the daffodil quill

closing down the daffodil quill

2005-12-10T09:48:00.000-05:00

10 December 2005

Greetings, all:

This will be the last post in the Quill, as I am concentrating my efforts into my website (rusvw.com), which will have updates regarding Mom and her battle with cancer. On 1 January 2006, I will delete this blog entirely, with these 30 posts archived on rusvw.com.

Thanks to all of you who have stopped by and have supported me through these tough, challenging, but ever-inspiring days. Mom has been denied a treatment these past 4 weeks due to very low white blood cell counts, and so now the race is on to up her numbers as quickly as possible so that she can receive at least one or two more rounds of treatment before they reassess the stage of her cancer.

All of my kids have been sick during these past four weeks, so it has been doubly frustrating for all of us that we cannot get together. Her WBC numbers are so low that any exposure to such germs might mean certain illness for her, and that could very easily lead to pneumonia and death.

So we do what we can from a distance to support, to love, to care, to cherish these days.

I wish you all the best, and please stop by rusvw.com for frequent updates.

Love and peace to all,
Rus

Three to go...

2005-11-07T21:36:00.000-05:00

Mom's doing so very well. After running into a string of cancelled treatments because of low white blood cell counts and fainting spells, she has courageously taken great steps to secure her last two treatments. This leaves only three treatments remaining before they assess the success of the treatment and then determine what further action to take.

We already know that the treatment has been successful. It has given Mom the opportunity to live a new life with every day she wakes. Despite some of the setbacks that have occurred since she began this tough journey last May, her triumphs have overwhelmed us all, and we continue to be in awe for how she approaches each day with assertive optimism and praise for having the chance to enjoy all she's been blessed with in this great earth.

But we have been doubly blessed these past few months, and she remains an inspiration to us all.

Her doctor started her on Neulasta with her most recent treatment. Neulasta is supposed to reinforce the body's immune system and keep the white blood cell counts high. This not only fights off life-threatening infections, it keeps her treatments on schedule (or so we hope!). For once I can say that the drug commercials that nauseate us all have served a greater purpose in Mom's life. Again, I am thankful.

I have been immersed in the world of NaNo (national novel writing month), and so the bulk of my writing has been showing up on my personal website (www.rusvw.com). There, you can find updates on my novel and other assorted goodies (but not too, too many...the site is still in its infancy stages as I learn HTML). I encourage you to stop by, though, and give my words a quick read. And, if you feel up to it, please do drop me a note and let me know what you think. Other fellow NaNo writers have benefited greatly from the feedback they've already received on their works-in-progress.

I will do my best to keep you updated here at the Quill during this month. Mom's off for a week (the equivalent of a football "bye" maybe?) so that her body can rest up. In the mean time, keep hugging the ones you love, and offer up a healthy smile to everyone else. . . .

The Difference between NEGATIVE and negative

2005-10-24T20:46:00.000-05:00

Greetings, all:

First, the good news: My PET/CT came back NEGATIVE for any additional lymph nodes in my system, and there was no evidence of cancer anywhere at all.....More on that test, though. I have written much already about it in my daybook....may be a good thursday thirteen topic to touch on...

Second, Mom's experiences have been negative in getting treatments; she hasn't had one for several weeks because of fainting and low white blood cell counts. Her spirits are up and down these days, so we are doing what we can to keep her positive and to remain focused on beating the cancer. Just yesterday she shared with me that she revised her "I want to live till" goal: To see my son enter kindergarten. He's 14 months old now, so she's determined to make it to 2011......Knowing Mom, she'll make it to his high school graduation!

Sorry for the short post! It's been a few days since I've been able to work online. Conventions, birthday parties, housewarmings, grades, publications, family.....you know: The same stuff everybody else is going through in their lives!

God bless to all,
Rus

The problem with little leagues

2005-10-17T19:45:00.000-05:00

In Catherine's post at The Fountain Pen (October 17, 2005), she talked about the problems associated with little leagues and rec teams: the parents. It reminded me of an column I wrote in September of 2001 for a local parenting magazine called Baltimore's Child. I've included the article in its entirety below. Unfortunately, it's a true story.

rvw :)

Hey Fans, Remember: It’s About the Kids
by Rus VanWestervelt

It is a typical hot summer night in 1988, years before I will be a father. I sit in the broken-down wooden stands at a little league field in Southern Maryland, scratching notes for the local paper about an up-and-coming player named Jeremy. He’s 11, like most of the other kids in this league, and he’s attracted a fair lot of fans.

Jeremy steps up to the plate with two outs, takes three practice cuts, then stares down the pitcher.

“Atta boy, Jer-- Do your thing,” says a fan behind me.

“He’s gonna serve up a nice fat one for ya, you just wait for your pitch,” says another.

Jeremy doesn’t need to wait. He hits the first pitch over the third baseman’s head and slides safely into second, standing and dusting himself off before the cut-off man has made the relay to the boy covering second base. Just another at-bat for Jeremy.

“Atta boy, Jer. Atta boy.”

After the cheering for Jeremy subsides, the fans turn to home plate, and a chorus of groans surrounds me. I look up from my notepad and see that a new player has stepped into the batter’s box; he is squinting to catch the sign from his coach at third base.

Then three practice cuts, just like Jeremy.

Then the first pitch.

“Strike one!”

The crowd around me begins to dramatize their disdain by pinching their noses and waving hands in disgust. The home team is down by a run, and it is getting late. Soon, the curfew rule will make this game official.

Another practice cut, then “Strike two!”

The dramatic groans turn to personal attacks as the batter tries to ignore the heckling from the stands. He squints harder at his coach, but he can’t get the sign. After calling time, he runs along the third base line to his coach, and with each step, the boos get louder.

The man next to me refocuses his anger to the home team’s manager. “Hey Willy! Whaddya doin’? I’ll tell ya. You’re stranding your best player out there on second. That’s what you’re doin’.”

The manager ignores the criticism, as he does every game, but the boy trotting back to the plate can’t keep his focus. Somewhere between his chat with the coach and stepping into the batter’s box, he forgets the instructions, and he chooses to bunt at a ball way out of the strike zone.

The umpire calls it a ball, but the catcher appeals to the fielding umpire, and he says “Strike Three!”

Third out. Game over. The up-and-coming player named Jeremy stands stranded on second.

In leaving the stands to meet their sons, angry fathers cross paths with umpires and coaches.

I remain on that old wooden bench with notepad in hand, but what I see says it all: fathers swear at coaches and umpires while kids from both teams stand by, popping gum and wanting to know if they’ll be getting a snowball or ice cream cone tonight.

The umpires and coaches are patient; they listen for a few minutes, then walk off the field, saying they’ve got another game to officiate in an older league or it’s time to take the kids to get their postgame treats.

As the field begins to clear, I see the boy who bunted for a third strike, sitting with another player on their team bench: both have elbows on knees, chins in gloves, eyes on home plate.

For the kid who struck out, no reassuring words from a coach, no parent at the game, and no desire to get that ice cream.

But a friend sticks around to wallow in the pressures of little league ball. Maybe he was last week’s target.

Before heading home I call my editor from the park and let her know that the story’s not about Jeremy; it’s about the parents and how they forget that these little league games are about the kids trying to win while still having fun. The real story, I tell her, is the parental pressure put on these young athletes to perform and strategize like the major leaguers, as if they were getting paid something much more substantial than a 95-cent ice cream cone.

My editor tells me the story lacks substance and to go with the Jeremy feature. I hang up the phone and stare out at the now-empty field.…

Soccer season for a group of girls in Crofton won’t be starting this fall because a referee--a child herself--was harassed by hostile parents after a game earlier this summer, forcing the Crofton council governing youth sports to dissolve the team in an effort to break up the parents.

My own daughter will begin playing recreational sports with your children this month; I hope to see you in the stands, ready to cheer on our kids and give them the positive experience they deserve.

# # # #

Will You be no. 500?

2005-10-16T16:19:00.000-05:00

Before posting today, I saw that my sitemeter was at 499 visitors....Will you be no. 500?

I spent most of the weekend building my new website, www.rusvw.com. It's still under very heavy construction (hard hats are still required, thank you), but I am extremely pleased with what I've learned just in the last two days in web design. Thanks to Catherine at The Fountain Pen for ongoing goddess-type advice in this area....

My website will also be the home for my Novel in November that I am writing (go to NaNoWriMo for all the info you could ever desire about writing a book in a month). So please, fair friends, I encourage you to follow the saga of my journey, which begins in just 15 days.

Ok. Off for the usual evening ritual. But I will do my writing pushups later tonight here at The Quill... :)

The Friday Faint

2005-10-15T05:09:00.000-05:00

Just before treatment 14 was to begin yesterday, Mom fainted. She got up to use the restroom, took a few steps, and collapsed. Of course, this canceled the treatment she was scheduled to receive. They rushed her to the ER and ran their usual battery of tests on her, only to conclude that there was nothing wrong with her and she could go home.

This is the fourth time this has happened, though, and I find it remarkable that nobody knows why this keeps happening. Her oncologist has referred her back to her general physician to see if there is anything she might be able to do, but she is already aware of Mom's history of fainting. It is not likely that another visit is going to shed new light on why the fainting continues. This has been a problem now for years. In fact, it's one of the things that prompted her to get so many tests performed in the last year.

It might even be a stretch to say that, if it weren't for the tests run to discover the origin and cause of her fainting, she might never have reached the point where the cancer was discovered when it was.

This doesn't make me thankful for the fainting....it has prevented her from receiving treatment several times. But it does make me believe that we cannot ignore any ailment and make assumptions and rationalizations for their existence. Mom's system has been compromised greatly by the war that is raging within her: first, there's the cancer that's doing its very best to take over every part of her body; second, there's the poisonous chemicals being injected in her that are taking its best shot at annihilating that cancer, but in the act of combating the disease, it is weakening every other part of her body. She is hosting an all-out war within her. It is her soul, her spiritual strength that provides the perameters for this war. She may not be able to control the scientific battle that rages on, but she can control everything else--and this is where we all can see what we may do now for ourselves, should such a battle ever have to be fought within our own body.

Mom hopes to see her general physician early next week. And although I doubt any breaking news will emerge from the meeting, I do hope that what she can control is re-emphasized: drink plenty of water, eat balanced meals, get plenty of rest, and of course, never stop believing, never stop fighting.

In other words, do the things we know we all need to do to keep life flowing freely and fully through our bodies. . .

Thursday Thirteen #3

2005-10-13T05:57:00.000-05:00

13 Super Sweet Morsels about Rus

1. I'm back on the health wagon again after a brief respite. I don't know why I ever got off. I was loving the way I was feeling, I was losing weight, my clothes were getting too big for me--all of the motivation I needed personally to keep going was there. But for some reason, I was derailed. I have to lose 20+ pounds by December 7, and I know this time I'm not going to be able to do it without lots of exercise, so I'm going to have to find the time to build that into my schedule.

2. I have to stop thinking that this is an option. I have to stop thinking that more time is somehow going to be made magically available in the near future. It's not. We live our busy lives, we raise our kids, but we can never ignore our own health in the process. Being healthy in both the body and the mind is absolutely critical to being able to do the very things that you say are stopping you from working out.

3. My PET/CT is scheduled for Tuesday at 1 p.m.

4. Finally, I am going to be done with these preliminary tests and move on with my life--in whatever direction that may be. But as Catherine mentioned in her reply to my last post, it's that period of waiting that is absolutely the worst.

5. I am off of school today because of Yom Kippur! I have nothing spectacular planned today, which makes me very unstressed. I can focus on writing and being healthy....

6. The first book I picked up this morning to help re-rail me back on to the healthy tracks was Zen Mind, Beginner's Mind by Shunryu Suzuki, one of the most matter-of-fact zen books I have ever read. It's a short read, only 138 pages, so I will carry that with me today to reinforce this process of rerailment...

7. I was being more Zennish in my daybook this summer than I realized. Very similar to one of my quotes posted in last week's Thursday Thirteen is this morsel from page 27 of Suzuki's book: "But usually, without being aware of it, we try to change something other than ourselves, we try to order things outside us. But it is impossible to organize things if you yourself are not in order. When you do things in the right way, at the right time, everything else will be organized."

8. Isn't that we usually do when we don't feel good about ourselves? We look outward and find fault with others to fool ourselves in thinking that we are better, we are more in control? When I have healthy body, healthy mind, I am a more patient father and teacher, I am a better writer with few gripes, if any, I am more focused on solutions and less focused on problems, I am more focused on living than I am on dying.

9. Instead of making apologies today for not writing friends sooner, I think that I will just write them instead and say thank you for being such good friends.

10. I wrote another 1000 words yesterday, but it was mostly daybook writing (actual story writing for another piece that I am doing--not the NaNo piece). I also did some revision to that same story, and it is only through writing daily am I able to begin to see remnants from previous drafts being essential to the more solid draft that is now taking off. Very exciting stuff to see that I have created pieces of this puzzle by writing daily, and now the pieces are beginning to link together without being forced.

11. but that's true about life, I believe. You can't force the pieces of your journey together. You can't make them fit. You work on developing them, one by one, and when the time is right, the join perfectly. You made them to fit just that way, but the time had to be right for them to fit.

12. I will be presenting next Friday in Ocean City, MD on the writing and teaching of creative nonfiction. The conference, which is run by the Maryland State Teacher's Association, is absolutely the best-run conference I have ever participated in.

13. The test results from my PET/CT will be available to me about 18 hours before I present. . . .They will be my number one item in next week's Thursday Thirteen #4!

Links to other Thursday Thirteens!
1. The Fountain Pen
2. Leanne
3. InterstellarLass
4. jak

Get the Thursday Thirteen code here!
Thirteen things is all I ask for, and what do you get in return? Linkage! If you do it, leave a comment here and link me to your Thursday Thirteen. I will be sure to update my entry with links to yours, and then you can continue the chain if you like! I will link to everyone who participates and leaves a link to their 13 things. Trackbacks and comment links accepted!

Approved!

2005-10-11T21:42:00.000-05:00

The call came in just before 5 today as I was headed to the University to teach my Tuesday night class. Suzanne, the receptionist for American Radiology in Frederick who I've been working with, called to tell me that my insurance company found it in the goodness of their hearts to grant me permission to get the PET/CT. I'll call tomorrow (Wednesday) to see if there's any time on Friday. It'll be good to wrap this up and get some definitive answers. As I mentioned in a recent post, much of the anxiety is in the waiting and the not-knowing stages...Of course, I will keep you all updated. I thank you all for your continued prayers and well wishes.....They provide such strength and love, and I appreciate all of them.

Writing 2K Words Daily

2005-10-11T04:13:00.000-05:00

I'm getting in shape for NaNoWriMo, which begins midnight, November 1, and this is going to make me a better teacher for my seniors, I can tell already.

One of the assignments I ask them to do on a near-weekly basis is write a "vomit" draft, which is a 500-1,000-word essay that is written so fast that the little watcher at the gates inside your head telling you You Suck and everything else negative to stop you from writing can't keep up with you (the condition of that last sentence--poorly written as it is--is a product of vomiting; but I don't care. I'm throwing up words right now...do you really think I care how they look when they're being projectiled on to the paper???).

Now that I am doing the same thing on a daily basis, I can understand both the thrill and the anxiety that goes along with vomiting such letter and word constructions. First, the thrill: I LOVE writing uninhibited in my daybook; it makes me feel free with my ideas b/c I know that what I write is not intended for any audience but me. I choose what words I might share with a larger audience, but usually that ends up being no more than 1 or 2 percent of what I've actually written. The rest is all pure mess--words all over the place, ideas trying to find a home, frustrations sorting themselves out. It's therapeutic, necessary, and productive. I never feel better than when I have a good upchuck in my daybook.

The anxiety, of course, is that I want something to come of my writing, especially for NaNo. That's a lot of words to put on the page to then hit the delete key at the end of November just to receive a certificate and join an exclusive NaNo club. (I'm not into exclusive clubs anyway). But I am anxious b/c I want what I throw up on the page to have some meaning, some purpose that I can use for my benefit as well as the benefit of others.

Here's my 25-word blurb that describes the book I will be writing in November.
"A man approaching middle age sets out on a 30-day journey to determine the importance of his existence and his interrelationship with the earth."

I know. Very Siddhartha-like. But it's my Siddhartha, and I genuinely believe that this fictive piece that I will be writing will be as good for me as I hope it may be for others. I don't plan on doing any outlining, character-sketching, or plot detailing on this. I am going to begin on midnight, November 1, with Day One of the journey, and just keep on truckin' at a speed of 2K a day until I reach my destination on November 30.

Imagine what I may learn along the way.

I'm not holding back on this piece. It's a work of fiction, but I won't censor myself to the subjects, topics, or even places I may visit along the way. I will vomit the whole 50K and trust the process that when I reach my imagined destination somewhere on the west coast--a place I've never even been to--I will have gained something more than knowing I joined an exclusive club of November novel writers.

A Tale of Two CTs

2005-10-09T20:22:00.000-05:00

Ok. I have to admit...I really don't have a great story to follow that unbelievable heading, but I had to use it before somebody else did...So THERE. : )

Really, though, this is a story of Mom and me and two treatments. –well, sorta.

Mom received her thirteenth treatment on Friday. She's got FIVE more to go until her doctors evaluate the effectiveness of the treatments she's been getting. Hey—I think they've been damn effective, given the fact they gave her weeks to live last May. She is a beautiful, strong woman that is just living a new life as wonderfully as she possibly can.

That's her tale. Mine's not as good. (But hey again: It's what you make of it, right?)

I was scheduled for my PET/CT on Friday. This was the biggie for me to determine what the heck that thing inside my lung was all about, not to mention something looking a little out of place on one of my lymph nodes on the right side of my body. Getting a PET is easy enough to do; getting a CT is even easier. Getting a PET/CT at the same time, however, seems to be a little more challenging. None of the imaging centers in my local area can handle this test, so I had to schedule the test at a center that was about 60 miles away from my home. No big deal, of course. The test is worth it. It's a full-body scan that detects any abnormalities/cancer-type things taking up residence in your body. After this test, I would finally have some semi-definitive diagnoses either ruling out or confirming the presence of cancer, especially throughout the lymph system. My sister had lymphoma when she was 31, and now mom has it in her lymph system at the age of 79. Me, being at the comfortable age of 40, cannot NOT take this concern seriously. My doctor agrees, hence the PET/CT.

The problem, though, is that the PET/CT costs a pretty penny, and my insurance company doesn't like the idea of me getting this test. Apparently, they are only interested in paying for it if I have already been diagnosed with cancer. This is ludicrous. The purpose of the test is to rule out cancer, not affirm a pre-existing diagnosis. Getting this test pre-diagnosed helps save them, the insurance company, buckets of money b/c the cancer can be detected early, treated aggressively, and annihilated beyond recognition. POOF ZAP, and it's gone. Thanks for stopping by.

Unfortunately, my med insurance group thinks otherwise. My test for Friday was cancelled, and now I'm stuck in wonder-limbo, agonized by the not-knowing-part of all of this. Kills me more than I can describe. So tomorrow, Monday, I will contact my doctor and find out the status of his fight to get this test covered.

My doc is phenomenal, so I think that if it can happen, he is the one to do it. I'll update you on Monday.

Now...On to other things. Like NaNoWriMo... (btw, I'm at word 512...nearly one-third of the way there!—(You'll understand in a minute.))

Boy, are you going to be sick of me. I'm going to be writing a lot in the next few weeks, sharpening my skills in writing long entries that actually mean something. You see, I have joined the National Novel Writing Month challenge to write a 50,000 word novel during the month of November (go to the NaNoWriMo website for more info). That's right. Thirty days and BAM—that puppy's written from beginning to end. Very cool indeed. My friend K-Man has done the math already: that's 1,666 words a day for thirty days to reach the word-count goal. Really, though, there's going to be fluctuations from day to day. However, on an average, 1,666 is very manageable over those thirty days (including turkey day—no rest for the artiste, eh, mon cherie? Just pass the pureed turkey and gravy and that nice ol' straw and I'll be good to go...).

Why am I doing this? Several reasons that should be mentioned here.

1. I LOVE deadlines. Crave them. If somebody dangles a deadline in front of me, I'm sure to make it. (Clarification here: that is, when I'm running the show and in full control. I'm the advisor for our school yearbook, and because I'm big into delegating responsibilities, I'm finding that the result is a lot of missed deadlines—hey, teachable moments, right?)

2. Completing NaNo will help me get a chunk of confidence under my belt that will be a real boost for the ol' inner morale. It'll remind me of what I am capable of achieving.

3. I've got a really good plot idea/frame/engine for my story, and I'm glad it's going to become a realized piece of writing.

4. I want to build up my daily word count and sustain it long after NaNo's over.

5. Why not? I love to write. It's doin' what comes naturly.... :)

And with that, ladies and gentlemen, I'm going to end this post at about 900 words, more than half the distance to the daily goalposts for the month of November. Piece of CAKE. This took me less than 40 mins to write, so I figure that, come Nov. 1, I'll be able to crank out the 1,700 words in under 90 mins....

Like I said. Piece of Cake. :)

Rus

Thursday's sweet quotable morsels...

2005-10-06T21:23:00.000-05:00

13 Super Sweet Quotable Morsels brought to you from Rus' summer Daybook

1. "If I hide who I am from the world, I can get so used to it that I begin to hide from myself as well." ~~Georgia Heard.

2. "Let us roll all our strength, and all/Our sweetness, up into one ball;/And tear our pleasures with rough strife/Through the iron gates of life./Thus, though we cannot make our sun/Stand still, yet we will make him run." ~~Andrew Marvell

3. "'We were not yet done with Autumn,' I whisper to her in my arms. 'But Autumn, she seems to be done with us.'" ~~rvw, from "Alice Flows"

4. "It doesn't interest me what you do. . .I want to know what you ache for, and if you dare to dream of meeting your heart's longing. It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive." ~~The Invitation, Oriah Mountain Dreamer

5. "There's nothin' wrong/With me lovin' you/Baby, no, no/And givin' yourself to me can/never be wrong/If the love is true/Oh, babe, ooh, ooh/Don't you know/How sweet and wonderful life can be?/Whoo-ooh/I'm askin' you, baby/To get it on with me/Ooh, ooh, ooh....." ~~Marvin Gaye

6. "You cannot effect change in somebody else if you cannot be you. . .How can I expect you to be you if I don't know what it means to be me?" ~~rvw, 12 July 2005

7. "Such melancholy – such sorrow – such pain: This life denied life: Standing water/Still/Warm/Cesspool of a drown'd life/Dark algae that doesn't bloom/But becomes cancer – Finding a way out." ~~rvw, 14 July 2005

8. "Ginny says that the artist in you is going to come out one way or another—you can allow it to flow freely-out of you and into the air-where it can have its own life. It, that within you, needs to live freely—it is yours to nurture, to grow, to nurse—Until it is ready to fly. And when it is ready, your channels must be open to let it go. But when you don't let it fly, it warms in the lack of light. Swells, bloats, wallows in the sick environment. Becomes cancer, and decides to eat its way out of you to live on its own, which is what it needed to do in the first place. Either way, it's going to come out of you. It's your choice: through life, or through death?" ~~rvw, 15 July 2005

9. "Another realized bit of wisdom: Travel light—everywhere. It gives people the chance to focus on you rather than on all you are carrying around with you. This also applies, of course, to the 'other' baggage we carry around with us—or choose to. Let that go as well, and others will be doubly treated when they learn that the lightness with which you live goes true to the core." ~~rvw, 18 July 2005

10. "I am on the potter's wheel." ~~Alethia, MWP TC '05

11. "Relax. Breathe. You are still so uptight. Focus on the center. Go inward. . .deep within...and Breathe." ~~rvw, 26 July 2005, 11:39 a.m.

12. "Each waiting room has such a personality defined by its practice and the nature of its patients. Most of these people are not receiving the bad news. That's already taken place in somebody's office elsewhere. Here, they are talkative—even social—with the others who wait. They know each other, brought together by a terrible disease. The rules of membership into this club are deadly, but just like any other club, when you are in, you are accepted, you are loved. And in this room, where I am clearly not a member, there is a social element that I see at bowling alleys, grocery stores, and carpool pick-up lines at my daughter's elementary school. Or close your eyes, and you could be at the community swimming pool once more, where families share stories of everyday events that have happened since the last time they met to swim a little and socialize a lot. The only difference is that, come next Memorial day when the pool opens, most of these members will be dead." rvw, 17 August 2005, in the waiting room as Mom gets her treatment.

13. "Walk on, Walkin' Man." ~~rvw, 20 July 2005, but first from JT

Links to other Thursday Thirteens!

1. The Fountain Pen

Get the Thursday Thirteen code here!

Thirteen things is all I ask for, and what do you get in return? Linkage! If you do it, leave a comment here and link me to your Thursday Thirteen. I will be sure to update my entry with links to yours, and then you can continue the chain if you like! I will link to everyone who participates and leaves a link to their 13 things. Trackbacks and comment links accepted!

Good thoughts

2005-10-02T19:33:00.000-05:00

Catherine at The Fountain Pen hoped I might be able to post some good words this weekend, and I take her request quite seriously.

One of the reasons why I deleted this blog a few months ago is because I found that it was always so intense, so depressing, really. I needed to do something that was a little lighter, less serious. But in the few weeks that the Daffodil Quill was offline, I found that I had created a void within myself. I needed to write about all that was happening with my mother, with me, and I found it quite therapeutic to use writing as a means of helping not only me but others out there who have experienced--or continue to experience--this battle with cancer.

I can't deny the powerful purpose writing serves in my life, and so even if some of my entries are a bit serious and intense, please know that it is a cathartic process that helps me be there in a stronger sense for my mother and for others. God bless the power of the pen!!!!!

So good thoughts I bring to you tonight:
1. Saw mom today. She looks younger than ever, more alive than ever, and she marches on despite the overwhelming dread that she has another 12 treatments before she learns if the chemo is making a difference bigger than keeping her at a "surviving" level.

2. Wegman's opened up today about 15 mins from our house. 140,000 square feet of unbelievable foods. It's like Whole Foods and Trader Joe's on steroids, and THEN plopped in the middle of the biggest SuperFresh SuperStore ever built. We bought fresh danish pastries and feasted with mom (she made the coffee....).

3. My kids love my mother. They give her spontaneous hugs, think of her needs before they are asked, and want to be with her as much as possible. Even my 13-month-old son was flirting with her today.....Can you think of anything else that gives a 79-year-old cancer patient reason to fight on? Such energy do young children bring....

4. I am pushing on to lose 20 pounds by December 7, which is my next Dr.'s appointment. In the next two weeks, I have to get a PET/CT to check out some abnormalities of my own. But I take the lead of my mother and from countless other cancer patients--including my own sister--who believe that positive thinking and a strong, healthy attitude are the best defenses against all illnesses.

5. I love teaching, and I love my students. They bring me such strength, and I am proud of who they are as individuals. I am truly blessed to teach in such a school where respect, kindness, honesty, and charity are at the heart of the people I work with and teach. They are human--we all are--and mistakes are made. But these people are amazing. I wouldn't want to teach anywhere else in the world.

6. My writing is taking off. I'm working on a book-length piece of fiction that is just consuming every waking hour (and as I sip this Starbucks Sumatra coffee, it will be consuming every hour that I really should be sleeping)....Finally, I'm working through the challenges of prewriting and drafting that have kept this work off the pages for so many years.

7. Finally, I have nothing but good thoughts for all the wonderful people in my life. There are so many, and I do not take enough time to thank them. But now I should. There's no time like the present.....Time to dust off the writing paper and put a few letters in the mail.

My love to all.....Please spread the word about the daffodil quill...I hope it can serve as an inspiration to others. I feel so strongly that my mother's battle is one that transcends her own fight for life; it is a battle that we all can gather strength and recognize just how empowered we are to pave a happier path for this wondrous, wondrous journey.

Rus

my belated Thursday Thirteen

2005-10-01T07:39:00.000-05:00

13 Super Sweet Morsels (er--addictions) about Rus

1. Starbucks Coffee :)

2. Law and Order

3. the Medium

4. Writing in my daybook

5. The Grateful Dead, James Taylor, and about a gazillion other great performers

6. Shawn Colvin (sorry---she's in a league all by herself)

7. Amy Grant and everything she stands for

8. My kids

9. The Appalachian Trail

10. The Chesapeake Bay

11. Creating anything

12. Love, Love, Love

13. Life, Life, Life.... :)

Links to other Thursday Thirteens!

(leave your link in comments, I’ll add you here!)

The Fountain Pen

Get the Thursday Thirteen code here!

Thirteen things is all I ask for, and what do you get in return? Linkage! If you do it, leave a comment here and link me to your Thursday Thirteen. I will be sure to update my entry with links to yours, and then you can continue the chain if you like! I will link to everyone who participates and leaves a link to their 13 things. Trackbacks, pings, comment links accepted!

quick thoughts on Monday evening

2005-09-26T22:38:00.000-05:00

Greetings, all:

it is 11:43 p.m., and I am just now winding down from a very long day/night at school (back-to-school night)....

Mom finally received treatment 12 on Friday, but we all got quite a surprise--devastating, really, when the doctor congratulated her for reaching the halfway point. For some reason, we've been thinking she has 16 weeks in her first cycle, but alas: we were mistaken.

24 treatments.

That leaves 12 remaining.

ugh.

Treatment 12 took over 6 hours due to a new chemical she is now receiving that is strengthening her bones, which have taken a direct hit from the other chemicals they're using to control the cancer.

More tomorrow. Too tired to write, think, or do anything but.......ah, yes.

sleep.

:)

Thursday Thoughts

2005-09-22T21:22:00.000-05:00

22 September 2005

I know this is like any other day in America. But my experiences today have personalized the global ugliness of cancer.

My friend Catherine at the Fountain Pen found out only days ago that her son has testicular cancer. Today they removed the tumor, and I write these words waiting to hear from her in some way—any way—to learn of any new information concerning his status. For them, this experience has been nothing short of a whirlwind, swept up and thrown into the OR with the swirling anxiety and fear of cancer passing through them at will, nauseating them at times, I am sure. My prayers go out to Catherine and her son; may they be blessed with good news this evening.

Another good friend, TLight, told me tonight that her father lost his rather long battle with cancer late today. She was on the way to see him at the VA hospital, and when she arrived, the nurse pulled her aside to tell her that her father had just died. TLight has endured so much over these past few years, but she has never left her father's side. I find it most saddening that she could not be with him in his final moments. To TLlight and her family, I offer prayers of peace for them, and for her father, prayers of peace for his soul.

These two friends have been touched deeply by cancer today: one with the swift quickness of Rita, the category 4/5 hurricane charging toward Texas and Louisiana, and the other with sorrowful relief that her father's suffering has finally ended.

I'm in the middle. Not stuck in the middle, mind you. Just in the middle. I feel like the whirlwind never stopped after Mom's diagnosis mid-May, and I can't catch my breath to slow down, focus on what is most important, and be there fully for her right now. I'm not going to lie about it; there's much guilt I carry that I do not spend more time with her, and while I may be serving a good purpose by posting in this blog as often as I can, I feel like I don't spend enough time with her. It's so easy to fall into that lull of everyday life with ridiculous responsibilities that eat at your day, until you find yourself at the end of a long evening, thinking: wow....I accomplished a lot today, but at what expense? Everything I accomplished had absolutely nothing to do with Mom, Catherine, TLight, other loved ones, or even myself.

I'm sick of not living. Sick of it. Yet keeping that focus to overcome this feeling is getting tougher to do with each passing day. I have no idea why. I have always been such a positive person, so upbeat and optimistic. But lately, those feelings have been falling prey to the heavy depression that comes with the darkness of cancer that swirls around me, suffocating me as if in its grasp.

My love goes out to Catherine, TLight, and all of those who are touched by Cancer. Love does conquer all....we just need to focus that love so acutely to ensure that one day—hopefully very soon—a cure may be discovered that will finally put an end to the suffering.

TxNxM1

2005-09-18T21:55:00.000-05:00

18 September 2005

TxNxM1. This is what preceded the hand-scribbled "STAGE IV" that was written on the bottom of a copy of Mom's official staging for her cancer. I understood only one thing: Stage IV was not good.

The other scribbles--Letters and x's and numbers meant absolutely nothing to me. Nothing mattered but that I and that V that followed "Stage."

I and V.

I emailed my sister to tell her, and her response summed up my feeling. Wow. All along we knew it was this bad, but like I've written so many times here in The Quill, you just can't believe it when you see her, talk to her, SHOP with her.....

The three-page staging report was so cryptic to me--even after spending 10 years editing scientific journals and textbooks. It still seemed like a random scattering of words on a page, all run-in together in a polysyllabic nightmare. I felt like my 3 year old staring at text on a page, struggling, wondering, ever so desperately, what all those words really meant.

I had to Google a search for staging, and I got a good hit. www.cancerguide.org had a log of valuable info. Here's what they had to say about staging (this info has been taken directly from the web site):

Overall Stage Groupings (Roman Numeral Staging)

In this system, cases are grouped into four stages denoted by Roman numerals I through IV, or are classified as "recurrent." In general, stage I cancers are small localized cancers that are usually curable, while stage IV usually represents inoperable or metastatic cancer. Stage II and III cancers are usually locally advanced and/or with involvement of local lymph nodes. Actually, these stages are defined precisely, but the definition is different for each kind of cancer. In addition, it is important to realize that the prognosis for a given stage also depends on what kind of cancer it is, so that a stage II non small cell lung cancer has a different prognosis from a stage II cervical cancer.

Unfortunately, it is common for cancer to return months or years after the primary tumor has been removed because cancer cells had already broken away and lodged in distant locations by the time the primary tumor was discovered, but had not formed tumors which were large enough to detect at that time. Sometimes a tiny bit of the primary tumor was left behind in the initial surgery and this later grows into a macroscopic tumor. Cancer that recurs after all visible tumor has been eradicated, is called recurrent disease. Disease that recurs in the area of the primary tumor is locally recurrent, and disease that recurs as metastases is referred to as a distant recurrence. Distant recurrence is usually treated similarly to stage IV disease (sometimes the terms are used interchangeably) and anyone in this situation should investigate options for both stage IV and recurrent disease. The significance of a Local recurrence may be quite different than distant recurrence, depending on the type of cancer.

For solid tumors, stages I-IV are actually defined in terms of a more detailed staging system called the "TNM" system.

TNM Staging

In the TNM system, TNM stands for Tumor, Nodes, and Metastases. Each of these is categorized separately and classified with a number to give the total stage. Thus a T1N1M0 cancer means the patient has a T1 tumor, N1 lymph node involvement, and no distant metastases. Of course the definitions of T, N and M are specific to each cancer, but it is possible to give a general idea of what they mean.

T: Tumor

T Classifies the extent of the primary tumor, and is normally given as T0 through T4. T0 represents a tumor that has not even started to invade the local tissues. This is called "In Situ". T4 on the other hand represents a large primary tumor that has probably invaded other organs by direct extension, and which is usually inoperable.

N: Lymph Nodes

N classifies the amount of regional lymph node involvement. It is important to understand that only the lymph nodes draining the area of the primary tumor are considered in this classification. Involvement of distant lymph nodes is considered to be metastatic disease. The definition of just which lymph nodes are regional depends on the type of cancer. N0 means no lymph node involvement while N4 means extensive involvement. In general more extensive involvement means some combination of more nodes involved, greater enlargement of the involved nodes, and more distant (But still regional) node involvement.

M: Metastasis

M is either M0 if there are no metastases or M1 if there are metastases.

As with the other system, the exact definitions for T and N are different for each different kind of cancer.

As you can see, the TNM system is more precise than the I through IV system and certainly has a lot more categories. The two systems are actually related. The I through IV groupings are actually defined using the TNM system. For example, stage II non-small cell lung cancer means a T1 or T2 primary tumor with N1 lymph node involvement, and no metastases (M0).

I felt much better after understanding the significance of TxNxM1, but greater questions now remain for me regarding the exact origin of this cancer. To begin with, no documents exist pinpointing where this cancer began. I need to know this information. I need to understand it all, right to its very origin.

But even more important, I need to simply spend more time with Mom. I feel as if I have been led foolishly into this false sense of comfort, where everything seems ok, so therefore it must be. But it's not. And despite the strength and courage she displays every single day, I need to be there for her when she's not so courageous. . . .It's easy to be there at her bedside. To make the appearances in the hospital on a daily basis. And it should be just as easy to spend even more time with her now that she is up and moving and energetic and loving and, well, LIVING.

Please--Call a loved one today. Or tonight. Or, if you absolutely must wait, then tomorrow. Don't wait to make that visit in the hospital. Make it now. Now when both of you can appreciate the time just a little more fully.....

love to all,
Rus

Fear is a waste of time (article by Tony Snow)

2005-09-16T17:50:00.000-05:00

Enjoy reading. This was published at www.townhall.com on 9/16/05

Love to all,
Rus

Fear is a waste of time
Tony Snow

September 16, 2005
WASHINGTON, D.C. -- My doctor has tried manfully over the years to talk seriously about important health matters, usually with mixed success. But he really grabbed my attention when he called just before Valentine's Day and said two little words.

"It's cancer."

People respond in different ways to such news. My first reaction was to think it was cool, in a bizarre way -- as if I had been inducted into a club known not just for its danger and darkness, but also for promising survivors something precious and rare: a fuller glimpse of life itself.

That feeling didn't last long. Within hours, the novelty dissolved and panic set in. My wife and I lay numbly in bed, fretting about what might be. A neighborhood friend had died of cancer only weeks before, leaving behind young children. We both thought, "What if ... ?"

Meanwhile, I felt pings and pangs in every conceivable organ and extremity. I interpreted transitory pains as evidence that micro-tumors had begun spreading wildly throughout my body and were attacking with fiendish efficiency. At one point, I mistook normal, allergy-related sinus pain for a brain tumor.

Fortunately, this panic didn't last long, either -- mainly because I received a very important visit from a friend. She came over to our house, armed with books and advice. Lounging on the couch, she talked about how she survived simultaneous cancers of the breast, lungs and lymph nodes.

There's nothing quite like a pep talk from a cancer survivor, especially one who by normal calculations ought to have died long ago.

Here is the most important thing she said: "When I was sick, my husband and I would sit in a group with other women who had the same thing. We sat in a circle, the same people each week.

"Some looked strong and vigorous; others were pale and weak. But none of that mattered. We discovered that we could figure out who was going to live and who would die just by looking into their eyes. The ones who were afraid didn't make it. The ones who were pessimistic didn't make it. The women who made it were the ones who wanted to live, and were ready to fight. Some of the big, strong women weren't ready to fight."

From that moment on, I haven't felt a pang of fear or trepidation. My friend inspired me to stop acting like a passive nut-job, performing diagnoses based on toe twinges and random gas pains, and to get moving. Suddenly, I couldn't wait to enter the hospital, where a terrific surgeon removed my colon, and then to undertake a six-month course of chemotherapy, complete with annoying side-effects and days of dreary exhaustion.

And so I did.

Winston Churchill once noted that there is nothing quite so thrilling as being shot at without effect. One can say much the same thing of grappling with cancer, with one difference: When a bullet passes, you know it. When cancer passes, you have to wait at least five years to mop your brow in relief.

Still, the last few months -- my time of surgery and chemo -- have been the happiest and most thrilling of my life. They have confirmed lessons that seem at once too good to be true, and too important and vital not to be.

Here is a short inventory:

Faith matters. Prayers heal. Love overcomes.

People want to do good for others; they just need excuses.

Fear is a waste of time. The worst that can happen is that we'll die -- which happens to everybody, anyway. Until the Grim Reaper comes knocking, we're alive.

We can count our hardships, but not our blessings.

Life does not revolve around us. It envelops us.

There is no condition that someone else has not already overcome.

Nothing makes one feel more alive than the prospect of death and the requirement that one fight for the things that give life its richness, meaning and joy.

Seven months into my little adventure, I love my wife and children more than ever; relish my work more than I could have imagined; and feel joy that I cannot begin to describe. I also have some street credibility when it comes to counseling cancer patients. I now can do what my friend did: Dispense a little advice and encouragement, so someone else can replace fear with hope and anxiety with determination.

Which leads to the final healing lesson. When you find a good thing, don't be selfish. Pass it on. You'll feel better -- and so will someone you love.

Tony Snow is the host of the 'Tony Snow Show' on Fox News Radio.

When the light hits just right...

2005-09-15T21:44:00.000-05:00

15 September 2005

Greetings, all:

Mom goes in for Treatment 12 tomorrow. Keep your fingers crossed and your prayers ongoing that she will be able to get this one in. If so, she gets a week off, then she has her final four treatments before her cancer is re-evaluated....

Of course, we are all hoping for amazing, wonderful news. but my concern is that, anything short of such wondrous news, mom will feel very disappointed that the treatments will have to continue, and she needs to stay up. Stay focused on fighting this....She's shocked me so many times with her unbelievable determination to "lick it" as she stated just minutes after hearing that she had 3 weeks to live without treatment. I guess I should remember that this time won't be any different for her. It's who she is--it's what's in her. It's simply her nature to move on and fight it even harder in the next round of Chemo treatments....

And I. I need to stay focused too. Be strong, there for her, a rock of support and love. I can't be swayed by the many negatives that swirl around me on a daily basis.

And....as a wonderful friend pointed out to me today, I need to hang on to the rope, climb it one hand over one hand and not worry about everything at the bottom. Just keep climbing, and you will see the light.

Today, the light hit just right. A car repair, good music with a friend, everything. So I'm staying in the light. Staying where I get constantly recharged. . . . .

Love to all,
~rus : )

Treatment 11 Goes Smoothly

2005-09-11T13:20:00.000-05:00

11 September 2005

And on this day, we first--FIRST remember those who lost their lives on September 11, 2001. All else pales on this date, now and forever.

9/11: We Will Never Forget.

Mom received her 11th treatment on Friday with no problems at all. The Port-A-Cath has been a Godsend to her, and she is so relieved with how easy it is now to get her treatments....We are all relieved, and we cannot wait for her to receive these final five treatments before she gets retested to see how effective the treatments have been in annhilating the cancer.

But we already know this: She has lived so fully since her diagnosis in May, and if nothing else, these treatments have given her that extended lease to live and love so much more richly....

:)

I was reading over my journal entries from a year ago. How desperate those words seemed to embrace life more fully, to not let the minutes fall by without catching at least a few grains of sensational seconds--Love them all--as many as is possible. As many as your hands, your heart can hold on to. But we sometimes hold on too long to those memories of pain, of sadness. Please don't hold on to those too long, for new seconds continue to fall, and they need to be cherished.

That's the challenge when we hold on to the painful past a little too long, isn't it? Those grains of memories that we hold on to take up precious space and force those new miraculous moments to slide on down, fall away, never to be captured.

May we hold on to those moments that bring us great joy, for they attract even greater moments yet to come. . . .

Here's to making your day sensational, one second at a time.

Much to take in

2005-09-03T23:44:00.000-05:00

4 September 2005
12:44 a.m.

Greetings, friends.
It has been an overwhelming few weeks, and my apologies for not posting. As far as Blog etiquette goes, I think I am not very considerate of the folks who stop by daily, or even weekly, looking for some updated news. Thanks to all of you who have sent me emails of concern. Things are, for the most part, good.

Just a brief update. It's very late, though, and I want to post something a little happier later today.

Mom just received Treatment 10 on Friday, 2 September. Last week, she had a Port-A-Cath inserted surgically into her chest so that she could receive her therapy directly through that catheter. She also gets all of her bloodwork done through the PAC as well. The procedure to have it placed into her chest was not nearly as bad as the anxiety leading up to the outpatient operation. Certainly, that is understandable with everything she has been through. But on Friday, when she went in for her treatment, the residual anxiety was quickly washed away for good when she expressed to them just how nervous she was to receive the treatment through the PAC.

"I'm a little anxious," she told the nurse. "So please just let me know when you get ready to start therapy."

"Honey," the nurse replied. "That happened a few minutes ago. And you are doing fantastic..."

Just like that, all anxieties melted away, and Mom could final relax. In just a few hours, she'd be done with Treatment no. 10.

I saw her earlier today, and she gave me a copy of her medical records since May 6th, when all of this started. Before I get into the report, though, you have to know just how amazing Mom continues to look. The aging process continues to spin in reverse; her energy level continues to rise, and her attitude is strong, confident, embracing all that is good, all that is love.

Her report, though, tells me in grim black and white just how severe the cancer is. The full body scan she received on May 16th revealed full-blown bone cancer that is just devastating to even ponder.

The two simply don't match in my mind. How can somebody this sick be this alive?

I have had my share of troubles recently, and I don't know how she does it. I gather so much strength from her, so much love. And still here I am, half her age, frozen to the face, unable to let go and free fall into life and embrace it fully.

This is my mantra: The secret of life is enjoying the passage of time. She's got the secret down that I keep repeating in my mind, in my heart, but for some reason I just cannot embrace it as my own. Even with my own tests still inconclusive, something keeps me clinging, fearing the free fall.....

More later today. I am happy to be writing again here, and thanks to all who continue to peak in every once in a while.

Love to all,
Rus

Mom Conquers Kohl's!

2005-08-14T19:42:00.000-05:00

Isn't she beautiful? Full story to come, but this is one of those pictures that tells its own story!

Treatments 8 and 9...

2005-08-13T20:05:00.000-05:00

Saturday, 13 August 2005

...did not occur. We're in a tough stretch, folks. If it wasn't for Kohl's opening tomorrow, I'm afraid Mom's morale would be dangerously low. And yet, Kohl's is opening tomorrow, and she has called nearly daily for the last week to talk about it, simply tickled at the inevitability of the event.

Treatment 8 was supposed to occur Friday, August 5, but Mom's WBC counts were bottoming out at 1.0. They sent her home with no real instructions to improve her WBC count (besides medication, what can she do?), and so she focused on her next treatment, August 12—both my son's first birthday and only 48 hours from Kohl's opening its doors for the first time in Lutherville, MD.

Yesterday morning she arrived right on time to receive her treatment, and she waited anxiously for the results of her WBC count.

"Congratulations, Eileen. They're not great. Under 3.0, but they'll do."

She was relieved, perhaps even a little excited about receiving another treatment (Rus, I just want to take this medicine to kill this cancer in me so I can live, she keeps telling me).

Just a quick trip to the bathroom, and treatment 8 would officially begin.

Trouble is, she never made it to the bathroom.

Just as she was reaching for the door, she collapsed and lost consciousness. The next thing she knew, she was back on a gurney with faces all around her. They rushed her down the hall to the emergency room, and the battery of tests began.

More CT scans, more X-rays, more blood tests. But all negative.

Puzzled, the doctors had no choice but to release her just after 5 p.m. I caught up with her on her cell phone when she was on the beltway heading back home.

The frustration, even anger was coming through clearly.

"Nothing's going to stop me from getting to Kohl's on Sunday," she said. I pictured her gripping the phone with white knuckles while sitting in the passenger seat.

"You're not driving, are you, Mom?" I had to ask. I had a responsibility to look out for the other drivers on the beltway. It wasn't her fainting I was worried about; it was her road rage.

But she laughed, and I heard Mom's lighthearted attitude return. "Of course not! Charlie's here with me."

And then a long pause. I knew what she thinking.

"He's always with you, Mom."

She managed to push out a "Yes, he is" before another long pause.

"Look ahead to Sunday, Mom. You've got a lot to look forward to."

And she does. Long after Sunday's visit to Kohl's comes and goes.

Kohl's Announces Opening Day

2005-08-03T07:21:00.000-05:00

3 August 2005

That's right: Sunday, August 14, 2005 is the day Mom has been anticipating for nearly two years!

It's a miracle to look back to those days in May when Mom was in the hospital, and we wondered if she would make it to this occasion. For so many months, Mom has waited for Kohl's to open in Timonium, and at one point, it was her focus, her goal, to live to see the day when she could walk through those doors to shop.

I know it sounds crazy, but it's what she loves to do. Mom is a shopper, and she enjoys the experience of going with family and friends even more than she enjoys spending money.

So it's a date: On that Sunday, you can bet that we'll be there with Mom.
And to every other shopper, she will be just another lady curious to see what Kohl's has to offer to this suburban community. But to us, it will be a goal achieved in knowing that she has beaten this disease for at least 68 days, and if she can reach this mark, there's no reason to believe that she won't reach her 80th birthday. After all, it's only 282 days away.

Pray we will for her. Indeed!

* * * * * * * * * * * * * * * *
Treatments completed to date: 7 of 16
Days since receiving the news that she has "2-3 weeks without treatment": 78
Days since receiving her first treatment: 75
Days that have passed post-nontreatment life expectancy (blessed are these days...): 57
Days until Kohl's opens: 11
Days until 80th birthday: 282

Treatment 7's in the Books

2005-08-02T10:08:00.000-05:00

2 August 2005

Last Friday, 29 July, Mom had her seventh treatment. This time, no trouble finding those veins, as she drank plenty of water in the days that led up to her weekly visit...Nine treatments to go until a full-blown check-up to see what kind of an effect the chemotherapy is having.

I will tell you this: Regardless of the effect it may be having on her cancer, it is certainly doing wonderful things for her will to live.

I recently had several tests run myself, and the experience was life-changing. As close as I have been to Mom's battle with cancer, it is not my battle for my life; instead, I play a different role as the supporter. It's a different thing entirely to be the one who is actually fighting the illness.

My tests centered on the mysterious appearance of bruising in my lower legs, especially my right leg. I thought that it was merely weight-related, so I have spent the last five weeks avoiding the foods that I thought might be contributing to the swelling: fast food, any foods consumed after dinner, etc. I didn't regulate my salt intake, however. Despite losing 10 pounds in those five weeks, there was no change at all in the bruising and swelling in my legs. I decided that I needed to see my doctor—something I really should have done five weeks ago.

Obviously, he was concerned. The threat of DVT (deep vein thrombosis, or blood clots) was significant, and he immediately ordered a battery of tests that has included ultrasounds of my legs, chest, and abdomen, a CT scan of my chest, X-rays of my chest and sinuses, and complete and exhaustive blood work. With each test, I've had to wait to see the results.

"I need to explain something very important to you," said, Stacy, my tech for the CT scan. She shared what all of the other techs had explained. "You are here to see if there is any indication of a pulmonary embolism..." (other techs focused on an abdominal aortic aneurism and blood clots in the lower legs). "If we believe there is a significant sign of such an embolism, you will not be allowed to leave. Instead, we will dispatch for an ambulance, and you will be taken immediately to the hospital. If not, the result may very well be death."

For all three tests (legs, abdominal, and chest), I was allowed to leave the radiologist on my own. In other words, these three tests are negative enough that no urgent action needs to be taken. I have yet to hear from my doctor for his analysis of what the tests did reveal, however, and until that time comes (including the results from my blood work), I will remain cautiously optimistic.

Even if he gives me a relatively clean bill of health, the life-change has happened.

I was in the room when my brother told my mother she had 2-3 weeks to live, and I wept. But I was able to leave and head home, wonder what was for dinner, and not ponder my own life expectancy too directly. Sure, you analyze the way you live your life, and you make a few changes here or there, but it's still not your diagnosis. You have room to rationalize, cheat a little, and convince yourself that, well, whatever you do, no matter how minimal it may be, is better than what you were doing, right?

"...the result may very well death."

When that tech or doctor or nurse is looking into your eyes, is talking about your heart or lungs or legs, you listen differently. You sit up a little taller, listen a little more attentively. Your children's lives flash before you—a movie of their births, where they are now, where you expect them to be at other milestones in their lives: graduations, marriages, birthdays. And you imagine yourself in two ways: with and without them.

Change your ways....and the result may very well be life.

* * * * * * * * * * * * * * * * * * * * * * * * * * *
Days since receiving the news that she has "2-3 weeks without treatment": 77
Days since receiving her first treatment: 74
Days that have passed post-nontreatment life expectancy (blessed are these days...): 56
Days until 80th birthday: 283

But I Thought It Was What Was Inside That Mattered the Most...

2005-07-23T14:18:00.000-05:00

After three weeks of being denied treatments because of low white-then red-then white again blood cell counts, Mom resumed her treatment schedule: number 6 in a series of 16 before her doctor runs that series of tests to do the all-important before-and-after analysis. She's excited, encouraged, determined to hear good news....news that perhaps she may be able to stop treatments altogether. Indeed, that would be nice. Miraculous, really. Me? I'm hoping for any sign of this thing inside her shrinking. I don't care how much. Just getting a little smaller so I can say that the treatments are doing more than just buying her status-quo time; they are buying her some quality living time beyond that original prognosis of having just a few weeks left if it went untreated.

So I am thankful that she is still so vibrant, alive—determined to live at least one day beyond her 80th birthday next May. More on that in a later blog post, though.

I need to focus tonight on this whole tricky illusion that, just because you look great and sound wonderful, there's a monster running through you that is taking your life away, cell be cell. It's what I can't get out of my head tonight.

Earlier this week, my sister came up from Florida with her younger son to spend a few days with Mom. Not a moment was wasted; no matter how tired, Mom saw the possibility in every passing hour to do something more, something different with them—all events that each of them could store away to reflect on in coming days and years. There was a purpose for their visit, and everybody knew it. To waste even a single second of that purpose would have been negligent of the chance to do just one more thing, give just one more bit of advice, share just one more hug.

Four of those five days they were in town, I was able to join them for various activities, and each time I saw Mom, I could not help but see such youth, such beauty. Because she has genuinely approached having cancer as being given a new lease on life to view it so richly (and that was hard to do, as she was already getting the most out of life that anyone thought possible), she simply looks phenomenal: smiling, dramatic with her speech and gestures, so very attentive while listening to anything you have to say. . .the list goes on and on.

She has become one of those few people that shock the daylights out of you when you learn how sick they really are. To look at her (and get beyond the fact that she has lost all of her hair), having cancer coursing through her body seems implausible, maybe even irrational. You just can't, and don't want to, believe it. You've been told all your life that it's what's inside that counts, but what if what's inside is killing you, cell by cell?

My family and I headed east earlier today to visit the fairly new Chesapeake Bay Foundation headquarters in Bay Ridge, just outside of Annapolis. It is an amazing complex that is so environmentally friendly, they have composting toilets and filtered rain water for their sinks. For those reasons alone, it was worth the hour-long trip fighting the terribly annoying (but typical) Friday afternoon mad dash of traffic all headed to Ocean City for the weekend.

After we toured the facility (as much as we could—it is meant to be more of an office building than a tourist attraction), we were granted permission to walk along their private Chesapeake Bay beach. After weaving through wooden ramps and hopping along the Foundation's main dock (where my girls saw their first live jellyfish, ever-bright white, streaming in and out of the dock pilings), the girls led the way toward the shore, kicking sand along the way as they ran toward the calm waters.

I was here at the Foundation for another reason. I'm working on a book right now that chronicles my mother's battle with cancer with what is known as the "dead zone" in the bay: an ever-growing area underwater that is deprived of oxygen, thus killing millions of fish, crabs, and oysters during the mid-summer months. I needed to get some more information beyond what the Foundation's press releases were telling me; I needed to just immerse myself into the Bay and learn all that I could in these next few months.

So why not start today?

As the girls ran toward the edge where the water kisses the sand with such devotion and unwavering commitment, I stayed back for a few minutes just to savor all of what was before me: it doesn't get any better than this, I thought.

I could see the energy, the enthusiasm they released as they reached the beach. First on the to-do list: Get feet wet, good and wet. Second, bend at the waist (or sweep your feet, one at a time, in front of you) and find shells, lots of pretty shells, to put into a bag and take home to clean and catalogue and, and, and just enjoy.

As I looked at them, then over their little heads and across the water, I saw nothing but beauty. The mighty Chesapeake! Strong, fluid, resilient, nourishing. Giver of life, Provider to all. Able to handle years and years of wear and tear. And on the outside, Chessie looks stronger than ever.

But she's not. The heavy rains in spring sent high amounts of pollutants, including fertilizers, directly into the Bay, fueling algae blooms that use up all of the oxygen and create an unsustainable environment for the fish, crab, and oyster populations.

My kids don't know it. Most of the people sailing on the bay don't know it. Even many of the fishermen who get up every morning at 4 a.m. know only that the fish aren't biting here right now and so it might be best to move over there. . . .And they do. But what they are doing is simply finding a pocket in the bay that hasn't been deprived of oxygen and doing what they can to get by.

Like all of us with Mom.

We do what we can to get by, and we look at her, that beauty, that energy, and we think to ourselves: How can such a devastating thing like cancer be growing inside this wonderful being?

I know, but I also believe that, if I can find out how to fix the Bay, maybe I'll figure out how to fix Cancer too....Stay tuned. I've just begun my research for this book. May Mom live long enough to see it on the shelves of Barnes and Noble. . . .

Mom and the Rheingold Girl

2005-07-11T14:09:00.000-05:00

The other day on the phone, mom and I were talking about the importance of sharing good news with others. According to the Philosophy of Mom, be genuine about how you feel about others, and never hesitate to share with them what will certainly brighten their day.

Or in mom's case, a lifetime.

Mom grew up in the shadow of her older sister. All she ever heard was Lorraine this, Lorraine that, and it seemed that everybody wondered why she couldn't be just like Lorraine. The simple answer is, of course, because she wasn't Lorraine. She was Eileen, beautiful Eileen who had a smile that would light up New York. Her grandfather, she told me, was quite special, and he always had something nice to say about her when he would visit. One time in particular, he told her that she looked as beautiful as the model for Rheingold Beer, who graced the billboards all over New York.

(see two such billboards here: http://www.realbeer.com/news/articles/news-001840.php)

This is what she remembers most from her childhood, those rare occasions when she was seen and loved for who she was and not how she fared next to her older sister. He made her feel special, beautiful, one-of-a-kind. She was and still is all of those things, but she remembers feeling it most when he would say it to her, with such genuine love and heartfelt respect.

Just imagine: driving through new york, seeing those billboards of the Rheingold Girl, and thinking: "wow...somebody actually thinks I am as beautiful as she is...."

It's not too late to let somebody--anybody know that they're pretty wonderful. Drop them a line, a note, a call, an Instant Message, for goodness sake, and just say what you'd like to say, and with no expectations. My great grandfather did not ask for anything for his kindness. It was genuine, and maybe that's why she still remembers it nearly 65 years later.

Make it a genuine day and let someone know she looks great, or he did a great job, or they turned your day around. But do it for real, and do make it a genuine day for yourself as well as for others. . . .

July 9 Update, Part Two

2005-07-09T23:19:00.000-05:00

If you haven't already read the update titled Part One, please do so. It contains information specific to Mom's health. Part Two focuses on my struggles with her illness. Please, though: read first about her if you have not yet done so. Thanks.

I deleted the Daffodil Quill early on the morning of Monday, June 27, 2005, With it I also deleted my other fledgling blog titled The Love Bug Cafe, not to mention hundreds of emails from friends and several important works of my own writing. I had clearly reached a breaking point, and I was using the power of the delete key to cope with my frustration and anger.

If you don't know me too well, maybe then you don't know that I am, for the most part, a catcher in the rye. I could relate all too well to Holden Caulfield when he spoke of that desire in him to protect and save those from losing innocence. But I have added a few people in my rye field that I feel a need to protect and save: those who might be in harm's way, those who have been dealt bad news regarding their health, and those who have been wronged by others. It is a terribly frustrating thing for me when I can't put on my big catcher's mitt and help out, keep them from going over the cliff, turn them around and send them back to innocence, to good health, or to happier people who will respect them for who they are.

I'm not sure which is worse: Losing control or realizing that you have no control over a certain situation. I imagine that with the former, you can regain control, take responsibility for your actions, and move on as best as possible. But for the latter, it seems closer to impossible to just let go, take off the catcher's mitt, and watch them go over the cliff. Some of them go willingly, others blindly, and still others fighting for life, clinging to thread-thin roots at the cliff's edge, begging for an outstretched hand to allow them just another minute, maybe even less, before facing the inevitable fall.

This is where I found myself early on that morning. Many aspects of my life were in deep transition, and for reasons that need not be outlined here, I took off the mitt at about 5:07 a.m. and vowed to never put it back on again.

That day, June 27, was one of the roughest of my life. On the first day of a five-week course I am teaching at a local university, I had to find the courage, the strength, to push all of that away from the part of my brain that wants to feed on it, dwell, beat it till it's dead and then follow with one last swift kick for good measure. And I was successful. The first day of our course went without a hitch, and only one of my colleagues noticed that I was clearly not myself. To the other five colleagues teaching with me and the 27 students (we are all together from 8 a.m. until 3 p.m., four days a week) just beginning the course, I was on top of my game.

The rush of emotions was unbearable. The pressures of Mom's illness, the start of a new course, my own health issues related to my weight—it all reached a peak on that day, and I felt myself crash, crash to a place I did not know existed within me. Gone were the usual lifelines that I have had to grab on to in such critical moments. Gone were the internal and external reminders that this, too, shall pass. All gone.

But were they really?

Of course not. They were still there, stronger than ever. But coming to terms with Cancer and its ugliness—in facets never before imagined—hits you dead on in a way in which you can never prepare. You can read books, join support groups (both online and in person), and lean on other friends and family, but when you really face it, really look into its death eyes and feel the cold grip it places on you, nothing prepares you for the simple reality that you are not in control to stop this loved one from going over the cliff.

So, to my friends who have been following the daffodil quill and my own mother's journey, please let me apologize for being so selfish. As so many of you have expressed to me personally, this is a place for you as well to cope, to come face-to-face with the tragedies in your own lives, and hopefully find some solace and closure. It is a place for loved ones to be informed of Mom's condition. It is a place for strangers to stop by and see how one great person, Mom, is doing everything she can to get the most out of her remaining days on this Earth. It is a place to learn, to live, to love, to hug, to share, to move on.

I'm sticking with the site now until the very end with Mom. Who knows? I hope to be writing entries to this blog for many, many years to come. It is the least I can do to feel, at least in some small way, that I can slip the mitt on again, and stand there at the ready, just in case.

love to all, in all ways,
rus :)

July 9 Update, Part One

2005-07-09T21:11:00.000-05:00

My apologies. Technical difficulties with computers, not to mention life, made posting a little challenging. I will explain more in Part Two of my July 9 update. First, I have a lot to share about mom.

I can't even remember where I last left you regarding her condition, her spirit. The good news is that the latter is still strong. I wish I could say the same about the former.

Let's begin with the good. My brother Jim and I continue to marvel at her unbelievable spirit and courage through all that she is facing. Terry Tempest Williams, in her book Refuge, which is about struggling with her mother's battle with cancer, wrote that the procedures and the rituals are not for the dying but for the living. It is we, the survivors, who find it hardest to grasp the reality of terminal illness. I've realized that, for me, this is very true.

Mom's done several things to make herself feel good. First, she visited the Cancer Center in White Marsh, MD, and they set her up with two amazing wigs that make her look 10 years younger. She feels wonderful in them, and they make her look so healthy.

She's also able to travel a bit without the oxygen. Today she is in Pennsylvania for a wedding; last week, she spent some time in Delaware at the casinos. Next week? Who knows...wherever the spirit takes her, I believe, and she won't hesitate to go and get the most out of every minute.

That's not to say there haven't been setbacks—there have.

First, she is really struggling to keep both her red and white blood cell counts high enough to get timely chemo treatments. She has missed four treatments now because of low numbers, and if she can't get her red blood cell count up soon, she's going to need a blood transfusion.

Second, she had a real setback last weekend. We were scheduled to stop by and see her on July 4, and I called her that morning to confirm what time we'd be coming over. She sounded wonderful, eager to see the kids again. We hung up, and within 90 minutes, her partner (Charlie) called to tell me that she is having chest pains, and he doesn't know what to do because it is a holiday, and he figures the doctors won't be available. I advised him to hang up immediately and call 911. He did call, and in fewer than three minutes, they were there with mom (it really pays to live right next to the firehouse!). They gave her a nitro spray under the tongue, and almost instantly the pains subsided. Still, they decided to take her to Franklin Square Hospital as a precautionary measure. My brother Jim and I were with her within the hour.

All of her tests were coming back negative, but they decided to keep her overnight anyway. Now, I don't think I need to tell you how damaging this might have been to her spirit. And don't get me wrong—she was clearly saddened and disappointed at the news that she was going to have to spend the evening at Franklin Square, but she made the best of it.

"Oh, Rus. You just wouldn't believe how much better the food is here. They even put your dishes on a little doily and make it all so very pretty. What a difference from St. Joseph's!"

Clearly, she was looking for some silver lining, and she found it.

She was released late the next day, Tuesday evening. The doctors at Franklin Square said they "absolutely hated" her being there with the condition she was in, and so they scheduled her CAT scan to be done as an outpatient in the next two weeks. The combination of the low white blood cell count and the high number of germs in the hospital could have very well been a fatal combination. We were all happy to hear her voice from her own living room when we called her that night. And, you could hear it in her voice as well: relief.

Then just yesterday (Friday), she went to receive her next treatment, but her white blood cell count was just too low. No treatments for three weeks. Her oncologist was surprised to hear that she had been in the hospital, and he gently lectured Mom to make sure that he is notified immediately, should she find it necessary to go to the hospital for any reason. In Mom's words, her doctor placed his hand gently on her cheek and said, "I need to know what is going on every single day for the rest of your life if it is out of the ordinary." That's the kind of doctor I want treating her, and I am thankful for his compassionate but aggressive way in letting her know that it is not an automatic procedure for a hospital to alert him, should she be admitted again.

Yesterday afternoon, Mom and Charlie stopped by the house. They were out looking for a gift for the wedding in Pennsylvania, and she wanted to drop off Holland's (my oldest daughter) belated birthday gift. Mom looked great. Instead of her wig she was wearing her knit white cap (it's just been too hot to wear the wigs, she says), and she was filled with smiles and hugs for my three children. She's lost so much color in her skin, though, and the contrast between her strong will and ceaseless energy with what we all know is running mercilessly throughout her system still rips me apart.

This is what I will get into in part two of this July 9 Update, which I will post shortly.

love to all, in all ways, rus :)

back on line

2005-07-09T08:49:00.000-05:00

all:

my apologies for the technical difficulties...

I am back on line, and so is the Quill. I will be back shortly with an update. There is so much to say...

and thank you, all, for your support while i was offline. You know who you are.

:)
rus

archived log from the first daffodil quill

2005-06-27T23:14:00.000-05:00

Greetings, all: It is actually 23 July 2005...

I have many of the original posts from the first daffodil quill, which I deleted 27 June 2005. Here they are, in somewhat raw form, as I wroter them. This should provide the necessary background for any newcomers to the daffodil quill...

rvw :)

My Story
entry 00.001
I am one of the lucky ones.
Cancer has yet to touch me directly, but it has struck my sister, and now it strikes my mother. My sister was diagnosed with non-Hodgkins Lymphoma in April 1990, and because I was single and a teacher with summers off, I was fortunate enough to be able to live with her and her family during her chemotherapy treatments as she battled her cancer aggressively. I remember vividly that day when she returned from her appointment with the oncologist, and she was so angry. She hated him because he was not sensitive. He did not tell her that he felt sorry for her. He did not hold her hand and tell her that it was going to be all right.

Instead, he told her that it was his job to do none of those things. His only job was to kill the cancer so that she might live. That was it. Treatment would be aggressive. Overkill. But that was his style. He had no interest in thinking the cancer would work with him, run scared from a lighter treatment. He believed that cancer makes its stand until the last cell is annihilated.

And annihilate them he did.

I just drove my sister to the airport yesterday. She and her older son were in town from Florida. About 2 hours before we left for Baltimore-Washington International, our mother listened to her doctor explain how widespread the cancer was throughout her system: lungs, check; heart, check; breast, check; lymph nodes, systemic. Dr. Abrahms was having this discussion with her in the ICU at St. Joseph’s Medical Center, where she had just been moved after going into cardiac arrest across the hallway in room 405A. She arrived 48 hours earlier to remove 1.5 pints of fluid in the pericardial sac around her heart.

In light of her condition, Dr. Abrahms believed it necessary to have her wishes known should she again experience heart or respiratory failure.

“I don’t want to die,” she cried. “But I don’t want to end up like my sister.”

Here’s the short background on her sister, Lorraine. Last year, she entered St. Joseph’s Medical Center days before her 79th birthday for a heart procedure. She was never discharged. Months later, they removed her from life support, and she died hours later. Mom was with her nearly every day during the ordeal. Toward the end of Lorraine’s own tragic death, her husband and niece were in a horrific car accident that resulted in his eventual death a short time after Lorraine passed. Mom watched Lorraine suffer day after day, and she made it very clear that she never wanted such measures to be taken to sustain her life.

Mom turns 79 this week. Goes in Friday for a heart procedure, terrified that she will die without ever being discharged. Learns she has full-blown cancer. Codes. Signs the DNR papers.

All we can do is pray that she makes it home. The doctors hope to release her from the ICU on Tuesday, then discharge her from the hospital entirely after inserting a pacemaker.

But I have to tell you, sisters will be sisters. It is almost as if the older Lorraine is doing everything she can to keep her kid sister from getting discharged. Why, after all, should Eileen be allowed to leave when she never got the chance?

So unfair. . . .I hear Lorraine say. So very unfair.

But of course I really do not believe this.

Or do I? Just today, Mom refused prayer from Jane, a member of the clergy who stopped by to clarify some questions about the advanced directives.

“I’ve already had two other people pray for me today,” she offered. “Thank you anyway.”

Mom, I don’t think you realize just how many people are praying for you right now. Even Jane, I believe, left the room with a prayer leaving her lips.

As did I.

Her Goal: Make it to 80

entry 00.002

At 4:17 p.m. today, a nurse named Theresa wheeled Mom out of Room 21 in the ICU at St. Joseph’s Medical Center, zig-zagged through a maze of hallways that wrapped around computer stations filled with busy doctors and nurses monitoring patients and updating their charts, and found her way to the other side of the fourth floor, where Mom will be monitored closely, but not as she had been during these last 57 hours in the ICU.

Yes, Mom got one step closer to coming home on Wednesday, the day before her 79th birthday. The hope and anticipation in her face fought through the fear she had been feeling since she got the news that she had cancer. But even in the struggle to defeat that fear, her hope and anticipation had to settle with a certain co-existence with that fear.

That’s ok. let that Hope, that Anticipation fight hard. Turn that fear into faith and resist no more.

Relax. Enjoy. Love all.

“My goal is to make it to 80,” she said to me before Theresa came in to wheel her back to the other side of the fourth floor.

“Good goal,” I replied. Then we’ll update our goals on the day after and say, ‘the goal is to make it to 81.”

She smiled before letting the fear rise again.

How brave, though. How very brave to lie in that bed with every known needle and IV drilling or hanging from

* * * *

entry 00.004

17 may 2005
It has been a rough 6 days.

Mom turned 79 last Thursday, May 12, and on that day they reinserted a tube into her back to remove more fluids that had accumulated in her lungs. The tube was the size of your pinky finger, and it is no wonder she went from feeling so very fine just minutes before the procedure to spending the next 96 hours not wanting to eat or drink. The pain and the nausea was so bad that she spent most of those four days in and out of sleep, moaning, sometimes vomiting, as she tried her best to manage the pain. Percoset and Fennergan were the main fighters for pain and nausea, respectively, even after she had the tube removed on Saturday morning. In fact, just yesterday (Sunday), she looked so very drained, exhausted, scared, and full of fear to move or do anything that might bring her more pain or—worse—more tests. So we spent the day with her as she drifted in and out, working through the pain, the nausea, but all of us felt so helpless as we could do nothing but watch her go through such hell that was not even fathomable 10 days ago.

All that changed on Monday. Mom felt much better, and she finally got her CT scan (head, abdominal, pelvic) around 2 p.m. We were told the results would come late Monday, early Tuesday.

It was great to see her so alert, her appetite had returned (somewhat), and she was smiling and laughing once again. She even took a short walk down the hall from her room, something she hadn’t done since she was admitted on May 6.

Tuesday was much the same: good attitude, upbeat, and beginning to eat a little. Baby steps in progress is what I kept telling her. You cannot leap in great strides with cancer, and especially at the age of 79. She agreed, smiling, and kept her thoughts on getting discharged as soon as possible.

But then the news came from Dr. Silva, an oncologist at St. Joseph’s. He looked at Mom’s CT scans, and the news he offered was nothing short of grim. Not only was the cancer in her lungs, breast, and lymph node system, it was also in her bones. Without treatment, she would have another 2-3 weeks, maybe a month left. With treatment, she might enjoy another 1-3 years. Of course, there are no guarantees. Only possibilities.

On Tuesday evening, I met my brothers Steve and Jim at the hospital at 7 p.m. (Steve’s wife, Donna, was also with us) so that we could deliver the news to mom. We first met in the lobby of the fourth floor. I thought that we would discuss how to best approach it with Mom, but as soon as Jim arrived, Steve led us in. Mom didn’t seem too surprised to see all of us at once, especially at that late hour. She was beaming. A grin filled her face as Steve sat on her bed. Charlie, Mom’s significant other who has given her much love these last 14 years since Dad passed away in 1989, was there as well. I stood to the left of Steve, Jim to the right, and Donna to the left of me. Gently, but candidly, Steve shared Mom’s prognosis.

It was the moment I had been dreading. Hearing that you have less than a month to live must be catastrophic beyond anything I have ever experienced. When Steve told her what would happen without treatment, the smile dissolved into fear.

“Aw, come on,” was all she could say.

Then Steve offered the prognosis with treatment. Immediately she picked up.

“I don’t know if I’ve ruined your night or if you are okay,” Steve said.

And with that, we all looked to Mom, who thrust her chin into the air, brought her eyebrows deep into the tops of her eyes, and said firmly: “I am going to lick it.”

We all sighed with some relief. Ok, we thought. We now know what her wishes are. We now know what battle we must prepare for. We now know the corner we have been longing to turn.

But we all know that she is in command, making the decisions. It is her life, and all we can do is help her steer as peacefully as possible in the direction she chooses. We are merely chauffeurs, and no matter how hard we may try to believe that we know what is best for her, we must abide by her wishes and stand resolutely by her side.

It is the least we can do.

entry 00.005
My apologies for not writing daily. This is a tough routine that is a little different the second time around (I do not use the term “little” lightly here; given the experience and wisdom gained of the last 15 years, I think that “little” is a relative term for such matters).

Fifteen years ago when I helped my sister Cindy through her battle with cancer, I was single. I had no commitments, do dependents, and I came and went as I pleased, when I pleased, how I pleased. She needed me for the summer to take her to treatments and help with her two young boys? Not a problem. Her husband had no choice but to continue on with his job that took him away from home on occasion, and Cindy needed somebody there for support. As a teacher, I found no problem in helping her through such a difficult and terrifying experience.

But now, I am not single. I am married with three children ranging in ages from nearly 9 years to 9 months. They are challenging in their respective rights, and I do not feel any anger or even frustration in not being able to be there for Mom like I was able to be there for Cindy. Times change, and the reality of THIS situation is that I can’t just abandon my family, move in with my mother, and act as if I am 25 again.

Thus…..life becomes a balancing act, but one that I take very seriously. So I thank you for your patience. I hope to write nearly every day, even when there is nothing really new to report on Mom. On those days, I will be sharing new information I am learning from other readers, offer inspiration and support, and share my views on topics relevant to cancer specifically and the healthcare industry generally. More than anything, though, you will read in these posts time and time again a real love for life, a real devotion to spirituality, and an unwavering devotion to love itself. May all of my readers know what love truly is.

Ok. On to the updates. Mom began treatment Friday, May 20, at about 8 p.m. Her last treatment for that night ended at about 12:10 a.m. that Saturday morning. The two chemicals they are using to combat this cancer (adenocarcinoma) are Doxorubicin (brand name, Adriamycin) and Docetaxel (brand name, Taxotere). And…in preparation for taking the Docetaxel, they gave Mom decadron (dexamethasone). It looks like she will be having 6 treatments every 3 weeks, for a total of 18-26 weeks of therapy. Every 3 months, she will receive CT scans to check the progress of the therapy. She may also receive hormonal treatments after therapy for the breast cancer. Finally, every 4 weeks, she will be given other drugs to strengthen her bones.

When I saw her Saturday night (5/21), she was very tired and nauseated. At about 5:15 p.m., the waves of nausea began, and they continued through my stay and well into the night.

My visit with her tonight (5/22) confirmed that she’s well on her way to actually coming home on Monday. When I arrived at 5:30 p.m., she was sleeping. I slipped into the room, sat in the chair next to her bed, and held her hand. It was hard to read her face as she slept. What kind of night did she have? What news would she share with me when she opened her eyes? Were her hopes of coming home stolen from her once again because of still more problems?

She awoke within a few seconds, and a smile immediately filled her face. She did sleep well. It was a surprise to her that when she woke up this morning, she was wearing an oxygen mask because her numbers had dropped well below where they needed to be. Still, her doctors are confident that she will be able to come home on Monday, 5/23.

She just can’t wait to get home. And we can’t wait for her to get home.

I asked her what she was going to do first. She looked dreamy with eyes closed and a half-smile.

“Oh, I cannot wait to wear my own clothes. Sit on the couch. Do my puzzles.” She opened her eyes and turned to me. “You know, all the little things that now don’t seem so little.”

I do know. Indeed, “little,” after all, is a relative term for both this writer and his mother.

May it be for you as well.

** ** ** ** ** **

Home Sweet Home

entry 00.006
Monday, 23 May 2005
On the 17th morning of waking in a hospital bed at St. Joseph’s Medical Center, Mom was able to sit up, look out the window, and know that today was the day she would finally get to go home.

She had been offered possible go-home dates several times during those 17 days, but each one was cut short by various complications that kept her in that bed for another 3 or 4 days. Is it any wonder that she doubted the reality of her finally being able to return home?

Mid-day, Steve said that she was absolutely elated to be discharged, but when I called her room at the hospital a little before 5 p.m., Charlie spoke of her fear, the fright associated with leaving the place that was able to resuscitate you at a moment’s notice. The place that knew just what to do, no matter what happened to you.

I understood. Thinking of her sitting on the edge of that bed, in her own clothes, took me back to June 1996 when we brought our first daughter, Holland, home from the hospital. She was just 3 days old, sleeping the hours away peacefully, assuming that all she needed would be provided to her without condition. Everybody else existed for her, and nobody was to forget that.

We walked through the front door to our small apartment in Cockeysville and placed Holland, sleeping soundly in her car seat, on the floor in front of the sofa. Amy and I took a seat and faced Holland.

She was porcelain. Innocent, safe, and cherished.

And we were scared to death.

Almost on cue, Amy and I hugged each other and cried. What do we do now? We’ve read the manuals, but this is not about changing any stinking diapers. This is about confronting the reality that this small, small baby in front of us is in our charge completely.

No doctors. No nurses. No special machines to make sure all’s well, even when we can’t tell if it is or is not.

Mom had to be feeling the same way. Ecstatic, yes, that she was on her way home. Scared as well, though, that she was on her own, and bouts of nausea or sharp increases in heart rate were her problem now. Doctors and nurses would come, sure. But not at the push of a little red button, and not in 30 seconds.

When I talked to Mom Monday night, she sounded like a kid, all giddy after going on a field trip to who-cares-where.

“The ride home was just great. Looking out the window, seeing everything just a little differently.”

Then she paused. This was tough to handle. The emotion of being where you thought you may never be again is a powerful thing, and since Mom was diagnosed with cancer, I have noticed a strengthening in even the smallest of ways.

Which leads me to this:

When I was sitting next to Mom on Sunday, I brought up the subject about my weight. After telling her that although I knew what to do, I could not find the will power or the strength to just do it and lose the weight.

She offered me some comforting words, and I listened to every word she said. Yes, I had heard it all before, but it was coming from Mom, and now that she was faced with a terminal illness, her words carried more weight; they had more importance—a genuine sense of urgency.

While driving home from the hospital that night, I was stunned with the pathetic irony of that bedside confessional I had just had with Mom. There, next to her in her bed, I whined about not being able to find the strength to lose weight. Five nights earlier, my brothers and I circled around her bed and told her that, if she chose to fight this cancer, she was going to have to find the strength to live and do whatever was necessary to get stronger and prepare for treatments that, undoubtedly, would make her more sick, more nauseated, more exhausted.

She found the strength to live beyond the prognosis of having only weeks remaining here on this earth. It’s the epitome of carpe diem—seize the day—where we must appreciate all we have right now, for we know not when it may all disappear.

Part of me wishes that she would have told me to shut up, get my fat ass in the gym, and not wait for some kind of special invitation to relinquish control of my life to another human being.

Home sweet home? She’s probably sitting on her couch right now, doing a crossword puzzle, and looking out the window.

“Sweet, sweet night,” she might be thinking. And I as well. To be aware of and appreciate the fragility of the passage of time is a sacred gift that, once experienced, erases any concerns for what awaits us on the other side.

May we all seize the day, and may we all return to our home sweet homes as soon as we possibly can.

** ** ** ** ** **
A Different Kind of Treatment

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Mom finished her second treatment at St. Joseph’s last Friday. I called her the night before and she shared her fears: the return of the nausea, the waves of cold rushing through her, the fatigue. We talked about the good things: she was now home, the treatment she was getting was as an outpatient, and she’d be able to come home as soon as she finished receiving the treatment. Although she was still scared when I hung up the phone, I could tell that she was grateful for all that we had talked about.

The next day, I went over to her house after she returned from the hospital, and she looked great. The treatment, she said, was much better than her first when she was still an in-patient at St. Joseph’s. Two other individuals received their treatment at the same time, and the experience, although terrifying in its own right, was manageable for her. Perhaps it was in knowing that she wasn’t alone.

She was also relieved that she knew her schedule for the next few months. She pulled out her little pocket calendar, turned to the month of June, and read the dates for her next visits to St. Joseph’s. After two more successive Friday treatments, she gets a week off. She put the calendar in her lap and smiled.

She had a schedule to tend to. There were appointments to be kept well beyond her original prognosis of having less than a month to live. Why not smile?

Just then she got a look of surprise on her face, as if she had just remembered something important.

“Oh! You’ll never guess who sent me a beautiful card with the most wonderful letter inside!”

She handed me a yellow envelope, and immediately I recognized the handwriting: it was from Sheilah, whom I dated in high school in college. She had become every part of my life, and the relationship she and Mom had was just as special.

“She says the nicest things in that letter. Makes me remember so many good times with her.”

She continued to smile as I read Sheilah’s words. Beautiful, as always.

We’re all busy, and Sheilah’s certainly no exception. Yet she found the time to let her own “second mom” know how important a role she has played in her life—both then and now.

I put her card and letter back into the yellow envelope and returned it to the thick stack of cards of get-well wishes from friends, my brothers and sister, members of Mom’s church. The support is overwhelming, and each letter brings her a different type of treatment, one that no chemical has ever been able to replace.

The treatment of love, care, support.

Since I started the daffodil quill, I’ve received several emails from old pals and new e-friends who have shared their stories, some of which I will be sharing here in subsequent posts. Cancer affects so many more people than we can ever imagine, and so I encourage all of you: even if a catastrophic reason does not exist to reach out to somebody you haven’t talked to in a while, take a moment and write a brief hello. Remind that person that he or she matters to you.

You never know who might just be in need of such a treatment today.

** ** ** ** ** **

Friday’s treatment cancelled

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I called Mom last night to see how she was feeling. I was concerned about this week’s treatment because it was with the chemical (I believe it is the Doxorubicin) that made her so sick during her first treatment. If she followed the same pattern, she’d feel fine until about noon on Saturday.

“I didn’t get my treatment,” she said. “My white blood cell count was too low.”

This is not how it is supposed to work, I thought. She is supposed to get this third treatment, have a week off to let her body recuperate (so I imagine), and begin the cycle all over again the following week.

All I could think was that they told her the treatment wasn’t working and to just go home and enjoy your last days.

I tried not to let my concern seep into my words, but I could hear my own voice tremble as I asked her what this meant to the treatment cycle.

“I’m not sure, but the nurse told me to wash my hands all the time and make sure that I don’t get exposed to germs if I can help it. If I get a fever or feel sick at all, I have to go straight to the hospital.”

She will check in with her visiting nurse on Tuesday (perhaps sooner) and see what she can do to improve her white blood cell count.

I didn’t know what she could do. I don’t know any of this stuff. It is so infuriating that I have no answers, no solutions, no magic pills to make it all better for her. When my own children are sick I can hold them and tell them with confidence that they’ll be okay. But I can’t do that with Mom because this is unchartered territory for us. I don’t know what a low white blood cell count can do at this early stage in treatments for a 79-year-old woman who has cancer in just about every place in her body.

After I hung up the phone I researched low white blood cell counts and cancer on the Internet and learned only that this is a fairly common occurrence because the chemicals do not discriminate in how they attack the cells in the body. From what I understand, the chemicals attack fast-moving cells, and white blood cells fall into this category (or is it that the white blood cells are depleted from trying to fight the cancer and/or the foreign chemicals?).

My Internet search produced more hits for prescription medications than it did for facts, which doesn’t surprise me. Does anybody know of effective medications that might help her get her counts up quickly enough so that she can continue treatment?

Ugh.

I end with this other dilemma. She wants to see our children, and they want to see her. We had a visit planned today, but I cannot, in good faith, take them to see her if they are carrying any germs that might make her sick and further complicate her treatments.

Alex, you are right. This stinks. Nothing about this is good, and it takes every bit of energy and prayer to hold on to hope when things out of your control happen.

Blessings to all,
Rus