C h e c k l i s t

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          ☑ Chemotherapy
          ☑ Surgery
          ☑ Radiation
          Maintenance Therapy
                     ☑  Herceptin
                     ☐  Anti-Hormonal Treatment

July 26, 2011

Nip Tuck

I am eagerly sitting in the waiting room with much older women wearing a 3 arm hole wrap gown, freezing. The technician comes to get me saying she needs more views and shots. I nervously follow her in the cold room where the cold machine plates press hard on my chest with me standing in the most awkward position. The technician shows me some clouds of tissue and says it is all young dense tissue. I say to myself that I have heard this line before. I ask her if there are any calcifications and she says she is not allowed to interprete the screens to me. She asks me to go back in the cold waiting room. I go back to reading about Will and Kate's US visit. "How I wish I were a princess?". I am so jealous of Kate at that moment. The radiologist comes to get me. Hands me a green slip and says that my mammogram is inconclusive. There is a lot of dense tissue and they cant say that it is all clear until they see my baseline shots from Duke! I am again getting that "somebody just beat the crap out of me" feeling. I go to the changing room and slowly change back into my clothes. My clothes that involve a prostheses. My clothes that cover my not so normal body. My clothes that protect me from the harsh world and people with their judgements. I look at myself in the mirror and decide to wear a smile for rest of the afternoon, to pick up sushi for lunch from Fresh Market and go back to work. To indulge in small talk at work and pretend that I didnt hear the technician or the radiologist.

A few days later, I know that my decision of a prophylactic contra-lateral mastectomy (removal of the healthy breast) is the right decision. I remember what Erin (my nurse practitioner at Duke) once told me. Yes, I will do every possible thing so that I can live one more day for my family, my son.

Next week I am meeting with a plastic surgeon at UNC. I have already met with the surgical oncologist. I will be scheduling my surgery sooner than later. This is something I want to get done in this calendar year and start 2012 freshly. Hopefully I can get back to normal life and work soon. I really am done with all the setbacks now.

The type of reconstruction varies. I will be discussing with my PS what kind would work the best for me.

XO,
Bela

July 16, 2011

All things considered

All things considered, I am sometimes too hard on myself. I was totally in the last post. I have to remind myself to be gentler and kinder to myself.
I had my 3-month(ly) appointment with my oncologist y'day and she said I have some bone loss in my spine, but my femur bone density was within range. The bone loss is primarily due to the early chemically-induced menopause that I am going through. I have a LOOONG survivorship so this needs to be combatted and I cant afford to let my bones crumble. And so I got an infusion to do just that. The drug is called Zometa and it is a bisphosphanate, a compound that takes the calcium from my blood and puts it in my bones. This makes my calcium levels to drop, so I have to take calcium supplements, which has some intense GI related side effects. So I will take some meds to take care of the side effect's side effect's side effect. The infusion has made me achy today and I had some chills last night. I guess your body needs to react in some ways to all the manipulation that is going on chemically. They also need to monitor my kidneys as this drug can cause some damage to the kidneys. Such fun stuff!!!!
I have realized that not only is survivorship hard mentally and emotionally, it is also hard physically on your body that is not like your typical 30 something year old's body, but more like your mom's body (60 something year old). These long-term side effects from all the treatment is daunting. I try not to think about it a lot. A lot of "healthy" people tell me " Who has any gaurantee over life. You could be run over by a car tomorrow". I  have a quote unquote book in my head of all the stuff people say to you to make you feel better (in their minds). Wanna hear some? I know the intentions are good but there is always some "catch". Here are a few:
"It is only hair, it will grow back"
"Wow short hair looks great on you"
"You have a good looking bald head"
Some people who have known me for years will ask me " Did you always have curly hair?"
"You have got a new leash on life", Yes and that is what the local dog-adoption center is called.
"You should follow your dream, do what you love" --- Oh yeah, will you pay my bills? Get me my health insurance?
"At least you caught it early"--- Yes and please explain me how that helps? Breast cancer is pre-disposed to metastasize. That is my reality and I accept it and not get burdened with it on a daily basis.
This is classic: " I didnt call because I couldnt see you suffer". Thanks bud!
"Be grateful, you have Sahil"
"Count your blessings" Yes counting all the chemos, radiaitions, surgeries, side effects, and more.
"Cancer doesnt kill people. Negative attitude does." Really? Wow that is a low blow.
"Negative thoughts cause cancer. You reap what you sow". Really? Then why does a new born have cancer too???
"Stay positive". And that is....
"Live a stress-free life". Looks like you have mastered the concept. Please give me some tips.
"Surround yourself with positive people". Okay then good-bye! See you in next life.
"Some people have zero support system. Dinar stuck around with you." Hmmm. Have no words for this one.
"My "so and so" died of breast cancer". Thanks. I am perfectly aware of my mortality.
"At least you are alive" Yes this has been said to me. Yes I am. Thanks for the reminder. If I were dead, we wouldnt be having this conversation in this world. Unless we both are dead?

Just sitting on my sofa a bit achy from the calcium from the bloodstream being deposited to the bones and having a dry-humor day. So enjoy it with a pinch of salt!

Count your blessings. Be Positive. Shave your head today too.

XO

Bela

July 7, 2011

Ten Fatherless Years

I have been taking stock of my life lately. I think I feel the need to do so for a variety of reasons. On July 13th, it will be 10 years since I moved to the US. On July 29th it will be 10 years since my father passed away. These were two events in my life that have shaped my young adult independent life (well it is questionable whether you are ever independent).

I feel I did a lot of things for myself, Dinar, and our families that could be viewed as my accomplishments, but I feel I failed miserably at some other things.

Also, sometimes I feel that my career never really took off, and I wonder why. Was it because I was just not into it or was it because I was the wrong person at the wrong place time and time over? I have had way too many setbacks at my newest job that I liked the most out of the 3 distinct jobs I have had in the past 10 years. I had a baby and I had cancer. I wonder if I would ever be able to shine in this job ever again. Would I ever overcome this big setback? Will I have the drive to do well? Do I have it in me?

I also wonder how self-worth should be measured. I have a husband, child, dog, house, car, and some spare change at the end of the day. Am I successful? Does it make me “accomplished” in life?

I seriously used to think that papa dying young at the age of 55 years was the worst set back in my life. That was something that defined who I was as a daughter to my mother, sister to my brother, sister-in-law to my sister-in-law, wife to my husband. That one incident had redefined me into this person that I became over the past 10 years. I liked some of her and I wish in some ways she were different.

But cancer seems to have defined me even more distinctly. I am less confused about my choices. I have less tolerance for stuff that bothers me. I like myself a lot now. The only thing I wish to change about myself is my crying. I have always cried a lot. My folks always teased me for being over-sensitive and for crying for littlest of things. I see that in my son. He is sensitive like me. He cries a lot and then he says “mommy I am all done crying” “I am okay now”. I want to be all done crying for life. I just want to be okay at all times.

My son looks a lot like his father but every day I see so much of me in him. It makes me happy and a bit scared. I want him to have all the good things from me and my husband, and spare him of all the not so good things. I am constantly looking at him closely to see if he is gifted, talented, a prodigy of some sort. And then I stop myself and say to myself “leave him alone”. What is important is that he is one happy kid. I can confidently say that I am a good mother and I want to continue being so. Having him is my single biggest accomplishment in the past 10 years.

Papa, I am sure you look down at us and see your two beautiful grandchildren. I am sure it makes you very proud and happy. Well one day I will tell Sahil what an awesome human being his ajoba was. I miss you Papa!

Cherish and Cheer Life!

Bela