Just Call Me....

by Dave

This is weird.  An anomaly.  It just doesn't happen.

Yet it IS.

Almost everyone who reads this blog knows someone who has been through chemo.  It's usually a mixed blessing: you get chemo's cancer-killing benefits, but you also suffer some discomforting side effects that vary in intensity based on the type of chemo to which you're subjected.

But apparently not me...at least not yet.

Here was the majority of my conversation with my doc yesterday; word for word:

Doc: (Feeling my stomach area) I don't need to wait for the CT scan in 2 weeks to be

         able to tell you that your liver has shrunk noticably.  Me: Is that good?

Doc: Yes, absolutely.  Me: Awesome!

Doc: So...how you feeling, tired, huh?  Me: Yeah, especially the last week off chemo.

Doc: What about chemo weeks?  Me: I feel great.

Doc: You feel GREAT on chemo weeks?  Me: Yeah.  Isn't that the whole purpose?

Doc: The purpose of chemo is to kill cancer cells.  Me: Exactly. 

(Doctor tilts head quizzically.)

Doc:  Any nausea?  Me: Very little.  I think I've taken four of the pills.

Doc: This week?  Me: No, total.  (Doc tilts head again.)

Doc: Any vomiting?  Me:  Not since 1991.  (Doc raises eyebrows but doesn't look up.)

Doc: How's your appetite?  Me: Great.

Doc: Any diarheia?  Me: No.

Doc: Constipation? Me: No.

Doc: Any swelling in your feet or ankles?  Me: No.

Doc: How about hair loss.  Me: Not yet.  (He raises his eyebrows again.)

Doc: Any coughing?  Me: No.

Doc: Any sores or burns inside your mouth?  Me: No.

Doc: Mind if I take a look?  Me: Go ahead.

(Doc shines flashlight in my mouth, has me move tongue around.)

Doc: This is quite amazing.  Me: What is?

Doc: It is like you are taking all of the benefits of chemo, but suffering none of the side

         effects.  Me: Isn't that the ideal?

Doc: It is, but you need to understand: the severity, the intensity of your specific chemo

         protocol couldn't be much rougher.  I have never seen anything like this.  How did

         you feel after your very first chemo treatment?  Me: MUCH better.  I felt

         immediate relief from each of my symptoms.  (Doc tilts his head and stares into

         my eyes.)

Doc: Well, you are one in a million...maybe less than that.  I can't explain it.

Me: I can.  I serve an awesome God alongside a number of strong Christian friends who

        have been praying for weeks.  I also have other friends who, through their love and

        compassion keep me encouraged, laughing and focused.

Doc: Well ask them to keep it up.  This is amazing.

Amazing.  Yes, it is.

I've wondered throughout this journey what people without faith in Jesus Christ would do in my situation (and I write this knowing that several readers are not believers - I love you, too).  But there is nothing, NOTHING that tops the power and comfort of the prayers of those who love the Lord.

Yes, I know this high tide is unlikely to last.  But I ALSO know that every chemo treatment that goes like these first thee is killing cancer cells, shrinking my liver, and giving me at least more days or weeks.  And I believe if thinks go this way a while longer that could turn into months - even a year or more.

So I ask you to KEEP PRAYING.  It's working!

In the meantime, I have a new identity: "CHEMO FREAK" (cue Rick James)!

I LOVE you and thank each of you for caring and loving Angela and me through this.

Dave

Dear Mouse,

One of my favorite childhood stories of you is the summer when you claimed one of the desks up at the radio station and wrote out a sign on poster board that proclaimed you: "The Informashun Lady."  Clearly it was a self-imposed title, but it FIT!  Outside of myself, you were the only one up there who knew what was what.  You even served as the Traffic Director - a VERY important job back then - for the whopping salary of $20 (I always wished I had more to pay you back then).  But my inspiration this middle-of-the-night is claiming a title then fulfilling it.

If you can be The Informashun Lady, then I can be the Chemo Freak!

LONG MAY WE REIGN!!!

I love you with everything in me,

Daddy  xxOx

I Know

Dear Daddy,

That's so strange that you wrote about that. I was just thinking yesterday about the emotional weight you must be carrying. That's one of the things that had me so upset. I pictured myself in your shoes. One of the first things that I thought about is how guilty I would feel. Isn't that strange?! I thought I would feel so terrible that John was having to walk me through such a terrible thing. To carry not just the burden of my illness and his own emotions, but also the daily burdens of life that I would no longer be able to carry. It devastated me just picturing it. I will probably fear it for the rest of my life.

There's a song out now by one of my favorite singers, Martina McBride. It's actually about a woman who is diagnosed with cancer. Her husband tells her, "when you're weak, I'll be strong, when you let go, I'll hold on." Nobody can pretend that this is easy- or even that it's not a burden. That's just the truth. But it's not a burden from YOU. I know you know this, but let me remind you. NOBODY blames you. Nobody resents you. We hate cancer, we question God, but we love you. We love you even more every day.

The reality is that none of us knows how our story will end. . until it does. Some people have a story that ends abruptly, and others have a longer ending- an ending about and through which they can write so that maybe those they love can learn and grow from that experience. And who's to say which one if more difficult? We can live our charmed lives and assume that we'll be lucky enough to avoid tragedy, but for many of us, that's just not true. You are not the only one who has felt this way, who has carried this burden. We are not the only ones who have felt this pain. There is nothing I can say to make you feel better, except this: You would do it for us. You wouldn't even think twice about it. You would do it for mom, for me, for the girls, God forbid. We are doing for you not only what God asks of us, but merely what we know you would do for us. You have taken care of us our entire lives, now let us take care of you. And stop apologizing.

"I'm Sorry"

(Written by Dave)

I won't lie, it's been pretty rough since last Thursday.

The procedure to clear the port went well, but the drugs they used to clear it just absolutely laid me out.  It's been a slow road back to the "new normal" and has come only in small steps. 

Unfortunately, when this disease kicks you down, you can't hide it.  You can "man up" all you want, but sometimes the pain - or just the battle - exhausts you, then your wife is sure to notice.

When that happens, I stupidly tell my precious wife, "I'm sorry."  She looks at me in disbelief and simply says, "oh, sweetheart."  Then more tears.

But I AM sorry.

I'm sorry I screwed up our wonderful and exciting retirement plans.

I'm sorry she has to go through every gruesome step with me.

I'm sorry that virtually every night I soak the towel I'm forced to sleep on because of night sweats, or alternately, climb in bed shivering uncontrollably.

I'm sorry she has to see me get weaker and weaker.

And those apologies don't even touch all the other people who are so important in my life to whom I haven't had the inner strength to apologize to.

My Children:

I'm sorry I'm not the daddy you've grown to count on.  This disease slowly twists one more and more inward...something I fight every day.

I'm sorry I can't pick up your babies anymore, put them on my shoulders or play bing bong with them. 

I'm sorry I won't be there for their weddings or to see my great-grandchildren.

I'm sorry I may not be here to see my boy move closer after 12 years away.

My Friends:

I'm sorry I don't always return your phone calls immediately.  Usually the longer it takes me, the more I'm worried about breaking down (even in a positive way) in front of you.

My Students (Past and Present):

I'm sorry that I'm having more days when I'm less than 100%.  I love being around you so much, appreciate your love and enthusiasm so much, I want to be around you every day I can.

I'm sorry you have to take on more and more, but how it blesses and reassures me that you CAN and DO!  You are the BEST.

I'm sorry, former students, that when we've scheduled a lunch (to which I dearly look forward) I sometimes have to cancel because of a bad day. 

I'm sorry I may not be around to talk to a potential employer on your behalf; you gave me your best, I owe you mine.

.................................

I hate that ANY of the MANY people who have been so very, very wonderful to Kathy and me throughout this terrible/wonderful journey have to read tough feelings like this, but I promised my baby girl when we started this that we didn't HAVE to write about anything we didn't want to, but if we CHOSE to write about something, it had to be the naked truth.

..................................

Dear Mouse,

Last night I was trying to get my mind to go to a "happy place."  Mine went to the games of "hide and seek" in my office when you and Joe were little and attended University School.  We'd turn off as many of the lights as we could and tried to find each other (Joe was a VERY good hider...foreshadowing???).  I felt like a kid, too.  I looked forward to those games as much as you guys, and I STILL love a good game of hide and seek with grandkids.

I wonder how much the state paid me for all those games??   ;-) 

Love, Daddy



What They DON'T Tell You

(Written by Dave)

I know the emotions my beautiful baby girl wrote about in her last post (of COURSE, since we're connected at the heart).  And I'd be lying if I said I didn't suffer from them as well from time to time.  But the triggers are different for me.  As much as they tell you about this disease, there are many things they DON'T tell you; and discovering them, one-by-one when you're seeking SOME sort of normalcy (perhaps even feeling good) is the tough part.

They don't tell you you'll have to change your bed sheets almost every morning because of the incredible night sweats - at least until you find SOME sort of solution.  For us, that means I sleep on a thick, heavy towel - EVERY night.

They don't tell you how to discern if the pain you feel is from cancer - or just because you slept in a wierd position.

They don't tell you no matter how you "man up," you BETTER get that Vicodin in time.

They don't tell you that if anything goes wrong (like a clogged port) the cure will knock you off your feet for two days (when you were feeling great).

They don't tell you that, on top of adjusting to chemo, you're going to have to get used to seeing blood in the Kleenex every single time you blow your nose for 2 1/2 weeks.

I hardly ever rant on this special blog, but I guess it was my turn.  There are far more good days than bad right now (thank you, Jesus); last week the past few days have been rough though.

Dear Mouse,

Do you remember our nightly ritual of "around the table," or just what you see in the photos?  We both LOVED that special time, where either you or I (or BOTH of us) wore hats (or in my case a hooded sweatshirt as "The Screature"), you climbed on my back while I was on all fours, and we went around the table at different speeds and degrees of silliness as you got more and more tired.  Nobody TOLD me about that game, it just grew from our love.  Maybe there's something else they didn't tell us that will be as deliciously wonderful as that?

Love, Daddy  xxOx

Most of the week, I get by just fine. I stay busy enough that I don't have time to pause to think. I am totally able to give the canned answers that people expect when they ask how I'm doing or how Daddy and Mom are doing. And most of the time I don't even cry. If I do cry, I can usually shut them off pretty fast because I feel stupid when I realize that the other person has absolutely no idea what to say.

When I get to feeling sorry for myself, I watch a Lifetime movie about some poor lady who hires a nanny that sleeps with her husband and then kidnaps her kids. Or I'll start looking through other people's blogs. Seeing stories about parents who have lost their only child to war, or the woman my age whose little girl was unexpectedly born with down's syndrome, or the family who has two little girls with a terminal illness, make me realize that there are so many people in pain. Then there's the blog with the women who refuse to tell anyone the sex of their children or tell their children whether they are a 'boy' or a 'girl' because they don't want to "label" them or put pressure on them to be normal. They just make me feel like a pretty damn good parent.

Then, there are the other days. Like today. When I get so angry and so sad that I feel like I want to rip my skin off and be somebody else. Days when, in all honesty, I feel like I could run away- if it would do any good. I feel pathetic for feeling so pathetic. So the feelings of fear, anger, raw sorrow, embarassment- they just compound in my gut until I feel like my heart will explode into a million pieces because of the weight of those emotions.

I looked up the famous '5 Stages of Grief' today. I was hoping that Kubler-Ross could tell me how to feel next, or maybe tell me when I'll feel normal again so I can at least plan for that. Unfortunately, she did not. Here's what she says Daddy and I will feel:

The stages, popularly known by the acronym DABDA, include:^[2]

1. Denial — "I feel fine."; "This can't be happening, not to me."
   Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of possessions and individuals that will be left behind after death.
2. Anger — "Why me? It's not fair!"; "How can this happen to me?"; '"Who is to blame?"
   Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy.
3. Bargaining — "I'll do anything for a few more years."; "I will give my life savings if..."
   The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just do something to buy more time..."
4. Depression — "I'm so sad, why bother with anything?"; "I'm going to die soon so what's the point... What's the point?"; "I miss my loved one, why go on?"
   During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.
5. Acceptance — "It's going to be okay."; "I can't fight it, I may as well prepare for it."
   In this last stage, individuals begin to come to terms with their mortality, or that of a loved one, or other tragic event.

I was hoping that I was on acceptance and could prepare to neatly pack these emotions into a pretty box or organized filing cabinet and move forward. Unfortunately, Kübler-Ross added that these stages are not meant to be complete or chronological. Her theory also holds that not everyone who experiences a life-threatening or life-altering event feels all five of the responses nor will everyone who does experience them do so in any particular order. The theory is that the reactions to illness, death, and loss are as unique as the person experiencing them. Some people may get stuck in one stage.

Well, crap.

And, by the way, just in case you thought you had it all figured out with those 5 neat and tidy stages,

The extensive scientific studies of George Bonanno show that the Kübler-Ross stages of grief are, as Kübler-Ross herself explained, variable in extent and detail, and the entire process is not always completed.^[4][5] In Bonanno's book, "The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After a Loss,"^[6] he summarizes his rigorously peer-reviewed research based on thousands of subjects and conducted over more than two decades. His findings include that a natural resilience is the main component of grief and trauma reactions.^[7] The logic is that if there is no grief, there are no stages to pass through.^[8] Bonanno's work has also demonstrated that absence of grief or trauma symptoms is a healthy outcome, rather than something to be feared as has been the thought and practice until his research.^[9][10]
A 2000–2003 study of bereaved individuals conducted by Yale University obtained some findings that were consistent with the five-stage theory and others that were inconsistent with it. Several letters were also published in the same journal criticizing this research and arguing against the stage idea.^[11] Skeptic Magazine published the findings of the Grief Recovery Institute, which contested the concept of stages of grief as they relate to people who are dealing with the deaths of people important to them.^[12]

Thank you, Wikipedia, for being there at 4:30 in the morning when I need a shrink. Or some maybe less-than-reliable contradictory research.

So, Kubler-Ross and Wikipedia have no stage for freaking out about who you're going to call to side with you when you think you might have done something stupid and you need Daddy to tell you it's okay. There's also not a stage for how to sleep at night (without the help of cherry vodka) when your brain won't shut off, or how to stop taking your emotions out on your sweet babies. Thanks for nothing.

So, since I'm awake anyway, I need to make some additions to the Do's and Don'ts list. Please,
DON'T be offended if you've done a don't. Don't get all hurt and sad. I really only care a little bit if you do anyway, because my concern right now is what Daddy needs (and that should be your concern too), but I do care. We've all done don'ts.
I have an amazing friend whose husband has MS. They have two small children. I'm sure (although you'll never get her to admit it) that she experiences all 5 stages, plus my 3 additional stages and 10 more of her own, on a daily basis. One day, I was thinking about her and trying to imagine what I would need if I were her. I found some websites for people dealing with a spouse who has MS. I asked her if that would be helpful and she quickly told me that she is NOT into group therapy, especially with strangers. I felt stupid for a minute, but only because I really did want to help. So instead of crying and telling her that I felt really stupid (which would have seriously irritated her, I'm sure), I decided that I would just watch for ways I could help, because I knew if I asked she would never tell me. Besides, how did I NOT realize that she's perfectly capable of searching the internet herself if she wants to? Duh.
I have another friend who lost her Daddy to liver cancer before he ever met her babies. Then I have a friend who, in her lifetime, has lost a sister, a brother and a father. And another friend who cared for both of her parents in their final years of alzeimers and kidney disease. I wasn't there for any of them. I didn't know them, but even if I had, I wouldn't have done the right things, I'm sure. Now I know, though. I know what they know. That the people who help the most are the ones who expect nothing from you. The ones who are not offended when you tell them they're not being helpful. The ones who don't ASK you what you need- they just know. And then they do it.

But PLEASE,
DON'T cry to a sick person about how sad YOU are! Find another person to talk to about how sorry you're feeling for yourself, don't expect a person who is planning their eternity to make YOU feel better about the rest of your life.
And, on the other end of the spectrum,
DON'T avoid someone because you think you don't have the right words. You don't have to say anything deep and poignant, you just have to be there. Before you can't be anymore.

*rant off*

Dear Daddy,
Sometimes I feel guilty writing these things because I feel like I'm violating my own rules. But I'm guessing you already know how I feel anyway. ;0)  Sometimes I get so, so angry and scared that I want to scream at God, or run from Him- neither of which are really productive, or even possible. Then, sometimes, He will sneak in with something almost like a glimpse of my future. I can see, for just a moment, what a gift I have. This opportunity to love and appreciate you, to protect and advocate for you, to make sure that I've told you absolutely anything and everything I can think of that I want you to know. Oh, how I wish He would change his mind. But if He doesn't, at least He has given me time to accept His decision.
I used to love on rainy days when you would play "indoor hide and seek" with us (One of the very few things you could get Joe and me to play together). We ran and screamed with such abandon, we never wanted the game to end. Now, when I'm angry, sad, or just can't turn my brain off, I'll tell the girls it's time for indoor hide and seek. Sure, after the first time of Thing 2 standing in the middle of the room, covering her eyes, counting to 17 (while skipping 12, 14 and 15) and then screaming, "SIIIISSSY, you can't FIIINND me!" Thing 1 will sigh, "Hmphhh. Mooommm, I cannot PLAY with her because she doesn't DOOO it right!" But it gives me a reason to smile. Thank you for always giving me a way, and a reason, to smile. I love you.

I Never...But I DID...

(Writer's Note: This is a Dave post again...)

This disease causes one to take stock of their life: did I (or WILL I) accomplish everything I'd hoped?  Has all this been in vain (with apologies to Solomon)?  I'm not talking about a "Bucket List," (about which I have mixed emotions), but rather things like the following:

I never got to be a rescue worker like I wanted to as a child watching the obscure TV program "Rescue 8,"...but I DID get to help friends of ours save their marriage;

I never got to live in the old west with a rifle at my side like "The Rifleman,"... but I DID get to shoot with my brother Bruce and my sons TJ and John;

I was never as good a fisherman as I'd hoped...but I've had the BEST fishing buddies my whole life: Mouse, Joe, John Z. and John H.;

I never got to be good at sports, even though I love baseball and football...but I DID get to coach both my kids and enjoy the special closeness that a game of catch in the summer sunshine brings;

I never had many friends as a kid...but I DID get blessed with several wonderful, close, beloved friends throughout my lifetime - especially NOW;

I didn't have a very good family life as a kid, growing up with alcoholic parents and an abusive father...but I DID, with my beautiful bride, raise the two most wonderful, loving, strong, together children EVER;

I never could run very fast...but I can run JUST fast enough to catch my grandchildren;

I never was a ladies man...but I managed to get THE most beautiful, talented, loving woman at Illinois State University in January, 1975;

I never felt I was a very good co-worker...but I have the best co-workers anywhere I know of.  THANK YOU, especially Darlene and Michelle;

I never was very good in school...but I was good enough to get the degree that has been SO good to me for so long, and had the honor of teaching THOUSANDS of students over the years;

I never was good looking...but my granddaughter LOVES my short hair;

I wasn't able to avoid making some of the mistakes my parents made with me while my kids were young...but I DID convey, almost every day, how very much I love my children and how very, very proud of them I have ALWAYS been;

I never was as strong and exemplary a Christian as I had hoped to be...but I AM being given extra time now to try to do just that.

Loved ones, I urge you to consider every, single moment we have as God's gift.  Our time is really HIS time; eventually we have to give it back.  CHERISH the moments you have with your most precious ones and don't take the time - or them - for granted.  If there are friends or family with whom you need to share your faith or yourself......DO it. 

God has richly blessed me; I see that more clearly now than I ever could have before.  I am not bitter, angry or even scared...I know what comes next for me :-)  I am enjoying living life right NOW...more alive, in fact, than I was before the diagnosis.  I may not have done EVERYTHING...but I did SOME things  ;-)

Dear Mouse,

You know how I worry, especially now, about leaving things "undone."  We (you and I) are SOOOO alike that way.  Sometimes I wonder if I've left something - ANYTHING undone or unsaid with you or Joe.  I hope not.  Sadness at a time like this is unavoidable; regret ISN'T.

I love you more than my next breath.

xxOx
Daddy

"It's Wonderful - and Terrible"

(Writers Note: Angela usually starts these, but when I wake up at 3:30 a.m. with a post on my mind, I guess it's my turn.  ds)

People ask me "How's it going, or what's it like" almost every day.  Up until this week, my response was whatever came to mind.  I now have a new standard response: "It's wonderful...and terrible."

The terrible part is pretty easy to figure out, I suppose.  Nobody gets a diagnosis like this and thinks, "Whoa, bummer."  It takes weeks (maybe more for some) to get through the stages of grieving - usually associated with a passing, but certainly happened to me with this.  It's terrible.

It's also terrible to look TOO far ahead and imagine those you love without you.

Chemo and related treatments?  Maybe not terrible...certainly not fun.

But...WONDERFUL?

Oh, my yes, this HAS been wonderful in so many, many ways.

As we were traveling to Mattoon yesterday for Lauryn's birthday party, I turned to Kathy and said "You know, everything in my life is amplified now.  It's brighter, better, sweeter and more precious."

I see things in a completely new way.  I appreciate the fact that I'm still able to work and throw myself even MORE fully into my teaching.  I appreciate the humanity of people and will talk to complete strangers (SO "not me!").  I cherish in new and more special ways every single moment with friends and family...not in the desperate way of the last several weeks, but in a brighter, happier, in-the-moment way.

My life has been AMPLIFIED....WONDERFUL!

I watch in wonder as my beautiful, precious bride grows and becomes stronger every day.  We're learning the "new normal" together with fewer and fewer tears.

I marvel at my daughter's selflessness and determination, her toughness and her tenderness.  I hear the growth in my son every time we talk and Skype.  We have lost the need of the term "in-law" in our family: there are only sons and daughters, sisters and brothers.  My brothers John and Mark are no less brothers to me than my birth brother Bruce.  My sisters Jacqui and Lynda stand right there with my precious Silvia.  John is my son, Meghan my daughter.  WONDERFUL.

With my grandchildren (especially Kate) EVERY cuddle, tickle, kiss, game and chase is happier, more sweet and more important.  Every song with Claire, every laugh with Lauryn, every Skype with Luca and every "blown" kiss with Gianna gets infused directly into my heart and memory where it grows in value immediately.  I didn't think it was possible!  I told Kate this morning as we were cuddling in bed that I was like a "nice Grinch," because whenever I was with them they made my heart grow 13 times its normal size!  WONDERFUL.

At work yesterday, I stopped by the main office to drop off some paperwork.  My co-worker, Michelle, a cancer fighter herself, has turned into a close, compassionate, wonderful friend.  There were four students - just four of the 10 or so who are usually up at my office as my "other" family - with me.  Mic (Michelle) asked if they needed help, they answered, "We're his posse!"  Mic said, "they LOVE you, Dave."  They answered in unison and sincerely "WE DO!"  WONDERFUL.

My FORMER students?  On any given day, especially chemo days, I can expect an avalanche of phone messages, texts, e-mails and Facebook messages.  Led by people like Brent, DJ and Duff, they don't let my feet or spirits hit the ground.  WONDERFUL.

Friends?  Mine are beyond compare.  Kathy and I were already close with good friends like Craig and Carole, Scott and Dawn (my O.R. angel) and Rich and Joy.   Since diagnosis?  Amplified, brighter, more personal, more precious.  WONDERFUL.

Our church family has been there every single day with every single step.  We are aware of and cherish every single prayer.  So many angels bringing support, the Word - and FOOD!  WONDERFUL!

God is amplifying every moment, every second...making it brighter, clearer, tastier, more valuable.  It makes me wonder what it will be like when we're with HIM if it can be this good here. 

Dear Mouse, Thursday during chemo, I flashed back to when you were a little girl and had all those terrible ear infections.  We'd give you your medicine, and snuggle with you on your bed.  It always seemed like the only times we could really get extended cuddles with you were at book/bed/sick times.  In a wierd way, it sort of made me look forward to sick times.  I wonder if that's why I look forward to Thursdays, now.  ;-)  Love ALWAYS, Daddy

I've written a hundred journal entries in my head over the last week or two. Most of the time, there's something in my head that I can't bring myself to write down. I'm too afraid that it will hurt someone. But I guess that defeats the whole purpose of this thing.

Last week, we went to our first chemo. Daddy had a hard night the night before. Only those who have been on this roller coaster ride can truly understand what that's like. How it drains your soul. The lows of the ride usually last so much longer than the highs. So while we waited for the doctor, we talked about how badly Daddy just wanted one day to feel normal. He didn't even talk about the cancer going away, just wanting a day to have some energy and no headache, stomach ache, heartache.

The doctor told us that the Gemzar/Cisplatin regimen that Daddy's on will take 5 hours each time- 2 weeks on, 1 week off. I don't know what he was expecting, but it wasn't 5 hours. Then they took us in the other room and gave him six different prescriptions and told him that all of his hair would fall out. The original protocol would have left his hair. I could tell it hit him like a bullet to the heart. I did what I've become pretty good at- I think I separated from my own brain. God has given me the ability to pull away from my own emotions, my own fears, when I need to. I always wondered how people could stand at funerals without crying or go on Oprah a few weeks after their child had died. This is how. It's amazing really, but I wish I could have just gone on wondering how they did it.

When we walked into the "infusion room," I think we both almost threw up. I'm not sure exactly what we expected, really. But I can tell you that it wasn't rows of bald half-dead old people laying in recliners. We did it, though. The worst moment was the very moment that they pierced his port and let the chemo go. I had these visions of this poison coarsing through his blood. It physically hurt to think about it. I so badly want him to tell me exactly how it feels and exactly what he's thinking, but I know there are some thoughts that he just has to take to God. Five hours later, we went home.

The strangest part was the next day. I had mentally prepared myself for a sick, tired, balding Daddy. When I called him, though, he felt wonderful. He sounded- normal. He told me that he felt like he didn't have cancer. Over the next few days, each time we spoke he sounded even better. I couldn't put my finger on why that wasn't making ME feel any better. For some reason, every day as I'm getting ready to get out of the shower and get ready I have a breakdown. It must be something about the symbolism of starting a new day or something. So I would call and talk to him, hear his old familiar voice and then get ready to face the day with the peace of knowing how good he felt, and yet I felt worse. It's because my mind is forcing me to remember that he's NOT better. How selfish, I know. I'm so, so thankful that he's feeling good, I'm so amazed that God answered his prayer for some sort of "normalcy," and yet it brings me very little peace. That's the cold hard truth, I guess. I just don't feel any better.

Yesterday we went to chemo again. In the waiting room, we were forced to sit next to this woman and her granddaughter who insisted on telling us every detail of the woman's diagnosis, treatment, her breasts, her lungs, her remission, woes about the long wait, the weather. . they were relentless. We were 5 seconds from looking at them and saying, "we have our own problems, so would you just SHUT UP?!?" Normally we would have been able to tolerate them, but something about having cancer just pisses you off.

We were prepared this time, but we weren't prepared for his port not working. They couldn't push the chemo through it and had to give him one medicine through an IV. The other one can't be given through IV because it will destroy your veins. They scheduled an x-ray of the port for Tuesday, and we're just hoping that it's a simple placement issue and that it won't have to be removed and replaced.

For me, it's not dealing with the cancer that I'm struggling with this week, it's dealing with all of the other little crappy things. Yesterday, I heard myself telling God that I really didn't appreciate the fact that he would give us shitty roads on a chemo day. I was irritated that He wouldn't cut me a break. Then the port issue came up and I was angry again. Come ON, God! SERIOUSLY?! It's not enough that he has to come here, but you can't even make the damn thing work right?! Now, in the light of day, I have a renewed realization that, even though I can't see it, God knew these things were going to happen and I'm certain that there's some reason for it. I'm trying to turn my anger into strength, but some days are better than others. I still haven't opened my bible since the diagnosis. It should be the first place I turn, but I just haven't. I don't know what I'm avoiding.

So, over the last few weeks, I've been thinking about how amazing some people are and how stupid some other people are. I call them stupid with love because now I realize that I have been one of them in the past. I've been mentally compiling a list of Do's and Dont's for being around sick people or their families. Here's what I've come up with so far:

DON'T ask, "How are you?" Or, if you
DO, expect an answer of, "pretty shitty," and then
DON'T act all awkward when they say it.
DON'T say, "let me know how I can help," unless you are actually prepared to help.
DO feel free to ask questions about what it is like to deal with the illness and
DO feel free to simply tell them how much that sucks, but
DON'T tell them that you feel sorry for them. It makes them feel like a homeless leper.
DO ask if they would like you to forward them the research or stories you find on-line,
DON'T do it without asking.
DON'T be offended or hurt if they tell you that something does not help them. I have learned that every person is comforted by different things. Some people like to commiserate with others, but some people have their strength destroyed by this.
DO tell them that you don't know how they feel, but that you'll pray for them.
DON'T use your cousins sister-in-law who survived cancer as an example of why they'll beat it too. Your war stories aren't going to make them feel any better about their own battle.
DON'T say, "You're going to beat this." You don't know that. If nobody has ever beaten "this" before, it sounds trite. It would be better to say, "I'm going to pray that you beat this."
DO pray- if you say you're going to. Don't wait- do it right now while you're thinking about it.
DON'T take food over without asking. And if you would like to take food,
DO take food that can be frozen in case the person doesn't feel like eating it that night.
DO ask the person what they would really enjoy doing. Dad would rather go out to dinner with you than have you bring him soup like he's a senior citizen shut-in.
DO search your heart for what THEY need you to do or say. Most of people's actions or responses are done or said because they are thinking about their own emotions.
DON'T act as if they're already dead. Speak to them as you did before the diagnosis. Hug them, take them out, be patient, be THERE.

Dear Daddy,

I'm so glad that you're responding well to your chemo. I don't want you to think I'm not happy. It's just playing tricks on my brain. You've done so well that I can almost forget you're sick. Then it's so much harder when I remember that you are. Has that happened to you at all? I'm so glad you and Mom are letting me come to chemo with you. I love being there with you. I know that's weird. Too bad it took such a shitty thing for us to have 5 hours a week of uninterrupted time together, huh? I know you had a rough ride on the roller coaster this week. I hate that you had to stay on, but I was sitting right next to you the whole time. I can tell you for sure, though, that being on this ride has already made me so much stronger. It's an amazing feeling. I feel like, if I can get through this with you, I can get through anything. I know there's pressure for you to be strong, Daddy. I know you know we're watching you and hanging on to your emotions. I want you to know that I'm okay with anything you're feeling. If you're sad, we can be sad together and I'll still be okay.  If you're pissed off, we can be pissed off together and it will pass. If you're happy, I'll be happy for you. We can also take turns being strong for each other. That's what families do, right? I'm so proud of you.

Thank you for always letting me be who I am. You never told me I was too much or too little of anything- you just loved me the way I was. That helped me become who I am now- and I'm finally okay with that person. Love you.

Reflections

This week was a blessing. I've never had so many people in my house, so many messes, so many toddlers puking. I didn't mind a moment of the chaos. As a matter of fact, I would stretch it out if given the choice.

Call it denial if you want, but my brother and I were talking last night about how, mercifully, we have been able to force ourselves to temporarily forget-or ignore- cancer so we could get through the holidays without losing our minds. One of the good things that is coming out of this change is that my brother and I have talked more than we ever have in our lives. I have been awed at how similar our thoughts and feelings are. I don't know if it's just the natural progression of emotions or if it's a blood connection, or both.

Last night we both admitted that we haven't talked to most of the people we know since Dad was diagnosed. He said it was because he just doesn't feel like rehashing the terrible story. I said it's for a few reasons. I know that, in all liklihoood, whatever I say will make them uncomfortable and whatever they say will not make me feel any better. I'm also afraid that, because I can't find happiness lately, they will talk to me once and then find it too depressing to be around me. Then I figure that even if they don't mind being around me, they'll eventually get tired of hearing about it.

I know this will surprise those of you who know me, but I'm not usually a quiet person. Over the last week I've been thinking a lot about how I feel so lost and disconnected. I've been angry a few times about things people have said that are shallow. I've been trying to figure out who I am now- how this will change me. I couldn't really put my thoughts into words if I tried, but it is nice to have the opportunity to try. So I started wondering why I've been so quiet and why some of my friends have been so quiet. I was reflecting on how I used to respond when people I knew were faced with something like I am now. Then I got it- they're afraid they'll catch it.

I know they're not afraid they'll catch cancer. I think they're afraid they'll catch something else- sadness, fear, unanswered questions. Most of them probably don't even realize they're afraid. I know this because I did it. I used to change the cannel when commercials came on for St. Jude's or Cancer Treatment Centers of America. I used to pray to God to keep my family healthy and then force myself not to think about anyone I know who was unhealthy so I wouldn't become fearful. I used to buy sympathy cards and not even send them because I didn't know what to write. If someone I knew was dealing with an illness, I would ask about them through a friend before I would call them myself. I would give them a, "how are you doing?" and then try not to think about how they answered so that I wouldn't get too sad. Most of all, I remember feeling sad for my friends who have lost their fathers, but not ever really thinking about what it would be like to lose mine.

Over the last year or so, I've tried to face those fears a little more. I would send some money to St. Jude's without looking at the pictures of the children. I would go visit my friend with cancer and ask her to tell me about chemo and radiation. I tried to be more sensitive when people I knew lost family members. I don't know why I did these things, but I can't help but wonder now if there was a reason for it.

So you see, it's not that I can blame anyone. Sometimes I don't even want to hear my own thoughts. It does make me sad, though, that I'm so sad. I'm not generally a sad person, and I'm so afraid that I'm going to be sad forever now. I know that a part of me is eternally changed, and I know the change is not done yet. I have also learned that change- especially the kind that is forced upon you- is probably the most scary and painful thing we can experience.

The positive things is that I am already stronger because I have no choice. It's get stronger or die. I would rather have made the choice to face some of my fears on my own, but God made the choice for me. I am already learning to think only about today and let tomorrow take care of itself. Mostly because tomorrow is too scary to think about- and because I realized that all of those years of worrying and attempting to control the future were a waste of energy. And finally, I don't have to worry about catching anyone else's sadness, fear or unanswered questions.

Dear Daddy,
I know it was hard for you to leave today. It's so scary for all of us to face our lives again- to learn how to deal with the "new normal." None of us know how to get back to our lives because it's a new life entirely- one that we didn't plan or work for. What I cling to, though, is that we have each other. We appreciate every second that we spend together. We are stronger, and we love each other more. The worst Christmas ever was also the best Christmas ever. I think we'll probably have a lot of those days. Thank you for being so strong so that the rest of us can learn from you. I love you.