Uncomfortably Numb

Lily's butterfly
photo by Paris Cullen

While horking down popcorn yesterday watching a movie with Cull about male strippers, my feet and hands started to go numb - also known as neuropathy - a side effect of the chemotherapy I was warned about. I think I remember that all they can do about it is reduce your dosage next time, or change drugs. If it gets too bad or goes unchecked, the nerve damage can be permanent. All I'm supposed to do about it is let my doctor know, but these kinds of things seem to happen only on weekends...

And I started feeling weird, something but not quite like my body being wired up and weirdly drunk at the same time. With random pains coming and going, and chills. My temperature was a little high. For a few moments I thought: Oh my god, I cannot take this for five months! Then that thought kind of merged into now, which can only be itself.

Figs and peaches from
the bartlett st. farmer's market

After lying down for a while, and 600 mg of ibuprofen, and beef wonton soup, the elixir of the gods, I felt fine. I might try marijuana at some point and see if it helps anything.

Cull made some chard from one of my new cancer treatment oriented cookbooks by Rebecca Katz today, very good. I will start eating less fruit. It's so awesomely tasty right now but it's pretty much a laxative, and has a lot of sugar. I've been walking every other day, and not doing very much yoga, alas. Also I looked at the chemo sheet nurse David gave me and found sun sensitivity, unlike what nurse Agnes told me on the phone the other day. You know how when you ask someone a question, and you can tell they don't know, but that they're going to answer anyway? So, sunscreen. 

...Good god endlessly talking about food and my health, etc., is so boring. But I carry on, it's all I got. 

How am I? I can't answer that question in a general way. I feel great when I wake up. Before I lay my head down again, a kind of fog will slowly settle in, and my body will do weird things which will then change.

Capped off the night watching some Louis C.K. which was great.

Blog Name Irony

From left: Me, Paris, Cull, Lo, Jon
(no crap here)
photo by Lily, (sadly) absent
from the photo!

When I named this blog I was unaware that actual crap would emerge as a major factor of my existence. It's like having a baby I suppose, except that I am now my own baby, without benefit of diapers.

Note this post from Adventures in Baby Pooping:

If you have a baby you, quite literally, have to deal with a lot of shit. And the only thing more disturbing than scooping poop clumps out of your daughter's vagina or scraping off feces caked onto your son's balls is that you will want need to talk about it to anyone who will listen, which unsurprisingly isn't very many people...But seriously, the experience of watching an unending stream of crap flow out of a human anus like it's a Play-Doh Fun Factory is so intense that you have to talk about it just to even process the trauma.

It's kinda like that for me. Except I'm not SO into talking about it. In any case, no poop adventures to report today, folks. Felt much better after seeing Misha yesterday.  She reminded me of BRAT for diarrhea (bread, white rice, apples, and black tea.) Someone showed Cull how to do moxa which she said is also good for diarrhea. Still weird & weirdly tired...about to head to a movie, Magic Mike. 

Had a great visit with family staying over on their way to Montana.

How Much to Reveal on the Blog?

Balmy Alley

Went to a Feldenkrais Restorative Movement class at UCSF this morning. It was fantastic! We did almost nothing, which is kind of the point. It is an awareness practice involving very small movements. At first I felt all tight and trying too hard. Forty-five minutes later, much more relaxed and spacious. I think it will be useful, though no class next week because of July 4th.

Shall I reveal what happened afterwards? Well. I pretty much diarrhea'ed myself before I could get back to my house. Last night I had rich and slightly spicy pad thai, which blasted through me all night. I thought it was done. Must remember to use the toilet every chance I get when I am out, especially before I get in the car! Felt pretty rough all day, hardly got out of bed. How I feel, what I can do, energy level, gut situation, seems to change quickly.

This is Day 6 of 147 days of chemo effects, at least.

My first round of treatment, during the radiation and chemo, I was mentally prepared to die. It still feels important to be prepared to die. This time, though, I am planning on living.

An Actual Cancer Patient

Note to self: Remember to take the $2.99
price tag off your new Buddha statue...

It occurred to me that before becoming one myself, I had never seen someone on chemotherapy except in a movie. They usually look like they're about to die, and they usually do.

I talked to Candradasa and Trebor today on the phone which was great. (Except that these days phones aren't that good for actually hearing someone talk!) C. is heading for the UK soon for work, and T. for a sabbatical in Berlin.

Dr. Kleckner, medical oncologist and director of thesecondopinion.org, called this morning. So went my second second opinion. As last time with Dr. Brooks, he said I am getting the standard treatment considering the rarity of my condition (type and location.) I didn't get much new info.

Some notes from our conversation:

1. "You have good doctors." Didn't think there was obvious benefit in meeting with a panel. Would be different if there was a question of something done incorrectly, or if I were missing some options, or wanted to try something experimental.
2. The likely way forward after PET scan in August would be to continue with current chemo if nodules have gotten smaller, or stayed the same. If they have gotten bigger, could try a different chemo. Scans pick up anything bigger than 1/2 centimeter, so there's always the possibility that  smaller stuff is there and not being detected. 
3. Doesn't know of any experts. He said I could ask Dr. Littell (who himself  might be as close as we will get to an expert.)  
4. A big aspect of cancer treatment is finding a treatment that the patient can tolerate. So that's part of what's being checked out for me right now. 

He also commented on what a good attitude I have. What are the other people like that he talks to? I have no idea.

Line outside Social Security around the corner

I got my award letter today for disability which will start in August, so that I will not worry about being a burden on anyone. It's less than what I was making working for the Center, which was very little...still it is a great relief. 

So the far pattern seems to be that I feel all right in the mornings, positively energetic even, then progressive crash after that. This evening on a walk with Padmatara, everything surreal, the blooming plants, the architecture, the Led Zeppelin song blasting from a parked car...

Medical Info + Food on Mars

Figuring out the pills. 

Dr. Tavakoli called this morning and said it's all right not to do the shots and just see how the next blood tests look. Without the shots, there is a 20% chance of neutropenia, which I think means neutrophils are below a certain level. He said something about an 'Area User Curve' of 5, whatever that means...Anyway, it is a huge relief. Misha was pleased to hear it too. She said if the counts are low we can up the dose of Marrow Plus (an herb blend) I am taking. 

I also called the Oncology Nurses' station and asked Agnes a couple of questions: 

1. Should I be concerned about toxoplasmosis?
   Not a huge issue but shouldn't scoop cat litter.
2. Does Carbo/Taxol cause extreme sun sensitivity?
   Not especially, but all chemo causes it to some degree, so should always wear at least 30 SPF whenever I go outside, even for a few minutes. 

Flower on the street

I managed to get to Rainbow Grocery and among many other things buy two big Turkish figs. But then, it was as if I had gone to Mars and ate a fig. Not a real Martian fig perhaps, but one you might find if you were with Doctor Who. I hope that's sufficiently descriptive. Everything tastes only slightly like itself.

For lunch I made sprouted hummus (which actually takes very little effort) and cucumbers. Also had some skyr, Icelandic-style coconut-flavored yogurt in honor of my sister, brother-in-law and step-mom who are now in Iceland. It was good, and as close as I'm going to get to ice cream. Later I made miso soup with soba and a few beet greens. So I seem to be getting back into the mode of self care.   

I feel weird but it's hard to say exactly how. My hips seem to be aching more, which is either because I'm not moving around enough, or because the chemo is making my arthritis worse, or both. I did manage to take a little walk and yoga today. Seems like it's going to be all about the digestion, finding healthy food I can manage to eat, lots of liquids, and getting enough rest and movement... 

Cat Naps, Cary Tennis, Help Update

Rare, non-napping moments

Had a few hours of normal energy early this morning for tackling the paper reduction project, but wrecked pretty much since then. Sleeping and lying in bed watching 30 Rock and Doctor Who. (Saw Tiny Furniture last night too, enjoyed it.) I am eating small amounts of food at a time, or my gut gets into knots. Sometimes it does anyway.

I've come across a couple of writers I like who touch on the subject of cancer. One is Stephen Levine (Dharma Punx author Noah Levine's father.) The other is Cary Tennis, a local who writes the advice column Since You Asked on Salon.com. Looks like he had a cancer ordeal that lasted seven weeks, though it was written in 2010 so don't know what's happened since then.  Anyway I found something he wrote, Having cheated death, I feel alive, that I related to:

Oh, I could take it or leave it, life, I thought before this happened. What’s so great about this beating heart, these heaving lungs, these eyes through which the world enters and signs its name? But threaten to take it away and see how I change: What pleasure in every heartbeat and every breath! What complexity in the color of a rain cloud! 

O gods of clorophyl and proteins: to almost lose life and then to get it back! How bright this earth now! How beautiful these faces! I stop at every stop sign and look around to see what new miracles there are. 

Tropical

I have to confess to things seeming not quite as miraculous for me, six months into it. However, I'm still doing all right, so far. I'm learning how to take care of myself better on multiple levels, ask for what I need, not expect understanding in certain ways, appreciate my life, and not get too angsty about stuff.

By the way, I don't seem to need help at the moment. Padmatara is around. Much of my family will be here Friday, and my sister Kathy after that for a few days, then Paulette after that. So they'll be taking care of stuff. (I've already made a list!) I may put some walking dates on the Lotsa Helping Hands calendar sooner...I enjoyed that last time and it was really good for me.

Other than two sun hats, the hats I have are going to be too hot once my hair falls out. I will get a wig I think (special occasions?)...but wigs are even hotter! I will probably need to get some lightish scarves...I may just try the bald look too, we'll see...a few months ago Laura and I went to a "Look Good, Feel Better" class by the American Cancer Society in which they showed us various hair options. I can't really remember it but...I see there is lots of (upbeat and less upbeat) tutelage on YouTube. You sorta want to make sure the video has a bald person, because scarves on heads of hair look different.

Must find out from my doctor tomorrow if he will agree to letting me get blood tests rather than the seven days of Neupogen shots, and thereby avoid potential bone distress.

P.S. Pasadini if you read this I hope you enjoy the photos!

Information Onslaught

Yesterday started with a pill as my days often do. This time it was Zyrtec, an anti-histamine to help prevent an allergic reaction to the chemo. Padmatara and I were at the Infusion Center by 8:30am.

We got David the oncology nurse again which was great. Started with a 15-minute infusion of something that sounded like pepsis and an anti-nausea thing which I think was dexamethasone, plus two anti-nausea pills. Then wait 15 minutes and start the three hours of Taxol (Paclitaxel). They gradually increase the rate while looking at you to see if you're having an allergic reaction, which apparently involves turning pink. I did not, which surprised me, since I often turn pink. Then the last half hour is the Carbo (Carboplatin). Toward the end the injection site on my hand started to ache. The carbo actually contains the heavy metal platinum, which is why food starts to taste weird/metallic. So I am no longer golden, I've gone platinum now, for a while. 

Stow Lake

Side effects of the three anti-nausea drugs - zofran, decadron, and ativan (originally an anti-anxiety drug) - include constipation which I am kind of looking forward to. (Or will I be saying, like Dorothy Parker, What fresh hell is this?) I was given loads of info about drugs...

Other than anti-nausea pills for four days, was also prescribed Nupogen, which I am supposed to self-inject for a week starting on Day 4. It's a growth hormone for bone marrow stimulation, to counteract neutropenia and reduce the risk of infection. Unfortunately it is also known to cause bone crushing pain.  There are a few things that can help with this. Dr. T. said 50% of his patients who took Zyrtec do not experience bone pain. There's also vitamin B6, and powdered Glutamine, an amino acid, that can help.

New infusion machine

The doctor will want to know about all symptoms - what happened and how severe. Main problems to look out for during this time:

• If temperature is over 100 degrees for 15 minutes, need blood tests to see if there is an infection. If this happens on weekend, go to emergency room. Don't take Tylenol etc., to reduce fever. 
• Constipation - Try taking senna. Otherwise call oncology nurse's station if during the week. 
• Diarrhea - Immodium only. (But Misha told me it has some toxic ingredients so hopefully won't need to.) 
• Vomiting 
• Bone pain, let doc know right away.
• Neuropathy (numbness), side effect of Taxol. Let doc know right away. 
• Minor aches and pains ok. Try Tylenol and if that doesn't work, switch to vicodin. 

Important stuff to keep track of:

• Maintain weight; keep really good track of weight. Only need to change diet if losing too much weight.
• Hydration
• Energy level
• Walk every day

Chemo schedule is every three weeks for 18 weeks, with a PET scan in the middle to make sure it's working: June 22, July 13, Aug 3, Aug 24, Sep 14, Oct 5. 

Having just gotten off retreat & sat in a small room at Kaiser for 6 hours, driving across San Francisco seemed very strange...But we made it to Misha's. She gave me loads of herbs (pills) to take, the regimen changing with the different phases of chemo, and a new treatment plan.

She has seen people in terrible pain from the Nupogen and asked if I could try not taking it but get blood tests often to make sure my blood counts are OK. She wasn't sure how often I'd need to get the blood tests. I'll talk to Dr. T and David about this on monday. If they don't go for it I'll have to start with the injections that day. Anyway, I had a treatment from Misha and felt great afterwards.

Then we went to Burma Superstar restaurant, and a walk around Stow Lake...

Here's a clip from a 60 Minutes Misha told me about featuring Dr. Lustig from UCSF and his research on sugar consumption. Start at 7:31 for the cancer stuff (focus is on heart disease before that):

For earlier posts...

...going back to December 2011, click the "Cancer Blog 1" tab above.