Day 18: White Light Swirling, Living Without a Revocable Trust, and More

The day before yesterday, Brad Wetmore, former Trusted Solaris engineer, drove me to radiation. Brad is about 6' 7" so it must look funny to see the both of us stand side by side.

Former Sun Network Storage (NWS) co-worker, Tom Brodie, drove me to my radiation appointment yesterday. Both Brad and Tom can vouch that I was not as bad as I described in my emails. The difference is the morphine prescription the doctor recently wrote for me to take as needed. Hooray for morphine. I only take it once or twice a day and at half the prescribed maximum, but it helps give me a break. I also probably feel better because it's been almost 2 weeks since the last chemo round was over.

For those who haven't heard, scientific research has found that people taking morphine for pain management don't get addicted and are generally safe to drive. The ones who take morphine to feel better than normal are the ones who get addicted or addled enough to not be able to drive.

I hope the morphine helps with whatever the second round of chemo that I start on Tuesday next week will bring me in the way of symptoms.

The chemo doctor is thinking of skipping or shortening the five days of 5FU next time because of my symptoms. She'll decide on Monday when she sees me. She'll still give the day of cisplatin in any case, The rationale is that the chemo softens up the tumor to make it respond better to the radiation. Makes sense. I'm also getting the picture that the tonsil cancer has been slowly growing for years. Those slow-growing tumors are harder to zap that the fast growing ones.

The radiation doctor looked down my throat and said that the tonsil has shrunk. The swollen lymph node is still about the same in my neck.

Anne Alexander another former NWS writer, drove me a couple of weeks ago when I was wearing a 5FU chemo fanny pack, and I was just beat. The two of us were just beat, actually, on a hot Friday afternoon in rush hour traffic.

Thanks to Brad, Tom and Anne. And thanks to all of you. Even if I don't specifically mention your names, I am very grateful for all the kind acts you have done.

Sharon Bradshaw, who is one of the many people that would classify themselves as spiritual but not religious, wrote this:

As I was driving in to work, I had this vision of you and white light
swirling around and through you. This bright light is filled with love,
resolve, peace, and healing.

Nice!

My money making is limited these days to whatever State Disability will give me. I got my first check yesterday, which was a relief, since I wasn't positive I would qualify.

Today, my son and I went downtown to James Quillian's law office to investigate a living trust. He talked us out of getting one. That's a goodwill-building-thing-to-do, Liberty said. The lawyer didn't get any money from us this time, but if either of us need a lawyer in the future, we would definitely think of him.

The lawyer said that probate is not required for estates as small as mine. He told us a few things to do that will achieve what I was trying to do with the living trust. 1. Sign a joint tenancy deed without registering it. Liberty could then register it if I die. 2. Go to the bank and set up the accounts so they automatically are transferred to my son's name after death. My 401K is already assigned to my children. 3. Set up a rollover will for all other assets.

This is just in case I die for any reason.

The Letitia building where the law firm is housed was built in 1890 and restored after falling to ruins during the depression. It is an elegant relic, with 14 foot windows and lots of fine architectural features like moldings and a stunning atrium waiting room. Haven't seen much by way of elegant buildings around here, like I did in Boston when I was growing up. Everything seems better ordered in such a gracious setting. Letitia, the woman for whom the building was named, was the wife of a San Jose councilman, C.T. Ryland, who build the building, and the daughter of Peter Burnett, the first American civil governor of California.

Walking downtown was for me like a former smoker entering a bar for the first time. I used to eat out when I went downtown. "There's Bella Mia," I pointed out to Liberty, "A bunch of us piled onto the trolley and went there a few times for lunch from the TSOL group offices on No. 1st Street." The smells of food reminded me that I'm at least temporarily a reformed eater. I've lost close to 20 pounds, which is just about the only thing positive I can say about this whole experience. Oh that and the help of you all.

Day 17: See For Yourself How to Get Waffle Face, and Other Discoveries

This photo illustrates how I get waffle face at the Palo Alto Medical Foundation radiation treatment center.



This photo shows the Trusted Solaris group lunch at my place, with AJ and the women who are grilling him about his marriage intentions along with the other men who are glad the spotlight isn't being turned on them.


L to R: Jan Parcel, Hai May Chou, Ashish Joshi, Mark Wedel, Krishna Yenduri, Ric Aleshire, Thuy Fettig.

Yesterday I got the following two answers to my question about How Democrats Were Hunted:

-------- From John Stearns former coworker and manager in the Trusted Solaris group (originally from Auburn, MA) ----------

Hi Roseanne,

. . .

Regarding hunting for Democrats, I believe the story is that the Republicans in the Texas legislature tried to force an early re-districting in Texas. I believe that re-districting is only supposed to take place every ten years. Because the Texas Rs are in the majority, they are able to force a vote on it, but they need a quorum for the vote. In protest and to prevent the vote, the Ds chose not to show up. This has gone on for a while and some of the Ds left the state. The US Attorney John Ashcroft who should be spending scarce dollars on fighting terrorism, put federal agents and planes at the disposal of the Texas Rs. I may not have the story quite right but I believe that's what they were referring to.

Take care,

--John


------------------- From Jerry Johnson from Minneapolis ---------------------

Roseanne,

I'm not 100 % sure about this, but I think the "Democrat hunting" happened last year in Texas (where else?). If I remember correctly, the Republicans were using their majority in the legislature to do a little gerrymandering. To stop the process, the Democrats left town. I think the Texas Rangers were actually called out to look for them. It turned out that the Democrats had fled across the border into Oklahoma, so the Rangers didn't have jurisdiction and couldn't bring them back. Is this a great country or what?

Jerry

---------------------------------------

I met Jerry Johnson, whose very name evokes the Minnesota Scandinavian mystique, the oddest way I've met anyone. I was in Minneapolis trying to take care of things for my mother after she had a stroke, I think in 1995, and I was getting a run around by the Social Security Administration. I met Jerry on the phone at SSA,. He took care of whatever bureaucratic SNAFU was holding up my mom's monthly allowance for me. And we started to be phone friends. We only met in person once (I think) when I was visiting Minneapolis a later time. He showed me his very tastefully decorated house in South Minneapolis, with some of his nature photographs from his extensive hikes in wilderness areas around the United States framed on the walls.

As I remember he got the option of early retirement soon after, at about the age of 50, and he has been living frugally but happily unemployed since then. He has a group of friends that met at a coffee shop in St. Paul, and I'm impressed to hear that when a woman in their group got cancer, they helped her out any way they could. Her husband couldn't do it all. They even did yard work. In Minnesota, that's a big deal. In CA almost everyone has a gardener. In Minnesota, almost everyone has a big grass lawn that needs weekly mowing.

This is all very kind of them, I think.

Day 16: Marriage Evasion, Hunting Democrats, Fixing Broken Systems and Hearts

Yesterday I got a ride from Ashish Joshi (AJ), an Indian engineer I used to work with. AJ is also an actor in Indian productions in the Bay Area and a classically trained singer. I think he'd agree with my assessment that he's a non-practicing Hindu. He has taught me some interesting things about Hindu practices, including the springtime feast of Diwali, when people celebrate by spraying each other with colored water.

For years I would mercilessly tease Ashish about his marital status. I observed that most of the Indian engineers would take a month off once a year to go home and visit. Usually a bachelor would come back married. Ashish was one of only a few who didn't fit the pattern. His mother kept trying to arrange a marriage for him, but he kept evading all attempts. I used to ask him to promise to invite me to his wedding. He happily promised--since he had no plans to get married at all.

Last time I saw him, when some of the Trusted Solaris development group came to my house for lunch last month after I sprang the news, I continued to haze him.
The other women (European, Chinese, Vietnamese) at the lunch table speculated that AJ may be still unmarried because he doesn't have a chance to meet women. I said, "He's an actor and a singer, and I'm sure he is fighting the women off." He didn't disagree. He did say that his mother has finally given up. The rest of the women speculated some more about whether there was something about all of us that turned him off the idea of women in general, but he didn't reply to that loaded question either.

When he said he'd give me a ride, I said I wouldn't tease him any more. Well, this is the one more time I'll tease him.

We sat pretty quietly in the car listening to All Things Considered on NPR, and laughing together as the same things struck us funny. One was something I hadn't heard about before where some politician was accused of inappropriately using planes to search for Democrats who weren't showing up for votes.

Can someone enlighten me? I don't follow news or watch TV so I'm out of the loop. How could you go about searching for Democrats by plane? Do they have symbols on the tops of their heads, or what?

AJ commented dryly about the humor value of politics.

I feel much better today because the radiation doctor prescribed morphine. One dose last night gave me a lot of relief, and I feel renewed. I handled the tube feeding better last night, thanks to the morphine and another antinausea drug.

Vitamin E helps with the mouth and lip sores. Several people suggested it, and vitamin A. The radiation doctor agreed I could apply them topically even though they don't want me taking antioxidants during chemo.

Get this: to my shock I found out that the doctors and dietitians fully accept that patients are getting all those unnecessary chemicals (artificial sweeteners and
flavorings) in their tube feedings. One woman who is a nurse wrote me and said that her patients get the same thing. So it wasn't a mistake. It's accepted practice. My chemo doctor was not happy that I was upset. I was surprised that she found it acceptable.

The dietitian called me and assured me that the product she gave me doesn't have any artificial sweeteners. In a sarcastic tone of voice I read the names of the sweeteners off the label to her. I told her that the nestleclinicalnutrition website said that the ready to hang version has different ingredients and that I'm assuming that doesn't include flavorings and sweeteners.

She checked and called me back and said no, the formulas are the same. I meanwhile got an email answer from nestle saying the opposite, that the ready to hang version had no flavorings. Where's the truth here? She's still looking into it.

The dietitian also aid they don't use the ready to hang bags for some reason that didn't make sense to me.

But they did find me some unflavored stuff that doesn't have the offensive ingredients and they delivered it today.

Jan reminded me what I know but wish I had the patience to practice, this is not the time to fix the world's broken systems.

Today's a better day.

Except that after an exchange of hurtful emails, my daughter disowned me yesterday. Time for a lot of prayer for healing of this broken relationship.

Everyone, if I'm hard on you, please forgive me. I am trying to keep my Irish/Hungarian temper and not relapse into anger and intolerance when I'm in pain, and my biggest fear is that I will lash out and lose the support I need. I will do everything I can to not offend anyone, but if I do, please forgive me.

Remember the Lord's Prayer. In the middle it says that we only are forgiven as much as we forgive.

Day 14: Not Being Able to Talk or Eat

Not being able to communicate has manifested itself in a way I didn't expect. I haven't lost my voice. This excerpt I sent in an email just now to Ashish Joshi (verifying that he will take me to radiation tomorrow) illustrates the problem:

I left you a voice message, which you may not be able to understand.

My lips and mouth are full of sores. My spit is thick and ropey, and I cannot swallow it. Spit pools in my mouth until I pull it out. I cannot close my mouth, partly because the sores on the side stick to the sores on the gums and the sores on my top lip stick to the sores on the bottom lip. All of these things make it hard for me to form words that anyone can understand.

Some people can understand me, some can't. For example, my daughter can't. My 78 year old aunt can.

My first cousin once removed, Jodi, and her husband, John, left here at 1 p.m. Saturday to return to their home in a suburb of Chicago. Jodi's sister takes Jodi and John's children, Shawn, 7, and Audrey, 4, one week a year, and they were going to spend their parenting time off alone at Lake Tahoe. Originally, John had invited me to meet them there, but when he heard I got this cancer, John wrote me that they would cut their vacation short and come to my place and take me wherever I needed to go and to help me any other way they could between Wed. and Sat.

Here is a digression for anyone interested in how to figure out what "first cousin once removed" means. Your first cousin is a child of your parent's siblings (brother or sister). In other words your first cousin is any child of your aunt or uncle.

As this image shows, the child of your first cousin is your first cousin once removed, and that person's child is your first cousin twice removed.

Since Jodi is the daughter of my mother's sister's son, Fran, who is my first cousin, Jodi is my first cousin once removed. And Jodi's children, Shawn and Audrey, are my first cousins twice removed.

To add another data point, children of first cousins are second cousins. So my son and daughter are second cousins to Jodi and second cousins once removed to her children as shown here.



Here are Shawn, Jodi, Audrey, and Joan as they looked the last time I saw them previously four years ago. Jodi and John look practically the same, except that Jodi has a little weight and looks lovely and John has let his beer drinking add a little weight on his 6 foot plus frame and he still looks lovely.

It was a very difficult week for me. They did everything possible to try to help me. John and Jodi cooked and washed dishes. John went grocery shopping, tried to make me strange blender drinks that I requested (Chinese fish porridge among them!) because I thought I might be able to eat them as my mouth sores got worse, kept my yard watered, washed clothes. They even massaged my feet when they cramped painfully one morning (probably due to my not having eaten more thant 700 calories for a few days and not getting magnesium and calcium in sufficient quantities). It was great to have them. I was embarrassed at all the gross stuff I was going through, and the flashes of bad temper I showed under stress and pain. Since they have to do a lot of medical procedures for Jodi's multiple sclerosis, they have had to accept and learn to take many of these kinds of things in stride. It can't be easy for them, but they show a lot of courage.

It is humbling to realize what they go through on a day to day basis. Jodi put on a brave show when John carried her up the stairs. She said, "I'm just a baby." Inside the home, she uses a wheelchair and a rolling walker. Jodi is only 35 years old and John is "29," so he tells me. (She says he is eight years older than she is.) He was a computer science graduate, and she was a student at the Minneapolis College of Art and Design when they met. He got a management job. Her plans to continue sculpting had to be put aside when the MS struck.

Liberty was there unflinching for me as usual all this week at times when I couldn't face having anyone but him help me.

Monday: chemo oncology doctor and nurse; radiation. Evelyn Longo, a fellow student from the diocese's institute for leadership in ministry, drove me to both appointments. The nurse removed the 5FU chemo fanny pack I'd been wearing all week. Checked the stomach tube. Suddenly Monday I had mouth and lip sores.

When Evelyn drove over from Saratoga to take me that day in her big Jeep, I told her I'm not up to talking much, which is completely uncharacteristic of me. She said she'd be the type to not chafe under not being up to talking. In spite of her reticence, I learned a lot about her. She is full blooded Italian from Australia. But she is a pretty and trim blond mother of girls in their late teens and early twenties, and she looks and sounds British. I had a lot of mental adjustments to make looking at her and hearing her. She told me Australia had a "White Australia" policy after WWII, and recruited settlers from European countries. Whole Italian villages came for the opportunities, including her relatives from Sicily and nearby Aeolian islands. Her mom and dad met and married in Australia. They had a green grocery, and Evelyn used to relish keeping shop on Sundays for a few hours when her parents started allowing her to run the place all by herself, at around 12 years of age.

Tuesday: Liberty brought me to El Camino Hospital where the radiation gastroenterology Dr. Chin checked the feeding tube and added a stitch; at PAMF the radation doctor on call Dr. Chang told me that the mouth sores will go away until the next chemo. But he was wrong. They are continuing and getting worse. The chemo doctor's nurse said it's probably a result of the combination of the radiation with the chemo.

Lori Rubin, a training consultant I met about 3 years ago, came from Santa Cruz to pick me up at the hospital after the tube check and bring me to radiation, stop at a nearby grocery and bring me home. Lori and I don't have a lot in common politically, but ever since we first met we have a heart connection. She peppered me with questions about how I would feel having to be sociable with a lot of semi-strangers. In general, that could be daunting when I feel so badly, but not in particular, at least not that day with her. I love the way her mind works.

Wednesday:

I kept trying to eat a day and a half past when I should have given it up. Knowing John and Jodi were on the way, I started making some meatballs. Since I'm allergic to egg whites and milk, I experimented with mashed potatoes as a way to bind them, and included mashed brocolli just for fun. Now, that might sound weird but the meatballs (with chopped onions also) turned out great. But they stuck to the sores in my mouth, and the exquisite agony of trying to pry the stuck chunks off with a toothbrush cannot be (and probably should not be) adequately described.

It was great to see them. They took me to my radiation appointment and watched while Edwin, the technician, clamped the mask over my face.

Thursday

The chemo dr's nurse, Allegra, decided that IV fluids would help make me more comfortable, so J and J brought me into the chemo treatment center (CTC), where I got IVF and she checked my stomach tube, and she gave me some liquid meals to take home. After the IVF appointment, John and Jodi took me to radiation. After I got home, I drank the liquid food until Friday night, when three crates of cans of another product were delivered for me to use for tube feeding along with a pump.

Friday

John took me to Mass with my friends at St. John the Baptist church in Milpitas. I took the host and wine, thinking the wine would soften the host, but it was painful to get it all down. But well worth it. Where else can you get Bread from Heaven?

John went with me to the Morning Prayer service afterwards in a room behind the altar. Usually three or four secular members of the Augustinian Recollects attend, but Friday we also had four AR sisters there in their white habits. The sisters showed John and me where to keep up in the breviary. I have a different version with different pagination than they use, so finding my place was a challenge. Friend Efrem Castro, one of the secular ARs, volunteered to drive this week on Thursday.

Later John took me to El Camino Hospital where I had the stomach tube replaced. Before I left in the morning I called the Home Health Care (Avantacare) to find out when the nurse was coming to set me up with the tube feeding. I had only taken in about 500 calories in 24 hours and was already peckish. The person who answered the phone said a nurse would be here at 4:45.

When I got back after the tube procedure followed by the radiation appointment, I found a delivery on the front porch of cases of feeding solution, bags for dispensing it, a pump, but no IV stand. I called to find out where the nurse was, and they didn't have any appointment set up for me! I thought I only had enough energy to get through my appointments and see the nurse right away around 5, but as it turned out I didn't see a nurse until about 9. Liberty helped her improvise a hanger out of a clothes rack I use to hang clothes out of the dryer, since they had not sent the IV stand.

Another thing that is annoying me no end is that the formula the dietician recommended for me is not designed for tube feeding. I think it is unprofessional that they prescribed me a product that it contains artificial sweeteners and artificial flavors, which I refuse even when I'm healthy. Besides, I am allergic to milk, and it has casein, which is milk protein as one of the ingredients. I'm waiting until I see the chemo doctor today (Monday) to get the prescription changed to a product designed for tube feeding. I cannot believe they would send me that stuff. What does my stomach care if the stuff is vanilla flavored or sweet tasting? What are they thinking? I found two products that are for tube feeding without any of the objectional ingredients, and I'm bringing my recommendations to the doctor today. Evelyn is taking me again.

Saturday

No radiation. Getting used to the tube feeding (or not). J and J took me to a wig shop so I could try some wigs on before I start feeling any worse, in case I lose my hair. The doctor said at the cisplation dose she's giving me, my hair will probably thin but not fall out completely. Jodi and I found some styles that might look good on me, but the salesman was less than helpful and the store too crowded and confusing, so I left after trying one big blond wig with bangs that covered my eyes.

Sunday

I went to Mass at 8:30. Didn't try singing in the choir. It was the feast of Corpus Christi, and I wanted to receive communion. I asked the pastor to give me just a tiny bit of the host. He said I could receive communion by intention, but I wanted to receive communion literally. So he gave me my tiny piece (in which the entire body and blood of the Creator of the Universe resides) and I was glad. I cried during Mass and a lot during the rest of the day. Sometimes I've just got to feel my feelings, instead of letting them come out in anger and judgementalism.

Because the monthly Carmelite meeting is moved up in June because of Father's Day, I missed it. I would have loved the teachings and the fellowship. The formation director, Regina, called me later and reminded me of all the right things I have to remember about my sharing in the sufferings of Christ. Whatever way God wants it, God's will be done. When I told her my fears of it all getting even worse, she reminded me of how God gives each day the graces that are enough for that day.

As someone else's email said, "If God brings you to it, He'll see you through it." (Thanks, sorry I cannot remember who.)

I'm not adjusting well to the tube feeding. It gives me heartburn. It backs up into my throat. I can't take the volume they have prescribed for me. They want me to take in about 1500 ml. but I can't take more thatn 1000.

So my life as a cancer patient in treatment goes on. Many appointments fill my days. In my spare time, minute by minute, I have to be taking care of my mouth sores and burnt throat. I gargle with salt and baking soda solution to loosen the accumulated thick saliva and soothe the sores in my mouth and spend a lot of time getting the saliva and gargled solution out of my mouth. Every once in a while I get some relief from something called "The Stanford Mouthwash." I can swish it and even swallow it to soothe my burning esophagus. I take an occasional belt of tylenol 3 (with codeine). I have to be hooked up for 12 hours a day for feeding.

I constantly wipe my bleeding lips with vaseline to soothe them. All in all, I'm not a pretty sight.

And it's only the end of the second week. As they keep telling me, it'll get worse.

Hunkering down for the long haul.

Day 6 Corrections

John Zolnosky is a former Trusted Solaris engineer, who is from South Dakota, and so he can be counted on for accuracy in this correction:

-------- Original Message --------
Date: Mon, 7 Jun 2004 09:38:02 -0700 (PDT)
From: John Zolnowsky

My goodness, the chemo is adversely affecting you.

While Dakota Weleyan and The World's Only Corn Palace are in the same
town, the name of that town is Mitchell, South Dakota. Mandan is the
name of a town in North Dakota, just west of Bismarck.

Take care -JZ
------------------

Nancy Block pointed out that there is also a Corn Palace just off Lawrence in Sunnyvale/Santa
Clara near Central(?). When I wrote back to question this, she said:
> Yep. As Casey Stengel said, you could look it up.

I looked it up, and the Sunnyvale Corn Palace is a farm stand. See this article for info.


The Mitchell SD corn palace is a whole building decorated with murals made of colored
corn kernels. See this cool postcard.

Okay, strictly speaking, they don't have the only business called a
Corn Palace. But they do have something unique.

I understand they have a problem with the local birds eating away
the murals.

Roseanne

Day 6: About This, That, and the “Salvific Value” of Suffering

Christina Fu, an old friend from the Trusted Solaris group who now works as a security programmer at Netscape/AOL, wrote me some emails with some snippets I’m including below. What she wrote got me started to musing about suffering. I was additionally inspired on this topic by emails to and from my former-brother-in-law, Marv Miller. I started writing a long email in reaction with the thought of sending it along to this group. After about an hour and a half of writing in the wee hours during one of my first nights of insomnia after starting the chemo, I hit the wrong key and sent the write-up to the big bit bucket in the sky. That in itself was enough suffering for that morning.

Then the cumulative effect of the chemo and the radiation started getting to me and I couldn’t stand writing or doing very much of anything for a while. It’s Sunday and I’ve had two days off radiation, (and even though I’m still tethered to a 5FU chemo drip) I’m feeling a little more human. Can’t keep an old writer away from the keyboard for long.

So, I’m back, at least temporarily. Here I go again with a meditation on suffering merged in with my usual digressions.

Let me back up to Christina’s reaction to my getting a feeding tube on May 24.

Thu, 27 May 2004 Christina wrote:

> Roseanne, I have been wondering if you can eat without problem with the tube in place. Is it painful
> in day to day life? I just hope it's not too painful or uncomfortable for you.

I wrote her back that I can eat and that the tube itself didn’t hurt. “It's just hanging there from my stomach, which isn't the most esthetically pleasing thing to see . . . “

Fri, 28 May 2004 Christina wrote:

> I nearly fainted at the sight of these words...
>> It's just hanging there from my stomach, which isn't the most
> ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^ ^^^^^^^^^^^^^

And then on Wed, 3 June, she wrote:

> Dear Roseanne,
> I just read your report on "2nd day." I cannot bear to imagine the suffering you are going through.

My reply was:

I'm not suffering too badly yet. I'm a little sick to my stomach. My throat is burning a bit. I have these stupid tubes hanging from me and a fanny pack I have to wear 24 hours a day to pump a chemo drug called 5FU until next Monday.

I have a total of 39 radiation sessions scheduled for the next two months M to F. Every 21 days I start a chemo schedule, with a day of chemo and IV fluids at the treatment center. And the end of that day they hook me up with the fanny pack (which I'm wearing now) that has another kind of chemo drug to be dispensed over 5 days.

Days 2, 3, and 4 of the 21 day cycle I will spend getting 3 1/2 hours of IV fluids like I did yesterday and today. Every weekday ends with a trip to the radiation center. On day 7 of the chemo cycle they unhook me from the fanny pack. So I don't have chemo again after next Monday for another two weeks.

It is a full time project titled: "Getting Roseanne healed of tonsil cancer." The scheduling is taking almost every hour of every day. Good way to keep up my project management skills. I've got a pretty good road crew.

Ever since I got my notice from Sun in November, I’ve been tutoring Christina’s daughter, Carolyn, in Social Science, at my dining room table. One Saturday, we substituted a crash review of her biology coursework to prepare for a quiz, and during the summer, I planned to teach her writing, using Strunk and White’s Elements of Style. The way I feel now, I don’t think I can continue, even with the email classes we had discussed trying to have instead of weekly one on ones at my place. Carolyn is 10, and I get a big kick out of her. So I want to share this little story Christina told me about Carolyn:

> I had a good laugh at your "Grand Canyon" experience. Does laughing still bother you? I need to know so I can be careful to try to be as dull as possible ;-)....If laughing still bothers you, skip to the next paragraph...if not...I have to share this with you...the other day, I found Carolyn lying in bed in the middle of a day so I asked her to get up and do something. She replied, "I'd like to rest in peace." I laughed and explained to her when "rest in peace" is used and what it means.

Marv is my ex-brother-in-law. I used to be married to his brother, Lee, known to most of his friends as George, who died sadly at his own hand about 9 years after our divorce. Marv is head of the religion department at Dakota Wesleyan University, in Mandan, South Dakota, the town which is also the location of the The World's Only Corn Palace.

Marv wrote me an email when he heard from my daughter, formerly known as Sunshine, of my cancer diagnosis and then another one when he heard the good news that the cancer had not spread:

>Hi Roseanne
>I heard the news from Sunshine that your cancer had not spread, and I'm glad for that bit of hopefulness.
. . .
> When you sent me the first email I immediately thought of the
> title of Rabbi Kushner's book, When Bad Things Happen to Good
> People (that's you!). He says he was left unsatisfied with all
> the standard answers people gave him for his teen son's progeria,
> and could only conclude that God does not prevent bad things, but
> will be there to go through them with people. I don't know if
> that's the whole truth, but it seems a good place to start.
> You're in my prayers. Hang in there. Marv

I wrote back to him.

Sent: Saturday, May 29, 2004

. . .

Have you ever heard the Catholic theology of suffering? The current Pope has preached on it a lot since he has lost his health, his handsomeness, and his strength. (Note: Here is the Pope's letter on the "Christian meaning of human suffering from the Vatican web site: http://tinyurl.com/3acxq.) It's got to gall a proud talented man like him to be drooling in public and not being able to hold up his head. Although, it's amazing how much stronger he seems to be lately. I "blame" it on all the people who are praying for him.

The teaching is that when we suffer, we make up what is lacking in the sufferings of Christ. St. Paul tells us (Col 1:24): "Now I rejoice in my sufferings for your sake, and in my flesh I complete what is lacking in Christ's afflictions for the sake of his body, that is, the church,"

The best living illustration I ever saw about this topic came about when I met a young woman, Josie Gomez, barely 30, at a long term care hospital in MA where I was having scoliosis surgery (surgery to try to fix the curves that had developed in my spine when I was 11) and a long convalescence when I was 15. Josie had arthritis so bad she couldn't walk or feed herself any more. She was in that hospital for good. She was puffy from steroids. Her fingers were twisted.

From a photo she had of her and her husband, I knew she had been beautiful. Before she came to the Lakeville hospital where I was, her doctors had given her the then-experimental steroids to help the arthritis, and then had stopped very large dosages without tapering off. As a result, her hips had locked.

The nurses had to put her in a hoist to get her into a wheelchair every morning. Forty of us women and girls lived in a long ward in what had formerly been a tuberculosis sanitarium. Those of us who were able to get out of bed would gather and play board and card games in the sun room together. The teenagers who had scoliosis surgery would lie flat on gurneys and wheel themselves around. Josie sat in her wheelchair and laughed at the antics of us teenagers. She was always pleasant.

Her husband had left her, and her two little children were being raised by her old Italian mother. I asked her in the frank way that kids have how she could stand what had happened to her. She said that a priest had counseled her to offer all of her sufferings up to God. She was a great inspiration to me, and I think that saintly woman's prayers helped me to return to faith as I got older.

Not that I was willing then to accept that I was going to have to accept anything or to settle for being anything less than perfect. But I’ll have to get into my life as a tissue of denial at some other time.

We can offer sufferings as penance for our own sins, and also for the benefit of others, the Church and the world. Another relevant use of suffering is purification. Purgatory is the process of burning away all that is not holy in our souls so we can stand God's holiness. Some of us get to start the process while we are still alive.

When everything else is taken away from us we get the opportunity to fasten our hearts on God. I'm doing a lot of clinging to the rock these days. I woke up this morning and started singing the old hymn "How Can I Keep From SInging," which includes that phrase: "while to that rock I'm clinging."

I woke up at 3 another morning after the diagnosis and went into Dante's Purgatorio to refresh myself on the purifications required of souls who share my favorite sins. Dante had the brilliance to show the souls as eager to endure their cleansing because they are eager for union with God. I am getting a strong sense that the pain of purgatory could be the pain of the sin stains being burned away in the presence of God's perfect holiness. In the economy of salvation, all earthly trials, including death and labor pains, are a consequence of sin. See the story of Adam and Eve.

To endure something like this we have to be convinced that God is permitting it (not inflicting it), and to trust always that we are in God's hands and He won't give us anything to endure that He won't be there to guide us through. Which, I see, Is close to what you are saying.

Love from your sister in Christ. Roseanne

Marv wrote me back:

Subject: RE: you've got mail

Hi Roseanne

Thanks for sharing the theology of suffering. I didn't know the Catholic approach to suffering, but I have always been impressed with the references in Paul & I Peter to the idea of sharing Christ's suffering. I think Protestants tend to like Paul for a lot of ideas, but this one we generally ignore. But the idea of sharing in Christ's suffering adds a lot to one's relationship with Christ! There are some ways in which we can be like Christ.

You are in my prayers. Hang in there. Marv

Some time before he wrote me back, I also forwarded the following poem to him.

Subject: W. H. Auden's poem on suffering
Date: Sat, 29 May 2004

I found this poem 3 years ago when I was writing something about the fall of Icarus. Cleaning out my mailbox today, I realize more strongly that this poem also has something important to say about suffering.

Musee des Beaux Arts

About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully
along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer's horse
Scratches its innocent behind on a tree.

In Breughel's Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water, and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.

Day 3: June 3

The first night after the first chemo I was wide awake most of the night,
feeling queasy, etc. I picked up one of the books, Love, Medicine, &
Miracles, which Nancy Block sent me, and I found
a lot in it to be helpful. The author, Berni Siegel, an M.D. who counsels
people to supposedly help them understand what they are wanting
to get out of their sickness, really of lost me at the point when he revealed
he was speaking with the voice of his avatar, George.

Anyways, the part that was helpful was to realize that nausea isn't
mandatory. I put off taking the steroid-based nausea suppressant
drug they had sent home with me, and made it through with one Compazine.
And the whole next day I didn't use an anti-nausea drug either, until
I took a Compazine at 7. I'm leery about taking steroids. If I can avoid taking
a drug that suppresses my immune system to control nausea, when I have
anyother way to deal with it, I want to skip the steroid drug.

I noticed one book they have at the CTC (chemo treatment center) yesterday
and had to laugh. It is called, "Having a No Hair Day."

I'm going to get some ginger tea, which is great for settling your stomach.
Actually I can grate some ginger into some hot water, without having
to go to the store.

Day 2 June 2, 2004

Second day of radiation, first day of chemo.

Contrasting cards were waiting in my mail yesterday. One was from the Faith, Hope, and Love card company, sent to me by my sister, Mart. It expresses
perfectly some things I hold true, "God holds infinity in His hand and the answer to every prayer in His heart. Trusting in His love to see you safely through this time of special need." And it had this quote from, Psalms 124.8: "Our help is in the name of the Lord, who made heaven and earth." Amen.

The second card is a Georgia O'Keefe postcard of "Cottonwood Tree in Spring," which is a painting of the explosive energy of spring's rebirth, a painting I've never seen before. The card accompanied some books about beating illness, from a supportive, secular, and sometimes profane former co-worker who makes art glass and who lives in Oregon. Her postcard says, "I hope these books will help you to defeat the ba$tard. Stand fast. Thinking good thoughts for you. Nancy."

I don't resent my cancer, so I haven't begun to call it any derogatory names. At least not yet. (The former champion of "free speech" still lurks in my
personality, ready to break out under stress with a stream of sailor language.)

The cancer is just a little cell of mine that was minding its own business and then one day started to divide without malice or motive. It's just unfortunate that the uncontrolled division of that cell is something that can cause me a lot of pain and possibly death.

Today Annette drove me to the chemo treatment center in Sunnyvale in her
silver
Mustang convertible. I spent from 10:30 to 5 getting IV fluids and
chemotherapy with one drug called
cisplatin.

Annette was perfect company. The day was low key. I discovered that my
nurse
is named Annick, and she's French, from Cannes. Typically for me I kept
practicing my French
on her phrase by phrase as she came in and out off and on all day. After
a couple of hours, she said she was impressed by my accent.

Around two, Annette went out to aptly named La Boulangerie and brought
back
sandwiches. Changes to my taste buds meant that the swirling
pumpernickel/light rye
bread tasted metallic. At other times, we snacked on oranges and
almonds. We tried
watching "Legally Blonde II" on my PowerBook, but the sound
was too low without headphones or external speakers. The nurse moved us
into a
small room with a TV/VCR, and when we asked for what we thought was a
video of the
natural beauty of the Grand Canyon, we found ourselves watching
"Grand Canyon" a recent R rated movie about a guy whose
car breaks down in a ghetto and what happened to him then. I couldn't
handle
the fear, when he was surrounded by a gang playing with his head,
so we gave that up too.

To my surprise, I was able to eat , albeit half of my usual amount
of lunch and dinner. Dare I tempt things by saying there is
no nausea yet?

Before I left for the radiation appointment at the end of the day, I was
trained by a
home care organization's nurse, a Chinese woman, and hooked up with a
fanny pack for 5 days of another chemo drug, 5FU. The treatment center
also gave me steroidal and another type of anti-nausea medication.

Annette commented that she would have been screaming from not being able

to understand the Chinese nurse from the home care agency. I understand
most
accents pretty well. A lot of my coworkers here in CA have been Chinese,
as is
one of my best friends. "Imagine," I said, "the communication breakdown
if
that nurse would be trying to talk to say a patient from Mexico." Mind
boggling.

Communication in this part of the world is severely hampered by the
language
barrier between people who speak English predominantly and people who
come here and speak
mostly to others who share a common tongue and who also much less
frequently attempt to be speaking English to the rest of us.

I told Annette about the Vietnamese choir director at my church who has
been here maybe
five years and whose English is quirky, I think because he usually only
speaks to other Vietnamese. I told him I had cancer three weeks ago and
was offended by what seemed to be his cold reaction. Then at last
Friday's rehearsal, he all of a sudden understood, and became very
friendly
and talkative. Then from what he said, I was even more offended.

"Will you leave me your house?" he said. He had been to my house (and
loved it) because I tried tutoring him so he could pass a class in
English as a second language.
I had given up tutoring him because he wouldn't allow me to teach him
how to
write but instead he tried to start dropping off his essays so I would
rewrite them for him. I refused
on principle to help him get a grade he didn't deserve.
>From then on, he had treated me more and more rudely.

Last Friday, as I stood speechless about his comment about the house,
he continued, "How much could you sell it for?" I tried to explain,
"There is no equity
in the house. I bought it only three years ago and refinanced it three
times.
If I sold it today, even though it's appreciated, I would owe the bank
or
the real estate agent at least $2,000, last time I figured it out." He
obviously
did not understand what I was saying. He then proceeded to launch into a
series of partly comprehensible stories of relatives who died of cancer.

I showed him the name of a hymn I love, which was sung at the
Healing Mass I attended last week, the first time I ever heard it at a
Catholic
Church. It was popularized in the 60s by a folk music group. The song
is called, "How can I keep from singing?" by Robert Lowry.

The song had been identified as a Shaker song, but a search of the
Internet
revealed that it was written by a Baptist preacher and included in a
collection of his hymns
in the songbook Bright Jewels for the Sunday School (New York, 1869).
One day after I heard the hymn last week after years, I wake up and
start singing
it. I want to try to play it on Liberty's music keyboard, so I asked the
choir
director to find me the music.

Sunday, the choir director was nice enough to bring me a copy of the
music he'd located for the hymn
and practice it with me briefly. He said, happily, "I'll play this at
your funeral."

It's not just language that is involved in this annoying set of
interchanges,
it is conflicting cultural expectations. But that's a whole other story.

For the radiation appointment after all that chemo related
stuff was done, we got to the Palo Alto Medical Foundation at 5:30 and
had
to wait about 20 minutes. The receptionist wasn't at the desk when we
walked by, but as we walked to the radiation waiting area, he popped his

head around the corner. As I said to Annette, "He's got more highlights
in his hair
than I do." I said, "You weren't at the desk when we went by." He said,

"That's all right. We've already something-ed the after 5 appointments."
"What's that mean?" I said. "That means you're already checked in."
"Good, thanks." I cannot remember the word I rendered as "something-ed"
but it was an unusual word that slipped right off
his tongue and made no sense to me. And this is from a native speaker
of English. His lapse was more of a jargon-related misuse of the
mother tongue.

They say they are usually very punctual, but for some reason so many
people at this time need the capabilities of the A machine, which I get
treated on,
that the technician is squeezing patients in before the start and after
the end of
his work day to accommodate them all. And so the time pressure is
wreaking havoc with
their punctuality. Fortunately, the waiting room is an extraordinariy
nice place to,
well, wait.

Through sliding glass doors is a garden courtyard, its walls painted
pale ochre,
with green trimmed concrete paving. Fountains are
playing, and since its only access is through the radiation treatment
waiting room, it is a private peaceful space.

The radiation (XRT) technician, Edwin, said today's session went a lot
better. For one
example, I didn't have waffle face when I was done, like I had
yesterday.

Let me explain waffle face, for the uninitiated.
In the first radiation setup session, they molded a mask for me to wear

to keep my head precisely positioned for the radiation. Edwin
has repeated proudly a few times that he is able to direct the radiation
to within a very
small margin (1/16") not like the old days with the cobalt treatment
with
radiation all over the place. The mask is a openwork contraption made
up of (I think)
plastic strips, and when they tighten it down, if you haven't wiggled
into
it exactly right, t can leave your face temporarily looking like a
waffle.

The new machines look like CT scanners. The difference is that to set me
up
for the XRT, they position the back of my head and neck in a molded
form, line me up with some thin green lines of laser light, put in a
mouthguard, and
then tighten the mask down. I thought back
to yesterday to realize that Liberty and Edwin were both diplomatic in
not
mentioning my waffle imprint. I was in my post-radiation introspective
state, and even if I did look in a mirror, I probably wouldn't have
noticed.

The chemo drug didn't affect me, yet. The radiation causes me
to get very introverted. I feel that my body is marshaling all of
its resources. The white blood cells are signaling to each other,
"Hey, fellas, there are multiple burn sit'es in the throat area,
Let's go do some damage control. STAT. Send in the water
delivery helicopters and the guys on the ground with their
foam fire suppressants." All non-essential activities are shut down.

But somehow I can still sit and write when I come home.

Now to close with my favorite hymn of this period of my
life.

How Can I Keep From Singing

(Robert Lowry)

My life goes on in endless song
Above Earth's lamentation
I hear the real though far-off hymn
That hails a new creation

Above the tumult and the strife
I hear its music ringing
It sounds an echo in my soul
How can I keep from singing

What though the tempest loudly roars
I hear the truth it liveth
What though the darkness 'round me close
Songs in the night it giveth

No storm can shake my inmost calm
While to that rock I'm clinging
Since love is Lord of heaven and earth
How can I keep from singing

When tyrants tremble sick with fear
And hear their death knell ringing
When friends rejoice both far and near
How can I keep from singing

My life goes on in endless song
Above earth's lamentation
I hear the real though far-off hymn
That hails a new creation

Lord how can I keep from singing
Oh how can I keep from singing
(Thank you Lord)
(Thank you Lord)


=============================================================

I'm getting a lot of comfort "clinging to the Rock." If we
realize how often the image of God and Christ as our Rock, our shelter,
our
bulwark, is evoked in the Old and New Testament, we can see the fact
that Jesus gave Simon the name which means Rock is
intensely significant. His Church is built "upon this Rock."

Researchers found that in that era, the name Peter had not been used
until Jesus gave that name to Simon.

So I cling to the Rock that is Christ in His Church built upon Petra,
the man formerly known as Simon who became the first Pope.

Here is one more thing I talked with Annette about today as she
drove me home along El Camino Real. I said that us Christians as part of

His Church are Christ on this earth. We are members of His body. We do
His work. He left us with the admonition that whatever we do to the
least of His people, we do to him.

And then I remembered the story about the little boy who was
afraid to go to bed. His religious parents told him he shouldn't be
afraid
because Jesus was with him. He said, "But I want someone with skin on."

So my point to dear Annette was that today she was the major
manifestation for
me of Jesus with skin on. And many of you are being the same for me in
various
other ways, Jesus with skin on. I hope to return all the favors,
similarly. I owe you!

June 1 Day 1 Blog

Yesterday (June 1) was my first day of radiation therapy. I am
continuously grateful for how many people are praying for me. The
variety of people is astounding. I want to tell you about today's two
extreme examples, a retired priest with a thick Irish brogue and a very
nice black man who begs at the 101 North freeway entrance on Oakland Road.

Around 2:30, as I was getting ready to go meet my son at CISCO and ride
with him to Palo Alto
Medical Foundation for my first radiation appointment, I got a call
from a retired Irish priest from the archdiocese of San Francisco. I had interviewed
Father Gerry O'Rourke a few times in February for an article I wrote
about a Sacred Space Exhibit in the Presidio, since he was the Catholic
representative for Interfaith dialogue and had been one of the
consultants for the exhibit. He had called me and left a message last
week to say hi.
So I told him via email and a phone message what was going on with me.
Yesterday's call was the first time we'd talked since I left him the message.

First he advised me to receive the Sacrament of the Sick (formerly
called Extreme Unction). I told him I'd already done that when a friend
had brought me to St. Nicholas Church in Palo Alto for a healing
service last Wednesday. He said, "Good," and then, "Do you want to do
a process about this?"
Right on the phone, he led me through a series of exercises that
included asking my body to forgive me for whatever I might have done to
bring this on. Even if I was totally innocent, he said, we don't give
our bodies credit for how much our bodies do for us. "And when your body
forgives you, as it always does," then he told me that I had to be open
to whatever the doctor's are going to do to try to fix this thing. I
told him that made sense. It reminded me of the "discovery" in the
LaMaze writings I read
in the 60s that women who breathed into the pain of childbirth had less
pain. "That's right,"
he said. He ended with asking me to lay my hand on the area that was
giving me the most
trouble, and led me in a prayer to the Trinity, first the Father, and
the Son, and the Holy Spirit.

On the way onto 101, I saw a man I used to see almost every morning at the
freeway entrance on my way to work. I had given him two bucks each time
I saw him, because
I'd been given that as a penance one time after confession. And I keep
it up for selfish
reasons: The Bible says that almsgiving covers a multitude of sins.

I think the neighborhood homeless guys work out among themselves who gets
to beg on that median which hours of the day. Each of them seems to have
a shift. I don't envy
them, standing on the median on busy Oakland Road with the smell of
truck
exhaust and the broiling hot midday San Jose sunshine baking them. And I don't
envy where they sleep. There are a couple of seedy motels on Oakland Road,
one called the White Way Motel and the other the Ooh La Lodge, and maybe
some of them stay at one of them. But most likely they sleep under the
Coyote Creek overpass
near the golf course. I took a long hike one day up Oakland Road and
when I
walked down to the creek, I saw the kind of litter that indicates a
homeless encampment.

One day in November, I saw him, gave him his two bucks, and I told him,
"I just got laid off." He looked genuinely concerned. Then I didn't see him
for four months, because the times I would be driving were not on his shift.
About three weeks ago, I happened to see him, and he got very excited.
It felt
like a reunion between old friends.

Then yesterday, as I took out his money from my wallet, I said,
"Remember I told you I got
laid off?" He said, "Yes." I said, "Now I've got cancer. How about that? First
I lose my job and then my health." He said, "Oh no," and he clutched my
arm in sympathy where I rested it in the rolled-down window. He looked
closely at me.
His face was all concern. He said, "This ruins my day."
His eyes are cloudy (from cataracts maybe?) and
they were filled with tears! I said, "I'm sorry."
The light changed; I said, "I have to catch this light," and I drove
away. He
said, "I'll pray for you dear." I'm always affectionately
calling people honey, and I said, "Thanks, honey. God bless you."

Many people reading this will think me a kook perhaps, thinking I have a
friendship with a beggar, and exchanging endearments. I don't know
what to say in my defense. You're probably right. But I was very, very
affected by that man's offer to pray for me.

After the radiation session, the top of my mouth felt like it does if I eat
something too hot. You know how the skin on the top of your
mouth loosens when you burn it and then quickly
heals? Sort of like that. This morning when I woke up my taste
buds seemed to be affected.

Today I go to the chemo treatment center in Sunnyvale
for five hours of IV fluids and chemotherapy with one
drug called cisplatin. Before I go to the radiation appointment
at the end of the day, I will be hooked up with a fanny pack
for 5 days of another chemo drug, 5FU. My dear, motherly, patient
friend Annette is going to sit with me the whole time.

Another little story: while waiting for a chemo teaching session
with the oncology nurse yesterday morning, I saw a little woman
with her bald head covered with a little hat come to the desk
and find out that even though she had been called by one
of those automatic phone notification programs to come in that
day, her appointment was written down for the next day. She
sounded like maybe she was retarded, because she whined
as she talked. I talked to her after she sat down while they
waited to see if they could squeeze her in. I think now that she
was simply overwhelmed, deeply fatigued, discouraged, and
in pain.

She said, "I cannot come back tomorrow. I don't have anyone
to drive me. I have to drive myself. It is too hard." I am very sorry
for her, and sad at the difference between our situations.
I have an immense number of resources at my
disposal compared to her. It is very hard for those
who have no one.

Thanks to you all, I have many "ones." Let's all try to remember
the ones who have no one .