Posts Tagged With: Posttransplant Lymphoproliferative Disorder

Reflecting On The Last Year’s Journey

It has been almost a year since my daughter, Anna started on a new journey…cancer.  She had been lethargic and nauseous for a week or so.  I’m divorced and my kids have been alternating from their dad’s house to mine on a weekly basis for 10 years.  I hadn’t seen her for a week and she looked awful to me. I suggested she call her doctor (she was 22 then and responsible for making her appointments and communicating with her medical teams).  She got an appointment with her cystic fibrosis (CF) Dr. who thought the problem was an intestinal blockage and sent us home with a colonoscopy prep cleanse.  Not for a colonoscopy, just for cleaning out the pipes.  It didn’t produce much since Anna had not eaten for several days.  The next day she felt worse.  I took her for her regular lab draw and she could barely walk due to dizziness.  She was so pale.  Something was wrong but we didn’t know what.  After the blood draw, she said she felt like she did after her lung transplant when she needed a few units of blood.  I told her to call her Dr. right then and find out what to do.  Thankfully she instructed us to head to the ER at the University of Colorado Hospital.  That was the beginning of discovering she had Posttransplant Lymphoproliferative Disorder (PTLD), a form of lymphoma.

At the time, our world was spinning rapidly out of control.  We have dealt with hospitals and doctors since Anna was four weeks old, the day we discovered she had CF.  We’ve gone through the challenges of a double lung transplant.  But cancer!?  It just seemed like too much and everything felt new and exhausting.  It was a turn in our lives that sent me reeling at times.  I remember fighting to keep myself from spinning wildly out of control with fear and anger.  It felt like a monster grabbing for my ankles, its nasty tentacles hungry for something to devour and I was its target.  That was by far the worst season of my life. And it’s over…it’s over!  It’s been over since last December when we heard there were no signs of cancer in her body.  Chemo worked its magic.  It doesn’t always work, not for everyone.  One of Anna’s transplant friends who was diagnosed with PTLD near the time she was, died.  He didn’t get to hear, “There are no signs of cancer in your body.”  But we got to hear it.  I hate that part, not that we got to hear it but he and his family didn’t.  Surviving is a gift but it carries with it the reminder that not everyone survives.  Whether it’s cancer, CF, a plane crash…some survive and some do not and that knowledge is just plain heavy.

Anna recently had another visit to the shiny medical capital of Duke University Hospital in Durham, NC.  She got to hear again that everything looks great!  All her numbers, the indicators of her health, are pointing toward success.  Her lungs have expanded since her transplant, filling her chest cavity beautifully, happy in their new home.  Her blood work indicates no signs of cancer.  Her Dr.s beamed with pride and excitement about her robust health.  They spoke this audibly so she, her grandmother (my mom) and I could hear it and share in the good news.

Tears are filling my eyes while recollecting the past year and seeing where our journey has brought us, at least for now.  I also fully recognize, having lived it at extremes for a few years now, that life is unpredictable.  At any moment our world can change.  I’m challenged to find the balance of enjoying the now while embracing the unknown. Just holding it with curiosity, wonder and healthy respect.  Not fearing it and allowing it to consume me unnecessarily.

Categories: Acceptance, Growth, Healing | Tags: , , , , , , , , , , | 2 Comments

Blog at WordPress.com.