shy by nature and easily attach to others emotionally. I know I could not go to a support group. This blog mothers with cancer is my support group. I invite you to join along on our wild adventures with our precious kids and loves of our lives hubby’s who have been our pillars of strength.

I am using my maiden name because if you google my married name you get a famous band or my politician sweetheart.

When you least expect cancer

June 16, 2008

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.