Wednesday, June 29, 2011

C to Double D+

I knew that swelling would be part of post-surgery, but WOW...really a C to a Double D+ or E overnight and only on one side.  It's a good thing I was trapped in a surgical bra.

Two days after surgery you have permission to remove the "corset", gauze and take a shower. I was very excited about this. Once I released the long strip of velcro holding that bra together, I was stunned. I never thought I'd see one boob that big on my body. Maybe there was a time when I wanted larger breast (say, high school when every one was compared), but I didn't expect this large boob that popped out of that bra. Fortunately, I had to wear the surgical bra 24 hours a day for two weeks - Lord, knows nothing else was going to fit. 

The swelling slowly decreased and it's more C and D now. I had to find new bras that would fit, be very supportive, not have underwire and manage the different cup size. Not an easy task. Getting dressed can still be an issue some days. 

The surgeon told me it would take 3 to 4 months for the swelling to completely go down and 9 to 12 months for the breast to fully heal. I'm at 2 months post-surgery and hoping for some decrease in month 3! Because I had lymph nodes removed for biopsy, I also have swelling under my arm (takes "bra over-hang" to a whole new level). Picking and choosing tops from my closet has become a limited selection. There are many things I still can't wear, but big t-shirts hides a lot (just can't wear those everyday). I'm ready to have my two C's back.

Wait, shouldn't people with breast surgery be given a "Fashion Free Card"! 

We should be able to wear whatever we want to any place we want because we are surviving. Call Tim Gunn and have Project Runway whip us up all something fabulous! 

Tuesday, June 28, 2011

Taking the Bull by the Horns

I think you can approach this cancer thing in different ways - "go with the flow and ride it out" or "stop the ride and stand up for yourself".  I choose the latter. 

To me it seems like riding a mechanical bull and just when the ride smooths out, you get thrown. You have to get off the mat and get back on - take charge! 

Grab the bull by the horns!
If you have questions, ask them. Don't accept an answer that is not clear to you.
Just because you have friends or family members that did treatment one way, doesn't mean that's your way.
Your body is still yours! Make sure the cancer team knows that and that you are making decisions.

I made what may seem a controversial decision to some people and good decision to others. I choose to go against the recommended treatment plan and I did not do chemo. It seems to be a rule that if any cancer cells hit a lymph node, chemo is the set path. I had cancer cells (3mm) in one of three nodes and I said NO to CHEMO. Honestly, if there were two or more lymph nodes involved, I'd be in the middle of chemo right now - my decision would have been different.

I did not make this decision lightly. I met with my oncologist (the 2nd /good one) twice before I decided. I read, researched, prayed, soul-searched, ate ice cream and whatever else I needed to do to make this decision. I was told that if I was going to do chemo, I had to start it within 6-8 weeks of surgery - not immediately. I know this only because I asked. This window of time gave me confidence to stop and think through things. 

My oncologist agreed to support my decision and stand as part of my cancer team. Some friends think I am crazy and some don't. I'm not crazy. I did what was right for me and my decision is not right for everyone. Quality of life is very important. Deciding to do chemo to kill off the possible lone cancer cell that may or may not be roaming through my body, was just not that clear to me. What if a cell did not get out of that lymph node? I'd have put toxic chemicals in my body for no reason (early menopause, illness, bone health risks, joint pain and time with no hair). What if there is that lone cancer cell swimming around in body you ask? I'll cross that bridge only if its built. With radiation and tamoxifen, there is a greater than 50% chance that I will never get cancer again.   (* I do know that actual percentage number but I am not sharing as to not influence other people's decisions)

My brother put it best when he said,  "when you look in the mirror everyday are you going to say I wonder if I have cancer somewhere or are you going to look at yourself and know that you are OK?"

I know that I am OK.

Saturday, June 25, 2011

Back to the Waiting Game

Once I again I found myself waiting for a phone call. A phone call to let me know whether or not the three lymph nodes removed during surgery for biopsy, had any cancer cells in them. 

I was hopeful that they would all be clean, healthy little nodes, but I was wrong. 

My surgeon called a few days after my surgery to tell me that one lymph node had 3mm of cancer cells in it - the other nodes looked great (not sure what a lymph node is suppose to look like, but "great" sounded perfect to me). This one node changed my breast cancer status from Stage I to Stage II. It also would greatly impact the treatment options my oncologist would have for me. 

Could I not catch a freakin' break?! Really? Wasn't breast cancer enough? Did it have to hit one node too?
Here's where I hit mad as hell and later ended up on my kitchen floor hysterically crying!  

Two days after the bad news node call, I was in the oncologist office with my brother. Team C Cup members were prepped and ready to go, but my brother trumped the Team. This experience did not go as well as all the other experiences I had had in this hospital. I knew the oncologist was going to say "chemo" to me, but I didn't expect his lack of bedside manner. I was stunned when people started throwing wig sheets at me without giving me a moment to process any news! I was outraged that this man was telling me "I'd feel fine by winter" with some very short hairs on my head with no ounce of compassion or concern. I was angry that when I started crying, he did not get up to get the box of Kleenex for me! My brother tried to get to it but was trapped behind the table. The nurse next to the box never moved. I got up and got the damn box myself!

When I tried to ask questions about this recommended treatment (type of chemo, drugs involved etc), he was not very open with information. I realize I am not a doctor or a chemist, but I am not stupid and this was still my body. My brother could sense my frustration and he started asking questions to get the information we both wanted. I asked about more specifics- breakdown of the type of cancer, etc -  the oncologist responded, "you can Google yourself to death if you want to". Again, so not the right thing to say!

The physical exam did not go well either. I was moved to another room, gowned up and perched on an examination table. This oncologist knew that I was still not a week out from surgery, but that didn't stop him from man-handling (no pun intended) my very swollen and sore boob. I let him know he was hurting me, but got no response. He made it very clear that he "was only interested in this part of me (as he point to my cancer boob) and that my surgeon and other doctors would take care of the rest of me".  Last time I checked, I was still a total package - not a doll with parts to be assigned. 

Before the meeting was over, I was handed a date to start chemo and this list of things I had to complete before the set start date. Wait, wait...I never said yes to this...I've not had time to think about it. 

I took the weekend to think about what I wanted, what was best for me and do some reading and soul-searching. I decided that what I needed was a new oncologist! If I was going to be followed by this person for the next 5 to 10 years of my life, I should have a connection with them. Monday morning I was on the phone with my patient educator (who is awesome) relaying my experience and she immediately got me in with a different oncologist.

The meeting with the 2nd oncologist was much better. We talked for about an hour and everything was spelled out to me - including options (2 choices of chemo instead of 1 choice). There were numbers, percentages and information that I could see, read and process. This was my oncologist! Chemo was still the preferred and recommended plan for my treatment but at least now I felt more comfortable with the whole process.

Time for me to make them wait. I had waited on phone calls and now I wanted to take my time and make my decision for my body. They could wait.

Tuesday, June 21, 2011

Not Amused

Today I ran across an article that discusses changing the guidelines for mammograms. It made my blood pressure rise! (see story link below)

If it had not been for a yearly mammogram at the age of 40, 41, 42 and 43 my breast cancer would not have been found until it was well past a stage I or II. My cancer wasn't there at the March 2010 mammogram, but it was there (8mm) in March 2011. 

1 in 8 women get breast cancer and a majority of those cases are not genetic (so my cancer team told me).

Until there is a cure, fight for your rights! Its your body and you should have early mammograms.

Monday, June 20, 2011

"In union there is strength." ~ Aesop

Now that I had the diagnosis, a surgeon and surgery date, I needed my friends more than ever. I brought six girl friends together and formed Team C Cup - my team, my support group! I honestly do not know how I would have gotten through the diagnosis, wait time and surgery without Team C Cup, my brother and sister-in-law and a few other close friends. 

Team C Cup took turns checking on me, taking me to appointments and helping me celebrate the last Saturday night I had with my "normal" boobs. They even took a tag-team approach to my day of surgery.  

Surgery was a very long day that started at 8:30am with a guide wire inserted via needle into the offending boob. The guide wire was to make sure the surgeon got to THE spot easier. Yes, it's as strange as it sounds to have a wire sticking out of your breast (at least it was taped down and lidocaine was involved). You know that you are in for some fun when there are smelling salts placed nearby and extras on the counter. The nurse that was with me was very upfront and told me exactly what was going to happen and how - which I really appreciated. She added that a lot of people faint during this wire placement. Wow, I'd never fainted before and was not ready to try it. Thankfully I didn't faint, but it did take me a few minutes to get in the wheelchair. I didn't want the wheelchair at first (I was going to walk through this thing - head up, shoulders back) but it is important to recognize when you do need help...and say "yes" to the wheelchair. 

Next we were off to radiology for sentinel lymph node mapping. Shift 1 of Team C Cup rolled me there and kept my spirits up as I sat in my chariot, in a hospital gown with my clothes in a bag...oh, and the wire. Then it was my turn. I was taken to this large x-ray machine thing, stretched out and got as comfortable as possible.  The technician reviewed the procedure with me and then out came many more needles. She made me feel comfortable and we actually shared a few jokes. There was no laughing during the needle part. Thank you lidocaine for making all those needle sticks around my areola practically painless (honestly, I could have had my nipple pierced and not felt it).  Waiting for the dye to move around in your body and hit those three lymph nodes while under x-ray takes some time. Fortunately, the technician and I found things in common and had a fun conversation. She was also very sensitive to my situation, kind and caring. I should thank her and the lidocaine. 

Next up, the surgery waiting area. Shift 1 of Team C Cup wheeled me through the hospital to our next stop (for fun, I repeated "wee, wee, weeee" like the Geico pig as we moved through the hospital - wanted to keep the Team entertained and I had some nervous energy to burn). We had a nice little room where we would hang out until my surgery time. Shortly after getting in bed and receiving my "fancy" compression stockings, Shift 2 of Team C Cup arrived and my room became the "party room" per the nursing staff. The "party" got even better when my brother and sister-in-law arrived. The nursing staff, anesthesiologist, etc. kept checking in, updating me and making sure I was OK. I think the nurses were having fun visiting my room. Oh, I should mention the heated blankets - those things are like Xanax. As things go, the surgery was delayed by several hours (more complicated case in front of mine and it took longer than expected). Shift 1 of Team C Cup was relieved and Shift 2 remained. 

In a moment of quiet, it was just me and one Team Member, I took a breath and tried to accept that I was now leaving "the land of denial" which had been my comfort zone. It was almost as if my friend could read my mind. She seemed to know exactly what to say - what I needed to hear. The delay almost made me lose it. 

All of the sudden, I had what I'll call 3 margaritas via injection from the anesthesiologist and away we went. I saw the operating room and all the people that would be a part of my surgery. I was then counting to 100 with a mask on my face and out - might have gotten to number 4. 

Waking up in the recovery area was odd yet calming. The surgery was over, I was OK and nothing had gone wrong. My Team had been updated and all was well. I was returned to my "party room" (which was much more low-key now) where I'd wait to be discharged. Here's the thing, you have to eat something, drink something and go to the bathroom before you can be discharged. Going to the bathroom was not going to be easy since I'd had nothing to drink for over 12 hours. I was given water, ginger ale and saltine crackers. I took me about an hour to eat one cracker - paste, it became paste in my mouth that I could not swallow. Finally, I was moving around better and had completed the needed task - time to go home. 

I won't get into the complete comedy of errors which was me trying to ascend 43 stairs to my apartment. My brother stayed right behind me to make sure I didn't fall backwards and I was clinging to the wall like it was a ride at a fair. I got into my pajamas which covered the world's most unattractive surgical bra and then entertained and tried to eat again. Shift 1 of Team C Cup lives in my building so they came over to see how I was doing (and possibly giggle at me still not being completely clear headed from anesthesia). I handed out the extra set of keys to my apartment so that Team C Cup could come in and out of my apartment and check on me during the night. By 10:00pm or so, everyone was leaving and I was heading to bed with my Norco pain medication on board.  

Once I got into bed, I had a few minutes before I feel asleep and in those minutes I was grateful. 

Friday, June 10, 2011

I Was Minding My Own Business When...

Maybe I should start from the beginning. I've always been good about having yearly mammograms- starting with baseline at 35 and then every year once I turned 40.
This past March I had a mammogram then an ultrasound because there seemed to be some cysts in my left breast. One of those cysts "didn't look right" and I was told it was 90-95% benign. I was scheduled for an aspiration of this cyst within two weeks. 

The aspiration didn't happen because things weren't lining up just so from ultrasound image and mammogram image. Although it was a little uncomfortable and took a long time, I really appreciated their attention to detail in finding THE spot. I was not looking forward to have a needle put in my boob and fluid sucked out - but, that would have been good news. 
Instead I was put in some medieval torture device, with my left boob in a hole and then lifted up like a car for an oil change. Then, the mammogram squeeze, a shot and pain (it hurt, but only for a minute). The solid cyst was removed and sent to the lab for testing (really wish I had not seen my blob in a jar from across the room). I was stuck on the table in this most awkward position for 10 mins to stop the bleeding. 

Those were the longest 10 minutes I had ever experienced (up to that day anyway). While I was laying there on my stomach, boob in a hole, waiting for the bleeding to stop I realized this may not be the "90-95% chance benign" cyst anymore. It hit me that this really could be "the big C". My boob was numb and so was I.

Once I pulled myself together and found a moment of comfort in the friend that was waiting for me, I got the hell out of that hospital. Ice cream was in order - I needed a prize and my friend needed a bigger prize for waiting all that time. The ice cream helped me and the ice pack tucked in my bra helped the biopsy site.

In a matter of days my life was completely turned upside down. The phone call came and I heard the words I never wanted or expected to hear. I had breast cancer. A tiny thing (8mm in duct and 2 mm out of duct), but still it was there. I was told how great it was to have been caught early, blah, blah, blah (really, that's all I heard after the C bomb was dropped).  Stunned, shocked and then crying like crazy and calling my best friend, was all I could manage.

It took me days to tell anyone else and I could barely get the words out without crying. I found "the land of denial" was a nice place to be while I waiting for my surgery. Oh, the ice cream helped too. 

Thursday, June 9, 2011

Mammograms All Around

No one should wait until Breast Cancer Awareness Month to think about mammograms and self-exams. This site provides free mammograms to people in need - all you have to do is click on the link.

My breast cancer was found during a yearly mammogram. No lump to be felt, no other signs....if it wasn't for the yearly mammogram who knows when it would have been detected. Mine was found early and was treatable.
Help others get a mammogram - it's just a click away. 

Monday, June 6, 2011

No One Mentioned the Scale

Day 4 complete. That's four radiation treatments down and twenty-nine more to go...
This part is not so bad. It takes longer to get in the hospital gown and in position than the actual treatment lasts. Yes, the zapping, as I call it, takes less than five minutes. 

Today is Monday and on Mondays I learned "everyone is weighed". I was zapped and then led to the scale which was in full view of everyone. I was able to ditch the sandals and purse before I jumped aboard. I refer to this as the "Weight Watchers" portion of the treatment. No one told me that every Monday I get to stand on a scale and watch red digital numbers come up and look at me...exposing my weight to me, the nurse and anyone else nearby. These red numbers are put in my file and I'll get to see them every Monday as they go up, down or don't budge (down is my preference). 

Note to self: on Mondays wear very light cotton garments to radiation treatment.

Thursday, June 2, 2011

To Test or Not to Test

BRCA1 and BRCA 2
If you don't know about genetic testing and breast cancer, there is a lot to learn. The information is fascinating and interesting (if you like science), but it also very personal and not for everyone. Before you agree to it, you have to be ready and willing to hear the results. 
I did it - I had the genetic testing done. 
Since I was diagnosed with breast cancer at under 45 years of age, I was a "prime candidate" the doctors told me. I didn't hesitate to move ahead with the test, but I wasn't ready to hear what a BRCA positive result would mean. I was counseled prior to the blood draw and told I could cancel the test at anytime.....and if I never wanted to know, I didn't have to come back. 

Two weeks. It takes two weeks for the results to come back. If you are told you do have the BRCA gene, extra breast screening or radical double mastectomy is recommended, not to mention the removal of your ovaries. Since ovarian cancer is harder to detect and therefore discovered often in a later stage and not as treatable, removing them is the best protection. My oncologist told me that if I tested positive for BRCA, that she'd want me to consider having my ovaries removed within a year or two (but I sensed that sooner was the push). So not only was I still recovering from the lumpectomy, I was facing chemo and/ or radiation treatment and thinking about the possibility of having pieces of me removed within a year. 

I understand why some women don't want to have this test. 

I also learned that if I did test positive, that result would impact my brother - increase his risk of male breast cancer by a small amount, but really increase his chances of getting prostrate cancer. I don't have a sister and I cannot imagine what it would be like to pass along news of a positive BRCA test.
The days went quickly and I wasn't too concerned until the night before I was to hear the final answer. I was full of what ifs and what will I dos....

I got that answer today and luckily I am negative.

The Unseen Effect of Underwire

No, really...I did not see this coming at all. I thought I was doing well - felt good (physically and emotionally) and then I was faced with the news that I could not wear underwire bras during treatment.
I began by hitting department stores to find a few bras that I could wear for the next 6-8 weeks. Once I got in the dressing room and realized that they don't fit or work like bras with wire, I became irritated. Then there were tears.
I had breast cancer - surgery to remove the tumor spot this past April and now starting radiation. You think you are doing OK and then there it is - the cancer thing screwing with your plans! No scoop neck tops for the summer, no shaving the left arm pit, only non-metallic deodorant on that side and then you are staring at yourself in a dressing room realizing you can not even select the bra you want. The treatment is making all your decisions for you.
Don't get me wrong. I am very fortunate that the cancer was found early (yearly screening) and that it was treatable but I never saw myself crying in a dressing room about a bra.

I found that having a few minutes of just being mad as hell helps when things like this happen. Laughing as much as possible is highly recommended. Looking for the bright side (hair under left arm pit might never grow back) no matter how hard it is to see is worth it!