Friday, July 20, 2012

I'll Settle for a "C"

This is what the test looks like. Obviously that's not me in the
picture, but that woman's got a sweet 'do.
For every difficult moment dealing with at-times harsh and frustrating medical world, there are dozens of tender ones that put me back in confidence and at ease. I’m extremely fortunate that many more times than not, I’ve had very good experiences despite the often difficult circumstances.

Since the inpatient debacle of last week I was connected with a pulmonologist at Hartford Hospital who did a full work-up of my inflaming lung situation. My local oncologist, Dr. Dailey, got me in with him, highly recommending his expertise. He never steers me wrong. I was extremely impressed with how thorough this doctor was with me, how much homework he had done on my case, and how much time he spent with me even though I was squeezed in as a last-minute patient. (Housekeeping note: Full disclosure that I work for Hartford Hospital, but this is written with my patient, not my marketing hat on. As it has always been, my opinions and experiences expressed on my blog are solely my own and no reflection of the hospital’s.)

The pulmonolgy team hooked me up right. I worked with a wonderful nurse who walked me through a full Pulmonary Function Test. This involves a series of breathing tests done into a mouthpiece and tube that measure how much air my lungs can take in, how much they blow out, and how well it circulates the oxygen through my body. I’ve had many of these workups done since beginning chemotherapy treatment, and I admit they are one of my very least favorite types of tests because it is so defeating. I already have reduced capacity from the Bleomycin of my frontline ABVD chemotherapy treatment. Bleo is known to cause lung toxicity. Now we know that the radiation – and possibly the SGN-35 – have also sucked a bit of the healthy function away. The old irony of cancer treatment: toxic medicine.

Our session was conducted in a teeny tiny room without air conditioning. The entire office suite’s AC had blown and it was a cool 98 degrees that day. Holding my breath for extended periods and blowing hard into a tube until I was out of air then sucking in on an inhaler were certainly not my activities of choice, but it was important to get a read of where I’m at. The nurse was a super coach. Super super. Every time I’ve been through one of these tests at any institution the pulmonology nurses are always extremely outgoing and energetic as they demonstrate what I am supposed to be doing for each part of the test then yell in an encouraging way at me throughout it:

“BLOW! BLOW! BLOW! Let it all out! You can do it! Push! Push! Push! You’re almost there. You’re almost there!” She’d chant it me. She was so petite for such a loud voice in such a small room. Good God, girl.

“Big breath in! Big, big, big breath! Hold it! Hold it! Holllllldddddd it! Beautiful! You’re doing great!” would follow. She didn’t quit and so I didn’t either, though I ached to have the set of lungs she had on her and wondered how she kept it at that high of a level from patient to patient all day long. It made me exhausted just thinking about it.

I complemented her coaching skills as I pulled away from the mouthpiece with a big line of spit connecting it to my bottom lip. She told me it was all the cheerleading she did in high school and then it made sense.

The report was run and the doctor reviewed it seeing me immediately afterward. Tests results in the 80s are hovering at the below average mark. Most of mine were in the mid-70s, so I am functioning, though not at the best for my age and size. All of my other factors (i.e. 3 years of chemotherapy) aren’t in the equation; this is me against the “normals.” I’ve still got a lot of power, but I am very competitive. I don’t do well with less than perfection. I was a straight A’s kind of girl. But I must let that go. If I’m average and still breathing, so be it. I’m happy as shit to be a C student. My weakest area, which hovered in readings down to the mid-60s, is how efficiently my lungs push the oxygen out and through my body. I seem to be trapping some air in there. Hopefully this will improve as the inflammation reduces.

After a long conversation with me about my lymphoma treatment history, lifestyle, symptoms, and all concerns, the doctor conducted a thorough exam and listened to my lungs noting that they sounded pretty good. We’re on the up-and-up. He then took me into his office to pull up my PET Scan pictures he had received from Sloan and carefully went through the lung lesions with me pointing out what every vessel was and explaining to me how certain areas are certain colors and shapes for certain reasons and assuring me that much of the type of inflammation I have in there is correctable with the steroid course.

After this full analysis, his opinion was consistent with the lymphoma and radiation doctors at Sloan-Kettering: This looks to be a case of radiation pneumonitis or recall. There is no real way to tell if the SGN-35 is exacerbating it or not, but his advice is to stay on this standard 60mg Prednisone course for three weeks then continue on the SGN-35. We know the drug is working against the lymphoma so let’s not jump the gun and take me off it. It is very common for the lung tissue to be damaged by radiation near the area and for these acute signs to show up months later. The areas of concern are in exact proximity to my zapped T7 and T10 vertebrae so an educated assumption can be made.

I’ve now had three lymphoma specialists, a radiation oncologist, a transplant doctor, and a pulmonologist look at my scans, my history, and my symptoms and make the same determination. My level of comfort is very high that this will clear up and that I’ll be able to stay the course on the SGN-35. I’m appreciative of all the time and effort these docs have taken to thoughtfully look at my situation and feel that Keep My Ass Alive Enterprises is once again running smoothly. There’s bound to be a cog out of place once in a while. My fluky cog just happened to be a rounding doctor.

This CEO is on a serious steroid high, so there ain’t going to be nothing getting past me. My brain is at ultimate processing speed and my body feels invincible. I can’t stop eating or moving or planning or organizing or cleaning. Productivity is through the roof as is the size of my cheeks which are once again bloating with steroid moon face.

Most importantly however, the coughing fits are gone. I haven’t had any dizzy spells. I can take a full breath again. Between yesterday and today I’ve paddle boarded with my sister, took an hour-long yoga class, and walked two miles with Samalama Dog. Something must be working and someone knows what he or she is doing despite (or because of) all of my questioning last week. The next chemo infusion is on tap for July 30. Until then, I’ll be riding high enjoying another solid lineup of weddings, showers, birthday parties, brunches and barbecues in the weekends to come.


  1. Hooray for all the former cheerleaders in the world! It's such a great thing to come across health-care providers who are good at their job, no matter how many patients they see. Love that! I'm tickled by your good news and say rock on in your steroid high!

  2. Glad things are back on the upswing.
    -Sarah B.

  3. I can barely contain my smiles!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!