April 2018

Wednesday, March 17, 2010

DAR #8-#9: "'Twas a Rough Night" and Cultural Incompetency

• Tuesday, March 16, 2010 9:46 AM, PDT

DAR#8: My health seems to be proceeding as expected. The doctor says my hair should stop falling out and start growing in again in about a month (Ann heard three months, but I'm sure it was one); my eyes should improve in 3-4 months. And my energy should return to near normal in 4-6 months. (That's half a year of guiltless napping). I'm also experiencing intestinal distress most nights and trying to figure out why. Maybe cheddar cheese, chocolate (horrors!), garlic, and sugar (horrors upon horrors! Will this madness never end?) I can see you, Matt, Jane and Pea starting to type now. No, I don't need the vaseline yet, but thank you.

My follow up MRI is on April 8 and the appointment to learn about the MRI results is on Tuesday, April 13. The doctors hope to see the tumor melting, like the wicked witch of the west, to show that the radiation has been at least partially successful. If I never have another tumor, we'll know that the radiation was completely successful. I'll have MRIs every six months to see.

Last night reminded me of the only line from MacBeth that I think ever gets a laugh: "Twas a rough night." I've had a lot of rough nights since brain surgery. Not only do I now deal with intestinal distress, but I've also been much more active in--and out of--my dreams.

Last week in the middle of the night, I woke myself and Ann. I was screaming. To appreciate each scene, you should know that Ann wears a mouthguard to keep her from grinding her teeth and tape over her mouth to help her breathe through her nose. So when she pops up to see if I'm okay, she sounds like a mummy, "Mmmm mmmm mmmm mmmm." Not really especially comforting, except that it makes me laugh.

A couple of weeks ago, I dreamed that a Texas cowpoke was mocking my grief. I stood up to wallop him. I heard a mumbled scream, much like the sound of a mummy screaming. In my real life, I had thrown back the covers, drawn back my fist to punch him, and hit Ann in the gut.
Closer to returning home from brain surgery, I dreamed that I was outside and heard a russle in the bushes. When I looked closer to investigate, a vicious squirrel jumped out at me, arms wide like a bat. This was no ordinary squirrel, but a squirrel much like the rabbit in Monty Python's Holy Grail: "Run away!"  I screamed and ran. In my sleep as well as out of my bed. Again, the mummy saved me.

In yet another dream--or maybe a hallucination--I saw a man at our bedroom window. I screamed and would not be convinced he was a figment of my imagination until Ann showed me that the window I saw him in was also a figment of my imagination.

Brains are funny things. May we all sleep well tonight. Mary

Sometimes people do have experiences in life that might offer help to others in the future. In this case, I hope so. My Mom had radiation years ago & did experience guiltless napping for quite a few months afterwards. Nap away. Now, about those dreams... Are you sure that's not just a Pisces thing? Howard flails and hollers sometimes too, and his birthday is just a couple of days after yours (belated greetings by the way). We chalk it up to stress, safe to say you've had a bit. Tell Ann that she & I can talk about ways to protect ourselves later. I'm an expert with intestinal distress & suggest eliminating everything you love from your diet. Unfortunately, that will probably work. Try gluten free, or sugar free, or dairy free, or coffee free, or all of the above. You should know in about a week if your gut approves. It might even help the night terrors. Hope to see you soon, hopefully when you're awake. Karen S.

If you think there is only one line in Macbeth that gets a laugh, you didn't see our high school production. But then maybe it wasn't the lines. The knight falling off the 10 foot platform as well as armor popping open in the middle of a fight garnered a lot of laughs. And when I (Banquo) dressed in a night shirt came out of the same door that Lady Macbeth had recently come out in her night gown --- what else would red-blooded high school students think. (The staging was changed the next day). Keep pouring water on your tumor. It worked for the Wicked Witch. -John

Mary and Ann, a lullaby for both of you....
Bed is too small for my tiredness,
Give me a hill topped with trees.
Tuck a cloud up under my chin.
Lord, blow the moon out, please.
Rock me to sleep in a cradle of dreams.
Sing me a lullabye of leaves.
Tuck a cloud up under my chin.
Lord, blow the moon out, please.
Sweet dreams! Rita and Linda

Oh my what dreams. They happen to me too and it ends up it's just my husband snoring. Poor Ann. Maybe you need a night light or a stuff bear. How about a bubble bath with lavender to soothe body and mind. I'm sure I'll be dreaming of you tonight after reading your journal. Love ya both! Auntie Susan

I am amazed at your ability to scream and punch people when you are having bad dreams. I am always unable to move and my screams are pathetic moans. I also must use a nightguard, so maybe that is why I can't scream. The thought of tape over my mouth, though, is terrifying. Poor Ann, she goes to bed gagged and then gets punched and screamed at! I am sorry for your intestinal distress. This has been a frequent companion of mine as well. You have probably been tested for lactose intolerance, right? I hate to rain on your party, but I am thinking about all those milkshakes. . . OK, the truth is, I have been thinking about all those milkshakes a lot, ever since you first mentioned them. I have been thinking about them with longing. Since I am lactose intolerant and currently off sugar as well, it is possible that there is some mean-spirited part of me that really does want to rain on your party, brain tumor notwithstanding. Oh well, there are always lactose pills! Jane, until you expressed it, I hadn't realized that I too think of Spell Check as a "he". I tend to ignore him, unless he is being very funny. Then I will often add a P.S. to my email to let my recipient know about the silly changes he has suggested. They probably don't get as big a bang out of it as I do. Rebecca

At your hospital, do they let you listen to music during your MRIs? I had an MRI at one hospital, and I got to bring my own cd and everything. It was much better than my 2 MRIs at another hospital, where they just give you ear plugs. Lame. Tressa

Your Okie and Aussie friends will go after any cowpokes who taunt you in your dreams! Jay

• Wednesday, March 17, 2010 12:05 PM, PDT
DAR #9: I'll tell you a secret. I have high hopes that this radiation worked. I try not to have high hopes, because I have often not gotten what I hoped for and found the alternative was a richer (and usually better) experience anyway. But my hopes are so high that I feel like I have an overfilled balloon in my ribcage. Okay, sorry for that foray into the inappropriate. I won't let it happen again.


Several of you have expressed concern that I may not be able to drink beer on St. Patrick's day. No need for concern. I seem to do fine with alchohol. It's just food that bothers me. When I visited St. Patrick's cathedral in Dublin ages ago, I was surprised to learn two things: 1) St. Patrick's heart was buried there but his body was somewhere else. (I found dismemberment a strange way to honor him after his death--though ceratinly better than before his death and 2) for the Irish, at least back in the day, St. Patrick's day is not a drinking holiday. It is a sacred day. If I remember right, that's kind of like cinco do mayo in Mexico. I forget what day that's on. (For those of you who don't speak Spanglish or drink beer, Cinco d Mayo is translated "May 5.") I guess both are easy examples that it's often hard to understand what's going on in another culture.

In another example of cultural confusion, a few years back I went to our sister community in El Salavador with two other adults and three youth (it was a particularly difficult group of youth, so we needed one adult per youth). We arrived the day after Christmas and left the community the day after New Year's Day. The tradition there is for the women (of course) to rise very early on New Year's Eve and make a gazillion tamales. During the day, neighbors visit one another and no one cooks, but every home offers you two tamales and a cup of coffee. We didn't understand that it's polite to say no thank you or to have only one tamale. I think Clarita counted that she had 15 tamales that day.

In another, more dangerous, case of cultural confusion, Ann and I had a chat-chewing, gun-carrying, oddball of a "guard" when we visited the Greater Rift Valley in Ethiopia. When he decided to leave us early and stay in a market town we were visiting, Ann didn't pay him as much as he expected. On the long and bumpy hour ride to our, um, dwelling, from time to time he would grip his rifle and turn to stare at Ann for a good three minutes. When we arrived back at the camp, he kept coming by to stare at her in our dwelling. Finally, we asked the drunken but English-speaking manager to translate for us, and we essentially paid them to take him away.

In a third example of such cultural confusion, when I was in my early twenties (so long ago), I went with three other Americans to a small community called "Camelote" at the foot of the mountains in Michoacon, Mexico, to do some service work: dental hygiene awareness and building latrines. The last day of our six weeks there, Juan (the only one of us who was fluent and had Mexican heritage), learned that the locals thought we were really CIA spies. Why else would rich American kids (rich by Camelote standards), traipse out to the Mexican jungle to dig doo-doo holes? They had a point. This explained why the clearly corrupt "mayor" steered us to specific homes, and why one earnest young man took us on a tour of the local marijuana farms. I guess it didn't occur to them that we thought THEY were interesting, even though they clearly found us a sight to see. When we visited the tanke (swimming hole), the first day and got in to swim, the fifty or so folks in the tanke got quietly out of the water and sat on the bank to watch us, like we were polar bears or penguins.

I love these experiences where my assumptions about what's happening are challenged. I wonder how you're doing in Vietnam, Susan, aside from being challenged by the warmness of the local beer.

Happy St. Pat's! Mary

Dear Karen&Howard Sitzberger-Miller, Mary DOES eliminate every food she loves. Quickly. That is the precisely the problem. Jane

I hope you realize what an awesome sacrifice your father is making to leave Raleigh and visit you!! He is missing (with me) 3 days of golf, 3 days of bridge, and a night of poker!!!!!! I hope you appreciate this. Do you know that I spend more time with him than your mother does!! Love, Alan P.S. Jill and I have really enjoyed your blog.

"If I remember right, that's kind of like cinco do mayo in Mexico. I forget what day that's on." Hey Mary, I got the joke. Mary D.

Brain Tumor Journal Readers People Choice Awards:

(Please picture the real Penelope Cruz opening envelope and saying in Spanglish): "And the winner for Entry that Generated the Most Responses Is....Brother Matt for Vaseline!!" (picture her being visibly pumped I won)

(As I'm walking/sauntering down aisle Tom Hanks steps into aisle to give me chest bump knowing this will equate into bigger payday when he plays me in upcoming film...Scarlett Johannsen attempts to kiss me but I explain to her I'm a married man)

"First and foremost I'd like to thank the brain tumor for making all of this possible. While this may sound perverse, it has taught me a lot about my sister Mary. For instance, I never knew she was funny until he/she/it reared its ugly head. When I need a lift I often think back to the homeless man insisting on helping Mary across the street when she actually didn't need to cross the street and then Mary crossing the street back to where she started when he was out of sight. That visual had me in tears and hopefully can be included in the film. More importantly (or maybe not I don't know) the courage (grace under pressure as I recall Hemingway describing it, and that little boogar certainly put pressure on Mary's innards) and resilience Mary has displayed through all these hardships is an inspiration to me and I am sure the entire Journal Reading nation. But enough about her, back to me. I have had to endure two brain surgeries (and to show I love you both, I broke a toilet seat in honor of my Dad calling to tell me good chance Sister Jenn Jenn doesn't make it through the day), a radiation treatment, the death of my beloved lab Stella, 9/11, and a financial meltdown I instigated all in the course of a decade. Where is the justice in that Brain Tumor Journal Readers of America??!! However, remain calm, for there are brighter skies ahead as Mary so poignantly pointed out...she represented my future in a jar of Vaseline and for that I thank her (weep weep). So, this award is not an ending but merely a beginning, and I invite you all to join me on an incredible journey into the back half of life at . Thank you!! Thank you!!! Brother Matt

Mary: Acceptance speech coming up, probably Friday, when I will have more than 10 minutes to take care of your website and Facebook both. Jane

Mary et al... It's hard to follow Matt's acceptance speech but since I am writing from Hanoi (again) I hope that will over-compensate for the lack of wit! And I am writing on a computer whose spell check only works in Vietnamese so please be gentle with me (I'm talking to you, Rebecca!). Hmmm. Mary asked for cultural experiences. One pops to mind. I got very sick in Halong Bay, which is one of the most beautiful places in Vietnam (and the most expensive part of our trip because we stayed on a LOVELY boat!). I was in bed pretty much the entire time (when I wasn't throwing up...and it wasn't from sea-sickness was from food or water in Hanoi). Our guide, Son (not to be confused with Sun or Danan--neither of whom has made an appearance on this trip) was my guardian angel. He brought me rice and tea, sat beside me and told me stories of his childhood and family, wiped my face when I broke into a sweat, and even gave me a massage (as he used to do for his mother when she was sick or tired). Everytime he left my cabin I told him "thank you" profusely, as I was eternally grateful. He finally took my hand and gently told me "Don't say thank you. It creates distance between us. It implies I am doing something I wouldn't normally do". I asked him what I should say and he said I should just nod or if I really needed to speak I could add an "uh" (kind of like a grunt) to the nod. After that I grunted and nodded a lot and he smiled gratefully. Susan

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