Learning to Walk Again

“John Paul, may I talk to you outside please?”

I knew it was about to get uncomfortable as I followed the doctor and his colleague out into the hallway.

“Your mother’s disease is progressive and her condition is deteriorating quickly,” he said. “We’ve tried everything we can do, but nothing seems to be working. She doesn’t have much longer now. I suggest that you get her affairs in order.”

I was pretty calm – the conversation was bound to happen one day – but I wasn’t sad. I was angry and frustrated, and my patience had run its course.

The doctor had his say, now it was my turn…

“I want to thank you and your team for trying to help my mother, but I would like to take over her care now. We gave the drug trial a shot and it didn’t work, and I feel that we’ve been chasing symptoms ever since. I want that to end immediately. I would like her off all medication and I want to start supporting her nutritionally with real food and some supplements.”

Both doctors looked at me in bewilderment! It wasn’t what they were expecting to hear. I thought for sure they’d refuse my request outright, but not so. Actually, the response was quite interesting.

“Well, as bad as your mother’s condition is, she still has her wits about her. If she agrees, we’ll make it happen.”

Honestly, I had no idea what my mother was going to say. If she listened to me in the first place, we would’ve never been in this situation. If only I convinced her back then, all this would’ve been avoided, but I lost that tug-of-war. There were just too many forces pulling her to the other side. Here’s how it unfolded.

The Medical Lure

My mother was coasting in 2018. We had everything under control and she was doing great. So good, in fact, that she was given the green light to go to Florida in the winter, and she went!

What once seemed unlikely was now a reality. My mother was spending time with her friends, doing various activities, getting plenty of sunshine, fresh air, walking, aquafitness, all that kind of stuff. She thrived in Florida, but that changed once the new year came around.

My aunt who’d been suffering from Alzheimer’s became unresponsive and was hospitalized. She wasn’t going to make it. My mother rushed back to be with my uncle and aunt during those last few days, and that was very traumatic for her.

Not long after that, my sister’s youngest daughter contracted a serious viral infection and was hospitalized. My mother once again made the trek home. This trip, however, took its toll and my mother’s health started to decline.

After getting some blood work done, my mother was told that her results were “far from ideal,” but apparently, she was a candidate for a new drug trial that could potentially turn things around. Everyone was on board, but me.

“It’s a bad idea,” I said. “Let’s get back on track and do what we did previously to restore your health.”

“What harm can it do?” replied my mom. “I think I’m going to give it a shot. It’ll be okay.”

Clinical Trial Gone Bad

So my mother entered the hospital toward the end of July with the hope that a “magic pill” would cure everything. It didn’t! Things went bad very quickly.

I’m sure you’ve heard the saying “a drug without a side-effect is not a drug!” Well, my mother experienced a number of side-effects and none were positive. One after the other, these drugs and subsequent tests were destroying her health, and the trial drug was doing absolutely nothing to help her cause.

I knew once she entered the hospital that we’d lose all control of her healthcare, but I never imagined it would get this bad.

One day, I asked the nurse to print off a list of my mom’s meds. It was 3 pages long! I went to the cafeteria and started doing some research. I made notes on the use, side-effects, and interactions of all the drugs. There were several “anti” drugs (antibiotics, antiviral, antifungal, antithrombotic, antiemetic, antacids), along with diuretics, various painkillers, laxatives, and the list goes on. It was mind-boggling!

list of medications

So many things did not make sense to me. For instance, one drug was used to manage my mother’s spleen, but this drug had a tendency to lower hemoglobin levels, which causes energy levels to tank. My mother’s hemoglobin levels were already low, so they had to give her regular blood transfusions to bump those levels back up.

Since there’s a risk of infection with blood transfusions, she was given antibiotics and antiviral drugs. The antibiotics (she was on several) were wreaking havoc on her gut, which prompted the use of an antifungal drug and antacids. Since my mom was in a boatload of pain, powerful painkillers were used which caused constipation, so laxatives were prescribed.

The antacids were impairing the ability to digest and absorb nutrients, the laxatives were dehydrating her, and diuretics were prescribed to deal with all the IV fluids, so electrolytes were required. And she was on blood thinners to deal with the IV infusions, which promoted bleeding and bruising.

Fluid overload causes rapid heartbeat and shortness of breath (trouble breathing in general) which are also side-effects of the first drug that I mentioned, so more drugs and respiratory support were necessary to address those issues.

Some of these drugs impair the ability to heal (keep in mind that my mother’s back was filled with bedsores) and can alter muscle function and promote weakness. In other words, you get to a point where you just can’t move any more!

It was just a wild west of “take this for that” nonsense, and my mother was paying dearly for it. If you or I were on the same set of drugs, the response would be no different. My mother was a Guinea pig. Show me a study that demonstrates how all these drugs (21 at that time) interact with each other. There are none! And this n=1 experiment was obviously not working.

One more thing, all of the drugs mentioned above dealt with symptoms. None of them addressed the core issue, that is, my mother’s cancer!

A Rare Visit

It was the morning of Thursday, September 5, 2019. Normally, I see a number of clients on the road, but this day turned out to be a bit different.

It was 7:45 a.m. I just finished with a client and noticed a bunch of cancellations on my phone. All of a sudden, my schedule opened up. Since I was downtown already, I figured that I would pay my mother a visit at the hospital. I usually went at night and during the day on the weekends so this visit was rare, but it proved to be pivotal. This was the turning point and it all happened by chance.

I met many of the doctors and teams that were working with my mother. By the time I got there at night, they were usually gone and most of them didn’t work on the weekend. So this was the first time that I was able to have a serious chat with them, and I voiced my concerns about the treatments.

And that’s when I met my mother’s oncologist face-to-face for the first time… and that’s when we went into the hallway for that little chat… and this is what happened when we came back into the room.

One Word Answer

The nurse brought my mother to the edge of the bed and helped to support her as she tried to sit up. (It wasn’t easy to move my mom at this point. She lost a lot of her functioning and was very weak.) As hard as my mom tried, she could not keep herself up. She was slouched over with her forearms resting on her legs. Pale, drawn and breathing rapidly, she couldn’t stay in that position for long.

I walked over and kneeled in front of her so she could see my face. The doctors were standing above me, and the nurse was holding her in place.

I looked straight into her eyes and said, “Mom, I don’t want to fight with your doctors. You’re not doing well. We gave this a shot – it didn’t work. Let me help you now. With your permission, I would like you to stop all the medication and try some other things. Is that okay?”

mom's red eye

For a moment there was silence. Everyone was staring at my mom waiting for her reply. I could see that she was scared and confused, but she knew she was backed into a corner. This was her only chance out. She put her trust in me before; it was time to do it again.

“Okay.”

And with that single word, everything changed. The doctor snapped his fingers and the meds stopped. Well, most meds stopped, some were weaned off, and any future drug orders would have to get my approval.

For the most part, the power was back in our hands now, not completely mind you (that would take a few more weeks to occur), but enough to possibly get the job done if my mother was able to weather the storm that was about to come.

We knew there had to be an adjustment period. You can’t stop that type of regimen without a reaction, and boy was there a reaction! That weekend was bad. We didn’t think she was going to make it. In fact, I had scheduled an appointment for the following Saturday to make the funeral arrangements.

My mother survived… then the pendulum swung in our favor… and I canceled that damn appointment!

The Turnaround

I put a detailed plan together. My sister who’d been by my mother’s side 24/7 implemented the plan, and my wife and I brought supplies daily. I won’t get into specifics, just know that there was a lot of bone broth, liver and supplements.

Gradually, my mother’s condition improved. Key blood markers were starting to rise. She was gaining strength, her energy increased, and her appetite improved. Her mood was getting better, she wanted to move more, and all of a sudden, a new thought entered her mind: “I want to go home!”

The drug trial was long over. Of course, the damage was done, but the resurgence after we stopped the medications was promising. The “scary” episodes were minimal now. Going home was looking more and more like a possibility.

The doctors were encouraging my mother to enter a hospice, but we figured that we could manage it at home as long as we had the proper bed/mattress, supplies, and support. And really, the only way we were going to attack the core issue with alternative treatments was to get her home.

On September 25, 2019, that wish was granted. My mother was released from the hospital and brought home by ambulance.

A Breath of Fresh Air

Returning back home was quite liberating for my mother, yet it presented many challenges. It wasn’t easy, but it gave us the freedom to do things on our terms.

Again, I won’t get into all the details. Just know that my mother was put on a daily schedule that included physical activity, a dietary plan with key supplements, and three integral treatments: high-dose oral and IV vitamin C, mistletoe therapy, and CBD oil.

Mistletoe Therapy

These “alternative” treatments are used to help attack cancer, improve hemoglobin levels, fight infection, heal wounds, manage pain, and improve sleep. It took some trial and error to find the right dose for my mom’s individual needs, but I’ve had the help of a great naturopath and the support of a very caring palliative doctor.

The first time my mother got out of the house was January 16, 2020. It took that long to heal many of the bedsores so that she could sit long enough to receive the IV treatment. That was one of the many challenges we faced throughout the ordeal. It was exhilarating for my mother to breathe in all that fresh air after months of being cooped up inside.

A New Chapter Begins

Today my mother turns 68 years old. She wasn’t expected to make it this far. The doctors may have given up on her, but we never did, and we’re hoping to celebrate many more birthdays with her.

My mother was taught a hard lesson from this experience: There’s no magic pill!

The hospital stay took its toll. Fluid overload, pulmonary edema, hypoxia, cardiomyopathy, deep vein thrombosis, knee joint effusion, pneumonia, and marked splenomegaly are some of the technical stuff that happened.

In addition to the various respiratory and heart issues, my mother’s back was riddled with bedsores, and she was in constant excruciating pain.

The “losses” hurt just as bad: she lost her hearing, ability to move (she couldn’t even roll over in bed), all bladder and bowel control (she was on a catheter), ability to eat solid foods, and even consciousness at times. She was completely dependent on others.

It hasn’t been all roses since being home either. There’ve been all sorts of setbacks along the way: migrating pain, swelling, bruising, bleeding, eye and ear issues, heart palpitations, infections, insomnia, constipation, and vertigo.

And as I mentioned earlier, there were periods where my mother couldn’t move or sit for very long, which delayed our out-of-home IV treatments, but once that improved, we made it happen and it’s helped immensely. There’s only one more bedsore to go.

My Hippocratic Oath

I’ve said it a million times and I’ll say it again: Lifestyle trumps everything! That’s what I preach and advocate on a daily basis. Always exhaust natural means first before you resort to drugs. And even then, if the standard approach doesn’t work, there are always other options that you can pursue. Never give up hope!

There are many powerful alternative and complementary therapies that can be used if the conventional medical approach isn’t working. We can’t dismiss these methods just because they’re not available to doctors in hospitals, and we can’t wait too long to try them. It may be too little, too late at that point.

I have no idea what’ll happen from here on out. I don’t know what’s going on “under the hood.” That cancer can be growing and spreading like a weed on the inside, but on the outside, things look positive so far.

My mother is moving toward being independent and back to her former self before this whole ordeal began. It’ll take time and a lot of work to get there. This COVID-19 shutdown won’t help the cause though. It’s claimed one of our key treatments as a “non-essential” service! We need to weather the storm once again.

Who knows what the future will bring? For now, my mother is alive and well, and she walks every day.

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