Big eats

Dana painting on the patio.

It is day 55, and I have not been in the Cancer Center since Friday, and don't have an appointment until 7am Wednesday. On Friday my weight had dropped to 165, and the docs are getting nervous about that, so they are urging me to eat more and more often. I am trying, but with little appetite. The incentive is if I lose any more weight they will want to scope me, take a peek at the whole tract, make sure everything is ok. So, I eat every three hours.

One of the women in our writing group just passed away. She had suffered long and hard with a rare form of appendiceal cancer, and I hope the rest of her journey is filled with glory.

When people are dying that you have known it brings death closer to your mind. I find myself lying in bed wondering if the pain in my back is my kidney or liver rebelling, and even though I can logic past it, the mere fact of the death of a fellow cancer warrior raises an awareness that takes time to scar over, a reminder that cancer can be fatal Just not for me. Not this time.

What is missed

Mike and Patience check the waves.

It's been quite a while since I've been home, and I am really missing certain things. I miss Mike and John and Woody - in my mind they (Mike and John) are these gangly ten-year olds with mop tops, and every time I hug them I am surprised at how big and hairy they are. I miss my bedroom, which is very comfortable, a den of peace and tranquility. I miss video on demand. I miss that high-speed internet connection. I am crawling along on a 54mb wifi with a weak connection. I miss golfing, going out to the course and just putting around for an hour. I miss the Saturday am surf check with Mike, even though I have been too wanky to go out lately. Only under perfect conditions.

I feel bad to have tied Dana down to sitting around this apartment with me. While she is getting out a bit, she is a very social animal with lots of friends. I miss her ability to get away from me. Likewise, I miss the ability to have a disagreement and walk away, go for a walk, get away from each other for a while.

Healthwise I am chugging along, constant headaches from Prograf, a backache the last few days, and low energy. I really have to push myself to do any exercises or go for a walk. I miss having a lot of energy and some muscles. I did one pushup yesterday! The good news about all this is it will all be over soon. I can have it all back. It will take a lot of work for some of it, but if I want it I have a chance.

The Blood and Bone Marrow Drive was a success, with over 50 swabs for the bone marrow registry. Cyle really pushed to get this done, and had help from Ben, Terri, Rosie and (I assume) other TEC employees. An open thank you from me to these guys for their effort and support.

Day 49, halfway

Or more than halfway, I hope. I also hope the blood and bone marrow drive had a good turnout. Speaking of hope, that last thing I wrote on hope did not inspire me, so I tried again and came up with this:

Hope is the life force that urges us on in moments of doubt and misery. When I was faced with multiple lumbar punctures and bone marrow biopsies, hope whispered in my ear, ‘This too shall pass, focus on a peaceful place.’ When I was slammed with chemotherapy and feeling like death was at the door, hope told me ‘You are fine, you’ll get through it, you have lots to live for.’ When I was in the irradiation booth, holding myself up while they blasted my entire body, hope told me ‘Only a few more minutes, you are strong, you’ll make it.’ During the days after radiation and chemo, nearly bedridden in the hospital, hope would count down the days for me, and remind me how lucky I was compared to what could be, and to keep fighting. Now hope tells me, ’You’re almost done, you will be cured, one day at a time.’ Hope has kept me warm in this chillest land, throughout the storm on this strange sea.

I like that much better, it speaks to what I know.

My son Mike came up to visit Saturday. Ellen Sheffer was coming to the area and offered him a ride, so we hung out, played some scrabble, watched a movie, and he played some ukulele for me. I had started a new drug Bactrim that morning, and wouldn't you know just as we sit to eat I get this urpy feeling. I stood and gravitated to the bathroom, telling Mike 'I started this new drug this morning, and the side effect is nausea.' He is eating his soup, but then it really hits and I go the bathroom and get nauseous. When I came out he was standing at the far end of the kitchen, as far as he could get in this little apartment. Sorry Mike.

Turns out Bactrim and I don't get along; I had the same problem Sunday and Monday, so they changed my prescription to another drug.

Cecelia and Jan Spano also came up on Saturday, and they took Dana out and about on Saturday while Mike nursed me. After Mike left with Ellen, the girls taught me how to play euchre. Good game.

Here is the really big news. Since my counts are steady and my health is good, the docs have agreed I can go to SLO from Wed. to Sun. of Thanksgiving week, won't that be nice! SO let's keep our fingers crossed that nothing changes that! Yippe ai o tay ay!

Blood and guts drive

Oh yeah, this is important if you are in SLO. You should do this if you can.

Hope is the thing

Hope by Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
_________________
I hope we don’t destroy the planet before my great-grandchildren get a chance to fix it.
I hope Obama can get us straightened out.
I hope my dog is getting walked.
I hope this mucositis goes away soon.

What is hope? Pondering this, I’ve come to some conclusions. Hope is more than optimism; it includes a reasonable expectation for a good outcome. Hope is what we have when we can only influence an outcome in a limited way, or not at all. Hope can and will change form given new information. If circumstances grow more dire, we hope for more specific outcomes – maybe we were hoping to be out of the hospital in a week, but now a setback has us just hoping that the new chemo is effective against our cancer. If all else fails, we hope for a miracle, probably a false hope.

Leading up to the recent presidential election, many of us hoped that Obama would win. Now that he has won, we expand our hope to include everything wrong in the USA, and then everything wrong in the world. He seems like a global figure, and I have always hoped that someday we would recognize that earth is the gift from God to us, and this is what we should worship, and we need someone to lead us to this conclusion. Hope springs eternal. “Yet, never in extremity, it asked a crumb of me.”

I feel very hopeful in a much broader sense than I did a month ago, hopeful for myself and for everyone else.

Just the facts, ma'am

Day 41 and chugging along. The dang mucositis persists, this filmy thing in my mouth like I drank too much milk. And the sore spots on my tongue aren't healing. I even had the dry heaves the other day, right out of the blue. I was just trying to spit out this bubbly mass from my mouth. Dana implored me to 'Make it to the toilet! The sink can't handle chunks!' Caregiver AND cheerleader! It was all air, so it didn't matter. I suppose this could be gvhd and I may have to live with it for a while.

My WBCs were at 7.4 on Saturday, and absolute neutrophil at 5.49, so the marrow is rocking. I just have to avoid any infections for another 59 days and not trigger gvhd (unless I already have). I could still use a few more red cells, a little anemic, but I think the drugs are hammering my metabolism more than anything else. I am always cold. Chills run through me non-stop; there is one running up and down my spine right now. I sit on the couch with a big faux fur cover on, and a soft hat, and I am alright.

This really all starts with Prograf or FK506, which is the immunosuppressant they give me to manage acceptance of the new marrow versus infection versus gvhd. It has many bad side effects - it damages the kidneys, causes headaches, raises your blood pressure, makes you prone to infections, burns up magnesium and potassium, causes acid reflux (as if I needed help there) and generally kicks your ass.

Here are the drugs I am on now:

Prograf, 6mg / day now

Actigall, to prevent kidney damage

Acyclovir to prevent infection

Norvasc to lower blood pressure

Diflucan to fight fungal infections

Potassium

Magnesium

Nexium for acid reflux

It's no wonder I don't feel great. But hey, it's day 41 and we're chugging along.

Dana and I went to writing class last Wed., and I suffered through three hours with the hepa mask on. This time there was another male in class, and 12 women. One assignment the teacher handed out sea shells, nice ones, and told us to write something. Every woman wrote about the shells in some way. The other guy wrote about a fishing adventure with his Dad and uncle, and I wrote about giant waves that creamed us at Point Judith. Huh.

We also had this exercise of doing alpha poems, where the first letter of each line spells something, like this:

Must be an easier way,

Using my body, making this a

Cause celebre, like some

Oversexed hotel heir with bulimia.

Still I regret ever hearing of cancer.

In no way do I deserve this, this

Treatment of my body;

I am not a

Septic system.

Which of course spells mucositis.

Feeling some pain, I push the button.

Every push brings some relief, a

Narcotic surge

Takes hold of me, just for

A little while,

Not for long,

Yet

Lucidity escapes me for days.

So you crazy blog readers, you can do better than that, let's see what you can do with this alpha poemery.

Yesterday we went to see the Papua New Guinea Sculpture Garden, right here on the Stanford campus. In '94 ten sculptors from New Guinea came to visit for six months, and created this garden. Dana stumbled upon it on a long walk. Unfortunately her camera battery was dead, but I found these pics. There is actually a rock sculpture of the Gates of Hell - I'll get a pic of that when we go back.

Historic Day

Today we select a new President, handing that person an enormous job, an enormous mess. I admit that I thought our country thrived under Clinton, when everyone had jobs and spending money, and the redistribution of wealth he created drove us to a surplus. There was a small blurb buried on page 5 in the paper the other day that the major economies of the world had constricted wealth in a smaller population, and showed we were now just ahead of Mexico and Turkey in terms of wealth distribution. 38% of US wealth held by 1% of the people. It always seemed to me that a volunteer military does better if there is a bigger pool of uneducated people with little opportunity and no money.

What is really bothering me is that Erica, a fellow journeyer through the ALL nightmare, has relapsed after her BMT failed. She has been through all the hells I have and a few more, and no she is out of options. It seems very unfair that a young, healthy woman with a great attitude and fighting spirit and massive support group should be treated this way. Someone tell me, what sort of God is this? Why her? And then I remember a post I wrote way back in March '05 where I asked that question. Why me? And the only answer is, why not me. There is a huge luck factor in getting through this.

My luck continues. My WBCs yesterday were at 5.5, normal range is 4-11. I am still low on reds and platelets, but all are rising. My kidney is under assault by Prograf (FK506), so we lowered that dose and I am drinking 3 liters/day. The mouth is still cut up a little bit so I watch what I eat.

Dana is back, over her cold, and taking good care of me. She made us walk to City Hall yesterday to vote, and it was raining, waaaaahhh. She is making pancakes and bacon right now, yummy, I will have to be careful with the bacon. I need to commit an hour a day to exercise. Right now I look like an elementary school kid drew a picture of me, a big circle and some lines. I would like to surf and golf again, even badly. Red blood cells would help and we're almost there.

My thoughts and prayers are with Erica this week, and with the poor guy that wins the election.

Get up and Boogie

My WBCs shot up yesterday to 4.3, most other numbers rising as well, so my health is good. I had to sit in the ITA for 4 hours getting magnesium and potassium. I was having serious hot flashes from the magnesium and had to ask them to turn the infusion rate down.

Beauchemin is here and pushing me off the couch. I have to remind him I am still unwell, but he is right in pushing me to do what I can. I would prefer to lie on the couch and watch videos, but we're going to end up walking around somewhere. We walked to the library and around downtown a little last night. We watched the Celtics crush Chicago last night, then watched some 'Flight of the Conchords', very funny guys. He made us some steel oatmeal for breakfast, with bananas and brown sugar, yummy.

So just a short post to say I am fine, weekend off from the ITA, and I hope Mike doesn't kill me.