Here I go again...

Hello again.  No, it isn't Bilbo Baggins.  No, Whitesnake isn't performing in my living room, “Here I go again on my own…”  Yes, this goddamn cancer is back.

Most of you have read the initial email (see first blog entry) discussing my recurrence and the recommendation for transplant.  With Evan now almost 5 years old, though, I refused to go that route.  It would be so traumatizing to have a parent be gone for so long.  Plus, his birthday falls on Mothers Day this year.  No way I am missing that.

Plus, at this point, so far the cancer has shown up in the form of one lump on the back of my shoulder.  I am very aware that my cancer spreads quite rapidly; however, with only one lump, transplant seems like the equivalent of dropping a nuclear bomb (transplant) on my body.  So – no pun intended – I decided to go with radiation, instead.  We went to a subcutaneous t-cell lymphoma specialist who agreed that transplant was too excessive and recommended local radiation as an alternative, and the very capable physicians at UCI’s national cancer center are now administering it on a daily basis for the next several weeks.

It's the Dynamic Duo for Life!

 Of course, as many of you know, Joe works at UCI and it’s led to some interesting interactions when I come in for my treatment.  The first time I went to check in for my radiation consultation, I went up to the front desk and introduced myself, saying, “Carmichael, checking in.”

The receptionist looked confused.  “Wait, are you here to see Dr. Carmichael?”

I started laughing.  “No, I am Elizabeth Carmichael, and I am here to see Dr. Ramsanghani.”

“Oh!”  She said and explained, “We have a Dr. Carmichael here on the 3rd floor, so I thought you were here to see him.”

“Yes, I know!  That is my husband!”

"Oh!” she responded again, laughing.  “Hello, Mrs. Carmichael!”  Then she began to realize that I was checking in for radiation-oncology, and looked a bit confused.

“It's okay,” I reassured her.  “Don't worry, I’m here to see Dr. Ramsanghani.”

My thoughts (in this order):

1.     Crap, I cannot do this incognito. 

2.     Double crap; they know who I am now.

3.     Sh*tballs; do I have to look presentable coming to radiation everyday, now?

4.     OMG; now I can't do everything in my active wear.

5.     Hahaha, remember that funny video about women who aren't even exercising doing everything in their active wear?

6.     Oh, so sad, no active wear or barefaced-messy-dirty-ponytail.  Does that mean I have to shower?

7.     I should bring doughnuts or bagels or something.

 

I guess there are pros and cons to being the patient-wife of a cancer doctor. 

 

*                *                *

I have already undergone one week of radiation therapy, and I can tell you, it sucks the second time around.  Yes, I understand radiation is better than chemo, but it really is disheartening to think that the cancer is back.  Coming to grips with the realization it has recurred has been really difficult; I feel it reverberating in my heart and soul.  I think I never quite accepted that the cancer could come back; now not only is it back and likely to come back again, I believe that it is likely to kill me.  

I tell people that I just hope to make it long enough to see Evan graduate college and see the beginnings of him making his way into the world.  Preferably as a doctor – he has been to so many appointments with me, I think he will actually become a doctor, dohl choices notwithstanding.  (Yay, Evan!)  And as you all know, I will probably not be able to rest, eternally or in the more immediate context, until I know Evan will be successful.  Not rich, but successful.  Educated, smart, kind, and socially conscious.  You know, the usual stuff parents dream that their children will be.  Oh, and happy.  I want him to be happy.

 You can lead a baby to a stethoscope...

So, the first week of radiation has come and gone.  What have I learned?  First, I am always cognizant of the fact that I am Joe’s wife.  I must wear sundresses or strappy dresses so that I won't have to undress for radiation.  I am a bit uncomfortable being under so much scrutiny at UCI.  They all know I am Joe's wife, so I don't feel as if I can ask any questions (despite my sister’s constant exhortations that I should be doing the opposite).  I must be strong and stoic.  I must be graceful under pressure.  I must be calm and kind.  As most of you know, this is a very difficult role for me.  My bulk orders of home bandages are testament to the fact that I am clumsy, not graceful; I am stoic, but only because I am socially awkward; and I am only calm when I am in control, which I am clearly not in this situation.  But the thought of undressing in front of the technicians or nurses makes the whole situation feel so much worse, so I am relegated to wearing sundresses that expose my shoulder and shivering through the cool mornings when I have my appointment.  Basically, I feel ridiculous.

Don't mind me, nothing to see here!  Just Liz in her sundress, hehehe!

Secondly, the radiation resident knows some of my history, which makes me feel even more awkward.  His wife is a plastic surgery resident who assisted in my right cheek cancer reconstruction surgery two years ago.  My prior surgery to remove the tumor in my head had left the skin fused to the bone, badly scarred, so I had surgery to remove some of the scar tissue and restore some facial function.  What a small world, and what an embarrassment.  They already know too much about me.  I am such a private person, and it is killing me that they 1) know I have cancer and 2) suspect I am vain.

Finally, I am forced to smile, not complain about anything, and I am not comfortable asking any questions.  So, thank goodness, I still check in with my main oncologist at Kaiser, and ask him all the questions that I feel are too stupid to bring up to the physicians at UCI.  After all, I don't want Joe's colleagues thinking that his wife is an idiot.

The first week has been tougher emotionally than physically.  I go everyday, and it is demoralizing.  A reminder of the cancer recurring.  A reminder that I still, after all that pain from before, have not beaten this thing. John Mayer sucks. My body is not a Wonderland, you idiot; it is a Princess Bride-like Pit of Despair.

I am just starting to read Anderson Cooper's new book, a pseudo-autobiography and biography of himself and his mother, Gloria Vanderbilt.  Gloria Vanderbilt is herself a very eloquent writer, poet, artist, actress, and heiress.  She fell ill upon her 91st birthday, and wrote these words that resonated with me:

It is a cliché, but a true one, and I understand it only now: Health is your most treasured gift.  As long as you have it, you are independent, master of yourself.  Illness grabs the soul.  You plunge in and out of hope, fearing you will never recover.  All that I have been, all that I am, all that I might become no longer exists.  I am alone.  Nothing can distract from the truth of this finality. 

How can my body betray me when there is so much still to be done?  You see, it isn't age itself that betrays you; it is your body, and with its degeneration goes your power.  You end up obsessed, entirely focused on your health, paying attention to every nuance, every ache and pain.  Instead of working or living your life, you waste your time on appointments with doctors.

How true this is.  I have told many of my friends after that first bout with cancer, I feel my power has diminished.  Like Galadriel says in Lord of the Rings, after she loses the ring’s power, “I will diminish, and go to the West.” 

I used to be so confident, so brash, so proud.  But, even so, there is light.  I have Evan, and I have the loving support of my friends and family.  I cannot let this beat me down, despite the darkness of its future implications, and the severity of its current bite.  I will, I must prevail, and make it through to the other side. And so I will.