Sometimes it leaks through the cracks

Dearly beloved,

The following is just a kvetch and rant - I don't need you to do anything, I just need to get it out of my system.

I am tired, cross, and hating cancer and treatment, and everything that goes with it. If anything, for me, dealing with being on a steroid is at least as awful as being on chemotherapy, and it's looking like three more months of the steroid...and if this CT scan doesn't go so well tomorrow, I get to restart chemotherapy also.

The last two weeks have really sucked beyound belief. I had a seizure...I can't drive for three months. It took almost two weeks for them to get my e-mail going at work, so I'm behind just a little bit. We're trying to move in, paying bills, getting Tess going in 7th grade...and I feel like I'm gritting my teeth with exhaustion and rage every moment.

Last week I came down with a cold. The house is in chaos. Getting a cold is usually my body's way of saying, "Tougho lucko, kid, You are in bed for three days, and all that emotional baggage that you haven't been dealing with? HERE IT IS." Sooo, just for fun, on top of everything else, I was up a lot of the night, and what I mostly want to do is cry and kick things. Rage and grief, oh GOODY my two MOST favorite emotional states. (Sarchasm, and I do mean CHASM). I need some walnuts to crush, bottles to break, and large, dangerous firearms to discharge in a safe and remote environment. Anyone have a recommendation about dispelling anger in a way that doesn't slop it onto other people? Anyone got something they want blown up?

The steroid is rough because it causes emotional and mood side effects ALL of which I dislike in myself. Hypes me up. Makes it harder for me to listen. Puffs up my face which I KNOW sounds totally trivial, but in this strange way, its not, because it's a constant reminder, everytime I look in the mirror. Hullo, hyper cancer face! How are you? Bloating, weird appetite, irritability....I know part of the irritability is fromn the steroid - but I'm not sure that knowledge makes it any easier to manage, emotionally.

Not to mention the insomnia from hell. I average four hours of sleep at a time. Friday I slept for seven, and that's the first time I remember sleeping for seven consecutive hours since...probably mid-june, when I went on the steroid? At matinenda I was typically getting four at a stretch. So add constant sleep deprivation to the rest of the list.

I feel like I can cope with most physical side effects, but the mood and emotional stuff is a bit much. Stay the hell out of my PSYCHE, you drugs!

I cope and I cope and I cope. And right now I really wish I didn't have to. I know if I have to start chemo I'll manage. Waiting to find out is hateful.

I should know by the end of this week what the regimen is, and there's a chance that chemotherapy combined with the steroid will be slightly easier than either alone. ( I know, I know, unlikely - and if you know for sure, don't tell me. Idle hope is the last refuge of...)

But the layers get thick. Not the treatment itself, but the ripples out from it. I can't drive for a while - suddenly I have to find car pools, Tess has no pickup from ballet, any errand I have to do either on foot or bike...blah blah blah.



I just got eyebrows. I really don't care about hair, but I love having eyebrows.



I don't need any of you to do anything about this.

I just needed to vent, and have you nod, and either say we understand, or we don't really understand, because we aren't in your shoes, but it's okay for you to tell us this, to let us see the rage and grief, as well as the courage and tomfoolery.

The other thing is next time we bump into each other, if it's just the two of us, ask me if I need a half an hour to vent. I tend to mostly keep this state to myself with more than one person around, so from my end it requires a quiet cup of tea, not a party. And while I'm at it, if you don't know me personally, ask someone around you, who is dealing with chronic disease, if they need to vent. You might be surprised by what you learn.

Moving right along...

So after a weekend of pack and schlep, The house looks to be about 70 or 80% emptier. I'm taking today off, since it was a brutal two days, and that included chemo on Friday morning. Yesterday I was a staggering zombie. Luckily we had three other friends show up, and they helped wertperch while I slept in a lawn chair and drooled on the towel I was using as a pillow. Now I'm feeling slightly more human again. Turns out I can still totally redline past my fatigue, but it has gnarly side effects.

We had a great group of friends show up on Saturday morning. They were all fabulous packers and helpers. Several said they might be able to come early Thursday, because of early release, but homework obviously takes precedence. We have all week, so if anyone wants to earn an hours' worth of extra $$$, they can drop by any afternoon, Tuesday-Thursday, to load up the second POD. The PODs are a brilliant moving and storage idea, and if we continue to be this mobile a society, I'm going to buy two. One as my permanent closet, and the other as my permanent art studio. Then we never have to pack or box the $%#^%$#^%& again.

Friday morning we shift gears, and I have to fast and head down for a PET scan. It's feeling pretty loaded - If I have to, I will roll with it, and get three more rounds of chemo. I just REALLY don't want the scan to find anything new. That would bum me out. If that happens, I take a break, and start a new type of chemo when I get back from my trip, yuck-o.

Still, the packing has gone amazingly smoothly, and we expect to be out on time, with a relatively clean house. Yesterday's volunteers repaired a couple of small dings where doors had banged on walls, and one towel rack that had been badly installed. And having a lot of stuff out of the house has given us more breathing room. It's sort of AIRY. Huge blessings on Sumati, without whose stellar organizing skills we would still be buried under frightening mounds of STUFF.

Love to all,
grundoon

Grundoon Goes GammaGirl

My favorite moment was when the 350 pound lead bowl, attached to the titanium frame which is screwed into my poor little skull - don't drop my head, please! - (COLANDER? I SPIT ON YOUR TIN FOIL COLANDER!) "DOCKS" with the gamma knife machine. "Houston, the shuttle has docked, and the air locks are connected!" And ALL FIVE of the geek doctors came out dancing to Light My Fire, courtesy of the Gammagirl CD Kevin made.

Twenty-three things to do on steroids

This is your grundoon. This is your grundoon ON DRUGS. I'm on a steroid to prevent any swelling in my brain pan from the [gamma knife] surgery. Steroids tend to make me slightly wired. Slightly.

Many bothans have died to bring you this information.

1) Alphabetize your CD collection. (2:30 am)

2) Paint your toe shoes with cobalt blue watercolors. (1:30 am)

3) Fold laundry load dishwasher forget what you were doing fold more laundry leave in pile on end of bed so it gets kicked and unfolded. Never put away.

4) Give wertperch all your credit cards and checkbook, so you do not spend money, because you are effectively hypomanic, and you need the money to close on the house.

5) Do not spend money. I tell you three times.

6) Start an ENORMOUS oil painting of yourself from the first cleavage calendar. Get scared of creepy stare-y blue-green eyeballs in self portrait.

7) DO NOT SPEND MORE MONEY.

8) Find Pogo books at comic book store, and ask wertperch to please please PLEASE let you buy them. Gloat to pogophile friend. Consider selling all Heinlein pulps on Ebay. Wish for a copy of grampa's comics, which would solve all the loan complications.

9) Read the paperwork for the house. Realize favorite clause is the warning that living in a development with a golf course on the north end (Yeah, are we yuppie, or what?) is the warning about ERRANT GOLF BALLS all caps, in bold. HOW DUMB WOULD YOU HAVE TO BE NOT TO KNOW THIS?

10) Drink heavily. Booze offsets the effects of the steroids. Ask doctor(s) if there's a problem with drinking gingerale and vodka, with candied ginger, starting at, oh, say, 10:30 in the morning. Docs say, for three weeks, if you are controlling the hypomania, then yes, just don't take benzos at the same time. Consider this as good advice. Celebrate by DRINKING. Thank you, Jethro Bodine. Toss me a PBR.

11) Sort more CDs. Fold clothes. Consider alphabetizing the books. Try to resist. Start cleaning up the backyard, find an old pot full of glorious orange Oregon dirt. Dye everything white in the house orange with Oregon iron oxide. Find that wertperch wants to kill you, even though you've dyed his boring white tee shirts. You talk too much.

12) Aphabetize the books, and start boxing up the ones you don't want. Anyone want any books? If you pay the shipping, I send to you.

13) Cook strange things at midnight. Have stomachache the next day. Drink all the booze in the house, which isn't much, except for wertperch's exotic beer stash.

14) Take hydrocodone on an empty stomach. Hurl. Eat cheerios. Hurl. Visit new house, and christen it by hurling in the master bath. Consider peeing on the corners, it would show about the same amount of class.

15) Try not to kill wertperch, or cause wertperch to kill you.

16) Try to resist the temptation to chase bad drivers down the street, and go generally postal. Go to the grocery store with cancer survivor across the street (GliomaGirl), using stroller to haul booze. Don't take babies. Realize that both of you have the attention span of a gnat, and cannot have anything remotely resembling a normal conversation. Have fun anyway. Notice the tellers looking extremely disturbed about the six large bottles of booze that you are putting where the baby's butt would be. Get the giggles. Talk loudly about cancer survival, complete with head wounds. Realize that we probably do not project the image of responsible moms. Make garbled fuckfuck noises. Drink, not so heavily, upon returning home.

17) Spend many, many minutes on phones with LARGE BUREAUCRACIES, medical, and bankinal, realestatinal.. Try to decide which to hate the most.

18) 3:00 am - surf furniture stores. Do not steal credit cards back from wertperch. Consider freezing cash card into a block of ice.

19) Look for cocktail dresses actually named after cocktails. DO NOT BUY THE COCKTAIL DRESSES. Realize menfolk of family have better taste, and furthermore look better in cocktail dresses than grundoon does, and have found cooler dresses. Wonder if menfolk are all really gay. Think it unlikely.

20) Shop for large caliber handguns and chainsaws.

21) Write really complicated emotional stuff, and decide NOT to post all of it. Lose battle. Post it anyway. Cry all day, and have nightmares. Take extra-strong sleeping medication, and still sleep for only four hours.

23) Search for cobalt blue suede boots and chaps for GammaGirl superheroine costume. Find them in England, on Ebay. DO NOT BUY THE CHAPS. Decide to wait until AFTER the house closes. Wear gammagirl wig and tiara to POOlates class.

23) Dance ballet class, on pointe, for 2-1/2 hours. Still get so wired that you consider going to the ER for help, after talking to all medical offices for more than 20 minutes, and still not getting answers. Try not to kill wertperch. Go out for a beer, drink mai tais, and find out it's salsa night at the Grad. Call the ballet dancer who might be available. Go and salsa for two more hours. Get happy. Dance with sweaty boys, and do the ballet/hiphop/salsa with Maia. Consider the merits running away to Morocco to become exotic dancers. Drink more mai tais. Find out that next day thighs will hurt, a LOT, and it's still worth it, because you haven't gone postal. Lather, rinse and repeat. Do not fold, spindle or mutilate.

----that is all----

Ten down, five to go

I visited my oncologist on Monday, and it's all good news.

The CT scan turned out really well - all 7 lymph nodes have shrunk, and are either undetectable, or "normal", which means smaller than 1 cm. An "optimal" response, according to my doc. The chemotherapy is working very well. After a discussion with my doctor, we've decided to tack on an extra three sessions of chemo after the next two, which mean instead of having two more, I have five more, taking me to March 6.

There's a small hope that the extra chemo will knock the cancer out completely (about 10%, if you like statistics), so I'm trading off feeling like shit now for the hope that it goes away, or I go into remission for longer. I'm shooting for the long tail here, people, the end of the bell curve that either manages to get cured, or lives for a reeeaally long time. 20 or more years.

Fact is, I fall into a little bit of a statistical crack - somewhere between a regional recurrence and a metastatic recurrence. Regional would be confined to the axial lymph nodes, or in the area of the first surgery. A true metastatic recurrence would have shown up in another organ. The further I drill down into the statistics, the less they seem to apply to me. So, truth is, there's no way to predict how I'm going to do. Now, they treat me as if it's metastatic disease, just because I've already used up some treatment options - can't do any more radiation to that are, can't do hormone therapy. But I've dug around, and have found very few discussions of a recurrence like mine. So I think I'll just plan on being an exception to the statistics.

Spirits are good, I think Kevin is more worn down than I am. If you are local, take him out for a beer or a hike.

Love to all,
grundy

Chemotherapy

So what's chemo really like, you ask? Well, dearly beloved, let me tell you at least of my own experience.

Kevin and I usually arrive around 9:30 am, although this is going to change. What I'm describing is a fairly typical regimen for breast cancer, although there are LOTS of different protocols, and other types of cancer have their own.

The first bit, which yesterday didn't go as smoothly as I'd hoped, is to access a vein. I had a port-a-cath installed a week ago, which is a little subdermal gizmo with a rubber top, that's attached to a tube running into my vena cava. That means generally they can get a blood sample for labs, and give me chemo and the associated drugs, through the port, rather than using a needle in my arm. I dislike getting poked with needles in the arm every single week, and I generally find an IV uncomfortable even though they are supposed to be painless, so I like having a port.

Alas, this week it was not to be. They tried to access the port, but since the surgery is only a week old, there's still some swelling, so they couldn't hit it. Three tries, and the nurses gave up. They don't like poking around any more than necessary. So the old IV it was. Always in my left arm, and I tell you, I'm running out of veins.

Then they give a passle of pre-meds, which decrease the risk and the discomfort of chemo. Notice I said decrease, not eliminiate.

Mine looks like this - tagamet, to decrease stomach acid. I sometimes ask for that first, since it's common to arrive with an upset stomach. Benadryl, to prevent a major allergic reaction - anaphalaxia - to the chemo drug or drugs. Dexamethazone, a steroid, also to prevent an allergic reaction, and to make the chemo more effective. Ativan, an anti-anxiety drug, both to offset a manic reaction to the dexametnazone, and also anti-nausera - most tranquilizers are also secondarily anto-nausea drugs.

These take about two hours - I try to eat lunch before the atavan and benadryl hit - in other words, when the room starts spinning. Yesterday it was a shrimp burrito, and it was heaven.

Then they start the taxol. First off, many chemo drugs are caustic, so the nurses don extra-heavy duty protective clothing. Imagine a hazmat outfit, but printed in happy happy pinks and blues, face mask with an eye shield, and heavy duty, elbow length rubber gloves. I want to steal one of these for next years' halloween costume.

The taxol takes 90 minutes, and generally I sleep through most of it. One of the nastier side effects of taxol is that it seems to have weird emotional side effects - I almost always cry about 30 minutes into it, and I'm typically weepy for about two to three days after, until it's back out of my bloodstream. Hard on my soul, and hard on the people taking care of me.

On this regimen, the next thing is Avastin. This is not a traditional chemo drug (poison - kills all fast dividing cells), but an antiangiogenic. Cancer cells, in order to become tumors, have to fool your body into believing that they are normal cells, and to grow a new blood supply. Avastin prevents new capillaries from forming, so new tumors get starved. Very nifty trick, that.

First time I had it, it took 90 minutes. This time they went to 60 minutes, next time I can go to 30, if i don't have a bad reaction. Again, generally sleep through it, but I have movies and books on CD just in case.

All told, takes around six hours. Then they unplug me, and I stagger home in a fog of drugs. One of these tends to wire me up, so I don't always sleep well the night after the chemo. Also makes me feel really hot and flushed - I look very pink and healthy, ironically.

It seems to take about three days to wash back out of my system. The second day after is usually the worst - energy level is lowest, nausea is highest. I've never ACTUALLY hurled from chemo, I take a VERY expensive anti-nausea drug called Zofran, but in some ways feeling like you are going to hul but never actually doing it is almost worse. At least when you have flu, and you DO hurl, you feel better for a little while after. This just goes on continuously. Bleagh.

Day four, Tuesday, so far I have felt miraculously better. Not 100%, but far better than the day before. I get two more good days, then back to the grind.