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.
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.
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?
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.
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.
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.
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.
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.
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.
Very little about Cancer Survivorship has been discussed with the growing need for guidance not only for lymphoma survivors but cancer survivors in general. This has been tough as a survivor because all the resources and information that’s online is fragmented and scattered throughout the internet. This makes the information pretty hard to find and digest.
There is also very little information in regards to re-entering life after all the treatments, surgeries and attention that is placed on beating the disease.
We survivors don’t need anything else to be harder in our lives! We have plenty of challenges ahead of us!
All the Doctor visits, treatment regimens, financial aid, health insurance maze, to PTSD, Anxiety, Chemo Brain and a whole host of other mental health issues create a frustrating and confusing experience after treatment ends.
And there just wasn’t any thing compiled on the web for a lymphoma survivor to relate to.
Right now you might be asking, What makes me the expert by doing this?
Well, a quick story for you.
On November 10th, 2009, I was diagnosed with Stage 4 Hodgkins Lymphoma. After 12 Rounds of the chemotherapy regimen ABVD, a re-occurrence happened. With my Oncologist, It was decided that an “Autologous Stem-Cell Transplant” was the next course of action.
I was introduced to my transplant doctor (who happened to grow up in the same area I did but is much older), who put me through an amazing amount of tests to see if I physically could complete the transplant. Which I passed with flying colors.
During this time, I underwent two more rounds of the Chemotherapy Treatment, ICE to get my body back into remission and prepped for the final round of Chemotherapy and Transplant.
On September 19th, I started my final Chemotherapy treatment BEAM. A six-day infusion. And on September 27th, the transplant happened. Day +1 of my New Normal began.
My expertise comes from surviving a stage 4B Re-occurring Lymphoma experience! And my desireto learn and share my experience with others.
I wanted to get the most important personal Survivorship Care information that I could find on the internet and boil it down into one place that any survivor from any cancer can use to build a complete and comprehensive Care Plan for themselves. And if I couldn’t find the information that I felt needs to be talked about, I was going to create it!
And that what the intent of Internal Architect is all about. To give as much value to lymphoma survivors as possible!
The Institute of Medicine (IOM) clearly states in their “From Cancer Patient to Cancer Survivor: Lost in Translation” Report Recommendation that there is a NEED to establish Cancer Survivorship as a phase of cancer care (Recommendation #1), and Recommendation #10 even states that “New research Initiatives focused on cancer patient follow-up are urgently needed to guide effective survivorship care”.
All this tells me is that the medical community has failed in creating an environment to help Cancer Survivors thrive after treatment. This book was written in 2005 and still to this day there is very little that has been done to help cancer survivors get back on their feet.
I clearly understand that I am jumping ship from the standardized medical norms, and creating a Personal Survivorship Care Guide or plan for any Lymphoma survivor to follow.
*”The goal of this blog is to break down 7 phases of Survivorship Care into a guideline plan and steps you should take. This is a Proactiveway to prepare yourself for the New Normal. By Survivors, For Survivors”*
My goal with this post is to start the process of giving value to survivors in a number of areas. First is to inform and make aware of what the future holds for medical futurities. I wanted to start this with information on what the long term side effects are physically and mentally. The “need to know” is to help you understand that these are a list of potential issues you may experience in the future. Nothing is guaranteed. But the statistics and research show there is an increased risk. My hope is you never have to experience any side effects ever.
I know this is not a complete care plan, but I do know that this is the best start to be found on the internet. And best of all it’s free. I ask if you feel like there is anything missing(as I know that there is), please let me know and I’ll add it.
This is the Internal Architects Lymphoma Survivorship Care Plan!
Long Term Effects: What you NEED to know
I’m hoping at this point you know that there is a risk increase in other “on-coming” diseases later on in life.
Hodgkin’s Lymphoma patients have a four to six-fold increase in the likes of Congestive Heart Disease and Heart Failure.
Depending on whether you had radiation included in your treatment, there is an increased risk for a host of other medical complications, including but not limited to, lung disease, infertility, secondary blood cancers, thyroid cancer, and breast cancer.
It’s pretty obvious that the increased risk is the first sign that lifestyle changes NEED to be addressed. There is nothing easy about treatment and there’s nothing easy about being proactive in the changes that will be made to your lifestyle.
Planning for future health issues
How do you plan for something that hasn’t happened yet? I mean, you just beat the second largest cause of death in the United States with approximately 600,000 deaths every year. You beat Cancer!
With the ever-increasing risks that we experience in today’s modern world. The odds are stacked against us. The Obesity epidemic is at its highest ever, Social Media is almost as addictive as sugar, food nutritionally has declined and convenience is the name of the game. This is just the tip of the Iceberg.
It’s no doubt that we live in a complacent world, living a complacent lifestyle. It’s obvious why these figures are so massive.
It is important to arm you with tools and information, then lead you from using our own personal experiences with research. The hope you open your mind into the big picture of your health. With the hopes that you are prepared for what is most likely an inevitable outcome of cancer. I’m not going to sugar coat it, only give it to you straight!
This is the basis of the Internal Architect Long-Term Lymphoma Survivorship Care Plan (IALTLSCP, that is a funny acronym! How do you pronounce that?)
Treatment Side Effects
There’s so may short term and long term side effects that Lymphoma Survivors go through. All the Chemotherapy and Radiation have created a monster when dealing with the number of side effects that survivors deal with. Some wonder if it’s even worth it.
From memory loss, nerve damage and heart issues to inflammation, infertility, pain and chronic digestion issues. One has to think, is the outcome worth all the suffering endured through treatment? I believe it is! I also believe in living…
Here is a general list of side effects that are experienced as a survivor!
Chemo Brain and Survivors Time Travel
What is Chemo Brain? This is a common term that us Lymphoma Survivors use as a way to describe the thinking and memory problems that happen after treatment. It is also called Chemo Fog.
I’m sure at this point you have heard about Chemo Brain. To be honest with you, there is not a lot of clinical studies on chemo brain and doctors are not sure what it really is. Apparently, it is a very tough condition to study. Researchers believe it is a misleading term because of the lack of science-based evidence that chemotherapy is the sole cause of the memory and concentration issues that happen with cancer patients and survivors.
My belief is the term is right on! The memory issues I experienced wasn’t only frustrating for me, but it drove my wife up a wall. For the first three to four years, remembering small things like going to the post office, getting milk at the grocery store, Setting my alarm to get up in the morning made daily chores more difficult.
It’s hard not to believe that the chemotherapy treatments don’t mess with your neuron function in the brain. It is possible that cancer itself can cause memory issues along with the stress of being diagnosed?
It’s probably safe to say that ALL OF THE ABOVE reigns true.
For some reason, chemo brain came on strong during and after treatment and persisted throughout my entire treatment regimen. My memory was never super good, but during treatment, it became horrible. Forgetting some of the easiest tasks that need to get done.
My attention span was terrible, getting sucked into the next shiny metal object. To this day, I still have some issues with memory and attention span. Albeit has gotten better since day +1 of remission.
During my treatment in 2009/2010, computer tablets like the iPad was a big hit and there were commercials touting memory games. An app I spent a lot of time on was Lumosity. This daily brain game was awesome in helping retrain my memory and challenge my attention. I admit I don’t play these games much these days. But I will say that you should give it a try and watch your improvement over time.
Survivors Time Travel is a term I used to help me understand what feels like chunks of time that I can’t recall. I believe that this is a side effect of chemotherapy. My thought is that all the chemo and toxins associated with it affect all the Neuron Synapse transmitters and receptors in the brain. Affecting my memory.
My logic tells me that all the chemicals and toxins within chemotherapy can cause neuropathy and does the same kind of damage with the Neurotransmission in the brain. And when it affects the areas of the brain that are responsible for your short term and long term memory, that’s where you get the chemo brain or fog.
I still have difficulty finding the right word during conversations. This is still an ongoing issue for me to this day.
Some other great ways
Reading and Writing
I have been able to combat these side effects and work on building up my knowledge is by reading and writing. I’ve gotten a lot more out of reading non-fiction and getting to know the understanding of psychology at a deeper level. This has been an interesting puzzle for me mostly because of all the challenges I’ve faced as a lymphoma survivor. Figuring out how to create a life I love while embracing my situation with Lymphoma.
Tea and Mushrooms
I’ve never been a coffee drinker, always thought it tasted burnt. So it was a drink that I never enjoyed. Tea, on the other hand, was easier for me to drink and touted much better benefits than coffee. Tea became a much bigger part of my diet after cancer because of the antioxidant properties that come with tea. Iced tea was also a good substitute for soda as long as I didn’t include any sugar.
Now, Mushrooms are a newer topic for me. There is a lot of good science surrounding the health benefits of Mushrooms and how certain one can help with the Neural Synapses not only in your brain but throughout your body.
I’ve been taking a Green Tea Matcha and Lion’s Mane Mushroom blend tea for a bit now. This has made me feel sharper and mentally quicker when it comes to the speed of everyday attention, memory, and decision making. I love feeling sharp and for the first time in my life, feeling like I’m on top of my game mentally!
Here is a good YouTube Video on tea and mushrooms and their benefits in helping with brain function
Something else that I’ve been very conscious about is not consuming a lot of alcohol. I know it’s more important to be sharply minded during my creative process, and I don’t want to dull the senses. With that said, I do like beer and wine. I’ve taken the school night approach. Only when there is no school (work) the next day. And that’s if I choose to. I’m just conscious about it.
Ultimately, Chemo Brain was driving me nuts. As I started researching a little bit about the brain, I got a simple understanding of how the brain functions. And alcohol only add to the cloudiness of my memory.
What is Neuropathy? Also called Peripheral Neuropathy. This is the damage of the peripheral nerves outside of your brain and spinal cord. These nerves send information between your brain and body.
Cancer and/or its treatment can cause damage to these peripheral nerves.
I’m going to be really honest, I did not experience any Neuropathy during and after my treatment. So my knowledge is very slim. But I did observe how painful it was with a business partner and close friend that unfortunately passed away from Pancreatic Cancer.
This article on “Nerve Problems and Neuropathy” from Cancer.net will help shine some light on what Neuropathy is all about. There is good information on how to combat Neuropathy through some medications and natural means at the end of this article.
What is Lymphedema? It is the swelling in the arms and legs caused by a Lymphatic System Blockage. It is caused most commonly by the removal of lymph nodes or damage caused by cancer treatments.
How to start treating Lymphedema? I didn’t deal with too much swelling. A little in my legs but nothing sever. Since I was relatively active through treatment. Walking was a great way to move and even got in our local pool to swim a little when I was feeling up to it. So activity was one of the best ways to deal with the swelling I had. Light exercise will help encourage fluid drainage of the affected limbs.
What are some other ways to treat this type of inflammation? Treatment can be done in a number of ways.
These are used to help aid in circulation.
My wife went through a surgery recently. She is prone to blood clots and the hospital gave her compression stocking for her legs that help her blood circulate in her legs.
What do Compression Garments do? These work by compressing the limb. They help reduce the diameter of enlarged veins. This helps with blood flow velocity and valve effectiveness. Which in turn helps reduce Swelling and promote better circulation. Most garments use a stronger elastic (spandex)that helps
In sport, these are used by high-performance athletes as a way to aid in oxygen flow and help support recovery. They also aid in keeping muscles warmed up to prevent strains and pulled muscles.
On a side note, compression garments are used in the beauty world as a way to appear slimmed down. And women use large compression stocking or wraps around their belly while expecting, but are also worn postpartum to help aid in abdominal support.
There are many benefits with the use of compression garments. Whether they are right for you should be discussed with your Primary Care Doctor.
Unfortunately with all the Chemotherapy and radiation therapy, what the treatment does to cell’s is amazing. Because most chemotherapy is administered into the bloodstream, that treatment makes its way through the bloodstream, into and through the Heart and pumped throughout the rest of the body. Chemo not only kills cancer cells but healthy cells as well. Chemo is toxic and poisonous. So think about that fact within itself.
My logic tells me that at some point, the Heart is also going to experience cell death and damage due to the treatment regime. Having the pure amount of treatment introduced intravenously leads me to believe that over time, issues like Congestive Heart Failure, Coronary Artery Disease, Arrhythmia, Hypertension, and Stroke just to name a few. These are most likely going to affect us at some point in the future.
I don’t know about you, but this makes a lot of sense to me.
So what can you do about future heart problems? This all comes back to lifestyle change. Obvious things like not smoking, exercise, adopting a healthy diet, and limiting your alcohol intake are just a few of the ways to curb the future issues of dealing with Heart issues.
I am a huge advocate for adding exercise into lifestyle. And have made a huge commitment to adjusting my lifestyle around physical activity.
If you have a family history of the heart issues I named above, you might want to look at getting some heart screening and tests done. Tests like the Echocardiogram and Multigated Acquisition Scan can help add to the bigger picture to your Survivorship Care Plan (SCP).
In the big picture of what chemotherapy does to cells in the body, cell damage in the lungs happens in a similar way as with the heart. Although treatments are becoming more targeted, chemotherapy kills both cancer and healthy tissue cells.
Chemotherapy pretty much damages every organ in the body that receives blood flow. Your lungs supply oxygen to the blood… well, you get the picture.
Unfortunately, every oncology patient has a higher risk of pulmonary complications because of toxicity from chemotherapy. Bleomycin, a chemo drug I took as part of the original ABVD regimen, is known to induce pulmonary fibrosis in the lab. The toxicity of this drug is one of the most extensively studied Chemotherapy Complications.
Again, I am no oncology expert, Just a survivor gathering intel!
I think one of the most obvious issues that leads to long term problems is Inflammation.
I don’t know about you, but the pain was always more common when I was swollen during my competitive years. My knees, for example, would always hurt after training for an event. To this day, I still deal with long term damage most likely caused by the physical grind of my youth.
Knowing how inflammation affected my body under physical stress, I can only imagine how it would affect organs and their function under Chemotherapy or Radiation stress. Observing a change in breathing habits and lung function only make sense and need to be paid attention to as a survivor!
Endocrine (Hormone) System Issues
As your probably well aware of my medical professional acknowledgment, my knowledge of Women’s hormone issues is as thorough as a highschool freshman’s written report.
What I do know is the Chemotherapy that I endured in preparation for my stem cell transplant, caused me to be Infertile. Or my spermies don’t work! I was asked if I wanted to bank sperm for a future child. But to be honest, the cost did not make sense to me. And my relationship included two bright young ladies that needed my help.
I made the choice to not bank my seed and instead, take on my stepdaughters as my own.
With chemotherapy being a toxic mix of drugs and chemicals, and because it is mainly administered into the blood intravenously, those drugs and toxins can make it to every part of the human body. Affecting all aspects of the Brain and Glands to Thyroid and pancreas, to Ovaries in women and Testicles in men.
Chemotherapy lowers men’s testosterone levels as well as affecting nerve ending making erections more difficult.
The list of what chemotherapy doesn’t effect is much smaller than what it does. If you go this route with treatment, make sure you ask all the questions you can think of with regards to your hormones and infertility before you decide on this course of treatment!
There are some studied that are linked with some of the bacteria that causes Periodontitis can play a part in the onset of pancreatic cancer as well as oral cancer and some other cancers. The study published by the British Journal of Cancer goes into the mechanism of the relationship at a molecular level.
So what’s the best way to fight against periodontitis? Start by brushing your teeth. 2-3 times a day along with flossing and water jetting.
While I was in the Transplant unit of Presbyterian St Luke’s, one of the routines I was in was to brush my teeth 5 times a day. The reasons for this was to keep my mouth as clean as possible and not develop ulcers while my immune system was at zero and rebuilding itself. For a little over thirty days, I brushed my teeth five times a day. A bit of a chore, but one that got me into a decent habit. I don’t brush my teeth that much these days, but very thorough twice a day along with flossing. Especially since I had a tooth removed!
Digestion Related Issues
There’s a lot of gut issues that we experience and becomes agitated after treatment. Chemotherapy just destroys the bacteria in your stomach and intestines. Here is a couple things to be on the lookout for.
Diarrhea is an uncomfortable but common side effect with people that receive cancer treatment. But it can also be a sign of something more serious.
Chemotherapy and Radiation can cause damage to the lining of the intestine, making them unable to do there job.
Aside from the embarrassing side of dealing with diarrhea, it can be serious if prolonged for longer than a couple of days. Here are five things you need to be aware of if you are experiencing Diarrhea…
There are some over the counter meds that can help with firming up you Poop like Imodium AD. This has fewer side effects than opioids and less addictive.
You’ll also want to keep an eye out for blood and if you have more than six loose movements a day! You will want to talk to your doctor about persisting issues that pertain to Diarrhea.
This is one of the worst feeling situations that i can remember. It’s not necessarily painful(although it can be), Really uncomfortable to the point that all you can think about is wanting to poop but can’t.
Pay attention if you become constipated. It could mean there is something more going on than just something that you ate. If it persists for longer than 2-3 weeks, go see you’re doctor!
Three common solutions to implement if you are constipated are…
Drink more water and less soda and coffee
Add more fiber to your diet like fruits, vegetables and whole grains.
Increase your physical activity
Brain and nerve issues
There are so many ways that treatment can affect the Lymphoma Survivor. In fact, I could probably write a couple of books on all the side effects just on Brain and Nerve issues. But I really want to hit on two of them for today’s purpose.
Hearing Loss is a common side effect of treatment. Because chemotherapy can do damage to nerve endings in and around your eardrum, it can also cause dizziness and affect your equilibrium.
I’m not sure that the hearing loss that I experienced is due to the use of heavy equipment or chemotherapy, but I do know that my hearing had gotten worse even while being diligent in the use of personal protective equipment (PPE). There was also a little time after treatment that I was experiencing a bit of vertigo, and I do occasionally experience a little dizziness. It’s not often, but it does happen even eight years in remission (8 years and 5 months as of this writing).
What I’ve been doing is adding some mushroom supplements into my diet. The feeling is I’ve been a little more aware and sharper with conversations. I still have some issues finding the right words, but feeling like an improvement is happening.
Also, I get an annual physical exam and do a separate physical for my commercial driver’s license. I may not go to an audiologist, but I do get screened for almost twice a year.
Increased risk of Stroke
This is probably the one long term side effect the scares me the most. Seeing family friends that have experienced a stroke, what it can do physically and neurologically makes me very conscious of what the future might hold for me.
Taking action into doing what I can to eliminate this future potential experience has been a big focus on what my lifestyle is and how to make it better. Exercise and Nutrition have become all-encompassing in regards to achieving my lifestyle dream.
The Irony is I know that having a perfect lifestyle won’t happen, the chaos of life will always throw a wrench into the mix. Daily circumstances will always prevent that from happening, but I’m aware of the decisions I make and do my best to limit the confusion that happens daily!
I’m never going to be able to go over all the issues that people will experience as a survivor. I just don’t have the knowledge or experience to help explain the feelings and emotions that someone will go through.
But how I can help is through my own experience of treatment and issues that have arisen since my treatment has ended.
Obviously, there are a lot more things you can do to combat all these side effects. I’ll continue writing and updating this post and add information as time goes on. And if you have anything you would like to add that has helped or would like to see on this list, let me know!
The Mental Challenges
The New Normal
This is a term I’m sure you have heard that helps set the stage in what’s it’s like to start living life as a new lymphoma survivor. There’s a realization that everything you know and feel is different. Along with your outlook on life. Opinions have changed, routines are different and even awkward. Even your Mindset is in a state of flux.
All your senses, feelings and thought processes are in a battle with your ego, making you question every decision and every observation.
This is a hugely critical time to become aware of your feelings. You do this through the need of creating and relearning important mental skills to move forward in this world we call “The New Normal”. As you embrace this philosophy, every aspect of life has the potential to become clearer and make more sense. We will never understand our world perfectly. It just can’t happen. But what can happen is have enough of an understanding that the decisions and choices you make are educated enough to feel at peace with where you’re at in this place in time.
The New Normal isn’t about going back to your life before your diagnoses, back to the old routines and habits. It’s about living the best life you can, at this moment. Creating new routines and habits and being confident in your happiness. Making choices that propel you towards good and give your life meaning!
The Waves of Life
I don’t think most people realize just how much life flows like an ocean wave. The peaks and valleys can sometimes be tough to navigate. Some days the water is still and glassy and other days the storm is in full effect with high tide and the boat is about to flip. With a little patience, the storm will subside and calmer waters will prevail. We’re able to catch our breath and depending on your Mindset, you’ll be able to look back at the experience and say “wow, that was crazy”.
As scary as it was facing my mortality, I’ve been able to take the experience and make it my own. Enjoying deep conversations with people about what it is that drives them, fears that they have, that I have. Even helping figure out what their purpose is.
I still deal with the peaks and valleys of life, constantly questioning my path, the frustration of learning new skills, wanting to quit. But patience has taught me to allow Time to solve some critical Mentality Shifts that get experienced. To bring me back to my center and remember what my ultimate goals are. What my purpose is.
This constantly reminds me of just how remarkably imperfect I am. There was no way I could do this before Lymphoma.
I am reminded of my treatment and the side effects of chemo every day. How that made my family and I feel. I got to see the good that it brought to my inner circle and the community I live in. I’m not focused on how polarizing our world is today.
I’m not focused on the newest post or comment from social media or care to share every moment of my life with strangers. Only in making that difference for a survivor that hasn’t found there way yet.
I like using the ocean as a way to demonstrate how someone’s life can go through such hardship and potentially come out the other side of the storm, beat up but alive to tell the story.
Don’t get me wrong, I’m fully aware that some people aren’t going to make it out the other side. That mental and physical struggle is very real and very complicated. It has brought me to tears on so many occasions. Even though there is a bond between us survivors, it just hurts a little more when there is a loss through cancer.
Hurdles you’ll Experience
Stress comes in many different forms. Medically speaking, there are 3 forms of stress that are defined by the American Psychological Association (APA). I’m going to go through each one to explain how these different stresses affect the body!
This is the most common type of stress and is usually caused by a reactive thought process. For the most part, it is usually brief in duration. A lot of times this happens when you have negative thoughts about an experience that recently occurred.
I experience Acute Stress more often than most with negative thoughts that repeat about an argument I’ve had or a fictional conversation with someone that angered me. It usually is about needing my point of view to be heard. Work deadlines are also a massive mental challenge that induces negative thoughts.
Some of the most common signs and symptoms of Acute Stress are as follows but not limited to:
Neck and back pain
Muscular tension that may lead to muscle, tendon and ligament issues.
Diarrhea or Constipation
Elevated Blood pressure and/or rapid heart rate
This is a short list of some transient Distresses that can be very damaging to you physically and emotionally over time. And how Acute Stress can cause issues as a new Lymphoma Survivor.
Episodic Acute Stress
This is the next step in the world of defining stress. People that suffer from Episodic Acute Stress have triggers that keep their mental bandwidth in perpetual overload. They have multiple responsibilities, always in a rush, have no organization discipline and essentially live their lives in a chaotic atmosphere.
If you’re a “Type A” personality, always aggressive, abrupt, impatient, have an overwhelming competitive need to be #1. Living like a tightly wound spring is tough on your body and mentally exhausting. Because of this lifestyle, there is an increased chance of “Coronary Heart Disease”!
***If you’re a “Worrier” personality, you’re constantly dealing with unrelenting negative thoughts. If you’re constantly seeing the negative thoughts in everything, expecting or projecting the worst in every situation. Their Core Beliefs essentially are the world is a dangerous, disheartening and disappointing place where something bad is always going to happen. Always being on guard like this can create an environment where they are overly anxious and pessimistic.***
Here are some of the signs and symptoms that come from emotional and cognitive distress. Things like:
Anxiety and Depression
Back and jaw pain
High blood pressure
Jeopardized attention and concentration
Compromised learning and memory issues
This is just a sliver of how Episodic Acute Stress can cause issues mentally as a new Lymphoma survivor
This is by far the worst of the three. Left untreated, can cause irreversible damage to your physical and mental health.
When a person feels hopeless and doesn’t see a solution to the cause of the stress, the tendency is to quit looking for a solution. There are a number of ways that an individual can end up in this mental quagmire. Because their behavioral actions are so habituated, professional help is needed to rewire and retrain the brain and body. Unfortunately, they will always be prone to stress being a hazard on the body and mind.
This is exactly the reason why I advocate Mental health for Lymphoma Survivors!!!!
Anxiety has become a pretty big mental issue in our modern world. Everything can become a trigger for someone to do something they may not like. The definition of anxiety is distress or uneasiness of mind caused by fear of danger or misfortune. That definition is from the iPhone dictionary app.
As cancer survivors, we deal with a little bit more anxiety than most others do. We deal with the issues of What if? What if my lymphoma comes back? We have to deal with waiting for answers. Waiting around for days and even weeks to hear the results of the most recent PET scan or CT scan. Even waiting to get the results for blood work. All this boils down to having the mental fortitude to deal with what might be the next big issue. And that is why we end up dealing with anxiety on a much greater level.
I’ve never been a big proponent for drugs, but there are some good anti-depressants and anti-anxiety meds that are worth their weight in gold. I used Ativan as a way to help deal with the anxiety that I was dealing with as my scan dates would get closer.
Dealing with severe anxiety each time I had to have a scan. This anxiety stems from the fact I had a recurrence. And the scan at that time showed that recurrence. All I’m saying is sometimes you need a little help in dealing with the situation at hand.
This is an unfortunate psychological feeling that is experienced as a Lymphoma and Cancer survivor. When you’re in the battle of treatment, your mentality becomes that of a fighter and you do everything you can to keep your focus on the task at hand. Beating the Disease!
So what happens when you kick its ass and finally are able to put the treatment experience behind you?
First, you’re going to relish in the experience that you beat the disease. Appreciate that you’re home starting to build new routines and working on the rehab that your doctors should have given you to do.
But what starts to creep into the psyche is the knowledge that there are those that haven’t made it. People that you met through treatment that couldn’t keep the fight going. Whether it was due to there staging, or were tired of fighting. There are many factors that affect that outcome.
What you feel personally is the regret that you did make it and for whatever reason, are still here. You didn’t succumb to what we all will eventually go through. What you feel is a whole slew of feelings. Anger, frustration, anxiety, despair, sorrow, and speechlessness to name a few.
This is absolutely normal and even expected. But no one will tell you to expect to feel these feelings.
When my friend and Strap In For Life co-founder passed away from Pancreatic Cancer in the spring of 2015, I almost went into depression. I lost a friend to something that I truly wish no one would ever experience.
I felt incredibly guilty for living. Why did my friend die and I survive?
During this time, I met another lymphoma survivor with a similar survival story as mine. Unfortunately, Last year he had a recurrence, and couldn’t pull through the stem-cell transplant that he underwent.
When you’re a new survivor, all the feelings you go through come from areas of the subconscious within the human psyche, where your excited that you beat this horrible disease, and from the exact opposite area where you feel heavy guilt that people you meet pass away from a disease that you wish no one ever experiences. This conflict creates a lot of confusion and is tough to assess and work through without help.
I’ve always been an advocate for Counselling and Emotional Well-being. I spent a lot of time working through the mental issues that come along with being a Lymphoma Survivor. There is a cancer survivorship stigma that working in this area of health is taboo and only for people with serious mental issues.
The reality is that just about everyone needs help in this area. Especially with this topic being a political hot potato these days.
So I’m giving you permission to go talk to a counselor about what your feeling and what the experience of being a survivor has been for you up to this point! It’s going to take a number of sessions but what your able to talk through is absolutely next level!
Taking the Time to Rebuild
When I was discharged from PSL in Denver after my stem cell transplant, I was given very little information in regards to what to expect after everything I’ve been through. Mostly the conversations were what really stuck with me. I remember asking my stem cell transplant doctor the question, What should I be doing now that I’m living in remission? His best advice was getting as much exercise as you can and be in as clean environment as possible.
There was no discussion about physical and mental rehabilitation, nothing about nutrition, nothing about re-entering social and work-related environments.
But at the time, I was content with that answer. I didn’t know much going into this experience when I was diagnosed. So why would I have thought it was going to be an easy path on how to live as a Lymphoma Survivor?
Nothing was ever said about the ghost pains and anxiety you experience thinking that maybe cancer is coming back. It was ever said about the stress it puts on your family. And especially the topic about the financial hardship it puts you through even with an insurance plan that covers cancer. Why would they?
This is WHY I’ve taken matters into my own hands.
Taking the time to rebuild is fundamentals the place where the past and the future truly become defined. In the past is your life leading up to diagnosis and even including all the treatment that you went through to conquer the Lymphoma or cancer you had.
The future is day +1 in remission. It’s hopefully the moment that you put the old you behind you. It will never happen completely, especially during the first 5 years after your last treatment. But the mentality and mindset you move forward with are what matters most.
In a Growth Mindset, meaning that all your experiences from Day +1 is about learning from mistakes, curiosity about other outcomes from decisions and charging forward with the intention that each decision you make is the most well informed and open-minded. Able to take a failure and learn from it. Your mentality is that of a conqueror. Open to the challenge, kind and considerate no matter the circumstance. But open to the idea that there is always a better way. You don’t get distracted by hate and poor decisions of other people. No matter which form it is presented to you. Your time is the most precious asset you have and know that its FINITE! This is the Internal Architect’s Ideology!
This is important for a number of reasons. But the two most important ones have to do with well being.
First one is the health benefits. We live in a world that is just about purely based on convenience of consumption. Everywhere you look, convenience is the name of the game. Every speck of information is available at the touch of a screen, in a device that has more computing power than the rocket that took our astronauts to the moon.
As it turns out, by doing physical exercise, you can get a similar feeling of gratification because your body produces the hormones and chemicals that make you feel good. And you get the benefit of taking care of your body this way also.
But we’ve become so lazy and complacent that it’s hard to find the motivation to do such positive activity. It is much easier to sit down in front of the TV and “zone out”. It is much easier to pull your smartphone out of your pocket and see if you got a response on your social media. It’s so much easier to say “I’ll do it tomorrow” or “I’ll get to it tomorrow”. It’s so much easier to crack open that beer or pour yourself that cocktail and forget about the problems of the day or the issues going on at work.
I’m sure you have seen how everyone is staring at their cellphones when you’re walking along the sidewalk or in any public area. Locked into what is going on within the cloud. I’ve noticed the same thing at the gym. Shocking!
It is harder to tie your shoes and go outside for a walk or run. Even harder to go outside and ride your bike a few miles. And in the winter, It’s harder to get suited up and go snowboarding for the afternoon. But you know what, it is so much more rewarding to take action and feel good than it is to be lazy and complain about it. Leave your phone in your pocket, and be present in the moment.
It’s a goal of mine to do something very physical three days a week. This has become an easier thing for me as I have found activities that I enjoy doing. In the summertime, I ride my bike to work and back. I leave a little early so I can take a longer route getting there. 8-10 miles in the morning and 8-15 miles in the afternoon.
Summer is easy cause there is so much daylight. In the winter, I snowboard, splitboard and cross country ski. Winter is the toughest time as daylight prohibits me from doing a whole lot in the day because of work. So I do some simple night skiing or stretching time allowing. I guess it’s the athlete in me.
The point is, I do what it takes to be active and work on my fitness no matter the weather. And because of this, I sleep better, my weight is down and able to maintain it through the winter. Blood pressure is down, stress and anxiety are down. This has created a much better lifestyle and created much more peace in my life. Helping me deal with difficult situations that much better.
Your body produces all of the chemicals and hormones your body needs to feel good. And as your health improves, so does all the symptoms of the disease that come along with the improvement! Even over time, there is an improved sense of mental stress being solved.
About three years ago, I felt like I wasn’t in a good place physically. I was at my heaviest weight of 238 pounds and feeling like I was on the verge of being diabetic. And then I bought my coworker’s mountain bike. I started to ride every day. Enjoying the freedom so much I ended up getting a new bike the next summer and proceeded to lose 30 pounds. That winter I gained some weight but lost it all the following summer. Today, I am maintaining a weight of 203 and have all winter! By adding activities 3 days a week, I’m helping maintain that weight and get the bonus of exploring some really cool areas around my community.
This has really helped in maintaining a healthy mindset and setting a great example for my family as well!
I’m always going to be a big advocate for a healthy lifestyle. It has taken a lot of discipline on my part and I’m proof of the results.
Exercise isn’t going to fix everything, it’s an addition to a healthy lifestyle and becoming aware of your entire surroundings.
As a Lymphoma survivor, I’m hopeful that you’re already hyper-aware of what’s going on with your body and have a basic understanding of biology.
My infusions were every two weeks. The first week was spent sleeping, walking, reading. Dealing with the immediate side effects of the chemo. More often than not, I wouldn’t want to do anything. Week two was recovery. I would be more active, push myself but not overdo it. It took a couple of infusions to really find a routine that worked for me. To figure out what I could and should not do.
The last thing I want you to do is to sit around and become stale, lazy and complacent. Our bodies need to move and do things even if we have been through hell and back.
During treatment, I walked daily. Whether it was at the gym or around the block in the subdivision I lived at. I had to force myself to do it for the following week after infusion. I wanted to be lazy, but deep down I know that I if I stopped moving, that could be the end.
Some of the other activities I would do mostly on my off week would be swimming at the pool in our local Gym, and I even went snowboarding a handful of times.
Finding activities that you like is paramount to creating a mindset that will motivate you to grow and stay positive and learn through this uncomfortable and often times painful experience.
It’s important to let you know that you need to dig deep in finding an activity to do. I’m fortunate to live in a very active community with world-class facilities. But that doesn’t give you the excuse to not be active in your own community. I bet you there are some small social groups of people that are doing just that. Do a little research and see what pops up.
I have found that You’re Mental Health has presented the hardest challenges as a survivor. That stigma of Cancer and what it does to your psyche is incredibly damaging. When you’re faced with your mortality and your physically broken from treatment, how do you muster the courage and energy to forge forward?
There are two really important parts to the start of the conscious path of rebuilding your confidence and your psyche state. Both of these work hand in hand and take discipline.
We all carry some baggage from our past. There might be regrets regarding the actions we took. There might be frustrations or anger about a relationship that went sour. Or maybe you never fully grieved over the loss of someone that was close to you. This dark environment that you might be feeling is like a low-grade depression. There are so many potentialities that when you add Cancer to the mix, your personal environment is toxic.
I had a number of situations that added to my Toxic Personal Environment. I was bitter and upset with how my snowboard career ended, I went through a divorce and even lost some friends at an early age. All this put my psychological state into that low-grade depression. I was drinking too much, my diet was horrible. I was just not making good choices.
As I look back, I was doing everything I could to provide the best environment for cancer to begin.
I think it’s important to know that there is no right answer to the how’s and why’s a person develops cancer. Everything in our environment is toxic and considered a carcinogen. Even the water we drink has known carcinogens added to it. Fluoride being the simplest example.
Forgiveness is the start of breaking down barriers that have been restraining you from the happiness and peace in your life. True Forgiveness allows you to move past the hard situations that have made you frustrated and angry. But forgiveness comes in more than one form. Obviously, forgiving the people and situations that wronged you in the past is hugely important. But the hardest one is to Forgive Yourself for the anger and frustrations you feel about the people and situations that wronged you in your past.
We need a way to let go of past experiences in order to remove our mental bandwidth.
We’ve all made mistakes and carry some sort of regret and a heavy heart because of them.
This is where your Mindset comes into play. There are two mindsets. A Fixed mindset believing your qualities are carved in stone. And the Growth Mindset is believing you can cultivate your qualities through your efforts.
Dr. Carol Dweck is a renounced child psychologist that specializes in the Mindsets of children. This is a great book and resource to help put into perspective the mentality shift that you must undergo while creating the new foundation to rebuild yourself. Because that’s what your about to do, Rebuild yourself. Buy a copy of her book here!
After my work in the snowboard world ended, I got involved in the family business of excavation contracting. This led to the development and an understanding of the construction industry from the ground up.
I took a very hands-on approach. Got dirty and in the trenches. I learned the essence of the business, discipline and what it means to follow through. That’s what’s cool with the construction industry, in order to get good, you have to get dirty.
I believe the same is true for personal conscious development. You have to learn your essence which is constantly flowing and you got to be disciplined in the actions you take. Because when you follow through, the outcome is absolutely amazing!
You really have to dig deep and start asking deeply personal questions and be honest with yourself.
After we go through the lesson and exercise of Forgiveness, now it’s time to start working on the Mindset.
When we finish up all the chemotherapy, blood work, surgeries and scans (not that they are ever finished) we are essentially thrown back into the world with no direction, purpose, or meaning. Only a sense of frustration. There is no time to adjust back into the real-time world. There is a feeling of no compassion, only the notion that you have to pick back up where you left off. That everything will be normal again.
But everything is not!
Your Mindset is critical in helping with this adjustment. Physically, you’ve probably lost a lot of weight or gained a substantial amount from steroids within your treatment regimen. I personally lost a lot of weight. Regardless, now we need to get your mind into a state of growth to prepaid for the challenges that you will face.
I talk a lot about Mindset throughout all my teachings and in other areas of this blog post. This has been so important in tackling the challenges faced in life after cancer.
The challenges of facing life and becoming ok as a survivor. Forgivnance and Mindset together create a great formula to start the transformation.
PTSD after Lymphoma
The definition of PTSD is in the Merriam-Webster dictionary is Post Traumatic Stress Disorder.
PTSD is a very real issue when it comes to lymphoma and cancer survivors. There is no good way to explain the sheer amount of mental challenges that are experienced after surviving a cancer experience. The depth as to how this affects your psyche has only begun to be studied.
Most people associate PTSD with war veterans or anyone that’s been involved in a violent crime. But I think it is important to group Lymphoma and Cancer survivors as people that suffer from PTSD also.
The psychological stress the cancer experience causes should raise a lot of red flags to health care providers.
The burden is heavy enough to survive cancer let alone deal with all the feelings of sadness, hopelessness, anxiety, tiredness, irritability, concentration issues, or frequent thoughts of death or suicide. It’s a lot to take in and a lot to process for new survivors.
And unfortunately, there is no pamphlet or worksheet that will teach you this. I’ve found that only relatable experiences have helped make sense of the chaos that follows a good period of time after treatment.
I made a great Youtube video about PTSD and Cancer that you should check out HERE. I discuss this with my stepdaughter Rayna Macias. She is pursuing a career in social services and is invested pretty heavily in psychology.
I started out recording videos as a way to creatively unload all the topics that were swimming around in my head. There are so many facets to life as a Lymphoma survivor. This turned out to be a great way to express my thoughts in a way that I could help others going through the same thing.
To date, I have over 130 videos on topics ranging from PTSD to Chemo Brain to Scan Anxiety and even dive into the philosophy of living a life filled with Peace as a lymphoma survivor.
The intent of the channel is to give value to survivors, especially those that are dealing with the understanding of what to do now that you’re in a position to rebuild your life. And the goal is to help you rebuild with meaning and purpose! This is not an easy task, and a lot of people will sink back into the Frey. But for those that want something more, to find something meaningful to base life around, that’s what I’m here for.
If it’s easier to watch videos, click the link above to see the channel and as to be so kind to subscribe if you like the content.
If it’s easier to listen to audio, I created a podcast on Soundcloud where I take the video’s and turn them into a podcast for those that find it easier to listen to the audio. I have not syndicated the content to other platforms like iTunes yet but is a goal. Please be patient as it is in the works.
Aside from the book, this is where the meat and potatoes of what I teach are located. It is my goal to have all types of resources for survivors located in one spot. The blog is in-depth and has even more useful info. In fact, if you are reading this post, you’re already there!
I’m trying my best to make this as easy as possible to anyone that needs help with the confusion that goes on after lymphoma treatment. Or cancer treatment for that matter.
If you go to the beginning of my blog posts, you will find the writings I created to help sort through the feelings and emotions during treatment. This was a way for me to share my journey with family and friends. I wanted to make sure that these were preserved for anyone needing to relate to an experience through emotion.
If you click on the tab at the top that says Funding, it will give you a list of financial resources you can apply for to help with the financial burden that lymphoma leaves us with.
I created a page with links and phone numbers to all sorts of cancer resources. This is huge to have in one spot with easy access. No searching through websites looking for links buried deep in pages. Click here to go to that page or on my home page and click the Funding tab at the top.
I am a huge proponent and believe at a very deep level that mental health for lymphoma survivors and caregivers is critically important. Even though I’m going on eight and a half years in remission as of this writing, I still go to a therapist once or twice a year to talk through the issues that continue to plague my subconscious. I absolutely despise feeling depressed and will do anything to combat that feeling.
I see every day in support group threads that there is a need for cancer survivorship supporting people that are struggling after treatment. A diagnosis upends everything that you know. Everything that you believe. It tests your faith and your sense of belonging. Literally makes you question everything you know and thought were correct and true. It’s very complicated and not so easy to know.
A therapist can help work through the feelings and emotions that you’re going through. Help organize your thoughts and over time, restructure the basic thoughts and help put them into context. I found this process really amazing and incredibly enlightening.
Another type of therapy was finding a creative outlet. I was never a good writer growing up. Working really hard in school to pass and graduate high school. I hated writing because I sucked at it. Slowly, writing became my way to express my thoughts and as it turns out, one of my biggest internal growth periods.
I had an Idea and desire to write a book about my experience and my lessons within the first five years after treatment. The spark came from reading things that interested me. Especially topics on self-publishing.
But in the last year, I’ve moved more towards videos as a way to express my thoughts on survivorship topics. It’s been fun and really enjoyed the process.
I believe that this is also incredibly important as a way to start working through the chaos that is drifting around in your head.
The clarity started to happen as I was “emptying my cup” as the saying goes. Whether I was writing or making videos, the outlet was the way of clearing a path to an understanding of Meaning and Peace in my life.
Now I have no idea if writing will work for you. But I’m sure that there is a way for you to express what you’re thinking about and potentially help other people. The only way to find your way is by taking action.
Ongoing Physical Therapy
Not much thought goes into what your body will end up like after treatment. The chemotherapy really does a number on every part of your body including bone and muscular atrophy. And if your involved in that type of treatment, there is no way around it.
For a lot of us, we have access to tools and some resources that will help get our lives going again with some physical therapy paid for by our insurance companies. But there is a growing number of us that are left to fend for ourselves.
And in today’s political world, Health insurance has become increasingly harder to solve. A hot potato so to say!
That why it’s important to understand what your policy says. To know what’s in it.
Click Here heck out this video I made about reading your insurance policy.
So what do you do if you got through treatment and your insurance policy won’t cover insurance or don’t have insurance at all?
You take matters into your own hands!
Taking action is incredibly difficult to do, but the hardest part is habituating the actions and making them standard practice and part of your daily routine.
(Here’s a little secret, no one is going to judge you for your choices now that you’re a lymphoma survivor. And if they do, F#$@ them! They are not worth your time.)
There’s a lot of information online and I’ll continue to create info that is necessary for you to become successful in beating the challenges as a survivor!
I’m going to be really honest, I love massages. This is manipulation of the soft tissues (skin and muscle) within the body.
The purpose of Massage is to relieve stress and pain in the body. This needs to be cautiously approached. If you had issues with Lymphedema, make sure you, your doctor and oncologist are on the same page, and your expectations for the outcome is known. Reason being, massage releases a lot of toxins back into the body and your circulatory system must deal with them. Hence your lymphatic system. This needs to be approached slowly, and I believe over time will make a difference in how you move and your range of motion. It has for me.
Move More, Eat Less
This is a pretty simple idea and an effective at that. A co-worker of mine first mentioned this idea as we were talking about summer goals and plans. Move more and eat less. I’ve been seeing this idea pop up in numerous areas and was featured on Dr. Oz’s program.
With the Obesity epidemic in the United States and growing among many other countries, Lifestyle is becoming one of the most important aspects to enjoying a cancer free life.
I love food! With the addition of Sport in my life and being hyper aware of the pure amount of food I eat, losing over 30 pounds and maintaining this weight has been a huge shift in my approach with food. I will admit that i will eat a lot of food after a big bike ride, but overall they quality and amount I eat is so much better.
So now that we’ve gotten through a huge amount of information in regards to the understanding of your cancer and the battles you’ll face as a survivor, what kind of action are you taking towards not having to go through cancer again?
This is a really important question. And you need to ask yourself what it means to you.
I don’t want to know what you’re going to do. After going through everything thing that I’m giving you, what steps have you started implementing to creating the change to not go through this experience again?
For me, I started reading everything about nutrition and cancer. I wanted to know if there was another way. Something to remember, it’s easy to over inform yourself. To creep deeper down the rabbit hole. The same issue arises as a survivor and as a new patient. Too much information can cause fear and not take action.
There are a lot of great youtube channels to watch and inform yourself about nutrition and also find more info about the history of cancer.
I’ve taken a much bigger interest in Nutrition mostly because of my Stem Cell Transplant experience and as someone that spends a lot of time on a mountain bike.
During my time in PSL’s hematology unit, I was curious why I couldn’t get fresh fruits and veggies. Only over cooked meals and starches. I was told that I would interfere with the chemotherapy and cause havoc while I was Neutropenic. If I got a bad piece of fruit or vegetable that had a bug and made me sick, I could possibly not recover from it. That made sense while I had no immune system. But as my immune system grew and became stronger. I was continued to be told I could not have fresh produce.
Not once did anyone tell me that I needed to be conscious of my diet. Nor did anyone tell me about the importance of what our diet consists of. Now in all fairness, I’m not perfect. But I’m incredibly aware of what I eat. Consciously knowing that sometimes I may not be able to get the best nutrition all the time. But I do my best to ease the food addictions that I have.
At this point, your probably very aware of just how bad refined sugar is. It’s in everything we consume. There is no real good way to avoid it, only limit it.
This has been incredibly difficult with my exercise regimen. When you end up burning up as much as 3000 calories, your body needs to replenish itself with basic carbohydrates. Glucose is a sugar that your body turns into energy. And glucose is the main power source for your mitochondria in your bodies cells.
Here is my opinion. If you’re feeding your body with good Wholesome foods, like vegetables and whole grains and lean meats, then you’re feeding your body the essentials of what it needs to work correctly. The problem lies in the amount of processed foods that are in everything that we consume. My big question is why is there no training for our doctors and oncologist to TEACH us about prevention with the diets that we consume? It’s because they don’t know themselves!
Oncology Treatment Plan Summary and Family and Medical History
This is a full summary of what your entire experience consisted of. It will summarize everything that you went through including tests, scans, surgeries, and treatments. This is nice to have In case you decide to move to a different state or move abroad. The two places you can get this info is from your oncologist or your primary care doctor. This should be all the info you need about your cancer specifics.
What kind of Cancer
List of treatments
List of surgeries
List of prescriptions and OTC meds
Allergens and medical allergies
List of Vaccinations and immunizations
As for your family medical history, this is a little harder and takes some digging into your family background. If you can, ask your family about any medical issues they had. This is nice to have as a Just In Case type of info.
Follow up Care and Blood Work
You’re Oncologist will recommend that you have multiple check ups, tests and blood work over the next five years into remission. My insurance didn’t allow that to happen and had to cancel the second year I was in remission. All because my premium went up almost 500% in 6 months. Probably trying to get some of that money back I guess. I could not afford it. I haven’t had a PET scan in over 5 years. But i do blood work about twice a year to keep an eye on my counts.
I’m sure there is a lot that I missed while writing this Cancer Survivorship plan. But I wanted to start somewhere and get it published. This information is too valuable to sit on and hide on my computer. This is a start and a place you can come to and find information that you will need for the different part of your journey as a survivor. And now there is information that you can use to start rebuilding a better you.
It is so important to take our health seriously. And Imean this at a deep level. I truly believe that the only way that we are going to beat cancer is by changing our daily habits to where we enjoy a healthy lifestyle by becoming aware of everything that is going on around us. The air we breath, food we eat. The exercise we get and the company we surround ourselves with.
This is an endless journey and what you will learn will surprise, challenge and excite you! You will feel every single emotion that you can think of and expect the unexpected.
Now is the time to take action and make those changes that will make a difference no only in your life, but your family’s as well!
I’ve been getting involved in the support groups and chats through Reddit and Facebook lately. I think some of you probably know how I feel about my Facebook usage.
It’s been important for me as a survivor to start being involved. There’s a lot of people that are really confused and scared about the process that goes on after you’ve been diagnosed or as you are being diagnosed.
There are a number of things that go on when you start down this road. And there’s a lot of fear that goes on because you are jumping into the unknown. The good news is you might start getting some answers into what is going on with you. Why you might be feeling as bad as you have.
I want to share a little bit of my story about the first couple of days within my diagnosis.
The intention that it’ll help give you an idea of what to expect.
When I went into the hospital, I went in because I had what felt like gas pains. I had a cramp in my right side underneath my rib cage, right around where your liver sits. The pain came on very unexpectedly on a sunny day in November. As the day went on, it didn’t get any better and things transpired from there.
I told myself if it doesn’t get any better by the next day, I’m going to go to the hospital emergency room. And that’s what ended up happening the next morning. I woke up, and moved around, that cramp came right back.
Mom drove me down to the emergency room the following morning. That’s where my story really started to unfold. I did a CT scan of my chest area and we were able to determine that the scan of my liver did not look right. And it actually looked like a bag of bird seed. That is what the consistency looked like. Just really kind of spotty. There was no solid consistency to it.
So we end up getting me down to Saint Anthony’s Central hospital in Denver that night.
Click on the Podcast if your on the go!
That’s where everything started to get real.
Within the first three days, I had a liver biopsy, and a lymph node surgically removed under my arm pit. and by day five, the pathology came back saying I was diagnosed with Hodgkin’s Lymphoma.
My First PET Scan and Chemo
This is when I underwent my first pet scan and that was just absolutely crazy. And By day 10, my first round of chemotherapy. And that’s where my world of reality became absolute mayhem.
Over time, it got a little bit easier for me to process. I started to understand the routine and was able to move forward and learned to zone everything out. But was still dealing with a lot of fear from my own mortality. And I didn’t know how to deal with that stress. I talked counselors about what I was going though. Fortunately, there were some resources at hand to help me deal with that. So that was one of the biggest things.
I want to really focus back to the biopsy side of my experience. Some of the questions that I’ve been answering are on Reddit and Facebook about biopsies and if there painful. I vividly remember the needle going into my side right below my lower right rib.
“The liver biopsy felt like I was being stabbed, slowly”.
The surgeon taking pieces of my liver. I could feel him just in there. It was the weirdest, painful thing I’ve ever felt in my life. I could feel a little grabber is coming in and, and just grabbing and tearing pieces. The surgeon took six little pieces of my liver. Immediately after the sixth biopsy was taken, they knocked me out.
It took a little bit of mental preparation for me. Fortunately, I had a friend that had gone through a liver biopsy due to a different disease. He informed me about it and that it’s going to suck, but there’s just no way around it.
Always a mental challenge
So prepare yourself mentally to have the biopsies done.
Once I had a recurrence, I had another biopsy done. At a different place in my body.
We tried to do a bronchoscopy at first. THat biopsy is where you go through the nose. We tried to get a sample of a lymph node that was essentially right above my heart in my chest. The best way the doctor wanted to go was through my nose to see if they could get it. But because it’s in such a precarious place, they couldn’t do it.
The next procedure was called a mediastinoscopy.
They ended up opening me up in my neck where a tracheotomy would be. We were able to get a biopsy of that lymph node and confirm that my Hodgkin’s came back. Fortunately, I was knocked out for this biopsy because of the incision in my neck.
And that’s where everything kind of led down the road to my autologous stem cell transplant.
With the Liver biopsy, because the liver metabolizes drugs so quick, that is the main reason why they didn’t knock you out. And I just had to endure the pain of it. It taught me that this is something that you deal with when you’re going through cancer.
Everything that could happen, can happen. Doesn’t mean it will, but it’s good to shift that focus, mentality and that mindset into.
I got to do what I gotta do to make sure that I can get through this as quickly and is healthy wise as I possibly can.
So just remember, you’re going through diagnosis and if you have to do biopsies, just mentally prepare yourself that it’s going to suck. And if you can your mindset that way, it’s going to make the entire experience a little bit better.
You will start to feel a little more comfortable knowing that once you do this, you can move on to the next challenge.
I’ve always been kind of one to just jump in and take action to get this thing done. I want to do this now. I want to get it over with. So if I can do that and if I can make that happen as fast as possible, then so be it.
And that’s how I approached my liver biopsy.
And the rest of it for me is history. Take the time to really prepare yourself for biopsy because there’s undoubtedly a lot of fear that goes on and a lot of confusion and anger.
And I mean you will go through the entire gamut of feelings, not only because you’re going through cancer, but now you have to do all these surgical procedures that really keep you on your toes. And if you can, prepare yourself for all the anxiety’s that come up and when you’re first starting out, understand there is no easy way to approach cancer.
It’s not easy. None of it’s easy!
A lot of positive self talk, a lot of meditation, a lot of doing your best to be around people that can support you as best as you can. And I know that there are a lot of you out there that don’t have the support.
So this is where you have to dig really deep and be your own best support group. Fortunately there starting to be some more survivor and patient resources online starting to pop up, which is really good. Facebook has a couple good ones, Reddit has some really good ones too. Also, Quora is also a good place to ask questions.
So please take a look at those and ask your questions because there are plenty of people that have been out there.
Unfortunately, the medical industry has not done a very good job in helping with survivorship issues, psychology problems and other physical problems. You kind of must go at it alone, but I want you to know that you’re not alone.
Be prepared, start doing a little bit of research. You’re going to be okay and you’re just gonna fight like you’ve never fought before.
Thanks for reading and If you have any questions, hit me in th comment section below.
It’s safe to say that I was a pretty lost soul after getting out of the hematology floor at Presbyterian St. Luke’s in Denver. Of course, I was excited for the fact that I was alive and able to share my story.
The reality was a very scary proposition. I essentially came out of the hospital as a clean slate. A blank canvas.
And that was a scary thought. There was a lot of fear at the time, mostly because the unknown was laid out in front of me.
I was dealing with recurrence fears, I knew that I was having memory issues. and just the overall feeling that my health was going to be a challenge for the rest of my life.
But there was an underlying excitement. The opportunity had given me a chance to rebuild my life. The unknown gave me a chance to refresh my body and my soul.
All I knew was what I wanted and what I didn’t. The old normal was a thing of the past.
Thats when I started prioritizing the things that were most important to me. And since I used all of my financial resources to battle my lymphoma, I knew this was going to be a tough road.
Fortunately I had a couple people mentor me after my cancer experience. This started me down the path to figure out the next steps within this blank canvas.
A pattern emerged. All of them asked me one important question…
What is your “Why”? Why this question is so important
We got really deep into my psyche and battled my ego.
Why do you work? Why do you want to help people? Why do you want to start a business? Why do you want to live?
This is a pretty scary question. This question gets to the heart of a lot of what it means to be you! And when you think about it, understanding this word really becomes an all encompassing question at a very deep level.
Before lymphoma, this question and many others we’re never asked. They were never discussed. And there’s a good chance I wasn’t ready to answer those questions.
I was a pretty lost soul after all my snowboarding endeavors fizzled out. Broken some may say.
I truly believe that lymphoma saved my life. it helped me understand my purpose. It helped me define who I am.
By asking yourself “WHY” is the start of digging deep into the motives and decisions that make up everything you are and want to be. It makes you question your own psychology. All your theories in life.
For most people after dealing with a life changing event or situation, it’s only natural to start asking deep-rooted questions about themselves.
The curiosity of life’s purpose!
The best way for me to describe it is there was a burning in need within myself to start understanding what my purpose in life was. I knew I wanted to help people and I knew that survivors and caregivers needed help once they got out of the hospital after their last treatment.
So for the last eight years, I’ve been slowly creating a survivorship care plan to help guide survivors through the twists and turns that they will experience in their “New Normal”.
I go deeper into this question and the psychology in my book Internal Architect. In the chapter, The 4-W’s, I hit onto a more encompassing strategy of why you need to question yourself after cancer.