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


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.


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.

Wednesday, November 28, 2012

Footsteps in the sand

I read an article this morning about how some of the cancer support groups called Gilda's Clubs are changing their names. Gilda's Club is named after the Saturday Night Live comedienne Gilda Radner who died of ovarian cancer in the late 80s. The clubs say that more and more of their new and younger members have no name recognition of Gilda. They are renaming themselves to much more descriptive (boring and overlong) titles such as Cancer Support Community Southwest Wisconsin. This made me think about the idea of legacy and how fragile it really can be.

It would be easy enough for these clubs to retain the Gilda name and simply educate new members about who she was, her personal fight with cancer, and all the advocacy work that was done in her name. A trifold brochure would take care of this. A single page on their website could do it, and even include links to videos of her SNL performances. Inform and entertain at the same time. But rather than going the extra step, they are just making the name change and removing the intimacy that comes with it. One of the points of cancer support groups like this is to bring patients/fighters/survivors together and let them know that they aren't alone. Coming to a group named after a cancer patient makes sense. It feels warmer from the get go. I'm personally less inclined to be emotionally interested in a clinically named group. At least be clever and create something with a good acronym. It just feels wrong to me to remove the personal connection in this way.

There are plenty of companies, groups and organizations out there named after people that hardly anyone knows anything about. If you want to know why they're named after so-and-so, then that information is typically readily available. And often in flowery language about how terrific and influential that person was. Why not show a cancer victim the same respect? Part of the beauty of a personally named cancer group is that it shows those current members that one person can be influential, can make a difference, can leave a legacy. It can give them one more reason to fight, one more reason to work harder, and network, and reach out, and live with more purpose.

One thing I've learned this year is that my will to survive and my positive attitude is not necessarily the norm in the cancer and illness community. Although there are many others like me, there are also many many others who give up or sink into depression. It is still hard for me to imagine handling this in any other way than as positively as I can muster. But everyone's personality and situation will shape their own response. A lot of the positive fighters that I see are parents. And their children give them a damn good reason to fight. And they know, even when they are gone, that a part of them will live on in their kids. What about those of us without them? We don't have that easy-out in the legacy department.

I'm not wishing that I did. I am very satisfied with my choice not to have children, I wouldn't change it even in light of current circumstances. But that leaves only this current generation of friends and family to remember me. Personally, I'm okay with that. I'm not really the legacy type, other than a legacy of memories of great times and experiences. In my opinion, most of our lives are just like footsteps in the sand... imprinted but then washed away with the next wave/generation. There are a few geniuses, artists, and sincerely influential people that have created things and that the history writers continue to commemorate. But the grand majority of people live simpler lives and merely fade with the passing of time. These are still good lives. Life is for the living after all... the living people and the living of it.

I'm not any closer to the answer to the meaning of life. I haven't even been looking for it, honestly. I feel lucky, every day, to even have the opportunity to be here living. It's a fluke of nature and circumstance that I, in this guise and with this personality, even exist. All I have is what I have, who I happen to be. I believe life is in the experiences and the connections with others. I've not yet experienced everything I can, all the things on my growing lists. I've not yet explored the depths of all my relationships. I'm too busy right now with these things to worry about what happens when I'm gone. There's nothing I can do about it then anyway. Might as well take this day and these moments and run with them.

Sunday, November 25, 2012

T minus five

Been having rather a good week around here. A low key, stress free holiday and making the best of this long weekend. Spent a rather wonderful day with many of my favorite ladies yesterday. Tea, a movie and an evening of terrific food and lots of wine and conversation. Everyone headed their separate ways and I went to meet another good friend to finish dancing the night away. Splendid. I've also been making progress every day on an embroidered blanket for my nephew-to-be. And so far am pretty happy with how it is turning out.

I'll be getting the house together again this week. In prep for being gone to the hospital again. Lung surgery number two is nearly here. I'm happy that we are at what could be one of the final steps in all of this, but am not particularly looking forward to the surgery itself. I pretty much know exactly how it is going to feel, and the first couple of days of recovery just aren't all that fun or comfortable. C'est la vie... ah well. Hopefully this will be the end for all the tumors.

Need to make a couple of appointments to talk to oncologists about whether we are following up with more chemo. If not, this may very well be the last step in treatment currently. A pretty exciting possibility. Of course even when we do get to the 'end' of treatment there will still be regular scans and tests to make sure that I stay clear of this crap. I had the very good fortune to speak with a 12 year survivor last week. She warned me that the time to come after the end of treatment can be pretty scary. I'll no longer have the very regular contact with doctors that I'm used to and there can be a lot of fear when that constant reassurance goes away. I have a sense of certainty that it will come back someday, I just don't know when. And I will have to learn to accept that fear and move past it in the months and years to come. The physical part of this 'journey' may be nearing its end, but I will continue to live with cancer for a very long time emotionally and psychologically. It has reshaped my life in many ways. And I know the shaping is still in process.

Monday, November 19, 2012

Same as it ever was

There has been lots of normal in the last week or so. Recovery from the first lung surgery is a relatively lightweight affair. Other than some constant tenderness and mild soreness, I'm feeling generally pretty good. Energy level is still not up to my old speed, but I guess I've gotten used to the slower me and notice it less.

Thinking about it closely, however, there are subtle changes in what denotes normal nowadays. No matter what I am doing in a day, I have this near constant awareness of the import of everything. Even the simple daily things (like morning coffee or cooking a meal) are enjoyed at a heightened level. I realize this is an effect of the many internal conversations I've had about mortality over the months of this year. But I am a little surprised that the intensity of my awareness has yet to dim. Perhaps I am lucky and this is a permanent mental change. It certainly makes every day, even those filled with basic things, that much more special.

There are moments in every single day where I think "I am so happy to be able to enjoy [this]," but also a moment every day filled with "what if this day/week is it, what could I have done instead." I've got places to go and people to do things with, and I don't want to miss any opportunity anymore. My doctors haven't had direct prognosis conversations with me. I'm not sure if any of them have dealt with a stage 4 patient that has youth and health on their side. These two factors are what everyone is banking on to get me through all the treatment and surgeries. And though we are working towards "cure", everyone knows it is only one possibility. More likely is remission for a while (hopefully a long while). The years to follow all this will be full of regular scans and tests to keep an eye out for recurrence. This is what bothers me more than anything else. That I will get a reprieve and the next bout will be truly harsh.

But I bat those negative feelings away and focus on my present. I give myself over to the details of every experience: the smell and heat of a fresh cup of tea, the warmth and gentle strength of a friend's hug, the softness of my cat's fur and the resonance of her purring, I close my eyes to better catch the details of a song. I experience and cherish things with a depth that was rarely present before. And I recognize this ability as a blessing. Through everything that has happened this year, and all to come, I have lived well, possibly better than before. This 'new normal' is far more emotionally dynamic than the old normal. I was never as engaged or present as I am now. It makes for a headier, fuller existence. My days feel longer somehow. There is a lighted edge to each new memory made. Normal has now crossed the threshold towards extraordinary. For this I am thankful.

Thursday, November 15, 2012

It's a Date

Lung surgery two is officially on the calendar now. I'll be headed back to Ypsilanti and St. Joe's Friday, November 30. Another early morning Friday surgery, but hopefully this time with less than a week in the hospital. Since we know that poop is the critical factor for discharge, I'll be making sure they've started the 'moving agents' on day two this time around. Ideally this will speed up the process and save me that additional full day of just waiting for things to happen. Of course that is assuming that everything else goes to plan and there are no additional issues or complications. Fortunately this time I am going in with confidence. None of the worries I had last time. I'm expecting things to go smoothly and to get this critical step in treatment behind me.

Not sure what is on the roster following however. I'll be pushing to meet with a medical oncologist while I am there for a second opinion on follow-up chemotherapy and other options. But I'll need a couple of weeks of recovery before any next step is started.

In general feeling pretty good, physically and mentally. Still some tenderness at the incision and tube sites. But I'm being very careful with my weight limit and keeping active but not overly so. I'm definitely ready to keep moving with treatment and am mostly optimistic about the end results of everything. The end of the year holiday season is nearly here however, and that is starting to make things feel much busier. I've also got lots of little projects to finish before my nephew arrives in a short 7-8 weeks. It will be a bit of a whirlwind through the end of this year. And I'm already starting my wish list for 2013.

Sunday, November 11, 2012

Indian Summer

There have been some lovely, mildly warm, sun-filled days in the last week. Possibly even hitting a record high in the low seventies today. After a late breakfast this morning, we went and took a brief walk along one of the park trails. I'm supposed to be up to a mile every day by the end of week. (Exercise = deep breathing = lung recovery) Easy work for me as I'm used to 4-6 mile walks on a daily basis before all of the chaos of this year. But even just the 3/4 mile today was making my side pretty twinge-y by the end. Baby steps, and the constant challenge of not allowing myself to go overboard.

I thrive in the sunshine. There seems to me such promise and expectant energy in these days. Especially as I know that they are the last such days we will see for many months. So it is hard to hold myself back from jumping out there for an especially long walk or some other outside activity that is likely entirely too taxing on my body at this moment. Even though my mind says GO and I mostly feel okay, I know that slow but steady is the proper way to handle the day. Those of you that know me very well know that this is a tremendous act of restraint. Instead I sit at the table where the biggest strip of sunshine plays across the house, and bask like a cat in the rays with the last warm wind blowing through.

No news on the medical front. I should have a second lung surgery date tomorrow. But until that time, the next week or two should be pretty good ones as long as I don't overdo anything. There are plenty of little projects around the house to keep me busy and out of trouble. As a matter of fact there is an embroidery project that I really need to get working on very soon.

I have been home for just a couple of days and have spent a good majority of that time visiting with local peeps. I was only out of town for one week, but it seems like there was a lot of catching up to do. Feels like we got a lot accomplished around the house this weekend as well. And to end my weekend I got this excellent fortune cookie fortune: "A pleasant surprise is in store for you soon." Can't wait for it.

Thursday, November 8, 2012

Tap your heels together...

My ride should be back to pick me up in the next three hours or so to head back home. I've been chilling for the last day at one of my other 'homes,' this one in Ypsi and just a few miles from the hospital. This time under more friendly supervision from my doctor buddy and his lovely wife. They even let me sleep for an uninterrupted nine hours! No middle of the night poking or prodding, or five a.m. blood pressure checking. The last thing they really let you do in the hospital is rest properly.

I'd say that this was a rough stint in the hospital. But they've all been rough in their own ways. So I guess I should just say that it was another typical stint in the hospital. Issues with getting pain under control, especially balanced with nausea or utter loopiness from the narcotics. And of course the narcotic pain meds also cause constipation, which always slows up the discharge process (*snert* on the unintended double entendre). No rest, or at least not enough rest; and yet it feels like all I do is try to nap. And boredom, especially when I'm in there that final day when I don't really need to be in there anymore. It's not really so much boredom as it is frustration. I'm not likely going to be doing anything more exciting at home, but at least I would have the freedom of being home.

I expect a phone call tomorrow or Monday from my thoracic surgeon's office setting up a date for the next surgery. A short two to three weeks away. This will be a take two version of what was just done, but on the left side. (Here's to symmetrical scars!) It's highly likely I could end up in the hospital for Thanksgiving. Fun. Guess we'll just have to hold off on planning any holiday endeavors until I know.

Doing pretty well with the recovery so far. Still some soreness at the incision sites, and especially in the chest tube area. I don't notice it all the time, probably only about 70%. But it is very bearable and just a couple of ibuprofen takes care of it if it starts to bother me. I've got a set of instructions on exercises and stretches to do in the next couple of weeks. And I'll need to find a warm place to start walking every day. Prep for the next one to make sure that I'm recovered as best I can in the short time available.

Extraordinarily glad to be heading back home tonight. Hospital beds are not the comfiest things to sleep in for days on end. I miss my kitties and my own space. It will be awfully nice to wake up at my leisure in the morning and have some tasty Water Street coffee to start the day. And I'm really thinking it may be a matinee afternoon to see me some Bond, some tasty James Bond.

Tuesday, November 6, 2012

Not Pooh Christopher Robin, Poo-p

Well howdy folks. I'm still up and getting back to peppy. The surgery went well (I was told) and the pathology came back just like we wanted it to. Big clear margins on the tumor and no cancer cells showing in the other lymph nodes in the area. My surgeon says she "dug around like a mad woman" in there for all the nodes she could find, "just like [she'd] like to be worked on." So I'm pretty confident with how things went and what was not found. She's going to have me scheduled in 2-3 weeks for the next surgery on the left side. This will be a repeat performance on the other side to cut out that tumor, and the hilar node over there as well. So I've got a short reprieve to get better quick and ready for round two.

Still in the hospital. They removed my chest tube and the epidural catheter yesterday. And far as I know, my x-ray from this morning is good; they haven't told me it's bad and typically I'd hear about that. So no additional air or leakage in the chest. I'm feeling much, much better and most of my pain is gone or minimal and bearable. I've not taken any narcotic pain meds for coming up on 24 hours, and that makes for a much more pleasant and relaxed me. Just some low level pain meds for the soreness that will stick around for a few days.

The only thing that is still keeping me in the hospital at this point is poop. It seems that all my hospital visits come down to that. They want to make sure that all systems are working before they let you go on your merry way. They've been feeding me 'moving agents' over the last day. So hopefully one or more of them will kick things into gear down there. I can definitely feel that my belly is tighter over stuff that isn't doing much. I always start getting really impatient at this point however. Other than my guts, I'm feeling pretty good considering and everything else is clearing all the parameters. We're just waiting for poo, which is not nearly as interesting or entertaining of an existential comedy as Beckett wrote. Nor Milne for that matter. I was originally expecting to be out today, but that may move to tomorrow if things don't get moving quick.

So it appears that I've mostly made it through this next surgery relatively unscathed and just about ready to go around again. It's been wonderful watching all the support flow through. Team Victoria is a pretty sweet team to hang out with. You guys almost make this all fun. I will repeat myself (ad nauseum) that you all make it easier. Some days I feel like pulling a Sally Field with the whole "you like me, you really really like me" speech. But I'd have a whole row of gold-hearted folks to work my way through, clutching at each of you with so much love.

Wednesday, October 31, 2012

Kittens and Butterflies

It has already been a busy week around here. Plans were thrown awry Monday evening when we heard a kitten crying in the garage. Turns out that someone came by and dropped a 2-3 month old kitten wrapped in a shirt through the pane-less window of our garage door. There are some heartless people out there. We are just glad that we heard her crying and were able to bring her in and out of the cold night. So the evening turned into kitten care and trying to keep the other two cats from freaking out. She had really red-rimmed eyes with discharge that we cleaned up, then fed and watered her and showed her the litter box. Once she was warm and cleaned up she settled right in. I'm not sure why someone just dumped one kitten, and one this old and clearly weaned and somewhat socialized. She had no fear or issues with the other cats and took to exploring quickly. She's an adorable orange tabby with a gregarious personality. Took her to the vet, who said that she has a cold which we got medication for. Already lined up a possible family for her as well. Though she is sweet and we would not be disappointed if she ended up becoming part of the household.

Then I was out of town all day yesterday. Got my pre-op CT scan and preparation instructions. Had to sign one of those forms that declared I understood all the risks and possible complications... that's some scary shit to read. Oddly enough, I never had any worried thoughts before my first surgery in May. But this time around I am; not sure exactly why that is. The first time I was mainly thinking about how I would be different after the surgery and they removed large pieces from within my body. This surgery is taking out far less and will leave me with little more than three new tiny scars. Maybe it is because we're dealing with far more important organs this time around, and that the hilar lymph nodes are nestled so near the heart and major arteries. Maybe I just better understand what I'm getting into with surgery this time. I had no personal frame of reference in May; just knew it was going to be an ordeal. Don't know the reason, but I'm nervously watching the days fly by.

Today I'm taking care of any and all laundry that could possibly need doing. Catching up and prepping email and online stuff for me to be AWOL for at least two days (probably won't post again until the weekend). Soon I'll be dusting and vacuuming. Likely go through and clear any perishable stuff out of the fridge and pantry tomorrow, and packing. We'll be out of the house for almost a week and I don't want to have anything to deal with when I get back home. I'll be pulling out the Ample Pantry gift certificates and taking friends up on food offers for the first few days back. The first week or so of recovery from the first surgery was pretty rough. I suspect this one will be easier and faster, but I would rather prep for the possibility that I may not be moving much for a few days.

Busy in mind and body. I am still excited that we are at the next step in this process though. I'm keeping my fingers crossed that pathology comes back negative and we fast track the surgery for the other lung a couple of weeks after this one. And just like that my November is gone before it even starts. But, that puts me one month closer to being well again.

Sunday, October 28, 2012

Celebrate good times, c'mon!

This was a pretty fantastic weekend for a last hurrah before my next surgery and the low of recovery. Got to see the university's production of Spring Awakening with a hot blonde date Friday night. They did a decent job with it, and I'm a big fan of that show and how it starkly deals with some harsh issues. It's a passionate piece. Then a terrific party full of wonderful people (and a great band) for most of Saturday. Plenty of great food, a chill atmosphere, *lots* of good porter, music by the fire, *more* porter, conversation, cuddling, and drunken Scrabble. Woke up to friends and love and laughter this morning. Hit Zingerman's on the way home for tasty bread and treats. My hair still smells of bonfire smoke and I'm good and tired from a beer-soaked late night. Life is damned good.

I'll be getting my house in order this week, cleaning and organizing and laundry. Don't want to have anything to fuss over when I get back home from the hospital. Plus another trip to Ypsi for a CT scan, and a bit of visiting as well. (That drive across I-94 is becoming awfully familiar.) A busy week which I am certain will fly by. Before I know it I'll again be in oh-so-fashionable hospital gowns. My brain is already circling with all the thoughts that come when a surgery looms. I keep focusing on the fact that I'll be surrounded by people whom I love before and after. And I have complete trust in my surgeon. It's all good, it's all good, it's all good...

I was hoping to have more to say, but I'm pretty darn tired and my book is beckoning for a nightcap in bed. Expect to see another post following my Tuesday scan.

Thursday, October 25, 2012

Holy Expensive Batman

I had no idea that chemotherapy was so freaking expensive. Finally got a billing for my first couple of treatments. It is absolutely crazy how much some of this stuff costs. Just one drug, oxaliplatin, costs over $10,000 per treatment. Per treatment! That's $61K racked up. There's another drug that is nearly $8K a pop, one at $1,400, and lots of two to three hundred dollar charges per visit for the port flush, the anxiety meds, other meds and liquids I didn't even realize were getting pumped into me, the visit itself, etc., etc. Thank goodness for health insurance. We're paying a lot more now than when I was on my own work's plan, but it is still saving us a LOT of money in the long run, even the short run.

Since I changed health insurance halfway through the year, I've had to meet a second deductible (ugh). But on the plus side, this latest bill already puts me at the maximum out-of-pocket expense for the year. So from here on out, other than co-pays, everything should be covered. Perhaps this year will be the one where I get to deduct medical expenses on my taxes. I've certainly paid enough out already. I figure there is at least one fancy European adventure I could have taken for the price of medical care so far. But don't think I'm just here to complain... we've been able to afford everything that has come in and the big round numbers of some of these bills are nowhere near the small percentages I've had to pay. There's still that moment of sticker shock when you look at the full totals though.

I recognize, and appreciate, how lucky I am to have had health insurance and to have been able to get continuous coverage with the changeover. There haven't been any mis-billings and I've not had to call and deal with the insurance company over coverage (knock on wood). Again, I feel like I've gotten out pretty lucky and easy with a potentially difficult situation. It also makes me feel that much more proud that I was responsible enough to have put myself in a solid, stable financial situation before this all started. The last couple of years have been years of saving and putting more into retirement funds. I was never in a better spot to have something like this happen.

My biggest financial hope right now is that I can get back to saving a little bit every month in order to afford the traveling I hope to do once I have beat this. I know I can get there, just have to be smart and stay positive.

Monday, October 22, 2012

The Fast Track

Well, looks like we are officially moving on to the next step of the treatment process. My thoracic surgeon agrees that it is time to go in and start cutting out those nasty lung tumors. The best case scenario that I mentioned last post is coming true. Surgery is already scheduled for the Friday after next (Nov 2).

My appointment today was moved back a couple of hours so that my surgeon could discuss my case with the "tumor board" (a collection of doctors, oncologists, surgeons, etc.) at the hospital. She came right out of that meeting to our appointment with an aggressive surgery plan that the board agreed with. The first surgery will focus on the right side, taking out the lung tumor and the hilar lymph node. She will also take samples of other lymph nodes in the lung region for testing. If the surgery margins are clear and there is no positivity for cancer in the other lymph nodes then a quick two weeks later we do a second surgery for the left side tumor and hilar node. If, however, there aren't clear margins or the other lymph nodes show positivity, then we're back to chemotherapy and possibly the more precise 'cyberknife' radiation. I am rooting for option A.

Not much discussion of the treatment steps after surgery, since the pathology from surgery one (and hopefully two) will be massive factors in making those decisions. I'm guessing that more chemotherapy is still on the table, but who knows. I'm definitely on the fast track towards surgery. They gave me three medical orders to fulfill before I left today. So I got an EKG, a set of chest x-rays, blood drawn for labs and a urine sample. I go back for another CT next Tuesday and will chat with my surgeon about that and final details for surgery as well. Feels like we are rushing along now.

I am pretty excited with the results of the day. It trumps the sense of overwhelming that is threatening. There is a little bit of trepidation in my mind though, just because this is a major surgery and is riskier than my first one. So many possible complications when you're dealing with the lungs and working so close to the heart. I am feeling almost 100% physically right now, so it's a good bet that my blood counts are up. And I plan to be extra careful to take care of myself in the next week and a half. I think I'm in really good shape to handle these surgeries and recover quickly.

My hope is pretty high and I know that I am in excellent hands. This thoracic surgeon is my favorite of all the doctors on my team. I know she really cares and that she is extraordinarily talented. She is always very clear and super informative, so I'll be more than prepared for the surgery. I just hope that the good news continues and each step is one step closer to being rid of this stupid cancer.

Friday, October 19, 2012

Bad blogger

Has it really been almost a week since my last post? Damn, I'm derelict in my duties. I was on a plan to post every second or third day, and was pretty proud of making the time and commitment to keep up with it. But I guess the lapses were bound to happen at some point. There has also been less impetus to post as often since I haven't had a lot of news or medical issues cropping up lately. This is good, but bad for blogging.

I do actually have some news today. Saw my oncologist yesterday to discuss my PET scans again. He confirmed that the tumors in my lungs have shrunk, not only since my July scan, but even from my initial one back in January (woot!). So the chemo has been doing its job. To be honest, there was a small part of me which worried that my most recent scan would show no improvements. That I had gone through the last three months of pain and discomfort for nothing. That is not the case, and he reiterated that I should go talk to my thoracic surgeon about resection. That appointment happens Monday. In my best case scenario she will agree that it is time for surgery and quickly find a space for me in her queue. We will see. And of course I will update you all on what she says should be the next step here.

This off of chemo thing is fantastic by the way. My energy level is definitely increasing and I'm having less random cramps and pains. The neuropathy has finally faded out and only bothers me now if I'm not wearing gloves outside in the cooler temps. I am finding that my cold tolerance is lessened though. But that could also be from the extra weight loss. Not a lot of fat stores left for keeping myself warm.

On to more positive subjects... the baby shower was a complete success. The decorations looked classy, yet cute. The food was all great and was mostly snarfed up. Our homemade caramel corn for favors was terrific and addictive. My sister was very pleased with everything and got a lot of great useful gifts. Only 10 weeks to go before his arrival, pretty exciting. I've got to get on task with finishing the sewing on all those baby bibs. That will be a lot easier since I cleared up my sewing area this week. Even got a new dress finished for an event this weekend, including embroidery. Am feeling pretty pleased with my productivity this week.

October has been proven to be a busy month. It's been that way for several years now, but in the past it's been mostly because of going through fund drive at work. Though there was always lots of social juggling in this month as well, and typically prepping for the Halloween party. No work or party this year, but it has still felt pretty busy and booked. Now that my mobility is back to full speed and I'm feeling so much better, I've really been wanting to go, go, go. I've been out of town every week for a day or more and that trend continues until the end of the month. It's been good to get out of the house and the spaces I've been stuck in for so long. My mind is already thinking of bigger more distant trips (where's that passport?), though I know I can't start planning those yet. However, it is fantastic to be in such a positive and forward-thinking state of mind right now.

Saturday, October 13, 2012

It's raining babies

Been consumed with baby shower stuff for the last few days. Finished up all my parts of the crafty decorations and things at home Wednesday and Thursday. Then scooted up to my sister's house. We've been running all the errands and getting favors and decorations ready to go. Last night her best friend came over and we had a great girls night making tons of caramel corn and finishing the favors. Of course we had to make an extra double batch at the end so each of us could have a big bag to keep for ourselves. It's pretty damn tasty stuff.

The shower is going to look great. The theme is fall with pumpkins and leaves in oranges and browns with blue "it's a boy" things. Should be classy and cute at the same time. My sister seems pretty happy with everything, and that is what really matters. Trying to make it a great day for her. All this prepping for the nephlet stuff has been fun and I'm looking forward to when he comes around at the beginning of the year. Got to feel the baby kick, which was weird but cool. Think that probably sums up the baby making experience from my perspective. Pregnancy is certainly a strange experience but also fascinatingly interesting. Our bodies do some amazing things. And I'm pretty excited for my sis and her husband. They're going to have a blast being parents and I know he'll be growing up in a terrific environment.

Nothing new on the cancer side of things. Another week off of chemo and I'm feeling about 90%. If it wasn't for the fits of tiredness here and there and the twinges in my fingers I'd almost say things are normal. Still feeling really optimistic about possibly moving on to the next step in treatment. I've already scheduled the surgery consult with my cardio-thoracic doctor in another week. Hopefully she'll agree that it's time to resect the evil things and get moving forward.

The next couple of weekends are full of events and gatherings with lots of great people. I've got a sewing project to work on for the next week. Crafty things and sewing to do before the nephew arrives in just another nine weeks. Some neglected books I'd like to finish. My days are starting to be busy enough again. I just really need to take the time for yoga every morning. Been remiss in sticking with it. Also haven't been to the gym in many months, and I want to start getting my strength and flexibility back. Easing my way back into the swing of regular things again. And so the shifting stages of treatment and recovery continue. This feels like a really good place right now.

Tuesday, October 9, 2012


Ended up being a no chemo day, but for good news reasons this time. My oncologist says that it looks like my latest PET scan shows shrinkage in the lung tumors, and nothing new has shown up. However, all three of my PET scans have been read by three different radiologists. And one was done in a different facility with a different machine. He wants one radiologist to look at all three scans and report on them as a whole. We will meet again after that has happened (in another week, next Thursday) to talk about the scans and his recommendation. If things have shrunk, then it's probably time for me to go ahead and set up the surgery to resect them. So... we could be on to the next step in this journey.

He decided to hold the chemo for the time being because I will need to be at my best if surgery is coming soon. Not a good idea to go in with low WBC counts, too much risk for post-op infection. I was not at all disappointed to be turned away from chemo this time. It seems like good news, and I'm more than happy to be in prep for surgery if that is the case. I can almost imagine that I can see the light at the end of this tunnel again. It feels really good to possibly be moving forward in this process. The surgery is daunting and that will be a few weeks of suck to recover from. But if it cuts out the last of the tumors, then we may be close to the end of all this.

Needless to say, I'm feeling pretty positive today. It is good to hear that the chemo has been doing its job. I was mildly concerned that I've gone through three months of crap for no good reason. But it looks like that isn't the case. I am back to the waiting game again... yet it doesn't bother me so much right now. I expect confirmation next week and I will quickly set up an appointment with my thoracic surgeon to get her opinion soon after. Hopefully she will agree and we'll get me rushed into her surgery queue. That's my optimism showing. But I'm sticking with the positive attitude tonight. Even celebrating with a couple glasses of wine. Two weeks out of chemo and off the antibiotics, I can have a drink without issue. Some normalcy. It's a good day.

Sunday, October 7, 2012

Catching up

Well, that was a bit of a stretch from post to post. Been out and about getting in some good visiting most of this week. Headed over to the east side of the state to see several of my favorite people for a couple of days. I like being able to jump in the car and be on the road for a while. Other than needing a break every hour and a half or so, my butt does pretty good anymore. And I find something even more poignant than before about the open road stretching out before me. It feels good to drift along to music while the landscape passes by. There's the sense of freedom and movement of course, but also this sense of a pocket of escape, of no-thingness while alone in the car. It can sometimes feel like a buffered sacred space. And all under my simple physical control. There is focus (there must be of course), but there is a languishing as well. Ease and control in perfect balance.

I'm really feeling the traveling bug. Must be some cabin fever from the last few weeks. I want to see new things, to experience them with good people, to talk, to touch, to feel enlivened. I would really love to jump a plane and travel somewhere far away, to walk through an age-old city, to feel other and curious about all the unknown around, to cling to my companion while we muddle through and laugh at ourselves. An every other chemo week schedule makes that a little difficult to plan right now. And I never know when my stupid body will decide to have a fit and try to ruin my good time. Like yesterday. I was trying to have a lovely visit with friends and my tummy decided it was not happy and to cramp for most of the day. Bearable until later in the afternoon when it just wouldn't give up and invited my back join the ache party. Oh well. I bullied through it until home, where I popped a pain pill, turned the heated mattress pad on high and snuggled deep in bed until it all passed. Felt so very good to be warm and cozy with an entertaining trashy book in hand. A brief hibernation and I got up this morning feeling worlds better.

Soon as my schedule frees up from the every other week treatments, I am certainly going to be planning some excursions. Maybe somewhere southward this winter where it's warm and there is family. Maybe out to some city on the east or west coast. It would be pretty cool to see New York City decked out for the Christmas season. Who knows, and I don't really care as long as it is new and an adventure.

Today has mostly been a lazy Sunday. There's bean and barley soup with lamb reheating on the stove; so dinner is a no-work affair. Had lovely afternoon tea with two of my best gals. Think I'll catch up on some good TV show while I work on baby shower stuff for the evening. Not a bad end cap for a really good week.

PET scan results and more chemo on Tuesday. Keep an eye out for an update that afternoon.

Tuesday, October 2, 2012


I've been immersing myself again in cancer stuff over the last few days. Checking out websites for organizations, finding blogs by other colo-rectal folks, as well as finding books and movies that deal with it fictionally. It's not like I don't think about it everyday, but most of the time I put it on the back burner of my mind and focus on anything else. It might sound strange, but it has been a good thing for my mind recently. Kind of a forewarned is forearmed sense. I may not have a lot of control over what my body is doing but I can mentally take some control. I've learned a couple of things and gotten a better hold on some of the lingo. It's a strange comfort. I am sitting heavily, yet comfortably, with the reality of this disease.

The hardest and weirdest part has been some of the blogs I've come across. I am the kind of gal that likes to start things from the very beginning. I like to experience stuff fully and not miss any steps/parts along the way. So I find a blog and immediately head to the first entries and move forward in time from there. Which is great until I get to a post from a family member or friend that says that they've passed away. Changes the whole perspective on what I've been reading. It sets you back into reality pretty hard, and again reminds me that I am dealing with (as I've said recently) some serious shit. There is a little sadness, but in a strange way it bolsters me in this fight. I have learned a lot about the different turns this process can take: remission, recurrence, treatment difficulties and options, etc. Also helps me to be forewarned about side effects and issues related to my current chemo, possible future chemo and other treatments. After all, a gladiator doesn't focus on the carnage around them at the end of a fight... they take away knowledge, strength, will, courage.

I've also been reminded that I feel pretty lucky in my personal journey through treatment. I have dealt with the standard side effects but nothing has taken me down too far physically. Surgery recovery was the hardest part, and even then only for the first three or four weeks. I've not had allergic reactions to any medications or chemo. I didn't have any outstanding health issues going into this. No new health issues have cropped up in the meantime. Other than my little infection debacle a couple of weeks ago, I feel like I'm getting off pretty easy.

One of the most comforting parts of my web crawling has been realizing that there are others going through the exact same thought processes and emotions that I am. It's nice not to be unique for once. And you should all understand just how keen I am to be unique. Ain't no one out there like me dammit! But in this situation it is nice to be just another member of the crowd. I am not the youngest to go through this; I am not the healthiest to get this; I am not the only one; I am part of a larger group (an army) of gladiators. And we all have to wade through the same muddy shitpile to get to the end, the other side, the accolades, the warm showers. And everyone (real and fictional) has their loving friends and family to help carry them along. Reading or watching that part is heartwarming. Because that is one very good reason why we fight. For the smiles, hugs, words and love that is out there. It is hard on this side of the coin, but I recognize that it can be equally difficult for you on the other side as well. I hope I don't forget that and get too caught up in the Victoria Show. I work hard to keep it all balanced.

So I am a little fixated at the moment. I'm sure it will pass in the coming days and I'll turn my focus to something else. Probably nephlet things as the baby shower quickly approaches. I'm planning a short trip out of town for the next couple of days to see a variety of friends; always a good thing. My pep is back and I'm going to run it ragged.

Sunday, September 30, 2012

Heart Balm

As you can likely tell from my last couple of posts, it's been a pretty down couple of weeks. My hospital vacation truly bummed me out and then chemo week physically brought me low again. I'm starting to recognize that the cumulative effects of the chemo are happening. It takes me a little longer to bounce back now, the fatigue lasts a day or so longer, and appetite and belly issues are more common. Depending on what my PET scan this week shows, it could be another 3 months of chemo still to come. So I'm just going to suck it up and deal.

Went to an SCA event yesterday and saw many friends. It was a well needed trip out of town and a balm to my heart and soul to spend good time with so many good people. The sun was shining, it was a warm and beautiful day to be out. In case I haven't made it clear yet, all of you that are cheering me on and loving me through this are instrumental in this fight. I can do pretty well keeping my attitude positive, that's always been my way. But the enthusiasm I get from planning activities with my friends and family, the simple joy of talking/texting with you, the smiles you bring with your pokes and avalanches and attention, these are the little daily things that help keep me looking forward. Life is experience and people. And as I know I have said before, my people are awesome.

Awoke this morning to a good friend asking us to breakfast. What a great way to start the day: food and conversation and hugs. Then home for a lazy afternoon and rest. My youngest kitty has been hanging close and purring at me all afternoon as well. It's been another lovely day. Dinner is on the stove, simple comforting pasta e fagoli with baked apples and vanilla gelato later. Think I'll catch up on a good tv series and plan some trips to visit friends this week. It's off-chemo week, and now that my attitude has swung back up I'm already feeling restless to get out of the house and see more folks. Heck, if I'm feeling this good tomorrow morning there may be a lot of chores that get accomplished. It's nice to feel good again.

Thursday, September 27, 2012


I am so freakin' tired. The chemo is just wiping me out right now. It is probably because of my little setback last week. I was already in recovery mode before we even started this treatment. I run one errand and I'm ready for a nap. Run another, and another nap. Had three doctor appointments today and it was just at the edge of what I was able to handle. Also finally got the invitations for my sister's baby shower in the mail. Those are a week behind but still out with enough time for RSVPs, so I'm not sweating them being late.

My energy and enthusiasm have been rather lacking for the last week's time. I know that hospital visits like I had are probably pretty normal in the scheme of things, but it bummed me out. It was a kick in the pants to remind me that we are dealing with some serious shit here. For all the good/normal days and the good times that I'm determined to keep finding, the underlying dark fact remains for now. And I still find it hard sometimes to just sit in peace with the harsh reality of my illness. Stage four is a scary thing and my body is doing a lot more work with recovery and fighting than I give it credit for. It's easier to recognize on days like this when I am so wiped out.

Tomorrow will be nine months since my diagnosis. That's a long time to be dealing with anything. I have complete sympathy for my sister and how hard nine months of pregnancy must be. Especially with your body changing so quickly and so much. I know that I hit the wall last night and was as mentally and emotionally tired as I was physically. It was a moment of "I'm done." It has been so much for so long now and it isn't always easy. I'm still hopeful and still full on in this fight, but I'm in a bit of a valley right now. I am looking forward to an event this weekend and seeing many friends. I am expecting to have a fantastic time and will be drawing lots of energy from the people and activities around me. I hope it is just the thing to help me start making my way out of these doldrums.

Tuesday, September 25, 2012

We're Live Live Live

Despite my infection debacle, my blood counts are looking really good this morning. My neutrophil counts are almost at the normal range even. So, since I'm still taking the antibiotics and everything continues to drain well and I don't have any pain... it's a go for chemo.

12:15 p.m.
Soon as I saw my oncologist and he approved the chemo orders, they were quick as bunnies to get me into the infusion room, accessed and started in on the anti-nausea drugs. I had my morning chauffeur take a detour to Water Street for breakfast and lunch items, and a lovely steamed milk. Just now getting to my black bean breakfast burrito, spicy and tasty. My energy level is really high today, so I hope the atavin doesn't mellow me out too much this round. I'm sure that by the end of the day all my pep will have pooped, but it's nice having it with me for now.

12:25 p.m.
First anti-nausea med is done. Second being loaded in now. I remember laughing at my first treatment about how it seemed like overkill to pump me full of four different anti-nausea meds. It seemed unbelievable that it could really be that bad. But then I went home that first time and threw up anyway. I really need to stop chalking all the "Danger, danger Will Robinson" talk up to drama and remember that we're dealing with some serious shit here. It is easier to laugh it off, or spin to the positive than to sit down in the infusion room, look around and see the crap that so many different people are dealing with on their personal cancer journey. Some look pretty well, like me. Others are pretty wiped out and have clearly been struggling. It's humbling and real and hard.

1:20 p.m.
Enjoying some lovely lemon poppyseed cake from Water Street along with some hot cocoa. My pump was beeping, declaring done with the last anti-nausea, so it's time to start the actual chemo drugs now. The long two hour stretch begins. Going to catch up on FB and have a bathroom break.

1:49 p.m.
Nurse just came by with the paperwork for my latest PET scan scheduled for next week. This will tell us how the chemo is affecting the lung tumors. If it's eliminating them, then we just continue on the chemo regimen until things are stable enough for resection of the lymph nodes and/or any remaining tumors. Still a long haul of this ahead of us. But at least we'll have some answers about how the process is going in another couple of weeks.

3:25 p.m.
That was an unexpected and good nap. And now we're basically done. One last shot of chemo and pump hook-up. Gotta let my ride know and close out this edition of live chemo blogging. Stay classy friends.

Sunday, September 23, 2012

Jiggity Jig

Home again, home again, jiggity jig! They finally released me midday today. Packed all my stuff up quick as could be, changed in to some real clothes and got the heck outta there. Headed straight home where I was greeted by what I will delude myself into believing were grateful kitties. Was craving some pasta. So after a quick unpacking, headed back out into civilization and rustled up some really good lasagna. It was pretty freakin' terrific to be out and about and not stuck in the hospital anymore. Don't get me wrong, all my nurses and their assistants were great to me, the rooms are decent and I had people and stuff to keep me occupied. But it's just not the best vacation you can plan.

It's been a good afternoon and evening so far. Though I am getting tired pretty quickly. There's not a lot of opportunity for uninterrupted bouts of sleep in the hospital. And I'm so looking forward to crawling in to my own bed, with fresh flannel sheets, and sleeping without an alarm or someone to wake me up in the middle of the night to take my blood pressure or my blood. Speaking of blood... my WBC counts have incrementally gone up each day I was in the joint. Still not very high at all, but staying on the upswing is positive. They are continuing the antibiotic regimen with two oral pills for the next 10 days. My energy level is back up to the new normal and I am generally feeling fine. Have been for the last 36 hours actually.

This Tuesday is a planned chemo day, but I'm not sure how that is going to work out considering my last week's experience. I'll see what my oncologist has to say, and will also be checking in about when we are planning my next PET scan (should be soon I suspect) to see how the cancer is reacting to the chemo these last couple of months. I'll also see my rectal surgeon again on Thursday to double check on how my ass is healing after this most recent debacle. Expect to see a new post on Tuesday, whether it is more live chemo blogging or an explanation of why we're not getting it this time around.

I'm just very grateful to be back in my own space again. It was hard to get excited about much this week. I really struggled with feeling confined and down. I didn't get up and take walks or anything. I just wallowed in my room and took comfort in the people around me. It was very, very nice to have my sister in town for part of it. We had some great conversations, and she is such a relieving and loving presence for me. Again, I am amazed at my support network, at all of you who are helping in so many ways and reading and cheering me on through this. I had special deliveries of tea, chocolates, bagels, lunch, dinner, coffee, movies. I feel very lucky and extraordinarily thankful. So, thank you. And know that I hold so much love in my heart for you all.

Saturday, September 22, 2012

Safety First

Still here in the hosptial, waiting it out. Infection is clearing up rather nicely. All the inflamed ugly redness has resolved into a healthier pink and not inflamed. No more blood or stinkiness, and still draining nicely. My surgeon is happy with how everything looks and is going. The med docs seem happy with how everything is going. I've been getting IV antibiotics fresh every six hours for two days running now and it seems to be agreeing with me. They're transitioning me from one IV antibiotic to one oral and one IV (which can be prescribed as an oral). They're keeping me overnight for observation and to make sure I don't have any issues with the new meds. If everything looks good, I continue to have no fever and my WBC counts don't fall any lower with tomorrow morning's blood work, they will likely let me go sometime tomorrow afternoon. So almost done.

In this blog post we learn about blood science (yaaaaayyyyy!!!). Today's post is brought to you by the letter N. When you get a basic CBC blood work up you get your RBC, WBC, hemoglobin and a whole slew of other chemistry names that tell you nothing about what it really is. One of those words is Neutrophil. This is your mature white blood cells. Your WBC count tells you how many recruits you have on the ground, but the neutrophil count tells you how many seasoned vets in tanks are there with them. These are the guys that strategize and really know how to take out the enemy (evil cancer - ooooohhhhh). So your WBC count could be pretty decent, but if your neutrophil count is low then you are still in pretty crap shape. If they're both low (like me), then you are in crap shape no doubt about it. This state is called Neutropenia and calls for neutropenic precautions. So there's a note above my name that says this and is accompanied by a box of face masks. Anyone who comes in who may be sick, could have been exposed to something, or is generally paranoid about that sort of thing can don a mask before coming in. This is for my safety, not yours. I don't have anything to give you, but I am a ripe candidate for all bacteria. I've got five whole pages of other precautions, but you seriously don't want to know about that paranoid paraphernalia.

It's certainly interesting seeing most of the people in my room with pale yellow masks on. And the way they move when people talk is weird and birdlike. I get kind of fascinated watching their masks and getting caught between Bane and Big Bird imagery in my head. It's not an absolute that you have to don a mask when you come in, but all of the day staff are following the guideline. And since we take things like this seriously in our household, it's safety first even for the safest of visitors. (*snerk*)

Good visiting tonight when my sister showed up in town. We had a little pizza party here in the room and a good time. I kicked everybody out a bit ago so I could get to the midnight poking and prodding and meds, finish this post out and get some sleep myself. A bit of an insomnia bout last night so I'm pretty wiped out tonight. Since I'm mobile and doing really well, I am low on the priority list for the shift nurses. Which equals a good thing because they don't come in so often to check on me and unless they need to take vitals or make a change to my IV, they'll just leave if they see that I'm sleeping. So there are good 3-4 hour shifts of sleeping that can be accomplished. A very nice perk indeed. Hopefully by this time tomorrow I'll be happily ensconced in my own bed with unlimited sleeping shifts available. For tonight, again, I'll have to be satisfied with just my pillow. Oh, and I miss my kitties.