Sadie Update

Okay...so Nathan and I have cancer. Bad.  We also have Sadie Abigail Bond.  Good.  And when I first broke the news of Nathan's diagnosis I said that cancer was going to be a part of our lives, not the entirety of our lives.  Well, I may have underestimated that a bit but my initial thought process was the right idea at least. This blog is for the entire Bond family and we don't want all the wonderful discoveries and stories about Miss Sadie and this time of her life to be overshadowed or worse completely obscured by our illnesses.

So here's some of the latest and greatest.  Sadie is in all her glory.  There are tons of visitors doting on her every day.  Packages arrive daily and she gets to open them just like Christmas presents.  Her mom and dad are home much more of the time than they used to be.   Clearly something has changed around here but only for the better.  And let's not forget TonTon (the affectionate French term for uncle) who arrived on Friday.  The love affair that began at Christmas immediately resumed.  Sadie is so enamored with her Uncle Joel, Nathan's brother.  She flirts with him.  She likes to just be next to him.  She constantly monitors his movements and is aware of his physical location at all times.  When I needed to lure her out of the tub the other night I said, "Do you want to see TonTon?" and immediately her eyes lit up and her arms flew up into the standard pick me up position.  It is so sweet to watch.  Here are some recent photos of Sadie in the gorgeous Easter poncho Tania and Brooke sent her.

Nathan Update

I know many of you are looking forward to the next chapter of Couple's Cancer - The Novella, but so much is happening at warp speed still that it's all I can do to relay the facts.  Please bear with me as I post the purely factual updates and I will attempt to reward you at least a once a week with a juicy chapter of My Big Fat Tumor.  Can you tell I'm trying out titles for the book people are encouraging me to write?

Friday, March 11, 2011:
Nathan got his 3rd chemo treatment-including oxcaliplatin, leucovorin and folfox. 
Aldo accompanied him.
An ultrasound was performed on back side of Nathan's legs from buttocks to heels because he had been complaining of soreness the last few days.  All was clear.
Nathan came home with first chemo bottle which diffuses over 48 hour period.
Sunday we go to hospital to learn how to detach the infusion from the mediport properly.

Thursday, March 10, 2011:
Incredibly eventful drive to the radiation oncology consultation.  To be recounted only in the book and/or movie version. 
Met with Dr. Karyn Goodman.  Amazing. Explained radiation protocol and was most personable of the MSK doctors so far. 
Next step will be for Nathan to go in for simulation which will include making a mold of his pelvis and a few dot tattoos on his buttocks for accurate positioning for each treatment.
During chemo/radiation which is 5.5 weeks in duration, Nathan will be getting radiation for 15-20 mins each day, 5 days a week (total time in the department 2 hrs) and then getting a take home bottle of chemo for 24/7.  No showers.  Sponge baths only!  Ladies, don't even think about getting your hands on my man.

Symptoms Update:
Blood in the stool has subsided
Number of stools down by 50% to about 10 per day
Firmer stools

Side Effects:
Immediate neuropathy-tingling of fingers and lips
Immediate reaction to cold.  Even breathing, the air passing over his lips feels cold and it wasn't very cold yesterday.
Very fatigued.
Muscle soreness around the port
Slightly grumpy towards wife

A Request

My Vanderbilt friends are up to no good.  I know because they were rifling through my albums the other day and taking some of my photos home with them.  I did find out that a website is being built on our behalf and the architects would like some still photos and videos of Nathan, Sadie and myself if you have any to share.  Of course, there are tons of me, I was an actress for Pete's sake but photos of Nathan are few and far between.  If you are in possession of any Nathan photos and/or videos, please pass them along to Melanie Dayani-Smith at mcdayani@aol.com.  Apparently, there is some urgency to this request so please contact her at your earliest convenience.

Thanks all!

A Stay Has Been Issued

Thanks to everyone who has been wishing me well on tomorrow's procedure but it's not going to happen.  I spoke with Dr. Volm this afternoon and he has agreed to give me a one week postponement on getting my mediport implant and first round of chemo.

With the news last Friday, the second opinion yesterday and, frankly, the last three weeks being what they've been, I needed some time to come up for air.  I am sure you all feel as anxious as I do to start attacking the cancer but I need to get some pieces of the puzzle in place before I begin treatment.  I want to consult with a nutritionist, the social worker, a therapist, an acupuncturist, a homeopath, my favorite high school nun, etc.  You get the idea.  I want to have my team in place. Dr. Volm said it made no difference to wait so I will have the implant and first round of chemo on the 17th instead.  Hey, that will be St. Patrick's Day.  I didn't even consider that until I just typed it. Perhaps, I'll get a little bit of Irish Luck to go with my chemo or at the least a Guinness. 

I will post more tomorrow but I'm wiped out.  Nathan's already out cold.  His cancer doesn't seem to have the insomnia side effect mine does.  He's been such a trooper.  This last round of chemo wasn't as bad but it still packed a punch.  Thankfully, he didn't have the oxciliplatin so he didn't have that cold sensitivity to contend with.  Tomorrow we will meet with his radiation oncologist, Dr. Karen Goodman. 

Thanks for checking in. 

Notes from the 2nd Opinion

I have a lot to consider today and need some space.  I appreciate all the calls and emails and texts wanting to find out what the next step will be but I don't know yet.  In an effort to give you the information we received yesterday, I am copying and pasting Rachelle's notes below.  I think we are leaning toward NYU but again I have some work to do today so please be patient with me.  I love you all and thank you for following my every move to demonstrate your support for me.  xo, E

 

Dr. Seidman - MSK - March 8th, 2011

Notes:

CA = cancer

• 5% of breast CA happens in women < 40 years of age
• 5-10% of breast CA present with metastatic disease at time of diagnosis
• 20-25% of all breast CA is HER2 +
• Randomized trials have produced results that inform current treatment regimens: taxanes (Taxol/Paclitaxel, Taxotece/Docetaxel)
• Carboplatin shown to have a synergistic affect of taxanes in combination with Herceptin
• Partial response = tumor shrinkage vs. complete response = tumor eradication 
• < 5% of scans ever become completely normal (meaning no cancer anywhere)
• Most commonly tumors shrink = remission - then chemo can be stopped while Herceptin is continued indefinitely (keeps CA in remission)
• Remember: tons of research around HER 2+ CA - many new agents in Phase III drug trials - a lot to look forward to!
• Be on look-out for: TDM1 (immunocongugate/"smart bomb")
• Even if getting treatment @ NYU - can still be apart of new studies @ MSK if one comes along in the future
• Recommends baseline MRI of spine - will also follow bone scans
• Will continue to work with Dr. Volm is choose to receive treatment @ NYU
• Recommends Zometa and XGeva for bone strengthening to be given in combination with treatments (minimizes pain, risk of fractures, etc)

Authors of studies:

1. Nicholas Robert - benefit of adding Carboplatin to treatment regimen
2. Edith Perez - benefit of weekly schedule dosing of chemo

Treatment: Abraxane Vs. Taxol (both are taxanes)

• FDA approved new version of Taxol = nanopartical albumin bound (meaning protein coated instead of lipid coated)
• Avoids allergic reactions to drug because the solvent has changed - so if used alone don't need premeds (antihistamine & steroids) - However will be used in combination with Carboplatin and therefore premeds must be used regardless 
• Published in 2010 @ MSK by Dr. Seidman
• Measure its affect after 3 months with PET scan (same as Taxol)

Chemo side effects:

• Chemo affects not only CA cells but other cells in your body that grow and divide rapidly (hair, nails, bone marrow (white and red blood cells)
• 3-5% chance of getting an infection because of decrease in WBCs
• 1% chance of being hospitalized from a serious infection caused by decreased WBCs
• Young people have less risk for chemo induced anemia (2% chance might need blood transfusion for severe anemia)
• Anemia causes fatigue (can expect mild fatigue)
• Temporary decrease in platelets is very low with these chemo agents - "very low chance of bleeding problems"
• Very mild chance of nausea (none of these agents are specifically nausea inducing)
• Muscle/joint aches initially - for which you can take either Tylenol or Ibuprofen

Premedication before Chemo: (decreases possible allergic reaction to chemo agents)

• Antihistamine (Bendadryl)
• Steroids (one time dose on that day) 
• Allergies to Carboplatin usually occur around 7-8th dose (7-8th week) and can include: swelling of face and mouth or tightness in chest - Not subtle - will occur immediately and chemo would be shut off and affects reversed in infusion center (low risk for any of this)

Measuring Response to treatment:

• Scan will plateau when CA has shrunk (tumors will stop changing in size)
• Scan schedule: 1st yr = scan every 3 months

                                  2nd yr = scan every 4 month

                                  3rd yr = scan every 6 months

• If Herceptin stops working as effectively (years down the road): Tykerb (Lapatinib) given orally with Herceptin

Staff:

Dr. Seidman - Oncologist

Doreen - Nurse

Michelle - Secretary

Major differences between providers:

Dr. Volm - NYU	Dr. Seidman - MSK
Will perform physical exam weekly- prior to chemo	Will see you in person twice in next 3 months – (will be followed by nurse Doreen instead)
Weekly treatment for 3 months until repeat PET scan and then taper to 3 weeks on/1 week off	3 weeks of treatment/1 week off starting now
Taxol/Carboplatin/Herceptin	Abraxane/Carboplatin/Herceptin
Recommends Powerport placement	Recommends weekly IV placement
Didn’t discuss further MRI studies at first visit	Recommends MRI of lumbar spine to document baseline

SERIOUSLY????!!!!!

Well, there's no way to sugar coat this so I won't.  My PET scan revealed spread of disease. That's the doctor's nice way of saying-spread of the cancer-to my liver, many lymph nodes, part of my pelvic bones and parts of my spine.  This classifies the cancer as stage 4.  Now if you are offended by swearing jump down to the next paragraph or better yet skip this post all together because I need to get Brooklyn right now.  ARE YOU FUCKING KIDDING ME, PEOPLE?  This is me.  Elisa.  I don't get cancer much less the really bad, terribly serious kind of cancer.  It just doesn't suit me.  Heart disease.  I could see that in my future with all my emotions running wild, but cancer? Or diabetes.  That's a likely disease for me.  I have PCOS and it's in my family.  But CANCER? No way.  Give me a break.  This is fucking ridiculous.  Fuck, shit, mother-fucking, what the fuck? AHHHHHHHHHH.  

Sorry but I needed to get that out and I'm sure there is more coming so I apologize if I offend anyone's sensibilities but I have cancer so fuck your sensibilities.  As one of the nurses said to me yesterday when she heard that Nathan and I have cancer at the same time and were diagnosed 9 days apart, "This is some shit!" It is.  It is beyond absurd to me. 

Besides, the swearing, I am virtually speechless.  "What?  What? WHAT?"  That's all people can say to me and that's all I can hear in my head.  "What?" I only have one plan right now and that is to dive head first into denial and stay there until I can figure out my escape plan.  Perhaps if I just get on a plane to South America I won't have cancer.  If I can just get out of this place, I can leave it behind.  It's all a big mistake.  Each step of the way, they have been talking about someone else.  It's not me.  This is NOT my story.  Fuck the plane, I need to run.  Get out of my way.  MOVE.  I gotta run.  I just have to runaway.  But I can't.  Sadie.  Nathan.  Nathan and Sadie.  This can't be.  This can't be their story either.  There is only one option; the treatment works. I survive.  I thrive.  This can't be Sadie's story.  There can only be one ending to this because I didn't go through a horrendous pregnancy, 39 hours of non-medicated labor and delivery, a broken vagina for 9 months post-delivery and no sleep for the past 17 months not to get to watch this beautiful child grow up, graduate, travel the world, speak six languages, win So You Think You Can Dance, solve the Middle East peace crisis, cure ALL cancer, invent an app for teleportation, find the perfect partner, have kids and grow old.  I mean it is a lot of pressure but I know she can do it and I'm not watching from the nose-bleed seats in the sky.  Hell no.  I want to be here on terra firma.  I totally believe in an afterlife, a very beautiful and well-populated one.  But I'd like to have this life for many more decades before I get my passport the "other side". 

I am so mad.  I am so sad.  I am ________.  I don't know.  I don't who or what I am.  How can this be going on inside my body with no symptoms?  Besides the lump in my breast, I'm as healthy as a horse.  If someone put a gun to my head I could probably run a marathon.  It would hurt but I could do it. I look and feel perfectly healthy.  Okay, I could lose the 20 lbs I still haven't lost from my pregnancy but come on.  My hair is longer and healthier than it's ever been.  My nails are even long and manicured.  It is not me. 

I know I will have to get around to accepting that it is me and rather quickly so I can "fight" this but I hate that.  I hate all the "you're going to fight this", "we're in this fight together" crap.  Really?!  What am I fighting?  It's a ghost.  I'm fighting a ghost.  It's lurking in my body but I can't grab it by it's throat and punch it and kick it and yell it and punch it some more.  It's a part of me.  It's embedded itself in me.  I have to trust that the drugs and the poison they're going to put in me knows how to fight a ghost. 

Okay...I'm sure many of you are wondering about the practical side of things.  I am pasting and copying below the notes my cousin, Rachelle, took during the consultation with my oncologist, Dr. Matthew Volm.  By the way, big shout out to Dr. Volm.  This man is an incredible healer and teacher.  I am so thankful to be in his care.  However, since the news went from bad to worse, I am going to take the advice I gave to Nathan and would give to anyone else and I'm getting a second opinion at Memorial Sloan-Kettering.  I told Dr. Volm that I would be seeking a second opinion at MSK.  He not only said that was it was the right thing to do but he gave me the names of a couple of doctors he knows and respects there.  He also said that if I preferred to get my treatment at NYU but MSK was conducting some study that I wanted to be a part of he would partner with them so I could do both.  He had no ego about it and even offered to put in a call Monday if I was having a hard time getting an appointment quickly at MSK. 

Volm wants to start me on chemo immediately.  I am scheduled to have a mediport like Nathan's implanted early Thursday morning and then have my first treatment that day.  They will be pairing my chemo with a drug called Herceptin.  My cancer is HER2-positive.  Actually, that is part of the good news.   I'm sorry.  I was dwelling on the negative earlier but there are a lot of bright spots in this diagnosis and prognosis.  HER2+ breast cancer is the most aggressive form of cancer but now there are drugs which act as antibodies and can easily and often very successfully attack the receptors on these cancer cells.  The other good news is that my lungs were clear which means my brain is clear. Hey, that gives me an idea.

I am going to buy a huge poster of the anatomy like they use in medical school and learn all the parts of my body: every organ, every bone, every vein.  I'm going to thank all the parts that are in good working order every day and then I'm going to instruct them to put peer pressure on the right boob, my liver and my affected bones to get with the cool crowd.  I mean all the cool organs are healthy.  Don't youuuuuu want to be healthy too.  Just try it.  It won't hurt. Hey, I'm going to try everything at this point.

Back to the treatment.  Most of it is in Rachelle's notes.  I'm sure there is more to say and talk about but I'm pretty tired and going to take my morning nap.  I'm regressing to a infant-like sleep schedule.  For all of you who are worried about calling or emailing or texting, don't.  Call, email, text, comment on the blog.  Whatever.  I may not be able to get back to you for awhile but I really love all the outreach.  And don't forget about Nathan.  He still has cancer too. 

I love you all.

YU - Dr. Volm - Friday, March 4th, 2011

PET Scan: Spread to liver and bone = Stage 4

Cell Type: Her2 + (only 20% of breast cancers) - excess growth factor causes cancer cells to grow

                Estrogen receptor negative

Treatments:

         Herceptin:

• antibody 
• engineered to attach to growth factor receptor 
• targets Her2 cancer cells 
• given with conventional chemo
• Side effects: 1% risk (very rare) heart problems - therefore need baseline echocardiogram to document current heart function and follow-ups throughout course of treatment

  Chemo: Taxol & Carboplatin

• Side effects: Hair loss (mainly scalp), mild nausea, decreased WBCs and therefore decreased immune system and increased risk of infection, peripheral neuropathy (tingling in hands and feet), periods will stop, hot flashes, fatigue

Plan:

1. Place Powerport next Thursday 3/10
2. Start chemo: Taxol/Carboplatin  - given weekly
3. Start Herceptin - given weekly with chemo
4. Echocardiogram to establish baseline heart function
5. Repeat PET scan in 3 months to assess response to treatment

Notes:

• Need good thermometer in the house (temp > 100.4 F call Dr. anytime)
• Disability: Dr. V will support and provide all necessary medical documentation
• Heart scan (Echocardiogram) will be done initially and then every 3 months while on Herceptin
• 75% response rate to Herceptin in patients with Her2+ breast CA
• Modalities to increase WBCs if drop too low: Neupogen, etc...
• It is Neutrophils that are decreased therefore infection would most likely come from self so: wash hands, wash fresh fruits/veggies, etc. No salads or uncooked produce at restaurants - stick to cooked veggies while out.
• Sick contacts should not cause illness - no need to worry about Sadie in daycare spreading germs 
• Surgery no longer a role - may consider down the road if good response to chemo
• BRCA testing - no emergent testing necessary - may help Sadie in future
• Long term - lifetime treatment with Herceptin 
• Expect chemo for at least one year but likely more
• Expect to spend 1/2 a day getting chemo once a week at first and then taper to 3 weeks on/1 week off, etc...
• Will see Dr. V once a week at first while he carefully monitors progress

Tips:

• Can use tea-tree oil for nails to keep them moistened and strong

Staff:

Oncologist: Dr. Volm - Hours: T/Th/F

Nurse Practitioner: Peggy

Receptionist: Joyce

Next appointment: 3/10/11 Thursday - NYU

*Early am Mediport placement - Will receive a call the night before with scheduled time but expect 7:30 in Tisch building (33rd and 1st Ave)

*Start Chemo and Herceptin same day

 

It Takes A Village

My dear friend Marcos Feliciano told me yesterday that, "it takes a village to fight cancer, but you got a city." Based on the last two weeks, I can attest that the outpouring of love and support certainly substantiates that statement.  We are truly blessed by all the folks who have come to stand with us in this fight.

Nathan and I will never ever be able to express the depth of gratitude we feel for all that is being done on our behalf during this time.  And it is a testimony to you, our loved ones, when we find out that, for example, one of our friends' cousin's aunt's church is praying for us.  It is a testimony to you because that means they honor the relationship they have with you.  Please take a moment of gratitude for yourselves to see that the love coming to us is often coming through you and that means you are a conduit of love and kindness and generosity.  We are blessed to have you in our lives.  This is a perfect example of ripples of love.  And if there are any positive side effects to having cancer, feeling waves of love coming from all corners of the planet is definitely one of them.

Please keep sending the emails, texts, comments, cards, etc.  They buoy are spirits immensely.  Some of you have asked if there are any other practical ways in which to help at this time.  I am learning to accept help, which I thought was one of Nathan's life lessons but, apparently, it is one of mine as well.  Therefore, in an effort to practice "accepting help", I wish to guide you to contact Lara Bianchi at laratbianchi@gmail.com or Laura Gentles at laura.gentles@gmail.com.  They will keep you in the loop. 

Again, we are forever grateful for your love, support and assistance.