How do you live well?

Mandamoo · 10-02-2012, 03:34 PM

I am so very saddened by Brnda's death - a true warrior inspiration to me on this site it came to me in reading her tributes that she had much to share in her time with this disease.

So I am prompted to ask you all - how do you live we'll? What choices do you make? Be it smoothies, meditation, just getting on with things, advocacy, raising your family, traveling, diet, exercise?

I love this site because everyone here has an optimistic and supportive philosophy while not ignoring the downsides. That's what keeps me coming back. I fear however that our medicines are only part of our story and I wish to know and share more.
There is a selfishness here in this request too - I am feeling low, I feel the need build myself up again, fill myself up again ready to keep going, to remind myself that I can do this as others are, to keep living fully.

I will share first - I choose an integrative approach to my care and management of this disease. I use conventional medicine (tdm1 currently) and traditional Chinese medicine. I am learning Qi Gong, I try to practice mindfulness meditation, I drink green juice and lemon juice and vegetable juices and eat a diet that limits processed foods, sugar, animal products (meat and dairy), I exercise with walking, cycling and swimming, I love my garden and photography and of course my family!. Lately I am finding it hard to motivate myself as I am saddened by a number of deaths and wonder why I dare to be different. I have to keep trying though because miracles do happen and I just have to never give up so I can parent my children.
So - anyone else keen to share?

jacqueline1102 · 10-02-2012, 04:06 PM

Hello Amanda,

I empathize with your post. As far as your question about living well, I have tried to continue my routine as much as possible. I work fulltime, love my husband, and spend time every week/weekend with family and friends. I tend to ruminate so spending alot of time being idle is not healthy for me. I do take supplements now; COQ10, Glucosamine, 2000 mg of Vitamin D daily, and have eliminated diet coke from the diet. I still love the ole' Starbucks which I treat myself to on the weekends. Mindfulness is a form of meditation and therapy methods which is useful. You might read up on mindfulness. I continue to exercise weekly although being consistent is a challenge. We had our house painted recently which is something we have wanted to do for some time. Fall is here and decorating for the season is always great fun. My 50th bday is coming up so we are having a blow out party. We also plan trips. Seattle was this summer. St. John in January. I try not to think about whether or not I am not going to be here to celebrate the special events in my life. I just schedule the trip and go. Much easier said than done. I have an awesome support network which I know many women don't have. I am blessed that I have a profession I love, a husband who adores me, and friends who unconditionally love me. I will continue to work and contribute as long as I can. It helps right now that I am also responding to treatment which provides some hope. I try to gauge myself by how my body feels. The emotional despair can take over but if the body is feeling good I push myself. I try to live in the land of now while still planning for fun in the short term future. All that being said, I don't have children which makes for a far different situation in my opinion. You are a mom with young children. I hope this helps.

jacqueline1102 · 10-02-2012, 04:26 PM

I thought I would add this about other things; I no longer drink alcohol. I would love my wine on the weekends but now the wine just dehydrates me and even a few ounces of wine makes me feel like crap.

KsGal · 10-02-2012, 11:13 PM

I can identify with the feelings you posted about. I feel so much despair when I see women with such positive attitudes and strong spirit stolen away by this horrible disease.
I tried for as long as I could to keep things "normal" for my kids, and I managed for about year...working 45 hours a week and doing all my regular activities. I quit work a week ago due to my lack of energy and the muscle aches and such, and was approved for disability in no time flat.

To try to maintain the health I have left at this point, I meditate, I do self-hypnosis CDs. I recently watched the documentary Sick, Fat and Almost Dead, and decided I, too, would start doing the green juice and vegetables and fruit, and not eat processed foods. I walk for exercise and swim in an indoor pool with the temperature at a therapeutic level (this is more for my fibromyalgia-like symptoms). I try to only allow positive energy and thoughts to surround me, which of course has been more difficult lately.

Sometimes I think I am in some kind of denial, because I dont feel THAT sick, so until I hit a major setback, my brain cannot really accept the concept that what I have is "terminal".
I pray every day for that breakthrough discovery will come that will save us all, and that I will hang in there long enough to see it approved and available to everyone.

Redwolf8812 · 10-03-2012, 04:52 AM

Prayers, prayers, and more prayers....

It's the only way I know how to "live well".

JohnnyM · 10-03-2012, 05:55 AM

I believe a healthy life style is the most important thing. We get up early, eat healthy, brisk walk daily, sweat in the sun, sleep well, shower and smile generously. Strange right? Nobody seems to think this way. You could take a light supplement like ASEA water to enhance your immune system or fitness level. But medicines are a total no-no.

karen z · 10-03-2012, 08:17 AM

Goot post and responses.
I need lessons so I will listen for awhile.
I have been known to take direct orders.
K

yanyan · 10-03-2012, 10:45 AM

I try to live a normal life by working full time and enjoying life while i can. I added meat and soda and sugar back to my diet after the cancer diagnosis, maybe not a good thing and i should cut back on sugar for sure. I take Vitamin C, iron ( for my anemia ), bee propolis, mushroom and selenium, calcium and kelp. I was taking Chinese herbal medicine for a few months but stopped when i started tykerb and xeloda. I feel less stressed now and more calm. I plan to enjoy life -traveling, moderate excercising and spending more time with my family as much as i can.

Vicky · 10-03-2012, 01:29 PM

Thank you Amanda for sharing so openly about how you are feeling. I too have struggled a bit as of late with feeling an urgency to live, while striving to live as fully as possible. I make spinach, kale and fruit smoothies, limit sugar, dairy, meat. I walk most days, sleep 7-8 hours at night, and enjoy an active faith community. My boys are a constant source of joy with their daily shenanigans. I blog about everyday life and use my photographs to document our family moments together.

But I relate to what KSGal said about feeling like I am in some kind of denial that I am terminal at times, to feeling like what if I too am closer to the other end than I know? Yes- Amanda- why dare to be different? I question that too. I don't usually wallow in this for too long- I don't want to "burn daylight" and waste any precious time. But I can relate to those feelings.

I had my latest Dr.appointment yesterday and my tumor marker/cancer remains stable. I went from being seen once every three weeks, to suddenly being seen once every 3 months. I should be elated, and yet stable feels so precarious and in some ways I feel a bit in limbo.

Its good to be able to share with others who can relate- thank you everyone for your thoughtful responses!

Cathya · 10-03-2012, 07:34 PM

Amanda;

I have been thinking about your post and wondering if and how to respond. I have basically not changed much since my diagnosis.....except that I am now not working. I feel so liberated as the incredible stress and fatigue I felt as a single parent with two children working in a job I didn't particularly like but was unable to leave is now lifted. I need to lose some weight, thought I should give up meat but haven't, drink wine when I feel like it, don't exercise enough but keep walking but I feel happy. My immediate family lives close by and we get together often and I enjoy them, I take care of my parents who are both in their 90's, love my children and feel their love for me and we laugh an awful lot. I can't afford nice holidays and would love to go to California yearly to meet the her2support group but really can't. I hate, hate, hate hearing about our sisters who pass and remember them all and reading their posts and how much each one gave to this site....then I remember how little I have given as I do find it hard to find words and feel badly again. However, even with this I keep coming back and feel the wonderful support of this group particularly when I do look into the future. I don't go to church and don't pray, even when I think I really should. I love reading....everything....scientific discoveries, astronomy, mysteries...you name it.

Amanda, I live each day and try to focus only on today. I might look forward to Thanksgiving or Christmas this year but not much further. It isn't really the cancer worry. I've always been someone who shouldn't look into the future, especially without someone very positive beside me. But in each day I am a happy person. I love you all and feel blessed to have found this site.

Cathy

Mandamoo · 10-03-2012, 11:56 PM

Thank you all so much for sharing - I am loving reading your responses and learning from you all.
It seems many of you (and me) live with optimism. I too most days feel amazing and struggle with the idea that the medical experts feel there is so little hope.
My oncologist talks of chronic disease and wow if I can do as well as some of the stage4 women here and those I know personally then there is much to continue hoping for.
For now I focus on enjoying life too but also trying to weigh the benefits in my favor by having the best lifestyle I can and developing my spiritual side too. I am a changed person - I sometimes grieve for my old life without the worry but most times I just live for now.
Thank you for so openly sharing with me.

BonnieR · 10-04-2012, 11:17 AM

Since I am not at stage 4, I hesitate to post here because I know we face different challenges. But I really related to the wanting to do everything to be well and stay well. I felt frantic at times. Trying so hard. Running to every group, every exercise class, every lecture, worrying about soy, blaming myself for still loving desserts, taking yoga and not liking it, trying something else, etc, etc.. I guess I am saying that it was hard work, staying on top of all this good stuff I was supposed to be doing. I forgot to just breathe once in awhile. I am trying to practice moderation and slow the pace.
Keep the faith.