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
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