Thursday, June 28, 2012

Demolition Starts

Work started on the kitchen today - here is a morning & an afternoon shot.

You can see Mike, the contractor, working outside the window.

By this afternoon the window is gone & drywall is in.
  In case it doesn't make much sense, we are adding a wall of kitchen along the right side of these pictures.  The corner will hold a big pantry cabinet.  In the middle will be a built in ice machine & next to that integrated SubZero fridge & freezer columns.  Where our fridge is now will be turned into another pantry cabinet.  So step 1 is to remove the window.  You can see that he drywalled it today.  Tomorrow they will brick over the exterior.  Amazing how fast a window can disappear.  Next week they will move the air vent, do the electric & plumbing I suspect.  Hopefully the week after that the appliances...Fingers crossed.

As for me, I'm doing fine.  I'm pretty tired this time around - out of practice maybe.  Or maybe its the heat.  Anyway, 4 of 5 days are done & I know I can do one more with no sweat.  I've figured out the drug cocktails that make the side effects minimal I think.  Doc thinks I'm getting a urinary tract infection so she put me on Cipro for 3 days.  I guess somehow they can tell that from the urinalysis I have to do every day.  The ifosfamide is very very hard on the bladder so they make me pee in the cup every morning.  That is why they give me the mesna drug as a "supporting" medicine to help protect the bladder.

Thanks goodness Wimbledon has been on TV - that has kept me occupied.  Watched Nadal get spanked today - a very rare event.

Tonight Kendall is on the General Jackson for work & I'm home with the girls.  We ordered pizza & we're watching Annie on TV.  Nice quiet night!  I felt good enough when I got home from chemo today to concoct some spicy peach chutney.  Kendall's fave.

Well thats all today's news.  If I remember to photograph the brick tomorrow I will post those.  Meantime, thank you all so much for your cheerful notes & emails & texts this week.  I've done great all by myself & I'm proud to be about to start on treatment #28 in the morning!  That means 21 only to go - yes, it feels like the down side of the mountain!!!

Tuesday, June 26, 2012


So today marked past halfway for me - 25 treatments done & 24 to go! Tomorrow is hump day & this week will be on the down slide too! I appreciate all the notes & texts this week. They definitely help me. Been very tired & a bit nauseous although I did manage a bowl of chicken noodle soup & peach cobbler for dinner. Going to bed early again... Right now I'm listening to EB help Eri clean out her toys. Women after my own heart. I'm excited to have this week well underway & looking forward to a 5 day weekend! Tomorrow is our preconstruction meeting for our kitchen project. They are starting the work Thursday! I will document with pictures of course. Pretty excited for our new fridge, freezer & ice machine! Will write again later in the week!

Friday, June 22, 2012

Things to Think About

This morning I was surprised to turn on my phone and have a message from Vanderbilt.  I just saw all the docs & I haven't communicated with any of them, all systems are go for restarting chemo Monday so I really wasn't expecting any communication with them this week.

When I opened up the message, which was sent after 10 pm last night, it was from Dr Linn, my primary care doctor - the one who initially made me get the lump in my groin biopsied.  She didn't need or want anything, didn't have any medical results to share with me, didn't want to schedule another test or procedure or infusion, just wanted to tell me she is following my progress & wish me well in my appendectomy recovery.  This message really struck me.  Dr Linn has 3 little kids - and gosh only knows how many patients (she doesn't take new patients).  Here she was at 10 pm thinking about me.  And letting me know it.

This got me to thinking about the power of not only thinking about people, but telling them that you're thinking about them.  Its something that has really been impactful in my treatment and my outlook thru this whole process - knowing that others are thinking about me (in a positive way - not putting pins in the voodoo doll I hope) and have been open and willing to tell me that.  It seems a small thing - to just send an email or a text & say Hey - I'm thinking about you - but you just never know when that will be the turning point in a bad day or the bright spot in a cloudy week. 

Its happened to me so many times - sitting in the chemo chair either bored or, on occasion, feeling a bit sorry for myself (yes, it does happen) & ping - there goes the phone with an email or a text.  Usually I open it up sort of grudgingly thinking its more work for me to do or someone wants to schedule a conference call.  But every so often, its not - its a note or a message from a friend or colleague or acquaintance or family member - it doesn't usually say much - just hi, thinking about you or how are you - but it changes everything.  Those few little words wipe away the sorry for myself or make me forget I was bored.  Sometimes they even make me forget where I am for a bit.  They are treasured.

This week one of my friends brought me 6 beautiful pink roses.  Not because I am sick or because anything is wrong - just because she was thinking about me & wanted to brighten my day.  Sometimes in life little gestures mean so much more than big, grandiose, fancy ones.  I don't know why - they just do.

So, I guess to cease the rambling - one thing I've kind of pledged to do is tell people when I'm thinking about them or worried about them or whatever.  Just a few words, the impact infinitely greater than the verbiage.

We haven't got any big plans this weekend - we're excited about Ann & Bill bringing us dinner Sunday - its always a treat & we all look forward to it.  I'm sure the weekend will fly by merely because I really don't want Monday to get here.  But, you know what, it will.  And I will head off to chemo, and the week will be fine.  I'll get to come home each night to my baby girls and my sweet husband, sleep in my own bed, and be grateful for modern medicine washing the cancer out of me!

Wednesday, June 20, 2012

All Clear

Today & yesterday were busy with doctors appointments & labs. I'm so used to going to Vanderbilt for chemo & being there for hours it's a weird feeling to just go to see a doctor. Yesterday was my final visit with Dr Johnson, the radiation oncologist. Yep, I have my first official release from an oncologist. I hope it's a sign of things to come! I dont have anymore appointments in the basement, where radiation oncology hides. Hooray. Today I had labs, then I saw Dr Keedy. She is so wonderful. She said it was quite the accomplishment to undergo a major surgery being so nutropenic (low white blood cells) & anemic (low red blood cells). We thoroughly reviewed everything & agreed to start chemo again with the 5 day Ifosfamide Etopocide regimen Monday followed by Cyclophosphamide Adriamycin & vincristine the week of july 9. She is pleased its only a 2 week break & was thrilled with how quickly my white count has stabilized as well as how well the anemia has resolved. The pain I still have from surgery is to be expected. I guess my expectations of being pain free within a week weren't quite realistic. I also had my follow up with general surgery today. It was a very brief visit with a sweet Dr Bailey who reminded me a lot of Dr Bailey on Greys Anatomy (but my Dr Bailey was tall). My incisions look good - the steri-strips are still on them. She told me about a doctor friend of hers who recently had a laparoscopic appendectomy. She said it was a little over 3 weeks before all her pain was gone. She said her friend said she wouldnt ever tell her patients the recovery was a breeze again. Made me feel better! The surgeon also said its fine to start back on chemo Monday. I have really mixed emotions tonight. I'm thrilled that the blood counts are back to normal & the surgery healing is going well. I know intellectually I can't finish chemo if don't start back. But I dread Monday morning. I dread the smells of chemo, the hours in that chair, the foggy feeling from the meds, missing a trade show in San Francisco, having my port accessed for 5 days. Ugh. On the other hand, next week puts me well over halfway, I have plenty of work to do from there, I adore my nurses, I won't have to get blood, and I am anxious to get to the end. So I'm pretty conflicted at this point.... Maybe the next 5 days will crawl by! And the 5 after that will fly! Thanks one more time for the cards, calls, emails, messages. I need you to keep them up, don't let up now please.

Monday, June 18, 2012

Lilly Oncology on Canvas

Early on in my trips to Vanderbilt Cancer Center I found a flyer for an art & photography contest sponsored by Lilly.  Entries are due June 29th & I wanted to share what we submitted.  Many of you have seen this on Facebook - I apologize for the repeat if you have but a lot of my readers aren't Facebookers for one reason or another.

We are entered in the cancer patient - photography contest.  I don't know when results will be announced but I will keep you posted.  Even if we don't win a thing (the prizes are funds donated to a cancer charity of your choice), it was fun to enter!

Entries consist of a 9x12 photograph & a 125 word narrative.  Here you go....

By My Side.

Cancer is a very personal illness but one that cannot be endured alone. This image depicts unconditional love and support – a mother with cancer watching the natural beauty of a perfect Florida sunset side by side with one of her beloved daughters. Captured by a loving and devoted husband and father, this image represents cancer as a tool being used to strengthen this family. Its raw and its real. We don’t often think of cancer in a positive light, but the relationships illustrated in this photo have been forever deepened by this family’s journey through the world of cancer. Cancer has brought this family closer together and allowed them to develop an appreciation of the friendships and care of the village that supports them.

Friday, June 15, 2012

Dollars & Sense

So one thing I haven't written much about cancer is the financial impact it can have.  We have been truly blessed with an outstanding health insurance plan provided by LP so the impact on us has been relatively minimal.  Our particular plan has a $2,000 out of pocket maximum which we hit about 15 minutes after the doctors first said the word cancer. 

Vanderbilt has a really great web platform that enables me to keep track of my labs, communicate with my providers, etc. but it also has a billing interface.  So, just for grins, I took a look at what my illness has cost so far.  If I just typed the numbers in nobody would believe it so I copied them off the website.
The first number there - $312,978 is how much Vanderbilt has billed our insurance company this year.  Keep in mind this is before the latest appendix event.  And it doesn't include prescriptions or the physical therapy I had.  Each cycle of chemo costs about $50,000.  The surgery to remove the tumor was about $25,000.  Get this, every time I get a Neulasta shot (which is after each round of chemo) its $7,000.  One shot is $7,000.

The second column over is how much insurance has paid combined with how much Vanderbilt has written off.  The other columns are still pending with insurance.

Its easy to see how by the end of treatment I will exceed half a million dollars in charges.  Probably before the end actually.  I cannot even imagine enduring a financial hardship to PAY FOR cancer treatment in addition to all the social, medical & psychological hardships of the treatment itself.  We are once again the lucky ones - great employers & great insurance.  There are a lot who are so much less fortunate.  I read an article about oncologists & how they always ask patients about side effects & how they are feeling, how they are tolerating the treatment, etc. but they never ask about the financial impact.  One oncologist wrote about how one patient ended up having to file bankruptcy because his family could not afford the treatments & the oncologist never even knew.  This disease has so many dimensions its difficult to consider and account for all of them.

I don't really blame the cost of treatment on any one entity.  I promise I won't get political here.  I think the drug companies who invent these life saving cancer killing drugs have billions invested in development & deserve to recoup that and profit from their investments.  That part of the chain has to remain viable or cancer treatment won't advance.  I think the hospital deserves to be paid fairly for the amazing services they render & all the employees at the hospital similarly deserve to earn a good living.  This part of the chain has to be profitable or hospitals lose their drive for excellence & become just places people get treated.  I think the insurance companies deserve the right to try to negotiate to pay the hospital as little as possible so that they too can realize a profit.  I don't know as much about how they operate first hand so I have less insight here. So I don't suppose looking at it that I think any part of this economic capitalist chain is broken.  Its just when you add it all up its truly staggering.  And would clearly impart financial ruin upon any individual or family who is not insured. 

Further, we are lucky that we don't have any associated costs with treatment.  I drive there, I park for free.  There are no overnight hotel stays for my family and all that entails.  Many many patients at Vanderbilt are not so fortunate.  In fact, the default assumption of the Vanderbilt staff when treating patients is that you're from out of town. 

Anyway I'm not really sure the point of this whole post, it has just been on my mind lately to try to help people understand the financial costs of the disease.  Its one of the very under-represented parts of cancer.

Hope my readers have a wonderful weekend.  Its going to be a hot one here in Tennessee.  The girls are spending the day with the Isaacs tomorrow - Eri's "other mom" as she calls Mindy.  Kendall's running in a race in the morning & I will get some quiet Judy time.  We're having friends over tomorrow night for Kendall's famous ribs. 

Sunday we will celebrate my soulmate, my best friend, the best father in the world, my darling husband Kendall.  Its HIS day!! 

Tuesday, June 12, 2012

Kids & Dogs

Thought you would enjoy some non-medical, non-cancer photos.  We took the dogs to Percy Priest Lake a couple weekends ago to let them swim.  Thats probably the one thing (aside from our friends) that we miss about Hendersonville - proximity to the lake for the doggies.  Kendall thought maybe Jessie wouldn't remember how to retrieve her buoy - no worries there.

Emilia's ready to throw the ball (but Jessie doeesn't care about the ball)

She is just trouble no matter how you look at it

Forget how to do this?  No way

I can't tell what Cedar is thinking - probably thinking back to the good old days when she was so athletic

Trouble is turning into a good buoy thrower

The supervisor

I know, we are in trouble here too

That splash you see is Jessie!
When we were in the Keys we pledged to take them more often - we have been pretty bad about it since we moved.  I guess maybe we have been busy with other stuff?  Anyway for once I remembered to take my camera & got some great shots.

In other news, we are meeting with the remodeler on Thursday to finalize the plans for our kitchen.  We are adding an area to our kitchen that will house my dream appliances - a full size fridge & a full size freezer.  To say I'm a little bit excited about this would be probably one of the world's biggest understatements.  We are also getting to add some cabinets & stuff too - I'm not sure when we will get started - I'd guess sometime in July.  Luckily it shouldn't be a very long or complicated (famous last words) remodeling project but boy is it exciting for me.  We will lose a bit of space in our kitchen eating area but we'll still have plenty of room.

Well thats it for today - enjoy the pictures & take it easy.  Thats what I'm doing!

Monday, June 11, 2012

Going home tonight

What a whirlwind few days. I'm doing much better today - the pain from the surgery is well controlled by Lortab & this was the first surgery I ever had that the anesthesia didn't make me sick! They let me eat real food at lunch - you will never believe what they brought me - fried catfish & spicy rice. Ugh. I ate the cornbread & a cookie. I'm actually feeling a bit hungry for be first time since Friday morning. My white blood cell count jumped from .7 yesterday to 6.7 today! Woo hoo. And my neutrophylls (the healing part of the white blood cells) jumped up too from way low to in the normal range. My red blood counts are still low so I'm getting a unit of blood before I go home. Dr Keedy says we will probably restart Chemo in 2 weeks. Not sure if that means 6/25 or the week after. Hopefully this break will allow the incision to heal & my body to recover a bit so maybe we can keep on schedule for a few more cycles. I will probably be home from work this week - working at home & be back in the office on the 18th. I have to say how outstanding the care has been here at Vanderbilt. In the ER everyone was really fantastic - the doctors & nurses & techs were competent, compassionate & great even though they work under tremendous stress. On the surgical floor I can honestly say I've never gotten better care. The nurses here have been great at telling me what's going on, great at taking care of me, understanding my situation - just wonderful. The docs I've seen this time - especially the surgeons - have been wonderful. And the nurses in preop/recovery & the OR (even on a Sunday) were first rate. I am once again thankful to be here at a world class institution for my care. Will let you know how the week progresses. I'm due for a very boring, quiet few days!

Sunday, June 10, 2012

Under the heading of...

Truth is stranger than fiction, I am in the hospital at Vanderbilt tonight. I know it's crazy. After such a great week, I felt like shit yesterday. Finally took my temperature in the late afternoon & it was around 100.3 plus I had severe pain in my lower right abdomen. Kendall called the on call oncologist & she said I should go to the ED to get checked out. I asked Kendall to stay with the girls & I headed here. Spent a while in the ED, which was very busy, finally got a room. My white & red counts were the lowest they've been so I was pretty sure they were going to admit me. To make a long night short, I had a CT scan & an X-ray & was diagnosed with appendicitis! At 3 am I got admitted to the surgical service. This morning around 10 they took me down for surgery & I am now less one appendix. Feeling ok, getting tons of antibiotics since my white count is so low. Also got some platelets transfused today. Not sure how long I will be here - I'm guessing til Tuesday if my white count pops up. Not sure either how long we will pause chemo to recover but it's safe to say I won't be getting any tomorrow! Don't worry about me. We are all fine. Our sweet neighbors kept Eri today so EB & Kendall could be with me. EB built me an origami zoo in my room & the surgeons bandaged my incisions with heart shaped gauze. I can't upload pcs on my iPad to Blogger or I would share! As always I will keep you posted!

Friday, June 8, 2012

Great Week & Welcome Callie!

Its been a wonderful week here.  Had a really fun & successful trip to Maryland early this week.  I had no idea how much I have missed being out there with our customers & sales people.  It was freezing cold there & kind of rainy so I made the decision NOT to go on the boat fishing on Tuesday.  Instead I hung out by the fire in the lodge & read a book (no internet there!).  It was a very relaxing day for me.  It was a fun but cold day for those out fishing but they had a great time.  Looks like we will eventually get some very nice new business out of the efforts and I made some new friends!  Amber & Lorraine took great care of me, made sure I got back in one piece.

Kendall & the girls were happy to see me when I got home on Wednesday.  Seemed like they really missed me - I guess you get used to Mom not traveling after a while.  I think swim practice every morning is really wearing Emilia out - its about an hour & a half every day.  Eriana has it for only 30 minutes and absolutely loves it.  Emilia has been doing this very cool camp at USN which combines art & cooking & she really enjoys it.  Eriana has been in sports camp at FRA which she enjoys I think.  She did tell me she doesn't like the games that involve balls though.  They died parts of their hair red & purple yesterday.  Pics soon I promise.

On Saturday Kendall took the girls to Happy Tales Humane.  Yes, you know where this is going.  They (especially Emilia) were really broken hearted about Gus's departure so they came home with Callie, a 3 month old calico kitten.  She's adorable, has stolen all of our hearts.  Here she is.  Yes she is sitting on Kendall's shoulder.  She likes to sleep under the covers but makes sure she visits all of our beds during the night.  Arthur & Gizmo are pretty much indifferent to her although she finds Gizmo's tail to be a very fun playtoy.  She hasn't quite figured out traction on our hardwood floors yet which makes for some good laughs.

Yesterday Kendall & I got to spend the afternoon at my boss's house with one of our customers.  It was a wonderful relaxing afternoon with some great friends. 

This is a crazy week in Nashville as it is the CMA Festival so there are tens of thousands of country music fans here in the city.  Good weekend to stay at home & hang out at the pool which is about all we have planned. 

Next week is the 5-day chemo; how does a month pass so fast??  Amber & Lorraine have insisted on taking 2 days each next week to spend over at Vanderbilt with me.  I love them for this, it will make the days go by so much faster as we will no doubt be laughing as we work.  I'll be sure to get pro-active phenergan next week every day so hopefully I won't have the nausea I had when I was in the hospital.

A lot of people have asked me how much more do I have.  Well, the good news is that I've finished 7 of 14 cycles.  If you count it in days of treatment like I do, I've done 23.  I have 26 to go.  After next week that will be down to 21!  I do have to have labs on Monday morning & all my counts will need to be good enough to proceed with treatment so if I have any favors or prayers to ask for, its that the counts are good on Monday, treatment can proceed as scheduled & no PUKING next week!!  Thats not too much to expect right!  I can handle not wanting to eat (goodness knows I don't need anymore calories right now) but the puking just SUCKS.

The girls are busy next week with EB at tennis camp at Lipscomb University & Eriana at Cheekwood Botanical Gardens in the afternoons.  EB's happy she doesn't have swim practice next week.  Eri's happy that she does.  Go figure.

People have also asked me a lot lately in person, in email & in cards how I'm doing.  I know some of you think that I'm just telling the good stuff on my blog.  But I'm not - as you know in the last couple of weeks I have written when I've felt like shit as well as when I feel good.  This week has been amazing.  Not only have I felt great physically but being able to do some of my old work activities has been so empowering for me psychologically.  My next step is to try to figure out how to weave in some physicall activity.  Now that the pool is open I'm thinking of trying to do some lap swimming a couple days a week.  I'm hoping to begin that this weekend.  So, if I'm feeling good next week during treatment, I may try to swim or walk in the evenings as well.  Really, truly, for all those who want to know, I'm doing great.  I have so much to be thankful for.

I read an article in USA Today on Monday about pediatric cancers & how the improvement in survival rates is truly a medical miracle.  USA Today Article  I'd suggest you read it - the story is very motivating and inspirational.  And personally, since I kind of consider myself as having a pediatric cancer and am definitely being treated with a pediatric regimen, its extremely encouraging.  It also is an excellent reminder to anybody under treatment of the life and death importance of getting treatments on time, reporting side effects, following the physician's instructions, etc.  Worth a few minutes.

Lastly the garden!  I get asked about that all the time too.  I have to say with the warmer weather its doing better.  There are some things we'll do differently next year - our spring crops really didn't do well.  But we are enjoying it immensely - we go out there at least once a day & tour - even the girls do.  Our sunflowers are starting to bloom & even our new roses & hydrangeas have blooms.  I'll take some more pictures soon.  The soil test didn't really tell us much - you need a Ph.D. in soil management to understand those things.  Even my master gardener Dad confused us with his interpretation.  So we threw down some fertilizer & march on!

Saturday, June 2, 2012

Nearly Normal Again

After a couple very sleepy & crappy days, I'm nearly back to normal.  Hooray!  This morning I was even motivated enough to put the Keys pitures up on Facebook.  You should be able to look at them by clicking this link:
Facebook Florida Keys Album
If it doesn't work let me know & I will send you it separately.  There are some really fun pics.  I'll have to figure out which ones will get to be printed & displayed on my famous photo wall in my office.

I can't really remember how much I have shared of this week.  It was a tough one.  I had the three-drug cocktail on Wednesday (I feel nauseous just writing about it) & again on Tuesday.  Those drugs are just vicious. No two ways about it.  I felt pretty much like crap all day Wednesday & Thursday & only marginally less crappy yesterday.  I hate that feeling of being out of it - not being mentally clear.  Its the worst.  Got a lot of nausea meds that didn't help much.  Finally Dr Keedy called in Ativan for me so I took that Thursday night & last night & it seems to have solved the problem.  I also got a couple more units of blood on Thursday to kind of top off the tank.  Followed by the Neulasta shot yesterday.  So I'm good to go until Monday, June 11th.  Woohoo.

Dr Keedy isn't positive we will be able to do the next round on the 11th because I started this past round a day late due to vacation.  She's willing to have me come in & do labs & give it a shot though which I take as a good sign.  So get your positive vibes working on that for me please!

The girls went to Camp Idyllwild this week & absolutely loved it.  They played in the creek, ziplined, climbed rock walls, jumped on trampolines, hiked, made candles & soap, tie-dyed shirts, just generally had a blast in nature.  Eri wanted EB to hold her hand getting on the bus the first morning but after that there was no hesitation whatsoever.

This coming week they will be back with Payton, which I know they're excited about.  They'll start summer swim practice in the mornings.  In the afternoons they will be at different camps - EB will be doing a cool thing at University School of Nashville called Pantry on your Palette that combines art & cooking. Eri will be at FRA doing an All Sports Camp with Coach O.  Wednesday Payton is walking the Red Carpet so we are really lucky that Jeannette will be able to pick them up.  Lucky kids!

As for me, I am going on my first work trip since cancer came into my life on Monday.  I'm excited, a little anxious too.  I'll have my best colleagues there to make sure I'm A-okay though.  We are going to Savage River, MD to take some customers fly fishing.   I am quite sure it will be very tiring for me since its the first trip but I have some confidence built up from the Keys trip that I handled so well.  In fact I got a huge compliment from Cara, my sister in law, when she said if it wasn't for my hair, she wouldn't think anything was different about me.  I was very pleased and proud to be able to do everything on vacation that I've always done and didn't hold the family back from anything.  We rode waverunners (and yes, I flipped EB & myself off!), snorkeled in the Ocean at Coffin's Patch, went to Key West, went wreck fishing, made lots of trips to the beach and pool, ate many delicious meals, etc.  It was just like a normal family on vacation except I look a bit like a bloated tick & have no hair!  Aside from that, life is good!!!

Love you all, talk to you soon!!!.