Keep Holding On - Ideas and Suggestions from Ema

I've been thinking of what I wish I had when I was first diagnosed with this disease. I felt like I was flailing around, terrified and alone. So I thought I would make a list of my ideas and suggestions for the newly diagnosed. These are things that I read about or - surprise – thought of myself, that have helped me through this journey. I will keep adding to this list and blog them for you every week or so.

Here are some of the things that have helped me…

*** Keep in mind that THIS is probably the MOST terrifying time right now. You've just been handed life-altering news and while you know it's bad you don't know how bad. Most likely the doctors are giving you vague ideas about general scenarios but no one will commit to any big decisions because they just don't know yet. You will need a lot more procedures like MRIs, CT scans, biopsies, etc. to pin down your diagnosis and then to make a plan of attack. Realize that it is easy for your mind to go down the darkest road because you don't know what is truly in front of you. Try to keep off that road as much as you can. Yes, you do need to prepare yourself for some difficult times but you will accomplish nothing by scaring the heck out of yourself.

*** Schedule some worry time into your day. Tell yourself that at 10am (or whatever time you can have a quiet moment) you will sit down and for 20 minutes you will worry about everything that could possibly happen. You can list it out and go over it with your doctor at your next appointment. Sometimes my worrying did bring up some important issues that needed to be addressed. But by limiting myself to this scheduled "worry time" I was forced not to obsess over it, all the time. When I found myself worrying at another time, I made myself shove it to the back of my mind until the next "worry time". The worst time to worry is at bedtime. You are tired and vulnerable then. You need to think about the scary things when you are feeling strong and ready to kick some butt. Jai Pausch said that it helped her just to say "not helpful" to herself when she found herself thinking the bad thoughts late at night. You have control over so few things in this process but fortunately you do have control over the MOST important thing; your own thoughts.

*** Ask your doctor for an anti-anxiety medicine. I had ativan. I didn't take it very often but it was good to know I had it if I was really getting freaked out. This is a very scary time. Don't be afraid of a little help now and then.

*** Start a recovery binder. Get a business card from every doctor and facility you visit and keep them in the binder. Make a log of every scan and procedure; it's easy to get confused after you've had a dozen scans and forget which was done on what part of the body and at what facility. Keep a calendar and copies of your reports in here. This binder is great in a few ways: being organized is empowering in an otherwise chaotic time and there is no one who is more interested in your care than you. You are important to your doctor but you are one of his many patients. You are YOUR only patient. You need to keep on top of your care and this will help you do it. Take this binder with you to your doctor appointments. Not only will you often need to refer to the binder when speaking with your doctor, but your doctor will see that you are serious about keeping organized and this impression may prove important to the overall climate of care you receive.

These are just some ideas and suggestions. Feel free to take 'em or leave 'em. I'll have more next week. I do hope that they help you through these tough times. Remember courage is just holding on a moment longer. Keep holding on....

~Ema