I have had thoughts running through my mind today about how to post a blog on perseverance and I haven’t really been able to come up with much other than this is something you need to find within yourself when you are fighting breast cancer – or any type of cancer. And so do the people around you. This is a very long, all-consuming battle, and it takes perseverance to get through every treatment, every surgery, every side effect, every appointment, and every single day. It seems “easy” at first, but as the days turn into weeks, and the weeks turn into months, it is very easy to become discouraged, disheartened, and very very tired; not only from your physical battle but from your emotional battle. It is hard to see life going on, pretty normally, for everyone around you as your feelings, thoughts, fears, and emotions are spinning out of control. You just have to lean on your faith, keep your balance somehow, and keep right on going.

I know several women, too many women, who are battling breast cancer right now. One was just diagnosed last week, some are in chemo, two are in radiation, three are in reconstruction, and several are where I am (without the sprained neck and frozen shoulder) – we are in early recovery. All of these stages take perseverance. All of them.

It took perseverance to be a single parent trying to raise great kids, it takes daily perseverance to try to keep the calm, in a blended family, under un-imaginable stress, it took perseverance to fight breast cancer and it is taking almost every ounce of my patience and strength to continue to deal with the remnants of my last surgery. Not only adjusting to the physical scars, but medical menopause, a sprained neck, and this dern frozen shoulder. But yet, I persevere. I have to look back and see all that I have gone through and say “phew, glad I am not there anymore” and keep right on going.

I know we all have things we are “getting through” “battling” “dealing with” and “fighting”….everyone has a story to tell and good days and bad days, good memories and bad memories, friends and foes.

The other type of cancer that is touching my life right now is the ultimate in loss. My children’s grandfather is dying, as I type this pretty blog,  from liver cancer. He was only diagnosed a week or so ago and thankfully hasn’t suffered for a long time, and for this I am grateful. (This is my ex-husband’s dad, not mine – my father died a few years ago from cancer)….anyway, I as type this blog about perseverance, my daughter Morgan and her hubby Mike are flying to Michigan to go and say their goodbyes to their beloved grandpa. The clock is ticking and the race is on and for this,  I am terribly sad. Sad for my kids, for my ex-husband Tim and his wife Lisa, for all of their family members, that were my family members years ago…and for Tim’s Mom. This is the ultimate test of perseverance. Taking turns at a bed-side, listening to the uneven breathing pattern of someone dying of cancer, watching someone you love, with all of your heart, slip away. They are taking turns sitting by their Dad, eating, napping, waiting, and giving out updates as the hours pass. I remember it well from doing this with my Mom 16 years ago.  I hope Morgan and Mike make it in time tonight to say what they need to say to their grandpa and I am sad that Kyle won’t make it there until the funeral. I hate this for my children. Three out of their four grandparents have died from cancer. I imagine they are beginning to hate cancer as much as I do.

No matter what stage of cancer you are facing, whether it is you, or someone you love dearly, it takes perseverance to fight the fight, to celebrate the milestones and victories, and sometimes, to say your goodbyes and let go.

Let me tell you about my personal experience, so far, with the BKH (Buddy Kemp House). This is where I went for my Look Good Feel Better class wayyyy back in May. I loved the big old welcoming brick house with fireplaces, a large sun room, and a beautiful back patio. I didn’t really look into their services back then because I thought it was for “those other cancer patients”, you know, the ones who need assistance, therapy, classes, support groups. Not me. I was doing “fine”. I was getting through my cancer experience and I was “strong”. I just didn’t think I needed what they had to offer because I was “ok”. I would have loved to have attended their support group but if I was well enough to be doing much back then, I needed to be working. Otherwise I sat in doctor appointments or was sick in bed.

Along came the week before my bilateral in September and I realized I wasn’t so “strong, good or ok”.  I remember emailing my breast navigator and my surgeon’s nurse and telling them I just wasn’t sure about the surgery. I didn’t know if I was ready. My calendar said I was ready. I needed to get through it and I needed to get on with life. But I was in a very weak place mentally, and emotionally, and just didn’t know if I was truly ready for the surgery. Not the surgery itself, but the aftermath. I immediately got a phone call from my breast navigator ( I need to dedicate a whole blog to that profession) and we talked for quite a while. She suggested I call the Buddy Kemp House and see if I could get an appointment with a counselor. I called there and they were booked for the week, “it’s ok” I told the lady on the phone “I will be alright”. She asked if I was ok and I told her I was having a bilateral the following Monday and I was just unsure, scared, and very sad. I started to cry on the phone with her. She said “just a moment” and I heard some papers moving around. Then she said “can you be here tomorrow at lunchtime?” I said “yes” and that was the true beginning of my experience with the Buddy Kemp House. I have seen a therapist there now twice a month since my surgery and I love her. She is really getting to know me and I am trying to take her advice and direction on how to move past the physical destruction I see in the mirror each morning.

They have Extreme Doodling classes – a way to express yourself creatively and kind of turn off your mind, they are having a class on “sexuality after cancer” next week, they have all kinds of help and  resources, and the people there are kind and loving. I wish I had gone there when I was diagnosed and allowed them help me with chemotherapy and my early onset of my cancer diagnosis.

I thought I was fine. I thought I was strong. I thought I was ok. I am just now finding out that I busied myself through every second I wasn’t sick and I am just now going through the grieving process of what cancer has brought to my life. Not only the diagnosis, but the aftermath of my bilateral mastectomy. This is a long and emotional process because the changes that have occurred are life long – however long my life may be. I am just now learning that I really should have dealt with some of this early on and maybe my recovery would be further along than it is. Or maybe this is exactly as it should have unfolded and my mind has dealt with all of this in the little bits and pieces my brain has allowed my soul and spirit to accept.

If I can give more breast cancer advice, and you all know how I love to offer advice – one thing I would say is take advantage of the resources that are out there early on. Not when you feel like your mind is ready to collapse and you are not sure whether the path you are on is really the right one for you. That is what happened to me back in September. Luckily as my story unfolded I became more and more aware that my decisions were the right ones, for me, and I am still in the recovery period. I think they consider you in recovery for one year after your last treatment. Now whether that is a surgical treatment or a chemotherapy treatment, I am not sure. But I do know that I am beginning to really understand what everyone was calling “the new normal”…for me it’s life after cancer, life after chemotherapy, life after a bilateral mastectomy, and also life thrown into medical menopause.

The new normal is definitely new – but I can still be thankful that my bone pain is gone for the most part (depending on the weather) and that I am still cancer free – and my hair is coming back thicker than ever. The rest of my new normal will unfold as God directs and as my mind, spirit, and soul are able to digest this a little bit each day.

So, if you are a cancer patient, or a caregiver, or a loved one of someone newly diagnosed, check out the Buddy Kemp House and see what they have to offer. Please don’t be like me and think these places are for “those other cancer patients”. Because whether you believe it or not, if you have been diagnosed with cancer, you can use all of the support you can get.

This is the Valentine note I received today from my LeighLeigh….she truly is one of the most thoughtful and caring people who I have been blessed to have in my life. Check this out.

Hiya!

I know this day has mixed emotions for you from many standpoints. Just know, that I am still here….maybe more of a silent partner for now, but still with you none the-less. Finding a lump this day last year was the beginning of a changed world for you and many of those around you. I still can’t grasp how all this happened and took place over the course of 2011, but, I do know that I am a changed person and hopefully a better person for it. You are a one of a kind friend Laura. You definitely have a place carved into my heart and the hearts of my children. How fitting for a day of Valentine, a day that belongs to love. As RyLee puts it, “this is a day that is all about LOVE”. Maybe you weren’t feeling too much love last year this day. Maybe a lot of sadness and anger.  But this day…..this year….the love of your kids, your husband, and a LOT of your crazy friends will show through all that pain from last year. Not really sure where I was going with all this but did want you to know I was thinking of you on this day. A day that will always be burned into my memory just like March 1. Just remember…..

THIS DETOUR IS NOW YOUR ROAD. I stole that from something I heard on the radio this morning….but how it fits you perfectly. It may not have been the road you would have picked, but what you do on your detour is going to make a difference in many lives to come.

 xoxoxoxo

Leighleigh

The kindness of that man was so sweet and so simple, yet so powerful, I had to blog it and let you all know how this affected me.  That kind smile and one word of “congratulations” made my day. It was just one word from a kind stranger and the emotions it brought so quickly to the surface surprised me. It’s not often that my mind is not thinking about breast cancer now that so many of my friends have had it or are currently fighting it, but today caught me off guard and I thought – what a cool thing that was for that man to do – and it cost him absolutely nothing. Or did it ? Did he know that his kind words would make my day because he has already paid the ultimate price to breast cancer? Kevin and I talked about that on the way to the car. Did he lose his wife to breast cancer, is his sister currently fighting it, has he lost a daughter to it, or maybe a son? Shoot, in actuality, he could be the one who battled breast cancer and survived. I am not sure how that man has been affected by this disease, but from the look on his face, and the softness in his eyes and spirit, he has been touched by breast cancer in some way. But then again, haven’t we all?

If you see someone wearing a survivor tee-shirt, of any type of cancer, please give them a “congrats” or a “way to go”. You never know how much a couple of words can lift the spirit of a total stranger.  These words, and your smile, are completely free.

We have all been talking about positive thinking and maybe mental energy and good thoughts will help us win. I keep thinking of the people I could help, right after winning, the first day. I could finally pay back some of what I have received over this past year. Writing checks to some of the services and organizations would be the best feeling ever. First  – Forest Hill and our very respected, and adored, David Chadwick…how cool would it be to hand him a $100,ooo check – or more? Obviously Making Strides and the American Cancer Society. The Buddy Kemp House. Carolina Breast Friends. Project Art Aid. Cindy’s Hope Chest. Relay for Life.  Just to name a few…

I think it would be so awesome to support these organizations so they can continue to support other women (and men) fighting breast cancer. I had NO idea how much these organizations did for people until I started using them myself. This is one reason why I will continue to build my tab at the top of my blog for resources and services. First of all, to help other breast cancer patients, but secondly, maybe, just maybe, someone out there will read about some of these fabulous organizations and make a donation. Maybe in memory of someone you have loved and lost to breast cancer, or in honor of someone you know battling breast cancer right now, or maybe to help support one of them that does research to help find a cure.

If you are a new blog reader you don’t know this, but my co-workers and I began walking on a breast cancer team five years ago with Making Strides and the American Cancer Society. Since then we made our own team and we have handed out almost 500 Primax Pink Warrior tee shirts and we have raised over $70,000. It started with a small calling to do SOMETHING…anything. It started five years ago in honor of my Mom’s memory. This is probably how Cindy’s Hope Chest started…a draw to do SOMETHING. Carolina Breast Friends also….the pulling on someone’s heart to do SOMETHING.

So, with all of these positive thoughts in mind, please go out and help a breast cancer patient, cook a meal, make a donation, visit with someone going through chemo, send a card, make a call, write a letter, say a prayer….if you don’t know of any breast cancer patients right now, please contact me, I know several who could use some encouragement or prayers today.

Back to the lottery – most people would love to win the lottery to go on trips (of course I would take a trip), buy a fancy car (I like my car), a bigger house (our house is big enough), or a bunch of crap that no one really needs. (I do think I would have my physical therapist Peggy come and live with me and work on my frozen shoulder daily until it releases. Maybe I could have her work on my shoulder on a tropical island for a week or two, while sunning myself, and drinking a frozen fruity drink!)  Seriously, my thoughts automatically go to donating to an organization to help people with breast cancer, to help find a cure, lend a helping hand locally, SOMETHING. Who needs more stuff when you can invest in an organization that you may need someday yourself? Remember, that’s how it worked with me. I raised money for the American Cancer Society and five years later I was using their services. I pray daily that someone’s donation helps fund the clinical trial, the test, or the research that finds a cure, or stops, this dreaded disease.

I wonder what you would do if you won the lottery?

While Kyle was here and in such pain he really just wanted to be left alone or he was sleeping. Our time wasn’t spent “together”. He would let me know when he needed pudding, pain meds, cold water, soft foods, Gatorade, or some light scratching on his arms. We have a small stuffed monkey that has a cape and rubber band arms and when you shoot it across the room it screams like a jungle monkey. That was Kyle’s way of calling me since he couldn’t speak very well. Or he would text me. I would run up the stairs and run back down the stairs to get whatever he needed. I kept thinking how recent it was that I could barely get up and down those stairs due to chemo/Neulasta shot side effects, and this week I was very thankful and grateful to be able to function as a normal Mom. In fact, I loved taking care of him again. It was a “simple” week, stressful but simple,  just lots of pain meds and soft foods – but I felt needed and useful. I haven’t been able to do that in a long time for either of my two kids. They are grown and self-sufficient. Something I am very proud of – yet it has left me with a “Mom hole” in my spirit. I am proud that my kids have grown up to be responsible and reliable young adults – but they just don’t need me anymore, and that’s hard. This past week was a bit on the crazy side trying to juggle working from home, running to the office, and trying to keep going 100 mph up and down the stairs because I am not all the way back to my normal self. But, the week is gone, Kyle is back home, and I have to believe he will continue taking his meds on schedule, continue to take it easy, and call me if he sees one spot of blood coming out of that throat. He promised. (He had to have his throat cauterized Thursday due to some bleeding).

I wonder why it’s hard for some Moms to “give up” their kids – even when they are grown – and then there are other Moms who tear their sick children out of their beds at 6:45 am and dump them on our doorstep four hours earlier than she said she would – all to save about 50 cents in gas. If your kids are sick don’t you go out of your way to keep them in their beds as long as possible and then wake them only when you have to ? In fact, when my kids are sick – the only place I want them is with me. After Kyle’s surgery Tim and Lisa had him for the first two nights and all I could do was text Lisa every ten seconds to make sure Kyle was ok. She told me I had mommyitis and we thought it was funny. I was a wreck. I was also a wreck when Kyle was here and I had to go into the office. To me, this is just part of being a Mom. I guess it becomes part of you when you have a baby. I felt awful when Kyle’s Dad took Kyle away from me this morning. I wanted my week back. Certainly not because he was sick, but because he was with me. I got kind of got teary eyed in the parking lot this morning when I kissed Kyle goodbye. I thought this desire came with the territory of having kids - but in the new life I am living -  I now know this isn’t true. Sadly.

Thank you for your prayers, your positive thoughts, and support. I am so very very thankful…thank you God !

I started writing one out this morning and asked Kev “if you had 5 trips to take with me, where would they be”? He mentioned the Grand Canyon and for the entire day today he has been doing chores, running in and out, AND painting the garage. I am not sure if talking about my bucket list inspires him, or scares him, but man does it get him moving.

I think we all should have bucket lists (I think some people now call them Leap Lists). Aren’t dreams just unrealized goals ? And don’t “they” say if you write it down you are more likely to do it than if you don’t write it down ? One of my main bucket goal list items is to make a website for breast cancer fighters. A closed website for friends or friends of friends to find support, information, resources, and some friendship. I have spoken with several of my breast cancer survivor friends and they are willing to be the beginning base of this group. We add in a woman here and there, and then we all walk her through her process…not too hard or too time consuming when ten people help three people through. Then you add the three fighters to the base and you have thirteen people to help the next five through…and so on. It will be completely secure and no one can see what is going on in that website unless you are ”allowed” to be in there. That allows some privacy, some freedom, and some control for our supporters and our fighters….I have an offer from someone to help me set up the website…so let’s see how far we can get and which bucket list this item lands on.

I have another woman who I spoke with today that I met back in September who had a bi-lat last week. She found me on facebook last week and she needs someone to talk to – to get information from – and to lean on. I see this website as a perfect opportunity for this type of situation. I even have ideas for names and layouts and details. Certain things linking a new member to people in the group that share a diagnosis, or a doctor, or a type of chemo ritual. I do know I cannot save the world, that is why I am asking my friends to help me by helping other women.

So as I sit here today taking care of Kyle, trying to rest, stretch my neck and get my frozen shoulder ready for PT, my brain is always going 100 mph. Now it mainly wants to focus on helping other women – maybe finding the women who aren’t as blessed as I am to have such a strong support group. If each woman in this website answers a few emails and takes a few minutes out of her week to support someone in a similar breast cancer situation, then they are just giving back a little dose of the love they received while going through the battle themselves….I think it’s a GREAT IDEA !

Now my mind must ponder trips to write down, a few financial goals – like getting a will in place, and maybe even think out what room in the house needs to be painted next….after the garage obviously !!

To provide effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.

The Process is Simple. Patient Advocate Foundation’s Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.

Click on the link on the right side of my blog and see what services are available.  This info is also posted under my resources tab at the top of my blog.