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Author: TriSec    Date: 07/18/2012 20:12:51

It all started innocently enough.

Back on Sunday, June 24, I spent an afternoon outside hovering around the grill. There was much meat, a few martinis, and I had just laid in my summer supply of smokes, so I capped the evening with a Victor Sinclair churchill.

But....I was sitting their leisurely puffing away, and I felt a little 'off'. Bloated perhaps, like I ate too much. That does happen from time to time, so I didn't think much of it.

Monday morning, I awoke to some discomfort, but went off to work anyway. I tried to ignore it during the day, but I kept putting off doing anything for two reasons...I'm a tough fuck and I was hoping it would pass, and we were waking my dear great-uncle that evening. I dutifully drove to Melrose and saw all the family, taking care to cover up any probelms I was dealing with.

Back home, I was feeling really bad. I went to sleep, hoping it would be better in the morning, but at 3am I sat bolt upright in bed, nearly doubled over from a sudden attack. I almost called the friendly EMS guys for a ride, but incredibly, it passed and I settled back to sleep. Tuesday morning, I popped a couple of Advil and went off to the funeral. After that, I went to visit a friend that just had a knee replacement....and then directly to my doctor's office to the first appointment I could get.

Doc poked and prodded at me and said "You know what this is, right?" "I'm thinking appendix". A wan smile and a grim nod confirmed the initial diagnosis of acute appendicitis. I had a CAT scan that evening, and then the technician immediately came out and walked me over to the ER to be admitted. Since I was feeling bad all day already, I had had nothing to eat or drink, and now with emergency surgery in the offing, all I could do was watch the lactated ringers drain slowly into my vein while I wished for a glass of water.

Morning came, and with it another CAT scan requested by the surgeon. I was still expecting an appendectomy, but the surgeon told me that it depends what they see once they open me up. I waited until nearly 2pm, then they finally wheeled me down to the OR. Trying to be a good patient, I cheerfully greeted everyone, confirmed no allergies or other difficulties, then they dropped a mask over my face and time ceased to exist.

I vaguely remember seeing 9pm back in my room. No family was around; they had all given up and gone home about an hour earlier. The staff was extremely helpful to me...and fortunately the Sox were on the coast so I had some late-night programming to watch while the anesthesia slowly wore off. In a haze the next morning, I continually self-administered some pain meds, and then the surgeon came to visit me. What I heard was surprising.

It turns out that the appendicitis was a secondary diagnosis. I had what was defined as a "Cecum Mass", and this blocked the appendix and made it flare. Doc told me they took out the mass, my appendix, and the right ascending part of my colon. He wasn't sure, but he though then that the mass was cancerous, but they had to wait for the lab. They also took out 18 lymph nodes, including 3 that were enlarged. Helluva thing to wake up to.

Over the next few days, I slowly recovered....progressing from sponges dipped in ice, to actual water, and finally clear liquids. But it was another 48 hours "until my ass exploded". The last 12 hours of that period were excruciating; I had monstrous discomfort, and to cap that off, I stopped taking the pain med, as I was convinced that it was causing my nausea. I also was being a stubborn old cuss, and was standing up too quickly, which evidently triggered my vagus nerve into dry-heaves. Trust me, it's nothing you want any part of. And you don't want 2 nurses and 2 orderlies converging on your toilet while you are sitting there bathed in cold sweat trying not to puke out what little guts you have left.

Nevertheless....the crisis passed, and after that, I started to feel better. I started taking the hydromorphone again, and by Sunday had graduated from an IV to taking all my liquids and meds by mouth. When I was finally cleared to eat and drink again....well, a can of Coke never tasted so good.

Monday came disharge day...and after waiting some hours for clearance and signoff, I finally went home. There was still no word back from the lab. Even the resident was getting annoyed...as he told me, "I have patients here 7 days a week....the lab only works on business days." But I was expecting news by the time I went back to the surgeon on Thursday to get my staples out.

Thursday came, and we dutifully drove back to Cambridge. Reviewing the surgery, they performed what is called a "Right Cholectomy". They did have to slice clear through my gut and core muscles to get at it. (Yes, I essentially had a C-section. Ladies, you have my entire and wholehearted sympathies.) Then came the lab review. The tumor was indeed cancerous....and had progressed to what is called "T3-N1" stage. What that means is this - "T3" refers to how much of the local area was affected - it grew into the colon wall but did not 'escape'. "N1" is how many lymph nodes were affected; between 1 and 5. The surgeon could only tell me so much, so it was a referral off to an oncologist after that.

Getting home, I immediately jumped online to see what this meant. Converting it to something we're a little more familiar with....I have Stage IIIC colon cancer. I made the mistake of looking at the actuarial tables, and my heart sank. The five-year survival rate is only listed at 28%.

Another week later, and I follow-up with my own PCP. He again walked me through the diagnosis and the findings, and we set up the appointment with the oncologist. Again I went home to read more things I could find, but I only succeeded in freaking myself out. I am still helplessly wondering if I've already made my last trip to Florida...if I'll ever see my beloved Nova Scotia again...and never mind about things like Javi's graduation, Eagle Ceremony, grandbabies, and other such things.

So here we are. I have my initial visit with the oncologist next week. I don't know what to expect, but I'm pretty sure chemotherapy is in my future. You can all see that I've posted everything on my mind today, so you're all invited along for the ride. I'll be updating this from time to time as warranted - I'll always post a link back to the current blog when I do.

Finally...I apologize to everyone that's finding out via blog. I called family, friends, and those closest to me...but I couldn't get everyone. You're welcome to keep up with this too.


15 comments (Latest Comment: 01/24/2013 20:24:04 by TriSec)
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Comment by clintster on 07/18/2012 21:30:18
Tri, please know that my heart, thoughts, and prayers are with you. I have had other friends and family who have gone through their own battles with cancer, and it always shakes me to hear of another. Please take care of yourself and keep thinking of all those future events that you will see.

Comment by trojanrabbit on 07/18/2012 23:05:14
Words fail me at the moment, Tri.

Keeping you and your family in my thoughts always as you battle this.

Comment by Raine on 07/19/2012 00:45:07

I love you.
I love Maria.
I love Javi.

I need you all to know that.

I also know that you -- after all the years we have known each other -- have steadfastly and pragmatically met the challenges thrown in your path. I believe you will do it again.


Comment by Will in Chicago on 07/19/2012 00:51:59
TriSec, I am keeping you in my thoughts and prayers. Since you went in for the appendectomy, I have mentioned your name for the Mi Sheberiach prayer at temple.

Know that you and your family are loved by many. You are a part of this community and should know that we are all here for you.

Take care of yourself and let us know how we can support you. (If I was in Massachusetts already, I would perhaps offer to make a meal or two.)

Comment by BobR on 07/19/2012 02:26:23
"it grew into the colon wall but did not 'escape'."... that sounds promising to me. Like I said before - my mother had breast cancer on top of a stroke at 70 and survived. You can and will beat this.

Comment by TriSec on 07/25/2012 14:10:19
07/25/12 - UPDATE

Well, we went to the oncologist yesterday. The news was far better than I could have hoped. It turns out that the gentleman that cut me in the first place, Russell Nauta, was the best possible choice for the surgery. Not only is he the Department Head at Mt. Auburn, his secondary specialty is surgical oncology, and he usually does all the cancer surgeries for the hospital anyway.

So when he went in after my appendix, he saw what else was wrong in there and kept going. The oncologist categorized that as the "absolutely correct" surgery, and it likely spared me a re-visit to go remove additional lymph nodes.

She also stated that this had surgically cured me of said cancer.

But, there's more...because it made it to my lymph nodes, chemo is indicated. With surgery alone, there's about a 70% chance that I would have no recurrence in 5 years. With moderate chemotherapy, that rate improves to 85%.

So beginning on or about the first week of August, I'll be starting a six-month regimen of 48 hours on an infusion pump, then 2 weeks off. Chemo isn't what you think it is anymore....although no one can predict how I'll react to the therapy, the likelihood is that I will not experience too much discomfort or fatigue, and I might even keep my hair! I'll be getting a 3-drug cocktail, something called 5-FU (yeah, I know. ), Oxaliplatin, and the key, a massive vitamin dose called Leucovorin. The vitamins enhance the effectiveness of the 5-FU, and also help reduce the side effects.

There's still a bit of a bumpy road ahead, but it looks better than it did two weeks ago. And unlike the last time I wrote stuff, I'm cautiously optimistic that this could actually be a cure. Time will tell.

Comment by Raine on 07/25/2012 14:38:18
This is all very very good news.

Comment by BobR on 07/25/2012 15:00:08

Comment by trojanrabbit on 07/25/2012 15:30:31
Great news, Tri!

Comment by TriSec on 07/29/2012 14:46:58
07/29/12 - UPDATE

Good Morning.

I've posted on facebook that today is the last day of my old life. Tomorrow morning at 9am, I'm headed back to Mt. Auburn hospital to start the day with an outpatient procedure; I'm having a portacath placed. This will make all future treatments easier, as this is a semi-permanent "gateway" into my circulatory system. Instead of finding a vein and inserting a catheter every time, I'll have one built-in so they can just push a needle through and get going.

In the afternoon, I'll be heading upstairs to oncology for my first round of treatment. I still don't really know what to expect. Some family members and friends have been through this and didn't do too badly, but another friend who I trust implicitly (and is battling two cancers at this time has told me that it's going to suck. (I appreciate his honesty - he wouldn't lie to me.) Nobody can predict what the drugs are going to do to me, I'll have to wait and see.

It's not without a little apprehension that I'm walking through the door tomorrow. I did indeed have a meltdown Friday night. I"m supposed to be the strong one here taking care of the family, and now it feels like I'm failing at my mission. It's a curious thing with me, and of course I'm going to delve into Scouting for a moment.

There's this bit in the Scout Oath about the duties of a Scout....there's three:
Duty to God and Country
Duty to Others
Duty to Self.

I've made a career out of asking rank candidates which duty they think is most important. Of course, there's no wrong answer, but I have always thought "Duty to Others" is the most important, and I don't have to tell you that I have tried to live my life that way. A dear friend believes "Duty to Self" is the most important, his theory being that you have to take care of yourself first so you can discharge the other two duties.

It's this transition I'm finding difficult....my whole life, I have always looked out for everyone else and have not worried too much about myself. But now I have to.

So, my old life recedes into the past, hopefully only on hold for six months while I'm off to do battle...It's going to be a hard 6 months, but that will set us up for a better 2013 now, won't it?

Comment by TriSec on 07/31/2012 12:06:28
07/30/12 - UPDATE

Yesterday morning at 8:30, we went back to Mt. Auburn hospital. I was having my day procedure to have the portacath put in in the morning. Registration was a little slow, but the Interventional Radiology folks were wonderfully efficient to make up for it. Right on time (like a really useful engine), they wheeled me in to the surgical suite for the implant. I did not go under; they used a technique called "conscious sedation" which I found rather amusing. I would come in and out, and every time I was lucid, there had to be conversation with the nurse and needling the surgeon. (I'm a talkative drunk; this was not unlike that.)

In any case, no muss, no fuss, and about 90 minutes later I was back out in recovery. Maria came back in, and about an hour later they sent me up to oncology.

Over the next hour, we reviewed all the drugs they were going to give me, walked me through the care and feeding of my new implant (We are Borg) and I picked out a carrying case and got the instructions on how to use my pump.

Then the fun began. In the hospital, I got a dose of Oxalaplatin and Leucovorin, administered via infusion pump over the course of 2 and a half hours or so. This is the tedious part of treatment, but the Olympics are on, and I'm reading a 900-page Tom Clancy book at the moment, so this was manageable. We also ordered lunch, which arrived right when they pushed "start", so I was able to eat during the treatment without any difficulty.

Finally, it was all finished. I then got a bolus of the 5-FU drug, and they put the rest on the pump to be delivered over the next 46 hours. I'll be back in the hospital Friday afternoon to have it removed, and the port sealed up, then I'll be free and clear until August 15 when we do this all over again.

It was a little restless night, but I actually managed about 7 hours between the couch and my bed. I can cheerfully report this morning only two side effects.

The first one is weird - I was expecting nausea and appetite changes (OK, maybe not immediately), but I seem to be experiencing the opposite effect. You know how Wile E. Coyote jogs up to the roadrunner and all he can see is him on a plate looking roasted and delicious? Well, small dogs and children were looking like that on the way home yesterday.

And I have some temperature sensitivity whilst drinking, primarily cold. I can feel what is best described as an "electric surge" through my teeth when I drink anything, and I also have the illusion of difficulty swallowing, which I have been repeatedly assured is not real, but is a trick of the nerves, so intellectually at least I'm not worried about this one.

So it's ever onward. And I am pleased to report, so far, so good!

Comment by Will in Chicago on 07/31/2012 19:09:39
Hang in there, TriSec.

View the extra time that you have as an opportunity to reflect and prepare for next year. We are all pulling for you.

Comment by TriSec on 08/11/2012 01:58:00
08/10/12 - UPDATE

So, I've spent a bunch of time online reading about treatment, and statistics, and all kinds of other gnarly things. I don't know if I'm making myself crazy or not, but probably yes.

But then I ran across this report from the American Cancer Society. As one in the belly of the beast (or is it the beast in my belly?) I found it riveting, although your mileage may vary.

Like many things in my life, what I found in the report was a contrast of extremes...

I have cancer in the worst and the best location. Right ascending colon is the worst place for it to grow, because it can go for a very long time undetected. When it is found, it is often far advanced. (My own Stage III being a good example.) However....cancers on the right ascending colon have the highest survival rates. Better than traverse colon or left descending.

I'm part Asian/Pacific Islander. This racial category has the lowest occurence rate of all colon cancers....but once they're diagnosed and treated, we have the highest survival rate. Even better than "white" men.

Even without any further treatment, my five-year survival rate (with no recurrence) is now up to 71%. With the adjuvant therapy that I'm on, that's going to push me up above the 85% mark.

I have no doubt that there are going to be some bumps ahead...and maybe even a bona-fide ditch or two.

But I have to tell you that when I found that report Thursday afternoon.....let's just say that I'm glad my cube-mate was out so she couldn't see the tears of relief that I was a bit surprised to produce.

Two weeks ago, I wasn't sure I was going to win this thing....now I think I might just do it.

Comment by TriSec on 10/15/2012 18:04:32
10/15/12 - UPDATE

This past week, I finished treatment cycle #6.

It's been an interesting experience, that's for sure. I've not told anyone on the blog, but I've been experiencing bi-weekly bouts of depression now, usually on the Sunday evening of a treatment week. I just start feeling decent, and it's time to go back and poison myself some more. Ah, well. I'll get over this too, I'd guess.

I've tried to live as normally as possible during the last 3 months. I still work 2 jobs, and I've even been camping with the Boy Scouts recently. (I didn't injure anything in particular, but sleeping on the ground hurt!) I've even been back in a kayak for about 45 minutes, and have started lifting and moving things back at the store, so my surgical recovery seems to be complete.

I've recently had another follow-up with my doctor. So far, he's giving me a fairly clean bill of health. There's really nothing more to do on the cancer front; he's pretty confident that they did what's called 'running my bowel'ť during surgery, which is palpating the length of the thing to see if there's anymore growths in it. I will, of course, need an annual colonoscopy for the rest of my life now. Curiously, he's ordered a new round of cholesterol testing, which was drawn at the same time they pulled blood for my pre-chemo workup. I did not fast, so the results could be interesting.

I haven't seen my oncologist in a couple of weeks now; I'll take that as a good sign...if there,s nothing to really talk about, then the treatments must be utterly routine to my way of thinking. I have talked to the LICSW a few times...mostly about genetic testing and some of the other issues I've been having. But we're OK on that front.

Brother TriSec has also been in to be checked because of this. Good thing, too...he's four years younger than me and they found a pre-cancerous polyp in him that has been successfully removed. So I guess I took a bullet for my brother this summer. That's what older brothers do, I guess.

In any case...six treatments is halfway. I am now over the hump. There's plenty more coming, and the side effects are really starting to irritate me now. It's not because of the severity or duration; I think I've been truly blessed by how limited they actually have been. Nay, it's the neuropathy and the swallowing bit that I find most distressing. I can't be exposed to even cool temperatures while I'm on the juice...my hands go utterly nuts. It's like when your foot falls asleep; that 'pins and needles' feeling takes hours to recede once it's triggered. Drinking anything cool also triggers what I call 'Darth Vader Throat'. I'd suppose that's what a good Force-Choking feels like. It's not pleasant.

My weight has been erratic, but capturing all the data and putting it onto a line graph (hey, it's what I do) has settled a significant portion of my worries. It does fluctuate, but over the two-week treatment cycle, it does recover back to the starting point, so I'm actually not losing anything long-term.

So it's ever onward....Thanksgiving is going to suck this year, as it's a treatment week and I get rid of the pump on Thanksgiving Wednesday. The following two days are usually the worst of the cycle for me. But Christmas is on an off week...and my last treatment is scheduled for the day after New Year's, so maybe there will be something to celebrate in 2013.

Comment by TriSec on 01/24/2013 20:24:04
01/24/2013 - UPDATE

So, I thought I was supposed to feel better?

Today marks two weeks since I brought my infusion pump back to Mount Auburn Hospital for good. Technically, it’s the end of a treatment cycle. The good news is, I don’t have to go back this week for more poisoning.
Back on December 12, I was minding my own business getting infused with oxalaplatin (AKA “Satan’s Drool”) when a curious thing happened…I had a near-anaphylactic allergic reaction to it. My nursing staff was awesome; they pulled the lines out, got Benadryl and steroids into me, and averted the crisis. It was a near thing, and curiously I wasn’t the only patient to have an issue that day – one gentleman they actually did have to wheel down to the ER for help.

In any case…Doc told me this was “normal”, and most people only get 7 or 8 treatments of the stuff before that happens. I made it to #10, so I guess I was ahead of the game. They continued on that day with the regular fleurouracil (“5FU”), which I was told was probably the “most benign” of the chemo drugs.

Yeah, in a pig’s eye. Over the last month, side effects I didn’t have all during my treatment spiked up. First up was crushing fatigue…I honestly don’t know how I drove home on some days. And I’d go right upstairs and crash for a couple of hours after work….for days and days and days. Then I get the chemo-induced neuropathy. This is much like the temperature-induced hand and foot tingling I got with Satan’s Drool, only now it’s all the time.

I can no longer tell if my hands are hot or cold; I’ve lost all sensation in my fingertips, and things that require fine motor skills have become difficult to execute. On top of that, my vaunted tolerance for high temperatures has gone completely away….I can barely handle lukewarm water or cups of coffee…it now feels like my hands are on fire when I pick these things up.

Down below, I have it in both feet. Feels like they’re “asleep” all the time. I can barely walk most days, and have resorted to using a walking stick again for additional stability. I actually tripped over myself during a Scout training class about 2 weeks ago, which is when I decided there might be some trouble.

And yet, I’m still not sure this has done any good. That’s the big question I’m going to ask my doctor tomorrow….how can we tell it worked? I’m deathly afraid of metastasis; I want to know what I should be on the lookout for if it goes someplace else. I’m still a bit put off by some of the actuarial tables I’ve seen out there…apparently, I still only have a 60% chance of living 5 years with a cancer diagnosis….but then again Doc told me I was “surgically cured” back in June right when this all started.
Officially at least, I’m in remission now. Now it becomes a monitoring game, and the hope is technology will keep ahead of the disease and give me an early warning if something happens again.

Of course, none of this addresses my mental health. The nurses even told me there would be a let-down after treatment finished. The high of reaching the last day has been completely destroyed for me by the side effects that refuse to go away. In my mind, I should be feeling better….but I’m not. It actually feels like a setback, with all the issues such a thing entails.

In some ways, the neuropathy is worse than actually being on chemo. I knew there was a set piece when I would be done, and more importantly, when I would feel better. During the fall months, this was completely routine; I had it tracked to the day what was happening and when I thought I would start to improve. All of that changed when I had the reaction and they changed my regimen.

But on the plus side…I can have ice again! You have no idea. I spent five months sipping lukewarm water most days because of the temperature effects. Then during the month of December, water “tasted like chemo”. To have both of those effects disappear almost overnight has been a great relief.

So, I am off to my doctor tomorrow. I have a laundry list of things to ask and worry about. I still wonder sometimes if I’ll ever see my beloved Nova Scotia again, but I am at least hopeful that maybe I can get back there someday.