Home again, home again...

Short note to let everyone know - Tracy was released around 11 AM, we're home and she is resting / sleeping.  One of the surprising things about this event is the level (or not in this case) of bandaging / padding / etc.  Laparoscopic Surgery #FTW!  A couple of band-aids, a little Dermabond (love that stuff), and she's good.

Oh - and there are photographs. Internal ones.  In color.  Need to think a bit about publishing them, but they're cool. (yes, yes, *I* know I was not the one with three trocars - and a camera - piercing my abdomen)

Bill

Tracy's drinking her lunch. Again. Nothing I can do about it..

So - the expected Recovery Room time slipped a tad - nothing out of the ordinary - it just took longer. Everything went fine and according to plans.  At any rate - Tracy is up in her room now resting, and sucking down lunch.  Bouillon, orangeish flavored gelatin,  ginger ale, ice water, tea, and - some Lemon Italian Ice (although she may not miss that item if it <cough> falls off the table.  (I'll probably edit out that last little bit before she can get back on a keyboard though...)

Number 9. Number 9. Number 9. Number 9. Number 9. Number 9. Number 9. Number 9. Number 9.

Tomorrow is Tracy goes in for surgery Number 9. (yes - you'll have the Beatles rattling around in your head for a while - you're welcome)  No - no recurrence, "just" a prophylactic parts removal event, albeit a major one four years in to this journey and a touch up of some painful reconstruction scar tissue. After being slammed hard in to chemo-induced menopause in 2010, those plumbing parts are pretty much useless for their intended purposes anyway.

One of the long term constants with cancer survivorship is that there are no constants.   Changes in medications, chemotherapy, and otherwise what one would hope would be a stable way of life are the constants. Yeaaah. Riiiight.. 

With Tracy's specific makeup, original cancer diagnosis, and long term prognosis, anything which increases or at least prevents a reduction of estrogen is somewhat problematic. So - how do oncologists deal with this?  While there may be more than the two therapies I mention below (I'm not an oncologist, although I could play one with my experience), the ones we are familiar with are based on "Aromatase Inhibitors" (Arimidex in Tracy's case), and - a mouthful - a "Selective Estrogen Receptor Modulator" - aka Tamoxifen.

One factoid I didn't know, by the way, is that Estrogen is made in the fatty tissues of our bodies, not just in the female reproductive organs.  Go figure.    Well - back to the parts thing..  Since Tracy's cancer was of the type sensitive to estrogen (ER+), anything to reduce estrogen production is a Good Thing - except - that the side effects of these Good Things are generally Bad Things.

Let's Make a Deal!

Usually behind Door #1 for an oncologist trying to reduce residual estrogen production is the above mentioned aromatase inhibitor. Its claim to fame is that it -well - inhibits things. Those things Aromatase ability to do its thing.  What is Aromatase you ask? It is an enzyme that synthesizes - TA DA - estrogen. Hence - aromatase is persona non grata in a post-surgery/post-chemo regimen.   

It is one of the "go to" treatments, but..... It has a dark side.  In Tracy's case, it was her initially prescribed treatment, and it became evident pretty quickly that this was not going to end well.  It left her crippled from joint pain, combined with an in ability to not be hunched over almost all the time.  As her doctor put it (paraphrasing) "Wow - you seem to have an extreme reaction...".  Known side effects - osteoporosis, liver damage, kidney failure, adrenal damage, and more. So - crippling, bone destroying, organ damaging side effects, or increased estrogen production.. Neither, thank you.

If you choose (or have chosen for you) Door #2, it usually is Tamoxifen or an equivalent. Its purpose in life is as the antagonist of Estrogen Receptors in breast tissue, with a usual course of five years. Another thing I did not know is that "agonist" is a real word, the opposite of - yes - antagonist. Really. Remember this.  Where as Door #1 inhibits the production of estrogen, Door #2 gets greedy with the receptors and prevents estrogen from actually binding to them.  End result? Less estrogen laying around to feed any ER+ cancer. Downsides: Potentially significant.  Remember the agonist thing? Well... Tamoxifen is a known carcinogen (Srsly - true) and - is known to increase (not insignificantly) endometrial cancer - i.e. uterus. Here's the rub - the five year thing is because of the increased risk of endometrial cancer - but - BUT - research is now showing that there are significant benefits of staying on tamoxifen for 10 years - maybe more.  



Ok - a 1000 words - you should be screaming "WHAT IS YOUR POINT????????"

It comes down to Crippling Organ & Bone Destroying Door #1, or Cancer-for-some-other-part-of-you Door #2.  There really isn't much to be done with Door 1.  However - with Door 2 you have "options".  These options are what Tracy has elected to invoke tomorrow.  

So - up at 4:00 AM tomorrow, and "we" report to the surgical unit at Exeter Hospital tomorrow morning at 6:00 AM EST. Yes - Six AM where Tracy will be prepped for a Total Hysterectomy and Bilateral Salpingo-Ooporectomy, aka "BSO" - and as part of  a surgical two-fer - the removal of a keloidal scar (left over from the last several reconstructions) from the left breast.  Think of a keloid as a really strong band-aid which is permanently attached to a sensitive part of your body, which when flexed (basically any time you move) really, really hurts.

More tomorrow.

Bill

Puckered Up Team Strides Again and An Update!

 It's October and I am doing well.  My last check up and MRI in September came back clear.  I am so grateful, relieved, empowered, and supported by my medical team, family, and friends.  This amazing group of people continues to inspire me to power through as each challenge is tackled.  Kicking ass and taking names for each step in this process.  I wish the same for every cancer patient.  Gathering information and getting yourself heard can be so difficult for some.  I hear it, and read it all the time. 

My experience as you all of you know has not been like that.  With Bill by my side, we have checked off so many items on the checklist to good health.  That continues.  Still on Tamoxifen there are continued conversations about what that means long term, how treatment protocols have already changed/advanced this year, what combinations of meds I will need, (do I really have to do another trial of an aromatase inhibitor?), what possible surgery may be pursued, and generally how to live life after chemo, radiation, and eight surgeries.

 

I continue to follow some warriors and send prayers and good vibes to Judy, Brad, Carl, and Pam who continue through their treatment.  Millions of folks with cancer fighting every day.  The American Cancer Society is an organization that helps so many.  Please take a minute to read the note below from my beloved childhood friend Janet Manning Smith about the small part The Puckered Up Team will play to support that organization.  So many of you have been long term supporters.  Thank you for all that you do.

 

Puckered Up for Tracy Team

c/o Janet Smith

11 Prospect Street

Dover, NH  03820

 

UNREMARKABLE!

I am almost 3 months out from my April surgery.  After giving my Flex HD a tightening up to put the implant back where it's supposed to be anatomically, changing out both implants for smaller ones, cleaning out some scar tissue, and getting me all back to rights again I remain unremarkable.  Ha ha!  We had Dr. Ras for the ultrasound guided boob tour.  He was there in 2010 when I had to go back for the added details of my original diagnosis.  Great guy who has a wonderful demeanor and gives you the straight story.  Nothing better than being unremarkable.  He explained the little pocket of fluid - nice and clear.  It's tucked in under a little area of the implant.  Bill says to think of it like an under inflated dodge ball.  Yup kinda that same feeling.  No reason to cause any further disturbance.  Don't want to repeat the Infection Year of 2012!  Getting farther away from that year feels great.

I have some funky stuff still but all easy breezy considering...  Neuropathy that has really been humming.  Whooee!  My fingernails are still coming off again because of all the high dose antibiotics post surgically.  They have the appearance of what I call Casper waves underneath what is left on the nail bed.  I just have to be careful with them as they lift easily.  The trick is to do the gentle emery board over the area to prevent any unintended hookings.  The scars across the breast areas remind me of my situation as one scar leads into another, and the scar tissue does build up again.  It is like continental plates colliding inside me.  I try to think of them of as reminders of how far I've come.  Power surges! 

For all your wonderful thoughts, hugs, kisses, cards, emails, calls and notes thank you.  They do make a difference and three years later they absolutely still fortify me.  Please send your good vibes out to Pam and Brad who are fighting brain cancer.  They fight a horrific fight.

Enjoy the fourth of July!  Celebrate each day!

Deja vu all over again...

June 2010
pre-diagnosis,
puckered skin...

We're baaaaaaaack.

Sort of got taken aback this morning here at EH. One of the pesky residual things left over from Tracy's #8 surgical procedure is what appears to be a pocket of fluid which has not been absorbed over time. Today's fun & games is a trip to the Imaging center in the Women's Health facility here at Exeter Hospital. The plan is to  poke Tracy with a large needle guided by ultrasound to hopefully aspirate any remaining fluid.

Yep - loads of fun there. ( NOT )

June 2013
3 rounds of chemo,
1 round of radiation,
8 surgeries later...

What caught us off guard is that the waiting room the staff put us in is the same room in which we were planted on the day Tracy had her initial biopsy done resulting in her original diagnosis. I asked if they had another room (karma thing). They said no.

Same decorations.  Same plants. Same plum colored johnny. Same nurse. Same couch. Almost three years to the day.

Much to think about as well as be thankful. 2013 is the year we finally are able to climb out if this hole.  

Heartbreak in Boston

April 15, 2013

May you and yours remain safe and sound.

Rocked the Surgical Socks

 Well I got through surgery on Wednesday with flying colors.  Had a reaction to the anesthesia so we closed the place.  Got home and crashed.  Don't even remember leaving the hospital actually.  I had a check up on Friday with Dr. Marble's NP Carol and everything looks good.  I'll see Dr. Marble this Tuesday.  I even got to take a shower this weekend.  Woo hoo!  Got my antiseptic cleanser and hopefully the 2012 year of infections will not repeat in 2013.  Bill remains my everloving care taker and I am trying to be a patient patient.  I have this week off for recovery and all I want to do so far is sleep.  That should ease up in a few days.  I will lay low and be as good as gold.  I just want to be able to get to enjoying a nice spring as the weather eases up.  Thank you all for the lovely out reach.  It always helps to know such an amazing group of folks is out there sending such great vibes my way. 

Spring? My Flex HD has sprung!

Well it's been a mental hurdle to get back on the blog.  I had finished up with all the antibiotics just by August of 2012.  Took a cross country trip with Janet and Abby in October and then it seems the little niggling thoughts kept creeping into my mind.  GI distress had begun to occur - particularly with a vengence right after Christmas.  My present was I got myself a new specialist in GI Dr. Tomkins and her nurse practitioner Heather Lamire.  My mind told me it was a true success to be able to complete a colonscopy.  How many folks do you know who are excited to have one done?  Me!  I passed with flying colors.  Nothing awry just a general disturbance in the force.  Got myself some kind of mutated Norovirus and lucky me it would last more than two months.  I am reminded by everyone on my medical team how sick I was, how my immune system was wiped out, how well I am doing. All points taken.

As fate would have it the last week of February I noticed one day after my shower a physical failure in my left breast.  The implant had begun to head toward my left hip.  The Flex HD had either stretched or failed.  Lucky me to be empowered and knowledgeable...  My team warns you of rejection of parts after a mastectomy.  They coach you through every single phase.  They tell you how common it is to have the reconstructed parts end up in your arm pit.  Well aren't I different?!  Anyhoo, I got assessed again by Drs. McKee and Marble and Howe.  No recurrence thank God. 

So that's where I am.  Thankful.  I will have my 8th surgery tomorrow.  Does it make me sad - yup.  But does it make me take stock in what I have - you better believe it.  I have met two more folks with brain cancer. One of them has to have a feeding tube, maybe permanently.   I've seen  a number of folks in treatment pass away.  I need new implants and some new Flex HD construction. 

I am ok with that.  I am so truly grateful for the strength to get past this.  I am so grateful for all that you do for me.  I am blessed to have such wonderful support, emails, calls, cards, hugs and kisses, texts, and yes now tweets and facebook postings.  Abby built me accounts for the trip and I am trying to figure out how to use them!  Bill or I will update after surgery.  Thanks for the amazing vibes.

Jenn's Doing Great

Jenn finished her radiation on March 1, 2013.  She is doing well.  She has skin that is more fair than mine so the calendula get worked well but she did have a couple of spots that looked like a bad sunburn.  She got all the itchiness that can drive one mad.  Her team follows up with her this month and she may be doing Tamoxifen.  On the lighter side we got her all moved into her new house in Dover.  It's the perfect one for her.  A small cape on a quiet street, a large beautiful yard, room for her, the kids and the dogs!  She is settling in well and marching on through it all like a trooper.

We're still here... Don't worry...

Yeah - been a tad off in posting for the last few months.  One of those things where everything conspires against you. Holidays, life, work, weather, Biz travel, InfoSec Cons, etc..

I / we *promise* to get something more substantial regarding an update out in the next few days / this week.

Oh - and for any weather geeks, we now have a WX cam up and running.  The position has yet to be finalized as I am still designing a weather tight enclosure, but for now - it is looking almost due west out to the back yard. http://www.wunderground.com/webcams/N1TON/1/show.html


Bill

Progressing

Jenn had her conversation with her surgeon this past Friday.  No further surgery needed at this time.  Great news!  She will need to heal until mid December and then they have recommended 6 weeks of radiation.  Jenn has chosen to go for her treatment at the Seacoast Cancer Center of Wentworth Douglass Hospital.  She will meet with her new radation oncologist sometime in the next two weeks.  She is feeling better since surgery and recovering well.  Her tender area is coming along. 

For me I am definitely coming along.  I have some weird stuff still, like my right hand has tremors when overtired or cold.  I told Bill to look for a nice internet job so he can work from Aruba, or the Turks and Caicos, Bali... Anywhere warm would suit me just fine.  A new twist is I get these odd, jump out of my skin itching in my hands and feet.  It has happened twice in the past month.  It seemed to be brought on perhaps by overdoing it each time.  Not sure but most unpleasant and it lingers for about an hour each time.  So I am still building stamina, but doing so much more.  My body obviously has it's way of telling me when enough is enough.  My team at Oncology told me I'd feel better at the six month mark post treatment.  It just happened that I needed lots more treatment than just they had in store.  My 6 month mark for all the post infection treatment will be this January.  That's why they make all the noise makers and hold celebrations! I'll think of New Year's as everyone celebrating and sending good vibes for a great new year of great health!

2 Days Post Recovery

Jenn is doing really well.  She has about a 3 inch incision with handy dandy derma bond.  The doctor said nothing else unusual was found and she felt she was able to get everything.  Jenn has been sleeping off the meds and has already been able to take a shower and get out of the house for a bit.  The pathology results from surgery will be back on Tuesday.  I'll be able to update again this week when she knows more.

Jenn's Surgery

Tomorrow Friday November 16, 2012 Jenn will check in for her surgery at 7:00am.  I talked to her earlier this evening.  She is already on the no food or water track as she needs a 12 hr window of empty stomach.  She'll have an excisional biopsy.  They'll take small amounts of tissue and test while she is under to establish a the line of healthy tissue.  Please keep her in your thoughts and prayers.  I'll let you know how it goes. 

Made Great Strides!

Me, my Dad and Jenn

Me and Jeremy

The team.  Missing from the photo David and Makayla.

We had a great day for Making Strides.  I was able to walk the entire event!  The sun was shining and the mood was wonderful!  Thank you all so much for all the support to the American Cancer Society.  All of your donations go toward conquering cancer.  Such a great crowd assembled in the park this day, but our team rules!  

So Hard To Write The Words

My sister Jenn has been diagnosed with early stage breast cancer.  Weeks ago she had the suspicious mammogram.  The follow-up mammogram, the biopsy, and an MRI were the confirmations.  She'll have the second MRI with the dye as I did to confirm the cells are contained.  She'll know more in the next few weeks as she meets with her surgeon after the procedure.  Possibly just a lumpectomy without chemo, or radiation.  That is the hope.  DCIS - ductal carcinoma in situ.  Early stage.  Curable. 

I can't even believe the irony of this being breast cancer awareness month.  Both of us will walk the walk tomorrow with the Puckered Up Team - Making Strides Against Breast Cancer.  So many of you have been amazing supporters of this event.  So continue to spread the word.  All donations of any amount are truly meaningful and can still be accepted after tomorrow.

Left click once on the link below and then click underneath where it then says "Go to link" to get to the Making Strides Against Breast Cancer site.  The Puckered-Up for Tracy team is formidable.  Jenn and I are formidable.  Thank you all for everything you do to put cancer in it's place. 

http://main.acsevents.org/site/TR?px=17567407&pg=personal&fr_id=47475&fl=en_US&et=O9r7QjpzU_y-9wTg9rRSYQ

Medical Oncology & Cardiology Anyone?

I met Dr Syms yesterday.  Had my first check-up with him as my new oncologist since Dr Hammond retired.  Dr Syms - very nice guy.  Best news is my labs all came back spic'n span clean and I don't need another appointment for 6 months!  The crappy part is Exeter Hospital is moving forward with a contract with Massachusetts General Hospital medical oncology and terminating the contract with Dana Farber.  MGH does the radiation oncology and so EH feels it's a good transition to bundle both services.  My initial reaction is I'll probably follow Dr Syms to the Hooksett office of Dana Farber.  It's just it is such an amazing team at Exeter, it is challenging to imagine as a patient.  It is also challenging for all the staffs too.  What will my nurse practitioner decide to do?  The nursing team, the lab folks, the staffs in charge of the clinical trial - there really is such a bond to the whole group.  My positive is I am in the maintenance phase and don't need to be seen as often.  I have some time to decide.

Another good appointment was with my new cardiologist Dr Sutherland.  Even though my last ECHO was a slightly changed from my baseline 2.5 years ago Dr Sutherland doesn't feel there is anything to be concerned about.  These appointments had weighed heavy on my mind since 2012 hasn't been the most healthy.

Still building stamina, still get some tremors when tired, but I feel like I am coming out of the fog of months of antibiotics.  I do feel better.  My hair is still coming back.  My eyes don't want to slam shut at 2:00pm.  Great steps.  Each day I hold dear all the wonderful people that help me to keep going in a good direction.  Thank you so much for checking in on me.  All the good vibes feel wonderful!

Hunkered down

Well it's been almost a month since I posted.  My thoughts have been trapped in my mind as it has been challenging on a couple of fronts, but still getting better.  Getting used to Tamoxifin and my system has been off for a few weeks so trying to lay low and enjoy the rest of the summer.  We went to the Chicago & Doobie Brothers concert with part of the vacation croo and that was great.  Bill was able to capture the bands dedication to fighting breast cancer highlighted by a pink stage.  Enjoyed every wonderful moment with our friends, the music, the laughter, and singing!  My hands don't like clapping.  They were angry hands the next day and did not want to be used, but like most of these physical reactions, it levels out and was a good reminder of a fun night. 
Another life transition is my dad decided to move to Maple Suites in Dover.  A completely independent retired living community where he has his own apartment.  They serve all the meals, clean, etc so it is a safe and good environment.  It was still a very emotionally difficult move for all of us and we are working with him to ensure he is feeling supported and comfortable. 
This leaves us with the task of selling Highland St and we had the big yard sale the weekend after Labor Day.  Even though my parents had purged a lot over the years there is still so much to do - as many of you know.  My dad wants to make sure it's sold in 2012 before the full blown winter has arrvied.  I should be listed this coming week.  We'll go back this weekend to prep some more.
Life keeps moving so must we all.  So off I go to work.  Just wanted to get a quick post in as the check in calls had been increasing.  Thank you for that.  xoxo

After August 20th!

Well it's August 22nd and I am doing pretty well.  There is still some minor funky swelling.  My left knee is better and the right knee is improving, but I have some new swelling in my right hand.  Just a reminder to mind my P&Q's and get consistent rest.  I am getting to work everyday and come home tired - but not as tired as even a month ago.  Dr. McKee is in my head telling me how much better it gets over time...
My mind at times still has those weird chemo brain moments especially when tired or overdoing it.  I gave Bill (and me) a good start this weekend when I took a misstep.  Doing a few chores I took a dive in the garage while going in and out of the house.  Couldn't remember from one minute to the next to watch my step???  Seriously frustrating, but just a skinned knee.  Nothing a quick shower, bacitracin, and some gauze from my inventory couldn't take care of. 
Thank you all again for all the well wishes, the checking in, the cards, emails, calls, hugs, kisses, prayers and great vibes.

Checking In After Checkups

I had multiple appointments this week.  Drs Howe, Turer and Mckee.  Sometimes I can't believe it all still.  I've felt mentally challenged lately and they are all good spirit builders.  Dr Howe checked me out for why my knees are building fluid - labs are clean and xray is good - just patience and ibuprophen.  Dr Turer checked me out to remind me why my lady parts aren't happy and what can be done about it.  Dr Mckee gave me my two year check up post original mastectomy - laughs, computer/smart phone talk with Bill and thumbs up and hug for me.  The date I want to celebrate as cancer removal day is actually August 20th.  All in all each day is a celebration.