Friday, December 31, 2010
My cousin Liz got married tonight. Even more of a reason to celebrate.
Nearly my whole extended family on my mother's side was there. My mother has four children and we were there in perfect attendence. My mother has four brothers and between them I have 13 first cousins and 3 step-cousins....and from there, in-laws and second cousins.
But there is one who is never there. Not every marriage that ends follows the model John Miller and I set of being friends after the divorce.
We rarely spoke of the missing one. To do so would hurt our uncle, my mother told us. But when we did, Mama Kelley told us not to worry.....when she was older, she would come looking for us. We waited for her to turn 18 or 20. When she didn't come, Mama told us that she would come when she had a child because that makes people reflective on their own roots. When Mama Kelley passed away - it will be 11 years on January 28th - I remember thinking how badly I felt for my missing cousin. She would never know Mama Kelley. I can't even express to you what a loss that is. Mama Kelley was the bomb. She was a riot. She was charming and witty and always knew what to do. And what to say. One of my favorite stories was of Mama Kelley talking to her cousin who was in the dumps becauses his leg had just been amputated. Mama said "Well you have another one." then they both laughed so hard and he told her "Grace, I am so happy I came to see you!" She was just what he needed. To this day, that story can make all of us crack up because that was who she was. Just the right thing and everyone wanted to be near her.
My mother's side gets together for all the standards....weddings, showers, christenings, wakes and funerals. But we also meet every December for Christmas and every summer for 4th of July. My mother and her brothers get together for dinner once a month. Most Fridays, my mother and father have lunch with her older brother, Frank and his wife. My Uncle Walter lives right behind our parents house.
So many happy gatherings. Not everyone makes every party, but we all try. We all get along and are happy to see each other.
But not one of these things happen that I don't think of the one who is missing.
Finally, her sister made a point of finding her. We were so happy and excited. When would we all get to see her? We were told not to ask. It would happen as she and her father wanted. Just wait.
So we waited.
And tonight, for her sister's wedding........she was there.
With this crowd a good time is ensured.
I am showered....and now I'm napping. LOL! My father has arranged hotel rooms for all of us across from the wedding venue. I will likely nap there, too.
I hope your night goes as well as mine.
Thank you for all the nice comments in the post below. Good news is never so much fun as when you share it with others. You have all proven that point and tonight will be another round of that as I tell my cousins and aunts and uncles.
Wednesday, December 29, 2010
At one point I was really sweating this second bone marrow biopsy because of it's impact on having the stem cell transplant. Not everyone is qualified for STC. Every doctor has a "threshold" that you must meet. I had heard of one doctor whose threshold was 5%. I was beside myself! What were the odds of dropping from 70% to 5% or less? If I had endured these six cycles of Revlimid/Velcade/Dex only to be told that I was not qualified for STC, I would have lost my mind!!!
When I voiced these fears to Denise, the transplant coordinator, she told me that Dr. Miller's threshold was 20%. Also, failing to meet it didn't rule you out, it just delayed it until you did two or more additional chemo cycles.
Well, 20% or less seemed much more doable. And failure just meant more chemo - which would blow, but I could do it. As much as I whine and moan, I actually do know they are saving my life.
Today, Kate gave me my results (a week earlier than the 2008 results were revealed)....
Less than 1%.
It is the best possible position from which to have a stem cell transplant.
They are very excited.
Tuesday, December 28, 2010
So I have a million things I am supposed to read, but I am indulging in this great guilty pleasure "Furious Love: Elizabeth Taylor, Richard Burton, and the Marriage of the Century". This is the book Kanani sent me. I am a fan of Elizabeth Taylor, but I must confess.....I never paid much attention to him. Mama Kelley was an Taylor fan too, so I think that's where I got it.
Taylor and Burton met on the set of "Cleopatra" in 1963. So I watched it yesterday. It's four hours long. Basically the first two hours she is with Caesar (Rex Harrison) and the second two hours Mark Antony (Burton).
So the first two hours, I like. Of course. The film is lavish and she is beautiful. Taylor/Cleopatra wants....pursues....and gets Caesar. It all makes perfect sense to me.
Then I stop the movie and have lunch with my mother. After lunch, I read a little, do some stuff (very little stuff, trust me). Then I go back to the movie. Caesar is assassinated, it's no surprise. I know the basic history.
Now it's time for the big romance. Both historically and on the set.
What. A. Disappointment!
Mark Antony is whining, self pitying, and when the big battle happens.....he is drunk, pigheaded and less than devoted to his men.
When he leaves the Battle of Actium, which I must confess, I was not familiar with, I was horrified. I don't know how accurate the movie is, but history confirms he fled the battlefield. From what I have read, he deserted his forces.
The movie wants us to see this as some sort of devotion to Cleopatra and true love.
Good Heavens.....I was ill! Who wants a man who would desert his post? Abandon his principles? A man who let his troops down?
This is the same bewilderment I feel about the Abdication of Edward VIII. At least in the new movie ("The King's Speech" two thumbs up....GO), Edward is protrayed like the ass I consider him to have been.
Anyway, I nearly shut the movie off at that point. How did anyone talk Burton into accepting this role?
Monday, December 27, 2010
This morning my father was out shovelling and came in....not a word about anything being unusual.
At one point this afternoon one of the neighbors came and shovelled. My mother commented on it. She said it happens so often she doesn't even know which neighbor it is.
I think "I got away with it!"
Then this evening we are watching Jeopardy....I was creamed...but in my defense...a category on "Elvis"? A category on "Nebraska"? Really? That's not my fault. (Are you there baby?)
Anyway, I say something about Frankie always shoveling me and I haven't shoveled in forever.
"But your father said you shoveled last night." Blink, blink. I was frozen and only my eyelids worked. I burst out laughing.
"How did he know? I thought I got away with it? I waited for him to be asleep?"
She had that oh-you-silly-girl smile/look on her face "Even when your father is asleep he is awake. He even told me what time you did it and when you went to bed."
I listed all my stealth moves. I told her that my PJs got wet at the bottom and were sliding off. She laughed and just shook her head.
Later I went up to load the dryer, he was watching the Bs. "Do you know I was trying sooooo hard to be as quiet as a mouse last night?"
"Yeah. I know."
Sunday, December 26, 2010
But the guilt was eating away at me. When I lived in the Nook I would have let it build into a mountain. What did I care? Eventually Frankie or one of his posse would have come along and taken care of it. Or at best, I would have shoveled the smallest possible path so I could get to work knowing it would be taken care of by the time I got home.
But I am not in the Nook. And my Dad, while completely amazing, is 76.
I did a pretty good job of it. The worst part is the it looked like a dusting from inside the house. I thought I would be out and back in quickly.....so I didn't put on a hat. LOL! My hair is soaked! And considering how much has fallen out...that is still a lot of hair.
What actually drove me back inside was the fact that my pajama pants started to soak up snow and slide off. It's hard to shovel and yank your pants up at the same time.
Not to mention being as quiet as a mouse (if a mouse shovelled snow). I kept thinking that at any minute the back door would open and I would hear an exasperated "What is wrong with you! Get back in this house this instant!"
But I got away with it! I did the back and front walk and the sidewalk. I had a few giggles when I realized that I had shoveled a path all the way to Feeney's house. When we were little, Grace and I would do our house and next door because Mrs. Doherty was older and alone. I don't recall being asked and we didn't do her inside her gate. Just the sidewalk in front of her house all the way up to the Feeney's. But of course now that house is owned by a young couple in their 30s, so......I laughed and backtracked.
It was just as pleasant as when I was young. Sometimes when I was in my teens I would shovel all the way up to BunkerHill Street. Something about the stillness and being alone at night outside.
Now I am just waiting for my coat to dry enough to put back in the closet, then it's off to bed.
At least I can say I did more than shower today.
Saturday, December 25, 2010
Dinner is at 1300 hours says the former QM2 from DDE-859
It's not the best day, but it's far from the worst.
Last night was Christmas Eve at Grace's and Dave made a ham that was FABULOUS!
My sons will be here soon.
Jen says our cousin Chrissie is coming by after dinner. Chrissie is toooooo much fun!
I hope everyone who stops by here has a great day and if you are just a fraction as happy as I am, you are lucky.
Friday, December 24, 2010
Thursday, December 23, 2010
Today was the last test over at Tufts/NEMC. It was an hour long MRI. Except for having to will away a charlie horse in my foot for the last 15 minutes, it was fine.
Afterwards, I headed over to Kendall Square and saw "The King's Speech". I loved it and highly recommend it. It was a great way to end the day.
Plus the day started off well. I met up with my niece Genevieve and her friend Angeline for dim sum at Empire Garden. It was good company and an interesting first try.....but I think 1:45 pm was too late to show up there. Not everyone came over with stuff. Although I like the beef in the long noodle-like covering. I wanted to try sticky rice and that wasn't offered. We are going to give it another shot at some point, but in the morning since Angeline says dim sum is for breakfast.
Wednesday, December 22, 2010
But this week has been too much work and not enough rest....and no fun!!
Monday - drive to NEMC for dentist, vascular access check and meeting with the social worker, then Kingston in the snow, then making my way home on the T
Tuesday-up at 0630 and taking the T to NEMC for X-rays, EEG, EKG, blood work (13 vials) and a PFT, then the T home
Wednesday-bone marrow biopsy
Thursday - MRI - and finally something fun! Before the MRI my niece Gen and her friends are meeting me for dim-sum at Empire Gardens in Chinatown.
I had wanted to go see "The King's Speech" on Monday night. It opens Christmas Day, but hey, it's Boston, there were sneak preview showings at Kendall Square. But Monday didn't work for everyone...then Tuesday didn't.....then Grace tried to convince me to wait for next week. But I hate crowded theaters. If I wait until school vacation and wide release they will want to go to a mainstream theater. I want my sneak preview at Kendall Square!!! I also want to see "Bhutto" & "The Tempest"
Friday is Christmas Eve Day and I was hoping to go into work and let the girls leave early....but the weather forecast does not look promising.
What you don't see in this list is a down day.
Que My Marine.....It's not my fault!
Monday, December 20, 2010
My Dad is psychic! I walked in the door and he said "Want some hot cocoa?" How did he know?
OK, so the dentist thing. Two fillings and a cleaning before mid-January and they will sign off on me. The irony? I need the fillings because while in chemo I clench my teeth in my sleep and cracked the two teeth, which caused me to lose the fillings. The people in the Dental Building at Tufts are very nice and patient. But it was a bummer to get scripts to deal with the mouth sores they assure me are coming and the dry mouth chemo has caused.
On the "vascular access check"....I failed. I will have to have a line inserted. I keep asking why they are so stressed about it. I know it's not the ideal, but on the bright side....I will be able to go to the bathroom by myself. If you do stem cell collection the way they want, you are stuck for five hours with both arms outstretched. Denise (my transplant coordinator) said it means your arms get tired, you can't feed yourself and you have to use a bed pan. So now that they have said I can't do that.....I can't say I am all that bummed out.
The last appointment was the social worker. Apparently I am just sane enough for her to sign off on this. Seriously, she told me that she is worried that someone as self sufficient now has to give over so much control. I told her it might be a problem, but it's my parents that are taking care of me so it's ok.
She asked questions about family and friends and mentioned that she looks forward to meeting my sons. I told her that was unlikely. I explained that very few people will be allowed to visit. So.....Judith is worried about that. I told her she could relax, I have a very active online life and I will never be bored or lonely as long as I have the laptop......right?
I just see no need to subject my family and friends, in particular my sons to my pain and suffering. So she said "Well, it's not carved in stone." I let it go at that.
Finally, I was free. It was an hour later than planned, but I headed off to meet up with Tom. It was the dumbest mistake I have made in a while. The driving was horrific!!!
Then I did this funny thing. I was hungry. Because the dentist was first, I had no breakfast. They put some fluoride goo on my teeth and asked that I not eat for an hour. So even though I had time and money. No food. By the time I was driving south on route 3 I was STARVING! So I bought a bagel and a tea at exit 14. But the driving was so bad I stuffed that bagel in my bag.
Later when I was in Walmart, I grabbed some cookies. Even though I was sitting for 20 minutes waiting for the train, I didn't have one. I also forgot about them on the train. My stomach was growling loud enough to wake the dead.
Finally, when I got to South Station, I grabbed a sandwich. But I didn't want to take the time to eat it, because the train was 20 minutes late getting in and I wanted to get to my parents before they started to worry.
By the time I sat down with my sandwich and my hot cocoa, I was shaky, lol.
I love Au bon Pain's Caprese sandwich. I was too tired to eat more than half.
Anybody want a cookie? How about the apple strudel or the pretzel I also acquired because I was hungry...but didn't eat.
Anyway, it starts all over tomorrow with X-rays and PFTs and EKGs. But you won't hear me whining! This beats infusion by a country mile!
Friday, December 17, 2010
"Twas A night in December"
This video reflects the participation of more than 40 commands worldwide.
Service members from each of the services, stationed everywhere from Afghanistan to Antarctica, helped make "Twas a Night in December," a variation of the popular holiday story rewritten with a military twist. Country music singer and active military supporter Toby Keith introduces our holiday video.
It's less than five minutes long. You will have a smile on your face afterwards.
Click the link and also be sure to "like" it. Send it to your friends, post it on your Facebook, Twitter it.
Right now it's had 12, 706 hits. I want a MUCH bigger number! UPDATE - 17,691 as of 0825 Saturday. That's good, we can do better. 24,793 as of 2300 Monday. 42,476 as of 1700 on Christmas Day. Come on, let's double this by New Year's!
The great and powerful goddess of the Naval blogoshpere commands it!!!
I am so excited about getting out of infusion early that I am pushing it.
Wednesday went really well and I am really happy. How I feel lately kinda reminds me of "nesting" at the end of my pregnancies. I am sure it is just some subconscious way of trying to gain control over my life.
I missed the commuter rail on Wednesday, but Tom just came and got me at Braintree. He rearranged the storage facility and next thing you know.....everything except my bed was inside. I don't know what I am going to do about the bed. But that's minor.
Tom had something to do at noon and I dropped him off pretty darn close to that.
Trish and I saw "Tangled", it was cute, the popcorn was uber fresh because it was the first show of the day and I had plenty of M&Ms. CVS is running a sale, 2 bags for $5, so they were in my bag. I got some last week and my Dad yelled at me for buying more. So, I threw Trish under the bus and said she bought them and left them in my bag.....sorry Trish.
Then I went into work and started working on my desk. Just before I left I gave Nic the good monitor because....I wasn't going to use it. And now I have stuff from the house. Plus my work keyboard was so worn you couldn't see the letters. People were always asking how I used it. I told them that I knew where the letters were, duh! And if they beefed I told them "Well, stay away from my desk." So Nic helped me straighten out all the stray cords and hook up the new monitor and keyboard. I vacuumed. I was breathless, Bette told me it was stupid to exert myself. But again, there is something that is really making me feel good about getting things in order.
I ran into two of Frankie's friends and they talked about missing me and I miss them and I got a little veklempt. It's a funny thing about Frankie's friends....for the most part they are motherless. Two of them, their mothers passed away from illness; another has a problem that keeps her away; another of the boys live with his Dad and I have never heard mention of the mother. I am sure that is part of why they feel the way they do about me....I'm the last one left. They must have called Frankie because I got this series of text messages about how much he loved me and how sorry he was that things were the way they are. I am so lucky to have the sons I have....and their friends.
Anyway, then the whole gang went to TGI Fridays and had apps and drinks. I stayed until I could feel the pain and tingling climbing up my legs and my tongue got numb. The drive back to Boston was pretty was easy.
So all in all, Wednesday was a great success!
On Thursday I wanted to go see my Aunt Teresa. She is travelling to Vegas to be with my cousin Jess over the holidays and by the time she comes back, I will not be visiting people. So on the way to Wilmington, I got off in Stoneham to get some Italian cookies at Colarusso's. Mmmmm! I also go a cannoli for my Dad and a Neapolitan for my mother (and a half moon, in case she wasn't in the mood for the neapolitan). I could camp out in Colarusso's!
We had a very nice visit and I got to see my cousins Kathy and MaryKate as well. My brother Frank showed and we all had lots of laughs. It went just as I wanted.
On the way back to Charlestown I had such a longing for chicken fingers. My aunt loves Chinese food and she and my brother were comparing their favorite local places. The conversation turned to Chinese food at least 3 times! So I called my friend T. "I am driving down 93 back to Charlestown, where can I get good chicken fingers?"
He told me, Speedy Wong's, but it wasn't called that anymore. I was surprised. I mean, Speedy Wong's was ok and there are great Charlestown/Speedy Wong's stories. But great chicken fingers? Really. He said they really were. So I stopped by and it was very clean and very busy and the "Wong" part for the sign outside was blanked out with something. They offered small servings - something I don't see many places doing anymore, so I got some noodles and chicken chow mien too.
Fabulous! More astonishing, my mother tried and loved the chicken chow mien. And she is ridiculously picky when it comes to that.
I topped that off with the last three episodes of "Boardwalk Empire" on HBO.
So, this morning? When the alarm went off? Paying the price....lol. I am nearly numb and what isn't numb hurts. Helloooooo pain pills!
Oh well, I am still happy with the two good days and better days are coming soon. I have just a little Revlimid left to go.
And I will be perfectly upfront here. I plan on "overbooking". I am going to push like this every chance I get.
Wednesday, December 15, 2010
I was up at 7 am. I am showered and all my dry skin has 2 inches of cream on it. My hair was like seaweed in the bathtub drain. I hope they figure this out soon.
Anyway, I am taking the 9 am commuter rail to Kingston. Tommy and I are going to work a little on the storage facility. I still have a few possessions out and about and I want things settled. I want to know that when I begin this nonsense in mid-January that things are in order.
I figure there will be no helping myself between then and about April. It will be just me and the laptop laying around.
Tom is going to have the van. So that will be set, no worrying about storage or parking and it will get good use.
Frankie and I have a plan.
So come the middle of January, I can just drift.
After doing something productive, I have allowed my friend Trish to talk me into going to see "Tangled". I am not one for cartoons, but she asked, so..... On the bright side, there will be popcorn and M&Ms and Coke. I know I said lots of water on Monday and there has been and there will be more, even today. But geez, gimme a break, it's a movie.
I will see Frankie at some point today. And then cap it off with dinner with everyone from work. We usually have a party at work, I don't know what changed, but they have decided to meet at a restaurant.
So...see you all tomorrow. Tomorrow might be a big sleeping day.
Tuesday, December 14, 2010
I made my bed, cleaned/sorted some stuff. Made two important phone calls.
Then I decided to take a bath. The main bathroom is on the second floor and my Dad has this little office right outside. There is a computer and a stereo. He plays computer games, probably part of why he is so sharp at 76. He plans out his day. And he plays music. It's the usually what you would expect....Sinatra, etc. So he wasn't there, but the music was playing. I am enjoying a nice relaxing bath. And on comes.....
...and I sink lower in the tub and close my eyes......
My Dad walks somewhere nearby singing along in his best Barry White baritone. I said it was his best...I didn't say it was good.
I am soooooo disturbed.
Monday, December 13, 2010
There was pizza from Jenny's! Not onion or garlic....but let's be realistic, this is my father's house. It was accompanied by chips and Coke and......
I promise there will be lots of water tomorrow.
My father saw the bag of M&Ms "Did you steal them from my bag? I am rationing your mother?" This is a big joke because my mother eats like a bird, as they say.
Then I relay my good news which is actually more than I told you in the post below. There is a small chance that my fatigue and hair loss can be temporarily reversed. It will definitely fall out when I take the Cytoxan in January. But it is unusual to lose hair on Velcade. Perhaps it is related to my thyroid. I have fatigue and hair loss I was attributing to Velcade and overly dry skin I was attributing to Lasix. But Kate turns the Rubik's Cube and says, that fatigue, hair loss and dry skin can by related to thyroid problems. They are testing my blood.
My father asks why I want them to reverse it.....don't I want to be just like him? LOL! When I was young he used to tease me that early gray ran in my mother's family and early baldness ran in his....if I was lucky, I'd get both!! Hahaha! I started graying at 16 (very helpful at 17 when sneaking into bars. no one cards the gray haired girl). But it wasn't so funny when I was pregnant with Frankie because my hair started falling out. Two big patches, one on each temple. I almost lost my mind. But then he was born and the hair grew back. That gave my father a lot of laughs.
I really would like to hang onto my hair at least through New Year's and my cousin Liz' wedding!
Now it's off to bed.....10 mg Revlimid, 1 mg Ativan, 10 mg oxycodone, a baby aspirin. With a big glass of water.
I really feel like I will have a good day tomorrow and get something accomplished.
You know what's awesome about blogging? You can do it with a mouth full of M&Ms!
It's just as crowded up here in infusion and there is no chair for me. They pull me in some little meeting room to put in my IV and draw my blood....then it's "catch and release" since nothing can happen for an hour. I go get a cup of tea, make phone calls, fool around online, etc.
Then a chair opens up and Kathleen tells me that today is pomidrinate. That's then one that takes two hours......so.....it was a good thing that I didn't get valet, since they close at 4 pm. Kathleen starts the steroid (20 minutes) an I ask her to page Kate, my nurse practitioner. Kathleen says she already has. LOL! Some things happen before I even think of them.
Kate comes in and I ask if she's ready for my problems and whiny weekend story. Kathleen comes in to administer the Velcade and start the pomidrinate. Kate uses this opportunity to step back into the hall and gets me two tootsie rolls. Very smart!
We talk about my bald spot, my IV site bruise, my leg/ankle/hip pain. I ask if I am her most difficult patient. She says I am challenging, but that's a compliment. She thought my story wasn't that bad. She was afraid I was backing out of the transplant. Like I could get away with that!
Kate decides we will bring Dr. Miller into this conversation. He holds my right leg, which is the one that hurts today and moves his thumb up my shin. It hurts. He is not pushing really, but it hurts. It aches with no touch. but his thumb hurts.
This is likely peripheral neuropathy from the Velcade. since the velcade has produced such great results in getting my IgA number, they decide to SKIP THE LAST INFUSION!!!!
M&Ms all around!
When I leave here shortly, no more IV chemo until at least mid-January. I still have to take the Revlimid until sunday night. You know I asked. I was offered a gift....I asked for two!
So last night Kevin threw open the lines and asked people to call in an give a shout-out to troop supporters. I called in with this local story -
iPods for Veterans Continues Work Into New Year
Stepping off a 10 and-a-half-hour bus-ride from Washington, D.C. at 2:00 a.m. would make anyone more than exhausted; but five, very dedicated, men who help make up the iPods for Veterans group could not have been in higher spirits this last Tuesday.
"There's nothing like this," said U.S. Air Force veteran Paul Cardello, organizer of the trip and co-host of WCTV's Sports Forum. "There's nothing better than this."
Cardello and his co-host Wayne Fox, camera and sound guys Ron Buccheri and Don Leard, and Post Commander of the Billerica Veterans of Foreign Wars John Parker spent their entire Thanksgiving weekend in the nation's capital handing out iPod Shuffles and 300 magazines to wounded veterans – and they can't wait to do it again this Saturday.
This Saturday, the same group will be visiting Bedford VA Medical Center to hand out the remaining 23 of 82 iPod Shuffles they bought with donated funds.
A number of businesses and people in Wilmington helped to make this second trip down to Walter Reed and the National Naval Medical Center in Bethesda, Md., possible. Sunrise Market sold patriotic cookies and matched the $50 raised for a grand total of $100 for the cause. Rocco's Restaurant also helped raise funds for the group by matching the money in the donation jar at their bar for a total donated amount of $150. But the two big players in this donation-drive were Textron Systems that donated $1000 and Mary Lou and Dick Looney, who gave $1500 of their own money.
Paul Cardello lives in Wilmington, Massachusetts and is a great example of local troop support.
H/T to my cousin Gregg who told me about this great story. He knew all the details, Paul Cardello is his father-in-law!
Sunday, December 12, 2010
Earlier, he had called up to me...."Diane, what are you doing today?" I said there was nothing. "Ok, 'cause everything after 2:30 is Patriot's time!"
Kick-off was 4:15....but there are pre-game activities. Sure enough, he had everything done by 2:30.
BTW, for all my grousing - and My Marine pointed out today that I am "an exceptional grouser" - about the flat tire & the $337.00.....I lucked out. It happened right at exit 8 and I wasn't alone and someone came to get us. It could have happened during my road trip far from home & that would have been awful.
I am listening to @punditreview & @punproducer & @McQandO on Pundit Review Radio on WRKO. They are talking national politics for political junkies like me.
Saturday, December 11, 2010
I got up at a decent hour, showered, dressed, cleaned my room, had breakfast (hehe) and went off to my family's Christmas party. It was excellent! My cousin Liz, with help on the party favor from her sister Sue, did a fabulous job. The party favor was a deck of cards in a plastic case with our grandparents wedding photo on it. It's usually a Christmas ornament, but this was better.
I am not crazy about the venue, their food's blah...but that's not the important part is it? The important part is all my uncles and aunts and cousins being there. And that part was outstanding.
Plus Liz ( or somebody) got this really great Santa Claus. We always have someone play Santa and give out presents to the kids. Every cousin that has a small child brings/sneaks in a present for Santa to hand out. I pointed out to my uncles that now that I live with my parents again, they really should have brought a present for me. They agreed...I was rooked.
Anyway, usually Santa shows...HoHoHo!....here's your present....Merry Christmas....goodbye! But this guy sat down and read the "Night Before Christmas" with lots of personality and led a song and did a magic trick. I was sorry we had to leave, but after being there, standing, walking, visiting for three hours, I was ready to fall over.
Plus, it was kick-off time for the Army/Navy game and my Dad and I had to get home...
So, we missed the actual handing out of the presents. Whatever that guy cost, it was worth it.
Once I got in the house I went right up and fell asleep for the first quarter of the game. I surfaced for the second quarter and did some #ArmyNavy on Twitter. (Sorry I wasn't more help @KissMyGumbo) and fell asleep during half time until 8:30. Holy crap! Talk about low energy, lol. I have described this before, but after about a week of chemo, I feel like I am wearing a lead suit. Think about it. Last Saturday I got up, visited the Philadelphia Seaport Museum, the Cruiser Olympia, drive from Philly to Boston, attended my niece's Daiquiri party and lasted until midnight. Sure I was slow, but I got a lot done. Today,...not so much.
My cousin Liz is getting married New Year's Eve and I am psyched that it happens fifteen days after the last infusion and eleven days after the last Revlimid. So I should be up for the night.
Anyway, now it's 10:48 at night and I am eating leftovers from Friday's baked haddock (mmm, I love baked haddock) because I was hungry to the point of feeling nauseous. I can't go right back to bed, because that will just give me indigestion. But I can't stay up past midnight or I will miss stuff tomorrow.
I just came back to my room from showering (bedroom on 3rd, bathroom on 2nd floor) when my mother called up "Are you coming down for breakfast?" I said no because I try to plan this out. If I am leaving the 3rd floor, I try to arrange it that I am not coming back up. I do everything I have to do, pack my laptop, etc. I want to make sure there is not some random trip to the 3rd floor for something trivial.
Stairs kill me - did I mention on last night's T adventure that the escalator was out a tBraintree and I didn't even see one at Andrew??? And you can't hang onto the banister even if you are on Z-Pak and covered in hand sanitizer.
So I padding around getting ready when my Dad is at my door - "Here." and gives me a plate of scrmabled eggs, he makes perfect scrambled eggs and two slices of bacon.
Off we went to Boston's of Plymouth where we had a nice lunch and talked about all the geeky stuff we like....War of 1812.....some ancient Roman cult.....the objections of Spanish economists to acronym PIGS.
Then we returned to the pharmacy, the Medicine Shoppe in Jabez Corner. And the most bizarre thing happened. It's steroid day and you know what that means, right? Yeah, well apparently not always. The pharmacist gave me a hard time and I apologized. And I can't explain it. I can't believe that I did not go across the counter and rip his head off. He called me up to the counter by my first name, not a deferential "Mrs. Miller" and then said "You need to use the same pharmacy." I was baffled, did he not want my business, or was he chastising me for not giving him all of my business. "You haven't been here in a year." He kept smiling in this condescending way and shaking his head. "You're lucky I have these!" I was explaining that I came because we were having lunch nearby and I wasn't living down here. I have no idea why I was explaining ANYTHING!!! He jerked his head in the direction of the Jordan Hospital and said in a conspiratorial tone "I only have these because I am right near the oncology department. You need to call first." What does he care if I want to waste my time on a wild goose chase. And for the record, I have called pharmacies first to see if they have this on hand and they won't answer me because it's oxy and they don't want to get robbed. So right there, that's a stupid statement. He ran my bank card and gave me the drugs and I walked outside. I turned to Tommy and said "What the eff was I so nice about in there?" Tommy laughed and said he didn't know.
So, fine, we got to my work to get the other drugs. I have my mail order stuff sent to work because there is always someone there to sign for them. We talk to the girls and we have some laughs. I am better.
Then we go and meet Frankie. I miss just hanging with them. We make arrangements for how everyone is getting to the big Kelley family Christmas party Saturday. Tom is going to drive me to Malden, keep the van and drive himself and Frank to the party.
Frankie goes off with Billy and Tommy and I head for Malden.
That's when I got the flat tire. We get safely off the road, call AAA, get towed. They can't fix the tire and there are serious problems with two others.
$337.00 I don't have.
The van will be ready tomorrow. Tom's girlfriend comes right down with her car so Tommy can drive me to the train. I call Frankie, he will get another ride for himself and his brother. He says he will give me some money toward it. I tell him I am just being whiny about the tires, but really...$337! It sucks! He says "You are supposed to say thank you, I love you" I laugh and say just that.
Tom drops me at the train. It takes an hour to get from Braintree to Andrew Square because of a problem in Davis Square. I can't stand it one minute longer and call my friend Mike. "Please come get me at Andrew Square". He is out with his new g/f and they come get me. I am sooooo grateful. He wanted me to meet the g/f..so two birds.
Tonight I was supposed to get to Grace's and my goddaughter Debbie was going to dye my hair. But that was clearly out. But randomly, I decide at 9:45 pm that I will do it myself. I am trying to concentrate on my hair, but I keep thinking about how concerned they were in infusion yesterday, the weight loss, the cold. And the most ridiculous thing, I was asked if I was optimistic and happy about the upcoming stem cell transplant. Isn't it enough that I am doing it???? No I am not happy! So I try to pull my attention back to my hair. I am doing just that when I part it about two inches above my right ear and there is a bald spot a little bigger than a Kennedy half dollar. I am mesmerized.
Then I hear someone beeping out front. It's after 10 pm. Who is beeping??
I was incensed!
I pulled my gloves off and went to the back door. My hand was on the knob. I reached for the lock. Someone was about to get a severe beating. I don't know what stopped me. But I picked up the cell phone instead.
He couldn't even understand me at first. "Stop, take a breath. Maggie. What? Maggie. Start again. Maggie. Maggie. Maggie."
I did. The weight loss. The pressure to be cheerful and optimistic. The tire. The money. The stupid pharmacist. The bald spot. How relieved I was that I found it and not Debbie. The guy beeping his horn.
By the end he made me laugh and said "Imagine that, I saved the life of a stranger tonight. I am a great humanitarian."
Yeah, you are. And since you are on the West Coast, I can call when it's late and not worry. The right place at the right time, it's what makes him the favorite.
Thursday, December 09, 2010
Today was infusion. I barely made it. I rolled out of bed after 11 and had time to shower. But a mad search for my car key (it was off the key ring ever since I valet parked it at the hotel in Philadelphia) took up all the breakfast, hair-combing, book packing time.
I know I looked pretty scary because as I walked down Elm Street, my cousin Pippi didn't recognize me until I spoke to her. And if I needed any confirmation, the look of distress on Dr. Miller's face when he saw me in the hall and said "What's wrong with you?" took care of that, lol. "Just a head cold. I'll be fine." I replied. I was walking back to infusion from Au Bon Pain with my chicken sandwich and some delicious sweet potato chips. If your time is limited, you shower, because there is always food to be had on Washington Street!!!
Well, I have never had someone take a head cold so seriously. They gave me Z-Pak. I didn't even ask.
But that wasn't the funniest thing. Every time I go, they weigh me and take vital signs. Today they weighed me twice because I lost 11 lbs since Monday. Hello! They are worried; I am not. They want to know what happened. ME TOO!!!! CAN YOU MAKE IT HAPPEN EVERY WEEK!!!
Am I dehydrated? I promise them I have been drinking tons of water and juice and tea. But really, lots of water because the Nyquil and the daytime cold med have my mouth all dried out (and my face, I am wearing thick face cream and I am still scaly). They ask if I am "voiding". Yes, yes and I think of the dehydration charts on Navy ships that explain how to tell if you are dehydrated by the color. I am "functional" I tell them. They ask if I am eating and I say yes, but then I hesitate and say but not today.
So they ask if I can stay for a bit longer than usual and let them give me some IV fluids. That's fine because I have no plans and I have a metered spot, so I don't have to worry about the hospital valet closing at 4 pm. I figured, my freebie spot at the bottom of Elm Street will be gone, but you win some you lose some. Charlestown is full of cars and the spots near my parents house a resident permit only. Get a little further away and there are some 2 hour spots. But there is a spot at the bottom of the street with no signage and I stopped the parking enforcement person (I think she is a friend of my sister Jennifer's) and asked about it. I got confirmation that it's safe.
Anyway, I got the IV, they debated on giving me the Velcade because I was sick....but then went ahead with it. They scheduled the bone marrow biopsy for December 22nd - that's when we find out if this knocked me from 70% involvement to 20% or less. They seem confident they have. I left at 5 pm......great time to drive from Chinatown to Charlestown, lol. Filled my Z-Pak script and guess what???
My fab parking spot was waiting for me!!!
And my Dad made me a delicious cheesesteak sandwich. Better than Geno's! He might be the best in Philly, but my Dad is the best in Charlestown!
They promise that I will feel much better tomorrow.
Life is good.
Wednesday, December 08, 2010
When I got in the house I had stuff to carry and I put the cheese in the fridge and left the nuggets on the table. I carried what I could upstairs, my Dad carried the rest. When I got upstairs I had to lay down for a while. Then I was called down to dinner. Grace, Dave, Gen, Debbie and Jen were there for dinner too. It was very nice.
After dinner I went back to bed for a bit, hoping to come up with enough energy for the Christmas Tree Lighting event aboard USS Constitution. That didn't happen. I stayed asleep for hours.
I got up to eat a little something and watch "The Walking Dead".
Where are my nuggets?!?!
The next morning I asked my Dad - "Your sisters and nieces ate them allllll up!"
Grace & Jen came by to take me mother shopping for an outfit for Liz's wedding. I wasn't invited.
I want to try some Middle Eastern food and one of the highest rated restaurants in Boston is Tangerino and it's eight blocks away. I want to go and have tapas. But it's on the other side of the Bunker Hill monument. In other words, up and down Breed's Hill. I might make it there, but I would have to lay down on all their pillows.
Sunday, December 05, 2010
I missed the Christmas Tree Lighting aboard USS Constitution - the fail referred to in the title of this post. The pics are lifted from Old Ironsides FaceBook page.....are you a fan??
Saturday, December 04, 2010
The Independence Seaport Museum was more entertaining than I expected. On top of all the nautical/Navy/ship building stuff.....I learned the story of the Slinky! Unexpected and delightful.
Their gift shop filled my souvenir needs....bonus!!! No need to traipse up to Market Street and search for a parking spot!
The drive was 6 hours with one rest stop, one Starbucks stop and two traffic jams. The Starbucks stop was a small town in New Jersey where the people were driving like insane people. Now if I think that....and I am a crazy aggressive driver.....well, you are insane. The Starbucks was in Yardley, New Jersey on route 332. First I watched a guy block a woman into a parking spot and when she finally spoke to him he burned rubber out of the parking lot. then when I went to pull up a driver racing through the intersection nearly hit me and then drove into the oncoming traffic rather than let me out. Finally, as I turned at the intersection there was a woman in an SUV trying to get the jump on the red light by driving into oncoming traffic....me! I was happy to get back on 95.
And the other stop was at the Vince Lombardi rest area on the NJ Pike where I was robbed! $6.11 for a medium BK Coke and a can of Pringles. I didn't want Pringles, but they didn't have plain chips. One traffic jam was the cross Bronx Freeway. High volume of traffic, Iunderstood. But the other one???? Connecticut on 95, for over three miles between exits 19 and 24, we rolled slowly. The flashing marquees told us it was an accident....so when we get to exit 24....we should see.......an accident.....right?
No. the accident was on the other side!!!! Seriously? If there is one thing I really, really hate, it's the traffic jam because people are rubbernecking. Cops should ticket people. Or at least be on my side staring at people in that fierce way they have and waving people to drive faster.
Now I am at Deb's Daiquiri party. It has turned out to be a Daiquiri/Margarita party. Wish you were here SK, they have Patron!
Grace met me at the door "Why do you have all these bags?" I was almost too tired to explain that I needed something out of each bag....snacks for the party....souvenirs....laptop.....PJs. She looked confused.
"Oh, I'm sleeping here. I thought you knew."
Today I have to grab some keepsakes to bring home. I used to buy things for everyone in my orbit, but in my current reduced circumstances, I just grab mugs for Grace & Jen and something little for my parents. There is a place less than a mile away & I am going to see if the hotel shuttle can get me there. It's near the Betsy Ross house, which I didn't get to....so maybe two birds...
Then on to the Cruiser Olympia....now that I've found it! LOL! When I Googled the hotel it looked as though the Independence Seaport Museum was a block north of the Hyatt. Perfect! Then when I checked in, my room faced north so I should be able to see it, right? Wrong. It was dark and all I could see was a ferry at the end of Market Street. Then I thought, maybe it was too dark to see.
But the next morning I look out at my view of the city to the northwest
and a little further westand the waterfrontand there is no other boat of any kind. Hmmmm. Eventually I realize that this building right below my window is the Museum. But still no sign of a ship. How would I explain this to My Marine? To LCDR Berube, USNR? To CDR Salamander?
Then as I was on the last leg of the trolley tour yesterday I found it! We were approaching my hotel and the tour guide was talking about Moshulu. Moshulu is a ship that was converted into a very expensive restaurant. It is less than 2/10ths of a mile from the hotel to the south. Then the tour guide directed our attention behind the restaurant....
....where the Cruiser Olympia is docked! He's reciting the history, I am craning my neck to see it. Well that makes sense, huh? Come see the Cruiser Olympia at the Seaport Museum! Except for the fact the museum is north of the Hyatt and the ship is to the south. The important part is that I found it.
Once I have all this wrapped up, I have to hit the road to be at my sister Grace's house at a decent hour, My niece Debbie is hosting a "Daiquiri party". That will likely keep me out past curfew, lol. I don't like going to my parent's house after 9 pm or so. So, I will just sleep at Grace's.
So....you're thinking....Maggie, how can you top all that? What's Sunday? Laundry? Lazing around?
Sunday the 5th at 4 pm I will be aboard USS Constitution with my niece Gen and whoever else we can round up. You should come too! Join us for Old Ironsides Annual Christmas Tree Lighting!
You can keep up with this and other events by "liking" the USS Constitution Facebook page.
Friday, December 03, 2010
Now I am not saying this was a bad idea, just not one of my shining moments, lol.
So you know I have given lots of lip service to not "overbooking"....no, seriously, sometimes I tried.
Just not today. I tried to see everything I could. Which mind you, was not a lot. I am slow, I am easily winded, I have a depth perception problem. LOL, I'm blind in one....no, I'm kidding. But I did push it. So at 2:30 I came back to regroup. I washed my face....brushed my teeth.....took a pain pill.
Then I went up to the Reading Terminal Market. It's on the list of "must see" things in Philly. And some people had made some suggestions on lunch, which I never got to, it ended up being dinner.
So, what was the bad idea part? Going into a place that sells treats when you're high. I mean it's not like I am tripping....but let's be honest - I will need to look in my nifty Route 66 tote (that I got in LA w/Stella when she took us on our tour) to see what I bought. But whatever it is, 90% of it is not good for me.
I was advised that after a Cheesesteak, the next most famous Philly sandwich was a DiNic's Italian-style roast pork. Sadly, they were out, so I got the second choice, pork w/cheese & greens (broccoli rabe). It was good but more than I could finish.
Next.....Flying Monkeys for a lavender cupcake....sorry, that's a spring time thing.
Beilers for sticky buns. These are carefully packaged, so I will bring them back to Boston
Miller's Twist for a pretzel - got distracted and ordered sugared pretzel sticks....mmmm
Bread from Metropolitan....and a pleasant conversation with the woman working the counter. We discussed the millet muffin that she offered me a sample of. I asked if that wasn't what they fed birds....well yes, yes it is, lol. Strangely, it was good. And the chocolate cake was unbelievable, but I did manage to resist that.
Besides...I had cannoli from Termini Brothers, lol.
I have a stomach ache just thinking about all of this!
Late last night, I realized that my current plan had me leaving Philadelphia around rush hour to drive through New York on a Friday night. Not a good plan. So I asked William Shatner for another night.
Now I am off to see the sights!
This person agreed that Reid would have been out but that there were other time & money concerns. He further stated for me to keep watching Nevada politics and there would soon be news. I said "Of course if he runs...I'll get over being peeved!"
And today I get this blog post in my Google alerts. Here's an excerpt-
Kirk Lippold, Carson City resident and former commander of the USS Cole when it was attacked by terrorists several years ago – announced his 2012 primary candidacy against Republican U.S. Sen. John Ensign yesterday. Well…not exactly in those words."
I'm over it. Let's go!
And to the person who correctly predicted that there would be news soon....can I have tonight's MegaMillion numbers too?
Thursday, December 02, 2010
Now it's 2021. Bed? Bath? Pool? I took a quick peek at the pool/sauna/steam room and it looks nice.
My hands are starting to burn so I have to be careful.
I'm having a hard time deciding what to do about dinner. I've looked at the room service menu and the prices are crazy. Must be lots of corporate credit cards being used here. I am thinking that for less than that I can hop in a cab and travel the 3 miles to the Philly Cheesesteak hub.....it's a "must-do" thing...right?
But I don't want to "overbook", lol. Historic Philadelphia is a place I have always wanted to see and if I wake up tomorrow with the fat face and the numb feet....I am going to be heartbroken!
So I left Norfolk yesterday much later than expected - do we sense a recurring theme here Maggie?
Anyway, it's not that big a deal. If I press on from here in a timely manner fine...if not, that's fine too. I've tried to be very conscious of the whole "overbooking" thing.
I was too wiped out from Tuesday and too late getting on the road to visit Richmond. But that was fine, it was "maybe" thing anyway. Norfolk was the primary objective and that was highly successful. Sure, Lucien will tell you about the ceremony and that was great....but I will tell you about cupcakes! LOL!
After the ceremony, when it was down to Lucien, his friends and myself, there was a tour of San Antonio. Nick & JR are his long-time friends who drove up from North Carolina to attend.
So for a non-Sailor, non-tech, non-weapons person, let me tell you why I am never bored on these ship tours. Because the Sailor who shows you around is deeply connected with his ship. You can not help but feel what he or she is trying to relate to you. They want you to see what they see. It's impossible to see the whole ship at a whack, so they are showing you what matters to them and it draws you in.
After that we headed off to Ghent, a neighborhood in Norfolk. Lucien wanted to take us to lunch in appreciation of our travels to be there. He selected Bardo Edibles & Elixirs after quizzing me on what I was up for. Readers here know, lately that answer is "anything & everything". He already knew that Nick & JR would be happy...and we all were. It was Asian inspired/tapas style...and I loved it.
What was better? The company! The three of them, Nick in particular were carrying on conversations that made me feel like I was with my son Tom...so I was right at home. I got to ask a lot of the stuff that you don't get to communicating on blogs, Facebook, etc.
How do you finish off such a day? Carolina Cupcakes! Everyone is saying how smart YN2(SW) Gauthier is.....and taking BostonMaggie to a cupcake place proves it! ADM Harvey, I am sure your oatmeal raisin cookie was nice....but my "Cookie Dough Cupcake" beat it by a mile!
The Norfolk trip was a GREAT idea and I am so glad I made it.
Wednesday, December 01, 2010
The ceremony will commence following evening colors at sunset and a shot fired from USS Constitution's port saluting battery, and culminate in the lighting of the 18-foot tree near the ship's stern.
"We'll have cookies and hot chocolate, and most importantly, lots of children will be here to enjoy the Christmas tree aboard America's Ship of State," said USS Constitution's 71st and current commanding officer, Cmdr. Timothy Cooper. "We'll be holding a drawing to allow one lucky winner the opportunity to turn on the switch that lights the tree; I think that's a special way to create ties between us and community."
Additionally, USS Constitution has been assured that it is "very, very likely" that a special guest will be in attendance, who will be overjoyed to see all the little boys and girls present.
During this holiday season, Charlestown Navy Yard partners Boston's National Park Service the USS Constitution Museum and Old Ironsides are giving visitors the opportunity to design their own Christmas tree ornaments, and then hang them on the tree aboard the ship.
All visitors to the Charlestown Navy Yard and local families are welcome to stop by the Museum to create their own holiday ornaments with pipe cleaners, beads and lots of creativity! Boston's National Park Service provides the materials, the Museum provides the space to make the ornaments and the Navy provides the tree to decorate," said Anne Grimes Rand, President of the USS Constitution Museum.
The decoration station will be open daily at the Museum from November 20th - December 24th from 10 a.m. - 5 p.m. (except for Thanksgiving Day when the Museum is closed).
Celeste Bernardo, the acting superintendent of Boston's National Park Service in the Charlestown Navy Yard, said collaboration benefits the three partners just as much as visitors to the oldest commissioned warship afloat in the world.
"The strengths that the partners - the U.S. Navy, the National Park Service and the non-profit USS Constitution Museum - bring to events in the yard really keep it special," she said. "We all have our individual strengths, but we all share a common mission to celebrate the history of the Navy yard and the ship."
Tuesday, November 30, 2010
By the time the ride picks up YN2(SW)Gauthier's two North Carolina friends and I; gets us to USS San Antonio (LPD-17); turns us over to our ship escort who in turn delivers us.....
We missed the actual ceremony where CDR Overturf reenlists Lucien. LOL!
But we were there for the party!
I got to say Hi-How-A-Ya to my friend and fellow blogger ADM Harvey, although one of his staff slipped past me and I missed saying hi. But they are all really busy and they were leaving as we arrived.
It was my pleasure to have met CDR Overturf, who had a great USS Constitution related sea story.
Then it was off on a tour of USS San Antonio LPD-17 (You know who built it? The Ogre). I am really starting to pick up things in these tours of destroyers, frigates, LHDs, LPDs.
OK, I'll write more later....but I have to back to sleep. Meanwhile, you can read this.
I forgot to pencil in getting ridiculously lost trying to pick up route 13 from route 295 after the Delaware bridge. So I am much later than planned. Plus I sat in one of the rest areas and had a couple of laughs on the phone with my ex-husband.
So, I am here and set and will make my event tomorrow.
Tomorrow, USNI blogger and my friend, YN2(SW) Gauthier re-enlists aboard USS San Antonio, LPD-17.
I have something unique from USS Constitution. It will be the coolest gift... in my opinion anyway....
I'm sorry, is there another opinion that matters???
Sunday, November 28, 2010
So, it's not my cancer, but it's a lot more common and women should pay attention.
Plus, I appreciate the sentiment of the healthcare providers and hospital employees expressed in the video. I know that many people at Tufts NEMC are working very hard for me. I am especially grateful for Dr. Miller, Kate Adelstein, my NP, and the infusion room nurses.
In honor of my grandfather's brother Jim, a drill instructor with the USMC, who perished in the Cocoanut Grove 68 years ago tonight.....
This Day In History
Saturday, November 27, 2010
You know Spanish influenza entered through the port of Boston too. I'm just saying.
It's a crazy story.....
"While attending an urban development conference in Florence, Italy, last week, Menino scraped his elbow in the hotel shower. The mayor's representatives have speculated that the cut became infected.
The mayor, who has been treated at the Brigham for other ailments in the past, was admitted to the hospital Tuesday.
He was diagnosed with cellulitis, a skin infection, and septic bursitis in the left elbow, in which bacteria penetrated a fluid-filled sac that reduces friction between tissues.
He underwent a procedure Wednesday to remove bacteria from the sac, Joyce said."
Scraped his elbow in the shower?
Friday, November 26, 2010
Today was the last infusion of the 5th cycle.
I am drinking tons of water. I want my time off (now until December 6th) to be the best it can be. I think I remember that it helps me recover more quickly. But I can't be sure. Was it a plan? Or a successful plan? If it was successful before, will it still work now? I don't know, but someone please ask me Monday and then jot down the results.
Grace and I met with the transplant coordinator, Denise.
I was way out of it. It was a tough week. Some infusion rooms are shared, some are singles with a geri chair. Some have a gurney....today I was grateful for the gurney. I wanted to be clear for the transplant discussion, so I skipped pain meds and ativan. Poor Grace had to watch my face while they dug for a vein in my hand. With no pain meds....that was no fun. Then I laid down on the gurney, lol.
So in comes Denise with her files. We go over some routine stuff. Yes, I have multiple myeloma. I keep talking about it to people you know. My family. My friends. I keep saying it. I am hoping someone looks at me and says "Bullshit!" "For pity's sake, get a grip. It's no big deal." But no one does.
This is not to say that people are not cheerful and hopeful and optimistic. But no one tells me what I want to hear. I want to hear that I am wrong. That I have misinterpreted something.
One of the nurses reduced the process to this "We are going to bring you to Death's Door....and then we will rescue you."
I hear Father Mahoney in my head leading us in Stations...."I am wearied with sighing."
So Denise runs through things. Some things are not as bad a I thought...or at least they are horrifying in a new way, lol. The first part, the harvest, the collection part does take 14 to 17 days. But they are outpatient days. I can stay with my parents. Why is this better? Number one, privacy. For someone who exposes her whole life out here, I value privacy. But what price privacy? A bathroom on the second floor, a bed on the third floor. I can deal with that or work around it.
I ask her about the next bone marrow biopsy. I have had one and my "involvement" was 70%. I have been reading that some doctors will not do the stem cell transplant unless the patient's "involvement" is less than 5%. I am worried that if I don't hit 5% I will be disqualified. Denise says she will check with Dr. Miller, but she believes his threshold is 20% and I should not worry. He will not cancel it, he will postpone it. He will order two more cycles if I don't hit 20%. So that was a relief. Because to have gone through this only to be disqualified would have made me mental.
But then giving me the stem cells back is inpatient for three to four weeks. I am relatively sure that I will not be allowing many visitors. And those will be infrequent. I have already informed several people that they are "not" allowed to come see me.
Denise asks if we have questions. I tell her I know my question is silly, but it's my question. I tell her that the thing that bothered me most was during my last hospitalization, I couldn't shower and wash my hair, will I be able to do that.
Poor Grace! Poor Denise! I look at their faces. I won't have any hair to wash.
Denise leaves and Grace tells me I am obsessed with my hair. She may have a point.
Thursday, November 25, 2010
I did manage to make cranberry chutney. How about you Wendy? LOL
It's a little thing, but it's my thing. So it was important. It's a good thing it's not complicated. I still managed to make it as difficult as possible.
Yesterday was very draining, so I knew driving myself to the supermarket was out of the question. And Grace had already done enough for me. So I sent a text to my good friend Kathy and asked if she was headed out to a supermarket. Everyone has some kind of last minute errand. Well, except for my father who had everything staged and at the ready yesterday. It's a military operation. And might I add....always a successful one.
So, of course, Kathy had to go out and she and her son were happy to take me along. They teased that I might not be up for the "Bucket", their nickname for the big, Market Basket in Chelsea. I was so tired and afraid of getting separated, they were right.
On a side note, that is one of the funniest of my quirks. The fear of getting separated in a store. I travel all over the country by myself. If I go with anyone, we all have cell phones. I had cash for a cab home. Nothing could possibly have gone wrong. But it's a fear my father and mother planted in me as a child. if I am in a store with someone, I must keep them in sight. So I kept watching her son who was always walking off. LOL!
Anyway, I had the shopping list for chutney - it's not long - but no mental skills. I needed 1/2 cup of sugar. I bought a 5 lb bag of sugar. Did I really think my parents had no sugar? Really? There were several things like that. My father mocked me this morning.
On the way back, Sean took us through King Arthur's parking lot. Kathy made the traditional "Do you want a club sandwich?" joke.
Once I was back at my parents, a little energy burst came. Can't schedule them or predict them.....just gotta wait til they show up. I made chutney and brownies and listened to John Batchelor on the laptop.
So this morning, as I have for several years, I walked over to my Uncle Walter's house with four hollowed out oranges filled with bright red chutney. I only put his in the oranges....no one else appreciated the presentation!
I made it up the stairs to a comfy chair and the two Toms, Walter and I had a nice visit. Best part was it was a nice NORMAL visit. I don't mind talking about the multiple myeloma, or the chemo or the transplant.
But I don't mind not talking about it either.
It's important to hang onto what you can hang onto. That was something I got done like any other year and I am very pleased about it.
But I did mess up one thing. Grace always comes over after her dinner, around 5 or 6. I went upstairs for a few minutes at 4:30 and sat in my father's ultra comfortable recliner. I flipped through the channels for a moment. Oprah was talking about her interview with John F Kennedy Jr., from 1996. It was kind of bittersweet. He would have been 50 today. My Tommy walked through the room and said "You got that magazine." Meaning his political magazine "George". He was correct, I had loved that magazine.
I'm not usually and Oprah fan. I don't dislike her, I'm just not very interested most of the time. However, I'll always stick with a Kennedy story for at least a few minutes. Oprah talking about how after the interview she stayed with audience to talk about the question she didn't ask him - when was he getting married. Oprah is a woman intensely in the public eye and she was relating to JFK, Jr.'s his need to keep some part of his life private. The difficulties of having someone in your life who isn't in the public eye. She talked about what the person, who never sought the public eye, now has to take it on if they want to be with you.
Then she began to talk about his wedding which happened to take place shortly after the interview. It was a secret affair on some coastal island off Georgia. And as she spoke about what it took to keep it secret, you could see this struck a real nerve with her. She said it could only mean one thing. It meant he had people around him that he could trust.
What matters more than that?
Anyway, a few minutes later I was gone. I heard my sister's family arrive. I could hear them talking to my parents and my brother's family. It didn't matter, I could not surface.
I missed the whole visit. We usually sit back down at the dining room table and have dessert. Now everyone is gone and I can't find the blueberry pie.
Tuesday, November 23, 2010
Grace and I were born two years and one week apart. I am older. We shared a room for the first 18 years of my life with a short exception when we lived on Mystic and I had my own room.
Things were very hard. Grace is a neat-nick, I am a slob. I like to lay-about, Grace liked to do things.
I liked CBS Radio Mystery Theater and Grace had nightmares. She preferred a complete overdose of Barry Manilow. don't get me wrong...I liked him, I just needed a break after 3 LPs.....don't know what an LP is? Get out of my blog you whipersnapper!!
My parents constantly begged, counseled and ordered us to get along....work it out.
We did try at times.
One particularly fond memory is a summer we were about 14 and 12. We were in Rocky Nook and we made a plan to wake up early and have breakfast together outside. We put the two gymp papasan chairs off of the porch and into the front yard with a table between them.
I know cereal was on the menu and I think there were poptarts. Juice would have rounded it out.
It was lovely It was just as my parents promised. When we tried........
And just as my parents promised, I would grow up and my sisters would be my best friends.