No Sleep 'Til Brooklyn

I'm going to try and make Fridays my regular posting day. We'll see how long that lasts but it's nice to have goals.

It's 4 am and I haven't slept a wink. Actually, an hour ago I was in mid-wink (thanks to 25 mg of trazadone) when the admitting resident threw the lights on to admit my new roommate who arrived at midnight. Oh, did I mention I am in the hospital? AGAIN?!

Yes, if one could earn frequent visitor points at a hospital, I would be in a presidential suite right now. This is my fourth hospital stay since April. It's become my home away from home. So what is it this time? Last Friday around 7:30 am I started to feel extremely woozy. Not a spinning of the room woozy but a stumbling drunk woozy. I was alone with Sadie because Nathan had already left for work. It was significant enough that I called my neighbor/bestie/attorney, Amanda, to come over even though she has a two week old infant, Isaac, and Alice, her toddler.

I was petrified of having an other seizure. I was literally squatting on the kitchen floor praying not to pass out or worse. Thankfully, Sadie was still asleep and only woke up when Amanda and the kids came over.

Okay it's outline time. Writing this series of events in long hand sucks. It's like reading an instruction manual. I am going to go for the Cliff Notes version of the past week's events.

Friday, Sept 16th- extremely bad dizzy spell early in am. Alone with Sadie. Petrified. Call for back up (friends/cousin). Call my docs. Oncologist and neurologist. Onc calls me back in less than 15 minutes. Will consult w/neuro. More symptoms: slurring of speech, sensation of droopiness on left side of my face, left eyelid twitching. Onc prescribes Decadron (a steroid) at 4mg every 12hrs. Thinks it may have to do with brain mets or swelling around them in the cerebellum which is what controls balance. Talk to neuro. She wants to admit me to hospital for observation to make sure I am not having mini-seizures. I beg her not to. Sadie's birthday parties (yes, 2 parties) are sat and sun. Don't want to miss them. She let's me off the hook with the agreement that should I get worse, I will call her and come in.

Sat/Sun/Mon- I feel great. Steroids give me tons of energy and we all have a great Sadie celebratory weekend. Tuesday onc's nurse practitioner, Peggy, checks in on me. Since I am doing so well they are going to drop me to 4 mg once a day in the am.

Wed- I am scheduled for a PET scan to see if the cancer has spread anywhere else. I have to fast from 8 am until the test at 2 pm. I eat 2 hardboiled eggs at 8am. Feel sleepy. Take a nap from 10-11 am. Wake up and feel same kind of woozy as fri before. Try to shrug it off. Take a shower. Shaving my legs. Wooziness gets worse. Abort hair removal. Get out of shower immediately. Get dressed. Hop in car service to cancer center. Arrive at 34th street. Zig zag across the street trying not to vomit. Seek medical attn at cancer center. Onc wants to send me to emergency room via ambulance. I reluctantly agree to hospital but no ambulance and no ER! Nathan arrives. Onc says we can wait at cancer center until there's a bed open & then head straight to admitting.

Ok- I haven't finished this entry but it is now sat evening which makes it almost 48 hours since I started this post. I want to be more consistent about posting so I am doing it now. Yes, I am entering an unfinished post. Is one allowed to do that?  Does anyone do that?  Well, here goes.

This is no cliffhanger but I hope you will continue to check back to find how the hospital stay ends. If just want to skip the rest of details, they do release. I am free. For now.

Halo, Dolly. Well, Halo, Dolly.

I know Nathan left you with a cliffhanger in his last post and there was good reason.  However, before the "bad" news, more on Sadie.  Tuesday, September 13th, was her 2nd birthday.  Dala (the nickname for Nathan's mom) made her famous vanilla cake with extra special chocolate frosting.  It totally lived up to the hype from Nathan and his brother who enjoyed it each year on their birthdays growing up.  As you can imagine, our diagnoses make us appreciate each day and cherish each milestone a little more.

So now...on the new season of Got Cancer?.  The shit hits the fan.  This is the shit...Nathan and I are crossing the street one day and I grab on to his arm suddenly. He looks at me with that "are you going to have a seizure look?"  Good lord, is this how we're going to spend the rest of our lives...worrying about me having a seizure at any moment?  I hope to god not.  I've got enough to deal with already.  I don't need to be under constant scrutiny.  He asks if I've told anyone yet to which I reply, "No," with an indignant smirk on my face.  "You should definitely tell Dr. Vazquez (the neurologist)."  "Okay, okay...I call her." Again, are we going to worry about every sneeze, every cough, every wobble?

A couple of days later, I am at my weekly consultation with my oncologist, Dr. Volm.  Everything looks good.  Then he routinely asks, "Is there anything else?"  "As a matter of fact, Nathan said I should tell Vazquez I've been a little off balance lately."  "How long has this been going on?"  "Um, a month I guess."  "Well, let's see.  You're last brain MRI was back in April. It's probably nothing, but, you know me, I'm very conservative so let's go ahead and schedule another one." Do you see it?  The shit.  It's looking right at the fan.  MRI results...I have brain tumors.  Bam. Fan.

Are you fucking kidding me?  Perhaps I said that on the post where I found out that in addition to my husband, I, too, had breast cancer but this is really getting out of control people.  Where's that goddamn lottery ticket?

So I didn't want to share this "bad" news until I could hopefully share an upside, if there was going to be an upside.  And there is...sort of.  There are 5 extremely small lesions in the brain.  I read the report.  It said extremely small so I am focusing on that.  Four of them are on the cerebellum which controls balance. Ding, ding, ding!  So I guess I have to give credit where credit is due.  Nathan saved my brain.  The other lesion is on the dura of the left parietal lobe.  You all have Google.  Please look it up.  I'm not up for an anatomy lesson right now.   How is this possible when last you heard the other metastases in my body were responding well to the chemotherapy and Herceptin?  Well, turns out that those drugs do not cross "the blood brain barrier."  Therefore, cancer cells can cross that barrier and allow other tumors to grow.  The brain becomes their safe haven where the drugs can't find and attack them.   Anyhoo, the plan from Volm's side was to add one, possibly, two new chemos to my regimen.  He also wanted to consult with the radiation oncologist, Dr. Narayana, to see what he would recommend as surely I would need some form of radiation.  Dr. Narayana's return from vacation had been delayed because of Hurricane Irene so we couldn't meet with him for a week, hence, the cliffhanger.  So back to Narayana who is another excellent physician at NYU.  His recommendation was to treat the tumors with Gamma Knife Surgery.  It's very high tech and the "surgery" part is a bit of a misnomer.  It's also extremely better than the alternative which is whole brain radiation (WBR).  The short term effects of WBR aren't bad but a couple years down the road there would likely be significant cognitive impairments.

This is what the procedure entails.  Narayana and the chief of neurosurgery, Dr. Golfinos, will be working in tandem.  I was hoping for McDreamy, but, alas, he's not actually a brain surgeon, only he plays one on tv.  I was also hoping for open brain surgery because that seems more dramatic and supports my theatrical tendencies, but, alas, no dice there either.  So Gamma Knife.  How does it work? A metal "halo" (see title's musical reference) with four points is drilled into the first layer of my skull.  This creates a stationery grid of brain.  Using a super duper MRI, they will map the location and size of my tumors a.k.a. lesions, and then, using 200 points of high dosage radiation zap the tumors.  In very simple terms, it's like laser hair removal but this only requires one session.  In fact, it's an outpatient procedure.  I will go in around 5:30 am and be out by 1:30ish pm.  I'll even be awake.  They'll give me some Ativan and another drug which I can't pronounce or spell and is the drug that killed Michael Jackson (but he abused it) so not worry.  The lesions are extremely small and the doctors are very hopeful that this will quickly and easily remove the visible metastases.

Again, it's definitely not good news but it could be worse...I guess.

Mom interrupted.  Sadie just got home from nursery school so I'm signing off.

Sadie Sidebar

Just a reminder to ourselves and to all, this is a blog about our whole family.  Not everything in our lives revolves around our cancers.  Therefore, we wanted to share this little tidbit about Sadie.

Monday night I was giving Sadie her bath and she had put all her bath toys and all the shampoo bottles into the water.  When Nathan walked in to join us he asked in a surprised voice, "Who put all of these toys into the tub?"  Sadie searched the room with a look of astonishment on her face, as if she, too, were surprised by the scene.  Nathan prodded, "Did Sadie do it?"  "Nooooo," she said.  "Did mommy do it?"  Again she said, "Noooooo."  "Well, who did it then?"  Once again she searched the bathroom for a culprit, the wheels spinning in her head, and finally blurted out, "Dorian!"  FYI folks, Dorian is her cousin and lives in Savannah, Georgia.  It was her first lie!  We were so proud.  We had been told by other parents that lying is a big milestone for a child's development and apparently science has proved it (see links below).   Listen, we know it's not rocket science, but these are the ways in which our child amazes us and keeps us in the present moment.

www.bbc.co.uk/news/10119297
http://www.emaxhealth.com/6705/when-children-lie-they-are-simply-reaching-developmental-milestonehttp://

THE CALM BEFORE THE STORM

Let me just explain right at the start that what I am about to say (whine, bitch, complain about) in no way changes my gratitude for all that I have nor does it change my positive outlook on my life. It’s just that, although my intellect and spirit can see all that I am blessed with, my emotions have just stuck their fingers in their ears, closed their eyes and gone “lalalalalalalalalala” in the corner. It isn’t listening to all the good news. So let’s review the good news first to see if that helps.

I am finally starting to feel less pain post surgery. It has taken 6 weeks but I am finally turning a corner physically. Elisa is having a much easier time dealing with the chemo each week now that they stopped giving her carboplatin. Her blood counts have been staying up, and she is even growing hair back! Sadie is as amazing as ever. She is talking in little but complete sentences. She is 36” tall and 30lbs of muscle. She can lift just about anything she wants. Her laugh is even louder and more delicious than ever. She is super cuddly with mommy and very gentle around daddy’s boo-boo. Sadie and I have breakfast together every morning again. We sit on the couch together and share a piece of toast over while watching Elmo or Barney. I have spent quality time with more of Elisa’s college friends that have come to help (they really are about the nicest group of women you could ever hope to meet). I have also been able to see many of my friends including my brother and sister-in-law as they stayed with us to help. My surgery went very well. I was on the operating table for a shorter than normal time expected - only 3 1/2 hours. Eighty percent of the tumor had responded to the chemo and radiation treatments so they only had remove the remaining twenty percent. Dr. Matin Weiser is really quite an incredible surgeon, and very nice too. I was out of the hospital in record time. We have continued to receive so many wonderfully kind and heart warming e-mails from all over. Quite honestly, I could go on for quite a while about how many gifts there are in my life, and I have. I do. Over and over.

My emotions just don’t give a shit. They are all over the place. They are favoring the darker more sorrowful side. It has made writing and talking to people about what is going on difficult. It is hard to not want to be or feel the need to be happy around those that you love and want so badly for you to feel better. It is difficult to no be able to do this to pull myself out of the funk. I keep feeling the weight of the year, the weight of the cancer, of my cancer, of Elisa’s cancer, of Sadie’s parents having cancer. In the beginning, it was almost easier to deal with. Things were bad, but they were busy. Everyday was a new test, a new doctor, new news, more information to think of and to process. It kept the mind and body occupied. You are sprinting at the beginning. Here’s the thing, Elisa warned me “it’s not a sprint, it’s a marathon.” Plus with Elisa’s type of cancer, there is no finish line. They will never refer to HER2 positive metastatic cancer as in reemission. She will have treatment for years. I have just hit that wall (all you runners out there know what I mean). It has been almost a year for me and I can count on one hand the number of days that I have actually felt physically well. It has worn me out. I am also admittedly not a fan of having shit continuously pour out of a hole in my abdomen into a poorly designed plastic bag. On Friday, August 25, I will be starting chemo again. I get to add a second object hanging off me, my 48 infusion bottle of chemo. I worry about what all this is doing to Sadie. She is so aware and tuned into her surroundings. She feels and senses everything. The first thing she says in the morning is “Daddy, shirt on!” She wants me to cover up my “boo-boo bag.” But it isn’t because she doesn’t want to see it. Heck she asks to see it all throughout the day and laughs when I show it to her. I think she senses my embarrassment about it. She also likes that she skinned her knee and has a boo-boo too. I think she wants to have what mommy and daddy have. Ever since she scraped her knee she likes to point out all of our injuries in turn, mommy’s then daddy’s then her own. It’s amazing and heart breaking. But perhaps this just means that she will grow up to be a caring, empathetic person who wants to help others. Maybe she will cure cancer because of all this. I just wish she could learn the lesson in a different way. It’s a hard lesson. The day to day grind of it....it’s relentless. It’s the bad sleep and crazy dreams from the pain medicine. It’s the 2 times during the night that you have to stumble out of bed to try and empty an over full bag of shit without getting it all over the place. It’s the limited diet that you can eat, again. It’s the not being able to help out around the house, or pick up your baby when she is crying at night. It is all the little things. It doesn’t let up. That is what is so hard about the cancer for me. It is as if a friend of a friend needed place to crash for the night but then moved in without asking, ate all food, never cleaned, used your toothbrush and then used the toothbrush you bought to replace the first toothbrush. However, it will get better. It is getting better. It really has to.

But let me end on some good news. It was six weeks that I wasn’t allowed to pick up my daughter do to the surgery. Sadly, she just stopped asking after the first week and that killed me, but I am cleared to pick her up now. It’s a very bright spot in my day, getting to hold her when she comes home from daycare.

This was the post I was going to post about three weeks ago. See the next post to understand why it all went to hell.

-Nathan
PS-I don't mean to create a cliffhanger but since blogs are read "backwards" I want everyone to get a chance to digest this chapter before moving on. We'll post again at the end of this week or next weekend.