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One Year on Chemotherapy…

Anniversaries can be bittersweet events.  On one hand a wedding anniversary, for example, can be a celebration of undying love, patience and steadfast devotion that says “Hey we stuck it out, through good times and bad, through temptation and frustration but we persevered – and we made it work.  Here’s to us!”

On the other hand, the anniversary of a loss – whether it be of a loved one, a beloved pet, a career – can be a time when a nearly healed scab gets ripped off to reveal raw, painful emotions which were thought to be finally under control.

I am celebrating an anniversary of sorts myself today:  I have been on some form of chemotherapy for my cancer for one year now.  365 days.  I have mixed emotions about this, but when I weigh it all out, I conclude that I am truly grateful to be able to celebrate this particular anniversary. 

It was a little over 12 months ago when I was diagnosed with a challenging cancer;  I was actually unsure at diagnosis if I would be around to celebrate another birthday.  Thankfully,  I passed that milestone this last week too, and in pretty good shape, all things considered.  For this I am extremely grateful. 

When I reflect back on this past year, I can’t help but observe a few things about my cancer journey that I feel I should share with others in a similar situation, especially those just recently diagnosed.  Maybe someone without cancer can benefit from these pearls as well.

  1. Don’t Sweat the Small Stuff.  Really.  I know it may sound like a cliché, but I speak with some authority here.  Most of the stuff we worry about on a daily basis never materialize.  Most problems that we anticipate have a way of sorting themselves out before they ever present themselves to us.  Worrying about a bunch of stuff that you can’t control only serves to stress you out and shorten your life – stress hormones are a bitch on your body.
  2. If you don’t already, you’d better learn to appreciate and respect your family.  They are the ones that will be with you through the miserable times, the chemo, the radiation and for some, the humiliation of having someone take care of basic hygiene for you when you’re physically unable to yourself.  Believe me, not many of your work buddies will volunteer to come over and flush your PICC line for you (or worse).  I have seen it first hand in my own family and experienced it myself; Parents, kids, siblings, aunts, uncles and cousins literally coming out of the woodwork and stepping up to the plate to assist. It may not be in the way you always need, but they’re trying and doing what they can.  They’re there for you.  They have a sense of commitment that most others can’t fathom.
  3. Along those lines, a cancer diagnosis has a way of revealing who your true friends are.  Close friends who you thought would be there for you and thought actually gave a crap mysteriously become unavailable, stop calling or emailing,  Perhaps they can’t deal with it, perhaps they don’t know what to do, or say – I am not sure the reason.  On the other hand, friends and co-workers who I would have considered mere acquaintances suddenly extend themselves in ways you couldn’t have anticipated and really come through.  Close friends become closer and consistently show love and altruism beyond comprehension  It is truly amazing.
  4. Stop to appreciate the simple wonders around you.  As westerners in the dawn of the 21st century, many of us seem to have our priorities all screwed up.  We race around like crazies, trying to multi-task during every waking hour of the day (and sometimes when we’re not awake), feeling very industrious yet not really moving forward.  My suggestion is to take some time to appreciate the beauty and wonder of nature around us (even in a crowded metropolis, a city park can be a wonderful sanctuary).  Technology has certainly made our lives easier in some respects (ease, speed and access to unfettered communication), but it has also isolated us from each other.  If you’re so pre-occupied with being entertained 24 hours a day that you must wear i-pod headphones everywhere you go, you’re really missing out on a lot of potential fascinating interaction with others.  Texting is not a high form of interpersonal communication.  Turn the technology off for a few hours each day and enjoy the wonders around you – you may learn something in the process.
  5. Hopefully a cancer diagnosis will not have to be the impetus to do something meaningful for others.  Volunteer, help a neighbor, reach out to a recent grad and give them some advice, see how you can assist someone less fortunate.  I’ve found that by changing my focus on others it has allowed me to tolerate my cancer and the various adverse events that come with both the disease and the treatment much better.  Not an easy thing to do when you tossing your cookies after chemo, but at the very least, it takes your mind off of your own problems and helps to put things in perspective, especially when you’re helping others who have it much worse.  Believe me, there is always someone who has it worse.
  6. Finally, try hard not to let your diagnosis control your life.  Easier said then done at times, but trust me when I say if you let your cancer control you and what you do, then you’ve already lost the battle.  You have to fight like hell to beat your cancer.  Be your own advocate, research treatments, push your medical team, make up your mind to control the disease, don’t let it control you. I know it must be tempting to use a cancer diagnosis as an excuse not to do things, to give up, to submit.  If you do, you’ve begun to let the disease control you, instead of controlling the disease.

Well that’s my sermon for today!  Ha Ha.  Some of my regular followers probably wonder what’s gotten into me, since most of my posts tend to be resource or issue oriented advocacy posts, and not your typical blog fare.  I promise to be more diligent in posting research and resources in the near future; I’ve been busy living.  In the meantime, Happy Anniversary to me.  I’ve got a life to live.

  1. August 15, 2010 at 10:17

    First, Happy Anniversary! Anyone that knows you wants to celebrate with you because we arelucky for having you in our lives! Your words were moving and a call to action for everyone with or without this diagnosis. Slow down, look around,and LIVE today because none of us know if we will have a tomorrow. Your family has been wonderful and Debra has been an angel. You’re an inspiration to many people. Thanks for sharing how you feel and what you’ve learned along the way because it’s wisdom for us all.
    Your friend always,

  2. Bobbie Meola
    August 15, 2010 at 10:49

    I loved your post! So true! Thank you for the words of wisdom and HAPPY ANNIVERSARY! There will be many more! Bobbie (Kevin’s Fiance)

  3. Joanne Simmons
    August 15, 2010 at 13:08

    Happy Anniversary, Mark, and thanks for taking the time to share your journey. You continue to amaze us all … your positive outlook, love of life, and continuing ability to inspire those around you in spite of your own challenges, pays tribute to the good man you are. I’m glad to call you a friend. 🙂

  4. Suzanne McClure
    August 15, 2010 at 16:59

    Wow, Mark. You hit the nail on the head with this post. I just passed my two year chemo/treatment anniversary in July. In battling this disease, it’s so easy to lose sight of what’s really important, especially when bogged down with all the daily dealing we have to do. Thank you for (re)opening my eyes.
    Happy Anniversary, my friend!

  5. Liz Baca Lollman
    August 17, 2010 at 02:43

    What a wonderful piece this is. Truly, magnificent. Glad that an old friend can be there once in a while if you need a laugh or a smile. 🙂 Don’t forget you’re still the guy that looks like Leonardo. Happy Anniversary! Congrats to you and all your family.

  6. beverly carr
    August 29, 2010 at 19:06

    U GO GUY!!!!!! We think of u daily—-HAPPY, HAPPY ANNIVERSARY!!!! I have a very good friend who just received a diagnosis of cancer–She had her first week of chemo last week ( sitting in a chair for 6 hours 4 days a week) –I am emailing her your words–I’m sure they will inspire her as they have the rest of us who love her so!!!!

  7. Alice Hill
    September 17, 2010 at 11:18

    Wow Mark! So beautifully written. I really enjoyed your thoughts and comments. A great big happy anniversary to you!!!

  8. Peggy
    October 10, 2010 at 17:09

    My Mother was recently diagnosed with Cholangiocarcinoma shes never been sick till now.. Our family was discussing quality of life and which treatments we should opt for if surgery isnt an option..

    Has the past 12 months been good?.. how much of your usual routine was changed?.. the discomfort you experienced was it difficult?.. I dont want my Mother to suffer and I want her to have the most comfortable time during this phase of her life. Youve lived with this for 12 months.. any insight into how u coped other with the treatments and the effects of this would be so helpful.

    • October 10, 2010 at 21:23

      Hello Peggy:
      I am so sorry to hear about your mother. The last 14 months of chemo have been tolerable, but I am in late 40s and in good physical shape so I was (fortunately) able to tolerate the chemo regimens fairly well with minor adverse events. Still do. State of mind and attitude make a huge difference. I’m not talking about the sadly mistaken idea that humor or laughing can somehow magically cure your cancer, but rather making up one’s mind that you’re not going to let the cancer run your life; that you’re not as a patient going to let it wash over you like a wave but rather you will fight and try to keep a positive attitude and plow through the chemo, the surgery, the radiation. It won’t cure your cancer, but it sure as heck makes the journey easier. Your mother has to choose what treatment options are presented to her and decide, hopefully with family consultation and through her own education, which one(s) is best for her in her circumstances and with her type of cholangio.

      Everybody reacts differently to therapy and to surgery. Some treatments are available to some patients but not to others because of their particular situation. My suggestion is for you and your mother to research the disease as much as you can and to educate yourself about the disease and the treatments available. Education, in this case, is empowerment. Empowerment allows the patient to at least feel like they have some control over what could be an otherwise uncontrollable situation. As a patient, when you begin a cancer journey you have to “give up” a lot of control and trust your medical team- everyone is doing things for you and to you; If you educate yourself you essentially become part of the team and instead of sitting on the sidelines letting everything happen to you, you are actually participating in the decision process. I can’t stress this enough. It isn’t easy and requires lots of work but it does empower the patient and de-mystifies some of the treatment. Be forewarned that some of the older data on CCA appears dismal but that is because many of the treatment advances have only been in the last 3-5 years.

      Hopefully this blog site will offer some references and resources for you and your mother. Check out these pages from the tabs at the top of the screen. I wish you and your mother the very best successful treatment and a speedy recovery. Please let me know if I can be of any further assistance.

      P.S. – If there isn’t a support group for CCA at your mother’s medical center, then seek one out for general cancer support – it is a big help to see and hear what others are doing to handle their disease.

  9. November 6, 2010 at 19:32

    I just found your blog. As a fellow cancer survivor, my thoughts and prayers are with you.
    Also…Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blogs” with over 1000 other personal cancer blogs at http://www.beingcancer.net, a cancer networking site featuring a cancer book club, guest blogs, cancer resources, reviews and more.
    If you have not visited before or recently, please stop by. If you agree that the site is a worthwhile resource for those affected by cancer, please consider adding Being Cancer Network to your own blogroll.
    Now that you are listed, you can expect to gain a wider audience for your thoughts and experiences. Being Cancer Network is a place to share and communicate.

    Take care, Dennis (beingcancer@att.net)

  10. Helen
    December 3, 2010 at 19:47

    I was diagnosed with cholangiocarcinoma two weeks to the day after my father died and five days before my 56th birthday…..which was the day you wrote this inspiring message. Extremely invasive surgery was performed a few weeks later and today I had my second dose of chemotherapy. I am stronger physically, mentally and emotionally than I have been in years and I owe it to my father. His death has given me the strength to fight this monster, and the monster has given me the strength to grieve him. I live alone, but am surrounded by the most wonderful, supportive, loving, caring family and friends that anyone could ever ask for. I consider myself blessed to have had this happen to me so that I could appreciate what has always been around me. I face whatever the future has in store for me head-on and will not back down from my destiny, whenever that may be.

  11. Ana
    December 28, 2010 at 14:31

    Hello Mark!
    Thanks a lot for sharing your words and strenght with us. I live in Brazil and my mom was diagnosed with cholangiocarcinoma on 2006 and up until now has not been easy to keep her strong to face the everyday battle against this disease. Two huge surgeries were carried out, one in 2006 and other in 2008, now the cancer is back and there is no way to perform any surgery again. The chemo is not worth anymore… the physicians say that is a miracle to have her alive, there ´s no explanation for this… only God maybe… but I´m aware that she now gave up… I am deeply sad, but there´s nothing else I can do…
    Thanks for making the difference for us!
    Wish you luck and strength… And I woul´d like to let you know that there is someone from Brazil cheering for you!

    • January 2, 2011 at 21:32

      Ana –

      I am so sorry to hear about your mother’s diagnosis. She sounds like she had faced her battle with great strength and courage – you are no doubt very proud of her for this.

      Thank you for the well wishes. Hope you had a good New Year’s celebration…I spent mine in the hospital with acute pancreatitis which was secondary to a biliary stent replacement I had done on Wednesday. Ugh – not fun at all. I’m back home now and managing a slight fever but feeling better than I did on Thursday/Friday/Saturday.

      You and your mother are in my thoughts and prayers!
      – Mark

  12. February 3, 2011 at 11:17

    I often say that people in the Western world have their priorities totally skewed: we should all be grateful to be alive without the need for a cataclysmic event or a person such as yourself to make us realise what a great place the world can be.

  1. August 15, 2010 at 10:33

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