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
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.
Is it possible for an Acute Myeloid Leukemia survivor, bone marrow transplant patient with Alpha-1 Antitrypsin Deficiency to climb Mt. Kilimanjaro? We are about to find out. I leave today (St. Patrick’s Day) for Tanzania. I’m ready to go. I’ve done everything I can to prepare. My team has gone on many training hikes. I’ve spent hours at the gym doing cardio and lifting weights. Purchasing essential and nonessential supplies is complete. Every day I find one more item that I must have. My luggage is about to burst. Wish I were there right now. The plane ride is 17+ hours. Youch! We have a day to recover from the arduous journey and then we begin the climb.
Here is a quick synopsis of the hike:
Day 1: Londorossi Gate to Mt. Mkubwa
Elevation (ft): 7,800ft to 9,500ft
Distance: 6 km
Hiking Time:3‐4 hours
Habitat: Rain Forest
Depart Moshi for Londorossi Gate, which takes about 4 hours. With flora and fauna heavier and richer, here than on any other route through the thick rainforest, the Lemosho Route cuts through underbrush that is so untouched it at times grows right across the narrow trail. After three to four hours, we’ll reach our camp, Mt. Mkubwa, which means “Big Tree” in Kiswahili.
Day 02: Mt. Mkubwa to Shira Camp 1
Elevation (ft): 9,000ft to 11,500ft
Distance: 8 km
Hiking Time 5‐6 hours
Habitat: Moorland
We continue on the trail leading out of the forest and into a savanna of tall grasses, heather and volcanic rock draped with lichen beards. As we ascend through the lush rolling hills and cross several streams, we reach the Shira Ridge before dropping gently down to Shira 1 camp. The view of Kibo from across the plateau is amazing.
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
We explore the Shira plateau for a full day. It is a gentle walk east toward Kibo’s glaciered peak, across the plateau, which leads to Shira 2 camp on moorland meadows by a stream. Then we continue to Moir Hut, a little used site on the base of Lent Hills. Shira is one of the highest plateaus on earth.
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
From the Shira Plateau, we continue to the east up a ridge, passing the junction towards the peak of Kibo. As we continue, our direction changes to the South East towards the Lava Tower, called the “Shark’s Tooth.” Shortly after the tower, we come to the second junction, which brings us up to the Arrow Glacier at an altitude of 16,000ft. We now continue down to the Barranco Hut at an altitude of 13,000ft. This day is very important for acclimatization and will help your body prepare for summit day.
Day 05: Barranco Camp to Karanga Camp
Elevation (ft): 13,000ft to 13,100ft
Distance: 5km
Hiking Time: 4‐5 hours
Habitat: Alpine Desert
After breakfast, we leave Barranco and continue on a steep ridge passing the Barranco Wall, to the Karanga Valley campsite. This is a short day meant for acclimatization.
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, we leave Karanga and hit the junction, which connects with the Mweka Trail. We continue up to the Barafu Hut. At this point, you have completed the South Circuit, which offers views of the summit from many different angles. Here we make camp, rest, enjoy dinner, and prepare for the summit day. The two peaks of Mawenzi and Kibo can be seen from this position.
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
Very early in the morning (midnight to 2am), we continue our way to the summit between the Rebmann and Ratzel glaciers. You head in a northwesterly direction and ascend through heavy scree towards Stella Point on the crater rim. This is the most mentally and physically challenging portion of the trek. At Stella Point (18,600 ft), you will stop for a short rest and will be rewarded with the most magnificent sunrise you are ever likely to see (weather permitting). From Stella Point, you may encounter snow all the way on your 1‐hour ascent to the summit. At Uhuru Peak, you have reached the highest point on Mount Kilimanjaro and the continent of Africa. Faster hikers will see the sunrise from the summit. From the summit, we now make our descent continuing straight down to the Mweka Hut camp site, stopping at Barafu for lunch. Later in the evening, we enjoy our last dinner on the mountain and a well‐earned sleep.
Day 8: Mweka Camp to Gate
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 to receive our summit certificates.
Well that sounds reasonable. Now for the doing. Only one way to find out what is possible and that is to try. I wasn’t sure I would be able to reach my $10,000.00 fundraising goal. I have surpassed it. If you feel like you are losing faith in humanity; don’t. People are kind and generous.
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.
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 4th. Concert in Your Living Room is Feb 18th 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.
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!
