Prayer

Dear God,

Please let my experience and my trials help others in need and provide strength where they may have none. 

Please don't take me before I have completed the tasks set forth for me here on earth, your work to be done by my hands. 

Watch me, guide me, keep me safe from harm. 

Please save me from the pettiness I fall prey to so easily: from the gossip, the vanity, and the rage.

 Help me do my little tasks with great love and to be patient, to be kind.

Help me put my trust in you that where I've found myself is where I'm supposed to be. Help me to surrender power to you, especially when I have no control. 

Help me trust your guidance and give me the faith that you will provide. Amen

The Elephant in the Room

Commenting

 on weight gain, I've come to find, is a social taboo far exceeding any comment regarding cancer, baldness, and/or dare I say, warts or a second head.

 It's true.

 It seems like people would rather discuss religion, politics, or prostitution to avoid what is so clearly staring them in the face. 

What's clearly staring them in the face is my face, my cushionoid moon face, along with my chins, neck wrinkles, and 50 extra lbs. 

I know it must be an off limits taboo subject worse than commenting about someone who is openly inappropriately intoxicated because I have the upper hand. 

A lot of times recently, Before I speak, I'm not recognized.

If you haven't seen the metamorphesis stage by stage, you won't recognize me. 

I don't look like me. That's how much I've changed. That's how much weight I've gained. 

I feel like I'm undergoing one of those social experiments when a thin beautiful actress is 

put in a fat suit to endure the experience.

 I say hello to so and so who I haven't seen in months but I've known my whole life and there's a pause.

They're probably putting two and two together. I certainly sound like Hillary. I'm with Hillary's family, but could it REALLY be her?

Then, sometimes there's a flinch like I've flicked them in the face, some just a momentary look of shock, and many (thank you all of you for reading me) remain stone faced as if nothing is different at all. 

What never ever happens is someone acknowledging the "elephant in the room" (aka me) and that they didn't recognize me. I assume it's because then they'd have to acknowledge my weight gain and that's uncomfortable. 

It could cause a social faux pas. 

It's like never acknowledging that there is only one black or white person in the room. 

We all see the person is a different color. 

They're definately sticking out. 

You can't miss the obvious, but don't let any comment, especially a joke, escape. 

Way to risky socially. I've made this mistake.

Are any of your surprised about that?

I'd like to take a moment to thank all those who do dare comment, even awkwardly. 

It's helping remove a barrier, a stigma, saying you need to be ashamed. 

Why else would you avoid a subject?

 I don't want to be ashamed of who I am or how I look. I don't want to feel like I need to hide myself due to a side effect of therapy. I don't need another obstacle, but so many people do feel this way. 

Body image issues play a huge role in coping with disease. Not only do you not feel like yourself, you don't even look like yourself. 

This often happens alongside the loss of significant roles.

 Suddenly you're diagnosed with cancer, you are no longer healthy, vibrant, and immortal. You are probably taking a leave from your work, you are no longer your title. You are no longer able to be the wife, mother, daughter, friend you were before. Your whole life and lifestyle has changed. 

Then you need to cope with the loss of a breast, kidney, or your hair!

Suddenly you're wondering, "who the hell am I?" You're still you but naked and vulnerable after everything that exemplified you before, everything that signified stability previously, has been stripped away.

 And then you can't even talk about it!

 Nope don't mention "the c word" or you'll make the person squirm. 

It's like replying "bad" to an informal "How are you?". 

We all know the answer is expected to be "fine." Any other answer is wrong. It's crossing a boundary. 

Well, sometimes for progress those boundaries just need to be breached.

 I'm lucky I have a support group that acknowledges what's happening to my body instead of telling me , "oh, you look fine" or "it's not THAT bad.". 

It is as bad as I feel it is. 

Some of the most encouraging, comforting comments have been made in passing like "your big face makes you look like you're always smiling.". 

I do think obviously sensitive subjects need to be approuched with sensitivity and empathy. Not everyone is me, not everyone would appreciate hearing about the terrible, obvious side effects they have to endure. 

Even I may burst out crying at a comment on the wrong day but if you feel you are the right person in the right situation to say something, I say you should. 

Physical side effects of treatment are isolating and its only made worse when those you love, and even those you just know, refuse to ackowledge the change.

Battling disease is scary, lonely, and isolating enough when physical signs reveal your secret to everybody but nobody acknowledges the change. 

I'm left feeling over exposed, like I've done something wrong, I've shown something I should have hidden.

 I don't want to feel like that. Not now. Not when I need to love and accept my body to facilitate healing. 

I say it is time to "go there". Push the envelope and expand the boundaries of conversation so differences are acknowledged and thereby accepted.

For Mother's Day, Moms, Give Yourselves a Break

Believe it or not. . . I've gotten a lot of criticism for
my behavior as a parent.

Everybody has an opinion on parenting, and 

are very vocal about their standards.      

What I've never received any commentary on, positive or  negative, is my behavior as a wife.  

Maybe it's because I don't divulge much about our relationship. Somethings are too private, especially when they involve people other than me.

Or maybe it's because with the state of families in America, with the divorce rate 50/50 one in two families are now "alternative." 

Despite the obvious widespread problems among America's couples, mentioning them is still off limits, and even though discussing meetings with your therapist at dinner parties has become widely accepted, almost vogue, mentioning couples therapy is still taboo.  

Usually the first mention of problems in a relationship to the outside world happens as a couple is announcing their separation.  

With these factors taken into account, It is amazing how little attention is paid to how the family dynamics affect a child's well being and how little overt tsk-tsking occurs when a marriage shows very real problems that are being expressed through the actions of their children. IT is also amazing how much pressure and fault 

 placed on the mother for any perceived flaw in their children or their rearing techniques.

You'd think with women's lib we would have evolved to recognize there are two parents involved, but much of the blame is still placed on the mother. 

And where are we to go when If you ever want to get two completely opposite opinions on the same subject, all you need to do is ask two parenting experts?

As a very sick mother, I know my priorities as a parent have been altered, but luckily, I know my priorities.

My priority is always the well being of my child, but I am not as focused on the long term outcomes of my child.

I prepare for the future, but will all-to-quickly throw that away for a good time now. 

 Think about what you would do if you realistically could die in your sleep that evening? 

Would you really want one of your last actions to be putting your child in time out? Even if he did do something as outrageous as, say, try to get out of evening homework time in the first grade?

That doesn't mean I'd ever allow him to be unsafe or aggressive, but I'm certainly more laid back on issues other parents obsess over. 

 It'd be nice to ignore others techniques, but competetive parenting seems to be a national passtime.              

 I am ultra-competetive. Don't get me wrong. But there is a difference between competing against my own standards and competing against someone elses.          

Ugh. Who wants to live up to that?  Especially when these days many scream you are failing your child if you are not a helicopter mom that lavishes endless attention on them when, in fact, both are scientifically proven detrimental.        

With all my life experience, and my unique, scientific study based free range parenting, let me tell you  what is really failing your child is neglecting your own  well being and relationships.      

When ever there is a debate regarding behavioral outcomes of children nature vs. Nurture is the first question asked.

Nurture being solely the child's environment, you'd think family dynamics would be getting more attention than whether or not they watch tv (again, for the people poised to write their comment, I'm talking in moderation). 

Role modeling is probably the greatest factor on the nurture side of the debate contributing to a child's behavior, that includes role modeling the relationship you have with your spouse, your family, friends, enemies, adversaries, etc.  

And we all know (or should), a healthy relationship can't be attained if you are not healthy (physically or psychologically) yourself.        

  Here is some advice from a non-expert but experienced mom, for mother's day this year ladies, give yourself the best gift of all. 
Give yourselves a break. 
No one will ever agree completely on how to raise a child.
The world would be a much easier and happier place if all the parents of the world would just mind their own kids , their manners, and their business, but they won't. 

Take it from a mom who has experienced the worst case parenting scenario: facing the possibility that I will die and my son will grow up motherless. 

 Life goes on if your child steals a toy at a play date when he is two. It also goes on if you simply take the toy away and don't throw him in time out or even if you are too tired or sick and let it go.

If you are not out shoplifting dinner, chances are your child will not be a burgular later in life.

Remember what is important. 

Yes, manners and behavior make huge contributions to a child's persona, but there will be no event to use any of these qualities you worked so hard to create if the child doesn't know how to have loving relationships. 

Remember to remember yourself. The best way to give your child the gift of healthy, happy relationships is to have them yourself.

Waxing, Bleaching, and other Prednisone Adventures

My all-or-nothing, in it and bring it habit has worked in my best interest again.

I always enjoyed being a less than size 2 since all the clearance clothing came in my size. I could always find the designer duds 

thrift stores too. 

Come to find out, the same works if you're a size 12 or 14 too! 

Once you get through those "average" sizes its a bargain shoppers dream. 

Good thing I tore right through those sizes like the tornado that took Dorothy's house.

What's inspired this? 

My friend's upcoming wedding and the sudden realization that I need to dress appropriately for a trot down her aisle! 

Aaauugghh! The horror with my swollen body and half grown out hair immortalized in pictures!

But I do want to take a second to thank the future bride, she's inspired me to find ways to look fine and learn to love the new me in the mirror. 

I've been practicing my dance moves, specifically the booty shake, for her big day. 

Mold your bodies accordingly ladies. I'm liking learning to work my curves, and really, I do feel like I'm in a completely new body. I have lumps and bumps where I've never had them before that get in the way when I'm bending or turning. 

Thank goodness for my trek to New York too where size can be a virtue.

Just call me ms. Ba donk a donk. 

In all serious, I look at the pros vs cons and realize I could never explain to x that mom can't pitch for baseball or play wall ball because she doesn't want to have hair on her face and gain weight (both side effects of prednisone). 

I can't even say that mom doesn't want to have or be remembered as having some lovely lady lumps. 

That wouldn't make sense at all. It certainly wouldn't go over well.

When a decision seems complicated sometimes I try to see it through the eyes of a child.

And what kind of example would I be for modeling self acceptance? 

I'd be a bad one, that's what I'd be.

Wax and bleach are made every day. I recommend do it yourself kits by nair. Buy them at any drug store. $5 a box saves infinite time and money running to the salon. It works best right out of the shower when steam has opened your pores. 

If waxing, I cut the strips to the shape I want my eyebrow, side burns, whatever to avoid losing more than I want to. 

Also invest the 20 bucks in tweezerman tweezers. They are worth every penny and double as the perfect sliver snatchers. 

I've lost count of how many slivers I've taken out all ready this season. 

Back to the dresses, I was on a mission. Mom helped me pick and try on 10 dresses that suited my body and hid my port in 30 minutes so I wouldn't be too late for pheresis. 

I found two dress options but unless Killy objects, I think I've settled on a fave that just by happenstance was $20! 

It's an iridescent blue that outlines my bust whuile hiding my port. I also found a fun lounging dress for $12. 

Even now I'm still loving the dresses. It just goes to show that style is style. It's all in the attitude and it can be rocked no matter what size you are.

Body Update

It wasn't all that long ago that I couldn't even sit still to enjoy the morning silence.

I was constantly fidgeting, moving, thinking of things that had to be done.

If I succumbed to my craving for coffee, the caffeine would send me flying off the roof before 7am.

Now, I can sit, relax and watch tv.

I can drink my coffee and soak in my morning dose of pessimism though the Bloomberg report or news.

That's the only pessimism I allow myself.

After this point, once X wakes up, my game face is on.

I'm lucky I've always been able to dissociate myself from my disease.

It's a talent I got from nursing.

By the way, it's Nurse's Appreciation Week.

Appreciate those nurses people!

Nursing taught me to separate the disease from the person.

As a professional this is an important aspect of holistic healing.

As a patient, it's been imperative to my psychological well being. I can see my disease as a problem outside myself that needs to be fixed. My cancer and I are not one and the same. I am not my disease no matter how much it tries to take over.

And my disease is still trying to take over.

I spent the day at DHMC yesterday, Dr. G and I dissected my lab results trying to solve the mystery as to why my hemoglobin is trending downward (it's 9.0 now) while my erythropoietin is only slightly elevated.

Good news is, it appears my kidneys are functioning ok despite the tumor that could be threatening them.

I am all ready taking folic acid to aid in production of healthy red blood cells.

I don't drink, which would alter them.

I'm going to try B12 shots, once a week for four weeks.

B12 deficiencies are generally vague in symptoms and there isn't really any contraindication to adding it to my medication regimen except I have to give myself a shot.

No problem there.

However, it's benefits are still being discovered. It could possibly help my fatigue, shortness of breath, and impaired memory.

Who-ra!

I also paid a visit to the techs in Pulmonary Lab, who reminded me I forgot to give them photo-cred from our last visit.

Those were some damn good pictures, thanks to their fun character.

There going up now.

Dr. W (the pulmonologist) requested baseline PFTs while I'm feeling well (I didn't even take my tank to New York this past weekend!).

Results for all you who care and can interpret them (I'm not among those people today), FVC 2.91%, FEV1 0.92, Dsb 13.39, DsbHb (that's corrected for my hemoglobin of 9) 16.09.

My resting pulse oximetry was 96%, that's pretty damn good if you ask me.

I'm back for more pheresis today.

No enemies

Toward the end of Sunday service, the Minister asked, "How many of you have forgiven your enemies?"

Eighty percent held up their hands.

The Minister then repeated his question. All responded this time, except one small elderly lady.

"Mrs. Neely? Are you not willing to forgive your enemies?"

"I don't have any," she replied, smiling sweetly.

"Mrs. Neely, that is very unusual. How old are you?"

"Ninety-eight," she replied. The congregation stood up and clapped their hands.

"Oh, Mrs. Neely, would you please come down in front & tell us all how a person can live ninety-eight years and not have an enemy in the world?"

The little sweetheart of a lady tottered down the aisle, faced the congregation and said,

"I outlived the bitches."

The Big Boys in Boston

It never fails.

It doesn't matter how long I've been sick.

It doesn't matter that I've been traveling for treatment for almost two years now.

The night before any major set of appointments I'm anxious.

Sometimes I get angry and cranky. I snap at my family.

I put myself to be early to hide so my attitude doesn't spread.

My disease may not be contagious but my frustration can be.

I was too exhausted and elated from our vacation weekend to be irritably stressed out Sunday night.

Instead, I tossed and turned.

I woke up every hour on the hour like somehow I would channel my inner Rip Van Winkle and sleep through my appointments for the first time in four years.

J slept badly too.

Test anxiety is a family thing.

All that seemed to dissipate for the first time ever yesterday.

J and I didn't even reach for our Garmen once during the entire trip.

We've been traveling so long, it's possible my jeep compass could drive itself down Longwood to Binney St and find valet.

I think our overall laissez-faire attitude was due to something even better than finally getting comfortable with the trip after years of treatment: I was feeling good!

Despite knowing the flaws in my PET scan, I handled a whole weekend vacationing with Xander (safely in Westchester County, NY. My father, however, was marched by NYPD to safety out of the M&M store in Times Square. Another friend actually got video of the bomb!).

As far as health goes, I no longer rely on blood tests and scans to tell me how I should be feeling. I listen to my body and judge how healthy I am based on what I can do.

Feeling well means I didn't even bring my portable O2 tank to NY with me!

We went to the Palisades Mall (that's the second largest mall in America people) and I managed to shoot hoops with X for an hour and a half straight at KrazyCity.

I think I could even coach soccer with assistance this summer. Last year I had to buy a bull horn because I couldn't even call for subs!

Even better, Both the big boys in Boston (Alyea & Wenhouse) agree: I'm doing really well!

My lungs are clear! No wheezes, snap, crackles, pops or otherwise adventitious lung sounds of unknown etiology (How is that for a tongue twister? I just wanted to sound smart.).

Dr. Weinhouse said the chronic pain I experience associated with my lungs (one of the most bothersome symptoms of my many ailments) is possibly due to hyperinflation afffecting the surrounding muscles.

With bronchiolitis there is air trapping in the lungs. I take in enough air but can not breathe it out. The air just doesn't escape causing my lungs to hyperinflate like a balloon that you keep blowing into.

Nobody freak out! My lungs will not pop, but my muscles do need to adjust and the adjustment is painful.

Dr. W also ordered me to start tapering the prednisone again.

This morning I took 15mg instead of my usual 20mg. He wants me to have pulmonary function tests to establish a baseline while I'm feeling as well as I am.

He has ordered me to be down to 10mg of prednisone daily in 4 weeks as long as my body is handling the taper.

I'm in awe, shocked and amazed. When I started steroids in December I thought I may never get lower than 20mg. Twenty mg was the dosage at which I was comfortable staying on indefinitely.

But look at me now, tapering like a wild woman.

Dr. Alyea was not so trigger happy with the taper. He did decrease my photopheresis treatments though!

Yes, after twelve weeks of twice a week treatments I can now trek to DHMC once a week!

I feel like I've graduated. Someone should throw me a party.

The original plan to stay in treatment until September (a total of 6 months) remains.

As far as the probable cancer reoccurence, Alyea suggested the actions we are all ready taking: decrease the prednisone in hope the graft will fight off the diseased cells. Watch myself closely. Report any symptoms quickly. Repeat the PET scan in 6-8 weeks.

What a coincidence! My next appointment with the big boys in Bean Town is in 6 weeks. I'll be sure to have my tests before I see them next.

I do have pictures of my shenanigans. I'd love to share them, but they are digitized in my new camera, the one I had to buy to replace the one I lost causing the lack of videos.

No promises, but hopefully I'll be getting some video footage up once I get an SD card. Then you all can really experience my life.

Big Girls Need Love Too

When I told Yanellie I had changed so much she wouldn't recognize me, and I was officially part of the "big girl's club." She told me to "watch myself."

She said that 150Lbs barely qualified me as curvaceous, especially at 5'5". She hits that on her thin days. 

I told her we'd wait and see because people's reactions to my appearance certainly have changed and a forty lb. weight gain along with buying a new  XL wardrobe is nothing to sneeze at. 

 In the past four years, I've looked like an anoerxic thirteen year old, a twenty something model, a punk rock mohacked momma, a bald beauty, a dying child, a very sick young mother.

With each of these exteriors comes a completely different reaction from people. I've been able to experience how different people are treated because of how they look and all without the magic of a make-up artist.

I've had the modern miracles of cancer, chemotherapy, an steroids to aid me with my bodily changes.

It is fascinating. 

I shaved my head early in chemo when I wanted people to respect I was sick.

 With a bald head, people will assist you. They know you are handicapped. They open doors, lift grocery bags and give smiles and sympathetic glances if x is misbehaving. 

On the flipside, when I look healthy, I get glares or curious glances from the eldlerly when I park in the handicapped spot. People look down their noses if I'm exhausted or can't breathe and can't control my child. 

Life is easier when everybody feels bad for you. 

Not everybody gets to experience the dichotomy of living two totally different lives.

In my previous life, I was one lucky girl. I came from a supportive family. I was cute and talented. I grew up with the proverbial (or even literal) silver spoon stuck in my mouth.

Now, on the flipside, I'm where just about everybody pities the situation and the trials I have overcome and it'd be difficult to find a willing participant to trade places.

I may as well revel in the social dynamics. Problems are only problems if that's how the person chooses to see them. It's in the eye of the beholder. It's all about perspective.

It's been interesting to see how the same people change their actions based on my situation, based on whether I have hair or not, now based on whether I'm 115 lbs. Or 150lbs. 

I've always preached that people should love the body they're given and work it like they mean it. 

That was easy for me to say when my body and looks were the same as all those seen on tv and in magazines. I felt like a hypocrite when I started mourning my flat abs and glaring at my pudgy checks and squinty eyes in the mirror. 

Men stopped whipping their heads around to stare or sticking their hands in their pockets when I stood beside them. 

I begrudged the change, but kept telling myself I was lucky to ever have been "that girl" anyway. I was hot enough in college to cause car accidents. 

Really. Literally.

Some poor boy was staring so hard he didn't see the car turning in front of him and rear ended her at full speed. 

Again, lucky for the experience. Those days are over.

 I guess I now know why people marry. J and I can lose our young beautiful bodies together, side by side, with out worry. 

That doesn't mean I'm not having trouble acclimating. I tried to fit into my size 2 jeans at 140 lbs. It took that long to finally admit I'd grown and start buying a new wardrobe. 

Now I'm working to find clothes that suit my new "body type."

 I officially look like a mom. I'm being treated as an adult who could be in charge of a ten and seven year old instead of the babysitter. 

My gray "mom" hair may have something to do with that too, but it's clear my days as a young fresh faced twenty something are over for now. 

I was personnally offended when FOX and NBC refused to show a commercial for Lane Bryant lingerie during Dancing with the Stars and American Idol, citing the commercial was to "provocative" or showed too much cleavage when more cleavage was shown on the dancers and idol ran a Victoria Secret commercial. 

I was in my livingroom pumping my fists, screaming discrimination and muttering about how those skinny chicks and executives better watch out. 

I've officially switched to the other side. 

I'm big and learning it can be beautiful. 

Even though cancer sped up the process so the changes in people"s reaction to me are more apparent, I think what I'm going through is something everybody will experience at some point. 

I've always said I live life fast. That pattern hasn't stopped. 

Now that I'm coming to accept myself, I'm learning how to work my "new" body with its look, size, limitations and abilities. 

It's fun to explore a new realm of myself and I'm always up for refreshing with a new wardrobe, no matter what the reason.