Barking Up the Wrong Tree…

Let me begin this post by saying that this is an issue I know a bit about.  As a 2 x advanced ovarian cancer survivor, a carrier of the Breast Cancer Antigen gene (BRCA2) and mother of a previvor (survivor of a predispositon to cancer due to being a BRCA carrier), I could play on several teams if cancer were a sport.  In addition, I have a list of ongoing diseases,  including mast cell and celiac.  Each has its own ribbon and finding a cure for each is certainly something I’d like to see happen.

So, let me just get put it out there and say it…SPENDING TIME WHINING ABOUT OTHER CANCERS  IS A WASTE OF ENERGY.

I must confess this has been a long road of learning for me and continues to be.  When I was first diagnosed in 2006, I often asked myself ” Does anybody even care about this terminal cancer I have?”  It’s still hard for me at times.  And no, I will not start supporting efforts of those organizations that do not include survivors that have metastatic disease.  There is so much more I can say about why this occurs and, believe me, I am really holding back. There are many VERY understandable reasons.  Much more complicated when you live in the “cancer world” than just looking in from the outside.  It’s not merely about team spirit, folks.

However, it’s just plain not in our best interest.  We need to be asking ourselves, as cancer survivors, what the impact is of what we do. Are we promoting colors or really assuring our message gets out?   I attend many conferences and the theme I hear from doctors and researchers is clearly that cancer treatment stretches across lines.  For example, there are treatments in urinary cancer that have shown promise for those with ovarian cancer.  If we want to stay ahead of these cancers on research, we need to get out of our boxes.

Seems to me we survivors need to be asking ourselves some important questions.  Am I involved with the cancer organizations that advocate for a cure or just complaining about what’s not happening?  Do I even know what efforts are being done?  Am I spending my energy and time promoting these efforts or complaining about things?  Am I duplicating efforts when I could be joining forces and learning from others?

And, yes, I will probably continue to cringe when I see the commercialization of pink this month.  And I will remind myself of wise people, like Frieda, who has used her voice in a positive way to make a difference and reach across the lines.
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But, I pledge to work hard to fight this beast and use my energy to address what can be done, not what I dislike about what is being done.  I feel quite certain after writing this controversial post you’ll hold me accountable :)

Want to join me??

Patsy

When sadness is the right message…

Greetings to you all! I hope you had a wonderful summer filled with peace, fun and whatever fills your soul. I could describe my summer in many ways. It has been filled with trips and fun, but I think in reflecting back on it I am proudest to say it was the summer I needed and strived hard to accomplish. Yes, it has been too long since I have posted. I have been so touched by those of you that have inquired as to how I am doing. Thank you for caring. I am continuing to do well.  I am so honored that you continue to choose to spend time reading my blog.  I was recently informed  that my blog was selected as one of the best cancer blogs.  I was, to say the least, surprised and very honored.  Go to blog.delimmune.com to check out the blogs selected.

We have had a busy month with events since this is “our cancer” month.  Fortunately, we have had lots of success, especially with getting our message out.  We recently held our annual Teal Tea Party and Stiletto Sprint.  I am so proud of the volunteers involved in both these events because they chose to represent the real side of cancer, not just the “rah-rah side.”  I hear too many survivors with metastatic cancer say they are not welcomed to participate at some events because they do not represent the “cured” crowd.  In my opinion, this is so sad and so wrong on so many levels. This year I had the privilege of being on the Z team at the sprint.  This team was established by my friend, Phyllis.  Phyllis was asked to represent survivors in a TV interview and the day of the interview she was informed by her doctor that he recommended she enter hospice, as there was no more treatment available to try.  Phyllis, in her usual spunky style, insisted that the interview carry on.  The day of the event she kicked the sprint off in her wheelchair and the announcer shared her story.

This month I have lost too many friends.  Funerals have become way too often something I attend.  For me, this true message at events represents the true support that cancer survivors need.  Not “just have a positive attitude,  “you can fight this” , “be strong for those that love you” kinda crap.  The affirmation that survivors need and deserve is for others to know the reality of the disease and to open their wallets to give $$ to cure it.  I’m proud to be a part of a community that did both of these for me and others….thank you, supporters.

Patsy

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I did it again…

Yesterday was my birthday. It was filled with good food (including gluten free cupcakes, yum), presents, fun and lots of love and kindness.  I was so happy that both my children were able to be at home all day, which is unusual due to their work schedules.  It was an absolutely perfect day even with the rain pouring all day.  Just like old times with quilts on the floor, looking at baby pictures, movies, and the grand dog with some…well I’ll just say the candles weren’t the only smell in the room.

Frankly, I’ve never understood why some people dread aging.  My “younger” life was not always a stress free, happy one.   When I was younger, I cared way too much about what others thought of how I lived my life.  I have found getting older to be wonderful, a sort of freedom to live life the way you choose.

I loved the American Cancer Society’s campaign about being the Official Sponsor of Birthdays. What a great public relations effort.  It conjures up images of people being cured of cancer or living with cancer while also having full lives.  For me, it is indescribable to state what making it to one more birthday feels like.  I have so many feelings about it.  I question why I made it this long and others that fought so hard did not?  I think of all the children who are unable to be with their moms on this day.   I wonder how many more I will have?  Yes, as hard as I try to put this thought in a box and close the lid,  I wonder will this be my last?

And then….I turn to the present moment…loving every inch of what I have been granted. Reading the facebook wishes over and over while looking around the room at the most beautiful children in the world and bursting with pride for who they have become, seeing the husband who insisted on making this birthday a celebrated one and realizing that I have been honored to celebrate my day during the season of Easter…a time where living takes new meaning.

Happy Easter… Patsy

Food Fight !!

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Hello to you!!  I do hope you are all doing well.  Like me, I bet you are ready for spring.  I can’t wait until warm weather greets me each day. I thought it was time for me to update you on how things are going since being taken off the trial. My survivor friend Mary  (she wrote a fantastic post here on 12/13/13) is truly an inspiration for me.  It helps so much to have someone to talk to and to get encouragement from when you are making changes.  I think this is particularly true with eating healthy since many of the people around us are not as focused on this. Temptation, temptation, temptation.

A little about my history.  I have pretty much always been overweight and struggled with this. By far, my biggest weakness is that I do not stick with exercise. (a post about that later). But since my diagnosis in 2006, I have lost weight and have been eating what most people would define as healthy.  Continuing to take this drug for 4 years resulted in my body taking a bit of a “hit”, the longer I took it the more tired I became and I ate very little.  It was nice not gaining weight; however, I also was not getting the nutrients I needed.

Although I had been eating pretty well , I realized I needed to do more.  Unfortunately, when I stopped the Avastin, I gained some weight.  This was discouraging for me; however, I reminded myself I was in this for the long haul and needed to hang in there.  As I mentioned in a previous post, I was diagnosed with celiac disease and the rare disease of mast cell in September and you remember the rest of the story….kicked off the trial and referred to the kidney doctor due to suspected kidney disease.

I decided that healthy eating would be my  “treatment” now and my#1 priority. The biggest hurdle was that there are many things I cannot eat due to celiac and mast cell. My celiac was fairly easy…no gluten. Mast cell disease is much trickier. I cannot eat much food that is high in histamine since this may cause an attack.  The tricky part is that day-to-day the amount of food with histamine I can eat changes.  And, of course, it’s the veggies and fruits that are problems for me.

I decided to do a Paleo “framework” plan and eat primarily organic foods.  A very, very different way of eating.  I have had to adjust this some due to my other diagnoses.  I was so fortunate to finally locate a nutritionist that is very knowledgeable about celiac, cancer, and mast cell.  What a dream!  My integrative doctor and my osteopathic doctor have worked closely with me to determine what supplements I need to take.

I am so glad to be able to report that my recent labs were fantastic!!   My cholesterol, thyroid (I have hypothyroidism), vitamin D and on and on looked perfect.  I have had skin problems all my life and now  it is not much improved.  I saw my Kidney doctor for a return visit and he informed me I did not need to return.  Talk about being happy!  My kidney labs had shown great improvement.  Of course, I realize much of this is due to giving my body a break from drugs. ButI also believe my healthy eating has contributed.  My dear friends, Mary and Erica, are also following a paleo diet.  They are much, much more consistent and successful than I am. Recently, Erica learned that her disease had retreated and Mary learned that her tumor markers have decreased significantly.  Coincidental?  Maybe, but I firmly believe we all need to celebrate our efforts!  My philosophy for cancer survivors is to “ride whatever wave works for as long as you can.”

So, what’s next?  I strive to do better sticking with my plan.  Can you relate?  It takes a lot of work.   As Mary once told me it feels as if you’re either grocery shopping or preparing food. (Costco is now my best friend for organic buys). Yep, it takes time and planning.   Some days I am very lazy about eating healthy. How do you stay the course?

I do hope my struggles and gains will help you with yours.   After all, that’s why I write this blog! I’d really appreciate it if you’d share any struggles and successes you have had in the healthy eating area.  I know it would help me tremendously and others, too. I feel better than I have in years.  Both my body and spirit feel renewed…I am Blessed…

Patsy

A Family Member Tells it like it is…

Hello Everyone!  I do hope your new year is going well.  I am looking forward to hearing from you in 2014.  I also want to take this opportunity to especially thank those of you that taken the time to write comments on my blog.  My goal was to offer you a place to share your concerns and to give support.  Today I am sharing an incredible example of just how powerful this can be.  Jeannie recently responded to a blog post that I had written some time ago, so you may have seen her entry .  She has given me permission to share her comments again and so has Lauren, the social worker I asked to respond.  Please share your thoughts on this important issue…

Comment written on the blog from Jeannie:

Not sure if this is the right forum, but my elderly Mom is going through chemo now for OVCA stage 3c after extensive surgery at MD Anderson. I’m doing everything I can.. .she lives in another state and I fly back and forth like she’s down the block… have nurses, sitters, other relatives with her at all times. I can’t move there and have offered for her to come live with me till chemo is over but she refuses. So the problem: She constantly complains about how bored she is… she’s been very active and independent until all this doing all her own yard work, babysitting great grandchildren etc. She’s surrounded by people all the time… lots of multi generational family coming and going which she loves. I bought her a laptop to use in bed because she had spent a lot of time on genealogy and facebook etc online, before. My daughter, who has more disposable income than I, has hired a personal “concierge” for her so that anything she desires appears quickly. WE bring her cross word puzzles, any food she wants that can be reached within an hour, any movie .. book… etc.. .you get the idea. She has everything she could ask for yet she still is complaining about being lonely and bored. She’s almost like a child… it’s so stressful for me that I have developed something like colitis and can’t eat – losing weight almost as fast as she is. Any help would be so appreciated. Thank you.     Jeannie

Response from Lauren:

I am Lauren and I’m a clinical social worker at a cancer center in Greensboro, NC.  It just so happens that I’m also Patsy’s daughter.  Of course, my own personal experience with cancer is what led me to work in the healthcare care setting and I often hear many situations that are similar to yours.  First off, I want to share how absolutely wonderful it is that your mother has so much love and support from her large family and friends.  That truly is a wonderful blessing.
When you ask your mother what she feels she needs, what does she say?  What does she indicate as her biggest concerns at this time?
I would really recommend you share your concerns with your mom’s oncologist and get connected with a clinical social worker at her center.  A clinical social worker can assess for psycho-social/emotional needs and find ways to support the whole family.  Many people going through the cancer journey (and even more often in older adults) experience depression or symptoms of depression.  Often in older adults, feelings of loneliness or boredom can be a sign of depression. It is important for her healthcare team to rule out depression or address symptoms just like they would any other physical symptom.
From what you’ve shared, it sounds like independence is really important to your mother and she may be feeling a loss of independence/control.  A good technique may be working with your mom to help her identify ways that she can maintain her independence and possibly explore what energizes her.
I would say it’s equally, if not more, important that you and your family receive caregiver support.  I’m sure you’ve heard over and over again that “you’ve got to care of yourself so you can care for her”.  Although easier said than done, it is really important! Are you connected to any caregiver support groups?  Are you able to balance care giving duties with your other family members?  Sometimes it’s really hard to know how to “help”…yet the most important thing is to be present.
You are doing an awesome job as a daughter/caregiver!
I would love to hear from other survivors and caregivers that may have experienced similar situations???
 Lauren

Response from Jeannie:

Lauren’s reply hit me squarely between the eyes….  I was taking care of everything I could possibly think of except for her psychological spiritual needs… WHAT was I thinking?  I would just tell her she could talk to me… and try to listen but, of course, I’m really not the best person for this. She’s trying to be brave for me.  I have since called her church and having calls into the various drs and centers for resources that may be helpful. I’m so glad I posted to your blog.  May never have figured this out on my own. Thank you and Lauren so very much.   Couldn’t see the forest for the trees!

Jeannie

Have you experienced this?  What are your thoughts??

Patsy

Mary’s Survivor Strategy

Happy Holidays to you all!!  Today I bring you a guest post that I know you will like.  You may have noticed that, as of my last post, I have created a category to the left to give readers easy access to the concrete strategies that I have used to reclaim my joy.  I very much desire for this blog to give us all an open, safe forum to share emotional struggles/ traumatic events and ways that we’ve dealt with them.  As a result, I have asked my friend, Mary, to be a guest poster.  Mary is an inspiration for me in really making improvements in the way I eat and fighting cancer with healthy foods.  I have made progress in this area, but have a long way to go.  Mary’s encouragement and willingness to share with me has been such a blessing.  So, today I’m sharing this blessing with you as Mary writes about her most recent experience.  Enjoy!

“I recently attended a health retreat to become a patient of Dr. Nasha Winters, a Naturopath with Namaste Health Center located in Durango, Colorado. It was totally amazing to be in the company of people living the life that I have been striving to achieve for the last 15 months after experiencing my first recurrence of ovarian cancer only 7 months out from initial first line treatment. They have started doing week-end retreats at various locations across the country, which made it easier for me to attend in Burnsville, NC!

We have all heard that sugar is bad if you have cancer, but really that is just a part of the big picture. Dr. Winters is careful to point out that she is not trying to cure cancer, but to build up your body terrain to such a level to fight off disease in general naturally. She is a twenty-two year survivor of ovarian cancer and has over 4000 hours studying nutrition. The big take aways from the week-end are as follows:

-        Limit sugar to 15-25 grams per day total

-        Limit fruit, natural sugar

-        All carbs turn to sugar; bread, chips, legumes, etc.

-        No gluten, wheat or grains

-        No potatoes, rice, pasta

-        Drink ½ of your body weight in ounces of water daily

-        Eat 9 cups of veggies per day

-        Use coconut oil, milk & flour

-        Eat organic veggies and grass-fed hormone free protein

-        Get extra vitamin D3, especially in the winter

-        Remove any stresses in your life, to the point of removing yourself from the situation

-        Exercise, especially yoga and relaxation therapies

-        No more mammograms-do thermography instead

There was plenty more, trust me it was overwhelming! But we sat in hard chairs for hours at a time totally engrossed in the information being presented. Everyone there was in some stage of a cancer diagnosis and prepared to make changes to improve our chances of beating this disease.Before arriving at the retreat we all submitted a health & personal history plus 15 different blood tests. She focuses on treating the entire body through mind, body and spirit.Nasha will then provide a treatment plan specific to your needs, including diet and supplements to improve your overall terrain. She does stress that eventually your food should be all of the supplements you need. She also will work closely with your oncologist to combine traditional as well as alternative medicines and will help prepare your body for any upcoming procedures.

They basically follow a paleo style diet and you can google any recipe and add “paleo” and a recipe will pop up. Also “paleonewbie.com” is another good resource. They prepared all of our meals on site and they were delicious, and we had dessert every night! Although they did stress that dessert is for special occasions. This lifestyle requires cleaning out your pantry and restocking with some new supplies but I have been amazed that I am accumulating the ingredients required for more and more recipes. Thankfully my husband is on board and we have had fun trying new recipes. We laugh that the recipes are similar to our usual fair but just “a little off”. I’m working out the kinks, frankly some are better than others.

Whether or not this is the cure for living with cancer only time will tell. This is one phase of my journey that I am embracing totally and I feel fantastic! I can tell you that I have had chronic pain in my right shoulder& hip for over a year and it is practically gone and I do attribute that to eating this way for only two weeks! Sugar and gluten cause inflammation in your body and I am convinced that everyone, not just cancer patients, should try this lifestyle. Also, go to IntuitiveTerrain.com for more information on Namaste Health Center and other great resources.

As the retreat came to an end, I noticed that no one wanted to leave this bubble full of hope and inspiration and the thought that we could actually have some control over our health. In our world  that is huge! But come to an end it did and we all left feeling more empowered and excited to get started with our new lifestyle changes.  Namaste! (The spirit within me acknowledges the spirit within you!)

mary picMary and Charlie at the Lydia’s Legacy Teal Tea Party

Dark Clouds and Silver Linings

Hello, dear friends!  I do hope you are all doing well and looking forward to the upcoming holidays.  Several of you have asked how I am doing so I’m using my blog entry today as an update in hopes it will help some of you going through similar issues. So, here goes…

I mentioned in an earlier post that I received a diagnosis of mast cell disease and have been asked about this.  For several years, I have had some very strange reactions to certain foods. I would suddenly start feeling nauseated, become extremely flushed, and go into an anaphylaxis episode.  It was a bit scary.  Mast cell is a rare autoimmune disease that involves the body having too many mast cells.   It is not an allergy to food.  The only way to determine one’s triggers are to by actually experiencing an episode.  Some people are triggered by foods and others by things in the environment. Treatment for me is, of course, avoiding triggers and medication.  I carry my trusted epi pen and Benadryl with me.  If you want to learn more, go to http://en.wikipedia.org/wiki/Mastocytosis.

For several years, I have been having difficulty with diarrhea.  (As you can see, I have no pride when it comes to talking about  bowel issues).   So, I have had numerous tests done and seen 2 different Gastrologists.  I have lost weight because of this and have been getting weaker and weaker.  Believe me; the body needs to retain nutrients.  Well, I began seeing an integrative medical doctor at Northeast Medical Center and she ordered a celiac profile.  Yep, I have celiac disease.  So, I have been adhering very strictly to a gluten-free diet.   I like not running to the restroom after eating and have learned now that a gluten-free diet is recommended as a healthy eating plan for people with and without the celiac diagnosis, particularly cancer patients since it reduces inflammation. http://celiac.org/celiac-disease/what-is-celiac-disease.

Many of you know that I have been on an avastin trial since my cancer recurred in 2009.  I have been so fortunate that it has worked well for me and kept me cancer free since then.  The long-term effects of being on this drug for so long are unknown so it has been a bit of a risk, but well worth it to me.  Well, it seems my time hanging out with avastin has ended.  A couple of months ago, my kidney protein/creatine ratio labs began to rise and continued to the point I had missed several treatments, per the trial requirements.  The hope was that taking a break from avastin would make the numbers go down, but, unfortunately, they almost doubled.  So, now I have been referred to a nephrologist to determine what the next steps are.  And, yep, I was terminated from the trial due to the increase.

Several of my family and friends have asked me how I am feeling about having to stop avastin.  It does seem somewhat strange. Getting the avastin every 3 weeks has become a part of my regular routine.   I understand why some women discontinue drugs that are working.  I have been tempted to do so at times.  However, when I entered the bleep bleep cancer world I made a couple of commitments to myself.  One is that I will take risks and “ride any wave” that works for as long as I could, so I tolerated the side effects, which could have been much worse.   I have also attended many conferences and learned that some believe that when avastin is used for an extended length of time and stopped, the cancer comes back with a vengeance.  This was a risk worth taking for me.  I take staying alive very seriously.

But, all is not bleak! Except for the blood pressure hikes and the kidney woes, I feel better that I have for a very long time.   Getting the avastin for so long has really caused my body to take a hit.   I need some time to build my strength and my medical team agrees.  I am focusing my efforts now on eating right and taking care of myself…something I do have control of.  My team at Levine Cancer Institute (thanks Dr. Hall, DeLeslie, and Sarah) has been exceptional and caring and kept in close contact with me and included me in the decision-making.  In fact, I believe that we have worked as a model transdisciplinary team.   My advice: insist on this from your team.  Your input is valuable and needs to be heard.  Of course, the more you know, the more you can contribute.

I mentioned at the beginning of this post that I hope others experiencing similar situations as mine can benefit.  Ok, here’s another commitment I have made. I have worked very, very hard to really live by the belief that “I will not worry until there is something to worry about” and that has made my life a much more joyful one.   This may not make a lot of sense to you given I have just shared some concerning news. However, remember, cancer is a skilled robber and stalker so we CANNOT hand over our power to live in peace and contentment.   I know I sound like an Anti Cancer Evangelist but for me I have to feel that strongly about it to protect my joy.  I have a feeling any of you dealing with struggles can identify.  Hey, I’m just a gal trying to hang in there and have fun.  I certainly may fall apart in the future.  However, that’s the future and isn’t it really today that matters??

Have the happiest of Thanksgiving ever!!  I am incredibly thankful for you all today and always!!!!!!

I don’t care…

about pink football cleats or what color towers are.  I just want funding for research NOW so we can find a cure for the monster.

It has again slithered out like a snake taking hold of an unlikely healthy body, loving spouse, dedicated parent and person I love dearly.  Enough said…

 Patsy

Patsy takes Miami

I’m excited to be on my way to Miami to speak at the Teal Over Miami event.  The event is sponsored by Lydia’s Legacy, an organization founded by Carin Ross Johnson in memory of her dear mother, Lydia,  who died of cancer.  Lydia, was an active advocate in her hometown of Miami.  There are limited services there for survivors of gynecological cancers, so Lydia’s Legacy is  having a special event called “Teal Over Miami.”  Carin has a core group of dedicated volunteers and needs more. So, if you’re from the Miami area and would like to help  provide needed services, let me know.  Special thanks to my FORCE (Facing Our Risk of Cancer Empowered) Miami sister, Wendy U. for all her help!

Come out and join us Saturday night.  I promise it will be fun and would love to meet you.  http://www.tealovermiami.com.

Of course, since this is my first trip to Miami, I must stay for a longer visit and enjoy the city.  I have been waiting for this trip for some time because I get to spend several days with my very best friend, Sherry.  Sherry and I have known each other pretty much since birth.  She is an absolute doll and more fun than you can imagine.  I admire her very much.  She has been the caregiver, who suffers from a serious illness, for many years now.  She certainly deserves this trip and I can hardly wait to see her.  Sherry has been there for me through some really tough times and I love her dearly.

So, bags packed,  flight leaves tomorrow!  So important to make time to have fun and to spend time with those we love.  I am truly blessed.

Love to you all…

Patsy

Love to you all…

Patsy

I’m Tired of…

Being Tired.

That sentence tells it like it is and is so true for me.  Admittedly, that’s why I have not posted lately. I just haven’t had the energy.  But to be completely honest, I find it difficult to post when I am feeling blah.  I promised myself that I’d not only post happy news, but I am surprised at how hard it is to write about uninspiring stuff.  Have you ever noticed that most pictures of survivors are those depicting victory?  I was looking at a recent commercial recently and it was about an upcoming walk.  All the survivors looked so full of energy.  One time I heard a doctor talk on Good Morning America.  She was asked why some cancers were not more active and better represented.  Her reply was so incredible.  She clearly stated that many survivors are just too sick to do it.  Bet that didn’t inspire anyone.

So, let’s talk about being tired a little.  The causes are much more “day-to-day” than others sometimes realize.  You start with limited energy.  I have worked really hard to only use my energy doing what I want to do with those I want to do it with, so it’s not really an issue of prioritizing my time.   Survivors often have to use it doing chemo, tests, and medical appointments.  For example, I have 3 next week and that’s a good week.  Another issue is that  if you are in treatment long-term, the drug just beats your immune system down and that causes other medical problems.  That’s been my case.  I have seen a lot of specialists due to issues that seem to have no resolution.  My latest diagnosis is mast cell disease.   So more tests.  I have added on 5 more medicines and they are causing me to be even more tired.  These are just examples of why the issue of being tired seems to be pretty chronic for many survivors.

The impact of being tired way too much can be really depressing.  Naturally, we don’t necessarily look tired or act tired around others.  It’s very unlike when you’ve lost your hair or have other signs that you are struggling.  Of course, it’s hard to get things accomplished, hard to find time to be with those you love (and I have so many),  and hard to be part of a family where others are productive.  For me, I limit my travels and I find it very hard feeling as if I am wasting valuable time not living the life I have been blessed with.

I have been thinking so much about this and hear others that are dealing with cancer and other illnesses talk about it, so I decided it warranted a post.  What are your thoughts on the issue?

Patsy

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