Monday, January 31, 2011

Im-freaking-possible

Well...round 2 of second cycle of Chemo just finished.  I have so much to say but I didn't get a chance to type it out since Ms. Ashley Pittman was my Chemo partner today and she just wouldn't let me get a word in edgewise.  Chatty Kathy!!  I'm only kidding. She was helping me look for a headboard and mattress for the maid's room on the internet, research plastic surgeon's, and figure out how the heck to get an AIM account so we could ichat...so much to do and so little time. Plus Chemo is really quick now that I'm on this weekly dose.  It's 2pm and we got here a little late (15 minutes thanks to Ashley...ha ha ha, she's getting so mad that I am writing this) and there were no free chairs and had to wait so we didn't start until 11...so basically it only took 3 hours.  Times flies when you're having fun!

Will tell you more about my week from hell last week.  Sick kid. Got me sick. GI issues from Chemo. No naps or much rest for me...but overall I did fine after the first week of Chemo.  More to come.

XOXO

Thursday, January 27, 2011

No rest for the weary

Seriously. You cannot rest when you have a sick kid. Doesn't matter if you've had Chemo or surgery or anything else.  When your kid is sick they just want their momma.  That means I couldn't have a second to my darn self. Ugh.  So no nap.  Me with Chemo and no nap is a freaking disaster.  I was so out of it by the end of the day.  Poor David. The two hour gap where we don't have help meant he had to step in. I asked him if he had wanted to either a) change the baby's poopy diaper or b) feed him and put him to sleep.  He said he would get me a coconut water.  Oy.  So I changed Leo's diaper and then handed him and his bottle to David.  Then I just passed out.

Tuesday, January 25, 2011

Tuesday...

Woke up feeling fine. Still have energy.  Abby woke up with a heavy diaper and it had a funky odor.  Given her history of urinary tract infections I immediately put on a urine specimen catch so I can take it to the doctor later in the morning.  I like to nip that kind of thing in the bud.  I don't want her to get a full blown UTI or bladder infection. No way.
 
Acupuncture with Dr. Mao. He tells me not to be vegan during Chemo. He tells me to eat a lot of protein, veggies and healthy grains during Chemo.  Plenty of chicken, fish, eggs and even a little red meat. Whaaaat?!?!  Red meat?!?!  I immediately speed dial Vizhier who was going to bring me lunch. I ask her to meet me at Hillstone instead where we enjoy a veggie roll and split a burger.  Delicious!!  It was so nice to see her and catch up. Oh and we also split a hot fudge sundae but she didn't want me to write about that in my blog.

Still feeling fine later this afternoon too.  Gave Leo a bath. He was being so precious.
Some inklings of a headache but it comes and goes.

Tonight I rocked Abby to sleep but she wanted to go through the entire repertoire of songs. Over and over and wouldn't let me put her in her crib for quite some time.  But that's okay. I love being able to do that for her and it doesn't hurt to give her a little extra love.  It makes me feel better too.

Let's get it started!

Let's get it started in here!! Oh yeah. It's a party.  I'm at Tower already.  It's 9:10 AM. I've been stuck in my port and the line is ready to go.  One of my best friends Kristen is here, the tall gorgeous blond who is always put together. Hmmm, I don't look so put together this morning but who cares. I need easy access to my port and to be comfortable getting this infusion, right?  One day soon I'll be able to look stylish again (that makes me laugh since I wouldn't have ever have called myself stylish BEFORE regardless)... In the mean time I'll just have to ask Kristen to please wear sweats and no make up when she picks me up!! Ha ha ha!!

I have the lovely nurse Pia this morning and I have a prime chair by the window.  The chair selection at Tower is all about location, location, location.  You don't want to be on the North side because it has the not as fun nurses and all fluorescent lights.  The South side has natural light from large windows and has all the fun nurses I like including Ann and Pia.  The only downside today is that Angela, the head RN, isn't there today so I have a fill-in RN named Paige.  When I ask her about some supplements and vitamins she basically has to google it... "Here, let me google that for you"...

I was really not in the best mood when I woke up this morning.  I was just so angry and pissed off that I had to start treatment again. Having the break to recover, be with Abby and Leo and be able to pretend I didn't have cancer was a very nice thing. This weekend was a whirlwind. It was my last weekend breastfeeding so I was in mourning over that. We had a black tie event Saturday night (it was a fabulous 50th birthday party at the Montage Beverly Hills with celebs galore, hosted by Ryan Seacrest). Last thing I wanted to be doing 5 weeks after having a baby was be in a dress around hollywood stick figures but oh well! Thankfully I was able to borrow a dress (Lanvin) AND shoes (Givenchy) AND jewelry (her namesake line) from Miss Ashley Pittman. The part started at 6:30 and by 10 when we left we hadn't even had the dinner entree's...I hated to leave early but I was tired and I just wanted to be with my babies.  I got home from the party and nursed Leo for a straight hour.  I had to make the best of the weekend even if it meant I got a bit less sleep.  Sunday we tried to have a nice family day. We got out to enjoy the summer in winter weather and had lunch at the JC Beach Club. It's still in that iffy time of taking out a newborn and Leo did well in the car but started screaming when I put him in that moby wrap.  He does not seem to like that.  Partly because he wanted to nurse, could smell me and I just kept giving him the bottle instead.  Poor Guy.  He can seriously scream his head off in a scary way.  He wants what he wants and he wants it NOW.

Anyway, back to the Chemo...I was seriously nervous to start the new regime.  Pia explains to me all the  drugs I will be getting in my IV - 1) normal saline flush 2) Kytril (anti-nausea) 3) Dexamethasone Sodium Phosphate (a steroid for anti-nausea) 4) Zantac mixed with Benadryl (to protect the stomach) 5) Paclitaxel (Taxol, the Chemo agent given over 1-2 hours) 6) Carboplatin (Chemo agent, given over 45 minutes) then more hydration.  She explains that I will have to be continuously monitored since this is my first time with these new drugs.  They give the Taxol first and if I do well then they give the Carboplatin.  They will monitor me by taking my blood pressure, temperature, and constantly nagging me to see if I am itchy, have trouble breathing or any other odd reaction.  It all sounds so scary.

But I'm sitting here with Kristen and all seems to be going well.  We're watching a screener of Black Swan (thank you Karen!) and are enjoying ourselves.  There's a nurse here MaryLou who is hilarious and is yelling at me because I won't lower the footrest before I unplug my IV pump to go to the restroom.  She announces to the nurses station that I am causing trouble and that she won't work under these circumstances.  She's a riot.  She tells us she didn't like the movie Black Swam but tells us to enjoy it anyway...too funny.  SAG also sent me the King's Speech, Social Network and a few others but we're set on watching Black Swan.  I love Natalie Portman and so I wasn't disappointed and neither was Kristen.  Guess we were feeling like a dark movie.  Always makes you feel better about your own life when you see how bad other people have it (fictional or not).

The whole infusion went quickly and before we knew it I was done.  I was feeling fine.  I immediately felt better.  Emotionally and physically I felt better.  I was relieved of that anxiety.  Free to know that I had the infusion and did not have any reactions to it.  Now of course things can change in the next few days but for now I am feeling kind of normal, a bit drugged, but pretty energetic (mostly because I am so happy that I am done, it's over, I now know what to expect and it wasn't that bad)... Days 3 and 4 are supposed to be the hardest so we'll see how I do, and of course, Chemo is cumulative so I may feel fine now but as the weeks go on I may struggle with it more.

We blow out of Tower and I'm on my way home. I'll be home in time to pick Abby out of her crib from her nap.  I LOVE being able to do that.  She is always so happy to see me.  Her little face was thrilled to see me and I just rocked her in her chair for 10 minutes while she adjusts to being awake after her nap.  (She wakes up on the cranky side and usually wants to sit there and be held for a bit).  Then we go downstairs and hang out. I get to see Leo for a bit too although that is short lived since Abby requires my undivided attention and doesn't like sharing at the moment.  I give her a bath and put on her pajamas and I rock her to sleep. As I am rocking Abby to sleep I sing her any song that she requests.   Her favorite songs are "aranya" - the itsy-bitsy spider, including the extra-large spider and the teeny-weeny versions, "I'm a little teapot" - all three verses, our own family lullaby "Go to sleep little baby" and a few other favorites (that also includes another song we learned at Bee Planet class - "I'm hugging my Abby, I'm kissing my Abby, I'm rock, rock, rocking my Abby - it's time to say goodnight. It's time to say goodnight. Goodnight. Goodnight. Let's say goodnight. It's time to say goodnight. Goodnight Abby, Goodnight Abby, Goodnight Abby, it's time to say goodnight." Then I sing that song with everyone's names. She's even tell me who she wants me to include.  Anyway, tonight for some reason she only wants one song - aranya- and then she told me no more.  So I try the go to sleep lullaby and she says "nooooooo...." so then I start to hymn it.  Then she tells me, "No hmm, hmm, hmm" -  so funny. This little girl just lights my heart up.  Even when she's being a little brat. After I put Abby down I am able to spend one on one time with Leo.

It was a good day and I am thankful.  I'm just so happy to have energy, to be able to hold Abby and hold Leo, and know that I did fine today.  I'm keeping my fingers crossed for the remaining treatments!

Tuesday, January 18, 2011

I'm in a glass case...of emotion

Thank you Ron Burgundy.  That pretty much sums it up for me most of the time lately. Dealing with cancer can be incredibly isolating. 

I thought about Kris Carr, the woman who is behind the "Crazy Sexy Cancer" documentary and line of books and I surmised that she didn't have as much to deal with as I do...a toddler, a newborn and cancer so she could do her alternative research, her yoga, her detox retreats, her work, etc. but still I wouldn't trade places with her in a million trillion years. First of all because I love my babies. That trumps all.  Second, because she couldn't and can't get treatment for her cancer.  All she can do is LIVE with cancer.  I can treat mine, as grueling as it is, and live to be cancer free.  That's what I need to be thankful for.  Lemonade out of lemons people.

Life is fucking hard right now but I'm keeping "it" together as much as I can!

Monday, January 17, 2011

Longest. Day. Ever. (of 2011)

Friday was a very, very long day.  The day flowed nicely in terms of scheduling. I was able to get to St. John's and get the injection, walk over the Tower Imaging for the Brain MRI from the Hospital, get the Brain MRI then walk over to Veggie Grill for lunch with the hubby for the "all hail kale" salad with Tempeh and a vegan chocolate chip cookie (while David had Poquito Mas from next door), then walk back the Hospital for my Bone Scan.  That machine was very quiet but they harness you so you lie perfectly still then position the camera a 1/4 above your face.  That was a bit claustrophobic, even for me and my meditating mind...Finished the bone scan then raced over to see Dr. McAndrew in Beverly Hills at Tower Oncology (no small feat on a Friday afternoon from Santa Monica!)...

After waiting about an hour (I only say that because I was already exhausted at that point) I was able to see Dr. McAndrew.  Since I hadn't planned to see her I didn't have time to prepare my full list of questions so I had to come up with a quick list from memory...

  1. Scan results?  
  2. Lumpectomy vs. mastectomy 
  3. Reduction or reconstruction 
  4. Hysterectomy or Oophorectomy
  5. Giuliano vs. Funk 
  6. Do I qualify for any trials now? 
  7. Next round of chemotherapy - weekly or every three weeks?
  8. Worth a visit to go see Dr. Block?

When she came in she told me that both the MRI Brain and the PET/CT scans were normal.  This was great news of course.  Still waiting for bone scan results but I'm feeling confident.

After talking to McAndrews I am very overwhelmed by information.  I don't even feel like I can enjoy the good news about my scans.  I probably can retain about 25% of what she told me.  I really admire McAndrew.  She knows her stuff.  I am really in the best care.  She's amazing.

Long and short of it...I'm starting Chemo again next week (was supposed to start this Thursday but I freaked out...I need some breathing room, I mean I was *just* poked and prodded and scanned for two days straight on Thursday and Friday).  I will be doing the WEEKLY taxol and carboplatin treatments.  It's lower dose so hopefully it won't be as harsh as I'm anticipating...

Both McAndrew and Giuliano separately said they are fine with lumpectomy and radiation; given no family history, my age, response to treatment, etc. they feel I do not need to rush and do double mastectomy and reconstruction. There is also no need to rush for hysterectomy or oopherectomy at this point.  She said I could do it later if I really wanted to... I hope I don't eat my words later on.

No need to go to Evanston, IL to see Dr. Block.  She said there are plenty of capable people here like Dr. Mao or Mary Hardy at UCLA who can provide the integrative oncology and the mix of East and West.  And for supplements and diet she recommended going to a nutritionist here and gave me a referral for Rachel Beller.  I may still do the phone consultation with Dr. Block which seems much easier and I do really like his book.  It makes a lot of sense to me...

This week is all about getting my house in order.  Training Ava. Coordinating the staff. Making sure everyone is ready for next week.  Oops, gotta go...more later!!

Friday, January 14, 2011

Good news

Sitting here waiting for the bone scan...killing time...  


Got to St. John's this morning for the Bone Scan and Brain MRI at 9:30.  Got the injection of MDP, (technetium Tc99m medronate) which they bring to you in a lead box clearly marked with the Nuclear warning sign...  It has its own special lead vial too. It was pretty scary looking but I think with things like this it is best not to think about it too much.  Thinking about nuclear medicine, radiopharmaceuticals, gamma rays, radiation, radioactive isotopes, blah blah blah, can make you crazy.  I haven't studied the periodic table of elements since high school and I don't remember that much but some of the "stuff" I've been injected with occurs really deep down on the table and doesn't occur in nature.  They are all synthetically produced. Gadolinium was the second one I got during the Brain MRI.  Two in a day. Whammo!  No wonder I can't hold the children.  Holy crap.  

Brain MRI was a lot of fun.  Fun if you like sitting completely still in a helmet inside a dark cold cave while putting your head next to the bass speaker at a techno rave.  Boom. Boom. Boom.  Thankfully, I can close my eyes and practice my breathing and mediation.  With total recall and pitch I can hear inside my mind Dr. Mao saying "breathe in.......breathe out... while saying the word "calm" in your mind...." Made the time go by very quickly.

While waiting for the Brain MRI Angela from Dr. McAndrew's office called me and asked if I could come in a see the doctor at 3:40 today...I had to stop her and say, "was everything OK with the scans?" (Otherwise why would she want to see me immediately?!?!)  She said the scans were good.  THE SCANS WERE GOOD!  Did you hear me?  The scans were good.  She said that I was originally scheduled to see Dr. McAndrew on January 31st but she wanted to see me sooner to finalize my treatment plan so she was able to squeeze me in today...Whew.  Still will need to get the results from today's scans but that news certainly made me feel much better.  I can breathe a little bit easier now.
While I was sitting in the MRI machine today and yesterday I try to wrap my mind around who would invented this type of medicine and machines.  I hope they are retired on their own island somewhere in paradise.  I know, I know....I'm sure it was a team of engineers, physicists and medical professionals worked for a period of years and years to do something major like that but I really can't warp my mind around it.  Amazing. Just amazing.  I wish I could be smart enough to do something like that.

Last night at Sue's we watched the Crazy, Sexy Cancer documentary.  The producer and subject of the documentary, Kris Carr, was 31 when diagnosed with a rare form of vascular cancer.  She had 24 tumors.  She is a huge supporter of the vegan lifestyle and has been all over TV, magazines, and the internet speaking on healthy living.  The documentary was very good but I was waiting throughout the whole documentary for her to say that her lifestyle changed her prognosis and she was in remission.  From what I can tell that isn't the case.  Her message is that you can LIVE with cancer.  I was a little let down by the film since I thought she was going to say she got diagnosed with cancer and through her newfound vegan lifestyle was able to save herself.  Not so.  Bummer dude.  I want someone to tell me that the cancer-free diets worked for them.  Yes, she feels healthy and her cancer is manageable and hasn't changed much but she is still living with 24 tumors.  That isn't a happy ending in my opinion.

OK, going in soon.  More later once I meet with Dr. McAndrew and find out the plan!!!

Some photos that make me happy!













Thursday, January 13, 2011

No big deal

Time to get positive people. It's a beautiful 70 degrees outside. The sun is shining. I am feeling fine. I'm making peace. I'm moving forward. I'm taking things as they come. I'm making things happen. I'm focusing on the positive. I'm also trying to see the glass as half full not half empty. I want to stop complaining about how things were and how I don't want things to change. Life isn't fair. Life brings challenges. I think what makes you a great person is how you handle those challenges. I want to handle them gracefully. I want to let things roll off my shoulders with ease. I want to stay focused on the things that are truly important in my life. (Thank you Lorraine for reminding me of that!).

As such, I have started clearing out the clutter in my relationships, my home, and last, but most important, my mind. My mind is the biggest hurdle for me. I keep thinking that if I work on the first two the last will be easier. I feel the more I focus on what is important - my health, the family that David and I have created with our two bambinos, my larger family and close friends - I will have a better life. I like the way Lorraine put it - my "changed for the better" life!!

I'm not stressed about life as much as it may have sound in the previous posts, I'm making peace with the fact that my life has changed and my future will be different. It's been hard to "let go". I am going to focus on my important relationships and learn how to give up control (easier said than done, of course!!). It's been most difficult to give up control of things that are majorly important to me. Like spending all my time with Abby and Leo, studying and learning how best to raise them...now I've got to let other people do it with me so I can go see this doctor, go get that test or go have that treatment. My critical relationships are being temporarily disrupted so I can heal. I know I need to heal emotionally, spiritually, mentally and physically. The challenge for me then is not to focus too much on the immediate present. Not to making myself feel like I need to go to classes everyday with Abby or nurse Leo once every three hours but to simplify it to spending quality time with her no matter where we are and to not put pressure on myself if I need to give Leo a bottle. I don't think there's anything more important than your kids so I'll be focusing on those relationships. So when I'm feeling well that is where you'll find me. Hanging with the Abster and Leo the Lion.

Of course then there's the other most important relationship, my marriage. The fact is that for most people while raising two young kids your marriage gets pushed to the side. Then top that with cancer. David and I are so busy coping and surviving that we have no time to focus on each other and our own relationship. He's been pretty amazing about our situation and for that I am beyond grateful. He has been an incredible rock for me. When we got married, our Rabbi told us that the temptation of married couples is to come home at the end of the day and give your partner your worst. To take out on them the day's frustrations because we feel safe. He made us promise that instead we would always give our partner our best. Sometimes that is really difficult to do. But really, when you stop to think about it, what's the point of giving strangers your best? When will you ever see them again? Doesn't your partner deserve more than a stranger or an acquaintance? Monday when I was feeling crummy it was David that cared enough to fish out my melancholy even though I was giving him the silent treatment. How horrible am I? What did he do to deserve that? Nothing. He deserves nothing but my absolute best. I shouldn't take him for granted. I have to remind myself of that daily.

So let's talk about fun stuff. Stuff like how easily Leo nurses and how he just wants to snuggle with me all the time. If I've been with Abby for a while and he's been with the nanny and I walk in the room so he hears my voice, he wails. He wants his momma. That makes me feel like a million, billion, gagillion dollars. It happens without fail that he hears me or senses my presence that he just wants to snuggle with momma (my favorite Home Alone 2 line again - "I knew it was you, I could smell ya, gettin' off the elevator"). I love it!! It's so nice to be loved and wanted. He needs me. Maybe that is why selfishly I am trying to breastfeed as much as possible. There's nothing that compares with the feeling you get when your child is snuggled up to you skin to skin and nursing like that. Love it. Love it. Love it.

Secondly, let me tell you about Abby and shoes. S H O E S. Abby is obsessed with shoes and walks around her room and the house interchanging her shoes, often walking around with mismatch shoes (one rain galosh and one sneaker; one dress shoe and one croc; one slipper and one flip flop). Plus she likes to get into her bureau and her closet to put on random hats and barrettes, or headbands or jackets all of course with a ton of necklaces cascading down her neck like Mr. T. She is a character!! And she is beyond obsessed with Mommy right now. If I have the baby it is "no, leo, no leo" and "baby's room" or "right there" - then she shows me where I can put him down so I can play with her instead. Sometimes it is endearing and funny. Sometimes not so much. But we're making it work.

Now on to medical stuff...I met Dr. Armando Giuliano, the breast cancer surgeon yesterday (he is the Chief of Science and Medicine Director for the John Wayne Cancer Institute Breast Center). It took over 3 and a half hours, most of that waiting to see him...but I really liked him. He made me feel very relaxed and at ease which, even though I love her, isn't how I feel with Dr. Funk. They have completely different energy. Most would agree that they are the two best breast surgeons in Los Angeles. Both have incredible reputations and experience. Whenever I go see Dr. Funk though (and I've waited over 2 hours to see her before too so in that regard they are the same) I always feel rushed. Her energy is a little more frenetic. Dr. Giuliano's energy is more wise professor like Albus Dumbledore. I am still reserving judgement on what I will do but it gives me something to think about. He gave me a ton of information and wasn't wishy washy on any of it. My concern with Dr. Funk is 1) she reserved the right to tell me that she saw more than 4 infected lymph nodes the first time she examined me ( but told me after my 3rd round of Chemo) and 2) first she told me that the lumpectomy and the reduction could be done at the same time (which she said would be great since I could save on the cost of the anesthesiologist) and then she told me at my last visit that she would do the surgeries separate. By the time the information sinks in and I realize that the information is different than before the visit is over and I have to wait to ask her about it the next time. Surgery is 4 months out but I'm leaning toward Giuliano now....

I'm currently squatting it at my mother in law Sue's house after my PET/CT scan. David and I went to Nate N Al's for a late breakfast/early lunch (same difference) after the scan and I let myself have my egg white with veggies and a potato pancake with apple sauce. Yum. I pumped for the first time since the hospital. I got 2.5 ounces out of the left breast (the one with cancer) and 1 ounce out of the right breast (the one without cancer). Try to make sense of that. I'm trying to wrap my mind around that. It's just so bizarre. With the twins I remember one side having more than the other but I don't remember my left being the strongest producer. It's just very odd. Will ask Dr. McAndrew her thoughts on that...

I wasn't really worried about the scan today... I'm just upset I have to leave my kids and then be away from them so long while I'm radioactive. :( We got to Tower at 8:30; saw Jose who was going to start my IV then decided to use my port instead. That's one huge benefit of doing the scan at Tower, all the nurses are well trained at using the ports. I'm generally over the whole medical part of things since I'm use to being prodded and poked. I just know it has to be done so let's do it. Bring it on!!! But using the port since I went through so much drama to have it is worth while. Anyway, got the port flushed, and ready to go, saw Sandy and got an injection of Fludeoxyglucose F 18 (being specific with the drug names here for future reference) then sat in a big arm chair covered in blankets (she says so that the brown fat in my body doesn't respond to being cold and skew the scan). Then while I sat there for an hour I had to drink a "mocha" drink of barium sulfate. Now if I NEVER have to drink that solution again I will be thankful. Ugh. Thankfully I don't have a sensitive gag reflex! After drinking two bottles of that drink I went in for the scan. It looks like a big tube and a slide, similar to a needle head and thread. The slide whisks you in and out through the tube while you lay perfectly still with your arms up over your head. The whole test took about 25 minutes. Keeping your eyes closed is key. The only thing they should have warned me about what the commanding computerized voice shouting "Breathe In... Breathe Out... Stop Breathing"...then "Breathe Normal". It was so shocking I wanted to laugh. Then I got an injection of Isovue (an Iodine agent) and I felt really warm all over. Like how a kiss from that special someone can make you feel. Ah ha ha ha ha.

Tomorrow MRI Brain and Bone Scan at St. John's... I'll go home late tonight after Abby is asleep and sleep at home then I can wake up and be with Abby and Leo!! Then 9:30 we check in for the tests. Tomorrow night we are checked into a hotel since I can't be around Abby or Leo for 24 hours after the bone scan. That worries me a little...that must be a more gnarly test. I'm not going to think about it though. It'll be fine I'm sure. Not worse than a c-section, right? Anyway, we are supposed to get the results from today's scan within 24 hours so I hope to hear from Angela and Dr. McAndrew tomorrow.

Fingers and toes crossed!!

Tuesday, January 11, 2011

Getting mad

I'm getting very annoyed and angry.  There's been so much crap lately that I just couldn't pinpoint what was making me feel this way.  Is it depression? Is it fear? Is it anger? Is it disappointment?


(**By the way, my night nurse Brandi told me that I don't qualify for post-partum depression since I have extenuating circumstances and since I don't exhibit any symptoms against the baby).   


I realize that I just want to be normal. I want everything back to normal.  I want to be a new mom adjusting to the challenge of dealing with a toddler and a newborn.  I want to nurse my baby boy. I want to take Abby to her classes.  I want to go to the grocery store and pick up something for dinner. I want to run out of the house without having to worry about putting a wig or hat. I want to look in the mirror and see that I have eyelashes and eyebrows.  I want to discuss something other than my health with my husband who I can tell is worried sick about me.  I want the stress of worrying to go away.  Worrying about my diet, worrying about my vitamins, worrying about herbs and supplements, worrying about my doctor appointments, worrying about my upcoming scans, worrying about whether or not I should be seeking other opinions on my treatment, etc. etc. The stupid list goes on and on.  I don't want to have fucking cancer.  I hate you cancer.  I really hate your fucking guts. 


Our wonderful night nurse Brandi was telling me about her cousin's wife who just passed away from cancer with two young children...she wasn't telling me to scare me since the wife's situation was much different and she had chose not to undergo treatment.  She was in denial. She didn't want to deal with the reality of having cancer.  She wanted it to go away.  Instead it consumed her and took her life.  I am not going to let that happen but I can certainly identify with the fact that I also don't want deal with having cancer.  It would be so much nicer if it just went away, thank you very much.  I know what I do have to take care of myself but it doesn't stop me from feeling like I want to crawl in a hole and be ignorant.  Ignorance is bliss my friends.  


I was thinking that the average person probably has a certain number of thoughts in their head at any given time.  Let's think of the person who makes your burger at McDonald's (not that I can have a burger or go to McDonald's but work with me here).  They are probably thinking about 4-5 different things at a time.  "Can I take your order? Gee, this guy has a funny nose. Can't wait to get out of here. Anything to drink?" You get the idea.  I feel like even though I am usually a high functioning individual with a type A personality that I am juggling 1,747,818 thoughts in my head at any given time throughout the day.  Cancer just piled on even more responsibility than I already had. "Nurse Baby. Dress Abby. Read Life Over Cancer. Wish I could do yoga. Train new nanny. Call our contractor. Why is there a fork in the dog bowl? Sign Abby up for her classes. Grocery store list. Menu plan for the week. Wish I could write thank you notes. Coordinate breast milk donations. Wish I could get a massage, etc. etc."  It's basically a to-do and wish list all day long in my head times 300.  


Several people have asked me if I should be getting second opinions on my treatment.  People have friends at this hospital or that center or know cutting edge doctors in New York, Texas, etc.  Plus the newest research shows that the most effective treatment methods are those based on tumor markers...this is where most of the breast cancer clinical trials are focused.  I know my friends have the best intentions but believe me when I tell you that this Type A obsessive high-functioning individual is doing all she can to get the best treatment and ensure the best results. I asked Dr. McAndrew about the trials long ago and she told me that if my situation was different she would have put me in the trials immediately. However, the situation is that I wasn't eligible because I was pregnant.  I am doing everything in my power to make sure that I am going to be around for a very long time.


I do know that I AM feeling all of these things - FEAR, I'm scared for my upcoming scans even though I tell myself that I am not (I do, deep down, have an apathetic feeling about them though); DISAPPOINTMENT, I'm disappointed that these are the last few days that I will get to breastfeed my son; ANGER, I'm angry that I have so much on my plate and can barely manage to deal with everything on a day to day basis (we all know that I already admitted to myself that I am not superwoman even though I try my hardest to be); DEPRESSION, I'm depressed that I can't just wave a magic wand and have things back to normal; GRIEF, I'm grieving a life I had which seemed much more simple even though it was still complex, a life where I could be more relaxed about what I are, what I drank, and what I did.  Nothing is going to be the same but that's life, isn't it?


I'm also trying to clear out my demons and make peace with people and things in the past. That also means moving away from unhealthy relationships that I felt dutiful to maintain. Instead, I want to make room for a happy future by clearing out any negative things that I may be holding onto from the past. When I studied at the Beverly Hills Playhouse I read (required reading) Milton Katselas' book called "Dreams Into Action" - he discusses getting rid of obstacles (including people) to achieve what you want in life.  Otherwise "you may only achieve your dreams in your dreams"...  I have to remind myself of that.  Cancer isn't something I can overcome with sheer will power but I think clearing my mind and my life of "clutter" (like the cleansing of the house and applying feng shui) will truly help heal my body.  I am giving myself permission to sever ties and dismiss people and things that aren't supportive. I want positive people. positive energy. positive future. 


I watched the Oprah episode where she interviewed J.K. Rowling. In that episode Jo Rowling discussed being estranged from her father.  Here is the dialogue - Oprah asks "Do you think you'll ever make peace?" Jo says "No, I don't. I don't. I think that it's such a huge thing to be estranged from a parent but obviously there would have to be very big reasons for that" "Do you have your reasons?"  "I have my reasons." "Any you want to share?" "It wasn't a good relationship from my point of view for a very long time but I had a need to please and I kept that going for a very long time and then there just came a point at which I had to pull up and say, I can't do this anymore."  How liberating.  How poignant. I understand having the disease where you need to please.  That need to be dutiful. To send your father father's day cards and holiday cards even though that person doesn't return that same courtesy.  It wasn't until my sister did it herself that I myself felt able to stop being dutiful and cut myself off from an unhealthy relationship.  For me the fact that I never heard from my father even though I got diagnosed with cancer was the "very big reason" for me.  Of course there is a much longer history there but for a family member not to acknowledge a concern like cancer is pretty darn lame (for lack of a better word).


You really do find out who cares about you when the shit hits the fan.  You find people whom you never thought in a million years would be there for you are suddenly your strongest supporters.  It's pretty amazing.  So for those of you who are there for me I salute you and I thank you!!    



Hitting the Emotional Wall

Saturday was are really rough day.  I really hate hormones.  That's what I'm blaming it on. Although I did have to look up post-partum depression.  I mean, really. I'm like the classic case - anxiety, irritation, tearfulness, restlessness; but I'm sure they don't qualify it with people who are also dealing with a new baby, a clingy toddler and breast cancer.  Of course I'm going to feel that way.  Who else is dealing with everything I have on my plate?!?!?!  


It's so weird for me to go back and read my last post. I was feeling so upbeat.  Saturday, not so. Not so at all.  And today not so much either for different reasons. I am really having a low period right now. I'm dealing with incredible disappointment. I am sick and tired of being disappointed by people and events.  It seems like the disappointments just keep growing.


Last week my housekeeper tells me that a friend of mine that I introduced her to for work one day a week had tried to poach her from us a couple of months ago. She tells me my friend and her husband offered her to live-in, make more money, get her a car with insurance, etc. etc. and were really putting the full court press on her apparently.  She even said the whole family was really encouraging her to take it but even though she felt a lot of pressure she said no. Yikes. Compared to the two days a week she works for us plus the other families she works for during the week it sounds like a much better opportunity...but the more I thought about it the more pissed I got. Then it started to get me depressed. 

Anyway, the only reason it came out now was because I was looking for weekend help (since Roxana quit).  Our housekeeper works for us Mondays and Fridays so I asked if she could switch some days (either ours or some others) so that she could work for us on weekends; she takes the bus all the way downtown so I figured it would work out great, since she could just stay here and not worry about traveling back and forth each day. At first she was excited and said no problem but then she told me that she now also works for the friend Saturdays too for a "few hours". She asks me to talk to my friend about it.  It turned into this whole process of trying to get everyone on board. As if I don't have enough to coordinate. So the friend tells me that she wants to be helpful BUT they really need someone 2x per week... they will TRY to make it work with one BUT if it doesn't it even thought it would make them very sad they would have to get a new cleaning woman. That's not a resounding, "whatever you need!" or "we'll figure something out" Instead, it was a muddled maybe riddled with guilt. At the end of the day, the friend basically told me it's the housekeeper's decision not hers to make. Really?  If the situation were reversed I would have encouraged my housekeeper to take Saturdays off and go work for my friend who was sick.  But that's just me.

And then it really started to bother me...she tried to hire our housekeeper away from us. I mean, cancer or not when would it have ever have been OK to do that?  Especially when we introduced her to you in the first place?  I realized then and there that she doesn't care about me. She's not a friend. That couldn't have been made any more clear than when she tried to hire her away. When I commented to the friend that I knew about her trying to poach the housekeeper she told me she "would have discussed it with me first".  Ummmm, Nooooo.  No she didn't.  She made the offer first. She put the full court press on her to accept first. And what if she would have said yes?  There wouldn't have been a discussion. She would have just TOLD me that our housekeeper "made a decision" to come work for her full time.  Right?

All that being said our housekeeper decided she doesn't want anyone to be unhappy so she wants to keep working for everyone just like she was before. So yeah, I was disappointed by that.  Disappointed in our housekeeper for not stepping up to help us on weekends. Disappointed in the "friend" for not stepping up now and for her previous attempt to steal our housekeeper.

Saturday, January 8, 2011

Scans

My scans have now been moved to Thursday and Friday of next week.  Thursday is PET/CT and Friday is Brain MRI and the Bone Scan. I get a few more days to nurse Leo. I was giving him a bottle today and I know that everyone keeps telling me that I can bond with him just the same that way (which in some ways is true) but it doesn't feel the same to me at all.  I love how much they snuggle into you when you are nursing.  Well.......a few more days and I won't have to worry about that anymore. I am thankful to be able to do it at all, right?!?!  Plus Thursday and Friday nights I can't even be here since I'll be radioactive.  Nice.  Christel asked me if I'll be glow in the dark.  Anything is possible!! At the end of next week it is time to get down to business.  Seriously.  I am not taking this lightly.

I am going to pump myself up to stay strong. stay positive. be a fighter. look towards the future.

Immediate goals:

Spend as much time and energy with the babies (number one priority)!!! (By the way, Abby is occupying all my time lately and she is loving it. We have been going to her morning classes and since I'm not pregnant (and not doing any treatment right now) I have much more energy to focus on her.  Otherwise all I here is "no Leo, no Leo, no Leo"...so since Leo doesn't know the difference, except for those times when I have to check out to sit there and nurse him (benefits are two fold to that), Abby gets to have her mommy. Seems to be working just great for her. She is being such a love bug too.)

Go Vegan (or pesca-chicka-tarian, still doing the research on that one).

Yoga, Pilates and Walking!  At the end of the month I get the "all clear" to start yoga and pilates again.  Woo hoo!  (Oh and speaking of walking I want to do the Susan G. Komen 3day walk in either San Francisco or San Diego towards the end of the year.  Any takers?)

Thursday, January 6, 2011

Official Updates

I finally spoke to Dr. McAndrew Tuesday night about my scans.  I wanted to make sure that the breastfeeding wouldn't negatively impact the results of the scans and find out when my scans were scheduled.  She wasn't concerned about the breastfeeding making the scans hard to read; she said the the tissue would "light up" but that since they were using the contrast dye regardless all the important organs they need to check wouldn't be affected.  I told her that we had discussed having my scans the second or third week of January and that her scheduler Carla had said I wasn't scheduled to meet with her until the 31st of January, which sounds very late.  She reminded me that the second week of January is NEXT week.  Yikes. That gave me an instant reality check.  Next week!  That means I actually have to undergo those stupid-ass fucking scary scans in short order.  So Carla is suppose to call me with the schedule... I'll wait until I see Dr. McAndrew in person to ask her all my other questions (once a week chemotherapy or once every three weeks, hysterectomy, lumpectomy and radiation vs. prophylactic double mastectomy, tamoxifen, menopause, etc, etc).


Yesterday I went to see Dr. Daly for my two week post-surgery check up.  I weighed in at...yeah right. I'm not going to tell you. Let's just say I've lost less than 20 lbs since giving birth not that I'm really paying that much attention to something like that.  The clothing situation post pregnancy and while nursing is really abysmal. It's annoying to get dressed in the morning to take Abby to her classes.  I know I can't expect to go back into my old clothes immediately but shit, I'm really annoyed by the fact that I have to play a game of memory in my closet each time I get dressed. Did that fit? Did that make my c-section scar uncomfortable?  Oh crap, who put this shirt back in here? I swore I put it in a pile for the goodwill. Oh hey, there's that missing sock. Should I wear the stupid Brooke Burke belly wrap? Ugh. Ugh. Ugh. Then after the humiliation of getting dressed I have to go put on the wig. Anyway, you can bet that after those two major steps I'm not putting on any make up or jewelry.  Screw it!! 


Dr. Daly says I'm looking good and my hemoglobin was 13.8, which is apparently very good.  She wanted to do an exam of my breasts post pregnancy.  She agrees with me that you can barely feel the tumor. She said "well, you have such large breasts that are lumpy and so even if I felt it before it would have just felt like the other lumpy tissue and given that you are so young it wouldn't have raised any red flags"...basically the pregnancy was a blessing to help us discover the tumor.  I asked Dr. Daly her opinion on getting a hysterectomy and she said "a hysterectomy or an oophorectomy?"  I said "a what now?"  She said that in women with my situation they usually do an oophorectomy to remove the ovaries as well.  I didn't know about that.  Anyway, that made me really sad.  At the end of the day to be thinking about major surgery like this before I turn 35. WTF?!?!?!?  She said I definitely need to talk to Dr. McAndrew about it and the same for the breast surgery issues as well...


Last night on the home phone I got the message from Karla from Dr. McAndrew's office... F U C K.  Violent shift into reality. Bone scan this Tuesday January 11th, check in at 9:10AM, cedars sinai imaging center, 9:40AM injection, leave then return at 1230PM for scan, out by 130PM, need to pump and discard for 48 hours, oh and since I'm radioactive I can't be around the kids for 24 hours!!  I have to check into a hotel or something for the evening.  

Next, a PET/CT next Thursday, January 13th - done at Tower Oncology's offices 830AM, can't be around baby for 8 hours after scan. need to pump and discard milk for 24 hours.  Prep for scan - no exercising/massage for two days prior, no carbs, sugar, coffee, tea - only protein and water for 24 hours prior to exam, on day of exam water only for 6 hours prior.



Brain scan is also going to be scheduled but not sure when...


Most difficult for me has been the attempt to go vegan.  I don't know where to start. I don't know how to feel satisfied without the meat.  The dairy isn't an issue (oh wait, does that include goat cheese now too even though Dr.'s Mao and Kumiko agreed that I could eat?).  It's the eggs and fish.  Red meat and pork I've given up already.  But I heart veggie frittatas so much.  How do I give up my morning eggs?  Oatmeal and cereal only in the mornings?  It's fine....I've been fine having this in the mornings but I am really craving a frittata full of veggies like mushrooms, asparagus, spinach, peppers and tomatoes. Waaah. So that's the egg issue.  The other issue is sushi.  You just can't make me give that up. Not go to sugarfish anymore?  That's sacrilegious (FYI - Sacrilege is the violation or injurious treatment of a sacred object)!!!  Perhaps I am going to be a eggs-a-pesca-tarian.  Crap.  More research needs to be done.

Still need to buy more vegan cookbooks, watch "Crazy, Sexy, Cancer" and read her blog and video blogs, Jeanne turned me on to the most delicious food from Veggie Grill today...exciting!, so need to research a few more vegan and vegetarian restaurants, do my Dr. Block survey and GET my consult STAT, finish reading through Life Over Cancer and the China Study.  TOO MUCH TO DO!!


Buck up Sister!!

Tuesday, January 4, 2011

Background of Leo...

I wanted to give the background of Leo's name.  It is just "Leo" not short for Leonardo or anything else.  Leo is both our grandfather's names. My grandpa Leo is actually Lionel Henry, David's grandfather is just Leo and no middle name... I have very fond memories with my grandpa Leo growing up, he is the most gentle, caring and loving person, he always made me feel very special and was always proud of me and my accomplishments, no matter how small.  He has always been a huge support for me.  Growing up one of my favorite things was spending Sundays with my Grandpa Leo. We would go to his favorite diner for breakfast where he had his usual cup of coffee and I had the two two two breakfast special; then we'd head to the mall for browsing and shopping. We always finished our mall jaunt with a trip to the candy store for jelly belly jelly beans.  I'd get my favorite flavors (pear, cherry, and sour apple) and a couple of what I knew were his favorite (my memory isn't so great now but I know one of them was coconut).  He pretended he didn't like to eat the jelly beans but would always have some (which is why I learned which were his favorites and even though they weren't necessarily my own I would always put some in my bag anyway!). It was nice to share them on the ride home from the mall. We would talk about random things. It was a really important time for me since at home things were a little chaotic but I could always count on Grandpa Leo always making that special time for me.  So when it came to finding a name for our son I wanted something to honor an important person to me (I don't think David actually knows or understands my motivation for pushing the name, I've never vocalized quite like I am doing just now).  For me, Leo is a name that only has positive associations. I've never met a Leo I didn't like and that includes Leo DiCaprio. The name just really makes me happy. Leo! Leo! Leo! And while I was pregnant with my little miracle I wanted to find a name that made me happy, something that we both agreed on and something that honored the little warrior growing inside me.  Leo the Lion!

Leo is my little miracle on so many levels. He truly was an unexpected blessing. He was meant to be. It was natural conception after so many difficulties in the past. And now that I am breastfeeding again and my breasts have changed to accommodate the lactation the composition of the tissue has changed. I honestly feel that I wouldn't have caught this tumor if I wasn't pregnant with Leo.  It was the change in tissue composition from the hormones and growth that made the lump stick out. Otherwise why didn't I notice a few months prior before I was pregnant while still breastfeeding Abby?  Particularly since my tumor was almost 5.5 centimeters.  How could I not have felt that before?  AND furthermore if I hadn't been pregnant yet did somehow happen to find the tumor and undergo treatment I most likely wouldn't have been able to carry another child.  Apparently Chemo can cause major damage to your reproductive system and eggs.  Not to mention that I need to be on estrogen reducing drugs that really make pregnancy impossible.  It's all very interesting and hopeful to me.  


All that being said, I was having a hard time in the beginning calling him Leo.  David and I talked about this. We both were having the same problem.  We would say can you do this or that for Abby and...(we'd have to pause and think on it then say) Leo.  For us it is so easy for Ben's name to follow in that sentence.  Ben and Abby. Abby and Ben.  But now it is Abby and Leo. Leo and Abby.  The more I say it the easier it gets to remember.  And it isn't as if Leo looks like Ben.  Sure there is the resemblance and the fact that they are both newborn boys but Leo definitely has his own look.  He's already wearing Ben's old clothes that he wore after he was over a month old.  Leo is just bigger from the get go.  In fact he's already outgrown many of the clothes that he inherited from Ben.

One thing about having a second child is that you forget how tiny newborns are and you forget how long it takes from them to do everything.  It took forever and a day for Leo to keep his eyes open.  I don't remember that with the twins.  He is already lifting his head like a two month old (Dr. Gordon confirmed this).  Other than that I am still anxiously awaiting more awake and aware time.  He sleeps a lot. He wants to just eat and sleep on the breast.  He wants to be close to me all the time.  If he's with someone else or sleeping in his crib and I walk in or he hears me talk it's just like the line from one of my favorite movies "Home Alone 2" (I'm obsessed with the oddest movies, don't judge me)... "I knew it was you...I could smell you getting off the elevator"... It's unreal how he knows when I'm there or not.

The other thing about a second child is that you think your heart instantly grows enough to love the two of them.  I think it is more of a gradual process.  In the beginning, with a newborn, it feels more like a maternal primal instinctual love rather than a love that has grown out of all kinds of happy bonding and memories like with a toddler.  Like I was eluding to earlier, newborns don't do much and don't have much personality for you to play with.  I love both of my children but right now the love for each of them is different.  I'm very protective of both Leo and Abby but what each of them needs right now differs greatly.  I'm trying to be what each of them needs so that both stay happy.  It's a challenging and tiring task to find that balance.  So far it's been working out fine.  Thankfully since I am not pregnant anymore and have healed well from the c-section I can move around much easier and have so much more energy.  The things that tired me out and stressed me out over the past few weeks aren't bothering me as much right now.  I have the energy to deal with issues and a more clear state of mind to let the things that don't matter roll right off my shoulders.

Speaking of prior issues, the nanny brigade is currently in training.  I'm not holding my breath with anything right now in that regard.  Thankfully both my mom and mother in law have been on deck helping in numerous ways throughout the day so that I have been able to stay relaxed.  I'm keeping expectations low given the hell I've been through with nanny drama so I won't be too disappointed if something (or someone) doesn't work out like we planned.  Mercy is incredible and such a go-getter.  Ava, the newest addition and our early morning nanny seems very motivated as well.  Both have wonderful, pleasant and caring personalities.  Both can nanny two children.  Both can cook.  Both can clean. Both can work together in a team.  I don't feel awkward asking them to make me a sandwich if I'm stuck upstairs nursing the baby or playing with Abby.  They come to check on me and make sure I'm doing OK and don't need anything.  It feels very different than it did with the last nanny and in such a good way.  David was explaining how even though hind sight is 20/20 he didn't realize how bad the energy was with the last nanny; now he can appreciate how much better things are and are going to be as we move forward.  It's just that the timing of everything was difficult as are the continual moving pieces we've been dealing with on a daily basis. We are hopeful that things will begin to settle down in short order!  (On a side note, I will post the email chain from the last nanny that had me so pissed off in the hospital on the horrid Night 3 in another post where I can bury it.  I just find it interesting and some of you may as well so you can understand why we feel the way we do about the whole situation)...

Last Thursday I had scheduled a sage cleansing with Kristen and Poopak.  After they arrived my friend Elizabeth showed up to drop off some goodies as well.  It was great timing to have them here for the cleansing.  We walked around the house with the sage smoking and with all of our good energy and intentions.  It is a nice ritual to get rid of bad energy and welcome new energy.  I especially wanted to do this before the new year and since the last nanny moved out.  Be gone bad energy!!  Elizabeth showed us a NSEW (north south east west) blessing if you will where you ask the four corners of the Universe to bring and ensure good energy, love, health, and peace in our home. And let's not forget that mercury is no longer in retrograde!!  SO DONE with that!!!

So how's Abby doing with Leo and the adjustment, you ask?  Knock on wood she has been pretty fantastic.  For the most part she seems him and makes a funny high pitched voice while saying "Hi Leo, Hi Leo" and then will kiss his head or kiss his feet.  That's pretty spectacular.  I think the fact that she has Grandma, Grammy, Daddy, Mommy, Mercy, and Elizabeth around to give her attention doesn't hurt.  There's always someone tending to her needs.  She does call for "Momma" a lot and continually check in on me and "touches home base" as they say.  My mom advised me to have an open door policy when I got home from the hospital and that has worked well.  She should always be able to check in with me and the baby has to get use to her noise and disruptions as well. The only problematic way that the adjustment and/or possible anger has manifested itself is with her sleeping habits.  The first couple of nights were hard and there have been other bumpy nights here and there.  We've now figured out to turn her white noise "rain" machine up higher to drown out the sound of Leo's intermittent cries. But mostly, it is because she wakes up in the middle of the night and wants to check that we are still there for her.  Either David or I (or both) will go in there and sooth her, rock her and then get her back into her crib to sleep.  Did I tell you already about the night that I was up with her from 2-3:30 AM then slept on the floor in her room until 5:30 when I had to get up with Leo?  That was fun.  I mean, it didn't hurt my back at all... The hardest issue is that I haven't been able to spend as much time as I'd hoped with her.  I kept saying well, anyone can give the baby what he needs (although not really while I'm breastfeeding) and then I could spend more time with Abby.  It's not worked out that way for two reasons. 1) I'm breastfeeding on demand so that's not predictable and 2) Toddlers are a lot of work and very tiring to deal with while recovering from major surgery.  Anyway, it's working out much better than my expectations anyway! Right now I'm doing my best to be present for Abby and play with her when I can while at the same time breastfeeding and bonding with Leo!

I swore it wouldn't happen but I succumbed to the pressure.  I said no more trash TV shows...but I am now loving the Real Housewives of Beverly Hills. Ha!!!  I've now watched all the episodes (albeit out of order) and I can't wait for more.  I claim it is because I love to see all the aerial footage of our neighborhoods.  Also, our new pediatrician was on an episode as well and I had to laugh. I am a "real housewife" of Brentwood I guess.  Anyway, I did swear to myself that I would not follow another trash tv show but sitting in bed or a rocking chair most of the day and night breastfeeding will change your attitude about things. For sure. But you can learn a lot from a housewife.  Seriously.  The humble and seemingly down-to-earth, oh and one of two brunette wives, Kyle, discusses her marriage in one episode. She and her husband seem to have a wonderful relationship and have been together for quite a while.  Seemingly a feat in Beverly Hills.  Anyway, she explains that in the beginning it was difficult for them and their relationship when the kids were young. The mother gives 120% to raise the kids and the father gives 120% to provide for the family (the analogy is my own) and so you don't have much left at the end of the day to nurture your own relationship.  Again, I'm projecting here but you are basically in survival and coping mode.  That is exactly how I feel at this moment.  Then, as if raising two young kids isn't hard enough I have to battle fucking cancer.  I really want to get through this next year so I can get back to a more normal life.  So I can be a mother.  a wife.  a daughter.  a sister.  a friend. 


Love to you all.  Nighty night.