Lymphoma Diaries: Chemo Friday – and the one where my hair starts falling out

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Today is day 22 of Chemo – but only my second treatment/infusion of brentuximab. My appointment was at 9:30 but I got there at 8:45 and was hooked up by 9. We blew a vein. My poor nurses – my veins are very small, rolly and Self-protecting! Anyway, she got it right in on the second try and we were off. My momma came with me and, of course – obligatory selfie with myself:

I woke up at 5:45am and knew I wouldn’t be able to fall back asleep so I just got on up and finished packing for the beach a little and took a shower. A bad bad thing happened in the shower. I was using my nice smelling Monat revitalize shampoo, and I only wash my hair 2, sometimes 3 times a week unless I run and get sweaty so this was day 3 of not washing. (I shower – I just don’t always shampoo my hair! My hair stylist approves. My color lasts longer and it’s healthier for your hair to let the natural oils build up and also for growth and for lack of heat styling damage…)

Anyway – so nice happy smelling shampoo. Let it settle in. Then rinse. My hair is just to the bottom of my bra strap (pretty long) and I have more hair than Oprah so it takes forever to wash, rinse, repeat, condition and then dry & style. (Another reason I only do it once every 2-3 days…) So I turn around to rinse and let the warm water run through then I start wide combing my fingers through and come out with handfuls of hair no longer on my head. Now, the less you wash your hair, the more will come out when you wash it and since it had been 3 days I thought – oh this is just build up of the dead hair falling out. But it kept coming. To try to convince myself it wasn’t as bad as I was imagining, rather than letting it collect in the drain, I stuck the handfuls to the wall of the shower. Ouch.

That’s quite a bit. And then I tried to just blow dry without brushing it or over taxing it but this is what I pulled out of the brush in one styling. So – since yesterday because that’s when I cleaned the brush.

Now – we are on our way to the beach. I have an appointment on April 12 to do my color and a cut – I just had it cut a week or two ago. But we didn’t do color just in case this were to happen (but it isn’t supposed to happen!!! I have the “good” chemo!!! The on that is less likely to cause hair loss and thinning…) and well, it’s happening. Boo. But this is why I needed the color:

Suddenly I have LOTS of silver/white hair. Well, less now that it’s falling out. 😩 and on the drive every time I touch my hair, a handful of strands comes out.

So I’ve thrown 3-4 handfuls of hair out the window on this road trip and my DNA is now scattered all down Interstate 65 South across the great state of Alabama.

Honestly? I cried in the shower and I cried again just now thinking I don’t want to lose my hair. I have great hair. I’m a LEO for goodness sake. What shall I do without my mane.

But for now, I’m going to rest at the beach. I’m going to rest and meditate and read and relax as much as possible with my dear ones. I am encouraged by my late Pastor Granddad’s favorite verse. “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.” Romans 8:28

Lymphoma Diaries, Post-Chemo day 20

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Lymphoma Diaries, Post-Chemo day 20

So. I’m just gonna lay this out there.

Cancer SUCKS BIG FAT ROTTEN EGGS. I have other choice words but this is a family blog.

I was fine the first week, fine like no effects – day 7 I was tired. Days 8-11 I had nausea and tummy issues and generally felt bad – I’ve run a fever off and on, almost always at night, 3-5 days a week. Most day times are fine. But – I have a 3:30pm energy expiration. After 3:30 I still function just not on my normal level.

Tomorrow is my first post-round-1 appointment to check all my blood levels and see the oncology NP. And tonight I feel awful. Why? Why on day 20 after so many good days??? I have a fever. I was sick last night and I had a fever all night. I’ve had swelling of the hands and feet since Sunday. They are itchy and I can’t wear my wedding rings my hands are so fat. I’m not a happy camper.

Now, I’ve been upbeat and happy-go-lucky about all this and blown off any side effects. Until now. Tonight I’m having my own personal whinge-fest. Whine whine whine & bellyache. Boo. Tomorrow will be better. Friday at 9am I have round 2 infusion of Brentuximab. Friday at 11am I have a bond hearing. Friday at 2pm I am going to the beach.

The beach will soothe away my cares. But today I feel kinda crummy and I feel like maybe it’s the first time I’ve really whined publicly about it but sheesh. I’m fighting here and some days are harder than others. Like today was GREAT! All week has been. Busy at the office, doing the lawyer life thing and then momming after and enjoying the puppies and babies (teenagers are still babies, no?) and my very sweet, very handsome husband at night. But tonight I feel bad and I’m grateful for puppies and babies and my Willie. ♥️

Sundays are for Singing

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Sundays are for Singing

So first we will get the singing out of the way: I do not like watching myself on video. I need to work on my facial expressions while singing. This was one take of course because I mess up 10 times but when I listen without looking it sounds fine so this is MY version of John Prine’s “Angel from Montgomery”… this song has been covered and changed and re-recorded so many times that it’s hard to know what version I love the most so I made up my own.

 

Now you can see that we make laundry and house cleaning a priority over music in our house. (NOT!)

I started the morning yesterday with a nice walk before the storm with my doll of a friend, Katie and as luck would have it there was a pot of gold (actually a very soggy $20 bill) on the sidewalk – there was no one to return it to at 8am so we bought coffee and paid the rest forward in the tip jar at Swift & Finch (our local coffee shop).

Will and I went on a date last night to The Melting Pot in Kennesaw. It. Was. So. Good. Cheese fondue with bacon and dippers galore, a delicious wedge salad, and a giant plate of meat and pasta and veggies to cook in our “Coq au Vin” broth.

I also bought a whole bottle of wine that is twice as expensive at the restaurant as the store but it was worth it and delicious.

Just before dinner we ran to The Shane Company across the street to get my prongs checked on my wedding ring and they cleaned them. Gorgeous. Still love having these on my finger.

My kids attendee their daddy’s wedding last night in Alabama. They are gorgeous, no? They look just like their father.

So that’s the story, morning glory. We overslept and I missed church for the second time in many many months. This week isn’t too over scheduled, we have a Boy Scout meeting for the New Mexico trip to Philmont this afternoon, and I have a few court appearances and appointments at the office – Friday morning I have round two of chemo/immunotherapy infusion at 9 and then a bond hearing at 11. Then Will is taking a half day and we are headed out on Spring Break!

Next week is Palm Sunday, the beginning of Holy Week. I have scoped out a church to attend before we praise God’s creation of the seashore the rest of the afternoon/evening – Our Lady of the Gulf Catholic Church in Gulf Shores (which is conveniently only one block from one of our favorite restaurants down there – Tacky Jack’s!).

Have a super week, everyone! I haven’t been feeling great the last couple days but mainly, the first week from getting the infusion was actually really ok but days 7-11 I felt really bad. More tired and major tummy issues. I have tummy things all the time but not bad – except days 7-11. That will fall right on Maundy Thursday through Easter Monday so I’m hoping for some grace. Thank you for your kind prayers and cards and calls. ♥️

Lymphoma Diaries: When Momma has Cancer

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My kids are really really really cool. Like, totally cooler than I ever was at their age and definitely cooler than I am now. Today was picture day:

Carson Claire (12) is wearing my (size 9.5) shoes… and though they are heels she is actually a smidge taller than her brother, Cole Patrick (13). In case you don’t already know they are a year apart (“Irish Twins”) – simultaneously arch enemies and inseparable bosom buddies.

They remember when Momma had cancer 6 years ago – but that was half of Carsie’s life ago – we didn’t make a big deal of it and I had radiation only during round 1 of lymphoma in 2012 so I wasn’t sick and had very few side effects.

This time is a little different. For the last few months things have been stretched thin here. Momma is tired. Momma forgets or puts things off. C&C know Momma is not 100%. They can see it, feel it. They are worried. No matter how normal I try to make it all ok, they worry. They are wonderful little caring humans.

In the car this morning somehow we got to talking about them when they were little. I ended up telling them about how I thought I was doing everything wrong every day by them when they were little and I was feeling really emotional remembering all the years of momming and the hardness of every day, sometimes every minute, with two toddlers, two preschoolers, being a single mom (I won’t mention two middle schoolers!)… and then thinking how grateful I am for every difficult minute because of the great great reward I experience in my children’s giggles, smiles, laughs, triumphs and silliness, even as teen/tweens.

I caught Cole’s eye in the rear view mirror as I was feeling the weight of all those years of being THE Momma, feeling like I messed up all.the.time – and that boy – he gave me the biggest most fabulous 13-year old boy grin ever – and I looked at Carson and she cocked her head a little and said with pitch perfect sarcasm: “Momma – We have all our digits. We have not been arrested, and we know how to read and write our names and our address and phone numbers. I reckon we’re turning out alright.” Oh cue the tears. I love a witty kid. And I say so and wonder out loud how they got so cheeky – they say, in unison (and with FEELING!) without even a glance between them: “We learned it by watching you!!!” Just like that weed-smoking don’t-do-drugs PSA from the 80s-90s.

So – yeah – the house is a wreck. I don’t cook. Our laundry machines are working again, but on the whole – Momma with cancer is doing ok thanks to a lot of laughing from the #supertwins (The SuperTwins was a fake made up tv show that Cole and Carson starred in as young children. “Never fear – the SUPERTWINS ARE HERE!” Cole’s superpower was superspeed and agility. Carson’s Self-professed superpower was optimism (which, if you know carson that will make complete sense).

I swear middle schoolers are a task, indeed – but darn if my life at home is not entertaining.

Lymphoma Diaries: One week

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I have been dying to learn the song “One Week” by the Barenaked Ladies on my ukulele for a while. I love that song. Early on in our dating, I impressed Will by knowing all the words when it randomly came on the radio. (Can I get a set o’ better clubs, you know the kind with tiny nubs, just so my irons aren’t always flying off the backswing…?”)

I like that song because it’s catchy but it’s also funny and some of it makes no sense but the story is about the difference a week can make.

Last week I felt ok on Sunday. I ran a low fever but I drove to Alabama to pick up my kids and worked this week all week and for the most part was functional. I had court every day and even got to visit briefly with my colleague & local legend, Bobby Lee Cook:

However, Thursday I was starting to feel poorly around lunch time and I have been having the hardest time finding something I can eat and not suffer. I’ve tried chicken soup, chicken salad, bagels, fruit and cereal, yogurt… but I just feel awful. And I can’t manage to stay awake for more than an hour or two.

I did get to go see my kiddos in their last competition of the year in Tifton (they won best vocals, best costumes, and second over all.) However, it was a 4 hour drive and I was sick most of the way there. I had to get my friend Melanie to drive my car for a while. We stayed in a hotel – but we were sandwiched between a crying infant next door on one side and barking dogs on the other so I didn’t sleep much.

I don’t know if/when this will pass but I am looking forward to it. I want to learn that song but the malaise and the fatigue and nausea are not terribly fun. What IS terribly fun is being a show choir mom – see:

And because Sundays are for songs …. here are 3 minutes of pure dorky entertainment from me and my ukulele:

Sundays are for Songs

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Disclaimer – I appear to have a lot of chins in this video. Alas. This is the real me. Authenticity is of prime importance, to the point that it has overpowered my vanity. Also, yes, that is, in fact, a stuffed camel on the bed behind me.

Now. For other things. If you have a song for me to learn on the ukulele I would love to try it. I’ve had my uke for 2 months and 1 week. Her name is Kaipo (means “darling” in Hawaiian) and I love her but obviously I’m new and I’m not great but I can actually play a lot better when I’m not video taping myself so I gotta work on that.

I love love love my ukulele. It was my $99 Christmas present to myself and I have played almost every day. It’s very comforting and also uses a different part of my brain that has been lying dormant since I played an instrument or drums in various bands and ensembles in college/law school. I love music 🎶

Ok – that is all. Have a super Sunday.

Lymphoma Diaries: Chemo Friday #1

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Brentuximab (aka Adcetris, clinical trial name SGN35) – that’s the name of the monoclonal antibody infusion immunotherapy drug that I’ve been prescribed. We call it chemo – but the definition of “chemotherapy” has changed drastically over the years. According to my Chemo Education video (viewed by Momma and me…), in simplest terms, chemotherapy is the use of chemicals to control the spread and potentially eradicate (KILL KILL KILL!) cancer cells.

So. Thursday I spent an hour and a half learning about chemo and potential side effects and signing consent forms and then I learned the best news – the doctors pay for Duffy’s Deli to cater lunch for patients. Whoop whoop. Chicken salad!!!

I wasn’t nervous – just ready to get on with it. As luck would have it Friday at the office was total insanity. People came out of the woodwork but I got two new cases (though I did not complete my to-do list … spoiler – I rarely complete my to-do list on any given day!!! So much to do!)… Then, as usual, I had the worst luck at picking an efficient drive through line at the bank on the way to the cancer center which is less than a mile from my office (and the bank is on my block).

I finally got there right at 1 in time for the appointment. They had to order the drugs from the pharmacy and do a bunch of checking things, blood pressure (that machine thing never works on me so she had to use the cuff) and I got my chicken salad sandwich. I know it was Friday and it is Lent but I didn’t really have any other choices and I HAD to eat before the drug was given so I decided to abstain a different day this week from meat instead.

I sat in chair 1. It was freezing. I had a pillow. I have squirrelly little veins so they called another needle expert nurse over to find and insert the iv. It kind of hurt and I get poked ALL the TIME. Will came with me. There was a tv on the history channel but I mostly just giggled with will. It burned periodically going in but for the most part it was very easy.

Then they flushed the line with some regular fluids and sent me on my way. I stopped at Publix for groceries and snacks on the way home to my clean house and the kids had gone to their daddy’s house.

So – I lay down and took a nap. For 2 hours! I had a terrible headache but I had a headache before they started it so I’m thinking it may have been a migraine because I still have it now almost 30+ hours later.

I threw up in the night once. Again, can’t necessarily blame that on the treatment because sometimes a migraine will make me sick. But today I’ve been nauseated and I also have some stomach pains and problems. I’ve watched movies and napped. I ate somewhat normally.

All together I’m good! We will see how the rest of the week goes. 🙂

And here is me with my portrait at the cancer center. :). Again.

Lymphoma Diaries: Princesses & Chemo

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Lymphoma Diaries: Princesses & Chemo

I returned Monday night from Disney World. It was a hard crash into reality. My husband had managed the children while I was off princessing but was preparing to go out of town and found out Monday morning on the way to school that the SuperTweens had a band concert MONDAY NIGHT. This led to drama and texts and how will they get there and are their uniforms clean and Will has a meeting and has to pick up his rental car and so on and so forth.

Not gonna lie. It was like the straw that broke the camels back on my vacation end hangover and exhaustion from 4 days of running and riding rides and Disney-ing in general. Luckily, a MawMaw (not our MawMaw but we call her that because she belongs to our friend Reese) and a Grandmomma (who does belong to us) to the rescue. MawMaw took them and Grandmomma came and everything was fine. I got home about 8 and giggled with the children over our Disney photos. Here’s a small sampling. Disney is a whole other post.

The 10k on Saturday

The Half Marathon on Sunday

Rides & Characters:

And friends, the best of friends…

Ok. So there’s all that – oh and one more thing – all that bling:

Now – on Friday at 5, my oncologist called to tell me my PET CT scan looked good (as in nothing really that we didn’t expect) and she was putting in for the office to schedule my chemo education class.

So, tomorrow (Thursday, March 1) I get my treatment plan and I’ll have my first chemo infusion on Friday at 1pm. I’ll have infusions every 3 weeks. The funny thing about this is that the day Will and I got the verdict about treatment for the first round of Lymphoma was February 29, 2012 (Leap Day) so 6 years TO THE DAY – I’m starting treatment on round 2. So crazy.

In other news I had a super exhausting but satisfying day in court. I had a long hard fought trial. I mean, the trial itself wasn’t long, just the day – but it’s been a long time coming and it was well-tried by the State and I felt like I also did my job and it resulted in an excellent result for my client. Days like that are exhausting but satisfying. I do love my job, even when I hate it.

So that there’s the news in JJ World. I miss Disney World. I’m having withdrawals but we hung the medals on my medal hanger at the office today so the memories will last forever, and I was really glad to get home to my family and puppies. ♥️

Lymphoma Diaries: The No Good Day, a Pet Scan, and Walt Disney World

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Monday was President’s Day. I did not take the day off as I had a LOT of work to do, appointments all day, and court. Oddly, I could NOT for the life of me go to sleep on Sunday night. We’re not talking I laid there for an hour or two or that I woke up at 2am unable to sleep. I was up. All. Night. Long. Like college all-nighter (but back then I would turn the paper in and go back to bed. Needless to say Monday was rough and then at 4pm I had to turn around and drive to Alabama to pick up the super twins from their Daddy.

All things told, I held it together. Until Tuesday. I woke up grumpy – but I kept it on a somewhat even keel. And then tears leaked. Juvenile court was awful. I was tired. I was hormonal. And also? I HAVE EFFING CANCER AND I DON’T WANT IT!!!

I quit juvenile court. Like told everyone there I would take no more cases. (This was a rash decision, but I am having to draw some hard and fast lines about limiting my case and, well – there’s one category down!)

I (accidentally) fussed at my Momma on the phone when she called and I got a little heart (granted she told me not to “do this anymore, I can’t handle it any longer” and I haven’t done it AT ALL, so that struck me wrong…but my mommy is the sweetest so I called her back and told her I was sorry.)

What is my point here? I had a bad day. And I was so mad. At everything. Irritated and just full of blah. And most of all? I was mad at myself because I couldn’t figure out the problem. Nothing was different. Why did I feel so emotional. (Answer 1: hello hormones. Answer 2: I was SO tired from previously mentioned all-nighter. Answer 3: I have cancer and I’m entitled to a rough mental day after 5+ weeks.) I let my parents help me and we went to see RENT. It was great.

And Wednesday I kicked arse again. Court and meetings and I finished something from my to-do list I’ve been waiting to do for months and months. Yay.

Now. At 10:45 I’m having a PET CT scan. (Click here to read what that means.) I’ll have radioactive glucose dye injected into me for like an hour and then a big fancy scan. And then I’m going to run to the office, sign a bunch of paperwork and get my fancy ukulele case (see photo)

And then I’m going to head South because – IT’S DISNEY DAY, PEOPLE, this is not a drill. My tiara and my Mickey ears are packed.

I think this is my 4th annual trip for Princess Half Marathon weekend.

As luck would have it, I go to Disney 3, 4, sometimes 5 times a year. It’s February and I just got back January 8 from running the WDW 5k and 25th anniversary MARATHON!

I went in November as well with my kids and Willie…

We ran the Wine & Dine Races – kids ran the 5k – I did 5k, 10k & Half. It was fun.

Before that we went in May and February. So. This is my 5th trip in 12 months. Eek. I guess I have used my annual pass to it’s full potential.

I have a magic band problem and I have twice this many now!)

Facebook also told me today is the 4 year anniversary of my kids’ first 5k – the Run With the Wolves – I love them. And dang if they don’t grow fast.

Did you know I started running almost exactly 4 years ago? Because of cancer. And look where I am now!

Alright, so all that said – I’m having a PET scan after I finish my Disney packing today. The rest of the week/weekend will be dedicated to having a hurrah and not worrying about anything other than getting up at 3am to run crazy races in the Happiest Place on Earth.

This is a long post. and it’s all over the place. But – I felt it was important to recognize the bad day, give it its due and move on. ♥️ Plus, it’s National Margarita Day! Viva la Margarita!

Lymphoma Diaries: Partial plan

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Lymphoma Diaries: Partial plan

I had the “first” oncology appointment Friday (2/16/18) with Missy Dillmon @ Harbin Cancer Center. It was not my first appointment with her because I’ve been seeing her for exactly 6 years and 2 weeks. My last visit to her office was in December for a routine well-check from my prior bout with ALCL (anaplastic large cell lymphoma) in 2012.

Here are me and my biggest fan in front of my “Faces of Hope” Portrait at the Cancer Center. This time we will “finish the drill” yet again. And I’ll still be a survivor.

It was, however my first appointment since the pathology report/biopsy coming back positive. So this is what I have learned (or remembered):

1) Cancer still sucks eggs.

2) what I have (I think I remember right) is “relapsed refractory” ALCL.

3) my treatment was radiation only last time because the tumor was localized in one place and it was highly successful – but…

4) this time, because it’s relapsed and because I have “multifocal” primary cutaneous involvement and the potential of systemic disease with B symptoms, we are planning on an immunotherapy (type of chemo that is specifically target to my type of cancer cells – they express CD30 (which I think is a protein maybe?)

5) the specific drug is called Adcetris (brentuximab vedotin) – this is the specific info from ChemoCare.com my doctor gave me. Feel free to read it or not read it. I’ve read it. #obviously

6) I have to have a PET CT scan (I knew this without having to be told – it’s the standard – to see what systemic involvement is observable and to rule out any organ involvement or tumors…) PET scans are amazing but they take a long time and it takes forever to get in to get one. They scheduled mine for Friday (2/23/2018) but bwahahahah – I am going to be in Disney World with my Best Running Friend (Molly!) Starting Thursday night and in fact, to be more specific we will be at Hollywood Studios Friday morning, and then picking up our race bibs for the Disney Fairy Tale Challenge where we will be running the Enchanted 10k on Saturday and the Princess Half Marathon on Sunday. (2/24 & 2/25). So, we are hoping for a cancellation one day Monday – Thursday so I can get it done before we leave but you know, no big deal, I’ll still have cancer when I get back. AND DISNEY!

WAY OFF TOPIC BUT PLEASING DIVERSION! I leave for my happy place in 3.5 days. Molly and I go to Disney to run the races Thursday – see the medals and silly photos from last year’s race here:

And silly photos from last year’s races with Molly:

Ok so where was I? Cancer. Right.

So – basically this Adcetris thing is once every 3 weeks via infusion. It only takes 30 minutes up to an hour. Could cause nausea, headaches, etc – like every other chemo – but hair loss is only common in 20-30% of patients which is a major plus. 16 cycles = 48 weeks. So we are likely looking at this time next year before I finish. But, you know, you gotta do what you gotta do.

I’m ready to get the show on the road. I have worries. I haven’t been upset about any of this and I’m still not but, as many of you who know me personally will be aware, I’m a big fan of knowledge and power and control and I feel like I have some knowledge, limited power, and NO Control currently.

I’m in the middle of a search for a new assistant because my limited time with the most amazing paralegal ever is ending. Tracy was a gift to me (and still is) and I knew my time with her was limited – so I gotta find someone else. I think I have made my decision but it is still nerve-wracking. An assistant is like choosing a partner. It IS choosing a partner. And with all this other madness happening, it feels extra important.

Speaking of work – I don’t know how to manage or anticipate what will happen during treatment. I’m not likely to be physically at the top of my game (though you can believe I’ll still be exercising and eating as well as possible) – I expect fatigue and some physical discomfort that is likely to affect my ability to continue working 50+ hours a week running my own solo law practice. But what do I do? Do I limit the intake of cases (we are super busy right now! Yay for business!) and I’ve decided not to take anything out of Floyd County and to try to limit the more stressful time consuming new cases (custody battles, mostly) and I had intended to work on my mediation certification, but it’s quite the outlay of cash (plus I’m hiring a new full time assistant, did I mention?)

By the way, I know it’s been up a while but have you seen this awesome billboard on Broad Street???? (Hey – shameless plug – but look, I kinda deserve it now, no?)

Anyway – note I am not worried about dying or feeling bad, I am worried about how it will affect my normal life…not just work but my normal “all in” involvement with my kids’ activities – show choir, band, etc.

so that’s the main update for now. It’s Lent and we are fasting and being prayerful. I’m over the moon that Will is going to be baptized and also have his first holy communion and be confirmed at the Easter Vigil service at Saint Mary’s. We will be going to the beach the week leading up to that (Spring Break and I didn’t know I had cancer when I booked that but now I’m SO glad I did!). We will be back on Good Friday for the rest of the Holy Week services.

Thank you all, again, from the bottom of my big ol’ heart for all your well wishes. Please know, AGAIN, I AM ok. I am feeling ok, I am doing ok, and I will be ok. I love the hugs and the prayers and thoughts. But please know if you see me at the Walmart, I’m still me. Me with cancer, yeah, but I’m ok! Please just talk to me about whatever you’d normally talk to me about. Don’t make a pity face, just smile and hug me and ask all the normal questions – run any races lately? How is show choir going? Wanna have a beer soon?