One man's experience with multiple myeloma

Tag: CyBorD

November 4, 2012

Kathleen and I went to our usual service at the Chapel of St. Andrew. This, being the first Sunday of the months was the regular healing service. It is always such a comfort to know that healing is going on in me constantly even if I don’t directly perceive it.

Last night I felt good enough to again try it without the OC. There is something about the late evening that seems to bring out the worst in Peripheral Neuropathy. And again, I ended up having to take the OC 1-1/2 hours after going to bed. I’ll get there eventually.

Thank you, Lord Jesus, for my healing.


November 2, 2012

This evening I saw Margot and Neil. As usual, Margot worked on my calfs and feet. Neil did some extra work on my feet too, after the usual adjustments. The benefit of his work is most noticed the next day. I sure hope so, because right now, 2-hours later, I’ve been having a particularly strong series of the short sharp pains – some of which haven’t been so short.

Kathleen made a wonderful dinner of ravioli and salad. I really cannot say enough about my wonderful and beautiful wife. She has been my unwavering support through this whole process. I really don’t know where I’d be right now without her unceasing love and devotion. I love you Kathleen! May God bless you and keep you this day and for evermore. Amen.

Thank you, Lord Jesus, for your healing.


October 31, 2012

Happy Halloween! As I write this, the Trick or Treaters occasionally interrupting. Cute kids!

Today, I had my blood drawn at Lynn Cancer Institute by one of my favorite phlebotomists, Carolyn. I’ll get my results next Wednesday when I meet with Warren. I’m looking forward to no worse than last time. With that news, I’ll push for staying on the curcumin therapy until such time as it may not work anymore. The blogger at Margaret’s has been on this therapy for several years. If the numbers are not so good, then I’ll have to plan on the Stem Cell Transplant.

The peripheral neuropathy (PN) is still very much with me; I still think that it gets slightly better each week. I’m getting on the recumbent bike 2-3 times a week and take B-12, B-6, Folic Acid, and Biotin each day. All of these are reported to help with neuropathies. The B-6 and Folic Acid are part of my regular multivitamin. The Biotin is a separate supplement at 5,000 mcg (5 mg) per capsule, as is the B-12 at 2,500 mcg (2.5 mg) per sublingual tablet. I can’t tell you whether any one of these is necessarily helping or if the PN would be going away by itself. But, I can tell you I’ll continue to do all these things because the PN is getting better, albeit slowly. Thank you all for your thoughts and prayers. These are helping too!

Thank you, Lord Jesus, for your healing.


October 29, 2012

I received a comment on my October 26 posting suggesting that myeloma was sent to the commenter and me by Jesus. My complete response follows his. Let’s just say here that I did not agree.

Yesterday, Kathleen and went to church at the Chapel of St. Andrew. Our new interim priest, George Andrews, was there and there was a celebratory luncheon in his honor after the service.

The peripheral neuropathy seems to have settled in as mostly foot pain (ache). I still need the OC to get to sleep as the pain is sufficient to keep me awake and the acetaminophen by itself just is not enough. I’m OK walking, but standing still rather quickly becomes uncomfortable. I still think that each week is at least slightly better than the last.

I got on the recumbent bike today for another 20 minutes. I am continuing the curcumin therapy at 6 g/day before breakfast. I’ve read another chapter in the Moffitt stem cell book. My next blood draw is on Wednesday morning.

Thank you, Lord Jesus, for my healing.


October 26, 2012

In the continuing saga of peripheral neuropathy (PN), the short sharp pains were almost absent yesterday (Thank God) and replaced by stronger aches in my feet and lower legs.

Tried ringing bells in a bell choir last night, D, Eb, and E, at the Chapel of St. Andrew. This also includes chimes of the same notes. It’s actually more difficult than it looks, but I’m getting the hang of it. I haven’t figured out whether all that standing helped or hurt the ache in my feet. I’ll stick with it either way.

Slept quite well last night, even through the blowing gusts of Hurricane Sandy that is giving us a glancing blow at the tropical storm level.

On Wednesday, I have my next blood draw to see how I’m doing. If my numbers remain good, I’ll continue with my curcumin therapy (still at 6 g/day). If they don’t seem as good, Warren and I will discuss my therapy options, that will, in this instance, most likely lead to a stem cell transplant early next year.

Thank you, Lord Jesus, for my healing.


October 23, 2012

This peripheral neuropathy (PN) is really trying to drive me nuts. Yesterday, during the day, I was actually feeling pretty good. My general level of discomfort was really quite low. Throughout the evening which included the debate, I still felt quite good. So I thought I’d again try going to sleep without the OC, just taking the acetaminophen. Well, about 1/2 hour after going to bed, the PN pain seemed to slowly grow. It culminated with about an hour or more of the rather steady short, sharp pains in my feet that I have written about before. I have had worse attacks of these, but not many. So, finally I gave up and took the OC about 1:15 this morning. After a little while, I slept well for what was left of the night.

Today was a more recently typical day, although not as good as yesterday. I think I’ll take the OC tonight. I did get on the recumbent bike for 20 minutes. This does seem to help with the PN too.

I did reduce my curcumin therapy dose to 6 g this morning and tolerated this dose pretty well so I’ll continue at this level for a few days.

No reading of the Moffitt book yesterday. I try not to read it before going to bed.

Thank you, Lord Jesus, for your healing.


October 22, 2012

Peripheral neuropathy (PN) and curcumin therapy are today’s topics.

My PN still seems to be gradually improving, and I am most grateful for this. Thank you all for your thoughts and prayers.

This curcumin therapy is a little strange for me. I used the protocol on Margaret’s Corner, actually even a little more slowly: 1 week at 1 g, 1 week at 2 g, 1 week at 3 g, 1 week at 4 g, and now I’m at 8 g per day. I follow the instructions and take 2 fish oil capsules first, then the curcumin. I have also been taking the Dr’s Best, which comes in 0.5 g capsules and 1 g tablets. So this means a dose is 16 capsules or 8 tablets or some mix of both that adds up to 8 g. The instructions also ask us to take these on an empty stomach with water. Which I can do, but I have to say that the tablets are quite hard for me to swallow, sometimes. The trick is, after all these capsules/tablets, I’ve got no room for breakfast. I do finally feel hungry about 2 hours later and can eat something then. I often seem to get either loose or watery stools in the morning that go away in the afternoon. Today, I just never seemed to feel quite right in my gut. So tomorrow I plan to reduce my dose to 6 g and see if I can tolerate it any better.

Thank you, Lord Jesus, for your healing.


October 21, 2012

Yesterday was my Dad’s birthday. He died 26 years ago from lymphoma. I still miss you, Dad.

Kathleen and I did get to the beach yesterday. Later that evening, we went to a Brazilian restaurant with Mike and Robin. It was great to see them again.

Got a pretty good night’s sleep last night. Only got up once over the 9 hours. Tied my record of 5-hours.

Today, Kathleen and I went to the Chapel of St. Andrew for our usual service. Plan to take it easy for the rest of the day.

Continuing the curcumin therapy at 8 g/day as recommended in Margaret’s Corner. Continuing the book from Moffitt.

October 16, 2012

Yesterday was pretty good as far as my peripheral neuropathy is concerned. Today, not as good. It was good enough yesterday for Kathleen and I to take a walk before dinner. Today, I needed a dose of acetaminophen in the early afternoon to help get by.

Still taking the curcumin therapy and still reading the book from Moffitt on stem cell transplanting.

Thank you, Lord Jesus, for my healing.


October 14, 2012

Kathleen and I went to our usual service at the Chapel of St. Andrew this morning. Then it was off to Costco for some needed items.

I did feel quite good yesterday regarding my peripheral neuropathy pain following the work done by Neil on Friday. So, I thought I’d try just the regular acetaminophen without the OC last night. Didn’t work. I had to take the OC 2-1/2 hours later, which finally kicked in about 1-1/2 hours after that (it usually takes this long to take full effect). That’s why I wait for weekends to try these things. 😉

Thank you, Lord Jesus, for my healing.