Tuesday, February 10, 2015

Pregnancy and Glioma Don't Mix

I want to share why this panel, this invitation to join the premier of Surviving Terminal Cancer, is coming at the perfect time. For the prior month I had been processing the loss of a perceived future. Let me explain. From the beginning of my treatments, Dan and I have always planned on having babies as soon as the treatments concluded. It was a goal, a reward, a carrot dangling to work toward. I have always wanted to be a mother. It has been a dream to fall in love, to create a life, to carry a baby, to birth a baby, to have a family. And I treated it like it was a given. I thought my only issue was to eradicate the cancer cells from my body, to have several years of clean scans, then I was good. But it turns out, after some research, that it isn't that simple. That cancer will never go away, even if my body seems clean and clear and strong and capable.

When I started looking into it I found out that pregnancy absolutely correlates with recurrence. Obviously it isn't a given, that it would cause me a third tumor, so we could risk it, but it's so scary! It's gambling with my life, I feel like our dream is crushed. So over the past two months - since we researched - we've been absorbing the information, and essentially I've been in a state of grieving. Like I said above, I'm grieving our perceived future, the life I thought we would be able to live. Because I have had this dream my whole life, since I was a very, very little girl, it will take a long time to process the reality that my life will not be what I want it to be - even if I'm healthy. Even if my brain tumors never come back. It's painful, and incredibly sad. I go back and forth between reluctant acceptance, and reminding myself that I am just lucky to be alive. But it's hard, because if I live a long life, and it's without children, what will it look like?

One of the main reasons why I hesitated, and saved this information, is because I didn't think I could handle the obvious statements that I was sure would come. Like the, "You could always adopt." Or "There's a lot of children than need happy homes." Or, "At least you have your life." Of course, those are all the thoughts that I tell myself people could think and say, and that's because I think them and I tell them to myself. And it doesn't change things, or make me feel any better. It actually makes me feel worse.

This panel is the perfect distraction for me. I need other things to think about, a bigger cause. I need to help others, and get out of my own story. Cancer is such a nasty, nasty thief. And just when you think it can take no more, it does.

Here are a couple of studies linking pregnancy with low grade glioma:

"Furthermore, on the basis of these four case reports and other reports from the literature, women with low grade tumors need to be counseled on the risks associated with pregnancy and, more specifically, the potentially increased risk of tumor progression and transformation."
Tumor progression and transformation of low-grade glial tumors associated with pregnancy 

"The present case highlights, for the first time, the unfavorable evolution of DG during pregnancy in six of the eight reported cases. It thus suggests a possible negative interation between pregnancy and supratentenorial hemispheric DG." - Influence of pregnancy in the behavior of diffuse glioma: clinical cases of a French glioma study group (see below)



It was hard for me to write this post, but I felt that it was important for me to share the dangers of pregnancy regarding glioma. I only researched for my type of brain tumor, however in the studies that I read (I only posted two, but there are more if you chose to research further) it referred to other types of brain tumors and it seems as if there's a correlation across the board. Obviously, I'm not saying that brain tumor patients shouldn't get pregnant, however you deserve to know all of the information so that you can make an educated decision. This is, after all, our lives at stake - I mean, good grief, many of these women who became pregnant had evolved grade tumors. Some died within months of childbirth. Risky stuff. Now, I realize that these are all case studies, which make it difficult to assess, since it isn't a clinical trial with a control group. However, it's clear that a clinical trail would be unethical due to the high probability of recurrence and subsequent health risk.

Oh cancer, why do you take so much? You just take, and take, and take, and take. And all the while people look at me and think I'm doing so well, that things are back to normal. They don't see all of the complications, the things that we continue to go through. That it never ends. As if the fear of recurrence, of death, wasn't enough. Man, this life can be a real test in patience, in sanity, of loss, of strength. It's as if we're being asked, how bad do we want to live? Can we overcome all of the trials? Can we stay human, and happy, and functioning, and thriving even when cancer continues to bomb our village? I think I can, but sometimes it's okay to just mourn this life, too.

11 comments:

  1. Oh. My. Gosh! You are such an amazing person with the coolest outlook on life. I really enjoy your blog and look forward to your entries. I volunteer at a cancer hospital near where I live (City of Hope) and see the struggles the patients and families go through. I have so much admiration for you and your resilience is amazing.
    Wondering if you would ever consider asking your husband to do a post? I sometimes wonder how or if your situation affects him. He sounds like a strong and very supportive husband. Lastly, I'm sure you both have already thought of this but I will ask anyway. Have you ever considered a surrogate? I too feel sad that you may choose not to be a mother for fear of reoccurrence. I completely understand but always know that any little one would be so very lucky to have you as a mommy! Hugs!!

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    1. Patty, you are an incredibly kind soul, I wish I could hug you! Thank you for volunteering at City of Hope, I can only imagine it must be bitter sweet. It's a very special person to do what you do! I texted Dan (he's at work) sharing your suggestion, which I think is briliant! I always love hearing his take on things, which has a unique twist since he's got a different role and perspective on stuff. When we were researching and realizing the dangers we ultimately started troubleshooting which included checking out surrogacy, but standard it requires IVF to harvest multiple eggs, and IVF has inherent cancer risk as well. There are natural IVF centers but they're rare and very labor intensive. Then, if I'm understanding the procedure, the surrogate has to take quite a bit of hormones to carry the baby and those have inherent risks to the surrogate. So if we were to use a friend, or family member, or stranger, I couldn't live with myself if anything happened to them. Even if they said they were comfortable risking it. It could be like passing the burden of cancer. Oh God, the thought makes me sick. Behind the issue of health risk for the surrogate, is the cost. There are so many things telling us that we aren't meant to have a little baby Danny, or a mini Jess. But who knows, maybe someday we will foster or adopt. Since there's no window of fertility, at least there's no timeframe for those options; we can lick our wounds for awhile. :)

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  2. Hello, my sister (age 30) asked her doctor if she could have a child. He said most of his patients that had babies had a recurrance...well you cant risk it. I told her at once that i would give birth to her child!

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    1. Thank you for sharing that, it is so important for us to share information so that we can understand all of the nuances of this disease. I really appreciate you. And I think you're a badass sister!!

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  3. No words other than I wish we could take it all away. Cancer is a thief. The worst thief. Sending you light, love and a big hug wrapped in sunshine. Hang in, my love. xoxo

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  4. My heart aches for what is takes from you and all those affected. Thank you for sharing even when it is painful, scary or heartbreaking for you...you are an incredible gift to this world and I love you dearly!!

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  5. Hi Jessica - I wanted to comment but dont to post publicly. I sent you (I think) a message on facebook. It might be in your "other" folder since we aren't friends.

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  6. Girl, this is Rachel in Baltimore. I wrote this long ass comment just now and somehow it didn't publish. But the gist was that I am so glad you shared this, my friend published a similarly heartbreaking post yesterday and I am just so glad you are both brave enough to share your grief and your loss. You don't have to go through it alone. I grieve with you for your loss and am sending you so much love. You're amazing. Keep doing what you're doing.

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    1. Thanks Rach, now hijack the other Jess and get over here. We'll hunt for native mushrooms over in the Olympics, then go for a bike ride. You can take the handlebars, and Jess can have the back pegs. I'll pedal.

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