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. 

A Great Day

Heart of Tiramisu by Taylor

 Last night I finished my last dose of antibiotic.  Today I finished my last day of Leave of Absence.  We went to Ronaldo's for a light dinner tonight for Taylor's last night of summer work as prep cook.  He made the Tiramisu - decorated for us with a heart.  Off he goes to Ithaca tomorrow for his last year of college.  Jeremy is in Boston doing well.  He'll start his classes again soon too.  I've got the Bill guy by my side and my medical puzzle pieces seem to be coming together. My heart feels good.  I thought the puzzle completion would happen for January 1st but I'll take August 1st!  Off to bed for me - August here I come!

Ramblings From Another chapter

Mt. Kineo from the back side.

 So many things going on in my head and life.  Still healing on the right side but it does look good and for the first time in many months.  It looks like this surgery did the trick.  I am on my last bit of antibiotic and will be glad to be done with those drugs.  Wow.  Ive had some kind of antibiotic  running through me since my lung infection last August, plus I hadn't even finished chemo in August.  Holy pharmacy drive through! 

We took some time off last weekend for a long weekend.  It was to celebrate Taylor's 21st birthday and Jeremy's 23rd birthday.  We went to Moosehead Lake and stayed up in Rockwood Maine.  It was just the piece of heaven we needed.  Stayed in two cabins on the lake with our dear friends, Janet, Bob, their kids Brad and Abby, and Sheila and Linda.  Three moose sightings, a bald eagle, and a large buck were some of the highlights.  We were also able to connect with our friends living up there Judy and Gary.  With their son CJ, wife Elle, and grandson Parker there all 14.5 of us had dinner together one night.  Good food and great company.  That's the stuff that keeps me going.  Live, laugh, love. 

I'm sure you've all heard the Hep C concerns at Exeter Hospital.  I've never been in the cath lab and certainly I asked the questions that any patient should.  We'll see if the State changes again and schedules testing for patients like me. The staffs have been amazing in the face of such a crisis.  Prayers for all those involved and impacted.  Life changes in an instant. 

Dr. Hammond retired this week.  So hard to even write those words.  Bill and I hold him very close in our hearts.  As my oncologist he spent many hours talking us through the impact of all the chemo and ancillary drugs.  Many hours talking about getting to the other side of all of this.  Many years providing superior care.  Off he goes on his sailboat to only have to ponder the next slip or mooring.  A well deserved new chapter for he and his wife.  Blessings and peace to them.

I'm just going to keep doing my best to stay ahead of the leftovers of treatment and surgeries.  I'll use all the great karma you all send my way.  Still fortified by lots of yogurt and all of you!

And Others

Dear Aunt Minnie lovingly cared for by her Bill.  They told her she wouldn't be here now but she's not having any of that.  I got to see her just before they took off for a well deserved get away to Florida. xoxo  We just met Pam and Brad.  Pam has had her brain tumor operated on and radiated and she awaits the perfect chemo cocktail.  Aaron's dad with lung cancer.  Real stories of really great folks. 
I posted the picture of my great gun because it's another symbol of the fight.  Plus it looks way better than Brad's.  (Inside joke, but he knows it's so true!)  I got to take the bandage of the picc line area and it feels so good to not have any bandages on that arm again.  Off to Dr. Marble tomorrow to get the weekly once over.  I need a thumbs up so off to bed I go. 

Others

My thank yous for your support are sincere and so deeply heartfelt.  Bill can tell you how the most simple memory can bring me to tears.  I mean the good tears.  The tears that release the grasp of those thoughts of cancer and having it control ones life.  As you know I've had a hard time getting my thoughts put into print again, but by no means does it reflect what has been going on in my heart, my head, my prayers.  I hold oh so dear Denise and Belinda who faced concerns over their lady parts. xoxo  Both faced surgery, one faced radiation after.  There is dear Dr Marble who just lost her beloved father-in-law to bladder cancer.  For Kelly who had the worrisome, but thankfully benign breast lump.  For Gail's stubborn Don with a worrisome lung nodule.  So many people to fight for, pray for, support, love and just be there when needed.  May the power of the fight but far reaching and ever powerful.  Thank you all so much for fighing, praying, and supporting right along with me.

PICC Line Gonzo

I needed  a check up with my home care nurse last night.  When getting ready for bed I took off the cloth  picc line cover to see that the skin at the entrance was bright red.  Hadn't been that way earlier.  Carole is a peach and had been the primary nurse during these many weeks.  Luckily she was on call.  She wanted to confirm the sterile hadn't been breached.  As she says many times the body is just telling you it's time to take out the line.  Today after multiple coordinated clinical calls another nurse was sent back out to pull the line.  Now my temp needs to come down and stay down, all wounds need to heal, close up tight, and let me enjoy the remainder of the summer. 

5 Days later

Well as you know I've been laying as low as I could.  It seems - so far - that did the trick this time.  Met with Dan Lynch, PA who was covering for Dr. Marble Friday to get another follow-up.  Dan's a good guy who is generally in the surgical suite with Drs. McKee and Lee.  He sat in on my very first team meeting two years ago.  My incision is in good shape leaving the running stitch in for now.  Keeps me buttoned up good.  No showering, but I've got that routine down to a clean science.  I still have the picc line, 37 days and counting.  Dr. Lee wanted to make sure my surgical cultures came back clear before removing it.  Dan confirmed one of two was clear and was a final result.  The second has no growth but was not considered final.  I'll get the second culture confirmed this week with another check-up.  I'm still oh so sleepy and hit my wall pretty early.  I feel like my physical challenges are improving slightly being off the Arimidex.  Hard to tell what's what still between drugs, infection, surgery, and recovery.  So more patience is required.  I feel like I've really been out of it quite a bit since my mastectomy in November.  I can hardly believe this year is already half over.  That'll have to be my positive for now.  2012 is not what I thought it would be that is for sure.  Thank you all again for your love, support, hugs, kisses, emails, cards, calls, food, thoughts and prayers.  You all still fortify me every single day.

Number 6.

Well, an anticipated leisurely 1PM start time turned into a 9 AM mad rush for her sixth installment of Nip & Tuck at Exeter Hospital. Since we both sort of know the routine now, it wasn't as bad having to start six hours earlier than expected. The other good news was that Tracy wouldn't have to go almost 12 hours without food or drink.
All went as expected and Dr Marble expressed her pleasure in not finding any additional subcuteaneous infection. Tracy was up and about pretty quickly in Recovery and we are now having a post-op mid-afternoon breakfast at Steve's Diner, just down the street from EH.

Seriously...

Heading back to surgery Monday.  6 surgeries in 2 years.  I've needed them all and that's just the way it is.  My culture came back this week positive for a 3rd different growth.  I'm a quandry evidently.  I didn't read the report this time.  I just listened and planned with Drs. Lee and Marble.  Dr. Lee told me the daptomycin won't work for this one so I got a new oral drug last night.  Picc line still in but suspended for now.  I'll flush the line each night to keep it in good shape for Monday.  I'll see both doctors for a follow-up on Tuesday.  Monday will be a quick day surgery and they can use the picc line for a light IV sedation.  Dr. Marble will do a revision to the right side taking away some of the radiated skin and hoping to get a better connection to the good parts.  That's my positive, there are lots of good parts.

Diesel Dog Day

Today is the first day of summer.  100 here at the house.  Longest day of the year in a number of ways.  My diagnosis changed many many things.  One of them is Bill's science/mechanical hobby with the veggie diesel has come to and end.  The benz's served us well and off they went today to the big scrap pile near the river.  With Bill as my amazing caregiver I've needed attention that has diverted him from a number of activities and life moments.  He's back from his trip with me still running full tilt with the picc line.  I'm 28 days in and holding my own.  Had a visit with Dr. Hammond in oncology yesterday and asked to be taken off of Arimidex.  It has really been challenging and once my body leveled off with it, it hasn't been so even keeled.  My body hasn't functioned well, and when the temp drops even slightly it makes me stooped over, often with tremors if chilled.  I've had an awkward gait, burning hips while sleeping, cement on my eyes in the morning, and emotional lows - just a few of the crappy side effects.   I do have other options for other meds.  I'll get a break from this for a month or so and have another discussion at July's appointment.  Meanwhile I had to see Dr. Marble right after oncology.  The pesky right side is still uncomfortable.  Bill poked me by accident the other day and I almost gave him a startled response of an elbow square in his face.  Dr. Marble and Sue gave me the same pep talk as Dr. Hammond.  I'm doing well, been through hell, and they will support me all the way through to a healed right side.  Drs. Mckee and Lee tell me the same.  More labs, another wound culture, and more nursing home care.  I am again regrouping mentally as I certainly thought I would be well beyond this point.  That is what I'll use summer solstice for - mental purge with beautiful summer weather.  I welcome any warm weather and look for me to be walking upright!

Deep Water, Low Bridges, Heavy Heart.

It seems hard to believe that almost two weeks have flown by, but they have.  My 3 Hour Tour ended up being almost 9 days in duration, with many hours of calm interspersed with minutes (and hours in some cases) of large electrical storm activity with nowhere to hide.    

The worst thing though, had nothing to do with the weather, Gulf Stream, or Cape Hatteras (damn that Cape Hatteras).  It is that Tracy and I were unable to talk for days at a time.  That may not sound like much, and some may even think “well – I’d *love* to not have to talk to <insert name here> for days at a time…”, but I have to tell you – it was hard to have that last conversation while watching the bars on my phone go from 5 to 3 to 1 to an “X” in rapid succession.   It was equally as uplifting to power on the phone when coming into shore and to get at least some indication that it was able to hear a tower.

I won’t ramble on too much, but did want to share a video Dolphins! I took somewhere about 150 miles or so off the coast of Delaware (or maybe New Jersey – I forget).   These dolphins took what appeared to be great pleasure in using our bow pressure wave to play.  They stayed as long as we were watching, and as soon as I put my camera down and moved back to the cockpit, they left as suddenly as they arrived.

Chinese Meds 2

I am hunkered down and doing drugs, getting sleep, eating well, and generally resting.  I stopped the two oral drugs and I just have to continue with the picc line until Dr. Lee says I'm done.  I'll see Dr. Marble tomorrow to keep an eye on the wound and Dr. Lee on Tuesday to keep an eye on the internal bubbling of chemicals.  The home nurses have been great and hopefully a trip to my house is the easiest challenge they have as they care for folks.  Once again I hold dear all the things that are going right.  I don't need infusions every 4 hours.  I don't need dressing changes daily.  I don't need any other tubes attached to me.  My head is still very full so I am back to chemical sleep aids.  See I'm cutting myself some slack.  I will get to bed early and keep putting one foot in front of the other for the new week.

Eve Of Friday

I saw Dr. Marble and Sue this morning.  They gave me the once over.  My right side is still progressing in a better direction.  Obviously this will be slow, slower, and slowest.  So that is where my mind has to be.  Cultures came back with micro growth for GI stuff, which so far, anything trapped in me just moves quickly through my system, and hence the picc line necessity is yet again confirmed.  Not that my fevers, tremors, and bright pink boob didn't confirm that fact.  The Infection Fairy just loves to give me many many clues for each event.  The multiple items on the infection checklist I could do without.  I turn myself in.  I am still more freaking compliant than anyone I know.  Ok so I'm a little past my bedtime but I waited up to talk to Bill.  Signing off now for lights out. 

Wild Minded

Everyone tells me to give myself a break.  Now if you could just convey that to the Life God of What The Crap.  I went off the grid because I have been struggling mentally with all that is in my head.  I used the blog for my purge before and I need to get back to that.  I heard in the movie Julie & Julia that a blog is really self-centered, so it must be true.  Honestly don't care.  It's my blog and like everything else in life we don't have to tune into anything we don't want to.  I just have to be tuned into me.  That part I'm good at and it has saved my sick behind many many times throughout this fight.  That's what I need to keep in mind.
I've had a number of fellow patients ask me what's up...  So it weighed heavy on this wild minded mind of mine if I wasn't positive thinking.   The reality of it all is I have been running full tilt since my mom went into the hospital a week before my second mastectomy in the fall.  I think about all the others who are far more sick than I, did not survive, will not survive.  There are children taking all this cancer treatment, and soldiers and their families forever changed by service to our country.  I do have perspective.  I just have a really hard time giving myself permission to be sad, frustrated, mad..  I am deeply, achingly, sad that my body is too fragile to make love with the man I love oh so dearly; frustrated that each good step forward has had some mind screaming setbacks; mad at those who take advantage of a really good life and not take care of themselves.  Yes - that even meant my own mother.  So I've been continuing to be resolving all this in my head. 
I'm here and back at it each day.  My second picc line is intact and functioning well.  The home care nurse will come tomorrow night (Wednesday), my dressing will be changed, and my lines will be flushed with another dose of antibiotic.  I'll see more of Drs. Marble, Mckee, Lee, Proulx, and Hammond these next few weeks.  They are all good for me and help to keep me propped up in the right direction. 

House of 'Cin

Fun day today.  (Not)

As mentioned in my last post, Tracy has been running a little hot the last few days, and well – she got really hot and bothered today along with being shaky and crooked.  She had gone in for a quick looksee by the docs, and I got a text about an hour later saying “Not being admitted, but am getting another PICC line..”.  

 Crap. 

Well – the good news is – looks like they were able to get ahead of this one, and for the next week or so, nightly at-home infusions of saline, Daptomycin, saline, heparin will be the drill. 

Oh – and she’ll keep taking the already prescribed clindamycin and ciprofloxacin.

Hot Babe in the house

Sorry everyone – it’s been a while.  Lots of things happening, some things good, some things not so good. Tracy’s been on track since her last surgery in November, with one revision to clean up a persistent gap in a seam.     We’ve sort of been meandering along for the last several months, and a few days ago, she started not feeling so great.  It started out as a soreness in her right side a few days ago, and progressed downhill from there.   Well – after she spiked a 101 temp,  a trip to Exeter Hospital ensued and we're sure she's back on the path forward.    Fortunately, no inpatient spa trip this time, but instead a massive dual-dose cocktail of antibiotics to take for a few weeks.  She is pretty shaky this evening, but with a double initial dose of her meds and one of my custom greek yogurt orange blueberry mango smoothies she should be back in shape in a day or so.  For now, laying low is the prescribed course.

Add on top of that my pending departure.  No – not what you think (or hoped?!?).  Since things were going soooooo well a month or so ago, I took a couple up on an opportunity to help them deliver their a sailboat (a Cabo Rico 45) from south Florida.  I fly out next Thursday morning at 6:00 AM, and arrive in Vero Beach mid-morning.  We get the boat provisioned, fueled, watered, and then leave at the crack-o-dawn on Friday morning.    Our plan is to head out several hundred miles, catch the Gulf Stream and sail up just about 75 miles or so off of Cape Hatteras, then bear left up to Rhode Island.  All things being what they should be, we’ll be out to sea for about a week working a 4 hour on, 8 hour off watch schedule around the clock with the afternoon watch shortened by 2 hours. And – I'll be off the grid.  No cell, no internet, no email, no twitter, no facebook.  Wahoo.   So – keep an eye on Tracy for me.  She can’t be trusted.

Healing

Well it's been a challenging couple of weeks.  We buried my mother just the other day and we'll continue to support my dad as we march down the path of life.  He is doing well.  He is swimming three days a week again and is progressing with making his new normal. 

I have continued with wound care.  Each week has brought me a little closer to no open wounds.  The picture is of the ointments, bandages, and skin care liquids that I have broken out  twice a day.  The wound on my right stalled according to Dr. Kelly on Monday.  By now if you have followed along that means I get a trip back to someone else.  I saw Dr. Marble yesterday.  We talked briefly about more time taking care of the wound or being in a place to get the revision.  Wound care did well by me as it brought me forward enough to not end up in the OR again.  Dr. Marble thought a couple of stiches and I'd be on my way - or would I like to think about it and come back another day with Bill?  Nope had my boot straps pulled up, took the local numbing shots, and 4 stiches later I was done.  My wound care is a little different for the stiches, a simple process of bacitracin and clean dressing.  I can have a shower tomorrow and back to see Dr. Marble on a weekly basis until healed.  All good stuff. 

My Mother's Passing

Well it was true Hyder Family Hospice House was the place my mother needed to be.  It was the place my family needed to be.  A person fully involved from head to toe with cancer needs folks who understand the way to care for them.  They care not just medically but also whole heartedly.  The staffs who work there have a special calling to work only with folks who are facing the end of life.  As one of the families that faced end of life with a loved one it can truly be said that it was made easier with their help.  They provide dignity, compassion, and caring right through the process of the loved one leaving the building.  We were so fortunate to have our mom as long as we did.  She lived a good life with a great man and a great family.  Can't ask for more than that.  We know she rests in peace.  Thank you all for your love and support.

Well What Do We Have Here?

Oncology has told me to watch out for accidents with my hands and feet from the neuropathy.  I was ironing the other morning and never even knew I had burned myself until I was washing my hands and noticed a large welt.  It certainly surprised me.  I (and Bill) have kept a very close eye on things in general regarding my neuropathy.  I have essentially felt the side effects with my walking, some balance issues, and the pins and needles.  Oh the pins and needles.  They can seem endless some days.  And as I have written the cold makes me feel like a stooped over old woman.  I have some tricks left in my little cabinet and have put my leftover Calendula Gel into action.  I started applying twice a day for the burn.  On the mend for the hand!

 I'm super tired as the last two days have been most stressful.  My mom still had uncontrolled pain and we were able to connect with the Dover Hospice group who are more connected to the Dover facilities.  The Hyder Family Hospice House had a bed available yesterday and they were able to arrange her transfer last night.  She was in terrible pain and the team went to work to get her cocktail just right.  She needed to have a morphine pump inserted into her back.  She was resting much more comfortably tonight, but not able to communicate.  My sister told her she had been snoring as loud as my dad and she smiled ever so slightly.  We pray for mercy and a speedy passing.  Thank you all again for all the support.

Pull A Rabbit Out Of My Hat...

No... just a need for pulling out something from the good vibes bag that my sweet cousin Janet put together for me.  It's been a quick week since my last post.  A difficult one.  My wound care is going well and I will continue with Dr. Kelley for a few more weeks.  She switched out the type of gauze I use over the ointment to a moist gauze to keep the beautiful little skin cells happy with regeneration.  If it's too dry it makes it too hard for them to come together.  One has to find the happy medium of not too dry and not too wet.  Your skin can't looks like you just took a nice long tub.  They of course use terms like "we don't want your gauze to migrate" = move around; and "your skin should not look mascerated" = too white & prune like after the tub.  This week was particularly challenging as my mom had a bad episode with pain and needed to be placed in a facility to help control it.  She is currently as Rochester Manor.  It was shocking to find that when she needed a bed one could not be found unless we wanted to her to be placed an hour away in Concord NH.  NOT feasible.  Childhood friend Jenn Manning to the rescue.  I called her and she helped us wrangle it all together.  God bless Jenn.  Thank you again for reaching out to us.  Your notes, emails, cards, calls, visits, hugs, kisses, and always the good vibes keep us well supported.  It's truly what is needed. 

Got Another New Doctor

Dr. Kelley and her nurse Joanne at Wound Care - I added another two great people to my list of a wonderful medical team.  I started at Wound Care on Friday morning.  A very thorough initial visit.  I left with a new ointment to touch up my right side.  The open area already looks dramatically better.  Dr. Kelley had the results to the culture that Dr. Marble took on Tuesday.  Came back positive... but the antibiotic Dr. Marble started me on is the key to the type of infection that I have.  My system is still off, and I can barely keep my eyes open at this time of night.  Slowly I heal, but heal I do.  I am still making sure I can maintain my balance between my health, work, home, and my mom's current status.  Her cancer is progressing rapidly into her brain and bones this past week.  Taking one day at a time for all of us.

The aforementioned Sunrise :-)

Does Working Out Make You Cry?

I got released from medical suspension to return to the gym.  Do you groan over that thought?  Ok so many of you really know me - I am a major weeper.  I was happy teary on the way to the gym Saturday.  Returning to the gym with Bill was wonderful.  It was a place of tremendous support for me during chemo - attending the Well Fit program.  We joined they gym after the program ended for me.  I feel better when I can go.  There are so many variations on what I can do, even when struggling with meds or fingernail-less hands, or no hair chills.  With this wonderful warm weather it is a double deal for my body.  Getting to the gym to get back some tone and stamina, and wonderful warmth makes for a good start to the day.  Thursdays and Saturdays are my days right now.  I hope to add more as I get the right side of my body healed.  Bill and I got to the gym at 4:55a.m. just waited a minute or two for the doors to be unlocked with a crowd of others.  We got our routines done, went to the beach bagel shop for coffee, and headed to the beach for sunrise.  Great day.  Hope you all get your cogs turning today.  Enjoy the day!

Is There A Sale On Antibiotics - Nope!

Saw Dr Marble and Sue yesterday.  Got myself another antibiotic for another 14 day course.  I haven't had any fevers lately, so that is very good.  I record my temp a couple of times a day.  Still trying to get the small area on the right side to finish closing up.  I am going to go to Wound Care and meet some new people.  Dr Marble took a small sample of tissue for culture.  My fingernails are still receding, and my hair is thinning slightly again.  Not at all like the chemo shedding, just my body putting energy toward healing my right side.  Both will spring back in late spring early summer no doubt.  I am still sleeping pretty well without chemical aide. I need all the sleep I can get while life remains a little challenging.  My mother remains stable as we work with hospice.  She has a Fentanyl patch that has really helps keep her pain managed much better than just traditional pain pills.  I am doing my best to stay well.  Thank you all again for your cards, emails, hugs, kisses, prayers and great vibes.  As the saying goes there's just no planning for life.  Onward I roll.

Oh The Warmth

My body still rejects the cold.  It turns me into a hunked over slow person.  I crave the warmth.  I still use a portable heater in the bathroom and that's with the house heat still set to 70.  But you know what?  You do what works.  Part of the flex theme...  My body still has the purge going on - from chemo -  my setback with infections, and a long time on the high dose antibiotics.  My fingernails are receding again.  My hair remains baby fine.  I'm tired, but sleeping well.  Haven't used chemical aid on that front in weeks.  Believe me, with all the drugs that have been in my life, there have been many days I felt I'd always need them.  I was assured I wouldn't need them always and to be patient.  It's so hard to be patient while battling, healing, fighting, healing, accepting, healing, finding patience, and healing. 

Jeepers Creepers Where'd We Get Those Peepers?

Not the optical ones but the wonderful ones down singing in our ponds.  First night of peepers and it is my favorite part of spring being on the horizon.
I went to Matt's service last night and that was so very hard.  I must take it all in that there is renewal and I am part of that.  I am still fighting to keep myself healthy.  Bill and I have our eyses on my right side still.  I am eating well with all my liver loving foods.  It pays to be good to your filter!
I am trying to protect my mental self while facing my mother's illness.  Her pain increases daily, and I am learning with the help of the hospice nurse how to tweak her pain medications to find the needed formula for each day.  It will flex many many times.
That is what I will do - flex.  One day at a time.

Snowy Saturday

Getting up early today.  Thinking of Matt who passed yesterday. May he rest in peace.  Just 43 years old.  It is another reminder to live a good, happy life.  Today we'll pick up my mum and dad for dads 82nd birthday, head to Newicks and get some lobster.  Mum wanted a date night tonight so told dad where to get the tickets for Dancing with the Dover Stars!  It'll be held tonight at Dover High School and they'll have a great time.  Behind the scenes hospice is checking in and giving updates about what to do next.  I'll touch base with my siblings today.  For me it was a busy work week, but I have a slight hot spot on my right incision.  Seemly came out of nowhere.  Just keeping an eye on it until next week when I check in with Dr. Marble again.  Both Bill and I are tired.  He's still sleeping, just letting his catch up a bit.  He helps keep me going in the right direction on the days it can be challenging.  The day is already getting nice and bright as I write this note.  Time to get off the computer and get on with a good day.  Enjoy the snow scene before it's stepped on or plowed over!  It sure is beautiful out there.

Another Powerful Tuesday

I have put peaceful vibes out each day for those who still struggle.  I just heard today that another's beloved mother lost her battle with lung cancer last Tuesday.  I am looking forward to the full moon this Thursday to change the vibe.  I need the power to go WITH the battle. 

I got a good check-up this morning with Dr. Marble.  Sue took my fishing line out (stitches) and things look good.  That's a start.  I was calculating that I have had over 64 days on antibiotics since November.  34 of them on high dose, kick ass, drugs.  Using the powerful meds to go with my mind, and go my way.

Under the sun, the moon, and the stars is generally a beautiful place to be.  Keeping my eyes to the sky this week to keep my pull directed at the force of life that supports the positive.

Power In The Universe

I knew there was a reason Tuesday seemed so powerful, Matt cannot receive anymore treatment, Joanne lost her 5th battle with cancer, and my mom was diagnosed with metastatic lung cancer.  It has been an emotionally draining week. 

Bill was in San Fransico for a conference and wasn't due back until Saturday afternoon.  He came back early on Friday to surprise me and as always provide emotional support.  Just a hug from him makes me feel better. 

My brother, sister and I met with my mom and dad yesterday to go over all the results of her past two weeks of testing.  Even though mom has been a life long smoker it was hard to hear the words.  In addition to her cancer, she was also found to have a "catastrophic aneurysm" in her aorta.  Her cancer is so advanced there will not be any further medical intervention. 

The family hopes to keep mom at home as long as possible.  She has numerous allergies to pain meds so we will be looking to the medical team and hospice to come up with the best cocktail for her to keep her pain free.