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.