Wednesday, June 30, 2010

Today's insight

Today is a beautiful Southern California kinda day (weatherwise) in Kansas City. It makes me happy and has given me a sense of peace. The past few days have been hard because my husband has been sick and in the hospital with all kinds of complications from canser. (I purposely spell canser wrong to take away some of its' power...thanks Kris Carr for that idea) It has been a long, very heart wrenching 5 days. I have been scared like never ever before, nervous, anxious, my confidence has wavered back and forth but today just out of the blue I feel good about things. Even as he lies in bed knocked out on pain meds. I brought him home yesterday and was so afraid of what it was going to be like out of the hospital. You should know I have been the patient with several serious things going wrong in my body and one big life threatening problem that kept me hospitalized for 1 month. I remember coming home from the hospital and being scared to be home but so happy to be home. Everything about the last 5 days brought back memories of my illness which did not help the situation or my belief in my abilities to handle all of this. Today as I was waiting for prescriptions to be filled in the hospital pharmacy I was watching everyone coming & going and I thought well shit this is a lot of sick people but who's to say that they will be sick tomorrow. Miracles happen everyday. I know. I got one. I am alive and my husband has been beating the stats of stage IV inoperable adenocarcinoma of the pancreas with mets for 2 1/2 years. Losing faith seems silly but what is so important in dealing with illness of any kind is to recognize the mind,body,spirit connection. The whole person. When Paul was first diagnosed he threw himself into healing his emotional life. I was shocked and inspired by the changes he was making and the benefits to our relationship and quality of life. I had to do some exploring for myself and I made many life changing realizations of my own about how my thoughts & feelings both the hidden & the expressed were effecting my life and health. It was a huge Aha! moment. It is easy to be taken off the path to emotional wellness which equals physical wellness by the world around us, the negative news, the stresses we place on ourselves & each other including expectations of how it "should be". So many things,people can get in the middle of our path but in the end it is our path...our choices. I was telling my husband that I recognize that a few months ago when pain became a part of his life and pain meds were increased moodiness, irritability and a loss of the knowledge that we had embraced and were living by fell to the side. Now it is understandable that this happened because living in constant pain is not living but that is when the negative patterns started up again and it was shocking to us both. He realized it was happening but as his condition worsened it became harder to release those patterns. I do believe that there is a connection to what we are experiencing now and that emotional breakdown.
Canser forced several changes in our lives. These changes have been positive. We know real happiness, true deep love, and awe at the world around us with so many possibilities and experiences to be had. I think we needed a kick in the pants again and unfortunately it was his pants that got the kick but we never would have found the new and so far amazing team of doctors that he now has. I think they will help us on this journey to wellness and we will help them too. Docs don't often get to see miracle people but they have hit the jackpot with us as we have with them I think. The past weeks, months have sucked but this time next month who knows...the sky is the limit! Last year in July we were hiking in Topanga Canyon in California and playing on the beach in Malibu like we used to when we lived in LA. We have lots more playtime in store. I feel good about that. If I need or want to cry I will do it. You should too! When I am pissed that this is happening than I am..no hiding it. Anger causes illness if you let it fester inside. Express yourself....not in a violent or harmful way but get it out and think hard about that saying" getting it off your chest". When you suppress anger or anxiety don't you usually feel it in your chest....your body is trying to tell you something...release it. You would not hold your hand in a fire and continue to get burned. Love yourself and part of that is being the person that you really are and feeling your very real feelings. Acknowledge yourself to love and nurture yourself.
Have a positive day!

Friday, June 25, 2010

Minddump

I hope none of you reading this ever have to be in a frantic race to find the right doctors,etc. to save the life of your spouse or other loved ones. It is a helpless feeling but then you happen upon a name followed by a specialty practice and it stands out and beckons you to contact the person. Maybe they will have nothing to offer but maybe they will have everything to offer. That is what I have been going through lately in a search to replace my husband's oncologist or get a second opinion actually this would be a third opinion. I found the doctor I want to replace with and she is closer to our home which is a plus and specializes in everything going on with him. I went through a week of hell getting copies of his records taking them to one place only to be told to take them to another place and then getting lost there because it is a large facility. I got it done though and that was a load off my mind. Within a few hours her office called and spoke to my husband and said they would be sending a new patient packet out to him. Score! I was so happy I almost exploded and then I remembered that in all my craze I never checked to see if she was covered under our insurance. The hospital she is associated with is but when you are trying to save your husband's life you do not stop to think "will insurance cover this doctor who seems to be the best person for the job right now" No, that is the furthest thing from your mind. You are just so happy to have found him/her and hopeful that thier knowledge can help. It is so wrong that the medical system is set up the way it is. It is so wrong that insurance companies decide our care or lack of it deepending on the situation. Doctors and nurses don't go to school to work for insurance companies and under those companies guidelines. Hospitals are not meant to function this way either. Doctors,nurses and hospitals are there to help those who need them get well...that is how it is suppossed to be anyway. It makes me so angry. Now, I am grateful for the insurance we do have because cancer is damn expensive and has already drained us of our savings and killed our credit but my husband is alive so who cares. All I am saying is that things must change and change soon. It's not about the bottom line it's about saving lives. Why is a 30 day supply of meds $5000 without insurance? Why is a bag of chemo $3500 per infusion? Why are hospital socks $20..they are cheap & ugly. If a doc walks in a room & says nothing why is that so expensive? It has to change.

Wednesday, June 16, 2010

a real story

Yesterday I had one of those reaffirming moments or as Oprah calls them an Aha moment. I was at work not wanting to be at work after a not to great start to my day in the morning. We were very slow in the store and for a time I was alone behind the counter. during this time a middle aged man came to the counter. I did see him come in or hear the door open so he kinda caught me off guard. He had something going on with his face...not a tick but like that...it looked familiar to me though. He started telling me that he thought he probably lost his layaway because he had been in the hospital for the last 2 1/2 months. He had had a stroke. A very serious stroke. That's what was familiar to me. Even though I did not have a stroke 3 years ago the brain abscess left me with stroke like symptoms and after effects. I listened as he told me his story and I empathized with him telling him I understood because I had been through something similar but different and yes I knew how crazy expensive some medications are not just from my experience but because my husband was dealing with cancer. I also was able to locate his layaway and it was still current. he was happy and he thanked me for looking and went into another room. I stood at the counter and when he was walking out of the store he stopped, turned around and came to the counter and said "madame..I just want to say thank you." "No problem the layaway is still good." "No thank you for letting me talk and tell you my story because I don't really have people I can talk to about that...thank you." "Thank you sir." And he walked out of the store smiling and left me smiling. I can't describe how amazing that made me feel and on a day that I needed it. It was like a miracle had just occurred for us both...a sense of well being and connection amongst strangers in the very most unlikely of places. You never know is all I can say...you never know who, when,where or why. Be open. Be present. Don't be quick to judge people. It was no coincidence that man came into the store yesterday. I am grateful!

Friday, June 11, 2010

a new juice and a new recipe

We have come up with a new,to us, juice that Paul loves..me too. It is 4 juice carrots & 2 oranges. Now it is true that carrots contain a lot of natural sugar but they also contain beta carotene which helps fight cancer. It is a powerful antioxidant. Oranges also contain beta carotene as well as vitamin C. Oranges are loved in our home b/c they have also been shown to reduce to risk of pancreatic cancer. Flavonoids are contained in the pith & membranes which strengthen capillary walls (not the greatest thing if you are fighting angiogenesis or capilary growth to the tumors but we chose to risk that over the benefits.) but also have an estrogen like effect. While on certain chemo treatments citrus fruits interact with the chemo so if you are on chemo check this out. Some argue that it is better to eat the fruit & veggies than juice and it is a great idea to do both in my opinion but when dealing with a serious illness it is usually easier to juice because the juice is readily absorbed into the body and no mass amount of enzymes or energies are needed in the break down of juice like they are in the break down of the fruit or veggie. Plus a combo can be had in a glass of juice making it rather easy to get in a full days' serving. So eat the carrot and the orange but juice them too. This one is like summer sun in your glass.
I made a new recipe last night based on one from Caring For Cancer's recipe email. It is not visually appealing which is so important to my husband but he tasted it and liked it. Also keep in mind that split peas have a distinctive oder so if smells are an issue you might come up with an alternative to them like lentils.
This is my version....
1/2 sweet onion (I used a vadelia onion)
1/2 cup yellow split peas
1/2 cup millett (I used quinoa)
1/2 cup plain pumpkin
1 cup unsweetened coconut milk
1 tsp. cumin
1/2 tsp. sea salt
cayenne to taste...I used about 1 tsp. to get a spicy flavor
Soak the quinoa for 8 hours. Cook on the stove top till soft and the little "tails" are visible about 20 minutes but check often since we soaked them. Cook the split peas about 40 minutes or so.
Add the coconut milk, onion & spices to the quinoa and bring to a low boil. Add the pumpkin and stir well. Serve the quinoa mixture over the spilt peas.

Monday, June 7, 2010

Married Life

There are quite a few things going through my mind right now to write about but I have been dually inspired to write about marriage. When I was growing up I was not a little girl who dreamed about her wedding day or having a family. I wanted adventure and Independence. I come from a very large family and I was not interested in contributing to the nieces & nephews branch. I like kids a lot but I like them a lot more when they are someone else's responsibility. I want to play with them and be able to leave them. This is a good thing because I have a medical condition that makes it impossible for me to safely be pregnant. What sucks is that I found this out the first year of my husband's canser diagnosis. So it was like ok, you are recovering from your illness nicely, your husband has stage IV canser and oh yeah if you get pregnant it will most likely kill you. Wow! ok geez. That was a banner 2 years of medical lemons. One thing that was so important and so stable was our marriage. When serious life threatening illness enters the picture it can cast pretty dark shadows on everything and make you review your life and your relationships with a fine tooth comb. It is a relationship strengthener or breaker. You realize every little thing you love and cherish about each other instead of every little annoying thing that makes you crazy about each other. I remember strolling down memory lane in my mind those first few months and remembering with such happiness all of the fun little things about my husband, our long dating life and our experiences together. I would go to the store before going to work and sit in my car waiting for them to open and think what life for me would be like if canser won and I was alone. It makes me cry now as it did then. We have been together for about 18 years which seems crazy long. We dated forever before getting married which was ok with me. In fact I recommend it. He broke my heart a few times during that time by breaking up with me but we were young and I always knew it would not last. I always knew we were meant to be together. We moved to LA in the mid to late 90's and lived together for the first time. Our time there was amazing and living together let us experience each other in a whole different way. Our first big fights happened during this time. We experienced financial mess ups and living on a strict budget together. We loved it a lot in our west LA apartment 5 minutes from Venice Beach. It was hard sometimes but living in southern California was a beautiful blast! When it came to an end that was out of the blue and not in our plan due to a serious illness in my family I was amazed that he moved back to the Midwest with me and knew that there was no reason to question our relationship again. But that did not last in my mind. About a year after we were married I was in our bathroom getting ready to take a shower and I looked at my feet and noticed that my toes were not painted. I just started crying because my toes were always painted red for as long as I could remember..always. Who was I now that I was married? I co-owned a home and had no desire to be domestic at all but I spent all my free time cleaning everything meticulously and arranging crap to look one way or another. I was not being creative at all and that was not me. I was all business all of the time. I had gotten lost in the stereotype of what a wife is supposed to be and do and how the marriage is supposed to be and look. It was crazy. It made me crazy. I was not happy in this role and did not know how to get out of it. Topping it off were questions about when we were going to have kids. When I would say not every woman or married couple needs or wants kids I got "the look" or a mean comment or silence. It was a lonely place to be. Really it was not until my life threatening illness that I settled down and relaxed and appreciated my husband like never before. I was in the hospital for 1 month and out of work for 6 months. My rehab therapy took 1 year. Paul was by my side the entire time tirelessly making my meals, monitoring the 40 meds I was taking,teaching me to drive again ,helping me wash my hair. I felt helpless and totally like he should leave me now. He was 38 years old and taking care of his wife like an old couple or like I was a kid. Paul is a musician and loves to play music with other musicians and here he was having to work to pay the bills himself,we always split everything in the past, watch over me. He did it all with love. I never in all of our time together felt love from him as I did then. It still leaves me speechless. Then the tables turned. Now it is my turn to take on all of the responsibilities, care for him,get his meals,etc. and love him through the pain and frustration of canser. It is tough & overwhelming but there is no place I would rather be than with my husband except with him on a canser free path...we are working on that one. We love and adore each other even on the rough days like today has been.
It is so easy to loose one's self in regular life situations and so important not to allow that to happen. Because if life tosses you some serious lemons you need each other in ways you never imagined. It is important to be your unique individual self always. You posses qualities you never knew you had and your uniqueness is what attracted your spouse to begin with usually so don't loose sight of that as you grow up. You'll need you throughout your life.

Saturday, June 5, 2010

Wise words

Last week I was talking to my best friend on the phone, she lives in Oregon, and I needed to vent some feelings of frustration and being overwhelmed and she told me that her step mom used to tell her that we are never given more than we can handle and she hated hearing that but she now realizes that it is true. She was a social worker, caretaker for her mother who passed from cancer and one of our dear friends who also passed from canser. She gets it and she understands. She also said that she knows it is true for us because she has witnessed how we have dealt with everything starting with my illness and then canser. "You know you are strong and no matter what it is you can deal with it." She said this to me after I told her about the anxiety of waiting for the latest scan results. This was not the first time she has said those words to me. The night I called her to tell her that my husband had been diagnosed with canser she said those words to me and I have carried them with me to this day. I remember then thinking no I do not know that. It is easy to get lost or caught in the tornadoes as our T'ai Chi instructor calls them of life and forget our strength. So yesterday it was tested big time and we both stood up and we are handling it. I had to replay her words in my head a few times but it finally sank in. Canser has taught us a lot but I think one thing that I know for sure is to be ready for the unexpected because you have no idea what is going to happen tomorrow....hell 2 hours from now. Life is hard...no canser is hard...life is beautiful and full of possibilities. I know this. Like Sally Field said "change is never easy." and like Nelson Mandela said "The brave man is not he who does not feel afraid, but he who conquers that fear." That is one of the challenges of dealing with a serious illness of any kind...conquering the fear.
I spell canser wrong on purpose. It puts the oxygen back in the room.

Wednesday, June 2, 2010

Changes

This morning I was listening to Alicia Silverstone talk about her book and her vegan lifestyle and it got me thinking that I am a vegan and I am interested and people are usually curious about why people make the lifestyle choices they make. So, I will share my reasons.
For as long as I can remember I have been a huge animal lover. As a kid I never really gave much thought to eatngi meat or drinking milk and where it came from. My dad always had a huge garden in the summer so I understood about the veggies on my plate. In high school I became more curious and learned about animal rights issues. It was in high school that I became conscience of animal testing but I still ate animal products and bought leather in college I learned more about factory farming. However it was not until after college that I became a vegetarian. I can remember as clear as day one night looking at a plate of roast that my mom had made for dinner and gagging. I had eaten this several times in my life but this time was different. I made the connection that this meat on my plate was the flesh of an animal and the stringy pieces that so easily pulled apart were pieces of muscle. I was disgusted totally. Then I remember thinking of how many times I had eaten the skin of a piece of chicken and how it was skin just like mine. That's was it for me. I decided that until we started factory farming and eating people I would not eat another animal. I made the connection that they are living flesh & bone like me. So, like many I ate a poor vegetarian diet and did not educate myself properly about nutrition. In our early 20's not many of us do this if ever. I went to Taco Bell with everyone else and ordered a bean burrito. At steak restaurants with the family I ate iceberg side salads. When my husband & I went to our favorite pizza place my half was veggie. I liked Bocca Burgers and many other processed soy foods that were easy to fix. I endured the sarcasm & mean comments about my choice not to eat animals and moved ahead. The one and only time I ate a piece of meat in the past 13 years was when visiting my husband's grandparents for the first time in California. They forgot I did not eat meat and she prepared beef stroganoff from scratch. The table was set with her china and she was the very gracious hostess whom served you and did not eat until her guests were eating. What could I do? I took one for the team and paid for it on the ride back home to west LA. I was sick to my stomach the whole way but I decided it was worth it because we had a lovely visit.
I like many was always curious about becoming vegan but it seemed too lofty a goal as did eating exclusivly organic. I knew I was not knowledgable enough and since I did not cook I figured we would starve. I too bought into the excuse that organics are too expensive. I loved my cheese & ice cream and told myself that would be too hard to give up. I did not really become food knowledgeable until my husband was diagnosed with cancer 2 1/2 years ago. Excuses get thrown out at that point. I have taken a lot of nutrition classes and cleaned up our diet completely. I even began cooking and preparing meals which I never really did before. Cancer has changed our lives in so many ways mostly for the better. Our food knowledge is impressive now. I am super proud of us both for it. We have both acknowledged how we feel so much better in so many ways because of how we now eat which is all organic,no processed or refined foods...vegan for me and partially vegan for him. I have never felt better in my life. I look great, better than I ever have in my opinion. I lost weight due to the serious illness I had 3 1/2 years ago and then lost a little more when we got his diagnosis. I needed to lose some weight. Our lifestyle has allowed me to maintain my weight loss. When I was sick I weighed 180 lbs. in the hospital. I got down to about 140lbs. by the end of that year. When we got his diagnosis I lost another 10 lbs. The last time I was weighed I was 131lbs. I am definitely more active than ever. During the first year of an organic vegetarian diet my allergies calmed considerably and I got only 1 sinus infection that year. I used to get them all year long. My primary doctor was impressed and asked me what I thought I was doing to make this happen? What changed? My diet changed I told him and he shrugged his shoulders and agreed that this must be the reason. I sleep better too...score! I was always a terribly light sleeper. Any little thing would wake me up but now I sleep sound.
I really credit my diet and lifestyle changes for making me healthier and happier than ever. I put in a huge effort to educate myself but I love having this knowledge. If it is good for me than I feel it is good for those I love and good for the planet.
I encourage you to give some consideration to making some changes. I am not telling you to become vegan..unless you want too...but explore some changes that you have been thinking you would like to make. It really is not as hard as we tell ourselves it is going to be but you won't know if you don't try. Baby steps is a good approach. Make small changes to start off. I feel that unless you have a health concern that makes it necessary to make big changes now the best way to do it is baby steps. Allow yourself transition time and mistakes. Also make time to educate yourself and reflect on why you want or need to make these changes. Good luck! Have Fun!