Saturday, January 10, 2009

Inhaling and exhaling

Yesterday I passed the dreaded pulmonary function testing, which is required for insurance purposes. I did it before my other transplants, but I was worried that the still-resolving pneumonia might make it more difficult. I guess the purpose of the test is to show that your lungs can hold up under transplant, but it’s as much a mental as a physical exercise, which you could fail just by having a panic attack.

A technician puts a clip over your nose and leads you through various tests. For one test, you put your mouth around a tube and breathe in and out and then take a deep breath in and push push push all the air out until you think you might turn blue. For another test, you put your mouth around a piece of equipment that looks like a snorkel and then, with nose clip on, breathe evenly for about two minutes and then do a big inhale and exhale. There was some writing on the bottom of the machine and I repeated each letter to myself to distract myself from the sensation that I was drowning.

I had a funny nurse yesterday who I remembered from my first treatment in 2003. Her name is Mel and she has a deadpan manner that used to crack my mother up. Yesterday we were talking in my room about the fact that I didn’t need platelets. I said I figured I’d probably need them in a day or so.

Mel said that you never know, my donor could still wake up and knock out the bad cells and my counts could come back up.

Then my cell phone rang.

“That could be them calling right now,” she said. (Exit smiling.)

I had shakes and a fever of 102 around 3 a.m. This set me back in terms of possibly going home before the transplant. In another downer, the kids were going to come this weekend but (wisely) canceled due to the storm. Diane and Margaret came, and I was glad to see them.

I thought I would lie down and try to meditate this afternoon, but quickly fell asleep. I woke up when a woman came in to do an EKG; one minute I was all warm under the covers, and the next I was having my shirt pulled up and cold sticky conductors applied to my skin.

The mental game is a work in progress. The high fever, the prolonged hospital stay, the postponed visits (not their fault…I would have worried about their safety if they came) edge me back into doom and gloom and how did this happen territory.

I went over to 6A for a pep talk from Myra. She reminded me that I need to take one thing at a time. The pneumonia is better. Next step, mop up the leukemia and get the transplant. Stay away from the dark side; all it can do is hurt me.

“Give yourself one or two seconds and then give yourself a kick in the butt,” she said.

Right now I'm giving myself a mixture of vanilla ice cream and strawberry jello. A little comfort food never hurt anyone.


Anonymous said...

Dear Ronni,
I came across your blog recently and I am moved at your strength, courage, and resolve. Through sharing your day-by-day feelings, emotions, thoughts, hopes, and dreams, I feel connected to you. I shed tears at your hardships and smile when you are coasting. May the Supreme Being guide you to health. May your doctors and nurses provide you with the tools to hasten your recovery. May you live, live, and live. Om Shanti Om.

Susan C said...

I know what you mean about those pulmonary tests feeling like drowning (or water boarding). I'm amazed that you were able to complete them with your pneumonia.

Thinking about you always.

Keep fighting one step at a time.

Ann said...

The panting test always got me. It's such a foreign sensation to express all of the oxygen from your lungs on demand. The things we do.
As for the dark're full of too much light to dwell for long there. There are many people who have come to care for you through your blog and we are with you every step of the way.

PJ said...

Reading your description of the PFT brought me back to the several I've had. Made me tired.

You're on a hellish road right now, but listen to Mel and Myra the Wise. Good stuff's happening with the bad; you just have to dwell on it a little.

Margaret said...


Here is a tape to play in your head (replacing that other tape that is dragging you down).

You DO look good, and that reflects your overall fitness despite the setback.

You are being treated by some of the best doctors in the world, at one of the best cancer institutions in the world.

You have legions of relatives, friends and blog-ees wishing you well, praying and meditating upon you ... returning the good kharma you have always given others.

You have a a treatment plan and it is moving forward.

Nelle said...

You are too intelligent not to have some thoughts that question why this happened, however I would quickly move on whenever possible to the thoughts that you have done this before and you can do it again. I cannot imagine having to do that test with your recent lung problems but it just proves more and more that you are a warrior. It sounds like you have a great support system there. I believe in you. You are going to proceed as planned and with the help of a great team there, you will win this last battle. Stay focused on your future healthy once again.

Anonymous said...

Hmmmm, strawberry jello- whatever you can get down and KEEP down.

I too don't like the PFTs. I don't know why and I always get anxious no matter how many times I have done them.

Keep on going!

srs said...

Hi R - Glad to hear you passed the tests. I hoping you will feel better in a week or two when RX treatment actually begins. I think it is difficult to just wait around for something that is supposed to help you. Once the RX begins you will be in the midst of the "fight" which you excel at. SRS

Anonymous said...

I agree with Margaret. Yo DO look good and that's why you'll do well with the transplant. The stronger physically AND mentally you head in, the better the results!

Wendy S. Harpham, MD said...

Hi Ronni,

I answered your question on today's post of my blog, ok?

hang in there. with hope, Wendy

Saul Wisni said...

Hi Ronni,
The blog looks and reads great. Congrats on being up for two awards; I'll certainly pass on the word. In the small world department, it turns out my Dana-Farber colleague Sam Ogden is neighbors with your sister, Diane, and their sons are close friends. Keep making those kitchen table visits and keep fighting!

Mieke said...

Ooooo, that insurance test sounded more like water boarding! The hoops you have to jump through! Ack! Super glad you passed the tests with flying colors though. Did your kids get a chance to visit yet?