... And The Beat Goes On...

I had decided before I left for my visit with the surgeon yesterday that my post here afterwards would be 'short & sweet'... I'm not sure this will be either?!  My mind has done 'flip flops' since this all started and when I woke up yesterday I was convinced that I had one more day surgery ahead of me (one lumpectomy and one excisional biopsy... both on my left breast)... then a few weeks of radiation... followed up by a couple of years of taking Tamoxifen... and Bob would be my Uncle... Turns out Bob isn't even remotely related to me... 

The good news remains that there was no Cancer found in my most recent biopsy.  And since the area in question has already been excised... there is nothing more to do on the right side at this time.  Other good news is that the incision is healing really well and I was told that even though it's still quite painful that there's  nothing to be concerned about.  Now if the rest of my body is still up for it... I can start Running again :)

  The bad news is... I have several strikes against me regarding my left breast: 

(1) I have DCIS  as well as ALH (in two opposite areas) 

(2) I cannot and will never be able to have an MRI for follow up (that means that if anything suspicious shows up on a mammogram in the future should I opt for the breast conserving surgery, I will once again be subjected to biopsies to study the area(s) 

(3) I have Cancer on both sides of my family (my Father's side is riddled with it) including Breast Cancer on both sides.  

(4) If I opted for conservation and there was reason to have the breast removed in the future, there is a high possibility I would no longer be a good candidate for reconstruction due to damage to skin cells from the radiation.  

Dr. Lee asked if I had gone to see the Geneticist and plastic surgeon she had recommended.  We spoke at length about the genetic testing and she strongly suggested I go to meet with Dr. Resta to learn more about the process and to find out if I would be a good candidate for the BRCA testing.  About the point in the conversation that she mentioned the possibility of having to have my Ovaries removed... I think my muddled brain went in to a conservation mode of its own.  But I do understand that the gene testing can help in answering some very difficult questions.  

I asked Dr. Lee to 'pretend this is your Sister you're talking to' and she replied by saying "I wouldn't tell my Sister she 'needed' to have a mastectomy... but I would tell her that I thought it was the best treatment in her case".  

  This morning things look different to me... though I'm doing my damnedest to try to keep a positive spin on all of this... It could certainly be worse... If You're still here to say it could be worse... that's enough proof to make it so...  And so the beat goes on... and I will arrange to meet the Geneticist and then the Plastic Surgeon... and we'll take things from there... 

  *The rest of this is mostly for Rebecca, my dear friend who regularly takes time from studying to be a doctor at Stanford... to check in to see how I'm doing* :)  Pathology reports so far... 

So far I have had 3 biopsies, 2 x stereotactic needle guided @ 12 and 6 o'clock on my left breast and one wire guided (3 wires) excisory on my right.

Right Breast = Breast Tissue:

- apocrine metaplasia and columnar cell change, cysts, focal florid usual type epithelial hyperplasia, nodular and sclerosing adenosis, and fibroadenosis;

-scattered foci of atypical lobular hyperplasia;

-microcalcifications associated with columnar cell change

-no evedince of DCIS or invasive carcinoma

 12 o'clock on Left Breast = Breast parenchyma with: 

- atypical lobular hyperplasia

- fibrosystic without atypia, columnar cell change without atypia, cyst formation, apocrine metaplasia, duct ectasia and sclerosing adenosis.  

- Targeted calcifications associated with complex sclerosing lesions, columnar cell change, benign epithelium, and atypical lobular hyperplasia (ALH in block designated "No calcifications").

- No evedince of in situ or infiltrating carcinoma.  

 6 o'clock Left Breast = stereotactic guided core biopsy:

-Ductal Carcinom in-situ identified, cribiform and solid types, intermediate to high nuclear grade with associated microcalcifications; no necrosis identified

-Adjecent foci of flat epithelial atypia (columnar cell hyperplasia with atypia) and atypical ductal hyperplasia focally with associated microcalcifications.   

-  No invasive carcinoma identified.

- Small benign intraductal papilloma with associated florid ductal epitelial hyperplasia of the usual type.

- remaining breast tissue showing fibrocystic changes wiht stromal fibrosis, adenosis, cysts, focal apocrine microcalcifications associated with benign breast epithelium (adenosis) noted.

- Additional Findings:

ER: 90% of tumor cells positive for DCIS

PR: 0% of tumor cells positive for DCIS

Full Circle!

  As some of you already know, I received an unexpected and very welcome call from my surgeon on Friday of last week.  I didn't hear my phone and she left a voicemail, the news was good news... but I wish I could have actually spoken to her to get more 'clear' information... I guess the clarity will come on the 24th when I have my follow up visit with her.  

  The message said... 'Nothing'... 'they found nothing in the samples they took in my most recent biopsies'!  By 'nothing' I'm not sure if that just means no Cancer... or really... nothing... as in not even any ALH as they'd found in my first biopsy?!  If it really is 'nothing'... I'm assuming that means that no further action is needed on my right breast at this time and that it will be closely monitored with Mammograms over the next months/years!?  This also means that in the past two monhts I've pretty much come 'full circle' and I'm right back where I was when I was supposed to feel fortunate that I only had DCIS!?  

*laughs... shaking her head... only slightly bewildered* !

  The other 'great news' is that the insurance company is finally covering some of my current medical bills!  I have no idea what they'll cover or how I figure any of this out... but at least it looks like they've lifted the dreaded 'pre-existing' status off of my account!  

  Seems now is about the time I pull up my bootstraps... kick myself in the butt and get back to life!  I'll have (I'm assuming) one more day surgery ahead of me in the near future for the biopsy on the AHL and the lumpectomy on the site where the DCIS was found (both on the left side) and now that things have taken a positive turn... I'll shoot for the stars and hope I don't even need radiation or medication!  

  I could probably make a list of 'things I've learned' since all this started... top of my list would be how I (and my fellow Canadian friends/family) should never take for granted the health care system provided across Canada.  I realize it varies from one province to another... but from where I'm sitting now... it all looks pretty good to me!  

This Post is Brought to You By...Percoset ;)

Before I get to my 'update'... I would like for any of you who wonder what this 'feels' like (psychologically ... not so much physically) ... to have to struggle with making decisions on how to choose a course of medical treatment for DCIS... Please read this Dana Farber Article 2002

Even though the article is over 6 years old... in my knowledge much remains the same today. This doesn't even factor in the financial quandary... *let's out huge breath* I promised David (and myself) today that I'm going to do my best to remove the $ from my thought process in making decisions regarding my future treatments for Breast Cancer.  

I patiently waited for today and was even what you could call 'chipper' as David & I made our way to Swedish-First Hill, in the darkness and rain at 5:30 this morning. We got parked, found the right building, checked in, got me changed into some fancy, XXL hospital gear, walked over to the Breast Center (with an escort)... and from the moment we sat down in the waiting room... things got a 'little weird' :| It was still quite early (about 6:45) and we were told by our 'escort' that someone would be expecting us. We could hear at least two people in another room in the offices... to me it sounded like it was a 'heated discussion'. We sat... looked at a great book of National Geographic 'wide angle photos'... joked about whether anyone actually knew we were there (I was already really glad that David was with me!).  

At 7:10 another couple came in, similar situation, the woman in fancy hospital gear... accompanied by her husband. Big difference was that someone came out and greeted them and asked if she had signed in?! She signed in and almost immediately, someone came out to escort her into another room, explaining to her husband that he couldn't accompany her and that she would be taken back to the pre-op waiting room in about half an hour. David & I just shrugged and went back to looking at the book. FINALLY... an odd (hmmm... quirky... imagine a slightly scary kindergarten teacher?) comes over with a clip board, gets me signed in and tells me that they're ready to start. 

I'm by no means writing this to make a 'mammogram' or any other medical procedure sound scary... but this was a bit of a circus! 'She'... it turns out is the technician and the 'Doctor' aka radiologist was equally as strange... the conversation between them was (in my opinion) inappropriate, unprofessional and to say the least made my experience with the two of them just that much more unpleasant. *And could someone please help me understand why, during such procedures, someone is always trying to 'keep you covered'?? Is this a 'modesty' issue?? Does it make sense to stop at nothing to keep my left breast covered with a hospital gown... to protect my privacy... when my right breast is either just sitting in the wide open or squished between a couple of plastic plates?*  

Picture this if you will... Me standing on my tiptoes because for some reason they had to have the machine at a level that was beyond my ability to have my heels on the floor, right arm stretched over the metal machine arm hand gripping the machine to keep steady, right breast pressed between the plates, head twisted about 50 degrees to the left with part of the machine digging in just behind my right ear... The Doctor is sitting at the control panel for the machine, looking at images and the technician is standing behind me... slightly to my right, felt marker in one hand and her left hand grappling to keep my left breast covered, her entire body pressed against mine... I'm really not sure why... but I came to think it was to comfort me :/ Trust me... it wasn't having the effect she was hoping for!  Somewhere around this point they started a conversation as though I wasn't there... saying to each other "Well, she's a much better patient than that woman yesterday... she just wasn't normal"... *shakes head* I just told myself to 'hang in there... be still and get this over with'!  

The doctor was telling her coordinates on my breast where she was to mark for him to insert the wires that would guide the surgeon in the Biopsy to the areas in question. There are measurements on a grid on the side of the machine plates and it turned out I would need not one wire inserted... but three. The radiologist says "first mark @ A - 10, second between B & C @ 9, third between D & E @ 9". The technician seemed frantic between trying to keep the light on on the machine (having to continue to press a button to turn a light on that seemed to be set on an auto off time function), pressing her body against mine, grappling with her left hand trying to keep my left breast covered and couldn't for the life of her get the coordinates straight!! She'd say "okay, okay, I think I have the first one @ A 10... and let's see... you said the next is between D & E on 10"? and they went back and forth with him resorting to saying Bravo Charlie... etc etc... AND it still took her another ??? 5 min to get it straight! He was getting agitated... I was wondering if I should ask to leave ... Finally I told her the coordinates!! No... sadly I'm not kidding!! Keep in mind this whole time I'm still on my tiptoes and my poor breast is still clamped in the machine!!  

I was in there with them for well over an hour and this continued for some time. I finally asked that the technician not press her body against mine, as she was making me very uncomfortable. I had to have several more images done after I had the three guide wires put in place... (THANK GOODNESS I had had a local anesthetic!!!) the blood on the clear plastic plates of the machine (and me) made the situation that much more unpleasant... At one point I actually piped up and questioned the need to keep me in place, pressed in the machine if they were unsure if the last image that was taken would work. The reply was in a whispered tone from the technician... who told me 'The doctor is a very, very smart man... we have to stay quiet and let him do his work... believe me, he knows exactly what he's doing'. The entire time the doctor was mumbling about how tiny the area was that he was trying to localize and how extremely difficult a case this was.  

I actually let a few tears slip out when I saw David's sweet face... I was so happy that he was there... and also very happy that I was SURE that would be the worst of my day... and it was. I told David later in the day that during the worst of the wire placement fiasco... I was breathing deeply, focusing on the wall in front of me and thinking about he and Gavin on the weekend... laughing uncontrollably and rolling around on the living room floor :)  

I was wheeled back over to the surgical wing with David following closely behind me and quietly stared out the window I reminded myself of how fortunate I am that this Cancer is not going to kill me. I really mean that! I thought about how lucky I am that I'm not having to deal with the fear of going through Chemotherapy... not having to worry if this is going to make me waste away to nothing...  

Thankfully the rest of the day was a very different story. Even the IV needle in the back of my hand went off without a hitch! The freezing was wearing off that I had for the wire insertion and it was becoming very apparent that the pain was going to be a lot worse than after the previous needle biopsies I had ... and I was very much looking forward to meeting my new friend... the Anesthesiologist!! :) David sat with me (so close one of the nurses had to smile and ask him to move to allow her room to get close to me :) and I looked through a Bon Appetit magazine... talking about things I'd like to try for Thanksgiving or Christmas... He fixed my drip on my IV when it got twisted up... I told him last week that I wonder if the 'reason' I was handed this Cancer was to make me realize how really 'good' he is and how much we really love each other... he said "No.. it's just something crappy" haha...  

The anesthesiologist came by and explained what he would be doing, the nurse came back and attached an antibiotic syringe to my IV bag saying "Dr. Lee always likes her patients to have this"... and finally Dr. Lee came and sat with us for a bit. She cleared up some things for us. The most important being that the 'samples' she would be taking today were as small as those extracted with the needle in the two previous biopsies I had done. We both were under the impression that she would be taking a larger section of tissue. I was quite concerned that this surgery would disfigure my breast but the scars will likely be nothing more than slight 'puckers' in the skin, as I have now on my left. The downside is that if there is any problems of any kind found in pathology... I will have to have further surgery on the right side, even if the 'problem' isn't Cancer. I was wrong in assuming that the area that I had biopsied today was the same as the first diagnosis on the left, which was ALH (which will have to be fully removed... one way or another). My assumption of course makes no sense upon reflection... they have never been able to get any tissue from the area... so how could there be any diagnosis?? In discussing this with my Mom earlier today, we agreed that the initial diagnosis of ALH pretty much slipped out of my mind and off the radar, when I got the second call telling me the second needle biopsy came back with DCIS.  

While speaking with Dr. Lee, I explained that I wasn't sure why I was there today... if it were up to me (which it actually is) I'd be going ahead and having a bilateral mastectomy with reconstruction... she looked at me quite blank faced and said 'If that's how you feel... we should have had this conversation before now'. I was a little weepy and said that I had made my decision... I just wasn't sure I trusted my own judgement or the reasons why I had come to the decision. We spoke a little about how difficult the emotional/psychological aspects were of this whole process and agreed that I was where I should be and that there would still be a lot of decisions to be made, based on what was found today. I told her the best advice I've had lately came from my brother Billy yesterday. He said "well you're smarter than most people... listen to your heart... not other people's opinions". Dr. Lee said her brother never said anything quite that kind to her... Thanks Bill :) I hoped that I would have some 'real news' regarding today's surgery by the end of this week... but Dr. lee made it quite clear that it would be most likely that I would be given all of the information in my follow up appointment with her on November 24th. She explained that she wanted to be the one to speak to me herself as she feels that this type of information (which could range from 'nothing to more ALH or more DCIS... or Bacchus forbid... something worse').  

So... More waiting... I plan to use the time wisely and find out as much as I can about pros and cons of radiation, possible effects of taking Tamoxifen for up to five years (just did a quick check on possible side effects: depression, lowered libido, blood clots, endrometrial Cancer) :| As well as the realities of mastectomies and choices for reconstruction. All the while... doing my best not to make the price tags a part of my thought process.  

On the subject of 'price tags'... the most recent communication I've had with the insurance company has sounded positive. Though the meeting that we had with the rep that deals with David's employer didn't seem to go anywhere, I have been contacted directly by the 'team lead' from the claims department of PacifiCare in PA. She has assured me that all major insurance companies in the US are aware that Canadians all have 'some type' of Federal Health Coverage; all she needed from me was a signed letter stating the 'begin and end' date of my coverage in BC. **The end date (as some of you know) is another 'crappy part'. When I contacted MSP (Medical Services Plan) of BC to cancel my insurance AFTER my coverage started here with David's plan, they told me I would be refunded all premiums paid back to the last time there had been a claim by a caregiver on the account. I thought it was great that I would be getting a $600.00 refund... little did I know that would make it appear on paper that my coverage had ended in the spring of 2007 (back to the date where they had refunded me).  

Most insurance companies (here in the US) will not cover a person who had a 'lapse in coverage', saying that the individual did not get medical treatment they needed because of having no insurance and kind of 'saved up' their illness to dump it on the coverer when they did get insurance. Because I have no 'official letter' from my previous insurance company, PacifiCare have been rejecting all claims thus far, from the initial Physical Exam and everything else thus far regarding my current health issues.** I carefully crafted a letter to PacifiCare stating "the begin date of my coverage with MSP of BC as April, 2000 and continued up until I canceled in April, 2008, after my coverage began with PacifiCare and when I felt it was appropriate to do so". Now I'll just wait and hope that will satisfy them. If it does and they cover me... perhaps all this will add up to us owing $40,000.00 instead of $200,000.00 (completely guessing at figures) and I'm reminding myself that if it goes that way I'll have to consider myself 'lucky'... I've already started seeking out organizations that assist in paying for medical bills.  

If this Breast Cancer isn't going to kill me... I see no reason to let it ruin our lives... :)

Lisa xo

What Do You Say To Someone With Cancer?

{Lunch at Lake Ann, North Cascades, WA}

... how about...

How was your weekend?

How about that Barack Obama?

How about those Seattle Seahawks? (well... *cringes* maybe not that :p )

I think in my last post I alluded to the fact that the next thing I was going to write here was going to be a 'rant' of some sort... or at least a 'steam blowing session'. Maybe the rant has passed, maybe it's just on hold... I'm pretty sure the latter is true.

I've been thinking a lot and talking to some people about how difficult it is (on both sides of the situation) to know 'what to say'. When the truth is, things don't really have to be much different than they were before as far as ongoing 'chit chat' goes. I certainly don't expect that every time I speak to someone that they have to 'inquire' on my physical/mental status regarding my Cancer. *Doesn't it suck when someone says the word CANCER out loud... or even in text!?* Nor do I want others to expect that I have to give them a full report every time we converse. It's just a FACT... a part of the picture... not the whole scene. (on second thought... maybe this is the rant... or one of them? :p )

I've had people coming out of the woodwork (no offence meant) and people that are usually around staying away (again, no offence) since I first got this diagnosis and though I find it odd, upon introspection... I guess I do the same. I tend to shy away from people in difficult situations and am guilty of contacting someone I know to have had (and successfully dealt with!) Breast Cancer recently, whom I had not contacted in ages... so I guess I've worn all the shoes myself. But this is the first time I've worn these shoes in particular. And having done so I now know... this is one of those things that you have 'NO IDEA' of until you are 100% in the shituation (no, that's not a typo!).

I've got people downplaying this saying "Well at least it's not Cancer-Cancer... it's only Cancer" and people upselling it acting like they are afraid I'm at Death's Door... in the meantime I feel like this is just a FACT... something that falls into the 'Life Happens' category and I have no alternative but to deal with it. I see this as neither trivial nor monumental (well... sometimes monumental) and realize that I will get through this... I will 'Live Through This' (I think that's what I'll call that book I'm going to write someday?!). It's not the end of this that's going to hurt... it's the getting through it.

At first I was always waiting for the day the 'other shoe would drop' and I'd know what's really going on. The day I'd have the information put before me and it would all become crystal clear what the treatment would be... now I'm not sure that day will ever come... or not any time soon anyhow. This all seems to be a series of this leads to that and changes this and wait and see what becomes of this to sort out what to do about that.

Right now I'm caught between wanting to take each and every step to know exactly what's going on and saying let's just cut to the chase and get to the cutting. I now fully, completely understand why some women, even with only gene testing and no testing that shows growth of specific Breast Cancer of any sort, to decide to go the route of the mastectomies. If they (I) decide to go the minimal route and opt for lumpectomy with radiation (if that's even going to be an option)... then there is always the chance of the same type of Cancer or a more invasive type in the same breast (or the other one) in the future (% of chance of having a future diagnosis of Breast Cancer down the road increases if you've ever had one). If you've had radiation and then later need to have a mastectomy... the chances of a successful reconstruction is reduced due to the damage done to the tissue (radiation burns/damages cells and after having treatments the skin doesn't stretch as it did before). Not to mention... how many surgeries do you want on one breast in one lifetime... especially when your breasts are as 'dainty' :) as mine?!

Left up to me (which in actuality it is)... I'd say let's do the whole thing right now bilateral mastectomy and take me down to a 2% chance of ever having another Breast Cancer (go figure, even with no breasts it can invade you!)... yet here I am awaiting a biopsy. Why, you ask... because I think that's what is what would seem like the rest of the world would expect me to do. To me it seems like if I decided on a more radical approach, I would seem ... well ... radical. Some days I wish the diagnosis was worse and that I was just being told what had to be done... instead of the one responsible for making all the decisions. I know... I should be thankful that things aren't any worse... in reality (rationally) I am very much so.

And the other reason I'd like to just get it all over with now and get it done for good... the taboo subject... $$!! Funny that it's so crass to talk about money and health in the same sentence; after all... your health is much more important than any amount of money. Well... currently the insurance company is rejecting every submission from any and all care givers I've seen thus far. Between August 13th when I had my first 'Full Physical Checkup' in the US and yesterday that had amassed to the tune of about $15,000.00 and I haven't even had a 'surgery' yet!! Every time there is a doctor visit (about $300.00 a pop) or a needle biopsy ($7,200.00) or an excisory biopsy ($I'm scared to even find out)... it all adds to the pile. David has scheduled a meeting with the rep from the insurance company on this coming Thursday morning and hopefully it will be decided that this is not a 'pre-existing' condition and at least 'some' of this will be covered... but still, it's all going to have to get paid for someday. All those 'collector item Pearl Jam posters'under the bed might come in handy for a 'virtual garage sale' someday soon!!

*I think my steam engine just ran out* :p

So... I don't know what you say to someone who has Cancer... but that's probably a full heaping helping of what someone with Cancer would like to be able to say to the world. Most days it's just business as usual, some days... when it's been a little while since there's been an doctor visit or a test or a statement in the mail... it almost feels like this isn't really happening at all. We just spent two days being dazzled by Mother Nature's landscaping skills in the North Cascades and I enjoyed one of the best weekends of my life. I know there's going to be some physical pain coming at me in the future... if I'm lucky, it won't be too bad... for some people it's not that bad at all and I'm pretty good at biting the bullet when I know it's going to be over at some time or other. For right now I feel physically fine and am taking advantage of it.

Anyhoo... the weekend was awesome! Obama is much less scary than McCain, I hope he gets into office and I wish I had the right to vote!! The Seahawks... um... ask David. On second thought... scratch that ;) Maybe my next entry will be called: 'What Do You Say To A Seahawks Fan'? :p

Happiness Is...

{A Day At Camp Long/Oct, 11, 08}

Perhaps it's my 'wake up call' with my health on the line that brings everything into such sharp focus sometime... but for whatever reason... I love the three people in the photo with me so much it hurts... In a good way of course! :)  If there are any of you reading this that put off having regular medical checkups (mammograms or otherwise) out of fear or neglect or any other reason... try looking at it as something not for yourself but of everyone that loves you.  It is your responsibility to do all you can to make sure you take care of yourself!  Someone out there needs you! :)

  I've got some other 'real feelings' bumbling around inside of me (which I will get to) but for the 'facts' of where things are now... 

  I finally got someone to talk to me regarding the next steps and have my wire localized excisional biopsy scheduled for 10:15 am, Nov, 11th.  It is a 'day surgery' with normal pre-op preparation; no food or liquids you can't see through after midnight (does White Wine count? ... just kidding!) ahh... next on the list is 'No Alcohol' ... that answers that!  Nothing at all ingested three hours prior to arrival time (which is scheduled for 6 am... so no problem there as I generally don't eat/drink in my sleep... at least I don't think I do?!)  After the biopsy is done, they will hang onto me for a couple of hours and since I will only have a local with sedative and not a general anesthesia, I hope that I'll feel okay!  (generals tend to make me feel really nauseous).  I'm glad it's on a Tuesday as the results usually take about three days to come back; if this the case we'll have them on Friday and I won't have to wait over the weekend.  

  All of the following steps will hinge on the results of this upcoming biopsy.  If it's negative for Cancer in my right breast then I'll call myself 'lucky' and follow the footsteps of Sheryl Crow, having a lumpectomy on the left (as well as an additional excisional biopsy for the second area of calcifications on the the left).  If it comes back positive... I'll still dig down and call myself 'lucky' *laughs at herself* ... well... let's just get through this part first!! :)  

  That's the 'update'... how I really feel to follow!

No Matter How Much I Try To Deny 'IT'...

I have Breast Cancer... :(

When I first started learning about DCIS, I was very confused to read women's stories, telling others that they felt 'wrong' about shedding tears and worrying themselves and their families so much over something that wasn't even really 'Cancer'.  They would talk about how some people referred to DCIS as a 'pre-cancer' or how they were told by a doctor or read somewhere on the Internet that it was a 'Cancer of sorts... but not one of the big bad ones' and they should feel lucky that was all they  had.  

I couldn't imagine how anyone could possibly be trying to deal with an illness and at the same time feel like it would be something they would have to make light of.  Over the past few weeks, I have come to understand first hand what these women were talking about and I have felt the pain and confusion.  I go from not wanting to tell anyone about this to wanting to tell people I don't even know.  When the checker at Safeway asks 'Would you like to donate a dollar to Breast Cancer research'? it almost seems as though she should be able to look into my eyes and see the answer.  

Today David & I met with the breast surgeon.  The first thing she said (after saying 'hello' to me and introducing herself to David) was... 'You may have heard some people wrongly refer to DCIS as a 'pre-cancer'.   It is a Cancer, it's not a type that's going to kill you ... but you have to do something about it.  We went over all that's happened so far, discussed the fact that I'm not now nor likely ever going to have an MRI so we have to go about gathering whatever information there is without one.  I thought today was going to be a day of 'answers' but it really just opened up more questions.  

One thing that was presented to us is the option of having genetic testing done to find out if I carry the BRCA1 or BRCA2 gene.  I still have lots to learn on the subject but from what I understand, knowing whether I carry one or both of the genes could help me decide what form of treatment to opt for.  IF I don't carry the genes... and IF the excisional biopsy (which I will be having soon on my right breast comes back as negative for Cancer)... then a lumpectomy on the Cancerous site on the left side and an additional excisional biopsy on the second site (where there are microcalcifications and have had a needle biopsy but no Cancer was found) would be done with follow up of radiation and possibly medication.  IF they can't get clear margins on the lumpectomy or IF they find additional DCIS in the left breast... then there would be no question as to whether I should have the left breast removed.  IF I have the genetic testing done and it comes back positive for either or both markers or if the biopsy on the right side comes back as positive for Cancer... then the conversation will move to a bilateral mastectomy.  

There are a lot of 'IFS' in my life right now and I've never been a big fan of 'IFS'.  One thing that was made very clear to me today is that I do have Breast Cancer.  I don't want it, am not sure how to deal with it but I know I have to.  I can't try to hide this and I certainly don't want to try to hide behind it.

So... sitting in front of me I have a folder filled with information on the biopsy I'll be having soon and contact information for a gene specialist and a couple of plastic surgeons.  I've already closed my eyes a few times and tried to wish it all away... but I just opened my eyes again and the pink folder with the ribbon is still staring me in the face... no matter how much I try to deny 'IT'...  this isn't just going to go away... 

This is Dr. Okorn... Lisa are you okay?

My phone rang at exactly 9 this morning.  The number showed as 'restricted', when I said 'hello' the voice on the other end said 'This is Dr. Okorn (my family doctor, whom I've seen once)... I've been looking through all of the reports that have been coming back since I saw you and I just wanted to call to make sure you are okay'.  We had a very nice conversation and I took her through pretty much all that's happened.  I was feeling like I was talking too much and that she probably didn't have time for 'chatter' ... then she'd ask me another question :)  She not only asked about the care I was receiving and if I fully understood all that was happening, but how I was handling all this emotionally... asked if I have someone I could talk to... asked if I was sleeping okay... eating enough.  She suggested I join Gilda's Club (created in memory of Gilda Radner) and I believe I will.  I know that the best way to feel understood in a situation is to connect with others who have been there.

Anyhow... where everything is now... I attempted to have an MRI done yesterday and after I'd changed into 'hospital gear' was met by the 'head honcho' who operates the machine.  He told me that after reviewing my medical history chart (which I had just filled out in the waiting room) that not only would I not be having an MRI (today or any day) but that he wouldn't even feel comfortable letting me into the room where the equipment is.  One of the questions on the sheet was 'Have you ever had a arterial clip'?  I checked it off of course, as I had brain surgery for an AVM when I was 15.  He explained that all clips such as these are now made of titanium, where in the past they used stainless steel.  Without knowing exactly what the clip is made from it is unsafe to put me in the machine.  Or as he so eloquently put it "I don't want us to be in the paper next week" :|  

*I'd like to elaborate for a moment on the interaction I had with this person* 

I fully understood his concern and of course agreed that it wouldn't be safe to have the procedure.  To put it in simple terms, the MRI is a gigantic magnet (apparently the one at Swedish is 'super duper'!) and if I have a metal clip on an artery in my brain which keeps it from rupturing... hence keeps me alive... The last thing I need to do is have it pulled off.  He explained in somewhat graphic detail what could have just happened had they done the MRI and then asked what my upcoming surgery was for.  When I told him 'Non Invasive Breast Cancer ~ DCIS'.  He said "oh, well, no big deal. Some people choose not to even have DCIS treated... they just ignore it."  He paused for a minute... thinking then said "On the other hand, my co-worker Anne just had a Bilateral Mastectomy done for DCIS" and shrugged.  Sometimes I'm glad it's 'me' that people say these things to... even though it's entirely inappropritate.... I think I have the ability to sort that out without letting it throw me for too much of a loop.  

*end of elaboration (aka RANT!)*

The closest I could come to finding information on what type of surgical procedures/equipment that would have been used in Eastern Canada in 1980 was to contact the Neurological Department at Dalhousie University.  I now have a good line of email communication going with someone there.  She has all of the information I could provide her and is actually going to be on site at the Children's Hospital this coming Monday.  She will fax any info she can find to my surgeon.  

So... that means that right now I'm kind of back at 'Square ? 2 maybe'?  I have an appointment scheduled to see Dr. Lee (surgeon) on Monday/Oct/6 and will at least get to find out where her thoughts are on all of this.  As I said to Dr. Okorn this morning My biggest fear right now is not knowing whether the surgeon is going to say "let's just do a lumpectomy and maybe follow up with rads & medication" or "let's whack everything off" :(  Dr. Okorn replied "I think it's going to be somewhere in between.  She's a great surgeon and a very good person and I think the two of you are going to have a lot of talking and decision making to do together".  

  Am I okay... ?  I don't know that there's an option? :)