Sunday, October 31, 2010
So the plan was to get dressed, drive to Jen's, run some errands, rest....
And then hand out candy! I love seeing all the little kids.
Well, you know about me and plans.....
So I made it to Jen's. I ran a few of my errands. Then I picked up some chinese food. I have no idea what I ordered, but I know I ate two chicken fingers before I had to go to sleep. LOL!
I missed the Patriot's game. I missed MIDRATs - which was about a very scary thing, EMP. I missed little kids.
The only thing I didn't miss was watching "The Exorcist" with Jen. Classic!
Now it's midnight, I haven't really had any candy because food tastes funny lately. Plus I haven't had the energy.
But I think tomorrow should be good. I have run out Revlimid. Boohoo! Hehe! Not my fault! Seriously, this time it isn't. Someone make My Marine stop laughing. He's always pointing out that's my favorite excuse, but this time, it's true.
On the last day of the 3rd cycle, I pointed out all the things that needed to happen. I specifically mentioned that there needed to be a pregnancy test and a re-order of Revlimid. But that ball was dropped. When I went back for the 4th cycle, I pointed this out. I told them to do a pregnancy test and order the Rev (pregnancy tests are only good for 7 days and more time than that had expired). Then the Rev people started calling me. No test. No pills.
So the test was finally done on Thursday. So the Rev will probably ship tomorrow. Meanwhile, I am out. I took the last one last night.
See baby? Not my fault.
What does this mean? Well for one thing, Rev started out as a sleeping pill. I have been putting myself in a semi-coma for days now. I am not sure if it is getting harder and harder to fight my way to the surface each time....but that is how it feels. So part of my extreme fatigue is wearing off now. I often want to stop taking this pill. I have, on one occasion deliberately stopped taking it - this is how I had 5 extra to take during this cycle, lol.
So now, at midnight on Halloween, I am surfacing. I will go to bed soon, just to stay on a normal schedule. besides, I can't do much here. Jen is in bed and if I stay up and try to do anything, I will be disturbing her. I would run an errand to Walmart, but my car is blocked in the driveway. Besides, that would be noisy too.
So instead I will sleep and hope to wake refreshed and alert.
Friday, October 29, 2010
I got up fairly early, picked up my script, got a bowtie to share with my mother, picked up some "hen party" snacks for Grace and Deb and I. I ran into my cousin Ann Marie in Johnnie's Foodmaster. It was funny because everyone talks about how you run into everyone in Charlestown there and I was just about to check out and hadn't seen anyone. I told my parents that I was feeling cheated until I bumped into Ann Marie. But poor Ann Marie! She asked how I liked being back in my old room and I got teary-eyed. I told her it was just the drugs and not to mind me. Mostly it was, I am over last night. It is what it is.
I have so many people taking care of me, wishing me well, doing nice things for me. So many more than I would have ever imagined possible.
Anyway, I came back and scored a good parking spot - Charlestown doesn't have many non-resident spots and the rest often have time limits.
I rested and then went back down to the Mall and got my hair cut and six highlights put in. Did I tell you about the blue & purple streak #Fail in Vegas? It didn't show up in my dark hair, even though the directions said it would. So today I had six sections bleached out. My niece Debbie will put in the blue and purple on those sections. Hence the need for snacks. Grace & Debbie will be over tomorrow. So my hair will be dressed up for Halloween.
Then I got another good spot....pretty lucky huh?
My father saw an obit for a girl he was close to all his life. I guess my grandmother and aunt wanted their relationship to be more than it was. He said she was at his going away party that the family threw when he left for the Navy and that his mother invited her to dinner when he came home after bootcamp. But he told his mother it wouldn't work.
Then he got this great smile on his face and said "Then I saw your mother again....at the bus stop with Margie (one of my mother's great life-long friends) and boing! I knew. She didn't like me you know, said I was too bossy. She was a tomboy, played on your uncle's teams and she could outhit everyone on my team. But what could I do, I was running the team, I wasn't bossy."
So I wrapped up the night with smelly tuna. Hanging with my parents. Life is good.
My mother was watching some movie that had people yelling. My father came downstairs and pretended to yell at her about the volume. Then he said "I am Frank McInnis and I approve this message!"
My parents crack me up.
Thursday, October 28, 2010
Today is the day I moved back to my parent's house.
My father took everything to the 3rd floor, my old bedroom.
My uncle Walter and his partner Tom sent flowers - "Welcome back to the Hood."
There is a new bed and pillows and sheets. And water and tissues by the bed.
And I sobbed myself to sleep.
I want to be in my own bed. I don't want to be here. My Dad repainted the walls. The windows and curtains are freshly washed. The windows look out on the lower half of Charlestown, I can see the Mystic River bridge. There is a lovely breeze. It's a very nice home and I was happy here growing up. Every half hour, the bells from St. Francis play up on the hill.
I don't want to be at Jen's, with my bedroom looking out that nifty bow window. Where I can walk out in front and be facing Kingston Bay. Where I can go flop on Jen's couch and we can watch TV and laugh.
I don't want to be in the fabulous Mandalay Bay suite with the two person jacuzzi and twenty four hour room service.
I don't want to be at Sherri and Mike's with the big bed with eight pillows and the clubhouse with the indoor/outdoor pool. Even though they went so far out of their way to bring me there and show me a great time.
I don't want to be at Mary's where she went out of her way to give me her own bed because it was near the better bathroom. She made sure she had bananas and juice and Twinings tea. She was gracious to a fault, even when we thought I broke her brand new washer.
I want to be in my own bed, in the room that was too small for a headboard and footboard. My room where the flat roof amplified the sound of the rain and the squirrels sounded like they weighed 100 lbs. The window at the foot of my bed needed a stick to hold it open and the wall between me and the living room was made of tissue paper.
In a house where there was constant work to be done, laundry, dishes, cleaning....and barely any time. Where there was a constant stream of kids and nonsense. I worked more than full time and went to dinner, lectures, movies.... My biggest problem was who would mow the lawn and getting to the fridge before they ate my leftovers.
And now there is sleeping and crying.
I know there is more, but right now, that's all I see. Each cycle is successively worse and I have so much more to do. I am exhausted.
You're reading this and thinking....."The title says I should be grateful....."
Yeah, I was much worse earlier before I slept for a bit.
I was picking up a prescription, or rather not picking up a prescription since I was a day early and my insurance wouldn't pay for it.....anyway, I ran into Beth. Beth who has NEVER touched me in the 30 some-odd years she has known me....gave me a hug. That's how bad I look. I keep feeling like I should apologize to people.
Kathryn called because Beth sent her a text. That was good because she is always funny.
I wore my sweats & flip-flops to infusion.....no cookies or treats. I was 20 minutes the late. They all told me very cheerfully that it was fine...however....whenever I get there. Whatever works. At least I still manage to shower, ever on the worst days.
It's also the first week of my 4th cycle of chemo.
After today's infusion appointment, I am going to stay with my parent's for the rest of this cycle and I have no idea what my internet availability will be.
So there is going to be some lag time.
I should have emailed teammates.
I should have a post written.
I should have lots of things, but I don't.
The bright side is that I should finish strong since the contest runs into Veterans' Day and I will be finished with this on the 4th.
So, please go read about Project Valour-IT & get ready to participate. I'll pull my shit together as soon as possible.
I want you on #TeamNavy!!! I want your money, I want your time, I want your blog, I want your Twitter account, I want your Facebook page.
Wednesday, October 27, 2010
From Wikipedia -
"In the United States, the Navy League of the United States organized the first Navy Day in 1922, holding it on October 27 because it was the birthday of the Navy-supporting President Theodore Roosevelt. Although meeting with mixed reviews the first year, in 1923 over 50 major cities participated, and the United States Navy sent a number of its ships to various port cities for the occasion. The 1945 Navy Day was an especially large celebration, with President Harry S. Truman reviewing the fleet in New York Harbor.
In 1949, Louis A. Johnson, secretary of the newly created Department of Defense, directed that the U.S. Navy's participation occur on Armed Forces Day in May, although as a civilian organization the Navy League was not affected by this directive, and continued to organize Navy Day celebrations as before. In the 1970s, the "birthday" of the Continental Navy was found to be October 13, 1775, and so CNO Admiral Elmo R. Zumwalt worked with the Navy League to define October 13 as the new date of Navy Day. However, Navy Day in the United Stares is still largely recognized as October 27th. "
Happy Navy Day!
By Zinie Chen Sampson
RICHMOND, Va. - Relatives of the 17 sailors killed in the 2000 bombing of the Navy destroyer USS Cole are asking for the right to press emotional-distress claims against the Republic of Sudan, which they say provided financial support and a safe harbor for the al-Qaeda attackers.
Read the rest here.
I hope this works. If nothing else, it leaves the government of Sudan that much less money to persecute Darfur.
I am enjoying another vid from the 3rd graders of Tussing Brook Elementary (here's a link to the first vid)
Monday, October 25, 2010
1812 - The U.S. frigate United States captured the British vessel Macedonian during the War of 1812. Great pics and details on the Naval History & Heritage Command FaceBook page. Like them while you are there.
1854 - The Battle of Balaclava in the Crimean War - You know......The Charge of the Light Brigade.
1944 - We were in the midst of the Battle of Leyte Gulf. An excellent post on this is SteelJaw scribe's offering last year. BZ Taffy 3! I rounded up a few links last year on the 65th anniversary.
1962 - a battle of a different sort -
US Ambassador Adlai Stevenson presented pictures of Soviet-built missile bases in Cuba to the UN Security Council. Stevenson challenged the Soviet ambassador to deny the evidence in front of what he called "the court of world opinion." Stevenson added, "I am prepared to wait for my answer until hell freezes over, if that's your decision."
1983 - Operation Urgent Fury
Of Medals of Honor awarded for actions taken on this day, I would offer two.
My cousin Westmoreland? No, my fair cousin;
If we are mark'd to die, we are enow
To do our country loss; and if to live,
The fewer men, the greater share of honour.
God's will! I pray thee, wish not one man more.
By Jove, I am not covetous for gold,
Nor care I who doth feed upon my cost;
It yearns me not if men my garments wear;
Such outward things dwell not in my desires.
But if it be a sin to covet honour,
I am the most offending soul alive.
No, faith, my coz, wish not a man from England.
God's peace! I would not lose so great an honour
As one man more methinks would share from me
For the best hope I have. O, do not wish one more!
Rather proclaim it, Westmoreland, through my host,
That he which hath no stomach to this fight,
Let him depart; his passport shall be made,
And crowns for convoy put into his purse;
We would not die in that man's company
That fears his fellowship to die with us.
This day is call'd the feast of Crispian.
He that outlives this day, and comes safe home,
Will stand a tip-toe when this day is nam'd,
And rouse him at the name of Crispian.
He that shall live this day, and see old age,
Will yearly on the vigil feast his neighbours,
And say 'To-morrow is Saint Crispian.'
Then will he strip his sleeve and show his scars,
And say 'These wounds I had on Crispian's day.'
Old men forget; yet all shall be forgot,
But he'll remember, with advantages,
What feats he did that day. Then shall our names,
Familiar in his mouth as household words-
Harry the King, Bedford and Exeter,
Warwick and Talbot, Salisbury and Gloucester-
Be in their flowing cups freshly rememb'red.
This story shall the good man teach his son;
And Crispin Crispian shall ne'er go by,
From this day to the ending of the world,
But we in it shall be remembered-
We few, we happy few, we band of brothers;
For he to-day that sheds his blood with me
Shall be my brother; be he ne'er so vile,
This day shall gentle his condition;
And gentlemen in England now-a-bed
Shall think themselves accurs'd they were not here,
And hold their manhoods cheap whiles any speaks
That fought with us upon Saint Crispin's day
Two items turned up that were a little unfamiliar. A black dress sweater and a white blouse. I thought, this black sweater is perfect for the black slacks and sleeveless black & raspberry top I want to wear.
I packed it.
I wore it in Vegas & Annapolis.
I bought another sleeveless black & royal blue top because I was so happy with the "look".
I even put it over my black silk lounging pajamas to make my appearance a little more modest in the "house of bloggers".
Eventually I recalled buying the white blouse, but not the black sweater.
I noticed it was a "dry clean only" item. That was strange since I avoid items that need to be ironed....much less dry cleaned.
I wore it today, Jen & I both had appointments in Boston. When we were checking in at infusion, Jen turned to me and cocked her head to the side.....
"Is that my sweater?"
"Ah....I don't know."
The woman waiting behind us laughed and said "You are so bagged!"
We figure that I must have scooped it up from her room when folding my clothes from the laundry. Although Jennifer still labelled me a kleptomaniac.
Bye, bye, nice black sweater.
Otherwise we just had the nice normal steroid rage. As we were leaving infusion, the elevator doors opened on the first floor. there were two young ladies waiting to board. One moved to the side, the other stood there. Right in the way. Jen moved around her. I looked at her -
"Don't worry. Just stand there. In the way.........Jackass."
Gotta love steroid days! funny thing is, they gave me an oxy during infusion so I was kinda relaxed and mellow.
Sunday, October 24, 2010
I left the last charger at Mary's house. She will be sending it back. I will probably buy a new one. I will go searching for the car charger.
At one point I had three chargers and a car charger. But my charger looked like chargers that went with the phones of some of my boys and two disappeared. So I took to keeping the last charger hidden. And I lost track of the car charger when I got the soccer-mom-van because the lighter in the can has no power.
So now, I am POWERLESS.....lol.
But in the meantime......
I am not ignoring you. You can email or Tweet or Facebook or comment here.
Right now I am headed off to dinner.....HOT DATE!
But I will look later....maybe.
Saturday, October 23, 2010
Besides, I could have gone shopping for one of those "wench" outfits......the plus side of gaining all this weight is that I could really rock the "spilling out of the bodice" look.
On a day like today, cool, sunny.....that would have been really fun. I'm not big into it like some, but I have been a few times and it's fun. Especially with kids. I still have a flowered headpiece with ribbons down the back from King Richard's Faire. Grace and I took the kids and I had to have them for Debbie, Genevieve and I....Grace wouldn't wear it.
So if you are there, wave to my friend Mike....he's the guy with the biggest grin because he is there with the three prettiest girls.
My parents? Well the bed they ordered hasn't arrived yet and I wasn't in the mood to sleep with my legs hanging off a loveseat. And there is no Internet.
Grace's? Well there was a bed and a long couch and a futon. But while Grace has Internet, it isn't WiFi.
Jen's? Even tough there was a ton of crap left on the bed when I scooted out of town and Jen, unlike my father and Grace, will not get up early and make me breakfast and it means driving 30 more minutes......there is WiFi at Jen's.
So................guess where I ended up...... I am a WiFi addict.
My clothes, books, toiletries, wallet.....they are all still in the car. But not the laptop.
Friday, October 22, 2010
Good for both of us! I know I am very nearly out of steam and will be lucky to make it to a bed without falling down. This trip has been absolutely fabulous, but really draining.
From Boston to Vegas, to Williams, AZ, to Phoenix....then Annapolis - with a side trip to DC.
I was in Annapolis for the USNI Naval History Conference and I must tell you - this was the best USNI event yet! That's saying a lot since I have loved them all.
For this event, Mary, the admin for the USNI blog, had several Navy bloggers - Galrahn of Information Dissemination; Phib of CDR Salamander; Eagle1 of Eagle Speak; XFormed of Chaotic Synaptic Activity; LCDR BJ Armstrong, USN of USNI blog and of course....My Marine, UltimateRatioRegis also of USNI blog (who has a fabulous post about GEN Conway, USMC today).
Some of the bloggers were in a nearby hotel, but many of us rotated through Mary's home which she graciously opened to us.
The first night, My Marine carried my suitcase of bowling balls (when he picked it up he made some crack about bringing my own bowling balls) to the second floor where Mary had thought of everything I could need. She pointed out the location of the washer/dryer/laundry detergent because she knew I had been traveling since I left her in Vegas where we shared the most fabulous suite at Mandalay Bay. Really, the secret to good travel is knowing who to hang with!
Once I had dumped all my stuff and brushed my teeth we headed out to dinner at The Chart House in beautiful downtown Annapolis. Dinner was attended by all those listed above and we were joined by LCDR Claude Berube, USNR who was a panelist for the conference.
I can't even tell you how many wild and interesting conversations happen when you get a group like this together. But my favorite was a highly technical, over-my-head thing about cell phones between XFormed & Galrahn. A few weeks ago I was having lunch with XFormed in Tampa and he was trying to explain some highly technical thing to me and I was lost. But in a flash I saw him, in my mind's eye, talking to Galrahn and the two of them on the same wave length...and me...lost. And now here it was, exactly as I pictured. At one point when they both paused for a moment, I told them "You know, I imagined this exact conversation a couple of weeks ago." LOL! I wasn't disappointed.
So, like good little children, we left at a decent hour....although a certain person, who shall remain nameless, did abandon us wayyyyyy earlier........lol.
I was up early and stood at the top of the stairs, listening for signs of life from my housemates. I heard none and decided this was a good time to shower. Afterwards, I heard movement downstairs and went down to the kitchen. There I was met with whining and sobbing about using all the hot water. I believe the quote was "We spent to morning running pipes from the neighbors to get hot water". I simply explained to them that the Navy and the Marines had taught them to take very, very short showers.......so that I could enjoy "Hollywood" showers. Sheesh! Don't they know who I am?
They headed off to the conference before I did. I move slower in the morning than most. But I took the extra time to make sure I was organized and started a load of laundry.
This is where I will leave off for now, since the actual conference should have it's own post anyway.
Thursday, October 21, 2010
Yesterday was the USNI History Conference on piracy and it was excellent. Lot's of things I hadn't considered from both sides - ramp up our presence or back off a little.
Lot's of fun with USNI friends and fellow bloggers.
Now...what's next? I have some stuff today - they are actually letting me back in the Pentagon. LOL I know, that's what I am thinking too.
But then I am free until Monday when infusion begins again. And I can push that back to Tuesday if need be.
So, what next?
Yesterday kinda wiped me out and I had to bail on the gang. Although My Marine bailed with me and now my head is full of crazy, obscure WWII European theater knowledge.
But today will be a lot of walking, the Pentagon always is.
I guess I will have to see what's up tonight.
Tuesday, October 19, 2010
Monday, October 18, 2010
Per the request of Major Ziergnfoos [sic] the 25th Infantry Division's Strategic Communications guy, a guest-post by the Commanding General of the 25th Infantry Division, MG Champoux:
"A Call to Action - Military Children in Hawaii"
We've known for decades that Hawaii is a great assignment - except for the schools. The lack of quality public education in Hawaii is an assignment deterrent for many and a constant quality of life issue for those assigned here.
We now have a unique opportunity to inform and influence the education of our children in Hawaii and perhaps all children in Hawaii. U.S. Pacific Command (PACOM)has teamed up with John Hopkins University for the first-ever "Military Child in Hawaii" study. All Soldiers with school age children, assigned in Hawaii , are invited to participate, whether your children are in public, private, charter, home school, or off-island. We need you to speak up and be heard.
Soldiers and family members can expect to make many sacrifices in the service of our Nation, but your children's education isn't one of them. I urge you to take this survey, and allow your children 10 years and older, to take this survey. To sign up for this survey, simply go to http://www.hawaiikids.org
Posted by MG Champoux
And now for more insight, I recommend you head over to "The Burn Pit"
Friday, October 15, 2010
Yeah, that was me.
The foot is better, but not normal and I was out of water and hungry. I could call room service and pay $4 for a bottle of water and $6 for juice.....or I could put on a bra, throw on my sweatshirt and sneak to the shop in the lobby.
Yeah, that water was only $3.00.
I walked and stood around and didn't rest and stayed up too late.
My foot swelled up like a balloon.
I have been in bed all day with the foot propped up on pillows.
It was totally worth it!
BlogWorld Vegas, baby!
Thursday, October 14, 2010
It's a line from a Steve Martin monologue that my friend Kathy and I use when we mean "You are way behind on this story so let me catch you up quick."
So, once again I have been penny-wise and pound-foolish. Lot's of missing the forest for the trees. I deliberately planned to fly to Vegas on the 13th - crazy early in the morning - for a reason. I wanted to leave the 12th open for a Twitter project about the tenth anniversary of the USS Cole attack. I wanted posts and FB posts and to round up other Internet mentions. Suffice to say there was a whole plan. Then on the 13th, I would fly into Vegas and spend the afternoon doing Navy birthday stuff.
And..like with many of my plans........
Saturday I was thinking about this week and I couldn't remember why I was waiting for the 13th. So I went online and changed it. Which left me with a night here with no hotel. I wasn't worried or anything, my cousin Jessica and her husband Mark live here. It's not like I'd be sleeping in the streets. Plus Priceline had tons of rooms. It's really impossible to be stranded without a hotel room in Vegas if you have $20 and a credit card.
So I am flying on the 12th and during my layover in BWI I ask Priceline for a 4 star hotel for $40, the upper limit of my budget. They give me South Point. Which had it's ups and downs, but overall was very nice. Nice, new solid construction. Very clean. Giant room. Free lunch - literally.
But they wanted $14 for the Internet in the room and there was no free Wi-Fi in the lobby. So I balked at that.
The result....THIS was pretty much the only place on the Internet where the Navy's birthday wasn't celebrated. Really Maggie?
Then it was a $25 cab ride to Mandalay Bay where I am sponging off of someone else's room.
Let's review - for the sake of scoring a 4 star hotel, I spent an extra $25 in cab fare and had no Internet for 16 hours. As opposed to staying at Excalibur, which is a 3-star, but a known quantity and a free tram ride from Mandalay Bay.
Once I got here to Madalay Bay, everything improved. I am hanging with my pal Mary Ripley, blog admin for USNI. We had dinner with BlackFive, Laughing Wolf, Carrie, and Cassandra. It was such fun I stayed later than I should have...but that's what trips like this are about. I can sleep another time.
This morning I was awoken by Michael Jackson music and thought "What jackass is playing this music so loud that I can hear it?" Yeah, it was the alarm in my room, lol! I forgot to check it before I went to sleep.
So now I am awake and I am going to shower and hopefully be where I am supposed to be this morning.
Tuesday, October 12, 2010
Staying at South Point tonight. It was a crazy good deal on Priceline for a 4 star hotel near the airport. I just want to get there and sleep. I slept 10 hours last night. I slept between Logan and BWI. I will sleep on the way to Vegas.
Monday, October 11, 2010
I am not ignoring anyone. I will get to everyone. I promise.
They tried to ween me off of the Lasix....mistake! I puffed right back up and after barely getting through a chorus of Happy Birthday at the joint Debbie/Dad party....I went off to Genevieve's bed and fell asleep for an hour and a half. Good thing Gen is in Australia so I can hot rack, huh?
I am still headed to Vegas this week. It's not like I have to walk. I wouldn't make it a block. LOL
Next Saturday is still the Grand Canyon.
And Wednesday the 20th is still NAVY!!!!!! Are you going to be in the area of Annapolis Marriott Waterfront Hotel, Annapolis, MD you want to come to this -
The 2010 U. S. Naval Institute History conference "Piracy on the High Seas: Can History Help Defeat Present Day Pirates?"Tell me that isn't the coolest thing evah? You can't. Plus, if you go....you get to hang with me. What more could you ask for?
Friday, October 08, 2010
So I haven’t finished it…yet “steroid” stories are piling up on me.
Like last night…..
So, this is “Girl’s Weekend”. My mother, sisters, niece, etc will be at the Kelley family cottage tonight. This tradition started when Frankie was really young, right after a trip to New York, so I am going to guess 16 or 17 years ago. My mother used to work for John Hancock Insurance Company, or, as it was known in Boston “The Hancock” and I worked for “The Phone Company”. No one needed more info to identify your employer. Anyway, every December, “The Hancock” facilitates a Christmas shopping trip to New York. My mother had left “The Hancock” in the 60s, but some friends are for life, so she was going and she took Grace & Jen. I was, as I am now, very snotty about New York. But the following year she made it clear she wanted all her daughters to go, so really, you know I would have travelled to Timbuktu. It was such a comedy of errors, that if there isn’t already a post here about it (who knows with my sieve like memory), I should write one!
But the following year I said I could recreate all the good parts of the trip here at the cottage – dinner, shopping, sight-seeing. And I did. And ever since on Columbus Day weekend some of us come here to spend the first big fall weekend.
So I came up last night. My packing left much to be desired. It was a long day. It was infusion/steroid day. Did I want leftover soup for dinner? Or my delicious leftover East Bay steak tips? I didn’t know. Well if it was soup, I should grab crackers….oysterettes or Ritz, I took both. If I took the steak I would need a veg, I took broccoli….wait I need butter. What about dessert? The orange? The cookies? The spumoni?
Ok, so the food bag is ridiculous.
Wait, I need to go to Wal-Mart….where I forgot I packed the toothbrush and bought another.
Stuff from the house on it’s way to the storage facility crowds the giant-soccer-mom van…yeah, that’s back – FINALLY. And that’s another “steroid/chemo/brain drain story”, I spent $100 and had no van for 6 weeks so I could win a $40 argument. But I have principles!
So I get to the cottage and use my cell phone to see the padlock. Fine. I get on the back porch. I rifle my pockets for the key to the backdoor. No key ring. The van keys are on their own ring. I look through the van, it’s chaos. No interior light because of a fuse. Stuff from my house, stuff for the weekend, stuff from Wal-Mart. No key. I unload a bunch of stuff; it has to turn up, right?
I call Grace and tell her that I may be sleeping on the backporch, but it’s ok, Frankie has mistakenly moved the yellow couch to the back porch instead of my old house…so there is somewhere to sleep.
Finally I go back to Jen’s house…..quick search, no keys.
I go back to the cottage. I look in the back of the van and see a blue Bath & Body Works bag and something fires in my brain. YES! That is the bag with the important stuff…medications, phone charger, laptop charger, keys.
Ok, I am in the cottage. I straightening and cleaning, but there is actually precious little to do because I am following my cousin AnnMarie and it’s spotless. So I decide to take a bath. The bathroom looks fine and I am sure it was, but I am phobic about this, so I spray cleaner in the tub and let it soak in or up or whatever. I throw some sheets I brought in the washer. I put away all the crazy food I brought. I put out my pills for the night and morning with bottled water. I put on FoxNews. I open the front door and throw some cushions on the front porch chairs. I put some leftover wontons in the oven. I light a candle to offset the chemical smell from the bathroom cleaner.
Then I realize I left a bag in the van. I take just the van keys, open the inside back door and step onto the back porch and……
…pull the effing door shut behind me!!!!
Really? Am I really standing on the back porch, locked out?
Yes, I am.
I look at the door which was newly re-enforced this past spring. Nothing is helping me there. I look at the windows….nope, not even before steroids packed on all this weight (yeah, that’s right, the steroids eat those cookies, not me). I can’t even say “Screw it!” and sleep on the back porch because eventually the wontons in the oven will set off the smoke detector.
Then I realize that the front door is open and all that stands between me and cottage is a hook and eye lock. I go through the van for something to slip in between the door and the lock. There is really nothing but a piece of card board from a gum packet. I walk around to the front and try to slip it in. But it’s a no go. Apparently I have no burglary skills. Fuck it. I stick the car key in the screen and slit it. This will not make my parents happy.
Steroids didn’t make me mental….I did shit like this all the time. But steroids had me hysterical, swearing and talking to myself with tears rolling down my face. Upset that I can’t process. Upset that I can’t problem solve. I did this stuff before, but it was funny and I was able to resolve my problems. Don’t get me wrong, this was funny. I called Grace. We laughed. But I had to calm down and wash my face first. In the moment, I couldn’t cope.
Thursday, October 07, 2010
Don't ever buy the bullshit that these are Palestinian "freedom fighters". They are cowards and terrorists. Nothing more than filth.
And never forget that terrorism against the United States didn't start on 9/11.
Wednesday, October 06, 2010
H/t to BlackFive
It's a great story...and I never miss the chance to give a shout-out to Sailors! This great story would not be possible without the US Navy, particularly CAPT Dan Pederson and his crew. Well done!
Read about USS Ranger Foundation here.
Tuesday, October 05, 2010
Letter from Iraq: When you’re the 'battle buddy' unexpectedly in trouble
CAPT Mills squanders an opportunity to write about several important issues....deployment stress....the importance of "battle buddies"....the strain on a marriage of multiple deployments....just to air his own dirty laundry. His overwhelming need to collect a pound of flesh is disgusting.
Whatever happened in his marriage wasn't just his wife's fault and it wasn't caused by the deployment. Deployments exacerbate underlying problems. It takes two for everything in a marriage, good and bad. But this jackass decided that he needed to throw his wife under the bus.
Here's the deal - when you have children...THEY are your first responsibility. Your wounded feelings that you indulge here under the very thin guise of some kind of "let me show you my pain so others may benefit"...is a total disservice to those children.
Others may read your letter and call it bravery, but you aren't fooling me. You aren't some lonely wounded soldier reaching out from the depths of pain during deployment. You are a public affairs officer who knows exactly what he is doing. This letter is completely calculated, months after the fact to hold the mother of your children up to public ridicule.
I don't care who did what. I don't care if you are hurt. I don't give a rip that you are deployed.
You are less than a man. You are a child. A bitter, selfish child.
I hope it was worth it because you are the one who must look in the mirror and see that sorry reflection.
This really brings back unpleasant memories for me. When my ex and I were divorcing, we were mandated to attend these stupid group sessions on how to deal with your spouse so your children weren't further traumatized. We didn't need it. We were adults. We worked our own shit out. Better than that...we were friends. We still are. But we couldn't get the divorce with out attending. Sitting in that room listening to stupid people say stupid things almost killed me! I finally raised my hand and told them they were driving me crazy. One woman told us that every night she set a place at the table for her ex. She said he often came by and criticized her parenting skills and it made her feel bad. I looked her right in the eye and said "My grandmother always said people only do to you what you let them do to you. So if he makes you feel bad, you are letting him. So stop and stop setting a place for him." I went on and just as I was winding down, the custodian came in and said someone had left their lights on in a gray Buick and their battery was dying. Well, wouldn't you know it....it was my car. So I ended with "that's me and if my battery is dead, you know what I am going to do? I'm going to call my ex. Then he and his girlfriend will come down and jump the car. And they will probably know without asking that I need M&Ms and she will bring a bag. We get along because that is what is good for my children." And I walked out.
That's what you do when you have children Capt Mills, you suck it up and put you petty grievances aside. You lick your wounds in PRIVATE and you put on a game face for your children's sake.
So tonight when you get on your knees and pray to whatever Deity that you sorely disappointed with this letter - thank him that I am not your wife's sister, cousin or friend. Because I would belt you if you did this to someone I loved. I hope she has brothers. Mean brothers. Or better, a vicious sister like me.
As I tell people about my new, positive results on chemo, one of the overwhelming responses I am getting is "I knew it!"
Ok....no you didn't. Because I didn't.
You had faith and you hoped it would work. Because you care about me....want what's best for me....worship me....as well you should.
But you didn't know.
All evidence pointed in the other direction. The guy at Dana Farber told me point blank that waiting until I was symptomatic before trying anything was a fair option. Sure he pissed my father off royally and I wouldn't treat at Dana Farber.....but it is where people literally come from all over the world to treat this cancer. And just cause the guy's bedside manner left lots to be desired doesn't mean that it wasn't the considered medical opinion of a specialist in a world renown hospital.
Dr. Hochstin, Dr. Miller, Celgene and the IMF all agreed in October, 2008 that my best option was Revlimid and low dose dexamethasone.
All literature said that the best odds were on that combo and going for the three drug combo with Velcade would be grueling and have lower odds of success once I failed at one regime.
Dr. Hochstin and Dr. Miller agreed that for most people, Velcade is much more difficult. Dr. Hochstin referred to it as "toxic".
It was also universally agreed that Velcade could bring on irreversible peripheral neuropathy. That I could take this chance and end up permanently in a wheelchair, in excruciating pain. Seeing as I how I had endured eight months of peripheral neuropathy (which thankfully reversed itself).....I had to consider that.
So you didn't know.
You may not mean it this way, but it comes across as a criticism of what I chose for myself in March of 2009.
When you tell me that you *knew* you sound like someone who buys a scratch ticket and after they reveal their cash prize, they say "I knew this was a winner."
No you didn't....you hoped it was a winner. You hoped this would work. And to be clear....it hasn't *worked* yet.
I'm very touched by how many people care that this appears to be working. I am grateful for all the people rooting for me to achieve remission. And let's be clear, that's the goal. There is no cure for multiple myeloma.
S0 lay off the "I knew it!" crap.
Especially on steroid day.
Especially if you are within my physical reach.
Monday, October 04, 2010
Sunday, October 03, 2010
Friday, October 01, 2010
At diagnosis my number is crazy and makes no sense. The normal value of IgA in a person's blood is between 75 and 375....give or take. Once the cancer makes it grow out of control, the average Multiple Myeloma patient begins to experience symptoms as they hit the low thousands.
My first number was 5850. That is well past the point where people begin to suffer bone damage. But my bones were rock hard. So it took a while to accept that I had cancer. Every doctor, nurse, or healthcare professional I came into contact had the same question when they saw my number - "Do you need a pain killer?" It was their clear assumption that my number could only mean excruciating pain. This wasn't true for me and made it that much harder for me to believe I had Multiple Myeloma.
But eventually I did.
So that plan was to take the super successful Revlimid/low dose dex and knock the number down into the hundreds and have a stem cell transplant.
But I was part of the 12 or 18% (I forget now, too many numbers in my head) for whom this plan doesn't work. It knocked the number down, but only to 3310 and then it bounced right back up. That's the other half of the equation. It has to go down and stay down. So after four cycles, we stopped. I didn't recover from the side effects of the drugs for eight more months, much longer than most Revlimid/ ld dex patients.
That was quite ironic. Think about it.....I waltz around the Internet telling you all how unusual and special I am. I am just as insufferable in real life...ask my sisters. This is one time it would be better to be part of the crowd, huh?
It took a while to accept that this failed. That based on what I read and was told, Revlimid w/ ld dex was my best shot. That plan B had far lesser chance of success.
It took 15 months to even get me back in Dr. Miller's office. I was 4190 on March 24, 2009 when I left. On June 1, 2010 when I returned - I had climbed up to 5060. I had resigned myself to the fact that I would have to go back and try again for one reason - my parents. I did not believe that this would work.....AT ALL. I was doing because not doing it would have hurt and upset my parents. I would deal with what I felt would be a year of pain (based on my previous 4 months of treatments and 8 months of recovery) so that I could face my parents with a clear conscience.
With that said....you see now that I have it all mapped out in my mind. I think - my number is 5060 and I will go through four to six months of this drug combo - Revlimid/ld dex & Velcade. This will be more difficult even though the dose of both Revlimid & dexamethasone are lowered and given over a shorter span of time. I think that because from everything I was told and have read.....Velcade is much more toxic. So yes, it's only 10mg of Rev as opposed to 25 ......and yes it's only 14 days at a time instead of 21...and yes it's less dex. But we are throwing Velcade on top of it and I am weaker now because even though I did my best to ignore it and hide from it....I am symptomatic.
So I steel myself to accept four to six cycles of poison, have it fail and face eight months of recovery. And then everyone will leave me alone because I tried.
Then last Tuesday, the 21st, Kate, my nurse practitioner tells me that just one cycle of Velcade and dex (the Revlimid wasn't ready during the first cycle) has dropped the 5060 to 3040. It took me a while to process such success. A 40% drop with just 11 days/4 infusions of Velcade with low dose dex and no Revlimid.
Now today, the results are back for the second cycle. The second cycle ran from September 7th through the 20th. 11 days of Velcade and 14 days of Revlimid with ld dex.
Elizabeth, my infusion room nurse put the printout of my test results from Tuesday and today on the tray next to my arm and Grace and I played casual. The second Elizabeth walked out the door, Grace snatched them up before I could blink. The first page was my kidney function results from Tuesday.
Oh, by the way, I dropped 11 pounds of fluid since Tuesday and my blood pressure dropped from 152/90 t0 124/82.....thank you Lasix!
Grace read the first page and handed it to me. She read the second page with the IgA number.
"Is there a formula for the IgA number? I must be reading it wrong. Do you add a zero?"
She handed me the page. My IgA was 689.
It's followed by the word "Repeated" in bold type. Clearly someone else, either in the lab or Dr. Miller's office didn't believe it either.
That's in the hundreds.
That's what we are shooting for.
And here it is. Not after six rounds. Not after four rounds. After just two...well really less than two since the first round wasn't complete.
I put it down and sent Jen a text. Grace picked it up read it again. She put it down and I picked it up again. We did that a few more times.
Now remember, this is not the whole deal. Yes, it's down. Way down. But it has to stay down. Last time Revlimid did knock it down, but it didn't stay down. It bounced right back up. Revlimid did not produce a "durable response". This is a dramatic drop.....but it may not last. It may bounce right back up. If it does, it was for nothing.
But with those words of caution - cause I can't let my hopes get to built up.
****Please note, that in experiencing success like other people in this protocol.....I am in no way conceding that I am less than special and unusual.***
No Lasix driven trips to the loo.
I can't tell you the last time that happened.
I got a lot done yesterday at the house......after "going all Sonny Corleone" on someone (as My Marine put it).
Now I am going to go do more things while I am on a roll.
Oh, and we need a new homemade sugar scrub recipe. This batch felt great, but the smell of the brown sugar overwhelmed the rose oil and the oatmeal clogged the drain. Maybe I was supposed to put it through the food processor or something.
It's warm here and really windy. I love the sound of the wind.