What Am I Fighting?

Posted: April 13, 2011 in Uncategorized

For some reason, the six month point in my breast cancer treatment has been a brick wall. The momentum I had seems lost. Trying each day to prepare for the six weeks of radiation has proved futile and frustrating. The reality has set in as to how difficult it is going to be to continue. The fear of becoming exhausted from the treatment and falling further behind on my life is with me all the time. The extra demands on my family for transportation alone are making me feel hesitant, as well as the fact that fatigue will be the order of the day for me, the mom, the caregiver, the doer, the thinker.

Looking back and remembering what it has taken to get this far is causing emotions I neither expected or want right now. So many days behind me already, hard work and sacrifice by all involved. Moving forward into radiation is like knowing ahead of time that you are going to come down with an illness that will make you feel unwell for an extended period of time. Understanding what to expect,  I’ve tried to plan and prepare for any obstacles that may arise. Yet, I’m finding that no matter what I do, it doesn’t make facing this any easier.

One minor stumbling block that sat smack dab in between the chemo treatments and the radiation treatments has been a surgical procedure to remove the port that was placed inside my chest. The port was intended to assist in the administration of the chemo drugs because it had been predetermined that my veins could not handle what they were suppose to do. The port only functioned through the first chemo treatment and then flipped over somehow, rendering it useless. Lo and behold, a good vein was found, (why it was not found previous to having the port put in, I don’t know) and I was able to continue treatment. The process of having to have the port removed was lengthy, taking 2 weeks to get an appointment, having it done, and on top of it all, getting an infection. I am now almost through this process, the infection has been hard on my body as are the antibiotics needed to get rid of it. This port has literally been a thorn in my side since day one. I will be most happy to have it and all of its subsequent complications way behind me.

My family is tired now too. They are tired of seeing me tired. They are frustrated and inside I don’t know what I am fighting any longer. Am I fighting cancer? Am I fighting for time and attention of my family? Am I fighting myself?  This is where I am. In the middle, having to proceed with all that I have left to work with. Once I begin the radiation treatments, I won’t have anymore choices to make. I won’t have anymore time to prepare or get my family prepared. It’s a long, grueling commitment that can not be interrupted come hell or high water. And in my case, hell and high water are always close by. Regardless, this is my time to be selfish and completely focused on getting through it and getting well.

Maybe, here, now, I’m trying to give myself permission for the time I need to fight cancer. Maybe, here, now, I”m putting my foot down with my family, letting them know that I need them behind me. Maybe, here, now, I’m trying to stop fighting so hard for the things I need and deserve, much of which is not to have to fight so damn hard.

April 12, 2010

Coventry CT

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Comments
  1. dani says:

    all i can say is i love you. all i can do is love you. and i do. love you. *an endless supply of soft hugs full of love* ♥♥♥

  2. Deirdre says:

    J, your expressions are so raw and honest. There is such strength in this ability you have! I think women especially think of the “burden” their illness places on their loved ones. You and your family being able to be open about the stress and other emotions will enable you to continue on … truly *hug*

    • My dear, oldest (long time, not age 😉 ) friend in the world. From dancing in the street to sharing information about breast cancer….we were so free back then when we made up our dance routines. We played and used our imaginations every day to pass the time. Riding our bikes, walking up to the flea market on the railroad tracks, with a dollar in our pocket to buy a treasure. Remember, I bought those old Nancy Drew books there. I still have them and I cherish them. I cherish our continued friendship that began 40 years ago. You will always be my neighbor and my dear friend. Thank you. ❤

  3. Heart says:

    Joanne, I cannot say one more word than what all the other well wishers have already spoken here, except for to THANK YOU for opening up the comments and responding to them.. I will pray for your well being every day..

  4. marshaeps says:

    So moved by your post. So touched by the beautiful comments shared by those who stand by and for you. That wall will come tumbling down, sis. No doubt. It will. I am so inspired by your honesty and clarity in describing how you feel and glad that expressing these feelings is already lifting your spirits. It’s your time to put yourself first. As I always tell my nannies, “caregivers need to care for themselves.”

    Love you and with you in heart, spirit and soul.

    M

  5. marshaeps says:

    I know you will smash that brick wall and I know that you will prevail. Like many others here I love and reiterate everything that J said. It is hard to temporarily relinquish our roles as mother earth but your family knows it is your time to focus on fighting cancer. As J suggests there will be some turmoil as roles in your system change- that is to be expected. It is your turn to focus on yourself.

    Your honest post touched me deeply and again, I wished I lived closer so I could be of some help to my much adored twitter “sis.” I love you so much and will enjoy seeing that brick wall tumble.

    • I love you sis!! Please know that I take all of this support very seriously, I read the words over and over and gain strength and confidence. This post has been tremendously helpful to me during a time when I felt unsure that I was going to be able to continue. My value is high and I now know that. My health is important, I now know that too. I thank you and love you for all that your are, especially for being a wise friend. Know, that I will always be here for you. xoxo

  6. Janblack47 says:

    Dear Joanne, you are going to beat this, you have already done so well and come so far, hang in there, be as selfish as you need to be, it is essential for your well being.
    I wish you all the strength you need, and your family all the strength they need to support you, let them. Its time for you! Loads of love ❤

    • Believe it or not Jan, I needed all of this encouragement. I was getting scared that I was going to keep making excuses to not finish treatment. Every day, something seems to come up with a family member that needs my attention. Writing this piece allowed me to see what I was fighting. I was fighting the wrong thing. I was sitting back quietly waiting for family life to slow down. It never does. They are busy and when they are not busy, the need my attention. Despite all of this, I’m taking care of myself and they will manage just fine with whatever I have left to give them. Thanks for you unending support since I found out I had cancer. Thanks for being a dear, dear friend. I love you!

  7. Becci says:

    I will be more than happy to help give your family a break. Inbox me on FB and let me know when your radiation treatments are and I will be happy to take you to them. I can easily rearrange my schedule to accommodate this. Love you, Becci

    • Becky, it means the world that you are offering to help. Truly. I found out today that the American Cancer Society has transportation available, and for me, right now, this is the best option. I’m considering the 6 weeks of radiation as a new job. It will help me to be independent and get through it with minimal needs. If there is a day I’m stuck for a ride, I will let you know. It will be nice to see you again and chat and catch up. Love to you and the family. xo

  8. Beth Arnold says:

    Dear Joanne,

    Wow, did Judy hit the nail on the head. I know how hard it is for me to let other people help me. To ask for help, even when I desperately need it. I always feel I must be strong and carry the load by myself. But in the deeper parts of me, there is a richer knowledge that along with the giving that I like to do there is the grace of receiving. I find receiving to be one of the most difficult things I do. For me, this is a BIG lesson that I’m still trying to learn.

    Number one is for you to take care of you now…whatever that means.

    We got your back, baby.

    Much love,
    Beth

    • It helps so much that you understand Beth. I appreciate your wisdom and your truth that you are still learning too. You and I can help each other learn how to ask for help when we need it. From Paris to Connecticut for now….and at some point in the future we can share a cup of coffee at a lovely little outside table at your fav place. xoxo

  9. Mike says:

    You are such a loving, strong and resilient woman, Joanne. You’re an inspiration to us all. You take the time you need, when you need it. No questions, no second-thoughts, no regrets…you just do what you need to do get to the place you want to be.

    Here’s to the day when your only struggle is picking what shade of red you’re going to get that convertible in.

    We’re always with you.

  10. Pamela Carlson says:

    I can tell you that my experience with radiation wasn’t anything like what I expected. The process itself was very odd, but not as debilitating as I worried it might be. (Of course, I didn’t have chemo beforehand.) I worked in the morning, had lunch, then went to my radiation treatment. The effects on the skin are no fun, especially for a couple of weeks after treatment ends, but your treatment team can give you helpful things for the worst irritation. I’ll be happy to give you tips of things that worked for me.

    My #1 tip for dealing with transportation: I used the LotsaHelpingHands website to set up a schedule of when I needed rides, then emailed it out to friends who had asked if they could help. (I learned that letting people help you is difficult, but it’s such a relief to them. Plus, it’s lovely to know that people will step up for you.) All my treatment dates were spoken for within 3 days. I’m tearing up a little to remember it. Having different friends & family to talk with every day on the way to & from treatment was inexpressibly helpful. We talked about all sorts of normal things, & it kept me from unhealthily obsessing about the treatment.

    Please know you can ask me any question, & if I have the answer, it’s yours. xo

    • Hi Pam, I so appreciate your valued advice. I’m hoping to get through the radiation and be as productive as I was during chemo. Overall, during the four treatments I had many good days in between to return to my routine as a mom and homemaker. Even on the worst days, I was able to do little things like making tea, etc.. I’ll be calling tomorrow for my consultation and before you know it, I’ll be done. I guarantee I will have questions for you. xo

  11. juliemangano says:

    J speaks for me, too — I couldn’t say it any better. Know that you are loved and have the support of many, including me. Take the time you need to get better.

  12. James N says:

    When the going gets tough,
    The tough get going.
    Atleast that’s what most people say.
    But when the tough seems so hard
    And the going isn’t enough,
    What then would those same people say.
    I can’t speak for them,
    For I know only myself,
    But here is what I know.
    When the going gets tough,
    Look behind and all around.
    For there you will see
    The loved ones close
    Going with you
    When you need them the most.
    Because no matter what,
    We’re here by your side.
    With our love and support,
    Our tough is enough

  13. Mary says:

    It is not selfish to focus on yourself right now. And I urge you to do just that. Do that and please fight like hell!

    You have many friends who will have your back and support you. Please consider me one of them and call on me if you have need.

    • Thanks so much Mary, it’s tough but once momentum is regained and the process is started again, time moves quickly. I can’t tell you how much I value your friendship and the beautiful music you share. xox

  14. Somnath says:

    Joanne,

    It is hard not to feel empathetic after sharing your emotions via this post. To understand and share the anxieties you’ve mentioned, and to seek answer to the questions you’ve asked.

    Fighting cancer is the bravest endeavour and one must be ready to undergo years of painful treatment and slow recovery. All against an invisible enemy which is always planning new surprises.

    While it must be terribly difficult to sustain one’s spirits through this arduous journey, it probably gets a tad easier with the support of your friends and families. Easier said than done – I know! But, it is one of the tried and tested methods.

    You wrote about not knowing what you’re fighting anymore. In one of my favorite books, The Art of War, it says, “To win, you must know the enemy and know yourself”. and concludes by saying, “He will win whose army is animated by the same spirit throughout all its ranks.”

    Love from our friends and families often trumps our darkest hours. It nourishes our spirit and soul and reinforces our hopes and courage within. With love, nothing is impossible.

    With my sincere best wishes and good luck for your treatment ahead.

  15. Becky says:

    What j said Joanne. She’s usually always right and more eloquent than most.
    You know how much you’ve meant to me these last few months — I’m here to cheer you on and distract you with my mess as needed. 😉
    Love,
    Me

  16. Joanne,

    As I sit here speechless, tears in my eyes, wanting to come along side you and walk this road with you, or do something to aid you in your fight. I am *inspired*… totally not the right word… by your perspective, your preparation, and your dogged determination to walk this road. On the one hand, I want to be the crazy spectator in the stands, cheering you on; on the other a teammate that walks with you, hurts with you, rejoices with you…

    Your family is blessed to have you, and you them. I hope they see it as a privilege to be there for you, to give you strength to fight and win.

    TPM

    • Hello, I sincerely appreciate your support and your kind words. It’s difficult for me to share the unpleasant side of dealing with this disease. Not there is a pleasant side, but I have not allowed myself to share, very often, the doubt and fear I feel at times. I can assure you, I will continue and have a very good prognosis on the other side of this journey. Smashing through the brick wall trying to hold me back right now, is the very next thing on my to do list. The power and strength contained in the words of my friends acting as a sledge hammer. I will once again be forging ahead, brick walls be dammed. Thank you!!

  17. j says:

    Oh my, Joanne. How this post touched me. I think you are in a struggle with yourself, because you are so used to being there for your family and they are so used to counting on you. And no one is trying to be selfish but this is such a big adjustment for everyone. Especially for you, because you love them and want to be there for them. I think it’s scary to imagine that you’ll be too exhausted, too sick to be their rock. You’ll need them to be yours.

    I think they will be. And it’ll be bumpy and messy and people will misstep and wrestle with their own sense of loss, because we do that, all of us. We see from our own perspective, through our own needs. And because love is such a glorious fucking mess. But you’re right about one thing. This is the time that you have to focus on fighting cancer. THAT is the enemy, no matter how muddled it all seems sometimes.

    And feel the love. It’s all around you. I promise. xoxo

    • Once again, you shed such an honest light on the situation. It is messy and bumpy and will continue to be until I’m fully returned into my previous role in life. Love is complicated enough when everyone is healthy, add the sense of loss to it and it becomes a roller coaster. Thank you for reminding me exactly what the enemy is j. It has gotten muddled. Reaching out tonight, with this post, with some honesty on my part has done more for my spirit than anything in recent memory. I feel the love like never before. xoxo

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