Friday, February 26, 2010

Day 5

Finished up my first week of radiation this morning. I'm finally used to waking up early enough to get to hospital in time for my 7:10A appointment. It's a piece of cake, really. Just lie down, let the staff position you, and sit back and let the machine do it's stuff. I've borrowed some guided imagery CDs specifically for fighting cancer, chemotherapy and radiation therapy that I listen to while I'm getting treatment. They're meditations and affirmations that you can listen to help your body feel itself (mind-body connection type stuff). Some of it is a bit hokey, but hey, I'm buying into it - anything that increases the chance of a positive outcome. Hell, I'd run naked through downtown Portland if a doctor told me it would do any good.

As far as side effects, they kicked in pretty quickly but my body has seemed to have adjusted. Had some moments Tues-Thurs where I was either consistently lightly nauseous, or had acutes waves of it where I felt like I had to barf right there and then. Plus, breakfast a few days again blew through me like a freight train. I've taken only a couple anti-nauseau pills (prochloperazine and lorazepam and the A-N drugs I have at the moment) and they're doing the trick. The nauseau goes away, as does consciousness. I've taken some involuntary naps the past few days here at work after taking the pills.

But today, I feel great. I think a lot of it has to do with having caught up on sleep last night. Here's hoping for a nauseau-free day.

I think the treatment is working. The two weeks leading up to treatment, I was starting to feel some discomfort/pressure in the area where the tumor is, which was a bit disconcerting, but that feeling has seemed to subside. I'm taking it as a positive sign.

Monday, February 22, 2010

Day 1 - Let the Healing Begin

They say a journey of a thousand miles begins with a single step. Yesterday, thirty-two days after receiving the news that I officially had cancer, I took that single step by beginning treatment. And, by taking that single step, it became much more real today that I'm battling cancer. It became pretty real on Friday when they put the port in, but any remaining doubts that this was real were put to rest when they hooked up the chemo pump.

The procedure on Friday to install the port was routine (to the extent that going in for surgery is routine). Friday was the fourth time in my life I've been put under, the third time in the past two years, the second time since my fateful physical on January 15. I realized that every time I've been put under was to address a health issue either direct or indirectly related to my behind. My ass has proven to be, well, a major pain in the ass.

Oh, and they kicked me out of the clinical trial. Apparently, the flavor of radiation that I'm getting (IMRT) is too new for the study. They don't want that to skew the results. I wasn't about to give up the more advanced radiation approach so that I could be in the study. It's more important to me to reduce the collateral damage to the nearby organs than to get access to a drug whose added benefit is unknown.

Like I said, the procedure to put in the port was straightforward. One moment the anesthesiologist is telling me that he's about to put something into my IV that will relax me, and the next moment I'm in post-op with a port in my chest. The port is just under the skin just below my left clavicle and extends to one of the main veins (I didn't ask which one - I really didn't feel the need to know all of the gory details). The port took some getting used to once I started moving around, but by the end of the weekend, I hardly noticed it.

But now that there's a rather large infusional pump (I thought it'd be something the size of a pager, but it's more like an older cell phone - I'm carrying it around in a fanny pack) attached to the port, the port is definitely more noticeable - both physically and in my mind. Again, it makes this whole thing real. When I walked into the room where the chemo is being delivered, I was looking for an open chair next to somehow roughly my age. Nobody. That made my heart sunk a bit. I hated being the youngest one there. Just underscored the fact that me getting cancer at this age is outside the norm.

But, I quickly got over it once I left the building. I'm glad we're starting treatment and that the healing has begun. I don't feel a thing with the pump attached to the port, or with the active delivery of drugs. The pump, however, does remind me that it's there every few minutes when it gives a whir and delivers another measure of drugs.

Glad to finally be in a routine.

Wednesday, February 17, 2010

Bank Deposit



So, today I made my third "deposit" at the fertility clinic. And, I have one more last and final deposit scheduled for Friday. Why so many trips? Well, they're telling me that for each kid you want to have, you should enough of your stuff banked for four vials. So, I'm shooting for eight vials worth. Deposit #1 was good for two vials, and deposit #2 was good for 1 1/4. That's almost one kid. Friday is it because you need two days between donations and I start treatment on Monday. (They don't want you to father a child or donate while your reproductive organs are getting blasted with radiation. Wise advice.). A little scary to think that once treatment starts, whatever is in deep freeze is likely to be all the reproductive material on Earth that will be available to produce mini-Dougs.


Of course, that's if you believe the doctors, and, quite frankly, the advice hasn't been the most consistent. I've seen four radiation oncologist. Rad onc #1 said "you'll be sterile, no doubt about it. Sorry." Rad onc #2 said "Sterile? Maybe temporarily, but that will go away. Nothing to worry about." Rad once #3 said the same thing as #1 and doctor #4 said "There's no guarantee that you'll wind up sterile, but plan on it. It's likely that's what's going to happen." Methinks doctors # 1, 3 and 4 need to have a talk with #2.

By opening the bank account, I'm not saying that I've decided that I absolutely want kids, I'm just not willing to say "No" at this point. I see it as insurance. If I wind up sterile but regain my virility later, great. Maybe I can sell my sperm to couples who want tall, smart, quasi-athletic kids who may have a genetic predisposition to rectal cancer.) If I decide later to not have kids, fine. Just don't want to close the door quite yet.

-----

What else ... Oh, I spoke with my local surgeon about what the Mayo Clinic's surgical prognosis. He said pretty much I thought he would say. He's holding to his line that, if the tumor shrinks, sphincter-saving surgery is possible. He quoted some studies that made it sound like the local recurrence rate is quite low (4-5% out of several hundred people who had LARs, and that 90%+ were glad they had the LAR done instead of having to get a bag). But, he said that the decision is ultimately up to me, and that we don't even know if there will be a decision that gets to be made. If the tumor doesn't respond to chemo/radiation, then I'm getting the APR. If the tumor does shrink then I have some time (~10 weeks between end of treatment and surgery) to look into things. So, I'm putting off this decision for now. I did seek input from other colon cancer patients and survivors on a great on-line forum called "The Colon Club". I've gotten some great feedback. A lot of people seem to be very happy with the bag because they don't have to worry about a "leaky bottom" (as one person put it, "between pooping in your pants and pooping in a bag, and I've done both, I'll choose pooping in a bag any day"), and because it gave them the best chance at curing this. Right now, my gut is telling me the same thing.

But, that's a decision for a later. I need to focus on chemo and radiation right now. I realized today (Wed.) that I hadn't heard back from my clinical trial nurse about which "arm" of the clinical trial I was selected to be in. With only two business days before treatment starts, if I wound up in a group that required a chest catheter, we need to schedule surgery to put that in. Pronto. Time's running out. So, I called the nurse and asked what's up. She said that I did indeed wind up in one of the two groups that needs a port (rats ... was hoping for the pill option) and that I will be getting oxaliplatin in addition to the 5-FU (was kinda hoping for that option). They're going to get back to me on when the surgery will be. It's a bummer because tomorrow night I'm supposed to be going out with some co-workers for drinks in anticipation of starting treatment. At first, I thought that might require me having to completely abstain, but after a panicked call to my physician assistant friend, she assured me that a few drinks are fine - just don't overdo it.

I can do that.

Overall, I'm enjoying my last relatively "normal" week for quite awhile. I'm taking advantage of the normalcy to get some stuff done at work (it's actually quite a nice diversion) and to set up my apartment for the upcoming journey. Since I'll be stuck in my apartment off and on, I'm buying a few toys to keep me occupied (plasma TV, Playstation 3, DVR, etc.) Also buying some extra furniture to accomodate guests, and make other changes to make create a more comfortable environment.

That's it for now. Will post when after "catheter" surgery ... (which could be tom'w for all I know ...)



Sunday, February 14, 2010

Waiting for Treatment to Begin

Back in Portland. I have all my ducks in a row for starting chemo and radiation, which begins on the 22nd. I'm eager to start treatment (the tumor isn't exactly waiting around) but it takes time for the radiation team to set up everything up after a patient has their simulation session. I had that session last Wednesday. It involved another CT scan to nail down exactly where the tumor is. With that information, the team does a bunch of simulations to configure the radiation machine to deliver a waveform that matches the shape of the tumor. This approach is called IMRT (intensity modulated radiation therapy) and is pretty cool. It'll help reduce the chances of side effects in the other sensitive organs that are right next to the large intestine. I also received a few permanent tattoos on my hips and abdomen (I asked the nurse if she could do an eagle, or maybe a mountain climber, but all I got was a few dots). I was a little concerned about IMRT after the New York Times ran a series of article exposing how IMRT can go horribly wrong (the timing of that article couldn't have been any worse - I had been diagnosed just two days earlier), but they answered all my safety questions to my satisfaction.

For chemo, I enrolled in a clinical trial. The trial looks at whether adding a drug (oxaliplatin) to the standard pre-surgery chemo drug (5-FU) improves the overall outcome. Oxaliplatin is used as part of the post-surgery chemo, so I'm going to get it anyways. I don't know if I'll get the oxaliplatin + 5-FU combination or not - it's decided randomly. If not, I get just the 5-FU, which is the current pre-surgery standard of care protocol. Oxaliplatin hasn't proved to be any kind of miracle wonder drug for rectal cancer, so if I don't get that drug, it won't bother me. The study is also looking at whether or not 5-FU delivered by continuous infusion via a pump 24/7 is better than just taking a 5-FU pill every day. Again, I don't know which option I'll get - it's random. I'm hoping for the pill because it does not require getting a port put in. A port is a catheter they would put in my chest and run to veins to allow for easy delivering of the chemo drugs. The external pump would just attach to the port. Port, catheter, call it what you want - the idea of it still makes my skin crawl. It'd be another surgery to put that in.

I haven't had a chance to speak with my Portland surgeon about the Mayo clinic's recommendations for surgery. I'm waiting for him to receive and review the Mayo records before we chat. I still think about this discrepancy of opinion quite a bit. I have this feeling that the Portland surgeon is going to say that there is no solid data on what happens if the go for the LAR (sphincter saved) vs. doing the APR (sphincter removed), but that yeah, Mayo is likely right in that there's likely an increased chance of cancer locally recurring if they go for the LAR. In that case, I would likely go for the APR, believe it or not. I view it like insurance. The premium is having to deal with a "bag" every day, and the major catastrophe that the insurance covers is having to pay for locally recurrent c ancer. If I was 85 and knocking on death's door, I'd be more inclined to push things, but being only 40, I'm pretty risk averse when it comes to my long term health. If I have to live with a bag to live for another 50 years, I'll do that.

One last thing worth mentioning - engineers should never get cancer, or any other major disease. The uncertainty in treatment effectiveness is frustrating. I mean, in engineering, if I put a voltage across a resistor, I get a current. If I do that a second time, I get the same current. If i do it a thousand more times, I will, more or less, still get the same current. It's a predictable outcome. And, I like predictability. This was one of the things that drove me nuts in law school - the unpredictability of legal outcomes. It still bothers me. The outcome is never certain. You make the same argument to 100 judges or 100 juries, you're not going to get the same answer 100 times. I think medicine is worse. Every person is different, so what may work for one person may not work for another. So, with every possible outcome or side effect, there's a likelihood that comes with it. For me, the statistics give me a general idea of how my body will respond, but nobody can predict what's going to happen. I could suffer a side effect that only 1 in 1,000 suffer. We just don't know. When drives me even more crazy, is when there's no study out there to support a doctor's recommendations, and that she's just going on her experience of practice.

I continue to be moved by everyone's offers and words of support. They are all tremendously appreciated. I feel very fortunate to have such great family and friends.

Saturday, February 6, 2010

Mayo


Had a busy two days at the Mayo Clinic. I'm pretty much done and should be returning to Portland Monday evening, two days earlier than I expected. This visit isn't the first time I've been to Rochester, MN. I lived here for about a year in the early '90s while I was working for IBM as an engineering intern. While I have good memories of my time here, mostly involving the people I met (several of whom are still very good friends), Rochester itself did not leave any particular impression on me. When I left to attend graduate school, I never intended to return. I couldn't help but think of this as the shuttle van from the airport rolled into downtown, and that, had you told me back then that 17 years later I would be returning to get a second opinion on my own cancer diagnosis, I never would have believed you. But, here I am.


I was originally scheduled to be here for 3-5 days. After a lot of rescheduling, they were able to get in to see everyone I wanted to see, which was a nice surprise. All I have left is a wrap-up meeting on Monday afternoon. I met with a colorectal surgeon, medical and radiation oncologists, and a few nurse practitioners. I also had a pelvic MRI to make sure that a few other organs were not in play. Everyone was incredibly professional, helpful, answered all my questions, and were very frank with me. Their prognosis, which was pretty much uniform, is that I need to have an abdominoperineal resection (APR), which will leave me with an ostomy bag. My surgeon in Portland told me that this was a possibilty but left me the hope that, depending on how much the tumor responded to chemo and radiation, this could be avoided. As most of my research and questions were focused on what could be done to shrink the tumor in order to avoid me having "the bag", this news was a let down.

What the Mayo physicians explained to me was that no matter how much the tumor shrinks, you want to remove all of the tissue that has been touched by the tumor. This is the best way to prevent the cancer from ever coming back. It's their view that there is no guarantee that there are no cancer cells in tissue where the tumor once was, regardless of what tests say. Leaving any such tissue in my body would increase the likelihhod of the cancer coming back locally. In the words of both the Portland and Mayo docs, this would be "a nightmare". So, they said don't let the fear of winding up with a colostomy bag keep you from making the right choice concerning my health. This explanation made total sense to me, and I'm behind any course of action that increases my chances of survival.

The surgeon laid out some alternative options that are considered "experimental". However, I'm not too interested in tracking down someone who would agree to do such a procedure only to wind up with struggling with a leaky bottom for two years, and then having an APR done anyways. We did not discuss the "bionic butt" option (http://www.telegraph.co.uk/news/newstopics/howaboutthat/6560971/Man-uses-remote-to-control-his-bionic-bottom.html).


So, that was tough news to accept. When I first read through the "colorectal cancer and you" brochures given to me by my Portland doctor, that was the one option I wanted to avoid at all costs. But, my whole notion of what I'm willing to accept has shifted quite a bit in the past few weeks. We met with a stoma nurse yesterday and she showed me what these damn bags look like, how they work, etc. The answered some of my questions, but didn't really leave me feeling any better about things. If that's what happens, I won't welcome it, but I will deal with it. I'd rather know that this is the expected outcome now, rather than needlessly hoping for the next three months for something more and to be disappointed after surgery.


But, I'm not done talking to surgeons quite yet. I want to talk to my Portland surgeon to hear why he thought I had a chance at a "sphincter saving surgery" (the technical term). And, I may ask another surgeon at another prominent cancer institute (maybe M.D. Anderson, Sloan-Kettering) to look over my charts and tell me what he thinks remotely. I think my surgeon in Portland is excellent, but was surprised to hear from the Mayo physician that they so soundly disagree with his prognosis. I hardly think he's the kind of doctor who would lead a patient along, so he must have some rational explanation as to why he would tell me what he did. I'm eager to hear what he has to say.


My questions regarding surgery will not keep me from starting my chemo and radiation therapy. I'm pretty sure I'll be having that done in Portland and should be starting next week. I'm likely going to participate in a clinical research trial for the chemo portion. For radiation, I'm going to go with a doctor that was trained by one of the doctors I met here, and who was already referred to me by another doctor in Portland.


So, I'm glad I made the trip out here, even if the prognosis I received isn't what I wanted to hear. Having some of the uncertainty removed from what's going to happen does provide some welcome relief, so I'll take that. I'll post next once treatment has started.