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.

Climbing back out of the chemo hole

Yesterday I managed to do some cleaning and make a decent dinner, and that was it.

Today I've done laundry, cooked, cleaned, knitted, read some law to Bravest, and done a few errands outside of the house. Plus, I deliberately parked further away from where we were going than I needed to, in order to walk further.

My legs were quivering with exhaustion by the time we got home, but nothing that a few hours in the reclining chair didn't cure. Too bad I have to wrestle with the larger of our two cats over Chair Control. He always loses, but he's persistent, which makes sleeping an interesting proposition.

(The cat in question, James Boswell, is just smart enough to know he's not human and to be annoyed about it. Our other cat, McLeod, likes being a cat just fine, and is consequently much easier to get along with. Naturally, I love Boswell best, and spend much time being nice to Cloudy to make up for my poor taste.)

Third day == heavy day

It's pretty clear now that the third day after chemo is the one where everything crashes for me. It's the day that makes you realize you really have been poisoned. There's no way to "power through" the weariness, as I can do on most other days.

Thank goodness, the Wonder Family did our grocery shopping with impeccable attention to the list I sent them yesterday, when I still had a functional brain. The ice cream got into the freezer right away, but it took me several hours to get the rest of it stowed.

I filed a Patient Safety Incident on-line form with Dana-Farber, and a legal eagle friend in NYC has advised at least discussing this situation with a similar person up here. Just in case. Spouse and I are agreed that we certainly do not want money from them; we just want to know with quite a great deal of specificity how this problem will be corrected.

Actually, what I really want is to sit down with someone in their IT department and find out why they have a perfectly lovely on-line form for safety incidents and are still using a form they expect patients to print out and fill up by hand for new patient info. It makes no sense, no it doesn't.

Till We Have Faces (Warning, this one is religious)

Today I was mistaken for a man. A man knitting a tiny little purple-and-pink child's hat.

I was in the waiting-room of my doctor's office, waiting to see the nurse practitioner who administers my Neulasta shot. The room was crowded with folks waiting for flu shots. One of the ladies sitting by my had Down's Syndrome, and as such people often are, she was quite friendly. We got to talking about this and that, and then an older, rather pleasant-seeming gentleman sat down across from me, and said (but entirely without offensiveness), "Well that's great, a man who knits!"

He was so pleased, I was sorry to disabuse him.

And you know, I really was not offended. Because I am post-menopausal, my face has started to lose its female specificity, and is now, as Ursula K. LeGuin puts it in Left Hand of Darkness a human face, neither male nor female. And with my bulk and no hair, I really could be either, until you see me smile.

And I remember a tiny little Baptist church I visited once in Georgia because it was the closest church to my temporary home. I was the youngest person there by far, and I never went back -- it was one of those places where men and women pray separately because otherwise a man might end up being instructed by a woman's prayer, and that would Never Do. But I clearly remember all the very elderly women, and their deeply kind faces that, other than their hair and earrings, were neither male nor female -- just the face of people who have loved Christ and lived Christ all their lives, to the best of their knowledge.

My knowledge of Christ is very different from that which shaped those lives, but I hope that as I age, I show His face in mine that clearly. And since in Christ there is neither male nor female, why should someone's mistake about which I am matter? And besides, how cool would it be to be a man not embarassed to knit a tiny little purple-and-pink child's hat in public?

The details devil strikes again.

So today I got to meet with the lady in charge of mxing my near-death-dealing potion, and found out that three critical meds -- the ones dealing with my high blood pressure -- were not on her list. No explanation has been forthcoming as yet. I expect to expend significant energy units on this tomorrow.

And the IV was placed in my hand again, it felt better. Unfortunately, what was a great blood return at 8:50 AM was barely there at 11:30 or so, and gave up completely 2.5 syringes in. And it took three tries and an additional expert to get a workable vein going.

The problem seems to be that my veins, in two cases, just said, "Enough!" Not that veins talk. No. They act, rather decisively. The third time, the insertion was too near a place where two veins join. This really restricts the flow of blood out; the IV fluid was pouring in like mad, and the infusion nurse could feel the vein bulge when she put pressure on the line, but no return flow.

They were surprised when I wasn't angry. I'm saving angry for the medication botches.

WOW is a wonderful chemo buddy.

It's strange looking at that there hairy picture.

I'm already used to being bald -- isn't it both strange and wonderful how the mind adapts to changing circumstances? For example, I love to have my face and neck right on the pillow when I sleep, and thus was always thrusting my hair out of the way. No more of that; and I am also enjoying never reaching for the comb or hairbrush after a much, much shorter shower.

Not that I'll be sad to have hair back. But I wasn't expecting to enjoy being hairless at all, and lo, even this cloud has silver tints. And not by Clairol!

I did make it into work, and even managed a small amount of yard work this afternoon. Chemo tomorrow.

No news is no news.

Next chemo treatment is Wednesday, and I am very much enjoying having an extra day or two to feel pretty good (though tired) in. I have even eaten spicy food TWICE.

This time around, I got a sore between two teeth, and the after-effects have proved stubborn. Otherwise, all is status quo. Hair continues to fall out, blood pressure continues to be a little wonky, tiredness continues to continue. I am still trying to drink what feels like inordinate amounts of water. Food continues to taste a little bit funny.

And the Neulasta arrived right on schedule!

Tomorrow, I am going to try and go into work for a meeting. This will be a longer drive than I have tried so far, though not much longer than my weekly Whole Foods pilgrimage.

I ain't nothin' but a houn' dawg...

... sheddin' all th' time.

Today there was some serious molting, and the bare patches spread like a glacier in a new Ice Age. Also, the mouth sores, though not as bad as chemo week 1, are back in a fairly major way. I am not as unwilling to have them, though, as they are alerting me to the state of my immune system.

I've been able to work both days this week, and expect to put in about 19 hours. This will keep me in yarn quite nicely!

Hare today, goon tomorrow.

Yes, that's the punchline from the famous "Little Rabbit Foo-Foo" joke, boldly appropriated by me. Currently:

• Most of the hair is gone, though there's enough left to make the truly bare patches look ...disturbing.
• I have a new appreciation as to why men with short / no hair wear hats. I am wearing one well-nigh constantly.
• On the other hand, when I need some radiational cooling, it's available at the drop of a hat!
• There may not be a whole lot in my head, but there's certainly enough space for whatever's there -- in fact, if I didn't have a pronounced double chin, I'd look quite top-heavy.
• Our smaller kitty has decided that the top of my head is very nice to lean against.

Today was a quiet day, though I did manage to cook a real dinner (sauted chicken breasts in a shallot pan sauce with baked potatoes and broccoli.) And tomorrow, I'm going to try and do some work.