Brentuximab | Brentuximab Chemo 2018 | Cancer-- Non-Hodgkin's Lymphoma

Cancer Update 05-22-2018

May 22, 2018

May 1, 2018 Tuesday

Today finds Mom and I traversing a lonely, desolate stretch of Wyoming highway. Speed limit is 70 on a two-lane highway and there is little more in sight than horses and cattle and the occasional ranch house. We are traveling north on US Highway 85 toward Rapid City, South Dakota. We slept last night in Cheyenne, Wyoming. We made 2 sight-seeing stops today in Wyoming: Register Cliff and the Oregon Trail Ruts. Register Cliff is where many of the pioneers on their way to Oregon carved their names and dates into a sandstone cliff. The ruts are deep ruts that the Conestoga wagons wore in the dirt and sandstone over the 70 years the trail was in use.

To think that Mom and I crossed over half the country in only a few days, and it took them 6 months or more to travel from the Mississippi River to Oregon or California! They loaded their most precious possessions in Conestoga wagons, sold the rest, and headed west. The wagons were full and too heavy, especially once they hit the mountains, and horses too tempting for Indians to steal, so most of them walked beside the slow oxen all those miles to Oregon.

Our trip has gone very well so far. Thursday, we left Illinois around 10 am and headed west for Missouri and Kansas. I always think of Kansas as flat, with miles and miles of farmland. It’s not, at least not the eastern part of the state. The land was rolling and much of it looked kind of scrubby and dry. We slept in western Kansas that night. I loved the beautiful sunset. Lancaster County has too many hills and trees that block the sunsets. I’ve always loved western sunsets!

The next morning we finally saw the Kansas we were expecting: miles and miles of the flattest farmland you can imagine! Irrigation rigs, grain legs, and grain elevators and more grain elevators and more grain elevators! Also, wind turbines, lots and lots of wind turbines, their giant arms outlined against the gorgeous sky. The sky that day was the clearest blue you can imagine, not a cloud in site! The land and sky went on forever to meet way in the distance on the horizon.

As we entered the flat, flat, empty land, I felt my spirit take a deep breath and let it all out in a long sigh. I forget how much wide-open spaces and natural beauty calms and centers me until I leave crowded, noisy, busy Lancaster County.

 May 13, 2018 Sunday

Today, Mom and I are headed east on the last leg of my journey. I hope to arrive home tonight.

Our trip went very, very well over all. I handled it a lot better than I thought I would, for which I am grateful. I was able to enjoy our sightseeing while expending a minimum of energy, thanks to the research I had done beforehand to make sure nothing was too strenuous for me. Mom did the heavy-lifting: packing and unpacking the car, lugging suitcases into the motel and back out the next morning, and carrying extra batteries for my concentrator during our sight-seeing stops.

We visited Seven Falls and Royal Gorge in Colorado, as well as the 2 days at the symposium. I found the symposium very helpful. Mom and I had most of our sessions together as we listened to various experts in their field share their knowledge. The workshop on nutrition was helpful since I’m struggling with eating enough calories now that I’ve lowered my prednisone dosage. The dietician who spoke advised us to make sure we eat nutrient-dense foods so we get more “bang for our buck.” She also encouraged liquid calories, like shakes and protein drinks and smoothies, to get more calories in us in a day’s time.

The session on managing fatigue and improving strength was also very helpful. We were given exercise bands and papers with instructions on doing simple exercises to build strength. In that workshop, they divided us into groups and we practiced some of the exercises. My biggest problem with improving strength was that I did not know where to start with exercising. The tips and information gave me an idea how to proceed. I’m eager to get home and put it to practice.

Another workshop was on managing GVHD of the eyes. I found out that my eyes healed remarkably well after the acute ocular GVHD I had. I’m able to control the dryness with my contact lenses and eye drops. From what was said, many are left with a lot of stinging, burning, and blurriness that nothing really helps. I’m grateful mine have recovered so well.

The last session of the first day was basically a small, support group time. They divided us into groups according to similar disease or age. Mom was in a caregivers’ group with other parents. I was in a young adult group with other young women.

I think some of you erroneously thought the symposium was about finding more treatment options. It wasn’t. The whole focus on the symposium was managing long-term effects following transplant. Generally, oncologists are focused on curing the cancer, so they don’t always provide the necessary long-term follow up. I took a lot of notes, and I have a lot of questions for my doctor.

I also have a list of tests I want to be completed in the near future: a bone scan, plus thyroid, adrenal, and hormone levels. Some survivors assume that fatigue and other issues are simply long-term side effects that just have to be lived with, when, in actuality, other things are affecting their health as well. It’s only been in the last 10 years or so that the medical world has realized the need for long-term specialized care for cancer survivors, especially stem cell transplant survivors.

Seven Falls and Royal Gorge were gorgeous, as were the scenic drives we took in the mountains. The highest elevation we were at was about 10,000 feet. At the mile-high elevation in Denver, I didn’t think about my breathing being an issue at all. At 10,000 feet though, I definitely did! We had to stop at one point to use the restroom, and I was glad to sit back down in the car. I was seeing spots, a sign I wasn’t getting enough oxygen. We didn’t linger at that altitude! The mountains are so awesome! I couldn’t stop snapping pictures because no picture quite captured the awesomeness. The views were so beautiful, my spirit actually felt sated with enough beauty for once! Mom and I again and again could only say “Wow” or “Awesome” or simply be speechless at the vistas we saw.

On those scenic drives, Mom was impressed that I know how to read and use a road atlas even though I’m a millennial and used to GPS! I have GPS on my phone, but the scenic routes weren’t marked on the app I use, so I pulled out the atlas to plan our routes. Plus, my phone didn’t always have service when we were off the beaten path, so then I had to use the atlas as our guide. It was fun. I like the challenge of using a map without a computer doing all the figuring and talking for me.

We enjoyed South Dakota very much. We visited Mt. Rushmore and the Badlands. On our day at Mount Rushmore, I was so achy and exhausted. Fortunately, they had wheelchairs available for rent, so Mom pushed me while I somehow managed to drag Sam (my oxygen concentrator) along on his wheels. I had a lot of trouble with achiness on the trip, aching and sore to the point of pain. Ibuprofen helped, so I usually downed 4 tablets each morning. I’m not sure what caused all the achiness.

The Badlands were barren pinnacles of dirt and rock, but so breathtaking! I thought the pictures couldn’t capture the mountains or the gorge. However, pictures did an even worse job with these views! Some call it the Land God Forgot, or perhaps the place where God dropped all the leftover dirt and rocks after creating the earth! It used to be a shallow sea, and fossils of seashells and sea creatures are found in abundance all over the Badlands. They even found the fossils of a dinosaur that lived only in water. The description of the dinosaur reminded me of the leviathan described in the book of Job.

Of course, the visitor center displays attributed it all to eons of evolution. One display discussed evidence of a water hole where paleontologists found hundreds of fossils of animals killed suddenly and inexplicably. They said that no one knows what killed so many animals so suddenly. I smiled at their ignorance. When God is left out of the picture, life and history and nature become meaningless and unexplainable.

The Badlands area also had lots of prairie dog towns. I’d long wanted to see a prairie dog town! The prairie dog towns were huge, hundreds of dirt mounds spread out on the prairie as far as the eye could see. They’d sit on their little mounds and bark shrilly in warning, their little tails jerking furiously before diving down their holes. I even managed to grab a video!

We also stopped at the Laura Ingalls Wilder houses in De Smet, South Dakota. We enjoyed that. It helped us picture the books better and learn more about the real lives of the Ingalls family. We spent May 6 and 7 with relatives in Minnesota. Mom had been there before, but I hadn’t. I enjoyed seeing where the cousins live and getting a glimpse into their lives.

We also made two unplanned stops along our route, both in South Dakota. One was at Bear Country USA, where we could drive through various fenced in areas with different types of animals: bear, wolves, mountain lions, buffalo, bighorn sheep, mountain goats, etc. However, we also saw a number of animals in the wild: prairie dogs, bear, elk, moose, mule deer, antelope, bighorn sheep, mountain goats, and buffalo. Of course, we saw birds, squirrels, and chipmunks too.

Another unplanned stop was the Minuteman II Missile National Historic Site. This site was just north of the Badlands, so we stopped here the day after we were at the Badlands. The national historic site actually consists of 3 different sites about 10 miles apart. The one site is the actual missile. They pushed the concrete cover partially off the missile silo and covered it with a glass top so you can look down into the silo. The 2ndsite is the Launch Control Center deep underground a few miles away. The only way to see the Launch Control Center is by guided tour, and we were not able to get the tour. The 3rdsite is a visitor center with a lot of information about the missiles, the missileers, and the Cold War. I love history, so I especially enjoyed this stop.

Did you know that during the height of the Cold War the US and the USSR combined had over 65,000 nuclear warheads? Only a few dozen nuclear warheads are sufficient to mostly destroy the largest metropolitan areas on the globe and cause fallout for years, plus a nuclear winter that lasts 25 years or longer, let alone a few hundred or a few thousand warheads. 65,000? Mankind without God goes mad!

The oxygen concentrator the medical equipment supply company rented to me worked very well. Dad had rigged Mom’s car so the oxygen concentrator could hook directly into the battery. It worked very well at both running and charging the concentrator. We had 5 batteries along for it, but we never used all 5. The most we used in a day was 4. I christened him Sam because he is simply a smaller version of Samson, my big oxygen concentrator at home. Sam weighs about 18 pounds and rolled along very nicely on his wheels. Most of the time, I took advantage of wheelchair ramps and elevators so we didn’t have to lug him up and down steps too much.

Again and again, I had to marvel at what an extravagant God we have. He didn’t have to make this world beautiful. He could have provided a very gray, utilitarian, practical world that would have met our needs just as well. Instead, He gave us all we need, and more, to live on this earth, and then created all this beauty to boot! I couldn’t help but think, “If this fallen world is so beautiful it makes us speechless, what will the New Heaven and New Earth be like?” I can’t wait to find out!

Tuesday, May 8, Mom and I arrived back in Illinois at my parents’ house. Once I got there, I took my temperature. I was right. I was running a low-grade temp. My throat had been sore all day, so I knew I was coming down with something. I ran fever off and on the next two days, along with a sore throat. I suspected either the flu or a sinus infection, so I called my doctor’s office, asking them what I should do since I was 800 miles away. They advised me to go to either a local GP or urgent care.

Mom called her doctor’s office, explained the situation, and they agreed to see me Thursday afternoon. I was afraid I might need to educate the doctor on stem cell transplants and GVHD, but he turned out to be competent and knowledgeable enough. He diagnosed me with a sinus infection and prescribed antibiotic. The doctor said there has been an epidemic of sinus infections this spring due to the weird spring we all had. Everything sprouted and budded and greened up at once rather than gradually, which made the pollen count higher than normal. Hence more allergies and more sinus infections.

Once I had the antibiotic in me for 24 hours, my fever came down and stayed down without Tylenol. However, a nasty cough set in, which is what I feared. Bad sinus infections often turn into bad coughs for me.

I did a lot of coughing the next few days at Dad’s. They pulled the recliner into the playroom (since the guest rooms are up a flight of steps), and that was where I stayed for a few days. Any activity could trigger violent coughing attacks, so I didn’t move more than I had to. Thursday evening May 10 our family in Illinois got together for a barbecued chicken supper. I was able to go though I wasn’t feeling too great. I just claimed the recliner at my sister’s house too! I was glad to hold my newest niece Lorelle for a while. She’s about two months old and so precious!

On my way out to Illinois, I drove to Ohio first to where my sister lives, and then she drove me to Illinois the next day. That means my car is at her place in Ohio. However, I am in no shape to drive my car home from Ohio right now, so Mom and I are driving straight through to Lancaster County today. We decided to get me home just in case this cough gets a lot worse and I need hospitalization. We all prefer that I be hospitalized at Hershey if worse comes to worst.

So yes, my car is in Ohio for the time being. Once I’m well enough, Mom and I will probably go out for it. Or, the other option would be to have my sister run it in or meet me partway. We will see what works out.

May 17, 2018 Thursday

Mom and I arrived home around 1 am Monday morning. It is really, really good to be home. I thoroughly enjoyed my trip, but there is nothing like the comforts of home, especially the comfort of my own recliner! I’ve spent the days since recovering from my sinus infection. I finished the last dose of the antibiotic today. My cough is not as bad as it was, so it appears I am recovering without complications. Thank you, God!

I am so very, very grateful that I did not become ill during our two-week road trip. Before I left on my trip, I could tell that I was feeling slightly ill, like a sinus cold could start any day. I asked God for protection from illness so I could enjoy the trip. He answered that prayer. I did not become ill until after our two weeks of sightseeing.

Today, my legs ache like I ran a mile!! Yesterday, I started some of the exercises I learned at the symposium in Denver. All I did was 5 repetitions of 2 legs exercises, and today I can barely walk!! I knew I was very deconditioned, but I didn’t know it was this bad!! This makes me even more determined to exercise.

Today was labs, doctor visit, and treatment at Hershey. The day went well, though I did choose to ride around in a wheelchair rather than walk, partly because of my muscle soreness, partly because I didn’t want to do something that could bring on a coughing fit. He said that my cough appears to be tracheal bronchitis which is basically inflammation in the bronchi and the trachea.

We did talk about my toxicity from the Brentuximab. The neuropathy in my fingers, hands, and feet is getting worse, which indicates nerve damage which indicates increasing toxicity from the chemo. My whole hand feels slightly numb, and I’m starting to feel pain as well, mostly only a throbbing off and on with sharp pains every once in a while. Fine motor skills are becoming increasingly difficult, such as opening bottles, combing my hair, buttoning clothing, even typing. The nerve damage also affects my grip and hand strength.

The nerve damage isn’t the fault of Mr. Brent. It’s the fault of his chemo buddy Vedo (otherwise known as Vedotin). The only way to stop the neuropathy is to stop the treatments. However, if Mr. Brent is still working successfully against the lymphoma, neither of us is very eager to stop it. We scheduled the next treatment in 3 weeks like normal as well as a CT scan to see how effective Mr. Brent still is. That might give us a clearer picture as to what comes next.

May 21, 2018 Monday

I really need to finish this before it gets any longer!! I can say the sinus infection is gone, but I can’t say the cough is gone is yet. I’m still coughing more than I was, though I am now sleeping through the night without waking to cough. However, I am well enough now that Mom is planning on going home this week. Lord willing, it looks like Mom and I will be driving to Ohio to my sister’s place. Mom will drive home to Illinois from there, and I will drive my car home. I am taking a friend with me to ride with me on the way back.

Prayer Requests:

  1. Praise for God’s gift of good health during my trip.
  2. Praise that I’ve not had complications from my sinus infection.
  3. For a good CT scan in 3 weeks.
  4. For wisdom on the decisions about Brentuximab.

God is good.

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