August... where did the time go?

Well, I'll tell you...

Thanks a great deal to Jody and my Mom taking good care of me, the Avastin backlash was broken. I met with Dr. Shih one more time and was doing muuuuch better, just in time to take a little trip to Cape Cod.

Our friend's sister was getting married (congratulations and thanks, Robbie and Jeanine!) and Jody and I had been planning to spend a long weekend in Falmouth to enjoy the beach and the wedding. That went really really well for me despite my initial ambivalence about New England and anxiety over my situation. I found that as long as I ate whole foods instead of things that were too heavily processed, I felt pretty good. I wasn't running marathons by any stretch, but I did okay. Getting home by myself was a challenge, but I lived. Jody stayed on for a few days more to visit with Sarah (Jeanine's older sister).

Sadly though, Jody's flight home was abutted by the death of her grandmother. We repacked and drove home to PA for the funeral which was a tender time. Grammy had lived 93 vibrant years and the time taken remembering and honoring her was well spent.

Back here at home I'm leaning into the wind that is Xeloda, once again. I'd had a visit with Dr. Lee while Jody was still on the Cape to discuss the analysis of my most recent CT scan (of the 17th). The known spots have grown a little and have multiplied in the interim of Avastin alone so that trial seems to have failed. She and I also discussed recommendations made by Dr. Hwang, a research oncologist at Georgetown Univeristy Hospital whom I'd met back on the 19th, right before the trip.

Dr. Hwang had seen me to answer my questions about possibly participating in a clinical trial applying a developmental colo-rectal cancer vaccine as a therapy. Unfrotunately, the trial had already closed, but since it was a therapy in concert with chemo and my CEA rising was steering me back to chemo, why not check it out?

He did send me home with details of another trial but one using a different chemotherapy and that may or may not be one that has had good results with my particular genetic goulash. Dr. Lee ordered the DNA test for K-RAS to see if my case might fit and better help me decide, but there are other factors to consider. I'd have to move my care to Georgetown and that would mean routine trips into the city for drips and tests and such; not very appealing. The traffic sucks pretty much all day and the insult is complete only having to pay for parking. Bleagh.

Still, the K-RAS test might also indicate that another chemotherapy could help me more. I don't really have to do much but wait for the test results.

In the meantime, my CEA is rising and the lesions are trying to grow and spread. Rather than mix things up too much at once, I elected to go back on Xeloda alone mostly because the side effects are pretty well known in me and I've responded well to it several times in the past. I know it will increase my fatigue, but I also know I can avoid dairy and heavily processed/preserved/fatty foods to head off the worst of the effects. I think this next batch will go a lot easier than before.

If the K-RAS test comes back indicating I can go for the trial or that another chemo might be more successful, great. While that is going on, I'd like to try to define what state I might have to reach before surgery to remove the lesions would be worth my while. I'm also going to lobby Dr. Lee to have biopsies taken again; to this date, only my liver has ever been needled and it came back negative. If I'm taking treatment for metastatic disease, I think it should be verified.

Some part of me chuckles at the thought that an HMO would have probably balked at any treatment I've been getting until those biopsies told them they had to pay... ;)

back from the gastrointerologist

For those whom haven't seen my facebook updates, I've been struggling to beat some very unusual diarrhoea that the usual fluids and bland diet weren't knocking out. Even a weeks' worth of Cipro didn't break it. I've missed a lot of work and been very very depressed and unhappy. Life really sucked.

Past tense.

I don't want to claim victory just yet but the past two days have been a lot better. I paid a visit to my gastrointerologist last week who sent me homw with test vials to fill up. Ahem.

I met with him again today and learned all of the tests came back negative. It's been three weeks since my last Avastin drip. With the improvement I've experienced as of yesterday, we're both pretty confident the Avastin was the problem.

That puts me in a tough spot though. The Avastin was supposed to be a maintenance therapy; something to avoid lots more chemo. Thus, my next visit with the onc will probably mean chemo pills. Again. :(

While I'm glad this seems to be untangled, I'm still on a rope. I don't know if I can get a smaller dose of Avastin or possibly a stiffer shot of chemo, but it's sure looking like I'll be hypermiling whatever therapy I go to next; gas, coast, gas, coast...

I have a CT scan on Monday to see how the Avastin alone measured up, but it's going to have been nearly four weeks since I had to cut it off. The mets may have had a chance to grow in that time and negate the time I spent off chemo. On the flip side though, that scan will give me fresh images to show the research doctor I'm meeting with next Wednesday down at Georgetown University...

They've got a study going on right now applying an experimental colo-rectal cancer vaccine as a therapy coincident with chemo. I might qualify and, frankly, if I have to go back on chemo anyway, why not participate?

thematic ending

The theme for this months' posts, if you haven't already guessed, has been "How much can Life possibly suck?"

To close out the month on a thematic note, today's visit with Other Dr. Lee was not terribly heart warming.

I learned little more than what the current "standard of care" is for a patient like me and that what comes next promises to be more irritating and still not promise a cure. I don't know if I feel more naive or misled but the certainty of never ever getting rid of this **** is crushing.

What little more I did learn was that there may be another study out there I might qualify for. This one is at Georgetown... I just got off the phone with them now relaying some preliminary details about where I'm at in this mess. We'll see.

Meanwhile, Regular Dr. Lee consented to letting me skip the next Avastin drips in an effort to get back onto an even keel. It has been murder eating bland foods, feeling no better from the antibiotic, and hardly sleeping needing to be within a few yards of a bathroom around the clock. Depression is drowning me but there is nothing any therapist is going to say to me or sit there and listen to that changes the reality of living like this. Sucks does not begin to describe life like this.

Tune in next month. Maybe August will be rainbows and unicorns?

desperation

Can you grasp at straws in an ordered, controlled manner?

If you can, I think I'm learning how... the hard way. ;)

Let's be honest for a moment. My ability to endure pain and discomfort has grown dramatically throughout this gauntlet, but at the expense of my sensitivity to others as well as Jody's patience and capacity to forgive. The 'perfect storm' that struck a few weeks ago thundered through both of us leaving two hearts nearly broken. What's worse is as the storm passed, the floods came and I dearly wish I were only being metaphorical.

In the last ten days I have had major league diarrhoea that has kept me from work more than half of the time. I'd thought I'd eaten something bad though I had been abundantly careful in choosing what to eat and drink. After a week I visited my gp who now has me taking Cipro to kill off a possible infection. It sure feels like an infection though halfway through the antibiotic now, nothing has changed. In fact, today things seem to be worse... the day after my most recent Avastin drip.

So I look at the Avastin website and see diarrhoea is a possible side effect. Great.

an a guy get a break? Or do I say stop to the Avastin? I've already stopped eating a number of things to avoid upset and the top of the list now is dairy; being stripped of lactase is a side effect of Xeloda. The Avastin was supposed to be a test to see if we could keep the lesions from growing (we will scan on Aug 21st to see) but that gameplan has left me feeling cheated... cheated out of ever being healthy.

I'm tired of being sick; too sick for Cyberknife but not sick enough for surgery. I'm tired of taking chemo but not enough to kill the lesions off before making me feel I'd be better off dead (insert old John Cusack movie clip here). I am God-damned tired of the burning, itcching, blindingly painful hemorroids I get with loose bowels that never seem to firm up. Right now, at least the diarrhoea passes quickly (like lightning) though our washer and dryer have been getting a workout.

I find myself rationalizing all manner of things. They range from stopping treatment so I can salvage some quality of life even at a shorter quantity, all the way to looking for a rectum transplant or some biomechincal device to control my bowel movements. I've missed the ileostomy I had to wear baggies for through the early part of last year. I've found a surgical procedure called a BCIR pouch that would do away with my large bowel in favor of an internal ileostomy of sorts that I'd have to empty with a tube. It sounds like a miracle... it doesn't hurt, people who have them eat whatever they want, they swim, play hockey and football, women with them can have babies, all kinds of great sounding stuff. If I come across any testimonial of patients who have it and race cars...

I'm adding it to the list of things to look into more because having questions is a weird form of hope for me. There is still something out there that might be worth it.

I'm also seeing another oncologist next week; a guy my oncology clinicians have heard of and has a good rep. The irony is -his- name is also Dr. Lee so there may be a little confusion of who's who coming up soon. ;)

I'm not going to feed him what I want to hear. I know I'd like to be more agressive and I want someone to say to me they think they have a plan that kills the disease... not just keep it in check as more and more of my life passes me by.

some explanation

The downside to sharing this way is things still come across very black and white even with the advent of emoticons; body language only so well represented through clever keystrokes.

You guys see me use this one a lot. ;) It's my way of cocking my head and winking to add emphasis to a point I'm making (writing). Unfortunately, I don't have any emoticons at the ready to convey the frustration of the perfect storm that struck this past week.

I reeeeally don't want to go into it here but let me assure everyone I'm not stopping my treatment. The thought crossed my mind and I've dwelt on it before because the plain fact is, I am utterly mortified of what seems to be coming to pass; a life lived in yo-yo cycles of chemo constantly stepping to one side and never getting anywhere. Or worse... slowly being picked apart, piece by piece. I already feel like less of a person, less of myself. That angers me more than I may have let on.

And though I know what matters is how I behave in response to feeling angry, I lose that battle with my self control because the Reality I often see ahead of me is one where there is no hope of ever breaking out. I feel trapped except to stop dodging the inevitable. I'm sorry for saying it, but it is the truth.

This is with me all the time and I know it salts what I say and do. That last blog was barely the tip of the iceberg.

Just do me a favor and pray for me and Jody right now. We need it.

it gets worse

So, 'last post was a downer. Sorry, but this one is too. Feel free to stop reading now.

My CEA is back up. That's a very good indication I'm heading back to chemo and there is nothing I can do about it. I can pray, I can think positive thoughts, I can sacrifice a goat... won't change a thing. :(

Crossed with all of the other crap happening in my life, I am seriously considering stopping treatment. I hate to say it but I honestly do not know what I am still fighting for. This is NOT even close to worth it. :'(

Crap on a stick.

As posted on facebook...

I just got an invoice for outstanding leftover payments to my oncologist. Though there's a lot from Kaiser, they're a tiny fraction of the pocket portion Aetna has left me with. It appears to be just the first quarter of the year... and may allude to thousand-dollar copays, per visit, for the Avastin... that I get every other week... three moths worth aren't on this invoice...

Attack of the Clones is on television, sucking.

The NetApp at work is expressing that same firmware bug from back when I first started; don't know how to/haven't had a chance to fix it.

And it's now raining so I can't take my doggies to the park to let any one of us blow off some steam.

To borrow a meme, FFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU!!!!!!!!