Ebenezer

Part of the purpose of this blog is to not only communicate with the many who ask about how I am doing, but to also chronicle the different aspects of the cancer battle. Therefore, I think I need to take a moment to discuss some of the recent months in my life, to raise an Ebenezer, if you will (1Samuel 7:12), and to declare, "Hither by God's help I am come."

The period from late September 2015 to early February 2016 can be described as life going from difficult to very difficult to bizarre. The transition from difficult to very difficult was from late September to late November, as pressures and demands at work increased, coupled with the rising level of cancer in my body rendering my body less able to meet the demands of work and ministry. After Thanksgiving, we moved into the bizarre stage with the intense physical pain in hip and leg, and coping to survive that is almost beyond my ability to believe. Only Carol knows a measure of what that time was like for me, and I have only an inkling of what that time was like for her. Fortunately, I think those memories are fading with time. We went down several blind allies of misdiagnosis and physical therapy, and the holidays are just not a good time to try to things done in the medical community. But it was a time of spiritual growth and seeing God's faithfulness in our lives.

The "bizarre" stage ended the day following an elder meeting at my church on the evening of 2/4 where I was in such pain I had to stand for most of the meeting. I was seated next to a fellow elder who is a nationally renowned neurologist in research, treatment, and teaching. After the meeting, he gave me a brief check over, and then interceded to set up a meeting for me with a pain specialist at University of Texas Southwestern Medical Center by 7:30 the following morning. As part of diagnosis (not treatment) I received an electrical shock along a nerve path that resulted in (once the shock wore away) in much reduced pain. The UTSW Pain Doctor also prescribed some steroids that began (along with heavy duty pain meds already from my cancer doc) to alleviate the pain. Towards the end of January, the cancer docs at Texas Oncology were getting back involved (I was on a two month checkup schedule) and a CT scan the week following the elder meeting of 2/4 identified a tumor between pelvis and spine that was pressing on the nerve, dissolving the bone and the real cause of the problem.

The cancer docs also confirmed what I had known all fall, that the cancer was back in full force and it was time to hit it with the chemotherapy again. The strategy became to first treat and eradicate the tumor with radiation therapy, and then to hit the cancer itself with chemotherapy. I was on what I call "light artillery" chemo for several weeks, with the "heavy artillery" to begin following radiation. Both drugs are oral, meaning I just take the appointed pills on the appointed mornings, and do not have to go in for infusions, a real blessing.

The "heavy artillery" drug is the same one that I was on several years ago that was very effective and without as many serious side effects as other drugs I had taken. It is very potent, very strictly controlled, and incredibly expensive, yet I have absolutely $0 co-pay on it. Sometimes, as Carol and I sit in our bedroom for our evening Bible readings and prayer, we just marvel at how much God has chosen to bless our lives. If things go with this drug as they did last time (and we pray they will), I will probably be on it for about a year, it will make me tired but not too sick, and should not stop me from ministry or work. Above all, we hope it will once again be effective at knocking down the cancer. Your prayers in this regard are much appreciated.

The Unraveling of the American Republic

I very seldom (like never) make political posts, yet it greatly saddens me to watch the unraveling of the American republic. Our republican democracy is not designed or intended to be a system where one party or another dominates to the exclusion of all others. It is supposed to be people working together to achieve something for the overall good. The Democrats shouldn’t get everything they want, the Republicans shouldn’t get everything they want. People should work together to get something that works and is reasonably satisfactory to all.

Two ongoing current events really bring this home. The first is the presidential election primaries. I hear next to nothing about a candidate who can work across party lines to get things done, just ranting and rhetoric about what the individual candidates glibly believe they can accomplish (get rammed through congress by strong arm tactics) if elected. I am one of the few who are troubled by having a “strong man/woman” in the White House. From the time of the ancient Romans through the fascist regimes of the twentieth century, republics have given way to empires because people wanted efficiency over freedoms.  Idle Romans wanted conquest and increased dole, European countries wanted strong economies and trains that ran on time, American congresses have failed to impeach presidents who blatantly trounce the Constitution. Uncaring populaces allow freedoms to diminish and republics to die in favor of one expediency or another.

The second troubling event is the current debate over replacement of the Supreme Court justice. All that is discussed on the news is the president declaring he will get his appointment pressed through onto the bench, and the opposing party saying they will block it, without even hearing who the appointment will be. There has not been ONE WORD on the news of “hey, can we work together to find one honest, fair and objective jurist in the entire United States of America that both parties can find acceptable, who will make decisions based on fair interpretation of the law, rather than on political bias?” That is the way the system is supposed to work.

I would be extremely disheartened if I did not believe that the One who controlled the affairs of nations in Daniel 5 is still the One controlling the affairs of nations today. It is my ongoing and earnest prayer at this time that God will in His mercy work to grant to us better leaders than we deserve in all levels of the Federal government.

February 2016 News

The December blood sample showed the cancer up significantly, and the late January sample showed it up a little more. The last few weeks have been a whirlwind of medical appointments, working, some feeling bad, and waiting for "the next doctor appointment" in just a few days to have something more definitive to write about. But here are highlights of what has happened, and where we plan to be going.

 

The CT Scan: On Tuesday, 2/9, I had a CT Scan at my cancer doc here in Bedford. The scan discovered a soft tissue tumor on my right rear end, where the pelvis connects to the lower spine (sacrum). According to the cancer doc, this tumor is what is pressing on the nerve and causing all of the pain and difficulty walking. Within the week, I should begin radiation treatments, also here in Bedford, aimed at breaking up the tumor. The radiation will not be as intense as most cancer patients have, and I should not have any burns to show for it. The CT scan showed the pelvic bone is intact, with no damage from the disease, but the tumor has eroded away much of the bone connecting the right pelvis to the lower spine. Both the cancer doc and the radiation doc believe this bone should grow back once the tumor is removed.

 

The bone marrow sampling:  On Wednesday, 2/10, I had a sample taken of my left pelvic bone marrow, also here in Bedford. This sampling also showed the pelvic bone to be intact, as it bent the needle he was using to get the sample. I was mostly out of it for the procedure. I saw the cancer doc yesterday and discussed results of that sampling. The cancer cells compromised 70% of the bone marrow extracted in the sample. No wonder I have been so tired of late.The highest it has been before is 64%, and 100 days after the stem cell transplant of 2013 it hit a low of 5%. This does not mean it is 70% all across the bone marrow throughout the body. Bone marrow is not a homogeneous material. The cancer is probably lower in most other bones outside the pelvis, and likely near 100% at the site of the tumor.

 

Resuming chemotherapy: The plan for attacking the high myeloma counts will be to resume "major league" chemo treatments, probably towards the end of the radiation treatment, so as to not have the two overlapping.  I have already begun some "minor league" chemotherapy of a steroid on Tuesday, 2/16 of this week. The steroid's main job is  to ease the nerve pain, but it has the added benefit of attacking the cancer that is causing the tumor.

 

The neurologist: In the midst of all this, a wonderful God-instance occurred. At our church's elder meeting on Thursday evening, 2/1, I was seated next to a fellow elder who happens to be a leading neurologist, with national prominence in research, treatment and education. He chatted with me following the meeting and asked if I would be willing to see a pain/neurology doctor who had been tremendously helpful to his dad. Of course, I said I would. That was at 9:30 PM Thursday. At 7:28 AM Friday, I was sitting in my living room, reading my Bible before going to work when my phone rang. It was the pain/neurology doctor's office calling to see when I could get down there. Carol and I spent the rest of Friday at UTSW getting examined and tested. We do not yet have those results back, but some meds she prescribed were immediately helpful, and one of the diagnostic tests where she shot an electric current through the nerve was amazing at stopping the pain (once the pain of the electric shock wore off) and getting the leg working again.

 

Whew! Sorry for the lengthy update!  Be sure to pray for Carol (almost) as much as me. I think this is in some ways harder on the patient-in-law than on the actual patient himself. In other ways, harder on the patient wins. Thank you all for your ongoing love, prayers, encouragement and support.

So what's up with the cane, Mr. Bennett?

As many of you are aware, I have had difficulty walking and been on a cane, walker, or at times even a wheelchair since Thanksgiving. I have not posted anything about it, because I kept waiting to try to determine the cause. All we knew was that there was severe pain in the hip.

First thought was, of course, the cancer, and second thought would be arthritis, but x-ray of the pelvic area shows the bone to be in good shape. It is, in fact the professional opinion of medical experts that I have a good-looking place where you sit.

Having reasonably ruled out other possibilities, it now seems to be injured/damaged muscles or nerves due to unknown causes, and I will begin physical therapy for the same in early January. Expectation is that I will be off of canes, etc., and walking normally again by end of January.

Regarding the cancer, I am scheduled to give another blood sample this week, and will post if there is any news to report once I get results.

Novemeber 2015 Update

There is no new direction to report from yesterday's visit with the cancer doc. The cancer continues it slow and steady increase. In the doc's words, "We're going to have to really get serious about making a decision (to resume chemo) soon," meaning probably next time. Then he said he didn't want to put me back onto chemo because I am so good-looking (or was it looking so good?). I will get another blood sample taken in late December, go see the local cancer doc again in February (if not sooner), and go back to Mayo Clinic in Rochester in March.

 

The long-awaited new cancer drug has been approved by the FDA, and should be available by perhaps January. It will be followed by another drug a couple of months later, and then a third one shortly after that. All that said, we will probably go back onto the old cancer drug that worked rather than one of the new drugs for two reasons:

1. Insurance companies and perhaps the FDA may require that a patient be shown to have 3 therapies that failed before being given one of the new (very expensive) drugs. I can perhaps meet this criterion, but the stronger reason is
2. We want to keep using the older drug until the cancer becomes resistant to it, then move on to the next available drug. Mixing drugs will create a cancer that is resistant to all of the them.

As always, thanks for the friendship and prayers.

A Nervy Game

In light of those we know who are in much tougher days of cancer than I, my health status hardly seems worthy of posting, but for those who are so kind as to consistently and sincerely ask how I am doing in regard to the cancer fight, here is the latest. I went to see the cancer doc on Tuesday to discuss results of blood sampling done the week prior. The M-spike increased this time from 3.1 to 3.3, which really isn't too bad, given that it is a slighter increase than normal, and it was over a longer period of time than normal, but as always it begs the question of how high is too high, and when do we start hitting it with meds again? 

 

We are going to continue holding off on the chemotherapy for now, but the doc is growing more nervous about it. On the one hand, you've got a it-doesn't-get-any-more-serious-than-this disease that you don't want to wait too long to treat, but on the other you have a body that is still in fairly good shape that you don't want to hit too soon with the chemo, coupled with a cancer that has a long established history of being a slow, smoldering increase. It's a nervy game to play. The doc is also concerned about some other indicators that the cancer may be reaching the danger level, such as a decreasing red blood count, and a decrease of some proteins called albumin that are made in the liver. So those will be watched, as well, as well, in deciding when to resume chemo.

 

Bottom line is that we're going to wait, go back in six weeks for a blood check with no doc visit, and then blood work with a doc visit in 3 months. The doc is still holding out and hoping that the monoclonal antibodies treatments get approved before I go back onto chemo. I guess that Carol and I are hoping that, too, and more.

 

Thanks as always for your friendship, support, caring and prayers.

The News for June 2015

I gave a blood sample on June 9, and went to see the doc this past Tuesday. The cancer went back up this time, but if you look at the cancer indicator levels over the past five months, things are pretty stable. The doc is not alarmed, and is calling to stay the course and have me come back and check on things again at the end of the summer.

The new drugs (antibody therapies) expected to be released in summer 2015 are not yet out. Once released, they will likely be very expensive, and insurance companies may require that certain less expensive therapies be shown to be ineffective for a patient before authorizing payment on the new drugs. We'll all just wait and see.

So for now, it is still waiting, watching, being at peace and going on with life, work, family and ministry until things turn different. I am working hard, feeling good most of the time, and getting tired a little easy.  Three or four times a week, I make it to the gym and swim anywhere between 1.0 and 1.2 kilometers (5/8 to 3/4 mile).

Thanks for the love and prayers, and caring enough to so often ask how I am doing.