Stages and Statistics

"In God we trust.  All others [must] have data."  

     - From The Emperor of All Maladies A Biography of Cancer

Cancer treatment is all about numbers, data, and statistics. There is a steady collection of data every visit - white blood cells, red blood cells, platelets, blood chemistry, weight, symptoms, etc.  Data is collected, charted, and scrutinized at every turn and the data determines the next step.  At each treatment, I get a printout of my blood work.  I can check if I'm moving up or down.  For me, there is something comforting and concrete about data. With it I can see what's going on inside my body and understand the next steps.  I can look at progress from my pre-chemo self.    

This week, I've been worried about platelets.  The oncologists want your platelets number to be above 100 otherwise you risk not being able to clot if you were injured.  In other words, below 100 you are too sick to be made sicker with chemo.  At my last treatment my platelets were 108.  I barely squeaked by.  So I'm hoping and praying that they come up before my next treatment on Wednesday. Between treatments, I've tried to eat well, get some fresh air, move around, and pray that my body is doing its thing to generate more platelets.  There is really nothing to be done for this but pray.

Over the course of treatment of millions of patients, data are converted into statistics. Statistics are everywhere in the cancer world - percentages of getting this side effect from a certain chemo drug or having this allergic reaction, survival rates, surgery success rates, etc.  And then there are anecdotal stories - data points without context. I've heard stories of survival from my type of cancer and others. I like hearing that someone made it 10-20 years after colon cancer. There is hope in those numbers. 

The more grim numbers are the survival rates.  I have stage IV colorectal cancer, and I do not talk about my chances of survival. In fact, I avoid thinking about NOT surviving.  My parents have not asked about 5-year survival percentages. I assume they can Google it if they want to know. Only a few friends have asked. My answer is "I don't know", and I am being honest.  Not once have I asked my doctor for that number.  I suspect that the 5-year survival rate is not high because stage IV of any type of cancer is pretty advanced.  But I also know that these numbers are not definitive either. Survival rates are an average of years of survival from people of various ages and health. I am an individual person not an average. I'm a 42-year old in excellent health - cancer notwithstanding - with a robust immune system and the stubbornness of a herd of mules. Survival rates only apply to me in the abstract. I refuse to give it power by talking about it, and I firmly believe that I'll be a 5+ year survivor - a data point in the win column.  

Random Thoughts from the Chemo Room

Since I have four of these visits under my belt and will likely have a dozen before it's over, I thought I would share my observations and advice should you ever find yourself in this spot.  I hope and pray that you don't.

This photo is from my first chemo treatment.  I had 12 different drugs that day.  I think I won that round for most bags of anyone in the room.  If winning is such a thing here.

Science is Important

I've talked to people who are 10-, 20-, or 30-year survivors of cancer which is very encouraging.  My experience with cancer treatment is radically different from theirs.  Over the years researchers have made huge advancements in creating new chemotherapy drugs, matching the drug cocktail to the cancer, tailoring the dose to the patient, and minimizing (although not eliminating) the awful side effects.  I'm not sure a true cure to cancer is possible, but I see so much progress that it gives me hope for the future  - early detection, improved treatments, and better long term survival rates.  I cannot imagine what will be available to my now 9-year old when she has to start colon cancer screening at 32 years old.  Hopefully it will involve a blood test or some other non-invasive diagnostic. Not everyone is cut out for scientific research but all of us can support organizations and political candidates that further scientific research and support science education.  

"In the face of overwhelming odds, I'm left with only one option, I'm gonna have to science the shit out of this."  - Mark Watney from The Martian.

Choose your seat wisely

I am in the chemo room for 4-5 hours every other week. That's a large block of time to sit and think. Based on my observations, my introvert nature, and my desire not to chit chat, here is my ranking of the best seats in the house:

1. Next to the younger person with the iPad or laptop and earbuds.  They don't want to talk and will gladly leave you alone.

2. Next to the snack basket.  You need your strength.  Eat some free Cheetos.

3. Next to the old guy.  He's not going to talk at all.  Within minutes of kicking back the recliner, he will be asleep.  His snoring is like a white noise machine.

4. Next to the little old lady with her knitting, crocheting, or worn paperback.  She's going to smile and maybe say hello then she is going to busy herself with her craft or book.  

5. The one with an empty seat next to it.  This seems like it would be the best option, but it is only a good option if you brought a friend or relative with you to park in that seat.  They will likely be booted out of the seat for another patient later, but in the meantime, you've got someone you like next to you. The downside is you have no control over who sits there next.  This is a risky move.

6. Next to the bathroom.  Seems like a good idea to sit close considering they are putting what seems like gallons of fluid into your body that you will need to get rid of.  But you really don't want to see the coming and going of each patient.

7. Next to the middle-age lady who brought her friend, daughter, or sibling.  Her partner will not be shooed from the room even if it means sitting on a horribly uncomfortable plastic chair for hours.  They are going to make small talk the entire time.  Earbuds are your only hope. 

There is always someone in worse shape than you

In our consumption-driven society, it's easy to notice people with bigger houses, nicer cars, more expensive clothing, and more exotic vacations.  It's tempting to succumb to the better life syndrome.  It is just the opposite in the chemo room.  I'm on the young end of the age spectrum in the chemo room. In fact, I've only seen one patient that is close to my age.  There are patients who are on oxygen, patients who bring in a gallon-size Ziploc bag full of prescriptions, patients who roll in on a walker or in a wheelchair, and patients who are obviously very sick and very miserable.   It's pretty easy to find people to add to your prayer list.   It's pretty easy to see your situation in a different light.  It's pretty easy to find gratitude here.