Monday, February 28, 2011
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.
Sunday, February 27, 2011
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!!!
Friday, February 25, 2011
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
Thursday, February 24, 2011
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!
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.
Tuesday, February 22, 2011
Monday, February 21, 2011
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.
Sunday, February 20, 2011
Saturday, February 19, 2011
I am at the "Grafting" phase, which feels like the flu.
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.
Friday, February 18, 2011
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.
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!
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.
Thursday, February 17, 2011
Any help is great -
all of the above!
From Cassie Fiano - Marine returns from Afghanistan – two days later, his house burns down
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.
Tuesday, February 15, 2011
Sunday, February 13, 2011
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.
Thursday, February 10, 2011
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.
Wednesday, February 09, 2011
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.
Tuesday, February 08, 2011
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.
Monday, February 07, 2011
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.
Tuesday, February 01, 2011
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.
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.
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.