Tuesday, October 15, 2013

Group

Just got back from tonight's cancer support group session.  I went just to share my thoughts on our friend who passed on Sunday.  It was a small group, mostly comprising the few people who, like myself, have been going for years and have known our friend since she first started comping.  It was good, but her absence was notable.  She was kind of the anchor of our group.  There's a memorial service a next week from now.

After group, I reached out to a person who I had been put in touch with by the facilitator of our group, another guy who is just starting his own cancer journey.  He's starting down almost the exact same road I started down (same diagnosis, same pre-surgery treatment), so we chatted for about an hour and compared notes.  He's off to good start, but has a long road ahead of him.  I wish him the best.

So, one person loses their battle and another springs up in their place.  It's never-ending, isn't it?  Wave after wave of people being diagnosed.  Even if every sporting event and TV show had athletes and actors wearing ribbons, wristbands and whatever else of every color mapped to every kind of cancer, and a portion of every product sold went to some kind of cancer screening, prevention and research efforts -- people would still get cancer and people would still die from it.  I bet it'd drop off quite a bit, but people would still get cancer and people would still die from it.  And as soon as we all take our foot off the screening/prevention/research pedal, cancer rates would shoot back up.

You know what it reminds me of?  Stoats in New Zealand. 

When I was traveling in New Zealand I trekked the Milford Track in Fjordlands National Park (an area of amazing natural beauty).  It's a multi-day hike and each night you get to stay at nice huts along the way.  Well, one of the nights one of the park rangers came in to tell us about stoats and stoat trapping.  Stoats are little weasel-like animals that the government takes great pains to continually trap as the stoats would otherwise just completely devastate the local bird population.  Why are the stoats trapped?  Why don't the birds just fly away?  Well, Wikipedia says it better than I could:

The rabbit as introduced as a food and game animal [in New Zealand[ by European settlers and by the 1870s, it was becoming a serious threat to the newly developed farming economy. Farmers began demanding the introduction of mustelids (including stoats) to control the rabbit plague. Warnings about the dangers to bird life from stoats were given by scientists in New Zealand and Britain, including the New Zealand ornithologist Walter Buller.  The warnings were ignored and stoats began to be introduced from Britain in the 1880s, then, within six years, drastic declines in bird populations were noticed.
New Zealand has a high proportion of ground-nesting and flightless birds, due to the long geographical isolation and a lack of mammal predators. The native birds have evolved to fill the niche that is otherwise filled by mammals. Stoats are the greatest threat to these ground-nesting and hole-nesting birds since they have very little means of escaping predation. In addition to birds, stoats eat insects and mice. During times of a "beech mast", when the southern beeches produce a far greater than normal amount of seed, the stoat population undergoes changes in predation behaviour. With high beech-seed numbers, rats and mice become more plentiful; this increase in prey encourages stoat breeding. The higher stoat numbers, then reduce the rodent population and the stoats then prey on birds.  For instance, the endangered takahe's wild population dropped by a third between 2006 and 2007, after a stoat plague triggered by the 2005–06 mast wiped out more than half the takahe in untrapped areas.
Point being, the government continually traps the stoats in order to stem the time.  There's no way they can trap all of the stoats, of course, but they keep at it.  And in regions surrounded by a perimeter where stoats are trapped, the birds do better.  If the trapping stops, the birds get annihilated.  So, the stoats are cancer, the birds are people and the traps are cancer prevention, screening and research efforts.  Trapping of the stoats doesn't stop the problem (and it never will), but it does help and the alternative would be letting the stoats run amok.

OK, maybe it's not the best metaphor, but it works for me.  

I'm a bit wiped.  Time to hit it.

Sunday, October 13, 2013

A Passing

I stopped by my friend's house to drop off a card earlier this afternoon.  Took me most of the day to figure out what I wanted to say.  I had planned to just drop the card in the mailbox and go because I didn't want to intrude -- I knew she had been spending most of her time resting and I figured her close family would be with her.  But, their mailbox is right next to the door (of course), so her husband saw me walk up and invited me in.  I sat next to her, said Hello, but not much more.  She'd just been given a shot of morphine, so she was out -- I doubt she heard me.  After that, I spent a few minutes talking to her family, some of whom remembered me from her 50th birthday party just two years earlier, expressed my condolences, and then left.

I headed straight to a bar and had a few beers while trying to process the visit.  It was a bit raw.

And just a few minutes ago, I heard that she passed.  Less than three hours after I visited.

I need to go for a walk.



Saturday, October 12, 2013

OK, OK -- one more

Since I'm on the topic, here's a worthy blog entry from Belle Piazza (a fellow Colondar model) sharing her thoughts on "Life with Chemo".  Belle just lives up the road from me, but we've only met once -- in Washington D.C. for the Fight Colorectal Cancer's Call on Congress back in March.  She's a great person and, as you'll see below, I tremendous writer.  Hopefully some people facing a "life with chemo" diagnosis find this, or this is forwarded on to them.

From http://www.colonclub.com/2013/09/living-with-chemo-for-life/

walk each other home

by Belle Piazza
“I’m going to run your CEA again to check on it, it’s risen quite a bit.”

“How much did it jump?” I ask my oncologist.
“It’s 70” (up from 19 at the beginning of the summer) Don’t get hung up on a number he tells me, but I know better and I can feel the tears welling up in my eyes. Increases in my CEA have always corresponded with growth of my cancer.

I frequently hear from friends “I don’t know how you do it?” To which I think to myself, “I don’t either”. It would certainly be nice if there were a handbook for cancer patients telling us how to manage the myriad of emotional challenges we go through. I don’t see the challenges any different based on your staging of 1, 2, 3 or 4; but rather they are amplified as your number gets higher. Not to minimize those dealing with stages 1, 2 or 3; the feelings of fear and anxiety are every bit as real and overwhelming as they are for those of us with stage 4. It’s just that when you hit stage 4 (and there is no stage 5 to progress to or through), you’re pushed further yet.

When I was first diagnosed my doctors thought I was a stage 1; possibly stage 2. My surgeon always suspected stage 3; but she couldn’t find a diagnostic test to confirm her suspicions; which turned out to be right. After surgery I was deemed cancer free and almost made it 3 years before the spots on my lungs were confirmed to be a recurrence of my original rectal cancer. When I heard the words “recurrence”, “chemo for life” and the dreaded “3 years left” my knees buckled and I fell to the floor. I had to have a nurse call a friend to give me a ride home. And then – silence.

“Tell me where you want to go” my friend said as we drove to the drug store to refill my Lorazepam script. “We’ll go wherever you want – we’ll get a room at the resort and go get massages, we’ll go to the bar – anything – where to?” But again, silence. I just wanted to go home. Caring friends all willing to talk surrounded me – but I was at a complete loss for words. I just wanted to stare at the walls and pretend none of this was happening.

I’ve almost come to the end of “3 years left” and I’m still here. While not cured, and with my cancer slowly progressing, I’m cautiously optimistic that I still have a year or two left. And while I’m woefully unskilled to write an instruction manual on how to live with stage 4 cancer, I’ll try to offer some help and advice for those who have the misfortune of following in my footsteps.

When I first joined The Colon Club there were a handful of members I looked up to. Bradyr, Justsing and of course Gaelen. There was Jessica, the young mother who fought so valiantly to live for her newborn daughter. There was Starbuck who just wanted to be a twenty something woman experiencing all life has to offer. Bill Llib – father, husband, Boy Scout troop leader, friend. All fought, all died. But it was their courage and determination that gave me strength – and still does. If they can do this, then so can I; even if “this” meant dying. We all need heroes. None of these beautiful people considered themselves heroes or ever wanted to be heroes. But I needed heroes to light the way for me and this is the role they played.

For those with stage 1, 2 or 3 you have hope – hope that the disease is gone from your body forever; hope that someday your life will return to what it was pre-cancer. Knowing that life will never be the same, but hope that it can still be good. I have hope too, but hope takes on a different meaning when you’re stage 4, on chemo for life and running out of options.

I hope that in the end my pain will be managed and when I do become incapacitated that it won’t last for long. I hope I’m not confined to a hospital bed for an extended period of time – that my passing is quick. I hope that my children and husband don’t suffer needlessly and endlessly. I hope that people remember me as a person and not a person who had cancer. I hope and I pray for strength. And somewhere in a deep dark pocket of my mind, I hope for a cure. It’s crazy, I know – but even those of us looking at grim futures still have a glimmer of hope that a miracle will take place. And really, is that any crazier than people who religiously purchase lottery tickets every week – convinced that one day their number will come up? Hope takes on many varied forms.

While living with stage 4 isn’t where any of us want to be or choose to be – life can still be enjoyed – tremendously – in between chemo treatments and side effects. And while we often feel we are the only people in the world suffering, there is tremendous pain in this world caused by things other than cancer. Hunger, abuse, disease, poverty, oppression – the list goes on. Sometimes we all need a reality check and to acknowledge that many people suffer – daily – to a greater extent than we do. When my surgeon first told me that my pathology report showed cancer in 27 of the 38 lymph nodes she had removed, I completely fell apart and asked her “how could this be any worse?” – to which she softly replied, “there is always someone worse off than you are”.

And so it goes. Chemo weekly. Scans quarterly; more frequent when trying a new chemo to see if it might work. Managing the myriad of side effects and assaults my body takes from the treatment designed to extend my life. Still, in between it all, there are many opportunities to live life. Granted I don’t live life the way I would have had cancer never entered my world. I’ve been detoured down roads I never would have otherwise traveled. Some of the roads take me to scary places, like the dark forest in The Wizard of Oz with mysterious creatures lurking in the shadows ready to attack. Some of the places have flying monkey’s trying to pull me apart and frightening voices screeching in my head. But other roads take me to wondrous places – like The Emerald City or the beautiful poppy fields. Last year one of the roads even took me to Kansas City!

Whatever road you find yourself on, always look ahead. Identify heroes to help guide you, walk with you and show you the way. While hope may take on different forms, always have hope. Live life to the fullest extent possible. Surround yourself with people who support you, love you and inspire you. Life is short and for some of us it will be shorter than others. Coming to terms with that doesn’t happen over night, but in time, we adjust to our new reality. It’s not what we wanted, it’s not what we chose, but it’s the cards we’ve been dealt. Sometimes we just have to put on our poker face and make the best of a lousy hand. It doesn’t mean the game is over, it just means it’s a little more challenging.
When my kids were little and it was time for a play date to come to an end, I always gave them the “5 minutes” heads up to let them know it was almost time to go. They acknowledged the 5-minute warning but when 5 minutes was up and it was time to go, my son would usually have a melt down. He didn’t want to leave the party – he wanted to stay and have fun. At times I have the guilty feeling of behaving like a two year old myself. I know that soon it will be my turn to leave the party and go home. It will be time to go – plain and simple. I’ll kick and scream and fight and throw a tantrum and do all I can to stay just a little longer. But even two year olds tire of this routine and eventually succumb to their destiny, pack up their toys and go home.

When I was in my 20’s I was an avid hiker, backpacker and long distance cyclist. I taught aerobics for a couple of years and I went through a period where I was obsessed with West Coast Swing and Country Western Dancing. It was always something. Friends who were less active marveled at how I could decide on a moments notice that it was a good time to join a group of friends and backpack through The Grand Canyon. What they didn’t realize was that I didn’t achieve that fitness level over night – it took many months of training and ongoing work to maintain that fitness level. The benefits were great, but it took commitment and hard work.

I like to think of stage 4 survivors in the same light. I didn’t reach this level of acceptance or coping overnight. I could behave like a two year old and have a complete melt down every time I get bad test results; but really, that just takes too much energy, which I don’t have. So I cry a bit, spend some time alone soaking it all up and processing it and then I do my best to move on. Some days are harder than others. It’s like hiking through the Grand Canyon. You find yourself halfway down the trail, tired, hot, sweaty and running low on water. You can sit there and cry and hope a donkey passes your way without a rider – or you can pick yourself up, dust yourself off and begin putting one foot in front of the other towards the river – where you can take off your shoes, rinse the dust off your face and replenish your water supply. Since donkeys don’t travel on most of the trails we hiked, I just kept putting one foot in front of the other until I reached my journeys end. I hope I can find the strength now that I found back then – on the trails and on the remote bike rides. And I hope that when I reach my final destination I find the relief, the peace and the comfort that each of my former travels blessed me with.

One last one for today

So, the reason why I'm blogging today is that I'm in a cancer frame of mind.  It's the weekend.  It's Saturday.  It's the evening.  And I should be out enjoying myself with my friends.  Heck, I even had a date tonight.  But, I just learned that someone from my colorectal cancer support group, someone who has been battling Stage IV colorectal cancer for years and whose treatment has recently shifted from curative to hospice/palliative care, doesn't have much time left (like, days) and it's taken all of the wind out of my sails.  She's the third person I've gotten to know since I started my cancer journey who will have lost their battle with this disease (the first one I've gotten to know in person), and in each case, I've been startled at how quickly the end comes once things start going south.

She's been battling Stage IV colorectal cancer for several years.  Years.  It's a terrible diagnosis and treatment can be a bitch.  Not everyone who gets Stage IV loses their battle -- it's not necessarily a death sentence, but the survival rate is not good.  I think it's something like 20%.  While there are some amazing drugs out there, from what I've seen, the drugs you take for Stage IV take a greater toll on a person.  Not just because they're more aggressive, but because you're on them until you beat the disease, which if you never do win, is for the rest of your life, which can be years.  I'll say it again.  Years.

My treatment was a laid-out regiment of fixed duration.  Pre-surgery radiation/chemo to shrink the tumor, surgery to remove the tumor, then more chemo to make sure any bits of the tumor left behind were sufficiently nuked.  But, when it's Stage IV,  maybe you don't have the option of removing the tumors because there's so many of them.  Then, you're stuck with just the drugs (you can only be radiated for so long -- there's a maximum dose your body can handle and then that's it). And from what I've seen, in the losing cases, it's drug A, then drug B, then drug C -- moving from one drug to the next as each one ultimately proves no longer effective.  Each one buys you a little more time, but eventually you move to the next one.  The drug roster starts with the approved drugs.  Once you've run through those you move to the experimental drugs.  You start with the drugs that are involved in big studies, and your med onc may have be able to be a part of the study pretty easily, but if that doesn't work, then you may be taken off of the study.  Then you look for other, usually smaller studies.  You keep searching and searching and then eventually there'll be no more studies that you qualify for.  You may not have exactly the type of cancer the study is meant to treat, or they may consider you just too far along.

The drugs do help -- they prolong your life.  Without them, you could pass away within months of being diagnosed with Stage IV cancer.  But, it's years of neverending treatment.  I had a difficult time getting through just a few months of post-surgery chemo that left me feeling like total shit.  Knowing that there was an end to the journey, that there was light at the end of tunnel is what kept me motivated.  I could count down the days until I was done.  But chemo without end?  That's hell.  Mentally, it'd lay waste to me.  I simply can't fathom putting up with that kind of grind.  Those who have to deal with it truly are cancer warriors in my mind.

So, I'm spending the evening thinking of my friend.  She's not taking visitors, given her currently state, and it's likely I won't see her again, but I do have the opportunity to write her a letter and drop off a card.  In fact, I've staring at a blank card for the last hour.  I'm a little overwhelmed. 

Update

Saw my med onc yesterday.  Standard three-month checkup.  Mostly so that he could do a blood draw to measure my carcinoembryonic antigen (CEA) levels. 
What's CEA?  According to Wikipedia:
CEA is a glycosyl phosphatidyl inositol (GPI) cell surface anchored glycoprotein whose specialized sialofucosylated glycoforms serve as functional colon carcinoma L-selectin and E-selectin ligands, which may be critical to the metastatic dissemination of colon carcinoma cells.
I don't understand it either.  But, CEA levels can indicate a recurrence of cancer in colorectal cancer survivors, so that's why we've been keeping a close eye on it.
My CEA levels have been stellar since treatment ended, and I'm not expecting anything different this time.  We also set up a time for my year four scans.  Hear that?  Year FOUR!  That means only ONE MORE YEAR until I reach the infamous five-year mark when you're considered to be "in the clear".  Ok, it doesn't mean that you're totally in the clear.  You can, and many people do, have recurrences after the five year mark, but the odds of getting a recurrence is low -- something like less than 2%.  But still, it's a big deal. 
Been toying around with various ideas with what to do and how to celebrate my five year cancer free anniversary.  Train for an Ironman?  Climb Aconcagua?  Hike the PCT?  Quit my job and take an extended hiatus from the working world?  Who knows.  It doesn't need to be something epic, dinner with friends is celebration enough.
So while my cancer health markers are good, a few of the non-cancer health markers aren't so hot.  I've packed on a good chunk of weight and a few of the heart-healthy markers (cholesterol, triglycerides) are in the red.  So, more motivation to get out an exercise. 

A Memorial

I mentioned the passing of Shari Jahner, a rectal cancer warrior whose blog I followed closely and developed pretty much a global following due to her incredibly well-written, inspirational and humorous blog.  She passed away last November and I visited her blog today to see if there had been any activity.  There was.  Her husband posted that they had purchased a memorial bench in her honor to be placed on the Minnesota Fair Grounds.  I thought this was very cool, and touching.  My sister lives just outside of the twin cities, and when I visit her next, I plan to seek this out.

http://imsorryforcursing.blogspot.com/2013/10/minnesota-state-fair-2013.html?showComment=1381626889528#c6260536817036584431













Vacation and Irrigation

Got back from vacation a little over two weeks ago.  Two weeks in Scotland.  I didn't do a very good job of keeping up my travel blog.  Only made one entry actually -- just wasn't into banging out lengthy blog entries on a cell phone or a tablet.  I need a keyboard for that.  So, I'll probably get around to making some post-trip travel blog entries in a couple of a days.  Or maybe not.

But, the trip was great.  Mostly, it was just great to get away from work for two weeks and be completely untethered.  No work email.  No work calls.  No work anything.  Nowadays, many professional jobs spill over into people's evenings, weekends and vacations.  Some people I know say that's just part of moving up the career ladder and some I think even wear it as a badge of pride.  Not me.  Work will be there when I get back and I certainly don't delude myself into thinking that I'm so irreplaceable or indispensable that the rest of my team can't cover for me while I'm away and that Intel will grind to halt while I'm away.  Nobody says on their death bed "I wished I had worked more", and I'm fortunate to have an employer that values work/life balance enough that they can let people truly get away from the grind for a little bit.

Still, I wish I had more time away.  Don't we all!

--

Traveling with an ostomy went smoothly, for the most part.  I've traveled enough domestically that going through airport security and being on flights are old hat.  Even the 9 1/2 hour flight from Seattle to London was no big deal.  I just made sure I irrigated right before I headed to the Portland airport.  I know I get at least 30 "output-free" hours after irrigating.  So, by the time I got to Edinburgh, I was ready to irrigate again.  But still, traveling always mucks things up.  My first full day in Scotland, a few hours after irrigating, had a completely unexpected late return.  That just so doesn't happen.  In fact, it so doesn't happen that I didn't have the extra supplies with me.  I usually them in my book bag at work, but I didn't have them in the small backpack I was carrying around.  This was a complete bummer as I had to walk *all* the way back to the apartment where I was staying to spend the 2 minutes to swap out appliances, and then walk *all* the way back to the town center.  Argh.  But, reall, small taters.

What really bummed me out was several days later on the Isle of Skye.  I was staying at the Hillstone Lodge (an awesome little B&B - check it out - http://www.hillstonelodge.com/), and during the night I had some unexpected output during the night (I had irrigated that day -- should have been to make it that morning) and the appliance totally failed.  It stained everything and I felt just terrible about it.  Yes, hotels, motels and B&Bs I'm sure are totally used to all sorts of messes being made in the rooms, but still ... This place was so nice that I was really embarrassed about it.  I even tried to wash everything out myself, but it was hopeless.

I few days later I emailed the owners, explained my medical situation that had caused the mess, and offered to reimburse them for any extra cleaning or replacement expenses.  They were incredibly kind in their response.  They said that they understood and they were able to get everything out just fine -- normal procedure for them.  That was a relief.

So, traveling rocks the stoma boat a bit.  I didn't have anything like Montezuma's revenge.  I mean, it's Scotland after all, but the disruptions to the body clock and changes in eating patterns cause problems, so I just have to be better prepared.

But that was it as far as problems.  I don't know how much of a test run this was for some of the extended outdoor adventures I have on my list (hiking the Pacific Coast Trail, climbing Aconcagua, trekking in Nepal), but it was nice to travel internationally again.  It was an adventure.  It was fun.  It was me getting back to doing what I enjoy.

Which is Good.