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!

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

Beaten Down By Medical Diagnoses?

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

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

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

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

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

Knowlege is Power. Empower Yourself!

Leukemia and Burning Man

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

Why I Will Never Go to Burning Man

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

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


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

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

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

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

Yup! All of those things, and more.

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

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

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

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

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

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

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

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

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

Only 32 Like Me

Poking around the National Cancer Institute site today, I found a clever searchable chart. The one I am presently looking at breaks down by county, how many people have cancer. For example: My county has 1,119 average annual count (between 2004 and 2008) of cancer patients. The population of Santa Cruz county in July of 2008 was 253,137.

You can also tweek the chart to give a break down of the types of cancer. There are 162 annual count for breast cancer in females in my county, 199 for prostate cancer.

Here I am with a diagnosis of Leukemia. When I look at the chart for my county the average annual count for people with Leukemia is 32.

picture is symbolic

I can break the chart down further by chosing sex or race. I chose Asian and came up with "less than 3" for Leukemia. Over in  Santa Clara county the number is 34. Santa Clara county has a high Asian population so that is understandable.

I then chose males with Leukemia in Santa Cruz county. The number is 18. I know one of them. He was in my writing class last fall. He has been dealing with his Leukemia for the last seven years, so, he is definitely one of those 18.

The average annual count of Leukemia patients for the whole state is 3,998. When the count is for all types of cancers in the state, the number is 147,153.

The death rate for Leukemia in Santa Cruz county is falling. The average deaths per year from Leukemia is 14. That's a little less than fifty percent.

This is the link to this handy dandy chart system

Coughing up a Lung?

I've been sick since Christmas time, presumably a cold or flu. It has hung on and hung on. Mostly it is the coughing that never lets up. This is the kind of coughing that is dry, doesn't produce the relief of mucus. It is the type of cough that squeezes the bronchi and it takes a great deal of concentration to not give into that squeezing.

Moving about or talking increases the frequency and intensity of the coughing.

I used every possible over the counter and complementary method I could think of to help get some control of the coughing and give my body some rest. Attempts were futile.

The cough was so intense my head throbbed and my rib cage objected to the constant wracking (hacking?). I could even feel sharp pain in my lower spine when my cough was repeating itself without respite. Yes, yes.. this is what coughing up a lung feels like!

Since I am mildly asthmatic, I am aware of when my breathing is compromised and it certainly was getting that way. Therefore I went to Urgent Care and received a nebulizer treatment. I have my own nebulizer at home but was out of the medicine to put in it. Also, I received a prescription for the medicine (albuterol) and another for Prednisone pills. They helped considerably. But, now the prednisone has run out and the coughing has returned full force.

Two days later I saw my oncologist who ordered a chest xray, just in case there was something going on. I went to have my xray. The technician seemed a bit sullen but I figured perhaps she had a bad day. When I asked to look at my xrays, she let me look at them. This seems to be pretty common these days, at least here in California. In years past I have often been refused that option or told I wouldn't know what I would see, or I was not qualified to look at my own xrays.

I'm not a radiologist. Though I took medical courses in the past with the goal of radiology I never finished my education. I cannot officially read an xray, but I have seen enough of my own that I can at least recognize when something appears to be different from the others that have previously been taken.

I was not surprised to notice a nodule in the lower lobe of my right lung. It has been there quite some time. (long story about that. I'll write about it some other time)

Therefore I was very annoyed to read the final report as read by the radiologist not noting a nodule in my lung, but identifying it as a "nipple".

Ganoderma Lucidum Causes Apoptosis in Leukemia

I sent an email to my oncologist on Nov 11 regarding my curiosity regarding a research paper a friend of mine showed me. But, he never responded. Finally, I tried to talk to him about it in person, but he just waved it away and didn't say anything. I guess he doesn't like to discuss things like that.

I realize that this research is only on the cancer cells, and not on people. But, I think it is fascinating. And I hope there will be follow up for those who might want to take it. Anyhow, this is it:

Ganoderma Lucidum causes apoptosis in leukemia, lymphoma and multiple myeloma cells.

(What is Apoptosis?)

Abstract
Over many centuries, herbal remedies have treated a variety of ailments. This empiric observational approach has produced a number of leads for formulated medicines.

Ganoderma lucidum extract was screened for its anti-proliferative activity using a panel of 26 human cancer cell lines.

The six most sensitive hematologic cell lines were:
HL-60 (ED50 26 microg/ml),
U937 (63 microg/ml),
K562 (50 microg/ml),
Blin-1 (38 microg/ml), 
Nalm-6 (30 microg/ml) 
and RPMI8226 (40 microg/ml).

Cell cycle analyses revealed a G2/M arrest, most prominently in HL-60 cells.

Four hematopoietic cell lines (HL-60,  Blin-1,  U937,  RPMI8226) were examined for apoptosis, which ranged between 21 and 92%.

After exposure to Ganoderma lucidum extract, HL-60 cells became multinucleated with an increased DNA content.

These results indicate that Ganoderma lucidum extract has a profound activity against leukemia, lymphoma and multiple myeloma cells and may be a novel adjunctive therapy for the treatment of hematologic malignancies.

Source:

Leukemia Research Journal
2006 Jul;30(7):841-8.
Epub 2006 Jan 19.

Ganoderma lucidum causes apoptosis in leukemia, lymphoma and multiple myeloma cells.

Authors:
Müller CI, Kumagai T, O'Kelly J, Seeram NP, Heber D, Koeffler HP.

Comment in
Ganoderma lucidum in cancer research. [Leuk Res. 2006]
PMID: 16423392 [PubMed - indexed for MEDLINE]

If you would like to read a full PDF article, it's HERE

Leukemia Types and SubTypes

I keep finding some references that suggest Leukemias are a type of sarcoma. I had come across that same information a few years ago when I was researching how many types of sarcoma there are. (about fifty some) But, I didn't give it much consideration. Sarcomas are one of the rare cancers. Only about one percent of all adult cancers diagnosed are sarcomas.

Whether all Leukemias are forms of sarcoma, I am unable to determine. And that brings up a point I wish to make. In my ignorance, I always thought that Leukemia was one disease. I was mistaken. There are different types of Leukemia.

According to wikipedia are a "total of four main categories. Within each of these four main categories, there are typically several subcategories. Finally, some rarer types are usually considered to be outside of this classification scheme."

Acute lymphoblastic
Chronic lymphocytic
Acute myelogenous
Chronic myelogenous
Hairy cell
T-cell prolymphocytic
Juvenile myelomonocytic
Large granular lymphocytic
Adult T-cell leukemia

I counted nine subtypes.

The type I have, Chronic Myelogenous Leukemia (CML) has a five year survival rate of 90%. Pretty good odds. Huh? If I last 5 years, I will be 71. I figure by that time, there will be new drugs to treat CML. Hopefully, they will be more effective with less side effects. Best yet would be a cure! Perhaps if that's the case my longevity genes will carry me into my 90's or hundred's as have been the case with my ancestors and other close kin.

Another fallacy I once believed about Leukemia (in general) was that it was a cancer of red blood cells that caused fatal anemia. I have learned that is not the crux of it.

The reason CML has myelogenous in the name is become a source of the blood disturbance that is part of the diagnoses begins with the blood cells called myelocytes, which are very immature cells produced in the bone marrow. They are not supposed to be in the blood stream. Once they get into the blood stream they crowd out the healthy blood cells and that's the problem.

I find it very difficult to explain at this time, because I am still learning. I wish I had paid more attention in college when I took pre-med courses. (I never completed my dream to work in the field of radiology as I then had recurrences of Chondrosarcoma to deal with!)

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

Photo art by me, Elizabeth Munroz

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!

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!!!

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.

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

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

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.

Enough is Enough!!!

Laurie called me last night. Her 13 year old daughter, Chloe had passed out and then went into a seizure. (She's never had one before).

Chloe is a twin to Rose. She is the one who performs, dances, sings. Quite talented, I think. Rose is the Geek Girl in the family.

Lucky that Laurie is a nurse. Her middle son, Justin lives at her house with his wife and three kids because his landlord's house got repossessed and they had to hurry and get out.

Justin is a paramedic. He took care of Chloe until the ambulance arrived. They took her to the nearest hospital. But, when they discovered her white blood count was very very high, they sent her to a bigger hospital. They did a lot of tests on her, including a spinal tap. I was pretty worried she might have Leukemia. She had no fever and it didn't appear she had any infection.

They put her in a room by herself and Laurie stayed overnight with her. The next day (today), she had scans and EKG and EEG. The doctor never came in until this evening to tell the results.

Chloe has an infection in her sinuses and she now is taking antibiotics.

I find it interesting to realize that one can be that sick and not run a temperature beyond 99 degrees.

I didn't feel well myself and probably a good thing otherwise I would have gotten stressed out. Being sick and lowly has it's advantages, I suppose. I had all I could do just to take care of myself. I think it is left over feeling druggy from the Abilify. Though, I did not take any today. I think I will wait til Monday and give a call to the doctor and ask if I can take it at bedtime instead of morning.