My life stays interesting

So where do we pick up on our hero's latest adventures? So much had happened in the past few weeks... My truck died leaving me stranded in Alma. The transmission lost first gear, and I really didn't want to drive in reverse all the way home, so Angela came and picked me up...  I had to borrow my uncle's truck (thanks Dave!) and grandmas's trailer (yes, my grandmother has a car hauler... Yours doesn't???). This is how it went: drive from Hamilton to Greenville in van, pick up truck and trailer, drive to alma, load up truck, drive back to Holland to drop off dead truck, drive back to Greenville to drop off truck and trailer, drive home in van... That's about a 10 hour job.

I tried to get a replacement transmission from a "legitimate rebuilder" in Saginaw. Big mistake, after three weeks of unkept promises, I finally pulled the plug.  I'm still looking for replacement. In the meantime, we are using my father on law's truck (huge thank you to Jim!).

Let's see... Also, my hair started to grow back. I look like Jean-Luc Picard right now, but with WHITER hair. We'll see how that goes, but looking like Grecian Formula is in my future! I'm just glad it's coming back.

We're one step closer to sellin the old house! I'll really be glad when that's behind us. I'm really happy that it's working out for our buyers, they're really great people! We just need to get a new purchase agreement filled out as the old one is out of date now.

Truth be told, all of that was just fluff. I was just making you wait for the real news. I had a PET scan on Tuesday, and met with the surgeon today... I have good news and bad news...

Good first: zero uptake on both the primary (colon tumor) and the secondary (that last little spot in my liver). That means they are either dead or dormant. Doc said if I were an eighty year old, he'd would just send me home assuming I'd die of something else before the cancer came back. I'm not eighty though, so we're going to be a little more proactive. The primary is a very straight forward operation, not much risk involved... Only real danger is if the place where colon is sewn back together leaks, it would be very similar to a ruptured appendix (that would be a bad thing).

The bad(ish) news: The secondary may not be quite as simple... This still has the potential to come out on the good news side, so let's start there. When he gets in there, they're going to take a syringe sample of the mass in my liver and biopsy it right then while I'm in surgery. If it's benign, we're done. If it's not benign, it gets a little tricky. The mass is pretty much in direct contact with a major blood vessel. This potentially causes all kinds of problems. If they attempt to cut it out, they could nick the blood vessel, and I could bleed out on the table. Or if the use microwave oblation, they run the risk of not getting it all, and having it come back OR going too deep and damaging the blood vessel, which could cause me to bleed out on the table, or cause a blood clot that could cause a stroke or embolism and kill me a later date (fun, eh?)! Another option is a thing called a nano knife. It's a last option kind of thing for a couple of reasons: one, it's still really new, and no one is exactly an expert with it yet. Two, it's rarely covered by insurance (yippee!!!). It's still considered experimental by most insurance companies.

The PET scan revealed a five cm spot way low on my pelvis. Possibly a lymph node, but no way to know with out going spelunking. It's very possible that's it's nothing. There's are several reasons to have uptake on a PET scan. Any kind of damaged tissue will show up on the scan. They specifically asked me if I had done any vigorous exercise in the past few days, as the micro tears in the muscles would show up. So I'm not too worried about that, but they have to go look for it to make sure... I asked the doc what his gut told him, and he doesn't think its a tumor.

Here's the last bit of bad news, because they have to go into the liver again, and the colon, and low on my pelvis, laparoscopic is off the table. I will be cut right down the center from my diaphragm to below the naval! (Ouch). This just means another long hospital stay and many days off work.

I was out for five weeks total during my last surgery (one week in hospital and four weeks at home) I'm hoping to shave a week off this time, but we'll have to wait and see.  By the way, this happens on the 24th of this month! At least Calvin's hockey season will be over.

Did I mention that his team won their tournament last weekend?  What an awesome experience. This is a truly awesome bunch of kids, as well as parents. I wish they could all stay together for another season, but alas, many will move up to bantam next year. I've made friends just like calvin has, and I'll be sad to see them go.

Shalom

Getting better

I have come to some conclusions...

I'm a big fan of Steve Martin. Not only is he a talented comedian, he's also a gifted musician. One of my favorite skits he performed on Saturday Niggt Live was entitle "How to Make A Million Dollars and Not Pay Any Taxes". The best part was right at the beginning: "First, become a millionaire." If only it were that simple...

My cancer related conclusions are on a similar track. You know what the best way to survive Cancer is?  Don't get cancer. Your second best option? Be cured from cancer.  I'm shooting for the second on that list seeing how I screwed up number one...  So far, I'm doing pretty good. I met with the oncologist last Thursday. he says everything is going better than planned. My blood work comes
Back totally normal as if I never had cancer to begin with! The tumor onu
Colon continues to shrink, and it's time for it to go... I meet with the surgeon soon to discuss the details. I'm told that it should be some time in late March or early April. If everything looks good at that, that's the end of this adventure for now. I transition to the three month checkup phase...

The way I see it, when they remove the port from my chest, that's when they feel it's not coming back anytime soon. That's when I will finally exhale. I hate that stupid thing! It's uncomfortable, it is conspicuous, and somewhat awkward. I suppose it shouldn't matter as much as I make it seem... My day of going shirtless at the beach are over regardless. The scar on my chest/stomach are bad enough, the lump from my port is nothing by comparison, but nevertheless, I really want it gone. I guess it's the symbolic nature of it.

I started lifting weights a bit.  (This was ANOTHER gift from awesome people we know) I couldn't bench 100lbs when I tried... That was a bit demoralizing! I could do reps of 50 without too much trouble. Hard to believe how much you can lose in such a short period of time... I started chemo in February 2014. One year, and I have the stamina of an eighty year old!

Regardless, things are going really well. I'm making better progress that should be expected, calvin is still getting better at hockey, Andrea is in the learn to skate hockey program, getting pretty good. Abigail had a great swim season. We had her awards night banquet this evening. I look forward to many years of chaotic nights trying to figure out how to get three kids to three different events in three different places...

On a different note, look up James 4:17 in a bible sometime. I think I'm going to adopt this verse as my own personal crusade. God didn't put us here to look pretty (I'm in big trouble if that's the case) or to just sit around and wish that things were better. "Therefore to him that knoweth to do good, and doeth [it] not, to him it is sin." 

Think about that verse for a while....

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!