Sleeeeeeeepppppyyyyyyy

Yup, I'm tired. Very, very, VERY tired. The last few days have caught up with me in some big ways.

I woke up with a massive sinus-migraine fun thing. Oh, wait--a barfing sinus-migraine fun thing. There is a signnificant difference! So, I've spent the major part of today on the couch in the semi-darkeness with a compress over my eyes. The migraine is still hanging on to a degree. I can tell from my head, of course, but also from the number of misspellings I've made on here

So, all I've done today is lay rather still on the couch. And sleep. Lots of sleep. I think it's time for more now.

A funeral, family & friends

Well, it was a sad day for those of us among Aimee's extended family and friends, but in a strange way, also a warm and enjoyable one just for being together.

The service was simple, and very different than any other I'd ever seen. Instead of a service held by a priest, pastor, or reverend, the people that did all of the speaking required for the service were the VFW volunteer group who came, in uniform, to give the service, place symbolic offerings for Dad, play "Taps," and give a 3-volley gun salute. An honor guard folded and presented a flag to Aimee's family, which was accepted by her brother, who is an active-duty major in the Army.

After the services were over, everyone went back to Aimee's aunt's house for a small reception. I raced around a tiny bit at the start, getting all my food done and put out and trying to help as much as I could. After things were all taken care of though, we were actually able to hang out and chat with people, and it was a very pleasant afternoon. I got to talk to an old friend, Jamie, I hadn't seen in YEARS!

I think most of all, it felt good for me to be there to offer support to Aimee and help with things. I made the food, of course; I brought Emily a little stuffed "Lambie," as he was immediately named to keep her company at the funeral; I had a basket full of little pocket packs of Kleenex to hand out; I fed people, and I was able to hover around Aimee and give her hugs and just BE there for her and her family.

People have been doing so much for me for so long now, I think I needed to be able to pay back somehow. I think that actually makes sense, when you think about it.

So, it was a long and sad and busy and exhausting day. That's about it. Now my plan is not to move at all until Saturday. Well, and then I'll go back to laying around on Sunday. We have dinner plans to celebrate Conner's 15th birthday at Buca di Beppo, which he wil LOVE--garlic bread and ravioli galore. I can just crawl to the car and crawl to the dinner table and I will have hosted a wonderous dinner.

Meanwhile, I am literally falling asleep on the computer again, and it's well before 9 pm! Time for beddy-bye!

It's raining, it's pouring.......it's flooded!

Well, I get a break in the storms to drive to Andy's today, it looks like. That is an unexpected and bright (literally!) spot in the week, but there is a downside... instead of taking my usual route, 45 minutes of back-road down Colusa Highway, which is nothing like a highway at all--it's barely a 2 lane road in a couple places, winding through rice fields and wildlife preserves and such--I have to go about 20 minutes out of my way through Yuba City, the long, icky, not-pretty way. Colusa Highway, along with lots and lots of other streets and such up here is flooded!

It's not river flooding--if it was, we'd have to be worried here about getting flooded, and luckily, we're not in any sort of flood zone at all. We made sure of that when we bought the house! Now, we are in what's called an "innundation zone," which means that if the dam on Lake Oroville bursts, we're all screwed. Us, and a whole lot of other folks.... Luckily, the dam failing is rather unlikely....but I digress. The flooding we're having now is a result of those pretty rice fields where all the pretty birdies are and their associated irrigation canals and channels not being able to handle the amount of rainfall that hit 'em all at once. Driving Colusa Highway is not something I'd want to do in the dark if I didn't know the road, and you have to be really careful at all times, because there are irrigation channels and creeks and ditches on both sides of the road most of the way, with zero shoulder. A couple inches to the right, and even with a 4WD, you're stuck, and wet. So, you can just imagine what it's like now.

Well, it's a lot like this--->

That's Butte Creek flooding Aguas Frias Road, which is only a little bit north of Colusa Highway, which also crosses Butte Creek. Pictures like this always astound me, because they mean that some moron has actually thought they could drive through that water in some little bitty car. And of course, the news yesterday was full of several more morons in the same predicament. I mean, unless they were planning to open the door and paddle, what the hell were they thinking?

So, anyway, it's off to Andy's I go today, to get paperwork signed so that I can hopefully continue to be on the prescription assistance plan for Lyrica for the next year. Cross your fingers on that. It's a bloody wonder drug, but it's bloody expensive.

After that, home to do a little more baking for the funeral reception tomorrow and then I'm done and ready for that.

The bad news is that I haven't gotten nearly enough rest the last few days... I had to bake a birthday cake and make a birthday dinner for a big boy yesterday in honor of his 15th birthday,

and am just feeling kind of toasted. I'll survive though. After tomorrow, I don't have to do anything at all for many days. That is a very good thing, because I am just feeling the pain and overall "sick" feeling post-radiation and chemo.

AND the evil diarrhea came back. I think I have it under control, but I am still not happy!!

Ah well.....I guess I'd better go get ready to go visit Andy. It wouldn't hurt to leave a bit early, just in case it takes me longer with the stoplights than I planned for. Going the back way, Colusa Highway, there are 0 stoplights, which is pretty cool. If I felt better, I'd be tempted to drive out Colusa Highway just for fun to take some pictures of the flooded parts...

So, that's all from here. Nothing too unusual to report, just plugging away, and hoping that sometime soon I don't wince in pain every time anything touches me between my bellybutton and crotch.

More later...

Doing things, but not too many!

Honest, I am not overdoing it. I did offer to go to Aimee's this weekend and help her clean or do whatever she needed done, and she told me I wasn't allowed--I have to be functional enough to take care of her on Wednesday. That's fair, I can live with that.

And, I am no longer doing ALL the food for the reception. Greg's mother in law (Greg is Aim's brother) has graciously offered to come and cook the day of the services, which will be wonderful. I've had her cooking before, so we're all in for a treat! That means that I've only got a bit more to do, in little spurts, with lots of resting in between. I can fuss with my little bits of puff pastry and not stress at all.

See, it all works out in the end. I haven't taxed myself too much, and I'm still able to do what I can for Aim. Tif (Greg's wife) arrives here late tonight, so I'll talk to her tomorrow and we'll coordinate the final details on the food and all the food-related "stuff" like trays, serving pieces, coffee makers and such then. I think between the three of us, it'll be a breeze now. People always rally around when it's needed, you know?

So, no one needs to worry that I'm gonna knock myself out, honest. Yesterday, I got up way too early for some reason, and knocked out a big batch of cookies, cut and packed the brownies, and baked all the cheddar crackers. Then we went to Yuba City and I got my nails done (for the first time in months YAY, because chemo makes nails not adhere) while Lloyd went on a few errands; then we did a quick run through Walmart, and I was done for. Zonked, toast, done. I even fell asleep before Monk was over, and I didn't really watch any of it. Today, just some very easy things like toasting little crostini and caramelizing some onions. I love making little finger-food appetizers. If I had a catering business, that's what I'd specialize in.

Off to do some kitchen tidying...that'll be my real effort for the day. Lloyd shouldn't have to clean up after all of my creativity!

Things to do...

Well, an otherwise very uneventful week has been transformed, sadly, into an eventful week. Aimee lost her father very early yesterday morning, very unexpectedly. They weren't close, but it is still quite a shock for her and her brother, who was on deployment in Iraq and is on his way here as we speak. With the loss of a family member of course comes a lot of turmoil in the form of the things to be handled, and with Greg's time in the States so limited, things have to happen a whole lot faster than in most cases.

Aim, like most of us, has no experience planning a funeral, so of course all her friends and family are trying to step up and make sure that she knows she is by no means alone in taking all of this on. Her mom, aunt and uncle were able to go with her to the funeral home yesterday and handle all of the arrangments there right away, yesterday. I was very glad to hear they were able to help with that, because Lloyd and I were ready to take her if no one else could. I have no experience with this stuff either, but he has some, and he has a great built in bullshit detector that works well in those kind of situations! But that part is handled, and the service will be Wednesday afternoon.

Dawn is coming up for the weekend for moral support, and I think I may invite myself over for a while too, to hang out, and to help get the house in order a little bit for all her guests. NO, I will not over-do it, Mom, I promise--and you know this is something I need to do, so shush.

But, I am offering to do the thing that I do best, and handle the entire reception portion of things. It won't be a big group, or a long gathering, and I'm perfectly capable of whipping out some little finger-foods, cookies and such, the obligatory veggie & cheese tray, coffee service, that kind of thing. That is something I'm very capable of doing, especially since I have all the serving pieces needed already, and can do things in bits and pieces up until Wednesday. Anna will help me with some things, and Lloyd will help me with others, and it will work out just fine.

Do I feel 100% wonderful right now? No. But am I up to this? Yes. It's only a little bit of time and effort each day and I can handle that for a few days, and then I can lay down for a week if I need to. It's something I can do for Aimee, so that she has one less thing to be concerned about. I will show up at her house early on Weds and put things together before the service, and it will magically get done. She was there for my for 6 weeks of chemo, so this is the least I can do. My experience doing my mother-in-law's service gave me all the practice I need. :-(

And somewhere in there, I have to bake a birthday cake! Conner is going to be 15 on Monday. Lord, can you believe he's that old?!! I remember being 15...and it doesn't seem all that awful-long ago! It will be a very baking-oriented week...

Other than that, there hasn't been much going on. I've been mainly resting, taking lots of naps and being very tired. I did get one big burst of frustrated energy the other day and pack up most of the Christmas crap that was still lurking in piles around the house. Mentally, I feel SO much better now! I still have to sort and pack all the ornaments, but the hard part is over, thank god. I'm suffering for that physically, of course, but it was worth it. Like I said, lots of naps this week.

With all of that said, I think I'm going to go try and crank out some cookies right now. I made the dough last night, so I just have to do some mass baking. Little bits in spurts...that works out.

Here comes the rain again...

Yay for rain! When I woke up this morning, things were kind of clear, like we were in between storms or something and now it's coming down with a vengeance. The wind's picking up and everything. Rumor has it (since that's about all the weather reports up here are good for) that today is supposed to be it for the storms for several days, but that new ones will move in over the weekend. Of course, they'll change those predictions 4 or 5 times before the weekend comes.... Now, the truly amazing thing is that thus far, we haven't lost power. Right on Gridley Electric! That really is a milestone in the history of our life in Gridley thus far. I bet you could never imagine that you'd actually miss PG&E, right? Ohhhh, we miss PG&E. We miss them a lot!!!

In other news, my former hairdresser, Traci, gave me a couple of hints on how to get the green out of my hair. I'm going to put those to the test today and see if they help. I must say though, if you're looking for a good semi-perm electric hair color, Color Fiend sold at Hot Topic rocks. I don't think this shit wants to leave my hair, ever. 5-10 shampoos, my ASS. Hmmph.

So, it's a full week since my last chemo, and I'm starting to feel semi-not-horrible. That's about the best I can call it, but I'll take what I can get. Some food is going down and staying there, and my poor intestines seem to be back to almost normal. Nerve pain is off the charts though, as well as what I think of as "flesh pain," which feels almost like I had surgery again or something, in the pubic and genital area. Nausea comes and goes at random times, and I'm flirting with coming down with another nasty cold, thanks of course to the children. It's not their fault, of course, but they go off to school and mingle with other children and get exposed to everything under the sun, so it's natural that a few of those bugs get brought home. I just have zero immune system to deal with them, so the effects are magnified intensely.

And, of course, my energy levels are still very, very low. Megan tells me that her post-chemo recovery period was quite long, at least 6 months before feeling "sort of normal." Not what I wanted to hear, of course, but then again, nothing I've learned about cancer has been what I've wanted to hear. I've spent this past week resting about 90% of the time, or whatever feels right. The last couple of days I have tried to do 1 productive thing a day, since my house is an absolute pit--not too much, not pushing myself, but doing SOMEthing. So far so good--I've put away my laundry (just in time to have more washed today, lol) and cleaned up the mess on my big craft desk in the living room. Christmas crap is going to be next on the agenda!!! I refuse to have March arrive and still have one shred of Christmas decor laying around here!!!

The good news is that I don't have to do anything more than I'm doing, at least for the rest of this week. I have to go see Andy next week around this time, but that gives me two full weeks of slug-rest post-chemo before doing anything major. I can handle that, and I don't have anything on my calender for the rest of next week yet either. Let's hear it for having no life! Yayayayayy! (wave hands like Kermit the Frog here)

I never dreamed I'd be so happy to have nothing to do!

So, that's life from here. More of the same...

Raining on my parade

It is indeed a good day for ducks, providing the ducks in question have some serious stabilizers on them so they don't blow away. The promised rains have come, with a vengeance, and so have the promised 50mph wind gusts. I heard and felt them during the night, some of the four or five hundred times I woke up, and I've seen a couple since I've been up. It's trippy, you can just see the entire atmosphere outside shudder, like all the air is contracting.

So, speaking of being up in the night, and in the raining on parades department, we all knew I couldn't possibly have my wonderful dinner last night with no ill effects, right? That would be far too simple, and nothing is that simple around here! I zonked out right after I finished writing last night, but was awake at 1, sick, sick, sick. The weird thing is, I woke up and flew straight from bed to bathroom, thinking I was going to puke, but I really didn't. I was sick as hell, but nothing came up--a victory of sorts, right?

Now the trick is going to be keeping it that way... All the rest of the times I woke up in the night were pretty ok, but I've been nauseous all morning. I finally gave up on my coffee after only about a cup, and I've had to resort to the second round of anti-barf meds.

At least I have almost nothing at all to do today but sit still and watch it storm. I do have to head across the street a couple of times to visit my other favorite doggies, but that's no biggie. We got all prepared yesterday, so everyone's ready in case--no, let's get real, when-- the power goes out (Let's hear it for Gridley Electric!) and we can just stay put and kick back. Not only do we need all the rain we can get up here right now, with our record low lake levels and everything else, but a good raging storm gives you lots of mental justification for curling up under a blanket on the couch.

My goal for today is a second try at a successful bootie. I made a great bootie yesterday...I was using a bigger yarn than called for, so I tried making a smaller size than I wanted. It sort of worked, but not quite. I was knitting the newborn size, and instead of ending up with a 3-6 months size, I got something that would probably fit a two year old. Oops. Not quite the result I was looking for! So, sadly, I guess I can't use the wonderful organic cotton I wanted to use; I'll have to use actual baby yarn sized right for the pattern. It's a bummer, because Lion Organic Cotton has got to be the softest, most wonderful yarn I've ever touched in my life--even at a tiny fraction the price of some of the other luscious yarns I own. It just screams out to be used for baby things because it's so clean and soft and yet totally machine washable. It actually gets softer when you wash it.

Hey Lion Brand--make this stuff in a sport or DK weight, please!!!

I will make a mate for my lone giant bootie at some point, and find myself a two year old to give them to. No point in wasting the one I got done!

My outing last night might have been minor, but the truth is that I'm feeling it pretty seriously, even in such silly ways as the backs of my legs telling me what they think of me wearing heels last night. They're not pleased, just in case you were wondering. My body is telling me some things very clearly, and I plan on listening, and being a very good girl today.

But on a quick side note--I forgot to mention last night the interesting looks I
got. I made a point of actually doing a full, major makeup job, including
the special face tint that makes the gray cancer-skin color go away, to try and
disguise my sunken eyes, and made a point of wearing straight black, so as not
to clash with or call attention to my still quite very green hair. Didn't
help...all of the other folks dressed to the nines for their dinner at Claim
Jumper were pretty riveted by the green hair. I'll give our waiter points
for not blinking though.

Off to cruise for something watchable on tv and try getting started on a new bootie while my tummy settles; after that, a shower, clean jammies, and back to my spot on the couch.

Happy Valentine's Dinner, er, I mean Day!

Ok, I admit it, I am much happier that we got to go out to our wonderful dinner than I am about anything else right now.

My tummy is pleasantly full of salad with piles of bleu cheese, macadamia-crusted halibut, grilled asparagus & jasmine rice with citrus beurre blanc sauce and red velvet cupcake with vanilla bean cream cheese frosting.

I'm utterly EXHAUSTED, but happy. It was actually pretty weird... We left around 5 to drive out to Roseville, which takes almost an hour and a half. Really quick stop into Frys to get Lloyd a backup battery for his camera, and then over to the restaurant. We got seated almost exactly at 7, when our reservation was, which was fantastic, considering they were telling the walk-in people that there was going to be a two and a half hour wait! Had dinner, and we were out of the restaurant just after 8 (we pretty well never linger over dinners) and heading home........and I was so tired in the car, I couldn't keep my eyes open!!

It was a really weird feeling, nodding off all the way home, like those few hours of sitting in the car and going to dinner knocked me out flat. I finally gave in and let myself zonk out the last 20 miles or so home. I'll probably be back asleep within a half hour.

I guess that tells me something about my stamina levels post-chemo & radiation, huh? Come to think of it, going to dinner like this was the most strenuous thing I've done since Christmas. I am in a lot of pain now though, mainly in those strange places in my lower back that like to hurt so much from time to time. Lesson learned!! But, I have to get some sort of "exercise" and out-of-the-house time sometimes, and I was really and truly ok and ready to go--no pushing myself, no stretching to make it happen, I was all good to go.

But, I went out, I had a wonderful time, I had a wonderful dinner with my wonderful husband and now I can hibernate for the next couple of days. Or weeks.

Our storm is coming in...I've been watching the clouds blow across the sky all day long and now the rain is finally starting here for real. This is supposed to be a monster with 50mph winds starting overnight. We got the yards storm-ready today, putting things where they won't blow away or become deadly projectiles, made the kids get their wind-up flashlights where they can find them easily and otherwise battened down all our hatches. It's still pretty quiet out there, but I'll actually be quite happy if it rains for the next few days without letting up. I don't have to be anywhere, and good lord do we need the rain.

So, the verdict is, dinner out was good, dinner was exhausting, and now I shall be a good girl and be very well behaved and stay in the house and watch the storm.

I hope everyone out there had as lovely a Valentine's Day as I did!!

Borderline humanity

Today, we are cautiously optimistic. Not necessarily optimistic about anything specific, like going out to my Valentine's dinner or something, just ever-so-slightly optimistic that I'm feeling better. I'm having some decent moments right about now, where I don't feel like barfing, haven't been having diarrhea, and other than a mild headache, things aren't too bad.

The feeling is actually so odd to me that I had to stop and think about it to figure out what it was!

And, of course, it could all chance in a heartbeat, hence all the caution. But I'll take what I can get!

A big victory for the day is that Lloyd is currently out picking up my new pain pills, after fun Medi-cal delay issue, so I don't have to worry about running out and going into withdrawls again. See, the stuff I was on has been discontinued--no one can get it anymore. So, we had to find something else, and submit all the stuff to Medi-Cal for approval. Nope....what Andy wanted to use wasn't on their formulary.

Sure, we could have paid cash for it...$750 for a month supply. No, that was not a typo. I have another pill, an anti-barf pill, which has a cash cost of over $550 for 12 pills. This shit is scary!

SO, Lorrie, Andy and I figured out another medicine that should do the job on my daily pain issues and keep me functional. In the meantime, while all of this was getting sorted out, I used some standard cheap Norco/Vicodin that we could pay cash for, but the problem with that is all the Tylenol in it. That's why we have such an issue in the long term--finding a med that isn't mixed with Tylenol or something so I don't end up with major liver or lung problems from all that aceteminophin.

My life is never boring.
Hopefully, getting this new stuff will mean that I can relax for a while. It's hard to work on the recuperating when I'm having to stress over getting the right meds and worrying that I might run out before the government approves my new stuff. Having the Medi-Cal coverage is a godsend, but understanding it takes a lot more brainpower than I have!

Let's all just hope for a continued march toward feeling human....onward....

More of the same...

Well, I went with the liquid diet yesterday, and then tried some white rice last night on the advice of my doctor. Barfed up the rice somewhere around 1 am, and still had diarrhea all night and this morning. More imodium, and maybe we'll see some improvement soon.

I guess that means I'm going to do pure liquid again today, and definitely no rice. I have GOT to get past this in time for Saturday, so that I can go out to my amazing Valentine's dinner. I am very excited about it--macadamia crusted halibut on coconut jasmine rice with a citrus-ginger sauce, followed by a red velvet cupcake. See why I'm excited?

So far today, I'm not even motivated enough to take a shower. I want to lay still and veg out completely, so that's what I'm doing. My darling husband sent me a gorgeous bouquet of longstemmed red roses (totally violating our "no gift" agreement!) and I just got finished clipping and fiddling with those, so now I'm tired. Little things like that count as exercise in my life at this point. I can't even imagine getting down on the floor and doing any sort of REAL exercise yet!

And I think that somehow the dogs have figured out that I'm supposed to be laying still. Both of them are laying with their heads across my legs and feet, which does a pretty good job of making sure I don't get up. They're in on it now, I guess.

See, I'm being good. I'm going to lay here like a slug and work on knitting and reading and goofing off on facebook and drinking my Gatorade. Pffffft.

More bird pictures

Lloyd just got a new camera, and found a bunch of very cooperative cranes out on a back road. We've never gotten this close to them before.

These are the sandhill cranes, some of the biggest birds I've ever seen around here. Come to think of it, we have some of the biggest birds in North America around here. Let's see... The bald eagles are about 34", with an 80" wingspan. The golden eagles are about 35" and 84" wingspan. The tundra swans are 52" with a 65" wingspan, and the sandhill cranes are 44" with a 75" wingspan, and the blue herons are 46" and 73" wingspan. Those are some pretty impressive numbers! I do find it interesting that the much longer-bodied birds have much shorter wingspans than the raptors do. The books I'm looking at don't give weights though. I'm curious about strange things. But, we have seen more birds this year than last year, especially these big guys, so it's fascinating to me.

Meanwhile, day one of recovery from treatment is going fairly well. I'm in my usual position on the couch letting my mind rot with the Food Network. I'm very cold, so I have a robe and lots of blankets going on. Cold--yeah, it figures, I'm done with treatment, and it snowed last night in Paradise after I left. Ah well. I'm happier not going up there, even if it is gorgeous and snowy now.

Phsyically, I'm really feeling like crap today. I finally had a minor crying fit, but not enough to qualify as a full breakdown, and instead of giving some sort of cathartic release, all I got out of the deal was a really horrible headache and a case of the all-over shakes. Oh well...it is what it is. I'm still being destroyed by diarrhea, so I'm on a liquid diet today, hoping to give my poor bowels enough of a rest that things will calm down in there before I end up hospitalized or something. Tearing up and *nearly* crying every time I hit the bathroom is bad enough, thanks. Otherwise, I am exceptionally weak and exhausted, so I am doing nothing more strenous than this. Oh, I did hang up some clothes in the closet today as a form of exercise. That was my physical exertion for the day. I made a smallish clearing on the cedar chest in the closet.

Tiny victories. That's enough for now.

I'M DONE!!!!!!!!!!!!!!!!!!

What else can I say?

Well, I can say that the wonderful ladies up in chemo gave me a nice little "graduation" certificate, just like I got from radiation. I took in flowers for them, and a coffee cake thing for everyone up there, and I did indeed wear my sock monkey flannel jammies. I got some interesting looks for that, even more so when Aimee & I stopped at Safeway and Walmart on the way home.


What's sad is I'm sitting here on the couch and every time I move my right arm, I keep unconsciously grabbing for my IV lines so they don't get caught. I don't HAVE any IV lines anymore, but I'm still doing it. I think I'm very tired.

The final session wasn't an easy one. They had to try several times to get a vein to cooperate, and the one that finally did was reluctant. We had to do some adjustments and none of it was comfortable. I also had to have several extra "things" today, and I'm not even sure what--different meds or fluids or something, so the whole session took almost as long as it took last week when I had to wait and have radiation afterward. Dunno... So I'm home, exhausted and trying to recover.

Otherwise, I'm just glad it's over. For some reason, this one just drained me. I need to eat something decent, maybe I'll get a little more energy that way. In any case, I get to sleep in tomorrow with no alarm clock (assuming I'm able to sleep through the night with diarrhea hell here) and zonk out all day long if I want. That will be a wonderful thing... Off to forage for food.

The end is in sight...

Well, 12 hours from now, I'll be hooked up to an IV for my final chemo treatment. I've got flowers for the staff up in chemo, along with a coffee cake ring, and flowers and the little bracelets I made for the girls down in Radiation. It should be quite festive. I'm giving serious thought to wearing my jammies for the occasion--perhaps my flannel sock monkeys.

Right now, I'm combating this amazing new pain. It is actually amazing, in its scale, scope and discomfort. I've never had anything like this before. The entire back of my left thigh, from the knee all the way up into my butt feels like its on fire. It's kind of a tingly, very burn-y, weird thing like you wrapped a heating pad around the leg, only it HURTS. Major drugs don't make it go away. It started this morning on the way up the mountain to see the doctor for a little while and then went away and I forgot about it. It came back tonight and shows no signs of going anywhere. It changes a bit sometimes and burns differently, but that's about it. Bitch, moan, whine, whine. Ahhhhh!!!!

Ok, I'll quit bitching now. Since I started writing this, it has actually dulled down a bit and feels more weird than painful. I'll take what I can get. At least it's never boring to be me.

In other news, I saw Roni, who is Dr. Mazj's PA today for a general check-in. Everything is going as planned, and my blood work results are all looking ok too. My 60-oz-a-day Gatorade habit seems to be helping get my numbers up where they need to be. My bowels are still a very, very angry place to be. I was reading my giant cancer book tonight, and I think I may actually follow their advice and go on a full liquid diet for a few days to give my bowels a rest. I hadn't thought of that, but it seems like it would make sense.

But, I am doing a fairly decent job of recuperating and not pushing myself. I've been getting at least a short nap in every day, I don't feel rested, but I am napping, and otherwise blending into the couch. The most strenuous exercise I forsee this week is going to be putting away my laundry before I lose my mind.

I can't think of any other interesting updates, and I'm pretty well falling asleep, so I think that means it's time to go.... More to come, I'm sure!

I'm going to guess that not everyone reads all the comments that get posted on here, so I feel compelled to post Mom's latest here for you:

So let's sum up here. You went into hyper, professional patient, find and
get the best treatment mode six months ago. You hunted down decent doctors,
a great treatment center and with their help got the help you needed to pay
for treatment. You did tons of research, went for tests, talked to everyone
under the sun and finally started radiation and chemo. Then you endured five weeks of being turned into a roasted marshmallow and will end six weeks of being poisoned on Tuesday. You've been puking for weeks, you're in horrible pain as a result of nerve damage and the treatments, you've lost enough weight to scare the shit out of your mother and you're so tired you can barely crawl up and down stairs. You might be surprised you're teetering on the edge of depression and you're
weepy, but I'm not. Reaction had to set in sometime. And you know what? A
whole lot of people wouldn't even be contemplating anything active for ...oh....months. They'd be too busy with being curled into a little ball and being miserable. Cut yourself some slack, sweetpea. You are allowed to cry, grieve, sleep, scream,
laugh, daydream--anything you want or need to do. You don't have to be Wonder
Woman. Don't even try. Listen to all the people who love you and rest. You have fifty, sixty years to deal with all the other crap, like putting away Christmas boxes. Don't sweat the small stuff. Right now its all small stuff. Try and remember that. Love you Mom

Gee Mom, when you put it like that.....

I'm trying. I was pretty good today. I didn't do anything but lay around on the couch, watch tv, knit and read, and zonked out for at least two good hours. We (both of us) changed the sheets on our bed, and I count that as my exercise for the day. I promise to do pretty much the same exact things tomorrow. Monday I have an appointment with Dr. Mazj and blood work to get done, and of course Tuesday is chemo, but Wednesday I can re-install myself on the couch

Tonight we all watched Madagascar 2 on DVD, and headed on up here to bed at 10. I'm totally exhausted, so going to sleep won't be any problem, even if staying asleep is. The evil diarrhea is back with a vengeance. I'm not going to miss any of these side effects, but I think I'll miss the diarrhea the least, by a long shot. A very long long shot.

It's a start... (with update)

Day 1 of being post-nuking, trying to be very good to myself and recuperate: I slept until almost 10, after only getting up a few times in the night and early morning. How's that? Not too bad, right? I think I was tired beyond tired. Wait, I KNOW I was tired beyond tired.

Now I'm getting caffeinated and wondering why I'm so weirdly near-tears depressed and upset for no reason at all. I think my weird dreams had something to do with it, but I can't remember what they were.

Not a clue I feel so crappy, but I do. My grand plan for the day involves showering, putting on my new Nick & Nora nightgown (oh, it is SO cute, covered with print of vintage Valentine cards) and curling up on the couch to work on felted flowers and knit. No reason for depression there. In fact, I can't think of a SINGLE reason to be upset! But I am. That pretty well pisses me off. Well, I guess pissed is better than depressed and weepy, right?

I think the problem with either is that I only manage to go about 85% of the way to the emotion and never all the way--all the way being the point where you actually let loose the waterworks and have a good cry or throw things at the wall or scream and somehow release all the tension and feel better. Nope, not me, I just kind of fester. I'm too well-behaved to scream or throw things. It's kind of a bummer sometimes, really. Maybe I should get Lloyd to hang a punching bag in the garage for me. Well, no, on second thought, that would just result in many, many broken hand bones.

Maybe if I ask really, really nicely, I can convince Lloyd to take all three children somewhere for an hour so I can scream and yell in peace and quiet, ha ha ha.

Anyway.... So, it's almost 11 am, I've done nothing with my day but drink coffee, write Muppet trivia, bitch about being depressed for no reason at all and help direct children in the creation of very strange breakfasts. I supposed that's a fair start to doing nothing for the day, right?

Off to take a shower and see if that helps. Sometimes it does... More later. Blurgh.

Update: I forgot to finish something earlier--explaining the physical side of where we're at right now.

Where we are, mainly, is in pain. This is apparently normal, from the radiation, and apparently far, far worse if you have the internal. Looks like cancelling the internal is even better than I realized! Basically, the pain is in the area that's been nuked (duh...)-- my lower back/sacral area aches, a lot, and has sharp pains from time to time. Apparently, "insufficiency fractures" of the sacrum are not unusual, which is a little scary.

In the front, if you drew a line through my belly button, horizontally across my tummy, and that was one line of a triangle, and the other two lines went down to meet in the genital area between my legs, that entire are feels like I've just had surgery again. Or been kicked by one of those pretty horses in the pictures a few posts ago.

From what I've read on various message boards, this stuff typically appears right about the end of treatment, which is what I'm experiencing, and unfortunately sticks around for quite a while. Fatigue is another major side effect of the radiation and the chemo, and I'm feeling that quite strongly too. I'm going to work hard on getting those naps in. Joint and muscle pain is another one that starts later in the game and sticks with you, and that's going on now too.

So, I'm basically right on track with all the things that are supposed to be going wrong! The depression is actually on the side effect list too, so I shouldn't be surprised. The shower and everything have helped on that front, so now I'm laying around on the couch with an ice pack on my lower abdomen, working on some knitting. I feel about as decent as I'm capable of, so I can't complain. Well, at least not too much...

Radiation is done!

Yes, I think that radiation being done actually merits a full chorus line, something that hasn't appeared on here in a long time.

Do I feel good, mentally, emotionally or physically? No. But that's ok--radiation is over.

It was a momentous day. Before my treatment, Rachel (one of my FABULOUS radiation techs) changed the music in the room to "Pomp and Circumstance" (that's the real name of the song played at graduations), followed by "Celebration" and the theme song from Happy Days to mark the occasion. I was also given a certificate and a sticker for my car proclaiming my survivorship.

They made me very glad that I'd made them some little parting gifts. I figured I'd give them their things on Monday or Tuesday so that they have a work-week to enjoy the flowers I plan on taking them. I made each of the girls a little felted flower bracelet, hopefully they'll like that. They made the whole process so much easier on me from day one--literally holding my hand when I went to my first simulation and was having a panic attack, staying late to accomodate a messed up day in chemo, and always, every day, seeming genuinely happy to see me and fun and friendly.

The gang up in chemo is wonderful too, and I have something planned for them on Tuesday, I just have to finish it! There are a lot more people up there, and I haven't spent as much time with them, so it's going to be a small group gesture rather than individual gifties. I've already felted petals to make several needle felted flowers to put in a little vase for them. Then they'll have some flowers that don't die.

So, yes, here I am finishing up treatment, supposed to be working on resting, relaxing and recouping and I'm thinking of making things for the nurses in chemo. Typical me, huh?

I never did get around to making any lists today. After radiation, my DH took me to eat crab in celebration of the day, and then to get me some new squooshy jammies to help my weirdly depressed mood. For those of you who don't know, that's the answer for me. If I'm having a bad day, I'm upset, I'm depressed, I get new jammies and it makes it all better; or at least a whole lot better.

So, we did our little bit of shopping, and then headed home to slug-out on the couch until dinner time. Aimee brought Em over to our place for dinner for the first time, so we could all hang out, and also so that Emily could play with Anna for a while. A good time was had by all.

But, thinking about a list of what I need to do over the next, say, 2 months, I think that Auntie Annie is on the right track. Realistically, I don't know that I can always put myself first for a whole year, but I can definitely handle a few weeks of being absolutely first. That's a good item #1. Getting back into yoga is on there and so is putting away the Christmas stuff before it makes me insane. Oh, and putting away my laundry before that makes me insane too. One or two active items here and there aren't bad, they're good-we call that "exercise." I'll have to jot down the rest of the things as they occur to me.

I just have to keep reminding myself that I need to recover A LOT in the next two months if I want to go to Vegas. At least I hope that having a goal will motivate me to take really, really good care of myself. I hope.

Time to start. Right now. I have a terrible headache (tension, anyone?) and I'm going to try and get myself relaxed into a state of ready-to-sleep-ness very soon, with a goal of sleeping in until at least 9. Ten would be better, but I'm so used to getting up every morning, it may take me a couple weeks of being "off" again to get back to a normal schedule. And I am making a promise to myself that I will take a nap tomorrow. In fact, I think I will set an alarm on my phone to remind me to do so.

Wish me luck. I'm going to need it!

Last one!

Yup, the last radiation treatment is tomorrow..........If I can survive the night and MAKE it to tomorrow so I can get the treatment and be done, life will be wonderful.

So far, it seems its going to be another night of racing to the bathroom every 10-15 minutes. I've been seeing a pattern develop over the last few weeks, where the massive intestinal upset starts a little bit sooner after chemo each week. I've already taken 4 Imodium, trying to get it to stop so I can get some sleep, but no such luck at this point. I have a husband, two dogs and two cats snuggled up here in bed, all but one of them snoring--I shit you not--and I will probably not sleep at all unless that Imodium finally kicks in. That just isn't fair!

I just keep telling myself that this is it, the last day I have to set an alarm, even though it's not; I still have chemo on Tuesday. For some reason that doesn't bother me at all. I'm going to take all my extra hats in, along with thank-you goodies for the nurses and radiation techs and make merry on Tuesday, with the happy knowledge that as soon as the chemo is done, I can go HOME.

See, the catch to chemo so far is that it has to be four hours from the time the chemo starts going in until radiation can be done, meaning big time gaps between. The chemo infusion runs over an hour's time, so that still leaves three hours of killing time. Make sense? So, this time, I won't have to have radiation afterward, so no sitting around killing time. I don't actually mind chemo or radiation too much; getting it is totally no biggie-- it's the after-effects that are killing me!

<------Poor Pookie....his tummy is mad too.

Finding out that some of the side effects can still come on months and months after you're done with treatment is what really got me. Scout was telling me that he and Megan went to Hawaii to celebrate her finishing treatment, some time after she finished chemo, but that they'd really overestimated how quickly she'd be recovered from it. He said they left the hotel room maybe once on the trip because she was so sick. I'm trying to use that as my cautionary tale, something to keep in mind when I find myself frustrated at the passive, slow resting and recovering.

I am very, very glad that tomorrow is it for the radiation. It's funny, because it was chemo I was scared of at the beginning, and it's the radiation that's done the most damage to me. Surprise, surprise.

I think Mom is right on several things. I think I'm going to have a very, very hard time staying still enough to finish the passive "recovery" phase of this. I think I need to teach myself to sleep half the day several days out of the week. I think I am too tired to even think, much less feel anything like relief in a real way. I can't feel much of anything, actually, except tired

That's been one of my biggest problems throughout this whole mess... I'm so busy being active, as Mom said, treating the disease, that I haven't got time or either mental or physical energy left to process any of it on an emotional level. I suspect it'll just hit me one of these days out of nowhere, like a ton of bricks, and then I'll be in trouble. Hopefully not just yet...I need a few days sleep so I can build up enough strength to cope with THAT itself. I haven't felt creativea t all, so no writing, no journaling it out or anything,but I think it's about time I start working on that, chemo-brain or no chemo-brain. Old Yeller just doesn't do anything for me.

Hell, there are a dozen things I need to be doing for myself that I'm not, because I'm always trying to use that precious little free time to take care of kids, pets, etc,. Maybe that will be tomorrow's goal-- Sit down and make lists of what I need to do for me. Lists are my savior.

Well, I think my insides are going to cooperate enough that I can at least get some sleep. I should take advantage of the break in the storm, so to speak. Between the dogs and the cats I have about a square foot of bed real estate to myself, but at least there's only one snorer at the moment. My big grey pussycat is snuggled up next to me, which he doesn't do often, so I should take advantage of the situation and try to get some rest. Cross your fingers for me.

Yup, it's over!

So why do I feel so depressed?
Tomorrow is my last radiation treatment, and Tuesday is my last chemo. Then it's over. Period. No internal at all...

I talked to Dr. Whalen yesterday on the phone and he made it clear that he thought the potential for damaging me far outweighed any benefit (some microscopic percent of a percent less chance of recurrance) I might get. Well folks, I have to tell you, I feel pretty damaged as it is........so I'm willing to buy that. All of my esteemed doctors agree, Whalen, Pisani, Davis & Maj all say no-go, there is nothing in the literature to show that it could do something for me, and it's not usually done in patients with my staging, SO.........that makes it pretty clear from the medical side.

I think if you would have asked me 3 weeks ago, I would have had a panic attack, and told you that I'd be forever worried about "what if" if we didn't do it. Now, after having been through almost the full 5 weeks of external and all the chemo, I feel like I have really been zapped to death and there can't possibly BE anything else living in there. I feel like it's amazing that the stuff that's supposed to be there is still there.

So, I'm ok with it. Hell, I'd say I was THRILLED with it, but I'm too tired to be thrilled. I am actually kind of wrung out, feeling miserable, depressed-for-no-reason, wanting to cry (also for no reason) exhausted. I'm fairly certain that's normal at this point, but still not any fun.

I'd also give my right arm to be staying home today, curled up on the couch waiting for the rain to start, instead of doing the cross-valley marathon to see Andy, but we must go see Andy. For you Bay Area types, it's like having to go from Fremont to San Francisco, then down to Los Gatos and back to Fremont. It's a lot of driving.

If it doesn't start raining (I hope it DOES!) it should be a great bird watching day. The geese and ducks and swans LOVE this kind of weather, logically enough, but so do the hawks and eagles, for reasons we haven't figured out yet. I guess it's just cool enough to bring out lots of prey animals without being too cold? Dunno, but the gray overcast days are when we end up counting dozens and dozens of hawks in one drive. Maybe I'll see George or Martha or one of their friends and that will lift my mood a bit. I will be going on a road I haven't been on before to cut across the valley, so there's always the potential for something interesting. Gotta look for some bright spot, right....

I'll also have lots of nice knitting time, in the car, and during the inevitable hour+ sitting at Andy's office. Ok, I'm trying, but it's not working-- I'm still miserable and depressed, so oh well! I'm allowed.

I think it's probably actually a pretty normal response to have these strange mixed feelings about the end of treatment, especially since it came so suddenly, now that we've cancelled the internal radiation. I had anticipated still having more ahead of me, and now it's all of a sudden almost over--and I haven't processed that emotionally yet. I'm glad, of course, but I think there's some sort of emotional dam about to burst in there, some sort of combination of happiness, fear, relief and other things that I can't think of the words for right now. I guess, since I first found out I had cancer, I never saw an end in sight, and I can't quite process that there is one. I sure as hell can't process the words to explain what I'm talking about properly, and that's driving me up the damned wall!!!! Hmm. I'm going to go get some stuff for dinner in the crock pot and see if I can figure out the words I'm looking for.

Hmm....didn't work too well. All I got was that while I'm really glad it's going to be over and that I can start the countdown to remission, I'm also still going to be scared. This will be the first time in 6 months when C A N C E R is not going to be the absolute center of my daily life, doing something active to treat it, fight it, whatever.I have to figure out how to go back to having a normal life again, and put aside that daily obsession with cancer.

I guess that's as good a description as any--I have to figure out how to go back to having a normal life and not spend every waking moment dealing with actively fighting cancer.

That's going to take some getting used to! It'll be good, of course, but it's also scary. I still have to spend a couple of weeks treating myself as if I'm made of spun glass, to try and get all of my poor carbonized insides back to semi-normal states, but after that, I get my life back... assuming I can figure out what that's like! Weird.........

Big update progress news!

Major big news...

I don't know anything for sure yet, but I found out yesterday that there may in fact be NO internal radiation happening at all.

I'm scheduled for an ultrasound at my GYN's office on the 12th, to see where all my internal organs are sitting (what's left of them, ha ha) and just how carbonized they all are after the month+ of nuking.

After the radiation doc sees the results of those, he'll know a couple of important things--if my intestines and bladder are sitting in such a way that would make the internal radiation just too damned dangerous to them to go forward and if they've been too damaged by the treatment thus far to handle any more torture.

He's conferred with my surgeon, and the two of them are of the opinion that I might not even need anything else after this nuking and chemo are done; that I might have been beaten to enough of a bloody pulp that anything else would be superfluous. Who knows at this point!

All I know is that it is, in a way, good news. Well, good news if I don't NEED any more treatments; less good to find out that my internal portions have been so damaged that they can't take any more. At the moment, I confess that the best part of it all is learning that I get to sleep in Monday, Wednesday and Friday of next week. I could REALLY use that right now... I felt pretty destroyed last night after chemo, and zonked out really early, somewhere between 9 and 10. Tomorrow, I have to go from radiation up on the mountain allllllll the way down the mountain and across the valley to see Dr. Andy to get refills on the all-important pain pills. That is an exceptionally major trek, an hour and a half, and there is just no way I'm strong enough to do it, so thank god, as usual, for my darling husband.

Left to my own devices today, I never would have made the crawl down the stairs. It is only fear of screwing up on the last three days of radiation that made me fall in the general direction of the kitchen. It will be all I can do to get back up those stairs and perform some semblance of showering and dressing....yes folks, it is that bad today. It is really a bad, bad, crappy day in cancerland. Coffee is helping. Maybe I will wear my sock monkey jammies to radiation. No one would bat an eye.

I have no real idea what the state of my intestines is, in relation to being carbonized, but I can tell you from my experiences of the last few days, they're probably crumbling apart, based on what they're doing to me and the pain they're causing me. I get to alternate the diarrhea with sort-of constipation, with extreme pain and bleeding. That leads me to think things are not so happy down there in the nuclear fallout zone. Peeing is also excruciating--that feeling like you have when you have a major urinary infection, only in my case, it's just from being essentially sunburned to all hell from the inside out.

All that, and every ounce of my scrawny body feels like it's operating in double gravity right now. Very hard to lift my legs and I'm made of stone. I guess all the warnings about the side effects kicking in around week 4 were for real, huh? At first, it really wasn't all that bad, but now, I feel like I'm just destroyed.

I'm starting to really understand that as soon as these treatments are over, I DO DO DO have to act as if I just came home from surgery all over again and go to bed for a couple of weeks to recover. It seems almost like "faking" or something, because I don't have any gaping incisions or something, but the theory is that I'm supposed to treat myself as if I do to try and recuperate. Maybe they can give me some sort of major sedation to force me to lay still. We all know that isn't my strong suit. Well, except right now. I'm only typing to keep from laying still.

Maybe I can find a place in the house to just scoot all the Christmas stuff over and let it sit there till next year. There's an idea, since I don't see myself getting it handled any time soon...

Ok, my DH is in the shower and is almost done, so that means I should start hauling myself up the stairs for my turn. I keep telling myself that all I have to do is get clean and marginally dressed and crawl to the car........................Sounds like running a 10k right about now.

Good news, but a crappy-ass day folks. I guess mixed blessings are the best we can do today, so I'll take what I can get.

My, how time flies!

My, MY how time flies when you're having...well, not fun, but something or another. Yesterday marked the beginning of the last week of external radiation (week 5 of 5!) and today is my second-to-last chemo treatment. Three weeks of internal radiation to go, starting either next week or the week after, and then I can start the countdown clock to remission.

Of course, I knew this time would come, but I have to admit, it seemed realllllllly far away at times. After being unemployed for so long, having to be somewhere at a certain time every single day for weeks on end was kind of a shock to the system, especially when I'm generally feeling too horrible to want to go anywhere in the first place.

But it's almost over! Wow! That is almost shocking when I think about it now.

Last night was a horrible night. All of it...I think I slept maybe from about midnight until 2, and then tiny bits of sleep in between trips to the bathroom from then on. I finally got up at a little before 7. I guess it's a good thing that all I have to do today is get punctured and lay in my happy little recliner at chemo. I'll probably conk out on Aimee at some point, but I guess I'm allowed to. She'll understand.

Needless to say, tummy not happy. That's not a good sign, either. I usually get the diarrhea starting a couple of days after chemo. It's kind of become routine--chemo, then diarrhea and massive attempts at hydration and stopping the diarrhea. This week I'm running behind before I even start, which makes the job a whole lot harder. Grr.

All the ladies at radiation yesterday loved the green hair. I'm sure the chemo nurses will too. The funny part was all the other people-- other patients, folks in the lab, etc-- who weren't in on the joke, staring at me and me forgetting that I had green hair and wondering what they thought was so interesting. In the cancer center, anything goes, but I forget about the rest of the world.

Let's see, is there anything else to report? I can't think of anything. I have tons of email I should be sitting down and returning...if I owe you one, I promise I will get there, just probably not today. Other than my lovely sleepless night of misery and the impending end of phase 1 of radiation and chemo, I don't think I have anything else medical to update. I feel like total hammered crap, to sum up, but that's not anything new or particularly noteworthy, that's a normal state of being, so I guess that's about all for today.

I mainly wanted to post a few more green hair glamour shots. For some reason, we just can not get the green to show up well in photos and I don't understand why. The streaks are WAY, way, WAY greener in person. They're a really nice, rich pretty color. I have no idea how long they'll last ("5-10 shampoos" says the bottle; could be a week, could be a month) but at least I can say that I dyed my hair green before I was 40, right?

And for some reason, my eyes look really strangely big in these photos, which makes me look like some bizarre anime character, which I also do not understand, but oh well. I've used up all of my waste-able time, and I have to go get in the shower now so I can be clean and pretty to get punctured and have toxic chemicals pumped through my veins. Such is the glamour of my life.

'Nuff said.

Side effects, and other fun

So, I was reading my special radiation and chemo books last night, checking up on all my fun side effects, and do you know what I found out? I found out that I have to look out for side effects that don't show up until SIX MONTHS after the treatments stop.

Six months! Does anyone really think that in six months, if I get dizzy, or have fatigue, joint pain, or appetite loss, that I'm really going to automatically think it's a chemo or radiation side effect? The list is astonishing...

And, unfortunately, this weekend, I have lots of them. I am finally experiencing some hair loss, but only in the area that was radiated, along with a lot of surface skin pain, and deeper flesh pain in the whole pubic and genital area. It just feels LOVELY. And I'm still sick. The antibiotics are helping, but I am still sick, so I'm sticking with Dr. Mazj's bed rest theory. I feel very guilty, sitting on my ass, but I feel like I'll probably fall over if I don't sit on my ass, so there you have it.

I need to go type up a concise list of all the millions of side effects I need to be watching for and treating. I think I have about 12 of them right now.

Oh, and the poll thing--just click one of the responses, once, please. I'm just really curious to see how many people are out there lurking...no need to ID yourselves, just to give me a number. I get the feeling that there are a lot more of you out there than I know about, which I find fascinating.

Hope everyone's having a good StuporBowl Sunday. I've been watching the Puppy Bowl, which I think is far more exciting...but that's just me. I'm a sucker for cute little fuzzies, but everyone knows that anyway.