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.
Wednesday, November 28, 2012
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.
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.
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.
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.
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.
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.
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.
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