Sunday, December 12, 2010

True Happiness

Dalai Lama: "True happiness comes from having a sense of inner peace and contentment, which in turn must be achieved by cultivating altruism, love and compassion, and by eliminating anger, selfishness and greed."


I know this is true and I know it is a challenge.


altruism: altruism |ˈaltroōˌizəm| nounthe belief in or practice of disinterested and selfless concern for the well-being of others: some may choose to work with vulnerable elderly people out of altruism.Zoology behavior of an animal that benefits another at its own expense.

Compassion: compassion |kəmˈpa sh ən| noun
sympathetic pity and concern for the sufferings or misfortunes of others :the victims should be treated with compassion. See note at mercy.
Love: love |ləv| noun1 an intense feeling of deep affection: babies fill parents with intense feelings of love | their love for their country.a deep romanticor sexual attachment to someone : it was love at first sight | they were both in love with her | we were slowly falling in love.( Love) a personified figure of love, often represented as Cupid.a great interest and pleasure in something : his love for football | we share a love of music.affectionate greetings conveyed to someone on one's behalf.a formula for ending an affectionate letter : take care, lots of love, Judy.2 a person or thing that one loves : she was the love of his life

Monday, October 4, 2010

The Sketchbook Project

I've been keeping sketchbook/journals for years and have always enjoyed creating with pen and ink, pencils, and paint. After I got sick and I retired, I had the time for these more creative pursuits. I started painting with both acrylic and oils and I joined a local art coop. I am starting to show my paintings at some local shows.

The Sketchbook Project challenges me in an even more personal way. It is a traveling art show of sketchbooks that will tour the country and be included in The Brooklyn Art Library collections. It is a chance for my thoughts and sketches reach many people and last a long time (longer than I will live). If you are interested in doing the same, you have until the end of October to participate and until January 15th to complete the sketchbook. For more information visit...

The Sketchbook Project: 2011

Wednesday, April 14, 2010

Inspired lyrics for "Go Do"

I heard a song the other day by Jonsi, who is the lead singer for Sigur Ros (who is awesome). The lyrics are so positive and relevant for these days. I think they are especially relevant for those of us that have an illness.
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Go sing too loud
Make your voice break - Sing it out
Go scream do shout
Make an earthquake...

You wish fire would die and turn colder
You wish your love could see you grow older
We should always know that we can do anything

Go drum do go out
Make your hands ache - Play it out
Go march through crowds
Make your day break...

You wish silence released noise in tremors
You wish I know it surrender to summer
We should always know that we can do everything

Go do you´ll know how to
Just let yourself fall into landslide

Go do you´ll know how to
Just let yourself give into low tide

Go do!

Tie strings to clouds
Make your own lake - Let it flow
Throw seeds to sprout
Make your own break - Let them grow

Let them grow (Endless summers)
Let them grow (Endless summers)

(Go do endless summers)

You will survive we´ll never stop wonders
You and sunrise will never fall under

You will survive we´ll never stop wonders
You and sunrise will never fall under
We should always know that we can do anything

Go do!



-- Posted From My iPhone

Tuesday, April 13, 2010

The iPad Review

I'm not one to post about technology, but I do appreciate the technological advances made by Apple Computer. Apple observes what works and what doesn't (tablet PC and net book) and is able to imagine new ways for technology to enrich our lives. They put their amazing engineers to work and define new ways for us to work and play.

Introducing the iPad. It is everything that I wished my Amazon Kindle had been before I quit using it. I bought the Kindle hoping that it would solve several specific problems I had with reading.

My illness has caused significant carpal tunnel syndrome in both wrists. I have numbness and weakness which makes it difficult to hold books, especially if they weigh anymore than a light magazine. Reading in bed is nearly impossible because of these problems.

I also want to be able to read lengthy medical PDF files without managing unwieldy printouts. I dislike wasting paper and trees on something I may read only once.

I hoped the Kindle would also address my poor eyesight. The common text size of many books cause eyestrain and fatigue. Larger text might help.

My great hope was that the Kindle DX would solve my reading problems. At first I was satisfied with the DX, but soon the slight irritations I experienced began to grow into bigger irritations. Eventually I stopped using it altogether.

What was the problem? The DX was too heavy and designed so poorly that I couldn't compensate for the extra weight by resting it comfortably on my belly. There were buttons right where your hands needed to be for extra support. The bottom of the unit had the plug zone and buttons that made it uncomfortable on your belly for any length of time.

The PDF reader did not allow modification of the text in any way. For example, I couldn't zoom in to a small text box to see the details. I also found the highlighter to be buggy, along with the unit itself, especially if you forgot to plug it in for any length of time. The text size worked great for me but could have gone larger for others with more significant vision issues. I eventually stopped using the Kindle DX.

Enter the iPad into my life. I've been using it a few days. It rests so comfortably on my lap and seems lightweight compared to the DX. It also includes a wide black band around the entire screen that has no buttons. The one exception is one button at the bottom of the screen that changes applications or brings up the search window.

So far, it is very easy to rest the unit in my lap, on one knee, or my belly. My hands hardly have to hold the unit at all and when I do hold it for any significant time the black band allows me to change my finger positions enough to avoid hand fatigue. It is also very comfortable to hold in one hand.

It handles text beautifully. There are several fonts to select depending upon your reading preferences. You even have a option for a sans serif font if that is easier on your eyes. Neither the iPad nor the Kindle have font sizes that that get large enough for vision impaired individuals. However, the iPad allows the user to zoom in on text, both as a regular option in most software as well as through the accessibility settings. There is also the option to speak text for vision impaired users but I found it very distracting on both the Kindle and the iPad.

In terms of durability only time will tell. If the iPhone is any guide the iPad should be well built. My friend just dropped her iPhone into a flushing toilet and it worked just fine after it dried!


-- Post From My iPad

Thursday, May 7, 2009

Up all night

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, 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.

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.

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

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.

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!