Friday, August 31, 2012

It seems real!

That this is actually going to come to an end soon!

I saw Dr Keedy & she checked my labs today. My bloodwork was excellent. Still a little anemic but plenty good enough for treatment next week. My white count came back up to normal, my platelets are back in the normal range & all the other functions were great!

So chemo is on for the last time next week. Woohoo. And i talked her into letting me take the second and third doses of Mesna by pill next week which cuts about 2 hours off each days chemo time!!! Woohoo again.

She also said we could go ahead & get the first set of post cancer scans scheduled. Did you read that? Post cancer!

At the end of each visit the doctor fills out a form that tells the schedulers what to book for you coming up. For seven long months each time this has been more chemo, more labs, more yuck. But this time my form didn't have any more drugs or chemo on it. I have to say taking that form to Debbie, My favorite scheduler & a cancer survivor herself, was one of the best feelings I have had in a Long long time. The staff at Vanderbilt has truly become a support network for me. They celebrate the good and the bad right along with me. I know them all by name, I know about their boyfriends, their kids & their pets, many of them I know their hopes, dreams & fears -- and they know mine. Every time I drive on the campus I just feel so incredibly fortunate to have this place of healing & hope in my backyard.

So while we need to see the scans to be sure there is no nasty cancer poking it's head around anywhere inside me, it feels like I am going to survive this journey and that a return to my normal self and my normal life is imminent. And that is the reason I have been fighting this battle!!!

Wednesday, August 29, 2012

What a difference a day makes!

And a bunch of new blood! I feel like Judy again. Well more like Judy. Looking forward to a fun 5 days before I start the FINAL round.

If you're coming next week, the location is the 2nd floor of The Vanderbilt Clinic in the Cancer Infusion Center. Tuesday thru Friday I will start around 8.30. Not sure yet what time I will be done ech day, depends on some things I have to check with Dr Keedy about Friday. Please don't feel obligated to spend the whole time with me. It's VERY boring & I'm quite happy with whatever time you can spare!  Here is who I think is coming each day...

Monday - Christine (CB, it's a slightly different location Monday)
Tuesday - Angie J & Bob
Wednesday - LML & Angie V
Thursday- Lisa A
Friday - Jenn T

I'm at the point where there's no way I'm not finishing this so if your plans change & you can't make it, don't feel bad!  I will keep the faith, carry on & cross the finish line!

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Tuesday, August 28, 2012

Getting more blood

Well, its really no surprise, as much as I was hoping it wouldn't be the case, my red counts are super low today.  My Hematocrit is 20 - the lowest it has been is 19 so thats pretty stinkin low and explains my extreme fatigue in the last few days. That also means I have to get 2 more units of blood today, which takes forever.  My platelets are also really low - 59 - which is the lowest they have been by far - nothing really to do about those except hope they jump up to above 75 by Friday so I can get chemo next week.  Cross your fingers for that please.

I also saw Dr Holt, my orthopedic oncology surgeon, this morning for a routine follow up.  She said my scar looks good but there is a lot of scar tissue.  Nothing really to do about that.  In some ways it doesn't even seem real that all this started with surgery back in January!  She said the leg swelling & "fat foot" is probably going to continue for a while but eventually should get better.  She said its part of the healing process but has been made worse by the radiation therapy I had.  That also seems like another lifetime - when I had radiation every day for 6 weeks back in the spring. 

We discussed follow up visits and she explained that the chance of either recurrence (the cancer coming back at the original site) or metastasis (the cancer coming back in a different place - most likely my lungs) is highest in the first 2 years, which I knew.  This is why the follow ups every 3 months for 2 years.  After 2 years the chance of recurrence or metastases goes WAY down which is why the follow ups become less frequent at that point.

She explained that the scans I get every 3 months will be a CT of my chest and abdomen and an MRI of my pelvis which includes the original surgery site.  So I'm anxious to ask Dr Keedy when I see her on Friday if we can get the first set of those scheduled for the week after chemo - why wait! 

I told Dr Holt I have no intention of this coming back and that I am not planning to give her another chance to cut on me.  She laughed and said Hell No, its not coming back.  Gotta love that I have doctors with so much personality. 

So kind of a disappointing day with the blood counts but not really surprising.  We are going to Parent Night at Emilia's school tonight.  Here is a picture of Eri at gymnastics last night.  She had a blast and can't wait to go again -

And one of my sweet girls at breakfast yesterday.



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Friday, August 24, 2012

Its a Lose-Lose -- or is it???

Its been a tough week, I won't lie.  I'm pretty sure my red blood cell count is at rock bottom - we will have it checked Tuesday but until then its a major effort to accomplish the simplest tasks.  Tired doesn't really describe it - its not like I go to sleep at night & wake up in the morning & feel rested.  Taking  a nap would make no difference.  Its a fatigue deep to my bones.  Its the kind of fatigue that makes me lean on the counter to peel potatoes.

I think I've finally reconciled why this is so hard.  I have this constant mental war going on.  I have to make this choice all day every day - choice one is to do what I need & want to do physically like go to work, make dinner, take care of the house, cook breakfast, etc.  The downside of choice one is that I am left so physically drained I can barely function - and I take that out on those around me unfortunately so we all end up miserable!  Not a good situation.

Choice two is to physically take it easy which means basically sitting in my comfy chair on the porch and do nothing.  The downside of choice two is that I end up feeling guilty because I'm not accomplishing what I think I need to!  This doesn't make me take it out on the rest of my family but it does make me feel like I'm not contributing at home or at work.   And I've realized thats where a lot of my self worth comes from.

So, here's the reality.  This feels like a lose lose - and its not something that anything in my life has prepared me for.  But, like my sweet husband told me, I have to play the cards I'm dealt - at least for another month or so until the effects of the final treatment round wear off.  And the cards I'm dealt dictate that I have to accept I cannot get stuff done.  I can't be at meetings at work and in the office 8 hours a day and go to the grocery store and cook dinner and clean up the cat litter and do some laundry and make a full breakfast for the family and make the beds and bake cookies and line the cabinets and all the other stuff I feel obligated to do.  I just physically cannot do it - at least for a while. 

So I'm going to try to force myself to take it easy.  I need enforcers around me - people to remind me that I've committed not to overdo it.  Thats definitely a lasting lesson from my experience with cancer - that I sometimes need to rely on those around me to "make" me do things.

I think a lot of people think that I feel obligated to do so much in a day because I want others to see me as an overachiever.  Its not about that at all - its about me and the satisfaction I get from being able to do more than other people can in a given day.  I've got to let that go.  I'm going to let that go.

So, this is a pretty  introspective post - sorry if its TMI and too deep into my psyche. I'm really going to give it my all to NOT look at this as a lose-lose but rather a win-win. If I take it easy until my counts are better and chemo has worn off then I win because I will probably get better that much faster and my family and friends win because I won't (hopefully) be the wicked witch of the west.  It may mean I have to ask for more help than normal, but I am learning to do that too.

Tomorrow is EB's first triathlon - Kendall is going to taker her & I'll stay here & hang with Eri. EB did great at the first cross country meet of the season yesterday - I was so proud of her.  She did her 2 miles in 18:10 which is 7 minutes faster than her first meet of last season.  I told her, truthfully, that she ran it faster than I ever did even at West Point before I blew out my knee!  It was hot yesterday too which didn't help.  I also met a really special FRA Mom yesterday who has 3 kids ages 10-16 & has Stage 4 breast cancer.  She's grown her hair back but continues her fight with chemo - that seems to be working.  Looking at her, one would never know she was battling cancer - it was a good reminder for me that you never know what someone is dealing with.  I've kind of come to assume that if somebody has hair they aren't battling cancer but that is such a stupid stereotype!  Anyway I hope that EB & Grace (this lady's daughter) can become friends since they have something so big in common.

Eri is absolutely loving Kindergarten.  She has a fabulous, experienced teacher named Mrs Kaufman.  I think Eri would do anything Mrs Kaufman told her to do (why are kids like that with their teachers but not their moms?).  She bought her lunch in the cafeteria for the first time yesterday which was a big milestone.  They are on full days now so its full speed ahead.  I can't wait til she starts reading.

So thats what is going on here!  Next week I have a check up with Dr Holt (the surgeon) on Tuesday & will also have my labs checked.  On Friday I will see Dr Keedy & have labs again to get the go ahead for chemo to start on Sept 3.  Many people have asked me if I'm done with chemo does that mean the cancer is gone. Thats a really good question.  Here's how I think about it - I had a small tumor that was completely removed & had not spread so there is no cancer in me right now.  The fact is that my type of cancer is virtually guaranteed to return if chemo is not done.  So doing the chemo regimen has reduced my chance of recurrence from around 99% to around 30%.  After chemo finishes, my expectation is that I will have a CT of my chest, abdomen & pelvis in mid-late September.  That will confirm (again) that there is no metastases or new tumors anywhere.  This will be repeated every 3 months for a couple years (the recurrence chances are much higher in the first 2 years so the monitoring is very frequent).  I will also continue to be monitored every 6 months by breast MRI or mammogram as that risk from my family history is still there...  I'm going to try like hell to assume that this isn't coming back & not stress myself out every 3 months when the scans happen.  But human nature is that it will definitely be a stressor.

OK, you're probably tired of reading. Have a wonderful weekend!  If you're looking for me, I will  be on my porch or my couch for most of the weekend...




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Tuesday, August 21, 2012

Everybody's Invited!



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Save the date!

September 30 in the afternoon will be the no mo chemo party at our house. Everyone and anyone is invited - we will have a jumpy house, a keg & who knows what else. Invites will be coming but consider yourself invited!!

They didn't have to do this!

I wanted to share this communication from Southwest Airlines.  I traveled a ton last year & finally right at the end of the year made their A-List status - I was pretty excited.  A couple weeks later this whole cancer thing started & so I haven't been able to travel this year as you know & also haven't been able to take advantage of the A-List "perks".  So Amber suggested I ask them to extend it for a year.  I figured what the hell - they will probably say no way but I will ask.  Here is the letter I got back from them.

As you can see, not only did they extend my A-List for the whole of 2013 but they wrote such a nice, kind note to go with it.  Customer service is so important - something I have come to appreciate professionally in the last few years but its nice to experience it personally as well.

I feel a little bit better each day - still fighting the remnants from that damn virus - I just can't seem to kick it & by the end of each day I'm wiped out.  But at least I can get up & go about my day & go to work, thats an improvement from this weekend!

Next week I will get labs checked on Tuesday & probably have to have a transfusion.  Then Friday I will see Dr Keedy to get the blessing for my treatment to start on the 3rd.  I have a bunch of folks lined up to go with me that week but if you still want to experience chemo (& you know this is your last chance!!), let me know - I'm sure some folks would love to not be there all day or we can always have more than one person. 

Amber has kindly volunteered to chair the Nurses Celebration Party on the 7th - so if you want to help out with that just let me or her know. 

Hope to have a day for you soon for the NO MO CHEMO party at our house.  There is so much to celebrate - mostly our wonderful friends & family & support that we have received.

Have a great day!!!

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Saturday, August 18, 2012

Dragging....

This last treatment of Adriamycin (Red Devil) & Cytoxan has me really dragging.  Thank goodness there aren't any more.  Just kind of hanging out this weekend waiting for the extreme fatigue to pass & hopefully for my appetite to return.

Its gorgeous & cool (for us) here so its a perfect day to sit on the porch & watch the day go by!

I'll keep it short - have a great weekend!!

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Thursday, August 16, 2012

Week of September 3rd

So we are confirmed for the Final week of chemo to start on Labor Day, September 3rd. Need some help that week if anybody is able.

Kendall signed up to run a half marathon on the 3rd so if anybody wants to volunteer to watch the brats for a few hours that morning we would appreciate it.

The other thing we need are "chemo chaperones" for Monday, Tuesday & Thursday if anybody is willing? It's about 9 am til 4 pm but I will take whatever time you can give.

The final, fun, thing I need help with is someone to plan & execute a small. Party for the staff on Friday afternoon. This party is NOT about me but it's about the nurses, techs & receptionists who have been so amazing these last 9 months.

So let me know if you want to help with any of these! I'm pretty sure there won't be any more schedule changes. Unless I have another appendix!

Wednesday, August 15, 2012

Its been a good day!

Well, my platelets were high enough today to proceed with chemo this week.  Thats good news - as much as I hate getting it, I love getting it out of the way.  So today I'm almost done with Cytoxan, Red Devil & Vincristine and almost done with the 2nd unit of blood.

Julie B has been here with me every step of the way which has been wonderful.  So nice to have company to keep me from sprinting on out of here.

Happy to report I am done with Vincristine FOREVER.  After tomorrow that will be the case for the Cytoxan and Red Devil too.  Tomorrow my neighbor, Angie, is coming and so is Pam - two knitting experts - so I am planning to get double instruction!

Looks like the next and final round of Turbo Chemo (the 5 day treatment) will be Labor Day week.  Will keep you posted about needs for volunteers that week!

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Tuesday, August 14, 2012

Good news & not so good news (as usual)

So, the not so good first - my red counts are really low again.  White counts are low too but the neutrophylls (the part of the white blood cells that matter for chemo) are fine.  So, treatment for this week is still uncertain.

The plan is to go in the morning for more labs & to get a transfusion.  The transfusion will make the hematocrit (or red blood cells) good enough for treatment.  The labs will tell us if my platelets have jumped up enough to do treatment this week or not.  If not we will do it Monday & Tuesday next week.  So more to come tomorrow on that.  I feel very tired - every time I walk it feels like I'm climbing stairs - but honestly I've kind of gotten used to that feeling so it doesn't feel unusual to me.

The good/great/stupendous/awesome/amazing news is that Dr Keedy feels completing the 6 cycles will be sufficient and that the 7th is not necessary.  That means I get 7 more chemo treatments and I'm done.  She feels the research doesn't overwhelmingly prove that the 7th will give a tremendous benefit - in fact the research doesn't really address number of treatments at all - it focuses on which drugs to use and time between treatments.  So while it is a bit of a gamble to eliminate the 7th treatment and not follow the tested protocol exactly, Kendall, Dr Keedy & I all feel that risk is acceptable in exchange for being finished with this and moving on with life.

So, that means if treatment proceeds this week, I will finish most likely on September 7th.  If it doesn't proceed this week (I'm betting it doesn't), then I should finish on September 14th.  We went ahead & decided to put an extra week in between this treatment & the next assuming I will need another transfusion.  The end is in sight, the goal is within reach.  A month from today I will be finished with this phase.

After that I will get the port removed and start the every 3 month checkups.  And we will be planning a BIG ASS PARTY for the end of September.  We will provide a date soon but I'm thinking a Saturday afternoon - all of you who have followed this journey, read my crazy rantings, supported us, worked in our garden, helped us, fed us, driven me, listened to me vent, sent cards, watched our kids, covered for me at work, etc. will come over & just hang out.  Think jumpy houses for the kids, a keg of beer, & lawn chairs.

I will let you all know tomorrow about this week's chemo & once I know that, I will know the dates for the next AND may I say, FINAL round so we can put some names on the calendar for that.

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Sunday, August 12, 2012

Feeling Better! And Pics from Disney...

Finally I seem to be on the back side of this doggone virus.  It really had me down for a couple days but I'm feeling much better.  Thanks for all the notes & well wishes - much appreciated!  I still have a bit of a cough & chest congestion but hopefully that will disappear over the next couple days.

Kendall & I were able to go out to dinner last night & to see The Campaign.  I haven't laughed that hard in a while - we were both in tears.  It was a really fun night for our last night as DINKs.  We are looking forward to meeting with Dr Keedy on Tuesday morning.  And I'm looking forward (as much as possible) to getting chemo out of the way this week.

Now, what we are REALLY excited is getting our kids here in a couple hours!!  They have had an amazing and fun time in Florida - I am so thankful that my family has been willing and able to make that time so special for them.  But we really miss them and I think they are starting to actually miss us too.  We will enjoy the day together today then I'm taking Monday & Tuesday off to finish getting ready for school - we have some shopping, lockers to decorate, backpacks to sort out, doctors appointments, dentist appointments, etc.  Plenty of fun stuff to do together so EB is ready for a Thursday start & Eri for a Friday partial start!

Here are some photos of them enjoying their time in Florida.l  Looking at these photos makes me appreciate my brother and sister-in-law so much.  I hope one day I can return the favor!!


Uncle Mike, Julianna & Eriana matching at Disney World


Julianna & Emilia on a ride


Eriana after 14 hours at Disney - still going strong


The cousins having fun




Emilia & Julianna - do you like Emilia's imitation of Goofy?


She is so beautiful


Looks like fun.  Notice she is wearing a belt - Uncle Mike has a rule
that if you have belt loops & don't wear a belt you have to pay him a dollar



Makes my heart skip a beat to see her in a veil


Aunt Cara gave them each a $10 allowance to spend at Target
& they chose these matching swimsuits.  Adorable.

Love this line up in front of the Haunted Mansion.


And this sums up probably how they will be feeling when we pick them up... 
This is Eri on a boat ride in the Everglades.  Flat out exhausted.  Priceless.


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Thursday, August 9, 2012

Stupid virus! And a finished kitchen!

It was bound to happen eventually, I have gotten sick.  So far its sinus, headache, body ache, sore throat & an icky cough.  I didn't have a fever yesterday but today I have a low grade one.  Please cross your fingers it doesn't get to 101.5 when I have to make the dreaded call to the oncologist & tell them I have a fever & then wait for them to tell me to go to the ER.

The kids come home Sunday - I need to be back to 100% by then!  They are in Disney World tonight & tomorrow with my brother's family.  Lucky ducks!  I can't wait to see pictures.

In brighter news, our kitchen is finished!  We are in love with it - still not thrilled with the ice maker but we will work thru that over the next couple of days I hope.  Here's a pic.

Not much other news to report! 





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Monday, August 6, 2012

Scenes from a Kid's Vacation

Well, Kendall & I are enjoying being empty-nesters.  Amazing how much we can get done and how many things we find to talk about when there aren't any interruptions.  I actually am married to a very interesting person - who knew(=  Just kidding, I've known that for a long time.  And gosh, there aren't toys strewn about the house - how boring.

The girls are happy happy happy in Florida. I'm sure they will come back brown as can be - I know they have spent most of their waking hours in the pool.  This weekend my sweet brother & his adorable family picked them up from my Dad & Maryann's.  So they are now over in Jupiter enjoying the good life on the other side of the state.  I believe a trip to Disney is in the works for later this week if they can all 4 behave themselves.  I just absolutely love how close the 4 of them are even though they see each other only a couple times a year.  I treasure the time they have together & the 4 cousins growing up with strong relationships with each other is immensely important to me.

Here are a few photos from their time in Florida.

Beach time!

Diving lessons in Papa & Mimi's pool

At the children's museum in Naples


I love this picture of Maryann (Mimi, "Mom" to me now) with her grandkids.
The handsome young man is Maryann's grandson Nick.  Julianna (my brother's oldest) is in the red.
EB is next to Mimi.  Eri of course is in the black & Caraline (My brother's youngest) is in the front.
You can totally tell which 4 are related, right!
Maryann has 2 more granddaughters, Taressa & Carley, who live in Colorado.
I often reflect on how incredibly lucky my family is to have been joined with Maryann's wonderful family -

As for me -- you know this IS all about me (-: -- I'm feeling good.  No more nausea & not taking any meds which is a nice feeling.  I get to work this week - actually in the office.  Hooray.  They are installing our cabinets tomorrow & our appliances Wednesday so I also get to go home & organize cabinets.  Those of you who know me well know how much I love stuff like that!!  Kendall is in Kansas City today & tomorrow so I'm a single woman for about 48 hours.  Very quiet in the house this morning.  Its a really weird feeling to be all alone in the midst of the trappings of a life that normally has 3 other people in it with you.  Sort of out of body.

We worked in the garden some this weekend - taking out corn & a few other things that were past their prime.  Some of our beds are looking so full and wild - I just absolutely LOVE it.  We also went to the Farmers Market & bought some new plant material (perennials mostly) which we planted yesterday.  It was cooler this weekend but so incredibly humid - we were both soaked thru after about 10 minutes.  Of course I'm so pathetic I work for 5 minutes & sit for 5 minutes.  I am totally fed up with not having any endurance or stamina.  I hate that.  Used to be able to work outside all day long & have that tired but satisfied feeling.  Now an hour makes me feel like I am going to pass out.

We cooked some this weekend - grilled on Saturday night & Kendall made a delicious Thai dish last night that we both enjoyed.  I made homemade salsa yesterday with fresh tomatoes, parsley & jalapenos from the garden.  No baking - its not as fun without the kids. 

The girls go back to school, sort of, next Thursday.  Well, EB does - she starts Thursday August 16th & pretty much goes full out from there.  Eriana has this weird schedule for the first week.  She goes for a couple hours on Friday morning then half days the week after before finally going to full time.  I remember she did the same thing last year & I hated it.  Just get on with it!!  Thats how she feels too.  Thankfully Payton will step in & keep her company.  Next week will be busy for us though - doctor's appointments for the girls, dentist appointments, getting odds & ends they still need for school (thank goodness for uniforms!), and soaking up our last couple days together before we are back at it! 

Emilia has been training for a month or so for cross country so she will start practice on Monday for that as well.  She's done a great job being responsible & committed and we are really proud of her.  She is also doing a triathlon August 25th - her first.  And she is going to take tennis lessons starting late August.  Eriana is returning to gymnastics at the end of August.  That cracks me up because she has none of the daintiness or lightness on her feet that you see in the artistic gymansts - but boy does she have power & attitude!!!

Thats all the news thats fit to print today.  Hopefully no medical news til next Tuesday when we see Dr Keedy.

I just realized this is my 100th post.  100 sessions of therapy!

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Friday, August 3, 2012

Therapy Dogs

Lisa took this picture this week of me with Max, one of the therapy dogs that visits the chemo center sometimes.  I love Max because he is a Weimeraner like Jessie, our dog.  He likes to give big wet kisses. 

Its been about as good of a week as possible this week.  We have laughed a lot and told a lot of good stories.  Lisa & I were saying yesterday how we don't ever get this much friend-time so it has been great - as long as we can forget the reason we are getting that time! 

Luckily the treatments haven't made me feel sick this week - just very tired but with no kids here I have been able to go to bed early & sleep late - doesn't do much for my Olympic watching but something's gotta give right!  So I've been able to eat a couple good meals each day & that has also helped me feel stronger & more able to take the treatments.

We are rolling along with the last one of this cycle now.  Its not quite real in my mind yet that I may have only 7 left.  Sometimes that 7 feels like I will never be able to do them all & then most of the time that 7 feels like a walk in the park compared to where I have been.  Right now, assuming we don't do the final 7th round, I'm thinking I will finish probably Labor Day week.  That means I'm starting to plan travel for the fall & winter which makes me feel like my life will be back to normal -- and that is a great feeling.

I am sure it will take several months after chemo to feel normal again & have hair & get all my energy back, but the path to that is within reach!  Finally.

After today, I will have had 35 treatments of chemo, 4 blood transfusions, 1 platelet transfusion, 2 surgeries, countless injections & who only knows what else.  Its a lot to go thru no doubt but I have every confidence with every fiber of my being that after the final 7 treatments this cancer is gone from me entirely.  I am certainly not in fear of it returning - instead I am looking forward to fully living the life I love!!  Its a good spot to be in!

Thanks everyone for the notes and visits and cards this week - I keep saying this but it helps tremendously.  it really does!  If anybody wants to come with me on the 16th of August, I am looking for a volunteer. 

We are just hanging out this weekend, going to enjoy each other's company, cook some good food & relax!!

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Wednesday, August 1, 2012

Quick update

Just wanted to let everyone know I'm doing fine this week. Having Lisa here makes a world of difference. And today is hump day! Only 2 more treatments this week after today. And get this - after this week is done I have only 7 (or maybe 14) treatments left. Yes, the end is definitely getting closer.

Lisa has been wonderful keeping me company & making me laugh. Had a visit from Roger Monday too which was nice. And Julie B is coming to see us today, yay! And this cycle I seem to have the nausea Meds right so I have been feeling decent even able to eat dinner & breakfast. My blood tests wee okay Monday, good enough for treatment but not stellar even with the extra week off.

After this week the next step is for Kendall & i to meet with Dr Keedy on Tuesday August 14th to discuss whether we do one more round or two. As you know I'm leaning towards one which is 7 treatments. But we will fully discuss all the pros & cons before making a decision. I will start chemo for Round 6 on Wednesday August 15 if anybody wants to come on the 15th or 16th let me know. Those are short days from about 9.30-12.30 or so. Of course those treatments will depend on my lab results on August 14th.

So far so good this week. Thanks for the thoughts & prayers.