Life Between Treatments

One of the biggest adjustments of my life was becoming a mother.  I went from having minimal schedule constraints to having a cuddly 6 lb. dictator telling me what I was going to do next.  I quickly realized that my new mom life would be broken up into 2-3 hour intervals because that was the time I had between feedings - feed, diaper change, soothe and snuggle, nap, and repeat.  In between I had 2 hours to eat, sleep, shower, run errands, etc. Most of the time I opted for sleep.  That phase didn't last long, and it was 10 years ago.  However, I still remember what a life change it was for me.  

Now chemo has put my life on a two-week schedule - chemo, recovery, rest, feeling okay, feeling good, feeling nearly normal, and repeat.  My typical chemo cycle starts on a Wednesday with chemo for half the day and then a nap.  Thursdays if I feel okay, I'll run errands, do a few things around the house, or go shop with my mom.  If I'm feeling puny, I stay home and nap.  Usually on Fridays I'm exhausted.  I don't sleep well because of the steroids and the fact that I'm wearing a stupid fanny pack with my pump in it.  Saturdays are generally as lazy as I can get way with.  On Sunday, I'm perking up and getting ready to go back to work on Monday.  I basically lose 4-5 days each cycle, and then I get 9-10 relatively good days that follow.  The weekend before I start the next cycle is usually really good.  I have more energy and feel like doing things.  I feel almost like someone who doesn't have cancer.  

This has become routine for me after 17 treatments.  I was pretty bummed out by the thought of taking chemo "indefinitely".  Who wants to spend the rest of their life on this sick-to-get-well roller coaster?  However, after a few days of wallowing, thinking, praying, and sleeping, I decided that I need to focus on the positive and focus on living.  I have been putting off the big things until "I feel better" as if joy is something that should suffer from my chronic procrastination. 

I've made some changes in my life and my attitude that will allow me to make the most of those well days between treatments. On thing has been to pare down our stuff.  I don't want to spend my weekend cleaning the house, so I've been streamlining our household so that it requires less of my time.  Sara has been chipping in on chores so that we can get stuff done in less time.  I have also pared down our commitments.  Sara still has her activities - swimming, girl scouts, drama, etc.  Those things are important to her as they represent normalcy.  I want her to be able to hang on to normalcy as much as possible.  Our life may have been turned upside down, but I don't want this period in her childhood to be marked by isolation, boredom, or anger about missing out.  In order to manage all her activities, I must either take on less or delegate more in my role on those activities.  In order to do this I had to abandon guilt of being the slacker mom and the control of having things my way.  Both of these were hard to let go.
 
I resolved to use my well time for fun, joy, adventure, or just quiet peace at home with Sara. I'm planning a few weekend trips for Sara and I this fall.  Plus I've booked my flight and am planning a rambling geologic and sightseeing road trip to Wyoming over fall break. This one is for grown ups - just me and Shawn.  Having something to look forward to helps me think and talk about life as if I'm a normal healthy person.  It helps me to keep moving forward.  I want to spend my good days being as normal as possible.

Indefinitely

I have chemo again this week, and I will be starting on a new drug this treatment. After 13 treatments with the platinum-based drug, the neuropathy in my fingers and toes became too much.  It will go away eventually but it may take months.  According to my oncologist 10-12 treatments is the norm for that drug.  I made it through 13 before raising the white flag. I've had genetic testing to find out if I had a genetic marker for colon cancer.  Negative.  That's good news for Sara.  It also means that there are more treatment options for me. If the latest drug doesn't work or I cannot tolerate the side effects, there are others.

People often ask me how many treatments I have left.  That's a natural question. We all like to be able to see the light at the end of the tunnel.  I have asked that question of my oncologist too. The answer, "indefinitely". Sigh.  I usually end up talking to the nurse practitioner more than the oncologist.  She's got more time and usually is a little more knowledgeable about the practical aspects.  She is just the kind of no bullshit woman that I like.  When my oncologist said "indefinitely", she added "or until it quits working".  Ouch.  The truth hurts, but I wanted to know where we were going.  So when Sara gets emotional and wails, "I feel like you are going to be in chemo forever", she may be right.  It feels that way to me too.

In the book The Death of Cancer, the author writes about advances in cancer treatments in the past 30-40 years, and where research and treatment are going next.  Through the advances in modern medicine and research, many cancers are now being managed as chronic conditions (like diabetes or hypertension) rather than terminal illnesses.  For example, I didn't know until recently that some forms of chemo can be administered in pill form.   I'm trying to view my illness as a chronic condition to be managed. I try not to think of the terminal illness aspect too often.  The chemo is fighting back the cancer, and so far it is winning this battle.   So I keep doing it and hope that it keeps working, and I pray that it is able to fight back to the point that I can have what's left removed with surgery.  Until the next waypoint, I keep plodding forward.