It's been good!
Hanging with Tom. Going through stuff that's here. Spending time with myself.
And - bonus - I found an old pair of glasses! I still haven't done anything about the glasses I lost in July. It was the Monday before Frank passed. Replacing them dropped so far down the list. There was a time before I had to stop working that I got a new pair every year. I had great insurance - thanks Bette - and I just never thought not to. Then one year I had to switch to bifocals and this pair went in a box. Cause you know I never throw anything away. Or at least that used to be the case. I have had to get more ruthless with that. Anyway, I was sorting through boxes, looking for stuff to throw away and I found these. They are not bifocals and they are at least 8 years old. But I can see distance and go to the movies again!
Tom made fun of the frames, but I assured him that they would have been the height of fashion at the time because Bette picked them out. I clearly remember stopping at the place in Pembroke with her on our way to Thursday night dinner. And that gave Tom pause because Bette is always "put together" as opposed to his "thrown together" mother.
I've got another week here. But I am not sure much more will be accomplished. Last night was my 8th (out of 14) night on Pomalyst. It's effect build, so as the 2nd week progresses it's more naps and laying around. But I'll still spend it with Tom!
Tuesday, September 20, 2016
Sunday, September 11, 2016
I Guess I Am Full
So full of grief and tears, that I can't tamp it down any more.
Everyday there is something new. One day it's little Frankie finding a book in a box in my bedroom that Frank bought on how to be a better father. Another day it's realizing that I have to take Frank's name off of my health care proxy.
And God help the person who aggravates me!
Is it because all the heavy lifting is done? Making sure the right people knew. Planning the celebration of life. Listening to all those people who wanted to talk about Frank. Taking care of his affairs and possessions.
All that's left is time to think.
Whatever it is, I knew I had to leave Boston. I needed the opposite of the theme from "Cheers". I needed a place where nobody knows my name. So I jumped on line and used all my Amtrak credits to arrange a train out of Boston, down to Staunton. I need days to sleep and cry without worrying who can hear me and who I might upset. And I need to make Tommy dinner and listen to what he has to say.
And considering how close I am to smacking the two old people behind me here on Amtrak train 65, I can't get to my hidey-hole in the Shenandoah Valley fast enough. They boarded somewhere in Rhode Island and haven't shut up since. At one point when I was trying to sleep (I brought pillows), she began reading him news stories off of the Internet. It was 1:30 in the friggin' morning! And apparently the two foot rests provided at her seat were not to her liking because I looked down at my arm rest (that I had wiped down with antibacterial wipes) and saw her dirty shoe! I quietly said "For Heaven's Sake" and she pulled it away. He just whines "Why is the train stopped?" and "The train is moving so fast I can't stir my hot cocoa!"
Thursday, my new least favorite day of the week was also Infusion Day. I got up early so I could vote - it was Primary Day here in Massachusetts. Packed. I don't really need to transport stuff between Boston & Virginia, but I had some stuff I was going to ship down, so I figured I'd put it in suitcases and check them and save the shipping costs on some stuff at least. Anyway, then it was off to Tufts. I had my gadgets & a magazine and snacks and water and lunch. I was prepared. After entering the main lobby, I walked over to a bench to pull my stuff together. Hitch up my shorts, put my Charlie Card away, sling my backpack.....and I sensed someone moving into my personal space. A woman about my age asking where her purse was. I told her it wasn't here. She gestured to my bags and said she left it right there. I said well it's gone now and I pointed out a guy in uniform "Go talk to that guy." Then she became a little more insistent telling me she put her purse right there before going into the Au Bon Pain next to us. "You left your bag and walked away? That was stupid." Meanwhile, I am proceeding with what I am doing, gathering my stuff. "Can I look in your bag?" My head snaps up "No, you can not look in my bag, now get the hell away from me!" She turns to the guy in the blue uniform (hospital security, BPD, I don't know I haven't replaced my lost glasses) and he turns to walk away. She looks at me surprised "You won't let me look in your bag?" I just walked away. I felt good, like I had opened a valve and let a little pressure bleed off when I told her to get the hell away from me.
Everyday there is something new. One day it's little Frankie finding a book in a box in my bedroom that Frank bought on how to be a better father. Another day it's realizing that I have to take Frank's name off of my health care proxy.
And God help the person who aggravates me!
Is it because all the heavy lifting is done? Making sure the right people knew. Planning the celebration of life. Listening to all those people who wanted to talk about Frank. Taking care of his affairs and possessions.
All that's left is time to think.
Whatever it is, I knew I had to leave Boston. I needed the opposite of the theme from "Cheers". I needed a place where nobody knows my name. So I jumped on line and used all my Amtrak credits to arrange a train out of Boston, down to Staunton. I need days to sleep and cry without worrying who can hear me and who I might upset. And I need to make Tommy dinner and listen to what he has to say.
And considering how close I am to smacking the two old people behind me here on Amtrak train 65, I can't get to my hidey-hole in the Shenandoah Valley fast enough. They boarded somewhere in Rhode Island and haven't shut up since. At one point when I was trying to sleep (I brought pillows), she began reading him news stories off of the Internet. It was 1:30 in the friggin' morning! And apparently the two foot rests provided at her seat were not to her liking because I looked down at my arm rest (that I had wiped down with antibacterial wipes) and saw her dirty shoe! I quietly said "For Heaven's Sake" and she pulled it away. He just whines "Why is the train stopped?" and "The train is moving so fast I can't stir my hot cocoa!"
Thursday, my new least favorite day of the week was also Infusion Day. I got up early so I could vote - it was Primary Day here in Massachusetts. Packed. I don't really need to transport stuff between Boston & Virginia, but I had some stuff I was going to ship down, so I figured I'd put it in suitcases and check them and save the shipping costs on some stuff at least. Anyway, then it was off to Tufts. I had my gadgets & a magazine and snacks and water and lunch. I was prepared. After entering the main lobby, I walked over to a bench to pull my stuff together. Hitch up my shorts, put my Charlie Card away, sling my backpack.....and I sensed someone moving into my personal space. A woman about my age asking where her purse was. I told her it wasn't here. She gestured to my bags and said she left it right there. I said well it's gone now and I pointed out a guy in uniform "Go talk to that guy." Then she became a little more insistent telling me she put her purse right there before going into the Au Bon Pain next to us. "You left your bag and walked away? That was stupid." Meanwhile, I am proceeding with what I am doing, gathering my stuff. "Can I look in your bag?" My head snaps up "No, you can not look in my bag, now get the hell away from me!" She turns to the guy in the blue uniform (hospital security, BPD, I don't know I haven't replaced my lost glasses) and he turns to walk away. She looks at me surprised "You won't let me look in your bag?" I just walked away. I felt good, like I had opened a valve and let a little pressure bleed off when I told her to get the hell away from me.
Thursday, August 25, 2016
I Made It Through Thursday
I don't know how, but I did.
4 weeks. 28 days. I think I will hate Thursdays for the rest of my life.
All day some part of my brain has been screaming FOUR WEEKS AGO.
But I kept pushing it away because little Frankie has been here since Wednesday evening.
I told someone today that I am still not entirely sure it happened. Maybe four weeks ago I had a break with reality. Maybe it was five minutes ago. Maybe Frank is fine and I am locked up somewhere.
This can't be my life. People are too stupid. People are saying the most astonishing things to me. I go through this a little with the cancer. People find out I have cancer and they tell me about theirs or their spouse/sibling/wife's nephew's stepmother. And now people try to tell me about someone in their life struggling with addiction. Or someone they lost to addiction.
Most of them mean it as a comfort. And it is.
But some want some kind of answer and I want to scream "If I had an answer, my kid wouldn't be DEAD!"
But the most ridiculous one yet was someone who proudly told me that they had not spoken to their addicted loved one in years. What? I understand that you can't enable. But you don't withhold your love, your caring, your very presence. If there is one clear lesson to be learned from Frank and I, it's that you always make sure your children know you love them. No matter what the circumstances. You never know. You could be in my shoes at any minute, for any reason. I don't understand how this person didn't see my horror. How it didn't freeze them in their tracks.
So now I work my way through until the next Thursday. Or not. Maybe I am sitting in a Geri chair waiting for more meds mashed up in applesauce.
4 weeks. 28 days. I think I will hate Thursdays for the rest of my life.
All day some part of my brain has been screaming FOUR WEEKS AGO.
But I kept pushing it away because little Frankie has been here since Wednesday evening.
I told someone today that I am still not entirely sure it happened. Maybe four weeks ago I had a break with reality. Maybe it was five minutes ago. Maybe Frank is fine and I am locked up somewhere.
This can't be my life. People are too stupid. People are saying the most astonishing things to me. I go through this a little with the cancer. People find out I have cancer and they tell me about theirs or their spouse/sibling/wife's nephew's stepmother. And now people try to tell me about someone in their life struggling with addiction. Or someone they lost to addiction.
Most of them mean it as a comfort. And it is.
But some want some kind of answer and I want to scream "If I had an answer, my kid wouldn't be DEAD!"
But the most ridiculous one yet was someone who proudly told me that they had not spoken to their addicted loved one in years. What? I understand that you can't enable. But you don't withhold your love, your caring, your very presence. If there is one clear lesson to be learned from Frank and I, it's that you always make sure your children know you love them. No matter what the circumstances. You never know. You could be in my shoes at any minute, for any reason. I don't understand how this person didn't see my horror. How it didn't freeze them in their tracks.
So now I work my way through until the next Thursday. Or not. Maybe I am sitting in a Geri chair waiting for more meds mashed up in applesauce.
Thursday, August 04, 2016
My Son Frank Has Been Dead For A Week
How bizarre to type those words and not wail like a banshee. I can see the screen because while I "leak" nearly constantly, I can pretty much hold it together. Why? Because there was nothing left unsaid between Frank and I. There are no regrets and no guilt. My son knew I had his back. Would we fight like cats and dogs over certain life decisions? You bet. But I backed his every play. Same as Tom his older brother. Same as Danny & Bill his brothers from other mothers (who coincidentally turned out to be women I loved, Patty & Christine).
Last Thursday, July 28th around noon, Francis Xavier Miller, Sr. lost his battle with addiction. I sat in Bay 15 of the South Shore Hospital ER and whispered in his ear that I wasn't leaving him, just passing him over to Mama Kelley his beloved great-grandmother (my grandmother) and Grandma Marie his loved and missed grandmother (John's mother). And that I knew there were plenty of friends lost too early to the same insidious addiction to load up the roster for a wiffle ball game where he was going. I pulled Frank's left arm out from under the sheet and rested my hand in his. Between the weight of his hand and his fingers being slightly curled, I felt just like he was holding my hand.
Frankie was born January 21, 1988. At the end of a ridiculously short labor during which I acted like it was the scene from Aliens where the alien eats it's way out of Kane, there was Frankie. Dr. Grady asked "It's a boy, what's his name?" I replied "Francis Xavier" and Dr. Grady repeated that and said it reminded him of a priest or a crooked politician. Well we all know which way that ball bounced.
Frankie was handsome, so was Tommy, but while Tommy was the spit of his father, Frankie had my coloring. And he was so friendly and adventurous. When he was three he was in love with Cindy Crawford. I remember him dashing from the bathroom, foaming at the mouth in mid tooth brushing session at the sound of her Pepsi commercial. She was his girlfriend. When someone pointed out that Cindy Crawford didn't know him, he replied "But if she knew me, she'd love me." Such confidence. At the time Crawford was married to Richard Gere and they were building a house in Duxbury. We were afraid someone would tell Frankie and he would set off up Route 3A to steal her away from Gere.
People kiddingly called him "The Mayor of Rocky Nook". Like Red Rizzo, he knew everyone and everyone knew him. He took it seriously, not in a power kind of way, but in a responsibility kind of way. People asked him favors and he always tried to help them. When there was a beach association task, he never questioned going and doing his part. But most of all, he believed in "Everbody plays or nobody plays." Frankie didn't allow other kids to be left on the sidelines. And that never changed. During this last week, people have called and texted and sent Facebook messages telling me how Frank did this that and the other thing for them. Always things he didn't have to do but did anyway with a smile.
I have never been ashamed of Frankie and his fight with addiction. Frustrated? Bewildered? Helpless? Oh yes! Frank had a hard time getting sober because he had a hard time giving over power. He would go down many paths and say "This will work, I'll just change this." or "I'll just do this step before that step." But finally he found the right path and surrendered himself. The last two years he was largely successful. Unfortunately, with addiction, you are never free, you are never fixed or cured. Sometimes the best you can hope for is longer periods of sobriety and shorter falls off the path.
The part that was hardest for me to accept was the fact that your recovery includes going back and pulling others up and out with you. But Frank embraced that. And now I see clearly - OF COURSE HE DID, lol! It was the adult version of "Everybody plays or nobody plays."
Frank wasn't some mythic figure. He stumbled. He hurt people. And he wasn't universally loved. There were people who disliked or resented Frank for one reason or another. Not the least of which was his struggle with addiction. There were people who turned away from him.
But Frank forgave everyone. I used to joke that Frank was sadly born without the gene that allowed a person to hold a grudge.
This isn't the best pic of either Frankie, Senior or Junior. But it's recent and it was a happy and fun day. Bunker Hill Day, 2016, at the parade in Charlestown.
Sadly, my much loved son is in the building you can see over his left shoulder. Carr's Funeral Home.
Last Thursday, July 28th around noon, Francis Xavier Miller, Sr. lost his battle with addiction. I sat in Bay 15 of the South Shore Hospital ER and whispered in his ear that I wasn't leaving him, just passing him over to Mama Kelley his beloved great-grandmother (my grandmother) and Grandma Marie his loved and missed grandmother (John's mother). And that I knew there were plenty of friends lost too early to the same insidious addiction to load up the roster for a wiffle ball game where he was going. I pulled Frank's left arm out from under the sheet and rested my hand in his. Between the weight of his hand and his fingers being slightly curled, I felt just like he was holding my hand.
Frankie wasn't my plan. He was the result of a hard fought campaign by his brother Tommy, with support from my sister Grace and my ex-husband John. I thought just one was just fine. I used to joke that children aren't like Lays potato chips, you could have just one. But Tommy didn't appreciate being the only - only child in the neighborhood. And Grace was ready to have a boy, so that with her daughter Deb (my goddaughter) she would have the matching salt-n-pepper shaker set. The final battle was pitched at my birthday party in 1987.
Frankie was born January 21, 1988. At the end of a ridiculously short labor during which I acted like it was the scene from Aliens where the alien eats it's way out of Kane, there was Frankie. Dr. Grady asked "It's a boy, what's his name?" I replied "Francis Xavier" and Dr. Grady repeated that and said it reminded him of a priest or a crooked politician. Well we all know which way that ball bounced.
Frankie was handsome, so was Tommy, but while Tommy was the spit of his father, Frankie had my coloring. And he was so friendly and adventurous. When he was three he was in love with Cindy Crawford. I remember him dashing from the bathroom, foaming at the mouth in mid tooth brushing session at the sound of her Pepsi commercial. She was his girlfriend. When someone pointed out that Cindy Crawford didn't know him, he replied "But if she knew me, she'd love me." Such confidence. At the time Crawford was married to Richard Gere and they were building a house in Duxbury. We were afraid someone would tell Frankie and he would set off up Route 3A to steal her away from Gere.
People kiddingly called him "The Mayor of Rocky Nook". Like Red Rizzo, he knew everyone and everyone knew him. He took it seriously, not in a power kind of way, but in a responsibility kind of way. People asked him favors and he always tried to help them. When there was a beach association task, he never questioned going and doing his part. But most of all, he believed in "Everbody plays or nobody plays." Frankie didn't allow other kids to be left on the sidelines. And that never changed. During this last week, people have called and texted and sent Facebook messages telling me how Frank did this that and the other thing for them. Always things he didn't have to do but did anyway with a smile.
I have never been ashamed of Frankie and his fight with addiction. Frustrated? Bewildered? Helpless? Oh yes! Frank had a hard time getting sober because he had a hard time giving over power. He would go down many paths and say "This will work, I'll just change this." or "I'll just do this step before that step." But finally he found the right path and surrendered himself. The last two years he was largely successful. Unfortunately, with addiction, you are never free, you are never fixed or cured. Sometimes the best you can hope for is longer periods of sobriety and shorter falls off the path.
The part that was hardest for me to accept was the fact that your recovery includes going back and pulling others up and out with you. But Frank embraced that. And now I see clearly - OF COURSE HE DID, lol! It was the adult version of "Everybody plays or nobody plays."
Frank wasn't some mythic figure. He stumbled. He hurt people. And he wasn't universally loved. There were people who disliked or resented Frank for one reason or another. Not the least of which was his struggle with addiction. There were people who turned away from him.
But Frank forgave everyone. I used to joke that Frank was sadly born without the gene that allowed a person to hold a grudge.
This isn't the best pic of either Frankie, Senior or Junior. But it's recent and it was a happy and fun day. Bunker Hill Day, 2016, at the parade in Charlestown.
Sadly, my much loved son is in the building you can see over his left shoulder. Carr's Funeral Home.
Monday, July 04, 2016
July 4, 1976
Some of you think this will be a post about our country's Bicentennial. Which was a grand time in Boston.
But it's not.
It's about a far away place - Entebbe, Uganda.
I've admitted dozens of times in this blog, that I was a bit of nerd. That from high school on I read both of Boston's big dailies, the "Globe" and the "Herald American" as it was known at the time. In the general frenzy leading up to Boston's celebrations and the Nation's celebrations, there was another news story.
Terrorists had hijacked an Air France plane to supposedly exchange passengers for some other imprisoned terrorists. To be honest, at the time I took them at their word. But now, older and more cynical, I think the point was just to kill Jews. This is not to say I ever in my life sympathized with Palestinians. However, I did at the time think they were reasonable enough to be negotiated with. People younger than me or with shorter memories may not realize that other planes got hijacked. Other hostages were taken. And police or governments worked it out. People took planes to get to Cuba or for ransom. At the time, to me, there seemed no reason to think this would be handled that way.
This was a mere four years after Munich and in my mind, the Germans had messed that up out of arrogance. There was strife and fighting all over the world. Northern Ireland was in a perpetual state of unrest. Just a few months before Palestinians had hijacked this plane, some crazy group had bombed a courthouse in Boston
So back to Entebbe and the hijacked plane which by the 3rd of July had had all of it's non-Jewish passengers separated and released. The crew however, wouldn't leave and I have the greatest admiration for them.
Being more wise in these matters than a 15 year old reading along in Boston newspapers, the Israelis knew there was no reasoning with the hostage takers. People can say till they're blue in the face that Palestinian terrorists are "nationalists". Whatever. First and foremost they are followers of Islam. The Jewish State of Israel had been dealing with them for ages. They knew that when a follower of Islam takes up arms and tells the world their grievances, it's just a cover. Whether it's "Black September" or the "PLO" or "ISIS" or "Al Qaeda", you can't "understand" them, you can't "reason" with them. A wise man once told us that "An appeaser is one who feeds a crocodile, hoping it eats him last".
The Israelis sent their own people into Uganda just before midnight July 3rd. But with the time difference of 7 hours, it all happened in time to be front page news for America's birthday!
Truth be told, that was the highlight of my day. The rightness of it. The justice of it. And now I know the wisdom of it.
But it's not.
It's about a far away place - Entebbe, Uganda.
I've admitted dozens of times in this blog, that I was a bit of nerd. That from high school on I read both of Boston's big dailies, the "Globe" and the "Herald American" as it was known at the time. In the general frenzy leading up to Boston's celebrations and the Nation's celebrations, there was another news story.
Terrorists had hijacked an Air France plane to supposedly exchange passengers for some other imprisoned terrorists. To be honest, at the time I took them at their word. But now, older and more cynical, I think the point was just to kill Jews. This is not to say I ever in my life sympathized with Palestinians. However, I did at the time think they were reasonable enough to be negotiated with. People younger than me or with shorter memories may not realize that other planes got hijacked. Other hostages were taken. And police or governments worked it out. People took planes to get to Cuba or for ransom. At the time, to me, there seemed no reason to think this would be handled that way.
This was a mere four years after Munich and in my mind, the Germans had messed that up out of arrogance. There was strife and fighting all over the world. Northern Ireland was in a perpetual state of unrest. Just a few months before Palestinians had hijacked this plane, some crazy group had bombed a courthouse in Boston
So back to Entebbe and the hijacked plane which by the 3rd of July had had all of it's non-Jewish passengers separated and released. The crew however, wouldn't leave and I have the greatest admiration for them.
Being more wise in these matters than a 15 year old reading along in Boston newspapers, the Israelis knew there was no reasoning with the hostage takers. People can say till they're blue in the face that Palestinian terrorists are "nationalists". Whatever. First and foremost they are followers of Islam. The Jewish State of Israel had been dealing with them for ages. They knew that when a follower of Islam takes up arms and tells the world their grievances, it's just a cover. Whether it's "Black September" or the "PLO" or "ISIS" or "Al Qaeda", you can't "understand" them, you can't "reason" with them. A wise man once told us that "An appeaser is one who feeds a crocodile, hoping it eats him last".
The Israelis sent their own people into Uganda just before midnight July 3rd. But with the time difference of 7 hours, it all happened in time to be front page news for America's birthday!
Truth be told, that was the highlight of my day. The rightness of it. The justice of it. And now I know the wisdom of it.
Sunday, June 26, 2016
I Don't Get It...
....why aren't there more arrests?
Today in Sacramento a group of Americans tried to assemble at the California State Capitol. And police stood by while a larger group of counter-protesters assaulted the first group. The larger group used a heckler's veto (which is not protected free speech) to stop speech they don't like.
I don't care what the first group believes or wants. I care that their right to speak freely in the public square was violently suppressed.
I don't care that in a civil discussion I may have agreed with the counter-protesters beliefs. Once they crossed the line to violate the civil rights of others, they are wrong and they lose my support.
Not to mention that the counter-protesters also attacked representatives of the media. I may whine all day about the media and their biases, but, you don't put your hands on them.
It was galling to watch the interviews after the fact with these criminals, and that's what they were. The counter-protesters were proud of the fact that they had just committed these offenses. They showed up, many with their faces covered, intending to do harm.
But the worst was watching the police do nothing. A handful of people were arrested. There should have been dozens and dozens of arrests.
Today in Sacramento a group of Americans tried to assemble at the California State Capitol. And police stood by while a larger group of counter-protesters assaulted the first group. The larger group used a heckler's veto (which is not protected free speech) to stop speech they don't like.
I don't care what the first group believes or wants. I care that their right to speak freely in the public square was violently suppressed.
I don't care that in a civil discussion I may have agreed with the counter-protesters beliefs. Once they crossed the line to violate the civil rights of others, they are wrong and they lose my support.
Not to mention that the counter-protesters also attacked representatives of the media. I may whine all day about the media and their biases, but, you don't put your hands on them.
It was galling to watch the interviews after the fact with these criminals, and that's what they were. The counter-protesters were proud of the fact that they had just committed these offenses. They showed up, many with their faces covered, intending to do harm.
But the worst was watching the police do nothing. A handful of people were arrested. There should have been dozens and dozens of arrests.
Saturday, June 25, 2016
Getting In Trouble
My previous post - November, 2015 - got a new comment -
Maggie, you okay ? Haven't heard from you since ........ November 8th !!
I wish you well, friend.
A follower from ....... oh, hell, everywhere ........... US Navy Retired RMCS (SS)
I wish you well, friend.
A follower from ....... oh, hell, everywhere ........... US Navy Retired RMCS (SS)
I'm sorry! This blog has really fallen behind on my list of priorities.
Things are good! Still in active chemo, but alive and fighting beats the alternative.
I get to spend lots of time with my grandson Frankie who is an absolute delight.
My social media focus has shifted to Twitter. I still read serious stuff and think serious thoughts, but my output.....
Thanks for the kinds words.
Sunday, November 08, 2015
Guess It's Been A While!
Last post was September 26th!
Well sorry about that. But I can only do one thing at a time. And for the past six weeks it's been packing, apartment hunting and moving.
Now, instead of the majority of my time being spent in Virginia with my son Tom keeping an eye on me, I'm back in Massachusetts! One of my oldest, dearest friends from grade school has stepped up to the plate. So Kathy will call 911 if I hit the floor in a heap.
God it's good to be back! I loved spending all that time with my oldest son Tom, even if I had to be in Virginia to do it. And now I am near Frankie and Danny & Bill. But let's be honest - the best part is I am near my grandson who turns two years old today! I have a fairly large bedroom & will be getting a second bed for sleepovers! I saw a pirate ship toddler bed online, but even I know $400 for a toddler bed is ridiculous.
And I don't know if it was pity or just to shut me up, but Dr. Miller cut my Pomalyst dose. Numbers are in good ranges but he won't completely stop it, so we don't know what would happen. Would the numbers shoot back up? Is it a durable response? A partial remission? But I'll take whatever I can get, so I am grateful for the lessening of the dosage.
So now that I'm settled, there are some events this week coming up that I hope to attend and blog about. See if I can't get this blog slightly back on track.
Well sorry about that. But I can only do one thing at a time. And for the past six weeks it's been packing, apartment hunting and moving.
Now, instead of the majority of my time being spent in Virginia with my son Tom keeping an eye on me, I'm back in Massachusetts! One of my oldest, dearest friends from grade school has stepped up to the plate. So Kathy will call 911 if I hit the floor in a heap.
God it's good to be back! I loved spending all that time with my oldest son Tom, even if I had to be in Virginia to do it. And now I am near Frankie and Danny & Bill. But let's be honest - the best part is I am near my grandson who turns two years old today! I have a fairly large bedroom & will be getting a second bed for sleepovers! I saw a pirate ship toddler bed online, but even I know $400 for a toddler bed is ridiculous.
And I don't know if it was pity or just to shut me up, but Dr. Miller cut my Pomalyst dose. Numbers are in good ranges but he won't completely stop it, so we don't know what would happen. Would the numbers shoot back up? Is it a durable response? A partial remission? But I'll take whatever I can get, so I am grateful for the lessening of the dosage.
So now that I'm settled, there are some events this week coming up that I hope to attend and blog about. See if I can't get this blog slightly back on track.
Saturday, September 26, 2015
I Am Awake......
.....and showered and properly medicated.
Ahead of schedule. This month's trip was so bad that I estimated that this would not happen until Sunday night. You know, in time to catch the 4th episode of "Fear The Walking Dead".
Besides Pomalyst, every other month I get an Aredia infusion. On those months, I am even more disorganized and confused. I should not try anything ambitious during that time.
This was an infusion month. And yes, I tried something ambitious. And yes, it was much harder than it needed to be.
The next infusion is November 22nd. If someone would be kind enough on November 18th as to tell me not to schedule anything else until November 25th, I would appreciate it.
My time in Virginia as more than a visitor is nearly at an end. I think my eagerness to end it, is causing these bad decisions......yeah, that's my latest excuse.
I joke about "never winning with the 50/50 questions" but really, that's very true. If I am faced with an either/or situation, I almost always blow it. This happens if the question is high stakes or of no consequence at all.
And I do a lot of "counting my chickens before they are hatched". I always have. I am constantly making plans based on things happening in a certain way. Things I have no control over. And there really are things I have no control over. I, Princess Crabby, the Empress of the Moat, she who has no equal, Princesa Malhumorada have very little control over things in real life, as opposed to what happens in my imagination. This really messes me up!
When I go to infusion it's supposed to go like this - I check in and they take my vitals, put me in an infusion room, take a couple of vials of blood and send it off for testing. They can't give you Aredia if certain things aren't stable. Plus, with a blood cancer.....there is lots of blood tests. Makes sense, right? Then the numbers come back in thirty or forty minutes and they send to the in-hospital pharmacy for the Aredia. It can't be ordered without the test results. Pharmacy sends the IV bags up, they hook it up and attach me ( I already have an IV in my hand or arm from the testing) and from that point, it takes one hundred and twenty minutes. There is a product that is faster, Zometa, but I tried it and had a crazy flu-like reaction. So, being reasonable (not my strong suit, but I can be) this process should take a little over three hours. When I have nothing to do after an appointment, it takes about three hours. But if I schedule anything for afterwards....it can take (and has taken), six or more hours. I should not plan anything for afterwards... yet I do.
Because I never learn!
Thursday, I wanted to go look at an apartment in the evening. And, I planned to fly from Boston to BWI at 5:50 am on Friday morning. I chose that flight to save money and be in DC for the train to Staunton, which only runs on Friday, Sunday & Wednesday. I wanted to hurry back out of Boston because my monthly visit there causes me to spend an inordinate amount of money. Once I actually have a place of my own to live back in Boston, this won't happen. So, in order to save, I decided this month would be a "get in/get out" month. No visits, no family time, no dinner with friends. In. Out.
Getting in was no problem.
I was scheduled for a 2pm appointment and I had scripts to fill. So I called and asked if I could be moved up and was offered 1pm. I went in that morning and picked up the prescriptions, so I could check that off the list. Usually I wander around and get lunch while the blood is being tested. This can make the process longer because sometimes I am not back when the IV bags come up. But instead I went and got lunch before I went to the appointment. I arrived, fully prepared; lunch, books, snacks, water, charger, everything so I could sit and not move, at 12:45pm for my 1pm appointment.
Is My Marine paying attention? Early and fully prepared.
I didn't leave until 5:45pm.
And I am always groggy after infusion because the majority of this time I am sitting in a geri chair, in a room that is too warm for me. So I doze. I am not a napping person. Naps don't help me and they make me....CRABBY!
Now, at this point I could have cancelled the 5:50 am Friday morning flight and stayed until Sunday when there would be another train to Staunton.
This was my "50/50" decision. And I blew it.
I didn't look at an apartment. I didn't cancel the flight. I was like a zombie at Logan, BWI and then Union Station. I was nauseous on the plane. I fell asleep last night without a proper meal or the right pills at the right times. That's why I predicted that I would not surface until Sunday.
So, don't ask me to do anything November 22nd. And don't let me plan anything for November 22nd.
Ahead of schedule. This month's trip was so bad that I estimated that this would not happen until Sunday night. You know, in time to catch the 4th episode of "Fear The Walking Dead".
Besides Pomalyst, every other month I get an Aredia infusion. On those months, I am even more disorganized and confused. I should not try anything ambitious during that time.
This was an infusion month. And yes, I tried something ambitious. And yes, it was much harder than it needed to be.
The next infusion is November 22nd. If someone would be kind enough on November 18th as to tell me not to schedule anything else until November 25th, I would appreciate it.
My time in Virginia as more than a visitor is nearly at an end. I think my eagerness to end it, is causing these bad decisions......yeah, that's my latest excuse.
I joke about "never winning with the 50/50 questions" but really, that's very true. If I am faced with an either/or situation, I almost always blow it. This happens if the question is high stakes or of no consequence at all.
And I do a lot of "counting my chickens before they are hatched". I always have. I am constantly making plans based on things happening in a certain way. Things I have no control over. And there really are things I have no control over. I, Princess Crabby, the Empress of the Moat, she who has no equal, Princesa Malhumorada have very little control over things in real life, as opposed to what happens in my imagination. This really messes me up!
When I go to infusion it's supposed to go like this - I check in and they take my vitals, put me in an infusion room, take a couple of vials of blood and send it off for testing. They can't give you Aredia if certain things aren't stable. Plus, with a blood cancer.....there is lots of blood tests. Makes sense, right? Then the numbers come back in thirty or forty minutes and they send to the in-hospital pharmacy for the Aredia. It can't be ordered without the test results. Pharmacy sends the IV bags up, they hook it up and attach me ( I already have an IV in my hand or arm from the testing) and from that point, it takes one hundred and twenty minutes. There is a product that is faster, Zometa, but I tried it and had a crazy flu-like reaction. So, being reasonable (not my strong suit, but I can be) this process should take a little over three hours. When I have nothing to do after an appointment, it takes about three hours. But if I schedule anything for afterwards....it can take (and has taken), six or more hours. I should not plan anything for afterwards... yet I do.
Because I never learn!
Thursday, I wanted to go look at an apartment in the evening. And, I planned to fly from Boston to BWI at 5:50 am on Friday morning. I chose that flight to save money and be in DC for the train to Staunton, which only runs on Friday, Sunday & Wednesday. I wanted to hurry back out of Boston because my monthly visit there causes me to spend an inordinate amount of money. Once I actually have a place of my own to live back in Boston, this won't happen. So, in order to save, I decided this month would be a "get in/get out" month. No visits, no family time, no dinner with friends. In. Out.
Getting in was no problem.
I was scheduled for a 2pm appointment and I had scripts to fill. So I called and asked if I could be moved up and was offered 1pm. I went in that morning and picked up the prescriptions, so I could check that off the list. Usually I wander around and get lunch while the blood is being tested. This can make the process longer because sometimes I am not back when the IV bags come up. But instead I went and got lunch before I went to the appointment. I arrived, fully prepared; lunch, books, snacks, water, charger, everything so I could sit and not move, at 12:45pm for my 1pm appointment.
Is My Marine paying attention? Early and fully prepared.
I didn't leave until 5:45pm.
And I am always groggy after infusion because the majority of this time I am sitting in a geri chair, in a room that is too warm for me. So I doze. I am not a napping person. Naps don't help me and they make me....CRABBY!
Now, at this point I could have cancelled the 5:50 am Friday morning flight and stayed until Sunday when there would be another train to Staunton.
This was my "50/50" decision. And I blew it.
I didn't look at an apartment. I didn't cancel the flight. I was like a zombie at Logan, BWI and then Union Station. I was nauseous on the plane. I fell asleep last night without a proper meal or the right pills at the right times. That's why I predicted that I would not surface until Sunday.
So, don't ask me to do anything November 22nd. And don't let me plan anything for November 22nd.
Sunday, September 13, 2015
When Was Steroid Day?
I don't know, I'm all messed up. So I guess it's today. Wasn't bad and gave me the burst of energy it sometimes does. You know, where you don't just throw a load in the washer, but you clean the washing machine.
Anyway, a couple of nights ago, I somehow missed the lyrica and of course couldn't sleep and it feels like the onset of flu. Muscle/joint pain, yada, yada. So I slept through the next day's morning meds. I think that's how I missed steroid day. And my sleep schedule slipped right into midnight to 3 pm.
And the glasses still aren't fixed. And the humidity and heat were killer. And waaahhhhhh.
But today I was up before noon. Took the steroids, The humidity broke. Whew! Just in time to prep for "Fear The Walking Dead". My Marine better be caught up, cause I'm tired of getting chastised.
Hopefully, on October 1st, my best pal from 7th grade and I are moving into a 2 bedroom together. We could have chosen from dozens of places by now, but she has two cats & wants off street parking. It's stressing her to the point where her boss is looking to find us a place. You know I don't care about parking, animals, where the laundry is, bedroom size, sharing a bathroom. So I just keep saying pick whatever makes you happy!! Although it was a bummer to pass up an apartment 5 doors down from my previous Charlestown address b/c of size. The important part is Boston & that she'll be just as good at that balance of watching me and ignoring me as Tommy is.
So I think I'll whip out the Hershey's cocoa and make something.
Anyway, a couple of nights ago, I somehow missed the lyrica and of course couldn't sleep and it feels like the onset of flu. Muscle/joint pain, yada, yada. So I slept through the next day's morning meds. I think that's how I missed steroid day. And my sleep schedule slipped right into midnight to 3 pm.
And the glasses still aren't fixed. And the humidity and heat were killer. And waaahhhhhh.
But today I was up before noon. Took the steroids, The humidity broke. Whew! Just in time to prep for "Fear The Walking Dead". My Marine better be caught up, cause I'm tired of getting chastised.
Hopefully, on October 1st, my best pal from 7th grade and I are moving into a 2 bedroom together. We could have chosen from dozens of places by now, but she has two cats & wants off street parking. It's stressing her to the point where her boss is looking to find us a place. You know I don't care about parking, animals, where the laundry is, bedroom size, sharing a bathroom. So I just keep saying pick whatever makes you happy!! Although it was a bummer to pass up an apartment 5 doors down from my previous Charlestown address b/c of size. The important part is Boston & that she'll be just as good at that balance of watching me and ignoring me as Tommy is.
So I think I'll whip out the Hershey's cocoa and make something.
Thursday, September 10, 2015
Well, Thank Goodness For Tommy
It's not like I need nursing or anything. But while I am on Pomalyst (14 nights of pills) I am clumsy and disoriented. Needless to say, accidents happen. Spills are legion. I have to put a hand on the wall when I walk from my bedroom to the bathroom here in Virginia. The hall is a converted porch and there is a slight pitch. On Pomalyst, this might hall might as well be a carnival fun house.
So the other day I was walking to the post office to mail some silly little things to my grandson. It is still hot here (really, even to the natives) and madly humid. As I was walking I wanted to change from my glasses to sunglasses. Unfortunately, the humidity combined with my butterfingers.....the glasses hit the ground and then I stepped on then when I tried to catch them. I was actually lucky that I didn't hit the ground.
How big a problem is this? Well, I have always been a bit of a hoarder. That means the last two times I lost/broke glasses, I just pulled out an old pair. Always meaning to get new ones....but I haven't.
I can't even believe how much of a pain in the ass this. I have one undamaged lens, so I can watch TV if I sit still and balance them carefully. But I can't walk around with them.
Yesterday, not only did Tom have to drive me on my errands....he had to walk me through the aisles of the supermarket. I couldn't read any signs. I couldn't make out anything more than .a few feet away.
If not for Thomas Owen, how would I have found these delicious Mallo-Cups???? Thanks Tommy.
So the other day I was walking to the post office to mail some silly little things to my grandson. It is still hot here (really, even to the natives) and madly humid. As I was walking I wanted to change from my glasses to sunglasses. Unfortunately, the humidity combined with my butterfingers.....the glasses hit the ground and then I stepped on then when I tried to catch them. I was actually lucky that I didn't hit the ground.
How big a problem is this? Well, I have always been a bit of a hoarder. That means the last two times I lost/broke glasses, I just pulled out an old pair. Always meaning to get new ones....but I haven't.
I can't even believe how much of a pain in the ass this. I have one undamaged lens, so I can watch TV if I sit still and balance them carefully. But I can't walk around with them.
Yesterday, not only did Tom have to drive me on my errands....he had to walk me through the aisles of the supermarket. I couldn't read any signs. I couldn't make out anything more than .a few feet away.
If not for Thomas Owen, how would I have found these delicious Mallo-Cups???? Thanks Tommy.
Saturday, September 05, 2015
Gypsy Hill Park Pool Breaks My Heart Again!
So, as I explained in the post above, sometimes the City of Staunton changes things and doesn't post it on the website. They have a website. It's a fairly comprehensive website. I have used it to find out lots of useful things. But they don't seem to update it,
As far as the pool goes, they have a dry erase sandwich board for that. so....for someone who has no car and takes the trolley, this can suck. Cause you don't just walk to the pool. I did that when I was young and I ran up to the Clougherty Pool in the Doherty Park at the top of Bunkah. Here. Have some history from the always fabulous Helen O'Neil. Grab a towel and some change for the ice cream truck "Bye Mum!" and I was off till I was waterlogged or more hungry than an ice cream could satisfy.
But now? Towels, book, water, snack, sunscreen, sunglasses, hat...and the list goes on.
I set my alarm, did my morning chores, packed my bag and Tom drove me to the pool. I could walk it, it's just under a mile and a half. But *cue whiny voice* it's hhhhhooottttt and I have a bbbbaaagg.
As we pull up I say to Tom "Where are the people? Why is the pool cover on?" Tom puts on the "Down South" voice and tells me "Ah don't know".
I get out of the car and read the sandwich board "Pool closed for season due to lack of guard".
HELLO??? I was a lifeguard. Sure it was literally twenty years ago. And kids in Rocky Nook said I was the meanest lifeguard evah. But they didn't even ask.
So now I am sitting in front of the AC, pouting. I can't even do what we did when I was little and sit in the yard with the garden hose. Tom took it and all the yard tools to go help a friend at their new place.
As far as the pool goes, they have a dry erase sandwich board for that. so....for someone who has no car and takes the trolley, this can suck. Cause you don't just walk to the pool. I did that when I was young and I ran up to the Clougherty Pool in the Doherty Park at the top of Bunkah. Here. Have some history from the always fabulous Helen O'Neil. Grab a towel and some change for the ice cream truck "Bye Mum!" and I was off till I was waterlogged or more hungry than an ice cream could satisfy.
But now? Towels, book, water, snack, sunscreen, sunglasses, hat...and the list goes on.
I set my alarm, did my morning chores, packed my bag and Tom drove me to the pool. I could walk it, it's just under a mile and a half. But *cue whiny voice* it's hhhhhooottttt and I have a bbbbaaagg.
As we pull up I say to Tom "Where are the people? Why is the pool cover on?" Tom puts on the "Down South" voice and tells me "Ah don't know".
I get out of the car and read the sandwich board "Pool closed for season due to lack of guard".
HELLO??? I was a lifeguard. Sure it was literally twenty years ago. And kids in Rocky Nook said I was the meanest lifeguard evah. But they didn't even ask.
So now I am sitting in front of the AC, pouting. I can't even do what we did when I was little and sit in the yard with the garden hose. Tom took it and all the yard tools to go help a friend at their new place.
Monday, August 24, 2015
Curses! Foiled Again!
There is a public pool in Staunton. It's in Gypsy Hill Park and it's very nice. Lots of little kids, but they stay in the shallow end near the slide or sit on the edges of the pool. Long story short, the deep end is never crowded.
I got to this pool late in the season because someone told me it wasn't nice. That's my own fault for not checking it out myself.
The official end of summer is upon us as Labor Day approaches, but that doesn't have a lot to do with the weather. But those are the rules and the pool will close for the season on Tuesday the 8th. So of course I want to take advantage of all the opportunities left, right? So I rush through the things I have to do today, which of course means they all took longer than usual, right? The hurrier I go, the behinder I get.
But I make it there by 4 and it closes at 6.
Yeah, not today. And not tomorrow. Because even though I read the signs and checked the website.....there is apparently a super secret rule. Once school starts, the pool is closed during the week.
It's ok, I leave for Boston Wednesday. We don't close the ocean.
I got to this pool late in the season because someone told me it wasn't nice. That's my own fault for not checking it out myself.
The official end of summer is upon us as Labor Day approaches, but that doesn't have a lot to do with the weather. But those are the rules and the pool will close for the season on Tuesday the 8th. So of course I want to take advantage of all the opportunities left, right? So I rush through the things I have to do today, which of course means they all took longer than usual, right? The hurrier I go, the behinder I get.
But I make it there by 4 and it closes at 6.
It's ok, I leave for Boston Wednesday. We don't close the ocean.
Monday, August 17, 2015
Read This With Pepto Bismol Handy
So you know I was already super aware of "The Weather Underground" and shitty Bill Ayers and Bernadine Dohrn. I don't get how more people aren't outraged about the crap they pulled and how they smugly walked away from it. I am constantly agog when people buy the Ayers/Dohrn malarkey that dismisses any talk of their actual & attempted violence and rewrites their past through rose-colored, we-were-trying-to-save-the-world lenses.
And I am well versed in 60s, 70s & 80s history. I lived through it, I watched Huntley & Brinkley, I read various newspapers. Later, I was interested in history, so my reading tended toward that area.
But somehow I missed a bigger picture. Maybe I wasn't ready to see it as a whole. I knew, as I said, about Weather Underground. And I knew about the Black Liberation Army, the Symbionese Liberation Army, the FALN; I could tell you who Party Hearst, Joanne Chesimard, Eldridge Cleaver and Malcolm X were.
But here in this book, Burroughs lays out all of these groups and people and their actions chronologically and in depth. And like someone vividly bringing back the circumstances of a terrible wound that is scabbed over, Burroughs made me feel outrage.
I highly recommend this book. It's interesting. It's well written. And it remembers people who should be remembered, the victims of these terrorists. The groups weren't protesting, they were destroying & murdering.
Saturday, August 15, 2015
Yeah, I Know.....
I never thought these words would come out of my mouth either.
"Too much."
These "Brownie Batter Oreos" are just too much! It's not like licking the spoon, it's like eating the bowl and then feeling queasy.
Thursday, August 13, 2015
The Guy Who Lives Above Tom Just Stepped On My Last Nerve
It's official, I hate the clown who lives above Tom. When my son moved in eight months ago, the first thing we both noticed was that the people upstairs wore heeled shoes day and night. Sooooo ignorant & thoughtless. I tried to get a conversation started about it (nicely, because Tom would kill me otherwise) but the guy would always go off on a tangent. And I only understood every other word accent, missing teeth, idioms. And I found out stuff I didn't want to know - like how unreasonable the landlord was to beef about him stacking cardboard boxes on top of his heater. Or that he didn't use the heater because he used electric space heaters he found at the dump.
He also has a junk heap on the porch. This includes a broken cooler left behind by the previous tenant (He hoped to sell it for $5.00) He smokes beside his front door, which renders our window unusable. And of course, it's just gross at that end of the porch. He also appropriated the welcome rug left by the previous tenant and put it at the edge of the porch. So it's just rotting the wood since it gets soaked everytime it rains.
After a talk with the very, very nice guy downstairs, I realize this was a problem for the previous tenant as well. Plus, as is obvious to me, this conversation confirms the three upstairs (husband, wife & daughter) are special. Great.
So one day I'm on the porch and he comes out to smoke. I say in a very nice, mild tone "Hey, has anyone ever talked to you about wearing outdoor shoes upstairs?" He looks away, no answer. I wait. Then I say "Did you hear me or have I upset you?" He got up and went inside. Since then I have completely ignored him. He tried to make nice, offered to help me carry something. Is that a game? Ignore me and then play good neighbor? No.
Then today there is a water problem. It takes me a while to figure it out. There is some kind of blockage just below me. It caused my washer not to drain. I did all the checking, but slowly cause it's day 2 of Pomalyst. Constant mopping.
Ok, it wasn't this bad.
Then I am standing in front of the tub, everything cleaned when the washer upstairs begins to drain. The tub fills. The toilet bowl fills and overflows. The U shape pipe behind the washer gushes. I throw down towels and run out to the upstairs neighbors door. Knocking. Knocking. Banging. Finally, he answers. I tell him to shut off his washer. That it's flooding my everything. I tell him I am calling the building's maintenance guy.
I go back in to Tom's apartment to make the call and mop up this new mess. I can tell this stupid ass didn't shut his washer off. He let it finish the cycle.
Now this guy couldn't know what was happening. I'm not unreasonable. But he does laundry all damn day, every day. From 9:30am this morning (it woke me up) and it was still going at 5pm. How? There are only 3 of them? Are they taking in laundry to supplement their income?
Was any of this which has me crazed? Close but no.
The cardinal sin was this - when he finally opened the door and I told him to shut off the washer, he looked behind me. What. The. Fuck? Do NOT be afraid of who might be backing me up.
He also has a junk heap on the porch. This includes a broken cooler left behind by the previous tenant (He hoped to sell it for $5.00) He smokes beside his front door, which renders our window unusable. And of course, it's just gross at that end of the porch. He also appropriated the welcome rug left by the previous tenant and put it at the edge of the porch. So it's just rotting the wood since it gets soaked everytime it rains.
After a talk with the very, very nice guy downstairs, I realize this was a problem for the previous tenant as well. Plus, as is obvious to me, this conversation confirms the three upstairs (husband, wife & daughter) are special. Great.
So one day I'm on the porch and he comes out to smoke. I say in a very nice, mild tone "Hey, has anyone ever talked to you about wearing outdoor shoes upstairs?" He looks away, no answer. I wait. Then I say "Did you hear me or have I upset you?" He got up and went inside. Since then I have completely ignored him. He tried to make nice, offered to help me carry something. Is that a game? Ignore me and then play good neighbor? No.
Then today there is a water problem. It takes me a while to figure it out. There is some kind of blockage just below me. It caused my washer not to drain. I did all the checking, but slowly cause it's day 2 of Pomalyst. Constant mopping.
Then I am standing in front of the tub, everything cleaned when the washer upstairs begins to drain. The tub fills. The toilet bowl fills and overflows. The U shape pipe behind the washer gushes. I throw down towels and run out to the upstairs neighbors door. Knocking. Knocking. Banging. Finally, he answers. I tell him to shut off his washer. That it's flooding my everything. I tell him I am calling the building's maintenance guy.
I go back in to Tom's apartment to make the call and mop up this new mess. I can tell this stupid ass didn't shut his washer off. He let it finish the cycle.
Now this guy couldn't know what was happening. I'm not unreasonable. But he does laundry all damn day, every day. From 9:30am this morning (it woke me up) and it was still going at 5pm. How? There are only 3 of them? Are they taking in laundry to supplement their income?
Was any of this which has me crazed? Close but no.
The cardinal sin was this - when he finally opened the door and I told him to shut off the washer, he looked behind me. What. The. Fuck? Do NOT be afraid of who might be backing me up.
Thursday, July 09, 2015
Best Steroid Day Ever!
With Pomalyst, as with Revlimid, there is an accompanying low dose dexamethasone. A steroid. Not the "up your batting average" steroid, but a muscle wasting, insanity-inducing steroid. I have had bad steroid days where I was weak and homicidal. I have had days where I get a burst of manic energy, they aren't good, but they are productive. I have had headache like someone is squeezing my head in a vice and combing my hair hurts. But I've never had a good one.
Now I have read that sugar exacerbates these symptoms. And there have been several times where I have successfully given up sugar for periods of time. But never during chemo. I don't really drink. I haven't done an illegal drug in over three decades and even those were nothing to speak of. I don't smoke.
No, sugar is my drug. Chocolate, but any candy will do except circus peanuts - that's Muriel's thing. Cake, pie, cookies, brownies, pastry, fruit....name a source, I'm an addict. As a matter of fact, in the most stressful times in my life, I pour Plain M&M's into a glass of regular Coca Cola and stir. It's like maintaining sugar.
So while I am long past panic about Multiple Myeloma, no one can be serene about chemo. No one can listen to the precautions and warnings and side effects and the be blase about popping a pill in your mouth that comes out of wrappings that say "Caution -Poison".
Therefore, preparation for my chemo days (7 or 10 or 14 or 21) always includes sugar. Sometimes I give it a half hearted effort and it's fruit and vanilla wafers or loaded salads - natural sugars. But a sugar is a sugar.
And I am the queen of "next month" or "Monday is a good day to start". Actually that one cracks me up. I no longer work, sometimes I don't ever know it's Monday!
And this month didn't start out special. July 1st; toast with eggs, big salad with onions, carrots, tomatoes & dressing; cheeseburger with ketchup on a bun and red licorice whips. Two hours after the last thing I ate, my first Pomalyst. July 2nd was the first steroid. They are taken on the second and eighth day in the morning (or what passes for it in my world) with food. It was a non-descript day, I laid around, no energy burst, but no rage either.
Then for some reason the next day, I just decided to do Atkins. I have an on & off relationship with Atkins. In 2003, I lost 92 pounds. I kept the bulk of that off for years. But like the IgA numbers, that number has been creeping up. I haven't really cared.
Anyway it's been surprisingly easy. I don't see anything that tempts me, Tom & I don't have the same taste in snacks. There isn't as much time to think about it, Pomalyst makes it hard to get to sleep, but once I get there.....I'm down for a minimum of ten hours. Now that I watch almost everything on the DVR or the Amazon Fire Stick - no commercials to make me pine for something. I have no go-to-dinner friends here as opposed to Boston, where it's a never ending cycle of restaurants and take-out.
So last night was the 7th Pomalyst. Dead center of the cycle. Making this morning the 2nd steroid. And the 7th day on Atkins. For non-Atkins people seven days doesn't sound like much, but it means you are in the zone; peeing purple, past the sugar withdrawal. Now it's just a matter of not forgetting and eating something without tthinking.
I went to the Town pool in Gypsy Hill Park. I packed frozen water & chopped up steak. I have a new Jack Reacher book from the library. The pool is much nicer than I had been told. The shallow end was crowded, but the other end is fairly empty and 13 feet deep. No one really swims. They sit on the edge & dangle their feet. They jump in and cling to the edge. So it was basically all for me.
I swam. I read. I ate & drank. I sunned myself and relaxed.
Only one, steroid symptom - a tightness in my throat when I walked fast or uphill. That's it. No fatigue. No rage. No weakness. No vice like headache. Just relaxation and enjoyment.
If it's the sugar, I've got a lot of thinking to do.
Now I have read that sugar exacerbates these symptoms. And there have been several times where I have successfully given up sugar for periods of time. But never during chemo. I don't really drink. I haven't done an illegal drug in over three decades and even those were nothing to speak of. I don't smoke.
No, sugar is my drug. Chocolate, but any candy will do except circus peanuts - that's Muriel's thing. Cake, pie, cookies, brownies, pastry, fruit....name a source, I'm an addict. As a matter of fact, in the most stressful times in my life, I pour Plain M&M's into a glass of regular Coca Cola and stir. It's like maintaining sugar.
So while I am long past panic about Multiple Myeloma, no one can be serene about chemo. No one can listen to the precautions and warnings and side effects and the be blase about popping a pill in your mouth that comes out of wrappings that say "Caution -Poison".
Therefore, preparation for my chemo days (7 or 10 or 14 or 21) always includes sugar. Sometimes I give it a half hearted effort and it's fruit and vanilla wafers or loaded salads - natural sugars. But a sugar is a sugar.
And I am the queen of "next month" or "Monday is a good day to start". Actually that one cracks me up. I no longer work, sometimes I don't ever know it's Monday!
And this month didn't start out special. July 1st; toast with eggs, big salad with onions, carrots, tomatoes & dressing; cheeseburger with ketchup on a bun and red licorice whips. Two hours after the last thing I ate, my first Pomalyst. July 2nd was the first steroid. They are taken on the second and eighth day in the morning (or what passes for it in my world) with food. It was a non-descript day, I laid around, no energy burst, but no rage either.
Then for some reason the next day, I just decided to do Atkins. I have an on & off relationship with Atkins. In 2003, I lost 92 pounds. I kept the bulk of that off for years. But like the IgA numbers, that number has been creeping up. I haven't really cared.
Anyway it's been surprisingly easy. I don't see anything that tempts me, Tom & I don't have the same taste in snacks. There isn't as much time to think about it, Pomalyst makes it hard to get to sleep, but once I get there.....I'm down for a minimum of ten hours. Now that I watch almost everything on the DVR or the Amazon Fire Stick - no commercials to make me pine for something. I have no go-to-dinner friends here as opposed to Boston, where it's a never ending cycle of restaurants and take-out.
So last night was the 7th Pomalyst. Dead center of the cycle. Making this morning the 2nd steroid. And the 7th day on Atkins. For non-Atkins people seven days doesn't sound like much, but it means you are in the zone; peeing purple, past the sugar withdrawal. Now it's just a matter of not forgetting and eating something without tthinking.
I went to the Town pool in Gypsy Hill Park. I packed frozen water & chopped up steak. I have a new Jack Reacher book from the library. The pool is much nicer than I had been told. The shallow end was crowded, but the other end is fairly empty and 13 feet deep. No one really swims. They sit on the edge & dangle their feet. They jump in and cling to the edge. So it was basically all for me.
I swam. I read. I ate & drank. I sunned myself and relaxed.
Only one, steroid symptom - a tightness in my throat when I walked fast or uphill. That's it. No fatigue. No rage. No weakness. No vice like headache. Just relaxation and enjoyment.
If it's the sugar, I've got a lot of thinking to do.
Tuesday, June 30, 2015
Good News....Bad News..
So the good news is actually very good. It overwhelms the bad news.
As of May 28, 2015, after 6 months of Pomalyst, my number has slipped just into the normal range. A normal, healthy person has 50/60 to 350/400 parts per deciliter of IgA. Serum levels of IgM, IgG, and IgA vary with age (most everyone's levels rise with age), gender (higher in men than in women) and race (higher in African Americans the white). The Ig stands for immunoglobulin. And here's a useless factoid, in a map of prevalence, the two countries with the highest rates? Iraq and the Democratic Republic of Congo. Go figure.
My number diagnosis in July, 2008 was 5850. We've been up and down and over and out.....to quote Old Blue Eyes. But on May 28, 2015, it was 349.
Bad news? Dr. Miller says I can't stop taking Pomalyst. I'm pretty bummed. It's a quality of life issue. Down for the count for 14 days, outright homicidal for at least 2 of those. Recovering for 7 or so with recovery being harder with each month. Then "living" for 7 to 9. Does that seem whiny and selfish?
How 'bout this? It's making my hair fall out. Dr. Miller seemed surprised. He asked if I was sure. Lol. Yeah, I'm sure. I remembered that it fell out with Cytoxan, but as it turns out, I also had hair loss with Revlimid in 2010. I looked it up in this very blog earlier today.
So tomorrow night I start Pomalyst again. It will be the 8th month.
As of May 28, 2015, after 6 months of Pomalyst, my number has slipped just into the normal range. A normal, healthy person has 50/60 to 350/400 parts per deciliter of IgA. Serum levels of IgM, IgG, and IgA vary with age (most everyone's levels rise with age), gender (higher in men than in women) and race (higher in African Americans the white). The Ig stands for immunoglobulin. And here's a useless factoid, in a map of prevalence, the two countries with the highest rates? Iraq and the Democratic Republic of Congo. Go figure.
My number diagnosis in July, 2008 was 5850. We've been up and down and over and out.....to quote Old Blue Eyes. But on May 28, 2015, it was 349.
Bad news? Dr. Miller says I can't stop taking Pomalyst. I'm pretty bummed. It's a quality of life issue. Down for the count for 14 days, outright homicidal for at least 2 of those. Recovering for 7 or so with recovery being harder with each month. Then "living" for 7 to 9. Does that seem whiny and selfish?
How 'bout this? It's making my hair fall out. Dr. Miller seemed surprised. He asked if I was sure. Lol. Yeah, I'm sure. I remembered that it fell out with Cytoxan, but as it turns out, I also had hair loss with Revlimid in 2010. I looked it up in this very blog earlier today.
So tomorrow night I start Pomalyst again. It will be the 8th month.
Sunday, May 24, 2015
As Frankie Reminded Me......
...it's good luck. Yeah if you and Mama Kelley say so.
While out for a short walk around the hotel's immediate area, I noticed a drug store. I'd been paying $2.25 a pop for bottled water & figured grabbing some in the store would save a few bucks. So I grab a 6 pack for $3.45 and I'm happy. As I leave and walk through the covered parking lot,
I feel something on my head.
I pray it's condensation.
I walk back to the hotel like a beauty queen hoping nothing slides. I get to my room and tip my head to the sink. My sunglasses fall into the sink.
Not condensation.
So I got back in the shower, two hours after the first shower and wash my hair 27 times.
I was texting Frank a little later and shared my story in hope of garnering some sympathy.
"It's good luck." Was all I got.
While out for a short walk around the hotel's immediate area, I noticed a drug store. I'd been paying $2.25 a pop for bottled water & figured grabbing some in the store would save a few bucks. So I grab a 6 pack for $3.45 and I'm happy. As I leave and walk through the covered parking lot,
I feel something on my head.
I pray it's condensation.
I walk back to the hotel like a beauty queen hoping nothing slides. I get to my room and tip my head to the sink. My sunglasses fall into the sink.
Not condensation.
So I got back in the shower, two hours after the first shower and wash my hair 27 times.
I was texting Frank a little later and shared my story in hope of garnering some sympathy.
"It's good luck." Was all I got.
Monday, May 18, 2015
USS Constitution Restoration
Yesterday, down in The Charlestown Navy Yard, they flooded Dry Dock #1. This was in preparation for an extensive restoration of Old Ironsides.
You can watch this amazing project as it happens by following along at "Restoring an Icon". Information, pics & more are available from the site. Contributors include USA Constitution's official account; the Naval History & Heritage Command Detachment Boston; USS Constitution Museum & Boston National Historical Park.
Bookmark this link!!
You can watch this amazing project as it happens by following along at "Restoring an Icon". Information, pics & more are available from the site. Contributors include USA Constitution's official account; the Naval History & Heritage Command Detachment Boston; USS Constitution Museum & Boston National Historical Park.
Bookmark this link!!
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