Life is a Test and I get Bad Marks

I always did OK in school. My grades were pretty average... A's, B's, C's, whatever. I tried really hard to do well, but sometimes even at my best, I just couldn't get that A. (Or break 1000 in the SATs, but that's another story). Then there are the students who really don't have to study hard or even do homework to get that damn elusive A. I feel like that student in the real life world of my health. Only here, you don't want high marks.

Let me explain, remember when I went for blood work and an ultrasound? Well, I received a call from the doctor's office last month telling me that he wants me to take the CA-125 test over again because, "he thinks it was a false reading." So I cautiously ask, "does that mean the results are high?" The medical assistant responds with, "yes, but the doctor thinks it was a false reading." Ok. I got that. How confident is he with that assessment? I guess we'll see. I am going for blood work this month, so he'll have something to compare the first test to. High marks. Not for the win this time around.

So I did lots of research on the CA-125 via Dr. Google. I know you are surprised by this. I also asked many knowledgeable woman who have first hand experience with the test, and I've come to the conclusion that serial CA-125 tests will be more accurate. Apparently the tests can come back high in pre-menopausal women or just from being a runner. So having a chart of all the tests will be more accurate. My dad forwarded me this recent interesting study done, entitled, "Refining Estimates of Risk for Breast and Ovarian Cancer in BRCA1 and BRCA2 Carriers." I like that low 16% risk I have for Ovarian Cancer, I just hope for once my body doesn't feel like being an overachiever and tries to stick me in that 16%!

I have an appointment with my surgical OBGYN at the end of this month and I will certainly have more to report. For now, can't I just fail at one of life's damn health tests?

- J.

My New Normal

My new normal consists of taking pictures of my foobs (fake + boobs = foobs) when I am concerned something is wrong and I have no one around to show. Kevin is the lucky recipient of said foob pictures. No, I don't send the pictures to his email, I just wait until he comes home to ask his opinion. Lucky him!

Last night's impromptu photo shoot came about after a pretty intense exercise session on my spin bike. I removed my sports bra and there were these huge irregularly shaped red rashes on my skin around my scars. Sometimes I get little red marks after running or sleeping, but nothing this big and never on both!

I quickly grabbed my cell phone and snapped a bunch of pictures. My foobs were loving life, they always knew modeling was in their near future. They are so vain! Once I felt satisfied that I captured the rashes perfectly I jumped in the shower. By the time I finished showering the red marks were long gone. But I was still somewhat concerned.

Kevin and I decided that my skin was just really flushed from exercising. My face gets pretty red after a run in the heat so why wouldn't my foobs? It's just weird because my real breasts never did that. My skin protecting my foobs has changed rather dramatically since my double mastectomy. It looks a little shiny, feels strangely smooth / slippery, while at the same time it has little bumps on the underside. I don't get it! It's the same skin from before! But I guess if you've been traumatized like my poor chest has, you come out of it a little different.

- J.

Something You Should Never Say to a Cancer Survivor

This past Friday I had a blood work appointment and an ultrasound appointment. My OB/GYN wanted to check my CA 125 (cancer antigen 125, which is a tumor marker for ovarian cancer) and my ovaries.

The blood work appointment went well. The woman who took my blood was so nice. She used a butterfly needle on me and it was painless! (Except for that damn tourniquet). I didn't even feel her stick me. Piece of cake!

Then I headed off to my ultrasound appointment. Walking into the ambulatory waiting room, filling out all the paperwork, and waiting for my name to be called was just so nerve wracking! I knew nothing would be revealed to me by the ultrasound tech, but I was so nervous just being there. Also, I had to have a bladder full of liquid for the first half of the ultrasound so I felt like I was going to EXPLODE! Finally my name was called and I followed the technician to a back room.

She performed the first part of the ultrasound and I think her goal was to make me pee my pants. It was cool though to look at the monitor and see my black blob of a bladder moving around on the screen as she took pics of my ovaries. I then had to drain my bladder for the next part of the ultrasound which was a transvaginal ultrasound. That means the technician bounces sound waves off of my inner parts to see what's going on with all my lady parts. It was all rather easy peasy and over in 15 minutes.

The technician waited for me to change so she could escort me down the maze like hallway. As I met up with her she asked me, while gripping my chart in her hands to her chest, "Did you bring anyone with you today?" BOOM! Time stands still. "Uh, no..." I stammer out. Should I have? Is something wrong? Why would she ask that question unless something is wrong? "OK!" She says, "Then you can go out this back entrance."

Oh. OH! Ooohhhhh! She was just showing me an alternative route. Why didn't she just say so? The last time I heard that phrase it was followed by "the biopsy came back positive for cancer." And at that time I didn't bring anyone with me because I figured I didn't need to. Just like for the ultrasound, I felt like I didn't need to bring anyone. So thank goodness no surprises were thrown my way on Friday. There has GOT to be a better way to say, "would you like to go back to the waiting area to exit, or would you like to exit through the super secret back way?"

- J.

It is our choices that show what we truly are...

OK. I've been trying SO hard to not blog about Angelina Jolie and her recent announcement of her double mastectomy. I tried! I know you are rolling your eyes and groaning at this post. I don't blame you. But the news is EVERYWHERE!

I was first tipped off to this news story via c.d. and Twitter. I read Angelina's op-ed piece, "My Medical Choice," in The New York Times and thought "you go girl!" I was proud of her for taking control of her life and also discussing it openly to all of us. Angie and I now have something in common! I would have never imagined that. 

I then knew that the Twitter trolls would be out in full force, so of course I needed to see what the common Twitter folks were saying. Some were giving her props for being so courageous. Then there were the "Angie cut off her boobies?!" tweets, the "she is no longer on my to do list" tweets, and the "I'm offended that she cut off her boobs and is talking about it" tweets. Ugh. Thank you Internet for making everyone so scholarly in the ways of double mastectomies and women's bodies. I expected all of this and it amused me to see others put these trolls in their place. 

Then came the articles, and that's when I couldn't take it any more. Articles written by doctors, nutritionists, news anchors, etc. claiming that Angie self mutilated her body. If only she ate right she wouldn't need to be scared of breast cancer! Double mastectomies are primitive and don't cure breast cancer! She still may get it! She made the wrong decision!

OK! Hold up! How dare anyone tell somebody that they made the wrong decision about their health. First of all, it's none of your damn business! She did what she felt was right for her, her family supported her 100%, and that's all that matters. She watched her mother die from ovarian cancer, she is BRCA 1 positive herself. She did what was right for her and how self righteous you must be to say otherwise or question her decision.

I also find comments like these insulting to the many women who have had double mastectomies. I've never questioned if I did the right thing. Never! I watched as my mother battled breast cancer for 12 years and then pass away from it. I was diagnosed with breast cancer at 29. I then found out I was BRCA 2 positive. It was a no brainer to me. My mom went the lumpectomy / radiation route and in the end it failed her. I am trying something different. Say to me that I maimed myself for no reason. Do it and see what happens. My "don't feed the trolls" rule may not apply.

I don't think anyone who has had to agonize over such a decision actually thinks they are then invincible from breast cancer, or any other cancer for that fact, after their double mastectomy. If anything, it made me more aware of my mortality.

The one thing I do take issue with (and this may be because she was not diagnosed with that dreaded "cancer" word) is Angelina's somewhat blasé approach to the double mastectomy. She said it was pretty easy and she returned back to her normal working life in no time. I know she is probably trying to reassure women that if they are faced with losing their breasts it will all be ok, but it is a tough journey. The pain. The sleepless nights. Missing out on doing just the regular activities you love. The actual scars. The emotional pain. The daily leftover physical aches and pains that linger to this day. It's rough. But if you feel deep down in your heart that you are making the right decision, it WILL be worth it. We are so different and our paths are all unique. What works for one may not work for the other. Don't be afraid to share your story, you just may comfort someone who is starting their journey.

I'm not one bit ashamed of the choice I made. I'm proud. I'll tell anyone who wants to listen. I made the right choice for me and I'm not sorry.

- J.

A Life I Don't Know How To Live In

I so desperately need a "how to be a cancer survivor" booklet, pamphlet, brochure, whatever!

When I was diagnosed there was so much information about breast cancer: what is currently happening in my body, what to expect during and after surgery, how the recovery process will go, the possible side effects, how to exercise during physical therapy, etc etc. I was overwhelmed at times, but also thankful for this wealth of information. I had no problem making the decisions I needed to for my health and I felt confident in the path I was choosing.

I am having a much harder time settling in to my proud cancer-free status. I feel as if cancer has completely robbed me of the normal, carefree life I used to lead. I felt pretty good after my exchange surgery. I felt strong and proud in my cancer survivor role. But my strength and pride seem to be crumbling each day as I just try to return to my normal life. I don't know why this is hitting me all of the sudden right now. It's been over a year now since I've been declared cancer free.

My allergies are killing me this spring. It's causing me some dizziness, light headedness, and an all around feeling of not being able to concentrate. This hit me hard during the weekend and I started to panic. Even this morning on my way to work I had to struggle with myself to not get off the train and just head back home. I just don't feel right and it's because of my damn allergies. I know this, but I feel like I am hyper aware of how much I am not in control of what is happening in my body and that scares me at times.

I discussed with c.d. about going to talk to someone. I feel guilty though. What do I have to complain about really? I didn't have to go through chemo or radiation. I am not on any medication. I am cancer free... so what is my problem?

Any survivors out there who can recommend how my transition into survivorship can go more smoothly? I'll try anything!

- J.

Somewhere Out There

10. That's a big number. It's been 10 years to this day since you passed away. It seems like just yesterday. I replay the evening in my mind at times and it's always so crystal clear. You passed away peacefully in your home surrounded by family.

We had music playing. You know that Music Choice station on Comcast TV? We had that on; thanks to you mom I can never ever listen to that damn "Somewhere Out There" song without turning into a crying, snot puddle mess. Zoe was curled up in a little white fluff ball at the end of your bed. As the night went on and April 15th approached I whispered in your ear that I loved you and you responded with your eyes closed, "I love you too baby." Those words meant the world to me then and still do today. Around 12:30am you took your last breath and I knew everything would be different.

You were the best mom a girl could ask for. I look up to you and hope to have at least an ounce of the beauty, love, compassion, patience, and strength that you possessed. You were filled with wisdom and I was lucky enough to use your own words in my eulogy to you. You wrote in a card once how losing a loved one creates a scar on one's heart. Over time that scar fades a bit and becomes softer. It's always there, but it will always be a gentle, happy reminder of our loved one and all the good times you had together. I couldn't have said it better, and I wouldn't dare try.

I have so many wonderful memories of you. I never forget the good times! We had so many. I dream about you periodically. It's always nice to see your face, you're always smiling. I can still hear your voice, and I think about the things you'd say to me now. As I navigate through my life and deal with all the good and bad things it throws at me, I know you are beside me every step of the way.

I made this video for you just months after you passed away. I cherish it and am so happy I can watch it every day and see you and me together again.

I love you mom.

- J.

We’re all immortal until we have a name of what can kill us...

Can we talk about panic attacks for a post please? What the heck are they all about? I mean really. I'll be fine one minute and then the next minute I am totally psyching myself out.

About two weeks ago I felt like I was having abdomen problems so what do I do? I go exploring of course! I then find a bump. A really teeny tiny bump. Has that always been there? Is it new? What could it be?? So instead of ignoring it I made a doctor appointment. I needed a general physical and blood work done anyway... I show my doctor the bump. He was impressed that I even found it. Doctor, I had cancer, please, I will now find every lump / oddity in my body. He said it was just a cyst. He's felt millions of them, it's not attached to anything, and people get them there all the time. Whew. Safe. For now...

Damn you mind! Why can't you rest? I don't get panic attacks often. Actually, they are quite rare. But I had two small ones on Saturday. Two! One driving with c.d. and then one in the movie theater with Kev. Why? I'm not 100% sure. I had an awful headache while driving so that may have been why. Once one starts it's SO hard to talk myself out of it, but I was able to this time. I try to take really deep breaths and just tell myself it's a panic attack and nothing serious.

Trying to pinpoint the causes are important to me. Usually it's a pain that triggers it and then I think said pain must be leftover cancer cells. But this time I think the panic attacks were triggered by something different. Over the past couple of weeks two young breast cancer bloggers passed away at the ages of 29 (Bridget Spence) and 33 (Lisa Lynch). I was very very saddened to hear about their deaths and could not believe that breast cancer is still claiming such young lives. My mom passed away at the young age of 49 and my aunt at 42. I thought we were done with this. I thought progress was being made. Where is it? I demand it!

Speaking of my mommy, the 10 year anniversary of her death is a week away. I'm actually dreading it. Over the past years it has sucked once the day was here, but the dread never built like it is this year. Maybe I've just been thinking a lot about her lately.

I guess it just seems I have a lot going on in my head. How does one turn it all off? Can ex-cancer patients suffer from PTSD because I feel like I am going crazy over here!

- J.

* This post's title is a quote from Helen Cooksey in an interview she gave HERE with Dr. Susan Love. *