Monday, May 16, 2011

So Boys & Girls......

Today was a Dr. Miller appointment. It was originally scheduled for Thursday the 19th, but I changed it to today. I needed to go alone. Rather than argue with Grace & Jen, I just changed it. I told them via text when I arrived and Jen was fine. I haven't heard from Grace yet.

I told the Favorite Naval Consort last week that I wanted to go alone. He was vehemently opposed. I explained that I had questions that couldn't be asked in front of my sisters. Not because they were embarrassing or anything, but because they were hurtful. When I have tried to talk about what is troubling me, they talk over me. I don't really get upset, because it's what I do to them. In our world, if you don't hear it, it isn't so.

The FNC begged me to reconsider. I said we would discuss it Sunday night. Last night he asked if I had reconsidered and I said no. I said "As a matter of fact, you can't even rat me out, I moved the appointment to tomorrow. So there is no time." He called me a jerk....several times. He asked how I would get there and I said the Bunker Hill bus went to Woolworths...and then we both laughed. Woolworths has been gone for ages. Although, until today I couldn't have told you what replaced it. But this morning I made a point of's a TJ Maxx.

So off the #93 and down to Chinatown and Dr Miller's office. Standard bloodwork....standard wait in the waiting room trying to read my book and block "Are You Smarter Than a 5th Grader?" Today's contestant clearly wasn't. At first I thought he was a priest, but then he flubbed "sesquicentennial". I put my glasses on and paid attention, he was some kind of minister, but not a Catholic priest. I guess they don't study Latin.

Then I was escorted to an exam room and I concentrated on my Stephen King book. There was a time that I was first in line for his books, but that was years ago. For the last several years I have been reading non-fiction. Now these "snacky" little books and short stories are just about all I can handle. The upside of this was that I was able to purchase 4 books from an Amazon reseller for a penny a piece plus shipping.

Kate, my nurse practitioner came in and her first question was "Where is your entourage? Your posse?" I explained that there were things I needed to talk about and I couldn't have them talking over me. But first I had to ask her about Israel, she and her sister vacationed there just after Passover.

Pleasantries out of the way - her trip, my DC adventure, my hair, which she thinks is awesome as is, short and white.......I got to my point.

When I was diagnosed in June of '08. I was not in any pain. There was no outward sign of my cancer. Halfway through my first round of chemo (Oct '08 to January '09) there was peripheral neuropathy from the chemo. Just about eight months after stopping chemo I was back to normal. No pain. Then in March of '10 pain began. It was different from the chemo induced PN. It was in my ankles, shoulders and sometimes my hips. It was accompanied by fatigue and some cognitive deficits. It became bad enough that I went back to Dr. Miller after a 15 month absence. Finally in August of '10 I was back in chemo and on oxycodone. Shortly into my six cycles of chemo the drug induced peripheral neuropathy returned and I was in even more pain. For most of my time on chemo it was generally assumed that my joint pain would fade. But it didn't. Now, 95 days after my bone marrow transplant, enough of the chemo induced and post BMT pain has subsided to the point where there is no denying the original joint pain from last spring is still here. And as bad as ever.

When I have tried to discuss this in front of Grace and Jen, they talk over me "You're too impatient! You're rushing it. Just wait.". I completely understand. I would do the same thing. To a certain extent I do it to myself.

Sometimes I have to actually remind myself that I am not a hypochondriac. That I am not "goldbricking". Have you ever told a white lie and then gotten caught up in it? That's how I feel. Like I didn't want to go to dinner with someone, so I said I was sick and next thing you know they are on my doorstep with chicken soup and magazines.

I was explaining all of this to Kate. That I needed to know, but I don't want to know anymore than my sisters do.

Is the joint pain permanent damage from the multiple myeloma?

Yes. In all likelihood, it is permanent. My life will never again be what it was.

Of course the kicker is.....I did it to myself. When presented with the choice of going back into chemo shortly after the first round failed in January of 2009 or waiting for it to become symptomatic..........I chose to wait. And after it became symptomatic in March of 2010......I waited even longer.

That was when Kate channelled my sisters. She talked over me and said she would not let me dwell on that. There is no point in looking back at how things could have gone differently.

Kate left to get Dr. Miller. When he came in we talked about the post transplant fatigue which is very slowly improving. He said it was harder for very productive people (like his fellow physicians and executives) to take. So that was a compliment anyway.

We talked about my white blood cells, which - comically - have still not reached 4,000. I was 3,500 today. But I am told not to worry, it is progress even if it is agonizingly slow.

On my way out I ran into one of my chemo nurses and Denise my transplant co-ordinator. They were astonished at how good I look, and I do.... even if all the marks in my neck make me look like an extra on the set of "True Blood". I told them the secret was to be fat when you started chemo, then when you drop all the weight instead of being sunken in, you look like you are back from a spa. Kate gave me some new prescriptions - one is for Ritalin to fight the that's funny!

After that I took myself to lunch at P.F. Changs. Emerson College had it's graduation ceremonies today, but that meant table were full and I had the bar pretty much to myself. I ate wontons and read my book. After lunch I got a venti vanilla chai tea latte and walked back to the Bunker bus in front of TJ Maxx.....not Woolworths.

I told my mother it went well and repeated that on the second floor to my father. Then he came downstairs and said "If it was so good, why do you look sad?"

Damn tight-knit family!


elle said...

I remember reading your posts when you talked about having no symptoms except when you were treated. So I can't say any thinking person would have made different choices. Sure, the med professionals advised otherwise... But you gotta go with your guts sometimes. And who's to say you'd be feeling any different now anyway? (maybe we've both watched Mystery Diagnosis one too many times).

So did the fifth grader know sesquicentennial?

Kanani said...

Oh, I don't think there's any point in beating yourself up over what you could have done. It doesn't matter. Be present, as you have been doing, and keep going forward.

As for the pain, yes, you do need to take it seriously, as the chronic type can do a serious number on one's outlook.

I think you ought to go in and talk to Sue. See how she or someone on staff can help you. Just the breathing exercises, and also perhaps starting out with a chair yoga class that emphasis breathing.

Boy, you were right not to take along Grace & Jen. Sometimes you just need to do some things alone, and the family needs to be strong enough to let you do them.

Yer Marine said...

Keep making corpsuckles. Dammit. That is the first thing you need to ask yourself. "Have I made enough corpsucles today?"

If the answer is "no", then sit down and make more.

By the way, some of the fifth graders I went to school with were fifteen or sixteen. Before the days of social promotion. Except they weren't smarter than a fifth grader. They still aren't.

Middleboro Jones said...

Maggie -

From Bagram Air base in AFGHN, I am glad to hear thigs are "trending" in the right direction...time sux and I feel your pain as I will likley be working over here for the next 3-5 years....economy sux....what can i say?

All my best....hang in there.

BostonMaggie said...

Elle - Sadly no one except the host and I knew it was 150 years.

Kanani - I am going to get down their soon.

My Marine - do you think every situation can be resolved by you giving ordders?

MJ - You stay safe and be sure to let us know if you need anything while you are there.

Stella said...

I'm sorry I'm late in commenting. To accuse yourself of "goldbricking" is ludicrous. The entire USN could stop you. Yes, I would bet on you.

Dr. Miller is right: highly productive people don't deal well with slow processes. And, yes, it IS a compliment.

So, your life may never be the same as it was. It just means things will be different, maybe better.

Since I'm too far away to bring you chicken soup, here's a list of resources I found from my pathalogical need to research. I hope these help.

Myeloma Hope has some interesting quasi-homeopathic suggestions on PN.

IMF is listing some clinical trials on PN:

Livestrong has a good site:

(Now, do I get my picture of that cute, short cut?)