Does Leukemia Run in Families?

1918
Myron Rockwell Borden
and son Alvin

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

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

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

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

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

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

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

There is also this article:

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

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

Guess what?

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

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

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

The direct line ancestors of my cousin and I are:

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

1960 Alvin, Velva & Lois  Borden

Anyone who does genealogy will know what all that means.

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

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

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

My Best Friend Forever

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

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

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

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

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

Look at the joy on those faces!

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

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

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

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

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

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

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

Elusive Happiness

Photo by Elizabeth Munroz

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

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

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

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

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

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

Photo Art by Elizabeth Munroz

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

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

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

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

Photo by Elizabeth Munroz

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

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

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

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

Hanging in There

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

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

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

~~~ Elizabeth Munroz

Beaten Down By Medical Diagnoses?

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

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

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

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

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

Knowlege is Power. Empower Yourself!

Philadelphia Positive

Today is the day.

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

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

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

Today is also International CML Awareness Day.

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

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

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

It's Only Fat!

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

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

Even Roses Have Bad Days

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

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

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

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

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

A Little Scare

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


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

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

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

scattered-brain
Digital Art by Elizabeth Munroz

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

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

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

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

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

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

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

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

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

Live and Learn!

Leukemia and Burning Man

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

Why I Will Never Go to Burning Man

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

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


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

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

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

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

Yup! All of those things, and more.

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

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

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

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

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

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

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

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

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

Second Bone Marrow Biopsy

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

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

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

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

Leukemia and Kittens

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

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

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

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

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

Doing Better, More Hopeful

I'm doing better. I've gotten more accepting of the side effects of the chemo. I have no choice about it. I have to take it the rest of my life. The pill was once trialed on chondrosarcoma, didn't work. But, is working for my Leukemia. My blood work is very close to normal. I don't know what's happening with my bone marrow, though. Will not have a new bone marrow biopsy for a while. As long as my blood stays how it is, no real pressing need to do it.

The side effects are more headaches, skin rashes, nausea, pounding pulse in my head and neck. The rashes bother my the most. Some of the treatment for it, (would you believe?) is moisturizing cream. The instant I'm out of the shower, I've got to slather it on head to toe. It's keeping the bumpiness down to a tolerable level. The more bumpy it is the more it itches. The sun seems to make it more itchy, too. And night time makes it worse, too. When really unbearable I take Benedryl. Gives me a good night's sleep, too!

Headaches... Tylenol. Pounding pulse, I can do nothing about, just get active and I don't notice. Lying down seems to increase it, or maybe I'm just noticing it more.

Nausea has changed my diet considerably. As long as I eat bland food, no seasoning, I can sort of keep it under control. Taste is off, sometimes I will think of a delicious food I can eat, then try to eat it and it will taste like cardboard. No sense in eating it! I don't go out to restaurants anymore, waste of money! My boyfriend is a gourmet chef. Spoils things considerably for him. Oh well. It is what it is.

Now... the big advantage to the nausea is that I have lost more than twenty pounds since November. And I certainly needed to lose weight. I am eating more healthy foods, more salads, cooked veggies and fruits, less meat. I ate these before but too much junk food interspersed. But, once my stomach rejects a food I have an aversion to it, and no longer crave it. Interestingly, with the lost weight, my GERD and hiatal hernia are not bothering me so much, and the nausea is not so bad anymore.

Another big advantage to the chemo: For the last two and a half years I was having SEVERE bone pain. I thought it was a normal process of aging related to my weakened pelvis and spine issues. I thought I would have to live with it the rest of my life. Now I know that the increase in pain during that time was caused by my bone marrow going through the changes of the Leukemia developing. Did you know that your DNA gets morphed, and is no longer the DNA you were born with? Since all that has improved due to the chemo, my pain levels have decreased considerably. I still have arthritis pain and osteoporosis pain, but it's nothing to what I had been going through that had needed Dilaudid to be controlled.

The other thing is the fatigue I was experiencing all that time has improved. I have more energy. I was dragging myself through the days, even too tired to write in group. And now that I think about it, I should be updating the group with the very same info I have just shared with you!

Think On It

“Dare to live the life you have dreamed for yourself. Go forward and make your dreams come true.” ~ Ralph Waldo Emerson

Source: Uploaded by user via Jan on Pinterest

Losing Weight is Good?

Skinny me, a long time ago

Today I learned that I have lost twenty four pounds since I started on Chemo.

Of course, the good thing is that I lost weight.

The not so good thing is what caused me to lose weight.

Not  being able to take my stomach medicine because it interferes with the absorbtion of  Dasatinib ( Sprycel ) by sixty percent made it necessary to go cold turkey with my tummy meds. I'm sure I have mentioned this before. Yes?

So the results were instantaneous. Tummy problems full force. It's taken these many months to get to the point where it's not so terrible to live with, though I often question quality of life. Do I want to be sick the rest of my life by not treating tummy problems? Or do I want to be sick with the long term results of untreated leukemia

I haven't even mentioned the meds I cant use anymore for pain. Have I? We wont go there right now. Tummy is the biggest problem.

Needless to say, it has gotten down to experimenting with various foods to learn what my tummy can handle and what is no longer my friend. Right now I can eat apple, banana, asparagus, oatmeal, white meat turkey and occasionally, a little bit of red meat. I'm sorry my vegetarian friends. I cannot eat soy products either. My favorite food, a good salad is a touch and go situation. One day I can have a little, another day it will sit in my tummy heavy and nauseating.

This really bothers me. Losing twenty four pounds without an adequately balanced diet is concerning. I've got to look at the contraindications on the Dasatinib labeling sheet again. I hadn't given it much thought in the beginning, but there are several nutritional supplements that are not to be taken.

Well.... Who knows? At the rate I am going, perhaps I will look like the skinny wench in the picture again!

Primary Response and GI

This was the response I received from my Primary Care Doc:

"You need to work closely with GI regarding these issues.

We can also send you to the nutritionist to help sort out the diet. Push fiber to help the questran go through - metamucil or citrucil.

If this isn't doing the trick, schedule an appointment in the office to see how we can help resolve some of these symptoms.

Sorry you're having such a hard time."

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

So, then I sent email to my GI Doc: 

Dear Dr ...

If I am going to remain on the chemo and continue to have uncontrolled GERD, I would like to have more effective treatment options that what I have right now.

Simple methods of controlling food intake is not possible. I can barely eat anything without having reaction. I've been coughing for weeks. Had a cold or flu since the week before Christmas. Or was it all simply gastrointestinal? Diarrhea, vomiting, coughing. Not well controlled by typical medications for same, except imodium. After new years things seemed a bit better. However the coughing continued. I have a history of asthma. I know what to do for it. It's not asthma. I have allergies. It's not allergies. Maybe a combination. But definitely as soon as I eat something I am coughing. Up until last week, a dry hacking incessant coughing throughout the day. Speaking brought it on. Bending over brought it on. Finally I realized it must be the GERD. I stopped eating except for the barest minimum I could tolerate. Things have improved. But I doubt this is healthy.

In the meantime, I have lipids that have gone sky high, and now needing to take Questran, which doesn't sit on my stomach well, either. 

Quality of life means something to me. I have spent years dealing with so many health problems I found that having some control made life easier. If I have to stay on chemo pill for the rest of my life and not have well controlled other health issues it is not worth it.

I am at the point where I cannot find sufficient answers on my own. 

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

This was his response:

I just got your email.

Please schedule an office visit with me and bring in the copies of all your prior gastroenterologic procedures with pathology. 

I can then help you to manage these issues.

Take Care

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

This was my response:

I have appointment now scheduled with you on March 5.

Are you wanting my endoscopy report that showed nothing from 2010 and 2011 from UCSF? 

A history of my visits to Gastro at UCSF for 2010 and 2011?

From 1997 or whenever it was at UCSF for the basket procedure and cutting of the something of Vater?

Or are you wanting my gastro history from the 1980's where they did the busting of the gallstones with the machine and the ensuing pancreatitis?

Records from Dr. C.... are not available for the years when I had the chronic pancreatis. At least as far as I know. 

Tummy Turmoil

Letter to My Primary Care Physician

I don't even know how to eat a healthy diet anymore. It was a struggle before being on chemo, as I have the oral lichen planus which only permitted bland foods and little chewing. I've had that almost permanently for seven years.

I was also on a fairly bland diet because of GERD. But, now since I cannot take H2 blockers or proton pump inhibitors, controlling the GERD is not happening, even though I've got the misoprostol which helps a bit, and that other one I can only take on an empty stomach. (Sucralfate?). The only time of day I have an empty stomach is when I first wake up. After I eat something, my stomach is never empty for the rest of the day. My food just sits there, burping and nauseating throughout the day. I dread eating anything most of the time. And now of course, we realize all that coughing has been caused by the GERD (Though it started with that cold or flu I had before christmas).

So, as each day goes by, I test whether or not I have appetite. If I don't and I eat, I just feel worse. So, I might nibble on whatever feels safe to eat. Sometimes I can eat soup, cereal or even part of a frozen dinner. I hate it that lettuce makes me sick now. I miss my salads!

If I have to stay on this chemo the rest of my life and just tolerate the inadequate control of my tummy problems (also have hiatal hernia), I know I cannot maintain a "healthy diet" that will change my cholesterol issues. I find this whole thing extremely frustrating and discouraging. Even the Questran sits in my stomach like a rock and queasiness is my companion. I've had to carefully balance my health for years. This is out of control. I'm at a loss for what I can do.

Doesn't seem worth it to be on the chemo!

Chemo Vs. Statins... Chemo Wins

This is what happens when you stop taking statins for the sake of taking chemo.

Lipid Profile Results

Component	Your Value	Standard Range	Units	Flag
Fasting Status
Total cholesterol	274	98 - 212	mg/dL	H
Triglyceride	308	<200 -	mg/dL	H
HDL cholesterol	44	>40 -	mg/dL
LDL Calculated	168	<130 -	mg/dL	H
Cholesterol to HDL Ratio	6.2	1.00 - 4.50		H
VLDL (Calculated)	62	5 - 40	mg/dL	H
Interpretation	Current research indicates there is significant association of arteriosclerotic coronary artery disease when: Total Cholesterol >240 mg/dL LDL Cholesterol >160 mg/dL HDL Cholesterol <35 mg/dL Total Cholesterol/HDL Ratio >5.0