The Good, The Bad and The Chemo

I don't know.  I don't know what to write about anymore.  Since our story went "viral" last week I feel a little trapped in my mind.  This blog was where I was processing.  It was already difficult knowing that people I love dearly would be reading my inner most fears, learning more bad news and having to endure my sailor-esque vocabulary but I made a conscious decision to not censor myself and Nathan supported that.  It was also the easiest way to communicate with those people what was going on without having to repeat ourselves a hundred times which in and of itself is exhausting.  But now I feel even more exposed.  Who's reading?  Do they expect something of us?  Screw it.  I can't worry about other people.  I've got bigger fish to fry. There's a lot to say about the last week and this may only be a partial recap of what's been going on.  It's 4 in the morning and I'm not sure when I'll run out of steam.

Nathan and I are deeply, deeply grateful for and in awe of the global outpouring of love, support and inspiration.  I mean literally GLOBAL.  Who could ever have seen this coming?  I guess it's happened before.  Wait, I know it has.  Sometimes people receive a lot of attention for doing nothing other than finding themselves in a seriously shitty situation.  The Chilean miners come to mind.  It's just that you never imagine it's going to be you, or rather, we never imagined it would be us.  None of it.  We never imagined one of us having cancer.  We never imagined both of us having cancer.  We never imagined both of us having cancer at the same time.  We never imagined our family and friends rallying to our side with one goal in mind, a happy ending.  We never imagined that that goal would be shared with people all over the world.  And we never imagined we would feel so blessed for all of it.   That's the thing about shitty situations.  They can give you more blessings than the burden itself.  They can teach you more than you wanted to know.  They can heal you beyond your pain.

Don't get me wrong.  If I had the choice for Nathan and I NOT to have cancer, I would take it.  In a heartbeat, I would take it for Sadie's sake, for our parents and for all those people who love us and worry about us.   We didn't choose our diagnoses,  but we do choose to be in a state of gratitude.  There is too much love and healing coming our way not to feel blessed.    

So I guess I would say that emotionally/spiritually we're in a really good place.  As for our physical states of being, we're still looking for improvement.  Warning: If you're squeamish, skip the rest of this post.  My first week after treatment was truly awful. I was puking and had diarrhea for 6 days straight.  I was afraid to be more than 2 feet from a bathroom at all times.  In between trips to the bathroom, I made sleeping an Olympic sport.  To add insult to injury, I got my period.  Yes, my period.  Even though I was two weeks late (no doubt due to a mild case of stress) and the fact that menstruation should cease during chemo, I got it 3 days after my treatment.  I blame the super moon.  I just wish I had know it was coming because I was experiencing extreme pain in my lower abdomen and lower back and the fear took over.  I cried to Nathan, "It's spreading."  That's the problem with a metastatic diagnosis, well, one of them.   Every pain I feel throws me into a panic.  I worry that the cancer is spreading further.  So in a way, I was relieved there was clear cause for the pain.

On Thursday, I was due for my 2nd chemo and I was feeling much better but my blood work showed that I was extremely potassium deficient.  It should have been a short session because I only received one of the 3 drugs they are giving me, the Abraxane, but then I had to stay for a 2 hour infusion of potassium.  The potassium definitely helped.  Since that treatment, I have only suffered from fatigue, some intermittent abdominal pain and a new normal of diarrhea but overall not too bad. 

On Friday, Nathan had his 4th chemo session.  He got the results of the EKG he had been wearing for 24 hours after his scare the week before and they looked normal.  They performed another EKG just to be sure and again it was normal.  Because he had experienced severe neuropathy from the last round, his doctor decided to reduce the amount of oxaliplatin he would receive and also give that infusion over a longer period of time.  Unfortunately, only one of those things happened.  He got the reduced amount but the infusion was still 2 hours instead of 4 hours long.  A mistake was made.  Overall, it was not a big deal but by the time he got home Friday evening the side effects had already started.  To recap, the side effects he seems to suffer from the worst are: sensitivity to cold, any cold, which includes the air, tingling in his fingers, the sensation of his tongue being swollen and burnt, pain in his salivary glands when he begins eating anything, pain in his tear ducts when crying, fatigue, abdominal pain and constipation.  It's also a pain the ass to have the take home infusion.  Yes, it's definitely a medical advance to be able to provide the take home infusion because it works better that way - something to do with the half-life of the drug - but then you have to be super careful when holding your kid or hugging people, you have to sleep on your back and you can't take a shower.  It's "convenience" seems to cause a whole lot of other inconveniences. 

It's morning now and we both got a decent night sleep though I have been up since 4 am writing this post.  I definitely need to eat some breakfast, though I'm not hungry.  It's crazy.  One side effect I forgot to mention that I am experiencing is a lack of appetite.  I'm not talking about being nauseated and, therefore, not wanting to eat.  That's a whole separate side effect.  I'm talking about a real lack of appetite.  I just don't get hungry anymore.  But don't cry for me Argentina.  Unlike Nathan, I have more than a few pounds to spare.  In fact, if nothing else, I'm hoping I'll be in great shape for a bikini this summer.  And I won't even have to figure out the new points system on Weight Watchers!

A week in review

Encouraged by the former English teacher who said she would have given my last post an A (as well as all the other wonderfully kind comments I received), I am here writing another one. I can’t make any promises about the quality continuing, however. I still wish that it could be Elisa writing again, as I love reading her work. It never fails to put a smile on my face, a tear in my eye or a laugh in my belly. However, she has been having a very rough week since her first treatment and has been too sick to write. She is finally getting a little sleep next to me now.

First, I want to say how overwhelmed we both are by the amazing people that we know and many that we don’t know, who are reaching out to us with such wonderful messages of support. Those messages of inspiration and encouragement really mean a lot to us. Additionally, Elisa and I are just stunned by the fact that our friends and family have started a website to collect donations for a trust fund that has been set up to help offset some of the financial burdens that we are facing. Since neither of can work right now, this is a major stress relief for us. I cannot begin to express how grateful we are and how moved we are by the generosity and love that we are receiving. Thank you all. Thank you so, so much.

Next, let me bring you up to date since the last post. Friday morning didn’t start off well for me and I was a little concerned that I was going to have to head into the hospital on the first day of nice weather in weeks. I was having some rather intense intestinal pain. I was not so much surprised by having pain, since I have had that since early November; more it was the intensity of the pain that took me by surprise. It felt like a hot poker was being dragged around the inside of my gut. I don’t actually know what that feels like, but I am guessing it couldn’t hurt too much more. However, this is not why I knew I was going to have to go to the hospital… this is just why going to the hospital was going to be that much shittier. I was going to have to go to the hospital because I was having irregular heartbeats, or palpitations. Various heart conditions are one of the possible side effects of chemo, so the doctors always want to know if anything strange is going on with your ticker. I actually had first felt them on Wednesday, but there were just a couple, so I paid them no mind. However, Thursday night they were continuous for up to ten minutes and they kept happening all morning. So I called the doctor and was told I had to go directly to the urgent care center. Doctors are so predictable!

So began the day of tests. I was hooked up to an EKG to monitor my heart, which of course, had stage fright and preformed perfectly normally for the first half hour. Eventually they started seeing the spikes. They were not sure what was causing them; all the blood work came back “normal” (for a chemo patient, that is – they would keep you in the hospital if your blood count was as low as mine is for no reason). So I was off to get a CT of my chest to check for a blood clot in my lungs and they threw in an x-ray of my abdomen to see what was causing all of the pain down there.

 Results: my chest was clear (sigh of relief) but I was full of shit. Literally. My whole intestinal tract was like the Holland Tunnel at 8:45am.  So still not knowing what was causing the heart palpitations, I was sent home wearing an EKG recording device that would monitor my heart for 24 hours. There is still no word on what they have found from that information. They said that the beats themselves were not dangerous. My heart was firing a beat too early. "Could be stress related," they said. Not sure what could be causing that! So finally we were back home by 5pm. Elisa, my brother Joel and I were just exhausted  from anther long day in a hospital.

 That night Elisa suggested that we go stay at her good friend’s apartment, who had just gone out of town that morning; we wanted to be able to have a day of quiet and calm and at least be out of our apartment for a change. It is near Central Park, so we thought we might even go for a walk in the park. We planned to drop Sadie off at her mom’s around 9 AM. By 1PM we were out the door and heading to the city. Life never seems to go as planned. The afternoon started off ok, but Elisa started to feel the effects of her chemo from Thursday kick in. I am not sure why, but the worst days seem to start a full day after your treatment. She was feeling nauseous and was having a lot of muscle and intestinal pain plus a headache to top it off. We tried to get her to eat a little dinner and it seemed to help for a couple of minutes…before we discovered that we have only thrown another log on the fire. She got worse as it got later. Around 8pm we took her temperature. She had a low fever. When you are being treated with chemo, a fever of 100.4 means you go to the ER.  So we kept a close watch, taking her temperature every ten minutes. Unfortunately it is rising fast and within a half hour we are up to 100.1. So I put a call into the doctor and wait for the call back. During this time I become convinced that my heart palpitations are stress related as they have kicked into full gear. We get the call back from the doctor and predictably we are told to go to the ER. We start to get or selves prepared to leave. Making some calls to see who might be able to come help out at the hospital as it would not be healthy for me to stay there all night with her. I really start hating my cancer at that moment. By the time we are dress, packed up and ready to walk out the door, Elisa says that she is not feeling quite as hot and maybe we should check her temp one more time before we go. That woman has great instincts! Her fever has dropped some. We decide to hold off leaving and take it again in ten minutes in the hopes that the fever is passing. Jackpot! It keeps dropping in about an hour it is back down to a mild fever. We make the call not to send anther night at the hospital and just keep a close watch on her temperature for the rest of the night.
We called our friends and cousins in the medical field to make sure that this is not foolish and we got the “ok”. If only all the other symptoms that Elisa was having would have passed, too. But they remained and we are now on day six of her feeling terrible. Nothing seems to help with the nausea. Some of the pain meds they prescribed help temporarily with the muscle pain. Sleep is fitful. Nothing seems to help. It makes you feel so powerless, so inept at not to being able to do anything. So I fetch water, help her back and forth from the bathroom, stroke her hair, and hold her when she cries. I am grateful that I am having some better days at the moment and can do all this. At the same time I, we, both know that this is probably not always going to be the case.

It is a little overwhelming to think about us both feeling sick like this at the same time for the next several months. We are so lucky that my brother has been staying with us for the past week and helping with everything.  So lucky that Elisa’s mother is close by and able to come over whenever we need an extra hand. So blessed by everyone who has been making wonderful food. So blessed to have an amazing friend as a neighbor to handle the receiving of the food, holding on to it until she knows it is a good time to bring it over. We are lucky to have our friends and cousins who have been picking up and dropping off our darling Sadie on the days that she has day care. There are so many daily things that have become more difficult to carry out, and this love and support is so immensely helpful and appreciated.

Elisa has her second chemo treatment tomorrow and I have my fourth the following day. We are both a little nervous. This will be our first weekend together having both had chemo.

Port O' Princess

There are some things that you can expect to be a little different about this posting as compared to the past posts: a lack of brilliant wit and creative writing, poor grammar, poor sentence structure, over use of comma's, the possible misuse of verb tense, and if I forget to press spell check, a rash of misspelling. Why this sudden digression? Because it was written by me, Nathan, Elisa's husband. One of the many ways in which Elisa is my better half is her wonderful talent with the written word. So my apologizes in advance. Elisa had been asking me for a while to contribute to the blog, which I emphatically declined. I told her that would be like asking me to go run next to Carl Lewis.  However I felt that I should pick up some of the load on this one, as it was a day about Elisa. Yesterday was a very big day. A very long, physically and mentally exhausting day. Elisa had her medi-port ( Elisa does a beautiful job of describing what this is in an earlier post ) placed in her chest and received her first chemotherapy treatment. Up until today ( and here i can only speak for myself ) Elisa's cancer had a ghost like quality to it. It was all words and reports and slides. There was no pain. No symptoms. There was no way, other than the lump in her breast, that her body was telling her that she was very sick. Not anymore. Yesterday a physical aspect of it was added. Everything became much, much more real. She will now have a physical reminder, 24/7, stitched into her chest. And it is not going away anytime soon. This was difficult for me to see. It was difficult for her mother and father to see. It was even more difficult for Elisa to have done to her. (I really hate that one of the side effects of my chemo is that it hurts to cry. )

So bear with me as I take you through the day.
We were at NYU from 7:20 am until 7:30 pm.
Yesterdays entourage consisted if Elisa, her mother Eileen, her father Al and myself. After checking in we all headed to the radiology waiting area. Around 8 we were taken in to the patient prep room where a nurse went over the procedure that was about to happen and what to expect. The actual procedure for inserting the port is very quick, you are back out to recovery within the hour. So after changing Elisa was led to the OR and the rest of us were relegated to the waiting area. Just about an hour later she was out and in the recovery area where we had to wait until 11 for or scheduled transport ambulette to take us from the NYU hospital to the NYU cancer center where she will be getting all her chemo treatments. During the wait, Elisa was finally allowed to eat a little food. Unfortunately her body was not so keen on that and she became very nauseous. Never fun, but even worse when you are exhausted, just had a foreign object stuck in you and are  hooked up to monitors and an I.V. They were able to give her some meds to help with the nausea and soon she was feeling back to good ol' exhausted and achy.
The transport arrived about 45 min late and we headed over to the next stop.
I would like to take a minute to say how amazingly kind and courteous our ambulette driver was. His good nature cheered us up and we felt a little better by the time we drove the five blocks the the cancer center. Thank you Harold.
First stop was blood work. Then upstairs to have a consult with Elisa's oncologist. We had a ton of new questions that we wanted to ask based on some of our research and Al had a whole list of his own to ask. Dr. Volm took the time to answer everyone with the gentle and clear manner that made us a big fans of his from our first meeting with him. (I am going to try to speed this up, if anybody is even still reading at this point).
Next stop was chemotherapy. We all scarfed down a sandwich while we waited to be called in (thank you again Eileen for going out to get those!). Once we were taken back and given the quick tour of the facilities (very nice if you were wondering) we were led to the room that Elisa was to receive her chemo.  Luckily she got one right next to a big window and sun was pouring in. Elisa was soon napping like a cat in a sunbeam. 10 minutes later they came to start the first of the set of three drugs - Herceptin. Like most drugs, there are usually a long list of side effects that one can have, but most people don't get. Herceptin is no different. Only it is very uncommon to have a reaction. But as you all know by now, my wife is special. So about 2 minutes into the infusion her body start to tremble - a sign of a reaction. Of course nausea comes with it too. Oh, and did I mention that now the local anesthesia from her port placement has worn off? Needless to say this makes for a pretty shitty combination. So Elisa is feeling horrible. I feel horrible watching this. This is really starting to suck. They give her Benadryl for the reaction and Atavin medication. Both make you drowsy. They give her only Tylenol for the pain (let me tell you, having just had one put in a couple of weeks ago, these people are out of their minds when they say that it won't hurt that bad).
But the combination of the three drugs have a great effect and Elisa falls into a deep sleep for the next four hours. Dr. Volm comes up to check on her when he is told about the reaction she has had. The good news is that this could mean that the drug is working right away. The bad news is that there is a slight chance she may have the same reaction during her next treatment as well ( you know how we love our slight chances). Fortunately after the next treatment (which will be next Thursday) there will be no more reactions to the Herceptin.
The next several hours pass by without event thankfully. Elisa even sleeps through all the medicine changes, a nutritionist consult, several nurse visits, port care instructions, and discharge instructions. She wakes up for the last hour and we are finally free to go. Al drives home in an hour and she eats a little and crawls into bed.
So there it is, Elisa has started her chemotherapy treatment. I was about to say that she has started fighting her cancer, but she started doing that from the second that she was told her diagnoses. She has been fighting it with her amazing positive outlook, her courageous sharing of her feelings on this blog, her gracefully acceptance of the weight that has been placed on her shoulders and her wonderful and abundant humor. And there are so many others who have been fighting it with her. With your thoughtful e-mails and letters.  Your prayers and the positive energy you send us. The food you make for us. The rides to and from treatment. The time you spend with us in your hearts and minds and in our home. I am grateful to you all beyond words. I am grateful and proud of my wife beyond measure. We will keep fighting this. Together. This cancer will not beat my wife. Will not beat my family. Will not beat this city of people that has risen up and surrounded us with it's love.

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.

Quick Update-Nathan

This will be a very brief update on Nathan. 

NATHAN:
Nathan had his first chemo treatment on Friday, February 25th.  It took 2 1/2 hours to administer via IV.  The nurse who had administered the treatment, Aladeen, was wonderful. He took a lot of time to explain all the side effects that could be associated with this particular type of chemo.  It was the 3rd time that day we had heard about the side effects but Aladeen spent the most time explaining them and really approached it as a lesson.  Nathan is so happy with his choice to be treated at MSK.

Unfortunately, some of the side effects they told us to expect came on strong right away and there are others we can't explain.  The strangest expected side effect associated with this chemo is a sensitivity to cold.  Nathan cannot drink, eat or touch anything cold.  He can't even pull anything out of the fridge with his bare hands.  Do you know how many things are cold?  How about the air in NY right now?  Just walking home from the car that evening, his face was on fire.  Yes, the cold translates as a burning sensation.  So no ice in his drinks, no food still cold from the fridge, no cold water when turning on the tap to wash his hands, etc.  I swear it's the small things like this that can drive a person insane. 

Strangely, Nathan's tear ducts and salivary glands also seem to be reacting adversely to the chemo.  The doctors have never heard of these areas being painful but Nathan is special.  As you might imagine this will probably prove to be very inconvenient.  The man does need to eat and tears are cancer's constant companion.

Of course, to be expected was fatigue.  Nathan spent much of the weekend in bed and thankfully less time in the lou.

By the time the effects of the chemo were starting to wane, Nathan had to have his Power MediPort put in his chest on Monday.  He is now recovering from the pain of the implant.  He isn't allowed to lift anything heavier than 10lbs for 10 days.  Since we haven't given stats on Sadie lately you should know she is 27lbs.  So sadly he isn't able to pick her up for another week.  Again, it's the small things most people take for granted (like being able to pick up your child when she says,"Dada, uppa") that cause unexpected pangs of grief. 


Friday, Nathan will be meeting with Dr. Segal in the morning and then having a second round of chemo via IV.  Even though the power mediport has been implanted it needs to heal completely before they can start using it to administer the treatments.

In the next post, I will give a quick update on me.

Thanks for continuing to check in.