Saturday

Ongoing Fatigue, Exhaustion and Malaise with Leukemia and Sprycel

I've written about the fatigue before. It just seems never-ending. I approached my oncologist about this issue, but she denied it had anything to do with my leukemia, since it is technically "in remission".

My sister and I having breakfast together.
I was too tired to eat.
After many months (over a year) of going off various medications I had been taking to test the theory that it must be one of them that was causing my fatigue, I proved to myself that they were not the cause. After joining an online support group for people with CML located in Facebook (great group of wonderful people by the way), I learned that I am not the only one with this issue and in fact, like the drug company representative I spoke with previously, it is a common side effect of not only Sprycel, but also, Gleevec and Tasigna.

So, first thing I did was to find myself another oncologist who was not associated with the clinic where I had seen the two previous ones. She is local and was accommodating in discussing with me my desire to go off Sprycel. We made an agreement that I would go off slowly and see if it made any difference. If my fatigue level decreases, I might decide to stay on it. But, I know there are quite a few people who haven't taken any TKI's for years and their CML has not returned.

After appropriate blood test results came in satisfactory for the doctor, she lowered my dosage from 100 mg. Sprycel daily, down to 70 mg. I've now been taking that amount for about a month. Truly, so far, I have not noticed much difference.

When I say fatigue, I'm not just talking about being tired. The way I experience is is like when you have the flu but you have to get up and go to work or school or take care of the kids anyway. You feel like hell, you are dragging yourself as though you have a 50 pound weight on your back and you feel like you haven't slept in days. This is compounded by the fact that I easily get nauseated. Not vomiting nauseated, but green around the gills.


It feels like if I don't lie down "THIS MINUTE" I will faint.

And that is exactly what I do. I go lie down. After a while I might feel a little better and get up again. But, continue to drag through the day. This is the quality of my life presently.

Anybody who says that CML is the "Lucky, Easy" cancer needs to be sleep deprived and given the flu bug, then forced to walk five miles in downtown's busiest time of day while the weather is miserable!!!

Monday

Sprycel and Fatigue

Every month the drug company calls me on the phone.
Voice: "It's time to renew your Sprycel. Would you like to do that?" and I tell them yes.

Voice: "Do you have any changes in symptoms to report?"

Me: "Yes... I am soooo exhausted and fatigued!!!!"

Voice: "Okay. I will note that. Would you like to speak to the pharmacist?"

Me: "Sure... what the heck..."

Sometimes all I can do is rest.
Pretty Kitty is my girl Queen Bambi

The pharmacist gets on the phone. I tell him my symptoms. We discuss red blood cells which are a little low on me, but it doesn't quite add up to anything serious. Because other factors are not off.

Then he says: "Ten to twenty-five percent of all patients taking Sprycel report the same symptoms. That is considered to be a significant percentage and is therefore a side effect to watch for."

The oncologist I have been seeing categorically denies that my fatigue has anything to do with the Sprycel. It's pretty sad that she doesn't know that the company who makes Sprycel considers it to be a normally expected side effect.

I have already made a second opinion appointment with a new oncologist not connected to the one I have been seeing. I will see him June 17.

Tuesday

Coming Out of the Closet

Saw my oncologist yesterday for a regular follow up appt. Everything is "normal" (she says) but I dont feel well. She thinks it has nothing to do with CML or Sprycel. During the appointment I asked her a question to which the answer scared me.

There's a well known man, Actor, Ralph Peduto, in my area who died 12 days after diagnosis. TWELVE DAYS! 

I asked my doctor how that could be. Didn't he have any symptoms? Was he seeing a doctor who just missed the signs? Or, was treating him for something else? How does one's bone marrow go so crazy in just a few days that one can suddenly just out and out die?

She was sort of nonchalant about it. She said, "Oh, yes... that can happen. A patient can go along fine and then, for reasons we don't know, things can get quickly out of hand like that."

Until then I felt like my diagnosis was unreal, and no big deal. (denial?) Now, I'm worried. It's like having a bad guy hiding in your closet that you know is there, but who promises to never come out, but you can't trust him and can't do anything about him.

Ralph Peduto's Filmography

Saturday

How did I get cancer?

I wrote this article for my chondrosarcoma support group and I've decided to post it here as well, even though this is my leukemia journal. Some of the same things apply.

I've often been told, "Elizabeth, I just don't understand how I got cancer! I've lived a clean life, no drugs, no smoking, healthy diet all my life. I've stay away from sugar and eat all natural. I'm not lazy. I exercise, and work out regularly. I keep my stress to a minimum and I have always been a positive thinker. There is no cancer in my family! How did I get this?"

I just have to say there are a lot of mistaken ideas about what causes cancer. Finding out why you got it probably won't be sufficient evidence to give you peace of mind. I have spent the majority of my life seeking the answers. I'm fairly sure a combination of things that might have contributed to my getting chondrosarcoma or leukemia, but they are the same things that others in my life experience every and they did NOT get chondrosarcoma. There's some information that we still don't know. 

When you ask your oncologist what causes my cancer, the usual answer is, "We don't know for sure." I've done a lot of research and have found some possible answers, some articles that suggest, or hypothesize the cause(s). 

What I have learned, is that for some cancers there are obvious answers. The following is NOT to suggest what is the cause for chondrosarcoma or leukemia. But, to answer some questions as to why there is so much controversy regarding what causes any cancers. For those who are interested, it may help to give you an idea of why it is not easy to pinpoint exactly. From all the recent research I've been reading, I doubt it is just one thing only, but a combination. (I'll write about that another time.) 

In the meantime, for the curious here's a few things to consider:

Do certain types of cancer have a hereditary component? Yes. But not chondrosarcoma. Do not confuse what I have said about people with certain pre-existing genetically inherited conditions having a bigger chance of getting chondrosarcoma than others, though. It's not the same thing.


What about exposure to dangerous chemicals or other known toxic materials proven to be carcinogens? I recall my doctor "suggesting" that my exposure to Love Canal as a child, "might" have had something to do with it. But, search as I might, I've found little evidence to prove it. Though, there's a lot of evidence for other kinds of cancer including leukemia. That being said, it doesn't mean it can't be proven in the future. 


In relationship to diet, here's a scientific PDF article you can print out and read at your leisure discussing carcinogens in certain foods. Are you ready to give up your favorites in the hopes it would prevent recurrence? Not sure if that's a reasonable hypothesis. So many members have come and gone in the group over the years who have changed their diets considerably and not be able to prevent recurrence or metastasis. Sorry, I don't wish to be negative. By the same token, there are some people who have changed their diet and are still here. Still, I am of the opinion that having a more carefully chosen intake of nutrition definitely improves one's all around health and sense of well-being. But if eating only certain foods was the cure for cancer, it would be obvious. There wouldn't be those who have said to me that first statement above. 


One thing that we don't think of as a possible cause for cancer is a virus. In fact the first virus known to cause a cancer was the Rous Sarcoma Virus. We all know that HIV is caused by a virus. Don't we? Cats get leukemia from a virus. Interestingly, only one form of human leukemia has been proven to be caused by a virus.


Some bacterial infections can cause certain cancers. Believe me... I get paranoid just thinking about this aspect. We all are exposed to one of the most common ones and carry it around in our guts most of the time! This is the abstract, but you can get the full PDF free. See the link on the page. 


So, here is one I highly suspect in relationship to chondrosarcoma. The reason is that it is positively known to destroy cartilage cells. Inflammation is a word we think little about. But, it is known to be a powerful ally as well as enemy. Inflammation helps our body to heal after surgery. However, it is one of the causes of post surgical and chronic pain. This disturbs me. If we don't want cancer to return and we are in a state of inflammation, how can we stop it? And would doing so actually prevent a cancer recurrence? (And would this idea apply at all?)

Do you really know what is the definition of "inflammation"?


How does inflammation contribute to cancer?

An easy to read and well written article:


One of the most common erroneous beliefs is that we get (all) cancers because of faulty immune systems. I'm not saying immunity has nothing to do with it. Just that it is not the only cause of cancers, as you have already seen. Just the same, I think it is important to understand how immunity and cancer is related. Usually it is the chemo treatment that decimates the immune system.


This is not the end of this. I will add more later. We still haven't looked at gene mutations.

Saturday

Gratitude for Two Years of Living

It's been two years since I was told I have leukemia... specifically the Chronic Myelogenous type. If I had been diagnosed with CML before Gleevec came into existence (about twelve years ago) my average life expectancy while living with and being treated by the methods used for CML would have been about six years.

It's been so effective that people are living much longer than six years. And, in fact, dying of other conditions. Because CML usually affects older people, one could die of heart disease or stroke, for example. But, I wonder... what about those who are diagnosed younger? Do they get to go on another forty or fifty years without the leukemia taking over? Will the medication continue to work for that amount of time? I guess that remains to be seen.

 To clarify matters, I am not taking Gleevec for my CML. I am taking Sprycel, otherwise known as Dasatinib, which is sort of like the grandchild of Gleevec. In other words, more advanced.

I'm a little bit confused about when Dasatinib was approved for CML as the first drug to be issued to a newly diagnosed CML patient. I find evidence that it was approved only under certain circumstances, such as for a patient who has already tried Gleevec and another related drug called Tasigna.

Within a couple months of starting Sprycel, my leukemia was in remission and so far has stayed that way. Now, that might make it seem like I no longer have leukemia, but that is not exactly the case. It's sort of like saying that a person with a diagnosis of diabetes who has great control of it is in remission, but not cured. Do you see what I mean? So, today I contemplate the fact that I have been given the gift of life for this last two years. Thank you to the scientists who did diligent research in order to create Sprycel. And a great THANK YOU to all those who funded that research!

I've included these pictures of my cat, Chica who, ironically, died of Feline Leukemia last Tuesday. I wonder if she had been given Sprycel, would she have survived?



The Gift of Sight

It's amazing! I can see close up in my left eye just fine. I can read without straining, a book, kindle, newspaper, computer, instructions on a medicine bottle. I can see to trim my fingernails and toe nails! It's a little bit weird to switch back and forth, but it is way better than how my vision was when I had the cataracts.


Now I understand why my mother got so depressed when her macular degeneration continued to worsen over the years until she lost 85% of her vision. Please note it is not related to cataracts at all. My mother was a smoker for more than forty years, and that highly contributed to her macular degeneration.

I'm so glad that I was able to have the surgery even though I have the leukemia.

Seeing is a wonderful gift!

Monday

Eye Surgery and Leukemia

I was concerned when my Ophthalmologist told me it was time to have my cataracts removed. I totally agreed that my vision had gotten progressively foggy. But, being a Leukemia patient, I thought this might be "Risky". I'm not sure of my logic. Fearful, I guess, that something could go wrong, I supposed. I was also irrationally afraid of "something being put into my eye. Or that people with blood/bone marrow disorders might be more prone to infections or failure of the surgery to go well.

I was reassured by my Oncologist that it would be okay to go through with it. So about a month ago I went through with my first surgery, which was on the right eye. I felt nothing and I remember nothing from the procedure itself. The lens used for replacement of my own is optimal for distance vision. Upon completion and healing from that surgery, my eyesight in that eye is now 20/20. What a difference!

Today, I underwent my second surgery which is in the left eye. This lens is for close up vision at arm's length. I'm home now and wanted to give an idea of what to expect for anyone going through the same. Also, be aware that for the regimen for the several kinds of eye drops you will need to take for the next couple weeks must be followed exactly! My neighbor did not take the instructions seriously and presently has an infection. She is not satisfied with her eyesight at this time either.Do not put your fingers in or near your eyes! You can contaminate your eyes with germs from your fingers.Wash and dry your hands before inserting your eye drops. Dab them with a tissue if need be.

 I have to admit that it gets complicated. Two different eye drops have to be taken four times a day at least five minutes apart. One other eye drop has to be taken three times a day, also with the five minute separation. I've had to make a chart. I've taped the boxes together so they don't get separated and misplaced (learned that lesson early on). And I keep them in a small zippered container in one location so that I can find them when my alarm clock lets me know it's time to take them again. Believe me, I needed someone to help me with this, as the first two days I was pretty foggy minded from the anesthesia.

Can't wait to see the doctor tomorrow first thing for her to take a look and learn what my new vision measures!

Saturday

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!

Thursday

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.


Monday

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

ComponentStandard Range1/16/20122/2/20127/9/20123/1/2013
Total cholesterol289 H274 H249 H192
Triglyceride276 H308 H221 H125
HDL cholesterol474435 L57
LDL Calculated187 H168 H170 H110
VLDL (Calculated)5.0-40.0 mg/dL55 H62 H44 H25
Cholesterol to HDL Ratio6.1 H6.2 H7.1 H3.4

Saturday

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

Friday

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.

Wednesday

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.

Friday

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

Thursday

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


Saturday

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