DPD Tales

After our trip to the Mayo Clinic in Minnesota this summer, it took a few weeks to get everything coordinated to start the new agreed upon regimen of chemotherapy drugs - darzalex + polidimide + dexamethasone (DPD), but the first infusion got underway on 9/10, coincidentally the 11th anniversary of my multiple myeloma diagnosis. I had a severe reaction to the drugs during the first infusion, but we stopped, got me stabilized, persevered, and got the infusion completed without further incident in two days' time.

The second infusion the following week went well, but on Friday afternoon of that week, I had to leave our elders' retreat in Granbury, TX, to go to the local ER with an atrial fibrillation incident of the heart. They got me stabilized and released me that evening and we came home the following day.

I slept the weekend, and then Carol took me to our ER here in Bedford on Monday with shakes, fever and a variety of other symptoms. Turns out the chemo drugs had lowered my immune system and I had a serious infection. I spent the next full week in the hospital, mostly sleeping and getting treated, then another 10 days of mostly sleeping at home before returning to work part-time on Oct. 10. During this time, the chemotherapy was suspended. Oh yeah, that first night in the hospital included an ultra-late night surgery to remove a life-threatening blockage in the UT.

That said, we resumed round 3 of the DPD treatments on Wednesday of last week, 10/17. It went okay, but following the infusion, I developed severe pain in the lower legs which has left me virtually unable to walk, and I only get around with great difficulty.

Suffice it to say that these are powerful, powerful chemotherapy drugs. This is serious chemo, and I am not waltzing through it unscathed. Thus far, I do get to work a few hours each day, thanks to catching rides with friends, coworkers, and family. Some work can also be done at home. 
At this point, there has been no drop in the cancer due to the new chemo, but it is too soon to make a judgment at this time. 

God gives the grace each day to persevere and do what needs to be done. As always, your love, prayers, encouragements, and other expressions of concern are always appreciated.

Our Litttle Trip to Mayo

One of the many amazing things about the Mayo Clinic in Minnesota is its art. Famous artists and philanthropists from around the world have made donations to its collection spread throughout the many buildings in the complex. My favorite object of art is the Saint John's Bible, a 2' x 3' gold leaf Bible, written with hand calligraphy, illuminations and illustrations, took from 1998 to 2011 to make, and is the first of its style to be done since the 15th century. Each day, a staff member will go by, unlock the protective display case and turn one page of the Bible so that all of its 1,100 pages will eventually be displayed. Whenever I am at the clinic, I like to go by this display 1) to see the artwork, and 2) just out of curiosity to see what passage is on display that day. On Monday, it was open to the closing chapters of 1 Peter and the opening chapter of 2 Peter. There are some very encouraging verses in those chapters, but the first verse my eyes fell on was 1 Peter 5:7, "casting all your anxieties on Him, because He cares for you." I was not particularly anxious that morning, but it was encouraging nonetheless to be reminded of Christ's care for me.

On the medical side of things, Mayo measures myeloma indicators not done by my oncologist in Texas and determined a ten fold increase in these parameters since this same time last year. The Mayo doctor said this was serious. They also performed a CT scan and found new lesions in the bone caused by the cancer (fortunately not in structurally sensitive areas), also indicating the cancer is active. Both of which lead to the conclusion, however, that it is time to change chemotherapy drugs. While we were sitting there, she called my Texas oncologist, they conferred and agreed upon a new combination of drugs for treatment.

I will go to meet with my local cancer doc on Monday to work out details. If this is how we proceed, it has potential to be a much heavier and time-intensive form of treatment than I have been on to date.

As always, thank you for your concerns, prayers and expressions of encouragement.   - Daryl

Medical Tales of August

On Monday, Carol and I went for my regularly scheduled visit with the oncologist. Regarding the chemo drugs, the cancer essentially plateaued this month, with no significant increase or decrease. I am of the opinion that this type of chemotherapy has ceased being effective at fighting the cancer, and is actually doing my body harm with A-fib, shortness of breath, and other maladies of ilk. The evening prior, I had to go to ER with a serious A-fib episode, and the Wednesday following I received a transfusion, the third transfusion in as many months.

The doctor, however, is not ready to abandon this form of treatment. In all fairness, he needs to select a drug or drug combination that will effectively fight the cancer, while minimizing side effects such as those mentioned, or worse. Next weekend, Carol and I will go back to the Mayo Clinic in Rochester, MN (aka "the Pool of Siloam") for the benefit of their insights on what treatment regime to use from here on.

Basically, everything is on hold until we hear what the Mayo Clinic has to say, and then get back with my local doctor. God continues to give us strength to do each day what He calls us to do, and we trust and rest in Him. Thanks as always for your love, encouragement, prayers and support.

Two Salient Facts

Carol and I went to see my cancer doc this past week. Two salient facts emerged from the latest round of chemo that ended this past Friday night: 1) The chemo round was very hard, and 2) The chemo was not effective.

1) The chemo round was very hard.  The words do not come anywhere close to conveying the reality of the situation, but no reason to go into details here. No matter how bad it gets, I have only to look around and it is not long to find others in worse situations than me.

2) The chemo was not effective. Instead of decreasing, the cancer-indicating parameter actually increased by about 30% this time. The doctor considers this to be a "bump" but not yet a trend. We will go one more round with the current med, but may need to look to another drug soon. I already had an appointment scheduled for Mayo in late August, so we will go and gain the benefits of their insights.

As always, your love, prayers, encouragement and concern are much appreciated.

The Cancer Doc, June 2018

Carol and I made our regular trek to see the cancer doc a couple of days ago.

The good news is that the latest round of chemo knocked the cancer down by about 30% over the month's time. Blood chemistry also showed improvement, most likely because the cancer being reduced in the bone marrow is allowing the marrow to make better blood.

The bad news is that the latest round of chemo knocked me down by a lot more than 30%. The past three weeks have been extremely difficult, and I am not bouncing back as quickly as usual.

The plan is for me to continue with another round of the full strength chemotherapy, but I will delay its start by 4 to 8 days to give me more time to recover, but not much time for the cancer to do the same.

By the way, the cancer doc still says I am good looking/looking good. Thanks for all your prayers, encouragement and friendship. I thank my God for giving me strength to do whatever He has for me to do each day and to face every trial He places in my pathway.

What's Happening

The surgery I had two weeks ago today to remove the large kidney stone (more like a kidney boulder) went well and did me an incredible amount of good. I could tell I was better almost immediately after surgery. I spent a few days in the hospital, then came home to continue recovery. I am now working almost full days. Carol can give a list of "good health" things that I can do now that I could not do a short while ago, and "being sick" things that I no longer do that I was doing a short while ago. I am blessed to have her as a wife. While in my mind, I know she is right, all I can look at is how far from 100% I am. I guess I am now feeling good enough to feel somewhat bad.

I went to see my regular cancer doctor this afternoon. He puts a lot of stock in how people look and says I am looking really good. Carol agrees. What looking good means to a cancer doc, however, means that I'm probably healthy enough to resume chemotherapy for the myeloma, which has been on the rise during the break to fight the bladder and kidney problems. That cancer is the highest it has been in a couple of years. I will order the medicine tomorrow and get started back in a few days. The goal is to beat the cancer down and get the bone marrow to making better blood, which should fix a variety of problems related to energy, fatigue, breathing, etc.

Thanks to all for your love, prayers, encouragement and concern!

Daryl and His Recidivism

Here's just a quick update on some of my recent medical adventures, as well as some adventures planned for the next few weeks, based on meetings with doctors on Monday of this week through today.

Surgeries:  I will have two surgeries between now and May 1. The first one is a pre-surgery surgery tomorrow afternoon, 4/20. Its purpose is to install a drain to pull off infectious material to enable the doctor to see clearly on the 5/1 surgery, and to prescribe an antibiotic to take prior to surgery. Tomorrow's surgery should last about 90 minutes. They will keep me overnight and then most likely release me on Friday as part of their "catch, tag and release" program.

The 5/1 surgery is to remove a very large stone from one of my kidneys. They will go in by small incision, attempt to remove the stone by grinding and vacuum, and keep me in the hospital that night. The next day, they will perform a CT scan to make sure they got all the fragments. If they got it all, they will let me go home. If not, there will be a repeat surgery on 5/3. So, I will be in the hospital 2-3 days, then recover at home through 5/7.

We have a name for people like you, Daryl. It's called recidivism. Can you say recidivism, Daryl? Do you know what that means?

Chemotherapy for multiple myeloma: This last round was tough, but it did decrease the cancer by about 20% (overall decrease of about 40% since early February). I will need to discontinue chemotherapy until surgeries and recovery are complete.

Shortness of breath: The reason for my extreme shortness of breath of late is poor quality blood, likely caused by the bone marrow not making good blood due to the cancer, side effects of the chemotherapy drug, and lack of activity brought on by poor quality blood (#vicious cycle).

As always, our hope and trust is in the Lord, along with our gratitude for His sustaining power and provision thus far, and thanks to you for your friendship, encouragement and prayers.

Update March 2018

I went by to see the local cancer doc yesterday (for myeloma, the cancer in the bone marrow) to discuss test results on a blood sample taken last week. The bad news portion of the visit is that the bone marrow is not making good blood. I could have guessed that without the lab work. It could be that the marrow is gummed up be the cancer cells, which had risen a lot at prior visit, or it could be that I am still recovering from December's major surgery. Either way, it leaves me tired, short of breath, and somewhat dizzy a lot of the time.

The good news is that the brief time I was on chemotherapy this past month made a significant drop in the cancer level - it decreased by about 40%. Hopefully, both the chemo and the cancer decrease will continue and help clear up the bone marrow, and the marrow will start making better blood. We are now working with my new insurance company to get the next batch of chemo drugs ordered, and I will resume chemotherapy when it arrives, probably sometime next week.

Tomorrow will make 3 months since December's surgery. I will go see the doctor who did that surgery in early April, and then go back to see the myeloma cancer doc in mid April. I am still working partial days (thanks to a mighty God, a gracious employer, and a capable staff), but I have not yet been able to resume exercising. Perhaps as I can, that too will help with blood improvement and alleviation of those problems.

As always, thank you for you love, prayers, support and encouragement!

Cancer Fronts Update

It has been a very medically-packed couple of months since the bladder cancer surgery on 12/15, including two return trips with hospitalization stays, with entry through the ER. I have so much to give thanks to my God through all this, for His sustaining and restoring power, good medical care, provision of daily needs, and support of friends and family.

But more on the recovery later. Big news is that I went to see the multiple myeloma cancer doc (the first cancer) last week, and discussed the results of a blood sample taken the week prior. This cancer has increased by 50% since January 3, and by 100% since December 4, and it is now time to resume the chemotherapy that had to be put on hold for the bladder surgery. I still had the remaining doses of that medication, and resumed that chemotherapy last week. Other than that, the doc thinks I am looking and acting pretty good. I will go back to see him in a month.

So far as recovering from the bladder surgery, it has been a progress at first measured in centimeters, and then in inches, per day. Neighbors and all of our kids were a tremendous help during this recovery time. Following the latest release from the hospital in mid-January, Carol was too concerned about leaving me alone for the day, but had missed work for a month (many nights of which were spent sleeping on a hospital couch), and really needed to get back to work with peace of mind about me. She, some of our kids, and some folks at church set up a system for some of the retired men at the church to come and hang out with me in shifts throughout the day for a while. They were times of great fellowship that were much appreciated.

I would rate myself at about 50% recovered from the bladder surgery. I'm able to work about 4 hours a day, and still need lots of sleep. I went back into the pool twice last week, and walked about 600 yards in the water each time. I am still in the process of building strength, still learning tricks of dressing to cover my new hardware, and still investigating other hardware available to me.

Thanks for all the visits, prayers and expressions of concern during these past weeks, and in the future.

Guest Blogger Carol: If you're reading this, Daryl caved in and let me get by with a P.S. :-)  I have to say that Daryl is one of the bravest people I know.  He faces all of these trials with a deep  confidence that God will not allow any trial to come his way without it being according to His will.  This is a deeply safe place to be.  He often softens the truths of how hard this road is on him, and how many daily challenges both cancers have placed on his life.  He faces each day without complaint. Wow! These days have also held many joys...we got a whole month together to learn what we needed to do. We had the help of our kids and friends. People ask me how we manage it, and I quickly tell them we have not had to do this alone! Thank you all from my heart for the calls, emails, texts, gifts, meals, distractions and assistance you have given us. Even those who stayed away because of illness...that's love! Thank you for ignoring the fact that I have not written thank you notes for all the kindnesses! May the Lord's blessings be yours!

Post Op Visit

I had the post op visit with the urology surgeon this afternoon. He removed all sorts of tubes, patches, drains, staples, etc. (OUCH!), and sent me home with only permanent hardware remaining. The post-op pathology report said that the (removed) bladder definitely had cancer in the muscle wall, but the lymph nodes surrounding the bladder did not have cancer. In other words, they think they got all of the cancer, and I won't need to got through chemotherapy to kill any remaining cells. I will go back for a CT scan and check up in three months, but that's it with treatment for this cancer for now. 

Coming weeks will involve a continued slow recovery and learning how to live, dress, work, swim, etc. with the new hardware on my side. Thanks to all for the love, visits, care and help over the past weeks.

Meanwhile, back at the myeloma ranch

In the midst of many appointments, phone calls and website messages with doctors regarding the bladder cancer, I went to see my regular cancer doc yesterday. I came away from our meeting with 3 things:

1. He has really cool Christmas bow ties.
2. He was constantly affirming that we are doing the right thing with this bladder surgery. We spent almost the entire time talking about the bladder cancer and surgery and why this is the right thing, the only choice to be pursuing. He has really taken ownership of this cancer, too, with conversations with the surgeon Dr. Raj at UTSW, and that is very encouraging.
3. We barely spoke of the multiple myeloma, but he did observe from the lab work that it is not taking off and going crazy right now, so we can not worry with that chemotherapy at this time. I did manage to get in one week of chemo for the myeloma over the past month, and we actually saw a small drop in the M-spike.

This has been a very busy few weeks. In addition to doctors and insurance calls and emails, we have both been trying to get things ready at work to be out for a couple of weeks, or longer for me, and do a few Christmas items, too.

We will go to the hospital before sunrise tomorrow morning for the surgery. Thanks for the thoughts, prayers, and encouragement.

A Date Has Been Set

December 15 has been set as the date for the surgery mentioned in the prior blog post. I should be in the hospital at the hospital (UTSW Clements in Dallas) for about a week after the surgery, and then "in the hospital at home" for another week after that, which just about wraps up December and 2017. Following that, I should be able to transition back into a normal schedule over the month of January.

Thanks for so many expressions of caring and concern.   Daryl

Fighting Cancer on a Second Front

October was a pretty rough month. As many of you know, it started with my older brother dying at the end of September, which was a very hard personal blow to me.

Physically, I had outpatient surgery in October to remove a large bladder stone.  That outpatient surgery didn't go so well, and was followed by two visits to the ER, a couple of days in the hospital, and a lot of time missed from work as I laid at home recovering due to complications. It turns out that the mass removed was not a bladder stone, but a tumor, and the tumor was malignant. Because the cancer has invaded into the bladder muscle wall, it will also be necessary to remove the bladder. We have weighed various options, and several friends who have experienced the same have been very helpful with information. We are now in the process of selecting a surgeon to perform the procedure.

Because of all the other health issues, I missed a good bit of my chemotherapy last month, and the multiple myeloma cancer in the bone marrow has increased. Fighting that cancer, however, has taken a back seat and been put on hold until we address the bladder cancer.

Once we get surgery scheduled, I will try to post an update with details as to when and how long I will likely be out of commission.

Thank you for caring, loving, praying and encouraging.

Ten Year Marker

This picture was taken 10 years ago. It was taken on the evening of 09/10/2017, the day that I was informed that I had a terminal cancer for which there was (and still is) no cure. I don’t think I had shared that news with our children at the time the picture was taken. Naturally, I asked the doctor how long it would take the cancer to do its job, and the doc said, “We really don’t know, but the average survival rate for this cancer is 5 years after diagnosis.”

There have been so many good things that have happened to me over the past 10 years – two children have graduated from college, two children have gotten married, eight grandchildren have been added to the family either through birth or adoption, I made a mission trip to Kenya with my pal Charlie, taught in churches there and made some wonderful Christian friendships.  I quit my job to open a start-up office for another firm, and took the wild ride of it becoming a booming successful business. Through it all there have been the joys of ministry at our church and times with my family. Sure, cancer is tough.  It is a bizarre life that is separated from how normal people live by a great and impassable gulf. But God has blessed me through it to realize at least a portion of how much my wife loves me, how many people are kind and care for me, and to enjoy the pleasures of this world He has created for our delight. And through it all, He has caused me to grow spiritually.  

Since diagnosis, I have seen that 5 year (plus a little) average play out in real life, as some patients I have met and gotten to know made it more than 20 years before the disease prevailed, and others barely made it for 18 months. The message that I would like to pass along to others with this cancer is this:

1.       Your cancer is not an accident or random happenstance in the cosmic scheme of things. It comes directly from the hand of a heavenly Father whose love for you vastly exceeds your ability to comprehend it.

2.       You need to make your preparations to meet that Maker on His terms, and not your own fabrications.

3.       Your life may not necessarily be over just because you have been diagnosed with cancer. Some days it WILL stop you, and some day it may be the thing that stops you for good, but until then continue to live your life for your Maker and the ones you love, and enjoy the ones you love.

So, this post is just a mile marker, an “Ebenezer” to raise, give thanks to the Lord, and say, “hither by Thy help I’m come.” Thank you for reading, and thank you for your love, prayers, encouragement and support.

My Trip to Mayo

I want to give you a quick update on my visit to Mayo last week, and follow-up with my local cancer doc this week. I hardly recognized the place and could barely find my way around without all of the snow and ice. I am usually there in the winter.

It was a hard and fast trip - only 40 hours from the time I left the house in Bedford, flew to Minneapolis, drove to Rochester, spent the night there and then 10 hours at the Mayo Clinic, drove back to Minneapolis, flew back to DFW, and then arrived back home (thanks loads to Carol for trips to and from the airport). Salient items learned: 

• It is time to restart chemotherapy. The cancer has increased from 1.0 to 2.0 in the two months since I discontinued chemo. My doc at Mayo is the head of the hematology department there, and she spent a lot of time discussing various chemo options. I met with my local cancer doc yesterday to decide which treatment option to take. He asked what I wanted to do, I told him, and he agreed and ordered the prescription. I will go back on to strong doses of my previous cancer med daily, with a good helping of steroids on the side.
• The cancer has morphed from the easy-going, laid back cancer of years past into a more aggressive form of its prior self. I will likely need to remain on some form of chemo for the rest of my life, instead of the lengthy breaks I have enjoyed over the past years. I thank the Great Sustainer of the Universe, however, that there are medicines to combat this. I am grateful for the two months I have had off, and grateful for the meds to fight it.
• The skeletal frame is still intact. Other than the bone that the tumor ate away last year, ten years now and the disease has not attacked the frame. It has a tendency to create micro lesions through the bone but has not done so.
• The tumor does not appear to be re-forming. Pain that I have been experiencing that led me to believe the tumor might be coming back is from a series of parallel fractures (called insufficiency fractures) in the tailbone area that is growing back after the tumor destroyed it last year. These should be healed up and all better in 2-3 months.
• While there are a number of medicines available to me now, a very promising possibility a few (maybe 3) years down the road is Car-T cells. It is a medicine that acts like a transplant and may be able to take me off chemo. It has shown incredible success in trials. There is a trial coming up this fall, but I am too healthy to be admitted into it (a good problem).

Thanks to all for the love, encouragement, prayers and support.

Encouraged

I had a good visit with the cancer doc this afternoon, proving that the skies are not cloudy all day, every day. The good news is that I will be discontinuing chemotherapy for at least a couple of months. Sixteen months on the chemo is long enough, and I am very much looking forward to the break.

Don't misinterpret this as meaning the cancer has gone down. Overall, it has continued a gradual and fairly uniform increase over the past 12 months (unless I am taking the steroid dexamethasone). What it means is that the cancer isn't too bad and I am just going to take a break from the treatment once this cycle is complete later this week. In a couple of months, Carol and I will go to the Mayo Clinic for my 4 year stem cell transplant check up, then go back and see the local cancer doc on August 30.

As always, thanks for the prayers, encouragement, friendship and support!

April Update

I went to see the cancer doc today. The cancer has been slowly creeping upward over the past few months, since December, but he says I am doing real good, and am in good shape for a cancer patient. He loves that I am still swimming 3 times a week at a good distance and pace. 

Although I am doing fairly well, the doctor wants me to continue on maintenance dosing of chemo (what I refer to as the "lukewarm" approach to fighting cancer, neither hot, nor cold, nor much of anything else). I was disappointed to not check out of (and leave) the Hotel California on this visit, and I think that I kind of irritated and annoyed my good friend the cancer doc with constant questions and referrals to data and logic, and general lack of understanding to this approach of fighting cancer. In light of the many I know who are in much more dire circumstances of cancer than I, I have much for which to be thankful and should be ashamed for my lack of gratitude.

I appreciate all of you for your friendship, support and prayers.

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.