Monday, June 14, 2004

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.


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.


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.


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.


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.


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.
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