This photo made me cry this morning.
I have dozens of these selfies with myself (portrait by Kelly Moore courtesy Faces of Hope project).
But this one is one that was taken just about 6-7 weeks before the lymphoma was found. Again. So everything was fine at my December appointment last year. And then by mid-January I was having surgery to remove a lymphnode and biopsies and making a chemo schedule.
Cancer never goes away. Once you are “cured” (in remission), you never let go of that fear that it will come back.
I won’t say this has been a crap year. I will say this has likely been the most challenging year of my life – and it’s not over. I’m having my 6th surgery in the last year on Friday. It’s a revision surgery of the radical skin excision I had last spring and it’s outpatient and I’M FINE, I promise but my body struggles to heal from all the immune issues. I have to see a neurologist and a eye specialist and just had a ton of tests for other autoimmune issues.
It’s totally not nice when your body betrays you. But I am determined to be kind to myself (and others!) and to spend this Advent season which begins this weekend focusing on preparing my heart for receiving the peace that surpasses understanding.
I love you all and I appreciate your comments on how “well I handle everything” and being “in inspiration” and having such “an amazing attitude.” However, I want you to know – although I have generally had a good attitude (I get it from my momma) during this fight for my life and my family – I am human person and I struggle. It’s been hella hard. It still is. And it will be – at least for a good while yet. Because cancer never leaves you. Not really.
You know in the show Stranger Things where there is The Upside-Down? Well, with Cancer, there is an In-Between and I’m smack in it right now.
First, I apologize for my hiatus. I could say I was just fabulously busy – or that no news is good news – or that there wasn’t much to tell – but none of that is true.
The truth? The one I don’t want to admit? I was SICK. Sick like a person who has cancer or something. (Duh, right?) I started with chemo March 2. It seemed like an adventure. A task to tackle. The first, the second, the third stick of the IV with poison in my veins. I was ok. I went to work almost every day and I even survived the C. Diff working half way from home with a half smile.
I even got a wig.
But something happened in mid-late May/early June. I got sick. I remember the day. It was a night, actually. A Wednesday. We were in Disney. Sure, I’d been tired and had minor side effects. But we had the most lovely day in Epcot with early lunch in Japan –
and then, in the heat, waiting for the bus, I started to feel “off” – I got back to the hotel, slept for an hour, and woke up and vomited like I had food poisoning. And then it was over. I didn’t have food poisoning. But I mourned the loss of enjoyment of dinner at my favorite restaurant, Ohana (means family and family means no one gets left behind!) – though our waiter was lovely and let me pack it all to go and I ate potstickers out of the fridge later.
Anyway, the day after that I fell in the Magic Kingdom. I couldn’t feel my feet and I was in front of Country Bear Jamboree and darn if the concrete didn’t just jump up and lay me down. I was ok. I didn’t cry for 7 minutes until we were in the show in the dark. My almost-14-year old son grabbed my hand and said the kindest thing: “It’s ok, Mom. You’re ok. Everything is going to be ok.” I am teary remembering it. Anyway, that night I started to get shooting pains in my arms. I moaned all night. I cried. I called my husband. This was decidedly not like Me.
Then I never quite recovered – I came home to a new paralegal, Kayla (who I am loving) but was mourning the loss of my Tracy (whom I still love), and I just felt… not like me. I was tired. Nothing sounded fun. Even normal errands (dry cleaner, bank, groceries) were just.too.much. The neuropathy in my hands was awful and in my feet was pretty bad. I had to take nerve medication and pain medication and it was just all awful. And then I had my next-to-last *planned* treatment on June 1. After that I went back and my oncologist excused me from my last treatment on the 22nd! Hallelujah.
It was because I was sick. I felt so bad. Y’all. I’ve been sick with pneumonia and bronchitis and all kinds of things. I knew I would (I know I will) recover but I could see no light. I was so down and so frustrated at my lack of any ability to be a parent, to participate in my household, to perform my vocation on any level. I could not see a light – only a tunnel.
I’m done with treatment. I don’t have an appointment for 2 more weeks. Nothing has happened except scruffy hair growing back but I look like a fledgling. Srsly. Not pretty. I’m in this weird adolescence of healing where everything is awkward.
Ugh. This is real. No makeup, no hat, no wig.
And then we had a terrible trip to the beach. No really, like how do you EVEN have a not-great time at THE BEACH? Well, we came home a day early. I did see some folks being baptized in the ocean, though.
But then today happened. I laid out my adorable outfit last night, earrings and all. I made the coffee at 6:30. I took Cole to band camp and sported my silver wig to two court appearances, and I stayed at the office past 1:30pm. I stayed from 8:10am until 4:45pm. And I lived to tell the tale. And I’m ok. For the first time since May. I can see my Upside-Down turning the right way up. Thank GOODNESS. I couldn’t hardly stand myself.
And I can only share all this raw ugliness (partly anyway) because I’m coming through it now. This is real. This is cancer. This is ME effing cancer up, y’all. I am always the winner. I do not give up. I will not be beaten. I will get out of the in-between!
I’ve been missing but it’s been hard.
I had the C Diff. Then I got peripheral neuropathy. It’s the pits. My hands and feet hurt. I had my 5th treatment Friday. This week has been fallout from That and I haven’t felt well.
I dress myself up. I put on false eyelashes (sorry to my friend Rhonda!) and makeup and a cute scarf or hat and I “don’t look sick.” This is according to my friends and family. Good. That was the goal. But. I am sick. I really am. Cancer looks like this on me:
But a lot of the times it is really this:
This is a quilt that my most neatest friend and roommate ever, Melissa, made for me. It has squirrels on it not because I’m ADD (I am) but because that is our sorority mascot and A LOT of my friends from college sent her fabric to make it. There’s one there with a ladybug on it – that’s from one of my XO (Chi Omega) friends. ♥️ And the sunshine day quote in the middle is from my big sis, Carmen Sunshine. Another Carmen sent her J.Crew going out skirt from college. So totally her. Thank you all if you are reading this and you helped. It is the most favorite gift I’ve ever received and so comforting.
So – I have a clean house today thanks to Carolyn. My kids are at separate parties. I booked not one, not even two but THREE separate Disney trips today. July, September and November!!!! So there is always a bright side.
I still have my mostly sunny attitude. But I’m smack in the middle here and I can’t remember not having cancer. Which means I can’t really see the end of the tunnel and that mythical light that lies there.
I have one cycle of treatment left. Lo and behold my hairs are growing back! Mostly grey, which is kind of fun.
Ok folks. I’m out for the night but this long overdue update brought to you by a Coca Cola and a Friday night. ♥️
I should be sleeping – but my sleep schedule has been whackadoodle since the C Diff reared it’s head. I slept all day Sunday and Monday, went to the GI Tuesday, slept half the day Wednesday, and took a 3 hour nap today.
I have to get up at 5 to go on a spring weekend trip to Cincinnati with the Cs. I’m taking my pillow and headphones and eyemask. Wish me luck!
In the hush of watching HP&TDHpt1, I started thinking of things I’ve learned since this second diagnosis of Anaplastic Large Cell Lymphoma.
– expect nothing, and everything. I was told I probably wouldn’t lose my hair. Whoops. I thought I’d have more symptoms from chemo. I have a little neuropathy in my hands and feet. But otherwise, besides fatigue, I think I tolerate it well…
– head scarves are fun but my head is hot all the time. Hats are easier. But looking good is really important to me. I feel much better when I look good.
– even if you lose your hair there is a period of stubble patches that require a razor – and nicks on your tender head aren’t fun.
– I don’t do well with a lot of pity – the one thing I can’t handle is being pitiful. Thank you all for not piling me with pity. I appreciate your acquiescing to my facetious humor about the whole situation.
– slowing down is hard. I have two speeds: pedal to the metal and asleep. I’m working on this. God is showing me. (But I’m telling you I can’t Netflix much more.)
– Food is my favorite thing to get as a gift – just FYI. You know, in case you were wondering – I have not eaten much but having food for my family has been a blessing. Despite surgeries and cancer the first time I have never had a meal train or anything and I’ve not gotten a ton of food other than from my Grandmomma so… when you have a friend who is struggling. Food. Even a dozen bagels is an amazing gift. Or a gift card to Moe’s.
– attitude is everything. Attitude and lipstick can change the trajectory of your day. No lie.
– my kids are my best gifts. They are so different but both my favorites. They’re such self-sufficient little buggers. They keep me centered and laughing. I’ve tried to keep things normal for them but they are actually keeping things normal for me. … I realized while braiding Carsie’s hair tonight is that I love braiding her hair. I love getting stains out of her favorite dress for a special beta club induction. I love helping Cole search the house for his blue sleeping bag (not the green one) before his Scout campout. I love the normal stuff of being a mom. MOMS – be very careful when you complain about the laundry or the grocery shopping or taxiing children all over town. I have been too sick or too tired to do a lot of that for the last month or more and darn If it isn’t killing me. I pine for a meal plan and a grocery shop without passing out.
…now, I have help and I’m grateful but I love being the all-knowing schedule keeper, the finder of all lost things, the silly embarrassing mom who sings Party in the USA with all the moves at the red light. That’s how I want my kids to remember me. That I was grateful for their company, that I let them be themselves while still helping them on a path to success and that above all things, that I loved them with all I have and never stopped hugging them, saying “I love you”, and tucking them in at night.
– even when you are 40, you want your mommy when you are sick. I call her at least 2 (sometimes 5) times a day. For no good reason. And she always answers. Call your Momma. One day she will be the one that needs you. Same with your Grandmomma. Mine sends me sweet messages every day and it is such a relief that my family loves me. So much. Even my baby sister calls to check me.
And. My husband. My Willie. It’s our Lucky 7 of being married and 10 years of being together. There aren’t enough words and I’ve been a cranky pants because of all the medicine and pain and sickness but I tell him every day how grateful my heart is that he LOVES me and he LOVES the children. He LOVES our family and is an amazing example of how to be there. Just – be there. He comes to all the kids stuff No matter how mundane or unimportant it may seem, being there is the most important thing. And – he’s there for me. Every doctor appointment, every middle of the night “emergency” no matter what he lives like he is the luckiest guy to get to bring me Gatorade, watch me get stuck up With needles and drive me when I’m nauseous. I can’t imagine that I could be the not only patient but willing servant that he is to me.
So. That’s my ramble for 1am. I have to get up in 4 hours to go on a Show Choir trip to cincinnati (which is more pedal to the metal – but YOLO and this is probably the only “spring trip” my kids will get to go on together. I’m determined to enjoy them.
People, if you learn one thing from me (besides how to look cute in head scarves and that lipstick can change your life), let it be that every day, every mundane “chore” is a gift. It is memories with your family, your friends, yourself. Because at the end of the day, we will all be gone from this Earth one day. And when I am – I want my kids to remember my super loud laugh, that I only said “No” when there was a good reason, that no matter how ridiculous or annoying or loud I was, I was THE Mom and they wouldn’t trade it for anything.
I haven’t posted much other than 8th grade formal photos. I definitely have not talked a lot about The Cancer lately. I haven’t blogged it. It’s not that I haven’t thought about it. I want to share.
The long and short of it is I have been very very sick the last 5 weeks and I have lost my hair and 22 pounds. It’s not a secret that I’m sick, but that’s not a fun thing to talk about. I know deep down that part of the philosophy in my having been so open about all of this cancer $&!+ is to share not only the positivity but my low moments, too. It doesn’t make me a weak person, I know. But I’m here to tell you I have felt more physically weak than ever before in my life. It’s also done a number on my anxiety.
I still have C. diff. (clostridium difficile). It’s been 5 weeks since onset. If you know what it is, you will understand the extent of my misery – if you don’t, I pray you never ever do. (Though google is available at your disposal…) I can handle cancer. Twice, even. I have managed chemo and all the crummy stuff. But C Diff has pushed my limits of holding it together. I can’t keep my regular work (way too much) schedule. I can’t do all the kid driving and volunteering. I can’t really say yes to almost anything because I just don’t know whether I’ll feel well enough.
Today Will and I saw the GI specialist and I’m on another round of Flagyl AND another tougher antibiotic called Vancomycin which my insurance (which is usually great won’t cover a dime. So we spent $200+ at the pharmacy today. On top of two copays for the GI and for the infusion clinic where he sent me to get a liter of IV fluids. Here’s what that looked like in the infusion clinic:
It’s been a rough day. Week. Month.
Silver lining: my pants are all loose.
So here is a random smattering of happy photos from Cole & his crew @ the Rome Middle 8th grade formal, Will and I at the Foo Fighters Concert and whatever else.
Also – 17 days until Disney! Wilderness Lodge for a week. Ahh.
Here are some of my head scarf and bald looks:
That’s all I got. Just hanging on. I gotta get better. For my kids. For Willie. For me.
So I have spent the last 8 days taking a giant antibiotic pill called Flagyl, which is used to treat Clostrium Difficile, or C. Diff. – it’s a bacterial infection that occurs in your intestines if you’ve been on antibiotics or if your immune system is otherwise compromised. Well, before I was diagnosed I had two surgeries over the summer, after which I was on antibiotics, and after one of which I got an infection and had more antibiotics and then in the fall I had a double bout of bronchitis, with antibiotics and steroids, then pneumonia – with more than of the same. Frankly, I hate antibiotics but ever since then I’ve felt a little off in the gut area (especially since I don’t have a gallbladder anymore…)
I contracted the flu in mid January and all this lymphoma mess came up at the end of the month.
And now I have C Diff. I really started feeling off in the tummy at the beach after my last round of Brentuximab (chemo infusion), but the persistence led me to call the doctor and get this diagnosis. Today I have turned the corner and while I still feel crummy I feel a LOT better than the last week. I’ve lost 8 pounds in a week. Not great when you can’t eat any food.
It’s the 3rd week of my 3 week chemo cycle. The 3rd week is when my hair stArted falling out after the first infusion, and now it’s coming out in handfuls again, albeit shorter strAnds. I have resigned myself to becoming a person with no hair…eventually. It’s the waiting through this thinning hair thing that is killing me. Either fall out, or don’t. Argh. I do have a few cute hats – so those will come in handy and I’m not sure about the headwrap thing but you know – we will see if it will speed up again in the next few days. If it comes out in chunks I’m calling the hairdresser with the clippers.
Here’s the last two showers’ worth of hair. I mean? It’s kind of morbid to see it like this but when you are shampooing and run your hands through and come out with a handful… what else to do but put it on the wall. Kinda like art? Maybe?
I’ve stayed home this week. It’s been hard. I run a law practice which is not much of a law practice without the actual lawyer. I love my job. There are crap days and I hate some of the tasks but on the whole, I adore my vocation, helping my clients… all of it.
In other life news: My next infusion is Friday and my friend Jeanne is coming with me. She is a doll and just a joy to be around so that’s exciting. Carson got new glasses this week after an eye exam – they are super cute.
Cole is going on a Scout campout this weekend. We have no other plans. Thank goodness. Laundry. Relaxing.
I don’t have a lot of other news. I’ve spent the last week laying around trying to kill this bacteria. Updates after next chemo!
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.
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. 🙂
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