Haunted Awakener

I find myself within each day swinging from blessed ignorance (my brain has turned itself off), to horror.

I puzzled over the dilemma of being controlled by my emotional instability and how I could live better with the situation.

There's always a choice, I say. Well, maybe not always, but an attempt must be made in order to try to get through things instead of falling through the cracks and losing it entirely. Been there done that too many times already. Psych meds help, but I also have to help myself. I think it's called Rational Emotive Therapy. It's quite helpful.

I had a friend once who had a series of bad dreams that haunted her daily life. She tried everything to stop the problem, from counseling to sleeping pills. But, it wasn't until she realized that the dreams bothered her most after indulging in one of her favorite activities. Or should I say, inactivity. She enjoyed watching horror movies.

Sometimes we don't put two and two together until long after we have failed the math test.

I realize my subconcious is wrangling with the Leukemia diagnosis, of course. My concious mind wants facts, facts, facts. I keep researching, learning what all the medical terminology definitions are, studying like a pre-med student for the final exams. I want satisfaction for my curiosity. I must know the adversary!

Still, the adversary is frightening. I can't turn my back on it. I research late in the evening after I have done all the rest of my daily business.

I sleep okay. It's just waking up to the underlying emotions that gets me down. One might say, "Stop researching". That would make me so anxious, I would be in worse emotional condition.

I have come to the conclusion (Drum Roll) that researching Leukemia information late at night is what's causing the emotional wake up periods.

DUH!

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Photo Art, "Haunted Dreamer" by me, Elizabeth Munroz

They Call Them Risks

Factors that may increase the risk of developing some types of leukemia include:
(from Mayo Clinic site)


Previous cancer treatment. People who've had certain types of chemotherapy and radiation therapy for other cancers have an increased risk of developing certain types of leukemia.

My question is: What are the certain types? Name them! Is Azathiaprine one of them? I took that for a short while to treat a non-cancerous condition I have.

People exposed to very high levels of radiation, such as survivors of a nuclear reactor accident, have an increased risk of developing leukemia.



Oh, dear! What's going to happen to the people of Japan? Katsumi has loved ones there. I have loved ones there. One who is pregnant and living in Tokyo! Can a baby be born with Leukemia?



Genetic diseases. Genetic abnormalities seem to play a role in the development of leukemia. Certain genetic diseases, such as Down syndrome, are associated with increased risk of leukemia.


Certain genetic diseases? Seems like more than one to me. Where's the list? I have a genetic disease called Hereditary Multiple Exostoses. 


People who have been diagnosed with certain blood disorders, such as myelodysplastic syndromes, may have an increased risk of leukemia.


That's a tricky one.


Smoking cigarettes increases the risk of acute myelogenous leukemia. 

Another good reason for people to quit smoking! Did you know there are 599 chemical compounds in cigarettes?

Exposure to certain chemicals, such as benzene — which is found in gasoline and is used by the chemical industry — also is linked to increased risk of some kinds of leukemia.


That's me. Exposed the first fourteen years of my life to the toxic waste of "Love Canal" in Niagara Falls, NY. I thought having the chondrosarcoma bone cancer was a direct result of that (as well as my genetic benign bone tumors). And I was foolish, I guess to think that was the extent of the damage.

Family history of leukemia. If members of your family have been diagnosed with leukemia, your risk of the disease may be increased.


The only relative I know of that had Leukemia was a second cousin who had it in childhood many years ago. She was my mother's brother's grand daughter. That doesn't seem closely related enough.


However, most people with known risk factors don't get leukemia. And many people with leukemia have none of these risk factors.

Leukemia Vaccine?

I took my cat, Ninja, to the vet. He needs a bath, and they do it for a reasonable price. But before they will bathe him, all his vaccinations need to be up to date. This goes for any place I would take him to be bathed. It's not just the vet's office trying to make money off me. They want people to keep their inoculations up to date.

I admit I have been negligent.

I asked what vaccines he needed. There were two. I have already forgotten one of them. The other one stuck in my mind. I knew before that this existed. But, it brings up a real question.

Why do they have a vaccine for Feline Leukemia and not one for human leukemia?

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Something I am learning about CML


Chronic myelogenous leukemia has 3 phases.

As the amount of blast cells increases in the blood and bone marrow, there is less room for healthy white blood cells, red blood cells, and platelets. This may result in infections, anemia, and easy bleeding, as well as bone pain and pain or a feeling of fullness below the ribs on the left side. The number of blast cells in the blood and bone marrow and the severity of symptoms determine the phase of the disease.

Chronic phase

In chronic phase CML, fewer than 10% of the cells in the blood and bone marrow are blast cells.

Accelerated phase

In accelerated phase CML, 10% to 19% of the cells in the blood and bone marrow are blast cells.

Blastic phase

In blastic phase CML, 20% or more of the cells in the blood or bone marrow are blast cells. When tiredness, fever, and an enlarged spleen occur during the blastic phase, it is called blast crisis.

Above information is from http://www.cancer.gov

Aftereffects Zero

Aftereffects of the oral surgery to remove the wisdom tooth are negligible. The only pain I have is from my arthritis!

I forgot to mention yesterday how the dentist/doctor questioned me about my blood. I gave him a paper with everything written down. The high white blood counts, etc. He wasn't interested in that. He was interested in my platelets, which in some Leukemia patients are so few that they become heavy bleeders. I told him they were normal. But, since I hadn't written the number down on the paper I had the other blood counts on, he wasn't very happy. I assured him that I've been diagnosed early and my platelets are fine, in fact a little above normal.

With just a little bit too much challenge in his voice he said, "How do you know? Are you a nurse?"

When I responded, "No!" he briskly walked out of the room telling his assistant to call my oncologist's office to get the numbers on my platelets.

Maybe I should have lied and told him yes I was a nurse. I wonder if he would have accepted that.

I can respect that he has to be sure that working on a patient in my situation he has all the information to perform a safe procedure, for me as well as for him. I just wish he could have been a little less brusque and belittling. I would have been nice had there been equal respect reciprocating. I guess, like the song says, "Nobody ever promised you a rose garden."

However, Today I got to see a most beautiful rose at M.A.s house. It smells as lovely as it looks! Life is sweet!

Farewell to Wisdom

Arrived at the oral surgeon's office bright (too bright, I'd forgotten sunglasses) and early, too early! I'm a night owl! But, did okay until questions were asked. My still asleep brain would not cooperate. I haven't the slightest idea where one of my medical cards is located, for example. I don't know how to explain what is wrong with my wisdom tooth.

Still, the good news is that the procedure only cost a little over $500, a third of which is covered.

I've already had more than my share of illness and surgeries in my life. So when assistants were getting me ready... that means I lie down and let them do thngs to me... I start wanting to have some control over what happens.

"Could you please use a larger cuff for my blood pressure? That one is so painful, and keeps pumping up because it's not getting a reading. I know the larger size will work on one try."

Rolled eyes to the ceiling was the hint of response, but respect for my request was the result. It pays to ask and inform.

"Do you have to put the IV in that arm? It's been through so much and now no one can ever find a vein there. The one on the other side is much better, on the back of my hand is best."

The assistant walks out and brings in the IV-needle-inducer expert who handles my arm roughly and pulls the stretchy band tightly, removing it with a snap, and tries a different location down my "bad" arm.

"Can't you turn your elbow inward further than that?" She is looking for something underneath.

"No, actually I can't. I have bone tumors that prevent that kind of flexibility."

(Note: It's a hereditary benign condition.)

She walks out of the room. In the meantime the other assistant is placing a mask over my nose.

"What is that for?"

"It's so you can breathe in the Nitrous Oxide."

"Um... Nitrous Oxide? Is that also known as Laughing Gas? Are we not going to do the full sedation?"

"Yes, but we would like you to be relaxed by the Nitrous Oxide before we insert the IV."

"I really wish you could put the IV in my good arm."

I'm thinking that I will wake up with bruises all over my "bad" arm where they attempted to dig for a fat vein. "I've had so many surgeries in the past. Those veins are really shot."

The first assistant returns. "Doctor said we can use your other arm. Where would you like to have it done?

The Laughing Gas does not make me laugh, but it does inhibit me from speaking clearly. I point to the first nicely plump vein on the back of my hand beneath my index finger. It's the one that always works. In goes the needle.

Doctor walks in. "Let's begin."

There is a burn as the medicine is going in. I hear a squeak. It's me. Someone says. It's just the Valium. It will stop burning soon. I close my eyes.

Later, someone is saying, "Open your eyes. Come on. Wake up!"

Do I open my eyes? I can't remember. There were several episodes of this. For heaven's sake! They must have really knocked me for a loop. I cannot arouse myself.

Finally Kats is by my side as I wobble to the car, and we leave to come home.  He tells me later, that on the way home he stopped to feel my pulse and see if he could get me to respond. I did, but I don't remember this. At home he helps me to bed and I had a nice long rest.

It's now ten hours later. I can't complain. I have no pain. I'm drinking water, eating jello (which I like) and ready to watch the evening news.

Photo Art by me, Elizabeth Munroz

Employment Enjoyment

My little brother sat at the side of the road until some city folks stopped by. He had some veggies from our garden for sale. Roger was a great business man even then. He sold a whole bushel basket of squash for three times the going rate! The customers drove away quite happy because these were home grown, and sold by a most informative little boy.

Some decades later, aside from holding down a full time job, Roger and his wife sold items at swap meets and flea markets in order to make ends meet. Another decade later, he was so successful that he was able to give up his job and start his own business selling electronics from his store and which still included traveling to various events, setting up tables and selling to the public.

I often accompanied him working for a day's worth of pay, and the enjoyment of being with my brother when his business brought him to my area. I first worked with him in the mid 1970's. The night before, we would pack up his van, awaken before dawn, go to the even location, unload the van, set up tables, display merchandise and sell to customers, some which became long time regulars. Often Roger had others working for as his business grew.

Within the last decade, as my health issues became more of a burden, we adjusted the type of work I could do for him. No more loading or unloading heavy boxes. No more putting up the tables. Eventually, just putting merchandise out, organizing displays and pricing items. Then, later, simply being cashier. The last few times my brother was in my area, all I could do was drive to his location and hang out with him a couple hours, instead of all day, and sometimes answering questions from customers. It was great to be with my bro and catch up on family matters. Most recently, all I could do was meet him for lunch or dinner at a convenient spot on his way home. My energy and general well being was so low.

Today, Roger and his wife were at Pacificon, less than a two hour drive from me. It's been more than a year since we have seen each other. So, Kats and I drove out to see him. We arrived before set up time, which was before three in the afternoon this time. Thank heavens! There were all the familiar tables loaded with electronic merchandise still needing some organization for display.

It was like getting back on a bicycle after not having ridden one for years. It came naturally to me to help out. But, before you know it, I had to go sit down and just watch. As what usually happens in my everyday life, I got my second wind, and began to help again.

And there was that redundant fatigue dogging me. Repeatedly taking a break was necessary. I hope when I get on chemo, and become stabilized, I will get some of that energy back!

It was wonderful to hang out with my little brother and his wife. And great to socialize with customers, some of them with familiar faces and joyful greetings.

Check out my brother's business here!

Wounds

I have lived through things I would never have thought I was capable of, and I’m much less afraid than I used to be.

The process of wounding awakens us to our strength.

It shuffles our values, and the top priority is never what you thought it would be.

It’s never about perfection, or power.

It always turns out to be about LOVE.

Knowing ourselves to be vulnerable and our time here to be limited,

we’re freed to live more passionately, and fully than we have before,

to discover what’s worth fighting for and who we are.

Real strength is buried at the depths of any wound we have survived.

~author unknown

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Art by Elizabeth Munroz
"Wound Healing"

Me and My Comforter

Not feeling very well today. Wasted. Get up to do something and in a short time I am forced to go lie down. Made up my mind I was going to get things done anyway. Not a good idea. Good thing my friend was here helping with the laundry! So I rested with a cold wet wash cloth on my head while she put the folded laundry away.

Mom, used to do that... give me a cold wet wash cloth. It was always comforting. Another thing that is comforting when all I can do is lay about, is Buffy, da Bampire Flayer. She's comforting me in the picture I took by holding the camera above us and guessing which direction to aim the camera. After about a dozen takes, I finally got this one.

She's better than an old wet wash cloth any day of the week!!!

This is no laughing matter!

My jaw aches, but not from having had a tooth extracted. No. It aches from all the injections of novacaine it recieved that did not suffice to permit the dentist to do his job. As he stared at the monitor he mumbled to his assistant. "Who made the appointment? Didn't they check this? Look how tilted this tooth is."

I asked what he said. At least he was honest and didn't pretend. He told me it concerned him that the numbing medicine wasn't working enough for me. It concerned him that the wisdom tooth was not a straight up pull. It lies somewhat sideways. The roots are curled and stuck into the bone of my jaw. It requires to be surgically removed. He can't do the job. I have to be referred to an oral surgeon.

Did you know that when a dentist gives you novocaine to numb your mouth, he also gives you something else, I forget what it is called, to keep you from bleeding. It's like an amphetamine. So there I was shaking all over. It was the oddest sensation. The room was so cold. I had my jacket on. My fingers tingled. When I got up, I felt lightheaded.

Did I hear her correctly? Take this paper to the front. They will give you a copy of your panorama scan to take to the oral surgeon.

I am shaking uncontrollably. What the heck is the name of that drug? I had it before when I had a breast lump removed and it made me feel the same way.

Epinephine!!!

I find myself at the front desk answering questions. It's odd how many injections were put into the deep recesses of my jaw and I have no trouble talking. No, I don't owe any money since I'm a medi-cal patient. But, please call back and make the new patient appointment to see about the night guard, and price quotes.

I look over to Kats and he sees I am there. I have to wait for the woman to bring out the xray, so I sit beside him. He takes my hand and squeezes. Yes, that feels better. But, my legs they are jumping around. He places his foot on top of one of mine. Funny how something like that can trigger a collapse of the heebie jeebies.

Out in the car I call and make the appointment with Dr. Tarsitano. I've seen him before, years ago. But, I don't remember anything further than that. I am told the next available appointment is for sometime in November.

I'm glad I know how to advocate for myself.

"It's kind of an emergency. I have just been diagnosed with Leukemia. I need to have the tooth removed before I can begin chemo. Is there any chance---"

She interrrupts, "Hold on a second. I'll see if we can get you in any time sooner."

I hold the line thinking maybe they could squeeze me in about two weeks.

"We can get you in on Thursday morning at 8:30. But it can't be with full sedation. It will be with laughing gas. He has five other surgeries to do that day. This is the only thing I can give you."

I gratefully accept the appointment, though I hate to arise early. I cant trust my body to be feeling well at that time of day. I will automatically be stressed by that. I'm such a wimp. I need my beauty sleep, and if I have to get up early, I'm all out of sorts, bitchy, confused, forgetful, on edge. How will I go through with this on Thursday morning at 8:30 am? I don't know. I just will do what I have to do!

Life is always full of changes and challenges and sometimes wonderful respite. Looking for a respite just now, please. Anybody?

Dang, maybe sometime in November or in two weeks I could get a respite squeezed in.

Am I using that word correctly? Respite? Like in, "Give me a Break!" Okay, that sounds too desperate. I just need some chill. That's it. I be chillin'.

And I worry. If the roots of the tooth are curved and stuck into the jawbone, doesn't that constitute major surgery? Wouldn't that be better done under anesthesia and not novacaine and laughing gas? What is laughing gas anyway?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Pictures are of

Buffy "da Bampire Flayer",

Me "arted" with photoshop. I just love messing with things.

Lover's Point, Pacific Grove CA. I can't remember if I took that picture or if Kats did.

`Cause I live and breathe this Philadelphia freedom

I have been learning about this so I could understand the science behind my diagnosis. I was piecing it together based upon the blood tests that were done and looking up each component. I was getting the puzzle pieces but the whole puzzle was not coming together clearly. This has consolidated a small part of it and I find it simple and well written. Of course, there is more to learn.

While driving in the car last night, it just hit me. "I have Leukemia. I don't feel like I have Leukemia."

What was I thinking? What did I think it should feel like? I realize that some people don't get diagnosed until their disease is highly advanced and they have a lot of horrible symptoms. I guess it is a good thing I have so many other diagnoses going on all the time that doctor's visits and blood tests are a commonality in my life. Therefore, early diagnosis. It's no wonder I don't feel like I have Leukemia. I feel sick all the time anyway. How would I notice any difference?

Though, in hindsight I can see how some of my symptoms have increased over the last two years. Now, it seems to fit that these increased symptoms can be contributed to the CML. The one symptom that was driving me nuts, and really didn't have a correlation was the NIGHT SWEATS!!

This information is borrowed from another site. The link is posted below. I don't think I agree with the last statement as I have read elsewhere some information about possible causes, exposure to benzene is one of them. I most certainly have had extreme exposure due to swimming in the chemicals of Love Canal, which floated down the Niagara River in my own backyard for the first 14 years of my life. It is also thought to be a part of the reason that I had chondrosarcoma bone cancer in my twenties, as well. Damn! it gets complicated.

What Causes Chronic Myeloid Leukemia (CML)?

• To understand what causes most cases of CML, you need to know about your cells. Every cell in your body has the same DNA—the genetic material you inherited from your parents. DNA makes up your chromosomes, and contains genes that control the activity of the cell
• 
  
• Each time a cell divides, its DNA is copied into the new cells. Errors can occur during the duplication that affect the genes and may lead to the creation of cancer cells instead of normal cells
• 
  
• Chronic myeloid leukemia (CML) occurs when pieces of two different chromosomes break off and attach to each other

• The new chromosome is called the Philadelphia-positive chromosome or Ph+ chromosome
• 
  
• The Philadelphia-positive (Ph+) chromosome contains an abnormal gene called the bcr-abl gene
• 
  
• This gene produces the BCR-ABL protein, which causes your body to make too many abnormal white blood cells
• Ordinarily, the body is able to tightly control the number of new white blood cells
• In chronic myeloid leukemia (CML), BCR-ABL acts like a switch stuck in the "on" position, signaling white blood cells to continuously grow
• 
  
• There is no known reason for the genetic changes that cause chronic myeloid leukemia (CML)

This information comes from  http://www.mycmlcare.com/

What does it mean?

This is and example of what I am wanting to learn about Chronic Myelogenous Leukemia I have taken this out of context and paraphrased it to be at the gist of it.


Second generation Tyrosine Kinase Inhibitor (TKI) therapies approved for first-line therapy of chronic myelogenous leukemia (CML) offer newly diagnosed patients an expanded range of treatment options, according to Susan O’Brien, MD, of MD Anderson Cancer Center


First Question: What are Tyrosine Kinase Inhibitors


The addition of nilotinib (Tasigna®,) and dasatinib (SPRYCEL®,) as primary treatment options for patients with CML are the most significant updates to the NCCN Guidelines for CML. The newly approved therapies join the current standard of care, imatinib (Gleevec®) as frontline options for newly diagnosed patients.


This is good news, I think. It means these two are now approved for standard treatment instead of just one, Gleevec. Why this is good, is because they have less side effects, according to Dr. Wong. And he has told me he would prefer to give me Dasatinib.


“The development of imatinib revolutionized the treatment of CML, providing patients with a safe and effective treatment option associated with an excellent survival benefit,” said Dr. O’Brien.


However, in recent studies, dasatinib and nilotinib were associated with significantly higher response rates and reduction in the 12-month incidence of accelerated or blast phase in patients with CML.


Now this last statement bothers me. Everyone is saying what a good, easy cancer CML is, but here is something that stops me in my tracks. WHAT? You mean to say that after 12 months (from diagnosis??) the disease can progress? 


I do know that accelerated or blast phase is serious. Of course they are saying these two drugs can reduce that. But still! A bit concerning!


Subsequently, the FDA granted approval of dasatinib and nilotinib as a first line therapy for newly diagnosed patients with CML. Both drugs were previously reserved for use in patients with resistance or intolerance to prior therapy, including imatinib.


This is good news because with my cheap insurance, they would want to cover only Gleevec. Since these other two, better, drugs are now considered "first line therapy" it helps me to get the medicine the doctor thinks is best for me.


“Selection of appropriate TKI therapy will depend on the stage of the disease, the agent’s side effect profile and its relative effectiveness against BCR-ABL mutations.”


There's that TKI again. I know I looked it up. But it hasn't stayed in my mind, and it seems crucial. I know a little bit about BCR-ABL mutations. They have to do with some chromosomes that have gotten mixed up inside the genes. A bad sign, meaning you have active Leukemia. That's the short, vague, definition. It's much more complex than that.


In terms of monitoring response to therapy, Dr. O’Brien noted that complete cytogenetic response (CyCR) remains the gold standard, although patients who rapidly achieve a major molecular response (MMR) also have a low rate of relapse.


Apparently all the blood tests and bone marrow tests that have to be done is because of the necessity of learning response to treatment. In other words, "Is this stuff working?"


Second and third questions. What are CyCR and MMR, exactly? 


“Research has shown that patients who achieve a complete cytogenetic response live longer, whereas a molecular response has not been shown to improve survival.


Sure don't want the MMR, but what causes one and not the other?


There are clinical trials currently underway to determine if complete molecular response offers hope for treatment discontinuation or may be helpful in predicting future risk of progression or relapse.


I like the idea of clinical trials. I have been in them before. I think it would be cool if someone's leukemia gets knocked down so well that they might be able to quit taking treatment for the rest of their lives. 


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Note: Photo art created by me, Elizabeth Munroz

Un-Results

Waiting for the doctor to call to give me some results on my bone marrow biopsy. Waiting, waiting. Then the time comes to leave for San Francisco to see the mouth specialist to check the progress on my OLP.

Kats is driving and I'm checking my cellphone to see if a call had come through and I hadn't heard it. Then I notice the battery is dead! I call the clinic from Kats' cell to tell them to have the doctor call his phone. I explain the situation.

"So sorry Dr. Wong is not here today"

"But, he was supposed to call me and tell me some results today. He thought some might be in by now. Maybe they didn't come in and that's why he didn't call. Can  you check and see?"

On hold

"I don't see any results in your chart yet, but if you like, we can have Dr. Wu call you as soon as they come in. Dr. Wu is in the office today."

"Yes. Yes. That will work" and I provide the number for Kats' cell. I hang up and start to cry.

We are driving on a curvy mountainous road (Highway 17) in the midst of traffic. The cops are sitting on the edge of the road with their radar guns going. Too many people speed on this highway, crash their cars, and get killed, or kill others. Driving this road can be harrowing at certain times of the day. We are in that targeted time slot.

"Why are you crying?" Kats asked.

I dry my tears, blow my nose. "I don't know. It's silly really. It doesn't matter whether I get the results today or not. I don't have a computer with me to research what the results would mean."

"You can use my iPad.It's in the back seat" he says. But, we wouldn't have any internet access, so I say, "Yeah, Let's play Angry Birds!" and we laugh.

Why not find something silly to laugh about? Crying isn't going to change the situation except perhaps bring me down into misery. I can do that real well, if I let myself. Not necessary! Ain't doing that! I have a choice how I want to be. Perhaps some other time I wont have the control to stop it, but today, I can.

I'm feeling such a dunce. I run an online support group for chondrosarcoma patients. I know a lot about bone cancer, but nothing about Leukemias. It's like knowing a lot about riding a bicycle, but not a thing about shearing sheep. Riding a bike was important to me once. But now shearing sheep is a life or death matter! Okay, not that bad. But I can't leave a stone unturned. I like to know ALL the facts, even the ugly ones, even if they may never affect me. I'm like the kid who counts all the Cheerios in the box, lining them up on the table before he eats his breakfast. I want to check it all out.

In the case of the blood marrow results. There are certain numbers they are looking for attached to certain alphabets. I want the code. I want to break the code. And I wanted it yesterday! Damn! Why must I wait for my Cheerios?

Granted Dr. Wu may call me on Monday and let me know. He's not my doctor. He's the partner of my doctor. and that's okay by me. I already knew that Dr. Wong would be going out of town until the 17th. I just didn't realize he would be leaving on today... before he would call me. I misunderstood, I guess.

I am a horse at the gate impatiently awaiting the signal. I want to get my self on that fast track. I want to dig my hooves into the dirt and kick up the dust. I want to work up a sweat. I WANT TO KNOW EXACTLY WHAT I AM DEALING WITH!

I hate mysteries!

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First photo taken by my brother, Roger. Second photo taken by me while attending a fundraiser for Sarcoma.

Grinder

Didn't sleep well last night. I kept dreaming that I was putting an ad in the paper, "cancer patient needs dental work. Please Help". I felt so emotionally desperate in the dream, but not so when I awoke. I have GOT to remember to call the  county dental clinic on Saturday to see if someone has cancelled a Monday appointment to get my tooth pulled. That is covered by county funds. But anything beyond that is not. I need a night guard badly and that is what I was dreaming about. I grind my teeth in my sleep. I have TMJ and am missing a row of teeth on the bottom side where my tongue gets caught while I'm sleeping. In the morning my tongue is raw. Seems to me I need to do something about that before I'm on chemo. I understand that the mouth guard will cost about one third of my month's income and up.

Kats had set his alarm to get up early as he needed to go back home (57 miles). With a murderer on the loose and his neighborhood being searched by swat teams last night, it didn't make much sense for him to return then as they had the streets blocked. No one could enter or leave. This morning we learned that the murderer (he shot his co-workers) was found and shot by police. I don't have all the details, but them's the facts as I know 'em.

After Kats left, I figured I would go back to bed and snooze, but it didn't work out that way, so I had some tea and toast and the senior grocery bag delivery person came. He rings the doorbell, leaves the bag on the walkway in front of the door and takes off. Good thing I was awake, otherwise the bag would have been soaked. Sometimes there are some good things to eat. Fresh organic vegetables. Okay, maybe a little bit not fresh, but edible. Sometimes, bagels or cookies. I don't eat them because someone has handled them and put them into baggies. Just don't feel comfortable with that. (Miss Fussy) And the bagels are usually quite hard. Always a loaf of bread not too far past the expiration date. If I keep it frozen or in the fridge it might last. Sometimes it's hot dog buns or some other white bread. Sorry, I don't do white bread. I try to find someone among my neighbors who wants them. Every delivery always contains a couple big onions and lots of potatoes. If I cooked them up and ate them every day, they wouldn't be finished by next week for the next delivery. I don't understand what they are thinking. Maybe the plan was to feed senior citizens. That's what I remember from when they first organized Grey Bears. It was learned that some seniors were eating dog food because they didn't have enough money to buy groceries and the logic was beef stew for Fido was no different than beef stew for themselves.

I don't mean to sound like a complainer. Really, all the salad makings I get are wonderful, but I do feel guilty if I can't find someone to give the unwanted food to and have to toss it.

I especially like the fruits. They are grown right here outside of town and there is an abundance of berries, in particular. Supposed to be good for cancer patients, I understand.

All in all, my tummy is welcoming repast. Maybe it's due to the wonderful barbecue chicken that Kats cooked for me last night.

Another Day - Another Test

I had planned to go over to M A's house yesterday to help her with computer, but ran out of time as Kats arrived earlier than expected. We cooked dinner and hit the sack with our electronics. He taught me how to play "Angry Birds" on his new Ipad he got for birthday/retirement.

Since he retired our plan had been to go on a vacation to Yosemite. But, with all the medical appointments it has been put off. Now it wont be possible because they are having snow. At 13,000 feet, driving in the snow is no fun, especially if you don't have chains. Now vacation plans are on hold. What bad luck! The guy retires and the very next week his girlfriend gets diagnosed with a chronic cancer.

The Rheumatologist's office called to schedule my Reclast infusion for osteoporosis. I had just discussed the subject with my mouth doctor at UCSF. That is a big concern of hers since she see's so many patients with osteonecrosis of the jaw. I also mentioned to her my recent visit to the dentist and the necessity of having that one last wisdom tooth extracted. Now that she knows my leukemia diagnosis, she says don't hang onto it any longer even though it is my only tooth on that side. (I have missing teeth because of Sjogren's Syndrome). A discussion with the Oncologist and he agrees it should come out asap, before we start any chemo.

So here's the problem. Reclast can possibly cause Osteonecrosis which is more common in people with illnesses such as Cancer, Osteoarthritis, Osteoporosis.

Gee! Would that be me?

Yet, if I do without Reclast (once a year infusion), Osteoporosis can run rampant. Well, I guess it couldn't run, maybe crawl, or waddle rampant.

If I schedule the Reclast appointment, I will have to wait five weeks or more before getting my tooth pulled. Not a good idea since there is already infection. So, I will get the tooth pulled first and deal with Reclast later (when I am on chemo). People who get Reclast too soon after a tooth pull are much more susceptible to osteonecrosis.

I wonder how many other patients know to ask the kind of questions that bring out this information? It's a balancing act. If I hadn't consulted with each of these doctors it wouldn't have occurred to me that there might be an issue. Then where would I be? I'd be a toothless hag bent over in a lot of pain, grouchy and crotchety and angry. Where the heck is my broom?

Today, I had an appointment for an abdominal CT. I knew I had to arrive a couple hours early so that I could drink some fluid. So we planned to drive down to the beach and take pictures of the big waves and just soak up the beauty. We had a lot of rain in the last 24 hours and mother nature stirs things up really awesome along the beach. Breathing in that air is exhilarating. I need some of that!

However, arriving at the appointment, I learned I have to drink a half gallon of "stuff", one cup at a time every twenty minutes. So, there went our plans! I crocheted on my Grand Niece's crib blanket. I can hardly believe I'm going to be a great grand aunt soon! Kats played Angry Birds on his Ipad while we waited. I get frustrated with the game because my hand eye coordination sux.

Since I fell and bashed my shin against the bathtub the other day, my front thigh muscles have been killing me. I must have spasms in them because I tried to catch myself in the fall. I was successful and now they are paying me back. Getting around right now, I have to use my roller walker. Not at home. I just cling to the wall and yell with every step. Outside, I don't want to scare anybody, so glommed onto a walker helps a lot. Damn! I'm looking more like an old lady every day!

When it was time to have the scan the technician called my name. I "drove" my handy dandy walker as I followed her down the hall. Imagine my surprise when she leads me right on outside and into the parking lot. Inside a large trailer (super duper mobile home?) is where the CT scanner lives. I wont go into the logistics of going down hill on that wet surface. She never looked back once to see if I was caught up to her. If the place hadn't been abandoned I would have mentioned it. But, evil me, I figured when we did get to where we were going she would turn around and wonder what happened to her patient. Then maybe I could whine that she left me behind. Ha! (okay, that was a bit of Little Old Lady Syndrome. Wasn't it?) Because there are stairs to climb in order to get into the CT, there is a "lift". So, she was lowering it while I caught up to her, and I didn't get to whine. Really, I was nice to her and didn't say a word. After all, she has control of me while I'm lying down in a freezing room with a big donut machine whirring around me.

With my pelvis the way it is I have a little difficulty getting settled onto that plank one is supposed to lie upon while said machine whirs. Once settled in, we proceed. She goes in the other room behind the glass. I lay there not moving and taking in a breath and holding it on command. Soon we are finished. Or so I thought. She then brings out some IV equipment. Nobody told me about this!

I haven't got many good veins left except for on the back of my hand and I tell her, but she insists it's better to go elsewhere. She wasn't unkind about it, just professionally concerned. I've been through this routine enough times that I know resistance is futile, and I want to get this over and done with for heaven's sake. It is already past 8 PM!

This is when I learn that the abdominal CT my doctor ordered includes everything from my shoulders down to my "sitting bones" as she put it. I told her I only had one sitting bone. She looked at me funny, but I didn't give her any further information.

Once the test was done, we had the chore of getting me off the plank. Now mind you, I could have blown this young woman into the air like blowing on a dandelion at the end of it's bloom. So, I don't know who was in more pain getting me upright. She had to stay with me as I sat to make sure I wasn't dizzy, she said. That was when I asked her if she saw my single sitting bone.

I was so glad it was over, and so glad Kats was there to drive me home. He said he was exhausted and now he understood how it was for me driving myself here and there for all this kind of thing.

While we were doing this, his sister had called him to tell him that a man killed his fellow employees right near their home and was being sought by police who had locked down the neighborhood. She wanted to know when Kats would be back home. Needless to say, she had to stay inside with doors locked. I'm sad she had to be by herself like that. Pretty scary. We had some guy do that in Santa Cruz recently who ended up entering a Pre-School. This guy in Kats' neighborhood had tried to kidnap a woman and she escaped but not until he shot her in the leg.

The last I knew, they hadn't captured the man.

When we got back to my house, we learned that Steve Jobs had died. I knew him and his (first) wife a little bit when their kids attended the same Montessori school that Xavier did. He had arranged to have Macintosh computers in the classrooms, when X was about 6 years old. That kid learned how to use a computer before I did!!!

Two Leukemia Questions and Answers

I wrote in to the CML group and asked what a CCR is (it had been mentioned previously). I also asked if everyone still had night sweats during treatment or if they went away.

These were the answers:

CCR stands for complete cytogenetic response.

This is when they do a bone marrow biopsy and there are NO ph+ (cml)cells in the sample, but the sample is usually only 20 cells because this is a time consuming test (they have to actually look via microscope at dividing cells to see the chromosomes).

This is the original test and considered the gold standard. It is the same everywhere. And there should be NO errors in the test.

But looking at 20 cells is not a very sensitive test. FISH is a test that will look at 200 cells to see if any are ph+ (this is the symbol for the Philadelphia chromosome that is found in 95% of cml patients).

The pcr test looks at 100,000 cells or more

So as you respond to your medication, you need ever more sensitive tests to see how much leukemia cells you still have and to follow your progress.

PCRU is the PCR test with an 'undetected' result, meaning in 100,000 cells or more they did not detect a cml cells.......BUT this never means that you do not have any cml cells at all.
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You usually only have night sweats when the disease is not controlled yet....for most people they resolve, but some still have them occasionally or even regularly.

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The picture is of Pescadero Beach near the light house

Bone Marrow Biopsy Procedure

I've been so occupied with further testing and just ordinary medical appointments that I haven't had a moment to relax. Well, and... taking care of the Chondrosarcoma group, and hanging out at Facebook, and playing Words With Friends for a little escapism ( WWF is like Scrabble) and attending a writing class. I am also writing my autobiography-memoirs. I intend to publish. I'm about 2/3 of the way through it. I intend to publish.

Years ago when I had CS, cancer was not something discussed with others. in fact it was a shameful secret. I went through the surgeries and healing process without friends even knowing what was going on until the later years of recurrences. Lost a lot of friends that way. People like calls returned and want to go hang out. It was a lonely journey. It feels so good to know I wont be alone on this. My friends are being very supportive.

Last week on the 28th, I had a bone marrow aspiration and biopsy. Kats held my hand, but really didn't need to. It was a really easy and painless procedure. Better than having a tooth extracted. Truly, when the doctor first pressed on me before injecting the numbing stuff, It's what hurt the most, since I have Fibromyalgia. I know there is a lot of talk that it's terrible, but that was not my experience. That is not to say someone else might have a different experience. My behind was numbed out with novacaine. We waited about ten minutes for it to take affect. The doctor inserted (twisted?) a needle into the iliac bone until he reached the bone marrow and aspirated some fluid. Then he used a sort of thick needle to pull out a tiny piece of bone so that it can be sent to a pathologist to further identify what's going on with my Leukemia. I asked to see it, no thicker than a piece of spaghetti and maybe a quarter inch long. I should hear some results by next Friday. The rest will trickle in after that.

Everything points to it being the chronic kind of Leukemia. But I have a million questions. What I'm reading there seem to be different degrees and different genetic aspects regarding staging and so on. With modern treatment, from what my doctor said, my chemo will be in pill form. I will have to take it the rest of my life. As time goes by there will be newer better medication and who knows? possibly a cure. I suspect I will be about 90 by that time. ;-)

I have joined an online CML support group. From reading people's updates, I'm finding that most all do well with their similar chemo.  So, I feel hopeful that my future is assured, as long as I'm not walking down the center divider of a busy freeway and a UFO lands on me. Ha Ha! I know... My sense of humor is warped!

Going over my old medical records (blood tests) and based upon symptoms I've had crop up, it looks like this started manifesting about two years ago. The most annoying symptom is night sweats. Other than sleeping in a vat of ice, I don't know what else to do.

The pictures were taken by Kats in November 1998 when we went to Lake Tahoe.

Bone Marrow Biopsy

Off to have the biopsy today. I'm not sure about why it is necessary, as they already have blood results. I will have to study up on this. 

I was diagnosed with CML last Tuesday as previously mentioned. The Bone Marrow Biopsy is in a couple hours from now without anesthesia. 

When I mentioned this to facebook friends I got a two to one "vote" against it. Four people said don't do it without anesthesia because they had a friend who said so. Two said it was not that bad because that is was their experience through with their ALL (a different type of Leukemia than I have, more severe). 

I got another opinion from a young man in my autobiography writing class who has seven years survival with ALL. He said his first bone marrow biopsy was done without anesthetic when he was a teen and "that it must have been okay" because he doesn't even remember it. Later ones he had were with anesthetic. He doesn't know why.

So, here I go. Hope I won't be sorry that I'm doing this without anesthetic.

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Picture was taken in 1998 by Kats when we went to Lake Tahoe. 

This was in desert area on the way to Reno, Nevada, I believe

Bone Marrow Transplant??

My friends are asking me if there is anything they could do to help me, I couldn't think of anything except to continue to be friends and be supportive.

But, now it occurs to me that there really is something they can do. Something important.

Even though I might not need a bone marrow transplant for a long time, I hope this will be something given consideration by you, the reader. It might not necessarily benefit me directly, if we're not a match. If everyone would be willing to become a bone marrow donor, certainly they could help someone in the same situation as me. And people would not needlessly die for lack of a bone marrow donor.

One does not need to give up their bone marrow right at the beginning. All that has to be done is to take a swab of the inside of the cheek to check the DNA to find out if there is a match. The records will be kept on file. Then if someone needs a bone marrow transplant the donor will be requested to donate.

I've heard rumors that it is terribly painful. Not true.
I've heard rumors that it hurts the donor more than the recipient. Give me a break! The recipient has been through tons of chemo, hardly has any healthy blood left in their body, is weak and already suffering much more than the donor can imagine. Plus, it is not so difficult as it once was. Sometimes it can simply be a matter of donated blood for stem cells to be harvested.

You can become a Bone Marrow Donor! Save someone's life! Read up on it before saying no. Educate yourself! Okay? Thanks!

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I took the picture above. It is in my own backyard. A friend once mailed me this cow pelvis. We both had the same kind of bone cancer in the same part of the pelvis. I think it is cool. I suppose some might not think so. This view, by the way, is right outside my bedroom window.

Leukemia Diagnosis Today

After a great deal of tests and results, I was diagnosed with Leukemia today. There is no doubt about it. No if's, and's or but's. The kind I have is called Chronic Myelogenous Leukemia. I was diagnosed through Palo Alto Medical Foundation Oncologist and Stanford University Pathologists. They know what they are doing. 

Right now I am in the early stages. So, I am not too sick. Just bone pain and tiredness, low stamina and tummy problems, which is common for me considering my history. It's just a lot more, plus NIGHT SWEATS!!!

The chemotherapy is going to be in pill form, so I won;t have to be hospitalized. I will take it everyday for the rest of my life, or until my body rejects it. When or IF that happens I will requrie a bone marrow transplant. The ideal would be if it would be derived from my brothers or sister, if we match. That will have to be determined later. Maybe years later. Like I said. this kind of cancer is chronic. It is my understanding that it can be well controlled for some time.

I am not freaking out about it. The doctor seemed to be a little confused that I didn't cry or act disturbed or angry. I really felt little. It just seems like one more thing...  After all, I have lived 43 years beyond the diagnosis of my previous cancer, Chondrosarcoma, (which is not related to CML in any way whatsoever). So all those years have been a gift and this somehow just seems like a fly on the window screen. 

But, I do feel profoundly sad.

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Picture was taken by Kats at Rio Del Mar Beach, Aptos, California. This is right near the spot where we fell in love.

Bothered

I never know how to describe this feeling. It's not entirely a panic attack at all. More like feeling anxious, or distraught for no reason. Feels sort of like I had a gallon of coffee and have all that caffiene running through me. But, not in an energizing way. If feels more like a baseball glove pressed hard against my face, or a tarantula with a grip.

I do not know what might be bothering me emotionally, or if anything is bothering me at all. Is it just a physiological sensation? Or is there a mental pressure wanting to be worked out. I don't know. I have no choice but to stay with it and just see if I can make it go away or at least diminish enough to feel less like I'd rather be jogging!

Went to reading group yesterday afternoon. First dropped by to get my allergy shot and learned I was there on the wrong day.

Some Thoughts on Cancer Treatments

In regards to the idea of hyperimmunity, one of the concepts that come across in many people's minds about cancer is that the immune system needs boosting. Therefore, high doses of vitamins or herbs might be used unjudiciously. There is a lot of information out there supporting this idea, and mostly it's a lot of quackery.

I went with Helen, my now ex-housekeeper, to a local cancer support resource center the other day. She comes from an ethnic group that very much uses certain herbals and alternative practices. She's Navajo on one side and Filipino on the other. She is due to begin chemo for her stage 4 colon cancer next week. She's already had a foot and a half of colon removed, an ovary as well as some nodules in her liver. When she asked about supplementing her intake with a certain immune boosting herb common to her culture, the Nurse Practitioner gave a great answer.

"When you have a group of cancer cells clumped together, they need oxygen, so they start to grow blood vessels in order to get some. One of the things that immune boosters do is provide a way for our body to be at it's best, therefore it gives the opportunity for the cells to grow better, stronger blood vessels. Especially in the case of those recieving chemo or radiation, the treatment is to make it difficult for the cancer cells to grow and deprive them of oxygen and other nutrients. So supplementing is going to interfere with the treatment. After treatment is over with, then the immune system can be encouraged to bring the patient back to health."

By the same token, when we are dealing with Chondrosarcoma, I keep this in mind. Though chemo or radiation do not work, except in rare circumstances, surgery is absolutely necessary.

When we have been cut into and cut to the bone, our body is in major stress, and it is putting all it's energy into healing so it puts everything it can into the process (and this can take up to a year for bone to heal). If we are taking high doses of "super supplements" we are taking a chance of increasing the growth of possible cancer cells that might still be in the body.

I am not against complementary treatment. I've done a great deal of it myself over the decades. I've also done a lot of stupid stuff, simply because it was popular. Raw liver, apricot pits, seaweed and powdered chalk for example. They were once the rage. I've done a lot of weird stuff out of fear. (more on all that later). But finally, I learned to research and verify whether something was honestly useful. The best source of verification is in Pubmed, which is the National Library of Medicine the world's largest medical library. where all medical articles are kept.

One thing I feel strongly about, and quite frustrated too, is when someone who is diagnosed and then talks bad about the modern practice of medicine. I don't know if I will ever understand the dichotomy. How can one who is against medicine even get diagnosed without benefiting from all the science that allowed for diagnosis, (and treatment)? Any why are they going to doctors in the first place if they are against them?

One thing I've noticed about having Chondrosarcoma, is that it really makes me take a look at how I lived my life before Chondrosarcoma. Making changes in diet, sleep, exercise and so on seems to be a natural progression. Even those with a healthy lifestyle might need to step back and take another look at it.

Some folks think the more exercise you do, the more healthy you are. I don't think so! Sometimes we can overstress ourselves in the exercise category, for example, by pushing beyond what is healthy. Then we end up with inflammation of the muscles and joints. Inflammation will encourage chondrosarcoma to grow.

Getting enough sleep seems to be pretty much ignored even by those who give great advice and information on healthy living. So much research shows that people who get enough sleep are healthier. It gives the body a chance to heal itself. A healthy full night's sleep is difficult for me to maintain on a regular basis. Therefore, the fluctuations in my well being.

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Art by Elizabeth Munroz