Archive for the 'irradiant' Category

Nov 09 2011

rough day…

Revised release day for me is tomorrow(Wednesday), I still feel mostly like I’ve been dragged over a gravel road for a few miles, but it’s an improvement on when I came in, so there’s something, anyway.  I rant here a lot about my loss of energy and stamina, but you’ll have to put up with a little more for a little while. At least it’s not all that.

Sat in a chair too long and needed IV morphine to stop the back spasm after getting back into bed, it’s made the rest of the day extra painful. I still did a walk for PT, and ended up needing IV again later on when the back wouldn’t shut up again.

Thought I’d lost this post when I passed out over the keyboard, but thankfully autodraft save saved the draft-day.  Definitely a crankypants day and seems like I have too many of those on this blog lately, but that is the reality of my life: It’s hard, and a lot of it sucks right now, and I’m superlow on the internal cheerleading needed to have it otherwise.   Ra ra, infection and bloodclots took all my physical stamina away.  So now I’m a horse with a handicap weight, starting behind the start line instead of at it like the other little ponies.  Not fun, not fair, not much to do about it other than the same old soldier through and believe that surely, this time, someone else out there is a target for the universe and not me, and it’s my turn finally for some kind of damn break just for a while, to heal up and get a chance to enjoy my daughter before she’s grown (at the rate shes going who knows? already crawling).  I just need the rest, the break, the recharge, the change from having  badness of such large magnitude be what I get.  Quiet time.  Nap time.  Rejuvenation.  Rebirth phase of the Phoenix.  These are what I”m ready for, what I NEED, far past wanting.  So that’s what I want for Christmas. Preferably an early Xmas present. That and probably some lymphedema sleeves, I’ll know more once I get that appointment to get measured. But really, Santa, a break is all I NEED.

Arrrrrgh, just had another horrible back spasm getting back into bed.  And that’s being careful and everything.  Please, please no more, we don’t have the good quick-acting IV stuff at the house.  Let this just be a sign I need to be home and finishing recuperating there.

On the good side of things, I’ve got 8 stories floating out and about, and only 4 more that I can even try to clean up and circulate (one of which will likely never, ever get published even though all my friends like it because it involves violating two sacred taboos, Santa Claus and children), so It’s about time to start trying to turn the creative juices to some actual new work.  I do have one new project that I’ll be setting up on another blog, so for those of you in the know (or those of you who just want to render an opinion), which of these themes do you like better? Dusk to Dawn or Chateau And hopefully I’ll hear from my visual artist soon on last year’s project so we can get that finished and out into the world where it belongs.  Love to you all!

9 responses so far

Oct 06 2011

Bandage-free (for what it’s worth) and general update

I’ve finally been cleared to stop wearing the bandages around my chest, after having to do so every day for five solid weeks (there were a couple of days that we gave me a few hours to “air out” but those don’t really count).  Part of why this was so irritating is that a lot of the skin that the bandages covered has radiation recall, which is a condition or side effect that happens to skin that gets too much radiation (say, from having to get irradiated twice when you’re only supposed to get it once and definitely not while on chemo).  Even though the skin isn’t particularly discolored it feels like it constantly has a small rash or varying degrees of irritation, especially if anything rubs against it.  They hand out handfuls of little sample tubes of Aquaphor, a petroleum-based intense skin therapy ointment at the radiation clinic for just that purpose, but other than keeping a couple to fit in my purse just in case I need it on the go, I’ve long since run through the free stuff.  We’re going through this tub pretty quickly too.

So I should be happier about being bandage-free; after all, it took up a good 30-45 minutes of each day, irritated the heck out of my skin, and was just generally all around a pain (figuratively and literally).  But I hurt just as much if not more without the bandages (to the point of tears getting back into bed several times this week).  There are still pockets of fluid inside me that I can feel move around (and sometimes hear, gross eww yuck).  The doctor attempted to aspirate two different areas this Tuesday visit to get some of the extra fluid out, but apparently while there’s enough to be noticeable, there’s not enough to actually get out with a needle.  This is supposed to be a good thing — it means that my body has a good chance of absorbing it all on its very own, though of course if I notice abnormal swelling call the doc to go in and be aspirated again.  And there’s still a centimeter-sized indentation/hole on my right side that everyone says is closing up quite nicely, but walking around with a hole in one’s skin makes for some paranoia.  At least it’s mostly stopped squeaking this past week.  Now all I have to put up with are the nasty squishy sounds from the internal (but small, really!) fluid pockets.

I’ve got a prescription for lymphedema sleeves and gauntlets; now must find out if Medicaid covers it.  I think I’ll have to make yet another appointment for someone to measure me and tell me what size to get, if I recall last year correctly, though I suppose policy could have changed.  The difference there is that last year, I had the chance to stay on top of things and only come close to actually getting lymphedema.  This year, I got it while on steroid medication and in the hospital, so I never had a chance to do any of the preventative measures I did last year.  It’s one of those things that once you have it, you can control it, but it never quite goes away.  Every time I go on a plane, or exercise, or on flare-up days that you can’t predict the frequency of, I’ll have to wear them.  If I’m lucky, that won’t be every day.  Again, I’ll soon put up a wishlist for those who want to get me a nice birthday or holiday present, since the ones Medicaid is likely to cover are the racistly-named “skin tone” beige color.  Those are fine for around the house I suppose, but I don’t see why something like that has to be ugly to be functional.  There’s a nice company called LympheDivas that has them in bright colors and awesome patterns, and flashy beauty is definitely deserved for going out and about.  Sort of like when I wear brightly colored scarves on my head when out, rather than a neutral-toned hat or beanie — I’m certainly not trying to hide my illness, and if I have to wear them anyway, might as well be fabulous about it.  There’s apparently even a shop in Austin that I will have to get out to and check over once I’m a bit more mobile.

And that’s the most frustrating part.  They were NOT kidding when they said this surgery would take twice as long for me to heal from.  I’m not even back to where I was pre-surgery in my healing from all the other stuff cancer-wise I was healing from before whacking the rest of my boobs off.  Back still hurts, fatigue at near maximum levels (still passing out over the keyboard or while watching shows).  Most days I don’t even feel close to that pre-surgery landmark, much less moving past it to healthier zones.  I am up to doing what I count as PT every day; walking, especially up hall inclines for doctor’s appointments or around the pharmacy or other errand counts.  So does holding the ever-squirming baby or helping to feed her solid food.  Still doing the in-bed exercises for my legs, focusing on those glutes and quads that are weak as jello.  Tried a couple of arm exercises, those don’t go as well and the past couple of days I’ve used my arms WAY too hard — as in I probably shouldn’t be typing and certainly not this much, it’s that bad.  If I’m *lucky*, the next week will get me back to pre-mastectomy health zones, but I can’t count on it.  I just have to keep doing what I’m doing and hope that it will get me there eventually, since they said it would be more like 12 weeks of recovery.  From the surgery.  And then I could start actually moving toward better health states.  I don’t know if this stuff teaches patience or forces it, most days it’s just put one foot in front of the other (metaphorically) to get through and hope that the little bit better is around the next corner.  And the next. And the next…

And next week is another bone treatment infusion, which will set me back a few days with extra bone pain and fatigue and all that not-fun.   I am so very tired of this.  It’s better than dying, for sure.  But so, so, tired.  Life doesn’t stop to wait for me to heal; there’s still kids to take care of, and budgets to help manage, and hopefully a few friends to see, and I have to get help on all of those anyway.  We’ve got someone to help with the kids and house stuff, someone else to help with the budget managing (which we’re going over with the metaphorical fine-toothed comb in October), and I at least still have writer’s group most Sundays, which is work but has a nice social tone to it as well.  Once I left the hospital, the friend visits mostly dried up.  I recognize a lot of that is because the hospital was way more conveniently located than where I live, but I still miss the visits (and the friends, of course).

Speaking of writing, I’ve got an idea to slightly re-write another already-existing story for a market that just sounds cool, even though they only pay semi-pro rates.  At this point I need to be getting my name out there and worry about the pro rates when I can, but not obsess only on those markets.  I think I’ve sent out a story or two since I last reported on such conditions here on the blog.  I’ve written a new piece on the new project I have in mind, and participated again in Leah Petersen’s Five Minute Flash Contest this week (I haven’t been able to for the last several weeks due to doctor visit conflicts).  My two contributions haven’t been all that great, but the effort was made, and at this point getting back in that saddle is the goal, fine-tuning the quality comes next.

There’s probably a lot I’m leaving out, like what about the latest scans?  Well I talked to the nurse about them, but decided not to report until next week when I’ve actually been to the doctor and heard it from him, but sounds like more good news.  I’ve started my anti-estrogen drug tamoxifen, main noticeable side effect so far is the hot flashes are back.  Thankfully my doctor agrees with me that unless scans dictate otherwise, we’re waiting on the ovo-hysterectomy until I’m actually at a point that vaguely resembles “healthy”, so I won’t have to worry about that until sometime next year.  It would be a novel sensation to heal up from a surgery starting from a healthy point instead of at the brink of death’s door; I hope I get to try it.  Even surgical menopause might not be all that bad since chemo and tamoxifen will have put me most of the way there before the organs ever come out.

Oh, and my mom is doing the brave and smart thing and having her own prophylactic double mastectomies next week. (Meaning, she doesn’t have anything showing on scans but she has the same genetic flaw I do and it’s the smart thing to do BEFORE problems show up.)  So take a little of the good energy you’ve been sending me and toss it her way; since she IS getting surgery from the point of healthiness and it sounds like she has good doctors, she should heal quickly and well.  I’ll probably try to have a quasi-interview thing here on the blog with her about it at some point.

Now to quit hurting my arms by typing and watch a show until I pass out.  And take my overdue meds, they don’t help if I don’t take them.

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May 10 2011

whirlwind week, plus actual good news bits

This is a very full week. That also means it’s a difficult week, compounded by the fact that over the weekend my pain levels started climbing rapidly again and my hips are now even more unstable, giving out several times a day when trying to stand up or sit down. It’s also affecting my sleep again, both making me unable to fall asleep at times and awakening me due to pain other times. It isn’t just my hips but my back, and the pain surges are almost like electric rapid throbbing all up and down my core, wrapping around my ribs, even making it a bit difficult to breathe at times. The lump under my right arm also flares up daily, swelling up enough to put pressure on other muscle groups throughout the right shoulder area and being uncomfortably painful. I can’t do the hot tub (dr’s orders) and I do miss it now, though I’d gotten quite sick of it before childbirth since I was using it several times a day for the pain I was in then. I am allowed bed-buddy and heating pad, so am using that on the shoulders and hips/back, and I put an ice pack on the underarm lump which doesn’t do much but is better than nothing.

Yesterday had the consult for the port catheter install, which is scheduled for horribly early tomorrow morning and which will be difficult both energetically and logistically to accomplish. It is surgery with local anesthesia and heavy sedation, and hopefully also accommodations for the fact that I can’t stretch myself straight on a table or bed. (I spoke to the doctor and he said they can prop my legs up no problem, and I’ll remind them of it tomorrow.) As Jay Lake laughingly calls his, afterward I will have my very own Harkonnen heart plug installed. The port catheter is a device installed into a central blood vessel that feeds directly into the superior vena cava. The doctor was really awesome in the consult, giving me the 30 year history of these devices as he was explaining the procedure. I learned that only about 85% of these allow for blood draws from the area, so hopefully I will be in that majority as I am having difficulty lately with successful blood draws (lots of re-sticks and bruising for days). The main reason the port caths are installed is because chemotherapy drugs are very harsh, and if put in a normal IV will eventually result in collapsed and scarred veins that can’t be used. I won’t have anything visible on the surface once it heals, and it is designed to stay in semi-permanently as chemo treatments will last for months.

Today had another follow-up with the medical oncologist to discuss the CT scans from last week as well as the most recent pain changes and upcoming cath install and chemo. We have also started all the medicaid pre-authorizations so that hopefully we can stay on the timetable for the rest of this week’s plans, though of course that might not happen. (Haven’t yet heard nay on the cath procedure, will call a bit later today to make sure but have to assume that at least is staying on the schedule.) The doc is concerned about the new pain increase and the differences in how I am describing the back pain, so he has ordered an MRI (which we’ve scheduled for Thursday, pending Medicaid approval) on my thoracic spine as the CT scans don’t give a clear picture of what is happening in that area. His concern is that the tumor there might have shifted to putting more direct pressure on the spinal cord, which would be fairly bad news if so, and the MRI will be able to determine that more clearly. Hopefully the MRI scan will be able to accommodate the leg problem also; I was so out of it from pain when I had the first one several weeks ago that I can’t remember if they propped my legs or not.

But I promised good news bits, and here they are. The CT scans from after the radiation treatments were compared to the ones taken before. The effects of the radiation will still be happening for several weeks (they’ll be taking another set of CT scans after 2 rounds of chemo for further comparisons) and so the full effects aren’t yet known, but the liver and lung spots and underarm tumors all either stayed the same or grew only slightly (none of those received any radiation so it’s good that they haven’t changed significantly). The spine had some changes (more will be learned after the MRI on that), but the hip/groin tumor shrank to almost nothing. Also he mentioned no sign of a tumor in the left hip, so whatever badness is happening in my hips is at least not more cancer. The hips will remain weak and unstable until the bone has time to repair itself, so I have to be vigilant for weeks more to come, which is rather scary. It’s also likely that my body is still finishing up flushing the relaxin out of my system from pregnancy, which would contribute to the instability of the hip region. I think I’m more scared about the pain increase and the hip issues than I am about the upcoming chemo.

Speaking of, pending authorization, I will be starting chemotherapy on Friday. (I said it was a crazy week!) We are choosing a very aggressive set of chemicals, such that I will apparently only be able to do a maximum six rounds of this combination before we have to switch it up, due to the danger longer-term to my heart with repeated use. It’s normally given every three weeks but we’ll be trying for every two weeks assuming my blood count permits, to try to hit the cancer as hard and fast as possible. He wants CT scans after two rounds, as I mentioned, and depending on what those scans show will determine how many more rounds of chemo we’ll do before scheduling the mastectomies and underarm lump removal. It sounds like I’ll have a fairly normal range of side effects. Nausea and vomiting can happen for 2-5 days of the cycle; mouth sores; fatigue (ongoing); low blood cell count (peaks about a week after infusion); and of course, hair loss (begins about 2-3 weeks after the first dose). Of all of these, I’m of course most upset about the hair loss, as I have not cut my hair (except for trimming) since I was my son’s age. I like having long hair, never wanted to have anything but since I was a little kid, so that’s another of life’s little ironies for you. The doc assures me it grows back, but that doesn’t change much of the initial yuck of having to go through the hair loss. I plan to do crazy henna designs and wild and wacky scarves, so if you know where to get good head scarves let me know!

Increased pain increasing, so this post is plenty long enough for now.

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May 06 2011

in-between

Dealing with Medicaid is a special hell, in terms of getting things scheduled and actually done. Each procedure needs “pre-authorization” that takes anywhere from 1-5 days, so nothing happens on a speedy time frame and there have been several re-schedules due to the authorizations not going through.

Radiation finished up last week, though the effects will be ongoing for a few weeks according to the doctors. Skin irritation on the abdomen, and some variable and lack of sensation in the anal and vaginal areas continue, hopefully as temporary effects. Hips are definitely still quite unstable, and the left hip continues to have very uncomfortable problems that make me think there is something bad happening on that side beyond compensatory imbalance. I definitely want to be wrong on that feeling.

We did another chest/abdomen/pelvis CT scan post radiation today (finally, after 3 reschedules) so that will hopefully tell us more about whether there is anything newly wrong on the left hip, as well as the progress so far from radiation treatment. It was painful and I was unable to straighten my left leg, thankfully we could arrange pillow props under my knee and still do the scan I cried and had to break once to sit up for a bit, but didn’t scream so that is some improvement from when I first began radiation a few weeks ago. Next week we have a consult for installing a port catheter in my chest for chemotherapy (and hopefully also the install itself, assuming we successfully navigate the pre-authorizations). My medical oncologist said that while the port will be sore for a few days, there’s nothing stopping us from beginning chemo right after it is in. So possibly as early as late next week, almost surely by the week after, I’ll be beginning chemotherapy treatments. We will do some number of these, every 2-3 weeks depending on how my blood cell count keeps up and in healthy ranges. Then we’ll schedule a mastectomy, which for me can’t come fast enough at this point because the lump under my arm is getting to be in the way and really painful. I am hoping it responds well to chemo so I can get some relief before surgery, but if it keeps up this bad I will of course be talking to the doctor to see if we have other options sooner like radiation for that spot or something.

I’m actually reading a couple of books, which I haven’t done in quite a long time. It’s good, it’s sparking writerly thoughts, unsurprisingly. My brain seems to be taking on the logistics of figuring out how it wants to be working during all of this madness, which pleases me since it’s a good brain and generally solves those types of problems well. Patience with the progress is a little trickier but I’m managing it admirably given everything else, I’d say.

I keep promising baby posts but reneging; hopefully I’ll quit being that naughty. In the meantime, still perfect baby, still awesomely low maintenance, still gorgeous and developing her superpowers daily. If you’re local, come meet her and join her fan club!

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Apr 28 2011

Not quite glowing yet…

In week 3 of radiation, and am now done with radiating one of the sites (the t12 vertebra received 10 treatments, the hip is receiving 14). It is easier to get through the laying down on the table part but still far more painful than I would like at this stage, given all the other scans and treatments still to come after radiation. However, one reassuring bit of information is that the effects of the radiation treatment can continue for up to 6 weeks after the treatments stop, so I could continue to see improvements in mobility and less pain and more comfort after this week is done. I certainly hope this is the case with me.

Though there has been some marginal improvement in physical pain, psychologically the radiation treatments get no easier. I still want to cry after getting up off the table even if I’m not crying from the pain. It’s still upsetting to think and talk about, and I can’t quite say why. It’s presumably doing good things for me, the radiation itself doesn’t hurt, I’m having only mild symptoms from it, and none of that makes a difference on feeling upset about it. Odd.

Speaking of symptoms (possible TMI for some), there are normally some loose stool problems with this treatment but those seem to be mostly counterbalanced by the narcotics’ tendency to cause constipation, so I’m staying mostly regular there. I’ve had some skin dryness and flakiness on the chest where they radiated the spine tumor in front, and my back feels dry and agitated so I’ve been putting coconut oil on both places. Also on the hip/right butt area, front and back. And internally I feel like the vaginal and anal areas are a bit…abraded feeling from the radiation; not excruciatingly so, but noticeable.

Fatigue has definitely been elevated (hard to tell the difference at times since I was fatigued from massive pain and birth and c-section and everything else, but it’s a different timbre of fatigue, really). The last week has seen an upswing in the number of times I’ll lay down to nap (still getting actual bits of sleep during those times, so that’s good), such that if you add all the sleep chunks together I might actually be getting close to a full night’s equivalent. The baby continues to be perfect about adapting to my sleep schedule (or me to hers, or whatever) so feedings and changings tend to come when I’m about to be waking up anyway due to pain or need to shift positions or to use the bathroom.

My hips are still prone to giving out, especially the cancer-ridden right one, and that’s seen an increase in the last 1.5 days from where I’d had a bit of respite from that symptom for a bit. Always discouraging and frustrating to have that sort of thing come (back) up. I’ve had massive pain in my LEFT hip throughout the last week, which I checked on due to paranoia. It feels similar but not identical to the right hip pain, so my guess is that it’s compensatory tension and stiffness causing the pain and mobility lack. I had them check and they say that while it could be caused by cancer too small to see, there isn’t currently a mass on the left that could be causing that sensation, so that’s another vote for compensatory issues rather than more cancer. However painful it is, I’ll gladly take compensatory whatever over more cancer, bleh.

Related to this is that I can currently break myself, and therefore can’t stretch properly or do yoga or anything to ease the tension and stress accumulating elsewhere in my body from all the cancer and other health stuff going on. Given the speed of shrinkage of tumors from radiation (potentially), the bone doesn’t grow fast enough back to prevent points of weakness at first, so over-exerting those areas could cause damage up to and including self-fractures. Ewww. I’d say a broken spine or pelvis would be one of the worst ways to exacerbate this already crappy situation, so I’m stuck with micro-movements and slow isolations and pillows propping me in aligned positions for sleep. Another recent good piece of information, is that this isn’t likely to be a forever situation. After several weeks of healing post-radiation I’ll be able to start PT again for rebuilding strength in those areas safely.

And now it’s more naptime.

Don’t forget to leave comments if you want to keep hearing about this journey! Knowing you’re out there reading is encouraging, and I think writing about it can benefit more than just me.

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Apr 19 2011

Radiating into week 2…

Radiation treatments are Monday through Friday, going through at least the end of this week and probably next week as well. Monday was difficult, as of course I’m still hurting, but also emotionally difficult to make myself go when the first week had so little tangible progress. Monday’s treatment wasn’t quite as bad physically as those that came before. I still got a pain shot, but didn’t have to interrupt the process and only cried at the end. The emotional load hit and I cried for a bit after it was done before making my way home. My mom, in town Sunday through Tuesday, said I was moving a little better around the house Monday evening and it seemed to be true from my own observations.

I’m also sleeping a lot more, which merits clarification as sleep has been such a huge issue. I am still waaay in the depths of sleep deprivation, since I haven’t gotten more than 3 hours of sleep at one time since nearly 3 months ago. The pain has kept it impossible to stay asleep for longer than that, as well as made what sleep I was getting very poor quality and mostly twilight sleep rather than true REM restful sleep. Since radiation treatment started (and a few times while in the hospital as well), the sleep length hasn’t significantly changed; I still get anywhere from half an hour to 2.5 hours at a time before awakening. However, the quality of those small chunks has definitely started to slowly improve. In the past three days or so, I’ve been trying to lay down for as many 2-hour time chunks as possible, and managing to sleep for some of all or each of those times. So far it seems to have manifested as a little more mobility and ease of being in a sitting position; hopefully there will be an increase in energy soon as well. I’ve been told I have a bit more color in my skin the last day or two which one presumes is a good sign.

Today was a frustrating day for radiation treatment. Tuesday is the day I’m supposed to see the doctor and check in on the process. However, the doctor wasn’t available today so I spoke to the back-up doc. This is always frustrating for me, since my situation is fairly unique and she couldn’t answer any of the questions I had, including new symptoms in sensation of the hip and spine region since radiation started that I’d really like more clarification if possible on. Getting the answer “well it’s probably just the tumor” is massively unhelpful, since the tumor doing stuff on its own AFTER treatment started seems like it would be a huge cause of concern. The tumor reacting to the radiation, or changing size, releasing nerve pressure, SOMEthing that’s actually connected to what we’ve been doing, would be way more nice to hear than “oh six treatments is too soon it’s just the tumor doing stuff” — especially when someone else has said that there might be tangible changes by the end of the first week or so.

I’m also losing weight too fast again; 10 pounds in two weeks. And I’m eating multiple meals a day. I should probably go back to more protein shakes like I was doing right before birth. One of many steps that I need extra assistance to achieve and therefore doesn’t always get prioritized since there’s so much else to get done.

So I also didn’t get an answer to the question of whether they’ve been taking more films to monitor progress of the treatment. Normally they take one a week, but I pointed out at the beginning that my insides were changing rapidly since I’d just given birth and would more frequent checks on positioning be a good idea? The doctor agreed that checking every other day would be wise and made that recommendation, but I haven’t been able to determine from the sessions themselves whether they’ve actually been following that recommendation, and substitute doctor didn’t seem to understand my question there either.

Tuesday’s treatment itself was a marginal improvement over Monday’s. I still needed the shot but only cried from pain of holding still at the very end…it’s possible I won’t need the shot by the end of this week if things continue to improve. However, there were a few tears of frustration in trying to communicate with the back-up doctor, so hopefully I can arrange to meet with my regular radiation oncologist before tomorrow’s treatment and get my questions answered more directly.

I wish I could talk more about the emotional impact of all of this. It’s messy and mixed up and it feels like there’s no one around who’s really a safe target for listening. People I care deeply about feel more and more distant each day, and it’s not just *my* difficulty in talking that contributes to that feeling. It’s like watching sand fall through a funnel, trying to hold onto grains of connection and intimacy and expressions of caring as everything falls further into constraints of daily routines. Sure stuff is getting done, life goes on; but it feels a lot the last couple of weeks like I’m a ghost moving through my own home, stepping lightly through lives so that I don’t cause unwanted mess, attempting to avoid or hide the unpleasant emotional moments or shared connections so as to not cause more problems for those around me and therefore missing out on any closeness, as others follow their own patterns of avoidance and routine. This isn’t a plea for reassurances that “oh noes, that isn’t so atall”, so don’t fall over yourselves leaving those types of comments. It’s a nearly impossible situation to articulate clearly or understandably inside my own head with a lot of thought put into it, much less externally in this more limited discussion medium. But emotional glunk is part of the cancer process, so I’ll do my best to write bits about that as it floats to the surface along with the other things happening.

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Apr 18 2011

More week 1 radiation tales

Now remember, for you non-special-snowflake medical types, radiation therapy doesn’t actually hurt you. You don’t really feel any of the direct affects. Common side effects include fatigue, low blood cell count (so don’t hang around sick people), and a red discolored area or rash around the area receiving treatment.

However, when a tumor is near nerves or other sensitive areas, the pain issue is a different matter entirely. The tumor in my T12 spinal vertebra has been causing the referent pain down the right side of my back and spine, and the one in my hip/groin area is wrapped around the sciatic nerve and causing referent pain (shooting, stabbing, really agonizing referent pain) down the entire leg. These pains were what I was dealing with through the last half of the pregnancy, though at the time they were ascribed to other causes. And yes, it’s possible that someone should have thought sooner “Hey, previous cancer patient with pain in explicable areas but that inexplicably won’t go away with any of our treatments, maybe we should investigate the cancer angle more closely?” But just like before, the cancer was hiding within symptoms that had explanations in other body changes, such as the fact that many women get hip pain during pregnancy, though obviously not as badly as I did. And while the doctors I’m dealing with now are much better than before, I suspect that my explanation of “excruciating pain levels” were at first met with the more typically dismissive attitude found often in women’s health issues. I’m guessing that the OB didn’t clue into the idea that as a previous cancer patient with a quite painful cancer, I had a different perspective on the pain scale than someone for whom a c-section is the most intense medical procedure they’ll encounter in this life.

So, my radiation therapy hurts. Not due to the radiation itself, but the need to lie prone (or nearly so) on the hard table, and hold still while the treatment happens. Even though it is fast (only a few minutes’ duration), I needed to have a painkiller shot for the entire first week of radiation treatments. Even with all this, I still had to miss Wednesday’s session; the residual pain was still so bad from the previous two days that I could not make myself go again without a break. I of course called ahead and checked to make sure I wouldn’t be sabotaging my health by that choice, since I probably could have forced myself if it was a life/death decision. However, the doctor was reassuring and said as long as I didn’t make it a habit, missing one session early on to recover a bit wasn’t going to harm my chances of getting better overall.

I was only able to get through 2 of my 4 week-1 sessions without pausing halfway through due to the pain. This involved social uncomfortableness as I would start crying, then louder, then couldn’t stop and couldn’t hold still because the pain waves would escalate harder and faster. The staff at the RadOnc center have been simply amazing, never making me feel bad for causing what were obvious delays and complications at the end of their work-day, and chastising me for apologizing when I would break down emotionally. They continually reassure that they are here for me and whatever I need to get through the treatment is what they are there to help provide. It doesn’t stop me from feeling weak or helpless, but makes such things a heckuva lot easier to get through.

By Friday I still hadn’t noticed any real improvement in my ability to get through the radiation sessions, with Friday’s session needing two shots to finish rather than the one I’d been getting. Later that evening I figured out that Friday’s difficulties were mostly due to a miscalculation in my pain management regimen. They had changed the dosage on the pain patch I wear for continual relief (the oral meds are for the as-needed part and unfortunately are still needed quite a bit) and I had remembered the wrong day for changing out the larger patch. By the time I’d checked back through my daily medication notes and found the problem, I was well into a pain crash and the rest of my Friday was mostly lost to recovering from that. I felt angry, and stupid, at making such a mistake especially when I’m taking notes and keeping track and not-hurting is so important a goal. My step-mom did a good job trying to reassure me that those mistakes happen, even with notes; that she’s made similar mistakes; and so on. It was good to have her and my Dad down for a visit over the weekend, and friends have been doing a similarly awesome job of coming out and keeping company.

The weekend was quiet, and low energy; my Saturday was reasonably functional given current abilities, but my Sunday I was totally out of it for most of the day, only getting more coherent in the early evening. I expect my times of “getting things done” will shift (and continue shifting as factors change across treatment) and I’ll probably have some internal psychological adjustments to make accordingly. I’ve been used to either having the energy to do things, or not having it and having to push through and get stuff done anyway, and so having set times of day where things can more easily happen than not and vice versa I suspect will be a bigger change than it first appears.

Much more rambly entry but that’s what you get for today. I’ll try to remember to post happy healthy baby things scattered about as well as the more serious stuff. And questions, definitely ask them! Feedback, questions, things you’d like to know, something I mention that you want more details of…any of that is good, and will help me keep blogging, and writing, and processing, and healing. I’m also planning a “how you can help” post to go up within the next few days, so keep reading!

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Apr 16 2011

Week One of Radiation, part 1

Well I made it (mostly) through the first week of radiation treatments.

The first visit is a consultation, which sounds nice and neutral but really isn’t, if you’re a radiation therapy patient in lots of pain. Scans and markings have to be taken in order to make sure your radiation is targeted correctly. These scans involve lying quite still on a hard metal table while they make little adjustments repeatedly. And did I mention the table motion is rather abrupt, more prone to jerk-stops than a smooth ride?

These facets and others were why I spent so much time in the hospital on the first treatment step, getting a manageable pain regimen for me in place. Since I can’t go around hooked up to an IV for the fastest-acting drugs longer-term, we had to find a combination of medications that would get me functional enough to begin radiation treatment (as well as allow me to go home). This took several days and a few ups and downs but we managed to find at least the start of what combo could work, with further alterations made outside of the hospital. During this time of course our new daughter was passing her daily scans with flying colors, having come through a potentially traumatic time for a premature fetus with no significant negative side effects. (More on her stuff in a different post later.)

I was discharged on a Thursday, and the original plan was to have the radiation consultation on Friday. My exercise up to this point had been short walks in the halls and moving around my room. I guessed that trying to get discharged from the hospital, manage the car ride home, another car ride to the oncology center, and whatever stuff needed to happen at the appointment was a bit much to do for one day. However, the Radiation Oncologist (RadOnc) with whom I am working wasn’t going to be available on Friday, and I decided to go ahead and do the consult on Thursday and take Friday as a rest day. (The other option being consult on Monday and begin treatment Tuesday, and I didn’t want to delay if it could be helped.)

That was a rough, rough decision. Thankfully we were there near the end of the work day, so I don’t think I scared off too many patients. It took a while to get through the scans as I was already in tears from pain when we arrived (see previously mentioned discharge, car travel, etc for reasons why). Everyone was very nice, in keeping with the amazing doctor trend we’ve encountered this time around, and quite patient with the slow pace. I started crying quite loudly when they laid me down on the CT scan table. They were able to give me a small bolster for under my knees, but due to the location of the hip tumor could not give me any more comfortable a position than that. The stretched-out position also pulled on the c-section area causing me to notice pain in that area for nearly the first time since surgery (otherwise that area’s discomfort was and is drowned out by the neural noise due to the tumors’ effects). I had to get up off the table and wait for them to give me an extra shot for pain relief before we were finally able to finish.

Radiation preparation involves creating space-age molds around your upper and lower body that they place on the table to hold you in the same position each time for treatment. They also mark on your body with permanent marker and little tegaderm-like waterproof stickers so that they can more quickly orient the machine each day to target the correct areas for treatment. Note: your own sweat will take off the marks even if you are very careful about not scrubbing them while showering and so on. For someone who had just given birth and is having hot flashes as hormones readjust, sweat was inevitable. I spent the weekend re-marking two of the lines they hadn’t put stickers on until we were able to fix them on Monday.

I finally made it through the prep and scans in a pain and tear-filled haze, then spent the rest of Thursday and most of Friday doing not much at all but attempting to recover from Thursday’s extra activity load. And since typing for too long causes its own discomfort these days, you’ll have to get the rest of week 1’s radiation story later; now it’s time for a rest and a snack.

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