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.

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)