Wednesday, October 07, 2015

all clear & paradoxically feeling worse

My two CT scans (chest, and head & neck) were unremarkable.  That is to say, the same exact anomalies seen last year are still present in the same places but they are exactly the same size so there's nothing to worry about, cancer-wise.  At least until my thyroglobulin numbers come back in from California, which won't be until the end of the month.  Anyway, I have a clean bill of health and the doctor reminded me to take the endomethacin he prescribed for the inflammation I have in my collar bone joints.  I can't remember whether I took it before and if I did, what happened, but I'll give it a shot.  Inflammation of a basically immobile joint is not the type of thing that responds well to physical therapy.

Now that's over with, and on the eve of heading back East for Mom's funeral services, I'm feeling entirely overwhelmed.  I've been pushing everything off for days and now I don't have anything more pressing to think about.

In other news, I was hit in the eye by a water-filled balloon (not a "regular" water balloon of the type that breaks if you look at it wrong) last Wednesday, and my eye has been killing me ever since.  I went to the eye doctor yesterday and she basically said that the generic eye drops I was using were useless and gave me some Systane, which is helping a lot, but she said it's going to be sore for a while even though there is no sign of anything seriously wrong.  It's just traumatized.

I felt pretty good about being caught up on my schoolwork, but then realized I'd skipped a chapter and a written assignment for tonight's class, but that's probably OK because I did present my literature review work-in-progress which everyone was impressed with.  Eh.  If I weren't going through so much right now I'd have more done and feel better about it, but I can't change the way things are.  I'm just so swamped now -- lots of reading for next week, plus I still have to read my students' research paragraphs... and there's no time.

Monday, October 05, 2015

two down, one to go

My whole body scan was negative.  Completely clear, which was very nice after last year's "blip" and the continuous annoying pain I'm having in my collar bone (and now, up under my right ear).  Apparently, whatever is going on, it's not thyroid-cancer-y enough to show up on the WBS even after nearly three weeks of the low iodine diet.

Last week was so horrible I'm amazed I survived it.  Mom's death was the worst of it, but I had commitments, both personal and professional, that I had to keep.  Driving up to the hospital in Phoenix 4 out of 5 days was just exhausting, especially as most of the trips were in the after school, and therefore rush hour, time frame. But Thursday, my day off from the hospital, was parent-teacher conferences, from 8AM to 6PM and I barely had time to breathe.  We had an hour for lunch from noon to one, and really needed it.  The one good thing I can say is, the day flew by, and no one came in with a grievance.  I managed.

Yesterday I caught up on grading and lesson planning while doing my colonoscopy prep.  Ten years has done a lot of good in the colonoscopy world, as the prep last time literally made me sick and I was completely miserable.  This year's prep was much more manageable, and although I did have to use the bathroom sometimes every 10 minutes, I didn't have the horrible abdominal pains I had last time.   This morning my procedure was scheduled for 6:30am and DH was driving me home by 7:15.  Everything in there is completely healthy, no issues at all.  Once home,  I slept until 11, and then spent some time cleaning and a whole huge chunk of time pulling photos for a memory board for my mother's services on Saturday.

So now that's done, I have tomorrow clear to catch up on my grad school work.  I have several articles to read and I have to start mapping my literature review.  I have already done preliminary research and have a ton of articles to go through.  It would be better to take my time going through it, but I'm scheduled to present my work-in-progress on Wednesday, and I don't want to put it off.

And I can't actually plan on doing any productive work on Wednesday, since I'll be up at Banner M. D. Anderson for bloodwork, CT scans, and then an appointment with my head and neck cancer guy there to see what he thinks is going on.  Maybe this thing in my collarbone/shoulder is just scar tissue, and maybe the problem in my right neck is just muscle spasms or a reactive node... see, I can come up with plausible explanations for just about anything.  Still, I'd like that pain to stop.  I'm really, really hoping it's not a recurrence that needs action, and I'm vaguely, minimally encouraged by the negative WBS.  WBS are not the best for picking up residual cancer in lymph nodes, as my surgeon at MDA in Houston demonstrated.  Well.  By this time on Wednesday, I'll know.

Wednesday, September 30, 2015

mixed up day

Waking up at 3AM and not being able to get back to sleep put a haze of exhaustion over the morning.  I puttered around in the kitchen packing up pumpkin gingerbread (I used quinoa and tapioca flours, plus almond meal - a cup of each, and subbed honey for half of the molasses. Why do I always run out of molasses?!) and  I made a simple glaze using the coconut milk/coconut cream mixture I've been using in my coffee, and it was delicious.

But by then I really needed to hustle so I wouldn't be late for work.  I actually stood still for about a minute deciding whether or not to shower, and finally went with "yes".  I had the time, although it was really annoying because I was itchy for about a half an hour afterwards.  I've laid off my supplements during the LID but now I'm seeing that they actually do help me with all my weird and awkward physical conditions, like being itchy when I get out of the shower.

I had a district meeting scheduled for all morning to discuss this year's science fair, and I was late to that because I was talking to one of my sisters.  The district lead found me on the phone and I told her I had to take the call, and why, and she was completely understanding about it.  Everyone was very kind when I showed up 20 minutes late.  I really appreciated that.

After the meeting I was so exhausted I went straight to my admin and asked to go home so I could sleep, and mercifully, I did -- I slept through the two alarms I'd set to go off at 2, and woke up at 2:25.  I would've slept all afternoon if not for my second Thyrogen shot.  I managed to get to the hospital at 3:15, so not too late, and the nurse who gave me my injection was super about the whole thing.  He had lost his Mom to lung cancer back in January, so he had been through the hospice route also.  One of the most awesome things he said was, "Not to make this about me..." He really did know exactly what it's like: the sadness mixed with relief.

And also craziness.  There was some inter-sibling disagreement over the best time for Mom's funeral to be held, but it was scheduled for October 10, so we'll be heading back there.  I've emailed everyone but there are still a few calls I should make.  Maybe tomorrow I'll have the energy.

I spent the afternoon watching mindless fluff on the television and doing some desultory web surfing, but finally got inspired to do my APA assignment homework about 10PM.  Ridiculous, but it's done which is something because I didn't want to do anything.

Now it's off to bed where I expect I will sleep like a rock, again.   Tomorrow is not an instructional day, thank God, but I'm not up much for playing with the students, either.  We'll see how it goes.   I get my tiny dose of radioactive iodine tomorrow, in preparation for my scan Friday.  I wish there was an easier way to do this.  Stretching it out over five days and having to drive all the way into Phoenix every day is killer - I've put more than 200 miles on the car in just two days!  I'd like to scoff, but I can't -- this is what must be done.

I do have a sense that I'm hurtling faster towards some horrible news regarding my cancer. I spoke very briefly to my Mom yesterday, my sister held the phone to her hear so she could hear me.  I'll see you soon is the thought that popped into my head, then, and it's still there. Of course I'm sad and exhausted, so that could explain it, or maybe it's just wishful thinking, or maybe it's just an odd thought.  I do not think the dead share our perception of time, anyway.  Who's to say what "soon" really means?

Tuesday, September 29, 2015

3AM phone calls are never good

The thing is, I was awake anyway, so I picked up the phone on the first ring.

It was my older sister.  Mom died peacefully just after 6AM Eastern time.  She slipped away when all four of my siblings had dropped off to sleep after being up with her all night.  It is just like her to do that.

I've been processing this information for two hours now.  I feel oddly detached, but I actually think that's pretty common, so not odd.  Of course it could just be the Thyrogen shot that's making me feel weird.

I know I'm sad, but I don't feel like crying.  I'm sure I will eventually, but crying is a tremendously difficult physical process for me, like hiccups (which are also very painful for me) but a hundred times worse.  Crying never makes me feel better, so I don't.  I mean, my eyes leak from time to time when I get choked up about something (I'm quite sentimental sometimes), but the sobbing, chest-heaving kind of crying is really quite horrible for me.

What I'm expecting is, I'll be fine until some random thing pushes me over an edge and then I'll lose it for a bit.  There's a 100% chance that someone's expression of sympathy will be that random thing.

It is not a bad thing to say that Mom's death comes as a relief.  She was suffering so much, and to lose her sight at the end was probably not the worst thing she had to endure physically but mentally was such a blow.  Now she is at peace, with Dad and all her family that have gone before her.

And it's not just a relief for her, but for all of us, too.  That sounds bad!  It shouldn't.  These weeks have been very hard on my brothers and sisters, watching her deteriorate and trying to keep her comfortable.  I feel I can never thank them enough for the time and care they gave to Mom over this time.   We have all be drawn closer together through these events.

I hope we can stay that way. Trying to imagine our family without Mom is impossible.  We'll see how it goes.

Sunday, September 27, 2015

kidney failure is not an easy death

When my mother first went into hospice (July, about 10 weeks ago), I did a lot of research about what to expect. More than one website said that it was an "easy" death, with gradual organ failure leading to a peaceful death.

It didn't sound lovely, but it sounded tolerable.  Like, that wouldn't be too hard to bear.  And that's how it was, for a while.

Yesterday, Mom asked my brother, "What's wrong with your face?"  It was a complete sentence, an entire thought, a rare thing these days.  He told her, I was just crying.  But today she told my sister she couldn't see, and my sister says her eyes are filming over.   She says my father said exactly the same thing to her, What's wrong with your face? when he was dying.

She won't take food or water or medicine, now.  They're giving her liquid morphine drops from time to time, and she sleeps.  She cried out, "Help! Help!"  just twice, today.  Usually it's a lot more.  Just a couple of weeks ago, she could still have a conversation, but sometimes she prayed in Polish, and she called out for her sister May, who has been gone more than 40 years.

The mental breakdown is sad, and it's especially sad that her sight has failed, since it was the one thing she had left.  She loved looking out the window at the woods in her backyard, so I sent bird feeders to attach to her windows, to bring the birds closer to her.  But now she can't even see them anymore.

The lie, though, was about the physical breakdown, and maybe it's just because my mother has so many degenerative conditions that it has not been a gentle descent.  Horrible, painful things: wounds that won't heal; bowels that impact; scratching and scratching at itches that won't stop; wanting to get up and move, but not being able to sit up, much less get out of bed.

We are all grateful she can sleep, in the hope that she is not in pain.

Saturday, September 26, 2015

unraveling around the edges

By the end of this week, I could feel myself coming apart.  My two classes after lunch are always more boisterous than the morning classes. but this week, they just seemed crazy, and I had to really struggle with myself to take the effort to bring them under control.

My biggest issue is one class where I have two very disruptive students, who insist on doing nothing, or bothering other students, or often, both.  I'm still looking for a sweet spot, the perfect technique of redirecting them that actually gets them back on task without the entire class screeching to halt while I do it. My redirects fall on death ears, anyway.  Very frustruating.

I started this post some time last weekend, but it still more or less applies.  I'm heading into my last week of LID, and physically I just feel off.  I've been staying up late so I can stay more or less caught up with grading and grad school homework, so I'm constantly exhausted.

I have two more days of school before fall break, but I won't actually be around for a good part of it, because I have to leave early on Monday and Tuesday to go up to Phoenix for my Thyrogen shots.  Tuesday morning I'll be in a meeting to plan this year's science fair, which is of course the topic I've been more or less obsessed with, since I'm doing my non-thesis project on implementing it as a portfolio.  (It's going OK for most students, but I'm still not reaching everyone.)

Mom's decline continues.  She rarely speaks in sentences anymore, and her mobility is severely limited.  She can't hold a cup anymore, or feed herself.  Writing this out I can feel a weight on my heart.  She is suffering, and I pray for peace for her, and for all of us. The time is getting shorter, now.

I ping-pong between thinking of Mom and my own health issues.   I would love my scan to be clean but I'll be shocked if it is, since the pain in my collar bone is nearly constant, and I have a new hard node just under my jawbone that's causing that new odd pain.  Pain is an unreliable indicator, but it is a worry.

At least I'm eating well.  Since I have to eat what I cook, I'm cooking a lot. I do consider making guacamole to be cooking, especially as I've modified the Chipotle recipe and I'm practically living off it.

I-have-all-this-stuff-in-the-house Guacamole
(Chipotle's recipe with substitutions for the onion, jalepeno, and cilantro)
2 ripe avocados
1/4 tsp + kosher salt
juice of 1 lime
1 shallot, diced fine
cayenne pepper to taste
~1 tablespoon parsley (rehydrated dried)

It's the lime, I think, that makes it so divine.

(But I've also made carnitas, and roasted onions, and a beautiful chicken cacciatore, and chili, and awesome chicken breasts with lemon, garlic, and rosemary, and ratatouille.  We seem to be eating a lot of chicken, but no one's complaining.  I even managed to make quite excellent gravy twice, once for chicken, and once for turkey -- roasting over aromatics makes all the difference.)

Thursday, September 10, 2015

not sleeping

I fell asleep on the couch at some point... maybe 10-ish? And woke up at 2, and I'm still up.  I tried to get back to sleep, but I just don't feel good.  My stomach is roiling (although better now that I had a couple of ginger mints) and my eyes feel cruddy and my brain is going a hundred miles an hour.  I could really use some sleep but I think I'm getting to the point (...depression...) where I'm just not doing the right thing.

Example: I had a perfectly good dinner of leftover steak and ratatouille and then some cornbread.  I really wasn't hungry at all, but I finished off a bag of potato chips. That sounds horrible but is not as bad as it was yesterday, if only because there were far fewer chips left in the bag today.  Then I had some of DD's cheese puffs, just because they were sitting there.   Another example: I had my 2 glasses of wine, but then had an elderflower spritz, just because. (I'm beginning to suspect that elderflower liqueur does not agree with me, but it is delicious.  I feel like I'm hungover but I don't think I had enough alcohol to cause that!)

It's funny how I mix up emotional feelings and physical feelings sometimes.  Like when I've had a physical lump in my throat it felt exactly like wanting to cry.  But now I have this feeling like something is squeezing my heart, but it's not a physical feeling at all, it's just how I experience sadness.  I swing back and forth between thinking it's good I have so much to do, it keeps me busy, and thinking I'm crazy for trying to do all this - master's class, master's project, teaching almost 200 students - at the same time that I have so much going on in my personal life.  DS1 is in college, and DD and DS2 are at a very challenging high school and are pursuing piano at advanced levels.  DH wrenched his back a few weeks ago and is still not back to 100%.  The pain by my collarbone almost never goes away now -- but doing my neck physical therapy exercises 4x/day finally seems to be giving me some relief from the neck muscle issues.

And overshadowing all that, of course, is Mom in hospice, and my brothers and sisters caring for her, while I am here, useless to them.

Now I'm mad at myself (again) because I've been up for 3 hours and have nothing to show for it. At least my next two days at school are light on instruction, so I should be able to manage on the little sleep I did get.