I think that step one, as with any issue in life is square with your faith. What do you believe, and how do you intend to run with that? For Kelly and I, our Christian faith in Jesus was a guiding light for decision making, attitude, mental health, and ultimately physical health. I walk 12 months cancer free today, thanks to God.
Some things to think about as you enter into life's medical industry tornado, when you are told that they found something of concern...
- Run to your church and tap deeply into your faith. If you are not a person of faith, you will have to use whatever your method is, but do not forget the mental and spiritual side of this battle. It is also critical.
- Urgency - Develop a "right now mentality" about your medical care. No, it can not wait. Yes, you need the very best medical attention you can get, right now. Do not allow you mind to wander and accept delays and assumptions. Use your connections with people in the medical industry. They can help you immensely. Be politely persistent, always, but make sure you get what you need.
- Get an advocate. Someone that is going to be there every step of the way, with you, that will fight for you, with great urgency. Kelly was mine and she did a great job. She was/is still at every appointment, she kept "the book" which was a giant binder of every report, scan, appointment, notes, etc and she could put her fingers on data in seconds. This is critical as you develop a panel of doctors that are going to be hamstrung by the medical systems that do not talk to each other well. The result of not having this is potentially very costly delays which could be a factor in your fight.
- Bureaucracy - Insurance and medical paperwork processing are going to bog you down. To get to the best medical help now, you are going to need to follow every transmission of data up. For example, our introduction to this was when we were trying to get some results from radiology over to my GP. Radiology had transmitted it, but what that means is they sent it to a big pile at the doctor's office. Kelly had to find out what their process was and follow it all the way to the GP. The way it works is, they "FAX" which is actually more like email, to a server. From there someone who is likely an underpaid over worked clerk then had to send it to my doctors group within their practice. From there another clerk picks it up and puts it in my doctor's pile. From there he has to free up 2 minutes in his busy schedule to look at it. Without follow up all the way through you can imagine the amount of delay this will cause. With regard to insurance, find the people who admin your policy at work, or wherever, and make friends right now with them. You are going to need them. Big insurance company's mission is to take money in and not pay it out. That is what makes them profitable. They often have many layers of people and processes just like the medical information systems. Being able to quickly traverse bureaucracy will help get things approved faster, and create a lot less stress for you.
- Find people who have been through this and ask them about what they did and what they ran into. Their experience may save you precious time and help you get organized.
- You should be working toward finding a specialist. Your GP or whoever found the issue has likely referred you to someone. Do your homework and make sure this doctor is experienced, does good work, and will be a good advocate for you. You can ask for more options if you need to. I was very fortunate to have Kelly in the imaging field. She got me in with Dr. Dhawan who is an outstanding pulmonologist. He was direct with information, had an urgent position, had plenty of experience, and provided outstanding medical care. I still owe this guy a beer! He was great. From there plan on seeing more people. Our guy was part of a group here locally which included different types of specialists that could provide care and do surgery. I went from Xray, and look there is a problem in your lung, to pulmonology, to CT Scan, to biopsy, to PET scan, to surgery to remove the lung, to pathology in the OR which stopped the surgery due to new cancer being found, to U of Texas MD Anderson in Houston, to more tests and scans, to open chest surgery where they got what we thought was a benign tumor out and found Lymphoma.
- Oncology - there are many different types of oncology out there so, if you do have a cancer case, you will want to find one early. They are overloaded with patients and you will not want to wait to get in. Hitting this early on is wise since while you are progressing through your medical processes, if you already have an oncologist lined up, you should be able to eliminate delays. We wanted someone with a can-do attitude and someone that did not say "never." Dr Lee has been outstanding in every step of the process. I could not be more thankful to have landed with him. Another guy told me there was nothing they could do and left me there. He got "fired by us" 15 minutes into the conversation. :-)
- Diet - Do your homework. Personally, I decided to eliminate sugar. This is highly disputed in the oncology field since the FDA says that sugar has no effect on cancer. Ironically, when they do a PET scan they intravenously give you a radioactive sugar solution, since sugar excites the cancer cells, and then scan you. I will debate the FDA on this one until the day I die. Point being, be in control and make your choices based upon your information gathering and not blindly following someone else. Ask a lot of questions, get informed, and make good decisions.
- Chemo and diet - Drink a ton of water. Chemo will knock it out of you. Get some prune juice and fiber as well. You will need this while doing your chemo cycles. Eat a lot of smaller meals and go easy on your stomach.
- Nuelasta - The miracle drug. Neulasta gives your bone marrow a kick in the pants to produce a ton of white blood cells post chemo, since they are going to be basically gone. You will probably experience pain in your hips and legs since these bones are the big producers. That will die down with more cycles of Neulasta. I slept on the carpeted floor a few nights.in the beginning, after the shot. The firm floor seemed to help. They say taking Claritin-D helps. I did it, it still hurt, but I think they were probably right in that it did not hurt as much.
- Track your numbers. You are going to get a lot of blood work done if you wind up in chemo. Track the data. It is important. Specifically, I chose to track the majors which were red and white blood cells, platelets, Neutrophil, and hemoglobin. I also wore a fit bit which tracked my heart rate (can show dehydration tendencies), steps, and sleep. I also weighed in daily. Last but not least I tracked symptoms. See my spreadsheet. You will need to adjust to suit your needs with cycles, length of cycles, etc. The important thing is establish trends so that when funky stuff happens you can reflect back on your history.
- The oncology office. Be a bright light in there with a positive attitude. You will be an inspiration and help so many people just by smiling and listening to them. Many come in very down. Even if you are, if you make the effort to smile and listen, both you and the person you are speaking with are going to benefit from the positive attitude you bring.
Have a blessed day, keep up the fight, and remember Isaiah 40:31
