Lymphoma Diaries: the stool sample

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Lymphoma Diaries: the stool sample

Right. So if you’re here to read about all happy sunshiney “Cancer has been a blessing” stories, just keep going. Thus far, I have made posts with a pretty healthy dose of humor and irreverence (this one won’t be much different) but I think it is important to be real. Transparent. I have had a lot of encouragement from you, dear readers, saying that you have appreciated me sharing my story the only way I know how – real & honest.

My good attitude has not been a farce. It is not an act. It is really real. Forever it was very unreal to me that this was happening…again… and I’ve already beat it before so I have a winning record. As such, it’s easy for me to kind of pretend like it’s not happening… UNTIL –

Until I start losing my hair and have it all cut off. Until I have to make all my plans for every day in a way such that I am not more than a few steps from an available toilet. Until I don’t sleep for the random shooting pains in my arms and legs. Until my feet are so swollen I have to wear my Teva flip flops to the law office I own and run.

Now it’s real. It’s ugly. And it’s only fair I share that part, too. So last post my hair was falling out at the beach. Well, we got back Thursday night to a very clean house because my fabulous Carolyn came that day, and puppies at home because kind neighbors kept them here so we didn’t have to pay out the nose for boarding. My hair stylist, the fabulous Kristi McEver (whom I’ve been seeing since 2011), worked me in on Friday morning for a cute short ‘do. I had *just enough* to donate to CWHL (Children with Hair Loss) when I got it cut..) here is a photo montage of all that and my sassy cut.

After that adventure we went to see Nannie. I played Baptist Hymn #470 (Because He Lives) for her for Easter and then played and sang some more and Mrs Rogers (Nan’s roommate) sang, too! I got cornered a little by the activity director begging me to come back and play for the residents. I’ve only been playing 3 months so I don’t have a whole set! Ha.

But I did play Brown Eyed Girl in the cafeteria before we left.

Then on Saturday we did fun things and my momma made us lunch and my Grandmomma made me delicious strawberry cake – well white cake with strawberries. It was to die for.

My baby seester Casey is the family photographer and I swear she sent me photos but the only one I can find is this, which sums up the day pretty good (that’s my cool bro in law, Brady…)

Then Saturday night Will was baptized at the Easter Vigil. He also had his first communion and his confirmation. It was amazing. I wasn’t feeling great but it was an amazing time. Here he is with out Priest, Father Rafa:

I also remembered that I needed to be the Easter Bunny (in reality I never told my kids about an Easter bunny but I do make them baskets…)

And here are some older Easter photos of my adorable peeps. (See what I did there? 😂)

Anyway, I got up and had to be a lector at 9:30 mass on Sunday and then when I left, knowing I was exhausted I was going to get Publix subs but duh – it was Easter and they were closed so I went through Steak ‘n Shake. Instead of the BLT or grilled chicken sandwich I was going to get, I made a poor choice of the mushroom Swiss burger. Well before I had finished eating it I was having a bathroom emergency. Ugh.

Everything went downhill from there. I never got over that burger and blamed myself. On Monday evening I sent a message to my chemo care team and was asked to provide a stool sample which I did on Tuesday. Today I learned I have something called C. Diff. It’s basically a cousin to E. coli. Bad gut-eating bacteria. I feel terrible but I started the medicine for it 2.5 days ago so I’m praying. I knew it wasn’t just chemo. My hands and feet are super swollen. I can’t wear my wedding rings even. Not even the skinny band part.

I did get to take a photo with myself as per my usual visit to the cancer center to return my stool sample.

I’m also experiencing the expected peripheral neuropathy mostly in my tingly numb hands. I talked to the NP tonight. She wasn’t able to offer much help. Just that I have to suffer through the pain of the C Diff. I see my oncologist next Thursday and will hopefully have my 3rd cycle of Brentximab Friday the 13th (ooooohhhhh)

All I can say is I’m glad tomorrow is Friday. It has not been on of my better cancer weeks for sure. But brighter days are ahead. And I have learned a new song on the ukulele for you all but it will have to wait to be recorded.

Alright. That’s about all I got in me today. Much love. Shiny happy people hugs to everyone.

Lymphoma Diaries: the one where we leave the beach

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I don’t want to leave the beach. I have, admittedly, not felt my very bestest with some persistent and intermittent fever days and being a little tired. Plus there’s that whole hair loss thing. So. Much. Hair.

But yesterday was a perfect beach day. We went for a walk at 8:30 or something and then we saw them lowering the double red tide flags and putting up the regular single flag – which meant major caution but the water was open again. So we came back to the condo, made egg salad, packed up our little cooler and hit the beach. Will had to do some other stuff but he met us there later. It was really crowded but the weather was amazing. Cloudy with periods of sun. The kids happily played in the water for hours (reapplying sunscreen of course) and then we ate lunch and watched little kids play in the surf.

here are some other photos just from my phone. my hair is coming out in handfuls. So carson and I experimented with head wraps last night. They look way cuter on her.

I have a hair cut in the morning at 9. I ordered two hats – a springy beige one and a black newsboy type. I don’t know what to do when I have to go to court. The very absolute worst thing about the thought of complete hair loss (and that seems where it is headed) is that my situation will be so obvious on sight to everyone. Obviously it’s not a secret or I wouldn’t be posting all of this every other day – but it’s gonna make me *look* sick. I’m a lot of things and I feel crummy but I refuse to BE SICK.

Anyway, my Carol is here (she’s at my momma’s right now) but I’ll get to see her and then the rest of the family is going to be around on Saturday for lunch at my mom’s and an Easter egg hunt for the little cousins and C&C are helping them. Then Saturday night we have the Easter Vigil and Sunday morning we have Easter and I’m reading at church at 9:30.

Checkout time is at 10. That’s in 5 hours. We gotta pack and get home to the doggies. 🙂

Lymphoma Diaries (and Mondays are also for Singing)

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So we got to the beach late Friday evening. I crashed out. Between starting to shed my hair on Friday, chemo treatment, court, running to the office to make sure everything was in order for vacation and then packing all of us up to leave… by the time we were stuck in traffic in Birmingham, I was DONE.

Anyway, Saturday morning I woke up at 6 and we had our special Ethiopian brew coffee from Swift & Finch, we sat out on the balcony and watched the sun come up.

Around 9:30 we all went to Publix to pick up a few groceries. We got back and the children made themselves sandwiches and one for me, too and we packed our cooler with water and drinks and our little lunches and headed to the beach around 10:30 or 11. Will wanted to run out and get some cigars so he met us down there later. The water here at Gulf Shores is cold cold cold (not that the children were deterrEd!) but the actual beach was pleasant and I propped up with my book and tried to breathe in the salt air and relax. Apparently I did because while I was mildly aware of the children opening the cooler to eat their lunch I fell asleep in my beach chair for about 45 minutes. I had on a lot of sunscreen and a hat and polarized sunglasses so I only had a few pink spots but the kids, despite reapplying our 50 sport high rated sunscreen multiple times got a little burnt but the next day it was better. They had fun on their boogie boards in the surf.

I have the Sea in my soul – I was born to be at the beach. I could stay out allllll day as long as I had provisions. Will came down around 1 and stayed about an hour. Then we went to the pool for a little while around 2:30 and hung out for a while until we came upstairs and I took a shower where more hair came out. Ack. Here is some of the hair I lost in the first 24 hours:

I lay down for a minute before we made chicken fajitas and had a nice supper at 6ish. I did start knitting a hat now that I’m losing my hair. Boo. And then we all conked out and slept all night.

Yesterday we got up and (after coffee) went to 10:30 Palm Sunday service at Our Lady of the Gulf, which was beautiful. Different than Saint Mary’s in Rome but very satisfying nonetheless.

And then a little selfie for me and my love:

After church we were starving and, as luck would have it (I already saw it on the map last week), one of our favorite restaurants is across the street from the church – Tacky Jack’s! I had a grouper sandwich and Carsie had a chicken taco salad. Cole had a shrimp Po’ Boy and Willie had snow crab with corn & potatoes. I also had a Poinsettia – which is like a mimosa but has cranberry juice instead of OJ.

Then we came back and despite my intention to return to the beach I fell asleep. I woke up and felt awful a couple hours later. Fever. 101.5! No one was in the condo. I called Will on the phone. They were at the pool/beach. He came up to check on me. I took Tylenol and ibuprofen a few hours apart and it finally came down.

I ended up going down to the pool later in the afternoon. It was cool bc the pool was in the shade (kids didn’t care) and then we came up and Will made us turkey sloppy joes and sweet potato fries.

Today I have another over 100 fever. It’s cold windy and a red flag day so we are all a little condo bound. I do have a song for Easter week though. I look ridiculous because I have a fever, no makeup, and my hair is falling out. But the song is about hope – and that is what Easter is about. I meant to record it and post yesterday but the day got away. I’m tired of being sick. I know it all just started but I’m impatient with all of this. So – since Sundays are for Singing (or Mondays if you have a fever and are on vacation) – I’ll leave you a with a song. I can and have done better but I had a kid recording me so it was one take or no take! Lol

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.