To Blog or Not to Blog, That is the Question

Author: Gloria Dunetz
August 26, 2009

Latest posts by Gloria Dunetz (see all)

Since my last entry I’ve been doing well on my Xeloda treatment. The dreaded hand and foot syndrome is annoying and hard to control but I am familiar with it so I just cream myself and hope for the best. Stomach problems occur at the end of the pill regimen and that is hard to take. Xeloda is what I consider a kinder drug but of course that is relative.. When on this drug one can actually feel good enough to forget that they are battling a life threatening disease, but when the side effects become too severe you must back off of the drug. So I zig zag around my meds each day in the hopes that tomorrow the sides will subside. And they do. That’s the good news.

I like to blog but the question always rises whether my blogging helps others deal with Breast Cancer.. I very rarely get comments so I don’t know who’s watching or if anyone is watching. I try to convey helpful discussion about how to deal with this disease in order to help others have some semblance of a normal “abnormal” life. For those of you who might read my blog I would so appreciate hearing your stories and comparing notes. I’ve been dealing with metastatic breast cancer for 5 years and am deeply involved in keeping my ear to the ground to get whatever information there is available and there is plenty. I suggest to anyone fighting breast cancer to learn all about the options for your care. I suggest you go into partnership with your oncologist instead of being the good girl patient who just follows orders. I have a unique relationship with my oncologist because we’ve known each other for 12 years and because my husband is working with him to fund a clinical trial. As much as we feel our doctors are GOD, they are not, and some actually want your input. I am always looking for the next drug that looks promising and relay that to my oncologist. They cannot possibly keep up with all the literature. Breast Cancer can be a lonely disease but if you surround yourselves with people who care about you and will listen to you and are involved you will feel much less lonely.

I have had a unique problem since discovering my disease. I express the Cancer on my scalp. At present there are at least 20 small lesions. I’ve desparately been looking for someone else struggling with the same problem and have come up empty. I’ve said before in my blog that my Cancer was discovered on the skin. The skin is your largest organ and you must be vigilant about going to a Dermatologist to be checked regularly. I would never been blessed with 5 years life had they not discovered the recurrence of my disease had they not biopsied a lesion on my skin.

KNOWLEDGE IS STRENGTH!

Comment


  • Diane

    Hi Gloria. I have been following your blog for some time and I do enjoy reading your posts. I am sure there are other like me, so I hope you do continue to post.

    I was diagnosed with breast cancer ten years ago. I had a lumpectomy and sentinal node biopsy. There was no spread to the lymph nodes. I had chemo treatments and radiation therapy and things seemed good. Three years ago I had a relapse and went through ten months of taxol and cytoxin. I then went on a “vacation” from chemo as my oncologist calls it. That lasted a little over a year and scans revealed some new growths here and there, so I went on taxol and avastin. I have been fortunate that my body responds well to treatment and now I have been on “vacation” for the last three months. My scans have been stable and I am feeling great. I enjoy this time feeling good while I can. I realize I very well may have to return to treatments, and I am fortunate that I am just ten minutes away from The James, a great research and treatment hospital.

    I agree that you must not sit back and let your oncologist do all the work. My oncologist is wonderful and I feel she appreciates any information about my treatment that I can add to the mix.

    Thanks for sharing your story.

  • gloria dunetz

    It was wonderful to hear from you and appreciate your taking the time to respond to my blog. Sometimes I get a bit frustrated not having people comment. All I can say you and I are strong, in control and work hand in hand with our doctors. We are heroes as all of the people dealing with treatment for cancer.

    It is our goal with this organization to make sure that every patient becomes aware that before a woman undergoes chemo, the doctors avail her of molecular profiling which targets medication to the individual molecular profile of each person’s tumor. I do not get vacations from my drugs but they almost always stop working at some point. That is the reality of our disease. Side-out foundation will be funding a clinical trial for metastatic breast cancer patients using Molecular Profiling to choose correct drugs that will work on one specific individual’s camcer/ Breast Cancer is the most funded type of Cancer. We are still using archaic methods to attack these cells.

  • Marti Decker

    Keep Blogging is my response. I just saw Julie and Julia and look what became of Julie’s life thanks to her blogging. Who knew??? I think you are the most courageous and inspiring person in my life and I’m sure there are others out there who will find you through this marvelous website and your blog about your personal challenges.

    We had soooo much fun in Florida last week and by the way, did you tell everyone that you left cancer home to house and horse sit? It was a great furlough for both of us.

    I had lunch today with some friends and there was a young gal sitting at the next table with a bandana on eating and laughing with friends. The bandana was not because of a bad hair day, it was definitely a no hair day but she was out and about. It gives us women an A plus for stubbornness and an acute desire to fight and win. KEEP BLOGGING! We may not always respond but we do listen. Much love as always, Your favorite sister, Marti

  • Pam Johnson

    Going on Xeloda………. Nothing else working on Advanced Breast Cancer. Was stable on Gemzar for two months. Anyone, have good results with this drug….? Thanks…


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