When we began this blog, we decided to limit it to the facts of my condition and the strategies to treat cancer for the purposes of keeping loved ones informed of my condition. However, besides physical, mental and spiritual are big components of this journey. For those of you who know me well you know that I have placed my faith in the God of Abraham, Isaac and Jacob and proclaim Jesus, the Jewish king, as my Savior. Without that faith, I’m not sure how I could cope with my condition.  The following is how I’m able to reconcile my faith with this cancer:

Isaiah 6:8  and I heard the voice of the Lord saying, “whom shall I send and who will go for us?” Then I said, “here I am! Send me.”

Routinely my prayers always include a request to God to use me, place me where I can have the highest and best impact for His kingdom and then give me the courage to GO. In addition, I always ask that He draw my family and friends to Him and that one day they all accept Jesus as their Savior. Maybe my prayers are in the early stages of being answered.  Maybe my new platform will allow me to share my faith with each one of them and present the gospel direct, loving, and crystal clear. If I can’t or won’t, this journey will have been in vain. However, if because of my condition I’m able to point all or some to the cross, then every single cancer cell would have been worth it. I know that I cannot save anyone but if can get them to take a look, I am positive that the Holy Spirit and the truth will win the day. I imagine 100 years from now when we all are together in God’s kingdom.

Isaiah was a prophet that roamed the earth about 700 years before Jesus’ ministry on earth.  Isaiah’s commission was a message of repentance to the nation of Israel.  He was abused, ridiculed, and ultimately his message rejected. My platform is going to suck beyond all imagination. Isaiah and I have learned that maybe you should be careful what you ask for or have a good idea of what the assignment is before volunteering. But if both result in glory to God and salvation to some, it will have been worth every step.

One final thought – One does not get to a “better place” by simply passing away, as you hear so often at so many funerals.  Romans 10:9 is a good place to start and grow in your faith from there.  “If you confess with your mouth that Jesus is lord and believe in your heart that God raised Him from the dead, you will be saved.”

Things have gone as pretty much as expected this week.  Every day since Monday, Jodell and I travel to Up State Cancer Center for my 15 minute zap.  My last one, until further notice, is tomorrow.  The treatments are quick, they don’t hurt, I haven’t felt sick….nothing.  So far this is what is most perplexing.  They tell me what I have is really bad but the treatments seem to be, almost a non-event.  I have had 1 immunotherapy treatment and, again, no nasty side effects.  I’ll certainly accept these conditions but my rule of thumb is that good medicine has to taste bad!  Anyway, radiation ends tomorrow and my next immunotherapy treatment is in 2 weeks.

The roughest part this week is the continued recovery from the week before.  I am still run down and sleep a lot and move gingerly when I do.  I appear to be about 6 months pregnant from the blood in my torso from the liver bleed.  Of course, you mothers know what comes with that; back muscle stress, etc.  Doctor says this will take about 2 months to get back to normal.

Finally, I had an appointment with my oncologist on Tuesday.  Besides the normal progress / game plan discussion, I asked him a question about a comment he had made early on.  His comment was:  If this had gone untreated, I would have been gone in about 3 months.  I said now that we have a handle on this and treatment is underway, what do you think my projected life span is now?  His answer:  James, optimistically I think you have 2 maybe 3 years to live.  Whoa!  was my thought.  Up until then I had assumed the goal in the fight was to one day be cancer free.  Now I think it is to extend the quality of life.  However, I am not giving up the cancer free hope.  They continue to tell me how rare this pathology is and put their heads together with the nation’s best in figuring out how to treat it.  So how do they really know how it will respond to treatment? 

Keeping the Faith – James

It’s great to be home. No more sleeping in a tangled ball of wires and tubes or to be woken when I am finally asleep to be told it is time to check vitals. Anyway, the plan going forward is for radiation treatment every day this coming week but as an outpatient. The radiation treatment will be totally focused on the tumor streamer that extends from my tumor in my liver to my heart, this is known as the tumor thrombus. I have already had one radiation treatment, yesterday, and physically it was a non-event. So not to bore anyone, I will refrain from putting up comments every day, unless something out of the ordinary occurs like a strange bowel movement. Stay tuned as I kick my liver cancer’s butt.

THERE’S NO PLACE LIKE HOME!!!!!

Heading home today! Details to follow.

If you are going to be a fly, be a big green one!

James returned at 8:15 pm from interventional radiology where the embolization of his bleeding liver occurred last night. He was exhausted, and frankly miserable. Lindsey and I tried to get him as comfortable as we could before leaving as we had been up since 4 am. They were giving him fluids and IV pain medication through the night as he was unable to move his leg for another 4 hours and the procedure itself can cause pain. The stenting of his Inferior Vena Cava that is 90% occluded was canceled. It was deemed too risky…they are afraid part of the Tumor thrombus will break off thereby causing a major heart attack, pulmonary embolis. or stroke. Last night, James complained of chest pain, EKG was slightly abnormal but cardiac enzymes are so far negative. However, he did receive another unit of blood giving him more oxygen carrying Red blood cells. James is going to start radiation today. The liver doesn’t like radiation so they have physicists working on how best to give him some radiation to shrink the tumor near where it is occluding the artery but not damage the portion of healthy liver that he has left. It is the only possible solution for this life threatening complication of this cancer at this point. His room is literally a revolving door, between surgery, oncology, IR team, radiation oncology, palliative care, pharmacy, spiritual care, nurses, residents for all the teams, people that mean well but wake him up to say hello. He is EXHAUSTED. They are also going to have a meeting of the minds (think tank) on Monday to see what else if anything they can do. The Oncologists continues to reach out across the country to find any research or Specialist that knows the best treatment for this very aggressive cancer. In the meantime, we are hoping the immunotherapy is working but we will not know for sometime.

Day 4 in the hospital. Nurses are checking blood levels three times daily, which since Sunday’s surgery has been decreasing slowly leading us to believe the liver is still leaking blood into his abdomen.  Doctors are not concerned due to the slow rate at which he is losing blood, however last night a CT scan was ordered to get a visual. This morning James received two units of blood and another CT scan. Yesterday, it was also decided that we need to stent the vein between liver and heart due to the tumor and clot combo which occupies 90% of the blood way. Opening up the blood flow and preventing any blood clots from coming loose causing further complications. To kill two birds with one stone tomorrow doctors will attempt to stop the leak in his liver, again, while at the same time placing stents in his clogged vein.  If everything goes as planned this will make him stable enough to leave the hospital within a couple days provided blood levels stabilize. James also received his first dose of Immune Therapy yesterday which is the main effort in fighting the cancer in liver and rest of his body. As of now he has had zero side effects from the treatment other than feeling tired due to his activated immune system. Doctors say they will not know whether the Immune Therapy is having a positive affect on the tumor until 2-4 treatments. (1 treatment/3 weeks)  James is mentally and spiritually well and remains optimistic that the Immune Therapy will work. James has requested that anyone wanting to visit hold off until we can get the surgery behinds us and he is able to leave the hospital.

Ryan

4-23-19 -The Diagnosis

Primary Clear Cell Variant Hepatocelluar Carcinioma.  Stage lV

This carcinoma is very rare and usually seen in Renal(kidney) cancer.  The tumor mass is on his liver about 20x17cm in size with a tumor thrombus extending from liver to Right atrium of his heart. There are also multiple lung metastatic disease in both lungs.  Most cancers have guidelines ie. If cancer is this type do this, If tumor is this size do this, if metastatic do this etc.  These are called NCCN guidelines and are followed by all that treat cancer whether you are at a big well known institutions like Sloan-Kettering, MD Anderson or a smaller institution like Upstate Medical Center and Cancer Center that James is presently being followed. For his cancer because it is so rare there are no guidelines.  His doctor has contacted Doctors at Sloan Kettering, Dana Farber in Boston and Roswell Park among others.  He plans to contact MD Anderson as James has family there but is not holding out much hope of finding any Doctors that can say what to do for this cancer.  Since Liver Cancer in general does not respond well to chemotherapy, he is going to treat as he would a renal clear cell carcinoma with immunotherapy.  The drugs he will be using are Nivolumab and Ipilimumab.  Both are monoclonal Antibodies which basically stimulate the immune system to fight the cancer.  They do not have the typical side effects  as chemotherapy, such as hair loss , Nausea, Vomiting, etc. however they can have some severe side effects such as Pneumonitis, Colitis, etc. that can occur.  We really have no choice.  The cancer is growing at an alarming rate and James doctor stated that James has 3 months or less if no treatment.  The most pressing issue is that the tumor is growing inside his Inferior Vena Cava, a vessel from the liver to the heart.  This vessel is 90% occluded.  They now plan to stent this much like they would in a heart procedure called a Cardiac cath.  This would hopefully prevent an occlusion of the IVC.  James as always remains optimistic and faithful.