6/3/2014

Well, it has been an interesting couple of days. Another radiation treatment today, same crack-of-dawn schedule but this time Peg drove me, because after radiation came my first date with chemo and we weren’t sure I’d be able to drive afterwards. So far, however, all is well.

The radiation treatment was much faster today, now that we have the basics down. 15 minutes with my friend the square-eyed circular cyclops, then off to Kaiser where I sat in a treatment chair and waited (I was early), followed by the First Use of My Port! I’ll bet that Tony Stark wasn’t as eager as I was. First I got Talked To, again, for getting my new tattoo (possible infection! Don’t do that again!), then I got Talked To for covering the port incision site with a BandAid (“But the surgeon told me to!”) and then they numbed my skin, and then they stuck a needle through said skin and into the incision port and connected an IV line to that, and taped everything down tight. Then the MitoMYcin was pumped into the port (two huge syringes loaded with purple liquid, took about 10 minutes to upload), then the IV lines were connected to a device which holds the first dose of FU-5 and is about the size and weight of a 1970s portable cassette player, and that’s inside a highly unfashionable black pouch that hangs off a belt in front of me and flops around like a combination man-purse and codpiece. I have no idea how I’m going to sleep in this thing. Not a fan.

They used that same clear packaging-sealing tape they used after my surgery. “I presume I can shower,” says I. “Don’t get it [the pump] wet! Sponge baths!” How this comports with the sitz baths I’m supposed to take to keep my bottom happy was not covered. I suppose I can unstrap the chemo pump and tape it to the top of my head. Also, if they had told me this beforehand I would have showered this morning and washed my hair, but no. By Saturday, when the gizmo comes off, my hair will look like a salt-and-pepper fright-wig.

All my exclamation points, supra, are rather making it sound as though I had fallen into the hands of the Chemo Tyrant, but that’s not the case. Audrey, the chemo nurse, is very thorough and  very friendly and, as she says, “somebody’s got to be the mommy.” Since I agree with her, I take everything to heart, nod,  and get her to laugh. I sometimes think that getting medical people to laugh is one of my major defense strategies, and that’s probably a good thing.

More radiation tomorrow, on Thursday they switch out the cassette of 5-FU, more radiation on Friday, and Saturdays the codpiece comes off. Then maybe four blessed weeks of no chemo, no codpieces, etc.

No side-effects so far, except that I’m tired. All my yarn peeps gave me big, careful hugs at the group meeting this afternoon, and I am stocked up with enough yarn to make a big afghan for other chemo patients to cuddle under. It’s cold in there.

6/2/2014

Forgot to tell you that yesterday the head chemo nurse saw my new tattoo and almost took my head off. Possible infection! Possible unexpected reactions! Bad girl! When I demurred, she said that “somebody has to be the grown-up around here” and marched off. Trouble is, I agree with her and, in fact, am happy that she has to be the grown-up and not me. Also happy that I didn’t say anything about a new tattoo before Pueo joined my life. Sotto voce, I have named the nurse “Audrey Draconis.”

The hardest part of today was getting up, groggy with sleep, at 6:15am. I generally feel awful when I haven’t had sufficient sleep, so don’t know whether to attribute this afternoon’s upset to that or to the radiation. Which really was a piece of cake.

I showered and put on my “I’m not dead yet” t-shirt, then remembered some of the other patients I have seen in the radiology waiting-room, people who are not dead yet but are creeping closer by the hour. I changed into a different t-shirt, out of respect for them. As it turned out, I was the first patient of the day so didn’t have to worry about offending anyone on my way in, but still.

photo courtesy Wikimedia Commons

Being in the radiology machine is rather like being inside a Transformer. First, red laser lights are used to make sure the radiation goes where the doctor wants it to, then the bed slides you into the gizmo until the desired body part is reached. “Gizmo” isn’t really the right word. This machine is rather like a humongous glazed doughnut with a bite taken out of it. It buzzes and clicks, an arm folds out then folds itself back in, and the business end of it circles around you with lugubrious dignity, right to left, stopping often to click and buzz as it zaps radiation at the tumors. Takes about 15 minutes, during which I think about cancer cells falling into little bits and microphages like tiny Pac Men gobbling up the pieces. Then off to talk to the on-duty radiation oncologist – one I had not seen before – who needed to give me his version of the Your Friend Radiation Therapy speech. He was very thorough and approved of my gung-ho attitude. He also said that I might get 28 zappings instead of 25, because a lymph node lit up during the PET scan. He said the chemo was going to be awful. He said that by the end of the therapy, I was going to hate his guts. We shall see. Total of half an hour, home by 9:30.

Then I drove myself home, and Steve and Nancy applied the first  coat of paint to the bedroom floor, and I put in a few hours at work, during which I discovered that a co-worker has apparently been assigned to take over part of my job. My supervising attorney doesn’t know yet about the cancer and the treatment, so this was not done as a favor. It pisses me off, because the co-worker has neglected to do an important part of her job since the middle of March, so this assignment is not because she needs more work. So I got all upset about that, before I put it aside for the time being.

I think a nap is in order, don’t you?

5/28/2014

Great news! I start radiation on Monday, and chemo on Tuesday. I am tremendously excited — it’s like finally setting out on a journey after all the endless nitpicks and preparations. I know that they still have some hoops they want me to jump through, but the hoops won’t delay the start of treatment.

In the meantime, my house is a complete jumble. Steve pulled the carpet and pad out of the bedroom and scrubbed everything down with vinegar and water. Today it was finally dry enough to lay down a coat of sealer/primer — oil based, so it stinks. I need to visit Home Depot this week-end and pick up 3 gallons of floor & deck paint. It will stink, too, but with luck this will all be done by the time Caitlin arrives.

My bedroom is scattered through the rest of the house. The dryer is still out of commission and sitting on the floor of the second bedroom, and is going to stay there until the repair man shows up next week. The cat feeding station is atop the kitchen counter, because otherwise Abby scarfs down their food, and there is little in the world as bad-smelling as cat-food breath on a dog. I have a big pot of chicken vegetable soup to freeze.

My yarn peeps have gifted me with home-made socks and a wildly colored pair of hand-knitted slippers and matching hat — it’s sure to be cold during radiation, and these will help keep me from freezing. After I finish with Home Depot, I’ll stop at Costco and bring down a haunch of dog kibble and fresh veggies, to start juicing. The veggies, not the dog kibble. If you hear of me eating dog kibble, an intervention will definitely be called for.

You just get ready, cancer. The ass-kicking is about to commence.

5/27/2014

I misspoke in the last update – Caitlin arrives on 6/17. Wishful thinking on my part. But she advises that she has ordered two “Fuck Cancer” t-shirts so we can wear matching outfits when I go in for radiation and/or chemo.

After sifting through tons of advice on food, I finally talked to a Kaiser dietician this morning and got much good advice, and ordered a fairly inexpensive juicer from Amazon. Have also downloaded recipes for Jugo Verde, a fantastic Mexican juice made with all kinds of great stuff. I don’t know if I can get fresh nopal here, but I’ll look around. More stuff in my arsenal. Soups! I will make and freeze soups this week. Also, I now have a recipe for chia pudding. I suppose if I don’t like it, I can use it to grow green hair on the cats.

And yesterday, I drove into Kailua and got this amazing, ferocious tattoo. If this doesn’t scare the hell out of cancer cells, I don’t know what will. Still a little red, but that will settle out.

5/25/14

Another visit to KCH last Friday, for yet another CT scan (I’m up to three now) — this one to determine where to aim the radiation beams. Learned that I get to lie on my back during radiation, not upended as I had feared. Then I got tattooed to show the radiation techs were to shoot me. Not the most inspiring tats I have ever received, but probably more useful than my other two.

Apparently I won’t be starting therapy this week, but the week after. Chemo and radiation will start together (as opposed to what I was originally told), and they need the extra days in order to coordinate. I will admit that I have been a horrendous pain in the ass about the timing of all this: I want it to start now so I can get through it soon. So I have been getting many assurances that they are moving as fast as they can, consistent, of course, with best practices. I assure them that I understand and feel that I am in good hands, I just want all this to start yesterday, thanks very much.

The truth is that I can use this week off. I shopped for good protein and leafy greens (the diet needs to change), and I want to set up an appointment with my hair cutter. I’ve missed two meetings of the knitting group and I need to catch up with my yarn peeps. Ordered more cat litter (Amazon, free delivery). There’s always a chance that Kaiser will want to ship me to Honolulu for an MRI, but they can’t have me until after Tuesday, and the radiation folk assured me that treatment can start even without it.

I have an appointment tomorrow in Kailua to have a new tattoo inked. I’ve been playing with this idea for a while: I got my last tat over 30 years ago, before Chris, and it seems appropriate to commemorate this change in my life with another one. I have found a great photo of a great horned owl in flight, head cocked to check out rumors of dinner. A take-no-prisoners predator.

Ordered a black t-shirt, authorized by the Monte Python marketing gods, that says “Not dead yet” which I intend to wear to radiation sessions. Also downloaded an icon that says “Fuck Cancer.” I think of these, together with the tattoo, as weapons, and I intend to deploy them. I will collect more.

Best of all, Caitlin arrives on the 27th. I’m hoping that I feel well enough so that we can have fun in the midst of all the rest of this nonsense, but she maintains that she can cope with me if I’m feeling awful. And I know she can.

5/20/2014

Katy’s 29th birthday! She was planning to  be here on the 27th, but has to postpone her visit because she has been offered the directorship not only of Apotheke, the bar she has managed, but its sister establishment Pulqueria, a Mexican restaurant. We have pushed her visit back a couple of weeks to allow her to get things set up. And she gets a big raise, to boot!

This works quite well for me. We had figured that she’d be able to help me through the rougher parts of the treatment, but the treatment probably won’t start until next week. So a later visit, while less fun for her, will be more help for me.

I had an unexpected appointment at the chemotherapy clinic at downtown Kailua, and that call was barely over before the radiology clinic called to ask me to drop by. They had the results of the PET scan but didn’t go into it in detail; we set up another appointment for Friday. My understanding is that on Friday they’ll do another CT scan, then create whatever kind of immobilizing device they will put me in for the actual radiation — important because I have to be in the exact same position each time for the three or four lasers they will use. Either Evelyn Waugh or Lord Stanhope said of sex, that the pleasure is momentary, the position ridiculous, and the expense damnable. I have the feeling that I’m learning the last two-thirds of that first-hand.

Then off to Kailua, where I learned about the many fun things that the chemotherapy may do to me. The chemo pharmacist explained that because I will simultaneously be having radiation treatment, the dose of chemo drugs will be lower. Anything that keeps me from barfing and losing my hair is good. Tuesday is Chemo Day at the Kailua clinic, but every day is radiation day in Kealakekua. The incision where the port was inserted is healing well.

The only alarming thing about today’s medical adventures is that the radiologist says they may have spotted something odd in the nasopharynx sinus, up in my head. (The CT-PET scan was a full-body scan, so no cracks about where I keep my head, please.) But maybe not. I should learn more when I talk to the oncologist, which should be before I start treatment.

I think that, at this point, my major concern is that all these new tests keep pushing back the start-date on my treatment. Now there’s talk of an MRI, which Kaiser will undoubtedly want to be done at the hospital in Honolulu. So I’m up to two CT scans and one PET scan, another CT scan in the offing, and maybe an MRI — I really am going to be Godzilla by the end of this!

5/14/14

11:30 meeting with the oncologist, Dr. Beale, in the downtown Kona clinic. Warm and a little muggy in Kailua, but Kaiser keeps its clinical offices cold, cold, cold, and I always forget to bring a sweater. The meeting went well: he confirmed the CT findings of a localized cancer but warned that the PET scan may disagree; gave me a prescription for an anti-nausea med which I am supposed to carry with me at all times, listened to me and to my innards, pushed at all my lymph nodes but did not touch the tumor itself (for which I was grateful: that bastard hurts) and firmed up the treatment plan a little, but much still depends on the results of the PET scan, which happens tomorrow on (of course) Oahu, but Kaiser will pick up the tab for the flights and the taxis to and from the imaging site.

Afterwards, I drove up and down Kuakini Highway until I found the quilting and yarn shop I had been told about, bought some yarn and a ball winder with which to turn said yarn into neat balls, then dropped in at the Thai restaurant next door. Their menu said they could prepare most foods mild, medium, hot, or Thai hot. The waitress said Thai hot means two peppers; I said that my usual preference was “melt my face off” hot, and she laughed and brought me my papaya salad Thai hot, which was almost hot enough. I am trying to eat foods that I may not be able to eat once the chemo starts, and Thai is high on that list. I’m still looking for good Schezwan or Mexican or Indian restaurants.

So tomorrow, up at dawn to eat a breakfast of only protein, and not fried at that, then off to the South Kona  clinic to pick up my taxi vouchers on my way to the airport, and another day of flying, being carted about, stuck in an icy room, and shoved into a strange machine. They’ll use my brand-new port to shoot me up with the dye. I am both curious and dubious about that.

I am starting to feel isolated and depressed, which is not surprising. I’m not looking forward to the treatment, but I wish like hell that it would start so that it can get over with. It has only been 14 days since the diagnosis and much has happened since then, but I’m feeling impatient. C’mon, let’s start kicking this thing’s ass already!

5/13/14

Put in five hours of office work, then two hours of knitting group. Beginning to feel a bit divorced from everything.