Archive for the 'me vs. cancer = I win' Category

Sep 13 2011

rough week, sloooooowly improving

Well I took a short break from PT these first two weeks post-surgery; I just couldn’t make myself keep getting up and pushing physically when I was already pushing mentally and emotionally to heal, heal, heal, keep watch on house management, help The Teen figure out a better after school strategy in the midst of a surge of attitude and angst, hurt hurt hurt, figure out writing kickstarts, wait for shoes to drop, heal and hurt, hurt and heal.  It probably wasn’t the best choice; keeping moving and exercising really is one of the better and faster paths to health, but I just ran out of self-push on that front.  Spent it all elsewhere.  I’ll be slowly starting back on it this week, but carefully, of course.

Today I went into the surgeon’s office for a follow-up, and of course, not as fast a healing as I’d like.  Well, I was warned about twice the healing time for this, plus less activity I’m sure hasn’t helped.  But there’s nothing terrible happening, just slow healing.  I had half of the staples removed on half of my right side (heh), and half of the staples removed on all of the left side (every other one).  I was told that it’s looking really good, even though it’s still producing quite a lot of fluid and is swollen, so none of the four drains came out. (A mixed blessing; it would be nice to have healed enough for drains to come out, but as I recall, that hurts, quite a bit.) I actually think one of my JP drain suction cups has a leak somewhere (based on something that happened tonight), I’ll get them to take a look tomorrow.  I have another follow-up a week from today with this surgeon, I expect at that point I’ll get at least half the drains out and switch from staples to surgistrips.  He also told me to use hydrogen peroxide on the drain openings, which continue to hurt more than most other places on my chest (the swollen areas under my arms are a mix of numb and big hurting).  The backs of my arms are also really painful and swollen, so we’ve been wrapping them to try and keep the fluid draining out and toward the center of the body.  I have gained by far the most weight and am the heaviest I’ve ever been, due to the summer’s inactivity and the steroid drugs I’m on; however the good news is I’ve already lost 30 of that in the last two weeks (mostly fluid, though 8 pounds of it was breast, hehe).

I have another appointment tomorrow, this one a big one with my favorite oncologist, the fabulous Dr. Carlos Rubin de Celis (for anyone looking in the Austin area, I’d commute to follow this guy and keep his services, that’s how good he is).  I get some lab work done, I think we’ll be scheduling some scans; it’s time for the monthly medication renewal so we’ll also be discussing that.  I had been starting to ramp down on pain meds but the surgery pushed me back up to where I was, and in fact I’ve been using a few more of the pops than before.  I think it’ll be ok; he trusts me to pay attention to my body and tell him what’s going on, and I trust him to listen and help me change and stay on top of things as needed for best pain management; it’s a good arrangement.   We have a plan for how to affordably start me on tamoxifen (an anti-estrogen drug) that we’ll be discussing tomorrow again to make sure it’ll work the way we think it will.  I’ll also be receiving my next Aridia infusion.  This is a bone treatment that he says I’ll be on once a month for the next two years at least.  It’s designed to both prevent any future cancer encroachment into the bony areas that were previously affected by the metastases, as well as help assist in the healing of those areas previously damaged.  I’m not sure about how Aridia itself affects my body, side-effect-wise; I probably won’t have a clear picture of that for the next couple of months as it’ll be all mixed up in the mastectomy healing process, but I’ll keep reporting what I notice, when I do.  I’ll learn more about tamoxifen side effects tomorrow as well.  A walking pharmaceutical package, that’s me for the long term, I guess.

Realistically, I’ll ramp down from the pain meds over time, we hope; the damage is still very much there but there’s good reason and hope to believe that it will lessen over time even if not go away entirely.  My mom and I even came up with a clever solution with the help of a nurse for weaning off the pops when the time comes. (I don’t have an addictive personality, but recognize that habitual behavior is its own thing, so I’ll switch to mini tootsie pops or dum-dum pops when I feel the habit but don’t need the drug.)

(TMI warning) One concerning side effect that continues is near-incontinence; I have a much shortened time warning on when I need to urinate, especially when waking up.  This is likely from the radiation, and the RadOnc believes it will fix over time; she says that for those whom it’s permanent damage, it happens during the day as well.  While I’ve had it happen during the day, it’s always when I’m concentrating too much on things like writing, and ignoring the early signals.  If I don’t ignore the signals, it’s not a problem, so the daytime stuff is my own fault and I just have to wait for the nighttime stuff to heal itself over time.  There have been very few accidents thanks to the bedside facility, several close calls and only a handful of missed ones.   (Tonight for example, woke up fine and no misses! yay)

I’ve also had some radiation recall come up, which is skin irritation and/or discoloration (in my case definitely irritation, bah) that is exacerbated by the time spent in bed, so that will hopefully lessen as I get up and moving around more again.  This most often happens when you have to have extra radiation treatments, which if you recall I had to get a second round of 20 radiation doses while on chemotherapy, a scenario they try to avoid when possible due to just such side effects but which was necessary in my case.

This coming weekend links post has some cancer ones in there.  I don’t like to think about the death aspect of it, how close that sits over my shoulder, even though realistically I know that death sits no further away from any of us, really. (Wildfires, car accidents, random violence, anything can snap out that light much more immediately than what I’ve fought off twice now.)  I hope that my loved ones can all continue to treasure my presence and what I give to their lives by being in it; the more I heal the more I have to give, the more I love to give.  The healthier I am, the more I can do and the happier I’ll be, and I hope my friends and family can believe in me along those lines, that you are all so important for me to have and hold and love and lust for and live for.  It’s been a vicious and long road, with no promises there won’t be future sharp rocks along the way, but I’m passionate and dedicated to the ones I love and I WILL keep climbing those rocks.  I look forward to feeling your supportive presences alongside me as I do so.  Patience is one of the hardest traits to keep hold of during these crises and healing times, and sometimes even I want to scream   at the universe for a fucking break already.  Having you there with me makes such a huge difference; even if we’re screaming at the unfairness of it all together, that “together” is what makes it so much easier for me to keep going, keep healing, keep surviving, keep thriving.

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Sep 12 2011

Polling readers: creative fun

I have my own ideas I’m pondering, but I’d like to hear your thoughts as well.  What more would you like to see on this blog and website?  I’m loving the things I’m finding like the 5 Minute Flash Fiction contest by Leah Petersen, or when writers give away advance copies of their new releases in mini-contests, or blogathons, or all sorts of creative and/or collaborative projects or one-offs that you can trip over all across the ‘net.

So here we already have my talks in random order about my cancer journey, perhaps (likely) to be more organized later, and weekend links from the interesting things I find during my own internet journeys, but tell me, oh Fearless Readers, what else would you like to see here, semi-regularly or randomly?  Or on my Twitter account, for example?  I keep thinking there’s something on the tip of my brain I could do with that but so far it still hasn’t gelled into useful creative output.  More free fiction, assuming my creative well keeps filling?   I’m not reading much in the way of books lately, but discussions on various shows I’m watching from a writer perspective?  What appeals to you from other writer blogs that you think would represent well here?

Since I’m doing my own ponderings along these lines I can’t promise delivery upon request, but on the other side, you can’t get what you don’t ask for, either.  Anyone?  Bueller?  I’m definitely interested in collaborative and cross-genre, or even cross-art projects, and still have a good one in the working stages coming to you soon from the first round of the cancer experience, once we work out some final visual details and I can move forward onto other ambitious and provocative projects.  After all, though none of us know how long we have here to get done our most ambitious and beautiful dreams, I’ve just received some more pointed reminders than most.  And I have some great friends, loved ones, and children to leave legacy for…

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Sep 04 2011

Cleaning up around the bloghouse

While this blog does sometimes feel like all cancer, all the time, I do remind myself that one, I get a lot of good feedback on most of the cancer posts, and some of them seem to be actually touching people’s lives in positive ways (and even a couple of times in life-saving ways, a humbling thought indeed).  Two, everything is connected in our lives; you can’t dissect out one thing to talk about and not have it lead to something else similar or related, especially in the case of cancer, which affects everything else in your life and extends out into other lives that touch yours as well, whether you want it to or not.  And three, it’s obvious I’m making effort to not have this space be all about cancer, even though I plan to keep blogging regularly about it, and how it has and does affect me.  I think writing about it matters to me and to others and makes some kind of difference in the world, even if I won’t always see and know what that diffference might be.

Since I’m also a writer and it is a writer’s blog, I’ll be taking the kind suggestions of a few loved ones and cleaning up around the blog a bit, making some organizational changes for better ease of reading and following the various threads.  Those of you here for the Cancer Chronicles might want an easier way to skip the Weekend Links, for example (though most of those are pretty darn cool).  It’s obviously going to be a slow, convalescent work in progress, hampered by a particularly annoying cat, continued exhaustion to the point of sleeping on the computer, and other such things, up to and including attempts to post up some fiction left lying around collecting some dust.  I’ll be deciding what to keep sending out, what to give away for free here, and what to retire as early pre-cancer works made untouchable through time and trauma. Glad to see most of you plan to stick around, but for now I must change dressings and measure fluids and other such exciting post-surgical shenanigans.

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Sep 01 2011

Actual nearly-on-time upate

Worst experience yet here at St. David’s.  Just goes to show once again that even good hospitals can have bureaucratic screw-ups and you can’t ever relax your vigilance, and even then sometimes things will come up.  I called the surgical oncologist’s office (Dr. Cherico) last week, worried about the whole pain management issue while in the hospital, and they assured me that they had discussed it with Dr. de Celis’s office (medical oncologist, currently de facto primary care physician though I’ll have to pick one of those eventually, definitely on his recommendation) was going to be taking care of all of that.  OK, good.

The hospital called me for the standard slew of pre-operative questions later last week, and I told them about the pain management issue and they took down a list of all the drugs and dosages I was currently on. They knew Dr. de Celis was going to be taking care of it, and that I was going to be at least an overnight stay if not a few days stay according to Dr. Cherico (the surgical oncologist) due to the circumtances (only a month out from chemo, being on steorid drugs, lack of stable mobility, etc.) Good.  Ok.

Then I got paranoid on Monday, so I called Dr. de Celis’s office, got his assistant, and explained my concerns to her.  She assured me that they knew about it, and were going to write the orders, and it would be taken care of.  Ok, yay!  I couldn’t think of anyone else I could call that would have anything to do with this, so I was as calm as I could be on that front even though I really wasn’t looking forward at all to more pain just when I was starting to get a lessening of all that from the steadiness of the pain regimen and the OT and PT exercises I was doing and just the general up and moving around and healing that was taking place.  It seems like the past two years have been Sisyphean in everything that has happened to me and I’m so very very tired of rolling that rock.

So we get to the hospital a bit late but that’s not a problem, we go through admissions quickly since we’d done the pre-op over the phone and they put me in a room.  Dr. Cherico comes in, asks if I have questions, we talk again about Dr. de Celis writing the orders for the pain stuff and Cherico knew about that concern already and would give de Celis a call on that as soon as he left the room to make sure, and to reminded me expect to stay at least overnight.  Right. Ok.  I ask a couple more questions assuring they would remove allllll the breast tissue from both sides because I really didn’t want to have to do this anymore, and he agreed that was a top priorty and that he was also going to be removing the group of lymph nodes on the right side (the same that were removed last time on the left), and wasn’t planning to remove any more from the left side, just the remaining tissue.  (I was also told by one of the nurses that Dr. Cherico was the one who had removed her gall bladder and was considered by those who worked there to be the top surgeon in the place, so that was another reassuring bit.)

Then, the Recovery Room.  Ahh yes, you may remember from the first surgery back last year that that part was the worst part of the whole process, and here it was again.  The doctor in charge there apparently hadn’t gotten the many messages about getting me to my room and onto my standard pain regimen as quickly as possible, and therefore wouldn’t let me leave until my pain was “under control”.  As clearly as I could through the agony and blurrines of post-op awakening I begged and pleaded with them to let me go to my room and to please give me my normal doses because this wasn’t going to get any better as it was, but who in those areas listens to a patient coing out of an anesthetic fog? No one, that’s who.  After keeping me in agony for THREE HOURS LONGER than they should have, they finally gave up and decided to put me in a room since they couldn’t think of anything else to do where they were and the doctor down there wasn’t going to give me more than the 250 mcgs of fentanyl she had already given (I’m currently on 900 mcgs and yes I know that would normallly knock out a horse (but remember, Special Medical Snowflake).

On the other end of the fuck-up, fron the time of the consult with Dr. Cherico a week and a half before the surgery, we knew it was going to be an overnight stay and as you can see above that was repeated with each phone call.  I’m not sure who screwed up that part, but the fifth floor nurses didn’t even get told I was needing a room much less the overnight part until ONE HOUR before I was sent to the room.  They were literally running up and down the halls even after I got there, trying to get everything together that I needed as I was moaning with pain (the transfer between beds was particularly hideously painful).

My poor folks (Dad, step-mom, step-dad, and Nathan) Basically had to spend an entire afternoon and evening not being told much of anything, so I’m sure it was anxious-making for them as well, especially after it started to become apparent that someone had messed up somewhere.  Today (now yesterday) once they found out they started calling and lodging complaints, so I’ve been visited severaltimes by people including the manager of the post-op recovery room area with apologies and we were just following policy and whatevers.  My response has consistently been I called and told people ahead of time what needed to be done, and that should have been communicated, and when they called Cherico and heard that de Celis was in charge of pain management they should have called him and gotten the story correctly.

On the other side of the equation, the surgeon did tell them that the surgery went very well.  They got the mass, and 2800 mg of tissue from the right (which he said “that means a large breast”) and the 1000 mg that had remained on the left side from the last surgery.  Apparently I made him work a bit to get it all out, but it was a success and the mass was hard, which when I asked what that meant he said it could just be dead cells but he wouldn’t get the pathology report back ntil tomorrow (which is now today) and also wouldn’t know if the lymph nodes tested positive until then.  He also said they didn’t have to take muscle.  If the lymph nodes tested positive that would mean we’ll have to be more vigilant, since it highly increases the chances of more metastases.  Since we were planning on scanning every two months and continuing the anti-estrogen therapy and bone treatments anyway, we’ll be doing the first steps of what we can on the prevention side even if that is the case, so you, dear readers, will know more about that when I will.  If they test negative, of course that’s much better news, but since my cancer is genetically based that doesn’t really lessen the vigilant side of things.

Everything is draining as it should, I’ve already sat up for 45 minutes or so and stood up to go to the bedside commode, and am moving both arms (painfully), and my chest feels like it’s been peeled open, hacked on, had (non-essential) organs removed, and put back together.  So how was your day?

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Aug 29 2011

writerly triumphs, upcoming cancer fears

I’ve been nearly-steadily working on getting my creative well refilled after beating back death (again, from a fiercer battle this year than last), so the good news progress on that front is:

I made it to a few parts of ArmadilloCon this weekend. Friday was a disaster and life lesson two-by-four all in one; I tried to essentially go by myself (with walker strapped to wheelchair), and didn’t realize just how hard it would be to push myself around, especially since the hotel had far more carpet than I’d expected (I’d remembered large expanses of tile, which there were in main areas, but not where the panels were held).  I managed to make it through one panel simply due to stubbornness of will, then found a friend who very kindly took me home.  At home I cried in frustration and felt nearly sick from the exhaustion, and bitter about not getting to do any of the things I want to do, and upset that my “last hurrah” before surgery was such a bust.

Waking up Saturday in a better mood, I spent most of the day napping and late afternoon my brain kicked in, and we worked out a solution where my helper used the front carrier to strap on Wednesday (who was apparently a big hit at her first con) and go with me to push me to panels.  We arrived late enough that I was only able to attend two more panels, but at that point it was the principle of the thing and I saw friends and took notes and went to panels just like a real convention, my first since this time last year.  Psychologically it was a big success, and of course I’m exhausted and sore and spent most of the day in bed and will spend most of tomorrow resting (with maybe a bit more movement and PT exercises that I won’t be able to do right after Tuesday) but quite worth the effort and I’m grateful to my Mom for providing the badge fee and my helper and another two friends for providing the rides to get me to and from.

I did a “create first lines” exercise with my writing group that was fun for me and seemed so for the others who participated.  I even wrote a couple that tickled the glimmer of possibly an idea for story, maybe, somewhere in there.  So that was a success as far as I’m concerned.

One of the next steps as I see it is to get back in the habit of the “send stories out — collect rejections — send them back out” routine I’d been doing so well at last year, so I asked my writing group which stories of mine that I’ve previously submitted for critique came first to mind as ones they’d like to see back out circulating.  Two of the ones they suggested are ones that have been out there already for months, so I sent queries out on those two, and at least one of the others they mentioned doesn’t really need further editing at least at the moment, so I am planning to find a market and send it out tonight (unless, of course, I fall asleep over the keyboard first as I sometimes still do).

I may have come to a decision about the novel I’ve been slogging over for years, which I think deserves its own blog post as possibly an interesting writer-process blog entry, and I’ve identified two characters from other stories that I think will be the easiest to start back on trying to write when I finally start generating new creative content.  I even have great encouraging words on those from that same writer’s group.

And then the anger and frustration parts:

I’m just now starting to get to where I can do more than one or two things a day without being wiped out.  I mean, there’s no way even a couple of weeks ago that I would have been able to try again on the con attendance like I did this Friday and Saturday.  I can’t get a straight answer about how my doctor is going to handle my pain med regimen when I go back into the hospital for surgery on Tuesday and it’s been working so I’d really like to not have to go backward on that end of things.  I’m angry.  I make the joke about having to get three mastectomies for two breasts but it’s not really funny, except in the life irony sort of way, it sucks. I trust my doctors this time but I’m still so scared.  So scared.  And admitting that in front of the world and everyone is hard, even if it’s a no-brainer, because I’m also the strong, beautiful, determined, fighter, role-model, hero, STILL ALIVE person that people talk about in the comments you leave here and tell me elsewhere.

But this is so hard.  So very very hard.  And scary, and angry-making, and I don’t want to do it even though it’s right and necessary to do.  And I wish I had more time to heal and enjoy the energy to write and help The Teen with his homework and feed Wednesday rice cereal messy-o-meals because on Tuesday I have to slog back from the edge of the abyss AGAIN in order to be able to do those things and I won’t be able to right away, and what if it takes long enough to heal and my baby girl grows fast enough that I’ll never get to safely hold her again because she’ll be too heavy for my arms to safely hold?

And I can heal, and I will, and I’ll even try to write about it so you know what it’s like as best as you can from reading about it.  But here I am, bloated enough from bed-rest and long-term steroid meds that I don’t look like me in the mirror anymore, emotionally naked, and the fear is so strong that writing it is the only thing that makes it smaller.

Caging it in words to show for you like a zoo exhibit gives me some iota of illusory control over the process, so here I am, and here it is:  I go in for double mastectomies this Tuesday, at 1 pm CDT, surgery expected to last 3 hours.  On the right side they will also take several lymph nodes along with the breast, and the remaining cancerous mass that has shrunk through chemotherapy to 2 cm from its previously baseball-sized visible lump under my arm.  The left side will be cleaning out the far-too-much breast tissue they left from last year’s mastectomy, though they don’t expect to have to remove any more lymph nodes.  They will be removing every bit of breast tissue they can find on both sides.  They do not expect to have to remove muscle, so send good energy that way if you have it to spare, as I would be left with lifelong arthritic-like symptoms if they have to take any of the muscle in the area, and the lymphedema brings enough of its own long-term side effects that I’d really prefer no more added to the mix.  They expect, given how close this is happening to the recent chemotherapy and other factors, that my healing time will be double the normal expected rate –so at least 12 weeks of active healing — and that doesn’t count the months of PT to get as much back of normal movement and function in the area as possible.  And that there will be at least one night spent in the hospital, but possibly more depending on how my body responds; so soon after a 9-week stay in the hospital, that in itself seems discouraging.

I have no idea how much, if any, it will set back the progress I’ve made in getting back my writing creativity, but I expect at least some.  I may have a baby 3-pound netbook, but I recall from last year even that was too heavy to manipulate for the first several days after surgery.  So expect a pause in blogging, though you might see me update on Facebook since I can do that from my phone.  I have a voice recorder I’m going to try to make sure is functional tomorrow as part of packing and prepping for going back in, in case I do manage to snag writing ideas out of this mess.

So the positive thoughts to send my way are: all breast tissue gone, no muscle removed, and speedy healing with no complications.  I’d really like some time and space to live this beautiful life with you beautiful people that surround me, and enough pain-less (not naive enough to say painless) functionality to enjoy it as fully as I know how.  And that’s pretty damn full — there’s nothing like two fierce battles with death to enhance the joy of living life.

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Aug 22 2011

From Death Into Life Through Truth (second verse, harder than the first)

We all know there are different ways to tell the truth.  I recall vividly a conversation with my parents when I was quite young — no more than six years old or so — where I had been caught in some lie (probably a minor one, don’t remember those sorts of details from the event), and they sat me down and had one of those Serious Talks about trust and the breaking thereof and why truthtelling was so important.  I don’t know what particular magic combination of words they said and my own personality were at work that evening, but it resulted in me not uttering a known or intentional lie for the next ten years, literally.

I was a strange child.

***

You have choices, even with bad doctors, but with the good ones, and the fantastic ones as well.  You have rights, as a patient, to know your diagnosis, to see your health paperwork, to have the results explained to you. There are ways, and then there are ways, of revealing the facts, of telling the truth of what is happening to you in a serious medical situation.  The finest ones know that one’s emotional state does matter in the battle for life, and the mind matters in affecting your matter.   The great ones will choose carefully how they reveal the truth of what is happening to you, all the while giving you the option to choose for yourself how and how much and when to know, or know more.

I have some of the best doctors I’ve ever heard of, and I know it’s part of why I’m still here writing this entry.

I am so very thankful of how some of the facts were revealed, and when.  This battle would have been so much harder had I known the full details and descriptions of everything going on from the very beginning, while trying to live through the worst of the pain that was filling every moment.  Meaning, when I went into the hospital the first time this year, after we’d done the C-section and could do more scans and they could find out more of what was happening inside me, they came to my room and explained what was wrong.

They told us the breast cancer had come back, confirmed that the very visible baseball-sized lump that prevented me from putting my right arm all the way down was indeed another tumor.  They explained that the previous diagnosis from last year had been incorrect, that it was an estrogen-receptor-positive cancer, and so pregnancy hormones had exacerbated the situation.  That it had metastasized.  And where: into the hip, and they gave the gory details on that since the pain from that one was what had driven me into the hospital at a 10+ agony level (over 8 cm large, partially in soft tissue and partially into the bone, wrapped around the sciatic nerve); and into the spine, where a tumor filled most of the the bony process of T12; and into other bones like the ribs; and into the liver; and into the lungs. And later on, discovering the T7 tumor pressing directly against the spinal cord and causing the left leg paralyzation and second hospital trip (this time in an ambulance) and two-month stay and extra radiation (not usually done with chemo — and another story). All the facts, ma’am.

And so treatment was discussed.  Such an aggressive cancer required aggressive treatment, and the facts that I was young and had otherwise a healthy immune system (and the special medical snowflake aspect we discovered later but wasn’t known then) would help in fighting it, and in dealing with the side effects of the aggressive treatment.  And so it did, and you’ll get that part of the story too, as we go along in later blog posts.  We didn’t spend much time in that first conversation, with my spouse and parents gathered around, in discussing exact cancer stage and type, or prognosis lengths, or too many treatment details other than the basics of what we’d be doing to fight it.  I kept asking questions; Dr. Carlos Rubin de Celis kept answering them.  He didn’t shy away from the tears as I asked, or try to shut me down as a layperson unable to understand, or get impatient when I repeated a question I’d already asked before while trying to understand better.  Every room visit of his I’d have a page full of questions, and he never acted rushed in spending time answering them.  And still, his skill at how he gave the facts of what was happening to my body throughout this process did not become fully apparent until a week ago, when I attended the appointment where we discussed the “new baseline” from the latest scans.  From where we began, to where we now are after 34 radiation sessions and 6 chemotherapy rounds and endless experimentation with pain management and two months in the hospital.  Basically, where we go from here.

And I learned fully why I’d overheard some of the nurses referring to me as a terminal cancer patient, earlier on in the hospital stay.

Hip: from where it began (described above), to now completely gone.  I got to see the before/after picture of this one, it now looks identical to the other hip, and completely normal. (On the surface; one can’t see as easily on the basic picture the many many little holes the tumor left behind in the bones that we will be treating for the next two years at least — but that’s also another story for a later post.)

T7: completely clean.  (Also got to see this “before and after” picture.)  Massive residual pain from damaged areas that will heal slowly, but will heal.  (Already I need slightly less pain meds than I did when I got home, and that will continue to decrease.)  The area around the spinal canal is clean all the way up.

Spine: there had been signs of cancer is essentially every other vertebra throughout the lumbar and thoracic region.  I asked for and was shown these pictures when I was ready (around the middle of treatments), and the light and dark areas alternated, with light being signs of cancer, in an almost regular pattern.  Now, all dark and clean.

T12:  Presumed clean.  Since this was entirely within the bone it’s a bit harder to confirm without a biopsy, and both the doctor and myself are hesitant to do that; what if we drill into the one area that is solidly keeping that vertebra strong enough to heal properly?  So we’re going by monitoring my pain and mobility and in how it compares to the others in the scans, since it was one of the three areas receiving direct radiation treatments.  Dark and no more painful than anywhere else that hurts, we’re calling it clean.

Ribs/sternum: clean.

Lungs: From a “paint-splattered” start with small spots scattered all over, to nothing visible. Clean.

Breasts: from the original visible underarm large lump to a 2.4 cm mass that can’t even be easily palpated.  The surgical oncologist,  Dr. Cherico (a quirky guy who’s been in the business since before port catheters were invented, wears cowboy boots to work, and apparently plays country music during surgeries) laughed when I said I want all the breast tissue gone if he has to vacuum it out, and assured me that he’ll be removing all the breast tissue as well as as many lymph nodes as needed.  He also doesn’t expect to have to remove muscle, thankfully (though if he finds differently on the operating table he’ll do what’s needed for clean margins) and answered my questions fully and carefully: a fine match for Dr. Rubin de Celis on my oncologist team. But the mastectomies are yet another post topic.

Liver:   Here is the part that inspired the tone of this post.  The only remaining anything that can be found after this long, painful, and scary trial are four very faint spots on the liver, none larger than an inch in diameter and easily missed if you weren’t looking for them.  But from where it began…well, the only colorful descriptor I’d heard before was that my liver when I came into the hospital looked “like swiss cheese”; last week I found out that what that little phrase meant was that the original scans showed tumors that were too numerous to count, several of them up to softball-sized diameters.   All I could think was “where was the liver in all of that?  How was there anything to grow back? No wonder they treated me so nicely, they weren’t expecting me to leave the hospital after I’d checked in with all that.”

And that type of truthful description of what was happening inside me was exactly what I didn’t need to hear, back when this all started.  The fear, the pain, the terrible nature of what I was facing was already so great, to have heard that would have brought the despair to a level I’m not so sure I could have come back from.  I’m sure if I’d asked to see all the pictures from the beginning they would have shown them to me, and explained whatever I’d asked about what I was seeing.  But instead we got a truthful explanation, I didn’t see pictures until there was actual progress through the treatment, and I didn’t have to face night after night of nightmarish images parading through my head of disintegrating organs and bones made even more realistic by the actual images of that happening.  (Sort of like the difference between reading a book and watching its movie; the book frees the imagination to wander all over a landscape, the movie tends to lock in one’s imagery to a set picture that is terribly hard to change to something different once you’ve seen it.)

So, the conclusion: from terminal level, how-is-my-body-still-together metastasis, I have 5 spots left (all an inch or less in size), one of which will be gone in less than two weeks, and the other four which could still conceivably be those softball-sized tumors finishing dying (the scans were taken a little over two weeks after the last chemo treatment).

This is what my doctor calls an emphatic success.  We will continue to scan every two months. I’ll be put on anti-estrogen medicine.  and if the worst happens and those spots decide to grow instead of fade away, my doctor casually and confidently states that “he has plenty more tricks up his sleeve” that we haven’t even begun to try.

Me vs. cancer = I win.  Again.

8 responses so far

Aug 19 2011

Thoughts on Doing Too Much

There’s several aspects to the phrase “doing too much”, not all of them bad. I’ll explore some of my thoughts on this here, but do feel free to add your own perspective in the comments.

Sometimes you gotta.

We’ve discussed that many a time here in the blog, so I won’t go into it again this soon, but when a thing must be done, and you’re the one around to do it, well…

And then there’s defining “too much”, which is a phrase whose definition really changes daily, when you think about it.  Stamina, willpower, energy, and more aren’t constants, they’re variables; and you’re unwise to treat them differently.

Sometimes I think a large part of life lessons revolve around learning our limits.  What do “limits” mean on that daily changing basis; when to push them and when to accept them; when to keep them and when to free yourself from them however you can.

There’s not much out there like facing terminal life conditions to make oneself face up to learning these lessons.  Too many of us get an easy pass to skirt around the issue.  I’m not saying life still isn’t hard, for most of us, much of the time.  But lessons like how to say “no this is too much for me right now” or “I need help with this, I can not do it on my own” are ones I’ve noticed many of us get to avoid facing head on.

When we finally must ask these things, reach out for this help, it often comes with a whole heap of guilt — and not always internal, either.  Asking for help is often scary, for those doing the asking and those receiving the request.  And if your requests for help have to change from “hey, I could use a little help on finishing this task,” to “help me clean up the bedsheets I just wet myself on”, your perspective becomes much harder to maintain.

But this is supposed to be about doing too much, isn’t it?

Anyone who knows me knows that I run at the equivalent of 110% nearly every moment.  Perhaps a slight exaggeration, but only a bit; I throw my full self into whatever I do, try to be as fully present in each moment as possible, whether it’s building and reorganizing a first aid kit (a long-overdue task that’s been on the to-do list for months that was completed today), feeding a 4-month-old a 6-month-old-sized helping of rice cereal and enjoying watching her race through it, or passing out over a keyboard as I atttempt to reorganize and make sense of a medication regimen that will keep me as pain-free and functional as possible while giving myself more space between constantly taking medications.  (All tasks done today, not counting the occupational therapist appointment, the physical therapist appointment, the open house meet-n-greet for The Teen’s school, or the several hours’ visit and chat about business and other sundry topics with a friend using our kitchen to make and share tasty banana bread.)

Now mind you, the only out-of-house activity of all of those was the school open house, but that’s still more than some people I know do in a week, much less a day, much less three weeks out from a two-month hospital stay.  And sure, I’m exhausted and I hurt (but I always hurt these days, and have been told to expect that I may always have some chronic pain issues from the damage I took to bones and nerves from this metastasis).  When one has experienced enough pain to completely incapacitate, it’s an effort to readjust one’s pain scale to know when to pay attention and slow down.  That’s a mental adjustment I do work on, daily.  Ha, but then again, that’s another task as well, isn’t it?

Tomorrow I’ll leave the house again; this time for an informal support group luncheon.  (And very much hopefully picking up the rest of my medications, or it will be a much more painful weekend than I’ve had for a while.)  I’ve never been to a support group, even an informal one, so it’s a new experience.  The rest of the day is scheduled around “resting”; visiting with my mother, discussing salary issues with the live-in help, hopefully a household board game in the evening for some fun.

And yet there are still items on the to-do list that have sat there, some for months (amazing how much cancer interrupts life flow).  This blog post has been written on all week, and isn’t the one most of you are waiting to read (the scans were overall good, and details will be forthcoming, I promise).  My physical therapist doesn’t understand why I can’t find time to do my PT exercises twice each day, and she’s unfortunately right in that if I did so, my endurance would increase accordingly and I could get more done of what I want or need to get done.

I think that you’ve done “too much” when your body shuts you down against your will.  If I want to finish this post, but I wake up 5 hours from now with dffffffffffffffffffffffffffffffffffffffffffffffffffff across a paragraph’s worth of screen, it’s quite likely I did more than I “should have”.  But that’s an “after the fact” tell, not a signal to stop before I get to that point.  And I do agree that sleep should get its own fair 110% along with the rest of daily activities, though that’s a lesson it’s taken a stubborn while to accept and learn.

It’s made harder by the fact that other people can’t tell you what your “too much” is.  When I say I need to write more, and someone responds that I really need to focus on visualizing a healthy self and resting and taking care of me before “worrying” about more writing, on one level they’re right (especially their own level, of what they can imagine they’d need to do under similar circumstances — may none of you ever have those).  But when a blog post or fiction snippet I finish at four in the morning rejuvenates my soul, gives peace to my mind, allows me to actually, deeply, rest for three solid hours, it becomes harder to believe that taking the time to write was “too much”.  And you can’t always know ahead of time that I “should have” made that choice instead of taking my ambien and trying for just the resting part.

So, conclusion:  No easy answers on what “too much” is, when to know when you’ve found it, or how to avoid it.  But I’d adore for this to become a discussion in its own right and hear about your own experiences or attempts to control this urge.  If you have any, share your thoughts here.

3 responses so far

Aug 09 2011

Writing contemplations

There are too many things on my mind lately.  (Not that this is unusual.)

Prioritizing where energy is spent is of course at the top, as has been evident from several recent posts here on the blog.

I need to spend more time each day meditating and otherwise focusing on a healthy me, a healthy body, in order for any of the other things to get done.  This has been so much harder to do this time around than last year’s cancer experience, for several reasons.  Some of the reasons I’ve discussed; some would cause more emotional drama to discuss publicly than I’m sure I’m willing to take on, which becomes its own writer dilemma of sorts — which shades of truth to tell?  I admire writers like Jay Lake, who is raw and honest and high-disclosure about all aspects of his travels through being a writer with cancer, and to some extent I try to emulate that attitude in my own style here.

Part of why to share these experiences is important is because so many people don’t talk about it. “The Big C”; isn’t that a TV show or something?  Not one I watch, obviously.  I think Hollywood could do some justice to the topic…but I think they’d get some important things wrong, or left off entirely.  And yet the same combination of disclosure and obfuscation happens here, and I suspect in Jay’s blog, and any others brave or brash enough to throw their trials out there for the world to read.  Instead you get these prose snapshots, written moments in time subject to interpretation of what lies underneath the surface of the textual picture, never the whole story.

So my top goal at the moment is to reflect each day, for some period of time, on healing, on what a healthy body and mind and self feels like: to remember.  Because the illness becomes the reality so very quickly.  It’s like the PT exercises (physical therapy); reteaching the muscles how to properly align and carry the body because after long enough, they literally don’t remember.  “Proper alignment” doesn’t feel “proper”, it feels strange, off, even unnatural.  Remembering that I can heal, am healing, WILL heal that along with the rest of me (or now have a darn good chance of doing so) has a similar mix of dream-like truth and un-reality.

Family is the next level of returning to self and life motivation.  There’s so much to blog about on this topic that it’ll have to wait for its own several posts, since I can only put so many written pieces on the screen at one time.  It’s definitely a teamwork effort, and there are several team combinations within any family.  One of the first promises made to the team of me and my new baby was “You keep me alive, and I’ll keep you alive.”  Regardless of your religious or metaphysical beliefs, this bargain feels real and genuinely made on both sides.  So many of the circumstances surrounding Wednesday’s existence can be said to reflect back on that bargain as I held her newly-arrived self.  I know that I pay back pieces of that deal daily in caring for her basic needs, but I hope when the time comes to pay back the larger portion of that deal that I give as good as I’ve received so far.

And then, the writing.  A career I’ve dedicated myself to building for the past five years and more, and one which feels like it “should be” so much further along than it is.  This won’t end up one of those writer angst posts, since that hasn’t really been an issue for me for several of those years.  I’m confident that the combination of my business knowledge, training, and attitude along with with my dedication to master the skills and art of the writing craft will result in some measure of what I can designate “success” in this field.  The roadblocks along the way, however: ongoing and large, and so discouraging, and so tiring to keep hurdling, keep believing.

Yet here, too, even in the midst of the hardest battle for my life to date, there is visible progress.  I keep coming back to blogging, and at least a semi-regular webpresence is wise for any writer these days.  And I certainly have no end of material to blog about, across multiple categories.  There is so much emotional distance between the stories I already have written and who I am after this latest round of struggle to stay alive that it’s hard to send out those stories again, to get back into the routine of submission, rejection, re-submission.  I think it’s a necessary step, however, even if just to get that habit back; the stories do no more good sitting quiescent in a file than as a guilty albatross.  I skeptically contemplate taking one of the workshop classes.  I bemoan the lack of energy to attend the conventions where I enjoy so much and derive so many good writerly things from attending panels and meeting other people with similar passions for the written word to my own.

So I have to believe that these, too, will repair, resurge, resurrect, as I continue to return to that basic step of envisioning a remission-filled and healthy me.  I suspect some of my former projects will be long-term trunked — perhaps not taken out again.  I hope not, as the thought fills me with sadness; but it is also true that the person who began those projects is not the person who is typing these words anymore.  My goodness would I like to attend a writer panel about THAT topic at a con, to hear what other writers who have experienced similar life changes have to say along those lines.  I suspect some stories will survive in much-changed form, or be finished through sheer stubbornness even if not honed and finely-tuned to publishable state.

And I suspect Callie will return, for those of you worried about that one and following the Chrysalis story thread, hehe. And there will be new stories, some fragile and delicate and beautiful, some fierce and raw and gripping, some quietly moving or laughingly skittery-shallow or filled with shades of gray and rainbows all at once — just like this life I fight to keep living.  I hope to keep having you — and an ever-increasing more of you — there to share it with me.

3 responses so far

Jul 29 2011

Home Again, Home Again (too much Jiggedy-Jog)

Discharge ended up being Thursday instead of Wednesday, due to (Body Process Alert) several days of diarrhea that was a first as a symptom during all this and since it lasted 3 days in a row (while in the hospital, a week all together) they wanted to hold me for testing.  This was disappointing of course, but no infection found no reason to delay further discharge.

A week later and i find myself almost wishing I’d stayed in another few days.   Not because it was fun in the hospital, but there have been tests and appointments every day since I was released and it’s incredibly exhausting.  I also had to get my first blood transfusion before being released, which on the one hand feels like a set-back, but on the other hand according to the doc is something I probably should have already had to do, so my Special Medical Powers have come through again.  Managing the meds is still a learning curve but way easier thanks to Living in the Future (smartphone app that is a great med tracker).

Anyway, a white blood cell count booster shot every day from Thursday through Tuesday’s chemo, another WBC booster on Wednesday, nurses coming to the home twice to check on me, an occupational therapist yesterday, and physical therapist tomorrow…all of which involve walking and movement when my main exercise for two months has been up and down a hospital hall and around my hospital room make for a wiped out Reesa.  I’ve still managed to go out to eat with family (bald head, walker, and face masks will get you some funny looks in public, did you know?) and eat way too many Reese’s Pieces, and get great baby time (which is good but itself exhausting), so it hasn’t been all bad.

The live-in help is working out well so far, getting along with the family members and learning the ropes of the job.  Since we’re inventing the job as we go along it’s a bit of a creative process; I expect it to take a few more weeks to really settle down into a good familiar routine.  It’s complicated by the fact that since I haven’t been home for two months everything is rather disorganized, and the urge is of course to Clean/Organize All the Things!! all at once.  Ha.  Instead we’re taking it a piece or two a day, which is much smarter and still results in visible, even if slower, progress. Training the other household members to be aware of leaving deathtraps in the thoroughfares (like shoes and such) isn’t as difficult as I’d thought it would be but is still ongoing.  Training myself to do less on my own and ask for more help from the help we’re paying for is a harder process but one I’m working on and improving as well.

Visitors and gifts of chocolate milkshakes (my current obsessive treat when I’m not eating Reese’s products) or other food/gifts/pleasant time shared are still quite welcome even now that I’m out of the hospital.  I’ll still be under neutropenic restrictions for the next few weeks so send your love from afar if you or people you’ve been around are contagiously sick (allergies don’t count, sick co-workers and children do).  Depending on energy levels I might even be able to go out with you on a shared activity such as a quiet lunch!  Otherwise, if I’m not occupied with appointments or baby time I’m still attempting to write and work while passing out over the keyboard, so not much seems changed from the hospital quite yet.  (I even have a hospital bed at home to sleep in to help retrain my body to sleep in different positions.)  though last night I had my first REM sleep that was completely disconnected from real-world happenings in months, so that’s some progress at any rate.

Lesson of the week: when going to a place I haven’t been before, make sure to take the prescribed wheelchair, as I’ll be traveling unknown distances and I can only go short distances in the walker.  Thankfully in this case, we were going to the hospital over the weekend for my WBC booster shots and since Dad was my ride I could use my stepmom’s motorized wheelchair (which was way more fun than my normal one anyway).

Ladies, don’t forget to do those monthly breast exams.  Not only do you not want breast cancer, you REALLY don’t want metastasized breast cancer destroying your skeletal system.  Much, much harder to bounce back from.  Even though I plan to, and shall to the most I possibly can, YOU can avoid that problem while it’s small and manageable and you aren’t paralyzed in your own kitchen or spending two months recovering in a hospital away from your new baby daughter or any of the other ridiculous things I’ve had to go through.  I’ll keep blogging about it, as I think it’s important for people to know what something like this is like, but never worry; this won’t become the all-cancer, all-the-time blog as I’m a Thriver, not just a Survivor, and there’s more to this life than living through cancer.

2 responses so far

Jul 18 2011

Crazy Hospital Happenings

You know it’s finally time to get out of here when the new admittee across the hall is not only ill, but suffering from some sort of dementia that is causing him to repeatedly yell “help!! help!! get out of my house!!” Which means the rest of us get late meds and short shrift as the poor overworked nurses have to deal with the crazy person they didn’t even get warned about.

Thankfully, it looks like discharge date might be sometime Wednesday.  We’ve got a trial-period live-in help, a pain regimen that is working CLOSE to what we want and may very likely work better once it’s more under my control and not dementia-distracted nurse control, and I’m working on my PT to rebuild my muscular system to help protect my poor hole-riddled skeletal system.

I’m sure you’re all anticipating the story of the saga of how I switched from a near-“terminal” cancer patient to one who is riding out Wednesday with a good chance of years’ more survival, and I think writing about it in bits and pieces will be good for me and my continued healing.  Along those lines, please any of you feel free to ask questions about particular things you’re interesting in hearing more about from the last two months, it will help me get some focus since, my goodness, there’s so very much to write about.

2 responses so far

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