Thunder rolls...

Sitting in my living room listening to the thunder rolling in the storms this afternoon.  Yes, it still hurts but its definitely better today!

I made it to see Dr Johnson, the radiation oncologist, this morning.  He had a really goofy but sweet resident with him this time who was very personable.  They had conferred with Dr Keedy & decided to start radiation concurrent with the second cycle of chemo (first week of April).  They will do the simulation CT scan on March 20th.  Basically what they do is use a CT scanner to create a 3D model of my body; they explained that everybody has organs in slightly different places so they have to do it individually in order to assess where the radiation should be directed.  It also allows them to better assess what side effects will be based on what organs will be hit with the "scattered" radiation.  They figure I will probably have some bowel irritation, skin irritation, and possibly muscle weakness from my radiation, but these side effects are reportedly very minor compared to those from chemo.

So, I had a bit of a revelation today.  I went to the hospital looking like a cancer patient for the first time.  I had on my sweats, my flip flops & a hat.  No makeup, well I never wear makeup so thats not different.  I have a headache, I feel fat & a bit nauseous today.  But you know what, I wasn't upset by that for the first time.  Instead I found myself smiling at everybody I saw there and genuinely feeling okay with myself.  This is a year of my life that is going to be difficult but at the end of it I will be back to myself.  I will be able to get myself back in shape, eat properly, etc.  In the meantime I am NOT going to beat myself up, I am going to treat myself nicely.  I have so much to be happy about - I have the most amazing family on the planet, I have wonderful friends who are working SO hard to take care of us, I have the best doctors in the country, I live close to the most amazing medical facility, and I caught this damn thing early.  So why not smile, why not be nice to myself?  Why not embrace the next year and smile thru it?

Don't get me wrong, I know I won't feel upbeat every day of this journey but I want that to be my default position - where I come back to.

Today's photos remind me of Maryann, my Dad's wife, my kids' Mimi.  I took these 2 pictures at the Naples Zoo last spring.  I love the vivid colors of these birds.  I love how I was able to have the bird in perfect focus and the background not.  Its my favorite way of taking pictures.  Mimi & my Dad took us to the Zoo that day - we had a wonderful time.  I took tons of photos that day; I think we saw every animal in the zoo and we each had a different favorite.  I also took this one that day - amazing lion who was sunbathing.  My photography teacher would be disappointed I didn't eliminate all the fence lines - I probably need to go back & take another class so I can remember how to do that!

Anyway, there's no real message in these except they are happy, powerful pictures that resemble how I'm feeling today!

And now its pouring rain here!





Just Tylenol? Seriously?

So, I'm not sure if they lied to me about the level of pain from this port placement or if I just thought I was tougher than this.  Wow, I didn't sleep last night - the pain was unreal.  This morning Kendall had to help get me dressed - I don't believe that has ever happened before. 

Dr Keedy told me to take Lortab for the pain so that has gotten me thru the day.  I have pretty much been sitting in the recliner ALL day with the blanket Stephanie gave me.  As long as I sit still and type or write, I'm good.  If I get up & walk, holy ouch.  So much for getting back in the office.  The good news, though, is that I did get a lot of work done since I've been chair-ridden.

It was another gorgeous day here today - Payton is at the park with the kids.  Cross your fingers I can be a little more mobile tomorrow.

Today's photo therapy is from the archives.  The first is a picture of my Uncle Richard (my Mom's brother) and I hiking in Northern England when we visited them in 2008.  That is Eri on my back - hard to see her.  The second picture is one of the many picturesque views in the Cumbria.  I love these pictures because they remind me of such a fabulous trip.  We spent spring break in England with Uncle Richard & his wonderful wife Auntie Anne; the girls were so young then - EB was 7 & Eriana was only 18 months.  They have wonderful cattle, lambs, pigs, ducks, and chickens on their farm; both girls just loved feeding them in the mornings & at night.  Anne is a fantastic cook, and they treated us to some delicious meals while we were there.  This is definitely one of the first places we are going back to when we are doing beating cancer's butt.

My Power Port



A port like the one I have in my chest

 Happy to report I am now the proud new owner of an Xcela Power Injectable Port.  Its a super cool thing, really.  No more IVs and, at Vanderbilt, they use it to draw blood too.  And, because I have a "power" port, then it can be used for contrast for MRI and CT scan as well.  Nice.


A room like the one I was in today

 The procedure to place it was actually really neat.  They have a whole radiology care unit like a pre & post op area.  I had great nurses once again.  Got an IV and an EKG, signed the consent, and then got wheeled down the hall to the procedure room.  The procedure room was like a space center.  Lots of monitors and big machines, cabinets full of catheters of various sizes; they were hanging in these cabinets like pants in Nordstrom. 

I got to do my famous "crawl" from the wheelie bed to the table in the room.  I'm pretty good at that now, only show my hiney to half the room in the process, instead of the whole room.  The nurses and radiology techs in the room were fabulous; it was freakin frigid in there!  They actually had a radiology tech student with them today so I got to learn a lot in there too.  They ultrasounded my neck on the right side to make sure the vessel was good.  It was so they prepped the area, draped it with the sterile towels then gave me the versed.  I recall bits & pieces of it - like the Dr telling me they were injecting lidocaine or telling me they were almost done, etc.  I remember them taking the drain out - which hurt but only for a second & I am so glad that thing is gone!  Anyway after all that, I climbed back onto the wheelie bed & off to recovery.

They let Kendall come to the pre-op & recovery area which was really really nice.  The procedure itself took about 90 minutes but the prep & stuff took another hour or two.  We were home a little after 1.00.  It didn't really hurt at all until about an hour ago.  Now its pretty tender & very bruised.  My neck, right arm & shoulder are stiff too.  Hopefully I will be able to sleep okay tonight & go to work in the morning.  I can't do any vigorous exercise or lift anything more than a gallon of milk for 2 weeks!  Not that I'm able to exercise vigorously anyway.  They say the scar tissue that develops around the port actually helps hold it in place & doing too much with your right side before the scar tissue is fully formed may make it tilt which makes accessing it difficult.

So I'm happy this step in the journey is complete.  One step closer to a cure!!  It was another beautiful day here today - mid 60s, bright blue sunny sky.   This week Emilia & I need to sit down & figure out her plan for the summer - camps, etc. 

Photo therapy for today...  One of my dearest friends - Corina, her adorable daughter, Marissa, and Emilia & I in Washington DC last May.  Cori & I were roommates for most of our last 2 years at West Point.  We went thru some things together that will bind us together forever; memories and shared experiences like we have are superglue that has dried between us & created an impenetrable bond.  We don't get to see each other all that often these days; Cori is in Germany for a while where her husband, Eric, is stationed.  You know how it is with friends that you don't see that often -- when you do see them its like you haven't missed a second.  And when you don't see them, you can still feel every second that they are thinking about you.  Whenever I think about Cori, I can feel her long thin arms hugging me & feel her unconditional sisterly love.  I love you, Corina!

 

Boots....

Kendall bought me an awesome pair of cowboy boots for Christmas.  As I struggled to get them off, I remembered as a kid my Dad had made me a "Boot Jack" for getting my riding boots on & off.  So I searched everywhere for a cool Boot Jack.  Finally I ended up on Etsy & found some awesome hand painted boot jacks.  I ordered one & love it.  Ordered another for Lorraine's birthday.  Then someone said, You could SO make these.  And we were off to the races.  Here are most of the ones we have made so far - as you can see each one is completely unique.  Emilia was wondering how we could start a business selling these bad boys...  We're taking orders if you want one; the blog comment system doesn't seem to work too well for some people so email me directly or send me a facebook message with a description of what you would like!  Just be prepared that what you get will be one of a kind & may not be exactly what you had in mind...  The price is $40 each, that includes shipping.  Delivery time, well that depends on how bad chemo kicks my butt.  Lorraine's boyfriend, Ben, is going to put a few on the floor in his store - Backcountry Experience, Durango, CO.

I have to say how much I absolutely LOVE making these with Emilia.  It allows us to do something together, be creative, express ourselves, chat while we're doing it.  It is without question one of my favorite things to do - to be creative with my babies.  In fact, if there is anything I'm looking forward to in the next several months, its that I will be around more to do these type of things.  Granted, I may not feel like doing it, but it really isn't very taxing to sit at the kitchen table & paint.  I'm hoping against hope I don't lose my desire to do this stuff or my ability to do it.  Granted the ability part could be questionable, especially when you look at the "preschool mountains" I painted below, but beauty is in the eye of the beholder, right?

"americana"

"peace"

"eriana"

"preschool mountains"

"daisy palette"

"payton"

All of our creations.  Many aren't quite done...

So, Kendall & I had a wonderful surprise last night.  We finished our delicious dinner at The Palm & the manager came over & said our meal was all paid for.  My sweet Dad had a long conversation with the manager yesterday & gave him his credit card to pay for our meal.  It was a wonderful treat and a priceless surprise.  The manager told us what a nice man my Dad was & that they had chatted for quite a while.  Thats my Dad.  After that we went to Shen Yun at the TPAC, an interesting Chinese variety show of sorts.  We had a nice quiet breakfast this morning & then headed home.  Believe it or not we missed the rugrats after just a few hours.  I haven't been away from them for a long time since I haven't been traveling.  Could definitely get used to not traveling.

It was a beautiful, sunny, warm day here today so I planted a ton of pansies which the kids & Kendall played in the creek building a tree house of some sort.  I'm pretty tired tonight but in a good way.  Our sweet neighbors, Miss Betty & Mr David, made us chicken spaghetti for dinner.  I could definitely give up cooking (or at least forget how to cook) by the time I'm over with this ordeal.  I did make the girls' favorite Coffee Cake this afternoon as well as a casserole for tomorrow night & one for the freezer. And yesterday Emilia & I had JAMs Jams in full production mode; by 10 am we had made 3 batches of our famous and coveted strawberry jam as well as a batch of fresh blueberry scones.

We'll be off to Vanderbilt in the morning to have my port placed.  Hopefully we will be home by noon or 1 pm.  I'm sure I'll be pretty loopy in the afternoon tomorrow.  Tuesday is back to work, all the way until next Tuesday!  Hooray.  Hope all of you have a wonderful week!

Too good to be true?

Another afternoon "wasted" trying to biopsy something that evidently is not really there.  I'm a little frustrated, a little confused, a little mad, and a lot relieved at this point.  I spent 90 minutes in the MRI scanner this afternoon.  Anybody ever had a breast MRI?  To say the positioning is uncomfortable would be an understatement.  I got not one, but two, doses of contrast.  I'd say they took several thousand images at least.  They couldn't find the masses that worried them on the MRI three weeks ago.  MRIs are very sensitive to changes in your body, even to the time of the month that you have them done, so there are a lot of reasons why this could be.  One, of course, is that they weren't "really there" in the first place.  I don't much care about the reason right now.  I do care that I have lost a week waiting for this damn thing to happen.  I have lost God knows how many hours of sleep worrying about it.

Anyway, at its surface this is good news.  Thankfully 2 of the chemo drugs I will be on are also used with breast cancer so if nothing else they will keep things stable for the next 9 months.  They plan to do another MRI in about 6 months & see if there are any changes or if the masses "reappear."  Meanwhile, Dr Vicki is planning on Tuesday, March 6th as "Go Day" for chemo.

Next week I will have the port placed on Monday; all being well they will also remove the drain during this procedure.  On Wednesday I will see the radiation oncologist again, my favorite Dr Johnson.  Without a drain & with no findings in the breast, I am expecting him to be ready to get started on radiation.  Thats it medically next week.  I get to work 4 out of 5 days next week all being well!

I'm excited for our dinner tonight, Julie B made us chicken & rice which is warming up in the oven now.

We had a little death in the family tonight.  Emilia was cleaning her fish tank & one of her little fish (they are named Paul & Linda McCarpney) didn't survive the event.  So we will be getting a new Linda tomorrow.

No photos tonight, I'm not in the mood.  I cannot get rid of this splitting headache again.  Hope everybody has a really great weekend.  Look for our "Boot Jack" post sometime this weekend.  Emilia, Kendall, Eriana & I have been working on some projects.  We're also going to concoct some of the original JAM's Jam Strawberry Jam this weekend.  I have managed to completely misplace my big pile of JAMS Jam labels - and I haven't even started on chemo brain yet.  I'm calling it Pre-Chemo Brain!

A Great Day

I'm happy to say today has been the best day of this journey so far!  Not only am I finally feeling pretty much like myself with only a tiny bit of pain, but I didn't have to see any doctors today.  And I got to spend the morning learning about cancer and chemo from my good friend Karla.  So all around, I'd give today an A+ and I give Karla and her chemo buddies an A+++ for being so friendly, so informative, so willing to answer to my dumb questions, so helpful.

Yep, I feel great today.  I even went for a 25 minute walk when I got home from work.  That is the same exact route that took me over 40 minutes to do last week!  How awesome is that.  I'm enjoying not feeling in pain right now, not feeling bogged down from the after-effects of anesthesia.  Its wonderful.

My experience with Karla this morning was so powerful.  Karla was so encouraging, so open with me.  She shared all the inside information she's learned and all her experiences with breast cancer and its treatment.  I could not ask for a better friend and mentor in this journey.  I learned a lot this morning, but I haven't totally organized my thoughts yet.  A few key things -- I had no idea how closely you work with your oncologist during this journey (so I am not triple thankful to have the amazing Dr Keedy on my team).  I had no idea how close you can become to people who were complete strangers because you share the common cancer bond.  I didn't know that "normal" (non-medical) people could become so fluent in lab results, drug names & doses, etc.  I've heard before that a critical factor in beating cancer is believing you can do it; I saw that in practice with Karla & her friend this morning.

Work was great.  I know that sounds weird, but its so good to be in my office, feeling normal, working and thinking about stuff that doesn't have a single thing to do with cancer.  I have to say here that I work for the best company in the world.  The degree of flexibility I've been given, the amount of care and concern I feel from my colleagues, and the genuine passion for what we do are unbelievable.  LP is truly my family, especially when we are here in Nashville without any family.  Every day I'm taken aback by something someone does or says that is so insightful, so impactful, so genuinely kind.  And it always seems to come exactly when I need it.

I did talk to the nurse practitioner at the Breast Center this morning.  She agreed they will rush the biopsy results as much as possible.  And Dr Meszoely, my breast surgeon, is going to remove my drain when she places my port on Monday.  Hooray.  Dr Vicki moved back my start date for chemo to March 6th to allow time for the breast biopsy results and hopefully, if they are negative, enrollment in the clinical trial.

This weekend Kendall & I are going to dinner at the Palm, then to see Shen Yun at the TPAC & spending the night downtown. A delayed anniversary celebration and our last big outing before treatments start.  We're excited about it!

For today's photos, I just picked a few that make me giggle.  Hope you enjoy!

Emilia & Eriana during the Floods

Our pumpkin carvings this year; think we went a bit
overboard???  When your neighbors have a pumpkin
carving party, why not!

See anything wrong with this picture?

Is it just me or is she GORGEOUS?

Love all these kids!  Stephanie & Dan's twins (Maddie & Will)
with EB & Eriana - almost two years ago.  Wow.

This is our friend Cameron when we were on vacation
in Port St Joe.  I just love this picture.  The look of sheer
FUN on her face is priceless to me!!

Quick update

Tired tonight so here's the recap on today's "biopsy". They tried for 45 minutes to find the masses using ultrasound. Several trips back & forth to ask the radiologist. Finally she (radiologist) came in & said she couldn't correlate 100% the ultrasound with the MRI so they were going to have to do an MRI guided biopsy. That couldn't happen today because the MRI operator had an "emergency". They said we will call you with an appointment when we find an opening. I had to put on my Ann DeBock (my mom was a feisty fighter!) attitude & insist that wasn't good enough. In this situation, the last thing you feel like doing is advocating for yourself - you just want someone to take over & take care of it all. Like your mom would do! FInally they called some patients, juggled some stuff & will do it at 12.15 Friday. They will rush the results but the earliest we will know anything is Tuesday. So Dr Keedy said we will push everything back one week. Frustrating. I left there around noon with a horrific headache - 4 hours & zero progress! That's the story. Going to chemo & then lunch with my friend Karla tomorrow then to the office. The good news is the week delay means I will have 4 days in the office next week, all being well! More tomorrow.

Back to work!

I made it into my office today!  I felt a bit like an animal at the zoo - people wandering by & peering in - but it was good to be back in that environment.  I wasn't there very long...

This morning I had the echocardiogram to clear my heart for chemo.  It was supposed to take 15 minutes, no big deal, routine thing, like an ultrasound.  After about 45 minutes of taking pictures, pushing me this way & that on the table, the tech says "I'll be right back".  Thats never a good thing!  He came back & said he thought he had found a small hole in the top of my heart, told me it probably wasn't a big deal, just they were going to have to give me an "agitated saline" IV & take more pictures.  So much for my "no needle" day.  Anyway, that took another hour & he wouldn't tell me a thing about whether the hole is big or small.  Nice way to start the day.

Before that I met with Emilia's guidance counselor at school who was wonderful.  I mean the lady has a black lab named Don who comes to school with her every day - she has to be a good person right!  We talked about EB & looking out for her thru this process.  She asked me a question I wasn't prepared for - what am I going to do about wigs?  I thought, really, wigs are not on my mind.  I'm planning to be bald & beautiful & anybody who doesn't like that, guess what, look the other way!  Then I realized I may have to have a wig for the kids sake.  We shall see.

So after those 2 things I went to work for a few hours before resuming my now almost full time job of being a medical patient.  Saw Dr Holt - I like her more each time I see her.  She said we need to leave the drain in until they are ready to start radiation.  But she did have them remove the sutures so thats a step in the right direction!  The drain is such a pain - it pokes me & it hurts when it pulls too far.  But alas it is there for a reason...

After that I saw Dr Johnson, the radiation oncologist.  He is the least impressive of all the physicians I've seen so far, but then I realized that radiation oncology is a kissing cousin to radiology & we all know how I feel about those guys so I probably didn't let him start from a fair position.  He was 30 minutes late taking me back & it was a good hour after my appointment time before I saw him.  And then I only saw him for about 15 minutes.  He said its too soon to start radiation - wants to do it sometime between 4 & 8 weeks post-op and he wants to wait for the breast biopsy to finalize his treatment plan.  So I will see him again next week.  I can hardly wait.  Not.

In other medical news, I am scheduled to have labs & see Dr Keedy at noon on Tuesday & to start my first infusion at 1.30 Tuesday; of course that is all pending the biopsy results which we will have Friday late or more likely Monday.  Thats tomorrow at 8.  Hopefully its relatively painless & I can go to work following the procedure.

Photo therapy is hard for me tonight. I'm in a shitty mood.  My clothes are too tight, my leg aches, I'm tired, I'm irritated at how much time all this takes, and frankly I'm terrified of Tuesday.

So I chose a few pictures that I can't help but smile when I look at!

Emilia & I at Disney World in 2005

Eriana Early 2007

Eriana August 2007

A BIG fish EB caught in Naples Harbor;
she fell off the boat in the process!

Chemo is going to suck.....

Not sure there is any other way to put it, really.

Yesterday Kendall & I met Dr Vicky Keedy who is my oncologist & the captain of my medical ship for the next year or so. She was amazing. We spent 2 hours with her, she explained everything in a way nobody else has been able to, she delivered the good news and the bad news with compassion but in a straightforward way, she answered all our questions. She was patient and nice, but she is very clearly on top of her game. To say I feel like I'm in good hands would be an understatement.  Interestingly, she went thru residency with Dr Linn, my regular doctor and she is great friends with Lorraine, a good friend of mine.  Small world indeed.

She explained that Ewing sarcomas are not terribly UNcommon in kids so all the research they have and treatment protocols are based on kids. She also said kids bounce back much faster than adults so these are some of the most aggressive chemo therapies they use. Ewing sarcoma is no joke; it is extremely aggressive in both local recurrence & distant metastases.  The cure rate with the chemo I will be on is about 70%.  I guess that's good?  She has treated a lot of sarcomas in her career & they see about 6 Ewing's a year.
So, we learned that its terribly important to start the chemo as soon as possible; the longer we delay evidently the lower that cure rate is.  Because of this, we will probably be doing radiation concurrently with chemo.

The chemo I will be on is a 5-drug cocktail.  The first week I will get 3 drugs in combination over the course of 2 days.  This one takes about 4 hours each day.  The following week is no drugs.  The 3rd week is a 2 drug combination which takes 6 hours a day for 5 days - yikes.  The week after that is no drugs, then it starts all over.  This goes on for 7 cycles or 7 months.  Dr Keedy said very rarely do people make it all the way thru with no delays.  Either the blood counts get too low or you get an infection or the side effects are too much & frequently an extra week is inserted here & there. 

The side effects are everything you traditionally associate with chemo.  Hair loss, nausea (although they say this is manageable with meds), could be weight gain or weight loss (with my luck it will certainly be gain), exhaustion, etc. etc.  She said you typically lose your hair around the 3rd or 4th week, so I am planning to shave it on my birthday.  My dear sweet husband already said he is shaving his too!

There are also some scary long term affects on the heart muscle & some other organs.  But, if we don't do the chemo then there is an 80-90% chance the cancer will come back.  What choice are you really left with?

The radiation we know less about until next week.  Dr Keedy told us the side effects of that are typically more local like skin irritation, etc.  They are unsure of whether they got good margins on the resection so the radiation is intended to try to prevent local recurrence.

Now, all this is based on an assumption that the breast biopsies are benign.  That we will probably not know until late Friday at the earliest or Monday more likely.  The results from those biopsies could change a lot.  For example, if one of the biopsies is in fact malignant, I will most likely have a mastectomy.  The question will be when to do that & we will let the docs fight that out.  Dr Keedy would advocate for doing it about half way thru chemo.  I'm pretty sure the surgeons will advocate for doing it straight away.  We will cross that bridge when we come to it.

For now, I'm gearing up to start chemo on February 28th.  I get the port placed in my chest on Feburary 27th.  Next week, aside from the biopsy, the radiation oncology consult, hopefully having the stitches & drain removed, I have to have an echocardiogram of my heart - evidently this treatment is exceptionally hard on the heart & they have to ensure everything in there is working perfectly before beginning.

Whew, its going to be a long year.  She said after treatment you start to feel better in 2 or 3 months & its a pretty steep improvement which plateaus & then it takes up to a year to really feel like yourself again.  She emphasized several times that this is a chemo designed for kids and it knocks most adults on their ass.

There is no doubt in my mind we can do this.  We will get thru this and be fine on the other side.  We are handling it all well, we have ultimate confidence in our health care team, and we feel the love and support of all our precious friends and family.  There will be some rough waters ahead, so please don't feel bad if we call on you for help, support, a shoulder to lean on, an afternoon out with the girls, etc.  These are the times in our lives when we need all the support we can possibly get!

Today's photos are 2 of the many I will carry with me each day of this journey.  Some will be printed, some will be in my phone or on my ipad, others I carry every moment of the day in my heart.  These are the reasons why I'm embarking on this 28 weeks of hell.  I have a hell of a lot more birthday cakes to make and crazy monster hats to photograph. 

 

 

 

And there is one more...

 

We just started on the next 50 years of our marriage.  We both fully intend to be there for every second of it!

Short & sweet

A day with no doctor's appointments. I didn't even talk to a doctor today although Dr Holts nurse practitioner left me a message to see how the drain is. I appreciated that - proactive healthcare. Nice. I walked about 30 minutes today & although it made me tired, it didn't make me nearly as sore as the other day. I made crockpot lasagna for dinner. Super easy & yummy. I discovered these plastic crockpot liners - this it out when you're done & no washing! LOVE! Joe & his wife Jamie came over tonight with some gorgeous cupcakes & a delicious peanut butter pie! Awesome treats & it was so good to see them both. I love having visitors! Kendall brought home some wonderful chicken salad & Chicken soup from Puffy Muffin that a friend brought for us. Plus salad, rolls & cookies. So we are all set for dinner tomorrow. And can I just say I'm excited for Monday when Rachel is bringing chicken enchiladas. Mmmmmmmm..... so tomorrow I get to see my friends Amber & Julie for coffee then we meet Dr Keedy; she is the medical oncologist who specializes in sarcoma. I'm sure it will be terrifying to learn about the chemo but I'm ready to tackle it. Our appointment is at the main Vanderbilt Ingram Cancer Center, the belly of the beast as I call it. I've been there once before for high risk screening. You leave thankful to be alive. Last time I left thankful I wasn't a cancer patient. We will see how I leave tomorrow... But the rest of the dy will be un. I'm finally having lunch with Lorraine & giving her her month old birthday present. Then it's just me & Eri for the afternoon because EB is going to a sleepover. So I've been bribing Eri with a trip to BuildaBear. I should be pretty well wiped out by tomorrow night. Thanks for the support, emails, visits, dinners, & cards. Don't stop - I gather strength from every single one!

Tumor Board Meeting

Well the tumor board met early this morning. Not surprisingly, Dr Holt's recommendation withstood the scrutiny of her colleagues; I am proceeding with radiation therapy followed by chemotherapy. We meet the radiation oncologist, Dr Johnson, on Tuesday afternoon and the medical oncologist, Dr Keedy, on Friday morning.
They fixed my drain this afternoon.  They did another ultrasound & the pocket of fluid was 8cm x 6 cm - as big as it was on Monday!
Frightening thought, I am starting to know my way around Vanderbilt University Med Center and even starting to recognize people who work there.  And this has only just begun.  Its starting to move fast now which makes me feel kind of sick to my stomach if I really stop and think about it.  Better to keep moving and not think.
We met with the geneticist this morning & got a bit of good news. The change in diagnosis to Ewing sarcoma pretty much eliminates concerns about Li-Fraumeni syndrome. That's great news for our family!  There is another genetic syndrome they will be suspicious of if the breast biopsy comes back malignant, which is called Cowden (I think?) syndrome. We will worry about that if/when it happens.  I think we're taking bets, starting a pool on whether the biopsy will be malignant or not...
I'm tired today, been on the go all day pretty much.  Kendall & I are going to the BlueBird Cafe tonight for our anniversary.  I'm planning to go to the office in the morning.  But, if I don't feel any more energetic in the morning, I will be working from here again.  Yesterday I walked for 40 minutes and my leg is sore today from that.  I probably walked that much today too just doing errands and the like.  Hoping to get another solid 40-45 minutes in tomorrow afternoon.
Anyway, thats the latest news.  I wish I could say its encouraging but they seem to feel this Ewing sarcoma is very very aggressive and want to treat it with as much as they have available.

This picture pretty much describes how I'm feeling today.  I took it in Punta Gorda shortly after Hurricane Charlie came thru in 2006.  I feel like part of my life is completely upside down like that golf cart.  Another part is tipped on its side like the floating marina.  And part of it is totally fine like the palm trees.  Strange feeling to say the least.

Happy Valentines Day!

15 years ago Kendall & I were at our wedding rehearsal dinner at Mama Nunzia's restaurant in Punta Gorda, FL.  Time sure does fly. 

Tonight we are celebrating a nice Valentines dinner at home with the family.  Girls are so excited its Valentines Day, especially Eriana.  I had to take them to the dentist this morning & when I took them back to school Eriana told Emilia's principal she was "all Valentined up".  Adorable.

I'm doing okay today; my drain isn't working.  I love teaching hospitals but I am not sure I really love residents so much.  I have to go in tomorrow morning & see the nurse practitioner in Dr Holt's office to get it fixed.  I doubt they'll have any results from the tumor board that early - probably not until the afternoon.  We meet with the genetecist at 12.30 tomorrow too.  I feel like a grandma with all my doctor's appointments.  Its constant.  And I have learned you don't really plan anything else for the day of a doctor's visit - because who knows what will come after that.  I guess the days of in & out are gone for a while for me. 

I did work from home today which was GREAT.  I miss everyone at work and I miss being engaged in it.  Soon enough...

For today's photo therapy, I thought I would include a couple pictures of the girls from Christmas this year.  I love those stinky little rugrats so much!

Happy Valentines Day!!  Happy almost anniversary to my sweetheart.  I love you, Kendall!

Who is Ewing?

I'm still processing the information from our visit with Dr Holt today.  First, the good stuff - the incision itself looks okay but the redness & swelling she said was from fluid build up.  She said I could be retaining 10-12 pounds of fluid and that it could last for 6-8 weeks, but she did send me to radiology to have a drain put in.  I won't get into the gross details but they removed a boatload of fluid & the incision feels better already!  She also said my hips hurt from fluid buildup.  More good news, she said walking is the best form of exercise right now - no elliptical or anything like that - and she recommends walking outside.  She said try to do up to an hour a day & once I can tolerate that move to trying to do it twice a day.  In a few weeks it will be okay to do upper body weight training too.  So I'm psyched to get outside & walk tomorrow!  Its sore tonight from all the poking & prodding & the drain being installed, but it definitely feels better without all that fluid in there.  Maybe my pants will fit now!  I do have this hideous "sack" contraption to tote around with me which sucks.  I can't go to work with that thing or sit for a long time so looks like I'm working at home this week.

The other things we learned are more troublesome and confusing.  The diagnosis has been changed to a Ewing's sarcoma, which is even rarer.  Typically it occurs in the bone but is also known to happen in soft tissue.  Dr Holt feels good about the surgery - she told us all she did & it was pretty extensive to remove a small tumor.  The pathologist doesn't seem to think that the margins were clear but that appears to be a debate they will have internally.  The Sarcoma Board will review my case on Wednesday when a final treatment plan will be determined, but Dr Holt is recommending radiation therapy for 5-7 weeks followed by 3-6 months of chemo.  She said the oncologists may feel differently & they will get it all hashed out this week & she will call Wednesday with more information.

The breast findings are concerning and there could be more changes to the treatment plan pending the results of those biopsies.  Kendall said we don't really know a lot more than we did this morning, but I think we do.  Its just as we are increasingly learning in this journey - there aren't any definitive answers.  I cannot imagine how challenging that is for the physicians - to want to answer their patient's questions but to know that they really just don't (or can't) know for sure.

Until we know more, it seems pretty much like the balance of this year is going to be filled with doctor visits, hospital stays & the like.  Sucks, but it is what it is.  We will cherish each new bit of information we get, continue to ask hard questions and evaluate the options.  I see Dr Holt again on Tuesday next week to get the stitches & drain removed, but I will be talking to her this week as well after the board discussion.

More details as we know them.

Party Hardy

Finally today Eriana celebrated her fifth birthday in style.  We had to reschedule her party in early December when Kendall's grandmother passed away so she has been waiting a LONG time for this!  She went to bed early last night so she could get plenty of rest for the big day (voluntarily).  She was up early this morning ready to go.  Took a bath, got her hair straightened & nails painted by her sister, even cleaned up her toys with only minimal shouting.  About a dozen of her buddies from school, the neighborhood & Hendersonville came to play with her.  They ate pizza then the Purple Play Bus came & it was awesome to see them all so excited.  You can check out the pictures if you want...
https://www.facebook.com/media/set/?set=a.3278869496769.2158387.1418481843&type=1&l=1366a3e166

 

After that they devoured the chocolate 4 tier cake that Emilia & I created.  We thoroughly enjoyed creating this for Eriana.  Next time I'm doing round though - the square corners are too difficult to make square.  Eri told us she wanted polka dots but she didn't want any input beyond that so Emilia & I came up with the design & built it.  Lots of fun & something we like to do together.

 

So, today was a spectacular day all around.  The parents of Eriana's classmates have been so wonderful to me during the last few weeks.  I just love to see her with her friends, letting loose, playing, being kids.  It made my heart smile and except for people asking me how I am doing, I could've been any old Mom today.  I needed that.

 

I do feel like 10 pounds of you-know-what in a 5 pound bag which is very frustrating.  Emilia makes me laugh because she is so encouraging.  In fact, she insisted on taking this picture to "prove" to me that I look "great".  I'm hoping I get the clearance to exercise at least some when we see the doctor tomorrow.

 

Speaking of which, tomorrow is a big day.  Not only do we have our 2 week follow up with Dr Holt but I am going BACK TO WORK!  Hooray.

 

At the meeting with Dr Holt, we expect to learn all about the pathology of the synovial sarcoma.  Such information as the stage/grade will be critical in determining next steps.  It will tell us how large the tumor was, specifics of the tumor itself, how "aggressive" it is, etc.  We will also learn whether there was involvement in any of the surrounding lymph node bed that she removed.  And we will learn whether she "got it all" - in other words were the margins clear.  We will also discuss with Dr Holt how my left knee ACL reconstruction "lit up" on the PET scan and if there is anything to be concerned about there.  As well, we will discuss the potential P53 mutation and the recent findings on the breast MRI.  Hopefully, it will be a very fruitful and encouraging meeting.  My intention is not to agree to any further treatment until we understand the results of the breast biopsies and the genetic testing.  I do expect her to recommend radiation pending the results of the other 2 studies and to refer us to both radiation and medical oncologists.   We don't meet with her until noon and I'm going to work after that, all being well, so I probably won't provide an update here until tomorrow evening.

 

Its back to just the four of us in our house.  Mike left yesterday morning; I cannot even express how wonderful it was to have this time with him.  Dad left this evening; it was also fabulous to have the time with him.  And time with the 3 of us together is such a rare commodity; I don't recall having any of that since my Mom passed away.  They both made me feel even more special & loved than I already did!

I thought I would share two more photographs today.  The first one is Gus & Arthur having a little wrestling match this morning.  I just absolutely love when they play together.  It is so spirited and fun.  Sometimes they chase each other around the house.  Other times they lay like this & bat at each other.  We have a cat toy called "Da Bird" that makes both of them literally do backflips.

 

 

The final photo for today is my sweetheart & my little baby before her party today.  Not much else to say about this one but I LOVE THEM!!!!!!

 

Thanks for reading, sorry for being a little long-winded tonight.  If you feel up to it, I would certainly appreciate your prayers about tomorrow's meeting with Dr Holt. 

An uneventful day

For which I'm very grateful.  I talked to the genetic specialist at Vanderbilt today & we are now suspicious of a mutation in the P53 gene.  Evidently families with this genetic mutation are predisposed to all sorts of cancers, in particular sarcoma & breast cancer...  Anyway we are going to meet her next week & get the P53 test done.  I already know I'm BRCA1 and BRCA2 negative.  The outcome of the gene testing, together with the results from the ultrasound & biopsy ought to converge sometime around mid-March with a treatment plan for moving forward.  So, I'm looking at it as a month to get myself back in shape before I potentially have more to deal with.

The incision is healing.  But at night my quads, hips, and incision hurt like crazy.  Feels good most of the day until around 4 or 5 pm.  One more day of R&R, I'm going back to work Monday afternoon after we meet with Dr Holt.  Looking forward to that.  I'm not sure I can make full 9-10 hour days straight away but I'm going to give it my best shot.

Had a nice day today with my Dad & Mike.  Then we went to lunch with Kendall before picking up the kids.  Relaxing and enjoyable.  A friend of Kendall's from Asurion stopped by this evening & it was fun to chat with her.  I can't help thinking constantly about missing the International Builders' Show down in Orlando.  Sounds like its a great show for LP this year & they are doing just fine without me.  Still, I feel like I should be there & I wish I was!

Today's picture if of a white tiger that I took last summer at the Nashville Zoo.  The reason I really like this picture is that 2 of his feet are in motion and I really love the way the sunlight is filtered through the trees creating the dappled light effect.  He is a beautiful animal, so graceful and regal.  So powerful and impressive.  Once when we were at the Nashville Zoo we got to see them feed the tigers.  That was pretty exciting.

No freakin' way

Thats about all I have to say about the latest news.  I went Monday for my annual routine breast cancer screening MRI - part of my high risk preventive maintenance protocol.  Of course, I'm expecting nothing (in fact, I even tried to talk them out of doing the MRI in the first place).  I mean hell, I've had a CT scan and a PET scan in the last month as well as a routine mammogram 6 months ago - none of those showed a speck of anything to be concerned about.

You can guess where this is going right?  Sure enough, yesterday I forgot they were even going to call with results because I had already put it out of my mind that it was totally run of the mill, even unnecessary almost.  Finally connected with the NP at Vanderbilt Breast Center around 5 yesterday.  There are not one, but TWO, "nodules" in my right breast that are suspicious and require further inspection.  Seriously?  They are quite small - 6mm roughly each.  I read the full MRI report today & it appears that one is pretty suspect - the other less so.  On the 22nd I will have a "second look ultrasound" and a biopsy of the one that is more suspicious.  I'm confused by the terminology "second look ultrasound" - seems to me some medical terminology designed to throw the patient off the scent.

What's really bizarre about all this is the script reads nearly identically to the script for the sarcoma.  1) Its very small, surely its nothing.  2)  Well maybe we should check it out, be extra cautious given your family history and high risk status.  3) It will just be a routine biopsy and we will have results in a couple days.

Chances are high its nothing and they truly are just being ultra cautious.  Here's more irony.  My lifetime risk of breast cancer is 29% right - essentially 1 in 3.  I've had 3 MRIs since they started following me as high risk.  2 were clear.  1 was not. Either there are some macro-coincidences at play here or their statistics are freakin' good.

Either way, here we sit for 2 weeks until we know more.  I think Kendall is pretty thrown off by this - poor guy got home late last night from a difficult day at work and this is the first thing he hears.  I mean, really, come on.  They say the PET scan can only detect 5 cm & greater (maybe they meant mm), but I know thats not true because the sarcoma was 2.5 cm.  Dr Linn says hopefully these new "nodules" are fibrous tissue since they didn't light up on the PET.  Its all confusing right now!  Once we have pathology from the breast and sarcoma we will meet again with the Family Cancer Risk experts - may as well wait a bit for that until we have all the info.

I'm not mad.  I'm not sad.  I'm not scared.  I'm not worried, really.  More I'm just dumbfounded.  I've been healthy as a horse my entire life - now 2 major issues in 1 month.  Feb 5th was Sunday - that was exactly a month since I found out about the synovial sarcoma.  By the way, the incision is still infected - it doesn't look too good.  But the pain is substantially better.  I am only taking pain meds except tylenol in the evenings as it is pretty swolen & painful after a day of activity.  I'm not spending much time in the recliner now, pretty much out & about most of the day which is wonderful.  My left thigh and hip are very sore - part of the healing process I believe.

We picked up my Dad at the airport today.  He's pretty happy to be with his two kids and Kendall and the girls.  Its great to see him.

I also wanted to express some appreciation here - I am again reminded how fortunate I am to have such a wonderful family and friends.  Yesterday we got a beautiful box of delicious treats from DeeDee, one of my colleagues and dear friends in California.  Tonight a friend is making us dinner (thanks Heather & Rick!).  And I know there is a box on the way from Chicago full of yummy stuff.  Mom sent us a beautiful ham to enjoy this week.  And I know God was at work when we decided to send Eriana & Emilia to FRA.  Eriana's teacher has been truly a God-send during all this.  Not only is she looking out for my little pumpkin during the day, but Karen & her co-teachers sent us a delicious dinner last week and now she is sending us another one on Friday!  Karen, we love you.  Last week, Emilia's dean called to see how I was doing.  The love and caring that we have felt from FRA has been tremendous to say the least.  And there are so many other acts of love and kindness - too many to list here but everything from flowers to fruit baskets to cards to the awesome facebook & email messages to special gifts.  Its overwhelming when I stop and think about it.

I've learned a lot about people in this journey so far.  Friends who I was sure would be right by my side through thick and thin have all but disappeared.  Others who I knew sort of casually but didn't consider close friends have been such pillars of strength for me.  I am not sure I will ever take anything at face value again.  Which is a wonderful outcome of these trials and tribulations - I have taken too much for granted in my life.  Not any more.

So, this news calls for some serious photo therapy!

This is a picture from our trip to Port St Joe 2 summers ago.  There are lots of wonderful women in this picture - especially my dear friend, Mindy, her daughter Kyra and step-daughter Cameron.  And of course my 2 nieces and my own 2 girls.  And our crazy dog Jessie.  I love the sheer happiness this photo reflects.

Love this one too.  This is the 4 of us on a boat we rented for a day (this swimsuit will NEVER fit me again!).  Again, more pure happiness.  I remember this boat day very well - we scalloped and scalloped and scalloped then ate our delicious catch when we got back to the house.  I remember Eri jumping off the boat into St Joe Bay & shouting at the top of her lungs "I'm so excited."

And this one is of me & my favorite sister.  Mike's wife, Cara.  We call her "Aunt Carrot" because Eriana used to think her name was Carrot, not Cara.  I adore Cara.  Not only is she a fabulous wife for my bratty brother and a spectacular daugther & sister, but she is an amazing mom to Julianna & Caraline.  And she is a huge role model for me.  She is so fit and so dedicated to being fit, it serves as a huge inspiration to me.  She provides me with constant words of encouragement, which I need and treasure.  I love the time I get to spend with Cara and its quite common to see us sitting like this with big smiles on our faces when we are together.

Right now we are in the process of selecting our house for this summer's week at Port St Joe.  The more I think about it, the more I cannot wait.  Thanks for reading...

Infected

Yep, in the latest news, my incision is infected. Kendall said it looks like I'm half pregnant - my left side is pretty swollen. Saw the NP today & she put me on an antibiotic so I'm sure it will all be ok in a couple days. Pain is getting better & I'm just taking pain stuff in the afternoons now. A lot of people have asked what the next steps are. We see the surgeon on Monday. She will of course check out the incision site but she will also have the pathology reports from the resected (fancy medical word I learned that means removed) tumor. That information with tell us the grade & I think stage of the tumor which will help decide what we do next. At surgery Dr Holt seemed to thnk that radiation was "probable" and chemo a toss up. On Monday I'm expecting her to refer us to a radiation oncologist and a medical oncologist. Not much has happened as I've expected in ths journey to date though! We will also be going back to meet with the Family Cancer Risk experts. These are the nurses who specialize in understanding the genetic aspects of cancers. They calculated originally a 29% lifetime risk for me of breast cancer based on genetics. As I understand it they will re-assess that & we will re-visit any potential other testing or preventive possibilities based on my sarcoma. So that's that. Can I just say my brother rocks! He has helped me so much already. Even having someone to drive helps immensely because it hurts to get in & out of the car on the drivers side. Plus we have had a lt of laughs. Hurts to laugh but so worth it! Erianas birthday party is this weekend. We had to reschedule it in December when Kendall's grandma died. She is so excited. I'm looking forward to using my camera! And thats about all the news that's fit to print tonight. Getting my hair cut tomorrow!

Visitors

Today was official Visitor Day! I picked up Mike, my little brother, from the airport early this afternoon. It is great to see him & wonderful to have another drivers license in the house! The girls are delighted he is here. They built a fort in the guest room & are having a "sleepover" tonight. Its been a very normal, busy Saturday. That feels good even though my entire left thigh & hip are agony. We made pancakes for breakfast, Eri had swim lessons & a birthday party. EB & I did a few errands & went to the airport. My buddies & customers are en route to the SuperBowl so I had some fun email exchanges with them today. They were pouring bourbon, I was taking Percocet. This evening my boss, Jeff, & his wife, Luanne stopped to say hi along with my good friend, Jamey and his wife, Karen. I think Jeff needed to see for himself that I'm going to be ok. It was a huge treat to see all of them & they brought some delicious food. Luanne is an awesome fudge maker & Karen made the best salsa I've ever had. So, as I try to fall asleep tonight, once again I find myself feeling so fortunate. Yes, the pain is bad (far worse & for a lot longer than I anticipated), yes I am scared about what comes next when I let myself think about it, yes I am tired of hurting & not being able to do what I want. But I have wonderful friends all over the world. The supportive and loving cards, letters, emails & messages keep me holding my head high. I have the very best family ever. My brother is taking a week away from his precious family to be with me, my daughters are so compassionate and loving (when they're not embroiled in world war 3 over a stick of gum or a cat toy), my dad is coming to visit me this week putting aside his own health concerns to spend 3 special days with me & Mike & my family, and of course, Kendall is not only the best Dad & husband ever but he is also my soulmate, confidante, & best friend. So, I'm excited about the next week. We will get a lot of stuff done (everybody knows how I love crossing things off my list!), spend a lot of quality time together & end it Sunday with Eriana's rescheduled 5th birthday party. When it's over it will be time to go see Dr Holt & figure out what to do next. And then I will get to go back to work! Hope you enjoy the SuperBowl & your team wins.

MORON!

I am a moron.  Yep, its official.  You can find my name on the moron registry.  Yesterday I decided to go for a stroll around the 'hood.  It was a beautiful day, in the 60s, sunny.  I wanted to walk a little further than I did the day before (logical right?).  Ooooh, I walked a little further - like for 40 minutes.  Had no intention of going that long or that far, but once I was halfway I was pretty much stuck, had to walk back.  When I got home I took a pain pill straight away, but for some reason it made me jittery so I spent the next 2 hours bustling around the house doing stuff I should not have been doing.

Consequently, I have set myself back at least 4 days in the healing process.  If I were able to, I would kick my own ass.  I mean, really, come on, Judy.  I was so freakin' focused on staying in shape, on making sure I didn't get lazy.  I made a really bad decision.  I had to ask Payton to get groceries for me today - I couldn't face lifting stuff in and out of the cart and the car.  She took the kids for Funday Friday to paint pottery this afternoon - something I love doing - but I hurt too bad to go.

Anyway, I did a better job today - baked a lot but if I'm standing or moving gently/slowly its tolerable.  Getting up from a chair or bed or sitting down is the worst. 

I don't have any words of wisdom or amazing photography to share today, but I wanted to let everybody know I'm alive, just suffering due to my own poor decision.  I suppose this is God's way of letting me know I am not invincible.  Message received....

The Bright Side

Today was a much better day, I'm happy to report.  Although its been raining on and off and right now we are having torrential downpours, I feel better!  I made it all day until about 4.30 with just tylenol and I wasn't suffering doing that. I did take it very easy today - took the girls to school, worked a while & picked them up.  Our neighbors brought us a delicious dinner from Zoe's.  That definitely helps, to take it easy.  Duh.

We figured out a new bandaging scheme thats much better than the patchwork gauze & tape.  My goal is to go to the gym on Friday; my plan is to walk very slowly on the treadmill and to do the hand bike.  I remember that well (not fondly but well!) from my knee reconstruction. 

Going to see my nutritionist tomorrow.  I'm terrified that this period of inactivity and the medicines are causing me to regain some of the weight I've struggled and worked so hard to lose.  That was not an effect I counted on from this ordeal - it never entered my mind.  So I'm trying hard not to beat myself up and set my expectations too high; as my good friend pointed out, now is a time to take it easy, eat stuff I don't normally eat & watch "bad TV".  Wearing workout pants all the time so as not to cause friction on the wound doesn't help one feel very "thin" either.  Anyway, I know they will be realistic and encouraging - which is just what I need!



Everything else is good.  The girls are good - seem to be adapting pretty well to the entire situation.  Emilia is more loving than normal.  Eriana is just Eriana.  She says a few times a day she's sorry I have a boo boo on my leg.  The cats like having me home - I am constantly getting snuggled by one of them.



Emilia at FlipFest Gymnastics Camp this summer.



Today's pictures are of Emilia. She is so inspiring to me.  The first is her at Gymnastics camp this summer.  We dropped her off to her first ever sleepover camp; she waved us goodbye & didn't call for the whole week.  Reminds me of myself at that age.  I loved watching her do gymnastics and the one thing I miss about Hendersonville is that she isn't able to go the gym we adored anymore.  The second is her at her first swim meet this fall.  Turns out she is pretty good at back stroke.  I love this picture because of the water splashing all around & her arm in motion.  Emilia inspires me because she isn't afraid to jump in and try a new sport.  It doesn't bother her if she isn't the fastest or most agile in the group.  She works out harder and tries harder than just about anybody I know.  And she doesn't quit when it gets difficult.  I'd like for everybody in the world to have her work ethic.  Hell, most days I wish I had her work ethic.  She not only inspires me but she makes me pretty damn proud too.  I'm one lucky momma to have a daughter as special as Emilia.  LOVE YOU EB!





Emilia swimming backstroke at her first swim meet this fall.