Well, that was fucking depressing. The Life and Times of ovarian cancer's most famous victim—Gilda Radner. Of course it was on TV and of course I had to watch it, just to remind myself how utterly desperate the situation is.
Sometimes it's hard to remember I'm sick and possibly dying. Like last week, I felt great. I had things to worry about other than me, and my hair hadn't fallen out, so it was easy to forget all that. Now, I look in the mirror, and its there for all the world to see, shrieking out 'cancer!'. It's humbling for certain. Who knows, maybe this is gods' wrath for hubris?
However, the one thing that I think separates me from her, is I truly am not a fatalistic person most of the time. I let myself wallow in it every now and then, but it's a state of mind I generally don't inhabit. And the one thing I do have in common with her is, I do have a sense of humor, and with that comes perspective. I can laugh about becoming bald, because frankly its not that big a deal. In the immortal words of the Red Alien from the 8th Dimension "so what, big deal." It does worry me though, that so far all the role models for cancer that I have in my head so far were not survivors.
I had an interesting conversation with an old friend about 2 months ago. He is a student of human nature, and one of his 'studies' is what does it take to make a survivor? A person that is successful in life, that despite adversity overcomes the obstacles. One thing he noticed is that survivors rarely come in pairs; usually they end up being attached to non-survivors or more frequently as singles. Not that this was a very scientific study, but R deemed me a survivor before I was diagnosed, and I intend to take him seriously. Though I think that Fate has stepped into my life. What if the dot com failures hadn't killed the job market before I graduated? What if 9/11 hadn't happened and the whole world hadn't gone crazy, making me stick to the job just a little tighter? What if Scott hadn't passed on, leaving a place for me to go without losing my benefits? I have insurance that is going to make it possible for me to live, I have a job in my new field, and I have an incredible group of people to work with, and the most precious of all, friends and family who care and love me. I am more than thrice blessed: I cannot believe how lucky I really am.
I did get some very very good news today. The CA125 is a test that is given for cancer; it detects the byproducts of tumors in the bloodstream. On March 28th my CA125 level was 2713, on
April 5 its was 3514 (from the biopsy, so the higher level). But, on Saturday, after one chemo only, it had dropped to 301. That's three-oh-one. It was so astounding to the nurse that she called to tell me. So, the drugs are working, the drugs are working.
So, I'm in tears again today, but it's just tears of joy and thankfulness.
Thursday was bad. I had counted on my appointment with the Oncologist & chemo being for Friday, then the receptionist realized my faux pas—I had told her I'd see her Friday. She called me Thursday AM to remind me that I was wrong—it was a day early! I went in and of course Dr. Nair hadn't had a chance to have a conversation with Dr. Bard—and I cooled my heels for 45 minutes while they didn't get together. Finally an answer—Bard was in surgery. I went back to work, hoping that I could reschedule chemo for Friday, but no such luck. I needed to do it yesterday.
For some reason, that quick change in my schedule really threw me for a loop, so much so that I ended up in tears over it! I had things to do, projects to finish, and I wasn't being given a choice in the matter. I was frustrated, upset and for gods sake, crying. K told me that I was setting my standards to high for accomplishing things, and to not worry about it. I just get so upset that I almost know enough, that I almost have a grasp. I know enough to get myself in trouble is what it boils down to. I still have yet to get a reservation system up and running, and I've failed completely in that.
And so back to Thursday. I spent the afternoon reading a book, and snacking while the IV's dripped away, and I realized that I just didn’t want to go home and be by myself. It would have been so nice to have dinner and a conversation with some one, just to hang out with. I ended up getting over myself and making 102 failed images in Paint shop. (I think I have the arithmetic function figured out though.)
Today was manic in comparison. One of the premeds is a steroid, and it sends me speeding. I sold off 5 computers that had been sitting on a shelf for ages, and they were too old or slow to be put back into service anywhere—I mean I have 25 faster, newer PC's from closed offices sitting next to them. But for kids at home, these are fine. It was nice to make back a little money for the department too. It kept me entertained for the afternoon, when I was at a standstill for any other project I had waiting. Heck maybe I'll have Chris bring me the ones from Houston and sell them too! LOL
Oh, the hair. The hair is falling out in HUGE GIANT HANDFULS. Its awful, I have this nasty bald spot on the top of my head now. I swear the hairball from washing my hair this AM was the size of grapefruit—packed together. I have yet to lose hair anywhere else, though. I'm going to look really stupid with no eyelashes or eyebrows! Hair is everywhere, too. I shed as I go along, on my clothes, on the pillow, on the bathroom floor. Yech.
One of my listsibs, D mentioned to me that her son had just completed nearly 3 years of chemotherapy. I've not given too much thought about the length of the treatment so far, I can barely get through to the having surgery part. During chemo you can't really go off and do things in a crowd, and cold season is very dangerous, as you have very few white blood cells to fight off infection. I have been getting an injection to bring them back up to a fairly high level. I guess I can get the Neulasta indefinitely, as they don’t seem very concerned about giving it to me every three weeks. I may ask for the one that boosts the Red blood cells, I was feeling pretty peaked there for a while. At any rate, I may be at this for a while. Dr. Bard explained what the general course of treatment is. After the initial internal debulking, they bank the tumor tissue and use it to test chemo drugs against; I get lots and lots chemo. After the CT and the U/S don’t see and cancerous material, they go in and do surgery again and do a visual check, then do a general radiation treatment to kill off any errant cells still hanging out. I wonder why they don’t do a PET scan—it can detect cancer at a single cell size. It would be ever more efficient. I may see what one of those suckers cost- I bet it’s a blue million, as insurance won't cover it. Bastards.
Dr. Bard used to teach at M.D. Anderson in Houston and at UAMS as well. His specialty has been ovarian cancer for about the last 40 years, it was the subject of his doctorate thesis in '65, and he has practiced in that specialty ever since. He claims to have the highest cure rate in the city, though in '92 it was only 40%. {{Shudder}} He did say that was a decade ago and its even higher now. Still a horrible thought. I'm not in total denial. I'm getting affairs in order in any case, needed to do that for years. I guess I should put some thought into how I'm going to spend the next few years, besides medically. I guess that's really what had me upset on Thursday. I just don’t want to end up incapable of doing something fun by the one thing that might keep me alive, and then find out I passed on all that to get well, and that never materialized. The fine line between the quality of life and the length of life, where and when do you draw it? At the moment I can do it, I have lots of fight left and I pray to whatever deity may chose to take pity on me, that I continue to be capable of fighting.
I think I still have things to say. My great american novel is languishing in a draft on my hard drive, and I have other stories that are in my head. I wonder about how these things will be seen in 25 years, if ever. I wonder who will take charge of them when I'm gone. You read little tales of other fan fiction authors that have passed on, and their work ended up just vanishing. And I want to be more than just a fan writer, it's such a vacuum. Although I imagine that being a published mainstream writer is a bigger vacuum. I had an astonishing experience. I had read a book a couple of years ago- I really liked it, and considered trying to track down the author. I never did that, but the book has stayed with me. I got an email from a listsib that had a quote from that book, and I was so excited that someone else had read it! I mentioned it, and turns out that my correspondent was good friends with the author of this book!! I scraped up a half a page of nice things I liked about code of conduct, and sent them to be forward. Kris was so thrilled to be getting some reader feedback! A feeling I understand completely. It was a very gratifying thing for me. It would be more gratifying if I could get myself back in the habit of writing, but I am distracted and pulled in so many directions. More dedication to the task is what's needed.
Well what a busy week I've had. Chris required surgery for his indirect inguinal hernia, so I hopped in the car and drove to Houston, dogs and all. Jay had flown in so he beat me there, so Chris had someone to hold his hand prior; I arrived after. I discovered then that he had quit his job—15 hour days driving 2500 miles a week for what netted out to be 5.00 an hour: it just wasn't paying the bills. I had wondered how long it was going to take them to part ways, it was a great first job, but not somewhere you'd want to spend the rest of your life.
But he is resting at home, and the only thing I worry about is depression, he seems so fragile in his emotional state. He did seem better yesterday; h called to tell me the Lone Gunmen had all been killed on the X-Files! I forgot to watch it, and drats. Maybe in re-runs.
I had to cut my hair. Long huge hanks of hair were coming out, and it was tangling so badly that I couldn’t' even comb or brush it. The first thing I saw when I caught my reflection in the mirror was "Oh My God I'm my mother!" LOL Scary thought in a lot of ways. When I was in Houston, I stayed at Nancy's house- I couldn't bear to stay at they Animal House, even thought there was an empty bed, so I had breakfast with Nancy and Jenna both mornings. Jenna allowed as how she thought it was going to be ok if I had to cut my hair as she thought it looked cute when it was short. Thank you Jenna, I needed that! At any rate, I got a lock of it in an envelope for the scrapbook, and here are some pictures from April 6, the wedding reception for the CEO held at the office in Little Rock.
I had to come back on Friday, as I was already 2 days late for lab work, but I discovered they are open on Saturday. I went in, and got a chance to thoroughly study my chart and the previous lab results. Everything is out of whack, naturally. I have copies of most of it o there wasn’t anything that surprised m except the correspondence. Dr. Nair has been sending out update letters to Dr. Wijewardarne, and copying in various Gastroenterologist, Dr. Garner, etc. I'm the very pleasant lady from Texas with upper right quadrant pain, if anyone asks.
And, still I wait for an appointment with the gynecological oncologist surgeon. I had one with Ramon for the 23rd, but he was out of network on my insurance, and the cost was way too high, the stop loss was 5,000 higher and the co-pay was 20% higher—on hundred of thousands of dollars for surgery, I think that it was unsupportable. Dr. Ramon's office did recommend a former professor of OG that was in private practice at Baptist. He's in the phone book, so I recognized the name, Dr. Bard. Dr. Garners' office is the one to refer me, and Beth was going to check and make sure that was acceptable to Garner, then make me an appointment. So, I'm back to waiting. I hope I don’t miss my window of opportunity after this chemo and have to wait three more weeks! For me personally, I hate the waiting. For me at work it would be fabulous. I'm having a hard time finishing up the projects I need to before I take an extended leave of absence.
I got some new books, a listsib had recommended a series by CS Friedman, and I am so looking forward to that. I got another in the Nick Seafort saga, the 2nd in the Honor Harrington series (the only one I could find, I need #1!) and a replacement copy of the first SF book I ever read, Corridors of Time by Poul Anderson. He passed away last year, and I was so sad, he had been such a pillar and landmark for me. I have a ton of books on tape, Jay suggested I put them all on CD. Huh, go figure. Never occurred to me. I'll have to put that little project on hold; I'm never going to finish the ones I have already!
Ah, Sunday. It is an absolutely gorgeous day. I have all the doors thrown wide open, the sun is shining, a gentle breeze is blowing. It could not be a more perfect Spring day. The pollen is terrible—I have never seen it like this! My car is literally covered in yellow, as is anything that is stationary for more than an hour. Ick.
When it rains it pours. Boy Unit called me yesterday with some distressing news, his testicles had swollen up and his tongue had turned black. I told him to go to the ER, or a doctor or something. He took my advice, and about 10pm last night his girlfriend called me to say that the physicians had elected to not do surgery, but keep him over night for observation.
And of course he has no idea what the problem is, no one has told him, he hasn't asked, I dunno. So. A mysterious ailment, a hospital stay and I'm stuck here in Little Rock trying to figure out who I can deputize to go play Mom. He may stay in there one more day, too.
Had a chat online with the Sibling Units, it was interesting as always. Wide range of topics, and bizarre references. Did you know that Nemesis follows Hercules? Or that Reproduction begets oncology? LOL I have no idea, it was yesterday and I've slept (sort of) since then. Maybe I need a real education after all.
I managed to rip out a short story this weekend. I hadn't written a word since the fiasco over the Krycek Christmas Carol, and I had started to wonder if I had forgotten fiction completely. But, I got a spur on from someone, borrowed an idea that hit the trash heap months ago and added the 2 together, and voila! A short story and I can wipe that idea out of the books. The idea had been intended for a much longer collaboration, but without the collaborator it didn't make sense. It's an amusing piece and rated G, even. {g} At the same time, I made a giant pot of vegetable soup, and fruit jello salad and cleaned the living room. Its really too much excitement, I think I need a lie down.
On the health front: I'm still in a holding pattern. Dr. Garner's office is getting all of my charts, reports and test results to Dr. Ramon, and then he'll have an appointment. Tomorrow, presumably they will call me. Mean while, I'm tired most of the time, and not sleeping well, but no nausea or other nasty symptoms. I had a case of blurred vision yesterday—couldn’t see out of both eyes. I could *almost* focus one eye at a time, but nothing more. It passed after a few minutes, so it was OK. The numbness and deep ache in the bones is almost gone, though.
I have a flat out blue million projects that I have let pile up while I was doing this ZoneZine, and I need to start finishing them. It's starting to get ridiculous.
Just a short one today.
Chemo kicked my ass. I have been barely mobile since Sunday, though the Vicodan 'script helped tremendously. The worst is the bones aching deep deep down-- my feet hurt and walking much of anywhere is tough.
Despite this, I'm off for another round of tests today, CT scans and ultrasounds of the lower abdomen this time. The goal is to locate the rest of the cancer. They sprung it on me as a surprise—it was going to be Friday—so I don't have anyone too take me over there. DM was so sweet yesterday; he picked me up, jollied me a bit, and gracefully waited in the Gynecologists waiting room by taking a nap. He really is a treasure, and I', lucky to have him as a friend. Though I have to admit, from our past history of confrontations over the phone, he wasn't the one I expected to become fast friends with. Go figure.
I had my first chemo yesterday and so far only a little nausea as I hadn't eaten, and a minor bout of diarrhea, (eeyyew!) It took 5 and half hours, only 3 longer than I had been told. It was not at all bad; the lady that managed to get the IV inserted had the most gorgeous green eyes, like J's. I had a bag of Tagamet and Decadron (Tagamet is actually a histamine blocker too) and a flush with plain saline. Then another bag with Benadryl and Anzemet an anti-nausea medication. After a flush I got a bag o'nasty called Taxol, a flush and another bag o'nasty called Carboplatin. It was mondo boring. If I had known that I was going to have to sit in a chair for nearly six hours, I would have insisted on the left hand and taken my freaking writing journal. A book. I napped after the Benadryl hit, so that was good. The chemo lab is a long room with about 30 reclining chairs and nurses running everywhere that check things as they go by. The other patients are a little chatty and friendly; they all sussed out it was my first treatment and there was a definite feeling of camaraderie there.
Boy Unit and I went to pick up some Chinese food after wards. I was STARVING. I had a little run in with nausea waiting at the restaurant, but I distracted myself by calling the pharmacy and making sure they had what I was going to come in and get filled, if I should take it before eating, and how late were they open. It worked, too. Visualization is something else I've been using. Just imagine all those toxic chemicals racing through my bloodstream as Alex Krycek with a plam, and all the cancer cells as Alien Bounty Hunters. If you don't have a clue about what I said, I could explain it if you wanted.
I feel well enough that I am planning on running some errands and maybe drop in on a wedding reception this afternoon I had thought I wasn't going to be able to attend. Tonight, tomorrow, who knows? In the meantime get up get out and go for it. I feel much better emotionally now that I have a goal, a plan and a destination. The unknown is always the worst for me I HATE SURPRISES> and I could never get anyone to understand that, though I have learned to accept fun surprises with more grace as I move towards my cronage. (heh, new word.)
I see surgeons next week and get a new pile of tests and scans done in
preparation for them to give me their guestimation of how many body parts I can expect to be removed, bisected, dissected and hacked up. That will be
sometime in the last week of April. I suspect I'll come out of it a whole lo0t lighter. Maybe they can do a tummy tuck while they are in there.... LOL. I'll do a chemo on April 25 and then surgery right after that, with the intervening three weeks to recuperate before they continue with the Chemo.
And I am insured out the kazoo. I have health insurance, a cancer rider on top of that, short term and long term disability so if I can't work beyond the 6 weeks paid time off I get, then I am paid portions of my salary. I am in no
danger of being let go from my post; the folks at WWTS have always been my allies and support group for the last 19 years. It might get tight, but I
can let go the car and immediately see a huge reduction in expenses-- it's
really hubris that thing, but I love it.
I am in no mood for introspection today. I have a window of opportunity here today, so I scavenged bits and pieces of things to make sure I have missed anything. I have to do taxes still (Chris still hasn't gotten his W2!!) and pay bills balance the check book and go out get a few things and brush up on my disinfection protocols here. That is the hard part learning to NOT BE A SLOB!! {g} Living off in the ozone if fun, but I rather don't pay attention things here on earth and they get out of hand.
The post office is open now so it's time to go.
OK, the dreading part is over—I have cancer, and it's probably ovarian cancer to boot. The pathology on the liver mass was adenocarcinoma—the good news is that ovarian cancer responds very well to chemotherapy, which I start tomorrow.
I'll get two treatments of chemo; I'll see a gynecologist next week and then a have a CT scan of the abdomen and a consult with the other surgeon. I'll have surgery some time in the first of the month, then 4 to 6 more chemo treatments after that. Oh Joy.
Dr. Nair said not to be discouraged, that I am young and relatively healthy is in my favor, and huge strides have been made in treating ovarian cancer specifically. The surgery is to basically remove as much of the cancerous masses as possible so that there is a lesser amount to be treated. There are a wide variety of chemo drugs to use, and if it doesn't appear that what they are using is effective, then they can change the therapy.
But it IS ovarian cancer. The CT showed a mass on the spleen as well, which the MRI showed as clear—Dr. Nair says that is the difference in the mediums, which is why they use both.
I lost three pounds since my last visit there on March 28. I'm attributing that to horking up and not eating for 2 and a half days. I still hurt from the biopsy.
I imagine tomorrow will be pretty bad.
Ah, the eve of destruction or salvation. Let the tests begin, I say. Susie says the lesions are small, and there is only one that appears to be in a position that would be suitable for a fine needle biopsy. We'll just have to see.
I talked to Sibling Units 1 & 4 today and my aunt as well. There is a slow trickle of replies to the emails I dreaded sending out, and the folks I expected to reply have done so. I am glad I sent them out—I did need to hear from them, and hear their words of support and sympathy.
There was an event a few years back. I was driving home from Florida in the van and it died on the freeway on New Years Day in Louisiana in the outskirts of the Big Easy. I had to call a tow truck, and the men who came to get us (Chris, the dogs and me) were very sympathetic. They dragged the van over to an auto parts store, helped replace the first and easiest thing, and when it didn't work, they went to work. He had a friend who knew a friend that did work at his house, not an official repair shop, but Sam agreed to do the repair over night, or promised to do his best.
The house was waaaay out in the boonies of LA, and I could almost hear the banjos on the bayou as we went further and further away from the little cluster of Civilization that clung around the freeway. Sam let me use his phone to call a few motels to try an find a room in a city beset with Sugar Bowl fever and New Years' revelers—it was a little Super 8 back out at the freeway. The tow truck driver let us pile the dogs (four of them!) into the cab of the truck and he took us back out to the motel, and they gave us the dog room. It was about 80$ for the night, when during the rest of the year it might have been 39$. The heater was broken, and of course it was the absolute coldest day of the entire year; all of our coats and clothes were, you guessed it—at the van 25 miles away. It was a miserable night. The only food nearby was a Denny's and it was not even a nice one. The next day I called Sam, and he had done it, the van was going to be ready about 1pm! We checked out and called a taxi to take us back to Sams' place. I only had a faint idea of where this was at—I knew it was on Hickory drive in Pearl River. The lady taxi driver called some of her cohorts and between them me and driving around, we managed to drive literally right to it.
I didn't realize he would expect cash. I could have gotten what he wanted (325.00, very cheep) if I had figured that out in advance, but I didn't. He accepted the check I wrote with a wobbly grace, and at the end of 24 hours, we were back on our way toward Houston.
The thing that had made it possible was the kindness of strangers. They all had some empathy for my plight, and rather than take a hard line with rules and such, things got bent and pushed and set aside. It was really my first episode with learning about having to rely on the kindness of strangers, and also asking for and getting what I needed from them. It was such a growing experience for me, through adversity the best lessons are taught. I had to face the struggle, deal with it and get through it. I took my first taxi ride, and in the end it was far far less troublesome than it could have been if I had been taken to a repair shop that didn’t open for 3 more days, and left there. There wasn't a rent car to be had in 150 miles; I had no one to drive to N.O. to come and rescue me. I had to make it happen by asking if something, anything could be done.
So, here I am faced with adversity again. I know that if I need, I can ask for help and get it. The neighbor can help care for the pets, I can get rides. I could ask someone to go to the store for me. I am not alone, but it sure is damn nice to have Sibling Unit #2 here to lend moral support.
