Good news or bad news first?
Ok, we'll go with that one.
I haven't stopped moving since school and after-school activities started. We've launched into that place where the days are measured by how dark it will be when they wake up and if it's too light to go to bed.
I always loved the first days of school when I was a little. The Trapper Keepers were painstakingly chosen (will the cover be Michael J. Fox? Cyndi Lauper? Unicorns?). The binder filled with college-ruled paper (even though we all needed the wide-ruled to accommodate those loopy q's and the i's dotted with hearts). The pencil case full of no. 2's and a bonus Trolls hair pencil topper.
As a Mom, my favorite parts of back-to-school are the reading lists and the common core math. I'm ignoring your moaning at that last bit. Moving on.
More than watching my girls spar, twirl, swing, tap and paint, I love watching them read.
I grew up in the Judy Blume and CS Lewis school of life and fantasy. Margaret taught me that everything changes (Thank God). Peter, Susan, Edmund and Lucy helped me have faith in something bigger than all of us. Back in the days when Pluto was still a planet (before it wasn't and then was again) Meg Murray taught me that you can use love to move through time more easily. Even the big-eared BFG had great lessons--the one that stands out the most of course is that it's fun to whizzpop and we all need to do it a bit more publicly IMHO. It's whoopsy whiffling.
But all my love goes to Milo, his tollbooth and his Watchdog, Tock. Tock reminds us that "once there was no time at all and people found that very inconvenient. They never knew wether they were eating lunch or dinner, and they were always missing trains." But once time was discovered, it was quickly misbegotten and abused, employing Tock to weed out time wasters.
I have a Watchdog, too. It's MS. MS reminds me all the time of all the time I could lose.
As a Mom, I insist that when my girls are ill, they lie down and rest. Sleep. Heal. That's what you do. As an MSer, I fight the need to lie down when I'm ill. In my [very specific] case, sleeping and rest don't necessarily heal. I'm not losing days to this shitty (sorry, Mom) disease. I don't get time back. MS is my Tock and this bitch reminds me to be most wise with it.
This is not for everyone. I want to make sure you understand that I don't condone going to work with the flu or heading to the gym with a broken leg. That's not what I mean.
This approach was written and illustrated by me, for me, and was heavily edited. I am aware it's a bit radical. I am also aware that this isn't a doctor-recommended (or husband-approved) approach always.
I'm especially aware this week because I'm on the downward slope of the rollercoaster (that's the bad news you asked for second). I'm feeling old symptoms and it's been tough to keep my chin up. It's been a hard to power through. Hell, it's been hard to walk. But it's easy to look at my family and remember that HSCT has made sure I get more time to hike, go to karate, have a dance party and read books with them.
So now I can put a bookmark in it and go to sleep because it's dark outside and the day is over. My family is asleep. I'm not missing out on anything.
But maybe I'll go kill some time and play with my dog.
Yesterday was the first day of school for both girls. I have posted the obligatory first-day-back pictures. I have [honestly] hearted every single first-day-back post my friends and social media friends have posted. I even went for the "tears or cheers by the bay" first-day-back morning coffee with other Moms.
Also, you may have noticed that outside it feels like the sun is slow-cooking the earth like a pot of veggie broth.
Despite that heat, mixed with the excitement and energy involved in day 1 of 295 of the school year (anyone notice how often I add days together in these posts?), I didn't fall.
I didn't need a nap. I had errands done before morning was done. The laundry was folded (but not put away. I mean, baskets are like drawers, right?) The dishes were cleaned (but not put away. I mean, the dishwasher is like a cabinet, right?). The phone calls were returned. The year's after-school activities were scheduled, registered and in my planner (also, on Alexa, on the fridge, on Post-its, on my husband's calendar, on my kids' white boards, and I told my friends just in case I forgot what I have going on after school during the week).
This is pretty incredible. This must be what not having cog fog is like?
I ask because I don't remember.
I know my posts have been mostly shining a light on the positives of post-transplant life. I don't talk a lot about pre-transplant MS because, well, if I do remember it, it's really not great conversation fodder. But I will tell you that finding some clarity in my thinking has been a top shelf prayer for me.
Days like the first day of school are becoming more frequent, but they aren't consistent, unfortunately.
I had coffee with a friend recently and blacked out on an entire part of a conversation. I don't know if the look on my face matched the total confusion in my head, but as my friend repeated the bits I needed to restore, I felt my heart break apart in defeat. I was handed a Sorry!™ card and sent back to the home zone.
As we MS warriors do, I gave myself the proportionately allotted time to sulk, then grabbed a number 2 card from the pile and got out of the zone.
In the meantime, nearly 5 months post transplant and my other symptoms have been few and far between. Despite not being able to drink alcohol, there have been a handful of days when I walk like I have had quite a few glasses of wine and talk like I had a few after that. Loss of balance and slurred speech really come out when I get fatigued.
I don't mean to brag, but when I get fatigued, it's epic.
All kidding aside, there's no unit of measurement, no witty analogy for this. MS fatigue, chemo fatigue, transplant fatigue. Fatigue like this is NOT the same thing as tiredness. But, I'll talk about that another day.
For now, school bus is about to drop #2 off and we're headed out to karate. I think today is karate. Let me ask Alexa and check all my calendars.
Day +125 and positive it is.
If this were a stage show, I'd cue the music "ain't no mountain high enough" and put up a big-screen photo montage of me and my family climbing a huge chasm in the Adirondacks one day and tooling around the Catskills another.
I'd stand, stage left, so everyone could see the screen clearly, and begin my soliloquy:
A score of 4 (EDSS) several years ago, and my doctor told me
Too much sport could be tedious at times
Break my heart, I must not speak about it
In my mind it was nobler to suffer silently than to reveal
The aches and arrows of this shitty diagnosis.
Now here we are, on this journey
I climbed a mountain (from 9 to twelve)
With my vaulting ambition and a new immune system
And I'm kicking ass and the diagnosis they wrote it on
[pause for applause]
No, I'm not drinking. But I do feel high (Joking, Mom, I've never been high).
I can't believe how this summer has been. I believe it was me who told you I don't WANT to climb rocks after I started feeling stronger. But guess what? I spent the day with Matt and the girls in the Adirondacks climbing around a chasm. We even went rafting. It was mid-July and the heat didn't take me out. I tried not to make a deal out of it in case it was a one-time thing.
But come on! I mean, I climbed rocks in the heat of the day 3 months after a stem cell transplant!
I've been doing a lot of reflecting on the past decade. It's crashing my hard drive, the past ten years: changing family, changing homes, changing careers, changing stem cells, changing hair styles...
The last 10 set a precedent. I think I'm up for more change if it keeps going up hill like this.
Having run, with anger.
I'm approaching the three month mark. It's actually been 82 days since my transplant, 71 days since I've come home. As I've noted here (and not very consistently, my apologies) it's been a rollercoa...sorry, a ride of the non-linear sort. I've learned that I'm a horrific patient and I have no patience. I've also learned that a little wit, a lot of denial, and a treadmill will leave me in bed with a laptop and a day of canceled plans.
It's been one of those beginnings of summer that we all experience: let's hurry up and start having summer! Quick quick! Let's do this and that and then this! It's the 5th day, there's only 60 days left before school starts! AmIright? You know the drill.
On top of all the activity, last night was another restless night. While I'm trying to fall asleep it's hard to ignore the feelings in my legs that lead me to believe tomorrow is going to be a day where walking, and walking straight, will be a challenge. Normally, I would settle in with the girls and avoid everything so that I can just push through it without bringing attention to it. A quick whine to a friend or a husband, a cup of coffee. I'll get over it. You know, that kind of day.
But this time I got frustrated. Okay, a bit angry.
I don't want to make excuses (such as not getting good sleep or enough sleep so maybe I wasn't thinking straight) but I got up this morning ready to fight. I grabbed a freshly-brewed coffee, put the dog in the car and drove her to daycare with a plan percolating: I will beat the weak with a short stint on the treadmill. Build strength at a faster rate than the weakness and at least I won't get worse. Yes, good plan! Push past it! Throw on an old episode of The Newsroom and get walking!
Yes, thanks for asking-- I do feel like someone who just tried to speed walk a 5k without prior training or warming up at all and already couldn't walk well and was trying to avoid being in bed all day.
I put a picture of my follicle-y challenged head up on my social media page with hashtag #HSCTlooksgoodonme (I have just one social media account, it's the one "for older people" as my niece tells me. I won't reveal which one, but it rhymes with "pace nook" Also, sorry, Mom, I used the "f" from the "f" word). I was feeling good that day. Had some energy. Realized that I need to prepare some of my people for the baldness that is my mug before I just hit 'em with the shiny.
It was well received--thank you my friends, my loved ones.
This no-hair-no-make-up-no-care thing is my new thing.
I asked my stemmie sister, Christene, to help me out with a project and collect as many bald, happy, HSCT warrior pics to boost the hashtag.
We got on our HSCT community forum and asked for my stemmie brothers and sisters to lend us a hand.
Holy stem cells, batman! We're bald!
By the end of the day (and as the day continues I keep adding!), I was so conditioned to seeing bald heads, that now I get startled looking at people with hair.
What strikes us all the most is the smiles. You'll find just happy faces. Why? We just went through a hellish (sorry, Mom!) procedure, why are we smiling?
Because we're beating this thing that we know could take our abilities away any time.
We're winning.Please, take a look at our picture quilt--it's truly a blessing to be fighting with these warriors! Please share this blog with the hashtag and see how many HSCT Warriors are in your life you didn't know about!
It's 32 days since my transplant. I've been home for 3 weeks. I've rested for a couple of those.
I've been to baseball games, dentist appointments, karate classes, dance classes, a dance recital, art class, doctor's appointments, dog groomer, oil changes... You know, typical fortnight.
In all honesty, thanks to my mother-in-law and Meg, I've been able to pick and choose what I can do while they did all of the above and groceries, laundry, cleaning, driving, mailing...
So here I am, in bed, struggling with my own thoughts. Battling that time demon again. I've got Dr. Elias' discharge orders in my head: go home and resume life, that's what you came here for. But be smart and exercise caution.
I think one of those two are subjective measurements.
But the thing is, the healing process is not subjective. And it's gonna take time. I don't know why the delayed reaction, but the reality of what my body just went through is only just hitting me now. And the reality of what I can do and what I shouldn't do, until I'm healed, is just starting to occur to me. Wow.
And now hurry up and wait. I've said it before: time is the worst side effect of this treatment. I am the least patient patient I know.
This attribute has both helped me and hurt me throughout my life. My father always said that your 40's are the best years. In your 20's you get to be an idiot and make mistakes ("idiot" is not the word he used, but I'm supposed to blog with a G rating), 30's is when you buckle down and build, and 40's is when you finally get to enjoy it.
So far, he's right on. The only issue: I heard this advice as a 20-something, so I was in a rush to get to 40.
I might be having a very bad cog fog day, but as I consider the past 44 years, it's a blur of hurry and then a sudden slam into the present moment. Don't get me wrong, my own life-art gallery is fantastic. It's full of color. Let me think for a second if I remember specifics.
A side note: I am one of the lucky 46 million people who are vaguely defined as a generation born "somewhere between the '60's and '80's." (we don't like to be defined, thank you very much, thus the "X" label). I had that childhood with only a Commodore 64 and when phones hung up and bored was when the best things happened and always outside where our bikes were in heaps on the ground because there was no time to put the kickstand down and our knee-high socks had stripes at the top and we wore plastic watches but still used the sounds of peepers to know when to come home and I don't think we ever told our parents where we were and I don't think they asked.
My 20's and 30's were great because I met my love and began a short but life-altering stint in publishing and met the greatest people from both above and below my alphabet-letter generation. I did some "meh" writing. I did some great writing. I raced a car once and I also got to drive a race car in Toledo. I got to Taiwan to see an old man make auto parts in a factory and I got to buy bunches of goji berries from a kid on the roadside, both of whom were supporting their families. I got to Tallin to eat cake in the old executioner's palace with finnic people. I got to go with my cousin on his lobster boat and wrangle rubber bands onto the big claw. I rode a bike from my rented room to two day jobs, making no money while not being aware that I should be trying to. I got to spend each week lending a hand to Moms and Dads who once lived on the street in my own city. I got to discover a new city, the 3rd in as many years, and watch my husband become amazing at something they say is a practice. I got to carry my first-born without knowing she was a she. I got to grow another right after my first was born. I get to raise two girls.
I really have put some good color on my palette these past four decades. And the days ahead look primed for more now that I've had HSCT and stopped MS from taking me.
I guess I can be patient with this process a little longer and take the down time to sketch out some new ideas while I heal.
I feel better about it now. Glad we had this talk.
While you are staring studying my new Mr. Magoo/academic Dr. Evil image, you'll quickly notice that the remaining small patch of hair on the back of my head closely resembles the shape of Australia. My first thought is that it's a shout out de mes cheveux to my dear friend Jess who leads my cheer section down under in New South Wales. My second thought is that it has to go.
This seems to be a theme right now. And I'm not talking side effects like hair loss. Yes, I'm still dealing with a few, but that's a boring read, I'll be fine. I'm talking about what else is starting to go.
Let me just rewind for a minute.
On the way back from Logan airport at 1 a.m. 10 days ago, we are flying down Rt. 3 during construction hours. That is to say, we're dodging cars who wait until last second to merge out of lane closures, navigating lane shifts, squinting at lights coming at us, blocking the construction lamps and getting dizzy from the blue lights reminding us of those orange signs lining the construction zone.
A month ago, I would have gripped the "oh shit" handle above the window and held on until Matt got us through that visual chaos. My mind could just not navigate all the different lights, lanes and cars.
But on that morning, even after a long day of air travel and anticipation of getting home, I didn't have any of that awful muddle. I didn't really notice it at first. It was a rearview thought and a quick mention to Matt a few miles later. It took me a minute to realize that I didn't just hold my breath through all of that.
I heard so many HSCT patients talk of the cog fog lift immediately after treatment. Is this the beginning? Am I one of the lucky few with symptom reversal?
Will I suddenly figure out the Birch and Swinnerton-Dyer conjecture?
I just I don't know yet.
In the meantime, I'm able to get up with the girls and get them ready for school with the help of my mother-in-law. After they board the bus, I spend the rest of the day fighting with myself about what I can do vs. what I shouldn't do. I'm just 10 days home and 12 days out of severe neutropenia. I need to take it easy.
The doctors call this part of recovery the "rollercoaster". I will spend the next 18 months feeling better than ever some days, but could also feel worse than before on other days. So here are a few things to keep in mind:
What I have been doing is sitting on the rocker on the front porch while the girls put on dance shows, ride their bikes around, hit tennis balls off the side of the house, practice their golf swings and run up to me every so often to hug me and tell me they're glad I'm home. I take walks up the road and sit in another rocker on my bestie's front porch. Walk home. Repeat.
As for the rollercoaster, I'm ready. And the first thing I'm going to do is stop using the word rollercoaster. In my community of HSCT warriors, the word is used so often I cringe when I hear it. Even my doctors in Mexico laughed whenever they used it because they know how much I hate that analogy.
My stemmie sister, Christene, knows me well enough to not use it. She calls it "non-linear healing."
I like it. It sounds so scientific-y.
Surprise, I'm home! Well, maybe not to a surprise to a lot of you who have known since Friday. I was discharged on Wednesday afternoon and by the wee morning hours of Friday, was home. The girls expected me Saturday evening so it was so fun to see their surprised faces and little bodies charge down the hall at me when they woke up. It was a wonderful reunion. More on that later.
But it's been a very difficult week. Our beloved friend Lindsay got her wings. Lindsay was a wife of 10 years to an incredible man and a mother of three perfect children. Lindsay was so many things to so many people.
Lindsay was so strong. I looked up to her. No, really, she was very, very tall. That strong jaw and gorgeous Swedish face gave away every thought, every passionate feeling she had in each moment. She had zero tolerance for hate-mongering and pretension, but had this radar that found those with her same zest for adventure.
You knew if she loved you and you felt lucky when she did.
When you entered her house (her door, like the rest on our road, was always open), inevitably she was cooking up something while the music, kids and dog were within a 10 foot range, because why would you want to be in a different room? When you walked into any room, you could find her by that laugh. She would open her mouth wide, like she's about to let out a loud one, but it would take a few seconds to exit her belly with a sharp "AAAAAAHHHH!" followed by "hahahaha!". If I were a sound editor, I'd think the audio and video were out of sync. It's hard to tell if she were laughing with someone or making someone laugh.
She was so creative. Something she never gave herself credit for being. She loved art, the ocean, the outdoors. Her mom, an artist and cottage gardener, strongly influenced her style. If you were just meeting Lindsay, you'd get to know her immediately upon entering her home. The carefully curated art in their home reflects her loves: the sea, the untouched outdoors, the colors of her native New England. She has candid family pictures in key places so you have to look when you set the table or grab a wine glass. Her and Jared and littles. Skiing, sledding, swimming, hiking, biking, playing soccer, hockey, softball... Go just room to room and everything you need to know will be answered. A life-art gallery. Then you would go back into the kitchen and sip wine and watch while she and Jared whipped up a gourmet meal to enjoy around the island or out on the deck.
If you were on her back deck, she'd paint you a picture of her plans for the ultimate suburban farm yard. She wanted chickens, a pig for one of her daughters, and maybe another dog. A big dog. She and her husband loved big dogs and I don't think it's a secret to anyone that my Newfoundland loved Linds more than me. Her little Chihuahua was often tucked under her arm while she cheated on her with such talk.
She has so many friends. She loved them all so much that even if you just met her recently, you would quickly hear about all of her all of her friends, and they would learn about you. Every single one of her friends added to her life because she always recognised their gifts and wanted a part of them.
Lindsay was one of the first people in the door just minutes after I was diagnosed with MS. It was after dark. I had just left her at one of our neighborhood gatherings. I walked in the door to the phone ringing from the doctor. I don't even remember telling them. I just remember Lindsay and Kelly suddenly sitting with me on the bottom step of the stairs. With wine. They stayed until Matt came home. Years later, making the decision about HSCT was an easy sell to Lindsay and she was with me through the whole pre-treatment process and even gave me tips about chemo.
I know I am just one of many who raise their hand when asked if Lindsay was part of a significant moment in their lives. When you see all of these raised hands, you realize that Lindsay managed to bring the most unlikely of people together by this. Now we are all connected by her forever.
What a gift.
As of yesterday, we're out of severe neutropenia! We are out of the land of do-not-do-this-and-do-not-eat-that!
This doesn't mean we can jump back in and toast to our futures with wine just yet. It just means we can give our exhausted cleaning staff a day off and we don't have to be up in the early morning for blood draws and stem stim shots.
Still, break out the carbonated grape juice.
Not to brag, but, my stemmie sister and I *really* know how to break out of neutropenia. We're like, total trend setters.
They tell us we are the the first two MS patients in this clinic to have their top-off chemo's on a Tuesday. It's rare to have it on a Wednesday. It's usually a Thursday procedure. So when I say we're good, I mean we're good good.
It doesn't surprise me in the least. We were set up for success. First, we have all of your prayers and healing thoughts; I have a mobile cheerleading squad that should have their own ESPN channel; my stemmie sis and I have this unspoken warrior contract to keep each other up and running; and, most excitingly, today is Matt and my anniversary. What a cocktail.
And we honeymooned in Mexico. Apparently, all good things begin in Mexico.
On this day 19 years ago, I was running up the aisle to get married and eat cake. It was lovely and very joyful. Many of you remember this day, I hope.
Today, much to my surprise, there is cake! Yes, you guessed it: The mobile cheerleading squad came in during chemo with a cake, a bottle of wine for Matt and a bottle of bubbly rose lemonade for me! A beautiful card and a big balloon made our room actually cheerful! To make it even better, my fave nurse attended to me all day. Oh, and the kind of chemo I got today has no side effects. How's that for a top-off to top it off?
I'm glad you asked about what I meant by "the kind of chemo I got today".
The first four days of chemo, in the early days of treatment, were of high-dose cyclophosphamide. This chemo attacks all rapidly dividing cells. Cyclophosphamide is used in cancer treatment and cancer cells are rapidly dividing. Cy takes it all out, doesn't care that hair, stomach, and mouth cells are rapidly dividing as well. But those grow back. Hopefully the bad guys don't. It also wipes out the immune system.
So why use it for MS? While this is procedure is a stem cell transplant, the key is actually in the chemotherapy. No chemo, no cure. We want to get rid of the old immune system and start from scratch. Instead of just pumping me with stem cells, why not wipe the slate clean first?
Let's remember, my immune system is attacking me. My T cells are very confused. The three amigos--regulatory T cells, helper T cells, and killer T cells--usually work together to keep the bad guys out. But someone is feeding them bad intel and so they're all willy-nilly in their attacks.
But the mystery is: what is feeding the T cells the wrong intel? What is responsible for the confusion about what is good and what is bad? We've been following leads for awhile now, and finding that B cells are looking guilty.
So the chemo du jour is Rituximab. Rituximab is a monoclonal antibody which targets the B cells only. So our last strategy is to be more specific what we take out. Cyclophosphamide paved the way for the Rituximab to finish it off. I'm officially wiped clean and ready to rebuild this city.
So, now it's official. The treatment is done!
I can spend the rest of the last treatment day celebrating the past 19 years and making new vows for the next 19.
What a day. I'm wiped.
When in severe neutropenia (don't google it), I have to make sure that I live like anything that touches me could make me sick. I requires the services of a sister, a husband, a cleaning crew, a doctor on call and a pair of fuzzy slippers. I get a wardrobe change twice daily and eat off menu. I can't have fresh fruit or vegetables, and only meat which has been roasted or boiled to the consistency of a yoga mat. Only reverse osmosis water. No nuts, berries, dairy, sliced meat or runny eggs. It really isn't that bad, and it's only while in severe neutropenia. I'm really not set up to complain about anything happening here.
I have been reserved in my complaints. I came in expecting much worse. And I have been overwhelmed in the humanity infused in the Mexican method of this transplant.
It's been worth it. 30 days for 30 years, says my husband.
But the worst side effect of neutropenia is time. There are no pills for thinking-while-fatigued-post-chemo. I have to admit that in the lowest moments here, I've doubted myself.
Let's take a ride on my cerebrum for a moment and tour my daily affirmations.
Daily reminder #1: There was no other decision. The drugs offered to me didn't stack against the data that this one-time procedure has proven. I'm young, you guys! I have two very active kids, date nights with Matt to get back to, girls nights, volunteering. I know many MS warriors and saw my future. I needed to get ahead of this.
Daily reminder #2: Keep the naysayers out of the orchestra section. Remember how incredulous you were when one doctor said "we have drugs to make you comfortable" and the other who said "wait until you're in a wheelchair before you do this". I needed to get ahead of this.
Daily reminder #3: In a short time, this will be a 2nd line treatment for MS in the U.S.--dare I say even a 1st line treatment someday--and it won't be such a strange/traumatic sounding option. And I will be able to be someone's mobile cheerleading squad. I'm honored to be the metric for the next person who needs to get ahead of this.
Daily reminder #4: FaceTime the girls and get a visual reminder of why you're here. I've had breakfast, dinner and bedtime with them everyday. They ask details about my treatment so they know what to expect. When my hair started falling out and Cheryl shaved it for me, they cheered for me. Sissy wants to shave hers too. They keep wondering if my eyebrows will be next (spoiler alert: yep).
Daily reminder #5: Pick up your phone, read all the texts, emails, fb posts. Listen to your voicemail. You have messages from your world-wide village reminding you of #1-#4. Tell them all how much you love them.
I have been meaning to catch everyone up since my last post, but you know how it is the couple of days after a big birthday party...
It started as a quiet day: a Sunday, so Hematology and Oncology wasn't bustling with patients and doctors. My stemmie sister and I went in to our usual rooms through darkened lobby and got prepped to party with a bag of stem cells.
The doctors were there, the nurses, all on a Sunday morning. I imagined they all wanted to squeeze the bag like an empty toothpaste tube so they could back to their own families. But I still got a loving squeeze by my nurse, followed by lots of time pulling the lumps of hair off my shawl that had been falling out since the previous day. Dr. Gomez--a bit of a celebrity in my world--joked about how the stem cells will make the MS suddenly leave my body like a scene from the exorcist (he often uses horror movie analogies. He gets me).
And then I look up at the empty bag and it's over. I gave 11.8 million stem cells per kilo of weight, so that little bag hanging had hundreds of millions of stem cells. And it was over. This is what I came for. Not a single bit of pain upon entry. Just a little extra heartbeat and a flush of excitement.
We clapped, took out my port for the last time. I was saying something to my doctor behind me as the doors swung open to the darkened lobby, but quickly lost words when I saw my mobile cheerleading squad: There they were, in day-after-Saturday-night attire, singing happy birthday, cheering, and holding candles and a little cake. They all came out on a Sunday to cheer me and my stemmie sister on. I can't even. These guys.
It was a wonderful day. I came back to the apartment to even more love and cheers from all of you! I spent quite a lot of time reading and hearing your messages. Thank you for making this the best birthday.
I've been sleeping since Sunday night. I wake enough to take my meds, get my shot, eat something. I wish I had more to say even now, but I mustered up enough energy to write just this.
From here on out, I am in neutropenia. I have no immune system to fight for me until the new stemmies do their job and start growing me a new one. So, for the next 10 days or so, it's masks, no leaving the apartment, no eating a VERY long list of foods, chronic hand washing, showers and wardrobe changes twice a day, and a cleaning crew comes in with heavier than usual cleaners. I'm told that some patients come out more quickly than 10 days. I think I did my overachieving with the stem cell harvest, but let's see if I can give it another try.
Once I'm out of deep neutropenia and cleared to be out of the bubble, I will get one more top-off of chemo. Ugh, right? But Dr. Gomez reminds me: in every horror movie, the bad guy gets killed by the good guy. But inevitably, as the good guy walks away, the bad guy manages to get up one more time. This last dose of chemo, he says, is just to make sure the bad guy stays down.
Now, off for some sweet dreams.
[picks mic up and runs a Lysol wipe over it, then sprays down with Lysol, then applies Purell to hands.]
Stem cells all around! The procedure was fascinating. It was not fun, but it was fascinating. I won't go into detail. Let me say this: apheresis stem cell collection is not painful. Sitting for five hours with your arms contorted and not able to move will cause pain. I also learned that this procedure is a little different for each patient depending on the disease. MS patients fare differently through aphaeresis collection, as it tends to trigger MS symptoms because of having to hold still. Movement can alleviate lots of symptoms, so when you can't, the symptoms are amplified. They don't call me Fidgety Bridgety for nothin'.
Cheryl and Meg weren't allowed in the room with me, unfortunately, but I was kept company by about 8 doctors and nurses in the room with me at all times. I have to tell you, I can't gush enough about the doctors and staff here. Each morning when we have to be at the clinic, we're greeted at the van by two staff. Five minutes later when we arrive at the clinic, there are 4 others waiting on the sidewalk waving while we pull up to the curb. They walk us in together and tell us about the schedule, get us tucked into our chair in our private chemo room or apheresis room, and then go wait in the lounge while we have chemo or apheresis. They take turns coming to check on us as often as the doctors and nurses do. When it's over, the same gaggle of staff walk us back out to the van and wave us off. I hate using this word, but it's literally like having a mobile cheerleading squad follow me around. During apheresis collection, the doctors were chanting "you can do it!" with every countdown of the hours. They just needed a synchronized dance routine.
Today was spent back in Hematology and Internal Medicine for the first of 2 more days of chemo. This round started out a little worse than the first, but after this post I plan to eat some delicious food that Cheryl made me, and camp out for the rest of the day and night.
Meg flew back today. I'm sad to see her go, it was very difficult and I know she had a difficult time with it, too. I can't imagine this trip starting out any other way. The staff was sad to see her go as well. She hit it off with them, and with my stemmie sister and her husband as well. We'll always have Mexico, Meg. So that means we'll have to come back on my 1 year bday and do Mexico a little differently. I love you so much, Meaghon Marie. For all you do. Every day. And I'm so proud of you.
Cheryl is here! New adventures begin! She made it in Wednesday and got familiar with the place immediately. I'm so psyched that the three of us had time together before Meg left. It was special to me to have 2 of my sisters here. So far Cheryl has cleaned the apartment three times, gotten me to chemo and back, has located the grocery store, the cleaning supplies, the laundry, the buckets (just in case), and has whipped up her usual comfort foods. I'm working on a one-syllable request system: "meh" "you want a water?" "mmph" "you need to lay down" "hrmp" "you want curried chicken with rice and spinach?"
Cheryl speaks 4 languages. She'll get it.
So, I'll sit at the apheresis machine for 5 hours today. This machine is amazing--like something from Mr. Magorium's Wonder Emporium, it will magically pull the blood from my arm, run it through this spinner and shake the stem cells out, then reroute it back into my arm. I know that this is a very scientific explanation and sounds complicated, but basically they're gonna spin the cells out. Then they stick them in a fridge for a couple of days until I get them back.
This day is not just significant because of harvest, but it also marks the timeline where things get going again. Meg and I were settled into our routine of waking up to go rest quite well, but now Cheryl is here, too, and we go straight from harvest to two more days of chemo. Then, if all goes according to plan, my stemmie birthday will be Sunday!
I will post again later this evening after harvest. I can't thank you enough for all the texts and calls I've gotten today giving me strength! I'll return every single text tonight!
I've run out of Grace and Frankie. Halfway through Brooklyn 99. So why not try to answer texts and pm's under the influence of chemo?
I replied to a message sent to my daughter's TBall team with a message to my husband. I didn't say happy birthday to my cousin, but SOMEONE was greeted with a nice message. I also replied to a message from another patient here via my cousin's cell phone in Vermont.
Meg isn't correcting me because, well, amusement.
It's really not that bad, honestly. This kind of cognitive "fog" is not far off from the norm for me. It's one of the symptoms I am hoping will be reversed. As I've said before, I am completely aware that the measure of success here is halting the progression of this disease. I'm losing this summer to make sure I have the next 50 summers of fun. But if there would be one symptom I could choose to reverse, it would be cog fog. Take my hair, give me back my clarity.
This is a good week coming up. Today and tomorrow we continue the twice daily stem stim shots, but also tomorrow we find out how well they're working. If all goes according to plan, HARVEST IS THURSDAY! The best part about Harvest is the cold turkey sandwiches the next day.
Meanwhile, I get to see the girls on FaceTime several times per day and we just hang out on the phone. Matt is, of course, being an amazing Mom and Dad, but Cheryl has also made the first week fun. She even got them to the '80's themed dance party at school on Friday night, dressed in neon with side ponies and layered skirts Cindi Lauper style. It was totally rad.
Cheryl also tells me she managed to get all the sewing done from the sewing basket. Just a little background: if something rips or loses a button and needs to go in the sewing pile, the girls know they'll never see it again. It's one of those childhood realities they learned very young. Mary had the sneaky idea to give Cheryl the basket when I left. Cheryl complied. Pfft. Rookie.
As Mary was cackling about this to me on FaceTime last night, I hear her little sister in the background yell "Yeah, and I told her next she can scrub my floors!" We all laughed together. Floors! AmIright?
Stay tuned. Big week! And thank you for all of your wonderful messages! They are keeping me grounded and in fight mode! I thank God for you all every day.
Today no chemo but my first of 2x/day shots to stim the stems and see the hema/onc. We'll do this several x/day 4 the rest of the week.
4get it, I can't type like this.
We just returned from a consult with doctor and everything is on schedule. Which is to say, for the next 5 days I get shots twice a day to stimulate my stem cells. That means lots of Grace and Frankie rest and fluids. I am told that the fatigue will begin to fade by tomorrow or the next day and I'll get some energy back. Enough to maybe throw on a mask and take a look around this beautiful city. After that, my anemia kicks in. My doctor tried to describe the kind of fatigue that I can only imagine is the same kind every Mom who is reading this can understand--like maybe that trip down the hallway is a little harder to walk because there are children holding on to your legs.
We're shooting for next Thursday to be the harvest day. I'm planning to give them 2 million stem cells. That oughtta do it. Maybe one for the pot.
We are on a countdown. Monday was considered day -13, day zero being the day I get my stem cells back. Like I ordered. Mid-April.
On day +1 I'll begin my descent into deep neutropenia for about 10 days or so. But I'm jumping ahead.
Plus, this post has turned into a lot of numbers and math.
Before I go on, let me say that I am overwhelmed and humbled by the calls, texts, messages, FaceTimes, and drop by's I have gotten since I made this public. I am so blessed. I have always known this, but this month has been truly something else. Thank you. Gracias.
The mountains here take my breath away. Really, it's not the cyclophosphamide doing that to my heart. Monterrey is the bottom of a gorgeous bowl made of 5,970 ft of rock. Cerro de la Silla is also the national monument here in the city. It looks like a saddle, thus called "saddle mountain" and is the backdrop to everything you see in the skyline. Houses line the basin and the infrastructure are a series of tours for the eyes, guiding you around all the features of Nuevo Leon's capitol city. Breath. Taking.
The apartment is better than advertised. And so are the staff. On the first day, a VERY long day of -ist visits (neurologist, cardiologist, internist, hematologist... you get the gist) we got to know the doctors and staff pretty well. Meg, me, my Stemmie sissy and her husband were together for 12 hours and had a lot of laughs. After an hour, it was obvious to the doctors that I had done my homework on this procedure enough that I could just do it myself. So we really just sat together between the ist appointments and learned about each other. There are staff here who know first hand what I am feeling and doing. This clinic is filled with patients from Mexico and all over the world coming here for treatment for cancer and MS. The doctors share the care of up to 35 patients per day. One of my doctors answered every. single. phone call. EVERY patient who needed him got his full attention. He asked me to call him instead of text him. He must have seen the look on my face because, what's a phone number? When was the last time your doctor said it's better to call me on my phone directly instead of text or leave a message with an answering service? Incredible.
Tomorrow I am going to introduce you to my new friends and post pics. Tonight, I am wiped out and I need to get some rest. I am going to save my energy for another FaceTime with my girls (who hid love notes in my bag so every time I pull a shirt out of my drawer a note falls out. They are just perfect). Matt has called, texted or FaceTimed me all day checking on me. He's my hero.
Day 2 chemo tomorrow.
It's funny to think of all the little things that will [hopefully] not be "Bridget normal" when I return from this treatment.
I say "Bridget normal" because there are symptoms that I had that I'm only finding out the past few years that aren't actually normal.
I remember asking my sister once, years ago, if she ever gets that feeling that someone poured soda in her scalp and felt the fizzle of the bubbles on her head. She gave me a very long look of confusion and simply said "Nope." Later, I discovered this is called dysesthesia. I also get paresthesia. Think of when you sit on your leg for too long and it "falls asleep." Now imagine having it all over your body for long periods of time, including on your head. I will get soda pop tingles or the more painful version of pins and needles on my head, in my arm, leg and even torso at times. Sometimes it will be followed by numbness.
Then there's the "MS Hug". This is a feeling described as someone hugging you too hard around your middle. You feel like the air is getting pushed out of you because your back and rib area are being squeezed too tight. A few years ago, my friend took me to ER because I thought I was having heart issues. Everything was normal. I even wore a halter for the third time in my life to monitor those weird sensations. Again, I later discovered that this was caused by MS.
For as long as I can remember (which isn't very far back, because, well, cog fog), I get these intermittent electric shocks down my neck. They come out of nowhere and it feels like the piercing shock you get when you stick your finger in a light socket. There's a name for that, too: Lhermitte's sign.
Then there's that awful pain that comes with trigeminal neuralgia. The trigeminal nerve covers your face and it feels like my mouth, sinuses and teeth are burning. I have no Bridget-ism for this one.
I just thought everyone felt these things. These Bridget-isms.
I am not going into this treatment with blinders. The goal is to halt the progression of this MonSter (see what I did there? It's a common term used by MS-ers! Yes, we have a language. No, there's no dictionary). The doctors are very clear about this and it's important to remember that the goal is to stop it. Some patients get the bonus points: symptom reversal.
How great would it be to have this treatment and then suddenly stop getting hugged, soda poured on me and shocked with electricity!
Another reason I chose this clinic and Dr. Ruiz: I'm having a major medical procedure and I'm not going to sit in a hospital bed being spoon fed by personnel in haz mat suits.
Dr. Ruiz found that the biggest risk to immunosuppressed and neutropenic patients is, well, the hospital. As my doctor-nephew said, "You don't want to know what you can find on those white coats." So, they put us up in a great pad, monitor us with carers and nurses, and bring us into the hospital just for the big stuff, like chemo, stem cell harvest and graft. Otherwise, we have a two-bedroom with a rooftop garden and a healing view of the mountains. So, maybe this IS kind of like a vacay for us?
And by us, I mean my two sisters (Cheryl, oldest, and Meg, youngest) and husband. This post really is about them.
I'm one of the lucky--no--blessed women I know to have family and a partner who are willing to drop their daily lives and jobs to get me through this. I could hire a nurse to take care of me 24/7, even live with me in the apartment. But my husband said he won't allow it. Going through this with a stranger was out of the question (Ladies, he's mine!)
Matt and Cheryl will stay state-side at the house with the girls while Meg and I party move into the apartment and start treatment. Cheryl will relieve Meg of puke caretaking about halfway through for about 10 more days until Matt gets there. Then he will bring me home.
My sisters and husband just know how to make me feel better. I couldn't have asked for a better care plan. Actually, I feel bad that Meg's first trip to Mexico is to clean up my vomit and shave my head when my hair starts falling out. I was lamenting to Cheryl about this. She said not to worry, if we were just taking a vacation together we'd still be doing that.
See? I'll be just fine.
What exactly is MS? Quick summary: My current immune system attacks the protective sheath, called myelin, around the nerves in my brain and causes communication problems between my brain and the rest of my body. Think of that protective coating around all of the wires and cables in your home. It provides information and electricity to everything that runs your home from the lights to the dishwasher and computer. Now, imagine that the coating around the wires was stripped and the thin wire inside is exposed and damaged. Now you’re having brown outs and blown fuses. Eventually, the wires deteriorate or become permanently damaged. But with MS, there’s no calling the cable guy or electrician.
MS is generally different for everyone. The symptoms and degree of disability can vary with every MS patient you meet. I have been diagnosed with Relapsing Remitting MS (RRMS). Which means I go through periods of relapse and periods of time with no symptoms. I have lesions on my brain and murky spinal fluid. I have numbness. I also have pain. I have fatigue that a mom of 10 could relate to. I have confusion that a kid with 10 siblings could relate to. Most of you who know me had/have no idea. Many of my symptoms are invisible and can be managed without making it obvious. Good on me.
This past year, I have been researching methods of slowing down the progression of this disease. I spent the last two years poking myself with needles every other day. Those slowed it down a bit. Not good enough. Those injections had their own side effects. I needed to find something more. Something more hopeful, because I don’t know what level of disability the next relapse will bring. Or the relapse after that. Or after that. There are other disease-modifying medications I could try if I wanted to throw away the needles. Their side effects include brain damage and liver failure.
Autologous hematopoietic stem cell transplantation (HSCT, aHSCT or autoHSCT) is the hope I found. The “a” or “auto” simply means that I will be using my own stem cells. It has been an approved and useful treatment for multiple mylema, non Hodgkins lymphoma, Hodgkins disease, Acute myeloid leukemia, and neuroblastoma, to name a few, since the late '60's. This procedure has been performed more than 2 million times since 1967 in fact. Nearly two decades ago, doctors discovered it can halt the progression of MS as well. Outside of the US, HSCT has been a treatment for MS patients, but the the FDA has yet to approve it for my particular autoimmune disease. Many have asked me why I would risk such a treatment if not approved by our own FDA? As a fellow MS-er said “There is 100% certainty of disability with MS. There is 78% chance I won’t have disability with HSCT.” I have read, I have traveled, I have met other patients. I’ve done my homework. I just cannot wait for the FDA. While they are well-intentioned, they aren't helping me here. And time=ability.
HSCT will wipe out the memory of MS from my immune system and will reboot it with new stem cells harvested from my blood. These new stem cells will move in having no idea MS was the previous tenant. It will take one month. First, chemo. Next, mobilize my stem cells. Harvest them. Freeze them. More chemo. Get my new stemmies back. Go home.
I’ll be nuetropenic for upwards of 12 days. That means I’ll be isolated from the world and kept in a sterile enviroment until I’m cleared to go back to the real world.The procedure is quite impressive and much more complicated than I have written here, but this nutshell version is accurate enough. The medical articles on this treatment read like horror stories, but if you break it down into steps, it actually turns into a thriller.
Why would I go to Mexico? After learning about HSCT, I found out about two doctors who have worked tirelessly in their careers to perfect this treatment for so many patients with cancer and disabling diseases. They are in Mexico.
Dr. Guillermo Ruiz Arguelles is the head of Clinica Ruiz, a private clinic and the largest center in the world for HSCT for MS. Dr. Ruiz, located in Puebla, has an arm-length list of academic achievements internationally, including being a distinguished Mayo Clinic Alumni and a Fellow of the American College of Physicians. He has lead the International Hematology Society as President, is a member of the Royal Academy of Medicine, and has published hundreds of papers in medical journals in dozens of countries. Don't get me started on the awards he received, but most recently he was given the Distinguished Service Award by the Center for International Blood and Marrow Transplant Research (CIBMTR)
At the Monterrey clinic is Dr. Ruiz's partner in bone marrow transplant research, and fellow CIBMTR award recipient, Dr. David Gomez-Alamager. Dr. Gomez, like Dr. Ruiz, has spent his career treating leukemia, lymphomas and multiple myeloma to name just a few. He is the head of Hematology at the University Hospital in Monterrey and the Director of the Stem Cell Transplantation Program. As a matter of fact, his is the only unit in all of Mexico with Foundation for the Accreditation of Cell Therapy (FACT) Accreditation (I link this, because this University of Nebraska Medical Center sets the U.S. standards for cellular therapy. I invite you to click the link and see if the hospitals in your area have this accreditation). He is a member of the American Society of Hematology, American Society of Clinical Oncology, the International Society of Hematology, ASBMT and CIBMTR... I want to continue typing all of his credentials, but the facts I need to know are these: between Dr. Ruiz and Dr. Gomez are among the most recognizable names in hematology and oncology around the world.
So there's your answer. Matt (my husband, my rock, my partner... and my attorney) and I decided if I’m going to do this, I will go to the best in the world who have done this treatment hundreds and hundreds of times. I won’t find that in the US, even after it’s approved by the FDA.
I will be checking into the Monterrey clinic on April 1, with Dr. Gomez. If all goes well, I’ll celebrate my Stem Cell Birthday on April 14 (Hallmark doesn’t make cards for that, I checked).
I will have no hair when I return. I will spend the next 18-24 months spot-checking my blood work constantly. I will be isolated. I will be getting stronger. I will be finding balance. I will feel no pain. I will gain feeling. I’ll be very busy.
(I'll keep adding more blogs here)