27 May 2010

Warning orders have been issued...

the good guys

the bad guy


It has been over a month since my last update. There has been a reason for that. There was nothing to update. I was at work, coaching Lilli's softball team, trying to keep Emily focused on school (I know, good luck with that one), basically life was normal. Everything was fine.

I had two followup appointments this month and figured I would go to those and then come here and tell y'all that everything was going great. Good idea, except for one little thing. Things aren't going great. Last Monday, the 17th, I went to see the radiation oncologist, Dr. Zinreich. She noticed some swelling in my neck. The swelling on the left side is not a big deal. That is just a blocked salivary gland. The right side had some pain associated with it. I told her that this had been going on for less than a week and I thought it was simply b/c of all the pollen causing my allergies to act up. She still didn't like the fact that there was pain associated with this, so she talked with Dr. Williams and she ordered a PET scan. The next day I saw the medical oncologist, Dr. Levine and he concurred with both of them. I had the PET scan this past Friday.

I got the results back Tuesday. The good news is that there is nothing wrong with my neck. No abnormalities or anything out of the ordinary. The tongue was a different matter all together. They found a 1.8cm abnormality at the base of my tongue.

Everyone involved in this is just baffled as to what it is, why it is where it is and how it showed up on this PET scan when the one I had back in March didn't show anything wrong with my tongue at all. There are two ideas as to what this could be; 1) it could be something called radionecrosis. (http://www.achm.org/index.php/General/Medicare-Accepted-Indications/Soft-Tissue-Radionecrosis.html) or 2) the cancer is back.

Dr. Williams is just baffled about all of this. He said normally it takes months for a cancer tumor to get this big and it would have shown up on the PET scan in March. He is also confounded by the fact that this "abnormality" is located in the back of the tongue. My other two tumors have been located in the front of the tongue, so it doesn't make sense that this one would show up in the back. He did a biopsy today (ow). He should have the results back next week. In the meantime, he has referred me to another doctor in case this is a tumor and has to be removed. If it has to be removed, it cannot be taken out like the other two tumors. I may have to have it taken out with a relatively new procedure called TORS (trans orbital robotic surgery). Before I go into all the details about that surgery, we first have to see if this is a tumor and if it is am I a good candidate for TORS. Dr. Williams seems to think that I am, but there are things they have to look at to make sure.

That's the medical update. Here's the personal update. To say I'm angry would be like saying King Kong is a big, hairy ape. I don't get this. I don't understand it. If this is a tumor it will be the 3rd one in less than a year. Where is this coming from? More importantly, when is this ordeal going to be over? Every time we get close to the end, something like this pops up and we have to start all over again. It is getting old and quite frankly I am tired of it.

Now, before you tell me that I need to keep a "positive attitude" and that God only gives you what you can handle, I'm gonna stop you right there. My attitude hasn't changed. I'm still gonna beat whatever this is and there is no "woe is me" attitude. Whatever this is can, quite honestly, kiss my left cheek b/c I'm not putting up with it for long. I have plans this summer and I plan on following through with them.

What really yanks my chain, though, is the simple fact that I have to deal with this. Again. Isn't twice in one year enough? I have been told that I should just turn everything over to God and he will handle it for me. Well, I've done that and, to be honest, it hasn't done much good. It seems like every time I turn around there is just more and more of this nonsense to deal with. I mean, honestly, how much more am I expected to take and just deal with before I lose it? I have told people that I feel like this generations version of Job. What is the whole point of this exercise? Is it to prepare for something in the future? Is it to find just, exactly, where my breaking point is? To date, I don't know where that breaking point is, but I'm sure it's out there and we are definitely closer to it than we were last week.

How much more can Katie & the girls deal with? We fought the monster last year and won. It cost us dearly, but we won. We fought it again this past March. And won. But, how can I look at them and ask them to step off into abyss one more time. I know they'll go, but they shouldn't have to. They have earned the right to have some normalcy in their lives.

I don't know. I really don't. All I do know is that I have a new doctor to see (this one will make 6 doctors I have seen about this since last year) and I have more work to do to fix myself. I also know that whatever this is, will be dealt with swiftly and severely. You see, no matter how many questions I have, I won't stop fighting until I have won. For some reason, the bad guys in all this have severely underestimated my will to win. Make no mistake. I may moan, groan and complain, but I will win.


Rise and rise again, until the lambs become lions...

2 comments:

Jerri said...

Ken,

On a very smaller, much less significant scale, I can kind of understand how you feel. When my retina detached in '02, it seemed like it was surgery after surgery after surgery, and at points the retina completely detached and I was blind in that eye. There were plenty of times I questioned the "meaning" of it and why it was happening to me.

I certainly would never assume that I could know exactly how you feel in your fight. I just want you to know that I experienced very similar thoughts and feelings to yours, and I want you to know that it's perfectly normal to wonder "why?"

Someday you will look back on it and probably still wonder "why," but the frustration you are feeling today will subside with time. In the meantime, we know you have the heart and the fight (and an awesome family fighting right along side of you)to beat whatever this new development is and come out stronger.

In the meantime, if you feel like venting, yelling, or just giving a "People's Champion" type speech, we're hear to listen and we'll keep praying for good results.

Love,
Jerri & Jason

Dani said...

Just like Jerri said, I also understand how you feel. I am not facing the kind of battle you are facing. So I can't imagine completely, but I do know that I have been in that same place with questioning "why" when it comes to Bailey and Drew and everything they have been through with their heart conditions.

Right now (while everything is fine, they are healthy, and there are no surgeries in the immediate future) it's easy for me to look at it all and say that God has given us this for a reason (which I do strongly believe). But I have absolutely been in that same place where I wanted to know why we had to go through this. Why did the kids...BOTH kids...have to go through it all. And how was this fair to us, and more importantly to them? But I do believe there is a reason....even if I don't understand right now what that is. Some day I hope I will.

Please don't ever feel like you are alone in that feeling. I know right now it is probably REALLY hard to look at the hand you've been dealt and understand why it has been given to you...but I hope some day when this is all behind you, you will as well. I will also echo my sis in saying we love you all dearly, and if you, or Katie, or the girls need anything at all...even if it's just to vent...we are here.

Love,
Dani, Kevin, Bailey and Drew