Tuesday, December 15, 2009

December Oncology Report


Such a fragile word. Such a powerful word.

I saw my oncologist today. My oncologist, the wonderful and skilled and thoughtful Timothy Moore, and not his colleague, Dr. Bully.

My appointment was for 10:30, and all morning before leaving, I paced and rehashed (briefly, briefly) the disastrous July appointment. I was in tears from time to time and wondered if I could keep my voice from breaking at my appointment.

By the time Warren picked me up, I was tense and edgy. Thinking I was masking it well, I immediately said, "I'm not happy. I'm tense and edgy."

Warren did not roll his eyes, which he would have been more than entitled to do. Instead, he squeezed my hand and said "I know."

On the hospital elevator to fourth floor, I felt the tears coming dangerously close to the surface. "I'm nervous. I'm scared." "I know you are, it's okay." "I'm scared Dr. Bully is going to show up."

As I checked in, just short of hyperventilating by then, Warren pointed to a large sign that said "Dr. Moore." Okay, so my doc was in. Whew. Then as we sat in the waiting area, I heard Tim's voice down the hallway.

Warren nudged me. "That sounds like Tim."

I nodded. My breathing started to return to normal.

I don't think I quite believed I was seeing my doctor until he blew through the door of the examining room with his trademark grin and hearty handshake. We briefly discussed what happened in July. Tim offered neither excuses nor apologies for his colleague's bad behavior, but said, firmly, "you will only see me from now on."

And then we moved on to my myeloma. My myeloma, which has gone unexamined and without thoughtful review for months now. My myeloma, which I have now known and lived with intimately for five years and one month. (But who's counting?)

Last week I had a kappa free light chain assay - the new gold standard for monitoring myeloma - done for the first time.

And the results?

I am still floating in Cancerland. My numbers show the same low-level myeloma activity that has gone on for the last three years. Because this was my first light chain done, I had no baseline for self-comparison, but Tim pointed to one number and said "see that 5? It should be below 2 in a person with no myeloma. My patients with full-blown myeloma? That number is in the hundreds."

Floating, floating, floating. My spirits started to soar.

Tim and I talked about myeloma treatments (none of which I need yet), about my swimming and walking, about my energy levels, about our respective children. We talked about my lack of medical insurance, about this country's failure to solve the healthcare issue, about my potential lack of options (because of cost) should my myeloma reactivate. We talked about all the amazing treatments today that did not exist five years ago when Tim and I first met. He decided which lab tests in which sequences he would order so as not to bankrupt me, then said "I'll see you in March. Have a great holidays, you two!," flashed his grin, and was gone.

The weight of the stress I had been carrying since July was off my shoulders. I all but danced out the room with Warren trailing behind. My cancer is still floating! It's there, we all know it's there, but it is behaving itself! The KGB hasn't moved in yet!

When I got home, I had a voicemail from my friend Doug, who is in the middle of a battle with stomach cancer that makes my experiences look like a cakewalk. I caught him by phone before he left his office, and we caught up, first on work, and then on cancer. Doug is going through increasingly stronger chemotherapy, with the goal being surgery in January. Despite the nausea, the energy loss, the uncertainty, Doug's first words were "I am so blessed." Blessed because he appears to be responding to treatment, blessed because his family and friends and colleagues are all standing shoulder to shoulder to help him through this trial, blessed because he is still alive. I shared with Doug my own Cancerland news and could feel his genuine joy through the phone lines.

Talking with Doug was the unexpected icing on the already substantial cake I'd been given earlier this morning.

I then emailed my friend Cindy the news and she responded gleefully. She thought maybe now I could feel some Christmas spirit.

Maybe I will. We'll see.

I do know what I feel right now though. Grateful. Blessed.

And full of hope.


Joni said...

I'm glad your test results came back with positive information from Dr. Moore (and not Dr. Bully!!!). Your holidays will be brighter with the fear and unknown behind you. I would have been skipping out of the doctor's office like I was a child!

I will keep Doug and his family in my prayers as he continues with his chemotherapy and hoping that a successful surgery will happen in January.

Christine said...

Oh yeah! I am so glad to hear the great news, April. I know its your great, warm spirit that keeps you free from the KGB. I am so very happy. :)

And I, too, will keep your friend Doug in my prayers.

To a warm and happy holiday!

Anonymous said...

You should print this and show it to your oncologist, Tim. I am sure he'd want to know how you feel about "Dr. Bully", and I'd bet he'd make sure you never have to see that guy again.

Sharon said...

YEAH!!!!!! It will now be an extra Merry Christmas for me too!!!! :)

Arlene said...

You are indeed blessed in many ways, April, in spite of this ongoing battle. But beyond that, you are a blessing to all who know you. Certainly you have kept me going through many mazes...