cyber knives and magic carpets

My friends call or visit, send a card or chocolates, read my blog and comment, and poof! Like magic, I feel better.

One dear pal made a magic quilt. Low and behold, it multi tasked as a magic carpet and arrived just in time as I was in serious need of  instant transport out. The narcotics had impaired my driving, and just about everything else.

I have been poked and prodded on a regular basis since my initial breast cancer diagnosis over three years ago and at no point along the way did anyone pick up on the spreading disease. Damn straight I needed a magic quilt, a magic carpet and any other magic out there.

That big honkin’ tumor pushing up against my spinal chord and cerebellum was the giant buzz kill, party crasher, metastatic breast cancer. The cause of some major big headaches. Alpha to migraines and equivalent to finger in car door 24/7.  I needed super magic, uber magic, medical magic – if there is such a thing.

My Dr’s concluded I needed the Cyberknife. Sounded aggressive They assured me it was painless. Good patient that I was, I believed them. No time to waste, must shrink the tumor. I put on my fluffiest hat and jumped on my magic carpet. Whoosh.

Here’s what I knew about the Cyberknife. Nothing. With the exception that some agency had certainly been hired to come up with the name.

“Cyber” a common prefix, suggesting video games and battles, rarely used in the lexicon of the healing arts. I can only assume they called in the 14 year old boys for this one.

“Cyberknife” could have easily been a super hero, but WTF, someone slapped the moniker on the tumor seeking robotic arm that delivers high dose radiation and now we have a treatment that is branded. Ad chic that I am, I approve, but might have opted for something more blatantly descriptive like “Tumor Buster” or “Top Dog Rdx”.  No matter, no one was paying me for this naming gig.

Cyberknife treatment required the making of a custom mask and  as I mentioned before – I love masks. Turns out that the custom mesh mask that was made for my therapy was utilized not for performance purposes, but for pinning me down during the treatments.

The robotic arm aims lethal (to my tumor) doses of radiation. It is mission critical that the rdx rays hit the intended target.  Please zap tumor only. The mask, secured to the table is so tight across my face it leaves an imprint of reptilian marks across my face.  I had more fun with masks when I was in College and of all the times I have been pinned to a table this was for sure the least pleasurable.

An appointment with my Oncologist waits until completion of the five day Cyberknife plan. Five days, an hour a day, head to head with the robotic arm.  The tumor shrinks, the pain decreases. In a few weeks when the dust settles and the tumor cells scram, we will take more pictures to see what is left. I will pray the xrays have scrambled the egg.  More magic.

Looking ahead, every few months we will be journeying inwards via screens, scan and MRI’s in search of demon cells.  Join me on this adventure of a lifetime or should I say this adventure to save my life. Either way, I love your company and am so glad I am not doing this alone.

xoxomomo

saturday morning cartoons

We’ve eyed the alien Capt’n.

She’s hanging’ off the back of the skull and won’t shake lose. How in Jupiter did she get back in here? I was sure we obliterated her pink clan last time. I hate when they try to make a come back.

We’re cool Legs. Our alien here only knows how to replicate when undetected. Now that she’s in eye shot, it is time to say Sayonara skull loving sister.

Momo-mobilize every member of the fleet, we need a major presence.

When I give the cue, every true alliance, past pal, current companion, new contact, and Chez Momo Hip Ship family member should take their high intensity rays of hope and  pure beams of light and love and offer it up to the universe. Ask that it strengthen Momo and I promise our noxious alien will buckle in a garden of goodness.

They don’t stand  a chance.

experience required – part one

Results of the MRI’s taken mid December were a kick in the pants and a painful reminder of just how flawed self-diagnosis can be. Tsoris seekers everywhere (Yiddish term for folks seeking trouble) were putting their money on a herniated disk, when word came in that a 2” lesion at the base of my skull was causing all the aggravation.

Lesion  - sounded bad but more than bad, it sounded vague. Would Bacitracin help, possibly a kiss or a giant bandaid?

Appointments, events and practical details wandered off like fireflies. Tuesday I was out of town on business, Wednesday I was at a  pre-op meeting with a Neurosurgeon, Dr Ekkehard Kasper.

Over priced and over crowded, New Years Eve had never been my thing. With my biopsy scheduled for New Years Eve Day tradition continued and I would be staying in on New Years Eve. Staying in a hospital recovering from a Biopsy so delicate it required a neurosurgeons finesse to access a slice of the demon.

With his hand close to my right ear, Kasper explained  “You have a tumor the size of a small egg growing in here”. Glass flowers everywhere were jealous that his tender tips were all mine that moment.

I must have looked too calm, or too confused.

With a glint of boyish enthusiasm, he asked: “Has anyone shown you pictures of this yet?”

I had been scanned and imaged, measured and medicated but until that moment I had been without the benefit of visual aide. Kasper pulled a couple of the more compelling images from the MRI deck to pass around.

I think I heard Marty say “shit”.  I knew the Bacitracin would be useless.

The the area in question was circled. A near perfect oval, very much the small egg described.

The sutures were removed today and while the course black stitches reinforced my dramatic story, the real art was inside.

Muscles and nerves retracted to gain access to the tumor site were reassembled without event. While the breast cancer had spread, I had the uncanny feeling that it was my creativity that was out of control at this moment. That said, I put in my order for my own  set of MRI images.

xoxomomo

really screwed and a couple of nuts

Thanks sweet Marty for helping me jump-start one of the better parts of my cancer nightmare, my blog.

It wasn’t that I lacked for ideas.  It wasn’t that I just couldn’t write.

I’ve been in the hospital for over a week chasing debilitating pain and it’s kissin’ cousin the painkiller. Add to that a few hundred  “NO SHIT!” moments and any real writer would have blogs, books, calendars and possibly a screenplay under contract.

Not me. A week of all this pain and attention and not a line of copy to show for it.

I’ll be up front, lack of content was not the biggest culprit here.

It’s been a hot house of fantastic material;  A great staff, endless and wonderful visits from friends and family and just enough boxes of kleenex to cover the “aha”, “oh no” and “oy vey” moments.

I met Republicans in the Emergency Room who were afraid of affordable healthcare.

Learned that the cyber knife fitting involved making a mask  and I use to love making masks!

When a chat with friends turned to stool softeners, a perfect pair of BIDMC socks showed up courtesy of Hospital CEO Paul Levy.

I knew my stories would have to flow, but when?

The real problem, was that when I went to type, nothing looked like English. Here’s an example of an email I sent to a friend:

so gla dyou are with kil and had fun. Seems the irls had jsu as much fn! promise you must do this 2#  per year with forgive the typos – more about taht in pereson – nothing comes out riklt.

Was admitted tp the hositil this afternooon anf will stay through procudure  - hopefully leave riday.

marty is snooozing near me, frannie is with her anties and in auntie paradises and samw paime reliwf  has instilled my a good hekping og =opitimidim

too tired to wrtie more tomorroem xoxox

A number of days ago Marty sent around the email you will see below. That said, there may be very little here that is actually newsworthy to any of you. Call it plagiarism, I prefer creative collaboration. Marty was Copy Writer. I was the Art Director.

There’s more coming. I promise, but first a note  of deep thanks and gratitude for those who have sent love and prayers and food and flowers and wishes and warmth. In this dreadful situation you have been a blessing to me and my family.

Dear Friends,

Marilyn had a very rough night, perhaps 2 2-hour bouts of sleep, and the rest of the time unremitting pain and the impossible task of finding any kind of comfortable position. I spent much of the night rubbing her back.

Dr. Kasper the neurosurgeon came by and removed the dressing to reveal a long row sutures, but it feels better having the dressing off, which was pulling.

Marilyn said to Dr. Kasper that in addition to it hurting where the incision was,  that it also hurt on the top and sides of her head.  He said something like, “of course, we had to put your head in a vice like clamp and screw your head to the operating table with three screws to make sure that it did not move at all during the procedure”.

(Art Directors note: An image previously selected for comic relief and dramatic impact was pulled from this post, as it accomplished neither. )

Marilyn’s been seen by at least 4 MDs this AM, who seem to be taking the pain issue seriously, and will be switching her to patient controlled administration and letting her take more morphine than what she has currently been receiving, which has been inadequate.  They will try to get on top of the pain in the next few hours. Frannie brought in a monkey to act as surrogate for her sick mom. Marilyn attached the patient controlled administration device to the monkey .  Until they find a long lasting med Marilyn can tolerate, Marilyn has her morphine Monkey.

Momo is very much herself as the surgical procedure has left her sense of humor intact.

Marilyn is up for adult visits (no kids except Frannie). Probably best to call first to confirm.  She isn’t looking her best, may hopefully be sleeping though she hasn’t been comfortable enough yet.

Happy New Years all.

Love, Marty

xoxomomo

eggs extra large

I’ve had eggs on the brain. Just a single egg – extra large . Pushing up  against my cerebellum.

Sraight  from wikipedia,the  cerebellum receives input from a variety of sensory systems and other parts of the brain and spinal cord. It integrates all these inputs to fine-tune motor activity.^[1]

No surprise, I lose balance on occasion, and am challenged by otherwise simple functions, like typing.

Maybe this is all breast cancer connected, maybe not.  My biopsy is Thursday 12/31. I can expect  clean sheets, dinner in bed and with any luck my own morphine drip.

Call first, maybe you can visit. One rule, must bring gifts of food or flowers  for  the staff. After all who wants to  work New Years Eve.

xoxomomo

sugar donuts and a rest

The PET scan is the top dog of all scans – minus the dog. Dogs will be covered in a upcoming post entitled “my daughters surrogate.”

Prep for a PET scan, is strikimgly similar to the low carb, high fat South Beach diet.

In the case of a PET scan, you  replace 12 ounce cans of Coke Zero with  an 8 oz can of mint flavored canola oil infused with a nuclear tracer. For those of you concerned about the ill effects of artificial sweeteners, rest assured, more research dollars are spent on irradicating calories than cancer –  drink up.

My technician for the scan was the young and studly Andrew (or was it Aaron?) . We became fast friends. I offered my blood and in exchange, he promised to start his toxic elixor. But it was simply a tease; infusion interuptus. There were technical difficulties with the machine and technicians would need a couple of days to repair it.

I was ok with that. I had plans to go to DC for business the following day and any surprise, good or bad could wait.

I  was relieved, I was sedated, and I smiled for this picture below.

I returned a couple days later to the imaging clinic. Greeted tenderly by none other than Andrew (or Aoron). And, having made it through the better part of the week mostly coherent  and often charming I doubled my dose of valium and slept soundly in the sugar donut.

Reality is tough, but the unknown, a black hole of horror. That said, Marty and I wanted the diagnosis asap. We arriving uncharacteristically early we took advantage of some free parking. A little know trick I had gleaned from my daily rdx excursions.

It was delightful to be welcomed with enthusiastic hellos. The kind of hellos that suggest pleasant outcomes.

I brought chocolates just in case the ornery crew required some softening. But nothing sweeten the blow.

True, a single 2 inch tumor is far  better than the multiples we had feared. Unfortunately, this particular 2″ mass reared it’s ugly head inside of mine close to critical organs like  my spinal cord and brain.

Everyone was so busy with upcoming holiday schedules and the “real” emergencies at hand, that coordinating a biopsy was yet another hassle.  Yes, BA Cancer was the most likely candidtae, at the same time its presentations without mets and in my skull suggest good news would be in short supply. I have officially crossed the line to pessimist. Then again, I havbe been up since 4a, somewhat uncomfortable and burning multiple batches of cookies.

The relentless pressure on my head and neck is a constant reminder of  the alien within.

How do I feel? My head hurts, my humor is dark and  I thank god my friends and family have not yet bored of my stories, tsoris and tears.

The other evening I had a crying fest with my 9 year old. She shared that she was sad that I had cancer again, that she would miss my walking her to school daily and picking her up on a regular basis.  Guilty and pained I missed her already.

My compassionate  child did her best to comfort me. “It’s  not your fault you have cancer again mom, I love you.

Tell it to the gods, and to the wind and to the forces of nature over which there is not an once of control

xoxomomo

is it soup yet?

I make a great red lentil soup, and each time it’s a little different. Ginger and garlic to start. Add cumin seeds, onions, sometimes fennel or parsnips – certainly carrots. Love butternut squash or sweet potatoes, yukon golds work well too. Water or vegetable broth, possibly chicken broth and of course the red lentils.

If I use green lentils, then chopped celery is mandatory.

It all goes in the pot, a random mix like day old produce, shapes and colors and a promising aroma. I put the cover on and walk away. It is better without me.

Much later it is a fragrant mix the consistency of sludge. I share and we all chant “yum”.

Yesterday I received the equivalent of a grocery bag worth of information. Pieces from an MRI, another from the radiation oncologist. More from my primary oncologist, a comment from a fill-in PCP and not until much later did it make it’s way through the Martin sieve where it stewed overnight.

When I woke up at the crack of dawn with a headache, I realized it was caused by the tumor at the base of my skull. It all came together like sludge. I chanted “shit”.

My mom passed away 13 years ago, and today we had a conversation. She reassured me Frannie would be OK. She promised me I would be able to keep an eye on her and nudge her in the right direction. Everyone else would be ok. Eventually the economy would recover.

I thought about this cancer that grew in spite of chemotherapy, in spite of radiation, in spite of hormone therapies and vegetarian diets, accupuncture, exercise, supplements and pink ribbon tie clips.

I thought about natural disasters and random acts of violence and how the only thing we control is how we deal with what we are given. Soup recipes to follow.

pain in the neck

Pain in the neck.

Not the tedious too much to do pain, but the ouch I can’t turn my head pain. Accompanied by a relentess headache that favors my right side. Doesn’t make sense to me, but Vicodins work and Valiums are muscle relaxers and who says I can’t go to bed before my 9 year old.

“Given your circumstances we need to do some imaging” this from my totally glam PCP.

I know the drill. With a history of breast cancer, metastatic disease remains a threat. It doesn’t rock me much anymore, so instead I turn my attention to the docs Italian knee-high boots with overstitching and spike heels. Stunning. She is stunning. Makes me wish I was a Doctor with cash enough to shop at Barneys.

I had a herniated disk a few years back and suspect my current discomfort is just more of the same. I promise myself I will be mindful of my posture and exercise more. Haven’t been to the health club in months.

No word from the doc and then…

“Your MRI shows a lesion in the back of your skull”

To someone  else this could be devastating news. Fortunately I have nothing to worry about. I already know I’m a survivor. There will be tests later this week. A trip to DC for work next week.

Do you think I can learn to walk in heels? I just love those boots.

xoxomomo

the power of one

girlfriends