Two infusions and many pills to go...

I'm so close to the end of this thing, I can hardly stand it! I had my sixth infusion yesterday (1/2/2015) I only have the 15th and 29th to go... I also had the pill form that I take Monday through Friday twice a day. I think those pis give me a harder time than the infusion does. As most of you know I lost all the hair on my head sans eyebrows. The hair on my legs is falling out too. That's actually kinda funny. I'm seeing scars on my legs that I have know idea where they came from. (Yes, the hair on my legs was that thick!)

I've also discovered that the hair on my head does try to grow back a little.
Here's what it looks like if I let it go...

They've helped me get some of my meds figured out. I would often have a hard time getting to sleep after chemo, but they've given me so anti-nausea meds that happen to have a side effect of knocking you out. Perfect!

Doc still acts as if I'm the poster child of everything going correctly. Of course, I'm blessed for that.  So far, the game plan going forward is still the same. I need some recovery time from all this before I can have another surgery. That's when the colon tumor comes out and a bunch of lymph nodes. That leads me to something curious... I've seen most of my scans, and I've asked the doc about this, but my lymph node do not show any cancer. Stage four Cancer travels through your lymph nodes... So why do my show clean? I have no answer for that and neither does my doc. All he says is "don't look a gift horse in the mouth!). I tend to agree!

So anyway lots of things still up in the air. I don't know when surgery is going to happen, but I look forward to this particular chapter closing in my life! The next one has got to be better!

2 months since surgery

Well it's been 2 months since liver surgery, and everything is pretty good. I have one heck of a scar and still have some pain related to it, but it's slowly getting better. I started another round of chemo two weeks ago. This time it's pills and an infusion every two weeks.

The pills finally made me lose my hair. I've had a couple of false starts on that one, but there was no doubt that it was going away last week. I let the kids dye my hair all different colors before we shaved it off. They had a lot of fun with that, and even with the cutting it short. When they realized that I was going to shave off the rest, they freaked out a bit. Abi still won't look at me if I'm not wearing a hat! I know she'll get used to it eventually, but right now it's pretty hard for her. She's always been the most sensitive.

I don't know if I've just run out of things to say, or what has happened... Maybe I've grown bored with writing about the status quo. My posts are getting farther and farther apart, and there's less content in each one. Maybe there will be more interesting things later, but so far all I have is the baldness, and sickness during the infusion.

Oh yeah, if I didn't mention it before, I went back to work after five weeks off from surgery. That was a blessing as I was going to lose my mind if I stayed home any longer! So things are back to normalish.

The New Deal (It has nothing to do with FDR...)

Ok, alter  some confusion and more tests it has been decided that I will have another round of chemo instead of having surgery right away.  This is just about polar opposite of my last post (notice the gap in dates). During my recovery from the liver resection, which is still progressing, I had another ct scan to see how things were going. I also has blood work to check both liver function and cancer markers. All of these tests came back just about perfect. On paper, I'm clean! However my oncologist explained it like this:
95% of the cancer is in the primary (my colon)
4% is in the secondary (my liver)
But it's the last 1% (like little seeds) that's floating around your system looking for a place to land that kills you...
He pointed out that there is no evidence that I even have these seeds, however, it's important to make every attempt to distroy them if we can. Therefore I'm doing another round of chemo before surgery. It will be totally different drugs this time. I'll have a pill based chemo I take daily, and an infusion every other Thursday. This will not be an all day infusion like the last time. It's only an hour or two...

It's been just over five weeks since the resection surgery. I went back to work on Thursday. What a wonderful feeling to get some sort of semblance of normality! It's been a little difficult to get
My head back into it, but it will get there.

Once again, I am amazed and blessed by how well things are going. Who would have believed I could get this far this quickly? I still have several challages both with chemo and surgery. There are potential side effects with the new drugs I may need to deal with, but we'll see. I may skate right through! Only time will tell...

My son (11 years old) is playing hockey on the Holland Ice Dogs house team. It's been a blast watching him play. I don't normally doing this sort of thing, but I want to point out how great The Edge Ice Arena is. (I ended that sentence in a preposition!). When they found out what was happening to me, they bent over backwards to make sure Calvin could play. I am very greatful for the kind gestures they have made. Many many others have gone out if their way to assist us as well.. I thank you all, and love you all!

Mike

A major change in plans!!!

Well recovery is going pretty good. I'm still hurting, but the incision is healing up fairly well. I went to see the oncologist in Thursday. When he walked in, he was reviewing my case. After a few, he looked up and said "wow, you're making this look easy!" That's a pretty cool thin to hear from your doctor when, at one point, you were given 18 months to 2 years... I asked him about a remark the oncology surgeons PA said. She said "you've taken a strange path to getting here." At the time I didn't bother to have her clarify. When I asked Dr Campbell, he just smiled and said he wasn't really sure, but maybe she was alluding to the fact that not too many years ago, they wouldn't have done anything with my case. I would have been considered too far gone....

My how things change. The original plan was 12 rounds of chemo, liver recection, more chemo, colon reception, more chemo, microwave oblation on liver. Dr Campbell has decided to change things up a bit, based on my body's response so far. I've already had the 12 chemo treatments, and 70% of my liver removed, but instead of more chemo, I'm going right back to surgery after I'm healed up from the liver. (4 to 6 weeks). At that point, I may not even need more chemo!

That's the best news I've gotten in a long time. I was dreading going back to the drugs. Dr Campbell loves to use analogies. Being that the MLB postseason is around the corner, this is what he used to explain my situation. "Chemo got you the first base. The liver was second. We take the colon to get you to third, and you're staring at home."

One of the reasons for the change in plans is based on what the geneticist found. I do have a known gene mutation. Oddly enough, it's one that up until a couple of years ago, they didn't even look for it in  men. They didn't think we could get it. In women it generally shows up as breast cancer, and men as either colon or prostrate. This is good and bad news. On the bad news side, obviously, is that my kids have a high probability of  having this mutation as well. The good news is we know about it, so we can watch out. Also, this particular one is easier to beat than most.

They are going t send off some of my living tumor cells to a group that will test it against all 298 known cancer fighting drugs. This targeted therapy circumvents one of the hurdles the FDA puts up. Using this method, I can be prescribed any  drug that shows it will re
Act, even if the FDA never approved it for colon cancer. I may not even need this, but it's nice to have a ace up the sleeve!!!
My sister and parents will need to have this genetics test run now as well to see where it started, and whether or not my cousins (on one side or the other need to be warned) it would be easiest if the mutation started with me, and  no one else needs to worry about it. We'll see.

A lot more has happened over the past couple of weeks, but this is the highlights. Maybe I'll throw out a bit more later...

Again, thanks for  all the prayers, and help that we've received in so many ways!!!

Be gone with you, liver!

Ok, so here's the latest. The surgery was considered a success. They removed the entire right lobe, my gallbladder, and a large portion of my left lobe. (70% of my liver in total) That's more than they had originally planned, but the feel really confident that they got all of the cancer with the exception of the one tumor that has to be zapped electrically. They actually call the procedure "microwave oblation" I'm not sure how Vinney Johnson was involved...

That procedure with have to wait for another day. They used a chevron a shaped incision. Its about 2 FEET wide! There a 22 sutures holding is shut. It looks pretty horrible. I've been sleeping a ton lately.  They have me in some pretty heavy narcotics right now. So I swing back a forth between so stoned, u can barely talk, and do much pain, I can barley talk. (guess which one I like better!)

The geneticist came in to talk to me in the hospital. If you recall, there were a series of tests that they wanted to run to see if I had a predisposed mutation that would have led to all
of this.  Turns out that the answer is yes, but in a somewhat surprising way. I came up positive on a marker that they have only been testing in men as of vert recently. They only saw this one in women with breast cancer in the past, but now are seeing it in men with prostrate and colon cancer. That still does not mean this is how I got it, they will never know for sure, but now that u have the mutation, my sister and parents need to be checked. I may be the "patient 0" or it could have come from father up the line. My parent need to be check so the proper set of cousins are warned. It's very possible that no one else will have this mutation, and even if they do, it's not a guarantee of getting cancer. So we'll wait and see on that one.

I meet with the surgeon next week to get passed back to the oncologist. Still need colon surgery and that last liver procedure. And more chemo... Overall, things are going pretty good. Better than expected. Thanks for all the prayers. I'm doing so much better than I deserve though all this.

Cheers!

Good news, bad news.... Same old song and dance

So here's the latest. I met with the oncology surgeon yesterday. (This is the same guy that i met when I was in the hospital for 4 days. He's the guy who said 18 months to 2 years! By the way, he doesn't remember me...) Anyway, he gave me the results of the PET/CT I had a few weeks back.

For those you do not understand what the difference is between a PET scan and a CT scan, I'll give a brief description. A CT scan show anatomy. I sees a mass or bone, or organ; you know, your innards! I can show you the exact location of the tumors. What is cannot do is show you the the tumor is doing. That's where PET comes in. Its job is to show function. (It works on other stuff besides tumors, by the way.) In my case, I was injected with radioactive glucose (sugar). This isotope is like Brawndo, it's got what tumors crave! The sugar is absorbed by a healthy tumor (it eats it) This makes the tumors glow in the scan. That's where the good news comes in: my tumors didn't glow!!! That doesn't mean they're dead (they could be), but it does mean they aren't eating. So they are either in the process of dying, dormant... I'll take either if those!

There are several small tumors on my liver. Most of them are on the right lobe. The docs say they are going to take all of my right lobe and my gallbladder. That kind of stinks to lose the gallbladder as collateral damage, but that's the way it goes...

That's not the bad news, though. The really bad news the on the left lobe. I have a couple of small tumors on that side as well. two of them are not an issue, the other one is extremely close to the main vein that drains your liver. If that gets cut, or plugged up, you die. Period. So that means they cannot cut it with a scalpel, use a laser, or radiation. All of those have inherit risks that are too great to take a chance. It's not all bad though. Lemmen-Holton happens to be one of only 12 places in America (so the doc says) that has this electric probe that they insert into the tumor and electrocute it to death. Sounds like fun, right?

So here is the order of events...

9/11/2014 - liver recection
4 to 7 days in the hospital. After that, I'll be off work for about a month.
?/?/2014 (i hope) colon surgery. more time off work, or at least a weight restriction.
After that the electric shock therapy. 
After that, more chemo. At least six months worth. (oh joy)

So chemo worked well. It did exactly what it was supposed to do. Now the surgeons get to show their stuff.

Oh, one more thing: They are having me see a geneticist. They want to see if I have a gene or DNA mutation that caused this. This is important more for my kids than me. If this is something they can get, we want to catch it super early!

Thanks again for all the prayers, kind words, help at home, support and love. I am deeply moved by all the generosity that has surrounded us. Along those lines, the Edge Ice Arena insisted that we sign up Calvin for their in-house hockey league. (whether we can afford it or not, they said not to worry about the money)   So make sure you go out and skate on a Saturday open skate day, or have a skate party!

Just some observations...

There are many things in life that people argue over. Democrat vs republican, Sunni vs Shiite, coke vs Pepsi, Mary Ann vs ginger the list goes on and on. On the other there are some things everybody knows: Strawberry jelly is better than grape, a medium rare steak is the best way to cook it, the Scorpions were the best metal band of the 80's, the 1949 chevy fleetmaster deluxe is the coolest car ever, and if you get 50% of your liver removed, it will grow back after a week or two.

Ok, some of those facts might be my personal opinions, bit the liver thing is real! It amazes A d and delights me that this is so. I'm going to have the right love on my live basically removed... That's a little scary, as you might imagine, but I take a lot of comfort that is come back on its own with no drugs and weird procedures. It's like are own salamander tail.  

I've tried to keep my reading about cancer to a minimum. There are a voile reasons for this. First and foremost is because most of the information is not good. A great deal of the info says I have five or so tears. I choose to say "no" to that. I'm on the far right side of the bell curve so far, and I choose to stay there. Another reason is that I want to listen to my doctors, if I start playing doc myself, I may stop listening to what they say. As Steve Martin said on Saturday Night Live, "who's the barber here?" (If you don't know that reference comes from, get on the googles and look it up. It's quite humorous!)


I've learned many this this year. Some have been beneficial other I wish I didn't know. Either way, it's been quite an adventure. I an on pulling through this, buck all the odds. Will I succeed? Beats me, but as I've said probably a hundred times this year: "I can't quantify how much a positive attitude has on my success, but I know if I think I'm going to die, I'll be right!"