This picture of course makes my mouth look very attractive in a lot of ways, but mostly look at the white spots in the back of my throat. They've been multiplying all day, right in my gag zone. I'm keeping my fingers crossed for drugs working by Tuesday . . .
I seem to have developed a little side-line infection here, over the last day, in my mouth. Thrush is evidently an overexpression of the oral Candida fungus, which most often attacks babies, pregnant women, people with HIV, or, of course, people fighting cancer. It’s not painful at this stage, except that I’ve been spending most of my waking time running my tongue around my mouth and feeling the little white growths, so I have some mouth cramps. The ones that I can reach with my fingernails—on the sides of my cheeks—I can just scrape right off, which is a relief for my tongue for about 3 hours until they grow back again. Unfortunately, the ones at the back of my soft palate and my throat aren’t so easy to reach, and when I do stick my fingernail back there, I trigger the gag reflex (and of course we all know I’m tired of that). Anyway, I’ll pick up a prescription for it in a couple hours, and it should be gone within a couple days.
Speaking of prescriptions—yes, this is reimbursed—but Thursday I picked up 6 doses of GCSF (one week) to make my white cells healthy (it’s a shot I give myself), and the total came to $1,700. That’s not a typo.
I feel okay today. Maybe a little spacier, maybe a little more wired (my infusion yesterday included an extra 10 mg of dexamethazone, bringing my total for the day up to a whopping 30 mg), maybe a little more tired. My port placement seems to have gone well—I have some pain, but not too much. One benefit of removing my port last year and replacing it this year is that I now have a “power port,” which will accept even the radioactive contrast from the CTs and MRIs that I’ll probably be getting throughout the remainder of the year. This is excellent news, because it’s all the fewer IVs stuck into my left arm.
There was a bit of a challenge with my port placement—I was pretty dopey and not feeling any pain, but I could hear the process and it sounds like a resident—someone who hadn’t done many placements—was in charge of the surgery. This was perfectly fine—a little slow, perhaps, but careful, with a lot of pressure at the end stitching up the subcutaneous layers and supergluing the skin . . . but at the very end she jabbed herself in the finger with one of my needles.
This is obviously a very scary experience, given all the blood-borne diseases we have today, and my heart ached for her fear, even though I know my blood is clean—that is, no HIV, no Hepatitis, no anything that’s likely to cause her any trouble at all. In fact, if she had to stick herself with someone’s blood, mine was probably pretty good. I did have a social worker come to see me in the recovery room, though, and I did have some (more) blood taken so they could run the necessary tests to set her mind at ease.
I was able to order a lunch while I recovered—a chicken taco salad, a chocolate and strawberry cheesecake dessert and a Coke, and I only had to have a few harsh words with Ian when it arrived and he moved right in, expecting to share my bounty. I reminded him that I had skipped breakfast, and had a surgery, and he’d eaten and had time to snack and/or whatever else he wanted, and he could go get his sandwich out of the car (since I wasn’t there to go with him, he evidently wandered through a couple different aisles, clicking the alarm button, before he actually made contact . . .). I did share my Coke and my dessert.
After my lunch, they discharged me—with perhaps fewer than the usual instructions on how to keep my new port site clean while it heals for the next couple days (but common sense should be enough), and I was over at the SCCA and installed in my bed by around 1:30pm.
My first return chemo went fine. I had a nurse I’ve known for a long time, who I enjoy talking to. The infusion nurses at the SCCA are pretty matter-of-fact, pretty sweet. They are doing their jobs, and I finally don’t see their jobs as these horrible, horrible experiences that they have to drag themselves to every day. I think they enjoy their patients, and they enjoy each other’s company, and they seem to have some flexibility of schedule if they want it (lots of four 10-hour days, for example, with long weekends and whatnot). I was in for about 8 hours, and it could’ve been worse. Also, I had an enjoyable visit from Debra Jarvis, the SCCA chaplain, who in a strange twist of fate was treated for Stage II breast cancer there about 3 years ago and wrote a book about her experiences.
I shared with Debra some of what I’ve been feeling about this 4th time around with cancer—about how I’m not fighting it, about how I’m still not identifying myself as a “cancer patient”, about how I am starting to understand that one’s path, what the Universe wants you to do, is not necessarily what you think you want to do. Yes, a couple short weeks ago, I was strenuously against having cancer again. I was avoiding, to the best of my powers, all chances that I’d find out this news again, that I’d be plunged back into this cycle again, of exhaustion and need and physical ailment, that I’d “lose my autonomy,” that I’d “yet again, not get to be a normal 35-year-old.”
But virtually overnight, I stopped feeling that way. How do I know what a “normal 35-year-old” does experience? All I can know (and that has its limits, I’m discovering) is what I’m experiencing. And if I choose to surf through this experience—if I choose to sleep when I’m tired, ask for assistance when I need it, marvel at the way my brain still works even when I’m dopey and loopy and should sleep again—if I choose to ride the waves and not try to force my way, coughing and choking and paddling hard through pounding salt water, this is okay. In fact, this is right.
This is easy.
So I’m home now, 14 hours after I left, ported, infused, high on steroids and exhausted. I’m going to have a towel shower (reminders of 7th grade PE and the new, hugely embarassing menstrual cycle), and go to bed. And presumably doze fitfully all night. But I’ll be in bed.
Love and thanks to you all—it was a fine day. But big.
The last song that I sang at Tula’s, for my winter voice class “final”, was a luscious, slow piece called “Small Day Tomorrow.” It’s about not having to go to work the next day, about being able to spend some time with a lover—just slowly and quietly, maybe get out of town for the day, relax and let the hours flow as they will. No worry, no rush—not have anything to do. I love the song, and I plan to add it to my repertoire (when I have one, sometime in the future).
Tomorrow, however, is not a small day. Tomorrow starts tonight, when I have my first Hibiclens shower to make sure my torso is spic-and-span and aseptic (using a clean towel to dry, and wearing a clean t-shirt to bed), then continues tomorrow morning about 6am when I take my second Hibiclens shower, and use my second clean towel, to make extra extra sure my torso is spic-and-span and aseptic. Of course, I have issues with all the water used to clean all these towels, so I’m planning to replace both our towels tonight and use Ian’s (before he gets his hands on it) before bed, then use mine in the morning. His should be dry by then.
I have to stop eating at midnight—not usually a problem—and I have to be at the UW hospital at either 7am or 9am or sometime else early. I think I’m going to go with
They access my port as part of the placement procedure, to take an X-ray and make sure that the tube is correctly seated, going up to the artery in my neck and down toward my heart. The reason for the port is at least two-fold—not only will I not get stuck in the arm once a week, but the chemotherapy drugs are so toxic that the small veins in the arm are just too little and will be burned by the poisons. Also, several years ago I had a surgery that removed 11 lymph nodes from under my right arm—before I even knew what lymph nodes were—and I can no longer have any blood draws or blood pressure tests on my right arm due to fear of lymphedema (a swelling from which I have never suffered).
Anyway, the main entry of the port—the “port” part of the full name, “port-o-cath”, will be implanted in my left chest, slightly above my left breast, in a little pocket made in the flesh. I’m hoping to have it in pretty much the same place as before, because 5 years of accessing it (thick, bent needle) killed off the nerves at the access point and I didn’t actually feel the entry anymore. There are some creams you can put on to numb the area . . . but that just got tedious. Then, moving up my chest from the port, there will be a thin, flexible tube. This tube will be just under the skin until my collar bone, then it will go under the collar bone and into an artery there at the neck. From what I understand, it goes slightly up into the artery, then the artery branches and the tube will be redirected to come back down toward my heart, where it will sit, quietly minding its own business, maybe an inch above the pumping and gushing. The artery is evidently about 1 inch in diameter there—much, much larger than the veins in the arm—and large enough to keep from being damaged by the beneficial toxins.
Then my port access will stay . . . and I will go and have some lunch . . . and then I’m due back at the SCCA at
This is a bigger deal than it was in the past, because of the amount of disease in my body, so a couple things have been added. First of all, I’ll be taking a pill to help my kidneys release toxins, which I will begin tomorrow morning. Then I’ll have my typical weekly infusion—Taxol, Navelbine, Herceptin, ovarian blockers, and another kidney support, and all the premeds so I don’t have a reaction to any of those things, then I’ll have several hours (3? 4?) of simple hydration—again to help my kidneys clear out the crap in my lungs. Cancer cells, when they die, are not good on the health of the body, and since I have a lot of them, Dr Specht is expecting a lot to die off pretty much immediately. This is actually really good news—I will probably be back to walking to the Essential Baking Company myself soon with all my added lung capacity—maybe even before my hair falls out—but the weekend could be rough. I’m a little worried about how sick I’ll feel, because I know (from the scans) that I’m much sicker now than I’ve even been before. But then, the huge network of friends and family and strangers who are supporting me through this, and all the people I’ve seen who’ve kept the rest of me so healthy for so long, are really doing amazing things to get me through, and so . . . on the other hand I’m not worried at all.
But tomorrow is a big day.
Control is an insidious issue in our society today. There may be some societies where control—being in charge of your life, of your domain, of your social circles, of your car, of how and what you do with your life—aren’t as important as they are here. But here, in the
I am no stranger to control issues. I am proud of the skills I’ve formed as I’ve matured. I trust myself to drive competently and well and park well (sometimes to the frustration of Ian, who is my primary chauffeur right now—I seem to have a hard time relinquishing control of the driving, even though I’ve been required to relinquish control of the car). I trust myself to organize events—kayak trips, parties, weekends out to Orcas—and remember the details so people are comfortable and safe and warm and dry and well-fed. I like the system that I use to pay our bills—I’m even a little proud that it’s not too anal—but that I still get things paid on time. I like my system of laundry, I like how we deal with our dogs.
However . . . and this is the big however . . . all it takes is one wrench in the works, and control flies out the window. And when control flies out the window, does choice fly out as well?
This is a big question, actually. What is the difference between choice—between seeing different options and deciding on the best one—and control? It really does seem that there isn’t any difference. But the other big question is this—when we relinquish choice, when we relinquish control—are we actually relinquishing anything at all? Control, and choice, in other words, may just be an illusion.
In the last few days, I have given up control of most things in my life. I can’t drive. My friends have done my cooking and cleaning, including my laundry. I don’t have the energy to take care of the dogs—it was actually quite a coup that I found enough strength last night to take
As my brother pointed out today when he came to mop up the doughnuts, I may have taken a year and a half off from seeing Western doctors, but I’m sure making up for it right now.
It’s true. I’ve seen an MD every day this weekend, I see my oncologist tomorrow, I see my radiation oncologist again on Friday. I finished 5 days of radiation this morning (pic of the very, very lovely mask coming soon), I get a port placed and start chemo on Thursday, I have a spinal MRI on Friday. I don’t even pretend any longer to have anything scheduled that’s not related to what doctors want from me—I just say “sure, tomorrow at ten sounds good,” and mark my calendar.
Given the choice, I would hesitate a bit on all the bombardment I’m getting. I’m sure I’m close to glowing in the dark, if I don’t already. I would maybe want fewer CTs, fewer markered iodine MRIs, less ozone-and-blue-light full-brain radiation. From everything I’ve read and believe about the health of the human body . . . these barrages are not good. And yet, I don’t really have a choice. That is, as I said a while ago, I could choose nothing and probably be dead in a couple months, or I could do what I have done: choose to trust these experts, follow their path, and choose to let them control my life for the time being.
I'm surprised to report that I'm finding it liberating.
Yesterday morning, after my
I explained that I’d had one of my Zofran when I woke at 4am—I’d felt a bit oogy in the tummy—but it seemed in keeping with the slight discomforts I’d expect from my current regimen so I wasn’t worried. “Okay,” he said, “that’s fine. But what would you do if you threw up this evening?”
“Um . . .” I said. “Well, usually I just throw up in the morning, and usually it’s just kind of bile . . .”
“But if you were to throw up this evening, what would you do?”
I looked at him blankly for a minute. Then suddenly something dawned. “Oh!” I said, “I’d call you, then go to the ER.”
“Right,” he replied. “Very good. It was a test. Anything unusual, you call me and go directly to the ER, and I will make sure they’re expecting you.”
So this morning, even though I had a Zofran at 6am when I woke, I still felt a little nauseas at 7:30, and I was, sadly, unable to avoid a somewhat lavish puking then, right when I was planning to take a shower and ease into my morning before my 10:00am radiation.
“Ian,” I called from the bathroom, “get Dr. Loiselle on the phone. We have to go to the ER.”
The concern, of course, with an unexpected puking, is that one of the tumors in my head is swelling a little and could put me at more risk of serious things than I am in already, or that I will need a shunt from my pate to my abdomen, because the ductwork already in my skull isn’t sufficient to reduce all the extra liquid. But as it turned out, the extra brain CT was no less normal than before (radiation has a cumulative effect, so I’ll get another diagnostic test in about a month and expect some significant changes then), and my responses to the varying choices of the neurological test (“Squeeze my fingers. Stand on your toes. Follow my finger with your eyes, without moving your head.”) were as fine as usual. I’ve been eating lots of rich food this weekend, with a house full of excellent cooks who have all made themselves conveniently—blessedly—at home, and yesterday I started up quite the regimen of stool softening, so it seems likely that I was merely experiencing some guts response as opposed to a brain response. At any rate, Dr Loiselle pointed out that we are playing with fire here, and it was good to be near the fire extinguisher, and he complimented us on our excellent following of directions.
It is nice to live 7 minutes from the hospital, and it was glorious to arrive back home at
This morning I experienced both the blue light behind my eyelids, and the ozone scent of radiation in my head. It’s a bit amazing to me that I can have such a short treatment—two minutes total—and feel any sort of effect at all, but there you have it. I feel mostly normal (for these days, that is), but I was E X H A U S T E D yesterday afternoon, and had to go lie down for an hour and a half or something. Of course, I’d spent several hours on our boat, driving around various friends, and gone to a park and had a sandwich and dragged myself up a hill to use a park bathroom (which involved me using a ninja move with my foot to flush the toilet—I was not going to touch the lever with my hand) . . . so I suppose it was a big day for someone with lungs at half-capacity.
I continue to find it amazing that the boat is such a respite from “real” life. I suppose it’s because there’s not much physical I have to do—just drive—but I’m sitting, and holding on to a wheel, so the bumps aren’t really bumping as much as for other people on board, and the wind is rushing in my face (perhaps approximating running?), and there’s sun and glint and fresh air and water, and I have a connection with my dad, even though he died 15 years ago.
But, I am a little, um, blocked up. Last night I took some Senna, and today I’ve taken Colace and a large quaff of magnesium citrate (which claimed to be “pleasantly lemony” . . . but I’m not sure my idea of “pleasant” is the same). Ah, yes, the discomforts of treatment. I continue to be awed, a little, by the number of things I’m taking to make everything work “normally.” For example, I think I’m now up to these:
1. Radiation in the morning
2. Zofran to keep from throwing up from the potential swelling of the radiation
3. Dexamethazone to keep the swelling at a minimum
4. Keppra to keep from having seizures
5. Senna
6. Colace
7. and Magnesium, all three for my bowels.
8. Baby shampoo
9. and Eucerin, to keep my head skin as healthy as possible.
Ian and I are talking about designating a part of our house, growing larger all the time, for the “therapies”. Fortunately, our dining room table gets pretty big, so we should be able to come up with a workable solution.
I am noticing a bit of a slow-down on my brain function here, too. Nothing serious, and I still seem to be both better at short-term memory, and better at multitasking than Ian. It makes me happy.
I started my full brain radiation yesterday evening, and so far I’m okay. Ian heard me breathing loudly in the night, as if I couldn’t get enough oxygen (my oxygen levels are pretty low right now, because of the state of my lungs), but he poked me and I quieted, and he decided I had just been breathing loudly. He frequently breathes loudly and I poke him and he stops, so I simply welcomed him into the club this morning. Even
I had a headache when I got home last night, not surprisingly considering all the little lesions (tumors) in my brain, and that they’d swell just a little after being bombarded with rays. It had mostly passed when I woke up around
Yes, I am already experiencing side effects here (I realize I have not yet written my side effect post). Not just the slight headache, but I was exhausted when I came home yesterday around
Last night Ian and I lay in bed and imagined my brain fluid being released from the tumors and dripping, oh-so-slowly, through the small space that’s left at the base of my brain, at the site of my brain stem. There really isn’t a lot of space there, and that’s the place where serious things could happen. So taking a moment, or a few moments—whenever you think of it, really—to picture a small, slow release of fluid and tension, that would be great. I’d really appreciate it.
I’ve had some serious conversations with doctors in the last couple days, and I am glad that I’ve got both a regular will and a living will on file. I recommend you get these documents if you don’t have them already, because once things go badly, they can go very badly quickly. I have also been told, however, by several doctors, that they are a bit nonplussed by my appearance versus the appears of my innards. It may be simply that my outer appearance keeps me optimistic—after all, I look at my scans and I don’t know all the dire things they could mean, and so to a large extent they just look fascinating to me. Perhaps more than is healthy—they are quite impressive. Ian and I are going to try and get a CD of them so we can share the fascination.
Anyway, I’m being remarkably well taken care of. I like my doctors, nurses and techs (all 300 of them), and I’m suddenly extra relieved that I don’t have to be at a job, or tell a job I can’t come, or worry about whether or not the extra headaches will make my performance on the job worse, or anything like that.
Our lives are what they are supposed to be, after all.
Note: I want to apologize to people who are trying to post comments anonymously and are unable to. According to blogger, you may do so—I’ve looked behind the scenes to make sure—but it seems the last couple days that hasn’t worked. At any rate, I am happy to receive emails too.
So I had a meeting today with Jason Rockhill, MD PhD and family friend, and my mother, Marsh, and Ian. Jason is a straight talker, to the point, and doesn’t mince words if he has the option. I know that things are a bit more uncomfortable for him with me than with other patients, with all the family history. Also, I have been a hugely important resource to his parents—taking care of their 80+ acres, dogs and, most importantly, horses when they’re on vacation, and I know he feels at least a modicum of responsibility to keep their housekeeper alive and functional.
That said, I am in, straightly speaking, dire straits. The thing that makes most doctors the most nervous is the tumor in my lower brain, which is pressing on my spinal column. The spinal column keeps my lungs functioning, my organs pumping away, and my heart beating. If the spinal column gets too compressed, it can’t do those things, and I die. As we talked about at the ER on Wednesday night, a neurosurgery to remove that tumor was one way to deal with the extreme iffyness of that situation. However, since then the anesthesiologists have been contacted, and with the mass of disease in my lungs, they are worried that the mere fact of surgery at this time will greatly increase my chances of major complications. I.e. paralyzation, or death, up from 1-3% to 5-10%. Because of the lung disease, there’s a greater chance of blood issues, of breathing issues, of lots of things that I perhaps am just not remembering right now.
Of course, all the time, under treatment or not, as long as there are spots in my brain, I’m at risk of seizures. I am not to drive for the time being.
It seems that I have to start chemo ASAP, and I have to respond well to it, so I can get into surgery and deal with the brain. Of course we are hoping that I will, and we have past experience with this chemo, years ago, and it worked very well. But I can’t start without at least addressing, a little, the brain disease at this point, even if not at the level we would like to address it.
So what I’m doing this afternoon is starting a low-grade, full brain radiation treatment. I am going to have it 5 days in a row, even over the holiday weekend (no matter who has to come in and push the button on the machine). I am not to go to
First of all, let me thank, from the bottom of my strong, extremely functional, and well-performing heart, all of you who are taking time out from your busy days to read my blog, and send me your love and good wishes, either over the internet or energetically. I am truly amazed, gratified and humbled by your care. I cannot say enough how thankful I am. And, actually, how right I was about cancer. It’s all about love—here at home, at the SCCA, with my various other people, and today at the UW ER. Really, at the risk of going overboard (and I am feeling a bit tipsy from one of my drugs), I will say that I didn’t understand there was so much love in the world. Thank you.
So today I spent about 9 hours in the ER. For several of those hours, there was a good chance I was just going to be admitted to the hospital and watched, by a team of Radiation Oncologists and Neurosurgeons. But ultimately they decided surgery tomorrow wasn’t such a good idea, and let me go back home, with strict orders to TAKE MY DECADRON. Yes, Sirs, and one Ma’am.
My scan showed a total of 11 lesions in my brain, so I am loopier than normal. I knew I couldn’t tell. Of the 11 lesions, one is in the cerebellum, on the right tonsil, which hangs down at the base of the brain over the neck. This is the dangerous one. My brain is not hydrocephalic, so that’s good, but there is no room to move for this one lesion. Too much swelling, which I guess lesions are wont to do (plus they grow) and the brain stem is blocked off and that’s life threatening.
The discussions today were about the timing off the neurosurgery to remove the mass. It was originally going to be as early as tomorrow, because I’ll have to wait two or more weeks for the head to heal before I start radiation, which could take up to two weeks. And I have to finish radiation on the brain before I can start chemotherapy to clear up my lungs, because even at half capacity, my lungs are less of a threat to my life than my brain. We’re listening to a book on tape about a boy climbing Everest—from the Tibet side—and every time they talk about thin air and gasping and people dying and being really, really stupid from lack of oxygen even if you do make the summit, I feel myself going all incredulous and shocked. People do this for fun?!?
There are a lot of possible side effects associated with surgery and radiation and whatnot, but I think I won’t enumerate them here—I think I’ll just do a whole separate side effects posting. Western cancer treatment just has a lot of side effects, and a lot of drugs to treat those side effects, and a lot of drugs to treat the side effects of those side effects. When they were talking about admitting me today, I was given a list of something like 20 different things that I could ask for to go with my decadron throughout the night. Fortunately I’m home, where I only have about 5, and none of them are really elective right now.
I don't know if it's the decadron, or the lesion or what, but I was actually laughing today, mostly because this has gotten almost ridiculous. I mean, everyone who calls or talks to me puts on their serious "I have some grave news to share with you," voice, and says things like "your lungs are working at half-capacity," or "your bones have numerous spots of radioactive uptake," or "if you were 20 years older you'd be dead by now" or "your brain MRI worries me a lot and I need you to go to the ER today and have an expert look at it." I will say, everyone was duly impressed that I'm still alive, and that I have virtually no symptoms. I guess this is yet another reminder that I Don't Know Much. I've been irritated with my body for puking in the mornings, but actually it's been keeping me alive through something like Stage 100 cancer. I love my body. It's awesome.
Several years ago, I had a very bad morning (screaming at customer service, trouble with housework, late to my volunteer job), which culminated in the parking lot behind the Wallingford Tully's, with a bird shitting on my hand and purse. I burst out laughing--I mean, it was really too much--and the day improved immensely.
I don't know that my treatment or prognosis for the next several months will improve immensely just because I thought it was funny that I have a life-threatening brain tumor, but I really do feel okay. This is all part of the process, all part of the game. Thank you for joining me on the ride.
Turns out I have brain metastases as well, looks like at least six spots, and some down near my brain stem, which is seriously life-threatening if it swells at all. This is probably why I’ve been throwing up. So I’m heading off to the ER right now, to get started on some Decadron, which should reduce swelling. They will possibly admit me to the hospital, so I’m not sure how this blog will go for the next little bit. Dr. Specht doesn’t know if they’ll have me talk to a neurosurgeon or simply radiation oncologists at this point.
On the upside, my heart is perfectly strong and healthy.
Today I spent several hours at the clinic again, I think about 4 ½. My sister in law, K, took a day off work and came along with me. In case you are feeling that this was an overly generous gesture on her part, let me point out that in general she is a workaholic and she has something like three years of vacation saved up now. Nevertheless, it was generous to spend an unnecessary afternoon in the clinic, and I did appreciate it a lot.
One thing I noticed as I was getting my IV put in today, about medicine in general, at least in the
What reminds me about Vegas in this is the rampant extravagant disregard of resources. I have enjoyed my two trips to Vegas, but I’ve learned that I can only take about 2 ½ days. I can suspend my Northwest eco astoundedness for only about so long, then I start to worry about the lights and noise and air conditioning 24 hours a day, and where the power is coming from. I start to be appalled by the thousands of gallons of water evaporating into the desert air from the huge pools and fountains, the spray, the water and light shows. Before that, I can revel in the heat, the dryness, the flash and color. After 2 ½ days I need to return to the muted tones and gentle—natural—mist of my hometown.
I have no blame for anyone and their use of resources at the SCCA, but I do notice how much medical trash one person generates. Mostly, I am merely thankful that I’m living now, and going to the clinic now, at a time when we do seem to have unlimited supplies of tubing and hot dog-smelling stretch bandaging.
Anyway, my tests today included a blood draw (five different vials) to prep me for my Friday morning port placement, and an EKG, also for that. The EKG made me feel a bit like I was going to be jump started—the technician put ten sticky pads on me, and then hooked them all up with a spaghetti of cords and alligator clips, then turned on the machine. I felt nothing.
I then had a MUGA, which looks at how the heart is beating its beats, I think, rather than just that it is. This was merely a baseline, for before I start chemo, etc. One of my drugs, Herceptin, is supposed to be “cardiotoxic”. The woman doing the MUGA had to redo a scan to get a slightly different angle, since my heart itself appeared to be at a slightly unusual angle. “But that’s probably because you’re lean,” she said, and I thought “thank you!” The contrast in the MUGA is my own blood mixed with something radioactive, and then put back in my IV. They did extra checks to make sure I wasn’t getting anyone else’s blood.
The last test I had today was the brain MRI. Once or twice during the 40 minute procedure I thought “I could be scared about the outcome of this . . .” but honestly, I never was. I don’t know if that means my body knows my brain is fine, or if it means my body knows that whatever shows, the outcome will be fine. I mostly zone out, and sometimes nap when I’m having these tests (almost invariably they’re in a long, close tube or something similar), but that’s impossible in an MRI. I don’t know why the magnetic pulses are so noisy, but they sure are. And it’s not often a repetitive noise, so you can’t just get used to it. Occasionally, the noises are repetitive enough that I can start to hear the harmonics vibrating in my sinus bones, but usually not. But I can’t sleep, and I can’t even really think. I did notice today that my legs, resting on a wedge of foam, kept tensing up during the test. I kept having to consciously unwind the muscles. Also, there was one particular scan in the MRI, about a minute in length, that was so forceful my guts and ribs vibrated. That felt weird.
As usual, no results of anything today. I don’t have an appointment to hear results, so I’m assuming everything is on the current schedule—Friday port, Tuesday infusion—unless I hear otherwise.
My port gets re-placed on Friday morning. I have to be at the hospital (University of Washington Hospital) at
A port placement is a pretty minor surgery. Outpatient, local anesthetic, and something so that you don’t remember the procedure. It’s supposed to be uncomfortable to “breathe in, hold your breath” while they’re X-raying to check the location of the tube, but it’s not. I know this because seven years ago, when I had my first port installed, the drug that was supposed to make me forget (which actually sort of worked, because I sure can’t remember the name) kicked in too late. I remember the procedure—lying there in the OR, talking to the surgeon and assistants, breathing in, thankful for the sheet between my eyes and the cutting—but I had to be introduced to the post-op nurse multiple times.
When I had my port out last spring, I was alarmed to see the ancient surgeon shuffle into the room to meet me pre-op. But although his voice was old, Dr. Hickman’s hands were rock solid. And I assure you, I looked. Also, whoever administered the forgetting drug got the timing right and I remember nothing of the procedure, but everything about post-op—even seeing a young doctor I’d known as a child, and making Mom go to make sure (I was right).
I’ve been thinking a lot since last Thursday and the meeting with Dr. Specht. About a lot of things, like my physical well-being, my purpose in life, my feelings about death, my feelings about cancer.
On the physical side, not surprisingly, as soon as I returned home from the appointment where Dr. Specht told me I had bone metastases, I started to feel it. Suddenly my lower back hurt when it hadn’t before. Suddenly, the muscular ache in the top of my head, worse when I threw up every morning, became a part of the cancer and not just a result of intensive heaving. Suddenly my ribs began to bother me, and I realized that on the right side of my chest I was feeling pain like boob pain . . . but the boob was gone. Suddenly I felt a tightness in my lower left ab, where the ovary is.
I did start one prescription, for an anti-nausea pill, which is making me physically much happier. I have not thrown up for two mornings in a row, and I was able (and this was my goal) to enjoy a breakfast both mornings at the lovely Kingfish Inn in West Sound on
I’ve been wondering a lot, as well, about my purpose in life. I don’t have to work a traditional 9-5 office job. And yet, I haven’t turned into an artist, sharing my vision with the world. I did some freelance writing for awhile, and I was pretty good at it, at the level I was at, but it was a big pain in the ass and warranted not remotely enough compensation. Financial or otherwise. Editors don’t have time to praise you—they only have time to complain when you’ve done something they don’t like. And then you get your measly checks late. Anyway, there are obviously lots of other writing options . . . but I haven’t fulfilled those either. I also haven't donated all my time to charity work.
At a certain level in our society—a level my husband and I are pretty comfortably ensconced in—life meaning comes from what you do. It’s a question I have a hard time answering, and the last few days I’ve thought a lot about where my value comes from if not something I do. I’m not fishing for compliments here, or knee-jerk reactions from people—it’s a serious question I’m kicking around. Why, honestly why, keep me alive?
Which brings me to my feelings about death. I’m no longer scared of death itself. I don’t believe in Hell. I believe I’m going to find the next place pretty interesting. I believe I’ll get to meet people I’ve known here who have died, and maybe some people I’ve known on earth in other lifetimes. I believe a lot of things will make sense to me that I’m struggling with now—my perspective will be so much broader, so much more comprehensive.
However, I don’t want to die right now. I like the life I’m leading right now, with Ian and the dogs, and all the people I love around me. I like the challenge of finding my meaning, of recognizing my purpose, of increasing my perspective fraction by fraction. This world is beautiful and interesting, and I love living here, meeting new people, traveling, doing new things. I also love spending time with familiar people and familiar places, entrenching myself in a food or a culture I’ve come to embrace. I love my home. I want these things to continue, simply because I want them to continue.
Also, no matter how much I know they’ll miss me, I know eventually my friends will move on—will have parties where they don’t mention my name. Make new friends who will never have met me. And the thought of that makes me jealous, which isn’t perhaps a mature reason to stay alive, but it is certainly a real one.
And last, I’ve been thinking a lot about cancer and what it means to me. For one, I’ve never thought of myself as a cancer patient, further yet a cancer victim. In fact, I think of myself as healthy (although I’ve wondered a bit in the last couple weeks if I should maybe start to change that personal view). I don’t define myself by this disease. I don’t find life meaning in cancer support groups. I haven’t made new friends among the frighteningly increasing numbers of women my age who’ve had the same experiences. I find that peoples’ experiences with conflict are so individual, so unique, that I’ve never felt a draw to someone for the simple coincidence of our shared disease.
I am also starting to wonder about the language people use when talking about cancer. I don’t blame people at all for using warlike metaphors when talking about working through this disease, after all, I’ve “fought” it three times myself already, and I’ve referred to the people I see as my “arsenal”. I’m going to change that, though, because the fact is, I don’t believe any longer that I’m going to war here. I don’t believe I’m “fighting an enemy”. Yes, I am pursuing health, and balance, and full-body life and vitality . . . but I am not going to war.
We see cancer as a negative thing in this society . . . but I don’t even believe that anymore. First of all, it’s not uncommon. In fact, most people have some cancer or other in their lives, and most of the cancers are flushed out of the body by the immune system, without anyone even noticing. Also, in the last nine years, I have learned so much, gained so much perspective and strength, found so much love and support, discovered so much personal gratitude and humility, and learned a new awareness of joy and fulfillment in the world. I can only look at something that allows all those hugely positive things and see a positive force—a force for light. And so no, I’m not fighting.
Don’t get me wrong—I have not changed my mind in my path right now. I am not choosing, after all, to do nothing. I suspect that, in some ways, complete acceptance and complete non-response is the most enlightened route. But I am not choosing that path right now.
But I am also choosing not to go into battle. Instead, I am choosing to love my cancer, to be grateful for what it has taught me and, I hope, the people around me. I am choosing to look at my health in a different way from most of the people around me—the doctors, the friends, the relatives, the strangers who are supporting me—and see this as a challenge, yes, as a bump in the road, yes . . . but as a benefit I cannot even hope to understand the scope of at this stage.
That being said, one of the main things I am grateful for is the love and support I’m receiving from so many places. I love and cherish your support whether you believe I’m fighting for my life, negotiating a Class VI rapid, merely hitting a small patch of black ice and skidding a bit off course, or lucky to have such an opportunity for personal growth. Whether I’ve met you or not. Whether I’ve seen you in the last two hours, or closer to 20 years ago.
Several people asked what “numerous spots of uptake on my bones” meant. Yeah, that means cancer. It’s true, I didn’t have bone metastasis before, but it’s the same stuff as what’s in my lungs, and should respond the same way.
As of this morning, my next tests, the brain MRI, a MUGA for heart function, and an EKG, are scheduled for Tuesday afternoon. I assume they’ll just call me in for a short appt if I need to talk about the gamma knife more.
Yeah. So that wasn’t the joyful, “you’re free, it was all weird non-stuff” meeting we might have wished.
Turns out I can’t breathe all that well because my lungs are operating at, oh, probably about 50% capacity. The rest seems to be cancer. I would say that this is a situation where “half-empty” is the optimist’s choice.
Also, I now have numerous spots of uptake on my bones, including several in my ribs, and several vertebrae. Also my pelvis, both sides. Although the pelvis could be related to riding injuries.
Also, I seem to have a mass (felt by my acupuncturist the other day, although not by me) on my left ovary.
The good things are that my organs are functioning well, I have no pain (abdominal, lung, or bone, or really anywhere else although those are the biggies), and, as I think I said earlier, I look fabulous. Also, my neurological tests—“Walk on your toes, walk on your heels, follow my fingers with your eyes, push against my pressure,” etc etc, were all normal.
However, I do still need to get a brain MRI and see the state of my brain. It feels just normally loopy right now, but there are things I don’t know.
The brain MRI is important because if there’s been metastasis there as well, my treatment protocol will be different, and will include—get this—brain surgery. Yes, the gamma knife, a little radiation tool, would be the thing, operated by none other than Jason Rockhill, MD PhD, the son of my dear friends K&A in Idaho with the horses and the beautiful land.
As it is, if the brain MRI is normal, Dr Specht has recommended a rehash of what I had in 2001, the summer Ian and I got married. I’ll see if I can remember it all: Herceptin, Zoladex, Femara, Taxol, Navelbine, Pamidronate, Neupogen, Epogen. I think that’s it. I will lose all my hair again. And I mean all. I will have a port reinstalled next week, and start treatments the same day, pending the MRI. I am going to go back to several months of a weekly tie to an infusion room. And I don’t mean tea.
What is my prognosis now? Well, if I chose to do nothing, I would maybe be around until the end of the summer. Dr. Specht was pretty sure that, if I were 20 years older, I already wouldn’t be around, considering the spread of the disease. But I am young, and I am healthy. Also, if these chemicals don’t work, there are others to try. We are starting with these because it’s been seven years since my body was exposed to most of them and they worked so well, and so quickly, the last time. We are hoping for a repeat performance. Dr Specht will probably recommend Herceptin for the rest of my life . . . but that’s going to be a long time, and I’m not really prepared to deal with the idea of that right now.
How is this the moderate choice? I don’t know, really. I do intend to keep seeing the people I see, and keep up my arsenal of whole body health practitioners. But I also recognize that there are valuable contributions an oncologist can make to my health. I read once of a woman, an MD and spiritual healer, who was asked “How do you feel about medications, when they’re so unnatural?” and she said “God was in the lab when the researcher created those medications. They are as much a part of God as anything else in nature.”
And so, I am going to incorporate all parts of the Universe into my whole-body care. Starting now.
I’ve been sitting here today, writing in my personal journal about what I’m expecting from my appointment tomorrow, what I’m expecting from the next few months, what, indeed, I’m expecting from my life, based on what I know right now.
I am not from a family of moderates. My father, when he was discharged from the Air Force back in the ‘60s, where he’d played first chair French horn for four years, auditioned to be the conductor of an orchestra. It was down to him and another guy, and the other guy got the job. Dad decided music wasn’t for him, obviously, if someone else could get a job he thought he wanted, so he moved back to Renton and started working for his dad, as an auto mechanic.
My mother taught high school English. She believed her role as a teacher was an important one in the lives of her students, and she was an excellent teacher. She also lived on a small farm raising animals and vegetables (the minerals—huge rocks that bound up the rototiller every time we went to plant the garden—raised themselves) and two children. She probably worked 80 hours per week on her job, and added everything else on top. She eventually developed a habit of rising at
My brother struggles with extreme behavior in his own way.
For myself, I am aware that I’m in a constant balancing act. That is, in certain parts of my life, in certain situations, I am aware that I’m balancing my tendency to do things to extremes against a very real desire to enjoy lots of options without stressing myself out about any of them.
Of course, my health hasn’t always been one of those areas.
I have a goal for myself, for my life these days. My goal is to better integrate all the aspects of who I am into one whole. Most of my life, I lived very much in the mental/physical world. This is not to say that I wasn’t occasionally emotional about things—I was. But we didn’t, ultimately, have a hugely emotional household, and I do struggle now to make sure I am giving enough weight to how I feel about something. I was good in school, though, and I learned to do, with my body, pretty much anything I wanted to do. I wasn’t the most athletic kid, but I could ride and ski and swim; I could do some basic car maintenance; I could cook and weed. But anything that wasn’t tangible, I just didn’t believe existed. We weren’t a religious family nor (and I eventually started to understand the difference) a spiritual one.
Last year, with my second recurrence and my mastectomy, this changed. Last year, I suddenly started to be aware that there’s a lot more out there in the Universe, a lot more in us, too, than I had any idea about. And so, for the last several months, I’ve been reading a lot, and talking to a lot of experts, about the parts of being human that I didn’t realize were there.
What I haven’t been doing is actively applying moderation into my own life, even while my stated goal has been moderation. Instead, for the past year, I have been actively avoiding one valuable category of health assistance—allopathy. Sure, in part I didn’t feel the physical need until very recently. But the fact is, I haven’t had any check ups, including blood tests. I haven’t had my annual mammogram on my healthy breast—already seven months late. I haven’t even had a PAP.
I have spent the last year thinking “Western medicine=cancer.” And, I’ll probably find out tomorrow that that’s still true.
But . . . it’s not true. Western doctors save lives every day. And so I have no choice before me tomorrow but the difficult one—for moderation. To listen, with an open mind—and an open heart—to everything each of my people has to say to me. Each of them has spent years perfecting his or her skills. Each of them offers me knowledge, interest, experience that I cannot possibly hope to reproduce on my own. Each of them shares with me unspeakable personal value. But none of them is me, and only I can truly choose the options that are right for me. And only if I listen, with my whole being.
Yes, I could, theoretically, choose to be done. I could decide that it’s too inhumanizing, slogging into the clinic once a week and submitting to drip bags full of poisons. I could decide that my last year, of seeing different people and doing different things, was pointless. I could choose to give up, right now, accept that the end is close, and slowly wind down over the next few months until I simply die, riddled with the cancer that I thought wasn’t going to kill me.
Or I could choose, again theoretically, to give myself back over completely to the oncologists and the allopaths. I could decide that the lesson I learned this year was that I can’t, in fact, take care of myself. I could be back in the weekly infusion chair, chock-full of poisons, my ovaries removed, then off to the radiation oncologists for microwave zaps of radiation. I could choose to pick my authority—Western medicine—and meekly follow whatever it suggested.
I am not going to choose either of those paths. I don’t know what I will be offered tomorrow. I don’t know what the oncologist will say about my “prognosis”. But I am going to accept that she is another intelligent, thoughtful human being in my arsenal, who has my best interests—my life—at heart. I am going to trust that she has given her deepest attention to learning all she can about her chosen field. I am going to trust that she will share with me information that she believes, wholeheartedly, will benefit me the most.
And then I am going to choose.
I just got a call from Dr Specht’s nurse, asking me to be at the clinic at
For awhile now, I’ve been seeing a number of people for a number of reasons. In fact, the number has been high enough that I finally realized that’s what I do, like “what I do for a living” (although there are some significant problems with calling this “what I do for a living,” since I’m the one paying . . .). I must spend at least a part time job’s worth of hours driving back and forth and attending appointments each week. These people help me keep my mind and body healthy in a variety of ways, but I have to wonder: am I actually healthier than I would be if I didn’t see them? Or have I developed a body that’s only healthy when I include the manipulation of other people? Regardless, I am in the unique position to have some time and some money to support these alternative practitioners, and I am happy to do it. I do feel a great deal of benefit from my time seeing them or talking to them, and I know that other people will benefit from them as well. I am proud to help them out.
Here are the people I see (note: aside from allopaths, who I have not included in this list):
Christian Hunt, Licensed Acupuncturist, MAcOM. I began seeing Christian last fall after returning to
Bente Hansen, Energetic Healer, Channeler, Medical Intuitive, Reiki teacher, and more. I heard of Bente first last year, and in my first visit to her, for a clearing of my energetic field, I was already awed by her abilities. She had me lie on my back on a standard massage bed and she pushed her hands under my pelvis. After about a minute, a buzzing started up in my lower back over her hands, that continued as long as her hands were there. People joke about those little hand buzzers, and yeah, ha ha, but this was pure energy flowing into me. Bente is now in
Andrienne Wilson, Singer, Flutist, Teacher, Psychic. I have known Andrienne for several years. For the first few, she was merely (although “merely” is not a word one can really use for Andrienne) my jazz singing teacher. Then one day I had a tarot reading with her, and discovered her amazing psychic abilities. And then, of course, she gives incredible concerts at
Krista J Heron, ND, DHANP. Krista is a homeopath I’ve seen for only a short while. I like the idea of homeopathy—small amounts of a substance that set of a resonance in your body, bringing things back into health and balance. So far, we’re in the process of finding something that will work for me, both overall for general full-body health, and currently, for the symptoms I’m experiencing. We have not found it yet—I was still throwing up as of this morning. But I think we have more things to try.
Taya Countryman, LMP. I’ve known Taya for several years now. At first, her role in my life was primarily bodyworker—over the last couple decades of her work, she has developed a method for dealing with pain and structural strangenesses that is unusual and gifted. When I fell off a horse, she convinced bone, muscle, and connective tissue to go back where it belonged. When I had my mastectomy last year, she spent long hours doing scar massage afterwards, and I have complete range of motion now. Taya is also a psychic, and introduced me to parts of the world I didn’t know existed. And she has also become my friend.
I am looking for a general massage therapist, and am trying one out in a couple weeks, who comes highly recommended from both Taya and some other friends of mine. She's very popular, and I am very much looking forward to meeting her. I'll keep you posted.
In general, I also try to horseback ride twice per week (although the pesky breathing issue is keeping me from doing that at the moment), and at least once a month I visit the local Korean Spa for several hours of naked soaking and a hearty lunch of tasty Korean food. I also still, in general, attend one of Andrienne’s evening singing classes, and I’ve recently restarted Gyrotonic, to keep my core strength and flexibility going. Gyrotonic has the added benefit of being pretty low-impact, so I can still get a lot of benefit without getting too short of breath.
In all, I have no idea when I’d have a real job.
I just am. I’m annoyed that I’m still feeling like crap. I’m annoyed that I’m still throwing up in the mornings. I’m annoyed that I can’t walk with the dogs longer than about 4 blocks without breathing heavily and having to collapse on the couch when I return home. I’m annoyed that I’m going through this uncertainty YET AGAIN.
It’s a tedious sort of annoyance, the “
I’m annoyed.
I saw my acupuncturist yesterday, finally, for the first time for at least a month. I kept planning to go, then getting a sinus infection (note—a recognizable illness! Such a relief! Even though it sucked!), then having other tests or seeing other practitioners, or any number of other excuses. But I finally found an appointment time I could keep, and off I went to
Anyway, Christian really did it up. I don’t know which needles went where, per se, except that I had some in my feet and lower legs, some in my abs, and some very, very small ones lining my ribcage over my liver, but I felt better when I was done. I had the energy to go to the grocery store (miso and fruit sodas—things to restore my electrolyte balance; and various greens tablets—to make my body alkaline again because right now it’s very acidic), and I was even pretty lively last night. (Note: 27 Dresses is a bad movie.)
And this morning I threw up a lot less. I’m not sure what that means—I feel like I heaved and coughed just as much, but not much of anything came out (what did come out was yellow bile). And yet, I don’t feel less well that usual right now, as if, regardless, I purged what I needed to purge.
I have found that when my stomach feels better, there’s a lot I can still do that doesn’t seem to affect my lung capacity too much—housecleaning, gardening, cooking, laundry . . .
Wait. Do I really want to feel well to be a housewife?
Here's my arm, complete with the 4th, successful IV, and the nice radioactive injection I just got. The nurse is flushing with saline. Ah, all the familiar terms and experiences.
One of my friends texted me yesterday and asked when I would be done with my diagnostic tests this morning, which began at
“Lunch time?” I replied. “
I was optimistic. This time by about four hours.
A brief rundown: I’ve been throwing up bile every morning for about 7 weeks. I have visited my Witch Doctor (an NIS Master) religiously, and with his help diagnosed and cured a liver parasite (which arrived soon after our new puppy, Hoover . . . coincidence?), which allotted me 2 ½ weeks of freedom from the morning pukes; a liver virus; and he’s put several organs/glands back into synch with each other. Unfortunately, after the liver parasite was eradicated, the puking came back and hasn’t gone away. It’s not so bad after the morning, although in the last week or so I’ve started to feel less and less strong in the belly, even later in the day. Eventually even the Witch Doctor was at a loss, and recommended I see an MD for some bloodwork and maybe a scan or two.
About the time I went to see the MD, I also realized that I’d been getting, slowly but surely, shorter of breath with exertion (i.e. in my riding lessons, going up stairs). I’d recover quickly, but it was starting to seem that I wasn’t just out of shape, but rather might be harboring some greater problem.
I have been loath to see a Western doctor this year. Last year,
This is not fair to excellent GPs, emergency surgeons, and thousands of other doctors who are fine people, dedicated to their fields and their clients, and have nothing whatsoever to do with cancer most of the time. But there you have it.
Anyway, after the Witch Doctor—whom I trust very much—suggested I see an MD, I finally went. I found one who’d never met me before and therefore didn’t immediately see me under a file six inches thick, explained my symptoms—puking and short of breath—and asked what he’d suggest.
Not surprisingly, he suggested a chest X-ray, some bloodwork, and an abdomen ultrasound. The ultrasound was the only part of this that I could interact with at all during the test, so I watched the screen while the technician took her pictures and made her measurements. I was particularly avid to see what was up on the right side of my body where my liver is, considering the diagnoses of parasites and viruses and the bile vomits, so when she got there I really started to concentrate. Suddenly a black dot came into view. She took a picture. She moved her wand, saw a slightly different and larger angle of the black mass, and took another pictures. She did this three or four times, and I found myself becoming more and more nervous. Then she pulled out her electronic measurement tool and took a width. My heart stopped as she clicked a couple more buttons, then up on the screen came a text box labeled “kidney”.
Oh. Yeah, we have those. I stopped watching, and turned my face to the wall. Clearly, I am not a radiologist.
Well, the abdomen ultrasound turned out to be absolutely normal. Nothing was large, nothing was distended, nothing had a valve blocked open or closed, nothing was out of place.
The chest X-ray, on the other hand. showed numerous pulmonary nodules. Now, pulmonary nodules can come from a variety of places. An infection, a virus, pneumonia, tuberculosis, etc. Not things you want, naturally. But nodules can also come from metastasized breast cancer, and that, of course, even though I didn’t come in under the weight of my 6-inch file, was the first thing this MD thought. I don’t blame him—if there’s anything I’ve discovered about dealing with cancer, off and on for 9 years, it’s that it’s scary. Everyone thinks it’s scary. People who love you, people who hardly know you, doctors, nurses, techs. If you choose not to be scared by it, you have a battle set up for yourself. If you choose to think it’s a challenge, a lesson, maybe even a serious unpleasantness, but not terror, then you have to be prepared to be strong, and different.
Hence the tests I was taking this morning, which I misjudged so much in length. They included chest and abdomen CTs, a huge blood draw, and a bone scan . . . back at the SCCA. Which I'd thought I was done with.
In part, we arrived slightly later than
When I came out, Ian was there, and he led me back to the blood draw/IV/injection room, where I got to sit in a comfortable lounge chair and someone found a hard plastic folder for him. I then sat as one person tried two times to find a vein in my arm, another person tried one time, and they finally called someone in who finds deep veins with an ultrasound machine. She was successful (well, I was a little dehydrated). While this was going on, I talked to the first guy about puking in the mornings, and being a bit nervous about the effects of the barium (chalky, non-digestible, usually flavored something like “banana”) on my digestive system. Well, it turns out there’s another option, that doesn’t make quite the same quality of pictures, but does work, and they mix it with juice. I chose apple. Oh my god, what a relief. The apple juice also seemed enough like food that my stomach quieted down a bit, and I was able to get my CTs, and indeed do everything else for the day, with everything staying as it should.
Since it took so long to get my IV in, however, my bone scan ended up being delayed until
But, I’m home now, and made it here by
Sure.
