Heavy Hearts

I suppose I'll update this more later, but Ken succumbed to the good battle on Friday, April 1st, 2011.

Services here in MD will be Saturday, April 16th, and in Cincinnati On Sat, April 9 at St. Williams. I believe 11 a.m.

Blog is back up...

Hi. Long time, no talk, huh.

Well, to be honest, I had stopped updating back in September because there really wasn't anything to update. I had the big surgery and was recovering nicely. There was nothing really going on. Then, December came and well, the update below should catch everyone up one what has been going on since the beginning of December, 2010.

Back in December, I was scheduled to have a quick 2 hr outpatient surgery to separate my epiglottis from my new tongue, since they had fused together during the healing process. Apparently this type of thing is somewhat common, so they were confident they could take care of it. It was during the pre op work and scoping that they discovered swelling in my voice box and the area surrounding it. Again, they didn't think this was a big deal, they thought my body was trying to protect my lungs to keep fluids from getting into them. Well, the surgery didn't go as planned. I nearly bled out on the operating table, due to my new tongue being so sensitive. But, they took this as a good sign. They said since the new tongue was so vascular, it was healing well. So, a 2 hr outpatient surgery turned into a 2 day stay in the hospital.

Fast forward to the end of January. I had some more swelling in my throat and was put on a steroid to combat that. To add insult to injury, I started having some serious vomiting issues. So, I went to the E.R. for that. Got admitted to the hospital, but not for the barfing. Turns out the swelling in my throat was so bad that my airway had nearly closed, so they had to put a tracheostomy tube back in. That was a five day trip in the hospital.

A few weeks after that, I got put back in the hospital, this time for bleeding issues with my new tongue. It was only a 3 day stay this time. They were able to find where I was bleeding from and was able to cauterize it, but they didn't like the looks of what was causing the bleeding, so they did a biopsy of the site a few days later in the doctor's office. This is when they discovered that the cancer was back.

They ran a PET scan to see just how bad it had come back and if it had moved beyond my head and neck. If it was still local (meaning just in my mouth & throat) I had three options: 1) they could do another major surgery to get rid of it. 2) they could try chemotherapy or 3) do nothing and let nature take its course. If it had spread beyond my head & neck, that meant they could not longer cure it and my options were very limited. If it had spread my options were 1) chemotherapy or 2) let nature take its course. It has spread. Not only is it in my new tongue, it is in the floor of my mouth, vocal cords and has moved into my bones through my left collar bone. After discussing the options with my surgeon and the oncologist, we have decided that surgery is not an option and really neither is chemotherapy. I decided to let nature take its course. I am now a terminal cancer patient.

So, there is the update.

short version update

Just to make everyone happy, here is an update. I'm going to keep this one brief, just kind of hitting the highlights. I'll put a more detailed update out when I can sit at the computer for longer than 10 minutes.

Let's just say since the surgery, hell would be preferable to what I have had to put up with. I left the hospital on Sept 3rd, feeling like I had hit rock bottom physically. Well, I hadn't. The first week to week and a half was just brutal. I barely had the strength to stand long enough to take a shower and considered it a victory if I could walk from one end of the apt to the other. I was always hot, couldn't sleep and was just miserable. Fortunately, the corner was turned the middle of last week. I'm still exhausted, can't sleep, but I am starting to feel better. I actually feel like getting out of my chair and doing things. Granted, it's small things like getting the mail or being on the computer, but it's something.

The trach tube is out. They took it out this past Tuesday. It would have been last week, but when they first tried to "cork" the trach, I got bronchitis. That, along with the 102 degree fever set everything back a week. Once we got the bronchitis cleared up, we corked the trach tube for part of the day for three days, then corked it full time for three days. Now, all I have to do is wait a few days for the hole to close and it will be one less thing I have to worry about.

There is more, but like I said, this is only a brief update, basically to let everyone know that I am still alive. Once I feel somewhat better, I'll bring y'all up to speed on everything else.

one more time...

Into the abyss we go. Again. Tuesday morning @8:45 am is when the surgery and final battle are set to begin.

There are few times in life when you can see just how serious of a situation you are in. This is one of them. I am more apprehensive about this surgery than all of the other ones combined. That apprehension comes from the fact that this is the most serious surgery I have faced. In addition to the glossectomy and replacement, they are also inserting a temporary tracheostomy tube and temporary feeding tube (oh, the joy at that one). Those plus all the other gadgets and gizmos I will be hooked up to and I'm probably going to look like Locutus (you know, from Star Trek, The Next Generation). Yeah, that's how serious things are going to be.

In surgeries past, we always seemed to leave an escape path for the monster. No matter how well the doctors and pathologist performed, it always found an out. No more. Not this time. I am taking all possible doubt about this cancer and removing it. Literally. I'm done. If this thing wants to win, it is going to have to kill me. That just ain't happening.

I got to much to look forward to and just to much to do. Emily is just 18 and starting out in the world. She's gonna need my help feeling her way around until she is on her feet. I also need to be around for her to help her pick out a wedding dress and plan her wedding when she finally decides who she wants to settle down with. I have Lilli, who, at age 9, has decided that she wants to be in the Little League Softball World Series and a famous softball player. Katie is a wonderful Mom, but she can't help Lilli with how to hit or throw a curve ball, how to turn a double play or how to throw out a runner at home on a ball hit to the outfield. Speaking of Katie, we have a lot of growing old together that I really don't want to miss out on.

I said in an earlier blog from a South Park quote that in order to beat cancer you have to be willing to give up everything, because cancer is willing to take everything. That is what I am doing here. I am putting it all on the line tomorrow. I'm all in.

With that being said, I just want to take a minute here and thank all of you for your prayers, good thoughts and all the other kinds of support you have given us over the past 14 months. (Yeah, it's been 14 months since this started.) I honestly could not have done all of this without your help and support. My attitude has kept everyone positive and in return, your positive attitude has helped and propped up mine. Whenever I would feel down or upset about this, I would tell myself, "Self, you can't be down, you have all these people behind you supporting you and looking at you to beat this thing. You need to pick yourself up and keep moving forward. You can't give up or let them down. They're all counting on you to pick up the win. Let's go!" And I would do just that. I have an amazing cast of supporters who just will not let me fail and I appreciate it soooo much. Without it, I really don't know where I would be. From the bottom of my heart, thank you and I appreciate each and every one of you more than you'll ever realize.

So, into the abyss one more time. This will be the final, epic battle we have been waiting for. We will emerge triumphant.

Semper Fi...

The Nuclear Option has been selected...

You know, in a weird sense, I now know how Harry Truman felt when he was deciding whether or not to drop the Atomic Bomb on Japan back in WWII. His decision was either go with a conventional invasion of the Japanese mainland and prolong the war or drop the bomb and end everything once and for all. Well, that is kind of what I have been looking at. Do I go with the conventional surgery and then wait for it to come back or do I just go ahead and lop out my tongue now and end this thing.

In the last blog, I asked when is enough, enough. Well, we have an answer to that question. Enough is enough on August 24th @ 8:45 am. That is the date of the next surgery. The surgery I have opted to have is the total glossectomy. For those of you who may not remember, the total glossectomy is when they remove the tongue and replace it with a piece of muscle from my thigh.

This procedure may not be an actual total removal of the tongue, however. They are going to try to save the left side base of my tongue and attach the transplanted muscle (called a free flap) to that. The final decision on whether or not to leave the base will not be made until they are actually in my mouth and they see how things are.

They are wanting to leave the base because it will help with movement of the flap when it comes to speech and eating. My speech will not get any better than it is now and my diet will definitely change, but, if it means getting rid of the cancer once and for all, I'm all for it. After all, what good is a tongue if you're dead.

The last week or so has been a whirlwind to say the least. When we got the word from Dr. Blanco that this latest tumor was malignant, it was a shock. I think it left both Katie and I numb and in disbelief. We just could not believe that it has come back so quickly. The numbness turned to anger. The anger eventually turned to acceptance. Once that happened, it was time to figure out how to end this.

You know, cancer has tried just about everything to get me. It has knocked me down 4 times now. What cancer didn't expect was for me to get up 4 times, dust myself off and keep on fighting. I'm done playing. Cancer has tried and failed with its knockout punch. It's time for one of my own.

You live for the fight when it's all that you've got...

Does it ever end?

The cancer is back.

I had an appointment with my speech therapist this past Monday and on our way into the building, we ran into Dr. Blanco. While standing there talking to him, he asked to look at my tongue, so I showed it to him and he noticed a small bump on the front of it. He put me on his schedule for that morning and biopsied it. Katie & I didn't really think anything of it since 1) it was so small and 2) it looked different from the previous tumors. Turns out we were wrong.

Here are my choices as far as options go: 1) do a regular resection of the tumor area and follow it up with chemotherapy, if I am eligible for it. 2) have what is called a total glossectomy done. What that is, they would remove my entire tongue and replace it with a piece of my thigh muscle. The glossectomy would also include a temporary tracheotomy and a feeding tube.

Not fun choices.

We see the chemotherapy oncologist Monday to determine if I am a candidate for chemo. Tuesday we see the doctor who would be performing the part of the total glossectomy that involves replacing the tongue with the thigh muscle. Thursday we see Dr. Blanco and decide what way we are going to go.

Onward we go, but I can't help but to wonder, when is enough, enough. I mean, honestly, every time we deal with the monster and vanquish him we think we're done. So, we round the corner to pick our lives back up, and we wind up getting sucker punched like this. It is getting very old and very aggravating.

Big time update...

Well, the surgery was June 25th and was over 7 hours long. Ugh. They took the tumor in the front of the tongue (which was about 1 cm), the tumor in the back of the tongue (which was 3 cm x 4 cm). Dr. Blanco also took my right tonsils and all of the lymph nodes on the left side of my neck. I spent two days in SICU (surgical intensive care unit), with part of those two days being on a respirator. Oh, the joy. Fortunately, for that time, they did me a favor and kept me pretty well sedated, so I don't remember much of it, only that was not the most comfortable thing in the world to deal with.

Once they moved me from SICU, I spent two more days in a regular room before being released on the 29th.

We had an appointment with Dr. Levine (he's the medical oncologist) on the 30th. They didn't have the final pathology from the surgery back yet, so he went over all the options we had for chemo, which was the next step in the process. Let's just say that was not a fun visit. He was talking about chemo lasting 6 months instead of 6 weeks and the possibility of having to go through another round of radiation. Now, he was telling us that all of this was a worst case scenario, and nothing was written in stone, but it was still unsettling listening to all of that.

Fast forward to todays appointment with Dr. Blanco. We went in expecting to hear the worst. This is the news we get from Dr. Blanco;

1) all the margins came back from pathology negative. That means he got all the cancer.

2) I will not have to go through radiation again, due to all the complications I had with it the last time I had to do it.

3) They are holding off the chemotherapy at this time. They feel that since there is nothing there, it doesn't make sense to run me through the chemo at this time. They are going to monitor me closely and take things from there.

If I have missed something, Katie will make sure to let y'all know what it is.

As of now, I am cancer free. Again. That means I win. Again.

'nuff said.