Pixelden

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.

Filed under:
No Comments

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….. 

Filed under:
No Comments

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.

Filed under:
No Comments

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. 

Filed under:
No Comments

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. 

Filed under:
No Comments