December Update (or downdate)

I went to see the cancer doctor today. For the past two months, there has been a decline in the cancer-indicating M-spike, from 1.1 in early October to 0.7 earlier this month. This is the lowest it has been in six years. The decrease coincides with the time that I have been adding (somewhat on my own) low doses of a previously prescribed steroid to the incredibly expensive cancer drug. The doc attributes the decreases to the incredibly expensive cancer drug that is not hard on my body, but my review of the data favors (from a strictly human perspective) the inexpensive steroid that is very hard on my body. Anyway, we know who is ultimately behind any decrease and give thanks to Him.

As always, your friendship, prayers, encouragement and support are much appreciated.

Update October 2016

I went to see the cancer doc this week, and things are just about the same. The cancer has increased very slightly over the past 3 months (from 1.0 to 1.1). The blood is also healthier, which means the bone marrow is getting replenished and making good blood again. The doc is very happy with the low amount of increase in the cancer, the improvement in the blood, and my overall level of fitness. I can out-swim at least half of the old ladies in the pool in the mornings, but I do still get tired more quickly than normal.

The doc is not prescribing any change to the chemo treatment. I will have another blood test in early November, and see the doc again in December.

The prayers and encouragement are much appreciated.

A Doc Who Tells It Like It Is

I saw the cancer doctor this past week, and discussed results of the blood sample taken the week before. The cancer indicator is down quite a bit from last month, but up slightly from 2 months ago. For the past 4 months, the readings are 0.7, 0.8, 1.3 and 1.0.  What this means is that last month was an anomalous data reading, either due to a goofed-up test in the cancer lab (my hypothesis), or because I was sick at the time the sample was taken (Carol's theory). Throwing out the bad data point, we are seeing a slow and steady increase of 0.1 per month. I will get another blood reading in early September, but it will be two months before I see the cancer doc again, because even cancer docs need a vacation now and then.

The doctor is pleased with the slow rate at which the cancer is progressing and also with overall improvements in the quality of blood the marrow is making. He said that after another couple of months of this lower chemo, I might get to take a break from it. 

I asked him why it is taking so long for my leg muscles to heal and for me to start walking better again, and he said, "Because you're old." But, I countered that I could walk great in the pool, just not so good on dry land. He said, "Not only are you old; you're also fat." (Maybe not his EXACT words, but I think that was the logical progression of what he meant.) 

Thanks for the prayers, support and encouragement.

Stay the Course

Carol and I just got back from seeing the cancer doc.  The cancer indicator increased by 60% (from 0.8 to 1.3) over the past month. Initially, this concerned us greatly, but the doc is not worried about it. He does not consider it to be a trend until he sees it for two or more months in a row, and he is a very good cancer doc. So for now, we will stay the course at the "maintenance" level of 10 mg of wonderdrug per day, as opposed to 25 mg of wonderdrug plus steroids, which is the treatment level. On another note, the doc is very encouraged and enthusiastic by increases in the overall quality of the blood. As always, your prayers, encouragement expressions of friendship and concern are much appreciated.

Where It's At (or, more properly, At Where It Is)

After lots of tests, I saw the cancer doc this past week and had some more tests run, and just heard back from him on Friday. To place into perspective, the cancer was at its highest (and hardest) point ever in late January, five months ago. The cancer has now been reduced to about 1/6 of that level (from 4.5 to 0.8 on my cancer's scale), but the medicine we have been using is no longer be effective at reducing it. The cancer has leveled off, is no longer decreasing, and actually showed a slight increase this past time. The cancer doc has therefore decided to stop current treatment, and place me on lower dose on the medication (40% of current dose, and dropping the accompanying steroid treatment), with the goal being to limit future growth rather than attempting to drive the cancer down any lower. Next time it reaches an "unacceptable" level, we'll have to try some other medication, but at least now there are some other medicines out there. This is a marathon, not a sprint, full of strategic moves and counter-moves, and we knew from the outset it would hopefully be a long haul. Thanks, as always, for your prayers and encouragement.  

Good news, bad news, all kinds of news

Thank you for your faithful prayers in my regard. Here is what has transpired of late:

• Good news: The cancer-measuring paraprotein screen (used to be M-spike) is down from 1.2 last month to 0.7 this month. This is less than 1/6 of what it was when it hit its all-time high of 4.6 just 4 months ago in late January. On this past Monday, I began round # 3 of the chemo, and we are hopeful that it will be the last for this time. It would be great to be done with Revlimid/Dexamethasone after only 3 months this time, as compared to the 14 months it took last time. 
• Not really news: The chemotherapy is just as tough this time as it was in 2009-2010, but that is hardly "news." Maybe a little tougher since I am older, coming off or some rough treatments, and have a much more demanding job than I did back then. It is a roller coaster ride with good days and bad every week; today is a pretty good day.
• Bad news: As of the latest doctor visit and blood sampling, the bone marrow has not rejuvenated to produce good blood, especially red blood cells, and that is causing serious anemia. Consider that on Feb. 9, 70% of my bone marrow was occupied by cancer cells. We have killed off a lot a cancer, but the good bone marrow hasn't re-established and  started making good blood yet.  The anemia causes fatigue, lack of energy, shortness of breath, swelling, etc. I have started back to the gym, however, walking and "running" in the pool and even swimming short distances, and I think it is helping a lot.
• Other news: On Friday evening, 5/13, I took an ambulance ride to the ER because I was having a strong arterial fibulation (all 4 chambers of the heart beating rapidly, all at once, no regular rhythm), accompanied by chest pain, tightness of chest, shortness of breath, and pain in some extremities. I suspect it was due to the meds I had been taking, but cannot definitively prove it. After an hour, Carol got me to go to the Fire Station around the corner, and they got me to go to the ER. Prior to leaving the station, however, they gave me a shot of a medicine that got me stabilized.  The ER kept us for 4 hours running tests and things before we left for home at 3:15 AM. I have done some follow up tests with a cardiologist, but the cause of the fibulation still has not been determined.

Thank you so much for your prayers and encouragement on my behalf.

The Life is in the Blood

So what is going on right now is some good news and some bad news. The good news is that there appears to be significant reduction in the cancer, whether it is from the radiation treatment and its residual effects, the "light duty" chemo I was on for several weeks in Feb/Mar, or the "heavy duty" chemo I have been on for two weeks, or any combination of the above. I know that ultimately it all comes from the hand of my sovereign Lord.

The bad news is that the bone marrow is not making good blood, probably due to the radiation therapy whipping down the marrow, and the fact that the marrow is too gummed up with cancer cells to be very productive. This also comes from the hand of my sovereign Lord, who loves me with a love I am not able to begin to comprehend. As Job declared (Job 2:10) "Shall we accept good from God, and not accept adversity?" Anyway, I was forced to go in recently to get two units of a blood transfusion. There was no choice about it. The Bible declares that "the life is in the blood," and as I sat there for hours watching it go into my body, I had to agree, and was very grateful for it.

Ending Radiation and Resuming Chemotherapy

On March 28, I resumed the heavy duty chemotherapy of a drug that had been successful in fighting my cancer a few years ago, but not before I had a few adventures along the way following completion of the radiation therapy. The radiation had lowered various parameters in my blood to make it too low for me to start chemo. Then, an opportunistic bug came along just three days after completing radiation, that had Carol rush me to the ER with a high temp and me pretty well out of it, and kept me in the hospital for four days with what turned out to be pneumonia. I did not like being in the hospital, but God used it as a time when we could minister to others, and I certainly appreciated all who came by to minister to me during this time.

On March 28, I resumed the heavy duty chemo. As I said, this drug was effective several years ago at decreasing the cancer. At that time, I was on it for 14 months. Our prayer is that it will still be effective (that the cancer will not have developed a resistance to it) and that it will be effective quickly. Your joining us in that prayer will be appreciated.

Ring that bell!

On March 14, I completed my 14 sessions of photon radiation treatment aimed at removing the tumor between my spine and pelvis. The treatments were successful, the tumor was dissolved, pressure was taken off of the nerve which greatly relieved pain, and mobility was improved. Now the bone eaten by the tumor must repair, and chemotherapy will begin as soon as the blood is healthy enough to allow it. And it was a lot of fun to ring the bell!

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.