J. Michael Jones

Cliff’s Notes Version: I got my first labs back yesterday, it was to measure the bad protein, which is produced by the cancer. Unfortunately, it is the same level as prior to the stem cell transplant.

Longer Version:

I debated in my mind if I wanted to try and give an update now or when all the tests are in. I decided to report what I know now, because Multiple Myeloma (MM) is such a complicated disease and when you share several data points at once, it can get very confusing.

As a reminder, MM is a cancer of the plasma producing part of the bone marrow. There are several different types of proteins that make of the plasma and MM can involve any of those or sometimes more than one. These plasma proteins are the building blocks of our antibodies, for fighting infection. This cancer causes problems, including death, with it either spreads locally like other cancers, (being inside the bone this usually causes fractures) or, like in my case, where the protein is produced so rapidly that it gums up other organs, such as the kidneys. My cancer involves the plasma cells that produce a specific protein, Lambda Light Chains. Those are notorious for killing the kidneys as the first symptom.

My cancer staging (and seeing how well the stem cell transplant worked) work up includes measuring the amount of these cancer-generated proteins, looking directly at the bone marrow to find cancer cells, and doing a full body MRI to look for places the cancer could be expanding locally.

The thing that we had hoped for, with a stem cell transplant, is that there is NO signs of cancer whatsoever. That is called a “stringent complete remission” and is as close to a cure as we have. Some of these people live more than 30 years without a relapse. This was our hope and prayers. Unfortunately, I have not made the cut for that hope. My plasma protein came in yesterday, and I saw it by mistake. I was looking for a different lab value on my portal and this one popped up. The blood level of this nasty protein, the one that killed my kidneys, was about 10 times normal, and about the level it was before the transplant. Denise and I took this information very hard… devastating would be an understatement. It means the cancer is still there and active. We will not know how much until the other tests is come in. My hope is still, that the other measurements are zero. If so, then it would probably mean that we continue our current plan of restarting chemo in two weeks, at a lower dose.

If the other tests come back with a significant amount of cancer (actually one cancer cell is significant) then I don’t know what we will do. But the options are to do aggressive chemo or even consider doing yet another stem cell transplant. The process was brutal and the thoughts of starting all over is very discouraging.

It is hard for me to sleep anyway, with neurological twitching all over, bad headache when I lay down, bronchitis with a cough for 2 months, and a pounding in my chest and ears from the tachycardia, which is related to my anemia. Last night I had additional sleep hindrances of a big, painful infection on my nose (probably from my very low white blood cells) … and the fear of more suffering, per this lab result that came in yesterday. I must have hoped and prayed 10,000 times, especially at key junctures of this ordeal. So many times, the outcome has been very disappointing. Denise and I have bad news fatigue. I even sense in my doctors that they even dread seeing me because I’m such a mess. I do everything they say to do, but still, the labs keep coming back screwed up. It was certainly disappointing yesterday. We are praying for some positive news after a long stretch of bad news and I really thought these numbers would be that good news.

As I laid awake in bed last night, I began to pray that God—since He has not intervened in this process so far—would end my life now. I wanted to die in my sleep, rather than face more and more disappointments and suffering. It isn’t like I don’t love life. I adore it. I love my kids, my grand kids and certainly Denise. I have so much unfinished business on this planet. I really don’t understand those people who say they are looking forward to death (unless they are very old and frail). But sometimes it feels so hopeless and all your struggles to succeed appear to be in vain and the suffering unrelenting.

We do feel a little better, emotionally, today. But I still pray for one bit of good news, or that God would just take me home.  Mike