Thinking again…..

I belong to an angiosarcoma FB group, and many/most talk about going to MD Anderson and Dr. Ravi who is supposed to be the AS guru.  I’ve wondered at different times if I should go there.  Houston is not exactly handy – over a 9-hr drive. And there is no handy place to stay like it is at Mark’s in Overland Park, near KUMC.  I’ve even looked at housing around or near there, and they are mostly over $100 a night.  I’m not sure I would be up for starting all over with someone new.  It’s quite possible I’m too far along anyway.  I don’t know……  If I were 25 or even 40, I’d go for it for sure – probably would have started there.  But I’m 72. And here’s the other thing.  If AS were curable, I’d be a lot quicker to jump on it.  If I would have a chance at that 20 more years I spoke of in the last blog entry, yes, it would be worth the effort.  But it is not curable.  Would it be worth the hassle and perhaps pain and sickness from the treatment to extend my life another 6 month?  A year? 2 years?  I don’t know.  And from what I’ve seen, I’m not sure that the treatment would be all that different from what I’ve already had.  When you are dealing with constant mutations, it is like chasing fire flies on a summer evening.  By the time you reach that spot where you saw the light, it has already moved on.  You might be lucky enough to catch one, but eventually it’s light goes out.  And you’re off chasing another one.

I may try to call someone there and explain where I’m at and what I’ve done – to see what they say.  I’m going to see Dr. Page Tuesday.  He is with Cancer Centers of Kansas out of Wichita, but I see him in McPherson – about 20 minutes from here.  He really is just a conduit through which Dr. Power’s orders flow.  But I’m going to ask him if I were his patient, would he be doing anything different.

Like I said, if I were younger, this whole thing would take on a different outlook, and I would aggressively seek out the best treatment available.  I don’t think that the KUMC doctors act in vacuum.  I know Dr. Powers has surprised me with medications that I did not know about – and HE didn’t even think would work.  I know the field of oncology is working on a lot of this immunotherapy (even though it is not appropriate for my markers – boo) and even the newest – stem cell treatments.  So, who’s to say that in another 3 months somethings might come up for me.

I know that God has a plan for my life.  I don’t know if that means He is getting ready to take me home in the near future, or if He has another treatment modality just around the corner. Or if He decides it is time to finally divinely heal me.  I gotta be honest – I’d sure like it to be the last of these options, and even more honest – that it be sooner than later.  I just know that I have to remain in the boat.  If I jump out and try to get there on my own, I’ll drown.  I have to admit, it sure is hard to trust completely every second of the day and night.  I do trust Him and His plan, but there are so many questions that remain unanswered, and I’m just human, so I wonder…..

Please help me pray for direction.  Should I change horses in the middle of the stream?  Should I just be content to enjoy the time I have, especially while I feel good?  Am I just grabbing at straws?  I don’t want to just sit back and ignore options that are there, if I should be doing something about them.  But I sure need the peace and assurance that I’m on the right track.  I don’t want the indecisions to consume my thoughts every day. I want to go about my days enjoying what I have. Paul says in Phil. 4:12 “I know how to live on almost nothing or with everything. I have learned the secret of contentment in every situation, whether it be a full stomach or hunger, plenty or want.”  TLB  Perhaps I should just follow his example.  But I’m a fighter, not a quitter.  How do you know when to quit fighting?  I don’t know, so I guess I’ll go on fighting as best I know how.  Just wish a sign would fall out of the sky that says, “THIS way!”

But as always……I’m in His hands…..   (scroll down for pictures if you want)

Affecting my right eye now.