20/20 Vision

Doctor's visit today revealed that my right eye, the one with the new lens implant put in during the recent cataract surgery is now 20/20. Woo Hoo!!!

Catching a Cold from Cats and Cataract Surgery

I am told my Leukemia is technically in remission as long as I keep taking the Dasatinib.

I have issues with the chemo in that it keeps me nauseated much of the time. That can be quite debilitating and annoying.  It is hard to get adequate balanced nutrition when all I can eat is crackers. Though at least I do have some good days.

This is Ozzie who lives in Lee Vining, California
I met him the week I was diagnosed with CML in 2011.

Recently I have caught a cold from my five cats. Yes, according to the Vet it is not only quite possible but now proven. We can also give our cats the flu, too! The cats are all well now, but I keep dragging on with exhaustion and needing frequent time out's from daily activities to lie down. I don't know if it is residual from the cold alone though.

I also have a mild form of anemia, low lymphocytes (white blood cells) and not enough protein in my blood, as well as a chronic pancreatitis flare up, all of which could be related to my extreme fatigue. Urgh!!!

On Wednesday, I'm scheduled for a cataract removal surgery and lens implant. The lens will be for distance in one eye. Later, the other lens will be for close up. I'm very apprehensive about the idea of someone messing with my eye! Thank heavens I will be sedated for this procedure.

Though I am told there is no contraindication to having the surgery while I have leukemia, (and getting over a cold) it still concerns me. But, I will chalk that up to being overly cautious and maybe a tiny bit of fear.

My boy friend will be taking me for the surgery, bringing me back and staying with me a couple days. A friend will come on Friday. Then my son will be here for Mother's day. So I won't be alone in my healing process. And.... so that I wont bend over or pick up items weighing more than ten pounds.

Four out of my five cats are at least that weight so it will be a good idea that others will be here to "hoist" them about for me and do the bending over to feed them!

What Are The Chances?

Late for the first day of class, I took the only seat available next to a mysterious young man wearing a dark trench coat and classic fedora hat. He glanced up to acknowledge my presence as the instructor introduced us to the schedule for writing our memoirs. It was then I realized my seat partner was probably very ill. Cancer perhaps. He was not just slender or thin. His appearance was emaciated  His skin more than pale. It was almost see-through. What little hair he had was sticking out beneath the hat was like peach fuzz. Like me, he had come to class to write his life story.

That first day we had a writing exercise and read to each other. My guess about Greg was correct. He was recovering from Leukemia. His story had begun several years before when he was still in high school. He'd been through his treatments, and was in remission when we met. I told him about my having had a rare bone cancer forty years before when I was about his age. There was an easy acceptance between us that I can only describe as a knowing sigh or shared exhalation that no one else in the room could discern. We were both survivors!

Twice a week for that first three weeks we shared our writings with each other, and sometimes with other members of the class. That fourth week I went to class with a heavy heart. My doctor had sent me to an oncologist. I had been diagnosed with Leukemia. It's a fairly rare cancer. According to government statistics for that year, in the US there were approximately 271,880 people alive who had a history of leukemia. In the county where I live there were only 32 Leukemia patients. It seemed so odd to realize that the two of us attended the same college, the same class and sat beside each other. What are the chances of that happening?

Though mine was a different type of Leukemia than Greg's, we had one thing in common called the Philadelphia Chromosome. I had no idea what that was, but Greg explained. A couple times after class we would stop and chat. He was always willing to help me understand. What was incomprehensibly new to me was old stuff to him. He asked me questions, good questions that made me think, that made me take to my doctor to get answered. We shared symptoms and how we handled them. We shared the emotional impact. He told me funny stories too, told me about Jacob's Heart, and Team in Training and Robin Williams coming to visit him in the hospital who had him laughing. His eyes lighted up when he spoke of these things. A fire burned there shining from his soul.

One day on campus, I saw him climbing a steep flight of stairs. That was something I couldn't do, and it surprised me. He seemed so frail beneath that trench coat, but there was a superman inside. He had been fighting his Leukemia for a number of years. He had suffered the ravages of chemotherapy. He'd had a bone marrow transplant. He'd been bedridden and close to death. He had recovered, recuperated and healed. Why would climbing stairs be a daunting thing for him when he already had the strength to beat cancer? I was encouraged for my own future. I was uplifted by his spirit of not giving into weakness. I was inspired to let my leukemia journey to just become another of life's challenges and not let it become something to destroy who I really am.

Today, another student from that class asked me if I remembered Greg. Of course I did. I was numb when she told me he had died just a few weeks ago. She had seen his obituary in the local paper.

I went on the internet tonight looking for his obituary. I found one for a Gregory Melendy. But, I couldn't make myself believe it was him. Some other young man with the same name had passed away. I studied the picture. Long hair, healthy sensitive face. Nope. Not my Greg. My friend must be mistaken. I looked harder at the picture. Read the obituary again.

There... a link.... saying to make donations to a music scholarship. I clicked on that page. Another young man, no hair this time. But full of face, smiling. I stared at it. The eyes. Maybe the eyes are familiar, I thought. No... it must be someone else with the same name. Just a coincidence that he attended the same college where I had met my Greg. Just a coincidence.

I stuck to my denial as I searched and read all the pages Google took me to see. I studied each picture. Finally it sank in. It was my Greg Melendy.

I am very sad.

What You Don't Know Can Kill You

Since being diagnosed with CML my blood lipids climbed. The reason why? Because I could no longer take any statin medication to keep it healthy.

Statins are contraindicated with Dasatinib (Sprycel) which is the chemo drug I am taking. It is because of the way they are absorbed in the body through the liver. To keep the explanation simple, just imagine a turnstile and two people attempting to go through it at once. Statins are the bully to pushes Dasatinib out of the way to pass through the turnstile. So your body never absorbs the dosage you are supposed to be taking to treat the leukemia.

That becomes a bit of a quandary.

Keeping things in the dark is not healthy!

When I began treatment, all of my standard medications that were also bullys got taken away. Without statins, my lipid counts shot upwards into unsafe levels. Considering that my tummy didn't like the chemo and I immediately lost a lot of weight due to ongoing nausea, one would think my cholesterol would not have climbed. I stuck to a heart healthy diet with lots of fruits and vegetables and no junk food, it didn't help. (I couldn't have eaten junk food even if I wanted to.) Though, admittedly, because of ongoing nausea, some nutrients were not absorbed. Still, I was shocked with what happened to my lipids.

I was very frustrated, unhappy and annoyed. Especially annoyed. With continued high lipids to challenge my heart health, it began to look like I would have more medical problems to deal with! Believe me, I've got enough diagnoses to educate a med school student. Was there nothing more to be done?

I researched information on Dasatinib. I contacted the maker, Bristol-Myers Squibb to see if they could recommend something. No, they said to talk to my doctor. My primary care doctor was adamant that all I could do was to keep to a healthy diet. My oncologist could not give me any suggestions.

Why would a drug manufacturer not have some kind of suggestion? I understand why my primary care doctor could only advocate diet and fiber. Prescribing chemo drugs was not in her realm. And why hadn't my oncologist investigated further to see what else could be done? It all seemed quite irresponsible to me. I wondered how many other patients go through this and feel helpless. How many just go along with the situation and accept things as they are? No, don't tell me. I don't really want to know. I really wish that there could be classes one could take to become a more savvy medical consumer.

I've learned over the decades while dealing with my myriad of medical problems that if I don't keep a watchful eye on things, mistakes can happen. I wanted to solve this dilemma of the lack of a safe drug to take. The more I researched the more I learned. Pravastatin is okay to take for a person who is taking Dasatinib! Pravastatin is NOT A Bully!

I presented my doctors with the evidence and now I have taken Pravastatin for two months. I am so relieved and happy. Look at the results:

Chart

Component	Standard Range	1/16/2012	2/2/2012	7/9/2012	3/1/2013
Total cholesterol		289 H	274 H	249 H	192
Triglyceride		276 H	308 H	221 H	125
HDL cholesterol		47	44	35 L	57
LDL Calculated		187 H	168 H	170 H	110
VLDL (Calculated)	5.0-40.0 mg/dL	55 H	62 H	44 H	25
Cholesterol to HDL Ratio		6.1 H	6.2 H	7.1 H	3.4

Vanity... Vanity... All is Vanity

Watching Diane Sawyer on the news tonight, it struck me how well she has aged. Granted, she might have had a little "help". But, she still wears her make-up well. It seems to me that older women, no matter how many nips and tucks or surgical interventions they might have, make-up is a tell tale problem. Even millionaires, no matter how well done the make up, still cannot hide the years.

Oh, I know this sounds petty. Yes, it is. I suppose. But the idea of lost beauty and aging has hit me very hard especially this last few years. I never thought it would be possible I would react this way. I had the attitude I would grow old gracefully and accept the changes as they came. But, that's not what has happened. I've learned I am not without vanity.

2003 at age 58

Since the leukemia diagnosis, my appearance has changed drastically. My skin has dried and my face has wrinkled. Shall I blame the leukemia for the changes? Can I say it is the fault of the chemo drug I'm taking? Could it simply be old age suddenly taking over my body?

The chemo drug definitely affected my skin. Within a few days of beginning it, I got a bumpy rash. My skin suddenly felt like sandpaper. With the help of my dermatologist, I've been able to have a little control over it.

Though the bumpiness is tolerable I shall miss it's previous softness. Like a child's comfort blanket, it has disappeared. Not only that, my skin has gotten very dry.... very, very dry. That most certainly has an aging effect.

Because of the chemo, I've lost a considerable amount of weight. That's a good thing, though. I needed it. However, losing weight, especially as fast as I lost it, causes disappointing results in appearance, too. Where the face was once plump and sassy, it is now sallow and saggy. The body has lost a lot of muscle mass, too. 'Nuff said about that!

2012 at age 67

It's been a bit of an identity crisis for me. I was used to being considered young looking, and still pretty into my late 50's. Received compliments and sometimes even a head turned in my direction with a "come hither" look from men younger than I. Admittedly it was flattering. I didn't know how much it fed my ego. Nor, how I would miss it.

Suddenly, I look in the mirror and I don't know that old woman. It's a shock.

I know I will eventually become familiar with my new appearance, if I will just look in the mirror every day and acknowledge that the face I see is mine.

I think about how frivolous this all is! What am I complaining about?

I am so thankful I was not diagnosed with leukemia before these new tyrosine-kinase inhibitor chemo drugs were created. The first one, Gleevec was approved for use in 2001. Before that, the average length of time someone survived with Chronic Myelogenous Leukemia was about six years. The one I'm taking, Dasatinib, is 325-fold more potent for attacking the CML. My survival is pretty much assured. I should live out my life until I die of something else.

Well, it is what it is. An older woman, a senior citizen... me, complaining of lost beauty and confused about identity. Yet, I'm alive and doing better than I was two years ago when I was in so much bone pain and having night sweats with my blood counts sky high and bone marrow not working right. And still, there is a part of me, a part deep inside, the one that knows without a doubt that I'm really twenty-something. At least it always feels that way.

I remember when my mother was in her eighties and in a nursing home. She complained about the old ladies at the lunch table. Astounded, I blurted out, "Mom! YOU are an old lady!"

We laughed.

Now it's my turn.


“When you are five, you know your age down to the month. Even in your twenties, you know how old you are. I'm twenty-three you say, or maybe twenty-seven. But then in your thirties, something strange starts to happen. It is a mere hiccup at first, an instant of hesitation. How old are you? Oh, I'm--you start confidently, but then you stop. You were going to say thirty-three, but you are not. You're thirty-five. And then you're bothered, because you wonder if this is the beginning of the end. It is, of course, but it's decades before you admit it.” 
― Sara Gruen, Water for Elephants

Celebrate

This evening I've learned of the death of a friend. She "passed with grace and dignity" said her nurse. "She finally got her wings" her sister reported.

Digital Art by Elizabeth Munroz

Her name was Jill. She had Chondrosarcoma, a very rare form of bone cancer. It is not related to Leukemia. At least that's what the scientists say. Though it's proven there are a few genetic mutations in common.

I once had Chondrosarcoma more than forty years ago, and struggled with recurrences for many years before I was free of it. The fact that I have Leukemia now is just a coincidence.

When I think of Jill, I cry. Of course. How is it I survived and she didn't?

I had a lot of major surgeries to remove bones from my body, including partial amputation of the pelvis. Jill had a lot of major surgeries, that removed bones from her body, which included removal of an arm and her scapula.

As a child, I always thought the scapula bones were indicative of where we would grow our wings out when we became angels.

When Jill's sister said she finally got her wings, I imagined her Chondrosarcoma cancer ridden scapula suddenly free of disease and back in her body all healthy and glowing as her wings formed. And she flew away free with great joy, celebrating her death.

Digital Art by Elizabeth Munroz

Perhaps it's childish of me to think that way. But, I don't care. It comforts me.

It also reinforces my belief that life is precious and should be enjoyed to the best of our abilities.

As a society, in general, we don't celebrate death. But when those who stare death in the face with cancer suddenly it hits home to those of us who love them, to celebrate life, at least for their sake.

So, tonight, though I cry with sadness knowing that Jill suffered the last stages of Chondrosarcoma metastasized to her lungs, I'm grateful to know she was able to die with grace and dignity. And so, I will celebrate life with appreciation and in Jill's memory.

Trying to Stay Positive with Pills

For the most part, I think of myself as handling the fact that I have leukemia just fine. I don't give it much thought. It's not always on my mind. But, today is a different story.

I have "forgotten" to take my pills regularly lately. I know part of it is stress. When I get stressed I can't think straight. First, I am focused on the problem at hand and I forget to eat, therefore I forget to take my seizure medicine. Then I end up with a seizure or two.

Don't worry, I don't have the kind where you fall crashing to the floor. But, just spacing out can knock down my ability to follow through on things. So, once I have the seizure, I forget that there is anything important to do. (like take my meds!) It's actually nice in a way. I just feel so pleasantly spaced out and unaware... kind of dreamy... sort of like a short trip to LaLaLand. Even after the "trip" is over, it's not over, because I don't just return to whatever it was I was doing with the same intent of purpose as before. Oh, I'm not mindless. I just don't care. If someone reminds me, "did you eat? did you take pills?" I'm on track.

To complicate matters is the ongoing nausea from the chemo pill... Dasatinib/Sprycel. So, if I am feeling nauseated, I don't eat. If I don't eat, I don't want to take pills, any pills, on an empty stomach. Because of the chemo pill, I can't take the typical tummy relief pills other people take. So, basically I just have to live with it and do what millions of people have done forever. Live with it the best I can. It's obvious to me that this is part of the problem of why I "forget" to take my pills.

Seems to me there is a subconscious aversion to taking the chemo pill, because the resulting nausea is unpleasant. But, here I am without adequate intake of my seizure med, which triggers more issues. Part of the problem has been recently resolved, though. I now have a prescription for a dissolvable version of my seizure med.

But, here I sit today, feeling sorry for myself. I know I MUST take the seizure medicine. It's in my hand but just the idea of putting that sweet thing on my tongue to suck on it until it is absorbed makes me want to hurl. Hmm... I wonder if there's a suppository.

Needless to say, it's hard to stay positive today.

Thank You, Cancer

Chondrosarcoma a rare form of bone cancer

Thank you Cancer, for changing my life for the better. Ha ha! Bet you thought you couldn't do that. But, you did. Oh yes, you made me suffer. But, you know what Cancer? I learned a lot about compassion and caring and humanity because of that. I learned to recognize when other people were hurting and needing help. That changed me for the better for sure, because I care about others so much more than before you came along trying to frighten me. You terrified me, in fact. But, because of that, I learned I am stronger than I thought I was. I learned I'm stronger than you, Cancer. Nyah! Nyah!

Thank you Cancer for giving me patience and fortitude, and gratitude. Thank you for teaching me how to be humble and brave at the same time, for teaching me how to cry out loud and not be ashamed. Thank you for helping me to understand that it is okay to ask for what I need, to not feel a burden to others, especially if they have said, "if there is anything I can do..." I understand it's okay to lean on others when I need to, and I can offer kindness in return, too, whenever they need it. And, hopefully, understanding.

Thank you for teaching me how to let go of fallacious beliefs, pettiness, and small minded thinking, for giving me the opportunity to disconnect myself from things unworthy of my attention. Thank you for teaching me what is important and "don't sweat the small stuff".

You taught me to research, to get serious about educating myself in every aspect of my diagnosis, of the condition of my health. I've learned a lot of things I never knew before, important things, useful things that have helped me on my way through life. I've been able to share that information, too. It was hard to learn all that awful stuff you do, but I learned too, how the body works, how science is always making improvements. I've learned there really is hope even in the face of darkness.

Aptos Beach, California
Storm is brewing at sundown 

Thank you Cancer for teaching me to respect my body, to listen to it, to take the best care of it as possible. I certainly wasn't doing a good job of that until you came along. Was I? And thank you for giving me the opportunity to explore the world of nutrition and educate myself, and enjoy food in a whole different way. I have such a large variety of foods I never would have thought about eating before. I've developed better shopping skills and become somewhat of a gourmet. Food is not just something I stuff in my face anymore. Food is something to enjoy fully. Thank you for that, Cancer.

You're not going to believe this one, Cancer! Thank you for helping me get more organized and focused. Oh, I know I will never be perfect at it. But, you know what? You taught me to put my life in order, to take care of business... the important business that I didn't want my family to have to deal with in case I... well you know better than anyone, Cancer, what I'm getting at.

Thank you, too, for teaching me about how to communicate with doctors and nurses and others who helped me. I learned so much about how to get my point across, how to listen, how to keep track of my medical appointments and most of all those very important papers. Yep, back to that organization thing again. And while we are on the subject, Cancer, thank you for showing me that nurses, medical technicians and doctors are human beings, too; that none of them are in the business of making money off me, for showing me that they have hearts and souls and work hard to help people heal.

Thank you Cancer for teaching me how to face my fear of death, my fear of mutilation, my fear of loss of self-identity. Thank you for giving me peace of mind once I learned to accept life with all it's beauty, and depth.

Elizabeth Munroz, Sterling Cridge, Dar Parsons, Storm Cosby
Indianapolis Indiana.1994

Thank you for teaching me to not get caught up in frivolities, teaching me that an immaculately clean house is not the most important thing. Sometimes it's more important to rest perhaps even... a lot of time.

Thanks for teaching me that my hair doesn't have to be "just so", that I don't have to be embarrassed about the imperfections of my body or the condition of my skin. It is what it is. I'm so grateful for that because now I don't judge others based upon their appearance either. And it's so much easier to see beyond that outer wrapping and discover a person for who they really are inside. It's so much easier and feels so good to be kind and loving. It takes so much energy to be hateful and mean spirited. I understand that now.

Thank you Cancer for showing me that sometimes it is necessary to stop what I'm doing and take inventory of my life to get my priorities in order. Did you know that, Cancer? You taught me how to simplify my life, to not take on more than I could handle, to not allow myself to be so overwhelmed trying to do too much. You taught me how to say "no" or "later" or "I'll think about it" before jumping in and committing to something I could not complete so I wouldn't be disappointed in myself for failing. You taught me to not make promises I couldn't keep. It lifted a great burden off my shoulders, that feeling of obligation that I was dragging around like a load of laundry. Wow! That's a lot! What a tremendous change for me. I'm not perfect at it, but I'm way better. Yes! Thanks for that!

Thank you, Cancer, for teaching me to be a daredevil. Really... I mean... I like to take chances now that I wouldn't before. Like stand up and walk when "they" said I couldn't. I might have fallen down. I might have not been able to walk. But it was worth trying. "If at first you don't succeed, try... Well, you know the phrase, I'm sure, Cancer. You've taught me to try new things I would have been too timid to do in the past. Like dance with abandon not caring what people think and have fun, every sweaty minute of it, even though I knew I might hurt in the morning. What did I have to lose? I would be in pain anyway. Might as well enjoy it. Eh, Cancer?

Elizabeth Munroz and son, Xavier Rodriguez
1979 Covina California

And thanks to you, even though I couldn't have a career, I dared to volunteer to teach children how to read and adults how to speak English. I could get up in front of people and give speeches about how to find their ancestors. I did things I never thought I would be brave enough to do, that one thing "they" swore I could never accomplish. I got pregnant and had a baby! Yes, Cancer, because of you I did things I never dreamed possible. Thank you, for that

But now, Cancer, you raised your ugly head to make me sick again after all these years of leaving you behind. I recognized you in your new disguise and I'm not afraid of you anymore. Go ahead, Cancer, I know you are going to do your thing. But, I'm not cringing. I'm not wishing I could run away. I'm not giving up! I'm going to live my life as fully as possible whether you are in it or not. Because there's one thing I learned on my own Cancer. There's one thing I learned how to do by myself. And that is to face you down and take up the challenge, and fight the good fight and keep on going and do the best I can to cherish each moment, whether dark or light. Because they are my moments and no one, not even you, Cancer, can take that away from me!

~~~~~~~~~~~~~~~~~~~~~~~~
Written and copyright by Elizabeth Munroz
Previous survivor of rare bone cancer called Chondrosarcoma
Presently living with Chronic Myelogenous Leukemia

RESILIENCE

Hang in there, Girl
Photo by Elizabeth Munroz

A friend of mine in the cancer community recently said, "Resilience is defined as the ability to harness inner strength that can help a person to rebound from a setback or challenge. Resilience won't make your problems go away — but resilience can give you the ability to see past them, find enjoyment in life and better handle stress. If you aren't as resilient as you'd like to be, you can develop skills to become more resilient.

Click the link for some quick tips

Leukemia's Link to Oil

Not an oil derrick
Located in Orcutt California where I once
lived a stone's throw from real ones.

I keep coming across the same statement "exposure to some chemicals, such as benzene, increases the risk of leukemia"

So, how would someone even know if they had been exposed to benzene?

What is benzene?

If you look it up in wikipedia, there's a lot of blah, blah, blah mumbo jumbo.

But, here are a few comments I can relate to:

"Benzene is a natural constituent of crude oil, and is one of the most basic petrochemicals."

If I am not mistaken crude oil is the kind of oil that comes out of the ground. Right? You may not think you've ever been exposed to that because you are not working on any oil derricks.

But, wait... how about Kerosene. Any exposure there? I don't think many people use it on a regular basis, but I grew up in an age where it was available and used variously around the house. When the electricity went off we would light kerosene lamps. That meant pouring some directly into the lamps by handling the container the kerosene came in. When working out in the garage on his car, my father would wash his grimy hands with kerosene. My mother used kerosene to get the paint off the paint brushes she used to paint the walls. Guess what? I helped her, and washed the paint off my hands the same way. That is only an example and not any indication of my thinking this was the cause of my leukemia. Just an example of how we might be exposed to benzene and not realize it.

Petrochemicals, as mentioned above, are a bit more complicated to explain. Best way that I understand it, and this is NOT comprehensive, is that things that are made from crude oil are petrochemicals. So, it's kind of like taking a block of butter and melting it. You've changed it from a solid to a liquid. If you keep the burner on and the melted butter burns, then you have browned butter. If you keep cooking it, then you have a mess, which might flame up and cause smoke. So, you have taken a form of oil and changed it's "chemical" composition. Same thing with crude oil.

It's really quite incredible to realize all the things that can be made from crude oil. Of course, we all know gasoline comes from crude oil and this is a major concern for the world. Will we run out of it? Will there be enough to last us in the next generations? Will we go to war over the price of gas?

Some products created from petrochemicals you might be familiar with are:

Adhesives and sealants
Agricultural chemicals such as used for gardening.
Ammonia
Antifreeze
CD's DVD's
Construction chemicals
Cosmetics raw materials
Detergents (for laundry, dishes and other cleaning)
Dry cleaning solvent
Electronic materials
Epoxy, used in paints and glues
Food additives and flavorings
Fragrances
Inks, dyes and printing supplies
Nail polish remover (acetone)
Nylon
Packaging, bottles, and containers
Paint, coatings, and resins
Polyesters
PVC pipe
Rubber and plastics
Rubbing alcohol
Styrofoam
Surfactants and cleaning agents
Synthetic dyes

So, if you think you have never been "exposed" to benzene or petrochemicals, think again.

That being said, I wouldn't start going through the house and doing a major cleanse. You would have to move out into the forest somewhere to get away from all those things that are commonplace to us. And truly the forest has it's risk factors as well.

Truly, when it comes to exposures to chemicals which are carcinogenic and can cause leukemia, we have to look deeper. Are there any contaminated landfills near where you grew up, or nearby your home, school or work?

You might say no. But, to be sure, you would need to do some research. There are so many pieces of land that were once contaminated that have now been re-purposed. It behooves you to find out where they are in your community. I just remembered while writing this that I once lived in Orcutt, California where oil was discovered and drilled for right up to this day. I lived just over the hill from where they were doing the drilling and pumping of oil.

Don't just sit there and say there is nothing you can do about it. There are things you can do to lower your risk aside from moving away. Knowledge is power. Empower yourself.