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.

 

 

Advertisements
Leave a comment »

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.

 

 

 

1 Comment »

Good News Day

It’s funny, I’ve been going along, focusing on life in chunks.  If I can make it to bedtime.  If I can be there for the kids in the morning.  If I can make it through this conference call without puking (there was a very unfortunate instance while I was on the phone with the entire executive committee).

For me, cancer has tightened my lens.  On rough days, I focus on the next hour, something small and manageable.  On good days, I plan to take the kids to the park or to see the animals, but don’t think of anything outside of managing the next three hours.

I don’t make any plans for two weeks out, I just don’t know what life will be like then. So why is the funny?  My lens suddenly shifted when it was time for my PET scan.  It’s pretty standard for ABVD Chemo to do a PET scan after 4 treatments (2 rounds) to see how you are responding. Honestly, until it was time for my PET scan, I hadn’t even worried about how I was responding, my focus was simply on taking life on day at a time and making it to the next treatment.

As soon as they mentioned the PET scan, anxiety and worry came in.  And then they dropped the ball that I would have to wait a week for results.  Every minute felt like a day. It was hard to sleep, I was so anxious to know the results.

While, I don’t write about it all the time, I’ve poured over medical studies and know the odds.  80% of people of my stage come back with a negative PET scan at this point, 20% don’t, and 2.5% show little to no response and are considered refractory, which is very difficult to treat. If you are in the 20%, your rate of recurrence of Hodgkin’s is significantly higher. I wanted desperately to be in that 80%.

I’m willing to do whatever it takes to beat this, but I’m also ready to be done.  I’m tired of being a crappy mother who is sitting on the stairs instead of pushing her kids in the swing. I’m tired of making them cry when they see me puke, or seeing their faces drop when mommy is too tired to do something. I want to go back to being able to remember things and feeling like I really contribute something to my company and my job.

Everyone has been so wonderful and we have so much help, but I miss being me.  I want to go on a date night with my husband. I want to be able to stay up late enough to watch a TV show after the kids go to bed. I want to take my kids berry picking, to the Zoo, out for breakfast.

I want normal.

PET SCAN CAME BACK NEGATIVE

I still have to finish four more chemo treatments (2 cycles) and radiation, but I’m a little more hopeful that normal is out there.

2 Comments »

You might be undergoing chemo if. . .

Chemo is boring. I was expecting more. More drama, more symptoms during it, for the people getting treatment besides me to look sicker.  Just more. I’ve officially had five Chemo’s now and, well, Chemo day is a bit of a snoozefest.

It’s the days after that bring the not-so-fun.  Here is my fun list of ways to tell if you are undergoing Chemo (as if the five hours hooked to an IV getting tons of poison injected into your body wasn’t telling enough).  What fun things would you add to the list?

You might be undergoing chemo if….

  1. You redefine biker chic with your stylish chemo beanie.
  2. Four-letter words are no longer the dirty ones. Three-letter ones like ANC, WBC, RBC, MCV, and MCH are.
  3. Eighteen hours a day is your optimal amount of sleep. And you can fall asleep standing up, in the shower and at the dinner table (mid-sentence into a pile of spaghetti).
  4. You’re pretty sure you know what swallowing a taser feels like. (But you are way too smart to actually DO this to compare mouth sores to swallowing a taser.)
  5. Orange juice and green olives is your favorite food combination – because the crazy appetite from steroids combined with the weird taste issues from chemo make for very interesting bedfellows. Trust me, you will regret consuming this combo EVERY time.
  6. You entertain fantasies of sawing your legs off from the hip down, just to see if it’s less painful that way.
  7. You sleep with post-its on your face, your mirror and your fridge, because you ask the same question three times in ten minutes and still forget the answer. Chemo brain is REAL. And the reason I keep consuming OJ and green olives is that I forget how the gross the combo is every time.
  8. You have sub-classified the types of vomiting, because one word just doesn’t give you the layer of nuance you need to describe how your day went. And you TALK about vomit and poo. Because body fluids are a big part of your life, and sharing your day is an important way of connecting with others, right?
  9. Attempting a BM feels like a feat of bravery worthy of a Congressional Medal of Honor.
  10. You take a picture of your poo when you finally manage to go, because dammit, it’s worth celebrating!

 

Leave a comment »

Which is worse? Cancer or Infertility?

One study of 200 couples seen consecutively at a fertility clinic, found that half of the women and 15% of the men said that infertility was the most upsetting experience of their lives. Another study of 488 American women who filled out a standard psychological questionnaire before undergoing a stress reduction program concluded that women with infertility felt as anxious or depressed as those diagnosed with cancer, hypertension, or recovering from a heart attack. – Harvard Health

I heard many sentiments similar to the study above when we attended support groups for infertility, but I’ll admit, it seemed hard to believe. I’m here to tell you it’s the truth, at least for me.  Some of this may simply be a matter of what came first.  Infertility was the first battle this type A could not finagle her way around, or circumvent.  It took all of my strength, research abilities and resources to find our family.  I couldn’t stop the miscarriages, I couldn’t make myself get pregnant.  

The impact that had on my life, my friendships, my family relationships is hard to quantify.  The experience forever changed me, and changed the very core of who I am.

Cancer is quickly shaping up to be  the same.  Yet, it’s a little easier. I’m familiar with not being in control. I’m familiar with pouring through medical research. I’m familiar with peppering doctors with questions and researching side-effects of drugs.

So far, cancer treatments are also easier than infertility treatments were- in terms of quantity:  it’s fewer doctor appointments, fewer heartbreaks, fewer disappointments and far less money.   That’s right folks, cancer is going to cost me about 1/5 of what our adoption did, and about 1/10 of what it took to get our girls. This is part of why cancer is not as stressful.  So far, we aren’t worried about having to sell our house, having to sell a car, having to make some really tough choices.

And yet, this may change.  Right now the path seems straight forward with cancer. Finish the treatments, kill the cancer. And yet, it doesn’t always work that way.  If my PET scan shows activity in the next couple of week, I may retract these words, but for now Infertility is far worse than cancer has been. Even with the horrible side-effects from cancer. Because I can tell myself they are temporary.

Statistics are on my side.  For infertile couple the national success rate for IVF hovers around 40%, the clinic we ended up at was closer to 60%.  The chance my doctor quoted of me surviving this cancer is 97.5%.  I’ll take those odds.

What makes infertility so much harder than cancer?

Almost everyone is supportive when you have cancer.  It seems like everyone knows someone who had cancer, they are familiar with chemo and radiation and they offer to help. There are also far more resources for people who have cancer. Livestrong, Cleaningforareason, Susan G. Koman. Cancer is an ugly, terrible disease that impacts far too many.  And everyone has rallied to find a way to cure it.

These same voices were silent for the most part as we underwent infertility treatments, or even when I was on bed rest through my pregnancy.  Not once, did someone say, “When can I bring you dinner?” “Why don’t I help you mow the yard.” I went to the doctor 3-4 times a week, constantly had shots and mood-altering medicine and most treated it as if I was just having a lot of sex.  That couldn’t be further from the truth.

Infertility is clinical, invasive, painful and involves a ridiculous amount of needles.  Some of it is simply unfamiliarity.  Infertility is not spoken of as often, it’s often treated as a source of shame or blame. It took our families a long time to see  the strain infertility put on us emotionally and financially.  When I was on bed rest, it simply didn’t occur to people that my husband was visiting me every morning and evening and still taking care of the dog, the house, cooking meals (so I would eat) and getting the nursery ready.  Very few came forth to help during that time. I was on bed rest for five months, and few visitors darkened our doors.

You get far fewer offensive sentiments offered to you. “If God wanted you to have a baby, you’d have one.” This one riles me the most, it implies that God is punitive.  That he deliberately chose me to lose three babies because of something I’ve done.  I don’t believe that. Others simply share stories of people that kept trying and one day got their miracle baby.  It does happen, it depends on the root cause of the infertility.  As I’ve said before infertility is not the same thing as sterility, there is a small possibility.  7% of infertile couples who forgo treatments do get pregnant on their own.  Yet no one felt the need to share the stories of the other 93% who weren’t able to get pregnant without help.  Their stories are far greater and yet they were silenced by lack of support and heartache.

It’s just a matter of life and death. This one may seem strange, but because I don’t feel like I’m dying, I’m simply not worried about it. With infertility it was my entire future at stake, it was my hopes and dreams. I worried every second of every day, that I would not find a way to have children.

While I have no plans to leave my husband and children behind, if treatment doesn’t go as planned, I can find contentment in the fact that I have a husband and children who will survive me. My greatest hopes and dreams are part of my life each and every day.  They are the reason I fight, they are the reason I will win.  If my family is my reason for living, imagine not having that taken from you.  That is why infertility is worse. It takes away the life you dream of.  It robs you of your joy.  Cancer can’t do that- not to me.  I have too many blessing in my life to be thankful for.  My children remind me to smile and have fun even as I go “blech.”

 

 

Leave a comment »