2 Years – 24 Months – 730 Days

Well, happy re-birthday to me! My actual birthday is exactly one month from today (47!), but today, April 24, 2019, it has been 730 days since I had my stroke. Since my brain decided, for some still unknown reason, to bleed out. Since I could walk normally. Since I could run, climb a ladder, jump, do yoga, lift my arms up over my head, shave my armpits without so much damn work, since I could drive with my right foot, since I could bend my toes and crack the knuckles.

So much has changed in this 2 year period. But so much hasn’t either. I’m still “me”. I like to joke a lot, although I will NEVER again jokingly say that something is going to make me “stroke out”. I said it before my stroke often, but now that I’ve lived through it, I just can’t. In fact, I cringe when someone else says it. I know they absolutely don’t mean anything by it, I just know what it’s like to go through it. Not the actual stroke – I have no memory of that (other than going to to hospital by ambulance and getting in the ER room for just a few minutes. That’s it. A month of my life is completely wiped out.). But the 1 year and 11 months that followed the stroke, I sure do remember.

Just for informational purposes, my stroke was due to a bleed in my brain, hemorrhagic, (left thalamus). Other people have strokes due to blood clots. Those strokes, ischemic, are different from hemorrhagic strokes. Ischemic stroke patients may have the option of TPA, or clot busting, and the impact may be different. In fact, the same exact type of stroke in the same exact location of the brain can result in very different outcomes. The brain is so incredible and so hard to say “x + y = z” (“if you do this and this, you’ll get this”). There’s no magic formula or recipe to stroke recovery. Unfortunately. It’s so hard to hear someone say that they know someone who has had a stroke and recovered. I appreciate the information, I really do, but my type of stroke, in my part of the brain, on the day I had it, in my body is going to be different than another person. It’s true of any illness or disease – like when I had breast cancer I would think “my cancer is different because my body is different”.

I know I’ve come a LONG way in my recovery and yet I still have a ways to go. It’s so hard when you want your body to do something and it just can’t or won’t. I saw my dental hygienist for a cleaning recently and she commented on how much better my walking is. I think for the people I see every 6 months – dentist, endocrinologist, hair dresser – my recovery seems different at each visit. Living in it, day in and day out it seems like it doesn’t really change all that much. So, here’s where I am at this point in my recovery:

*I feel like I have a pretty strong core. I can stand on my left leg alone if I feel I’m getting off balance.

*I’m pretty balanced on my feet. Until something takes my attention or trips me up (literally and/or figuratively). That being said, I pretty much only go to PT, doctor appointments, and occasionally the grocery to grab a few things. I can’t travel by myself and I don’t think I can fly – I remember being in the hospital and being told “no flying”. I ONLY wear athletic shoes. I miss wearing sandals or even no shoes. But my feet just don’t want to cooperate enough for that yet.

*My right foot rotates – I say it rotates outward but my stroke doctor says it rotates inward (I tend to think of things backward like this – like I’ll ask Tony to turn the thermostat down, which to me means literally turning it down but to him means making it warmer. Now he’ll ask “do you mean make it warmer or cooler?” Lol!). Whatever, it’s just how my brain is wired I guess.

*My knee is hardly “snapping” at all. Around Christmas time I noticed my knee wasn’t snapping in the front of the kneecap like it had been, only in the back. The first few days in April I noticed the back of my knee isn’t really snapping so much. It’s still weak but I feel like it’s getting there. I’ve also been practicing walking in flats around the house. I wear athletic shoes ALL.THE.TIME. 365 days. I miss wearing flats and sandals. Plus we’ve got a wedding coming up in 2020 and I can’t be wearing athletic shoes to that! So I have 14 months to practice in non-athletic shoes.

–UPDATE: Ok I started this post a while ago and I’m glad I did because since I started writing it, my knee has gone from snap city, snapping with every step in the front and back on my knee, to only snapping in the back a few weeks ago, to NO FREAKING SNAPPING AT ALL on Easter Sunday. Praise God!!! My knee is feeling stronger than it has since before my stroke! My hip still snaps and my ankle is still weak, but I believe I’m getting there. Happy tears!!

*I have heel strike about 40% of the time. This is where your heel is the first part of your foot the land on the floor. The other 60% of the time is when my foot flops down and I “clomp” (I hate how noisy it is!). I’m working on making less noise though.

*I get Botox injections every three months in my forearm, lower leg, and foot. The spasticity is getting better. Not 100% yet but I notice the tightness isn’t as bad as prior rounds. Hoping to see that come to an end soon because the injections, especially in my foot and lower leg are SO damn painful.

*I can lift my arm about 40%-50% of the way upward but I can’t hold it (yet). I want SO badly to get my arm up and hold it here (mostly so I can shave my armpits easier!). When I started going to PT at Max in November, one of the exercises they had me doing is where the PT holds my arm and pulls it upward and then they slowly lower it down while holding it steady. They also do this moving my arm outward. After a few visits I remember asking “So, what exactly are you looking to have happen here?” because I felt/saw nothing. She said she was looking for my arm muscles to “kick in” and start controlling the decent. About 6 weeks ago, I started getting a little action with my arm muscles. So, hold your arm up out in front of you and slowly bring it down. My arm muscles start to kick in when my arm reaches about halfway down. Not a lot, but I think it’s still progress.

*I don’t have a lot of use of my right hand. I can move my thumb pretty well and my index finger ok. The other 3 fingers are just hanging out waiting for action. Botox kind of cuts the ability to move them though. It’s good because without the Botox, my fingers are pretty clenched, but with the Botox I don’t have hardly any movement. It’s a trade off right now.

*I’m going to physical therapy twice a week – first thing Tuesday’s and Thursday’s. I did take 2 weeks off in late March/early April. I needed it. After being in it nonstop sometimes I just need a break from it. It’s going well though. I can usually tell something little (it’s so little – like a slight difference) about every couple of weeks. I really like being at Max instead of where I was going before. The exercises are the same 18 or so that I always do but the order may change. At the old place it was literally something different during PT every single time but the same 5 exercises in the same exact order. It was opposite extremes and yet so boring.

*Still driving with my left foot. I want to get back to driving with my right but I don’t have the strength in my right foot or the reaction time I would need. I want to practice soon though.

That’s all I can think of at the moment. I’m sure there’s something I’m forgetting. When I met with Dr. Villanueva in April, 2018, he told me “where you are at the 2 year mark is about as recovered as you can expect to get” (his words exactly – I remember them OH SO CLEARLY). By that time I had already heard from other stroke patients who took longer than 2 years to recover. While I truly appreciate his surgical skills and the fact that he (and the Lord!) saved me, I have to disagree with his statement as to the max recovery period. I truly believe that I WILL make improvements beyond the 2 year mark. I don’t think there’s a time stamp or expiration date to my recovery. Maybe he doesn’t want to give anyone false hope, but I’d rather hear “We just don’t know what your brain will do, or how much you recover, or how long it may take. It’s up to you to do the hard work expecting that you’ll recover at some point. We just don’t know what that will look like.” I understand not wanting to give false hope to patients, but I needed to hear that it is possible if I work hard enough at it. I mean, otherwise I might as well hang up my hat and settle. And we all know, I’m not about to settle!

I have come to think of stroke recovery as a road map with no end. This “road” is bumpy, winding, sometimes as-flat-as-freaking Alabama, and you can’t see what’s ahead. But I absolutely do not think that mile marker 730 days is the end of my trip. Maybe it’s more of a rest stop, but this journey will continue. It sucks sometimes, but what can you do? Give up? Stop working at it? Nah, I’m not old enough to do that. I’ve got too many years ahead of me (God willing!).

Thankfully, I have talked to other stroke patients and read books written by stroke patients, and hearing that they recovered is positive to my mental health. I have spoken with a man who had the same kind of stroke as me (hemorrhagic) in the same part of the brain (left thalamus) and he has totally recovered. I don’t know if I’ll get back to 100%, but I’ll settle for 99% (lol!).

My advice to any other stroke survivors would be this:

*Be patient with yourself and rest when you can as often as you can. A brain injury requires a lot of rest. Work hard, but rest well.

*Take advantage of any and all physical and occupational therapy you can. If your insurance offers PT benefits, use them up!

*Remember: There are 7 days in a week so if you are going to PT 1 or 2 days a week, there are still 5 or 6 more days for you to work on something on your own. Take advantage of all the days you can!

*Stroke recovery is EXHAUSTING. I would get so tired from the littlest activity when I first got home from the hospital. My stamina is better now, but I still get wiped out quicker than before my stroke. I’m not joking that I watch Wheel of Fortune at 7:00 and start winding down after it’s over at 7:30. I’m usually asleep by 8:00.

*Set goals and make plans to meet them. Not necessarily “therapy” goals either.

*If you don’t have PT equipment at home and are cleared to do exercises at home, Amazon has EVERYTHING you could imagine you’d need from a PT/OT perspective. Check Pinterest or Google for ideas for exercises you can do on your on. For me, I can’t/won’t rely on my 2 PT days to fully recover. In a week of 168 hours (thank you, Google!) I go to PT about 3 hours a week. That’s less than like 2% at PT versus 98% not. There’s still so much more I can do at home on my own. Honestly, some days I’m just too wiped out to do much. But I aim to do the same exercises I do at PT at home 2 or 3 additional days. Some weeks I get there and some I don’t. It’s ok.

Personally, I know I’ve made good progress, but it’s not enough. I want “me” back. And I believe I’ll get there eventually. Or die trying! 😊 God willing! I trust God, and I believe that everything happens for a reason. There is purpose in all things. God is in control, not me.

Also, I have to share a picture of my iPhone calendar. Dr. Gormley does my Botox every 3 months and then I see him in his office a month after the injections. I had my last Botox on March 26, 2019, and a few days after I got a call with my follow up appointment. I was busy with work so I jotted the day and time on a post it. Later I went to enter the appointment in my iPhone calendar and realized that it is almost exactly 2 years after my stroke. Stroke was on April 24, 2017, around 12:00pm. My appointment is April 24, 2019 at 11:20am. Accident? I think not.

Here’s to another 365+ days of recovering! If you’ve made it to the end of this super long post, I’ll give you a dollar! (Just kidding! This is a joke my mom makes when she leaves a long voicemail because she knows I struggle listening to the whole thing! ADD probs. 😂)!

Also, I want to give an extra special thank you to my bFf, Jaime, for being available on 4/24/2017. She came right over to my house when I texted her that something wasn’t right. She stayed calm and called an ambulance and my husband after it was pretty apparent that she couldn’t get me to a hospital. She rode in the ambulance with me to Baptist Hospital, and stayed at the ER and then in the surgery waiting area with my husband and family. She is an insanely busy person, so that she was available at the exact time I needed her had to have been a God-thing. She came to visit me so frequently, even though I have no memory of her visits, she came and watched OITNB with me. It scares me to think what could have happened if she weren’t available to come over. I was home alone at the time and I lost memory of everything about 20-30 minutes after getting to the hospital. I probably would have not survived if she hadn’t been able to come when she did. I loved her before, but I love her even more now! I’m eternally grateful to her quick action and level head! 😘😘😘😘😘

❤️ Jenn

A photo walk through the last two years:

Jesus and Joy

I’m going to start this with the statement that I never, NEVER, thought I’d get a tattoo. Like, never, ever, ever. I had absolutely no opposition to them, I just didn’t see myself tatted up. But, then, life happened.

My 19 year old son, Justin, met a kid in elementary school named Connor G. They became fast friends and were both excited to learn that they shared the exact same birthday. They got to be really good friends in middle school and that carried into high school. Over the years, I have watched them grow from young boys to middle schoolers to high schoolers to grown men. I’m not even sure how they’re grown men with facial hair already?!

As young boys, they would have sleepovers, watch movies, play video games, ride bikes, and whatever it is that boys get into. They played on the middle school soccer team together and then later on the high school soccer team.

When they were in 6th grade (I think – I’m sketchy on the timeline. I know the boys were in middle school.), Connor’s mom, Joy, was diagnosed with breast cancer. I’m not sure if it was the first time she’d been diagnosed with it or not though.

Joy was the first person I actually knew who had been diagnosed with breast cancer. I couldn’t imagine how Joy, her husband John, or their two young boys Connor and Noah, were feeling. At that time, it was several years before I would be diagnosed with breast cancer, so I just (naïvely) assumed that you had surgery and chemo and you’d be fine. Joy and John walked in the Oaks Day Survivor’s Walk the day before the Kentucky Derby in 2011 and 2012.

What I remember most about Joy is her smile. She just lit up when she smiled. I so wish I had known Joy much better than I did as “Connor’s mom”. Of course we talked when the boys spent the night at each other’s house, at school functions and soccer games. But, I wouldn’t say I knew her well. Still, I prayed for her all the time, that the Lord would give her success in her breast cancer journey.

Unfortunately, Joy’s cancer could not be healed on this side of heaven and God called her to Him on Saturday, September 22, 2012. I remember the great sadness I felt that she wasn’t going to be here to grow old with her husband and to watch her boys grow up. My heart hurt so badly for them and for those that knew and loved her.

Tony, Justin, and I went to visitation services a couple of nights before her funeral. We stood in line and hugged John, Noah, and Connor. Then, in a beautiful, heartfelt display of pure sportsmanship, the entire high school varsity and JV soccer teams showed up in their uniforms, giving support and love to their team member’s family. It was an incredible moment that generated a flow of tears and almost brought me to my knees. To this day, I still tear up when I think about that moment when I turned and saw the whole soccer team come in. It was truly beautiful.

Justin and I went to Joy’s funeral on Tuesday after she passed. What I remember most about the day is that it was pouring rain. I mean, it was raining SO hard and SO heavy. I remember sitting in Shelby Christian Church and thinking that the heavenly angels must be crying alongside every one of us in that church. It was a beautiful service and one that truly changed me. I distinctly remember sitting in the church, promising God and myself that I was going to take better care of my health. That I wanted to be here with and for my kids and to do so, I needed to cut out the junk food and start exercising.

Throughout my life, I’ve never really struggled with my weight so I didn’t find it necessary to exercise routinely before. But I knew it would help me with controlling my type 1 diabetes. I’d always had a perfectly acceptable A1C, but I knew I could do better.

Because of Joy, I also began being serious about performing my own monthly breast self-exams. (If you aren’t doing them, please, PLEASE, don’t let the sun go down TODAY without starting this very important and life saving task). And because of this, I found my own lump in late April, 2014.

I have always credited Joy and Jesus with the finding of my breast cancer so early. I’d had a routine mammogram in February 2014 and if not for the self-exams I was doing, if I was only relying on my routine mammograms, the earliest my cancer would have been discovered would have been February 2015, or even February 2016 (I can’t remember now if at that time they were recommended every year or every other year for my age group). You couldn’t feel my lump if I was lying on my back, only if I was sitting up. My gyn said she couldn’t even feel it when I was on the exam table.

Regardless, my point is, if I hadn’t sat through Joy’s funeral, with tears flowing and rain pouring, I probably wouldn’t have began taking my own health so seriously. And I probably wouldn’t be here today. Joy and Jesus, I’m telling you. I.am.telling.you!!!

When I received my own breast cancer diagnosis, Joy’s husband, John, brought me a huge plastic bin filled with chemo caps. Everything you could possibly imagine was in that box. Thin caps, wooly caps, scarves, bandannas. And I was so grateful for his kind heart. (And I still have that box that I need to get back to them – so embarrassing that I’ve had it this long! ☺️) I felt close to her wearing the same chemo caps that she had worn going through a similar journey.

A couple years ago I was writing the Fruits of the Spirit in my planner. I didn’t keep that planner and I wish I had. Anyway, I do NOT really like my handwriting, especially when I write in cursive. I type just about everything because my writing gets sloppy and unreadable as I write. But on this day I was actually writing something other than doctor appointments in my planner. (Lol!) I remember writing “joy” in my planner in cursive lowercase letters and somehow my planner got shifted as I took a phone call, so that I saw the word in a totally new way. And it was in that moment that I knew it would be a really cool tattoo, as a tribute to Joy, and to our journeys with a beast called “breast cancer”. What I saw as my planner sat turned upside down was two cancer ribbons in the loops of the “j” and “y”.

I thought it would be a cool tattoo to have, but I didn’t know any tattoo artists (then, anyway!) and I didn’t really know if I’d be able to actually go through with getting one (this type 1 diabetic was afraid of the needles!). Since that time, I have met a super sweet, super talented, tattoo artist (Louisa Kleinert at Bluebird Ink Beautique) and have gotten my aerola tattoos from her (they’re AMAZING! No, you can’t see them!). I asked Louisa about this “joy” tattoo idea and she was on board with however I wanted it to look, but she suggested placing it on the side of my wrist, as opposed to on the top or bottom of my wrist like I’d initially thought. Like, I am N-O-T an artist so I didn’t know if it was a terrible idea or what. But, it’s very simple, yet totally meaningful to me, personally.

So I saw Louisa today and got my first tattoo that can be seen, unlike my nipple tattoos (lol!). I selected the placement to go on my right wrist. My cancer was in the right breast and it just seemed to make more sense. I originally thought I’d do the placement on the top or bottom of my wrist but Louisa suggested the outside edge of my wrist. It’s different, but I thought long and hard about it and decided that’s what I’d do.

Joy, this is my tribute to you; a pink ribbon for your journey, and a pink ribbon for my journey. I have loved watching Connor become a man and I know you’re so proud of him and Noah. Thank you for your brave battle, and for waking me up to take better care of myself. I’ll forever be grateful to you and your family.

Jesus, this is my thank you to you for covering me with your protection through that storm. I am so grateful and thankful that I’m still here, breathing, living, fighting through another day.

I have been writing this post for a couple of weeks now and I have shed MANY tears every time I add to or edit this post. This true story is so deeply personal to me and I hold the memories close to my heart. If you take anything from this, please don’t skip out on your monthly self breast exams and mammograms. Don’t let the sun go down TODAY without making a plan for both. Both are vitally important and life-saving. Don’t not do it out of fear of “what if”. Trust me when I say that your odds are much better if you catch anything early than later. You are your own best advocate for your health. It’s easy to put everyone else in your family first, but, Mama’s, you’ve got to take care of you. Whether it’s a dental cleaning, routine physical, mental health therapy, mammograms or taking the stairs instead of the elevator, you’ve got to make yourself a priority. Because if you don’t take care of you, who will take care of them? (Yes, I know dads care take care of them too, but we all need our mama at certain points in our lives.) Please, promise yourself (or promise your kids if you need a stronger push) that YOU will take care of YOU. It’s not selfish. It’s absolutely necessary.

So this is my story of breast cancer, Jesus, and Joy. My story of how of how a woman with no risk factors or history of breast cancer, ended up fighting and beating the snot out of that pink ribbon cancer.

“The Lord has done great things for us, and we are filled with joy.” Psalm‬ ‭126:3‬ ‭NIV‬‬

“Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.”

‭‭James‬ ‭1:2‬ ‭NLT‬‬

The verses that carried me through my cancer were these words – the Lord created me (and us all) to handle the hard stuff and for me, this reminder is what got me through:

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand— when I awake, I am still with you.” Psalm‬ ‭139:13-18‬ ‭NIV‬‬

Sweet Joy (I swiped this from her Facebook page so I don’t know who took it and I hope it’s ok I am using it!)

Connor (left) and Justin (right) from 2014 (top) and 2015 (bottom). I wish I had this picture all the years they played high school soccer together.

📸: Louisa Kleinert 😘😘

Howdy, Stranger!

Well, it has been quite some time since I’ve written anything on the ol’ blog. Well, actually, it’s been quite some time since I’ve posted to the blog. I’ve had thoughts that I saved as drafts but hadn’t felt like it was time to hit the “publish” button.

So I owe you a little recap over the last few months!  Praise God, life is good!

I had my bilateral mastectomy on February 10, 2015, and I healed really well from it. My plastic surgeon would always tell me he was so happy with the way my skin recovered “especially with diabetes”.

I got back into the groove of working like a crazy woman (or was I just a crazy woman working? The world may never know!”) and before I knew it, Taylor turns 19, Tony & I celebrated our 20th anniversary (Taylor was born 2 days before our first anniversary), Taylor finished her first year of college, Justin finished his sophomore year of high school and then turned 16! 

I saw my plastic surgeon ever few weeks to have my tissue expanders filled until the end of May when they reached their capacity and surgery was scheduled to replace them with implants.  Let me tell ya, fully-filled tissue expanders are NOT comfortable.  Imagine big cantaloupe-sized rocks strapped onto your chest 24/7. They don’t move at all and are just huge.  They have to be filled bigger than the implant size so the surgeon has room to place them perfectly.  So I felt a little like Dolly Parton for a few weeks.

But on Monday, June 22nd, I checked into Baptist Hospital to trade out my expanders for implants!  It feels SO great to no have those huge expanders weighing me down!  Surgey went very well and I am recovering nicely.  I have 2 drains that I’m hoping to have removed tomorrow.

Today marks the 1 year anniversary of me going to my gyn’s office to ask about having my bladder repaired (thank you to my big ol’ babies for that gift!) and casually mentioned that I’d had this little lump for several weeks.  

As we were about to leave for a 2 week vacation, my gyn scheduled me to have a mammogram and ultrasound the Monday after we returned from vacation.  Well that was the beginning of my journey to where I am today!  I did get my bladder repair surgery (and I wish I had done it years ago!)

More blogs to come as I approach my 1 year diagnosis anniversary and the completion of my treatment.  I hope you all are taking care of your health and treating your body well!

Call your doc if you need a tune up!

Much love,

Jennifer