Eleanor “E” or “Easy E” Alston
E was a campselor at my at my First Descents (FD) 09 camp. She picked me, No-Mo Chemo Man, Scrappy and Worm up at Boise airport. As a brain cancer survivor, I had struggled in my 08 camp just staying up in the boat. As we were driving through Boise, she explained that she earned the nickname “Easy E” in her First Descents 08 camp because she did so well in the kayak, like she was a natural. I’d seen that the year before in a couple of campers. Now I was back to learn to roll and just be better at kayaking, and she was back to shadow people like me on the river and teach us how to paddle. She told me she was an IBC survivor. The subject of nutrition came up when I offered her one of my cookies. She politely refused, explaining that she was on a diet specifically designed to prevent blood sugar spikes. I explained I had developed the recipe when I was on chemo because a side effect of the brain cancer drug I was taking was elevated cholesterol. When I told what was in the cookies, she concluded my recipe was low Glycemic Index and okay for her to eat. It turned out we were both staunch believers in the healing power of nutrition. Right off we had being food nerds in common. It ended up that what I learned from E about Glycemic Index became a cornerstone of my marketing strategy when I decided to go into the cookie business with my recipes. The day I gave her that cookie, it really meant a lot that told me she loved it.
Our first day on the water consisted of E, her husband Hyou and the rest of the FD volunteers fitting us in boats, getting us used to the inevitability of being upside down in the water, and then pounding us during spirited if not gracefully executed game on the Kayak Polo pitch. The next day, we were out on the river and I didn’t see much of E because she was working with other ducklings (novice kayakers). I imagine E was an encouraging force out there, not only just by physical example, but because she had major cancer credentials. The disease she was battling, IBC, is a very bad one, yet there she was she was on the river making it happen for her and for us. She taught, and helped rescue campers that had abandoned their kayaks in the rapids. The next three days on the Middle fork of the Payette provided plenty of challenge for us campers. Hyou and a few of the other volunteers patiently coached me on rolling my kayak during the lunch breaks.
I taught Tai Chi in the mornings. Hyou and E made it for a few mornings together and then for one or two Hyou was there alone. E needed rest, she was tired. Learning this was the first inkling I got that this camp was as much a physical challenge for E as it was to the rest of us. Despite her acumen, she had been through intense treatments and was tired. I had developed this image her, that she was so strong and good at kayaking, that I didn’t imagine she needed rest, that she was vulnerable. Part of this image was her grace as well as her skill. She was LIVING. She didn’t have time to complain, even when a piece of her front tooth broke off out on the river. She just kept going. It was one of her front top center teeth.
E was a very beautiful woman - yet vanity was in no way a hang-up for her. But it couldn’t have been easy for her looking in the mirror and seeing that broken tooth. It was a sign of the wear her treatments had exacted on her body. It was a chink in the armor.
E and Hyou loved to drive across the country and that’s how they had come to the camp from Omaha. They were able to stay an extra day after the rest of us left. They ran with the big dogs on that day. The North Fork of the Payette with Fro and Thrifty. That’s category 4-5 water; “busy” is the euphemistic term whitewater enthusiasts use to describe such a stretch of river. I remember seeing that fork on the first day on our way up to our base house from the airport. I was sitting next to E in the front seat of her van thinking, “Oh my God, I hope we’re not gonna be on that water.” E and Hyou did kayak the North Fork of the Payette. From what I heard, they held up for a respectable stretch, but that water taught them a thing or two in return.
In October of 2009 we had the pleasure of a visit from the Alston Clan plus Cara (Couch Potato) Stirts. They were out for the Kayak Polo Nationals (Internationals really) in Los Angeles. E was a force to be respected out on the pitch. Hyou and Megan played as well. Cara had driven out with E and the girls and was still working on rolling. Cara, a lawyer was on vacation from her court internship. One of the things that impressed me about her was that she was such a good friend and that E and the Alstons meant very much to her. Cara’s loyalty spoke to the quality of the Alstons as a family and as people in general. I truly enjoyed eating fish tacos with this tribe when they spent the night. When it was time for them to move up to Northern Los Angeles County to play in the Nationals my wife and I wished we could have had them around the house longer.
We got our wish when they were able to stop back by on the way out to Omaha. Everyone was in high spirits. I was left with such a loving and positive impression of the whole group. The girls, who had been living with the knowledge that their mom was fighting a deadly disease for two years, were exemplary humans. They got along so well and were great to have around the house. It really cemented my admiration and love for E and Hyou seeing how great of a job they were doing raising their daughters. I’m always grateful when I meet parents that manage to strike that balance, where the kids are able to interact on a mature and loving level. It gives me hope for the future when adults are willing and capable of providing the love in all of its forms. When children are this well mannered, it means that the parents are not afraid to set limits, yet not excessive in discipline. That they’re teaching love.
In the middle of March 2010, I participated in my second St Baldricks fundraiser. I had been growing my beard for a year in anticipation of shaving to raise money for pediatric cancer research. The Alstons were among the people I asked to contribute my campaign. I looked at my fundraising page after the shaving event and found a $5 donation from the Alstons with a note explaining that the treatments E was going through had been very costly and money was tight, but that their youngest daughter "J" had received $5 from her Nana as a gift and she decided she wanted to support what I was doing with that money instead of spending it on some thing for herself. What she really wanted was to help find a cures for cancer. So she asked E and Hyou to send me her $5. I was in tears as I read, knowing that despite the trials this family I had grown to love were going through, even the youngest among them was a generous and selfless soul. J was 7 years old when she made that decision. I had people donate 20 times that amount to my campaign, and it meant a lot to me, but Jillian’s donation was the one I will never forget. It embodied the essence of the Alstons. How could I not love them?
In October of 2010 E, Hyou and the Family were back for the Nationals again with Cara. Cara was a stronger kayaker, having nailed her roll. Megan was playing in the nationals in her age bracket, Hyou was playing, but E, who had qualified for the national women’s national team earlier that year had begun to struggle with chest pain and breathing. It was the IBC. She was unable to compete, and while she whole-heartedly cheered her friends and family, it couldn’t have been easy at times. Just as it was in camp when she broke her tooth and fought fatigue, E handled this new reality with grace, courage and strength. She sat at our dining room table talking with us, aware of her circumstances, yet strong enough in her self to enjoy just being with us.
The journey from October 2010 until she left in early September 2011 was inspiring, yet increasingly difficult for me to watch. I saw it though Facebook and blogs. E never stopped serving her community by providing nutritional knowledge and mentoring other cancer survivors. She had so much love for those around her, so many reasons to want to stay around, so much passion for her fight. She was an excellent resource for many people in the breast cancer community and for all of us who met her through First Descents. Ever since I met E and Hyou and their first visit to the West Coast, I struggled balancing my admiration and love for her, for all of the Alstons really, and that angry child part of me that never accepted that the cancer she was fighting might be just too relentless to overcome. Somehow E would stay with us because that was just what should be. I thought about the Alston family every day, literally. It was a struggle for me knowing how difficult things were for them, but I never stopped focusing on their best possible outcomes. E’s vast reserve of love, resolve and resilience elevated her to the unequivocal status of my heroine. We always want our heroes and heroines to be what they mean to us, who we imagine they are.
The last time I spoke with E she shocked me by telling me I was her hero. I was stunned hearing this from someone I held in such high regard. I suppose our stories have their similarities. We both were dealt some pretty difficult cards. We were both motivated people who sought out knowledge and wellness. We both were passionate about nutrition and serving our fellow humans. We were both empowered. Mostly, I think, our common bond was our unwillingness to let circumstance master our minds and our actions. We pursued our ways to fight for our families and leave legacies by positively impacting our respective circles of humanity.
I could wallow in sadness and mourning for E, and for so many other cherished friends and family I can no longer call on the phone, but that’s not what she or they would want. She would want me to celebrate her life by doing. It was my doing that she probably found heroic anyway - so I will. I will continue to try and emulate what I imagine a person I held in such high regard thought was my essence. For now I take heart in knowing that she taught her family what love is, what strength is and what passion is.
Peace, Light and Blessings to all who celebrate the good fortune of having know Eleanor “Easy E” Alston. We celebrate, we mourn, we love. We were damn lucky to get to know her.
Richard (NoMo Chemo Man) Harvey
Sunday, September 18, 2011
Thursday, July 7, 2011
Sometimes It's Hard to make lemonade
A friend of mine recently died. She was about my age, and had been battling brain cancer as long as I have. I only met her once in person, in Florida. She connected with my poetry and hooked me up with some publication opportunities. They were not for prissy Ivy League college journals. She got me published in a fairly hardcore mag, along side tattooed Rubinesque vampire chicks and hardcore satanic metal bands. My friend liked hardcore. She wrote some pretty intense stuff, snuff stories and such. That was just one of her facets.
In the brain tumor world, she assisted, encouraged, and pointed thousands of people in the right direction. She was kind and generous, always doing for others. She put off radiation until it was truly a last resort. I worried her decision would lose her to us too soon. Maybe it did, and it doesn't matter, because, really, now it just sucks that she's gone.
This is what happens when people cannot get access to the help they need when they get sick. The reason I say this is because before she got sick, she worked for a business whose owners embezzled payroll taxes. So when she applied for social security , she was denied Social Security Disability and Medicare. There wasn't a thing anyone would do about it. As exhaustive a researcher as she was, she never cracked that nut. She had Medicaid, and the family, beaten down by the recession (depression) skated along the edge all through the last years and days of her life. I never could get over how unfair it was that she couldn't ever get Medicare, and I did, and still do have it. And it wasn't because she didn't work, it was because her bosses were assholes, and her safety net had some pretty big holes in it.
As we debate national health care, think about people like my friend, who never really got a fair shake. She got herself into numerous clinical trials, but how much of the gold standard treatment she needed did she miss? A lot, I would expect. She liked the idea of possibly helping the others by participating in clinical trials.
I miss her, I miss the way she posted cool music videos on Facebook, her passion for intense poetry, the way she spread so much love. I just can't help focusing on how unfair it is that she never had access even to a meager safety net that she really deserved, and no one was able or at least willing to help. There are two kids who have lost their mother and a man who lost his true love. They're probably glad she's not suffering, but still, it's all so sad.
Where do we draw the line on promises to our own people? Niki didn't get to step past our line in the sand. We've lost her and we're angry.
In the brain tumor world, she assisted, encouraged, and pointed thousands of people in the right direction. She was kind and generous, always doing for others. She put off radiation until it was truly a last resort. I worried her decision would lose her to us too soon. Maybe it did, and it doesn't matter, because, really, now it just sucks that she's gone.
This is what happens when people cannot get access to the help they need when they get sick. The reason I say this is because before she got sick, she worked for a business whose owners embezzled payroll taxes. So when she applied for social security , she was denied Social Security Disability and Medicare. There wasn't a thing anyone would do about it. As exhaustive a researcher as she was, she never cracked that nut. She had Medicaid, and the family, beaten down by the recession (depression) skated along the edge all through the last years and days of her life. I never could get over how unfair it was that she couldn't ever get Medicare, and I did, and still do have it. And it wasn't because she didn't work, it was because her bosses were assholes, and her safety net had some pretty big holes in it.
As we debate national health care, think about people like my friend, who never really got a fair shake. She got herself into numerous clinical trials, but how much of the gold standard treatment she needed did she miss? A lot, I would expect. She liked the idea of possibly helping the others by participating in clinical trials.
I miss her, I miss the way she posted cool music videos on Facebook, her passion for intense poetry, the way she spread so much love. I just can't help focusing on how unfair it is that she never had access even to a meager safety net that she really deserved, and no one was able or at least willing to help. There are two kids who have lost their mother and a man who lost his true love. They're probably glad she's not suffering, but still, it's all so sad.
Where do we draw the line on promises to our own people? Niki didn't get to step past our line in the sand. We've lost her and we're angry.
Thursday, February 10, 2011
A Letter to Vanessa
Hello Loyal Blog followers. I have included a letter I recently sent to someone who is supporting a brain tumor survivor. It is a pretty comprehensive listing of the modalities I have used in my healing.
Hi Vanessa,
I hope today you are feeling better. I am almost a 6-year PXA survivor. PXA is a form of AA3. I was fortunate in that the tumor was in my right temporal lobe region of my brain, so I did not have a lot of language issues compared to what your mom has experienced. I have some recommendations. In terms of quality of life for both of you, your major issue seems to be fear. It is understandable. We all have to take stock in these situations and figure out what we can have influence over and what we cannot. Those things we can change, we pick, hopefully one at a time, and resolve them. For those that we cannot, we have two major choices. Do we dwell in fear or do we give it up to our higher power (it seems you are a believer)? Living in fear is not going to make what time you have very pleasant. It is a choice. I don't recommend it if you want decent quality of life. While it might seem like you cannot control this tendency, really there are tools that work quite well. Mainly what my wife and I have done is carefully define what we want in our outcomes and then begin to imagine how we will feel when we get what we want. It's called The Universal Power of Attraction. A couple of good movies for both of you to watch right now would be The Secret and What The Bleep? They are both pretty good guides on how to manifest your desired outcomes. Focusing on what you want it a tool, initially, for re-occupying your mind with what you want in it, therefore taking power of your time. It is like meditating. Not always the easiest to stay focused while the Monkey Mind tries to fill you with dread or whatever is counter-intuitive to your peace of mind. And teachers of meditation tell us, when the random distracting thoughts come to us, just to embrace them and let them go and return to focusing on what you want. It is a discipline, one that takes time to master but one that will also keep you reoccupying your mind with what you want, not what you don't. And what is the difference, in terms of defining your focus, between what you want and what you don't? In simple terms, here are two possible ways of thinking. 1. "I don't want my mother to get sicker, lose it, fall apart and die." 2. "I want my mother to enjoy life and continue to feel better." You could focus on either one, and I suppose they mean kind of the same thing, but really they're universes apart. Focusing on 1 will make you feel like crap, lose hope and, in my belief system, will attract exactly what you don't want. Focusing on 2 will make you feel better, especially if you put your imagination to work on how great it will feel when those things come to pass. Feeling better in the moment is a keystone of improving your quality of life, and that of your mother. Here is a link to some of my poems that were published online back when I was in my first year of treatment. I hope they help you to feel better: http://www.oncolink.org/coping/article.cfm?c=6&s=31&ss=74&id=1015
Other things to consider. Alternative treatments that work: Acupuncture and Herbs have been very helpful to me. I fought with my insurance company to get this covered and won. The best way to get this is to go through a pain management doctor. The key thing you ask for are help with fatigue, nausea and pain. These are the areas the western medical gatekeepers will accept as viable reasons for acupuncture and herbs. They are not nearly all the cancer related issues that these modalities can help with. For instance I never had issues with my blood work during my two years of chemotherapy, and I know that this modality made a huge difference there. An acupuncturist/OMD will know way more about nutrition than a western medical practitioner. It is a much more holistic approach. Nutrition is KEY to healing. It's not uncommon for Western medical practitioners to believe there is no need to alter diet during BT treatment, and for cancer in general. There are a number of ingredients common in the food supply that are really good for helping cancer to grow. The big ones are refined white sugar, white flour, high fructose corn syrup, and excessive fat, especially non-organic fat. An acupuncturist will encourage you to eat what is best for your healing, and the dietary suggestions will vary as you move through healing. Whole foods are important.
A second modality is marijuana. Recent studies have proven that certain chemicals in marijuana help to kill cancer. Not only does it help relieve the symptoms of having cancer and resulting from western medical treatment modalities, it really does help to kill cancer. It works, and it’s time for our governments to fully embrace this as a treatment modality for cancer, and for many other diseases. While I cannot cite specific studies, I know that Marijuana has worked well specifically for brain tumors. I am living proof, and hey, apparently it hasn’t diminished my ability to communicate, and I’m almost 6 years in with no recurrences so far.
Exercise is key to wellness too. Research has clearly linked language acquisition, especially in relation to grammatical structure, to exercise. This is one of the reasons physical education is so important for children. It should work the same for adults who are trying to re-acquire language. In addition, exercising consistently helps just about anyone to feel better. Any person in treatment for cancer should try and exercise. It releases endorphins, which is good, and it keeps the body strong.
New learning is very helpful for re-establishing neuropathways damaged by radiation therapy. A way to connect exercise and new learning is to take a class. While in treatment I studied to become a certified Tai Chi instructor. I had learned a few forms in the 20 years before I was diagnosed with brain cancer, and relearning them really helped me to deal with balance issues and to build strength. Becoming a teacher forced me to learn new skills. I believe that was very helpful in getting my brain back functioning at a satisfactory level.
I hope these suggestions have been helpful to you. I suggest you look up the following Essay by Steven Jay Gould: The Median Isn’t The Message. It will help you regain your perspective. Here’s the link: http://cancerguide.org/median_not_msg.html
Peace and Blessings
Richard Harvey
Hi Vanessa,
I hope today you are feeling better. I am almost a 6-year PXA survivor. PXA is a form of AA3. I was fortunate in that the tumor was in my right temporal lobe region of my brain, so I did not have a lot of language issues compared to what your mom has experienced. I have some recommendations. In terms of quality of life for both of you, your major issue seems to be fear. It is understandable. We all have to take stock in these situations and figure out what we can have influence over and what we cannot. Those things we can change, we pick, hopefully one at a time, and resolve them. For those that we cannot, we have two major choices. Do we dwell in fear or do we give it up to our higher power (it seems you are a believer)? Living in fear is not going to make what time you have very pleasant. It is a choice. I don't recommend it if you want decent quality of life. While it might seem like you cannot control this tendency, really there are tools that work quite well. Mainly what my wife and I have done is carefully define what we want in our outcomes and then begin to imagine how we will feel when we get what we want. It's called The Universal Power of Attraction. A couple of good movies for both of you to watch right now would be The Secret and What The Bleep? They are both pretty good guides on how to manifest your desired outcomes. Focusing on what you want it a tool, initially, for re-occupying your mind with what you want in it, therefore taking power of your time. It is like meditating. Not always the easiest to stay focused while the Monkey Mind tries to fill you with dread or whatever is counter-intuitive to your peace of mind. And teachers of meditation tell us, when the random distracting thoughts come to us, just to embrace them and let them go and return to focusing on what you want. It is a discipline, one that takes time to master but one that will also keep you reoccupying your mind with what you want, not what you don't. And what is the difference, in terms of defining your focus, between what you want and what you don't? In simple terms, here are two possible ways of thinking. 1. "I don't want my mother to get sicker, lose it, fall apart and die." 2. "I want my mother to enjoy life and continue to feel better." You could focus on either one, and I suppose they mean kind of the same thing, but really they're universes apart. Focusing on 1 will make you feel like crap, lose hope and, in my belief system, will attract exactly what you don't want. Focusing on 2 will make you feel better, especially if you put your imagination to work on how great it will feel when those things come to pass. Feeling better in the moment is a keystone of improving your quality of life, and that of your mother. Here is a link to some of my poems that were published online back when I was in my first year of treatment. I hope they help you to feel better: http://www.oncolink.org/coping/article.cfm?c=6&s=31&ss=74&id=1015
Other things to consider. Alternative treatments that work: Acupuncture and Herbs have been very helpful to me. I fought with my insurance company to get this covered and won. The best way to get this is to go through a pain management doctor. The key thing you ask for are help with fatigue, nausea and pain. These are the areas the western medical gatekeepers will accept as viable reasons for acupuncture and herbs. They are not nearly all the cancer related issues that these modalities can help with. For instance I never had issues with my blood work during my two years of chemotherapy, and I know that this modality made a huge difference there. An acupuncturist/OMD will know way more about nutrition than a western medical practitioner. It is a much more holistic approach. Nutrition is KEY to healing. It's not uncommon for Western medical practitioners to believe there is no need to alter diet during BT treatment, and for cancer in general. There are a number of ingredients common in the food supply that are really good for helping cancer to grow. The big ones are refined white sugar, white flour, high fructose corn syrup, and excessive fat, especially non-organic fat. An acupuncturist will encourage you to eat what is best for your healing, and the dietary suggestions will vary as you move through healing. Whole foods are important.
A second modality is marijuana. Recent studies have proven that certain chemicals in marijuana help to kill cancer. Not only does it help relieve the symptoms of having cancer and resulting from western medical treatment modalities, it really does help to kill cancer. It works, and it’s time for our governments to fully embrace this as a treatment modality for cancer, and for many other diseases. While I cannot cite specific studies, I know that Marijuana has worked well specifically for brain tumors. I am living proof, and hey, apparently it hasn’t diminished my ability to communicate, and I’m almost 6 years in with no recurrences so far.
Exercise is key to wellness too. Research has clearly linked language acquisition, especially in relation to grammatical structure, to exercise. This is one of the reasons physical education is so important for children. It should work the same for adults who are trying to re-acquire language. In addition, exercising consistently helps just about anyone to feel better. Any person in treatment for cancer should try and exercise. It releases endorphins, which is good, and it keeps the body strong.
New learning is very helpful for re-establishing neuropathways damaged by radiation therapy. A way to connect exercise and new learning is to take a class. While in treatment I studied to become a certified Tai Chi instructor. I had learned a few forms in the 20 years before I was diagnosed with brain cancer, and relearning them really helped me to deal with balance issues and to build strength. Becoming a teacher forced me to learn new skills. I believe that was very helpful in getting my brain back functioning at a satisfactory level.
I hope these suggestions have been helpful to you. I suggest you look up the following Essay by Steven Jay Gould: The Median Isn’t The Message. It will help you regain your perspective. Here’s the link: http://cancerguide.org/median_not_msg.html
Peace and Blessings
Richard Harvey
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