A Note From Pasadini About Helping

Friendly donkey in Valderrobres, Spain, 2009

If you would like to help me when I am unable to take care of myself, and/or find out what help I need, please click here to register with lotsahelpinghands.com and request to join the online community.

More about helping on the 'Help Needed' tab.

Here is some info from Pasadini about the website:

I have set up a fancy dancy on line coordination website in order to help folks plug into how to help Suvarnaprabha out over the next few months with rides, food, etc. 

Once you go to this site you are invited to fill out the right-hand side of the form which is a Request to Join the Community. After you've done this, you get approved, then you will be sent instructions for setting a password and signing-in. Then you are good to go.  Once you sign up for a task the website will send you reminders automatically which is extremely thoughtful/useful.

I will be adding stuff as needs come up so you will notice that if you sign up now that there is only one open activity as of yet.  But please check back as once SP gets her schedule for chemo, etc. then I will add dates for rides.  She will have a car you can use (manual transmission) if you don't have your own!

Thanks much and if you need help with this don't hesitate to shoot me an email.  

Kindly, 

Pasadini.

Whale Beach

An attempt at auto-photography, Lake Tahoe

Wonderful walk today, again from the east side of Lake Tahoe in Nevada, down a wide path of towering and gnarly western redcedars. We (Julie, Dawn, and Mike) landed in a beautiful little cove called Whale Beach. There was no one else there.

We stayed for an hour or two. Toward the end of the afternoon the wind started picking up and the waves were crashing and spraying in the sun...I'll post some photos on Facebook.

My sit bones seem to ache a little more every day. Pillows are my friends. Walking is one of my favorite things to do...it doesn't seem to effect the pain either way.

It was not a long walk, but it is a high elevation (6,000 or 7,000 feet I think), and it was a a lot of sun, and a lot of cold wind. We were all completely knackered when we got back.

We had an excellent dinner and everybody pretty much went to bed. Time for me to do that too. Sorry for the abject lack of philosophical content. I'm feeling depressed at the moment about how my life might be for the next...however long. But I don't want to write about that so much.

A Walk at Spooner Lake

Mike and Dawn

It is lovely to be up here in Tahoe. Went for a 2.1 mile hike with Mike and Dawn around Spooner Lake. In the bright sun the aspens near the shore were particularly beautiful.

We saw a bald eagle, at first at a distance, flying close to the surface of the water. Eventually it flew right by us, amazing to see.

Last night I felt some pain in my pelvic bone, and hip joints. I'm wondering whether my days of not having any pain are over! It might be from driving here (sitting in the car for hours), and in fact the last time I felt it was up in Lake County, also after a long drive. Also I haven't worked out the challenge either of how to sit in meditation.

I was realizing today that it's probably more painful because of what I think: It's not just a sensation, it's the thought of cancer. I'm pretty sure this thought makes the pain seem worse. So this is my next (mental) project, to try not to add to the physical pain with my mind.

The doctors say that once treatment starts, it will help with the pain...

Optimism or Pessimism?

Here is some of what I've been reading, written by the oncologist Keith Block who has worked with many, many people with cancer:

"Bombarded with doom-and-gloom statistics, you may feel overwhelmed trying to muster enthusiasm for life. So forget all the talk of 'survival rates.' They do not apply to you. All statistics, by definition, apply only to groups, not individuals. Researchers use them to determine whether a therapy works or not, and physicians use them to help make choices among different therapies. But as an empowered individual, you should not use statistics to dictate your chances of survival." (p 5) 

I don't really have any statistics to deal with...yet I find this very sensible and encouraging...it doesn't mean that you know you're going to live, it doesn't mean that you know you're going to die - it means you don't know what will happen. And how incredibly difficult it is, to deeply not know, to be neither optimistic nor pessimistic, when there is no objective cause for either. What you do know is that you cannot control the outcome, and that what you do will have some influence. Anything can happen.

A Different Diagnosis

Here is my diagnosis from Misha Cohen's office, written up by the other acupuncturist, Elisa Angelone.

Yin
 and 
Blood
(Xue) 
deficiency 
with 
lack 
of 
Qi
in 
Upper 
Jiao, 
Kidney
 and 
Spleen
 Deficiency, 
Heart 
Fire,
 Toxic 
Heat, 
Chong 
Mai 
Imbalance


Doesn't sound too bad does it? Well, sounds better than Stage IV cancer I would say. Anyway the treatment plan is 5 pages, and they want to see me 2x/week during chemo. There are a lot of nutritional recommendations which I want to follow...I will try to find a way to summarize them.

Radiation 101

Radiotherapy Machines...

Padmatara, Julie, Pasadini, Dawn and I went to a "Radiation 101" class today at Kaiser in South San Francisco. We saw the unbelievably sophisticated and huge machine made by a local company called Varian which delivers radiation.

Then there was a slide show with several different people talking about their areas, including a Medical Dosimetrist, a behind the scenes guy who "designs a treatment plan by means of computer and/or manual computation to determine a treatment field technique that will deliver the prescribed radiation dose while taking into consideration the dose-limiting structures." [via healthpronet.org].

A nutritionist spoke for a bit. Looked at the booklet "Eating Hints: Before, During and After Cancer Treatment." Some of it was to do with managing side effects of treatment, but...for example, I can't believe they tell people losing their appetite to drink fruit punch! I'm much more confident getting nutritional advice from the acupuncturist, who says to eat omega 3's, all organic food, very different...

A social worker told us some interesting stuff - I will give her a call at some point to find out about classes for people with cancer & support groups. Would also like to go to the "Look Good....Feel Better" class offered there by the American Cancer Society. They tell you how to draw eyebrows and other cosmetic stuff. It had only vaguely occurred to me that I won't have any eyebrows, which almost seems worse than losing the hair on my head...It was nice to be there with friends. It did possibly make it less scary.

"Sugar Feeds Cancer"

Quote from Dr Keith Block:

Tumors are gluttons for glucose. They consume this blood sugar at a rate of ten to fifty times higher than normal tissues. 

This reminded me that a couple of months ago, I went to Community Acupuncture Works (a lovely place and very affordable). I remember telling Ninah that I was having *intense* sugar craving. She asked if I had had this before. I said I didn't think I had - to this degree.

So this is maybe related to 'sugar feeds cancer'. I would add, Feeding a sugar craving feeds the sugar craving. Of course this is probably true of any kind of craving. If you indulge, it may come back stronger. I have virtually no desire to eat anything with added sugar now, and less craving for fruit. Not because I know the sugar is bad for me, but because after I stopped eating it for a day or two, I lost interest. I'm really grateful for this actually, that it's not a struggle.

Alkaline Drink & an MRI

Walking out of the hospital where I got the MRI today, saw a veg juice stand and one of the juices was called "Alkaline". It was $8 for a small one - made of various greens, ginger, celery, lemon...I can't remember what else - and I sprung for it. It tastes disgusting, but not nearly as bad as some of the Chinese medicine I had for a while.

When I checked in at the hospital they told me that the bill was $1,000. This happened once before, where they said I owe them money, and it turned out that I didn't. Hopefully that will happen again this time.*

Rather than a donut (CT scan), the MRI is a tube, and while inside it I immediately understood why they ask beforehand if you're claustrophobic. And there are a lot of rapid banging sounds in varying pitches. (They gave me earplugs.) After around half an hour they took me out, shot me up with some dye of some kind, then put me back in for about 15 minutes. It was kind of hot inside that machine, was wearing too many layers, but I felt very relaxed by the end. Then I got slightly lost trying to get out of there, a bright red EXIT sign gracing every corridor. Even tried to take the stairs but I could see that after the down stairs, they just went right back up again. A kind man told me how to get out of there...and eventually, ah, outside.

*Note from Tong: Member Services confirmed you have zero co pays. Please don't waste your time if they say you have a co pay. I'll take it up with Member Services until they are sick of me. The technical name (not kidding) for the plan is a Cadillac plan...The $1,000 is the cost Kaiser charges to Fee-for-Service users...You didn't owe them a dime and it is stress which makes patients worse. I'm sorry about that.

Nonbenefits of Cancer

Here are two things that, at the moment, don't appear to be benefits of having cancer. As you can see they're both about other people!

1. When someone seems to think that they know why you got cancer - it's definitely because of something you did. They're sure it's the type of food you tended to eat, or some poisonous thoughts you had. Which isn't to say that these things couldn't have been a factor. (I am resisting the temptation to show that for me they were not.) But there are also other possibilities - genetic, environmental - and no doubt others we know not of. My working theory is that imbalances in my body caused by perimenopause - depletion, depression, losing a lot of blood - were a factor. At the end of the day, I have no idea why I got cancer. Five oncologists don't know why I got cancer. Does it have to be my fault?

2. People who want to help you so they tell you (or write books that say) that you can cure your own advanced stage cancer - by drinking vegetable juices, eating tumeric, singing, being vegan, or drinking diluted hydrogen peroxide. (I'm exaggerating, but not much.) Alternatively, that you should forgo chemotherapy etc, which is what will really kill you. Certain foods are bad for cancer patients. Those same foods, claims someone else, are good for cancer patients. It has been confusing. However I have mostly chosen my path: Chinese medicine according to Misha Cohen, diet and other lifestyle recommendations from oncologist Keith Block (plus leaning toward foods that are more alkaline), and Kaiser for chemotherapy and radiation.

So these are the things that are difficult....also, it can be very painful for me when friends etc. are upset and crying. The fact is that I feel very strongly that I have to be prepared to die...In a way this is what keeps me from being depressed every day. However, I don't mean to suggest that that is some kind of precognition, or that other outcomes are not possible. Think of the Sting song, If You Love Someone, Set Them Free. But the someone is your life.

For balance, see my other post, Benefits of Cancer.

Shaman

Alan Waugh

My friend Alan* is a shaman. On his website he describes what he does as "a practice of entering non ordinary states of reality to engage with the spirit helpers and the natural world to develop relationships, solve problems, perform healings and enhance balance." Alan has also been a volunteer at SF Zen Hospice for almost 20 years.

Please do not take what I write here too literally.

First we chatted in his living room. I did mention that the lingo around cancer is 'fighting for your life'. I said I did not want to fight for my life, that the cancer is part of my body and I do not want to fight my body. That I am working on finding out what the opposite of that is. He agreed very much with this.

Then we went into his healing room (I don't know what he calls it.) First thing he did was ask me to say to the shrine my intention for healing. I didn't find this so easy at first. I did realize that on some level, I do not expect to live that long. I said something like that I wanted to heal and to be able to appreciate all aspects of my life.

Then I was lying on a cot, and he did a little chanting and...again, hard to describe. I had all sorts of images going through my head, but they were so quick I can't remember them. My lower abdomen started to hurt, and my left hip was throbbing. The pain was mild, it was more like intense awareness of those areas, down to my toes. At some point he led me through a visualization, using the breath to go into the center of the pain and filling it with love and light. I spontaneously imagined a fire, and the smoke rising from it. It was wonderful. The sensations changed into something spacious and blissful.

Afterwards he said the ceremony lasted about 2 hours, which I found astonishing. He said part of the purpose of this disease is for me to show people how to handle death. He also said there was kind of a blockage in my throat, that I need to be very vocal in expressing my needs during this time. I wasn't quite sure what that meant but perhaps that will emerge later. He said he communicated with an owl, and that there are protectors or guardians around me.

We talked about death and I was telling him how impressed I am by him having found his vocation, and his commitment to helping people heal. By the end of the session we were both crying. He said he would be there for me on my journey. It was incredibly comforting.

Here's his website: http://www.alanwaugh.com.

*Note for Buddhists: Alan was around in the early days of the Sf Buddhist Center. We became mitras together in around 1994 - he has since taken another path.

At the acupuncturist...

Thanks for All Your Kindnesses

From Afghanistan

My dad (in Southern California) sent me a big check - yay! My step mom is giving me her car and paying for parking, and her daughters are covering the insurance. These things are such a huge relief to me. And many other kindnesses have come my way. I feel so grateful that people care about me and want me to live. You might think, of course they do...but...one feels gratitude.

I was saying to Julie yesterday as we were walking in Edgewood Park....is it true that I am happier than I was before I knew I had cancer? How can that be? I suppose there is more happiness (and more sadness and terror as well.)

I wanted to post a picture she took of me from the back...I'm wearing a Grateful Dead sweatshirt around my waist, crouching over with a docent to look at a plant, and it says DEAD across my butt. Julie is too sensible to give it to me...but we laughed about it for a long time.

Meditation

I meditated twice in the Buddhist Center this morning. First time I've been in there in about a month, which probably has not happened since I moved into the building in 1994. I don't think I have meditated formally - maybe once - for a couple of weeks which has also got to be some kind of record for me. I was nervous about making an appearance and being overwhelmed. There were only around 6 people there, and it was in silence (thanks Pasadini!) so it was fantastic.

First started setting up my cushions and remembered that I can't sit on cushions. I got a chair - enjoyed meditation but it started to hurt my joints toward the end. Second sit was lying on the floor. I feel intuitively that the mildly painful sensations i can get in my left knee, and my right hip - are cancer that is not detectable yet. They feel the same way my left hip does, only subtler. It was very interesting kind of figuring out how to relate to this during meditation. Not only the pain but the fear about the pain, and just letting it be. I deeply love this process.

Chinese Medicine

Wow, for the last, say 4 days, I do not feel tired! Last night I went to sleep at around 10, and woke up naturally at about 6:30. Must be because of changing my diet? Also probably getting off the depletion/caffeine merry go round. In any case, it is fantastic. It's also good because I need energy to clean up some things my life a bit before I start chemotherapy.

Misha Cohen

Yesterday I felt so energetic (relatively speaking) that I walked downtown (about a mile and a half). Had a strange experience on Market street (around 9th St.) At one point I looked around, and everyone seemed really friendly and happy. Sure, it was a nice, sunny day, about 60 degrees. But it was the first time I can ever recollect feeling this way, that I was surrounded by random people who were very kind. I should have blinked my eyes to see if they were still there when I opened them again...

I went down there to visit Winnie (acupuncturist I started seeing before I knew my diagnosis) who lent me some books about cancer, and then have my initial consultation with Misha Cohen. She is well known for working with tough cases such as myself (cancer/chemotherapy, Hep C, AIDS) for many years. I was there for 2 or 3 hours. It was wonderful. It feels deeply nourishing/healing to me in a way that going to Kaiser does not. I also have a lot of respect for Chinese medicine and in the past it has been helpful, especially on things that Western doctors can't help with. I have been interested in some forms of Asian massage (Shiatsu and Thai) that are based on Chinese medicine...

photo by Nancy

We talked for about an hour - the two of us and an apprentice or intern or whatever*, and Nancy. She was very kind, and she knows a lot about chemotherapy and radiation, even about my specific chemo drug. Then I had a treatment, which was intense. It's hard to explain. I felt a lot of intense energy moving around in my body; somehow it is also extremely meditative. She asked me about some kind of blockage in my chest that she felt in my pulse. I said yes, I have worked with kind of blocked heart energy quite a lot. She put a needle in a point near my lower shin bone, which was rather painful, but I felt it very strongly in my left hip (where there is cancer)...

Her advice was: to meditate (which i haven't been doing, mostly because of extremely low energy and painful sit bones.) Re nutrition (I've decided I'm going primarily follow Misha's advice) She suggested I get Life Over Cancer [links to a blog] re nutrition which I ordered last night.

She suggested fish (according to recommendations on seafoodwatch.org), whey protein, organic eggs. I think she said chicken causes...some kind of congestion. (She's going to give me a written treatment plan which includes all the recommendations, which will be very helpful.) Also on the alkaline/endless sprouts front, she said Chinese medicine recommends at least lightly cooking all foods, though sanitation might have been a big influence (it's true - seems like very few cultures [outside california!] eat raw vegetables.) But I often cook the sprouts too. I don't feel like I can eat tons of raw food but I certainly like having some, carrots and turnips etc.

Some vitamin recommendations: B complex, calcium at night, 4k Vit D, superdophilus. Suggests miso, sauerkraut, kim chi, almonds and walnuts, ginger; suggests focusing on developing soups, can also heat up veg juices and make soup out of them. Congy is good too.

I'm seeing her again Tuesday, January 10 at 2:30 - will add this to my list of appointment page below.

The other woman is an acupuncturist called Elisa.

Doc Appointments

LOCATIONS
Daily radiation is in South San Francisco (Oyster Point exit off of 101.)
Weekly chemotherapy is at 2238 Geary/Divis, 8th floor. Blood work is same location, 2 days prior.
Weekly radiation (brachytherapy) is in Santa Clara.
Acupuncture is on Mission between 5th and 6th.

All the doctors, contact names and numbers are listed under the Resources tab.


SCHEDULE
Wed, Jan 18, 7:45am - first radiation + meeting with Dr. Patel

Wed, Jan 18, 9:15am-2pm - first chemo, bring snacks, book, laptop, DVDs, etc.

Thu, Jan 19, 5:45pm - post-chemo acupuncture

Monday to Friday, January 19-26, 9:15am - radiation + Dr. Patel Wednesdays
Mon, Jan 23 - blood work for chemo
Tue, Jan 24 - acupuncture TBA
Wed, Jan 25, 11:15am - chemo (Dr. Tavakoli)

Thu, Jan 26 - acupuncture TBA
[Fri, Jan 27, 4:45am - meet w Dr. Tavakoli NOT]

Monday to Friday, January 27-31, 11:30am - radiation + Dr. Patel Wednesdays
Wed, Feb 1, 1:30 - Amy Lin (medical oncologist)

.
.
.
Po visiting Feb 9-12. 
Brachytherapy in Santa Clara:
[blood test Feb 1ish]
Wed Feb 8 at 1:30 pm - TRT 1 . Please arrive here by 12:45 pm. Do not have anything to eat after 5:30 am. You may have clear liquids up until 9:30 am.
Tue Feb 14 at 8:30 am - TRT 2. Please arrive by 7:45 am. Nothing to eat or drink after midnight.
Tue Feb 28 at 8:30 am - TRT 3. Please arrive by 7:45 am. Nothing to eat or drink after midnight.

CT Scan with Tattoos + Treatment Finally Scheduled

I had 2 CT scans yesterday. A CT scanner is essentially a temperamental donut that has a camera whirling around inside of it, and you get very, very carefully placed on a table and wheeled into the center, as if you were the jam. To help you visualize I have included a picture of a turtle called Lucy who for some reason needed a CT scan. I hope Lucy has fewer troubles than I.

Writing about the details of the procedure here would be rather too intimate even for me. Suffice it to say that I have 3 dot-tattoos now. Getting a tattoo, even a tiny little dot tattoo, was way more painful than I thought it would be. They are on either hip and below my belly button, to help with navigation of radiation beams. The RN today who helped with the radiation was so incredibly thoughtful and gentle, Jeanie Wong, I *loved* her. I'm sorry I won't be getting any more CT scans, at least not for a while. I also got a lot of info about side effects of radiation.

It's finally sinking in that I'm going to lose my hair... I will get it cut short before chemo starts.
I ordered some stuff today recommended by nurses and docs - special soap, shampoo and other things.

The treatment starts January 17 with my first dose of radiation. Next morning chemo starts.

There is a free 'Radiation 101' class/tour they offer at South San Francisco a couple of days a month. I'm going to go on Thursday (Jan 12, 12:30-2pm) if you would like to join me. If you don't want to, that would be a very sane choice, but if you would like to you are welcome.

Benefits of Cancer

Mural on Balmy Alley

"life has a way of humbling you down"*

One wouldn't want to be ridiculously optimistic, and I am not. However I have noticed a few things since my diagnosis.

My life now is deeply and intuitively precious to me.
At the same time, I think I will be able to let it go when I need to.
I am able to live much more wholly in the present.
I experience my life, and other people's lives, as precious.
There is a lot more love being expressed by everyone in my life (including me).
I feel very connected to people.
I told a friend in an email, who asked me if I felt supported, that I felt surrounded by love.
My family has been generous with money, without which I could not take care of myself properly.
In a way, everything has become really simple. There's just taking care of stuff, and love.
Physically, I don't feel so bad other than feeling depleted/tired, which I have been for many months (if not years.)

I write these things not because I'm trying to be positive, but because this has been my experience, so far. It hasn't been very long - about a month.

* from 'life has a way' by anthony hamilton. this song is not particularly appropriate for this post. but i heard when on NPR yesterday i felt i must quote it and was unable to wait 'til the appropriate time...

More About Chemo

After meeting the chemotherapy doctor yesterday I thought of more questions (as happens so often) and wrote to Dr Patel who I will see today to start prepping for external radiation...here's how it went (my questions are at the bottom.)  

Hello. 

We had our tumor board meeting and Dr. Tavakoli and I were in attendance

The cisplatin is a chemotherapy agent used as both a systemic agent to treat the body as well as a radiosensitizer to help the radiation do its thing

When we give radiation - we always use the dose of cisplatin that is safe to give with radiation b/c full dose chemotherapy with radiation is too toxic (regardless of the stage of cancer) - so this has always been the plan

After chemo-radiation is complete - we let you recover for a few weeks and then reassess the situation (with exam and imaging) - and then based on that - Dr. Tavakoli can make recommendations on the role of more chemotherapy

Regarding the bones - we are treating the bones with radiation - so that will give us some mileage and should take away your pain AND the the bisphosphanate is the correct drug to treat patients when cancer has gotten to the bones - it can strengthen the bones that are involved and potentially prevent new spots from forming

Regarding the herbs - sounds fine to me (thanks for the info) - I would ask to just avoid any herbs or vitamins with high doses/content of anti oxidants such as Vit E and Vit C (a once a day vitamin is okay)

We can talk about all of this more in person and we can also set you up with our dietician to review the herbs if you would like

Take Care

Milan

----- Message -----
From: CULLEN,LISA D
Sent: 1/5/12 12:39 AM
To: MILAN DILIP PATEL MD
Subject: one more thing

Hi Dr Patel. I have a couple of questions I thought I would give you advance notice on (even though maybe I don't need to.)

- Dr Tavakoli told me I'll be getting cisplatinum which is a radio enhancer. Didn't you tell us we were changing from a radio enhancer to something that was going to help with distant disease? Why did this change?
- How is the bone issue (pelvic bone and left hip joint) being addressed? Dr Tavakoli mentioned Bisphosphonate but it didn't seem definite...
- is it expected that i will need to do radiation and/or chemotherapy more than once?

ok that's it at the moment! thanks.

p.s. When i was there last time the MA or someone asked me what herbs I was taking from my acupuncturist. I imagine you don't care about this that much but in case you do here they are: 

Base formula: Tangkuai root, Ligusticum root, White Peony root,
Rehmannia root, Condonopsis root, Atractylodis Macrocephalae rhizome,
Poria, Licorice root.

Added: Scute, Coptis (anitviral/bacterial), Coix, Atractylodes root
(dry damp), Gleditsia Spine, Vaccaria Seed (targets toxic heat).

Medical Oncologist/Chemo - Jan 4, 2012

Didn't get any more bad news today, or none that I'm going to tell you - ha ha!

Dr. Tavakoli did say today that my condition is so rare that there is no good data for treatment, survival rates, or...anything. As my sister Kathy said yesterday, I've always been special! I like to think of myself as the albino tiger of the oncology dept at Kaiser.

Karunadevi and Julie came with me today. I will be getting Cisplatinum, a 'radio sensitizer'. Meaning that its primary function is to enhance the effectiveness of the radiation. I forgot to ask how long it takes to administer (could be anywhere between 1 & 8 hours.)

He is not concerned about herbs or acupuncture - just advised caution in making sure there is nothing in the herbs that causes blood thinning.

A couple of things about chemotherapy side effects (will copy this to treatment section too)

• Staying hydrated is most important - not just with water, which can strain kidneys. Need electrolytes. Need to find way to do this without sugar. Found this recipe on http://lowcarbdiets.about.com: Just mix together: 1 cup (8 oz) water (not carbonated), 2 Tablespoons lemon juice, small pinch of salt, flavoring and sweetener to taste.
• Need to keep a thermometer on hand. If temperature is > 100.4 for 2 hours, OR if 101 even once, need to go to emergency room.
• My hair will fall out after a couple of weeks. I will cut it very short before I start. 

2nd Radiation Oncologist - Jan 3, 2012

Today Julie and I drove to Santa Clara for an appointment with Dr Subir Nag, who according to his bio is "one of the world pioneers in brachytherapy and intraoperative radiation therapy."

I have consistently felt that I am getting excellent care at Kaiser - but from a subjective point of view this meeting was pretty depressing. I thought I was done with...discoveries about my condition, but apparently not. I have one more meeting tomorrow with the chemo guy...see what happens there.

In any case. Today. The point today was to find out about internal radiation which is going to be part of my treatment, in addition to external radiation and chemotherapy. I had been told that internal radiation is very simple. Turns out there are two kinds, and I'm not getting the simple kind. I'm getting the kind that is injected with needles, that you need spinal anesthesia for. Why? Because my tumor is big, it is deep. (If I knew how to draw a picture on my mac i would recreate the picture the doctor drew.) Because there is cancer not only in the pelvic bone near the tumor, but in my left hip joint (which must be why I got  on my bike yesterday, went OUCH, and got off. It hurt my bones.)

I've asked the oncologists about my chances of being alive in 5 years. They say it depends on how the tumor shrinks, which they cannot predict. Aside from issues of survival, for me, there are major issues to do with quality of life. In other words, what level of functionality my body will have at the end of all these toxic blasts? The doctor told me that there is a 'reasonable likelihood' that removal of the tumor will leave a hole, called a fistula, in the wall of the vagina, the bladder, or both. The nurse practitioner, Lee, said that radiation impairs the ability of healthy tissue to repair itself. At that point, surgery is risky, can cause more problems than it solves. So you have to wait many months to let the healthy tissue return to closer to normal and then see what is possible.

This is what happens after every exam and meeting with an oncologist - this was my 4th besides all the tests and scans - they give me what appears to be super depressing news. I think, Are you fricking kidding me? It sounds like a total nightmare, again. Then, strangely, I get used to whatever they said. As Shantideva says, If you can solve your problem, then why worry? If you cannot solve it, then why worry? That is pretty much my philosophy. To practice this philosophy, I have to live in the present, because I can't know what the future holds.


Here is a nice blog post a friend told me about that I enjoyed:
Cancer Broke All My Pencils