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.