Wednesday, December 19, 2012

Clear as a Bell: Part 2

So the last post was "Clear as Bell", but we were still waiting on the brain.  Dr. Naryana cancelled my brain MRI for this past Monday because I also had an experimental PET MRI the day of the PET scan. It actually takes images of the brain as well.  The images clear enough to make a general assessment of the brain.

On Tuesday Dr. Volm told me that he had spoken with Dr. Narayna and  everything looked stable. What did that mean?  Stable? Volm said I should wait to speak with Narayana directly for a better explanation. Hmm...I was a bit apprehensive about the word "stable." I was hoping for something along the lines of vaporized, decimated, no sign of, no evidence of, no nothing.  However, the news is still really good as far as a brain doctor is concerned.  There are no new lesions and the ones that are there are very small, not growing and showing no activity.  Essentially, they are just hanging out now. C'mon guys, I know a great little spot in East Village where nobody would bother you. Oh, well. The lesions may never disappear but as long as I have no symptoms and there aren't any negative changes with the MRIs, than there is no reason to be worried.  Ok, here is where I release control.  Deep breaths.

As I said earlier, I was nervous before I spoke face to face with Dr. Narayana.  Nathan reminded me that this is our life now.  We are way ahead of the curve.  Very few patients with my diagnosis has progressed so far so quickly.  It is extremely likely I will live a very long life with continued observation and treatment.  I just have to manage my expectations.  He said to have faith that the news IS really, really good.  So, I'm going to break open the champagne on New Year's Eve and have a sip from someone else's flute.  It's going to be a great 2013!

Whatever you celebrate this holiday season, may you be filled with joy, health, hope and prosperity!

"...And to all a good night."

                            Clement Clarke Moore

Wednesday, December 5, 2012

Clear As A Bell

Okay - so there is so much information to share I'm going for bullet points and not necessarily in chronological order.

1) My PET scans came back clear as a bell yesterday! As my friend Laura would say, "Whomp, whomp!" I do have my Brain MRI coming up on the 17th but you all have my back so I'm not worried.

2) Dr. Volm is so pleased with another clear scan that he is giving me off from my January chemo cycle so I have a chance to enjoy a long vacation.  Luckily, I have family living in St. Maarten and they are flying us down for a warm, Caribbean vacation.  Ahhh.

3) Sadie is THE BEST!!!!  I am totally going to brag about me and her so if you don't want to be grossed out, skip to number 4.

Me: Sadie, why don't we get rid of some of your toys? You have a lot of them and there are children that don't have any.

Sadie: Okay. (As if this is no big deal, she begins tearing through her buckets of stuffed animals and toys.)  How about this, and this, and this, oh and I don't use this anymore, and this?  She continued for a good ten minutes and was giving up some prized possessions.  Finally, there was entire box filled of her toys.

Me: So, why do want to give your toys away now? (A few weeks ago, I had made the same suggestion and received a resounding, NO!)

Sadie: Because you give ALL your stuff away, Mommy.

Me: (lip beginning to quiver and eyes welling up with tears)  Sadie, you just made me the happiest mommy in the whole world.

Sadie: (genuinely surprised) I did? Oh, I am so happy for you, mommy. I love you so much. (Big hug and kiss)

Okay, I know this is complete, gratuitous, self-aggrandizement, but it will be with me for the rest of my life.  I found out my scans were clear and my daughter said the words above to me on the same day.  I'll never be happier than this.  Well, never is a strong word, but I am going to revel in and remember it for quite awhile...especially when she's pushing my buttons!!

4) Nathan's scans were also clear.  He goes back for a colonoscopy in six months and a follow up with the doctor in a year.  They are really confident about his status.

5) Thanksgiving was wonderful.  We spent it with my mom's side of the family.  Haven't done that in ages. Fun, fun, fun!  Loud, loud, loud.  Love, love, love.

6) Sadie's a theater-lover.  My mom has taken her to see two performances, Once Upon A Mattress and Alice in Wonderland at The Heights Players, our community theater.  She and her cousins were taken to see the Rockettes at Radio City for The Christmas Show by their Great Aunt Barbara.  She got to pet the camel after the show and now demonstrates to us the signature Rockette move, "you kick, and then kick, and then kick..." And last, but not least, she saw Angelina Ballerina LIVE with her Grandma Lynda.  Again...loved the dancing.  Wonder where she gets that?

7) She is getting very excited for Christmas.  We bought our tree and are decorating it a little every day. She is utterly creeped out by Santa Claus.  This is totally fine with me.  I rather my daughter NOT want to sit in a strange, old man's lap.  And I think I have escaped Elf on the Shelf for one more year.

8) My cognitive testing confirmed that I am road ready. I am back behind the wheel of our ever so sweet minivan.  Seriously, people, it has some great pickup.  I also found out that I am officially ambidextrous.  However, when I think of doing a left-handed cartwheel or using scissors with my right-hand, it gets very ugly.

9) Nathan turns 40 in January.  Take it from us, it's good to get "old."

10) We continue to be humbly grateful for all your prayers, well wishes and good vibes as we continue this journey.  Have a WONDERFUL, PEACEFUL & HEALTHY Holiday!!!

Tuesday, October 30, 2012

Stuck becacuse of Sandy

Just wanted to let you all know that Nathan and I are still in Nashville.  We missed the last flight to NY by 12 minutes on Sunday.  On Sunday, they said the earliest we would be getting out would be Wednesday early in the morning.  It seemed like forever but now we have no idea.  We are staying with our dear and generous friends Lisa Quillman Coviello and Dave Coviello.  Sadie is with my  mom.  My mom lives in a high rise; there is no rain damage and they are nice safe.  I have lots to say about reunion and your many responses to my last post.

Everyone in dangerous areas we are thinking of you.  Please stay safe and make smart choices.  No need to do anything but stay home and relax.

Sending love and safety to all,
Elisa & Nathan

Wednesday, October 17, 2012

Finding Fear

Many of you have been wondering where I've been, AGAIN.  Well, if God said to rest on the seventh day, I blame the whole brain radiation for making me think every day in September was a Sunday.  I must be the holiest woman in the world right now.  I write that and think, "How dare I use scripture in such an irreverent way?"

I write it and I "find my fear." This is how describe Sadie on the playground lately. A year ago we were expecting a hurricane-like event in the city.  Mayor Bloomberg warned the streets would be flooded and mass transit would be a mess for days. So my dear friend, Amanda, invited us to join her and her family to her parents' home in Jersey to weather (bad pun intended) the storm.  In their backyard, they have an old-school jungle gym.  It's made of thick rectangle beams, sturdy as they day they were bought, which had to be over 30 years ago.  It's the real deal because it actually has a see-saw/teeter-tot.  Good luck finding one of those these days.

That weekend Sadie was about two years old.  She climbed up the loose chain ladder with speed and agility.  She walked on a high beam.  She had perfect balance, unbelievable strength and demonstrated "NO FEAR!"  Everyone there was stunned.  Of course, I was like a peacock, walking around a little taller and that's saying something for someone one who is 5'2".  A year later, she has "found her fear."  She still has the strength and agility to climb the chain ladder but she gets nervous at the top where she must take that last step.  She realizes now that if she falls it will hurt.  She is aware of the consequences of her actions.  She treads lightly now or asks for help when I know, and deep inside she knows, she can do it on her own.

At the beginning of this year, I received two correspondences each castigating me for my use of foul language.  One of them was particularly strident while the other had more of a tone for dialogue about my usage of profanity.  At 37, I had never been addressed in such a manner.  I held on to the pain and anger for a long time. It shut me up and essentially shut the blog down.  I was afraid to use my voice (which has always included swear words) lest I offend someone who was praying for me, sending me love, etc.  Finally, through my own prayer and mediation, I found a way to forgive.  I confronted those who had injured me. They were nothing but apologetic and truly sorry for hurting me.  There was peace in my heart. Or so I thought

Within weeks more anger bubbled up, but it wasn't directed at them.  As I searched my soul, I knew in many ways I agreed with them.  Words do matter.  Words have a vibration.  Words have an intention.  Words can harm or heal.  But believe me, my words have never had the intention of injuring anyone, especially not my readers. 

My words, be they profane or not, are the few things I have in my arsenal to fight and free myself from this relentless disease.  C'mon. Give a girl a break.  When someone says, "shut the front door," we all know what that is code for so why not just say the damn phrase.

I am still mulling over this debate in my head.  I have a feeling there are more f-bombs to be dropped and hecks to haggle over.   Remember, this is my place to blow off steam, not just give medical updates. So, I hope you will reserve judgment no matter how it plays out and continue to send me and my family your prayers, meditations and vibes.


Tuesday, October 16, 2012

Brain MRI...

All Clear!!  Two teensy - weensy areas they are keeping an eye on but Dr. Naryana is thrilled with the outcome. I will have another scan in 2 months.

By the way, I am about to throw this computer out the window since I can't throw blogspot out. I had just finished a very long post, made sure it was saved and then when I went to preview it had reverted back to 20 minutes prior without all the revisions.  I will try again later.


Monday, August 20, 2012

Follow up on Spoiler Alert

This the problem with making promises.  Now I have to write today.  I said I would and there is no excuse not to.  I feel fine. I took a long walk with Sadie and our babysitter to the park, had lunch, took a long nap and now Sadie is back at the park with the sitter.

Her name is Courtney and I often refer to her as our babysitter instead of nanny because I feel that "nanny" has some socio-economic inference that we are upper, upper middle class.  We are not nor have we ever been.  I was raised by a single mom who was a teacher.  She relied solely on her parents if she needed help and they were no spring chickens.  So, we're starting to introduce her as our babysitter or sometimes even "niece" who's just helping out.

So back to our medical conditions.  That's what you want to hear, right?  Let me begin by saying that I often hear that Nathan and I are inspirations or the like to others.  However, I read the comments below before I started this entry and my heart leapt with hope.  Two individuals, "lowens" and "Staci" said that they had had the same stage IV breast cancer (bc) with the same grim diagnoses and now both are NED.  So thank you, thank you to lowens and Stac, whoever you are.

Since I have been such a terrible blogger, returner of phone callers, emails and texts, I am going to really draw the next few posts out. I'll just give a little at time.  To me, summer always has this way of being the longest and shortest season at the same time.  Trying to relax can be extremely stressful, especially when you have kids.

So let's see. Medically speaking...where did we leave off?  Ah, the last thing I revealed was that the original brain tumors had returned and they brought friends.  I believe it was twelve by the time we decided on whole brain radiation.  Besides those first couple of days of vomiting, my body adjusted very well.  Fatigue did set in quite quickly and I spent a lot of time in bed.  I didn't have the concentration to read nor the desire to, so I passively got sucked into The Food Network and HGTV.  I know they're all the rage but I could care less about cupcakes.  However,  I spent innumerable hours watching those folks bake their asses off.  And don't get me started on HGTV.

Sorry about the tangent but those were my life lines to some semblance of the outside world.  Moving right along, I brilliantly think it would be a grand idea to visit my friend Betsy at her parents' lake house in Michigan with another friend Laura two days after my last radiation treatment.  (If I can figure it out, I will add a video clip.)

We had a great three day weekend (as you saw by the video and photos above) but I paid the price.  Immediately upon my return I got sick.  I had a terrible cough, that everyone seemed to have and claimed it lasted a really long time), fever started and I felt cold when it was 85 degrees out and I had a ton of blankets on me.  All this eventually led to almost a week in the hospital.  What a fiasco.  Details to come.

Spoiler #2- in the next chapter my biggest complaint is Nathan and Sadie's trip to Color
ado.  At least, the neuro-ophthamologist was cute!  By the way, any time I see a doctor, his/her title begins with neuro.  I think when my hair grows back, I'll have to find a neuro-hairstylist.

P.S. Thanks to Bets for getting those pictures and the video up.
P.P.S. My cognitive abilities are slightly impaired (not joking).

Sunday, August 19, 2012

Weeping, Smiling, Fear, Flood Gates, Breathless...

After the great day we had with Sadie, I crashed because I had actually taken too much Klonopin in the morning so I was toast.  The end of the school ceremony (not her graduation) was outside and the sun was beating down on us so after a light lunch, I slept for several hours.

Nathan and I were in bed.  He watching a movie on his iPad and I reading a book, a real one, not a digital one.  I still have a few left laying around.  But I kept interrupting him with dumb questions like did he feed the dog or did Courtney know the new morning routine since she hadn't slept over in a long time and we had to leave early for my PET scan.  Oh, right.  The PET scan.

The PET scan.  The six month follow-up to see if there was any active cancer in my body, not including brain.  This was supposed to have happened in May but we all know what became a priority that month.  Regardless, I began to breakdown.  Tears, weeping, sobbing again.  Why did it feel so foreign to cry?

My Puerto Rican side of the family cries for everything.  We're expert criers.  We cry when we're happy, sad, overwhelmed, in awe, in fear, overjoyed, mournful, feeling get the idea.  We be criers!  But in this last year and a half, I've noticed that I don't really, truly cry.  I do have bouts of tears welling up, especially when someone is showing us a special kindness but alone, in my private space, even with my therapist, I don't go there.  If I do, I seem to "get it together" quickly and even apologize for it.

I wrote the above in early June.  Obviously a lot has happened in the last 8 weeks but I thought I better post something because I was getting a lot of flack from everyone.  I'll write a true update tomorrow.

Spoiler alert- we're all fine!

Friday, June 8, 2012

Sunshine and Smiles After All!

Turns out, Nathan and I were too busy watching, photographing and videoing our darling daughter on her last day of her first year of nursery school that we forgot to cry.  It was all smiles yesterday!!

Thursday, June 7, 2012

Weeping willow

Today I weep.  It's Sadie's last day of her first year of nursery school.  I am sure many other parents find this an emotional milestone but it occurred to me last night that I truly didn't know if I would literally be alive to witness it for myself on her first day of school back in September just a day before her 2nd birthday.

Only a couple of weeks earlier, we had discovered my original brain tumors and the prognosis was dire and quite grim.  I clearly remember having dropped Sadie at school with Maia one morning and falling apart into a hysterical puddle of tears as the teachers had just spoken of the "graduating" class at the end of the year and what their ceremony would be.  Graduating class?  For Sadie that would be three years from now.  I didn't even know if I would I would see my baby finish her FIRST year of nursery school let alone make it through pre-school.  Weeping.

I would say 99% of the time we live most days like there is a tomorrow.  We try not to get ahead of ourselves around here.  Planning our own calendar in advance is always crap shoot but we go for it just the same.  Then life sneaks up on us.  We look a few weeks ahead and a day on the calendar pops-up at us which has already been pre-set and not by us.  In this case, today's event had not planned by us, but by the powers that be...the ever-powerful school calendar.  Today is that day. TODAY!  Today is SPECIAL!  Yes, the tumors in my brain have come back in the last couple of months, but I am still here...TODAY!  TODAY, I get to watch my "big girl" finish her last day of her first year of nursery school.  Now that's a blessing! Thank you all.

I suspect weeping all day!

Wednesday, May 30, 2012

Side Effects Slide On In

Yes, I've been feeling pretty good expect those first couple days before I got the meds figured out.  Many of you even commented on FB today that I looked fine yesterday when I met with my friend Amy after my last whole brain radiation treatment.  I did.  I was tired, but come on, tired is totally acceptable.

So why look so "good." First rule of having cancer, I try not to look like I have cancer.  There is nothing worse than facing myself in the mirror in the morning, hair all patchy, dark circles under my eyes, no get the idea.  I might as well say, "Good morning, Elisa.  Remember last night, when you finally went to bed after Klonopin and guided mediation to counter act the steroids?  Yeah, well, HA on you, girl!  You still got it kid. You STILL have cancer.

Today, the EXACT day after my last treatment, I woke up, coughed and then ran to the bathroom to vomit.  Really?  The doctors did warn me of all the short term side effects of radiation which usually set on worse after the treatment because of its cumulative effect, one of which is nausea and vomiting, but just this once I thought I might get lucky.  Just once?  The meds seemed to be working.  Yes, I was jittery but the Klonopin helped to counter that out and I like to nap.  Oh, but, no.  They've been toying with me.  Lurking beneath the surface, waiting to pounce.  I actually believed this might be the one time I would be spared the "usual"side effects.  Yet at the appointed hour, as if a rooster were in on the plan, it emerged at day break.

There was one saving grace.  Sadie had spent the night at my mom's last night. She was Sadie's plus one for the school trip to the zoo today.  I crawled back into bed and Nathan made me a bagel to tamp down the nausea.  So much for my raw food diet today, but this was not the morning to chop kale.

I know this isn't one of my best and brightest posts but I am trying not to put pressure on myself to always be "me" whatever that means.  Today I am just a tired, quiet, mama who needed a lot of rest.

FYI- Upcoming Timeline:

The follow up to this whole brain radiation treatment will be in one month. They will do an MRI and I will meet with the radiation oncologist, Dr. Narayana, the same day.  I so, so love NYU and their efficiency. It really makes a difference.

Tomorrow is day one of regular chemo schedule and I will meet with my oncologist, Dr. Volm.  We will schedule my PET scan and echocardiogram (six month follow-ups) that were pushed back for the rad treatment.

Mid June: Nathan follows up with his oncologist, Dr. Weiser, on the very same day as our 7th year anniversary. How romantic is that? He'll have a follow-up colonoscopy at the end of June.

End of June: I meet with my neurologist, Dr. Vazquez, and hopefully get the all clear to drive again.  I know this sounds absurd people but really focus on this one.  The summer is upon us and I need that freedom to feel like I can enjoy it.  All my EEGs, sleep studies and ambulatory studies have shown NO SIGNS of ANY seizures so it means we finally have the right cocktail for controlling the epilepsy.

As I just said, the summer is upon us and if these two weeks of yuck stay on schedule, then I plan to resume a normal life immediately afterwards.  We have two short out of town trips planned (fingers crossed), but will mostly be staying close to home in order to maintain my chemo regimen.

I know many of you pray, meditate, send good vibes to Nathan, Sadie and me but before I sign off I ask that you add these special people my life to your thoughts as well.  My step-sister, Hayley, is going in for her one year follow-up from her breast cancer.  May all be well with her. My second cousin's mother, Florene, just found out her breast cancer has suddenly and virulently returned after two years.  Her youngest daughter is getting married in September and we all want her to be as happy and healthy for that blessed event. May she spend this summer healing and resting and getting the care she needs. Lastly, my dad, who thankfully does NOT have cancer, will be getting a knee replacement on Friday. He has had a couple of heart attacks and with any surgery there is a risk but he is determined to keep working and being active at 72 years old.  Bless his heart!  Did you get all that?  Phew!! There's a lot of praying, meditating, good vibing that needs to get done these days, people.  Hopefully this is how we heal our world, inside and out.

Peace and love, y'all.

Tuesday, May 15, 2012

Radiation Wretchedness

When it rains, it pours.  I know Nathan posted yesterday and gave you the fantabulous news about my latest and greatest cancer adventure.  What only a few of you may have heard last night is that as, I, the one and only Elisa Bond, or the 1% for very different reasons than they are protesting around the world, would have it, the wretchedness of radiation hit me hard the very first day...yep, right out of the gate. Surprise, surprise. (Eye roll.) 

Anyway, I feel much better this morning having gone to bed on a cocktail of steroids and Klonopin. And who doesn't deserve some reward after that hell? As anyone in my life can attest, I have probably vomited 20 times in my entire life.  I'm just not a "pucker."  On the other hand, when it comes to or rather goes from my my culi (pronounced koo-lee from the Sp. el culo or It. il culo) the bowl is my frenemy.  I will do absolutely anything not to throw up.  Bulimia could have never been an option for me. 

However, all it is not lost.  With my admittedly, unhealthy weight-obsession, which I blame solely on mass media for air-brushing the likes of Kate Moss, I feel I earned a reward.  My prize?  I dropped a  pound this morning. Granted it was probably only water weight and I am most likely dehydrated and will wind up on IV fluids by the end of the week, but let's celebrate now.  Better yet, let's fantasize.  Let's see...if I have 15 days of treatment plus two weeks of post-crappiness, I could potentially lose up to 25 pounds. Folks,  I could be my 10th grade self. I could give up my Not Your Daughter's Jeans*.  This is the key to getting through the next month and a half.  My strategy - This will be light at the end of the dark, Hobbit-fucking underground, no direction-having burrow that leads me through the Brooklyn Battery Tunnel, spits me out in Red Hook forces me to cross the Gowanus Canal by swimming and walking the rest of way home.

Obviously, I meant to post this last week but I just couldn't get my thoughts clear enough to make sense of them and wanted everyone a chance to digest the newest developments which Nathan so perfectly relayed.  You should all be aware that the drugs are working better and I am not suffering as I thought I would and thank god I have them.

Now a selfish request if you might indulge me.  I do want to respond to all your comments on the blog, on my Facebook page, on the Team Facebook page but I just don't have the energy. But please, please don't stop writing/commenting.  I read them all and my heart swells with love and hope and strength and courage.  Thank you for continuing to care in the many ways that you do.  Deepest gratitude to each of you.

*Every woman should own a pair off Not Your Daughter's Jeans no matter what your size or maternal status - buy a size smaller and you actually look a size smaller.  A true gift of modern fashion.  Oh and the asterisk thing - I am stealing that from Tina Fey's Bossypants  book which has given me the courage to open my big ass mouth again and let the chips fall where they may.  

Tuesday, May 8, 2012

Who Shot JR?

Who shot J.R.?

I don't think that there has been a cliffhanger like Elisa's last blog post since Dallas was on TV. Sorry about that, but cancer really sucks as a script writing partner.
At the end of the last episode we found Elisa hinting that her prized NED status was about to be done in, and as many of you probably guessed, it was.

We jump to March 5th, to our regularly scheduled Brain MRI, where we receive news that there is a new tumor in her cerebellum. It is small and the only one present so they are not too worried. The past tutors that they zapped with the gamma knife have almost completely disappeared (they take a while to break down) so the doctors are feeling pretty good about being able to treat this one the same way with similar results. They want to wait six weeks and then do another MRI to see if more show up and to see how fast the tumors are growing. So we wait. We grapple with the fact that Elisa is no longer "cancer free", which really she never can be. The reality of this new ever-shifting planet we live on takes a while to get used to. She keeps up with her chemo while we wait, and we try not to worry about the next MRI.

Six weeks go by fast and slow. Sadie keeps us laughing and amazed most of that time. She is talking up a storm, growing like a weed (37.5 inches now), and working on her comedic timing – which is better than mine already.

We find ourselves in the doctor’s office waiting to speak to him about the results, laughing with Elisa's cousin, cracking jokes. This is how we deal with the stress, we laugh. It's the only good part about brain tumors: a lot of good material for jokes.

The results show that there are now 5 tumors. The one from the last scan has not grown much but the other four have. The doctor mentions something about the fact that a few of the new ones are on the outer layer of the brain, which is unusual. He suggests that after we zap these with the gamma knife (to be scheduled for the next week) that we have a lumbar puncture test to check for cancer cells in the spinal fluid. No big deal, no rush. If they find it they can treat it with chemo injections into the brain. Oh, that’s all. We leave and start to think about the gamma knife.

 A couple of days go by and I start to wonder about what that chemo treatment in the brain will be like for Elisa. I do a little research. You can't find treatment information without knowing what is being treated. So I had to find out what they were looking for: leptomeningeal metastases, or LM for short. LM has a lot of symptoms, most of which are the same as the side effects of chemotherapy. This causes them to go unnoticed a lot. It also meant that our neurologist didn’t realize that Elisa had several symptoms that were on LM’s list as well as the placement of the brain tumors. It is a fine line between trying to be an advocate for a patient you are in love with and being a hypochondriac and I was not sure which side I was falling on, but with our track record I decided to call Elisa’s oncologist. Long story short, all the info was put together as well as all the heads of the doctors and they decided to postpone the gamma knife treatment and do the lumbar puncture first. All this takes time to arrange, and there are approvals and blood test to be done ahead of time. It also takes about 5 days to get the results back. That is a lot of nervous, stressful waiting. So what could we do to make it worse? How about have Elisa get a small tear in her Dura during the lumbar puncture that slowly leaks her spinal fluid. This fluid is keeping the brain suspended inside the skull. When the pressure is lowered you get an excruciating headache if you are in any position other than flat on your back. Yep that would make waiting worse. For 5 days Elisa was basically stuck to the mattress. It finally closed up by itself, just in time to go in and meet with the doctors and get the results. A quick side note about the results – this test gives a false negative 55% of the time. So the news that it was negative was welcome, but we were not over joyed. We thought that we would have to do another lumbar puncture, and after what Elisa had just been though, we were less than exuberant about the idea. Lucky the doctors felt that what they didn’t see  -no cancer cells, but also no other abnormalities in the spinal fluid was good enough and they would just do an MRI of the spine and brain to make sure there were no tumors in the spine and then move on scheduling the gamma knife. So now we are up to last week. The scan was Wednesday. Thursday Elisa’s went in for her chemotherapy and we meet with the neurologist to go over the latest scans.

This is where the season would end if this were Hollywood. I wish it would have.

The spine is all clear, but there are even more brain mets. Elisa is up to twelve now and they are spread all throughout the brain. The worst of it is that several of them are the ones they had already treated with the gamma knife, now growing back. The treatment plan changes. Gamma knife isn’t the magic wand (or laser) that we thought it was. We are presented with options. Gamma knife, in two treatments because there are too many to do at one time. However they feel that this will have to keep being done and there is the possibility that because of the placement of the tumors on the outer layer, it could become LM, as that is one of the pathways to the spinal fluid. The other option is whole brain radiation. I don’t think Mike Tyson could have hit us any harder than hearing those words did. We have worried about that from the day we first found out that the cancer had spread to her brain. So why do it? It is the best chance to kill all the cancer cells in the brain in one shot, and hope that this will stop the spread of the cancer. We learn that the long-term side effects are not as bad as we had thought. Yes, in a year or so there can be cognitive function damage. Things like not remembering what you had for breakfast, or a new name or phone number, or not being able to come up with that particular word you want to use in a sentence…. wait, have I had whole brain radiation before? There are the short-term side effects of the treatment as well. Things like headaches, nausea, and fatigue. They will last the duration of the treatment plus a couple of weeks after. After a lot of discussion we feel that it is the right move to go with the whole brain radiation. On Monday Elisa had a mesh mask made of her face so they could start the treatments Tuesday. They will use this mask to keep her head in the correct position each time she goes in.
Normally it takes a week or so before the side effects start to kick in. However Elisa doesn’t do anything half way. Within a few hours of her first treatment she is has a splitting headache and is vomiting, a lot. She never vomits. Her muscles ache. It hurts to chew, she can barley keep the meds that are meant to help with these symptoms down. They take a few days to work anyway. She is miserable. I just hope this means the cancer cells are even more miserable. One day down. One day at a time. 

My apologies for the run on sentences and poor grammar, but my editor is not feeling well.

Monday, April 9, 2012 salvation?

I haven't been able to write for...what...five months?  Today I came to Starbucks to write a letter of recommendation for my friend who is applying to get into grad school for her MSW.  I was able to get it done rather quickly, in about an hour with minimal distractions.  There were just a couple of phone calls but no Nathan, no Sadie, no cleaning, no TV, no nothin'.

This plan of writing outside my apartment has been percolating in my mind for months.  Amanda told me that this particular Starbucks, the one further from my house, was better to work at.  There's a lot of room,  more tables and a bathroom.  True on all accounts.

January: Nathan's surgery is successful but soon we realize the recuperation is going to be horrendous, much worse than we imagined.  And everyone asks, "So when will he be back to "normal?"  Immediately after surgery, Weiser met with Sharon and me.  He briefed us on how well the surgery went and I asked about the "back to normal" time line as well.  His answer was, "every year it well get better" Um...did he say "EVERY YEAR?"  For some reason I had summer in mind or at least before the fall semester started.  Year? Every year?  My heart sank.  I remember we will never be "normal" again.  Not Nathan, not me. This might have been start of my downward spiral.

The week of the 24th (Nathan's birthday) - Sadie is very, very sick.  By the end of the week, I am sick too but think I chalk it up to allergies.  Yeah, allergies in January.  Who the hell am I kidding?  Some of my Vanderbilt girlfriends are coming into town for my birthday so I guess I really want it to be allergies but I after the weekend I face plant.  On my actual birthday, the 31st, I have a very high fever and have to be rushed to the cancer center.  I am put on IV antibiotics and fluids for four hours.  Volm tells me he is going to "try" to keep me out of the hospital.  Luckily, my fever drops and I am cleared to return home.  I haven't been sleeping because of the hacking cough every night which hasn't let me sleep at all.  I am prescribed a cough suppressant with codeine and my body finally finds the rest it's desperately needed for two weeks.

February:  After having been worn down for the latter part of January, I am starting at less than zero.  Chemo is kicking my ass.  Every weekend I am in bed watching Housewives of Somewhere or Other and I wanna be an American Idiot I mean Idol.  It's the search part of the show so you know what I mean about the idiots.  These pastimes do nothing to elevate my mood but my waistline is ballooning.  My vista springs from an almost constant supine position. My daily apparel changes are from one set of pajamas to another and, yes, clean underwear.  Thankfully, I don't give up on general hygiene.  Bathing and brushing my teeth continue, I even floss.  Shaving my legs isn't exactly a priority but the hair doesn't grow with any urgency and let's face it, there's no need.  Our sick-inflicted celibacy continues.  How long can we go on like this?

We close in on the middle of the month and I am a bona fide basket case.  Valentine's Day.  Everyone is hearts and roses and we are celebrating the anniversary of finding out Nathan has rectal cancer.  Celebrating isn't the right word.  Acknowledging, observing, crying, letting the flood gates open.  My social worker and shrink had warned me that "anniversaries' are often trying times for cancer patients.  I had no idea.  It is also an angry time for me.  With the anniversary, everyone around us is joyful and celebratory saying "wow, isn't it amazing?  A year ago, all this started and now you are both well." WHAT?  And I know what they are referring to and it's all my fault.  It was my naiveté.  I was caught up in an exuberance.  The Today Show.  The "No Evidence of Disease" (N.E.D.) status. Nathan's surgery and a cherry on top.  None of it was or is that simple.  And it definitely isn't The Today Show's fault.  They were only following my lead.  I was doing cartwheels.  This was the news I'd been wanting to hear for almost a year.  I/we heard what we wanted to hear.  We heard what I/we wanted to hear.  We told everyone what they wanted to hear.  We jumped the gun.  The story was and is far from over...

Friday, March 9, 2012

Bueller?? Bueller??

Yes, I know I've been absent for quite some time. In fact, it's been almost three months since I've shared a real post and there are myriad reasons for that.  I thank all of you who have gently nudged me to write again.  This post has nothing of substance.  It's sort of a "soft re-opening." I just wanted everyone to know we are still here and there is much to catch up on.  My goal is to have all the gritty details up by next week.  For those of you who are new to this site, please be advised that this blog is recommended for mature audiences only as it contains indecent language as well as explicit depictions of humanity during crisis.

Thursday, January 5, 2012

Shit Happens...Finally

I'm not in the right environment or head space to give a detailed account but here's the poop so to speak!

Nathan went into surgery at 11:10 and was done by 11:40. The longest parts have been the prep and recovery. The procedure went very well and there were NO complications. He is complaining of a lot abdominal pain which to be expected but otherwise he seems well. He is thrilled to be rid of the ileostomy.

If there is anything new to report, I will post again. Thanks to everyone who continues to pray and send good wishes our way. Let's make 2012 a fabulous year!