Another day, another appointment (or two)

Ok, here's a good one. I just spent more on special cancer-symptom-relieving pants (otherwise known as bike pants) than I did on my wedding dress.

If that's not disturbing, I don't know what is.


So, we went to the chemo education session, and the best news of the day is that my infectiousness shouldn't delay my radiation and chemo start. We have a week until it's scheduled to begin, and a very strong antibiotic on tap, and Roni (the PA in chemo) think's we'll be ok. She listened to my chest and gave me a bit of an inspection, and as long as the antibiotic does its job, I should be able to start as planned.

I will explain everything, but FIRST!!
A full hippo-birdie salute for my little bitty baby brother, who is getting old enough to be a real grown-up now!

HAPPY BIRTHDAY CHRIS!

Back to me and my chemo appointment.

Aimee came along with me and Lloyd and backed me up on taking notes, which was very comforting. Any time I can cross something off of my "I might forget" list, it's comforting, and I took a lot of notes today... Let's see if I can give an overview of the meeting, which was very informative...this will be in no particular order, but I just want to get it out there and then you can ask me questions:

• Cisplatin (the chemo drug of choice) is given by IV during the once weekly sessions--arm veins. We will have to make sure the veins are holding up well, cisplatin has a habit of "leaking" into the surrounding tissue. I had some trouble like that with IVs after surgery.
• If we have vein trouble, they will have to install a port. We do not want a port--it's another general anesthesia minor surgery to put this thing under the skin to give me my chemo.
• Chemo acts on all fast-growing cells, cancer being fast growing cells, which means it also acts on all mucosal linings like in the mouth, meaning that I'm eligible for mouth sores as well as other fun things
• First hour at chemo, I get hydration fluids, steroids, zofran, ativan, D5 (ok, my notes say what looks like D5, Aim??), saline, magnesium, potassium
• Second hour, I get the cisplatin, along with fluid, lasix (that's what the note says, but I have no idea what it means) which I think is to protect my bladder. Aimee may be able to clarify that.
• I have a list of about a thousand things for which I should call the hospital or go to the ER if I get them

I think that's it for now.........I'm tired of writing.

Almost awake...

HAPPY BIRTHDAY PAULINE!!!!!!!!!!!

(Now why in hell don't they have BIGGER fonts, and more of them on here? Geez.)

And now, a word from our sponsor: True, real best friends are the ones who go through hell, and more, with you, and are still there when you come out on the other side. I am lucky enough to have a few of those. If you are too, take a minute and be really grateful, because the times come when something really horrible happens to you (like, oh, getting cancer, just to use one example) and those friends are there. Y'all know who you are, and I have learned couldn't live without you.

Now back to our regularly scheduled blogging...

[when we left here last night, I had nodded off over and onto the laptop, so I called it quits]

At least y'all can't say I don't know when to quit. Sorta.

Up to get ready for the doctor's appoint up in Paradise today--we have a "chemo education" session with the PA in the chemo dept this morning, followed up by a lymphedema clinic visit in the afternoon, to assess how much help I need from them, and get me started down the right road to getting it.

I might wake up sometime before the first one starts, but maybe not--who the hell cares, my DH has to drive me up the mountain this time. :-) I also get to spend more time goofing off and writing silly blogs HAPPY BIRTHDAY PAULINE in the morning when he drives me because it doesn't take me as long to get ready.

Which jammies shall I wear today? Hmm.

Once chemo starts, whenever that may be now, the plan is that Aimee will take me on chemo days--the days when I'm not able to drive myself. Those are going to be long-ass days, and her taking me will give my DH a much-needed and well-deserved break. {The man ***deserves*** a trip to the Islands, but that's not an option right now. Sadly.} It also gives me some much-needed time with one of my friends...something I desperately need, but need to learn how to ask for better. Some of you kind of force it on me whenever you have a chance, and I really do appreciate it, just as long as no one eats Nemo.

Happy Birthday Pauline!

Bonne Anniversaire!

And now we've reached the most important question of our morning--what, if anything, is for breakfast? Sometimes, breakfast is the most important meal of the day, and sometimes, it's the most disgusting thought ever. The fun part is that I'm never sure which it will be until riiiiight before. Hmm....I have an hour and a half to decide, along with all the rest of the getting ready to go. happybirthdaypauline

What other crucial information do I need to impart? Oh yes, my fever this morning was 102.6. Not a happy number. My goo was very green this morning, but there was no red to be seen, which was an improvement. Green is still a very unhappy color though.

I would bet a relatively useful appendage that I am quite infected with something or another, so today's visit to the cancer center should answer a lot of crucial questions about when I start chemo and radiation.

I am guessing they will be delaying everything until I've done a course of antibiotics, but I have no idea how this stuff works. I need to work on my list of questions to ask them and go over it with DH in the car so we can try and make the rounds of as many hospital departments as we can while we're up there. It's hard to get people on the phone sometimes, but if you wander around aimlessly from one dept to the next in person, you can usually find someone who has the answer you need.

Ok, off to the shower. I'll probably think of something else while I'm up there, so I'll add it in as needed.

HAPPY BIRTHDAY PAULINE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Great green gobs of ....

Well, I'm relatively sure it's not greasy, grimey gopher guts, but it sure ain't any prettier.

I believe I can say with relative certainty that radiation, chemo and any other cancer related therapies will be postponed, because I'm relatively certain that I am certainly infected.
Or something like that.

Icky, goopy, green nastiness flecked with blood (from my throat, I'm positive, NOT my lungs) has made its grand appearance, telling me that this evil flu has progressed to the secondary infection stage, and is probablybronchitis.

I appreciate everyone's help in sharing their experiences with this kind of situation, but it's starting to look like there won't be a question about postponing treatment--if green infection goo comes, and the treatments might compromise your immune system.........................................................................................................................................................................................know what? I almost fell asleep right there. And Leno is a rerun. That means it's time to say goodnight. I give up. More when I am at least almost awake.

Help! Need info asap!!

Howdy all, I need your input & experiences asap.

I think most of you have known someone who's gone through chemo and/or radiation. I need information & anecdotes about anyone who has gone into chemo and/or radiation therapy WHILE having a monster cold, flu, or even infection such as bronchitis.

• Did they do it?
• Did they delay the start X days?
• What did the doctors say when they found out about the illness?

Despite goop, I do NOT have symptoms of bronchitis yet, at all, but I definitely have a MASSIVE cold-slash-flu that woke me up today with a fever of 103.2. This is obviously not good, since I have a meeting with the chemo dept tomorrow and am supposed to start radiation one week from today. No one else in my house yet shows a sign of catching it.

I'm going to be Googling, but I could really use some help from the wide world out there, just to have an idea what your friends and loved ones have experienced.

Thanks!!

Long time no post, again.

Let's see if I can master "short and sweet," or at least "short."

I am very, very sick. I started to lose my voice on Christmas. Thought it was just from talking too much. Still no voice, hurts even to whisper. I also have a big glob of goop living in my chest that likes to rise up in the morning, and a big glob in my head that likes to trickle down around the same time. Other times of the day, when I try desperately to cough and get some of this crap out of me, forget it. I can't move a thing from either head or chest, and the slightest attempt hurts like scraping my throat with broken glass. The goop in question is brown, not green and infect-y, so your guess is as good as mine.

In other news, the new diabetes med Andy gave me on Tuesday is not helping, at all. In fact, it's hurting in very, very major ways--I have almost every side effect listed on the labeling, including the passing out, dizziness, severe disorientation (to the level of not being able to tell if I'm dreaming or if it's real) and loss of vision. The labeling says "Blurry vision," but mine is worse than that. I can sort of see with my glasses on , but it's iffy.

The way things are going, I have a very strong suspicion that my appointment on Tuesday for "chemo education" at the cancer center is going to result in the center personnel cancelling my scheduled radiation & chemo start dates and putting it on hold until I don't seem quite so diseased and disfunctional. I am not happy about that idea, but that's what I fear will happen. Stay tuned on that one.

Otherwise, Christmas really was great. The kids had a great one, and so did I. I got waaaaaay too much and I love it all. Daddy and Chris came up to stay over, which was great--I had no idea Chris played piano now. He needs to come visit more often! Jason & Chrissy also brought the kids and I genuinely enjoyed having all of them here. Even though it was total chaos at times, I was really, really happy. Everyone helped me, and I didn't feel overwhelmed with what I had to do, even with the stupid radiation appointment. Christmas morning, Jason made a delicious breakfast!!! Yum, he can come cook over here more often. Our neighbors, Jamie & Jamie, came over for brunch, which made it even more fun. Dad got to meet some of the folks that we count on to have our backs up here.

And, in the middle of everything, our other neighbors, Gregg & Amy, were busy having a baby girl, so we were feeding their gorgeous labbie dog. Presley Rae made her entrance ON Christmas Day, so we're never going to forget her birthday!

The radiation appointment on Christmas Eve sucked, but I saw a bald eagle on the way up to Paradise. Go figure. Once I was there, I got to visit the linear accelerator, have one of my tattoos redone (it disappeared into my skin) and got to see how the lasers line up with the tattoos and stuff. Whatever...

I honestly have to stop writing this now, because my vision is going. I have to close one eye while wearing my glasses, and even then it's screwy. I'm slightly hungry and exceptionally tired and ready to pass out (again) so off I go. More when I can make more sense!

101 reasons not to get cancer...

Reason #1 is that I've now written 101 posts about having it. And it sucks. I'll think of 100 more later.

It sucks very much today. I had a nice visit with Andy, after an unfortunately long visit (12:00 appointment, got in around 1:45) and all kinds of new meds to experiment with. I knew my day wasn't going to be wonderful...I knew that after seeing Andy, I was going to be heading to WalMart for some final groceries and that it wouldn't be fun.

I didn't know that I would have to make 3 separate pharmacy stops to get my meds, including one in the wilds of Marysville, in the dark, across and almost under the Feather River bridge, in a place I'd never been even in the daytime. I also didn't know that a nurse at the cancer center would call and railroad me into having an appointment for some sort of radiation postitioning crap tomorrow afternoon while I'm supposed to be cooking. And I had to wrap things tonight and do other pre-holiday, pre-houseguest tasks.

But yes, you read that right, tomorrow afternoon, on Christmas Eve, I get to go to the radiation center. Don't even ask how she guilt trip steamroller pissed off railroaded me into giving up my holiday, after I flat out told her I was NOT giving up my holiday after letting cancer rule my life for the last 5 months, doing everything everyone had ever told me to do since finding out I had cancer.

It will probably be about 45 minutes worth of appointment, over 2 hours driving time, during the crucial cooking hours of 1:30 to maybe 5 pm, depending on lots of things.

My alarm is set for 7 am, so that I can get the three important things ready to go, pre-cooked, and able to just kind of be "tended" while I'm gone, so I can get home and hop right back into cooking mode.

And please, don't try to tell me that I don't have to do stuff, because I know exactly what everyone means, and I have simplified and pared down all the plans to the bone, including several changes on the fly in the grocery store. There are only 3 things that need to be cooked AT ALL for tomorrow, and then after that, I have other people doing everything. Those three things are it, and I can't cut it back any further unless I pull out a batch of frozen pizzas.

It's not about obligations, it's about that I planned something that was entirely within my capacity, and cancer has even managed to fuck that up. I want it to be Christmas! There will be turkey, there will be potatoes, and there will be carrots (sorry kids), and Lloyd and Anna will have to make sure they get cooked, somehow, because I can't do even that simple thing myself anymore.

Anna, who has helped me with everything, every single day during this holiday season, says it doesn't even feel like Christmas. I think she's just soaking up all of my bad vibes, and that's really not fair to her. Eleven is too young to have to be asked for help all the time, but she's the one who really helps...

Ok, I'm going to shut up now, before I lose the teeny, tiny, tenuous grip I still have on keeping things in control. It will all get done, food will be made, radiation crap will be done, much, much driving will be done, hopefully not in any snow, guests will come, and Santa will come, although I may have to be sound asleep long, long before he hits this part of the continent, not up talking and visiting with my guests like I want to be. Who knows.

There was *ONE* tiny nice thing about my day. The drive to Colusa and my high-speed birdwatching yielded 32 hawks (mostly Red Tails and Swainson's but 3 were little Kestrels, and several I think were Peregrines), 1 Golden Eagle, 1 Great Blue Heron, 1 White Tailed Kite (really close up!) and more egrets than I could count.
(Thanks mom.)

It's never *all* bad, of course. Today was just really close.

It's coming...whether I want it to or not...

"It came without ribbons! It came without tags!

It came without packages, boxes or bags!"

Yes Mr. Grinch, it comes whether you try and stop it or not, and in just a very short while, it will be here. For me, that means Christmas, of course, and following close on the heels of that momentous event, the chemo-radiation double feature.

{For Darcy, it means Barbies will invade her home, and once they have established a colony somewhere, they will multiply. She doesn't believe me...but that is another story, for another time.}

But anyway! I'm not in a good mood tonight. I'm in a very sarcastic, kind of pissed off, way too tired mood. It will improve, I'm sure, but right now I'm running on fumes, I think.

I was supposed to go to the oncologist this morning for my chemo consult, then to Andy in Colusa. Lloyd wasn't able to go with me for this one because Anna had an orthodontics appointment, and then his car battery decided to conk out. He had to head out early to get that dealt with, and I was just feeling like I'd been beat up, so I called and told the oncology office I'd have to reschedule. The nice lady said they'd get me in next week. Logically enough, cancer patients have bad days, and driving yourself isn't always possible.

So, I'm getting ready to leave for my appointment with Andy, and the chemo folks call. Can I be there at 2:30 or else have all of my radiation rescheduled?
HUH????
Apparently, nice lady forgot that doctor wasn't going to be in after today, until well after the first of the year. Oops.
I called Andy's office, and in a Christmas miracle, Lorrie answered the phone and was able to squeeze me in tomorrow, so that I could make it up to Paradise this afternoon after all.

Left with time on my hands all of a sudden, I make cookies. And realize how tired I am, which (wait for it....) leads to me spacing out and forgetting I'm supposed to be in Paradise by 2:30 or else have all my radiation rescheduled and it's 1:45. I can move fast when I need to. I can also make it to Paradise in 45 minutes if I need to, but I can't recommend it.

The chemo consult fairly well sucked, in that I learned that actual delivery of chemo medication is far more complicated than I might have imagined, and that on the day chemo is given each week, I can plan to be at the hospital for anywhere between 3 and 5 hours, and that doesn't count drive time each way. I can also count on masses of nausea, the potential for serious kidney damage and problems if I don't change my diabetes meds temporarily and I will likely experience an increase in the neuropathy pain I have, since neuropathy is one of the major side effects. I will need to be driven to the hospital on chemo day and probably the day afterwards, meaning Lloyd and I will both be out of the house for something like 6 hours.

We have an appointment next week for "chemo education" which sounds scary. Actual chemo and external radiation treatment starts January 5 if things go as planned, and will last around 5 weeks. There are apparently so many moving parts involved in getting all of this scheduled and arranged that it is too vast for me to comprehend.

I had managed to entirely forget about INTERNAL radiation until this evening. That will be a whole 'nother adventure. Let's just say that remembering didn't improve my mood any.

Meanwhile, back at the ranch, today was a total loss, as planned, BUT now tomorrow is pretty well going to be shot too by the time I do my visit at Andy's, hit the Super WalMart for final grocery supplies and get the last few presents [which I must do by myself] wrapped. THEN it will be Christmas Eve, because it will have come, no matter how hard I hoped and hoped that time would miraculously slow down so that I could sleep for a few days straight and still have time to make Merry.

I love Christmas, don't get me wrong, and I love all that comes with it, including the cookies and baking and wrapping and bows, visits from relatives and even the giddiness of operating on no sleep.

I'm just tired.
So very, very tired.

Somewhere around 73 hours until I have 364 shopping days left until Christmas.

Quick update

Well, there's not a lot to report, which is ok.

I had my "positioning simulation" visit thing up at the center. They made the vacuum bag leg-form, did a CT scan, and gave me three tiny dot tattoos.

The biggest of the three is about the size of three of those white snow globe dots to the left put together. I've decided that one is a tattooo of Who-ville. The other two, which are even smaller, are individual Whos.

It was a rather uneventful event overall, which is always good. That was Friday. I go back tomorrow for my chemo consultation with a visit out to see Andy afterwards. That will be a hell of a day driving, but it has to be done. Next up will be a simulation exercise to do further positioning (which I really don't understand...not sure what else they need to do) on the 2nd, and actual treatments starting the 5th for five weeks.

Until after the consult tomorrow, I have just as many questions as all the rest of y'all do, so still no approximate dates on head shaving.

Since the appointment, things have been pretty low-key, with a visit from Ken and Dad on Friday and some dog-sitting for my favorite gray babies across the street and the predictable holiday festivities like wrapping and baking and cooking. Anna is once again saving my butt on everything. I am very, very tired, but having a whole lot of trouble getting to sleep at night.

The next few days are going to be very difficult in both trying to get things done and in trying not to push myself too far. Tomorrow is a complete loss between the two doctor's appointments, but I'm trying to keep it all in perspective.

After all, once treatment starts, it's like back to "post-op" behavior, where resting is the primary activity of every day. Bleh...

Time to try and get some sleep in preparation. Let's all hope that the fog isn't too thick, or I'm going to be in trouble!! Snow and slush I can handle, but fog is a big problem...

Off to the dance...

Tonight is the Sycamore Middle School Holiday Dance. For once, my little one wanted to dress up and have her hair curled like a girly girl.

The results were predictably adorable.

She looks gorgeous...and much too old!! I gave her her Christmas dress early, for the occasion, and a hair clip I'd made years ago with tiny mylar gift bows on it. To finish the outfit, I glued another pair of tiny bows to some earring findings so she had the complete set.

I had originally planned to spend my day wrapping things, and then I decided I was going to goof off and play with yarn all day.

I probably would have got more rest and less work done if I'd gone with the wrapping!! As it was, I spent my entire day helping tidy up around the house for company tomorrow. I haven't touched a single piece of yarn all day long.

Somewhere in the middle of everything, I managed to finish rehabbing my nativity scene. Not bad for something Mom found at Kresges and I fixed up with leftover California mission pieces and quilt batting.

Much later...the dance and dance "look" were big successes. Other girls were jealous of her earrings. Yay.

Back up to Paradise tomorrow to get positioned and tattooed in the wet, snowy, icky weather. Well, I hope its snowy. I have chains, all weather tires, 4WD and good boots. Now all I need is a really good night's sleep and for my stomach to settle down. Let's all cross our fingers.
Night night.

No snow for me!

A bridge over snowy, icy water in the pretty healing garden....but no snow for me!

At least not today...the CT machine is being worked on today, and I didn't feel like doing it in two trips. I got up at the crack of dawn and drank a lot of coffee in preparation though. Urgh.

So, I suddenly have a free morning that I should spend on wrapping, since I'm losing my morning Friday to head up there.

I should.....but the little one is home after falling and hitting her head on the ice at school, lord help me, so I can't do her stuff anyway, and that's what I need to do most. I can "let" her wrap all the rest of it! She still thinks wrapping gifts is fun, so I'm taking full advantage of that, let me tell you.

But right now she just came out and showed me the big lump and bruise that's starting to show on her jaw. And there's swelling. Perhaps she will see a doctor at Kaiser this afternoon instead of just the vaccine clinic. If she bruises up any further in such a short time, I am going to [try to] insist on x-rays.

I suppose that all of this means I should goof off, rest (since I had about 4 hours sleep and am now highly caffeinated), look after my little bruised girl, look at chemo cap patterns and yarn online, knit..................right?! I know you all agree with me. If the little one is better later, she can wrap. :-)

If there are any of you out there who know anything about yarn, or know someone who knows something about yarn, I'd love to know if there are any good suggestions floating around out there for what makes a good chemo cap.

Chemo caps have to be softer than soft, no bumps or nubs or seams--you end up with the skin on your head being softer and more sensitive than a newborn, from what I hear and almost anything can be really irritating and chafe. Makes it interesting... I bought a super-soft polar fleece cap at Walmart, and a random lady there told me that even super-soft polar fleece will feel irritating at times because it will pick up pet hair that itches. This should be really interesting...

Anyway, I'm going to go goof off, so there will be no news from any appointments today. I think I posted that my chemo consult is Monday.

Oh! Here's a way I could use help-- If you can think of questions I should be asking either about the radiation or chemo, please send 'em on in. For example--I called in this morning to ask if I could wear tights or leggings while getting fitted for the positioning thing today. (That's how I found out about the CT being out) I'm already going to ask about wearing my MP3 player during radiation, what clothes to wear or not (like, should I not have metal fittings on pants), can I bring an eye pillow, stuff like that. I'm making a list for both radiation and chemo.

If you (Megan!!!) or anyone you know has gone through these, and you have suggestions for what I can ask, please speak up asap!! I'd really appreciate it.

This is almost like the period just pre-surgery again. I'm a nervous, anxious wreck.
Merry Christmas to all and to all a good Xanax.
Goofing off now.

Another day, another panic attack

See Lori, clothes don't always have to match......lol She looks adorable, regardless. Her fashion sense is entirely her own, and I usually don't intervene at all unless it's something like the idea of wearing more than ONE tie at a time. Then I gently suggest other ideas. She is a beautiful, helpful, VERY holiday-spirited elf.

I want to make very, very clear that I would not be getting through this Christmas season AT ALL--and it's gonna be close this year--without Anna's help. She deserves every gift she is getting and then some and I may take her out to her favorite restaurant as a special thanks after its all over. Wrapping especially would be lost without her, I'd be shoving things in gift bags on Xmas eve.

Today was a day. I slept too late, got far, far, far, far too little done and had another grand mal panic attack. And it was over the stupidest thing!

I've been working on coming to terms with the whole losing my hair deal, bit by bit. But tonight, I'm standing there, plucking stray eyebrows, when it hits me--I'll be losing my EYELASHES. Jesus Christ!!!!!!!!!!!! Mondo panic attacks. I think I've almost gotten past it, but it's taken me a full hour+ to get to "almost" and it's 1 am. I LOVE my eyelashes. They say your hair grows back curly and often better than before. I can hope.

What the hell...I don't have to get up for a whole 6 hours at this point.

Tomorrow is driving up to the Cancer Center (we'll just call it "the center" from this point on to save me some typing) for my funky positioning appointment.

It should be far less snowy, but still very slushy and mucky, so the 4WD will still be quite useful in the slanty parking lot.

<-------An elf at rest Even the happiest of elves get worn out and need breaks once in a while, huh? She'd been really, really busy, decorating the big tree almost single-handedly. Conner was working on "his" tree, as it has largely become, and Trevor had homework. We set up the artificial tree in the dining room and put up all the Hallmark collectible Lionel train ornaments, along with a growing collection of Harleys.

I was sort of helping, once in a while, in between utterly stupid little periods of trying to sit on my butt and do precisely nothing but knit some little gauge swatches for chemo hats.

Trevor, sadly shares none of these sprited desires.

I don't know why I bother. I think I stress myself out more by trying so hard to relax. I'm not capable of relaxing. I just pop up off the couch every 30 seconds to help someone with something or "just show her" or write something down before I forget it, or...........or............or............

But I am going to go to bed now. It's about time!

But, I leave you the pictue of the present that is driving Anna totally insane. Thank you Auntie Cheryl!!!!!









Ok.............nightnight for all.....................more later, I'm sure.

The sleep-typing has kicked in.

Treatment Update!

Well, today was a big day in terms of continuing cancer treatment fun. A very big day!

I finally went back up the mountain to Paradise, to the Cancer Center at Feather River Hospital. It's somewhat fitting, since this is where is I started this whole journey, heading up to Paradise to get myself enrolled in the BCCTP plan that is covering so much of this whole mess.

It's a gorgeous campus, with big trees, a "healing garden" and a gigantic fish tank in the lobby of the cancer center.


The healing garden was lovely in August. I'm not sure if it's even more beautiful now, covered in snow. Yes, boys and girls, I got to stomp around in the SNOW today!! I'm looking foward to going up there 5 days a week for 5 weeks.........ok, I'm NOT looking forward to doing it for so many trips, but I am looking forward to the drive for the first few drives, and I am really looking forward to the fact that it will be snowy for at least some of of the time. It's a good thing I have 4WD, huh?!

Ok, so now for the part I'm stalling over, because many of you are going to have very strong opinions about it.

Here is the gist, and I will follow with explanations:

• I am having external beam radiation treatments, 15 minutes per treatment, 5 days per week, for five consecutive weeks, starting on January 5. (If all goes as planned.)
• I will be having chemotherapy, a medication called cisplatin, one dose of 40 mgs per week, given concurrently with the radiation therapy.
• After external beam radiation is over, I will have internal brachytherapy, which (as I understand it so far, which is only a little) seems to involve a little plastic cylinder placed in the vaginal canal, and the radioactive "seeds" or rods are fed through some sort of tube up into the cylinder. Those are left in place for some period of time, which might be a hour, or might be two days, and I have no idea yet. That will be done down in Chico, and is an entirely different set of doctors at a different facility, so I'll learn more about that soon.

NOW, on to the thing everyone wants to know: WHY am I having chemo?

Ok...The doctor today, Dr. Barclay, who is the radiation oncologist, tried to explain it to me, and I will try to explain it to you all, but bear with me, because this is all new to me too!

First of all, it seems that I definitely didn't understand some things about how all of this works. For one, at this point, there isn't a question of X% vs. Y%. As I understand it now, by having the radiation therapy I decrease my recurrence rate from 15% to 10%--we knew that. What I didn't know before, was that (again, as I understand it now) at this point, when they do the radiation; when you make that choice to have the radiation and try and decrease that percentage, you have to do the chemo at the same time. It's a package deal.

The drug in question, cisplatin, is a relatively "mild" form of chemo--as chemo goes. Yes, there are still nasty side effects, and YES, I will be losing my hair. BUT, it apparently does what is referred to as potentiation of the radiation induced cell-killing.

Potentiation:

1. The ability of a substance to increase the toxic effect(s) of another compound.
2. an increase in activity or effectiveness; an interaction between drugs that results in a synergistic effect.
3. The action of a substance, at a dose that does not itself have an adverse action, in enhancing the harm done by another substance

Alrighty then. I had to look that one up. The cisplatin seems to have a biochemical effect on the cellular components that inhibits recovery of radiation-induced damage. Several studies I was checking out online show a dramatic increase in survival rates (30-50%) when post-surgical treatment includes cisplatin along with radiation.

So, to sort of restate it, as I understand things, there is very little point in doing the radiation if you don't do the cisplatin--the radiation doesn't give you enough of a benefit without the addition of the cisplatin to really bother with the whole mess in the first place.

Now comes the part where a lot of people email me or leave comments here asking me why in the world I'm willing to go through with the chemo for what might seem like a small increase in my odds.

There is no easy answer to that, and I'm not sure I can explain my reasons yet. I am working on that, and it may take me a little time to be able to articulate it, but I have said from day one that I will do whatever it takes to beat this evil little nastiness and so far, it seems like the right decision. All three of my doctors, Dr. Pisani (the surgical oncologist), Dr. Barclay (the radiation oncologist) and Dr. Mazj (the medical/chemo oncologist) are in agreement that this is what I need to do. And, Dr. Mazj is supposed to be "the" best chemo guy north of the Bay Area, and does not take new patients. However, Dr. Barclay walked upstairs and had a chat with him, and Mazj said to get me on his schedule immediately.

So that is where I am right now, this minute, at 9:08 pm. I have had a hellish day, with my stomach acting up very badly, to the point where when we arrived in Paradise, and the snow was falling, I was too busy barfing into a bucket to watch it. Yeah, one of those days.

On Wednesday morning, I am to be back at the center for a simulation and positioning appointment. This involves finding me a comfortable position, building some sort of Mythbuster-esque vacuum-formed mold of my legs and lower portions to hold me in precisely the right position for treatment, a CT scan, and of course, the positioning tattoos so that they know where to aim the beams.

I asked, the tattoos will be tiny dots, and they cannot do stars, hearts or tiny flowers. Bummer.

So, there will be more on all of this when I feel a hell of a lot better. All I want to do is sleep right now.

I have a LOT of reading to do on this course of treatment. They sent me home with a pile of goodies to read, and I want to do some more research online. I have a lot to learn, but I feel that I've made the right decision for me, although I realize some of you may disagree. You can certainly disagree, but you also have to respect my decision and where I'm at right now and disagree politely, please.

I have very little time to get my lots of reading done, and somehow have to get an entire family's worth of presents wrapped too. It's going to be a busy week....

Treatment starts the first week of January.

Costco, ho (and a tree)

(I wrote this Friday night and was so damned tired I went to sleep and forgot to actually post it)
Today's oh-so-exciting update is a very simple report that we ran errands.
Whoo-frickin'-hoo.

Lunch at Marie Callenders, a visit to the Verizon store to (once again) attempt to get my phone to behave properly, Costco for prescriptions, drug stock-ups (exciting things like ibuprofen and Benedryl), the final-final-final last couple of Christmas gifts, and a few groceries (eggs, butter, Kraft singles and Spam-breakfast of champions!), then Home Depot for a gorgeous "6-7 foot" Noble Fir, which is actually closer to a 7.5 to 8 foot Noble Fir, and a 2 foot Italian Stone Pine, growing in a pot. (My special little tree, since my husband loves me and it was only $16 bucks)

All I can say is, whew. I am TIRED. My neuropathy was neuropath-ing in something insane. I'm going to pay for this tomorrow!

Radiation Update!

Well, at least there is a little to report today.
Pat from the cancer center at Feather River called this morning, like I hoped she would, and I have an appointment Monday afternoon for my initial consultation with Dr. Barkley, the radiation oncologist. At that time, it will supposedly be determined if I need to have a meeting with the medical oncologist about chemo.

Maybe I'm just being optimistic, but it didn't *sound* from what she said that it was terribly likely that they were going to recommend chemo based on what they know about me now.

I am, however, supposed to bring in all my CT and x-ray films, and there is a possibility that they will do additional scans, possibly PET or MRI scans. I believe they use those to get the most precise positioning of the radiation. I guess we'll find out.

Speaking of positioning, I know that they do still use tattooing to mark you for positioning. Hmm....I wonder if the person doing the marking has any artistic talent at all... I mean, I'm not expecting something major, but it would be seriously cool if they could mark me with a tiny star or something instead of just a dot.

Hey, I'm always looking for a bright side here people.

Anyway, that's all I know right now, but it is good stuff, because it means I don't have much longer to wait before I get something going on again.

All I have to do now is get pictures of Charles Barkley in a lab coat out of my head....
Off to get my hair done. Relaxing frivolous feel-good fun time. :-)

Ho ho hos, I suppose!

Christmas is coming!

Yes, I took a break from being cancerous today (and even thinking about being cancerous) to start making Christmas come to our house.

We still don't have a tree; hell, we still don't have the house remantled enough to put a tree in it yet; but I was able to start working on the stuff that wasn't tree-related, and I got a lot done.

One of my main activities was making what I call "Mom's Tree" --or "Betty's Tree," or "Grandma B's Tree," depending on who I'm talking to at the moment!

I wanted to do this last year, and somehow didn't end up with the time. I had found all these little, tiny, cool old vintage miniature ornaments amongst Betty's Christmas goodies and had to find something appropriate to do with them. We had this little artificial tree that Lloyd used to keep on his desk at work during the holidays, and we never really knew what to do with it at home, so I saved all of the odd little pieces I came across, and it all kind of fell into place.

The ornaments were all very different--some needed wiring on, some needed hooks, being tied to the branches, you name it, but they were all beautifully preserved, just like everything else Mom saved.

I had to re-cover and weight the base of the tree, and "fluff" it quite a bit, but I think it looks pretty nice in the end. I'm pleased with it. It's going to take some effort to pack it up and make sure that the ornaments won't get damaged but I think it's worth it.

That's my "big" Christmas project for this season. For those of you who would know--if you look close, you might recognize things from your childhood. :-)

I hope everyone likes it as much as I do. I absolutely adore vintage holiday decorations (one of the very few things I actually collect, for all holidays) and the things of Betty's that we have here, to use now, and save for Anna later, are gorgeous. This was kind of my tribute to Mom, so she can be with us at Christmas through all of the beautiful things she saved.

My "smaller" Christmas project this season is a renovation of the nativity scene from my childhood. I *think* it was originially Grandma Voss's. It's the brown wooden one, with the whiteish plastic figures that like to come unglued from the mossy base all the time. Anyone? Anyone?

I'm planning to reglue all the figures securely and add more moss. I hit the bonus-jackpot when I found the glue gun. In the same box, I found some leftovers salvaged from California Mission-making. I've got some cool little fake plants in terra cotta pots, metal bells, a bunch of little white plastic doves, a tree and even a few orphaned padres holding baby jesus figures. I'm going to make use of some of that stuff and even put snow back on the roof of the stable. I think it had snow when I was a kid. I could be wrong. I would welcome suggestions from relatives who remember this thing!

*******************

And, speaking of suggestions from relatives (and friends), I'm very thankful for all the suggestions and experiences everyone is sharing with me in regard to chemo. It's not going to be an easy decision to make, no matter what, but everyone's input helps.

Your experiences with friends and relatives who have been in similar situations are invaluable to me, AND your observations of me, especially as I've been recovering from this surgery (and there are only a few of you who have actually seen me recovering) are even more important. I can't see myself like you do, and everyone sees a different side, or part of me. I tend to see some things as being far worse than you might, and other things as being far better. I know it's not easy to tell someone something negative about themself, but I need people to be utterly honest with me.

I plan to take everyone's contributions and compile them all into one document, so I can kind of distill it down, if that makes sense. I can then use that to make up my list of questions and concerns for the doctor(s) at my consultation appointments. I still don't know when those appointments are yet, but they should be getting set up any day now, so keep those suggestions coming, please!!!!!!!!!!!!

I would rather continue decorating anything in the house that doesn't have a pulse, but I will do my homework.

Today's update: Bella, the physician's assistant from Dr. Pisani, my surgical oncologist (figure I should start differentiating the types of oncologists), called me back. I had called her yesterday to try and clarify a couple of things. A) Does Dr. Pisani want me to have chemo now, as her comment had seemed to imply, and B) Who makes that decision or "final" recommendation? Him? The medical oncologist who I have not yet met?

Basically, what it comes down to is a team decision process. Dr. Pisani, the radiation oncologist, and the medical oncologist all make their recommendations, and hopefully, they all come to a consensus. *I* then have to take their recommendations along with my personal feelings, factor in all the side effects and consequences, risks and benefits, and make an informed consent.

And yeah, for those who don't know this, I am INTIMATELY familiar with legal Informed Consent documents. Intimately. Ha. Ha. Ha.

Now, if I meet with the medical oncologist, and he, along with the radiation oncologist, feel that chemo is warranted, Dr. Pisani has given me his recommendation for the type of medication, dosage, and infusion schedule, so that we can see if all three of them agree and/or find common ground. Pisani would recommend that I got the chemo one dose per week during the same time period I'm getting radiation.

However, I can defer chemo if I want--even if all the doctors said I really need it, and I decided to have it, I could wait a while. Radiation is another story, and Dr. Pisani is very clear on the fact that he wants me in radiation as fast as humanly possible.

I got the impression from Bella that now that Dr. Pisani has done the surgery, it is largely up to the medical oncologist to make the "final" recommendation on chemo after he has reviewed all of my records, surgery notes and pathology reports. It is not like being shuffled off once surgery is done, it's just that the medical onco guy is the chemo expert.

All of that said, I have my homework to do before I can make my informed consents to whatever treatments I do decide to consent to. Lots of homework! I want to make sure that I am also intimately familiar with the treatments and their consequences.

So now we wait. Hopefully not for too long... It would be great if Pat from Feather River would call me tomorrow morning and set up my consult appointments.

Bella is going to continue to be my primary contact at Pisani's office. I'm going to be checking in with her by phone once or twice a week throughout so that she can keep Dr. Pisani current as I go through these treatments all the way up here and so that she can expedite anything that I need from him, AND so I have someone I can bounce things off of, ask questions, etc. She's really great, and I feel much better having her available to me when I need someone.

WHEW! I think that's it. I'm very tired, and I'm veryveryveryvery tired of typing a blog entry. I think it's time to lay down and become very comatose.

Big questions--and I need YOUR input!!!

Story time!
This started out as a small update, and got bigger as I started writing. I really need your help on this one. All of you. If you read this, I would really appreciate it if you could please weigh in with an opinion.

Pat from the Feather River Hospital Cancer Center called me this morning. She let me know that Dr. Pisani's office sent over all of my records last night, and the radiation oncologist and radiation nurse were looking over it all today in preparation for scheduling my initial consultation.

Pat also asked me if Dr. Pisani had discussed medical oncology with me at all, aka chemo. I told her my story of how Pisani had said "no chemo" and his PA Bella had basically said that it was still an option being discussed.

Pat said that they were having their medical oncologist look over my file as well, and would like me to have a consultation with him in addition to the radiation group. *ulp*

Of course, I still have no idea if this means I'm likely to have chemo or not. My interpretation of Pat's remarks is that their people seem to think it might be a good idea. I told her the same thing I've told Pisani and everyone else--that if it's going to make a difference in whether I live or die in the immediate future, I will do it.

Frankly, I don't actually even understand WHO makes that decision. Does Dr. Pisani, as my surgeon, and the thus far the point person on my real treatment team make those decisions? Or, do the radiation oncologist and the medical oncologist make those decisions based on what they see when they review my files?

What concerns me the most is that before surgery, Pisani said this was "completely surgical," with no need for radiation or chemo. Now, it seems that has changed, obviously.

So now we reach another really important and really frightening questions: What are my criteria (for lack of a better word) for deciding if I'm going to do it or not, if the doctors recommend it?

After surgery, Dr. Pisani explained that I had about a 15% chance of the cancer recurring. He said that if I have radiation, that chance goes down to mabye 5%. Ok, no-brainer, I'll get the radiation.

SO, if the radiation takes me down to 5%, how many more percentage points does it take to say that chemo is a good idea? Is chemo worth it (with all its nasty side effects and such) if it takes my chance down to 4.5%? 4? 3? 2? If it gets me down to 1%, we're back at the no-brainer point, but above that I'm going to have a hard decision to make.

Very hard. Just having a discussion about it with Lloyd actually sent me up for the Xanax. Lloyd feels like if it were him, 5% is low enough for a chance. I really don't know what my threshold is. I mean, there are some hellish side effects.

Ultimately, the decision is going to be mine, but I am really interested in what my friends and family think. Lloyd says if it were him, he would say no to the chemo. He is also afraid my system would really not be able to recover from it.

What do YOU think?
Would you do it, if you were in this situation? My recurrance possibility percentage could drop anywhere from 0-5% if I have the chemo.

PLEASE voice your opinion, no matter what it is by leaving a comment or emailing me. I may even try to set up a poll on here, if I can figure out how that works. I can't stress enough how much I really need your input.

Now I think I really need a nap.
Thank you, everyone.

Pretty paint!!

The paint is done!!!!!!!!!!!!!!!!

I have tried about 20 times, or more, to fix the formatting in this post and I give up. I don't care anymore!!!!!!!!!!!!

And my doggie got cold, so a very silly little girl buried her in pillows.

Now for the new paint photos...

This is the "breakfast nook" part of the kitchen, which I use as the Mission Control of the household. We left the wall with the sliding glass door white, but now it's an ultra-white semi-gloss, instead of an eggshell/oyster-ish flat that gets marked up if you even look at it funny.

I did add one last minute creative touch though--I had him paint the moulding that outlines the sliding door in the same color as the "media niche" in the dining room. We never put any sort of window covering on it because of the way the moulding frames the door. I just couldn't figure a way to put something there that would look decent, AND I decided in the end that I liked the bright wash of light into the kitchen and had no need to cover it up. It's not like we walk around naked in the kitchen or something!

On to the dining room...the wall with the window is the same back wall as the sliding door. I have pumpkin walls now! I love the pumpkin walls with the white glossy fireplace and hearth. The niche is one shade darker than the walls, to kind of visually flatten the wall.

The living room is gray on 3 walls--the back, long side and short wall where the tv is. It's kind of a light-Eeyore color. It's a warm gray, soft and fluffy looking like a bunny, rather than brown-based and dingy looking. Very important distinction.

I've tried to get a close-up of the gray next to the white so you can see the actual color itself. Might show up, might not.

The colors of the couch, pillows, pictures, etc. really pop against the gray walls, and it the color doesn't make the room darker at all. I don't have the valences up yet, but I can't wait to see it.

Our bedroom is a light capri blue. It feels like being in the sky. I wanted something that was light and airy, cool and relaxing, without being cold.

I do have to get a new bedspread though. Ours is kind of trashed anyway, and now the greenish-blue spread looks kind of odd against the blue-blue walls.

Funny, I never dreamed I'd paint a room blue on purpose, much less my bedroom, but here we are.

There is still a lot of remantling to be done (for those who didn't get my silly joke-it's the opposite of dismantling) around here, but we're making good progress. We're doing some minor furniture re-arranging while we're at it, being creative and getting ready for Christmas decorations.

In other news, I am feeling pretty ok today. I am exhausted, without a doubt, but the meds seem to be working really well, and I made it through my day.
That's a pretty significant improvement. When I was an hour and a half late taking my pain meds this evening, my body let me know in a really big way. Overall, so far, so good.

The formatting of this post with all the photos is driving me slightly insane, so the rest of this will probably just be a long string of pictures. I'm waaaay too tired to care.

A visit with Doctor Andy The Great & Wonderful

There is much news to report...so, if you're inclined to read the whole post, grab a cup of whatever it is you like to drink (something warm, in my case!) and settle in, 'cause it's gonna be a long one today.

Yesterday's priority was a visit to Andy, my kind and wonderful internist out in Colusa.
Colusa is about 40 minutes from me, heading west on Gridley Road/Colusa Highway, which is a 2 lane, 35 mph gorgeous drive through rice fields, orchards, marshes & wildlife preserves which crosses the Sacramento river at least twice, big flood plains and a couple other smaller tributary rivers. The rice fields are flooded after the harvest, and ducks, geese, swans and other birds flock there (pun intended) this time of year by the millions (ducks) and hundreds & tens of thousands (geese & swans). It is an absolutely awe-inspiring sight.
Well, for me it's awe-inspiring, and for my neighbors who hunt, it's like fish in a barrel!!
Yesterday, there was a flock of snow geese not more than 100 feet off the side of the road. It was foggier than hell, so I had to drive really slowly and carefully, but I couldn't resist pulling off to try and get some photos.

Um, oops. The geese were not amused.

The middle section (about a third of them) took off, making more noise than you've ever heard in your life. I got a few photos, but they just don't do it justice!!


So ANYway, I went to see Andy after talking to the physician's assistant, Bella, at the oncologist's office. I explained all the pain I was having, the swelling, and all the other symptoms so that she could have a conversation with Dr. Pisani and he could call me back. She told me what to watch for, symptom-wise, that could indicate I was having trouble with DVT and might be throwing a blood clot--as in, proceed directly to the emergency room, do not pass Go, do not collect $200 kind of symptoms. Luckily, I have had none of those.

Bella also told me that, given the types and amount of pain I'm having and the length of time since surgery, it sounded like it was time to get Andy involved to put me on a formal pain management program. Basically, it means that he, and only he, is the captain of the narcotic ship! Andy actually specializes in pain management and chronic pain syndromes, which is cosmically funny, because I discovered this guy by complete accident, looking through yellow pages on the internet. It's like the guy was custom-made for me.

So, I called Andy, he had me come in right away, and we started deciphering all of my mess. Andy's diagnosis is that I do have lymphedema, but it's not actually all that bad. The swelling is minor, but waxes and wanes through the day, which is a good sign. That means it's still variable based on activity levels and stuff, not heading toward permanent disfigurement.

[Trivia for the day: I never knew that elephantiasis, that disease teenage boys like to make jokes about, is actually the most advanced, worst form of lymphedema.]

However, Andy also figured out that the lymphedema is not the cause of the pain. The pain is actually mondo neuropathy. Neuropathy translates to nerve pain, literally, so the term sounds like kind of a catch-all, but it's actually very specific in my case. Most diabetics have trouble with peripheral neuropathy (meaning any nerves which are not in the brain or spinal cord proper), especially with their feet. I am having some of that, but my main problem is in that upper thigh, hip, pubic and genital region.

Andy says that my problem is severe neuropathy of the ilioinguinal nerve.
[Wiki says: The ilioinguinal nerve, smaller than the iliohypogastric nerve, arises with it from the first lumbar nerve.
In the female ("anterior labial nerve"): to the skin covering the mons pubis and labium majus. ]

So, this booger of a nerve starts in the lumbar vertebrae (L1 specifically), and travels down into that upper part of the thigh, across the pubic mound, and finally ends in the labia. These would be, of course, the major areas where I have excruciating pain when I say, lean against the counter to brush my teeth or something. It also has parts that affect the inside of the vaginal canal and other fun stuff.

Now, the big pile of lymph nodes that I had removed in the surgery were the inguinal nodes located in the pelvic area. Ever since day one after surgery, I've had weird nerve issues in that upper part of my thigh, including totally "dead" patches, to where I was joking that I should hurry up and go get a tattoo there while I couldn't feel anything.

See the "Ah Ha!" moment coming here?

Andy says it is not even slightly uncommon for the ilioinguinal nerve to get nicked during this surgery, and suspects that is what happened. So now, the nerve is pissed as hell, and the lymphedema is making it even madder, causing me insane amounts of pain.

The good news is, knowing what it is allows us to attack it and treat it aggressively so that I can feel better. The bad news is that it's not going away any time soon. The nerve damage could heal itself. Or it could not. There's no way to know. Neuropathy like this is (yup, you guessed it) completely normal after surgery.

Lymphedema is not curable at all. Once you get it, the best you can do is try to first reduce the acute problem with gentle movement and exercise, lymphatic drainage massage, compression stockings and even diet. After it's at a normal, manageable level, it becomes more of an annoyance than anything horrible. And, apparently, lymphedema doesn't cause pain, so that's the neuropathy at work.

Now, did Dr. Pisani finally call while I was out of the house for the first time in a full week? Of COURSE, Dr. Pisani called while I was out. Duh.

Luckily, I'd left Lloyd a cheat-sheet with the things I was needing to talk to Pisani about. Dr. Pisani had been operating under the impression that someone had told me how to get started on radiation already. Nope! He also mentioned that while it sounded like I had some lymphedema, lymphedema doesn't cause pain, so that couldn't be the acute problem, and was glad that I was seeing Andy for figuring out the pain stuff. I hadn't written down anything about the possibility of chemo on the list I left for Lloyd, so of course he didn't ask, so I still don't know about that.

So where does this leave us?
With the information from Pisani, Andy and my internet research, here's what I know at this point, in no particular order.

• Radiation will be at Feather River Hospital's cancer center, up in Paradise. That's about 45 minutes from us, up at the base of the mountains, just below the snow line. Paradise and the hospital luckily didn't burn down this summer, but it was close. They have a gorgeous cancer center under the pine trees with giant aquariums and a meditation garden with a stream. I still don't know when I start or for how long I have to go, but I do know that I shouldn't need anyone to drive me, or be massively incapacitated afterwards. Supposedly, you don't feel, see or hear anything and it's just like getting an x-ray. After successive treatments, you can start to feel icky afterwards, but that is mainly in the form of fatigue and maybe nausea and general *bleh*. I am to call them on Monday and get things sorted out out as to when I start and how many treatments and all that. Details will, of course, follow here as soon as I have something to report.
• Formal pain management has begun. Andy is a saint. We discussed all of my specific pains in great detail, in a very long conversation that involved things like kappa receptors, gaba-agonists, and anxiolytic medicines. Yeah...I had to look all of those things up too, but it's totally unimportant right now, so don't worry about it. Basically, we made a new drug cocktail. Andy has upped my Zoloft, which raises my serotonin levels and relieves most of my anxiety. He's also given me a small supply of very low-dose Xanax for those acute anxiety attacks that I still get once in a while. I am now taking a new med, neurontin at night, which is a type of painkiller that I believe is aimed specifically at nerves and neuropathy. That's a long acting one, so I only take it once a day at bedtime when I want to be sleepy anyway. During the day, I am taking a low dose of a very strong opioid which seems to actually attack the pain very, very effectively. I can safely increase the dose as much as 3X if I'm not getting enough relief. As a gastric bypass patient, other delivery methods, such as liquids and patches are much more effective in their absorption rates than swallowing pills, but of course none of those routes are available to me. Andy would give them to me, sure, but I'm so allergic to adhesive that when I was trying to quit smoking, my torso became a checkerboard of puffed-up red itchy, hot, scratchy, painful square welts. No patches! And the liquids make me gag. Pills it is!
• Another major concern is my immune system. It's never been good, and that's putting it mildly, and it's pretty much useless. This is not a good thing, because radiation will weaken it even more,and god help me if I had to have chemo, so Andy wants me to put immunity-boosting at the top of my already crowded to-do list. He's got me on a big 'ol pile of supplements, including B complex, E, fish oil, l-carnatine, glucosamine, and of course masses of C. Antioxidents are a major, major deal right now, to try and build me up a little bit before my system takes another hit.
• I am exceptionally anemic, again/still/forever. I try, I really do! Yes, I forget to take my iron at least half the time, but I have to alternate my iron pills with stool softeners or I will never poop. Ever.
• My diabetes is not controlled anywhere near tightly enough right now, and I need to take steps to rectify that, immediately. Like not sitting here and eating homemade toffee while typing. Yeahhhhh........ That's not something I usually do--I'm a pretty good eater, but I need to get back on track. My main problem is that a very large part of the time I don't want to eat at all, and then my insulin levels fluctuate wildly and I'm suddenly forced to eat to get my sugar level up FAST, so I grab whatever sugary ick is closest and basically perpetuate the problem.
• And then there's my oral health...or, shall we say, lack therof. Many of you know about the abscess and cracking problems I've had over the last few years. Now, I'm having a ton of other problems, especially with my gums and enamel, and Andy says that it's all connected. The cancer, the loss of lymph nodes, the meds I'm on--they all contribute to gum disease and xerostomia, which is a medical case of dry mouth. By that I mean not just "oh, my mouth is dry," but an actual decrease in saliva production and decrease in my mouth's ability to fight off the bacteria that cause major gum problems, which makes a nice tidy feedback loop, since oral health problems lead to a decrease in overall health. Vicious circle anyone? Getting my teeth fixed (the ones not already cracked and falling out of my head) is unfortunately low on our financial priority list because it's going to take so damned much money to fix them. However, in an attempt to do something about them, Andy steered me toward a sort of fake-spit spray for my mouth that helps kill the bacteria, and I found matching toothpaste which is supposed to do something. Other stuff. (Sorry, I've been working on this since this morning and I'm starting to forget things!!) Oh, and I got a new electric toothbrush.
• Anyone ready for some good news? My HDL cholesterol is 84 and my LDL is 92, and my coronary risk factor score is 2.3, which I've been told is excellent. Yay for my cholesterol!
• And finally, we must address what's inside my head. Not the physical stuff inside my head. That's all fine, I hope. The mental-emotional stuff is harsh. I am still the queen of guilt. I get anxiety attacks sometimes still. Not as bad as the ones I had before I even knew what stage my cancer was at, but attacks nonetheless. Perhaps worst of all, I've lost that yogic thinking I spent so long cultivating. Before and right after surgery I was great with using my guided-imagery visualization exercises, yoga asanas (poses), and pranayama (breathing) practice to work on my healing process. Now..........I just can't get myself into that mind-space and the effect it's having on my physical well-being and healing is pronounced. I need to start going to yoga classes on a regular basis, immediately for both the physical exercise (which would also be quite helpful) and the mental clarity and concentration it gives me. The guilt-based depression makes me want to just lay in bed all day and be sick and tired of being sick and tired. Let's not even think what would happen if I have to have chemo and haven't gotten myself back there yet. Andy and I talked a lot about that, and he offered some suggestions and opinions--you can probably guess what those were. Quit being guilty about the time, money and care everyone has to spend on me, quit pushing myself so hard to do things that I shouldn't be pushing myself to do, put myself and my healing first at a majority of times. I have to allow myself to realize that my actual "recovery" process hasn't even started yet. Wow...wasn't *that* a revelation!! Here I am, mentally berating myself for not doing well enough, not healing fast enough, having complications and generally being a pain in the ass, and Andy made me realize that the recovery portion of this long, strange trip doesn't start for real until after all the adjuvent therapies have finished, because they leave collateral damage in their wakes.

Monday, I call the cancer center, and I call Bella to find out if there really is a chance of chemo, and if I'm going to have chemo, I'm dying my hair red and green stripes for Christmas. Very red and green.

I think I've covered all the bases...there were a lot of them to cover. I'm exhausted, no shock there, but I've finally finished this post so that everyone knows what is going on, and my house is painted and it is gorgeous. I'll be taking photos after we get all the furniture back in place.

Now it's time to head off to bed, if we decide to sleep in the bed. We'd have to put sheets and bedding on it, which we'll have to take off again in the morning to move it back into place. We might just play camp-out on the couch. Time to try and relax myself. No small task...I feel like I forgot things, but I have no idea what they are, so I'll post more later if I think of something.

Thanks to everyone for caring enough to want to read this. I really do appreciate all of you.

How today sucks, let me count the ways...

Let's see...for one, my house is of course still turned inside out and being painted. The only difference is that now it's stinky with paint fumes, and we have to closely monitor the comings and goings of the dogs and cats so that we don't have any tails or other body parts dragging through wet paint. Said painting will now, in theory, take 4 days instead of the originally estimated 3. I won't be shocked if it takes 5. Three days to paint that much surface area seemed way too quick to me in the first place.


And, drumroll, I'm in pain. Weird, terrible pain that is almost impossible to fully alleviate. If you combine a severe, acute stabbing-searing pain with the feeling of starting to hurt while novacain wears off and you're all tingly at the same time and an irresistable desire to try and shake out the pain, like when your foot goes to sleep, you almost have it.

Thanks to Dawn, I at least have an idea of what it might be now--lymphadema in my left thigh, pubic and genital area. It HURTS. They don't let me have any bigger letters than that on here. Unfortunately.

Before you say it, don't worry, doctors have been called. I've been confined to the house all week, waiting for my oncologist to call me, afraid to even go to the mailbox and miss his call...but I ran out of patience for waiting today and called them. I've left a message with the medical assistant, for my doctor, the other doctor, or the physician's assistant, whoever gets to me first, to call, call, call.

I'm more than a little scared after learning that all of my symptoms and strange things going on match symptoms of fun things like lymphedema and cellulitis, which is an actual infection under the skin thanks to the lymphedema. I'd like to find out that I do not have these things, please.

We shall see.

I'd really rather be spending my day doing things like decorating a Christmas tree, but we can't even get one until we put the house back together, and have room in the garage to get the decorations down. I suspect this is going to be a very, very short holiday season for us around here this year.

If not for the kids, I wouldn't even get a tree this year, since getting everything down and doing all the work to decorate it hardly seems worth it for such a short little bit of time to have it up...and just the fact that *I* said that (the woman who puts 2000 lights on a 7 ft tree) should tell you something about how I feel this year.