The morning started like any other. I picked up Roberta to go into the Hospital,
I was en route to her house when our Primary Oncologist called.
He has tumors in his brain.
Holy crap. I can barely make it to the house.
Roberta gets in the car and I start to cry. She immediately tells me not to panic, that we don't have all the information yet.
We arrive at the hospital. One of the many doctors on our team come rolling in a few minutes later.
It's in his bone marrow too.
Well - that explains the platelet issue. You see, when cancer cells invade the bone marrow, it becomes cramped. The production of plates slows and drops dramatically.
Now John is normally an exceptional platelet maker. His platelets range on the high end of normal which is hundreds of thousands.
The brain tumors are a whole other issue. He has multiple lesions on the brain. They are not confident ALL are tumors. But there is ONE large one pressing against his cerebellum. That one needs treatment and they want to do surgery ASAP.
BRAIN SURGERY? wtf?????
With each new diagnosis, I think to myself, " My heart and brain cannot take much more of this". And yet, it does.
With each new diagnosis, I think to myself, "John will lose his mind over this"
Yet we take it stride.
Later that evening his sisters come to visit. We tell them what's going on and of course, it doesn't sit well. His older sister kept insisting that I needed to bring down the hammer on him sooner than we did. I don't know if she was just meeting her brother for the first time or what. I can't force him to do anything. I know this because I tried many many many times.
Let's please remember that he did see a doctor back in February and was declared cancer free after all.....
Tuesday, March 3, 2015
Monday, March 2, 2015
Chapter 13: Sucking the marrow out of life or life out of the marrow?
A little man named Dr. Reddit arrives in the step down unit with the news that they cannot figure out why his platelets are still so low. He wants us to sign a release to do a bone marrow biopsy.
We sign it and he says he will be back shortly. They do this bedside. I have no idea what this entails but I assume it entails a doctor of a respectable age and experience.
But no. Dr. Reddit returns with a kit. Alone. He looks like he's eleven years old.
Our friend, Irene is visiting and hopping all over him about sterility. It's hysterical.
Finally, he's ready. But are we?
Having no idea what to expect, they roll john on his side. Unbearable for him to be in that position. He starts the procedure.
For those of you not in the know, this process is essentially drilling into your hip bone with a corkscrew looking device, to extract bone marrow sample in a really long needle.
John has very hard and dense bones. It took two tries and a shot of dilaudin into the IV to get this done.
I was holding his hand and never really saw the process. For which I am eternally grateful.
Irene and Jeannie come back in and we get him settled. Irene leaves. John sleeps through this.
As I write this chapter two months after it happened, I will never ever forget his screams. Agonizing screams. I pray this is the last one of these.
Chapter 14: MRI Success
It's Saturday and unlike other hospitals, this one continues to operate as if it doesn't realize it's a weekend.
I like that.
I'm not saying that other hospitals don't have doctors present during the weekend but there's a pervasive attitude that says "if it weren't for you sick people, I'd be at the beach/golf course/skiing. So take this time to rest because our techs aren't even on cell or pager" .
Not here. They come get john for his MRI. We walk through the mini city that is this place and once inside the MRI suite on the yellow line, we meet up with his PA and the anesthesiologist. They are fully staffed. As if it were a Tuesday. Jeanie and I stay until they kick us out. They tell us about 45 minutes.
We took a walk hoping to find a Reed Duane for some supplies. We did find one and I got what I needed and we walked back.
We sat in the lobby and read, drank coffee, played solitaire, read, drank coffee. An hour clicked by, we looked at each other and said " we must be waiting on transport "
At the 90 minute mark, Jeanie walked upstairs to see I'd our nurse could call in.
As soon as she rounded the corner, his techs came to get me saying he was just waking from the anesthesia. I can't wait for Jeanie and I can't call her. So I figured we will meet up en route.
I walk in and she walks in behind me.... He is overjoyed to see us BUT starts to cry because Roberta isn't here. He's missing her. He wants to call her. So I tell him that we will call her as soon as we are settled back in our room. John does love his ladies. We have a really diverse and competent trio. He picked Jeanie and Roberta specifically. He loves and trusts both implicitly and with good reason!
Transport arrives and we all head back upstairs. My husband is just beside himself. He needs rest. This was scary. But we were all a little bit relieved that it was done and over. This could have been done at the first hospital if his Oncologist wasn't so lackadaisical.
I still maintain high hopes that this will come back showing us nothing else.
I walk in and she walks in behind me.... He is overjoyed to see us BUT starts to cry because Roberta isn't here. He's missing her. He wants to call her. So I tell him that we will call her as soon as we are settled back in our room. John does love his ladies. We have a really diverse and competent trio. He picked Jeanie and Roberta specifically. He loves and trusts both implicitly and with good reason!
Transport arrives and we all head back upstairs. My husband is just beside himself. He needs rest. This was scary. But we were all a little bit relieved that it was done and over. This could have been done at the first hospital if his Oncologist wasn't so lackadaisical.
I still maintain high hopes that this will come back showing us nothing else.
Wednesday, May 21, 2014
Chapter 12: Stepping down
I awake at 7AM and realize John hasn't called.
Oh shit. I took his phone and the charger home with me. I get up and frantically call the switchboard at NYU and am put through to the room where the phone rings and rings and rings. I hang up.
I go about setting up to work from home in the morning. I am uneasy and I feel like something is wrong. I call the switchboard again and ring up to the room where the nurse answers and says "Oh yes, he's been looking for you - are you planning to visit today?" I reply that I am planning to leave around noon and she says "Well he's a little agitated. I can't tell you what to do, but sooner might be better since he's in a new place."
Of course. Epic wife fail number 2. I'm on a roll.
I call Jeanie and relay the info. She and I make a plan and she picks me up at 10 instead of 12. I am trying not to panic and be crazy, but not knowing what to expect makes me a little crazy.
The drive in is pretty uneventful. Good thing - these drives turn out to be the only down time I get. Every day and I mean every day, I am thankful to God and the universe for bringing people like Jeanie and Roberta and Irene. I wouldn't have made it this far without them.
Jeanie drives us in every day. She stays with me there for 8-10 hours. She is my other set of eyes and ears. The few times she was unable to ( dear lord she HAS A FAMILY OF HER OWN!!! - what.), Roberta came in with me. It's just a blessing to not go in there by myself. I can't absorb all that gets said by the nurses, nurse practitioners, aids, doctors, surgeons, residents. It's mind blowing.
We get in there and realize that he has the most exquisite view of the East River EVER. Right next to the 34th street helipad.
He is so happy I am there. He can't remember my name. But he knows I am his wife. It's a little unsettling in the beginning as he continues to call me by his sister's name. He can't remember certain words. The remote for example. That was now referred to as his "tag". It started to become a kind of code that needed breaking. Not being really good at that sort of thing, I was guessing at most of it.
The one smart thing I did, however, was respond to being called by his sister's name with "She's not here now honey. Do you want me to call her?". He would look at me and insist and I would continue to respond the same way. It didn't take long for him to recall my name. I would ask him regularly. "Whats my name?" and he would start to answer with his sister's and then stop, think and say mine.
I was panicked that this was cancer related. I was assured that indeed this was electrolyte related. As the balance improved over time, so did the recall and the memory.
This unit was fantastic. Four beds. 1 nurse at all times. The cream of the crop. They were like stepford nurses with personalities. He was never late on meds. Ever. I didn't have to start asking 45 minutes ahead to get them in him. I didn't have to constantly chase someone down due to an occluded IV line. My job was to sit there and be the reassuring presence and for Jeanie and I to speak with the powers that be.
That day I left him with his phone and a charger so he could call as he didn't have a phone in that room. A nice flat panel TV to use his "tag" with - but no phone. The menu every day was amazing - you could order everything on it - and they would bring it. If it wasn't on there - you could write it in and they would do their best. Food wasn't bad either - for a hospital.
His room mates were in interesting and eclectic group. We had the woman across from us, Clarissa, who would whine in a feeble voice, "Ow you're hurting me" every time they administered a specific IV drug. The Orthodox elderly gentleman next to us would do battle with the nurses over whether the day was Thursday or Shabbos. And if it was Shabbos - our nurse needed to go home and cook for her husband. As a matter of fact - he wanted a male nurse because women belonged in the home. That went on for days.
That first night as we were getting ready to leave, John yells at me that he needed the tag on the wall to be where it was yesterday.
It's 10PM. Tag is remote. I got that part.
Remote on the wall? to be where it was yesterday? Two problems.
1, There's no remote on the wall or anything that could be construed as a remote and 2. we weren't here yesterday.
Completely at a loss, I maneuver his bed to a more comfortable position and eventually he calms down and goes to sleep.
We leave and were about half way home when it hit me....
The tag on the wall are the bed controls on the inner "wall" of the bed panel.
He wanted the bed set to a level that he had been at earlier in the day.
Thankfully I did that anyway but I was SO excited that I was able to figure that out.
I need him to get better - I'm really missing the man I married.
Oh shit. I took his phone and the charger home with me. I get up and frantically call the switchboard at NYU and am put through to the room where the phone rings and rings and rings. I hang up.
I go about setting up to work from home in the morning. I am uneasy and I feel like something is wrong. I call the switchboard again and ring up to the room where the nurse answers and says "Oh yes, he's been looking for you - are you planning to visit today?" I reply that I am planning to leave around noon and she says "Well he's a little agitated. I can't tell you what to do, but sooner might be better since he's in a new place."
Of course. Epic wife fail number 2. I'm on a roll.
I call Jeanie and relay the info. She and I make a plan and she picks me up at 10 instead of 12. I am trying not to panic and be crazy, but not knowing what to expect makes me a little crazy.
The drive in is pretty uneventful. Good thing - these drives turn out to be the only down time I get. Every day and I mean every day, I am thankful to God and the universe for bringing people like Jeanie and Roberta and Irene. I wouldn't have made it this far without them.
Jeanie drives us in every day. She stays with me there for 8-10 hours. She is my other set of eyes and ears. The few times she was unable to ( dear lord she HAS A FAMILY OF HER OWN!!! - what.), Roberta came in with me. It's just a blessing to not go in there by myself. I can't absorb all that gets said by the nurses, nurse practitioners, aids, doctors, surgeons, residents. It's mind blowing.
We get in there and realize that he has the most exquisite view of the East River EVER. Right next to the 34th street helipad.
He is so happy I am there. He can't remember my name. But he knows I am his wife. It's a little unsettling in the beginning as he continues to call me by his sister's name. He can't remember certain words. The remote for example. That was now referred to as his "tag". It started to become a kind of code that needed breaking. Not being really good at that sort of thing, I was guessing at most of it.
The one smart thing I did, however, was respond to being called by his sister's name with "She's not here now honey. Do you want me to call her?". He would look at me and insist and I would continue to respond the same way. It didn't take long for him to recall my name. I would ask him regularly. "Whats my name?" and he would start to answer with his sister's and then stop, think and say mine.
I was panicked that this was cancer related. I was assured that indeed this was electrolyte related. As the balance improved over time, so did the recall and the memory.
This unit was fantastic. Four beds. 1 nurse at all times. The cream of the crop. They were like stepford nurses with personalities. He was never late on meds. Ever. I didn't have to start asking 45 minutes ahead to get them in him. I didn't have to constantly chase someone down due to an occluded IV line. My job was to sit there and be the reassuring presence and for Jeanie and I to speak with the powers that be.
That day I left him with his phone and a charger so he could call as he didn't have a phone in that room. A nice flat panel TV to use his "tag" with - but no phone. The menu every day was amazing - you could order everything on it - and they would bring it. If it wasn't on there - you could write it in and they would do their best. Food wasn't bad either - for a hospital.
His room mates were in interesting and eclectic group. We had the woman across from us, Clarissa, who would whine in a feeble voice, "Ow you're hurting me" every time they administered a specific IV drug. The Orthodox elderly gentleman next to us would do battle with the nurses over whether the day was Thursday or Shabbos. And if it was Shabbos - our nurse needed to go home and cook for her husband. As a matter of fact - he wanted a male nurse because women belonged in the home. That went on for days.
That first night as we were getting ready to leave, John yells at me that he needed the tag on the wall to be where it was yesterday.
It's 10PM. Tag is remote. I got that part.
Remote on the wall? to be where it was yesterday? Two problems.
1, There's no remote on the wall or anything that could be construed as a remote and 2. we weren't here yesterday.
Completely at a loss, I maneuver his bed to a more comfortable position and eventually he calms down and goes to sleep.
We leave and were about half way home when it hit me....
The tag on the wall are the bed controls on the inner "wall" of the bed panel.
He wanted the bed set to a level that he had been at earlier in the day.
Thankfully I did that anyway but I was SO excited that I was able to figure that out.
I need him to get better - I'm really missing the man I married.
Sunday, May 11, 2014
Chapter 11: Opening day at the ER
We arrive amidst the rain drops at the entrance to the ER at the NYU medical center. John is at the phase of low electrolytes where he can only follow on task at a time and doesn't adhere to commands or suggestions. He tries to head for the entrance that the ambulance crews use and three guards and myself are trying to route him to the front door.
Here's where that palm scan thing paid off. We get into the front of the ER where there is a front desk with a palm scanner. I give our name, she asks him to please put his hand on the scanner, she looks at her screen, hands me a security badge and says "Triage, is right through those doors, Mr & Mrs Cartcath. Can you walk or would you prefer a wheel chair?"
I don't know about John but I'm exhausted. I'll take the chair. Oh and our name is Cartwright, not CartCath, The first of many butcherings to come.
We get into the triage room, where they do the usual, B/P, temp, 20 questions. The questions are things like this:
1. What is your name (John Carwright)
2. Who is this? ( usually points at me) (My Wife)
3. What is today? (Tuesday)
4. what is the date? ( April 22-23)
5. What is the year? 2014
6. Do you know where you are? Hospital
7. Do you know why you are here? Cancer
And more along that vein.
He's still alert enough to answer the questions, but he's starting to get a little frustrated. They move us to a cubicle in the nicest, cleanest, most high tech ER I've even been in. We get in there and I ask for a chair which takes them awhile to find. Once they get us in and comfortable, the first of a long, seemingly endless, line of doctors and nurses come sweeping in,
We are there about 45 minutes and I'm exhausted and its getting hard to remember what each doctor is saying, so I ask to bring Jeanie in, who is sitting patiently, adhering to the 1 person rule, in the waiting room. The hours are climbing by. He gets more blood drawn, a Sodium IV hung, A Foley Catheter put in to monitor output, A CT Scan, Xrays, you name it. With each test, brings a new doc and the endless list of questions ( see above).
"Did you know he had a broken arm?"
"Why yes, we did, in fact we told you that."
"OK well I'm the resident Orthopedist and I just wanted you to be aware that it broke at the site of one of his lesions".
"I was told at South Ocean the Lesion was on the elbow"
"No. The Bone scan ordered by the original oncologist showed the lesion in the upper arm where the fracture is"
Every day, in every way, I am thankful we fired that guy. I am so angry I can barely work out what the doc is saying.
" We aren't planning to put a cast on it at this point. The Setting will happen more naturally because the break is so high, if we let gravity do it's job here. We are going to sling it as needed but only as needed. Take it off when you are sitting up. At some point, we may do surgery to put a pin or rod in to stabilize the bone but that's not our immediate worry."
Well that doesn't sound horrific.
They take him away for yet another test. Jeanie and I finally notice the TV in the cubicle. Its on Fox News.
OH BOY. I"m just grateful John was not in the right place mentally to notice. I immediately ask a nurse aid to please change that. In fact I said, "If you want him to get well, that channel will need to be changed."
Jeanie is laughing. The Aide is laughing and we set about to find the remote. Jeanie wins the hunt and puts on ...
The Yankee game? That's as bad as Fox News for him. We both laugh and as he's being rolled back in she quickly changes it to a recap of the Mets game
It's well after 11 at this point. None of us has eaten. He finally gets some morphine and wants to sleep. I ask the nurse where the light switch for the overhead light is. She doesn't know as it's her first day.
And everyone Else's. This is a BRAND NEW ER.
That explains the fine, shiny patina of "new" that is everywhere. Then I recall why. Super storm Sandy had knocked this ER out of commission. Today was it's first day in operation. Not the Official ground breaking, ribbon cutting day, that's two days from now. But today is it's first day in operation.
We go through a nice smooth orderly shift change. In my whole life and the myriad of hospitals I've been to with parents, siblings etc, I've never been in a hospital where the shift change was not only smooth, but virtually unnoticeable except for the introduction of the new nurse. Our new nurse is perky. A little too perky for midnight, if you ask me.
Another interesting protocol that I like, is that the ER .nurse, takes the patient all the way to their room, once admitted, and does the transition and outtake with the floor /room nurse. So Jeanie and I hightail it behind Nurse Perky up to the 17th floor in a patient elevator that has an operator in it. I haven't seen one of those since.... wait- I've NEVER seen one of those.
We wait outside the room while they transfer him to the new bed and get him weighed with a scale that looked like something you'd hang a whale on while cooking over the fire. At the very least a torture device, The thing was practically medieval.
It looks a lot more tame in the picture. But if you imagine the bed piece is removed and the clamps are intertwined.... this thing is freaky. We watch it roll by us on the way in, then on the way out. I could only surmise from the lack of screaming that it is a fairly benign process.
We are allowed in to see John, and the very first thing we do is get him set up with his remote for the TV. Once he's settled, I kiss him goodbye and Jeanie and I hit the road. It's 4AM. We have a long drive ahead of us.
Here's where that palm scan thing paid off. We get into the front of the ER where there is a front desk with a palm scanner. I give our name, she asks him to please put his hand on the scanner, she looks at her screen, hands me a security badge and says "Triage, is right through those doors, Mr & Mrs Cartcath. Can you walk or would you prefer a wheel chair?"
I don't know about John but I'm exhausted. I'll take the chair. Oh and our name is Cartwright, not CartCath, The first of many butcherings to come.
We get into the triage room, where they do the usual, B/P, temp, 20 questions. The questions are things like this:
1. What is your name (John Carwright)
2. Who is this? ( usually points at me) (My Wife)
3. What is today? (Tuesday)
4. what is the date? ( April 22-23)
5. What is the year? 2014
6. Do you know where you are? Hospital
7. Do you know why you are here? Cancer
And more along that vein.
He's still alert enough to answer the questions, but he's starting to get a little frustrated. They move us to a cubicle in the nicest, cleanest, most high tech ER I've even been in. We get in there and I ask for a chair which takes them awhile to find. Once they get us in and comfortable, the first of a long, seemingly endless, line of doctors and nurses come sweeping in,
We are there about 45 minutes and I'm exhausted and its getting hard to remember what each doctor is saying, so I ask to bring Jeanie in, who is sitting patiently, adhering to the 1 person rule, in the waiting room. The hours are climbing by. He gets more blood drawn, a Sodium IV hung, A Foley Catheter put in to monitor output, A CT Scan, Xrays, you name it. With each test, brings a new doc and the endless list of questions ( see above).
"Did you know he had a broken arm?"
"Why yes, we did, in fact we told you that."
"OK well I'm the resident Orthopedist and I just wanted you to be aware that it broke at the site of one of his lesions".
"I was told at South Ocean the Lesion was on the elbow"
"No. The Bone scan ordered by the original oncologist showed the lesion in the upper arm where the fracture is"
Every day, in every way, I am thankful we fired that guy. I am so angry I can barely work out what the doc is saying.
" We aren't planning to put a cast on it at this point. The Setting will happen more naturally because the break is so high, if we let gravity do it's job here. We are going to sling it as needed but only as needed. Take it off when you are sitting up. At some point, we may do surgery to put a pin or rod in to stabilize the bone but that's not our immediate worry."
Well that doesn't sound horrific.
They take him away for yet another test. Jeanie and I finally notice the TV in the cubicle. Its on Fox News.
OH BOY. I"m just grateful John was not in the right place mentally to notice. I immediately ask a nurse aid to please change that. In fact I said, "If you want him to get well, that channel will need to be changed."
Jeanie is laughing. The Aide is laughing and we set about to find the remote. Jeanie wins the hunt and puts on ...
The Yankee game? That's as bad as Fox News for him. We both laugh and as he's being rolled back in she quickly changes it to a recap of the Mets game
It's well after 11 at this point. None of us has eaten. He finally gets some morphine and wants to sleep. I ask the nurse where the light switch for the overhead light is. She doesn't know as it's her first day.
And everyone Else's. This is a BRAND NEW ER.
That explains the fine, shiny patina of "new" that is everywhere. Then I recall why. Super storm Sandy had knocked this ER out of commission. Today was it's first day in operation. Not the Official ground breaking, ribbon cutting day, that's two days from now. But today is it's first day in operation.
We go through a nice smooth orderly shift change. In my whole life and the myriad of hospitals I've been to with parents, siblings etc, I've never been in a hospital where the shift change was not only smooth, but virtually unnoticeable except for the introduction of the new nurse. Our new nurse is perky. A little too perky for midnight, if you ask me.
Another interesting protocol that I like, is that the ER .nurse, takes the patient all the way to their room, once admitted, and does the transition and outtake with the floor /room nurse. So Jeanie and I hightail it behind Nurse Perky up to the 17th floor in a patient elevator that has an operator in it. I haven't seen one of those since.... wait- I've NEVER seen one of those.
We wait outside the room while they transfer him to the new bed and get him weighed with a scale that looked like something you'd hang a whale on while cooking over the fire. At the very least a torture device, The thing was practically medieval.
It looks a lot more tame in the picture. But if you imagine the bed piece is removed and the clamps are intertwined.... this thing is freaky. We watch it roll by us on the way in, then on the way out. I could only surmise from the lack of screaming that it is a fairly benign process.
We are allowed in to see John, and the very first thing we do is get him set up with his remote for the TV. Once he's settled, I kiss him goodbye and Jeanie and I hit the road. It's 4AM. We have a long drive ahead of us.
Saturday, May 10, 2014
Chapter 10: Oncologist Number 2 - the elephant in the room
Jeanie and I load John in the Van for a trip into NYC. We are headed for the famed Cancer Center of NY. We have an appointment with one of the top oncologists in the city. He was recommended to us by a close friend who paved the way. When I called to make the appointment, his administrative assistant said,
"Oh!!! We've been waiting for your call!"
You can't imagine how refreshing that was. She was lovely. She took all of our information and called me back an hour later with an appointment time.
The ride was uneventful. Thank goodness. We arrive at the center, where Jeanie drops us off, heads over to park the car, and we go in.
This place is like a palace. We are ushered into a center where they handle the intake and new patient registration. I'm very impressed. We finished the entire intake and paperwork, when she asks us if we want to register for palm scan. holy crap! This is very high tech.
In a nutshell, it's exactly what it sounds like. you put your right hand on the scanner in any one of the Affiliated centers or hospitals and ALL of your patient records show up on the screen. It's so cool. And I know this because we got to test drive that puppy. But more on that later.
We are directed to the 8th floor. We get on the elevator and it has a seat! John likes that. Upon reaching the 8th floor, we enter a gorgeous waiting room. I go up to the desk to collect the secondary registration forms. They hand me all the forms, pens and requisite clipboard. They they advise me that they have coffee, tea, hot cocoa, sodas, juice, saltines, graham crackers, a computer terminal and free WiFi.
This is better than being home.
We sit down and I fill out the paperwork. I hand it in and we are waiting for what feels like hours. Oh wait - it is hours.
It's nearly 430 when they call us in and we are taken to an exam room where a lovely nurse practitioner takes Blood pressure and temperature. She reviews the intake forms and asks for additional information.
She leaves and tells us that the good doctor should be joining us shortly.
The door opens and a very tall man comes in - average build. He introduces himself as Abe. He talks to John, asking lots of questions. He examines the arm by feel through John's clothing. Nothing grabs him of interest but he will cover that with us later. He talks to us specifically and tells the Pain Management Specialist will be joining us. I look at Jeanie and realize, this is a class operation here. They have specialists for everything even within the practice.
Dr. Mahr joins us and asks some of the same questions, but finally lifts the sleeve on John's shirt and I almost pass out. The bruise goes from his shoulder to his elbow! This was not there this morning! I put him in the shower myself!!!! I'm sick at this point. Dr Mahr calls downstairs and send us immediately to xray.
We go down to the first floor to get xrayed. Once there, John gets called in immediately. While we are waiting, the nurse practitioner comes in from upstairs and tells us we need to go to the lobby to have blood drawn while we are there.
John comes out, and we head down to the lobby to phlebotomy. She takes us right away again and John grades her on her performance. That's what happens when you are married to a phlebotomist! After that we head upstairs to Dr Chou Chou's office.
We are ushered into Dr Chou Chou's office where we are surrounded by elephants. Big ones, small ones of every medium. It's an odd thing to collect. But here we are and there's not one elephant in the room, but hundreds.
He turns his monitor to face us and say "You have a broken arm. In fact, the orthopedist that I sent this to, said well, it's a little fracture. a LITTLE Fracture asshole"
We all giggle a little at that one. I immediately feel like a heel for letting him ride out a broken bone like that.
Then he tells us that John has a mass in his lung that is Squamous Cell Carcinoma. It's advanced but he can't stage it without a PET Scan. In addition he has lesions on his bones which caused the rib fracture a few weeks back and the arm fracture that we are currently dealing with. Most likely the treatment will be chemotherapy.
He has no way without some advanced testing to determine if its metastatic from the original 2008 cancer or if it's new.
Some things need to change and new tests need to be ordered. There are going to be CT scans, Maybe an MRI to start. But the biggest issue he has is the platelets are dangerously low based on the blood test taken the day before John was discharged from South Ocean. His Sodium was low too.
This sinks in and my head implodes.
Inside I am screaming.
THEY LET HIM GO HOME WITH LOW PLATELETS AND LOW SODIUM
We came in there to start with for electrolyte imbalance!!!! How do you discharge someone you KNOW has these issues???
The doctor and his team think that there is a possibility that the platelet situation is a result of the floor protocol at South ocean to put all patients on heparin.
The Platelets are 48000. Normal is 51000 and up - his are usually up around 100000.
I am floored but Dr Mahr moves us to the next phase which is pain management. She told us to throw away the percocet. Happily, I think to myself. She provides us a script for a pain patch and Hydromorphone for breakthrough pain. Then we get a script for a prescription strength laxative and a stool softener. A sling for his arm.
They send us home and we are to make a call for a followup appointment in 3 days.
Jeanie gets the car and we strap ourselves in for rush hour traffic. We just make it out of the midtown tunnel, when I notice that my cell phone is ringing and it's Dr Chou Chou.
"Where are you right now?" she asks
"We just exited the mid town tunnel, why? Did we forget something?" I ask
" Please turn around and come back to the emergency room at the NYU Medical Center" She says, "His sodium is dangerously low"
"um - OK. " I stammer " What's the address?" I manage to get out.
She provides me the address and we hang up.
I tell Jeanie what's going on and then I turn around to explain it to John. Who isn't getting it. He's not comprehending what I'm saying. Ah. Yes. I've seen this before. I know what this is. The fear skitters through my stomach. I tell Jeanie to hit it, we've got to move. Time is of the essence.
"Oh!!! We've been waiting for your call!"
You can't imagine how refreshing that was. She was lovely. She took all of our information and called me back an hour later with an appointment time.
The ride was uneventful. Thank goodness. We arrive at the center, where Jeanie drops us off, heads over to park the car, and we go in.
This place is like a palace. We are ushered into a center where they handle the intake and new patient registration. I'm very impressed. We finished the entire intake and paperwork, when she asks us if we want to register for palm scan. holy crap! This is very high tech.
In a nutshell, it's exactly what it sounds like. you put your right hand on the scanner in any one of the Affiliated centers or hospitals and ALL of your patient records show up on the screen. It's so cool. And I know this because we got to test drive that puppy. But more on that later.
We are directed to the 8th floor. We get on the elevator and it has a seat! John likes that. Upon reaching the 8th floor, we enter a gorgeous waiting room. I go up to the desk to collect the secondary registration forms. They hand me all the forms, pens and requisite clipboard. They they advise me that they have coffee, tea, hot cocoa, sodas, juice, saltines, graham crackers, a computer terminal and free WiFi.
This is better than being home.
We sit down and I fill out the paperwork. I hand it in and we are waiting for what feels like hours. Oh wait - it is hours.
It's nearly 430 when they call us in and we are taken to an exam room where a lovely nurse practitioner takes Blood pressure and temperature. She reviews the intake forms and asks for additional information.
She leaves and tells us that the good doctor should be joining us shortly.
The door opens and a very tall man comes in - average build. He introduces himself as Abe. He talks to John, asking lots of questions. He examines the arm by feel through John's clothing. Nothing grabs him of interest but he will cover that with us later. He talks to us specifically and tells the Pain Management Specialist will be joining us. I look at Jeanie and realize, this is a class operation here. They have specialists for everything even within the practice.
Dr. Mahr joins us and asks some of the same questions, but finally lifts the sleeve on John's shirt and I almost pass out. The bruise goes from his shoulder to his elbow! This was not there this morning! I put him in the shower myself!!!! I'm sick at this point. Dr Mahr calls downstairs and send us immediately to xray.
We go down to the first floor to get xrayed. Once there, John gets called in immediately. While we are waiting, the nurse practitioner comes in from upstairs and tells us we need to go to the lobby to have blood drawn while we are there.
John comes out, and we head down to the lobby to phlebotomy. She takes us right away again and John grades her on her performance. That's what happens when you are married to a phlebotomist! After that we head upstairs to Dr Chou Chou's office.
We are ushered into Dr Chou Chou's office where we are surrounded by elephants. Big ones, small ones of every medium. It's an odd thing to collect. But here we are and there's not one elephant in the room, but hundreds.
He turns his monitor to face us and say "You have a broken arm. In fact, the orthopedist that I sent this to, said well, it's a little fracture. a LITTLE Fracture asshole"
We all giggle a little at that one. I immediately feel like a heel for letting him ride out a broken bone like that.
Then he tells us that John has a mass in his lung that is Squamous Cell Carcinoma. It's advanced but he can't stage it without a PET Scan. In addition he has lesions on his bones which caused the rib fracture a few weeks back and the arm fracture that we are currently dealing with. Most likely the treatment will be chemotherapy.
He has no way without some advanced testing to determine if its metastatic from the original 2008 cancer or if it's new.
Some things need to change and new tests need to be ordered. There are going to be CT scans, Maybe an MRI to start. But the biggest issue he has is the platelets are dangerously low based on the blood test taken the day before John was discharged from South Ocean. His Sodium was low too.
This sinks in and my head implodes.
Inside I am screaming.
THEY LET HIM GO HOME WITH LOW PLATELETS AND LOW SODIUM
We came in there to start with for electrolyte imbalance!!!! How do you discharge someone you KNOW has these issues???
The doctor and his team think that there is a possibility that the platelet situation is a result of the floor protocol at South ocean to put all patients on heparin.
The Platelets are 48000. Normal is 51000 and up - his are usually up around 100000.
I am floored but Dr Mahr moves us to the next phase which is pain management. She told us to throw away the percocet. Happily, I think to myself. She provides us a script for a pain patch and Hydromorphone for breakthrough pain. Then we get a script for a prescription strength laxative and a stool softener. A sling for his arm.
They send us home and we are to make a call for a followup appointment in 3 days.
Jeanie gets the car and we strap ourselves in for rush hour traffic. We just make it out of the midtown tunnel, when I notice that my cell phone is ringing and it's Dr Chou Chou.
"Where are you right now?" she asks
"We just exited the mid town tunnel, why? Did we forget something?" I ask
" Please turn around and come back to the emergency room at the NYU Medical Center" She says, "His sodium is dangerously low"
"um - OK. " I stammer " What's the address?" I manage to get out.
She provides me the address and we hang up.
I tell Jeanie what's going on and then I turn around to explain it to John. Who isn't getting it. He's not comprehending what I'm saying. Ah. Yes. I've seen this before. I know what this is. The fear skitters through my stomach. I tell Jeanie to hit it, we've got to move. Time is of the essence.
Friday, May 9, 2014
Chapter 9: Honorable Discharge
Dr Feldner said John can go home.
Home. It's all he wants. It's all I want. He cannot get well in this environment.
The plan is I will work from home in the morning, then I will pick up his scripts on my way to the hospital to get him.
The call comes in saying the scripts are ready and while I am confirming, my phone beeps with another incoming call from John in hysterics. He needs to leave immediately.
I hurry to Dr. Feldner then head over to South Ocean. I walk into mayhem.
John is dressed and sitting in the chair - bleeding. Lauren, the Nursing floor manager, is apologizing six ways to Sunday and I'm frantically packing because John is screaming like a maniac. I have to get him out of here quickly.
On the way out, wheeling the wheelchair down the hall. the nurses are administering his meds as we are leaving the hospital. I never stopped to check what they were giving him. Later I will kick myself for that.
I take all the discharge paperwork and John into the house. I make him comfortable then I contact Ron, our friend to come drop off the scripts for me. I can't leave him alone. He's not right. Something is still not really right.
It's a Friday. I am sleeping in three hour shifts because I have to administer percocet. to John to combat the Leg pain he is still suffering from.
Saturday dawns and I wake up with phenomenal swelling in my entire face. I call a favor in and have Jeanie pick up the antibiotic at Wall-Verde for me. I proceed to sleep for the next two days waking only to feed John food and meds.
It's 10PM on Sunday. I'm finally feeling better, John is on the mend when he yells from the living room,
"Honey, something weird happened to my arm."
His arm? that's new.
"What happened?" I ask as I walk down the hall.
"I don't know but it doesn't feel right and it really hurts. Take me to the hospital". He says
Oh no. we aren't going anywhere NEAR that place.
" Where does it hurt, honey?" I ask
"I don't know, everywhere". he says.
"I'm going to need a little bit more than that, honey" I say
" Don't know - above the elbow. the elbow. near the elbow"
I think back to the results of the bone scan and Dr. Chobani mentioned a cancer lesion on his elbow. So I call Dr. Feldman and when he calls back, I tell him what happened.
Feldman said it was most like the lesion causing unnatural friction which will cause pain. I can double up the pain meds.
So I tell John and decide to ice the area in the event of inflammation or swelling.
The next two days icing and medicating and all I can think of is Tuesday cannot come FAST enough. Something has to give. He can't live like this. it's not fair.
Neither can I.
I want my husband back. Badly. This is not working. This new doctor needs to be as good as all the reviews say he is. I feel like we are hamsters on wheel.
Stop the wheel. We both want to get off.
Dr. ChouChou you need to help us.
Tuesday - you need to come sooner.
Home. It's all he wants. It's all I want. He cannot get well in this environment.
The plan is I will work from home in the morning, then I will pick up his scripts on my way to the hospital to get him.
The call comes in saying the scripts are ready and while I am confirming, my phone beeps with another incoming call from John in hysterics. He needs to leave immediately.
I hurry to Dr. Feldner then head over to South Ocean. I walk into mayhem.
John is dressed and sitting in the chair - bleeding. Lauren, the Nursing floor manager, is apologizing six ways to Sunday and I'm frantically packing because John is screaming like a maniac. I have to get him out of here quickly.
On the way out, wheeling the wheelchair down the hall. the nurses are administering his meds as we are leaving the hospital. I never stopped to check what they were giving him. Later I will kick myself for that.
I take all the discharge paperwork and John into the house. I make him comfortable then I contact Ron, our friend to come drop off the scripts for me. I can't leave him alone. He's not right. Something is still not really right.
It's a Friday. I am sleeping in three hour shifts because I have to administer percocet. to John to combat the Leg pain he is still suffering from.
Saturday dawns and I wake up with phenomenal swelling in my entire face. I call a favor in and have Jeanie pick up the antibiotic at Wall-Verde for me. I proceed to sleep for the next two days waking only to feed John food and meds.
It's 10PM on Sunday. I'm finally feeling better, John is on the mend when he yells from the living room,
"Honey, something weird happened to my arm."
His arm? that's new.
"What happened?" I ask as I walk down the hall.
"I don't know but it doesn't feel right and it really hurts. Take me to the hospital". He says
Oh no. we aren't going anywhere NEAR that place.
" Where does it hurt, honey?" I ask
"I don't know, everywhere". he says.
"I'm going to need a little bit more than that, honey" I say
" Don't know - above the elbow. the elbow. near the elbow"
I think back to the results of the bone scan and Dr. Chobani mentioned a cancer lesion on his elbow. So I call Dr. Feldman and when he calls back, I tell him what happened.
Feldman said it was most like the lesion causing unnatural friction which will cause pain. I can double up the pain meds.
So I tell John and decide to ice the area in the event of inflammation or swelling.
The next two days icing and medicating and all I can think of is Tuesday cannot come FAST enough. Something has to give. He can't live like this. it's not fair.
Neither can I.
I want my husband back. Badly. This is not working. This new doctor needs to be as good as all the reviews say he is. I feel like we are hamsters on wheel.
Stop the wheel. We both want to get off.
Dr. ChouChou you need to help us.
Tuesday - you need to come sooner.
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