April 2018

Sunday, March 14, 2010

Radiation Blogs Part One

Welcome! I'm glad you're here and so far I'm open to the possibility that I'm glad to meet you. I hope you are open to the possibility that you're glad to meet me, too. Background: When I was diagnosed with a second brain tumor, I began a blog on CaringBridge in order to update friends and family on my progress. Writing the blog was more amusing than I expected, so I'm continuing to blog after radiation is complete. Below are my entries and some guestbook entries from my original blog in order to bring you up to date. Part Two will be tomorrow. After that, new entries for all of us. Mary

• Monday, December 21, 2009 2:45 PM, PST

We saw the chief of neurosurgery at the hospital today. He is not recommending surgery at this time because the tumor is so small that he is concerned he would not find it and because it's on the opposite side of the 4th ventricle from the first tumor and he's afraid to cause new damage on the other side of my brain. He is recommending radiation at this time, perhaps followed by neurosurgery if necessary. We feel encouraged by this. Though radiation will not be fun, it will at least be a new kind of misery. Love to all. Mary

Will the radiation be another chapter in your memoir, or will be a whole separate book? Bernard

M&A We think about you often. Our thoughts and prayers are with you always. Mainly, I think about how you both make me laugh. I look forward to another fine dinner with you both and the short, feisty New Yorker. Declan & Laura.

On this soltice I share light and love with you both...hello to the big apple and the yellow rose. Ellen

January 2010: Before Radiation (BR)

I had a lumbar puncture today to make sure that I don’t have any tumors traveling down my spine. A very nice nurse took me into a small room and started taking out a lot of needles. She told me not to worry about it. I stopped looking. Other than thinking about what the doctor was doing with all those needles, I found the process painless. Afterwards I developed a terrible headache, but Vicadin is now my friend and I feel fine. Test showed that I have no tumor cells in my spine. Very good news.

Before starting radiation, Yuri created a mask for my face and shoulders that will keep me still during radiation. Apparently, moving around is a really bad idea when a machine is shooting radiation at my brain. The mask is a heavy mesh. I think of it is my Spiderman mask. In fact, Yuri says I can take it home after I finish radiation and dress up like Spiderman in my own home. Halloween’s going to be great.

Go Mary!!!!!!!!!!!!!!!!!!!!!!!!!!! Sayre

• Monday, February 1, 2010 4:53 PM, PST
Welcome back. I was updating the journal under "My Story", so you haven't gotten notices about updates. Fortunately, our friend Pea knows about the innernets, so she told me what to do. So here's the summary: I'm on Day 4 of Radiation, week 3 of the swine flu and day 1 (diagnosed) of pneumonia. No time for locusts, yet. I feel pretty crummy, but it's hard to know if the misery is due to brain, lungs, or pigs. My hair is now very short. Thanks for checking in. Mary

You are hilarious! How wonderful to know you are able to keep your sense of humor underneath the pile of trials that is certainly doing its best to keep you down. And - ugh! Swine flu topped by pneumonia?? You are certainly doing it up right. So so sorry you feel so crummy. Quite understandable, but damnable nonetheless. I'm sending anti-pig thoughts and healing prayers! ;o) Love, Angelique

OK Mary! Stop the madness. That's enough diagnoses!! I thought I was impressed by my other friend who had dengue fever and malaria at the same time, but you definitely win the prize! Pneumonia, swine flu plus a brain tumor takes the cake. I bet you could get in the Guinness book of records. I'll set Owen on that. Sayre

I feel so bad for you. I can't even imagine what you are going thru. Bless your heart. Love, Auntie Susan

Ms. E.,
We know you will stay strong and positive through your radiation treatment because you are such a strong person. All of us here at Global Connections High School are thinking about you and wishing you the best.
With love from your Connections Class,
Richelle, Yessica, Roger, Jose, Genesis, Alina, Victoria, Stephanie, Masud, Lacey, and Leslie

It`s been a long time. I don`t work for Sister Parish anymore, but still keep you and Ann in my thoughts. You are a great couple and I`m sure God will give you the strength you need to go through this difficult time. Much love, Alejandro

• Tuesday, February 2, 2010 7:16 PM, PST
Today's math problem: Mary has completed five days of radiation. She has 23 days to go. What percentage has she completed? Doing okay. Taking meds now for the pneumonia. I feel like Nurse Jackie, except I can't sniff anything because I'm too congested. Mary

I'm glad Ann is there to do the math problems for you! In my prayers I am visioning pigs running for cover, lungs full of fresh air and NOTHING else, and a teeny, tiny little tumor that is melting away day by day.
I can NOT wait until you are ready to drink beer again! Susan G.

Does the radiation kill swine flu germs? Umm...that would probably be too convenient. I hope you narrow it down to one ailment soon. You are in our thoughts and prayers. Love, John Z.

• Wednesday, February 3, 2010 2:51 PM, PST
Day 6. Check. Feeling better with pneumonia meds. Here's my day: Sleep until 9:30. Eat breakfast. Sleep until 12:30. Take shower and eat lunch. Go to hospital for radiation from 1:30-2:30. Sleep until 6:30. Eat dinner. Watch “Modern Family” on T.V. (mindless and no hint of brain tumors for anyone on the show). Sleep by 8. I’m a regular party. Thanks for checking in! Mary

You always were one to look for any excuse for a nap but this takes it a bit to the extreme. I'm glad you are getting some wholesome TV in there while you are actually awake. Sweet dreams! Susan R.

Aside from the radiation bit, your brother would love to have your sleep schedule!!! Hang in there!!! weWare all sending well wishes and lots of love!!! xoxo Kristin

.217% - Bailey is working on fractions now, so I'm all over this! Unless I'm wrongHugs, Diana

Short hair is hot. Love, Forrest

• Thursday, February 4, 2010 9:47 AM, PST
Day 7: Finished 25% of my radiation, which sounds great until I think that means 75% to go. Still not over the piggy flu and pneumonia, but getting better. So here's how radiation goes: my alarm wakes me from my morning nap at 12:30 and I eat, take a Vicadin (to suppress my cough and arm pain during treatment) and shower. A nice person picks me up at 1:30 and we head to the hospital. When I walk in the radiology/oncology division, the three receptionists holler out, “Hello, Mary!” and one says, “I got you”. It's kind of like Cheers in that everybody knows my name but not like Cheers in that no one offers me a beer. A technician escorts me to a back room, where four computers are lined up. One has a picture of my face, my brain, and my birth date (not a picture, just the numbers.) I say my name and birth date (March 13, 1964--I'll be looking for your card) and they nod and tell me to go on back. I head into a spare white room with a counter, a palate seemingly suspended in the air, a circle on the floor and a gadget hanging from the ceiling. I take off my sweatshirt with a collar and glasses and lie down face up on the pallet. Two technicians pull my Spiderman mask over my head and tighten it down with clamps. It's so tight that I cannot move my lips or open my eyes. The technicians leave and there are about seven series of lights and beeps and mechanical noises. I see blue, white and red lights. Apparently, only the white and red lights are real. This takes about 20 minutes. The technicians release me; I cough and move my shoulder; we all say see you tomorrow.

So the radiation room is sort of like “Cheers,” except no beer? What a rip off!! Demand beer, at least after it's over for the day. Seriously, how do you breathe with the Spiderman mask on?
(I guess I don't know how Spiderman breathes, either.) Jane

Horace Mann, Gregory Michie, Jonathan Kozol, John Dewey, Mary E., Ann Joyce. My heroes lately. Be well! Tom P.

• Friday, February 5, 2010 6:32 PM, PST
Day 8 reminds me of a Southern Expression: "I feel like I've been dragged, kicked and farted on by my mule." Okay, I just made up the expression and, having had a cocker spaniel instead of a mule, took my inspiration from the Southern novelist Ferrol Sams, so since he Southern and I am Southern, the expression is Southern.

My roots put me in mind of that "Hee Haw" classic. I'm sure you know it:
Doom, despair and agony
Oh me.
Deep dark depression
Excessive misery.
If it weren't for bad luck
I'd have no luck at all.
Doom, Despair and Agony
Oh me....

Now that I read the words without the tune, they're a bit of a downer. You have to imagine the banjos, hound dogs, jug whiskey, Grandpaw and Minnie Pearl with her price tag on her hat (Gangsta Minnie Pearl was before her time). Gotta love it. mary

I can't believe you still have the piggie flu and you are taking radiation. It all sounds awful to me. Michael has lots of Spideman stuff if you need anything. Cars, trucks and webs!! Oh, I forgot pj's too. With feet in them. Please take care of yourself. Love you bunches! Auntie Susan

Too bad you can't watch "Nurse Jacki"e during those 20 minutes. Of course she might have stolen your Vicodin by now. Sara S.

I think I may go out and get you a Minnie Pearl hat with the price tag after that inspiring song. Bruce

I remember that song from “Hee-Haw”! You are my hero, Mary. Jan

• Monday, February 8, 2010 4:14 PM, PST
Radiation Day 9: Met with the oncologist after radiation today. He says all is going well. Friday will mark the halfway point, so there will be a midterm. It will be hard. Mary

Thanks to you Mary, I've had “Hee Haw” and Spiderman on my mind. Now there's a combination I never would've expected. Oh, and since they don't give you beer at radiation, I'm drinking one on your behalf every day. Let me know if there's anything else I can do. Karen S.

Sis, I woke up Sunday morning with a cold and was feeling pretty sorry for myself. Then I read your Journal entry. You make it very difficult for me to cry myself a river when you are handling exponentially more with such grace and humor. During the most difficult times, try to remember the example you are setting for us mere mortals and ALWAYS feel the love that is exuding from this Journal. You have always been a difficult act to follow. Keep fighting the good fight. Much Love - Brother Matt

• Wednesday, February 10, 2010 10:06 AM, PST
Day 9: Here’s my understanding of how radiation works. It won't be funny, but it will be on the mid-tern. If you want an official version, there's a good description on the American Cancer Society's webpage.

A computer is programmed to shoot radioactive waves into my brain, all targeted for the 4th ventricle, the area where my original tumor was and where the new tumor is. The machine moves around my head as if my head were the sun (I think of my head that way) and the machine were a planet. The analogy is not great because the machine stops about seven times to shoot radioactive waves into my brain and I hear planets keep going. The nexus point of all the waves is the 4th ventricle, so it gets heavy radiation while each of the other areas get less radiation (about 1/7). the radiation harms DNA in the tumor and in normal cells, but the normal cells heal much more quickly than the tumor cells, so the hope is that the tumor cells will die, but the healthy cells will recover. The reason that fatigue is so extreme is that the body is working hard to heal. A little like Star Wars in my brain. I think the computer is R2D2. I'm not sure which part of the process is Wookie. Thanks for checking in. Mary

...ok- I think the wookie is the radiation energy after it has hit your 4th ventricle- it's big, bad, makes a lot of noise, and is doing all kinds of damage to the bad guys. Jennifer G.

• Day 10: I am feeling much better, so today will be the first of a two-part series on the benefits of brain tumors.
1) I get to take naps three times a day, go to sleep early and wake up late.
2) After brain surgery, good friends just showed up with chocolate chip milkshakes. (That's how I knew they were good friends.)
3) With radiation, the swine flu and pneumonia, I've lost half the weight I gained after brain surgery.
4) Hallucinations, while confusing at the time, are funny in retrospect. I haven't had hallucinations with radiation, but I did with brain surgery. There's the day when I perceived about 20 people in the room, so I asked Ann to have everyone go around and introduce themselves so that I would know who was there. "Okay," she said, "but it's just me and your mom." And then there was the day in Intensive Care when I thought my teaching colleague Alana had brought all her seniors into the ICU to do their senior project presentations. I thought this was inappropriate and finally tried to get up to leave. When mom asked where I thought I was going at 3 in the morning, I told her I was going home where I could get some sleep. In a similar hallucination, a nurse came to hook up an IV, and I told her I needed to give an assignment first. "To whom?" she asked. "To all these students!" I responded, gesturing to the room, with some exasperation. She waited until I wrote the assignment on the “board” and said, "Okay." In a hallucination that some who have not had this kind of experience may find more gruesome than funny, I thought I was in the crematorium and was very irritated to find that my hospital pajamas were flame retardant. Figures. It was after this hallucination that my doctor reduced my steroids.

5) I learn the kindness of so many supporting me and Ann: notes on CaringBridge, rides to the doctor, a cot for my graduate classes, meals, yard work, medical care, sick day donations, flushing the toilet for me (that's love), making the shower accessible…
You are one of the good parts. Mary

You have the most beautiful, um... way of noticing, describing, and appreciating people. As you take note of the advantages of brain tumors, I take note of your graceful and beneficent negotiation of this craziness. Love, Colleen

I think you missed your calling. You should be a stand-up (I don't know, maybe sit-down?) comic. Give up teaching English! Love you, "Auntie" Cindy

I'm very glad to see that sleep came out as the number 1 benefit of a brain tumor. That sounds like the Mary I know and Love! Susan G.

• Thursday, February 11, 2010 2:34 PM, PST
Day 11: I'm not sure how I miscounted, but my midway point is next Wed, so your midterm will be on Wednesday. I know you're relieved. You have the holiday weekend to study.

This afternoon will be the second of a two-part series on the benefits of having brain tumors.

The most significant benefit of these brain tumors has been the access I've had to communities that I now realize I never had access to before: especially public interactions with homeless people and African Americans. It may be helpful to know that I am white. Pale, actually. Some would say “pasty.”

I have two stories of interactions with people who are homeless that I like best. Both occurred when I started taking the bus after my brain surgery. When I was downtown one day, leaning on my walker and hesitating on a corner to get my bearings to figure out where the bus stop was, two homeless men offered to help me across the street. Since I didn't need to cross the street, I said no thank you, but they insisted, so finally I crossed the street with them. One did the wild gesticulations of a traffic cop and the other walked protectively by my side. I said thanks and let them get on down the block before I crossed back. In another incident, I was riding the bus home from downtown one day while I was still wearing an eye patch on my left eye and a homeless guy next to me was flirting with me (amusing in itself). He said to me, "You have the most beautiful [panicked pause] eye."

Interactions with African Americans have been the most dramatically different. There is some tension in this area between blacks and whites, particularly because this area has traditionally been an African American neighborhood but with gentrification it's becoming much more white. African Americans of all ages, though, are the most likely to stop and help me or ask me if I need help. Going through the park one day, an African American woman who seemed to be going through chemo stopped me, put her hand on my shoulder, and delivered a graceful prayer. A group of older teenage African American boys hanging out at the park, drinking whiskey and smoking dope, move aside to allow me to pass and kindly wish me a good day. It's hard to describe the change, really, but it's quite lovely.

Thanks for checking in and thanks for being one of the good parts. Mary

I have to tell you - - your entries have made me fall on the floor with laughter. I shared the two lists of positive reasons for having a brain tumor with my colleague, and we were both CRYING. You are such an inspiration!!! Love you! angelique

Thanks for the reminder that sometimes an unplanned and seemingly unnecessary crossing of the street can still get you somewhere. Your mindset is fantastic, and I'm sure that takes work, just as do your current physical challenges. You're rising above, like a champ. Love, Forrest

Thanks for keeping me/us up to date on all of your experiences. You are an inspiration in the way that you don't let this physical sickness make you emotionally sick. Humor is a good preventative medicine for sure.
I've been thinking of the realities of how it is for you to navigate with a body that works differently than it used to while I wrestle with my sprained ankle and crutches this week. You bring much grace and dignity to the absurdity of it all. I think you should start wearing a cape so that the rest of the world can be aware of your super-powers. Big Hug to you! Pea

• Saturday, February 13, 2010 11:37 AM, PST
Day 12: Feeling optimistic. Now that I'm approaching the halfway point for radiation and the end point for the flu and pneumonia (I hope), I am feeling more optimistic than I have in some time.
So instead of Hee Haw's "Doom, Despair and Agony, Oh Me!" Today I'm humming Blues Travelers’ "Optimistic Thought":

Life I embrace you,
I shall honor and disgrace you,
Please forgive if I replace you,
You see I'm going through some pain,
But now I see clearly,
And the dawn is coming nearly,
And though I'm human and it's early
I swear I'll never forget again.

Thanks for hanging in there with me. Mary

The homeless dudes "helping" you across the street had me in tears at work! Reminds me of a joke - two blondes are walking on opposite sides of a busy street. One blonde yells over to the other "How do I get to the other side?" The other blonde yells back "You should know; you're already there." Okay it didn't really remind me of that but I just heard that joke and was looking for someone to tell it to. It's the struggle that defines us and you are not only being over-tested but also passing each and every one with honors. Brother Matt

Hello Dear Niece, You are truly amazing. Lots of love to you and Ann on Valentine's Day. Auntie Susan

• Tuesday, February 16, 2010 3:11 PM, PST
Day 13: Still feeling better. Since Sunday was Valentine's Day, today's entry is dedicated to (and about) Ann.

For those of you, like my mother, who often confuse me and Ann, here are some ways you can tell the difference:
1) Ann's hair is white like snow. Mine is auburn like...what else is auburn?
2) Ann's hair is affected by gravity. Mine is not.
3) Ann is the one who figures out the bill at the end of a meal. She is also the one who takes out the recycling and the trash, cooks our meals these days, and cleans up. I am not.
4) Ann walks about 5 miles roundtrip to and from school each day. On an energetic day, I walk around the block.

I read some information on radiation and, wanting Ann to notice that I should eat bland, soft foods that are not too hot or cold and are easy to swallow (obviously mashed potatoes), I suggested she read the material as well. She noticed that I should get 15-20 minutes of exercise each day. So today for lunch I had broccoli and tofu and then went for a walk.

Our friend Ellen told us about a story she'd heard on public radio about six-word memoirs, so I have written a six word valentine story about Ann: Ann-a-Plan holds my hand: I'm okay.

Midterm is tomorrow. Open blog. You will have to make inferences based on your deep understanding of the blog. Mary inmy teacher voice (scary I know).

You crack me up. I’m glad you sorted out the hair thing: I was always a little confused. Take care, The only Irishman in the Palouse. Declan

How about "auburn like a sunrise"? David M.

• Wednesday, February 17, 2010 9:44 AM, PST
Day 14: I haven't actually had my treatment yet today, but I have two other appointments and I know you're anxious for the midterm, so I decided to go ahead. I found this bit of inspiration when recently I ran across an American Studies exam I wrote years ago. It's so encouraging that I thought I'd share it with you:
Sometimes you're the windshield. Sometimes you're the bug. Be the windshield.

Section One: Multiple Choice
1. Health issues that Mary has faced in 2010 include:
A) trench mouth, hemorrhoids and warts
B) broken arm, split lip, sprained ankle
C) a cold
D) piggy flu, pneumonia, and brain tumor
E) all of the above.
2. Today Mary will complete her 14th radiation treatment. There will be 28 total. This means that she will have completed:
A) 14%
B) 28%
C) 50%
E) all of the above
3. Mary had her hair cut before she started radiation. Her hair on the sides is now 90% shorter than it was before the haircut. In the back, her hair is 80% shorter. The hair on top is approximately three times longer than the hair in the back. This means that Mary looks most like:
A) Barack Obama
B) Kramer from “Seinfeld”
C) the little Dutch boy
D) Farah Fawcett in the 1970s
E) a wookie

4. The best title for this selection would be:
A) Cheers!
B) Doom, Despair and Agony, Oh Me!
C) Tumor Humor
D) I'm Okay
E) None of the above

5. Mary is lucky because she has (a) patient, kind, loving and supportive
A) mom and dad, sister and brother
B) nieces and nephews, aunts uncles and cousins
C) friends, colleagues and students, past and present
D) partner
E) all of the above

Short Answer: Choose one of the following short answer questions to respond to in the guestbook:
A) What have YOU been up to lately?
B) Share one amusing anecdote, quotation, or joke.

Score your midterm. You will not report your score, so if you cheat it's only yourself you have to face in the mirror each morning:

Multiple Choice Answers:
1) D) piggy flu, pneumonia, and brain tumor (+15 points)
2) C) 50% (+15 points)
3) B) Kramer from Seinfeld (correct answer: +15 points)
C) the little Dutch boy (that's Ann...tricky--no points)
D) Farah Fawcett in the 1970s (incorrect but you get 25 points)
E) a wookie (incorrect and you lose another 10 points)
4. E) None of the above (+15 points with 10 points extra credit if you suggest a good title on the guestbook)
5. E) all of the above (+15 points)

Short Answer: Give yourself the score out of 25 that you think you deserve. If you do not respond, that's an automatic zero. Tough, I know.

Part Two starts tomorrow.

B) So, a cheeseburger walks into a bar, sits down, and orders a drink. The bartender takes one look at him and says, "Sorry, we don't serve food here." XO, Forrest

Jennifer's been singing that "Hee Haw" song for two days now--becoming a tad's pretty clear why that show didn't get much play north of the Mason Dixon...maybe you could cite the theme from "The Jefferson's" in your next update. xoxox--todd

I did pretty well on the midterm, although lost too many points by choosing wookie. I think there should have been a photo attached to make that fair! Oh well. Short answer: I’m still struggling with my treatments and spend most my time in bed. But I do have hope that I will get better some time. As will you! Tressa

Before I finish my midterm and score myself, I need to know something. Who the heck is Wookie? (According to the rules of the guestbook, I have up to 2 hours to complete my exam. Thank God!) Cindy

I scored 70 points on the Multiple Choice. I missed the question about who Mary looks like - she and Ann have been together for so long that they are starting to look alike to me - so I selected C for Little Dutch Boy. I also got extra credit (before I realized that there would be extra credit. I would title this midterm "If you can't duck it f*ck it!" (sorry for the profanity, Sylvia!). Pea

Let me offer a quick short answer. Copernicus (my dog) and I hiked up to Poo Poo point the other day, and have been trying to enjoy as much of the beautiful weather as possible. Sara B.

My score was better than average and less than perfect...I don't think I could handle perfection...too many expectations after that. :) What have I been up to? On Monday I took my four, yes four, nieces and nephews, age 13, 11, 11, & 9, to the Pt. Defiance Zoo and the best part of the zoo was when the lemurs sat upright on their butts, sunning themselves with arms and legs wide open and their long tail out to the side. We all imitated them at different points during the day, but concluded unless someone knew why we doing what we were doing the bliss was lost on them. So, now that you know...when you get a chance to get out and sit in the sunshine, try it out. Lovely really and worth a good chuckle. un abrazo, ally

Ding, ding, ding! You are 100% correct. Thank you very much! Diana has a perfect score. See I have been paying attention! Actually, I did get #4 wrong - I answered Tumor Humor - which I believe is the correct answer. i would add another title "Make 'em laugh." Because that is what I am doing. Hugs! Have a happy hump day! Diana

• Thursday, February 18, 2010 3:37 PM, PST

Day 16 (For those of you paying attention, I actually miscounted so I'm one day ahead of where I thought I was...) Good job on the midterm. Special kudos to Diana who for sure got 100%, to Pea who named the section and to Forrest who told a joke. What is a wookie? The kind of creature who is the hirsute Star Wars character, best friend to Hans Solo, Chewbacca.

See you for Part II! Mary

1 comment:

  1. I'm mostly just grateful that my nom de plume is not Pee.


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