Merry and Bright

Hey everyone, just wanted to post an update since it's been a while (and Jim's been really busy.) The past few months have been good--just getting into our routine of work (Jim's been working almost this entire time!) and chemo sessions every other week.

Since his last CT scan in September was really good (the cancer has shrunk considerably), Jim got a little reprieve for Thanksgiving so he could enjoy turkey and stuffing with friends. We're hoping that in 2016 Jim can go down to once a month maintenance chemo. He'll get another scan in January, so we'll see how much more progress we've made.

There's still no end in sight, but this chemo has been targeted and focused, so other than some fatigue and taste bud changes, Jim's looking pretty normal and feeling pretty good! (No hair loss--a major plus!)

We're counting our blessings this holiday season and are looking forward to some downtime at the end of the year. There might be a big change happening soon, so stayed tuned for any announcements!

Hope you all have a good holiday season :-)

Good news

A couple of weeks ago I had a follow-up CT scan to check the progress of my treatments, and the news was good. Very good. In fact, my doctor was pretty much amazed that they've been so effective so quickly. The tumors had all shrunk considerably...even the primary tumor.

And he gave me permission to indulge in a drink or two each week. Trust me, I really relished the glass of beer that I had a few days later. It was first beer in months.

So things are good indeed. Thank you to all of you who've been checking in, sending words of support, and in some cases, sending me gifts. I appreciate all of it, though no need to send me stuff. Kind words and prayers are more than enough.

More soon!

Chemo, shmeemo..

Well, I had my fifth round of chemo this past week, and it really took me down more than a few notches in terms of fatigue. For the first time in a long time, getting up in the morning, and working through the day, was a challenge. I tried to rationalize my way out of admitting that it was chemo related. Maybe I just didn't get enough sleep, I told myself. But when I went in to get my portable chemo pump disconnected, the nurse reminded me that the side effects are usually cumulative. They will likely get more pronounced as I progress through the regimen. It's not quite "the medicine is worse than the disease," but it is a hard to face up to the fact that it might become the new normal.

But all that aside, the treatments are still proving to be amazingly helpful.

Thank you all for the kind words and good wishes. I recently heard from some of my old friends from Providian days, and it really helped to read their words of support.

I'll just keep taking it one day at a time.

Update

Hi Folks! It's been a while since the last post, so I wanted to give a quick update, and to thank all of you who have been offering support, even if it's just a quick check in to say hi. Also, a warm welcome to those who are new to Cancer Fashion.

The treatments have been going well. Chemo every two weeks. Very minimal side effects. So far, so good. I'm getting another CT scan next week, so after that I'll know a lot more about my progress -- keeping my fingers crossed for some good news!

It's about time.

One of the "gifts" of cancer -- and yes, as terrible as it is, cancer does come with certain gifts -- is that it forces you to reconsider your notions about time, in particular, your place in time, in the world, in the universe. Sounds like heady stuff, I know, but my first reaction to the news that I not only had cancer, but stage 4 cancer, with (statistically speaking) the likelihood of a much more abbreviated lifespan, well, let's just say, to borrow that old saying, it focuses the mind very effectively.

I will never forget the quaking feeling I felt when, sitting across from my oncologist during our first consultation, and after reviewing the facts of my case, and the extent to which my cancer had spread, he said, "...so, at least this won't kill you right away." Just what "right away" means remains to be seen. We keep telling ourselves that statistics are statistics, and people are people, and every case is different.

But still, that question, how much time? Will there be a point of no return, when the horizon shrinks and the hard choices step forward and demand to be reckoned with? I guess that point will come, and we'll know when we get there.

So over the last two months I've thought a lot about what time now means to me. I can't not think about it. It means a huge shift in values. It means making choices and meditating on things I never had to consider before.

A few days ago I had the honor of meeting former President Jimmy Carter. He was in town signing copies of his new book, A Full Life: Reflections at Ninety. (Okay, "meet" might be too generous a word; he looked up at me, flashed that famous smile, and said, as he did to everyone else in line, "Thank you for coming" as he quickly inscribed the title page and turned to face his next admirer.) Carter has always been a hero of mine. But now I find myself envious of him too: Nine decades of what has indeed been a very full life.

And there are more mundane considerations. Friends have been recommending movies and shows I just must see, trips we should make, etc. I've never watched an episode of Mad Men, The Wire, House of Cards, or Game of Thrones. I've never read a Harry Potter book or Hunger Games. It's not snobbery on my part; I'm sure I'd enjoy most of those recommendations. But I can barely get through the pile of The New York Review of Books and other magazines that have been stacking up.

There are shelves of books I want to read, many of which I had always put off for later, since they seem so daunting. But now "later"might get here sooner than I think. So what to do about Montaigne's Essays, Burton's Anatomy of Melancholy, Boswell's Life of Johnson? Each one of those is a doorstop of a book. And then there's Proust, the Shakespeare plays I haven't read...and on. Lately people are urging me to dive into Knausgaard's My Struggle, a multi-volume monument to the details of daily life. I'm sure reading it would be transcendent experience, but, sorry Karl, I just can't give you that much time. There are others in line ahead of you. If I can get to them in time.

Much as I love having my nose in a book, there's life to be lived. And I want to do it right. That means saying no to a lot of things I'd rather not give up. But being forced into this corner has made the experience of each day so much richer, and so much more precious. It's a gift I wouldn't have been given otherwise.

Waiting...

Yesterday we went back to the doctor's office to have my chemo pump removed, bringing my third round of chemo to an end and setting me free for another week or so. The procedure takes less than five minutes; we had to wait an hour and half for that less than five minutes. I can't blame them -- the nurses and staff there are wonderful people, and they were short-staffed and working very hard.

What can you do? Sometimes you have to just wait it out, and I guess I'll be doing a lot of that as we go forward with this crazy adventure called cancer.

One good thing is that I've had a lot more time to read, but yesterday, thinking that things would be humming along at the oncologist's office, I decided to not bring a the book I'd been reading, Harper Lee's To Kill a Mockingbird.

Once I realized we were in for a wait, I get a little testy (with myself). Why didn't I just grab the book on my way out the door? It wouldn't have killed me. I tried looking at my iPhone (emails, news, etc.) but that got old fast. And the assortment of magazines in the waiting room (some People, Entertainment Weekly, along with assorted, more specialized ones like Cancer Today, etc.) seemed  pawed over and uninspiring.

I happened to glance over at an older gentleman sitting across from me, who was happily occupied with a small yellowed paperback. I was envious. But I was also curious about what he was reading. Whenever I see someone engrossed in a book at a cafe, or on the train, or wherever, I always try to see what they're reading, and, of course, make judgements about them based on their book of choice.

At one point the man got up to get a drink from the water cooler and left his book cover-up on his chair. I glanced over at the title: To Kill a Mockingbird. Somehow that made it all better. I resisted the urge to get his attention and tell him I was reading it too - I mean, it would probably have come across as a little dorky. I suppose the lesson is, we have more in common with each other than we realize. "We're in this together" has become a very consoling thought for me lately.

Before I sign off, a huge thank you to Jason's cousin Shirley L., who stopped over yesterday to visit, bearing the gift of sushi, and an amazingly pretty card with a painting of two owls, a quote from Emerson ("Our strength grows out of our weaknesses.") and a list of cancer support groups that she took the time to research, copy out by hand, and share with me and Jason. Thank you Shirley!

About this cancer "fashion" thing...

Okay, I'll get to the "fashion" thing in a minute. But first, and always first, I want to begin with gratitude. Gratitude for the many family and friends who have sent us kind, healing, supportive, and heartfelt words ever since this crazy chapter began.

I even have co-workers from Wells Fargo, people who (and they'd be the first to admit it) I don't know well, but who by virtue of having worked with me, even in passing, have felt compelled to send me encouragement, and even gifts, and offers to help.

To all of you, I say again, your words are the greatest gift you can give me. Your offers to help, the books and gifts you've sent, are of course wonderful. You've been remarkably generous, in fact, but in the end, it's knowing that you're keeping me in your heart that really matters. So thank you.

And now about that fashion thing. As Jason has mentioned, the name of this blog was more or less arbitrary, a bit of a joke, and how can you expect two young gay gents to not have fashion on their minds? Even if those long-dreaded mushroom clouds were to start blooming on the horizon, we'd probably pause to pick out some smart duds for the apocalypse. Who wants to look gray and dingy in the ruins of civilization? The phrase of the day is, as you might recall, Keep Calm and Carry On. The Queen, and the queens, know a thing or two about that.

So yes, I've had a remarkably good response to the treatments and my last three weeks have been amazingly good. But I still have some weight to gain back (and fortunately my appetite has returned with a vengeance). But, alas, I'm feeling a bit skeletal and scare-crowish, so I've set my tight t-shirts aside in favor of looser, long-sleeve, collared camisas (that's Spanish for shirt, I believe). For the recovering cancer patient on the go, they're the only way to travel. If you've gotta drape something on your emaciated torso, I highly recommend a nice stylish, casual, untucked long-sleeve. They have the added advantage of helping hide those unsightly chemo pump tubes. So there you have it.

I promise to be better about posting updates here. Thank you all, again, for your kindness -- Jason and I couldn't get through this without your love.

P.S. A very special thanks to Greg H. and Rick F. You know why. We love you guys!

I'm okay, you're okay

Something that came up last week was how the summary of Jim's cancer seemed pretty dire when seen all at once. Yes, it's been a roller coaster ride since Memorial Day weekend, but we've had ups and downs during that time. And life has continued--we've both been working, cleaning house, going grocery shopping, running errands, etc.

This blog was meant to keep family and friends updated on the big news. But neither of us feels comfortable broadcasting all the personal day-to-day details that round out this whole experience. Yes, there have sometimes been delays here and there. But our doctors and nurses have other patients to tend to, so we understand that they can't always get back to us immediately. (In my line of work, some clients need to be reminded that I work on other projects and that the world doesn't revolve around them; the ones who do understand this always get brownie points in my book.) Our lives haven't stopped, and neither should anyone else's.

Good things have happened over the past couple of weeks too, which has made us less panicky:

• Jim's actually gotten better after the first couple rounds of chemo (as the doctors and nurse practitioners originally anticipated.)
• Many of his body functions have returned to normal.
• We actually went out to dinner in the neighborhood this week for the first time since his diagnosis.
• We're taking walks in the neighborhood and building up Jim's strength again.

Now that he's feeling better, we're getting ready to gather some information and pursue a second opinion. We're grateful to have friends who are medical professionals or who have lived through cancer themselves tell us that we can set the pace ourselves. We can move forward in a way that doesn't have to stress us out, whenever we feel more stable and ready. What once felt like a death sentence is now feeling like maybe-this-is-how-it's-going-to-be-for-a-while.

So it's time to get back to normal...or at least the "new normal" that we're settling into these days.

Thank you...but

I want the first words of this post to be "thank you" -- because ever since I learned about my cancer and started sharing the news with family and friends, I've been overwhelmed by the love, support, and the healing words that all of you have been sending my way.

I should say, "our" way, because Jason and I have nothing but gratitude for everything you've been doing, whether that's the offer to make food, or the dish you dropped off at our front door, or the candy (you know who you are), or the rides you've provided to and from my many appointments, or simply the offer to help in any way you can. Just knowing you're here for us has helped me heal, and has helped both of us feel a little less lost.

But -- like that wise man Pee Wee Herman once said, "Tell me about your big 'but'" -- we thought it might be helpful to clarify a couple of things -- call it our "but" list:

• The food offers have been so generous, but if we accepted them all, we'd be buried in food. For one thing, we have a small "European style" refrigerator, essentially a mini-fridge, so we can only fit so much in at any given time. Plus, frankly, we're not that challenged in preparing our meals, so while we appreciate the offers, we're pretty good on that front. If you truly feel compelled to bring something over, please check in with us before you do. I have to avoid meat and cheese, in general, so that eliminates a whole range of cuisine for me (I hope that changes soon!). 
• Many of you have offered to help with rides to appointments, but you've been so generous with those, that we need some help managing who does what when. So we've set up a calendar of my various appointments, and if you want to offer a ride, you can use the calendar to sign up. As I type this, I'm still in awe of the fact that because so many of you are lining up to help, we actually need a calendar to keep track of it. 
• Your words of support have been loving, heartfelt, and amazingly comforting, but there's one thing that we ask you to be mindful of: please don't tell us that we have to do something. We appreciate the concern, and we know that all of this comes from good, loving intentions, but it's not always easy to respond to the texts and emails and voicemails, and if your message is insistent, urging us that "you must do this thing!" or "take this supplement now!", the effect is anything but comforting. It creates stress. We've been collecting huge amounts of information and advice, links to articles, the names of various resources and experts, diet tips, etc., and we appreciate it, but we need to work through it in our own time and make our own decisions about the best course of action. 

We hope you'll take all of this in the spirit that it's offered -- one of thankfulness and appreciation -- and that you'll respect where we are right now.

We are blessed to have you in our lives.

It's been so long...

Hi friends and family,

So here's what you may have missed previously on Cancer/Fashion:

• Late April (just before his birthday) Jim started to feel a dull abdominal pain on his left side.
• After a couple of weeks of different antibiotics, Jim went in for a CT scan to see what might be going on.
• On May 21, our GP (general practitioner) told Jim the results of the CT scan seemed to indicate he might have colon cancer that spread to his liver. Jim's routine colonoscopy was scheduled for the following week--we weren't able to do it any sooner to confirm whether the scan really did reveal cancer.
• On May 29, the colonoscopy (and biopsy) confirmed a large tumor.
• The following week, June 5, we had an initial meeting with an oncologist who thinks Jim has Stage IV colon cancer. There was a slim chance the multiple growths on/around his liver were enlarged lymph nodes or something other than tumors, so we scheduled a liver biopsy.
• On June 8, we met with a surgeon who scheduled an appointment to remove the large tumor in Jim's colon.
• The liver biopsy on June 11 seemed to go well, but Jim became noticeably jaundiced and was in a lot of pain. A follow up ER visit provided a bunch of pain killers and not many answers, until we ran into the doctor who performed Jim's colonoscopy (he happened to be on call at the ER the day we went.) He recognized Jim and did some digging around--he came back and let us know the liver biopsy confirmed cancer and that the ER blood work showed that Jim's liver was not functioning well (hence the jaundice.)
• At our scheduled oncologist's appointment the following week, we were told Jim was nearing liver failure and needed to be checked into the hospital ASAP for immediate chemotherapy. He was at the hospital all weekend for 48 hours of chemo. The scheduled surgery for his colon tumor was cancelled. Jim had a port installed into an artery (for future chemo) instead.
• For the next week, Jim dealt with many sleepless nights, ongoing pain, and some significant weight loss.

And that's what you missed over the last six (or so) weeks.

We've set up this blog as a way to stay in touch with family and friends so you can know the latest about Jim's cancer treatment as well as his ongoing health updates. This past July 4th weekend, Jim's oldest brother Bernie came out to visit, hang out, help, and keep Jim entertained and well-fed (with some of his favorite cookies, no less ;-) While we were sitting around chatting, we brainstormed potential blog names. "Cancer Fashion" was a tongue-in-cheek way to poke fun at Jim's current weight loss and jaundiced appearance. If you know Jim and his brand of comedy, you'll appreciate this title.

We had a great weekend, and Jim's energy levels have been up ever since. At first we were worried that having a guest would tire him out, but Bernie's visit really energized Jim.

This week we're going in for chemo Round 2. Not sure if Jim will experience the same ups and downs with pain and energy loss as before, but we'll see.

Stay tuned...more soon!