Celebration of Death

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. They say. I wonder if twenty years down the tunnel of time, they might say something different.

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 a childish  whim 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.

If my Chronic Myelogenous Leukemia brings upon the cause of my own death, may I handle it with grace and dignity. Let me go quietly and peacefully. Whether alone or with someone holding my hand, it doesn't matter to me. Those who have gone before me will be there to take my hand. I believe in that possibility because of two previous Near Death Experiences.

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.

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.

Elizabeth Munroz, Sterling Cridge,
Dar Parsons, Storm Cosby
in my messy house, Indianapolis Indiana.1994

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 even though the doctors had not told me yet, 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 brushes she used to paint the walls. Guess what? I helped her, and washed the paint off my hands and brushes 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. The question still remains why did my parents not get leukemia and I did when we all had the same amount of exposure.

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.

Heart Stress Test

Elizabeth Munroz at 30-ish

When I was in my thirties, I had my first heart palpitations. I was in my eighth month of pregnancy. Due to heart disease running in my family, I went to the emergency room. There was a great deal of hustle and bustle by those taking care of me. I was hooked up to EKG and then given an IV bolus of Lidocaine. It made me feel really weird and I thought I might die. I said, "Save my baby! Please!" That's all I remember of that episode. It never happened again. I had a perfectly healthy baby and no more problems. Until a few years later. I was not pregnant then.

I went to the emergency room again. This time it was determined I had a blood clot in my leg. I had recently had surgery, so it was clever of the doctors to figure that out. I did not know what the difference was, or why having a blood clot would cause heart palpitations. I had previously had a blood clot after a surgery in the past I now understand that made me more susceptible,

I didn't realize it at the time, but I was drinking a great deal of herbal teas every day, in particular licorice root. Perhaps that was the cause. I look back and realize how lucky I was.. After I stopped messing around with herbal concoctions, the heart palpitations stopped.

The years passed and when I was just past fifty years, I had some scary serious chest pain. I had already had a few years of something similar which turned out to be gallbladder disease and stomach ulcers. So, I didn't think much of the chest pain except to wait it out. When I next visited my doctor, I told her about it, and suggested I might have an ulcer again. I had the requisite tests and I did not have an ulcer. Due to my history, not only of the things I mention above, but a lot more, she sent me to a cardiac clinic at Stanford University. I had a number of standard cardiac tests.

Elizabeth age 50's

Among them was a Cardiac Stress Test. This involves having EKG wires attached to your chest while you walk on a treadmill until your heart rate increases to a certain extent.The treadmill goes faster and faster and also goes unto a tilt to make it feel like you are climbing a hill. At the point where the technician decided I'd had enough, she had me quickly lie down and she did an ultrasound on my heart. It was beating very fast, skipping a bit, and I was out of breath. But, I returned to normal soon enough that I was not bothered. The biggest problem was my arthritis. I could barely walk down the hall and out to my car after that. Stanford is a very big institution! Plus, I had to drive home about sixty miles.

It was determined that "at some time in the past" I had a heart attack. I was incredulous! The doctor explained that it was possible to have a "silent" heart attack. The doctor said he saw scar tissue in my heart. After he retired and I went for a follow up to his replacement, she told me I never had a heart attack. By that time, I didn't care anymore and went on to live my life.

About the age of sixty, I had a severe episode of chest pain with sweating and couldn't catch my breath. I thought, "This is it. This is really it." A visit to the emergency room and admission to the hospital. Dismissal the next day after a local Cardiologist had determined I had not had a heart attack but perhaps some "angina". Therefore I became his patient and saw him every few months for follow up. At one point he ordered a stress test.

I explained what happened the last time I had one, the terrible pain in my joints and the decrease in my ability to walk well afterwards. So, the doctor told me it was okay. People who have arthritis like me can take a different kind of stress test, where a medicine is injected which makes your heart go through the same stress as if you had been walking, running and climbing. So, I went for the test.

It was a big mistake. I didn't mind that my heart sped up. I didn't mind that I got breathless, sweaty and nauseated. But, I did mind, tremendously, that I got the worst pain in my life right there in the middle of my chest. It felt like a semi-truck was driving over me! I could barely speak. The technician was monitoring my blood pressure and telling the doctor how high it was. (Odd that he was present. Isn't it?) He came over and stared at me for a while while checking the print out of the EKG. He told me it was almost over with. It seemed like forever, but apparently it was only 6 minutes. He left after that.

Elizabeth age 60

The technician disconnected everything but kept monitoring my blood pressure. She said it was very high, one of the highest she had ever seen, and she would have to stay with me until it returned to normal. An hour passed by. She told me she had other appointments and they were all on hold but she would have to release me even though my blood pressure was still high. So, I went home and relaxed as she told me to do.

(Note: my blood pressure is normally about 120 over 80 and only rises when I'm in severe pain.)

I found out the name of the medicine that had been injected into me. It is called Adenosine. I have never agreed to take that test again.

I have written about all this because an elderly man I know recently had the same test. I worried about him. He is a previous lung cancer patient and only has one lung. I thought for sure, it would not only be stressful to have that test, but it might put him in the hospital. How could someone at his age and medical condition go through that? I told him of my experience. He reassured me that the doctor had told him it was a simple procedure and he would be able to drive himself home afterwards.

I am stymied. It's true. My friend had no problems with the test at all. I know that the kind of symptoms I had are pretty common. But, not nearly as intense as what I had, especially with the blood pressure being the way it was.

Still, I will never consent to this test again, and I have listed Adenosine in my medical records as a drug I am allergic to.

Does Leukemia Run in Families?

1918
Myron Rockwell Borden
and son Alvin

Last night I had a vivid dream that I was having a discussion with a doctor about my leukemia. He was asking about family history of diseases and conditions. Instead of answering with the usual, Hypertension, stroke, Hereditary Multiple Exostoses (osteochondromas) and my history of the bone cancer, chondrosarcoma, I said, "I have a cousin who also had leukemia.

The dream, as short as it was, awoke me with such a strong impression. It felt like an "ah ha" moment.

Yes, it's true. I do have another family member who had Leukemia. Is it coincidence? Or is there a familial link?

Within the Leukemia support groups I participate, there are quite a few people who have mentioned having other family members with the diagnosis. When I spoke to my doctor about this, he didn't think it was possible.

Of course, I spent way too much time today researching the family line to discover if others had a leukemia history. But, I got waylaid by finding there is a propensity for another kind of issue. I don't need to go into that right now, though.

Doing genealogy research on the internet, trying to connect a family name, and the names of descendant surnames to obituaries that include the word "leukemia" is very intensive.

However, I did happen across an article, Leukemia Predisposition Gene Discovered 

There is also this article:

Shall I copy these articles and give them to my doctor?

I have had my genome looked at by a company called 23andme. And as a matter of fact they apparently are looking for those who have a propensity for leukemia.

Guess what?

According to them, I have a higher chance of having Lymphoma!!! Go figure.

They can only test my maternal heritability so if they find this GATA2 gene in me, it will be from my mother's side.

I'm putting this information on here just in case there is another person related to me that has leukemia. (or chondrosarcoma).

The direct line ancestors of my cousin and I are:

Myron Rockwell Borden born Chatham, Tioga county, Pennsylvania
Alvin Borden
Ansel Borden
Seldon Borden
Samuel Borden
and so on back to the progenitor, Richard.

1960 Alvin, Velva & Lois  Borden

Anyone who does genealogy will know what all that means.

But, my closest concern regarding connection, comes from those descended from Myron, Alvin, Ansel and Seldon.

There are a lot of mother surnames I have left out, and for reasons of privacy I have not named the descendants living today.

Please don't hesitate to contact me, though, if you think you might be related to this line. You can either share in the comments or send me a personal email elizablest at gmail

My Best Friend Forever

Linda while pregnant with Andrea.
 You can see her joyous glow.

My best friend,  Linda Watkins, would have celebrated her 63rd birthday this month. I believe on the 24th. But, she died of cancer close to her birthday in 1982 about the age 33. When we first met in 1974, I had just moved into a small house in El Monte, California. We hit it off right away. She was my neighbor.

Linda has a very great sense of humor. She could always find something funny to joke about, even at the most serious of times. She had such a cheerful disposition and never allowed herself to be depressed or miserable for any length of time. She was also a very strong minded individual and never let anyone push her around. She had a very firm belief system and some of her values were immovable.

If ever too opposites attracted it was my friend Linda and I.

She had a darling little baby girl, named Andrea, who must be in her thirties now, or perhaps forty. Linda’s mother Millie/Tillie called on the phone every day, and asked, “how’s my baby?”. She didn’t mean Linda. She meant Andrea. It was funny at first, but then one day Linda, feeling a little possessive, responded with, “She’s not YOUR baby, she’s mine! I am your baby, and I am doing fine!”  The reason I refer to Mrs. Duran as Millie/Tillie is because her name was Mildred and went by Millie at one time in her life. But, before Linda introduced us, she insisted that I call her Tillie. I never learned why. Perhaps it was a private joke between mother and daughter?

Look at the joy on those faces!

Linda was approximately my height, 5‘ 2“. When we first met, we were the same weight, but from that point on she lost weight and I gained. Sometimes it was the other way around, a running joke with us. Still both of us were more plump than we thought we should be. I look back and see we wasted a lot of time worrying about our figures.  She was of Mexican-American ancestry, though if anyone ever asked if she was Mexican, she firmly replied, “I’m American!”  With the Watkins last name, and no accent, no one dared to ask further.

Linda had sparkling brown eyes that showed her inner attitude that life was fun. She had naturally tan skin, but every summer we laid out under the sun to get more tan! I always ended up with sunburn. Her complexion was clear. She had perfectly arched eyebrows and a lovely face that most women would envy. She had what my mother called, “beauty marks”.  Linda called them moles. But, they were not moles in my opinion. They were flat. They were beauty marks. She didn't like them much and always said someday she wanted them removed. Linda had naturally curly, thick black hair. She always made an effort with her appearance. Where I would toss on a pair of jeans and t-shirt. She might do the same, but she accessorized. She took the time and trouble to put on her makeup and wear nice shoes. She carried herself better than I. I’m somewhat of a slouch. Even when she was casual, she still appeared neat and fashionable. And I admired her for that.

Even though we were best friends, I didn't know she had cancer until just a few weeks before she died.  I remember a year before, she hinted around, but I didn't get it. She asked some medical questions, which now I understand were directly related to her symptoms.

Was keeping her secret part of her keeping a positive attitude? Did she not want to share her situation with me? Truly, I was very hurt, and tremendously suffered grief when she died. Would it have been different, if we had shared the burden? If I could have supported her through her ordeal?

I look at this picture now. Linda and her two daughters, Andrea and Marcee. I can see it on her face. She already knew she had cancer at that time. I'm sure of it. Her smile is not entirely lit up the way it was before.

Linda didn't have Leukemia like I have now.. Those couple weeks before she died, when she did share with me, she waffled about what her diagnosis was. There was a terrible new cancer that no one had ever heard of at the time that was killing gay men by the hundreds. She referred to it often, but we laughed about it. After all she was not a gay man. Is it possible she was one of the first women to have HIV-AIDS? I used to think that maybe it was her moles. I knew there is a kind of cancer a woman can have where a mole is in the womb while she is pregnant. But, I have since learned that a living baby is not produced, and Linda had Marcee just two years before she died. I suppose I will never know. I guess it doesn't matter what kind of cancer it was. She's gone and there is still a great big hole in my heart that my best friend used to fill with laughter.

PLEASE! If you are going through diagnosis of cancer of any sort, find a way to share with your loved ones what is going on with you. Yes, it might upset them. Yes, they might cry. Yes, they might go into denial. We all do that sometimes. But, give them a chance to be with you on your cancer journey. PLEASE don't go it alone.

Elusive Happiness

Photo by Elizabeth Munroz

What ever happened to happily ever after? That was all hype, like Santa Claus, Leprechauns, the Tooth Fairy, and all that other bunch of lies that were perpetrated upon us as kids. There ought to be a Law!!!

Really... I think happiness is what we make it.

As the Buddhists say, one of the first truths is that we all have suffering, none can escape it. Once that sinks in, we can work from it, or around it or with it, or whatever. The Buddhists also say that the one thing in life that is constant is change.

My life often seemed as though it had all been one big dark pit of suffering. Truly, a lot of it I brought on myself by my attitude towards things. At the time I didn't know any better. How could I cope if no one I knew had the skills to be an example to me? I guess I could say I came from a dysfunctional family. But, how were they to know, either, if they were brought up when times were so challenging all you could think about was where the next meal would come from.

The person I am today is not who I once was. Somewhere along the way I learned that happiness is not meant to be a permanent condition. What a shock when I found that out! I thought I had been missing out on something everyone else had.

I think it's a good thing we don't have an abundance of joy. We would get bored with it. Don't you think? In order to appreciate happiness, thrill to it, we must be deprived of it, before it fills us to overflowing. (Shades of "My Cup Runneth Over").

Photo Art by Elizabeth Munroz

It's funny how the littlest things make me happy now, that I never even considered worthy of the appellation. Simply watching what's going on around me without judging it, for example. When I'm down, I might just make myself smile. At first, it makes me feel a fake happiness that catches on and becomes real the more I do it. Perhaps the body, the mind, the spirit needs reminding? Sounds crazy I know, but I am probably somewhat that, too. Psychiatrists say that everyone has a bit of neurosis. Yes?

Then, of course, there's Chocolate Happiness!  'Nuf said on that one.

I'm of a believer in the concept of destiny. Not that we are pawns of it, but that we have opportunity to enhance life and challenge us to become the best we can be. Naturally we do not live the perfect path, but some acceptance of the painful things sure goes a long way for making life easier.

When I look back, I can see that so many things I previously considered disastrous in my life were actually good things. While I was going through challenges and difficulties, even of the worst kind, I clung to the "woe is me" sentiment. I sometimes felt victimized and helpless. I tolerated those situations way too long before setting myself free. Often this occurred in a very traumatic way, as I went through it all in a most negative attitude. "Oh, poor me. Life is hard. Other people have it so easy. No wonder they are happy." Life might have been easier had I not looked at life from such a viewpoint.

Photo by Elizabeth Munroz

Yet, today, looking at my experiences, I do not regret a single moment of it. Lessons were to be learned. Understanding needed to be gained. Everyone goes through it. If I had clung to what I thought was going to bring me happiness, I never would have been able to face today. It is all the more precious!

All this brings me deep in my soul, healing and satisfaction beyond mere happiness. I find that I can accept the things that happen in my life. I am aware of the attitudes I had about them in the past. I feel it brings me a compassionate heart that opens to heartfelt pain and full love for others I have never met. See what I mean?

I had cancer, and many disfiguring surgeries. I had marriages that failed. Children lost to me. Friends who couldn't deal with illness. I suffered and had such a negative attitude about it for years. Yet, it has all made me the person I am today. Way stronger of an individual than I ever could have dreamed of being without it. Dealing with Leukemia, even the so-called easy kind is my permanent future. I'm not pretending to be a positive thinker. I just take one day at a time, and thank science for having a chemo pill I can pop every day so that my cancer is controlled. Sure, there are side effects, and I don't always feel well, going to the doctor is a regular part of my life. It is what it is. Some days are worse than others. But, I make the best of it.

I know not everyone looks at things this way. But this is my take on it, and it makes me happy.

Hanging in There

Sometimes life gives you what you think is more than you can handle.
But, try running away from it and it just follows you.
Hide from it and it will find you.

What we are supposed to face, will face us off, unless we will turn to it, embrace it and heal ourselves of our fear and ignorance.

And, of course, it will come back just to test you again, later to remind you to "Hang in There".

~~~ Elizabeth Munroz

Beaten Down By Medical Diagnoses?

I visited my Rhematologist yesterday. We had a very interesting conversation revolving around the fact that I seem to be "blessed" with a myriad of medical diagnoses. And how interesting it is that others seem to not have medical problems at all. The reality for me is that I'd rather have what I have regardless of the seriousness of it, because I "know the enemy" and have embraced it. This doesn't mean I like having Leukemia or any other medical issues I face. It means I've accept that these are that which I carry around with me day to day. I could carry these burdens and look at them as a horrible threatening weight bearing down on my shoulders. Or I could educate myself carefully about each and every one so that I have a clearer picture of what I am dealing with. Truly this lightens the load.

Near the bridge in a beautiful small town in Vermont. I don't remember the name.

If I look at a diagnosis as an entitity in it's own being, so to speak, I can respect it, respect the possible power it could have over my life and respect that it needs addressing instead of ignoring and letting it weaken my resolve to have a good life.

First and foremost, if you are going to respect your condition, you have to know more than the name. Do you know the name: Do you know the other possible names? Do you know the history of the disease? The way it can affect people? Knowledge is power. Knowing all aspects of your diagnosis, even the scary parts that everyone would rather not think about, is of prime importance. If you know that your condition could lead to death, then keeping yourself in ignorance about the symptoms that could lead up to an untimely death would end in a shock and surprise. Denying the possibility and pretending that keeping a positive mind set is fine, But it does not prepare you to take care of yourself when things get worse.

Educate yourself. Know who the enemy is. Make him your friend. Learn everything you can to make yourself familiar with how your body is affected by the condition and keep watch over yourself. Take care of your health as if you were taking care of your most precious infant.

Knowlege is Power. Empower Yourself!

Philadelphia Positive

Today is the day.

Today is my "anniversary" or "birthday" if you will. Cancerversary?

Today marks one year exactly from the day I was diagnosed with Chronic Myelogenous Leukemia. (CML)

Today is a day to celebrate my one year mark of survival.

Today is also International CML Awareness Day.

Today... 9-22 is significant because it is the chromosomes 9 and 22 which mutate and cause CML. This is called a Philadelphia positive chromosome.

Today is a good day because I'm still here and I'm happy there is a chemo pill I take every day that keeps my Leukemia chronic and not aggressive.

I wish I wasn't alone today. I wish there were others with me. I wish someone could celebrate this special "Life Day" with me.

It's Only Fat!

Test:	CT Chest Abdomen Pelvis With Contrast
Resulted Date:	9/19/2012	Status:	Final Result

REASON FOR EXAM: Left flank mass, history of CML and right pelvic chondrosarcoma
After the administration of intravenous and oral contrast, spiral CT of the
chest, abdomen and pelvis was performed. Delayed images of the abdomen and
pelvis were also obtained. Axial plane images are reviewed in soft tissue, lung
and bone windows on computer workstation.  100 cc Isovue-370
Dose parameters for this examination:
number of series: 2
maximal CTDI 14.3 mGy
total DLP 1606.9 mGy-cm.
COMPARISON: 10/05/2011
FINDINGS: A skin marker was placed over the mass on the left flank. The mass
corresponds to a 4.2 x 3.9 x 9.6 cm fat density mass with a thin smooth
capsule. The lumen of the mass is homogeneous fat density. No enhancing
component is present. Similar mass was present on the previous study dated
10/05/2011.
Thoracic inlet is normal. No axillary lymphadenopathy.
Mediastinal structures are normal. Densely calcified mass in the right lower
lobe is stable. The lungs are otherwise clear. No infiltrate or pleural
effusion.
Air in the left hepatic duct is again noted. There is a small amount of air in
the common bile duct. Gallbladder is surgically absent. The pancreas, spleen,
adrenal glands and abdominal aorta are unremarkable. Vascular calcifications
are noted.
Small intestine and colon are within normal limits.
Previously identified surgical changes on the right side of the pelvis are
again noted. The right pubis and most of the right ischium have been removed
degenerative changes in the SI joints and lower lumbar spine are noted. No
lymphadenopathy. No inflammation or ascites.  Impression:   1. The left flank mass is most consistent with extra muscular lipoma.  2. Surgical changes in the pelvis  3. Old granulomatous disease

Even Roses Have Bad Days

A visit to the clinic today for a CT scan, with contrast. No food after 1pm. Start drinking contrast fluid at 2:30 about ten ounces every twenty minutes until 4:30. I was supposed to be called in for the scan at that time. By 5pm I started getting sharp stomach pains and made a run for the bathroom down the hall. I made it but not  all the way. Just then a woman came in. (poor thing!) I told her I was sick (surely it was obvious) and could she get my husband from the radiology waiting room. She ran out (smart woman) and didn't return.

I hate losing control like that. Being sick in public is humiliating and de-humanizing. I had to ask for hospital gowns to wear. Momentarily, I thought to go home. That would have been the sensible thing to do. Right? Not! There's no way I would go home after ingesting that contrast stuff and then have to come back to do it all over again!!! No thank you! I stayed there and dealt with the situation. I've been through worse.

Once my sweet man helped me clean up and got the gowns for me, he escorted me back to the radiology dept. I spoke to one of the techs, told her I was ill and she got me in to lie down quickly, covered me with a heated blanket and I was soon feeling much better. And we got on with doing the scan. Unfortunately, I don't have any nice puffy veins left so they have to hunt one down. The tech went and got another person to come and insert the IV on the side of my wrist. He really did a good job of it. Didn't hurt all that much, and I have no bruise!!!! Woo Hoo!

I'm sure the average reader would not care to be looking at this post. But, this is what my blog is about. It includes the thorns and roses of everyday life whilst managing one's health issues. So things are not always going to be pleasant. Life sucks sometimes. But if you hang on long enough you get through it, a little demoralized occasionally, but then you go on from there.

I requested a copy of my scan and recieved it before I left. Oh... why did I have the scan? I have a soft lump in my left flank at waist level. It's about the size of a small boiled egg, and feels like it too.

A Little Scare

After the bone marrow biopsy the other day, the nurse placed a large and bulky pressure type bandage upon the spot where the doctor had inserted his instruments.(resembling the picture below).


I didn't mind it at first as my behind
was so numb, I didn't even notice it. That night I slept reasonably comfortable as I had taken pain medicine figuring there would be residual pain when the Novocaine wore off.

I kept the bandage on all day yesterday. But today it was getting annoying. I either hadn't paid attention or no one said anything about when to remove it.

Or... wait... perhaps the instructions of when to move it were on that paper I signed without wearing my glasses! Yes, I do believe that's it. What a trusting patient I am... or perhaps clueless?

scattered-brain
Digital Art by Elizabeth Munroz

I scare myself when I think of how irresponsible that was of me!

Needless to say, the bandage was bothering me. It was quite bulky and the tape was pulling and stretching my skin every time I moved. So, I fussed with it and pulled it off.

Continuing to apply pressure I went to the nearest mirror and turned to look at my behind while I lowered the bandage. No sign of blood! Phew!

I kept looking at it for a minute to see if I was mistaken, but there was no sign. I went back to the part of the gauze that had fallen off in order to take another look at the piece that I thought had looked bloody. Yes, it still had a little glob of something on it. I realized it was probably gooey Betadine ointment and not blood at all.

I relaxed and  removed the rest of the bandage and it's been fine since then.

I realize, in retrospect, I need to be more attentive and sensible about these things and ask for help when I need it. I could have asked someone to read the paper to me that I signed without my glasses. Or better yet, I could have made the effort to dig through my purse and find said glasses.

I also realize that because I took an Ativan before the procedure, (just in case this time would not be so easy) that is why I had the careless attitude.

How cavalier I was in signing those papers. What if there was something serious I missed by not reading them? This circumstance was nothing. But it gave me pause to re-prioritize.

Next time I will ask my sweetheart, who went with me to hold my hand, to help me be more vigilant of my carelessness when I'm drugged like that. I seldom take the Ativan. It is prescribed for the few times that I get anxiety attacks. Admittedly I was a bit anxious before the procedure and that was also a reason I took it. 

Live and Learn!

Leukemia and Burning Man

Today I read an article by Joslyn Hamilton about why she would never go to Burning Man. I wanted to make a comment but, just like many things, one must sign up in order to respond and I got frustrated with the process. So, since I already had my comment created I am posting it here because of it's relationship to my diagnosis. If you would like to read the post I am referring to, you can find it here:

Why I Will Never Go to Burning Man

(And I would be happy if you want the author or commenters to see this post, you can make my life easier by posting a link to here)

Here it what I wrote in response to Joslyn's article (and some of the early commenters) :


All the points brought up are the same reasons I used to say that I wouldn't want to go to Burning Man... and then some. I'm old (67), poverty stricken, and have Leukemia.

I would like to point out, however, that it's clear a person cannot make a judgement on something about which they do not know. Yes, yes... but here I go anyways....

We presume desert is bad, camping is yucky, bathroom facilities are limited, etc. etc. all based upon limited sources of info. Ever since my son first started to go to Burning Man, being the nosy Mom I am, I have investigated and formed many opinions about the event.

It's HOT
It's DUSTY
It's NOISY
It's CROWDED
It's WEIRD (okay, wait... I like weird)
It's DIRTY
People DIE there!

Yup! All of those things, and more.

As the years have gone by and I have learned of the many options, I've come to the conclusion that even for me, Burning Man might be an "experience". What my take on it will be... I don't know.

It's like trying some rare fruit or vegetable for the first time. You don't know until you taste it! Without really investigating beyond the barriers one has created, one cannot know the flavor of the place.

A few things I've learned over the years of my son's "sabbaticals off the grid":

You can take your own bathroom type facilities with you.
You can take your own "hotel" with you... vis a vis RV.
You can take your own cuisine with you.
If you are used to others providing all that stuff for you and you can afford it, bring your staff along and you will have your daily needs met.
You don't have to go hang out in the crowds.
There is plenty of room to be by yourself. They playa is BIG!
There is even plenty of quiet space if you don't wish to be bombarded with music. The playa is BIG!
You don't have to take drugs or barter.
You don't have to convert or have a spiritual experience. The ones who are fanatical about it are just like the fringes of other belief systems in "regular" society.
If you behave yourself and live wisely, your chances of dying there are less than at home. Emergency medical care is available.
Like any vacation experience you will come back with some new impressions in your memory banks.
Your take on it will be based upon your own personal conceptions. You can enjoy yourself or not. It's your choice.

Let me qualify all those statements with the fact that I have never been to Burning Man, so I really don't know exactly what it is like. So, my comments about it are just about as valid as those of  Joslyn Hamilton's. Though, I believe we are both entitled to our beliefs.

My mind is now changed enough that it's on my Bucket List. In fact, it's just about the only thing on my list.

If they had a "Make a Wish" foundation for adults with cancer, I would sign up and go to Burning Man with all the necessary accoutrements to make my stay there enjoyable.

Enjoying myself is a choice I will make when I get there. I can always leave if I want to.

One last thing. Without understanding the cultural history of burning an effigy in a tribal situation, one might not "get" why burning the man is significant.

Second Bone Marrow Biopsy

Bone marrow biopsy went like a charm. Even the novacaine didn't bother me. The Oncologist shoots some of it into the periosteum as well as surrounding tissue. Once I'm numb he goes in with his "drill" to suck out a piece of bone. Another part of the procedure is to suck out some "baby" blood. That which is produced in the marrow before it goes out into the bloodstream.

He got the blood, including a blood clot (don't know if that's important) but it took forever to twist in there and get the bone chunk he wanted. The only thing I felt was a mild shaking of the table. Or was that me? 

I asked my doctor if next time he does this, we can videotape. I see so many youtube videos where people are in terrible pain. I want folks to know there are doctors out there who can do it much more gently, and in my case... painless!

~~~~~~~~~~~~~~~~~~~~
Note: both photos are from the internet and not my own.

Leukemia and Kittens

I'm hanging in here okay. One day I'm fine. The next day I'm sick. Though, I find that I'm more fine than sick, so I like that.

I've been able to dig in the garden, pull weeds and plant things a bit. But, not too much. Sometimes I'd like to just spend a whole day gardening like I used to. I push myself. I feel so happy to be able to garden that I forget myself and go beyond a reasonable time! Then, I'm exhausted and suddenly have to go inside, leaving my tools out on the ground. When it's like that, the only answer is to lie down.

I have two new kittens. Did you see their pix? That makes a total of six. I now have the "legal limit" for Santa Cruz County. Probably a good thing, otherwise I would be a Cat Lady.

Oops! I guess I'm already a Cat Lady. I just didn't realize it. Six cats! What am I thinking? I guess if I go for the seventh cat, THEN I'll be a Crazy Cat Lady. Just one more cat is all it takes!

Note: I'm sure in the background just beyond the right corner of the rocking chair you can see the bumper sticker that says, "Mystery Spot". Wondering what that is? A very interesting place here in Santa Cruz County. Check it out.