Thursday, April 10, 2014

The Worst Job You'll Ever Have

Sitting in this waiting room I see old people, young people, men, women, black people, white people, skinny and fat people.  There are baldheads, hat heads, scarves, wigs, and heads full of hair. I see spouses, mothers, fathers, sisters, brothers, friends, family, and private caretakers.  Cancer doesn’t take applicants. It doesn’t just accept those who have the prerequisites for it.  It doesn’t care about your GPA, community service or your internship.  It doesn’t care if you’ve been a garbage man for 30 years, a doctor for 10 years, or a stay-at-home mom raising her 7 children.  It doesn’t care that you’ve just retired or if you’ve just started your family.  When you get its call, you will take it, it won’t leave a message.  It expects you to drop everything because it has become your new full-time, limited benefits, job.  You may get some occasional time off, but never the promise of retirement.  It is the ultimate over-worked, under-paid scenario.

Our trip to “Saint Loolis” as Sloane affectionately calls it couldn’t have started out any better.  The kiddos did great with the 4.5-hour drive and we arrived at our hotel around 8pm Tuesday evening.  After the arrival of my dear friend Lindsey, we headed to the indoor pool to get Sloane some playtime.  After She proclaimed this was “the best day everrrrr” it was time for bed and an early wake up for lab work.  Dow, Brandt and I headed to the cancer center for labs and paperwork while Lindsey and Sloane walked to the St Louis Aquarium.  We finished with scheduling and a preliminary workup knowing Dow would be back for an Avastin infusion and trial drug injection in the morning.  After a traumatizing encounter with man-eating macaws at the aquarium’s entrance, Sloane decided that trip needed to be nixed before it even started.  As the day went on, Dow’s anxiety seemed to increase and we decided to go ahead and send the kids back to Kansas City with Lindsey so they could be in their environment.   We spent a lovely evening bowling, and trying to relax as much as possible.

This morning has been frustrating.  I know it’s just the first day kinks, but even when you think you’ve done everything to prepare-something goes wrong.  Between insurance red tape and pharmacy hold-up this already emotional day has become more stressful without even having a drug yet.  The plan is to receive the trial injection, followed by a 30 minute Avastin infusion, and a one-hour wait period for side effects.  We will then head back to KC to be with our little ones.  Unless I post another update, assume that all went well with medications and that we are tentatively planning to be back every 2 weeks for treatments.

Rarely does cancer affect only one person.  It takes its toll on the family, friends, and community surrounding them.  Life won’t stop for cancer.   Bills still have to be paid, lawns need to be mowed, and toilets have to be scrubbed.   I have seen firsthand in our lives the way people band together to help ease the stresses on our family.  Childcare, lawn care, meals, donations, the list goes on and on, and we are forever in the debts of those who have stepped up to take part in our journey.  In this waiting room microcosm, I am seeing all the different ways people cope with this garbage pail disease, and I am in awe of the way humans come together to care for one another in times of need.  

Tuesday, April 1, 2014

Fear of the Unknown is Far Worse than What is Known

The last 3 months have had its ups, downs, and everything in between.  Since Dow began the clinical trial at KU we have been living 8 weeks at a time.   He receives MRIs on this schedule.  So while we have done our best to enjoy life, there has been an undercurrent of anxiety. Always waiting for the other shoe to drop when scan time rolls around.

I have learned in the last 9 months that fear of the unknown is far worse that what is known.  Last summer, we had no idea what the future held for us.  What I know now is that we have been able to lead relatively normal lives since diagnoses.  We have been very fortunate that Dow has had minimal side effects from surgery, treatments, etc.

Last week that shoe finally dropped, and Dow’s MRI showed tumor progression.  After a lengthy discussion with our local oncologist we decided to head back to Washington University in St. Louis to pursue other options.  We returned home knowing we had several paths we could choose and the situation isn’t completely hopeless.  After an emotionally charged weekend, we were informed this afternoon that he is not a surgical candidate at this point in time.  This news is bittersweet.  Another craniotomy is the best method of tumor elimination, but I’m not sure that my heart could handle such emotion again, so soon.  It is now up to us to decide on which trial we are going to place our bets.

This is a horrific disease.  It is all consuming, with no real treatment.  It has affected every aspect of our lives and just as we were learning to accept our new reality, the consternation this development brings is devastating.  We have started the grieving process all over again.

Even though this is a major setback, we know what we are dealing with.  We’ve been living with a monster in the closet, but now we know what it looks like and it’s just a matter of keeping it at bay.  Our 2 year-old has started noticing strange noises.  When she gets scared, we remind her to see what it is, because she will feel better.  This is the same way we are approaching this.  The treatments may get worse, and the symptoms may be more prevalent, but we are prepared.  The fear of the unknown is far worse than what is known.

A dear friend has recently started the TEAM DOW FUND in our honor.  This is to help alleviate the increasing costs of treatment, medications, and now travel expenses.  Below is information for those who wish to donate.

608 Rosewood Circle
Raymore, MO 64083