I Am Furious: Learn From My Cancer Story About Why You Must Become Your Own Medical Advocate

By Pat Wetzel, Founder of the Anti-Cancer Club

Cancer has so many stages, and not just the medical ones.  I’ve been through three rounds of chemo, got a great remission and I’m simply exhausted.  But as I learned, you can never relax. You must step up and be CEO of your own health, not just during treatment, but for the indefinite future.

I’m a reasonably astute medical consumer, or so I thought. I understood all the drugs I took; I understand my disease; I understand the profound impact of lifestyle choices and I make wise ones.  I was even married to a surgeon for 13 years so I have no illusions about the medical establishment.

But beyond recovery, you now have a new task: Following up on all those drugs and radiation that were pumped into your system. Pat Wetzel I am Furious

Your doctor may or may not warn you about the after effects of cancer treatments.  Livestrong and the University of Pennsylvania have put together an excellent tool to help.  This web based app allows you to enter your treatment history and see the most likely long term side effects to watch for. I advise everyone to try this, and to take the results to your next doctor’s visit.  Force the issue of survivorship care, because most likely, it’s not on your doctor’s 5 minute agenda.

Click HERE to access the Livestrong (Survivorship) Care Plan Powered by PennMedicine’s OncoLink.

My story highlights the need to take charge, long after treatment is done. Please share this with others, to help get word out and to hopefully spare someone else my experience.

I’ve been having trouble with my leg for over a year. I presumed it was a tennis injury that just wasn’t healing, so I finally broke down and got some x-rays.

My bones have decayed. Alkylating agents. So I googled the topic and found:

“Therapy of lymphoma with high-dose glucocorticoids and alkylating agents may result in premature bone loss, increasing the risk of vertebral and hip fractures.  In patients at least 50 years of age, 54% of men and 40% of women had baseline osteopenia.”

I am furious.

I’ve been through 2 major rounds of chemo involving Cyclophosphamide and Bendamustine, both of which are alkylating agents. I had NO idea that they might impact my bone density. The FDA warnings have no info. My doctor said nothing. Even after he saw me limping, almost unable to walk, my oncologist didn’t make the connection between the drugs and my bones. Bones aren’t his specialty. Bone docs don’t talk to cancer docs.

I am furious.

Cancer is hard enough. We bone up on the medical treatments (no pun intended);  muster our courage to pour poison into our veins; persevere through sometimes horrendous and even life threatening side effects. But it’s never over. Cancer is the gift that just keeps on giving.

The cancer community desperately needs survivorship care. But when will it be a reality? How do you get information to trickle down to the local provider? How do you install the notion of a totally new type of care into a rigid and inflexible system that is physican-centric not patient-centric?

Einstein once said that you can’t fix a problem with the same energy that caused it. How can we expect physicians who didn’t even believe in chemo brain much less other side effects to provide survivorship care?

I am furious.

Had I known, could I have done something? Some studies are using (still more) drugs (most likely with side effects of their own) to combat the bone loss. Perhaps I could have done more weight bearing exercises. Would that have helped? I’ve been active in sports my entire life. Now what? Am I to lose this too?

No one told me that there was yet another phase to this ongoing nightmare named cancer, where I had to take charge, be brave, figure it all out for myself yet again. I’ve worked through the treatments. I’ve worked to figure out the diet piece. I’ve worked to dramatically change my reaction to stress via daily meditation (I was even more upset before I meditated this afternoon!) I took charge of everything I could because when it comes to cancer, there is no one to figure it out for you. You are on your own.

I am furious.

Cancer takes so much away. We can lose our financial stability that it took years to build; some of us lose our homes, some of us lose our livelihoods. Friendships are strained when no one knows how to relate, and they fall away. This is just the last straw. Losing my mobility has been hard enough, but to find that it may be impacting my skeletal structure is too much.

And the worst part? I can’t get a hip replacement until I can move back into my house. I can’t move into my house because my insurance company, Allied which is a subsidiary of Nationwide (who is NOT on my side) has been stalling for over FIVE MONTHs on paying a claim for water damage that occurred in AUGUST while I was out of town. As a result, I’m living in a rental with little or no furniture in most rooms and a staircase that makes getting up and downstairs an overwhelming experience in total hip pain.

I am furious.

I guess I want to believe that since I toughed it out like such a trooper, I could look forward to a period of life again. I feel betrayed. Perhaps that’s unfair. I would have made the same decision to go ahead with treatment, but I wish I had JUST KNOWN about the long term implications. I just wish I had a clue what issues are related to survivorship and the various drug combinations I’ve had. If I’d been more informed, I could have been more alert to possible problems.

Why in the world does no one address these issues? For me it’s too late; I hope that for someone else reading this it won’t be. Add survivorship follow up care to the lengthy list of things you already have to take charge of. Because when it comes to cancer and health care, you are on your own.

About the Author:

Pat Wetzel

Pat Wetzel, founder of Anti-Cancer Club

Pat Wetzel is the founder of the Anti-Cancer Club.   In 2009, she was diagnosed with a rare lymphoma.  She closed down the investment fund in which she was a partner and focused on dealing with her cancer.

Cancer, she realized, is characterized by a loss of control as medical tests, treatments and protocols take over one’s life.

How does one take control of one’s health, even in the face of cancer?  What are the factors of health in the context of cancer?

Critical research by Dean Ornish, MD, David Servan-Schreiber, MD, Jeanne WallacePhD, CNC, and others all pointed to 4 key factors over which you do have control: Nutrition, Exercise, Stress Management and Connection with Other People.

Pat created the Anti-Cancer Club to shorten the learning curve for others and provide quality, actionable information for crafting a sustainable, anti-cancer lifestyle, one step at a time.  Click HERE for the Anti-Cancer Club website.

Please note the following – The Livestrong Care Plan referenced herein is intended for survivors of adult cancers. The Children’s Oncology Group website, Cure Search, is a wonderful resource for survivors of childhood cancers. In addition, childhood cancer survivors should encourage their healthcare team to review the extensive guidelines for long-term care developed by the Children’s Oncology Group.

Lots To Live For, Inc. delivers comfort during cancer. Please visit our website at www.LotsToLiveFor.com for products to reduce and relieve the unpleasant and uncomfortable side effects of chemotherapy, radiation therapy and cancer surgery.  We also offer a collection of resources to help patients along their cancer journey.

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11 Responses to I Am Furious: Learn From My Cancer Story About Why You Must Become Your Own Medical Advocate

  1. Nadine says:

    I hear you. People just don’t get it – this is big business and you are just a consumer, nothing more. Big business knocks out the competition and the public is forced to use what big business offers. It doesn’t have to be this way. You are your own advocate and everyone needs to know the truth about what they are conning you into taking.

    The reason your bones are deteriorating is the drugs chemical effect on the body. They have known this for years.

    Here is the truth about cytotoxic and alkylating drugs: http://wp.me/p28FKS-43

  2. My husband was told he has Non-Hodgkins Lymphoma! he is on chemo. He starts his third round tomorrow Feb. 2nd 2015. His hip and leg have been hurting him all this week?

    • Pat Wetzel says:

      Hi Mary Lou,

      You should check with your oncologist about that. I doubt (but don’t know) that any bone density issues would arise that quickly.

      The pain could be a million different things. For me, Rituxan (which may be part of your husband’s treatment) cause more joint pain than anything I’ve ever experienced (or care to experience again.) The docs didn’t get it; not a “normal” side effect so they dissed me.

      Hang in there! Carpe Diem.

  3. Lexi Timmons says:

    This is so true and is unfortunately not the first, second, or ever third time I’ve heard stories like this. You’ve pointed out some major gaps in our oncology system. Doctors don’t talk, they don’t have enough time, and cancer often leaves patients too emotionally stripped to take the initiative to find out for themselves how their healthcare plan can be improved.

    I have found one resource that may give patients plenty of cancer-specific research, emotional support, and other recourses. Check out cancer.im

    I’m so glad you’re finding your own ways to stay healthy with diet and mediation. I hope you continue to write and improve the cancer journey for your readers.

    Thank you,
    Lexi

    • Pat Wetzel says:

      Lexi,

      I’ve personally come to the conclusion that real health lies in a balance of nutrition, mind/body modalities (including exercise) and social connection. David Servan-Schreiber and Dean Ornish (among others) make an excellent case for this balanced approach.

      It really boils down to deciding to take charge and get on a path of sustainable change. But as much as I do follow this, I never cease to be surprised at the curve balls that come one’s way.

      I love the old saying, “Man plans, God laughs.” So true!

      Carpe Diem!

  4. Shared this great blog post with the Breast Cancer Yoga community – Thanks

    • Pat Wetzel says:

      Thank you! My purpose is to let everyone know that it doesn’t end with treatment. Years out, you still need to be vigilant and (unfortunately) on the lookout for potential issues.

  5. Hear you, Pat. As a 24 year and counting breast cancer survivor as well as working with those going through cancer, I hear the stories and have my own. I feel your pain and frustration. Some of this makes the case for following a more holistic approach although that isn’t for everyone.

    At this point in my journey, I have developed high blood pressure which I believe is a long term effect of treatment. Fatigue and brain fog are still companions. Bones take care to stay healthy. As with yourself, I diligently monitor lifestyle – diet, exercise, meditation, etc.

    We do need better survivorship information and awareness of the implications of current treatment. Doing your own research is key to being informed. However, it would be more helpful to know the ramifications up front so we can make informed decisions.

    Big hugs,
    Barbara

  6. Pat Wetzel says:

    After my hip replacement, it’s back to a more holistic approach! Every now and then modern interventionist medicine is called for!

    Thanks Barbara!

  7. Vicki Heyman says:

    I am so glad I found this web site. I am half way through radiation therapy and have been crying since I got home from treatment today. Everyone at my cancer center is wonderful, but few have experienced what it is like to go through this. I have radiation burns on my breast and throat and it itches like crazy. They have given me ointments and creams to control the itching. The only thing that helps is a good dose of narcotics to put me to sleep. There has to be something that is effective for this. I have a life. I don’t want to sleep through it!

  8. Carol says:

    I’m so sorry and completely understand this frustration. I have been in treatments off and on for stage IV breast cancer for four years, trying to do alternative treatments in between and alongside conventional. I was almost paralyzed from a compression fracture in my back from a tumor growing into my spine. As I laid bed-ridden in the hospital bawling my eyes out in isolation, I got online and found Vital Nutrients collagen. I ordered it and it arrived by time I got home. I ditched the back brace and pain meds in a couple weeks. I also had no choice but to go back to work the next morning following my hospital discharge. I struggled through driving stick shift with a fractured back. I did radiation on that tumor and they were fearful of my whole spine collapsing if the bone didn’t heal as the tumor shrank. I believe that collagen saved my back. I’m very active and strong. I feel like my back is fine after only a few months since the hospitalization. I highly recommned the collagen for your bone health. I also used an essential oil called “Regeneration” from Heritage Oils which is supposed to strengthen bones. I’m undergoing chemo now and still working full-time. It’s always a battle with those side effects though!

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