Monday, December 31, 2012

Out with the old...

Nearly at the end of this very long year. It has been quite the experience. I started the year with doctors and ended that way too. Saw my oncologist this morning and we can't really talk chemotherapy possibilities until after a new PET scan. He said I look great and everything sounds great, and he'll see me again after the next scan to talk about what's next. They'll be calling me Wednesday with the date for it. So... still in recovery and feeling good mode.

Heading out of town for a Prohibition themed party/ball tonight. Ringing in the New Year dressed to the nines and surrounded by a bunch of fun people and friends. Making the best of all the good days. Currently reading a book by Augusten Burroughs and one chapter really resonated with me about how to live life in the present and not be trapped by the past. I can't really shrink the whole chapter down here, but my favorite part of it was this bit:
     "Sometimes, a particular trauma may be the largest thing we have ever experienced. So we kind of move into it, make it our home. Because there's nothing in our lives on the scale of that loss or that trauma. So, you need a larger life. Something that can successfully compete with your past."

Live a larger life. Indeed.

I've been doing that most of this year and plan on continuing to do so. I highly recommend it to everyone. Make the most of each day, be there for every moment, and revel in the joy of everything. It's hard to get highjacked by the past or worries or the 'shoulds' of the world when you are really *there* for each moment. When you are busy being present, you suddenly don't feel too busy or harried. Things seem to fall into place easier. And when they don't, you just let it go and trust that the moments for those things will come.

I hope that all of you can look back at this year and see all the joy and love that came your way. And I wish you all larger lives in the next year to come. I'll see you there.

Friday, December 28, 2012

Assiversary

Happy Anniversary Cancer.

It has been one whole year together today and I have a lot of thoughts to share with you. Let's get the worst out first. You suck, and I am not glad that you came into my life. Things were going along pretty swimmingly before you showed up on my doorstep. This relationship is truly the hardest one I've ever had to deal with, and I've had some doozies over the years. You have brought me pain and suffering the likes of which I've never experienced before.

You have changed the landscape of my body and mind. Every time I look in a mirror I see the lines, the gray hairs, the scars you have wrought upon my body. You came into my life, into my body, clawed at my heart and took away parts of me that can never be replaced. I can never be the same after you. Begrudgingly I will say that not all the changes are for the worst.

I am still learning how to deal with you. I have never asked you why, why you decided to pick me... it's too hard of a question and too rhetorical for you to create an answer. I have shed more tears over you than any other, either for love or loss. You have become my constant companion. There are few moments in which you do not invade and try to cast your pall. You are heavy to carry, and you give nothing back to me for the effort. I would say you are the most selfish thing I know, but I recognize that you are unaware of your faults. However, that doesn't make you any less of a bastard and a heartless bitch.

But somehow, despite all these harsh words and criticisms, I would like to thank you as well. For showing me that I am strong enough to live inside your shadow. Often I am even strong enough to step outside of it. Thank you for allowing me to fully see how absolutely blessed I am with the love of friends and family. And for allowing me what time you will to spend with them. You even helped to deepen and strengthen some of those relationships. You have helped me clear psychological issues. And taught me how to live without shoulds, and truly within each moment. You have made me more aware of the greatness of every day and every moment. I didn't want to learn these lessons this way. Though I am impressed by the speed under your tutelage.

I'm not sure I've quite fully accepted you in my life. I rail and curse at you too often to know. But I've accepted that you are here, and it's either that or let you stalk me for the rest of my days. I do ask that you please be gentler with me in the next year of our life together. Also... I'm ready for some space, a little breathing room, the occasional day or week without you. To be brutally honest, I'd like to be able to tell you to fuck off. But it wouldn't do any good. I know I will never be rid of you. That you do not leave easily or without struggle. And even if you go, the fear of you will linger in the corners of my psyche forever.

Where do we go from here? You have had the lead in this dance. Maybe you can take a backseat for a while. Let me pick the next song. Something a little more uptempo with limited minor chords. I have a lot I want to get done in the years to come, and your aggressive and negative attitude does not help us to move forward. Maybe we can take a break, just be friends for a while? Starting over is a myth borne in youthful emotionality, I know better. But I don't know if I can manage the intensity of this relationship anymore. It is time for more change. I hope you understand.

Sincerely,
Me

Thursday, December 27, 2012

Planning Ahead

I'm not really one for journaling every little detail of my typically mundane days. Which sometimes puts me at a loss of what to blog about. There's been nothing very exciting happening around here for about a week, and no new medical news to chat about. I've mostly been home working on sewing and embroidery projects. My very, very pregnant sister and I decided to wait to do family Christmas after the baby is born. Which made the holiday pretty quiet and not very eventful. Spent part of it with friends but the rest mostly relaxing and keeping out of all the hubbub.

It feels like I haven't been out and about much lately. But I know that will change very quickly. I will be out of town twice in the next week's time. Then lots of traveling about for the next couple of weeks. My nephew is scheduled to arrive on January 4, and of course I'll be up with my sister for that day. Several trips with friends and a week helping with baby to follow. My 2013 starts off pretty busy and will be full of people. Sounds like a good start to me.

I just picked up a book on estate planning and have started reading up. We put the major paperwork (wills, power of attorney, medical release, patient advocate) together before my first surgery in the early part of the year. But I want to know what else should be taken care of for the long run as well (fingers crossed for the long run). And there is no time like the present to get started and get it all behind me. It is kind of frustrating to me to have to be worrying about this stuff right now though. Not quite 40 and it just doesn't seem right. I vacillated between depressed and angry the first day I started reading. But I'm trying to keep the perspective of due diligence and objectivity. A well prepared adult should have all this set up and be knowledgeable before it is needed. So that is what I am doing... or at least that is what I tell myself. Either way, ugh.

First trip out of the house starts tomorrow morning. Heading to Ann Arbor to see the Les Mis movie with several friends and stay the night to boot. Nothing like surrounding yourself with some of your favorite people to chase away the blues.

Sunday, December 23, 2012

Good Day Sunshine

Yesterday was the winter solstice, longest night of the year, first official day of winter. It was blustery and cold. Today the sun dominated the sky, almost like it was reminding me of its gentle return as the days slowly get longer. All the cold of winter is yet to come though. The hats and scarves are out and there is a blanket piled in every corner of the house where I might sit. Knit handwarmer mittens are constant attire. Ah well, 'tis the season and all. Only three and a half months until it starts warming up again. I've also been fighting off a cold for days, but my coughs last night and today make it sound like a losing battle.

The diet and nutrition books I want are currently checked out of the library. I have already started making shifts in my meals, back to my pre-diagnosis very healthy diet with some tweaks toward vegan. There is no good scientific data yet that this will make much of a difference in staving off recurrence or tumor growth rate. There are websites and books written by all sorts of folks (including some doctors) that say it will help, but there is no certainty or data to back it up. Regardless, it can't hurt and I enjoy these foods so I'm not feeling all that deprived. And I'm not concerned about splurging occasionally. Food and its enjoyment is important to me, so I'll treat myself when needed.

One downside is that I've already dropped a couple of pounds since making the changes over the last week and a half. I'm pretty near my personal "bottom" for a still-healthy weight, so I'm keeping a close eye on the scale. I'm looking forward to returning to regular work outs after a couple of more weeks when I no longer have to worry about weight limitations or continued soreness from the last surgery. It will be good to put on some muscle weight. It's been many months since I have done any regular exercise, so I will be starting slow and letting my body tell me how far to go.

Still another week to go before my next appointment with my oncologist. I suspect he will set me up for another CT or PET scan. Looking forward to finding out what the next step is in this. All these months and I am still struggling with my relationship with patience. Might be a bit easier if she weren't so gosh darned slow.

Wednesday, December 19, 2012

Step right up...

Honestly it has been a bit of an emotional roller coaster for me over the last couple of weeks. Not a big one, more like the mini roller coasters they set up for the small children. No huge drops, but rather an undulating course with shallower dips and valleys. The potential 'end' for this, or at least the end for now, has really thrown me for a loop. I've been very focused on the 'now' for much of this year. And suddenly I'm thinking of the future and am faced with upcoming months that possibly do not have a pre-scheduled plan. It feels like I'm standing in front of a dark maw, teeming with uncertainty, fear and the unknown. I've been sitting with fear in this time, coming to terms with it and relegating it to just one of the many emotions available on the shelf. I stepped off the ride a couple of days ago and am now moving to a more proactive period.

This excerpt from Gilda Radner's autobiography is a good way to share the sense of the mental space I had been occupying lately:
     "It is so hard for us little human beings to accept this deal that we get. It's really crazy, isn't it? We get to live, then we have to die. What we put into every moment is all we have. You can drug yourself to death or you can smoke yourself to death or eat yourself to death, or you can do everything right and be healthy and then get hit by a car. Life is so great, such a neat thing, and yet all during it we have to face death, which can make you nuts and depressed. It's such an act of optimism to get up every day and get through a day and enjoy it and laugh and do all that without thinking about death. What spirit human beings have! It is a pretty cheesy deal - all the pleasures of life, and then death. I think some people just can't take the variables; they just can't take the deal - that is why they drink themselves silly or hide away or become afraid of everything. Sometimes I feel like I couldn't take the deal - it was just too much. Cancer brought life and death up close."

One of the things that has weighed deeply on my mind lately is the decision about whether or not to return to work. Before I left in March we put everything into place with the assumption that in about a year or so I would be coming back. I've kept in general touch with the office and more closely with some of my co-workers. It's been a difficult decision making process, as well as emotional. About a week and a half ago I finally got to it and immediately knew that it was the correct decision and felt a small weight lifted.

*drumroll please* I won't be going back. I decided that I would rather act as if I had less time than more. I want to continue to make the most of every day that comes, to have the freedom of time and opportunity, and get to filling up that passport. I was lucky enough to be granted social security disability and that allows me an opportunity that may not come again. I'm planning on spending several weeks off and on helping my sister out with my new nephew while she is on maternity leave the first two months of the year. And once I find out whether continued treatment is on or off the table, I can start making plans for travel.

I am looking at this like early retirement. More time for my hobbies and crafts, leisure time for seeing friends as often as I'd like, time for the daily exercise and nutrition that will give me many years of health. It is exciting and unnerving too. An entirely new phase and way of living. Another "new normal" to adjust to. Adaptation has always been one of my strengths. I hope to handle this transition with as much aplomb as everything else that has been thrown at me in this last year.

Monday, December 17, 2012

Eating Right is Sorta Bullshit

Yep, that's what I sincerely think anymore. I'll be spending some of my time in the next couple of weeks starting to seriously research nutrition and how it relates to cancer. I've already read some and skimmed other materials that tell me I was eating a pretty good 'anti-cancer' diet before we found out that I had it. Whole grains, lots of varied vegetables, berries, very low meat, minimal sugar, etc. I'd been eating this well and exercising three to six days a week for about three solid years. I have found out, however, that cancer can take 5-8 years to grow a tumor the size of mine. So by the time I got my dietary act together, it might have been too late to reverse something that was already in my system. It is also possible (and we will never know one way or the other) that I slowed things down in the last couple of years.

All I know now is that the odds are not in my favor for my particular type of cancer. Of course when caught early it is not that big of a deal. But we all know that stage four is far from early. There are plenty of studies that show diet and lifestyle can make a big difference in keeping recurrence at bay. So I'm going to study up and make whatever changes seem best. I suspect I will be going back to something similar to my pre-diagnosis diet (as mentioned above). Except likely leaning more vegan and with lots of other little tweaks. And it looks like I might be permanently switching from coffee and tea to all green tea. *Sigh* I love tea, even green tea, but I will miss daily coffee.

This is one thing I can do to take control of my situation. It may not be a lot, or it might make a huge difference. But it means that I am being proactive every day in my recovery and continued health. And it has been pointed out to me that this is something I am good at: food, nutrition, research. This I can do with confidence, and happily. It feels awfully good to bring my strengths to bear in this.

Thursday, December 13, 2012

Just Day to Day

Nothing exciting going on around here the last few days. Although my space heater did try to catch the living room rug on fire. Luckily I saw it just as it started to spark (wiring going bad) and unplugged it before anything happened. Also lucky that we'll be able to fix it for just a couple of bucks worth of fresh wires. It's a lot easier to keep the heat down in the house when I've got the space heater for wherever I'm hanging out. I'm still a wimp when it comes to cold tolerance. Give me the heat of summer and sunny days anytime.

Still dealing with lots of tenderness in the torso, especially on the left side. It took the right side about four or five weeks to start feeling a lot better. So I've got a couple more weeks to go before I should expect the same from the other. All these little aches and pains are making me feel a lot closer to forty than I did a year ago.

Been starting some more research into my cancer and what I can do myself (diet, exercise, etc.) that will keep me healthy for a long time to come. Will be making some more shifts in my diet soon. Fortunately don't have to make any large wholesale changes, because for the most part I maintain pretty good nutrition and enjoy all the "anti-cancer" foods like fresh veggies, fruits and whole grains. Though I have some reservations about the diet connection which I will talk about more soon.

Tuesday, December 11, 2012

The Waiting Game

Been busy since my last post and surgery with recovery and some travel. Though the initial recovery from this second surgery went quicker than the first, there has been what seems like a lot of residual aches and pains. I've determined that the pain meds aren't quite so evil, and at the end of a day when all the tenderness is high and other muscles have started to ache, it's absolutely the best choice.

After getting home from the hospital last Monday I did a lot of resting for the first couple of days. Then prepping to leave for a weekend at an event in Wisconsin. This is a yearly trip we always make, and I was happy that we didn't end up having to skip it. Lots of friends and a lively Saturday, then spent the evening happily imbibing a lovely scotch. Stayed up far too late but was able to sleep a lot of the drive back home on Sunday.

No new news on the medical front. I have appointments set up with two oncologists to talk about the next steps. Both are three to four weeks from now, so we've got a bit of a wait in front of us. From what I understand we are looking at two options, either another round of chemo or we're done with treatment for now and we set up regular scans and blood tests. A friend recently asked me when we could start using the "R" word. I'm not really certain how long until we can consider me in remission. I know that if we are done for now and the first couple of scans show clear, there will come a point when I will be declared NED (no evidence of disease). But the bigger words like remission and cure are a longer way off.

This of course is assuming that I ever get to one or both of these terms. Stage 4 is an evil beast and I've yet to overcome the underlying fears of recurrence. I've found more rectal cancer patients diagnosed in stage 3 or 4, and they've all had a recurrence within five years of the end of their first treatment. And it seems that the recurrence is a dead end. It's truly frightening to think about it... but I know that this is only a portion of a percent of the rectal cancer patients out there, and every single story is a different one with a different journey. I am standing by my positive attitude and will continue to live the best I can in every day that comes. I refuse to give in or be laid psychologically low by tables or percentages.

I try to show the best of my positive sensibility here in this online journal, but I also want to show the truth of things. There are times when I am very scared. But I do not let it rule me. There may be moments of a tightened throat and eye prickling, but I use mindfulness techniques and conscious thinking to keep myself grounded and to allow those moments to be what they are without being dragged down by them. I can sit with fear very comfortably. It actually allows me to better make decisions and keep focused on the now and the tomorrows. As I've said here before, none of us have the promise of tomorrow. That lack of promise is why every morning starts with some joy for me. And I hope that it takes a very long time for me to lose the charm of that.

I guess what I am trying to say in a more blunt manner is... don't worry about me when the conversation here turns a bit darker. I don't want to hide that side of it as it does occupy my mind often. But it is just a small percentage of the time. Fleeting moments that keep me grounded and that much more pleased with the good things. I hope you will excuse me now as I go to work on a baby blanket for one of those good things that is coming.

Sunday, December 2, 2012

Getting better all the time...

Recovery is coming along swimmingly. Everything is going much faster and easier than the first lung surgery. The surgery itself was under two hours and my surgeon was very happy with how it went. I was awake and lucid, and surprisingly without pain, just a few hours afterwards. The epidural did a fantastic job of keeping everything numb and relatively pain-free this time. Still had nausea issues Friday evening, but not as bad as last time and none since the first night. They've already removed my chest tube and epidural and I've been up and walking around with no problems today. It is a strong possibility that they may discharge me tomorrow. I am really happy with how things have gone. It is kind of shocking to me that it is only Sunday and I could be home so soon.

Still unsure of what the next step is following this, or if this was the last step. Will know more after I've seen a couple of oncologists in the next week or so. For now I'm just going to ride out the good fortune that I've had with this last surgery.