It seems like I miss about half the time in any given month. I don't mean through sleeping but rather feeling wiped out from the chemo or recovering a stable blood pressure or something else between each 4 week phase. It seems like I spend at least two weeks either resting, sleeping, feeling actively bad, or being dizzy and nauseated. That leaves less time for planting and planning and enjoying life with my family.
Today it has been one week since I started chemo for this month and I am having an odd reaction. I can't sleep and am wide awake. Maybe it is the steroids, but I keep thinking about what plants I want to get planted and where I will put them. I am thinking about some additional fencing that we could set up so in order to raise a few chickens. How wonderful the insect eating, the manure, and the eggs!
I decided to give up "trying" to sleep at about 2 am and instead got up to write some of these ideas down. That's what I've been doing for the last several hours. Now I just need some daylight and some internal energy to get some things done. What joy!
Our yard is so beautiful. It is a continuing inspiration and we have much to be grateful for and proud of. It is a work in progress that expresses our joys in life. It pours our love into the earth and reflects the love back at us each season.
It's 4:30 am and there are stirrings of cars and even a few birds and dogs bark. Finally my skin is feeling cool with wind from the ceiling fan. Do you suppose I could rest now? I think we should go ahead and get another shade tree for the backyard... but it can wait.
Thursday, May 7, 2009
Thursday, April 2, 2009
Great Cartoon explains Amyloidosis
This cartoon could save the life of someone you love through early diagnosis. Please take the short time to view it. It very well done.
Amyloidosis Awareness from Cartoon Medicine on Vimeo.
Amyloidosis Awareness from Cartoon Medicine on Vimeo.
March Medical Update
Its been a challenging but rewarding month ending on a fantastic note! The really great news was provided by my cardiologist who called and left a message about my recent echocardiogram results. My heart is improving! How about that! My pulmonary lung pressure has improved as has the heart's right side pressure. In addition, one of the leaky valves is not leaking anymore. I can hardly believe it -- it is so wonderful and I am so thankful.
After chemo, I generally look forward to feeling good for a couple of weeks. This last month was filled with challenges instead. I had to fight with my insurance company, who refused to pay for one of the meds my rheumatologist prescribed. Instead they wanted me to try the cheaper drugs first. I tried two of them. One of those drugs shut down my digestive system and that makes you feel awful. The other made my heart beat irregular. Now they want me to take two others related to the drug I couldn't tolerate. I have to appeal if I want them to pay for what the doctor prescribed.
I decided to pay the 200.00 for the 30 day supply of the medication my doctor originally prescribed to see if it is worth the trouble to appeal. So far it is improving the quality of my life. I typically wake up earlier and have energy for gardening, yard work or what ever the day offers. Shouldn't the decision about what drugs I take be up to me and my doctor?
This month I am taking my chemo with the tangible proof that the treatment is working. Taking the chemo feels differently this time.
After chemo, I generally look forward to feeling good for a couple of weeks. This last month was filled with challenges instead. I had to fight with my insurance company, who refused to pay for one of the meds my rheumatologist prescribed. Instead they wanted me to try the cheaper drugs first. I tried two of them. One of those drugs shut down my digestive system and that makes you feel awful. The other made my heart beat irregular. Now they want me to take two others related to the drug I couldn't tolerate. I have to appeal if I want them to pay for what the doctor prescribed.
I decided to pay the 200.00 for the 30 day supply of the medication my doctor originally prescribed to see if it is worth the trouble to appeal. So far it is improving the quality of my life. I typically wake up earlier and have energy for gardening, yard work or what ever the day offers. Shouldn't the decision about what drugs I take be up to me and my doctor?
This month I am taking my chemo with the tangible proof that the treatment is working. Taking the chemo feels differently this time.
Thursday, February 5, 2009
Green Tea Blocks Benefits Of Velcade Cancer and Amyloidosis Drug
Since I have occasionally suggested Green Tea from the benefits I have received, I thought it was important to get this information out quickly. Of course, please speak with your doctors before starting any complementary treatments and share new research with them such as this. This research indicates that green tea cancels out the benefits of Velcade (bortezomib) and other boronic acid-based proteasome inhibitors. I'm not sure what these are. Regardless, I am considering stopping my green tea consumption.
Unfortunately I don't have access to the full text of the journal article yet and only can access the abstract. As a result I could not find out how the green tea was administered (pill vs. drinking), and if it was administered during the chemo treatment (i.e. with the Velcade or only during the non-chemo days). If anyone has access to the article and can provide this information I would be interested.
After discussions with my oncologist, I did not take the green tea pills, or take green tea during the chemo treatment days (waiting at least 3 days on either side of the treatment). Now I wonder if I should wait until I stop chemo (if and when that happens). I believe my doctor was concerned not to overtax the kidney, since the Melphalan is processed through the kidneys. I don't know about the Velcade.
Talk to your oncologist first and share this new information! The information on the research is below. There sounds like there will be some new research on green tea helping treatment in the future and I will be looking forward to that research as well.
-----------------
ScienceDaily (2009-02-05) -- Contrary to popular assumptions about the health benefits of green tea, researchers have found that the widely used supplement renders a cancer drug used to treat multiple myeloma and mantle cell lymphoma completely ineffective in treating cancer.
The research findings are part of a larger project run by the team called "Yin-Yang Properties of Green Tea Extract in Combination Cancer Chemotherapy: From Encouragingly Beneficial to Dangerously Detrimental."
"Obviously, the combination of GTE or EGCG with Velcade is an example of 'dangerously detrimental,' "Schönthal says. "But we are also studying another well-established chemotherapeutic drug, where the inclusion of EGCG appears to yield an 'encouragingly beneficial' outcome, which is more in line with our original expectation that GTE should be beneficial, not detrimental."
Access the science daily post at:http://www.sciencedaily.com/releases/2009/02/090203162355.htm#
The Blood Journal reference:
Encouse B. Golden, Philip Y. Lam, Adel Kardosh, Kevin J. Gaffney, Enrique Cadenas, Stan G. Louise, Nicos A. Petasis, Thomas C. Chen, Axel H. Schönthal. Green Tea Polyphenols Block The Anticancer Effects of Bortezomib And Other Boronic Acid-Based Proteasome Inhibitors. Blood, Feb 3, 2009 DOI: 10.1182/blood-2008-07-171389
Update Feb. 7th:
Thanks to the International Myeloma Foundation for making this article available at:
http://myeloma.org/main.jsp?source=link&source_link_id=3793&type=article&tab_id=1&menu_id=0&id=2511
Unfortunately I don't have access to the full text of the journal article yet and only can access the abstract. As a result I could not find out how the green tea was administered (pill vs. drinking), and if it was administered during the chemo treatment (i.e. with the Velcade or only during the non-chemo days). If anyone has access to the article and can provide this information I would be interested.
After discussions with my oncologist, I did not take the green tea pills, or take green tea during the chemo treatment days (waiting at least 3 days on either side of the treatment). Now I wonder if I should wait until I stop chemo (if and when that happens). I believe my doctor was concerned not to overtax the kidney, since the Melphalan is processed through the kidneys. I don't know about the Velcade.
Talk to your oncologist first and share this new information! The information on the research is below. There sounds like there will be some new research on green tea helping treatment in the future and I will be looking forward to that research as well.
-----------------
ScienceDaily (2009-02-05) -- Contrary to popular assumptions about the health benefits of green tea, researchers have found that the widely used supplement renders a cancer drug used to treat multiple myeloma and mantle cell lymphoma completely ineffective in treating cancer.
The research findings are part of a larger project run by the team called "Yin-Yang Properties of Green Tea Extract in Combination Cancer Chemotherapy: From Encouragingly Beneficial to Dangerously Detrimental."
"Obviously, the combination of GTE or EGCG with Velcade is an example of 'dangerously detrimental,' "Schönthal says. "But we are also studying another well-established chemotherapeutic drug, where the inclusion of EGCG appears to yield an 'encouragingly beneficial' outcome, which is more in line with our original expectation that GTE should be beneficial, not detrimental."
Access the science daily post at:http://www.sciencedaily.com/releases/2009/02/090203162355.htm#
The Blood Journal reference:
Encouse B. Golden, Philip Y. Lam, Adel Kardosh, Kevin J. Gaffney, Enrique Cadenas, Stan G. Louise, Nicos A. Petasis, Thomas C. Chen, Axel H. Schönthal. Green Tea Polyphenols Block The Anticancer Effects of Bortezomib And Other Boronic Acid-Based Proteasome Inhibitors. Blood, Feb 3, 2009 DOI: 10.1182/blood-2008-07-171389
Update Feb. 7th:
Thanks to the International Myeloma Foundation for making this article available at:
http://myeloma.org/main.jsp?source=link&source_link_id=3793&type=article&tab_id=1&menu_id=0&id=2511
Wednesday, February 4, 2009
February Medical Update & new links
I saw both the oncologist and the rheumatologist yesterday. Good news from both of them. My Free Light Chain numbers are still going down, although not as dramatically as in the beginning. My Lambda was up at 30 at one point, so seeing it at 4.67 is great (normal is 0.57-2.63) . In other words, I am still making good progress reducing the amount of amyloid being produced in my body.
Although my heart's NT Pro BNP came up slightly, my energy level and improved heart symptoms indicates the heart has improved. There is some controversy anyway about using NT Pro BNP as a marker for how the chemo is working so my energy level and reduction in heart failure symptoms are probably the best markers. We aren't sure how the kidney's may have improved but may do one of those 24-hour urine tests soon. Thank god for my oncologist!
I am so grateful to have found my rheumatologist and know there are reasons for my pain. Apparently there are areas where amyloid can build up in connective tissue and in bones. There is an arthritis that is associated with the build up of amyloid.
My rheumatologist suggested physical therapy for me. I am scheduled for my first treatment mid month. I am really looking forward to it! A friend that found me through one of the amyloidosis lists and has similar issues found physical therapy very helpful so I am looking forward to it. It appears that I don't have the bone pitting that seems associated with the arthritis like symptoms that amyloid can produce, but I do the soft tissue problems with connective tissues and inflammation. I also have bursitis in the hips that the first steroid shots in my hips helped.
I have some links to share. First are guidelines for identification of systemic amyloidosis organ and soft tissue involvement, and criteria for remission that the experts put together at the big conference in France a few years back. Although it came out in 2005, they are being circulated on the lists as the latest thing on the criteria for remission. I thought it was interesting and had some information that I was not familiar with. If interested, you can download a PDF at the link below (It automatically downloads it).
http://www3.interscience.wiley.com/cgi-bin/fulltext/110573875/PDFSTART
Next is a link to Chris' Journey and fundraising for the Amyloidosis Foundation. A nice article about the bike ride Chris' son is doing to raise awareness can be found at:
http://www.metrowestdailynews.com/news/x1556828605/Spitz-Son-is-riding-for-moms-life
You can read about the ride at:
http://chrisjourney.com/
Stay healthy my friends! I'll tell you all about the new puppy in another post.
Although my heart's NT Pro BNP came up slightly, my energy level and improved heart symptoms indicates the heart has improved. There is some controversy anyway about using NT Pro BNP as a marker for how the chemo is working so my energy level and reduction in heart failure symptoms are probably the best markers. We aren't sure how the kidney's may have improved but may do one of those 24-hour urine tests soon. Thank god for my oncologist!
I am so grateful to have found my rheumatologist and know there are reasons for my pain. Apparently there are areas where amyloid can build up in connective tissue and in bones. There is an arthritis that is associated with the build up of amyloid.
My rheumatologist suggested physical therapy for me. I am scheduled for my first treatment mid month. I am really looking forward to it! A friend that found me through one of the amyloidosis lists and has similar issues found physical therapy very helpful so I am looking forward to it. It appears that I don't have the bone pitting that seems associated with the arthritis like symptoms that amyloid can produce, but I do the soft tissue problems with connective tissues and inflammation. I also have bursitis in the hips that the first steroid shots in my hips helped.
I have some links to share. First are guidelines for identification of systemic amyloidosis organ and soft tissue involvement, and criteria for remission that the experts put together at the big conference in France a few years back. Although it came out in 2005, they are being circulated on the lists as the latest thing on the criteria for remission. I thought it was interesting and had some information that I was not familiar with. If interested, you can download a PDF at the link below (It automatically downloads it).
http://www3.interscience.wiley.com/cgi-bin/fulltext/110573875/PDFSTART
Next is a link to Chris' Journey and fundraising for the Amyloidosis Foundation. A nice article about the bike ride Chris' son is doing to raise awareness can be found at:
http://www.metrowestdailynews.com/news/x1556828605/Spitz-Son-is-riding-for-moms-life
You can read about the ride at:
http://chrisjourney.com/
Stay healthy my friends! I'll tell you all about the new puppy in another post.
Tuesday, January 6, 2009
Happy 2009! Change in health and attitude
The last few months have brought a change in health, and attitude. Thankfully we have a new administration coming into the White House in only a few weeks. The first African American president is holding the hopes of so many in his hands. We want so much for him to be a different kind of man, of politician. What huge responsibility sits on his shoulders. Our world is in such trouble and we need help badly. He needs to be our hero -- I think that he can be both a man and our hero.
I am on a more aggressive treatment now, which is what a lot of patients are doing now for Amyloidosis. It is a combination of Dexamethsone (every 4 weeks, for 4 days) and Melphalan (every 8 weeks with the dex). I have had a nice reduction in the free light chains in the blood (13.00 to 5.34 lambda, normal is 0.57-2.63). My NT-ProBNP has gone down from 3900 to 2360 (normal is 0-125). That is all really good news. I need to talk with the oncologist about what seems to be a plateau in the last couple of blood draws and the lambda free light chains. I wonder about being a little more aggressive in treatment if I don't see more normal readings. Of course with that comes more side effects, some of which are even worse on hearts.
Garden update: We ate some amazing spinach from the garden (planted in September), saved through the cold with frost blankets. The spinach was so sweet... even here in January. I was shocked at the taste of fresh spinach. It is so tasty, and must loose it's flavor rapidly because it taste nothing like store-bought. I am also planning to start seeds inside toward the end of the month - mostly so flowers at this time.
I've discovered another "complementary therapy" that I recommend for anyone going through a difficult time. I am working with an old friend of mine who is a personal coach. She has her certificate from a coaching school. Sometimes you hear these folks called executive coaches, but certainly I am not an executive. I'm finding it so helpful! Once a week we talk on the phone and she helps me sort out my thoughts and feelings so easily and in such a short time. It is so helpful to have scheduled time to do this! It gives me a week to reflect and take notice about my progress, resistance, or changing perspective. I recommend coaching with someone who has gone through the training. It is been hugely helpful to me so far.
Thats all for now. I am on day 2 of the Dex and Melphlan and it causes fatigue to hit you suddenly. At least it does for me. It's like the dex gives you a lift but then the fatigue takes over.
Best wishes for a joyful, healthy, and love filled year to all who pass by here!
I am on a more aggressive treatment now, which is what a lot of patients are doing now for Amyloidosis. It is a combination of Dexamethsone (every 4 weeks, for 4 days) and Melphalan (every 8 weeks with the dex). I have had a nice reduction in the free light chains in the blood (13.00 to 5.34 lambda, normal is 0.57-2.63). My NT-ProBNP has gone down from 3900 to 2360 (normal is 0-125). That is all really good news. I need to talk with the oncologist about what seems to be a plateau in the last couple of blood draws and the lambda free light chains. I wonder about being a little more aggressive in treatment if I don't see more normal readings. Of course with that comes more side effects, some of which are even worse on hearts.
Garden update: We ate some amazing spinach from the garden (planted in September), saved through the cold with frost blankets. The spinach was so sweet... even here in January. I was shocked at the taste of fresh spinach. It is so tasty, and must loose it's flavor rapidly because it taste nothing like store-bought. I am also planning to start seeds inside toward the end of the month - mostly so flowers at this time.
I've discovered another "complementary therapy" that I recommend for anyone going through a difficult time. I am working with an old friend of mine who is a personal coach. She has her certificate from a coaching school. Sometimes you hear these folks called executive coaches, but certainly I am not an executive. I'm finding it so helpful! Once a week we talk on the phone and she helps me sort out my thoughts and feelings so easily and in such a short time. It is so helpful to have scheduled time to do this! It gives me a week to reflect and take notice about my progress, resistance, or changing perspective. I recommend coaching with someone who has gone through the training. It is been hugely helpful to me so far.
Thats all for now. I am on day 2 of the Dex and Melphlan and it causes fatigue to hit you suddenly. At least it does for me. It's like the dex gives you a lift but then the fatigue takes over.
Best wishes for a joyful, healthy, and love filled year to all who pass by here!
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