Gayle

The Girls Club

I have been reflecting lately on the state of my health, which is excellent, thank you very much. Less than 2 years out from my Acute Myeloid Leukemia diagnosis, I am training to climb Mt. Kilimanjaro. It is extraordinary. Many bone marrow transplant recipients become disabled by complications of the transplant. My transplant and the ensuing recovery have been remarkable because I have had so few complications. I suppose some of this good fortune is attributable to luck. I believe my superior outcome is a direct result of the care I have received from medical professionals, all of whom are women.

My primary care physician, Michelle Goh, diagnosed my leukemia. I don’t give her too much credit for that. My white blood cell count was so far out of whack she couldn’t miss it. She did however; diagnose me with Alpha-1 antitrypsin deficiency. For most of my adult life, I have battled respiratory issues. I have been treated for chronic bronchitis, asthma and allergies. Finally, Dr. Goh discovered the root of my problems. I have a genetic disorder that affects my pulmonary function. It is an enormous relief to have an answer. Why didn’t other doctors (males) notice? This did not occur overnight; I was born with Alpha-1. I have been symptomatic since my 20’s.

All of my care providers at MGH are women. From the technician that draws my blood to the Oncologist that directs my care, women all. The oncology nurses administer my intravenous medications and vaccinations. They ask questions and observe me keenly. If anything seems amiss, they report directly to my Bone Marrow Transplant team. My BMT team is Julie Vanderklish N.P. and Areej El-Jawahri MD. They love me. I am not kidding. I feel loved when I go to my appointments. They put up with my foolishness and bone headed maneuvers. At one point, I threatened to stop taking all my meds and discontinue my follow up care. Julie talked me off the ledge and convinced me to follow the treatment plan. Occasionally, they have to be firm with me. I was sick for 6 months straight because I disregarded my compromised immune system. Dr. El-Jawahri gave me a bit of a talking too. They remind me from time to time that I am a success story and I shouldn’t screw it up.

Over all they are kind, compassionate and fiercely intelligent. I don’t know where I would be without them. It is an honor to have these ladies in my life.

thumbnail_IMG_20151010_162439 — Then Oct. 2015

Whole lotta fund raising going on

As my training regimen intensifies, fundraising also ramps up. When I embarked on this adventure, I was concerned with my physical strength. At the outset, my muscles had the consistency of pudding and I got winded on the escalator. I recognized that I would have to dedicate a significant amount of time to training. I knew that I would have to finish strong with my fundraising in order to meet my $10,000.00 goal. That is what I am attempting to do, finish strong with a fundraising push in the last 2 months. We leave for Africa March 17 and the end date for funds is April 1.

Our team fundraiser, The Zombie Prom was Saturday Feb 4^th. It was a smashing success. My team mate Christine and I were the makeup queens. For a donation, we would apply Zombie makeup. The serious Zombies showed up with makeup and some of them were impressive.

As a team, we raised over $3000.00 and it was a blast! We had the event at Jalapeno’s in Bellingham and the food and drinks were excellent. Drinking, dancing and zombie debauchery made for an entertaining evening.

I am hosting a fundraiser concert Sat. Feb 18. Dave McLellen of C.I.Y.L.R. (Concert in your living room) is donating his time and talent. My friends Meg and Paul are kindly providing the venue. Meg mentioned in an offhand way that I could use her house for an event. Unbeknownst to her I had recently contacted Dave about doing the concert. The words were no sooner out of her mouth when I took her up on the offer. They have a nice open concept home that should work great for a classical guitar concert. So far, I have sold 18 tickets and people have been generous, paying anywhere from $20-100.00 per ticket. There are at least six other people who say they are going, but haven’t purchased a ticket yet. It is driving me a little crazy. Seating is limited so I need to keep close track of the numbers. I want to sell 25 tickets, but I’m not sure if I should sell to other people or if they are really coming. Buy the ticket already would ya? You can buy a ticket here: https://www.facebook.com/events/1306520436072819/

IMG_20170203_113714818 — Handcrafted quilt donated by Christa Nee

My friend Christa donated one of her handcrafted quilts for me to raffle off. I’m calling it the Cosmic Quilt Raffle. I’ll be posting an event on Facebook to kick off the fundraiser. I need to sell at least 30 tickets at $10/each. I think the quilt is too attractive to let it go for any less than let. I may end up going door to door if I have to. You can buy a ticket by going to my Climb 2 Cure website and making a donation. I will mail you the raffle tickets.

So far, I have raised a little over $6000.00. When the funds from the Zombie Prom are disbursed, the tally will be near $7000.00. Three grand to go. Where am I going to find $3000.00 in donations? The quest continues. I’m training hard and chasing dollars. Kilimanjaro looms large.

You can donate here: Climb 2 Cure

Treacherous conditions = fun?

Training for the Kilimanjaro hike with my Climb2Cure friends has turned into quite an adventure.

The last couple of training hikes have included some difficult conditions. First, we went to Mt Monadnock (Elev 3165) in New Hampshire. If you’re unfamiliar with Monadnock, it is a massive mound of granite adorned with granite boulders of varying shapes and sizes. The day we chose to hike Monadnock snow had melted and refrozen in icy sheets of cascading death. We strapped on our micro spikes for traction and headed into the “you are about to break a bone” zone. Hiking up was a learning experience. At one point, I had my fingers wedged in stone cracks trying to pull myself up the slick surface. I made the mistake of putting my knee down. My right spikes came off the ice leaving me balancing on a slippery knee and my left foot. I thought I was about to plummet down the rock strewn slope when adrenaline kicked in and I hauled myself up onto a flat surface. Fear is an excellent motivator. Good news, I learned to keep my spikes on the ice. Bad news, going up is the easy part.

Descending the mountain was an exercise in concentration. Every steep section you had to study and pick a route. You could not relax when the going looked easy. I landed on my butt when I least expected it. There were many slips and slides. One of my teammates, Jeff, took a spill. A nasty tumble that resulted in a deep thigh bruise and an aching arm. I don’t think anyone escaped without at least one fall. Somehow, it was fun. After it was over and the cascading sheets of death had not actually claimed a life that is. I look back on it fondly. I have never had a hike quite like that before.

Well we decided to play it safe after that. We met the N.Y. Climb2Cure team at Mt. Greylock for a moderate hike to the summit. Once again, I strapped on micro spikes in case of icy conditions. The trail and the weather were beautiful. A light coat of powdery snow underfoot and a few flakes drifting down. The summit was cold and breezy, as you would expect in January. After an uneventful ascent, we decided to take a different trail down. Everything was going well until we came to the Peaks Brook Ravine. Was that on the map? How did we miss that? The trail suddenly became quite steep with a hard glaze of windblown snow. The edge of the trail gave way to a precipitous drop down to the brook. You guessed it. People started shooting off the side of the trail. Luckily, nobody went all the way to the brook thanks to the good fortune of slamming into the trees. Once we made it to the brook, we had to scrabble up the equally unreasonable slope on the other side. I kept my spikes underneath me as I had learned from the previous hike. It only took us 90 minutes to cover half a mile. We emerged bruised, but not broken.

Again, I thoroughly enjoyed the experience. I am not sure everyone shared my enthusiasm. It is not necessarily fun when you are in the midst of it. Afterwards though I feel elated at the accomplishment. A little adrenaline can truly make your day. I wonder how many of my hiking companions agree. I am not going to ask; I’m fairly certain that I’m in the minority.

IMG_20170128_110948691 — Mt Greylock summit

1/2017 Climb 2 Cure Inspiration

How did this hiking Kilimanjaro concept get started? It seems a little odd doesn’t it? A bunch of people from all over the U.S. climbing a mountain in Africa to raise funds for LLS. Well, here’s the scoop.

In 2014 Lila Javan, an Acute Myeloid Leukemia survivor, was planning a solo trip to climb Mt. Kilimanjaro. As she was about to book her flight, her cancer came back after being in remission for almost 5 years. During her months in the hospital, her friends hung a picture of Kilimanjaro on her hospital room wall. This helped inspire Lila and keep her focused on her goal to get back to being healthy and climb that mountain. The photo became a talking point for nurses, doctors and visitors during her months at UCLA. She inspired many of these people to join her for the climb when she achieved remission. Lila decided to use this as an opportunity to give back. Working with Team in Training, a fundraising division of LLS, she formed teams of climbers throughout the U.S. that train together to climb Mt. Kilimanjaro. The ultimate goal is raising ONE MILLION dollars for the Leukemia and Lymphoma Society mission. Donate Here: Climb 2 Cure

I find Lila’s story equally frightening and inspiring. She had the same type of leukemia as me. She endured months in the hospital. She received a stem cell transplant. So did I. She was healed and healthy and training to climb Kilimanjaro. Hey, me too. Then her fucking cancer came back. (I checked the thesaurus for a substitute for fucking. Damned was the only suggestion and that does not adequately express my thought.) She was nearly 5 years cancer free and it came back! I can’t tell you how chilling that is for me. When I finally came home from the hospital, I told Steve I could not go through that again. Lila did though. She made it through the AML protocol twice. That is truly inspiring. I guess that maybe I could if I had to.

Lila’s team from Los Angeles successfully climbed Mt. Kilimanjaro last week. That is inspirational. She beat AML twice and summited Mt Kilimanjaro! They sent home beautiful photos. I am excited for the Massachusetts team. Training and bonding with my team has been a moving experience. We have 8 weeks left to train and fundraise. The Zombie Prom is coming up Feb 4^th. Concert in Your Living Room is Feb 18^th and right now I have to get on the treadmill. Kilimanjaro looms large in front of me. As the time gets closer, I feel the mountain towering over me.

Donate Here: Climb 2 Cure

I was diagnosed with Acute Myeloid Leukemia in June 2015. After a grueling chemotherapy regimen I received a life saving Bone Marrow Transplant. I believe I’m cured. I’m extremely fortunate. 74% of adults diagnosed with AML will die within 5 years. That’s why I’m asking you to donate to my Team in Training fundraising page for CLIMB 2 CURE!

Thank you!

Gayle Garlick

1/2017 Is This Really Happening?

I’m leaving for Africa in about 70 days. It seems unreal. Am I actually going to climb Mt. Kilimanjaro in Africa? I’ve paid the airfare and the expedition fee so I guess it’s truly happening. This is something I’ve dreamed about and now I’m doing it with a team of people. We’re all working toward a common purpose; raise money for LLS and raise awareness of blood cancers. Of course there is another goal, reach the summit. The mountain looms large in front of me. Time is flying by.

Training is going well…I think. I vacillate between confidence and self-doubt. When I’m hiking people fly by me. It doesn’t bother me too much when it’s younger kids. I know I can’t keep up with the 20 something crowd, but when they look over 40 I get a bit pissed off. I’ve been hiking and running on the treadmill and planking. Shouldn’t I be getting faster and stronger? I have to remind myself that a year ago walking 2 miles was a challenge. I hiked with my Climb2Cure group this weekend and we did 10.5 miles in 5.5 hours. I can run over 2 miles on the treadmill. I am getting stronger, but will I be strong enough by March to summit Kilimanjaro?

Fundraising is going well…I think. I waffle between feeling good about what I’ve raised and beating myself up for not doing more. I have raised a bit under $5000.00. I have a fundraising event scheduled for Feb 18 and my Climb2Cure group has a fundraiser scheduled for Feb. as well. February 4 we are holding a Zombie Prom. I’ve never heard of such a thing, but it looks like fun. The venue, Jalapeno’s in Bellingham, is donating the space. We have a DJ, Damont Batchelor, who is donating his services. I’ll be doing zombie make up. All in all, it looks like a good time and hopefully we’ll raise a bunch of money. Feb 18^th I have a classical guitarist performing at my friend Meg’s house. Dave McLellen donates his time and talent for C.I.Y.L.R(Concert in your living room). His mission is “Spreading the joy of charitable giving and the classical guitar, one living room at a time.” Very cool. It will be a slightly different vibe than the Zombie Prom I imagine.

Yup it’s happening. Will I reach my goal of $10,000.00? Will I summit Kilimanjaro? There’s only one way to tell. Tune into the next thrilling installment of Gayle’s Climb 2 Cure Adventure.

Training in the Blue Hills. That’s my butt on the right.

12/2016 Best Christmas Gift Ever

My bone marrow donor has allowed me to contact her. It’s the best Christmas gift ever. When you receive a bone marrow/stem cell transplant the donor is anonymous. They aren’t allowed to know my information and I can’t know theirs’. The only facts I was given: she is a 24-year-old women from N.Y. I had to wait a year before I could even attempt to contact her. On the first anniversary of my bone marrow transplant I wrote my social worker at MGH. I gave permission for my contact information to be released to my donor. Then I waited. October, November, I heard nothing. I assumed that she did not want to communicate. I felt disappointed although I completely respected her wish for privacy. How could I ask anymore from her than what she had done already? I wanted so desperately to thank her, to tell her she saved a wife, mother, step-mother, grandmother…etc.

Today (Dec 14) it happened. I was at my appointment at MGH when my social worker Bev handed me an envelope. “Your donor’s contact information is inside.” She said. I almost cried. It was such a relief knowing that I would be able to thank her. Without the bone marrow transplant I would be in remission. With the transplant I believe I’m cured. Yes, there is a small chance that AML will reoccur, but it is small. My doctor looked me in the eye and said “I believe you have had a curative bone marrow transplant.” That’s good enough for me.

I emailed my donor as soon as I got home. It took a few hours for her to respond. I want her to respond right now! Steve immediately googled her and found out some interesting facts. She’s an incredibly nifty person. Her name is Kelly; she is exceptionally accomplished. She’s studying to be a physician’s assistant and has traveled extensively. When I was in the hospital she was in Tanzania. It wouldn’t matter if she was a troll living under a rock. She saved my life. Yet, Somehow, inexplicably it makes me happy that she is an independent, intelligent, adventurous woman. I hope to meet her someday soon.

11/2016 Because I Can

My performance on training hikes is much better. I threw up on the first hike so improvement is easy to attain. Seriously though, I’m doing fairly well. Saturday Nov. 12 I met Coach Tom and 3 of my Climb2Cure team mates in the Bluehills of Milton, Ma. We hiked uphill and down covering about 6 miles in 4 hours. Not record breaking time, however I felt much stronger. The extra hiking I’ve been doing at Wachusett is clearly helping.

Sat. the 19^th we went to Mt. Monadnock in Jaffrey, NH. Coach Tom invited several of his friends and it was a gregarious group. Prior to starting the hike Tom christened me with my trail name; Bic. Huh? He explained it stands for “Because I Can”. Okay I’m good with that. I hike because I can. I fund raise because I can. I’m leaving cancer behind because I can. Several people called me Bic during the day and I was oblivious. This trail name thing is going to take some getting used to.

Back to the hike. I wasn’t sure I was ready for this. I’ve hiked Monadnock in the past and it is a bit of a challenge. We went up one of the steeper trails. I was just fine. I’ve never been a fast hiker, but I was able to poke along at a steady pace and summit fairly easily. We covered 6-7 miles and I was surprised that I didn’t struggle. I’m very encouraged to take on bigger challenges.

There is still much to do. Let’s not get over confident, Monadnock is a far cry from Kilimanjaro. My cardio and leg strength are surely improving, but I’m still weak. I am a long way from my fundraising goal of $10.000. and I don’t know how I’m going to pay for all the equipment I need. I’m going to do the best I can every day; Because I Can.

On Monadnock with some team mates. L->R Me, Coach Tom, Christine, Dustin, Jeff

11/2016 Why am I doing this?

Why am I doing this? Climbing a mountain in Africa I mean.(Climb2Cure) Because it works. We’ve all heard of Susan G. Koman and the Avon 3-day walk for breast cancer. The Koman organization has, to date, invested more than $2.6 billion in groundbreaking research, community health outreach, advocacy and programs in more than 60 countries. Their efforts helped reduce death rates from breast cancer by 37 percent between 1990-2013.

High profile events attract attention and provide an opportunity to raise awareness. Hopefully, when the devastation of blood cancers becomes well known people will be motivated to donate money for research.

Why am I doing this? Because it happened to me. I was healthy and active. I ate well, enjoyed plenty of fresh air, didn’t smoke. I went from vigorous to near death in the space of one month. No exaggeration, it was a close call. It happened to me. It could happen to you or someone you love.

Why am I doing this? Since enduring the brutal treatment protocol for Acute Myeloid Leukemia I am distraught at the thought of someone else going through that. It is particularly heartbreaking to think of a child suffering through the chemo regimen and dealing with the long term effects.

The survival rate for adults diagnosed with AML is 26 percent. The protocol for AML is exactly the same as it was in 1973. That’s right not a single advancement in over 40 years. We have to do better than that. It comes down to research and that costs money.

Why am I doing This? Because people still die from Lymphoma. That’s supposed to be the treatable blood cancer, but it is still misdiagnosed. We need to raise awareness of blood cancers within the medical community.

I’m climbing Kilimanjaro for selfish reasons too. I’ve always wanted to try it. There is a chance that AML will come back. Since my treatment I am at a higher risk for breast cancer. I will be damned if I end up laying in a hospital bed regretting what I might have done. Some people think it’s a little too early for me to attempt this, but I feel like it’s now or maybe never.

Working out after spending 75 days in the hospital. It was brutal. I was so weak I fell and broke my nose.

11/2016 And the answer is…

Well, I met the Climb 2 Cure team Oct 29^th for a training hike. We met at the Blue Hills in Milton. Not the whole team. Our coach Tom and team members Brian and Christine were in attendance. I was nervous about my condition. Would I be able to keep up with the group? The answer is no, emphatically no. I was winded within the first couple hundred yards. My legs felt weak within 30 minutes. Halfway through the hike I vomited. Yup, emptied the contents of my stomach trail side. If my hiking companions noticed (and I’m sure they did) they didn’t say anything. Perhaps I should say that I had a respiratory infection and that was my first day on the antibiotic. I’m fairly certain that’s what caused the stomach upset. I nearly cancelled on the hike, but if I cancel every time I’m sick or taking a new pill there will be no training.

After I tossed my cookies I felt light-headed for a while however the mental fog lifted and I made it through the hike. We were out for approximately 3 hours. So while I wouldn’t consider the hike to be excellent, it’s done. I hiked uphill and down for 3 hours while I was sick as a dog. Now I know yours truly has a lot of work to do. Honestly I thought I would be a little stronger. I’ve been riding my bike and walking. I knew I wasn’t in great shape, but holy guacamole I didn’t expect to be that weak. Still I did it and that’s something.

The week following the team hike I ran on my treadmill Mon., went hiking for over 3 hours at Wachusett on Tuesday and did 2 little hikes Fri and Sat. I plank every day, a little longer each time. I’m trying by God. I’ll hike with the group again on Nov.12^th. Hopefully things go a bit better. Time to go hop on the treadmill.

After the hike ….

10/2016 Let the training/fundraising begin

Okay I’m signed up to hike Kilimanjaro. I’ve paid the expedition deposit, purchased overseas insurance including $250,000 emergency medical evacuation, repatriation and $500,000 medical expenses. I’ve personalized my fundraising page; now what do I do? I’ve committed to climbing a 19,000+ ft mountain. I’ve set a goal of fundraising $10,000.00. What have I gotten myself into? I can’t climb a hill let alone a mountain. I’ve been quite sick for 12 of the last 16 months. I’ve only now starting to recover some of my strength and stamina. I’ve got a long uphill climb ahead of me figuratively and literally.

The best way I can think of to strengthen my legs is ride my bike. So I start by going around the block. Not as easy as it sounds, I live in a hilly neighborhood. Next I ride to the rail trail and go up and down that 5 mile track. It takes me 1 hr 45 min. Every time I ride I stay on the bike a little longer until I feel like I can actually go hiking. October 29^th is a scheduled training hike with my team in training group. I hope I can keep up.

Fundraising is another hurdle although I feel that I can start slow. I have to concentrate on training right now so a few emails to family and friends will get the fundraising ball rolling. The results from the initial email are surprising. People that you expect to be responsive do nothing while donations come in from unlikely sources. I don’t even recognize one of the donors. There are many more people I can send emails to I just need to customize the solicitation message. I’ll make time for that soon. Next month I’ll do a Facebook campaign. If I have time I’ll make bracelets and sell them for a fundraiser. I’ll finish strong with my fundraising. I truly would like to raise the 10K.

In addition to training and fundraising I’m seriously considering approaching outdoor sports companies to sponsor me. The list of equipment I need for the expedition is lengthy and expensive. I’m hard pressed to pay for the trip, not completely sure how to acquire the equipment. Especially the things that I may never use again like a 10* mummy style sleeping bag. I’m not into roughing it so the chance that I’ll ever use the bag again are slim. I try not to worry how much I have to do. I can only do as much as I can today. One day at a time. Right now it’s time to hop on the treadmill and do some cardio.

9/2016 Kilimanjaro? Who’s idea was that?

I’ve thought about climbing Kilimanjaro over the years, but I couldn’t find anyone else interested in it. I went so far as to check expedition prices and ask friends if they would go, but no takers. Then I got leukemia, Acute Myeloid Leukemia, and thoughts of hiking anything evaporated. I was in the fight of my life. I received a Bone Marrow Transplant in Sept. 2015 and began the long slow healing process. After being treated for Acute Myeloid Leukemia walking up the stairs was a challenge. It was many months before I started to feel like my old energetic self again. Slowly I regained my strength; today I am fairly healthy although my immune system is compromised.

I started looking for ways to give back. Something I could do for other people suffering with Leukemia. One day in early Aug. 2016 an ad popped up on Facebook, Climb 2 Cure, a fundraiser for the Leukemia and Lymphoma Society. I clicked on the ad and they were climbing Mt Kilimanjaro as a fundraiser! That was it! I immediately started looking for more information. I floated the idea with my husband and sister. Neither one was enthusiastic. I asked doctor El-Jahawri her opinion and she said I could try it. I asked my nurse practitioner Julie what she thought of the idea. She was skeptical to say the least. My immune system is still compromised and I’m weak. My initial enthusiasm started to wane.

The cost of the expedition is $5-6000.00. It will require many hours of training and a commitment to fundraising. I would be spending a great deal of time away from my husband Steve. He spent a year taking care of me. He did everything for me and now I’m going to take off hiking and fundraising every spare minute?! I would be splurging all of our vacation funds on me. Would it even be possible for me to summit Mt. Kilimanjaro? Could I raise the funds? I was losing sleep over this. I set a deadline for the decision. By Oct 1 I would be in or out.

Sept 24^th I met the Climb 2 Cure Massachusetts team. They seem like a great group of people although quite a bit younger than me. Could I keep up with this group? Throughout Sept I grilled Steve. “Are you sure you would be OK with this? If you tell me not to go, I won’t. I’ll be spending all our vacation money on me. Are you absolutely sure?” I queried my doctor and nurse again. Same split decision, but Dr. El-Jahawri said something that resonated with me “…there is a point when fear and precautions can actually take away the joy of life, which is the whole point we did this transplant…”. Yes, exactly! If Steve’s OK with it and my doctor says I can try it than I will.

Photos during treatment