Wednesday, July 18, 2012

The Treatment From Hell

Last Thursday was my 15th treatment...out of 18. I am almost finished. As in, I may be finished after this last one because it rendered me with severe respiratory problems. Here's how things went down (as best as I can remember because it all became blurry after a while).
Thursday morning - got my treatment, all went great, no problems
Thursday night - started coughing incessantly and became short of breath (I have had a cough after every treatment for 6 months, but never with breathing problems)
Friday morning - went to my PCP who looked at me and wanted to transport me to the hospital via ambulance. Before that though, they did an EKG which showed some atrial enlargement and obviously a rapid heartbeat). However, yours truly refused and called my mom to come get me and take me to the ER while my doc called ahead. I then called my husband who was on his way to Lexington, KY to a bachelor party to come back.
At the hospital (my community hospital), I was breathing 50 times/minute, working excessively hard to breathe, and could not complete sentences without pausing for air. They did a CT Scan looking for blood clots or metastasis and a chest x-ray. Both were fine except for the lung spots on my CT that have been there and are not growing at all. Blood work showed a high white blood cell count meaning an infection was in my blood. The ER doctor diagnosed me with bronchitis and bronchospasms and sent me home with only a cough syrup, No antibiotic, no steroid, no inhaler. NOTHING. I was sent home breathing 40 times/minute and still working very hard to oxygenate. Luckily my daughter has a history of asthma (that's not the lucky part), and has tons of Albuterol nebulizers (there's the lucky part). So I got to work using her nebs so that I could breathe better for a few hours at a time.
Over the next 2 days, I struggled. As in, I was SUPER SICK. I went back to my PCP in the weekend clinic on Sunday and he prescribed an Albuterol inhaler and a different cough medicine. I was wheezing and tight in my chest - again, not moving air well at all. Before I left though, he told me to let my oncologist know about everything.
On Monday, I celebrated my 35th birthday the same way I had the previous few days...not breathing well and with a low grade fever, cough, blah blah blah. I notified my oncologist who wanted me in her office.
On Tuesday, I went in to see my oncologist who promptly saw my difficulty in breathing, my blood counts, and then heard how difficult it was for air to move through my lungs when she listened to my chest. She prescribed an antibiotic, a steroid pack, told me to keep taking the Albuterol and cough pills and to come back in 2 days if I was not remarkably better.
Today, Wednesday, after just 2 doses of antibiotic and a day and a half of the steroid taper pack, I can breathe easier. I am still short of breath at times. I am still fatigued easily. BUT I AM MUCH BETTER. It's amazing what quality doctors and common sense can do.

SO here's my beef with the local hospital.
A) I am a cancer patient in treatment
B) You treat us a little different because we are not the "norm."
C) With a high WBC count, you treat with an antibiotic - especially in a cancer patient because it's rare for our counts to be high after a treatment
D) Anyone who comes in breathing hard and fast - you DON'T SEND HOME until they are breathing normally again - especially when the treatment they are on can cause pulmonary toxicity (ie - problems with breathing that can become permanent). Even if a scan or xray doesn't show anything, sometimes it can take several days for an infection to show up on a scan or xray. And I know this because I was a nurse for 8 years (never at this hospital!) and an ICU nurse for many of those. Get it together GATEWAY MEDICAL CENTER.
E) My oxygen level was 95% working that hard and breathing that fast, but as I tried to slow down my breathing, it dropped in to the 90-92% range meaning when I fell asleep at night, it went down even lower (I know this because I have a home oxygen monitor because again, I have an asthmatic daughter).
F) It's a little scary when the ER doctor tells you he has had to google the chemo drug you are on because he doesn't know a thing about it. How about you consult the oncologist... or at least don't tell us that you googled it.
G) You need to STOP coming into the ER rooms and asking for payment - while I am clearly SICK!!!

And I could go on, but I will spare you more reading of my ranting. The point is, my oncologist gets HUGE PROPS for figuring this out and treating me appropriately with the correct medicines. As for more chemo, I am not sure. I am set to see a pulmonologist at Vanderbilt who specializes in cancer patients. Hopefully he will shed light on the cough that I have had for 6 months that reared its ugly head this time. If he says it is NOT related to my treatments, I may forge on for the remaining 3. If he says that it could be dangerous for me to continue then I will STOP. I will not risk my life to try to save it with 3 more treatments. I worry about what will happen with the next treatment which is in 2 weeks. I worry that it will be worse next time. I have lots of praying and listening for God about what I should do. But as always, I know he will provide my answer and it will be my job to just obey and go with it.