Forgive me blog readers, for I have sinned. It has been longer than I care to assess since my last posting. And it’s not for lack of things going on. It’s just that too MUCH has been going on. And it’s felt private as it’s been happening, and I have learned over many instances of premature-blogification, that sometimes writing IN the moment is far less accurate and fair than waiting until after the moment has passed.
The moment has nearly passed, I think, so I feel okay putting fingers to keyboard. For a quickie at least.
In October, I fell asleep while reading in bed with a heating pad under the small of my back. Who knows now whether Ambien was involved, or just a mixture of tiredness and a high threshhold for pain, but the next day, I woke up with a large, second degree burn on my right breast. It was about five centimeters long by three centimeters wide. It ran the length of my mastectomy scar and was in the eye of the radiation storm that brutalized me eight summers ago. For a moment, seeing the blister that arose on my breast, I wondered, “Is this cancer again? Has the beast awoken and determined to lay siege upon my largely unsuspecting body?” But that moment passed, and I realized exactly what had happened. I had rolled over while the heating pad was still on, and in mere moments, the weakened radiated skin gave way to the heat, like a scrap of newspaper to a cigarette.
I was embarassed, yes, I was. I did not want any doctor to see this. This was stupidity on my part, and I decided to suffer in silence. I treated the burn like I would treat any burn, and over the course of months, it healed. Mostly. By January, all that was left was a scab that was the size of nickel. I was pleased, although impatient, because avoiding a doctor’s help with this meant blowing off my December appointment with Dr. H, my oncologist. Not that it mattered much, as, (a) thankfully, I am no longer much of a priority patient at Dr. H’s office, and (b) little did I know that I was about to be seen by more doctors than I had seen in the past eight years in total.
On January 23, I went to a friend’s son’s bar mitzvah and danced “crazy”, so sayeth my 13-year old mortified son an his 13-year old admiring friends. The next day, I woke up and the scab had ripped away from the edge of my skin. Only instead of there being pink and healthy skin beneth it, there was nothing but a hole. The hole went about a half a centimeter deep, and at the bottom of the hole was nothing but blackness.
I had never seen anything like it in my life.
I immediately googled third degree burns, but this did not look like burned flesh at all. This looked like a black balloon under my skin. Heh? My implant couldn’t be showing through, could it? And in any event, my implant was clear silicone. Not black. Unless the burn had blackened it. Unless this was actually a collection of blood – bruise of sorts.
Doctor!! Yes, it was time to call a doctor, and that I did. But what kind? My oncologist, my surgeon, they would only refer me to a specialist of some sort. But what sort? And then it hit me: a burn specialist in the burn unit of a hospital. I made the appointment for two days later (I would have gone in sooner, but there were no appointments available). The night before my appointment, spiked a 103 degree fever. The next day, my friend S drove me to the hospital for my appointment, where Dr. Y, the head of the Burn Unit, immediately admitted me to for several days of IV antibiotics and to be assessed by the plastic surgery service for removal of the implant, which, yes, was poking through my skin, or what was left of my skin.
Here are the bare bones of what happened next:
Two days later, Dr. M, the partner of the plastic surgeon who had originally placed my implant, removed my implant as a means toward getting the hole in my breast to close. I was started on hyperbaric therapy for two hours a day, five days a week. And I was in the hospital for five days, on an IV drip of Clindamycin, a very very bad bad bad antibiotic, known for its tendency to cause the overgrowth of C. Difficil, a very very very bad bacteria, in the intestines.
But that could never happen to me. I am strong! I never get sick to my stomach! When the Infectious Disease Service paid me a visit to discuss the warning signs, which could come even weeks after the termination of the Clindamycin therapy, I worried not a bit. And then I went home, armed with another type of antibiotic – Levaquin – and no right breast. Just a flat plane with a hole in it.
Of course, the removal of the implant was traumatic. For a moment or two. I begged and bargained with Dr. M. Please, couldn’t he just place a NEW implant in there right away? No, that wouldn’t allow the wound to heal. Please, could we talk about WHEN a new implant can go in? No, because there won’t be a new implant as the radiated skin has deteriorated over the last eight years to the point where the loss of the implant was inevitable, burn or no burn. So, if I wanted a new breast at some point, it was going to have to be made of tissue from my own body – a hunk of my butt, most likely. An not until the wound had healed and all signs of infection were gone.
This devestated me. Again, for a moment. But in that moment, I felt the irony of having planned my double mastectomy for reasons that included NOT wanting to be lopsided. Not wanting to be a “uniboob”. Symmetry is beauty. And now I was being rendered assymetrical It seemed horribly, poetically UNjust. And then a moment later, I was online, looking at bras that have pockets to hold what I euphemistically call “chicken cutlets”, but which are really breast prosthesis. And the bras with pockets? They’re really “mastectomy bras”. Words that are hard to saw, hard to swallow, hard to think of in relation to myself. But the photos on the web were great, and they gave me hope. So, the moment of devestation passed.
My focus became healing so that I would be healthy for my son, B’s bar mitzvah, which was February 27. Less than a month away. I came home from the hospital, and the first thing that I did was to try on my dresses and assess the damage. To my delight, in my clothing, you couldn’t tell that anything was different at all. In fact, the deconstructed side looked better than the reconstructed side, since the reconstruction had been an epic fail anyway – lopsided, too high, flat on one side. Having this new challenge, of stuffing an empty bra cup gave me new inspiration to make the other side look better too.
During this time, I was not doing any exercise at all, but now, a week after my surgery, I was cleared to do whatever I wanted. And what I decided to do was a full-on yoga practice. The next day, I awoke with intense pain in my right shoulder and a fever of 101. Not good. Not sure if the fever was related. But I hoped the shoulder was. Because it it wasn’t, then it might have been a sign of a new infection. Or worse. In my fevered delirium and frustration, I imagined that the shoulder pain was a sign of a new cancer or a metastasis, one in my lungs, or worse. I cried a lot that day until my husband, E, put a stop to the madness. He called my doctor and got Dr. M to talk reason to me.
Dr. M surmised that a fever of 101 is not a sign of recurring infection necessarily, and perhaps I had caught a touch of flu. We connected the shoulder pain to the fever and the yoga, and we decided to assess the wound the next day.
As it turned out, the wound was not healing at all. In the walls of the wound, you could see each separate layer of skin, alone, disconnected to each other layer of skin. It looked ugly. It looked unhealthy. It didn’t look infected exactly. But it seemed clear that more surgery would be needed to remove more skin and all of the remaining scar tissue from my original reconstructive surgery.
It did not occur to anyone at this time, despite the warnings of the Infectious Disease Doctor, that the fever might be the first sign of C. Diff. Of course, when my stomach began rumbling loudly and felt unusually bloated, that was a bit more telling. Finally, on February 6, while at the bar mitzvah of another friend’s son, I found myself stuck in the bathroom for what seemed like the better part of an hour. It wasn’t that I had to go. It was that I felt like I had to go. I had these cramps that told me that I needed to empty my intestines. But there was nothing in there at all. They were phantom spasms. And my fever was spiking.
I suffered through it until Monday the 8th, when I saw Dr. K at the Hyberbaric Center at the hospital. He told me I needed to be tested for C. Diff by my internist. The thought of bringing yet another doctor into the fray really disturbed me, and I mentally resisted it. But when I got into my car that afternoon, I drove straight over to Dr. A, my internist. Dr. A expressed some dismay that he had not been kept in the loop throughout all of this drama. And he gave me prescriptions for some probiotics that might have stood in the way of my having gotten C. Diff in the first place. If only. Ah well, bygones. And then he handed me two kits by which I was to deposit stool samples and deliver them to the lab for culturing.
I won’t go into the repulsion that is gathering stool samples, including the mucking around in them with tiny little spoons that you are required to do, but I will say that I would imagine that I had it relatively easy, since at that point, there wasn’t much coming out of me other than blood, water and mucous. Sorry. I know. Imagine. Or rather, don’t. Stool samples gathered, I brought them to the lab. A day later, my C. Diff was confirmed. And counterintuitively, I was placed on a whole different antibiotic: Flagyl, which kills C. Diff (or is at least the first line of defense against it; if that fails, there is one another: Vancomycin). If you’ve never taken Flagyl, then you don’t know that you can’t drink any alcohol on it at all, period. Not sure why, although I have heard that it causes intense stomach cramps when mixed with alcohol and that Flagyl may be used as behavior modification therapy for alcoholics.
The stomach problems ebbed and flowed, for lack of a better word, for the next few weeks, as I awaited insurance approval for yet another breast surgery and prepared for Brian’s bar mitzvah.
Surgery Number 2 was on Feburary 16, just two weeks before B’s bar mitzvah. And it was a success. Within days of the surgery, the wound began sticking together, the layers of skin now indistinguishable to the untrained eye, the edges drawing toward each other. As a result of the surgeries, my once-nickel-sized wound was now about six centimeters by five centimeters, and a centimeter deep. That was disturbing to see. And it was disturbing to learn how to dress the wound myself, with long layers of wet gauze smooshed into the crevises (“undermining”) and covered with a piece of dry gauze, and then all of that covered with an ace bandage wrapped around my torso.
But I find that I can get used to just about anything. Or to put it another way, there is almost nothing that has turned out to be as bad as I imagine it to be. So far. I leave room for the awful possibility that someday something may turn out to be far worse. But for now, I have had the lovely luck of having an imagination that far exceeds reality in terms of its awfulness.
My life settled into a boring, strange, otherworldly pattern. Each day, I would wake up and laze around the house until mid-morning when I would get ready to drive the half hour over to the hyperbaric chamber, at the hospital. This was the center of my health care. This is where I saw Dr. M, and Dr. K, the doctor in charge of my hyperbaric therapy. This is where I spent two hours of every day in a glass tube, breathing hyperoxygenated air and catching up on movies I hadn’t seen. Then I would come home and my kids would just be getting home, and I would take care of some bar-mitzvah-related errand, and then I’d make dinner. Then I would stay up til all hours of the night because the thought of going to sleep and waking up and starting all over again was just too depressing. So, sleep would come to me while I was watching television. I wouldn’t go to it. It had to come to me.
To be continued….