JAMs Jams. Pure. Real. Fresh.

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 r...

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...

 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 h...

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 ...

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 i...

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 experienc...

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...

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 w...

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...

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...

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 o...

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 ...

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...

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....

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 n...

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...

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 Ca...

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 ...

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 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 cou...