Catch up time; closing out 2010...profound changes

Wow, so someone pointed out to me that I had not updated my blog since August (gasp!) I think it was during August (my birthday month), that I began to detatch myself somewhat from the identity of "breast cancer patient/survivor." I had my first test results...they were negative for signs of cancer, and I was nearing the end of over a year of treatment. Honestly, I remember just trying to forget about cancer and all I had been through because of it. I wanted to be "normal" again (whatever the hell that is exactly). The funny thing is, major illness or extreme life events change you forever...in good ways, bad ways, whatever--however you allow them to alter you they do. I am forever a different person because of what I have experienced. I hope, and I believe, I am a better person.

September and October were strange months for me. I was dealing with the fact that I was to begin shifting "roles." Soon, I would no longer be "on treatment;" someone who went to the Cancer doc to get meds (Herceptin) injected every 3 weeks. Normally, the loss of a role causes some sort of grieving. How strange that I struggled to determine how to cope. My last treatment, in mid-October, was without fanfare. I think that if I were to do it over, I would choose to make it more of a "big deal." I did celebrate with friends later on, but I think that it was a bigger transition than I let it be outwardly. I think it would have helped me ease into the "survivor role" a bit better than the way I chose to handle it at the time. Nonetheless, I stumbled into the survivor role with all of the gusto and might that I have put into most other life situations/events. I even signed up for the Susan G. Komen 5K Race for the Cure. I participated as a survivor in early October with my friend Karina. My sister, Becky, was there to cheer us on.

My thoughts on the Susan G. Komen 5K Race for the Cure: I was stunned and overwhelmed--both horribly sad and encouraged that people were participating in such numbers. I fought tears and enjoyed goosebumps during most of the event. There were thousands of people! I wore my bright fuschia shirt that said "Survivor." I HATED seeing all of the little handmade signs people wore saying they were participating "In Memory of..." The man with the two small children who walked in memory of his wife, the childrens' mother; I almost could not walk any more. Karina, my friend who walked with me, may not realize that if she was not there I would have just sat down in the road and cried. I participated "In Celebration of" ME (I wrote ME on the sign.) There were others who did the same for themselves. I had to stop looking for "In Celebration of" signs...I saw too many "In Memory of" signs. Thinking back now, I can feel the overwhelming emotions I felt that morning. Oddly, I will have to think hard about whether or not I can devote the mental and emotional energy to participate in an event like that again. I more than likely will participate again, but I know there is a toll associated with it.

November and December were very difficult months for me emotionally. I struggled hard to stop thinking about everything that had happened the year before. Not that everything I was thinking about was 'bad,' but I played into the "anniversary" thoughts and was swimming in some dark feelings I suppose I needed to work through. And now, "all fixed up," I felt I was left dealing with the aftermath (this new role) without much guidance, or any idea for that matter, on how to be a cancer survivor. Ultimately, I realized that was up to me to decide. Is that who I am or a piece of who I am? How important to me is it to have that as part of my identity? Should I do something more with this experience? Would someone please write a guide on how to act now? In fact, I'd like a guideline on that and how to treat other people who have been through such experiences. Not that I am good at following guidelines or anything, but some idea would be helpful. Frankly, I was a bit lost. I am not so sure I have completely gotten past that stage either.

Closing out 2010: I am profoundly altered: more intense and passionate about life (humanity, love, friendships, relationships in general, feeling...) I think I have learned to focus more on what is really important.

And I still analyze things far too deeply!

Why I will survive (or, how I found my breast lump)

Lots of folks, men and women, have been asking me about how I found my lump--or why, at the ripe, young age of 34 (now 35) I was having mammograms. Was breast cancer in my family, or what? Well, there is NO breast cancer in my family, no reason for me to think that I would need early testing or anything like that.

After writing this, I realized I not only tell you how I found this damn thing...but I give you a hell of a lot more emotion and background. Some of you may not want to read through...and that is fine (really, no guilt!!!) For you: I did do semi-regular self-exams (about monthly) in the shower, but I had felt nothing unusual. I felt the lump, high on my breast, to the outside, during working out. It felt like a pulled muscle--this was quickly noticed during a weight training routine. It was larger than the muscle area on the other side. I truly thought I had a pulled muscle--it felt like a knot. Then it got painful--like a knife stabbing me from the inside, so I (eventually) had it checked out. Do NOT believe people who say, "It doesn't hurt if it is cancer."

For those of you who want to read further, here is the emotional streaming...the contextual stuff that explains the thought process I went through...and why there was a 4 month delay in testing...and more...because I ramble!

In early March 2009, in the midst of a new workout routine (more weights and upper-body exercises), I felt an area of "hardness" above and to the outside of my breast area. It was where some of the muscles I was using for chest/pectoral muscle exercises were. It was just harder than it was on the other side. I really did not think much of it, as I was working out and exercising those muscles, so I just continued on my merry way. Hell, it was just a pulled muscle to me. I worked out up to 5 times a week...with cardio and weights. Occasional pulled muscles were nothing new...and this felt like a classic "knot." Nothing more, nothing less.

Later in March, something was telling me that I should get it checked. But then it started hurting a bit. And I had heard that damn (and woefully incorrect) saying that, "if it hurts, it's not cancer." Sad how many people think that is true. I kept using that as my mantra...but I kept feeling like I should get it checked anyway. Very low on the priority list. Wow...ME, my health, my well-being was LOW on my priority list!

As I was in the middle of a divorce, living with friends, flying back and forth to Texas, dealing with the emotions of having my mother being very ill, and just generally trying to keep from going completely insane, I kept putting off having it checked. Plus, it hurt, right? Oh, and my regular doctor had retired...so I had to find a new GP (and I hate that...I am uber picky with doctors).

Just after my divorce in early May, that damn spot began to hurt to the point that I could not just talk myself out of it anymore. I started hunting for a new doc...but then I was focused on my possible move back to Texas at that point. The pain felt like knives...or just one knife (hey, my boobs are smallish, multiple knives would not fit!) I would say that it felt like someone was stabbing me from the inside out...through the nipple and up through my neck. It started to wake me up at night. I started to worry...and started researching what this could be. I convinced myself it was a clogged duct, a cyst, or something, anything other thann cancer. Still needed to go to the doctor, dammit!

So, in June, I hunted down a new doc and made an appointment. I missed my first one, as my mother went back into the hospital in DFW/Grapevine. I went back in early July. Of course, my doc felt it and sent me for a mammogram. At that point, in early July, I had made the decision to move back to Texas to be near my family. I was going back and forth so much and had just lost any energy to be in Florida. All of my friends in Florida were supportive...My mom was in and out of the hospital so much, and I just felt like a ping-pong ball flying back and forth...I was totally, completely, fucking TIRED.

My mammogram was scheduled for later in July, so I made a trip out to Texas. I figured I would hang there, look for jobs and make 1 or 2 trips back to Florida (to get my stuff and get medical questions out of the way). The first trip back to Florida was supposed to be for a quick mammogram, to be told I had a cyst or a clogged duct, and I would be relieved and deal with it later. I had turned in my notice at work and had resumes out in DFW. I would move back to DFW and find a job when I got there...health insurance...well, that would have to wait.

I had my first Mammogram at 34 years of age...on Wednesday, 7/22/09. I was scheduled to be in Florida for about a week. I was told that I would have the results early the next week...or by Friday if there were any concerns. I kept telling myself it was nothing...but I have to say that I knew. I knew something was not right...but I had gone so stressed out over everything, I decided it was my MENTAL health that was not right!

On Friday, 7/24/09, my doc's office called me and told me that "further tests are needed."

I was sitting in my truck outside of Starbucks--right next to a Panera (unusual, right?) when they told me...I threw up. Luckily, I had time to open my truck door. Hey...I am not a puker...unless I am completely inebriated or physically ill--I am just not a mental-puker. I guess the stress, the year I had so far, my emotions, the reality, the fear...well, it was one hell of a puke. I cried and puked for about 8 hours that day. Much of it sitting in that parking lot. Those poor folks at Panera...just trying to get a bite to eat. Sucked for them!

So, I went back in on Monday, 7/27/09 for a targeted Mammogram and an ultrasound. A small mass was clear on the ultrasound. The technician brought in the Radiologist, an M.D. He said to me, "I am not 100% sure that is cancer, but it really doesn't look good." I still can picture that small black spot on the ultrasound...it was as if I had seen "my enemy." And I had.

Not-so-good news from the surgeon

Well, I am very sad to say that the surgeon dropped another bomb on me at the follow-up appointment. He was unable to get "clear margins" with the large amount of tissue he cut out of me last week. He ended up cutting out 2 sections and all were full of cancer to the margins (he cut out up to 9 cm in some areas). If he cuts out any more, I won't have much of anything left...and he will not be able to guarantee he gets it all anyway. Oh, and it is all high-grade cancer cells (meaning they are more aggressive and are least like normal breast cells).

I think the only "good" news from the Pathology Report was that only 3 of the 20 Lymph Nodes removed showed signs of cancer cells...

Unfortunately, I am going to have to have a simple mastectomy. And because I have absolutely NO FAITH in any of my imaging studies done up until now (Ultrasound and MRI)--mostly because the MRI missed that most of my left breast tissue is full of early cancer; I have opted to have BOTH of my breasts removed. I suppose I just have a "gut feeling" that they are going to find cancer in my right breast too...something that is so early that it isn't showing up, and that by the time it does show up it will be so pervasive...well, I am sure you get the gist.

I have to say that this scares me for other people...the cells that are present throughout my left breast are aggressive, ugly little critters that somehow evaded detection by our current technology. I am certainly GLAD that I know they are there...but the only way we knew this was by cutting out chunks of me and looking under a microscope...what if there is other stuff elsewhere that will evade detection for some time? Scary shit!!!
I certainly am very unhappy about having to do the bilateral mastectomy. Actually, it breaks my heart to do it, but I know it is the right thing for me.

Surgeon's guess (Staging without PET/Bone Scan info): Stage IIIa Invasive Ductal Carcinoma, High Grade, HER2+

Next steps:

Having Moffitt Cancer Center do a 2nd opinion on the Pathology Slides (just to be double-sure...I don't doubt the pathology report, I just want a second set of "eyes.") My surgeon's office is already making sure this gets done prior to next Wednesday.

Double Mastectomy with Sentinel Lymph Node biopsy on the Right Breast is scheduled for Wednesday at 7:30 AM. Doing this at Tampa General Hospital. This will require an overnight hospital stay...my Mom is coming in for this one.

PET Scan and Bone Scan will be scheduled as soon as I am a bit healed from the Mastectomy. Although I am scared shitless it will miss something important, it is the best thing we have at this point to make sure I am being fully treated for anything I may have elsewhere. This will give us the "final" info (for now) on the Stage of cancer.

Chemo and Radiation: Chemo will begin after some healing from mastectomy. Possibly 3 months of high density traditional drugs with 1 year of the Herceptin (or similar) treatment for HER2+ status. Radiation: 6 weeks of daily after the Chemo.

My sis, Becky, just left to go back to Dallas. I will miss having her here! My mom is coming in Tuesday. I am heading in to work a bit today, Monday and Tuesday.