Step 2 – Gobbledygook

Okay, so you’ve been to the doctor, and have a diagnosis of a life changing/life threatening/terminal illness. Cancer, leukemia, heart disease, MS, lupus, ALS, rheumatoid arthritis, diabetes, lymphedema, pretty much anything that is going to require an adjustment to your daily living. Some of these can be huge – some just tiny, like remembering to take a pill every morning. Whatever the reason, we as human beings have this strange inner switch. We hear “you have cancer (or whatever)”. The doctor goes on to explain what this means, what medicines he is going to prescribe, what course of treatment will be used, or that he is referring you to a different doctor. What you hear is “You have cancer {blah blah blah, garble garble garble, yak yak yak, yadda yadda yadda} Do you have any questions?” Your astounded, blown away self says no, and goes home or back to work. You slog through the rest of your day. Depending on the type of person you are, you either internalize the whole thing, thinking people will run from you if they know, or you tell everyone you see – even the stranger in the grocery store. You may have a reaction somewhere in between these two extremes. Just like your illness, each of us is unique, and our reactions are as well. Either way, you get home, you eat supper (and no one better ask you what you are eating, because your brain is a stuck record, going at full volume “I have cancer, I have cancer, I have cancer”) and while you may make appropriate responses, you are not hearing a word said to you. You brain is breaking speed records, though. Suddenly, it happens. Your brain shuts up. With a jolt, you are once again in the here and now, but you are confused. The last thing you really clearly remember is at the doctor – oh, yeah, that’s what it is, you have cancer (or other disease). So now you start trying to replay that tape in your head of the doctors words after “cancer”, but the tape is stretched and damaged. Most of what was said is a foreign language. Chemotherapy? Radiation? Surgeon? Infusions? Medications? Treatments? PET Scans? MRI’s? Biopsy? – your brain screams HUH???????? Keep in mind, all this is rattling through your brain at breakneck speed while you are attempting to outwardly appear normal. Like nothing has changed. The fact that every single person who knows you that you have run into has asked you what is wrong is a clue!!!!! The shock is stamped on you like a neon sign! But, you cannot register this fact, because now your brain is on chorus two – shutting off any chance of any thought process yet again.

So, as you sit in your living room, watching television with the family, your brain shuts up on chorus two, and shouts the question of the century – WHAT DO I DO NOW? In this day and age, most likely you head to the internet. Because once the shock wears off, you want to know what the devil it is you have, what caused it, and most importantly how to fix it. You pull out those papers the doctor’s office sent you home with, and you line up the prescription bottles and their information sheets. You come to a screaming, screeching halt. Full stop. Because you are looking at a mountain of information that might as well be written in Cantonese for all the good it’s doing you. You come to the instant realization that this is not a simple sinus infection. Here is where the 8-lane highway comes in. You can go in multiple directions from here. You can dissect the information, breaking it down in workable parts, and spend days hunched over the computer screen, you can go into “poor me” mode, deciding that there is nothing you can do so you are going to do just that. You can go into denial – the doctor is wrong, the tests are wrong, you are right as rain, it was just a fluke, you are fine! You can become angry at the body that you have cared for all these 20, 25, 30, 35, 40, 45, 50 or more years that is abdicating its responsibility to you. You can be furious at whatever higher power you believe in for allowing you to get sick. You can even be mad at yourself. You can be sad. You can be confused. You can be all of the above at the same exact time! You can be a multitude of other things – simultaneously. My advice – DO NOTHING!!!! Make notes. But for the first 24 to 48 hours, make no major, life changing decisions. Why? Because, your thinking is altered. You are not thinking clearly. You are like the man who has had 5 beers in 45 minutes who thinks he is not impaired. Personally, I think that all people who are told that they have life altering illnesses should be scheduled for a visit back with their doctor in 48 to 72 hours. Why? Because it takes that long for the thought processes to even remotely begin to return to normal. Think about it this way. I walk up to you and tell you I am going to give you an all expense paid trip to the destination of your choice, for two weeks. Only catch, you have to leave in thirty minutes. Period. Time starts NOW. Stop and think about everything you have in the next two weeks. Work, school, family commitments, appointments, meetings. You have to reschedule everything in thirty minutes in order to take advantage of this wonderful gift. Turn it around – you have just been told that from this day forward, you will have a new “tag” on you. You will be a cancer, lupus, ALS, diabetes, arthritis, leukemia, fibromyalgia, – whatever illness you have, put here – patient. Not just for the next 10 days while the antibiotics work – for the rest of your life. For however many days you continue to breathe in and breathe out. Even if you are one of the fortunate ones who eradicate the disease – you will always be one who has had that illness. If you live 40 more years, your obituary will include the sentence “survived {insert illness here} 40 years ago”. From the second that word exits your doctors mouth, it is part of you. Which brings me back to making no major decisions in the first 72 hours. Let the idea “absorb” if you will. There used to be a joke floating around about the man who had to file bankruptcy on his maxed out credit cards, and the reason was “I thought I was dying”. Turns out the doctor had given him the wrong test results, and so this man, thinking he had only days to live, went out and bought cars, maxed out every credit card he had – thinking he was going to die and so what-the-hell, only to find out that the test was actually someone else’s. Silly, yes. Possible, remotely – after all you must remember doctors, nurses and lab technicians are also humans, and as such are capable of error. But the whole point being that a diagnosis of a major illness is life changing – no matter what the illness. Take a couple of days to process it. Your whole world is about to tilt on a 45 degree angle, and you will have to incorporate your new “part” into your life. Please notice the way that is worded. Your life has changed – no doubt. This does not mean you have to lie down and passively let your disease rule the roost! I have seen this multiple times in my life. A doctor tells someone they have cancer, lupus, heart disease, arthritis, WHATEVER, and they immediately lie down and play dead. You know what I mean. That broken record “I am going to die” is at full volume in their head and they are so busy obsessing about it that they forget to live! My doctor put it to me very simply, “I would rather see you LIVE, than just see that you are still alive.” Wow – woke my lazy butt up for sure. Because I was just existing. I was so busy HAVING arthritis, HAVING back pain, that they were driving the cart. NO MORE! Now they trail behind me, holding on around the curves. There are days when they fight their way to the front. But with a little help from medication, and my stubbornness, I shove their ugly mugs back in the back and strap them down again! Point being – no matter the disease – YOU CAN TOO! It is part of you – it does not have to define you. You will most likely have to adjust. Medications can be nasty little buggers, and cause disgusting side effects. But you can learn to live with that. You may even have to spend a day in bed, recovering. In case of surgery, maybe longer. But as much as possible, make your illness coexist with you, not the other way around!

I know, you are wondering about the title I chose for this blog. Gobbledygook. Well, that’s exactly what you hear that first day. After the sentence declaring you life is now changing, the rest is another language, from another planet even. Gobbledygook. It makes no sense. So, take a deep breath. Start writing down your questions. Cry. Laugh. Love. Live. Most importantly, learn to decipher the Gobbledygook, and be your own best advocate as much as you can. I have said this before, and I will say it over and over again – the only stupid question is the one you don’t ask. Whenever I get sent to a new doctor, I warn them that I will ask questions. I also tell them that if they are unwilling to answer my questions, will they please refer me to a doctor in their field who will. Blunt – yes. But its MY body, MY pain, MY LIFE. I should not have to compromise my quality of life over someone being too “busy” to tell me whether or not I should walk every day (yes, I went through that one for 5 years – didn’t go walking cause I didn’t think I could).

My goal in all this is to create more awareness, to banish some myths, and to put the word out there that these diseases and conditions are not the happy fishing trips the television commercials make them out to be. In many instances they are deadly. In most instances, they are frightening. In all instances, they are made more difficult to live with by ignorance.

I hope you have enjoyed my little “trip”, and maybe have even gotten something out of it. If you feel so inclined, please share and get the awareness out there. Thank you for your time.

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This entry was posted in awareness, cancer, death, diabetes, disability, humor, illness, life, lupus, major illness, malignant neoplastic disease, medical supplies, Uncategorized and tagged , , , , , , , , , . Bookmark the permalink.

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