Chemo Day, Treatment #1

I DID GREAT!!!!

Ok, you know I'm wanting to tell you the whole story, and that I tend to get a little wordy, so I put the best news first. And here's how it went...

Dan and I got to Dr. Amy Bolmers office on Lake Lansing Road at 10:00 am, our appointment time. I signed in, and we had a seat. At 10:20 my first name was called, and we were taken "through the door" and shown to Room 5. (This was the younger black girl that did our initial stuff at our first visit. She did not have a name badge, nor did she offer her name. She was out of the room lickety-split, no weight, no vitals, no nothing. I thanked her anyway. While we were waiting for the next person, I took a look around the room. This looked much like the treatment room we were shown before, with the recliner, 2 side chairs, wall-mounted tv, a magazine basket (with current publications), and of course the IV pole strung with 0.9% normal saline. There were 4 watercolors on the walls, and I said what the subjects were outloud. Dan looked at me funny; I told him I had to remember what they were so I could "blog it". "Oh," he smiled. Each watercolor consisted of a female playing a musical instrument. One with a large set of bongo drums (what are those called?), one with a flute, one a guitar, and the other with a violin. A little abstract, with muted colors of blues and violets, I think. I got up to use the bathroom, which was directly across from Room 5.

Rose came in, the RN who would be working with me, and introduced herself and gave us a rundown on the procedures today. She started with the IV--tourniquet on, looking for a suitable site. I told her my veins were poopy, she asked about a port. I told her of our first visit, when Phyllis had shown us around, and Phyllis thought we would be ok, and that we could do a port at any time, if needed. Ok, she breathed, and kept feeling my arm stroking the veins on the inner forearm, turning my hand over and looking at the back of my hand, then going up to the antecube (inside of the elbow). The conversation had come to the possibility of leaving the needle for tomorrow. She was not real gung-ho about leaving it, but I told her I'd like the opportunity to try, and if I lose it, I lose it, I'll have to get another poke anyway. She moved her focus back down to the inner forearm then, saying that since I have such a good attitude about the likelihood of needing another site, and she hates to send people home with an antecubital needle.... She successfully started a 24 gauge angiocath in the inner forearm, about 3 inches down from the inner elbow, with just a bit of maneuvering after getting through the skin. Good blood flash, Whew. That's in. And it really didn't hurt too bad.

Rose applied an adapter to the hub and pulled 3 tubes of blood, 2 purple tops and a green. Of course, with the small catheter, the vacuum can collapse it, and Rose was very diligent in the collection process. All went well, and as another nurse had stepped in, in just a timely manner, Rose asked her to find a cap for my IV, and she rummaged around in the drawer. They didn't find one, so the other nurse went out of the room, located one, and brought it in for us. Thank you God, for sending in the other nurse. With the cap applied, the IV solution was added and the roller clamp adjusted to infuse quite quickly. Rose left the room with the blood tubes, it was about 1035. At 1050, you know I had been watching that drip rate, and saw that the level was getting low, and yes I did, I turned it down. Rose came in and changed/added another 500 ml bag of NS. She touched the roller clamp, but did not increase the rate back up. That ran for another 1/2 hour, and in the interval, I had to urinate again. I know, but I've been hydrating for the last 2 days, enjoyed my fresh brew this am, and have another 250 ml directly added to my bloodstream... By the way, that solution was "room temperature", and my arm was cool, and my hand was freezing...

Rose came back in about 11:25 with the cocktail: zofran 32 mg, benadryl 25 mg, decadron 20 mg, and tagamet 300 mg, all mixed into a 50 ml bag. She hung that as a "piggyback"--one bag is hung higher than the other, and clipped into the main tubing. When the upper bag is completely infused, physics takes over, and the lower bag starts to run again. The adjusters/roller clamps can be adjusted to run the top bag or both bags, depending on the level of the bags and how the roller clamps are adjusted. The cocktail ran in within 30 minutes. She also had prescriptions for nausea-Compazine and Zofran, I think. During that time frame, Rose asked if we had received any of the stuff they hand out to their patients. No, I replied, we hadn't received anything. She asked if I needed a blanket. Yes, thank you, I replied, and she explained that there are blankets in the room here, but the drug reps bring in blankets for the patients, as well as lots of other things... She trails off and goes out of the room. She returns with a hot pink fleece blanket, with the word Herceptin very nicely embroidered on one corner. She opens it--it's about 4 x 5 feet, and covers me up. That's nice, thank you herceptin person. We talk about the HER-2 receptor status of my tumor, which was negative; herceptin is the follow-up drug for HER-2 positive tumors. So I will not be receiving that drug, I get tamoxifen for 5 years. Rose goes away again and comes back with a cookbook, a pink shoulder pack stuffed with handouts, and a package with a thermometer and literature in it. Whoa. All this, for chemo. She goes over the instructions for the Compazine--you probably won't need anything for a couple of days, but go ahead and get it filled so that you have it. Ok. She also tells me about the Zofran--don't take any of that for 2-3 days, as the dosage that's infusing now will be working for that long. Oh. I wasn't aware of that kind of usage. And I'm consciously thinking that Hey, do you know that you're infusing this benadryl and decadron, it's about half in, and I might be a little woozy or snoozy or something?? These instructions kind of got lost on me. I hope Dan's paying attention. I also ask for a copy of the lab results that were drawn today, and she says that only the CBC is resulted here, the others go out to the lab, but she'd be happy to bring me a copy. And next visit, just ask for those other results. Ok, thanks.

I am feeling a little woozy, like maybe a Long Island Ice Tea sucked down, (only once, I knew that that could be trouble...). It's probably the decadron and benadryl; I've had each of those before. The decadron for sinus infection, and benadryl in recovery after the first surgery, and I remember those sensations, maybe not as acutely as now.

I have to pee, (again), and think I'd better go before this bag is done and the next stuff is hung. I carefully get up and weave myself across the hall and into the bathroom, take care of business, and look at myself in the mirror. Funny, don't look different. Back into the chair, and my wonderful husband adjusts the footrest on the chair, covers me with the blanket, and adjusts the little tray table thing that's attached to the arm of the chair. Thank you, Golfer Dan.

Rose comes in with a bag in her hand as I'm about settled in the recliner, checks the cocktail,
it's done, and adds the new bag to the mainline in the lower port/access site. She says this is the taxotere. I ask her the dose, it's 125 mg in 250 ml of NS. She runs it slow to start, and I see that she's also got the mainline (plain NS) running a little, too. I check the clock; it's 12:00 noon. I ask how long this takes to infuse, she tells me an hour for the first time, they run it kind of slow to watch how you tolerate it. Ok. So she'll be watching me. That's good. And she leaves the room.

I wait for several minutes, look up, yep, still dripping. I'm doing ok, no tightness in the chest, I'm breathing, not sweating or breaking out in an alien rash. Must be ok. Good. I check the clock, check that it's still dripping, check the level, check the iv site, check myself. Several times. Still good.

About 1:00, the level is getting low, and Rose comes in to check it. She did come in about 15 minutes after it started and looked me over, then each time she passed the room, I saw that she did a visual on the bag. She asks me to ding the bell (yes, a little silver bell was on the table, the kind with the thingme on top to tap) when it was done infusing. I said I would, and about 5 minutes later, I tapped the bell. She came in a few minutes later, I told her I dinged the bell, she said she didn't hear me ding. Oh, I said, and then said out loud, "Ding". She smiled.

She closed the roller clamp for the taxotere, and added the cytoxan to the tubing that had the cocktail on it. I asked the dosage: 1020 mg, or 600 mg/meter squared, in 250 ml of fluid. She said this one runs in over an hour, too. Ok. Rollin'. So far, so good. I also noticed that I had a full bladder again, so before too much of that got into my system I once again got up to the bathroom. I was less high, and felt like I was walking much better. (the real question is, was I walking any better?) I checked the mirror again, I was still there. Dan and I had been chatting about various topics, catching up on some of the happenings, looking at magazines, looking at the television. I watched the toxic fluid drip into my vein, and after about 20 minutes there was a little redness of the skin, near the end of the catheter I was thinking. I didn't hurt, wasn't puffy or anything, so I left it be and looked at the clock so I would be aware if I checking it like every 30 seconds or something. The next time I looked at it and poked at it, Dan asked me what I was doing. I told him I was just checking, it seems to be ok, no problem, just maybe a little local irritation. But I'm keeping my eye on it, it's ok. Oh, he says.

The staff is talking about breaks and trying to send each other to lunch and finally they get it worked out. Soon the microwave is wafting out microwaved food odors--my tummy rumbles and I realize that I'm kind of hungry. Hm. Maybe if I'm still doing ok we could stop somewhere to eat on the way home... Rose pauses by the door and eyeballs me, eyeballs the bag. She had mentioned conversationally that they have had 30 patients today, and are finally winding down. I am only too familiar with 1:30 lunches after an 0515 breakfast...

At 1420 the cytoxan has infused, I've only checked the site about 1,255 times, and my hair hasn't started falling out yet, either. I'm not nauseated or sleepy, but I am hungry and a bit "jiffy". (that's the benadryl, and maybe the decadron, I know that benadryl is used as a sleep aid, too, but not for me...) I had mentioned to Rose that I had a couple of questions, but could only remember one. Now I remembered the other, and as she closed the clamp on the drug and opened the mainline further, (there's about a half a bag left, maybe 225-250ml) I ask her about the genetic studies. Oh, she says, and we talk about how that came about, and that she would ask someone in Billing about it. She goes out, saying we're just about done, and that I've done real well.

A few minutes later, Helen from Billing comes in, and asks me about the genetic studies, which she terms "counseling". We talk about our insurance coverage, and she refers me to call BCBSMI to find out if it's covered. Ok, thank you. She leaves, Dan gets on the phone, and calls Blue Cross. After getting through the phone tree and waiting for the next available specialist, she comes on the phone and tells Dan this is not the right number and tells him what the right number is. He is irritated and hangs up. Oh. Yup. Time to eat... And about the time that exchange is happening, Rose comes back in and disconnects the mainline. Yay!!! She flushes the port with heparin and wraps the site with a length of self-adhesive stretchy gauze stuff, bright pink, to help protect it, and declares us Done. Stop at the desk on the way out to pick up your appointment times; Dr. wants a lab draw next week, and she will also see you on your next infusion day. Ok, Thank you again for your kindness. She smiles a weary smile at us. It's about 3:00.

At the front desk, the girl who showed us into our room asked my name again, and handed me a printout of the appointment days and times they had already scheduled. Well, you know me, let's look at these and see if they work. Tomorrow, Thursday, IV hydration, 10:00. Yup, got that one. Next week, lab draw, Wednesday. Nope. Work day. (I hope. Ever hope to be able to go to work...?) I offer 2 alternatives. She counters back that either are available. I ask what is the interval that a lab draw is generally scheduled, she answers 10 days, so I go for the Friday, 11:30. Next, the next treatment sessions. February 6 for chemo at 10:30, and February 7 for hydration, 10:30. I smile and thank her, and we leave.

Wow. I'm feeling pretty good. Just a little buzzed up, but (I think) functional. We head to the car, the fresh air feels good. I realize I haven't urinated for a while and think that it's odd, what with all the fluids I've had. Let's see. 1300 ml in 4 hours, that's 325 ml/hour. I don't think I went to the bathroom that last hour. Interesting.

Oh, here we are at the Flap Jack Shack. Cool. We order, eat, drop the scripts off, and head home. Dan does his thing, I do mine. I write here which takes most of the evening. He has gone to bed long ago, catching up from his travel.

I am watching my hands, as my fingers are getting "tight". I have had another 32 ounces of water, plus about 6 of milk with a pb & j sandwich, and have started urinating again. Hmmm.

I'm about ready to go to bed, it's 11:30 again. Tomorrow is IV hydration at 10:00. I hope that all goes well and the story isn't so long...

Thank you for your prayers and support. That hotline was lit up. And I did need to visualize the colorful path you have created for me. Several times. As I closed my eyes and breathed, I imagined that I had given you each a different color of embroidery floss, or ribbon, or strip of fabric, or piece of rope, all in different diameters and lengths, and that when you are praying for me or wishing me well or sending me energies from your home to mine, your individual pieces of threads have woven together and created a strong mat or cloak to stand on and/or surround me, whatever I need at that time. You are all so awesome in your powers. Thank you, God, for creating the gifts of the people in my world, for giving them each their own special color, and letting their gifts help You to help me. Amen.