One step forward, two breasts back

A few weeks ago, Nic wrote about her pending TRAM flap surgery and her uncertainty about going through with it.  Well, I'm here to say that even with up-to-the-last-minute doubts, Nicole underwent the twelve hour reconstructive surgery on Wednesday and is faring very well.  When I spoke with her today she was experiencing some pain but had a great sister-friend and an awesome cousin visiting and making her laugh.  I can't begin to describe the feelings and emotions that she's experienced (just over the last five days) with the raw eloquence that she does, so I won't even try.  Anticipating her return to the blog, to describe the latest stop on her journey, will give us all something to look forward to.

I will say-as her friend, her sister, her prayer partner, her ace-thank you for all of your love, support, and prayers.  Being the modest woman that she is, she may remove this blog entry later but since I have the floor now...Nicole is such an amazing, inspirational sister with a story that many don't even know the half of.  The strength that this woman has shown (even in her weaker moments) during her journey with breast cancer has been admirable, to say the least.  I am so proud and blessed to have her friendship and I look forward to growing old together.  Interestingly, while I'll be old and saggy, Nic will be oldER and perky.  Hey, you've gotta try to find the bright spots wherever you can!

Nic, I love ya, girl! And thank you for trusting me with your baby (blog).  And for those who may think that my usage of the term 'raw eloquence' is an oxymoron, you must not have read this sistah's writing.

-Michal

the mammogram was fine!

The other day when I went in for a mammogram, a mass showed up on the film that concerned the radiologist. Of course, her concern frightened me to my core. When I saw the mass on the film, I could only think about July 2008, when I went to the first radiology center and had to have a discussion about the possibility that my lump was cancer. Over a year later, the fear is still very very real.

I am happy to say that after I dropped off the film from my previous mammogram for comparison, I received a call from my doctor who told me that the radiologist felt that the mass that showed up on the film was NOT cancer.

Thank God.

Of course, in those hours between the first conversation and the second... (in my mind) I had already started thinking about going through chemo again, surgery again and all that comes along with it. I'm glad to know that I was worrying for no reason.

I believe that I will have to have a mammogram every 6 months (or possibly every 3 months) on my remaining breast in order to stay on top of any possibility of cancer showing up in that breast. But I would rather do that than remove the breast just in case.  But this "scare" really showed me that although I feel like I've come a long way in my treatment and I have a good attitude about it... I am truly still very scared about breast cancer. And that may take a long time to get over.

Let’s talk again about why getting a pedicure is a no-no

Ms. Nic (also known as fancy-pants) decided to hop on a plane and head to Texas for fun and frolicking with my cousin and a friend for Labor Day Weekend. Wanted to see Houston for myself and just get away from the DC madness for a couple of days. In preparation for the trip, Ms. Nic/Fancy Pants decided to have a pedicure. Can’t go all the way to Texas with old toes, right? Okay…so what, the oncologist warned repeatedly that pedicures were not good for cancer patients. I figured if I went to a very good and reputable salon that I trusted, I would be okay. Hmmm….wrong, wrong…WRONG.


I went to a salon I trusted. I felt that the technician did a wonderful job but I failed to inform her that I was in treatment for cancer and that she needed to be extra careful with clipping my nails.

When I think back, I don’t really know why I didn’t say anything. I had gotten pedicures before during the summer and each time I was very adamant that the technician be extra careful with my toes. And they were. But this time, I think I was upset about something (can’t recall what exactly) and I didn’t want the pitying looks that always follow… “I am in treatment for breast cancer”. So I didn’t say anything. I just sort of watched her closely.

I can recall the snip that probably caused all the problems I would have later. I felt it when she tugged at that nail. But…I didn’t say anything. I just prayed it would be okay. It was…for about a week. And then things started to get a little janky.


Kill me now…

So…when my toe started looking a little crazy, I dismissed it. Started doing my own thing with it. Kept it clean and bandaged. Kept putting my trusty Neosporin on it…and didn’t think much else about it. I figured it would heal shortly. And when shortly stretched out into a little longer…I figured that since my immune system is still slightly compromised that maybe the healing would take a little longer but it wasn’t a big deal.

By the time I realized that the toe wasn’t healing and that maybe it was a big deal about a month had passed. I called the oncologist’s office and he seemed rather cool about it. Well, let me put it this way – he didn’t seem too stressed about it. So, I took that as it wasn’t a big deal and I went about my merry way. He suggested I go to see my primary care doctor and left it at that.

I didn’t call my doctor for another couple of weeks. I could run off a litany of excuses but the real thing is that I didn’t want another bill showing up at my house. For one little ol’ janky toe? (waving hand) Chile cheese… couldn’t be that horrible, right? It’s just a toe. Again…wrong. So very wrong.

So…about two weeks ago, I finally get in to see my primary care doctor. He was kind as always and when he looked at that toe – I could see the laughter in his eyes. That thing was ugly – not horrible but definitely in need of attention. He wrote a prescription for some antibiotics and gave me a referral to a podiatrist and sent me on my way. He told me that my infection was pretty common. Folks get infections from pedicures all the time. And he also reiterated that I am not supposed to get pedicures while I’m in treatment.


Y’all do realize that I am a hard-headed knuckle head sometimes, right?

I took the prescription but didn’t go see the podiatrist. (yeah, yeah…I know…I suck) Normally, when you take antibiotics, they kick in right away and things are all better halfway through the prescription. Not this time. That’s when it finally hit me that I was in a little bit of trouble and I needed to get on top of this.

Now… to clarify the timeline… I got my pedicure at the beginning of September. I saw the podiatrist at the beginning of November. That’s TWO WHOLE months later. See the issue? I had made all sorts of excuses, had ignored what was going on with my body…and basically put my head in the sand and refused to see that there was a real issue at hand.

A hard head makes a soft behind … everytime.

The podiatrist was pleasant but he was not pleased that I took so long to come and see him. My infection wasn’t that horrible but still it was bad enough. And it could have easily become much, much worse. He had to numb my toe, freeze the skin, clip the nail and cut away a portion of the infected area. I walked like Frankenstein for the rest of the day. (serves me right)

The podiatrist told me a frightening story about a little boy with an infected toe that wasn’t treated properly or within a reasonable timeframe and the infection ate away the bones in his toe. Yikes! Caused him to be hospitalized for a couple of weeks… double yikes! And ended up costing his family over $35,000! (And this was about 20 years ago…so imagine that hospital bill today.)

Sigh. Ms. Nic/Fancy Pants has learned her lesson. (again) I am not as healthy and strong as other people. I have to take extra precautions – even when I don’t feel like it – because the slightest problem can become a major issue. And the longer I wait to address a problem, the worse the problem becomes.

Today, I had to show my crazy toe to my surgeon because she was worried that if the infection was too bad, I would have to reschedule my surgery. (I may do that anyway depending on the results of the mammogram film review but we’ll see) She looked at me with that same pitying look that I was trying to avoid initially… But this one was all on me. (shaking my head…)

So to be clear… NO PEDICURES while you’re in treatment for breast cancer. No matter how pretty the toes could be, the risk of infection is truly not worth it.
 

....janky toe! yuck.

Freaked out by a mammogram

This morning I had a mammogram scheduled. I wasn’t too concerned because it was really just routine checking to make sure that all was well with my remaining breast. I didn’t want to have the mammogram but I knew that I needed to have it done.


So, imagine my state of mind when my “really quick” mammogram turned into a 3 hour ordeal of filming, re-filming, ultrasound, a consultation with the radiologist and a consultation with my plastic surgeon.

I freaked out. My heart dropped when I saw the films and there was a mass – very distinctive – in the breast. I kept telling myself that it couldn’t have been my film, that there must be some mistake…God simply would not do this to me TWICE.

But…if you’ve ever had a mammogram or an irregular pap smear… you know the crazy heart palpitations that immediately start hammering in your chest as soon as they say… “There’s something of concern here”.

Sigh.

I’m freaked out and scared. I want to run home and crawl into the bed. But I can’t. The radiologist did not seem super-concerned BUT at this point; after all that I’ve been through even a little concern is a lot to me. Nothing showed up on the ultrasound. That is a good thing. She wants to review my film from my previous mammogram tomorrow (I have to bring it to the hospital for them) and check it against this morning’s film. I am hoping…and praying and wishing…that it’s nothing.

The plastic surgeon remarked that even if it’s something, its likely small enough that it can be taken care of without radiation to that breast. (Radiation? Wow… how did we get here already?)

It’s a lot to absorb today…my mind is practically shut down. I’ve snotted and cried on the phone to my mother, on my co-worker’s shoulder and on the phone with my best friend…and I’m drained.

The funny thing is that while I was getting the mammogram done, I was chastising myself about feeling negative about the process. The self-chatter was crazy but it was effective. I eventually shut up that little voice that kept screaming… “I hate this!” And I convinced myself that having the mammogram done and knowing if there was anything wrong was so much more valuable than any pain, discomfort that I may have felt during the exam.

Right now, I’m freaked out. Ready to cancel the surgery this week. Just ready to push back and try to regroup and get my head together. I still don’t know the results of the genetic test. I’m worried about this mass that showed up on my mammogram…and most of all I’m just downright scared about being under anesthesia for 10 hours.

Today…it is too much to bear. But I’m going to handle it because I have to. You know…thank God for mommas. My mom let me cry and boohoo over the phone and she didn’t make me feel bad for being so scared. I don’t want to go through this again. But if I have to, I am so grateful to have the people in my life who love and support me through the madness.

why an advance directive is necessary for your life

I'm watching "Last Holiday", the movie with Queen Latifah and LL Cool J. In the movie, Queen is a mousy, quiet woman who is diagnosed with a fatal disease and given 3 weeks to live. In a disturbing twist, her health care plan will not cover the necessary procedure that could save or extend her life. (That little twist played right into my own fears about health insurance with breast cancer...)

As I continue to prepare for surgery, I have to think about (and act upon) some unpleasant tasks. The first one being... preparing for the "just in case" because surgery is a risk and something could happen.  As you know, I'm single, never been married and I have no children. So... I never really thought that I needed a will. And then breast cancer came along and showed me that my life is fragile -- just like everyone else's -- and while I don't have much, there are some things that I would like to share with certain friends and family when I'm gone. And contrary to my own belief, I do have my own thoughts about how I want to live my life... you know, just in case.

Few of us like to think about death. But the reality is that having an illness like breast cancer means that you have to be wholly aware of lots of details about your life and its impact on your loved ones. Now, I'm not going to make you guys think that I'm bold and bravely walking into this "being a grown-up" thing. (laughs) Nothing of the sort is true... but I was reminded the other day that I do have to accept the possibilities that something can go wrong and try to prepare for it.

Prepare an advance directive

When I went to take care of my pre-surgery bloodwork the other day, the administrator asked me for an advance directive. I didn't have one (which was okay) but after I left the hospital, I realized that I actually did have one on-line. Suze Orman (financial guru that she is) has an online will and trust program on her website that will allow you to prepare an advance directive in about 5 minutes.  [Suze Orman, Will and Trust link]  I actually had created an advance directive a couple of months ago. I just had forgotten about it. (Still need to finish that will though)

What is an advance directive?

An advance directive tells your doctor what kind of care you would like to have if you become unable to make medical decisions (if you are in a coma, for example). If you are admitted to the hospital, the hospital staff will probably talk to you about advance directives. A good advance directive describes the kind of treatment you would want depending on how sick you are. For example, the directives would describe what kind of care you want if you have an illness that you are unlikely to recover from, or if you are permanently unconscious. Advance directives usually tell your doctor that you don't want certain kinds of treatment. However, they can also say that you want a certain treatment no matter how ill you are.

 Okay...so here's the deal... take 5 minutes and think about what you would want done if something were to happen while you're in treatment or in surgery (as in my case).

• Is it against your religion to donate your organs? Does anyone know that?
• Do you want the medical team to do whatever it takes to keep you alive or would you want them to let you go in peace, if it looks too bad?
• What do YOU want to happen in YOUR treatment?

I know these aren't sexy thoughts...but its part of the reality of life with cancer. And trust me... its really not that painful at all. Remember the mantra... YOU are the boss of your treatment. That's the song that is playing in my head repeatedly... I am the boss. I am the boss. I am the boss.

Feel me?

The choices I made in my advance directive may not be the same choices that you would make. But that's what makes it such a necessity and also what makes it so very cool. This journey (with all its bumps and curves and hills) is mine. It is not one-size-fits-all... it is custom-fitted for me.

Actually completing the advance directive on Suze's site took about 2 minutes. Literally. She's got it all worked out so that you just fill in a few blanks and bam, you're done. The hardest part was actually thinking before-hand what I want. And committing to it.

Which I did. :)

You are the boss of your treatment plan

I met with the surgeon who performed my mastectomy on last Friday. It was a follow-up visit to make sure that my healing was progressing well and to see how I was reacting to the radiation treatment prior to my scheduled reconstruction. I liked my general surgeon -- he has a fun personality and is very knowledgeable about breast cancer and surgical procedures in that treatment.

We talked for a bit about how I was handling the consideration about removing my breast. I got teary in the midst of our conversation and I explained to him that my logic about losing my breast did not match up with some of the other people in my life whose opinions mattered to me. I mentioned to him that my mother felt that I should get rid of the breast just to reduce the chance that cancer could come back to that breast. He responded that as a parent, he would likely give his child the same advice -- but as a doctor, he knew that removing my breast was not going to zero out my odds of breast cancer happening again. Nor would it keep the cancer I had from recurring.

I said to him that I knew or rather I felt that I was being a big crybaby about all of this and I was really trying to keep it all together. And he looked at me and smiled and said... "If you're being a crybaby... after all that you've been through... then what in the world are the rest of us doing as we go through our lives?"  He told me that I had been through a very traumatic experience and it was okay to cry.

It is okay to cry.

That's something that I know. That's something that I tell my new pink-ribbon sisters when I talk to them. It is really okay to grieve and cry about your situation. But for some reason, I am fighting with myself on a daily basis to grieve over this process. I guess I'm fighting my own tears because I know that I've come a long way and I should be happy that its over. Or almost over. But I really feel like I just let go of a breath I've been holding for a year and now the tears are coming, the fears are surfacing and its difficult.

You are the boss of your treatment.

My surgeon told me that I am the boss of my treatment plan and progress. He reassured me that as long as I was hesitant about removing my breast, it was not the decision that I need to make. That comment made me feel a lot more comfortable about my desire to keep my breast. I will, most likely, have to see the doctor relatively frequently but I'd rather go every 3 months to be checked out than to wake up from surgery without my breast.

Let's hope that this boss is instinctively right.

The law is on my side…but will my employer be? Post-mastectomy procedures must be covered by your insurance.

http://www.dol.gov/ebsa/publications/whcra.html

I just reviewed my benefits renewal information from my employer. (I’m late opening the package but I knew I wasn’t going to change anything on my package so there was no urgency).

Right on the first page is a notification box that refers to “The Women’s Health and Cancer Rights Act of 1998”…which goes on to say that after having a mastectomy my health plan has to cover certain post-mastectomy medical procedures.

By law a breast cancer patient may elect and must be covered for:


• Reconstruction of the breast on which the mastectomy was performed;

• Surgery and reconstruction of the other breast to produce a normal cosmetic appearance;

• Prostheses and

• Physical complications for all stages of mastectomy, including lymphedemas.

Well, right away I’m kicking myself for not opening this envelope a month ago. Would have saved some worries and some anxiety. (Laughs) Although I know (now) that my medical procedures are covered by my health insurance, my worry about my position in my office and with my company remains the same.

Can I salvage or maintain my position with the company in light of all my expected surgeries and medical needs?

I was just briefly chatting on twitter with one of my pink ribbon sisters (@silknsaber) and I was complaining that I was really feeling exhausted with all the medical appointments and pills and bills. I am TIRED! My sister was right there with just the right thing to say and then she hit me with a bombshell. She has had 3 surgeries in 6 months! Yikes.

Can you imagine? She said that she just told her doctor that she’s had enough. She didn’t want to go through anything else for a little while. She said to me that she understood what I was feeling because she too just had reached a point where she did not want to be touched anymore.

Two of the procedures that she’s had done, are definitely in my future – nipple reconstruction. But I will also have a surgery on my remaining breast to make it look more like the reconstructed breast – a little lifting, a little reduction. And when I was thinking about all that she had been going through, it hit me. That’s going to be me next year.

Everyone around me is in a good celebratory mood about the ending of my chemo. My doctors, my colleagues at work, my friends… but not me. To many people, the end of my chemo is the end of the road for my breast cancer treatment. But the honest truth is I have only started on this road. This is not a sprint… it is probably the longest marathon in the world. In fact, I can’t see an end in sight. That scares and depresses me.

If it is my right as a human being and a woman with breast cancer – to do whatever it takes medically to bring myself back to “wholeness” – can someone explain to me HOW it is supposed to happen? I am grateful that the law exists that says that my breasts are important and how they look is important and that my illness should not take that important thing from me. However, the reality is that every surgery means a few things – it means money (either my own or my insurance company’s), it means time (time for the procedure and time to recuperate) and it means adjustment.

Being single with breast cancer not only sucks, it puts you in a very precarious position

As I prepare for the next stage on this journey, I think often about the sister I met online who delayed her reconstruction for 8 years. She too was single like me and I think of her because I can understand her desire to wait so long to take care of this “vanity”. I keep telling myself over and over that I am not crazy for wanting to have a second breast. I am not vain for wanting to look balanced like a normal grown woman. I am not horrible because I’m sick of wearing this “shoulder pad” (that’s what I call my lightweight prosthesis) and sick of worrying whether it’s peeking out through my clothes. I know it’s my right to be restored but I am really wondering how I (or anyone else) can be expected to be a part of any office environment if you’re out frequently taking care of medical issues? How do I balance my illness with my desire to do a good job for my employer?

I carry this guilt with me everyday that I am costing people too much – too much money, too much time, just too much something. Everyday, I look at my colleagues and I wonder what they really think about my schedule. I go to the doctor just about every week, sometimes multiple times in a week and I wonder whether or not they look at me and think I’m slacking or I’m faking. In my heart, I don’t think they feel that way about me (well maybe someone does but its not the majority) but it is difficult convincing my head that it is not true. It’s a hassle feeling this way.

I’ll be out of the office for another 6 weeks this year. I will be out of the office probably for a couple of months next year. And it’s likely that I will disproportionately be absent from work for the rest of my working years. I just want to know who gave this disease the right to take so much from me – for so long. And I really want to know how do I counteract what it is taking away from me?

My friend Sophia wrote a wonderful article for Essence magazine's website (Essence.com) (Sophia's article on Essence.com) about being there for your single sisters who have breast cancer. There are a lot of us who do not have husbands or children but who are fighting this disease with a different sort of support system. I would be crazy (I mean, nut-house crazy for real) if it were not for the prayers of my family and friends, the friends I’ve made on twitter and facebook and the opportunities to connect with other women across the country who are dealing with the same issues at the same time. But as it comes to dealing with my job and the fact that I have to have a job, that I have to have insurance and that if I drop the ball in any way, I’m going to suffer greatly – I become very overwhelmed and afraid.

I do not know how to do this. But somehow, it has to be done.

Making decisions in your breast cancer treatment when you’re terrified

I am TERRIFIED. Absolutely, positively…crazy-girl-on-the-horror-flick SCARED. And I’m scared of making the wrong decision. I have been weighing, contemplating, analyzing, crying, praying and meditating about what I should do next in my treatment plan for breast cancer.

I am holding on to the mantra that my general surgeon gave me last week: “You are the boss.” Doesn’t always feel like I’m the boss, like I’m in charge – but ultimately I am. And if you’re struggling with cancer – or any other huge life-changing issue – you are as well.

It is tough being in charge. You have to trust your instincts and get as much knowledge as you can, as quickly as possible. You have to be resilient and persistent and you have to just have FAITH.

I am resilient and persistent and I do have faith but I also have a lot of fear. Here are the steps I’m taking to move beyond the fear and into the solace of making the right decisions for me.

Steps that move me forward:

• Pray and meditate – this one is obvious and cannot go without saying. I pray everyday. Feels like all day long – I am constantly “shouting out” to Jesus to help me, to strengthen me… to hold me. When I start to feel like the anxiety is choking me that the fear is taking over – I ask others to pray for me. That usually helps a lot.

• Review the situation – this is also basic and easy but I’ve found that when I stop for a moment and really ask myself “what are you making a decision about?”…I usually find that the decision that needs to be made is not the same thing that I’m worried about.

• Remind myself that I can only do what I can do and no more – this one is harder because I feel compelled to do all that I can do, all that I need to, and all that I feel that others expect me to do. That’s a lot of stuff to do – and many days I fail miserably because I’m more focused on what I think other people expect me to do, than what I can do.

• Research the options – sometimes I procrastinate on making a decision by doing extra research. Google is my friend. And very often the more that I research a situation and the options, the better I feel about my instincts about the situation. The more I learn, the more I know.

• Set a deadline to make a decision – sometimes the deadline is inherent in the decision itself. Other times, I have to set an arbitrary deadline just so that I’m not spinning and spinning and spinning. (this is where I am right now)

• Pray and release my decision to the universe – at the end of the day, the person affected by my decision is Nicole. There will always be another way that something could have been done but when I accept that I make the best decisions I know how to make with the information that I have at my disposal…it is okay.

• Walk away – after the decision is made walk away from the thoughts of it. Walk into the steps you need to take to get it done. In the end, all things will work out in your favor. That’s just the way that it goes.



Just writing all of this down has helped me tremendously. I have been struggling and struggling and I’m absolutely worn out. My world around me is chaotic which only tells me that I’ve really been struggling for sometime now. The truth is no one can promise me anything on this journey. None of my doctors can tell me with 100% certainty that any procedure I opt to have – or not have – will be the thing that saves my life, extends my life or makes my life better. In every step I take, there is a possibility of failure, of death or something in-between. Getting to a point where that possibility still feels like the very best thing I can do for myself is a very long journey.

But I am surely getting there. Starting today…I am making decisions that are best for me. Because I am the boss.

Embarrassment preparing for the TRAM flap surgery

Today was my pre-op appointment with my plastic surgeon for my upcoming breast reconstruction surgery. I am having the TRAM flap done. I wanted to have the DIEP flap procedure done – less down time and no muscle cut -- but there is only one doctor in DC who does that procedure and I could not get onto his calendar. I also did not want to travel out of the state/region to have it done because I thought that it would be too difficult to navigate the return trip home afterwards. Going through the airport is already a pain in the butt...imagine after you've had hours of surgery and have been in the hospital for a few days. Yikes. No thank you.

So, after a detailed conversation with my plastic surgeon, I opted for the TRAM flap a few months ago. And promptly put my mind on other things.

This morning, I completely FORGOT that I had this appointment. I was on my way to work, thinking about cupcakes and then the reminder notice pinged on my blackberry. I was stunned. Between me and you, I think that I’m in denial about having this procedure done. I feel like I’m on a runaway train and I can’t find the brakes. And that is really not how it’s supposed to feel.

George Washington University Hospital is a teaching hospital so it is not unusual for student doctors to be with a member of my medical team when I have an appointment. I think that I have a reputation as being a relatively easy patient because it seems that many of my appointments are ones where students are in the room with me and my doctor. Normally, it doesn’t bother me. Today…the two students were guys and it bothered me. Deeply.

After all that I’ve been through; all of the doctors and nurses who have seen my body in various states of dress…I was not prepared to be so embarrassed when the plastic surgeon asked me to drop my pants while she examined my belly area. It felt very invasive. Not cool.

Considering that normally I only get undressed from the waist up…I had not considered dropping my pants. I had not thought about her touching me, in front of two strangers and examining me so intently. Yet, there I was, face burning hot…trying not to look at these two young men too directly because I felt…so exposed and really embarrassed.

I was relieved when she asked them to leave only to be further embarrassed when she pulled out a camera to take pictures of me.

Before my mastectomy and my chemotherapy, I took a picture of myself naked so that I could remember what I looked like before my treatments. However, since my mastectomy, I have refused to take a picture of my body in its current state of disfigurement. I did not want to keep a picture of this crazy radiation scar (hyper-pigmentation) and I did not want to see a picture of my mastectomy scar. Its difficult enough looking at it when I’m in the bathroom alone. I didn’t want proof that breast cancer had changed me so much.

But today…proof does exist. And it’s proof that I won’t even be able to control or hold in my hands because its part of my medical files now. I am so embarrassed and I’m not completely sure why. I am unhappy today. There is so much to do before the surgery and I am still seriously contemplating cancelling it completely and just pretending that I’m okay just the way that I am.

So many things can possibly go wrong. The surgery scares me, to be honest. And while I want to feel like myself again, I’m starting to really accept that I’m never ever going to be that person again in my life. The normal for Nicole before breast cancer just doesn’t exist anymore. And that really hurts.

Today is a day...I could use a big ol' hug. But a cupcake from Red Velvet will have to suffice.

Feeling crazy about testing for the breast cancer gene

No more herceptin!! I'm all done with chemo. I'm all done with my cancer treatments pretty much. How amazing is that? Wednesday was supposed to be another chemo day, and the day that I gave my blood sample for the genetic test. I was really upset in the days leading up to my appointment... thinking about the genetic test for the breast cancer gene and the ramifications afterward had me really worried. It turned out to be my final day of chemo. I was disappointed because I was really looking forward to having some designer cupcakes delivered to the cancer center as a celebration. Ah well...



TESTING FOR THE BRCA1/BRCA2 GENE
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA


After talking to the geneticist....I was more confused and more scared than before I met with her.

The reality is that most women do not carry the breast cancer gene. However, the other side of that coin is that I did have breast cancer and two of my aunts did have breast cancer. And I was diagnosed under 40 years old. That is an unusual situation that means that getting tested is a good idea.

One thing that the geneticist mentioned that I had not thought of, were the ramifications of having a breast cancer genetic test in my history. (sigh)  She tried to reassure me that getting the test was less problematic from a health insurance perspective than having breast cancer. I had not thought of that at all.

How crazy is it that you have to compound your health concerns in the present with insurance, job, and financial concerns in the future?

I would think that insurance companies -- and possible future employers -- would want to know whether or not someone has the breast cancer gene in order to be in a better position to treat the illness before it becomes a huge financial burden. Is it me or is our system rather backwards? We seem to be enslaved to insurance companies who simply DO NOT want to consider preventative health measures. But who do want to give punishment for those who ultimately do have to deal with major health concerns. It makes no sense.

The way that the hospital sets up the testing, you have to come in and meet with the geneticist so that she can explain to you what the test is, what it does and how it works. Then you have to be told that the test costs almost $4,000! (and you have to sign papers that you were informed of this cost) before they will even schedule the blood draw.  The hospital has a system now where they run the paperwork to your insurance company BEFORE they test your sample, to find out whether or not the insurance company will cover any of the costs. Many companies do cover the test cost -- but not completely. So, if my insurance company covers the test, my contribution will be about $500 or so.

Sigh.

I opted to take the test because I feel an obligation to know. I feel an obligation to let my family know whether or not this is something that we need to be aware of. I feel an obligation to myself to do all that I can do to ensure that I am as proactive as possible with my health. I may have a daughter one day -- its a slim thought but a possibility -- and after all I've been through, it would be horrible NOT to know something like this might be lurking in my baby girl's dna.

The test results won't be back for about 2 weeks. I will have to make the decision to keep or remove my breast without knowing the results of my genetic testing.  That is very scary but something that cannot be helped.

5 basics that are critical to surviving a breast cancer diagnosis

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.
2. A notebook or journal -- Getting a diagnosis of breast cancer is almost like getting a crash course in 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.
4. A calendar -- appointments are going to happening quick and fast. You need to carry a calendar with you to your appointments so that you can schedule appointments with relative ease.
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#