Sunday, February 28, 2010

So What Was That All About?

Well, nothing happened. Oh, we got there -- despite the 10 inches of new snow. Unploughed snow that had starting to blow around really good by 6:30 AM when we pulled out of the driveway -- But they didn't do any biopsy. Oh; the hospital was ready for me. They got me arm-banded, dis-robed, out of my shoes and onto a tidy nice bed in Day Stay Hospital. It was actually pretty nice & welcoming and comfy. And all the regular hospital people had come to work through the same snow we had & they were pretty cheerful and even friendly.

They had me order the breakfast that was waiting for me when I got back to the room - Cheerios with strawberry yogurt and apple juice. Coffee with 3 cream for Femi.

It wasn't even very long before they hoisted me onto a rolling bed and gave me an elevator ride downstairs so I could meet the nice radiology technician, Danny who was hoping nobody else would show up because the weather outside was so bad and he wouldn't mind a light day. Then I met the Radiologist (big 'R' -- maybe MD, I guess) and she started guessing at my medical history and why it was that a biopsy of the type prescribed might be appropriate. She guessed first that my sacrum had detiorated further and we were looking for the extent of the invasion into my bone.

I let her guess again, since she was on a roll. She asked the second question so fast, I would have had to be pretty quick to slip a word in edgewise anyway. And she proposed that we were going to do the biopsy to establish a baseline for biophosphate treatment (chemicals that are linked with regeneration of bone mass).

But she must have drawn a breath - or I just decided to be snotty - and I asked her if I should just let her keep asking me questions until she hit on it by chance. "But it could take a while." I continued, " because the answer to your first questions are, No and No. Would it help if I put you in the picture a bit about my medical history and what my understanding is about why I am here with you today?"

I can't imagine how that endeared me to her, but she did ask me to go ahead. And I did -- I gave her the highlights:
In 2005, I was first diagnosed with Multiple Myeloma with only a protein assay -- no sign of mailignant cells in the regular bone biopsy -- no other bloodwork abnormalities (except a low red blood cell count).
Only after a guided biopsy of my sacrum did we find absolute evidence of multiple myeloma.
I have been 4 years without any symptoms after a double autologous blood stem cell transplant.
New symptoms indicate a re-occurrance of the problem.
Pain relievers do not adequately relieve the pain.
Steriods (dexamethasone) were started 2 days prior and may be giving some relief.

And I concluded, "I would like, please, a biopsy of the enlarged area of my sacrum to determine if it contains malignant cells."

She said fine, we would start.

They did the first scan. She read it and then came to tell me; "Well, that bone is too tough for me to penetrate with the biopsy needles we use here. To reach that area would require a different type of biopsy needle to auger into the area. We don't ever use that type here. If I were to attempt to get a sample from you, I do not think that I would succeed and you would only get a negative result. And that would not be helpful to you."

So we trundled me back to my lovely almost-tidy bed, ate breakfast and drove home through the partially plowed, still really snowy, really slippery roads.

Got any hints??
What was I doing there? We are going back to my former oncologist. He said that if we get him the CT film he'll review it with his (big 'R') Radiologist and work out a way to get the biopsy done.

I guess I should be glad they didn't do anything.

I spent the rest of the weekend with my feet up. Steady intake of apple juice, Percoset, dexamethasone and plenty of warm home-cooked meals. And time with Oscar and Femi to just relax and rest. We even celebrated a birthday party, congratulated Mahlona and Noel on their pregnancy announcement, Tim & Taylor (soon to be big brother and sister) had a great time with Oscar and his newest birthday presents.

And I feel much better! Neat, huh?!?

Monday, February 22, 2010

Lucky Me!

Well, not  exactly ...

I've got another backache that won't go away.

Dr Salwitz sent me for a new MRI. And it looks like some nerves are getting pinched ... again. It took about 30 seconds for him to get around to suggesting we consider radiation to reduce the swelling. And believe me, that sounds great since it will probably free up those nerves in a snap. Even so, the pain isn't so bad that I want to go running in too fast. Maybe we could figure out just what is going on / how much of it is going on / where is it going on / stuff like that ... y'know.

All right. So. This Friday the 'Interventional Radiologist' (fancy new term I just learned - here's the wiki entry) will do a 'Guided Needle Biopsy of the Sacrum' right into the center of the spot pushing on those nerves back there. The results of that plus a total analysis of the two or three buckets of blood they are taking from me on Thursday will = a bunch of new information.

If you drop by early next week I'll try to have an update posted.

Ok. That's all I have to say about that

Wednesday, February 03, 2010

Blessings & Ideas


Here's what I wrote yesterday as my Profile ::
"I'm out here trying to give a bit more than I'm getting which is tough since I seem to be getting so much good out of life - steady health + loving family + strong friends + plenty of opportunities to exercise my heart & mind & body.

Why don't you give me a shout if you think I could be useful to you? I'd be glad to hear from you.

- Mark
The words just came out of somewhere and I put them down just like that. Neat, huh?

A volunteer from Myeloma..Org called me last Friday. I initiated the call when I made a request through their website for contact from someone who had personal experience with Multiple Myeloma. I am very glad I did that. What a wonderful experience that was!

I don't remember ever feeling that another person was really in tune with the thoughts and feelings I had experienced while going though my diagnosis and treatment as much as I felt during our phone call. Besides being able to recall situations and feelings from those times, I was able to see a new perspective on the time since then. I got a glimpse of how I am different since then too.

Before I start wrestling my ideas into some sort of well polished picture, I think it might be good enough if I just write out what came to mind during that conversation. So here it is:

It seems that one big change is in my attitude toward my finances and the way that I use money. Since the reader doesn't know me personally, I can share with you what one person said back in '04 about his view of my attitude toward money. He said, "Mark, of all the people I know there isn't anyone who is so careful with his money as you are." He added, "You are really tight with a buck, man!" And Jack knows me pretty well; both personally and professionally.

Once I got my diagnosis, the first thing I did after beginning dexamethasone & talidomide treatment was to plan a trip. I wanted to go and see the people I love and to have fun doing the things I like to do. There were just two things holding me back. I would have to be away from my son who was just 3 years old at the time and it would likely cost a few thousand dollars. I reasoned that my son would soon be seeing me night and day because I was expecting to be home through certain phases of my treatment.

But the money... it had taken a lot of scrimping and doing without to keep it together! But I thought there was a chance that as soon as a few months later, I  would be in no condition to manage the trip; at least not without someone to help me along. And a lot of the activities I wanted to enjoy needed me to be pretty fit.

And that was the first time I decided to spend money a bit more freely than I had in years -- just to make the best of the time I had -- doing the things I enjoy -- without worrying that the money I was spending would be needed later for something more important. I had the important thing to do right then.

The past couple years have apparently been chock-a-block with lots more of those 'more important things'. Or maybe it is that my attitude toward saving for a future has become less important. For sure my savings are a lot smaller than they were four years ago. My idea about what money is for has changed.

I also have more confidence that I can contribute and get compensated now. So I don't need to worry about saving against the time when there is no way for me to give more than I get to receive enough of what I need.

I guess that about covers it ... and that's all I have to say about that ...