Wednesday, February 25, 2009

BEST news yet

I do not have the cancer gene - my DNA is normal, no increased risk for cancer. Again - she rushed the test, I got the results in 7 days, these doctors rock.

Sunday, February 22, 2009

Only write in pencil when you are dealing with the cancer

I know it's been way too long since I updated, and I promised details on my chemo plan......I even have a draft saved that I was writing, I swear I was following thru! But before I could finish it and post it a curve ball was thrown my way - that might have changed everything. In hindsite, I see how incredibly flipped out I was about it - as much as I tried to stay calm, and march thru it like a good little cancer inflicted soldier.

When I met my new, wonderful breast surgeon, Dr. Euhus for the first time on Monday 2/9 I believe I mentioned how thorough he was, how much time he spent with us. I had had all of my medical/surgical records sent to him, and I brought with me my films from my original mammo/sono on 12/31 and the report that went with them. The next day, Tuesday morning, my cell rang and the voice on the phone was Dr. Euhus himself, which was a big disconcerting - as my Baylor docs rarely - make that never - called me themselves, always they had some underling nurse or assistant called me. Dr. Euhus said he had spent time reading all of my information, and had an issue. In the report on my original 12/31 imaging, the radiologist made note of 3 things, my tumor (now removed) the lymph node - which everyone has discussed is NBD - just a intra-breast lymph node - and a 3rd possible, small mass. There is no image of this 2nd mass - do I know anything about it?

Remembering quite clearly both of my unpleasant experiences at the Baylor Breast Imaging Center, my awful encounters with Dr. DeLeon, Baylor radiologist - I recounted this to him: A technician did my mammogram, verified the lump, then took me into the unltrasound room. She did along ultrasound, saying she thinks she sees 3 things, then goes to get the doctor. Dr. DeLeon comes in and does an even longer (nervewracking) ultrasound. He checks out my lump, then says the 2nd thing is a lymph node - then has to explain to me about the intra-breast lymph nodes that most people don't know exists - says it's NBD. Then he hunts around for the 3rd thing, asking the technician "where?" they confer, he searches - then says out loud "I really think that's a shadow". And that's it, no one EVER mentions a 3rd thing to me again. I come back and see Dr. DeLeon for the nightmare biopsy that turns out to be a failure. I have my initial consultation with Dr. Grant - my original surgeon, where we talk about my lump, the lymph node (he's not concerned with it either) what the surgery will entail. Then there's my surgery where the lump is removed, and pathology confirms he has gotten the "clean margins", meaning he got the cancer OUT, also the axillary dissection where he got 24 lymph nodes out - only one proven cancerous. Finally my post surgical appt with Dr. Grant - where he removed the drain and said I was to move on to an Oncologist for further treatment - SURGERY OVER.

Dr. Euhus says - well, the radiologist noted the 3rd mass in his report, but we have no pictures of it and it wasn't noted in your surgery and didn't show up in the pathology of your surgical excision......So my worry is, is there another small mass in your breast that hasn't been addressed? In an instance such as this - it's better to be safe.........So I'd like to do a breast MRI to make sure. I'm like, sure, of course, but SURELY it's nothing. SURELY if there was something else there one of them would have been damn sure to remove it during my surgery???? SO I'M REALLY NOT GOING TO WORRY. But schedule the test, you can add it to the other 50 tests I'm taking, absolutely. I tried to shove that to the back of my mind, as I went on that week to have a full body bone scan, CT, met Dr. Harker-Murray the oncologist and made my decision to move all of my care permanently to UT. Thinking back, I believe the fact of having it come out that there was yet ANOTHER problem with my care at Baylor, that mention of a 2nd mass in the report that was never addressed to me - certainly weighed in on my decision to go to UT, along with the exemplary care I felt I was now receiving from everyone there. Monday - Presidents day, to go along with the holiday theme of my breast cancer - I had the breast MRI & a heart scan. I hadn't had a breast MRI before, and it's quite the process. You lie face dawn on the bed-thing that moves into the machine, it has boob holes that they hang thru, and an IV is inserted in your arm. As a side note: the breast MRI technician at UT is Rita Clemons - and she's the sweetest, gentlest, friendly person. Anyhoo - she explains that when she moves me into the machine, she will then get it all calibrated and start taking pictures, then she will re-enter the room, turn on the IV for contrast, and do a 2nd set of pictures. It will take over 45 minutes and I cannot move even a smidge - or the whole thing starts over again. She went to great pains to make me comfy, getting me settled in using pads on my arms so they weren't straining during the long test, making sure I had no breathing obstruction with my nose area having a slat face down to breathe thru, covering me in a warm blanky. But with my herniated discs in my neck, and let's face it - even with the ear plugs it's very LOUD, by the time it was finally over my neck was screaming, I was dizzy and nauseated - just blech, def. the most uncomfortable test I had done. But it was over! I could move on.

Tuesday morning rolls around, I'm finishing up my blog post on the chemo, and chatting on the phone with my fellow cancer patient neighbor - when my cell rings, caller ID saying it's from UT. I tell my friend to hang on while I answer the other phone, thinking it's prolly someone confirming my genetic test scheduled for that today, but it's Dr. Euhus, himself' again....uh, oh. He's been reviewing my MRI films with the radiologist, and there's something THERE. It's next to the excision site, it could easily be scar tissue from the surgery, but it's about at the spot that Dr. DeLeon had noted the 2nd little mass, so that's concerning. Concerning, God I've learned to hate that word. He really feels he'd once again rather be safe he'd like me to come in for an ultrasound biopsy. ASAP. Just in case the ultrasound doesn't show it well enough, he'll book the MRI at the same time, and if they don't feel "comfortable" enough with the ultrasound guided biopsy, they'll do an MRI guided biopsy. I cannot imagine how THAT would work, but it sounds awfully unpleasant - but whatever! Of course I want it checked out, I'll do whatever he wants! He of course apologizes profusely that I have to go thru this - like it's his fault! My friend is on the other phone in my lap and hears the whole thing. She is devasted for me - and says I need anti-anxiety meds STAT, NOW. She's told me this before, remember she is several months ahead of me in treatment, she's said there always comes a point where you get to the end of your rope.....I've felt I was doing quite well so far, but this makes me feel like I'm just dying a little inside. Now my mind can race along imagining another cancer, another surgery, another infection, delaying chemo for another healing time, maybe we find a new and different kind of cancer? I am SICK with dread. And angry, anger is a feeling I can run with. I call the Baylor imaging center and ask for the person in charge. I tell her my story, full of outrage - does she understand that because of their error I am going thru this NOW? Yes, yes she does and she's going to investigate it and get back to me. Still riding the wave of anger, I dig thru my notes and find Dr. DeLeon's cell number. Back when my biopsy failed, and he knew how upset I was - he gave me his cell number so that I could call him back "anytime" with any more questions I had. I called him and he answered. He was not at work that day, he had the day off, but he listened to my story, recalled my case, asked me lots of questions, profusely apologized, and promised to call me the next morning when he got to work and could pull my file.

And he did, the next morning at 8:30am he called me. He said the 2nd mass was "questionable", and it was near enough to the primary tumor, that he thought it would automatically removed when the surgery was done. Had he talked to my surgeon prior to my surgery - you know, to make sure the 2nd mass was addressed? No, he did not talk to him, but that was "normal", he said he did his job by putting it in the report, that the surgeon would "of course" be reading before my surgery. He says he "stands by that", he is positive that if my tumor was removed with clean margins that the area he questions HAD to have been removed! He's profoundly sorry this is happening, he's glad that I've moved to UT since I had so very many problems with my care at Baylor, he feels I have done right by myself to find a place where I'm comfortable....blah blah blah. He asks if I would please stay in touch, please let him know what happens. He's such an earnest little shit on the phone, so yeah, sure - I'll call ya.

I forgot to mention, that on Tuesday after I got the call from Dr. Euhus, I had to race to UT to meet with the genetisist - about genetic testing for the BRACA gene. I was still a bit of a wreck as she took me to her office, I told her about what was happening, the 2nd mass, the MRI, the biopsy I was facing. As seems to be the rule around UT, she was amazingly sweet, understanding and compassionate. After I told my story and cried a bit, she launched in to her explanation of what the gene they were looking for was, what it meant, she asked lots o questions about my genetic heritage - which is full of mostly holes, not information. Both my grandmothers died young, my mom's mom in 1928 when my mom was 2, my dad's mom in around 1942 when he was 16. And I really don't know what killed them - the rest of my relatives are men - for 5 generations, nothing but boys. Here's a tidbit of info: in the general population 1 in 500 women has the gene, in the jewish population it's 1 in 40! I'm not jewish in any way - but in listing the many things I might be made of, one of them is a bit of cajun french. AHHA! Did I know all the Louisianna french are decended from jews? 100 families imigrated from France to Montreal, the Montreal to Louisianna - they were 100 jewish family's. Many that stayed around New Orleans turned Catholic, if they scattered to the country or Texas or Mississippi, they tended toward Southern Baptist - that would be us. Almost every one of the women in those 100 families had the BRACA gene. The gene gives you about a 50% of getting breast AND ovarian cancer. And that's forever - say I have the gene, and I've just had this breast cancer. I will continue to have a 50% chance of getting breast or ovarian cancer again and again - as long as I have breast tissue or ovarian tissue. So the recommendation if you have the gene is double mastectomy & full hystorectomy. Holy shit! And my triple negative tumor is the type of tumor women with the gene usually get. Of course! She really doubts I have the gene, but suggests I get the test anyway. So I do, they shipped my blood off that day - 2/17 - I should have the results in about 2 weeks. So on this day I have begun the wait for this genetic test, and my biopsy 2 days later, and then of course the wait for the results of THAT.

Let me add, that this week my son has been sick constantly - it started Sunday and it's lingered on and on. He's having an episode of his cyclic vomiting syndrome, and he hasn't had one that lasted this long in many years. His teachers, advisors, tutors are all - why do you think it is? Is he worried about school? You? His girlfriend problems? WHAT CAN WE DO??? I tell you, I'm getting it from all sides........ And he keeps throwing up, not keeping food down.

Thursday, the day of my biopsy starts. We begin the day with the boy feeling like crap, but dragging himself off to school. We have his annual ARD meeting that morning at 10am - he has special ed designation because of his illness, giving him extra time to make up assignments when he's sick & misses school, access to extra help from an advisor (his other mother) etc. This is also when we try and decide on his schedule for the next year, balancing his incredible smarts with not overloading him and stressing him out. This year I feel distracted and unprepared for this meeting (we've been having them for 7 years, so it's nothing new). He shows up at the meeting very sick, one look at him and you know. And he get's a bit emotional at the meeting, which almost breaks me. In my head I'm saying over and over "hold it together, hold it together...." Overall the meeting is fine, productive, and when it's over we bring him home - he's too sick to stay at school. And now we're running late - we race to UT to make my biopsy.

Because of my previous, horrible experience with a breast biopsy at Baylor, I'm booked to have todays biopsy with UT's head of radiology, Dr. Phil Evan's. I'm brought into the ultrasound room, and see a 3 screen computer monitor - on all 3 screens are an image of a breast - my breast - and like a little bright planet shines a little......something, small lump? My heart drops to my feet. The kindly nurse - Tootie, I shit you not - is bustling about, having me lie down, positioning me lying down takes my cape off my left side, then covers my nakedness with a drape - doesn't notice my shakiness while staring at the site of those computer screens. She leaves promising Dr. Evans will be there soon. I'm lying there thinking - I'm not going to meet another doctor for the 1st time while lying naked and prone. I sit up, cover myself up and wait. Dr. Evan's arrives and I'm able to stand and shake his hand, he seems like a gentle, soft spoken man. I ask him if he knows my story, hes says yes but asks me to go over it a bit with him. He reads my chart, I get back into position and he starts ultrasounding me. In the spot where the mystery mass should be. He says it all looks normal to him, there's scar tissue. He goes over the to 3 screen images of my MRI and starts scrolling thru them - he says nope, don't see a mass, just scar tissue. Then I see THE CAVE. There is a cavern in my breast! It's bigger than a golf ball and it's empty! He says no, it's full of fluid and that's normal. I'm telling you - it's bizarre. And big! He declares the surgical site inside me looks good, and there is no mass - but he comes back and continues ultrasounding. He gets to the bottom of my breast (the cave is at the top) and goes over and over one area. He says there is a change in tissue there, it looks like normal, fibrous change, if I wasn't who I was, there for what I'm there for, he would never give it a 2nd thought - but because I have my history and I'm there for a biopsy, he's going to biopsy this area of changed tissue at the bottom of my breast, ok? Well yeah, can't ignore it now - can we? They get out all the needles and stuff, inject a bunch of lidocaine, I feel the pressue of the push and then YEOW! The biopsy needle clicks when it fires and takes out a little bit of tissue inside and I FEEL IT. He's mortified, says I'm sorry! Your breasts are indeed very dense, I'm putting a lot more lidocaine in, you won't feel the next one! Too late! I've started melting down. He's going as fast as he can, and I don't "feel" the next 4 or 5 times the thing clicks, but it doesn't matter, because I've officially lost it. When he's done I manage to blubber out "now that you've done that, are you MORE suspicious?" He says adamently NO! I still think it's nothing! He felt awful, you could see it - but I couldnt stop myself, I'd lost control. He says he's so sorry it'll take two business days to get the results, which means over the weekend, I'll have to wait until Monday. I assure him I'm used to waiting over the weekend, it's always over a weekend. He pulls a little notepad out of his pocket and asks me for my cell number, which I give him. He tells Tootie that I need to see Dr. Euhus's nurse now, it's obvious he means for my hysteria - I need to be medicated! But instead Tootie takes me to the waiting room door and opens it - about a dozen seemingly happy, calm women sit in it wearing robes, waiting for thier tests. She says I must wait in there, I have to have a post biopsy mammogram. Is she kidding? I cannot stop crying, the women all look at me - they look a bit mortified - I head for one of the little dressing stalls with curtains, pull the curtain shut and just cry - I cannot stop. A few minutes later the curtain opens and this young woman is there "I just want to give you a hug! Can I hug you?" I yelp "NO! THANK YOU BUT NO!" Seriously, I'm living a nightmare here. Someone luckily calls my name and I'm taken into the mammo room. I'm able to hold my breath long enough for this women to get a few shots. It's over! But no, she tells me to go back to the waiting room and wait for the doctor to review the film, to see if she needs more shots. She leads me into the waiting room then disappears - I head to the dressing room where my clothes are, dress faster than you would think possible, and race the hell out of there. When I get to the big waiting area I shout for the hub - while pounding on the elevator button. He takes one look at me - What the hell?? I just say over and over, I have to get out of here. now. now. It's fine - we just have to leave! In the car I'm just a hot mess, I explain that I've just gone over the edge, I can't stop, take me to a hotel, I can't go home where the boy is! He needs to call UT and tell them we're gone, I'm sure they're looking for me.....He refuses to take me to a hotel, luckily at home the sick boy is asleep, he puts me in bed - we call UT, the head nurse says how fast can your husband get to the pharmacy? Quickly it turns out, and soon I'm on anti anxiety meds, the adrenalin of my first every panic/anxiety attack abates - and I sleep for a few hours. I now have huge respect for those folks out there living with an anxiety or panic disorder. It was truly a nightmare experience, I cannot imagine living with that on a regular basis. It's almost unthinkable, but I'm learning you can live with a lot more than you think you can.

The next day is Friday, I'm ok enough that morning to work, I stay busy all day, succeed in not thinking about all my pending test results quite a few times this day. Once again, I'm on the phone with a friend in the afternoon when I get another call - from a UT phone exchange. I knew, before I took the call I just knew it was Dr. Evans. I click over and say hello, and he says - very quickly, "Ms. Moore? This is Dr. Evans and I have great news! It was totally benign, I have all the results right here and it's totally nothing!" That sweet, sweet man had jumped thru hoops and gotten me those results in barely 24 hours because he knew how much it meant to me - what hell I would go thru over this weekend. And the minute he had them he called me - himself - to give me the good news. I never got results from Baylor in less than 5 days - and they never called me first, I always had to call them, and I never received results from a doctor - only nurses that could read the results, but not answer a question beyond that. Amazingly wonderful, once again, UT is for me.

So back to my original intent. I'm scheduled to start chemo on March 6 - a Friday. It seems pretty certain we're a go now, lord knows we've searched my boobs thoroughly, and they appear cancer free. I still owe you a detailed report of the plan, which I swear I will do soon. Today I'm happy, another crisis behind me. The boy has been well since Friday night, he's gotten to spend time with his favorite cousin - he's happy and doing his makeup work. We're breathing a little easier, all of us. The hub has gotten to indulge in his workaholic-ism this weekend as well. Our new normal is taking shape.

Friday, February 13, 2009

Doctor Shopping

Not as fun as say shoe shopping, or even grocery shopping, but quite necessary nonetheless. And I've been successful. I've decided to use the doc's real names, I'm just posting the facts and my personal perceptions & experiences after all. Maybe some poor woman here in Dallas is finding herself in the same place I was a few weeks ago, frantically googling doctor names trying to find out any shred of info. There should be a way to doctor shop more easily, to get more personal opinions - so here's my 2 cents, world - one woman's real life experience with breast cancer in Dallas, Texas. Criminy - I can go on Amy's List and get peoples opinions on plumbers or painters or pet sitters - but I can't find a place to find real life experiences & opinions on something as important as those that care for your health and well-being? Pshaw, we should start one. I'll start here.

I started my week meeting my friends breast surgeon, Dr. David Euhus, UT Southwestern - my first appt. at UT. From the get-go when I originally called UT to sign up for "second opinions" from their docs, the whole process with them has been amazingly pleasant. EVERYONE has a direct phone number, from nurse assistants to schedulers - real phone numbers, no voicemail morass nightmare. Appointments are scheduled quickly - and flexibly. Very,very,very different than Baylor. We had to wait for a while to see Dr. Euhus (pronounced oy-huse), but once he walked in the room it was like we were the only people he had to see for the rest of the day. He went over my records meticulously, asked loads of questions - listened to my answers, and gave me ton's of detailed answers to everything I asked. He went thru all of the clinical trials he could think of pertaining to my particular cancer and told us about some that might match me. He recommended a bunch of further testing, explaining in detail why he wanted to do each test. If I asked him a question he did not know the exact answer to he looked it up, he even left the room to study my images and returned with answers. Again - the opposite of my experience with Dr. Grant at Baylor. He also had a recommendation of what UT oncologist he wanted me to see, again explaining why she was his preference. Dr. Grant had said to me "you know you'll need to meet with an oncologist next." and I asked "who do you prefer, who is the best in your opinion?" to which he answered "we have 4 here at Baylor, they're all good." LAME answer. Am I supposed to tack their names to the wall and throw a dart? Are they all absolutely, 100% equal in skill and temperament? Their specialty and experience is all the same and tailored to my particular cancer? Baloney. Cop out, lazy, I-don't-give-a-rat's-ass-who-you-choose answer. I left Dr. Euhus feeling so much better taken care of, much relieved to have met him. I also left with a hug - as we were leaving his assistant ran up to us in the hallway and gave me a great big hug, said what a pleasure it was to meet us. When we got to the elevator the hub looked at me with a big grin on his face and said "I don't think anyone at Baylor is going to give us hugs." It's the little things.....

Today I had appointments scheduled with 2 oncologists, the one at UT Dr. Euhus recommended, and one my internist had recommended when Dr. Grant wussied out of a recommendation. First we went to UT to meet with Dr. Amy Harker-Murray, Oncologist specializing in breast cancer. She's 36, Canadian, went to medical school, residency & internship at the Mayo Medical School - The Mayo Clinic, in Michigan. She's married & has 2 kids 2 yrs & 6 mo's - in her bio it says "Her clinical practice emphasizes patient and family-centered care". So far so good, she's smart & realizes that cancer care is generally going to involve a family - boy howdy does it ever. I'd been digging the whole atmosphere and care at UT so far I was practically praying that she was "the one". I said practically, people - no jabs!

We really, really liked her. Once again, you would have thought she had no other people for the rest of the day. She went thru my records, asked lots of questions, went over the tests, explained the most tried and true chemo option for my particular tumor, relating to my relative young age & general good health, as well as a couple of clinical trials that I qualify for. She was very interested in our lives, how we live, my responsibilities & preferences, my wants and wishes. She wrote out very plainly stated descriptions of my treatment options, the clinical trials - she did not try and push any particular thing, she simply stated facts, upsides and downsides to everything. When asked she would state her preference for things with very detailed whys to each thing. Nothing she said or did sounded flip, condescending or biased. The hub & I were so enamored of her, we both agreed I should cancel the meeting with the oncologist at Baylor for that afternoon, and proceed with my treatment - all facets of it - at UT Southwestern, my team looks like this: Dr. David Euhus, breast surgeon; Dr. Amy Harker-Murray, hematology oncologist; Dr. Ann Spangler, radiation oncologist. They are testing the bejebus out of me - this is what I have done/am having done: Full body bone scan, CT of all my organs, Chest X-ray, MUGA scan (heart), Breast MRI, Pelvic ultrasound, genetic testing, insertion of porta-cath in my chest for blood draws & chemo. PHEW. I haven't even met my radiation doc, she'll prolly come up with some tests/procedures as well.

I'll post later about the schedule of my further treatment, we've pretty much made some solid decisions. Right now I'm going to get ready and go see Dr. Euhus this afternoon. Yesterday Dr. Harker-Murray said the CT showed fluid accumulation around my surgical sites, again. She examined me and said yep, it's there. It is uncomfortable, and could get's up to me whether to have it drained again or not. Last night I studied it, thought about how it's been feeling, what it is feeling like.......I think I want to just get it over with. It's Friday, & the way Murphy's Law has been working for me, if I ignore it, come Saturday night it'll probably blow up like a balloon and start burning up with fever again. I'm going to stick with the better safe than sorry plan for now. I was SO EXCITED to have a day with no doctors appts or tests. OH WELL. Shouldn't have gotten so excited, huh? All those cliche sayings about taking it "a day at a time" when you have a crisis like this are very true. If you think to the future too much, try and ponder the entire scope of it all, you will crash and burn with the overwhelming hugeness of it all. So - one day at a time........

Sunday, February 8, 2009

For Better or Worse

Not everyone is aware that both the Hub and I had previous young marriages. I met my 1st husband in Oct. of my senior year of high school when I was 17, Hub met his 1st wife in college. Shortly after I started dating my 1st, he introduced me to current hub - they were friends. We're talking 1980 - so we've been friends a long time. We both were married in 1985, I was 22 - he was 23. He & his first got intentionally pregnant on their honeymoon, having my stepedaughter 9 months later. They split in October of '87, when their daughter was just over a year old, thier split was mutually agreed on, and started out amicably enough. I left my ex in January of '88, much to his chagrin. He had issues that led to him getting abusive with me, so our split did not start amicable at all - beginning with me fleeing late at night with a hunk of my hair missing. The Hub & I had always been friends, always very fond of each other. Shortly after I met him I set him up with my BFF, and they dated for a few months. He's in my wedding pictures -my first wedding :) After our failed marriages we found ourselves in the same boat, at the same time and quickly got serious. When I remember our first year together the word enthralled comes to mind, but such an emotional roller coaster. As happy as we were together, the divorces were truly awful, mine went from contentious to amicable, his from amicable to contentious - all that pain, at the same time so delighted with each other. I will forever be grateful my 1st marriage yielded no kids, and just as grateful that his did. Not only did I get my beautiful, brilliant stepdaughter out of the deal, I got a window into the man her father is, the kind of father he is. No one ever thought I would have kids, and I don't think I would have if I hadn't had the guarantee that my child would have such a dad, that I would have a parenting partner like him.

We were seasoned divorcee's now, happy to be done with those ill-matched marriages - and found in each other truly compatable partners. We were together a year before we moved in together. Neither of us could think of a single reason to get married ever again, we could be together and committed without that treacherous legal certificate straining our bond! We were ever so careful, if we purchased something we announced to whom it would belong to when we split up. We would never fight over who get's this vase or that crystal bowl! A few years into our relationship we realized we were seriously co-mingling our belongings - his plant in my pot, my picture in his frame......this was getting complicated!

Years later Stephen was living in California, had been living there for 10 months, with me trying to decide what to do, flying back and forth. I sold my business, and headed out for a few weeks break, enjoying the late summer in beautiful Northern California, contemplating my future. Shortly after I returned home it became quite clear - I was pregnant. I booked a flight back right away - that's not news for the phone! We went to dinner at our favorite oceanside restaurant, I told him I was pregnant and he said "we should get married, I have amazing insurance." Get married we did, and we soon learned how amazing his insurance was when our little pumpkin was born 6 weeks early and spent a week in neonatal intensive care. $36,000.00 in medical bills and we didn't pay a dime. Right there our marriage had paid off in spades. That week in the hospital I was at that baby's side every 3 hours to feed him - and I'd been in labor for 3 looong days - so I was a bit of a mess. But the hub was right there with me, through every minute of my labor, my 3 1/2 hours of pushing - and while I kept vigil over that sick baby he watched over me. He gave me my meds, he made my sitz bath's and led me to them - and he hired a housekeeper while we were still in the hospital. I knew then, almost 16 years ago, that I had a real partner, unconditional devotion, love and care that came endlessly and always. I thought then that we had surely gone through the toughest of things, and in our own ways and as a couple we had shined.

And now this. From that first doctor's appointment for my doc to confirm, "yep, it's a lump - you need a mammogram" to scans, biopsy's, consultations, surgery, emergency doctor's visits - he's been right by my side. He's driven the kid everywhere, he's driven carpool, he's been to 3 pharmacies 10 times, he's cooked, cleaned, kept the dishes caught up and done laundry. He's cleaned and doctored my wounds, "stripped" the evil drain, bathed me, washed my hair, listened to me rant, rave & cry. He tells me to "stop that" when I start doing something I'm not ready for, makes me rest - absolutely anything and everything, I know will get done. I don't have to do anything at all and our world will still keep going round and round. We may have gotten married for the insurance, but what I really got from those I Do's is immeasurable and forever. I am grateful for so many things, nothing as much as having him by my side, til death do us part.

Tuesday, February 3, 2009


Haven't heard that from me in a while, have you? Preliminary pathology report shows:

at it's largest, the tumor was 2.2 cm - no bigger than we thought - not considered "big" in the breast tumor world

the sentinal node - that first one from the tumor - was the only one that had any involvement. They retrieved 24 nodes, 23 completely clear - the one node that tested positive for cancer had no "extranodule involvement", meaning it had not left the lymph node, the node was not in any way enlarged or changed - the area in it that showed to have cancer cells was 2 mm in size. That's millimeters and I'm assured that's as small as it sounds - FABULOUS news.

The pathologist saw nothing but clean margins meaning he saw nothing but healthy tissue around the piece of me they excised. Which indicates they got all the cancer out in this surgery. Which means NO MORE SURGERY FOR ME!

I have no fever, swelling is slowly getting better, output into the drain is getting lower - I could possibly qualify to get it out tomorrow, but I won't - my next appointment with the surgeon is Thursday afternoon, I am positive this drain is coming out then. I cannot wait, i will make me very happy.

I'll soon be meeting with oncologists, getting my pathology slides re-read by UT, etc., etc., Nothing can start until I'm all healed up from the surgery, 3 plus weeks. So for now - we'll just soak up this good news, I'm gonna exhale and focus on healing up my boo-boo's, do my stretching exercises, be a good girl. I can beat this, how can I not with such a wonderful tribe of friends and love ones!

Monday, February 2, 2009


A lot has happened since I posted Saturday morning. I was in lot's o pain on Saturday, it got progressively worse. I hovered around the boy while he got ready for the ball, to the point of him putting hand on hip and announcing to the hub and I "I can dress myself!" He looked so handsome, cowboy boots making him that much taller than I. So cute I can hardly stand it. The mom that was driving & his friend arrived - she and I proceeded to snap snap snap pictures, "Smile! Stand still! Quit goofing around, look this way!" The hub said "OMG, I'm having flashbacks of my mom doing this before prom." Some things never change. But I digress...

Right after they left, about 6:30pm I started feeling really, really bad. Dizzy, hot, sweaty. I took my temperature, it was 102. Un-oh. My brief post-op instructions said call if it's over 102. I took Advil, bundled up in the recliner - thought maybe I'd overdone with the pre-ball primping and excitement. I got one of my many reference books to read (10 Best Questions for Surviving Breast Cancer by Dede Bonner - very good book) Hub was looking like a caged beast by now, so he saw me settled in and went for a walk. I flipped to a section that said "Best Questions Before Breast Surgery" - yes, I'm reading this a bit late, but I hadn't read this book prior to surgery. It starts out with deciding which breast surgery is right for you, first options are under: Breast Conserving Surgery, of which there are 2: Lumpectomy and Partial Mastectomy. STOP RIGHT THERE! I was under the impression, from what my surgeon had told us, that these were the same thing! But oh no, they are not. When I had my one meeting with the breast surgeon we were discussing him removing the lump - obviously. Since we did not have a diagnosis due to the failed biopsy, we were only discussing taking out the lump, but he did ask me about my mastectomy vs lumpectomy feelings in the future, if it was cancer. He confirmed that lumpectomy w/treatment in most cases offeres the same survival & reoccurance rate as mastectomy w/treatment. I had said - if a mastectomy did not offer me an health advantage, I'd hang onto my breast. I remember - and the hub confirms he remembers as well, that I said "so we're doing a lumpectomy, removing the lump and trying to get clean margins around it?" He said yes - "but it's not called that until we have a cancer diagnosis". OK - whatever, lump removal by any name is a removed lump. At the surgery center on Friday they were having me sign the paperwork, and pushed a paper up saying I was consenting to "partial mastectomy, left breast". I said "WHOA! That sounds scary! Which caught hubs attention, so he leaned over and read it. I said "I guess that's what they call it, huh?" He said "I guess." Later, I was changed into the giant, awkward hospital gown, sitting in the pre-surgical area, hub's with me. Surgeon comes in and says "Any questions? I want to go over the different scenario's with you" Which he did, the #1 if it shows benign, #2 if it shows cancer (it was), he does sentinal node & it's benign, #3 if sentinal shows malignant as well (it did) and he proceeds with axillary disection (he did). He asked again, "any questions?" I said, "well, uh, it was really disconcerting when I signed off on a partial mastectomy!" He visibly puffed up at that and said "what does that mean to you?" in a really huffy tone. Oh-oh, don't want to piss off the man that's about to cut me up! So I said, in a joking fashion "It means you're going to rip a chunk out of my breast!" Oops, he looks even more huffy, and says "if that's what you think you shouldn't have signed it! I'm going to do exactly what we discussed!" Oh shit! I've waited 37 days to get here, and I've pissed off the surgeon! I made placating noises, hub made placating noises, we assured him I was ready for the surgery - duh - and off he went.
So back to Saturday night, with me miserable, fever ridden and in terrible pain from both of the incisions and the drain - and I'm reading this book. It explains that lumpectomy & partial mastectomy are two different things, totally. I was sure I'd had a lumpectomy, which is the removal of the lump, getting enough surrounding tissue to try and get "clean margins" around it. But I know I signed the paperwork for a partial mastectomy - and here's an explanation of what that is: "the cancer is removed with a segment of tissue down to and including the lining of the chest muscle below the location of the tumor". Whoa. That's a bigger deal surgery. That could be why I'm experiencing so much more "discomfort", or pain than the women I've spoken with that had lumpectomy's. I felt violated, I felt lied to. And I was sick, in pain with a high fever - bad combo. When hub came back from his walk he found me flipping out. He absolutely agrees - we were not informed at best - lied to at worst. This is not to say that I wouldn't have 100% agreed that the partial mastectomy was the way to go - I would probably have chosen it given the options, the point is I wasn't informed, I wasn't given options. At that point I'd gone over 24 hours without knowing what surgery had actually been done to me (rings bells to the night after my surgery when I didn't know what lymph node surgery I'd had, no?) And at this point, on Saturday night - I couldn't confirm what exactly had been done to me now, either. So I just miserably sat & cried my eyes out. I straightened up enough to put on a happy face when the boy returned from the ball after midnight, glowing with happiness. It was "awesome!" He had a wonderful time! How great is that? Pretty damn great. I then barely slept all night, lying in my recliner miserable with chills, hot flashes and sweats, every breath I took caused shooting pains from my wounds.

I got in bed about 5am Sunday morning. Woke up around 9:00am even more miserable than before. I cannot find my thermometer anywhere. No memory of where I'd had it last, hub had gone off to his office. I called 2 of my friends that live nearby - no answer, probably at church. Called the next door neighbor I know pretty well - no answer. Tried and tried to remember the name of my other next door neighbor......remember I'm not thinking all that clearly. Finally looked him up on by address - then found thier phone number on google - called him up "hey, I had surgery on Friday and I really need a thermometer....." He says sure, come on over! Ah, well - it's really kind of serious and I don't think I can make it down my front steps and across the yard.........That scared him, he dashes right over with it. 103.2 - bingo! - I get to call the doc. He actually calls me right back. He says "have you been stripping the drain?" what-ing the drain? I assure him, those words have never been spoken to us. To that he says - how quick can you meet me at my office? I confirmed with the hub, and my sister in law that was with us in the post-surgical area the entire time getting the after care instructions - NOTHING was said about "stripping" the drain.
At the doc's office he injects the surgical sights with lidocaine, then drain's about a pint and 1/2 of blood and fluid out of me. He then "strips" the drain - basically cleaning the tube that runs from me, to the collection container at the end - about 2 1/2 feet of tubing. It is indeed clogged with tissue along the entire length of it. I'm writhing on the table seeing nothing but the red mist of pain -luckily the hub pays close attention so he now knows what to do. A few hours after the mondo antiobiotics and fluid removal, I finally sleep for a few hours. Fever starts inching down, pain is receding - by midnight it was down to 100.4 - hub stripped the drain again successfully, I had another dose of antibiotics- I slept the entire night in my bed. This morning temp is down to 99.4. The pressure & swelling is down considerably, which means the pain is down as well.

While at the doc's I said "did you do a lumpectomy or a partial mastectomy?" He said "they're the same thing, the terms are interchangable". I said "I've been reading, and two of my books explain them as totally different things. So the books are wrong?" There were a few beats where there was silence, he was filling his syringes....then he said "well, yeah, pretty much." "Did you remove the lining of my chest muscles?" He said "of course!" I have to add, he was very, very conciliatory and nice on Sunday - not ever the authoritarian, huffy testy guy he was previously. He did not in any way take a "tone", he could see how grim and sick I was - he did not push his luck. I did not take this time to fully get into my grievances with him, once again I was in quite a compromising position, with him about to stick a humongous needle in me. Afterwards, when we left there I was practically incoherant. I have the whole thing recorded this time tho! There will be no more conversations with doctors that are not recorded in their entirety.

To recap: I did not have a lumpectomy, I had a partial mastectomy. I was not given a very key piece of my aftercare instructions, so I developed a raging infection that caused massive fluid retention, high fever and extraordinary pain. I got drained, am on strong antibiotics and am on the mend.

I've signed up to have a full 2nd opinion at UT Southwestern, and my internist gave me the name of her favorite oncologist at Baylor. My pathology should be in tomorrow. After Mr. current surgeon gives me his news on the report and whatever recommendations he has, I will have him send all my info to the Baylor oncologist, and tell him that I've also set up my second opinion at UT - I will be picking up my slides so that the UT pathologists can re-read them, I will meet with the UT breast surgeon to get his take on things, then I will meet with the oncologists at both Baylor & UT or their recommendations. Believe it or not - I feel better with all these appointments ahead of me. I feel much wiser, despite being much worse for wear. I've learned - I will keep plugging along until I am dealing with physicians that I believe in, I will listen to my gut, to my intuition and follow it. Period - no exception! I was talking to my sister in law today, she's been having some tests and will need some surgery. I asked her if she was happy with her doctors. She was like - well, yeah, pretty much.....I said "do you feel like they are brilliant?" That just popped in my head - but it's true, I want my doctors to reek brilliance. Just like I want the President to be the smartest man in the room - I want my doctor to be the smartest man in the hospital. That is my mission, and I have no choice but to accept it!