I feel better than I have in years. Literally two and a half years of varying degrees of illness. So…What do I do now?
I’m puzzled
My cancer is cured. That is what my doctor told me at my two-year visit. The FLT3 genetic mutation that I had increased my chance of relapse early on. The first hundred days after transplant were a high-risk time for me. Every day that passed decreased my risk of relapse. Today the chance that I will relapse is infinitesimal. My cancer journey is over. I will always be a transplant patient and I still have to see my doctor every six months, but leukemia is in my past.
Dr. El-Jawahri discontinued my last two prescriptions and what a relief that was/is. I have been taking an anti-viral and oral chemo daily for two years. The side effects were unpleasant. My intestines have been a jumbly, rumbly mess. I learned to be careful about what I ate. Still, some days I didn’t dare stray too far from the house. And the fatigue, a ball and chain I dragged through the day, mostly gone now. I feel better than I have in years. Literally two and a half years of varying degrees of illness. So…What do I do now?
When I was diagnosed in 2015 I was in the midst of a career change. I was one course short of getting an associate’s degree in web development. I was an A student and I had every intention of taking the final class in the next semester. In the third week of an internship, I was suddenly hospitalized and received massive amounts of chemo. For the next six months, I was incredibly ill. Guess what happened to my newfound knowledge? It evaporated. Chemo was like a blowtorch to my brain. I can’t blame it entirely on chemotherapy. Anytime you learn a new tech skill, it’s important to use it. Practice and practical application cements the information in your brain. It’s mostly the chemo though. It seems to have carved a hole in my memory.
So… what do I do. I spent time, energy and money on programming classes. Should I start over and try to relearn C++, HTML, CSS and Visual Basic? Alternatively, should I take this as a message from God? “Gayle, take a hint, a career in web development is not for you.” said the almighty one. What to do, what to do? I wake up at night with this question ringing in my ears. Let me be honest. It’s not just the career question that has me puzzled. My life changed abruptly in June 2015. Now it has happened again. Until recently, my world revolved around Leukemia, treatment and recovery. Today I am free to return to a normal life. You would think that would be easy. I’m sure I’ll figure it out although it might take some trial and error. No one can do it for me. Stay tuned in, the life after leukemia adventure continues.
It is odd. I owe so much to this young woman. Without a Bone Marrow Transplant, my Leukemia would have almost certainly returned. That would be curtains for me.
We left Massachusetts at 5am August 10th to head to Wisconsin. After twelve hours of traveling west on interstate 90 we stopped for the night just short of the Indiana border. Friday morning we finished the trip, just over 1100 miles. It’s a long drive but well worth the effort. I’m going to meet my bone marrow donor. Steve and I have been anxious to meet Kelly and thank her in person. It’s not possible to express the level of gratitude we feel, but we can at least buy her dinner.
It is odd. I owe so much to this young woman. Without a Bone Marrow Transplant, my Leukemia would have almost certainly returned. That would be curtains for me. I had Acute Myeloid Leukemia with the FLT genetic mutation. That genetic mutation means that my leukemia would not stay in remission with chemo alone. My best and statistically only chance was a successful transplant. If the match had been less than one hundred percent, I would probably have had significant rejection issues. I am in contact with people on the LLS community forums whose side effects are disabling. Leg swelling, skin disorders, intestinal, lung and liver issues to name a few. For some people life after transplant is a living hell, but life nonetheless. My recovery has been nothing short of miraculous. I’m nearly two years post-transplant and my complications are minimal and manageable.
Did you notice I said “had” acute myeloid leukemia? According to the medical professionals, I have AML that is in remission. They won’t consider me healed until the fifth anniversary of my transplant. I declared myself cured the day I got the transplant. That is my attitude. Leukemia is behind me. When I reached the summit of Kilimanjaro, I asserted my recovery from treatment and transplant as complete. Again, my doctor disagrees. I still drive into MGH every other month so they can draw blood, monitor my blood cell counts, check my general health and give me injections. In September, I get the final installment of my childhood immunizations. I hope the appointments will be quarterly soon. I’m not complaining. I am the lucky recipient of a 100 percent matching, unrelated, bone marrow transplant.
Which brings me back to Kelly, my donor. We met her and various members of her family Saturday night for dinner. I wanted to hear her side of the story. She tried to make it sound like not a big deal. She was in the college library when a donor drive was going on. Being the altruistic gal that she is she went ahead and filled out the paperwork and had her cheek swabbed. The chance that she would ever be called to donate was slight. Then it happened. The registry contacted her for further testing. Lo and behold, she was a perfect match! She flew to a Detroit hospital and spent a few hours in the operating room. The doctor pushed a coring/extraction tool into her pelvis and drew out marrow many times. She spent a night in Detroit and flew back to Wisconsin. She had swelling across her lower back for over a week. It sounds uncomfortable and inconvenient. I thought her marrow would be drawn at a local hospital. I didn’t realize she would need to travel. It would have been far easier to say no. Thank God, she said yes. No matter where life takes her she will always have the certain knowledge that she saved a life. What does that feel like?
Oh, by the way Kelly and her family are delightful people. They invited Steve and me over for a cook out Sunday, which happened to be my birthday. We chatted and laughed. They surprised me with homemade birthday cake and sang happy birthday. It was a perfect endnote until I meet my lifesaver again.
Sometimes I wonder if I share too much. Is it necessary for me to reveal my most private issues like social anxiety?
I wrote this months ago and I didn’t post it to the blog. Why? Sometimes I wonder if I share too much. Is it necessary for me to reveal my most private issues like social anxiety? Well, after some thought I have decided yes it is necessary. This blog is about self-discovery and pushing myself to be a more self-aware person so here goes.
Recently the local TV station, WMCT-TV, interviewed me. I had done a couple of newspaper interviews about climbing Kilimanjaro, but this was the first TV spot. Of course, climbing Mt Kilimanjaro is not remarkable on its own; many people climb Kili every year. The fact that I did it eighteen months after a Bone Marrow Transplant makes it noteworthy. Also raising money for the Leukemia and Lymphoma Society gives the story another wrinkle. I was surprisingly relaxed about appearing on camera. It is easier to talk to a camera than a flesh and blood human being. No stress about remembering a name or saying the wrong thing. I have social anxiety, which most people would find hard to believe. I hide it well I think. On the surface, I try to smile and concentrate on what people are saying. On the inside, I have nagging fears. I am sure I will call someone by the wrong name or misspeak and offend them. It is a constant drumbeat of doubt and it can be exhausting. It would be easier to stay home, but I do not want to be a hermit.
I enjoy forming meaningful relationships with people. It’s the struggle of small talk that bedevils me. I want to know what you love to do; what brings you joy? What do you fear? What makes you laugh? Tell me about your life experience. We are all products of our upbringing and events. What makes you, you? Of course, you can’t delve into the inner workings of someone’s mind until you know them a bit. Some people I would rather not get to know better (being honest). Hence the need for small talk. You have to dip your toe in the water before you decide to dive in. Therefore, I push myself to meet new people and socialize. I know I sometimes come across as standoffish (is that a word?) or conceited. That is not the case. I feel insecure approaching strangers.
Recently, my stepson Chris got married to his sweetheart Bri. I have met Chris and Bri’s friends several times at various parties. Even though I know their friends, I’m extremely hesitant to call them by name. The entire reception I don’t think I addressed a single person by name. The drumbeat of doubt continually pounds away. You’ll say the wrong name or something inappropriate, you’re going to offend someone says the negative ninny in my mind. I smile, socialize and pray I don’t have to introduce anyone. I told my husband years ago “Don’t wait for me to introduce you, just stick your hand out and say hi I’m Steve. If you wait for me to make the introductions, you’ll be waiting a long time.” It can be awkward at times, but I can’t seem to get over it.
Back to my rising star of celebrity. I have been asked to speak at the Rotary Club about my experience battling leukemia and climbing Kilimanjaro. A second ago, I said I have social anxiety so you might think public speaking would be an issue right? I know people that have heart palpitations when they think about public speaking. It doesn’t bother me; in fact I enjoy it. I have an interesting story to tell and I want to raise awareness of blood cancers. When you’re in front of people there is no personal interaction. You are talking at them, not with them. No small talk, no names to remember. I’m looking forward to it.
All told, I have done two newspaper pieces, one TV interview and now an upcoming speaking engagement. Oh yes this cancer gig is working out for me. I’m a celebrity in my own mind. Can fame and fortune be far behind?
Apparently, I have entered the whiny cranky phase of my cancer journey. Lately I have been feeling down because of the aftermath of treatment. I had a bone density test last week and the results are Osteopenia. I’m not yet 55 and I already have degeneration of my bones. Chemotherapy and Prednisone, which I was on for an extended amount of time, are the culprits.
My feet have been bothering me since I returned from Kilimanjaro and my knees have been killing me for 2 or 3 weeks. All of this makes me feel old and vulnerable. Should I buy my walker now or wait until I fracture my hip? Come to think of it, I have a walker in the closet. It’s good to be prepared. When I first got out of the hospital, I was so happy to be alive nothing else mattered. Well the bloom is off the rose. Now I’m coping with the repercussions of treatment. In addition to having Osteopenia, I am at an increased risk for both breast and skin cancer. Great, something to look forward to.
While wallowing in self-pity I went on the LLS web site. I participate in several online groups so I was looking for someone to commiserate with. Instead, I found a woman with the exact same leukemia as me. Her name is Miranda. She was diagnosed in January with Acute Myeloid Leukemia with the FLT3 genetic mutation. The FLT3 mutation increases the chance of relapse exponentially. She was looking for someone who could relate to her situation. Miranda has relapsed and the hospital will readmit her Monday. She will undergo grueling 7&3 induction chemo (intravenous chemo 24/7 with additional chemo the first 3 days) again. Hopefully, this will put her cancer into remission. The doctors are searching for a bone marrow donor, which is her best chance of survival.
Her post brought me to tears. Steve was surprised to find me in the kitchen staring at my phone and weeping. Suddenly everything came flooding back. You have AML with FLT3. That statement changed my life forever. When the doctors explained what it meant I was scared out of my mind. Instantly I am reminded how well things have gone for me.
After that devastating diagnosis, everything went my way. First, I had the good fortune to live near Mass. General, a world-class medical institution. Induction chemo successfully subdued my cancer into remission the first time. If the cancer doesn’t go into remission they up the chemo dosage and repeat the treatment which would be horrible. Miraculously I had an unrelated 100% matching bone marrow donor. That saved my life. Without a donor, my chance of relapse was extremely high. I have had few complications from the transplant. Only minor issues that are manageable. I consider myself exceedingly lucky. In fact, I am the luckiest person I know.
Working out in the hospital5 months after Bone Marrow TransplantHome after the first round of chemo
A couple of weeks after I returned from Kilimanjaro I received two unexpected yet welcome pieces of mail. First, a note of encouragement from a retired oncology nurse. This woman doesn’t know me. I assume she read my story in the local paper. She congratulated me on my recovery and urged me to keep it up. I’m touched that she would think about me in the midst of her busy life. She has confirmed what I already knew; nurses are extraordinary people. Oncology nurses in particular have a special calling. They work incredibly hard caring for critically ill people. Some patients, like me, can be a pain in the butt. I think I’m funny, but I’m not sure the nurses always agreed.
She also sent me a graphic that said, “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Yup I agree with that. There is no sense waiting around for things to happen. You can enrich the life you’re living today. No matter what the circumstance you can get out of bed in the morning with goals for the day. When I finally came home from the hospital, my goal was to walk ten steps further than I did the day before. My first day I walked from the car to the kitchen, and then I needed a rest. It was about 10 steps so I figured the next day I would double the distance! Kilimanjaro was not on my radar screen I promise you that.
Did I have a great positive attitude every day? No. Somedays I cried, whined, and felt sorry for myself. That usually passed quickly since nobody wants to listen to me whine, especially me. Many days I was extremely frustrated with my progress. That feeling persists today. I still have issues with fatigue and memory. I can’t remember if I used to have a good memory, but I think I did. Ugh, I’m getting tired thinking about it. I question if I will ever completely recover. All I can do is try my best. The only thing I control is my attitude.
Back to my unexpected correspondence. I also received a letter from The Leukemia and Lymphoma Society. They want to give me an award!? LLS funded the research that saved my life. I feel like I should give them an award. Honestly, it baffles me. I’ve done a couple of fundraisers for LLS. That’s it. What I have done for LLS pales in comparison to what they have done for me. In addition to life saving research, they provide online discussion boards, which have been extremely helpful to me. They offer more patient services than I can list here. In the future, I would like to motivate others to fund raise, but to date I’ve done little. Well I intend to accept my award graciously however undeserved it seems to me. Who am I to argue?
I had just dropped my luggage on the kitchen floor after traveling 22+ hours home from Tanzania. I was badly in need of a shower and a nap, but instead I called Laurie’s son Brian and asked if I could come visit.
“I don’t know how to say this or when is the right time so I’m just going to say it. Laurie is much worse, her cancer has spread, you need to call Brian. Honey it’s really bad.” My Husband said the moment we entered the house. I had just dropped my luggage on the kitchen floor after traveling 22+ hours home from Tanzania. I was badly in need of a shower and a nap, but instead I called Laurie’s son Brian and asked if I could come visit. Steve and I drove to New Hampshire to visit my childhood friend of 48 years. Laurie was entering the end stage of her earthly life, although I would not believe that for another week.
Four days prior, I stood on the summit of Mt. Kilimanjaro. I had achieved both of my lofty goals: raise over $10,000. For LLS and climb Kili. Eighteen months after enduring a brutal chemo regimen and a bone marrow transplant, I slammed the door on Leukemia. Cancer was in the rear view mirror as far as I was concerned. I returned home full of confidence, my customary optimism front and center. I could handle whatever life threw at me, or so I thought. My celebratory mood was short lived.
We arrived at Laurie and Ken’s house Thursday afternoon. Only immediate family were there; Laurie’s parents, two children and husband Kenny. We went to the living room and talked with Ken and Tom (Laurie’s dad) for a bit. Shortly thereafter Kenny’s two older children arrived. One of the beautiful characteristics about Laurie was her loving acceptance. Ken had two children by two different women when he and Laurie started dating. She was unperturbed by their existence. Beyond that, she completely accepted and loved them. Remarkable. Anyway, we stayed in the living room and talked. I was anxious to see Laurie, but sensitive that this was precious time for her family. Before too long I was able to enter the darkened room where Laurie was lying in a hospital bed. We talked for a few minutes, nothing earth shattering. I mentioned our grade school days, and then asked her if she had the strength to keep fighting. She looked me in the eye and said, “Yes I’m going to fight just like you did, I am still fighting.” She tired quickly. I know all about fatigue so I took my cue and said goodbye. It was time for us to leave. I felt that we had imposed on family time already. “I know you will have relatives visiting all weekend. Would it be possible for me to stop in early next week?” I inquired. “Yes of course” was the kind reply.
I returned alone, the following Tuesday. Again, her family allowed me to spend valuable time with her. Kenny and I went in together. Laurie was in and out of consciousness. Kenny left us alone and I lay in the bed next to her and held her hand. She recognized me and we exchanged a few words. Even though her condition had deteriorated, I still believed she could recover. Her breathing was strong and regular. I remarked on it and she humored me, “yes I’m doing well” was her response. Yvonne, Laurie’s oldest and closest friend arrived. I know Yvonne well, but my connection to her has always been through Laurie. It was time for these dear friends to be alone. I surrendered my spot on the bed. As I stood by her bedside, stroking her hair and saying goodbye Laurie looked at me and said, “I’m sorry.” I was stunned. “Laurie you have nothing to apologize for” I assured her. Those were her last words to me. She knew the end was near and she was concerned about me. I was notified of her passing Thursday morning.
The wake and the funeral were beautiful. Several people, including Yvonne spoke eloquently at the wake. There were some good laughs. Laurie had a tremendous sense of humor and she loved to laugh. I felt terribly conspicuous. Everyone knows that I survived cancer. Was my presence an ugly reminder of life’s capricious nature? Would her family resent seeing me? It would be natural to wonder why I lived and Laurie died. I wondered myself. Why was Laurie taken from us? It made no sense. I survived a cancer that kills 74% of adults that are afflicted with it. Laurie succumbed to breast cancer. Why?
Don’t misinterpret my words. This is not survivors’ guilt. I am profoundly grateful to be alive. I understand exactly how fortunate I am and how miraculous my recovery is. For a long time it was all about me. My survival. My recovery. My triumph over cancer. Suddenly I need to develop a coping mechanism for the loss of a friend. This is hard. My post cancer life is complicated. So this is Life after Leukemia as well, learning to deal with people you love dying from cancer.
Can an Acute Myeloid Leukemia survivor, Bone Marrow Transplant patient with Alpha-1 antitrypsin deficiency summit Mt. Kilimanjaro? We have an answer and the answer is YES! Here is the story of my Mt. Kilimanjaro adventure.
Can an Acute Myeloid Leukemia survivor, Bone Marrow Transplant patient with Alpha-1 antitrypsin deficiency summit Mt. Kilimanjaro? We have an answer and the answer is YES! Here is the story of my Mt. Kilimanjaro adventure.
After training and mentally preparing for 5 months for Mt. Kilimanjaro, it is finally time to get started. I fly out with my team Friday March 17. The travel time is 17+ hours finally arriving at Bristol Cottages in Moshi Tanzania Saturday. I have a peaceful nights rest ending with the Muslim call to worship early Sunday morning. The nearby Lutheran church serenades us throughout the morning. The people of Tanzania have beautiful singing voices.
Monday morning it’s on! We pack ourselves and our equipment into a bus and head out. To reach our starting point we have a four-hour drive through farmlands and continually worsening roads. Along the way, we stop for a washroom break. Lead guide Wilfred and I stand in the parking lot and discuss religion. We are both people of deep faith. He tells me the story of the Massai, a people with no land allowed to inhabit any land they choose. My understanding is imperfect due to our language difference, but it sounds like he is telling me the Massai are one of the original twelve tribes of Israel? Eventually, we are deposited at the Londorossi gate of the Tanzania National Park. We eat a box lunch and begin the climb.
Day 1: Londorossi Gate to Mt. Mkubwa
Elevation: 7,800ft to 9,500ft
Distance: 6 km •Hiking Time: 3‐4 hours •Habitat: Rain Forest
The weather is perfect! It is a lovely hike through forest. No rain in the rain forest. Imagine that. We see many monkeys, both Colobus and Blue Monkeys. Colobus are Black and white and look rather like long tailed skunks up in the trees. On our arrival to camp spirited singing by our guides/porters greets us. It is a magnificent opening to our trip. Once again, the musical abilities of the Tanzanian people strikes me. A delicious dinner and restful sleep completes the day.
Day 02: Mt. Mkubwa to Shira Camp 1
Elevation: 9,000ft to 11,500ft
Distance: 8 km •Hiking Time 5‐6 hours •Habitat: Moorland
We break camp at 8:30am and begin the days hike in the forest. We see more monkeys in the trees. The rain forest gives way to tall grasses, heather and scrubby chest high growth. As you ascend the mountain, the vegetation becomes shorter and sparser. Today’s hike is a gentle ascent over rolling hills up into the moorland. We begin to see more boulders of volcanic rock. Another day of brilliant weather. Puffy white clouds against bright blue sky. When we make camp at Shira 1 it is slightly cooler than the previous night as you would expect at higher elevation.
Day 03: Shira Camp 1 to Moir Hut
Elevation (ft): 11,500ft to 13,800 ft
Distance: 14 km •Hiking Time: 5‐7 hours •Habitat: Moorland
Today’s hike across the Shira plateau is beautiful. Once again, the weather is breathtaking. We walk a well-worn path among boulders of varying sizes and low growing wild flowers. Unfortunately, my health takes a sudden turn for the worst. I find myself dashing behind boulders because of a bad case of the trots. No problem. I have Imodium with me. Ever since Chemo I have intermittent bouts of diarrhea. Imodium always works at home. Despite not feeling well, I still enjoy the beauty of my surroundings and the companionship of my hiking friends. By the time we get to camp, I have to confess to the head guide my dilemma. “No problem” Augustine reassures me. They deal with this often. They’ll serve me rice and bread for dinner. That should help.
During the night, I get the dry heaves. I spend the entire night running to the restroom, dry heaving and vomiting bile. My tent mate Christine gets very little sleep. I feel bad about that however; I am at the mercy of my intestines. It is obvious I have bacteria in my gut. This is exactly what my nurse Julie feared and warned me about. With my still compromised immune system, I can easily catch illnesses of every description. That’s why they sent me with several prescriptions. I take Cippro with breakfast and the trots immediately resolve. I don’t know why I didn’t take it sooner other than I didn’t want to ingest it on an empty stomach. I have extensive experience with Cippro and it bothers my tummy.
Day 04: Moir Hut to Lava Tower to Barranco Camp
Elevation (ft): 13,800ft to 13,000ft
Distance: 7 km •Hiking Time: 4‐6 hours •Habitat: Semi Desert
After breakfast, I tell the lead guides Augustine and Wilfred that I am taking Cippro and feeling better already. They are uncertain as to whether I have altitude sickness. I try to reassure them that I have bacteria in my gut and the Cippro will cure it. We have a slight language barrier and I can’t quite seem to get through to them. They insist that I drink plain water so they can judge whether the Cippro is working and not the electrolytes. “No No I can’t drink plain water first thing in the morning, it will make me sick,” I protest. They do not understand my point. Plain water it is.
An hour into the hike a sudden bout of projectile vomiting grips me. All the fluids that I took in that morning exit my body without warning. I assure the guides I can go on. An hour later, it happens again. The guides send the group ahead and have a sit down with me. They are deeply concerned. I promise them that the Cippro will work. I try to explain about my compromised immune system and my experience with stomach bugs, but we have a bit of language difficulty. Finally, I convince them I’m good to go. I manage to make it to lunch. I eat and take Cippro convinced that my problems will be behind me soon. As soon as I exit the mess tent, I vomit again. No warning. Right in front of the entire group. I can see the guides are questioning my optimism about the Cippro.
The rest of the day is a gorgeous hike past a rock formation called the Lava Tower. We see some fantastic plants and no more sickness for me. This is a longer hike today and by late afternoon, I am drained. Two days of illness and no sleep the previous night have me feeling completely depleted. I suspect that we will never reach camp. When we finally make it, I flop into my tent. Augustine and Wilfred check on me. I confess that today was a challenge for me. I only got through it with prayer; “Please Jesus if you can pick my feet up I can put them down.” They got a kick out of that. I know they are men of faith as we have discussed it previously. I ask them if I can have some toast for dinner in my tent. Tea and toast for dinner, then I pass out. It is the best night’s rest I have ever experienced! I sleep straight through and wake up refreshed.
After Breakfast and another dose of Cippro we leave camp and climb the Baranca wall. It is super cool. I have heard that the wall can be challenging and if you are afraid of heights, it could get to you I guess. For me it is good old-fashioned fun. Like when I was a kid climbing on rocks. After the wall, we descend into a valley and climb back up the other side. I feel great and todays hike is short. Plenty of time to rest, which I need, fatigue is setting in. No illness though, just my usual fatigue. I’m relieved to be my old self again.
Day 06: Karanga Camp to Barafu Camp
Elevation (ft): 13,100ft to 15,300ft
Distance: 4 km •Hiking Time: 4‐5 hours •Habitat: Alpine Desert
After breakfast, three of us are pulled aside to speak with the head guides. First Maria and Jason speak with Wilfred and Augustine, then it’s my turn. I assume they want to touch base and make sure I’m feeling well. Imagine my surprise when they tell me I won’t be going to the summit. “What” I exclaim. “No No NO. I’m fine. My stomach issues have cleared up and I’m good to go.” They exchange worried glances as if to say we knew this one would be trouble. Unfortunately, they have conveyed how sick I was to Freddie in the office. The decision is out of their hands. Well let’s call Freddie I say. I will speak to him myself. We have to find the hot spot for cell service, and then Wilfred calls Freddie. They speak briefly in Swahili and Wilfred hands the phone to me. “Look Fred I do not have altitude sickness. I got bacteria in my gut, I’m taking Cippro and I haven’t been sick in 36 hours. No nausea or diarrhea” I say firmly. It is a small deception. I do feel nauseous, but intermittent nausea is a part of my life since Chemo. There is no way to explain that to him. Freddie decides that he will leave the decision up to the guides. I hang up the phone and stare Augustine and Wilfred in the eyes. Your call guys, you have to let me try. They agree to let me go on. It is a risk for them. I was terribly sick and if something bad happens to me on the mountain, they will be accountable. I appreciate them taking a chance on me.
When I return to the hiking group, there is surprise and celebration that I was able to talk my way out of that jam. Christine hugs me with enough force to crack my rib. It’s my turn to be surprised. Did you guys really think I would be turned back? No way. I say a tearful goodbye to Maria and Jason and rejoin the group. Today’s hike is short and easy. We ascend to the Barafu camp at 15,300ft. It looks like a moonscape. Barren earth dotted with boulders. This is where we will make our final assault on Kili.
Day 07: Barafu Camp to Summit to Mweka Hut
Elevation (ft): 15,300ft to 19,345ft (and down to 10,000ft)
Distance: 5 km ascent / 12 km descent •Hiking Time: 7‐8 hours ascent / 4‐6 hours descent •Habitat: Arctic
We arrive at Barafu camp in time for lunch and then we attempt to nap. We have our final gear check, they feed us dinner and we try to nap again. Altitude affects my appetite. Ever since we reached 13,000ft I have struggled to eat. Every day I do the best I can to shovel food in, but nothing appeals to me. Today is no exception. I know I need the calories, but I can’t clean my plate. I have definitely lost weight this week. 11:00pm is the wake up time. We get dressed and prepare to climb. We hit the trail at midnight. It is cold and dark with a light breeze as we ascend a rocky slope. After climbing for a couple of hours, I start to question my sanity. It is dark, cold and dull. We are plodding along like robots. Why did I want to do this again? This time I pray, “Lord can you pick my feet up and put them down?” I continue one foot in front of the other. When the sunrises behind my right shoulder it provides a much-needed shot of encouragement. I turn to look at the sunrise from above the clouds. An orange crescent moon still hangs low in the sky as the sun climbs the clouds. The tops of the clouds reach upwards like ghostly trees. It is beyond description. The warmth propels me forward. We ascend through heavy scree to Stella point (18,600 ft) on the crater rim. After a brief break, we continue on to Uhuru peak (19,345ft). Another hour of hiking before we reach the summit at 7:45 am. I am the first to reach the sign. I don’t know why this is important to me, but when I see the sign I hustle to get there first. I sit on the base of the sign and breakdown. Leaning my forehead on my pole handles, I weep until one of the guides lays his hand on my shoulder and says, “No crying it takes too much energy.” He is right. I gather myself together and that closes the door on my cancer journey. Leukemia is in my rear view mirror now. I become aware that Brian is sitting next to me also crying. “I don’t know why I’m crying,” he whispers. I put my arm around him; the only thing I can do. We stay at the summit for a brief time. Long enough for photos and a quick celebration. Then we descend back down to Barafu camp. I’m exhausted on the way down. We eat and nap briefly in camp then continue our descent straight down the mountain for another 4-5 hours. The trail from Barafu to Mweka camp is rough and rocky. I struggle to keep my feet under me and not take a tumble. Finally, I stumble into camp. I manage to keep my eyes open long enough to eat dinner. I collapse in my tent, grateful for some rest. As I drift off, I reflect on what has happened. Eighteen months after a Bone Marrow Transplant I climbed Kilimanjaro.
Day 8: Mweka Camp to Gate
Elevation (ft): 10,000ft to 5,400ft
Distance: 10 km •Hiking Time: 3‐4 hours• Habitat: Rain Forest
After breakfast, we continue the descent down to the Mweka Park Gate. This section of the trail is smooth and feels effortless. I have some time to talk with Steve my guide/porter. I’m glad to spend leisure time with him. Steve has been incredibly helpful to me this week. I have come to lean on his judgement and his physical strength. He has been in this business for seventeen years and regales me with stories of the old days. The porters used to sleep in caves and cut grass for sleeping mats. They carried ridiculously heavy loads and any injury could end their career. It sounds like slave labor to me. I’m glad they have better working conditions now, but it is still incredibly taxing work.
We reach the exit of Kilimanjaro National Park. It’s a short ride to an open air restaurant where we eat lunch and have the closing ceremony. The men sing to us once again. They have remarkably beautiful voices.
I did this because I had something to prove to myself. I am not sick or weak. I have recovered from Leukemia. A Bone Marrow Transplant will not hold me back. I motivated people to give money to LLS. I feel encouraged about my future. There truly is life after leukemia.
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 4th. 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.
Impressive makeupMy team and I
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/
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.
