10/4/19: Chemo Cycle #1 of 12 + Lupron + Social Worker Visit

Warning: This post contains photos of my accessed port.

The actual process of receiving chemotherapy turned out to be pretty uneventful. That's good, because it means I didn't have any kind of allergic reaction to any of the drugs today. Ken came and stayed with me the whole time. He got a lot of grading done.

My physical therapist did not pop in, but the social worker did.

When we arrived at the Cancer Center, the familiar face at the reception desk recognized me and checked me in without asking my name. On the one hand, it's a little depressing that I am there so often that she knows who I am; but on the other hand, it definitely makes for a much more warm and welcoming experience.

I had a 10:30 appointment with the port nurse. She accessed my port in preparation for chemo, but did not draw blood today because she said they got all the lab work done yesterday. I had put the numbing cream on a little over an hour earlier, and it again worked like a charm; I didn't feel a thing when she inserted the needle. I'm a little curious to know how much it might hurt without the numbing cream, but the area is still bruised, and I guess that's not something I really need to find out. Haha.

We went upstairs to the infusion room. A medical assistant took my vitals (height, weight, blood pressure, oxygen, and temperature), gave me a tour of the facilities (there's a cabinet with warmed blankets, and a small kitchen with snacks and drinks and water), and brought me to my "bay" (a private curtained off area with infusion equipment, a recliner for me, two simpler chairs for company, and a TV).

Looking around, at first I thought I might be the youngest patient by a couple decades. But then I saw a young woman, maybe in her 20s, with an older couple I assume were her parents. It wasn't clear at first who the patient was, but later on I saw the couple sitting in guest chairs.

Around 11:00 my infusion nurse came in. The same nurse is listed on all my upcoming appointments that are already scheduled, but I don't think it's guaranteed that I'll always get the same nurse for future appointments. She was friendly and knowledgeable, maybe with a kind of business-like way about her. I wonder if sometimes, having that kind of demeanor is a conscious decision for someone who works with cancer patients all day.

We started with the pre-medications that the oncology nurse had told me about. First I took 2 Tylenol by mouth (to ward off fever), and then the infusion nurse delivered the pre-meds one by one via IV through the port. First the steroid (name brand Decadron), then the Benadryl, then the Pepcid.

Around 11:40, after I had just finished the Benadryl, the social worker came by. The infusion nurse told her my Benadryl was about to kick in, so I might be kind of out of it, but she knew I hadn't had any contact with the social worker yet, so it was still a good idea for us to meet when she had the time.

I'm glad the infusion nurse had given the social worker the heads up, because not 5 minutes into our conversation, I realized I was focusing really hard to understand what she was saying. When I opened my mouth to answer a question, I was surprised at how quiet my own voice was, and how slow my words were coming out! I felt kind of loopy, and it took a lot of effort to talk and stay awake. I am sure that if she hadn't been there talking to me, I would have fallen asleep!

Anyway, she was really nice, and she gave me information about a breast cancer support group that meets at the Cancer Center. I know that at least half a dozen friends of mine have mothers who had/have breast cancer, but I don't personally know anyone my age who has been diagnosed. I'd be interested in seeing if there are any women around my age in the support group, but the meeting times are actually pretty inconvenient for me, so I'll have to see if I can make it work.

We spent most of the time talking about how to talk to our kids about my cancer. She gave us some helpful resources, including a book list which might work well for our kids, since they are both avid readers. One really important piece of advice she gave us is to not assume that our kids are fine just because they aren't talking about it with us. We should make a point to check in with them at a time when they feel safe and comfortable, and give them opportunities to ask questions, so they know it's okay to talk about it.

Towards the end of the social worker's visit, just before 12:00, the last pre-med finished, and they started the Herceptin. This is the targeted therapy that they deliver in 90 minutes the first time to make sure it's well-tolerated. Since it went well today, in future visits they may be able to decrease the delivery time to 30 minutes.

After the Herceptin I got the Taxol, which takes 60 minutes to deliver. When the infusion nurse handled the Taxol, besides just putting on gloves, she also put on a protective gown, a precautionary measure because topical exposure is harmful. It seemed kind of funny because, gee, I'm getting that toxic drug pumped directly into my veins!

All this time, I was diligent about my water intake. One of the informational handouts I received on chemotherapy said to drink 2 to 3 quarts of water every day. That's a lot of water! I met the goal today, but it did mean having to pee a lot. I literally had to pee like every half an hour. The IV system can run on battery power, so I just walked the IV pole into the bathroom with me. I know this is no time to feel self-conscious, but I felt self-conscious wondering if everyone who could see me thought it was amusing or weird how frequently I was using the bathroom. Haha.

I should mention, too, that since we were in the infusion room during lunch hours, we both got free lunch! There was a menu from which we could order a soup or sandwich, fruit, chips, dessert, and a beverage. It was a nice perk.

I read a few pages of a book I brought, and nodded off here and there. A lot of the time I felt kind of foggy, so really couldn't do much but just sit and rest. I could hear people in other bays watching TV or talking with their support people. Maybe once I get used to the meds, I can use the time to read or play my online games, like Scrabble and Boggle and Candy Crush! They do have free wi-fi in the hospital.

The infusion nurse also said that if I handle the meds well, I might be able to drive myself to future treatments! That would be a huge help, if Ken doesn't have to take as much time off from work. Mostly they are worried about the Benadryl causing drowsiness, which would be dangerous if I drove myself. Today, I definitely felt out of it, and would not have been able to drive myself home safely. But if I handle the chemo drugs well, they might be able to reduce the pre-med doses, and I might be able to take some orally instead of through the port. We'll have to see how things go.

Around 2:30, the infusion nurse de-accessed my port.

The only thing left was to give me my Lupron injection, but we had to wait for it to get delivered from the pharmacy department. While we waited, the infusion nurse gave me my blood work report that I had requested, an informational handout about Lupron, a visit summary with future appointments, and a super helpful printout of guidance regarding when to use which medication, what to do if I develop particular symptoms, recommendations on how to maintain my health during chemo, and when to call the doctor.

The Lupron injection was just a quick shot in my butt. I'll be getting it every 4 weeks, and the infusion nurse said we would alternate which side to use for the shot.

We left the Cancer Center at 3:00. All told, it was almost exactly 4 1/2 hours, just as the oncology nurse had estimated.

So here's a photo of me in the infusion chair, next to my IV pole. And then a close-up of the accessed port, which is covered in protective dressing.

I might still post a photo of the bare port, if it ever calms down. Right now, the incision still looks raw, the area immediately surrounding the port is bruised, and the wider area is rashy with redness and bumps. I've taken photos for my own records, and they aren't pretty!

Back at home, the only thing I noticed is a bit of dry mouth, which I think is a side effect of the Taxol. That's just more reason to keep up with my water drinking!

Apparently a lot of chemo side effects tend to show up a day or two later, but the one that might come up on the day of treatment is that feeling of "being wired" due to the steroid pre-med. I wouldn't say I feel "wired" in a jittery way, but I am up at almost 11:00 PM on the day of treatment, so maybe that is something. (Though I am usually a night owl anyway.)

I was encouraged that the infusion nurse echoed the other oncology nurse and said that with my low dose of Taxol, the risk of nausea is low, especially because I did not get morning sickness when I was pregnant. She said women who had bad nausea during pregnancy tend to get nausea with chemo as well. I did get nausea, but not to the point of vomiting, and I seem to remember it being more like nausea triggered by specific smells and food, not necessarily like a stand-alone, all-present nausea. So I hope that counts for not being at a particularly high risk for nausea now, especially if I take care to stay hydrated, and am careful about what I eat.