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Monday, December 24, 2012

Forever Young

In the middle of the night between December 24th and 25th, 1969, the clock on the oven in grandma Edith's house stopped.  43 years ago, my grandmother, Edith, lost her life to breast cancer.  The clock in the Grogin kitchen froze at the exact hour. She was only 40. In a time when there wasn't much hope or success at treating, let alone curing breast cancer, she left behind a mourning family including my dad, 18,  and his two young brothers aged only 14 and 9.

My grandmother was named, Ehta, and I too was given the Yiddish name, Ehta, in her blessed memory. I was the first grandchild and the first grandchild that grandma Edith never knew. When I was born, it seemed right to name me after her. Grandma Edith is the young and beautiful lady in the black and white photographs with the perfect smile that seemed to invite you to come closer.  She was the wife and mother who everyone adored and she never grew old. I remember the year that my dad became older than his mother. Now, at 37, I'm probably the same age that my beloved grandma Edith was when she became sick.  I wish I knew more about her. I wish she was here and I wish I could change what happened to the beautiful precious family back in 1969.

I grew up knowing that my grandmother, Edith, was a loving and devoted mother to her three boys. They were her life. I grew up knowing and seeing how her illness and her death effected my grandfather, my dad and my two uncles. The loss of a mother is something that never goes away. My heart aches for my grandmother Edith, for the years she missed and the milestones she never reached. My heart aches all the more for my grandfather who lost the love of his life. Nothing adequate can be said for the loss that my father and his two young brothers suffered.  This is where I connect with my grandma Edith today. I see in my heart, the dying mother saying goodbye to her three young children. I see three boys suddenly without the stay-at-home mom who raised them.

43 years later, I'm mourning my grandma Edith -  forever young, forever beautiful, forever beloved, and forever missed.



Wednesday, December 19, 2012

Dexa Is Bad... mmmmkay

I'm obviously having a hard time. I admit. I have had the MOST AMAZING journey. I'm so thankful and grateful. Unfortunately, I did have a bump and a pause for two weeks but that happens with almost every patient in chemo some point along the way. I fell in between the cracks though. I've had 5 different chemo nurses instead of one or even two... And now in my last treatment, I was even given  steroids when I understood I wouldn't be getting them. When I reacted, the response felt like such a slap. I'm especially upset because it's completely uncharacteristic of the usual care I've seen here. Most every nurse I've encountered has shown utmost patience, care, and respect. In my latest, I just feel like a number. Not an individual. I voiced concern about treatment as an individual.

After realizing I'd just received a bag of Dexa-methasone before a Taxol treatment AFTER being told previously that I don't need cocktail drugs before receiving Taxol, I asked the nurse why I needed it. Her response was, "You got Dexa because you demanded it."

My response: "I don't demand things. I'm a patient here who takes interest in my treatment. I ask questions, I want to make sure I understand what's happening in my treatment."

Nurse's response: "It says in your medical file that you demanded Dexa even though you don't need it. You know Dexa is bad for you. There are serious side effects."

Me: "Listen, I've had some very bad issues with nausea after treatment and I've expressed fear about dealing with it. You connected the Dexa but you didn't ask me about my reaction to the last treatment. How are we supposed to know if I need it or not?  I had no idea it said that in my chart and it was written by another nurse, why not just ask me how I feel before giving it to me especially if you think it's bad for me?"

Nurse: "You demanded it. It's in your file. Do you know there's a nurses strike going on for the past two weeks? We're understaffed as it is and not only do we not have enough nurses to deal with our  regular stress, today we have double the usual patients AND the ER stole one of our nurses to help down there. I shouldn't even be working today, I should be on strike!"

Me: "Well that explains why I'm getting Dexa. I'm sorry about the strike, and I support the nurses 100%. I'm getting chemotherapy here and I feel that I've been bounced from nurse to nurse and not really explained this issue with the Dexa. It really bothers me that I'm getting a bag of steroids if I don't need them just because a nurse wrote that in my file... I don't understand it."

Nurse:  We're overworked... we don't have time... blah blah blah
 


Tuesday, December 18, 2012

Don't Know When I'll Be Back Again

In July, 2012, I was thrown into a new reality and I dealt with it in the only way that I knew how. I had to find the meaning in it. I was gathered up into spiritual arms and carried for the past 5 months on a cloud of faith, euphoria, love, and desire to be the strongest woman to ever win the fight. I felt heightened feelings of happiness, understanding, and love for many months. I reacted with physical strength and resistance to pain and side effects of poisonous chemotherapy drugs. I thrived on the fight and found meaning where I never thought I'd need to look.

Just over two weeks ago, my magic shattered. It all came crashing down and I haven't been able to breathe the same or smile the same or laugh or accept or inspire.

I spent a lot of time in the last couple of weeks trying to analyze and understand what happened. What final straw broke my spirit? I'm surrounded by love and supported by friends and family yet I completely lost my footing with my medical care providers. Lack of communication, lack of interest, and plain bad chemistry has left me completely vulnerable and feeling anger and sadness that I never expected to experience... to the point that my blood is protesting. I haven't been able to recover. I'm stuck yet unwilling to be pulled all the way down.

Maybe it was unrealistic to believe I could conquer all these losses and go through chemotherapy without sinking to an excessive low at some point? Now that I've been home from my reality-vacation for over two weeks, I've decided it's time to leave. If only I had a ticket.

Tuesday, December 4, 2012

No Go Chemo Take 2

Yesterday, I was supposed to have a chemotherapy treatment that was postponed due to low blood counts. While some of my red blood counts came up, unfortunately all of my white counts were lower than the previous week. I was told that my body can't handle the dense dosage. Perhaps this will mean that I will only have two more chemotherapy sessions - instead of 6.

The early morning rush that I've come to accept as my weekly chemo morning routine is part of the unpleasantness that goes along with the whole cancer/chemo thing. It's part of the process and you have to make the best of it. I'm okay with rolling with the punches and keeping a shiny happy attitude about it. As of yesterday, I'm completely aggravated and provoked. What's getting me unhinged at the moment isn't even directly related to cancer or chemotherapy. I missed two consecutive treatments without any follow-up in-between.  Now I'm in a supposedly dangerous situation that I can't even deal with because there's an unfortunate disconnect between the hospital that provides and decides my care and the health care system that pays for it. While the financial coverage has been excellent and covers my expenses for drugs and chemotherapy 100%, I'm being forced to invest my entire day in chasing down approval for a shot of Neupogen which I supposedly need in order to restore my currently non-existent immune system. In doing so, I've spent needlessly risky time standing on lines in germ-infested clinics and pharmacies full of coughing, sneezing, and spluttering men, women, and children.

During this I've encountered a long list of people trying to help and genuinely working to get the approval and yet 4 hours later... clinics and pharmacies are now closed and I still don't have the approval or the shot. I cannot believe that a patient undergoing chemotherapy with nearly nonexistent resistance to germs is expected to run around like this!

Right now, I question and doubt everything about my treatment and I'm sure that's not a good thing to be doing at this stage and especially not after missing two sessions of chemotherapy in a row. I feel like my shiny, happy persona and image of strength is partially responsible. Sometimes being "strong" gets you un-worried about and overlooked... apparently. Perhaps being bedridden and dying of pneumonia, contracted from my severe neutropenia would get me urgent care and recognition? Only time will tell.

UPDATE: as of 14:30 I have the approval

UPDATE 17:30: Thank u to each and every person who took the time to read, for caring, and taking the time to write. I'm keeping things real. My blog is a very therapeutic outlet for me and I share raw emotions on it. Thank G-d everything has worked out. I never waver in my belief that everything that happens in life is l'tova (for the good). Having said that, I'm a survivor and not a victim. When something happens to me, I'm not a bystander and I take charge. Baruch Hashem this way of life keeps me extremely happy and upbeat and when I'm down... It leads me back to the path of happiness every single time!