Day 28: Birthdays and Bombshells

Today my boys turn 8 years old.  I have to admit, I did not plan on celebrating in the oncology unit of a hospital.  I’m pretty sure that wasn’t high on their list, either.   In fact, I think it was either a bowling party or a movie party that they were angling to invite all of their friends to.

When this whole journey started, I thought I’d get in… get my first round of chemo… get into remission… and be home in less than a month.  Enough time to celebrate their birthday at my own dining room table.  As positive an outlook as I had, it still was not enough to effect change by itself.  Nor was it meant to.

I can have all of the happy thoughts in the world, believe that I will be well, but when it boils down to it: I have an aggressive form of leukemia that requires targeted treatment to give me the best outcome.  The first round of chemotherapy took out some of the bad cells.  My platelets responded in beautiful form . . . they are off making platelet babies like there is no tomorrow.  Last count, I was at 399 (normal range is 140-440).  At the low point of my chemo/count recovery, I was at 10.  So something responded.  However, there is still a pocket of immature cells (leukemia) that lingers and wants to wreak havoc on my immune system.  The plan is now to re-induce chemotherapy, and repeat the last three weeks of my life (Groundhog Day, anyone?).  This time, a different combination of medication will be used.  MEC therapy, named for the three drugs administered (Mitoxantrone, http://en.wikipedia.org/wiki/Mitoxantrone; Etoposide, http://en.wikipedia.org/wiki/Etoposide; and Cytarabine, http://en.wikipedia.org/wiki/Cytarabine).  They will be administered over the next 6 days, for about 9 hours a day.  I will then enter count recovery again (the rock bottom stage), and wait until day 14 (April 17th) to have another bone marrow biopsy done to assess where I am.

While that was a downer to say the least, the real bombshell was that the doctor said that I would now require a bone marrow transplant.  I was really hoping to get by without that, just having repeated chemotherapy.  I’d been through one round of chemo, I knew what to expect.  But a bone marrow transplant comes with a lot of risk.  The mortality rate is higher than I’m comfortable with, and there are long-term risks as well.  Doing further research, it looks as though full recovery post-transplant is typically a year.  I do not know if I can manage two-four more months in the hospital, and then being out of work for months beyond that.  Unable to go into public places, for fear of infection.

Yet how can I think otherwise?  It is the best possible chance for me to have full, lasting remission right now.  This is an aggressive cancer, and it needs to be fought back with aggressive treatment.  So, to all of my friends who have been asking, please go to http://marrow.org/Home.aspx and review what it takes to be a donor.  If you feel comfortable with it, please take a few moments to order the home testing kit.  Even if it is not my life – you could be saving someone else’s.

So the doctors left after unceremoniously dumping the bombshell (the above delivery/conversation took all of 2 minutes, quite literally), and I was left in shock.  I just fell apart, I could not hold back the tears.  So I let them fall.  And I cried – for the increased time I would miss out of my children’s lives, for the friends at work I desperately missed seeing, for the routine I was so fond of and missed terribly, to the athletic challenges I missed putting my body through.  I cried for it all.  I cried because I was scared – mad – frustrated.  And when I was cried out, I took a deep breath.  And knew I had to just do what was outlined in the plan.

Frankly, I want to live 50 more years.  I turn 40 this July (ouch!!!), and aim to keep going strong through my 90s.  I have way too much living to do.

But right now, that living entails getting rid of the tears on my face, and decorating the conference room on the oncology floor so that it looks like an awesome birthday party room for two amazing 8-year-olds.  My kids know that their party is going to be at the hospital tonight, but I still can surprise them by decorations and music and a mom dressed in NORMAL CLOTHES.  I’m not even sure if my jeans will fit…it’s been a month since I pulled em on over my hips.  😉

A little later…

Enlisting the help of Grammie and Uncle Chris, we put up streamers and balloons… and Grammie stood on the table and I have pictures to prove it . . . .(oops…. was supposed to delete that …..).  Jimmy Buffett blaring over my iPod, we had a huge sheet cake, and ordered enough pizza for the staff to share, and when the boys got there – they were surprised.  It was a lot of fun, and I think they really had a good time.  Unconventional?  Heck yes.  But fun.  😉

Once they left, I was ready for some down-time.  There was a lot processing in my head, and I knew that tomorrow would bring another central line insertion and the start of the next round of chemotherapy.  But tonight . . . just for a while longer . . . it was my time.  My time to think about the two amazing boys I gave birth to 8 years ago.  They were premature, fighting for their lives, had to be on a ventilator/assisted breathing.  They were small and scared.  And they came through it like amazing little champions.  When I’ve struggled with the nurses sticking me multiple times trying to find an IV, I think back to Gavin in the NICU.  When they exhausted every possibility for him, they actually used a vein in his head for his IV.  I can’t imagine that pain.  I have to push through this for those gorgeous boys.  They are my lifeline.

Garfield Happy Birthday