Woe is Me!

December 19, 2019

I haven’t posted in a few weeks since I was hoping that I would have had the ablation injection in my left hip to report positive outcomes. Instead, the pain increased in my right hip and the stabbing pain started again this time in my right hip mainly with some in the left hip. In addition, I was having the neck and upper back pain likely caused from having to push up to get in and out of the bed. While waiting for the ablation to get scheduled, I called the Neurosurgeon and they thought a steroid and numbing medicine might be good for my right side with the idea that the injection in my right hip would be as helpful as the original one in the left side.

Unfortunately, it wasn’t very helpful at all. When I had the injection in my left hip, I had some relief and I didn’t have to take pain meds for about 10 days. Then, the pain started back in both hips. The neck and upper back pain were becoming a real problem. As a matter of fact, I had to go back to the original dose of pain meds four times per day from the 3 times per day that I had maintained before.

Please keep in mind that since there doesn’t seem to be a direct link between the pain and the liver cancer, the Palliative Care protocol was that in this case they must refer you to a Pain Specialist Group. The original plan was to refer me to UT Pain Management since they were also at UT where my other Doctors are.

But we were all fooled since that group only manages physical pain with physical therapy and other methods of relief and not medication management. This seemed like a big problem since I had less medicine than I needed to do me until my Neurosurgeon appointment on January 14th.

Palliative Care referred me to another clinic that could handle my needs. So far, I feel good about the visit I had with the Pain Consultant. Hopefully, I can control my pain for the most part. They prescribed a back brace and muscle relaxer which are sure to exacerbate my fatigue. And they will write a prescription for four pills per day.

My treatment plan at this point is: Have my four month scan of my liver and abdomen on January 15th to see what is going on with my cancer; Visit the pain clinic on January 16th; and; and then have my labs and see my Oncologist on January 17th. The second week in January promises to be quite eventful!

I won’t lie and tell you that I am not anxious about the findings and the next steps. The last scan my tumors had reduced in size, but the tumor markers went from 600 to 1100. The real deal is that the last 6 or 7 weeks my fatigue and sleepiness have gotten much worse. I fail to have any energy and when I have something that is important, I must push so much. I try as hard as I can to spend quality time with family, but it is tough even though I appear to be positive an upbeat. It is difficult since any burst of energy is short lived and takes a toll.

I have missed quite a few Toastmaster meetings and Cancer Support Group meetings and if you know me you know that those are important to me. Shelia has been so supportive and is driving me back and forth quite a bit more than before. She is one fine woman and I couldn’t do even this well without her! I love you Doll!

So, here is where I am at in the most important parts of my struggle:

  • On the Physical side, I am miserable with all the fatigue and excessive tiredness. And even with pain meds, it’s not a cakewalk. I don’t really see me coming out of this pattern soon.
  • On the nutrient side I am not doing well with food. I am still plant based but not eating the real nutritious food like smoothies and raw plants.
  • On the exercise side, there is NONE. I just can’t do it!
  • And on the spiritual side I am lost. I have not lost any of my faith and spiritual beliefs, but I absolutely have no energy for spiritual exercises.

So, it wouldn’t be much a surprise to acknowledge I am dealing with depression. Not a clinical depression but just the feeling that this cancer may take me out sooner that I want. The truth is that my quality of life is declining. I still find moments of joy by spending time with my family, my friends, and my colleagues. I am not ready to give up, but it is increasingly difficult with all my problems.

It is time to get off here and try to get some rest. I really can’t tell each one of you just how much your love, prayers, and unbelievable support you have shown me over the last 17 months or so means to me. Many people with my diagnosis sometimes only last 2-3 months. So, I am ahead at this point, but I don’t know what the future will bring.

I will be posting a separate blog to share the third in my “Grand” Series of Stories entitled, “Ivan and Jimbo’s Park Adventure” soon.

Loving Regards, Jim

Story Time 2

It been almost a month since I have posted so I thought it is important to catch everyone up. The last time I posted I had just had the injection and my Neurosurgeon had recommended an ablation in my hip joint. Believe it or not, it has still not been scheduled. In the meantime, the lower back pain is creeping back in on both sides.

I had slowly taken myself off the Gabapentin to try and determine if was helping at all with the pain. But I saw the Palliative care Doctor and we decided to started back  with a low dose and work my back up to see if it helps. We did decide to not go up to the 600 MG three times a day since I was dizzy when I was on that dose..

I have also experienced more sever pain in my neck and have been going to Physical Therapy a couple times per week. I hope it helps in the long run.

Besides the pain, the real problem I am having is increased fatigue and weakness. It has caused me to miss a couple of Doctor appointments and Toastmasters activities. I even had a couple of episodes where I felt drunk like. I believe that my Vertigo was kicking in since I have had in all my life and it is occasionally.

So, the plan is to get back with the Neurosurgeon and get some guidance on injections.

Again, I want to express my utmost appreciation for all the love, prayers, and healing energy that each have you have sent my way. I absolutely believe it is making a difference for me.

Love, Jim

I this post I am also sharing the second book in my “Grand” series. I hope you enjoy.


The Adventures of Papaw and Lily James


By Jim Johnson (Papaw)

The second in the “Grand” Series of Stories

It was going to be a special day at the Wright House. Lily was going to have a visit with Papaw. Lily woke up and suddenly remembered what day it was, and she ran into the kitchen and asked her Mom, “When will Papaw be here Mom?” Her Mom told her it shouldn’t be much longer and that she had just enough time to get dressed, eat her breakfast, and brush her teeth. Lily was excited because she knew Papaw would have some fun stuff to do and maybe even a new adventure.

Sure enough, when Lily was just finishing brushing her teeth, she heard the doorbell. She ran from the bathroom and got to the door before anyone else. She flung the door open and Papaw was right there with a big smile for Lily. In return she knew what Papaw was going to say next and, of course, she was right.

Papaw asked, “Lily, where is Papaw’s hug?” When they started hugging Papaw exclaimed “Lily, you are one of the best huggers in the whole world.” And Papaw knew a lot of great huggers, so he meant every word he said. Lily would not disappoint Papaw because when he hugged her, and she hugged back Papaw would squeal with joy and Lily would hug a little tighter. What a way to start the day!

Lily and Papaw had come up with a lot of games and activities over the years and Lily was wondering what Papaw would come up with first. Papaw said to Lily, “I have a new game to play today, Lily and it’s called “Magic.” Lily didn’t know how to play Magic, but she knew Papaw would make it fun.

Papaw and Lily sat on the couch and it wasn’t a minute before Papaw looked at Lily and said, “Lily, what is that in your ear?”   Before Lily could answer, Papaw reached up and pulled and tugged on Lily’s ear and then pulled out a shiny quarter. Lily gave Papaw a funny look and asked, “How did that get in my ear Papaw?” Papaw told her that it was just “Magic” and Lily just laughed with delight.

Before the Magic game was finished Papaw was able to find several more things in Lily’s ears. He found some more coins, a Chapstick, and even a Chuck E Cheese token! Each time Papaw took a lot of time and was very dramatic removing the items. And every time Lily just smiled and laughed and couldn’t believe that Magic had put all those things in her ear without her knowing.

Papaw asked Lily to choose the next game and Lily blurted out “Hide and Seek!” Hide and seek was one of Lily and Papaw’s and favorite games and they would always take turns. Papaw told Lily “Lily, how about you hide first, and I will count to 20 and then look for you?”   Lily didn’t even respond except to scamper down the hallway in search of her favorite places to hide.

One thing that Lily really liked was that Papaw counted very loud and was very dramatic when he said, “Ready or not, here I come!” Papaw liked to say things like “I know where you are Lily” even though he really didn’t. He would do that to try to get Lily to laugh or give herself away like she did when they first started the game years ago. But now Lily was a very experienced hider, so she kept quiet most of the time.

Papaw looked in Lily’s playroom, but no Lily. He then went to one of Lily’s favorite places to hide. As Papaw walked into the bathroom he declared loudly, “Lily, I know you are in here!” as he quickly pulled back the shower curtain to reveal – No Lily. Well that was a surprise.

Papaw was running out of good hiding places to find Lily, so he walked down the hall a little more and made a dramatic entrance into Lily’s bedroom again exclaiming “Lily. I know you are in here!” Papaw had a hunch that Lily was hiding in her closet because she could usually have just enough room to squeeze in and close the folding doors.

Papaw quietly went to the closet and paused for a moment. He then opened the doors quickly and shouted “Gotcha!” The trouble was that Lily was not there. Right about then, Papaw heard a low chuckle. He turned around saw Lily under her bed just laughing at Papaw. Papaw was tickled to and just reached under the bed and pulled Lily out and got a big hug while both were laughing and giggling.

Papaw and Lily continued playing until there were no more places to hide. They even did a couple of rounds outside and there are only so many trees and sheds and bushes to hide behind. They both hid from Lily’s Mom behind a tree. After some fun time, Papaw and Lily went back inside to see what else they could do.

After a lunch Lily asked, “Papaw what can we do next?” Papaw knew the perfect answer. He said quite boldly “Tickle Finger!” Tickle finger was a game that Papaw made up one day while spending time with Lily. It was simple. Papaw would ask Lily “Which one is my tickle finger?” as he was holding all his fingers out and wiggling them.

The secret was that it didn’t matter if Lily picked the correct one or not, it was a tickle and she would just cackle and laugh. Sometimes Papaw would say “Not that one but this one” and he would tickle Lily. Sometimes Lily would pick the right one and she would still get tickled. Sometimes Papaw would declare “It’s all of them.”

Lily would always take her turn in asking Papaw which one her tickle finger was and then turned the tables on Papaw. And then Papaw chuckled and laughed himself. He loved it when Lily tickled him too. Papaw and Lily continued to play Tickle finger until they were both tickled out.

It had been a long fun filled day for Papaw and Lily and it was time for Papaw to head back home. Just like always Lily went with Papaw to the door to tell him bye. And just like always Papaw exclaimed “Lily, Papaw needs a hug! Sure enough, Lily put her arms around Papaw and really squeezed hard. She never wanted to have Papaw to forget what fabulous hugs she gives. And he never would.

About the time that the hug was complete Lily looked up at Papaw and said, “Papaw, what is that in your ear?” Papaw didn’t have a clue, but Lily reached up to his ear and made a big effort to pull something out. Papaw then asked Lily what it was, and Lily showed him a Chuckee Cheese token. This surprised Papaw and he asked Lily, “Lily how do you suppose that got in my ear?” Lily said in a confident voice and a twinkle in her eye, “Its Magic, Papaw!”

Papaw gave Lily the biggest smile ever and told Lily. “I love you Lily!” and Lily told Papaw “I love you too Papaw!”

Story Time

My last blog post highlighted my “Rough Ride” with pain and my injection in my hip/sacrum joint.  The injection worked really well for a couple of weeks but some of the lower back pain has returned. But not the excruciating pain at this point.  I saw the Neurosurgeon on Thursday and they recommended an ablation injection that will burn the nerves out and allow them to grow back along a different path and alleviate the pain.  Sounds good to me so it will be scheduled soon.

I go back to the Oncologist next Wednesday but don’t expect any meaningful change at this point.  The next big thing will be my MRI scan in early January that will tell us what the tumors are doing.

In the meantime I am going to be sharing some stories that mean a lot to me.  I would love to be a published author but of course you have to write first.  LOL.   I hope you will enjoy reading them as much as I did in writing them.  Let’s go!

The Adventures of Granny T and Little Rose

“A Good Day for Hugs”

By Jim Johnson (Papaw Jim)

The first in the “Grand” Series of Stories

The first thing that Granny T heard this morning was a bluebird singing in the backyard garden. At first it was like a peep but then it seemed to change to saying, “get up.” So, she did.

Granny T noticed that Papaw Jim had already gotten up and by the smell of fresh coffee she knew she was in for a treat. She went into the kitchen and poured her a nice cup of coffee and then she decided to join Papaw Jim on the back porch.

She went out and gave Papaw Jim a warm hug and a good morning kiss and then she noticed that the bluebird was still singing, and she could also see him now. Granny T was really enjoying her coffee and watching the bluebird for a few minutes when Papaw Jim asked her “What kind of adventure are you planning with Rose today?

It didn’t dawn on her until then that it was Thursday and it was Adventure with Rose day! Thursday’s were Granny T’s and Rose’s special day to find a new adventure. It was only a few minutes after that that Granny T heard the doorbell ringing and she was almost certain she knew who it was.

Granny T went to the door and sure enough it was Little Rose, and she was all excited jumping up and down and asking Granny T “What are we doing today Granny T?” She then burst in and gave Granny T the biggest and bestest hug ever. It was well known that Granny T was the best hugger in the whole world and Rose was not far behind.

Granny T said “We have a wonderful Adventure planned right after a healthy breakfast.” Granny T was going to have to think of something quick but she never disappointed Little Rose and she certainly wouldn’t start today.

As soon as they had their breakfast Granny T took Rose by the hand and led her out the back door to the porch where Rose gave Papaw Jim a big hug and then it was off to the woods in the rear of the garden. It was a beautiful fall day and a bit crisp but warming fast.

The first thing that Granny T and Little Rose came across was a few squirrels running around the leaves and searching for hickory nuts. One squirrel had a few nuts in his mouth and his cheeks puffed out and it looked so funny that Rose laughed out loudly. Little Rose asked Granny T “ Granny T, what are the squirrels doing?”

Granny T told Little Rose that since the squirrels couldn’t go to the grocery store like people could, they had to gather nuts and store them in their nest, so they could have food for the winter. Little Rose looked up in the tops of the trees and saw several nests where the squirrels live and store their food. She told Granny T that it was surely a good thing she didn’t have to store her food in a tree since she didn’t think she could climb that high. Granny T chuckled and after a few more minutes watching those busy squirrels they walked further in the woods.

A little further in the woods Little Rose heard something squawking and then she and Granny T looked up in the sky and saw some birds flying over in groups. They were making a lot of noise as they flew over. Little Rose asked Granny T what they were doing. Granny T told Little Rose that these looked like a flock of geese and that since the birds didn’t have warm homes to live in when it was winter that they had to fly south for the winter and then flew back for the summer.

Little Rose told Granny T that she sure was glad that she didn’t have to fly south for the winter because she was pretty sure her arms would give out before she got there. Granny T just laughed and was glad that Little Rose was somewhat precocious.

When Granny T and Little T came out of the woods it was clear that the temperature had warmed up and it was already a beautiful day. When Granny T and Little Rose looked up in the sky there were quite a few big fluffy clouds. Granny T knew what Little Rose would ask next and it gave her an idea.

Sure enough, Little Rose asked Granny T what the clouds were for, and Granny T told Little Rose that one of the best things about clouds was using them for a game and then Granny T asked Little Rose if she wanted to play a game. Little Rose said “Of course.” There was a slight grassy slope right ahead of them and Granny T laid down in the grass and Rose followed because she knew it was time for some more fun.

Granny T told little Rose that the game was to look at the clouds and see if they remind you of something that you have seen before. Granny T said she would go first to show Little Rose how to do it.

Granny T glanced up into the sky and considered several clouds.   At last she was sure of what she saw and exclaimed to Little Rose “That cloud looks like a cat and pointed to one that seemed to have a nose, eyes, and ears. Little Rose told Granny T that “It does look like a cat”

It was Little Rose’s turn and she took her time by looking at most of the clouds at least once before she proclaimed that one looked like a turtle and showed Granny T its four legs and a short head coming out of its body. Granny T was very impressed, and she told Rose that she had a good eye for clouds.

Granny T and Little Rose took turns until there were no more clouds that looked familiar and then they just laid back in the soft grass and warm sun. After a few minutes Little Rose decided it was time for a hug. She moved over into Granny T’s arms and it was a tie for who the best hugger was. Little Rose had come a long way.

Little Rose looked at Granny T and said, “Granny T, you are my best friend!” Granny T told Little Rose “Little Rose, you are my best friend too and I love you so much!” They just smiled at each other. It was indeed another great adventure and they couldn’t wait till next Thursday and another new Adventure.

Rough Ride

A very long time ago, when I was in the Marine Corps, I had a buddy from Texas. He was a real cowboy too and liked to go to the rodeos and ride bulls. Me and some friends would go with him from time to time and cheer him on. It would always amaze me to watch fully grown and perhaps intelligent men get on the back of a huge animal and try to ride it for eight seconds while he would buck and lunge and try desperately to buck the rider off. It’s been called the most dangerous eight seconds in sports. It seemed that very few of the cowboys would make eight seconds and the ones that did looked like they had been through a rough ride.

The last four months have been a rough ride for me. Mainly because of the excruciating pain in my back and ribcage. It took a long time to diagnose it and I have been taking oxycodone and gabapentin to help relieve the pain. They did help quite a bit with pain control. Unfortunately, the effects of those drugs put me in a situation where I was sleepy and dizzy a lot which limited my outside activities. It also has resulted in me not being able to write much so I am way behind on letting folks know what was going on.

The good news is I was referred to a Neurosurgeon, but it took a while to get an appointment. The Neurosurgeon looked at my MRI and examined me thoroughly and diagnosed me with lumbar spondylosis/sacroiliitis. Wow what a mouthful. The next course of action was to get a CT guided injection right in the joint where the hip meets the sacrum. Both steroids and a numbing medicine is used, and I had talked with several people and they indicated that they had good results.

Since it had to be conducted by an Interventional Radiologist and the department was short a doctor it took a while to get in.

I received the injection this past Friday not knowing if I would get good results or not. I can’t lie, the injection was painful but didn’t last long. After the Doll got me home and settled in, I just took it easy. Friday night the injection site was a little sore but manageable. By Saturday morning I could tell a big difference in my pain levels. I was told it might take 2-3 days to see improvement if I was going to see it. So, I was surprised. And today it is even less painful, and I can move around and get in and out of bed pain free!

My wish is that the effect will last, and I can reduce or eliminate my need for pain pills and gabapentin. I was told that if the injection works then it should last 4-6 months. I can certainly live with that. So hopefully my bout with pain is over for now. If so then I can have a better quality of life and get back to being a cancer patient. Wouldn’t that be nice?

And speaking of being a cancer patient lets get you up to speed on that. I had my MRI scan last Thursday, 3 months after my last one. I saw my oncologist this past Wednesday. To say I was pleased with the results would be an understatement. The results showed that my main tumor has shrank by about 12% and as for the other two satellite tumors, one shrank slightly and the other one remained the same. That means that the Lenvima and the other things I am doing is keeping my cancer from progressing. That is the only goal that is important at this point.

With these results, I go from seeing the oncologist every six weeks instead of four, and I go from having my scan every four months from three months. A good sign overall.

We did discuss that this targeted chemo may not continue to slow or stop progression at some point since the cancer cells are always working to figure out how to outmaneuver the medicine. When that time comes, we would move to a second line agent called immunotherapy, perhaps Opdivo, which is infused much like chemotherapy. But the time for that is not now. Now is the time to celebrate the good results from my cancer treatment and the good results of my injection. Let the good times roll!

I believe this recent rough ride is over for now. And I know that I couldn’t have gotten this far without all your prayers, good vibrations, healing energy, and love from all of you. I sure hope to be better at letting you know what’s going on in the future.

It is also important to report that the Doll is doing everything she can to help me through the rough periods and the not so rough periods. Even when I am grouchy. I love her to the edge and beyond!!!

Love, Jim

Writers Block??

I was preparing to write a blog post to catch everyone up and I noticed my last post was over two months ago on May 11. At this point I must apologize to each of you for not keeping up. It isn’t really writers block but when the pain takes over the last thing you want to do is write.

As you may recall in my last post, I had just seen my Oncologist with the news that the Lenvima was working on slowing my cancer down. Since then I have had some setbacks but probably not from the cancer at all.

About 5-6 weeks ago I started experiencing some pain and discomfort in my rib cage area. One of the problems was that the pain seemed to move around. I would say the pain was like what I had experienced with costochondritis that I have had a couple of times and it is due to inflammation in the muscles around the rib cage. It usually takes a while for it to diminish but until it does you experience sharp pains when you move or cough. It is quite painful.

Right before I stated having the pains my bowel habits changed and I started having constipation. I believe that started me down the path to most of my problems.

My oncologist had prescribed for me a low dose of pain meds for the on and off liver pains, but I had not had to use them very often. But when I started with the rib pain, I was forced to use the pills more often and of course this made my constipation issues severe, and I had to fall back on more aggressive approaches to curb the constipation problem. That was very frustrating.

Prior to getting the constipation resolved, I started to have severe spasms in my lower back that have pretty much left me at a point where I am devastated by my lack of mobility and quality of life. I do not believe that these spasms have anything to do with the other pain I was having, nor do I believe that they are connected to my cancer or the Lenvima that I take.

I saw the Oncologist and they had me do a whole-body bone scan (the second one in my life) It showed that the cancer had not spread to my bones. Also, the blood work was good. After I got the news about the scan, we tried to take a beach vacation that we had booked a month or so before the lower back pain appeared. That was June 21st. I can say at this time that the decision to go was a huge mistake. The lower back pain was so severe just trying to get in or out of bed was excruciating. If I could get in a chair and get comfortable, I was ok for an hour or but when trying to get up or twist in any way the pain was so bad, I screamed and scared everyone. It was miserable for the because she spent a lot of time taking care of me.

We did have a bit of time where we did put out feet in the sand and sit on the balcony and enjoy the wonderful sea breeze, but the pain and the associated limitations made it out to be a dreadful time. I called my oncologist while at the beach and they suggested to get off the Lenvima as a precaution and they were scheduling an MRI of my back and an extra view of my rib area. We made it back to Knoxville on Friday and I had the MRI on Sunday.

I had an appointment with Dr. Clayton Bell, the Integrative Medical Doctor on Tuesday and it was suggested that I might try acupuncture. I did try that on that same Friday and had terrible pain probably from the table and how I was lying on it. I won’t be trying that again anytime soon.

I had an appointment with my Oncologist on Wednesday to go over the MRI and they also arranged to have the Palliative Care (Pain) Doctor to meet with me during the visit.

I had labs drawn and bloodwork was good, and the results of the MRI were negative. The oncologist put me back on the Lenvima since the pain did not diminish when I was off for about 5 days. So, where the hell could this excruciating lower back pain come from?? I don’t remember injuring anything but as a cancer patient I know that it is easy to get bruises and even breaks from brittle bones. So, I could have pulled or strained a muscle without even knowing it.

The pain specialist met with me and went over my recent experiences and conducted a thorough examination. She indicated that she thought it was an impinged nerve. She suggested starting a regiment of Gabapentin (Neurontin) to try to quiet the nerves down so they don’t spasm and to help me avoid the pain pills.

I have been on the Gabapentin about a week and a half starting with lowest dose and with the Doctor’s permission I have increased my dosage slowly to the next level. When I first started the Gabapentin, it did seem that the pain was slightly less, but I still needed to supplement with pain pills. I don’t take them unless I need to, and I am down to about one per day. The extremely sharp spasms have given way to only sharp pains when I get up or down or twist but not in a spasm. I am hopeful that the Gabapentin will help me control the pain as time goes by.

I have been referred to a Neurosurgeon for the back pain and I am seeing my gastroenterologist for my constipation issues. I hope to find the source of my pain and eliminate it. It also may come down to reducing my Lenvima if it could be causing a problem, but only after we rule out some of the possible causes.

I haven’t mentioned it yet but when I was having the spasms really bad, I had to rely on a hiking pole as a cane just to stabilize me when I was walking (very slowly).  I also now have a sturdy cane that also helps even though I am not having the severe spasms right now.

Through all of this, we have still tried to get out and be social and to enjoy what we can that is good in our life. Even though we have been out and about and posting on Facebook it hasn’t been easy. I have had to miss several of my Cancer Support Group meetings and my Toastmasters meetings, and I really don’t like that. But with the help and unconditional support of Shelia, we are doing what we can to avoid me becoming an invalid. When I must rely on pain meds the Doll is my chauffer and she is a great one. I kind of like having her drive me around. Of course, she is a great support to me in all other ways and I love her so much for that.

I don’t know what the future holds, but I know I have great support from my wife, family, and all the great friends that have shown me love and support by sending prayers, healing energy, and good vibrations my way. I am almost a year out from my diagnosis of a very serious cancer that usually has only a 2-3 months life expectancy and I plan to hang around just as long as possible. Now to find the source of my pain and eliminate it so my quality of life is as good as it can be.

Love, Jim

Surprises Can Be Good for the Soul

I had planned to post today since this is the day that I would see my oncologist and discover the results of my scan and bloodwork from Monday. I have been somewhat calm this past week, but I had a few anxious moments as is normally expected. But I was determined to share the news no matter what it was.

I felt that this post would have to go deep as far my emotions and feelings were concerned. Although I am still positive, my cancer is very serious, and most folks don’t live too long even with treatment. I was prepared to hear that the medication has not helped, and that the cancer had spread; I was also prepared to hear it was time to go on a 2nd line Immunotherapy drug like Keytruda or OPDIVO; I was also prepared to hear that the cancer had spread and there was no hope and I should go into hospice. I suppose I was preparing for the worst and hoping for the best.

The best news would have been that there was no sign of cancer and I had experienced a radical remission. That would be a complete miracle and a longshot for sure. Not likely even though I have had so many praying for me and sending healing energy to me. Not likely that the medicine nor my supplements and whole food-based lifestyle would have resulted in a miracle either.

But all those factors can make a difference. I didn’t hear the worst news possible nor the best news possible, but I must tell you that the news I did hear was perhaps the absolute second-best news possible and I am extremely grateful for that!  I was somewhat surprised.

My bloodwork was really good and showed my kidney and liver functions were good and my potassium, which had been high and created a very dangerous situation for my heart, was in the normal range. Tumor markers won’t be available for a couple more days.

The scan results were even better! The large central tumor is smaller and showed an increase in hemorrhage, likely showing treatment response. The other two satellite tumors were unchanged which is great. And the real important thing is no cancer has spread outside the liver. A huge deal at this point in my treatment.

I think my Oncologist, Shelia, and I were all happy with these results. These were the first results so far that didn’t show worsening of my disease. So now back on the Lenvima since it appears to be working. Managing the side effects will be a priority. I will go back in a month for labs and a follow-up and will continue a 3 month cycle for scans at this point. My oncologist indicated that if future results were as good then we might go on a 6 month scan schedule.

To say I am pleased would be an understatement and I know for my lovely wife she is quite relieved, as am I. Please don’t think that these results and my attitude will produce a cure. But what it will give me is more time to complete the important work I am on this earth to do. I will now soldier on and live as much and as long as I can. That is the least I can do!

And I would be remiss if I did not thank each of you individually and collectively for prayers and spiritual energy you have sent my way. I am convinced that it has had a major impact on my outcomes this week and I ask you to continue to lift me up.

Until next time. Love Jim

Death and Taxes

The saying is true. You can’t escape death or taxes, and, in many cases, someone must pay your taxes after your death. Is there an individual reading this that hasn’t faced the fact that they will die? I think not. But just accepting that fact intellectually doesn’t really stimulate the reality of death. I think that all of us go through our lives and put the knowledge of our inevitable act of death in the back 40 of our brain.

Even when we, or a loved one, are faced with a serious or terminal diagnosis we usually try to concentrate on the cure or the fight for a cure. We might say things like “I am hoping for a cure” or “I have had a good life and I am not afraid to die”, or “I know where I stand spiritually and I am ready to leave this harsh old world” I bet if you have been paying attention you have heard me say all of these and more. I mean them all.

Today I want to put all of that to the side and report on a revelation that I had at my Cancer Support a couple of weeks ago. One of the ladies in the support group had been in hospice for quite some time, even before I joined the group earlier this year.

She had gone through all the treatments possible and was just trying to keep her pain under control and possibly be around for the birth of her latest Grandchild. The great news is she was able to make it to New York for the birth. In looking at the pictures I thought it was so marvelous she was able to hold that baby. It seems like she was pouring every ounce of her love for this new baby’s long life ahead even though she was painfully aware that she would not be there for the special times. I emailed her and told her that the pictures and her presence will provide so many memories and conversations. She responded by telling me that she had given her husband all the instructions he needed. She had a sense of humor.

She never made it back to group. Frequently we got word that she was in a lot of pain or that she didn’t feel well. I think all of us in the support group were feeling that we wouldn’t see her again. We did send a few cards and I hope they made her feel a bit better about our connections. I remember that there were quite a few comments that she made when at group that helped me change the way I was thinking and gave me some great perspective on my cancer battle.

A couple of week ago we all received calls from our wonderful facilitator letting us know that she had passed away the previous evening. This was an attempt to give us some time to process the news prior to the meeting that same evening. I think that all of us appreciated the sensitivity of our facilitator. She always seems to know just what to say and when to say it.

As you might imagine, the first part of the meeting was quite somber. We were all sharing our feelings about her and mostly how she impacted us from our interaction in the group. Although I had not known her very long, I was able to talk about several things that I took from her that helped me. We all experienced sadness but also the knowledge that she was no longer in pain.

The support group for me is a magical place where I can share and be shared with so many feelings, ideas, strategies, etc. since all of us are going through a similar, but not equal, journey. I always take away something of value and it always helps my perspective.

But something was different this group. It didn’t occur to me until my ride home, or perhaps the next morning. Although I don’t recall anyone expressing it during the group, and I am not sure I was even processing it in my own mind at the meeting, none of expressed how her passing required us to face our own mortality.

But when I look back and remember the feelings that was a big part of it. Our support group is a wonderful place to share and I feel a little frustrated with myself that I did not broach the subject since I believe others would have echoed my sentiment. I did bring it up the next meeting a week later and we a good discussion about it.

I have to say it stuck with me. I won’t get out of this old world alive; I won’t cheat death; and I will die of something whether it is from my cancer or something else. I truly believe that this experience had made me feel better about my life and my legacy. I can still concentrate on my treatment and try to milk every bit of life I can, but I now fully realize that just like everyone else in this world, I am going to die. I am not unique in this way.

And when I die, I hope that those I loved, and loved me, will remember me fondly. I hope they remember me as a virtuous and kind man. That is my hope now. Not the hope that we find a cure for my cancer because I will die of something anyway. So how I am remembered is my real hope.

My other hope is that as you read this, it may stimulate something in you that will allow you to continue to build on your good relationships, and to work on improving or repairing other relationships in your life that are not as good as they might be. It may not be easy, but I can attest that it will be worth it to you.

I urge you to face your own mortality now and put in place actions that guarantee a legacy after you have transitioned. After you are gone it will be too late. I can’t tell any of you when you will die but I can tell you that all of you will someday. Plant those good memories now. You are the only one that can.

Love Jim

A Wonderful Day!!

I have had some rough days lately, but I still try to push through and enjoy my life as much as possible. Wednesday, April 10th was the Doll and my 8th Anniversary. It was an exhausting but wonderful Anniversary for the Doll and me. Lunch at Whole Foods, dinner at Connor Concepts with convertible time in between on a brilliant, warm day. We ended our day on the screen porch with our mini-fire pit and enjoying our time together. We plan to enjoy as much life together as we can. A very happy day!

It was a real struggle because along with the exhaustion and pain, my usually situational vertigo reared its ugly head. The first thing that I felt when I got out of bed was my head was spinning and it didn’t ease up much until late afternoon. But luckily the Doll loves to be my chauffeur, especially when she is driving the convertible.

By the time it came to go out to dinner, I felt like driving again and I did fine until I got out the car at the restaurant. When I turned my head, I got dizzy again. We really enjoyed a wonderful meal and the Doll drove us home.

We ended the day on the screen porch with our mini fire pit and expressed our blessings to each other. It is wonderful to have a mate who understands the journey I am on. She is still on hers as well.

This post is a short one, but I think it is important to share with everyone. My days run from rough to very rough, but I am always looking for those snippets of joy and happiness. I may have a serious cancer, but I will not allow it to control my every thought and rob me of my joy.

I return for the MRI Scan on May 15 and see the Oncologist on May 17 to discuss results and next steps. The hope is that the Lenvima, in addition to my complimentary alternative treatments, will slow the cancer down. If not, then we must look at next steps.

I will close by saying again that all your support and love have helped me keep a positive attitude and have increased my hope for more trips around the sun. I also want to declare that my lovely wife is awesome, and I love her to the edge of the Universe, and beyond, and I know she feels the same about me!.

Love, Jim

Put on A Happy Face

“Jim Johnson is a positive minded person. A person who knows the glass is always full no matter how much water or air is in the glass. It has been said that he has always been positive, even when he was a kid. There is confirmation from other human beings that this viewpoint is true.

It is kind of ironic that many years ago some of his co-workers at TVA called him “Blue Sky” because of his cheerful attitude. One could assume they were wanting to be somewhat derogatory since many of them were pessimists and grumblers. I bet they were somewhat annoyed when Jim wore his “Blue Sky” badge and reveled in its truthful meaning for him!”

I can tell you that I still have a positive attitude even in the worst of times. The last two weeks, and especially the last week, I have been sicker that any time in my life other that when I had the flu so bad that I had to be bedridden for four days. The side effects that I mentioned in my previous post have increased plus the onset of a sinus infection have weakened me and almost caused me to be homebound.

To make matters worse, the antibiotic that I was prescribed gave me serious diarrhea after a couple of days. That weakened me even more and I don’t know when I have felt worse. I stopped the antibiotic and the diarrhea has finally stopped.

It has been a very rough week for me. I missed another Toastmasters meeting and I struggled with moderating the ETMP Meeting on Tuesday. I asked the questions for the panelists and had to sit several times between questions due to leg pains.

I go to the Oncologist on Wednesday for bloodwork and a check-in so hopefully we can discuss some options to help with the side effects. I sure hope for the slightest of relief.

Let’s turn that frown upside down! Despite this miserable situation I find myself in. I am still searching and finding joy in all parts of my life A slice of joy occasionally makes life worth living. Even when I take pics and selfies, I try to put a big smile on while obscuring my physical and emotional aliments. Can you say, “Fake it till you make it?”

Some of my recent joys include:

  • Spending quality time with my Doll holding hands, hugging, and comforting each other while gazing into each other’s eyes What a powerful soul connection. It always gives me goose bumps.
  • Enjoying the beautiful sound of the wind chimes and the birds while sitting on the screen porch with a coffee. A little bit of paradise and it will be enjoyed more as the temperature rises. It will be a great place to rest and reflect. It is the Doll’s favorite getaway too so that means even more time together.
  • Seeing posts of my granddaughters Rose and Lily enjoying their lives and activities. The are fabulous little ladies and so talented. They have very bright futures.
  • Keeping up with my son, Tony, who continues to be consumed with music and keeping those beer steins full. He really seems to be more settled than ever and continues being a great Dad for Rose. I m proud of my son!
  • Reading about my daughter, Brianne’s, accomplishments. Whether she has written a new book, or on TV for an interview, or off to receive another prestigious award from the various Associations for the Archives. She is at the top of her game and it makes my heart swell with pride to have her as my daughter. She is an awesome Mom to Lily too.
  • Riding in the convertible on a sunny warm day. More and more the Doll is the chauffeur, but whether driving or riding it is wonderful to feel the wind in your hair and the sun on your skin!
  • Having people respond to my Facebook posts with such nice thoughts like “you look great” or “beautiful couple” People lift me up!
  • Seeing so many posts of beautiful children or grandchildren of my Facebook friends. There is nothing more precious than a child.
  • Reminiscing about what Teresa and I did with Tony and Brianne when they were younger. When I visualize those memories, it warms my heart and invokes tremendous emotion.
  • Watching Blue Planet or Planet Earth episodes with my current nuclear family of Shelia, Haylee, and Ivan. We are a family and it reminds me of what family is all about. We do lots of family things and it seems normal now. I hope we can do more as time goes on. We have a lot of love right here!
  • Attending a Toastmasters or ETMP meeting when able and discussing anything other than cancer. Cancer cannot be the Boss of me!
  • Attending the Support Group on Tuesday evenings at the Cancer Support Community. It’s a place where I can listen or share from so many wonderful people who have one thing in common – cancer! I have only been a member for a few months, but I feel so good about these folks. They inspire me in some way every meeting and I am so appreciative of them. I belong.
  • Reading wonderful motivational posts from my friend All Goggins. He comes up with outstanding ways to lift me up spiritually.
  • Keeping up with my friend from New York, Kenny Martone, who is battling the same cancer as me and whose has been valiant and fearless in his journey despite horrendous treatments and side effects. He is a very brave young man with a fantastic attitude!
  • Spying fresh flowers and plants coming out for spring and just being dazzled by their beauty.
  • Being out on the back deck and letting the warm sun soak in and enjoying the blue sky. It can’t help but to settle you down and appreciate the wonderful world in which we live.

Obviously, I could list so many more areas where I find tremendous joy in everyday life. When you have cancer with an undetermined outcome it is imperative to find those sparkles anywhere and everywhere possible. Two things happen when you do that. One is that your mind focuses on the beauty and wonder in front of you. And two, you have less time to focus on the cancer and its impact on you. It is not always easy to focus on the right things, but it is necessary to try.

My friends, I want to say that along my journey so far it has been a tremendous feeling to know the love and support that you all have given me. I do not know where my journey will take me or when it will end but I do know I will have your unwavering love all the way and I thank you so much for that. As humans there is nothing more powerful than our connections!

Love, Jim

It Isn’t in My Blood

Help me, it’s like the walls are caving in

Sometimes I feel like giving up

But I just can’t

It isn’t in my blood

Or is it?

I wake up cold and hurting. As I open my eyes, I can tell it is very dark and wet and as I  gaze in the distance, I see brilliant lightning and hear and feel violent thunder. I look at my feet and I am in a life raft in the ocean with the water spilling over the sides into the raft keeping me chilled to the bone. The storm threatens to take what is left of my life. I am alone here.

This is a recurring scene that that happens in my mind every day and sometimes multiple times per day. I believe this is the manifestation of the side effects of my medication or as result of the cancer, perhaps both.  No matter the reason, I am having a difficult time finding any energy to do much and quite frankly, I am having difficulty finding joy in the normal things that I usually find joyful.

It is obvious I am depressed. I don’t feel like myself. You know the guy who never gives up and fights hard all the time? You know, Jim Johnson?

Here are the side effects I am experiencing with Lenvima (In order of observed severity) Started 2-14-19

  • Tiredness/Weakness (Overwhelming)
  • Leg pain and difficulty walking especially on first standing from a sitting position
  • Headaches & Flu like Muscle and joint pain (No Fever)
  • Hoarseness and Sore Throat
  • Muscle Cramps and Muscle stiffness & Weakness in legs
  • Tingling/Numbness in feet
  • Nose bleeds (Once or twice)
  • Pain/Discomfort Right Abdomen
  • Coughing (Occasionally)
  • Heartburn (Once or twice)

It has been a struggle!

I know that in addition to these side effects destroying my happy place the depression is trying to creep in. I won an area speech contest a couple of weeks ago in Toastmasters and was scheduled for the next round this past Saturday. I absolutely could not muster the energy and willpower to show up. If you know how much I love Toastmasters and competing, then you know it must be serious

When the life raft scenario come into my mind, I play out several scenarios. One is that I try to ride out the storm by hanging on for dear life. Another one is to wait for help that I have no way of knowing if it’s coming. And as much as I hate to admit, dear readers, one is just to move to one side and allow the sea water to sink the life raft and take away all my pain and suffering.

Please don’t panic. This doesn’t mean I have given up hope, but it is important to compare quality of life versus quantity of life. With cancer and cancer treatments you never know what you will get and if it is putting a damper on my quality of life, it will continue to be a burden that I need to carry. Cancer is mean, Cancer is insidious, and cancer is a monster. I know I have said that having cancer is a gift in that you have time to finish important work. But sometimes the gift’s luster is a little less bright.

I hope to pull out of this funk soon and continue to write the blog posts that are important to write. I think it is very important to say to you all that your love and support has made and continues to make a huge difference for me.

Love Jim