She Didn't Have to be This Way...Final Update

If you are up to date as far as June 2021, scroll down to the December 13th Final Update

If you don't know the story, go get a coffee, it's a bit of a read. 

 

Originally posted in 2017.

Twenty-five-and-bit* years ago I carried My Darling Bride across the threshold. If you’ve never met me, I’m not a 6’4” 275 pound hulk; I’m average height, and about 165 lbs. For better or worse, for richer or poorer, in sickness and in health…

*our 30th anniversary would have been 21 December 2021.

Remember that last part.

Around a year after that blessed event, M.D.B. noticed something wasn’t quite right. In spite of running after 2 kids all day, keeping house and working, she was gaining weight inexplicably. It wasn’t like she was lounging on the couch eating bon-bons all day. I did the groceries then (still do), so I know what was in the house. And we ate the same food, in fact, I usually had seconds. 

Also remember that last part.

Something in her metabolism was off.

A trip (or three) to her Doctor to dig into the problem yielded nothing but frustration. He declared her depressed and prescribed happy pills.

That was it for Doctor 1.

The weight kept rising.

I got her in to see my Doctor, who started fresh. She did some tests, changed her diet, and monitored her for diabetes and other such stuff. After one round of tests, she contacted M.D.B. at work and cautioned her that her iron was dangerously low, and she shouldn’t drive. More tests were ordered. Maybe we were getting somewhere. However, before anything was diagnosed, Doctor 2 announced she was pulling up stakes and moving to another city.

By now her face was changing colour and she was developing a pronounced ‘hump’ on her upper back. The scale kept climbing and the extra weight was taking its toll on her knees so she started to use a cane. She once fell straight down from a small step stool and broke her foot in 3 places (Jones Fracture).

Enter Doctor 3. He decided that her now football sized knees were not arthritic, all she had to do was lose weight. He prescribed a diet clinic, but nothing for her pain. At the diet clinic (Doctor 4) she was prescribed a very high protein/ low carb diet. She gained more weight. During this period was one of the times her knee gave out she fell 2 feet from a crouching position, and broke her leg.

Sometime around this point, at her Fathers 75^th birthday party in 2002 , she used her Mother’s glucose meter and the reading came back off the scale. Tests from Doctor 3 confirmed Diabetes. Here is a new diet. Not much different than our current diet at the time (remember that?). And here is a bunch of meds, but nothing for pain.

More weight was gained and she was deemed ‘morbidly obese’. In spite of our insistence that it was something metabolic, not diet related, Doctor 3 was convinced all she had to do was eat less. But she eats less than me.

Because of her weight, diabetes and moderately high blood pressure, Doctor 3 refers us to Doctor 5, a Cardiologist, to monitor for heart disease.

In between visits to Doctor 5, M.D.B.’s knee gives out and she falls. A bruise develops on her leg, which progresses into an open sore about the size of a quarter. Doctor 3 prescribes antibiotics, but nothing for the pain and inflammation and refuses to send her to an Ortho for her knees. 

By the time she next visits Doctor 5 a number of weeks later, she’s had several rounds of antibiotics and the open wound is now the size of a toonie. Doctor 5 is aghast and has her immediately admitted to the hospital for wound care. Doctor 6 excises the wound, and she spends a few days on intravenous antibiotics. They both send sternly worded letters to Doctor 3. Doctor’s 5 & 6 probably saved her leg, if not her life. 

In the meantime Doctor 5 sends her to a Sleep Clinic (Doctor 7) and a CPAP machine is soon ensconced in our bedroom.

Back to Doctor 3, which by the way, is also an Ordained Minister. This time, M.D.B. in the wheelchair she uses part time. He tries to sell us his book, still refuses to give her anything for the pain, again denies requests to see someone for her knees, and wants her to consider bariatric surgery. Her knees are the size of footballs and she eats less than me, dammit. It’s not her diet!

She has a hump between her shoulders, both knees are so bad she can’t walk without a cane, and often uses a wheelchair, has cellulitis on both legs, her face is purple and she has sleep apnea. 

We found another Doctor. 

Doctor 8 heard our tale of her woe, and decided to start fresh. A large battery of tests were ordered, medications adjusted (still nothing for pain) and follow ups planned. Then he suddenly retired to care for his terminally ill wife.  

Our file is taken over by a Nurse Practitioner in the same office, but for purposes of this essay, he shall be Doctor 9. More tests. A routine Pap smear shows abnormalities. Off to the Gyno, Doctor 10.

Doctor 10 finds unusual thickening of the uterus walls (Hyperplasia). It has to come out, but not until she loses weight.

Doctor 9 orders x-rays on her knees and sends in a referral to an Orthopedic Surgeon, Doctor 11.

Doctor 11 says yes, she needs new knees, but there is a long wait. In the meantime, she gets cortisone. Still no pain meds.

There is a long backlog for knees in our town, so Doctor 9 sends us out of town to see an Arthritis Specialist, Doctor 12. 

Doctor 12 thinks she might have Lupus, orders a bunch of tests. The tests come back negative, so 12 refers us to 13, a Dermatologist.

Doctor 13 says she has Lupus and that the tests were wrong, and orders retests. Same results.

Doctor 13 refers us to Doctor 14, an Internist. 

Doctor 14 orders a fresh battery of tests. He finds something. He finds a high level of Cortisol, the steroid associated with stress. Normal levels are around 40, hers is around 400. The fight-or-flight chemical. Her body was retaining every calorie to be used for mortal combat or to flee in fear. 

Cushing’s Disease.

Wikipedia defines Cushing’s Disease as,”… a collection of signs and symptoms due to prolonged exposure to cortisol. Signs and symptoms may include high blood pressure, abdominal obesity but with thin arms and legs, reddish stretch marks, a round red face, a fat lump between the shoulders, weak muscles, weak bones, acne, and fragile skin that heals poorly.”

Doctor 14 sends us to an Endocrinologist, Doctor 15. 

Doctor 15 works in a clinic with a team of Specialists including 13 & 14. There is also a Psychologist (16), Diabetic Specialist N.P (17), Kinesiologist (18), and Dietician (19)

Doctor 15 sends her for a fresh round of testing, including some special tests, and an MRI. They find a tiny 3 mm tumour on her Pituitary gland.  

Three millimeters.

Doctor 15 orders surgery to remove the tiny tumour. They will go up though her nose and cut it out. This requires an Ear Nose Throat Specialist (20) and a Neurosurgeon (21)

That surgery was a year ago this month in 2016 and was a success. Her Cortisol levels dropped by half overnight. Recovery was long and rough, though. There was severe Steroid withdrawal. The Cortisol masked her real pain and dulled her other senses. Her sense of smell and taste were now hyperactive. Just the smell of food made her nauseous and she couldn’t eat. Mild steroid replacement was prescribed and that relived the withdrawal. But she was in absolute agony, her knees crunched when she walked and she couldn’t take more than a few steps without aid. Pain relievers were finally prescribed! (this is more than 20 years in!) At The Boris Clinic, Doctor 15 and his team (16, 17, 18 & 19) worked closely with us over the next several months to get M.D.B. back to her old self. Because her case was so complex, we came from out of town, and she needed my assistance to get about they went out of their way to schedule us appointments at least on the same day, if not back to back. Sometimes the other Specialists would seek us out just to chat, even if we didn’t have an appointment. We can’t say enough good things about them.

A year later, the ‘hump’ is gone, the weight is melting off, the cellulitis is clear, her colour is normal, her hair is regrowing in the right spots and her Diabetes is gone. Her last two A1C blood tests came back normal even though she hasn’t been on meds for 6 months. Her sleep apnea is also better and Doctor 5, the Cardiologist, has released her as a patient because the rest of her cardiac symptoms are gone. 

A tiny, 3mm tumor.

The diagnosis and cure came too late for her knees though, they are shot. Doctor 11 has had her on his list for over a year by now.

Doctor 10 still wants to remove her lady parts, but she can’t lose enough weight because she can’t walk. So he is still on hold.

Doctor 9 (remember him? The Doctor that’s not a Doctor.) pokes Doctor 11 to try to get a move on her knees. Doctor 11 won’t even return his calls. Her pain is acute, and she has developed a new pain in her abdomen. Doctor 9 (the one who got the ball rolling to end the Cushing’s) goes into action again.

He tracks down several joint-replacement Specialists within an hour drive and we get into one nearby within a few weeks.

Doctor 22 takes one look at her x-rays and the very next day we have a date for replacement only a few months away. New knee on the horizon! (the knee was replaced in 2017 and works great! DJW)

Doctor 9 also refers her to a Pain Management Doctor (23!). He takes one look at her file and decides to forgo the formalities and head straight to the good stuff. She now has some relief. She’s not pain free, but she can manage.

By now Doctor 9 knows we are both frustrated and proactive. He sends M.D.B. for an ultra sound on her abdomen. While I’m watching, the Technician keeps going back to the same spot. The ultra sound reveals a fist sized mass on her kidney. Benign masses are often associated with Cushing’s.

So, Doctor 9 orders an emergency CT Scan sends us to an Urologist. Doctor 24 reviews the CT and determines the mass is on the Adrenal Gland, and orders an MRI for a better look. The MRI confirms the mass is likely calcified adrenaline.  But he works on Kidneys and related stuff. 

Yesterday he tells us he’s referring us to another clinic.

We meet Doctor 25 soon we hope.

Thank goodness Doctor 9 (the Doctor that's not a Doctor) believes us. 

If  Doctor 1 or Doctor 3 had only believed us more than 20 years ago.

She didn’t have to be this way.

 

June 2021 Update:  

Doctor 25 Turned out to be an Oncologist, and confirmed the masses (there are 2 now, one on each adrenal) are not Cancer. 

 

Relief!

 

Doctor 25 sends us to Doctor 26, a Surgeon. 

 

Now we are getting somewhere! 

 

He looks at the masses and says he'll take them out, he'd remove anything. That's his job. But he's not willing to remove them willy-nilly without knowing what the after effects of removing both adrenal glands. 

 

He confers with Doctor 27, an Internist. Together they surmise that they don't know for sure what the pseudo-cysts consist (try saying that out loud) of ...could be dried blood, could be an adrenaline clot from a leak, could be chicken soup (their words!). They are not willing to poke them in fear it will release the contents and we may need Sigourney Weaver as the next Specialist. Conclusion: Morris & Jerome (yes, the pseudo-cysts have names) are staying put for the time being.

By now, her feet were becoming a problem. Bunions and Hammer Toes have become so bad that her toes have actually crossed. (She used to be able to pick up a dime from the floor with her toes.)
 

Doctor 9 (the Doctor that's not a Doctor) runs down a Podiatrist, Doctor 28.

Doctor 28 treats her with plasma injections and comments, "I have never been anyone so much in need of corrective surgery. However you are also the most unsuitable person for surgery due to the underlying conditions, and the inability to heal." 

 

She still has crossed toes.

We trundle on, with routine blood tests and follow ups with Doctor 15 (Remember him, he's the Endocrinologist. For goodness sake, try to keep up!) carry on on a routine basis. Morris & Jerome are clearly getting larger and causing much pain and discomfort. They can't cause pain we're told. Question: if you grew a potato on top of your kidney don't you think it would need to push stuff around to make room for itself? Maybe the potato doesn't hurt, but the displaced parts would certainly complain.

Routine tests in the Fall of 2020 and a virtual follow up with Doctor 15 confirm what we already know. 

 

It's back.

 

Cushing's Disease occurs in one of about every three or four million persons. That would make her one of about 12-25 patients in Canada. Post surgical recurrence occurs in less than 10% of patients. 

 

By the math, that would make her one of less than 5 patients in the U.S.A.

 

More tests, scans and blood work, new meds. You know, the usual. Oh, and finally Doctor 15 agrees to a new CT Scan on Morris & Jerome.

In May 2021, Doctor 15 puts in a call to Doctor 21 (the Neurosurgeon) and Doctor 21 reaches out with us to discuss the options:

• Same type of surgery as before;
  
• An exploratory procedure involving catheters going in from either side of the groin and snaking their way up to either side of the Pituitary Gland to try and pinpoint the exact location of the tumour this time. The resulting surgery to remove the tumour would follow; or,
• Radiation to eradicate the tumour, along with killing the Pituitary Gland.

The end result of any of the options would be replacement hormones in varying quantities for the rest of time. The result of not doing anything would mean that time would be shortened for her.

 

We thanked him for taking the time to explain it all to us and set about to weigh all the options. M.D.B. set about doing what she's good at: researching the procedures through reliable sources like The Mayo Clinic. 

 

In the end she decided that Radiation was the best option for her. Be done with it. While there are no known cases of a second post-surgical recurrence, she doesn't want to be the first in medical history. I fully support her reasoning and decision.

 

A week or so later we get a call from Doctor 21's office setting up a virtual appointment for the following Friday. On the Thursday, we get a call from Doctor 29's office. 

 

Doctor 29? Who is that, you ask?

 

Doctor 29 is the Specialist slated to perform the exploratory catheter procedure...the next Tuesday. She is to report for a CoVid test on Sunday and then Pre-Op on Monday and then to The General on Tuesday for Day Surgery.

 

Wait. What?

 

She hadn't even disclosed her decision to Doctor 21 yet, and everything had been arranged. She informed Doctor 29's office that she wasn't having that procedure and that she had decided to go with radiation instead. Doctor 29 himself called on the Sunday to go over things. He was nonplussed with her decision and tried to sell the procedure, and all it entailed. M.D.B looked him up, and yes, he's the best there is, but she doesn't want to go that route.  

 

On Monday the Hospital called to confirm and was told that it wasn't happening. Also Doctor 29 called back to ask, "Are you sure? Are you really, really sure?" Yes, she is sure. I still have this vision in my mind of a Surgical Team gathered in the O.R. Tuesday a.m. asking where the patient was.

 

On Tuesday, Doctor 21 called to talk things over. She explained to him her reasoning behind going with radiation instead of the exploratory procedure then surgery plan. He respected her decision and appreciated that she took time to look into everything. We had prepared for an argument and were somewhat taken aback. 

As of June 11, 2021, we are waiting to hear from Doctor 30 about radiation treatment.

Remember, if  Doctor 1 or Doctor 3 had only believed us more than 20 25 years ago...she didn't have to be this way.

P.S. Morris & Jerome are next and should be seeking new accommodations. 

 

Final Entry – December 11th, 2021

 

The radiation treatments in June/July were a resounding meh.

We were prepared this time for a steroid crash that never came. Follow up labs showed little change in her elevated levels of Cortisol.  We were pretty sure that Morris and Jerome were the culprits this time, but the Cyberknife (how cool is that name?) Radiation was non-invasive so we went with that first.

Doctor 31, a Surgeon specializing in laser and laparoscopic procedures, was brought on board. The more the merrier. While we never met him (I can’t even remember his name) in person, he reviewed the imaging and tests and we consulted by phone or Zoom.  He agreed that Morris & Jerome had to go. It would mean being on steroids for the rest of her life, but she had been on an overload of steroids for who knows how long by now.  He and Doctor 15 (the Endocrinologist) started putting a plan together.

This requires a fresh round of testing, including a free Cortisol sample. This requires collecting her urine for 24 hours and taking it with us to the lab when we go in for blood work. This time something was very wrong.

There was blood in the sample collector (the ‘hat’). We abandoned the collection and called Doctor 9’s office first thing Monday morning and were in the exam room Tuesday morning. He took a urine sample there and was able to determine there were traces of blood, but we still couldn’t be sure where it was coming from. He ordered tests for urology, colonoscopy (because we weren’t sure) and an internal exam by her Gynecologist (Doctor 10).

In the meantime a Urologist (Doctor 32) and a Gastroenterologist (33) were put on standby by to consult and react as required.  

The first stop was with the Gynecologist in early October; he does an internal exam, removes the IUD that had been in place to help with the Hyperplasia, and takes some samples. This was preceded with an ultrasound and followed up with a CT Scan a few weeks later.

The appointments for consultations with Doctor’s 32 & 33 had been set up, but at least one of them was deferred due to the onset of her bi-annual Bronchitis.

Monday, November 1^st.

At supper time the Gynecologist calls and Alice picks up. She talks (more listening, actually) for a few minutes, says, “Thank you,” hangs up, and busts into tears.

“I have cancer.”

He indicated to Alice that the IUD in place to prevent the Hyperplasia from becoming cancer probably stopped working about a year and half previous, around the same time all out-patient procedures were shut down.  He had already arranged an intake at the Juravinski Cancer Clinic, with the top Gynecologic Oncologist (Doctor 34) in the province. That was scheduled for Friday, November 5^th. Doctor’s 32 & 33 were no longer required.

Tuesday, November 2^nd.  

Alice wakes up later than usual, and after I help her to her chair, her bronchitis is the worst I’ve ever seen it. Her breathing is shallow and laboured, and she just can’t catch her breath. I ask her if she wants to go to the hospital and she says yes. If you know her, you’ll also know that is not the answer I was expecting. Because her legs are so weak I opt to call an ambulance, and I tell the CCAC Dispatcher she is in respiratory distress, which she was. They were here in minutes.

Our hospital ER is very overcrowded, and Paramedics often have to wait hours to off-load patients. There is no room for me in the offload area so I sit in the waiting room reading the book she got me last Christmas. Or at least trying to. By the time they find a bed for her in the hall and it’s after 7:00 pm but I can be with her now. They take her for x-rays and bring her back. She’s on oxygen now and breathing better. After some time the Attending ER Doctor (35) comes to us and says her lungs are a mess, this time it’s Pneumonia. He wants to admit her, but there are no beds so she would be in the ER for a while, maybe longer. She says no, because she has an appointment Thursday and intake at Juravinski on Friday. We were sent home with some puffers, a prescription for antibiotics and, you guessed it, steroids.

Her Thursday appointment was by phone so she kept that one. Friday’s intake had to be rescheduled because she just wasn’t well enough to travel. In fact the next few weeks was a series of appointments for diagnostic and follow up tests and imaging being made then rescheduled or outright cancelled. By the time Juravinski rescheduled her intake for November 24^th (her birthday) she felt well enough to make it. During this time we told very few people about her cancer because truthfully there was nothing to tell. All we knew for sure was it was cancer. We suspected it was related to the Hyperplasia, but we just didn’t have a diagnosis, or stage, or treatment plan, or anything to tell anyone.

Wednesday, November 24^th.

She wakes up to a wave of birthday wishes, has a few sips of coffee (her coffee consumption was waaaay down) some instant breakfast and a few bites of waffles to get some meds down. In fact, her appetite had been so poor the last few weeks she was subsisting mostly on soup and crackers to get her meds down, and even then not enough to take them all every time. Today’s supper was already planned, she wanted surf and turf. The plan was to go from the Juravinski to Red Lobster. I wrap up my work for the day around 10:30 and get her ready to travel. Because her legs were so week she had been using a walker inside the house for a time, and used it as well to get down the ramp to her truck.

We get to the Juravinski in time for her Lab appointment and the intake at the clinic. We were the first patients after lunch. We finally got in about 2:30. I come to find out later that Doctor 34’s usual Clinic Day is Tuesday; she made a special trip for Alice. She comes in and we talk for a while. The imaging and tests she’s reviewed from mid-October indicate that it’s likely cancer of the uterus, possibly endometrial, the lymph nodes in the area are involved and there are some lesions on the lower lobe of the lung. She says its stage 3, but needs more tests to devise a treatment plan. She is referring us to another Hospital specializing in robotic surgery, and more updated imagining and other diagnostic tests.

On the way home, Alice decides we should forgo Red Lobster and she can order the ingredients from Metro for me to make the surf & turf at home. Of course I agreed. Our Daughter and Grand-daughters were coming over for cake anyway, so we could make it a bigger meal. She ate a lobster claw, some of the shrimp fettuccine, some of the seafood soup, and she left her piece of steak for me. She ate enough to get most of her meds down, but not much more. She also had a ¼ of a Boston Crème donut, her favorite.

Thursday and Friday were closer to the recent routine, she spent a lot of time sleeping in her chair with the CPAP on, and eating very little. I made her drink some instant breakfast to try to get some nutrition in her, and fruit juice was used to keep her glucose at acceptable levels (she wore a monitor so it was easy for me to flash it). Saturday our daughter came over to do some house work while I did some things outside and ran a few errands. Sunday our niece’s came to stay with Alice while I did some yard work. By Sunday night she was so weak I had to help her off the chair and help her with the walker. She asked me to help wash her up and wash her hair. “I don’t want to stink when I go to the hospital tomorrow.”

Monday, November 29^th.

Similar morning routine as for the last little while. I had brought in the chemical toilet from the trailer so she doesn’t have to walk to the bathroom. After we get her from her chair to the toilet and back she’s exhausted. I call the ambulance and she doesn’t fight me. This time they find an ER bed for her in a few hours. They get her on oxygen and the Attending Doctor this time (36) orders x-rays. While she’s out getting that done, I get her a drink and a tea biscuit. She picks at it a bit over the course of the day but spends most her time sleeping. The oxygen is helping a lot. After shift change, the new Attending Doctor (37) stops in to talk. She needs care but there are no beds. If he could arrange support and oxygen at home would she rather go home or stay in the ER? In what seemed like minutes someone from Home Support was with us and arrangements were being made, and the oxygen was being arranged. Our daughter, a PSW will meet me at home to help get her in and settled. As a Nurse and a PSW that may have been a retired CFL Linebacker struggle to get Alice in the truck, we all looked at each and didn’t have to speak. This is a bad idea.

When we get home, our daughter helps get Alice out of her truck and into the house. While we didn’t make it as far as her chair, she is sitting on the couch. After the oxygen technician sets everything up, gives us instruction and leaves, our daughter goes home to get some sleep (she has to work at 6:00 am). It’s now after midnight, one last thing; she needs to use the toilet. I slide the porta potty over and make sure it’s at a good height that she can just slide onto it. That works but now another problem; she can’t get off of there and back onto the couch. She has no strength in her legs. After a few attempts at a couple of strategies we decide to do a slow controlled roll onto the floor. That way she can crawl to the stairs and use them to get herself up to a sitting position. It’s worked in the past. Except this time she didn’t even have enough strength in her legs to crawl. I call for help. Two Paramedics try but she couldn’t even help them. They brought in three Firefighters for support. After 4 attempts they get her into her chair. She refuses transport, “What’s the use? There are no beds.” The Paramedic said “No problem. We are not in the business of kidnapping people” I reluctantly sign the refusal. I spend the night making sure she's breathing.

Tuesday, November 30^th.

Same routine as Monday, except she asked for the ambulance sooner. This time they got her a bed in the ER almost immediately, the same space as Monday.

Zone 2, Bed 5.

I’ve already chronicled our time at Brantford General in a letter I’ve sent to the Administration outlining the high level of care she received from this point onward. I don’t need to retype it. The text of this message is below:

 Brant Community Healthcare System

200 Terrace Hill St.,

Brantford, Ontario N3R 1G9

Hello.

My wife, Alice, arrived at ER by Ambulance on Monday morning, November 29th with what we believed to be complications related to her month-long battle with Pneumonia. It turned out to much worse than we thought. Her recently diagnosed Cancer was further advanced than estimated, and was metastasizing rapidly. An attempt to care for her at home with support failed, and we returned Tuesday morning. She would not be leaving BGH.

She was admitted on Tuesday, but with still no beds available upstairs, we became ensconced in the ER. From mid-day Monday to Wednesday morning (with the exception of late Monday evening to Tuesday morning while she was back at home) we occupied the Bed 5 space in what I now call War Zone 2.

After midnight on Wednesday morning things were calm enough in War Zone 2 that I could slip home for a shower and attempt some sleep. The Nursing Staff seized this opportunity to afford my wife some personal care and attention not normally afforded to an ER Patient.

Wednesday morning we were moved to a private room, Fast Track 5, normally reserved for Patients requiring isolation or other care requiring such a space. At the same time she was transferred from a gurney to an actual hospital bed, a much more comfortable solution for someone at her level of pain. It was from here that I could get some respite via our daughter, a PSW.

Late Thursday evening we were moved to a palliative care suite. This afforded the opportunity for family & close friends to share a few last moments with her. It settled her so much. Overnight Thursday she was monitored by our PSW daughter and myself. By mid-day Friday our other children had made it here from Ottawa and Georgia, and we could be together as a Family. This also allowed us to provide care in shifts.

Alice passed peacefully in the very early hours of Sunday December 5th .

The above chronology is offered only as a background for my comments below.

Alice had been a Police Communicator (Dispatcher) for the Hamilton Police Service. I have a background in the Military. We are very attuned with the intensity of activity such as in an over-extended Emergency Room. Nothing happening in there surprised us. Not the NARCAN Recoveries, Dementia Patients, Accident Victims, Diverticulitis Sufferers (I have Diverticulosis so I can relate), Frequent Fliers, et al.

What did surprise us was the high level of performance of the Nursing Teams. Considering the barely contained mayhem they were immersed in, they showed everyone the same high degree of respect, care and understanding. The staff I observed and overheard during our time in War Zone 2 ranged from someone excited about their impending retirement to a recent grad being gently mentored by a senior team member. They showed us a particular amount of compassion, as they knew the prognosis from the outset. My grieving began in Zone 2 and, with everything going on around us, these kind hearts always took the time to listen to me relate stories of Alice, and never once made me feel I was keeping them from a duty or task, which I know I was. At shift change Thursday morning, the staff, knowing I had been there all night again, brought me a reclining treatment chair, a warm blanket, coffee and a bagel and ordered me to get some rest. I have multi-level degenerative disk disease and they recognized the chair acquired from the EMS Holding area was crippling me even further. Once family began arriving, Alice was permitted to have more than one visitor at a time, and I was permitted to manage access.

After transferring to the Palliative Care Suite, the Nursing Team managed to take things up even another notch. I don’t think they were prepared for a family such as ours, but they soon learned how resourceful we are, and how we are more than a family, we are a team. With their support we were allowed to be us for a few last nights with Alice.

It would be impossible to list names, but you have the resources available to you to seek out and properly recognize the Nurses and PSW’s that all went above and beyond the call of duty to comfort Alice, myself and our family in what is a tremendously difficult time.

Our gratitude is beyond measurable.

Regards,

When you count 2 more Doctors seen in the ER and the Palliative Care Doctor, they are 38, 39 and 40, respectively. 

It was just a little more than a month from hearing the 'C' word until she was gone. Her over 25 year struggle was over.

Doctor 9 (the Doctor that's not a Doctor) is credited for setting things in motion to connect us with Doctor 15 (Endocrinologist) and the Team at the Boris Clinic to find and treat the Cushing's Disease. They extended her life by years and to them I am truly grateful.

Somewhere, sometime in this whole ordeal, I had this thought: Doctors should listen more and judge less.

If only Doctor 1 or Doctor 3 had done this…

DJW Out