All Posts by Todd

0 Why you NEED a Second Opinion!

The importance of getting a second opinion is critically huge when you are going through kind of this monumental change, or this monumental experience they call cancer. As a cancer survivor or as a new cancer patient, it’s very critical to get all the information you need in order to make good choices to start your treatment and to feel confident in your ability to feel the best that you can. It’s really easy when you don’t know anything about what you’re going through during your original diagnosis to not know you have options. 

Your so overwhelmed, you just don’t know!

You feel really alone. You go with the flow and just let time happen. Mostly because you can’t believe this is happening in the first place. Especially since it’s really hard to understand the cancer experience. You gotta let it go. It’s a tough thing to do, especially for someone that has a lot of ability and likes to have control over everything.

It takes a lot of guts to go through this and to put your faith into someone that you may not know anything about who you are and your situation. They do know a lot about cancer and a lot about other circumstances like yours. This is the time you feel all alone!

What I have learned from a Second Opinion!

When you’re originally diagnosed, you start to develop a routine. And over time, you learn to become numb to everything because you end up going to so many doctor visits, seeing specialists, multiple visits to your primary care doctor, trips to pharmacies, multiple tests and biopsies and a lot more. There’s just a lot involved with the process. 

I’m realizing and remembering a lot of feelings and emotions I went through during my original diagnosis 10 years ago. I’m feeling a lot of the same now into this next journey or this next chapter. Mostly because I ended up having to see a specialist right off the bat due to my history with Hodgkin’s. 

It opened up a floodgate of emotions and feelings. And on top of that, you feel you may not be getting the answers to those questions. 

That’s what ended up happening with my initial visit with the first specialist I saw in Denver. I didn’t feel we weren’t getting the answers we wanted. It was a three-hour consultation and although we were talking a lot about treatment, it was feeling more like this is the way and there’s no other option. 

Is this how it is? NO! It is not.

Because of that atmosphere, tone and the words used, I felt like I was just a number within the macro picture of treatment with this oncology transplant team. It was really hard to hear that. I left that consult feeling more confused and not comfortable with my situation moving forward with them. 

Once I met with my oncology team in Edwards, the one that is actually going to be administering my treatment (who is super helpful by the way), they’re very professional and very kind and caring. We asked to get a second opinion.  My oncology team absolutely encourages that. And they gave a recommendation and helped us set up an appointment with another specialist in Denver. 

Below is a great link from the American Cancer Society about Second Opinions!

https://www.cancer.org/treatment/finding-and-paying-for-treatment/choosing-your-treatment-team/seeking-a-second-opinion.html

For this second consult, My wife and I took a little bit of a different approach. We had a really early morning appointment. So we stayed the night before in Denver and got to the hospital early. We treated that evening as a date night. My wife and I went out to dinner and did some things that were a little bit different with the intention of taking our mind off the importance of this second consultation. We got a hotel and we just enjoyed our time together. By doing this, It gave us a fresh perspective leading into the next day’s affairs along with helping with anxiety and fear.

It was really good to meet this new transplant doctor because he specializes in the reoccurrence of lymphoma and Hodgkin’s in particular. There wasn’t a lot of difference between what the first specialist said and the second specialist said, but it was in how he presented it to us. And he answered all our questions!

And that’s why a Second Opinion made a big difference. 

There were some options that were brought up that were different. This helped Erika and I take all this info into consideration for what we were looking for regarding my future treatment plan. 

I’ve been spending a lot of time looking at the big picture of it all. During the first consult, What it’s going to be like after the initial six cycles of treatment and a PET scan after the third, and then the course of treatment after that. The dreaded maintenance chemo. I had a lot of fear leftover from my first initial visit with the first team. And this maintenance plan still has me scared!

So with this second consultation, we were able to get a much better grasp of the overall picture of it. And I left feeling much more confident and better with what I’m about to go through with treatment. 

The important Second Opinion

So at the end of the day, I’m glad that the second opinion happened. It gave me a lot more insight into what the overall treatments going to be for me for the next six months to the next two years. It gave me enough confidence to feel good about the next steps of what the journey is going to entail. 

That is the main reason why you want to get a second opinion. Just for the pure fact of making sure that you get all the information presented to you. And it honestly if insurance would take it, I would try to get a third, fourth and even a fifth opinion but that would require traveling out of state. That’s just not realistic and it’s logically not going to happen. 

But again, I feel I feel really good. I’m glad we got the second opinion. You always hear about how is it morally okay! Honestly, at the end of the day, it doesn’t matter what team you’re going to go with as long as you feel comfortable with the team that presented you with the best information in the most understandable way. 

That’s why it’s super critical for you to make a choice on who you’re going to get treatment from. So take the time, especially if you’re diagnosed stage two and even three. What’re another two weeks going to be in getting that second opinion to make sure that you feel like you are going down the right path for treatment. Because chemotherapy is no joke, it’s going to wreck you, it is going to do a lot of damage. 

Take the Time for a Second Opinion!

Take the time to really allow yourself to get all the information. Then don’t feel bad if you decide to go with another team at the end of the day. It’s just business and you should treat it as such. And you should treat your health as a business because you are essentially spending a lot of money with these teams to make yourself better and to get you healthy again. So by all means, take the time to choose what you feel is the right choice.

Right now I feel very, very good about having a second opinion and I’m going to go with my second option because it was such a better meeting and much more comforting. 

By taking this approach, It was more confidence building as I go into this next bit of treatment. So Yeah, that’s why you need to do a second opinion!  

0 How many stages of lymphoma are there?

How many stages of lymphoma are there? I took a lot of notes from when I was going through treatment and through the entire cancer process. From diagnosis through how my treatment was going to proceed. This helped me learn about my staging. For me, I was staged really, really advanced. That is why I wanted to learn about this. And also for me to revisit in the future. It’s been eight and a half years since I was diagnosed, well nine and a half years since I was diagnosed and eight and a half years in remission.

Time passes quickly.

At the end of the day, it’s important I am able to remember and be able to share what my experience was. So I actually go through my notes occasionally just to remember and I just compiled all the notes that I have. 

So I’m going to break this down into three different areas. One is kind of the reason for staging, the second is how the doctor’s stage. And then the third one is actually the staging itself. There are multiple different types of staging. I’m going to go through the staging that is done for lymphoma because this is what I know. Okay, this is how I was staged and this is how it unfolded for me. 

So with that said, there is a number of different ways to stage different cancers.

The staging begins…

#1

So first, the reason for staging. Now the reason for staging is really similar for all different cancers. At the end of the day, you want to be able to have a common language for all healthcare providers. What if you end up moving? As I said, if he ended up moving somewhere or moving to a different state, you can go to a different oncologist and all your records will be understood the same way by each oncologist you encounter. It’s an easier way for the medical establishment to converse and for your oncologist to talk to other oncologists about also your case.

Medical lingo is a common language for all oncologists to speak and it helps guide your treatment. So, whatever happens, where you’re staged will help determine the type of treatment that you’re going to need to have. 

#2

The second thing is that it helps estimate your prognosis. So if you are stage less advanced, you will have a better prognosis of beating cancer. Now, I’m not saying that it can’t be beaten, but your prognosis is better. So it helps estimate a lot of the prognosis issues that go along with cancer. 

#3

Third, it allows for a comparison of results over time. So if you’re able, it allows the doctors to see how you are doing over that period of time. So when you first start out in your treatment, and then over the course of three months, six months and nine months to a year, two years, five years, they’re able to see the prognosis over time.

And that’s really the main reason for all the staging and why they stage your disease. It takes a bit more time to see the end result that comes along after going through all the staging and all the treatment and really everything that happens to you. 

Next is HOW! 

So how do they stage you? This is a big question. You want to understand a little bit more about the procedures and the things that you have to go through in order to be staged. Well, first it starts off with physical examinations. The Doctors are going to take a look at you, they’re going to see what kind of things are going on. They’re going to see if you have any bumps like enlarged lymph nodes in my armpit.

Some people get them in their neck, some people get them all over their body. It just depends on where the abnormal cells will start to grow and where they start to multiply and create that tumor. So it all kind of depends on where it’s at. 

For me, it was in my armpit. I had a lymphnode that was swollen to a size bigger than a golf ball. That was the one that made me think, okay, this is how they do it. Part of the physical examination revealed this when I went into the emergency room to figure out what was wrong with me. I never even feel it. I didn’t even know. But you could see it. And that was the start for me.

Scans, tests, and surgeries 

So scans like CT scans, pet scans, bone marrow biopsies are also used to help determine how your stage, the CT scans, and pet scans will show where the lymphoma is at, where, where your cancer’s at. You’ll be able to see the scan image itself light up like a Christmas tree. If it’s all over, like mine, it lit up all over the place. I’ll add my scan too so you can see what it looks like here. So, yeah. And then a bone marrow biopsy helped determines where it has spread at that point also. Now its back to the pathology and surgery reports that come back. What it is and the biopsies that you have had in the surgeries that you have. So for me, a liver biopsy and lymph node removal were the two ways that I was diagnosed. And that’s how my team and I got confirmation about my Hodgkin’s lymphoma

After all is said and done…

You go through all these tests, you go through all the poking and probing and they’re able to stage your disease. Like I mentioned earlier it also helps all healthcare practitioners determine where you are at in your disease. So the stage one is one lymph node area, like in your neck or in your armpit. 

In my case, it was all over my body.  Stage one is like If you have one lymph node that is in the neck. It’s small. Stage two is two or more lymph node areas on the same side of the diaphragm, either all above the diaphragm are all below the diaphragm. So it all kind of depends there where it is located in the body. Stage three is multiple lymph nodes on both sides of the diaphragm.

So which stage was I in? I was definitely at least a stage three because I had multiple lymph nodes on both sides of the diaphragm. Stage four, it spread beyond the lymphatic system, like bone marrow or liver. It can go to other areas, but mostly it’ll stick to your bone marrow and your liver. 

Asymptomatic or Symptomatic?

And then on top of all of these four stages here, there are two different aspects to it. There are classifications of each stage and that’s an A, and B. A means your A asymptomatic, which means you don’t show any of the signs that go along with cancer. And B means that there are symptoms that come along with it. Things like fevers, night sweats, and loss of weight. It’s usually about 10% or more of your, your own body weight. If you lose more, it may mean that your disease is a lot more widespread and a lot more difficult to treat.

How many stages are there?

In my case, I was staged 4B. I had multiple lymph nodes up and down, all over my chest and groin. I had affected lymph nodes above and below my diaphragm. It had gotten into my bone marrow and had gotten into my liver. My liver is what set off figuring this whole thing out for me, the symptom was what felt like cramps. That’s how the staging works and that’s how it all progressed. 

If you’re able to catch it earlier, your prognosis is even better. But once you get into the later stages, the 3’s and the 4’s, that’s when it becomes more difficult. And then the next course of action and treatment can go into an autologous stem cell transplant, which is what I ended up having.

So that’s it in a nutshell and a breakdown of staging for lymphoma. There are some similarities with other cancers, at least with the discussion and the common language for doctors and oncologists to talk about. Otherwise, there’s another system that oncologists use to determine tumor sizes and everything else. And I’ll get into that in another video. But yeah, that’s it for lymphoma. 

0 How close are we to curing Cancer?

I want to have the discussion of how close are we to curing cancer and I want to bring this up because I think it’s important to really have this realization. It is a touchy subject with most of us survivors, especially because we went through it. We have beaten the odds and we have been able to say, all right, we’re here. 

So, why are we still having this fight? Why is this battle still going on? 

How close are we to curing cancer? Well, in 1971 President Nixon declared the National Cancer Act. That was essentially the start of The War On Cancer. But what really ended up happening is an insane amount of money has gone to research. I mean 100’s of billions of dollars have gone to research to try to figure out and understand how cancer works, the biology of cancer and everything in between.

There’s a lot of gray areas there!

But what is really ended up happening is some of this money might be going to research. It may be going to the understanding and figuring out new ways and new therapies to help deal with the side effects of cancer and treatment. 

But I believe it’s not dealing with the true issue of curring cancer. I believe this because there are too many situations going on in the real world that makes me really wonder how much of a cure is really wanted out there from a lot of people. Especially the ones that are in charge of the medical community. Not to mention that there is not just one type of cancer…

Now, I’m going out on a limb here because I’m going to talk about my opinion here. The more I read about this, the more I learn. It makes me frustrated, sad and angry. It is more important to make and keep people sick. There’s just way too much money in the industry.

Ok, I feel better now!

The weight feels lifted. But it’s a real serious discussion because if you look at the macro picture, our social environment, economies, then break it down further to our diets, the water that we drink, lack of exercise goes to show just how we are being and feeling set up for failure! 

You have to wonder why a cure for cancer hasn’t happened sooner. You know, let’s take municipal water treatment, for example. A huge majority of them add fluoride to your water. Fluoride is a known carcinogen. And you know, this is a poisoning that is happening on a huge broad scale by municipalities. The municipality that I live in here in Breckenridge adds fluoride to its water system. I’ve actually seen the implementation of fluoride in the water plant. This is still hard for me to wrap my head around! 

It’s confusing! I don’t understand or comprehend. Politically, I do understand. Because there’s a medical association that has really lobbied to have this added to our water systems. And it’s really frustrating to know this. In 1945, Grand Rapids, Michigan, became the first community in the world to add fluoride to tap water. Shortly after, studies showed a lower rate of cavities in schoolchildren. Since then, fluoride was more widely accepted across the country. 

Let’s take nutrition for example. From seed to mouth, there is this entire industry of genetically modified organisms. All seeds are genetically modified. The only thing that can be patented is genetically modified items or you can’t patent naturally occurring plant seeds and DNA unless you change its genetics just enough so it can be patented. So how close are we to curing cancer?

There’s a huge issue there… 

Did You know Monsanto is the biggest seed bank in the entire world and everything they have has been genetically modified? Everything that you plant and every crop that is farmed has been genetically modified. It’s really hard to find non-genetically modified organisms also. To plant as farmers for consumers to get. But not impossible…

I can understand the theory

But I do get why genetically modified plants exist and some theories behind it. 

The big one is to deal with drought and to help get greater yields out of the crops. That makes sense with the world’s increasing population. 

But, there are some dubious things that I feel have come to light. Greed and control. Its big industry and there are a lot of lawsuits that have and are going on setting president. Those are two good examples of what’s going on just in that I see in reading and observing. 

The other thing we can do is look at all the fast food that we get. We get such nutritionally void food from all the fast foods that are presented to us that we can choose from. Even in our grocery stores, there’s a lot of “food” that is not good. Think about all the prepackaged, frozen food.  Even a lot of the “fresh” produce is void of nutritional value too, but that’s the best that we get.

Our health can only be as good as the choices we have!

You know, this makes our nutritional choices really hard, especially for where I live. I live in the mountains, in the middle of Colorado. And trying to get good, fresh produce is really, really difficult. But nonetheless, these are all these signs. 

I don’t want to call it a conspiracy. But there’s a lot of history that you can follow that is very well documented. Its big business! I have no proof, but I feel the grocery and medical business are very much intertwined. 

Medically Speaking

How close are we to curing cancer? I believe that it’s more important to keep people sick and to trust the current medical industry as a whole in order to have all your treatments done by western medicine.  And the impression is there’s no way around it. The Truth About Cancer has a great documentary about the history of the medical industry and how it’s grown to this point.

This is all research that you can do yourself. And I’ve actually done a lot by informing myself of the documentaries that they have published. It is amazing to see just how much monopolizing the medical industry has done. And so frustrating knowing this. I wish I knew a lot of this stuff beforehand because there are alternatives out there that you may not be aware of. Treatments that you cant get here in the states because it is so controlled and regulated. 

So there are a lot of other ways to be able to face this cancer stuff. But I think the biggest one, and it sits right under our noses, is being preventative in our approach to not getting cancer. And that really goes to our entire lifestyle of not getting a disease. Now, It’s not a hundred percent foolproof that it’ll work because unfortunately, we have a lot of cards stacked against us.

Choices Matter

How close are we to curing cancer? If we are aware of the choices we make and what we are putting into our bodies, it can really make a massive difference to our longevity. Can you live without having to go through cancer prevention? 

For me, after going through lymphoma, and after going through all the treatments and the stem cell transplant, then having time to really take it all in and see and feel what I just went through was incredibly life-changing. It made a lot of sense for me to change every single aspect of my life. And that’s not just including physical activity or my work habits, but my entire lifestyle. 

Even alcohol consumption. As I think about it, really any sort of consumption period! It doesn’t matter. I’ve never been a drug user, so that’s never really been a big one.

I did smoke a lot of marijuana through my treatment tho. Mostly because it really helped with nausea and helped me eat. This was a huge thing for me. But I don’t take any meds now. Except for the occasional Aleve (naproxen sodium) if I’m really sore for some reason, but I don’t really take any sort of meds or drugs. I don’t really drink a lot either but I do enjoy occasional beer here and there, but I don’t go that route anymore. 

Exercise is a lifestyle!

I try to get as much exercise as I can and keep my stress levels as low as I can. I’m not perfect because I don’t have a perfect world to live in. So I’m doing the best that I can with the time that I have and the circumstances that surround me.

That’s what I’m really working on every single day in my life. I had been spending a little bit of time getting back into some counseling. Mostly to help me with some communication skills. It’s really important that I work on my head and the psychology of the things that bother me. My relationships in my life are incredibly important and I want to make sure that I can make those better. 

It’s taken a long time to get to this point and being aware of all situations. But I’m not done! I know that I need help. There are times that I am just going to muck through the chaos and do the best that I can. To make sure that those choices are the best that I have in front of me because of going through cancer.

The Unfortunate Reality

I have a higher rate of having a second cancer in my life at some time because of the amount of chemotherapy and just the pure amount of poison that I put through my body and I am learning more and more about alternatives for me to go through as a survivor now because I kind of need to prepare for myself for what is a very possible inevitability for myself to go through. 

I’m just thinking about these things and thinking about the future. I’m making choices that are the best for myself and I’m doing the best that I can health-wise for me also. It’s becoming more prevalent in my family’s life because if they see me in a leadership role with them, I can influence them into doing the best they can to follow suit.

It’s not easy for them, but they see that it’s really important to me. I believe at this point that a cure for cancer isn’t going to happen. There are too many cards stacked against us. And there are too many variables with cancer and the medical and food industry. 

How close are we to curing cancer? There are also too many people not willing to the lifestyle changes that need to happen. And as everyone stays in big cities, it’s just gonna continue to happen. But for myself and people that I know, we do the best that we can to inform everyone else out there. 

Thanks for reading!

Todd

***Update***

The summer of 2019 turned out to g=be a challenging time.  I Was rediagnosed with Hodgkins Lymphoma. It was caught early by paying attention to my body during high activity stress (mountain biking). I ultimately was having a breathing issue and couldn’t get the deep breath that I needed to supply my muscles with the needed oxygen. Check out my story more in-depth here. 

0 What is a cancer doctor called?

We’re going to start off with a little cancer 101. For those of you that are new to cancer, we are going to talk about what a cancer doctor is called. This post is geared towards those that are new to cancer or just perhaps just curious. 

I wanted to change up what I normally talk about for helping survivors. But I think helping new patients and people that are new to the cancer experience is really important also, 

So what do you call a cancer doctor?

Well, a cancer doctor is called an Oncologist and they practice Oncology which is the study of cancer. This is really a simple explanation. I’m going to go over six different types of oncologists that deal with the different sides of oncology. By the end of this post, you’ll have a better, clearer picture of what they do and why. 

A Medical Oncologist and Surgical Oncologist

OK,  a medical oncologist treats cancer using chemotherapy, targeted therapy, immunotherapy, and other medications. Also, they are the ones that prescribe the first bit of your treatment. They also work hand in hand with the second oncologist, a surgical oncologist. 

Now surgical oncologists use surgery to remove tumors and they help with performing biopsies. They are critical in helping diagnose and stage your cancer and figure out what kind of treatments you’re going to be needing as you move forward.

A Radiation Oncologist

Now the third one is a radiation oncologist and now a radiation oncologist treats cancer using radiation therapy. So if you have to have a tumor that needs radiation to be part of treatment, then you will see a radiation oncologist also. Now, these three can work hand in hand together with the type of therapy and treatment that you need moving forward. They work a lot more hand in hand than the rest of them. I call them the Big Three.

The next three are also really important and they all can work together depending on what kind of cancer you have of. 

A Gynecologic Oncologist

The fourth one is Gynecologic Oncologist. Now they treat gynecologic cancers like uterine, ovarian and cervical. It’s more of a female oncologist that helps with the feminine and reproductive areas of a woman’s body.

A Pediatric Oncologist

The fifth one is a pediatric oncologist. Now, pediatric oncologists deal with children and child cancers. They will also deal with adult cancer patients if the cancer is very similar to what certain children deal with. So it all kind of depends. But mostly pediatric oncologists deal with kids. A touchy subject because none of us ever want to see a child go through cancer. Cause for those of us that have been through it and are survivors, and that’s a really tough pill to swallow. 

A Hematologist-Oncologist (Blood)

The sixth one is a Hematologist-Oncologist. Now they deal with diagnosis and treatments for blood cancers like leukemia, lymphoma, and Myeloma. And they are just specialty oncologists for those fields in itself. Some medical oncologists also study Hematology(Blood) to broaden their education.

These are the six different types of oncologists. And they mostly do everything in the cancer world. This is how it is broken down from my understanding and experience from talking to different oncology departments. 

In my case, I have a hematologist. I also dealt with a medical oncologist and a surgical oncologist through my lymphoma. Having had lymph-nodes removed, multiple biopsies and different ports placed also, you can see why you may deal with multiple oncology professionals throughout your experience. Their job is to really explain the diagnosis and staging of your cancer. 

So, what do they do?

They’re going to help give you a better understanding of what it is that you might be up against. 

They should also review all the different treatment options for you. Because there is more than one for each type of cancer you’re dealing with. There are a lot of different treatment options. And oncology is based on Western medicine treatment options.

Don’t forget the alternatives…

And then there are treatments and options that aren’t suggested. Some are through eastern medicine. And some are based on people’s personal experience. As a new patient or potential patient, you should, by all means, Start informing yourself about everything that is out there. Here is one example… Hoxsey Bio-Medical Center in Tijuana Mexico. Hoxsey is my alternative to long term chemotherapy.

Please remember, Oncology’s job is to help deal with symptoms and side effects management. If you’re dealing with a lot of pain or dealing with one of may side effects, they should be able to help you deal with those side effects that come along with chemotherapy and radiation. Even the surgical side of cancer. 

So those are the six different types of oncologists and what their job is to do. 

0 Questions with No Answers

This is something that is always on my mind, especially since I am always curious and trying to figure out why I asked myself questions where I know there will be no answers. This topic really comes down to just asking simple questions for whatever reason, whether it’s curiosity or whether it is my ego, trying to make sense of the surrounding things that go on. Maybe I can explain, but for whatever reason, I asked it as a question that I know I’ll never get an answer to.

I think it kind of stems from when I was diagnosed because when I went through the whole treatment process, I couldn’t help but ask myself why was I going through this?

How did I go through this and what were the circumstances that led me to this?

And I can think of a number of reasons why I may have gotten to the point of being diagnosed with stage 4 cancer. But at the end of the day, it all comes back down to the face I will never get an answer to this. But for whatever reason, it has overflowed into other parts of my life.

Bad EGO

I ask myself a lot of really dumb questions about things I’ll never get an answer to. Things like why people make decisions that boggle your mind. I think it really just comes down to my ego trying to make sense of other people’s situations that are confusing and are curious to me.

For example, recently a guy had mowed down his entire yard, a couple of acres worth of these willow trees. My curiosity is like, why the heck did he do that? It makes no sense to me.

I catch myself all the time asking these random questions. And this has been driving me crazy. I’ve consciously been working a mental process of realization and acknowledging when I ask these ridiculous questions I know I’ll never get an answer to. I’m becoming more aware and it has gotten easier over time. By making conscious decision and choices of knowing when I do this, it has helped me learn not to be so hard on myself.

I still ask questions I know I’ll never get an answer to, but as a cancer survivor, you just can’t help it.

As a patient and survivor…

You are constantly trying to figure out why you’re going through this whole experience. That’s the root of why it is been really important for me to make the awareness within myself. Because the more I realize I do it, the better I get at not asking these questions. When you leave a question open-ended, it can lead to some pretty painful emotions and situations and lead to fear and anger.

I don’t need that in my life!

So, becoming aware of these questions has been huge in my mindset and most likely just a psychological thing that I’m teaching myself to not continue doing. So far it’s been helping.

I get a lot more relaxed and allow myself to just feel okay in the moment and feel okay with the situation and surroundings that are going on in my life. I want to ask a bad question, but I’m getting better at not.

Is it difficult?

Sure. There are times where it’s really difficult. There are just some things that are out of my control and trying to do the best that I can. Hopefully, you understand that there is a bigger picture outside other than just cancer. Cancer is always going to be a huge part of us and it’s always going to be a huge part of who we are moving forward.

But being able to not allow it to dictate the rest of our lives going forward.

I choose to be a survivor!

One with a lot of positivity and I do my best to bring that into the videos. So I think that helps explain where I’m at with this kind of a strange topic.

But nonetheless, I believe that once you start realizing that these questions will not ever go away, but you start reframing them into having answers or being able to find answers for them really makes a big difference.

Don’t let the curiosity get to you and don’t let your ego start toying with your emotions. It’s super easy to do and you start running into a whole lot of tangents by asking questions with no answers.

Do you ask questions you’ll never get an answer to?

0 What is Stage 4 Cancer?

I think there are a couple of key points that you really need to know in order to get a better understanding of what it means to be diagnosed as a stage 4 cancer patient. So the first thing that you really need to know is that stage four cancer has spread from its origin into other parts of the body.

What that means is that cancer has metastasized, is the term that doctors and oncologists use to describe what has happened. So cancer has spread or it has moved from the point of origin. Now in my case as a stage 4 cancer survivor, my lymphoma started in a lymph node just above my heart. Over time it separated and grew, then worked its way through the lymphatic system in my body. It ended up making its way into different lymph nodes. I had all sorts of lymph nodes in my chest and my armpit, down in my groin and it eventually metastasized into an organ, my liver.

That’s when it really became serious.

I’ve been told Stage 4 means two things. One, it metastasizes so it can break apart and then get into your bloodstream or into your lymphatic system and it can spread into other parts of your body. And two, that it must be above and below your diaphragm. And so once it really spreads like this is when it really becomes a very serious issue.

So there are two groupings that I know of as a stage 4 cancer patient. There’s actually three, but there are two that I learned as I was going through cancer. There’s grouping A and grouping B. grouping a means you are asymptomatic. Meaning you don’t show any symptoms. I was staged in grouping B, which means that it was a more serious type showing symptoms. The third one is stage c, which means that you go into clinical trials. So there’s, there are multiple groupings that go on with stage 4 and that help define the differences into what your cancer might be doing and where you are currently at.

My Staging

For me, I got to be at stage 4 B reoccurring, which means I had a reoccurrence. This automatically put me into the next realm of treatment, which was an autologous stem cell transplant. This led to the rest of the treatment I experienced. And which has actually put me in remission. At this point, I have been in remission for eight and a half years with that classification. There’s one system that kind of explains how this the staging works and it’s called the TNM system and the American Joint Committee on Cancer and the International Union for Cancer Control maintains the classification system. It is updated every six to eight years. With the advancements of treatments and how people are approaching cancer, I believe it could be updated a little bit more frequently.

This is the norm

But as of 2019, that’s how staging works. This is the international normal for how cancers are staged with each individual person. So with that said, I hope this kind of gives you a little bit of an insight into how cancers are staged and also what stage 4 really means. So you know, just as a quick recap, you know, your cancer has spread from its origin. It’s gone above and below your diaphragm and it has metastasized or spread into different organs in your body. And that’s it.

That’s really the simple jist of what stage 4 cancer is.

0 How does cancer spread?

This is a bit of a complicated issue to understanding from a layman’s point of view. From a survivor standpoint, you get a little bit more information as you go through the process. But I wanted to share the simple way of why and how cancer spreads. By doing this will help give you some insight into how the disease progresses as cancer grows.

I went through lymphoma, so my experience is a little bit different. Normally cancer will start as a tumor and it will slowly grow and get bigger. Then at some point, if not found or treated, it will break off and make its way into the bloodstream.

At this point, it will kind of go to wherever it wants to go.

This is where Cancer starts to spread. The name for this is metastasizing or metastasis. From there it can go anywhere in your body. You can say you have lung cancer, it might get into your blood and make its way to your liver, or even your kidneys. It can even make its way to your pancreas, it can go anywhere there’s blood. Or even pancreatic cancer can metastasize and make its way to the lungs.

Cancer is not Prejudiced.

Once that happens is when it becomes much more difficult. As it metastasizes, different drugs react different ways to different parts of your body in different organs.  It could also get into your lymphatic system and move around your body that way too, but ultimately what happens is it multiplies and spreads by making its way into the bloodstream and it travels throughout your body. That is really the simplest explanation of how it spreads.

With lymphoma, it gets a little bit more challenging because lymphomas start off in your white blood cells. There are five different types of white blood cells that are created in your body. Neutrophils, lymphocytes, monocytes, eosinophils, and basophils but there’s only one that I’m going to talk about, and it is your lymphocytes.

I had damaged lymphocyte that created my Hodgkin’s Lymphoma. My team couldn’t kill it with the normal rounds of chemotherapy that were prescribed to me. I went through 12 rounds of chemo called ABVD to try to kill it. That didn’t quite work and ended up having a reoccurrence. That’s when the decision was made to have an autologous stem cell transplant.

A Faulty Lymphocyte

So what happened for me is I had a lymph node just above my heart that ended up creating the entire mess. The lymphoma ended up moving throughout my entire lymphatic system. I had a lymph node removed out of my armpit and I had biopsies done through a mediastinoscopy of the lymph node that was above my heart. My pet scan showed it was all over my body and it had spread to my liver.

Fortunately, your liver is one of the fastest regenerating organs in your body. Nonetheless, it did go there and I was at risk of having liver damage because of the chemotherapy. So far so good, but as it progressed, it’s spread through my lymphatic system. And over time, it just got worse and worse and it grew all over.

And so that’s why I ended up getting stage so advanced. Staged 4B reoccurring Hodgkin’s Lymphoma. And that’s how that whole thing spread. And that’s actually how cancer spreads. Once it gets into your bloodstream, the game changes.

How Cancer Spread

Your circulatory system and lymphatic system are essentially highways of transportation for everything that goes on in your body. Even cancer. So that’s how cancer spreads.

If you have any questions, hit me in the comment section below. I’m sure that there’s a couple of weird ones that you are thinking about. But at the end of the day, that is really the basics of how it goes on.

Yes, there’s a lot more that I don’t understand. I believe what’s most important is you understand the basics of how this disease spreads.  Now you can have a bit of an educated discussion with your oncologist and your doctor and choose the next steps in your treatment.

0 What does cancer feel like?

The reason why I feel this is a subjective topic for me because it’s really hard to express exactly what cancer feels like and explain it to someone that may not understand.

I’m going to start by telling part of my story. The hindsight part of what I remember 10 or 11 months before I was diagnosed. Leading up to my diagnosis date. Then I’m going to break it down into two different aspects.

First, for someone that might be a new patient trying to get a little bit of information and maybe this discussion is something that might help someone understand information on what might be going on with them.

And second, from a concerned person or caregiver standpoint, giving a little bit more insight and help wrap their head around what it is that their friend or their family member might be going through.

About 11 months before I was diagnosed

I came back from vacation in Florida and I went up to a little ski resort called Jackson Hole in Wyoming. The trip plan was to go snowboarding with a friend of mine. And we drove up and checked in at a local motel. We walked into town and went to the Million Dollar Cowboy Bar. If you’ve been up there, you know what that is. It’s just a big o’l country western bar that is a staple of Jackson, Wyoming. And we proceed to have a beer and a shot of whiskey.

And I remember receiving the beer, taking a sip and thinking, this is really, really not good. This beer just didn’t taste right. I was confused because this did not really make any sense to me. Thinking to myself, this is really horrible. The king of beers is known for their born on date and their freshness of the beer and how it’s brewed. So I looked at it, the date was all good and I asked my buddy Neil, does your beer taste okay to you? And he’s like, yeah, let’s tastes fine to me. So I asked the bartender for another one. I ended up trying that one and it too just did not taste good.

That’s what I remember…

Feeling the change of what was happening in my body. But not knowing anything at the time.

That’s when I noticed things starting tasting differently. Everything became a lot blander. Nothing really was tasting good to me. At this point, I was aware of something but thought it was really weird and I didn’t have a clue on why it started. This continued through the summer and up to my diagnosis time. I lost a lot of weight but attributed it to the physical activity that I was doing. My work consisted of a lot of tree and logging because, at the time, the pine beetle was really causing a lot of destruction around the Summit County area. During 2009 it was a really hard time with the economy during the recession. And we were doing anything and everything we could to make a living at that point.

I was working really hard

And was incredibly busy, but I was losing weight. For the most part, feeling pretty good because I was kind of overweight, to begin with. Enough to realize that my knees weren’t hurting. I feel like if I kept going down that road and I didn’t go through cancer, there could have been some onset diabetes happening.

So in some sense, everything that was happening was good because I was losing weight. During this time, I was having these night sweats that were immense. I mean I was soaking my bed. It was tough to believe. Having to wash the sheets every day. I remember laying on the couch, just and feeling my heart rate start to skyrocket.

It would go up to one hundred and thirty just by laying there. I was becoming more concerned.

At this point, I knew something was going on. Fortunately, I had insurance. I went in for blood work sometime in July. It came back all pretty normal except for my white blood cell counts were high. I had no clue what that meant. But we decided to do another set of blood tests. I wasn’t in any hurry or anything like that. About a month later, the results came back. They showed an even higher increase in my white blood cell count. This is starting to peek the interest with my primary care doctor and the group of Physicians working here in Summit County. We decided to do one more blood tests. I got the results back the day that I went to the emergency room. This is when I started down the path to being diagnosed with Hodgkin’s.

And that’s what lead up to me going into the hospital.

During the time between all the tests, I was becoming really itchy. There was a point where I was at my fiance’s house and I just could not stop itching my legs and arms. I mean it was intense. Like it was really, really Itchy. It felt so good to scratch and I didn’t want to stop because it was that itchy. I have some scars on both sides of my elbows from where I just would itch until it bleeds. It scarred up over time because it just wouldn’t stop. Between the itching, the blood cell counts, food tasting bad, the weight loss. That was really the start of me getting to that point of figuring out what was going on with me.

I wasn’t feeling 100% healthy. And that’s what led me down the path. These were the original symptoms that I was dealing with as a pre-diagnosed cancer patient.

Once I was diagnosed is when all the relief came. Finally figured out what was going on. Understanding why things weren’t tasting good. Understanding the night sweats, itching and everything else. I didn’t feel horrible like I was dealing with the flu. I just wasn’t feeling good, an overall not feeling good. It was low grade. Being constantly tired, but just kind of making life happen.

As I look back…

I think my Hodgkin’s was attributed to stress and some poor lifestyle choices.

I want to share the perspective of a cancer patient or a possible new cancer patient. What I want you to know is it’s important to start paying attention to some of the signs. Are you are feeling tired? Are you are itching, and having really bad night sweats? Is the food your eating tasting alright right? Do you have hard bumps in your neck or your armpit? Even possibly in your groin.

These are signs that you might be having an immune system issue, which is possibly leading to lymphoma.

Keep an eye on these symptoms. If you’re not feeling good, if things aren’t, aren’t tasting right… My first signs were the taste of food and drinks. Feeling like they were not tasting as they should.

Looking back, that’s what helped me figure out what was going on.

For a caregiver or a concerned family member…

Here are a few signs that this is something you can do to help your friend. You can start by asking questions like if food and drink are tasting different.

Here’s a couple more questions you can ask…

• Have you been feeling tired and lethargic?
• Are you having a hard time concentrating?
• Are you having night sweats?
• Do you feel itchy?

These are some of the symptoms you’re asking about because as a concerned person, that’s what you do.

These are ways that you can understand what cancer can feel like, not only for yourself but for a person and a possible patient also. Please keep in mind that this is generalized and this is based on my own experience.

I want you to understand

This is what cancer can feel like. It’s just a lot of small health things that might be nagging in the back of your head and you might be feeling at the time. And just curious why these things are happening. If the symptoms are happening slowly or are getting a little bit worse each day and each week, each month, then it all starts to make sense to take it to the next level.

You begin this by figuring out why these things are happening. That’s when you start really getting involved with your doctor. The doctor will hopefully help guide you into the next steps that need to be taken. That could be blood work, a CT scan, and even some biopsies to help figure out what is going on.

0 Is Life harder as a Survivor or as a Patient?

Is Life harder as a survivor or as a patient? Now I see these in chat rooms and survivor support groups as a question. How do you differentiate the two? It’s really pretty hard because you go through a couple of different stages as a patient when you get diagnosed. And then another once you go through the experience of treatment and able to come out the other side. Now you have a slew of new issues to deal with as a survivor.

And that’s why it’s hard to justify the two.

I think straight off the bat, I believe it’s a little bit harder as a survivor. Life is harder because life is just hard.

Even before going through cancer and even before my diagnosis when I was healthy, life was just hard. I didn’t have a lot of knowledge into the depths of my own being and dealing with my id, ego, and super Ego from a psychology standpoint. It was really a difficult process to know and learn.

Basically, I had no clue.

At this point, I wasn’t really in a position to know anything about myself or really care about doing any sort of self-help or conscious growth. When you’re diagnosed, you go into this fear category simply because you’re dealing with the stigma of cancer and also dealing with all the unknowns that come along with it. For most people, the stigma of cancer doesn’t necessarily mean a death sentence. But when you hear the word cancer, you think of death.

You end up thinking the worst case scenario and thinking of your mortality. And that’s where it can be really hard to get over. Fortunately, these days with the technologies that we have, things are getting better from a survivorship standpoint being able to survive cancer. It’s not always going to be rainbows and candy. But for those of us that do make it as a survivor, we have to deal with life as a survivor.

Now as a patient, when you’re going through treatment, you get waited on hand and foot. You are constantly being helped by a caregiver, by all the nurses and doctors. So you have this barrage of extra help going on. But here’s a lot of people that don’t have that because of insurance issues and other outside forces that make it really difficult for them to have that.

Is Life harder as a survivor or as a patient? Some may not have support. There may not be a support group to even to deal with helping a patient get through the cancer diagnosis. So that is an unfortunate side effect of our current health system right now. Let’s just hope and pray that some things will start changing. As a patient, we are catered on hand and foot. We have comfy chairs to relax during the infusions. Sure, We have to go through surgeries, we have to go through a lot of different testing and we do feel like that test animal. But we all really deal with fear. The fear of not knowing. And this goes both ways for a survivor and as a patient. We don’t know because we’ve never been through the experience.

And as we go through the experience, we get a little bit more comfortable with it. and understanding. For the most part, as long as we are dealing with the treatment in a good way, then there’s the reality of the survivorship side of cancer. Once you are in the clear, so to say, you either live in remission or the oncologists deem that you are cancer free. I don’t like using the word cured. But even so, now you are dealing with the entire gamut of feelings and emotions that come along with Survivorship. It looks like I’m able to live another decent amount of time, and not have to deal with my mortality right now.

And that’s where it gets really tough because you have the first realization of, wow, I’m alive.

This is awesome! And then things start to sink in. You begin to learn more about what it means to be a survivor. Learning the statistics of cancer Reoccurrence. Trying to just understand this whole entire process. This entire experience that you went through and it’s really difficult to grasp and wrap your head around. It takes time and it’s really important to start working on the mental health side by seeing specialists and counselors and start working through this experience.

It doesn’t happen overnight!

This is something that I’m still working on. Eight and a half years into it as a survivor. It’s a constant process, and I think professional help is something that’s really, really key! This is a huge need and helps get you through the fear and makes survivorship a lot easier.

Is Life harder as a survivor or as a patient? Survivorship means figuring out what your life’s meaning is and the responsibility that comes along with it. Just because we now survivors, doesn’t mean that we can or should become complacent and stop trying to be the best that we can. It’s almost a moral issue when it comes to not doing better for yourself. And not trying to help people that have been through a similar experience. What you have learned with cancer is incredibly valuable to people that have and are going through it right now. And for you to share your story and to talk about it really makes it easier for those people that are struggling right now. To have someone that they can relate to. I know for a fact that I had a really hard time with this because there was no one for me to talk to.

There were no support groups in the area where I was living. There was a small group of people that could really help and most of them lived in Denver. So it was really hard for me to really figure this out and I had to figure this out on my own. And so now that we have support groups on Facebook and there are questions being asked on Reddit and Cora. We have an opportunity to share our story and because this is where people are going because the medical industry has not been able to help us survivors deal with this problem that is going on. There should be a fourth stage to the cancer stages as it’s kind of deemed. The first three are the initiation, promotion, and progression. The fourth should be survivorship!

There needs to be a fourth element about cancer survivorship and helping people deal with the aftermath of cancer. That’s what drives me so nuts about this, and that’s why I’ve taken upon myself to really do some work in trying to help other people out there. I’ve been spending time in support groups and threads to share my experience and let people know that they are not alone. The experience they’re going through is normal. There are ways to start helping and bettering yourself through others experience and to really grow as a survivor. That’s why I brought up life’s meaning and responsibility because I believe they go hand in hand with each other. As you grow and figure out what your life’s meaning is, you start asking the tough questions like what is your “Why”.

But you have to learn this.

I mean, why do you get up in the morning? Why do you want to do something that might better yourself? And maybe other people and survivors? These are questions you need to ask yourself. And as you do that, you start becoming more and more open to the reality of helping other people. You go through all the different stages of psychology. Building, I believe is the best way to put it. And as you build, you become more confident! You become more aware! Your responsibility grows because of helping other people. And it makes you feel good deep in your heart. And that’s why it’s really important. Once you take on responsibility, then the entire meaning begins to make sense to you.

This isn’t something that you just are given. By learning this, you are learning positive skills that will help you through the rest of your life. That right there is why it is harder to live as a survivor then as a patient, as a patient, you’re given everything. As a survivor, you have to learn everything. And as you learn, you start figuring yourself out. It all starts to make sense.

I believe that’s the best way to put it. If you have any questions, hit me in the comment section below. I’m constantly tweaking on my theories and working on better ways to explain this because I feel it’s really important.

0 Cancer Ghost Pain’s

Cancer Ghost Pain’s are something that I really had to figure out what was going on after all my treatment as a new survivor. I became hyper-aware with the understanding of what was happening in my body during that time while I was undergoing all my chemotherapy. Because of this, you learn a lot about yourself. You learn a lot about how your body works and all the different things that you feel as you are going through it. Hyper-awareness really is the best word for it because you are feeling a lot of different things. Feeling a lot of emotions, feeling a lot of physical feelings that are going on with your body. You end up becoming really concerned when you start feeling things that aren’t normal.

When I would end up having little pains going on my in my right side where my liver was was, this feeling made me concerned. And I also had weird neck pains and soreness. These were the feelings that I couldn’t explain.

I asked my oncologist and my PCP about ghost or phantom pains, but they weren’t really sure what it could be because my checkups kept showing a good bill of health. Evan all my blood work looked good. So for all these things that were going on, all these pains that I was feeling, it was very possible that I was manifesting these feelings in my subconscious. And that’s why I call them ghost pains because at the end of the day they may not have been real.

At least It wasn’t debilitating for me. But it was enough to continue bringing concern into my head. Like, am I having another Reoccurrence? Are we going down this path again? And that was really a tough one to work through mentally. Because you’re never able to get over that and next hurdle because you’re basically on guard. It makes you think, okay, is it coming back? What’s going on here?

There was a point where I needed to have some sort of a definition to this issue. That’s when I came up with Ghost Pains, and I’m sure a lot of you can relate. Maybe you’ve even thought of it yourself. And that was the best way for me to wrap my head around why I was feeling these weird and sometimes intense pains that were going on in my, in my chest, legs, arms and in my feet, for whatever reason.

And by giving this some sort of a definition, I was able to start differentiating the kind of pains that I was feeling. Being able to assess how these pains were happening. Where they were, why and when they were happening.

So by doing this,

I was able to figure out how this was going to affect the next steps. I was able to use these pains as a way to figure out if they were really legitimate or if they were not. A huge majority, 90-95% of the time, what I was feeling was not anything that was important to address immediately. Most of the time these pains would come and go. most of the time they would be in certain spots that were in areas where I had surgeries and biopsies done. A lot of different spots.

Occasionally I get some weird weird ghost pains that happen where my biopsy happened in my liver. I would get some pains in my armpit where I had a lymph node removed. Even in my neck area where I had a mediastinoscopy, I get some weird sensations and things that happen there. Even then, even where I had my bone marrow biopsy in my hip, I get some weird sensations.

Not all pain is Ghost Pain

I will admit, some of these pains might be chalked up to some old sports injuries that I had. My feelings are they we’re really induced from the chemotherapy and the treatment that I was going through at the time. And by knowing this, I’ve really become a lot more at ease and a lot more peace with all the pains and feelings that I go through. Especially since I’m still very active.

I’m still very aware of all the things that are going on. I’m understanding how my heart works and how that relates to sports activities. Even got a GPS heart monitor watch so I can really keep an eye on when I’m super active. This has helped keep an eye on my ghost pains when I’m really active also.

So these are some things that I’ve been able to do. I’ve just taken a lot more interest in what my body’s telling me and how I’m feeling because of these Ghost Pains. This was huge for me to really wrap my head around and feel comfortable with it now. It took a lot of time and it took a lot of energy to really work my way through all this info. And then come up with something that made sense to me.

So I suggest for you guys out there that are reading this, if you’re feeling some weird Ghost Pains, maybe you’re feeling some true serious pains, take a moment and assess what is going on. If it’s something that comes in for a little bit, seems a little intense and just kind of goes away, It might be ghost pain or might be a real pain, just pay attention. Does it happen more often than not? Does it come and go on weird random spots?

Hard to say. But I can say that just pay attention to them. Sometimes these pains are very legitimate and need to be addressed and sometimes they don’t. I’ve learned with my body which pains that I experience are not to be of concern. This has taken a while.

I’m eight and a half years in remission now and has taken that long know how this has affected my body. So far so good, but I still get them. I still feel certain pains and I’m able to distinguish what ones I think are ghost pain and which ones are not. So take that time to really learn your body. I mean it didn’t take me eight and a half years to learn this, but it took me a few years to really start to decipher all the information that my body was telling me, and start learning what was happening.

For more information and start gaining more insight into the steps to take as a survivor, check out IA Survivorship Care Plan here!

Maybe ghost pains is a great way to explain how you’re feeling these crazy sensations that are going through your body as a survivor.