Chemotherapy: Day 1

Bryan has used an expression for as long as I've known him. "Goat rope." As in, "Getting that plan approved was such a goat rope," or "Fixing that mess was a real goat rope."

I don't know its etymology. And the best way to define the term is to give an illustrative example of it.

Therefore, I humbly present My First Day of Chemo: The Goat Rope

We left at 8 AM. Dropped the kids of at Betsy's around 8:30. Got to the Rocky Mountain Cancer Center at 9:00 AM because I was told by a certain person to get there early so I could sign necessary paper work.

I'm not going to tell you her name. And I'm not going to tell you about the "Chemo training" I did a week or so ago, nor am I going to include her in today's description because none of it leaves her looking too great. Bryan wants to know when I'm going to "dime her out" on the blog.

I'm going to try not to.

Suffice it to say, there was no paperwork signing.

I was brought to Markus' exam room at the appointment time, 9:20. LOTS to tell you about Dr. Science. He'll get his own blog posting. I got an answer to the name question and--

What's that?

You want to know what that answer is?

But it's part of a sub-story, part of a whole different post.

Really? I have to tell you now?

Fine. Briefly: It's a family name. Great story behind it.

And also, briefly, I really like Dr. Markus. Today was a big day for me in terms of how I was doing with him. More on that later.

At this point in the morning, I was feeling really great. Very good mood A "It's a great day to start chemo!" kind of mood. I even joked with the tech who took my vitals. I asked him how he was doing, and he said, "Well. . .it's a Monday."

And I said, "At least you're not started chemotherapy today!"

And he said, "Yeah. That's true."

He took my blood pressure with a stethoscope and pressure cuff. Who does that anymore? I've had my bp taken all over town in the last two months and everywhere I've been, they've used these free-standing auto-bp machines. I could strap myself up, press the button and get the very same reading as one who has a nursing degree!

I said to him, "Are the workers here thinking of unionizing and demanding that you get those machines to take bp? I mean, this is old school."

He didn't say anything to that, either.

After a little consult with Markus, we went to the "Infusion Suite."

Yes, that's what they call it.

I hadn't seen it before that moment. The word "suite" certainly conjured a specific expectation.

I don't know if "infusion suites" are like this all over the country.

And I don't know why they call it a "suite," aside from the fact that this euphemism is probably better for keeping the dread to a minimum in patients like me.

All of which is to say that, while I didn't have high expectations, the expectations I did have were sorely and horribly undercut. Like a punch to the gut, really.

A big room with a vaulted ceiling that let in natural light. Rows of fluorescent lights as well. A strip of inset light bulbs running down both sides. The nurse's rounded, high desktop on one end. Rows of vinyl rocking recliners in either hospital-green or Floridian-motel-flower motifs. Arranged into quadrants so that, in their rows, they face in, with floor space in the middle of each. The longer sides of the quadrants had 3 recliners, the shorter ends, 2. A little, rolling, Formica-fake wood table between each chair.

The same Formica-fake wood book shelves here and there. One stocked with some paperbacks. One full of National Geographic magazines. Lots of other magazines scattered about and available. Individual bathrooms on the nurse's end, and a snack station next to there with juice and pretzels and so forth.

A table with a jigsaw puzzle in progress.

TV screens in the corners, but these were not on, which I was glad about.

And, of course, a lot of cancer patients. All hooked up. A stand with a green box next to each recliner with a bunch of plastic bags suspended at the top. Drugs dripping down. Most of them over 60 or at least looking like it. Several old couples where one was accompanying the other, and the other wasn't looking too great at all. A young man, maybe 20, there with his mother. A young woman--what? 18?--there with two friends. Morbid. Absolutely breath-taking how sad the entirety of that picture was.

There were "private suites" available. These were hospital rooms, with beds, not recliners. And they strongly preferred that I not do one of these for the first time so that the nurses could keep a clear eye out for me in case of a bad reaction.

Bryan and I took a pair of recliners, I at the end and he in the middle. This is key. Why? Because how is a patient supposed to be treated if she's a middle chair???? Where does her stand full of drugs go? Not to her side. Not in back--for how, then, can she get up to go to the bathroom? And not in front, really--for then the cords would be stretched pretty far and there'd be a real risk of obstructing the traffic of other cancer patients wheeling their drugs stands around.

That is, clearly the middle recliners should just be used by the friend or family member who has come with. And most patients had someone.

So when Bryan was out of his chair to go make more appointments for me, and a lady came and sat down in it (when there were LOTS of other seats to be had), I whispered to the nurse at hand, "She's in my husband's chair. . ."

And this nurse said, "She's the patient. She gets to sit where she wants,"

WTF?

This is my first infusion of chemo. And it's a middle chair! You want her on an end seat anyway!

I just. . .was so taken aback, and was so emotional to begin with, I teared up, and the nurse just said, ridiculously and impotently, "Sorry. . .He can pull of one of those chairs." She pointed to the puzzle table.

Yeah. Why don't we ask him to sit in a wooden chair with no arms for the 4 hours of treatment?

I was just about to launch into my case, and it would not have been very gracious or kind or gentle, when the two ladies across from me in my quadrant got up to leave. The one who was there as a friend told the lady next to me that my husband was sitting here, would she mind moving, and she did. So nicely. So graciously. The departing lady put my bag on Bryan's chair to "save" it for him.

And so we learned our first trick for coping in the Chemo Warehouse: Save your seat.

And yes. That's what I'm calling it from here on in. "Suite," my ass.

This kind gesture from the lady leaving, the lady moving--it all made me cry, too. Very touching.

After being in our seats for almost an hour, we learned that the hold-up on the treatment was that they needed to see the chest x-ray that confirmed the port placement. It hadn't been sent to them.

Should the hospital have sent it? Yes. But should my case-worker have checked for this ahead of time, given that 10 days had elapsed since the surgery day when it was taken? Yes. But She Who Shall Not Be Named apparently hadn't gotten on that.

But this same "She" came to me with the paperwork to sign--fine, we were waiting anyway--and said that Mayfield had gotten on the phone himself and the x-ray would arrive in minutes.

Yay Mayfield! It was a bright spot in my morning to hear about him in this way.

And then the hunt-a-port game began. This isn't a valve like you find on a blow-up pool. I kind of thought it would be, but I see the point of having the whole thing sub-epidermal. No, a needle goes through the flesh to get the port.

The day of the surgery, Mayfield described how he'd put it in, and that he'd have to go deeper in because I was "thin" and didn't have much sub-cutaneous fat there. ("I'm sorry, could you say that again?...")

And, he explained that it's a balance between placing it for port access and keeping cosmetics and comfort in mind. (My seat belt goes right across there. For a whole year. So, yeah, deeper is better.)

Then he said that he'd place it so it wouldn't stick out too much and look "all weird." And I said, "Right. Because we don't want my chest to look deformed or anything." This chagrined him a bit.

What I know about the port placement is that it took 4 tries because I "have an unusual anatomy." The vein just wasn't where it was supposed to be, and Mom pointed out that Mayfield was able to reach under my collar bone, which normally doesn't happen either. (The port is on the left side, under the left collar bone.)

ALL of which is to say that when four different nurses tried to access the port, without success, they started to ask "Who placed this?" and, "He should have moved it," and other kinds of snide remarks.

And I, the one lying prone on the extended recliner, having not numbed the area with numbing cream because She Who Shall Not Be Named failed to call in the prescription along with my other meds, who had only sprays from a numbing can to use, and even then could only have two of those lest the stuff burn my skin, yes, I thought to myself, "Uh uh. No one talks badly about Mayfield! Stop complaining, you incompetent heifers, and just get the job done."

This was monstrously unfair of me for several reasons. A) These women were not "heifers" in any sense of the word. B) They were really frustrated, mostly because they could see me wincing and crying from the pain of it--didn't even know I was crying until Bryan used three tissues to mop up the vinyl recliner and C) the whole day, they were very compassionate and professional and kind to me. All of them.

So I'm glad I just thought that bad thought and didn't actually say it.

And when they gave up, 15 minutes into it, one said, "You can go ahead and cuss if you need to." Nope. Not me. I'm good.

The biggest obstacle was probably the swelling that hadn't gone down totally. We iced the spot for about 10 minutes, which helped to numb it somewhat. They had tried most of their attempts with a one inch needle. The upgrade to the 1.5 inch needle helped and, finally, Nurse Kate, yelled, 'I got it!' and then pumped her arms in victory.

I asked her if she'd be here next week, now that she knew the trick of it. (Something about going in on an angle. . .)

After we left the RMCC, Bryan told me, "They perforated you!" He'd watched it all and counted 23 pokes before she got it.

The drugs started. They go in one by one. The nurse warned me about the reactions to watch out for to one of the toxins. I should tell them immediately if I feel this, this or that. Then she said, "You have less than 1% chance of having these reactions, so don't worry."

I said, "I had about a 0.5% chance of developing this particular cancer at age 34. So I might be on a roll."

She looked at me funny.

No particular feeling from any of the drugs. I read for a little bit. Brought a portable DVD player and watched High Fidelity. Chatted with Bryan. Spent a lot of time thinking about what they could--reasonably--do to make the Chemo Warehouse into something that kind of resembled a suite while also allowing the nurses all the access they needed. Note to RMCC: I've got lots of ideas!

Everyone in my quadrant had witnessed the port ordeal. As they finished up and left, one by one, each one said, "It will get better!" or "Good luck with everything!" Very kind. Made me cry.

The lady who moved, got up a few times to stand right in front of me and. . .do her part for my morale, I guess.

I didn't want her to. I didn't want to hear her sad story. (And it's a doozy!) I didn't want to hear her little cliches about how to deal with it (E.g. "day by day," "count your blessings" et al.)

She expounded on how she thought her baldness was "cool," that because of it, she's now "more comfortable with her looks than ever!!!"

You know what? She'd had a lumpectomy. Stage 2 cancer. Little hunk missing. I wanted to say, "Yeah, I've kind of already had the 'looks' conversation with myself," but what was this? A qualifying round for the Olympics of Suffering?

So I didn't mention it. Just thanked her. It was good of her to want to be so supportive.

And I guess that's the bright side of the Chemo Warehouse--that there's some sort of sharing of the experience. The downside of this shared experience, of course, is that I really don't want to hear about other patients' troubles right now. Maybe a little while into this, I'll have the presence of mind to offer to pray with people, because that's about a billion times more helpful, I think, than the cliches we've already all heard. But today, I just pretty much didn't want to be there and couldn't get past the sneak-up-on-me-grief over this new reality that I am a sick person who needs lots of horrible drugs to be pumped into her body.


This first treatment was extra-long because the H protein had a long first dose and because they started the toxins at a slow rate. It all stopped dripping at 3:40 this afternoon. We were headed out by 4:00.

And as of 9:52 PM Monday night, I'm feeling some GI-track issues, and a bo-bo belly, but no nausea, and nothing else of note.

Day one done. Thank God. And a huge thanks to Betsy and Amy who had the kids all day long! What a blessing that was to know we could stay there as long as we needed to without any worry. : )