The on-going, first-hand tale of a journey through medical oncology... and what happens after.

Wednesday, June 6, 2007

A Lonnnngggggg Day...

Well, it's finally winding down - the first day of chemo-therapy is nearly finished. I am sitting in my "office" (the brown recliner in the front room), listening to the 5-FU pump cycle through its 3 ml/hour song (whzzzsht) and trying to relax enough to try some sleeping. We are already wondering if the pump sound, once every couple of minutes, will allow a decent night's sleep for anyone in the master bedroom... if it keeps the cat awake, then no one will sleep!

We started out by sending the darling daughter over to a friend's house so we could drive up to the cancer clinic. Traffic is unpredictable, and we wanted to be on-time the first day. We ended up arriving five minutes early, after stopping for gas, but it didn't really matter. They "checked" me in, but we didn't get called back to the chemotherapy area until after 9:30. I was weighed in - 166 lbs! - and then taken to my personal Naugahyde recliner for the duration of the day. The PowerPort was flushed with a saline solution, and then we withdrew a small amount of blood through it (about a teaspoon) for the blood tests. The doctors/nurses are particularly interested in the physical counts (white blood cells, red blood cells, platelets, hemoglobin, etc.), which measure my susceptibility to anemia, neutropenia, and excessive bleeding, as well as the components that indicate proper liver and kidney functions and glucose levels.

Once those data are declared to be within safe parameters for a person my size and weight, they "order" the drugs to be prepared. Ordering means that they fax the prescription across the room to the clinic pharmacy. :) Have they heard of paper reduction? Whatever. Then my prescription is placed in the queue to be mixed, and I am given some anti-emetic/anti-nausea meds both orally and intravenously. Those take an hour to take effect, so the timing seems OK. Then the paperwork arrives! I spent at least an hour filling out surveys related to my medical history (as well as my immediate family's history), my diet (for the anti-emetic clinical trial that I am in), and one other one that I didn't know about (but it was a one-pager, and it's all about the science, right?) And the staff were all very helpful and friendly - but that means plenty introduction conversation of the "hi, nice to meet you" variety.

The chemo- drugs didn't all arrive until nearly 1pm. !!! We finally got them dripping by 1:20pm, after a second nurse had to come by to verify (along with my main nurse for the day): (a) who the patient is - by asking me my name and birthdate and comparing it against my wristband, (b) the prescription - by looking at the original form that was faxed to the pharmacy, and (c) the drugs themselves - by comparing the IV bag labels to the prescription. It is a good safety policy... but it adds time as nurses aren't twiddling their collective thumbs in the clinic, you know. :)

Drip... drip... drip... and two plus hours slowly melt away. We got hungry and got sandwiches from the cafeteria (not bad, really). We drank cran-apple juice and water, and then I would wander to the bathroom every 45 minutes. Between the drinks to quench my thirst, and the liter-plus volume of fluids dripping into me, I kept my bladder plenty busy. The nurse from the portable pump service taught us all about the pump that I now wear for 48 hours. And after the Oxaliplatin and Leucovorin were finished, I got another 20 minutes of anti-emetic-helping glucose/saline IV. We finally left the clinic at 4:30pm for the drive home... arriving there at 5:50pm. 10 hours and 20 minutes after we left. They think that we will only need 5 hours in the clinic next time (which could mean that the day would only be 7.5 to 8 hours long). Yippee.

Next time I hope to remember to bring cards and backgammon. I was able to work for a couple of hours, but the interruptions were too often to get on a roll. There is also a lot of beeping and conversation in the clinic's sound-space, which I found to be hard to ignore today. Maybe I'll get better at that in the future? And there are so many other topics that I feel compelled, and ready, to write about... but now I go to sleep. :)


Anonymous said...

Wow Ed--what a grueling first day. There is a good part of your narrative that sounds straight out of Terry Gilliam's "Brazil"....ask name, check tag, ask name, check paperwork,etc. I do hope it goes quicker next time, and that you learn to filter out the background activity so you can have some (perhaps semi) productive time while this all occurs...I wonder if they make earplugs for cats? Perhaps the cat can find someplace else to sleep?

Rest well,

Sashimi Sunrise Boy

john said...

Call the cat Stockdale. Glad to hear you enjoyed the drive to Portland. Many of the world's problems have been solved whilst spending qt with loved ones. Our favorite dilemma to talk about was what to do if we won the lottery. Yours should be what to do when you kick the cancer. Peace.


Karen said...

Ohio Gozaimos Joe--

The cat has found a spot in the guest room, so that Ed can whirl and click in peace, with no fear of the kitty getting tangled in the tubing!

Enjoy your last week in Japan.


Boo Rayburn said...

Very helpful for those of us on the outside to read and almost hear what it is like to be there! :)

How about some pictures! :) a thousand words and all that!

Paul said...

All that waiting would drive me nuts-- submitting to any kind of medical process requires so much patience. I hope that the nausea is not too severe. Hopefully the folks at the cancer center have suggestions for the times when the meds don't cut it.
Hang in there. I really appreciate your willingness to blog your experience-- it really helps to demystify cancer treatment.

Megan said...


I have *just* finished my 6 mo of 5-FU/Oxylapltin 2 weeks ago. I'm still feeling the side effects, but am finally feeling more like myelf again. If you have any questions along the way, please don't hesitate to email me and ask. It would actually feeel good if I could make something postive out of this ordeal and help out another. (If my email isn't on my blog it's

So, I will give you the short and sweet version of my chemo journey and we can fill in more details later if you'd like. For the first 3-4 treatments you will feel pretty much fine. Maybe a little fatigued, but all in all you won't notice any significant changes for the forst 2 months or so of treatment. Then, you might start to notice that some of the minor irritants (cold fingers, fatugue, a general blah feeling, etc) started to get worse somewhere around treatment 6 or 7, (So that's about 3 months in). At that point I would spnd the few days after chemo feeling like I was coming down with a flu. It would last for about 3-4 days, then I would start to feel better day after day. I think I had about 7 days of not feeling well and 7 days of feeling fine at that point. The effects of the chemo are cummultaive,so whatever side effect you have will slowly worsen throught the 6mop and you will have fewer "good days" eachh cycle. Somewhere around cycle 10 or 11 I started to lose my good days all togtether, but by that point you are almost done and having to make it through a few weeks of feeling crappy feels like a fine price to pay to finally have this over.

Hope I didn't scare you. I just wanted to give it to you straight.

You know that you have the love and support of all your family and friends and even random strangers, like me.