Pixelden

There are lists and then there are my lists. Invisible lists that run through my head like a Wall Street ticker 24/7.  Although lately it's seemed like my coverage has been spotty as I keep forgetting things on these invisible lists– Could it be a possible side effect of Tamoxifen?  Possibly.  Hopefully not.

Back to the lists.

Tonight, I am getting ready to go to Fresno for my monthly Check Up with Dr. Flam (oncologist).  Jason and the kids are coming with me and yes, WE HAVE NO CLEAN CLOTHES for this overnight trip.  How does this happen? I ask myself as I have avoided the washing machine for over a week. 

Laundry is the complete bane of my existence. I can often get all the clothes clean, but getting them folded is another matter. Tshirts often sit in neat flat stacks draped over the empty hamper, waiting. Pajamas are jumbled pelmel with an assortment of socks, undies and cloth diapers (now used as nose wipes), in a catch all basket for things that are easy to fold but I never do.  Permanently wrinkled is the  more correct way to describe our clean laundry.  It does sound worse than it is. I promise, I am only in my second round, fourth week of being behind the laundry eight ball……. Gotta go switch loads.

Loads switched. Four to go.. oh so much fun. Late night Laundry. 

 But what does this have to do with lists?  

Well, I was getting there, but now I gotta go fold clothes,

So I can pack the clothes.

So we can wear the clothes

So the clothes can get dirty

So I'll have laundry to do when I get back…

Ground Hog Laundry.

I'll get to the lists….. 

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I am up an hour and four minutes past my self appointed bedtime.  

Sleep seems to do wonders for my life.  I've kinda bought in to that concept, but the self discipline aspect always seems to get me… especially when there are things like twitter, facebook and reddit to take one's time.

Ah yes, I've revealed myself.  I was wasting my time on those things.

But I wander… SLEEP.  Life, kids, work, health all seem to do better when I have more sleep. 

I am able to get laundry done, wash windows, cook, plan, think about life, remember that I am "sick."

I am able to happily stay ahead of the boys, be cheerful, and get them to do what I want them to do, rather than the opposite. Lately things have been a lot more la ze faire, and although Charley and Ben have been perfectly happy with this arrangement, around 5pm the days frequently spiral into a tangle of conflicts, demands, tears, hitting and time outs for all three of us.  

So sleep is necessary.  

 We are so much happier when we sleep. Charley and Ben play peacefully with joyful noise.  It is like a miracle cure for the grouchies, and I am just talking about when I sleep.

Speaking of myself. I have decided that since there is no treatment/ cure for Fibrosing Mediastinitis I am going to heal myself. Sleep is healing, but I often sacrifice it for… well, see the above. Jason does get a few precious minutes.

Must sleep now, an hour and 41 minutes late.

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Yes.  It has been more than 18 months since I have posted.

Yes.  Between the present here and the past there, much has happened.

But to share it all at this moment would be a distraction.

It will come as I post more.

For now a few wordshots. 

Charley, Charles, 3.5, a big boy. Asked Daddy this morning to help him/ teach him how to make a B, and then made two more on his own.  Ask him what letter a word starts with and he can tell you, as longs as the words at this point are consonants.  Later at the park, Daddy taught Charley how to balance on the skateboard; he looks like a natural. 

Ben, Benjamin, 2.25, is NOT a baby (as he has told me since 18 months, "I NOT a baby Mama, I just Ben"). He was crawling at 6 months, walking at 9.5 and running by the time he 15 months… Talking? Most the time we can understand him, but Charley understands him better.  Ben sees Bs everywhere and tells me "That's a B for me."

Jason, J.  Dear husband and friend.  His business has grown enough to support us all as I've stayed home with the boys.  He is an awesome, fun and thoughtful dad. We've had our struggles, as a couple and parents, but we are learning how to navigate this life together, and our love continues to grow through all the new experiences of parenting and of life.

Me, Diedra, D.  

I am 38. 5'7" 120.

Wife. Mama. Teacher.

Sick.  Not the flu or cold, or even the guilty pleasure sick of a hangover. 

Sick with a strange disease. Rare.  Fibrosing mediastinitis.  A growth/ tumor is surround my trachea and esophogus and makes it hard to swallow easy to choke. It's a kind of sticky tissue that wraps itself around things in the medistinum, minor vessels like the vena cava, pulmanary arteries, lungs, trachea, caroded artery  We are not certain this is ALL I have, as I have been on a  lymphoma/Hodgkin's Disease watch for eight months.  In that eight months I have had thre sets of chest and neck CT scans, a PET scan–which led to the immediate end to Ben's breast feeding, chest x-rays, a mediastinoscopy, numerous blood tests, a barium swallow study, more blood tests, a trip to the ER for choking, and endoscopy that included stretching my esophagus.  

Some days I feel sick, tired, my throat hurts where the growth is, the growth hurts, my chest hurts, and I am bone tired.  

Most days I feel the same, just with a lump in my throat.

I live my same daily routine. The boys are a demanding distraction. I am busy with managing their needs and poorly managing the house from their waking until bedtime.  

Up until a month ago, we were in the "wait and see" cycle.  A pergatory of sorts.  Now, I am taking Tamoxifen, with the hopes that it will shrink the growth of the fibrosing tumors, and that it is not cancer.  But this is a trial, and I still feel uncertain about the diagnosis and myself… Am I really sick?  Why am I sick? What is this?  Why now? Am I just lazy?

Mostly, I float down the river denial and pretend that I can do everything I could always do.

More to come. 

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For too long I've let this beginning of a post sit in the virtual draft box mildewing and withering away… Here is a wordshot (aka snapshot) from the last year of parenting with two.

~February 2008: Tonight as I was nursing Ben to sleep, I was listening to Jason read to Charles and thinking about the books we've introduced and then read over and over again, many of which we all almost have memorized– including Charlie. Charles loves books and stories. He sits down right next to whoever is reading and just snuggles, getting into the story, asking questions and when he was smaller, almost physically trying to jump into the story. 

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So another long ass bed time– we are talking upward of two hours. It was an hour, but after another half hour of hearing his bedroom door creak open and then shut again and "Mama, mama, mama. Maaaaaaaama!"  I went back up to Charlie's room and checked in on him.  He's sitting there in his bed, "Want milk."  

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Sleep seems to be one of those things that I am always lacking in.  I mean at this point (2 plus years and 2 babies into parent/ motherhood) it has gotten so I just don't even know what it's like to get 8 whole hours of uninterupted sleep.  

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Finally! Charles started rolling over consistantly this weekend. So cool. I know, I know, it was going to happen sometime. But I had begun to wonder, questions seeping into my thinking:”Is he ok, are his hips ok? Have I done something wrong?” “Not enough tummy time?”
I really wasn’t worried until when we went to his 4 month check-up.
“Is he rolling over?” the doctor ask.
“Ummmm, no not really,” I said sheepishly. “He doesn’t really like tummy time. But he can pull himself to standing with help,” thinking that he’s doing something.
“Oh, don’t do that with him until he is sitting by himself; it develops the leg muscles before the torso. He will need the strength in his torso first.” Oops, messing him up already. Now I feel doubly stupid.
That was over a month ago. I began to worry a bit after Charles hit 5 months and still wasn’t rolling over.
I stopped the standing thing for a bit, even though Charles loved it. I soon realized that Charles though, is very strong in the torso, and he really likes to stand. It was part of our flying baby game. I compromised with myself: I would help him stand only after I practice sitting with him. So I kept helping him to sit by himself. I’d sit him on his blanket and lay soft toys close by. He would wobble, rock back and forth and tumble over, ending up on his belly, and then instantly burst into tears. But I’d sit him back up and spread hs legs apart like a tripod, encourage and love him up… and he sit a little longer each time.
By the end of this last week he sits as long as he wants, or until he wants something out of his reach. Then he reaches for it, wobbles and tumbles forward and lands on his bellly. Not so much crying from him anymore, just lots of grunting and a few cries of frustration. I tell him he’s doing a good job and then help him up before he explodes into the frustration cry. A few days ago he rolled from tummy to back at a friends house, kinda accidently. He was sitting, tumbled over and landed on his belly. So then rolled himself over onto his back so he could see everyone. I am happy and surprised, but he doesn’t do it again. That was Friday. Today he was playing on the floor sitting up with his cloth bowling pins–very cute. I set them up around him and he’d reach for one and knock down others. Of course some were out of his reach. He’d reach for these, tumble forward and roll on to his belly, a grunt and then voila his arm was streached out and he rolled over to his back, toy in hand. HA!
I had to see if he’d do it again. I set him up, next his bowling pins– he was the human bowling ball in my opinion. He did it again. This time he had the duck pin. One more time, and then I called Jas to come see. This time, though he falls backward so no need to roll over. Jas looks down at him and asks, “Are you rolling over for mom?” Charles smiles goofily at daddy and then shows him his duck bowling pin. That’s our boy. Go Charlie B!

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As of yesterday, (10/17/05), I am back teaching 4th graders. It does feel a little strange, but not for the reasons most people think.
“I miss my baby,” “I’m going to miss one of his firsts”–Nope those aren’t me.
I do miss the little bean, but when I am at school, I am a teacher, and I am sooo busy, I don’t even seem to have a moment to think, and this week is especially like that because I have yard duty durring recess–basically no stopping once I get to school, so no free moments to think too much about Charles. Besides, I am working for only half the day, so by the time I really miss him, it’s time to go home. Nice!

Finally, today, on Tuesday, I have a bit of a break. Charlie is asleep (lightly–he wakes up and looks around and then oozes back into sleep). I’ve eaten lunch, and I have a moment to recount my horrible first day, and now today, the better Tuesday.

Yesterday sucked big apples. It was a horrible first day. I didn’t know what I was getting into or what I was doing, it was all a little on the crazy side. I was cranky–from getting up so early, and then being almost late because I had to feed Charles right before I left (the second feed), and having no prep time. Then to top things off,(stupid me for trying to get something done other than planning and prep for school) I called personnel to explani a problem with my pay check and probably ticked the gal off. I was a little more than irritated to start the day.

Sidenote– Charlie is now awake, feed and changed; this update of course is taking me much longer than anticipated because of the usual interuptions (Charlie!).

Back at yesterday. It was a bomb. The lessons dragged. The day rolled by in a jumbled fog.
The students sat glaze- eyed at their desks contimplating when the afternoon teacher would arrive– I kept wondering when the afternoon teacher would arrive. We all were in a Monday Malaise– like all my big words? But seriously, leaving the classroom Monday, I was so discouraged. I didn’t feel organized-both mentally and in preparations, and I was ready to just quit. But then there was today.

After talking to my mom on the phone last night, I was able to verbalize my frustrations and set a path. And today was much better. I got up earlier, and Charlie ate twice, but earlier this time. I didn’t get to school as early as I had hoped, but I had more prep time. The students and I had a good time– possiblely because we did art and not much strenuous academics ;). But it was a good way for me to get a feel of what this group of 4th graders is like. I like them so far. Very sweet.

Well, this has taken me all day– on and off, when Charlie is sleeping and such– to write. I will write about the being a breast pumping mom part and more about the school experience in the next post. I am tired, and now it’s past time to go to bed. I had a nice relaxing bath, and Charles has been asleep for an hour, so good night for now.

D

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I seem to be starting every post with the word “So.” This is a test of a desktop assistant for publishing posts, called ecto… interesting.
More later.
D

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So it’s Sunday and almost nine in the morning and I am so not awake. This is a worry. Tomorrow I go back to work and have to get up at 5 am. I haven’t done that at all–well maybe once–during my eight weeks on maternity leave. Of course I AM up at 4am feeding the kid, but to get up for real and take a shower and such..Yikes!
I guess we’ll see how it goes.
Be back later with more thoughts…
D

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