Now that I’m back home and resting comfortably in a recliner by the fire with my highly inspirational beagle Seamus nearby, I can perhaps report in more precisely on the medical stuff. I have been told on several occasions throughout this now month-long breast cancer journey that I am a “good” patient. Or that I did “great.” Or some such thing. That makes me laugh, and I’m sure it makes every member of my family laugh or at least go “Huh?” Of everyone in my family I am by far the most squeamish. My dad’s a doctor, my brother is a regional vice president of a medical equipment manufacturer, my sister is an OR nurse, and the rest have no trouble with gore. Me? I can’t even watch medical shows on TV or the fakest of the fake horror flicks, because I simply cannot see blood. And the thought of stitches about makes me pass out.
Despite this, it seems, I’ve been long trained to be a “good” patient. My father once took out stitches in my hand on the dining room table, to the delight of the other neighborhood children. And then there is the infamous childhood story when my family was on a cross-country motorhome trip and I fell off a ladder and broke my arm in South Dakota. We made it to Las Vegas, Nevada before my parents decided it was in fact broken. Here is the point where my father would like for me to mention that he did put my arm in a sling and even after we arrived back in California (what no hospitals in Nevada back then??) and the arm was examined, it still was only placed in a sling. No cast was necessary. I’m a good patient after all. Oh, and my mother would like me to point out that she knew it was broken in South Dakota. I just don’t know why that’s better?! I’d just like to point out that there are three states between South Dakota and Nevada. Big states. And we were driving. So yeah. I’m a good patient; I don’t complain much. I also don’t cry a lot. I have yet to cry over this whole cancer thing–except the night of the actual diagnosis, but that was because as I was telling Chris the diagnosis his sister called to tell him the family dog had to be put down that evening (RIP Chloe!). Now that made me cry. (And no, Chris did not say “Oh yeah? well Teresa has cancer!” We waited a respectable five or six days). And the surprising thing is, I’m getting less squeamish as time goes on with this. I’m finding the medical aspects sort of fascinating. So for those of you who might actually be more squeamish than me, you may want to skip over this. And I’ll break this up into the various stages/ procedures so you can just skip to the good parts, however you determine “good.”
On December 23, 2008 my primary care doctor calls and says “highly suspicious of malignancy.” And he wants the lump out. Not just a biopsy. Excise the lump. That feels a lot like “You have cancer,” but it isn’t. Because I still had hope (and a friend who was told “you have ovarian cancer” and she didn’t). My actual diagnosis day is January 12th. I messed up the poll–January 13th was my MRI day to see if it had spread any further, but actually Dr. Karam had called me on January 12th to tell me it was in fact cancer. And he confirms for me that’s the day considered my “diagnosis day.” So January 12, 2009 is the day that will live in infamy. My D-Day.
How does that feel? Well, I kept thinking about that folklore (science-lore?) that says if you throw a frog in a pot of boiling water it will jump out immediately, but if you set it in the water and slowly turn up the heat it will stay there even up to boiling (please don’t try this at home or anywhere else!!). The “highly suspicous” conversation was like being thrown into the boiling water–all I wanted to do was jump out. Instead, I talked to a few people, I went about my regular life (I didn’t tell anyone so as not to ruin anybody’s holidays and to keep my mind off things) and then had a doctor’s appointment with a calm doctor who said “you don’t know it’s malignant until you have the biopsy.” So I got out of the pot in a manner of speaking. Let me also mention here that if you ever feel a lump or have a suspcious mammogram and they are telling you “85% of these turn out to be nothing”–they are probably right. I’ve heard that experience from lots of women and lots of men who were trying to calm me (or themselves) about the situation. Trust me though, I never heard that from any medical personnel dealing with me during this time. I could tell to a person, from absolutely everyone’s reaction (from the PA who first saw me, to mammogram technician, the ultrasound technician, my primary care physician, the Riverside surgeon, and everyone one at UCLA–I think the parking attendant knew!) that they thought “cancer.” I got “95% chance this IS cancer.” Not the “85% are nothing” response. So if you get that one, you are not a frog and there is no boiling water around.
Then there was the debacle of getting health care in Riverside over the holidays. Let me be clear here–the problem here may not be the quality of care, it’s quite simply that we don’t have enough doctors “out here.” And that’s just crazy. (Come on, UCR Medical Center!! Can’t arrive soon enough.) The earliest we could get a biopsy scheduled in Riverside was January 16th. Nearly a month after my first doctor’s appointment. That would have been a month of “highly suspcious” and “but you never know.” Carry on.
My nemesis became the ditzy Brenda from the surgeon’s office who was supposed to be scheduling my biopsy but couldn’t stop drinking eggnog long enough to read the “Stat” written on my file and kept forgetting to call me or the imaging place that was supposed to handle the biopsy. Oopsy.
That’s when it felt like I was back in the pot and the heat was being turned up. But in a good, albeit weird, way. When I was stuck in the Riverside health hell, my feeling was “oh hell no. Not cancer. I can not have cancer.” Then Stacey helped me find my way over to UCLA and Dr. Karam and my attitude moved to, “okay fine, it’s probably cancer, but no way am I having a masectomy.” And that becomes, “okay, well I can handle that. I can be Christina Applegate and her ‘I’ll have cute boobies in my 90′s’ attitude. But no chemo. I can’t handle chemo.” And eventually, as Dr. Good Karma slowly, politely, humorously (yes humorously), but quite clearly turned up the heat, it became “Okay, let’s just get on with this. I can handle whatever it is. The dog lived. And so will I.” I’ve come to think of the diagnosis process, lengthy though it is, as helpful to the mental adjustment. For me, anyway. So, keep that in mind as I explain, in what turned out to be this really, really lengthy blog posting, what one goes through to get the diagnosis of “Breast Cancer. Right breast, 10 o’clock.”
THE MANY TESTS (December 19, 2008 to January 5, 2009)
Let’s see…first it was a mammogram (Dec. 19th), of course (remember, I found the lump myself). That occured on a Friday. Then the following Monday (the 22nd) I went in for an ultrasound of the right breast. Yes, I watched the screen and yes, I was pretty sure it was cancer. Then I watched the face of the tech and yeah, you kinda know. They can’t say anything of course, but they can become a lot more solicitous. Then came the call from the doctor (the 23rd), then came a Christmas Eve spent trying to get a meeting with a surgeon scheduled in a town where clearly healthcare is closed for the holidays. Right, the folks at WalMart have to work but health care workes? Eh, call after the 1st of the year. I also had to drive over to the Breast Imaging Center to pick up my own “films” to take them to wherever my doctor might be able to get an appointment for me, whenever that might occur…because the films are old fashioned films and not on computer disk so that can’t simply be transferred by the click of a mouse.
Then we went to Christmas Eve dinner with Chris’s family. Of course we did. That’s usually a place that makes me quite nervous. But talk about perspective! I was fine. And I had wine. And not that Chris’s mom knew (although she is a breast cancer survivor herself) but she gave me a really beautiful, really comfortable mocha-colored wrap that is extremely soft and has been wrapped around me for much of the last month, and a little Coach purse that turns out to be the perfect size for the items I can have with me at the hospital (and perfect for Chris to be able to stash in the backpack he’s been carrying around for both of us).
Finally, on December 30th Chris and I went to meet with a surgeon in Corona. In a place that looked like Mother Teresa would have come to visit the dying there but no one else would or had since her passing. We almost bolted, but for the fear that we’d have to wait until 2011 for another appointment with another surgeon in Riverside. The surgeon was great. Very calming. And a woman (ruining forever Chris’s two-women fantasy when she did my breast exam; it’s just not what he had in mind at all. At all.). But alas, she turned me over to the heartless twit that was her scheduler and not remotely helpful. By January 5th (6 days and countless calls–mostly by me– later; not exactly “stat”) they had my biopsy scheduled for January 16th. The biopsy is what tells you whether you have cancer or not. You know, a month after you find the lump!My frustration turned to rage and I then turned to Stacey (who likes my rages and humors me and then helps me), who turned me to UCLA. But I do keep wondering–I’m self-employed, articulate, assertive and have several contacts in the medical field (yes, I used some of them); I could take the time and could afford to do a lot of the footwork myself and had friends who could and did help. What on earth do women who don’t have all of the above do???
THE BIOPSY (January 6 to 9)
Lunch with Stacey was January 6th. She had her UCLA doctor email me within an hour. Email! Within an hour! An actual doctor! No Brenda-bimbette involved! Stacey’s doctor (who had never so much as met me) not only referred me to the great and good Dr. Karam, but called and had them hold an appointment for two days later. I spent January 7th driving to no less than 5 different medical offices in Riverside (and one in Corona because the twit Brenda sent me to the wrong location first) picking up all of my various records to hand carry them to Dr. Karam. January 8th Chris and I drive to UCLA. Dr. Karam reviews my films (the July 23, 2008 mammogram showing nothing, and the December mammogram and ultrasound showing holy hell) and says “walks like a duck, quacks like a duck” and then immediately goes downstairs to radiology to try to get my biopsy scheduled ASAP. It’s scheduled for the next morning. ASAP/ Stat obviously mean different things in different counties.
As mentioned, the biopsy is how they can tell for certain whether it’s cancer. That morning (January 9) we arrived at 9:30 and they did another ultrasound. My radiologist was a resident by the name of Dr. Koo and she too was about oh, 19 years old? Dr. Karam stopped by and told me he was scheduling the MRI as well. If it turned out not to be cancer, we could cancel the MRI (and this makes so so much sense, but is not, I have learned, how things are done in Riverside). I did then finally say “you seem to only be talking about this being cancer; I assume you know already that it’s cancer.” And he said, “I”m 95% certain it’s cancer.” The radiologist could be heard letting her breath out. Clearly she also could tell it was cancer but couldn’t say anything. When Dr. Karam left, Dr. Koo launched into the “survival rates are really high when you catch it this early” routine. And thanks, but “survival”?? Honestly, it hadn’t occured to me that there was any other option!! I still refuse any other option. Oh and Dr. Koo said “Your doctor seems really young.” This still cracks me up! Hi pot? Meet Kettle.
The biopsy is an interesting procedure. Again though, I was well trained. You have to lay still for about 30 to 40 minutes while they insert a needle and a little thingy that was best described (for we older folks) as a “Pac Man” that goes in and extracts little chunks out of the tumor (3 to 5; naturally, they needed five from mine). My tumor, as we all know, was at 10 o’clock, and way on the side. Thus for the radiologist fellow Dr. Overstreet (another woman!) to get to it, I had to lay on my side but with my top half twisted back and my arm moved even further back. This is remarkably similar to the position one assumes for certain chiropractic adjustments….which I’ve been getting since I was oh, five or six years old. Now, the needle that goes into the breast to numb it for the biopsy…not a lot can train you for that. It stings. But then it goes away. So all in all, not too bad.
Post-biopsy they actually did another mammogram. And if you think a normal mammogram is painful, try it after Pac-Man has attacked your breast! Let’s just say there was bleeding. And while Dr. Koo bandaged me up again we had the Harvard (where she went) v. Princeton (where Chris went) discussion. UC Santa Barbara (where I went) wins!!! (hey, I’m the one with cancer). Then I was sent home with ice paks and steri-strips and all was well. I even stopped by the office, until they kicked me out. The bruise on my poor boobie lasted almost two weeks. But that was just the beginning of the blue period.
CANCER FOR REAL/ The MRI (January 12 and 13, 2009).
After “the call” where “it is what I thought it was” there really is a lot that goes on. Turns out there are all sorts of breast cancers and all sorts of factors that weigh into the treatment plan. My particular cancer is not, unfortunately, “in situ.” Meaning it isn’t just situated in the duct. And it’s got highly invasive tendencies. On the Bloom Richardson scale of 1 to 9 with 9 being the most invasive…mine’s a 9. (Not a time you want to be a 9!!). In fact, my pathology report (from the biopsy) says this about all the various factors:
Invasive ductal carcinoma, poorly differentiated
Modified Bloom and Richardson score 9 of 9 (I’m a chronic over-achiever!! that’s not on the report; that’s strictly gratuitous on my part)
Tubule formation: 3
Nuclear pleomorphism: 3
In-situ component: not identified
Lymphvascular invasion: not identified
Microcalcifications: not indentified
Breast biomarkers/FISH: pendingMost of that was good, well…except the whole cancer part. The bad ones were the 9 and later when the pending FISH came back. They look for cancers that are “hormone receptive”–if they are the patient can be treated with anti-hormone medication (granted, this medication goes on for five years, but it’s not chemo). My particular cancer was 0% receptive. 0%. Don’t waste your hormone medication on me! (I’m probably not supposed to be, but I’m kinda glad I won’t be taking medication for 5 years; chemo or not).
Next up was the MRI. This basically gives a good look at how large the tumor is and whether there are cancerous cells detected anywhere else–like in the lymph nodes. My MRI was January 13th and afterwards Chris and I went to dinner and met with our LA Writers Group. The MRI was, for me, not a big deal. Yeah, it’s difficult to lay still for that long and it’s a tight space and really loud, but for all the test does, it’s just not that bad. Unless you are claustrophobic and then, well, yeah. It’s gonna suck. I planned the blog during mine. My biggest issue was that the tech told me “no deep breaths. If you need to take a deep breath do it now. No deep breaths when you are in.” Which pretty much guaranteed that all I could think about was taking a deep breath!! Don’t think about purple. Stop it! No Purple. Do not picture the color purple. NO!! Purple is death!! Stop it!! (now let me know when you stop thinking about the color PURPLE. See, there you go again! Purple.).
By about 5pm that evening, Dr. Karam called to tell me the MRI was beautiful. No signs the cancer was anywhere other than where we already knew it was. But it was closer to 2cm than the 1.5 that had been earlier estimated.
THE TREATMENT PLAN (January 15, 2009)
This was basically a meeting with Dr. Karam to discuss his recommendations and “sign me up” for the lumpectomy. I think this is reasonably well detailed in an earlier post so we’ll just say, the heat is turning up but I’m still not jumping. Oh, and purple. Stop thinking about purple.
HEALTH CLEARANCE FOR SURGERY (January 20, 2009)
I had to return to Riverside healthcare to get a medical clearance for surgery from my primary care doctor on January 20th. I had to wait 4o minutes to get in and they asked me for the $20 co-pay. Neither of these things have occured at UCLA. I passed. All clear for surgery.
LAB RAT-NESS (The research study; January 27, 2009)
As I mentioned, I was asked to participate in a research study. Here’s the description of the study, straight from the materials they gave me:
“Between December 1997 and October 2008, a total of 98 subjects were enrolled in a study at UCLA examining patients with malignant and benign breast cancers, and healthy women. An additional 30 subjects will be enrolled at UCLA over the next year. This additional research has been funded by the US Army Medical Research and Material Command.”
[The army!! who knew! And I think I'm number 13 of the additional 30 they are trying for.]
“It is hoped that this investigation will result in a new technique to image benign and suspicious areas in the breast. This clinical research project is designed to learn if MR imaging/spectroscopy (MRI/MRS) is a reliable anatomical and biochemical tool for identifying breast cancers… The outcome of this study will help the researchers in developing a better diagnostic tool for breast cancer…”
I’m going to scan in and post the whole description, for those of you who are interested, because it’s really kind of fascinating. Basically, for those who get the “85% of these turn out to be benign” talk when a lump or spot on a mammogram is discovered, this MRI Spectroscopy may one day be the option instead of a biopsy. Much, much less invasive. No Pac Man. No bruising. Just time alone in a tube. For an hour. Okay, yeah, it got uncomfortable and I was pretty fidgety for the last 10 minutes. But the actual test “in the future” won’t be that long.
Scott and Sherrie (my physicists! the researchers) did tell us they were having a hard time getting volunteers for the research and they weren’t anywhere near the numbers the wanted for the “malignant tumor” test sample. And they did seem awfully thankful. Apparently, some women are upset with a cancer diagnosis (note to self: you are not normal!!) and can’t handle another doctor’s appointment or the timing is just too difficult to work out (you have to be a lab rat before your surgery of course). I can understand that. It just didn’t occur to me to say no. In fact, it helped to think I was helping science and future patients the night before my surgery. Kind of getting out of my own drama. And then of course many people can’t handle the MRI tube. And this time, I did notice how really small the space was. I tried to turn my head from one side to the next and hit the roof. Oops. But I”m glad I did it and I’m going to follow their research (or, I’m going to make my dad and my sister follow it, since I may not understand it!). I was after all, lucky lab rat #13.
That brings us up to surgery day and my trip to the surgery center, the nuclear medicine department, two hours of roaming the medical center while blue dye roamed my breast, back to the surgery center for pre-op check-in, back to nuclear medicine, back to the surgery center, into the operating room (or so I’m told), and finally the recovery room–which you’ve heard about. It was all about Roger. I think however this post is long enough. Nuclear medicine can wait. Probably until 3a.m this morning, since I can only sleep on my back and after a few hours my back begins to spasm. But I am not complaining! I’m a good patient. A really good patient. Oh, and have you stopped thinking about purple yet?