Image above is Sam in the hospital, University Hospitals in Cleveland, being visited by Seth Devalve and Joe Schobert of the Cleveland Browns.
I started my CANCER “journey” in July of 2017 and I never thought CANCER could happen to me. It has been a long and rough ride, but I think I am starting to see the smoother part. There will never be a time that you are not going through the “journey” as CANCER has life long issues. Although as an Oncology patient there will always be fear that CANCER will come back, but you try to get through the rest of your life as best as you can.
One of the problems that I faced and continually face is the dreaded chemo brain. People who haven’t had chemo think there is no such thing. Scientist say there is little to no change in the chemical make up after chemo, but you and I both know that its real. You feel like Ariel and you can’t remember the name of fire but remembers that it burns. Now, it’s not a drastic change like one day you don’t remember anything. It’s a gradual forgetting what the fridge is called but describing (ex: it keeps the food cold and freezes ice). It is also forgetting what doctor’s names are, what they look like, your prescriptions, even what has happened in the last few days, weeks or months. It’s not as bad as it seems but you probably will have to remind yourself of a few things as the days go on. There will be some days where you wake up and for a few seconds you think about your old life; but then reality sets in and you remember what your life is like now. I like those moments; they keep me grounded to what is important.
I found out there are people who care about you and those who just want to make themselves feel better. The distinction between the two is the people who care about you, spend time with you and those who will avoid you when you are sick. Your emotional health is just as important as your physical health. Your emotions can manifest in physical symptoms. If you are upset or anxious about a test you might be more nauseous than usual (there isn’t a time that you are not nauseous). If you are bottling in your emotions all the time you could get body pains, headaches, or you could get angry at the wrong person. If you feel like crap tell someone, trust me you aren’t alone in your fight or in your life. Always remember it is OK to feel weak and have bad days, but you make the choice every day when you wake up how you day is going to go. You can feel bad about having CANCER or you can say to yourself, out loud or not, that CANCER isn’t going to take you out.
One of the biggest helps was talking to a social worker and getting Social Security and help paying some of my bills because I couldn’t work for almost an entire year. My social worker and I were able to fill out a few documents and they were able to help me get on Medicaid and social security. If my social worker couldn’t help me with any of the financial issues I would be in debt of $500,000, at the very least, for lifesaving medicine and treatment. I lost my job and my insurance there was no way to support myself. Luckily there are a few foundations out in the world that help cancer patients pay some bills for a bit, because we as patients didn’t try to get CANCER, it just happens.
The biggest thing that I can give to people is be your own advocate. If you think there is something wrong, then say and fight your medical team to make sure the proper tests are done. If you don’t like a specific doctor, nurse, or transport person, you can tell them to not come back or you don’t want them treating you. You have rights as patients. If you want to order food from the children’s menu or have Chinese delivered, you have the right to eat what you want (unless it’s for a medical reason ex: surgery, transplant, or food restriction). If you want to sit in the dark in your room and avoid all contact with people you can do that too. No one can force you to do what you don’t feel like doing.