Tuesday, October 30, 2012

Crap. About. CyberKnife.

Crows talking
I got a bummer email from Dr. N (though I am glad to have the info!)
You have too many lesions for cyberknife to be a good option... Cyberknife or radiation might be a good option, though, if you have one or two lesions that are growing faster than the others AND causing symptoms, as the symptoms could be helped. Sometimes treating the symptom might improve survival (ie: if a person is bleeding and the bleeding is controlled the person might live longer than they would have). 
The reason I stated that focused radiation is unlikely to improve survival in your case, at this time, is that if all lesions cannot be treated, there is no data to suggest you would live longer since the underlying problem with cancer spread/growth is not being completely managed. In general terms, we think of local treatment with cyberknife or surgery, to a limited number of visible lung or liver metastasis from a cancer, to potentially allow people to liver longer if all sites of limited measurable disease can be effectively treated. If all sites cannot be treated, or new sites are developing over relatively short intervals of time, the local treatment does not seem to change how long a person lives (again, unless there is a life-threatening symptom that is being controlled). The x-ray may look better, but it is the fact that there are lots of other cancer cells growing that ultimately determines survival... 
Front yard, San Carlos, Ca
I don't feel like I can do chemotherapy again, especially when it seems so unlikely to work. Must try not to fill in the blanks about what will happen or what I will do. That will be my practice for the next month. Plus dealing with the waning symptoms:
  • Alopecia (I may have already mentioned this).
  • Numb feet & mildly numb face. 
  • Insomnia. 
  • Troublesome digestion. 
  • Fatigue.
OK, I mean it this time, my last post for a while...Hasta luego. xox

Sunday, October 28, 2012

Hasta la vista, baby

This may be my last post for a couple of weeks. I leave for Mexico on Tuesday after I sort out all my medications, herbs, vitamins, head coverings, sunscreen, and eyebrow constituents.

Time in Mex is roughly:
  • A day or so at Lena's, then the retreat (Nov 1-9).
  • Tourism with Padmatara and Dawn for the weekend.
  • A week of hopefully working on my book. 
  • Fly back to parents' two days before Thanksgiving (Nov 20), and drive home at some point.
I drove down here to The OC yesterday while listening to Wicked (although tape #11, which is when she meets Dorothy at last, was tragically broken) and then to Patti Smith's memoir about her life with Robert Mapplethorpe, Just Kids. I was surprised by Patti Smith's midwestern accent. For example, 'drawling' and 'mira' for drawing and mirror. The seven hour drive south - only stopped once - flew by.

It's nice to visit my dad and Chris in this big house. Among other things, they are out of touch with popular culture in different ways than I am.

Here's the note I just sent to Dr. Nelson.
Hi Dr. Nelson,
At this point the best option seems to me to be CyberKnife, largely because ANY chemotherapy I might get seems to be a serious craps shoot as it were. I'm just gleaning info from the internet but I haven't come across any obvious contraindications for CK. It's also specially suited to lung tumors. If I remember correctly you spoke of it in terms of symptom control rather than survival (& I'll ask why when I see you!)
I don't have a December appointment with you yet and I won't be available by phone 10/30-11/20 (will have intermittent internet access tho'.)
Cheers, Suvanna
P.S. I noticed that on the CT scan report it incorrectly says I have vulvar cancer.
P.P.S. I looked around for clinical trials and found nothing!... I heard that my step-sister (lecturer at UCSD medical school) also did some research and found nothing...in any case I have to say I am not feeling enthused about chemotherapy.
Secure emails to Kaiser doctors have to be less than 1,000 characters. Understandable, but difficult. It's been three weeks + 1 day since my last chemotherapy. And for the last two nights I have been able to sleep, no problem. Yay! My feet are still numb (maybe a bit less), my hair is still falling out, and there are various other issues. Boooo! I'd love not to have any more chemotherapy.

The "view" driving from NoCal to SoCal
including window reflections
An email I got this morning:
We have all heard of the stories of people with cancer being grateful that they have been able to focus on what is important. I read in your blog of a friend who commended you on your attitude while having cancer. The problem is that before you had cancer, you were already able to have a more positive attitude in the worst of times than anyone I've known. You didn't need cancer for that because you already had that. Maybe you see internal growth. What I see is the strengths you already had serving you well. That is my view from the cheap seats.
I like the last line. I hope my posting these complimentary emails don't seem too much like I'm blowing my own horn. Anyway aside from horn blowing...I'm noticing some things about my psychology. Like how often when someone helps me in some way, I get a vague feeling that I am taking advantage of them...a very strong need to feel independent, perhaps invulnerable. I often have a positive attitude as my friend above says. It's also true that when I don't, I feel that I should. Seems to be hard for me to accept my own sadness.

Thursday, October 25, 2012

Dr. Nelson meeting Part 2, Misha, Carol, CyberKnife

If you're not interested in every little detail, you might want to skip this post.

Confession: took this photo while driving...
A little more about the meeting with Dr. Nelson. As did Dr. Tavakoli, she seemed to panic a bit when she saw I had two pals with me. I think they expect to be detained by random inane questions. The first thing she said was that she had spent quite a lot of time with me before but this time she only had twenty minutes, she had a meeting to go to, but then she stayed for forty. Why don't doctors just know that my friends are cool?

Dr. Nelson mentioned, in passing, "CyberKnife" treatment. (SO glad for the recording, would not have remembered it!) It's super precise radiation (and seems to be offered by Kaiser, at Oyster Point). According to the CyberKnife website:
The CyberKnife Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and non-cancerous tumors anywhere in the body, including the prostate, lung, brain, spine, liver, pancreas and kidney. The treatment – which delivers beams of high dose radiation to tumors with extreme accuracy – offers new hope to patients worldwide...It provides a pain-free, non-surgical option for patients who have inoperable or surgically complex tumors, or who may be looking for an alternative to surgery.
I am starting to look for clinical trials. Most of them seem to be for chemos, which I am not at all enthused about. At this point radiation (CyberKnife) seems much more promising, since radiation worked so well already, and chemo, for me, is such a crap shoot. I'm going to see what people say about Cyberknife on the online cancer forums.

Dr. N. also mentioned: CPT-11, HER2 (Human Epidermal Growth Factor Receptor 2), and heregulin. I think these are more about researching what chemos might work with my condition ('markers'?)

Misha & Juice fasting:
I told Misha I'd gotten discouraged and wasn't taking the herbs as much. She said the herbs might be the reason the nodules are growing slowly.
I asked her what she thought about me doing a juice fast. She said for 90% of her patients she would say no, but for me she thinks it'd be all right. (It's because my condition according to Traditional Chinese Medicine involves 'excess' and 'heat' whereas most people are 'deficient' and 'cold'. Raw vegetables are cold.) The juice fast retreat place, in LA, doesn't have any room until late January.

She suggested I consider consulting with Keith Block at his Center for Integrative Medicine near Chicago. Not psyched about that just because it will be very expensive and don't feel confident that it would help. At least from the Western medical point of view it's treatment for my specific cancer that is the mystery and presumably he doesn't know any more about that than my oncologist does. He might know some general things that could be helpful. Just not sure I need to go to Chicago for that. Anyway Misha said she's going to think about some options and email them to me.

Carol G. - Palliative Care:
It was a very good meeting today, very interesting. However, I don't have the energy to write it all up. I will say that she described the 'marker' mystery as genetic markers that can suggest or predict someone's response to a particular chemotherapy. (That it won't work at all, or which ones might be better for a particular person.)

Online forums:
...Though it was not my plan, I've been reading online forums for hours. I picked up more of the 411 about scans: CT scans do 1 mm slices, whereas PET/CT scans do 5 mm slices. Almost everything folks who had experienced CyberKnife had to say about it was positive. One woman mentioned there were 'the usual' side effects but she didn't say what they were. One guy said the only side effect he had was fatigue, for example taking a three hour nap afterwards, that it is a breeze compared to chemotherapy. Many people live in places they can't get it, and apparently some insurance won't pay for it. There was some detailed info on how to force your insurance company to pay for it. They implant gold thingies that help the machine with navigation. Then the radiation gets delivered from all these different angles, I think that's why surrounding tissue isn't damaged. Sounds like the usual program is daily for 5 days in a row. When radiation is being delivered to lungs, the beam locks onto the tumor and moves with your breathing. Cool. You can see patient testimonies on youtube. Seems too good to be true...

Wednesday, October 24, 2012

(A Bit) Better news

Among instruments, waiting for Dr. N. to appear.
Photo by Padmatara.
Definitely went beyond the three-things-a-day rule today. Chapter meeting, met with Dr. Nelson for about 40 minutes with Padmatara and Danamaya, who then dropped me off at Misha's. Talked to her a bit and got a treatment, had a skype meeting, and another skype call with Cull and Laura, who is visiting Singapore at the moment.

It was great talking to Dr. Nelson. I was figuring she'd want to dose me up on chemotherapy as soon as possible, maybe in December. That's what my bad case scenarios were all about. Fact is, she has no idea what kind of chemotherapy to give me, I don't have any actual cancer symptoms yet, and anyway she knows the importance of breaks. She says that no one knows or has anything definite on what will work for my type of cancer.

As I have been told since Day 1, I have a very rare type of cancer, about which data is scarce.* My treatments so far have been based on similar gynecological cancers - uterine, ovarian, or cervical - which are also adenocarcinomas (same cell type). She explained to me how the chemotherapy Carbotaxol I just got made sense for me, something about "platinum sensitive" gyn cancers. It brought home to me just how much of an educated guessing game all this is for the oncologists. She also said that, at the time of my original treatment back in January, I probably already had micro metastases in my lungs.

She's going to take the time I'm in Mexico to figure something out. I could barely understand what she was saying about that. Something about doing various tests on the original tissue from the biopsy, looking for 'markers'... Padmatara recorded most of the convo which was very handy in writing this, but I am too tired right now to listen to the specifics about the kind of research she will do. Listening to the recording again really helps in general though. Oncologists seem to talk fast. However Danamaya commented about what a good doctor and communicator she is, so I am glad I switched from Tavakoli who (though he was amusing) seemed to base my treatment entirely on studies, which are very general and seem to involve constant drugs.

As to the condition of my lungs: while the nodules have grown and there are more of them, they are all still very small and seem to be growing slowly. There are 3-4 nodules that are very small, and 3-4 that are easy to see. The 8-10 nodules I talked about before were I think Dr. Littel's guess; the scan reports, which are written by other doctors (radiologists), never gave a total detected number. Presumably before the current development there were 4-6 nodules total, and now there are 6-8.

She showed me these two CT scans - a cross section, looking up as it were from my feet. The left scan is from May, and right is from a week or so ago (mid-October.) As you can see, in five or six months the width of a nodule in my left lung grew about 3.1 mm, or 1/10 of an inch. This is one of the bigger ones. Dr. Nelson said, "There is a huge amount of normal lung."

So this is a slow-growing cancer. (Misha says slow growing cancers are more resistant to chemotherapy. Need to ask about that.) What is a fast-growing cancer? The size of a small-cell lung cancer tumor could double in two weeks.

I had thought that it wouldn't be possible for me to get radiation again, but apparently that depends on the body part. For the lungs it would be fine, though she spoke of it in terms of "symptom control" rather than survival. If one nodule, for example, started growing more quickly and causing symptoms. Symptoms to look out for: shortness of breath, a cough, fatigue, or weight loss. I remember a main complaint back in November of last year, when I first was moved to go to a doctor, was fatigue.

I will get an x-ray in early December. (Apparently x-rays expose you to 1/1000 the radiation of a CT scan.) What about travel? Depends on how I feel. She suggested getting a flight to Sing. with a flexible return date in case symptoms start appearing.

She will be looking for clinical trials for new drugs, and suggested I look around as well (for example, at clinicaltrials.gov, and NCI), which I am motivated to do. Kaiser will cover costs of participating in U.S. based Phase 2 trials. (Phase 1 just determines dosage.) She suggested choosing a location near a support system. My initial search showed that most questionnaires require one to choose the cancer type, and my cancer type is not one of the options.

More tomorrow. Tired.

Listening to my talk a few days ago completely changed my attitude! I still don't know what's going to happen. I can still enjoy my life...A friend wrote this morning, "I just listened to your talk; fucking unbelievable - you are unbelievable. So great and I think I never heard anyone talking about it like that. So inspirational. Thank you." Cool!

* I still have a rare gynecological cancer even though it's now in my lungs. That's how it works when a primary cancer metastasizes. For example, a lady in the last support group I went to had breast cancer that  metastasizes into her colon. So she does not have colon cancer; she has metastatic breast cancer in her colon. It's important because they have to focus on and treat the original cell type. After metastases, location is a secondary concern. 

Tuesday, October 23, 2012

Random thoughts & questions

View from East Bay
I look in the mirror today and see the skin of Tommy Lee Jones.

What's the difference between a nodule and a tumor? They're both abnormal swellings. A nodule is smaller. Nodus in Latin means 'knot'. Tumere means 'to swell.'

Note that it takes me a couple of days to finish posts sometimes, so when I say 'today' or 'yesterday', it may be...anachronistic.

Jules came up last night and we watched two good movies: The Dictator, very funny, and Senna, an excellent sweet documentary about the Brazilian race car driver Ayrton Senna.

I want to visit Brazil. Egypt. Norway. Continents. Or do I?

What about alternative treatments? Two weeks of veg. juice and wheat grass in Mexico? An Ayurvedic retreat in India?...Or what?

My bucket list (what is important) - What is on it?

Here's what Tenzin Palmo, who did a 12-year solitary retreat in a cave near a Tibetan village, said in an interview about my two best friends/foes, Hope and Fear:
I remember one spring when the snow melted and the cave became completely flooded and soaking wet. I also had a cold. I was feeling extremely not well, and I was thinking, "They're right what they said about living in caves. Who wants to live in this horrible wet place!" I was feeling horrible, it was cold and miserable and still snowing. And then I suddenly thought, "Are you still looking for happiness in samsara? Didn't [the] Buddha say something about dukkha, suffering?" And when I thought that, I suddenly thought, "Yes, it doesn't matter, it really doesn't matter. Samsara is dukkha so it's fine, there's no problem. Why expect happiness ? If happiness is there, happiness is there; if happiness isn't there, what do you expect anyway? It really doesn't matter!" When I felt that - it was something not just in the head at all, it was really in my heart - this whole weight just went away: hope and fear. We're always hoping that everything will be pleasant somehow, we're always fearing that it won't be. And in that moment the whole thing dropped away, and it just didn't matter. This was an enormous relief...
Mosaic at Powell St. BART station
I've been noticing that I am not experiencing that relief. My mind cycles through 'realistic' hope- or fear-induced scenarios and plans, creating suffering for itself. (On days like this, Sartre's comment, Hell is other people, seems completely insane.) The wheel spins another time and lands on Uncertainty, which in its pure state can be a great relief. Or it sinks its teeth into my lungs.

being well (even when you're sick) teaches MBSR (Mindfulness Based Stress Reduction) specifically for people with cancer. I found some of it boring, some of it good. I like the stories about the author's own life dealing with cancer. In general, I can dig a good cancer memoir. It's like being in a support group, only more entertaining and maybe not as useful in terms of practical information.

Clandestine shot of woman with crazy hat.
When she got off the train she wore a backpack
shaped like a turtle shell
I think I will go to Mexico (Oct 30.) There is an eight day retreat - for women who've requested ordination - on the theme of the "Mythic Context." If it were any other theme, I don't think I would go, but that one is right up my street.

I went for a three or so mile walk with Tong in Tilden Park. It was beautiful. It felt good to walk on dirt rather than cement, but toward the end my toes got very numb (was tripping a lot) and I got very tired. Same thing happened today with Lisa at Lands End. Before that she helped me do some errands, which was awesome.

Summary: my mind has been flying all over the place. Tonight I listened to the talk I gave at the GBF and felt at peace with it all.

Friday, October 19, 2012

Rather shocking, plus voting

As a friend excellently summed it up in an email today, Shit that blows.

Everyone seems to be surprised. Not least of all, my oncologist and I. (If you don't know what I'm talking about, please see previous blog post.)

How do I want to spend my time? Will I go to Mexico on October 30? It's all up in the air now. I'll decide by Tuesday when I talk to the doc.

I heart Halloween
I'm assuming that chemotherapy is what western medicine will have to offer at this point, which is crap. Well, if it works it's not crap. Mine seems not to have had any effect at all. Come to think of it, what my body responded to so well in the first round of treatment was radiation (chemotherapy aspect was minor). I'll find out a lot more on Tuesday.

At this point the prospects seem dire. It now seems much more likely that cancer and chemotherapy are permanent (as it were) parts of my life. Which, as already articulated, blows. Presumably I'll get used to the idea as I have everything else? Not sure about that. I'm remembering Rene the social worker at South San Francisco talking about someone who had lived for ten years with some kind of advanced stage gynecological cancer. And been on chemotherapy the whole time. Yuck.

I figured the reason I've been so tired and cravey is because of the chemotherapy. But in light of current info, I think back to December of last year when I was first diagnosed, I was having crushing sugar cravings, and a lot of fatigue. That was because of cancer. Maybe this time, too. Maybe it seems fairly normal to have sugar cravings, everyone has them. But these cravings are more intense than any others I have experienced in my life. It's noticeably different. It's also true that it might not be related to cancer, who knows. Could just be related to fatigue, which also may or may not be related to cancer.


I hosted a 'voting salon' last night, a few hours after I got the news. I almost canceled it. Eight of us figured out the state propositions and local measures. I thoroughly enjoyed focusing on non-cancer-related subjects for a couple of hours! For those of you in the US, we referenced The Bay Guardian and these two websites in our discussions of State Propositions:
Summary of progressive org endorsements
Summary of CA newspaper endorsements

Here's what most of us settled on:

30- Y
31 - N
32 - N
33 - N
34 - undecided (because of Jarvis Masters)
35 - N
36 - Y
37 - Y
38 - N
39, 40 - Y

All Yes, except F.

Bad news

My pt of view, drawn before I got 
this news (on white paper, 
don't know why it photo'ed orange)
I wrote to Dr. Nelson asking about the results of my CT scan. She replied:

Ms. Cullen -

I was surprised by the results of your CT as you have been doing so well. Unfortunately, the CT suggests some of the nodules are larger and that there are a few new nodules. The report is attached for your review and I will given you a paper copy when we meet next week.

I do not think this should prompt you to change your upcoming trip in October/November. We can discuss the pros/cons of travel in December/January when we meet.

- Amy Nelson, M.D.


** HISTORY **:
Metastatic vulvar cancer to lungs, followup

Comparison: 03/28/2012 and PET CT dated 8/16/2012

Technique: Axial images of the chest were obtained with
administration of 100 cc of Visipaque 320.

CTDI: 21 mGy
DLP: 683 mGy-cm

In comparison to PET/CT dated 8/16/2012 there is interval increase
in size and number of bilateral pulmonary nodules. 1.6 x 2 cm left
apical mass previously measured 1.5 x 9 mm on PET/CT. 7.5 x 7 mm
superior segment right lower lobe nodule, previously measured 5
mm. Left basilar 11 x 13 mm nodule was not seen on recent PET/CT.
7 mm right middle lobe nodule was not seen on prior exam.

No hilar, mediastinal or axillary lymphadenopathy. Heart size is
within normal limits. No pericardial or pleural effusions.

No aggressive osseous lesions are seen.

Evaluation of the upper abdomen demonstrates gallstones.

Increased size and number of pulmonary nodules, compatible with

Although it seems somewhat irrelevant at the moment:

The last few days my insomnia has kicked in again. Last night I fell asleep at around midnight, but only stayed asleep for around half an hour, then stayed awake until about 3 am. Into the wee hours, watching The Office (UK), Dr. Who (which I'm not sure I even like anymore), Battlestar Gallactica, and Peep Show. I am too tired to do anything but some walking.

Down to two eyelashes on my right eye.

Shaman II

Birth at Balmy Alley
A couple of weeks ago I went to see my friend Alan who is a shaman. Alan had said some things last time I saw him (June) that didn't sit well with me, about various things including what caused the cancer that I have. This is one of the things I followed up with him about and we had a great talk for about an hour and half. Alan has no interest in or faith in (or much knowledge of) science, genetics, etc. He said his views are what allows him to do the work he does. It's interesting how different people have a 'science' or 'spiritual' orientation. I think I have a combination of both. I think there are purely physical/biological causes to things, and there are also mental or karmic causes. It is difficult to determine causes, but I try to get all the types of conditions working in my favor!

I shared with him that it's a bit confusing to go to someone who is against chemotherapy in some way. The acupuncturist I went to before Misha was like that. She seemed to think chemo is more likely to kill you than anything else. That's the thing that's so great about Misha. She really understands what Western doctors do for people with cancer and how to support that process.

I have a lot of respect for Alan in his vocation as a healer. Last time I saw him I was more motivated me to 'pick up the ball' again and be more careful about what I eat. He has been very kind and supportive of me.

This time, and last time, he guided me through a relaxation/visualization & emailed the recording to me. I left feeling gratitude and very deeply relaxed.

Wednesday, October 17, 2012

Symptoms / Nadir

What fatigue looks like, 8:30pm 
Very tired today. Stayed in bed much of the day but managed a walk to Whole Foods in Snowy Valley to give my regular donation. According to Google maps it's 1.8 miles roundtrip.

A sore in my mouth on the left, the problematic side of my facial symmetry, which is also numb off and on.

Numb feet, but stabbing pains seem to have gone away.

Sacrum/hip joints very sore, possibly from pilates class Friday.

And that's about it, not too bad.

I wish I had more philosophy for you. Today I was reading more of Turning Suffering Inside Out, an excellent Dharma book about suffering. Here is a section I post-it'ed:
From my experience with my own body and from observing other people I teach, I have come to believe that there is some biochemical concomitant of active, conscious, deliberate attempts to heal ourselves, beginning with relaxation techniques that seem to enable us to pick up the body's signals through the garble of goal-oriented thoughts and panic over our condition. 
Which seems a bit complicated. I guess what's she's saying is that (she believes) conscious attempts at self-healing, which begin with relaxation, are followed by physical healing.

Lungs getting scanned tomorrow.

P.S. I looked it up and I am in the 'nadir' part of the chemo cycle. Amen.

Tuesday, October 16, 2012

Hold your breath for nothing

OMG I felt great today. My feet are still a bit numb, but who cares. It's because I  have decided to stop waiting. There is nothing to wait for. And no one to wait for it. Yeah! I have broken the cycle of the end-of-treatment blues. On October 23, a Tuesday, at 11:30am, I'll find out the results of my scan. It will be one milestone in the series of cancer-related milestones that structure the current configuration of my life. But one cannot hold one's breath for milestones. There is too much missed, even when nothing is happening.

Cancer gives me lessons, all of which apply to regular life, too. It's just that they have been forced on me, because uncertainty, impermanence, and death, dropped out of theory into reality. Like the folks learning to meditate to reduce stress vs. the folks learning to meditate because they are in jail, or a doctor has told them their life is pretty much over. And there are also smaller deaths...Like one's identity as a healthy person. Like the sense of oneself as productive. Like whoever you are when you have hair, you're someone else, kind of, without it. Like the unconscious assumption that things as they are right now - health, or sickness - last forever.

I had a chat today with Carol Gerstein, who is a social worker in palliative care. Basically for dying people, part of an advanced illness coordinated care program, which I qualify for, because of my staging (Stage 4.) I felt so happy, I was sorry not to feel worse when I spoke to her, give her something to do. But it was cool. She helps people with a lot of different things. She had an interesting take on 'the bucket list': What is important to me? She helps with planning around what is important. And ways to make difficult decisions, and communicate about them. Awesome.

I think a lot of the trouble I have had came from not being able to sleep. I took two wonderul naps over the weekend, something I haven't been able to do in what feels like a very long time. I'm convinced that taking anything in order to sleep wrecks my day, but I don't know if it wrecks my day more than not sleeping does. And this is mostly about non-prescription sleep aids. Anyway I've cut way down on the pills in general. Sadly this meant I stopped using the estrogen patch, so now the world is boiling hot again, bummer. I started using it again over a week ago but the temperature remains tropical.

Arbitrary points

Robin made me a yummy quiche packed with veg. Helen brought me some excellent risotto. Bless their cotton socks.

It's funny how often I hear people say antidote when they mean anecdote. Probably not that often...but more than once.

A postscript to my post about what to buy your friend the cancer patient, entitled Navigating a shitty mood: If you buy a Sleek Turban for your pal with cancer, start with buying one in a plain color that will match the colors she tends to wear, and see if it works for her. The problem with wigs and hats is they all seem to be created with room for hair in them, so if you don't have hair there's extra space, or they're droopy. Point being that the Sleek Turban might not work for someone with a head smaller than mine. Or you could get 'em something to fill in the empty space with. I have no idea how people do that, but no doubt there's some kind of gadget.

I'm reading The Giver by Lois Lowry. (Young Adult fiction, it's very good.) I just picked up The Hunger Fix, by Pam Peeke MD. I think I found these books on the NY Times bestseller list.

Sunday, October 14, 2012

Navigating a shitty mood

A mermaid painted on a wall outside an abandoned grocery store
sits in the shadow of a shopping cart
Some things occurred to me as I walked up 24th street this evening, watching the sky turn pink. It occurred to me that I've been complaining more lately, generally with a shittier attitude. This is somehow linked to waiting, frustration with waiting, with being in limbo land.

It further occurred to me that there is nothing to wait for. Because the scan I will get only provides temporary information. In that way, it is like all information. Any information one gets sheds light on now. This is one of the slow lessons of cancer. Slow for me anyway. There's very little in the way of certainty, of 0's and 1's. I had breakfast at Radish with Anushka this morning, who reminded me of this. The info you get doesn't last. Cancer is sneaky and subtle, as are lots of other conditions of life.

People have different responses to me complaining. Most people are thinking - whether they actually say it or not:
Yeah, you have fucking cancer, you're damn right you're complaining, because cancer SUCKS and you shouldn't have gotten it. I should have gotten it because I am a sickly bastard who does not take care of him- or her-self. But you're the one who got it, and you've had TWO rounds of treatment, you still don't know what your status is, and all that SUCKS. OF COURSE you're sick of it. 
Others don't seem to be interested in my complaints. Strangely, when people are sympathetic, I don't notice as much that I am complaining.

It seems to me that there is no point in primarily waiting. What can we ever really know? Why resent this moment for not being an imaginary later moment?

I talked to Trebor this morning who is living with his family in Berlin for a year.  I'm sorry I haven't seen his little girls in such a long time. Rosa turned five today  and the other, Emma, is one. One thing we talked about is how sometimes you can realize that you're in ideal conditions, and that the grousing is not really about external things.

Different subject - what to recommend or get for your female pals with cancer

As I might have mentioned, most headgear for cancer patients is ugly. I got the "sleek turban" shown, but in dark blue, from Jazz Up Designer Headwear. It's cute. I tried to take some pictures of mine but they were all crap. (Admittedly I didn't put a lot of effort into the photos. Sitting on my bed in the bad light taking my picture with one hand...)

For cute wigs, go to Natural Beauty Salon, 105 W. Portal Avenue. If you have cancer you can get one free - set it up with the American Cancer Society first.

I miss my hair, and am looking forward to its return, though I probably have at least another month before it even starts. All kindsa crap is getting into my eyes and nose because I lack the hair shield. Hair is awesome. Chairish it.
As Kool and the Gang advised: 
Cherish the hair we have,
We should cherish the hair we live,
Cherish the hair, cherish the hair...

Friday, October 12, 2012

An optimistic thought

Today instead of counting my eyelashes, I thought, Wow, I don't have a moustache to deal with, cool. Or toe hair, for that matter.

I managed to go to Jane's pilates/cancer class this morning. Later I had a reike (pronounced RAY-kee) session from Tania. It was great, very similar to how I feel when I'm resting with the needles at Misha's, or doing a body scan. (If you don't know what a body scan is, here is an MP3 of me leading one.)

What is healing? Who knows. But there's something about a deeply nourishing rest that seems to be part of it.

I have several small sores on my skin - on my head and hands and random places. They don't hurt.

Thursday, October 11, 2012

What is truly prognostic*

Today Misha asked, as she usually does, what day (since chemo) it is. It's Day 7. Honestly, I thought it was around Day 400. Laura only left a few days ago. It's only been a week since I had chemo. Perhaps another week and I'll be ship-shape. Or not. But for a few days my suffering seemed to be eternal.

Anyway, she suggested peach kernel pills, which immediately solved my digestive problem. She also suggested I see her twice next week if the suffering does not abate, which I will do.

On Oct 18, at 11am, I will have a chest CT scan. I'll find out, again, whether the treatment worked, for a particular area of my body. The next scan will be a full body PET scan around four months later. Regarding the whole optimism/ pessimism issue: Since no matter what this scan shows, it doesn't mean anything about forever, or even the next six months, the significance of it has waned, in my mind. It's just another step. What's truly predictive are all the scans I get in the next 5-10 years.

After we got back from Misha's, Nancy and I went into the meditation hall, lay on the floor and did a body scan. It was great.

No new media to list.

No photos to post.

*I like the word prognosis because it is related to the Sanskrit word prajñā. But whereas the Greeks were referring to knowledge of what is to come; Buddhists were interested in what precedes knowledge. (This knowledge is c/o Red Pine in his book on the Heart Sutra.)

Wednesday, October 10, 2012

Chemo lashes

There are 1-2-3-4-5-6-7-8 eyelashes clustered in the middle of my right eyelid.

This is chemotherapy.

  • Sensations like needles being stuck in my toes.
  • And feet changing into blocks of wood, then back again.
  • Hip and knee joints sore and tight. 
  • Numb face.

More often the last few days:
  • Harrowing production of rock-like poo, with bright blood. 
  • I am so low energy that I can actually sleep during the day, which is delightful. I'm mostly still managing to do 8-10k steps per day. (Today, 4k.)
  • Spacey, losing stuff like my prized peacock feather parasol (umbrella), and my sunhat. 

Feldenkrais this morning was good. All the pains and soreness were there, but there was also gentleness and by the end, some moments of happiness.

  • Watched a beautiful short animation called Bamiyan (part of a collection called Nine Nation Animation.)
  • Listened to Terry Gross interview Tig Notaro, who recently did a standup routine in LA after hearing that she had cancer in both breasts.
  • New book (funny) from the library: Is Everyone Hanging Out Without Me? by Mindy Kaling. (Here's Terry Gross interviewing her, but I think she is funnier in writing.)

Monday, October 8, 2012

Second half of today was crap

After a fairly active morning (well, walking with Lo about a mile to Chloe's for breakfast and back, and taking her to the train station), and attempting a few tasks I decided to put off no longer, I could hardly move this afternoon. I lay in bed for many hours with my eyes closed, not sleeping, then watched an episode each of Peep Show and Arrested Development and played Facebook Jeopardy.

Social Security requested a document from me - one I don't have - so I called Social Security (a different part) today to try to get a copy of it. Four or five times I listened to a message that said something like, "There are too many calls. Mondays and Tuesdays are super busy, so don't call then, and also don't call between 10am & 2pm on Wednesday through Friday."

I tried to figure out if my right headlight doesn't work because of a blown fuse, but the fusebox map seemed to be for another car. After pulling out around half of them, I couldn't even find the right fuse for the one that works.

So having not completed those two tasks, I started a third. I composed a letter to the National Personnel Records Center in Illinois, requesting my mom's medical records from Germany and France in 1963 to see if she was given DES during her pregnancy. But then there was a 'drum issue' and only half the letter would print...On the positive side, I tried to do the things I've been putting off...

The energy drained from me and my feet turned numb with occasional needle-like pains. My guts cramp up occasionally. I feel completely wiped out. Was planning to start the shots again today boost white blood cells for Mexico...but abs. cannot.

I know a lot of people have the same symptoms I have - they get super tired but can't sleep, they are drenched in sweat, slowing down, hair falling out or growing in the wrong places, eyesight going to hell, digestion doesn't work, aches, pains, spaced out. These are some typical building blocks, or shall we say breaking-down blocks, of a human body aging. Apparently, it can happen quickly, even to people younger than I, who don't have cancer. If I didn't have cancer and I were healthy like I thought I was a year ago, I wouldn't know this much about other people. But now I'm Sick with a capital S and people tell me their problems, problems the likes of which I have mostly been blissfully free from my entire life. I'm glad I know now.

Media updates:
  • Walked to the library to get a movie I had requested. Forgot it is Columbus Day (Native American Day), so no dice.
  • Right now, listening to Alan Ginsberg give a lecture about the breath/ pause/ phrasing/ rhythm at Naropa Institute (40 or so years ago).  
  • Yesterday we saw Looper, which I liked less than I thought I would.
  • Reading graphic nonfiction called Economix: How Our Economy Works
  • These days I mostly don't seem to get to the end of books I'm reading or listening to... 

Now I am thinking of what substances I'll take so I can sleep tonight. Ten mg of melatonin combined with Benadryl or something else sounds good. Heating pad on my feet, mmmm.

Saturday, October 6, 2012

Smoothish Sailing

Laura and Bill were with me at chemo. I hadn't seen Bill in a while and we had a great chat, and in no time we were done (actual time is about 5 hours.) The Onc. nurse David is efficient. We heard about his cycling trip to Tuscany. It was a nice day, didn't pick up the laptop or a book the whole time. The fact that it was the last chemo for a while didn't feel that significant. I suppose it's because the infusion isn't where things end.

The chemo/drug routine before today has been that, before any actual chemotherapy, I was given among other things, 8mg oral dexamethazone, and 20 mg intravenously. By request today I received no oral, and 10 by infusion. It is a completely different experience, much better. Kathy commented how different I was this time than last time. I am very tired, but it is better than the buzz I usually have, that keeps me awake most of the night.

Even though there are several huge events happening in San Francisco this weekend, there was little traffic getting to Misha's, or else I just found a good way to get there (Laura drove.) (Post to Gough to Fell to Mission and parked on Mission, just have to leave by 4.) I was so wrecked, at Misha's I fell into a deep asleep in less than five minutes. Back home, Karunadevi made Laura and I an excellent dinner and we watched a movie.

More on drugs: I stopped taking prozac a couple of weeks ago. One less pill in my life feels good.

I didn't use an estrogen patch for a week, but the world heated up again, so I reapplied for a week. (I know people say hot flashes are natural, but then again, so is cancer. AND this is medical menopause, so it's not natural.)

The further away I am from chemo day 1, the better I sleep, even occasionally without pharmaceutical or herbal aid. I am even tired of the herbs. Sometimes they are too difficult to digest, or it is too much fiber, and there are so many of them. I'm supposed to take them three times a day but I often do two or one.

I am so sick of drugs. On the other hand, my feet are numb and tingly, it's 12:36 am, and while I am very tired, sleep does not happen. I will try to finish this post, probably not going to happen tonight. Perhaps a new cocktail of melatonin and Vicodin? Yes.

Now it's morning. I guess the big dexamethasone dose usually masks how shitty I feel.

Media imbibed wholly or partially in the last several days:
  • Diary Drawings, Mental Illness and Me, by Bobby Baker. A very unusual and moving visual memoir written by friend of Dhammagita's. 
  • Half way though Wicked tapes, still lovin' it. (I only listen to it in my car.)
  • Cancer Vixen, aforementioned author with Italian name. 
  • What The Hell Are You Doing? by David Shrigley
  • This Must Be The Place (2011). The excellent Sean Penn as alienated but strangely wise and burned out rocker Cheyenne takes a journey home to retaliate against his father's (Nazi) oppressor. Very Indie, style-wise. 
  • 500 Days of Summer (2009). Shitty title, or anyway gives the wrong impression. I like Joseph Gordon-Levitt, as an actor and at least how he appears to be as a person, even if his name is hard to remember. 
Bye David, I hope, though you are awesome.

Thursday, October 4, 2012


Just today (not kidding!) I was 
thinking about how sick I am of 
seeing signs that say "artisan ---"
Then I saw this sign at 

the Farmer's Market...
Twelve million people in this country have cancer, according to the American Cancer Society. Around five million of those have breast or prostate cancer. Two or three of them have the kind of cancer that I was diagnosed with in December: cancer of the vagina. It took me a while to be able to say that. It sounds like a cruel joke.

But that's gone now, and I hope the cancer in my lungs responds as well to treatment as my vagina/ bladder/ pelvic bones did. And I hope chemotherapy doesn't end up being the gift that keeps on giving - in terms of insomnia, dead nerves, and a loose canon where there used to be bowels.

I got some more info yesterday - nothing about prognosis of course - about how things will progress, and some more info about how Dr. Nelson thinks about it all. I spoke with her for more than an hour. The main thing is, she complimented my eyebrows.

My cancer staging has changed to "Metastatic Stage 4," upgraded from "Stage 4b" (because now it involves only one organ, the lungs). My blood counts were better. I haven't been able to look at them because I can't log on for some reason. But something went from 2.5 to 2.9. *

Twin Peaks, sans fog
Statistically, the odds that the cancer is, or will, appear elsewhere is high. That is to say, the chances of wiping out every single cancer cell is low. That's why they think of advanced stage cancer as a chronic illness, or rather, a chronic recurrence. It is not expected to go away, and in many cases it doesn't, or it comes back. However, Dr. Nelson said she wouldn't be surprised if mine did go away. She also said my lung nodules are so small, they could have waited on the chemo, but doing it now might mean a long remission.

I asked her what the factors were in assessing how someone is doing. She said:
  1. Changes in blood labs, for example, 'tumor marker' (or CEA meaning Carcinoembryonic antigen) elevations. The main tumor marker for ovarian cancer (and my type as well) is CA-125. 
  2. Scan results
  3. Physical exam
  4. How the patient feels
Wires in the sky
She said if someone's scan showed tumor growth and they felt energetic and were eating well, etc., she wouldn't necessarily recommend chemotherapy. She seemed very tuned in to quality of life issues, which was a comfort to me. She cut the intravenous dexamethasone (steroid) I get before the chemo drugs in half. Yay! Maybe I'll be able to sleep tomorrow night before 4 am... 

I have an appointment with her on October 22, so some time before then I will get a CT scan of my lungs, which will be able to determine if there are still tumors in my lungs, and if so, whether they have grown or shrunk or stayed the same. In about four months, a full PET scan, which looks for cancer of any size, anywhere, rather than determining size/change in a particular place. If everything stays clear, I will get scans (not sure which kind) every three to four months for a year or two. 

I have chemo tomorrow, which in one sense is too bad because my feet have come back to life, and my digestion seems to be working normally, and my face isn't numb anymore! I'm fairly energetic, too. Dr. Nelson advised me to take preemptive meds (Colace or Docusate Sodium) against constipation, a word which means something very different to me than it did a year ago. That is, formerly an inconvenience to feeling like your body has mostly shut down in a torturous way. Despite the name of this blog, I don't really like talking about shit (or lack of it), but it's part of my experience now, so there it is.

Will tomorrow be my last chemo ever?

*The 2.9 was the white blood cell count. Normal range for white blood cells starts at 3.1. That is, normal for people who are not on chemotherapy. Abs. Neutrophils up to 2.0 from 1.4 last time. Normal range starts at 2.1, and below 1.5 is considered dangerous). Hemocrit, hemoglobin, red blood cell count, are slightly low. Everything else is within normal range, including.

Tuesday, October 2, 2012

Functions of hair

I stare, fascinated, at other people's eyebrows. It's astonishing how much they move around. My eyebrows probably look better than they ever have. After creating them, I dab on some hairspray with my finger. It shellacs them down so they last all day. They pass as hair eyebrows. Maybe I move them around, too.

I went outside yesterday and today with just a scarf on my head. It was 90-something degrees (34C), way too hot for the rug. It was all right.

You don't know about half the functions of your hair until you lose it. For one thing, hair softens the aging signs on your skin - on your face, on your arms, everywhere. You notice this when all or most of the hair is gone and wrinkles shout out. Hair is a buffer between your skin and the outside world. Your skin feels things more, it is truly naked. I remember reading The Naked Ape when I was in high school. That's me.

Your hair keeps the flow of mucus produced by your head from constantly dripping out of your nose. It keeps particulates out of your lungs.

Eyelashes keep crap out of your eyes, including flakes from the crap you put on your eyelids that pretends you have eyelashes.

Eyebrows make you look like something other than I, Robot, maybe, even, a human being.

Seems like my hair is likely to start growing again after about a month - maybe mid-November...In the mean time I bought another wig, identical to the main one I have except a little darker and redder.