The Passenger Log
Stardate 27 January 2022
It is not often one is able to celebrate an un-birthday… well, I suppose 364 days a year one could but… that may be a bit too ‘Alice in Wonderland’ for most. Yet, today, I shall choose to celebrate my half birthday plus one month. My ‘half-birthday’ is February 27th which will put me at 64 and a half. My invitations to different Medicare plus insurances are piling up on the table. However, if I were to take a cue from Alice I think my first invitee to such an un-birthday party would have to be the Cheshire Cat. Though I’m not a ‘cat person’ ol’ CC has a unique way at looking at life and I like it! Can you stand on your head?
At my real ‘half-birthday it will be just about 1 year since the doctors told me that in most cases, I would have 3 to 5 years to live with my disease of IPF. So, here we are, a year later. If my Modern Math skills are accurate, that would bring me down to 2 to 4 years. But what do doctors know?
Living with these changes brings an acute awareness of other changes. For example, today I retrieved the mail from the box at the street. A task I have performed hundreds upon hundreds of times but this time I noticed something. Fifteen years ago or even five years ago, I would get mail with information on trends in international terrorism or the most innovative new products for law enforcement. Some of those writing me even wanted my opinion. Today, however, I got an envelope with a medicine refill in it and an update of information from the Idiopathic Pulmonary Fibrosis Foundation. Both, highly important pieces of mail but to quote Morgan Freeman in RED (Retired Extremely Dangerous), “I never thought this would happen to me… Getting’ old.”
That obviously isn’t completely true, we all know it is going to happen to us but we just never really expect it. For some reason we are surprised by it! Some just choose to refuse delivery on aging and demand of themselves to continue on as if they were half their age. Sometimes it works. Most times, the brain says “YES!” while the body says, “YOU’VE GOT TO BE KIDDING!”
Passenger Log – UPDATE
The past weeks, even to today, have been full of tests, scans, blood work, and an MRI while still waiting on word from Universities Hospital. The Starship Genesis Two-Seven is spending more time than usual docked over hospitals and medical facilities. So much more inspiring is the view from a constellation or from the edge of an asteroid belt staring toward a luminescent somewhere in the universe. Of course, as The Passenger these views are restricted to what a professor in seminary referred to as our ‘sanctified imagination’ but the view within the halls of medical facilities can be at times both inspiring and heart wrenching. I’ve met both in these past weeks, some within the same little child. I continue to seek to live with the adage, “Wherever I’m at, I’ll be there.” I take inspiration from some of these young patients I meet and I quietly pray for them and their caregivers.
Where am I at as far as the progress of the disease? That is a hard question to answer and I won’t be seeing Dr. N until after I see one of two specialists at UH. A key question that they are trying to answer is whether my disease is advanced enough to warrant stepping away from the steroids and picking up one of two quasi-experimental drugs that are believed to slow the progression of IPF. Both drugs require I take them for the rest of my life, I cannot come off them once there. Both are extremely expensive. Both have side-effects, as most drugs do but these are pretty consistent though the two are totally opposite in polarity as to what their effects are. I’ll leave it at, neither are fun.
My oxygen level for my machines is increased slightly and now I use my portable one much more than I used to. I used to just have to use the O2 at night but it is most of the time through the day and night now. I get tired more easily but my spirits are good and I am focused on an up-coming vacation Karin and I have on our bucket list for April, a long planned cruise in Hawaii. I’m also focusing on having a special trip with Aaron this year and working on something for Allyson in the not-too-distant future. Many things still on the bucket list and faster than I am ticking them off the list I am adding others to it! There is much life still yet to live and I trust that God will help me see how He wants me to live it!
Prayer Requests – Please continue to uplift my family. They are the ones who are in a no-win situation. Even though they have the hope of heaven and being together again someday, still now they are faced with – seeing Dad/Papaw declining and not seeing Dad/Papaw. Not two great choices but we will not worry so much about the declining part and just keep on living.
My biggest, most gigantic prayer request is to please pray for my family’s peace and pray that each one of them are where they need to be when I can no longer be.
Until our next Voyage Passenger Update (VPU) I remain,