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.

Relief pitcher

Well, Dana finally succumbed to the head cold she thought she was getting for the last 4 days. We called young John up from the bullpen, and he came up Tuesday night. Dana left Wed. morning for SLO after cleaning the apartment; she did not want to leave any cold germs behind. When I talked to her yesterday, she was cleaning in SLO.

John and I had a shaky start because I forgot my cell phone, and left him bad instructions to the Stanford Cancer Center. Normally I call when I am just about done; it can be 2 hours or it can be 4 hours. I used the house phone to call John, and he left to come get me, but I knew when he didn't show in 15 minutes that my directions failed him. Eventually he showed, bent but not broken.

Everything is fine with me. My WBCs are at 3.3, big jump Wed. from 2.7. All other counts are up and looking good. The doc looked in my mouth yesterday and said 'Could be a month before that heals completely.' Bummer. The sore mouth is making food choices for me, and forcing me to blend things that aren't naturally blended. I am down to 169 lbs, from 180 when I left the hospital. The 180 was a bloat; I should weigh 160-165 in fighting trim. I am nowhere near fighting trim. It's going to be a long road back.

John said to me last night 'It's like you're under house arrest,' and that's true, except I can go out. The biggest fight is with boredom. I was watching a PBS show on Brain Health, and they showed that in order to keep brain plasticity you had to learn new things. You couldn't just do crosswords or sudoku, but had to take up new skills, and force your neurons to seek out new pathways and make new connections.

So, I am searching the library for some DVDs to learn French, for the once-healed Paris trip I owe Dana. Dana wants to pick up a couple of ukuleles and learn to play, easy for her as she plays guitar, not so much for me. John and Mike both play ukulele, so that we would be entertaining as long as I don't sing. Knitting? I am always chilled because of drugs, I could make big sweaters! I should get better command of Spanish, I only have the present tense right now, and not much of it. A tenuous grasp of reality. I started on Tai Chi in Fground, seems like a lifetime ago, and I should try that some more. If any of you have recommendations of what new skill I should learn, send it on. Nothing involving heavy lifting, industrial lubricants, or live (or dead) animals please. Keep it low microbial too, and inexpensive.

Today John and I will go grocery shopping, mostly for soups. The cabinets are stocked with beans, all kinds of beans, but no soup. I won't see John for many hours; he goes to bed at like 4 am, and I get up at 7 am. Maybe around 2 we will go shopping.

Pancakes, Yumm

That's right, pancakes this morning, pretty good! I just wanted to write a short post to correct something I said last post. The doctors do not want my WBC count to steadily increase, they expect it to get to where it is and then fluctuate but with a long-term upward trend. I found this out yesterday when my WBC dropped from 2.9 to 2.7 and started asking more questions. They will only get concerned if it trends downward. I am now on every other day visits to the Cancer Center (henceforth ITA - Infusion Treatment Area), weekends off. Cool.

GOt a package in the mail from Yawkey Way, a Red Sox calendar and program, and a little packet of Fenway dirt. I tried to cut up the dirt and snort some, for power, but it is decomposed granite and doesn't cut well. Thanks to Matt and Marian for pulling this off for me, too bad we couldn't win the ALDS. Looks like the new rule is only 1 championship per year for Boston teams, and the Celtics get '08.

My great friend Mike B has agreed to be my caregiver next weekend, so Dana can go home to SLO and see Mike and John, be home, and especially to see Mikey in a couple of plays he is, 'Wind in the Willows' and 'The Lottery', an odd combo but that's high school theater. So that will be great; she needs a break.

Pancakes this morning reminded me how damaged my nose is, my sense of smell and taste are shot. I could taste the syrup but not really the pancakes. I can taste sweet and salt, but barely. Gatorade is tart. Anyway, I was thinking of this in bed last night and pondering on it, and I wanted to relate a story, but Dana says it is too graphic, or at least needs a warning, so here is your warning: the following is a graphic story of nose clearing.

In the midst of hell, about Day 11 or 12, when my lips were those big masses of black, my nose was also a mass of black. Lying in bed trying to breathe through the mucus-laden mouth or the clogged nose was difficult. I started testing opening my nostrils wider with my fingers and discovered the tunnels were clear, I just had these clots covering the openings. The nurses all had told me not to blow my nose or I might start a nosebleed, and that wouldn't be good with no platelets. But they didn't say I couldn't undergo mining operations and clear the nasal passages.

So I carefully and meticulously removed the clots covering my nasal openings, stopped the minor resultant bleeding, and all seemed well except my nose kept collapsing on itself, the way a camel's does, closing the opening. I thought of BreatheRight Nasal Strips, and took some tape and jury-rigged my nose to stay open. Much to my delight, that lasted until the next afternoon. We bought some Nasal Strips and I started clearing my nose and using those every night, guaranteeing free air passage through at least one passage. They worked great, except for distorting my nose by noon the next day. I think this helped me heal faster.

I also discovered how beautiful everyone's eyes are. We spend very little time looking deep or long at someone's eyes, they are always flitting about, and we attach too much social significance to staring into someone's eyes. When nurses are working on your IV lines, they are often right near your face, and you can study their eyes, which I sometimes did. I discovered such a variety of colors, blues, yellows, brown, greens, all mesmerizing. Dana's blue eyes are like diamonds, with sparkling gold flecks throughout, beautiful. I bet staring into her eyes is what has me mesmerized, with her melodic voice.

Inquiring minds

All these questions, sheesh. I struggle with this stuff too, but I get to ask the docs. Here is how things have happened:

On day Zero (September 30) I got the transfusion with Lisa's marrow cells. My WBCs were on the decline at that time. I was in the hospital and starting to get sick. The effects of the irradiation and the chemo had started to hit, and the old marrow was dying. WBC went to 0.1 (homeless WBCs hiding under trestles). Mucositis set in, we wrung our hands, but then on day 10 my WBC showed a tiny spark and went to 0.2. Engraftment of the new marrow had taken hold a little, and pumped out a few WBCs.

The WBCs steadily but slowly rose, slowed by the immunosuppressant FK506 so that no GVHD would start. On day 19 my WBCs showed a pretty solid jump from 0.7 to 1.3 and I took that to mean the engraftment was solid and we were out of the woods. However, the mucositis had taken its toll and my mouth and tongue and lips were ravaged. I was on TPN (total parenteral nutrition) through the IV, like a big bag of chicken broth, and that was all my liquid and food until day 20.

My mouth has mostly recovered. The last 2 days in the hospital I drank Ensure and tried to eat, but wasn't ready for solids. You had to take in 3000 ml a day before they'd let you go, but I think they cut me some slack since I was trying. The last of the black lips fell off 3 days ago, but I still have a few lacerations on my tongue and inside my cheeks.

Now, I'm slowly adding solid foods. I had cream of wheat and scrambled eggs for breakfast, with tea, gatorade, then, a tuna and non-dairy cheese sandwich for lunch with a non-dairy milk shake. I'll probably have whatever the SuperCareGiver whips up for dinner (soup?).

We are settling in to this phase. Today was typical of our new routine. We left here at 9:40 this am for my 10am appointment at the Cancer Center. I am mask-free here in the apartment, and in the car if the windows are up, and in the rooms of the Infusion Treatment Area (ITA) in the Cancer Center as it is HEPA filtered. I do have to wear the mask in the waiting room. I sat around and read the paper and got into the ITA at 10:30.

The ITA rooms hold about 6 patients in a common room, separated by curtains. You can have guests. They draw my blood tests and check me out. You sit in a recliner and have your own TV. I read. Once a week I get a chest X-Ray. Once my blood tests come back in an hour or two, they give me whatever they need to (potassium, magnesium, blood), hook my fanny pack IV up with a new load of FK506, give me new batteries, ask me for my list of everything I ate and drank, then away I go. Today was unusual because they reduced my FK506 dose to an amount they can handle with pills, so I was liberated from the fanny pack, no tubes, for now.

I call Dana's cell when I'm finished and she is there in 5 minutes. We left there today at 12:00. I put on my mask and walked out to meet her, got in the car, took off my mask, we make out, and then we went to the grocery store. I have to wear the mask in the store. I have a brand new gut, so I am off coffee for now and maybe for good. Bland diet. I shopped in the baby food aisle today but didn't buy any. We bought puddings, teas, lactose-free dairy, eggs, sorbets and Sprite. My digestive system is like a kid's, and I will coddle it along until my mouth finishes healing.

Today my WBC is 2.9. Normal is 4.0-11.0. The docs are looking for a steady slow rise in WBCs, not like last time. They do not want the WBCs to jump and decide to go attack my liver or anything else, so slow and steady she goes. My total neutrophil count yesterday was 1.84, above the minimum, meaning I am not neutropenic (immune deficient), but the rules are different for BMT patients, so the mask and dietary rules apply regardless.

Here is the latest photo, with another one I took in the depths of hell (10/12), for comparison.

Phase IV Begins

At 9:00 this morning the whole doctor team came in, all smiles and handshakes and congratulations; everyone loves a victory! Dana missed it, too bad, but she was busily cleaning and preparing the apartment for my arrival. When Dana arrived at 9:30 we had to meet with pharmacists, IV pack nurses, the nutritionist, and the charge nurse, and Dana had to pass the dressing rechange test (she aced it). We got out of the hospital at 12;30, ahead of schedule. Dana and I are now in the apartment in Palo Alto, and it is perfect. 5 minutes to the hospital, very clean and homey feeling.

So now begins phase IV, daily visits to the Cancer Center, fine tuning the immunosuppessant FK506 so that the new marrow does not go into attack mode, and treating any of the myriad other problems that could occur - liver and kidney being the scariest, but many others as well. So we await now and see if I continue to get lucky and graft versus host disease is minor. Day 90 is now the big target date. They say nobody goes home before 90 days, so that is the target to be in SLO, December 29.

My feeling is this bone marrow has settled in just fine, is working at making product, and I will get some annoying level of gvhd just to remind me not get cocky. My skin has always been my weak point, so that is my guess for minor problems.

I have to tell you that the last 21 days, especially days 6-18, was not like any of my other stays. Those were picnics, walks in the park. This was thru the gates of hell and back again, and don't I pity all those patients that can't tolerate pain and discomfort as it seems I can, nor heal as fast. I am blessed in this department.

Around Day 3 the mucositis set in. Remember the cross-country spikes from high school, with 1" spikes from the toe to the ball of the foot? Imagine a little cross-country meet in your mouth, starting on your lips and ending at your butt. I have said I was just a big sick tube, but not until this started did I really feel like it. That is when I last blogged in earnest. The way they deal with the pain of mucositis is by allowing the patient to control the flow of pain meds, pushing a button as often as every 15 minutes to deliver more fentanyl. (This part is somewhat hazy.)

This is all controlled by hooking you up to a monitor that reads out your vital signs (BP, pulse ox, temp) at the nurses station and triggers an alarm if anything goes wrong. So the tendency may be to overmedicate, and being aware of that, I didn't. But the system limits you much further - you are tethered to the IV pole, to the Pain Control Access system, and to the power to run this. You do not drink, eat or move except to pee and poop. I started getting all my action in my dreams, and in my bathroom attempts.

I was horrified to find myself crapping my pjs just reaching for something, or waking and trying to untether in time to make the bathroom. Not just once or twice, and I had asked the docs to reduce the fentanyl dose that was delivered. I would clean up as best I could, and then reasoned that it was the hospital's system that got me here, and hit the call button for help. Turns out that this was not uncommon.

More horrific than those accidents were the dreams. I would have to work my way up out of a dream to prove it weren't real. I woke up one night and yelled "I did not kill my dog!" I do not remember the dream, only that it was so real I was sure I had killed Woody, I had this awful sense of shame and hopelessness, and only by waking could I make it go away. I was shredded. I had other dreams about the Beauchemins involving lots of junk fancy cars parked throughout a big house, and another where Dana and I were trying to hug but we kept passing through each other. I was sure one of us must be dead, and had to swim up to reality to make sure we weren't.

In the midst of all this dreaming, I was actually making the motions that were going on in my dreams. My IV alarms started going off more frequent, and I had twisted IV lines. The nurses confronted me to say that I was twisting my lines on purpose, some nurses had seen me working at the lines. I was not in my best arguing form at 2 am on fentanyl, but managed to ask why I would do that? I thought maybe I was just twisting and turning in my sleep.

Dana pointed out to me that when I napped during the day that my hands were very busy, trying to do some actions. One night (around Day 12) I had a dream that Mikey had been abducted by Chinese mafia, and there was some overall sense that exceeding bad harm was coming to him. He was about 8 or 9 years old. When I finally rescued him he was in this sack, and I struggled mightily to open this sack. I awoke and found I was trying to open my blanket, a single layer of cloth.

I asked the doctor to untether me from the fentanyl and I would deal with the pain on my own. I did not hit the more fentanyl button for a couple of days, so he unhooked me. I rode it out from there with much better results. Other than the dry heaves from swallowing blood and mucus, the pain was already abating, so it worked out just fine. The dry heaves make a great abs workout, by the way.

While I was down there in hell, I could feel the support, the hands reaching down to me, trying to pull me up. I wanted to write a blog entry, but literally could not without ruining my laptop. But I knew you were all there, pulling for me, and I really thank you for all that support and caring, for helping me and my family rise up from the depths. The road is not finished, but that was a hard stretch and with all your help we are through it.

Up from the depths

Friends, family, I am back. The docs told me this am that my WBCs had reached 1.3, up from .7 the day before, and I would leave the hospital for the local apartment on Tuesday. Hooah! I would've blogged sooner, but I finally have slowed the flow of blood, mucus, and saliva so that I can write. I haven't a cup of coffee in 3 weeks, nor anything to eat, but that new bone marrow from Lisa has taken root and is pumping out WBCs.

Dana and Mike fittingly ran the Nike 1/2 marathon today and are doing well. Just a short blog for now, more gritty details to follow as I rise firther from the depths.