grateful – Life after Leukemia

Grand Canyon

Grand Canyon Camper Village, Arizona

May 5 days

The drive from Zion to GC is monotonous. It consists of two-lane minor highways through scrub brush and desert. Eventually we roll up to the South entrance of the national park. We received the traditional park brochure and a pocket map which came in handy. After we set up camp we went to a few observation points. The Grand Canyon lives up to its name. We are bowled over

Friday morning, we rode our bikes to the South Kaibob trail head. You can ride bikes on the rim of the canyon! It is amazing. We stopped for some scenic vistas; however, I am enthralled with riding next to the canyon. It’s so exciting to pedal along and right next to you is the expanse of the canyon. We rode from the S Kaibob trailhead to Mather Point which has exceptional views. Afterward we rode to the village and stopped for lunch. We both had a beer to accompany our meal. With the hot sun and exercise the beer finished us for the day. We both needed a nap.

Saturday, we took the truck out to Desert View Watchtower and the Tusayan ruins. The Watchtower, designed by Mary Colter in 1932 is 7 stories high. The tower blends with the surrounding landscape perfectly. The interior is adorned with Indian motifs. It is free and completely run by volunteers. In the afternoon, we hopped on our bikes to do a little exploring. We rode around the park and thanks to my excellent navigation ended up in a residential area that is not on the handy pocket map. Well, we found our way back to the campground eventually. In the evening, we went out to watch the sunset and stargaze.

Sunday, we rode our bikes all the way to Hermit’s Rest, about 13 miles one way. It was a long ride, and I was grateful for our e-bikes. I usually start the day full of ambition and pedal without the electric assist. As the day goes on, I rely more and more on the electric power. Once again, we took a wrong turn on the way back and found ourselves in the residential neighborhood. By the time we got back to the camper my legs were useless and I was fully dependent on the bike.

Monday, we had no plans other than not riding bikes. We decided to go to the IMAXX theatre and see “Rivers Of Time.” The movie portrayed the geologic formation of the GC, the history of the indigenous people and the exploration of the GC by the settlers. It was outstanding. I am amazed by the first navigation of the river. They had no idea what was in front of them. They loaded up dories and set out. 3 men quit the journey and attempted to hike out. They were never heard from again. The men that stayed with the boat trip made it to the end of the canyon.

Afterward, on our way to get gas, we drove by Grand Canyon Airport. We revisited the idea of taking a helicopter tour of the canyon. We had batted this idea around all week. Steve had reservations about the expense. I felt it was intrusive and a bougie thing to do. Still, it looked fun, and we were right there. What’s the chance they would have an opening that afternoon? Turns out the chances were good. They had availability in an hour. We got over our reservations pretty damn quick. We went on that helicopter tour and I’m glad we did. When the chopper drops over the lip of the canyon it is spectacular! We ended our GC experience with a bang. (figuratively speaking)

Throughout our stay elk wandered into the campground almost daily. It was quite a treat to drink my morning coffee with elk grazing outside the window. Tomorrow, we begin the journey home.

On the Road Again

Spring 2025

Ricketts Glen SP, Pennsylvania

Day one of our cross country trip. Surprisingly I booked the first night of the trip in the boonies. After what seemed like a lengthy back road journey we found the campground OK, but we got lost on the way to our campsite. I had to turn the camper around on a dirt road. So typical, Steve and Gayle driving around in circles. Not the most auspicious start. Eventually we got set up. One night and we’re on the road.

Shenandoah River SP, Virginia

This is a beautiful park. I wish I had planned more time here. There are more than 1600 acres along 5.2 miles of the Shenandoah river. Hopefully we’ll be back someday. I’m anxious to put miles toward the Grand Canyon so it’s a quick stop.

Warriors Path SP, Tennessee

May 3 nights

Tennessee has spectacular parks, and this one is a dilly. We had a couple of days to relax and recreate. After unpacking the bikes we went for a ride around the property. We found the marina and agreed to come back the next day and rent a canoe. In the afternoon my hike is blessed with a snake. I like snakes so a big black racer stretched across the path made my day. I hung out with her for a while before moving on. Thursday, we rode our bikes to the marina and rented a canoe. It was delightful. We had a leisurely paddle on the Holston River. Gliding along the shore we met up with a deer family. They were unconcerned with us. We happily floated alongside them, before heading back to the marina.

The afternoon was hot, temps well into the 80’s. Our little camper is dark blue and holds heat very well. No problem. We turned on the air conditioner. Problem. No air flow. We quickly determined the fan was not working. I climbed on the roof to investigate. I found a bird’s nest firmly lodged in the fan, complete with small, speckled eggs. I had to dismantle this carefully constructed creation. What else could I do? The Momma is back in Massachusetts wondering what happened to her home. Anyway, the problem was solved. Tomorrow we’ll be on the road with a functioning AC.

Campers RV Park, Tennessee

May 2 nights

Driving to the campground we got caught in a torrential downpour. Fun. Who doesn’t enjoy driving in a monsoon. Saturday, rain, and more rain. No matter, I had scheduled a workday. Laundry, errands and trip planning. I made reservations for the next 2 weeks. That completes the trip through the Grand Canyon. I still need to figure out the way home.

H & G RV Park, Arkansas

Shake rattle and roll. The highway to Arkansas was rough. Little blue got shaken up. When we arrived at the camp we found knobs and screws strewn about. One of the kitchen drawers was off track. It took several minutes to repair. We’re hoping the mickey mouse repair lasts through the trip. We’ll see. A quick night here, we didn’t even unhook. The fun stuff starts tomorrow.

Sequoyah SP, Oklahoma

May 2 nights

This is a superb campground. It is quite large. We drove a couple of miles from the entrance to our site. Due to the early season there were very few campers. There had been a considerable amount of rain and some of the park was flooded. Neither the marina nor the golf course were open. We still found plenty to do. We rode our bikes all around the roads and trails. We saw deer, turkey vultures and assorted wildlife.

Boiling Springs SP Oklahoma

May 3 nights

Another tremendous park. Not as large as Sequoyah, but interesting. Many of the buildings as well as the lake were constructed by the CCC in the 1930s. There is a small spring bubbling up that lends the park its name. The spring is not very exciting, but that’s alright.

We were the sole occupants for the first couple of days so that was fun. We explored every inch of the place on our bikes. One night we found a bar in town that had the Celtics playoff game on. We ate and drank too much while the Celtics blew a 20 point lead to lose in the end.

We had enough time to go to Gloss Mountain SP for a hike, which was not too strenuous, but very scenic. A short steep ascent brings you to a wide flat plateau with views for miles. We saw a couple of “Mountain Boomer” lizards and the buzzards circled overhead waiting for us to drop. Not this time!

Willow Springs RV, New Mexico

A quick 1 nighter on our way to Colorado. Just off hwy 25 this place is fine for the night, but nothing tempts us to stay longer. We’re excited to be heading into Colorado. Now we feel like we’re making progress.

What 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?

Missing-Brain-Jigsaw-Puzzle-Prismatic — 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.

image of Christ

The Whiny Cranky Phase

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.

Who am I to argue?

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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?

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