Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, January 22, 2010

My New Pulmonary Function Baseline

As predicted, my mania at 3:30 am caught up with me.
I passed out cold, in my clothes, at 6:30pm without taking my evening medications.
The day that preceded the collapse from exhaustion was well worth it though.
After ten years of dating and five years of marriage, it was long over due for some mother/daughter-in-law bonding time.
My mother and law and I had never once before put aside time for just the two of us to get to know one another and how we think or what we like.
Suddenly, we've found ourselves at similar places in life.
She stopped working this year and has been helping us immensely with Xander, but her days need to be filled.
I'm finally feeling better. I can breathe, my pain has decreased, so not only can I hang out, but I could possibly even be enjoyable.
Who knew?
So we set up a date in the context of getting my pulmonary function tests done at Dartmouth.
After almost four years of treatment at Dartmouth, it was Becky who showed me that they do, in fact, have services for the handicapped to get to their appointments.
If you arrive at the main entrance, they will park your car if you are disabled and wheel you to your appointment!
What a relief!
I didn't think I'd ever be able to go to the hospital independently, even if I was capable of driving, due to my lung issues that prevent me from walking long distances.
Now, I know I can.
You learn something every day.
It was a big test day too. It was the day I was having my pulmonary function tests that would determine my new baseline lung capacity.
The new test readings are the best my lungs will ever be after years of chemo, radiation, and cancer.
Certainly not a test I wanted to fail.
My pulmonologist at Dana Farber, who I see Friday Jan. 29th, stated that my lung disease was probably a combination of multiple pathologies and processes including bronchiolitis obliterans (BO), BO with Organizing pneumonia (BOOP), maybe another infectious process.
He also cited the fact my lung had been directly radiated. This probably resulted in the fibrotic (dead or scarred) lung tissue that no longer perfuses in my right upper lobe.
This is the same area I have a pneumothorax.
A pneumothorax is a collection of air or space around the lungs. It can be caused by COPD (as in my case, bronchiolitis obliterans), asthma, cystic fibrosis or TB.
Symptoms include chest tightness/pain, shortness of breath, nasal flaring, easy fatigue, rapid heart rate, low oxygen saturation.
Since my pneumothorax lives in the area of dead lung tissue it doesn't bother me. That portion of the lung isn't functioning anyway.
I found a great site for interpreting the results of pulmonary function tests, if anyone ever wants to read their own. It's from The Cleveland Clinic
I know I improved!
I'm breathing better for starters. That was a give away. I'm not lugging around a ten pound jug of oxygen.
How much? I think he said my lungs expand another 3/4 of a liter and perfuse 144mls.
Forced expiratory volume (FEV) was 3.04. My predicted was 3.79 based on age, hemoglobin, etc.
Forced expiratory volume over one second (FEV1) was 1.01. Predicted is 3.23
The ratio of the FEV1/FVC equalled 33.05. Predicted was 85.07. That's in a normal, healthy young woman though.
That woman is not me.
My perfusion capacity, or the ability of my lungs to absorb oxygen across the tissue membrane, has improved to near normal.
When I was in distress, I could feel my lungs refusing to accept the oxygen, refusing to comply with my breaths.
I would breath and the air would hit a wall, literally. Breaths are supposed to flow nicely to healthy tissue and diffuse.
Mine did not. I'd breathe but nothing would happen.
The news is not fabulous. I'm not entirely NORMAL, but I'm probably never going to get that anywhere.
What exactly is normal anyway?
At least the respiratory techs were good sports about my blog and took some pictures you could enjoy.
I also did have the mom date, which went so well we plan on doing again, maybe with Alexis and Xander this coming Friday. Since I have to go anyway to see the pulmonologist, we thought we might make it a field trip and meet my sister at the Museum of Science or Children's Museum.

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