Archive for the ‘Childhood cancer survivorship’ Category

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Why do I do this?

September 22, 2008

Periodically, I decide I need to google “Wilms’ Tumor survivor” and/or “childhood cancer survivor” and see if there is anything new I might want to know.  Nine times out of ten, it is all stuff I have read before.  But then there is the one time, like tonight, when apparently a new article published by the British Childhood Cancer Survivor Study has come out, stating, and I quote from the abstract,

“The overall risk of second primary neoplasms in survivors of Wilms’ tumour treated between 1940 and 1991 was substantial, and solid second tumours tended to develop in the irradiated tissue. Continued follow-up of these survivors is important to monitor such late effects of treatment. It is also important to evaluate the risk of second primary neoplasms following more recent lower radiation dose treatment practices.” 

Aliki J. Taylor, David L. Winter, Kathy Pritchard-Jones, et al. Second primary neoplasms in survivors of Wilms’ tumour - A population-based cohort study from the British Childhood Cancer Survivor Study. Int J Cancer. 2008;122(9):2085-2093

Now I’ve only been able to read the abstract and a couple of small article blurbs, so I don’t really know the impact of study with relation to my actual treatment.  I did send an e-mail my former nurse practitioner at the University of Michigan to see what she knows and if there is anything to be concerned about because I do fall into the category of years and I did have higher doses of radiation therapy to my entire abdomen, though I don’t know the difference between British treatment protocols and US treatment protocols.

So now I have something to think/worry about until I hear from her.  Honestly, I’m not totally freaking out, which would have been the case in the past, because I know that the likelihood of this having any impact on me is minimal but still I have to admit this is my primary fear-  that I will have cancer again.  Not Wilms’ again because it has been too long- just something new and potentially related to the treatment I received.

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I used it anyway

September 16, 2008

I ended up deciding to use the essay that woke me at 5 AM for the application.  I took out one part of a sentence and I added a paragraph to the end.  I was going to add more but then I decided if they can’t infer what the benefit of a grant towards our adoption costs would be from it, I’m not sure what they would want me to say.

The other essay I had written was fine.  It just felt a bit like a school paper.

Everything is now in, so wish me luck.  I’m not sure when they are planning to announce the grants/scholarships but I’ll be sure to let you all know what I find out.

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There is No Going Back, Only Forward from here

September 14, 2008

I woke up this morning, after about 4 hours of sleep, because I have to write an application essay for our grant application to the SAMFund (this time we are applying for adoption fees).  Now, I had written one which I sent to my sisters to be edited but for some reason, my mind was churning a different essay and I couldn’t fall back to sleep.  So I got up and this is what I wrote:

APPLICATION ESSAY

 

It is 5 AM.  The deadline is fast approaching.  All the rest of the paperwork is done- the financial information, our taxes, medical releases.  The easy stuff.  Done.  Most of it completed within days of hearing I could continue on in the application process.  Now, I sit and stare at the computer screen, wondering is it even possible to put words to the tumult of emotion that greets me when I reflect on my life as a cancer survivor?  How can I summarize the bittersweetness of the journey to motherhood I am on?

 

Do I write about the diagnosis of cancer my parents heard when I was five years old?  Hearing those words after weeks of unexplained fevers, lethargy, back pain.  We see a mass on her left kidney.  We think it is what is called Wilms’ Tumor.  You have to leave your other children and go, tomorrow, to the children’s hospital two hours away.  For treatment.  For surgery, chemotherapy, radiation.  You are about to enter a world, no parent, no person wants to be a part of but there is no other option if you want your child to live.  We go.  In a whirlwind, I have surgery, start chemotherapy, have my abdomen irradiated to rid it of cancerous cells.  There is no going back, only forward from here.

 

Or do I write about finding out at the age of 17, that yes, you have acute ovarian failure? And, no, there is no chance of pregnancy on your own or even with your own eggs.  They are gone.  Shriveled.   Dead from the radiation.  Maybe you can do in-vitro fertilization with donor eggs but we don’t know if even that will be successful.  After I’m home, I cry to my boyfriend, “what man would ever want a woman who knows she cannot have his children?”  In his 18-year-old way, he comforts me, tells me “Any guy who would leave you for that isn’t worth having.”  Three years later, we get married.  Three years after that, we attempt IVF with donor eggs, my older sister going through egg donation just so we could have a chance.  We try three times.  One embryo transfer.  Negative.  A second embryo transfer.  Negative.  A third and final transfer. And a final negative.  Our reproductive endocrinologist looks at us and says “There isn’t any more that we can do.  You should consider adoption.”  There is no going back, only forward from here.

 

Do I write about the depression that begins to envelop me?  The failure I felt about not even being able to become pregnant.  That I wouldn’t have gotten cancer if there was not something inherently wrong with me.  That maybe I wasn’t meant to be a mother, despite dreaming of it for as long as I could remember. An internal dialogue that repeats itself over and over for the next seven years.  My doctor puts me on antidepressants but, otherwise, I attempt to ignore it, push it away but it festers underneath.  I begin to lose my faith in God.  I tell myself, “There is no going back, only forward from here.”

 

Or do I write about beginning the adoption process?  We choose domestic infant adoption.  We want our child to have a connection to his or her birth family.  We choose an agency.  We save money for the fees.  We complete the homestudy.  Create our profile.  Wait. There is no going back, only forward from here.

 

A year later, we have feel the joy of being chosen.  But then, the devastation of a mother changing her mind.  Keeping her baby.  How did we come to love something we never really had?  It was a miscarriage but the baby still existed, just not in our lives.  With trepidation, we continue waiting.  Praying that, in the end, there would be a baby, a child for us to love and raise.  There is no going back, only forward from here.

 

A second year of waiting begins.  All around us, family, friends begin to announce pregnancies.  We wait.  We wonder, ”Will it ever be us?”  We decide to check out other adoption agencies and talk to a couple different ones.  Find one we like, one that needs families because it does not have enough.  Holding our breath, we switch.  And another phone call comes.  We’ve been chosen again.  We meet the mom and we wait.  Three weeks later, we are holding our daughter in our arms.  But what a juxtaposition of joy and grief.  The pain for our daughter’s birth mother is tangible.  The seed of love we have for our daughter has already been planted.  There is no going back, only forward from here.

 

Or do I write about the fact that for me, the love I have for my daughter and the joy of becoming a parent, does nothing to alleviate the depression hovering below the surface of my life?  It begins to creep out, to permeate my life.  But still I refuse to see.  Then when my daughter is eight months old, depression’s black hole sucks me in entirely.  I stumble through the days and nights, in tears, confused.  Shouldn’t I be happy?  I am a mother.  Isn’t this what I wanted?  Is there no going back? How do I go forward from here?

 

I talk to my family doctor.  He refers me to a counselor.  I go for a few sessions and quit.  I converse with my doctor for months by e-mail.  We talk about everything under the sun, including God.  He is in over his head but he invites me to his church, helps me rediscover God.  But still I am depressed.  Through his church, I connect with a new counselor and I change antidepressants, hoping that will help.  Instead, I fall further down.  I think about suicide.  I think too bad I didn’t die from cancer.  Life would be better without me.  In the midst of the swirl of suicidal thoughts, I cling to God.  I e-mailed my doctor.  Help. I’m scared.  I call my new counselor.  I am referred to a psychiatrist who checks me into the psychiatric unit of the hospital.  We change antidepressants again.  I begin to stabilize.  I check out of the hospital.  Then comes the hard work.  I see my counselor, my psychiatrist, my doctor regularly.  I begin to talk, to verbalize the internal discussion I have been having for the last seven years.  I connect with my counselor and he guides me through my emotions, thoughts, patterns from my childhood to the present.  I begin to really work on my grief and loss related to being a cancer survivor, the resulting infertility.  There is no going back, only forward from here.

 

Soon, between the new medication and the counseling, I find myself coming out of the depression.  Some days, it is like I see my life, my daughter, my family for the first time.  I remember what it is like to be happy, to have joy.  The depression begins to dissipate, not just get pushed away.  Two years and many long hours later, I can truly say it is gone.  I live each day, remembering that I beat cancer and depression.  There is no going back, only forward from here.

 

Now, it ends up that this doesn’t really work for the essay I need to write because there is no way to work the rest of the questions into this format.  So I think I will submit the original essay, but figured this was as good a place as any to share the other.

This after I said I don’t need this place as much any more :-P  

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A Long Way

August 12, 2008

I had an appointment with #5 yesterday morning.  I’m seeing him about once a month now, give or take with vacations and whatnot this summer.

He had to write a letter to our SW for our homestudy stating how he feels about my progress, stability etc.  He showed me a copy of the letter (he’s also supposed to e-mail it to me but hasn’t yet) and we ended up spending much of the time discussing said progress.

And I really have come a long way in the last two years.  I can see how far I’ve come when I read through my blog archives.  I know how far I’ve come when I realize how well, for the most part, I’ve handled dealing with my parents and their divorce. 

Some of it has to do with less stress overall, having sorted out our finances.  But most of it has to do with finally working through the deep-seeded feelings I had from being a childhood cancer survivor and its resulting infertility.  I needed good counseling but I was terrified to get it.   Yes, there are things that happened as a result of NOT dealing with this issues I wish I could undo or redo differently but I think a lot of different pieces had to fall into place to land me with #5, who I was able to make the connection with to get through this stuff. 

My life is hundreds, no, thousands, of times better now.  It isn’t perfect but whose life is?  I feel blessed with what I have and look forward to what is to come.

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Adopting Again: Grant Application

July 27, 2008

I’m excited.  I made it to the second step for a grant towards our adoption expenses.  I’ve gotten a grant from the SAMFund before for my prescription expenses but since I’ve managed to whittle those down to generics at a manageable cost, I did not request it the last year.  I wasn’t sure if they would let me apply again since I’ve already been given grants from them and they don’t actually have adoption expenses on their list of categories although they do have fertility treatments but she said to go ahead and do the first step application.  I just received the notification today to complete the full application, which means an essay about my cancer experience, what being a cancer survivor has meant to my life, and how the funds would help me along with more in-depth financials and medical information.

Wish me luck!  We have the money we would need saved provided we have NO failed match expenses, so any extra would relieve some of the hidden worries that we won’t have enough money to do adopt again without incurring any debt.

And I ran across our Carter’s outlet having a warehouse sale.  I actually bought one newborn outfit in a boy pattern and the same outfit in a girl pattern for less than $5 each.  My first purchase for our future child!

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my evening

March 19, 2008

My evening was filled with:

A strep test

A flu test

A blood draw

A chest xray

and two breathing treatments.

3 hours later and all those tests later, I came home from the urgent care place with a diagnosis of a virus not influenza, a prescription for robitussin with codeine and instructions to follow-up with PH if I did not improve in the next couple of days.

Actually I haven’t been this sick in a long time. At first, I thought my symptoms had to do with the change in antidepressants but when I woke up with a throat sore enough that I have subsisted on popsicles, chicken broth/noodle soup, plain yogurt, ice chips and part of a milkshake because it hurt to swallow anything else and a cough that has had me in tears because my chest hurt so badly from it, I realized I was sick.  After 5 days, I decided perhaps I should call PH’s office but they had no appointments and the phone nurse recommended that I be seen. 

I fear for what this trip will cost me in deductibles and co-pays but I will say that the breathing treatments (and the 800 mg of ibuprofen they gave me) have helped me feel more comfortable.

I went alone, which in hind sight was probably not the best idea.  My blood pressure and pulse were really high, enough so they wouldn’t let me leave until it came down a little bit.   Feeling very sick with no “explanation”, a lot of tests, and a hospital setting triggered some panicky moments during the gaps where I was alone in the room.  I worked very hard at keeping myself calm, reassuring myself that they were NOT going to find anything seriously wrong.  The whole idea of having a chest x-ray just about did me in.  I haven’t had one in probably 10-12 years but they were a critical part of my follow-up treatment after Wilms’ to check for recurrence. 

And now I need to go to bed and sleep….

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25 Years Ago

February 24, 2008

25 years ago, I became a cancer kid after I was diagnosed with Wilm’s Tumor.

25 years ago, words and phrases like radical left nephrectomy, pediatric oncology, chemotherapy, radiation therapy, clinic, ANC, rads, actinomycin-d, vincristine, treatment protocols, side effects, hair loss, ovarian failure, stage III, National Wilms’ Tumor Study Group became part of our family’s vocabulary.

25 years ago today, my parents sat in a waiting room at Mott’s Children’s Hospital in Ann Arbor while I underwent surgery to remove the tumor and my left kidney.

25 years ago, cancer became forever entwined with my life story but so did the word survivor. 

I am a cancer survivor. 

Today I celebrate life.

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Prayer Requests

December 20, 2007

I have a few prayer requests today….

First is the family of Ellie, she lost her battle last night with neuroblastoma after a hard fight.  I’ve been reading Ellie’s blog feed for a while after someone posted her site on the Bethany forums asking for prayers.  Please pray for her family: Mom-Sarah, Dad-John and 5-year-old Ethan along with all those who have been touched by Ellie’s life.  I can only imagine how bittersweet Christmas will seem with the joy of Christ’s birth juxtaposed against their loss.

 Second is Judy, fellow adoptive mom blogger.  Judy just learned today that she has breast cancer, localized but advanced.  Please pray for her and her family (husband Frank and son Nate).  I am constantly amazed by her strength and support :)  

And last, is actually a family local to me as they go to our church (I only recently discovered they had a blog), Kristi.  Kristi has been battling ovarian cancer since January and went through surgery yesterday to reverse a colostomy.  She and her family are hoping she’ll be home for Christmas with their 3 children (Ashley, Nathan & Emily) but she is having some minor complications- elevated heart rate, low blood pressure and oxygen level. 

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Why??

November 11, 2007

Why am I angry to discover that I was randomized into a group that received double the abdominal radiation than the other group during my treatment?

I mean it was 25 freaking years ago.

It can’t be changed.

The infertility can’t be undone.

But, you see, I just found out if I had gotten into the other group, my fertility odds may have been much better.

Why do I torment myself by looking over my treatment records and then looking up research to see just what might have been different??

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Goodsearch (or Goodshop!)

October 21, 2007

I added a new button to my sidebar :)

Goodsearch is an online search engine powered by Yahoo! which donates money to a specified charity.  I have preset the link for the SAMFund  which is the non-profit group for survivors of childhood/young adult cancers that has given me a grant the last couple of years to help cover my prescription costs.  Every search you do using the Goodsearch site, you help donate money to the group.

Goodsearch also has created network of online retailers who will donate a percentage of purchases to charity.  So for those of you who are online shoppers, if you hit the Goodsearch site first and then click on their links to some of the many retailers (including major stores like Target, Amazon, Gap, Barnes & Noble, Macy’s, Old Navy, Apple, Circuit City), then you can “feel good” about your online purchases since you are donating to charity too :-P

Cool, huh?