It’s Complicated

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.

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Laurie and Ken in Puerto Rico

 

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Costa Rica Vacation
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Dancing?

 

 

 

 

 

 

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Puerto Rico vaca with Laurie and Ken

 

The answer is YES

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.

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 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.

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The beginning

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The Lava Tower
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Wild flowers

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Kili in the distance
Moonscape
From here we summit

 

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