Thursday

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!

Monday

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. 




Sunday

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!

Friday

Chemo Vs. Statins... Chemo Wins


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

Lipid Profile Results

ComponentYour ValueStandard RangeUnitsFlag
Fasting Status  
Total cholesterol27498 - 212mg/dLH
Triglyceride308<200 -  mg/dLH
HDL cholesterol44>40 -  mg/dL
LDL Calculated168<130 -  mg/dLH
Cholesterol to HDL Ratio6.21.00 - 4.50 H
VLDL (Calculated)625 - 40mg/dLH
InterpretationCurrent 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
 

I am running out of veins to have my blood drawn from. With all my past medical history, the ones in my inner elbow have scar tissue in them, so it has gotten to the point where blood draws have to be done from the top of my hand.

Unfortunately one time when I was in the hospital for a kidney infection an IV was being inserted and the vein got "blown" and that hand has been useless for blood draws ever since. So, now I only have the left hand available for blood draws. Two veins were still usable.

But, with all these weekly blood draws, they are flattening out. So, now the blood has to be drawn from the middle of my forearm.

I used to be very unaffected by blood draws and IV's. But as the years have gone by, more problems have occurred and they have taken their toll. So now, I go for a blood draw making sure my hands and arms are warm to keep the veins puffy, they say. I do a relaxation exercise and try to live through the new found pain. Why did they never hurt in the past? Why do they hurt now? I don't get it.

To get to my point...

There is a specialized blood test the doctor ordered called a BCR, and that's what has now been ordered!

Wednesday

I Can Do Anything Better Than You Can!

I'm happy I came across this:

"Dasatinib, administered once daily, as compared with imatinib, administered once daily, induced significantly higher and faster rates of complete cytogenetic response and major molecular response.

Since achieving complete cytogenetic response within 12 months has been associated with better long-term, progression-free survival, dasatinib may improve the long-term outcomes among patients with newly diagnosed chronic-phase CML. (ClinicalTrials.gov number, NCT00481247)"



Why am I happy?

Dasatinib is the chemo drug I am taking for my leukemia. When they mention "complete cytogenetic response and major molecular response" it means that the way out of line bone marrow and blood is getting back to normal. It doesn't mean a cure, but it means it is controlled better. That's the easiest way to explain it at the moment.

The other one mentioned above, Imatinib is an older chemo drug that is sort of the great grandpa of the one I am taking. It used to be the best one around. But according to the above, it looks like my chemo drug is so much better!

Dasatinib is also known as Sprycel.

Imatinib is also known as Gleevec

~~~~~~~~~~~~~~
Note: The art is my own altered photo. It is called Chemo Fire

Thursday

Quitting Medical Care

I sent this message off to Palo Alto Medical Foundation Customer Service today, after not being able to get through their phone system to talk to a human being. 


I hope they will respond, at least acknowledge there is a problem. 


I don't want reassurances that their phone programming is "in process" of getting straightened out. 


I just want to know WHEN!

To:
Customer Service
From:
Elizabeth M Munroz
Sent:
01/26/2012 4:59 PM
Topic: Customer Service

I am so fed up with your phone system! I just spent an hour on the phone just to have one question answered. An important question related to bloodwork ordered by my oncologist. It was very stressful to Hold and listen to music and then get connected only to hold and listen to music then be transferred to another department where I then hold and listen to music

And all along being told that my phone call is important!

Not to mention that when I finally talk to a person and they find it necessary to put me on hold for something I have gotten disconnected three times today. At least one person did call me back.

By the time I get to talk to the right person to ask my question and get my answer I am so frustrated and angry that it is hard for me to be civil. As it stands I decided to not bother to go through with my specialty blood test.

I am so ready to quit being a patient at PAMF that I am now looking around for other doctors to take over my medical care. Unfortunately I need a whole team of doctors for my multiple diagnoses.

I am so sad and disturbed by all this business! I feel like PAMF could care less!

~~~~~~~~~~~~~~~~
Note to Dear Reader: Picture is my own digital art redefined from a photo of an average view. It's called, Lost in Abyss.

Friday

How to live with Stings, Barbs and Quills

Don't be left out in the cold!
It was the coldest winter ever. Many animals died because of the cold.

The porcupines, realizing the situation, decided to group together to keep warm. This way they could cover and protect themselves.

But the quills of each one jabbed and wounded their closest companions.

After awhile, they decided to distance themselves one from the other and they began to die, alone and frozen.

So they had to make a choice: either accept the quills of their companions or disappear from the Earth.

Wisely, they decided to go back to being together.

They learned to live with the little wounds caused by the close relationship with their companions in order to receive the warmth that came from the others. This way they were able to survive.

Author unknown


Photo by Pat Kavanaugh

Cancer Chances Increase in Previous Cancer Patients

I'm aware that getting a secondary cancer is much more likely than the percentages for a person who has never had cancer. Sad but true. 

I think in some cases it is because of the treatment a person has had in the past. For example, in the chondrosarcoma group we have had a couple of breast cancer survivors who then got chondrosarcoma, which was caused in their case by the radiation they received. Same thing, too with two men who had previously had prostate cancer. As far as I know I am the only one who developed Leukemia as a secondary cancer to Chondrosarcoma. Neither cancer is related to the other. My chances increased just by having had the first cancer. I knew this from reading about it a long time ago and I was always wondering when that second shoe would drop.

But, because I had the previous cancer and survived, the curling up in a corner and being miserable doesn't happen. That only happens when I am sick with the flu. I learned a long time ago that life will pass me by if I don't live it. I can live it limping or even lying down if I am not doing well. But, for me, once I get moving, it helps. Though, with the leukemia, I find I tire out easier. So sometimes I just have to sit down and read a book or something for twenty minutes or so, then get back to what I was doing before. Frustrating, especially if I am trying to clean out a closet or something. 
 


Sunday

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

Saturday

Trusting Doctors

After the incorrect reading of my chest xray and my writing to my doctor asking the radiologist read it again and compare to an old CT scan, she wrote and apologized. Then I sent her the response below:



"I appreciate your taking a second look at my chest xray and comparing it to my previous CT.

I understand there is a big change going on with the system. That's scary to think about. What if there are other patients who have medical issues that are not being recognized?

I realize as a physician, it must be frustrating to work in a situation like this. I would find it nerve-wracking. I consider the clinic to be superior and I sure hope the system changes get completed soon, for the sake of the professionals who work there as well as patients.

I try not let my trust issues affect me with new doctors, but it does come back to challenge me often. The previous situations that affected me and make me wary of having full faith in my physicians were unfortunate. One was an orthopedic surgeon who removed a "benign" tumor from my pubis. When it grew back in six months, he told me it was scar tissue and not worry.

It continued to grow upward inside my pelvis for two and a half years. I saw another orthopedic surgeon who took an xray and said nothing was wrong and that the pain in my hip was essentially in my head. I was age 22 but had enough sense to recognize that a cauliflower shape on the xray in my pelvis did not belong there.

I went to see another orthopedic surgeon who knew exactly what he was seeing (chondrosarcoma) and sent me to an ortho oncologist. This resulted in an internal hemipelvectomy with seven recurrences over eleven years. I'm lucky to be alive and doing okay. People didn't have such a high survival rate in the 1960's.

That's why I take such an active role in my health care. I appreciate so much your understanding about my concerns and writing me."

Note to reader: That's why I think it's important to learn everything I possibly can about leukemia. Ah.... a new educational experience in the field of science. Am I up to it? I'm looking forward to learning all those new aspects of science and genetics. Hope I will understand!


Friday

Apology for Nipple Reading

This is what I love about how medicine is being practiced today, as compared to 50 years ago, when this never would have happened. I mean this communication never would have happened because I never would have been privy to the radiologist report. Today, as patients we can be more involved in our own care. But, we do need to be knowledgeable about our bodies and not be lazy by leaving it all up to the medical personnel. Just remember they are human beings, too.

My doctor forwarded on my message to the radiologist where I asked that my xray be reinterpreted and compared to a previous CT scan which shows a nodule in my lung, NOT a prominent nipple.

This is what the original reading said:


PA and lateral chest radiographs are provided.  Well-defined rounded opacity projecting over the right lower lung zone probably represents prominent nipple shadow.  This appears asymmetric compared with the left although, the patient is rotated in position.  


Repeat radiographs with nipple markers in place should be considered for confirmation.  


No focal consolidation or pleural effusion is seen.  Cardiomediastinal silhouette is within normal limits.  No acute bony abnormality is seen.


Mild multilevel thoracic spondylosis is noted.


My Garden Pathway ~ I didn't notice the bird when taking picture!
So, here is the response to my request for a second reading of the "nipple" xray. It was a personal message written to me by the radiologist:


I understand your frustration and I apologize for the error. Unfortunately we have a slight glitch in the PACS system since we have upgraded our system. Patients now have new medical record numbers so the prior studies are no longer loaded automatically. 


The technologist who performed your xray forgot to merge your file so, this was the only image available to me when I read the exam. And, there was no other history than "Cough". If I knew the history of chondrosarcoma, the read would have been very different (see my read on your prior CXR). Additionally, the nodule is not seen on the lateral view because you were slightly rotated. Anyhow, I addended the report after you notified me of the prior exams and I will make sure your file is merged appropriately. 


Again, I apologize and I feel horrible that your faith in physicians has been compromised. But, technical errors do occur in these upgrades and we are doing everything we can to try to avoid this situation in the future.


Now, one might say, oh that's not a good enough excuse. But, I disagree. I know the clinic has been going through computer upgrades to their system. This is no easy job because the clinic is associated with forty seven more clinics. This upgrade is BIG. I can understand how what the radiologist relates in her email to me.

What does bother me is that the tech is the one who "forgot" to merge my file. I remember how sullen and unfriendly she was. When I run into someone like that I give them the benefit of the doubt. I make an effort to make friendly small talk so hopefully it might make a difference in an otherwise not so great day. Of course, I cannot rescue the world, or make xray technicians smile, if that's not going to happen. Life is a two way street. I often find that when dealing with others, if I am kindly, polite and caring, others will behave similarly. So why not make the effort to help make someone else's day a little brighter?

Still, Ms. Xray Technician was sullen and mechanical in her dealings with me. Seemed like maybe she was just totally out of energy and patience. It was late in the day, after all. So I was happy to get out of there as soon as possible. Still I can't complain. She did, at least, let me see the xray when done, but that's the only thing I can give her.

I wrote a message back to the Radiologist who apologized. I will share that tomorrow.

Thursday

When a Nipple is Not a Nipple it's a Nodule

When I discovered the error the radiologist made reading my chest xray, I did a slow burn. Too many times in the past, I have been misdiagnosed, over diagnosed, under diagnosed. You name it!

It's too complicated to go into all the medical error stories right now, but I think I will make a list sometime in the future and post it. This is not a tirade against doctors or medical care. Just a statement of what happens.

I often wonder what happens to other patients who have mistakes on their medical records if they are not the nosy, pushy kind of patient like me. I want corrections when there is a mistake and I will go to lengths to make sure the correction happens, even if I make a fool of myself, even if I am the one who is mistaken. Yes, that has happened too, where I was sure something had been overlooked and I pressed on about it only to learn it was my own error to believe that something was wrong in the first place.

Bless those medical people who have to deal with me. I'm not mean about it. Just "assertive". But, I'm sure their jobs are hard enough!

I have an online account that connects me to the clinic where I can email my doctors. Since the radiologist is not my personal physician, I sent a message to the doctor who had ordered the chest x-ray. This is what I wrote:


Please notify the radiologist, who read my chest xray that the "nipple" showing on my chest xray is not a nipple. Please ask her to compare the xray to the CAT scan of my lungs taken a couple months ago which showed the nodule inside my lung that has been noted before.

For heavens sake, this is why I have difficulty having faith in some doctors. How can I believe that the reading of my xray is accurate at all?

This is exactly what happened in the past when I had large chondrosarcoma tumor growing in my pelvis and it wasn't seen.

I would also like to see the corrected reading.

Thank you

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

Note: I took the photo of the dewdrops on Jasmine in my own back yard shortly after a rain.

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".

Monday

Sick Christmas



Christmas was not too good. Pretty sick.

Had to tell Xaver and Amy to not come for dinner.

I didn't want them to catch what I have, if it is the flu.

Don't know for sure. Might be chemo reaction.

Feeling better today

Kats is taking me out to dinner.

Friday

For Better and Worse

I am feeling better! I got my Guardian Angel to come take care of me that night I was so sick. He drove 57 miles to get here after working a full day. He took care of my every need, by reading the notes I wrote. If I spoke I would cough incessantly! He changed the bed, cleaned the bathroom, held the trash can as I got sick. Oh, I felt so much better after that episode! While I finally lay there in comfort, he did the laundry until 2 am. Then got up at 6 to go back to work again. I couldn't ask for more!

The next day, still sick, but not as bad. Emailed my doctor. His nurse, the one I like, called me to ask questions and let me know doctor had ordered cough medicine with codeine in it to help quell the cough. A neighbor who had seen my posting on facebook volunteered to pick up my prescription. Bless her!

The next day after that I was well enough to have my housekeeper take me to the store to pick up a last minute Christmas gift. I didn't cough once the hour and a half we were gone!. Oddly, by evening the coughing was back again. But, the nausea has not returned.

The coughing does a number on my neck, upper spine and rib cage though. I even heard my neck crack with coughing. Every muscle is sore. I'm using my super duper official medically therapeutic heating pad to help with all that. I don't know what I would do without it. Originally it was ordered for me years ago for arthritis bone pain. I is so large I goes from my shoulders all the way down my back to buttocks. I learned about it from my physical therapist who used it in her practice. Because of the special cover, it produces moist heat. There is a safety feature, too. You have to hold the switch into the on position yourself. That way you can't fall asleep with it on, and burn your skin or over cook your joints.


It heats up real fast and quite high, so, believe me, you don't need to hold onto the switch for very long at all. The heat takes a while to dissipate too. I love it! The only drawback is the price. I don't know if you can get it ordered by your doctor as a prescription, and insurance pay for it. Though, I didn't mind paying for it myself. It has outlasted any small size common plastic heating pad I have ever had by years! Here's the link, if you want to take a look at the site where you can order it. Then click on "Moist Heat Therapy" I like mine the best though. It's model #055, size 14" by 27".

I hope I'm not sounding too whiney and hypochondriacal. But, this is, after all, my journey, the good, bad and ugly. Having the Leukemia may seem to be what it's all about, but it is more than that. The Leukemia and the Chemo will not affect every aspect of my health. And because I already had several underlying conditions before diagnosis, then they are affected at well. I still have so much to learn in how to get things managed and back into balance.

So, the title of this posting is for Better and Worse. I've written about the better. Now for the worse. Or what I think may be the worse.

In January of 2009 I started taking a prescription drug for one of my autoimmune conditions. It is called Cellcept. It is usually what transplant patients take in order to keep their bodies from rejecting their donated kidneys, livers, lungs or whatever. When I first looked at the possible adverse affects of Cellcept I didn't think they were too bad, and was willing to take it even though one of the remote possibilities was Lymphoma. I was desperate and so tired of the battle with my autoimmune disease which had me in it's grip for five years before. I took the Cellcept for 22 months before I needed to stop taking it. Cellcept lowers the immune system and therefore you are more susceptible to infection. I came down with a bad cold and bronchitis at the time. The doctor told me to stop taking it otherwise I would end up with Pneumonia.

So ten months after stopping the Cellcept is when I was diagnosed with the Leukemia. Is there a connection? I don't know for sure. Lymphoma was an expected possibility.

It had not occurred to me until today that maybe there is a connection between Cellcept and Leukemia. To be fair. I don't know that for sure. I hope the company will call me back so we can discuss it.

So let's get back to something better now. How about this picture? Not taken by me, by the way. But, I thought it's nice for this time of year. I've got it on my computer as a desktop background.

Tuesday

Too Much. Too Much

The patient is tired, exhausted really. Sick too. Too cold. Too hot. Nauseated. Unable to eat. Stomach pain, bone pain. Incessant coughing. Why does nothing work to stop it? No pills, no cough syrup, no inhaler or nose drops. Cough, Cough cough. Don't breathe too deeply. Lay still. Don't move. Coughing makes head ache. Makes pounding in the ears. No energy. Hopelessness drags down her spirits.

Unable to care for herself. Lies upon the bed without sufficient clothing. Laundry needs to be done, bathroom needs to be cleaned. Sheets taken from bed.

A bath would be so nice. If only.. if only she felt safe

She feels so sorry for herself and hates it.

Yeah, that patient is me.

Monday

I'm a Patient Woman. However...


Palo Alto Medical Foundation is where I currently go for my medical care. Since the CML diagnosis I have had to work with the situation as best I can. I have lots of experience being a patient. More than most, I would say. So, I believe I have developed a tolerant attitude. 

There are many challenges I have been facing that I find discouraging, confusing and annoying, which I hope to resolve, or just live with. However... sometimes it's the little things that become untenable!

This is the message I sent to the complaint department:

Today I called PAMF in Santa Cruz to report that I had been in the emergency room last night and wanted to know what to do now. It took twenty minutes before anyone answered the phone. 

Two weeks ago I was on hold for 45 minutes before someone answered the phone. 

FORTY FIVE MINUTES!!! 

I CAN DRIVE TO MY DOCTOR'S OFFICE IN HALF THAT TIME!!! 

I have been politely told that people cannot answer the phone because of a computer upgrade. 

GIVE ME A BREAK!!! 

If it is true that having a computer upgrade prevents phone service from working correctly, PAMF has a problem. 

A SERIOUS PROBLEM!!! 

Not just with the phone, you see. But with the whole patient experience. Do you understand? I know two other PAMF patients who are just as fed up as I am. Oh, I know I can send a message to my doctor through My Health Online. But, there is no guarantee the doctor will read it in a timely manner or at all. One of my doctors said he never checks messages. This is not a useful system if the doctor who is the most important in my medical care team does not get the message. 

Still, I sent messages to my primary care and my oncologist. I will wait and see how long it takes to get a reply. But, I don't have a lot of faith in the system. Maybe they will have problems getting online because PAMF is upgrading the computer system! I would prefer to not go doctor shopping while in the middle of my current medical situation... cancer. 

I specifically would like to know exactly how many months this "computer upgrade" will continue to affect the quality of my care, so I can make other arrangements if I find the answer unsatisfactory. At least give me that. 

Thank you for reading my complaint. I look forward to a response by letter soon.

~~~~~~~~~~~~~~~~~
Just for fun, here's a picture of my son on the phone a few years ago, with a much better experience than I am having with the phone today.


Sunday

Today Sucked


Today sucked...
couldn't eat...
tummy awful...
diarrhea...
exhausted...
getting a lot of that from the chemo I guess...

Even though the chemo is just a pill it's doing it's job. I guess.


I occupy myself playing Words With Friends. My son worked on the game producing it to put on facebook. I'm enjoying the game. It's a lot like scrabble. It keeps me distracted from my troubles.

How Did I Get Leukemia?

In some cases of Leukemia the cause is not known.

"Experts say that different leukemias have different causes. The following are either known causes, or strongly suspected causes:


Artificial ionizing radiation

Viruses - HTLV-1 (human T-lymphotropic virus) and HIV (human immunodeficiency virus)

Benzene and some petrochemicals

Alkylating chemotherapy agents used in previous cancers

Maternal fetal transmission (rare)

Hair dyes

Genetic predisposition - some studies researching family history and looking at twins have indicated that some people have a higher risk of developing leukemia because of a single gene or multiple genes.

Down syndrome - people with Down syndrome have a significantly higher risk of developing leukemia, compared to people who do not have Down syndrome. Experts say that because of this, people with certain chromosomal abnormalities may have a higher risk."

from: http://www.medicalnewstoday.com/articles/142595.php

In my case, I happen to believe it is because of exposure to benzene and petrochemicals due to a long term exposure to the toxic waste of the Love Canal located in Niagara Falls, NY where I grew up.

Warning: This video has some hard core music playing with it. So if you don't want to listen turn off the sound. The message is what I'm hoping you will read. The visuals speak for themselves.


Wednesday

Thoughts on My CBC Blood Test Results

I am frustrated.

I have fluctuating feelings about how I am being treated by the doctor. I wonder if I am being hypercritical in my assessment of my relationship with him. I have been trying to put it all into words, cohesive and clear. But my flaky thought processes get in the way. I'm not down on myself when I say flaky. It is what it is... perhaps distracted might be the better description.

Needless to say on my recent visit, I walked away feeling dissatisfied.


Doctor did not release the blood result records to me until after the visit. When he brought them up on his computer he barely showed them to me. I told him I wanted a copy. He went and got a paper copy and waved it in front of my face declaring that my blood results were "normal". While doing so, he acted all happy and excited. I only saw a flash of the paper and didn't get the chance to examine it. But, I did see those warning red marks indicating somethings were not normal.

In the meantime, he says, "I thought you would be more excited about this. Jumping up and down for joy. I'm very happy about this. Why aren't you?"

I told him, "I feel numb. It doesn't seem real to me. Maybe I have been in denial since the beginning. Since my results were so low in the first place, this doesn't seem like a major thing. Plus, there are so many patients who have CML much worse than me. I'm a member of a CML support group and when people are writing back and forth sharing their challenges. Also, I read articles from PubMed and I see the challenging results of others. I feel like a baby if I complain."

I would have said more but he cut me off. "You shouldn't pay attention to what you read in blogs on the internet"

I felt like laughing that he didn't know the difference between a support group and a blog. But, didn't bother to explain it to him. What I did say is, "The PubMed articles I read are from a reputable source, the National Institute of Health Library. These are peer reviewed legitimate articles I am reading."

Getting back to the CBC results. I fail to see how they are considered normal. Granted some of the numbers are very close to normal. But, some are not. And what does that mean in terms of recovery? In particular Lymphocyte result is still less than half of the low normal.

When I asked the doctor why that was so, and what it meant, he said he didn't know. He's a Hemetologist, a blood oncologist. Shouldn't he know?

~~~~~~~~~~~~~
I took the photograph of a part of downtown Santa Cruz, CA at the beginning of Pacific Ave and Front St.

Saturday

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

Friday

CBC Blood Test Results



Component Results

ComponentYour ValueStandard RangeUnitsFlag
White Blood Cell Count4.34.0 - 11.0K/uL
Red Blood Cell Count3.833.90 - 5.40M/uLL
Hemoglobin12.112.0 - 15.5g/dL
Hematocrit38.635.0 - 47.0%
MCV10180 - 100fLH
MCH31.627.0 - 33.0pg
MCHC31.331.0 - 36.0g/dL
RDW14.0<16.4 -  %
Platelet Count376150 - 400K/uL
Neutrophil7649 - 64%H
Neutrophil Bands10.0 - 10.0%
Lymphocyte1226 - 46%L
Atyp. Lymph40 -  %H
Monocyte50 - 12%
Eosinophil00 - 5%
Basophil20 - 2%
Abs. Neutrophil3.32.0 - 8.0K/uL
Abs. Band0.00.0 - 1.4K/uL
Abs. Lymphocyte0.51.0 - 5.1K/uLL
Abs. Atyp. Lymph0.20 -  K/uLH
Abs. Monocyte0.20.0 - 0.95K/uL
Abs. Eosinophil0.00.0 - 0.6K/uL
Abs. Basophil0.10.0 - 0.2K/uL
Differential TypeManual
White Blood Cell MorphologyNormal
Red Blood Cell MorphologyNormal
Platelet MorphologyNormal

General Information

Collected:

12/2/2011 11:47 AM

Resulted:

12/2/2011 3:39 PM

: