Phew!!!

What a difference a vacation can make. Hello Debbie Downer in that last post. It's sad that I truly did feel that way and needed to let it out. Cathartic. It was very nice to get away, get away from myself, get away from being a cancer patient. It is so nice to be an anonymous person traveling the globe meeting new people and doing new and exciting things. I surely needed it more than I realized. I'm back and feeling much, much better. I also have a renewed passion to kick cancer's ass and be the strong, awesome person I know that I am deep down (yet pretend most of the time to be humble)...ha.

Here is a note I typed on the airplane ride home:
So thankful for a wonderful trip to Australia. We had the best time. It was nice to get away and be an adult for a while. It's easy to forget what that's like; to only have to worry about yourself for a short time. We missed the kids terribly but we knew they were safe and in good hands with the Grandmothers. It was also nice to forget that I am a cancer patient. I just blended in with the crowds of tourists at the airport, ferries, museums, parks, and events. It's nice to get out of your own head and self-involvement and just BE and just DO whatever you'd like to do. It was a true vacation in that sense and so much more. It was also our nine year wedding anniversary and a time to reflect on where we've been and what we've accomplished in the past 11 years that we've known each other. Over a decade and we can still be friends, that is truly an accomplishment. Laughing is so important to me and David; we can make each other laugh. But hey, looks aren't everything. In all seriousness, to look into someone's soul and know that they know you inside and out and love you unconditionally despite your flaws...well thank the Lord for that. What a blessing to have David in my life. Ok, I'm sure you're gagging now but we are very lucky to have a marriage that we feel is worth working on and holding onto. We all have our faults, of course, marriage ins't always a bed of roses as the saying goes but the best advice I got while dating is to be with someone whose faults you can live with. He lives with the many faults of mine and I tolerate his one or two…

He just read this and said "thank you honey…and I didn't even proofread it for the couple of nits"… See what I mean?!?!?!  Hilarious. Thankfully I have a wonderful and wicked sense of humor.

While on Hayman Island we hiked to the top of said island (not very far) but when I reached the top I was overcome with emotion. I had this small story pour through my thoughts and I couldn't wait to get back to the room and write it down. 

The shore retreated back with such force that small fish and sea creatures were instantly revealed in small tide pools and exposed areas of coral and sand. It was evident that this was not a dramatic changing of the tides but a forcible disaster manifested by mother nature to the highest degree. They watched this as they neared the top of their island hike and felt the earth begin to shake beneath their feet. They listened with terror as squawking birds and hissing wallabies began to drown out the sound of the sucking ocean. In the distance they saw a wall of water rising against the radiant blue sky with its mocking sun shining down brightly. They dare not say it but they felt an imminent and swift death was possibly seconds away and they were paralyzed.  Being at the top of the small island they knew there was no where else to run or hide. All they could do was cling to each other with combined looks of love and desperation. The sobbing became uncontrollable as the overwhelming emotions of fear and certainty grew so large as to quell out all possibility of hope. They couldn't catch their breath. As she turned her head to look away she caught the delicate scent of sweet jasmine, letting it fill her lungs and she remembered her mother. The fragrant and beautiful white jasmine vines climbing the roof of the small house she grew up in that her mother had pruned with such precision and care. She felt strong and grateful. She breathed in the scent deeply and felt the strong embrace of him. All her senses heightened by adrenaline. Yet she became calm. She kissed the corner of his eye where his smile had happy crows feet; produced by a half century of living and loving; half of those years they spent together.  "This can't be it" he said. "No, it can't be, I love you. I love you. I love you" she said softly. If only they had more time she thought as the incredible volume of sea water approached and tore them from their embrace. 

Health updates:
Starting 7.5mg of afinitor tomorrow. Small mouth sore that I nursed in Australia is now almost gone, small sore on the tip of my tongue (possibly caused by a sharp area on one of my teeth) is sensitive but I hope going away. It's time to get serious. Buck up girl. You're feeling too good which means it is time to bring it on. Go big or go home. Back to being serious about the diet; giving up sugar is damn difficult. There are too many delicious vegan treats. Time to spring off of all the walking and swimming in Australia into a more consistent workout plan.

The Battle We Didn't Choose

You want to know what living with stage 4 cancer is like and I just can't explain it. Today is David and my nine year wedding anniversary and you know how I feel? Defeated. More and more the thoughts are creeping in that this is too hard. It's not going to get better. I sometimes want to give up. I can see how people must get so exhausted and in so much pain that they are just "ready" to let go. I'm not just feeling down. I've felt this way for a while but I've been way to chicken shit to say it or write it. I'm fucking scared. I can't keep going the way I am going. Some days even when things are rough I have this glimmer of hope that things will get better, that there will be some miraculous cure found. That I just have to stay the course so that this miracle cure will come and make everything okay. But I see how each day my body takes a beating and it gets harder to recover. I see the scars, the side effects, the strain, and the hurt from this battle that I didn't choose. Some days I feel that since I know my time is limited and I'm going to die then I want to go out swinging. I often tell my mom and those that really know and understand what I am going through that "I can sleep when I'm dead". It's just that the death part might come faster if I continue to burn the candle at both ends.

The past two days have been difficult with the kids. They want me a lot, they want more of me than I can give. I feel guilt at every moment. Not a good enough mom. Not a good enough wife. I'm not able to manage the house, the cooking, the shopping, the making of anything small or big. We have a huge staff of people that now work for us. A live-in housekeeper, a vegan chef twice a week, a nanny, an errand assistant once a week plus the perks of pressed juice delivery twice a week and coconut and almond milk once a week. I go to acupuncture once a week. I do yoga at home with an instructor. I am privileged to live this lifestyle afforded to me by my amazing husband. I shared my guilt and emotions with my therapist and she said that all these people who say "everything happens for a reason" are full of crap. These things just happen. Bad things just happen. I didn't chose to have this happen to me. We didn't choose to have this happen to our family. It makes me sick to my stomach to watch day in and day out how this is effecting the people I love and care most for in this world.

This morning before I left for a kindergarten tour (one of the many things stressing me the fuck out - the kindergarten application process) my nanny texted me that she had a family emergency. I would feel more sympathetic except that each week there is something. I looked at her time cards and there hasn't been two straight weeks of work since she started working for us full time that something hasn't happened. Her kid is sick, she's sick, her car broke down, her mom has a legal issue, her sister has an emergency, etc. etc. She also just tried to get away with as much as she could and push limits; her hours were 11-8 but she couldn't figure out how to get here at 11 so if she was late one day she would show up early the next to "make up" her hours so her pay check was in tact. Stuff like that. Stuff that made me cringe. I would never, ever in my professional life do things like that. These things would cause stress and make me upset which just exacerbates the situation. Needless to say I didn't have enough help today since she didn't show up. And on the day when I'm feeling so exhausted that every moment I get I rest my eyes and put my head down. Is it unrealistic to think that someone could approach a job in someone's home like a professional? To be dependable and reliable? To be in the present moment at your job so that when you are supposed to buy lemons at the store you don't buy limes?  Anyway, enough of that. I know what I need to do about that situation and it isn't going to be easy but I will take care of it.

As I was feeling down and out I saw an article flash across my email from unworthy.com. "A Husband Took These Photos Of His Wife And Captured Love And Loss Beautifully" Reporter Rossalyn Warren writes: "When I saw these incredible photos Angelo Merendino took of his wife, Jennifer, as she battled breast cancer, I felt that I shouldn't be seeing this snapshot of their intimate, private lives. The photos humanize the face of cancer and capture the difficulty, fear, and pain that they experienced during the difficult times. But as Angelo commented: 'These photographs do not define us, but they are us.'"  Holy crap. It really made me feel like it was meant for me to see this. On this day, on our wedding anniversary, to know that it isn't just us going through this terrible ordeal. It also made me see how devastating this battle is on the "co-survivors" like my husband David. I so wish I could make this better for him. I so wish I could make this better for my children. Not just for me. We are all in this together. Happy Anniversary to the most loving, dedicated, and amazing husband a girl could ask and wish for. David, you are my rock and I love you more than you could ever know.  I want you to know that I LOVE YOU. That I APPRECIATE YOU. That I RESPECT YOU. We have a promise to be married for sixty years. We are at year nine. I pray that the other 51 are full of continued health, love, laughter, happiness, cuddles and giggles.

I love you Poopy-doop.
XOXO
Poops

 

In other health updates: fatigue and only one mouth sore on the 5mg. Philomena wants me to bump the dosage up to 7.5. I'm not sure when but probably when I return from our anniversary trip to Australia. Our first trip away from the kids of this length and this distance. I'm very nervous but also very excited too.

Finally!

Some good news. The two lumps in the right breast are fibroadenomas and I couldn't be more relieved.

Mouth ulcers, they are finally getting better. Today is day 11 of this misery. I finally feel that they are healing since there isn't singing, piercing pain when I drink anything or try to talk. I'm sure my family enjoyed the silent treatment...oh and I lost eight pounds on this special liquid diet.

I have lots more to talk about.

I watched lots of documentaries while I have been resting.

Please watch:

Forks over Knives

Burzynski

Food Matters

Gerson Therapy

I am not saying that I play to ditch Western medicine entirely but this chemotherapy is killing my health. I'm even more committed to being Vegan and the plant based, whole foods diet.

That's all for now.

So far not so good

I started the new medication combination. When I got the prescription, Dr. McAndrew's nurse Claudia told me that I was starting with the 10mg Afinitor but that if the side effects weren't manageable then I could switch to a lower dose. Gosh, you'd think you'd start lower and then build it up in your system so that your body could tolerate it but I'm not an oncologist...

I was already weak, as you know, from the Xeloda. Plus as Dr. McAndrew told me, my blood is weak from ALL the cumulative rounds of chemotherapy - including those I did during and after pregnancy. My body is continually taking a beating and it's getting increasingly difficult to recover. It's like I can't catch up. Regardless, I started the treatment right away because - well duh, I want the tumors to shrink and go away. I want the cancer to fuck off and die. Dr. Moulder warned me about the mouth ulcers. Claudia told me that Philomena has many patients that didn't have bad side effects. I had hope to be one of them.

Well, well, well, over the weekend I started developing those nasty mouth ulcers. It started as one small one that I figured was a canker sore so I refilled my valtrex prescription (that is an Rx for herpes simplex - no, NOT the genital kind) which has helped in the past. No go. I got the MMX prescription mouth wash which is Maalox; liquid benadryl and lidocaine that you swish and swallow. I know, right? That is not a typo. I don't swish and spit, I swish and swallow. Gnarly. It worked great at first but the more I use it the less effective it seems to be working. Ugh.

Philomena told me to stop the Afinitor for 5-7 days to give my body a chance to heal. I told her how scared that made me and vowed to continue because "I'm a fighter". That and I'm incredibly scared; I am worried that this cancer is going to get the best of me so I want to be aggressive with treatment. File that under STUPID. I took it another night and woke up to about 6 mouth ulcers. My whole mouth is swollen and I have a rash on my eyelids, my chin and my upper lip (that always makes me laugh since it is a family favorite to say "what smells? Oh, that's probably your upper lip")... I went to acupuncture and Dr. Mao said that all my mucous membranes were terribly inflamed and that I absolutely should take a break from the medication. So I am. I'll take a five day break (maybe seven) of the Afinitor but I am still taking the Aromasin.

This photo shows two of the ugly sores inside, the raised bump rash on my upper lip and my eyelid rash. Ain't that a pretty picture?!?!?! Here she is...Miss America...

I posted a close up of the sores on facebook because while I appreciate when people are adamant that "I look so great and so healthy" or "you would never know you were in treatment" that I am not actually healthy and that I am, in fact, in treatment. I wanted to vent that I hate this cancer and the treatment. It's not just canker sores. Of course everyone had a response for some kind of topical ointment that worked for them. If only my immune system was healthy like everyone else...but these sores are chemotherapy related. The only thing that is going to stop them is to stop the treatment.  Hopefully they don't come back with the smaller dose. Nonetheless I am still trying any and everything. The MMX, benzocaine gel, dr. mao's special mouth rinse, valtrex, etc. etc. Note to those of you who recommended hydrogen peroxide rinses - it stings like a mother!! Don't do it. The tissue is too delicate with open sores. I was hopping up and down in pain. It felt like rinsing with acid...or fire...or acid lit on fire... My favorites are the MMX, Dr Mao's rinse and the benzocaine gel plus tylenol.

Here's another thing I posted on Facebook - a video of things said to cancer patients. I thought it was funny but not all of it was relevant...

Metastatic Breast Cancer Video

I know people mean well and it must be incredibly awkward to find the right thing to say to someone with a serious illness. I've been in the fight for years now and I struggle myself to find the right words. It's a challenge. Some of the better lines I've heard and make me feel supported are: "I'm so sorry you have to go through this" or "I'm sorry that this is happening to you" or "I'm sending love (or light or prayers or positive energy) your way"... I also like gifts of hugs, food, phone calls, texts, etc. Anything to make me feel thought of and relevant. Silence can be deafening.

I know I've written about this many times before. I don't know how to change this. It's too hard for me to reach out, I don't have the time or the energy most of the time. I have to rely on other people to reach out to me even though I don't have much going on except kids and treatment. WHICH IS A WHOLE HELL OF A LOT.  But I suppose that doesn't make for exciting conversation. What a downer it can be to talk to someone in treatment.  However, I do my best to stay upbeat and positive; I generally don't talk about cancer or treatment when I'm out. I love meeting new people so I can learn about them and shift the focus off me. I'm learning to be a good listener because I can't stand small talk. I'd rather hear about YOU!!

On another note, I went today for a breast ultrasound of my right breast, the normal breast because I was having some tingling. I figured it could be from nerve regeneration from the reduction surgery but I wanted to get it checked out. I went to Cedars and realized that none of this phases me anymore. It does at the very heart of it but the daily twist and turns seem manageable. After the ultrasound, where the technician took a very long time and asked a lot of questions I knew something was up. She showed the reports to the radiologist and I was then ordered to get a mammogram. After the mammogram I waited about an hour for the radiologist to review the results. Two lumps. He said they could be fibroadenomas but he's ordering a core needle biopsy to make sure. So I get to do that tomorrow! Yippee. I don't even want to go there. I have no idea what it would mean if it were cancer since I'm not sure my blood and my body is strong enough for another surgery. Hopefully I can find out the results sometime Friday otherwise I get to sweat it out all weekend for results on Monday. Yay me!!

Latest update

I haven't had much time for the blog in the past few months... Thank you to all of you who have emailed, texted, called and contacted me on Facebook. I do get your messages and I really appreciate them. Upon returning from back East I was crazy busy with the move and organization of the house. This was much more time consuming than I had prepared for. It really wiped me out. I wanted to get everything done all at once, shocking I know, but I want to get everything over with and ordered and prepared so I can focus on what really matters - my health and my family. I am getting to the point where I could care less about furniture, decor, things, things and things. I just want this house to be clean, simple, organized and efficient. Everything else is clutter and unnecessary. Do I need 13,000 different types of vases, glasses, cutlery, etc. etc? No we don't. I'm purging and simplifying.

I want to purge and simplify my health too. With all the stress of moving, unpacking, organizing, etc. I was really wiped out. I saw Dr. McAndrew each month since we returned and by the second month she told me my tumor markers were creeping back up.  Ugh. What the hell did that mean? To find out I would have to repeat my scans...but I was due for them anyway. Three weeks ago I did the full PET/CT scan and although three of the liver tumors are stable or have shrunk, there is one that has mildly progressed. The area for most concern however, as if that weren't enough, is that there is increased metabolic activity in my bones. Lovely. It means the Xeloda is no longer effective.

I do want to say that I was on Xeloda for over 9 months. That is actually much longer than most people are on the drug. That is a good thing. It means the cancer is stupid. Yay. I hope it just keeps getting dumber and dumber and dumber and then just dies.

After hearing the scan results David and I met with Philomena about her thoughts for next steps. She suggested Afinitor which is newly approved by the FDA. I still wanted a second opinion from Dr. Moulder at MD Anderson so that began a two week process of pushing to get an appointment. I went this past Thursday for the day and Dr. Moulder said it was only "mild progression" which made me feel better than the portrait Philomena was painting. David and I both took a long, deep breath. Dr. Moulder said that it was just time to switch the medication. She agreed with Philomena about Afinitor but said I should take that in conjunction with Aromasin. She also suggested that I get an oophorectomy or switch to monthly Lupron shots from the every three month injections and continue Zometa or Xgeva, the bone strengtheners every month.

Other than the stupid asshole cancer, I am doing well. Staying vegan for the most part, juicing, fasting, controlling portions, being smarter about what I put into my body...simply can't do alcohol, each time I try a glass I feel horrible later...that kind of thing. I'm also focusing on walking, yoga and I finally did a ballet class this past Saturday. I am trying with all my might and fury to get a schedule and a routine going again so I can take care of myself. For the most part I have just been focusing on kids, house and trying to figure out what the new treatment protocol will be...

This has all been sinking in. And it is all very heavy. The side effects of these drugs are much more significant. One drug has four 8.5 x 11 pages of side effects and the other has SEVEN.  I came back home from Houston and started getting my ducks further in a row.

I called Abby's school and said that I could no longer just keep her Monday through Thursday for three hours a day. I need more support. They were very helpful and are moving her up to the developmental kindergarten so she can attend school Monday through Friday from 9-2. She is really ready for the transition anyway. She starts tomorrow and we are thrilled. She is very, very excited too because her friend's sister Isa is at the DK and Abby has a girl crush on her.

Leo's schedule has been a thorn in my side. About a month ago before school started I realized that because his little body has to work harder than other boys his age he has been keeping and taking longer naps. I wasn't about to take that away so I could socialize him at school. We worked with the Director at Wilshire and after a week of back and forth we were able to get him into the MWF morning class with the younger kids. This is nothing short of miraculous and amazing. This also means he gets to keep his T/TH therapy schedule for the most part. I had to move other MWF appointments to T/TH but all in all it seems to be working out. He loves school. He is so precious.

Yesterday I went back to Tower to get the lupron, the flu shot and talk to Philomena. My blood counts were down so I had to have a neupogen shot. All those shots combined with the multiple attempts to draw blood from a vein left me poked like a pin cushion. FYI, flu shots hurt your arm since they are intramuscular so rub, rub, rub your arm!!  Overall I am starting to feel defeated in many ways. My bones and joints creak and crack constantly. I can't recoup from a cold like I use to. I had a cold about a month and a half ago and the cold is barely going away, even after antibiotics two weeks ago. My body just feels tired and run down and as if I have aged twenty years in the past two years....Bleh.

Time to focus on being well. It's time to be very, very serious. Nothing can be extemporaneous. Routine is going to be everything going forward. Slow and steady. I'll continue to purge and simplify so that I can get down to the bare bones of what is important in this life. I want to be here for my husband and my kids. I want to be a great wife and an amazing mother. That is what drives me every single day. I am not going anywhere. I have too much to do.

The following are my affirmations from Louise Hay that I am really taking to heart. I have them posted up on my bathroom mirror and I say these as I brush my teeth, etc. I am hoping that with repetition they become embedded not only into my mind but into my heart, soul and body as well.

PROBLEM		PROBABLE CAUSE		NEW THOUGHT PATTERN
Breast Problems		A refusal to nourish the self. Putting everyone else first. Over-mothering. Overprotection. Overbearing attitudes.		I am important.  I count. I now care for and nourish myself with love and with joy. I allow others the freedom to be who they are. We are all safe and free.
Cancer		Deep hurt. Long-standing resentment.  Deep secret or grief eating away at the self. Carrying hatreds. “What the use?”		I lovingly forgive myself and release all of the past. I choose to fill my world with joy.  I love and approve of myself.
Jaw Problems		Anger. Resentment. Desire for revenge.		I am willing to change the patterns in me that created this condition.  I love and approve of myself.  I am safe.
Lymph Problems		A warning that the mind needs to be re-centered on the essentials of life. Love and joy.		I am now totally centered in the love and joy of being alive. I flow with life. Peace of mind is mine.

Healthy Update

Had my scans, in fact...had the real McCoy PET/CT scan, on Monday. Not just the usual chest x-ray and CAT scan. On Tuesday after sweating bullets I went in to see Dr. McAndrew. I ended up waiting 2 hours to see her. She had one patient ahead of me after the second hour but popped her head in to say "I'm sorry, I'll be there in a little bit but I LIKE the results..."

Basically, the tumors are stable, there is one that has shrunk from 2.4 to 1.6cm but there was one that appeared to be larger but she said that could be an anomaly from the section "cuts" of the machine.
It is good, no great, news!!! So how come I don't feel like celebrating?

I'm tired and stressed out. On Friday I went in for my Zometa infusion and my counts were very low. The lowest they've been so the nurse practitioner ordered a Neupogen shot. Plus I didn't have my regular Zometa nurse Jennifer who changes either the volume or rate on the pump for the infusion so I have less side effects. The low counts explain why I've been so tired (you mean to say, it's not just from dealing with staging this house, running all over town, dealing with kids, and not napping or exercising?)... All in all Friday was a tough day but I was better by Sunday. I even made myself go to a beautiful baby shower on Saturday and gather my wits about me to be able to hold a conversation...but that afternoon I was completely shot and down for the count. I felt flu like, not sure if that was the Zometa or the Neupogen. Regardless, felt yucky but now I'm feeling better.

Since my counts were so low they decided to give me one extra week break off Xeloda pills to attempt to bring my counts back up.  Secretly it scares me when this happens but I am also thrilled to have a week break. Yahoo!!

Got the keys to our new home yesterday. I am SO excited. Our current home is on the market and in escrow after a three way bidding war. I want to get through removal of contingencies before we celebrate anything on that end... In the meantime I've set up appointments with painters, floor finishers, swing set guy, pool fence company, DWP, gas company, etc. so that is going to keep me busy for a while.

I cannot wait to get to East Hampton to just chill the f@%# out. I envision efficient and capable movers with white gloves and plenty of deodorant packing us, moving us and unpacking us while I have a meal at my favorite restaurant in the village or play with the kids at a Bay beach... Less then 30 days and counting.

Latest updates

Major general life updates:

• We bought a house. Escrow closes end of May and will be vacated June 5th.
• Eeeeeeeeeeeeekkkkkkkkk!!!
• We are putting our current house on the market at the end of May.
• Eeeeeeeeeeeeeekkkkkkkk!!!
• Painting and touch ups need to be done on the new house so we can't move in immediately.
• We need to keep this house staged with all our furniture anyway.
• We go away for the whole month of July to East Hampton.
• Timing of all of this is a little nuts.

My personal health updates:

• Doing fine on Xeloda still.
• Dr. McAndrew sent over the addendum to my scans that showed no progression. But the report made me freak out since there was something on there that said something about a new tumor in my liver in some dome that wasn't on the last scan but I think that was from the very first scan before I started treatment. I'm going to call McAndrew on this this week.
• Tried to get in to see a Cardiologist. Called Dr. Samuels at Cedars but apparently when you leave messages for physicians at Cedars it goes into some void and no one, I mean, no one ever actually calls you back. Ever. I've had this happen at two different offices within Cedars. 
• Then called a Cardiologist at St. John's, Dr. Natterson. Same thing happened where I didn't get a call back but I left a message with the service so they could have typed the info wrong so I tried again. Finally got a call back but missed the call so I don't have anything scheduled. I am having weird heart palpitations. I want it checked out to get another baseline. I had an echo and ultrasound right after all that radiation treatment and they said it was a strong ticker. I want to keep it that way. 
• Saw Dr. Childs for a followup. She's a colon and rectal surgeon. That's a fancy way of saying butt surgeon. Lovely. I still have the fissure issue and I want that to go away so I need to get serious about treating it. The one month regimen consists of ointment two times a day and colace once a day. 
• I know for a fact when I keep my diet clean, VEGAN and alcohol-free I feel amazing. 
• My mouth sores from chemo went away after a juice fast for two days. Everything flushed out.
• I now realize that I can no longer drink alcohol. It really doesn't taste great to me and it messes up my system. I will be adding sober to my description of healthy living. I mean, I do have cancer in my liver. It only makes sense not to put anything toxic into it. Clean, clean, clean. Do I want to be having margaritas by the pool and drinks out with friends? YES. But I must have the discipline to just drink club soda with lots of lime and a little pineapple juice to be satisfied instead. I love the social aspect of all of that but not the actual drinking part of it.
• Lesson learned: "one isn't as cool and interesting as they think they are after a cocktail or two"...can I just say sloppy and unattractive also fits the bill.  
• I have WAY more energy on the vegan and nutrient dense green juice/smoothie diet. I have less issues with my hands and feet (which are still a constant issue) and more reserves to power through these super stressful, crazy, mommy days.
• The hands and feet are being managed with nightly application of creams and ointments (I'm loving Dr. Mao's special foot cream, and a special hand cream from whole foods) that are then soaked in over night while wearing socks and gloves. 
• Yoga is really helping. I have been way to busy with kids and prepping this house, plus inspections on the new house to do things for myself. 
• I still need to make myself the priority. Easier said than done. Like my yoga guru said "yes, you are too capable and when you are overly capable it makes it hard for others to 'DO anything' for you" - I am practicing this in the coming week: 1) Letting go 2) taking care of myself and 3) letting others do things for me. I wish other people would get the message about #3 but I can't use hints I have to start asking for things directly. 
• I WAY, WAY, WAY overdid things this passed week getting the house ready for photos. I then went out on Friday night very late and had way too much wine. My body is paying for it. I feel some mouth sores coming on. I will have to juice fast again and get back to my CLEAN diet.
• The house looks amazing so now I can just sit back and relax while the kids destroy it again until the first caravan and open house when I will get crazy OCD again to make everything perfect. (OK, my yoga guru told me NOT to do this. That the right person will want this house even if there is a kids toy around here and there. I have my fingers crossed that it will be true so then I an let go of that OCD tendency to want everything PERFECT...ugh, need to Let Go.)
• Let's not forget how helpful all the deep breathing is...
• I want to get back into an exercise routine. I really miss ballet.
• Never posted this photo on my blog and I need to motivate myself.

Kids updates:

• Leo is very happy. He is very delicious. He is also showing some signs of terrible two's but I try to let that be. I have to remember that just because I want him to walk and climb and run, I have to be happy that he seems content and is making wonderful progress each day. He IS walking and getting more and more confident with the help of his theratog, orthotics and other devices. 

• Abby is entering the "f-ing fours" and I am not kidding. I try to be present for her and give her love even when I want to ring her neck but it is soooooo hard sometimes. She is so grouchy lately and approaches every thing with a sour demeanor. I keep trying to tell her to approach old and new things with a happy face. Like trying new foods. Instead of saying "I won't like that" how about saying "let me try one bite, maybe it is amazing!" That is a work in progress. She is also constantly using her hands instead of her words so all darn day long it is "Abby please use your words, not your hands" or "Abby please use your big girl voice" because she is reverting to baby talk. Ugh. Baby talk is annoying as heck. Leo has a better vocabulary than her right now. Anyway, we are working on that. She is so precious and beautiful. And at times, when she isn't snatching something out of my hand or using a whiny baby voice she will shock me with some crazy, cool kid wisdom or opinion that makes me laugh or fill up with love.

That's all for now. Sending everyone (including myself) love and light.

Searching for something...

I didn't mean to offend anyone with my inner dialogue tyraid that went down in Hawaii. I don't blame G-d for what is happening. There are things that I just don't understand and it is easiest to blame someone abstract than to accept that life is random. I have been and am currently blessed in many ways. I am grateful for so many wonderful people, events, experiences, and things in my life. The thing is that I love my life SO MUCH that it pains me to think about not living it in the future. 

I often realize that many daily activities and plans are made with a heavy heart. I simply approach my life plans differently than before. I seem to only make plans a few weeks or months out. I don't make plans that most people are making or thinking of for the future (at least not at the current moment). It's too painful to think of Abby and Leo going to middle or high school because I'm not sure I'll be there to witness it. I desperately hope to be there to help them with their homework, listen to and help sort out school and friend drama, and offer advice that I know may not be taken. I hope and pray that I am around for my family and to experience so much more. 

I read an article in Hawaii about a woman, Susan Spencer-Wendel who was diagnosed with ALS in 2011.  She typed her autobiography and love letter to her family with her thumb as her body degenerated. (This is the kind of thing that makes me so ANGRY; life can be so cruel. I can't fathom the utter disappointment and sadness she must be going through). She took her news in stride. When she learned she had ALS she, her husband and her children dedicated a "magical" year to living out her bucket list. You can watch her interview from the Today show here and please have some tissues handy. 

"Facing the impossible choice to languish or to live, Susan embraced her fate..."
"It's the precious moments with loved ones that punctuate life's roller coaster..."
"It's about finding that peace and that grace to live life to its fullest..."
"A year dedicated to living with happiness, a celebration to create positive memories that would live on when she couldn't..."

The article and interview put things into perspective. If you think in any way that your life is hard, random, or unfair just imagine what this formerly vibrant, capable, accomplished mother of three is dealing with. The phrase "no one said life is fair" comes to mind....

I did a detox retreat over the weekend with David. I love that he joined me for that. I sent him the email a few weeks ago saying that this is what I wanted to do for my birthday present to myself not thinking he would take the bait. He sure did. I love this man so much. He loves his coffee. He loves his wine. He loves his food. But he loves me too. And he loves himself enough to know that health matters. The retreat was through my herbalist and acupuncturist, Dr. Mao, at the Tao of Wellness. 

The retreat was wonderful for my health. I believe the French do something every summer called a "cure". We need to do that as Americans. We can't let the French have all the fun. It's a time to unplug from the world, relax, unwind, recharge the battery and reboot your digestive system and immunity. It was very nice. There were lectures on toxins, nutrition, Qigong sessions, tuina massage, cupping, acupuncture, etc. etc. The most intriguing part was an "emotional detox" lecture and exercise. We were instructed to press on a specific point on the body then remember a time when we experienced a certain emotion - sadness, pain, grief, fear...and then breathe through that memory to release and let go. It was a powerful exercise. When we had to evaluate fear I had a difficult time. Silent tears streamed down my face as I thought about my greatest fear: dying and leaving this family; not being able to watch the kids grow up. That is my greatest sadness and fear all wrapped up into one. My throat seized up and I grabbed it to make the throbbing stop. This happens in my yoga practice at times too. My yoga girl Andrea tells me that is my throat chakra which is about speaking my truth. 

This whole experience has caused me to be in an ethereal mode. I am constantly exploring spiritual ideas and thoughts. Heaven and Hell. Afterlife. Spirituality. Energy. I daydream that when I die I can be a spirit stuck in this world that quietly listens to the happenings in my family's lives as if a fly on the wall. I don't want to miss a thing. That idea gives me the warm fuzzies.

In this quest for answers and peace in my life I am also looking for ways to make my life happy in this moment. Staying present. I am learning more about yoga and chahkras; Buddhism and Hinduism; religion and spirituality; emotional conflict; space and science fiction, etc. I'm just going crazy...

Anyway....I don't need to worry about this right now. The fact of the matter is I'm not going anywhere for quite some time!!! I'm putting that out into the Universe. YOU HEAR ME??!!! I will fight tooth and nail. As Jill Scott would say, "I'm 'bout to take my earrings off; get me some vasoline"...I'll flight clean or I can fight dirty to the very end. 

I heard this song so many times yet never really paid much attention to the lyrics. It is very fitting. I part on this note from the mighty life philosopher...Prince...or the Artist Formerly Known As...

Let's Go Crazy 

Dearly beloved
We are gathered here today
to get through this thing called life
Electric word life
It means forever and that's a mighty long time
But I'm here to tell you
There's something else
The afterworld
A world of never ending happiness
You can always see the sun, day or night
So when you call up that shrink in Beverly Hills
You know the one - Dr Everything'll Be Alright
Instead of asking him how much of your time is left
Ask him how much of your mind, baby
Cause in this life
Things are much harder than in the afterworld
In this life
You're on your own
And if the elevator tries to bring you down
Go crazy - punch a higher floor
If you don't like the world you're living in
Take a look around you
At least you got friends
You see I called my old lady
For a friendly word
She picked up the phone
Dropped it on the floor
(Sex, sex) is all I heard
Are we gonna let the elevator
Bring us down
Oh, no Let's Go!
Let's go crazy
Let's get nuts
Let's look for the purple banana
'Til they put us in the truck, let's go!
We're all excited
But we don't know why
Maybe it's cause
We're all gonna die
And when we do (When we do)
What's it all for (What's it all for)
You better live now
Before the grim reaper come knocking on your door
Tell me, are we gonna let the elevator bring us down
Oh, no let's go!
Let's go crazy
Let's get nuts
Look for the purple banana
'Til they put us in the truck, let's go!
C'mon baby
Let's get nuts
Yeah
Crazy
Let's go crazy
Are we gonna let the elevator bring us down
Oh, no let's go!
Go crazy
I said let's go crazy (Go crazy)
Let's go, let's go
Go
Let's go
Dr. Everything'll be alright
Will make everything go wrong
Pills and thrills and dafodills will kill
Hang tough children
He's coming
He's coming
Coming

P.S. HAPPY BIRTHDAY TO ME! ANOTHER YEAR SEXIER (this is a joke)! THIS WILL BE A HAPPY, HEALTHY, AND PROSPEROUS NEW YEAR FULL OF NEW BEGINNINGS!!!

Hawaii...

We were fortunate to go away for spring break vacation as a family. We went to a place on the Big Island of Hawaii in Kona named Hualalai, which is an incredible Four Seasons resort. This trip had very mixed emotions for me. I was anxious for the flight with the kids but I was also anxious because it was at Hualalai in August 2010 that I discovered the large lump in my left breast...

The airport, flight and car rides were actually tolerable. Thank the Lord for iPads, snacks and being able to travel with a nanny. We arrived, checked into the Villa, grabbed lunch with our hostess with the mostest Susie and then headed to the pool.  I was so exhausted even though it was my "off" week of chemo from the travel. The kids played in the Seashell Kiddie pool and I laid down in a chaise and tried to rest.

I was overcome with such strong emotions and thoughts. I couldn't help but to reflect back that the last time I was at this pool was such a joyful, easy time. Abby was 1 and a half and I was pregnant with Leo and felt strong and healthy. I had so many plans for the future. After having our young son taken away from us we were blessed with another boy who was growing and being nurtured in my womb. But, unknowingly, cancer was also growing and being nurtured. It was such a blow to realize how different my body is now compared to that time. It started with a little "oh wow" realization moment but quickly escalated to anger, bitterness, and resentment. I was telling G-d in my head "F-you, F-you, F-you! If you are truly there and truly all powerful why would you do this to us? Our son died. I have been mutilated, poked, poisoned, and brought close to death once and now I have to do it again. Why must we keep enduring challenge after challenge? What is that point of all this? Why me? Why us? How crazy things can drastically change in such a short amount of time"...and on and on. I tried to meditate. I tried to revert back to helpful thoughts from reading "the Shack" and other spiritual guides. Although I felt it so strongly at the time, writing this now I am thinking, "what a whiner"!...but regardless I needed to experience those emotions so I could then let go. Letting go is the biggest challenge for me. Experience to let go.

I then decided after resting and having my emotional meltdown (hey, toddlers have meltdowns so why can't I?) that I would take Leo for a long walk on the property. I am so glad that I did. One of the most difficult things about being in treatment for cancer when you are a young (ok, and even a relatively young) person is that your body is very CAPABLE. You are able to overcome the treatments and side effects so much quicker than someone who older. I can also clarify that to say that those who take care of their bodies, not just young people, are also able to overcome the treatment that much sooner. I realized as I was walking how much I love my body despite my "mommy souvenirs", lack of nipple, and the like. I felt healthy in that warm humid air, enjoying the ocean breeze as I walked my precious cargo in his stroller. It put things in perspective for me. All in all I feel pretty good most of the time. Instead of nurturing cancer, however, I am nurturing myself so that I can zap this thing (again).

The next day it happened again. This time as I was driving from the Kona Natural Foods store and started thinking about my grandpa who was born on the big island in Hilo. I was talking to him and was overcome with so much emotion, mostly missing my grandpa...I had a good, old, big fat boo-hoo cry session. (Yes, I pulled over!!) Apparently, I have been carrying emotional baggage around and needed to go on vacation to let it all out. After that second day I was free to enjoy an amazing vacation with family and friends. It was badly needed and also deserved in my humble opinion.

I've talked about this "capable" body issue with my yoga girl Andrea. She was actually the one who helped me figure out that word to describe how I was feeling. Sometimes in Yoga and Ballet I realize how strong I feel. How great it is to be able to count on that strength when I have to go through treatment. Yes, my body takes a huge beating at times but I have faith in my own recovery.

On to the good stuff. I had my scans last Monday. After two weeks of putting myself through mental agony (and poor David through several rounds of booking travel) I decided not to go back to Houston and have my scans here at Tower Oncology. Here's the gist - yes, Houston is an amazing and efficient facility BUT I love my nurses here and know the drill here. In Houston, I have to get a blood draw in one building (get poked) then I go upstairs to another area for the chest x-ray. Then I go way down the block to get my IV started so I can have the scan (poked again, and last time it took them three (painful) tries to get it right). It is a three day trip to have my scans in Houston. Here in LA it took me less than two hours to get all that done (and was only poked once and all in one building). Since I am not in a clinical trial I felt it was OK to stay here and be more comfortable. I like going to Houston with David because it is a break away from home but it was actually nice to come home and recover from my barium drink...

I didn't have my appointment with Philomena (my oncologist) until Friday so I sent an email asking for my results as soon as they came in. It was surreal, for the first time in this journey I felt like the scans were no big deal and that things would be okay. I know that my tumor markers have been coming down so I felt certain that the results would at least be stable if not shrinking. AND...I was right. Things are looking "favorable" is the word that Philomena used.

I asked her about two things I have been researching. Fasting before chemotherapy which is a breakthrough that is being presented by Dr. Valter Longo at USC. And new ER+ trial that is coming out (but for post-menopausal woman) by Dr. Dennis Slamon at UCLA who developed the drug Herceptin for those with Her2neu tumors. Doing the research about fasting led me to extremist notions like Gerson therapy and Hulda Clark which I don't think I agree with at this point. I still believe in combination alternative and western medicine (including those drugs that are tried and true). I do my weekly acupuncture and sometimes I even drink my herbs from Dr. Mao. The research though got me very curious. After going to Houston and sitting down with their nutritionist who pitched the "whole food" approach and "everything in moderation" idea I started to slip in my diet to incorporate bad things like less veggies, more meat, going back to my green tea soy lattes (that are extremely addictive and I noticed that I had to switch from a tall to a grande to keep up my energy), sweets, alcohol, etc. I mean everything in moderation, right? But you know what? I wasn't feeling that great even though I was giving in to my cravings so I mentally felt satisfied. I decided to get back on the wagon. I started being diligent again with my diet and guess what happened. Are you sitting down? I felt better. I had more energy. I don't even need those soy matcha lattes. I did my first juice fast this Sunday and Monday before starting my "on" week again and I didn't feel horrible. I was giving my body nutrient dense juices and I felt amazing. So if the mantra is to listen to my body then I know what it is saying. Vegan lifestyle please. But I'm not really being that extreme. I'm primarily a vegan but at times, an ovo-pesca-tarian who eats some goat cheese and will have wine from time to time "in moderation"!!! 

Over and out. I've got like three more posts that are half written but hey, I'm a busy gal.
Feeling light and thankful,
Jess

Friendships...and books

I had the opportunity to go away for three days on an adult trip with the hubby and some friends (two other couples).  It was a nice get-away for David and I. He got to taste lots of amazing wines, have indulgent meals, and bond with the other hubbies. At the airport I bought this book called "The Happiness Project" and started devouring it on the plane. I can't talk about it fully since I haven't finished it yet but it is a very good read. It is a book I needed to find at this time...everything is so uncertain as I push my way forward through life...

Sometimes the books you need have a way of finding you. While passing through the airport you may decide instead of buying a trash magazine to pick up a paperback to expand your mind or grow your soul or laugh out loud. Or you may revisit your home book shelf to find books that you had wanted to read at one point but never did but may now fit your life more than ever. Do yourself a favor and pick it up and read some of it just for "shits and giggles". A few paragraphs, maybe a chapter. I don't have a whole lot of free time so I tend to do that lately. I am in the process of reading three different books but haven't been able to complete a single one just yet...

Some books I may never pick up. I went through this phase of buying Shakespeare, Austen and Bronte sisters' books thinking I wanted to get back into romance classics but that has yet to come back on my radar.... (hmmm, maybe I should organize my bookshelf like this - Fun no-brain books (my favorites like Twilight, Harry Potter, Hunger Games Trilogy, um, am I a teenage girl or what?); self-help realization books, cancer research books, the classics, etc...

Back to our little vacation. We stayed in this amazing house through my friend K and her husband. I've talked about her before but K is a blond bombshell with killer style, she's well-traveled, cultured, educated and super smart, and happens to be a loving person. If she wasn't my friend I'd really, really hate her. Probably. Her life seems so perfect. I haven't been able to spend much time with her because she works, is a mom to a little girl (Abby's age), travels a ton and has a demanding social calendar! When you combine that with my (less glamorous) full plate it makes spending time together difficult... That being said, it was so nice to be able to spend such quality time with her.

The morning after we arrived I was making some breakfast in the kitchen and was very emotional, silently crying to myself (most likely since it was a quiet moment to myself being away from the chaos of home). She just happened to walk in...and I asked her for a hug. Where I then proceeded to start sobbing like a darn baby. I told her how grateful I was to be there, how hard things were at the moment, how much I miss her and how happy I am to have her friendship. We had a little crying moment and then we just stood there talking for a while about everything. We then went for a walk and it was nice to just chill out.  We proceeded to hike each morning; then each night after everyone else went to sleep we talked, had a dance party, and stayed up way too late...It was nice to bond with an old friend. I realize that I needed that time to be a girl again. Like back in my sorority days - talking, being silly, staying up past midnight, etc. etc.

I have to admit that this process of being a mom and going through treatment is often isolating and lonely. I'm positive I've written about this before. I'm focused on getting Leo the help he needs, Abby staying well and occupied and managing my treatment in addition to regular daily issues. It's hard to get support when your friends are all going through their own issues. Busy, busy, busy. Since I can't get the kind of constant support I crave, I have been looking for other ways to get it.

I've been reconnecting with old friends. Primarily since I feel I've been under "cancer's rock" for quite some time. I went to see an old friend down in Newport Beach and had a fun sleep over with her and her daughter and Abby. It was nice to catch up. I find that sometimes you really don't need to see people everyday to have a strong bond with them and still feel like no time has passed each time you meet and catch up. Plus after that I got to catch up with my dear friend A, who is also in treatment for breast cancer. I love her so much. We have a lot in common and I wish her so much strength..

When I switched Abby's preschool from the one at our Jewish temple to a mainstream school I didn't realize how much I would miss all the moms who became my support last year. I've joined a book club with a few of them (and go when I can), try to have them over for Shabbat (Friday dinner), and catch up at lunches when the schedule isn't so crazy. One of the moms in particular, M, is so caring, always texting me and checking in on me. I love meeting her for lunch, she really energizes me and makes me feel at ease. I'm happy that she has joined my sisterhood. Catching up is so fun and easy and we never talk about other people, handbags, or other nonsense. She is very real and supportive.

I had the same feeling when I saw my sorority sister M for lunch a few weeks ago.  I only get to see her once in a while because she is a working mom with two boys and a hubby who works a ton. We were commiserating how we both feel like no matter what we do it isn't enough, we aren't good at any one particular thing because we are pulled in so many different directions with all of our various responsibilities. We were laughing because friends of hers launched a website claiming to be "mothers who work, parent, and do it "all" while looking fashionable and hot. The so called "Yummy Mummy"...What a crock. Life is all about priorities. There are so many hours in a day and you have to choose how you spend those hours. I'd love to look stylish and made-up all the time but that requires minutes out of my day that I don't have...and what is my priority?

So yes, back to the real issue. I'm lonely. I try to connect with people but often people are too busy with their own lives. That doesn't make them self-absorbed; it is just a fact of life. I try my best not to take it personal.  When I can, I do connect with those friends that really make me feel good, feel at ease, and accept me as I am.

Sometimes I feel bad for poor David who is with me all the time. The author of the Happiness Project wrote about how there's an "intriguing difference in how men and women approach intimacy. Although men and women agree that sharing activities and self-disclosure are important, women's idea of an intimate moment is a face-to-face conversation while men feel close when they work or play sitting alongside someone[...]Perhaps because men have this low standard for what qualifies as intimacy, both men and women find relationships with women to be more intimate and enjoyable than those with men." My therapist has pointed this out is other ways: sometimes I just want to vent and if I try talking to David he wants to help me map out a plan to change things to make me happier. Guys try to "fix" things. Girls listen and provide constructive feedback.  This is why my female friends are so critical to me. Girlfriends have long intimate discussions, bolster your self-confidence, and help you work through your feelings. Female friends are sympathetic listeners.

It is a strange cycle for me of wanting help but not being able to ask for it. Wanting friendship but not wanting to always be the one to seek it out. Sometime the distance grows between friends. You know they are busy but you are busy too.  The question is who should be the one to reach out and connect?

Sometimes I feel like a burden. You know, the whole "cancer mom" feeling. But like Tig Notaro said in her comedy skit, "talk to me"..."someone please, just, talk to me".  Everyone is afraid to tell their problems to the cancer patient. "Oh, well...I don't have cancer but this happened"... It doesn't matter. Cancer patients need friends, they need support. I need friends, I need support. Don't stay away because you're not sure what to say. Go ahead and tell me about your problems. I'm a woman, so that means I am a sympathetic listener and I can be a great friend to you in return!!

Oh ugh...

Now I get it. The Xeloda is really starting to do its thing. My bones hurt and my feet and fingers are starting to get numb.  I haven't felt up to doing ballet (but also last week was incredibly busy with Leo stuff)... The most I can do these days is hiking and walking. (And even that has been a struggle)....

I had an awesome afternoon Saturday with a friend from college I haven't seen in 12 years. Holy moly. It was like I saw her yesterday. She is so incredibly supporting and nurturing. I love you Olivia!!

It is about time I start taking care of myself. I have been pushing, pushing, pushing. But I simply can't do it anymore. I am in tears as I write this. I just can't keep going on like I've been. My body hurts and I'm so very, very tired. As Olivia said, "you are very capable...maybe too capable"... I don't want to sleep or lay in bed all day because that would be depressing but it is difficult to do some basic things lately. I'm figuring out a way to get more help in here. I am going to have to step up one nanny to full time and have two full time nannies. I am so grateful that we have the means to do this even though I feel guilty about spending so much money. The fact of the matter is I have to do this for the time being so I can get well (not just stable in my very hopeful opinion) and my hubby says its okay so I need to be "okay" with that too.

Yogagirl.com Andrea Brook tells me "It's GOOD to be OKAY"...I constantly remind myself of this. If you a perfectionist you are constantly looking for "PERFECTION" but there isn't such a thing. Let go. Be OKAY with being just OKAY for a short time. 

We have talked about moving to a more family friendly street but I have reached my tipping point. We lost out on the house that would have been perfect for us in the Huntington Palisades, it went in a bidding war. That is our second loss in the past 6 months of hard core looking. Instead I am trying to make this house work better for us since we will be here for some time. I have faith that the right house will come to us and if its "meant to be then it is meant to be". Truly I do. In the meantime halting the search means ceasing the anxiety of buying, selling, moving, etc. and frees up more time in the day and makes room in my head for other things (like focusing on my own darn health)...

Updates

I've been on a blog hiatus, only because I've been busy with kids and treatment. Both of which leaving me feeling exhausted and exasperated. I'm still happy that the tumors are stable so I'm doing my best to stay healthy so that they can shrink. I am doing my best NOT to succumb to the cycle of laying in bed all the time. It would be so easy for me to write things off, lay around and watch TV all day eating bad foods. That sounds delicious at times but thankfully, (yes I am super grateful) I have these kids to love and annoy me all day (yes, it is a balance of both). I am working to remain centered and balanced...

I've been focused on getting Leo to walk. Through Westside Regional Center he already has therapies in place; physical therapy twice per week, speech therapy twice per week, and occupational therapy once per week - plus I take him to an amazing physical therapist, Nancy Dilger, who has new, state of the art treatments that he is responding too. This week I had scheduled to take him to the Neurologist for a second opinion and then to the Genetic specialist at Cedars. I thought it could overwhelm Leo and Nancy suggested that we talk to Dr. Michele, the Neurologist first then go from there. We had a lovely visit with Dr. Michele, I was smart enough to pack tons of M&Ms as bribes for good behavior...she diagnosed Leo with mild Cerebral Palsy. It was not what we wanted to hear but are thankful to hear it for two reasons. It is not a degenerative disease and because he live a relatively normal life, (she guessed he will be walking "way before age 5"). Plus having a diagnosis means we have a name to it so we can fight insurance for proper care, we can look into other therapies for have worked for other children, and we can better understand what we are dealing with and find hope in others' successes.

I met with Dr. McAndrew on Tuesday also, it was a full day of family health issues...We discussed the results from Houston, or lack there-of in terms of finding out if there was a trial that was right for me. Dr. Moulder said that the genomic profiling revealed that the cancer was the same as before and the most common but the only new information was that the tumor was Androgen receptor positive but that the trial targeting this was not currently recruiting. Dr. McAndrew also noted that I may be eligible for one other trial that she is going to look into for me. She also brought up that since MD Anderson didn't have anything specific to offer me that I could just stay at Tower for all my scans, etc. I am seriously thinking about it.

 There are two interesting articles I've read, here is the first. Another regarding young women and breast cancer is in a prior post. More to come. I still have a few blogs to post that resulted from my yoga sessions and provided me with so much clarity. "It is GOOD to be OKAY"....

Love,
Jess

Androgen receptor an additional hormonal target in many breast cancers

Published on June 5, 2012 at 12:33 AM 

Enzalutamide therapeutic against androgen

Many breast cancers depend on hormones including estrogen or progesterone for their survival and proliferation. Eight years of lab work at the University of Colorado Cancer Center and elsewhere suggest that the androgen (AR) receptor is an additional hormonal target in many breast cancers. Block AR+ breast cancer's ability to access androgen and you block the cancer's ability to survive.

That's what the drug enzalutamide does, according to a CU Cancer Center study, presented today at the American Society of Clinical Oncology (ASCO) meeting in Chicago.

"Preliminary results are promising and show that androgen receptor blockade may indeed be therapeutic," says Anthony Elias, MD, investigator at the University of Colorado Cancer Center and professor of medical oncology at the University of Colorado School of Medicine.

Elias points out that about 88 percent of estrogen-positive breast cancers, 50 percent of HER2+ breast cancers and 25 percent of triple-negative breast cancers are androgen-positive (75 percent of all breast cancers), making androgen receptors a possible first target for many cancers, or a likely second target for cancers that resist other therapies.

"Targeting androgen receptors may be especially important for patients whose cancers haven't responded to existing treatments that target estrogen or progesterone," Elias says.

The Medivation drug enzalutamide blocks the proliferative power of androgen receptors in breast cancer. In breast cancers that were both ER+ and AR+, the effect of enzalutamide against androgen was similar to the effect of the proven drug tamoxifen against estrogen.

"This is a possible, new first-line target for breast cancer care," Elias says.

Source: University of Colorado Denver

Aggressive breast cancer in more young women, study finds

Aggressive breast cancer in more young women, study finds

Good News...

Returned from Houston late last Tuesday night...the tumors are stable. Now the goal is to stay on the Xeloda and shrink them. Please shrink. Please go away. Please die. Actually, I don't need to be so nice about it. Cancer, die and go away. Lots of other stuff going on. I've started three different blog posts but haven't had the energy or time to finish any of them.  I'll get around to it. I'm just on cloud nine right now knowing that I can take a deep breath of calm. The good news gave me the fuel I needed to stay on course.

XOXOXO,
Jess

Bad Days Anyone?

I've learned two important things this weekend. Everyone has bad days, even cancer patients. That's a serious joke. (Get it, it's an oxymoron).

Here are the two critical pieces of information I must share:
1) Everyone has bad days...(not just cancer patients...)
2) Bad days are not a good time to talk about feelings that start bubbling up...

I made a serious mistake this weekend because I proceeded to have #1 and then continued to do #2. That's funny, in a Beavis & Butthead kind of way but I digress. When you are having a bad day it can simply take over and spiral out of control. Some days it feels like the Universe is out to get you. Like one of my favorite kid books "Alexander and the Terrible, Horrible, No Good, Very Bad Day"...

I get into this bad habit of pushing myself. Many times too hard. That is a hard fact to actually admit. I tend to overdue it and overextend myself. That is when I get into trouble. Saturday was a rough day. It started out so great, I went to ballet, then after class I went to the ballet shop and bought my first pair of pointe shoes. I actually stood up in pointe shoes, as in, a real ballerina. I was so quietly happy with myself. This is a huge milestone in my ballet career. I then went home and rushed in to see the kids.

David was out cycling and the kids were inside playing with the nanny. I got home and was hungry. I should have eaten right then but Abby was complaining about being hungry so I started to make the kids lunch. Abby was riding her bicycle at lightning speed around the kitchen island and ran into me several times. That was irritating. Then I started wondering why the nanny hadn't started their lunch...and started getting more irritated.  After that I started organizing the house since we were meeting with a broker about selling our house. I was rushing around like a crazy person and the more I did, the more angry and crazy I got. As I was organizing the kitchen I thought, my mom and I just organized the pantry perfectly, labels and everything and crap was still just shoved everywhere; which led me to be super annoyed with our help. "We pay all these people all this money and I still have to organize this f-ing pantry?!?!?" I started complaining about them in my head more and more as I started to peel back the layers of disorganization in the various rooms. Ugh, ugh, ugh. I should not have been doing that. And so the bad day began...

Mistake #1 - instead of nourishing my body I deprived it by ignoring my hunger.  Which led to mistake #2 - Gave in to my OCD and started aggressively cleaning, vacuuming, organizing the house with reckless abandon... which led to mistake #3 - Stopped living in present moment, stopped "letting go of the little things"...and all that jazz. I knew it was happening and I even tried to buck up at one point when I was cleaning and take some deep breathes but I couldn't snap out of it. Sometime you just have to experience the bad day and see what it brings up. Many times things that don't normally bother us will surface on a bad day and it can be "interesting" (mockingly) to see what comes about.

I am typing all this because I don't want people to think I am constantly walking around completely relaxed in the present moment practicing mindful awareness with ujjayi breaths, chanting ohms and blowing smoke up my own ass. That would be ridiculous. That is always a goal but I am a living, breathing, idiot human who is constantly working to improve myself.  It is exactly in those moments of struggle that we can say "holy crap!...what it THAT ABOUT?"..."why am I thinking about that" or "where is that coming from?"...

It was one thing after another. I just let the negative thoughts spiral a bit out of control, all the while taking mental notes to come back to them another time and not take them too seriously. Here's some sample monologue: "Wow, look at the lines on my face...why do you care? you could die in two years. Or five. Or one. Or ten. G-d, I hope its 10 or longer.  I wonder if cancer patients can have surgeries? Will I ever be able to get that tummy tuck and fat grafting done to finish the breast reconstruction? Will I die a frankenstein wretch? Do cancer patients get botox? I suppose I finally have to admit that I will never become a famous movie or television star. My looks are totally fading. It is so sad to give up on a dream. I mean, you are just trying to stay alive after all, everything else is icing on the cake. Dang, that really sucks. OMG, you are so vain, who cares. You are a great person, no I'm not, well I should do this, I should do that, I should, I shouldn't, I shouldn't, I am, I'm not, etc. etc." The self-talk just goes on and on and it is BANANAS.

So after not really eating lunch, and snacking somewhat after the broker meeting, David and I decide to go out for a nice adult dinner because I told him a few days before that I wanted to do so on Saturday night. Oh boy. File that under bad idea. I had wanted so badly to have some adult time with the hubby. He's been traveling a ton and I have been stuck in toddler world. That desire, however, was no match for the bad day I was having. After a martini I started to bring up serious, deep topics because they have been brewing and needed to come out. For the love of all things wonderful, please do no do that. I should have said, "I am having a really bad day and I need to talk about some things with you that have really been on my mind but now is not a great time..." And since guys never like the hear they have to have "a talk" (I have heard this makes their balls shrink, hey, I'm just sayin')...so I would have continued with "I have some sad thoughts about my illness and when I am in a  better place I want to talk to you about them"... Instead, I just kept harping on things and bringing up awful topics like my dying and him getting remarried and other nonsense that turned into a horrible fight. That, compounded by a drink or two, is a recipe for disaster because things are said in the moment that you can't take back.

I feel terrible for some things that I said. I can't take them back. I didn't think my thoughts through. I just had, what is a perfect term for this, diarrhea of the mouth. Disgusting. I'm so sorry for David. Facing a terminal illness is difficult but it is also challenging to sort out all the emotions. But its best not to do it on an empty stomach, under the influence, after having the worst day ever. Just remember that bad days happen..."even in Australia"...and even to cancer patients.


Other updates:
Xeloda cycle #3 started Monday night. I am super, duper tired. And Dr. Mao said I'm in a bit of a rebellious phase. I haven't been drinking my herbs. I am doing too much. I'm skipping meals. I'm not eating great (well, sort of, I've been lax about candy since it is in the house after the holidays....but I try to counteract that with pressed green juices. That reminds me of my friend Heather who, when pregnant with her first child told me that she always was in mental agony about what she ate and often found herself forcing down some lettuce or other random green in the middle of the night when she'd had a day of eating too many sweets...LOL).

Mind over Matter

"Opinions are like assholes. Everybody's got one and everyone thinks everyone else's stinks." - Anonymous.

"There is no right or wrong, there just IS" - Andrea Brook, yogagirl.com

"There is no blue print for how to deal with cancer. You can only do your best." - Pam Paige, Therapist

"Anyone who doesn't like what I am doing can seriously SUCK IT." - Jessica Berman

I am learning to speak my own truth. I am trying hard to listen to my body, my heart, and my mind. It is not always easy. I had a wonderful session with my therapist Pam on Thursday. I had to get in to see her because I was having a mini-crisis. The night before I spoke with a seven year metastatic cancer young survivor. She's a tough cookie but scared the living crap out of me. If I wasn't a stronger person I could have spiraled down into a severe depression. It was bad enough that I was down in the dumps for two days after speaking to this woman. I fully processed everything that I discussed with this women. I wanted to hang up on her in the first ten minutes but I didn't. I didn't want to believe what she told me so instead I stayed on the phone with her for an hour and 45 minutes to make her and me feel better. I want to dissect portions of that conversation because I don't want to keep anything in. Since I've been diagnosed my life has been like an open book. Anyone who knows me or even who doesn't know me can read my story here on this blog.  

One thing Pam really helped me realize is that just because you have something underlying in common with someone from a group doesn't mean you're going to like each person within that group. I have been thinking that being in a cancer support group would be very helpful, except I say that while looking through rose colored glasses. You don't always identify with everyone in a group and often, someone who isn't in a good place can suck you in if you aren't strong. The one and only time I went to a cancer support group I thought it was helpful but looking back I recall that two of the six people made me feel depressed. Why would I want to do anything that could possibly make me sad at a time like this? The wordy point I am making is that if going to a support group makes you feel better then you should do it, if it doesn't then there isn't any rule that says you have to go to one! Second point, just because someone else is a cancer survivor doesn't mean you are going to agree with them, their opinions, or their lifestyle. Capiche?

I went to this woman for comfort and instead I was informed about how dire and serious my own situation was...um, thanks? She says that having it in the liver was so terrible. I suggested that it could be worse if I had it in my brain too...she seemed to think they were equally bad. (I am freaking out at this point and thinking, "WTF, do you have a medical degree?!?!"). She went on to say that in her cancer support group she buried two women last year and that she and another friend were the only survivors left. Holy crap, is that something you say to someone who was just diagnosed with metastatic disease?!?!?!  No fucking way.

It gets worse...She then suggested that I analyze what happened in the year since finishing treatment that could possibly make the cancer come back so fast and furious. She said it was angry and that it was pissed. She asked if I took my medications. She asked if I was juicing. She asked if I was resting. She asked if I was taking care of myself. I suggested that I wasn't the best about taking my tamoxifen and that I had taken a serious break from acupuncture... (I felt like a child having to explain to a parent what I had done wrong)... This makes me incredibly angry. THERE IS NOTHING THAT I DID TO MAKE THE CANCER COME BACK. NOT ONE THING. There was nothing within my control that made it come back. Her questions put me on the defensive because asking something like that means that somehow it was within my power to prevent it. Shame on her. It simply just isn't true!!!

The thing is, everyone's journey is different. And every one goes through ups and downs on different days of the week.  Maybe this woman is an amazing survivor advocate but maybe she wasn't feeling it on the day I talked to her. I recognize that and I accept that. What she said didn't resonate with me and I accept that too. Her journey is her journey and my journey is my own.

There is no blue print for surviving cancer. If there was, let's face it, everyone would be doing it and cancer would cease to exist. There is nothing clinically proven that the things inherently within our control will prevent one from getting cancer or having a recurrence. There are possibilities. For instance, if you are overweight you have a higher risk of getting cancer, but you also increase your risk of a myriad of other diseases too. If you smoke heavily you may or may not get lung cancer. If you drink heavily you may or may not develop cirrhosis of the liver or 60 other potential diseases from alcoholism. The old rule "everything in moderation" seems to apply here. As a cancer patient I think I try to control my nutrition, take chinese herbs, mediate, get acupuncture, avoid drinking and more to feel like I have some power over this situation. This sounds wonderful to a perfectionist like myself. It fits nicely in my little box. I can feel in charge of my situation but really the honest truth is that everyone is different and what works for one may not work for another. What I do appreciate about this journey and process is that certain things I am learning and experiencing are true for ANYONE in life. Eating healthy feels good in general. Working out feels amazing too. Avoiding alcohol and sugar feels good too. There are other times when I just want to go out to dinner with David and have a gosh darn martini, indulge in rich foods and enjoy dessert. Sometimes you have to do what feels good too. I know I don't feel great about it the next day but it's not like I'm doing that all the time. Every once in a while you have to just be and enjoy and answer a craving or two.

I don't know if the idea of mind over matter works while dealing with cancer... I'm not going to drive myself crazy trying to figure out what is the perfect way to be when you have cancer. I am learning to find the balance between "ultra organic, green juicing, vegan, meditating, power walker" and "indulging sugar, alcohol, red-meat eating couch potato".  There is a huge spectrum in between.  I'm not going to put extra pressure on myself to be perfect, all we can do is the best that we can.

I am, however, sticking to my mantra to be positive in my everyday life. None of us know when our time may be up. I would rather live each day being positive, creating special moments and feeling good about myself than dwelling on the negatives. There are lots of negatives in anyone's life and it is easier to dwell in them and be depressed. The braver and harder thing is to love yourself. Have a down moment and then let it pass and move on...

The most challenging thing I am learning is to not judge myself. Not judging myself is the hardest thing I am learning to do. This is where my yoga guru is helping me tremendously. If I feel a certain way, don't tell myself not to feel that way which is what I have historically done. Just acknowledge the feeling, the emotion, the thought and say "hmmm. well, there's that. interesting. let it go. it is what it is." Not judging others is equally difficult. But seriously who are we to judge? Everyone has their own process and journey.

I'm learning to love myself. I'm learning to respect myself and my decisions. I'm learning to enjoy what I have, enjoy what I've been given and how I've been blessed in my life. I'm learning to work through my challenges. I'm learning forgiveness. Forgiving myself and forgiving others so I can move on.

I'll keep reading my Pema Chodron and trying miserably to meditate and keep fighting the good fight.
I'm not ready to go anywhere yet.

Other updates:
Tolerating the Xeloda fine. Upset tummy a little once in a while but nothing I can't handle. Blood counts were actually good on Friday. Vitamin D is down for some reason.  Guess I'll take some pills and sit in the sunshine. I've been experimenting to get the right dose of "special cookie" that makes me relax and sleep through the night. It's all natural and it's all right!

Daily fighting with insurance company for treatment for Leo. They want me to go in network. I want him to see the best in our area. There in lies the disconnect. In network is usually not the best. I figured out they require an in-network, out-of-network authorization...oh boy, so that is in the works. He's still not walking but getting stronger everyday and his speech has improved dramatically. It is so rewarding to see. All the leg work with these specialists and the Westside Regional Center is finally coming to fruition.