Would Health Care Reform Deem My Mammogram Necessary Before Age 40?

Today, President Obama spoke to the AMA about Healthcare Reform. I agree that something needs to be done about healthcare. My husband lost his job in November. His company covered our health insurance through January 31st and COBRA kicked in on February 1st. Unfortunately, our 18 month old daughter had to take an ambulance ride to the emergency room on February 1st and, to the hospital, it looked as if we weren't covered by insurance. The ambulance ride bill was $1,800. The unisured patient discount was $1,500. We were officially charged the difference. However, once COBRA did kick in, the insurance company paid the fee and we did not pay anything. No one can argue that the ambulance ride uninsured charge and discount demonstrates a breakdown in our system, however, this same February, a new doctor sent me, 37 years old, for my first mammogram. She didn't feel anything, she just thought I should have a baseline mammogram. They found something so small it couldn't be felt, but after my biopsy was performed in the office with results back to me 30 minutes later, I was told that I had breast cancer. I made the decision to have a bilateral mastectomy and was able to find a surgeon and have the surgery 6 weeks later. Now I am undergoing chemotherapy.While I understand that President Obama's plan places an emphasis on preventitive care, most doctors don't send their patients for their first mammogram until age 40. My oncologist and cancer surgeons both told me that my cancer was fast-growing and could have been a much more dire situation if it had it been been detected a year, much less three years, later. Who knows whether my doctor would have felt comfortable sending me for the mammogram when she did if she had to worry about penalties for "unneccessary tests." Who knows whether those people, like me, who do not fall into a "high risk" category would be allowed to go for such tests before age 40? I want my doctors to feel comfortable sending me for any tests they deem important, whether an insurance company or the governement feels otherwise. This doctor and this test saved my life and to me, that is very necessary.

Chemotherapy - Treatment One

I can be cool. I can pretend that I can handle anything. I can go for my first treatment with confidence, chat with the nurses and doctors, pretend that I am okay...but I am not.

I definitely took the anti-anxitey meds they gave me that day and waited for the side effects to happen. I didn't sit around and wait, I was out doing stuff, walking power walks, playing with the kids. But after my Wednesday treatment, Sunday was pretty awful. First of all, I guess I wasn't taking enough of the anti-anxiety medication at night so I had not been sleeping for a few nights anyway, but by Sunday, I was a wreck. My husband took the kids to a birthday party and I had planned to take a walk to garner some energy, but my husband told me to take a rest. So, I sat on the couch all morning unable to move. My stomach was a complete wreck, diharrea, so I couldn't be far away from a toilet, and I couldn't even go to the park with the kids. I couldn't eat anything.

Okay, so while I really felt awful, I know it could have been alot worse, and that's what hit me...this is going to get worse. I am going to continue to feel nausea throughout the two weeks, unable to sleep without taking two anti-anxiety pills...

Now I have to wonder how soon after my next treatment that my hair will fall out. People keep telling me how great I will look bald, but I DON'T WANT TO LOOK BALD! I don't want to lose my eyelashes (though I haven't had a bikini wax in over 2 months, and while I really want one, if it is all really going to fall out, what's the point now??? But oh, that is so gross, I really cannot stand to look at that!) I might be more upset about my eyelashes than my hair. I bought two wigs so I am ready for it. I cut my hair very short and snet the long hair to Locks for Love so I'd feel like someone was getting something good from the hair. I brought the kids with me to look at the wigs so that they wouldn't be surprised. Cut my hair short to get them used to it.

But I am so uncomfortable about the next treatment. All I see are the red vials of poison waitijng to go in my veins...it makes me feel sick to think about it. I had wanted to write something short about it, and I have, and now I am going to bed

Filler up, please?

So, now I'll talk about the expansion process. First of all, my plastic surgeon has the bedside manner of a hobit. He made me feel like my breasts were never going to look good afterwards and said outright that if I was going through a mastectomy for cosmetic purposes, I had the wrong idea. Are you fucking kidding me?

I mean, yes, I did and still do have hopes that my breasts look great when this process is done, this was FAR from my reasoning to have the double mastectomy. I was going for peace of mind, not waking up every morning thinking I still had cancer in my breast, you know, reasonable considerations.

I did go for a second opinion, and that plastic surgeon assured me that while my surgeon had awful bedside manner (much different than my cancer surgeon who is a saint) that he did good work and was really just a perfectionist. I could handle that.

So, after my surgery, this guy looked at my boobs once a week to determine the next step. Step one was to get out the disgusting drains. Couldn't have been more thrilled that they were out less than a week after surgery. Boy, were those things painful and pulling and gross and ugh! I came back the next week, and two nurses took syringes filled with saline, and literally, within 20 seconds, my breast size had grown! I have little metal ports that make this process so easy! Then, the doc would come in, look at his work and say he'd see me in a week.

I went through this process five times, the last one was the worst. See, the purpose of these expensions in to expand the pectoral muscle, because once all the breast tissue is gone, there is nothing left to hold up an implant, so for a mastectomy patient, the implant goes behind the pectoral muscle, which needs to be stretched to withstand the new implant. I could not lay down flat, or at all for a few weeks after the last stretching. As much as I wanted my breasts to be as big as they had been before, my pectoral muscle reminded me they could only be so big. So, while they will be quite perky and braless for all eternity, they will never quite be the size they were before.

I just cannot wait for the new ones to come in so I can feel something other than hard rocks behind my skin...

Mamma got a new rack

Well, it has been just over two months since I had a double mastectomy. I can say that it has been the craziest two months in my entire life. I feel the need to write down not only what happened but my progress since then, as I intend to use this blog as my diary of sorts.

I can remember double dosing my Xanax the night before my surgery (per my surgeon's suggestion) and thinking more about potential complications that might occur than the fact that I was having cancer cut out of my body and my old breasts removed and replaced with new models...Why was I so concerned about complications? I'll get to that blog another time, but it has to do with my brother dying from complications to elective surgery.

But my husband, mom and dad stayed with me while I had my surgery...well, in the waiting room. I remember being brought into the room and being woken afterward that the surgery went well, followed by the most searing pain in my chest. I told the surgeon I was glad that things had gone well, but that I really hurt and wanted to not hurt.

I don't remember much about the hospital after that. I remember worrying that I wouldn't be able to get around, like I couldn't after my 3 c-sections, but I was surprisingly mobile...outside of the fact that I couldn't get my hands over my head, literally, but I could move around surprisingly well!

I remember trying all sorts of pain medications because nothing seemed to cut through my pain. The nurse was so patient and told me to try some pain management consistency...she was also not surprised that my cocktail of pain management choices caused me to vomit...but I felt fine after that.

I do remember walking the hallway with my husband the day after the surgery with a huge smile on my face. As much as I had loved my breasts and was sad to part with them, I felt no remorse at all afterwards. In fact, I was smiling from ear to ear because I was so happy to know that the cancer was gone...until I started looking around at the other women and talking with them. Those who were there for their second or third time didn't talk in terms of not expecting to be in the hospital again, they were just there for some other procedure, cancer removal. I thought, "Holy shit! Not only did I have something in my body that could have killed me (was kind of in denial about that), but this might NOT be the end of it." That's why the nurses wouldn't agree with me when I said goodbye and I would never see them again. All these women on my hospital floor probably felt the same thing I thought when they left for the first time. I pray to G-d that I don't have to see that hospital floor ever again, but seeing the other women there made me feel less certain.

But, I got past that and was very excited to come home two days later. Four drainage tubes coming out from under my arms, and flatter than I was at the age of twelve, I came home. It was very hard to come home, emotionally and physically. I still couldn't lift my arms over my head and couldn't really hug my three little kids or pick them up. When my 3 1/2 year old felt the drainage tubes, she seemed confused. I tried to be very open and matter of fact that they were no big deal. I asked her if she wanted to see them. I only showed the bottom of the tube which hung by my waist...she was totally freaked out for the rest of the night. It was very depressing. I couldn't help myself or console my daughter. Not great. Then, a few days later she told me she didn't like me anymore. I told her that I was sorry to hear that but that I still loved her very much. Oh, didn't that kill me.

Plus, I'm drugged out from pain killers, I have to have my husband drain my tubes twice a day, I cannot find a comfortable place to sleep at night, I have foreign material in my chest (chest expanders) that felt uncomfortable AND I was unable to take a shower for two days after the drainage tubes came out and I had just come home from the hospital! What a nightmare! AND i was trying to pretend that I was okay and everything was cool...it was rough.

Thankfully, I had my drainage tubes taken out just 6 days after surgery and was able to take a shower two days later. Still, barely able to get my arms anywhere over my head, after doing my exercises 5 times a day, I not only took my first shower, but I somehow ambled my arms over my head enough to wash my hair. I looked like crap but I was so proud of myself!

By a month I was able to put my arms entirely over my head and by six weeks I was picking up my kids and doing everything pretty much normally. Sleep is still a little rough on my sides, but I can remember thinking that I'll NEVER be able to sleep on my sides again. Only two months later, I can do it!!!

When I talked to the surgeon a week after my surgery, she was very optimistic that they had gotten rid of all of the cancer. I had a small invasive ductal carcinoma, 9 mm all in, and it had not spread to my lymph nodes. My cancer surgeon said they were waiting for some other test results to come back, but she was fairly certain I was not going to need chemotherapy based on the size of my cancer.

But my cancer was smart. And I passed a test I would have rather failed. I tested positive for Her2Neu...some protein that tells cancer to grow like the 6 Million Dollar Man - stronger, faster, harder - I was going to need chemo. The thought wasn't that I did have cancer still in my body, but if, on the off chance a microscopic cancer cell got into my bloodstream, it would land somewhere and grow like weeds.

When I got that news, I was devistated. I could handle new boobs, but poisoning my body with chemo, I just couldn't deal with. I didn't want to lose my hair and look and feel sick. I have three small kids, I don't have time for this! Well, more about this later, but here's the positive spin as I can see it:

1. I never have to wear a bra again (unless I want to). These ladies stand upright and, while I don't have the final implants but just expanders, they do look quite nice, and nicer than I had expected!

2. I don't have cancer in my body and I don't have to be paranoid again that the cancer will come back in my breasts because there is no more breast tissue for cancer to return! Yes, I still have to worry about a microscopic cancer cell, but I no longer have big pieces in my body.

3. I don't have to wear a bra ever again and they already look good!

4. I will be around to dance at my grandchildrens' weddings!

5. I will be here to bug my husband forever and ever!

I count my blessings for how well things turned out if they had to with having cancer:

Having the miscarriage I had last fall was not only a sanity saver (4 kids under 5 would have been nuts for me!) but a life saver. I would still be pregnant today with a tumor growing if I had not had the miscarriage...and I would have put off taking care of myself for at least a few more years while I was taking care of a newborn...who knows how big the tumor would have been by then!

My husband losing his job with money in the bank was a godsend. He has been the family's rock since this happened to me. He wasn't thrown into this quickly, he had been home a few months to know our routine and make sure the kids were well adjusted during this time.

They got all the cancer out because there wasn't much there to get!

I ask myself daily what I did wrong to deserve this. I know I will never know but I still feel like I pissed off g-d and now me and my family have to suffer, but I also know that I cannot go back but go fowrard and I hope that by doing so strong and with my head held high, at least I'll come out on the other side a happier and better person than I had before...

MRIs - like a bad guitar lesson

I had my first MRI yesterday. What an experience. I had forgotten a CD to listen to during the procedure, but it didn't matter. Anytime the MRI was running, it was so loud, I couldn't even hear the annoying classical music piping through my headphones!

All I could think of was that I was at a rock concert for beginner electric guitar players. Each one had found an off-key note that they thought they were playing well and would play it over and over and over again...and VERY loud!!! I am not sure whether it took more or less than 30 minutes, because I didn't wear my watch, however, it was very uneventful.

Today, I found out that I have to go back for additional testing because they found a 3mm "enhancy nodule" near the original cancer spot. I spent all morning worrying that I had more cancer that had spread since they found this nodule very near to the original cancer spot (still waiting for a second opinioon to confirm that spot is cancer). Then I realized that I should call the surgeon's office that told me I had an enhancy nodule to see what it was. Apparently, they are not sure what it is, which is why I am going for a test tomorrow to see what it is, but I've had it for today. I seriously cannot deal with my three kids plus one playdate right now.

I apologized to my husband who is sitting home with strep throat right now, and asked him to watch them all. Well, now my beautiful 3 1/2 year old is sitting and watching cartoons with me, but that is okay, I could use some company!

I know that this is all going to be okay in a few months, and I have been trying to be so positive so far, but I've lost it today. I just want to lay down for the rest of the day and not think about anything. So that is what I plan to do...

Just 5 Days

Who knew that a year could go by in five days. Just five days! Five days ago, I went to have a follow-up mammogram and ultrasound after having my first one the month before. Everyone from my own doctor to the mammogram technician assured me that this was just a follow-up baseline mammogram which happens to a lot of first-timers...

So, five days ago, I had the mammogram, breast pressed as flat as a pannini (thanks to Honestly and Sincerely for that graphic description!). Then, some waiting. Then, the ultrasound. As the technician was scanning my breast, I asked her, "So, I guess you don't take any pictures if you don't see anything." She said, "yes", and not a minute later, she took a picture of something.

The tech said she just wanted to show it to the doctor, no big deal. I had a good book that I had started, The Border of Truth by Victoria Redel, so I didn't mind waiting. The tech comes back. I need to consent to some needle in my breast. It will only take 10 seconds for the procedure and 30 minutes to get the results. "Okay, but can I keep reading my book until we start?" The tech said yes. So, I had a fine needle aspiration biopsy. It did hurt, even in my tricep muscle, but it was over fairly quickly. Back to the waiting room and more reading!

Then they press my boob some more and more waiting. More book, so no problemo.

Then, the doctor calls me into an office. She asks me how I'm doing and I said that I'd be fine as long as she said I was okay. Then she tells me that the test came back positive. I was always a good student, but this was one time I was hoping to hear I had failed. I was too emotional to ask the details and she even told me that I wouldn't remember anything anyway. The only other thing I remember her saying is that breast cancer is curable.

Then, some nurse comes in and tells me that I need to find a surgeon and have an MRI and my treatment could be anything from hormone therapy to lumpectomy with radiation to mastectomy. I was FLOORED. I mean, I have other health problems in my family and would have expected any of those as a possibility, but not breast cancer!

I mean, if there is anything on my body that I am really attached to, not just physically but emotionally, it is the ladies. And, these are no girls, but these ta-tas are my ladies. 34DD, thank you very much! They are even big enough that they extend out farther than my 3 c-section belly that I haven't tried to get rid of yet! So, to tell me that there was something wrong with the ladies, was VERY upsetting!

I think I spent the rest of the days in tears and schock. I know my 3 year old (I also have a 4 1/2 year old and 16 month old) has been sensing it since then. She surely has been acting differently since then!


But this has just been such a whirlwind since then. Thankfully, but unthankfully, my husband, Rob, has an aunt who just had breast cancer surgery last year. So, Rob called her on Thursday night to get a list of her surgeons.

So, by Friday morning, I was calling doctor's offices. They were asking all sorts of questions about what kind of cancer I had, and I just kept telling them that I had a 5mm spot on my left breast at the 2:oo position. I didn't even know how many different types of breast cancer there were. Still, everyone was (and still is) so helpful and gentle. You mention the word "cancer" and people really do want to make things easy on you. I think I spent the entire day talking to people, telling my friends and family the story over and over again. By the end of the day, I had an MRI scheduled for Tuesday and an appointment with a surgeon for late in the month.

I was still a wreck, but at that point, I just realized that fear was not going to make this go away. That waiting was not going to make this go away. And, while I hold out a slight glimmer of hope that the diagnosis was incorrect (waiting for the second opinion), I know that standing still is not an option. So, now I know that I will make myself available for any poking and prodding, and questioning and waiting. I have three little kids and the most awesome and supportive husband I could ask for. Right now I am totally ready to say goodbye to my ladies who have brought me pride all these years and replace them with newer models. In fact, a surgeon is going to have to do quite a convincing act to prove to me that something other than a double mastectomy will give me 100 percent certainty that I will not have breast cancer again. But, I promise to keep an open mind and get second opinions and the like.

I know breast cancer is curable. I know my doctor, who sent me to get my first mammogram at 37 because my breast tissue was dense and wanted me to get a baseline for the future, was as surprised as I was at this outcome. I am greatful to my doctor for being proactive, because even my OB-GYN didn't catch this nor saw any reason to send me for a mammogram. I feel somewhat silly for making this such a rush for such a small mound of bad stuff, because there are women out there in much worse situations than I am, but I know that no matter how small the mass is, it needs to come out asap.

Whew! Enough for tonight. Like I said, last Thursday (and it is Tuesday now) seems like a year ago. I am glad I was able to remember as much detail as I did. I'll keep you posted with my progress. Next blog, I will take the role of Debbie Downer and tell you all the crappy things that have happened to me in the past year. My only sibling, my brother, died a year ago. This fall, I had a miscarriage at 6 weeks (really, I didn't want more kids, but once I had accepted I was having a 4th child, I had a miscarriage), this winter, my husband took a package and got laid off from his company, a month ago, my 15 month old lost the tip of her left ring finger when another kid slammed a door on her hand (she should be okay, but being right there, I felt like I was in a horror film...) I think that's enough for the past 12 months, right? But I have awesome kids who make me laugh every day. And I know my husband will find a job, but I am so glad he is home right now. If he was working his crazy hours, how would I get through this crap???

AND finding out I have cancer puts all the other crap into perspective. So, yay for cancer giving me a better outlook on what's important! Screw that! Couldn't god have found some other way to teach me this lesson???

god bless health insurance

Health insurance is so great!
Go to doctors, don't procrastinate!
Healthy checks are really cool
And dental visits, too, so you have teeth and don't drool!

Or when your daughter's finger is caught in the door
And the tip is in front of you, unconnected to her, on the floor
It's nice to know the plastic surgeon is covered
And the ambulance ride, too! (My first time ever!)

And your first mammogram
With your breasts pressed like ham
You ask how much is out of pocket
And the receptionist says, "Fuggetaboutit!!!"

And the trip to the doc
With the preschooler and tot
You think you pay alot?
With insurance I say, "NOT!"

The crazy thing about this rhyme
Is that this stuff all happened in such a short time
From Sunday to Friday, just this last week!
I sure hope this one goes by without a peep!