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.
Wednesday, May 21, 2014
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.
Thursday, May 8, 2014
Chapter 8: Doesn't Follow instructions
Appearances are, indeed, sometimes deceptive.
It's a fairly quiet day. We are awaiting the coordination of the "brain scan" with anesthesia when it occurs to me that Dr. Chobani may come back with test results from the biopsy. The last thing we need is to have those provided to John without support. I decided to make a call to his office and leave a message there as well as on his cell phone. I requested that no information on his condition be provided to him without me or one of our team present.
Seems simple enough. While I was leaving those messages, Irene, a valuable member of our team and a professional patient advocate, texts me to let me know that she is en route to John for a visit and to make sure that his care is wat it's most optimal.
Not an hour later, i get frantic messages on my office phone and alternating with my cell from John. Then we added Dr. Chobani to the mix and then Irene.
John is so hysterical that I can't understand a word he's saying. I take the call into my bosses office and close the door. The news isn't good but I don't know how accurate it is coming from John. Not that he's omitting anything, but I made him slow down and repeat it.
Stage 4 lung cancer with treatment as palliative chemotherapy.
That can't be right.
I tell John to calm down. I hung up and called the "good" doctor back.
No, John did not hear him wrong,
I ask him why my orders where blatantly disregarded. He sidestepped the question and told me that John has requested to start the chemo right away and it's been ordered for later that day.
I ignored the fact that I had been ignored and tell the "good" doctor, thank you, but no thank you. We wil not be needing his services any further and will be seeking a second opinion. I immediately pack up and ad sprint to the hospital where Irene has been the entire time.
Thank god for her! The only reason I was told at all was because she locked him in the room and made him call me.
For the first time, I laughed outright. And was glad that I acted on the good impulse to make an appointment with one of the top ten oncologists in the city at a major cancer center. Irene was a gift from the universe that day and I was grateful to have her.
Tuesday, May 6, 2014
Chapter 7: The Godfather comes to dinner?
It's beautiful out. What a gorgeous morning. I roll over in bed to wake my sleeping husband....
shit.
He's still in the hospital. and Wait - so am I? What the hell? Oh that's right. I slept over at his request. and I'm not in a bed I'm in a chair.
Well doesn't this just suck. And the weirdest night ever. In the middle of the night the door opened, a man in a black fedora and black overcoat slithers over to the side of the bed shakes John's hand. asks if his leg is still bad, shakes my hand and leaves. it's about 3AM. It took me till I was already home to figure out that this was Dr Feldner. All the while I kept feeling like I was in that hospital scene in the Godfather.
Believe it or not, I get up, go home because I have to feed the felines. Take a shower etc. I get home and take care of these things, then I make coffee and am settling into work when I get a panicked phone call from John.
"Honey, you have to come here immediately - hurry"
You'd think by now I would know his code. But no. I drop what I'm doing, pack up and rush back over there. I fly through security without stopping, signing in and getting a badge. Why?
Because we don't need no stinkin' badges. THAT'S WHY.
Sorry - I couldn't resist. But anyway. I get to the room and he's all smiles and eating and drinking coffee. I kiss him and ask him what is wrong ?
"I missed you and wanted you here" He replied.
How sweet, how adorable - why do I have the urge to punch him?
So I set up shop and go to work. A few hours later, I get a text from Jeanie. She has planned a little dinner party. Valerie and Sean, our younger selves, are coming to visit along with Jeanie and Joe. Should be fun. But wait, there's more. Jeanie is making dinner. Not just any dinner but Beanie Weanie - John's Favorite food on the planet. We are all having Pasta and Sauce with sausage and meatballs. There's soda and good friends and good food.
While I am working and anticipating the fun for later, We get a visit from the Renal Docs AND the Dr Chobani. The Renal docs tell us his Kidneys are in perfect working order. They are the kidneys of a 20 year old. His electrolytes are all balanced but they want to keep him on the sodium drip a little bit longer.
Dr Chobani comes in and tells me he has cancer in his bones and the fractured Rib is from coughing and a lesion on them. I ask him if that is the result of the bone scan. He tells me yes and leaves. I am just wrapping my head around this when he walks back in and says
"He had a Bone Scan? When was this?"
You are !@@^!%$^@#!*& kidding me. you ordered the %^@&#%*!^@# test and you don't know that he not only had it but the results are probably on your damn desk?
I'm starting not to like him very much.
So dinner time comes and we are having an amazing time visiting and eating and drinking. Beanie Weanie is the hit we hoped it would be. But he's in a lot of pain so we cut the night short.
I wait til he has his night time percocet then head home. To our poor cats, Magoo and Baboo, who miss John terribly and look at me accusingly as if I have taken him from our home and murdered him.
I fall into a dreamless sleep. Grateful to our good friends and wildly exhausted.
Monday, May 5, 2014
Chapter 6: Confusion say....
That conversation with Janet stayed with me all night.
I was bothered by a number of things. The main thing is that it became quite clear to me that the women in John's family bonded together to move his care in a particular direction. It doesn't especially matter whether or not that direction is the right one, or even if I agree or disagree. It's that it was done without his knowledge or consent. Or mine in the event he was unable to make those decisions.
I decided to come at this from a place of healing. We all want him well and while we may squabble at how we approach it, we all want the same end result.
Just how many times do I have to repeat that to myself until I fully believe it? I mostly do... but there's a little wee piece.... it's just not sitting right.
I do my usual routine of working til 11 then packing up going to the hospital and setting my office up there. While I am mid setup - Dr. Chobani arrives. He takes this moment to tell me that he spoke to Helen, John's younger sister. I had given permission a few days ago. So I didn't find this odd. After the usual pleasantries, he said, "I've ordered a brain scan for John. His sister suggested it and I agree that he's too confused for this to be normal".
I want to slap my hand against my forehead and do a Homer Simpson "Doh".
THAT'S where the hoopla on the brain scan came from. It started with Helen, escalated to Janet and then was told to Bettina.
And was going to be subtly slipped past John and I.
All I could think of as I watched him sleep, was how infuriated he would be with the women in his family. The last time he was seriously ill, well, let's just say there's a really good reason we don't talk much about the family dynamic at that point. His brother Adam, had a debilitating neurological disease that had him at deaths door, John was his caretaker. Bettina pulled out every stop both supportive and financial to save her youngest but you don't survive this illness. So in the last third of Adam's life, Bettina was now faced with both of her sons in critical condition. Only John had the medical possibility of surviving and she opted to support the Adam.
John was put under medical coma in order to regulate his breathing and get his electrolytes back in balance as they were critically low. He was under for a total of 3 days. During that time, Bettina was his medical proxy. On paper I had little say in anything. However, She let me do the heavy lifting though because I was there day to day and she was busy with Adan. Until she WANTED to be involved. Upon coming out of the coma, the side effects include confusion and severe debilitating depression. She used the depression against him and he spent more time in the hospital then was necessary.
Because this all happened on their watch last time, I knew he would lose his mind. Nevertheless, I tell him the entire truth and he attempts to have the MRI aka the "brain scan". It's a closed MRI and he just couldn't handle the enclosed space. Helen sent him a text when it failed that said "Buck up and just do it! What's the big deal you just have to lie there". He almost threw the phone across the room.
The MRI techs all said that we could do this test with anesthesia. I said that's perfect. John agreed that the only way he would get in that tube is under heavy sedation.
End of story, right?
Not even close. Not even close.
I was bothered by a number of things. The main thing is that it became quite clear to me that the women in John's family bonded together to move his care in a particular direction. It doesn't especially matter whether or not that direction is the right one, or even if I agree or disagree. It's that it was done without his knowledge or consent. Or mine in the event he was unable to make those decisions.
I decided to come at this from a place of healing. We all want him well and while we may squabble at how we approach it, we all want the same end result.
Just how many times do I have to repeat that to myself until I fully believe it? I mostly do... but there's a little wee piece.... it's just not sitting right.
I do my usual routine of working til 11 then packing up going to the hospital and setting my office up there. While I am mid setup - Dr. Chobani arrives. He takes this moment to tell me that he spoke to Helen, John's younger sister. I had given permission a few days ago. So I didn't find this odd. After the usual pleasantries, he said, "I've ordered a brain scan for John. His sister suggested it and I agree that he's too confused for this to be normal".
I want to slap my hand against my forehead and do a Homer Simpson "Doh".
THAT'S where the hoopla on the brain scan came from. It started with Helen, escalated to Janet and then was told to Bettina.
And was going to be subtly slipped past John and I.
All I could think of as I watched him sleep, was how infuriated he would be with the women in his family. The last time he was seriously ill, well, let's just say there's a really good reason we don't talk much about the family dynamic at that point. His brother Adam, had a debilitating neurological disease that had him at deaths door, John was his caretaker. Bettina pulled out every stop both supportive and financial to save her youngest but you don't survive this illness. So in the last third of Adam's life, Bettina was now faced with both of her sons in critical condition. Only John had the medical possibility of surviving and she opted to support the Adam.
John was put under medical coma in order to regulate his breathing and get his electrolytes back in balance as they were critically low. He was under for a total of 3 days. During that time, Bettina was his medical proxy. On paper I had little say in anything. However, She let me do the heavy lifting though because I was there day to day and she was busy with Adan. Until she WANTED to be involved. Upon coming out of the coma, the side effects include confusion and severe debilitating depression. She used the depression against him and he spent more time in the hospital then was necessary.
Because this all happened on their watch last time, I knew he would lose his mind. Nevertheless, I tell him the entire truth and he attempts to have the MRI aka the "brain scan". It's a closed MRI and he just couldn't handle the enclosed space. Helen sent him a text when it failed that said "Buck up and just do it! What's the big deal you just have to lie there". He almost threw the phone across the room.
The MRI techs all said that we could do this test with anesthesia. I said that's perfect. John agreed that the only way he would get in that tube is under heavy sedation.
End of story, right?
Not even close. Not even close.
Sunday, May 4, 2014
Chapter 5: The Eye of the Needle
John may well be the bravest man I know.
Today we are having the needle biopsy only they are going to render him semi conscious with an anesthesiologist on hand to assist.
He's still on an IV of Saline. But he's far more like himself. At one point,. he woke up, looked at Jeanie and I and said "Ladies - pull up your chairs for some conversation. I want to know the latest things happening at church. "
You could have knocked us both off our seats. So we did as he asked. It was a fun conversation. Lots of interaction.
Then they came for the biopsy. His anxiety level is high but he is going to be the tough guy and muscle through it.
I go downstairs with him, holding his hand. We get down there and again the docs all introduce themselves around and explain exactly how the procedure will go. Same as before only they are going to put him in a "twilight sleep". Doesn't seem restful to me but OK.
I go into the family waiting room.
Fifteen minutes later they come out and a completely DIFFERENT Doctor takes his bed, him and me and a nurse to the recovery room. The whole trip she's commenting that his B/P is very high.
"Wouldn't yours be, if you had a needle the size of Wyoming being stuck into your lung?" I responded
Not quite getting my humor or sarcasm, she responded, "It's too high for that even".
Ugh. I hate people who don't get it and don't want to.
I go into the family waiting area again. I am told it should be 30-45 minutes before he will be ready to go to his room.
40 minutes later, Roberta texts me to say that John needs his glasses.
Wait. What?
I can't help but think she managed to weasel her way into the recovery room. So I text her back, asking her where she is..
"I'm in the room with him. He's panicked because you aren't here and he needs his glasses", she wrote.
How IN HELL did they wheel him past me? Why did NO ONE come get me? What kind of third world country am I in? They just take him away and don't notify me as they told me they would?
I march out of the waiting room. I have no idea where in the hospital I am. I don't even know what floor I am on. I see someone in the hallway and demand to know where I am and how I get back to the F Elevators or what I am now referring to as the F'n elevators. The poor chap I stopped is probably still looking for the missing body parts. I cursed and ranted all the way to his room.
I stop as soon as I see John's face. He is in some serious pain. Shit. What the hell did they do? I know they said they got a good sample and he did well, but he looks miserable.
I wait til he's asleep and then I slip out. On my way home, I speak to Janet. She asks me when he's having a "brain scan".
DING.
I had this same conversation with Bettina that very morning.
"brain scan".
Why would we be needing a brain scan? And why are both women asking for it? and with the same verbiage? I am suspicious. I am connecting dots no one wanted connected.
I listen carefully as she attempts to convey and convince me that he should have one. I am not against an MRI ("brain scan") but I'm not rushing him into a test the doctor has not yet ordered however I agree to have the conversation with the doctor the next day.
Today we are having the needle biopsy only they are going to render him semi conscious with an anesthesiologist on hand to assist.
He's still on an IV of Saline. But he's far more like himself. At one point,. he woke up, looked at Jeanie and I and said "Ladies - pull up your chairs for some conversation. I want to know the latest things happening at church. "
You could have knocked us both off our seats. So we did as he asked. It was a fun conversation. Lots of interaction.
Then they came for the biopsy. His anxiety level is high but he is going to be the tough guy and muscle through it.
I go downstairs with him, holding his hand. We get down there and again the docs all introduce themselves around and explain exactly how the procedure will go. Same as before only they are going to put him in a "twilight sleep". Doesn't seem restful to me but OK.
I go into the family waiting room.
Fifteen minutes later they come out and a completely DIFFERENT Doctor takes his bed, him and me and a nurse to the recovery room. The whole trip she's commenting that his B/P is very high.
"Wouldn't yours be, if you had a needle the size of Wyoming being stuck into your lung?" I responded
Not quite getting my humor or sarcasm, she responded, "It's too high for that even".
Ugh. I hate people who don't get it and don't want to.
I go into the family waiting area again. I am told it should be 30-45 minutes before he will be ready to go to his room.
40 minutes later, Roberta texts me to say that John needs his glasses.
Wait. What?
I can't help but think she managed to weasel her way into the recovery room. So I text her back, asking her where she is..
"I'm in the room with him. He's panicked because you aren't here and he needs his glasses", she wrote.
How IN HELL did they wheel him past me? Why did NO ONE come get me? What kind of third world country am I in? They just take him away and don't notify me as they told me they would?
I march out of the waiting room. I have no idea where in the hospital I am. I don't even know what floor I am on. I see someone in the hallway and demand to know where I am and how I get back to the F Elevators or what I am now referring to as the F'n elevators. The poor chap I stopped is probably still looking for the missing body parts. I cursed and ranted all the way to his room.
I stop as soon as I see John's face. He is in some serious pain. Shit. What the hell did they do? I know they said they got a good sample and he did well, but he looks miserable.
I wait til he's asleep and then I slip out. On my way home, I speak to Janet. She asks me when he's having a "brain scan".
DING.
I had this same conversation with Bettina that very morning.
"brain scan".
Why would we be needing a brain scan? And why are both women asking for it? and with the same verbiage? I am suspicious. I am connecting dots no one wanted connected.
I listen carefully as she attempts to convey and convince me that he should have one. I am not against an MRI ("brain scan") but I'm not rushing him into a test the doctor has not yet ordered however I agree to have the conversation with the doctor the next day.
Chapter 4: Seeing Spots
The next morning, I get up and try to get some work done in the morning. Somewhere around 11, I get the idea in my head that he's panicking without me. Where do I get these ideas? Oh I don't know.... I guess the call in mass hysteria from him, but I'm just spit balling....
So I head up there with Jeanie. We get to the room and he hands me a pamphlet from visiting nurses who tell him he will need this when he is released.
OK.
Confused.
What the HELL?
So I calmly sit down and ask him what they said. He couldn't tell me much more than that. So I called the Dr. T. She was doing rounds in another hospital so her boss Dr Chabonne called me to say that he is sending a "lung guy" to look at the lung. There's cancer there and he has pneumonia.
I stare at the phone. As if it might bite me.
Cancer. In the lung?
PNEUMONIA?
How were these things missed?
Janet, his sister comes by with his parents, Bettina and Josef. We are there about 10 minutes just catching up on the niceties and small talk when the "Lung Guy" with a long Italian name materializes and whisks Bettina,. Jeanie, Janet and I down the hall for a slide show of his right lung.
Siskell and Ebert would have declined review of this show, that I can guarantee.
We all walked down the hall, Janet gripping my hand tightly - thank god - I thought I was going to pass out.
Upon arriving at a computer terminal at the nurses station, the "lung guy" proceeds to bring up the CAT Scans. A clearly defined mass in the bottom lobe of the right lung. Some spots in addition but this mass is the big concern.
We all traipse back to the room where the "lung guy" says we will most likely do a needle biopsy to see what we are dealing with. Evidently this is done, "awake" and face down on a table while they insert novacaine through a needle into the lung as well as a local anesthetic in the back. Once numbed up well, they insert a HUGE needle through the back into the lung.
Charming.
This is scheduled for the next day.
He can't wait.....
The next morning I get there and good thing because within minutes, he was taken to get an ultrasound on his kidneys. Poor guy was in misery on the stretcher and then we had to wait for half an hour. Once we were in it was fast. He has the kidneys of an 18 year old, we are told.
We get back upstairs to be told we are now moving to the oncology floor. Private room for now. A friend of John's, Bob, has come to visit and helps me pack the room up so we can move quickly.
I should have known better - hurry up and wait!!!!
45 minutes later we are on our way. Once we get to the new room and they get him settled, they call for the biopsy. Can't the poor bastard get any rest?
We go downstairs, We meet the surgeon and he gets wheeled inside. Four minutes later, docs come out and nurse says to me we are going to have reschedule this with Anesthesia. I said OK and John tells me it's because lying on his stomach makes the pain in his leg roughly about a 12 on a scaled of 0-10.
Pay attention to that. It's going to be on the quiz later.
So I head up there with Jeanie. We get to the room and he hands me a pamphlet from visiting nurses who tell him he will need this when he is released.
OK.
Confused.
What the HELL?
So I calmly sit down and ask him what they said. He couldn't tell me much more than that. So I called the Dr. T. She was doing rounds in another hospital so her boss Dr Chabonne called me to say that he is sending a "lung guy" to look at the lung. There's cancer there and he has pneumonia.
I stare at the phone. As if it might bite me.
Cancer. In the lung?
PNEUMONIA?
How were these things missed?
Janet, his sister comes by with his parents, Bettina and Josef. We are there about 10 minutes just catching up on the niceties and small talk when the "Lung Guy" with a long Italian name materializes and whisks Bettina,. Jeanie, Janet and I down the hall for a slide show of his right lung.
Siskell and Ebert would have declined review of this show, that I can guarantee.
We all walked down the hall, Janet gripping my hand tightly - thank god - I thought I was going to pass out.
Upon arriving at a computer terminal at the nurses station, the "lung guy" proceeds to bring up the CAT Scans. A clearly defined mass in the bottom lobe of the right lung. Some spots in addition but this mass is the big concern.
We all traipse back to the room where the "lung guy" says we will most likely do a needle biopsy to see what we are dealing with. Evidently this is done, "awake" and face down on a table while they insert novacaine through a needle into the lung as well as a local anesthetic in the back. Once numbed up well, they insert a HUGE needle through the back into the lung.
Charming.
This is scheduled for the next day.
He can't wait.....
The next morning I get there and good thing because within minutes, he was taken to get an ultrasound on his kidneys. Poor guy was in misery on the stretcher and then we had to wait for half an hour. Once we were in it was fast. He has the kidneys of an 18 year old, we are told.
We get back upstairs to be told we are now moving to the oncology floor. Private room for now. A friend of John's, Bob, has come to visit and helps me pack the room up so we can move quickly.
I should have known better - hurry up and wait!!!!
45 minutes later we are on our way. Once we get to the new room and they get him settled, they call for the biopsy. Can't the poor bastard get any rest?
We go downstairs, We meet the surgeon and he gets wheeled inside. Four minutes later, docs come out and nurse says to me we are going to have reschedule this with Anesthesia. I said OK and John tells me it's because lying on his stomach makes the pain in his leg roughly about a 12 on a scaled of 0-10.
Pay attention to that. It's going to be on the quiz later.
Saturday, May 3, 2014
Chapter 3: Testing... Testing.... 1...2...3.
Had I but known the road we were one would be like this, I may have done things a bit differently.
John had set all the appointments up and started all the necessary approvals in motion. The first one to come up was the Otyrentorologist, Dr Caan.
He went to see him and came home with good news and bad news. The good news is the original site of the Squamous Cell Carcinoma Tumor is still well encapsulated and hadn't spread. Great right? Yes I think so. The bad news is he felt the sac it was contained in was a little heavier than he would like. He wanted to do a needle biopsy at MSK and was setting about to get that scheduled.
While John is making dinner, I look out the window and see the car door on the drivers side is open. From the fourth floor I see this. Maybe that's not OUR car. So I ask him and he looks out the window. Sure enough it's ours. Odd. We proceed to have dinner and I go to choir still feeling that we are not really dealing with a cancer emergency. Call me an optimist but I just didn't have the sense that this was really bad and we were busy ruling out the big C.
The bone scan was next and I had to drive him because his leg was so painful from the sciatica that he couldn't walk long distances let alone drive. In addition the pain medication that he was on was seriously taking it's toll on him.
We arrive early and they take him upstairs and shoot the contrast in him. They tell us to come back in three hours. We live 5 minutes away which is a blessing. I work for the next few hours and then we turn around and go back. They complete the scan and I take him home.
Once I get him in the house and sitting down he takes his pain meds and goes right to sleep. He is in sheer misery - the leg is killing him. I am working but stressing. I finally call the good Dr. Topelevsky but she is on rounds at Our lady of Mercy so who knows when she will call back. Her boss, the owner of the practice, calls me back and says I should take John to the ER if it's that bad. He also feels the electrolytes are in danger and we should go for that as well.
I call Roberta, a friend of ours who is a nurse. She says, yes you need to take him in. I will meet you there.
I wake John up and tell him the doctor thinks we need to go to the ER because the electrolytes are in danger. He gets up and dressed and we drive over.
Roberta and James, Jeanie's husband, meet up with us at the ER. I get John Signed in and settled. They call him very quickly and start testing. They don't let me back there. James and I are in the waiting room and I am updating James who is also a doctor. All of a sudden the locked door to the ER opens and out comes Roberta. How did she get in there? she would have had to pass right by me. .... right?
Well, as a nurse, she talked her way through from the front of the building. Figures. She cracks me up. She updates me on John and his condition.
Finally I send James home because he has to work in the city the next morning. Roberta and I head back to the ER cubicle where John is. He's lying on a table way too short for him and making sure that anyone within earshot knows it. In the meanwhile, they have given him nothing for the pain. Roberta goes to find the Dr on call and harasses him into giving John some Morphine until the testing is done.
An hour later, testing not done, morphine not administered, John is sliding off the stretcher, complaining about it, when his buddy walks in to take him for his Cat Scan. He comes back really quickly and still no doctor and no morphine.
Roberta says she is going to find out what the hell is going on. So she walks over to where the doctor is talking. He's talking about another patient. He looks right at her and tells here she can't stand there.
"I can stand anywhere I want. It's a free country" she responds.
"I can have you thrown out, you know" he says
"But you won't." she counters.
"I'll make you a deal. If I order the morphine, will you go away?" he negotiates
"YES. See how easy that was?" She walks away.
10 minutes later, we had a morphine drip.
I love Roberta. Did I mention that?
That was about 9 PM. Shortly after the doctor arrives to tell us that John either has the beginnings of pneumonia or the end. Either way they are putting him on Moxifloxcin. In addition he has a fractured rib ( No kidding) and he has too much calcium and was dehydrated. Roberta was trying to cheer him up and we were making light hearted jokes when John threw us both out! Oh the humanity!!!
Around Midnight John was admitted to a private room because he was still radioactive from the nuclear bone scan he had had earlier.
Once he was in the room and resting, I left with Roberta but had to drive around the entire complex to find her car.
Thus the first chapter of Roberta and The Contessa's adventure d'excellente begins...
John had set all the appointments up and started all the necessary approvals in motion. The first one to come up was the Otyrentorologist, Dr Caan.
He went to see him and came home with good news and bad news. The good news is the original site of the Squamous Cell Carcinoma Tumor is still well encapsulated and hadn't spread. Great right? Yes I think so. The bad news is he felt the sac it was contained in was a little heavier than he would like. He wanted to do a needle biopsy at MSK and was setting about to get that scheduled.
While John is making dinner, I look out the window and see the car door on the drivers side is open. From the fourth floor I see this. Maybe that's not OUR car. So I ask him and he looks out the window. Sure enough it's ours. Odd. We proceed to have dinner and I go to choir still feeling that we are not really dealing with a cancer emergency. Call me an optimist but I just didn't have the sense that this was really bad and we were busy ruling out the big C.
The bone scan was next and I had to drive him because his leg was so painful from the sciatica that he couldn't walk long distances let alone drive. In addition the pain medication that he was on was seriously taking it's toll on him.
We arrive early and they take him upstairs and shoot the contrast in him. They tell us to come back in three hours. We live 5 minutes away which is a blessing. I work for the next few hours and then we turn around and go back. They complete the scan and I take him home.
Once I get him in the house and sitting down he takes his pain meds and goes right to sleep. He is in sheer misery - the leg is killing him. I am working but stressing. I finally call the good Dr. Topelevsky but she is on rounds at Our lady of Mercy so who knows when she will call back. Her boss, the owner of the practice, calls me back and says I should take John to the ER if it's that bad. He also feels the electrolytes are in danger and we should go for that as well.
I call Roberta, a friend of ours who is a nurse. She says, yes you need to take him in. I will meet you there.
I wake John up and tell him the doctor thinks we need to go to the ER because the electrolytes are in danger. He gets up and dressed and we drive over.
Roberta and James, Jeanie's husband, meet up with us at the ER. I get John Signed in and settled. They call him very quickly and start testing. They don't let me back there. James and I are in the waiting room and I am updating James who is also a doctor. All of a sudden the locked door to the ER opens and out comes Roberta. How did she get in there? she would have had to pass right by me. .... right?
Well, as a nurse, she talked her way through from the front of the building. Figures. She cracks me up. She updates me on John and his condition.
Finally I send James home because he has to work in the city the next morning. Roberta and I head back to the ER cubicle where John is. He's lying on a table way too short for him and making sure that anyone within earshot knows it. In the meanwhile, they have given him nothing for the pain. Roberta goes to find the Dr on call and harasses him into giving John some Morphine until the testing is done.
An hour later, testing not done, morphine not administered, John is sliding off the stretcher, complaining about it, when his buddy walks in to take him for his Cat Scan. He comes back really quickly and still no doctor and no morphine.
Roberta says she is going to find out what the hell is going on. So she walks over to where the doctor is talking. He's talking about another patient. He looks right at her and tells here she can't stand there.
"I can stand anywhere I want. It's a free country" she responds.
"I can have you thrown out, you know" he says
"But you won't." she counters.
"I'll make you a deal. If I order the morphine, will you go away?" he negotiates
"YES. See how easy that was?" She walks away.
10 minutes later, we had a morphine drip.
I love Roberta. Did I mention that?
That was about 9 PM. Shortly after the doctor arrives to tell us that John either has the beginnings of pneumonia or the end. Either way they are putting him on Moxifloxcin. In addition he has a fractured rib ( No kidding) and he has too much calcium and was dehydrated. Roberta was trying to cheer him up and we were making light hearted jokes when John threw us both out! Oh the humanity!!!
Around Midnight John was admitted to a private room because he was still radioactive from the nuclear bone scan he had had earlier.
Once he was in the room and resting, I left with Roberta but had to drive around the entire complex to find her car.
Thus the first chapter of Roberta and The Contessa's adventure d'excellente begins...
Chapter 2: The First Oncologist
Monday Morning.
I can't say that either of us slept well. Fitfully at best. The anticipation was just too much.
We get the call at 9 saying that we have a firm appointment for 1PM. Phew. I set to work getting as many records from various doctors, past and present, transferred.
At 1PM we meet Jeanie, our patient advocate and one of our best friends at the doctors office. John signs in and we wait.
Dr. Topelevsky arrives and we settle in her office. She has reviewed all the data and she looks up at my husband and says "Mr. Cartwright. I have reviewed your records. Why are you here?"
We look at each other and start to answer her. I stop talking and let him take the lead.
"Dr Feldner felt that the Xray showed bone cancer and suggested I see an Oncologist." he said.
"Based on the Xray? or something else?" she asked
"The Xray and my history of cancer" he responded.
She then launched into a long list of questions regarding his current and past health. When all was said and done she said,
" Well Mr. Cartwright, I am going to order another set of blood panels. A bone scan as well. I would also like you to see the Otyrenterologist to verify the original cancer site. In the meantime I am going to ask you to come into the exam room with me so we can start checking you out"
Jeanie and I went out to the waiting room and immediately discussed how much we liked her. Jeanie mentioned to me that she was able to see the radiologist notes on the xray and they said, Lesions on bone consistent with fracture.
Hmm.
So, if that was the note from the radiologist, why did Dr. Feldner interpret that to mean bone cancer?
No matter. We will know based on the test results to come.
I can't say that either of us slept well. Fitfully at best. The anticipation was just too much.
We get the call at 9 saying that we have a firm appointment for 1PM. Phew. I set to work getting as many records from various doctors, past and present, transferred.
At 1PM we meet Jeanie, our patient advocate and one of our best friends at the doctors office. John signs in and we wait.
Dr. Topelevsky arrives and we settle in her office. She has reviewed all the data and she looks up at my husband and says "Mr. Cartwright. I have reviewed your records. Why are you here?"
We look at each other and start to answer her. I stop talking and let him take the lead.
"Dr Feldner felt that the Xray showed bone cancer and suggested I see an Oncologist." he said.
"Based on the Xray? or something else?" she asked
"The Xray and my history of cancer" he responded.
She then launched into a long list of questions regarding his current and past health. When all was said and done she said,
" Well Mr. Cartwright, I am going to order another set of blood panels. A bone scan as well. I would also like you to see the Otyrenterologist to verify the original cancer site. In the meantime I am going to ask you to come into the exam room with me so we can start checking you out"
Jeanie and I went out to the waiting room and immediately discussed how much we liked her. Jeanie mentioned to me that she was able to see the radiologist notes on the xray and they said, Lesions on bone consistent with fracture.
Hmm.
So, if that was the note from the radiologist, why did Dr. Feldner interpret that to mean bone cancer?
No matter. We will know based on the test results to come.
Chapter 1: The Journey begins
Home. Finally.
It's Saturday. I only know this because work, one of life's normal stresses, has been momentarily lifted from my shoulders. It will resume on Monday.
It's been interesting re-establishing a routine after being away for so long. I have not been "away" in the traditional terms ( vacation, business trip, on location for some glamorous film), but have been spending 10-12 hours a day with my husband in the hospital. excluding the 1 hour each way for traveling.
Oh. That's right. You're new here. Let me back track a bit.
In October I married my prince, John. He's the other half of my soul, a most amazing man. We'd been together the better part of 8 years. He had battled and won the war against Squamous Cell Carcinoma of the tonsils back in 2008.
Or so we thought.
On a particularly nasty cold day at the end of January, he had a chest cold. Nothing wacky or weird given the horrific winter we had been having. I suggested he see a doctor. John, being the tough guy that he is, thought he would muscle it through.
It was when he threw out his back shoveling the cars out from under the snow that finally convinced him to get a physical and some scripts for his cough.
A visit to the new primary care physician called for lots of tests and a follow up 6-8 weeks later. Four days after that visit, the results of the blood work were in and YES!!!! No cancer markers! Phew!!!! Awesome news. So what if his cholesterol was a little bit high, and his thyroid or creatine too? Those can be fixed! Doctor says lower your sodium! No problem! WE CAN DO THIS.
Famous last words.
A few weeks later, John begins complaining about shooting pains in his right side. We send him back to the doctor who puts him on LevoFloxcin and sends him for an X-Ray.
The LevoFloxcin is kicking in and the cough is FINALLY going away. YAY! I am hearing my husbands voice coming back! The VIOLENT coughing is starting to be, well, less violent.
We all the doctor to get the results of the xray. The conversation goes like this:
"Hi, This is John CartWright. I'm calling for the results of my Xray."
"Please hold"
"Hi John, Dr Feldner here. We have your results. It looks like Bone Cancer."
"OK. I'll call my Oncologist first thing Monday morning"
I am sitting on the couch next to John with my mouth hanging open. I am shocked. Stunned. Speechless (which, for those of you that know me, is almost unfathomable).
I don't even know what to think, let alone say or act. So I did what I do best. Research.
His Oncologist from 2008 had gone back to her native country. So I had to start over from the drawing board. I signed onto my health insurer's website and started researching oncologists in the area and what hospitals they were affiliated with.
After hours of research, I find 2 in the same practice that have offices one town over in Baldsville and are affiliated with the South Ocean Hospital here and one of the many hospitals affiliated with Memorial Sloane Kettering. Brilliant. We are IN.
I go through the rest of that Saturday in a blur. John wanted to rest because one his many aches and pains was in his right leg. "Sciatica" I thought. Still do. He sent me to one of my best friends houses for dinner, Jeanie.
I leave the house, reluctantly. I get in the van and start driving. I realize that I am still in my pajamas and slippers and I am lost. How did I get lost going to her house? I drive there ALL the time? I pull over, pull out my phone and bring up my GPS. I realize where I am, and get myself turned around. How did I get lost IN MY OWN TOWN?????
My head was up my ass, that's why.
Dinner was exactly what I needed. Good food, great friends, no thinking or in my case, over thinking.
Sunday was spent at church and then with John trying to make him comfortable because the "Sciatica" (more on that later) was making him crazy with pain.
We go to bed that night holding hands and agreeing to face this head on, no matter what the diagnosis is, outcome is, we are going to fight.
It's Saturday. I only know this because work, one of life's normal stresses, has been momentarily lifted from my shoulders. It will resume on Monday.
It's been interesting re-establishing a routine after being away for so long. I have not been "away" in the traditional terms ( vacation, business trip, on location for some glamorous film), but have been spending 10-12 hours a day with my husband in the hospital. excluding the 1 hour each way for traveling.
Oh. That's right. You're new here. Let me back track a bit.
In October I married my prince, John. He's the other half of my soul, a most amazing man. We'd been together the better part of 8 years. He had battled and won the war against Squamous Cell Carcinoma of the tonsils back in 2008.
Or so we thought.
On a particularly nasty cold day at the end of January, he had a chest cold. Nothing wacky or weird given the horrific winter we had been having. I suggested he see a doctor. John, being the tough guy that he is, thought he would muscle it through.
It was when he threw out his back shoveling the cars out from under the snow that finally convinced him to get a physical and some scripts for his cough.
A visit to the new primary care physician called for lots of tests and a follow up 6-8 weeks later. Four days after that visit, the results of the blood work were in and YES!!!! No cancer markers! Phew!!!! Awesome news. So what if his cholesterol was a little bit high, and his thyroid or creatine too? Those can be fixed! Doctor says lower your sodium! No problem! WE CAN DO THIS.
Famous last words.
A few weeks later, John begins complaining about shooting pains in his right side. We send him back to the doctor who puts him on LevoFloxcin and sends him for an X-Ray.
The LevoFloxcin is kicking in and the cough is FINALLY going away. YAY! I am hearing my husbands voice coming back! The VIOLENT coughing is starting to be, well, less violent.
We all the doctor to get the results of the xray. The conversation goes like this:
"Hi, This is John CartWright. I'm calling for the results of my Xray."
"Please hold"
"Hi John, Dr Feldner here. We have your results. It looks like Bone Cancer."
"OK. I'll call my Oncologist first thing Monday morning"
I am sitting on the couch next to John with my mouth hanging open. I am shocked. Stunned. Speechless (which, for those of you that know me, is almost unfathomable).
I don't even know what to think, let alone say or act. So I did what I do best. Research.
His Oncologist from 2008 had gone back to her native country. So I had to start over from the drawing board. I signed onto my health insurer's website and started researching oncologists in the area and what hospitals they were affiliated with.
After hours of research, I find 2 in the same practice that have offices one town over in Baldsville and are affiliated with the South Ocean Hospital here and one of the many hospitals affiliated with Memorial Sloane Kettering. Brilliant. We are IN.
I go through the rest of that Saturday in a blur. John wanted to rest because one his many aches and pains was in his right leg. "Sciatica" I thought. Still do. He sent me to one of my best friends houses for dinner, Jeanie.
I leave the house, reluctantly. I get in the van and start driving. I realize that I am still in my pajamas and slippers and I am lost. How did I get lost going to her house? I drive there ALL the time? I pull over, pull out my phone and bring up my GPS. I realize where I am, and get myself turned around. How did I get lost IN MY OWN TOWN?????
My head was up my ass, that's why.
Dinner was exactly what I needed. Good food, great friends, no thinking or in my case, over thinking.
Sunday was spent at church and then with John trying to make him comfortable because the "Sciatica" (more on that later) was making him crazy with pain.
We go to bed that night holding hands and agreeing to face this head on, no matter what the diagnosis is, outcome is, we are going to fight.