A Week of Challenges, Frustrations – and I thought it was the Leukemia making be tired.

Man, it’s hard to stay positive, especially when you have a myriad of challenges coming at you from all sides and most of them, seemingly, at the same time. That was last week. As a result, I just wanted to crawl up into a corner and do nothing.

A saving grace for my sanity was being able to watch both LSU and Notre Dame demolish their opponents in prime time. I was also pleasantly surprised to see/hear what McNeese did with Nebraska. Even though you lost, Pokes, way to geaux!

Supporting me throughout all this leukemia mess is my wife, Pam. Yet, it still becomes overwhelming trying to keep up with the demands of what needs to be paid and when, let alone, trying to maintain a clear mind when it comes to business and office matters (another set of challenges). Mental fatigue should not be overlooked and does need to be addressed.

On the positive front, I received two very good reports this past week from my wound care specialist, Dr. Salmon Aly, and my oncologist, Dr. S. Iyer. Both are quite pleased at the progress I’m making, though Dr. Iyer is anxious to schedule my next phase of cancer (CLL) treatment.

That will involve a rather potent IV drip done over several hours once a week for the next four to six weeks. It damn well better work since its “value” is over $300,000. This treatment is designed to work in concert with the current chemo drug I’m taking, Imbruvica. Thank you, again, Johnson & Johnson!

At this point in composing this blog post, I realize that some of this may come across as stream of consciousness-type thinking. Sorry about that. I want to make these submissions as clear as I can.

Throughout this past week, I felt I was moving forward, although cautiously. Then I received a call from Methodist Main (Methodist Hospital in the Texas Medical Center) about my next treatment appointment, which I hadn’t heard was scheduled yet. Okay, frustration building.

Now keep in mind, I’m traveling on this medical journey without insurance (maybe a separate blog post) and I’ve come to realize that I am simply treated differently than if I had insurance (not necessarily a good thing).

The person calling me informs me that BEFORE any next treatment can be scheduled, I need to present current or past bills, which aren’t from Methodist, to serve as a credit toward the balance that Methodist has calculated I will owe for all of this. Or come up with a $1000 deposit, presumably before each subsequent treatment.

Did I mention this dude had no personality whatsoever. It was basically “pay up or you don’t get treated.” Nice.

There went my blood pressure!!

When I learned that my appointment had been scheduled for first thing Monday morning and they needed bills or payment in advance, I got to a point Friday afternoon when I just had to tell everyone, “Time out!” I don’t care to be pressured, hassled or made to feel like I’m a hostage.

I have to remind myself to take care of “me” because oftentimes it feels as if no one else will. I plan on rescheduling this new treatment at a more convenient time, after Pam and I have a better understanding of what we’re up against. From the get-go, this healthcare system seems to be more interested in money rather than the actual treatment. Sigh!

Adding to all this anxiety was what I learned late Friday: Something was wrong with the account at my bank and no one at the bank could explain what had happened. All I know is that a major error has taken place and I’m paying for it. Nice way to end the day, let alone the week, huh!

I guess I have to look upon this journey as having its high and low points. Yes, the bureaucracy at Methodist is absurd. My aggravation comes in when I learn about something after the fact or that I was not aware of in the first place. Communication among departments is, well, it needs a helluva lot of improvement. 

The specialists, however, are wonderful. Dr. Iyer is even seeing me pro bono, which I just learned about during my last visit with him. In fact, he’s hosting an educational seminar September 11 dealing with various aspects of blood cancers. If you’re in the Houston area, it would be worth your time. It’s also free.

So, onward and upward for a promising and productive new week. I pray every day and several times each day that I can get through some of this nonsense and have a successful treatment program that will ensure I truly am on the road to recovery. I can’t lose sight of the big picture. All this other BS simply must be put in the proper perspective. I know, easier said than done.

‘Til next time. 





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