I Didn’t See It Coming

I am very seldom surprised to the point that I didn’t see it coming. The last time I recall just missing it was from the movie with Bruce Willis and Haley Joel Osment called the Sixth Sense. You remember when the kid told Bruce that “I see dead people.” It was only near the end did I understand that he was including Bruce. I didn’t see it coming.

The only other time I recall was when the Redhead (Teresa) and a few friends threw me a 40th birthday party. My friend took me out for a round of golf and I only started thinking something was amiss when I saw extra vehicles in the neighborhood. But they were sort of spread out, so I was not ready when we walked in and I was instantly barraged with “SURPRISE” I loved it! I didn’t see it coming!

A couple of days after my rendezvous with the ER that I discussed during my last Blog post I had an ETMP Monthly Meeting at the Knoxville Convention Center. We had our Board meeting on the other side of the building from our Monthly meeting that was in the Lecture Hall. It was a last-minute change by Rebecca Williams, forever known as a key conspirator in the events that I will be describing. At that time no hint of any secret plan.

After the Board Meeting we all moseyed over to the Lecture Hall where I needed to set up the PowerPoint for the program. I was bit surprised to see Curtis Johnston (CUJO) there trying to get the sound system working for me. I assumed at that point that he was just there to help and enjoy the program. He was the featured speaker for the August Meeting when I had to be in New York and he has been to a few meetings. Plus, I see him at Toastmasters once or twice a week, so it didn’t seem unusual for some reason. I might have needed some “Six Sense” here. But if Curtis wants to become an actor in the next phase of his life I predict SUCCESS!

I could say at this point that I was probably under the influence of the pain medication that I had taken over the last week or so although I hadn’t taken any that day. But I was still in some pain so not as laser focused as I normally am. LOL Regardless, I never saw it coming.

So, Curtis and I sort of wandered to the doorway to the Atrium where the food was being set up. At this point the shock, surprise, appreciation of the totality of what was about to happen. There would be no regular ETMP Meeting this day. Only a coup could describe the situation.

When the doors opened not only were there a couple dozen of the regular ETMP attendees BUT about the same number of my Toastmaster Colleagues. This was instantly a big red flag that what I thought was happening was not even close.

The conspirators were many and included my lovely wife Shelia. I found out later that Shelia and Curtis were the main ones. Shelia was the one who had the idea to combine it with ETMP and it worked out very well. And I love them for it. They turned the meeting into a celebration for me receiving my Distinguished Toastmaster Award (DTM) back in the summer. I didn’t see it coming but I was so proud that I had so many of my ETMP and Toastmasters friends honor me with this special celebration.

I would normally get the Award at the next District 63 Spring Conference in April 2019 with all the other folks who achieved the Award during the year. But with my health situation it is not known if I would be able to attend. We even had the District 63 Trio (Top three officers for our District) come from the Nashville and Chattanooga areas. What a very special day it was for me. I will never forget the love and support from people I have known for a long time and some who I have been friends with for a relatively short time. It was a magical day and I thank everyone for making me feel so very special and honoring my achievement. As I always try to exclaim “Toastmasters Will Change Your Life…FOREVER!!! It sure has for me and brought me many friends who I love.

I didn’t see it coming but I will savor it forever!

Advertisements

No Pain, No Gain??????

As I alluded in my last post, I was far too optimistic regarding the pain as a side effect of my Y90 procedure. The pretty good feeling I wrote about quickly turned around. The end of the second day (Tuesday) I started getting pain right on the front of my abdomen where my liver is. It was intense, so I took a pain pill about 8 PM and about 10 PM or so I laid down.

About 4 AM I was awakened with an excruciating pain in the same area. I took a pain pill, but it took a bit to kick in and allow me to go back to sleep. The next day was another day of intense pain but was tolerable with the pills. By the time I went to bed I was feeling pretty good and relaxed with moderate pain, but I took a pill just, so I would sleep through the night.

It worked well and the next day I was merely uncomfortable but not enough to medicate.

However, on Friday I started getting some pain in my right side and shoulder area and it almost seemed like a gall bladder issue. My gall bladder had been deemed to have a lot of “sludge” but nothing to get worked up about. I called the IR office but didn’t get a call back, so I browsed the internet and reached out to my cancer patients blog to see if I could make sense of it. The conclusion I reached was it may be pressure on my gallbladder or even a very rare radiation induced gallbladder issue. The pain (and the consumption of the recommended dose of pain pills) persisted through Friday night, Saturday, Saturday night, and Sunday morning. By mid-Sunday I had had enough. The Doll took me to the ER at UT Hospital.

As is the case with the ER, it takes a while. I got triaged quickly and back to an ER room not long after. After getting all hooked up to the monitoring devices, I was screened by several nurses, interns, and doctors. I got blood drawn and my case warranted a CT scan with contrast. (I don’t know what will kill me first, the cancer or the radiation and other nasty stuff going in my body) The problem was there was a “fire sale” on CT scans so they were backed up. In the meantime, my pain meds had worn off, so they gave me the magnificent morphine drug. It helped!

Finally, after about 4 hours I went back for the scan. The attendant was very nice and was gentle in moving me back and forth and it didn’t take very long. Then back to my room where the Doll was waiting patiently (at least she wanted to appear that way) to wait for the results.

It was a couple more hours before the doc came in to give me the assessment. Gallbladder was fine except for the sludge. Pancreas and spleen were unremarkable. However, there was some congestion indicated in my right lower lobe of the lung. This could be the start of Pneumonia or perhaps irritation from the Y90. In addition, my tumor was slightly larger than the last CT scan in August but not unexpected and should stop or reduce with the treatments. And there were no other tumors showing in my lungs. Hooray!!

So, the bottom line is that nothing of an emergent issue, but pain would be present, so rest and pills was my prescription after investing about 7 hours at the ER. Not bad for a busy Sunday I suppose.

A follow up call from the IR Doctor’s office gave me information that pain, and fatigue could be around for up to 30 days but should diminish in time for my next round. LOL. The fatigue may be around for a lot longer. As usual the response is “everyone reacts differently to the treatment.” So, my notion of little to no side effects was terribly wrong. But its part of the process and the next treatment may not be so bad. Or at least I may have a better idea of what to expect.

My next blog will tell a wonderful story of friendship and people coming together to honor me. I am a very fortunate man to have so many wonderful friends. I want to thank each one of you for your love and support during this unplanned and unwanted journey. But a journey I am obliged to travel!

Love, Jim

WHOA, OH, OH, OH, OH, WHOA, OH, OH, OH, I’m Radioactive, Radioactive

Do you have a bucket list? Have you ever had a bucket list? Supposedly the things you want to experience or accomplish before you die. You perform them and then they are in the bucket!

That has never been an interest for me. I think one reason is that I like to go against the flow a little. Now you might say that’s not possible in that I did most of the things a man needs to do to be successful and I conform to societal norms for the most part.

But for some reason I always wanted to be a little different in the way I looked at things versus the normal. A maverick so to speak. I think that is why I consider myself a leader and not a follower. One example is way back in 1971 or so, I went to see B J Thomas in concert while I was on leave from the Marines. He had had a few hits songs like “Raindrops Keep Falling on My Head,” and “Hooked on A Feeling,” and “I Just Can’t Help Believing.” So, he was good.

But Imagine my surprise when I was blown away by the opening band. Just a little old band from Macon, Georgia called the Allman Brothers! It was my first love affair for a band and their music. I thought this Southern Rock/ Blues band was phenomenal. As soon as I could I bought all the cassettes I could find. (Yes, it was 1971 you digital addicts.) When I went back to California I tried to influence everyone with this music. No one had even heard of them, but they seemed to enjoy their music. I felt like I owned something that no one else had – the discovery of one of the best bands of all time and my all time favorite to this day. It seemed like no one else enjoyed it like I did. It was some power thing I cannot explain.

But my sharing of the Allman Brothers Band with a lot of people; the sharing by others; and the Band getting more exposure worked to my demise. Now instead of being the only mega fan in any group of Allman Brothers music lovers, I was just one of many. And therefore, not so special any longer.

I know that I went on to be a leader with a lot of things after that and perhaps some of the initial luster wore off on some of those too, but it sort of illustrates why I don’t want to do just what everyone else does because it’s popular. I know that was painful to read but it should be clear why I don’t do bucket lists!!! BTW, I still believe the Allman Brothers are the best band ever!

If I did have a bucket list, I know that I would have filled it up many times over with my wonderful memories and experiences that I have with Family and Friends. I have no regrets and I can’t think of any other things I still need to do.

Now, unfortunately, I have this “Bad” bucket list that I have had things added to without my desire or permission. Like Cancer. Who would ever want that? And now radiation. I can certainly say I never would want that. No one ever does want either of these and certainly not chemotherapy. But a fair share of us have these monsters thrown right in our bucket list and not gently placed but slam dunked!!!

But enough stalling. This post is about my Y90 procedure I had last Monday, September 17, 2018. I arrived at the hospital about 8:00 am and they checked me in and Shelia and I were taken back to the surgery waiting area. I really wasn’t too nervous since I had already had the procedure to perform the mapping about 10 days prior. The nurses were getting me hooked up with all required paraphernalia such as BP monitor; Pulse monitor; heart monitor; and of course, the IV line to get the required drugs in my system.

Dr Steven’s came in and I had another surprise. (They seem to be in large numbers for the unsuspecting cancer patient.) After all the interactions with the doctors and nurses, this was the first time I was made aware that the Y90 would be given in two separate applications. Today, they would place the radioactive beads on the left side of my tumor and its blood supplies. The second one would be in about 7-8 weeks, but only after some testing after 4-5 weeks to see if my liver tolerated the procedure well and whether it had the desired effect. They ALWAYS do it in two applications. LOL

Of course, this conservative approach is to minimize radiation damage to the good liver and not throw me into RILD. This makes sense, but it does mean that any surgical intervention would probably be in January or February instead of around Christmas. I was so looking forward to Christmas in New York!

The good news is that I didn’t have the back pain I had last time. They were able to place a closure device in my artery this time, so I only had to lay flat for 2 hours. Plus, after I complained loudly about my last procedure I do believe they gave me extra pain meds just to shut me up. It all worked!

I went home midafternoon, rested for a while, took a pain pill, and went to bed. I wasn’t doing too badly. Even the next day on Tuesday I was feeling pretty good except for the fatigue and even told the IR folks on the phone that my side effects were minimal. They reminded me that they vary from one person to the other and could be worse the second or third day after the procedure. They also reminded me that my radiation had a half life of about 60 hours and would remain in my body for about 30 days. They cautioned me to avoid close contact with others, especially pregnant women and babies for a while. And to avoid regular close contact with others for more than a few minutes at a time for at least the first week or so. I am radiating now so hugs are limited for now.

The next blog will demonstrate just how wrong it was to be optimistic this time.

Let me again give thanks to all my wonderful supporters who continuously show me love and support! Thank you and I love each of you!

Hope Is All You Need

Gentle Readers,

I apologize for this lengthy post, but it has a lot of pertinent information that I think is important to share.

Since my last post my mind and my thinking have been unclear on the best treatment option for my cancer. The main reason for that is I reached out to the Provision Proton Center to see if they had an alternative treatment to the Y90 that I detailed in my last post. I had a couple of my Toastmasters Club at Dowell Springs friends suggest that I reach out and it made sense.

I had not seriously considered the proton therapy for a couple of reasons. The first is that there isn’t a lot of information regarding Proton Therapy being a treatment for liver cancer. The second reason is that there is no information that I have found that compares the outcomes for these two radiation treatments. And of course, neither UT nor Sloan Kettering endorsed Proton Therapy when I asked about it. Of course, they would steer toward the more practiced treatment as expected.

The Provision Staff were wonderful in getting me set up with Dr. James Gray, the Medical Director, who was in from Nashville. Provision is building a new facility in Nashville that is state of the art. Memorial Sloan Kettering is building a $ 130 million center in Harlem. That would certainly indicate that Proton Pencil Beam Therapy is a treatment that will be more widespread with many more applications in the future.

Dr. Gray was extremely thorough and spent quite a bit of time with us going over every aspect of the possible treatment. He indicated that the Proton Therapy could better pinpoint the tumor without harming healthy liver tissue. This is important since the liver is very sensitive to all forms of radiation treatment and many patients go into liver failure and die even though their treatment may be working.

At the end of our time Dr Gray informed us that he thought I would be a good candidate for the Proton Therapy with a pencil beam targeted approach. He suggested that I would need around 15 treatments conducted 4 or 5 days per week. Treatments would only be about 20 minutes each  and I live about 5 miles away so a very minor disruption to my schedule.

The only problem in the treating radiologist would be Dr. Meek who was out of town for another 10 days or so. I would have to see Dr. Meek and if he agreed with Dr. Gray (He almost certainly would) then I would have to have a simulation where they measure and equip me with all the devices and apparatuses that I would need to stay still during my treatments. Another interesting aspect is that with any general or targeted external radiation treatment the movement of the liver caused by your diaphragm moving the liver creates a moving target and that must be planned for. Complicated, of course.

Leaving the center that day it seemed like I had another pretty good option. But if you knew much about Shelia and I and our combined experience with cancer and its treatment you would know we are relentless. We pored a lot of time and energy in trying to find out more about the two treatment options. The internet is a wonderful research tool in that there is a wealth of information available.

The problem with much of the medical information and the resulting conclusions is that it tends to be biased in many cases. Not always of course, but clinicians and medical institutions tend to report and document the treatments that they perform and/or are familiar with. So, head to head comparisons of results are rare.

Shelia and I both were searching the internet anytime we had a free moment and we would instantly share pertinent information with each other as well. It is not a surprise that we interpreted the articles differently some of the time but with both of us digging we found a lot.

One of my concerns was that since I already had my mapping done and had scheduled the Y 90 treatment for Monday, September 17 what would a delay mean as far as allowing my tumor to grow and potentially metastasize which would be a devastating game changer. I had looked at a reasonable time frame of staring the Proton Therapy by the end of October which would almost 3 months since my diagnosis and that really worried me. Shelia and I talked a bunch about this and we agreed that if we could start the proton therapy around the first of October AND we also still thought it was the best treatment option, then that would be the way to go.

I called Provision and they were so responsive. The best we could do was to see Dr. Meek on September 17, have the simulation and fitting on the September 24th, and begin treatments the week of October 8. At this point we were leaning heavily toward that. In the meantime, we continued to research both options.

Primary liver cancer that is as large as mine is (9 centimeters) is very serious and without treatment the life expectancy can be as little as 3 months. In addition, my cirrhosis also means that any treatment could put me in liver failure and I wouldn’t last long. That is why it is so important to get my affairs in order and try to enjoy what is left of my life no matter how long it is. Please keep in mind that all treatments we have discussed are considered palliative unless we can shrink the tumor enough to warrant surgery. This is an important point as you will see at the end of this post.

In collecting and analyzing information regarding the two radiological treatments we found a lot of information. For instance, one article from the Mayo clinic indication that the Y 90 treatment had been known to extend life expectancy from 3 months to 2 years. Another study indication that the Y 90 could have a progression free period of up to 12 months and increase life expectancy to 18 months.

An article on Proton Therapy indicated that it was a good choice for people who had large primary liver tumors. Another article indicated that the progression free time and life expectancy could also be extended by a few months. Another factor is that liver cancer is not a frequent cancer in the United States currently. That means that available research dollars are not as much as for many other cancers, so treatment options are limited. And it doesn’t always have clear symptoms, so it is usually not detected where their will be good outcomes. Another factor is that many patients who are included in the studies are sick with other co-morbidities so many die even when the treatment is somewhat effective,

And then there were really no comparison studies between these two treatments and we could find and no real consensus by my caregivers. I hate not having a plan and not being able to hone in on one objective at a time. So, you can see how the information overload had me a tiny bit anxious. It would be a perfect time for a couple of glasses of dry red wine and a good soak in the hot tub. But I am off alcohol forever!!!

So being the planner I am I reached out to UT to try to postpone my Y 90 procedure until I saw Dr. Meeks on the 19th to discuss the Proton Therapy. That is when the fight started! When I discussed what I was wanting to do the Nurse Practitioner indicated that the Y 90 radiation beads had already been ordered from Australia (Who knew?) and that I need to be concerned about my lifetime radiation exposure and why the Interventional Radiologist still thought that the Y 90 would be the best way to go. He also mentioned that they cost $30,000. Did he try to guilt me? I told him I need to think about it. At that point I was leaning heavily toward the Proton treatment. That was Tuesday of this week.

The next day I called back to UT and this time the Resident working with the Radiologist called me back and I again stated that I wanted to postpone the treatment. She indicated the beads would only have a few days where they would be effective, so postponing was not an option. She also threw out the notion that even if I didn’t have the treatment then my insurance would still be billed. Guild Card number 2?

I think it is very important here to state that if I thought that the Proton Therapy was superior I would gladly dig my heels in and do what I thought would be next to save my life or at least extend it for as long as possible. But that’s the rub. I was not sure which treatment would be best for me. I was indecisive. Shelia and I continued to discuss, and we kept going back and forth. Shelia prayed for the answer.

The answer came on the way back from meeting Shelia’s two cousins for breakfast in Maryville yesterday morning. They were in town to make some arrangements for their gravely ill Aunt. Phyllis and Barb are fine women and it was a joy to catch up with them. After our time together, we were on the way back to Knoxville for the Dowell Springs Toastmasters meeting and my phone rang.   I normally don’t answer calls from an unknown number but with all my medical issues lately I now answer every call. This was a call from New York.

You may remember that I discussed Dr. Peter Gingham in my New York New York blog post. He is the liver surgeon that I saw at Sloan Kettering. I surely didn’t expect to hear from him, so I was thrown for a loop during our conversation. As you recall he indicated that I wasn’t a good candidate for surgery at the time I saw him. So, what he said was a big surprise. A good surprise.

He indicated that he had been going over all my scans and other documentation and he said that the smaller mass in my liver was not likely cancer at all but just a small mass. He indicated that after I had the Y 90 procedure and if it was effective as he thought it would be, then he felt like he COULD perform surgery and remove my tumor. What!!!!!

After the Y 90 procedure I would have a scan in 2-3 months and if the progression was stopped and/or the tumor was reduced then it’s a real possibility that surgery would be an answer. Normally the only real cure for cancer is to cut it out and prevent it from spreading. I could not believe what I was hearing but I had my phone on speaker, so Shelia heard it too. That is why you travel to Sloan Kettering in the first place. The top doctors are always looking out for their patients and trying the best way possible to treat them. And they are the ones making the call. Not an assistant or Nurse Practitioner, but the head guy! Just awesome!!!

At that point I asked him his opinion regarding the Proton Therapy vs the Y 90 and he said that Proton Therapy is a rapidly growing therapy that has great promise but, in his opinion, there isn’t enough clear evidence that for my liver tumor that it would be more effective than the Y 90. Although Dr. Gingham is not a radiologist, he is indeed one of the top liver cancer surgeons in the United States and I must believe he would have a better opinion than almost anyone regarding treatment for the liver. That made my decision of which treatment to pursue very easy.

When we got off the phone with him I immediately called and confirmed my Y 90 procedure at UT this coming Monday and called and cancelled my appointments with Provision. Shelia prays about everything and she believes like I do that things happen for a reason and when one path is blocked then another one opens for you. On the surface it looked like the New York trip was not beneficial but in retrospect it was great that Shelia took the initiative to contact them. We don’t know at this point what the future holds but I now have much more hope than before. And without the Doll’s initiates and the trip, we would have fewer options.

Shelia mentioned the new hope on the way to Toastmasters and when we arrived there was an opening for a speaker slot, so I jumped right in and presented a 5-7-minute speech off the top of my head and without any practice. It was the easiest way for me to update my Toastmaster friends of my situation. The last couple of weeks I felt like the outcome of my liver cancer would be very bad, so suddenly, I had something to hope for in the fight of my life.

With my new perspective I feel like I did a pretty good job and showed some renewed energy with a speech entitled “Hope Is All You Need”

In so many cases hope is the only thing you need to have to push on and pursue the answer, not just in a medical battle, but life in general. Without hope we don’t move forward and achieve the things that are possible. Without hope we may just give up on a project, a job, or even a relationship. This should be a lesson that we should always have hope even in the face of overwhelming odds against us. Hope gives us courage enough to push on even when we don’t feel like it. Hope is the beginning of motivation and achievement.

Again, I want to thank each one of you for your love and support!

Love, Jim

Emotions 101

As can be expected after a relatively new diagnosis of a very serious liver cancer, the expectation is that my emotions are all over the place. I even suggested that in one of my early blogs. In this post I hope to explain and articulate just how I think I feel around the core emotions of happiness, sadness, anger, fear, surprise, and disgust.

This will not be easy to write because it is rather difficult sometimes to show your vulnerable side, especially when the story is about yourself.

If you know me, you know I tend to be a very positive person. I always tend to see the glass as completely full, maybe half with liquid and half with air, but full nonetheless. I remember a long time ago some of my co-workers at TVA nicknamed me “blue sky” since I almost always came down on the positive side of any situation. I have always been like that.

I can see how that could irritate folks to a certain degree, but it is the only way I knew how to respond. I am sure that Teresa and Shelia both felt like I was overly optimistic in my approach to their respective cancers. Although I must say that Teresa had a phrase she used a lot, even when in dire straits. She would say “It could always be worse.” Wow, that is powerful! And she was brave.

And Shelia had a purpose to her pushing to beat her cancer and that was/is to take care of Haylee and Ivan even when she was going through the brutal Chemotherapy and radiation treatments during the last year. And she wanted to be a great wife for me and she has been. I truly admire her for that quality that not everyone possesses.

I can say without a doubt that I have had the privilege to be with two very strong women and I believe that their strength always helped me in my efforts to hit things head on. I love them both for lifting me up.

But what about me and my emotions?

Let’s talk about the emotion of surprise. I little over a month ago I had no knowledge that I was seriously ill. I had a bit of fatigue going on but no other symptoms. I just thought my episode was a bout of food poisoning. It was a huge surprise that I had a tumor in my liver that was malignant and was well on its way to killing me. The ironic thing was that as the happenings played out it was more like I was watching a tv show about someone else’s life. When I did find out that the tumor was cancer, I really wasn’t surprised. I had been hoping for the best but somehow expecting the worst. It was the worst!

I couldn’t say that I haven’t experienced happiness because my family and friends have made me feel safe, connected, and loved. Especially my wife, Shelia and daughter, Brianne. They show concern but, in a way, that I know they love me completely and hurt for my situation. With all the good things that have happened in my life I should be a bit happy. And I am happy that I have such a great support system in place. I think that makes sense.

Fear is one emotion that I must experience about now. Mainly fear of the unknown. I still haven’t figured out the treatment plan so for me just yet and the not knowing causes quite a bit of anxiety. I know I am not afraid to die since I feel secure spiritually. I know if it is my time to go on to the light soon or stay in my earthly journey for longer, it is part of my soul’s plan. That does give me comfort even though the human part of me is not wanting to go.

I have no reason to have any disgust or anger. Although if there is even one little bit of anger I must look in the mirror. When I had my gastric bypass surgery in June of 2015, Dr. Colquitt told me my liver was large and I had cirrhosis because of my fatty liver disease. He said at that time he couldn’t guess what the long-term effect would be, but liver cancer was not outside the realms of possibility. Shelia and Brianne were concerned about that situation but honestly, I downplayed it. And after I lost a lot of weight and started feeling great I rarely thought of it. If I had taken it more seriously I might have gotten a scan every six months and the possibility of finding the tumor much earlier would have been a reasonable expectation. But anger at anyone else or myself would not be productive at this point. So, no, I am not angry.

Sadness flows through our bodies when we are experiencing some form of loss in our lives. Whether that loss is around something as contextually insignificant as dropping our ice cream cone on the ground, or as devastating as the end of a relationship or losing a job or a loved one that we adored.

Many people go to great lengths to avoid allowing themselves to feel sadness. I am usually that way as I have stated but I must confess that I have had a few pity parties in the last month and this weekend I have been depressed to the point that I have not done much but lie around and feel sorry for myself. My usual positive attitude is nowhere to be found. I am sad. I have shed more tears this weekend than in a very long time.

Anyone would certainly give me a pass to be sad since I have serious, probably terminal, liver cancer. But I must look at just what it is that is causing the sadness. I discussed my feelings with Shelia a little earlier and I believe it is not what I will miss about being here with my earthly loved ones. Because I will be surrounded by my spiritual family and free from the shackles of a physical existence with all the pain, anxiety, and uncertainty that goes with being human. I will be an all-knowing pure soul who will be able to always see what is happening with the humans I leave behind and what they are experiencing in their lives.

I think I am so sad because I won’t be there for others in the way that I have been. I won’t be there for my grandchildren’s important events.  I have always prided myself in being there for all my family’s important events, so they know I love them and want the best for them. I can only hope that someone will remind them if they don’t remember.

I won’t be there for my children when they need me. Brianne shared with me that I had always been there for her and I really feel so good that she told me that. It means so much. She is an amazing woman much like her Mom. And even though Tony doesn’t rely on me much I know he still needs me sometimes.

I won’t be there to hold my Doll, Shelia. To lay with her and stroke her hair and rub her neck. I won’t be able to caress her until the goosebumps rise up on her arms and look her in the eyes and tell her I love her. She thrives on that and I know how lonely she will be. That is very sad for me because I so want to be with her longer than I probably will be. She has meant so much to me in our time together and I hate that I won’t be able to comfort her when she needs comforting. Yes, that makes me very sad.

Hopefully over the next few days when I have more direction about my treatment plan and I continue to get my affairs in order I hope to break out of this unfamiliar funk that I find myself in. I can’t afford to let it consume me and keep me from fighting this monster that is lurking inside of me. Frankly, its not my style and the feelings I have are quite a surprise for me.

My next post will probably be about my chosen treatment plan and how I plan to respond.

I want to again thank everyone who has sent prayers, positive energy, and support to me and my family. I love all of you for it!

Mapping 101

In preparation for the local Y90 radioactive treatment for my liver cancer I had to have a mapping done of my liver arteries, so the interventional radiologist can place the right amount of radiation beads and in the right place. Here is the technical information.

Radioembolization treatment is a two-stage outpatient process: the preparation/mapping stage and the treatment stage. In our institutions, patients are carefully evaluated, often incorporating multidisciplinary evaluation from medical oncology, surgical oncology, radiation oncology, transplant surgery, hepatology, and interventional radiology. After clinical evaluation by interventional radiology, appropriate patients are scheduled for an angiographic preradio embolization mapping procedure, with a treatment date preselected 7 to 10 days after the mapping procedure.

The mapping procedure serves two distinct purposes. First, delineation of the hepatic arterial anatomy is important for eventual dose delivery and to avoid nontarget delivery. Variant hepatic arterial anatomy is common and occurs in up to 45% of patients. Determining and isolating the hepatic arterial branches perfusing the tumor(s) can help avoid possible complications. In addition, this procedure may be used to exclude, by means of embolization, hepatic mesenteric collaterals.

Now let’s break it down. Essentially the radiologist had to snake a catheter up through my femoral artery to my hepatic artery and go in and map out the blood supply to my tumor. He does this while viewing it on a scanner. I was awake the whole time, but they gave me a little pain reliever and a little anxiety medication since I had to be able to hold my breathing while they scanned. Every so often I was told to breathe in and out, and then hold my breath. It wasn’t too long so not uncomfortable.

The procedure took a couple of hours and the only unusual thing was that they could not use a closing device on my artery to make sure I didn’t bleed. Instead they put pressure on the entry point for quite a while and then put a big bandage there. I Was told that about 50% of patients couldn’t use a closing device so I am not so special after all.

The downside to not have a closing device inserted was that I was required to lie flat on my back and not even raise my head for 4 hours after the procedure. That was when the trouble started. While I was on the 4-hour clock I had to be wheeled down to nuclear medicine to ensure that the mapping was done correctly. If you have ever had a scan you might remember that all the scanning tables are metal and flat with absolutely no lumbar support. So, they moved me from the gurney that at least had a somewhat soft mattress to that hard, cold scanner surface where I had to lie flat on my back and very still for probably 30 minutes or so.

By the time we were through and they moved me back to the gurney for transport back up to my recovery room I was starting knot up and have pain in the small of my back. By the time they got me back up to my waiting area where my sweet wife was waiting I was in full extreme pain mode. And I still had almost 3 hours to go in the position. I really don’t recall the last time I have had pain that intense. The nurse asked me what I thought the level was and I believe I said about 8. He said that he would check with the Doctor about pain medication but alas, I never received any. The pain just wouldn’t get any better. With the help of my Doll, Shelia, I finally made it the fours hours. She was a saint while I was hurting and cursing for what seemed like an eternity. The next time I go in on September 17 I must figure out a way to avoid the pain. It was excruciating. And the procedure part was essentially painless and a piece of cake!

The good news is that the Doll felt sorry enough for me to stop by Yassin’s Falafel House to pick up a vegan Falafel Sandwich with tahini sauce. It was to die for!!

The next procedure on September 17 will start my treatment journey in my battle against the Monster. I don’t know which way it will go, and I know there are some risks and side effects of the radiation but one step at a time in my battle to stay around.

Again, I want to thank all my family and friends for your support and positive thoughts coming my way. I have never been a quitter and with everyone rallying around me I won’t be one now.

The next blog will be a little insight into my wide array of emotions and thoughts that I am forced to consider since I received my cancer diagnosis. A little preview would show that I am running the gamut of emotions which is quite normal I suspect. I want to be honest and straight up about how I feel, and I hope I can communicate that effectively.

Love and Hugs, Jim

New York New York!

New York, New York!

I have heard it said you either love New York, or you hate it, I mean New York City to be specific. Put me down in the column of loving New York. I say that from the standpoint of both my knowledge and my limited experience of time spent in the City. Most of the time spent there is somehow linked to cancer, both the Redhead’s and now mine. What a terrible reason to be in New York but if I am in New York I am trying to enjoy. We did enjoy this briefest of trips but that is for another blog entry. This is all about my liver cancer.

We have been extremely fortunate to have one of the best Surgeons around in Dr. Keith Gray at UT. He has performed surgery on the Doll and her late daughter, Mandy. He is like a friend who is also a kick ass surgeon. I too have jumped on his bandwagon and he has embraced me as a patient. I have every confidence in him

The reason for our trip to NYC was to visit the splendid doctors and staff at Memorial Sloan Kettering Hospital. The hope was to have some other procedure that would shrink the tumor or a radical new surgery that might be effective. Memorial Sloan Kettering is well known as one of the top cancer hospitals in the whole world and you can tell from the other patients there that they hail from everywhere. They have come there for lots of reasons. A second opinion on a very difficult case; to obtain top notch treatments not usually available in their hometown; and sometimes to participate in a last-ditch clinical trial in a desperate attempt to continue living. The several trips that Teresa and I made were in all three of those categories.

Here is how they stack up. https://www.glozine.com/lifestyle/10-best-cancer-hospitals-in-united-states.html

One of the reasons that I didn’t hesitate when Shelia helped by setting up the consultation is that my experiences told me that I would be treated with love and kindness from the entire staff at the hospital: that the doctors that I would be seeing would be at the top of their fields; and that if they had any answer for me it would be the best course of action. I also knew that there was a chance that they would tell me that what my plan of action here in Knoxville was a solid approach.

We were fortunate to get a direct flight to Newark Airport and back with United. The hospital schedulers worked with us to ensure we had enough time to get to our appointments. We left on Monday morning at 8:30 and we had two appointments scheduled with oncologist, Dr. Wungki Park, and liver surgeon, Dr. Peter Gingham. There was the possibility that we would also see an interventional radiologist, so we thought it best to stay overnight and fly home the next evening. We stayed at the Wellington which was a nice older, distinguished hotel near Central Park and Times Square.

After getting to Sloan Kettering and filling out a ton of paperwork and submitting my various CT and MRI scan we were I the que to see Dr. Park. The meeting with Dr. Park was very good. He asked plenty of questions and explained that since I wasn’t in a chemo treatment or a clinical trial now that he would act more as a coordinator for me with the other doctors. He shared with me that Dr. Gingham was one of the top liver surgeons who dealt with difficult cases like mine. That was encouraging for sure.

We had to go downstairs to the 3rd floor and fill out more forms and wait to see Dr. Gingham. We met with his nurse for some vitals and then his colleague, Dr. Cohen came in for some preliminary questions regarding my condition and family history. My mom and several of her siblings all died with smoking related cancers but that was the only types of cancer in my family history.

I was so very impressed with Dr. Gingham. He gave us a diagram showing my large tumor in a very hard to treat location and the smaller mass that might not even be a cancer. (Image in the post with tumor in green) He explained what surgical options are used when possible. Dr. Gingham confirmed that my tumor was too large for resection at this time. He explained that one method to shrink a large tumor was with a needle ablation directly into the tumor using a heat source to shrink the tumor. He also explained that the tumor size could cause complications and cause my liver to be unstable.

The other methodologies were all embolization techniques to starve the tumor of its blood supply and therefore shrink the tumor. I have already shared on the blog both the local Chemo and Radiation therapy. Both send beads into the blood supply to the tumor and use the radiation or chemo to also shrink the tumor.

He also mentioned that embolization can also be tried with just microscopic beads with no radiation or chemo involved. He explained that all these treatments could be effective, and all have some advantages and disadvantages.

One of the last conversations was that he could go in and take out the tumor but that I would not like the results since there may not be enough healthy tissue to keep from going into liver failure and survive. And it could also spread and that it would be too risky.at this time.

So, the result was that he concurred with my treatment plan in Knoxville and said my choice to try the radioactive bead (TheraSphere – Y90) first and monitor the results was valid. This alone was worth the trip to me.

One very encouraging conversation was that if we could adequately shrink the tumor to 5 CM or less then it would meet the criteria for resection. This is the same analysis   that Dr. Gray at UT has. If it meets the criteria and I have enough good liver left, then resection could be curative. That is a stretch at this point but certainly a goal to stretch for.

He went on to say that if we could shrink it enough and we had stable disease (Cancer is still local to the liver) that I might also be eligible for a liver transplant where they remove my entire liver and replace it. There is a catch for this one though. Since my liver function still is and should be stable then, I would not be eligible for a liver transplant list.

So, the only way for a transplant even if I meet all the other criteria is to receive half of a living donor’s liver. This is possible since a person’s liver regenerates and grows back to where it is supposed to be in a relatively short time.

This is one remedy that I would be very reluctant to pursue. Even though it is a procedure that is done a lot it still has a lot of risks to the donor and even if they meet all the criteria as a match, I just don’t see asking anyone for that.

I will close with a couple of things. First the Doll and I managed to squeeze more fun into our two-day trip than we thought possible and we will be sharing that later with a lot of pics.

The second is that I did undergo the mapping procedure today at UT and will post all about that tomorrow so stay tuned.

I do want to thank all of you who have sent prayers, healing energy, good vibrations and positive thoughts to us. And thanks for following the blog to see how I will be doing over time. Thank you all for your love and support!!

Love and hugs, Jim

 

 

[JJ1LiverDiagramDrGingham]

[JJ2]