#5 Cycle 1, Day 1

My first chemo treatment finally happened on Tuesday, March 25th. I had lots of offers from friends and family to drive me to the appt, but I wanted to go by myself. I wanted to have time alone to reflect, pray, visualize, focus on healing. Maybe it was stubborn independence that I wasn’t willing to give up yet. I mean by this point, my hip had actually improved, I was no longer using crutches, and I could walk independently, granted with a limp. I could still drive, and if you remember, I was having no other symptoms besides the hip pain. I think I just wanted to do my own thing and I feared that if someone were with me, I’d either be obligated to talk to them or entertain them which seemed like more of a burden that I didn’t want to take on.

I showed up to the infusion center which looked new and very nice. There must’ve been 60 stations lined up in rows of 5, each with a chair that reclined and a small counter along the side. All the IV stands stood tall, their metal coating reflecting the fluorescent lights from above making them stand out in my memory. Out of the 60 stations, maybe 5 were occupied. I was the youngest patient by at least 20 yrs, my heart broke as I looked at tired eyes, scarf-covered heads, and the sunken cheeks of the other patients. What kind of cancer do they have? How long have they been doing chemo? Do they have friends or family to care for them? I felt out of place and like I didn’t belong, but I know now, cancer doesn’t discriminate.

I sat in a chair and met my infusion nurse who I was quite fond of.  Her name was Terri. I needed my blood drawn and the other typical med checks, temp, heart rate, blood pressure. This time my blood pressure was 160/108 but Terri was smart enough not to ask me if I was nervous to be there….thank goodness. She just rechecked it later and it had dropped to a more acceptable reading. They brought me a warm blanket and a small airline size pillow for lumbar support. Terri showed me where the remote control for the chair was so I could recline comfortably. I accidentally found out the chair had a “massage” button when I was suddenly startled by my seat vibrating underneath me. The massage was nothing notable so I turned it off.

My labs were processed within 5 minutes and my bloodwork was in an acceptable range to administer the chemotherapy that day. Terri brought me a little plastic cup filled with Tylenol and Benadryl which I had to take before the injections. I wasn’t aware I’d be getting a rather heavy dose of Benadryl…uh oh…I needed to drive home after this and home was an hour away. Oops, I questioned my stubborn independence. I also popped open my pill case and took my oral chemo medication for the day as well as 40mg of Dexamethasone which is a strong steroid I was prescribed to take with my injections. In one of my Myeloma Facebook groups, members started posting pictures with their daily pills, but chose to turn them into a smily face to brighten what is otherwise an unpleasant experience. I joined in with them and made a smily face which in turn brought a smile to my face too….who knew?

When my treatments were set up at the infusion center (which was over an hour south of my oncology office, no doctors on site), I was confused so this might also confuse you as well. Oncologist #1 told me I’d be doing a 28-Day cycle (3 weeks on, 1 week off), but now I suddenly had a change to a 21-Day cycle (2 weeks on, 1 week off) with injections two times a week on Tuesdays and Fridays. Why the change? I tried to find out, but got no answers that I can remember at the center and decided to just go with it for now and ask Oncologist #1 at my next appt.

And then I waited. I didn’t know this at the time, but infusion centers have on-site pharmacies and your chemotherapy isn’t mixed or dosed until you’re at the center and your bloodwork is cleared to proceed. Chemotherapy is not cheap, it makes sense that it wouldn’t be prepared until they’re certain it’ll be administered. I would be receiving three injections that day. The first was Xgiva which isn’t a chemotherapy drug, it’s a bone strengthener. It is given once a month to myeloma patients to stop bone loss from the cancer’s destruction. It also reduces the high calcium levels in my blood, protecting my kidneys from damage. The second drug was Velcade (Bortezomib) which is a targeted cancer drug for myeloma patients and is a proteasome inhibitor, technically not chemotherapy or immunotherapy. It blocks proteasomes which prevents myeloma from growing and dividing. The third drug was Darzalex Faspro (daratumumab) and it contains a monoclonal antibody that targets the CD38 protein found on myeloma cells. It helps the body’s immune system target and kill cancer cells which is pretty cool. This drug is also not technically “chemotherapy” which is why, in this phase of treatment, I wouldn’t have some of the typical side effects that most people are familiar with when they hear “chemo.” I shouldn’t have extreme nausea or vomiting, no hair loss (yet), some fatigue, but not horrible.  Honestly the worst side effects have come from the Dexamethasone, (the strong steroid.)  It causes insomnia, agitation, excitability, jitters, anxiety for 2 days and then after that, comes a massive crash that takes a couple days to get over and can only be combatted by sleep.

As I sat admiring my new slippers and comfy blanket that I brought along, Terri finally came back to me about 45 minutes later.

She carried three syringes inside a plastic bag with a bright yellow hazard emblem on it. She started with the largest of the syringes, the Darzalex Faspro. I pulled up my shirt to reveal my squishy tummy and she picked a spot just to the right of my belly button. It was a subcutaneous injection so the needle was inserted just below the surface of my skin. The viscosity of this drug is thick, like dish soap, but without the bubbles. Terri needed to patiently push the plunger of the syringe for about 5 long minutes. She forgot a chair for herself and hollered to one of her coworkers to bring one over so she could sit while administering…her coworker quickly obliged. The needle only hurt a little bit and the medicine stung for the first 5 seconds, but then the sting went away and I didn’t feel anything the rest of the time for that injection. When that was done, she picked a spot on the left side of my belly button for the Velcade. There was less medicine in this syringe and it wasn’t as thick as the other drug, so it could be administered more quickly. This one burned as she pushed the plunger, I inhaled through my teeth as people often do when something stings and my face winced in pain. At least it was quick. Last she picked a spot on the back of my left arm for the Xgiva. This one was the least painful of the three. Terri stood up and told me that was it and I could go home!

I left the infusion center and took a deep exhale as the warm Florida sun hit my face. I got in my car for my hour long drive home and fought off sleep the entire drive. I really had to fight it, I wouldn’t make the mistake of going alone again. I got home by noon, crawled in bed and slept hard until 5:00p.