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Tag Archives: fibroid

The truly final journey of Ignatius the tenacious uterine fibroid

words and images Posted on August 12, 2009 by dlschirfJanuary 5, 2023

(Beware gruesome fibroid image downstream.)

After an August 2008 uterine fibroid embolization, or UFE, failed to relieve me of Ignatius the tenacious fibroid’s symptoms — bulkiness, frequent urination, and possibly the lower back and leg pain that sometimes made walking even easy distances painful and tiring — I scheduled a laparoscopic myomectomy for July 27, 2009. In this outpatient procedure, a laparoscope is inserted through the navel, and the fibroid is sliced, diced, and extracted through several small incisions compared to a single large one. The surgery takes longer, but the recovery period is shorter.

Beforehand, I felt the same way I’d felt about the UFE — I was going to start the day relatively healthy and was choosing to end it, and to spend many days after it, in pain and discomfort. I didn’t hesitate, but it struck me a year ago and again now what an odd choice it seemed, especially because I had become so accustomed to the symptoms that they seemed normal and endurable. I knew, though, that I never felt very good anymore. Sometimes I wondered, too, if the growing sharpness of temper that I’d been experiencing weren’t attributable in part to the fibroid’s effect.

In short — no pain, no gain.

For a laparoscopic myomectomy, you must undergo something I’d never done — a bowel cleanse. On the remarkably cool and pleasant Sunday before the surgery, I spent my time swallowing a noxious liquid while hovering within 10 to 15 feet of the toilet. By 9 o’clock, I was sure that the pain I was in then was sure to be the worst of the whole affair.

Of course, it was just the beginning.

On Monday morning, I threw enough into a tote bag to keep me entertained in the waiting room — pen and pencil cases, journal, paper, The Bride of Lammermoor — plus the usual travel practicalities, like tissues and an umbrella. I also took my new iPhone GS, but not the adapter — I wouldn’t need that during surgery or the brief period of in-hospital recovery.

It’s too bad my brain didn’t regurgitate the slogan from the old commercial at just that moment: “Don’t leave home without it.”

I arrived almost exactly on time, at 8 a.m., and sat in the waiting room only a few minutes before I was called; there was very little time in which to become anxious, let alone break out The Bride of Lammermoor. I was escorted to a bed, where an experienced nurse introduced herself and began her ministrations, including the dreaded catheter.

I had been afraid of that.

Dr. M.’s resident came in and introduced herself. The anesthesiologist and his resident came in separately and introduced themselves. Even further down the food chain, a medical student introduced himself. I was the center of a lot of attention, which I’m not used to.

The anesthesiologist, who seemed distracted, noted my high TSH and low level of Vitamin D, although he confessed he didn’t keep up with the recommended ranges. “Really?” said the nurse. “It’s all the rage now — thought to be behind a lot of health issues.” “Like diabetes,” I contributed. “Like diabetes,” she agreed. The anesthesiologist appeared to be deferential on this point. “I follow it because it’s in the news so much,” the nurse explained.

The anesthesiologist left his resident behind to do the IV honors. She offered them to the nurse, who said it was up to the resident. “This isn’t the first time I’ve done this,” the resident said brightly. “And it’s not the second time, either.” If it was the the third time, it was not the charm, for after carefully and laboriously tapping a vein, she couldn’t get blood to come back even as the nurse was telling me, “I can do it because I’m old.” Later, the anesthesiologist tried a different vein, which he pumped up and which mysteriously disappeared as he tried to draw blood back. “It was there, but now it’s gone.”

I’m used to having deep, small, uncooperative veins, so none of this surprised me. I don’t recall who finally drew first blood or when.

My surgery was to begin at 9:30 a.m., but there was a slight delay. I went through the double doors at around 9:45 a.m., then promptly conked out, no counting needed. I’m not even sure how.

When I came to, I had the very odd but very clear sensation that it was late in the day. I did the mental math — two to three hours for surgery, say another two hours for recovery — and couldn’t reconcile my memory and calculations with my sense that the afternoon was far advanced. I turned to look at the wall clock, which, if I squinted, I thought I could read without glasses. Big hand on the 5, little hand on the 6. 5:30 p.m.

That couldn’t be right.

I looked again. Same result.

Uh-oh.

As people bustled about me and asked me how I was doing, I wondered if the extended time frame meant missing body parts.

Then I lay in Room 1462, overlooking Lake Michigan, I wasn’t in much pain, and if it hit me I had a button to push every 15 minutes as needed. I had time if not clarity of thought to wonder what kind of interesting circumstances or complications may have arisen.

Later that evening, Dr. M. came in to tell me the story. I don’t fully understand it, so I wouldn’t want to be quoted on chronology or cause and effect. The short version is that issues with CO2 absorption, combined with the fibroid’s calcification, led to the decision to switch from an outpatient laparoscopic myomectomy to a mini-laparotomy to ensure the entire fibroid was removed. Ignatius, which was described using the precise medical term “ginormous” and which was demonstrated with a show of surgical hands, proved to be “hard as a rock,” having calcified after the UFE.

“So that’s the good part,” he said encouragingly.

“Yes,” I said, having a distinct feeling there was more.

There was.

For the first time in his experience, or any experience he knew of (including, as he later mentioned, that of his father, who had been a gynecologist for 40 years), an instrument (a tenaculum) had broken, and a small piece, one-fifth of inch in size, was now embedded somewhere in my tissues.

Ah. My very own piece of shrapnel.

While I was coming to, or shortly after, I think, x rays had been taken to track down the tenaculum tip. Dr. M. explained that the problem with x rays is that they don’t show where such an object is in three dimensions. In my anesthetized stupor, I suggested an MRI because I knew it would produce a 3D image. Dr. M. seemed to think this a brilliant idea, although later I marveled that I would even mention undergoing an MRI, which I, like most, don’t enjoy. He consulted with Dr. V., the interventional radiologist, who being more expert than I about medical imaging, in turn suggested a more efficient CT scan.

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In the meantime, J. came in bearing gifts — flowers, candle, hand soap, “Get Well” balloon, and his Flat Eric to keep me company. After all that anesthesia, I could not keep my eyes open for more than a few moments, so I’m sure I was dull company. When I slept, it was as though dead. The frequent interruptions by the staff — to take my vital signs, to change IV bags, to look at my abdomen, to ask me about bowel movements, etc. — barely broke my sleep.

I found that early mornings began with a visit from Dr. M.’s resident with subsequent visits by other residents — never the same one or two twice — and the medical student I’d met Monday morning. While the residents asked questions, checked my abdomen, and performed other medical ablutions, the medical student seemed limited to asking questions and learning bedside manners. Before leaving, he would reach for and squeeze my ankle through the covers in a way that, in an experienced physician, would be reassuring but in this case was mostly awkward. As each morning’s residents came in, often waking me up from a sound sleep, I did appreciate being part of their educational experience in some infinitesimal way, and wondered if they’d seen my surgery or how much they knew of my case.

It was Tuesday, I think, that Patient Escort Services came to take me for a CT scan. From one day to the next, I had become as weak as an infant. I was sore, but it’s not that it hurt me to sit up or to transfer from the bed to the gurney. It simply took all my strength just to move from a prone to an upright position. Each time, I had to reach for one or more helping hands.

My room was in Prentice Women’s Hospital, while the CT scan equipment is in Galter or Feinberg Pavilion. We descended into the bowels, then proceeded what seemed an interminable distance. I don’t remember much except the surreal sensation that comes naturally with being wheeled on a gurney through long stretches of hospital basement hallways, broken mainly by scenic paintings, automatic external defibrillators (adult and child versions), and emergency signs and equipment. I also recall the weakness I felt transferring onto the CT bed and back, the hands reaching to help me, and how quickly it was done — in that sense, much preferable to an MRI.

I don’t remember much of Tuesday or Wednesday, which were largely featureless. I used my iPhone as long as the battery lasted. I figured out how to use the room’s TV/computer system, which seemed to hark back to the old WebTV. I watched students play baseball on the two diamonds below and the boats in the harbor and on the lake. I began to feel that I had never really learned how to live and that I had missed out on much in life, that the ball players, dog walkers, and boaters were all privy to secrets and pleasures that elude me. And I chafed at my constant restraints, the catheter and the IV. Finally, I don’t know when, the catheter was removed, bloodily and painfully, which gave me the freedom if not the energy to roam the halls, including the one circumference prescribed. I discovered a patient/family education center and a visitors lounge, both with computers, which I used to email Virgil and others.

By Tuesday dinner, I was deemed capable of a solid diet, and I was starting to feel hungry, so I ordered perhaps a little too ambitiously. I learned later that, if I had not ordered something, dining services would have called me. If your doctor has ordered a diet, they don’t let you get away with not eating, whether you wish to or not.

I felt okay yet not good on Wednesday. I thought that if I could just go home, I could rest and feel better, as I had after the UFE. It didn’t help that was I was fighting constant nausea and even had an incident in the handy bedside basin. I was told that one of the primary conditions of my release was the ability to keep oral pain medications down — something that nausea and vomiting were making problematic.

By Thursday afternoon, though, I wanted out. Although I sensed some reluctance, I was finally deemed ready for prime time, and J. agreed to pick me up after work. He arrived at 7 p.m., and we set off, first for Walgreens, armed with prescriptions.

At the pharmacy, it took longer than I expected, and after 15 minutes or so I started to wonder if a trip outside to get the basin I’d thoughtfully brought with me was in order. The nausea I thought was under control hit me hard. Although vomiting provided no relief, it probably did raise the eyebrows of the fellow who saw me emptying the basin, I thought discreetly, into the bushes outside the store.

Once home, I set J. up as best I could, showered, and fell into bed — where I could get only snatches of sleep between the terrible gas pains in my bowels and the equally awful nausea/acid and trips to relieve it, followed by the need to clean up the mess. It was the most vile vomiting I’d ever experienced, almost as though my internal organs had liquidated and were being voided through the mouth. It reminded me of the beef bouillon I’d had Sunday, as though it had fermented in my stomach for the past 72 hours.

I’m not sure when I’ve ever felt more wretched. And I had only myself to blame for pretending my symptoms were better than they were.

By 4 a.m., I was shivering uncontrollably. Later, after I had closed the window against the refreshingly cool night air, I started to sweat. My esophagus was in acidic flames, and even I had had enough. I called Dr. M. at around 5:30 a.m. To my surprise, he answered. He asked me my temperature (I didn’t know then, but took it a few minutes later — 102.4ºF), asked other questions, and told me to come straight back to the 14th floor of Prentice. All I wanted was that fire in my esophagus put out and to stop feeling so woozy. I roused J. and packed my bag, this time, remembering to include the iPhone adapter as well as my sponge bag — even in my feverish state I had that much presence of mind.

By 6 o’clock we were on Lake Shore Drive, me with my window rolled all the way down so the 60-degree wind could take the edge off the fever and sweating.

At the hospital, there was some delay with security, and I dragged myself to a seat while they figured out what to do with me and J. dealt with the valets. On 14, I veered instinctively toward Room 1462, which had since been occupied, but J. and my hospital escort firmly steered me toward Room 1464. After I was settled on the bed and my bag stowed, J. went to work, and I was left for quite a while to contemplate the unrelenting burning in my esophagus. Over the next couple of hours it dissipated, the nurses finally started an IV with antibiotics (being more concerned about the fever), and I accustomed myself to the thought of another night in the hospital.

Dr. M. wanted to make sure the sliver hadn’t moved, and so I was scheduled for another CT scan at 3:30 p.m., this time with and without contrast dye. Through some snafu or other, I wasn’t picked up until shortly before 6 p.m. I was still on pain medications, so I wasn’t in much pain, but I was in no condition to do anything except send emails through the WebTV-like room system, watch the weather, try to find something on television that wasn’t unbearable, and otherwise kill time until 3:30 p.m. and then past it.

Not long after Dr. M. had dropped in Friday afternoon, I had developed diarrhea — a sign that my bowels had come back online, if imperfectly. “That’s good!” he said enthusiastically when I told him later. “Do you always have that effect on people?” I shot back, which made him shake his head ruefully. Even Monday night J. had commented that my “wit” never left me, even under the influence.

By the time Patient Escort Services came for me before 6 p.m., I wasn’t sure I wouldn’t embarrass myself — at one point, either during my first or second visit, I’d already had a soiling incident. Sure enough, while waiting I had to go. And go again. And again. Just as they were about to run me through the machine the first time, without dye, I said, “I have to run,” and I did. In all, I made six or eight trips to the CT scan area’s facilities. At least at a hospital, most are sympathetic.

Next came Phase II — consumption of two 450ml bottles of barium sulfate, the contrast dye solution. Whimsically, one was labeled, “Berries,” the other “Apple.” (My first choice, “Banana,” which I thought least likely to aggravate my ongoing nausea, was unavailable.) Because of the nausea, I had warned everyone that I that I might not be able to keep the stuff down. The taste and texture didn’t help.

I was distracted by a conversation with a fellow patient, who sported a kerchief over her head and a deep red sickle wound under each eye. She looked like she’d been in an accident or on the losing end of domestic violence. She told me that the chronic sinus infection that had plagued her had proved to be a sinus tumor and that it had been removed the old-fashioned way — by going down through her head. “I look like I’ve been in a wreck, I know,” she said. Then, using J.’s words almost exactly, she added, “You, on the other hand, look fabulous. May I ask why you’re here?” “That’s because you can’t see my belly,” I answered. Not only did it look like a Frankenstein experiment, with the incision through the navel, two large and two small laparoscopic “ports,” and the larger mini-laparotomy incision on top of my appendectomy scar, but it was grotesquely distended with gas and distorted, with the bottom of the old scar even more pulled in and a bigger divot missing — not a sight for the squeamish or delicate.

I drank the two bottles within the allotted hour (it was now 8 p.m.) and hinted that I couldn’t be held responsible for keeping it down if there were any delay. Coincidentally, I was next — and somehow I did manage to keep it down. In fact, I think that by this point I had nothing left to give at either end, although the queasiness continued.

In the back of my mind, I wondered if J. had stopped by during the height of visiting hours and found me missing. When I was wheeled back into my room at 8:50 p.m., there he was, handing me a note about how he had to go back to work and how he had scrounged dinner at Argo Tea, discovered the hospital’s wireless network for guests, and fallen asleep over his iPod Touch. He stayed with me for a while, lured by the possibilities of wireless downloads. He really had to go, however, when around 9:20 p.m. I started to drool involuntarily and ran for the bathroom, saying, “Oh, I’m going to throw up” (although, as it turned out, the nausea passed and I didn’t).

“Uh-oh, well, I really do have to get back to work,” he replied. With that, my “nurse” unceremoniously bailed with unusual alacrity.

The CT scans revealed that the tenaculum tip was still in the abdominal muscle. They also revealed another unwelcome guest — a “big” gallstone, which was possibly the culprit behind some pancreatic inflammation, the nausea, and even fever.

IMG_0225

I was scheduled for an ultrasound the next day to get a better look at my gallstone and the inflammation. This time, unlike for the previous night’s CT scan, I was taken lying down on a gurney against my will. The reason for this became clear, though, as the ultrasound technician performed his examination of me on the gurney — no transferring needed. It wasn’t too bad, except on a few passes he dug the wand into my tender abdomen. Owww. I asked for his unofficial verdict. “Your gallstone looks like it’s between one and one and one-half inches,” he answered. “That doesn’t seem that big,” I said later to Dr. M., who looked surprised and said, “It is. Typically gallstones are described in terms of grains of sand.” Oh.

The ultrasound also showed the inflammation was under control, probably thanks to the antibiotics. My temperature was consistently normal, the tenaculum tip was ruled out as a cause, and I was deemed fit to try to eat again. Indeed, I was told this time that if I could keep Saturday dinner and Sunday lunch and breakfast down, as well as oral medications, I could go home Sunday.

On Saturday afternoon I noticed the boats in the harbor pulling up quite closely to each other in rows. The nurse who came to reinstall my recalcitrant IV told me that the boaters pass from vessel to vessel drinking and having a good time, while the police keep a cautious eye on the festivities. It sounded like they do this a few times a summer as a tradition.

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In the meantime, one of us noticed that I had developed ugly red welts on the insides of both forearms — an allergic reaction that mystified everyone as I’d been on the antibiotics for a while, and they thought the contrast dye an unlikely culprit for this delayed response. (I read later that it may have been additives.) Congratulations to me — I’d just earned several doses of IV Benadryl.

When Dr. M. came in after 9 p.m., sporting a sweat suit, he apologized for his tardiness and explained he’d had a commitment to his daughter. I was impressed he came in at all. By this time, my arms had cleared up, but when he took the obligatory look at my abdomen, he spotted welts all over my upper thighs. My body had not liked something.

Later, he was working at a computer in the Patient Care Center when I took a spin around the floor in the hope that exercise would act as a sleep aid. When he saw me pass by on the return trip, he seemed startled. “You walk faster than I do,” he observed. I don’t know if this is true, but by Saturday night I did feel much better than I had 40 hours earlier, and there was more of a spring in my step, I’m sure. Now if only I could keep down two more meals.

Dr. M. had found my dinner choice of whole wheat toast and cooked carrots “interesting,” while the nurses weren’t happy when they learned, too late, of it. “No whole grains, no vegetables, not with diarrhea,” they said. “In this case, fruits and vegetables aren’t healthy.” One recommended eggs or macaroni and cheese. Later, the new shift nurse dismissed eggs as “too fatty.” So for breakfast I ate white toast and drank four ounces of apple juice over a three-hour period, just enough to claim I had eaten. By lunch time, I wasn’t hungry. and I tried to sleep through it. This is when I found out that there is no evading dining services. If you are supposed to be eating, they will call you, wake you out of a sound sleep, and patiently wait for you to make up your mind. I asked her for recommendations, and she suggested eggs as “an easily digested protein.” I mentioned the nurse’s concern about fat, and — why had I not thought of the obvious? — she pointed out that they can be scrambled, etc., without the yolk. Eggs it was, plus one of the three apple juices they had left for me in the morning.

The IV was removed at some point on Sunday, and by noon I had, according to my purse pedometer, walked 1.01 miles, another feat that impressed Dr. M. That was my final burst of energy for the day because, after all that activity, the equivalent of two eggs, and the third and final apple juice, I didn’t feel like stirring.

Around 2 p.m., while those outside my window were savoring another perfect Sunday, I conked out hard. I’ll never know how long I might have slept because almost exactly at 4 p.m., a knock at the door interrupted a particularly intriguing dream. It took some time and effort to rouse myself, by which time a woman had bustled in, saying perkily, “Respiratory Services with oxygen!” Clearly, this wasn’t intended for me, although earlier in the week I had been chided by a nurse or two for not using my deep breathing visualization toy when in bed. “When I’m in bed, I’m usually asleep and can’t!” I’d retorted. They’d looked at me strangely.

Dr. M. made an appearance, this time in a t-shirt and shorts over which he’d thrown a lab coat to look more official. Maybe I said something, because he mentioned that when he comes downtown for only one thing he drives his vintage convertible. I told him he hadn’t had to come just to see me, but perhaps he did, because I was soon to be released. Free at last! For some reason, though, I had become very depressed during the day, which I mentioned and which I think he’d noticed. It may have been the prospect of going home alone, of not knowing what I was going to do with myself, and of uncertainty all around, but I also thought it might have been attributable to the effects of anesthesia, change, and strangeness, combined with my unhappy memory of Thursday night and Friday morning.

The nurse called in a couple of prescriptions to Walgreens (which is what I should have had done on Thursday) while I packed and waited 30 to 45 minutes for Patient Escort Services. Although capable of walking, I’d opted for a wheelchair because I still felt weak and lethargic, or just tired.

It turns out that cabs don’t come by that way often, and both my escort and one of the valets ventured out in search of cabs for me and for a family that was also waiting with a discharged patient. Finally, a cab pulled up to drop a woman off, and I anxiously asked him if he accepted credit or debit cards. My escort stepped up with a remonstrance about letting the previous passenger settle the fare with the driver, but I wanted to know the answer because if he didn’t, I’d cede my place to the waiting family. There’s nothing like being lectured about manners at such a time!

It worked out. The driver waited for me at Walgreens while I picked up and paid for the prescriptions and got cash back (why hadn’t I thought of that before, which would have spared me the lecture?).

uterine fibroid

And so ends the saga of Ignatius, the tenacious but benign fibroid (according to the pathologist). According to Dr. M., its post-embolization size was 12 centimeters, and it weighed 1,074 grams. I’d reminded Dr. M. that I’d wanted Ignatius in a jar, and he had dryly responded, “It would have taken a bucket!”

At one point during the week when Dr. M. had seemed a little discouraged about the tenaculum incident, it occurred to me that I hadn’t told him how I felt. So I did — even only few days later, even with gas pain and incision soreness, I could tell that my lower back tiredness, ache, and pain were 1,000 percent better and that the surgery had made a huge difference. He quite brightened and said, “That’s good!” Even experienced surgeons need reassurance. It is true, however — I wasn’t buttering anyone’s bread. The disgusting hard spot underneath my navel is gone, my uterus is no longer the size of an eighteen-week pregnancy, I don’t feel bulky and bloated, I don’t have a constant urge to urinate, and wonderfully, my back and legs feel normal without the pressure of the fibroid against my spine and nerves. In return, my already grotesque appendectomy scar is even more distorted, my activities are a little restricted for a longer period than planned, and I’ll probably feel the pull of scar tissue for a longer time, as I did after the appendectomy. The pain, fever, and tedium were worth the long-term results. At my age, I don’t think it’s likely I’ll grow another Ignatius.

Of course, the truly terrifying parts are yet to come — the bills.

Related posts:
The plot to murder Ignatius, part one — June 14, 2008
The plot to murder Ignatius, part two — June 15, 2008
Ignatius, the friendless fibroid — July 26, 2008
18 August 2008: The day of reckoning for Ignatius — August 26, 2008
Snuffed but not forgotten: Ignatius, the large, dead fibroid — April 29, 2009
Where’s Ignatius? (or, find the fibroid) — June 16, 2009
Ignatius the tenacious — June 21, 2009

Posted in Blog, Life | Tagged fibroid, health, photo | 6 Replies

Ignatius the tenacious

words and images Posted on June 21, 2009 by dlschirfDecember 4, 2021
fibroid-cropped copy

In this episode of General Hospital, on Tuesday the 16th, the day after my annual physical, I set off for Northwestern Memorial Hospital to consult Dr. M. about performing a laparoscopic myomectomy on the remains of Ignatius, the tenacious fibroid that, eight months after an 18 August 2008 uterine fibroid embolization (UFE), had shrunk no more than 1 centimeter. As you can see in the MRI image, Ignatius still takes up more space than some vital organs. My back and legs hurt, I feel bloated, and my bladder capacity seems to be less than a cup of coffee, let alone a mug. It has to go, and I was hoping that Dr. M. would be willing to take this project on, despite its size and mine.

I didn’t complete any paperwork, so after introducing himself and sitting me down, Dr. M. asked the status and health questions you’d expect from a gynecologist, including the name of my current gynecologist (“Oh, she’s very good.”). One question threw me off, however: “Are you in a relationship? That seemed awfully personal. What happened to the traditional, tried-and-true “Are you single, married, divorced, or widowed?”? I supposed “partnered” (if awkward in construction) could be added to cover every base, but “Are you in a relationship?” sounded like something I’d expect from a therapist or match.com.

I answered with a simple “no.” But the things I wanted to say . . .

He asked me the question every specialist who’s new to me asks: “Why are you here?” I find this disconcerting because in most cases, including this one, they know why — they have a referral. Sometimes I feel like it’s a test to see if I can describe my condition accurately enough to eliminate the possibility of hypochondria. I told him what I knew, about how long I’d known it, how the UFE had proven to be ineffective, and that I’d been told he may be able to perform a laparoscopic myomectomy. “I think you have the images.” Indeed, he did. I thought so.

He’d asked me if I’d considered a hysterectomy, and I said “no” in a tone that I hoped conveyed resolve. He warned me that the myomectomy could turn into a hysterectomy (I’d received the same warning about the UFE), but quickly added, “But I’ve never had to do that.” Later I noticed he’d written “NO hysterectomy” in his notes, too.

Dr. M. noted a couple of risk factors, neither of which, to my surprise, was my weight. The first was the long appendectomy scar on the right side of my abdomen that runs from a little below the level of my navel to the level of my pubic bone. The other is the degenerated nature of Ignatius, which is no longer solid muscle tissue but more of a cream cheese consistency, as he put it. It might take two hours, he said, then corrected himself to three, presumably because of its size and consistency. I brought up the size again, and he said that not many besides him would do this on me. I’m not sure I found that as reassuring as it was intended to be, but at least he said the uterine wall is in good shape.

On the way to the examining room, where he wanted to see my scar, I told him that my fibroid is named Ignatius. He asked if I call it “Iggie” or any other nickname, but I said we try to keep a more formal relationship (appropriate, I think, when one party has killed and is now trying to excise the other). He rattled off some of the other names he’d heard from other patients, although I don’t remember them. When I mentioned that I would have liked to have had the pre-UFE Ignatius in a jar, he offered to take photos. I liked this in him — he allows a certain sense of humor and humanity to show, unlike many physicians. He didn’t correct anything I said or explain anything that I already knew, so I felt like I was being treated like an intelligent and informed patient — whatever the actual case may be.

The appendectomy scar, it appears, is far enough over that it shouldn’t be a factor. He marked the likely incision points (I’ve forgotten how many — six?), none of which is very close to the scar. They seemed to form a circle around my navel. This should look interesting afterward! He asked if the scar bothers me, and I said no (while it’s a little more sensitive to touch and used to “pull” a little once in a while, for the most part I don’t notice it except for its ghastly appearance). If it bothers me, he said, he could have a plastic surgeon take care of it. The offer was tempting, but my share of just the myomectomy is probably going to be enough to break my bank.

In the meantime, when he pressed on Ignatius, I told him that I could feel it in my bladder, which needed relief already.

The more I look at the MRI image, the more I am convinced that Ignatius is not only compressing my bladder, but my spine and nerves as well, causing lower backache and occasional searing leg pains and numbness. I will soon find out.

I’ve scheduled the surgery and the pre-operative appointments (one at 7:30 a.m. on my birthday!) and received instructions. Recovery from the myomectomy seems easier and less complicated than recovery from the UFE. Dr. M. didn’t give me a definitive amount of time I’d need off (two weeks for the UFE), an there seems to be only one prescription (narcotic) painkiller and ibuprofen recommended, compared to the four prescription painkillers, antibiotics, and anti-inflammatory medications plus two nonprescription stool softeners for the UFE. I was told not to lift anything greater than 10 pounds after the UFE (Hodge fits into that category, which is part of why he took an extended vacation), but I see that I am “encouraged” not only to walk and engage in moderate exercise, but to lift up to 25 pounds. (Still, Hodge is due for another extended vacation, I think. Nothing like being chased by a fanged beast when you’re recovering from surgery.)

This time, I feel less hesitant about the necessity. I’m used to how I feel, but as Dr. T. said, “That can’t feel very good.” It’s like being 16 weeks pregnant — but for years. I want to walk without aching — and without having to be within earshot of civilization and plumbing. The 24 to 36 hours after the UFE were relentlessly painful, but I can look forward to that again if it means getting 95 percent (Dr. M.’s estimate of what he can do in this case, vs. 99 percent) of the invader’s mass off my innards and spine. It’s getting on my nerves. Literally.

Imagine — all this time, trouble, and expense began as a single muscle cell run amok.

Thirty-seven days and counting.

Addendum: J.’s reaction to the image: Is it the huge thing that reminds me of a steak because of the large white thing at the bottom (makes me think of fat on a steak)? [Note: The large white thing is my uterus.]

Posted in Blog, Life | Tagged fibroid, health, photo | 5 Replies

Where’s Ignatius? (or, find the fibroid)

fibroid-cropped copy

I’ll post an update when I have time, energy, and energy and time, but for now enjoy this April 2009 MRI view of Ignatius, the persistent subserosal fibroid.

June 16, 2009 by dlschirf Posted in Blog, Life Tagged fibroid, health, photo Reply

Snuffed but not forgotten: Ignatius, the large, dead fibroid

words and images Posted on April 29, 2009 by dlschirfMarch 23, 2019

After an MRI and a couple of weeks of indecision (fear), I scheduled a uterine fibroid embolization (UFE) for August 18, 2008. The target: an 11.7 cm by 16.2 cm by 13.9 cm fibroid dubbed Ignatius, perched like an conquering emperor atop my uterus — incidentally flattening my bladder into a pancake with a slight bulb at one end. If I seem to disappear into the ladies’ room excessively, Ignatius is the cause. There isn’t much bladder to my bladder.

The UFE went according to plan, although my system is still a little confused. I had spotting in January, light periods in February and March, and, to date, a delayed one in April — a delay which has made me feel lousy and in perpetual PMS mode, achy, tense, and cranky. Crankier than usual.

I’ve felt a little better since the UFE, but not dramatically so. I’m not surprised Ignatius didn’t strike me as the type who would “go gentle into that good night.” I was supposed to have a follow-up MRI in three months, but put it off until it was past eight months later, that is, until Tuesday, April 21, 2009. The question: How much had Ignatius shrunk without its blood supply?

I went to a different place at Northwestern Memorial Hospital than I had for the first MRI, and there was virtually no wait. The moment I’d completed the forms, I was called and shown where to disrobe by a no-nonsense, humor-impaired nurse. I’d barely touched the seat of a chair when I was called by the technician.

Before we could begin, she had to check my fit in the MRI equipment. I arranged my arms, the left one not too bent because of the IV, in the traditional pose of a corpse, she pushed the button, and in I slid.

Partway in the slab’s movement stopped, leaving me nose to ceiling with the machine and nowhere to go.

I could feel my heart and breathing rates accelerating, as though gearing up for a full-blown panic attack. Once, many years ago, I’d had a closed MRI scan on my head (the problem: a persistent sun-induced migraine) and at first had thought it was not so bad. About 20–25 minutes into it, however, I realized how completely immobilized and trapped I was. It, too, was a tight fit, and it occurred to me that if an atomic bomb fell, I did not have enough leverage to get myself out without help. Suddenly, it wasn’t so easy to breathe deeply.

You must admit that, despite the irrationality of the idea I’d survive a nuclear weapon attack only to die trapped in an MRI scanner, at least I was practical about my lack of means of escape.

At this point in my reminiscence, the technician, as though reading my mind, assured me that my head would be out (partly, as it turned out — I was still nose to ceiling with the tube, but if I rolled my eyes up I could see the room behind me. She backed me out, fitted me with hip pads, fussed some more, and put me back in.

Previously, I’d been given orders not to breathe/to breathe through noise-blocking headphones, which worked well. This time, however, I was given earplugs to block the noise. I didn’t breathe or not breathe on command, however, although I thought I was following her muffled instructions pretty well. Surprised that she hadn’t noticed how many times I had asked her to repeat herself (which she may be used to, as English is not her first language), I told her that I’m hard of hearing. At that, she left the earplugs hanging uselessly and most uncomfortably out of my ears; still, they didn’t cause nearly the discomfort that the wedgie I’d managed to give myself just before I had come into the room.

And so I spent approximately 30 minutes trying to ignore the wedgie and to breathe in and out on demand. At one point the technician backed me out again to have me center myself better, but on the whole I thought it went well.

She had a different opinion, which I soon heard about.

The moment she retrieved me, she began to berate me for not requesting the larger MRI scanner. (Honest, I don’t not do these things on purpose.) With the smaller scanner, it took longer, she said, and it was harder on me and on her. She told me the name of the machine to ask for. As if I had not gotten the point the first time, she told me a dozen more. When she returned me to the no-nonsense nurse, she said the same thing to her a half dozen times (the nurse: “Oh . . . hmmm.”), then she wrote the name of the machine on my paperwork, lest I forget.

I had a distinct sense of, “I don’t ever want to see you at my machine again [until you’ve lost 100 pounds].”

Of course, I’d like not to have any more MRI scans, which would solve her problem and mine.

After getting dressed (an important step given the that the next stop was at another building), I wandered over to Doctor Atomic’s area, where I picked up a pager and sat in an area where I was the only woman among the middle-aged men. One flipped his way through a selection of reading materials from his briefcase — the Financial Times, Fortune, Money. I wanted to ask, “Say, you don’t happen to have Scientific American, National Geographic, or the Utne Reader in there, do you?”

Soon an elderly woman came along and asked a more casually dressed man if she could sit next to him. He agreed warmly, but returned to his own reading even as she tried to strike up a conversation. She asked him how long he’d been waiting and mentioned that she lives nearby. After she finished a cup of coffee, she asked him where she could throw it out, and he gallantly took care of it for her just before he was called in. After that, whenever she heard a pager, or a staff person came to the door, she thought it must be her turn. When they called a nonfunctional pager number, she struggled to read hers. just in case And, wouldn’t you know it, she did have one of the nonfunctional pagers. A number was called, and she had to ask if it was hers. She reminded me a little of my dad in his old age, when he thought always that he must be next. I used to think it was a form of self-centeredness peculiar to the very young and very old, but now, especially since I’ve lost some hearing ability, I wonder if some of it is simply compensation for sensory deficits — you can’t hear and can’t see well, so you worry that they called you or buzzed or lit up your pager and you missed it. That, combined with heightened respect for time, can make elders seem impatient. We all have to be mindful of how we interpret and judge the actions of others.

My pager buzzed next, and I left [soldier of] Fortune to his capitalist dreams (there I go, interpreting and judging). I talked to the nurse for a bit, then waited for Doctor Atomic. I’d met him twice before, the day we discussed my previous MRI images and the day after the UFE, when he came in with a resident to make sure I was still breathing and resting uncomfortably. When he arrived this day, he shook my hand and methodically went through my symptoms, some of which I didn’t remember. Frequent urination — mildly improved. Bulk feeling — mildly improved. Lower back pain — mildly improved. Bloating and gas — wait, had I said that? I must have. By now, I was feeling badly that the procedure didn’t appear to have been a resounding success, so I assured him that the symptoms I couldn’t remember were much improved.

We turned to the before/after images. Seen at a comparable angle, Ignatius has shrunk from 13 centimeters to 12 centimeters, or just one centimeter. It’s still large. It’s still making a pancake of my bladder. But, as Doctor Atomic noted, we’d done what we wanted to do — we’d killed it. It’s just a solid gray mass on the screen, with no blood supply. It’s dead, Jim.

Now I have two alternatives, which means I have only one as a hysterectomy short of malignancy is not an option for me. The other, Doctor Atomic suggested, is a laparoscopic myomectomy, in which Ignatius’s remains would be cut up and removed laparoscopically. Because of my weight, an abdominal myomectomy isn’t a good option. Doctor Atomic said he would consult with Dr. M, a gynecologist, and let me know if he thought the laparoscopic approach might work for me.

And so on Monday, the 27th, Doctor Atomic called to tell me that Dr. M had seen my images (now there are two men who have been exposed to the more elusive bits of my reproductive system), and he thinks a laparoscopic myomectomy would do the trick for me. Yesterday I called Dr. M’s office and made an appointment for June 16.

Truth to tell, I’m less nervous now about another procedure than I am about taking another two-week medical leave in this unforgiving economy and environment. You might think that, in troubled times, people would be more supportive — after all, we’re under the same pressures in the same leaky boat. Difficulty can bring out the best in people, but I’m also seeing how it can bring out some undesirable qualities, too — including defensiveness and inappropriate competitiveness. Two weeks of leave may open the door further to attack, and who knows what I will find when I return?

Why do I get the feeling the late, unlamented Ignatius is laughing at me even as its remains weigh heavily upon my mind — and my bladder?

Posted in Blog, Life | Tagged fibroid, health | 2 Replies

18 August 2008: Day of reckoning for Ignatius

words and images Posted on August 26, 2008 by dlschirfFebruary 12, 2020

What follows is more information about the uterine fibroid embolization (UFE) process from a patient perspective than you want or need to know, unless you’re considering it for yourself. You have been warned.

I woke up, packed in a daze, and arrived at the hospital early, closer to 6:30 than 7 a.m. After a 15–20 minute wait, I was escorted to one of three curtained areas in a “holding/recovery” room. I can’t say things happened quickly because it felt like time stood still, but according to the clock across the room in relatively short order I had been connected to heart-monitoring equipment and given compression stockings in sexy white followed later by boots.

The nurse asked me if I had any issues with an IV in my hand, and I replied that when I was 14 IVs tried in both hands had made them swell and that the night nurses had had to cut off my hospital ID bracelet. I couldn’t say why — whether it was from small veins or from my bad habit of flexing my wrist. After palpable indecision for a minute or two as she passed from hand to elbow to hand, she finally went for the left hand — and promptly told me to stop flexing my wrist.

I was also treated to what I most dreaded — the urethral catheter. By this point, I was in pain from lying on my back (albeit with my head elevated) — and the catheter sealed my sense of entrapment. Now, between the rigid arm tethered to the IV and the catheter, I wasn’t going to be going anywhere on my own. I began to wonder, not for the first time, if it were too late to back out gracefully, to say, “You know, I really don’t think I want to do this. Can I please leave now?”

In preparation for the epidural, the nurse checked the pulse on top of each foot and on the inside of each ankle. I passed muster because she said, “Your pulse is strong.” It’s always reassuring to hear that your heart beats and your blood flows. I suppose you wouldn’t hear the contrary. She marked each point with an X in what seems to be indelible marker — a week later, after several showers, I could still see traces.

The possibility of leaving was still a comfort to me even after Dr. Epidural had come in and worked his magic on my back. Dr. Atomic had recommended the epidural route, and it had been heartily endorsed earlier by the holding nurse, with much breathiness and many near-orgasmic sighs. She said she’d had one a few months earlier and added, several times, “Ohhh . . . it was nice. Ohhh . . . you’ll like it.” Later I saw her showing baby photos to her co-workers, so that confirmed my suspicion about why she’d had an epidural.

The curtained area to my left was hopping with visitors and chatter. I had seen the woman in the waiting room, so I knew she wasn’t Oprah, but still I marveled at her evident popularity compared to my lonelinessindependence. At last I discovered that she works at the hospital. Advantage; Lots of friends and support. Disadvantage: No privacy.

To my right was someone who sounded older and resigned. I began to see this as an assembly-line operation and tried to think about anything but the pain and pressure in my lower back as the popular woman was wheeled away. I was tired from lack of sleep and felt aware but not alert, probably more aware than I should have been.

Finally Ms. Popular was wheeled back into her area, snoring stertorously. The nurse told me in a confidential and reassuring tone, “See, she slept through the entire procedure, and she’s still asleep,” implying that maybe I would be so lucky.

My mind was at that state of exhaustion, disorientation, and nervousness that made that kind of relaxation impossible. Even her steady, deep, monotonous snoring on the other side of the curtain didn’t lull me to sleep, so I was wide awake when they came for me.

By now, my back was threatening to snap under the pressure and constraint — a situation that deteriorated when I helped to transfer myself to a flat table on which the procedure was to take place. One of the nurses, sensing my discomfort, asked if I wanted a pillow for under my knees, then, perhaps on cue from another nurse, added, “I almost forgot what procedure this is!” No pillow and no comfort for me.

I saw at least two nurses and a man I assumed was a doctor (he introduced himself, I’m sure) who I think later inserted the arterial catheter, but no sign of Dr. Atomic. One of the nurses shaved around the arteries on both sides, apologizing for some reason for the quality of her electric razor (I didn’t notice any issues and felt the moment a little surreal).

After this I don’t recall much except perhaps an occasional image or sense of people moving around. All I could see very well was an enormous device above, which I assumed was for imaging. Although I wasn’t fully awake, I wasn’t oblivious as under general anesthesia. This passing into and out of awareness is a deeply strange sensation; there is nothing to hold onto in either realm.

In what seemed like short order (perhaps under two hours), I was told to slide myself back onto the bed. “Don’t move your right leg. Don’t raise your head,” which made me bend my leg and raise my head. “Take your time — don’t bend your leg and don’t raise your head,” the voice said again. The voice resolved itself into the nurse who kept reminding me not to raise my head — in vain, because I could not stop raising my head. “Don’t raise your head — it puts pressure on the artery.” Forget the artery — I need to see something other than the ceiling!

The next stop was my room, which seemed to be ready pretty quickly, at least in my newly distorted time reference. I had mastered keeping my head down, more or less, but periodically my right leg insisted on trying to move. I was told that it wasn’t allowed that liberty for four hours, which I calculated to be at about 4:30 p.m. My. This was proving to be a long day.

By now, I was tethered to not only the IV/epidural and the urine collection bag, but oxygen as well (although I could at least remove this, which I did once or twice, probably to assert my independence). I figured out that I wasn’t going anywhere at any point soon and so I succumbed to sleep, left arm and right leg appropriately unmoving.

At last I was allowed to move my right leg, which meant only that I could bend it a little, flex my toes, and take the edge off its boredom. Now I was more interested in getting rid of the catheter, which I found out would be my intimate companion until the next morning. Every now and then I would feel a burning sensation centered on it and even told some of the parade of nurses that I felt like I really had to use the bathroom — a puzzling statement to me as well as to them. As hard to believe as it may be, it was only in the wee hours of the morning that I discovered that this burning sensation was really uterine cramping and pain and that using the epidural button (which I had not done much) would keep it at bay.

Trapped as I was, there was nothing to do but try to watch TV. Of course, nothing was of interest to me, and I’d given up finding anything other than the scenic slide show by the time the patient services person came by to explain the features, if I wanted (I didn’t). I wasn’t in the mood for sitcoms, news, or sports.

I called my cousin’s wife, then later let J. know that visiting hours were until 8:30 p.m., not that that was a hint. He duly arrived with flowers and the reassurance that I looked and sounded good (which I think he will still be telling me at my funeral). I don’t remember what we talked about, probably his work, only that I wanted him to catch his train, and so did he.

I’d been puzzled by a shrink-wrapped contraption sitting on my tray, but during the night one of the nurses unwrapped it and told me it was a breathing exercise device. I found that taking a deep breath and holding it kept a ball at the top of a column, while expelling the breath dropped the ball. I tried it several times, but was horrified that I simply couldn’t hold my breath long enough to keep the ball up more than a second. I don’t know if I passed. It was cute, and I wish I had thought to bring it home with me, perhaps to see if I can do better now.

When I was most fidgety, I was told that my body needed rest more than anything else. But “23-hour observation” doesn’t mean rest; it means 23+ hours of interruptions. Every time that I felt like I had sunk into a deliciously deep, pain-free sleep, I was awakened by one of the parade of nurses who took my blood pressure and temperature (it seemed hourly), emptied the bladder bag, replaced the IV solution and medications as necessary, and otherwise observed me highly efficiently. One even noticed that my compression boots had not been plugged into the machine, so overnight my legs received a wonderful, constant massage.

At least three times during the evening and wee hours, my blood pressure was low enough to set off the machine. All the nurses but one took my low, sometimes too low, blood pressure in stride, and I assumed that the epidural was the culprit (later confirmed when my blood pressure returned to normal shortly after it was removed). One nurse, however, seemed bothered by it and asked me repeatedly if my blood pressure is typically that low; I’m not sure she understood my tired, “I think it’s the epidural.” As I say, it was only during those hours that I discovered what I’d felt as an urge to urinate was really uterine cramping (I must have been more out of it than I realize) and that the epidural button became my friend.

Of course, just as I had mastered epidural pain control it was cut off at around 7:30 a.m., and an anesthesiologist and nurse came to remove it. No . . . Until then, I had been surprised by how minimal the pain had been, all things considered. Now I would find out just what I had been missing. Before they left, the anesthesiologist had me bend both legs and wiggle both sets of toes and seemed impressed by the strength of my performance.

Dr. Atomic arrived with another doctor, presumably a resident, whom he introduced. He gave me the rundown on the medications, told me that the worst part may be the constipation, and asked me to be “patient with the pain.” Easy for him to say. I remember staring at him, feeling like I was shrinking into the bed, and thinking completely irrationally, “YOU! YOU DID THIS TO ME!” If doctors only knew. He checked my feet pulse points and told me my pulse is strong. I get the impression the pulse in my feet may be strong.

Before or after this, I’m not sure which, a nurse had emptied the bag. Ten minutes later a different nurse came in for a urine sample, looked at the bag, and said, “She just emptied that, didn’t she?” I could only look apologetic. I certainly wasn’t in control of output.

Later, when I was free of the epidural, oxygen, and alarmingly pink catheter, two cheery assistants straight from a sitcom audition came and told me to take a walk or several around the floor. No problem. I’ll just head out the door here and . . . wobble like a baby taking its first steps. Well, looky at this handy handrail that someone set in the wall the length of the hallway. The handrail-less doors might be tricky. I made one circuit, took a break, made another, took another break, and may have taken a third. The comedians watched me, disappeared, came back, and suggested I might want to freshen up. That bad, eh?

It was now close to the 10 a.m. witching hour, and I thought I might be free to leave, so I asked. No, now they wanted a urine sample and proof that my urinary tract was functional. Alas, my first effort, 100 ml, was apparently not up to snuff. Next, I tried to fool them with cumulative efforts. Finally, I asked just how much they wanted. 600 ml. “Really, it may not be until later this afternoon,” the day nurse said. I drank as much water as I could stand — and later threw up for the second time. Where was the nausea coming from?

Meanwhile, the pain had kicked in. I rang for the poor nurse every time I used the “hat” in the bathroom, when I vomited, and when I couldn’t take the pain any more — which was horrifyingly frequent. Each time she’d call the doctor — I don’t know which one — and give me a shot through the connection in my hand. I’d lie down but couldn’t get comfortable. I’d walk but it would feel no better. I’d try sitting upright, but it still seized me. This pain was intense for several hours, and it may have been it rather than medication making me nauseated. Someone from dining services called around noon and helpfully asked if I would like to order lunch. No, I don’t think so. Meanwhile, I’d given up 300 ml over two tries.

This was when I asked the nurse how much urine they wanted, and she said, “It was really that it was cloudy, but it’s clear now, so that’s fine.”

Aha! So now I could go home.

“Should I call my friend to pick me up? It will take him at least an hour to get here.”

“No.”

“No?”

“Your pain isn’t under control.”

No, it wasn’t. By now I had learned to rate my pain on a scale of 1 to 10. On Monday, my answers had been mostly 4s. Tuesday morning and early afternoon, they were a shaky, white-faced 10. I wasn’t fooling the nurse, who had used her powers of persuasion to get me additional IV doses.

What it came down to, she said, was that my pain had to be managed with oral medication only, and I wasn’t at that point yet. It was hard to argue. To prove that I was improving, however, at around 2 p.m. I reported once that it was a 9.5. “That means a 10.”

I can’t put anything over on anybody.

By 3:30 p.m., I was too uncomfortable to sit, lie down, or walk. The hospital bed and chair were too confining, and I wanted to go home and sprawl in my own bed.

The nurse was not convinced. “You don’t have to leave, and I don’t think your pain is managed yet,” she said, accurately.

Each of us was right in her own way. My pain level was still high, despite the combination of oral and IV medications. I had a feeling, though, that if I could relax in familiar surroundings, the pain would resolve itself sooner. Reluctantly, she agreed to let me go. I called J., and at about 4:30 p.m. I tucked myself, my bag, and my flowers into the wheelchair, minding what the nurse had said. “You’d better take the basin with you. Just in case.”

I still felt miserable, but I could sense that I’d been through the worst of it. As I waited more than an hour, at least I was somewhat distracted by the happier patients in the departure lounge. One couple with a newborn struggled to rein in the exuberance of two older boys. Another couple, with a woman who was perhaps a sister or a cousin, emerged from the doorway with two carriers, two blankets, and two balloons proclaiming “It’s A Baby Boy” and “It’s A Baby Girl.” While I was killing Ignatius the feisty fibroid, others were clearly being more productive.

J. arrived, and the bumpy, stop-and-start rush-hour ride contributed to the fuss Ignatius was making in his death throes. I know I was irritable and disoriented, yet too aware of my burning belly.

I walked in the door and, after very few preliminaries, undressed and headed straight for bed. At around 8 p.m. I emerged, helped J. with the air mattress and sheets, took and ticked off all the medications on the spreadsheet, and collapsed again. At 11 p.m., I kicked J. out of the bathroom (he was just done). For the next two days, until Friday morning (he left Wednesday night), all I remember is sleeping and taking and tracking medications. By Friday morning, I felt relatively good. The cramping and bleeding seemed to have ended, and I was ready to return to normalcy — so I walked the half mile to Bonjour.

I’ve been very fortunate, both before and after. My symptoms were minimal in nature and impact, and after the UFE I was able to sleep away the pain in a few days. I’m not fully myself, and my lower back protests, especially in the morning. Mostly (not entirely), I don’t feel that constant “itch” to relieve myself. And I no longer feel a hard mass below my navel, which had become both repulsive and compelling. I’m not sure, but I think I might make the same choice.

It’s been at least 33 years since I spent a night in a hospital and four years since I was under general anesthesia. As I lay in pain, or watching the nurses about their work, or listening to Dr. Atomic assure me all had gone as expected, I realized that my hospital experiences, positive as they had been — on the whole, I’d received good care on the three occasions, at three different hospitals — had made me feel violated. In some way, it’s the loss of control; in another, for me, it’s the nearly instantaneous disorientation I feel in such a strange, modernistic environment. More than a week later, I still feel like a Star Trek character might whose cells have been rearranged and are out of sync with the universe. Now I imagine how strange I will feel when I return to work next Tuesday.

Footnote: I must not be 100 percent. I just fell flat on my face on the sidewalk — interestingly, a dream-fear I’ve had for a few days.

Posted in Blog, Life | Tagged fibroid, health | 4 Replies

Ignatius the friendless fibroid

words and images Posted on July 26, 2008 by dlschirfMay 14, 2020

Like me, Ignatius is a loner.

As I reported earlier, I decided to explore the possibility of a UFE, or uterine fibroid embolization, procedure. On Tuesday, July 22, I took the first step with an MRI scan and a consultation with Dr. V., an interventional radiologist.

Despite my best efforts to be late, I arrived a little early. After I’d been chided for standing in the wrong line (I was supposed to intuit the process) and after being asked for the insurance card I’d handed over three minutes earlier, I found myself with a pager. I wondered if I was in a hospital or the Cheesecake Factory.

I’d settled into a chair and cracked a book for the wait when it dawned on me I didn’t know where to go when called (in hindsight, it was very obvious, but I wasn’t thinking straight that morning), so I backtracked down the hall to the information desk. Just as I was asking, the pager buzzed and lit up impatiently. That was quick! Mr. Information told me to retreat the way I had come and to go to the double doors. “If you don’t respond to the pager, they call you, and then . . .”

I was slightly panicky because, according to the paperwork, I should have verified with the [new] insurer that the MRI scan had been pre-certified. Now they tell me. Or remind me. I think that I will never master the art of adulthood and responsibility, and wonder how many hundreds this particularly dimwitted oversight will cost me.

A young man, the first of many people whose names I didn’t catch or remember, told me how and where to undress and stash my stuff. When he called me, now fashionably dressed in matching back-and-front gowns and green booties. I called back for help. He found me wrestling with the locker key, which it turns out requires a token that had fallen to the floor. My blood was definitely bypassing my brain.

Next stop: Blood tests and IV needle. This MRI scan requires the use of contrast dye, which in turn requires healthy kidneys. I acknowledged that I’m not on dialysis (“that I know of”). After running my contribution through a desktop gizmo, the cheery nurse reported that my kidneys are “working well.” “Too well,” I muttered, as I was hit by another urge. (This proved to be a day of frequent urges.)
Next, I was taken to a waiting room where I had just about enough time to notice the House Beautiful pile before another woman came for me. I don’t think it was even 9:30 yet, and already I was in the MRI room.

She plugged in the IV tube, gave me a cool rush of saline, and told me what to expect:

  • The MRI scan would take 30–45 minutes.
  • I should lie as still as possible.
  • I would have a squeeze ball to alert her if I needed anything (I took this to mean, “If you become claustrophobic and panicky”).
  • She would be able to see and hear me (camera).
  • The table would move, but I shouldn’t.
  • During the scan, she would tell me through headphones to hold my breath until instructed to breathe again. Oh, the power!

I lay down on the table like a sacrifice as she and another woman put a heavy band across my mid-section, stuck a cap on my head, and propped my calves over a large pillow (even a sacrifice needs blood flow).

All set?

Let the games began.

I’d read that the technology has improved since my last MRI scan (of my head) and that the equipment is larger (obesity epidemic) and more open. Previously, I just fit, with my arms pinned to my side, my nose nearly touching the top, and no leverage to back out. It was like being in one of those coffins with the split top, only with the head covered and the legs exposed. I’m not particularly claustrophobic, but that time I did start feeling trapped and unable to escape at about the 25-minute mark.

By comparison, this was great. My forehead was sticking out one end so I could see a bit of the ceiling, I had room to move my arms (even if I couldn’t), and I didn’t feel like there was no way to get out without help in an emergency. (With a lot of effort, I think I could have backed out because more of my legs were free.) The squeeze ball nurse call is a bit of comfort, I suppose.

The hard part was holding my breath as many times as she asked me to, for up to 20–25 seconds. It wouldn’t be bad sitting up, but it’s a little problematic at my size in the prone position (one of the forms had a question about breathing issues lying down, but I didn’t think it would be one — but then I didn’t know about holding my breath). When I did hold my breath, loud, rhythmic sounds would kick in — not the same sound or rhythm, but different ones at different times. I distracted myself from the feeling I was suffocating myself by counting to the rhythm and trying to visualize it. The mind has many coping mechanisms, even for coping with something as unnatural as an MRI scan.

Finally, she told me that this was the last time I would have to hold my breath and that they were almost done. The timing was perfect, because I imagined I was feeling the effects of diminished oxygen.

After completing a survey, dressing, and asking Mr. Information the way, I made it to the next stop: the heart/vein area, because, I suppose, that’s where most embolizations are performed. I checked in with my insurance card and received another pager, which buzzed and lit as soon as I had settled on a seat. Such efficiency!

I’m not sure who picked me up; she may have been one of those mentioned on Dr. V.’s Web site. She confirmed my information and left, to be succeeded by Dr. V.

Dr. V. asked about how and when I discovered Ignatius and the grief he gives me, and how much I know about UFE. He gave me a folder with more information. I asked if fibroids were causing my urinary problems. “I think so. Look at this,” he said, as we got down to the business of checking the bastard out.

It turns out ultrasounds aren’t very reliable for pinpointing fibroids. There, on the computer screen, was Ignatius, a single 13-centimeter fibroid perched on top of my uterus, not far from my spine. There were no others. Just Ignatius. His weight is pressing down, flattening (“pancaking,” as Dr. V. put it) the oval of my bladder so that it’s a little bubbled on one end. Dr. V. said, “Here’s a more dramatic view,” adding, “There’s not a lot of capacity there.” He can’t be sure, but agreed that Ignatius could be affecting my lower back.

The images were fascinating. How often do you get to see your own innards? There mine were — dominated by a chunk of slowly growing muscle tissue.

Dr. V. told me what to expect from the procedure, described the pain management options, and talked about the logistics. He was open about the risks, mentioning “death” first, and covering infection requiring hysterectomy, premature menopause, and so forth. He answered the questions I remembered to ask about UFE (I forgot several) and reminded me to read the material and the Web site. I asked him about particle migration, and he told me a joke about why doctors cost so much. I must have been distracted and not laughed, because he told me it was just a little joke, and the point is that, having performed more than 3,000 UFEs, they are experienced, and that a complication like that is usually the result of inexperience.

He thinks I’m a good candidate and that infection is unlikely because of Ignatius’s location. (Apparently, the combination of his size and location is a bit unusual. Typical.) I asked about the likelihood of recurrence given my age and proximity to perimenopause (I don’t think I’m quite there yet, but am probably close), and he said that Ignatius didn’t happen overnight — he’s been growing, in his estimation, at least 10 years. Ten years! 1998 was a bad year in many, many ways.
He told me to contact his patient access representative to schedule the UFE. I checked out then, hoping that the last person I talked to really did change my status on the printout from “self-insured.” Yikes.

I’m still mulling and still looking at discouraging photos, still thinking that my symptoms aren’t that bad, still thinking that it’s possible I could feel a lot better with a tamed and reduced Ignatius.
To celebrate surviving the MRI scan and the consultation, I splashed boiling water on my bare stomach above the navel and then did everything wrong, from not applying a cool cloth and then opening the blister to using antibiotic and an improper bandage. Now I have a lovely second-degree burn that, fortunately, is healing in spite of my ignorance.
And a little decision.

Posted in Blog, Life | Tagged fibroid, health | 4 Replies

The plot to murder Ignatius, part two

words and images Posted on June 15, 2008 by dlschirfMarch 23, 2019

Before I left the gynecologist’s office, I made an appointment for an ultrasound for the next morning. Later it occurred to me that I hadn’t been told to drink lots of water beforehand. I was even more confused when the administrative assistant and the ultrasound technician both asked me if I needed to use the bathroom.

“Don’t you need the person to have a full bladder so you can see?” I asked the technician. I told her about my previous experiences.

“No, we don’t have to do it that way anymore,” she replied.

As she went about her preparations, the back of my mind mulled this. The technology hadn’t changed that much, so I was mystified by the change in direction. Hesitatingly, I asked what was different now that a full bladder is no longer required.

“With a vaginal ultrasound, a full bladder would just get in the way,” she explained.

A vaginal ultrasound? I’d never had one and wasn’t going to now, I thought, as I eyed a wand sticking up from the machine with suspicion.

I told her I wanted an abdominal ultrasound only.

“Well, that’s a problem because I won’t be able to see what I need,” she said, explaining why and adding a discreet reference to the size of my stomach.

“I won’t have it done.”

“I’m not comfortable doing an abdominal only because it’s not going to show what we need to see.”

“And I’m not comfortable with a vaginal ultrasound.”

After a few rounds, it became clear we had reached an impasse.

She paused in her preparations, and I could see her mentally weighing how to handle this. I couldn’t be talked or forced into a vaginal ultrasound, yet I wouldn’t there if the gynecologist hadn’t wanted a look. She sighed.

“Tell you what,” she said. “I’ll look to see how much water you need to drink, and we’ll try it.”

So she looked. And looked again. And kept looking without stopping to have me drink water.

“Can you see anything?” I asked.

“Yes. I can see your left ovary, which is good. Your uterus is so large that this is going to work out fine. The only thing that the vaginal ultrasound would have picked up that this can’t is your cervix, which your doctor can see during an exam.” She paused and said brightly, “See, the patient knows best!”

“I don’t know anything,” I said, “except that I wouldn’t like a vaginal ultrasound.”

She laughed. “No one likes it!”

She told me there are two fibroids to the left and either a third large one or a large cluster of several smaller ones. She gave me the measurements, which I was not in a position to write down. I remember, I think, three inches by four inches and four inches by four inches for two of them. Cumulatively, the measurements would be about 10 inches each way. She confirmed my doctor’s estimation that the uterus is the size of a 20-week pregnancy. With ruler in hand, I can see why that would be considered “enormous” or “huge” and how it might cause bladder and other discomfort. Next week the gynecologist will tell me what she thinks.

A UFE is starting to look like a possibility . . .

Posted in Blog, Life | Tagged fibroid, health | Leave a reply

The plot to murder Ignatius, part one

words and images Posted on June 14, 2008 by dlschirfMarch 23, 2019

At last, after two missed appointments due to bad timing, I met my new gynecologist. Like many contemporary physicians, she has ditched the traditional unisex lab coat and practical shoes. She has opted to sport a dress and heels, both of which looked uncomfortable to me.

Her assistant performed the usual preliminaries (height, weight, blood pressure) and asked me if I wanted her to be present during the examination. I am not sure I understand why having Stranger 1 in the employ of Stranger 2 present while Stranger 2 examines me would be desired. Having one stranger checking out your nude, vulnerable body seems uncomfortable enough without a witness.

The doctor met with me in her office, which was decorated with appropriate texts (Complete Gynecology), family portraits and candids, and knickknacks. Despite the touches, it didn’t reveal any personality. Even the family photos could have been anyone’s family photos, a thought that makes me sad. On the surface at least, we are not as unique as we like to think.

She asked the usual questions, then the conversation turned to my primary interest — Ignatius and his fellow fibroids. Her recommendation is a uterine fibroid embolization, or UFE, in which “microspheres” are inserted via the femoral and uterine arteries to block or decrease the blood flow to the fibroids (a form of slow fibroid murder). While not a surgery, the procedure is not without risks, of course, which I have to weight against the discomfort to which I seem to have become accustomed. I could carry on without a UFE, although Ignatius and company are showing a disturbing tendency to grow. On the other hand, a number of women say that they felt immensely better within days of their UFE and that they are glad they had it performed. As Virgil says, something that large can’t feel right. And who doesn’t want to feel immensely better, especially when they have a vague feeling they don’t feel as well as they could?

Then we moved to the examination room and got down to business. At the sight of my scar, she expressed shock. “I thought you said you had an appendectomy? That’s a big scar!” (Curious, I later measured it; it’s about seven or eight inches long and one-eighth to one-quarter inch wide.) I explained my understanding of what happened, which is that my “hot potato” appendix was hiding demurely behind my bowel, necessitating a search-and-rescue party. Now even I wonder why it required an incision the length of two hands side by side.

Her first attempt with the pap smear was unsuccessful because the swab was too short, or, as she put it, “You have a long vagina,” which, I think, qualifies as one of those things one doesn’t need to know about one’s own anatomy.

She must have struck the proverbial pay dirt with the second attempt because for an eternity it felt like an enraged pit bull had a very sensitive internal part in the grip in the grip of its sharp teeth and powerful jaws. I bit my lip. I tried, unsuccessfully, to suppress groans and even a tear or two. Finally, the pit bull let go. I’m sure I would have remembered that much pain during previous samplings! I blame Ignatius.

After the breast exam, always fun when I’m in the throes of PMS, it didn’t take much effort for her to find my uterus, which is “huge.” (“Enormous” or “huge” — take your pick. I gather that it’s a bit larger than the norm.) Naturally, between the fat and the fibroids, she couldn’t feel my ovaries — they’ve been in hiding for several years. Clearly an ultrasound was in order.

Next: Fun with the ultrasound technician.

Posted in Blog, Life | Tagged fibroid, health | Leave a reply

Name my uterine fibroid

words and images Posted on March 10, 2007 by dlschirfFebruary 6, 2019

Frustrated with being denied a pregnancy, my uterus has struck back by sprouting a fibroid. As if to prove its maternal ability to nourish and cherish, my uterus has not only produced a fibroid, but is growing it as well. I’m told that it has achieved the size of a 16-week pregnancy.
The truth is, I’m not sure what is going on in there. Two years ago, an ultrasound revealed “two fist-sized fibroids and numerous smaller ones.” At the time, I did not know what a fibroid was, let alone that my uterus was one of millions set on developing them.

After poring over many fibroid photos on the Internet, I must say that it’s a good thing fibroids are an internal condition because they have no aesthetic value at all, unless you are looking for something to inspire you with an alien monster design for your next straight-to-DVD bargain bin movie. They look like solid, smooth, shiny, red balls of muscles on steroids. They can be very small, or they can grow to the size of a watermelon or even larger. (Aside to my uterus: That is not a suggestion.) In some cases, they have even shared a womb with the baby for which the organ is designed. (Aside to my uterus: We won’t be attempting that.)

Two years ago, the gynecologist couldn’t be sure I had fibroids without an ultrasound. Today, even I can feel its hardness a little below my navel. It figures that the only hard muscular tissue my entire body sports would be in what should be the softest part of my belly.

So I have a fibroid, or two, or several. What is the next step? I’m supposed to schedule an appointment for another ultrasound, as I have an unfounded suspicion that my uterine rebellion is crowding my bladder and causing some issues. The mostly likely outcome is that I will ignore it; then, at menopause, it will shrink of its own accord if not provided with estrogen therapy. It’s not that big, and despite the bad behavior of my uterus I wish to keep it. We humans are fond of our body parts, even the non- and malfunctioning ones.

Posted in Blog, Life | Tagged fibroid, health | 2 Replies

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