We are in Chicago and journeyed to Wrigley Field to watch the Cubs battle the St. Louis Cardinals today (July 21, 2023).
We took an Uber to the game ($40), which was probably in deference to the elder members of the group. (That would definitely be me and my spouse.) When we were going to return, the price was $60 so we took the ell, which turned out to be a free trip when the machine wouldn’t take my son’s credit card. The subway guru told all six of us to go on through.
The party included son Scott and wife Jessica and my twin granddaughters, Ava and Elise, age 14. Among other things, we’re celebrating my birthday on 7/23.
We were originally slated to have a seventh participant, but issues such as removal of a skin cancer and the delivery of plants derailed that idea.
Because we shopped for merchandise on the way into the park the bleachers were filling, but we successfully found a spot in the left field bleachers.
Mind you: I am not a big baseball fan.
When I returned from 3 months in Europe (People-to-People exchange student in 1967) my now husband—who had missed me, [as I had missed him], thought the first thing I would want to do upon my arrival in Chicago would be to attend a double header Cubs baseball game.
It was one of the longest days of my life.
The interesting thing, to me, was that everyone around me was speaking English. I had not experienced that in three months. I told my son not to get me a ticket for today’s game, but my daughter couldn’t join us; I hated to have him waste $80 x 2 for two unused tickets. We all suggested that he sell them, but they were on his phone, which seemed to be a hurdle. (How do you pass off a ticket that is on your phone to another person’s phone? Don’t ask me. I don’t know how to get them onto my phone in the first place.)
The weather was perfect—breezy, warm but not hot, just perfect. Plus, all of us had dressed for the occasion. The Cubs hit two home runs and took an early lead (4 to 1), but nearly blew it in the 8th and 9th innings. (And, yes, I made it through the entire 9 innings, and I want that on my record.)
The problem, for me, was that bleachers don’t have a “back” to lean against. I never had back problems until I took Anastrozole for 7 months, post cancer surgery. Or, at least, I didn’t know I had arthritis in my spine or whatever ailment it was that caused truly horrible back aches (and insomnia). The Anastrozole did a real number on my left knee and—out of the blue—my back would hurt so badly (right where you bend at the waist) that I searched through my left-over Oxycontin (root canal left-over) looking for some sort of pain reliever that worked. Unfortunately, you can’t take Oxycontin with a benzodiazepan, so no dice. Nothing ever did work. The other side effects included mood swings, dry skin, teariness, vision problems and vivid violent nightmares. So THAT was fun—(not).
Nothing helped. Ultimately, I had to discontinue taking Anastrozole or any other aromatase inhibitor. My left knee (injured in a biking accident in 1997 and in an Iowa City MOST knee study for 25 years) blew out on 9/15/2022. When I reported that to my Moline oncologist that the combination of old age and a previous knee injury, coupled with Anastrozole, had caused my left knee to quit working while I was simply walking along a Chicago street (“Cancer: the gift that keeps on taking.”) my Moline oncologist denied that there could be any connection between my back pain and/or my knee blowing out and said, in writing through the patient portal, “The only side effect from taking Anastrozole is a little stiffness in your hands, and it goes away when you quit taking it.” And if you believe that, I have a bridge for sale.
All my communication with the oncologist between February 8th and August 8th were through the patient portal and what I have come to call his “minions.” He never saw me himself in that 6 months, which has always seemed derelict. Yes, I was scheduled for appointments, but he was never there. The minions—at least 3 different ones—were interchangeably assigned.
I’m not sure the oncologist would have seen me on August 8th if my surgeon had not called him up and said, “You need to see this patient.” . It is probably a good idea to see your cancer-stricken patient personally more than once every half year. And perhaps it would have been a good idea to have ordered an oncotype for me from the very beginning, since that determines the patient’s treatment path but also will provide some peace-of-mind regarding the possibility of a recurrence in the future. Why wasn’t it ordered? A different doctor in the system suggested, “He doesn’t like to be dinged by Medicare.” Which, if you are the patient, is not very reassuring.
My surgeon on August 7th suggested a Ki67 test, which would have determined the aggressiveness of the tumor and might perhaps given me some peace of mind. I asked the oncologist about it repeatedly through the patient portal. No dice.
And the oncotype, which my Texas oncologist said would have meant three bouts of chemotherapy for me had I been his patient, took 17 months to secure. The “minions” (all female… nurses, Physicians’ Assistants, etc.) were the only individuals who ever met with me from February 8th until August 8th and nobody seemed willing to order either an oncotype (considered Standard of Care since 2013) or a Ki-67. In fact, my Illinois oncologist—who had dodged me successfully for half a year—[while I had been asking about the Ki-67 test recommended by my surgeon for, literally, months through the patient portal]— said, “I won’t order that for you; you’ll have to get somebody else.”
So, I did. And I’d recommend to other future Unity Point (Moline, Illinois) patients that they remember that today’s mantra for medical care seems to be YOYO (“You’re On Your Own”). I certainly felt that way as I asked, time and time again, about ordering a Ki-67 and, time and time again, I was told by the minions, “That is a question you should take up with the doctor at your next appointment.”
Except that it didn’t seem very likely that I’d ever see the oncologist, in person, again.
And the minions did not listen well to anything you might share with them, such as the fact that I would not be in the Midwest for the April 6th appointment they claimed I had made (when they called me in Texas to “remind” me of the non-appointment.) What about “I won’t be back in the Midwest until at least May is difficult to understand? And why did it take until May to do a bone scan, when I began taking Anastrozole in February? And why did Medicare deny the claim for that bone scan for literally months, when I had not had one since 2019? Someone should have taken a look at my weakening bones (osteopaenia verging on osteoporosis) before my previously injured left knee quit on September 15, 2023.
There is an entire study of medicine (AIMSS, since the sixties) devoted to aromatase inhibitor drugs and their effect on bones and muscles (especially if the joint has been damaged previously.) My oncologist—-finally learning of all of my side effects over half a year in— said, “Don’t take it then.” Then he walked out, leaving me to try to figure out what the next logical step should be for prevention of a recurrence of breast cancer (the purpose of Anastrozole.)
Since I was never ordered an oncotype when I began bringing it up (Dec.. 2021), and an oncotype is normally a guide to treatment as well as a guide to the probability of a recurrence, I had no idea how likely I was to have to go through another surgery. I likened my feelings of being totally and completely at sea to a small child standing at the edge of a frozen lake, wondering if the ice is thick enough to hold. An oncotype of my tumor might have yielded that kind of information, but I was simply told, “You don’t need one” and I tried very hard to be a good compliant patient for a very long (too long) time.
Was my tumor that small and insignificant? It was 11 mm. Why did I “not need one” when I only found one other woman (out of 60,000 on WebMD), who didn’t get one? Beats the heck out of me, but I will say that it took until March of 2023 (from my initial query at the very first appointment in December of 2021) to finally get an oncotype from a different doctor in a different state, who was not overly impressed with what I wrote down and presented to both the Texas doctor and the Iowa City doctor. (The Iowa City oncologist said, “Why do you think most of the Quad City patients come here?” Why, indeed.)
I asked for referrals to “good Quad City oncologists who listen to you” in Iowa City —citing remarks made to me (and others) like, “Last time I saw you, if you had had a gun, I think you would have shot me” and “After talking to you three girls (former employees of mine whose mother was a patient), I need therapy.” If those strike you as unprofessional remarks, no kidding.
To hear how Diana (my employees’ mother) begged her oncologist (also my oncologist) to run a test to see if her cancer had spread and to hear how he would not do it was upsetting. Her breast cancer, which had recurred after many years, spread to her pancreas and killed her. But when her daughters attempted to take her to the Mayo Clinic her oncologist said, “I interned there. I know everything they know.” O……K……
After 17 months, a Texas oncologist finally secured the oncotype I inquired about in December of 2021, which my Moline oncologist simply dismissed, saying, “You don’t need one.” Not only that, the Texas oncologist spent 2 hours of his time meeting with me, after hours, when everyone had gone home. (He was working late after hours because there had been an ice storm and all of his week’s appointments had to be canceled and then re-scheduled.)
The Texas doctor vowed to get me the test I asked about, which normally would have been done in January of 2022 after the 1/27/2022 surgery. It showed that my % of recurrence, according to the oncotype, would be 18% if I took Tamoxifen and 36% if I did not take this drug . The score of 29 was not a good one; 25 was the cut-off for chemotherapy/ I flunked an ultra sound test on 1/25/2023 at my one-year anniversary, and had to have a diagnostic mammogram on Valentine’s Day, during which I learned for the very first time that there was calcification on the left side as well as the (bad) right side. I had never been told that previously about the left breast and the thought that flashed through my mind was that it had taken 3 years for the calcification on the right to become a tumor and I’m coming up on 3 years of calcification on the left soon.
I suffered through a stereotactic biopsy in 2018 at Trinity (with no warning that needles were the order of the day, but a letter reaching me 3 days after the 2018 test telling me that I should “consult with your physician about your next step.”) A bit late for that. I cannot recall ever being given a “heads up” about the left-side calcification until the 2/14/2023 diagnostic mammogram.
Therefore, I have agreed with my Texas oncologist that taking one of the drugs that are considered adjuvant therapy (mentioned below) is in my best interests. However, the prevailing opinion is that I am one of the women who absolutely cannot tolerate aromatase inhibitors. (Clinical trials are underway in St. Louis at Washington University to determine who can benefit from them and who might become suicidal if taking them, which has happened.)
I am between the proverbial rock and a hard place. Iowa City seems to think that, “If it recurs, you just come back and we do it all over again.” (actual quote). My Texas oncologist said, “I’m not worried about it coming back on the contralateral side. I’m worried about it going some place else.”
My Moline oncologist never suggested taking any other medication after my 7 months on Anastrozole. He got up and left the room when I tried to share the symptoms I had experienced, saying, “Don’t take it then.” I thought we would discuss alternatives, but that didn’t happen.
I had to be wheeled in a wheelchair to my first post-surgical mammogram on October 3rd, because of my knee blowing out in Chicago on September 15th. I spent 6 months hobbling with a cane or using a wheelchair before my knee recovered from the inflammation caused by Anastrozole. Injections at a knee joint pain clinic in Oak Park (32 ml of an anti-inflammatory; 6 ml of Durolane) helped (on 9/21/2022), and four sets of orthopaedic surgeons in 3 states have weighed in. Tramadol (50 mg) was prescribed for pain. The precise cause has never been pinned down because I didn’t have an MRI. I would put hard cold cash that the Anastrozole was one of the reasons my knee gave up the ghost. My Moline oncologist—who is on record as saying the ONLY side effect is “a little stiffness in your hands”—would disagree. If he physically showed up in front of the 60,000 WebMD women, they would probably stone him.
My Texas oncologist said that, had I been his patient at the outset, I would have had three bouts of chemotherapy. That ship has sailed. It had been nine months of cold turkey no drugs at all before I flunked the ultra sound and was told “get thee to an oncologist ASAP.” I wrote all of this down in detail and gave a copy to both of my current doctors. I heard the Texas doctor discussing it with a female breast specialist in the hall. They were appalled. (They didn’t know I could overhear their remarks because the door was ajar.)
Now I am taking a different drug (Tamoxifen). It’s been around since the sixties and can give you blood clots that cause heart attacks and strokes and endometrial cancer. Not fun prospects. And yet the other survivors on WebMD describe many, many horrible side effects for every single one of the drugs (either blockers or drugs designed to stomp out estrogen in your body) we are told to take. It is difficult to understand why this wealth of 60,000 survivors is not being more fully utilized to let doctors who seem to be in denial into the information loop about what really happens to many female survivors on these drugs.
I’m not sure if Tamoxifen is implicated in the back pain at the ball game, or if it is simply old age and arthritis, but the over two hour baseball game, (which I went to in order to use my daughter’s ticket), will probably be the last time I sit on bleachers at a Cubs game. I am so happy that my son and family came to Chicago to cheer me on on my birthday. I’m so I’m glad it was a Cubs win. I’m happy I made it through the day and I hope I was a good sport. (I tried).
Meanwhile, if you are a cancer patient in the Quad Cities, take note:: YOYO.
We went out on the Mississippi River on the Celebration Belle Riverboat tonight, with old friends (and my husband’s classmates) Bob and Judy DeJonghe and Bob and Marvis Hafner.
I spent a day or so wondering what to wear. Remembering the bad weather that I encountered with my parents decades ago and the fact that the A/C inside can get cool, I settled on a new outfit from the Four Seasons that had a matching light blue sweater. The store, my favorite, had sent me a coupon for my 7/23 birthday to purchase one item at half price, and, when I drove over to select it, learned that they were having a truly great sale of summer items. Since we spend the winter in Texas, summer weight is year-round weight. When I learned that if you bought 2 items that had been marked down twice, you got an additional 40% off the sale saved me $182.33 on my final bill. I’m all set for celebrating this weekend in Chicago with the family gathering from Texas, hitting a Cubs game, a play at the Goodman Theater, and the Signature Room atop the Hancock Building. Can’t wait!
A discussion broke out concerning “our song.” Judy said that “A Summer Place” was their song. I managed to tear a piece of paper off an envelope, write a phonetic pronunciation of “DeYoung”, and give the D.J. a request that he play the song and announce the 57th wedding anniversary of our host couple, Bob and Judy DeJonghe. I have always remembered their anniversary, because it occurred on my birthday, although I did not know Bob and Judy at the time. (My spouse was in the wedding party, as was the other male member of this unholy trio, Bob Hafner).
Still, it was a lovely idea to have this “celebration’ and I’d like to thank Bob (DeJonghe) for his efforts in thinking this up and getting all of us, including the just-out-of-the-hospital Bob Hafner, onboard.
.
The last 3 games against the Wisconsin team Elise’s team won, which was nice.
The weather here has been very smoky due to the wild fires burning in Canada. There is rain predicted for tomorrow and that may carry the smoke out of the area. Everything is gearing up for the NASCAR race that will put cars on Columbus and Lake Shore Drive and Roosevelt and other Chicago city streets for a race that will see the cars traveling 120 mph through the streets of the city. Much of this race goes on near me, so, as you can imagine, getting around during this preparation is chaotic.
It’s been a semi-busy Friday/Saturday weekend. We had no plans at all until Wednesday or Thursday, when, for the first time in the 30+ years of the Quad City Senior Olympics, I read about it BEFORE it was over. Usually, I have read about the events (usually at Augustana) and thought, “Oh. Wish I had known about that before it was all over.”
So, it was surprising that my husband was announced as the third place finisher, but—hey—it’s all in the family and, this way, we ould each have a medal (a silver and bronze.) It was a kick. Thanks to the organizers, who also provided some soft drinks and bags of chips to the contestants.
Today’s random rant will be about the polar vortex and how it ravaged my kitchen in my absence (Texas).
It appears that a new sub floor is going to need to be put in. The people who removed some of the cabinetry want us to buy all new cabinets, even though the cabinets that currently are in place do not appear to have been harmed much or at all and the bottom parts would never match the top parts (and the Wood Mode cabinets were exorbitantly expensive when put in in 1993). One laborer, who had said he would intercede with the insurance company on our behalf, seemed quite put out that we don’t want to invest huge sums of money in all new cabinetry when the current cabinets appear to be largely okay. One went so far as to say, “They could collapse,” which seems highly improbable. There is talk of signing some sort of waiver that would protect from something like the recent collapse of the Davenport on Main building in Davenport, Iowa.
on a plastic door to enter the kitchen. (We chose to go outside the house and enter through the deck door). The fans were noisy (difficult to hear TV over them) and a heater was employed for a while, which drove the temperature in the room up to 87 degrees. The fans were loud. My spouse told the workmen that I would not have had to run my “wind machine” at night, because the fans were that loud. That would be funny, but not if you’re living in the middle of it 24/7.