Vic's on a roll: Birthday Update

Hi too all
I woke up suddenly tonight at 3:46 AM. I remember this well as 29 years ago I was awaken at the same time because Nancy's water had broken and we were going to have twins!  It is a day I will always remember.At 9:15 Heather was born. No complications, everything was going great. then Hillary decided that there was plenty of room now that her sister was gone and just wanted to hang out a while. 31 minutes later, what seemed to be a lifetime, Hillary was born. Yes she had a few issues. The nurses and the 4 doctors that worked on Hillary all remember that day. Dr West, who is a great friend till this day, calls me every year. She was his toughest birth by far. 
Hillary's apguard score were 0,1. Kind of like a computer code! 0 is no breathing or heartbeat taken at birth. 1 is for breathing on a respirator at 5 minutes. She had a crushed skull from the high forceps. We were told she was a 1-1,000,000 birth with a prolapsed cord. That evening I can still see the look on Dr West's face as he told us "not expect much from Hillary." Brain damage was expected. She was transferred to Dartmouth- a place now that she visits a lot!
Needless to say she fooled everyone.!! Not only did she recover, she excelled. She has had a will to live right from the 1st day. She was born with it. We could only nurture it. 
We continue on our wild ride to this day. Hillary had a 2nd opinion on thursday last week In New York City. If you know Hillary by Now she was going to make an event out of it. Wednesday is free day at the Bronx Zoo. Jon Xander and Hillary had to go visit the tigers. Then she contacts her friends from college of New Rochelle. 6 women, most with kids, drop everything to come to visit Hillary for dinner at the hotel. I call it the meeting of the UN as they are all different nationalities from different areas of the city. She always get positive energy from these friends.
 Hillary got another opinion from a research specialist at New York University. Dr Oconner is doing trials for a drug- not chemo- that has been 75% successful in curing Hodgkin patients that have not been helped from chemo. A new trial opened at noon on Thursday. Hillary's appointment was at 1:30. She got into the study! Yes we have new found hope!!! We always thought that if she could fight long enough that research would come up with something new. Nancy and Hillary are headed back for her 1st treatment on Thursday- Our anniversary.
Last friday Hillary needed day surgery to put the stent  back into the kidney. The Cancer is growing so fast that it is already shutting off the connections. they placed a metal stent instead of plastic because of the tumor growth. She has rested and slept most of the last few days. She has to save what energy she can so she can make another trip to NY and keep fighting. The  drug has not been toxic to any of the others in the 1st trial. It shows improvement in about 3 weeks. Chemo had been almost immediate in the other 12 times that the cancer had come back. I hate the fact that this is #13. But that is Heathers favorite number so I think their bond is stronger than my superstition. 
So we have new hope. We cling to the fact that she has been a fighter all her life. we especially cling to the help, prayers and support that are friends and family have given to us. Our emotions are being held together with string and love from all of you. We thank you very much

Vic, Nancy, Grace and Patrick, Heather, Allen, Pierce and Preston, Jon, Xander and Totally Hillary

Crunch Time

I knew I shouldn't have gone out this am. I was still recovering. My head ached. I was peeing every 10 min. I wanted to fall asleep. 

My chest kept rattling with phlegm, a little souvenir from my intubation fri. It's now monday. You'd think my mind would have recovered. It hasn't. 

With age, multiple surgeries and illness suseptability increases. I'm trying to raise the yellow mucus out of my chest while not vomiting and keeping my eyes open.

 So why would I think I could drive?!  Because meds do that to. You feel capable, a little cocky. You know you're sick, you know you feel awful but add a naggy unhappy 8 year old who wants to hang out with his "best cousin" and won't shut up mentioning it until it happens, you don't know what your capable of.

X even told me not to fall asleep driving before we left, but THAT wasn't going to have to happen.

What was going to happen?

My head was going to pop. I was losing control. Too much sensory information. 

I turned onto Pearl St., where I'd been directed to go, but it was actually Prospect st. I called the babysitter who gave me some more directions and the exact address and description which should have been enough. 

I knew I was in a tizzy, but driving safely with my son. I wasn't speeding. I wasn't doing anything "crazy" except talking on the cell phone trying to get directions not completely paying attention. Yes, I was a total fault for not stopping.

But that one misstep of going to a weird "p" st. sent me onto a bad path. I was on the phone with the babysitter driving straight like I thought I should go when I heard "turn around". 

Exasperated, frustrated, I put the car in reverse seeing the smooth driveway on the right never seeing the ditch on the left. Crunch!! Half my car went over a 3ft brick wall, the other has fine, safely on the driveway.

 I was frustrated. How can I fix a car now? I sobbed in my head.

 I never lost my cool, But i did get tearful. 

I'm lucky to have such strong helpful men who make sure I get through the day. J and Dad came to my rescue faster than AAA could have. C and X were all ready to do it themselves enlisting the help of neighbors. I had to tell them we were fine.

 They lifted my car up. I drove it slowly back onto the rode. My dad took it from there, driving x, c, and me safely home for lunch!! 

A near crisis averted, again. I think my car is safe, no damage done.

No man stands so tall as when they stoop to help a child. - Ab Lincoln. 

Reminiscing: I was a Princess (Really)

Growing up, you may believe this or not if you knew me, I wanted the "princess life." I wanted the whole idea. I wanted to live in a castle with nice jewelry and loving people who helped care for me.

I have no idea how this jumped on to my "To do" list, right next to go to College in NYC. I was independent. I had goals of being a successful independent NY career woman, but I didn't see why I could have both?

Those two items severely limited where I could go to school. I  wanted a castle in NYC. 

Who would have guessed? Just like everything in my young life, I got what I wanted. It wasn't an exact fit.

The College of New Rochelle was an "All Girl's School" that didn't allow male visitors over night.

Eck.

It also wasn't in The City or near a subway station.

Instead it was in Westchester and close to Buses to the Bronx or the Metro North Train to Grand Central.

I didn't mind learning with All Girls. I had a huge grassy campus with trees.

What I wasn't excited about was the strict Catholic Rules that students still had to abide by, especially curfews with men in the building, but that didn't matter since I was with J, I had my Prince Charming, and the campus was filled with castles. Even the new buildings were built to mimic the 100 year old ones that were there before.

They were all decorated in an old- wealth victorian style full of velvet, stained glass, hand carvings. 

OF course, that wasn't the only thing that made me a princess during college. Ingredient numero uno was Prince Charming, and though I didn't know it at the time, though I made him work hard, I had my Prince Charming taking care of me.

 Last week, Going to NYC, we left a day early to New Rochelle, the suburb of NYC where I went to college. 

It took me back for the years BC, before cancer, when we were a young couple healthy, in love with all our hopes and dreams in front of us.

 We were going to conquer the world.

We don't reminisce about our hey day often, but I vividly recall being treated like a princess. How did I get the Princess treatment from J?

Valentine's day freshman year made every girl on campus jealous of me when J sent me a dozen roses of all different colors every hour on the hour for six hours!! 

There were so many my room mate would claim them when I was out. The floor smelled like a floral shop. I was the envy of all girls at my all girls school. Even the hotshot, senior sorority leader who only got one blue rose. I was even tracked down for delivery in chemistry class. I don't know how he worked it out.

 As if the one gesture wasn't big enough, J'd visit me for the weekend every 3 weeks, and we'd go out in the city doing whatever, whenever we wanted to, because we were young and free on the verge of fabulous high paying careers.

 He took care of my cell phone and gave me a credit card "just in case," even though I was fortunate to have supportive parents who were paying my tuition, food, gas, insurance, costs, etc. I wanted to make supporting me as easy as possible for everyone.

Being taken care of by J and my parents, I was such a lucky young woman. 

We had worries. X came earlier than planned. J changed his work schedule, lived between our parents houses while I commuted. We both new it would be worth it. 

The plan was for me to graduate, possibly finish a master's degree to be a nurse practitioner, then J could go to college full time if he wanted to. 

J and the parents had our house was built and ready to move into when I graduated. I didn't have to worry at all about the building. All I had to do was approve the layout.

We thought we had all angles covered, every problem solved. 

I was going to work as an RN for one or two years according to the guidelines of most mater's nursing programs. 

J decided to go to school part time and enjoy it. Things were settling down. I was given some of the best years ever then!

It was great remembering with J and having the blanks filled in by friends this past week.

It's hard to go back there, because we all know where the story veers off a cliff. I remember taking a sigh of relief and thinking, before I got sick, what's going to happen now?

We'd gotten past a huge obstacle and were finally looking toward the good days we'd busted our asses for.

I'm lucky I had my Prince Charming for the good times, but I'm even luckier to have had him to support me through our never ending hard times. I know I'm among a lucky few that gets to have a truly committed relationship. I can only thank Jon for that.

Happy Birthday J

I'm Going back: It's NYC for Me

My body has revolted. It has ruined three perfectly good immune systems causing me years of frustration and pain. Now, this body knows what it wants. It wants a change. It wants a whole new fresh approach. It wants something new. It wants SGN- 35. It wants to get back to NYC. It wants....... The yankees!! 

I've done a 360 in these past 5 years. 

I am back with NYC. I moved out Aug 2004 and couldn't stay away.

 I'm back, officially, for treatment there every 3 weeks at NYU with Dr. O'Connor on 34th St.

I'm also back with my homegirls from college. I'm at ease. I'm relaxed about this decision. Our trip down went near perfect (as near perfect as forcing an 8 year old to sit still for 5 hours). X was amazingly well behaved. He's such a young gentlemen.

Maybe being back in my second home with my friends will help me remember all the good times I had, we had. 

It's on, I'm going back Weds. to spend the night, getting an hour treatment Thurs., then staying until Fri for "observation."

I really hope "observation" means meeting up with friends.  I'm feeling confident. 

We were able to hit up The Bronx Zoo on Weds, free day.

My favorite animals at the Zoo were people. People of all shapes, sizes, colors, ages, with a even more diverse array of accessories and languages. 

Yeah, I liked people watching as much as I liked the apes, who decided to be our dinner entertainment. 

We found a quiet shaded table in the corner thinking we'd found a piece of paradise on free day. 

What came 5 minutes later was chair side gorilla play, which a loud group of young girls decided to scream about bring legends of attention around us.

BOO!

There goes the peace. 

Come Weds next week stay at "The Shell Horn." My  infusion is 1pm Thurs. I'm taking Sgn-35, an Antibody drug conjugate to the CD 38 marker on hodgkin cells. This medication targets the cancer with a chemo warhead "aurostatin" straight to the cell with little toxicity!!

It can avoid toxicity because it targets only the malignant cells, not the healthy ones. YAY!

It's given every 3 weeks by IV over an hour with the most common, problematic side effect being neuropathy!

Ha! I've had that for years, but I've also heard that story before.

This time I pray it's true. Please, everybody pray too. This could put me into remission for a while.

It's amazing how one facility has nothing new but bad news and another, 250 miles away, is the perfect fit.

The FDA approves aurostating aproval sep 1. 

I locked a slot in  an EAP trial where fda makes drugs in the approval process available to market. 

The trial started at noon on Thurs! My appt. was at 1pm.

There are other things easing my mind: Hope lodge on 34th W. Side is FREE! 

I don't quite get how or where to park yet. Three days in the city would be ridiculous.

I did forget my medicare card and DPOA paperwork. NYU has Jon and Nancy as contacts. 

This hospital is much more friendly than Sloan, which had me crying at registration after I realized my wallet was MIA.

 In all the stress and the chaos of that trip in April 2008 when I sought my first 2nd opinion, the stress of me getting two kids together and overseeing three adults and trying to coordinate a play date with my bff and train times, I dropped my wallet in the hotel room. 

I didn't notice until I was registering. 

I thought I'd been robbed. 

I cried and the registrar looked me straight in the eye, smacks her gum and says, "you need to pay $800 to see the doctor as a self-pay." 

The waterworks came but her stone face didn't change. 

Dad tried to come to the rescue, but I wouldn't allow my Dad to put it on his card. We'd never see it back. 

I got my insurance numbers, but no card. The receptionist's nice deed was letting me through with those and a promise to fax copies later. Then when I was leaving, she was complaining loudly about how, "it was one of those days."

That chick has no idea what one of those days is like if she's denying cancer patients treatment.

This receptionist was a 100x better. She kept reassuring me when I realized my medicare card was missing! Imagine that. 

 NYU didn't have to do too much persuading. They had me at "valet." If I come in solely for an appt. it costs $20 for 8 hours to park. That is an NYC deal!

Quick Date

We've made it back from NYU where I have been accepted to start the SGN-35 trial next Thurs. Back to NYC next week.

Today I'm getting my stent placed at DHMC to keep my ureter open and my kidneys from feeling, but I'm excited. My trip to NYC gave me a lot of hope. SGN-35 was approved by the FDA last week and will come to market Sept. 1. While the red tape is being processed, I'm on a trial that always patients to access medications that are in the process of approval by the FDA.

This trial opened up at noon yesterday.

My appointment was at 1:30.

Things just seem to be falling into place, even though Dr. O'Connor actually got around to see me at 3pm. Yes, refractory hodger's everywhere. I've joined the ranks in so many ways.

He blushed when I told him he was famous among patients on the internet and highly recommended. I could have gotten the SGN-35 as early as Mon, but I need some time. Everything is falling into place so fast. In all my years as a patient I have never had anything flow so well.

As a perk of treatment in NYC every three weeks I'll get to bond with my college buds. I was able to see 6 of them Weds! But even better, once it's FDA approved and available, I can get SGN-35 at Dartmouth!! Close to home.

Our prayers have been heard. SGN-35 has a 75% success rate! Keep praying though. I've hardly dipped my big toe in this treatment.

If I May Be So Bold: Can You Help Me?

If I may be so bold, I'm in a time of crisis. Times don't get much worse than the time when your diagnosed and running around searching for the hospital/doctor/treatment/trial that may or may not save you but will definately make me sick, increase expenses and turn my life into chaos. 

During these times, I am inspired by the offers of support in so many areas. Knowing so many people love me and will take time out of their lives to ensure my family and I are taken care of touches and melts my heart even during the deepest depression, after the worst news. Love is how I can fight all these battles, keeping a smile on my face. It's all you people!! I feel like I'm being lifted up on your shoulders. 

Miss manners never covered the etiquette of asking for help during crisis. I don't want to be needy. I don't want to be rude but I need help. I want to talk about our true needs. 

I'm going to the down dirty basics of healthcare/ nursing/ etc., to the true needs/wants of the patients. With any cause or improvement, There has to be a goal and who knows, maybe happy patients with good outcomes will not only make a great goal but will help fix a broken system? 

Who knows, but I hope this needs list can be useful and relevant for others. 

First and foremost: Rides are needed. These are always the most difficult because the trip is 35mi and the appts are often long during work time hours. Sometimes you will see me get sick, but you do get to spend a quality day with me :) getting an up front experience, and usually, free massages! Yay who wants to sign up for this! 

There's also room for a whole community to group together and rally, forming a consistent carpool schedule that people can join, pay into maybe with rural transit. 

Also always, I need help getting organized at home and staying organized! When I get sick my energy levels change and stuff needs to be moved to make my life easier. I need assistance with my closet and jewelry area so I can keep dressing and creating while disabled.

 Closet chaos is awful with cancer. It's tiring to shower and change. I want to be able to find clothes without exhausting myself. 

Being available to watch/play with Xander is always so important.We've all spoken and want to stay being as happy and "normal" as possible. We want him to be happy and having fun while I am away sick.

 Some lifelong family friends, who were ages 4, junior high and high school when their mom died of leukemia, say they only remember the happy times. I want to keep the good times coming.

 Also, FYI, if I offer a play date, it's because I feel well enough to enjoy it or j or someone is with us. If you still feel uncomfortable, don't make the date or communicate (love open communication) and we'll make an easy exit plan. 

Offering to cook is always appreciated. It's even better if it's something the family likes and eats like chicken fingers,roasted chicken, chop suey, spaghhetti, meat loaf, mac 'n cheese. 

Aluminum dishes are great so no return needs to be done. It'd be perfect if someone could organize all the offers of what people offer to cook so we can know we'll eat well without having to throw away.

 Sending us meals/foods ready to be frozen would be a gift that keeps on giving. Sending fresh food from the garden would be great. I love cucumbers, but don't have the energy to access the grow a row program. I can't even cut them myself.

Realistically, there is a flutter of assistance when the diagnosis is (re)new then it fades. Help with organizing my health care contacts support systems with name, numbers, emails and what they can do when would be amazing. 

I'm still trying to find an app for that. 

And yes, we always need money. We have a financial Plan Z and we're on it. Mortgage the house vs. keep going claim bankruptcy? I'm out of the financial planning. If you're able, send a donation. If you're uncomfortable with cash, gas cards are great, walmart cards, food cards anything that will help provide us with our needs while we figure out how to move forward.

Every little gesture in helping is meaningful, a phone call, email, or comment helps remind me why I fight. I need reminding that I do good and contribute to the world. I need to know I'm more of a benefit to society than a drain. One of my favorite helpful activities cost nothing: Feel free to send comments as a way to help. I love words of encouragement to keep me fighting.

Thanks so much to everybody.

If I may be so bold: Can you help me, please?

If I may be so bold, I'm in a time of crisis. Times don't get much worse than the time when your diagnosed and running around searching for the hospital/doctor/treatment/trial that may or may not save you but will definately make me sick, increase expenses and turn my life into chaos. During these times, I am inspired by the offers of support in so many areas. Knowing so many people love me and will take time out of their lives to ensure my family and I are taken care of touches and melts my heart even during the deepest depression, after the worst news. Love is how I can fight all these battles, keeping a smile on my face. It's all you people!! I feel like I'm being lifted up on your shoulders. Miss manners never covered the etiquette of asking for help during crisis. I don't want to be too needy. I don't want to be rude but I want to talk about our true needs. I want to write about the helping utopia I am imaging, saying if everything was perfect this is what I'd get. We all know life is far from perfect. I'm going to the down dirty basics of healthcare/ nursing/ etc., to what are the true needs/wants of the patients are. With any cause or improvement, There has to be a goal and who knows, maybe happy patients with good outcomes will help fix a broken system? Who knows, but I hope this needs list can be useful and relevant for others. First and foremost: Rides are needed. These are always the most difficult because the trip is 35mi and the appts are often long during work time hours. Sometimes you will see me get sick, but you do get to spend a quality day with me :) getting an up front experience, and usually, free massages! Yay who wants to sign up for this! There's also room for a whole community to group together and rally, forming a consistent carpool schedule that people can join, pay into maybe with rural transit. Also always, I need help getting organized at home and staying organized! When I get sick my energy levels change and stuff needs to be moved to make my life easier. I need assistance with my closet and jewelry area so I can keep dressing and creating while disabled. Closet chaos is awful with cancer. It's tiring to shower and change. I want to be able to find clothes without exhausting myself. Being available to watch/play with Xander is always so important.We've all spoken and want to stay being as happy and "normal" as possible. We want him to be happy and having fun while I am away sick. Some friends, who were ages 4, junior high and high school when their mom died of leukemia, say they only remember the happy times. I want to keep the good times coming. Also, FYI, if I offer a play date, it's because I feel well enough to enjoy it or j or someone is with us. If you still feel uncomfortable, don't make the date or communicate (love open communication) and we'll make an easy exit plan. Offering to cook is always appreciated. It's even better if it's something the family likes and eats like chicken fingers,roasted chicken, chop suey, spaghhetti, meat loaf, mac 'n cheese. Aluminum dishes are great so no return needs to be done. It'd be perfect if someone could organize all the offers of what people offer to cook so we can know we'll eat well without having to throw away. Sending us meals/foods ready to be frozen would be a gift that keeps on giving. Sending fresh food from the garden would be great. I love cucumbers, but don't have the energy to access the grow a row program. Realistically, there is a flutter of assistance when the diagnosis is (re)new then it fades. Help with organizing my health care contacts support systems with name, numbers, emails and what they can do when would be amazing. I'm still trying to find an app for that. Every little gesture in helping is meaningful, a phone call, email, or comment helps remind me why I fight. I need reminding that I do good and contribute to the world. I need to know I'm more of a benefit to society than a drain. Feel free to send comments as a way to help. Now you know some words of encouragement to keep me fighting. Remember, you are all the heroes and inspiration in my life.

Even in shock, amongst all the brain chaos, there's always a soft, delicate, calm voice in the background, thinking of facts, hatching a plan. I start planning before the test considering options. I always have. I met with Dr. G the next day. It was a family treatment meeting. My parents went with me. G started off with telling us I no longer have any single agent or one type of chemo treatment available. I've used the proven safe ones. I can only move on to a harsher treatment that's given in-patient over days causing SYMPTOMS like easy infections and baldness. Bad news out first. I okayed that then mentioned I'd like to see. DRUMROLL PLEASE Dr. Owen O'Connor @ NYU!! If you're not familiar, Doc O has been recommended to me many times over the years. I didn't think it was time then. I wanted to stay close to family. Now is time. Dr. O does a lot of research on resistant hodgkins patients specifically. General at this point most trials are testing for all lymphomas and both hodgkin's, but he may have something specific for my disease type even. He's hope. One other hodger I met through the blogosphere or talkosphere also had refractory hodgkins so aggressive it was growing out of the skin on her chest and her area doctors had told her to go home, lay down, and enjoy her last 6 weeks. She said no thank you. She wanted to see her son grow up too. One of Doc O's trials put her in remission for a year and a half!!! She only had to go to nyu once every 3 wks! Say excited prayers. This could hapen. And all this was decided and put into place amidst the chaos of enjoying time with fam, phone calls, organizing. I'm in NY now. Still anadventurer