While it’s still fresh in my mind, this is what my treatment days are like, in case you’re interested. If you’re not, you don’t have to read this – I understand.
My appointment was for 9:20, but we always arrive at least 10-15 minutes early, because we leave early in case there are problems with traffic and stuff. I check in at the front desk. P always has a cheery greeting; he signs me in and takes my money (co-pay for every visit), then lets the team know I am here. I have to fill out a check sheet every time, which is basically any symptoms I might be having that are ongoing or new. They have a neat system that I’ve never seen before; on the print out that goes to the team is a short description of what I’m wearing and hair color. This way nobody has to stand at the door and yell, the team member comes right up to me – it seems like a great system and seems much more personal!
Waiting time varies depending on patient volume and how much time each one needs. I love that I never feel rushed – even with the doctor – because each staff member takes all the time we need for questions. Once it’s my turn, there’s weight, oxygen levels via a little thingy that encloses the end of my finger (it has a technical name, but it escapes me at the moment), temp, pulse, and blood pressure, to be recorded. Then it’s into a room to wait for the team leader (J today as my regular K is on vacation this week). I was more anxious than usual today as I know Friday’s blood work included a test for tumor markers; my first test was high but not too bad at 70.3. Testing for these markers over time shows increase (tumors growing or not responding to treatment), stays the same (no response to treatment), or decrease (tumors shrinking or responding to treatment). My result was a 34 – just over 50% decrease. That combined with the fact that my cough went away (the initial reason I went to the doctor) means the treatment is working. So we were pretty happy with that result (euphoric is more like it). Now just because the marker decreased doesn’t mean there’s a cure in the making, but it does mean we can manage the disease for now.
J went over the protocol for the new drugs; answered a bunch of questions; checked out a few things like lungs, heart, etc. Then we were ready!
The infusion room wasn’t as busy today and we were able to easily find a recliner with visitor chair. The room is divided into 3 sections with 8-10 recliners in each section. J gave my chart to one of the nurses who took it to the admixture room (where they mix up the IV bags). Then we had to wait some more for everything to be mixed up after I signed a consent for today’s treatment. That included a long list of possible side effects, none of which I want to have! Things like tingling in fingers and toes which could lead to permanent nerve damage; hair loss; nail loss (didn’t know about this one); mouth sores; low red blood cell and platelet counts; increased susceptibility to infection and bleeding; and the usual constipation, diarrhea, nausea, vomiting, etc. And I’m sure I left some out!! But if it knocks down the tumors, I’ll deal with the consequences!!
C was my nurse today and having the power port made it so much easier for her and for me as she didn’t have to find a good vein, and I didn’t have to worry about more bruising to my delicate hands. (Ha ha) Today there were 3 pre-treatment drugs in small IV bags; one anti-nausea, one antacid, and one antihistamine. Then it was time for the heavy duty stuff. One bag went in over a 2 hour period after an initial very slow drip to make sure there weren’t going to be any major side effects right away; the next one over 30 minutes. Both were in small bags so I didn’t feel like a blimp from all the fluids when we were done. There was some pre- and post-treatment flushing of the port and we’re done. And by the way, when the saline is pushed into the port I can sort of taste it – is that weird or what?
I spent the time listening to my iPod; talking with other patients and the nurses; reading; and talking to Steve, who got antsy so I had to send him home for a while. The patients exchange tips and information, which is great. There were a couple of new people and everyone chipped in to let them know what to expect – great camaraderie!!
We were home today shortly after 2; much better than last time when it was after 5 by the time we got home. I’m feeling good but on my guard for any symptoms of those nasty side effects. C told me to call any time if there were any side effects, and if I wasn’t sure if I needed to call or not, to call anyway. There is always a doctor on call 24/7.
I certainly feel fortunate to have this wonderful group of people on my side. Everyone, from business office, to schedulers, to med assistants, to nurses, and nurse practitioners, and the doctor, has been just wonderful! We can’t say enough good things about them. They are always upbeat yet business-like. The nurses in the infusion room are always joking around with each other and with the patients – it’s almost like a big party. Yes, cancer is serious, but that doesn’t mean there has to be a bunch of long faces; we have enough of that when we’re at home and talking about treatment and symptoms and contingency plans and all that sort of stuff.
And I feel fortunate for my family and friends who are cheering me on and taking this journey with me – you rock!!
I am blessed.