Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

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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Still Here

I’m not dead.  Just thought I’d throw that out there since it’s been so long since I’ve posted.  I had good intentions when I revived the blog upon receiving my diagnosis.  What I didn’t account for was the level of fatigue and ridiculous amount of energy it takes just to get out of bed, work and take after my kids when my body is at it’s lowest.

To catch you up on my story, I finished chemo after a bit of a scare, I had a sinus infection that went out of control due to my neutropenic (barely any white blood cells to fight infection) state.  I went from not feeling well to barely speaking and burning up with fever within a day and ended up in the hospital for several days. That experience scared me quite a bit, because it was the first time I truly feared for my life since beginning treatment.

Once we got that little scare out of the way, it took me a while to ramp back up and finish my treatment. The final chemos seemed anticlimactic after that.

Then there was a glorious break, a three week break between chemo and radiation when I began to feel human.  I was finally able to take the kids a few places by myself.  My family and in-laws have been taking them to do fun things most weekends for us and daycare handles them during the week for most of the day.

It seemed like everything had taken a turn and I was in the home stretch.  I went for my radiation consult, got fitted for my mask and was scheduled to start treatment.  That’s when the wheels fell off. I received a phone call the day I was to begin radiation treatment- “We need to talk, there are complications with your treatment plan, and you have some choices to make.”

When I called him back, I found out that given the placement of my tumor, he couldn’t proceed with radiation. There wasn’t a way he could configure the treatment that was within acceptable levels of radiation to my heart and lungs. Queue freakout.

 

 

 

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