mull words // 33 (& an MS update)

Thanks to dear Meg for these words today. 

It has been a while since I provided any sort of update on Jake's MS. Which is a good thing, ya' know? This falls firmly in the camp of "no news is good news." Alas, January has gotten 2016 off to a tumultuous start on this front and I'm grateful for the reminder of the words above.

The long and short of it is that an MRI at the tippity-top of the month reminded us that stability is not guaranteed and things change suddenly. Rapidly increasing symptoms a few weeks later slapped us in the back of the head and said "See? I told ya'." But, an emergency round of steroids infused into Jake's veins took the wind out of MS's sails and whispered "but don't freak out, there's never any reason to lose yourself in fear, just keep loving."

So, here we are, seemingly stable once again. Another MRI will happen at about the same time this new baby is anticipated to arrive and we will have a glorious distraction from whatever decisions and bridges we need to cross then. Not now.

An MS post filled with smooch-y pictures, because smooching is the best medicine. And laughing too, of course.

an ms update

Alice is asleep on my lap. Jake is nodding nearby. The dogs just enjoyed a brief walk in perfect jaunting weather- just cool enough to justify putting a sweet knit hat on the baby. Our lives feel calm and warm in this moment. And I feel grateful. These are the moments that this tumultuous year is hammering and needling into focus. These are the moments that are life-giving. Renewing. Restorative. Focus on these.

Jake and I have often said that we wish he didn't need to have monthly infusions. Yet, we have appreciated the check-in every four weeks- the opportunity to sit together for a couple hours, chat with kind nurses, and be subtly confronted with our lack of control over, well, everything. This has been our routine for three and a half years. So, though we've wanted and prayed for the infusions to come to an end, it seemed odd and unreal to leave Saint Elizabeth's yesterday after his last one. 

Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. (Romans 8:26)

The infusions are over and we're onto a new treatment. Jake's MRI remains stable- he's due for another as soon as we can finagle the insurance coverage- but his blood work has suddenly shifted. In the next couple months he will remain at a high risk of a fatal brain infection revealed in his blood- a side effect of those monthly infusions. In the meantime we'll embark on the task of navigating the side effects of a new drug. Appointments, tests, phone calls and letters from insurance companies, financial aid applications, new nurses names to commit to memory and phone numbers to save, slips of paper with scrawled details I want to research when I have a chance. 

Bouncing a baby on my hip, standing in Jake's neurologist's office, tears in my eyes. 

We've come a distance from Jake's diagnosis four and a half years ago- dating, living in rented spaces, working together at the YMCA. We often laugh about one of those very first nurses telling us that our children would be beautiful and they would have Jake's eyes. I can feel the dim-lit hospital room, the curtain drawn around Jake's Jamaican hospital roommate, and see her taking Jake's vitals.

And now here we are, our blue-eyed baby girl asleep on my lap. The nurse was right- she is beautiful. And we will be okay. And we'll be better than okay if we can take these quiet moments and squeeze the glory out of them- drain them bone-dry of every renewing and restorative ounce. 

Jake's last infusion- 15 Sept 2014

I want to revel in the love I have for these people.

an update

J&K circa 2010

Just the other day I was sharing with family members the experience of finding out Jake has multiple sclerosis. It was surreal, as you can imagine, but the surreality was indulged by the fact that the diagnosing doctor had absolutely no bedside manner. After three days in the hospital, and no answers, I had to ask him what Jake had been treated for. He chuckled and replied, "oh! he has MS!" Just like that.

It seems that Lent will always remind me of that time- that crazy week leading up to Easter in 2010- when Jake was losing his ability to see and speak, and then, sitting at my desk at work, when he called me from an ambulance headed to Boston. On Good Friday Jake was officially diagnosed and released from the hospital. We made it to church for the after-service potluck.

Jake had his monthly treatment yesterday, and we recalled how I had slept in a reclining chair next to his hospital bed, and how he enjoyed ordering food off the cafeteria menu that week. My husband, always the humorist, commented that he wouldn't mind another week spent in a hospital gown. He really did like the food.

Despite 6 hours spent at the hospital yesterday, mostly waiting for one appointment or another, I'm often reminded of how very lucky we are. Waiting rooms are full of prime thinking space, and I felt thankful. Jake is a case the doctors and nurses love to see. I'm convinced Jake is their favorite patient. I'm certainly biased, but I also can't help but acknowledge that the world we enter for Jake's monthly treatment is not an easy one. Those nurses are saints, and Jake's neurologist treats folks who would beg and pray for Jake's symptoms. We don't know what manifestations of this disease are to come, but we know that, no matter what, we have much to be thankful for now. And, you know what? I bet if we are willing to look hard enough, we always will.

Also, the nurse gave us graham crackers and ginger ale as a snack during his infusion. SO MUCH TO BE THANKFUL FOR!

just a year

We have my husband's first treatment of 2012 today. Next month he's due for his 6-month everything- MRI, full blood work, check in with the neurologist. Its always overwhelming, and a little scary, but I'm honestly excited for what 2012 is going to bring on the MS front. I'm excited for the books Jake is reading and the hope they're giving him for gaining some control over the disease. I'm excited for the progress of MS treatments. I'm excited for our new year.

I do think today is the day when saying "Happy New Year" is no longer appropriate though. Its been over a week now. We're all back to work. I'm buying books for my grad classes, and auditions are this weekend for my next couple shows. It's not a new year anymore. Its just a year.

So, Happy Monday instead! And happy whatever-new-things-happen-today.

[photo credit: an etsy shop i love]

better together

Jake had a treatment yesterday. This entails an afternoon off from work, a commute into Boston, a few hours for the actual infusion, and then a commute back to the North Shore. Its a pretty straightforward endeavor every four weeks, and it has become part of our routine. We know the staff at the hospital's complimentary valet service. We know the receptionists and the nurses on the hematology/oncology floor. We know the drill. 

There are months when its a struggle. Times when its difficult to coordinate for us both to make it to the infusion appointment. I can't do that night because of class. That afternoon I really can't miss rehearsal. We have plans with so-and-so that day- we can reschedule if we need to (again). But we make it a priority. The BEING TOGETHER is non-negotiable. We don't have much control in the whole scheme of Jake's MS. Neither of us saw this disease in our life plan. We certainly didn't choose for the first line of treatment to fail. We'd, of course, prefer for the treatment to be at a local hospital rather than 45 minutes away. We have no choice with any of it. But we can choose to be in this together. 

Every step of the way.

I know Jake would be fine without me there with him every four weeks. There's not really much I can do to ease that process for him. No matter what, its his arm getting poked and his brain on the line. Just being with him is what I can do. Helping talk to the doctors. Asking questions. Acting as a voice for him when he is overwhelmed. 

So, I was blessed by a silly, flippant thing yesterday. A doctor came to check in on Jake during the infusion. This happens every time, and always includes some chatting about upcoming holidays or recent news. This time, the doctor asked if he could take a picture of Jake for the charts. For meetings and conferences, they like having a photo to help everyone get on the same page about who's treatment is being discussed. "Sure," Jake said. No big deal. Then the doctor asked if I wanted to be in it. "Oh, I don't think so. You don't need me in it, do you?" And here's the blessing- the doctor's response was something to the effect of "Actually, it might be helpful. You're always together. We never see you separately, so it would help some people recognize Jake."

And for the first time, I realize there are already people who have never known us apart.

Love is the answer,

At least for most of the questions in my heart

Like why are we here? And where do we go?

And how come it's so hard?

It's not always easy and

Sometimes life can be deceiving

I'll tell you one thing, it's always better when we're together.

a good patient

Jake was wearing his grumpy pants as we headed into Boston for his monthly treatment yesterday. He'd already had one leg in 'em as we cooked dinner on Sunday night. We all get grumpy sometimes. 

The thing is, we've gotten pretty good at integrating the whole MS thing into our lives. We use the treatment time as time together, and enjoy chatting with our nurse buddy Suzanne. We like our monthly "date nights" to the Publick House in Brookline because dinner in the city makes more sense than driving home during rush hour. 

But sometimes, there is work to be done and driving busy roads gives you a headache, and why do we have to do this? badgers Jake's brain. He didn't want to get poked and didn't want to answer questions and he was hungry, darn it.

And I'm totally on his side when he's grumpy over MS. The guy never gets grumpy over it! He's a champ, making jokes with all the doctors and nurses, never flinching at all the pokes and prods. He hates florescent lights and sterile smells, and goodness knows he usually can't bear to share how he's actually feeling. He's a fixer and a helper. He loves being useful for people. But then MS came along and forced him to be helped. To be listened to. And no matter how much I love him and stand by him, no matter how committed I am to being at every doctors appointment and treatment, it's not ME with MS. Its not my body being treated, and its not my mind covered in lesions. When I think of that, I cannot help but be overwhelmed with admiration for this strong, brave, passionate man. He is a good soul, my friends. A good, brave, loving soul.

Like I said, grumpy pants was hungry. The nurse asked if he needed anything. Flippantly, jokingly, he said "yeah, you have any food?" And we laughed, expecting nothing. Instead of nothing, she quickly affirmed that in fact she did have food for him. Would cream of broccoli soup be ok? 

Seriously? Seriously God? You've got a sense of humor. One of Jake's favorite soups is cream of broccoli. 

Broccoli soup, chips, crackers, and two chocolate chip cookies later, my man was free of his grumpy pants. And I was giggling with delight, taking gleeful photos of my husband eating soup. Sometimes, it doesn't take much to make life a little more do-able.

take that ms

Last week I wrote about how ms is mean. Well, we kicked MS in the shins. Hiii-yah! (That's the sound I make when I kick MS in the shins...obviously.) Yesterday we had our dreaded appointment with husband's neurologist. The doctor is not dreaded- he's a very nice man- but as I wrote before, our last 6-month appointment lead to a slew of overwhelming decisions. I dreaded the potential of another bad MRI, another failed treatment, another routine to learn.

WELL: our doctor said yesterday, while sitting behind his big, wooden desk and glancing up from images of my husband's brain, "it's all good." NO active enhancing lesions. NO negative signs in the blood work. NO irregularities in the physical exam. Praise the LORD! There may be a new lesion on husband's right temporal lobe, but our doctor and the radiologist are hashing that one out. I'm on our doctor's side- its not there; its totally not there. 

There are few things better than hearing good news about the state of your husband's central nervous system. My husband's BRAIN is doing FABULOUSLY. How awesome is that??

Neurologist-bearer-of-good-news-man also gave us a funny metaphor with which to explain what MS is/does. He said your brain is like a college campus, full of college students. Now, most of those students go to class, study, and generally do what they're suppose to, but when you have MS, every now and then a bunch of the students get drunk and trash the place. Stupid drunk college students. Watch out, I'm getting really good at my hiii-yah kick to the shins.

ms is mean

A few posts ago I mentioned a prayer request- that husband and I would be spending a day at the hospital soon, and that I've been feeling anxious about the whole darn thing. Well, yesterday was that day. First thing- no bad news. Second thing- add yet to the end of that last sentence. No news, is the full truth. Turns out we have to head back into Boston next Monday to have more tests and find out the "news." 

I put quotes there because I'm hoping there ISN'T any news. I want the answers to be: looks good, keep doing what you're doing! Here's the deal: MS is mean. Husband has multiple sclerosis, an autoimmune disease that affects his brain and spinal cord. Basically, his immune system eats his brain. We joke that God planned for Jake to have such a big head because God knew this mean-MS thing was going to happen. We laugh that Jake's big head and big brain means that, really, his body is just getting rid of extra weight when its eating up little bits of his brain. The reality is though that there's a colorful variety of lesions, black holes, and cysts all over the map of my husband's thinking-machine. And thats terrifying. 

I cried last night when husband and I finally climbed into bed. We'd been in the hospital for his 6-month MRI, then blood work, then his monthly treatment. There was suppose to be a doctor's appointment in there too, but the timing of everything didn't work out. No doctor's appointment meant no answers. At the last 6-month mark, we found out the treatment Jake was on wasn't working. We found out that Jake's MS is so darn mean that any of the the front line of treatments wouldn't work and our options were: tysabri or chemo. Seriously? Chemo? We're babies to be faced with the word "chemo." We went with tysabri because we trust our big-city-specialist neurologist, and because its not chemo. And tysabri HAS made husband feel LEAPS and BOUNDS better. We just know his brain will look shiny and new on that MRI he had yesterday. But now we won't know until next Monday. And if it doesn't look shiny and new? We're back to the drawing board and what...chemo? Bah. Let's not think about it.

Let's think about how absolutely wonderful husband is and how thankful I am for him. 

i love him so, so much