Jen and I returnued from New Hampshire today and my parents weren't home. I unpacked, started laundry and put a note on the fridge before leaving.
I went to run some errands....unsuccessfully. It was actually and #EpicFail. I accomplished nothing.
Well nothing except enjoying an ice cream soda while I admired the restoration work on USS Constitution.I returned home and found the note in the same place and still no parents. So I called their cell and found out I alone tonight.
Well, that means two things..........dinner has onions and garlic......and no reading my Stephen King book!
There is an undeniable freedom in getting into the driver's seat of a car with the keys in your hand. Most stuff I need to do, I can walk or I call my sisters. But sometimes I think they will think it's a pain or ridiculous. You know....a "la, la, la".
My Marine is marching a parade tomorrow. Jen and I are supposed to go to Grace's cottage. This parade is 60 some odd miles further north and west.
In my previous life, I would have just gone. Now I have to consider how much I want to impose.
We are all watching the Bruins game from our various locations. Frankie sent me a text that thunderstorms had knocked out his cable. I began texting play-by-play. When his cable came back he sent me a message "You R the best mother evah!"
I told him this was nothing.....I used to do whole Red Sox games when the Favorite Naval Consort was out on night maneuvers off Newport.
Even knowing this damage is permanent. Even knowing that going right back into chemo back in '09 would have prevented this pain. Even knowing now that chemo was going to work (which I didn't believe back then).
I still would have made the same decision to wait.
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 looking.....it'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 fatigue.....now 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?"
Yesterday I went to lunch at the Beacon Grille. My Dad wanted to take his sister Teresa out to celebrate her upcoming birthday. My cousin Kathie & tagged along. Kathie actually picked it, following my father's dictum, the restaurant must have cloth tablecloths and napkins. I had the most delicious sandwich called an Innkeeper's Melt and sweet potato fries. The upside of not being able to finish my lunch, is that I know what dinner is going to be! I told my cousin Kathie that when I win the lottery, I will pay someone to bring me that sandwich every day. Today I walked down to Thompson Square. It's happening more frequently and it is becoming easier. Even if it is at a maddeningly slow pace...it is progress. I picked up a class schedule from the Charlestown Yogastudio (which is run by the marvelous Sue Lynch of "There & Back Again"). I've been trying to work out with a DVD, but I am so slow and rusty.......I think a class or two might be good for me.
When I was in DC with my sisters, Jen & I snuck off to Modern Nailsfor a mani/pedi. Grace preferred to nap in the hotel. It was one of the best manicures I have ever had. It finally chipped today, two weeks later, which is phenomenal for real nails.
I got to see Frankie's Brittany today.....we get along SO well. We both love Frankie. More importantly, she likes the red starburst and I like the orange, so we split a bag!
I might even head down to Rocky Nook this weekend and take my Thomas and my Frankie to breakfast.
**05/10/11 UPDATE - Frankie has moved up from #27 to #22! **05/09/11 UPDATE - Frankie has moved up from #41 to #27! ~ Go Frankie! Go Bruins!*** My brother Frankie (as opposed to my son, my Dad, my uncle....well you know) is participating in the Boston Bruins Beard-A-Thon. It's a fundraiser for "One Mission", a childhood cancer foundation dedicated to enhancing the lives of pediatric cancer patients and their families, by way of the Boston Bruins Foundation.
This is a crappy picture, but my niece Kelly promises a better one soon.
My brother Frankie has a 5 o'clock shadow by noon most days. And he's always looking for an excuses not to shave, lol. Funny thing is, I think we have secretly discovered his best look!
So please consider going to his profile on the Bruins websiteand sponsoring him. One Mission is a great cause. If you can't make a pledge, at least vote for him and pass the link around.
"President Bush tried, President Clinton tried, but Barack Obama was the one who had the courage and the guts and the coolness," Walters said of the mission before being drowned out in applause from the audience
I am 52, divorced, mother of two, Republican. I was born and raised in Boston and can not conceive of living anywhere else. I think Brian Lamb of CSpan is the sexiest man on TV. If you want my attention, you have to be aggressive and smart and you have to feed my head.
If you want an explanation for the pic, go to this post.