Archive for April, 2011

Apr 30 2011

radioactive weekend links

The world is ending again, on May 21st. This time with billboard announcements!

Why Nerds are Unpopular

Ridiculous fandom expression — royals tattooed on teeth

On Writing the Other, from Lauren Beukes

Tiny spacecraft — why hasn’t this been explored more as a concept? How cool…

I may or may not make it to World Horror Convention here in Austin today, but here’s the link in case you want to check it out!

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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.

7 responses so far

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.

2 responses so far

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!

2 responses so far

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.

3 responses so far

Apr 09 2011

Big News; Bad News; Baby News

This blog will be resuming, probably this week. There’s a lot to write about, most of it scary and not-good, unfortunately. But the good news first:

We have a new daughter! She was born by c-section at 36 weeks, so about a month early (counting months in 4-week intervals). She had no major negative side-effects from the early arrival, and is just about perfect in every way that we need both now and in the weeks and months coming up. There is one superpower evident already, as even people who don’t like babies think she’s sweet and adorable. She is the best-tempered baby I have ever seen (and I’m not just saying that because I birthed her), so far only crying when there is an obvious reason to be upset (dirty diaper, hungry belly, cold). She was born on 3/30/11 and passed her first week of weight loss and back into the gaining zone while still in the hospital, weighing more now than she did at birth (which was 5 lbs 14 ounces). She came out a full-length baby at 19 1/4 inches long, so it’s quite likely she’ll take after my husband’s lean and long side of the family. We’ve been having fun looking at my own baby pictures as there is a strong resemblance between how I looked like then and how she looks now.

We did not stay in the hospital for nearly two weeks because of the pregnancy and childbirth, however. (Bad News Alert) I have cancer again. The breast cancer has metastasized (yes, even though there were no signs of metastasis last year) and is in much more scary parts of the body now. This is also the source of the extreme and excruciating pain that sent me into the hospital two weeks ago. At least we know why the other treatments weren’t working to take away the pain, and we have a plan of action to start working on this new phase.

So stay tuned to this website and blog for more posts detailing what we’ve learned in the last couple of weeks, as well as more details about all parts of the new cancer experience and of course, baby news!

11 responses so far