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!!!!!!

7 Comments

  1. Alicia

    Wow! You have so much going on…. I am so very glad that you are able to take time for yourself and just recooperate. Going Gluten-Free is awesome, my sister has been eating that way (health reasons) for about a year. The food is completely unique and some an aquired taste. I hope you have a wonderful Thanksgiving!!

  2. Stephen Davis

    OMG! I did not understand all that you told me yesterday – only that I was concerned (scared) at how your voice sounded and what I picked up from what you said. You are still my hero and I will worry if I need to. Stay on top of the Joy and lets enjoy every minute we can. Love, Ruth

  3. Carin Ross Johnson

    Thanks for enlightening us with information, love and courage. Love you always!!

  4. Gwen

    Patsy…this is good news and bad. I’m thrilled that your digestive issues have been identified, and mostly resolved. Yay!!! I’m sad that you can no longer continue the trial, and I will pray the beast will stay at bay. When I was initially diagnosed in Charlotte, it was Blumenthal Cancer Center then, I had the same team you do. I love those people. They were constantly in communication with me, and I miss seeing them.

    My biggest challenge since 2010 has been keeping my joy in tact. There are days when I feel it slipping, but I battle it with prayer. It works. Like you, I stay very busy. That’s key too.

    You’re always an inspiration, Patsy. I’m so thankful we met. Take care, and have a wonderful Thanksgiving. Love you!!

  5. Great post Patsy! I’m sorry you are having to leave the trial, but thrilled that your naturopath figured out you have celiac desease (we know quite a few people in that camp) AND that your goal is not to worry until there’s something to worry about. Better (for any of us) to spend our time observing and participating in Life rather than manufacturing a million scenarios of “what ifs” (pretty crazy when you think about it). Hope you have the BEST THANKSGIVING EVER and know that what happens a week from now is, well… a week from now! :-) Dave & Shannon

  6. Patsy, you are proof that better results happen when the mind and spirit to the patient is positive and active. When we last talked I was so afraid the kidney issues would take you off the trial. I loved reading your description about living and looking for the joy. So, I will pray that joy finds you daily. You are a true blessing and role model for your teal sisters. EnJOY your family and sweet husband during the upcoming holiday season.
    I wish you enough,
    Phyllis

  7. Marie

    Yeh Patsy! Life is such a beautiful gift…to be treasured and enjoyed everyday. I have missed you and the other ladies in the support group. I will be back in town now for much of the winter, with just a few trips to Florida and Virginia (that is part of my living and enjoying) look forward to seeing all of you soon.

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