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

THAI MASSAGE ROCKS

photo from the la nee website

My last post is an example of one that I didn't spend much time on, and that I read later and didn't like. I need time to get the balance of being candid with not wanting people to unnecessarily worry about me.

I had a great day. Paulette and I went to a new place up the street, very nice, La Nee Thai, that offers traditional Thai massage. It's $45 during the week for an hour Thai massage.

They give you a sheet to write the pressure you want (Gentle, Medium or Strong) and circle the parts of the body you want them to focus on. There was also a section with checkboxes next to conditions, such as asthma, arthritis, and...cancer.

I did the right thing in that I did not check that box, since there isn't anything they can do or not do about it. All it would do is potentially mess up the massage! I circled both Medium and Strong. And this woman called Kai kicked my ass! She also asked several times whether it was all right, which is partly why it was. When she stood on my shoulders, crushing apart my shoulder blades and my lungs, it was hard to answer, Good...

Margaret Cho and Depression P.S.

I finished Margaret Cho's book I'm The One That I Want last night. Maybe the publisher figured they'd sell better if the title was the same as her super popular standup show, but it was not primarily comedy. It's a memoir about her childhood in San Francisco, fame, alcoholism, drug addiction, her love life, and the interplay between Hollywood and self-hatred. Much darker than Bossy Pants. Then I watched some of her show from the 90's, All American Girl, on Youtube. She wrote that when she was doing that show, she was starving herself and high all the time. I wouldn't necessarily have recognized her on the show if I hadn't known it was her. 

On a more personal note, I don't want to overstate my depression. I felt that in the interest of balance I should mention it. Apparently depression very commonly happens post-treatment. I am working with it, it comes and goes. Looking over past blogs I realize there is real progress - for example, no more terrible clam. I have a fear of having to do chemotherapy...but come to think of it, my hair falling out and being nauseated sounds way better than being burned by radiation. 

Anyway here are two pictures I took at acupuncture yesterday. 

Hello, Depression

Filoli gardens

It's time for me to plan to do something different than growing frustrated in San Francisco waiting to find out my projected life expectancy...you think?

Still somewhat on the fence but may try to get on this retreat, and go visit my folks in Southern California.

April 18-27: Spring Insight Meditation Retreat with Chi Gung
Joshua Tree Spiritual Center, Yucca Valley, with Jack Kornfield et al.

Just need a backup plan if I don't get on it. Maybe a road trip and some kind of solitary retreat...

Paulette will be here tomorrow, and Kathy and Paris (niece) on Sunday.

The Left Ischium Etc.

Mildly generous uterus care of
http://www.eatdancelive.com/2011/03/yes-your-period-can-be-fun.html

This is my 75th post on this blog. Who knew that all it would take was cancer to make me prolific...

I got a 120 page PDF file recently containing some of my medical records from Kaiser. It doesn't include a lot of things, such as email correspondence. It's mostly about the scans. Anyway, apparently I have a "mildly generous uterus", so that's something. I had no idea how many doctors there were behind the scenes interpreting scans etc.

It is very technical so some of it probably won't make any sense but I will try to post some pictures that will help. It clarifies what kind of info comes from each scan.

Gynecologist's note from my visit from last week:
"My exam as compared to last exam by gyn oncologist suggests significant shrinking of tumor."

The cut-and-pastes are below. I bolded stuff I was interested in or that summarized more cryptic stuff. 

FINAL PATHOLOGIC DIAGNOSIS
VAGINA, PROXIMAL ANTERIOR WALL BIOPSY (this was done on 11/14/11)
- INVASIVE MODERATELY-TO-POORLY DIFFERENTIATED ADENOCARCINOMA

The urologist wrote:
Anterior vaginal tumor involving the right posterior bladder neck; this appears to be a tumor eroding into the bladder base from an external primary source.

CT SCAN - CHEST ABDOMEN AND PELVIS
11/21/2011

The lungs are clear with no pulmonary nodules.  The heart and mediastinal structures are unremarkable.  There is a 3 cm left breast cyst.
There is 1 cm cyst in the inferior aspect of right hepatic lobe.
There is a 4 mm hypodense focus in the medial segment of left hepatic lobe, just anterior to the gallbladder, which is too small to characterize. There is wall calcification of the gallbladder.

There is heterogeneous attenuation within the gallbladder. There is no biliary ductal dilatation. The spleen, pancreas, and adrenal glands are unremarkable without focal mass.  Kidneys demonstrate  symmetric uptake of iodinated contrast and are without focal mass or hydronephrosis.
Stomach and bowel are unremarkable.
The aorta and its major branches are unremarkable. Urinary bladder is unremarkable.  The uterus is mildly generous in size. The ovaries are grossly normal.
No aggressive osseous lesions are seen.

** IMPRESSION **:
1. No evidence of metastasis in the chest, abdomen, and pelvis.
2. Abnormal gallbladder, with wall calcification and heterogeneous attenuation within it. Ultrasound is recommended for further evaluation.

From here http://home.comcast.net/~wnor/pelvis.htm

12/20/11 PET/CT SCAN
[not sure why there is so little info with this one.]

1. The vaginal mass is metabolically active in keeping with malignancy.
2. There is one hypermetabolic right presacral lymph node in the pelvis which is probably metastatic.
3. There are several hypermetabolic lytic lesions suggesting metastatic disease in the pelvis involving the right inferior pubic ramus, the left inferior pubic ramus and left ischium.

12/28/11 XRAY PELVIS


** FINDINGS **:
There is some mild mottling in the ischium and inferior pubic rami bilaterally but there are no discrete lytic or blastic lesions seen. There is no evidence of cortical disruption. The soft tissues are unremarkable. No soft tissue calcification.

** IMPRESSION **:
Slight mottling of the inferior pubic rami and ischii.  No frank destructive lesions

01/13/12   MRI PELVIS WITHOUT AND WITH CONTRAST

** HISTORY **:
Newly diagnosed stage IV B. (T3/4, N1, M1)* adenocarcinoma of the vagina, status post biopsy. [see note at end about staging]


** FINDINGS **:
...There is a heterogeneous mass that seems to be centered at the anterior aspect of the lower third of the vagina, also with involvement of the middle third of the vagina. Upper third of the vagina and cervix not definitely involved. It is located immediately posterior to the inferior/posterior bladder wall, which appears somewhat irregular with suggestion of tumor erosion through the bladder wall at this location. Urethral involvement cannot be excluded. Tumor extends inferiorly to the level of the lower aspect of pubic symphysis. Exact measurements are somewhat difficult to delineate but tumor appears to measure at least 6 cm superior to inferior extent, 5 cm left to right extent, and 2.8 cm anterior to posterior extent. No definite involvement of cervix or uterus. Endometrial lining appears normal. At least 2 small intramural uterine fibroids present, neither larger than 15 mm in size. Ovaries appear normal bilaterally.

There is a mildly enlarged and homogeneously enhancing abnormal lymph node in the right posterior perirectal/presacral region, for example image #1 on series #10, measures roughly 11 mm in size.
Other pelvic and inguinal lymph nodes are likely within normal limits for size and appearance, including a 6 mm right pelvic sidewall lymph node.

Several bone lesions are present concerning for metastatic disease. For example there is T1 hypointense focus with enhancement in the mid to anterior aspect of right inferior pubic ramus. There are similar T1 hypointense foci with increased enhancement involving the mid and posterior aspects of left inferior pubic ramus as well as left ischium and left ischial tuberosity.

In addition there is a 2.5 cm circumscribed T2 hyperintense, T1 hyperintense lesion [bright spots show areas where the tissue contains more fluid than normal for the tissue type and pools of free water. Tissue that has a higher concentration of water indicates that some form of damage has occurred in the area causing the edema that is part of the body’s repair process.] in the sacrum at the  S1 level, slightly to the left of midline. There is also a small subcentimeter T1 hyperintense, T2 hyperintense focus immediately adjacent to this in the sacrum at the S1 level. Both of these lesions have characteristics consistent with hemangiomas [an abnormal buildup of blood vessels], and do not have the  T1 hypointensity of the lesions seen in the pubic rami and are not felt to represent metastatic foci, particularly in the absence of abnormal FDG [Fludeoxyglucose, radioactive sugar injection for contrast PET scan] activity at this location on the prior PET CT scan.

** IMPRESSION **:
Heterogeneous malignant appearing mass centered at the anterior aspect of the lower third of the vagina with probable extension into the posterior aspect of the bladder base, and with probable metastatic right posterior perirectal lymph node and with several bone lesions consistent with metastatic foci.

*More About Vaginal Cancer Staging (from cancer.org)
(Mine is T3/4, N1, M1) 
...If it has any T and N rating, and M1, then it's Stage IVB.

Tumor extent (T)
T1: The cancer is only in the vagina.
T2: The cancer has grown through the vaginal wall, but not as far as the pelvic wall.
T3: The cancer is growing into the pelvic wall.
T4: The cancer is growing into the bladder or rectum or is growing out of the pelvis.

Lymph node spread of cancer (N)
N0: The cancer has not spread to lymph nodes
N1: The cancer has spread to lymph nodes in the pelvis or groin (inguinal region)

Distant spread of cancer (M)
M0: The cancer has not spread to distant sites
M1: The cancer has spread to distant sites.

Down the Rabbit Hole

The Persistence of Memory, Salvador Dali 

I was meant to be leading part of a practice day this morning, so I set my alarm, which is one of those alarms that emits light rather than sound, for 9am, and put it on my magazine rack angled for maximum light in my face, so there was no chance of me missing the wake up call.

But when I happened to wake up this morning, the clock said 12:15! CRAP! I missed the part I was meant to be leading! How did it happen? I guess I slept through it or it didn't go off. I felt a lot of frustration. My friends no doubt were wondering where I was. Crap!

I went into the kitchen and Pasadini asked, Weren't you doing the practice day today? I said yes, but I failed to wake up, I don't know what happened, but I missed it. I was still very tired somehow so I got back in bed.

The culprit

When I woke up again it was 12:20...hm. Only 5 minutes had passed? My watch was on the nightstand - it said 10:00am. Or was it upside down? Have I fallen down the rabbit hole? I felt intensely disoriented.

Turns out that my clock doesn't really run when it's not upright, and since Pasadini wasn't even home, that conversation must have been a dream, and I probably woke up the first time at around the right time, but didn't know it. Now it was 10:00am, the time the practice day was starting, and there I was, confused, with mascara smeared under my eyes and a severe case of bed head.

I was down there by 10:30...Then I didn't grasp what time lunch was, even though Padmatara kindly wrote out a schedule for me...Being so continually confused about time kind of upset me...perhaps I am jumping back in a bit too soon?

Anyway...it was great to see people!

The Austere Breadth of a Moment

An important notice in my neighborhood

I am getting more involved with things now, the Center, and I have more energy, hence I am dealing with more irritation, depression, and anxiety. However, I feel I am working with it all fairly well.

I had some great chats today - meditation and walk Elaine, Chinese food and an IT'S-IT with Lisa Kee, and a long talk with my sister Kathy (on Skype.)

I went to a support group today at Geary Street. (And it worked, people were there!) I didn't say much; listening was rather fascinating.

Observations:

• Some of those people have dealt with the uncertainty of cancer year after year and endured A LOT more pain than I have. I felt a lot of compassion for them. One woman had had cancer 5 times, 3 different kinds of cancer! Another woman (closer to my age) had bone marrow cancer and was hospitalized for chemotherapy - seven different chemo drugs administered 24 hours a day. A guy said he was in so much pain for around a month he wanted to tear off his face...One woman who had gotten her diagnosis in February said she sometimes cried all day. One lady had had a tracheotomy...
• There was some of what I would call lecturey advice giving. I would have liked to hear people stick to their own experience. The social worker was good. At one point she said to one of them, "Let's let Bob tell us about his experience."
• People talked about the importance of letting the emotions be what they are, just crying or being unhappy when that's how it is. 
• These people have really fought hard for their lives...possibly much harder than I am capable of... or maybe that's just not my language. Mostly I did not feel I had a lot in common with them. Almost all of them were from a different generation, many years older than I.
• Two of the women said they really enjoyed being bald and they missed it when their hair grew back! 

I realized that none of those people have had any certainty about their situation. I realized no oncologist is ever going to say to me, Here's what's going to happen. The treatment tends to entail a lot of suffering over periods of time, and no one knows if it's going to work. That's just the way it is.

Misc. & No one Knows When They Are Going to Die

New tree in front of Buddhist Center building
(Catalina Ironwood)

Rigo from the monthly parking garage across the street called and offered me a space. I had asked about it in January. I guess if I felt super handicapped I might consider it. But I told him no. I might look for a cheaper space somewhere close when my handicapped placard runs out in July.

I ate a spicy burrito by accident (I mean I forgot to say no hot salsa) and had no ill effects, or nothing worse than usual. Which is cool, because I like spicy food. In general I am not eating super healthy food anymore. As evidenced by the half-pint of Ben and Jerry's last night. I'm doing all right though, not too bad. It occurred to me that maybe I've been more tired lately because I am eating less protein. I used to have a protein shake in the morning which had 20 or 25 grams of protein. Going to start doing that again.

Tried to go to support group #2 - again, no one showed up, this time including the leader. It was at UCSF and the monthly lecture was going on too, so assuming it was canceled for that. Will try again Friday.

If you mention to a Buddhist that you don't know how long you are going to live, they may tell you that none of us knows. When I noticed I was getting irritated more often lately, this was one of the examples. In addition to feeling like a lack of kindness, it might be to do with confusion about the difference between the relative and ultimate plain. Ultimately, yes, we are all in the same boat. Relative speaking, some of us are already spending a lot of our time bailing water.

I would like to go away from mid-April to mid-May. Thinking Montana, England, or somewhere else. I'm also saving up questions for the medical oncologist (about my prospects) and social worker (about SSDI).

I led a meditation at sangha night, which I really really enjoyed, had a strong sense of coming home. I felt so happy to see people. I got all misty saluting the shrine.

Gratitude and Underpants

I think that I have never naturally said the word 'underpants' in a sentence. I mean, it just doesn't sound right. Even worse: panties. I guess I was raised on 'underwear'. In England, they say 'pants' and 'knickers' to mean underwear, which I think is a better system. Which somehow brings me to my point...


Things I am Grateful For

I am wearing women's underwear today. I have been wearing big ugly men's underwear for a few months now, which probably would have been much more painful for someone who's more of lady than I am. Still, I was pretty sick of it.

I meditated today for the length of time it takes to burn a long stick of Shoyeido White Cloud incense, my favorite, with one rain spattered window open. Rainy warmish San Francisco air is nice.  

I slept 'til 11am and felt great when I woke up. Grateful that I can sleep as much as I want.

And Paramananda & I managed to connect on skype today...

I Went To A Doctor Today...

An iris in Glen Park yesterday

...But what can I really say about it? No infection, no virus, just some previously worrying radiation-induced bumps. Met a nice doctor called Jessica Matchett who will be  my gynecologist, should I ever need a doctor who is not an oncologist.

Had a nice walk to Noe Valley with Irene. And one yesterday in Glen Park with Danamaya.

Otherwise...Worked for an hour or two on the Center website the other day, the first work I've done in a long time. May have a stress reduction gig downtown next week which will be good.

I seem to have hit a multiple day wave of extra tiredness. Three weeks today since last radiation...

This Is My Bed

Did someone win the Super Bowl? No, that was a while ago. Lots of horn honking going on outside right now.

Sometimes my bed has a lot of stuff on it, which I often move to one side. This sampling of items  includes a wonderful scrapbook that arrived a few days ago from Cambridge (UK), sent by Maitridevi, which includes photos, poems, notes and other art "From Everyone at the Buddhafield Retreat 2011." This was the wonderful month long meditation retreat last summer that took place in a field in Devon...I got choked up when I opened the box.

I'm reading King Dork by Frank Portman. It's the first book I've actually been interested in/enjoyed in a while. I also got the book, I'm Good Enough, I'm Smart Enough, and Doggone It, People Like Me!, Daily Affirmations by Stuart Smalley, which isn't that funny, but I do love Stuart Smalley (AKA Al Franken) so. Watched some of The Life of Birds with Richard Attenborough last night. Otherwise, it's just comedies, I don't seem to be watching (or reading) anything else. Also, Ivor Cutler, what a whack job! (Thanks Dayajoti!)

Another point of view

Sometimes I wake up in the night and eat oranges, like some kind of crazed fruitarian vampire. I'm still dealing with some new issues of hassle and pain that seem to emerge often, but I am slowly getting some energy back...time to start worrying?

Support Group...Not

Some sky, with wires, poles, and pigeons

I went to a support group yesterday in South San Francisco. Bad news is, no one but me showed up. I told the social worker, Renee, that I wasn't even sure what I wanted to talk about, just that I didn't know anyone else with cancer....Good news is we ended up talking for an hour and a half. She gave me a bunch of advice and resources. It was great. While she doesn't have cancer (as far as I know) she talks to a lot of people who do, and their oncologists...

One of the things I told her was that I wasn't particularly afraid of dying, my fear was more around quality of life and a potentially constant struggle with cancer. She said that 'spiritual' people by which she meant people who pray or meditate, all spoke in a similar way about death. She said some other people can't even say the word. All of which I found surprising, but no doubt I am fairly out of touch with the average Joe as it were.

Cafe La Boheme March 9, 2012

She also said that sometimes oncologists don't tell their patients bad news, or they say they don't know. (But if she asks the oncologist about a patient, they will tell her.) She thought it was because they were uncomfortable talking about it. Usually medical oncologists (e.g., Dr Tavakoli) are better at it because they do it more and have more of the big picture than, for example, a radiation oncologist. She said it helps to ask very specific questions, and if you get a bunch of different answers, to take something in the middle. All of my doctors have said they don't know...it seems like they don't.

Examples of good questions

• Do you foresee I'm always going to be on chemotherapy?
• If I don't do more treatment, how long would I live?
• RE more chemotherapy - What is it buying me? What if I don't do it?
• What would a decline with my type of cancer look like?

Apparently the five year magic number doesn't really apply to Stage IV types such as myself.


Vacations

• Take a vacation 'between treatments' (This is how she referred to patients...including me. This is not how I had been seeing myself. Now it's just another question that can't be answered right now.)
• Refundable tickets
• Not too remote (close to a hospital)

Disability Insurance

Cancer patients who provide their medical records can usually get SSDI (Federal Disability insurance) in a month (usually takes 6 months). I can get SSDI and SDI (State disability insurance) at the same time (until State money runs out). Also, up to $1,000/month income is allowed while on SSDI. The worst, she said, that can happen, is that you get it and then you start working again so you cancel it.  I want to apply for this soon.


General advice

• Wouldn't think about making HUGE changes, eg. a stressful fulltime job.
• Think about doing things I enjoy, friends, laughing, vacation. 
• Think in terms of...simple....de-stressed...money...stability.

Mostly Free Classes for Cancer Patients

General Cancer Support Group weekly UCSF Wednesdays 5:20-6:50pm 353-9745
General Cancer Support Group monthly Kaiser 3rd Fridays @ Geary 1:30-3:00
Open Art Studio - Wednesdays 1-4pm Mt Zion Rm B128 885-7221 free
Yoga for people with cancer - Tuesdays 1-2:30, 1545 Divis. @ Post 5th floor; 1st 10 classes free; 885.3693
Tai Chi Kaiser - Saturdays Mar 22-May 3, 9:30a-12:30p, $53 for 7 sessions, x33450
Core & More - Pilates, Fridays, 10:00-11:30 am, 1545 Divis., 5th Floor. Registration is required for this class. To register, call instructor Jane Clark at 415.722.5314

The Human Body

Yesterday at Alan's I ended up spontaneously reciting part of a poem by Tsong Khapa, a Tibetan Buddhist master from around 800 or so years ago. Alan suggested I recite it every day. It has been a favorite for a long time. It is what I must remember.

(from memory, might not be exactly right)

The human body at peace with itself
Is more precious than the rarest gem.
Cherish your body.
It is there this time only.
The human form is won with difficulty.
It is easy to lose.
All worldly things are brief,
Like a flash of lightening in the sky.
This life you must know as the tiny splash of a raindrop
That disappears even as it comes into being.
Therefore set your goal.
Make use of every day and night to achieve it. 

Healing Marathon/Communication Breakdown

Ala Wikipedia (because I can't
find my excellent cheetah photo)

Walked with Padmatara today to Rainbow Grocery, 2.4 miles roundtrip.

I seem to have switched from downing coconut water to eating oranges - at least three a day. Trying to keep up with the acidophilus twice a day and other maintenance things I'm supposed to do, all of which has gone lately by the wayside, probably to do with feeling depressed/unmotivated and anxious. Lots of emails to catch up on...and I lost my phone (going to give it a few days.) Going to pick up the moisturizing again, the acidophilus, supplements, and walking and meditation...so much maintenance.

I forgot to say in my last post that apparently I have a 'vesicovaginal fistula'. A fistula is an "abnormal tubelike passage within body tissue, usually between two internal organs" - such as the bladder and vagina. I don't care about this so much at the moment since I don't have any symptoms from it....

I'm eating meat once or twice a week. This is because I crave protein (and have been told to eat a lot of protein), and it's too much effort to get a lot of, and varied, protein through vegetarian sources. Also I am eating what I crave, which sometimes is oranges, and sometimes is wonton soup.

I had three helpful, health-related appointments yesterday. First I saw Alan the shaman. Seeing him was really great. Mostly what he did was help me relax...for me it was very, very simple. I just felt all the various areas of tension in my body, then I felt it be relieved, and I felt that something was clearer, lighter. At some point (for Alan) a cheetah appeared, which is excellent.

Then I saw Misha the acupuncturist, and went to the chi gung class next door which is taught by a student of Larry Wong, below. The net effect of it all was that I feel both more relaxed and motivated.

Other Posts About Alan and Misha

Shaman

Chinese Medicine

Some Useful Toiletries and a Meeting with a Doctor

I was feeling really depressed last night thinking about my employment/career/etc situation. Then I opened a package that arrived from Nora in Hawaii, which among many other lovely things included the bar of soap shown on the left. Pasadini, Padmatara and I were laughing for a long time. It definitely cheered me up.

Dr. Patel and Cecilia said I am 'healing normally'. I told them all my symptoms and they suggested things to do, eg, more astringent for my peeling skin...the bathroom urgency (if you must know, both kinds!) and fatigue will probably continue for a couple of weeks. This is the biggest difficulty as it means I often don't want to leave the house!

I asked for some more specific info about what the various scans mean (the CT scan in a couple of weeks, and the PET scan at the end of May.) I had it pretty much totally wrong. The CT scan can't check the size or existence of the primary tumor. It's basically looking for something new in the lymph nodes or bone structures. In short, I'm probably not really going to know much of anything about my cancer status for three months. He also said that if the CT scan did find something Dr. Tavakoli would probably suggest chemotherapy within a few weeks, a prospect that fills me with angst.

Crystal Springs Reservoir

After the appointment I went for a short walk at the Sawyer Camp Trail afterwards, which borders what I think is the reservoir with the water from Hetch Hetchy dam in the Sierras. I need to start walking more again = more energy/less depression.  It was a warm, pretty day.

I got a massage at the Embarcadero Y again last night - thanks to Tong. This one was a blind woman called Maia - it was great.

How Am I? (Update from My Perch)

• Above is a fascinating one-minute slo-mo video of a flying eagle owl. 
• How am I? Pretty good. My hands shake. Generally I feel kind of shakey a lot of the time, kind of like you feel when you haven't eaten for a long time, except the hunger part. I bruise easily, tire very quickly, and when nature calls, I have a few minutes to make it to a bathroom...I did walk up toward Twin Peaks yesterday with Dawn, made it to the overpass which is about a mile I think (it's a very steep walk.) That felt good. 
• Then we watched the Louis C.K. show he is selling for $5 on his website. He's a comedian if you haven't heard of him. His nickname should be The Disgusting Philosopher. 
• Some degree of anxiety about my future creeping in. So many unknowns. Trying to see as an opportunity! 
• I love watching Scrubs (season 5 of 9) from my bed/perch, my favorite place.
• Checking in with Doctor Patel tomorrow at 3pm. 

Suvanna watch - laura

Left to right: Laura, Kathy, Suvanna, Paulette

For Suvanna, it is all about the napping. Everything else is just the-in-between!

Set out today to see some nature but diverted to a great Chinese food place first, on Clement, which wore Suvanna out. So, instead, we DROVE thru Golden Gate Park and Suvanna headed straight for bed.

She is awfully cheery none the less and a joy to spend time with.

I am back to Fresno tonight but the entire gaggle of Cullen sistas will be here on March 25, plus one niece!