Twelve years ago I was diagnosed with Multiple Myeloma. Nothing was particularly wrong. Numbers from my yearly physical were pointing toward anemia & a neoplasm. So there were tests & biopsies & MRIs. Within a few weeks they had it all nailed down. Stage IIIA MM subtype IgA lambda. IgA was known to be refractory, which means difficult to treat, and known to have poor outcomes.
Five years was the prognosis.
And refractory is just what I am. Front-line treatments did not produce a sustained response.
My stem cell transplant produced a mere 22 month remission.
Pomalyst caused other problems, so I had to come off.
I'm slow, a little dull, prone to infection & weak.
But thanks to my fabulous hematological oncologist at Tufts/NEMC, Dr Kenneth Miller & everyone on South 8......
Here I am, seven years past my "expiration date". Grateful every day.
Thursday, July 02, 2020
Tuesday, June 23, 2020
It Seems I Only Come Here To Beef
So I'll post something pleasant.
Tomorrow evening, June 24th, the Massachusetts Historical Society is hosting an online event.
Tomorrow evening, June 24th, the Massachusetts Historical Society is hosting an online event.
Mary Beth Norton will give us a preview of her new book, a narrative history of the “long 
year” of 1774, or the months from December 1773 to April 1775, which have tended to be overlooked by historians who focus instead on the war for independence. But John Adams, who lived through that era, declared that the true revolution took place in the minds of the people before a shot was fired at Lexington. The year 1774, Norton argues, was when that revolution occurred.
year” of 1774, or the months from December 1773 to April 1775, which have tended to be overlooked by historians who focus instead on the war for independence. But John Adams, who lived through that era, declared that the true revolution took place in the minds of the people before a shot was fired at Lexington. The year 1774, Norton argues, was when that revolution occurred.
Sunday, July 28, 2019
Once Again, July 28th Is The Shittiest Day Of The Year
Without a doubt.
And once again, I haven't planned it well. That's because planning requires thinking about it & I don't want to.
I want to be somewhere far away, where no one knows me. Where I can get room service so I don't have to see or talk to anyone.
Instead I am in Staunton wrapping up my part of the move. I'm trying to be brutal & purge some stuff. But today isn't the day for that.
Yesterday I was sweeping my room and moved Frank's ashes to the head of my bed. Last night when I got in bed, they were still there. I left them. Frank & I shared a bed more times than I can count.
Frank is never gone from me.
And once again, I haven't planned it well. That's because planning requires thinking about it & I don't want to.
I want to be somewhere far away, where no one knows me. Where I can get room service so I don't have to see or talk to anyone.
Instead I am in Staunton wrapping up my part of the move. I'm trying to be brutal & purge some stuff. But today isn't the day for that.
Yesterday I was sweeping my room and moved Frank's ashes to the head of my bed. Last night when I got in bed, they were still there. I left them. Frank & I shared a bed more times than I can count.
Frank is never gone from me.
Friday, June 28, 2019
50/50 Questions
I get these wrong 95% of the time.
Made an eye exam appointment down here in Tom's neck of the woods because I lost my glasses. I get there on time -yea me! - but they don't take Medicare or Blue Cross. Huh?
Fine. I pick up 6 things at Walmart. But I miss the bus by a few minutes & there are no cars available on Uber.
Guess I'll walk. I forgot my sunglasses & the road back to Tom's place is like the surface of the sun.
Then a rainstorm blows in. The temperature drops & it feels like Heaven. But I am wearing sandals which are slippery when wet, so I have to walk slow & careful.
I guess the important part is we have toilet paper.
Made an eye exam appointment down here in Tom's neck of the woods because I lost my glasses. I get there on time -yea me! - but they don't take Medicare or Blue Cross. Huh?
Fine. I pick up 6 things at Walmart. But I miss the bus by a few minutes & there are no cars available on Uber.
Guess I'll walk. I forgot my sunglasses & the road back to Tom's place is like the surface of the sun.
Then a rainstorm blows in. The temperature drops & it feels like Heaven. But I am wearing sandals which are slippery when wet, so I have to walk slow & careful.
I guess the important part is we have toilet paper.
Tuesday, June 04, 2019
Whoosh! An Enormous Sigh of Relief!
In more cases than one cares to contemplate, a Multiple Myeloma patient is rolling along when kidney damage requires dialysis & shortly (less than a year) after that begins, the patient is dead.
I was originally given five years. Not by Dr. Miller. He would never answer that question. No doctor should unless it is truly necessary. The science is changing too fast.
So instead, I am a month away from the 6th anniversary of my expiration date.
And I've been "rolling along"..... Until last week when I quickly dropped off a cliff. By the time I was admitted on Saturday the 25th I was in complete renal failure. The word one doctor used was "catastrophic". On Memorial Day Weekend. Which meant no one was on their office.
And I was in Virginia.
There was not enough urine to scrape up to test. I was at zero output. I was trying unsuccessfully to answer questions. Fortunately Tufts emails you lab results etc. After 8 tries at my phone password I showed them completely opposite labs from May 16th. How could I crash so fast, so completely? What had I changed, taken, done? The nurse who inserted the cath was insistent that she had placed it correctly and she had. There were ultrasounds & scans & blood draws & bags-o-fluid & two days of dialysis which would have scared the piss outta me - if I had any. Through miscommunication I got myself labeled at risk for falls. Not that I was ready for a high wire - I should sometimes just answer the question & not be a smartass. My Marine specifically said "Don't be an asshole." I relayed a short back and forth to which he replied "Now that is being an asshole." Shrug.
I looked and felt like the StayPuft marshmallow man. But finally after 3 days I gave up a few ccs of "output" for testing.
My dear, dear friend Mary Ripley, the anti-Road Warrior hopped in a car & drove from Annapolis to Staunton to my utter astonishment. I was moved to tears. Relieved for many reasons, not the least of which was support for my son Tom. Tom, while he was very afraid, came through like a trooper and showed why he was an excellent pick as caregiver.
Oh and I must roll it back to the trip to the hospital to give a shout out to my ex's wife Michelle. She drove us & we got to ride her coattails as a nurse who had previously worked at Augusta Medical & called ahead. Best part? They asked her relationship to me, I froze. How to.. and she just jumps in "This is my husband's ex-wife." I luckily had enough moisture left to allow a big snorting laugh. Thank you Michelle for the ride....and the ride.
So now we are at Wednesday the 29th and Mary is headed back to Annapolis & we are just saying our goodbyes when there is a knock on the door. A young man pushing an empty wheelchair to take me to my kidney scan. Surprise! I look at Mary assuming I have forgotten something but she shakes her head. We are supposed to be sharing her brain. So she leaves and I settle in for a ride. When we arrive I ask the tech "Are you expecting me?" The answer is affirmative so I get up & onto the scan bed.
Back to the room and not 15 minutes later a doctor I don't recognize says he saw 3 kidney stones and Thursday morning he will "flick" (accompanying hand gesture) them out. I am gobsmacked. I have had one kidney stone in my life. It was a few years ago here in Virginia. My medical frame of reference for a kidney stone is Kramer in Seinfeld and that is not what I am experiencing. But ok. I am NPO after midnight in anticipation of early morning procedure.
Now I know I should not be discussing too specifically my prescriptions. But I am on a pain management system to deal with the irreversible Multiple Myeloma damage. As well as the unlikely-to-change nerve damage caused by chemo. So there can be no pills with no water. And there should be food since otherwise they will come right back up. But by 8am I gratefully risk choking & upchucking. What can I do? I've already bitten my nails to the quick. I am contemplating going rogue. I would be stupid to not have at least one hidden 💊. Lol.
Every knock on the door I ask "Are you here to take me to surgery?". They address my pain but now I have a headache from hunger. After not eating or drinking properly for over a week, my stomach has shrunk and I can't afford to pass up a nibble. Not that I have an appetite per se, I have been playing with every dish placed in front of me.
Finally at 3pm a nurse comes in to get me. I shove everything into my bag & throw it in their closet, ready to roll. But like my Dad at the beginning of every car trip, Liliana my nurse tell me to go to the bathroom (after overwhelming me with fluids, I was outputting). So I went to the bathroom & came out to almost jump on the bed.
Down to surgery. Short wait. Into the operating room. I am asked if I would like a warmed blanket. ? I say "Who. Are. You. Talking. To?" Warmed blanket. Anyway, anesthesiologist describes what will happen and just like he said - IV felt warm and BANG, I was gone.
Now a quick word. The pain management I shouldn't talk about - I don't get anything except pain relief. They are just jumped up aspirin that make me nervous when I have to pick them up from the pharmacy. But the word I'm talking about is propofol. Drugs are bad. Don't do them unless the doctor, a legit doctor, prescribes them. But *IF* you are being wheeled into the operating room & they say "We're going to give you some propofol." Say "Yes, please". The post-op nurse is talking to me from far away & asks me to open my eyes. I am astonished to be back at the hospital. The nurse asks what I see & I say "I'm back in my bed." and she starts laughing. I have never experienced anything like that in my life. I can't explain it, but I have never felt so happy and comforted. And the dream didn't exactly end, but the real world bled in from the edges and slowly overwhelmed the dream.
Anyway, it's dangerous and that's only like my second time "under". I had my tonsils out at 5. I don't remember much. And my children were born under a local. The transplant went through a line that was placed the previous week. So I'm not advocating it. I'm just saying I have a better understanding of Michael Jackson now.
So Thursday night I am up and drinking and "outputting" like mad. Everyone is happy and it's a great success. Once they left the room I cried for the rest of the night. That shaky crying when you see the car wreck or plane crash that you just walked away from. The whole "now that the emergency is over.....HOLY SHIT! I almost died" crying.
I told everyone I interacted with, doctors, nurses that I might not have let on how scared I was, but I knew the full implications of this episode. I told them that I knew I was standing in the middle of the road with a tractor trailer bearing down on me and they reached out and snatched me outta the way. And that I was grateful beyond my ability to express it. More than tongue could tell.
My dreams that night and to a lesser and lesser degree on successive nights were super vivid and complex and in Cinemascope. I think that was the propofol. Friday afternoon I woke up from a nap and I was all clammy. I had this deep sense of unease and hopped out of the bed sans robe & fall protocol no-skid socks. I was clutching the gown closed in the back with one hand and whipped the door open with the other, ready for ..... I don't know what. But the hallway was empty. I could hear people laughing and talking in other rooms. Clearly everyone was ok. But that was super weird too. And LOL what was I gonna do if everyone wasn't ok? One hand, no socks, no bat.
And I apologized to the two doctors I was rude to. You know from reading this blog that I am an awful snob. Boston is the Hub of the Universe, the center of the known world. I have often said that I had confidence that I would be ok because I was lucky enough to be diagnosed in Boston. So my attitude at first was "stabilize me & I will Uber 600 miles back to Tufts/NEMC". Fortunately they missed most of it because of the dry mouth & the speed with which I speak. But I still had to offer apologies, because I was awful.
But credit where credit is due. This was hard to figure out, but they did and no dialysis for me. I am back to where I was before. There is still a question of what caused this cluster of kidney stones right here, right now. And so they are still working on it. But in the meantime, there were some no harm/no foul suggestions that are easy enough to work into my life.
I was originally given five years. Not by Dr. Miller. He would never answer that question. No doctor should unless it is truly necessary. The science is changing too fast.
So instead, I am a month away from the 6th anniversary of my expiration date.
And I've been "rolling along"..... Until last week when I quickly dropped off a cliff. By the time I was admitted on Saturday the 25th I was in complete renal failure. The word one doctor used was "catastrophic". On Memorial Day Weekend. Which meant no one was on their office.
And I was in Virginia.
There was not enough urine to scrape up to test. I was at zero output. I was trying unsuccessfully to answer questions. Fortunately Tufts emails you lab results etc. After 8 tries at my phone password I showed them completely opposite labs from May 16th. How could I crash so fast, so completely? What had I changed, taken, done? The nurse who inserted the cath was insistent that she had placed it correctly and she had. There were ultrasounds & scans & blood draws & bags-o-fluid & two days of dialysis which would have scared the piss outta me - if I had any. Through miscommunication I got myself labeled at risk for falls. Not that I was ready for a high wire - I should sometimes just answer the question & not be a smartass. My Marine specifically said "Don't be an asshole." I relayed a short back and forth to which he replied "Now that is being an asshole." Shrug.
I looked and felt like the StayPuft marshmallow man. But finally after 3 days I gave up a few ccs of "output" for testing.
My dear, dear friend Mary Ripley, the anti-Road Warrior hopped in a car & drove from Annapolis to Staunton to my utter astonishment. I was moved to tears. Relieved for many reasons, not the least of which was support for my son Tom. Tom, while he was very afraid, came through like a trooper and showed why he was an excellent pick as caregiver.
Oh and I must roll it back to the trip to the hospital to give a shout out to my ex's wife Michelle. She drove us & we got to ride her coattails as a nurse who had previously worked at Augusta Medical & called ahead. Best part? They asked her relationship to me, I froze. How to.. and she just jumps in "This is my husband's ex-wife." I luckily had enough moisture left to allow a big snorting laugh. Thank you Michelle for the ride....and the ride.
So now we are at Wednesday the 29th and Mary is headed back to Annapolis & we are just saying our goodbyes when there is a knock on the door. A young man pushing an empty wheelchair to take me to my kidney scan. Surprise! I look at Mary assuming I have forgotten something but she shakes her head. We are supposed to be sharing her brain. So she leaves and I settle in for a ride. When we arrive I ask the tech "Are you expecting me?" The answer is affirmative so I get up & onto the scan bed.
Back to the room and not 15 minutes later a doctor I don't recognize says he saw 3 kidney stones and Thursday morning he will "flick" (accompanying hand gesture) them out. I am gobsmacked. I have had one kidney stone in my life. It was a few years ago here in Virginia. My medical frame of reference for a kidney stone is Kramer in Seinfeld and that is not what I am experiencing. But ok. I am NPO after midnight in anticipation of early morning procedure.
Now I know I should not be discussing too specifically my prescriptions. But I am on a pain management system to deal with the irreversible Multiple Myeloma damage. As well as the unlikely-to-change nerve damage caused by chemo. So there can be no pills with no water. And there should be food since otherwise they will come right back up. But by 8am I gratefully risk choking & upchucking. What can I do? I've already bitten my nails to the quick. I am contemplating going rogue. I would be stupid to not have at least one hidden 💊. Lol.
Every knock on the door I ask "Are you here to take me to surgery?". They address my pain but now I have a headache from hunger. After not eating or drinking properly for over a week, my stomach has shrunk and I can't afford to pass up a nibble. Not that I have an appetite per se, I have been playing with every dish placed in front of me.
Finally at 3pm a nurse comes in to get me. I shove everything into my bag & throw it in their closet, ready to roll. But like my Dad at the beginning of every car trip, Liliana my nurse tell me to go to the bathroom (after overwhelming me with fluids, I was outputting). So I went to the bathroom & came out to almost jump on the bed.
Down to surgery. Short wait. Into the operating room. I am asked if I would like a warmed blanket. ? I say "Who. Are. You. Talking. To?" Warmed blanket. Anyway, anesthesiologist describes what will happen and just like he said - IV felt warm and BANG, I was gone.
Now a quick word. The pain management I shouldn't talk about - I don't get anything except pain relief. They are just jumped up aspirin that make me nervous when I have to pick them up from the pharmacy. But the word I'm talking about is propofol. Drugs are bad. Don't do them unless the doctor, a legit doctor, prescribes them. But *IF* you are being wheeled into the operating room & they say "We're going to give you some propofol." Say "Yes, please". The post-op nurse is talking to me from far away & asks me to open my eyes. I am astonished to be back at the hospital. The nurse asks what I see & I say "I'm back in my bed." and she starts laughing. I have never experienced anything like that in my life. I can't explain it, but I have never felt so happy and comforted. And the dream didn't exactly end, but the real world bled in from the edges and slowly overwhelmed the dream.
Anyway, it's dangerous and that's only like my second time "under". I had my tonsils out at 5. I don't remember much. And my children were born under a local. The transplant went through a line that was placed the previous week. So I'm not advocating it. I'm just saying I have a better understanding of Michael Jackson now.
So Thursday night I am up and drinking and "outputting" like mad. Everyone is happy and it's a great success. Once they left the room I cried for the rest of the night. That shaky crying when you see the car wreck or plane crash that you just walked away from. The whole "now that the emergency is over.....HOLY SHIT! I almost died" crying.
I told everyone I interacted with, doctors, nurses that I might not have let on how scared I was, but I knew the full implications of this episode. I told them that I knew I was standing in the middle of the road with a tractor trailer bearing down on me and they reached out and snatched me outta the way. And that I was grateful beyond my ability to express it. More than tongue could tell.
My dreams that night and to a lesser and lesser degree on successive nights were super vivid and complex and in Cinemascope. I think that was the propofol. Friday afternoon I woke up from a nap and I was all clammy. I had this deep sense of unease and hopped out of the bed sans robe & fall protocol no-skid socks. I was clutching the gown closed in the back with one hand and whipped the door open with the other, ready for ..... I don't know what. But the hallway was empty. I could hear people laughing and talking in other rooms. Clearly everyone was ok. But that was super weird too. And LOL what was I gonna do if everyone wasn't ok? One hand, no socks, no bat.
And I apologized to the two doctors I was rude to. You know from reading this blog that I am an awful snob. Boston is the Hub of the Universe, the center of the known world. I have often said that I had confidence that I would be ok because I was lucky enough to be diagnosed in Boston. So my attitude at first was "stabilize me & I will Uber 600 miles back to Tufts/NEMC". Fortunately they missed most of it because of the dry mouth & the speed with which I speak. But I still had to offer apologies, because I was awful.
But credit where credit is due. This was hard to figure out, but they did and no dialysis for me. I am back to where I was before. There is still a question of what caused this cluster of kidney stones right here, right now. And so they are still working on it. But in the meantime, there were some no harm/no foul suggestions that are easy enough to work into my life.
Monday, May 20, 2019
Do You Read Lee Child's "Jack Reacher" Series?
I do.
I started late. I didn't read him before the movie adaptation. It seemed that there was an endless supply of books. I was wrong. Now like other fans I am waiting for the next release on October 29, 2019.
Sometimes I really like him - I mean Jack. Sometimes, not so much. There were a few books where I felt his "line" was blurring. You know what I mean - "I'd do this; but I'd never do that!" I always felt
Jack's line was pretty near mine. But he came back around. And even when I was worried, I was still a fan.
Of the 23 novels currently published, the second most recent "The Midnight Line" is far and away my favorite. When I finished it, I felt something very close to what I felt when I finished Denis Lehane's "Mystic River". I felt connected. Really connected.
With Mystic River I felt Lehane had seen something in me and was writing to me. While I have great respect for Clint Eastwood's movie making skills, I felt nothing like that with the movie. It was impossible. Eastwood isn't from Boston. You have to be from Boston to get that book. Not his fault.
With Midnight Line I fell in love with Jack Reacher. By the time I closed that book I realized that if Jack were real and I met him, I'd do anything for him. I can't recall feeling that way about any book character. And I am a big reader. Not even when I was young and easily infatuated. Even though Jack is former Army......not Navy. LOL!
I started late. I didn't read him before the movie adaptation. It seemed that there was an endless supply of books. I was wrong. Now like other fans I am waiting for the next release on October 29, 2019.
Sometimes I really like him - I mean Jack. Sometimes, not so much. There were a few books where I felt his "line" was blurring. You know what I mean - "I'd do this; but I'd never do that!" I always felt
Jack's line was pretty near mine. But he came back around. And even when I was worried, I was still a fan.
Of the 23 novels currently published, the second most recent "The Midnight Line" is far and away my favorite. When I finished it, I felt something very close to what I felt when I finished Denis Lehane's "Mystic River". I felt connected. Really connected.
With Mystic River I felt Lehane had seen something in me and was writing to me. While I have great respect for Clint Eastwood's movie making skills, I felt nothing like that with the movie. It was impossible. Eastwood isn't from Boston. You have to be from Boston to get that book. Not his fault.
With Midnight Line I fell in love with Jack Reacher. By the time I closed that book I realized that if Jack were real and I met him, I'd do anything for him. I can't recall feeling that way about any book character. And I am a big reader. Not even when I was young and easily infatuated. Even though Jack is former Army......not Navy. LOL!
Sunday, April 07, 2019
Sunday, April 7, 2019
So we are a week out from The Tough Ruck. The actual website is down or has problems, but the Facebook page is fine. So, go there, like it, and if you can, donate, attend, yada yada.
From their FB page:
"Tough Ruck, a 26.2 mile Ruck March, is a project of the Military Friends Foundation. We are proud partners with the Boston Athletic Association, National Park Service and The Trustees.
On April 14, 2019 be part of something GREATER. Join the elite group of 1000 Tough Ruckers who will be the first to earn the official 2019 Boston Marathon Medal!
***#ToughRuck2019 will take place on Sunday, April 14, 2019. Registration rates and fundraising commitment will be the same as 2018.***
We are a group of Military, First Responders, and civilians whose sole purpose is to Ruck in honor and in memory of our Fallen Service Members, Police, Firefighters and EMTs, while raising funds to support Military families in times of need. We will walk/ shuffle/ruck a 26.2 mile course on Patriots Day weekend on the battle roads of the Revolutionary War, in Concord. We will carry the names of our Fallen comrades on our rucks. Tough Ruck is a proudly hosted partnership with the Boston Athletic Association/Boston Marathon. #ToughRuck2019 #MarathonWithAMission
~~~~~~~~~~~~~~~~~
So, I'm still processing the passing of my friend Carrie. I couldn't go to the funeral. Financially, flying to Kansas City from the East Coast was prohibitive and I've had a cold for six weeks. I can't talk without coughing/gagging and peeing my pants.
But if i couldn't be there, at least I'm in a Carrie place. She attended Mary Baldwin College here in Staunton, VA and loved Wright's Dairy Rite down the street. So, I have that.
From their FB page:
"Tough Ruck, a 26.2 mile Ruck March, is a project of the Military Friends Foundation. We are proud partners with the Boston Athletic Association, National Park Service and The Trustees.
On April 14, 2019 be part of something GREATER. Join the elite group of 1000 Tough Ruckers who will be the first to earn the official 2019 Boston Marathon Medal!
***#ToughRuck2019 will take place on Sunday, April 14, 2019. Registration rates and fundraising commitment will be the same as 2018.***
We are a group of Military, First Responders, and civilians whose sole purpose is to Ruck in honor and in memory of our Fallen Service Members, Police, Firefighters and EMTs, while raising funds to support Military families in times of need. We will walk/ shuffle/ruck a 26.2 mile course on Patriots Day weekend on the battle roads of the Revolutionary War, in Concord. We will carry the names of our Fallen comrades on our rucks. Tough Ruck is a proudly hosted partnership with the Boston Athletic Association/Boston Marathon. #ToughRuck2019 #MarathonWithAMission
~~~~~~~~~~~~~~~~~
So, I'm still processing the passing of my friend Carrie. I couldn't go to the funeral. Financially, flying to Kansas City from the East Coast was prohibitive and I've had a cold for six weeks. I can't talk without coughing/gagging and peeing my pants.
But if i couldn't be there, at least I'm in a Carrie place. She attended Mary Baldwin College here in Staunton, VA and loved Wright's Dairy Rite down the street. So, I have that.
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