Living with Advanced Cancer

  • 30 July 2013

lily-pad

Advanced cancer.

I have it. Does this mean I have advanced to a new level, acing an exam to get there?

Progression.

I don’t have it–yet. Does this mean graduating to the next level, making progress?

I don’t think so.

Advanced cancer is a fancy moniker for metastatic or Stage IV cancer. Progression means the cancer has grown since the last scan. We patients live from scan to scan, like a frog jumping from lily pad to lily pad, hoping not to fall into the water looming dark and murky just outside the zones of safety.  And I haven’t even touched on the financial consequences of receiving this type of diagnosis, hopping from one insurance loophole through to the next.

As a clinical trial patient, I must follow the protocol spelled out in the contract I signed. That means I must endure a bone and CT scan every three months to see if cancer has returned or progressed. It’s not a death sentence, but it’s an edge-of-your-seat kind of existence, a life-long sentence.

How does one live with this kind of uncertainty? The best one can. My morning starts by taking pain medication, the kind that is a controlled substance. Who knew I would be doing a drug to which Michael Jackson was heavily addicted. Another pain killer I take every four hours. My day ends with taking more of these high-end pain relievers as well as heart, nerve, anti-anxiety, anti-nausea, and constipation drugs. Beyond all these meds, I look for symptoms that my cancer might have returned and journal any changes. I travel four hours each way to have a treatment every three weeks.

All of this necessary medication doesn’t bring me down, and my sleep patterns have been excellent. Activities with which I try to occupy/distract myself include playing ukulele, writing, hanging out with friends, playing games, and watching TV and movies. Most of the time these work. All of the time prayer works, and for that I give thanks to all those who have lifted me up.

Maybe my life at this stage can be summarized with haiku:

Cancer’s talon grips

Longing to take hold of me

Hope stuns it senseless

 

Bleak rain-filled daylight

Filters through clouds gray as stone

Praying hands heal sky

 

Hawks winging upward

Catching draft to soar beyond

Land on outstretched arm

 

Hope is the key to living “the good life” with this type of cancer. Good news can be found in all the new drugs coming out of cutting-edge research, changing the way doctors view and treat advanced cancer. Good news can also be found in the plethora of resources existing for those living with breast cancer that is not curable, from treatment options to clinical trials and financial support to discussion boards and support groups.

I may not like progressing to this kind of Advanced Placement class, but I’m learning how to cope, and striving to pay it forward. We patients are never alone, and never will be.

 

  • http://none karen sutherland

    dear jan,

    your indomitable spirit, your deep desire to live and live well, and your love and concern for all who are enduring the harsh emotional and physical challenges of advanced breast cancer is nothing short of incredibly amazing and deeply inspirational. the haikus you write are so beautiful, simple words rendering images that resonate with such meaningful feelings. and hope – it is so true, it is the key. thank you so much, dear friend, for sharing the sites that offer the means to help in so many areas that are so very hard to deal with . this was truly a most beautifully crafted post, a deeply personal and honest portrayal of what a day in your shoes looks and feels like, as well as conveying an uplifting message of hope. it is what we need, what we search and strive for and often miss the mark on because of pain, hardship, and feeling lost and alone – a balance and perspective to comfort and encourage us to keep on keeping on.

    dear jan, I am sending you my love and the bright, shiny light of hope to help you find your way.

    XOXOXOXO,

    karen

  • http://www.asenseofplace.com Ronnie Hughes

    Well done Jan on the ukulele playing, the guaranteed sound of happiness.

    And on the straightforwardness of this report of how your precious life is for you.

    Much love from over here,
    Ronnie xx

  • http://janhasak.com jhasak

    Oh, Karen, your words truly humble me. Thank you for sending your love and light of hope, which I can feel in myriad ways. For example, when I opened my doors today to create a cross-breeze, I heard the early-morning birds cheerfully calling to one another. I believe your light of hope manifested itself in their twittering. Your encouraging words mean so much to me, dear friend. xox

  • http://janhasak.com jhasak

    Thanks, Ronnie. You are absolutely “right on” about the ukulele playing. From “Sway” to “King of the Road”, from “Jamaica Farewell” and “Somewhere Over the Rainbow-It’s a Wonderful World” to “Eight Days a Week,” there’s something for everybody in the retirement homes where we play. I am thoroughly enjoying the sounds and strumming possibilities of this unique instrument. Life truly is precious. Much love to you, too. xo

  • http://www.facingcancer.ca/ Catherine

    You’re just wonderful, Jan. Not only for the endurance or honesty, but just ’cause I think you are wonderful! I’m glad you are having results that keep you steady, and am also very glad to hear you are tolerating the drugs. You are in my thoughts, and quite frankly, I’m going to hope that even better than staying put, the cancer decides to up and NED itself.

    Now, for that ukulele playing. May I please request a video or a recording?! I’d love to hear you in action.

  • http://janhasak.com jhasak

    Catherine, you are very sweet. So far, the drugs really are doing their job, keeping side effects at bay. Thanks for your beautiful thoughts about the cancer NEDing itself. NED as a verb is a cool concept.

    I’ll have to get busy with making a recording of my uke playing. I’m not very good at it, but what counts is that it improves my outlook on life.

    Thanks a million for your comment.
    xo

  • http://www.thebigcandme.blogspot.com/ Renn

    JAN! So happy to see a new post from you! I too love the “NEDing” concept. And Thank God for pharmaceuticals! And I second the Youtube request for your ukulele playing at the retirement home! Just set your camera in the lap of a napper and press “on.” ;-)

    Kidding aside, you sound good. I love the haikus. You are an inspiration!

    I think of you often and send healing light your way.
    xoxo

  • http://janhasak.com jhasak

    Thanks, Renn, for your encouraging comment. No question those pharmaceuticals are working. I’ll just have to get that camera going, and love the idea of the video recorder in the lap of a napper. There are several of those in the audience from whom to choose! I can feel your healing light and absolutely love your spirit, my dear friend. Write on! xo

  • http://www.nancyspoint.com Nancy’s Point

    Hi Jan,

    Your new treatment regimen sounds rigorous, but I’m so glad you are part of this trial. It sounds like you are managing things quite well, but then you never have been one to complain.

    You have so many talents, Jan! You’re always surprising me with yet another one! Wonderful haiku and yes, you really should do the ukulele playing video! You have a real fan club out here you know!

    Sending you much love and support. I think of you so often, Jan.

  • Elizabeth J

    Nancy, I’m still new at this advanced cancer thing. I received the diagnosis of bone mets this spring. So far treatment is not too intense (daily femara pills and monthly faslodex injections, plus pills their side effects). But, it is the knowing that this eventually progresses, that then treatments get more intense, that eventually you run out of treatments that work, that is still unnerving. I get another PET scan next week.
    I, too, believe in prayer. I had inflammatory breast cancer, so it is actually a miracle I’ve gotten this far. And, I play piano. I can play classical (Bach, Beethoven, etc.) and contemporary Christian, but I can make the old hymn really rock with southern gospel style playing!
    When I read blogs like yours, it gives me hope that I can keep actually living, not just merely stay alive, if this cancer advances.

  • http://Audreybirt.blogspot.com Audrey

    Oh Jan it’s so good to see an update from you. Your words convey both a peaceful and spiritual Jan to joy filled Ukulele playing. What a wonderful spirit you have and how you underplay the challenge of the daily and the monthly that you face too with such quiet courage. You are indeed an inspiration. Sending love to you Audrey

  • http://janhasak.com jhasak

    Thank you, Nancy, for your well wishes. How heartwarming to know I have such a fan club! I’ll just have to keep practicing and get that uke really stoked. Sending love back your way, xox

  • http://janhasak.com jhasak

    Oh, Elizabeth, thanks so much for your comment! I’m sorry you have the bone mets diagnosis, but there is hope, no question. Playing piano must be so therapeutic for you. I wish I could hear all your playing. The old hymns really get revitalized with a southern gospel flavor. Keep up the activities; they really do help distract from the unnerving reality of this unnerving disease. I’ll pray that you can stay on your current treatment for a long time and that your PET scan shows good results; I get my scans next week, too. Please do keep in touch. We are not alone. Hugs, Jan

  • http://janhasak.com jhasak

    Thank you so much, Audrey, for your beautiful sentiments. You express yourself so eloquently in your encouraging words and spirit. I’m glad I can be an inspiration to others. That’s what makes writing blog posts relating to breast cancer so important and worthwhile. xox

  • http://www.accidentalamazon.com/ Kathi

    Jan, it’s so great to read a post from you. If anyone can articulate a way to perch gracefully on this high-wire that is metastatic cancer, it’s you. And know that part of your safety net is here, in cyberspace, from all those in our blogosphere who care about you, ready to help you back up when you need it. Much love to you, dear one.

  • http://www.mbcn.org Katherine OBrien

    Hi Jan
    “How Do You Live With MBC” is a question addressed in this video. Hopefully it also shows that we are not alone, too:
    http://animoto.com/play/P4OmE8j0gZyybiyFRl86Pw

    Rock on,
    KOB

    PS:

    (As you might know, I volunteer with MBCN, wanted to make sure you knew about the forthcoming conference)
    Registration Reminder Video:
    http://animoto.com/play/azjq8n0OVu2y7jbpzPHThg

    Here is a link to the agenda with specific topics and speakers: http://mbcn.org/special-events/category/agenda-2013/.

    Here are the details in a nutshell:

    The Metastatic Breast Cancer Network’s (MBCN’s) 2013 Annual Conference In Conjunction with MD Anderson.

    WHO: People living with metastatic breast cancer and their spouses, partners, friends and caregivers.

    WHEN: September 20-22, 2013.

    WHERE: Houston Marriott @ Texas Medical Center.

    MORE INFORMATION: http://www.MBCN.org.

  • http://janhasak.com jhasak

    Thanks a million, Kathi. That safety net is extremely secure with all of you wonderful cyberfriends undergirding it. Much love to you, too! xo

  • http://janhasak.com jhasak

    What a great resource, Katherine. Thank you very much for sharing it with my readers and me. This conference sounds fabulous; wish I could attend but I have another commitment at that time. I’m sure many patients and their support teams will be blessed by it.

  • http://www.paw-paw-salad.com/ Liz

    Hi Jan. What a vivid description of life with MBC. I am so glad to hear that you are getting cutting edge treatment and receiving lots of support. I hope your pond is absolutely covered with beautiful, robust lillypads!! As I’ve mentioned before, I am trying to teach myself the uke (inspired by life in the tropics!) and am most inspired by your uke-playing skills…I can only hope to be good enough to play for anyone apart from my family one day! I agree – it’s an incredibly fun instrument, so beautifully suited to a sing-along….and what could be more life-affirming? I am also voting for that video!!! xxx Liz

  • http://janhasak.com jhasak

    Thanks for your vote of confidence, Liz. The uke is so suited to a sing-along, perfect to put a smile on faces. I’ll really have to get that video recorded. MBC’s a challenge, no doubt, but we do what we have to do, and try to make the most of our circumstances. I appreciate your comment very much. xo

  • http://www.miraclesurvivors.com Tami Boehmer

    Jan,
    My daughter plays ukulele too! So glad you have faith, loved ones and creativity to cope. I can identify with your lily pad reference. I’ve used jumping from one ice block to another, but I like yours much better. Great hearing your voice on the line tonight. Big hugs to you!

  • http://janhasak.com jhasak

    Tami, I’m so happy to learn that your daughter plays ukulele, too. It has so many benefits. I’ve always liked water lilies and that’s why I used the analogy. It’s tricky jumping from one pad to the next, but God provides a net and we’re getting used to it, aren’t we? It was likewise wonderful to hear your voice on the line. We must stick together! Hugs back! xox

  • http://www.womaninthehat.com eileen@womaninthehat.com

    Beautiful haiku; beautiful spirit. Joining all those who lift you up with some well-deserved hugs. Especially for those long treks to treatment. Yikes!

  • http://janhasak.com jhasak

    Thank you, Eileen, for your cyberhugs and sweet sentiments. xox

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