And... They Get Me Again.

About two weeks ago, I got a call from the administrative assistant in the medical oncologist's office. "Your appointment is all set with the radiologist. A week before, just call this number, and the Radiology Library will send you your films. Bring them to your appointment."

So today I called. A rushed voice said, "Radiology!" I explained my request. "Well! You need to send me a letter."

Now, this does make sense. Can't have voices on the phone demanding confidential records. But with a week to get this done? Not good.

"That's not what I was told, and I only have a week to get this done." Was my voice rising? Yes.

"Someone's given you the wrong information." At which point I became inarticulate and hung up.

I have since spoken to the medicaal onc's office again, as well as to Patient and Family Services and Risk Management, and found out the following:

* The Radiology Library person should have offered to email me a request form. It's the job of. Each department to explain their procedures to patients; this was not done well in my case.
* Even with this form, I would still need to contact the surgeon's office to get my "external" films -- the ones I went through Hell to get in July.

In other news, the reason my medication info took so long to make it into the LMR is that my first appointment ar D-F was a consultation, and since many patients only come for that, they wait for the second appointment. In my case, this was with the surgeon, who should have signed something then to start the process, but did not. This is a well known break in the system and will be reviewed at the next QC meeting.

And finally, no one knows who the pharmacist was that I met with, or where or what the list of meds was that she had.

My internal films are being sent to me, and I have arranged to get my external films myself. And I am exhausted.

Tachycardia

I've probably pushed myself a bit much the past two days, trying to get errands done before the storm (and before Halloween). The rapid heart-rate stuff is really noticeable. Today, we came home from grocery shopping (not easy) and I walked down to the garage to fetch the second snow-shovel, and by the time I got back up to the car the only sound I could hear was the swish and thump of my heart.

But I slept for about two hours this afternoon, which seems to have helped. The heartbeat's down to a dull roar.

Still, going to take it a bit easier tomorrow, in the hope that I can even get some work in on Monday.

One... more... climb...

I suspect that the climb out of the Chemo Hole may take longer this time, only because it's Treatment Four and Treatment Three was rather devastating in that regard. But I am really starting to look forward -- everything from plans to watch most of the Breeder's Cup races to plans for an anniversary Dinner Out, to plans for Thanksgiving and Christmas and future adventures.

Future adventures. Anniversaries. How wonderful.

And, perhaps, yet more meaning to come. I hope to stay connected to the data management people at D-F in some way, if they want the sort of input I can provide. Going to work on seeing if that's possible next week.

The Last Chemo Train Has Left the Station

Quite groggy from the last chemo, but I just wanted to document that it was nearly as smooth as silk. After listening to my tale of woe from the last time, the lab nurse spent a good 15 minutes finding just the right vein. It was on the side of my wrist, right over a nerve, which made it uncomfortable once the infusion began, but a couple of warm compresses opened everything nicely.

And I had been having a very rapid heartrate, which concerned me -- as I thought, it's due to chemo-induced anemia, which is forcing my heart to beat faster to keep me oxygenated. Kind of like being at high altitude, in a way.

And it seems that my immune system should be back to life in about a month! Just in time to kiss babies at Thanksgiving.

Infusion nurse: "I mean this in the nicest possible way -- I hope I never see you again!"

Arigato Gazimashta to you, too!

Tomorrow, and tomorrow, and tomorrow...

But I have much more to be thankful for than that rather hung-up Danish prince.

Tomorrow is the Last of the Chemo. I am really not fully recovered from the last blast -- still tiring much to easily, and enduring an irruption of mouth sores, rather late. The pain woke me several times last night. Consequently, I skipped church. And the Wonder Family were going to come over for dinner and to make applesauce, but Little Wonder is coming down with a cold; so I forwent the pleasure of their company.

Ah well, subs are a fine meal if you get enough vegetables with them.

VICTORY! (Or something very close to it!)

I spent time today talking with the Risk Manager at Dana-Farber, and then with the Patient and Family Services manager, and then with her and the leader of the IT group for new patient intake.

Turns out the form I was complaining about (ancient word document, formatted for completion on type-writer or by hand, no secure way to send it back, no way to capture its data digitally) is specific to the breast cancer group and maybe a few more. Nonetheless, THEY ARE GOING TO REVIEW THE FORM FOR TRANSFER INTO AN ON-LINE FORMAT and also review the question of how data gets back to them and into The System.

They listened to one patient, and are (possibly) changing the way every breast cancer patient who chooses Dana-Farber experiences the intake process.

I am hugely impressed, and so happy I could dance.

(They are still going to address the medication reconciliation issues. That's apparently a manual process, but once the data is in, it should show up everywhere. But I feel a certain level of trust now that they will track the issue I had to its source.)

Boobeucracy, I will beat you or change you!

So, yesterday I found out that an old work friend died last week of a very rapid form of cancer. I couldn't go to his wake or funeral because of The Immune Issues. Meh. I did have a really good conversation with another old friend in consequence, and am resolved not to wait until anyone else dies before repeating that experience.

And today comes news that one of my cousins was recently diagnosed with breast cancer. Her surgery is Thursday. She reads this blog (*waves*), so send good thoughts Martha's way! Her prognosis is excellent, as is mine, and I am pushing through the discomfort that these two bits of news produced.

Survivor's guilt? Quite real. Silly, but real.

Interestingly, though my cousin and I have the same grandparents on one side, her diagnosis is very different from mine. Fast- vs. slow-growing, estrogen-sensitive vs. "triple negative", etc. Quite different genetics at work.

And the computer here is Not Happy. It failed to start, ran Start-up Recovery, and now I am having to scan everything and reinstall more than 150 MB of updates.  Yes, this is a First World problem.