My Breast Surgeon is 'Stuck' in California...

and I'm sitting by a heater... watching the snow fly... again!

  Monday/Dec/22 was supposed to be the day that I would meet with Dr. Lee and initiate the plan to have my bilateral mastectomy and reconstruction with breast implants.   Three days before this, I sat and read through the 'Timeline For Expansions' given to me by the plastic surgeon.  I got about half way through and it struck me like a lead hammer... 'This is actually ME this is all happening to and this is going to go on for months'... I panicked!!  My brain screaming 'WE CAN'T HANDLE ALL THIS'!!!  I mean really... there must be some kind of a 'cap' or threshold on what people are supposed to be able to manage in any given period of time.  The past 14 months have had enough 'LIFE' in them... for any one couple... to have lasted 14 years! And this is just the beginning of this 'slice of life'!

  With the weather as it is and Seattle seeing the most snow/worst conditions in 10 years... public transit is a mess and I was getting ready to try to make my way to Cherry Hill on Monday morning, about 4 hours before my appointment at 3pm.  My head was a blur... I was thinking 'I'll tell her I've decided against the mastectomies... no reconstruction... no implants!  Let's just do the lumpectomy and biopsy the other area... no radiation... no drugs... no nothing.  I need to get this out of me and get back to living my life... get a job... be a productive part of this family... be 'myself' again.  Then my phone rang and I was informed that Dr. Lee was stuck in California due to weather in Seattle and wouldn't be able to see me until after the New Year.  

... 

... 

... 

*shakes head*

Okay, so I have a small nervous breakdown.  My sister Tanya tells me I should have at least one a day! 'Just hang a sign that says "Having Nervous Breakdown... Be Back When I'm Done", then let it all out, give yourself a kick in the butt and get back to looking after whatever needs to be looked after'.  Probably good advice, I'm sure the 'explosions' would be smaller if I had lots of them instead of saving them up for a 'Grand KaPow'.  

Yesterday I got a copy of the letter that Dr. Resta (the geneticist) sent to Dr. Lee with his findings on my BRCA testing.  In the letter he states that even though my results were 'normal' that with my current Cancer and my family history of Cancer that he feels it is the best course of action for me to have a mastectomy.  And again I'm reminded of the severity of the situation I'm in and that I need to do what is best for me medically... not just opt for the simplest procedure only to find myself back in a similar (or worse) situation in another year.  

I've decided that it's probably for the best that my appointment with Dr. Lee was canceled and I'm going to go 'HOME' and spend some time with my family... with my Mom.  Since my eyes well up with tears... just at typing that... I'm pretty sure it's an indication that I really need to go.  I guess there is no age limit on needing some 'Mom Time' :)

Tissue Transfers & Implants & Tattooed Nipples... Oh My!

  My friend Greg said to me a few weeks ago "I've never seen someone Blog an event so quickly"... referring to my posting about my biopsy, propped up in a comfy chair, doped up on percocet, just after we got home from the hospital.  Seems things have changed a little over the past few weeks and my rush to share my news has slowed to a crawl.  It's difficult to share something when you're really not sure what it is... or what to do with it... or who wants to hear it?! 

  There's no real 'bad news' ... well, not other than the fact that I have to deal with this at all and there's even some 'good news'.  Good news is that my genetic testing came back as 'normal' (I've always thought of 'normal' as a dryer setting!).  This means that my ovaries aren't of any concern to me now, which is a very welcome load off of my mind/plate.  Even more importantly,  this takes some pressure off of my siblings and their children.  It doesn't mean that they don't have the gene mutations... but my tests being normal takes off the glaring spotlight that it would have thrown on them had the results been different.  The whole concept of 'Genetic Testing' is just a quagmire of 'what if's and what fors'... I get that it does have a positive impact in some situations to have this information but for the most part, to me it just looks like it leads to more confusion.  

  Our first meeting with Dr. Wandra Miles (one of the Plastic Surgeons recommended by Dr. Lee, my Breast Surgeon) went well.  I'm very glad I've been doing lots of reading and educating myself on various types of reconstructive surgery, it certainly makes these conversations much easier to navigate and has us coming away feeling more confident and informed rather than overwhelmed and confused.  Before seeing her, I had decided (if possible) that I would opt for DIEP FLAP surgery, in hopes of using my own tissue and taking a more organic approach as well as eliminating the future necessity of surgeries to replace implants.  According to Dr. Miles I don't have the amount of excess tissue that would be needed to create new breasts so it looks like I will be getting implants.  There are lots of pros/cons on both sides  and if tissue transfer isn't in the stars for me... I'll have to make the most of what is.  

  The surgery itself will be skin sparing which means that they conserve all of the natural skin aside from the areola/nipple and original biopsy incision area.  (don't even ask about the areola/nipple conundrum... that seems down the road and far away to me right now... but if you're interested... Nipple & Areola Reconstruction .  And even more strange, many women opt for tattooing !  If I was going to get tattoos on my breasts... I think I'd get Daisies :)  but like I said... that's waaaaay down the road and my head is already full!  It's kind of interesting though.  When you think logically about how insignificant breast nipples are (unless you're planning to breast feed... it seems ridiculous that you'd go through surgery or tattooing to replace them?!  Here's an explanation of immediate reconstruction with tissue expanders (which is what I'm planning on doing) along with some photos that might make you think differently about 'breasts without nipples/areolas'?!

  One of the 'pros' of going with implants is that I won't have to deal with losing the loss of muscle in another area of my body.  When tissue/muscle are transferred from your abdomen, there is a risk of hernia as well as loss of core stability... I'd like to become a 'real runner' (or at least stick to a decent running regimen someday) so having my core muscles in tact is very important to me.  I got a very good 'vibe' from Dr. Miles as her primary concern (after ridding my body of Cancer) was to make sure that I understood the options to allow me to continue to enjoy activities that are important to me.... after I've had my surgery.  

  My next appointment is back with my breast surgeon, Dr. Lee on Monday/22nd.  This will be to let her know I've made my decisions on the type of procedure and reconstruction.  Since both surgeons work with patients on the same day, with the plastic surgeon coming in right after the mastectomy has been completed, everybody will have to be available on the same day.  They do this stuff everyday so I'm sure scheduling won't be an issue.  If it can happen... I'm looking at having the surgery in the first two weeks of January.  Talk about a way to start the New Year!  

  The insurance issues continue to daunt me.  Thankfully Susan (who looks after the insurance stuff for David's company) has been and continues to be very patient and helpful to me.  I think in the grand scheme of things this won't get to a point where it financially ruins us.  The onus will just remain on me to track all charges and make sure they are being processed properly.  If the information I've been getting is correct... after we satisfy the individual deductible of $2500.00 and pay the out of pocket cap of $3000.00... the insurance 'should' pay 100% of all 'eligible' expenses as long as the provider is 'in the network'.   That's great news for us... now if we can only make sure it actully works out that way!!

  And how am I? ... good question... calm & frantic... I think I spend so much time worrying about how I'm going to get back on track of being a productive part of society, that I spend little time worrying about possible complications with my surgeries.  Maybe this will be one of those things where I gain 'super-human strength' from going through all this crap and take life by the horns after this is done.   Sounds like a good scenario... you know... grey clouds and silver linings and all that jazz?!  :)

PS...  I'm considering David as an applicant for SaintHood!  We always knew we worked best as a couple under pressure.... but he's shown me a love and understanding that I had no idea was even possible.  David... ty :)

The 'Resta' The Story...

Notes from our visit with Dr. Robert Resta- Geneticist, Dec/04/08.

I still can't believe I'm saying/thinking this... but I have decided to have a bilateral mastectomy with breast reconstruction.  Dr. Resta, after having gone over my family history, agreed that this was a wise decision and the primary reason for my going ahead with the consultation with him today was not regarding the fate of my breasts, but to learn whether I should be concerned about future Ovarian Cancer and also to learn if my siblings should having genetic testing done.  

I'm very grateful to have spoken to Aunt Noreen this week who was able to give me the best information I could have to offer to the Geneticist today regarding our 'family medical history'.  

My $29.95 Sansa MP3 player paid for its worth by allowing me to use the 'voice recorder' to save the conversation we had today.  These are some of the pertinent points of information gained today.  

After asking me a litany of questions regarding my medical history and the history of my 1st & second degree relatives; he then asked and proceeded to check my hands mouth/tongue for signs of something called 'Cowden Syndrome', thankfully it's one of the things I don't have... and don't have to worry about!

He then went on to 'start at the beginning' of explaining stats/probabilities of Cancer:

* If you are born Female, in the US the lifetime risk that most women face is about 12%

* Of all of that Breast Cancer, 90% is NOT genetic

* What causes this 90%, no one knows

* At this time there are 6 specific genes that are known to be directly linked to Breast Cancer.  The most well know of these are BRCA1 & BRCA2 .  (I didn't gain any insight on the remaining 4, as Dr. Resta explained that since I did not show signs of Cowden Syndrome, which are apparently directly linked to these 'other 4', this wasn't necessarily a concern for me).  Yes... I'm confused too!!  

* We all have 2 each of the BCRA1 & BCRA2 genes, we all receive one of each from our Mother and Father.  It is 'mutations' in these specific genes that they look for.  

* In his experience, about 1:4 women with my history and having an 'early onset, diagnosed Breast Cancer' will test positive for a mutation in either the BCRA1 or BCRA2 genes, and that those numbers warrant my going ahead with the testing.  

* If I test positive my likelihood of developing a second Breast Cancer (not a recurrence of the one I'm dealing with now) would increase from 5% to 40 - 50%.  A possible, secondary Breast Cancer may not be as 'kind' as my current DCIS.  (I am more thankful every day that things aren't any worse than they are!)

* Another implication is my increased risk of Ovarian Cancer.  Average women have a 2% chance of Ovarian Cancer in their lifetime, a positive BRCA test increases the risk to 20 - 40%.  Since there is no current effective screening nor treatment for Ovarian Cancer, all women who test positive are strongly recommended to have their ovaries removed within 6 months of this finding.  

* Other concerns move on to my family members.  

* If I have a positive BRCA1 or BRCA2 my brother/sisters have a 50:50 chance of also being positive.  What this means would depend upon their gender and which gene (if either) showed the mutation.  BRCA1 has no particular risk for 'Male Cancers' but men can transmit it to their children.  If the 'parent' does NOT have the mutated gene and is not diagnosed with a Cancer, it would not be deemed necessary for their children to be tested.  

**** (A thought from Me) : What I understand all this to mean is... I am taking the responsibility on to be 'the first' in my family to have genetic testing done.  If I do not test positive for the mutation in these genes it does not mean that my siblings do not have the mutations and it would be up to them (with the knowledge of having the same family medical history as I do... and adding me as a 'sibling with Cancer') to decided whether they should be tested.  The reason for having the tests would not only to be aware if they were at increased risk of future Cancers... but also to know if their children should be tested. For instance, if a young woman (such as one of my nieces) has tested positive, her Breast Cancer screenings would begin at age 25, giving the opportunity to catch a Cancer in its earliest stages should she develop one. **** 

* If there is a  mutation in the BRCA2 gene this could effect the 'male' members of the family with higher likelihood of Male Breast Cancer (yes... sadly there is such a thing) and also higher likelihood of Prostate Cancer.  

 * If my sister is tested and is positive for the BCRA1 mutation that would mean that she has a 70% likelihood of developing a Breast Cancer in her lifetime and it would be recommended she have her ovaries removed.  Her Breast Cancer screening would elevate from just regular, annual Mammograms to MRI Breast Screening.  It would also mean that her children should be tested and if found to have mutations, should undergo additional, regular Cancer screenings.  

  Dr. Resta was also very thorough in detailing how the various insurance companies handled all of this 'genetic testing business'.  It used to be that people worried about testing 'positive' then not being able to find a company to cover them in the future.  This is no longer so, as law passed (here in the US) stating that 'insurance companies cannot refuse to cover individuals based upon genetic testing/findings'.  That's all kind of 'moot to me' because the insurance companies already don't like me because of my DCIS (I wonder if that changes in the future, after I have my breasts removed?).  

  So... we decided that I would have my blood drawn today.  It will now go to the only lab in the US that does gene testing Myriad Genetics.  A third party insurance company will be responsible for doing the due diligence with our insurance company to find out how much of the cost/if any they will cover.  Total cost of the blood screening is $3,100.  The third party will contact me if the total cost billed to me will exceed $375.00.  It would then be my decision whether or not to proceed with the screening.  (I'll let you know when/if it comes to that).  Test results general take 3 weeks.  

  To balance all of this out... as life often has a way of doing... when David & I got home from the doctor visit today... my Green Card was in the mail.  "Welcome Lisa, you are now a Permanent Resident of the United States of America" :)  

  Next step is on to see the Plastic Surgeon on Monday/Dec/15 to find out what the best type of reconstructive surgery will be for me.  We've both been doing lots of reading and right now it looks like a TRAM Flap is the best option if that is available for me.  Some of you, if you're still reading... may be thinking this all sounds like I'm dealing with this too well and that I should be *shrugs* more upset or angry or something.  Trust me, I'm plenty of everything and doing my very best to keep my head.  If anyone thinks I'm handling this any differently than I should be or making decisions they wouldn't dream of... *looks down at her shoes* ... the only way you'd ever know what you do if you were 'in my shoes'... would be to actually be 'in them'... and I hope no one I love (or anyone else for that matter) ever is...  

Can't Argue With a Cutie Pie!

... 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? :)

Thin Skinned & Thick Breasted... but Light Hearted :)

{Flowers and sweet wishes from Barbara in London}

 I was considering not keeping up with this Blog and instead just sending out  brief email updates but I've changed my mind (it's a woman's prerogative after all!) and will continue on with my journal here.  I had cause to wonder if what I was writing here made me come across as though I was being overly dramatic and I allowed those ponderances to make me feel very poorly.   After some reflection, a day with my beautiful husband escorting me to various doctors offices and some very in depth conversations with medical care givers... I think I'm doing completely fine with my expressions... and so I shall (as I usually do) go on :)

  I had an additional appointment scheduled into my day yesterday due to the level of pain/swelling/and general 'thickness' still in my left breast as a result of the needle biopsies.  I was told all of this should have passed within 24 hours of the procedure, and though I'm generally very quick to heal... this was still a problem.  I was booked in to see a doctor at the Breast Clinic at Swedish first thing in the morning and it was a good thing I went.  She told me that there may have been some bleeding internally after the biopsies (nothing to be concerned about) but that doing an MRI yesterday would be senseless as they wouldn't be able to see what they were looking for.  I'm really glad this was discovered before I had the test done!  Better than having someone tell me next week that the MRI was 'inconclusive'.  They have suggested I have the MRI done in two weeks (around Oct/8th) with a follow up with the surgeon on the week of the 13th.  And so I shall ... 

  The next stop on our day was with the Optomotrist/MD to have a look at these eyes of mine.  Being 43, I'm at that place in my life where my eyesight is starting to get a little strained and this was making me worry about my field of vision loss from my brain surgery in 1980.  My 'funny' for the day was when the technician asked during my field of vision test... 'Are the lights not flashing at all ... or can you just not see anything'? haha...  After an hour of tests and another 30 minute consultation with the doctor he told me I have 'perfectly normal yet highly comprimised eyesight' :)  He doesn't think there's any need to worry about my field of vision diminishing over time as my eyesight degenerates naturally, which is great news.  Unless I have Glaucoma on the right or something down the road... my reply to him... with a big toothy grin... was 'Don't even go there' :p  

  We got to go to the new 'James Tower' at Swedish to visit Dr. Desai (Cardiologist)... it's a lovely building and David & I got to discuss fixtures and finishes in the 'posh' waiting room and thankfully the doctor was equally (or even more so) lovely than the surroundings!  We went over my medical history and he started shaking his head and frowning at me around the Celiac Disease diagnosis :p  When we got to the part where he asked 'Why are you here now investigating your heart murmur... what is the surgery they have scheduled for you'? I told him I had just been diagnosed with DCIS, he looked at me very kindly and said ... 'well, I'm not sure how you feel... but I'm glad I'm sitting down'.   He said that he thinks the heart murmur may have been caused by an internal abscess I had several years ago, for which I had several surgeries?  Somehow the infection may have caused this but he's really unsure.  The good news is that he believes it is very minor and since it does not seem to affect my daily life that it shouldn't be an issue.  I'm scheduled to go in on Monday for a Echocardiogram

and a 'heart stress test' and that should allow them to both rule this out as a problem and give the surgeon the green light to do her thing.  

  As an 'interesting aside' on the day.  I had taken an application for a 'Disabled Permit'  from Metro Transit to the Optometrist's office to have him fill out for me.  Since I cannot drive due to my loss of vision, this makes me eligible for 'reduced fares' on public transit.  I'm now a proud 'card carrying member' of the invisibly handicapped :)  I should have done this years ago!  What actually stopped me was not having the insurance to cover the eye exam... but now (and for the rest of my life in WA State) can ride the bus till my heart's content and beyond... for $9 a month :) 

  We topped the afternoon off by picking up some Gluten Free cookies at PCC then going over to Freshy's Coffee (just around the corner from our place... but we'd never been there) and reminding ourselves and each other of why people like to hang out in coffee shops.  *Smiles* It's great to take the time and sit with a good friend and I realize my great fortune in having married mine.  It was the perfect end to the otherwise regimented day, to giggle and talk about everything and nothing... having a cuppa joe :)  Sometimes we lose ourselves in the everyday humdrum and or drama of life... but with us we always come back to center.  When there is an occasion to rise to we always do it together and this will be no different... 

You Can Only Hide... Crying In The Shower...

'till the hot water runs out.  Then you have to get out, blow your nose, dry off and get back to real world.  

  I really know now what Ed Vedder was talking about when he wrote 'The waiting drove me mad...' only I'm not waiting for 'you'... I'm waiting for 'answers/instructions'.  Kind of like dreading a trip to the dentist and you're not sure if he/she will say 'Yeah, let's go ahead and take out the molar on the upper right and that should do it' or 'Gee, looks like we're going to have to yank 'em all out' ?!  Yeah, I know... bad analogy but you get the picture.  

  Anyhooo, the line up looks like this for Thursday:

10:45 Eye Exam (don't ask, it just happened to be on the same day)

1:20 Cardiologist

3:30 MRI

  I learned a little more about the MRI process today.  It involves injecting a dye called Gadolinium through the bloodstream, which shows up on the scan.  Since Cancers require a higher level of blood supply than would normally be found, they can be detected by the elevated amounts of dye in the area.  They do the first couple of scans without the dye, then an injection (which should be painless) and then additional scans with the dye in your bloodstream.  Hopefully this will give them the information on the right side that they weren't able to access through the needle biopsy as well as (but hopefully NOT) finding anything else hiding in there.    

  Then it's a follow up with Dr. Christine Lee on Monday, Sept, 29th (who I have been referring to as the Oncologist... I just looked at her card and I'm not sure that's the case?)  Christine Lee, M.D., FACS ~ Diagnosis and Treatment of Breast Diseases.  I just found out the FACS stands for: Fellow, American College of Surgeons ... so whatever her title... it looks like she's done her homework.  I guess she's the one that makes the recommendation to the surgeon??  So, if all goes as is now scheduled... I should know what the course of prescribed treatment should be by this time next Monday.  

  I tried again today to get some better information regarding what our insurance will or won't actually cover and got no where.  Seems that the only way to get info is call the 866 line and every time I try I keep getting the same guy I talked to on Friday (who had an accent somewhere between Charlie Chan and Inspector Cluso... and sounded about as interested in informing me on insurance benefits as he would be in having his fingernails pulled out with pliers) and if I have to talk to him again it's going to play out like Jules & Brett in Pulp Fiction :p so I just keep hanging up.  It's a major insurance company ... somebody else must work there?? And as far as how all this will get paid for... I really don't know... right now I'm nervous as hell about what it is they're going to do to me ... that I'm going to have to pay for!  

  And I hope the waiting doesn't drive me mad... I'm a mess already ... and I can only shower so many times a day... 

Eyes Open...

Funny thing when you have absolutely no idea how to deal with something, how to absorb it... how much you allow it to absorb you... Something gets presented to you, becomes part of you and you have to keep it from becoming you.  Within the confines of this amazing mind of mine; the words 'Ductal Carcinoma In Situ' have rattled around a million and one time in the past three days.  In fact they're still knocking around in there right now as I try to paste my thoughts together.  

I promised myself that I'd use the Internet as a tool and not a weapon (against my already overloaded and befuddled mind).  My initial plan was to read only information that was written in the past 18 months and only from dependable sources, no 'chat rooms' or 'survivor forums' to further add to my confusion.  Well, that lasted for the first two days and even when only sticking to the 'real' information... it ranges from 'walk in the park' to 'hell on earth' so I decided to find out what the 'real people' were experiencing.  When I did venture into some user forums last night and chatted with some people coping with Breast Cancers of various levels of severity, I was a little overwhelmed.  I was asking about reconstruction after mastectomy and one woman replied 'mine turned out great... want to see them'?  Um... no thanks! :p  

I was taken aback by the number of women who were at first diagnosed with DCIS and within days/weeks of that original diagnosis, learned that the situation was much worse than they had anticipated.  To complicate matters even further for me, I'm learning that many women chose to go the 'radical route' and have their breasts removed to prevent having to deal with any future Cancers.  Kind of like getting ahead of the disease by removing the parts... so the disease can't have them!  *A La Christina Applegate*  I do realize that the real 'success stories' aren't going to be the women that are reaching out on Internet chat sites at 1am so I will keep my wits somewhat about me :)  I still am standing by that place in my heart/mind that says this could really be the 'best of the worst' and that it could all be over as quickly as it began... but I think allowing a little 'reality' in there to keep things on an even keel is warranted as well.  

One good thing I learned in my reading/interacting last night is that MRI is apparently the 'best' way to see everything that's lurking within the body, so I'm grateful that's what's next for me.  I've always said that if you're afraid to find out what may or may not be there... don't even look.  My eyes are wide open.

Congratulations! You have Breast Cancer...

Congratulations! Seems strange to say that word in connection with cancer, but I’ve been diagnosed with a type of breast cancer DCIS (Ductal Carcinoma In Situ) that latest statistics show is 98% to 99% curable. (And sadly, “cure” isn’t a word that’s heard in connection with all breast cancers.)

I am writing this blog for several reasons; to keep anyone who wants to know what's happening informed, to keep information straight for myself and to get some release through keeping a journal. To get things started I'll backtrack over what's happened over the past couple of weeks and include links that will help explain what the medical terms mean.

This all started with my finding small lumps close to the surface of my right breast a couple of months ago. Thankfully I finally had medical insurance through David's coverage and was awaiting my appointment with my new doctor (Dobrina Okorn) at Swedish Medical Center just up the street from us in West Seattle on August 13th. During the exam the doctor & I discussed the lumps, which she examined and agreed that they should be better looked at and that I was long overdue for a Mammogram. The Swedish Breast Cancer Center called me with my appointment for September 2nd.

It became evident on my first visit to the Breast Cancer Center that they look after matters very quickly. What I thought would be an hour for a Mammogram turned out to be about 4 1/2 hours. They actually have Oncologists on hand to view images as they are taken and when they saw my first films it was decided that I should have 'Microscopic Mammograming' done. After those images were viewed I was called back in to have Ultrasound done. During these scans I was informed that the lump I was initially concerned about was a harmless cyst but they had found Microcalcifications in my left breast. I found this slightly ironic, but in retrospect had I not been concerned about the lump, who knows if what turns out to be the 'real issue' would have been found? It was explained that calcium deposits are very normal but that when they cluster together it becomes a signal that something could be wrong. One of the first concerns is that Cancerous cells could hide inside the clusters. It was decided that I would have a Stereotactic needle biopsy on the site of the Microcalcifications which was scheduled for two days later on Sept. 4th.

The most painful part of my first needle biopsy procedure was actually not the procedure but the situation (I'm sure a Man designed the table the procedure is performed on :p ). You have to remain very still with your breast dropped through a hole in the table for about an hour. Since my delicate little breasts don't drop very far, I couldn't afford any 'pillowing' under me so not the most comfortable situation. They elevate the entire table and work from below you with a Mammogram machine. They make a very small incision at the site they have marked and insert the needle which draws the samples. I found this pretty uncomfortable but it didn't last very long. A small, metal clip was left in the site as a 'marker' that would show up on future Mammograms to allow them to locate the exact area where the samples were drawn from.

Other than a slightly sore breast and a moderate level of concern on the outcome of the biopsy, I was sure this was going to be just an inconvenience and a reminder from the Universe to thank my lucky stars for all I have in life. I received the call with the results on Monday, Sept. 8th and was very relieved to learn that they had found no Cancerous cells in the biopsy. (I'm already fuzzy on when/why I was instructed to make the first appointment to see the Oncologist? so it's a good thing I'm going to try to keep better track of this!) I was to meet with Dr. Lee on the following Monday, Sept. 15th. When I met with her she told me that although the site biopsied came back as negative for Cancer, she had found two other sites (one in my right breast and a second in the lower, left of my left breast) of Microcalcifications in the images from my mammos/ultrasound that she wanted to be biopsied; this was scheduled to be done on the following day Sept. 16th.

The second round of needle biopsies didn't go as well as the first. They were able to easily get images on the area on the left breast but couldn't achieve the same with the right. The radiologist made the decision that they would only biopsy the left at that time. Her reasoning was that if the second area on the left came back negative (as the first one had) that they would just keep an eye on the site in the right breast with a follow up mammogram in 6 months. On Thursday, Sept. 18th I received the call with the results of the second biopsy... Ductal Carcinoma In Situ :( I realize it's the 'best of the worst' ... but really not the information I was hoping for ... nor was I expecting. Reality is a bitch sometimes... but it is what it is... and has to be dealt with.

The next steps from here are to see a Cardiologist to find out what the story behind my Heart Murmur is? It is something that has been mentioned to me several times over the years by doctors but I'm not sure anyone ever investigated to find the cause or type? It is something that needs to be uncovered prior to having a sedative necessary for whatever kind of surgery is ahead of me.

I was also to have a follow up consultation with Dr. Lee (Oncologist) on Monday, Sept. 22nd which was canceled yesterday as she would like me to have an MRI done prior to seeing me again. I'm assuming it will allow her to better plan what our next steps will be.

So... Long story long :p and hopefully it won't become epic! From the reading I've been doing there is great success with Lumpectomies with DCIS and that Chemotherapy is not necessary. There is often follow up with Radiation which I understand isn't painful and is often said to feel like a 'sunburn' on the treated area. Most people who undergo radiation treatment continue to work... so all this may not even interrupt my job search :p :) I'll keep posting here as things transpire so that you can check into see what's happening if you like. I am very thankful for all of you and truly treasure your love and support in all of my life's trials and tribulations!

Lisa xo

*Post Edit Jan/30th/2009*

Somewhere along the way I remembered that I had referred to Dr. Christine Lee as being an Oncologist... which is incorrect... she is a Breast Surgeon.  Rather than just edit the text I thought I'd post this note for anyone who starts reading this from the beginning :)