Saturday, May 30, 2009

I breastfed a plastic dinosaur

I’ve been careful about not getting undressed in front of Daniel lest he see his beloved ta-ta’s and be reminded to want them. We live in a small house with one bathroom so it’s not uncommon for the kids to see me in various stages of undress when I'm getting ready. Eventually that would change with my son, certainly…but not at age 2.

Things are different now.

Anyway, the other day I was discussing surgery techniques with Michael (what, like you don’t regularly have those kind of conversations?) and without thinking I lifted my shirt to show him on my actual breast. Daniel was like a magnet and suddenly right by my side, staring at my breast and smiling while he exclaimed, “Ta-ta!” like he had seen a long lost friend he thought had disappeared. I remained calm outwardly but inside I was already in anguish. I said as brightly as I could, “Yes, there’s Mama’s ta-ta, okay, Mama put her shirt down now,” to which he put his little hand up to stop me and said hopefully, “Have some, pease?” I had the awful, gut-wrenching task of saying no, and doing so as offhandedly as I could muster. I quickly tried to distract him and handed him a little toy dinosaur that was nearby.

Then he asked if the dinosaur could have ta-ta.

Before I could think of an answer he held the plastic creature to my nipple and joyfully smiled while it “nursed”. After that he wanted it to nurse off the other breast and by that time I was utterly powerless to refuse. A few moments later something grabbed his attention and I was able to stagger into the bedroom and cry my eyes out.

It’s taken me almost a week to be able to write about this and my keyboard is sopping wet now.

I think the process of gathering all this info, learning about my options and trying to make decisions has aided in distracting me at least somewhat from the reality of loss emanating from this whole thing. But eventually, and soon, my decision will be made. Of course then I’ll probably end up in a different flurry of activities to get ready…preparing things…cooking food ahead, planning schedules, getting organized.

But no matter how busy and engaged I am there are always these moments when it suddenly hits me again…Oh my God, I have cancer -- and my life, not to mention the lives of my little family, are now forever changed.

And this is only the beginning.

Wednesday, May 27, 2009

MRI showed more suspicious lesions...

So, the nurse from the hospital where I had my MRI called and said that unfortunately it showed further "suspicious lesions" in the affected breast. The good news is that my other breast was clear, so Lefty, as I've nicknamed her, gets to stay.

If I am still considering breast conservation (formerly known as a lumpectomy) then I need to have an ultra sound of these lesions. Assuming for moment they can find them on the u/s, it will immediately and definitively be clear if they are just cysts. If not, they still might be nothing but will have to be biopsied -- the same way my original lumps were, with a core needle procedure (numb the breast, u/s guided needle takes a piece for pathology).

Okay, now, let's say they can't find them using ultrasound, which does happen. Then I will need to do what's known as an MRI needle biopsy. It's more of an ordeal just by virtue of being slid in and out of an MRI machine a few times, but otherwise it's pretty much what it sounds like. If you want a great description check out this post at Brenda's Blog From Paraguay -- Brenda is a fabulous writer and describes her experience vividly.

Alternatively, during any of these procedures I can always say stop, let's just do a mastectomy and forget all this testing.

But I'm not going to do that -- even though I am now leaning more than ever towards having a mastectomy.


Well, because, if there is further cancer in my breast, especially if it's in a different area, then it's pretty clear breast conservation is no longer a viable option. Which ultimately means that the day I walk in to a hospital to have them remove my breast there will be no doubt whatsoever that I'm doing the right thing. Sure, I could assume I am choosing wisely just by there being something else suspicious in there, but that's not the same as knowing. Knowing might actually bring me more peace.

I could also find out it's completely nothing...but I may still be leaning towards mastectomy because of these MRI results.

Here's why:

Imagine if I chose breast conservation w/radiation and I got this same MRI result a couple years from now. I'd probably be kinda freaked. Still, the survival rate for breast conservation vs. mastectomy is the same -- reason being, if you get a recurrence after breast conservation you are SO carefully monitored they can find it early, and then they just go back and do a mastectomy. Again, let me stress -- long term survival for either lumpectomy w/radiation OR mastectomy are the same.

So, what's the problem then, some might say...why not keep your breast for now and worse case scenario you lose it later? Well, one problem is the cosmetic result doesn't always turn out as good once you have scars, asymmetry, and radiation damage, depending on individual circumstances. The other problem is some women could feel like they were living their life as if waiting for the other shoe to drop. Depends on the person, the unique cosmetic possibilities, and the individual importance applied to either.

I find myself thinking lately that when this is over I'd like it to be as over as possible...I mean, it will always be with me one way or the other, even if I never saw my reflection in the mirror I'd know it in my being. But the more often I can put this experience behind me, or at least to transcend and transform it, the better. Which decision will help me personally do that is what I am grappling with. My breast may just be letting me off the hook now and making the decision for me.

I'll have the ultra sound next week...then I'll take it one step at a time, but I will be taking each step available to me because I have to know. That's just how I am.

As I mentioned in my previous post I have some more docs to see, plastic surgeons, but will update asap. Heaps of love & gratitude...always & forever!

PS: It was one month ago today I was officially diagnosed with cancer.

Monday, May 25, 2009

Updates, shopping & gratitude


For every answer it seems I end up with 10 more questions.

The first plastic surgeon appointment was useful in that it opened up a whole new host of important considerations regarding surgical breast reconstruction processes and my thrombophillia...but in terms of answering my original inquiries it was less fruitful. I'm still no clearer on stuff like how breast conservation will look in my case and what nipple function potential there is, nor did I get satisfactory answers regarding nipple sparing if I go the mastectomy route.

Apparently the immediate breast reconstruction that I would typically have done after a skin sparing mastectomy is a bit more tricky because of my genetic clotting factors. This plastic surgeon, in fact, won't do the kind of reconstruction preferable because of it. I've read about special ways to monitor folks like me so I'm confident other doctors will and can. Oh, and just fyi, this isn't about a risk to my health at all, it's purely about a risk to the newly implanted tissue surviving -- worse case scenario is the new "stuffing" would fail and then would be removed --I'd then just have to use the less preferable saline implant.

I also had my MRI on Friday...since it's the holiday weekend I don't hold much hope for finding out answers before Wednesday. Alot is riding on this test, too. If there are questionable areas in my affected breast they will need further core needle biopsy...and if there are areas in my unaffected breast that will need to be biopsied too, of course. In the end if there is further cancer in my affected breast then a mastectomy is practically a given. If there is cancer in my presently unaffected breast...well, that's a whole 'nother can of worms. Oh, and fyi, the reason it has taken so long to have an MRI is that it's best done at a certain time in a woman's menstrual cycle.

So once again, it's the waiting game, biding time while anticipating test results.

Meanwhile I'm researching my little brains out so that the next plastic surgeon appointment is more productive. I'm also trying to get ready for all potentialities...and shopping is actually a big part of that...


I need certain post surgery clothes: First off, no over the head garments for a while with either surgical option, potentially longer for a mastectomy. Also, at first I'll need a larger size blouse/shirt to accommodate surgical breast and/or abdominal drains, special surgical bra and any swelling, etc. That's hopeful only for a few weeks at most, again, depending on my procedure(s). After that I'll just need my regular size but still nothing that goes on over the head.

So far I've hit Target and Sears, plus went to Lane Bryant as I am already sometimes an XL and there is no other size to go up to. I need uber comfy stuff to hang around the house recuperating in and then stuff that's decent to go for doctor visits or other necessary outings. And since it will be summer, it has to be warm weather clothing, too. I don't have enough yet, but I have a couple things to get me started. But with the exception of one blouse I would probably never have bought any of it if I didn't have these requirements, truth be told.


For anyone reading this who is or could be undergoing breast surgery in the near future, I found a great website: She is a fitness trainer and breast cancer survivor who designed active wear for women going through breast cancer treatment. The tops, especially, are VERY useful because they have movable pockets to place your cumbersome surgical drains in rather than trying to pin them to your shirt somehow. The material is also wicking, so good for summer wear and other treatment issues such as hot flashes for those going through chemo and/or hormone suppression.


Last but by NO means least...I know so many of you have sent me more emails -- bless you a thousand times. I do read every one, just like I read each and every comment here on my blog(s). The last few days have been hectic and now this week looks like more of the same. Trying to make the best decision is taking up all of my time, beyond what I ever could have even imagined. But please, please, please know that reaching out to me in any way and offering me support is SO important, it truly means the world to me and is a crucial part of how I am coping with all of this.

I don't know what I'd do without you, my dear friends. I'll tell you, if I won the lottery tomorrow I would throw the biggest after-treatment party ever envisioned and pay to fly every single one of you & your families all to some exotic location where we'd live it up in one great big celebration, just so I could really show you the depth of my gratitude!

:D Oh my, can you just imagine it, lol???

But in lieu of that, just know that each kind word and thought is sustaining my spirit and giving me strength for myself, and even more importantly so, for my whole little family.

Thank you, and much, much love to all....

Wednesday, May 20, 2009

Tit for Tat

Come on, I had to use that post title eventually ;)

Okay, so we have a tie! 2 surgeons say mastectomy, 2 say breast conservation and the 5th doc that was to be the hoped for tiebreaker says…drum roll please -- I can have either one!

By the time I got to the fifth (and last) oncological surgeon today I was already armed with lots of knowledge, a list of pertinent questions, and have become an old hand at the whole consult thing…and granted that may have been part of what made the visit go so smoothly. But I have to say I also liked her. She was friendly and easy to talk to and seemed to understand all my questions and not pass judgment on personal stuff like breastfeeding. She also was willing to give me objective data on my choices. She will do either surgery I want, with one caveat – she said “they” (and I’m assuming she means that hospital) will not do nipple sparing mastectomies -- something I have discovered in my research and want to know more about.

(Perhaps this post should have been titled, “How many times can Kayleigh use the word nipple?”)

See here’s how I see it in my ignorant laywoman’s mind:

Clearly one of my options is to have breast conservation that leaves me my own nipple essentially intact, perhaps with a significantly reduced breast size & deformed areola.

On the other side of the coin the kind of mastectomy I am a candidate for is what they call a skin sparing mastectomy, where they basically leave my entire breast intact on the outside and just take out all the bad stuff inside plus remove my nipple/areola. (what they put back in to make me a breast will be the subject of another post, but suffice is to say I might get a tummy tuck out of this deal!)

So then why can’t I have a nipple-sparing mastectomy as well, which seems to me to amount to the best of both those worlds? I mean, really…I just want my cancer gone, a normal sized breast, and my own nipple, which will hopefully still work, (and I mean in that special fun way)…is that so much to ask???

Okay, well, it may be, yes, lol. And to even have the possibility of asking questions like this is pretty freakin’ amazing considering a couple weeks ago I was vacillating between either planning my funeral in my head or imagining myself as some sort of one-breasted Amazon warrior.

But I digress.

In my research thus far the explanation for why they didn't do nipple-sparing mastectomies in the past was concern about microscopic cancer cells being present there since most cancer is ductal and all ducts lead to the nipple. The reason that isn’t a concern in breast conservation surgery is because they zap what’s left of your breast with radiation to kill those nasty little buggers just in case. However, with a mastectomy typically there’s no radiation, thus any stray little mutant cells left behind in a nipple could theoretically slip by and cause trouble later on.

But in recent years more and more nipple sparing mastectomies are being done because it's thought that the original concern over that area being more prone to cancer cells was exaggerated. Plus I've also read that they can actually zap the nipple & areola with radiation for a nipple sparing mastectomy just in case – and even can do so during the actually surgery!

In any case, clearly people are offering to leave me my nipple in breast conservation, so I need strong convincing arguments as to why not so with mastectomy before I can make my decision. I also feel like there are perhaps policies…formulas being used to determine what can and can’t be done rather than taking things on an individual health basis. The wheels of medical progress can move slow…I’m just trying not to get run over by them.


If I choose to keep my nipple I need to know what cosmetic realities I will have to accept for my breast in order to do so, and if I choose a mastectomy where my nipple is taken forever and replaced with a replicated facsimile I want to know that it wasn’t possible to save it.

So, my quest is not quite done yet.

I am seeing two plastic surgeons, one tomorrow and one next Thursday. I am hoping they can answer my questions about the final cosmetic outcome, complete with pictures of their previous work.

In the meantime I do feel pretty well armed with knowledge about my health prospects, which is what’s MOST important. My prognosis is good thus far so I try as much as I can to focus on that, especially for the sake of my little family.

Will update soon as I can…much love and great big fat gobs of gratitude to EVERYONE. Thanks for coming along on this journey, it would have been so much harder without each and every one of you :)

Monday, May 18, 2009

updates, schedule, treatment, decisions


As I mentioned last post I saw 3 more docs in two days. There was the surgeon from Sloan I already blogged about who said a mastectomy was IT. Then a highly regarded surgeon from NYU said breast conservation was easily possible (they don't call them lumpectomies anymore, fyi) though I found her a wee bit vague on things like final appearance and nipple function. When I asked about that she said, "Do you mean like reacting to cold?" Um, no, that's NOT what I mean. I can't possibly be the only woman to care about, you know, THAT, can I?

I'll try an blog in more detail about her another time, if only for my own memory's sake.

There was also a medical oncologist who was MOST helpful -- and lucky me she's at our local hospital, only 15 minutes away! I'll get to her later.

So, for anyone keeping score, here's the tally:

2 surgeons say mastectomy, Englewood NJ & Sloan Kettering NY
2 surgeons say breast conservation, both NYU but from different offices
2 medical oncologists say either way, not an issue cancer-wise, Englewood & local hospital


So, I'm seeing one more surgeon (yes, I'm thorough) -- this one is a woman from Hackensack, a well regarded hospital in NJ.

But I'm also adding two more docs to the line-up -- both plastic surgeons. The one is from NYU and another from Hackensack. Oh, and I also have an MRI this week.

Busy, busy, busy. Who knew cancer was so time consuming? I need a secretary.


So, medical oncologist from local hospital was really nice and knew her stuff, answered a ton of questions, made my situation MUCH clearer to me -- plus it all jived with what the first medical oncologist said. The only caveat is she, like most, didn't get the whole breastfeeding thing. ("Really, a two yr old? Gee, I barely lasted six weeks with my kids!) Whatever. Besides, since I also liked that other medical oncologist from Englewood, I can always double check them against eachother in terms of second opinions on post-op treatments.


Breast conservation with radiation or mastectomy without radiation. That's standard. Whether I have either surgery does not impact my need for chemo whatsoever. It's my sentinel nodes that essentially do that.

It seems that it is my decision in the end. Truly, the survival rates for both are the same with my cancer profile, despite various docs personal leanings. What will help me make my choice is knowing/understanding the possibilities of these four things about each option, in order of importance to me:

nipple function (for breast conservation only)
cosmetic appearance
future monitoring (more for breast conservation)

My thinking right now so far is that if I'm likely not to have nipple function and if recuperation is the same for each surgery then just take the whole thing...the skin sparing mastectomy pix I've seen look amazing, even the faux nipples look pretty good. But if there's any chance of my nipples working or if the recuperation is way more difficult with mastectomy....then I REALLY need to think some more.

As to chemotherapy:

If my sentinel nodes are clean (and they all keep saying they will be) then my tumor is sent to Oncotype. Oncotype does this genetic assessment of the tissue itself and comes up with a score. If I score low, then no chemo. Of course I'm assuming there's a borderline and heck, with my luck I'll hit it. So no matter what score I get I'll be looking for multiple opinions on my need for chemo, rest assured.

But wait, there's more!


I will need hormone suppression therapy of some kind since my cancer is estrogen receptor positive (ER+). The standard treatment for pre-menopausal women is Tamoxifen for 3-5 years. Problem is I can't take it, blood clot risk too high for me. So, the only option is Arimidex and what they call "ovarian ablation" -- in short, shutting down my ovaries. This can be done with a monthly injection or by removing them, known as an "oophorectomy".

I cannot help but feel in my gut that if I went the drastic route of oophorectomy and instant menopause then maybe I could forgo the Arimidex. Yet even when your ovaries are gone there's still estrogen in your body. Needless to say I need to do ALOT more research, but there's time for that after surgery....up to six months at least from what Sloan Kettering doc said.

The reason I would like to forgo the Arimidex and would consider oophorectomy is, yup, you guessed it -- nursing. I can't nurse on hormone suppression drugs. But if I had no need for chemo, and if I removed my ovaries and could skip/postpone hormone suppression drugs, then I could resume breastfeeding Daniel.

If I can't, I'll have to let go of that. It will be excruciating -- for me. Daniel is doing fine. Every once in a while he mentions it, but he doesn't seem's like he's just checking. I keep pumping...just in case. Giving that dream up totally will be hard and I will mourn. But I do know the proper perspective here. Unless my MRI shows something bad, unless my sentinel nodes are cancerous -- I GET TO LIVE!!!!

In the end, that there is no end yet, is what matters most.


So, there ya have it in a rather large nutshell. I'll be busy this week and will do my best to post. I've emailed some of you lovely people, long overdue I know...and I've got more to send out if you are one who hasn't heard a reply yet. Either way, know that my gratitude is deep and my love is strong.

Thank you!!!!

Thursday, May 14, 2009

I wish I knew more ways to say thank you...

(YAY! -- while I was writing this I found out I am BRCA negative!!!!!! I am so thankful, especially for my daughter. Can you hear the sigh of relief from here, lol???)

I've been on an odyssey the past day or so, three docs in two states. I'm exhausted. However I wanted to put something up here to let you all know I'm still going...still here. But mostly I wanted to say thank you. The comments on my last post were so supportive, so understanding -- I can't begin to tell you how much each of them meant to me.

In fact, all along this breast cancer journey I have been deeply struck by the heartfelt thoughtfulness of each remark...from frequent commentors that I have grown to consider friends, to lurkers coming out of the shadows, or people who just happened here from elsewhere.

And I want all of you to know that whether it be well wishes, support, advice, prayers or just has helped me...oh my, you have know idea how much...REALLY and TRULY you wonderful people have helped me get through what has no doubt been one of the hardest experiences of my entire life.

I am a better person for having read each and every word, for having known each and every one of you. Thank you is so small, but it's sent out to all of you in the HUGEST WAY POSSIBLE!

PS: Thought I should add -- I am still in decision mode, still gathering info. But to allay any concerns regarding time being of the essence: Several of the docs have let me know that approximately mid June would be the preferred deadline for a surgery to occur. The docs I am interested in having perform either type of surgery have assured me I have at least a couple weeks to officially book the date with them. Oh, and I am still awaiting an MRI, scheduled on the 20th, which is a crucial part of the pre-op decision puzzle.

Wednesday, May 13, 2009

Surgical oncologist #3 -- not all good news

(Note -- originally I wasn’t going to mention actual hospital names…privacy reasons or whatever. But once again I open the book of my life a little more, in case someone reading this ever needs this info -- eventually I'll come back and include actual doc names. I feel like I'm leaving a trail of breadcrumbs.)

I am very sad, and feel like I’ve been hit by a truck. I really like this doctor, I mean, she was by miles the best so far. And I might as well mention, she was also from Sloan Kettering, so there’s a reputation behind her too. She was warm, personable, and compassionate -- and more importantly seemed highly knowledgeable, thorough and distinctly well informed. That’s why what she told me made me so sad.

She said I need a mastectomy.

When pushed, when I asked her if she would refuse to do a lumpectomy/quandrantectomy on me as 2nd surgeon said he would, she said that she in fact would be unwilling to do it...she said it nicely, but she said it.

According to her, although the chances of survival are the same for lumpectomy, quadrantectomy and mastectomy, the chance of local reoccurrence would be 20% without a mastectomy. That means that the cancer could come back but that it would be confined to the same breast (btw, a chance of my other breast ever having cancer at some point in my life exists, but it’s like 10% or less).

Now, she said I could be vigilant, get my mammograms and other testing to catch a reoccurrence early, etc. But that because I am so young & pre-menopausal she would rather see me eliminate any odds of it coming back. She said, “You have young children, a nice husband and a good life, I want you to have a nice long time with all of that.”

She also feels that breastfeeding in a sense contributed to why my lumps are multiple and far apart. Let me be clear, breastfeeding didn't give me cancer, my body did that for unknown reasons. But that it did so during lactation has perhaps worked against me. Since my milk ducts are in effect “open” things may have been able to travel easier. I am dubious about that part since breastfeeding is supposed to protect you from cancer for almost the same reasons.

Anyway, she believes there is a good chance that in between these two lumps the duct may have more cancerous cells in situ, meaning still in the duct (not invasive like my lumps themselves are). Because of this she thinks that they’d have to take more than a quarter of my breast anyway. Oh, and in her opinion one of the tumors is close enough to my nipple that it would have to go in a quandrantectomy too. She was clear – a mastectomy is the way to go. I am a good candidate for a “skin sparing” one with reconstruction.

She agreed that I might not need chemo, but she couldn’t say definitively of course until the tumors are out and they do a sentinel node biopsy. She did say they are more likely to do chemo in younger, healthy women like me. Aren’t I lucky.

As to my lymph nodes…each and every doctor has felt me up quite thoroughly and none have found any swollen nodes. I knew this was good, but didn’t put much stock in it because it’s just a human hand, not a diagnostic test. But she said she is fairly confident that my nodes will be clear after biopsy – something that was GREAT to hear. That means the cancer wouldn’t have spread anywhere else in my body. It means I probably get to live a long time. I am trying really hard to embrace that as the main point here.

So to sum it up:

Surgeon #3 -- Sloan Kettering: Mastectomy, maybe chemo post-op, no radiation and she thinks my nodes will be clear and I’ll be BRCA negative (the genetic counselors think that too, btw). I like her. She said I could probably wait to do post surgery hormone treatments and breast feed for 6mos or so, assuming no chemo. (which I’ll post about another time, it’s not really ideal)

Surgeon #2 – New York Univ Hosp: Used the word Lumpectomy, didn’t address chemo other than to scoff at my pre-op question, didn’t think I’d need a plastic surgery consult even tho it would be a rather large “Lumpectomy” (though I would have gotten one anyway). Radiation was not definitive to my recollection. Didn’t like him much, didn’t hate him, but didn’t feel totally trustable.

Surgeon #3 – Englewood Hosp, NJ: Said chemo definitively, maybe pre-op, said Mastectomy definitively, wanted to dry up my breast milk with a drug that would be dangerous to me and was an all around jerk. NO WAY.

Medical oncologist #1 – Englewood Hosp, NJ: Agreed a lumpectomy of sorts could be possible, thou he’s not a surgeon…he said it would be more like a quandrantectomy. He said radiation without mastectomy, but maybe no chemo. I generally liked him.

I have one more medical oncologist appt already scheduled; it’s at my local hospital.

A couple wonderful people on a message board I frequent (the Weightwatchers Veggie Board aka VB) have given me some local doc names, we’ve been making phone calls.

Two out of three surgeons so far say Mastectomy. I should probably just face that, and maybe I will. But I can’t help feel in my gut that I need to hear it again from at least another doctor I trust before I quit trying to save my breast.

I feel less hopeful about avoiding an ordeal, and that scares me. In fact, I feel pretty damn down. I do feel grateful that my life seems so far not to be in imminent danger and am trying to focus on that. When I think of my kids that’s easy, it’s all there is. But when I look in the mirror…not so much. Someday my kids won’t be the sole focus of my life, I do know that somewhere in back of my present “mommy-brain”…so how will I feel about my body then, when it’s just me (and Michael)? This is the hardest thing I’ve ever had to decide. How do you do this??? Have I done enough to be able to figure this out?

PS: since completing the writing of this I have an appt TODAY with another doc at NYU hospital -- in fact I'm hitting publish and walking out the door. Will post again tomorow with news.

Love & gratitude beyond words to all....

Monday, May 11, 2009

First Medical Oncologist Appt -- update

Okay, this guy, I kinda liked, at least way better than the others so far (which I guess isn't really saying that much, is it, lol?) Oh, and I thought it was a woman but was mistaken.

Anyway, he explained things to me, didn’t mind my questions, and was at least remotely personable. He’s not a surgeon, but he would be the one directing my actual treatment and after care beyond surgery. And although not a surgeon, he certainly has enough experience to know what is likely possible surgically speaking.

Let’s start with my interest in doing that pre-operative chemo stuff. He says it’s not necessary or applicable in my case because as tumor size goes, mine aren’t colossal and therefore it wouldn't help conserve any more breast tissue by making them smaller. The amount of breast I lose has more to do with how far apart they are and what else they might find when they get in there. And since my tumors aren't being pesky and bothering any organs, there's no need to shrink them off of other tissue, either.

Ok, see, now THAT I understood. How hard was that to explain to me?

Now, as to that other reason one might want to do pre-op chemo, which is to see if a particular blend of chemo drugs works on murdering your specific tumor cells. Well, here’s where the guy TOTALLY blew my mind – depending on what they find out about my tumor I might not even need chemo!

Did you see that? It was my head spinning.

There are instances when the advantages from chemo are so minimal in early stage breast cancer (I am presently classified as Stage one based on what we know so far) that the detriments might out weigh the possible benefits, according to this doc.

Apparently there is some pathology lab assessment method thingy that they use to analyze the benefits of chemo***(see below for explanation) according to chance of reoccurrence in a specific individual, measured by percentages. In simple terms they plug in all the detailed info they have about your individual cancer and develop an assessment to come up with your treatment plan. We have some of the info already, but the last few key factors can only be gotten from the tumors themselves after they are out of me…frozen sections are tested up the wahzoo (how do you spell that?). Oh, and this isn’t something special this guy does, this is a standard practice to my understanding. (it is standard if you are node negative)

But the point here is this: depending on how aggressive this tumor looks under this type of analysis, and assuming my lymph nodes are clear (please be clear, please be clear) and still further assuming I am BRCA negative (please be neg, please be neg) and the MRI shows no other growths…and finally, assuming they get clear margins after whatever breast surgery I have…I would probably not need chemo therapy.

I know, that’s a lot of assumptions.

As to the surgery itself…like surgical oncologist #2 this medical oncologist thinks that a sort of lumpectomy could possibly be done instead of a full tilt mastectomy, which surgical oncologist # 1 said was mandatory/standard practice under my circumstances. But this guy thinks my surgery would probably end up being a little more like something in between a quandrantectomy and a lumpectomy.

Did you ever guess there were this many “ectomies” in breast surgery?

A quandrantectomy in my case spares the nipple (yay!) and basically you lose about ¼ of your breast…tho it might be less than that with mine, depending on some of the above test results and what they see when they get in there…maybe more like 1/5th. There are cosmetic things they can do to even you out, which I’ll need to research ASAP because they usually have to be done BEFORE radiation…oh, did I forget that? If I do not have a mastectomy I will absolutely need radiation. I think I can live with that, not a prob.

As to hormone therapy after all this…that’s the norm when you have estrogen receptive cancer. They want to suppress your estrogen production so the cancer has nothing to “eat”. If you are pre-menopausal, like me, you usually take something like tamoxifen for 3-5 yrs. If you are post-menopausal you take something like arimidex.

Here’s the problem: tamoxifen causes a big fat risk of blood clots to someone like me, as I’ve mentioned, I’m a thrombophilliac. It’s not advisable for me to use this drug, in his opinion. What would be my best bet would be to have my ovaries removed and go on the arimidex. Still a risk of blood clots, (I think?) but reduced enough that I wouldn’t need to take blood thinners beyond the aspirin therapy I already do (181 mgs/daily)

Okay, so to sum it up: maybe save a good part of my breast, maybe no chemo, but I lose my ovaries. I’m wrapping my mind around it still but it sounds kinda better than what I've heard so far, right? Now I just need the next docs to confirm this all so I know this guy isn't some renegade, lol.

Here’s the funny thing, funny being a relative term nowadays…if my nodes are clean, if I’m not BRCA positive, if I don’t need chemo and if get to keep a bit more than ¾ of my breast – I swear, I’d be the happiest freaking woman on the planet!!! I mean, you’d hear me laughing and whooping it up as if I won the lottery. Seriously. I’d be totally into having a major party, that’s how friggin fraggin happy I’d be.

I am a little afraid to hope, and yet there it is, tucked in the corner of Pandora’s little box.

If you’d asked me 2 months ago what would make me happy it would have been a whole different answer. But you know what? I kinda secretly suspect that whatever it would have been actually could not have made me nearly as happy as if my new dreams do come true. Happiness is different now. It’s just not the same…and in some ways it’s potentiality is actually stronger, deeper and maybe even better than before.

Who knew?

PS: tomorrow I see the third and final surgical oncologist appt, in NYC. Might not post until the next day. Wish me luck!

***this assessment is a 21-gene recurrence score assay commercially marketed as Oncotype DX™. It may be useful to select those women with ER-positive, node-negative early breast cancer who stand to benefit the most from chemotherapy. This test, which is performed by a pathologist on a breast tumor specimen, uses unique features of an individual woman's breast cancer (expression of 21 different genes) to estimate her risk of a cancer recurrence. If the recurrence score indicates that the patient is in a low-risk category, endocrine therapy alone may be sufficient. For women whose recurrence score puts them in a high-risk category, chemotherapy followed by endocrine therapy may provide a better outcome.

Sunday, May 10, 2009

To everyone on this day...

To all women who mother...and there are many different ways to be a mother, I wish you a happy, healthy and wonderful day!

And to all of the readers of this blog, male & female, who have certainly mothered me through this ordeal, I send you my deepest gratitude and blessings :)

Thursday, May 7, 2009

Mental health & Daniel

(Might not post here again till after the weekend -- doc appt tomorrow, will update Mon.)

Stress has been a major issue lately, for obvious reasons, and some that are not.

I had a very anxiety producing childhood and then some traumatic events, all combining to give me post-traumatic stress syndrome, intermittent anxiety and occasional panic attacks. I also once suffered a major depression that lasted about 10 years – undiagnosed and untreated, the end of which was when I gave birth to my precious Megan almost eight years ago.

We call those lost years "the decade I sat in a chair" because that’s pretty much what I did, sit around, self-medicating with food (thus once weighing 300 lbs). Thankfully that was before I had kids. Anyway, clearly I’ve come a long way. But now in the last month or so it felt like all of that was unwinding faster than I could grasp at the fragile threads.

So you can understand why I have a particular concern about cancer & my mental health status.

Naturally anyone would be freaking out about being diagnosed with a serious illness. How that would manifest might be slightly different from person to person, but certainly common reactions would be familiar to many. However in my case there could be additional issues that would heighten a typical or expected level of anxiety to potentially dangerous conditions, physically and/or mentally. That’s why I went running to a psychiatrist, pronto.

Physically I could feel a difference from the moment I found out, no doubt exacerbated by the month long build up of “not knowing” prior. Mere seconds after finding out I had breast cancer I went into an immediate and constant state of completely unrelenting physiological panic – fight or flight. I swear I could feel the adrenaline pumping through my body continuously; it was as if I were vibrating or pulsing. I felt shaky and weak yet I couldn’t stop moving, even if it were just to pace a little. I have very mild mitral valve prolapse and my heart seemed to be pounding harder than I’ve experienced ever before. I barely slept four hours a night total, and even that wasn’t uninterrupted. And the almost constant tears, from soft weeping to raging sobs with just a few moments of dry eyes in between has been draining – literally, I think I have been slightly dehydrated and my eyes and facial skin were radically effected by the salt.

Since Tuesday tho I can feel a discernable difference. Don’t get me wrong, I still feel scared out of my mind, still cry, still feel huge anxiety & depression, but it’s at an ever so slightly lower level physically speaking. The constant vibration is gone; the adrenaline rush is more sporadic and not continuous. My heart doesn’t pound and only occasionally races. I am crying what one might expect to be a reasonable amount…daily, several times, but not literally non-stop.

What changed since Tuesday? Three things.

Monday night I got my refill for Xanax from primary care doc and have been using it more liberally…like two pills during a 24 hr period instead of ½ only at night for sleep.

Sunday evening I began faking being happy around my son as much as I could. On Monday I had to really kick it up a notch, as I blogged about, because I was the only adult around for the entire day & night. I think there’s something to the whole “fake it till ya make it” idea…like it can tweak your brain chemistry a bit.

Most importantly -- Daniel and I have found our way back to each other. Michael thinks we were never really “apart” but it felt that way to me in my sensitive state.

Sadly & gladly he has stopped asking to nurse, tho he did ask me if my ta-ta was happy yesterday, which nearly sent me back over the edge. I told him Mama was happy because I loved him. He hugged me.

At night I’ve been able to comfort him back to sleep if he wakes, my biggest obstacle & concern…I just wrap my arms around him and rest his head on my pillow next to mine (have I mentioned we all co-sleep?) I have nursed him on a couple occasions in the middle of the night if he has woken...more because I wanted to, and since he is practically asleep he doesn’t seem to remember and it hasn’t spurred him on to ask for more at other times. To get him to fall asleep at bed time now I sing while holding & petting him, as he wraps his little arms around me and plays with my hair (note to self, got to get that industrial strength wig). I’m pumping some milk so I still keep up a small amount of supply. I just figured all the info on my situation isn’t in and I don’t want/can’t face giving up on nursing 100% forever completely, not just yet. (cue tears now).

That pretty much sums up where I am in my head at the moment.

Cancer-wise I believe that if my lymph nodes are clear and if I am BRCA negative I will have overcome a bunch of initial hurdles and could even feel more frequent moments that resemble something like what calm used to look like, only different. So that is what I am hoping for now. Thanks to all of you wonderful blessed people that are hoping right along with me.

Wednesday, May 6, 2009

Surgical Oncologist # 2 update --- part 2

Doc #2 took us into his office and shuffled through all my paperwork, read reports, asked some basic questions to get up to speed…then he said,

“Are you interested in saving your breast?”

I was immediately perplexed. First of all, was this some kind of trick question? Is anyone not interested in saving their breast? But aside from the ridiculous nature of how the question was posed, all of my research thus far indicates that when there are multiple lumps of invasive cancer there is really no choice – mastectomy. And trust me, I searched, and searched for opposition to that opinion. And how. Boy would I like to hear some opposition!

So in answer to his question I said, ”Well, I am most interested in living as long as possible, with or without breasts.”

He seemed annoyed at my answer and said that went without saying. I bit my tongue in replying that the answer to his question went without saying as well. Um, yes, if I could save my breast I would. Can I just say, “duh!”

So, I am dubious.

(Incidentally, back to Doc #1 for a moment -- you know, that anti-breastfeeding-definitive-mastectomy doc? He said that when I went to NYC they would no doubt tell me what I want to hear, that I could have a lumpectomy. He had no idea where in NYC we were going mind you, he was making an indictment of every single oncologist in the entire city! Now, clearly that man had inferiority issues as an NJ doc. I’ve seen this before, doctors here in the ‘burbs resent us inquiring and thorough types going over the bridge to the city because we think it’s better. But frankly, I don’t have time for bridge & tunnel ego crap now!)

Okay, so anyway, the other thing I don’t like about this Doc #2 is he was pretty dismissive about some treatment methods that I am particularly interested in understanding…but more so this treatment approach would especially make sense if one were trying to save their breast -- so you’d think he would be on top of it.

See, apparently in some cases the trend is to do chemo first, before lumpectomy/mastectomy. The essential reason for this is that even with all the qualifying we can do of cancers now, like that mine is invasive, estrogen receptive, HER2 negative, yada, yada, there are still clearly unknown and perhaps highly individual aspects to each person’s particular case of cancer.

Now, if you give chemo before removing the tumors you can literally see if a specific cocktail of drugs actually affects the tumor because it will shrink. So, not only do you know that this exact cancer is responding to the chosen treatment, but afterwards you get to take out less tumor and surrounding tissue. If one were trying to save a breast, the smaller the tumor the better, no? And even if one weren't, knowing a little more for sure that any stray cancer cells floating around your body don't like this set chemo drug would be good.

However, then there is the issue of the lymph nodes. See, if the cancer has spread to the nodes then it might have spread elsewhere. That’s why they remove some of them, called the sentinel nodes, to biopsy them. Traditionally they remove them during the lumpectomy/mastectomy. But what if we do chemo first? Let’s say that my nodes were cancerous but only just barely…and then I did this preoperative chemo and it shrunk my tumors…it might also nuke the barely detectable cancer cells in the nodes meaning I wouldn’t know the cancer had been there.

The solution is to do a sentinel node dissection first – go in, remove them and check for cancer. Then do the preoperative chemo, then the lumpectomy/mastectomy, then...whatever else. This is a newer standard treatement, not some whacko idea, mind you. But I also want to be clear here…this is my understanding from my own research. I want the doctors to disagree with me if I am incorrect, I'm not approaching this with an attitude of knowing anything.

So, when I raised the question of preoperative chemo with Doc #2 he was incredibly dismissive and acted like what I was asking about was useless and a waste of time, yet couldn’t/wouldn’t really explain why. I mean, it does make sense when you read about it and seems to be a prevalent method so why act like I’m being silly? Silly? For crying out loud, I’m the one with the cancer here, I have a right to know this stuff and asking isni't silly!!!

In my opinion what I have experienced are the two opposite ends of the spectrum regarding women’s breasts and cancer according to the typical male physician:

Doc # 1 thinks, lop it off, it’s just a breast and why would you ever want to actually use it for anything, certainly not breastfeeding – how weird a thing is that to do with a breast.

Doc # 2 thinks that to “disfigure” a woman would be so traumatic and de-feminizing that any chick in her right mind would be willing to risk whatever it took, even her life, to keep her precious boob.

Clearly I’m looking for sensible answers here and not getting any. I don’t like that these two men have been so trivializing of my questions and seem unwilling or unable to explain things to my satisfaction. I am a relatively intelligent person, I could understand what they had to tell me if they deemed it worthwhile to explain.

Not for nothing, but how would anyone without my advantages…supportive husband, good insurance and a decent intellect…be able to navigate any of this???

We have our last scheduled surgical appt Tuesday, Doc # 3…she (yes, I said she) will hopefully be better, maybe even “the one”. If not, I’m thinking there will at least be a Doc #4…perhaps even a # 5. In the meantime I also have an appt Friday with a medical oncologist, also a woman.

Still, I decided to have this doctor #2 order some tests. The BRCA test to see if there is a genetic issue, the PET scan was done to help see if the cancer has spread, and I have an MRI script too – unlike Doc #1 this guy thinks it's still worthwhile despite the fact that I’m lactating (oh troublesome me!) Even though I highly doubt this guy will be the doctor for me, I can always get all these results and take them elsewhere. I thought getting started on the tests was time conserving.

So, that’s the doctor portion of my update. I’ll post some more stuff tomorrow. I’m frankly exhausted...and frustrated. But strangely…still hopeful. Or maybe it's just the Xanax ;)

Bye for now, and thanks so much again (and again, and again, and a thousand times again) for being there.

Tuesday, May 5, 2009

Surgical Oncologist #2 -- part 1

We left for NYC at 8:30am and returned at 7:00pm, the longest we have ever been away from the kids. Mom said they were fine, but Daniel gave me the biggest hug when I got back and has been on me every since...something as many of you can imagine I am thrilled with beyond words. He really missed me. He also didn't ask to nurse, just wants hugs. Bittersweet relief.

This doctor is somewhat better than the first one, but I'm not sure he's "the one" either. We still have another sugeon appt next Tuesday, and this Friday we have our first medical oncologist appt as well.

Tomorrow, for something different, I have an appt w/a psychiatrist. I see a therapist regularly and have for about 3 years or so, mostly to deal with anxiety and management of my tinnitus. She's wonderful and I will keep seeing her. But she can't prescribe and I may need antidepressents or at least a more steady supply of Xanax. Usually a script for Xanax from my regular primary care doc (30 pills) lasts me almost two years. I went through 30 pills in barely more than a month since this cancer stuff started.

So, it may take me till tomorrow night to fill you in on today's appt. I will say that nothing earth shatteringly bad was added to my plate.

There was even a piece of good news. I am NOT Her2 positive, in simple terms this means the cancer, while invasive is not aggressive. This is a HUGE relief to me and the best possible result.

I also met with some VERY wonderful genetic counselors today who were especially kind-hearted and helpful...and blood was drawn for the BRCA tests (two weeks for results). This will show whether my children are at risk. Keep collective fingers crossed.

Finally, I had a PET scan today to see if the cancer has spread anywhere. It's not the only way they look at that, but it's good to get started on some more info gathering. And don't laugh, but the 45 minutes of IV and then subsequent 30 minutes inside the tube for the scan was the most relaxed I've been in weeks...I even snoozed!

Okay, I know it's not major details, but I'll get to that tomorrow, I promisse. Suffice is to say for now this docs take on thing is far different than doc #1, but I'm not sure that's all good...I'm a bit dubious.

I have a baby boy & little girl to go hug :D

Thank you for your support, dearest friends, especially the posts from yesterday which I now just read. You are making this process more bearable and I cannot express my gratitude enough.

Till tomorrow......

Monday, May 4, 2009

Faking it

I wish I was one of those valiant types that got all stoic and strong in the face of adversity. But I'm not. Today is my first day alone with the kids since I found out. Michael happened to be on vacation last week.

This is a hard day.

Incidentally, before I forget -- tomorrow I see surgeon number two, in NYC. If I don't post I'll be sure to on Weds.

Yesterday, for a little while, I was playing with Daniel and making him laugh and he looked at me with a big smile and said, "Mama happy." That is what he -- is what he needs. He needs me to be happy and calm, or at least to seem that way. If he is to lose so much he needs to at least see his same old Mama, that normal woman of barely more than a month ago.

It's not that my son has never seen me cry, he has and is typically very sweet. But the past month I've cried to varying degrees every day...several times a day. And since the 27th, since my diagnosis, well, I think I've been crying more of the time than not. His Daddy has been home since I found out, so Daniel has felt safe and turned to him. Which is good, truly, but heartbreaking for me...and thus more tears flow.

I also think that my hormones from the weaning process are out of whack...weaning can be a bit like post partum depression from what I've heard.

Anyway, yesterday Daniel was crying because he wanted to go outside but it was raining. I went to comfort him and he wouldn't come near me, he looked at me like he hated me and screamed at me when I asked if I could pick him up. He only wanted Daddy, even though it was actually Daddy that had said no. He wanted no part of me for hours. I crumpled and wept. I even begged him, yes, even tried to bribe him into coming and giving me a hug or sitting next to me. It was not my finest moment motherhood wise, I know. I so desperately needed to feel forgiven by him that I couldn't keep perspective.

I decided a little rain would hurt neither of us compared to the pain we both seemed to be in and so we went outside. He let me carry him because he didn't like the wet grass, let me hold his hand, and let me pick him a dandelion. Later in the day I put on a sock and started doing puppet antics and he giggled...that's when he said, "Mama happy" and it clicked.

Just how much crying is one very little boy supposed to empathise with? He needs me to be happy.

So now instead of coming in the back room here and there throughout the day to write, I come here to cry. Then I go back out and smile at him. Today I am pretending to be happy. I'm pretending my ass off. It is exhausting beyond belief, but it seems to be working. He is happier than I've seen him all week, and he sat on my lap and pet me and told me he loves my "booful hair".

Oh, and I'll be crazy gluing a wig to my head when mine falls out.

Saturday, May 2, 2009

This is as close to funny as I get now...

...and I ain't laughing.

This wasn’t supposed to happen.

You know why?

I’m a vegan. I mean, come on! Veg-an, it’s got “veg” in the freakin’ name for a reason people! I eat more vegetables than anyone I know and they’re supposed to protect me from this kinda crap. All the web sites and books that address cancer-fighting nutrition recommend a diet like what I already eat. Just how much kale is one woman supposed to consume???

I lost 130 lbs before I hit my forties. That’s a whole, albeit skinnier than me, person! I’m not obese. I’m supposed to be a roll model for clean living and this cancer shit is messing with my image…figuratively and literally.

I breastfed my first child. Hello, wasn’t that was supposed to protect me from this, too? That’s not why I did it, but still. She was a preemie who nursed every two hours for the first two years. Really.

I am breastfeeding my second child. Getting cancer while you are actually breastfeeding is supposed to be highly unlikely. Don’t even get me started. My eyes are going to dry up and roll out of my head from the salt in my tears.

I quit smoking. I mean, if it were lung cancer I could see it, I was 38 when I quit.

I rarely drink (till now, anyway, lol).

My mother’s cancer was supposed to be due to her ridiculous over use of HRT. We’re talking like over 15 years. She thought it made her look & feel young. You should see her now after the chemo and radiation. I would have just had a facelift and taken some vitamins.

Even though my mom has breast cancer she’s already 71 and has a really good prognosis for years to come. She got to have a lumpectomy too. And she’s single, celibate and a prude. I’m just sayin’.

Three out of four of my grandparents lived to be a very ripe old age with no diseases and they were an unhealthy bunch – the one that didn’t died after a series of strokes because of a genetic mutation called thrombophilia, but he didn’t know he had it because no one knew that kind of stuff back then. It was the dark ages, the 60’s, when I was a kid.

My dad is deceased, one year ago this month. He was 71. He died a thrombophilia related death, too, like his father. Coronary thrombosis, a heart attack. He knew he had the genetic predisposition, but chose to ignore it. He was a man who thought he knew everything. This time he was definitely wrong and I was totally right, I even have proof. Only I can’t tell him, cause he’s dead, that's the proof. Irony doesn't do it justice. Oh, and he was a really, really, REALLY mean father. He died peacefully in his sleep. With his new wife by his side, who inherited everything.

I do know I have thrombophilia so I can take care of myself, thereby beating the odds. I found that out by almost dying once, so haven't I already been there done that? At least close enough?

But even still, it was a blood clot that was supposed to get me in the end, not this. Oh, but wait, there's more -- risk of blood clots are highly increased when you have cancer.


I know.


Bitter, no, why do you ask?

Friday, May 1, 2009

My unfiltered thoughts

I cried the whole way home from the doctor yesterday. I raged, I wept, I mourned. I had intended to pump my “good” remaining breast and dump the poisonous milk throughout the chemo treatments or whatever, and when it was all done, many months from now, if Daniel wanted to he could return to nursing. Somehow the thought that I could offer him that, that this wasn’t Mama taking it away forever and ever, somehow that made the thought of all that comes next a little more bearable. He may by then be completely uninterested. But in the end it would be his choice and knowing I gave that back to him just would make me feel…well, it’s just hard to explain without weeping so hard I can’t type.

Anyway, if this doctor is right about the milk-making hormones and some effect on breast cancer, then my hopes are out of the question. I will double and triple check his opinion, as my gut tells me something is off about that.

It may seem strange to many of you, in the scheme of everything I am facing, to worry so much about nursing a toddler of 2.5, something clearly many women who are devoted breast-feeders don’t even do. He is certainly old enough to be weaned by most Western standards. I just don’t happen to subscribe to those standards (or very many other ones, actually, lol). Btw, did you know the average age of weaning worldwide is over five years old?

Besides, right now it’s about alot more than that.

To my son, I am a world…a world of suckling warmth, loving eye contact, stroking each other’s hair (“Mama, your hair so booful” as he pets mine, also soon to be gone)…I am the one that holds him on my chest while he rests, when he hurts he wants to nurse, when he’s tired he wants my breast to drift off to sleep. I cuddle with him in other ways, yes, but it is not the same, not physically, not emotionally, for him or me.

While I undergo all of this and am ill, deformed, bald, and weak, I can still be there for my Megan in many of the same ways I am today. I can talk to her about violin lessons and bugs, especially caterpillars (she’s crazy for tent worms, most people mistake them for Gypsy moths but Meggie knows the difference) she loves Meebas and her Petz5 computer game and certain TV shows and dogs -- any creatures really, she’s a true nature lover and very earth science-minded. I can still share all that with her while hairless, breastless and in between bouts of puking into a bowl if I have to. She’ll suffer some losses and I grieve for all of that too, oh so deeply. But it won’t compare to her baby brother.

To Daniel, to a toddler, Mama is different. Daniel is very bright, he’s very verbal for a child his age, but he is still only two. I am soft breasts and long hair and carrying him on my hip or crawling on the floor playing Thomas the Train. I will be able to offer none of that, perhaps for a long time, perhaps some of it gone forever. I am about to take myself away from him, piece by piece, bit by bit. To him it matters not why. Yes, someday he will understand how much I went through, how my heart broke, my very soul ached beyond a describable pain. But today, now, a huge part of who I am is leaving him. His world as he knows it is about to crumble and to him in some primal way, it will be me doing it.

Knowing this is tearing me apart more than I can stand. I look at him and weep. He keeps asking me, “Wass a matta Mama, you okay?” I am trying to prepare him, telling him that now Mama’s other ta-ta (his name for my breasts) is sick and that soon I can’t give him any more. I keep avoiding the circumstances when he used to like to nurse. Our morning routine has changed, afternoons when he's cranky I hide away...but bed times…that’s the one that I’ve yet to let go of. He says to me with the sweetest smile, “Now we ready ta-ta poh?” (poh is what he calls the pillow he lays on astride me)…he’s so happy to finally get what he wants, finally get that blissful bonding that just can’t be duplicated or replaced. I’m sorry I don’t mean to suggest non-breastfeeding moms don’t have that…I think if you never did nurse than you developed that bliss, that bond, in another way, I know that. But I have nursed, and this is our way and I’m so damn sad and angry and grief stricken that this is happening to my beautiful baby boy I can’t cry hard enough, scream loud enough, mourn deeply enough. It is beyond unfair.

I’m sorry. I have to stop.