Introduction

I’m very passionate, motivated, and inspired by being able to help others, uplift others, and offer my value and my voice.

One of my hobbies is being out in nature and walking.

Most people know me from my podcast, Kut2ThaChase, [where] friends, family, [and] professional colleagues talk about things that impact their ability to thrive. We’ve been known worldwide [for] bringing forth inspirational stories of hope, motivation, and triumph over challenges and adversity.

Other people know me [from] my project management consultancy firm where we’ve supported a lot of Fortune 500 companies all over the world.

My application company called Tru-Spot is an augmented reality program developed for fans to view concerts, movies, or television programs worldwide without having to travel.

I reached out to my spine management doctor. He realized that the case was pretty severe. He poked and prodded and a couple of times, I said, “Please don’t touch me there again,” because I was in such excruciating pain. He said, “I need to get you over for an MRI.”

They ran the MRI [with] no contrast. They identified a mass. They didn’t know if it was cancerous or not so they wanted to schedule me for a second MRI, which would be done with contrast.

At that point, I started hearing terms like multiple myeloma and lymphoma, not wrapping my head around that this could be cancer. I just figured, I can have surgery, have whatever removed, and go on with my life.

As we went through the next series of tests, we quickly realized that this was beyond the control [of the] two doctors I had previously seen.

My back pain started in [the] lower right back where my back connects to my hip area. The tumor, that was about the size of a grape and as long as an egg, already protruded through my bone. It was cutting across my sciatic nerve, [which] inhibited me from being able to walk. On top of that, having such a huge amount of pain radiating throughout my entire body made it difficult for any type of mobility.

I saw my primary care physician [and] my spine management specialist within 48 hours. I had the first MRI done within 96 hours. The second MRI took me about two and a half to three weeks.

Once we had the second MRI, it was a matter of trying to find an oncologist that would be able to see me right away, which took a little bit of time as well.

Having to find a new oncologist

As we went down that path, his friend decided that they were not going to accept my insurance, which was a national healthcare plan. For lack of a better term, it was a bunch of bollocks that we had to go through.

We were very frustrated. We’re back trying to call around, see who can expeditiously see us, and get over the hurdle of our insurance.

We found an oncologist in San Antonio on the third or fourth try. It took about 72 hours.

Once we had that first consultation, everything that they needed to run again was run within the next 48 hours — bone marrow biopsy, extensive blood work, PET scans, you name it. 

I was always a healthy individual — never really had a lot of health issues, maintain very good physical fitness, never had a broken bone. I’m put into the throes of the medical industry, not really truly knowing how to navigate besides paying [my] insurance premium and things that we normally do just as a sense of comfort. Now I’m faced with this head-on. It was very, very scary at the time.

Knowing about myeloma

At the time, my knowledge [of] the disease was very, very low. I was not familiar. I’ve heard lymphoma and things like that but not really paid attention to the severity and what people go through.

Things were being thrown at us at an accelerated pace, like being on a roller coaster and feeling like you’re free-falling indefinitely. We knew that the first thing we need to do is get ourselves educated and get ourselves up to speed.

Reaction to the cancer diagnosis

Initially, [when it came] from my spine management doctor, we took it with a grain of salt. July is when I was officially diagnosed [with] multiple myeloma, IgA kappa, 17p deletion, [and] two sub-mutated genes, which put me at high risk.

My oncologist said, “Mr. and Mrs. Proctor, you need to get your affairs in order.” That broke the camel’s back for us because no one had ever said that.

We had limited time to process everything because, in the second breath, she said, “We need to start you on chemo treatment right away.” This was on a Friday. We were told the diagnosis right after my bone marrow biopsy and I started chemo the following week.

Breaking the news to the family

My wife and I were trying to maintain a strong persona, trying to maintain the support and love that we have for each other. But it was hard. It was really, really hard.

We started trying to think about what do we do next. Do we have enough financial means to get us through this? Do we have the family support? We hadn’t even really told our family at that point. We were still in shock and trying to digest and understand how we would move forward with everything that was going on.

I don’t think it was until the day before I had treatment [when] we reached out to all of our family and decided to let them know what was going on.

The mental anguish of cancer

You get caught up in this turbulent cycle, trying to figure out what’s next. For us, getting the cancer abated was the very first step.

I was going to be hooked up to an IV for two and a half months, trying to get my numbers down, and ensuring that everything was back within range before we could move on to the next step.

We were spending a lot of time researching, reaching out to Facebook groups, and having different types of discussions with folks. At the very beginning, we were not thinking about the stem cell transplant or any of those things downstream because it was just too hard without getting through this first cycle.

How quickly can we get the cancer abated? How quickly can we get the pain diminished? How quickly could I get back on my feet and be able to function again? How quickly could I get a good night’s rest and be able to sleep horizontally and not vertically because of the way the pain radiated through my body? How do we survive financially?

There was a plethora of things that we were trying to process within the first three months, well before we got to the second phase of the stem cell transplant.

You think, I’m paying my insurance so I should be covered. You think that everything’s going to be handled based on the fact of you doing what you’re supposed to do as a customer, which is making sure your premiums are paid.

What you don’t realize is that they’re going to take their sweet time. You’ve never been this ill before. They see your bills coming in so they’re going to do an excruciating, deep-dive audit. Eventually, you hit your ceiling.

My insurance was based on a 70/30 split. Even though I met my deductible of $15,000, I was still responsible for 30% of my medical bills. When you start adding up 30% of $22,500 a week, it becomes a financially toxic situation.

I had a mid-average coverage with my provider and certainly thought that was going to be enough. But three and a half months in, they said, “You’re very close to hitting your ceiling.” It was very discouraging.

You start throwing your hands up. What do I do now? If I’m going to go through a stem cell transplant, what do I do? On top of all of the medical costs that I’m already dealing with, that’s going to be extremely expensive. My insurance company covered their portion, but there were a lot of out-of-pocket expenses.

Dealing with insurance while undergoing cancer treatment

Don’t give up. Don’t ever give up. For me, it was about getting locked in. It was about transforming my mind beyond the pain. It was about utilizing all of the professional skills that I have and bring those into the fold as a patient.

My background has been in project management. I had to take those skills and apply those to my wife. There was only a limited capacity that I had for brain power and energy that I could stay focused on. I helped her become the project manager and I was the project.

We divided up roles and responsibilities. It was up to her to talk with the doctors, look at the labs, run the trend analysis, and chart out symptoms, discomforts, ailments, and pains that I was telling her about so these would be discussions that we could have with our doctors.

For me, it was all about trying to survive six hours per day every single day of the two and a half months, and just getting through the harsh treatment. Then making those arduous follow-up phone calls to the insurance companies.

In the beginning, that was very instrumental in helping us not have so much burden on each other. We knew our roles and responsibilities.

It was just as hard on her being the caregiver, seeing her husband suffer and have this disease, and watching that on a day-by-day basis.

A few friends said, “You’re in a dark place right now. You guys need to sit down, come up with your strategy, and you guys are going to come out better. It’s going to take you guys getting over this dark place because it’s all overwhelming.” It was like a tsunami had taken over and we were still swimming, trying to figure out if we were going to be able to make it to the surface for air.

Side effects of treatment

Early on, because of the dexamethasone, I was dealing with a lot of insomnia [and] not able to rest very comfortably. I was only on 8 mg per day but that was probably way more than I ever wanted to take in a single shot.

I was dealing with all types of ailments [from] the bone lesions that I had throughout my body. My rib cage, my chest, and down the right side of my leg felt excruciating bone pain from where the disease had just really attacked my body. Those were extremely discomforting.

Besides those, just dealing with chemo going through your body. Nausea, vomiting, [and] various things that your body cycles through. Psychologically, you’re freaking out because you just don’t know if this is normal.

My doctor said, “These things are going to occur, but they shouldn’t persist. They should clear up. Things should start to get back to normal once they flush through your body.”

I didn’t deal with a lot of neuropathy. My wife and I spent a lot of time researching the disease and looking at natural things that my body needed to have to recover from the chemo as quickly as possible. We started instituting a lot of those regimens and those things were able to help.

I was in pretty bad shape until I achieved remission. My body was going through a lot of physical transformation that I had never experienced ever before, primarily getting rid of the disease and eradicating it from my body.

Getting the stem cell transplant covered

We were still in the throes of dealing with the financial components. If we reached our ceiling, what was our insurance company going to cover with regard to our stem cell transplant?

We received that letter that said they will cover the transplant, but if there are any complications after discharge, then I’m on my own. It’s going to be out of pocket. I was appalled when I got that letter.

Because I’m a veteran, we were trying to get the VA hospital to step in. We were trying to get approval. We had two parallel paths going simultaneously.

The VA stepped in and said they will cover all transplant costs and post-maintenance costs for up to two years. That was probably one of the best days, knowing that we were not going to have that financial burden.

Stem cell transplant process

The transplant got delayed until February 2022, which pushed me into another calendar year, which also pushed me into another deductible. Luckily, with the VA being there, it was a blessing for us to move forward.

I checked into the hospital on February 8th where I was administered the melphalan. February 9th is when my transplant occurred. I stayed in the hospital for approximately 11 days.

We talked with the doctor, “You collected 8 million stem cells. How many stem cells are we going to put back into me?” My doctors said, “We think we’re going to go with two, two and a half, no more than 3 million stem cells.”

We started trying to wrap our heads around it, not understanding all of the science but knowing that if I had a re-occurrence, I would have X number of stem cells in the bank.

They came in with my stem cells. The nurse practitioner said, “Mr. Proctor, we’re going to put 4 million stem cells back into you.” My wife and I looked at each other and said, “Is that too much? We were told no more than three and you’re putting in another million. What is that going to do to me?”

After going through it, it helped me recover, but the roller coaster ride that I had to deal with was just horrible.

When no one’s bringing you any answers that you can wrap your mind around, all logical premises or notions go out the door. What do I have to rely upon if I can’t trust modern medicine? You only can rely on faith.

Every time, they came into my room and said, “We’re going to take you down. We’re going to run this test. We’re doing this. We’re doing that. We’re taking your blood. We’re checking for this. We’re checking for that. Sorry, Mr. Proctor, we don’t have an answer for you.”

If I wasn’t with fever, I think I would have said, “You know what? Let me out of here.” It was so frustrating dealing with inconclusive information.

I had so many doctors checking on me all the time because everybody was puzzled as to what was happening.

My private transplant doctor and the hospital doctor were at odds with each other. You could see the friction and intensity building up between them. One’s saying, “We may have to give him a blood transfusion if we can’t get his fever down,” and all these other things.

My wife and I said, “We don’t want a blood transfusion if my counts are where they need to be.” At the time, we didn’t know anything that can resolve this. They kept me on a slow drip to keep my fever under control.

Finally, around the seventh day, they came in and said, “We believe this is engraftment syndrome and we’re hoping that this will run its course,” considering that we were now approaching day 21 in the whole process. If my fever was kept under control without the drugs they were giving me, then they would release me.

Post-stem cell transplant

I get home and the only thing I want to do is sleep. I’m forcing myself to eat, drink, and rest. I only walked 15 miles throughout March. That’s how much energy I had.

As April began to roll around, my wife said, “Let’s see if we can get you out of the house. Let’s walk around the neighborhood and see how far you can walk.”

My doctors were calling and checking in on me. “Mr. Proctor, the more you can exercise, [the more] that’s going to help your stem cells rebuild and help the process move forward.”

We went from walking 15 miles in one month to averaging 10 to 12 miles per week in April. By May, we were up to about 25 to 30 miles a week.

I can only thank my wife and all of my family for helping us. The fruits, vegetables, and everything that was going on helped me rebuild as fast as I did and regain strength not only through medicine but through nourishment. Those were instrumental aspects of my expedient recovery.

Words of advice

Do bone marrow biopsy under sedation, even if you have a very high threshold for pain. I did two with local anesthesia only and I would not recommend that to anyone. The last two were under sedation in a hospital. The recovery was so much better.

Once you’re diagnosed with blood cancer, understand that you’re not alone. There are thousands of other patients. Their experience can help you prepare for what is yet to come.

Appreciate every moment. Life is extremely precious. Even though you’ve been diagnosed with cancer, it’s not the end of your journey. We’re known for being warriors. In dealing with cancer, you have to have the fortitude and the mental capacity to see the other side.

Prioritize your health. Before the diagnosis, I was a person that had a sweet tooth. Those are no good for individuals diagnosed with cancer so you have to take it to heart.

Follow the rules. A lot of times, people say, “I don’t want to follow rules. Maybe I want to have a beer, I want to have this, or I want to have that.” The more you follow the rules, the better the outcome will be.

Don’t take anything for granted. Ensure that you live life to the fullest. They call me G 2.0. Put your attention to what makes you happy. Don’t let anybody steal your joy.

I was in the Navy and stationed overseas when I found out that my cousin had passed away from leukemia. He was a few years older than me — in his late 20s, maybe early 30s. He was on the list waiting for a donor for him to get a stem cell transplant. His body was unable to hang on.

I never knew about anyone in my family having any type of illness. As I grew up, even in the generations preceding me, we don’t talk enough about what’s going on in people’s lives. What we don’t realize is the impact and the implications of being able to share that information go a long way.

It’s really important to open up when you’re dealing with adverse situations, particularly with health or illness. There’s so much information out there. When you’re trying to find out genetics, you want to know if it’s in your family or the likelihood of it striking someone in your family.

Very early on, I wanted to share my journey, bring forth awareness, help people understand what I’ve gone through, and what they should look for. If I could do that and help one person, it would be of significant value to me.

I have thousands of people reaching out to me from all over the world. I do realize the aspect of being able to be vulnerable, to be transparent, to enrich others, and to provide that sense of empathy and compassion. Those go a long way.