Pixelden

I think and write in my head a lot.  Really if everything I composed in my head was recorded on paper, blog or journal, I would probably have a book.  To be honest with myself, now is not a time when I have much time.  With the mama gig, and the cancer gig, I should be satisfied and grateful for having time with my lovely little boys, my sweet husband and dear friends.  I should be satisfied to heal, and observe and learn.

But of course my current gigs don't stop me from comparing myself with all the other mothers who are able to blog, clean house, do laundry, entertain and educate their children, knit, work for money, keep track of friends in life and virtually, sew fantastic outfits, manage multiple schedules, crochet, take pictures and seasonally decorate their homes. I am exaggerating, but maybe I am not. I truly think these women must be super human, or super tired.  I prefer to think super human, because I am tired and I don't even do a third of those things.  I'm tired just from rereading this paragraph.  I think they all must have capes.

Actually, I think we all needs capes. At moments in each of our lives we do things that may masquerade as ridiculously common, but are super human in skill, idea and/or action.  My husband making "speed waffles" to brighten a grouchy morning. A friend packing and moving a four bedroom house in six days while starting and commuting to the new job two hours away. Another friend easily managing her five children with joy, grace and not a single meltdown. A friend who keeps the home front and their two little boys busy while her husband serves in Afghanistan and Iraq. Dear friends who make time out of their schedules filled with work and commitments to make and bring food to others in need, to call and be present with friends even when their own lives are booked, to remember special days.

Back to writing, and specifically framing my ideas, pondering how to say what I want to say. There is so much. What ties it all together, and what do I want to write? How can I explain where I am at and share my thinking?

So it's gratitude.  The big and the small things, and for life itself and the platter of potential, hope and challenges it offers.  So much, so much, so much.

Gratitude: from the most present to the recent past

Benjamin:  his small sweet sleepy face, turquoise bink, and tousled hair appearing in the doorway two hours ago. "It's time to go to bed, Mama." Then his hand laying, gripping my chin as we lay in the dark. A deep sigh escapes his mouth, then sleep with his legs curled over mine. 

Charlie:  moments after I get home after treatment, he runs up, his little arms wrap around me and surround me in the biggest hug. "This is to make you feel better from chemo!"

Half Way!!! I have made it through six, yes count them, six chemos.  Only six more to go.  I went into Chemo Six very disconcerted, and somewhat discouraged. I had been planning the week on Sunday, and at one point forgot about Chemo, remembering put a damper on plans for the weekend.  But being through the sixth one WOW.  Chemo was smooth, Dr. Flam presented my case and two other this week and I've gained two more pounds.  I feel much happier.  Nauseated, but happier.

New beautiful friends.  One is a kindred spirit, and sister in so many ways, from our work, our families, our husbands, and our parents to our philosophy of life and our view of God in our lives.  She is a gift from God, and I am so grateful.  Another is amazingly joyous and faces life as an adventure (example: she and her husband and 5 fabulous children moved here from the Netherlands in January), and meets her friends where they are, gently and lovingly.  And another is a mama and an inspiration in living with joy and balance with 4 lovely children in a very small space.  I feel so blessed just writing this.

Allie, a nanny and friend: Each night bathes two tired and sometimes cranky boys and makes it look oh so easy. Her patience is like a deep well. When she arrives at 3, she calls for books and rest time. Sometimes there is resistance from the force of nature called Charlie and Ben, but she is in tune with these two boys and gently but firmly gets her way.  Another gift.

Help in difficult times: It took a week and a half with no extra help from friends or family for me to realize how much help we have had. The help, food and friendship gifted through my adventure with cancer is amazing and much much appreciated. These family, friends and friends of friends have saved the day on more than one occasion. 

 There is so much more on my list.  When I stop and think about all the good in my life, it so over powers the bad and resets and restores the good in my mind body and spirit. God is good.

One Request:

for those of you near me in location: I feel hesitant to ask, but we could really use some help with dinner on Chemo Saturdays, which happen every other week.  If you are feeling so inclined we would be very grateful and return the favor.  There is a calendar with a list of dates and sign ups  here:http://mylifeline.org/lovelydiedraliske/?page=calendar.cfm .  Thank you for considering it.

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Friday was a bad day, a sad day, but a good day.

Bad:

9/11

Fender bender in the truck

2.5 hour wait for the renowned and quite successful Dr. Flam

Lazy nurses

Chemo 5

Sad:

Remembering 9/11/2001

Tears 

Friend Jim, has lung cancer, very sick, had to stop chemo and be taken to hospital to remove fluid in lungs and around heart. Still is making me cry, as it is his second time in the hospital for this in less than a month.

Good:

Prayer

Love 

Light 

Faithfulness

God

Friends

Groshong Catheter

Caring Nurses 

A CLEAN PET SCAN: NO EVIDENCE OF DISEASE

Chemo– it's doing the job. Reluctantly, I must put it in the good category also.

I am now focused on the prize and am so thankfully happy, full of joy and not sleepy at all. I have been up since…

Wait, wait let me tell you. 

Since 5:45 am YESTERDAY.

 Yes, I have been up a full 24 hours.  I am not sure how I am not crashing. I did have some Jasmine green tea. Hmm.. mixed with my Chemo cocktail, coumadin (blood thinner) and anti-nausea meds, that might be the reason. I think there is a war going on in my stomach, more excitement that HDTV. Oh how I live for drugs and all their amazing side-effects.  Am I wired or what? Probably.

There is nothing profound in this post I promise you.  My focus is a bit off, I have lost four post due a variety of operator error issues– such as not saving, and hitting back on my browser window, such rookie moves. I am paranoid about saving now.  But really I am too wired, excited,  to even attempt something even vaguely interesting.  

Go on though, read if you must.  I know your eyes are just dragging themselves across your screen.

I just can't sleep, or maybe I don't want to. I feel like I am trying to catch up on the two years of being sick but not knowing why or with what, and trying to do everything I needed to do while raising two small boys 16 months apart.

I was not making it. Not at all. Trying, but just not getting the laundry done, managing the house or taking care of myself or the kids.  "Keep trying, keep denying," my mantra, always with hopes I wasn't sick and I'd be stronger soon.

Maybe, maybe not.  

Choking on food and trying to casually walk to the bathroom w/o throwing up all over the floor.  Choking on Ibuprofen pills for over 2 hours. Accepting a strange new set of normals: of drinking food rather than eating, debating what if anything I can have if we go out to eat, searching for liquid forms of medication, Charlie telling me it's ok and helping to the bathroom (there are tears as I wrote that).  

Now I am crazy with energy.  Honestly it's kinda exciting.  I can not believe how much better I feel. Each time I bite into a sandwich, I marvel that I can chew the lettuce, bread, tomato and chicken in one bite and swallow it without thinking much about it.  I can eat. I've even have overcome my new found fear of pills, olive oil helps. I can keep up with the kids mostly, as they are fast runners.  I have lots of ideas to keep them busy, I can anticipate many of their needs and next moves.  

And Jas, my dear sweet Jason who plods on with determination,  strength, and love even when he is bone tired and grouchy.  He and I are sharing lots of ideas on work and looking toward our future. He is brave. And as proof, he's taken our 4 and almost 3 year old boys camping for two day, while mama recuperates from chemo– of course he doesn't know of my all nighter yet.  I am so excited about the life of now and life of the future.

WOOT! I have no active cancer cells.  Now it's time for the Chemo Clean Up Crew, 6,7,8,9,10,11, 12.  December 18th here I come.

This PET means two things:

ONE: I am clear of active cancer cells: the chemo, my acupuncture and healthy eating are WORKING!

TWO: Researchers are studying PETs during treatment and their correlation to remission and regression.  If this early PET is clear, then there is a greater chance, or rather a large chance that my Hodgkin's will go into remission for good. I will be cured.

My brain is full of thoughts and ideas for now, for the future.  My spirit began it's healing journey months before my body, and I think that is helping me heal more completely.  Lets just say today is an Ebeneizer– a helping stone from God to remind me of his faithfulness.  I am so grateful and so blessed.

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I've talked about it for several posts now.  Time for a definition and description:

Straight from RadioGraphics/ Radiology journal (Radiographics. 2001;21:737-757):

"An uncommon benign disorder characterized by proliferation of dense fibrous tissue within the mediastinum. This entity is also known as sclerosing mediastinitis and as mediastinal fibrosis. Affected patients are typically young and present with signs and symptoms related to obstruction of vital mediastinal structures, such as central systemic veins, the esophagus, airways, and pulmonary arteries or veins. The precise cause and pathogenesis of fibrosing mediastinitis in most cases is unknown, and links to infectious and noninfectious causes remain speculative. Recently, Flieder and colleagues (2) proposed the term idiopathic fibroinflammatory lesion of the mediastinum to replace the present term fibrosing mediastinitis. In doing so, they emphasized that, in most cases, a definite cause cannot be established with certainty and that there is substantial variability in the histopathologic appearance of the lesions. Whether this proposed term will eventually replace the present term is unclear." 

My favorite word in the definition is "benign," which just means it isn't cancerous, but the word makes FM sound so harmless. In explaining what I have to other people, I am always a bit reluctant to say "benign."  When I do explain that FM is not cancer, there is almost visible relief.

As if the words running through their minds "Ah benign. Not cancer: Cancer is the most dangerous and deadliest disease, not too bad then.  She'll be ok. She won't die."  

"No, no," I feel like saying. "This is horrible.  You see, there's NO CURE. I have tissue growing around my trachea and arteries and veins strangling them..There are no protocols to follow, or any major clinical trials going on… anywhere. My doctor, a really really good oncologist, even wished I had Hodgkin's Lymphoma instead of this."  

Not to say that cancer is an easy alternative.  Cancer can be horrible, and the treatment is worse.  But some forms, especially the above mentioned Hodgkin's has a superior remission rate, to the point of being called cured (80 to 90 for stage 1,2a in the first 5 years). 

I almost feel like I have to apologize for not having something more easily explained.

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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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