5 basics that are critical to surviving a breast cancer diagnosis

After a year fighting breast cancer... I've learned quite a bit

I've been spending most of this past weekend thinking about ways to change the blog to make its impact larger on the world. I learned a lot at the Blogworld conference and I am really trying to apply what I learned and just grow. Today, I focused on reviewing all the old posts from the blog...and I have been tearing up and crying for hours.

My goodness....this has been a bumpy ride.

Reading through all the old posts and comments was an amazing insight into the journey with breast cancer. I have learned a lot. And will post a lot of the information that I've learned on this blog in the coming days and weeks.

5 basic things you (or your loved one) will need to get through your breast cancer diagnosis:

Let's start with 5 basic things that you (or your loved one) will definitely need to get through a breast cancer diagnosis.

1. A support system -- I know that the world believes that women wear superhero capes under their clothes, but the truth is that a support system will be critical in the course of your treatment.  Put your pride aside and pull together a list of people that you can trust and count on. Consider this a starter list because...as time and treatment goes on, you will find that people you thought you could count on will be unable to help and people you did not expect to be in your corner might become your strongest supporters. Your list of supporters will change and grow as time goes on. So be flexible about who gives you support and accept offers of support (even if it comes from people you didn't expect).
2. A notebook or journal -- Getting a diagnosis of breast cancer is almost like getting a crash course in oncology medicine. You're going to be hit with a lot of information and, depending on how you process things under stress, you may not remember it all. Take your notebook/journal with you to every appointment and jot down notes during your appointment. Use your notebook to jot down questions that come to mind between appointments. Also, your notebook will be critical in assisting you when you deal with your insurance company.
3. An appointment partner -- you can have one steady partner (like a spouse, significant other, best friend) or you can rotate between a really close group of friends. Whichever works best for you. But try not to go to your appointments alone. A second (or third) set of ears and eyes during your appointments is necessary. You're going to miss some information. The sooner you accept that, the better. Bring someone with you that you trust so that you can compare notes. [If you absolutely, positively cannot bring another adult person with you, bring a recording device or use your smart phone to record your appointment with your oncologist. Give them warning first that you're taking notes so that you don't forget anything.]
4. A calendar -- appointments are going to be happening quick and fast. You need to carry a calendar with you to your appointments so that you can schedule appointments with relative ease. Keep your calendar handy and close. 
5. Permission to grieve -- I think this is the most important part of preparing for your breast cancer journey. Look, I have to be honest. This thing is HARD. It changes the way you look at yourself, the way you look at life, the way that people look at you. Your whole world will be different. Not necessarily horrible but definitely different. You may want to cry. You may want to shout. You might want to scream. Do all of that. Do more than that. Give yourself permission to grieve and cry... don't try to be stoic all the time. You're going to have to learn how to give yourself permission to be weak...because that is where your strength will come from.

These things may not seem necessary but when I reflect over my journey...these are the critical things that helped me get started on my journey.

not only do I have breast cancer...but I might die BROKE too?

I am watching our First Lady on C-Span acknowledging breast cancer awareness month and speaking out about health care. She is amazing. But watching her and the other survivors who have spoken is scaring me and making me wonder why did I, why do I fight so hard for my life? Even if I survive breast cancer – which I am doing right now – I could lose everything financially trying to stay alive.

Right now, I have health insurance…wonderful health insurance that covers so much and has allowed me to receive really fabulous treatment for my cancer. But…what if I leave this job, or lose this job? My options for healthcare insurance are pretty low. Breast cancer is a pre-existing condition that, right now, many insurance companies will not cover.

Fear of recurrence is real. I will be dealing with breast cancer in some way, for the rest of my life. If I were to lose my health insurance, how would I manage my treatments? Right now, each time I sit down for chemotherapy…it costs my insurance company over $5,000. That is a discounted rate from what the hospital charges for chemotherapy. One of the patients at my cancer center pays out of pocket and it costs him $16,000 for each cycle of chemotherapy. I have no idea how much radiation costs per dosage – but considering that I was in radiation therapy for two months, I’m sure it was at least $20,000 if not more. Don’t forget all of the surgeries and incidental trips to the hospital…it adds up.

I know that after a year of treatment and surgeries…the cost is astronomical. And like I said, I have good health insurance. What happens if I lose it? What happens if I want to move my career in a different direction? Where do I turn? I don’t own anything now, so it’s not like I could sell my investment properties and use that money to keep my life going.

I feel like I’ve been hit in the head with a ton of bricks. Just a couple of days ago, I was chatting with a young man I met in Las Vegas at a blogging conference. We were discussing fundraising ideas for breast cancer survivors and patients utilizing his blog and my blog and our collective influence in our cities. We discussed trying to raise half a million dollars to aid in the fight against breast cancer. I thought it was a ridiculously high number but a worthy goal and I thought – at the time – that we could do a lot of good with that much money. But right now, I’m realizing that $500,000 is NOTHING…when it comes to the astronomical costs of treating breast cancer. It’s the equivalent of dropping a brick into the ocean.

ONE woman could use that much money to fight this disease, maybe two, depending on the stage of their cancer when found.

What the hell is really going on?

Am I fighting for my life…trying to maintain my cheery disposition, my sexy swagger, only to end up destitute and still succumbing to cancer in the end? Am I fighting for my life really or just delaying the inevitable? Is the only way out of this death?

A funeral would cost my family significantly less money than my remaining treatments. I’m not trying to be funny and I’m not suggesting suicide. Not at all. Passing health care reform HAS to become a reality. To do otherwise is to effectively doom the 2 million women living with breast cancer right now – and the 250,000 who will be diagnosed every year following -- to a life of poverty, bankruptcy, fear and ultimately a horrible end to an otherwise beautiful life.

Can we afford to lose 2 million women – mothers, daughters, sisters, cousins, aunts, grandmothers, wives, friends, neighbors, colleagues, teachers, lawyers, police officers, factory workers, secretaries, postal carriers, doctors – because they were born women and maybe had a genetic disposition for a disease we can’t cure?

Being a woman is a risk factor for breast cancer.


Think about that for a second.

The fact that you were born (you had nothing to do with that), and you were born female (you had nothing to do with that) …puts you at risk for getting breast cancer. And if, by some freakish roll of the dice, you are one of the 1 in 8 women who gets breast cancer – your whole life becomes enslaved to a system of treatments that you need to survive but may not be able to afford.

Where is the fairness in that? Why do I have a bullet on my back because I’m a woman with breast cancer? Why … just why? Where is the exit for this ride? I want to get off. I did not sign up for this.

All I wanted to do was to live a quiet life, find a good man and get married…have a few kids and maybe write a few books. Laugh a little, drink a little, travel a bit – that’s what being a grown-up meant to me. Now, I don’t know that any of that is possible – well, the books will still be written – but the rest seems to be a distant dream that I may not be able to make come true.

Breast cancer ruins relationships. It ruins your emotional state. It ruins your body. It changes your abilities. Life is just a smidge more difficult when you’re constantly worrying that your life threatening illness might come back and finish what it started. And now, on top of all that…breast cancer has the nerve, the absolute audacity to ruin your financial goals too.


Gimme a d*mn break!

Jumping on my political high-horse: Contact your congressional representative and tell them that we need health care reform not now, but RIGHT NOW.

Think of those 2 million women who simply were born…and ended up struggling with a disease we can’t cure yet.


Right now.  We need a cure and we need health care reform.
http://blogs.abcnews.com/politicalpunch/2009/10/michelle-obama-pushes-health-care-reform.html#

Worried Again About Breast Reconstruction Surgery

Update 7/2015:  When I wrote this post in 2009, I had already been in treatment for just under a year. I was a nervous wreck. Afraid for my health. Worried about my emotional stability. Lonely. Scared. Worried about my job and possibly losing my benefits. Just so much was weighing on my shoulders. I was afraid of making the wrong decisions. I was a mess. I knew that I wanted a new breast, I felt that it would make me feel whole again. But I was not excited about losing my second breast if I didn't have to. And I really didn't want to have more surgery than absolutely necessary. 

I can't shake the feeling that I may not make the right choice

I think that I’d gotten into a false sense of security about my health. I mean, I know that I am still in treatment for breast cancer (some of my friends cannot deal with me saying that I have breast cancer still…). I understand that I’m not at full health. But I think that I sort of forgot a little bit…or became removed a bit from what this whole health crisis was about.

A couple of things have happened that have reminded me that I am still a bit frail. Definitely not as frail as I have at various moments during this past year, but certainly frail enough that I still need to treat myself with care and pay attention. The first problem is that I have an infected big toe. Sounds gross to say but it is true.

I was told that while I was in treatment, I should not have a pedicure. I understood why that was – to prevent any unnecessary infections – but I also felt that I was beyond the time where it would be a problem. I had a pedicure – from a salon that I’ve gone to for many years – before I went to Houston for Labor Day. After I returned from that trip, my toe began to bother me. I freaked out at first but then, calmed down and figured I was being dramatic. Well, a month and a half later…I finally dragged myself over to my primary care doctor’s office and found out that I should have adhered to my oncologist’s advice – no pedicures. Period. My toe hurts – still – and I have to see a podiatrist in order to have the infected part cut off. Just gross.

And easily avoided if I had not been so vain and had taken my situation more seriously. I just had to have cute toes before I went on my mini-vacation. (sigh) Now, my toes look worse than ever and probably will for some time.

Some of the admonishments that you are given as a cancer patient really just seem like overkill… like getting a pedicure. I mean, really? I’ve been getting my toes painted and whatnot for 20 years and have NEVER, ever had a problem. Get a little cancer and bam! More doctors, more problems…

It’s very frustrating.

Representation of the TRAM Flap reconstruction surgery that I had. 

My second issue is more serious. I am back to an emotional place of fear about my breasts. I don’t know if that fear will ever fully go away, now that breast cancer has entered my life. But in this situation, the fear is about losing my breast – again, which also brings up concerns about losing my life – again. I’m scheduled for reconstruction in a few weeks. I’m still debating cancelling that surgery. Though I don’t really know why.

I received a voicemail the other day from the plastic surgeon who will perform the procedure and her message left me weak and scared. What scared me was that she wanted me to get the genetic testing before my surgery date so that I could know whether or not I carried the breast cancer gene. Since I have a family history, there is a possibility that I carry the gene. If I have the gene, it is her recommendation that while I am in the operating room having one breast created, that I allow the other breast to be removed and instead have two breasts created.

Sigh.

I cannot have the procedure I’m having for reconstruction twice. It is a one-shot deal. So if it happens that cancer returns in my remaining breast, and I have to go through all of this all over again… I can’t use my own tissue to reconstruct a second breast. I would have to have implants. Assuming, of course, that I even make it that far.

When I heard her message, I simply broke down into tears. The fear of losing my second breast is HUGE. I have just gotten to a place where I can sort of deal with having just one breast and now – with one message – I’ve been pushed back 10 months in emotional growth to the scary place where I have to accept giving up a portion of my body.

I thought I was over this. I thought I had dealt with this. I thought this was behind me. And yet, here I sit, tears in my eyes and fear in my heart. I discussed it last night with my parents (well, my mother… my father sat there looking like a deer caught in headlights) and my mom could not understand why I am stuck on keeping my breast. Her logic and mine differ greatly.

The way I see it, the likelihood of cancer recurring in my breast is slim. And there is no assurance that if I lose my natural breast that cancer will not come back to me in some way. To me, cutting off a perfectly fine boobie is ridiculous. And wasteful.

My mother’s logic is…why take the risk? Even a small chance of recurrence is a chance. Breasts aren’t that important in the grand scheme of your life and if it saves you from going through all of this all over again, it is worth the loss.

Truthfully, I had not thought about going through chemotherapy and radiation again. I really had not considered all that cancer recurrence could really mean in my life. I just instinctively felt protective over my body. MY body… MY boobie. MINE. (yes, I realize I sound like a petulant child, but that is how I feel)

Like I’ve said in the past…having cancer is hard because it’s so invasive in your life. Strangers just start telling you all sorts of things about yourself that you didn’t know. And that you can’t feel. You have to trust and take them at their word that what they say they know is true. (Scary)

Cancer strips you of a lot of things; your looks, your strength…your dignity. It takes away your ability to care for yourself as an adult and sometimes it takes away your dreams for the future. Now…in fairness, these things do come back to you…but the taking away part is really difficult to get over some days.

It’s MY boobie. My very fabulous boobie. And while it’s not as pretty, not as perky, maybe even not as sexy as it was in my younger days… it is all mine. But maybe, it wasn’t meant to be mine forever… I mean, its partner tried to kill me.

I have to make a decision. And I need to make it…like right now…because time is running out. And no decision is still a decision…it’s just not the best decision.

That's all for now, 

~Nic

I Got Through Chemo Okay But I'm Still Unsure About My Reconstruction

...and tomorrow is chemo day...

I'm coming to the end of my chemo days. I am not sure how many more I have but tomorrow is one more adventure in the land of breast cancer. I am not quite as nervous or anxious as I usually am. I think that's because I've been so busy at work, and then busy when I get home that I'm sort of exhausted. Too tired to worry.

Awhile back, someone commented that breast cancer was the best thing that happened to her life. I found that thought to be...well...ridiculous. But as I contemplate the days ahead, I am starting to understand a little bit better how this journey can make you see life in a brand new way. I won't go as far as to say that having breast cancer has been the best thing ever. (laughs) But I will admit that the challenge of this illness has forced me to become strong and confident in ways that I was not sure I was capable of a year ago.

I think of my early days with this disease quite a bit now. I find myself talking to other women who have recently been diagnosed with breast cancer a lot. Since I have started this blog, I have become a magnet for other sisters struggling with finding their way through this maddening maze of breast cancer. Each time I talk to one of my new pink ribbon sisters, I relive my early days of treatment and try to explain to them how I felt, what I went through and what they can expect from their treatment in the coming days. I purposely take myself back down that emotional rabbit hole, so that I connect with them in a way that resonates with the fear and anxiety that they feel. Each time, each sister... I virtually take their hand and walk beside them for a few steps so that I can feel what they feel in order to get them to see what I see now. That where they are today is not where they are meant to stay.

I am certainly no medical expert on breast cancer. I am one victim who is struggling to be triumphant in the end, like so many others before me. I am only an expert in how I felt, what I did and how I managed to keep moving forward even when I wasn't even sure I was making progress at all.

Battling breast cancer has given me ample opportunities to examine myself, my life and to really stop and consider where I am going and what I have to contribute to this world. When you find yourself faced with your own mortality, you shift your priorities pretty quickly. (laughs) I am guessing that I only have 1 maybe 2 more rounds of herceptin chemotherapy and then I'll be back into the real world again. I am guessing that I will feel some sort of separation anxiety from leaving my safe cocoon of regular visits to the cancer center. But even though I imagine the next few weeks/months to be interesting emotionally... I know that it is truly time for me to move on and claim my new presence in this world.

As I really think about dating again, and I think about the possibilities of this life... I realize that even if my time is shorter than I had ever hoped or imagined, that's no excuse not to enjoy every moment and wring all of the possibilities out of it that I can manage with the time that I have.

I want to love again. I really do. The idea of being vulnerable, though, is scary. But, I ask myself what is the alternative and I realize that the possibility of connecting with someone good, kind and decent really doesn't have a downside.  I read another pink ribbon sister's blog the other day and her post was a mini-rant about the possibilities of dating as a breast cancer patient. Her words echoed a sentiment that I have felt myself -- who wants to date the cancer-girl? She went on to discuss her concerns about having one breast and dealing with all of these treatments and appointments and wondered -- much like I have over the past year -- what guy would willingly sign up for this side of life?

The truth is...a good guy would. The right guy will. She and I just have to have faith and believe that it is possible. Because it really is possible. Honestly, I am afraid of being in love because it makes me vulnerable to being hurt again. But the alternative is to live a life without love, without intimacy, without companionship. Eek! Don't want that. So, I'll open my heart and take a chance and hopefully the good things that I experience will outweigh any possible negatives. The truth is that without breast cancer, I would still feel the same hesitation about dating and love possibilities.

I want to be focused on something other than my health. I want to keep travelling, laughing and enjoying the joys of this world. There are so many things that I still want to do. Maybe that's why tonight my anxiety about chemotherapy is lower than usual. Instead of worrying about what may happen when I get to the cancer center in a few hours...I'm thinking about the weekend. Thinking forward to my trip to Las Vegas in a couple of weeks... Thinking about the giggles and joy I will feel on Friday when the work week is over.

After all that goodness... being anxious about having a 2 inch needle stuck in my chest for a couple of hours is low on the priority list. Its not like I haven't handled it before. (laughs)

Phantom itching

Phantom pains are real... and annoying

I’ve read about people who have lost limbs feeling phantom pains and itching in the removed limb. I always thought it was so sad. I mean, here you have this poor person who has already gone through something very traumatic and after all of that… suddenly their mind starts playing tricks on them and tells them that they feel something that they couldn’t possibly be feeling. Yes, I’ve always thought that this was a very sad thing – not overwhelmingly worrisome but maybe mildly annoying at best.

So, of course when I started feeling my own phantom pains and itches, I chalked it up to my mind playing tricks on me. My anxiety is slightly elevated right now because I’m not sleeping well. Plus the seasons are changing which has heightened my fear of the flu drastically. Basically, I ignored the itching I felt. Thinking that if I didn’t give it any energy, it would dissipate and my life would simply go on. But it is not working.

My left boobie itches something TERRIBLE. Wouldn’t be a problem if there was a boobie there but there ain’t nothing there!! So why is it itching like this? I feel crazy. Especially when I am busy working on something else and my mind is focused and then I find myself reaching to scratch a non-existent breast.

Sigh.

Utter madness. But on day 2 of Breast Cancer Awareness Month…its appropriate that I feel just a little mad, a little crazy, a bit off-kilter. This month is all about arming yourself and the people around you with the information necessary to keep pressing for a cure for breast cancer. So hopefully, a few years from now, I won’t be sitting by the bedside of one of my younger cousins after she’s lost her breast to cancer too.

For all my pink-ribbon sisters/sistas and supporters…sport your pink proudly. We’ve been given a gift. The gift of an affliction that reminds us just how precious and beautiful and wonderful this world and this life really is.



P.S. It isn’t lost on me that 1 year ago I hated everything pink. My first October as a breast cancer patient was rough. This second October is starting off much better from an emotional perspective. I’ve crossed the top of a very large mountain and the valley below looks so welcoming and wonderful. I am happy that chemotherapy doesn’t last always. Very thrilled that healing does take place. Super ecstatic that very soon I will once again have two breasts. And really amazed that God does listen to our cries, our whispers and our prayers because how else could I explain the wonderful support system that I have been blessed with?

Between you and me, I may start dating again seriously. I’m scared and excited at the same time. But I am still considering the options and trying to make sure that I am up for the challenge of being that intimate with someone again.



Time really does change things.