Treatment Day
9:30 a.m. to 3:30 p.m., February 18 (for all our fellow fans of 24)
Have you ever felt before a dental appointment that you should go but you really don't want to? For example, you need cavities filled on both sides of your mouth, top and bottom. Imagine instead of that appointment taking an hour and a half, it takes six hours. And instead of once in several years you have to repeat the appointment seventeen times a year, as long as the treatment is working. That's partly what my cancer treatment is like.
My last treatment was a series of small indignities and extended, unexplained delays similar to a really long, terrible day of air travel. So last night I worried from 12:30 a.m. to 3:30 a.m. about my appointment today. I worried about cancer. I worried about what treatment will be like when this treatment ends. I worried about the headache I had from worrying. I worried about things I don't even remember. When Ivan got up in the middle of the session I asked him to bring my headache pills. He did and then rubbed my shoulders. That feels so good in the middle of the night! He went back to sleep and I eventually did. I knew I had to go today and I am grateful for this treatment but I didn't look forward to it.
When I got up this morning I saw the mail delivered in Kansas City before our arrival from Spirit Lake last night. The first thing I opened was from my friend Liz. It was a card that was so understanding and encouraging I cried. It was exactly what I needed to hear. Then I opened my e-mail. Kylia forwarded the designs Cecilia created for the Sassterhood and they were AMAZING! With the clarity of daytime thought I remembered that with Ivan, Liz, Cecilia, Kylia and all of you behind me the appointments would be OK.
Ivan and I confidently set forth at 9:30. At 9:45 we checked into the waiting room on time for my lab appointment. I noted this because I intended to cheerfully murder anyone who put us through the waiting we endured last time. Trust me, a jury of cancer patient peers would acquit. I was the youngest person in the room, again. One talked on her cellphone. People, don't do that. I'm just saying. There was a water cooler in the waiting room. Nice touch! There was a disorganized stack of newspapers, but no magazines. Not so nice. These things add up over six hours, seventeen times a year.
Hooray! Five to ten minutes into the New Yorker magazine I brought, Shari called my name. She verified my name and birthdate, which I appreciate. Another Janet Brown is on the same appointment schedule and this would be a bad place for mistaken identity! Shari put a glamorous hospital ID bracelet on me so I think we're going steady now. That's OK because I like her. She's really nice, answers questions well, has a good sense of humor and is very good at her job. She unwrapped a bazillion sterile packages of gear to use in the blood draws from my
port.
The port is implanted in the subclavian artery to my heart, so Shari also wore a face mask for prevention of infection. The needle stick into the skin covering my port was fine. There was a problem at first with it not drawing blood. She fixed it right away with one of her tricks, explained what happened and reassured me in case it happens in the future. During a series of injections and draws from my port I thought, as always, "This is SO much more comfortable than using that tiny, overworked, hard-to-find vein in my right elbow."
Five tubes of blood and ten minutes later an IV line from my port dangled from my neckline and we said goodbye to Shari. We proceeded to check-in at the next appointment, 52 minutes early. The receptionist there greeted me with a health insurance problem, but she accepted my assurance that it would be resolved. I asked if Ivan and I could leave the building! (gasp) and she encouraged us to go. We walked across the street to Rainy Day Books and found several great little presents for Baby Garver. It was a fun break in the Real World!
We got back in time for a snack at the cafe. Props to the medical center for the healthful food choices and fresh flowers on the tables! Again, nice touches for Frequent Flyer patients spending the day there.
After a restroom break we headed for the 11:00 exam with Dr. Khan, my oncologist. We were early, which was good because the lab called and needed to do some additional things. Shari thoughtfully came to me, drew two more tubes of blood and presented me with one of those cute little cups to fill. Hmm. I tried; but it wasn't going to happen immediately after the aforementioned rest stop. I really wasn't bothered by the communication mix-up in the lab but Shari was so apologetic and took responsibility for the mistake several times, even though it wasn't really her fault. Note to staff, that is really important to patients. Thank you, Shari!
Dr. Khan's waiting room has nineteen comfy upholstered chairs, fresh flowers and one magazine. We advanced at 11:00 to an 'intermediate' waiting room. My blood pressure and weight were recorded. This time my weight wasn't announced to everyone within a quarter mile radius and Theresa, the nurse, gently scolded Ivan for peeking at the scale. "We girls have to stick together!" she said. I confirmed a list of my medications and filled out a fascinating little chart of My Distress Level. This is a really good tool and I appreciate that it's part of the treatment routine. A very kind social worker follows up with counseling and support for distressed patients. I felt like I aced a test when I had no symptoms or distress to report.
At 11:20 we moved to the exam room. I was issued an elegant pink cotton number to wear which snaps in back. Theresa brought the greatest advancement in medical care this century, in my opinion, a warmed blanket. I decided to go steady with Theresa too, if she asks. This room has two straight chairs, an exam table with a pillow, one work of art on the wall and magazines on the back of the door. Can you determine the trifecta absent last time? The room is smaller than an office cubicle, which explains the lack of a privacy curtain or a place to put the underwear I just removed. It compares favorably to the room Kylia and I shared three weeks ago, though, which held an Entertainment Potential scientifically measured at -39. She will confirm that was a generous score. We have developed Plans in case we get that room again. I can't reveal much, but they include the flashlight instrument installed on the wall to look in patients' ears, the paper 'sheet' pulled across the exam table, matches and the wastebasket. Stay tuned for updates.
Rebecca Clark-Snow, the RN, BSN, OCN research nurse manager for clinical trials arrived. We asked our current questions and she quizzed me about symptoms and side effects. Rebecca complimented me on having "nice, bony ankles," meaning they aren't swollen. Dr. Khan joined us and we repeated some of the discussion in more detail, including whether to increase my high blood pressure medication. Having high blood pressure for the first time ever indicates fairly certainly that I am receiving Avastin, the study drug, instead of the placebo in the clinical trial. So having high blood pressure is a good problem to have! Rebecca reluctantly agreed to be photographed when Dr. Khan said they were the Study Team. Our family has a lot of confidence in Rebecca, Dr. Khan, Jennifer and Stephanie, the nurses who work with them, and all the staff at the medical center. We agree, team spirit is key, Dr. Khan!

At 11:47 we saw Susan to schedule the bone and CT scans on March 10 (that will be a more difficult day) and treatment appointments for March 12, then headed upstairs to the treatment waiting room. At 12:15 we entered one of the 39 private rooms there, each similar to part of a hotel room. There's a TV, DVD player, sink, recliner, straight chair, lamp and IV pump on a rolling stand. This one had a window view to the outdoors. I was presented with that plastic specimen cup again! and then another warm blanket. It felt even better than the one in the morning. Ivan went to the cafe to get our lunches. At 1:05 the treatment nurse gave us a copy of 36 lab test results from the morning. The pharmacy only mixes the treatment meds after those results come back in acceptable ranges. My first treatment began at 1:15. When the IV bag is nearly empty the pump beeps until a nurse comes to turn it off. I noticed another pump across the room beeping a few beats after mine, an electronic call and response hymn from the cancer choir.

Four and a half hours after we left home the second IV began. By this time I finished reading research articles about tinnitus, African merchants in Guangzhou, the fact checking process for the New Yorker, the real estate market in Florida and three tributes to John Updike. I was tired of reading; tired in general, really.
We were happy to see the woman who brings the beverage and snack cart. Ivan and Kylia compete to see which of them can score one of her sack lunches. So far it's Kylia 2, Ivan 0. I've heard this volunteer decline to provide a double martini to another patient, but we all appreciate the drinks and her friendliness. At 3:00 the IV was over, my port was flushed with Heparin and we were turned loose. At 3:30, Ivan and I both grateful to be home, I took Advil for my port site that had been aching since the morning lab tests and took an hour nap.
I apologize for the exhaustive description, but it still took less time for you to read it once than it takes for us to experience it. I hope it's clear that so far none of it is that bad on its own. It's just that the cumulative effects are wearing. Maybe this will help someone understand why we sometimes complain and sometimes celebrate, and why your ongoing support means so much.
The nicest thing about Treatment Day is when it's over we have the longest possible interval of Real Life again until the next Treatment Day. Nicolai arrived from Ames to spend a couple days with us. Kylia made us dinner and Matt brought me flowers from Baby Garver. We had a great family night together. Thank you! I love you, I love you, I love you.
--Center Sasster