- 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.
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 1st.
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 5th. Doctor’s 32 & 33 were no longer required.
Tuesday, November 2nd.
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 24th (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 24th.
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 29th.
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 30th.
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