Control-Alt-Delete
It’s been a while....
I had, and still have good intentions to be more regular in my blogs and articles, although that game plan and others have been altered a little in the past several months.
In January of this year, approximately 11 months out from my BMT, I was feeling pretty good, which I know is relative, and directly related to the number of red and white cells left over as my Revlimid does its work, which I found out today isn’t much. We just decided to go off of it because it was causing so many immune issues and severe cramping. Not sure what’s next…
Control-Alt Delete…. Reboot
Now face north, think about direction
I’ve always been a “move forward” type of guy, and decided in January that I better make hay while the sun shined. The first thing I did was schedule going to a Metallica concert with my son. It was glorious getting out into life again! I did all the right things with constant hand washing, wearing a face mask with proper filtration, etc., and came through the experience in great shape. What a confidence builder! I was ready to do more!
The following month, I had a chest cold. It slowed me down a little, but I was still able to bounce back fairly quickly. My confidence continued to build. Evidently, it was around that time I must have either started getting a little too cocky, or simply lost my mind; but the sun seemed to still be shining, and I was still planning on making a lot more hay. In fact, I was ready for a bumper crop. Unfortunately, I was also totally ignoring the storm clouds looming on the horizon.
Mass hysteria
In the following four weeks, vacation trips and time away for different activities were scheduled to Florida, Oklahoma City, Emerald Isle in NC, Louisville for Kentucky Derby, Charlottesville, Pittsburgh, and Emerald Isle again. These trips were all going to happen by the second week of June. Concerts were also scheduled to see Chicago, Heart, and Queen.
I then went totally insane (along with my wife), and scheduled a mid-July trip to Utah for the Myeloma Crowd Coaching Conference, adding a week to see family; and finally, planned the coup de grace of a 14 day trip to Europe to see my son in Denmark, as well as my family’s homeland of Croatia. This was put on the agenda for early September. It was mass hysteria in the Padjen household.
If my schedule were a plate of food, you’d be able to say what my mom always said; that “my eyes were bigger than my stomach.” I was not just making up for lost time, but also acting as though I had no time.
Hey, this ain’t so bad…what?
Things went great through April. I did notice though, a slight downward trend in my white count from low threes to high twos. Then the Oklahoma City trip hit in late April, where upon my return, I had pneumonia; caused by a common virus that people with normal immune systems usually don’t know they have. So much for the Kentucky Derby.
Control-Alt Delete.... Reboot
One week in the hospital basically eliminated 80% of my post January improvement, so I did what a good warrior does, and started all over again. I missed the Derby trip, but made Emerald Isle and Pittsburgh. After that, I concentrated hard on my leg, heart, and lung strengths into July. I had to be ready for 7,000 feet above sea level and a lot of active time. By the time we left for Utah, I was ready. One little thing was still bothering me though; my white count had not gotten out of the twos since my first bout with pneumonia.
I again did all the right things making my way to Utah. I felt great when I got there, and for my first 5 or 6 days. In fact, I even did a two-mile hike at over 8,000 feet during that period. I was feeling strong and very positive until “the cough” hit me around half-way through the trip. In the back of my head I was a little concerned, but kept telling myself it was just the dry air and kept pushing through.
Déjà vu all over again with myeloma setbacks Long story short, four days later, although I didn’t have a fever, and was in the mid-90’s on oxygen, I had to use everything I had to get on the plane home. One four-hour flight and one 90- minute drive later, I was dizzy, weak, and had 101.6 degree temperature with a 91% oxygen absorption. Another diagnosis of pneumonia, another week in the hospital, and a white count of 1.4 was now my reality.Control-Alt-Delete..... RebootAs I write this blog, I can tell you that I lost about 80% again and it is taking longer to bounce back. I am not backing down though because I know that if my processor wasn’t running as good as it was when I had to reboot, I would be dealing with a much tougher recovery.Picking my battlesThe demon I continually have to fight now is the one that whispers in my ear, “You can get back to where you were physically before you got sick.” That voice has only led to disappointment. I am getting better at ignoring it, and listening to the voice that says, “You can be the best you possibly can, under the circumstances.”I am accepting (not easily), that the rest of my life will be a series reboots. Also, I know I need to come out of the them with the newest updates intact and my drive running as efficiently as possible. The only way I can do that is stay active, exercise as much as my body will allow, and eat as well as possible (Sorry, not giving up cheeseburgers).I’ve also decided that the next time I need to reboot (which actually happened today, and will happen again), I’m not going to just accept it as another Control-Alt-Delete moment. No, I know I won’t ever get back to where I once was, but I sure can fight to get to my “new normal” best, so I can weather the storm again.Language alert for computer keys faint of heart I’m planning on running headlong into it that next moment yelling “Control-Alt-Delete Mother F****r !”Or, the way things have been going, I may need to yell something similar during my September trip to Croatia; “Kontrola-Alternativni-Brisanje, Jabem mu Mater!”Reboot.... mic drop...
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