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.