Success is Being a Survivor

Author and 3X cancer patient, Jodie Guerrero

Author and 3X cancer patient, Jodie Guerrero

Success means so much – its definition is reflective of the heart & soul of the perceived successor. To me – Success is not just about chasing a dream and securing it – true success is a lot deeper than pushing through a physical barrier to win the prize on the other side.

I believe true success is flying in the face of danger, marching towards the fire and leaning towards the negative perception that your efforts will reap nothing or your existence is un-important.

Success is proving that your hunch was right, your dream was correct and your gamble paid off – NOT because you put in resources to get back (something for yourself). But, rather you gave your all for the good of others, for the delivery of kindness, for love in the form of understanding and ultimately sacrificial leadership for the fulfilment of a need in your community. Success can take many years and in most cases it does. It’s a gradual slope of hard work and its rewards are up there – on top of the mountain.

Why do I believe this? I am a survivor of cancer x 3, medical negligence, a disability as a result and currently 77 doses of cancer treatments to keep me alive and very soon a bone marrow transplant. I’ve seen people lose their fight, right in front of me. I’ve heard people tell me to be quiet and stop fighting for the suffering of others. Success is being a survivor and that’s what I am!!

What do we need to be a survivor? What do you need to be a survivor? A very important element for me has been faith and foundation. My faith is everything and the family who love me, combined with my faith are my foundation. Without a strong foundation – we may topple and fall, either mentally or emotionally. However, many people find other elements of underpinning to keep them strong, through the largest hurricanes of life.

Even with these ropes of strength in our greatest storms, we may still topple – however a secure footing will help us find it easier to rebuild again and seek help when we need it. This may include a shoulder to cry on, someone to take us to medical appointments/assist with medication or someone to call a Psychiatrist. There is nothing wrong with asking for help, I believe it proves our strength and resolve.

Being a survivor takes a strong desire to continue no matter what, a resolve to not listen to the masses or those who do not support you – this may include family and friends. Believe it or not, when we have a difficult health journey, people walk away – even folk who should not or those we thought we could rely on. Some of us often discern these individuals, as they run for the hills and never return, yes – even those who are related to us.

We may not understand this behaviour at the time, but often the ones that run cannot cope with our journey (even if it’s a long-term success) and in the end, we may find that these relationships weren’t contributing to our health anyway. For myself personally – of course, there are days when physically I find my daily duties difficult to fulfil – these days, I discipline myself to know & practice when I need a little extra medication/a little extra rest and a little extra prayer, these things are what survival currently look like for me.

After my Bone Marrow Transplant, I will have less cancer pain and more resolve to survive in a different manner – I will continue forward and enjoy each day blessed and given to me. I will enjoy every day granted to me with the family and friends who love me and the ones that have stuck around – they are the ones we are surviving for. They are the people who value our survival – we may not realise how many people around us cherish our life and the energy we put into surviving, however, I know most of us have a good handful and many more supporters after that.

Treasure the people who cling to you and love your survival – you are worth more than all the gold and jewels, on our beautiful planet – your life and the days you have are more significant than you could ever know – just ask the people who love you.

Thank you for reading, please feel free to contact Jodie at the following email address: Jodie@jodiesjourney.com

Bribing Anxiety

Talking to a group of patients at the City of Hope event.

The author talking to a group of patients at the City of Hope event.

So, the last time that I had my regular appointment was a year ago. I was more than a year past treatment and my blood work came back good, my energy level was good and I had no issues to report. I was told that my complete remission was still in place and that the next appointment would be in six months. As it happens, the treatment that I received in clinical trial for my “moderately severe” matrix of genetic type of chronic lymphocytic leukemia (CLL), mutation status and symptom presentation worked out pretty much perfectly. Time to negotiate. “Let’s make it a year?” I implored. They set the appointment for six months but assured me that they would get together and consider the proposed new plan that I put on the table. A few weeks later I noticed, while checking my records on the online portal, that my next appointment had, indeed, been moved out to a year. And now I have that appointment coming up in a week or so.

I have embraced my remission and attacked life. I’ve been doing more over the past year and am just plain getting after it. I hardly ever say no to an opportunity, I smile a lot, I travel, I explore… And now I’m filled with anxiety. I want to take a nap. Does the fatigue mean that remission is over? I had a strange, very mild rash on my hands that really didn’t itch, but lasted a few weeks. Does that mean that there’s some bizarre infection in my body? My joints have been achy. I’ve had some pretty amazing headaches. Does that mean I have to start adding the term “relapsed” to my cancer vocabulary? Or am I just being a normal human being reacting to the unknown?

I know that I am reacting normally to the stress of cancer and that my responses are pretty much how all of us, at least quietly, deal with all the little things. We are told to take an inventory of everything and always report changes to our health care providers. We do this because some changes can be the early warning trip wire that our cancer has decided to change the rules. So we (and by we I mean I!) will always wonder if the next item up on the “how do you feel” menu is a harbinger of cancer or just the soreness that a 50+ year old guy feels after shooting the rapids in an inner tube for 5 hours. Anxiety and stress is something that gets added to the lives of every single person that is touched by cancer, patients and caregivers. We really cannot banish it from our lives, but we can rein it in.

A week of worry is not going to change the results of the upcoming hospital assessment. I’m either still in remission or not. So I will try to occupy my time and be productive. I’ll cook some fabulous meals for my family, give a presentation to a local civic group, mow the grass, write some articles, research a project… And try to minimize the amount of time I allow the anxiety to actually interfere with my life. I know that I cannot banish it, so I will try to paint it into a corner. Oh, and I’m bringing my doctor a bottle of wine. I’m told he likes wine and maybe a “bribe” will keep me on the one year check up cycle? Don’t give away my secret plan!

Advanced Care Planning – What to Do Now!

This is important! And often overlooked, neglected, procrastinated, or ignored…for many reasons. If you are an adult, you need to think about your future and your wishes and desires in terms of your health care. And you need to discuss these wishes and desires with those close to you. It is only by doing this that you can ensure that your choices will be heard.

Chicago Patient ForumIt is sometimes a difficult conversation to start, but those around you and close to you need to hear you. Start by thinking about quality of life, choices, and what is important to YOU. Think about who you can trust to listen to you and carry out your wishes if you are no longer capable of doing so.

If you are a cancer patient, think about what treatment options are available to you, what makes sense to you and what doesn’t. Do your research, talk to your provider or medical team and talk to those close to you. Then think about those discussions and what is important to you.

This is ultimately an individual and very personal decision. However, family members need to hear and respect your viewpoint, so include them in the conversation early on.

So many times, it happens that when a patient is unconscious or incapacitated in some way, family members get together and try to make decisions. Often, the family members cannot agree on what the patient would have wanted and their opinions and emotions cause conflict, anger and heartbreak. And then, since the patient never made her wishes clear, they are not carried out.

You can avoid this.

Take action now and start the conversation.

Once you have discussed your wishes with family members and loved ones, it is important to fill out the correct Chicago Patient Forumpaperwork. Medical directives are legal documents that will state your wishes and help to see that they are followed. But do not rely on medical directives alone. Be sure to talk to family members or others close to you.

According to a recent article in the New York Times, large national studies showed that although more patients are completing medical directives, these directives are not always available to hospital staff when they need to be. Patients often keep them filed at home and they do not find their way into patient medical records or into the hands of those caring for the patient in an emergency situation. Be sure and make your wishes know to those closest to you and give them a copy of your directives.

Advance Care Planning is also a process. You can change your mind and may do that as time progresses. Be sure and update family members as your wishes change.

You do not have to do this alone. There are numerous avenues of help.

Resources

There are many resources that help with Advanced Care Planning. One good website is The Conversation Project.

Here, you can find information, a “starter kit” to help you get your thoughts together and start the conversation with your loved ones. This kit is available in Spanish, French and Mandarin as well as English.

There is also a PDF on how to have the conversation with your doctor, in Spanish and French as well as English. The website has a blog with patient stories and stories from staff members and advisors.

MD Anderson has an entire web page dedicated to Advance Care Planning . Specifically for cancer patients, this page was developed by an interdisciplinary team of doctors, patients, social workers, health educators and other health care professionals.

On this page, you will find step by step guidelines on how to start discussions with family members, talk with your provider, assign a family member to be your spokesperson and how to complete the legal paperwork necessary. PDFs are available in English and Spanish.

There is also a 5 part video series explaining the process of Advance Care Planning in depth with patient viewpoints and advice on how to make the decisions and discussions go as easily as possible.

The MD Anderson web page also includes information on Advance Medical Directive documents such as Living Wills, Power of Attorney and Out of Hospital DNRs (Do Not Resuscitate) with links to the legal documents and instructions and advice on filling them out.

This page is an excellent resource and also includes a number to call for further questions.

Don’t hesitate. Start the conversation now.