Suvanna watch - laura

Organizing closet

Kept it low key today, just organizing Suvanna's room. Even that wore her out, though she managed a walk this evening. It was nice and crispy cold outside and felt great. She MADE me get a salty caramel ice cream [from Bi-Rite].....yummy.

How nice for Suvanna to be done with all her treatments. She is more tired than ever and a little fragile, I think, but on the road to healing, at long last. We will do a jig shortly.

Laura

Last Brachy

The view from the radiotherapy table

Laura and I drove down to Julie's in San Carlos last night, working our way toward my last cancer treatment which was this morning at 7:30am in Santa Clara.

Didn't get the fun drugs this time. No complaints, no pain. The nurse Ann took some pictures during the procedure but they're mostly too depressing (for me) to post here. We did get to hear about a Bollywood birthday party Dr. Nag had with his daughters where dancing was required. Ann said it was the funnest party she had ever been to.

Laura and Jules went to Starbuck's and the Container Store during my treatment. Apparently it took a bit longer because Dr. Nag's intern inserted the needles (perfectly!)

We went for falafels at this place Julie knows in San Jose from college, and I felt very shakey...then nausea, went ghostly pale. Not sure if that was because the meds were different. Anyway back at Julie's, went into a deep sleep for hours. Feel fine now though still a little shakey...so I'm done. It's hard to get excited about it since I am getting more tired and nauseated, and have an infection. Still...

Tomorrow Laura and I will do some organizing/purging...

Complaints About Going Out, and Xantham Gum

Helsinki 2005

My massage was wonderful yesterday, but made me realize the degree to which leaving my house for more than, say, half an hour, causes some anxiety. Yes.  My bladder is messed up so I have to pee often. I do not have a normal degree of bladder or bowel control. Plus pain, special gear I need to keep with me, and getting car sick...My friend commented that it's like having a baby! Anyway it was good to spend some time with Tong. I also managed to get in my Costco fix which I need around every two years.

Today I did pretty well. Dawn came over in the morning and made Padmatara, Pasadini and I yummy cornmeal pancakes and eggs. Then Dawn and I meditated, which was wonderful, and wandered around the neighborhood a bit (not too far!) It occurred to me that I could set up meditation buddies on Lotsa Helping Hands website.

If I knew where I was going to be living in 6 months, I'd find a book on all the food additives and what they are. For example, xanthan gum. So much weird chemically engineered stuff goes into food.

Nap time.

Tired

Lilac lane, on a walk with Rochelle
Notice the insect in front.

Had a nice skype chat with my sisters tonight. I bought Premium and it didn't make any difference, we still weren't all on video...Still, it's nice to hear their voices, and the video worked with Cull who is the one furthest away.

I took out the recycling today and had to take a nap afterwards. There was a lot, and we have a big staircase, but still.

Wrote out a schedule today of pills to take. It helped a lot. Last antibiotic tonight.

Tong got me a Thai massage tomorrow at the Embarcadero Y which I am really looking forward to. So much tension in my tired body.

True Confessions: How I Feel About Other People Complaining

I am very fond of primates -
that's why I like you!

There's a great comic about this in the book Cancer Has Made Me a Shallower Person by Miriam Engelberg. By the way I tried to look up something about her and was surprised to find out she has been dead for 6 years.

It's reasonable to think that I would be judgmental about your complaints...well, maybe it's reasonable. I have occasionally been impatient with repetitive whinging but I think that has been more the exception. These days every time I hear a problem someone has it sounds really bad. I think if anything I have more empathy. Sure, the complaints come from people who don't have cancer, but surely there are other ills. Recent examples: serious concerns about money; bad health and pain; all the mental pain around comparing oneself to others and feeling threatened and insecure; worry about one's kids; mental illness; relationship ending...I see how critical of ourselves and anxious many of us are - it is a big area of sympathy for me. How many things do you do that you feel at least vaguely guilty about? How many things are you worried about? Remember even with cancer I'm still Auntie Suvanna!

Painting by Aloka,
a member of our Buddhist Order

I have become a lot less critical of myself since my diagnosis. This is at least partly from having somehow become psychologically a lot simpler...but I notice how I can just do what I need to do (say 9 out of 10 times!) and not feel conflicted or guilty. Now I want to lie down. Now I'm watching a movie in the middle of the day. Now I'm canceling something. Now I'm on retreat doing virtually nothing on the program! Now I'm eating something that may not be great for me, but I'm not going to sweat it...Possibly I don't have as much energy for criticism (and other more psychologically complex functions). Once I have more energy I may pick it back up again, as if retrieving what's familiar from a luggage carousel...

This is a bit off-topic but I do think I need to express my needs more clearly. Sometimes. There are things about my experience that other people are not going to get unless I spell it out, and I don't always do this. For example that I can't really be in the sun. That certain foods can (later) cause me pain. In a way I am very healthy, but tire very quickly, and am rather physically fragile. People know this in general of course. I probably need to know it a bit more. I am not used to communicating needs so much, or having so many to pay attention to. 

Anyway tell me your troubles if you would like to talk about them. Most of the time I deeply prefer them to mine.

Notes from the Last Chemo

sculpture by a member of
our Buddhist Order, Nagasiddhi

(I have to confess to having spent 30 of the minutes of writing this while sitting in warmish bathwater, which is part of the Rx. Super careful about electrocution. As has been pointed out to me more than once, dying in a stupid way at this point or possibly any would be...unfortunate.)

Julie and I went to chemo today at 8am. We had some excellent very fancy cheeses Rochelle had brought for me and some fresh pineapple Julie brought. We covered the floor with crumbs, while watching a couple of episodes of "I Love Lucy" (and a very interesting cigarette commercial featuring a cartoon Lucy and Desi from the '50s.)

I've had a private room every time I've been there which has been awesome. My oncology nurse David said I lucked out that there weren't new patients during the times I was scheduled. I should have gotten a picture of David who has been both super competent and entertaining. Found out he is fond of toffee, really should have brought him a prezzy, thought that yesterday with the radiation folks as well...

The formerly illusive Dr Tavakoli dropped by. He was meant to be my main doctor but disappeared for a month right after I met with him for the first time. There was mystery around what happened - he did not tell anyone - well not David anyway, and the radiation oncologist Dr Patel. He seemed to have lost some weight and he seemed a little sad, I felt sorry for him. I noticed a very slight interesting accent which I did not detect when I met him before. I'd like to know his story, where he comes from...but I suppose will not ask. He is my main doc moving forward. Once I get my HDR (High-dose rate brachytherapy) next week, I will make an appointment for a CT scan and one with him the day after to talk about it. This can be a couple of weeks after...so say mid-March.

This brings up the whole area that I have thus far with little effort successfully avoided: speculation about what is going to happen. It is clear that for all kinds of reasons my life will [continue to] be drastically different from how it was a few months ago. And even though I've been incredibly low energy, I am antsy to...do (non-cancer related) things. Will I live in San Francisco? Will more treatment be proposed and if so, will I do it? When I stop working for the Center (I was laid off - given 6 months' notice - shortly before I got my diagnosis) will I get a regular job? What kind? Will I move in with someone in my family?? Will the tumor be completely gone? What about the other 'local metastases'? I do know that even if the tumor is gone and the eventual PET scan shows all clear, it doesn't mean I'm done with it. Five years.

I 'graduated' EBRT radiation on Mardis Gras.
Sadly I didn't get a chemo certificate on Ash Wednesday,
(just some info on what kind of candy the nurse likes!)

Anyway, Julie and I had lunch at Udupi Palace and I splashed out with a mango lassi which I drank in about 1 minute. Balanced by really good unspicy creamy tomato soup. Liquid - yes. Blenders are my friend.

My walk date was canceled which was blissful, slept very deeply for a couple of hours. Also watched What's Eating Gilbert Grape? which I enjoyed (again.)

Rochelle brought by more excellent snackage with a "Weekly Treat" chart for me to fill out things I like etc! She said my illness has brought out the Jewish mother in her which she didn't know she had: wanting to bring me food. Lucky for me!...Pasadini made some nice simple borscht-like soup and we watched this crap documentary "2012 an awakening" which we both enjoyed.

I took my first Cipro this afternoon (due to not being able to eat dairy at the same time) for my urinary tract infection. Since I saw Misha the pain is not as bad and there is no blood. I'm learning all the things that help with the different kinds of pain...also need to have the energy to do it, and remember all the stuff to do, and when to make sure I have the stuff with me. I haven't taken much of the vicodin at all, I haven't mostly felt I've really needed it. I'm kind of a minimalist when it comes to taking medication I think. Definitely as needed, not so into the 'just in case'. My inner thigh skin however is dark red and blistered.I'm tempted to post a photo...but apparently my cancer blog self disclosure has its limits.  Certainly in some places anyway I look like I'm about 5,000 years old. Or let's not exaggerate and say 500 years max.

A Weekend Retreat + Medical Monday, Fat Tuesday

Day 3 of Retreat
Being on retreat is wonderful, and also difficult. Sleeping 15 or so hours a day/night, and much of the food is not right for me which means it causes pain (forgot to give guidelines for food.) Of course I never know for certain the causes. I was laying down in my room and couldn't stand up without almost passing out, so waited a couple of hours before I could stand up and walk outside. Danamaya came back with me and was very helpful as always.

Day 4, 10am
Feel shakey, weak, and moving slowly. Dosed up on zofran and decadron to prep for the ride to Redwood City for blood test today. Too tired to take pictures. I had some other observations about the retreat but too tired to recall them. Did have a cool dream yesterday about a huge house way up in a huge tree...

I was trying to think of what radiation feels like, the cumulative effect of radiation. You don't feel anything when getting the treatment – it's like the sun. You can lie in the sun and not feel yourself getting burnt. And that's what it feels like at this point – the skin is badly burnt and blistered, and the insides are burnt too, and raw. Which  can feel anywhere from neutral to itchy to achy to burning (as if sprayed with pepper spray) to razor blades...

6pm
Zipping down to the blood lab ended up being a 4 or 5 hour odyssey...The lab at Redwood City Kaiser was closed for whatever holiday today is. If you're ever looking for creepy topiary, however, I recommend it. Anyway got blood drawn in South San Francisco and had many good chats with Viveka in the car. Taking the anti-nausea stuff this morning was key I think. Also not eating anything that may cause trouble. That list is long.

After peeing without any pain for a day or two the pain is back much more intensely and I'm also peeing blood. Slept around 3 hours.

Home at Last
Lovely end to the retreat, with everyone sharing a little about how it went for them. It was a "Western Region Women's Order Mitra Retreat" in case that means anything to you. There were several people from Seattle, a couple from Canada, and one from Montana, plus us San Francisco folks.

Karunadevi brought me to my last radiation appointment (with a Mardi Gras theme) on the way home from the retreat. We also talked to Cecilia and Dr Laura Millender (filling in for Patel), then to the other SSF Kaiser (where I was yesterday for the blood test) for a urine test, which came out positive for a UTI, probably because of preventative stuff I didn't do on the retreat. Then we had an excellent lunch at Fresh Choice. I found out I'm not invited anymore to be on the team for the October GFR retreat in Mexico (more than enough people have appeared including some Spanish speaking people).

At 4 Robin brought me to Misha's where I told her my woes. Went into a very deep sleep on the table and felt wonderful when I woke up with no pain.

Tomorrow, last chemo, and antibiotics...

A Terrible Clam & Misc.

I will be on retreat  until Tuesday, yay! Packing is kind of challenging since I am knackered and have half a brain.

Had a sort of rough night last night - couldn't sleep until about 4am and very very itchy. My body full of tension. However, today, no pain, no itching, felt pretty good. Condition subject to change.

Had fluffy cornmeal pancakes for breakfast. With SYRUP! That's what I call splashing out. Also found out you can't bring quorn sausages (if you don't know what they are, nevermind, you're better off) from England to the U.S. without risking a $10,000 fine. This is a great tragedy.

The docs say my tumor is shrinking. Misha felt my pulse today - which in Chinese medicine is 3 fingers on the edge of your wrist, not about blood pressure - and said my 'tumor pulse' was very different, I believe she said much weaker. I hadn't told her what the doctors said. So that's good. I hope, obviously I guess, that the tumor is gone after 3 months, and I don't have to do any more treatment. Cancer treatment at least at the point I'm getting to now doesn't leave you with much of a life.

Typical retreatants driving to a retreat

Dr. Patel clarified more about the immunity thing. Apparently chemo patients can get very susceptible to really bad infections, pneumonia, etc, just from catching a cold. He said my level is that I might be slightly more prone to catching someone's regular cold.

Did manage to meditate today which was great. I really love meditation, it's amazing that I have pretty much dropped the ball on it. I do a lot of mindfulness practice and reflection, but now feel the need for the formal stuff too, especially enjoying sitting on the floor again.

Oh yes I remembered what I was going to write about. My friend said when she witnessed a woman giving birth, that the woman commented that her vagina looked like a "terrible clam". I know how she felt.

Found Out Some More Stuff...Then a Forced March

Favorite aquarium - on Clement Street

Went with Dhivajri today for radiation and met with Dr Patel.

But first, things I could be doing more of, or even doing a little of:

1. Drinking corn silk tea (preventative, blocks bacteria in bladder) 
2. Applying tons of moisturizer to areas that are NOT currently troubled (was suggested 3 times a day but i sort of forgot about it)
3. Start meditating again, and do tai chi from my DVD. Every day. 
4. Sitz baths every day, see below. 
5. Other things I may have forgotten about

Dr Patel: 

1. I have *3 more days* of external radiation: Thursday, Friday, and Tuesday.*One more* chemo on Weds, and one more internal radiation on Feb 28. THEN, healing from the radiation etc. Then we wait about a month (end of March) and get an exam and a CT scan which is partly to see how things are healing from the radiation, and partly to look at the state of the cancer. Dr Littel who I haven't seen for ages will also reappear. Three months from the end of treatment (end of May), things should have healed/settled down and I will get a PET scan, after which I will either find out a new course of treatment, which I think will be a longer round of chemo (bye hair!), OR if all's clear, exams every 3 or 4 months for a year or two, then every 6 months after that.
2. He gave me an exam, which just means he looked at the state of things for a few seconds. He said it was 'normal' (all things considered.) Suggested a sitz bath 30 minutes a day, for which water is just fine, but salt is ok too and some of his patients have sworn by witch hazel. Decided not to get the burn creme he prescribed, remembered I got burn creme from Misha ages ago so going to try that first.
3. It's all about the lists today. 

Chemotherapy with Padmatara: 

• We're not really good chemotherapy tourists anymore, taking pictures etc. as if for first time on a foggy cable car ride...good egg salad sandwiches though from the Kaiser cafe, a visit with Tong, and a few episodes of Nurse Jackie...  

An excellent forced march with Shantinayaka:

• Who forced it? I did, I asked Pasadini to put it on the helping calendar. With the radiation thingy in Santa Clara yesterday and chemo today, I've pretty much been on my back, or sitting in a car or chair, the last two days. So I pried myself from lying on my bed and we went for a walk up the hill past Dolores Park and back and I felt SO much better and energetic afterwards. Most of the chat was about dire medical situations. Note to self: Must expand conversation topics. 

In other news:

• Why am I so spaced out? I can barely keep track of things (and I'm getting a lot of help.) 
• Food preferences have shifted toward liquid - soup and protein/fruit shakes (especially rasberries lately, so good!/organic whey protein powder/coco water/Greek plain yogurt). I still eat and enjoy other things of course (like Cameo cheese, yum!, and crackers) but find liquids much more straight forward for digestion. 
• A couple of people have asked me to clarify my comment, "...This brings up all kinds of issues about medical insurance for me and where I can live. But I will think about that later."...Remember that up until the day of my diagnosis I was planning on leaving San Francisco in a few months, probably to New York City for a while and then to West London if that became possible. I haven't really gotten my mind around the fact that if I leave San Francisco I will not be able to get health insurance, which effectively means that I cannot leave San Francisco. Unless Obama's "The Patient Protection and Affordable Care Act" actually happens, which is hard to imagine. So as far as I know, as long as I stay in San Francisco and Tong is happy to keep me on his medical insurance, it's not at risk. (And I keep paying him for it, and he still has his job!) 
• I created another blog - for people with vaginal cancer. I hope they can find it - Radiation Side Effects for Vaginal Cancer: Recommended Products.

Forgot to Bring my Camera, Then Again Things Weren't as Trippy as Last Time

2009 Yosemite - irrelevant but cute photo x
(someone told me it's a pikachu)

I sort of like getting the internal radiation. The Indian woman anesthesiologist didn't dope me up as much as the Russian man last week, which was fine. Although those in the radiation room had to endure much more silence this week than last, poor things. From my point of view, things were a lot less trippy looking. Just another room - this one no doubt with lead walls - full of men (some of them wearing ties!) and women with my vag, doing stuff that blissfully I cannot feel. Met the physicist who is apparently kingpin of it all. They are all really nice people.

When Julie and I were talking to Anne the nurse (unfortunately the awesome Lee was on vacation as are many Kaiser employees this week), Dr. Nag came in and said hello and asked how I got on last week. I love him, and this proves (?) that it's not just the drugs (since I loved him before the shot in the spine.) Anne did tell us that she and Lee are the reason they do spinals on the brachytherapy patients. Apparently it used to be a kind of light general anesthesia.

Julie kindly gave me her bedroom last night and drove me back to the city today in traffic.
And Danamaya's tips have helped with the pain. Supplementary items include lidocaine, chunks of fresh aloe, hydrocortisone cream, vaginal lubricant, Aquaphor ointment, psyllium tablets, glycerine, suppositories, baby wipes, men's underwear, burn cream from the acupuncturist, ditropan for bladder irritation...plus things I can't think of. Got some nice books and cards from Candradasa and the European chairman's meeting.

I think the reason I like it is that, while I know what they are doing is pumping a large amount of radiation into my body via needles, the actual experience of being there, no doubt because of the drugs, is relaxing. It's also relaxing when the drugs wear off. It really does not have the side effects that the external has.

What is "Suva"? And Music, or What Passes For It.

Someone mentioned that that they figured "SuVa" was short for "Suvanna's Vagina". Of course that works for the current situation, but to clarify my intention, Suva is simply a shortest version of my Order name. Other people seem to favor Suv or Sue, both of which grind on my ears for some reason. Suvy worst of all. Of course they're all wrong, including Suvanna. The name I was given when I was ordained in Tuscany in 2001 is Suvarnaprabha, which means "Golden Radiance" in Sanskrit. My attempts to simplify it for Western people (who tend to go cross-eyed when they hear a five syllable Sanskrit name) has probably made it more complicated. But that's not what I was planning on writing about.

I resubmit this diagram
for your anatomical information

Although I do have what is called 'primary vaginal cancer', my subjective experience is not so much about the vagina anymore. The vagina is simply the provocateuse. Now the situation is more like, say...a sad trio crammed together and forced to play in a hot and airless cupboard. There is a a tuba, a piccolo, and a violin. Strings are broken, tuners are lost. The musicians have not had a drink of water for a very long time. They each continue to try to fullfil their designated function.

Lesson: If possible, do not take your piccolo for granted, or the breath that drives it. My body now seems to require an enormous amount of symptom and pain management...Shitting and peeing cause a level of physical trauma. (In the past I have used the word trauma rather lightly.) (I also usually have many hours per day with no pain, it varies a lot.)

Anyway, 7am, off to internal radiation...

Le Weekend

It seemed to me that were a lot of people at the ritual Saturday & I felt a bit overwhelmed and weepy for a while. We chanted the Akshobya mantra (with some bells and a drum that sounds like the ocean), which to me meant cooling water, and blue light. It was very beautiful. Then we did a little guided meditation and ended with the Heart Sutra and the gate mantra with offerings of lights and beautiful orchids. I was able to sit in my normal meditation posture the whole time without pain which was fantastic.

There were at least three remote participants - Dawn who was sick with a cold a few blocks away, Karen from a red low rider in the Chinese New Year parade, and Lena 14 hours away in Kazakstan!

Here's what our spring rolls did not look like.
Don't forget the shabu shabu sauce...

Afterwards Padmatara, Pasadini and my sisters made Vietnamese spring rolls and had we all had dinner downstairs with Shantinayaka and Elaine, then watched two episodes of Nurse Jackie...

Saturday night was tough. Woke up many times in pain. Realized as much as I sound enthused about the vicodin, taking it makes me a little nervous. Had a good conversation with Danamaya who said it takes 4 to 6 weeks of daily use to become habituated. She also gave me some other ideas of things to try that might help with the pain.

I received many wonderful gifts this weekend.

Tuesday is internal radiation #2 (of 3) in Santa Clara. I will drop off Laura at the Caltrain station today, and head down to Julie's.

My Visit with Suvanna--from Paulette

On Friday, I went with Laura and Suvanna to one of her radiation treatments. The nursing staff were really nice and when they took me into the radiation room and introduced me to the machine, all I could think of was "Fuck you". I hate that machine. Of course, this isn't reasonable, the machine is helping her.

I always enjoy spending time with my sister. Now that she has cancer there seems to be a different kind of awareness going on with me. Suvanna, being an over-achiever can't have regular cancer, she has to have super cancer, in a category all it's own: Stage 4b. The highest designation one can get. Having this type of cancer makes time with her seem different. Perhaps knowing my time with her may be limited forces me to see things I haven't noticed before. What I notice when I'm with Suvanna is that she listens rather intently to everything I say. It makes me feel as though everything I'm saying is important. That she really cares and is not just waiting for me to pause so she can say her peace. When I'm with Suvanna, I feel as though I matter.

Sign on Valencia street today

Suvanna is a reliable source of insight and she gives information is such a way that I don't feel pressure or any expectation to take her words. She suggested to me the other day to look at things with curiosity rather than animosity and see what happens when I don't try to push "undesirable" feelings away. This small thing has had a tremendous impact on my life.

My other sister Laura and I participated in a Buddhist ritualistic ceremony dedicated to Suvanna. There was chanting and meditation devoted to cultivation of loving-kindness. I cried the entire time. I felt like I was a part of something really special, something incredibly loving and kind. It didn't matter that I couldn't understand the words. The Heart Sutra and the offerings to Suvanna were moving in a way I don't know how to describe.

It doesn't do any good to wish things were different than they are but I still do. I guess nobody knows how much time they have and at some level knowing my time with her may be shorter than I thought gives me the motivation to make it all count.

I love you to the moon sweet sister.

Suvanna watch - day 11 laura

Today is a day of rest for Suvanna. She had a rough night so we will spend the day on the couch watching movies and doing drugs. Tong will be over in a bit as well.

Thank you to everyone for the wonderful ritual last night. It was very moving and affected Paulette and I deeply.

Meeting with Dr. Patel

Here is a list of potential side effects from cisplatin (alternatively, cis-diamminedichloroplatinum), the chemotherapy drug I am on, edited from Wikipedia:

• Nephrotoxicity (kidney damage) is a major concern. The dose is reduced when the patient's creatinine clearance (a measure of renal function) is reduced. Adequate hydration and diuresis is used to prevent renal damage...Nephrotoxicity is a dose-limiting side effect.
• Neurotoxicity (nerve damage) can be anticipated by performing nerve conduction studies before and after treatment.
• Nausea and vomiting: cisplatin is one of the most emetogenic chemotherapy agents, but this symptom is managed with prophylactic antiemetics in combination with corticosteroids. 
• Ototoxicity (hearing loss): unfortunately there is at present no effective treatment to prevent this side effect, which may be severe.  
• Electrolyte disturbance: Cisplatin can cause hypomagnesaemia [magnesium], hypokalaemia [potassium] and hypocalcaemia [calcium]. 
• Myelotoxicity: This agent can also cause profound bone marrow suppression.

As you can see, it isn't necessarily associated with hair loss, as Dr. Patel told us today. That was a  surprise, showing again how cancers are different, chemos are different, treatments are different. We got some fairly good news from Dr. Patel. (Here's a picture of him by the way, which does not do justice to how cute and excellent and communicative he is!) He said my immune function is not seriously low.

My magnesium & calcium counts are high, and my kidney function is very good, and I haven't had any of the other side effects from the chemo except nausea. My blood counts (white blood cells etc) have gone down a lot but are still within healthy range. I think I said somewhere that my dosage of the chemotherapy drug is low - he said today that it isn't low. It's the maximum dosage for when it's combined with radiation. (When it's not combined, it's a higher dosage given less often.)

He also gave me a prescription for vicodin, which is delightful. I forgot to say about the HDR treatment that they (necessarily) punctured my bladder. Also, after the treatment is over, especially if the tumor is eliminated, I may end up with a tumor-sized hole inside me. Hopefully, it will heal on its own, but could take several months. These ideas don't bother me nearly as much as they did the first time I heard them.

Another thing we talked about is the post-treatment timeline. I guess I had this idea that on date x, I would know what my situation is. But it doesn't seem to work like that. After a month I get a CT scan, after 3 months I get a PET scan. Then there will be a lot more info...but still it all seems somewhat...provisional. It's a See What Happens kind of situation...

Suvanna watch - Day 8a laura

This is suvanna back when we called her Lisa, circa 1967.

Suvanna watch - Day 8 laura

We saw Dr. Patel today and got a lot of great news; hair probably wont fall out, blood scores are too good to worry about any immune deficiency problems, and lo and behold, they have drugs for the pain! Shit howdy! All that college and it took this long to get to that realization! Suvanna has been a trooper but now no longer has to suffer so. You can tell she is much more comfortable.

Yesterday, Needy Bastard, Today, One with What Is Often Conventionally Referred to as God, Tomorrow...

Lake County Mushrooms,
Dec 2011

I enjoyed reading the posts from Pasadini, Laura, and all the comments. Thank you all for reading this blog, and for your love.

Yesterday when I was with Misha (acupuncturist), I thought, she's going to stop liking me. I thought I might have been a little whiney about things. (Something similar today with David the oncology/chemo nurse also.) A flash of the thought, O dear I am such a needy bastard in pain today, all kindsa pain...After the acupuncture and going a chi gung class next door afterwards, I felt much better on all levels. Some of you are members of the Needy Bastards fellowship, in which case might get this more. (Here's that blog fyi, rather undeveloped, just like us.)

While lying there with the needles, I kind of moved away from visualizing light...Because of the radiation I think, which now that I think of it is essentially light, the sun being the major source of radiation. In any case, light feels too...dry, or hot. So I changed to something more watery, more earthy, smokey.


After chemo today, drove down to Santa Clara for internal radiotherapy. Suffice it to say, the fear was misplaced. It was the best thing ever! Why? Well, during most of the 4-1/2 hours I was there, my body was super relaxed, a state it has not been in for a long time...I felt no pain (also, been a while)...I felt utter contentment...mentally went through everyone I could think of and said I love you to each...at the same time, I felt very lucid. In short, I was doped up, but felt incredibly awake and happy.  

People Meditating on Geary Street

I had all sorts of things attached to me and tubes all over the place. I'm going to try to get a picture next week: three electrodey things on my chest to get heart rate, a blood pressure thing on my arm that automatically checked it/inflated every 5 minutes, a weird red neon thing on an index finger to check oxygen absorption, a catheter, a tube thing across my nose measuring CO2 (which I think means it's just checking to see if I'm exhaling, that is, breathing.) I was checking out the monitor much of the time. My heart rate was 60-something but went down. My blood pressure was about 110/60 and was going down below 100 but then shot up to 120 at the end when they did something I could feel. Oxygen 98%. They all seemed surprised (I mean there were 5 or 7 people around a lot of the time) when I would reply to things, and had my eyes open. I asked them if it was unusual and they said yes. They told me I wouldn't remember anything, but I think I remember everything. There were panels on the ceiling that reminded me of lying on the bench at Camp Double Bear and looking up at the sky. 

Crow leaving the roof

However even after spending 45 minutes in a chill out room, I couldn't walk. But by George I was in an excellent mood. My pelvis and possibly more importantly my feet were completely numb. Laura pulled up in front and Lee the awesome nurse wheeled me out and managed to get me in the car seat, where we proceeded to get take-out Chinese food (I hadn't eaten since the previous night) and eat it in the car (I couldn't get out of the car.) By the time we were back in San Francisco I could walk. It took a bit longer to wear off than they warned me about. 

The radiotherapy dosage today was the equivalent to what I get in a week of external radiotherapy. The device they used to administer it (Lee asked afterwards if I wanted to see it) looked like some kind of medieval torture device, covered with blood...it involved 14 long hollow needles, which were delivering high dose radiation (HDR) via things that looked like wires, directly into the tumor. The length of each wire changes during the 9 minutes of treatment. They were mostly invading the tumor which doesn't actually have any nerve endings/feeling, so this was apparently less invasive than a normal exam. But a lot of blood and piss are flowing from me now (I was warned about this), as the pain returns. The feeling of ground glass seems to alternate between three adjacent apertures...must talk to Dr. P about that tomorrow. Still, it was somehow a very positive experience!

Here's more about brachytherapy from Wikipedia.

Suvanna watch - day 7

Today was a weird one. I will let Suvanna tell that story.

But, the day ended well and I wanted to share these pics. Exiting internal radiation Santa Clara, Suvanna's Chemo Penthouse vista, Early morning chemo room, Chemohand (saving the open vein for the next thing.)

OUR DAY: Suvanna had chemo in the a.m. including a visit with Tong and watching some Eddie Izzard, and internal radiation (brachytherapy) in the afternoon in Santa Clara with only enough time to get from one to the other.

After not eating since the night before we scarfed down Chinese dinner in the resturant parking lot as the owners of the restaurant shot us puzzled glances. (Suvanna's epidural hadn't worn off and she couldn't walk into the restaurant, so we ate in/on top of the car.)

Today -Pasadini

Today I woke up to the sounds of getting ready. Today my friend Suvarnaprabha is off early for another medical marathon. Today there is trepidation. Today there is more unknown. Today, as the Buddha taught, there is the possibility of waking to the true nature of reality- that all things are constantly changing. And as Laura, SP's sister says, there is a whole lot of reality right now. It is really sweet that she can be here right now, as the side effects of the treatments seem to slowly get more pronounced.

So, today I wish. I wish for ease. For kindness. For the body to reabsorb cells that obstruct with their unchecked growth. For rest that is nourishing and relaxing. For my friend and all beings to be well. May today be untroubled, and may we all experience boundless love and friendliness.

In solidarity- P.

suvanna watch - day 6 laura

Amen, sista. Got a large dose of reality today!

A rough day for Suvanna. The exam didnt bother her too much but ruined the rest of her day.

She did make it to the acupuncturist and did some Ty Chi from her chair. Hard to hold a good woman down!

Tomorrow will be her first dose of internal radiation, the first of three, requiring a spinal block. And that after a morning of chemo. yikes.

Here is a pic of the four sisters when we spent a weekend together in SF earlier this year.

Left to Right: Paulette, Laura, Kathy and Suvanna.

A Second Opinion

Laura in the Meditation Room at UCSF

Got a call last night asking if I wanted an appointment with Dr. Rebecca Brooks at UCSF this morning at 8am (thanks Elvin!) My records have already been forwarded to her. We met with her this morning and, in short, she said she would treat me in exactly the way I am being treated. This is based on data from studies on cervical cancer, which acts similarly to what I have. (What I have is too rare to do a study on.)

There was a question about whether a second chemotherapy drug called 5FU should be used. Other than having a compelling name (actually fluorouracil), hasn't been shown in studies to help.
She did an exam and said it seemed that the radiation was working (as much as she could say, not having seen the tumor before.) She said the radiation keeps working after treatment stops. In other words, the tumor continues to die and the body absorbs the dead cells.

Laura asked about when the post-treatment assessment happens. She said they usually do a CT scan a month after treatment ends (for me, end of March.) But because of inflammatory changes as the tumor dies, it can mess up a PET scan, so 3 months is the amount of time for the PET scan (end of May). This brings up all kinds of issues about medical insurance for me and where I can live. But I will think about that later.

She also said my staging was 4B (the highest stage you can get.) The Kaiser doctors never specified. This was possibly more upsetting for Laura than for me. I've kind of heard it all (even if I haven't heard it!)

Anyway I'm glad we met her, though it will mean more pain after the exam (the normal thing would be not to do an exam during treatment partly because it's too painful.) I didn't really have any doubts about my doctors but lots of other people thought it was a good idea. It was nice to talk to women doctors.

Suvanna watch - Day 5 laura

Here is a pic of Suvanna and friends on Sunday.

Too Much Excitement

Still standing

I feel deeply tired, and nauseated, today, and my nether region continues to feel like ground glass. I am nervous about Wednesday, which is when I go for chemotherapy at 8am, then drive straight down to Santa Clara (over an hour's drive) for my first session of brachytherapy, also known as internal radiotherapy, which starts with spinal sedation. Wednesday's going to be a big day.

I sent a list of all the vitamins and herbs I am taking to Kaiser last night. A dietician called me today and suggested I stop taking Vitamin C (which in large doses is an antioxidant that interferes with radiation.)

Went to a class today offered by volunteers for the American Cancer Society. It's called Look Good...Feel Better. It's pretty much tips and tricks for dealing with not having any hair, eyelashes, or eyebrows. Plus a bag of free donated makeup, some of which is very nice.

Here are the 13 makeup steps:

1. Cleanser
2. Toner
3. Moisturizer
4. Foundation
5. Concealer
6. Powder
7. Blush
8. Eyebrow Product
9. Eye Shadow
10. Eyeliner
11. Mascara
12. Lip Liner
13. Lipstick

Some of the class was fun. It was two hours long however - too long for me - and for some reason by the last 10 minutes, I went dead pale and was worried I might pass out. Then Laura took my picture!

Suvanna Watch - Day 4, from Sister Laura

Suvanna is in great spirits. She is living her life sorta as usual. She does the doctor appointment thing, sees friends, takes a walk and enjoys life. She rarely complains, though has moments of extreme discomfort that she keeps to herself. She makes me oatmeal each morning and I try to feed her anti-cancer foods. As the treament progresses she is having a hard time keeping organized and remembering stuff. That's where I come in. Not too hard a gig. She is a sweetheart. Suvanna naps often and wears out easily so I don't want to paint too rosey a picture, but she is handling it well.

We are off to a birthday party today and then tofu surprise for dinner. Paulette is visiting on Thursday this week. The doctor regiment starts again on Monday; weekends are freebees. I've attached a pic of Suvanna with her external radiation team for your viewing pleasure.

Three Poems

What Can I Tell My Bones? by Theodore Roethke

Mist alters the rocks. What can I tell my bones?
My desire's a wind trapped in a cave.
The spirit declares itself to these rocks.
I'm a small stone, loose in the shale.
Love is my wound...

Instead of a devil with horns, I prefer a serpent with scales;
In temptation, I rarely seek counsel;
A prisoner of smells, I would rather eat than pray.
I'm released from the dreary dance of opposites.
The wind rocks with my wish; the rain shields me;
I live in light's extreme; I stretch in all directions;
Sometimes I think I'm several... 

O to be delivered from the rational into the realm of pure song.

[Thanks Rochelle!]

Here is the whole poem.

---

"Cancer cells are those which have forgotten how to die" - nurse,
Royal Marsden hospital

Cancer Cells by Harold Pinter

They have forgotten how to die
And so extend their killing life. 

I and my tumour dearly fight.
Let's hope a double death is out.

I need to see my tumour dead
A tumour which forgets to die
But plans to murder me instead. 

But I remember how to die
Though all my witnesses are dead. 

But I remember what they said
Of tumours which would render them
As blind and dumb as they had been
Before the birth of that disease
Which brought the tumour into play. 

The black cells will dry up and die
Or sing with joy and have their way.
They breed so quietly night and day,
You never know, they never say.

[Thanks Tong!]

---

Cell by Margaret Atwood
     

Now look objectively. You have to
admit the cancer cell is beautiful.
If it were a flower, you'd say, How pretty,
with its mauve centre and pink petals 

or if a cover for a pulpy thirties
sci-fi magazine, How striking;
as an alien, a success,
all purple eye and jelly tentacles
and spines, or are they gills,
creeping around on granular Martian
dirt red as the inside of the body, 

while its tender walls
expand and burst, its spores
scatter elsewhere, take root, like money,
drifting like a fiction or
miasma in and out of people's
brains, digging themselves
industriously in. The lab technician 

says, It has forgotten
how to die. But why remember? All it wants is more
amnesia. More life, and more abundantly. To take
more. To eat more. To replicate itself. To keep on
doing those things forever. Such desires
are not unknown. Look in the mirror.      

[Thanks Dhammagita!]

A Late Night

This is part of what I looked like today in the radiation waiting room, photo by Dhivajri.

My various symptoms seem much better. The acupuncturists today, Misha and Elisa, were very happy with how great my blood counts are etc. Misha was saying there was a study on one acupuncture point which was shown to keep up blood counts. I feel so good when I am there.

Was wide awake until about 3am this morning and didn't know why. Read the sheet that came with the Chinese herbs (called 'Marrow Plus') I started taking. Apparently some people get a lot of energy from astralagus, some do not. I know which one I am - and that I'm not taking it at night anymore!

Laura arrived tonight, chauffeured by Ben from the Amtrak station in Emeryville. I felt very healthy today - but it's going to be a relief not to have to keep track of stuff so much!

Medical Marathon...

Token cute animal photo II, AKA Pasadini's cat

...with Pasadini yesterday. Went for radiation at 8:00am in south city, had a conversation also with Julie and an exam with Dr. Patel which was great. Turns out the state of my dryness and irritation thus far is 'normal'. He gave me some medication (ditropan) that will prevent me from waking up so many times at night to pee, and he put in the system some other medications and tests should an infection develop. Realized later that I was a bit panicky when I talked to him.

He mentioned that they only stop radiation rarely, that it has to be done sometimes but to consider that since it allows the healthy tissue to heal some, it's also going to allow the cancer to heal (or anyway, to grow.) In other words, even though I think I want a break from the radiation, I really don't! The radiation is most effective when it is steady.

Then P & I drove in a lot of traffic down to Geary St. for chemo. Found out I'm going to be getting 6, not 5, weeks of chemo, so I am half way through. (Actually in terms of side effects, not half way through yet.) I figure I have at least this month and a bit more to deal with stuff. David (oncology nurse) was telling us very funny stories...about a holiday card they sent featuring the finch lying in a manger...a nurse he was giving a ride to who shot up into her leg in his car...he was very entertaining! I also really trust him. And Tong stopped by for a chat. We didn't watch any movies, kind of have movie burnout, though we did have the private room with the nice view! I do need an entertaining book to read. Bossypants was a tough act to follow.

This picture selected because of bags under eyes,
as well as interesting curved hair horn

David also said my weekly blood tests are very good - he described them as 'abnormally normal'. He said after the third week is often when hair starts thinning...

Met with Dr. Lin who is filling in for Dr. Tavakoli, who kind of vanished without telling anyone why. (David, Pasadini and I determined that he is either in rehab or has contracted some bigtime STD.) I will meet with him Feb 22, at the end of treatment, to find out the truth no doubt. Anyway I mentioned to Dr Lin that I am getting acupuncture twice a week and she encouraged me to continue!

Walked around the Mission doing some medical type errands and felt pretty wrecked afterwards. (Still, it's good for me to walk around, and I like it.) I feel emotionally fine, just very drained. Apparently started looking very pale during chemo. It's sort of like feeling really weird or whatever...but I'm all right on the inside somewhere...

from http://media.merchantcircle.com/6811277/erden%20sushibar_full.jpeg

On the phone on Valencia street - which has a new restaurant every time I walk down it, for like, years -  I told a friend that I no longer have a vagina. What I have now is vagina jerky. (I hope that my kind readers will realize that this is a gross exaggeration. Really it's more like the sushi in that place where the sushi sails around on boats until someone picks it up, but some of them circle around too long and start looking all dry and nasty. Next time it comes around, it has sauce on it, which is also what I am trying to do. And I want to tell you that inventing humorous or any other kind of description of my vagina...isn't a usual pasttime. I just can't stop myself! I do at least amuse myself...)

But as long as I'm at it...my friend offered the helpful suggestion that I come up with a name for my vagina. Someone tonight suggested Flo, as in the southern waitress type, and then realized her error. It was very funny. I was thinking something like Hyacinth McMullen. In addition to the many excellent qualities of this name, is also apparently the name of a deceased Catholic nun. I like irony folks, and also claiming things are ironic that possibly aren't.

Lay down on my bed for a little while then spent ages putting pills in new dispenser. Was pondering elderly people, who I think are most of the people who have cancer, and who take all kinds of medication, and how hard it must be for them to get it right. Taking things at certain times for a certain number of days and with or without food and with or without other medications and not taking them all at the same time. It must be very difficult for elderly people. There is something about my cognitive function that has kind of...lowered this last month or so. I very much enjoy writing but sometimes in conversations, it seems that I am easily confused.

Pasadini, Padmatara and I are taking turns cooking a couple or so evenings a week. Tonight Dayamudra made us some soup which was perfect. My sister Laura will be here tomorrow. Feels like good timing.

p.s. I feel vaguely guilty that this post is so long.

Needs List/Hostile Takeover of Abdomen

Need a new medicine dispenser. Mine is now TOO SMALL.

I'm not writing this because I want someone to get me one. It's the sort of thing you kind of have to pick yourself.

Here's a picture of it. The cat is saying, "See how small it is?"

It is not cancer patient grade. Not that I'm taking any medications to do with cancer. It's all about vitamins, supplements, acidophilus, and Chinese herbs.

I also really need a sun hat, because I don't like sunscreen, and I like it even less now that my skin is sort of messed up from chemo. But I need to get that too. Even a small amount of sun makes my skin hurt.

And a chi gung DVD 
from
 Larry 
Wong
 at 
Wong’s 
Tai Ji 
& 
Qi Gong 
for 
Health,
 1775 
21st 
Ave.
 SF 
CA 
94122 

(415) 
753‐ 0426.


And more coconut water.

And I guess they weren't kidding when they said the effects of radiation take a couple of weeks to kick in. The last couple of nights, due to bladder irritation, I get up 8 or 10 times during the night to pee. I have illustrated my current situation by drawing in the general location of my tumor, with a circle around the areas that seem to have stopped functioning properly, and/or are extremely irritated, dried out, swollen, and itchy.  It's as if my lower abdomen were suddenly taken over by hostile aliens...who cut off the water supply.

I spoke to the oncology nurse Cecilia yesterday who made various product suggestions. They want there to be as little medication as possible (interferes/interacts with chemo)...and many topical things interfere with radiation. I'm meeting with Dr Patel today, will see what he says. I know sometimes they stop radiation for a few days in the case of really bad side effects. Don't know if mine are going to rate, since I don't have any infections.

Misha gave me some herbs to take and as usual I felt SO much better after seeing her. She was emphatic about eating more protein every day and suggested the section, ''The Treatment Support Diet' from Dr. Block's book, Life Over Cancer. Will have to get my sister to read it when she gets here! Also suggested eating white rice for diarrhea.

Today is chemo. I think it will be 3 out of 5.

P.S.  I thought this page could double as a shopping list, hence the bolded items.
P.P.S. picture frm http://www.drugs.com/health-guide/vaginal-cancer.html