The husband and me at my nephew’s June wedding in St. Louis in 2021.
I had a “simulation,” today for radiation that REALLY starts tomorrow—one of two. First simulation involved the much-hated and feared “tube.” The second one (today) was simply to familiarize me with the whirring machines that will be delivering beams of radiation to my attractively decorated right side (which is festively marked up with magic marker at key points to guide the beam’s rays and decals.)
You lie on a narrow table, gazing at the ceiling, which has fake stars twinkling through a black background. A large round metal part of the machine is directly above you.
One can hear Prince singing “Let’s Party Like It’s 1999” in the background, followed by Huey Lewis and the News (“It’s Hip to Be Square”). (Makes you hope the machines are not as old as the music.)
I am warned that the machines that will come whizzing by my head may seem like they are going to hit me in the face, but—not to worry—that won’t happen. (I close my eyes after that warning.) The attendants leave the room, because, well, it’s radiation.
Noises besides music include a sound that resembles a vacuum cleaner, but it’s not the loud pots-and-pan clanking of an MRI machine. The sounds of medical machines doing their thing. They “do their thing” for 15 minutes, after which I am free to go, to start “for real” tomorrow (5/12/2022) with creams and side effects and God Knows What Else.
After hearing the words of wisdom of the Iowa City physician (Dr. Vikas) on Friday, May 6th, I decided that I would like to speak, again, with Dr. Goswami, the President of all radiologists in the Quad Cities, who was on duty at the Genesis Hospital in Davenport (East Rusholme Street; formerly known as St. Luke’s) back in December when this all started. St. Luke’s is now either Genesis East or Genesis West. (Even some who work there seem confused as to whether it is East or West.)
If Dr. Hartmann had not taken off and disappeared without a word to the anxious, not to return to his office until January 25, I might have had all this done at Genesis. But, since nobody would tell me if Dr. Hartmann had Covid or was simply on vacation, and I was eager to “get this show on the road,” I ended up with a much-closer hospital (10 minutes away): Trinity and Unity Point and Dr. McKenzie, whom I had actually met once before in 2018.)
Why did I drive all the way to Davenport for a repeat mammogram?Primarily because they were the only facility that would do a mammogram in the afternoon.
I really liked Dr. Goswami, whose positive words of encouragement (“You did everything right. You’re going to be fine.”) have kept me going for 6 months. You could tell that she was good at her job.
She is a graduate of my alma mater (U. of Iowa), board certified, and did her residency in Wisconsin. She did not pussy-foot around but told me immediately (on Pearl Harbor Day, 2021) that this was going to be bad, even before the lab results came back on Saturday, December 10th. She also pointed out that the small size of the tumor was in my favor and would mean that chemo would not be necessary to shrink the size of the tumor before its removal; nor would chemo probably be indicated afterwards.
In other words, she did not sugarcoat the truth, but prepared me for what has come since. This was in direct contrast to the technician who performed the echocardiogram, who was very close-to-the-vest and mysterious about the outcome of that test to verify that my heart was good enough for surgery. He insisted that only a physician could read the chart and tell me. So, how long did it take a physician (no doubt a heart expert) to read the chart and contact me? FORTY-ONE DAYS. Yup. I did not find out that my heart was “sound” for 6 weeks.
That’s right, one day shy of 6 weeks from when I had the echocardiogram on 11/29/2021 until someone could be bothered to let me know that I had NOT “had a silent heart attack” and was, instead, doing fine, with “the heart of a 30-year-old.” (My response: “I’ll bet he wants it back.”) And, yes, I called 3 times a day, trying to find out.
Plus, I was not told the exact location of the tumor until 10 minutes before being wheeled into surgery, when they were inserting a three-foot long wire into my side to “guide the surgeon.” I had asked. And asked. And asked. Each physician would pass the buck to the next, saying, “You need to ask the surgeon about that.” Or, “You need to ask the radiologist about that.”
When we showed up for an 11 a.m. pre-operative consult with the surgeon (my husband with me) we DID “ask the surgeon about that,” he did not join us until 15 minutes to 2 p.m. We sat in a small, frigid examining room waiting for 2 hours. (Fortunately, we had reading material, but I was so cold in the lightweight cotton hospital gown that I ended up putting my coat back on.)
I asked that the surgeons put the mammogram slide that showed the location of the new tumor up on his computer screen, for my husband and me to see. The doctor only had an old biopsy from 2018, which he did put up on the screen. I spent the entire time leading up to surgery (12/6 to 1/27) trying in vain to find out if the “new” tumor was anywhere near the “old” tumor, because the stereotactic biopsy location of the ”old” biopsy site was in a very bad place. It was inconveniently located and took what seemed like forever—at least 2 months— to heal up. The attendant that day (Jane)—who had not warned me that I might be subjected to a biopsy—denied me a second half-moon sized ice pack, when I requested one, and told me, “You can make one yourself.” She also insisted—despite the negative report from Dr. Croemer and the lab that the biopsy was normal—that I would have to meet with an oncologist or my insurance would not pay for the biopsy. (I sowed up with a 3-page letter about the entire procedure.)
Post simulation, I drove over to what used to be called Illini Hospital and went into their Cancer Center in search of Dr. Goswami, because, online, it said that she worked out of Illini. The two receptionists at the desk of the Cancer Center had never heard of her. One said I should go down the hall to the radiology department and offered to lead me there. We walked there together, and commiserated about how, in today’s medical world, insurance companies seem to try, increasingly, to find ways to dis-allow treatment for deserving patients. One day, said my companion, it will come down to only the wealthy can get care. I did not disagree. I added, “Right. And there will be an age cut-off.” Which there actually has been for some time. (I remember when a good friend’s Mom could not get a stem cell transplant because she was over 50; now it is 70.)
I’ve been told to apply udder cream to the radiated area three times a day, but not within 4 hours of a radiation appointment. I’ve been told to check the first 5 ingredients on the Aloe I ordered from Amazon to make sure that alcohol—which is drying—is not among those first five ingredients. I’ve been told to report at 12:45 tomorrow and the rest of this week, with appointments from then on scheduled for 1:30 p.m.
Today’s radiation was a non-event (which is a good thing)…so far.