Broken, OR, The Power of Ideas

I am on the first day of my solitary retreat at the SFBC land in Lake County. I have come into town to buy a few things and check on email from Spirit Rock. (I am on a waiting list, and also requested a private room.) Sadly I didn't hear anything from them.

Most of this I wrote in my tent last night:

The Power of Ideas sounds like a corporate marketing slogan. But the thing is, ideas are powerful. And slogans are often true. By an idea, here, I mean a thought. A thought like one I had today, my body is broken. By which I understood myself to mean, hurt. Very deeply hurt from the machine- and chemical-generated abuse it underwent.

Random sign in Lake County

Part of thinking is re-thinking, discovering what you were thinking before, that you didn't even know you were thinking. I thought of my treatment as temporary, with temporary effects. Dr. Patel told me the side effects would go away after a month or so. But here it is, two months down the line, and side effects abound.

For example, I had a hot flash tonight. I have never had a hot flash before. The occasional stabbing pain deep in my gut. Soreness in my hips and knees. Arthritis...was it caused by the radiation? I don't remember hearing about that as a possibility. Painful urination. More gassy, less bowel control. Some of my teeth are sore. I sleep 10 to 12 hours per night. An occasionally intense need to be alone, inarticulate, can't quite explain, a deer in the headlights. Confusion. A dream about driving, trying to get home, and everything moving around, home is getting further away and the route more confusing. Finding being around more than one other person, even people I know and trust and love, stressful. Strange effects from food. Like sometimes after I eat certain foods, normal foods that people eat, like breakfast cereal with wheat in it - but it's not normal because it doesn't have any sugar - my vagina itches for a while, which makes me anxious. First the itching and before you know it you have cancer again. (This is also a thought.) Or sometimes my face will itch.

The Order posse trying out ideas for
next album cover

One morning, say, I feel better, energetic, and I think I am done with recovery. I am done. But the change seems to be non-linear. The next day I feel broken, weary.

I thought that on around March 22, all the pain and trouble would be over, or close to being over. And that thought keeps getting friction. It seems that in some ways my body is irreparably damaged...or is that just an idea? In any case, my body feels different - behaves differently - than it did a couple of months ago. They aren't differences anyone would wish for.

Idea: The inevitable deterioration of my body took a great leap forward in the last three months.

Facts. Grief coming from my body today, crying and crying. It's a relief to let some of it it out. Meditation feels emotionally healing.

...I just googled "radiation side effects arthritis" and found more online forums from cancer survivors. Here is a quote from a man who had anal cancer and got 26 radiation treatments:

...The collateral damage has been enormous. It's been over 5 years now since I had this done and it is only getting harder to move around as the years pass...I was only 43 when this happened - the radiation "aged" my body exponentially. 

Geez, why didn't anyone tell me how badly my body was going to be messed up? I have to start doing YOGA!

Vagina. Vagina. Vagina. It used to be a sexual word. It used to be a private word. Now it's like Leonard Cohen's broken hallelujah.

Solitary Retreat until May 2, Food Issues

Outside wall of Radio Habana Social Club

I'm going up to Lake County for an Order retreat, then a solitary retreat, tomorrow. I'll be back around May 2. Getting ready/shopping/packing is exhausting!

I went to the UCSF support group yesterday. I like going to that group, in spite of being really sensitive, and get rattled by people giving unsolicited advice, which the world seems to be full of, even when it's not directed at me. Energy-wise I am very high-and-low still, also sometimes unable to sleep.

I'm starting up the process again of becoming a private preceptor, in other words to go through a several month process hopefully in the end authorizing me to ordain people into our Order. Which hopefully will be Dawn, next year.

Misha gave me my new treatment plan, seven pages, which is excellent. And I never read the second half, post-treatment part of Life Over Cancer which I will bring with me on my solitary.

Misha has told me that studies show more and more of a link between sugar and cancer growth. So I thought I would go back to my zero sugar policy, but haven't. This is simply because of the amount of discipline and effort it takes.For example, the jam I have has sugar. When I went to the bar, it was either water or a drink with sugar in it... I am certainly eating a lot less sugar than I would like to.

I'm also eating a lot less meat (by which I mean, flesh of any kind!), as the cravings are less frequent. Noticing how much discipline and effort it takes to be a vegetarian, for example, when you're at an Italian restaurant and the vegetarian choices are all starchy with little protein. I suppose in the past I would have tried to avoid such restaurants, or maybe I didn't feel like protein was such an issue.  Still, I'm around 95% vegetarian at this point. I guess I am still to some degree prioritizing my health over the lives of the animals.

And I'm craving caffeine! I suppose I am wanting to go back to my previous routine. I'm bringing no sugar on my solitary... Feeling better brings new challenges...

Musings + I Didn't Think Anyone Liked Me So Much Etc.

Savanna's aunt Judy's mandala
not quite captured

Did I write about this already? I might have. Were people not sweet before? Or was I not sweet? Or was I oblivious to affection? It seemed before like no one, or most of no one, gave a crap. Now people want to talk to me before I kick the bucket presumably. Don't get me wrong, I like it. I should keep this cancer story going for a looooong time.

Interlude: I realized something about Dr. Tavakoli. I had asked him to be direct. Based on a couple of our conversations, I'm not really sure that he can be. I mean, he can be direct about conveying results from studies, but those things aren't...what I meant by being direct. (I refer the reader to my post Optimism or Pessimism which talks about ways in which studies are and are not relevant.)

Anyway. The way individuals have responded to my illness seems to correlate to their past experience of illness. In other words, if they nursed an ill husband, or had a close friend with breast cancer, etc., or dealt with some kind of illness themselves, then they're sort of 'here' in a way that other people are not (even if they're not geographically here!) In other words if you have had little experience of illness, pain, or disability, you don't particularly resonate with someone who is very ill. This is not a complaint at all. (It's exactly how I was around 5 months ago!)

I'm enjoying reading Cheri Huber, who someone on the monthlong Buddhafield retreat last summer - I can't remember who - recommended. The book is Trying To Be Human.

It seems like I'm getting a tiny bit more energy every day...

If You're Looking For Me In The Next Month Or So + Info

Note the San Francisco skyline in the detail of my
Medicine Buddha (painted by Tarakarunya)

Just had a chat with Dr. Tavakoli.

He said there was some concern about my lungs from what showed up on CT scan (also could be nothing). So they still want to do the PET scan in May, which by the way is 'labeled glucose', whereas the bone scan is 'labeled phosphorus'. Anyway, if there is disease progression, there will likely be 18 weeks of chemo. If there is nothing, no chemo, and things will just need monitoring, what kind of monitoring and how often will have to be determined.

Otherwise here is my medical/retreat/misc. schedule!

April 10, acupuncture
April 13-May 2, Order retreat followed by solitary retreat at Lake County house
May 3, SF dentist & haircut
May 4-11ish, The OC
May 13-20, Spirit Rock meditation retreat
May 30, PET scan
June 16-24, SFBC Summer retreat
July 4, Montana?

A Visit, a Tower of Song, and a Serial Killer

Delightful Savanna is here for the weekend from New York. After a nice breakfast at Chloe's and ambling around Valencia street, we went to the Conspiracy of Beards concert at the Center. It felt like church singing in the most genuinely uplifting sense. Or anyway, my kind of church. The power and beauty of the voices bring out wonderful details in the poetry of Leonard Cohen.

Conspiracy of Beards
photo daviddelp.com/hardly-strictly-bluegrass/

I crawled into bed and watched the documentary Aileen: Life and Death of a Serial Killer. It was haunting and profoundly sad. I have had very little physical violence in my life, but somehow I very deeply resonate with the pain of situations of extreme violence, especially against women and the sad stories of the perpetrators, both of which are part of her story. I remember reading an account of a Cathar (early Christian sect) woman being burned alive. I cried for a long time. After watching the movie, I had a dream that I saw Aileen Wuornos and told her that even though she was betrayed by those who sold her story to Hollywood, it was good that some of her story was told, especially in Nick Broomfield's last documentary.

I feel silly that I wrote about wanting to stay in bed writing all day. Well. I wrote to Dr. Tavakoli to ask what the current deal is, if it's time for me to turn into Lance Armstrong...I  hope that you realize that what I write here is true, but only insofar as the present moment lasts.

Transitions

Daffodils, jasmine, lavender, and lilac,
from Dayamudra & Nancy

I was going to go for a hike this morning but stayed in bed much of the day instead. So tired. Too much excitement?

I'm a little concerned that I am still so tired. How long will it last? Or am I no more tired than the next guy, just that I can sleep as much as I want to? How much energy am I supposed to have? I seem to have less than other people. I think the docs did tell me that the fatigue could last for a few months.

In the afternoon I went for a walk up to Bernal hill with Karunadakini, then met some folks at The Lone Palm, a bar up the street, for celebratory libations. Robin, Dayamudra, Trish, Bill, Nancy, Mary, Rochelle, Mike, Padmatara, Dhivajri, Helen. I had a ginger beer. Walking home I wanted to stop and buy ice cream but somehow refrained.

A few months ago I left my world and entered the world of cancer. Now maybe I'm coming out of that world. I don't know whether I am or not. I'm assuming I still have secondary cancer/bone sclerosis, but I don't know what the implications of this are. But in some ways I don't want to leave cancer world. I want to keep having a lot of space in my life, and for things to be simple and loving, and to be able to rest when I am tired, and to spend hours lying in bed absorbed in my thoughts, writing.

You might say, wow, do you want cancer or not? What I want is a sane, spacious, and reflective life. I dread my awareness thinning out because it has to take in so many things, and then starts hungering for them...

Of course, I don't want the pain. In the support group yesterday someone suggested a website that seems to be just people with cancer discussing their issues. I am learning a lot. I saw there that even though few people have vaginal adenocarcinoma, many, many people get pelvic radiation. Anyone with cervical cancer gets a virtually identical treatment to what I got. I saw that some of the people who beat cancer end up disabled from the treatment. Either because they lost or wrecked a body part, and/or because they are in constant pain.

¡Ay Caramba!

Portugese graffiti ("Day of the Living")

Today I had a somewhat painful exam (because of scar tissue) in Santa Clara with Subir Nag, the doctor who did all the internal radiotherapy. The first thing he said was, beautiful, good. Because my tumor is gone. He said that it was a large tumor, and he has no doubt that it has completely vanished. I don't know exactly what this means in terms of the future but it would seem to be another, more significant best case scenario.

When I first met him in January he had told me that he was sure he could get rid of the tumor, which was far and away the boldest statement any doctor had made at that time, or since. I thought, "We'll see." (Hope and fear must be managed!)

He said doctors have different styles, some rely totally on scans etc, but he relies on how it feels. He said I could get the PET scan, wouldn't hurt, but no more information would be revealed from it, and it would not effect future treatment plans.  Bless his cotton socks! He has felt and treated thousands of tumors. He said this week he had treated cancer in eye, prostate, and ovaries...

Lake County resident

He had been concerned that the tumor was so deep that once it was gone I might need surgery to patch things back together. Surgery might still  be necessary in the future. For the next year or so, scarring from radiation is a risk. (I have no idea why scarring continues for so long after treatment.) For example, my urethra could become blocked by scar tissue and would need to be surgically stretched open again. Also, the vag could shut down as it were, so that sex would not be possible, or just painful. There are things I can do to help reduce this possibility, but nothing much to be done about the urethra as far as I know.

Padmatara and I couldn't quite get our minds around this news...we went for veggie burgers and pinot grigio at the Beach Chalet. The water was super choppy, incredibly cold wind out there today...we watched para sailers zooming by...

For those of you who are local, I'll be at The Lone Palm tomorrow (Friday) 6-7pm if you'd like to join me for a celebratory beverage. (22nd/Guerrero)

Questions for Dr Tavakoli

Am I done with treatment for...at least a while?

Busy (For Me) Day

I'm sorry if reading my last post made you wish you could sleep in, or  made you think I am lazier than you already thought I was. It's true that I have a great love of sleep, cancer or no cancer. (Apparently a sleepers' gene has been identified. Around 50% of my family has it, unless they're at my house, in which case all of them have it.)

Today I did four things. Went for another consult with Misha and Elisa, met with a social worker, Susan Chen, at Kaiser for half an hour, chatted with Tong for a while at the "Sugar Bowl", went to the weekly support group at UCSF, and meditated at sangha night. Pooped!

The support group was GREAT. Such nice people. The consult with Misha was also great. I may write up something about both later. Misha did emphasize anti-inflammatory foods, especially no or very little sugar. Stevia is ok. Ack. For a couple of months I didn't eat anything with added sugar in it, and was mostly not tempted by such things. This may be difficult at this point, but I will try.

Followup email from Dr. T about taking taking pamidronate:

"I gave you a call but could not reach you. You do not have extensive bony involvement (based on the CT and bone scan). It's reasonable to wait until the PET scan to determine the course of action. Generally, pamidronate has been used in patient's with solid tumors (lung, breast etc.) that have bone involvement, in an attempt to decrease the number of "skeletal related events" (i.e. fractures). Although there is no way of quantifying your risk, at present it does not appear to be high. Although there are many potential side effects (as with any medication) the most common ones associated with pamidronate are low calcium (hypocalcemia) and kidney dysfunction. Let me know if you have any questions. I have hospital rounds this week so there may be a delay in my replies to your messages."

typical san franciscans

Evolving travel plans:

I searched high and low for a retreat in mid-April and found the Heart Sutra retreat in Wales, which got nixed because it is a men's retreat! And the retreat at Joshua Tree got nixed because I couldn't get a private room. Then I was thinking about visiting Montana and doing a solitary...nothing seemed right, until the land became available. So I think what I will do is go on solitary retreat there for two weeks, then head down to my dad's for about a week, then do a little road trip maybe to Utah/Nevada for a week or so. I have a follow up exam with Dr. Littel on May 25. Misha also suggested getting a second opinion on the next phase of treatment...

Tomorrow, a follow-up exam with Dr. Nag down in Santa Clara, reiki with Tania, teaching the drop in class, then skype call with Kathy. 

Cancer Helps Me Do Nothing

photo by paris cullen

It seems that when I don't have to get out of bed, I don't. I fully plan to, and know that it is the right thing, but I don't. My bed is like an anti-siren that keeps me from traveling...

I have lots of things to do, just nothing that has to be done right now.

You wouldn't think that someone lying in bed all morning would have issues with it. But this morning I noticed around the edges thoughts like, Oh, does this mean I'm depressed? How can I live  without caffeine? And I thought about the things I ought to do. Meditate, figure out solitary retreat, walk or find a yoga class, make this appointment or that one, figure this or that thing out. Fact is, I always feel like I should be doing something, unless it's Sunday morning.

And as long as I am reveling in self disclosure I may as well add that there is also a tinge of fear, that the henchmen of the protestant work ethic will swoop down and serve me a cup of good coffee.

If I'm not going to get up, why not just lie in bed, unified?

I decided not to worry. I lay in bed until noon, thinking about stuff...

For example, that around four days ago taking a shit stopped involving pain.

I finished reading The Final Solution by Michael Chabon and Mennonite in a Little Black Dress by Rhoda Janzen.

I may stay up at the SFBC land for the last two weeks of April. In spite of pondering Mexico and Hawaii, I may end up in an eco hut on the northern coast of Oregon after that. I don't know if I have the wherewithal to set up anything more elaborate. Plus, I have a car.

I am not in a hurry. I have no ambition. I have no bucket list. I move slower than I used to.

I thought about how strange it is to have people worry about you and not want to bother you. It's strange influencing distant friends and acquaintances by virtue of one's disease. The me and the you of me having cancer is not to be sniffed at. There's a lot more to this, but alas, I am somehow ready to get out of bed.

I leave you with a few words from Yoda:

Medicine Buddha

A tube arrived in the mail from "TKY" in West London, which is Tarakarunya who I was ordained with in 2001.

I think she must have painted this! There was no note with it.  It is very beautiful.

Kathy is getting it framed by the super nice guy, Randy, at Back to the Picture on Valencia, so I will get it back around April 12. Can't wait!

My Senior Citizen Pelvis + Updates Galore

Twin Peaks in the distance (radio tower is on right peak)
from Bernal Hill. TP is the 2nd highest point
and the geographical center of the city. Random factoids.
Photo Paris Cullen

On Wednesday I had a CT scan; on Thursday, a meeting with Dr. Tavakoli, who is my main oncologist now, to discuss it; and Friday, a complete bone scan. Some of it might not make perfect sense but it's what I can manage at the moment. It's a lot of information, gleaned from scrawled notes...


Notes on Dr. Tavakoli Meeting 

The pelvic bone sclerosis (scarring) is unchanged since the last CT scan in November. In other words, I have responded very well to the treatment. Apparently, on some people it has no effect...

Dr. T said my condition fits into the category of "solid tumors with bony involvement." He suggested a course of pamidronate, which is in a class of drugs called bisphosphonates, to strengthen the bones/decrease chance of fracture. Dosage is 60-90 mg every 3-6 weeks for up to *2 years*. Side effects: 5% chance of osteonecrosis of the jaw. (These last two are no doubt what I get for asking that he not hold back!) It is not a cancer treatment - it's for quality of life.

He did not say much more about the drug and what it does. Drugs.com says "Pamidronate is used to treat bone damage caused by certain types of cancer such as breast cancer or bone marrow cancer." I was surprised by the suggestion because...I thought I was done for a while anyway, and I didn't know I was at risk for bone fractures. He said we could talk about it more after the bone scan.

He said not to worry about gall bladder 'wall calcification' that was listed on the last PET scan report, unless there is pain.

There has only been *one* study of vaginal cancer, and it was only 20 people (not statistically valid I think.) In that study, there was a 50% chance of people with advanced stage cancer living more than 5 years. Women with advanced breast cancer have even worse odds, based on better statistics, only one third live more than 5 years. (On second thought I think it's probably better not to have these numbers!) As Dr. Block says, these kinds of statistics are not relevant to individuals.  In any case as I'm sure I have said before, there is no survival data for vaginal adenocarcinoma.

Six months from now (Sept/Oct) I should know if this is an aggressive cancer; the PET scan will also be a major milestone.

Photo by Paris Cullen

More about the reference to Stage IV patients as 'treatable' rather than 'cureable'...though I may have already explained this elsewhere. This means they treat it but don't expect it to go away. Best case is that it will be dormant for a long time. The usual cycle with cancer is to alternate between dormant periods, and periods of treatment.

Is local metastases better than distant? Yes, but likelihood of it turning into distant mets is very very high. Is cancer in the bone more life threatening? No, best to look at it all as one cancer. Is the best way to evaluate my primary tumor with a physical exam? Yes. I will make an appointment with Dr. Littel. He also suggested I discuss my concerns about planning my life and so on, with a social worker.

Dr T said he would follow up about the lung nodules with the radiologist who wrote the CT scan report. Also ask Dr Littel to check my gall bladder when he gives me an exam. (I'm going to wait until I heal a bit more until I get an exam; last one, mid-radiation, was amazingly painful.)

By the way, PET scans are evaluated in terms of SUVs - will I ever get away from those letters? (In this case they stand for "standardized uptake value.")

I felt good after this meeting. It seemed like it was the first time I had gotten any info about my response to treatment, and about the future. Before then it had been all about "I don't know. Let's see what happens."

If the PET scan in May/June is clear, I'm good to go. I will get a CT scan every three months for say a year, then every 6 months. If the scan is not clear, chemotherapy every three weeks for 18 weeks.

An entire skeleton scan, which didn't really touch
my nose. Kathy and Tong were in the room. 

Photo Tong Ginn

Bone Scan

A visit to Nuclear Medicine department...an injection of a radioactive tracer...a trip to Walgreen's and a wifi cafe so Kathy could write her blog post. Then back to the hospital to lie down very still and watch a sort of square white plate with a crosshair in the middle of it move very slowly from my face to my feet. Having to lie still on a scanning table is, generally speaking, rather relaxing.

When I got home there was an email from Tavakoli:

"The bone scan shows the following (essentially involvement of the pelvic bones but no other evidence of widespread disease involvement)[in other words, metastases remains localized to pelvis.]

Thought a repeat of this old gem might be in order

"Labeling abnormalities were noted to involve the left inferior pubic ramus into the ischium, and right of the pubic symphysis, extending into the right inferior ramus. There were degenerative changes [meaning early signs of arthritis] in the hips. The overall labeling pattern was otherwise unremarkable. [The tracer I was injected with is also called a label. I believe it is what shows up in the scan/gives off radiation. ]

"-I would recommend pamidronate infusion every 3 to six weeks as we discussed."

I emailed him back with a few questions. His reply: 

"The changes in the hips are related to arthritis according to the bone scan. The other findings are related to the cancer and are in line with the prior PET scan. Please let me know if you would like to proceed with the pamidronate infusions."

Cancer AND arthritis. Grand. My pelvis is quite the senior citizen.

Well I had 24 hours of thinking I would likely be free of scary drug regimens for at least several months. I thought I'd only need to receive the pamidronate if the cancer in the bone had gotten worse, but alas...
I have a lot of questions about this. I am thinking that unless it is really crucial, or will not hugely effect my quality of life, I don't want to do it. But we'll see. I need more info.

My email to Dr. Tavakoli (We'll talk on the phone hopefully next week.)

I understand that pamidronate is not a cancer drug, but it seems to be administered in the same way as chemotherapy, and it seems some of the side effects are the same (nausea.) I had been thinking I wouldn't be on any more drugs, at least until the PET scan...anyway, here are my questions:

Where does the path lead?

1. No one has said anything about me being at risk for fractures this whole time...so fractures are considered a real danger for me? Or is it unknown so the med would be 'just in case'?  My understanding was that the bone sclerosis had not deeply penetrated into the bone.
2. What are the risks of not doing it - breaking my hip? Likelihood? Can I get a measurement of bone density (like the ones they do for osteoporosis.)
3. Alternatives?
4. What are the common side effects? (A quality of life question. You mentioned jaw osteonecrosis but that seems to be fairly rare.)
5. For how long? (''up to two years" seems like a long time!)
6. Are there advantages/disadvantages to longer or shorter cycles? (3 or 6 week)

Should I get a second opinion?

To Do

Appointments with Susan Chen, Dr Littel, psychic!

Email to update Misha

Singapore Sister Kathy Visits Suvanna and Sees the Light

I don't think my sister's cancer has seemed real until now.  Every time I've interacted with her, even through the side effects of radiation and chemo, she seemed herself – funny, calm, grounded.  She looks great, isn't in pain nor is she sick.  How can she have such a serious, stage 4 cancer when she isn't even sick?  I hadn't really understood my sister's situation until I spent time with her in the doctor's office.  I get it now.

Our visit with Dr. Tavakoli Tuesday was full on. We torpedoed him with questions for 45 minutes and I must say, Doc was never impatient or annoyed or hurried.  I don't know about you, but my doc appt's all seem accompanied with a symbolic tapping of the foot from the doctor suggesting something pressing is happening next so hurry up!  Dr. T was patient, informative and completely available.  That's it: he was totally available, to both of us.  Suvanna says all her docs are like that.  I'm liking that a lot.

Suvanna's CT Scan told us that things have pretty much stayed the same in terms of bone damage and lung nodules which is good news.  Another scan two days later, and we're waiting for some radioactive liquid to travel through her body as I type so she can have a bone scan in an hour or so.  This scan will reveal more about the cancer in her pelvis. The doc said it takes longer for the treatment to reach inside the bone so more will be known about the condition of her bones from the PET scan May 30.  He also said that the common pattern of stage 4 cancer is it is dormant until it is active and they treat it until it is dormant until it is active and they treat it until...

So here we are doing our best to be normal - have fun, laugh, see the city, eat outrageously good food, keep picking crap rented movies, visit second hand stores looking for long lost treasures. . .

I get it now.  I get that Suvanna's ability to handle this journey isn't a measure of the severity of her illness.  It's a measure of her incredible grace and emotional maturity and Buddhist community of love that keep her herself through this surreal time in our lives...

             

Just When I Was Getting Ready To Bite The Proverbial Dust

Doctors are so geeky. I didn't realize. They talk so fast, barrage you with technical information. At least, all my oncologists do.

Dr. Tavakoli starts to explain the results of the CT scan by talking about how 4mm lung nodules were found, but they were probably there before, and I should get 21 day cycles of Pamidronate to reduce the risk of bone fractures...

But by the time Kathy and I had asked many questions, what we ended up with was a best case scenario on my CT scan, which is that they didn't find anything new. (Apparently seven out of ten people have lung nodules! And only if more bone damage shows up from a bone scan I will get the Pamidronate.)

Anyway, we talked for about 45 minutes. I'll write more later.

1. BONE SCAN

Appointment Date: Mar 30, 2012
Appointment Day: Friday, 1:45 PM
Provider: NUCLEAR-MEDICINE
Facility: SAN FRANCISCO MEDICAL CENTER
Department: NUCLEAR MEDICINE
Location: 2425 GEARY BOULEVARD 2ND FLOOR
Cancellation Number: (415) 833-4200 (MON-FRI, 9 AM-5 PM)
Rebook Number: (415) 833-4200 (MON-FRI, 9 AM-5 PM)


2. PET/CT SCAN

Appointment Date: May 30, 2012
Appointment Day: Wednesday, 4:45 PM
Provider: NUCLEAR PET - CT SCAN
Facility: SAN FRANCISCO MEDICAL CENTER
Department: NUCLEAR MEDICINE
Location: 2200 O'FARRELL LOBBY 1ST FL
Cancellation Number: (415) 833-4200 (MON-FRI, 9 AM-5 PM)
Rebook Number: (415) 833-4200 (MON-FRI, 9 AM-5 PM)

Labyrinth

Labyrinth at Land's End (Photo Paris Cullen)

Yesterday I slept for about nine hours, and then had an hour or so of meditation. An excellent start to a day!

Paris, Kathy and I had lunch at Patxi's in Noe Valley and headed for the Haight. It was too wet and cold for the Singaporeans, so we went home, did some organizing (which meant somewhat painfully getting rid of books and art supplies I haven't used in decades), and rented Tinker Tailor Soldier Spy. Cull and Paris were both asleep within the first hour!

Today we got me a CT scan in the late morning, and went down to Land's End and Clement Street.

I have been reciting the Tsong Khapa poem in my body in morning meditation. The reason or part of the reason I can let go of anxiety is that I am committed to enjoying my life. Kathy commented today how calm and happy I seem (or something like that.) She said I didn't seem angry or depressed or sad. I said, I am a bit sad, but that's all right.

A theme that is coming through lately is that to some degree I am expecting to die in the not too distant future. Of course, I'm also aware that this may not happen. Sometimes I am more afraid of life than of death. I don't know how to explain that. I'm not depressed. Life has its many joys of course, but it is also relentless and confusing. Having had this cancer experience, with my tenure at the Center ending and my travel options severely curtailed by my medical situation...I don't know which direction to move in my life.

But then again, all this is just stuff going on in my head. If the doctors told me I was very likely to be fine and cancer-free forever, that would cause certain kinds of thoughts. If doctors told me I am likely to die in a year, that would cause other kinds of thoughts. So far, doctors have no predictions, and whatever happens is what happens. Sometimes that means potential scenarios unconsciously and subtly develop themselves. It's difficult to see perspectives or mental states as temporary. Because there is some kind of thread that is linking it to the past, the future...to everything. They can seem substantial.

Tomorrow I will perhaps know more about my prospects.

P.S. I love the word labyrinth.

Brazilian Jesus

Mission mural, photo by Paris Cullen

I've been having memorable dreams. One was that I was writing a super important poem. All this stuff was happening but the most important thing was to finish my poem. I only remember the first line, something like, "Looking for Brazilian Jesus."

In another one I suspected that I was dreaming. So I asked myself, How can I tell if it's a dream? There is some question I need to ask but I can't remember it. When I woke up I realized the give-away is asking that question. (If you are asking, it's a dream.)

I've also had two dreams about my ex-husband Michael, who I haven't thought about in years. (We were married in 1983 I believe and only stayed together a few years.) In the dreams, I felt a great deal of tenderness and longing.

My Talented Niece's Photos -- Sunday and Monday in San Francisco

Fort Mason 

Paulette and Kathy

Laura: And where's my goddamned pedicure?

How talented is Aunt Suvanna?

Green's and Family and What's Next

Paris, Paulette, Laura, Kathy, Suvanna

I think because my hair is now short, people have commented a lot on how much Paulette and I look alike. One woman suggested we must be mother and daughter and both of us gave her the stink eye so she said, I meant sisters!

Big day yesterday. Brunch at Green's with Julie and Morgan and sisters and niece. Hotels and airport arrivals and departures.

I think my camera broke. The lens won't retract. Cull thinks she might be able to fix it. But she is cruising thrift stores at the mo.

Appointments:

Weds March 28, 10:15am - CT scan 

Thurs March 29, 11:15am - meet w Dr. Tavakoli to discuss CT scan results 

April 5, 10:45am meeting/exam with Dr Nag in Santa Clara 

May 1 TBA - followup with Dr Patel in SSF

End of April TBA - PET scan

Questions for Dr Tavakoli:

1. First of all a request to be as direct as possible.
2. Is local metastases somehow better than distant, or are they the same in terms of 'odds'?
3. Discuss CT scan & moving forward.
4. Significance PET scan.
5. What is the best case scenario for my type of Stage IVb AKA uncureable cancer?
6. A social worker told me that the 5 year goal doesn't really apply to Stage IV cancer...
7. (From 1st CT scan - "Abnormal gallbladder, with wall calcification and heterogeneous attenuation within it. Ultrasound is recommended for further evaluation." ?)

Suvanna watch - Laura

What a huge diff the last three weeks has had on Suvanna! Almost her old self, again.

Kathy and Paris arrived yesterday for a week's visit, Paulette scooted back to the OC after a four day visit that evening, and I am on a train home to Fresno...

Had a great lunch which included Julie and Morgan at Green's, and watched a great video, I am a Cyborg, But that's OK. (Korean)

Hope you like the pics. Laura

Paulette's Blog

Paulette started a blog a couple of days ago. Here are her posts about visiting. (BTW I liked the cancer movie.)

Po's Thursday post (Thai massage)

Po's Friday post (Hike)

Po's Saturday post (Rainy day & movies)

Hike in Pacifica Yesterday