Hope from Vivi Herself

Vivi in her Happy Place: Mahopac

Hi Everyone,

My mother is now quite a few months into treatment at the Bruckner Center. This miracle of a place which houses two brilliant doctors, a team of passionate nurses, and a family of patients, all from varying backgrounds of life and cancer, all who travel near and far to seek something that other places could no longer offer them - hope.

Hope. This is exactly what my mother and our family have been able to regain for the first time in a long time. There is now hope. Great hope.

It is still hard to wrap my head around the fact that - just a few months ago - I sat across a table from our doctor at Sloan Kettering holding my mother's hand through the toughest news she would have to hear since her original diagnosis - the battle was over. The cancer had won. The treatment options had run out. Time was officially going to run out sooner rather than later. Much sooner.

It is even harder to wrap my head around the amount of people that have walked out of similar meetings - at similar and equally respected institutions - and accepted defeat. I waiver somewhere between sadness and anger when I think about how many lives that have been unnecessarily lost to cancer because people either aren't informed or aren't encouraged to keep fighting.

I must note that we know as well as anyone - after three long years of this endless battle - that there are many days when the thought of all of it just being over is actually a relief. People's spirits and bodies are so beaten and broken by a certain point, that the notion of no longer needing to muster up strength that they don't have is a gift. If my mother had walked out of that meeting (and I half expected her to) and had simply said "enough" - I not only would have accepted it, but I would have supported it.

However, she didn't - and she didn't have to. We are part of the lucky few who have access and resources to know that there are options beyond conventional treatment and artillery yet to be discovered to keep going and keep fighting. With her new armor in hand, my mother chose to keep going. She chose to fight - and now we can say - she chose to win.

My mother had her first CT scan after receiving her new treatment a few weeks ago and I could not be more thrilled to inform you that she is officially back in remission!!!

Does this mean the battle is over? No. Does this mean that life is back to normal? Far from it. Does this mean that we are out of the woods yet? Not even close. Do we now have a reason to be hopeful? Absolutely.

As you all know my mother is an incredibly beautiful writer (if you didn't know before, you will now), and since I was not able to be present for the results of this scan, I encouraged her to write about the experience herself - as well as share some of her journey over the past few months with you.

So, I will let my mother - the beautiful Diamond Warrior herself - take it from here. However, I want to encourage all of you to please spread the word on this amazing place - The Bruckner Center. They are working true miracles. Unfortunately, the majority of us are touched by this horribly cruel disease in one way or another - so I ask that you help those who you may know that are fighting their own battles to keep fighting - even when they think they have run out of ammunition.  There are more options than you think - you just have to seek them out. So - KEEP FIGHTING! KEEP DIGGING! KEEP PUSHING! FUCK CANCER!

As I said earlier, too many lives are lost to cancer, and if I can help save even one by writing this pithy post - this all will have been worth it.

With that said, here is a very special treat from Vivi herself. Please note: my mother asked me to edit this before posting, but I told her I would not. Grammatical errors aside, I wanted you all to hear Vivi's voice straight from her heart - as it should be. I would also like to note that I have many pictures to share, and promise to post them soon, but will leave you with just these words for now:

Hello everyone! I'm actually writing this after 2 days of intense chemo. Why? Who knows. I'm doing this while downing a brioche drenched in butter and orange marmalade. Next a magnolia cupcake and then a home baked choc chip cookie. Yum! I'm alone at the kitchen table and there are no staring eyes piercing me with that "this is no way to eat" look! I think fuck it I'm going to enjoy this. It's hard enough to eat after treatment as it is although all the steroids that get poured into me before chemo put me on a stomach high! Whatever that is!

Anyway back to the blog. I really wanted my sweet girl Aly to do this but she is up to her eye balls in work and new ventures that she insisted I try but promised to edit and add photos. She is such a damn good writer I simply cannot fill those magnificent high heels!!

As you now know we are in a different place and truthfully it's been an amazing experience. Full of courageous  people from every corner of the earth of every background race and beliefs. A real family of man. A place that is the salt of the earth and this disease that haunts so many is right there. In front of you. There is no escaping it. Some are sick beyond anything you could imagine. Some less. But there we all are in an open chemo room. Large and quite comfy. Each one always gets their own chair. I tell them I sold a diamond to get just the one that suits me best! Right by the bathroom where everyone passes me and many stop to chat. I've met the most amazing astonishing people fighting with everything they have to stay alive. One young man in his 20s comes all the way from Israel. He has brain cancer. Another wonderful woman I met yesterday comes every 2 weeks from Florence with her son. She speaks no English and we spoke thru her son who does. She also has ovarian.
So here it is and dr Bruckner walks around greeting patients and many take his hand and kiss it. Yes I'm one of them!!

I just finished my 7th round there and it's not for the faint at heart. I have one more to go and then he promised to re negotiate how he would handle the treatment. No idea what that means but I've begged for the summer off or at least a reduction to some extent. We shall see. That's alys favorite expression!

About a month or so ago I had my first Bruckner scan. I was scared shitless needless to say. It was at a new place and in the Bronx!! What did they know? Am I such a hard assed New Yorker? I was expecting a crowded place with a long wait time and didn't really want to go at all. Well it was the best experience of any I've had so far. The nurse who took care of me was this handsome dude from Jamaica with long dreadlocks. I could have run off with him and when I tried he said he would too but first I had to get this radioactive dye put into a vein and then sit still for an hour while it took and cooked. Then I would go thru a piece of machinery much like an abbreviated tunnel lying still as a cat waiting for its pray for almost an hour while they took hundreds of pics from my head to my knees. Luckily the guy doing the test would come in and tell me how much time I had left while I clenched my teeth and sang to myself. Finally it was over. Then the wait. That awful wait. First to see if they needed to re do anything then to get the radiologist to review everything. 

Suddenly some one came and told us that he needed to see us. Us was morty Aaron and myself. Never go to these things alone! I froze and refused to go with them so they went to his office and I stayed back in the little waiting area shaking and sure that I was doomed for good. I wanted to flee when all of a sudden another patient came close to me. Took my hand  rubbed my back and began praying over me. Chanting actually. I wasn't sure what to do. She kept telling me all would be ok but I couldn't hear that because I was numb with raw fear

Then there was morty. Waving to me. Both thumbs up. Jumping all around. I thought he was drugged as well. He had to drag me down the hall into a tiny office with a large sort of X-ray all lit up. I couldn't look at it. I clenched my eyes and began to cry. The news was good! The scan was clean! No evidence of disease! I still didn't hear it. "she's in shock" he said. "I see it all the time. The battle to win over this disease is too intense and exhausting and she can't fathom it. Will take time. Lots of time."

I went back to the clinic right after and saw dr Bruckner. He told me I got an A plus and said I should leave the office as I was too healthy! A joke of course I was sure. But he has a great sense of humor. My nose was bleeding at the time and he replied when I asked what I needed to do not to walk on a white carpet!  

So there you have it. But the fight goes on. This is when you push even harder to keep it away and he assures me there are lots of tricks up his sleeve. Again we shall see. Not sure what lies ahead and it's still very scary and courage doesn't always stay with me. But one step at a time. Brick by brick as they say.

For now? Where's that handsome dude? Ha ha. My 36th wedding anniversary is coming up. Aaron and Kelly are going to have a baby and Aly is getting more beautiful everyday with lots of great things happening. So I have to go on to fight. To never give up even when it's unbearable. To embrace my fabulous incredible priceless gem of a family and all of you who continue to travel this journey with me. I love you all and together we need to keep saying "fuck cancer". Or at the very least bump into a handsome dreadlocked Jamaican who you just want to hug while he says "it's all going to be ok". Now if I could only own that!!

From the Great Diamond Warrior, Herself!

Hi Everyone,

We received results from a test today that may just be an indicator that hope is, in fact, truly on the horizon. Vivi gets a regular blood test that measures her CA125 - which is an indicator of growth in ovarian cancer cells. The test has proven to be rather unreliable at times, but still, it is one of the only measuring tools we have - other than opening her up! In any case, the test came back showing VERY low numbers - 27! Just to give you an idea - this test read 2800 when she was first diagnosed, has maintained itself between the high 60s and 100s over the last few years, and anything under 35 is considered normal. So a 27 is VERY hopeful indeed!

More importantly, it has reinstilled hope in my mother - offering some extra strength to continue along this death-defying journey! With that said, my mother was moved to share some incedibly inspiring and beautiful words in a note she asked me to send along to all of you.

So from the woman herself:

To all of you who have loved me and held my hand and shown undying support. Who have carried me up and beyond the most treacherous journey I will ever know. To all of you who have listened and read the amazing blog my magnificent daughter Aly has continued to bring to you. To all of you who make my heart sing and bring me forward every second of every day. Whose hope has never stopped and whose embrace I feel all the time - I say thank you. It will make me survive. Hell, it will truly embody the words Fuck Cancer! So onward we go and still in battle on the front lines. Wounded. Weak. Exhausted. But ever grateful you are all in my life. It's the greatest gift and it will help me win!!

The New Normal

 After you read this blog post, look back at this photo! This was from a few weeks back, when we enjoyed a family ping pong night out! 

 Life Continues! Vivi, Morty, and Butoh! 

My mother making hospital time look very glam after we decorated her IV pole with Christmas ornaments!

 Our new motto: "Fuck cancer. Praise diamonds."

 Aaron setting up our Thanksgiving meal of sushi in the lounge at the hospital.

Hi Everyone,

I apologize for our/my lack of updates over the last few months. However, my mother's situation has been changing non-stop, that it's been hard to keep up with everything ourselves, let alone making sure I am keeping all of you up to speed. However, after some major changes in the last few weeks, I felt it was time to offer an update. It's a rather long one - so pour yourself a cup of tea, and find a cozy spot to sit!

As you are all aware, my mother underwent major surgery this past fall due to a severe intestinal blockage. The surgery left Vivi with an ileostomy bag, which I will spare you the details of - if you don't know what it is - but I will say there is nothing easy about living with one (she will have it for the rest of her life), and Vivi has been an absolute trooper through this major adjustment. Additionally, the surgery led to several other complications, all of which my mother has bulled through, guns blazing and diamonds blinging!

We spent the better part of this Fall at Sloan Kettering - where we could not have asked for better care from nurses and doctors who became extended family by early Winter. It's always comforting to be on a first name basis with the entire staff of a hospital you spend a lot of time in - until you realize that you are spending so much time in said hospital that you are actually getting to know these people so well. We even spent Thanksgiving night there, fabricating our own "family dinner"out of ordered in sushi in the lounge on the 19th floor of the hospital. We were still making that lounge our second home when the holidays rolled around, and we spent one evening stealing ornaments off of the Christmas tree to decorate my mother's IV pole. Strangely, while it was a stressful time for us all, there are a thousand memories we will forever hold from those months. And, per usual, we also walked away with many classic Vivi stories. Even when she is nearly on her death bed, only my mother can provide such antics and entertainment. Just to share a few:

As most of you know through my stories by now, my mother refuses to stay in the hospital unless she has a private room. This becomes her sole mission upon entering the doors of Sloan Kettering - no matter what her condition. Well, this time, it was taken to a new extreme. After my mother's initial major surgery, which was over 4 hours, and invasive to the point where I will leave the details of the nature of the surgery out - but needless to say, she was in for a long and tough recovery. Anyway, we have been through enough of these as a family at this point, that we have the drill down pretty well. 1-3 of us can be with her up until surgery. Then they send us to the waiting room (or down to the cafeteria if it's a longer surgery as this was) and call us along the way with updates. Then when surgery is completed, we meet with the doctor to get the full report, and are eventually let into the recovery room to see my mother once she is awake. However, these post-surgery visits are only 15 minutes, and from my experience are usually not very pleasant. Not only is it just tough to see my mother in such a state, but she is generally not very lucid and can only manage to ask a few basic questions over and over again (except for the one time when the nurse informed us that she was going on about how brilliant her son - my brother Aaron - was and then turned to me and asked if I was also family).

In any case, this was by far the hardest post-recovery visit I had experienced yet. My mother was clearly in a lot of pain, and could barely open her eyes or speak. However, we still had to go through with her wishes - that Aaron and I check on her while my father arrange with the attending nurses to make sure she be moved to a private room in the ICU. So we did just that. Aaron and I went to our mother's side, doing the best we could to comfort her, make her aware of what just happened and help her understand where she was. Meanwhile, my father went to speak to the nurse who was standing about 10 feet away from the bed. As soon as the words "private room" came out of my father's mouth, my mother's eyes shot open, she lifted her head, and very clearly shouted, "Ask for Domingo!" Mind you, Domingo is the man who organizes room reservations at the hospital and would be the most likely candidate to arrange for the private room. So while my mother didn't even know where she was, she sure knew exactly who she had to speak to in order to arrange her private room - wherever it may be!

Story number two was just before my mother's second surgery where they were putting a tube into her kidney to help it function better. Again, we went through our usual drill. However, since this was set to be a rather short surgery, my father and I (who were there that day), opted to simply wait in the waiting room. We knew we would get an update after the was put under, when surgery started, when surgery finished, and when we could see her. Generally, if you are in the waiting room, someone will come out and ask for the family of the patient. So our cue would be, "Teich Family". We then raise our hands and someone comes to update us on her status. We had, unfortunately, been in this particular waiting room several times over that week, so I knew the guy who was the "informer" quite well at this point.

However, all of a sudden, I hear a female's voice, but she was not asking for our family, she is asking for ME! I hear, "Aly? Aly? Is there an Aly here?" After looking around to realize there was not another family with the last name Aly, I apprehensively raised my hand, and was then approached by the woman who was clad in scrubs, and clearly an O.R. nurse. Needless to say I was rather confused, especially when she walked up with her phone out. She then informed me why she was coming to find me.

"Honey, I need to take a picture of you."
"Um, what?" I said, looking at my father who was equally confused.
"Your mother refuses to let us put her under until I take a picture of you."
"Okay, why?"
"She thinks one of our surgical fellows is cute, and wants him to see a picture of you before they start surgery."

While this may seem completely outrageous to the common person, if you know my mother as I do, you, too, would be conditioned to such moments. So without further question or hesitation, I smiled for the camera, asked the nurse if it came out okay, and continued chatting with my father, after offering a few quiet apologies to the other families in the waiting room. Only my mother:)

As I am sure you have gathered by now, Vivi did, despite a few hairy moments, walk away from the hospital and finally headed home. Life has certainly been a bit more challenging, and we have brought on some amazing extra hands to help with Vivi's care, but my mother is still forging ahead with as much of her Vivi zest that she can muster each day. However, the most significant update is that a few weeks ago, we made the decision to walk away from Sloan Kettering all together.

My mother went back onto chemotherapy after her surgery, and was set to have a scan to check her progress about three weeks ago. Unfortunately, the scan indicated that the treatment was not, in fact, working and her cancer was continuing to spread. Furthermore, our doctors at Sloan did not feel confident that there was much else they could offer my mother at this stage.

While it didn't come as a complete surprise, this news was certainly not easy to take. However, as a family, we were not about to give up - most especially my father - who right away set an appointment with an oncologist at Mount Sinai with whom we have consulted with throughout my mother's entire process. Personally, I wasn't all too hopefully that he would have anything further to offer, as he had seemed to be on the same page as our doctors at Sloan thus far. However, it turns out he did, in fact, have something to offer us - and something that sounded too hopeful to be true!

He informed us of a center in Eastchester called The Bruckner Clinic. They have done most of their work with pancreatic patients, as I understood at that point at least, and only had a very small group of 20 women they were treating with Ovarian Cancer. However, all 20 were either in remission or on their way to it (and their pancreatic patients - who under most circumstances don't live a few months at best - were living for up to 6 years!). See, too hopefully to be true! However, too hopeful or not - it offered just that - hope - and there is nothing else we can ask for right now.

So my mother is now on her second treatment at the Bruckner Clinic! While it has been a challenging transition to the new center (which is an hour away) and the new treatment, my mother seems to be getting through it and doing really well!

I call the treatment a "chemo cocktail".  She receives several types of chemotherapy at a low dose, all given over a 24-hour period of time, in combination with two drugs whose function is to rip down the defenses of cancer cells and help the chemo get in. She gets the treatment every two weeks, and she is able to go home in between with a pack that provides the drip overnight. So we are back in full battle mode, and have full hopes that maybe we can, in fact, beat this thing in the end.

In my next post, I will tell you all about the Bruckner Clinic, as I am still in awe of this place, but I think I have given you plenty to chew on for now.

Despite my lack of updates, you have all been, per usual, amazing and we would never make it through any of this without your love and support. It truly gives my mother, and our family, the strength to continue ahead down this long and arduous road. So we offer love back and a never-enough thank you from the bottom of our hearts!

Vivi Lost her Pipes

 Vivi Making an Oxygen Mask Look Glam

(Note: TWO DAYS AFTER SURGERY!)

 Rocking Scrubs in the ICU

 Dad Making Scrubs Look Even Better

 Aaron and Kelly Enjoying a Surprise Canine Visitor! 

Hi Everyone,

I apologize for the delay in my post-operative update. Things have been changing by the day, so I wanted to be sure I was giving full information before I sent out a proper update on my mother's status. At the very least, I am happy I was able to let you all know that she made it out of surgery alright.

Now I am happy to report that Vivi is recovery beautifully from, what turned out to be, a rather extensive surgery. As I told you before the surgery, we knew that Vivi had multiple intestinal blockages that were likely caused by growing tumors, however, we were also aware that we wouldn't really know the full scope of the situation until the surgeons opened her up. 

As mentioned above, the surgery turned out to be quite a bit more extensive than anyone had expected. This was due to the presence of excess scar tissue - both from her previous surgery and  extensive chemotherapy - as well as the fact that Vivi's cancer has, in fact, spread quite a bit around her entire abdominal area. These were the two culprits causing the blockages in Vivi's intestinal track. Due to the placement and nature of Vivi's blockages, the surgeons had to remove a significant amount of Vivi's colon and small bowel. While this may sound daunting there are two really positive take-aways from this:

1. They were able to perform the surgery in the first place. Many people in this condition are deemed inoperable - an outcome which would have not been very hopeful. However, we are lucky to have one of the best surgeons in the country, and Vivi's operation, although long and extensive, was a success!

2. The entire point of the surgery was to clear Vivi's intestinal blockages so that she could start eating again. When that much bowel is removed, there is always a risk that the patient will not have enough intestinal track left to actually absorb food. However (MORE GOOD NEWS), Vivi has plenty of plumbing left over and is already back on soft solids and holding them down well! Vivi will now need to be on a highly modified diet, but we are increasing her food intake by the day...and so far, so good!!

Unfortunately, due to the nature of my mother's cancer and the way in which it has spread, most of the metastasis was inoperable and will need to be addressed with further treatment. However, for right now, we are focusing on the tasks at hand - helping Vivi continue her nothing-short-of-miraculous recovery from the surgery, and making sure she continues to eat! From there, we will discuss what the next steps are in terms of her continuing treatment.

This has certainly been a long road - as we are heading into our third week here at the hospital - and have, what seems to be, quite a long road ahead. However, more immediately, if Vivi continues her speedy recovery - it looks likely that she will be able to go home on Friday!

Until then, we are finally back up on the cushy 19th floor in room 1928 - after spending a good portion of the last week in the ICU, followed by the SACU (Surgical Acute Care Unit). So I apologize I was not able to offer a room number until now, but they kept moving us around!

There are, per usual, many entertaining stories to tell from the last week or so, but I will need to leave that for another time. For now, I know that everyone was anxious to know how Vivi has been doing and wanted to make sure I offered an update. I promise to provide more color once we are a bit more settled.

Additionally, per usual, the outpouring of love, thoughts, wishes, and prayers has been nothing short of overwhelming. Even during our most trying of moments during this process, my mother and our entire family remain nothing but grateful for all of you and your incredible support. We are so incredibly lucky to be surrounded by such truly amazing friends and family.

As always, please feel free to reach out to me with further questions or concerns.

I'll be in touch soon (and do promise to include some more entertainment in my next post)!

All my love and gratitude and Happy October!

Aly

The 19th Floor

Hi Everyone,

I know I am long overdue with an update, but I wanted to let everyone know that Vivi will be receiving surgery tomorrow to correct two bowel obstructions that have developed. There are many outstanding questions that will only be answered once the surgeons are able to take a look inside and truly assess the situation. However, I will share with you as much as we know currently:

As many of you already know, Vivi relapsed for the third time this last May and began a new chemotherapy called Doxil. While Vivi was able to enjoy much of her summer - swimming in her pool, riding her horse, spending two weeks in the Hamptons, and even exercising (gulp) - she struggled with, what we believed, were the side effects of the chemotherapy throughout the entire summer.

However, Vivi was not showing signs of the normally reported side effects from Doxil - which, in most cases, causes skin toxicity. While Vivi did have to stay out of the sun for the most part this summer (well, more than usual), her skin was not her main concern. It was her stomach that was giving her the most trouble. My mother, who generally has a ferocious appetite, and more importantly, has been on a specialized diet since she was originally diagnosed - which she has not only thoroughly enjoyed, but we believe has likely been one of her best medications - started to lose her desire to eat, when she did want to eat, it was generally "easy" comfort food such as white bread, began to complain of stomach discomfort, and felt generally weaker as the summer progressed.

By August, Vivi was feeling so depleted that she was needing to delay chemotherapy treatments, and was finding even the simplest of tasks to be a challenge. Additionally, her stomach discomfort continued. However, after two CT scans and several CA-125 blood tests (for new comers, CA-125 is the marker in the blood that measures the growth of ovarian cancer cells), the cancer appeared to be reducing.

Fast forward to a week ago - Tuesday, September 18th - Vivi's birthday...

Vivi had received yet another positive CT scan the Friday before, but had to delay treatment again, as she was feeling sick. Come Monday, she started vomiting throughout the entire night and her body was officially rejecting any food or liquid. By morning, Vivi was admitted to the emergency room, not only vomiting, but complaining of sharp pains in her stomach, and bloating. All signs of a possible bowel obstruction, which was, in fact, the diagnosis after a long day of testing. So they admitted her to the hospital, and that's where she has been residing ever since. Luckily, since Vivi's past cardiac complications have not reared their ugly heads for some time, she does not need to be on a floor with telemetry (heart monitoring equipment), and can be on the posh 19th floor here at MSK, which feels more like a Hilton than a hospital (pictured above).

This is also where we, unfortunately, ended up celebrating Vivi's birthday. Although, it is moments like the one pictured above when you realize that it doesn't matter if you are enjoying a nice meal in a fancy restaurant, or eating cafeteria food and cupcakes out of a box - as long as you are with your family. Or so we keep telling my mother.

Some information about bowel obstructions and ovarian cancer:

Bowel obstructions are, unfortunately, an extremely common complication for Ovarian cancer patients. This due to two factors:

1. Most ovarian cancer patients undergo a major abdominal surgery early on in their process. This is called "debulking", as it removes the bulk of the cancer that is present near the onset of the diagnosis. However, the surgery leaves behind massive scar tissue on the inside of the abdomen - which can eventually press on, or even wrap around, the intestines - causing an obstruction.

2. Unfortunately, ovarian cancer tends to spread itself around the entire abdomen, and tumors are often found on the walls of the intestines. When Vivi was first diagnosed 2 1/2 years ago, the cancer was very far spread within her abdomen, and much of it was on the intestinal walls. So it is not surprising that during a relapse, her cancer has likely found it's way back there and is now pressing on the intestinal walls -  causing the blockage.


The cause for Vivi's obstruction could be one of these two scenarios, or possibly a combination of the two. In any case, obstructions are a complication as food cannot pass through the body and nutrients are no longer absorbed. Generally, and in Vivi's case, the protocol for treatment for a patient with a bowel obstruction is to put them on "bowel rest" (aka no food or liquids) and see if the problem will resolve itself. If it does not, which I'm sure you have guessed - Vivi's did not, then they must operate to remove the section of the bowel, colon, or intestine that is obstructed.

Unfortunately, we will not know for sure the extent of the surgery, or even the cause, until they actually take a look inside tomorrow. So I am going to hold off on that information until we know more as to not cause too much unnecessary speculation.

Things I can tell you:

The surgery will take place at about 2pm tomorrow here at MSK, and will take about 2 1/2 hours. Depending on the extent of the surgery needed, Vivi will likely need about a week of recovery, and then they are hoping to start her right back on chemotherapy. Whether she goes back on Doxil or on a new drug, will also not be determined until after surgery.

How is Vivi?

Right now - she's texting away - so I'd say she's pretty much normal! In all seriousness, it is moments like this when I am in true awe of my mother. She is just about as calm, cool, and collected as I could imagine anyone in this situation could be (especially after being cooped up in the hospital for a week). She never ceases to amaze me with her ability to stay focused on the challenge in front of her, and just deal with each step as it comes along. She is also being her feisty self - gossiping with the nurses, trying to set me up with any male doctor that enters her room, dancing along with her IV pole (pictured above), and doing everything and anything she can to ensure she keeps her cushy private room post-surgery.

What now?

As I have said several times over, we will have much more information after the surgery tomorrow evening, at which point I will make sure to send you all as thorough an update as I can. In the very least, I will let you know that Vivi came out of surgery alright!

We don't expect flowers or cards, but knowing the group I am writing to - we fully anticipate receiving them. So, to make things easier on our far-to-generous friends and family, the address here is:

Memorial Sloan-Ketting Hospital
1275 York Avenue
New York City
(Room for tomorrow unknown - I will send it out once I know)

I believe that is it for now. I apologize for my lack of usual humor and light heartedness, however, I wanted to make sure everyone was clear on the information - and, well, it's been a rather long week over here!

I promise to keep you all as up to date as possible. In the meantime, thank you for your continued love, prayers, thoughts, and general support. It's what keeps us all going and is something for which I fear we will never be able to properly express our gratitude.

All my love,

Aly

The Latest and Greatest on Vivi

Hi Everyone,

I am sure you can guess why I am writing a new post, as, this is the most efficient way for me to share news on Vivi - and there is, unfortunately, news to share. About a month ago, we found out that Vivi had relapsed for the second time. While the relapse is to be expected, as this is just the nature of ovarian cancer, per usual, we were all saddened and a bit taken back by the news - especially as this relapse happened quite quickly. I also think that even though Vivi's illness is taking a rather textbook course when it comes to timing, there is just nothing textbook about Vivi (in any way, shape, or form). Only Vivi can be in the middle of a battle with an extremely aggressive cancer and manage to remain as strong and vivacious as ever. Besides the fact that she happens to have a terminal cancer, Vivi is, by all other means, completely healthy. Something that I think makes all of this a little harder to wrap our heads around.

However, the reality is that the cancer is growing back again, and Vivi will, once again, begin chemo this afternoon. After an extensive search for alternative treatments, which included meetings and calls with doctors from literally all over the world (an effort lead by my incredible father), it has been decided that the best course of action in Vivi's case, which is technically, Stage 2 recurrent ovarian cancer (which means she has relapsed twice now), is to put her on a new chemo called Doxil. In the case of recurrent cancer, it is important to keep introducing as many new drugs to the body as possible, as the sheer fact that she is relapsing is a sign that she is already showing resistance to the other drugs she has already been given - and the more often she is given the same treatment, the more resistant her cells will become to that drug. So it is important to keep the therapies rotating, and give as much time in between the start of repeating a drug she has already received.

So Doxil is the clear best next step as she has not yet been given this drug, and it has also proven to have good results with Ovarian cancer if and when the patients take to it. However, there are some risks with Doxil. The drug takes about three months to start working, and can actually make the patient more symptomatic before it starts to attack the cancer. So we are hopeful (and have all reason to be), that Vivi will remain strong and healthy through the summer and that the drug will begin to work in three months time - at which point, we will have a better idea of where everything stands.

The new regimen: Vivi will now recieve chemo once a month (which is a much more manageable treatment schedule that those from the past). The side effects, while quite mild compared to some of the other chemotherapies Vivi has received, are not particularly "summer-friendly". The most prominent side effect of Doxil is that it causes toxicity in the skin. This can come in many different forms, but most importantly, Vivi will have to keep her skin out of the sun as much as possible, which will be a challenge for someone who so loves to spend her time outdoors - especially during the summer. Does this mean that Vivi will be on home arrest? No. She just has to make sure she is well covered with clothing and 85 spf if she does go outside (something that is likely routine for most of you, but if you know Vivi - she is a bit of a sun goddess). In any case, she will still be able to swim, ride, and enjoy the summer to the fullest she can manage in her long sleeve shirts - which have already been bought by the bulk! As you can see from the pictures I have posted, she has already managed to make the most of the start of summer, so we hope for a great summer ahead as well!

Per usual, I will keep all of you as up-to-date as possible. It is always hard to have to deliver these bits of news rather than the entertaining Vivi stories that are so much more fun to tell (and I promise I will be sure to offer up at least a few of those along the way).

Thank you all for the continued love and support, as it is both Vivi and our family's life line!

I hope you are all enjoying the start of summer as well and I will be in touch soon.

Aly

Round One: Done.

Dad and Aaron: Matching Doctors at the Hospital

Vivi Getting a Blood Transfusion (EEK!)

Visiting Vivi

Butoh Taking a Nap with Vivi

Hi Everyone,

Here is the latest on Vivi:

While we were all feeling undeniably defeated at the onset of the news of Vivi's relapse, we also knew this was a process we had not only been through before, but one that Vivi had already braved so valiantly. While last year was an exceedingly challenging year, we also walked away with an incredible amount of memorably hilarious moments, unforgettable time together as a family, and 576 more names to add to the Vivi Fan Club. So, with this in mind, very quickly, there was a collective sense of "we can do this."

The feeling only continued upon our first visit back at the hospital. Vivi had barely stepped one foot into the waiting room before she was mobbed by a hoard of people who could not be more thrilled to see her. It was almost humorous to see the conflicted looks on each of their faces as they could barely contain their excitement at the mere sight of my mother, but were also aware of the circumstances under which she was back at the hospital. It was equally entertaining to watch the reactions of the other people in the waiting room who had likely not received the same pompous welcome, and were looking at my mother clearly thinking, "Who the fuck IS this woman?" Certainly a celebrity in these parts.

Vivi was even up to her old antics, behavior at which I have no choice but to shake my head and think - yup, that's my mother! First we went through the old routine of getting her a private room. A process that - although requires hours of waiting and finagling - I am convinced, my mother would be willing to undertake even during her final breaths.

Later that evening, I was fortunate enough to witness another one of my mother's favorite hospital activities: Let's Fuck with the Nurse! The basic rules of this game are an unassuming nurse comes into my mother's room to ask some standard questions and run some basic tests, and about 30 minutes later the nurse leaves bewildered and exhausted, not understanding how a) a 70-year-old woman who just received a hysterectomy could actually be pregnant, and b) how she ended up spilling the entire story of her recent break-up with her boyfriend to a patient when all she was trying to do was get my mother's vital signs. While my initial reaction to this kind of behavior is generally somewhere between humiliation and shame, it is all worth watching my mother amuse herself to the point of laughing until she cries (or pees...it's often a toss-up) - something that is rather contagious if you are around her for such an episode! In the end, I can only think - good for her. If she can find a way to have fun, keep her humor, and lift her own spirits (albeit at the expense of other people's sanity at times) - all the power to you, Mom!

Even sitting here now, in room #1702 - a room we have spent countless hours, days, and nights in over the last year and a half- watching the rain spit onto York Avenue as the rest of the world unknowingly zooms by, and listening to mother's heart monitor machine beep rhythmically in the background - it all feels almost comfortably familiar.

However, despite our acquaintance with this hospital, this disease, and this process, it is, in so many ways, different this time around. You reach out with a bit more hesitation when you already know the hot stove is going to burn you when you touch it. Bottom line: to a certain degree - we just know what we are in for - for better or for worse.

Additionally, this round of treatment seems to be offering a very different set of challenges than we faced last year. While chemo is never easy (to say the very least), Vivi seemed to tolerate her treatment last year better than most. While the physical side effects were certainly tough, and often hard to endure - the most significant of which was that Vivi lost her hair, which is scary and shocking, but not painful, by any means - they certainly did not take the physical toll on her that this treatment seems to be doing.

Vivi is on a new chemo called Gemzar. The side effects of which are as follows:

• Flu-like symptoms (muscle pain, fever, headache, chills, fatigue)
• Fever  (within 6-12 hours of first dose)
• Fatigue
• Nausea
• Vomiting
• Poor appetite
• Low blood counts.  Your white and red blood cells and platelets may temporarily decrease.  This can put you at increased risk for infection, anemia and/or bleeding.

Not only has Vivi been experiencing all of these side effects, but to make matters worse, her low blood counts made her more susceptible to getting sick or developing a infection - which is exactly what happened this last week. Starting last Thursday, Vivi started to develop the flu-like symptoms listed above - and was told by her doctor to head to the emergency room. However, after running some tests, receiving some hydration, as well as some platelets, Vivi was sent home. Unfortunately, Vivi's fever continued to spike, she continued to feel worse, and this routine repeated itself for four more days until she was finally admitted into the hospital Wednesday night.

Long story short - not only had Vivi developed some sort of infection, but her red blood cell count was so low she needed to receive three blood transfusions to get her counts back to a sustainable level. While these types of side effects, as listed above, are expected, due to Vivi's cardiac conditions, these symptoms can be not only dangerous, but actually life threatening. When Vivi's body is under such stress, her heart starts to overwork, and while she doesn't actually develop a heart attack, this type of stress to the heart can be quite damaging - which in turn makes Vivi feel extremely weak and tired (likely an understatement if you were to ask her).

The good news is, after three blood transfusions, some IV antibiotics, and a ton (literally) of IV hydration, Vivi is feeling MUCH better. She even got out of bed, put some make-up on, and joined me for a few laps around the17th floor! She was even back to her feisty self, insisting that I was not offering enough entertaining details on the latest and greatest in my life, as well complaining about how much nicer the rooms on the 18th floor of the hospital (where she had spent the prior night) were, compared to the 17th floor - where she is now staying.

So - what now? Vivi is going to stay in the hospital and be monitored until her blood counts go back up and her EKGs (heart monitoring tests) read normally - at which point they will continue with her next round of chemo (which was originally scheduled for today). Her counts seem to be back to normal, but she is still waiting for the results of her EKG. If that reads normal, she will receive chemo tomorrow and will likely be able to go home either tomorrow or Sunday.

The question that remains is whether this was all due to some fluke infection that Vivi picked up during regular cold and flu season, or whether this was a bad reaction to the Gemzar. According to her doctors, it is likely a combination of the two. So they are going to closely monitor her through this next treatment and if the same symptoms start to arise, they will have to consider cutting back on her dosage of chemotherapy - as the routine she went through this past week is simply unsustainable. To answer a common question that has come up - will the chemo still be as effective if they pull back the dose? The answer is yes. Vivi is getting the maximum dose possible of Gemzar right now, which her oncologist decided to give her considering she tolerated her chemo last year like a bull. So they can still pull the dosage back significantly without changing the effectiveness of the treatment. Which is great news.

So we will see how this next treatment goes and I will send an update after that. In the meantime, please know that, despite a very tough week (likely our toughest yet), Vivi is really feeling so much better and seems to truly be on the mend.

Per usual, I would like to thank everyone for the love, support, thoughts, and prayers that have already poured in (and a special thanks to whoever sent the box of dark chocolate treats - they're my favorite!) - even just a few weeks into this process. I can never truly express how much strength it offers both my mother and our family as we forge ahead back down this road.

Happy Friday and happy Fall to all of you.

Until next time...