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.
Monday
Sick Christmas
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.
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.
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.
~~~~~~~~~~~~~~~~~
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.
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.
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
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?)
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
| Component | Your Value | Standard Range | Units | Flag |
|---|---|---|---|---|
| White Blood Cell Count | 4.3 | 4.0 - 11.0 | K/uL | |
| Red Blood Cell Count | 3.83 | 3.90 - 5.40 | M/uL | L |
| Hemoglobin | 12.1 | 12.0 - 15.5 | g/dL | |
| Hematocrit | 38.6 | 35.0 - 47.0 | % | |
| MCV | 101 | 80 - 100 | fL | H |
| MCH | 31.6 | 27.0 - 33.0 | pg | |
| MCHC | 31.3 | 31.0 - 36.0 | g/dL | |
| RDW | 14.0 | <16.4 - | % | |
| Platelet Count | 376 | 150 - 400 | K/uL | |
| Neutrophil | 76 | 49 - 64 | % | H |
| Neutrophil Bands | 1 | 0.0 - 10.0 | % | |
| Lymphocyte | 12 | 26 - 46 | % | L |
| Atyp. Lymph | 4 | 0 - | % | H |
| Monocyte | 5 | 0 - 12 | % | |
| Eosinophil | 0 | 0 - 5 | % | |
| Basophil | 2 | 0 - 2 | % | |
| Abs. Neutrophil | 3.3 | 2.0 - 8.0 | K/uL | |
| Abs. Band | 0.0 | 0.0 - 1.4 | K/uL | |
| Abs. Lymphocyte | 0.5 | 1.0 - 5.1 | K/uL | L |
| Abs. Atyp. Lymph | 0.2 | 0 - | K/uL | H |
| Abs. Monocyte | 0.2 | 0.0 - 0.95 | K/uL | |
| Abs. Eosinophil | 0.0 | 0.0 - 0.6 | K/uL | |
| Abs. Basophil | 0.1 | 0.0 - 0.2 | K/uL | |
| Differential Type | Manual | |||
| White Blood Cell Morphology | Normal | |||
| Red Blood Cell Morphology | Normal | |||
| Platelet Morphology | Normal |
General Information
Collected:
12/2/2011 11:47 AM
Resulted:
12/2/2011 3:39 PM
:
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