I literally have a screw loose

4+ years later, I’m finally writing about my latest health issue relating to my brain surgery. In June 2020, my parents had all 3 kids at their house on Lake Norman for about 10 days after school ended. A couple days into that visit, I started getting swelling and pain at the end of my surgery scar. I was able to get an appointment with a neurosurgeon in Potomac at a Johns Hopkins satellite office since the director of neurosurgery at JH Hospital Baltimore who performed my surgery went to start a department in Italy about 2 years after my craniotomy. This new surgeon ordered a CT scan and MRI.

I went to see him after he got the results and it turns out that one of the screws they used to attach the plate at the “bone flap” came loose. That’s good news because it’s not something with my brain. The bad news is he can’t just remove the screws and plate in a simple procedure because this piece of bone they took out and put back hasn’t fully fused with the rest of my skull. He would need to take out the old plate & screw to replace it which would require opening up my scalp. He said with the bone not being fully fused, it’s a direct pathway to my brain that would carry risk of infection from the surgery itself. Plus with the coronavirus raging, going into the hospital for scalp/skull surgery wasn’t really a good idea. He said the pain and swelling was relatively new and my skin is still intact so we could consider doing the replacement surgery down the line if I have chronic pain. Thankfully after about 10 more days of pain, using ice, and taking ibuprofen, it went away. I still sometimes get dull pain but it’s nothing like that first episode.

 

It's amazing how much your scalp moves even with just expressions. I took that for granted before this. I guess I make a certain kind of expression when I talk about politics because that would irritate the screw and make it throb. Eleanor especially likes to say that my loose screw hurts when I talk about Trump. So not only do I have my cancer card but I can say literally I have a screw loose. So it's good news for now. No recurrence showed on the MRI. I will probably need another surgery to replace the plate and screws but that can wait until it's more urgent.

Anyway.... STILL ALIVE!

Positive update on my disease

I started this blog in May 2013 for two reasons.  The first was to explain how I was feeling, mentally and physically, not only for myself but to update friends and family.  The other reason was because I couldn't find many blogs/stories about young adults with my disease, especially ones that had good responses to treatments or outcomes.  Therefore, I was hoping I would be a positive example to other young adults looking for someone who has survived brain cancer and is thriving.

I had a follow-up MRI this month that showed no evidence of disease (NED).  I have had NED since December 2013 so this year will be five years.  5 years since diagnosis on June 4th and 5 years since my last treatment on December 4th.  After everything I've been through, I feel blessed to be alive. 

If you've just been diagnosed with brain cancer or astrocytoma specifically, know that it is possible to beat it.  I still don't fully know whether the cancer will come back but I'm hopeful it never will so I can grow old with the love of my life and see our children meet all the lifetime milestones I hope for them.

Rest peacefully, my friend

I’ve been struggling with how to write this post. One of my good friends passed away on Friday. Needa was an amazing person and she is a beautiful soul. To know her is to love her. She was the kind of person you could trust and become friends with the first time you meet her.  Like another friend said, people tend to exaggerate a person's good qualities when they die but with Needa, she had those amazing qualities 100% of the time during her life.

Needa was the sweetest and kindest person you could ever meet. I feel extremely lucky to have crossed paths with her and blessed to call her my friend. She was kind to everyone she met and she was very intuitive about people’s personalities and intentions.

Needa is known for protecting her friends fiercely. I’m not exaggerating when I say she saved me from being sexually assaulted. If she hadn’t been there with and for me, I’m convinced my #metoo experience would have been far worse.

Always wanting to put others at ease, she was wonderfully funny and had a great sense of humor. I was able to see the real her without the funny girl facade at our young adults with cancer support group at Hope Connections. She was sensitive and vulnerable. I loved seeing that side of her and feel like I got to know her true self.  She let me know during her final weeks how much she was suffering and how scared she was.  I wish I could have helped her more.

"Bill Nye the fuckin' science guy!" ~Needa

We were close and reciprocated flirty text messages knowing full well neither of us were “batting for the other team” if you know what I mean. She was my bae and I was her boo. I was always able to make her smile and calm down even in her lowest moments.

She means more to me than I can even express with these words.

To my bae, Needa.  May you find some relief from your pain and make the angels laugh in heaven.  I love you.  We'll meet again in the next life.

3 year survivor!

3 years ago, I woke up sick to my stomach thinking about the MRI I had scheduled for later in the morning.  It was Tuesday, June 4th.  I know my body and I knew something was wrong. I had MRIs in the past so I know how long it is supposed to take.  When I was in the machine, it was taking a lot longer than I remembered.  When I saw the neurologist in the mirror standing in the booth, it confirmed what I knew already; they see something on the scan.

Dr. E took Charles and I directly back to his office.  Without much bedside manner, he told us I have a glioma.  He gave us the name of a surgeon with George Washington University Medical Center.  The soonest he could see me was Friday.

One day after surgery.
I felt like a rockstar! Psych!

Fortunately, I was given contact information for the personal nurse of the Director of Neurosurgery at Johns Hopkins Brain Tumor Center in Baltimore.  I was able to go the next morning (Wednesday) to Baltimore to meet him for a private consult.  He is the kindest, most empathetic physician I've ever met.  He explained how the craniotomy would be done and the chances of getting the majority of the tumor.

Mom, Charles, and I went to meet the GW surgeon on Friday.  He did not impress us.  He seemed very underwhelmed, like he did this all the time and it was no big deal.  But for each patient, it IS a big deal.

So I was able to make a date with Dr. O at Hopkins for the following Wednesday.  Unfortunately they had to reschedule for the following week.  I had to deal with my terrible migraines for another 10 days.  On June 18th (Tuesday), I went to Hopkins to get my pre-surgery MRI.  I had "life savor" stickers on my head overnight.  Mom, Dad, Charles and I stayed at a nearby hotel for the night since I had to be at the hospital at the crack of dawn.  They took me in pretty much right away.  I woke up over 6 hours later in the neurology ICU.  My surgeon was amazing and said he took out 99% of the tumor.

After my hospital stay, we waited several weeks for pathology.  The pathology department was having trouble classifying my tumor.  Eventually they settled on grade 3 astrocyma due to "some anaplastic cells" even though most of it was considered benign.

September 2013

After a lot of consultations with different doctors and the brain tumor board at Hopkins discussing my case twice, we decided I would do radiation and chemotherapy even though there was no evidence of the tumor on the MRI.  I did 42 straights of chemo and every weekday for 6 weeks.  I did 2 rounds of "maintenance chemo" but each time gave me new symptoms.

After researching and finding out the maintenance chemo shows no evidence of increasing length until recurrance, I decided to stop doing it.  It was the best choice for me and my family.  I took my last chemo pill on December 4th.  I have had no evidence of disease (NED) since then.

So today, I am a 3 year cancer survivor and "cancer free" for exactly 2 and a half years.   I couldn't have done it without the support of my family, friends, coworkers, and church family.  You all have no idea how grateful I am!  Thank you for making a difficult 3 years survivable.

Today we had our family pictures taken and went out to lunch at Le Madeline:

New year update

My MRI from Wednesday has no evidence of disease (NED)!  Woot woot!

Next check up will be in May, every 4 months for a year or two. Then maybe 6 months. But no longer than 6 months between scans in the future. As long as I continue to have NED scans, I'm happy with every 6 months.

"It's not a tumor."

http://youtu.be/6ucfgdFrlho

Quarterly update

Good news.  My MRI from this morning is stable.  Still no evidence of disease (NED)!  I'm on a roll.  My follow up with the oncologist is Friday but I don't expect to hear anything I don't already know.

Hopefully I can just copy and paste this in December! Now back to your regularly scheduled programming.

My "little stuff" post

I need to write some more before I loose the memories of the little stuff, the in-between times. My dumb cancer/chemo brain is already loosing things. I got really upset last night because I felt these things were already flying out of my mind and it made me so sad, frustrate, and mad. Simple words or sentences should be enough to jog my memory later.

-Doing a group jump picture at the Welcome to Utah sign.
-11 female cancer survivors (plus 10 other people) in the same lodge for almost a week and no petty fights or drama.
-Choosing rooms from the hallway of rooms that each had 3 bunks and a queen bed. (Letting Ultra have the queen and I took a quiet bottom bunk in the corner, "my cave").
-Ultra and I falling asleep the first night with the light on so Alcina could come in and get ready.
-Alcina thinking Ultra was still up and leaving her headlamp on the outside door handle.
-Having the coffee run out frequently and not having a quick Keurig to brew.
-"Fancy water" always available in a big pitcher with lemon/lime slices and mint
-Making lunches every morning to pack in the cooler; variety of breads, meats, spreads (including homemade Chamomile nut butters), fresh veggies, energy bars, natural fruit leather, and left overs. My absolute favorite was the left over breaded chicken from the previous night's dinner put on yummy sour dough bread.
-Trying every single type of dish that AJ and Chamomile put in front of us, even if it was just one bite. I was being adventurous and proving to myself that I will try ALL of it. Almost of all of it was extremely good and I had 2nds and sometimes 3rds every night.
-Watching Chamomile make nut butters and strawberry ice cream with her industrial grade blender/squasher thing.
-Remembering how helpful all the staff and camp moms were, working as a team to clean up meals and make sure everyone was feeling at home.
-That first climbing morning when the campers wiped out Bandcamps snack bag in the first 15 minutes.
-Having Piranha pass on the sunshine award to me.
-Switching awards with Cilantro so I could present the "On rock award" to Strawberry.
-Watching how much it meant to Patch to have Cilantro give him the sunshine award.
-Dance party/stretching every morning.
-Sitting out on the back porch with tea or coffee and just looking over the pond, hear the sounds of nature, cuddle up on a rocking chair in the sun, talk with Mmmbop or not talk with Rebel.
-Bean sack/love sack/bean bag/love bag/etc, whatever you want to call that giant bag chair that was like laying on a cloud. Hearing Bullseye say "BAG, BAAAAG, BAYG."
-Acting out spirit animals; Yak, Jennifer Lawrence, Tequila, Panda, etc. Ama D thinking Jennifer Lawrence was someone's real name instead of spirit animal. Choosing a white barn owl (Hedwig) for my spirit animal.
-The awesome reclaimed wood store in town. Sending postcards to the kids that didn't get there until a few days after I got home. Buying a bunch of Moab gear in the tourist shop. Being so glad I got a rain coat that day.
-Getting Charles a "wish box" and leather bracelet. Getting a bag of pretty polished stones for each of the kids. Having the kids loose them all within 3 days.
-Using the big water bottle I bought for the rest of the trip, getting to cover it with the Moab stickers, using here at home.
-Thinking about my trip and friends every time I use the Moab mug.
-Hollywood trading 3 high school nicknames for his original FD one, including my HS nickname "Bootie."
-One of the two bathroom stall doors being locked with no one in it and the fact that it was 100% not reachable; surrounded completely by walls and a door with a full frame made of sturdy wood.
-Wearing my buff over my mouth and sometimes eyes at the camp fires.
-One of the showers having really high water pressure and one having no water pressure at all.
-Dance party on the porch overlooking the Colorado River at Colin's Red Cliffs Lodge with Patch, Bandcamp, Mmmbop, and Standby.
-Having a long introspective moment at the beach, thinking about my cancer experience, myself, and my life. Throwing away my "bad rock" and still keeping my "good rock" on my wardrobe now. Being so touched that I was crying. Hugging Mama Flub and crying with her. I know I'll never forget that moment or how I felt during that whole half hour or so.
-The Baci ceremony at the base of Looking Glass Rock, still wearing the threads around my wrist that symbolizes good luck and protection.
-The impromptu beaded Baci that Piranha gave us and still having that on my wrist today too.
-Almost landing on Ultra's head because I was flying down the repel (on purpose) on graduation day.
-Taking advantage of any bathroom-like place so I didn't have to pee in a bush by the river.
-The fact that cancer patients have NO problem talking about bowl movements or lack thereof.
-Watching the news to see if my friends' flights would be able to land in their connecting cities during a big severe weather swath.
-The guys in the row in front of me having their headphones so loud that Piranha, sitting in the row behind me, could tell which songs they were playing.
-Getting a bacon, egg, and cheese bagel from Dunkin' Donuts at the airport before grabbing my bag to go home.
-Going outside and being hit by the swamp that is hot, muggy DC.
-Staying up really late to tell Charles all about my trip.
-Going out for a special dinner Sunday as a welcome-home-mom celebration.

I will probably update this more as things come back to me. This is a good start though.

More Climbing Pictures

Blue Steel first climb first day

Blue Steel second climb first day

Purple Steel repelling on day 2

Mama Flub and Steel in matching FD shirts

Lookout beach - Colorado River

Graduation Day cuddle puddle

Mama and Blue Steel on the first leg of the graduation climb

Repelling down the 250 ft drop

Cilantro, Boots, Steel, and Standby as the sun came out

Boots and Steel huddling for warmth

Graduation Group Crush picture

Group Crush at the big arch in Arches National Park

Group Crush at Balancing Rock, Arches National Park

Group Crush in Arches National Park

Le Sal mountain range

Arches National Park

Dead Horse Point State Park

Looking Glass Rock, Moab, Utah - graduation day climb

Moab, Utah; one of the best weeks of my life

"First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same."

I was accepted into the Moab, Utah week long rock climbing trip for May 2015. I've been rock climbing indoors for about half a year but outdoor rock climbing is very different. I had an idea of what I thought I would get from this experience but I had no idea that it would meet and greatly exceed my expectations. I'm not quite sure how to put my experience into words in a way that will do it justice but I'll try anyway.

First, I'll say I'm going to tell MY story but I'll be careful not to include any personal information of anyone else. First Descents has a wonderful tradition of giving everyone nicknames on the first day of camp. It's a way to help people live in the moment. You don't have to think about who you were before camp or who you will be after. You are you for that week and the new nickname helps solidify that. I don't even know anyone's real name. They are always <insert nickname here> to me. They are even <insert nickname here> on my phone for their contact info. 

Packing was exciting like it usually is for any trip, especially one you've been looking forward to for several months. I put in ALL of my good work out clothes, some of which I had bought specifically for this trip and the Race for Hope 5k the previous weekend. I planned to check a bag so I didn't have to deal with the nonsense of 3 oz bottles and not being able to bring my sharp objects.

The view from our porch; best coffee spot ever.

There was a delay in my layover at Denver, severe weather in other parts of the country. It was actually nice to be in the airport longer as I got to meet 5 other campers who were also on the same delayed flight. Bullseye (F) was my first FD friend! She found me sitting at a nearby gate charging my phone that had completely died. Denver has very very few outlets for being such a major hub. After that, we met up with Ultra (F), Boots (F), Cilantro (F), and Rebel (F) to have some food in an airport restaurant. I sat outside the restaurant (at another outlet) to facetime home since it was mother's day. My family had a wonderful make-up mother's day trip to Great Falls park the day before but Grace especially wanted a call from me on Sunday. All the while, I'm getting group texts from other campers and the two staff members from FD.

After boarding the 4-seat-across plane, it was a short flight to Grand Junction. Our little group of 6 wandered into the little airport. We made our way down to the baggage claim and were greeted by the most energetic man I've ever met, Patch. He bounded up and gave everyone a hug ("I'm a hugger!"). Bandcamp and Truth (camp moms) were there ready to help with bags or showing the way to the bathroom. Mmmbop (or Ballsy? j/k) (F) had gotten there earlier in the day. We met up with one other camper, Piranha (F), and made our way to the vans. 3 other participants were late but would end up making it later that night. Woot Woot for Strawberry (F), Alcina (F), and Standby (F). Guess how Standby got her nickname ;)

We drove about 2.5 hours across the border of Colorado and Utah. We took the scenic route and it had red rock bluffs and snow capped mountains like I've never seen before! We took a picture of all of us jumping at the Welcome to Utah sign. We passed through the small town of Moab (which took about 10 minutes total). As we got closer to the Hidden Oaks Lodge, our private view of the La Sal mountain range came into view. The long dirt roads took us back to the house.

I heard tell this lodge used to be a drug rehab facility which makes sense, seeing as how it's a 15 minute drive to the town and there's no cell phone reception. Even the wifi was spotty. I liked it that way though. Everyone was forced to put down their devices and focus on the week at hand.

Our awesome guides from Colorado Mountain School;
Double, Lil' Bit, Author, and Hollywood

Our camp got to have 3 guides (all guys) from the Colorado Mountain School stay with us all week; Lil' Bit, Author, and Hollywood. Double (M) joined us on the last day to help with the graduation climb. We also had Rainer (F) from FD and a married couple, Mama Flub and Gus Gus, respectively camp mom and camp photographer. Never having any kids of their own, Mama Flub considers all of us her kids. I will never forget a moment I had with her at the bank of the Colorado River during a tradition that will not be named. Those of you who were there will know.

Our chefs for the week, Chamomile (F) and Antelope Jamboree (M), were fabulous! They provided us with hot and cold breakfast every morning (as well as tea and coffee), a buffet table of lunch foods to pack for the road, and a themed dinner every night. Every dinner was SO good that I and many others got seconds and thirds. The dishes were all vegan, vegetarian, or meat. All organic: no refined or processed foods. They gave us some real, wholesome, good nourishment for our strenuous days. We all sat at an extremely long dining room table and shared stories during meals. Dinner was one of my favorite times of the day there. I got to eat so many kinds of foods that my kids would never let me make at home!

Mmmbop and Steel selfie

In the evenings, we had "camp fire" which was sometimes outside or more often just sitting around the gas fireplace in the living room. There was always a popcorn-style question asked where people could chime in to add to the group conversation. After the first full day, they introduced 3 awards; on-rock, off-rock, and sunshine. On-rock is the award (2 toy swords) for someone who just crushed it on the climbs/hikes. Off-rock (purple feather boa) is someone who showed real compassion for people. Sunshine (rainbow sunglasses and cat covered rainbow case) is for someone who is happy and supportive. All the campers and some of the staff got to receive these awards. The best part is that the recipient was required to wear/carry the award for the whole next day. On the first climbing day, Rainier said we all crushed it; it was a group crush. That's part of how we got the camp name Deep Group Crush. #deepgroupcrush

Arches National Park, balancing rock

We went hiking in Arches National Park mid-week. The sandstone was carved into shapes by water and wind. We had 3 days of climbing, due to weather raining out one day.  

My favorite picture of the week;
Strawberry watching the storm across Dead Horse Point

However, the rain day was actually the best day of all. We went to Dead Horse State Park. It has this amazing bend in the Colorado River that carved out breath-taking canyons. There was a thunder storm across the canyon, probably the one that rained on our climbing parade. 

We were sitting there at the top of the precipice, watching the lightening, and hearing the low long rumbles of the thunder. This is the hardest moment to explain. It's humbling and awe inspiring. I will never forget sitting there in silence and connecting with the earth that way.

Meditating at Dead Horse Point State Park

Cowboy Colin with Boots, Piranha, Bandcamp, Steel, and Alcina

One evening, we got to have dinner at Red Cliffs Lodge. The owner, Colin (pronounced like semi-"colon"), is a good friend of the organization. He had the group to his restaurant and offered an open bar for everyone. He himself actually cooked the steaks for each of us. He's a good old cowboy and enjoyed the adoring attention we all laid on him. I got to have a deep conversation with Author over dinner. Shout out to Author. That meant a lot to me and I felt a real connection with him then.

Our view from dinner at Red Cliffs Lodge restaurant

The climbing was great too. Outdoor rock climbing is very different from indoor. There aren't color-coded routes. The hand and foot holds don't protrude from the wall. The sandstone is smooth, slippery, and sandy. The routes aren't always vertical. There are rather large cracks and crevices. In short, it's a lot harder than straight up indoor climbing. I did get to meet a little lizard on one of my climbs. He was a much better climber than me. Our group varied from experienced climbers to people who had never rock climbed ever. By the end, we were all experts!

The final day was graduation Friday. It was raining, hailing, and snowing in turns at the lodge. It threatened to cancel our best climb yet. Oh heck no. We got ourselves out the door by 7 am, actually 6:55 am. When we got to Looking Glass Rock, it was still spitting a little bit but still climbable weather. We all got our gear ready and started the climb.

The final climb was done in 4 teams, each led by a Colorado Mountain School guide. The climb was done in 3 legs. Once one team was at the first anchor, the next went and so on to the top. My team was the first to go. It was very windy on the first leg. The guide with us said it wouldn't be as windy on the next one. Uh, nope. Windier. Much windier. At one point, the rock gets narrower. They have a rope anchored between two vertical points there. I hung onto that rope for dear life, not to mention I had someone tied in front of me and another behind me that would have gone down too. And then the third leg of the climb, which was also supposed to be less windy, was even more windy. Over all, the wind factor was just nuts. I'm told it was 20 mph winds.

So we get up there first; Hollywood, Ultra, Patch, Mama Flub, myself, and Boots. I couldn't feel my toes. The tightness of the shoes and the cold air/wind had frozen my toes. Patch was amazing. While cuddling Ultra to keep her body temp up, he laid on the rock and put my socked feet under several layers of his shirts/coats to help them warm up. I was seriously scared about frost bite and his body language told me he was too. Once my toes started getting circulation back, the ends had feeling and the rest felt like they had bandaids around each one. As other teams got to the top, they joined the cuddle puddle in concentric rings.

Then we did a repel through a big hole in the top of the rock and down through the dome of the looking glass. It was 200 feet up. We tied in up top and lowered ourselves through about 15 ft of tight sandstone. Then it was all air to the bottom. Ultra and I went down first due to needing to be out of the wind/cold. I got to watch everyone else come through this hole with their various reactions. Bullseye was my favorite. "I'm gonna die. I'm gonna die. I'm gonna die." Others flew down. Some went slow to the enjoy the view. As everyone was making their way down, the sun came out! I got a great panoramic view of the rock on my phone. Yup, that's an iPhone picture! After the last person touched down and we got packed up, the staff led a ceremony called Baci. I'm still wearing my threads that Gus Gus tied onto my wrist. Then it turned into a big hug-fest. Deeeep group hug!

Graduation Day; Looking Glass Rock, 200 ft tall, those little spots in the middle are people in our group.

That night at camp fire (indoor gas fireplace) was the best evening yet. We all shared what the week had meant to us and what we were taking away from it. Many tears. What do you expect from 15 women?!? Then we had a very touching moment on the porch, while the rain fell all around us, and we got to remember those that we lost to cancer. I also said a prayer for my friend, Lori aka Nuni. This is another evening I'll never forget and will never be able to adequately describe.

I love my husband, our children, and the rest of my extended family. I'm thankful for all I have. I'm grateful for the clean bill of health I've been given (no evidence of disease for over a year). I am blessed to be given this opportunity in Moab with First Descents to make life-long friends and create forever memories. It's so much more than a vacation with rock climbing work-outs. I am taken aback by the profound connection and love I feel for all these people after knowing them for less than a week. It's so cliché to say you had to be there but you really did have to be there. I'm so glad I was. I can say for sure that it was one of the best weeks of my life.

Extra deep quotes:
"DeeeeEEP SHADE!" -Patch
"Drink more water." -Ama D
"I'm going in DJ Ultra's van!" -Everyone
"You ALL crushed it today. It was a group crush." -Rainier
"Dance party! Dance stretch!" -Everyone
"Rainer and Patch, you made dents in the van." -Steel
"I get knocked down, but I get up again. No, you're never gonna keep me down." -Ultra, Rainier, Standby, MmmBop, Cilantro, & Steel
"Meow or never, ladies!" -Patch
"Tampoons and coupins. Tampoons and coupins. Minnesota loves their tampoons and coupins." -Bullseye
"I GO FISHING TOO!!" -Bullseye


Peace, love, and DEEEEP group hugs to all my crushers.

Race for Hope 2015 Results

May 3rd was the 2015 Race for Hope.  Thanks to all the generous donations from people like you, my team raised $4295 which placed us at 106th place out of 586 teams. The total amount raise for National Brain Tumor Society and Accelerate Brain Cancer Cure charities was over $2.1 million. It's the largest single fundraising event for brain tumors and cancer to date. Thank you for helping us reach such an outstanding number for those amazing charities.

As for race day, I was blown away. I had team hats made. The race gives t-shirts to the registered participants. I was wearing a yellow survivor shirt. There were over 350 survivor participants and 11,000 supporters registered. Margot and I started the race with the timed runners. We finished at 33 minutes and 30 seconds (much to our own surprise) 940th and 943rd respectively out of 1682. I'm pretty proud of us and my whole team. Thank you to those who supported us in every way.

Next year, I will still form a team and train for it but I won't be campaigning as hard as this year. So thank you, thank you, thank you for donating this year.

Quarterly update

I had my latest MRI on Monday. Wednesday my neurologist told me it was stable with no sign of disease! I have to wait until Monday when I meet with the oncologist to see how long we can go before the next MRI. I'm thrilled.

I slipped on the ice last week and hurt my ankle and wrist on my right side. I've gone to physical therapy a couple times and she's told me that I have a pulled muscle in my calf that, when swollen, cuts off the nerve that goes to my ankle and foot. I also pulled a few tiny bones in my hand near my wrist and the tendons/bones system isn't situated correctly. I'm working on it though. This also means I haven't been running for the last two weeks. I wasn't even working towards my 10k steps per day goal. I'm finally walking without pain or getting pain towards the end of the day.

I will get back to training once I'm healed. In the meantime, I'm still working on fundraising for my team for the Race for Hope 5k on May 3rd. If you haven't checked out my page, please do so here. Or you can read my race dedicated blog post.

I'm super excited for my First Descents week long adventure in May. FD is a charity group that provides week long outdoor adventures for young adult cancer survivors for free. I'm going outdoor rock climbing in Moab, Utah. I've only been out west once and that was in high school to go to Anaheim.

While I'm happy for myself and my family, I'm also sad for my friend Lori. She's back in the hospital for her second round of chemo. The first round didn't work as well as they hoped so they had to change up the treatment. She's in pain most of the time and they're worried her disease has spread to her brain or spine, due to constant migraines. Please pray for her.

Lori is fighting for life

October 29th 2014, Earth Treks

One of my really good friends, Lori Nam, has fallen very ill from her cancer.  She lives down the block from my office.  We went to lunches together and were rock climbing buddies.  I'm still in shock at how quickly she's deteriorated from the diagnosis of her second relapse last Fall.  I was just climbing with her the week of New Year's and now she can hardly talk without getting out of breath.  It's very hard to see a friend go through so much pain and emotional turmoil.  I wish I could take her pain away and give her a cure but I can't.  All I can do is support her and spread the word about her disease and mission.

I can't describe her and her story any better than the leader of her Lori Strong campaign, Swab and Save Someone (SASS):

When anyone meets Lori for the first time, you are compelled to either fight with her or for her. Lori, a DMV resident, is the most unique balance of infectious energy and genuine modesty baked into an all-around beautiful young woman. In 2009, just a year after getting married to the love of her life, Lori, 29, was diagnosed for the first time with Non-Hodgkin's Lymphoma (NHL). Since then, over the course of five years, Lori has survived two grueling bouts with the cancer and sent it into remission each time. What a beast! This isn’t out of character for Lori, a veteran crossfitter, because she’s a tough-as-nails warrior as much as she is a humble soul. 

However, cancer sometimes doesn’t care how many wins you claim with treatment and for an unlucky few it can eventually break down its opponents. Unfortunately for Lori, this is the exact setting for what could be her final round with NHL. Currently, diagnosed with stage 4 cancer, the chemo and related treatments that Lori has relied on in the past will now have no effect. Bone marrow transplantation is all that’s left now and it’s do or die. Yes, die, as in three months to live if she doesn’t have the transplant, and more importantly, find a genetic match for the treatment. A genetic match means someone else, not Lori, will decide if she lives. With all the guts that Lori has this is an opportunity to join in that strength and help her fight for her life. If we stopped with Lori, however, she wouldn’t forgive us, and neither could we. This is why we’re rallying the bugle cry! We’re asking for donors, we’re building a movement, and asking all our cancer warriors to unite as an unstoppable force. Crowd sourcing against cancer is nothing new, but think of this email as a simple call to action as much as we want it to be a disruptor for how communities participate in the cancer fight.

You know what’s the effective philanthropy? Donating your blood, sweat, and tears. If tears unite us, sweat shapes us, then blood and more specifically bone marrow will measure us. There are over 12,000 patients diagnosed with NHL this year, and all 12,000 are waiting for donors.

There are four ways you can help:

1) Attend the massive Beat Cancer: Bone Marrow Registry Drive party:

George Mason University (Fairfax Campus) Johnston Center, 3rd Floor Meeting Room D on February 24th-25th, 2015 from 10AM-9PM
https://www.facebook.com/beatcancerforlorinam

2) Get a Kit. Swab Your Spit and Commit! It can save a life!http://www.swabandsavesomeone.org/

3) Register to become a Swabbee™ (we want their spit) or as an Official Swabber™ (Volunteer) - http://www.swabandsavesomeone.org/ and http://doodle.com/qtc6dgun3s28dw28

4) Promote this event to any and all local media outlets, volunteer organizations and commercial institutions you might have relationships with. Remember, any of the above avenues of support can give Lori and others the best fighting chance.

Additionally, to see Lori’s battle live and receive updates from this movement and future Swabbings™ click on the link: 

https://www.facebook.com/beatcancerforlorinam

Team Steel for DC Race for Hope 2015

I've started my own team for the Race for Hope 5K 2015 which is taking place on May 3rd. If you'd like to donate or join my team, you can do so at Team Steel. I will be running with a timed chip in the race. Others are welcome to walk with Charles and the kids. My fundraising goal for this year is $2,000 but it would be great if it even went higher. I am thinking of getting hats with the team name for those walking or running. Let me know if you'd be interested in that.

You can also support the team with moral motivation on the team Facebook page:

https://www.facebook.com/TeamsteelRFH2015

Thanks in advance for your participation and/or donation.

Happy news from the oncologist

I’m happy to report that my MRI brain scan from Monday was stable and no evidence of disease. The oncologist and I are both very happy with the results. He even used the word remission and is confident that the treatment I had last year will keep it from returning “for many years, if ever”. Although there are no studies on cases like mine to help predict my prognosis, he did talk about writing up my case for a medical journal in the coming years (maybe 5 or 10) for other young adults in my position to be able to read. 

I took my last chemotherapy pill one year ago today and have gained back about 95% of my pre-surgery energy and stamina. I will continue to have monitoring scans every 3 months for several years and then about every 4-6 months after that.

Our little family had pizza, sparking apple cider for the kids, and wine for Charles and I as a dinner celebration. We told the kids about our good news and they asked any questions they had. We have a busy weekend planned with a birthday party, tree decorating, and cleaning the bathroom (guess who's doing that).

Happy Holidays everyone. I got my wish early!

3 Month Update

Well this is a happy update. Not only am I coming up on one full year since my last chemotherapy pill, but I got a stable scan on Monday! That means no new growth, everything is the same. There are still post surgical and radiation changes but they have been the same since June and October 2013. This is exactly the news we hope for every time. I was nervous this time since I had a migraine a few weeks ago but it turned out well. Thank goodness my intuition was wrong this time! I have a follow-up appointment with my oncologist on Friday but I fully expect that we will go another 3 or 4 months until the next scan.

And also, we recently paid off the last outstanding medical bill. We're very excited about that. It's taken 16 months but we did it.

Congressional Advocacy for Brain Tumor Research Funding

Lainey Titus Samant, Associate Director of Public Policy for the National Brain Tumor Society, writes:

Last week, members of Congress returned to Washington, D.C. from their home districts following the November elections. Will you welcome them back and ask them to take immediate action in support of critical medical research funding? 

Research funded by the National Institutes of Health (NIH), including the National Cancer Institute (NCI) and National Institute of Neurological Disorders and Stroke (NINDS), is critical to advancing treatments for brain tumor patients. Together, these institutes are the largest funders of brain tumor research in the country, and their funded projects are working to discover new ways to treat and eradicate brain tumors. Yet, biomedical research is complicated and takes many years, and thus needs a consistent and reliable funding stream. 

Although there is support in Congress for a well-funded NIH, the budget process is a cause for concern. In September, Congress continued the trend of recent years by forgoing the full budget process in favor of a temporary spending bill, known as a continuing resolution, or CR. The CR extended government spending from Fiscal Year 2014, which ended on September 30, until December 11, when Congress will either pass a full budget or an additional CR. When a CR is passed, no increases are made, and this year a slight cut was made to the NIH, including NCI and NINDS, through the CR. 

It’s time for Congress to pass a real funding bill that includes an increase for the NIH before the December 11 deadline. Ask your member of Congress TODAY to put an end to temporary fixes and pass a comprehensive funding bill for Fiscal Year 2015 that includes an increase for NIH, including NCI and NINDS.

Katie Bevington, survivor of grade 3 astrocytoma, adds:

If you'd like to sign this form and send to your own congressional representatives, please click this link. It only takes 5 minutes.

I personalized my letter with a paragraph about my own experience; I am a grade 3 astrocytoma brain tumor survivor and mother to three young children. I was lucky this time that my surgeon could remove most of the tumor but I know eventually it will regrow. Having already been through the extremely difficult radiation and chemotherapy treatments already, I want to know that there are better treatments available next time I need them. Please fund the NIH research programs.

Love, Comfort and Safety

I've been doing meditation daily through my headspace app. It's been extremely helpful. I'm less anxious, more calm and patient with the kids and sleeping better. Right now I'm making my way through the "appreciation pack" that has 10 minute guided meditation that focuses on how to appreciate what you have in your life. It's more than just listing what you are thankful for. It's more about the emotions behind those things.

After reflecting on my life, I know I'm thankful for so many things. But what it boils down to is love, comfort and safety. I have so many people who care for me, think about me and love me. I have so many people that I love and care for. Those people create a feeling of comfort for me, not only in times of need (which I've had a lot of recently) but also in times of stability. I've been cared for with so much love that it's comforting when I even think of it.

Safety is a little broader. I feel safe talking about anything I need to with Charles, which also provides comfort. I know we will always have a roof under our heads and food to eat. I have a feeling of safety with my job and career. I know our children are generally safe and happy (even if there's a small fear of a school shooting happening). I am currently "no evidence of disease" and I have an excellent medical team should that change.

Overall, I'm very happy these days. I have so much to be thankful. Of course the best time to reflect on that is 1 am. Ugh!

2 month update

I had blood work done Monday, MRI Wednesday and follow up appointment today. The MRI didn't go as smoothly as usual. The vein in my arm blew out and contrast got under my skin. It's the most painful needle stick I've ever had, hurt all day. The good news is that it was worth it. There are no changes in my brain. My white blood cell count and platelets are both a little low but I was reassured that was nothing to worry about.

My fatigue has gotten markedly better in the last month. I'm completely off one sleep medication and down to a 4th of the original dose of the other. My sleep is much more restful now and meditation is helping me get to sleep quick and probably helping me sleep through the night.

Next scan in 3 months.

Relaxation and Meditation

I went to a one hour presentation at my young adults with cancer group. I'm now a believer. This guy was previously a high school science teacher so he comes at it with a scientific mind and explained why different things get a mind/body response. This presentation was about techniques so it wasn't just sitting there breathing. We did the hippy dippy stuff like chakras but also pain management, focus, and rhythmic breathing. It was very interesting to hear about the body's stress levels and responses with each exercise. Even after just an hour, I was so relaxed. 

Yesterday I had a cup of coffee and a coke. Last night, I didn't take any sleep aids and cut my xanax in half. I did the techniques before going to bed and was asleep within an hour. I know that doesn't sound like much but it's a huge accomplishment without my medications. Usually it takes hours even with the meds sometimes. I wish I could attend his classes but they're at 11am on Thursdays which isn't really possible.

Anyway, no new medical news. I'm just hopeful this will help me sleep better!

Not a good day at work

I very very rarely will have a "bad" day at work. In fact since I started back full time February 2013, there's only one day I can think of that I would call a bad work day. That was the day of a deadline on a big project when the company servers crashed. I was the only one who could do work on a file that was supposed to be shared between myself and 3 other people. So with the deadline looming at 5pm, I was trying to do the work of 4 people.

Today I will call a bad day at work and generally just a bad day. Grace woke us up at 5am saying her ear hurt so I'm tired. I drop off Ellie at her school, Liam at camp, take Grace to the doctor (and wait), pick up the prescription (and wait), give it to her, take it home to put in the fridge, then take her back to camp. So already I'm not in the office until 11:30.

I go to sign in the computer. You know, the one with all my custom commands and settings? It won't let me log in. I try again, same thing. Restart and try again, same thing. Basically, our dedicated IT person spent all day (and probably still is) trying to get the thing just to run. I spent my time on the shared computer, which is great that they have. The problem is that the user profile I've built for over a year is only on the personal desk top hard drive so I have no custom settings on this thing. Every shortcut key I have programmed on my own profile does something different in the base version. Not to mention that the shared computer is not as quick memory wise. It took me 3 times as long to do a set of mark ups than it should have.

*sigh* Tomorrow will be better. Tomorrow will be better. Tomorrow will be better.

The best part of today was that when I stomped inside and said "I'm having a bad day!" Grace said "Sit down and tell us about it." <heart melting>