My head is not exploding. Not anymore.
For weeks, perhaps months it seemed as if my head was exploding. And when my head wasn’t, my heart was.
I realize now that I treated things rather blithely in my last blog entry (October 24, 2009). I guess that’s just the way I was feeling that day. It was a rarity then and that light frame of mind was not to return for many weeks to come. I am only just now returning to some level of sanity. This cancer thing has been kicking my ass.
Shortly after I wrote that brief (for me) entry, I got a call from my surgeon. I was sitting behind the wheel of the car. Diane and I had stopped to pick up our mail at the “mail station” in our apartment complex when my cell phone whistled. Like so many people, I have a pretty silly ring tone; it sounds like Slim Whitman whistling a cowboy song. It's true, my phone whistles a tune.
It wasn’t the ring tone that was memorable however. I had been waiting for weeks for this call. I’d been at the cancer center earlier that very day for a different appointment and had stopped in and Dr. Brenin office where he had promised to call me as soon as he had the pathology report back. He was expecting the report late that day and sure enough, my caller i.d. indicated it was indeed Brenin’s office whistling me up. It was Dr. Brenin himself. He didn’t mince any words, he never does. The report wasn’t good. The sample was not “clean.” In fact the words that he used were, “non-invasive carcinoma and other abnormalities are pervasive throughout the sample.”
CLANG! CLANG! CLANG! It was hard to hear anything beyond that. "Pervasive." "Throughout the sample" he'd said.
Three relatively minor surgeries. Each one uncovering more invasive or non-invasive carcinoma. Brenin reeled me in for a minute by reminding me that what they found this time was NON-invasive carcinoma. Diane was staring at me; I was shaking my head. I give her the thumbs down sign. I finally find my voice and ask Dr. Brenin, “What does this mean? What are you recommending?” He pulls no punches, minces no words: “A full mastectomy.” I am struck dumb. A fleet few seconds feels like a lifetime before I can clear my throat. When I do so, I sound very reasonable and calm. I am not. My heart is in my throat. I remind Dr. Brenin that I already have an appointment to see him in two days time and we can discuss all of this in greater detail then. He agrees and reminds me there is no particular urgency but that we should make some decisions. It is he that has to remind me that I have to “get on with my life” that I need to “put this behind me.” I calmly agree. I am the last person who wants this medical misadventure to drag on any longer than it already has. I hang up the phone and the tears quickly spill over. I relay Dr. Brenin’s words to Diane and I just can’t stop it, I am sobbing now, head resting on the steering wheel. Diane is crying too and trying to find a way to comfort me and needing to be comforted herself. I am no help. We just cry for a little while and we hold on to each other. I am soon cried out and need a Kleenex. We drive up the hill and trudge the stairs to our apartment. I’m going to have to tell my family and friends but I can’t do it yet. I can’t even think about it.
Two days later I am in Dr. Brenin’s consulting room. I sit on the edge of the low examination table and he on the little round stool that rolls toward me. He shares with me in detail that the tissue sample has “a little bit of everything” – interductal hyperplasia (abnormally forming and dividing cells), Ductal Carcinoma In Situ (DCIS) – cancer that has not yet invaded the tissue outside the ducts – Lobular carcinoma in situ,– like DCIS, cancerous but not yet malignant, all tissue that may presage malignancy but that I don’t yet have malignant lesions in this area. And they may NEVER become malignant. But we already know that similar tissue in the same area did become malignant (removed in the first lumpectomy back in July). Thus the likelihood that any of this abnormal, precancerous or non-invasive carcinoma tissue will become malignant is predictably high. Will it definitely become invasive carcinoma? There’s no way to tell. Is there anyway to avoid it? Yes. Mastectomy.
CLANG! CLANG! CLANG! CLANG! Complete removal of all of the breast tissue. That's what we're talking about.
“Now wait a minute….. we’re just talking about what’s going on in my left breast right?”
“That’s right” nods Dr. Brenin.
“But what about the right side? Right now, we only know about what’s going on in the left side and that's thanks to the lab work - at a cellular level… because of pathology reports. There's not anything we can see on a mammogram or an MRI or in any other way. How do we know what’s going on in the right side?” I all but stammer..
“That's right. We don’t, we can’t.” agrees Brenin.
CLANG! CLANG! CLANG! CLANG! getting louder in my head....
“Do I need to consider having a double mastectomy?”
“Well, I’m generally not a proponent of prophylactic mastectomy. We don’t recommend removing a healthy breast. It’s very difficult recovery and often an unnecessary risk for no good reason” Brenin frowns.
"But how do we know it’s ‘healthy?’ “ says I. My heart is racing.
Brenin flips open the chart and takes a closer look. “We talked about genetic testing?” We did. “Oh yes, I remember, your mother had breast cancer, and your father’s an Ashkenazi Jew.”
CLANG! CLANG! CLANG!
Why is there so much noise inside my head? Why can’t I think clearly? What? What possible difference can my religion make? (and for chrissakes I'm not even Jewish in that sense!)
Apparently, it makes quite a lot of difference. It’s nothing to do with belief, it’s all about genetics. Just as African Americans are more likely to carry a genetic marker for Sickle Cell Anemia, Ashkenazi (Eastern European) Jews are more likely to carry a genetic marker making us more susceptible to breast cancer. There are two markers actually BRAC-1 and BRAC-2. Oh great. ANOTHER designer gene I’m likely to have inherited! I got the queer gene, the alcoholic gene, the bi-polar gene, the diabetic gene… okay well I also got the smart genes and the tall genes and the good looking genes. But now you tell me there’s a Jewish gene for breast cancer? Oh for the love of god. Why didn’t we stay in Egypt and assimilate when we had the chance ??
Ten minutes later I am cloistered with the Genetic Counselor getting a refresher course in the science of Mendel’s genetic theories (he of the pea plants) and having my family’s cancer history diagramed on a family tree. My father’s side is pretty truncated as - apart from my father who had an angio-sarcoma excised last year - we only know about my grandmother, her brother and a half brother. The rest of his once large family – including my father’s father and sister - died in the Holocaust years before any kind of cancer might have felled them. Ah well, there you have it! See? Cancer treatment – not so bad after all compared to death by Holocaust is it?
Based on my risk factors and genetic history (or lack thereof in Dad’s case) I qualify for genetic testing as a means of finding out what the risk of developing breast cancer in my RIGHT breast might be.
There is no question - or so my mind keeps reminding me at full volume night and day - “They are going to cut that left one off! They are going to cut it off! Cut it off!
But now there is the question, what of the other side? The genetic testing is to help decide the wisdom of removing both at the same time – one because of what we already know, and one because of what we are able to predict and therefore take pre-emptive action. My mind is completely frozen and fixated on that horror. And so another little vial of blood off to some lab that I will never see to have my genes analyzed. More weeks of waiting.
Waiting. Always the waiting. My mind continues to go clang! clang! clang! Day and night for weeks.
Two weeks later and finally some good news: no genetic marker. Does it mean that I will never develop cancer in the other side? No of course not. It just means the risk is lower. It’s all a game of roullette you see.
Did you know that treating cancer was a gambler’s game?
I took a calculated risk at the beginning of this process that the first lumpectomy would be enough – would “get it all” so to speak. It didn’t. I took another chance that the second excision (another lumpectomy essentially) would do the trick. It too failed. In between we had the scare about chemotherapy – told that the adjuvant risk was high – a one in four chance of cancer occurring elsewhere in my body and chemotherapy inevitable to reduce that risk. Instead I gambled on a special molecular level test to determine my individual chance of recurrence and from that I am told this risk is in fact low. More recently, in October I was told to bet one more time on yet a third excision in the hope of getting a clear bill but that too was not to pan out. The house appears to be winning. Let us hope my losing streak is over.
In this round I am gambling on the genetic testing and opting to have only one breast removed. Only one.
clang! clang! clang!
Ah but the fun has only just begun. Now we have to determine what happens after they lop that puppy off. I had casually thrown out that I would opt for reconstruction on my visit to Dr. Brenin and he had equally casually thrown out the term “TRAM flap reconstruction.” I had no idea what that meant but boy howdy was I about to get an education.
It turns out there are several options for “reconstruction” – including one that I never considered: no reconstruction at all. I cannot even begin to explain why I never considered NO reconstruction. I just didn’t.
I think I’m not going to describe the choices and procedures here. None of them are pleasant. If you’re really interested in the details, you may wish to google “muscle sparing TRAM flap.” That’s what I’m having done. What I will describe is the process of figuring it out.
While waiting for the genetic test results, Dr. Brenin referred me to a plastic surgeon to talk about the reconstruction. Both the mastectomy and reconstruction can (and in my case, will) be done at the same time. Or at least the major part of the reconstruction.
The plastic surgeon I went to pissed me off right out of the gate by keeping me waiting for over an hour. That is no way to treat a patient. Especially one whose head is exploding anew with every passing day. I spent another 45 minutes with a resident who explained everything I wasn’t interested in - I’d already done quite a lot of reading about TRAM flaps and implants on my own. Then I put up with another :30 minutes of being “measured” by a dizzy nurse – who by her own admission had been forced to retire except for this dubious assignment that she did as a “volunteer.” Her job was to try to “size” me for implants, which I’d already determined I did not think I wanted to have. Her method of “sizing” involved cocking her head sidewise and casting a critical glance at my chest (with which she was about eye level) then grabbing a handful (of me) and trying to compare that to another handful of silicone implant. Then she asked my thoughts on the matter, handing me the silicone-filled sac. I thought it was too large. She went for a smaller one and for fifteen minutes kept getting her silicone implant sizes confused. In the end, she wrote down the wrong one (after she, myself and the resident all agreed I was a 550 cc silicone implant candidate, she wrote down 650 cc – I simply sighed and ignored it as I had no plans to have that done anyway).
Then the cocky, loudmouthed little surgeon himself swanned in. He listened to not one word I said and - like the others - assumed I would be having implants. Surgeon – having himself decided what he wanted to do - called Brenin’s office to coordinate schedules and come up with a surgery date. Then they all left me alone with a basket of still jiggling silicone gel to wait for someone to photograph me. They never explained the purpose of taking the photographs, but it was somehow very degrading – like having mug shots taken of your bare breasts. “Turn to the side… face to the right…. now to the left, straight ahead now please.”
I left there mad, confused and somehow believing I should have implants done. The surgeons’ schedules fully synced and an operating room reserved such that I was scheduled for surgery on December 22nd.
I should say that there’s nothing wrong with implants. Many women opt for them and are very happy with the results. It’s just that I felt the drawbacks outweighed the purported simplicity of the surgery (compared to the TRAM flap reconstruction). Implants have to be replaced every 10-15 years. They can be damaged (say in a car accident); if I gain or lose weight, the implants will not change - though the other side will. Most of all, I did not like the sound of “expanders” for weeks and weeks followed with going back for placement of the final “implants” – another major surgery. I also thought that at my age (nearly 50) it is unnatural to turn up suddenly and permanently “perky” as implants would make me. A little applied gravity can be a good thing when aging gracefully. And if only doing one side, it would leave me quite “asymmetrical.” (at that time I did not yet know if I was doing one or both). Most of all, I did not appreciate the fact that I had not been consulted in my own treatment. I was confused, and though I didn’t realize it right away, angry and frightened.
Thank goodness UVA gave me other resources. One of them is a book. A really good book that has provided me with so much of the “technical” information I’ve needed to understand this whole process. It has surprised me to find out that apparently many patients are not interested in the “technical” details of their cancer or treatment(s) and do not wish to take part in educating themselves or making decisions about their treatment. Instead, many of them simply accept what their doctors tell them to do. I find that simply shocking. In my view, knowing more rather than less about cancer and the treatment I can expect relieves fear and anxiety and has helped me make better decisions by helping me to ask better questions. Teaching myself the vocabulary of cancer and its treatments allows me to understand my medical providers, to decipher their mumbo jumbo and to pick apart the answers they give to my sometimes very simple questions. It is after all, my body. One of the best resources they gave me is a 2 inch thick tome by a breast cancer specialist and surgeon, entitled Dr. Susan Love’s Breast Book.” I have gone back to it again and again through this nightmare summer and fall. The other is a book called, The Breast Reconstruction Guidebook by Kathy Steligo. Both have been indispensable and if you know someone that is going through this process, I strongly recommend both.
(N.B. Even with reconstruction, because I will, by default, lose some skin during the mastectomy, I will get a “natural” lift. Fortunately, the law requires that my insurance pay for reconstruction AND requires that it must also pay for them to do whatever is necessary to make me symmetrical (much harder with a single implant) So I will, once the swelling goes down and things “settle” into their natural position, get a later lift on the right to match the newly lifted left. Also, the “reconstruction” material will come from another part of my anatomy and without getting into all the gory details, let me just say that there is a silver lining in this very cloudy picture: an ever so slight “tummy tuck” that will come with the package)
At this stage Steligo was truly a gold mine because she dealt not only with the technicalities of the procedures but – oh you know – those messy things called FEELINGS.
Clang! clang! clang!
Um, yeah. Feelings, gotta’ deal with ‘em.
Steligo was right on the money. She said one important thing that leapt off the page at me. She writes that if you have any doubts, to seek a second opinion. And goddamn did I have doubts! After days and sleepless nights agonizing over this, I finally aired my concerns with Dr. Brenin’s nurse practioner. I guessed that the surgeons’ nurses would surely know the scoop on each of the surgeons. I was right. Without casting aspersions on the plastic surgeon whom I had already seen (except for a long drawn out sigh and a comment to the effect – “well, it’s not the first time we’ve had people ask for the name of another surgeon.”) She immediately gave me the name of second plastic surgeon and I promptly called for an appointment with him.
Little did I know that both plastic surgeons practiced out of the same clinic at U.Va. and shared a pool of residents and support staff. Awwwwkward! But I stuck to my guns. I felt immediately more at ease when his secretary asked to make the appointment the last one of the day because “Dr. Drake likes to spend extra time with his cancer patients so he can discuss all the options and what to expect.” To my relief, Dr. Drake, showed up righ on time, sat down in no hurry, graciously and indeed thoroughly, answered all my questions and concerns. He shared an album of his previous handiwork – the good, the not so good and the downright ugly - discussing each of the various reconstructive options. In detail. He even drew diagrams – one of them ON me - and reviewed the various advantages and risks. Then he quietly rose, shook my hand and politely wished me luck.
Clang! Clang! Clang! The loud voice in my head: NO! Wait! Aren’t you going to do it Dr. Drake??
That’s apparently not how it works. A second opinion is just that, an opinion. A consult. A chance to ask more questions. If you want the second surgeon to actually do the procedure, you have to explicitly ask them to do it - aloud. In your head doesn't count. I didn’t know that and found myself going down the elevator not sure what was supposed to happen next.
Clang! clang! clang! oy! the noise in my head these days….
With all the “homework” that I do why is there so very much that I do not understand about this process?
I DO know some things. I know what kind of procedure I want to have and that I am an eligible candidate for it. And I know that I want Dr. Drake, not the first plastic surgeon, to do it.What I don’t know is how I get Drake on the team. Is he available on the day Brenin and I have scheduled? What do I do next?
It took me another half day of confusion and uncertainty and then I did what I always do when I really need a straight answer and to get something done. I called Drake’s secretary.
Take it from me. Want something done? Call a secretary. You can label them whatever you like: administrative assistant, executive assistant, secretary, assistant, clerk, even the humble receptionist or even frickin’ “Girl Friday” I don’t care – they are all the same. They run the world. And they can save your ass. They know everything and everyone. The manage calendars. They know where the skeletons are buried, and the keys are hidden. They have all the phone numbers, they know the OTHER assistants. They get it done – whatever “it” may be.
Carla, Dr. Drake’s assistant, is one of these. She knew exactly why I was calling and made it easy. I said that I wanted to see if Dr. Drake was available to do my procedure and she said that I shouldn’t worry anymore about it. She assured me it happens all the time, the surgeons are used to it, but they won’t “poach” from each other until the patient explicitly says they want a different doctor. All I had to do was say I wanted Drake. I for sure did. She said that was fine. She would cancel all the upcoming appointments with the previous plastics guy, sync Drake and Brenin’s schedules, call them both and let them know about the change, reserve the operating theater and call me back with the details. And she did it all.
One more visit to Drake’s office to sign the consent forms and get the once over from one of Drake's residents and to confirm with Drake which procedure I wanted done and we’re on.
Yes we are on. December 23rd at University of Virginia Medical Center. I will have a single, radical mastectomy and undergo the major portion of reconstructive surgery at the same time. I have been told I am the only surgery scheduled on that day and will be on the table anywhere from 5-7 hours and in recovery for another one to two hours after that. I expect, since the surgery is very long and rather invasive (there’s a lot of micro-surgery required to re-connect blood supply for the reconstruction) that I will not be up to talking to anyone on the phone for at least a day or more. I will be an inpatient for anywhere from 5-7 days then more or less off my feet at home for another 1 to 2 weeks. After that, I’ll be on restricted activity (no lifting etc.) for another 4-6 weeks.
Yes, it means I will be in the hospital Christmas Eve and Christmas day. Most of you already know that I don’t celebrate Christmas so that is not a concern. Harder on Diane than me really.
I will probably have a laptop at the hospital so after a day or two of dopiness, I hope to be up on FB, email etc. pretty quickly. If you want to call, I would call patient information to see if I’m able to take calls first. Information about contacting U.Va Medical Center can be found here:
Since first hearing the word “cancer” back in June I’ve been on what seems to be a never ending emotional roller coaster with at least two full blown freak outs. More recently -for weeks and weeks now - my head has been exploding. From the moment Dr. Brenin first uttered the dreaded phrase, “full mastectomy,” and while researching exactly what it means – looking at the photographs and diagrams and considering the means of reconstruction and what that entails - until just a week or so ago - I have been on a crazy nightmare of uncertainty, dread, fear of the surgical process, scarring, pain, the damage to my body image (such as it is) the long recovery process and god knows what. The waiting, as always, has been excruciating. I still have a week to go. But I’m starting to calm down. I know what’s coming, I know what to expect. I trust my treatment team – all of them.
Nevertheless, I admit it, I am afraid. But I’m not afraid to ask for your help. Your thoughts, prayers, and positive healing energy. Its almost over. I have a few more things to get through then I hope to be able to get back to concentrating on castigating you on topics of politics, foreign policy, health care, torture, war, climate change, the economy, - you know – all the things that don’t seem to matter quite so much right now. Well, for a little bit longer anyway. Don’t you worry! I’ll come up swinging very soon.
Stay with me folks. I need you.