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 :)