Do You, For You!

You Need To Be Your Own Best Advocate!

Speak Up and Be Heard

     Being your own advocate as a cancer patient means taking an active and informed role in your healthcare journey. It means expressing your concerns and preferences to your healthcare team to ensure you receive the best possible care and support during your cancer diagnosis and treatment.

     Early on I found out how important it was to be actively involved and participating in my healthcare decisions. When first diagnosed I knew virtually nothing about my type of leukemia. I spent many hours searching the internet for relevant information to help me understand what I was up against and what the latest recommended treatment options were. I joined an online CLL support group and I learned from other CLLer's (Chronic lymphocytic leukemia) who were in different stages of their cancer.

     I learned that most leukemia/cancer patients have low vitamin D levels. I (advocated) brought this up to my primary doctor to get tested. The results indicated I had a very low vitamin D level, and I was put on a prescription level dose to boost my level back into the normal range.

     There have been times I have said no to certain procedures (advocate) such as frequent x-rays to determine the accumulation of leukemia cells in my abdomen. I discovered these were not necessary unless I had other symptoms or abdominal discomfort. I was concerned about the effect of excessive x-rays would have on my already weakened immune system.

     After experiencing an extremely painful bone marrow biopsy I (advocated) any future ones to be done under general anesthesia. Lesson learned, never again.

     My first year with leukemia I quickly maxed out my insurance deductible and my total medical bill soared. My cancer related expenses added up quickly and definitely caused me a lot of mental stress. I learned to (advocate) request all doctors, tests, and treatments to be from the same healthcare provider so I wouldn't get swamped with medical bills coming from all directions. I was able to work out a monthly payment plan of which I am still paying off today.

     I also had two bills go into collections because I thought I would receive just one bill for my healthcare services since I only went to one provider. Just because you see one healthcare provider doesn't mean all the other associated cancer bills will come from them. I was so naive. It took me several years to restore my credit. Now I know.  So based on my experiences I always ask, "Will my insurance cover this?". (advocate)

Note:  Starting in 2022 Congress enacted the "No Surprises Act" to protect consumers from surprise medical bills.  This is something all cancer patients should be aware of.

• No Surprises:  Understand your rights against surprise medical bills.
• What is a "surprise medical bill" and what should I know about the No Surprises Act?

     The No Surprises Act protects people covered under group and individual health plans from receiving surprise medical bills when they receive most emergency services, non-emergency services from out-of-network providers at in-network facilities, and services from out-of-network air ambulance service providers. What took them so long to pass something like this to protect patients?  Please, take the time and read the links above so you can become a better-informed cancer patient, it may save you money.

     My healthcare team stepped up to the plate when I asked (advocated) about assistance and additional resources to pay for my medical bills. They assisted me in applying for a grant with the Leukemia Lymphoma Society. This money went directly to my healthcare provider.  Ask your healthcare team or hospital social worker if there are any other outside organizations that can help you manage your medical and other related expenses.  Believe me, they want to get paid, and they should be in the "know" where you can turn to for additional help.

     They also came to my rescue when I relapsed, and my insurance company refused to pay for my doctor recommended treatment.  (I'm really starting to dislike insurance companies and the loopholes or dumbass reasons they use to deny coverage which puts people's lives at stake).  I am grateful my medical team (advocated) on my behalf, and I was able to receive the treatment free through the drug company's patient assistance program.

     These are just some examples I experienced of the importance of becoming your own best advocate. It's tough enough managing a cancer diagnosis without the additional burden of financial stress as you try and figure out ways to manage your healthcare bills. Does this affect your mental wellbeing? You bet it does! I've had many sleepless nights worrying about the cost of my cancer care and how to manage it.  Do not hesitate to ask for help from your medical team because they may have resources to assist you that you may not be aware of.

     I love my healthcare team (doctors, nurses, and social workers) for assisting me in solving some of these issues. They have been fantastic! I've learned to be proactive in my treatment plan. This approach has definitely helped me become an empowered cancer patient.

     Remember this, there is no right or wrong way to live with cancer. Everyone dealing with cancer has a different situation.  I've learned patients who have the same cancer may dealing with an entirely different set of circumstances including financial.  I just like to stress you have a right for your voice to be heard and for you to stick up for yourself when the big bully called cancer comes knocking at your door.

Here are some things you should consider to being your own best advocate:

1. Education: Learn about your specific type of cancer, its stage, treatment options, and potential side effects. Understanding your condition empowers you to make informed decisions.
2. Communication: Ask questions, seek clarification, and express your concerns and preferences. Work with your medical team to make the best decisions for your individual situation.
3. Second opinions: Don't hesitate to seek a second opinion from another qualified oncologist or medical specialist. It can provide you with additional insights and confirm the recommended treatment plan.
4. Health insurance and finances: Understand your health insurance coverage, including deductibles and out-of-pocket expenses. Advocate for yourself by seeking financial assistance or counseling, if necessary, with your medical team.  Most healthcare facilities have social workers to assist you for things you do not understand.
5. Treatment options: Understand the various treatment options available, including potential clinical trials. Work with your healthcare team to explore all available avenues and make decisions important to you.
6. Side effects and symptom management: Be proactive in managing side effects and symptoms related to your treatment. Report any discomfort or issues to your healthcare team promptly so that they can be addressed.
7. Support system: Join a support group for your particular cancer. They can provide emotional support and help you navigate the healthcare system.  You can learn from others who have walked the path you are on now.  Highly recommended.
8. Advance care planning: Consider discussing and documenting your healthcare preferences, such as end-of-life care, in advance care directives or living wills. This ensures your wishes are respected in case you're unable to make decisions in the future. This is important, do not put this off.
9. Emotional well-being: Pay attention to your emotional and psychological well-being. Seek counseling or support groups if you're experiencing emotional distress or anxiety related to your cancer diagnosis.
10. Self-care: Prioritize self-care, including maintaining a healthy lifestyle, eat a healthy diet, getting adequate rest, and managing stress. A strong physical and emotional state can better support your cancer treatment.

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Love Your Healthcare Team

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Your Mental Health and Cancer

     Dealing with stress is an inevitable part of life. We cannot escape it. A cancer diagnosis can be one of the biggest stressors a person will face in their lifetime. It throws your otherwise stable world upside down. You are now confronted with an unknown future. What's going to happen to me? Am I going to survive this? Can I manage this? It's a lot to take in. Your mental health state is going to feel a little out of whack, and this is quite normal.

     You will probably experience different levels of anxiety and fear throughout your treatment and survivorship. In 2020, I went through a bit of a down period when I relapsed and started my second treatment for leukemia. The prognostic test I had done indicated my leukemia morphed into a more resistant type with a poorer response rate to the treatments available. I was not expecting that. It was a real downer for me. I was doing all the right things with regard to diet, health, and fitness. It took me a while to digest the news and move forward.

     Even though I see myself as a positive person, I was crushed to hear the news, I was bummed out. Here's the thing.  You can't always stay positive. I resigned myself to recognizing this was going to be one of the speed bumps I had to face. I couldn't run from it or hide from it. It was up to me to just learn to accept this new reality and move on. It was completely normal for me to feel sad about this and I did, I let myself feel sad.... I just needed a bit of time to accept my changing circumstances before I got back to "me being me again".

     So, when I talk about fighting back against cancer, it's really about maintaining your mental health. Your doctors are going to do their thing for your physical health by recommending the appropriate treatment. There is no measuring stick or tool to really assess how you feel mentally or emotionally about what is going on. We are different people.  We all respond to life stressors differently. How do you measure that?  With cancer, you can find yourself dealing with multiple emotional issues at the same time.  Everything from your own mortality issues to relationship issues and everything in-between.

Know When To Seek Help

     If I had any long-term signs of emotional issues, I wouldn't hesitate to seek out professional help. There may be times when everything is overwhelming, and you are not sure which way to turn. These feelings of distress and depression can be a cause for concern. It happens to some of the strongest people I know. Strength in an individual is recognizing you can't be strong all the time. We all become vulnerable from time to time. I have cried more times than I care to share. Afterwards, I come back with a stronger resolve than ever.

     If you get to that point where it is overwhelming, I strongly recommend talking to your doctor or a therapist who has experience with cancer patients. They will be able to assist you in overcoming the issues causing you distress and recommend coping strategies you might not thought of.  A good therapist will know how to guide you out of the mental maze you find yourself stuck in.

     I admire professional athletes, actors and actresses, and other high-profile people when they admit the need to address mental health issues. Just by going public and sharing their situation is highlighting the importance of mental health.  It’s ok to do this.  By doing so, they are actually making it easier for others to seek help. I hope they know this.  If they can do it, so can you. 

     Your mental health is just as important as your physical health and yet we have a tendency to neglect it.  We ignore it, like it doesn’t exist.  Make it a priority.  To say you are vulnerable and then do something about it is admirable in my eyes. This is true strength.  Do the things you once thought you couldn’t.  Good for you! Life isn't easy.

     Living with cancer can be challenging as hell sometimes. Your mental state can fluctuate quite a bit depending on your changing health. We all want to get back to feeling normal again. Maintaining your mental balance during uncertain times is so important. This is why I say we need all the encouragement and support we can get. So, when people ask me, "How am I doing?", my favorite response is, "I'm doing the best I can".

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Surrounded By Cancer Fighters

     I feel like I've been surrounded by Cancer Fighters my entire life. My grandmother passed away from ovarian cancer when I was a little boy. My mother bravely fought breast cancer for 15 years. I have had uncles and aunts who passed away from different cancers such as bone marrow, skin, lung, endometrial, and pancreas cancers.  My Cousin Alan and my best friend Greg, (since kindergarten), both passed from brain cancer. 

     I have other friends who have battled cancer. I remember the challenges some of my coworkers have had and the time off they had to take for exams and treatments, etc.  I hate cancer because too many people I know and loved have suffered. It's just not cancer patients who have felt pain but their immediate families and the anguish they feel as they watch their loved one's struggle with cancer.  So much pain and sorrow.  I have been on both sides of that aisle. Sorry for my rant, but hey, this is how I feel. When you have fond memories of people you grew up with and cancer takes them from you it gets personal. My heart sinks every time I hear of someone I know receiving a cancer diagnosis.

     The thing about cancer is it shows no prejudice. It does not discriminate. It happens to people from all walks of life: professional athletes, movie stars, your next-door neighbor. It's crazy if you think about it. This list could go on and on. Consider this, an estimated 1,806,590 new cases of cancer were diagnosed in 2020.  As of January 2019, there were an estimated 16.9 million cancer survivors in the U.S. alone. That is a lot of people. Let's put this another way: approximately 39.5% of men and women will be diagnosed with cancer at some point in their lifetime. Simple truth is so many of us are affected either directly or indirectly by cancer.

     This is a lot of hurt in the world due to cancer. We need people to step up and say I care. I am one of them. I want to play a small part and infuse hope into the lives of cancer patients. Almost all of my Art Prints are a composite of my memories and interactions with people who have had cancer. I am keenly aware of their daily struggles to maintain balance in their life despite having cancer.

     Each of them had their own coping strategies that worked for them. Some adopted healthier lifestyles, others leaned on their spiritual faith, or their warrior attitude. Many of them have been called superheroes for their strength and fortitude. Others have sought peace in nature. Each and every one of them have found little ways that work to get by.  So many friends and family have inspired me it's crazy.

     I want cancer patients to fight back. Cancer to me is nothing but a big bully that wreaks havoc on your body and goes after your mental psyche.  Do not let this big bully called cancer get the best of you. I know too well how much of a challenge it is to remain steadfast through difficult times.  Some of us may put on a brave face, but inside we have our share of fears.  Dealing with cancer sometimes does that, making our normally strong mental psyche seem fragile as hell.

     God knows I've had my share of challenges due to life stressors caused by cancer.  Some of which recently caused me a bit of delay in moving forward after launching this website.  There will be times you need to take a step back and regroup and refocus like I did.  Not everyone can be strong and positive all the time.  Remember this...allowing yourself to be vulnerable is a sign of strength, not weakness.  

     The good news is there are ways to limit the impact of how these life stressors affect our daily lives.  In the days ahead I plan on writing about issues that affect cancer patients and tips to make your life a bit easier, more manageable.

     We cancer patients need every edge we can get. I hope you are able to use these Art Prints or other gear at Fight Cancer Gifts as your inspiration to maintain a positive vibe during difficult times.  Sometimes we just need a little nudge in the right direction to keep us motivated and on track to do the things we need to do.

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I have what? Say that again!

     Aaah, those words I said will always be etched into my memory. Here I was, a 51-year-old guy living a healthy lifestyle. I felt great, I practiced yoga, and I loved to hike the local trails. I had a new girlfriend and I felt Iike I was on top of my little world. My name is Rick Praefke and my Small Lymphocytic Lymphoma (leukemia) cancer diagnosis in March 2012 changed everything in my life in an instant.

A New World

     Since then, I have been pricked, poked, and stabbed by more needles than I can count. A blood cancer is nothing but needle pokes.  Bone marrow biopsies are the worst. Some people don't mind them, I do. The first time I saw the size of THAT needle I wanted to run. I'm a little guy, 155lbs on a good day and you want to stick me with that? I was told to grip the bars on the side of the bed for support, huh? I'll never forget the burly nurse grunting as she tried to penetrate my pelvic bone, all the while commenting to me about how hard my bones are, right.  A wonderful start to my new world.

     Leukemia is known to weaken and wreak havoc with your immune system. I found out quickly. A few weeks later, I had a nasty outbreak of shingles causing me to miss almost a month of work. One of my worst experiences--EVER! I had patches of shingles on my back and forearm and around my fingers. I couldn't even pick up a toothbrush. The burning pain from shingles is nonstop and simply awful.

     Again, due to low immunity, I contracted an auto-immune disease, (AIHA) Autoimmune hemolytic anemia. My body’s immune system was attacking and destroying my red blood cells faster than my body could produce. For four weeks I had to go to the hospital for a blood infusion. To combat this, my doctor put me on a very high dose of prednisone-80mg daily, a steroid. The side effects were nasty. 

     While on this, my heartrate increased dramatically. I thought my heart was going to jump out of my chest. It was a terrible feeling. Other side effects included insomnia and when I did doze off, I had nightmares. I was on this for a month until I took a turn for the worse.

     I woke up and thought I had the flu when my temperature soared to 104 degrees. I was very weak and wobbly. I could not walk a flight of stairs without assistance. They immediately put me in our local small-town hospital, and I was diagnosed with pneumonia....wonderful. After one day, with my health declining the doctor told me we can't do anything more for you here. You need to go to a better-equipped hospital. As a patient, these are not the words you want to hear. I was scared wondering if this is how I was going to die. I was promptly transported high speed by ambulance hooked up with an oxygen mask and seven IV's.

     I was in Intensive Care for a week supervised by a team of doctors with different specialties. I was in bad shape. My doctors started me on treatment for my leukemia earlier than I would have preferred because one of the chemo drugs he gave me (Rituximab) was also proven effective at stopping the auto-immune disease. Kind of like hitting two birds with one stone.

     Contrary to most cancers, doctors do not start cancer treatment for my type of leukemia right away. In fact, you delay treatment until your white blood cells get high enough or your symptoms start to become bothersome. I was on what they call a "watch and wait" period or as we joke in my leukemia support group, a "watch and worry" period.

     Fortunately for me, the chemo and drugs finally started to work, and the auto-immune disease went away, but then I developed neutropenia from chemo. This is where you have dangerously low neutrophils, a type of white blood cell which fights common invaders in your body.  If they are low in number, it increases your susceptibility to infection. I needed to take Neulasta, a drug for bone marrow supplementation.  It pretty much knocked the crap out of me.

     The Neulasta treatment to stimulate my body to produce neutrophils was not kind to me. Every bone in my body ached beyond words. From the top of my head to my toes, where there was bone it hurt, really bad.  It was like the aftereffects of getting hit head-on by a semi.  They don't prescribe pain medication for this because it isn't effective. I just had to ride it out for a couple of miserable days.  Unfortunately, I have had several of those treatments.

     Early 2020, I was relapsing and started a new treatment plan. Due to a very high white blood cell count I had a severe reaction to the treatment and experienced a tumor lysis syndrome. This is a condition where your cancer cells die quicker than your body can process disposing of them. My blood pressure dropped rapidly, and my heartrate went below 30. I started to lose consciousness and the nurses quickly called the STAT team. I was able to recover and an hour later I restarted treatment.....WARRIOR!

     I've had many other "mini-battles" with leukemia I don't talk much about including fatigue-anemia (love my coffee), easy bruising-low platelets (so damn fragile), and slower recovery from illnesses.  Sometimes the wear and tear of daily struggles do get the best of you.  All you can do is...just know you're doing the best you can.

     What a lot of people don't get is when they look at you and think you are doing really good....they just have no idea what's going on under the hood or the mental challenges that go with your new reality.

     So yeah, I have had my share of cancer-related battles over the last few years. There were times I found myself scared, depressed, and beaten down. Life doesn't stop just because you have cancer. It just makes life a whole lot more complicated. While undergoing treatment, I also had to deal with the emotional pain of a broken heart when my girlfriend left me. This sometimes hurt more than dealing with cancer. I was at my lowest during this time. My life just really sucked! I wanted to give up. I was very mentally and emotionally drained.

     Everything I worked for and desired was disappearing before my eyes. My finances were depleted. My significant relationship disappeared. I felt like I was getting sucked into this big swirling black hole with no way out. This seemingly lack of control of my life was frustrating and depressing. It took me quite a while to recover from the punch's life was throwing my way. I was tired of taking a beating.

     Some of the biggest battles we fight with cancer are inside our heads, it's not the cancer itself. I found it a challenge to stay positive. You may be good for one or two days then down for a couple more. I wanted to get off this emotional roller coaster ride, but this was starting to become my new normal. During this time, I could not get enough inspiration or encouragement. I needed to hear or see encouraging signs I was going to be all right, that I could get thru this.

     I was drawn towards inspirational words and slogans about hanging in there and surviving cancer. I was looking for an Art Print with a visual impact I could use to encourage myself. I didn't find anything that appealed to me, so I decided to create one from scratch. I loved it! I made several more and strategically placed them around my home and office. I even put one on my kitchen wall before I walk out the door. The positive impact they had on me was immeasurable. My Art Prints became the catalyst I needed to regain my mental and emotional strength.

     I have found these Art Prints to be powerful affirmations and a reflection back to me to fight back, to not give up, despite what life is throwing at me. They are colorful, bold, and definitely defiant. I can relate to that. I look at them as testimonials of the personal battles we face as cancer fighters and the battles yet to come. Not a day goes by where I don't glance at them for inspiration. We cancer fighters need all the encouragement and back-slapping we can get. Your friends and loved ones can only give you so much support. The rest has to come from you.

     I love the positive looks on people's faces when they have been received as gifts. I consider them to be a powerful tool in my cancer-fighting arsenal. Cancer is a war on our bodies, and we are in this fight to win, period.

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