After rambling last night, I will get back to my point of this blog, which I said would not become a blog, and that is to give a one concise point of updating  my status for my friends and extended family.

I am learning as a  new cancer patient, that you have to pace yourself. It is a long, long haul of many ups and downs and today was no exception. I will spare all the details and give the highlights.

I’m still putting out a lot of urine, which of course is a good thing. However, today my lab measurement of creatinine (one of the measurement of true renal function) went up slightly. That was a bummer.


Image may contain: 8 people, including Denise Jones, Tyler Samuel Jones and Ramsey Jones, people smiling, people sitting and indoor

I did have dialysis tonight.

I had many of my kids with me tonight (I will post it above if I can find it). That was fantastic, lifting some sinking feelings.

Denise’s exhaustion is worsening and I’m worried about her. She needs a good night’s sleep. She’s getting just a few of hours each night. She, of course, is sleeping at home in her own bed, but the stress keeps slumber from her eyes. OF course I’m worried about the stress on all the kids.

We met with my oncologist tonight as well as my new nephrologist. A plan is shaping up.

The real bone marrow biopsy is still not back (MLK Holiday has slowed it down more). So far, we know the general nature of my Multiple Mylenoma and the amount. The good news is that the amount is very low, which may (but it is not the only factor) determine how easy it is to treat. So I have just 10% of cancer protein in my blood that you would expect, especially to shut down the kidneys. That’s a very good thing. The one piece that is still pending is the specific sub type. So, I could have a very low amount of a easy-to-manage type or I could have a low amount of really difficult-to-manage type, if that makes sense? We will know more tomorrow.


Tomorrow:  plasmapheresis to remove bad, kidney-damaging protein and start three types of chemotherapy to suppress the bad bone marrow.

Wednesday: dialysis and continue chemo.

Thursday: ? Discharge to outpatient dialysis.

I will be doing 4-21 day courses of chemotherapy, then schedule for a stem-cell transplant in April-May. The transplant would happen in Seattle and that process would take about 4-6 weeks of in&out patient work.

That’s the plan.






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7 responses to “Upate”

  1. In spite of the ups and downs it must be some relief to have a plan. I hope the chemo goes well and is not too uncomfortable. I am glad to see you surrounded by your family. I am praying especially for Denise, who is going through her own grief emotions too. When I experienced side effects from my CKD treatment I reminded myself: it is temporary (it was), this is NOT my new normal (I later settled back to my old New Normal), and any uncomfortable thoughts and feelings are part of the side effects and not to be seen as “real” (the weird and anxious thoughts were, in fact, a side effect). Oh, and it SUCKS while it is going on. Just sayin’…


  2. Tell them I am old but as mom always said I am healthy, if that helps with stem cell. All sounds promising and I am thankful for “hope” another important word.

    Liked by 1 person

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