Sunday, January 30, 2011

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.


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.

Saturday, January 29, 2011

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 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.

Wednesday, January 26, 2011

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 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.

Tuesday, January 25, 2011

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.

Monday, January 24, 2011

Midnight Milk & Cookies

Ok, well it's only a little after 2300 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 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 I won't.Check Spelling

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.


Sunday, January 23, 2011

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.

Saturday, January 22, 2011

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 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.


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.

Friday, January 21, 2011


....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, 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.

Thursday, January 20, 2011

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 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 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!

Wednesday, January 19, 2011

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, 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.

Tuesday, January 18, 2011

My Darling Chief Sends Me PRESENTS!!!!

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

Monday, January 17, 2011

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

Sunday, January 16, 2011

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.

Saturday, January 15, 2011


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.

Friday, January 14, 2011


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.

Thursday, January 13, 2011

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!


Wednesday, January 12, 2011

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?

Tuesday, January 11, 2011

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!

Monday, January 10, 2011

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.

Friday, January 07, 2011

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.


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 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.

Thursday, January 06, 2011

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!

Wednesday, January 05, 2011

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.

Tuesday, January 04, 2011

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 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......."

Monday, January 03, 2011

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 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.