So, there has been all this talk about Fiona and her cancer. Since it's the 23rd anniversary of my cancer diagnosis, I figured I would share my story with you guys. It was Easter weekend so many years ago and the day before Easter I went to the bathroom and when I went to flush it there was blood in the toilet. I went and got my mom and she immediately called our doctor. My dad was with my brothers at the barber shop and she called for them to come home. We went directly to the ER and had all sorts of tests, including my first pelvic, yeah me.
By the time the night was here, they had figured out there was something in my kidney that needed to come out. They called it maybe a cyst, I don't remember the word tumor being used, but I am sure it was. The next morning was Easter. They were going to try and get the surgery that day, which meant I couldn't eat anything, just sit there and stare at my basket. In the early afternoon they came to prep me for surgery which included a shot in the fanny, I was 9, getting up there in the modesty department but I wanted to squeeze my dad's hand when they did it.
I fell asleep while the grownups were talking and woke up to pain and an incredibly dry mouth. They diagnosed me with a Wilms Tumor Stage I. They were starting a new study that would randomize me into 10 weeks of chemo or 6 months. Or I could just take the 6 months. My parents asked me what I wanted to do. Kind of wild that they were asking me. I told them I wanted the 6 months because I didn't feel good about the shorter time. It turns out that I had stage II and the 10 weeks probably wouldn't have been enough.
They started the chemo there and about a week after I was admitted I was released. I had weekly chemo visits to the doctor for the next ten weeks. In May, I had another 5 day course of the really nasty stuff that caused me to throw up, alot. Later in May I was admitted for dehydration. I had gone from 79lbs to 63lbs in just over a month. I spent that time in the hospital watching daytime TV and eating plates of bacon, literally. My hair had fallen out. I couldn't hardly walk because of the weightloss and later toxic levels of one of the chemo drugs. I had another nasty round in July and then nothing until October. By then they had figured out a anti-nausea drug that would work for the nasty stuff and I was slightly miserable during that time.
This was back when cancer was more of a shameful thing. The overwhelming support and condolences we have gotten for Fiona was nothing like what happened to me. I absorbed some of the thinking and as I got older I would refer to it as the time I was sick. I developed some PTSD, I couldn't stay the night away from my home. While I was hospitalized those few times, I was alone at night. They would sedate me during the day in a vain attempt to stop me from throwing up. My mom would have to roll me over to let me barf. But I would be awake most of the night alone in the hospital.
I used to call my mom on this day to talk about it, but she asked a few years ago that I not call. What a difference in our views. I can't wait to call Fiona every August 19th and tell her how grateful I am that we found her tumor. The sooner we found it, as we did, the better it was for her.
I don't know if any of these experiences made it so that I react so poorly to pregnancy hormones. Having such difficult pregnancies has put a strain on my only kidney and that's why we can't have any more. After them pouring such awful poison into my body before puberty, I can only be grateful that I have the two girls I have. I wasn't sure if I would have any. None of this is the reason for Fiona's Lymphoma. I am still followed by a national study and they recently sent a list of birth defects that can be seen in children of Wilms tumor survivors. Lymphoma wasn't one of them.
PS, I found a picture. I sure am jealous of Fiona's hat party, I only had a couple of hats and a couple of scarves. Of course, I am not the Fancy Nancy she is, I don't know if I could've worked the leopard print hat.
7 comments:
Wow. Thank you for sharing your story. I hope Eric will want to talk about his cancer as an adult.
It's is truly amazing how far society has come in the last 20 years. I'm glad for our kids that there is so much support.
Loved the glasses. I had some just like them!
Thanks for sharing your story. I remembered some time ago you mentioning you had cancer as a child, and I've been curious. How strong you must be! And what an example to your girl. I'm glad things have been easier for her in the support department.
I've always thought it sort of a cruel irony that you are going through this with Fiona after what happened to you as a child. But after reading this, it occurs to me that caring for her might help you heal some of the wounds, as you care for her the way you wish you'd been cared for. I'm sure you've thought about that. As tough as it is, the great news is that you came through it and she is doing the same.
Sorry your mom isn't more supportive. I am so glad that you have a wonderful husband and girls that love you -- my own mother didn't have a very nurturing childhood, and when I asked her if that bothered her, she said that the only thing she could control is the family she has now. She has created the nurture that her own family lacked.
I don't think I've ever heard your entire story. Thanks for that. I'm sure there is even more to tell, huh? You have been through so much. I bet you consider it a blessing to know what your daughter is going through. But as an "outsider" I think, "This is so unfair! Why do some people get all the worst luck?"
I'm sorry that your mom doesn't like to talk about it. Maybe she has PTSD? Just know there are plenty of people who love you and would chat with you forever!
Oooh, I love liz's insightful comment about your mom. I think she's right on.
When Lillian started getting symptoms, I did an online search and discovered that it may be a brain tumor. My hubby's mom died of a brain tumor 10 years prior and I thought surely our family couldn't go through that again. Since my daughter was adopted, there was no genetic or environmental connections. (Isn't it funny how we feel we have to rationalize this???) But there we were, reliving the nightmare.
I still don't understand how or why lightening struck our family twice. And I don't understand it for you either. But one thing is for sure, Fiona has never spent a night alone in the hospital. She has super cool hats. She has a mommy who completely understands and knows just what she needs. I wish neither of you had to endure cancer. But if God had to pick a mommy to walk with Fiona during this battle, He made the perfect choice.
I'm so glad that perception has changed for Fiona. It still stinks that either of you had to get cancer. It is just unfair that children have to get horrible diseases. But she has you and seems to be well on the road to wellness.
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