She Stole Our Hearts!

12184179_10153159326542694_2084714796745699141_oThe very special miracle seen here is named Ruby Eleanor Smyczek, born September 2, 2015. Sayer and I have obviously had a bit of a bumpy ride over the last few years, but we couldn’t be more happy with where it has taken us. Holding this beautiful baby has been more than worth all the struggles we’ve faced.

When we first got married in 2011, I had just finished my last chemotherapy and my body was so laden with toxic chemicals that we were under strict doctor’s orders to not attempt to start a family. It was almost a year before Dr. X was confident that I could produce a non-mutant child. Of course, few things come easily to us, and we had no luck at first, then saw several doctors and tried a number of fertility treatments, and even entered (and won!) a contest to receive a very expensive treatment free from a reproductive clinic. Last Christmas I got a big surprise when Sayer slipped the test results in the pocket of my new sweater under the tree!

A few days before Ruby arrived, we were driving from our home in Hardwick to Montpelier along a country road (almost every road in Vermont is a country road), when I slowed the car for what I thought was a very large black dog crossing the road.  As we got closer (closer than comfortable, in fact), I saw it was not a dog at all, but a black bear running in full stride, apparently late for dinner. I took it as an omen that our baby would be a strong one, while Sayer was just hoping that the sudden stop might induce the reluctant and overdue baby to finally make her appearance.  She didn’t come that day, but it was soon, so naturally I call her Little Bear.

Ruby has already been on six hiking trips since birth, including Elmore Mountain, Mt. Tom, Laraway Lookout and Mt. Wheeler. She actually climbed her first 4,000 peak in winter while still in utero, last year on Camel’s Hump. We’re hoping to get in a few more trips before the snow falls this year.

Fortunately, Sayer has been on maternity leave to stay home with Baby, but next month she’ll go back to work and I will switch to working all nights so I can stay home during the day. It won’t be easy, but doing things the easy way has never really been our style, anyway. Thanks for checking in and thanks as always to all who have supported us on our long, hard but never boring journey.

Sleepy Bear

Sleepy Bear

Mama Bear

Mama Bear

First day

First day

Posted in From Chris | 3 Comments

Happy R-Day!!

4 years ago today I ran through the kitchen at BLAH out back to answer a call from Chris’s oncologist, Dr. X. When she told me the news, I remember letting out a raw croak, followed immediately by tears. I remember  collapsing to the ground. I knew the tumor had been shrinking and the treatments were working, but I had no idea that at only 4 months post-diagnosis, would we be getting such wonderful news. Chris’s tumors were gone! Or as they say: “no sign of disease”! His MRI was clean, his blood panel looked great, and his spirits soared.

Only 4 months, but those 4 months were filled with 8 weeklong (sometimes longer than a week) inpatient high dose chemo treatments. In addition, he had a few sessions of localized radiation (cyberknife) peppered in. Following the remission announcement, he also had 3 (I think) intrathecal (through the spine) chemo treatments, just as a precaution.

rday

And now, 4 years later, here we are celebrating! In the past we have gone hiking on this day to celebrate. Unfortunately, today it was 91 degrees, super humid and major thunderstorms in the forecast. So we decided to delay the annual celebratory hike until the weather looks calmer.

It can sometimes feel very unfamiliar to me now- that feeling of complete despair and total embodiment of fear- and I am very grateful for that. I think about where we have come over these years, how we’ve been molded into this dynamic force to be reckoned with (especially when hand in hand). Or how we’ve learnt that a walk in the woods, a game of Rummy, or a beer for breakfast can be just as special as a whirlwind international travel itinerary- as long as we are together. I am starting to worry less and less and live more and more. We have so much to be thankful for.

So today, I sit back and enjoy an O’Douls Amber, a slice of carrot cake with cream cheese frosting and celebrate his remission, but also him. For he is the most resilient, bravest, determined, stubborn, cynical son of a gun I know. And I am so proud to call him my husband and father to our soon-to-be child.

Cheers to you Chris! May there be 40 more cakes!

Posted in From Sayer | 6 Comments

A New Type of Medical Imaging for the Smyczek Family!

Collectively, we have experienced multiple MRIs (with and without dye), X-rays, Endoscopies, and Bone Scans. Now, we get to add ultrasounds to the list and boy, are we enjoying them!

10/18 MRI

10/18 MRI

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4/7/2011 MRI

4/7/2011 MRI

We’ve been off the grid (blog) for quite a while, sorry for that, but life has been busy and how grateful we are for it!

We moved up north from Rhode Island to VT. I landed an incredible job at a world-class farmstead cheese producer and aging facility, Cellars at Jasper Hill. I am their onsite microbiologist with a state of the art lab at my disposal. I spend my days collecting samples of microbes (mold, bacteria and yeast) from our cheese, our aging vaults, our cows and our raw milk. I culture, identify and propagate all the while enjoying the views of the rolling green mountains from the picture window.

Chris has been working in charming Stowe as a bartender for a very old hotel/restaurant. He gets to interact with the locals, the tourists and the weekend Bostonites. I interact with ~40 Ayrshires (cows).

We have hiked a lot up here. There are so many great peaks and trails, definitely something we were missing in Rhode Island (the highest peak ~ 800ft!). We spent some time kayaking the lake we live on, as well as snowshoeing it this winter. On full days off, we’ve gone skiing a handful of times at Smuggler’s Notch- yes, you read that right- Chris has been downhill skiing on his 2 new hips and man, does he shred!

Overall, Vt has been very welcoming. A much needed retreat from the crazy few years we had previously. We are even strongly considering calling it ours permanently.

We were a bit hesitant about a change in oncologists, but have decided that we can’t worry about what may or may not happen in the future or what did happen in the past, we need to live here and now. So, Chris parted with Dr. Xavier in 2012. A very very sad day for us. Not only did we feel most comfortable and taken care of with her, but we also liked the excuse of having to go to San Diego every 6 months🙂

While in Rhode Island, Chris became a patient of an oncologist at Dana Farber- a very reputable, knowledgeable and experienced facility and staff- however, very very expensive in comparison.

Most recently, Chris has become a patient of a Hem/Onc at University of Vermont (formerly Fletcher Allen). The transitions have been fairly smooth, mostly because of his great health.

After feeling pretty settled up here, we decided that we would start seeing a fertility specialist again. We waited the 6 months after Chris’s last chemo for all that crud to get out of his system before we started “trying” for a family, however 3 years later, with a diagnosis of PCOS and ovulation occurring sporadically and sometimes 90 days apart- we sought out help. We tried all of the meds out there hoping they would get us pregnant and there were so many days when the meds made me feel like I was pregnant, however that was never the case. In VT, fertility treatments aren’t covered under insurance so any of the more invasive treatments like IVF were very far out of our budget (IVF alone is ~12,000).

In October, we entered a video contest with SHER institute- the winning family to receive a free IVF cycle. (Link to video: http://youtu.be/XBWLKyVYcFs) The first round was based off votes. Much to our surprise we were selected as finalists! How grateful we felt to have such a wonderful support system of family, friends, friends of friends and complete strangers vote for us! With a list of 50 narrowed to 10 and not feeling completely confident in a win, we made the decision to go ahead with a IUI treatment our specialist suggested. At $1000 and no surgery involved, we headed off to the Doctor’s Office. One week later, we received word we were one of the 3! couples chosen for the cycles! Holy cow! Overcome with emotion and appreciation.

Christmas rolled around and I felt “normal”. So we celebrated the fact that we were both HEALTHY, HAPPY, with family and able to attempt a pregnancy with the IVF cycle at some point in the near future.

The day after Christmas, I got the phone call. Blood work came back, I was pregnant! A few weeks already! I put down the beer, my last one for a long while, and ran out to get a confirmation blood test. I also picked up an OTC at home pregnancy test. Chris wasn’t able to get to my parents in CT until the day after Christmas and he didn’t know yet. So while he was driving down from VT, I was neatly wrapping the pregnancy test and placing it with his pile of presents under the tree…

And here we are, 14 weeks pregnant, loving every minute of this pregnancy, even the FEW (only) times I dealt with some sickness. I especially enjoy the ultrasounds! This imaging so new to me, where instead of seeing a tumor, or a bad femoral head (hip), I get to see my baby dancing around in my belly. And this Baby has some serious moves! Baby Smyczek is set to make it’s debut August 26

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We are so very happy, we are over the moon with joy- off floating in space. Looking so forward to our new adventure. We can’t wait to climb mountains with this sweet child. And of course we are overcome with appreciation, gratitude and the feeling of moving forward. I’ve stopped referring to events as “starting fresh” because it was our past that has shaped where we are now. And now, we are feeling joyous!

Much love, Sayer (Chris and Baby Smyczek)

SAYERBABY

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Good things come in threes

Today marks three years in remission for this lucky guy. I’ve made a habit of having a little celebration each year on or near the anniversary. The first year Sayer and I climbed Mt. Whitney to celebrate, and I was so happy just to be alive and feeling strong again. Last year, it was a big day because being cancer free for two years meant it was a lot more likely I would stay that way. This year is a little quieter and more contemplative, as I’m thinking ,more about the future and how to make the best of this second chance at life. Sayer and I have been enjoying our time in Vermont so far and we’re thinking more about settling down, maybe buying a house someday and, well, who knows what else the future may hold.
In other news, I recently had the opportunity to participate in a great project aimed at helping others struck with CNS lymphoma. Several CNSL surviviors wrote down their stories and they’ve been complied into an e-book. I often wished in the early days of trying to understand and accept my diagnosis that I could draw on the experience of someone who had gone through it before. I think this electronic book will provide just such a resource for those that need it. I’m trying to post the book here on the site, but if you or someone you know would like to read it, just send me a note and I’ll be happy to e-mail it to you.
Central_Nervous_System_Lymphoma_-_Survivors_&_Caregivers_Stories (2)

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Finding the strength: a caregiver’s perspective

I found out recently that strangers, specifically other people facing similar battles, have not only been reading this blog, but have found it helpful.

So, tonight, on the eve of another MRI, I thought that I would update the blog and also write a post highlighting the often unseen battle the caregiver goes through. I write this not to glorify myself or belittle my husbands battle, but to share the personal struggle that I encountered and the effective tools and outlets I utilized. My hope is that all the wives’, husbands’, significant others, parents and children of a cancer patient (survivor!!) can find something useful or at least familiar to them in this post.

Most importantly, you are not alone. At times, this was probably the worst thing I felt-loneliness. Living 3000 miles away from our family and friends (although we have since made some of our best friendships in CA), it is very easy to feel isolated and alone- an island surrounded with rough seas and fog. I felt the weight of the world on my shoulders. My mom told me the day we found out about the tumors “Sayer, this will be the greatest and hardest role you will have ever performed”. I was a theatre major in my undergrad. Mom advised me that in front of Chris, I would have to be the Spartan; stone faced, strong and positive. This was a very hard role to play considering the circumstances. People said to me, often, “how do you do it?” and my response was always the same- “what is the other option?”. I just did it, I was able to take my heart off my sleeve and evoke an extraordinary level of confidence and positivity when ever I was with or talking to Chris. However, there were times when I left the hospital so emotionally and physically exhausted all I could think about was a giant glass of red wine when I got home, but on those same nights, I found myself either falling asleep before my shoes were off or else feeling too guilty about drinking wine and relaxing at home while Chris was in the hospital room hooked up to a bag of chemo. You just do it, you cut your hair, you shave their head (before the chemo gets it) and you support them, because you know had the roles been reversed, they would do the same for you. It’s what you do when you love someone. And you surround yourself with people that you can lean on and be vulnerable too.

Guilt was another emotion I had to overcome. Anyone who knows Chris knows he is one hell of a lucky guy- escaping eminent danger far too many times. He is also someone who has been dealt far too many bad hands. Although, I am sure, even if he had had things “easier” previously, I would’ve still felt guilt. You will feel guilt too- over the glass of wine, the slice of pizza, the ease of crawling into your own bed, seeing your dog everyday. It’s natural and it’s understandable, but the guilt should not make you loathe those everyday pleasures. It sounds terrible, but I actually got through some of the guilt I was feeling through jealousy of others. I told myself not too feel and by allowing the self-pity party, occasionally, appropriately and within reason- I reminded myself that it wasn’t a cake walk for me either.

But by far, the worse feeling I felt, was helplessness, but that did not stop me from reading every piece of literature ever written on PCNSL and other related issues. I obsessed with articles, blogs, forums, message boards, etc, etc. If I could learn everything there was too know about this horrible disease, the treatment, the hospital, the doctors, the diet, the meds- then for sure I could be helpful in some way. But no matter how much I read, it didn’t get easier, in fact even just 3 years ago, the literature that was out there was very few and far between and extremely grim (one of the main reasons we started this blog). I couldn’t make the man in the bed next to him stop snoring, I couldn’t make the IV alarm stop beeping, I couldn’t make his skin stop bruising, or his face stop swelling, or his head stop hurting. I know now that my singing, my hand holding, my head rubbing, my snack giving and my hospital bed sharing cuddles got him through some of his darkest days- I couldn’t see that back then.

It is a hard role. It is a journey and you will get through it and you will be a better person for it and a better lover or parent, or son or friend because of it. And those terrible feelings will be replaced with inner strength, appreciation and gratitude.

A friend of ours gave Chris a card in the hospital that read “only in the storm can you see the art of the real sailor”, looking back now I know there was more than one sailor.

Posted in From Sayer | 5 Comments

Another Year Older

Hard to believe I’ve made it through another year, but I just went to the Dana-Farber Cancer Institute in Boston for an MRI and exam, and I am still cancer free. It hasn’t been the easiest year – I’ve had two total hip replacement surgeries – but I’m back on my feet and feeling strong. The hip issues are common in survivors of central nervous system lymphoma, they are a side effect of one of the drugs used to shrink the tumors. My new joints are made of a titanium alloy, ceramics and plastics, and if all goes well they will keep me moving well for another twenty years.

Speaking of moving, Sayer and I are planning another relocation, this time up in northern New England. But before we settle in there, we are taking our long-delayed honeymoon, to Andalusia, in southern Spain, with a side trip to Morocco.  We’re flying into Madrid, then traveling  through Granada, Seville, Ronda, Jerez, Cordoba, Gibraltar and Tangier. It will be out first trip overseas together and we’re pretty excited.

 

 

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Two years later: survivorship issues

It was two years ago today that I found out about the tumor. I don’t really remember that day or much of that week. But over the next few months I thought of myself as a cancer patient, then as being in remission, then of being in recovery from treatment. Eventually I started to see myself as someone who used to have cancer. I went back to work, started to do the things i enjoyed again, started to look and feel like my old self. I also got on with life. I got married, moved across the country, found a new job.

I knew that my body had changed from the illness and the drugs. I had gained weight but lost strength, and my feet and legs always hurt. Recently I found out that my legs weren’t just tired and sore. I have a condition called ‘avascular necrosis’ in both my hips, but it’s much worse in the right hip. It’s linked with using a class of drugs called corticosteroids, which I took to reduce swelling in my brain. The right hip is damaged to the point that it’s hard for me to walk without a cane or crutches.

Last month I went to California to see Dr. X for a check up and she was very worried to see me using the cane – I had used one to help with balance when I still had the tumor. She was very relieved that I ‘only’ had a collapsed bone in my hip! She called it a ‘survivorship issue.’

So right now I’m walking on crutches to try to keep weight off the worse hip and I’m going to have a surgery called ‘core decompression,’ in which the surgeon drills holes into my femur in the hopes of relieving pressure and encouraging new blood flow to the damaged part of the bone. If that doesn’t work, the only remaining option will be a total hip replacement.

I’ll get through this issue eventually, but right now I’m feeling a little bitter about having another health problem to deal with. The best part about surviving cancer is not being dead, but the rest of it isn’t always fun. My boss took me off the work schedule because he saw me using crutches at work (which I think is pretty unfair, but that’s a separate topic.) Now I’m unemployed and hobbling around the house until I get my surgery.

Despite all that, I’m feeling pretty happy about being two years removed from my diagnosis. Each month that passes makes it more likely that I will be forever free from lymphoma. And besides the sore hip, I feel pretty good. I’m starting to settle in to my new home in Rhode Island, and looking forward to summer when Sayer and I can slip our kayaks into the Atlantic.

Thanks for checking in.

Chris

 

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