Presents From Down South!

There has been a lot of sleeping going on, so I haven't written about two very lovely gestures by two of the Milblog world's greatest ladies. First there were these beautiful flowers from Andi & Mr. Andi....all the way from Florida. Andi is so thoughtful that she took time out of ramping up for the 2011 Milblog and her SpouseBuzz events to do something nice for me. Plus Mr. Andi is my favorite wayyyyyy down south Red Sox fan. He's a displaced New Englander and a really great guy. Then today, Fat/Shrove Tuesday there was a delivery of a Mardi Gras tradition from Greta of "Kiss My Gumbo".

Here it is - King Cake complete with Mardi Gras beads. I put the beads on and heated the cake per Greta's instructions. A piece for me, a piece for my Dad. Mum said no.....until she watched us gobbling it down, then she stole some of mine.I couldn't wait, I had to have the firsts bite before I took a pic. It was delicious!

2011 CNO Pool

***Monday the 7th ADM Harvey - 3; ADM Stavridis - 8; ADM Olson - 1; Greenert -1**
Rumor has it that the next CNO - Chief of Naval Operation for the United State Navy will be named in the next few weeks. So let's have at it.

Last time, I picked the winner, ADM Roughhead, with a little help from The Ogre. This time, being a little more experienced, I am going to make my own pick before asking him or anyone else. This matter has not been discussed with The Favorite Naval Consort as yet since we have been overwhelmed with my state. So whoever he picks......I am on record first. You are all witness and subject to being deposed when he attempts to cheat.

I want Admiral John C. Harvey, Jr., Commander, U.S. Fleet Forces Command.
ADM Harvey picks up Byron from Sal's front porch. Warrant Diver, also from the porch and various other perches, throws his weight behind ADM Harvey after conceding his own ineligibility.

I'll put up info on the others and take info on dark horses and dream candidates.
~~~~~~~
Admiral James G. Stavridis
Supreme Allied Commander, Europe
Commander, United States European Command
The Admiral gets his first vote from SteelJaw Scribe
Who also throws a nod to GEN Cartwright, USMC for Chairman Joint Chiefs of Staff. So we'll take your vote on that as well.
We're racking up some votes for Stavridis, both claimed and anonymous on Facebook.
As of Sunday morning, Adm Stavridis picks up Herb, Josh & one anonymous from Facebook, as CDR Junge.
Tim of AW1 Tim's blog votes for ADM Stavridis as does Seth from Facebook and Wendy of My Military Life.
~~~~~~~
Admiral Patrick M. Walsh
Commander, U.S. Pacific Fleet
~~~~~~~
Perhaps a SEAL?
Admiral Eric T. Olson
Commander, U.S. Special Operations Command
ADM Olsen gets a nod from NavyCS who says "I think SECDEF is prepared to move outside the expected. "
~~~~~~~
I am reminded that I forgot the current VCNO, apologies
Admiral Jonathan W. Greenert
Vice Chief of Naval Operations
ADM Greenert picks up his 1st vote from Galrahn of Information Dissemination with the caveat "Greenert will be CNO, Cartwright will be CJCS. I hope either Stavridis or Harvey is CNO, but the Navy these days is too parochial for that."
~~~~~~~
In the comments Delbert reminds me not to forget
Admiral Samuel J. Locklear, III
Commander, U.S. Naval Forces Europe
Commander, U.S. Naval Forces Africa
Commander, Allied Joint Force Command, Naples
but I can't tell if that's an actual vote. I've met ADM Locklear and found him to be charming, so I would be ok with this.
~~~~~~~~~~~~~~~~~~~~~
My Marine isn't interested in voting for CNO, but votes for GEN Cartwright for CJCS
~~~~~
Dark Horse Candidates -
CDR Salamander who in turn votes for "someone unexpected" - himself perhaps
Warrant Diver - frequent commenter all around the Naval Blogosphere and friend to this blog nominates........Warrant Diver, but concedes it's unlikely due to -
1) his lack of college degree
2) his numerous skeletons compiled as a junior enlisted and Chief Petty Officer and
3) his not being eligible to be CNO.
so he is throwing his support behind ADM Harvey and explaining that Olson is a No/Go in the comments of this post.

I've Been Sleeping.....A Lot

The first few days home I was sleeping 20 out of 24 hours. But that's getting better. The stairs were killing me, but it was good. You know the best way to get energy is to expend it. Today I made a total of four trips up and down. Annnnnndddd.....I didn't need to flop on the bed afterwards like a fish out of water. This is a plus.

I haven't been blogging, but I have been reading. Especially all the discussions about a "No Fly Zone" over Libya.

I recommend Sal's post over at USNI as a jumping off point (read all the comments too)

"No-fly Zone in Libya? Not without the USN CVN you won’t."

Grace and I were discussing it today while I was getting still more platelets. The nurse came in and scolded Grace that my blood pressure would skyrocket. Grace explained "No, it's kinda her thing." And sure enough it was just was low as the previous reading.

I'm Back With My Parents

They released me yesterday afternoon. Jen and Grace loaded me up and brought me back to Charlestown. My father met me at the gate and took my arm. I was perplexed, it wasn't icy. But just walking into the house, climbing the curb, the two steps from the street to the yard and the three steps into the house.........exhausting!

I was in bed by 7pm. Except for a few phone calls around 9pm, and trips to the bathroom, I slept until 9:30 am.

I'm gonna shower now. I am so happy and grateful to be back here.

Limbo

There was a power outage here at Tufts/New England Medical Center this morning. It lasted a few moments until some backup thing came on and there were minimal lights and machines. My bed was stuck in the up position. But that was fine, I had to start packing, right? Wow, that took a lot out of me and I only did half.

The nurse came in and announced my count was 1100. Really? I was perplexed. I had the bone pain, how could I have gotten nothing. Then she announced I'd have to have platelets before I left. I questioned leaving, didn't I need to have made progress? I knew something in this conversation was wrong, but............whatever........if I get near the door, all bets are off.

So I call Grace and text Jen. All the power comes back on, internet, TV, etc.

The nurse comes back and says "Sorry. I was reading yesterday's results. So we need to wait for today's." Yeah, ya think?

The team comes in and confirms no test results yet but I need to have 1000 neutraphils. Not 1000 white blood cells overall, but 1000 of the kind of white blood cell they want. I think yesterday's neutripil number was 500. The attending was quite clear "Not 900, not 950.....1000." But otherwise we are good to go.

Now I am wiped, between my very minimal packing and my team meeting and I fall asleep. My room got really warm during the power outage and sleeping in a warm room gives me weird dreams. So of course, I dreamt I couldn't get out of here.

I woke to the feeling something wasn't right. There was a man in my room headed for the door. I called out a "Hey, who are you?", but he kept leaving. I rang the nurse and started to get up. He turned to look back in the room through the glass and I pointed and mouthed again 'Who are you?" The rooms are very well sound insulated. He came in and identified himself as maintenance. Said he was checking the vent, something was wrong and apologized for waking me. Seems strange to let some guy in jeans and a polo roam into rooms. Yeah, the polo had a Tufts/NEMC logo on it......but I am one of the youngest people on the floor and I couldn't see it without my glasses.

Anyway, still no test results.

Whaddaya Want First?

The good news........

The bad news..........

Ok, good news. My white blood cell count is up. From 400 on Friday to 900 on Saturday to 1100 today. If it rises again tomorrow, I get sprung! During morning rounds the attending asked if I could give myself a shot of neupogen. "Nope! But my Dad can." He smiled and said that would be fine.

So, the bad news? Well this burst of white blood cells was brought about with some of the bone pain associated with the growth factor.....not as bad as after Cytoxan, but enough that I have been high or sleeping since Friday.

While it wasn't as bad as before and I am grateful beyond words for that......I spent all conscious thought clenched in a ball waiting for more. It didn't come, but it was exhausting.

It appears to have passed, but it could return at any point in the next week or so.

So that's my update. Fortunately I was able to surface for #MIDRATs and Pundit Review Radio.

Now, the Oscars - Go RESTREPO!!!

400

Parole deferred.

Yesterday 500 and rising.

Today has dropped to 400.

Yeah, I know it's not the end of the world.

Don't say anything nice.

Pillows, Take-out & Lotion

So there is this pamphlet the hospital produces for caregivers and it's giving me nothing but agita. It's designed for all bone marrow transplant patients. Allos are worse than Autos. I am an auto. Patient with other complications are worse, I have none. Some patients are old, I am not yet 50.

But my parents and my sister Grace are all over this.....Jen just shrugs.

I can't use any previously used lotion or lipstick for 100 days. My father was ready to go to my room and thrown everything away.

Clothing should be washed. Duh! But my Dad was ready to take everything out of drawers and rewash.

No restaurant or takeout. Argghhhh!!!! This one is going to kill me! The North end is a mile away....no pizza.

Then there was the pillow thing. The phamphlet says to buy new. This is ridiculous. The pillows were already new! Kate popped by to say that it was overkill and a hypoallergenic cover would do. Then last night Grace called to ask "down" or "feathers" because they were buying it anyway.

My mother has been ready to ground me over the Milblog Conference. So I am going have to be super good for the next eight weeks. No violations. No sneaking out.

No pedicure until I get over 4,500 white blood cells are 65% of those are neutriphils.

I'm going to make a new sidebar for all things I want and can't have 100 days. I leave for the Milbog on the 86th day - the transplant is Day 0 - today is Day 15

Yesterday's Feeding Frenzy Pays Off

As I explained in the post below, I had the hungry horrors yesterday. I was hoping it would lead to good test results.

I have 500 white blood cells. A normal value is 4,500 to 10,000. I have been running less than 100 for days. Finally, yesterday I was 200. Now today is 500! They say it should start doubling daily. I may go home this weekend.

The best part is that they are climbing without any bone pain, which happened last time fter Cytoxan.

I had told my mother earlier this week that they were hopeful of a Thursday discharge. She replied that if it wasn't Thursday.....they would need to keep me because there would be a storm on Friday.

Imagine! My mother was going to refuse delivery!

I Ate A Little Better Yesterday

They keep assuring me that this need for blood products is normal. We are still waiting for good numbers on neutriphil, but at least they have started to rise. I have explained repeatedly that i am simply a tardy person. I am very hopeful about today's numbers. My blood was drawn about 10 minutes ago. Yesterday I had the hungry horrors. I ate more yesterday than any other day or in some cases, days since I've been here.

It helped that Jen and Grace showed up with Dunkin donuts tea, a chocolate bagel twist, and a baggie of Jen's famous chocolate chip cookies. I also still had some of the oatmeal cookies that my Uncle Walter had brought on Monday.

Round it off with pretty good tunafish.....and I am hoping I have given my white blood cells an appetite and a reason to come out of hiding.

Walter and Tom were here for an hour or so. Jen and Grace hung most of the day. I got to talk to Tommy & Frankie. It was good.

Hey! What's For Dinner?

Platelets????? Again?????

I'm Almost Too Tired To Post

But today was so great!

My Uncle Walter and Tom came to visit with a present (they are so good to me) and homemade oatmeal cookies.This is my beautiful nautical themed scarf from the USS Constitution Museum Store. Do they know me....or what!

But the best part was my progress. I am disconnected from my IV nutrition. My body's violent rejection of solid food had ended. Still not much of an appetite, but what goes in stays down.

They think I will leave around this Thursday, the 2 1/2 week mark.

Yay!

What Is February 20th?

Why it's the kickoff to month long run-up to "Maggie turns 50 on March 20th"!!!

You've all be warned/apprised.....whatever you want to call it.

No Flowers Please

Wasn't that a Doris Day movie title? Anyway, I can't have flowers. Although I truly appreciate the thought.

I am at the "Grafting" phase, which feels like the flu.

Awesome.

Have you ever had someone happy that you had chills and body aches???? You would be as homicidal as I am.

Plus they gave me Decadron (steroid). I am not nice or kind and steroids remove my last filter.

Like the Eagles said "There's gonna be a heartache tonight I know"

And it won't be me. I don't have a heart...everything else aches.

There Has Been An Assasination Attempt on Princess Crabby!!!!

Summon My Grand Vizier!

Where is My Darling Chief!

Alert The Armorer!

Pipe The Favorite Naval Consort Ashore & send him to me forthwith!

Assemble the Full Navy Coterie!

I want My Marine!

This morning was a little more tiring that usual. I spiked a small fever and that sets off a whole lot of tests, etc. Including a visit from a very self centered phlebotomist. She had terrible bedside manner.

Anyway.

After all the poking and prodding and collecting.....I fell asleep. When I woke I was roasting hot. I occasionally get hot flashes, especially when I take steroids. For over an hour I thought I was in the midst of the longest, most torturous hot flash in history. Nothing helped. Not ice chips. Not a cold compress. Not laying on top of the sheets in my skimpy pjs.

Finally, Jackie, my nurse came in to check on me and I made a joke about the hot flash. She said "Well, it is warm in here." WHAT? No one ever says that about my room/house/general location. It should be cold, like the depths of Davy Jones' Locker.

Someone had raised the thermostat to 90!

Ninety!

I was roasting alive. Jackie adjusted it and the life began to return to my body.

Now find this evildoer........my money is on the phlebotomist.

Feeling Lucky? Feel Like Paying It Forward?

Everyone keeps asking what I need. But as I've been blogging, I am being well taken care of. So why don't you take a look at this story and see what you can do.
Any help is great -
blog it,
tweet it,
email it,
send something,
send prayers.....
all of the above!

From Cassie Fiano - Marine returns from Afghanistan – two days later, his house burns down

Thank You Lucien!

This came to me this morning after a delay. Seems the secretary didn't know who "Maggie" was. But Dr. Kim on my team knows about the blog.

It came with a lovely card wishing me well.

Grace stole the mouse!

Thank you Lucien. Thank you Burdicks. The nurses love you too.

I tell you......there's nothing like a Sailor to raise my spirits.

Still Here

Yesterday was Pitchers and Catchers..........

Roah-a-the-Crowd.......Crack-A-Bat......

My Happy Face Is Broken

So many people are being so nice and supportive. My family. My friends. People in this hospital. My friends online.

But this is harder than Cytoxan. I know it will pass, but right this minute, all alone. It's just so hard.

I know what I am experiencing is small potatoes. But it doesn't feel this way here alone in my hospital room.

I am weak and nauseous. I am having trouble swallowing from esophageal mucositis. It will get worse in the next few days.

All I have done is sleep. Today I couldn't even manage to shower. I washed what body parts I could standing in front of the sink, making a big mess.

My teeth are brushed. And I have saltines. I am going to try to sleep through more of this. My counts have to drop and come back up. It's the process.

But I wish it wasn't so late so I could call my Dad and listen to him tell me it will be better soon.

The How/Why Questions

I have questions about tomorrow's transplant as I plan my Thursday. You see it will likely start around 10am and I need to know what kind of shape I will be in. 10am is the start time for a DoD Bloggers Roundtable. Well I explain it to people who aren't familiar as a conference call with a Navy Captain and a USMC Colonel. No one asks....but you can see on their faces "How....why?"

Let's start with the fact that I have never been in the military. My Navy connections before blogging were tenuous at best. My Dad served 4 years before I was born. I spent many happy afternoons running the decks of Old Ironsides. I am a huge fan of John Wayne in the movie "In Harm's Way". And of course.....there is the Favorite Naval Consort. Although I met him in a non-Navy way, the blogging came about as an effort to learn more about the Navy in order to remain a bright shiny object in his orbit. And it has worked magnificently.

Blogging led to some wonderful Internet connections and some of my dearest friends. One of those connections was Jack Holt and his Department of Defense Bloggers' Rountables. And one of those friends is Lt Jennifer Cragg, USN.

The Navy's participation in these calls is due to forward thinking Sailors, officers and enlisted who see the value in a two way communication with the general public through social media. There are some who are missing this boat. But not any of my friends at CHINFO. Certainly Rear Admiral Moynihan sees reaching out to bloggers, twitterers (is that a word), etc. as a positive. Some, like my friend Admiral Harvey jump right in and blog themselves.

Anytime something goes wrong, you can count on certain MSM outlets and certain bloggers to cover the story. Especially if there is anything lurid or comical involved. But the positive stories? Well sometimes they need a little push getting out there. Also, there are non-military people who have questions and no idea where to go for their answers. Many of them, like me, turn to blogs. This is how to get some of the non-sexy stories on recruiting and ongoing operations/military operations and family support and how your tax dollars are spent.

My interactions with CHINFO and the DOD social media people have definitely been give and take. They have been a valuable resource to me and I hope that I in turn have been a good resource for my readers and Twitter followers.

So the answer to the "How? Why?" is simply this; I expressed an interest; I participated in a positive way (this is not to say that I always agree, but I am always fair & polite); and I pass along my info.

Day 3 of My Time In Stir

My Dad and my brother Frankie came in to see me this morning. Frankie wasn't on the official list.....but I needed him to bring me water and popsicles, lol! The hospital kitchen sent up Rockets....red/cherry - ok.....white/lemon - yum.....blue/raspberry - ick. So I wanted my favorite popsicle. Got any guesses? You know the Townie chick is gonna want a Hoodsie Pop. The Hood Plant was in Charlestown. So which flavor? Root Beer. Which is funny, because I don't drink root beer very often. Certainly not as often as my friend Trish. She gets it in every restaurant that serves it. So Frankie showed up with them this morning. He actually brought the whole bag and we sorted out the ones I wanted. The freezer in the room is very small. The tech put the rest in the unit freezer. She said that she would tag them with my name. I told her not to bother. I am not going to have a raspberry craving in the middle of the night. Plus Jen is bringing me Italian Ice. Popsicles and Italian Ice are highly recommended to avoid mouth sores and mucositis. Heaven knows I am alllllll about preventing pain.

They were joking about my "prison cell" and it's size. This is a suite and bigger than a regular hospital room. I've actually been in smaller hotel rooms. My Dad asked how I was doing and I said I was fine. Frankie said that when they came back in a few days there would be marks on the wall to indicate the days I had served.

When my team came in this morning I had just read a note from my son Frankie and I was a little veklempt. They looked concerned, I told them I was fine and explained the note. So they went back to their cheeriness. They are funny and joke about trying to be entertaining. Dr. Klein, my attending, asked if I was blogging this. LOL! It's the biggest event happening in the Maggie-centric universe, isn't it?

Between this and Facebook, I could never be lonely. That was Judith's (my social worker) biggest fear with my short visitor list.

They've taken away my toothbrush.....Am I on suicide watch? Is this cruelty by the screws? LOL! No, they want me using Toothettes little sponges to prevent any possible gum bleeding when my platelets drop.

Ok, so I've completed my two Melphalan doses and tomorrow they give me back my stem cells, that's considered to be Day 0. I'm expected to go downhill - counts drop, temps rise - until I hit a nadir on Day 7.

Thanks for keeping me company.

Today Is Mustard Gas

Well, not really, it's Melphalan, which is related to mustard gas. So was Cytoxan.

I ate too much at breakfast. Generally I have toast and juice. Today I had an omlet and home fries and an english muffin. So there was a little stomach ache. Plus I am a little dizzy from the pre-chemo drugs - benadryl, etc.

Grace came by and hung out and harrassed me. She wanted me to do something a certain way. So did my Dad. I relented. She was beside herself. Her head is getting big.

Oh The Pain! (to quote Dr. Smith)

(Note - sorry about not blogging, I've been trying to do everything to get ready for my hospital stay)

It was a knife wound to the heart (my teeny-tiny heart)!

Grace was right. You know how it pains me to say that. It hurts my fingers to type the words.

Today on the first day of my incarceration here in Tufts/NEMC they put in my line/port. Now this is the second time I have had this sort of procedure. Last time I was taken into Outpatient Surgery and was there for about four hours. No one could come in with me. So when Grace said she was taking the day off to come with me, I told her that was silly. I told her that I would take a cab from my parents house to be there at 7:30 am as ordered. Then she could join me around noon with my bags and laptop (the all important connection to the outside world!). Grace was insistant and unfortunately my mother told me to just go along, it was Grace's time to waste. Then when we told my Dad about going to Grace's to watch the SuperBowl, he suggested I just stay over and let Grace take me here this morning.

Well? What could I do? I went along.

Last night was fun. I made blueberry cobbler and some appetizers - fried stuffed wonton and chinese sausage. Grace had fudge and nuts and Coke. So I was very happy. And the game was good too, lol.

Dave drove Grace and I into Boston and we were here bright and early. I was called in for my procedure and turned to Grace to say goodbye when the nurse said "Your friend can come." Grace laughed. I introduced my sister and gave Grace the eyebrow. Turns out Grace got to stay with me for everything except the hour I was having the line placed. And it only took that long because they couldn't do the subcutaneous vein placement. The vein was too deep and too close to my lung. So once again it's in my neck, but not as high. We discussed it later with Denise and I was explaining that they were trying to push some flesh down and away while they used the ultrasound near my clavicle. Grace joked that they couldn't get there because I am too well endowed.

During and after the procedure, Jane, the nurse stressed that I should go have a big salad before heading up to the Bone Marrow Transplant Unit since I have to go back on the low bacteria diet.

Then Grace and I headed up to check-in to the unit. My room is one of two suites on the floor. Two regular chairs, a Geri chair and a couch that folds out. Kind of ironic since I have restricted visitors to my father and my two sisters and my brother. LOL! Well my few visitors will be comfortable! But I am not changing my mind, I do not want people to see me like this.

Oh and can I tell you that last night I FINALLY got an honesst reaction to my head??? Last Thursday we were in Dr. Miller's office and one by one Denise, Kate and Dr. Miller came into the room and said how great my hair looked. I called BS on each of them in turn. Turns out that I do not have a head that was meant to be bald.. Kinda squarish and big. I look like the stereotype of a brutish lesbian. Are the people coming into that office such fragile flowers that they must be bolstered with false platitudes?

I am no fragile flower. I know it looks bad, but I know it's temporary.

Anyway, last night on the way to Grace's, Jen and I were talking about my hair and wigs and scarves. Jen had not seen it at this point. She was chiding me that it couldn't be that bad. Perhaps some gel? Or mousse? I just laughed. Once we were settled in Grace's house I removed my cap.

"Oh. Yes. Well." We all laughed. Now that was refreshing.

So, here I am, for the next 21 to 28 days.

Something To Make Me Feel Better!

Thank you Tom & Bonnie!

It's Done

I would have taken a picture of all the hair, etc....but I think I was a little in shock. Besides, you know how fast my father cleans things up.

It was just too much to go though anymore. At lunch I had to pick a hair off of the tablecloth....gag me!

So there was polling. I counted everyone who voted on Facebook. The majority being "Shave it now"

I sent texts to the inner circle. Grace, my mother, Jennifer, Debbie and Frankie were "Wait/Do what you want". Frankie actually said "Just wait until I am gone" LOL. Genevieve and the favorite Naval consort were "Shave it now", but made up for being the minority by being pushy. They are both type A/leaders.

I wanted it gone, but I was still stuck on the "What if it stops falling out again" idea. After all, it did stop once. And I am so non-compliant with what they expect to happen. Plus, those who know me will tell you - I suck at the 50/50 questions.

But in the end, hating the general messiness won out.

I am not completely bald, my Dad buzzed it with a half inch tool. The FNC told me not to do it myself because of my tremor.....of course, where do you think the tremor came from? I could feel him shaking, lol.

But it's done and now I can feel like when I swiffer the floor and vacuum the carpet it will stay clean for more than a few minutes.

My Hair Just Woke Me Up

It was falling out.

Then it all but stopped.

Now it's falling out again. Faster than ever.

I woke up because my pillow was covered in it and it was tickling my nose. So I just cleaned my pillow and bed with masking tape.

How can I have this much hair? How can there be any left?

I am wide awake. Looks like there will be another episode of Grey's Anatomy viewed before I can go to sleep.

I know this is small potatoes. I said that in an email to Denise, the transplant coordinator. But it's throwing me off my game here. I was making progress, very minor progress, but now I feel like I have rolled back to the bottom of the hill and have to start climbing again.

The favorite Naval consort called a few hours ago. I was trying to explain that I understood feeling crappy after Cytoxan and after the collection, but why this week? He told me that I have to let go. I have to stop expecting progress until after my hospitalization. That I know why I feel crappy.

He also seconded my father's opinion that I can not go to the airport with Frankie.

Rat bastid.

Moot point anyway, since the snow tomorrow and Wednesday will cancel his flight. Who knows what will happen with rescheduling.

Anyway, I wish I was just bald already.

Timing Is Everything, Mr. Hornfischer

So every Naval history buff loves James Hornfischer's "Last Stand of the TinCan Sailors". I am no exception. He has a new book coming out "Neptune's Inferno".
I got an email from him about it last month. So I knew there would be a book tour. And there is. I knew there would be a Boston stop. And there is. Mr. Hornfischer's parents live in Framingham. So it only makes sense that he is appearing at the Framingham Barnes and Nobles.

Great. Right? I will go and meet him and get my book autographed.

No, it's February 8th. The day after I go into Tufts/NEMC for my stem cell transplant.

I sent a letter of protest. You know I am not kidding. It's a Maggie-centric world.

Anyway, if you are in Framingham, you should go and hear him speak. I am sure it will be worth the trip.

MIDRATs

CDR Salamander tells us that bologna sandwiches are the quintessential MIDRAT. But come on...............Doesn't this homemade whoopie pie with strawberries look much more appetizing?

I'm listening to Captain Alexander Martin, USMC - the leader of the team that took back The Magellan Star on MIDRATs Blog Talk Radio right now.

I'm In Trouble/Some Things Never Change

So Thursday Frankie came up and we had a visit. He took me on my errands and we got to talk. It was great, but I was pretty wiped out. Then the favorite Naval Consort called and kept me up.

So Friday I was pretty tired. But there was nothing on the schedule except pizza with my sisters and my cousin Chrissie. And they were coming to me, so no big deal, right? Well this morning I was wiped out. Although it was totally worth it. Chrissie is screamingly funny. She knows everyone in Charlestown and kept us entertained all evening with the latest gossip.

I thought I was hiding this being tired stuff pretty well, but apparently not.

Most of us were here today for frankie's birthday party....you know, the one I forgot to plan, so my father and Grace stepped in. We were going to have it at Grace's in case I hadn't recovered enough to attend, but I had plenty of white blood cells to spare so I am off restriction.

Frankie and I were talking about his upcoming move to Virginia. He flies out on Wednesday. I wanted to go over to the airport with him. My father interjected, "Absolutely not!"

So I laughed. I thought he was teasing. He is always forbidding me to do things. But it's in jest. Well not today. When we were alone in the kitchen he told me how I was causing my mother and him to worry about all my gallivanting.

So? What do I do?

And Jen left today mad at us. Well, not really, but I am on movie restriction again. It's Kanani's fault. She sent me that Richard Burton/Elizabeth Taylor book. I read it and I have been watching Elizabeth Taylor movies. Today was Butterfield 8. Jen was so mad at the end....I got yelled at.

It's OK

I'm just tired. Frankie came to visit Thursday. We ran errands, etc. And last night my cousin Chrissie, my sister Grace & my goddaughter Debbie were here. I don't have much energy...and they used it all, lol. But I am ok.

I Am Banned By Michael Yon

Took long enough....jeez! Anyway, I did it with logic. I know, I was surprised too! So now I am proudly part of a list that includes people I admire like -

Beth Donovan
Beer Girl - Maryann
Carrie Costantini
Chuck Ziegenfuss
Mrsg- N-Greyhawk
Troy Steward
CJ Grisham
War on Terror News
and many others!

Talk about a VIP list....and I did it with 8.27 million stem cells tied behind my back......lol. Seriously, the people listed above write stuff more substantive than anything you will read here and I am honored to be in their company.

I am going back to sleep now.

8.27 Million & A Present!

They needed 5 million and collected for five hours. Five excruciating hours. The last one of which I had to go to the bathroom. I just gritted my teeth because I wasn't going to use a bedpan.

And I wore my nifty new wool cap that Sarah from "Trying To Grok" sent me.

Why was it excruciating? No Wi-Fi. Seriously? There is Wi-Fi in the infusion room. There is Wi-Fi in the inpatient floor. But not in the Neely Infusion Center? So I beefed to everyone who came in. You know the rules "When Maggie's unhappy...she's seldom unhappy alone."

Seriously, it was fine. Grace was with me the whole time and we has lots of laughs with Denise, my transplant coordinator and the staff, Ron, Paula, Kay and Pat. There were visits from Kate, my NP and Dr. Miller.

I didn't need blood products, the catheter is out, I got Starbucks vanilla chai tea. Really, you couldn't ask for more......except for Wi-Fi.

We took the T home and Grace was nervous about anything "happening to me on her watch". So she kept fussing. She wouldn't let me carry my bag. She made my wear my nifty new wool cap and giant pink mittens even though it wasn't that cold. Then in the T station....she buttoned my effin' coat...people probably thought I was a mentally handicapped adult. I was fine on the train but we climbed the stairs out of Haymarket instead of looking for the escalator and there was no seat on the "Bunker Bus" aka the Route 93/Bunker Hill St. bus. Grace said she could see I was struggling and she was scanning the people with seats to see who she was going to approach and ask them to get up, lol. But it ended up ok. She even bought me a Mega Millions ticket for tonight.

Alright I am in bed and successful and out of their clutches until February 7th. That's when I will be admitted for the next part.

Midnight Milk & Cookies

Ok, well it's only a little after 2300 hours....so it's not midnight and I have to use teh ghey straw because my neck doesn't bend in a "drink from the carton" angle......but still fun.I was asleep by 8 pm. Out like a light! The favorite Naval Consort called for an update and I am going back to sleep in a few minutes, but..........I couldn't resist.

Vascular Catheter Day

My parents bundled me up like a two year old, giant pink mittens instead of my stylish suede gloves. Hat AND hoodie. Then my Dad made me wait in the house until the car was all warmed up. So I walked 50 feet in the frigid temps. He dropped me off at Tufts/NEMC. Another 10 foot walk. A woman in the elevator pointed out that my sneaker was untied. I told her not to worry, if I fell I would bounce right back up in my StayPuft marshmallow layers. I was fifteen minutes early....no credit to me, lol.

So Friday, my white blood cell count was .6. Normal range is approximately 4,500 to 11,000. Then there was the bone pain over the weekend and I made the comment that for this much pain......there better be a lot of white blood cells on Monday. Well, there were - 19,000.

This means - no more low bacteria diet. No more mask and gloves. And later this week......a pedicure!

Then it was down for the vascular catheter. Very pleasant people, very pleasant meds. "We're going to tunnel through you interior jugular vein...." and then all I heard was the ocean.

This is what's sticking out of my neck, my mother can't look at me.They wheeled me back to the Neeley Infusion Center where we pow-wow-ed with Kate, my nurse practitioner, Denise, my transplant co-ordinator, Dr. Miller and one of the infusion nurses.

Tomorrow is stem cell collection day. I look like Frankenstein.

Another Sign Of My Maturity....

....or not.

Every morning, I go downstairs and have toast. I don't want the toast. But I know I have to eat something. Plus once in a great while, it stimulates actual hunger.

Now this morning I woke up hungry.

Wow! How come?

Because last night at midnight I was explessly forbidden to eat or drink anything, lol.

So of course, Miss Mature wants something.

Off to get my catheter inserted. It takes a half hour, but I will be there from 9:30 am until about 1 pm. It's considered outpatient surgery. Grace asked me for the hundreth time if I wanted her to go with me. I said Grace, they won't let you in.....she said, but you would know I was on the other side of the door. I explained that after they administer the Fentanyl and Versed.....no I won't.

Finally, I am getting something pierced!

You know, I think my Dad fibbed when he woke me. He said it was 8 am. But I am showered and dressed and blogging. There is no way I did that this fast.

Hmmmmm.

Another Voice From The Past....

....and I am reminded that it is better to be lucky than good. And that being lucky isn't the same as being strong.

I have no idea if I am strong. You don't know if I am either. But I am damn sure lucky! I have led a charmed life. This cancer is by far the worst thing that's ever happened to me. It could have been disastrous. But it's not. When this happened so many people have rushed in to cushion the blow. I am very grateful. But we will never know what I would have done. Don't get me wrong, I am grateful I don't have to find out. But in talking to family members lately there is someone who was not so lucky & who squandered her subsequent "opportunities".

But squandering opportunities after the damage is done .........doesn't that just mean you aren't strong?
So she wasn't lucky.......and she wasn't strong.

My father doesn't get it. He had a somewhat tough childhood and prides himself on having pulled himself up. He joined the Navy. He did well there. He came back and worked two sometimes three jobs. He took full advantage of the GI bill. He lived carefully and invested wisely. He was smart and tough. His best decision was to marry my mother since she turned out to be his greatest ally. He took care of his family and clearly, he continues to do so.

So when life knocks someone down, my father expects them to get back up swinging. And if you try, he tries. But if don't, if you fail. Well. Or worse, if you blame others. Well.

People tell me I am strong. But that's complete rubbish. I am just a leaf bobbing on the surface, swept downstream by currents beyond my control.

But I am a lucky leaf. And it's good to be lucky. And to this voice from my past, all I can say is I am so so sorry that you weren't lucky.

My Crazy Nightmares

So I thought it was the medication.....but no.

No, it was my father!!!

That's right all you fans of my primary caregiver.....he was cooking my brain with the vaporizer! Last night I woke up from yet another sweat soaked, terror filled dream and realized that I had to unplug the vaporizer.

After that....no more bad dreams.Grace brought over a cool mist vaporizer today. She, Deb and Jen showed up for one of my father's favorite meals, a boiled dinner. I don't do cabbage or turnip plus they are not Atkins friendly veggies, so we got broccoli and green beans in addition to the traditional.

On another note, I was and continue to be high as a kite because we have hit the point in treatment where the pain from Neulasta had me in tears. It is greater than any pain I have ever experienced in my life. Car accidents. Childbirth. Nothing was like this.

Neulasta stimulates your white blood cells in your bone marrow. How the infusion room nurse explained it to me was that all these white blood cells are trying to out of the marrow at once. "Picture a bunch of people all trying to get through one doorway into a party. They're banging against each other." She said it would range from a minor flu-ish feeling to needing oxycodone to needing to come in and get morphine.

Morphine?

So Tuesday I had a minor ache in my left thighbone. They had explained it would most likely be in the femur, pelvis, sternum and rarely the face. Now the face one really scares me because I have had the face/bone pain thing a few times. If you have a pain somewhere, often you can alleviate it with a body position change. Not face pain. But anyway, this was just an ache in my femur. Fine. Then Wednesday it was a little worse, but still just minor and still just in the thigh. On Thursday it was gone. So there I am thinking I have lucked out. No.

After Fringe, I was getting ready for bed and I felt an ache in my sternum. I thought "No big deal." But then I remembered I had already taken my night time meds, which include 10 mg of oxycodone. I shouldn't have been feeling anything. And it grew more painful. Then I could feel it in my pelvis. So I took another pill. As soon as I felt a twinge in my face....I popped a third. I am guilt ridden about using these drugs. I worry about it to the point where Kate has given me a mantra "You're drug dependent, not drug addicted". But I didn't care last night. It pulses and feels like someone is reaching inside you and is crushing your bones.

Later, I will sneak down and get a glass of milk and some of the chocolate-chip cookies my Dad baked this morning.

Fringe....

....and popcorn.....

.....and Coke in a glass of ice......

.....and Hersheyettes......

.....and oxy, lol!

I've lost 12 pounds since last Friday. Ummm....yeah, there won't be any additional weight loss tonight!

My father has been following me around with food all day. Toast when I woke; cheerios with a fresh banana when I returned from the hospital; chicken and french fries with ketchup for dinner. The low bacteria diet severely restricts fresh fruit, but well scrubbed bananas and oranges are allowed. He's slicing it into my cereal and he explains that the banana is safe because he scrubbed it with Spic-n-Span.....I almost spit out the cheerios, lol. I told Jen and she was yelling that they probably don't even make Spic-n-Span any more and certainly not the powdered stuff he favors.

I got ketchup with the fries. Mustard and relish with the hot dog. No choices. He serves, you get the condiments he favors.

So we have set Frankie's party for next Saturday because there is a chance my white blood cell count would be high enough for me to attend.

I love "Fringe" and so does my father. But I had to chase him out of the room because he likes to watch a whole season at once and tonight would ruin the story for him.

The "Observers" from "Fringe" are like watching the videos everyone is making with their computers now. You know, like this one from The Armorer.

23 Years Ago at 1833

My baby Frankie was born.

I wrote about him here and probably only his girlfriend Brit would be interested in reading the details.

Happy Birthday Spankie-Frankie!

You Think I Am Kidding About These Movies

It's like a video store here. These two display racks spin and there are just as many on the other side. Then there is a whole book case full of the on the other side of the room.

I'm about to start "No Country For Old Men". I've already watched "Flags of Our Fathers" and "Changing Lanes"

We went in this morning for blood work. No transfusions needed. My platelets and red blood cells are low, but where they want them. My white blood cell count is a little too low, but they are hoping for improvement over the weekend......0.6. So infection is still a real danger.

They were happy to supply the other nausea medication when I explained that I think the current one is giving me crazy, feverish nightmares. I had ondansetron (Zofran) from Saturday to Tuesday. Then I ran out and switched to prochlorperazine (Compazine). They give you both because not everyone responds to both, but you should respond to one or the other. Well starting Tuesday night I began having bad dreams. Wednesday night I almost woke up screaming. I thought it was just the hot house, but last night was just as bad. I was soooooo upset and in the dream my ex John and all three of his sons (my Tommy and Frankie and his and Michelle's Kevin) came to my rescue. But none of the ages matched up. John still had his 1981 hair and Tommy and Frankie were little boys like Kevin is now. But whatever.....a rescue is a rescue! Better than waking up screaming.

So now I am here and the hardest thing is picking a movie.

And to My Marine.....no, he doesn't have "Stalingrad".

The bone pain disappeared yesterday, but Denise warned it would likely be back. And it is! LOL! So I am high while I watch these movies.

Stuff You Can't Get On DirectTV

So my Dad has a bazillion channels on his big screen HDTVs. But some of the best stuff, some of the stuff I have the most fun with, comes through this laptop the Ripley family gave me last year.

This evening I watched ADM Harvey's remarks at the Surface Navy Association Symposium last week. Between the weather and the accelerated STC schedule, there was no chance for me to sneak down to DC for this. I'm not a member and I was going to have to crash....well... at this point, even I will admit, it's not crashing anymore. But, like I said, once the schedule was set, the chance of nipping down to DC for a Tuesday through Thursday symposium evaporated.

But thanks to SNA and SWOnet, I didn't miss out on ADM Harvey's really great remarks. I say that as a civilian who will never command anyone (I rule the Navy blogosphere, but that's different). If you don't get that this is a man who has loves his life in the Navy and is giving it the best a man has to give....well then you weren't listening. As a citizen and a taxpayer, I also thank Mrs. Harvey who gets a very appropriate shout-out.

You can watch by clicking this link. It may give you a Microsoft security message "There is a problem with this website's security certificate" , but choose "Continue to this website (not recommended)". Don't know what that's about, but it's SWOnet and it's safe.

It takes you to a page titled -
SNA National Symposium
Hyatt Regency Hotel, Crystal City, VA - January 11-13, 2011
"SURFACE NAVAL FORCES: Relevant Capabilities For A Challenging Future

The scroll down and ADM Harvey's speech is the second choice.

The photo array can be viewed here. I got the pics from ADM Harvey's blog.

I envy those who attended...but it was really meant for them anyway, lol! But fair warning SNA, I'm going next year.....you might as well just let me in!

Continuing On A Theme.....

If one has high dose Cytoxan on a Friday, it is expected that within a few days they will begin a week long decline to their nadir on the following Friday.

Today I feel better than yesterday.

That's me, bucking the trend.

I've been up since just before 0900. Had toast, showered, made my bed. Then my father put on "The Bedford Incident" for me. He told me it wouldn't become a favorite.....he was right. But still, it was a good movie. Love Richard Widmark. It was a thoughtful movie, but I don't think they adequately explained why Widmark's character acts as he does. At least I didn't get it.

In the middle of the movie he brought me a chicken hot dog. Now let me say, I am not one for substitutes. If I ask for chocolate, I don't want carob. If I ask for turkey, I don't want tofu. But I must say.....in a bun with mustard and relish and a few potato chips.....yum.

And I am still awake.

So I think I will pull up Tweetdeck and screw around some!

And The Award For Worst Mother Of The Year...

UPDATE>>>Let me be clear, Frankie didn't complain. He asked me when it was so he could keep with my schedule. I am the one who sets the time. Once he realized that I had forgotten, he quickly said he didn't need a party. LOL! Don't get mad at Frankie! The favorite Naval Consort yelled at me for making Frankie feel bad, he knows us enough to know I was wallowing and Frankie was not the problem.

...goes to.......ME!

My sisters and my brother and I have nine children. We celebrate each birthday, some are combined, some are singles. My son Frankie is usually a single because he is the only January birthday. I usually call Grace, Jen, and Frank and we pick a date. Something convenient.

It's not any big thing. Cake, probably pizza. Or Grace makes meatballs. Or my Dad gets coldcuts. It's just an excuse to get together.

So here I am.....wah, wah....cancer....chemo...me....poor me.

Frankie calls me to see if he can come tomorrow to visit. I have told them they have to check in case it's bad. I don't want them to see me looking bad.

And we decide, yes, tomorrow is good. Then he says, "When is my party?"

I have just about stopped crying and feeling bad for myself.

My Darling Chief Sends Me PRESENTS!!!!

I promise to flesh this post out, but I used all my energy opening the box, lol.

This Took An Hour!

To assemble and consume.

On the bright side.....I am showered.

In between catnaps I am reading about the Graf business because of this post and it's comments. My Marine has sent some material, but the most fascinating commentary is found in two blogs.

Susan Katz Keating

I Like The Cut Of His Jib

Changing of Bed Linen #Fail

I got up two hours ago, shaky but ok. My nightstand was all cleared of half drunk water bottles and crumpled napkins and a Dove chocolate candy wrapper.

The clothes I had dropped on the floor when I put on my nightgown at 10 pm last night, were washed, dried and folded on the chair.

I went to the bathroom and brushed my teeth. It was clear that he had just finished scrubbing the bathroom down and changing all the towels. I came out and he gave me cough drops and announced that after the current load of laundry was finished, he was washing my sheets. I managed to change my own sheets, whew!

I got chased into the closet by the swiffer, he had already vacuumed.

There were pancakes waiting downstairs, I had one. Even my mother ate two!

I took all the morning pills.

But I couldn't manage a shower. I am back in bed on the clean sheets. #Fail

A Day Of Ups And Downs

My father just walked by "I don't want to talk about it....and don't call your sister Grace!"

It is a mournful time in New England. I can not turn on Facebook because I can not bear to see Mark Seavey's pain.

I did make it to the 11 am Mass and it was wonderful. Of course, my parents weren't happy. I am supposed to be resting and avoiding crowds. I laughed, because sadly enough, Mass isn't all that crowded anymore. Anyway, I came back and took a 2 and a half hour nap.

They woke me for dinner because everything had to be served, eaten, cleared, cleaned and put away before kick off.

I had planned on keeping one eye on Midrats, but this internet connection I am stealing off someone's unsecured network was very low during the broadcast.

Oh well, it was good to make it to Mass. I love Father Mahoney.

I Feel Like I Am Looking Over the Edge Of Cliff

....waiting for someone to run at my back, full tilt, arms extended, and push me off.

I feel pretty good, better than last week. Which is bizarre. I walked upstairs to the 3rd floor 4 times today - no problem. I'm not saying I am Speedy Gonzalez, after all I have been up since 7:30 am trying to make 9 am Mass....#FAIL. And now I have to hope I don't poop out before 11 am Mass. I am up, my bed is made, I am showered, my hair is blowdryed (the down side of the new haircut, it must be blowdryed.). I started the laundry. I took all the morning pills and marked them down along with my temp. I straighted out my nightstand and some stuff in the room. Now I am here in the blog and eating blueberry flax hot cereal - Yum!

They told me that I would start to feel the effects of Cytoxan sometime tonight or tomorrow. They told me that the shot I got yesterday, Neulasta to stimulate my white blood cell will likely begin to cause pain Monday. And then it's down hill to Friday, my nadir.

But for right now....I'm just waiting here at the top, feeling pretty good.

Organization

My father took all my pills and he is typing up a chart for me.

He has already straightened out the nightstand and moved my hairbrush and lipstick out of my reach. He explained that I don't need to brush my hair now. Then he kiddingly started to brush my hair.

He called down to my mother and ordered me two slices of toast with butter and the crusts cut off. When I protested that I like crust, he explained the crust might irritate my mouth.

Cytoxan

Took a cab over to Tufts/NEMC for my day of high dose Cytoxan. This is the first step in my stem cell transplant. This will stimulate my Tcells. Think of it as pruning a bush to make it flower. The infusion room nurses were talking about it with excitement. It seems so strange. I of course have a different perspective, but I did understand. They are happy because they have their eyes on the long term goal, remission. I was still hoping for a last minute reprieve because I woke up with a head cold. I was thinking the cold might delay stuff, but no, we went ahead.

Today I had Robin and after doing the initial blood work, she started the IV and some benedryl. I zonked right out. Next thing I knew Jen was there with a tea. This was good for two reasons, first I am a fan of the Dunkin Donuts tea and also I have to drink lots of fluids because of the Cytoxan.

So I slept, I drank, I visited the restroom.

There was lunch and I ate half a turkey sandwich. Then Denise, the transplant coordinator showed up. We went over more stuff. She took Jen down to the pharmacy to pick up other stuff I will need, anti-biotics, nausea meds, etc. I think we are wearing her down on the "you can't shower after the transplant" front. I told her that other than being really tired and sluggish, I felt fine. She knocked on wood and laughed at me. Then she explained that was normal. It would come on in the next few days and next Friday would be the lowest point.

Grace showed just as Denise was finishing up.

At one point Robin held up something plastic. I didn't have my glasses on, it looked like a sombrero. It was to measure my "output" on my next bathroom trip. Apparently, I made a good showing because I only had to do that once.

Then Kate, my nurses practitioner came in. She took us on a tour of the transplant unit.

Jen took off before the valet closed at 4 and there was more sleeping.

I started to feel nauseous, but it was just hunger. I forced myself to finish the second half of the turkey sandwich. Blech! Jen had thrown away the mayo, because she is ANTI-MAYO. Dry as the Sahara.

Finally it was over and my brother Frankie & my Dad came and got us.

There were two shots of Mesna to take tonight. It is to protect my bladder from hemorrhagic cystitis. There's two words that will grab your attention. Everyone said it smelled horrid and was vile. The directions recommend diluting it with juice, but the consensus of those in the room was to hold my nose and take it like a shot with a ginger ale chaser.

The first was at 6:45 pm and it wasn't that bad. The next is at 10:45 pm. If I can't keep it down I have to go back to the ER and have it administered via IV. One down, one to go.

So that's my report. Day one - ehhh. Not as bad as I thought, but no day the beach.

Decisions Were Made!

I was dithering, unable to make a decision between steak and chicken parm. A last meal before a long span where food might not taste good and/or I don't feel like eating, is a major issue for a "foodie" like me.

Then I thought....why choose? If I got Jennifer, Pat and Bette to go with me to Paparazzi in Hanover, I could have both and more. Jen is highly likely to order one or the other....then I will order whichever she doesn't pick.

I had a quarter serving of their melanzana fritta and passed the rest to Pat. Then I stole a few mouthfuls of Pat's insalata di campo. Bette shared her carpaccio. I didn't need whole servings, I need just a little bit of each. Or as Bette said, I wanted to graze, lol.

Then just one of the beautiful pieces of filetto balsamico, medium rare and few bites of Jen's pollo alla parmigiana. She actually wanted the veal......but she's a good egg!

Brilliant!

My Last Meal

There may be a delay of my start on Cytoxan day after tomorrow. It's a thorny insurance problem that my team is working to resolve.

But let's proceed as though it was going to begin on Friday for the purposes of this post.

I have always been one to focus on "The Last Meal", but it's usually a last meal before going on Atkins for a while. But this time it's because I will be sick. From everything I have read, no matter how mild or severe my nausea & vomiting, I won't want to eat. I will be too tired and food won't taste good or the same.

I have been very tired lately and haven't been eating much......try this diet strategy - put your bedroom on the 3rd floor at the front of the house & put the food in the kitchen on the 1st floor at the back of the house. Now suit up in this and see how much you eat! Although, when I do eat, food still tastes good! I loved the Malasada Party this past Sunday with my brother's in-laws.

So starting Friday, I will be tired and food won't be appealing.

So what am I going to eat for dinner Thursday night?

I Kinda Sorta Chickened Out

Today was supposed to be "Cut It All Off" or "Shave It All Off" Day.

But when I got there, I couldn't quite do it. Part of it is my mother saying "Don't do anything drastic, wait and see what happens." Part of it is vanity. Grace took me to her hairdresser in Arlington and introduced me to her very nice hairdresser, Kathy. So Kathy only cut it to my ears. The back is very short, shorter than the sides. I love my regular hairdresser, Sue at Personal Best (if you click on the link, it's a picture of George cutting hair, but you can see Sue in the upper right hand corner). But I have known her since she was a teenager. She has been cutting my hair for about six years. If I had gone there, she would have cried....and then I would have cried.

It accomplished what I need for now. I won't be clogging the drain so much and there won't be so much to clean up when I shed. Plus, if Cytoxan goes like the literature indicates it may....I won't need anyone to hold my hair back while I retch.

And there was the pressure that my bald head would not be as sexy as My Marine's bald head.

1850 1/11/11 - The Favorite Naval Consort popped up. I explained that it was slightly longer then a regular boys haircut.....he said his was still shorter (his hair is not as long as my brother Frank's five o'clock shadow).....I told him that I would likely win the race unless my mother was right and I was the exception to the rule.....he said "You have been the exception all along " That's why he's the Favorite Naval Consort!

I Am Miss Mature!

Last night, my mother and I were watching something on TV and a commercial came on for "Hoarders" or something like it. My mother says that could never happen with her. I said "No kidding! I'd like to see you try!" If we leave one thing out of place, my father is right there to move it or question us. Then, almost as if he knew it was his cue, he came into the room. He looked at an envelope that was on the ottoman next to my feet. "Hmmm, what is this?" I laughed and said I was using it as a bookmark, it would leave with me.

So today I had a few appointments and a lot of walking - a lot for me anyway. So when I got back to the house I went up to my room to rest. I ended up falling asleep for five hours. Not a good plan. I got up and as I passed me father he starts laughing at me and tells me I will be up alllllll night!

So I go down to the kitchen to get something to eat and I note that as always, the oven mitts are in this drawer, one on top of the other. Facing the same way. Very orderly. So I make sure to put them back....upside down and backwards.

The Date Is Set

So the one question people who know about the cancer and the chemo and the SCT always ask is "When do you start?" I give some vague three week time frame.

Because of course......I don't want to do it.

Yes, yes, I know that I have to. I know that it's the best course of action. I know that other people go through worse and for less return on investment so to speak.

But I don't want to do it and I have been undermining the process. I wanted some extra time. Just a week or two.

Do some extra things.

Like brush my effin' hair.

Anyway, the original plan as set out was that it would be scheduled after Blue Cross approved it. That approval usually took two weeks. Then dates would be set. That's where I came up with the three week answer. But I was late paying my insurance, not to the point of cancellation or anything. So I told Denise to wait until I straightened it out. I told her that I would call on January 3rd to confirm everything was paid up, etc. Otherwise she would have sent it all in as soon as she had the results of the tests I did on December 20th, 21st & 22nd. Probably around the 28th. Approval coming around the 11th of January. So I pushing it out to the next week.

But I didn't call her on the 3rd. She called me on the 5th. I was at lunch and I saw the number and assumed it was another phantom call about the incorrectly scheduled infusion and let it go to voice mail. When I listened to the message later, I realized it was Denise. So I called and left her voice mail explaining everything was settled. At that point I figured I had until the 27th, you know, 3 weeks from the 6th when Denise would submit the paperwork.

No.

She called yesterday morning to tell me that she scheduled the Cytoxan for next Friday, the 14th. I asked how she could do that if Blue Cross was going to take two weeks to authorize it. She explained that she requested Blue Cross expedite the process because it was urgent. Apparently I have been shooting myself in the foot and the longer I get from the last chemo treatment - December 13th - there could be a problem? I don't know. But Denise was telling me that she told them to "run it like a fire drill". I was so shocked that it was accelerated. I didn't ask questions. I was concentrating on walking down the stairs because I was trying to leave for the Kelley rally and the stairs, up or down, are a problem. Plus I didn't want to hear what she was saying.....so I wasn't hearing what she was saying, lol. That's how I roll, baby!

Then I was standing in the dining room and she was talking about blood work, and schedules and I don't know what else. I kept saying "ok" to the point my father started mocking me, parroting "ok, ok".

The shock part was good because I relayed the message to my parents without getting upset. No tremors, no tears.

I sent texts to the Favorite Naval Consort because I knew he couldn't call. He sent back a strange message that I misinterpreted and I got mad. Mad is good, it distracts from sad and panicky.

But I leaked for the rest of the day. No weeping, just a steady blur. It started around City Square as I looked out the window and thought that the city didn't look beautiful to me. I never think that. Not in any season or any circumstance. It was a sunny winter day and I was safely bundled up. I "leaked" all through the rally, but lots of people wiped away tears caused by the winter wind or incipient colds. I "leaked" all the way back to my parents. I stayed in my room a lot.

Finally I called Grace and Jen in the evening when I could trust my voice. Then I called Frankie, my son and sent a message to my son Tom. Grace was off and running with organizational tasks, her forte. Cytoxan is an all day thing. I need a ride there and back, but my family also wants to make sure I am not alone. So my father will drop me off around 8am. My son Tommy and my sister Jen will be with me at various times in the morning. Grace will come around 3 and my brother Frank will pick us up at 5pm.

First there will be some drug to coat my bladder or kidneys, I forget. I just remember it's because Cytoxan is so damaging to them. Then an IV of Cytoxan...which is related to mustard gas. Then a break and some fluids. Then a second IV of Cytoxan. So I am there all day.

One of the most common side effects of Cytoxan is lethargy. If I become any more lethargic, I will be comatose.

The biggest laugh on me is that because I have been so lethargic, I haven't managed to really DO anything with this extra time I was trying to steal. I wanted to go to Virginia with Frankie and see my ex and his family. And go to Miami and lounge on the beach and visit friends there.

I actually had a secret plan to go to WEST 2011. But truthfully, the plane ride alone would have meant spending the next day in bed.

Rally To Support Massachusett Vet Sec Tom Kelley

So this morning....I was there....on time. The rally began at 11 am and it will go on until 5 pm. Unfortunately, I only lasted for the first 90 minutes.

But I got a chance to shake Tom's hand and wish him luck. He thanked me for attending. You've got to be kidding....THANK YOU!

By Hook Or By Crook

UPDATE - Putting this back on top of the page.

On Thursday, January 6th at 11 a.m. I will be at the Massachusetts State House.

"Protest of vet secretary’s ouster planned for inauguration"

Anyone who can be there to support Veterans' Services Secretary Tom Kelley - aka CAPT Thomas G. Kelley, USN (ret), Medal of Honor recipient - should come as well.

If you care about Massachusetts veterans, you will be there. There is no more passionate advocate for their welfare than Tom Kelley.

I am still steaming about this callous action by Gov. Patrick.

First off, there is the ridiculous idea that Tom should be replaced. Kelley took the Massachusetts Veterans' Services Department and made it a national model praised by veteran's groups locally and from coast-to-coast.

Next there is the idea that Gov Patrick doesn't need to answer to the citizenry. Taking this office "in a new direction" is not enough of a reason. It is tops in the country, so what "new direction" is there? Down?

Finally, and most galling of all, is the manner of the dismissal. They just stopped inviting Kelley to cabinet meetings. Then finally, Secretary Bigby gave Tom the lame "new direction" line.

Apparently Governor Patrick doesn't understand that good work should be rewarded.....or at least left alone.

But more importantly, he doesn't understand that when you deal with a Medal of Honor recipient, you do so with respect.

Now I know what some of you are thinking right now - "Maggie, you loathe Gov Patrick, you would find fault with him if he said the sky were blue" or "Maggie, Tom Kelley is a Sailor, you would back him no matter what". But read this Peter Gelzinis column and see it's not just me being me.

Walking back and forth to Thompson Square was tough on me today, so I guess I will have to rest up for Thursday.

Who is in charge of bailing me out of jail this week?

Something You Should Read

You know I am a Navy girl, and this link takes you to the USNI blog, but this article should be of interest to all Americans.

It's from 1999, but is very relevant today. It's author is James Webb between his time as Secretary of the Navy and US Senator. It is colored by his service as a combat Marine in Vietnam and a graduate of the US Naval Academy.

"From Our Archive: The Silence of the Admirals by James H. Webb, Jr."

I am once again reminded that there are not enough hours in the day to read everything I want to read.

An Answer, A Question, & An Objection

An answer as to who will replace CAPT Honor -


A question...or two.
How did this matter surface and why now?

An objection -
I object to everyone who says that as a woman I MUST be offended by these videos. I was not and "women" are not a single block vote. Everyone's sense of humor is different. Everyone, of every race, gender, ethnicity, etc. has their own unique sense of what is funny.

When CNN's Kathleen Parker tells me that all women are offended....I am offended. By you Kathleen. How about if I tell you how to feel? Clearly, you are offended. Profer that opinion and leave the rest of us out of it.

That said.....it was really stupid to put such jokes in a video. Stuff like this never dies. That's the biggest lesson of social media and Martin Lomasney had the answer years ago.......
"Never write when you can speak, never speak when you can nod......."

Four Tenths Of A Mile

That's all. Just 4/10s of a mile each way to go from my parent's house to Thompson Square. And I am completely wiped out!

I wasn't trying to overbook, and I had a back up plan. I figured I would walk down to the CVS, drop off my prescription to be filled.....and then, have my hair chopped off.

I have HAD IT with this hair. Every morning (& to be honest sometimes afternoon) when I make my bed, I have to take masking tape and wipe the pillow case and sheet clear of all the hair. Every morning. Then I shower and have to dredge of another fistful of hair from the drain. Next I have to masking tape my clothes.

So I decided....today is the day. I am cutting it all off.

I told my mother and she tried to get me to choose a less radical option. That's actually pretty funny since she was always making Grace and I get "pixie" haircuts. Or what our aunt Helen would refer to as "Genevieve" (complete with fake French accent) haircuts. But my mind was made up, I was cutting it all off.

So after lunch - shells, homemade meatballs, italian bread, thanks Dad - I bundle up and head off up Elm. Two plus blocks later I turn onto High and then down Woods. I am in Thompson Square. I drop off the script and head for the Fantastic Sams two doors down. It's gone. LOL! Does this mean I should heed my mother? Should I rethink the haircut?

I got a cup of tea from DD and I sit on a bench in the weak winter sunshine outside the bank. There are other hair salons in Charlestown. I am thinking of the walk back. I can at any point call my Dad...or my uncle....or Chrissie....or T.....or a bunch of people for a ride. I have a safety net. Maybe I will walk to Salon 44....after all I had my hair cut there 30 years ago.

I pulled my cell out of my pocket to see if they are open and see a missed call. It's my company's accountant. He has left a message for me to call back on the business line, so this is not a social call. He puts me on speaker when the receptionist connects me. there are four people asking me questions and they can't hear my answers because I am outside. So I step into the nearby bank vestibule and stand for 25 minutes talking to them, then the office, then NEMED, then the original party again.

Once they are done with me, I go pick up my script and head home. I walk up Woods Street and try not to think of how many times I ran up this minor hill that I can barely walk.

The hell with my hair. Everything on me hurts.

So.....My Mother Just Called Me....

....on my cell phone

.....from the first floor.

We laughed. My Dad just yells. My mother is more refined.

I got an automated call on Thursday that I had an appointment with Dr. Miller on Monday the 3rd at 1 pm. I didn't recall making it and neither did my sisters or parents. So the last thing my mother said to me last night was "Remember to call about that appointment." Well, I did and sure enough it was nothing. During my last cycle of Velcade/dex, the infusion center made my "next round appointments". When they brought me the card, I explained this was sixth and last round. So they cancelled them, but apparently something was left in the system and that triggered the alarm.

I even remembered to call Gracie. She had something to do today that was less than fun and she generously offered to cancel it and come to my appointment with me. So I called and sang into her voicemail "Nevermind Gracie.....I have nothing and you have to go to your appointment!"

Then I was puttering around here on the 3rd floor when my cell phone rang. Caller ID "Mum & Dad"??

I was giggling before I hit the button. But it makes sense. Why leave the comfort of the first floor loveseat and raise your voice.....when you can just call on the phone.