1 Month Ago

1 month ago. Feels like a year.

Here I am getting a blood transfusion. This was something I would like to get once a month. Made me feel strong and brought pink to my cheeks.  

A lot has happened in a month.

 Photo by my sis, Kelley. Blanket by a New Canaan Church - they knitted it for me! I call it my lucky blanket and I am reading one of my many sexy cancer novels.

Photo by my sis, Kelley. Blanket by a New Canaan Church - they knitted it for me! I call it my lucky blanket and I am reading one of my many sexy cancer novels.

Pics for Alix

The photographs in this slide show are incredible . . . truly. I feel blessed. Thank you to everyone involved. I will cherish these forever. I would love to make a book of these images where the proceeds go to cancer causes and creates checkup awareness.   : )

Woodwork

Even since I have been diagnosed, exactly 6 weeks ago tomorrow, people have been coming out of the woodwork. Ex-girlfriends, ex-boyfriends, people I met at a club once, people I don't know, friends of friends, friends I was not close to and the list goes on. It has truly been an amazing experience being on the flip side of things. As they say - an eye opener. Thank you.

People have been sharing their stories of how we met and nice opinions of me. I have heard some confessions and a few eulogies. People have put me in touch with other cancer patients, shared their stories with me whether the ending is good or bad and people have sent me scientific information and ideas for treatment. Thank you.

Friends that I was not close with have really shown their true colors. Reaching out to me daily, weekly and monthly. Then there have been a few closer friends that have not reached out at all. Kind of weird, I thought. But at the same time cancer might freak the crap out of some people. And my local girlfriends who have now become my soul sisters. Thank you.

This process has been crazy to say the least.

And I am thankful for all the crazy. The ups and downs, and all the information I am taking in with how cancer effects us all in different ways. I look at people so differently now. 

I would like to take this moment here on my soapbox and say a HUGE thank you to my sister.  For those that don't know her, you should. She is truly amazing. My sister and her family moved back to the states (NYC) in August. They have been gone for 20 years- living in Asia, Australia and London. It was like my lung was waiting for her to move back so she could take care of me. lol. She found my doctors, took care of me, signed me up up on juice deliveries, organized me for all my Dr. needs and was here for me every hour of every day. I hope everyone has a Kelley - she is the reason I am still here today. Thank you. I love you. 

Peace, love and light to all. 

PS - I bought a ton of records yesterday at a record fair.  I purchased mostly music I listened to in high school. I can recommend putting on high school albums when the kids get on the bus and playing them VERY LOUD while you do the dishes and laundry and clean. It is surely going to make you happy. (Risky Business) 

 

 

Vocabulary

Moringa, tumeric tea, chaga, manuka, flavonoids, carotenoids, phytochemicals, asparagus juice, fenugreek, turmeric & curcumin, frankincense oil, hemp oil, probiotics, sprouted ancient grains, chia, flax, daily juicing, sunshine, meditation, peace, prayers and of course crizotinib (aka magic pills) -  all words in my daily mantra.  

no dairy, no meat, no sugar, no processed foods.

Eastern & Western coming at you. 

Buh-bye, cancer. 

4 weeks until PET scan. 

 

Since I am taking a break from photographing kids I thought I would start photographing my intake. lol 

Ode to Paul

A turning point in ones marriage. It changed us forever. 

This moment.

Calling your husband on the hospital phone at 7pm on a Monday, crying and practically screaming through the phone, I don't have Tuberculosis...........they said I have Cancer. 

Paul said to me, "Don't worry honey. I will be right there. We will figure this out. One day at a time . . . just breathe, breathe . . . everything will be ok . . . we will figure this out, you will get through this, you are strong."  He continues to say those words to me everyday. 

We have always been a strong couple, but this solidified it.

I can't tell you how amazing he has been during this process. The words and the love just overflow out of his heart. Not once has he every complained about taking care of the kids, and me - so I can rest and then put 3 wild peanuts on the bus to school followed by sitting on a train for 2 hours to get to work in the morning - is amazing . . . not once have I heard a complaint. 

In 3 months. It will be our 10 year wedding anniversary. 

In 2 months. It will be 11 years that we have been in love. 

For those that don't know Paul, he is the guy that looks amazing in any clothing that he puts on. I think he was a fit model in a past life. He is a man of fashion and style, prefers all things in black. He is a quiet fellow but once you start to speak to him you know why he is that way. He's a thinker. 

When I first laid eyes on him he was dressed in a mod suit with a skinny tie and shoes that I approved of. I am a shoe snob. Anyway, he was the creative director of Marie Claire and I was a retoucher for the magazine. I fell in love with him first. All it took was Paul giving me instruction on how he wanted the color and images to look in an editorial spread - and I was done. Now I just needed to lure him into Alix's web. It took a while - but it was the night of Cinco de Mayo (fitting as I am  a Martinez now) . . . an award ceremony called SPD - and we were inseparable. 

Then the mixed cd's started happening, his were far better then mine and I was a music snob. Lunches started, then me sneaking to his floor in the Hearst tower to bring him a cookie and coffee at 4pm - cause why not - and then bam . . . we were officially in love.  The rest is History. 

Thank you Paul for continuing to slow this fast grasshopper down and calming me and also showing me that true love is in fact a thing. I love you, honey. 

 

 

 

Habits

43 years of habits, I am trying to break. Or more like 29. I think most of the bad habits I acquired happened when I started boarding school at the young age of 14. Lets just say, 3 boarding schools and 2 colleges later, I learned lots of very interesting information.  ; )  Some useful and lots not. And not to leave out my camp that I went to for 10 years that will always have my heart. (RBC!)

I did however pick up nutrition along the way. I have always always eaten VERY healthily. I would even pass on strawberries if they were not organic at the grocery store. I now think, maybe the poison in the strawberries would have kept the cancer at bay. But then I think that sounds really stupid. But yes. Very healthy.   

I think the unhealthy element of my equation is that I am a girl who likes to have fun. I am a very hard worker and a hard player as well. I am not the best with gray areas. It's either black or white. So the habits that I am now breaking are: coffee, lots of alcohol, lots (eek - I have German and Irish blood in me so have a very high tolerance), bagels, sugar and I love to dance (dancing will never stop). A little known fact . . . I was a raver for a minute. But I was more into the dance clubs/music/dancing instead of the glow sticks and pacifiers. This is where we would lose ourselves, my besties and myself, during the 90's. It helped you escape and it made you feel young again, which is hilarious since I was only in my 20's. 

Also, I could have better thoughts. Being more positive, less judge-y, more helpful and kind to less fortunate people and on and on. I do think of myself as a good, sweet Southern peach. But living in the North definitely hardened me a bit and also made me less passive aggressive. Now I just call it like I see it . . . or is this just a natural progression when you get older?  Hmmmmm . . .  

I have started meditation and visualizing the cancer moving out of my body. I am practicing positive thoughts - once I start thinking of something bad I think of something positive immediately. This will be harder than the cutting sugar and alcohol out of my system.

It takes 2 things. Well 3 including the magic pills. Healthy food, meditation and positive thinking to combat this illness, I believe, plus I have read it in every cancer book I have (12). 

I  have received so many cool and creative gifts in the past few weeks and there is a bit of a trend amongst the gifts: the old me. I am wearing oils again (frankincense & sandalwood help pain), Grateful Dead/The Doors/Violent Femmes records, hippie blankets, rocks to touch and Marijuana. All gifts that bring me back to boarding school . . . and thus we circle back. 

To Breathe...

It is Tuesday. 3.5 days into taking the medications. And I think I am feeling a tad better.

I can breathe in . . . ahhhhh . . . and not cough every time I take a breath. Yes, I seriously took breathing for granted. I will never do that again. Shortness of breath is the worst - it debilitates you.

I am hoping I will possibly have more energy now from all the extra air in my lungs.  Sleeping happens often right now. The drugs and shortness of breath combo make for a very chill day.  

Short and sweet . . . 

60º

It is Sunday today and 60º. I am tad more positive, which has been kind of hard to feel lately. I was thinking that day 2 of the pills I would be able to breath really well and feel like my old self. I'm thinking maybe that is more of a day 3 kind of thing. But . . . that sounds negative too. 

Pills have been brutal on me as I am forced to eat a lot, take other pills to make these pills keep the other pills down. How many times can I say 'pill' in a sentence. Pill. I am hopeful that my body will get used to the crappy way the pills make me feel as this is definitely better than the alternative. 

I keep hearing: "You need to stay positive" "You need to be strong" "You need to eat" and I want to curl up in my bed, just keep sleeping and pretend this has all been a bad dream.  

So . . . right now . . . in this moment . . . when I push the save & publish button, I will be putting on my tennis shoes, going outside and smelling the gift that we Connecticut people have been given today: warmer fresh air. Then I'll go take a small walk. I know being outside will help bring out the positive. 

Big love to you all - the gifts, donations, food, thoughts/prayers and cards have all been really helpful in my positive process to beat the cancer - and I have been in awe over all the love. Truly. Speechless.  

 

 

In & Out

The magic pills came in the magic car on the magic street from the magic pharmacy at 5:30pm Friday - I took one immediately.

Never have I been so happy to see something be delivered - Christmas in my mouth. 

2 hours later. The wrath of sickness came over me.  Oh no . . .  

30 min later . . . a first: throwing up in front of my kids. Our son, Lucas saved the day - he ran and got me a trash can and our 6 year old, Natalie looked at me like I was a science project. She kept commenting on the colors of my sickness. It definitely lightened the situation up a bit.

I was so disappointed. These sure were magic pills. So freakin' magical they can go in and out of your system that quickly. 

Game plan for the next pill: food. I need to eat more (so hard) and take the prescribed stomach pills they told me to fill at the pharmacy. I should have listened. I, for some reason, was thinking I had a stomach of steel. Nope! 

#chemopills #mustkeepdown

 

4:30am

4:30am-  and I'm a little hung over . . . on Percocet. A first for me.  ; )  I took an extra half last night. I guess since I've lost a ton of weight that was not the brightest idea.  

I should have chosen either lunch or whole foods with my mother yesterday - not both. I over exerted myself. Wow . . . times have changed. 

My neck was in a lot of pain (lymph nodes) from the breathing thing. It's hard to breathe and the right side of my body - I thought it was the adrenal glands as they lit up pretty hot on the PET Scan, but I think I just pulled a muscle from all the coughing. 

Speaking of coughing. I was doing a lot of that yesterday at Whole Foods. My tumor (Mrs. lemon)  whom you all know very well now . . . tickles my bronchial path and that is why I cough. I call her a little bit of a gift because she is the thing that made me go to the Dr. If she had not been tickling me and was located in another spot the cancer would not have been detected so quickly and would have probably spread further . . . eek . . . sorry - side tracked . . . back to whole foods. My coughing is so annoying. I think mostly because people look at me. Or I am just paranoid. I wish they would say: "Aisle 1 - Aisle 1 - girl only has cancer, she is not contagious with the flu!"

2 more days until I get the  pills. It will be a Fedex delivery as you cannot buy chemo pills, at least I think, at CVS. Very special magic factory pills - they don't want cross contamination. I was hoping to wake up on Saturday and all the pain has gone away and my breathing normally had returned. But I will take Sunday, Monday or Tuesday. 

There are so many messages on FB and in my email that I have not even gotten to -  videos and photos. I am waiting until I feel better - holding them to the side . . . like dessert. A sugar free dessert (I have read that sugar makes cancer grow). For those that know me, I am not the type of person to have messages to read. I cross things off to do on a list every day and get back to every email etc. So it is hard to see that I have multiple messages that I don't have the energy to get back to . . . yet. but I will and I can't wait. 

Thank you for reading. Going to try to go back to sleep now. My sweet husband is only snoring a little bit tonight. He is tired. 

 

 

Santa's Pill

Waiting for magic pills is like being 6 again waiting for Santa to come and you know he is bringing you - your first bike.  But you have the flu so it's kind of hard to be too excited. I know it is not the cure for my cancer but it definitely makes me hopeful that I will feel a bit more like myself soon and not feel the pain I am in. These pills will add years to my life and - the articles/Drs say - could possibly give me a chance to see my girls and my son get married and even have children! I tear up just thinking of holding their children in my arms. It is really the best news a person could get - 60-70% chance to live - yes, please! #lifechanging 

Every time I take a $157 pill I will be saying "Merry Christmas".  : ) 

And a HUGE thank you to everyone who has prayed for me or thought about me or sent good wishes and vibes. It is working. I heart you all. 

Great News . . .

Great news . . . and by the way, Happy Valentines Day!  : )

I went into Yale today to see Dr. Herbst- for my first IV fusion of Immunotherapy and they told me I did not need it today. What!?? 

The Dr's came in to the room with peppy steps and happy looks as if they had just high-fived each other before walking in. So . . . the biopsy came back . . . I have tested positive for a gene mutation called ALK, which is so strange because I have been watching the old show ALF every night with the kids. So I think . . . def meant to be.

Anyway . . . this is a great thing!! The Dr's were thinking I was not positive for the ones that were treatable. It is still going to be a long road of meds, scans and check ups . . . but I now have a greater chance of living!  

So . . . to be super simple with my words, as most of the Dr talk is so over my head - I get to take a pill. Yes, a pill. 2 times a day. Basically . . . forever. It has a 60-70% chance of working. Sign me up!! I love pills! FYI . . . Immunotherapy is around 45%, and chemo is 35%. 

This drug has a really good chance of working. It's called Crizotinib and if my body becomes immune to it they will switch me to other pills and continue on and on. And even add in radiation if needed. I will now need to take pills, meditate, eat really healthy, sleep, rest and pray that this drug works on me. I will go into Yale in 2 weeks and then 6 weeks for a scan to see if the cancer is shrinking. 

For those that are curious, the side effects of the pills are tiredness, nausea, weird light vision stuff, no grapefruits (random) and a bunch others effects. But It means I live (60-70%) so for now so I will take all the side effects.  : ) 

Now I just need that first pill to come on Friday ASAP to make the cough and pain in my body and shortness of breath go away. Buh bye lemon!

Lift your Valentine cocktails up high tonight and toast to pills, Yale and kisses! Double cheers!!

•If you have a moment check out all the gorgeous photographs (Photos For Alix) that were taken by some amazing photographers all over the country and world. Thank you, thank you! This was by far the best day I have had in about 4 months.

 

 

 

Smoke

I think all the time: how the hell did I get lung cancer? I mean, probably not the best direction to go mentally as I should just be going forward and focusing on the positive. But my brain needs life coaching to be fully positive or at least 75 percent more positive. So I had to put some words down. 

So. I will be fully honest here. 

1. I smoked Marlboro reds with the tomboys/boys in 5th grade in my neighborhood. First of all, no parents were ever around like they are now and I really don't think I inhaled. 

2. I went to boarding school. That should say enough right there. And on a mountain. Hello, hippies. So yes. I smoked in high school after class and pot here an there on the weekends. I think I was inhaling then - otherwise kids will bust ya!

3. College in Atlanta. Yes, I smoked socially. 

4. I moved to New York City in 1998. I did not even need to smoke because you could inhale a pack of cigarettes just by grabbing drinks at a bar! Still, I smoked socially outside - talking to the bouncers. I made friends.

5. I did have one boy friend in NYC who was a major smoker. So my social smoking went from 2 ciggies a day to probably 6 but still . . .  way down on the radar for lung cancer. 

6. Radon? So random but apparently there is a lot of it here in CT.

7.  So I thought and thought . . . it was a toss up between the last 2 things. Hmmmmm. So I sit in front of a computer for 8 hours a day retouching from the age of 19 to 43 with not great ventilation and for hours and hours. Could the radiation from the computers radiating toward my chest do it?

OR

The World Trade Center!!!! I was there when the towers fell. I, of course, had my 35mm film camera with me. Shooting away. I was there until the last tower fell and then we all ran with the huge smoke ball behind us as we booked it. I had no fear. I keep taking more and more photos. I also lived around 12 blocks from the trade center. They told everyone on the news shut their windows. But I lived in a 5th floor walk up and even thought it was in early September it is hot hot hot. And I am a girl that leaves windows open with a little fan all year round. So great. Is this why? So many people have died from lung cancer from that day. Lung cancer apparently grows very slowly at first and then once it spreads it grows quickly. The stage I am at now. 

Even though this is not helpful I had to type it because so many ask: are you a smoker? 

It really could be just a combo of my entire fun life - that I have had - with no regrets. 

 

Cheers to Research.

Tomorrow I start. Tomorrow the lemon starts to get smaller. Tomorrow I am scared.  Tomorrow I am hopeful. Tomorrow I believe. Tomorrow I will cry. Tomorrow I will have my fists up and ready to fight! (I am officially a crazy roller coaster of emotions loony bird).

Immunotherapy starts tomorrow. They are unsure if it will work since I have not tested positive for a certain genetic makeup. This is why they did biopsy of me again on Friday - St. Vincents might have gotten it wrong. But it could work. Could!  Ugh. But If it does not work they will quickly blast me with radiation on my lung and adrenal glands first (the ones that are on fire) and do chemo at the same time. 

I like backup plans and then back up plans for the back up plans. I like teams of research people that are passionate about cancer and then also working side by side with Drs in the same facility. 

I kind of like being a guinea pig. 1. Because hey . . . I might be the person they cure cancer on and 2. Me being in a Research Study Group might help people in the future in knowing whether or not those meds work. Toes and fingers crossed. 

Thank you to my Dr. - Dr Herbst and his amazing crew.. wow... I just can't say enough-  thank you thank you... Yale Rocks it..

 

 

 

Mc Dreamy

Yesterday I went in for Bronchoscopy/Endoscopy at my new home, Yale Smilow.  This is the floor where all the pretty doctors were hiding (yep, I went there). I noticed this fact as they wheeled me into the room for the procedure. I kept looking around . . . thinking . . . I felt like I was in Grey's Anatomy. For Real. And then the overly handsome nurse put the mask on my face to go to sleep, and I said: "Here we go . . . "

Unfortunately, I did not wake up as Mrs. Dreamy. I was coughing uncontrollably, more than usual and felt like I had been hit by a very large lemon. I went home, had a fever and tried to pull myself together for my girls. It was the father/daughter dance. The girls looked SO cute in their dresses and their half coifed hair. They looked like mini prom girls, which just made that fire in my heart stronger as I want to be here for their real prom night. I am here to fight!!

 

Pink Cheeks

I had a blood transfusion the other day. This was definitely a first. I felt part vampire, part like I was in someone else's movie. I kept thinking as the new blood was going in me: Who's blood is this? Apparently a group of people in Rhode Island. So this is a shout out to all the people that have given blood. Thank you. Thank you. I woke up with pink cheeks and a bit more energy. Who knew a little blood could help so so quickly.  : )