Archive | January, 2011

What the doctors don’t tell you

24 Jan

My blog posts have slowed down a bit recently, which has been a direct correlation to my energy level.  I’ve had a difficult past few weeks and it wasn’t really something I was prepared for.  Since commencing my cancer treatment, I’ve signed countless release forms, acknowledging endless potential side effects ranging from loss of salivary glands to internal bleeding to death.  However, there’s one thing that none of my doctors warned me about…addiction to pain medication.

I had been on one type of pain medication or another since my surgery in the beginning of November.  By the first week in January I had progressed enough that I decided I didn’t need any more pain meds, so I stopped them.  Cold turkey.  It was only then that I realized I had developed an addiction.  Not a mental addiction, but a physical addiction.  My gut instinct was to feel slightly ashamed; how had I let this happen?  I shared this with some family, friends and doctors, only to find this is more common than one might think.

My doctors had been so quick to prescribe endless amounts of pain medication, but never provided the instruction manual for discontinuing it.  I think I’m going to offer to write one for them to give patients.  It would read something like this: Before going to bed, place three spare t-shirts next to your bed.  You will sweat profusely through all of them before morning comes, yet manage to have goose bumps on your arms the entire time.  Plan to exert 300 times the effort, only to accomplish 20% of the work.  Your legs will sometimes shake with tremors – just ignore this.  You will be exhausted the entire day, but won’t be able to sleep.  Once you are almost through the withdrawal process, your adrenal glands will be completely reversed and your energy will bounce back to normal levels…at 2am.  At this point, quit your day job and try to find a graveyard shift you can work.

Needless to say, going through this process was difficult.  After quitting cold turkey – and being miserable – I did some research and found that most doctors will tell you never to quit instantly, but rather to wean yourself off.  So I gladly resumed the pills for a short while in order to gradually come down.  It’s now been a week or so and my energy and internal clock are finally falling back into place.  So what’s next?

I continue to sport my ileostomy bag – it’s been 12 weeks now, but who’s counting?  In order to get rid of the bag my new GI tract has to be leak-proof, however I failed the last leak test they performed.  So we wait a few more weeks and try again.  In the mean time, I’ll be getting another CT scan done to assess the remaining lesion on the liver.  Depending on the size (if it’s shrinking, maintaining, or growing), we’ll determine the next course of action to treat this area while we’re waiting for the plumbing down below to seal.  While there is still a lot of work to be done, I remain optimistic.  During my last visit to the oncologist’s office, I informed him that I turn 30 this summer and that I plan to be cancer-free by this time.  He thought this was a completely realistic goal, which was reassuring.  It’s been a long time since I was this excited for my next birthday!

Happy New Year

4 Jan

Happy 2011!  I’ve taken a little break from blogging to enjoy the holidays with the family.  After spending a relaxing Christmas with Mom visiting in Las Vegas, Nick and I ventured to St. Louis for a belated Akerberg Christmas and for the beautiful New Year’s wedding of our friends Andrew and Angela.

Needless to say, 2010 has been a year unlike any other.  It began with energy and enthusiasm – wedding planning was well underway and in addition to my full time job I was teaching three college classes with 85 students.  Soon after my classes had finished – and 82 days prior to my wedding day – I received my diagnosis of cancer.  Since then I’ve:

  • Spent 100s of hours in doctors’ offices
  • Endured 28 sessions of radiation
  • Undergone 7 rounds of chemotherapy
  • Harvested my eggs to make 10 frozen embryos
  • Had 3 colonoscopies and 1 surgery
  • Spent 24 days in the hospital (across two visits)
  • Become a VIP customer at Walgreen’s filling a record number of prescriptions

…And it’s not over yet.  There’s been some medical progress since I last posted – I finally had the drain in my butt cheek removed five days before Christmas…needless to say it certainly was a Merry Christmas after that happened.  However, as seems to be the trend, with progress comes other setbacks.  After having the drain removed, the only apparatus I’m currently sporting is my ilieostemy bag, and up until recently it has given me no problems.  That is until last week.

I was very excited to start working full days in the office, and I’ve even managed to put together some bag-friendly work outfits!  Last Tuesday I was sitting at my desk in my nice cream colored wool dress pants.  Around 11:30 I looked down only to see my bag had started to leak…ugh!  Not knowing whether to cry or laugh, I ran down the hallway to explain the situation to my amazing and incredibly understanding boss.  Within minutes I was in my car and racing down the highway to get home.  This was one time that I wasn’t really concerned about getting a speeding ticket; I was pretty confident that I had a good reason, and was sure any officer would let me off the hook at the sight of fecal matter making its way through the front of my pants as I handed them my license and registration.  Fortunately it was a non-issue and I made it home in record time.  But the drama doesn’t end there.  Fast-forward to New Year’s Eve.  We were with the Akerberg’s at the elegant Chase Park Plaza, dressed to the nines and enjoying a midnight cocktail when all of a sudden I knew I had sprung another leak.  What a way to ring in the New Year.  Nick’s mom, Nora, rushed me back to the house and assisted as I cleaned up and changed my bag.  This is by no means a glamorous process and she was the ultimate trooper!  And if that wasn’t enough, I experienced a third leak while waiting for a delayed flight in the Memphis airport on our way back to Las Vegas…not a fun flight home.  Nick continues to joke that I’m dealing with my own wiki-leaks drama!

So what’s next?  This week I go in for another imaging test to see if the new ends of my colon and rectum have fully attached together and made a secure connection.  They do this by injecting a liquid dye into the area.  If it shows up outside of the colon, it means there is a leak and more time is required to heal.  Fingers crossed there is no leak, which means I’m ready for the reversal surgery where my surgeon will tuck my protruding ileum (small bowel) back into my stomach.  End result?  Normal bowel movements and no more bags.  After all, the only bag a woman should sport is on her shoulder!

In the mean time, I’ve decided to start 2011 off with the same enthusiasm and vigor that I did 2010, in hopes that it will carry me towards a successful win over this battle with cancer.  This, however, has been much easier said than done so far as my energy levels aren’t what they used to be.  Here’s hoping that all that – and more – will be restored in this new year!