Healthcare update

I've been reading about everyone and their healthcare issues. I hear you. Between getting things done, and managing our health, things sure can get busy. 

Dog tick or moose/winter tick

May 6th we had captured a tick on my arm with a piece of tape.  Sending off the photo to eTick, they told me it was either a Dermacentor variabilis (American dog tick), or Dermacentor albipictus (winter or moose tick). Neither transmit Lyme Disease. Interesting stuff.

I decided to look at Joe Brian's appointments. He has had ~124 appointments since 2013:

PART CXXIV – Bone Mineral Density test #9, Mar. 19. Maybe in prep for going off Lupron injections in summer. This includes quarterly PSA and Lupron injections. The PSA tests have gone down to once every 6 months.  

The Lupron keeps the metastasized cancer cells from growing. 

Prostate cancer tests

Bone Mineral Density Scan #9 March, 2026

CAT scan #8, 2021

Ultrasound #4, 2018

Biopsy #2, 2015

Colonoscopy 2015

Have you heard of PocketHealth?

We are really concerned with health and healthcare. COVID–19 has truly complicated the process of healthcare, which we understand, but this is a new mystery. We have been managing prostate cancer since 2011, his robotic surgery was Jan., 2014 (see photo, left!) in Ottawa. It metastasized, they found it, and watch it with tests, and treatment began Oct. 8, 2014. So far, so good. 

Joseph Brian (JB) takes a PSA test quarterly, prior to his Lupron injection. If any numbers change, we will take a different approach. I've tracked his test results. We used to have to meet with a doctor to have them interpret the results. Now, LifeLabs (a for-profit) uploads the data to a website, often within 24 hours. It is such a relief – you just want to know. The trick was figuring out how to access LifeLabs online to make an appointment due to COVID. That was a lesson.

When there was an imaging scan at Smiths Falls Hospital, they would put the results on a DVD, and we would take it to our doctor in Ottawa Health Unit. The rules are that we have the tests in our Health Unit, if possible, and then meet up with the doctor in Ottawa.

Our test results, called imaging results, used to be sent electronically (or faxed?) from our healthcare unit here in Lanark West's LGLDHU to both our local GP, and the urologist/surgeon in Ottawa's health unit. Or, we would take a copy with us if we could. We have learned to make copies of all tests. Our GP in Perth has been really good supporting us with this.

LGLDHU COVID cases are rising

We are in the Lanark West area
of the 5 that make up our unit.
(There are 34 health units in Ontario.) 

From October 2013 until 2019, JB has had 21 tests. They established baseline data and found the metastasis: 

• 5 Bone Density Scans,
• 8 CT Scans, 
• 4 ultrasounds, 
• a cystoscopy, 
• a colonoscopy (2013), 
• 2 MRIs. (2013 and 2015).  

The imaging tests can happen here in Perth, or Smiths Falls, or in an Ottawa hospital, in enough time for the results to get to our surgeon. Following that, we meet with the urologist/surgeon in Ottawa (Dr. Cagiannos). Treating and managing prostate cancer is not easy. The most important thing we've found is to ensure that Dr. C. has the data prior to our appointment with him in Ottawa. It is crucial.

Apparently, JB's health records are now being put into a new site called PocketHealth. They were the ones demanding his vaccine status. We didn't give the hospital permission for them to release our health records to PocketHealth. It turns out, in order to share our health records with various providers, we register online with PocketHealth, and have to pay $5 a pop to forward it. 

Why do we have to pay to access our health records? We have universal healthcare, and have not paid anything for tests. We do pay for hospital parking ($13/visit), which is another issue.

From our local hospital website, which no one told us about: 

• Pocket Health - Download details on how you can access your imaging records

Please note that Perth & Smiths Falls District Hospital no longer releases imaging records via CD and provides imaging records to patients and their care providers only through secure, online access. If you wish to pick up an Access Page which will provide your care provider with secure online access to your imaging records, please visit the Diagnostic Imaging Department from 8:15am–3:45pm weekdays, or we can fax this access page directly to your care provider. If you prefer not to visit the hospital, you can also easily access and share your imaging records online by visiting Pocket Health.

PocketHealth is a for-profit, and in the news: 

• Entrepreneurs build one-of-a-kind medical platform
• PocketHealth raises $9.2 million in financing.

The best information we got came from a drawing by Dr. C! I labelled it to better understand it.

Lupron injections quarterly

medical imaging: results on a DVD

one of his scans

Prostate cancer in a time of COVID–19

OK, let me vent, as I am wont to do! This is our life. Last month JB had a COVID–19 test. It was quite the deal. (BTW – I worked 20 minutes on this post at 6 a.m., and 'New Blogger' wouldn't save it. Ticked me off, I tell you.) This month he needed a PSA test.

This has been our quarterly adventure, for several years:

a) book a PSA test (mid-June)

b) check the PSA test results online (a day or so later)

c) if all is well: order the injection from our pharmacy (10 days before the injection date)

c) arrange for the injection either at the GPs office or our local ER (July).

It has to be this order of operations. If anything has changed, indicated by the PSA test results, then it is possibly an appointment in Ottawa, and an examination of the treatment plan. These are the test results so far. I graphed them. It begins at 0 where JB had surgery. His PSA should have been zero, but they didn't get it all with the robotic surgery. After his PSA tests rose enough, we began a course of quarterly Lupron injections. His PSA tests dropped dramatically to >0.008.

The Winter injection was done in the GP's parking lot, full PPE gear, in a snowstorm. This one won't be so bad!

PSA Test

The spring project is to get hubby's quarterly PSA test, prior to his quarterly injection/cancer treatment, an injection. I tried online. It did NOT go well. I tried 5 times. I could not book an appointment online.

 

JB phoned, and there was a message, "Due to extreme volumes we are not answering phones at this time."  He decided to just show up and hope for the best.

PSA Test June 16 

Now, we don't pay anything for tests that are on the OHIP list. Yet, LifeLabs is a for-profit company, collecting our tax dollars, to provide these services. They were woefully understaffed, with only two women. They said it was due to COVID–19. Presumably, staff have it, as well. 

9:15 a.m. – He left to try a line up. There were about 6 people inside the Lab with 9:30 appointments. The process is slow. Most of the customers had masks on, and were seniors. There was a 45 min wait, with 10 people outside lined up in the sun. JB made the suggestion to move the line up to shade! All followed. (He used to be a manager!)

What irks us is that they haven't even hired a receptionist, to relieve the pressure on the two nurses. Only two of them dealing with 15 - 20 patients an hour.

They closed up at 11 a.m. for lunch, taking in the one person left who'd had an appointment. By then, there were more people in line. 

In the meantime, I managed two phone calls demanding I pay up, or I will be prosecuted. Thankfully, we pay all our charge cards every month. I knew it was a scam. The second robo call voice finished with, "Have a blessed day." I sat and snorted, while Josee sniggered, as well. 

[spam call #1 if you are curious!]

By 11:15 the test was done and he was home. Both arms, he has small veins.

Phase one is complete. We now wait to see the results online. In the meantime, we put it out of our minds until the next step.

UPDATE: This morning we checked online, and his PSA is stable at >0.008. This means that the Lupron is still working, keeping the prostate cancer at bay. We are good.

Next stage: Lupron injection.

Healthcare visit #63: naturopath

We had another healthcare appointment with Dr. Jenn, hubby's naturopath. Not to bore you, but it helps me to write it down, and organize it, and understand it all.

The purpose of this meeting was an update on recent tests (Bone scan, CT Scan, PSA, ultrasound), and anti-androgen intermittent therapy.

JB handed Dr. Jenn all the reports we had, a hard copy is a good thing. I heartily recommend you do this. She was impressed with his organization!

Since his surgery to remove the cancer cells (Jan., 2014), we've been watching and waiting. This included going to a naturopath, with the understanding that they didn't get all of the cells she's been giving him immunity boosters. Also, he has immunity boosters, and supplements to help his food intolerances (dairy, yeast, eggs), which is why we went to her in the first place!

Anti-hormone therapy began last Wednesday (Aug. 23), with pills. In a couple of weeks we'll go to the doctor, taking the medication we pick up at the pharmacy, and they'll do the deed, the injection. This will happen every three months.

(His treatment for mitigating cancer is based on excellent research, by Canadian researchers, who determine the course of action. It would be different if his cancer had progressed, as it often does, to bone cancer. This isn't the case. His cancer cells are limited to his lymph nodes in his groin, near the prostate site.)

Dr. Jenn

We went back to Dr. Jenn, and handed over report after report, she stapled them, taking notes on her laptop. The good news is, his cholesterol is down, he's reduced his meds for that. While the tests showed he has a small gallstone, Dr. Jenn said that probably with crappy diet he'd have pain. He doesn't!

Side effects of Treatment
Fatigue, lethargy, bone loss, calcium, anemia, weight gain less common. Hot flashes. Won't preclude activities, fully expect doing these (therapeutic riding volunteer, Meals on Wheels).

His weight is down 10 kg. through hard work and self-discipline. She asked which margarine he used. With his food intolerances, he's on a Non-dairy, vegan diet, with meat, no yeast. She suggested we keep hormone exposure minimal by eating organic meat.

The drive in was quite the thing. This trucker passing several vehicles on highway #15. I tweeted the photo to the company. This is scary.

There was a little girl with her mom in the grocery store parking lot, who looked a lot like our grandie in Vancouver! We stopped for some of hubby's favourite fake cheese in Carleton Place!

I redid his daily chart, with tweaking from Dr. Jenn's advice during this visit. "Mushrooms" are a mushroom complex, made from reishi, shiitake, maitake mushrooms, which mitigate side effects of the anti-hormone treatments. "Trident" is an Omega 3 supplement. Probiotics are ultra antioxidants. This is over and above his healthcare visits, which we get through Canadian universal healthcare. The medications we must pay for. The anti-hormone injection kits cost $1100 per dose. As a senior over age 65, he only pays $20 for this (Ontario Drug Benefit Program). There is much controversy in the US, where the government does not control drug prices. 
"In the U.S, the cost of insulin has dramatically increased. Prices for Humalog, a rapid-acting insulin, has grown 700 per cent since 1996, The Washington Post reported."

Crappy photos in the waiting room from the iPad, upon which I take notes. It's in a exercise facility! They usually have a pithy saying!

Happy anniversary to us!

Hubby brought me some Close Eyes on Monday. It was a surprise! Our anniversary was Tuesday, be we had stuff to do.

We 'celebrated' by going into a 6-mos. regular appointment to check out the progress of his prostate cancer.

I don't know where the time went!

Happy anniversary to us, 
Saturday, Aug. 22nd, 2002!

Off we went, into the city. First we had lunch with Caitlin. Then, off we went for appointment #63, this one with the urologist.

A storm was brewing!

We made it into the hospital by 1:09 p.m., for a 1:15 appointment. The waiting room moved well. There were 3 or 4 specialists working. We went into the room at 1:23.

This is the bag my dear friend, Jean, made for my 60th birthday! It hold the iPad and my sketching materials. I did a silly sketch whilst waiting.

While the bone scan showed his cancer hasn't metastasized into his bones, the CT Scan did show that his lymph nodes are enlarged. He's going to start hormone therapy in September. This treatment could give us another ten years. This is good news. We're going to go with intermittent hormone therapy, monitoring the PSA, and when the injections lower the PSA count, we'll stop for about 18 - 24 months. Eventually, these injections won't keep the PSA cancer cells at bay. They figure a way around that. In the meantime, we'll be having injections in the city every 3 months. There will be some side effects, but not too onerous.

Also, we had the opportunity to participate in one of two studies. There is one that will examine lifestyle (exercise, nutrition, etc.) and how well the injections work. 

We know how well these basic lifestyle measures work for all of us: watching our weight, exercising, eating properly, sleep hygiene, limit stress, watch your blood pressure, sleep, laugh, socialize, think, and enjoy life. It'll be interesting to see what happens. It's a questionnaire filled in each time we visit for the hormone therapy

Finishing with the doctor, we arrived back in the parking lot, ready for the trip home.

We skedaddled out of the city, done all by Back in, through highway #43, slow going with road work!

Off to the drug store to drop off the prescription of the doc. Perth had some rain! The parking lot was flooded.

 

Dinner in town!

 

Home to quietly watch TV!