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