Every three weeks since early January, I’ve gotten up early to head to the city for infusion day. Today is another one in my prescribed course, and I thought I’d take you along for the ride.
A little bit about me – I am a 44-year-old, married, mother of three and a self-employed graphic designer. I was diagnosed with breast cancer last Thanksgiving and will have treatment until early next year, with reconstruction continuing well into next summer. My prior post detailed my journey of discovery. This is a detail of my “everyday” with breast cancer.
My alarm went off at 5:45 a.m. I quickly shower, check the seeping spot in my right chest wall stitches, and massage all the shower water and serum out of my open wound. As I dress, I double check the seepage and apply a super thick, overnight maxipad to the inside of my tank top to help catch any leakage. About a month ago, I had to have one of my breast expanders removed due to radiation tissue damage and my body is having a hard time recovering. I still have half of the stitches across my right chest, which I monitor daily for leaking fluid and try to keep as clean and dry as possible.
I leave my house early at 6 a.m. to beat Chicago traffic. Rush Medical Center is only 10 miles from my house, but it can be as much as an hour commute, depending when I get on the road. There is no prep work on my part at home – only assembling my bag for the day and packing a snack. Early on when my regime included chemo drugs, I had to take a few drugs the day before and the morning-of infusion. Today I will only receive targeted treatment drugs, not chemo, and the preventative side effect drugs aren’t necessary. I won’t be sick after this infusion.
Once at the hospital, I head to the 10th floor cancer unit. No matter the type of cancer you have, all patients are treated here. When you enter, you take a number, and someone behind one of the 10 registration desks checks you in, gives you a bracelet, a questionnaire and a series of stickers with your name, medical records number and your date of birth. You can also grab a mask if you have a compromised immune system and sanitize your hands nearly every 10 feet.
My next stop of the day is triage. I have a port installed near my left clavicle. Once the team of doctor’s gave me my diagnosis and prescribed a treatment plan, I knew my veins would not withstand the number of infusions they wanted me to have so I opted to have this port put in under my skin to protect my veins. It’s a small box, roughly the diameter of a quarter, maybe a quarter-inch thick. It has two snake-like tails coming out of it, one going into a vein in my neck, one going into an artery pointed toward my stomach. Each infusion visit I have to have my port opened. Only the folks on the 10th floor cancer unit are able to “tap” it. The rest of the hospital operates on veins in your arms – at least that’s my experience. The cancer unit nurses know how to “open” the port and have the right equipment to do it.
The triage nurses take my pulse, weigh me and take my blood pressure. They sterilize the skin above my port with an alcohol wand, and we sit together until it dries completely. There’s a quick count to three, and the nurse plunges a one-inch needle into my port’s target, check for flow, and we’re off to the races. Typically they pull blood vials for a CBC. (A complete blood count (CBC) is a blood test used to evaluate your overall health and detect a wide range of disorders, including anemia, infection and leukemia.) My oncology doctor will evaluate the CBC before I’m able to receive infusion. I have been anemic and also low on potassium in the past. Being anemic required I have a transfusion before my mastectomy surgeries this past spring. The CBC vials happen every three-week visit.
Once I’m “open,” I head down to the seventh floor to meet the new doctor on my team, who is a gynecological oncologist. I have Invasive Ductal Carcinoma, stage 3, and I am triple positive (estrogen, progesterone, her2 neu positive). These characteristics helped determine my course of treatment – which chemo drugs I received, the type of surgery I chose, the radiation treatment, etc. – and one of the recommendations presented to me was to have my ovaries removed.
The room looks like a typical exam room, stirrups and all. A resident student interviews me, my family history, my past surgeries, anything relating to the birth of my children or trouble with my female parts. The doctor is direct. “This will end your periods. You will immediately go through menopause. The process is different for everyone. Hot flashes. Mood swings. Sleeplessness. Vaginal dryness.” The list goes on. My choices are to have this elective surgery, a shot in my stomach once a month or wait it out and let my body go through menopause on its own. My oncologist sited several trials where the prognosis for patients similar to me were much improved. I decide to schedule it, regroup with my oncologist on the urgency of it and plan to cancel if I can’t make it work with my family.
With a mind fully overloaded, I head back to the 10th floor for my infusion treatment. Off to the southeast corner of the floor, my favorite oncology nurse, Christy, is waiting with my drugs. She’s the bomb. Super cute and sassy, while completely on top of her game. She made my anaphylactic reaction to Taxotere palatable and that was a scary moment. When I was receiving chemo infusion, I would get four bags of liquid drugs. The two chemotherapy drugs I had were Taxotere and Carboplatin. They took about two-and-a-half hours to complete, total. I had six sessions with those two bags plus the two targeted infusions – Perjeta and Herceptin. These two targeted infusions are not chemo drugs, but are specifically targeted for my “her2 neu positive” cancer trait. These are the only two I’m getting today and for the rest of my infusions until January. Each bag is half an hour. Christy hooks up all the little IV lines directly into my port, flushes me with saline – which I can taste, and it’s gross – and off we go.
During my chemo treatments back at the beginning of the year, Christy had to front load me with all sorts of anti-reaction drugs so that I wouldn’t have horrible side effects to the drugs. It didn’t really work, I still got heartburn, diarrhea and the metal taste. Now, with just the two targeted drugs, I don’t get any supplemental drugs. There aren’t any real side effects, except for the occasional upset stomach. I spend the hour chatting with Christy, updating my clients’ work and thinking about what else is heading my direction. During the chemo rounds, I had someone with me for infusion, but without all those front loaded drugs (like benedryl) I can drive myself home, so now I’m mostly by myself for infusion. My sister spoiled me last time, but that was a special treat.
Infusion is uneventful. The bracelet they gave me at check in is the key to releasing the drugs. Two nurses check my name and birthday against the bags of chemicals to make sure they are intended for me. The machines I am hooked up to beep towards the depletion of the bag. I sit in a large open room with six stations for patients and a central nurses station. The area is called a pod; I always go to the same place and always have the same nurses. Each recliner has its own TV, guest chairs and big green curtains to divide my area from the patient next to me. I like the curtains open, personally. I like to see what’s going on. The view of the city is one of the best there is. Rush is only slightly south of the Loop and a few blocks west. I see Willis Tower through the hazy morning light.
Just out curiosity, since I’m normally not at Rush on a Wednesday, I text my primary surgeon to see if she’s in. I typically have infusion on Thursdays, but that didn’t work with the gynecological oncologist, so I’m here today. I haven’t seen her since all the hoopla with radiation, and losing my implant. She responds instantly, and I turn around in the parking garage to go check in with her. She takes a Q-tip stick and puts into the opening in my stitches to feel around and see how big the cavity is. Pretty big, she thinks. Perhaps packing it with gauze would help aid the healing process. She suggests I talk to plastics about that. She snips off a couple of useless stitches, and sends me home with a package of gauze, two dozen Q-tip wands and a big hug. I’m lucky that my entire medical team of now five doctors is responsive to text messages. So much of my treatment has been based on our ability to communicate quickly even with photos sometimes when I question my experiences.
On my way back to Western Springs, I have to see the plastics team to have the rest of the stitches checked. It’s been a week since they saw me last, and after my drive by at the primary surgeon’s office, perhaps we’ll change the course of action. I still have six or eight stitches left from the removal of my expander, but I doubt they will take them out. As a matter of fact, I wouldn’t be surprised if they add some. The office is only minutes from my house. I suspect I’ll be seeing them once a week for the foreseeable future. The primary surgeon thought this hole would take three months to heal. Lord help me.
Round trip I’ll have been gone a little over seven hours today; I’ll make it back in time to get the kids from school and still sneak in a little work. Because my work is portable, clients and colleagues often don’t know where I am, and that has worked out perfectly for the “addition” of cancer to my daily schedule. My next infusion is in 3 weeks, and it will include all necessary pretests for the ovary surgery and an echo cardiogram to check my heart values for damage from chemo drugs. Looking forward to seeing the dog when I get home. She’s always so excited to have me back, especially since it’s now storming. She definitely doesn’t like that.
Contributed by Jeni Moore
Married to Bill for 20 years.
Mother of 3: Madison, Lilja and Ray Ray.
Designer by day, potter by night.
Recently added: Breast cancer warrior.