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.