New side effect

I have had this really dry bronchial cough every evening for several days. I must admit, at first I thought I was just picking up some run-of-the-mill virus because of my low white cell count. But as the cough got worse and worse, I started to realize something was up. Losing my voice to the irritation for a day was just the cherry on top.  A friend of mine, visiting me this week, has an asthma inhaler and that is the only thing that managed to alleviate it. 

I called my doctor to get that inhaler by prescription so that I could actually sleep at night. But nothing is easy. 

It turns out that bronchial cough is a known side effect of the immune treatment Keytruda, and even though I already had 6+ treatments, like all chemo it has a cumulative effect and it seems that now it finally kicked in. 

"Immune checkpoint inhibitors may cause pneumonitis, which is inflammation of the lungs that can cause a cough or trouble breathing. Pneumonitis is uncommon but may be serious." per doctor Google. 

Leave it to me to get the uncommon side effect. Just my luck, right?

My doctor requested that I go the hospital for an emergency lung scan to see if I had gotten any inflammation before prescribing the regular steroid inhaler.

Nothing like a little medical drama to spice up my birthday week! 

Long hallway

The long dreary basement hallway of 2 West, Lahey Clinic  -- I seem to come here every other day...

CT scan 12/17

My insurance finally approved the CT scan (a week ago it had issued a denial, as stage 3 breast cancer is not enough of a reason for the scan to see if there are any other metastases). Called the clinic and the Lahey technician was able to squeeze me in at the last minute at the end of the week on Saturday 12/17 at 8:45 in the morning. Kudos for that. 

The familiar basement 2 west wing lab. Had to remove all metal (zippers, wires), get an iodine IV (to add to the radioactive solution from last time), and I am off on the girdle into the metal donut. 

The scan itself was quite short, only 20 minutes, and not at all claustrophobia inducing, unlike the MMR or even the bone scan. 

I even managed to make it back in time for Max's clarinet school recital at 10:30!

Bone scan 12/15

Chilled to the bone....with background music by Imagine Dragons "radioactive, radioactive".

Had to do a bone scan to figure out if the cancer has spread, that might not be caught by the plain x-ray.

So, first you are injected with radioactive fluids (!) and have to wait around for at least 3 hours. Then in a chilly room in the basement you are lying on a girdle, with your hands in a strap (is that how an insane asylum feels?) and a large flat square slowly moves up and down, and side to side. 

Several hours here or there -- I might finally learn how to meditate as at this point I ran out of all the lists in my head.

In the evening,  I forgot to check whether I glowed in the dark :)

Scheduling tests

It seems that according to the protocol there is a litany of standard tests that are done prior to finalizing the specific treatment from MRI, to bone scan to CT scan.

It turns out, I have to be the one calling to set up MRI and CT (originally I thought that the nurse would be scheduling them up, same as blood work or genetic test), but it wasn't explained up front. So I called back the hospital on Tuesday to figure out if there is anything else required from me and was asked, by the way, have you scheduled your scans?

An hour on the phone, if not more and I was still unable to schedule anything. Had to drop the call as Max was calling from school and then decided in frustration to think about it tomorrow.

That turned out a good thing. An hour later, probably because I dropped the call, a nurse called and finally got an MRI scheduled for Saturday via emergency entrance.

Now that I am on the inside of the system with the cancer diagnosis it is strange to see how the hospitals create these additional rules and requirements. The few, I think, unnecessary appointments that take up lot of wait time --- required meeting another nurse in order to just schedule a biopsy, or for genetics 101 long chromosome explanations instead of quick blood test; but no roadmap or guidelines regarding numerous scans that are important and not easily arranged, most require different infusions (iodine, radioactive solutions, etc) and have to be scheduled and managed by YOU...