The WILL to live......

I wake up every morning thinking-- whats my WILL to live today?  I lie there in bed not able to get up as its winter now and my sheets feel really good and snuggly, and I think, and I think, and I meditate, and then think again.  I start to listen to affirmations to slightly brainwash myself, as I have a (bday next week) -44 years of habits built up in my brain.  The woman speaks to me in my headphones telling me to breathe, and to be thankful for each day, to think positive about everything.  And then 2 minutes after I take the headphones off, I am back to the un- brainwashed lady.  So kind of not really working, but If I keep doing it it WILL SINK IN!!!

SO basically. I need to come up with my own -will to live- thoughts. The only problem is every time I start to think about my own affirmations and wishes I start to cry. UGH....So I figured If I wrote them down -they would make me stronger and I could visit them daily to remind myself when things get hectic. 

These are wishes, affirmations, and little gems of things that bring me joy (no particular order) 

The sounds of wind outside while I am in my warm house.
The morning light and how it trickles in and makes everything look cozy and pretty.
Knowing that Christmas is near and I can decorate the house soon. yay!
A play list on Spotify of all the songs I used to listen to as a kid. (yes olivia nj is in there : )
Taking photographs with backlight in every photo brings me joy. 

ok here we go... the tissues... sorry.... 
when my kids get off the bus and run to me in the best moods and give me the biggest hugs.
when paul comes home from work early and the whole house lights up. He makes everyone laugh. 
when all the kids are in bed with me and we are reading a book together, and there is lots of conversations. 
Arm wrestling my sister and winning for the 3rd time. yes, this made the list.. pure joy.. lol
Having a house full of family on Thanksgiving and watching the kids all play together. 

wishes:
I get to see the kids go to college.
I get to see my children walk down the aisle at their weddings. 
I get to see my grandchildren alive and happy so I can spoil them all. 

IF you are reading this .. take a deep breath, be thankful, don't sweat the small stuff , and be grateful that you are alive and well.  Be the best you can be and love one another.  

 

cheers.. minus the drink.. one thing I miss... drinking my wine.. thank you liver : (  

muscles in my head

In all my working out  exercising years- and there were many.  I felt strong and lifted weight which I thought was a lot of weight... with trainers and without. In my head, I thought I was buff and strong, but when I looked in the mirror I was still really skinny and scrawny.   

When the Dr's last month  said they were going to put me on a high dosage of steroids, I was kind of excited. I knew my skin would be pretty,  I might eat too much... but that's ok, and I would have lots of energy to clean my floor with- as I have a lot of time on my hands.  but....  BUT.. B U T!!!... then a few days passed and the pills started to settle in.. and this crazy creature started to come out of my mouth. out of my body.  A frustrated, yelling, annoyed, easily agitated me.  I looked in the mirror and yep, I have a crazy person in my brain. 

I love my children. let me say it again. I love my children. but on steroids it takes it to a new level.  A really new patient level.  I feel like a teenager that throws fits, runs to the room and slams the door, and just wants to be alone and cry and scream.  yes. crazy.

They gave me pills to offset the evenings because that is the worst time- all the build up- but they just put me to sleep.

I have one more week on them, and all I can do is apologize to the kids, and dogs, and husband.  Amelia might never want to practice the violin .... ever .....again.. lol

Breath and be calm,  mantra    

love, alix

ALK

ALK- ( Anaplastic lymphoma kinase ) a genetic mutation/rearrangement in the body.

ALK fusion proteins are always active and growing.

ALK is a rare form of Lung Cancer and effects 4%-7% (11,000 cases a year). 

Lung cancer is by far the leading cause of cancer deaths worldwide. 

I take 8 pills a day, to improve my life expectancy. For many patients, these drugs produce temporary remission at best- sooner or later, cancers inevitably develop drug resistance and return deadlier than ever.  (eek- scared) 

As I am excited my cancer has gone from stage IV to stage 1, and it is getting smaller every week- I feel like I am just waiting for results from the Oncologist to tell me I have new growth in my body and that I am immune to the pills.  There are 3-4 drugs I can take and I am drug 2 now.    I do really try to stay positive, eat healthy and do everything the Oncologist say, but I  just don't know how many years I have left. (how is that for positive?)

Paul calls me party cloudy. It is hard to be sunny all the time when you know you will never truly be in remission and that your cancer cannot be cured. Its a waiting game. 

This is why we need donations and funding for research --to come out with more drugs or a cure for these genetic mutations.  And of course to keep me alive until I see my grandchildren.  (bonus)

ANYONE THAT HAS LUNGS CAN GET LUNG CANCER!!

https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=745

election day

Who knew that election day would be a really good day --seeing as how the last one went.!

I had scans yesterday and went to Yale for results today. There are some interesting side effects going on, like swelling of the feet, an infection in my lugs, yellow eyes with high liver enzymes and a few other random things.. but in the end.. I am alive and doing well.  The Dr's told me the only cancer I have left is 1.3cm left in my lung.. How great is that? Just think 10 months ago I was covered in cancer and had a lemon size mass in my lung. It is truly amazing how much science can keep a girl alive for longer then expected. I am so thankful for Dr's, and research.   

 

Please help raise awareness -it is lung cancer month right now.  

inner cheerleader

I wake up and think .. here we go again... another day. I wake up with the kids, make their breakfast, help them get dressed, prepare snacks, put them on the bus, clean the house, do laundry and repeat. Everyday.....I feel empty inside. How do stay at home moms always seem so happy?  My kids always say, "mom you don't laugh at  my jokes anymore", "mom you never smile, you are always so serious". It breaks my heart. 

I used to act more like a cheerleader. Singing morning songs to wake the kids up, being peppy every day and happy-with a constant smile. Cancer changed that. Thanks a lot.

You would think that everyday that I wake up, I would imagine..this could be the last day of my life or one of the last days of my life, and I instantly would be in a happy place. Yes. I know. A bit dramatic, but this is how my brain works.  I should be jumping for joy that I am alive and that every single moment is precious. I am one of the luckiest unluckiest people I know and I should be focusing on the lucky part.

So I started therapy last week.  I basically cried 2 sessions in,  I think you are supposed to? That is the natural way I guess. I was on anti depressants a while ago but now, I am no longer on them.  I wanted to be clear in my head as possible and do the mental work on my own. Lets just say, much harder then I thought. The therapist is helping so far, even if it is just the beginning.  She thinks I have been holding onto my emotions too long and I need to let them out, and set them free ....and that should help bring my happiness back some. This morning before the kids woke up, I did a little meditating and tried to let go of the anger and sadness. The day was much better because of it I believe. I felt more calm and at ease. Still no laughing though.

2 things I really want to get into more. Is working out. I know that will help, but my feet and ankles are so swollen from the meds it makes it hard to do much.  I also want to start a photography project for over the winter time. It will be still life as that is I used to shoot before kids fashion. I think about that a lot. As the creative juices need to be released or I become frustrated. 

I know I will be happy again. I have small moments of finding it within myself. And the kids and Paul make me feel good- I just need to concentrate on them.

 

peace and love. 

alix 

getting real

Since 8 months ago I have not stopped running. You would think a woman that was just given the worst news of her life would for chill for a moment after finding out she has lung cancer. I did everything but sit still. I was going  to cure myself, cook up miracle dinners, give even more love and attention to the kids, make a full life for the family so they would remember how great life is.  

So-Paul and I had decided at this time to make things easier on us. Move closer to the city and sell the farm house. We would ultimately be near the city and have less of a commute. 

The race was on for me-sell sell sell. And we did. It took me 6 weeks to sell it, and I will now tell you this. It about killed me.  I was already on spiral downward mess. I was not eating, not taking care of myself and falling apart. I was so sad to sell the home as I had put all my heart and soul into it.

Once the packing began my brain started to go a bit. It was foggy and unstable and I just kept focusing on closing all the boxes, finding a new home in Old Greenwich and to get the kids sorted in their new schools.  About a week before the move something changed. 4 weeks ago.  I became anorexic, I was not able to dress myself and speak clearly. I could not function. I was hospitalized. They ran every test imaginable. Spinal taps. MRI, CT-,bronchoscopy. The tests showed crazy white noise cells all over my brain. It was effecting everything. I stayed in the hospital for a week, as they tried to feed me, and get me out of this hole I was falling into.  It was scary and I was not myself.

 

I was finally discharged. But not as my old self. Someone else. And in a strangers house.

 Paul and friends moved us in the week I was out of commission, so I give them so much credit for making it happen as doing such a great job.

All my medication has changed.  They updated my cancer meds to another brand which I hear will be better than the first line of treatment I was on. yay on that!

It is going to be a slow slow up hill battle.  Everyday I wake up  and hope I can get though it. I am still having a really hard time with my feet and legs, and a tad with my speech but I am trying hard and will get back to normal soon!!! I am determined to be clear and functioning.  

I had to tell all my amazing clients this Month that I can't work this Fall and that I have to focus on my health right now. I am going to try my hardest over the winter to get back to me and what I love. 

Thank you everyone who has sent me a note, dropped off dinner and checked in. It has given me the boost I need. 

 

Ps-Today I went to Yale to check in and to go over all the many tests they did. The good news is my cancer is stable now and I alive!!   All the tests came back negative.

CT and MRI scheduled for October 8th.

 

peace and love-

alix

 

I have scans on 

joy joy joy

Today I went to see the Dr. and I had  serious Scanxiety this early morning and last night.  This past Friday, I had a CT scan of my chest and a do over brian MRI. I barely slept and my nerves were shaking. Thankfully Paul took the morning off so he could hold my hand and be there for me, as "result day" is usually the worst!

So- joy joy joy in my reports. Cancer in my liver, pancreas, kidneys and adrenal gland is gone. The lung tumor is still there, but sizably smaller. It does not look like a lemon anymore, def. lemonade : )   The Brain MRI shows an auto immune reaction to meds and they say I don't have cancer in my brain, just little dots from the meds or the dots were there before.

Very great news, we are super thrilled!

Next Plan of action. I have the two scans again in September and we will just keep watching to make sure my pills are still working.  I will eventually become immune to the pills, but we are hoping that happens after a few years. If anything does come back , they will switch my medication.  There are 4 right now that I can be on. With this rare form of cancer, I have to be on them forever. If I stop taking them, the cancer will come back. I am hopeful that once I get to the 4th medication there will be a 5th and 6th and maybe even a cure for it. I will keep staying positive, keep fighting, keep enjoying the special moments, and keep trying to help others that are in worse shape than me. 

 

carry on and live strong..

peace and love,

alix

 

 

deeper words

Finding little bliss moments are usually with my family. The past few weeks I have been trying to find them in myself under the dark cloud that is over me. I have been trying to think Cancer is a gift. It makes me slow down and appreciate the things around me. But I have been looking further into myself now. Beyond- the things around me and a general feeling of being happy. I have been reading a lot lately, and sometimes I jot down words and sentences that move me and push me to change and be better.  So with that word better, I begin to jot down a few for you, in hopes that someone is looking to change a little.

• be better, not bitter

• be glad for your suffering, it will teach you patience and endurance

• be happy for long suffering

• Cancer does not care- go higher

•Visualize your story you want to be in- the way you want the rest of your life to be. ( I have been visualizing being at my children's weddings and holding my grandchildren)  

•this one is big for me-  I am not looking for blessings to come in my life. I'm looking to be a blessing in someones life. 

 

peace and love, 

alix

 

Late Spring Update 5-24-17

My last post was pretty depressing, but real. People ask me how I am doing and sometimes it can be hard to come up with sunshine and roses (peonies) all the time. So I really try to tell it like it is. 

Today my mood and outlook is better. I have more energy which really helps in the end. Its amazing when you are tired it also makes you feel depressed.  The Dr.'s put me on my new favorite magic pill called Wellbutrin. It has an energy lift in it as well. Yay!

So onto being real again. My biggest fear besides the usual --plane crashes, kids getting sick, falling off the empire state building, oh and Brain Cancer. I was hit with some minor new news. 

I had a brain MRI last week, and received results yesterday. They said I have speckles of stuff in my brain that they need to look further into. The Dr. said it could be the early stages of Brain Caner (fuck) or inflammation.  Since I am on new happy pills I am going to believe it is inflammation. 

I have always had a bit of chronic inflammation (food & drinks) so now I am really going to focus on it. It has been REALLY HARD not to east certain things.. remember how I told you all how much I love Bagels.. well .. I have not been very good. I have had some bagels, and maybe with a little cream cheese. anyway.. bagels, dairy, refined sugar, meat.. all cause inflammation. The two words... brain cancer... have been enough for me to finally get rid of bagels and pasta in my life. You would think the other two words would have done it (lung cancer)  

Many people that have lung cancer have brain cancer as it is the same veins-blood that  join the two.  

On a side note. Natalie my seven year old asked me to show her where lungs are on her american girl doll yesterday, as we played dolly together. Its amazing how much small children are aware of what is going on. I want many more dollie moments. #goingtolive

peace and love and wellbutrin 

The Boat

Now that things are settling in, physically and Mentally, the real reality is officially here.

The first month was me acting like a deer in headlights. The second month I became a fighter and screw you cancer, I am taking you down! The third month - I am tired, slightly depressed and never want to get out of bed or off the couch.  Hello amazon prime and every other show known to man. Just finished Mozart in the Jungle . . . so good. lol

I wake up every morning and think about a plug that is saving this boat I am in from sinking. The plug aka pills. There is this nervousness of what happens if I don't take these pills for the rest of my life and what if I become immune to them - like 50 percent of other ALK cancer patients - that is always on my brain. Thankfully there are other pills. But the reality is that this Mama will be on pills for a long time and, I have heard, the rest of my life. So far I hear I have a good 7-10 years of life by the people I have met that have the same cancer I have. 

Pills.

This sleepy, numb, anti-social, depressed feeling is from lung cancer and also the pills I take everyday. Yay. I get to live but feel like this. #lifechange. So I contacted the Drs today to see if they can put me on more pills hoping the new pills can cheer me up a bit or feel more energy. Pills. Pills. Pills . . . ugh. Did I mention I HATE TAKING PILLS!  As I type this post I want to backspace a lot here and delete most of what I have written as I am not one to complain, but hey, this is a blog about me and this is supposed to help.  

I have 15 minutes until 3 wild little peanuts get off the bus demanding help with homework, dinner I hope they will eat then the usual baths, brush teeth, pjs, reading, the daily fights of no electronics and then my little one who begs me for candy right before bed time as she knows I am weak and I give in, so I do. Then I clean house and THEN I have a date with my new show I just started 13 Reasons Why. Holy crap - this show. This is real high school? #terrified. I need to be a better Mom so my kids are extra nice and don't commit suicide. I'm only on the 2nd one. I have it good right now with them all in elementary school. Things could be worse, but I need to get stronger and have more energy for the future to come as candy fights are way easier then real  high school issues. Eek! 

Rant is over today. Thanks for reading. PM me if you are on an anti depressant - mums the word, I just want to know which ones are good out there. 

Love and light . . .  

Alix

PS - pills 

 

Spring Update 4-18-17

We had an amazing trip to Florida last week. Lots of fun and a much needed break. Then last week I had a CT Scan and received results today. 

Facts from CT scan:

Lungs: decrease in size of left mass

Lymph nodes: the cancer is showing a reduction in size and one section is actually gone - yay!

Bone tissue: the cancer is showing itself in a different form - (sclerotic lesions) that look like they are disappearing (I'm hoping) as there were a few new areas.

Pancreatic body and adrenal nodule are stable in size- which means the cancer has not grown but are the same size. Sometimes it can take longer since only on medicine for 2 months. 

All good news that things are becoming smaller. I will have to go in to the hospital in a few weeks for an EKG and heart scan as they have found fluid around my heart. They think the fluid is from the meds I am on and to be safe they are checking it out. 

Thank you for reading and caring, thoughts and prayers. I have a long road ahead of me with my health, but I am doing great! I will also be starting back to work soon in May. Yay! 

(a few photos from our trip)

 

 

 

Our Kids and the C-word

When I was diagnosed with the C-word the social worker at Yale said we should be as open and honest with the kids as possible. To make the word "Cancer" feel like an ordinary word that we throw around our house casually.  Friends of theirs might hear that I have Cancer from parents and then speak to them about it at school, so they need to be strong and prepared. 

The kids knew I was sick. I was tired, cranky and I could not read or sing to them at night. They had to stay at my friends house a bunch of times as I was in and out of the hospital, so obviously something was up. We never made a formal announcement to them. We just told them that mommy is sick because she has Cancer. And mommy will be fine soon, she just needs strong medicine to help her feel better.  Even though we have had a lot of people in and out of our home, I have tried really hard to make our life feel as normal as possible. Naps help when they are in school. 

My 11 year old son Lucas knew more about Cancer than Natalie (7) and Amelia (9). He immediately asked if I was going to loose all my hair and die. That was a hard conversation. I was about to go in for Chemo and felt like I did not have much hope (before magic pills became an option). I just held him really tight and said I might loose some hair but I am definitely not going to die. I will be fine, as mommy is strong and I have a lot to live for and I did not want him to be worried.  Natalie and Amelia when they heard the news they were so sweet: "Mommy you need your rest" "Mommy can I bring you some water" "Mommy I love you" is what the girls always said to me. And lots of lemon paintings and lemon art they have been making me. lol

We had a winter break in the Florida Keys - all paid for and planned in February - that we had to cancel. I think the news that we could not go away was way worse than having the cancer speech with them. The kids had been crossing off on their calendars for which day we were leaving. We really needed this trip too. Thankfully the Drs gave us the ok, so we leave in 2 weeks for a much needed positive happy trip. The airline and hotel and car rental companies told us we would not loose any money since we had a legit reason. Yay! 

The best thing I can recommend to anyone is to be open with the kids and share with them scary words, as it prepares them for the future. They can handle it. They are strong, and they want to know.  

Love and light -
ALIX

Art by Amelia Martinez

Art by Amelia Martinez

 

 

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.