Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Grief

Grief is strange. My grief is deeper and broader than the ocean, and it’s as if my mind and body know that it is far too much for me to bear. I feel as if somewhere inside,  my mind has attempted to put a dam on the Ocean of my grief, but it’s an impossible task.

You can no more dam grief than you can stop the tide. With any loss, it is inevitable. And yet, I cannot comprehend the enormousness of what I have lost all at once. I feel as if the last ten years were based on lies and misinformation. I question our life together. Was he ever really happy with our life? Was the infertility and cancer just too much piled on to previous difficulties, or was it getting laid off that was the final straw?

I weep for the future we won’t have and the memories my children won’t have of their father. My children are 5, 5, 3, and 1. The twins may remember a couple of vacations, and I’m hoping the 3 year old remembers a little. I know the baby won’t.

If I wasn’t enough to live for, why weren’t our children?  That’s the part that I’m not sure I’ll ever understand. I never questioned going through a single part of chemo or radiation because it was simply what I had to do to be here with my family. It was the price I had to pay to get to live longer. I wanted to live to see my babies grown. Why didn’t he?

There are too many thoughts intermixed with the sadness. I miss the jokes, the hugs, the partnership. I can’t think of everything or I’ll be sucked to the very bottom of that ocean. Instead I have to grieve in parts in pieces. So my mind created the dam.

There are days where I am walking and talking and seem just fine, but inside the tide still rolls. Out of  nowhere there is a tide of sadness, or rage or despair that rolls up in a wave over that dam and takes me by surprise. Sometimes it’s a song, or word that triggers a memory. The memories are still more painful than comforting.

I cry in the car, in the McDonald’s drive thru, on my lunch hour, in the shower…. The numbness has worn off, and the dam seems to be lowering as if knowing I need to fully grieve Tim’s loss, and judging me more capable now than I was at first. I miss the life we had, I miss the life we should still have, and I hate having to explain that Daddy is dead everyday to a three year old who just wants bedtime kisses from his Daddy.

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A place in hell

I don’t believe everyone who commits suicide goes to hell, but after tonight I certainly hope you at least make a pit stop there.

After hearing your son talk all day about wanting to fish and hunt just like daddy, and then end the day in tears crying for daddy, you deserve to be there. 30 minutes of crying his heart out for you.

He idolized you. How am I going to teach him these things. I can perhaps forgive you choosing to leave me, but your choice to leave your children this way is unforgivable and selfish.

They loved their perfectly imperfect daddy.

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The hardest thing I’ll ever do.

As a child, the hardest thing I ever had to do was:

… get on the school bus with a complete stranger
… speak in public for the first time
… hear the word divorce
… say goodbye to my best friends

As an adult, hardest thing I ever had to do was:

… hear there was no heartbeat
…allow myself to be stuck with needle after needle
…go to the hospital and leave without our baby girls
…bleed for months on end, laying it that bed, praying our babies would make it
…rock two colicky newborns all night long
…walk into that hospital not knowing if I’d leave with a son
…say I had Cancer out loud
…hold out my arm for that first IV.

No.

Now I see those weren’t really that hard at all because you were by my side, doing whatever was needed, being my shoulder to cry on. It turns out the hardest thing I will ever have to do is:

…get out of bed and face the day without you by my side
…walk into the kitchen to cook breakfast, when you should be standing there
…go to bed alone, never again to cuddle up against your side

No.

The hardest thing I’ll ever have to do is:

…to explain to our children why you aren’t here
…to make sense of what you’ve done
…to understand why you didn’t fight to be at our side.

No.

By far, the hardest thing I’ll ever have to do

….is to forgive you.

I love you.

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Gone

A single snowflake falls.

The mighty oak doesn’t even feel it’s weight.

Winter brings more rain, more ice, more snow.

The smaller trees begin to break under the weight of the snow.

The mighty oak continues to stand proud as trees around it buckle.

The next ice storm downs a medium size tree, who helplessly falls under the weight of the ice in it’s branches.

The mighty oak continues to stands tall in the promise of spring. But even for the mighty oak, the winter has taken it’s toll. The ravages of the rain, the snow and the ice are there, but unseen.

A single snowflake falls.

The mighty oak falls too.

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Frantic

I think I had been exisisting on cruise control until they told me my radiation was canceled.  It is so difficult to stay mentally engaged while undergoing chemo and radiation.  Even though I’m medically experienced, used to navigating insurance and can interpret medical studies, I must honestly say I think it’s almost impossible to make informed decisions while on chemo.

It’s just too difficult to think.

The questioning part of my brain has become mushy, my edges are dull.  That’s why I was frozen when they first broke the news.  What did this mean?

Our rad doctor suggested that we meet with another radiation doc to see if the breath-hold method of treatment would work. This meant another scan, another mask and this time I brought my husband. He  had wisely written down the list of questions as we discussed them over the course of the week.  He had helped research ad naseum, so that we would know what questions to ask. Mainly he was there to bring up all of the items I would, if I were my normal self.

It was also time to pull out the second opinion card.  Any doctor worth their weight will tell you get a second opinion before starting treatment for cancer. What’s at stake is just too high, and it’s important that you have faith in your treatment plan.  My diagnosis was pretty vanilla and we chose not to get one with chemo because my treatment plan was textbook, but I had this option in my back pocket.  Now was the time to use it.

My medical experience came in handy here.  I called MD Anderson and had a phone consult lined up within three days. We had an on-site visit within in the week.  There are some benefits to speaking the lingo and knowing where you stand on coverage and deductibles. Another option was out there- proton therapy.  I attempted to research this, but was frankly, unsatisfied by the answers I was able to find.  There weren’t any published studies I could find on the long-term outlook for lymphoma.  The treatment was simply too new. It was impossible to compare efficacy and relapse rates.

Everything I could find on proton therapy looked promising though – fewer side effects, thought to have fewer long-term effects, lower total radiation dosage, and  more targeted area being treated.  My one hesitation is that most of what I could find was marketing material, not scientific studies. My husband was really excited about the proton therapy, but I wanted a comparison and recommendation between that and breath hold from a doctor that did both.  That’s where MD Anderson came in.

It was a very short meeting.

The MD Anderson doctor was very frank and stated breath-hold was the way to go.  Newer studies were showing the limitations of proton therapy for lymphomas and it mattered greatly how your initial tumor was positioned.  Given the specific placement of my tumor in relation to my heart and lungs, proton therapy would actually give a higher dose to my heart instead of a lower dose, which was the goal.

We asked a ton of questions about both treatments and after about an hour of hand-drawn charts and examples, my husband and I had full confidence in my treatment plan.  The doc at MD agreed to consult with my local rad onc so that I could be treated locally. In fact, they had already been corresponding about ways to tweak my treatment plan to limit radiation to my breasts, heart and lungs.

You might wonder if the trip to Houston was worth it, when we got the answer we already had. It was. The second opinion gave us peace of mind.  If I have complications from the treatment, five or ten years from now, I need to be able to look back and have zero regrets over the choices we made.  God forbid, if I pass because my heart gives out from the radiation, I need to my husband to have peace of mind that we chose the very best option out of those available to us.

Sometimes it’s about making sure you have no regrets.  That’s why we decided to do our final IVF in Colorado (and are ever so glad we did!). That’s why we boarded a flight to Houston to hear from another doctor, a specialist in lymphoma, radiation and proton therapy.  It gave us the confidence in my treatment to go forward.

 

 

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