cancer survivor wins a gold medal in swimming

August 26, 2008

Yes, it is true a dutch man wins Gold, but also wins battle over cancer (lukemia), which in my mind is much more important.

Advertisements

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.


She has changed my life

July 19, 2008

The She in this story is a many-faceted being. She is the Blogosphere, BabyCenter’s Bulletin Board posters and the greater internet family of lurkers.

From the Internet’s inception (thank you Al Gore? Ha!) I have been infatuated. I knew she was the best thing since sliced bread. I knew I would never be lonely or bored or lack for information again. I was it’s her biggest promoter amongst the older women I worked with who couldn’t see it’s usefulness. “You want to know who was in that movie? Why let me look it up on the internet for you.” Click, click, click, click. “It was Lorne Greene. Anything else you need to know?”

In February 2004, however, our casual relationship became serious. I was 6 weeks into my third pregnancy (#2 ended in miscarriage at 11 weeks) when my fallopian tube ruptured as I drove myself to the ER. It had been an ectopic pregnancy. I was devastated. Not only had I lost a second child but at 38 years old I had also lost one of my fallopian tubes and half my chances of conceiving. I was not in any high risk groups so I was also confused. I turned to the internet looking for answers.

I stumbled across BabyCenter’s Bulletin Boards doing a simple search. I lurked a bit reading other women’s experiences that sounded so much like mine. I read the caring, thoughtful responses and knew it would be safe to ask my questions there. That was the beginning of a relationship with a group of women that still exists today. They supported me and comforted me through negative pregnancy tests, charting my cycles and lamenting my advancing age. We cheered each positive pregnancy test and cried for each loss. I met my best friend, C, on that board. We talked on the phone daily for 2 years before we ever met in person. Daddy-O used to call her my imaginary friend.

In fact, C was the second person I officially told about my cancer diagnosis. I felt bad for it too because her best friend had died of the exact same disease (Inflammatory Breast Cancer) just a few years before. All of this, my diagnosis, etc., was before we had even met. She cried with me. She researched with me. She talked me down from panic when I tried to read my own CT Scans in my car on the side of the road. No real, “flesh and bones” friend could do any more than that.

I continued to post with my BabyCenter buddies through my cancer treatment. It wasn’t until I was back to work that I discovered blogging. By then all my BC friends had had their kids, as had I. Most of them were SAHMs, though, and I was back to work. It was a little harder to connect. C, sent me a link to a blog post my Amalah that was hilarious. From there I clicked on links in her blogroll. Soon I was clicking my way through the Blogosphere meeting the most amazing women. They were witty, intelligent mothers with things to say. Their lives became the highlight of my day.

Soon, I decided to start my own blog. I’ve never told anyone this before. My friends and family probably think I started a blog because I like to hear myself talk or can’t stand not to be in on a trend. The honest truth, though, is that I was looking to the future. I thought it would be a great place for everyone to be able to check on my condition when my cancer metastasized. Ha! How’s that for borrowing trouble? Of course my attitude has changed a bit over the last year or so. Now I say, “Just call me 10%, Baby!!!”

Through my blog, I met Susan from Toddler Planet, and Judy from JustEnjoyHim and from Toddler Planet so many others. I made a point to make myself available for questions and answers when Susan was going through chemo. I wanted someone to benefit from what I’d already been through. Inflammatory Breast Cancer is so rare there are no other cases in my immediate area. I tried to do the same with Judy. And Sarah from Spruce Hill. By that time, however, I was getting really busy at work and at home. It was getting really hard to keep up with all the individual blogs.

I really felt the loss. I was missing out on so much. Things were happening in the lives of these women, they were sharing important medical information and research they had found or been given, they were increasing awareness for IBC and I was out of the loop.

There is so much information in the internet’s vast resources, which cross borders and domains, one surfer cannot possible hope to access it all. But a network of bloggers with a common quest, sharing knowledge gleaned from her myriad sites, can increase their understanding exponentially. More importantly, That same network will expand that insight to their readers and so on and so on. Wasn’t there a commercial like that once?

I could go on and on. I could talk more about my son’s rare genetic condition, Norrie’s Disease, that caused his blindness. It is so rare that most eye doctors have only maybe heard of it. His specialist treats kids from the entire western half of the US & Canada. Through the wonderful, wonderful internet I am in contact with specialists, parents and adults with the disease through another bulletin board and Family Connect. In another time I would have no information about Norrie’s. I would have no glimpse into D’s future. I would not benefit from the experiences of parents who have come before me.

Oh, she has changed my life, alright. The internet has given me friends and family, information and peace of mind, strength and hope. I want to share it with everyone! That’s what the internet is all about. That’s what Mothers With Cancer is all about.


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.