Impossible to know

The week started out pretty normal, then took a detour that we didn't imagine.

For Father's Day, my daughter, Amy, gave me a “pulse oximeter”, that device they put on your finger in the doctor's office to check the level of oxygen in your blood. Through casual use we discovered that a trip up a set of stairs will lower my blood oxygen level into the 70's percentile. And resting it hovers between 86 and 92%. The readings suggest that I should be on oxygen.

On Monday morning we went to the Custer Clinic to qualify for home oxygen. Pretty simple procedure, walk down the hallway and sit and rest, while wearing the pulse oximeter. I easily qualified.

Our Doctor, Joy Falkenburg, met with us for a few minutes. She listened to my heart and lungs, and did a pretty extensive thumping. She told us that the right side lung was without breathing sounds, and was most likely not functioning or barely functioning. She ordered a chest x-ray.

After we got home we got the results of the x-ray electronically through the clinic/hospital portal (convenient thing, that). The x-ray showed what appeared to be fluid on the lungs. She suggested that the fluid on the lungs be further investigated when my regular CT was performed, which would have been later this month.

Home Health visited us at home on Monday afternoon and got me outfitted with an oxygen concentrator: a stationary unit and a portable unit.

Tuesday, was my regular chemotherapy day. My oncologist, Dr. Schroeder, was concerned enough with the x-ray that he rescheduled the chemo infusion for Wednesday morning and scheduled me for a CT scan that afternoon.

Wednesday morning, we met with Dr. Schroeder and looked at the CT scan. The scan showed that the cancer has remained stable for the last year, which is very good news and there is no sign of the cancer spreading, the Pemetrexid has been very effective. The scan showed a lot of scar tissue in the lungs, based on that he ordered an echo-cardiogram and pulmonary function test on Thursday morning. The chemotherapy was canceled.

It is impossible to know what was causing the scaring of the lungs. It could be a side effect of the Pemetrexid, it is a documented but extremely rare side effect. It could be an unknown “infection”: virus, bacteria, mold, autoimmune disease or some other disease. My blood tests show no sign of infection. The CT scan, back in May, showed this scaring pattern, it looks like pneumonia, so I was given a regimen of antibiotics just in case it was pneumonia.

So Thursday morning we once again drove 50 miles to Rapid City. I had a pulmonary function test first thing in the morning and the echo-cardiogram at 10:00 am. We met with Dr. Schroeder at 3:30 pm. He told us that the echo-cardiogram was read by Dr. D'Urso, the cardiologist who installed my stent. The echo-cardiogram showed a strong heart with a bit of fluid, not enough to worry about... so that was good. The pulmonary function test showed that my lungs have lost over half of their capacity in the last year, from 5.54 L in November 2016 to 2.45 L yesterday, which would explain the shortness of breath.

As Dr. Schroeder's concern is that this may be a side effect of the chemo drug Pemetrexid, for the time being, and perhaps for the future, chemotherapy has been canceled, at least the Pemetrexid anyway, until we know more. As it is impossible to know for sure what is going on, a limitation of science, it presents a bit of a puzzle.

Ideally, it would be good to be seen by a pulmonologist, except that they are in short supply in the western part of South Dakota currently. If an appointment could not be made in a couple of weeks a course of steroids would be started to reduce the amount of inflammation in my lungs. We talked about going back to National Jewish Health in Denver if necessary.

Got a call when we got home this afternoon, it was the Pulmonologist Office, they had an opening on Monday morning at 8:15 am. I am thinking that my oncologist has a bit of pull, thankful for that.

Have an appointment with Dr. Schroeder on Wednesday.

We are getting better about these sudden diversions on our path, but as you can see, they really screw up the schedule.

Overall, we have been dealing with things as they come up. Because of my breathing problems and nausea we tend to stay home a lot. We get out when we have to go to see the doctor... it is not really that bad, but close. Carol is doing OK but would really like to do some traveling if I was up for it and I haven't been. 

We really appreciate all the thoughts and prayers.  We have such great friends.

Love to all,

Van