Saturday, July 28, 2012

What will we do?

It seemed like a good idea for our kids to spend two weeks in Florida back when I Booked the tickets in February. Now that they are about to leave I'm wondering what we are going to do for two weeks with no kids! I miss those brats already & they haven't even left! It's been wonderful to have Maryann/Mimi/Mom here for 3 days. Nice to have someone so wonderful here to pal around with. I will miss her too when she leaves with EB & Eri tomorrow morning. But tomorrow Lisa will be here so I have that to look forward to! Then Monday morning is labs, see the nurse practitioner & Round 5 of Turbo Chemo. After this week & assuming we nix the final round of chemo, I will be down to 7 remaining treatments! I am so ready to be done! This week will be infinitely more bearable because Lisa is here, though. I suspect we will also be adding an extra week before starting the next cycle as well. I just can't recover like I could after the earlier cycles. Will be interesting to see my labs tomorrow after 2 weeks "off". So I will fill you all in on Monday & let you know how things are going. I've gotten lots of Wonderful cards & notes in the last week or so -- thank you very much! I'm super excited to say we booked our tickets to go to my brothers for Thanksgiving. And Emilia & I are going to take scuba Lessons this fall. Our family Chrstmas present is 8 days in CuraƧao where we will do our checkout dives. The past week has been one of the best Since chemo started because I went to work every day like a "normal" person, I felt like I was contributing & my brain was clear & functional & I got to plan family vacations like a "normal" family. All very encouraging & reassuring to me to know that soon - within the next 6 weeks or so - our lives will return to "normal"! Enjoy the Olympics! What an inspiration some of those stories are!

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Sunday, July 22, 2012

Some pictures

Thought I would share a few fun photos from the last few days.   Rafting pics to come this week!

The girls enjoying donuts on Friday, doing their part
to help mommy feel better!

The making of John Sid yesterday - he enjoyed the
movie today

Told you Eri plays with her stuffed animals - this is the
petting zoo in our TV room

The enclosure in our kitchen - should come down this
week while we wait for the cabinets

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Saturday, July 21, 2012

A peaceful weekend

Well as peaceful as can be with 2 kids, 2 dogs, & 3 cats! Julie B & her beautiful family brought us yummy Einstein Bagels this morning. What a treat! I like mine with saga blue cheese & fresh tomatoes from the garden. Kendall likes his with smoked salmon spread. EB likes butter & jam on hers & Eri loves cream cheese. Einstein is the best - we used to get bagels there whenever we went to Austin back when we were stationed at Fort Hood & there was also one near the hospital where my mom had her cancer treatments so it has a long history with us.

I was supposed to take Emilia rafting on the Ocoee this weekend with Lisa & Lorraine but that got a little upended by the blood count situation. Daddy to the rescue! He took EB to Chattanooga this afternoon, They are seeing a movie tonight, spending the night & then going rafting tomorrow. I'm a little jealous but I will take her next summer! EB got a new waterproof camera for the trip so I hope to have some good pics to share.

Eri and I are here having a good old time! This afternoon we watched Land Before Time then went to Costco combined with a bribe trip to Build a Bear. That is Eri's favorite place on the planet. Sometime I will have to count how many she has - but I will say she does play with them! They had the Ice Age characters so we got Sid, but he has been named John Sid... He wears Harley black leather chaps & brown suede cowboy boots. He is married to a frog named Sylvia Sid & they have a baby, which looks a lot like a frog. Doesn't bode well for survival of the sloth species. I will post a picture next time - Blogger and the iPad don't see eye to eye on picture posting. We had Costco pizza for dinner & watched The Swan Princess! Poor Odette left at home while her valiant husband rushes off to save his mom, The Queen. no comment....

Tomorrow Eri & I have very big plans. We have to make the weekly Target run then We are going to lunch for Mexican food. I've been avoiding that after a couple bad chemo-related experiences but I'm ready to give it another chance. Then we are going to take John Sid (but not Sylvia - she has "too much to do") to see Ice Age 4. It will be our second time seeing it but it's pretty funny so I don't mind. After that we will probably come home & get their stuff ready for camp this week.

The girls are at Camp Idyllwild this week. They loved it when they went in June so I think they are looking forward to it. The only downside is its a 45 minte bus ride each way. Next weekend they leave with MiMi for Florida for 2 weeks. I'm not sure what we will do without them for 2 whole weeks but I'm pretty sure they won't have time to miss us!

When Eri & I took a bath tonight she Told me I'm the luckiest one in the house because I don't have to wash my hair. Got that right sister. She also asked me why I have chemo. That's a tough one to explain to a 5 year old. I told her its so I can be healthy again. I think that was a good answer because she said, I know so you can go to the YMCA & stretch & take us places & do a lot of stuff. Gotta love the simplicity. do a lot of stuff like live for 40 more years!!!

Well that's all the news from here. I'm pretty thankful tonight for blood transfusions. Thursday I wasn't too sure I was going to be okay but now I'm back to Judy thanks to 2 units of blood. If you're healthy & able to, please give blood. I know I will be as soon as I'm allowed to. I admit it's not something I've given much thought to since it was mandatory at West Point but I will now!

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Friday, July 20, 2012

I'm laughing now!

this is really funny, I guess. Went for labs yesterday - I knew they were bad because I literally had to sit down after walking from the bedroom to the kitchen since Tuesday. I really don't know looking back how I made it to work Tuesday & Wednesday.

So yes they were low - at "crisis" levels as the lab calls them. My white count was .2 - lower than when I had the appendicitis. My PCV red count was 19. That's the lowest it's been so far. My platelets were 42 (low end of normal is 150s). I wondered if they were going to admit me but instead they gave me 2 units of blood. Unfortunately there was a positive antibody screen presumably from the unmatched platelets I got during surgery so it took several hours to find the right blood. I finally left Vanderbilt at 7.30 last night. I was quite the spectacle in the cancer center. All the nurses wanted to come see the girl with a PCV of 19!

Dr Keedy came up to see me yesterday & we agreed that based on my counts it was best to delay next week's treatment one week. I'm supposed to feel disappointed because I'm not on schedule anymore. But I don't feel disappointed. I feel like we made a good decision.

Somehow the possibility of doing 6 rounds instead of 7 has taken the stay on schedule pressure off. But then I had to laugh. I have 19 plus people scheduled to come to chemo with me & that all just went out the window.

So if you have signed up THANK YOU but please understand those dates have all changed. I think I will do it a week at a time now - if that makes it too hard for your calendar I completely understand. I just don't want to create anymore unnecessary scheduling & rescheduling for my generous supporters.

So please keep checking here. I will post days, times & needs as I know them. Thanks for understanding.

I'm mentally back in a good place - largely due to your response to my call for help. I'm so fortunate to have such amazing friends. Thank you!

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Wednesday, July 18, 2012


Really I don't know what else to say except I have been truly humbled & moved by the response to last night's post.  Almost all the days are filled!

20-AugAmber's Birthday
23-AugLisa A
24-AugLisa A
4-SepApril ?
17-SepLisa A
18-SepLisa A
21-SepKaren C

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Tuesday, July 17, 2012

Ok I need help

Yep, it's happened. I have finally gotten to where I need to ask for help. Not help on the scale of the garden party thank goodness.

I am really struggling with having the perseverance mentally to finish these last 19 treatments. And I'm ok with admitting that. I'm human after all. I have to imagine its a bit like running a marathon (I've never done that so I'm speculating of course). The closer you get to the finish line, don't the miles seem longer? I've become obsessed, I realized with some friends' help today, with the countdown. And the more I count down, ironically, the more I seem to convince myself that I don't need or want to do all 19 remaining treatments.

Today I even went so far as to ask DR Keedy what would happen to my chances of recurrence if I only did 12 more instead of 19 more. Naturally there is no data so no answer to my question. I'm not a quitter - so why am I telling myself I don't need to finish this?

Maybe because I'm tired
maybe because it sucks
maybe because I'm feeling sorry for myself
maybe because I want my life back
maybe because I'm sick of not being able to exercise or wear my clothes
maybe because I hate committing to do things then having to renig
maybe I'm over having stomach cramps & backaches & a ziplock bag full of meds
maybe I hate having this port & the weird feeling wires in my chest
maybe I can't stand the Taste of saline when they flush it
maybe because I didn't go to med school because I really don't understand or care about stuff like blood counts
Maybe I'd much rather be wearing my steel toe boots around an OSB plant than getting a transfusion
Maybe I really hate being too tired at night to play with my kids or talk to my husband
Maybe I dont like looking bald & different from everyone else
Maybe it bothers me that there is always a looming possibility of delay & I cannot do a thing about it

I have lots of really good reasons to quit. But damn it I am not going to! I am going to 19 more treatments as close to on schedule as possible and I am going to finish this shit once and for all. Chemo is not going to defeat me, no freakin way. I'm done with the pity party & ready for action!

And so, I need help. feels like I'm an addict right now. What help do I need? I need someone, just one person each day, so no more than 19 people total, to go with me to each remaining chemo treatment. I'm going to do what I do best - plan & organize & execute.

So, we have next week covered. Lisa will make sure I go. I do need a volunteer for next Friday.

As best I know it now, here are the rest of the dates.

August 7
August 8
August 20
August 21
August 22
August 23 - Lisa A
August 24 - Lisa A
Sept 4
Sept 5
Sept 17 - Lisa A
Sept 18 - Lisa A
Sept 19
Sept 20
Sept 21

So, if you Want to volunteer for a day, let me know. My email if you don't have it is

The first day of the cycle starts early because I have labs & then see the doctor then do chemo. The subsequent days start around 9 or 9.30. The 5 day weeks they last til 3 or 4. The other weeks I'm done by noon. You don't have to drive or entertain me. You just have to make sure I don't quit. In exchange you get my everlasting gratitude. I don't need, to be really honest, help around the house or with the kids or meals - we have that all under control. I just need a responsible person to keep me honest!

Thanks for listening. And helping.

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Monday, July 16, 2012

Like the new design?

I had a freelancer redesign the Jams Jams site - hope you like it.  I think she did a great job & I just love it!

Still tired this week - I can't believe I may actually be looking forward to getting a transfusion.  My back is aching a bit from the Neulasta shot too and I have some other aches & pains & complaints.  Wah!! 

Its a gorgeous week here in Nashville.  The girls will be busy this week in the afternoons at Cheekwood - Emilia is doing something related to Art I think & Eri's is just a general fun camp.  EB is at school this morning getting her new Fujitsu Tablet computer & her first offiicial email address.  How exciting - she could barely sleep last night thinking about it.

Will keep you posted as the week progresses but it should be a relatively uneventful one, lets hope.  Lisa comes on Saturday!!  And on Sunday we are taking Emilia white water rafting on the Ocoee.  Hope I'm up for that(=  Next Monday starts Round 5 of Turbo Chemo!
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Saturday, July 14, 2012

Feeling Slow

Well this round has been different than the last few.  Usually I feel terrible the day after treatment then bounce back by Saturday.  This time I never really did feel terrible but boy do I feel washed out - like a dishrag really.  I get bursts of energy but they are brief - have to take full advantage when they come about!

You know its not like me to feel lazy - very frustrating!  Luckily its one of those weather weekends anyway that makes you not really feel like doing anything.  We ran some errands today & I'm contemplating painting the shelf Kendall built me for the porch.  Just contemplating, not actually doing yet!  I'm not complaining about the rain - we have had it on and off since probably last Saturday - it is a huge & welcome change from the oppressive heat & dry weather we had for 6 or 8 weeks in a row.  It sure does make my old arthritic knee ache though!

My Mother's Day TV is up & working but Comcast is a bunch of morons.  We'll leave that alone for now!

Yesterday we watched Eriana do her first "public" performance - so cute.  I've posted the videos to YouTube so I hope you can watch them here....

Ain't Nothin But A Hound Dog
Jailhouse Rock
Kid Jail (The Shortest & Funniest Video)
Don't Be Cruel (A Solo!)

There will be lots of activity at the house this week - the painter is hopefully finally coming to paint some of the rooms & so we won't have the blue painters tape marking spots that need spackling anymore.   Hooray.  And Trace Ventures should be here moving the kitchen light & HVAC return & getting the electrical ready in the kitchen.  And the electrician should be here installing ceiling fans in both girls' rooms.  And maybe the plumber will even show up to fix the tiny leak under Emilia's bathroom.  And, if the stars truly align the appraiser will be here to finish our refinance appraisal.  Guess its a good thing I will be here, not in Las Vegas.  Thats a lot of moving parts!!

Hope you enjoy the weekend.

Wednesday, July 11, 2012

Two More Down

Well, two more of the Icky Chemos are over!  Hooray.  That means only 2 more cycles (or 4 days) of this one until the finish line.  Love that thought.

I've been okay this round - very tired so I went to bed super early last night & felt good this morning.  Around 10 when I got to chemo I started to feel pukey again but they hooked me right up with drugs & now I feel tired again but I did manage to eat some leftovers for lunch. 

My blood work wasn't too good this time.  WARNING:  Bunch of boring medical information coming... I did learn a lot more about what they are looking at thought - 3 primary things - 1) white count (the important part of this is the nutrophylls I've mentioned before), 2) platelets and 3) red count. 

I haven't really had any issues with white count except when I had the appendix issue - normally its pretty fair & that is helped significantly by the Neulasta shots (those $7,000 shots I get after every cycle).  Yesterday my white count was 5.2 & my Nutrophylls were 4.27 - both very acceptable numbers.

Platelets are the tough one.  They can transfuse platelets (I had a platelet transfusion when I went to surgery for the appendix) but they don't live very long in the body - only up to 72 hours.  So the transfusion doesn't really help much after the chemo cycle which is when the platelets drop off.  In adult patients they require platelets above 100 to do treatment.  Its really 100,000 but they shorten it to 100.  In pediatric patients & people like me on pediatric regimes, this number is reduced to 75.  So as long as my platelets are above 75, I can get the treatment.  Yesterday mine were 83 - they were down in the 30s when I had my surgery.  So this is really the biggest area of concern in terms of potentially causing treatment delays in the home stretch.

Finally, red count - they tend to look at the PCV number which represents hematocrit (not sure what those mean).  But if it gets to 25 then you need a transfusion.  Mine was 26 yesterday.  Based on this Dr Keedy opted to have me come in next Thursday to check all my blood work & most likely have a 2 unit transfusion.

Bad part about this, I was supposed to go to Las Vegas next week for an exciting meeting with one of our big builder customers.  I'm pretty bummed about not going, but I wouldn't want to be out there & run into health issues that far from home, so I'm okay with the safe approach.  I just feel like I'm letting my colleagues and customers down, but I don't know what I can do about that?

We had a fun Monday night when the Boyds brought us dinner.  They actually like to bring stuff & cook it here & eat with us which is always really fun.  We laugh a lot - Eriana works very hard to keep us entertained.  She's learning some new songs & associated motions at Beginning Broadway camp this week so its fun to watch her practice them.  She has a show on Friday at 11.15 which I'm pretty excited about.  Have to task EB with getting the video camera functioning so we can share her performance!

So, now the official tally stands at 4.5/7 rounds completed which equates to 9 of 14 cycles or 30 of 49 total days of treatment.  In other terms, I have 2.5 rounds left, 5 cycles or 19 more treatments.  The number of treatments one is what I focus on.

We have had lots of rain since my last post, which is a relief to everybody - we were desperate!!!

For photo therapy, a few very random blast from the past pics!
a tiny eriana on a pony ride, not sure when this was
emilia at our hanceville plant around 2008

both girls a couple spring breaks ago - yes that is a live alligator baby she is holding

me & my brother last octoboer in palm beach - this one makes me realize how different i look now

Friday, July 6, 2012

Will it rain???

Well sitting here listening to it thunder outside & crossing fingers & toes that it will rain FINALLY!  Emilia is doing a rain dance.  Its been the hottest & dryest last few weeks I can recall here in Tennessee & we desperately need some rain.

The garden is still thriving in the heat though - corn, tomatoes, basil & cantaloupe seem to really enjoy the heat.  We harvested enough cucumbers for our first batch of pickles which I made on the 4th.  I also made a ton of blackberry jam from all the blackberries we picked Tuesday. Yum, its my all time favorite.  So our spare fridge is slam full with pickles, peach jam, peach chutney & blackberry jam.

We are in a lull on the kitchen project while they fabricate cabinets.  The week of the 16th they will do the electric & plumbing and hopefully appliances & cabinets during the week of the 23rd which is Turbo Chemo week.  Will be a great week though since Lisa is coming & I will also have the excitement of coming home each day to see what progress has been made!

Next week is Yucko Chemo week - thats having labs & seeing Dr Keedy on Tuesday morning then CAV on Tuesday & Wednesday followed by the neulasta shot on Thursday.  I will feel like my head is in a tar bubble from Tuesday noon until Friday noon based on past experience.  Kids have a fun week I hope next week.  Eri is in Beginning Broadway camp at FRA and EB is in volleyball at Harpeth Hall.  Swim team is pretty much over for them now.  Hard to believe its just over a month until they go back to school.

We don't have any plans for the weekend which is wonderful.  Kendall is going to be busy building an elaborate bench for his Big Green Egg.  He built me a great shelf for the porch last weekend.  Its going to be too hot to do anything outside for me I think.  I have plans to paint the shelf he built but not until its cooler.  Tonight is pizza & movie night for us.  I think we're going to watch Look Who's Talking - We're also waiting for the cable guy to show up to install the cable box on the porch for my Mother's Day TV!

Well, hope you all have a great weekend.  I will let you know how the blood work goes on Tuesday.  Cross your fingers for everything to be good to go ahead with treatment next week!

Tuesday, July 3, 2012


So I saw this on Facebook this week - thought it was a bit odd that there is a week just for brothers, but the words and meaning in this particular passage really hit home for me.

See, we grew up in a very small family - we have cousins but we rarely saw them because they grew up in England.  So really most of the time it was just me & my brother growing up.  Our house was out in the country - 5 miles from the closest gas station so it was an endeavor to go to a friend's house.  We got to spend a lot of time together growing up, Mike & I. 

We used to fight like cats & dogs - I made a sport of making him cry for about the first 10 years of his life.  Maybe longer because while I was a hefty, sturdy kid (understatement) he was a little bean pole.  We are in most ways as different as night & day.  I'm introverted, Mike is the social center of everything.  I was never very popular in school, always kind of nerdy (yes I know it hasn't changed).  Mike was Mr Popularity.  I could care less about clothes, hair, makeup stuff like that.  Mike used to take a couple hours to get ready for school in the morning.  I remember when it was his first formal dance & our Uncle David & Aunt Marlena came to visit (whom we barely knew at that point).  He called Uncle David & asked him to rent a special convertible so he could be taken to his formal dance in style. 

Funny kid he always has been.  We have shared some pretty amazing times in our lives, Mike & I.  From the pride of watching each other graduate from West Point to the despair of losing our Mom 12 years ago to the joy of meeting each others' future spouses to the trials and tribulations of parenting, there is one person on this planet I can call my brother.  And I'm damn proud its Mike.  Most of the time(-=

Love you brotha!  Happy 4th of July!!

Sunday, July 1, 2012

Halfway in the Rear View Mirror!

Yeah baby, looking at halfway thru chemo in my rear view mirror this weekend.  49 total treatments.  28 completed.  That is a hell of a feeling.  I have 6 more "cycles" or 3 more "rounds" depending on your terminology & how you count.  This week is off & I will hopefully start the next round of CAV on July 10th.  And we will continue to keep our fingers & toes crossed that we stay "on time" to finish all of this on September 21st, which coincidentally is Emilia's 12th birthday.

Still feeling the effects of this week's turbo chemo as I call it but for the most part I'm feeling good.  Its too damn hot here to do anything so that gives me a good excuse to sit around(=  Kendall took the girls to the pool yesterday - I am probably one of the biggest pool/sun lovers I know but one thing chemo has taken from me this summer is the ability to control my body temperature effectively so I have had to miss all the pool time I normally enjoy in the summer.  Ah, next summer.  So while they did that I went & ran errands, got my Neulasta shot, & had a very nice & relaxing manicure & pedicure at Tina's in Green Hills.

Today we are just hanging out around the house, some more errands to run.  I made lavender mint bath salts yesterday so we need to get them bottled up today.  We've also been making tons of "peach stuff" since I bought the motherlode basket of peaches at the Farmers Market last weekend.  Lots of peach jam in the fridge/freezer, peach cobbler, peach chutney.  Probably I will make some peach ice cream today & Kendall has a half beef brisket on the big green egg for dinner.  Happy times.

The window is gone & the brick is done - looks like there was never a window even there in the first place.  Amazing.  I think they will take the plastic down tomorrow which will be good because its blocking a lot of the light that normally comes into the house.

They also got my Mother's Day present mounted!  Hooray.  The cable guy comes Thursday to hook it up & then I won't be watching the "brick channel" anymore.  The screened porch is one of my favorite places in the house & I will be super excited to be able to watch the news or whatever out here.

Oh, the garden is doing great!  The tomatoes just love the heat.  Our basil is taking over the place - we have volunteer tomatoes, peppers, basil & cilantro too.  The cantaloupes are getting bigger & bigger & there are some watermelons on the vine too - these are very fun for the kids because when you lift up a leaf you never know what you might find!  Same with cucumbers - we've had some delicious ones this week.  There is corn on the stalk.  Tomatoes are starting to ripen - and we even still have some lettuces coming along.  The carrots, radishes, & beets are not doing so great.  We have struggled with those.  And we have planted our pumpkins & are starting to plant round 2 of the zucchini, cucumbers, etc. for harvesting later. 

Enjoy your weekend!!!