Archive for the 'super-star surgeons' Category

Nov 13 2011

patient / doctor trust

Though I only saw my doctor once this week, a conversation with someone close to me made me thankful all over again at the trust that doctor gives in managing my own pain medication.  It’s been made clear to me that even though my very own doctor believes me to be mentally competent to track and manage my own pain levels and how the narcotics are affecting me, the belief is not shared by everyone in my life.  It’s more surprising than it should be, I suppose.  I men, falling asleep more and having periods of time of being unable to stay awake or grogginess aren’t just narcotic effects, they’re also body healing actions that the narcotics help encourage.  The morning slow start is due to both and again, manageable.  But I’m definitely more surprised than I should be to learn for sure that there are people out there who know and interact with me that believe the narcotics have heavily affected my thinking or my brain.  Especially when most people have commented how impressed they are about how lucid I am on this many narcotics, and again the mutual trust built and established with the doctor about that very issue.  I have my own fairly strong theories as to why the people who think me to be more incapacitated than I am think that way, but it’s not worth talking about here.  Just interesting to note how different people have reacted/are reacting to my situation.  Thank you to those of you who do see and believe in me.  And trust me, I’m quite looking forward to the days when I can start ramping down from this level of narcotics; it’ll mean that I’m finally getting better. And it IS true that my brain had to adapt to that level of drugs; instead of thirteen or more thought tracks at once, I’m reduced to about half that, and some days that IS frustrating.  But it’s nowhere near non-lucidity, and I think I know enough about myself to speak up if I can’t handle something.  Right now I can’t handle having to stay in the hospital, but there’s not much to be done about that nor is it related to my brain power or lack thereof.  Everyone send non-broken hip thoughts my way, please.  A strained muscle I can PT much easily back from than a femur or pelvic fracture, so send “intact” prayers, chants, thoughts, lit candles, or whatever way you send out good thoughts to others.

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Nov 03 2011

Still here…

This is the first day I’ve felt not like complete worn-out mud since getting here, strange since I had a CT scan this morning and an ultrasound yesterday morning.  My left arm continues to be swollen to horrible proportions and has very little mobility.  This is reversed from right after surgery, where my left side (which had less work done on it overall) was much more functional.  My right side is now the more functional side but that’s for very loose definitions of the word functional.  They’ll be keeping me here until my 10 day IV antibiotic treatment is done for whatever infection is somewhere in my body.  They still suspect the left side, either around the port, where the hole and drainage is, or where the blood clots are.  No really straight answer why I’m suddenly having multiple blood clots; it could be from the surgery, the tamoxifen, or some other source.  I still have the blood clot (pulmonary embolism) in my right lung.  I’ve been on oxygen since I’ve been here.  I’ve put in a couple of calls to talk to my medical oncologist, the one I’m always singing the praises of.  I feel like I need to hear the answers to some of my questions from him, as I trust him to play straight with me and let me know if these are just long-healing complications of a ridiculous medical situation all around or signs of something more concerning.   The infectious disease specialist seems to know his stuff and I believe him when he says he’s been in contact with my MedOnc and my surgeon. I still feel like I need the emotional reassurance of answers from a doctor I’ve spent time establishing a trust relationship with.

This in some ways has been worse than the cancer stay earlier this summer.  I’ve had far less visitors, so felt much more alone at times (my mom — good for her — did her own prophylactic mastectomies so she’s been unable to do the regular visits that I was enjoying from her).  Our live-in helper doesn’t have too many errands that bring her this way so I haven’t gotten to see my baby as much.  The Teen is upset at me being back in here and understandably is conflicted about visits.  Having infection (possibly on top of the flu a couple of weeks previously) and difficulty breathing has completely wiped out my stamina that I had built up through my daily PT.  I’ve mentioned it before, but despair is desperately hard to fight off when it’s one step forward three steps back.  Questions about why to keep fighting, to keep going, to keep writing, to keep anything start creeping in even when I know better, even when I have family and writing and all the same reasons to keep fighting, it’s gets harder and harder and more and more draining.  I need something to start picking up; going right; a sign that it’s not all just going to keep staying low.

I can take some secondary pleasure in others’ successes; I’m proud of my husband for finding one of his dream jobs, doing well at it, already getting a raise not too many months into it, and proving himself capable of the job.  But those are his successes, that he’s been waiting ages for and are his to fully enjoy now that he’s finally getting them.  It doesn’t lessen them at all for me to be able to applaud his success and still feel down about my own downward trend or holding pattern at best.  I’m super-pleased that he’s finally getting the kudos and rewards he deserves for the years and years of hard work he’s put in.  My mom had some early complications with her surgery but it’s fixed now, and she’s on the mend, and now out of the massive danger zone for getting the kind of cancer I had.  I’m in the hospital again, but it’s not for cancer, I’m still scanning clean for that with all these extra scans they’ve had to run.  So there’s a lot of things that objectively aren’t as bad as they were last time I was here.  I’ve had MUCH less problems with the pain management regimen and that’s been a huge blessing since if I’d had to deal with that on top of everything else I don’t know how I would manage.

But (TMI alert) my functionality has been almost completely wiped out.  I can’t shower on my own (I could before I got the infection, even though it was hard and hurt and took a long time).  I need assistance to clean myself if I have a bowel movement; my arms are limited in function enough that I can not even do that properly, and I’m sure readers can understand how embarrassing that is.  The fold of hip and stomach is having some skin breakdown issues (possibly relating as far back as radiation therapy).  Those of you with large breasts can understand my disappointment there, as I was looking forward to not having to worry about skin fungal issues after the large breasts were removed and no longer held moisture underneath the fold.

I don’t talk about all this to gross people out, though it does feel yucky and embarrassing; I talk about it because people don’t.  Talk about this kind of stuff.  and I suspect at least one or two of you are interested to know the less pleasant side, why the feelings of downness and despair come so easily when I jut beat cancer for the second time.

For those wondering about the results of the scans: the ultrasound and the CT both show blood clots in the left arm as well as the right lung.  I’ve been told that there aren’t good ways to treat this other than putting me on blood-thinning drugs and letting the blood clots slowly dissolve away by the body’s natural response.  Apparently a large pocket of fluid on the left side is gone, even though we haven’t been purging or massaging that area, so the infectious disease specialist seemed to feel this as a good sign of the body taking care of the fluid on its own and able to take care of the rest of the problems.  I’ll report more if I get a chance to talk to my MedOnc doctor, as again I trust him to give me non-sugarcoated answers.

I’ve gotten more rejections from the stories I sent out that  I wrote before the second cancer round.  Normally rejections are just part of the deal, but I’m more upset about those than usual as well.  Even making it to the personalized rejection part of the process isn’t a consolation.  At this point I’d sign up for a writer’s workshop like Viable Paradise, but of course won’t have the stamina and energy to do that for a quite a while, so will have to keep attempting to improve my work on my own/with the help of my editor and writer’s group.  I still feel like I have a handful of stories that I just haven’t matched to the right market yet.  I know that a story sale would energize me quite a bit on that front, so just have to keep trying.

I hope most of my Faithful Readers are having a better time out there than I am.  I do have one project that I’m continuing to enjoy and not lose steam on, so be looking for something new from me in the near future.  A Halloween launch would have been perfect but once again, lack of energy gets in the way of best intentions so you’ll have to be content with a less auspicious release date.  Feel free to comment on the content in this post, but I’d particfularly like to hear about good things happening your way lately.

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Sep 20 2011

wound tracking (TMI warning)

My underarm is not supposed to make a sound like air escaping from a blown-up balloon as you pinch it just enough to let air out from the blowing end.  There’s obviously a hole somewhere.  Thankfully the doc appointment is tomorrow.  But oh how gross.  I hope it’s something to do with the broken drain on that side, and not something worse.  Gross, ugh, gross.

The left side, that just had the completion mastectomy, at least is healing beautifully.  The drain holes on that side huuuurt.  But otherwise it’s fine.  I’m worried about what we’re going to do about the right side, even though I know worrying is wasted energy.  It is what it is, and will be, and I’ll survive it.

I’m worried about the scans on Wednesday, and what we’ll learn from that.  I suspect that each scan will be met with some trepidation ahead of time, even when I’m healed and healthy and just doing my two-month maintenance scans.  After all, that’s the first sign that something goes wrong, is if those scans change what they tell us.  I trust my doctor implicitly, I know he already has a plan B, C, and D in place for whatever shows up, but I’m so ready for some time to just follow a plan A for myself for a while: heal myself, take care of my kids and my family, write my stories of fear and joy, finish my collaborative art project with my artist friend who I believe strongly in, travel around and learn more about this crazy and terrible and beautiful world we live in, and test clean and consistent on my 2-month scans repeatedly.  Reconnect with others, make some sort of difference in peoples’ lives for the better, fill myself and the world with joy because we could always use more of that.  Love.  Live.

But first, gotta get past this gross wound-healing stage.  Wish me a speedier and complication-free healing from here on out, as you have the time and energy to do so.  And spare a moment or three to send good vibes to all those affected by the Bastrop fires — or even better than Facebook-style vibes, find out ways you can help them re-build. (Like I said, we’ve got a full shed that Eric or anyone else with a truck can come scavenge to their hearts’ content; it’s not doing us any good with the stuff just sitting out there not being used. Contact us if you want to be one of those people.)

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Sep 16 2011

Another day, another doctor appointment

They really are weekly, during these early days of crisis and post-crisis and establishing baselines and new routines and mapping out how the rest of, well, my life will go, really.  It won’t always be this frequent, but it seems like it right now sometimes.

This week I saw the surgeon who performed my mastectomies, considered by many to be the top surgeon in the hospital, (how cool is that?) which probably explains why he gets to wear cowboy boots to work and play country music during operations, according to the nurses.  That appointment I already talked about in a previous post, so you’re more caught up than I thought, Faithful Reader.  I’m getting back into this blogging thing better than even I knew, heh — I’m repeating myself.  Tuesday was a long day; in addition to the at-home nurse visit provided by Medicaid, I had a several hours-long doctor visit with Dr. Rubin de Celis.  We have more CT scans scheduled for next week; according to him, these will be the truely true baseline scans.  The previous ones were to see where we were at, once all the chemo and radiation had been done, which showed us the four liver spots and the remaining breast tumor.  The breast tumor is gone with the surgery; there were two active lymph nodes out of the five removed on the right side.

According to de Celis, this doesn’t change anything in our plans so far, as they also took the inactive ones surrounding the active nodes to get clean margins.  It does mean that there could be cancer cells flowing somewhere in my body, waiting to attach somewhere and start growing again.  It also, since those active nodes were surrounded by dead cells, could mean that they were remnants of some of the largest liver tumors still in the process of dying off from the aggressive chemotherapy regimen I was on.

So it’ll be two months since the last chemo treatment when we do these scans next week, and that’s long enough to know what lingering effect, if any, the chemo had on those liver spots.  If they’ve stayed the same, or gotten smaller, we’re happy; that’s what we want to have happen.  I’ll get put on tamoxifen, an anti-estrogen medication, next week as well, and that is supposed to do the job of keeping those spots stable or shrink them, like we want to have happen.  I’ll get scans every two months while staying on this drug essentially for life, given the aggressiveness of my cancer.  (We’ll of course be watching the other previously affected body parts to make sure no new cancer springs up in addition to watching those four spots.)  Stay the same or get smaller (or go away), we stay happy. The only long term side effect to worry about with tamoxifen is leg blood clots, so as long as I stay active, get back with PT and exercise as I’m able to do, and keep my body otherwise healthy, I shouldn’t have to worry about clots.  As long as the tamoxifen works and all the radiation and chemo worked as it should’ve, then I stay in a remission-like state and live my life and do ambitious and wonderful things as I plan and live with my family and enjoy my friends for the all the years to come that we all expect to get when we plan out our lives in blissful ignoring of death’s shadow.

We’ll also stay on the Aridia, as I’ve mentioned before, to help repair the osteoporotic-like damage to my bones that happened with the metastatic cancer.  I just got my monthly infusion on Tuesday; the ironic side-effect of Aridia is bone pain, and I suppose it’s a good sign of sorts that my other systemic pain has gone down enough to be able to feel the bone pain specifically this time around.  It is not a fun barrel of monkeys; it is a lot of mostly back pain, mostly where the tumors were, and paranoia-inducing as a result.  I’m also back to sleeping just on my back after having halfway re-trained myself to side-sleep, thanks to the mastectomy surgeries, but of course that will also eventually heal up again.

My dad and step-mom are visiting this weekend.  It’s been wonderful having family visit so regularly and be so supportive.  I wish they lived closer so I could have even more of that.  We’ve also got a really great community here in Austin, it’s been great to see my husband taken care of with near-weekly gaming and dancing with his friends to relieve some of his stress, as he adjusts to a high-stress-level new job doing a bunch of things he’s been wanting to do for years and getting paid (close to) what he’s worth as well to do it.  We don’t get the time together that we’d like, but that like everything else will repair itself over time as things heal on all the different fronts there are to heal.  It makes it challenging to find time for me to get back into my part of nurturing all the different aspects of family care on the home front, and for being a cancer-and-surgery-recovering currently disabled person, I think I’m doing darn well.  Having the live-in help helps, quite a bit.  We’ve had a couple of hiccups with her car having troubles but it sounds like we’ve finally got a handle on fixing that up so it won’t keep being a problem, which is a relief.  I still manage a date night nearly every week with the husband, even if it’s just spending time together watching a movie or series and quietly enjoying each other’s company.  I help The Teen with his homework and help manage the onslaught of his Teen Angst, and can feed and even sleep with Super-Baby with a bit of positioning assistance.

***

I still don’t feel like I have enough time to cry.  To hold my daughter (or my son).  To sleep.  To write.  To spend time with husband or friends.  Time seems to be one of the commodities that slips through the fingers like sand as one convalesces.  I found out that one of my friends lost everything in the Bastrop fires, and yet again I’m invalid enough not to be able to go help out the way I want to (though at least this time I can offer a shed to rummage through for usable stuff, and a bit of kid-care by way of volunteering our helper lady, so better than nothing).  I’m so tired, and there’s so much to do, and I’m doing so much, and the task list just gets longer each day.

I’m supposed to have a scale, which I’ve never owned, to track daily fluid weight, as we wean me off the steroids I’ve been on for the past several months.  I’m supposed to start wearing lymphedema sleeves again.  These are super-expensive, I’ll have to check to see if Medicaid covers those, though I’m sure they’re the ugly beige type if they do.  I’ll put up a wishlist for some more stylish ones sometime soon, in case anyone feels the urge to give a good and useful gift.  (I have several gorgeous gifted head-scarves I enjoy wearing when hubby and I go out or I feel like dressing up.)

It feels like something new wants to be written but nothing has shown up yet.  So I will continue to slowly send out old stories (did I mention I had done that, on a couple?), slowly clear the desk, and perhaps as I do so the new things will begin appearing.  If I am to live this life to the fullest it is meant to be, then there must be more stories, new stories, moving and delightful and entertaining stories from me to you.

And so there shall be.  So send good thoughts and prayers if that’s your thing (I’m a non-denominational well-wisher accepter), encouragement and excitement for more stories, rub my bald head for health if you see me (my son is good at keeping this up), send love…and go out and live your lives fully, fiercely, and beautifully, so that daily we all spit in the face of death.

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