Happy Anniversary

Happy?! Anniversary -

It's been one year today since I was told I had Cancer.

I'm a changed woman!

• The obvious physical changes - the temporary foobs, (these things on my chest that somewhat resemble breasts:/)
• Pre-mature, chemo-induced menopause, complete with the belly fat that goes along with that - NICE!
• The aches and pains (that I said from the beginning - "that wont happen to me") - I'm good after I get up and get going, but after sitting for any length of time, I look and feel like some 90 year old trying to walk! NICE!
• For someone who rarely took a tylenol, I now have an arsenal of drugs! One of which keeps the hormones at bay - just one of the side effects is belly fat - this is funny; funny queer, not funny haha - the medicine that is supposed to keep the cancer from coming back causes belly fat, and they say, belly fat predisposes one to breast cancer:) funny, huh?
• The limited range of motion in my shoulders from surgeries
• NEW HAIR! I love my hair! I've always had to do a lot with my hair, now - whoo hoo, wash, dry, mess it up a little and spray!!
• Speaking of hair...I may never have to shave arm pits again...I probably only had 5 hairs there before :) I now only have to draw on half of my eyebrows and I have eyelashes! Hair is good! The things we take for granted...
• My car, when headed north, auto pilots directly to Siteman Cancer Center - I'm gonna see if I can get that re-programmed for the mall maybe:)
• Likewise, when headed south, easily finds Cape Oncology - I'm sure there's a bar close that might be as much fun?
• Where I used to see the Doctor once a year, and then, often put it off - Now, I frequent several offices, in fact - this has become my 'social life'. I'm right at home there!!

OKAY, silliness aside, it has been a crazy year, but no all bad!!!!!!!!

For one thing, I'm a NED - (no evidence of disease) - NO CANCER!

AND, I truly have been blessed far more than I've been inconvenienced.

• I have caring, competent, kind, physicians
• I have met amazing individuals
• My priorities have shifted slightly -
• I've not only met, but have been able to help others facing the same diagnosis
• I have beautiful friends and family that care deeply for me
• Life Really is GOOD!!

And, when all is said and done, I just might have nice boobs!

Getting Back To Normal, whatever that is...

Hello Everyone!!

Although everyone's 'normal' is different...I feel like we're getting back to what I'd consider normal for us - or maybe all of this cancer treatment is becoming normal - or perhaps it's a little bit of both!! Whatever it is...day to day living is rarely hindered by TREATMENT anymore!!!

Had surgery a couple weeks ago, recovering quite nice...Came home with two drains - one of which Glen & I pulled - this is where everyone 'freaks out' - some, simply because I'd even consider doing it myself and then most, at the thought of Glen assisting:)

To be honest, he was a little freaked...but I had been at the Mayfest all day with the kids and crafting, walked home to meet Glen and as my first assistant, Amie, had already left for the evening and of course I wanted it out THEN, I just began... clipped one stitch, then the problem arose when I couldn't really tell in the mirror on the tighter stitch and really didn't wanna cut ME or the drain tube and was really hard to use right hand ... anyway...called for Glen, handed the tools to him and gave instructions - (not to be confused with orders)... he clipped, I pulled, he gasped, I put a little pressure dressing on it and we were back off to the Mayfest on foot for Pork Burgers and Beer.

So, ya see, it's not that bad...surgery on Monday, home on Tuesday, walking up town on Saturday - I resembled a homeless woman, not able to carry or lift with Right arm, I pushed our beach cart (stroller like) up there with my 'stuff'' in it and - the thought was, when I made the many purchases I usually make at the craft fair, I'd have my cart for carrying... Seems my children may have been a little embarrassed, but they're tolerating all this weirdness so well!!!!!!

Anyway, 5 days post op, walked up to square, walked all day, then back that evening -

back at work last week, yesterday back to St. Louis - had other drain pulled -

"Free at last, Free at last, THANK GOD I'M FREE AT LAST"!!!!

Sorry, somehow people adjust to ostomy bags, etc. but - I just didn't like having to deal with securing, hiding, etc. the rubber stuff hanging off my body -

So yesterday spent the entire day in St. Louis with Dr. appts and stuff, then met friends downtown for dinner, drinks, and Cardinal Game - So, two weeks post op, really back in the swing of things:)

Still praying and hoping (Notice prayer before hope) that the placement of this tissue expander is successful, heals without infection and that I have what looks like boobs before summer is in full swing!!

For those of you interested in the treatment part of this...

HORMONES - I started taking the hormone blocking medication - as a refresher, my tumor was hormone receptor positive, so to prevent recurrence, these meds are usually taken 5 years - yes, 5 years. They too, come with some side effects, but all manageable.

HERCEPTIN - best described as an antibody, binds to the receptor site on cancer cells and turns those 'aggressive her 2 nu positive' cells into negative ones. Now I don't pretend to understand this...I've been told I don't have cancer, so where are the cells this stuff's going to bind to?! - maybe I'll ask -or maybe, I'll just suck it up, take it like a man - Especially since my port is gone - I'll get stuck IV each time - ouch?

Start next week for 9 more infusions:) I was getting this medication with chemo, I'll get it every 3 weeks.

Now, enough about all that breast cancer stuff!!

Oh, yeah, this is about all that breast cancer stuff... tootles for now:)

Long Time - No Talk To (Blog to)

Hello Hello Hello - Sorry it's been so long - Where it used to be that Cancer Treatment got in the way of Life, now it seems Life is getting in the way with Cancer Treatment :)

Work stuff doesn't take a break at my convenience and wow has it hit...in the past couple months have had...

• Personal Care Audit, where it seems they think I owe them $10,000 - because I wasn't in the building with the documentation when they 'stopped by' - this I found out while on the way home from the hospital from the latter surgery...
• Fire Marshall inspection while I was in the hospital - one phone line to let the fire department know that we're on fire is not enough - need two - translation...$3000 new fire panel....
• State Survey while I was at Physical Therapy appt...3
• IRS field auditor popped in while I was at physical therapy last week -
• New Construction - waiting for architect to finalize plans so we can get started...
• Unemployment Claim - appealed, have phone log to back up the fax, but of course, they say they didn't receive it - SO someone who has no right to unemployment is getting it, and we're paying fo it...
• Relicensure Application due ...
• What Else? - I'm not sure ...I 'reassured' Kelly that the only one left is the Devil himself - she didn't think that was very funny...I'm sure, since she's the one there that gets to greet and deal with these visits... although, if Satan darkened our door, I'm sure Kelly would handle that one with cool too! She's been amazing!!

Moral of the story is that all of these things are doable, but typically they would only occur one at a time, or not at all ...

So, I'm going to St. Louis every day for radiation therapy - needless to say, takes 4 to 5 hours out of the day SO, THERE'S NOT MUCH TIME LEFT OUT OF THE DAY TO ATTEND TO THE DETAILS REQUIRED TO ADDRESS ALL OF THAT "JUNK" AFOREMENTIONED.

OK, that was venting, maybe whining...but really, I'm dealing with it pretty well... I believe that if I weren't going through the Cancer Stuff, I'd be really stressed about each of those things - but, it's just something I gotta do... it'll get done when and how I can do it - no time to belabor the process, because there are deadlines for everything - so just cranking it out (probably half-assed) but it is what it is....half-assed, can I say that here?

SO, now the good stuff, as a reminder, my oncologist told me "You Don't Have Cancer" - I thought the pathology report looked good - for what I know, but she was delighted and that may even be an understatement!!

So, I don't have cancer anymore, just gotta finish the cancer treatment - As I already mentioned, doing radiation now...

Total 28 treatments, about 30 minutes each - most time spent aligning everything, then with each treatment a CT Scan is done to make sure I'm in the exact position as when they did the planning , so the treatment is very precise. Treatment itself is 9 minutes, and yes, I can fall asleep in there, just like the tanning bed:)

I have the Matt & Jeff duo, very kind and capable therapists delivering this treatment - they've been extremely gracious to my 'guests' - allowed to watch the procedure and they explain everything... Let's see...after today...

17 down - 11 to go, Engagements are limited - anyone wishing a

'ticket' to the show - contact Di Di for scheduling:)

And remember with the final treatment, we get to ring the bell! So, might have to have a group session that day and a celebratory lunch or happy hour or...?

Mark your calendars...April 5th

CAUTION!! - next segment contains reconstruction details aka stuff about the boobs (there, you've been warned)

OK - I'm sporting the uni-boob, it's filled with 750 cc of saline and for those of you who remember The Brood, it appears that alien pets could erupt from this thing any day! Actually, it's not that bad anymore...skin doesn't appear so stretched:) But it is like having a softball glued to my chest. So, now you may have a visual (sorry) and a better understanding of the infamous tissue expander.

As far as the 'other side' - the one that didn't do anything wrong, felt jilted, and rebelled - well it's a gnarly looking scar with some extra skin hanging around awaiting the day when it too can be an alien dwelling dome. For now, I stuff! Actually, I have a silicone prosthesis that I can and have gone swimming in-wooo hooo!

I suspect it too may become another one of those things that falls into the Glen can't wait for all this to be over, so we can have 'fun with it stuff' - I think he really wants one of my wigs - but can't imagine what we'd do with this thing - if you have any suggestions, let us know:)

On to the HAIR - as I've told my closest friends, the hair fairy has a sick sense of humor ...where one's hair is typically short and curly (use your imagination) It is stick straight and so conversely, the hair on my head couldn't be any curlier!!!!!!!!!!!!!!!!!!!!!!!

it was also very grey, but my beautiful daughter Melyssa took care of that for me...I even have highlights, wooo hoooo -

Think that's all for now - Love to you all!!!!

Thanks for the continued encouragement and support... It's hard to believe it'll soon be a year since this ride began!

Re-cap: June Diagnosis

6 months Chemo

Surgery (2)

Radiation (28 Treatments)

To Do: More Surgery (May & ? September)

Herceptin (IV antibody 9 more months - Monthly)

Hormone suppressing therapy (oral med for 5 years)

And.. Get on with Life. Enjoy every Day. Recognize and Appreciate my many Blessings. Support and Assist others who are affected by Breast Cancer.

Here's a poem that a fellow BC Sister's daughter wrote for her - Beautiful Sentiment...

The Climb

We all start at the beginning and tirelessly forge our way to the top.

Our minds will us onward when our bodies beg for us to stop.

Not everyone will make it. Some will succumb to exhaustion and defeat.

But somewhere atop that mountain, one woman emerges, standing steady on her feet.

One long journey now behind her, she breathes a proud sigh

For she knows that she can conquer any mountain, no matter how high.

Unexpected Surgery

That proverbial 'Road to Recovery' took an unexpected turn...

I had not felt real great for several days, but nothing specific no temp, no redness/swelling, no drainage, etc. etc. etc. BUT last Tuesday evening (Jan 5) was chilled, ached - thought I caught Glen's 24 hr bug - Awoke Wed am, with 102 temp, nauseated, dizzy, VERY SICK!!!

We already had an appt. in St. Louis that day for Dr's appt., another fill - kinda like going to the gas pump..."filler up"... and hoped to have the two remaining drains pulled, as THEY ARE A PAIN!!!!!!! However, by the time we got to the docs office, although I felt much better, the appearance of my right breast was apparently 'not good' - Not only did I not get a fill, nor did I get the drains pulled, I got admitted directly to the hospital for IV antibiotics!

Hello!!!! This is not supposed to happen to me!!!!!!! Not in the plans! Interfering with my schedule!!! OK, I really didn't respond in that manner, not outwardly anyway :)

At the time, I felt sure the antibiotics would take care of it and we'd be on our way in no time... Just another inconvenience...BUT - it takes 72 hours for lab results to reveal the specific bacteria causing the infection - so, was there at least that long... Sure enough, when the pathology came in, had to change the antibiotic they were giving me... Then wanted to observe response for at least 48 to 72 hours to that antibiotic....which all along, there seemed to be improvement each day - BUT - physicians feared that the bugs could adhere to the expander, and would cause more trouble in the future - and that possibly when had the surgery to exchange the expanders for implants, that the implant too could become infected...

So, we opted to have the expander removed (for now) - had surgery last Wed - fortunately it's not the side that will be getting radiated next month - so when I've finished radiation, will go back to surgery, have a tissue expander placed again on the right, have it filled in time for the exchange surgery - which won't be until June anyway - and back on track to 'normalcy'...

Glen's theory is that this 'boob' is getting back at me for treating it the way I did - after all, it hadn't done anything wrong....why did we discard it so willingly? Ha!! Leave it to Glen to come up with that analogy!!

So, I'm HOME - after 8 day hospital stay - Wow, hadn't been outside in as many days...CRAZY feeling! I did miss out, however, on those brutally cold days last week....

Kudos to BJC -North Campus:
I must say, if ya have to be in the hospital, this would be the place to be!!! No complaints...every nurse (and since I was there so long, I got acquainted with almost every nurse) seemed genuinely happy to be there. Each nurse was very accommodating, personable, attentive, and competent!!! Everyone from housekeeping, food service, security, pastoral care, physicians - Really EVERYONE was very pleasant, welcoming, just nice!!

And Food Service - is actually called 'Room Service' - Can order anything on the menu anytime between 6 am and 8 pm - And although there were a certain amount of necessary interruptions, i.e. vitals, medications, just checking...the floor was very quiet!!!

Even the kids, when they came to visit, said "this doesn't look like a hospital"!

Happy New Year!!

Aha! Leaving 2009 with much love and grattitude for my many blessings!!

I want to acknowledge humbly, the many calls, cards, emails, caring gestures of friends and family - I'm overwhelmed!! Although I didn't get a chance to talk with each of you personally during my surgery encounter, please know how much I appreciate your correspondence!!!! I find comfort in knowing that there are so many positive thoughts and a strong network of prayer; that we have much continued support on this lengthy journey!!

I refrained from posting too soon after surgery as the Percocet sort of numbed my senses - I'm sure Glen was beginning to think they might have removed half of my brain along with the breasts....

I won't bore you with the details - but recovery so far has been pretty easy - Not near the pain and incapacity that I expected!!

Saw the Dr. yesterday - still have two drains, apparently using my arms too much - hand to mouth eating, drinking, and using tv remote must account for too much repetetive movement, because REALLY, I feel like that's all I do!

OK, so I probably did a little more, but, I'll stop doing what little I was doing...AGAIN, I'm not complaining, I can pet the dog with my feet!

Now, Drum Roll..........In addition to getting a little fill in the tissue expanders - for those of you keeping track, 250cc at surgery, 60cc yesterday...now 310cc in each!! Too much information for the rest of you?! - Sorry - crazy how all of this now seems 'just normal'! ANYWAY, the cause for the drum roll.....pathology report says no cancer cells remain!!!!!! Of course that's what we wanted, but you never know...God is Great, and chemo did it's job!

Was a great day with my hubby! I felt really good, taste back to normal, wore real clothes...Got GREAT news, went shopping, out to dinner, even had a cocktail - it was, after all, happy hour.

Wishing you all a safe celebration, much happiness, love, and good health as we enter 2010!!

Before & After Chemo

OK, so I have this photo booth on my imac and I really don't use it...the kids have great fun with it, but I kinda forgot it was here - ...But - got a package in the mail the other day, had ordered an 'inexpensive' wig - was going to say cheap, but inexpensive sounds nicer. Anyway, American Cancer Society offers $100 grant for 'head gear' - so got another wig and a few scarves to get me through the winter - ANYWAY - came home from work, I take this $38 wig (compared to the ~$200 ones I bought pre-chemo) out of a plastic bag, plop it on and, as I always do right when I get home, had to check my e-mail, FB, etc....was sitting at my computer - could kinda see my reflection in the screen and decided to go to this photo booth and see 'really' what this wig looks like...(Now that is about as much multi-tasking as I can do these days) --- hence, the photo on the right...

During this time, Glen comes home from work via the back door and the Schwan men - 2, one in training, are at the front door... Our tried and true guy quit the company last month - so these guys don't know us - I really didn't have time to 'change my hair' or 'find a hat' so I let these guys in, we (Glen & I and the '2 guys) are in the dining room, chatting, perusing through the catalog, placing the order...all the while I know I have 2 big cardboard tags hanging out of the back of my head. I really wasn't too concerned about it, but now I do kinda wonder what the fellas thought...

I was looking back through this photo booth thing at all of Matthew's amusing shots and I found this (photo on the left) And apparently I had used this little ditty another time - Again, lookin' at the hair - Melyssa had cut and colored my hair and if I remember correctly, I was trying to see my highlights... So, there you have it accidental before and after chemo photos....

Yes AFTER CHEMO - it's not been as climactic as I thought it would be...I still have so many of the side effects - was really hoping to feel like a super hero for a few days anyway before surgery...

Since I do have a few days left, maybe SUPERHERO mode will kick in yet this week;)

Although surgery for Christmas may sound like a bum deal, it's probably not a bad thing that I've had so much to do, that I really don't have time to wimp, ponder, or stress about the fact that in now less than a week someone is going to violently hack off two rather large appendages, separate a layer of my chest wall, shove hard rubber balls in that space and stretch until it almost pops - oh, sorry - I forgot, I don't have time to think about this...

Really, we're doing good, got employee Christmas party, Resident Christmas Party, House decorated, and all of our Christmas Shopping done!!

Will have surgery this Friday morning - will let you know how it goes soon after, if I'm not too sedated from the pain meds and anti nausea drugs - Anesthesia is not my friend...will probably awake in recovery heaving - hopefully I won't dislodge any of the multiple tubes exiting my body:-

Thank you all for your support, love, prayers, etc etc etc... We're almost there...:)

Wishing you all a wonderful holiday season!!!

Love & Hugs to all!

Di Di

Chemo Countdown...

Time sure flies with weekly treatments!! I hate to admit, that I've not been good at all about exercising - had grandiose idea that I'd 'get in shape' with this regimen! HA! FAT CHANCE, literally - Combinations chemo side effect, exacerbated by the steroids...weight gain, bloat, puffy, fat face - even my head swells - and not from the usual ego...

I believe the side effects are cumulative, as I used to only feel kinda blah on Thursdays, and now, it's sort of lasting until almost time for next treatment... needless to say, rather inconvenient!

Anyway, only 2 more treatments left! YAY!!!

I have a surgery date, as well....December 18th - Siteman Cancer Center in St. Louis, be there at 0530, needless to say, we'll be back at the ever so convenient and very nice Parkway hotel the eve of surgery... We don't do mornings!!

Tootles for now, just wanted to let ya know what's going on!

Much Love to All!!

Di Di