D O N E..."for now"

The leader of my "mommy and me" group that I started with Abby and do now with Leo (or shall I say had been doing and will do again once I am well) taught me to use the phrase "for now" when talking about our children's habits.  He's sleeping through the night "for now" or She LOVES green beans "for now"...because their little lives keep changing so rapidly all the time.  I think I need to remember that for myself as well.  Remember that I am in treatment for cancer.  That even though I just had my last radiation treatment today that it really is the last of my treatment for now...

I think that has been the hardest part of this fight.  It's been almost a year. It feels like everyone is moving on with their lives. That's a good thing. I need to learn to find fulfillment within myself and my family.  I was thinking just this morning that because David is traveling this week I don't get to finish radiation and go home and celebrate with him. That made me sad. I am happy to be done that is true.  But it would be nice to puncuate the end of my radiation sentence with him.

For the past couple weeks I have been increasingly less social.  I just do not have the energy.  I don't have the energy to talk on the phone. Or email. Or chit chat. That has made my feelings of isolation even worse because I can't reach out to anyone because I really don't have much to say. Nor do I have the energy to listen.  That also makes me sad. I'll get healthier and then I can re-engage (that is if I have any friends left...JUST KIDDING!!).

In some ways, the absence of a social life has made my relationship with my family that much stronger.  I am grateful for that.  We have had to rely on each other through such difficult times.  How lucky I am to have a partner in life like David and two sweet kids. I do so much wish Ben could be here too (some days that eats at me more than others).  We have such beautiful babies.  I often wonder what Ben would look like now.  Sometimes I catch myself telling Leo that he is the most beautiful boy I have ever seen and then I feel guilty.  I'm positive I said the same thing to Ben.  

I came home and slept for about four hours after I got my radiation walking papers. That is not an exaggeration. Geez Louise. It felt good. I still struggle with the fact that my body desperately needs rest but all that sleeping to heal myself means less time with these little munchkins.

A sorority sister of mine sent a message seeking prayers for a friend who is fighting Bone Metastaces ("Bone Mets") that started with Inflammatory Breast Cancer. She had two recurrences and it eventually spread to her liver and bones. She blogs, Toddler Planet, as a part of a community called "Mothers with Cancer". It's a blogging community of 20 or so women. I have been reading these posts for good and bad since the kids went to bed. The good is knowing that many women who are diagnosed with cancer as young moms have done well fighting the fight and still manage to raise wonderful, intelligent and caring children. The bad is reading about all the women who lost their fight and left behind young families. I guess I shouldn't be reading these right now but it's like watching a train wreck. I just can't stop myself. Ugh.

Anyway, here is a post from one of the women who passed away. She blogs a final letter just before she passed away. It is unbelievably beautiful in its honesty.  I agree with her on many fronts.  She left behind 6 children. She lived for only a year after diagnosis... :-(

     My last blog

If you are reading this, it means I have passed. I decided to put some final thoughts together in the hope that it will be of comfort to my friends and family. But also to those of you I never met but who felt a connection to me through this blog.
Blog. I hate that word. It is so silly and trivial. I thought of this as an online journal. One designed to keep my loved ones aware of what was happening to me. I wrote as honestly as I was able. I have looked at many older entries and realized that my feelings about death, dying, and cancer changed as I grew more sick. While I never feared death I often feared treatment.
Cancer treatment is hard. Really hard. The chemo, scans, medications…it is physically daunting. I was willing to subject myself to it all to have even a little more time with my husband, children, and loved ones. It was worth it. I would say that I packed a lot of living into that year while I was dying. I was still me. I was still engaged with my friends. I still was able to love and be here for all of them when they needed me. I still changed diapers and played games. Kelly and I fought like a married couple and loved like one too.
I learned a lot over the year that I battled this dreaded disease. I learned that it is not in our best interest to hold out expectations to God. He is not Santa Clause. He does what is right and good. This was my path. My journey in this world was difficult and painful but important in my spiritual growth. I learned that we have to be happy despite our circumstances. We can’t say I will be happy when…. No sweeties be happy now because today is all you have.
I learned that all the small stuff is very small and not worth your time and attention. Gossip and resentments,worrying about things that never happen, fearing the unknown. Let it go my lovelies, breath and just be good to each other. I realized not long after my diagnosis that life is too short to spend it hurting people and holding onto the anger we have for those around us. I am no doormat, but I just let go of all that hard core resentment. God forgives us through the blood of His Son. He forgives those who hurt us as well.
I am sure that some of you are profoundly saddened by my passing. Death is far more about the living than the dead. But I believe in my whole heart that this is what was meant to be for us all. My friends rallied around us and supported us in every way imaginable. What an incredible gift. That was a lesson in selflessness for them. And in acceptance for my family. My children have many wonderful people to rely on. Their father, step father, grandparents, and friends. I have no doubt that they will be devastated. But in time these wounds will heal and reveal themselves to be battle scars that serve as a testimony to their inner fortitude. My children will move mountains.
Kelly wants to keep the journey going. He intends to chronicle about their lives without me. About the loss and the recovery from tragedy. Maybe you will all be as uplifted and comforted by his words as well. My children will write too, sharing their experience. Thank you all for participating in my life. For providing sweet words of encouragement and prayer. I pray that none of you will ever get cancer, it sucks. But if you do or someone you love does I pray some of my words are a comfort to you all. Have a wonderful life. I will have a wonderful afterlife.
Andrea Collins Smith

Almost there!

They are radiating the shit out of my skin. I am using - Aquaphor every night slathered all over, aloe vera gel, aloe vera plant (this is the best), calendula gel, and 2.5% prescription hydrocortisone.  The doctors and the technicians are all amazed by my how "well" my skin is holding up (even though I feel its pretty gnarly).  It's now pretty red and sunburned though...they say to keep doing what I'm doing because it is working (otherwise I would have been really burned early on).  Oh that and my green smoothie every morning with Glutamine and Mangosteen...

Agi was back as of Tuesday, phew.

Still feeling the three T's - toasty, tired and tight.

Monday is my last day of radiation and it can't come soon enough.  I just want to put this behind me and start to feel better.  I've decided I am STILL going to do the Avon Walk in Santa Barbara.  It will give me something to train for and I always do better when I train for something.

I'm waiting to hear from Dr. McAndrew if I have to continue with the Xeloda after I stop radiation...if I get to stop that will help me get better so much faster.  My blood has taken a beating and it needs to heal too.

Harry Potter this weekend if I rest enough first.

Abby and Leo are delicious.  Abby is loving her Bee Planet drop off program.  She actually WANTED to go this week and after I dropped her off she gave me a kiss and said "bye Mommy"!!!  Made me sad because I know she's growing up.  So I went home and snuggled with my big boy Leo.  Oh, he is just the most yummy, kissable, squeezable, happy, mellow baby.  I love them both.

In the trenches...

I feel so bad for my poor mom.  Poor Lady. She is really in the trenches with me.  On Tuesday my nanny Agi left to go for her usual hike up Westridge.  Dun dun duh... 10pm that night I got a text from her that she sprained her ankle and couldn't walk on it.  Of course I was concerned for her but...geeeeez, I was also concerned for us.  What the hell were we going to do?  My mother in law is recovering from hernia surgery. Agi is down for the count. David was traveling. Thankfully Jessica, our new fabulous college student babysitter came the next day for a few hours but that was it. This week was just me and my mom.  We ordered out every night.  There is NO food in this house and grocery shopping isn't high on the list right now... I really feel like we are fighting a war and all the reserves have been called back.  No ground support. No heavy artillery. Just me and my mom muddy in the trenches without ammunition waiting for reinforcements...

All in all, this week was VERY difficult.  I already have NO energy. Zilch. Zip. Nada.  I am pulling from every fiber within my body to drive myself to stupid radiation and then drive home to be with either Abby or Leo (he's much easier to deal with considering my energy level) for the remainder of the day.  Mainly I put Leo in the bouncer and I lay on the couch and look at him. Or I put TV on for Abby and lay down with her.  It's "resting" per se but not the true kind of rest I need.  I try my very hardest to stay awake.  If Leo napped then I tried to sleep but newborn naps aren't predictable so usually what happens is just as I get to sleep he'd wake up.  Abby is the better napper but Tuesday after Bee Planet she decided she wasn't going to take a nap.  She screamed at me for like a half hour and I gave up.  Thankfully David flew home and was able to take us the the Country Mart for dinner and then put her to bed.

Ugh. Ugh. Ugh.  My skin is really sunburned and tight.  There is dimpling now around the expander.  Or rather, the skin is so tight it is revealing the exact form of the expander.  That's kind of depressing. I hope it doesn't stay like that.  Dr. Hayden assures me it won't but who knows.  I know that it isn't what is important.  Living. Breathing. Being. Those are the things that are important.

Thank you for all of your messages. Please be assured that I read your facebook messages, emails, texts, and blog comments.  They mean so much to me.  Wish you could all be here to take care of these kids so I could sleep. Or cook us some food. Or go grocery shopping for me.  I'm so damn tired.

Anyway, I just confirmed with the radiation technicians that my last day of radiation is Monday, July 25th.  I just completed 27 of 28 of the "normal" sessions.  Then 5 of the "boost"...that's when they really fry, er I mean, target your skin.  She also told me that the radiation keeps "working" for 2 weeks after I stop the sessions.  So the skin will keep reacting for 2 weeks afterwards.  Shit. Shit. and Shit.

Almost done.  Almost there. I can see the light at the end of the tunnel.  And Agi is coming back to work this Tuesday.  Hallelujah.

Oh, and I also hear that it may take me a year to fully recover to my old self.  Actually, what I will recover to is a NEW normal since I will be on lupron and tamoxifen for the next five years.  What fun for me!!!  Aren't you jealous? I get to suppress estrogen and ablate my ovaries for five years. But that is the next goal.  I need to make it five years to be out of the woods.

Here is the mediation that is taped to my bathroom mirror that I say every night and morning when I brush my teeth.  (DAVID - I don't want any snide comments!).  If I had time and energy I would do it the way that it is recommended but instead I just READ it when I brush my teeth or wash my face.  The only one I can remember when falling asleep is the metta mediation (the loving kindness mediation). Anyway, I leave this for you to explore for yourself.  Good night!!

Healing Ourselves

This meditation can help us discover an underlying cause for an ailment and/or begin to release and heal it.

Sit or lie down breathe, and relax deeply.  Starting with your toes, feet, legs, pelvis and so on, put your attention on each part of your body in turn and tell it to relax and let go of any tension.  Feel all tension dissolving and draining away.  If you wish to, do the meditation on opening the energy centers in order to get your energy really flowing.

Now imagine golden, healing light energy all around your body… feel it…sense it…enjoy it.

If there is a particular part of your body that has been ill or is in pain, ask that part of you whether it has a message for you.  Ask whether there is something you need to understand or to do, right at this moment or in your life in general.  Remain quiet for a few minutes and notice if any words, images, or feelings come to you in response to these questions.

If you get an answer, do your best to understand and follow it.  If you don’t get an answer, just continue with the process.  The answer may come to you later, perhaps in a different form than you expect.

Now send special loving, healing energy to that part of you, and any part of you that needs it, and see or feel it being healed.  You may want to have your guide, or any master or healer, there to help you do the healing.

Picture the problem dissolving and flowing energy away, or whatever image works for you.

Now imagine yourself in natural, perfect health.  Think of yourself in different situations feeling well, active, and healthy.  Imagine nurturing and caring for yourself so you stay healthy.

l

Affirmations

I am loving and healing myself on all levels – spiritual, mental, emotional and physical.

I honor and respect my body.

I listen to my body’s messages.

I am learning to take good care of myself.

I love and accept my body completely.

I am good to my body, and my body is good to me.

I deserve to be healthy and feel good.

My body is balanced, in perfect harmony with the earth and the universe.

I give thanks for ever-increasing health, beauty and vitality.

It’s natural to feel good.

l

From now on, each time you do this meditation, picture yourself in perfect health, with golden healing light around you.

Wrote a song 'bout it...

Remember that show In Living Color?  I loved that show.  There was this act where this guy, Calhoun Tubbs, would sing the blues, he'd talk then say..."wrote a song 'bout it and it went a little something like this...ah ha haaaah."  Just a random thought I had to make you smile if you remember it. I found the video on youtube so enjoy..."I've been a success at being a failure...for over 75 years...ah haaa haaah. Thank you very much!"

So I'm tired....and I wrote a song 'bout it. Like to hear it go! I was joking with my mom and said I figured out the best song to explain how I feel.  There's a song by Sublime called "Two joints" (probably a remake).  The song is about a pothead who smokes two joints in the morning. He smokes two joints at night. He smokes two joints in the afternoon, they make him feel alright. He smokes two joints before he smokes two joints and then he smokes two more. You get the idea. Anyway, replace the smoking with naps and that's my song.  I take two naps in the morning, I take two naps at night. I take two naps in the afternoon, they make me feel alright. I take two naps before I take two naps, and then I take two more.  Anyway, I'm punch drunk tired and I laugh at really ridiculous things.  So maybe that's not too funny but it is when you are delirious.

I also laughed because on the way to radiation the other morning these are the two songs I heard - Rick James' "Give it to me Baby" (lyric "I'll betcha I'll make you holler till you've had enough") and Nelly's "It's Getting Hot in Here" (lyric "so take off all your clothes").  These are very inappropriate songs but totally appropriate for radiation. Right??!?

I've started reading the book "When Bad Things Happen to Good People" and watched the Louise Hay DVD about how "You Can Heal Your Life".  I really like both of them.  They are both helping me.  I now need to read her book after I finish Rabbi Kusner's book.

I want to talk about forgiveness.  It's important to have an open heart.  I love Oprah's quote on forgiveness. She says that "Forgiveness is letting go of the hope that the past can be changed"... These are the things that I am working on.  Moving forward. Letting go. Forgiving myself. Forgiving other people.  Looking with hope to the future but staying very grounded in the present. BE PRESENT.

I wouldn't say that I've repaired the relationship with my father but I will say that I have let go of the hope that the past could be changed.  I have forgiven him for things that cannot be undone.  We haven't talked about the past but I'm not sure its important to, is it?  Is it important to acknowledge that things weren't great at times and emotions were hurt or is it better to move forward and start anew?  Isn't that forgiveness?  Not to dwell idly in the past.  What good is that?  The past is gone. The past is history.  The only thing we can control is the present. I don't think its prudent in any way to voice the anger I have about things in the past (except to my therapist maybe, then move on).  I'm sure he knows that he hurt me in many ways.  Why remind him of that?  Do I need an apology?  The only apology I needed was HIM making the effort to be in my life and my children's lives.  Small steps.  He made that effort.  He sought out to be a part of our lives. I honor that. I honor that intention.  Now there are no negative thoughts or angst towards him.  He's had several visits with the kids and they were lovely.  No expectations either.  I suppose I'm just letting things unfold and play out how they may.

I'm only thinking positive these days (*this is very hard to do but I say affirmations which help).  If there is anything negative I remove it from my life.  I don't have the energy to deal with any external pressures.  I loved hearing from so many of you after my last post. It really made me feel loved and helped me regroup for this battle.  I'm fighting the fight people!!!!

Oy. I mean it. Oy.

For those of you that are still out there and read my blog I really appreciate you!  I've had several people randomly tell me that they've been reading my blog and I am sincerely touched by that.  I hope that I am helping people with this blog or at least I hope I'm entertaining.  It does help to hear from you. Lately I've felt like screaming out "I'm sick, not DEAD!" many times because it gets very lonely and isolating. I've talked about that in the past but I think many people shy away from someone who's battling cancer or any type of major illness because they don't know what is appropriate.  I'm telling you right now I was in that same boat before I got sick.  Until you go through this or someone very close to you goes through this you can't fully comprehend how challenging it can be to fight this fight.

When I was first diagnosed someone told me to expect a year of hell.  It is turning out to be the most true advice.  It seems like it will be a year to the day that I will be in the hard core treatment phase (radiation finishes end of the month and then eight plus weeks after that I will have the final reconstruction surgery). My treatment plan seems like it is progressing, that's true to an extent, but it is also cumulative in it's progression.  In the beginning it was chaotic and I was busy trying to navigate through uncharted waters. I was a cancer neophyte trying to understand what I needed to do and what was happening to me.  It was akin to drinking water straight from a fire hydrant. It all started with a huge blast but now the water hose is attached so it "appears" more manageable.  It was the same with the support I received, tons of people poured in their help at the start but now it trickles in... I don't say that for you to feel sorry for me, I say that because I want you to understand what happens over time.  Radiation is hard but it's harder to see. Chemo is hard too but the fact that you lose your hair makes it easy for people to see how toxic the treatment is.  When people see my hair growing out and me looking more "healthy" they must think radiation is easier...but it's really not. All of this is cumulative.  It keeps building and building.

I'm sure part of the problem of feeling lonely is that I don't like asking for help, I've never been great about that. I don't want to be a bother to anyone. I've always done everything myself. To a fault. Currently though, the reason I don't ask now is twofold: 1) this has been going on for quite some time and I feel like I've exhausted people, resources and hospitality and 2) I don't know how people can help me really either.  What can someone do for me when all I want to do is sleep all day but can't since I've got two little kids?  Instead I end up exhausting the core group around me - David, my mom, my mother in law, my nanny, and our housekeeper.  We are all exhausted. Whew. I do not know how I can remedy that.  Any helpful ideas?

So what is appropriate or what have I enjoyed the most that makes my days brighter?  Check in with the person.  Even if it is just a text or an email that says, "hey, I thought of you today" or "hey look at this picture of my kid, isn't he funny" or "hope you're having a good day today" or even just "XO"...you get the idea.  I certainly don't expect people to invite me to dinners or parties or trips or anything like that (even though it is nice to be thought of even if I can't, yes, like I said, I'm sick NOT dead!!") because the energy required for me to do anything like that just isn't available right now but I love to know that someone is still thinking of me so I don't feel so "out of sight, out of mind".  Anyone, even if they are not sick, likes to know that someone is thinking of them.  Am I right?

I'll get off my SOAPBOX now...

The kids are doing great.  Leo is so delicious.  I mean it. I want to bite his big, fat thighs. Abby is delightful and is growing up so fast. It makes me proud and sad at the same time. She started her first "drop off" program this past Tuesday at Bee Planet.  She's done so well with it. Gosh, school for her is going to be here before I know it. Even her face is not looking so much like a baby anymore. She's becoming a little girl.  She's still precocious as ever but I appreciate her curiosity. She's talking in these really long sentences and it makes me laugh out loud (even when she's doing something naughty which makes disciplining more difficult to do while trying to keep a straight face).  They both make my days so bright.

As for me...radiation is really kicking my ass.  This is so much worse for me than Chemo.  Chemo is definitely more toxic to your whole body but let's now forget that I have to take that stupid 5-FU low dose chemo pill during radiation too which is like a double whammy.  I am so tired.  More tired than I've ever felt.  As if I haven't slept in days; as if it's just not possible to "catch up" on my sleep.  I try so hard to rest but I have so much to do now AND I don't have the second nanny.  I know that may sound ridiculous to many of you but I try to make sure my mom and mother in law aren't taxed out so I try to make sure they get chunks of hours away from all this chaos to clear their heads.  That way they can come back somewhat refreshed and ready to help some more.  Anyway, I am trying to manage - daily radiation, rest, activities with Abby (aka glue baby), rest, physical therapy, rest, doctor appointments, rest, sneaking in time for Leo, rest, eating, grocery shopping, rest, cooking dinner, all while driving all across town with very heavy eyelids. Life just sucks right now.  Ugh. Ugh. Ugh.

As an example, here was my day today:

• 7:45 radiation (try to rest when I'm on the table; had to wait today but usually I am the first patient of the day so I get it over with)
• 8:15 done, stopped at UPS store to mail something, drove through car wash to kill time before PT, ran into Bill Harmsen, who always gives me a big hug (he's 6'8" or something!)
• 9:00 physical therapy (try to rest when they are working out the lymph cording in my arm, side effect of the surgery, I almost have full range of motion in my left arm though now!)
• 10:00 race home to be with Abby before Bee Planet drop off.  So tired at this point I am literally just laying on my mom's bed with eyes closed while Abby plays with a toy and asks me questions I can barely answer; then we get a delivery for party rentals because David is having a work party here at 5:30; my mom and I help get that situated...)
• 11:00 drive Abby to Bee Planet in Temescal Canyon for drop off.  I want to be the one to do this until I know she is truly comfortable with the process. (stay till 11:40 talking to Miss Laura, whom we love, love, love - Flaky people who drop out of class last minute we do not, I am seriously bummed if she has to cancel the Tuesday class)
• 11:50 Dr. Hayden's office to see Dr. Kao since there is some weird skin reaction near my incision site from the radiation; 45 minutes later I learn it is from post-inflammatory hyper-pigmentation and I need some special cream that no one in Los Angeles has since it is on back order...great)
• 12:30ish Pick up Kale salads with Tempeh from Veggie Grill. Sit with eyes closed waiting for food. Realized the day was almost half way over and I had been running around without my breast prosthesis so I just kept my purse covering my larger breast.  Who cares really. I have a hair cut like a boy, I'm not wearing make up and I have picasso boobs in public.  Big deal. 
• 1:00ish Get home and am so tired can't decide if I should sleep in the car or go inside and eat. Leo's up having his bottle and greets me with a HUGE smile. Ahhhhhh, who said I was tired again?  Play with Leo for a little bit then go upstairs to eat. 
• 2:00 leave to go pick up Abby.  My mom, with Agi and Leo in tow, is in the car to go get her and I come racing down the stairs because I want to be the one to pick her up.  I know I can be controlling about things but I really want her to understand that I said I would be back and then I came back.  So we all go.  She was really excited to see all of us.  
• 2:30 get home and I am a mess.  Abby is super tired too but since I am starting to stretch her nap she fights to take a nap....my mom finally gets her down about 3:30.  I finally get to nap then too. Oh but crap, I forgot I have an appointment with my therapist.  I am torn. I really need to talk to her but I am way to tired to drive over there and I need a nap.  I've been in such a funk I could use the mental help but opt for the nap instead.  
• Nap from 3:45ish to 5. Oh darn. Forgot about the party. I could hear things getting set up downstairs. I still look like a boy. Oops.  Get dressed and put on some make up. 
• 5:30 wake Abby up. She's a hot mess. Oscar the grouch has nothing on my daughter.
• 6:00 party starts and the caterer hasn't showed.  Thankfully it's not my party to deal with so I'm not stressing.  What stresses me out is trying to dress Abby who apparently wanted to sleep 5 more hours for her nap.  Oh well.  People are invading her house so I get it. 
• 6:00 - 9:00 try to eat, have a conversation or two all while keeping on eye on my little monkey. Boy she's in rare form when guests are here. My mom said she's being great and I guess she was but I also just wanted to sit in the corner and not move...but Abby is very, very mobile.  
• 9:00 Get Abby to bed (that is one hour past her bed time)
• Wash make up off face, brush teeth, take chemo pill, take 37,894 other pills, drink a bio-k then typed this nice little note that kept me up WAY past my bedtime.  The nap really helped though.

That's all there is. There is no more. But that's why the title is "Oy. I mean it. Oy"!!!  

Goodnight. 

Life is a Z o o...

I finally took Abby to the zoo. YAY!!! (I can get rid of that mother guilt I've put on myself for wanting to take her but not being able to as of yet).  It worked out perfectly.  They moved my radiation to 7:15 because they were having a meeting so I was done by 7:30.  Had breafkast with Abby, made my power green smoothie, my mom made our lunches, packed our crap, er I mean, gear in the car and was ready to go.  Out the door by 9:15 to arrive at the zoo promptly by 10AM when it opened.  We met my friend Leigh and her twin boys, Oliver and Noah for our special trip!!

Thanks to a good friend from high school, Thomas, we had an exciting day planned at the zoo and it was all totally comp'd; Super V I Cheese. Thomas works at the LA Zoo and had two surprises in store for all of us.  A seal feed and a giraffe feed!!!  Abby's never been before and I haven't been since I was in elementary school. This was the most amazing way to see the animals, going behind the scenes to see how the zookeepers operate. Pretty snazzy.

Abby, aka Miss Bossy Pants, during the Giraffe feeding kept telling Artemis to walk.  "Walk Giraffe, Walk!!" And so he did. What a sight. I can't wait to stay at Giraffe Manor some day. African safari we are so there!!

After the feedings we walked around the zoo. We saw the orangutans, flamingos, meerkats, and then stopped to eat lunch at the stadium steps overlooking the chimpanzees. We all really enjoyed that too.  (Mental note - I am laughing at Leigh changing Oliver's diapers on the steps...hilarious!!!)

Thank you Thomas for the most amazing day!!

Here is Abby feeding the Giraffe named Artemis, he is 19 feet tall:

Here is another of my kiss from Mira the seal, it was really cool. Literally, cool, the water they live in is 60 degrees, but it felt awesome:

And finally, here we both are telling Mira to spin, jump up, and wave bye bye. The funniest thing is in another video when Abby first saw the seal "slinking" out of the water bouncing on it's belly, she screamed with glee and said "LIZARD!"



Today was radiation number what? 18?  Oh, I 'm getting close to half way being done!  I get a break on Monday for the Fourth of July which will be very nice and very much needed.  This morning after radiation I was so sleepy driving home. I got home and went to bed and could not get out of bed for three straight hours.  I don't know if it was the zoo or radiation but it didn't matter.  What an amazing day creating memories with Abby and friends.

Still here...

I'm still here and I'm still pushing.  Just finished 15 of 35.  Geeez... That's still not even half of the way over.  I am basically doing 6 weeks of radiation then a "boost" of one additional week that focuses directly on the area where the cancer was growing. I saw my radiation oncologist this morning (love her) and she seemed very pleased with how I am doing.  The burning is keeping at bay for now, my mixture of udderly smooth, olivamine lotions and aquaphor seem to be doing the trick.  Fingers crossed. The fatigue I am working on...basically I conserve all my energy to be able to do something with the kids. Abby or Leo. I can't do many activities which is hard for my personality to accept.  Yesterday I took Leo to babygroup.  Today I took Abby to a swim lesson and to play at the jonathan beach club.  Then I can't do anything else.  I tried to nap when she went down for her nap but here I am...typing in my blog instead.  I lay here and lay here and my mind will just not shut off.

I'm going through my treatment but it's not just the physical aspect of fighting this disease that is plaguing me.  It is the spiritual and emotional tenets.  I am constantly evaluating and judging myself, my beliefs, and my actions.  It's as if deep down I am wondering if there is some causal link between my own actions and the fact that I got cancer.  I know that medically no one could prove it but I wonder if it is possible.  There's a woman named Louise Hay and she has a successful line of "heal yourself" products.  Now, I haven't read any of her books and I have one of her DVDs here but I still haven't watched it but if you are able to "heal yourself" is that also saying that you can CAUSE a serious illness like cancer? It is the concept of "dis-ease" that can cause disease.  Furthermore, that's like saying if you live a bad life you are bound to get disease.  If you live a good life you will have less or no disease. That's a ludicrous thought. Having said all that, I don't believe that I caused my cancer.  Plus if that were true then you could expect all these despots in the world to rot with disease early on but many of them live on well into their 80's and 90's...like Teodoro Obiang from Equatorial Guinea (where 70% of the population lives on $2 a day) whose son jets around on a $36MM jet to get to his $35MM mansion in Malibu and who has commissioned a $380MM superyacht...

Two incidents are really bothering me (the mind-numbing current state of the World doesn't effect me as much since I have accepted the fact that I have no way of controlling something that huge):

The first - a wonderful nurse at my pediatrician's office has told me in the past about a friend of hers who is battling cancer.  I don't have the full story or details but she told me last week that her friend was "stopping treatment" because she learned she had damage to her heart from Chemotherapy.  That she was undergoing radiation but stopped when she learned she had leaky heart valves.  I asked her what stage it was and she said it was "not the best prognosis"... she had 12 involved nodes.  TWELVE.  I had 15 of 19 nodes.  I am stage IIIC.  Why is she giving up?  This disease is curable.  I don't understand that situation at all.  It boggles my mind.  All weekend I could not stop thinking about it.  Of course I do not know this woman nor do I have the true details of her case so it makes it that much more of an enigma.  Regardless, hearing that someone would stop treatment was so disheartening.  It's as if she decided to give up because she was just "done" with all of it.  I can fully understand being so exhausted with all of the treatments, protocols, etc.  I totally get the feeling of just wanting to be "done".  But you have to DO the work. No pain, no gain. This is the seventh inning stretch.  The 25th mile of the marathon.  KEEP GOING!!  I gave the nurse my info so this woman could call me if she wants to talk.  It helps so much to be able to connect with people who have and are going through the same thing.  I rely on Annie and Sharon, my two pregnant with breast cancer sisters, so much.  They are crucial to my treatment.

Before my own diagnosis the only person I knew with cancer was a beautiful woman named Heidi who was married to David's best friend.  She was diagnosed in her early 40's with colon cancer at a late stage.  Colon cancer is so incredibly forceful and aggressive.  Because it was late stage, the odds were not in her favor.  Undergoing conventional treatment at that time would only give her a 5% chance of beating it. She opted instead for holistic and experimental treatments in Mexico.  I didn't understand it but knew it was her decision.  In the end she passed away a year after her diagnosis.  And at the end of her treatment she decided to do the conventional therapy but it was just too late.  There's no way of knowing now if she had done the conventional therapy in the beginning if she might still be alive today.  But it was HER choice.  We are the only ones who control our destinies and I get that.  I really do.  Although I still have an opinion and I would want to tell the nurses friend that she can't give up.  She just can't.  If you have the ability to throw everything in Eastern and Western medicine at your cancer to send it straight to hell, why wouldn't you?  Her chemotherapy is over so she won't have more damage to her heart. She would just have to finish radiation and that doesn't effect your heart.  There's obviously large pieces of information missing from that story which is why it doesn't add up but that is exactly the kind of puzzle that my mind loves to currently obsess about...

The second incident is a woman at a preschool where Abby does a toddler program.  She was diagnosed  in January with colon cancer and passed away 84 days after her diagnosis.  She was an architect and from what I hear, a beautiful and loving wife and mother to a 4 year old boy and 1 year old twins.  How can life be so cruel?  The husband doesn't know me but I wish there was something I could do for them.

I've got so much on my plate but all I can think about is how I might possibly help these people.  It's mostly because I know that helping them would help me too.  We are a community of individuals.  We thrive on the support of others.  Reach out and lend a hand to someone today.  Corny but true!

Numbers

I'm trying to better understand my prognosis, the tumor, the cancer...

The pathology from the mastectomy showed that my tumor was 3.2 centimeters which was successfully reduced from somewhere in the 6.5-8cm range when I was first diagnosed.  I had 15 of 19 lymph nodes that tested positive for cancer.

When I was first diagnosed my tumor grade was rated using the Bloom-Richardson grading system as moderately differentiated, which meant it wasn't the most aggressive types of cancer.  Unfortunately, after the pathology came back from the mastectomy they upgraded the cancer to poorly differentiated.  My tumor grade is 8 of out 9. I've always had high grades in classes and graduated with honors from Berkeley but this is one exception where a high score is NOT a good thing. The tumor grade helps determine your prognosis and treatment plan.  In my case since I was pregnant at diagnosis the only treatment plan was neo-adjuvant chemotherapy to shrink my tumor and kill any cancer cells that may
have spread throughout my body. Here is more from wikipedia:

• The Bloom-Richardson grading system is a breast cancer staging system that examines the cells and tissue structure of the cancer to determine how aggressive and invasive the cancer is: 
• What percent of the tumor makes normal duct structures? In cancer, there is a breakdown of the mechanisms that cells use to attach to each other and communicate with each other, to form tissues such as ducts, so the tissue structures become less orderly.
• How many mitotic figures (dividing cells) can the pathologist see in a microscope field? One of the hallmarks of cancer is that cells divide uncontrollably. The more cells that are dividing, the worse the cancer.
• Are the cell nuclei uniform like normal breast duct epithelial cells, or are they larger, irregular, and darker (pleomorphic)? In cancer, the mechanisms that control genes and chromosomes in the nucleus break down. Irregular nuclei are a sign that the mechanisms that control cell reproduction are breaking down.
• Each of these features is assigned a score ranging from 1 to 3. The scores are then added together for a grade that will range between 3 to 9. This value is then used to grade the tumor as follows :
• 3-5 Grade 1 tumor (well-differentiated). Best prognosis.
• 6-7 Grade 2 tumor (moderately-differentiated). Medium prognosis.
• 8-9 Grade 3 tumor (poorly-differentiated). Worst prognosis.
• Lower grade tumors, with a good prognosis, can be treated with less aggressive surgery and medication, and have a better survival rate.
• Higher grade tumors must be treated with more aggressive surgery, radiation, and drugs with worse adverse effects, and have a worse survival rate.

Overall my staging is considered Stage IIIC.  That is much further along than any of us expected.  None of my doctors are saying anything dreary or negative but it is what they AREN'T telling me that makes me worried.  They really are throwing in "everything but the kitchen sink" to treat my cancer.  Two different rounds of chemotherapy.  Mastectomy and lymph node dissection. 35 rounds of radiation plus a low-dose chemotherapy pill to boot.  Holy crap. This cancer better be dead and then some.

Today after radiation I felt some burning on the incision site of my breast. Nothing major, just mild burning like a sun burn.  I kept putting lotion on it all day.  I had number eleven today.  I'm not even close to being half way done. I hope that I can keep the "burn" like side effects at bay with my potions and lotions.

But the BIGGEST side effect is this fatigue that has started.  Today I really wanted to take Abby to the zoo.  I tried so many times to get her dressed and she just wasn't interested and I didn't want to tell her we were going to the zoo quite yet because if she got too excited and I couldn't deliver then I would feel terrible.  I already knew how tired I was when I woke up and I couldn't shake it off...so I figured I might not make it.  Leo has a lingering cough (one of the lasting effects of RSV) and he had an albuteral treatment Monday at Dr. Gordon's office that seemed to help.  When I heard Leo cough a few times I decided it was much more important to take him for another treatment that it was to go to the zoo.  She went with Agnes to the park instead.  Leo and I got home from his treatment and he went to nap and I thought, "hallelujah"!!, I'lll get to nap too before Abby gets back.  I literally could not keep my eyes open one second more so I slept on the twin bed in Leo's room.  Not even half an hour later he woke up.  I was so desperate to get that nap and it just didn't happen. My body hurts I am so tired. I need to work on my energy level.  Stupid radiation.

Perhaps walking or hiking would help?  Or Ballet?  I just don't feel I have the energy to do anything though.  They say movement and exercise will help relieve fatigue so I guess I better try it.  I have to figure out something that I can do that doesn't leave me feeling guilty or selfish like I leave my kids with people all day so I can go workout.  I know I shouldn't feel that way since taking care of me is what I need to do right now but I still have those thoughts.  What I really want is to just lay in bed all day.  I want to check into a hotel and watch movies all day for a week.  How selfish is that? Except I love my husband and I love my kids so what the heck am I supposed to do?

I went back to acupuncture too yesterday.  And I'm drinking the horrible chinese herb tea prepared just for me (that tastes like drinking black smoke, its the oddest thing). I'm hoping the herbs and acupuncture start to work ASAP.

All that being said my therapist is helping me acknowledge that I should be proud of myself for ALL that I am doing.  That I shouldn't judge myself so harshly and be so critical.  And I am proud of myself.

I've even made dinner three nights in a row even though I am exhausted!  That is an accomplishment I am very proud of...healthy dinner the whole family can enjoy.

And now I am going to sleep at 9PM....

Back by popular demand...

That means this is for you Grandma and Auntie...and any other of you supporters that are still out there!

Lots of things have been happening but it's just more of the usual for me...

Here's a typical day for me.

Wake up to Abby or Leo around 6, 6:30ish. They alternate.  Leo is sleeping through the night. He is such a good little baby boy.  He's 22.5 pounds at 6 months.  He is gorgeous with big blue eyes and fair skin like his sister and chubby folds on his arms and legs.  He smiles all day long and rarely cries except to tell you he's tired or hungry.  I was so worried after Abby's demanding antics that having a second one could be just as difficult as the first but he has such a mellow temperament that we are truly blessed.

I get dressed. Race downstairs to either make Abby breakfast or help her "help" me make my super green smoothie and a sprouted grain english muffin (with earth balance butter and strawberry preserves).  Race out the door to radiation...

Every morning, Monday through Friday
7:45AM - RADIATION

• It takes about ten minutes, most of that time is setting up my body on the special "body form" that they use to position me for the lasers and the beams.  I lay there with my arm above my head and close my eyes while the linear accelerator machine does it's magic. There are three different positions that they beam me at.  I do not glow. I do not emit radioactive rays of any kind. I change then race back home.  I have to do 35 (THIRTY FIVE) rounds of radiation.  As of today, Wednesday June 22nd, I have completed 11.  They told me when I first started that the effects of radiation really start to take their toll after round 10.  So far I am hanging in there.  I started having a skin reaction like a mild sunburn but I feel I was able to nip that in the bud using various lotions made for radiation (I prefer "udder cream" to the mediaderm) and aquaphor.  That seems to be working for now.  I have to be religious about applying the salves so that my skin can maintain the moisture it needs to battle the radiation.

After radiation my day varies.

• They usually consist of time with Abby and Leo. 
• Physical Therapy (I have been hard core dedicated to this because I want to regain full range of motion with my arm from the lymph node dissection and surgery).  
• Exercise of some form, pilates or ballet (both of which have been difficult to do because radiation has started to make me very tired) or maybe even a walk if I am really being ambitious.  
• Errands, like dry cleaners or grocery shopping or mailing things certified mail last minute to the IRS...you know that kind of thing.  Ha ha ha. 
• Then lunch.  
• Then I *MUST* take a nap or I am an absolute mess.  Sometimes my intent is to nap and then I just lay there and lay there and my mind will not rest.  I then try to do my loving kindness mediation or my Dr. Mao mediation and sometimes that works...sometimes it doesn't but at least my body has been still for a while.  My mind on the other hand needs to take a chill pill. 

Wake up, play with Abby or Leo then prep and cook dinner.

• This is a new thing for me to do this week since I let one of my nannies go on Monday.  There were too many people here and she wasn't pulling her weight plus she had started getting too comfortable and developing an attitude.  I found that so disheartening particularly because she was getting paid the most.  She continually was doing things wrong and it almost seemed rebellious.  Oh yeah, and she damaged our car to the tune of a grand and claimed that she didn't do it...um, she was the only other person who drove my car.  Anyway, we are left with one nanny, Agnes, and she is still fabulous with an uplifting attitude and a warm smile. She is wonderful with the babies and the house.  
• Most importantly though I couldn't do any of that without the help of my mom and my mother-in-law Sue.  They are here night and day (in that order) making sure things are taken care of, that includes me.

After Dinner, Sue gives Leo his bath.  We quickly clean up the kitchen then head upstairs, sometimes reluctantly, for a bath, brushing teeth, books, rocking then bed.

After Abby and Leo are down, I do maintenance.  Wash face, brush teeth, and use my magic potions plus aquaphor on the radiated area.  Today I even did plies while brushing my teeth.  I am obsessed with trying to do them correctly.  For some reason when I do them I stick my butt out like a duck and APPARENTLY that isn't proper form...so I'm trying to practice them against the wall so my rump can't stick out like Daisy Duck.

After that I will do some stretches on the foam roller or PT exercises for my arm. Or I could watch TV in bed with David when he's in town, or I will read a book...or like 2 pages of a book before I pass out from exhaustion.  Being exhausted is good in a way. I know I am accomplishing a lot and that makes me feel good.

Referring back to my mind that won't chill...well that happens at night too.  I start thinking about all the things I want or need to do and then I can't sleep.  I started taking trazedone to calm my mind...

PLUS they have me on singulair (which is an asthma medication but for some reason has been shown to help relieve inflammation in patients undergoing radiation) PLUS lexapro (which is an anti-depressant, chemotherapy can have lasting effects on the brain so anti-depressants are prescribed to help regulate seratonin levels), PLUS I have the lupron shots (so I am in forced menopause, I tell you the hot flashes are not my favorite) PLUS I am on xeloda (the low dose chemo pill two times a day).

So as you can see, I'm kind of a hot mess but so far I am keeping it together as best I can.
XOXO

Counting my blessings

I just had a moment 15 minutes ago where I was looking over at the baby monitor checking on Abby while she was napping and felt so very blessed. I am so blessed to have this wonderful family.  An amazing, supportive husband and two beautiful babies. My heart is so full. I think people hope for a life like this. I know I did for a very long time.  Despite having cancer I have been very blessed in this lifetime.  I am starting to understand more now about God giving you only what you can handle.  I wasn't able to understand it before because I was still so angry.  I feel that God wants me to be a beacon for SIDS and for breast cancer. If I am able to help others who have been affected by either of these traumas then I know I am doing honorable work. Then I know my life has a more wonderful purpose than the rewarding role of being a mother and wife.  Cancer you will not break me, cancer you will die and I will live. I will live a bigger, more passionate, more fulfilling life and you will be dead and gone.

 

BIrd's Eye View

I had to take a break from the blog for a while and may still do so for the time being.  I feel like I was complaining too much and am really on a negative streak. I don't like that bird's eye view of things.  I need to find my happy place. I need to get a fresh perspective.  I am starting to feel better physically but I need to feel better mentally, emotionally, and spiritually.  They are all so intertwined.  I feel I have always been such an upbeat and happy person but reading back over my past blogs I realize I have lost that perspective. I could always find humor in situations and try to make lemonade out of lemons. I started out with such vigor to heal myself and rid my body of this cancer.  It has sucked the majority of my life force. I need some time to get back to that happy place. I've been battling depression since the surgery and I want to get out of it without the use of even more drugs in my body.  I am going to focus on what makes me happy and do only that for a while.

Sharon was telling me that there was another young mom that was diagnosed with breast cancer recently and she is 6 months pregnant.  If I were to meet her or anyone who was recently diagnosed with breast cancer I would probably tell them to expect to be rocked to their core.  Expect to be challenged with such intensity that you forget where you came from, who you are and who you want to be.  That the fight to beat cancer can be so physically, mentally, emotionally, and spiritually draining that sometimes you feel like you can't go on even when you see the happy smiles of your amazing children, spouse, family and friends. You have to continue to generate your own will to survive.  YOU have to do it. No one can do it for you. You must be a cancer warrior and battle your toughest demons.  I feel I am doing this. NO, I KNOW I am doing that. I feel I will be a stronger and better person for having fought this disease but it's not over yet. It's almost over but sometimes the end still feels so far. I know I will get through this but I want to find a way to cross the finish line with my wits about me too.  That will be the ultimate goal.  Things are starting to get better, I must trust that they are.

Until later...all my love, Jess
 

Bleh

I don't like Mother's day. Holidays are for when you are well and have energy to spoil yourself and others. And with Holidays come expectations and I always (pessimistically) felt that if you have expectations you'll just be let down. I know how apathetic that sounds. It's like my birthday, the day is usually a let down. Anyway, I don't have a lot of energy to do things (for myself or others, I used to be so awesome in that department when I had my wits about me). Because of what is going on I do have a lot of guilt which I know I am not supposed to but I can't help it. It's a bad cycle. My poor mom and mother-in-law are over here taking care of the babies and I can't help. It really frustrates me. I wish I could honor them and let them know how much I appreciate them and everything they are doing. But what can I do? They look so tired.  Abby is precocious and Leo is a 21 pound sack of potatoes and everyone who is taking care of him is hurting their back.  I feel like when I say "thank you" the words fall flat and don't seem to be enough.  Thank you, thank you, thank you!!!  From the bottom of my heart I appreciate all that you do.  Mom's and Grandma's are the best.

The one thing I will say that made me happy today is that I used my good arm to hold the baby for about one minute and Abby for another minute later in the day.  I keep thinking how much I cannot wait to be able to hold them and squeeze them against my chest and give them proper hugs.  Hugs that only a mommy can give you.  My mom gives me those.  She always tells me "I can't get you anything" but what she gives me is so much better than any thing you could ever possibly buy. In fact it isn't anything you could buy. She loves me and she takes care of me like only she can.  She does her very best and for that I am so thankful.  I wouldn't be who I am without her. I couldn't be healing myself without her. Mom, I love you and all that you do. Thank you for being here 24/7 to take care of me. I am so happy to have the relationship with you that I do now.  I know we've had to work on that and we've had our ups and downs but you are the most beautiful person inside and out and I'm lucky to have you as my mom.  Next Mother's day we'll get back to our normal Mother's day breakfasts with you and Grandma and Lindsey (and now Abby) for the usual Hoff's Hut brunch.  Bleh...(about the food) but I'll be smiling with glee for sure that we are all together.  XOXOXOXOXO

Looking brighter

Finally, some good news.  Dr. Hayden said my skin looks to be healing.  It's still bruised in parts but she feels that underneath it is healing and happy and will eventually push out and replace the bruised part.  Oh yeah.  Happy dance!

Second, she says that I do not need to be worried about inflating the expander prior to radiation.  She wants my skin graft and incision scar to fully heal before we pump up it up.  Not to worry about timing she said if the radiation oncologist (I'm meeting my first at St. John's on Tuesday morning) wants me to start the radiation mapping process sooner (4 weeks post surgery rather than letting me wait until 6 weeks post surgery) that it will be okay.  Barbara says we did the hardest part already which was creating a "pocket" for the final implant under the chest wall muscle and using the flex HD.  Apparently we can go up two cup sizes even after radiation.  I was under the wrong impression.  Good news.

I feel so elated. I feel like I can breathe easier. I feel much more relaxed now.  Today I am taking the day off, no doctor appointments, no visitors, just chill time.  Tomorrow I have my echocardiogram at St. John's, fingers crossed that they figure out how to do it and not go anywhere near my incision scar!!

One small step ahead...???

I was a little freaked out that I couldn't finish the complete course of home antibiotics but Dr. McAndrew said my arm looks great and that I'm fine to stop them (even the two pill forms that I was taking in lieu of the more powerful IV form).  Hooray!  Small victory today.

In other news I had to get my "raging bitch" shot today.  That's the lupron shot.  It was a pain in the butt. Literally. You can use your imagination on that one.  Anyway, I will be getting the lupron shot monthly for 3-6 months and thereafter once every 3 months.  Let's add that to my to do list!

I'd like to thank JDR for taking me to my McAndrew appointment today on last minute notice.  She's the perfect doctor appointment companion because she's always thinking of questions I should be asking (good ones that don't occur to me myself) and she is a major multi-tasker.  Mostly JDR or as I like to call her, Jeanne Marie, asks me a ton of questions that I don't usually have good answers to that I end up asking McAndrew or some other medical professional).  Anyway, it occurred to me that I should be interviewing radiation oncologists since I need to start radiation fairly soon.  McAndrew wanted to make sure that if I go to Santa Monica for radiation that the location have the most up-to-date equipment (I want to go to Santa Monica for the obvious reason of not wanting to cross east of the 405 in traffic to Beverly Hills five days a week for six straight weeks...bleh).  McAndrew described it as making sure we have the best machines that can analyze and calculate the necessary geometry that will target the breast area but not go anywhere near my heart. I kind of need that to survive over the long haul.  JDR called around and got that taken care of for me in a jiffy.  St John's in Santa Monica has the same equipment as the Center for Radiation Therapy in Beverly Hills, FYI, as far as breast radiation is concerned.  I will meet my first radiation oncologist next Tuesday morning.

Apparently I missed doing an echocardiogram when I was first diagnosed. An ECHO is an ultrasound of your heart.  There was an order placed by McAndrew but apparently I was never actually told to get it done or it was never scheduled by her office.  Niiiiiiiice.  That being said, I have to get another, or rather, my first ECHO done prior to starting radiation.  Of course, I have no idea how they will take an ultrasound of my heart without firmly running and pressing a probe with sloppy gel all over my now recovering mastectomy incision and barely healed skin graft?  Son of a biscuit that does not make me happy at all. I am gritting my teeth right now with dread.

McAndrew also informed me that she wants me to take a pill form of chemotherapy while I am receiving radiation therapy.  She said it is proving to be more effective than radiation alone, however, it does intensify the side effects of radiation.  Lovely.  If I thought I was going to feel a little sunburned from the radiation, it will now be like I've been baking in the hot desert sun slathered in baby oil like all those idiots used to do in the 80's before we discovered a little thing called melanoma.  WTF.  The pill is called Xeloda and she said it was the pill form of 5-FU which was part of my original FEC-100 chemo treatment when I was pregnant.  That brings my final total to 1) Lupron shots + 2) 5-FU pills + 3) radiation.  Somehow the math doesn't compute.  I feel like there's something she isn't telling me. I really feel like she is throwing in everything but the kitchen sink. Why is that?  I don't like feeling like that.  And let's not forget that after radiation I will immediately start the tamoxifen which I will take for a total of five years.  I'm getting a little overwhelmed here.

Speaking of dread, well not really, more like dull anticipation and faint hope that it won't be the case...I go see Barbara Hayden tomorrow to see if she will have to remove that piece of skin graft and re-close my incision.  She explains that if that were to happen I can do it under "local" and have it done in her office.  She would just have to take "a small triangle" piece. That really does not make me happy.  It seems to be healing and she said it is a waiting game BUT she is leaving town Wednesday and I have to start radiation soon so we don't have time to waste.  If she doesn't like the way it looks I imagine I will have a procedure done tomorrow to fix it.  Ugh. Ugh. Ugh.

And another thing that is up in the air because of this "healing skin" issue is the fact that I still have to "pump up" the expander with saline to the appropriate bra cup size.  I have to be finished with the expansion process BEFORE I start radiation.  It has to do with the geometry of the radiation process.  Once they start I can't do anything more to the breast area.  So that's another thing "we", meaning my medical team, have to figure out.  McAndrew said that all these things will be discussed with her, Barbara Hayden, and the radiation oncologist to determine that proper balance of how long I can wait to heal and do the expansion process vs. how quickly I need to just move forward to the next step.

Sometimes it hits me just how scary all of this is and how I'm not really out of the woods yet nor am I at mile 25 of this stupid f-ing marathon.  Just had one of those moments typing about all the things that are still left to do. Every time I feel like I am closer to the end, I realize how I am just like a donkey with a carrot tied on a stick in front of them.  I am continually chasing the proverbial carrot. Hee haw. Hee haw.  I'm a dawwwnkeeeeey (that's said a la Kenneth from 30Rock style).

What hurts right now the most is my stupid left arm from the "axillary lymph node dissection" - aka removal of level 1 and 2 nodes in my arm pit. I mean what did they do exactly when they took my lymph nodes out?  What did I need my lymph nodes for anyway (my mom asked me that)? And will it ever stop feeling so numb?  Here's a little instructional video I found that helped me figure out the first question...this is mainly for you doctor wanna-be folks like Ashley.  If you aren't a doctor type do not, I repeat, DO NOT continue to Chapter Two after watching the first video on anatomy I am linking you to. Take my word on that. Alright?  Later on I'll explain why I need lymph nodes. We need a lesson on lymph nodes.  The answer to the final question is that I may not regain full sensation in that arm pit because the nodes are close to a major nerve that can get damaged in surgery.  The numbness could make shaving the arm pit dangerous or impossible.  Or alternatively, it could make laser hair removal a real breeze. No need for numbing spray!  For all you Billy Madison fans..."If you're going to stay home today, you can can help me shave my arm pits!"

Anyway because my arm hurts I haven't been great about doing my physical therapy exercises. I do some but not a lot because I don't want to hurt the healing of my incisions either.  I'll have to ask Dr. Hayden about that tomorrow. Jeeez, it's like walking a fucking tight rope.  I really, really would like to just fast forward to next summer please.

So things to do 1) explain the lymphatic system to myself and those that want to know and 2) write the "how-to" manual on chemotherapy and being bald.  My scalp is doing so nicely this second time around.  I knew what to expect and how to manage it.   A surgeon's scrub brush is key.

Sorry for the cynicism in tonight's post. I suppose I am just feeling a little jaded!!

Happy Birthday to me!

Great day today with my family. Leo was delicious today flirting with Momma. Abby was precious watching donald duck cartoons with Momma in bed. Lots of emails, texts and facebook messages that made my day. Thank you all for that.  It was a better day than I imagined.

Seeing Dr. McAndrew tomorrow and Dr. Hayden Tuesday.  I'm feeling pretty good. More and more movement in my arm and I'm able to do some of my physical therapy exercises. I've weaned myself off of the pain killers and am forging ahead!  All systems go!!