How many of you are absolutely sick of this lead-in teaser, or some similar variation, that has totally infiltrated Facebook? And how many of you often click anyway? How can you not, right? Some of them are just too good to pass up, whether it is some cutesy dog video or an impossible science experiment. Plus I often look to see who has posted it to determine if I respect their judgement in posting.
But what does this have to do with this, my 100th blog posting, you ask? Well, this phrase could have been said to me on the day of my diagnosis almost two years ago. No, I had no idea what I, and my family and friends, were in for. So if I could go back in time and prep myself for this journey, kinda like one of the Terminator movies, here is what I would tell me. Minus the “I’ll be Baack” Arnold impressions.
- Be ready for the roller coaster ride of your life. Magic Mountain (a Six Flags amusement park) has nothing on this journey. OK, the Superman Escape from Krypton ride might come close.
- Plan on becoming a pincushion extraordinaire. Getting poked, re-poked, and poked again will become second nature. And third, and fourth. Good thing your body replenishes your blood. Otherwise I would have turned into a prune long ago.
- Don’t assume your docs know everything. Whether it is your onc-doc, lung-onc-doc, pulmon-doc, or a radio-doc, they cannot stay on top of everything. Be your own advocate and grow some big ones. Do not hesitate to call your doc out if you disagree with a treatment plan. You gotta stand up. Nobody knows you better than you. In more than one instance I was prescribed treatments that would have conflicted with other treatments I was undergoing. If I hadn’t said something, well, let’s not go there.
- Insist on having them test for mutations in your tumor(s). I had no idea what that meant. When my pulmon-doc called to give me the bad news about my diagnosis, I failed to understand how important the news was that I was EGFR positive. And later on my T790 positive test.
- Stay ahead of the curve. This means immediately bringing Google to its knees with your research. Find some good lung cancer survivor groups in a place like Inspire.com and chat away. You will learn a ton in a short period of time. Just avoid statistics. I know that will be impossible at first but they are always several years out of date and are essentially meaningless. With the exponential growth in genomic testing and specialized treatments, nobody can predict where you will be in one, two or even ten years from now.
- Go public immediately. Or as soon as you have recovered from the initial beat down. The more people know what is going on with you, the sooner the positive thoughts and prayers can help you with your mental outlook. And I’m a firm believer in a positive frame of mind helping the physical healing process. Getting the word out quickly will also help prevent those awkward moments where you run into someone at the store and they ask how you are doing. Do they know you have cancer or are they just being polite? Yes, you will get some off-the-wall treatment recommendations from some well meaning friends, but you will also get articles and links to publications about upcoming treatment options you did not know about. Just be bold.
- Start a blog. It’s a great way to get out what is going on with you and keeping family and friends informed. They are anxious to know what’s happening but feel like they’d be bugging you by calling. And you’ll never know when someone else gets some side benefits of your personal experience in their own journey.
- Be sure your caregivers get some attention. I have not been very good at that aspect. They are often having just as tough of a time as you, maybe even more so since they do not feel they can let down their guard. If you go into a momentary hole, it’s easily forgiven. If they do, they feel like they are letting you down.
- Be ready for side effects up the wazoo. Or maybe out the wazoo. Oops, TMI. Sorry. Yes, it’s mostly all small stuff in the ultimate scheme of things, at least in my case to date, but stay in touch with others that have gone through that treatment to get an idea of what you are in for.
- Be wary of leg pain/swelling. I was never told, or at least I did not remember, that lung cancer patients have a much higher risk of developing deep vein thrombosis (DVT’s) in their legs. These blood clots can then break off and travel north into your lung and cause some very serious issues. Had I been aware (or remembered) this was a possibility, I might have gotten in sooner when I began experiencing leg pain and might have avoided the pulmonary embolisms (PE’s) I suffered as a result. Be always listening to your body.
- Don’t cut back on normal activities if you can avoid it. I found the more I maintained my regular day-to-day activities, the more I was able to handle what got thrown at me.
- Get ready for a new normal. And a normal that gets redefined continuously throughout your journey. It is what it is. Do not look back or try and zip directly to “go” and collect $200. Day at a time as you all know.
OK, that’s a quick dozen of things I wish I had known earlier on. Some of which I jumped on right away such as going public and starting a blog. But other stuff I learned as I went. And that’s a bit tougher road to travel.
As you know, I am approaching my two-year anniversary of my diagnosis. I will be celebrating on lucky Friday the 13th. In honor of that momentous occasion, I am throwing a virtual party and would like all of you to join me. And your friends. And your friends’ friends. Really all it means that you are “attending” my party by electronic proxy. Some of you have already signed up via my earlier Facebook post. So click here to join the fun. Click on “going” and then invite all of your friends. All it means is that you are supporting me at my two-year mark. Nothing to do other than that. You don’t have to be anywhere at a set time or anything. I’d love to see this number get up to 500 but it will take a lot of inviting/sharing to make that happen.
But I am going to offer an additional option for those of you that are looking for perhaps an even deeper involvement. I will be on that web page at 7pm (PST) on Friday the 13th monitoring and responding to any comments. I think it would also be very cool to post pictures of you toasting to the celebration. I will start it off with my own picture that morning. Whatdaya think? Here is a picture of a glass (one of two) that some good friends gave me. They made a special trip to the Rombauer winery to pick these up. How cool is that?
I just started my own Twitter account. I could use some lessons from those of you that have been tweeting a while. But if you want quicker updates on where I stand, you can follow me @Getfuzzies.
Last but not least, I go in this Thursday morning for my six-week double-your-trouble twin scans (brain MRI and CT scan). If you follow me on Twitter, I may have the results out by Friday, even tho I am taking the day off. My wife and I are joining my brother and his wife at Rancho Bernardo Inn. So probably the most I would be able to get out would be less than 140 characters anyway. Probably similar to what my golf score will be. Hopefully I’ll be getting a nice birthday present.
Business as usual. Day at a time.