Chapter 8: do what’s right for you

Mine. The tiny newborn snuggled up on my chest was mine. Her smell was intoxicating to me – sweet and milky. Her sweaty little cheek smooshed against my sternum as her even, hot breath on my skin indicated she’d fallen asleep. My brain contemplated the options: hold her, and let her become accustomed to sleeping on me, or put her in her crib. The books and most of the internet are in favor of the latter. Encourage independence, let them sleep alone, teach them early to put themselves to sleep.

“Brandan, I don’t want to put her down.”

My husband looked up from his work with confusion. “Okay… then…don’t?”

“I probably should though, or she’ll never learn to sleep on her own.”

He considered this logic, then shrugged. “She won’t be sleeping on your chest when she’s in college.”

I laughed. Great. “I can probably handle this for 18 years.”

He smiled at us. I wonder what we looked like to him, my messy hair and tired eyes, her pink cheek glued to my chest.

“She’s your daughter. You can hold her if you want to.”

I considered his words, nodding my head. I didn’t get up and rush her into a crib in a room by herself. One hand under her tiny little bum, the other gently resting on her tiny little back. He was right. She is mine, and I can hold her.

 

Week old Ginny

 

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It’s weird to think I needed permission for that. I needed permission to choose how to parent my daughter. I didn’t have to listen to what my friends or family thought was best, or what books thought were best… in fact… considering the circumstance, I knew what was best. This experience grew into the motto that got us through the first year of Ginny’s life: We do what is best for the whole family. And you know what made me happy and got my growing little girl more sleep? Me holding her. And now that I look into my future, unsure of whether I will ever be overwhelmed by that intoxicating smell again, I am thankful for every second I held her in my arms. Every. Single. Second.

 

Let’s talk about prognosis.

 

There are two ways to look at it. The way most people look at these numbers is “Wow, those are great numbers!”. Then there is the way I, and probably my husband, look at these numbers. “Wow, I shouldn’t have to worry about these numbers.”

SURVIVING DIFFUSE LARGE B CELL LYMPHOMA

The chance of surviving DLBCL depends upon many factors. The following factors are known to reduce the chances of survival:

  • Age older than 60
  • Lactate dehydrogenase level higher than normal.
  • Stage III or IV disease 
  • More than one involved extranodal disease site

A scoring system, known as the International Prognostic Index (IPI), gives one point for each of the above characteristics, for a total score ranging from zero to five, representing three risk groups [1]:

  • Low risk — IPI score of 0 or 1 (91 percent of people in this risk group are still alive at three years)
  • Low to intermediate risk — IPI score of 2 (81 percent of people in this risk group are still alive at three years)
  • High to intermediate risk — IPI score of 3 (65 percent of people in this risk group are still alive at three years)
  • High risk — IPI score of 4 or more (59 percent of people in this risk group are still alive at three years)

So looking at that first list, I am younger than 60, my lactate dehydrogenase level is normal, I am in generally well health, and only my lymph system is involved. I am Stage 3 though, so I have one negative factor. That puts me at low risk. So there is a 91% chance I will be alive in three years.

 

Just typing that pisses me off. I shouldn’t have to divide my life into three year segments.

 

But < sarcasm> lucky me! < /sarcasm> I have other numbers to think about. Because it isn’t just about beating cancer the first time. 1/3 people with this disease will relapse. Most of the recurrances happen within two years. A recurrence is typically considered fatal and turns into a management scenario, as it is nearly impossible to cure at that point.

 

So that’s what I’m facing. With all likelihood my cancer will be gone (or… mostly gone… another terrifying scenario) before my daughters birthday. But then I have a 33% chance that the cancer will come back. Right now we are doing short term planning. What will we eat for lunch? What will we do this weekend? Do I have enough energy to do the dishes? I can’t think about next week, or next month, or even next year. But I’ll get there, and then I will have more mental gymnastics to conquer. When can I think about two years from now?

 

When can I start just living my life?

 

When can I think about having another child? This information would’ve been exciting, but we had planned to start trying for another child this summer, after Ginny’s birthday. That plan is gone. It’s not even in the same room as the table. Do I wait a year? Do I wait two years, which is when most relapses occur? Maybe five years. Supposedly 97% of recurrence happens within 5 years. But will I want to have a child then? Put my body through pregnancy at that point? Will I have enough energy for a second child?

My life plan is out the window now. It’s just a bunch of questions I can’t answer anymore. My life plan is the most basic of plans: live.

It’s easy for some one else to look at my life and say “You can’t let this control your life.” And you would be right. I should, but I think it impossible for people to understand how paralyzing these numbers are.

If you’de like to read some of the data that leaves me feeling sick to my stomach, click here. Then imagine those numbers are your life.

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My fingers hover over the keyboard. How much do I write? How much do I explain? How much is worth explaining?

 

Thanks to the support and encouragement of my sweet neighbors I sought a second opinion from Dr. Elaine Jaffe at the very beginning of this journey. She is the leading Lymphoma pathologist/researcher at the Center for Cancer Research, National Cancer Institute (which is a part of NIH). Despite the debacle with my first oncologist I received a personal e-mail from Dr Jaffe with my results (which I forwarded on to my new and improved oncologist).

It’s a lot of information. I read it, then re-read it. Then I google something. Then I read it again. I guess I’ll share what I understand:

Diffuse Large B-Cell lymphoma is a mutated form of Follicular Lymphoma. Less than 30% of Follicular Lymphomas transform into Diffuse Large B-Cell. So that’s interesting.

I’m still trying to figure it out. Apparently my FISH score being negative is a good thing though. Who knew?

 

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My doctor appointment today went well. Blood draw, weight (still the same), review of blood work (good), a little tummy massage (nothing special), and my vitals are fine. I’m clear to start my next cycle of chemo next Wednesday (Feb12).

On that note, I start chemo again in one week.

My hair has started falling out. I spent two days collecting it in little balls, ten strands at a time. It was kind of therapeutic. I’ve been waiting for real side effects. It sucks to lose my hair, but it means the chemo is working. I see that as a good thing.

I got my haircut on Wednesday. The long strands are messy, and will clog up my drain. The short strands blend in with the dog hair. My brain likes that.

  

 

 

 

 

 

 

 

 

 

 

 

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I am doing better than I expected.

I’m trying to stay positive.

I’m sleeping better.

Some nights I cry myself to sleep in Brandan’s arms.

Sometimes I think I can contain the bad things to the night, and then I have to face reality and do scary things during the day.

Ginny keeps telling me my haircut is pretty. Then she says “I love you too Mommy.” I love you baby.

 

 

6 Comments to “Chapter 8: do what’s right for you”

  1. I love you Jessica and we are here in GA thinking about you! We are going to try to plan a trip to get up there sometime soon for a visit! If not Patrick, at least the little man and me. :)

  2. Thank you for your honesty and for sharing such personal and challenging experiences you’re going through. You’re post has inspired me to hold my children more, play with them more and not worry about my house as much or to worry about what others say about how to parent. Thank you Jessica for writing this. I will be praying for you and your family. Ginny is a lucky girl to have you for her mommy.

  3. Thinking and praying for you. And also, your new haircut is hot!

  4. I’m sure this is all very scary and frustrating. Trust that God’s plan for you is the right one – which includes lots of love and support from your family and friends. Let us know what we can do.
    L+S

  5. Love you, I pray daily for you to get well quickly, I pray for God to make your life easier and for all tumors to remove themselves from your body. I had long hair too before my chemo and did a short haircut, mine was not as short as yours, but I have peach fuzz coming back and my chemo isn’t over yet…funny how little things can be so exciting. I think my hair has decided to come back white though…that will be a change… you are doing so well to be so brave through all of this information overload… but it is so important to understand and question everything…

  6. Oh my heart breaks. I’m praying for you. And thanking you for sharing your words and your experience.

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