My Drains are coming out!!!

Yay! My drains are coming out tomorrow! They are each draining less than 30 ml per 24-hour period, so it is time for them to remove the Jackson Pratt Drains. I've had them for just over 2 weeks now...hell, I've had one on the left for 4 weeks so far. So, at 1PM, they are coming out. I will be going over to Tampa to see Dr. Cox, who will be removing them for me.

Aaah...no more drain lines or bulbs to try and hide through creative wardrobing. No more danglies. Woo hoo!

Medical Oncologist Appointment...PET/Bone Scan info...chemo schedule...

This morning, I had my first appointment with Dr. David D. Wright with Gulfcoast Oncology Associates (http://www.gulfcoastoncology.com/) over in Tampa. The office is right next to St. Joseph's Hospital and is not too far from home to make it inconvenient.

I have to say I was horribly anxious last night and before the appointment. I had trouble sleeping...just going over the questions again and again in my head. I had typed them up this time...and added more questions in pen as they came to me.

My friend and fellow Breast Cancer Survivor, Cindy, joined me for the meeting with the doc...she also brought with her a book, Dr. Susan Love's Breast Book, and a gift bag with a Breast Cancer Awareness TY Beanie Baby...a cute keychain and a card. I really appreciated her being there...and I love my little gifts!

Dr. Wright is young...like Dr. Cox, and he is very energetic, smiley and kind. He made me comfortable right away, answered all of my questions, and just generally was pleasant. Since I don't really enjoy meeting new doctors...it was nice to again like someone right away (similar to Dr. Cox). I feel like he took a lot of time with me to go over treatment options and the questions I had or ones that came up. Cindy was beneficial to catch some additional questions that I had missed. Thanks Cindy!

Okay, so next week, I will be having the PET and Bone Scan. Dr. Wright's office will set this up and call me to tell me where and when this will occur. They will attempt to get this scheduled somewhere closer to where I live for my convenience. Dr. Wright will discuss with me the results of the tests when they are available.

The "Standard Protocol" for my type of Breast Cancer is TCH, Toxotere, Carboplatin and Herceptin. I will be receiving the three drugs via my chemo port (on the upper left side of my chest) every 3 weeks for 6 total sessions. After that, the Herceptin will continue to be administered in the same manner, every 3 weeks for an additional 11 doses (17 doses total of Herceptin). Radiation will be with the Radiation Oncologist after the first 6 doses of chemo.

Chemotherapy will begin in 2 weeks, on October 15th. This will give me additional time to recover from the bilateral mastectomy that was just 2 weeks ago...thank goodness! And it will provide some time for the PET/Bone Scan to be completed with results provided to the doc. I will be receiving chemo at the office I was at today, and I toured the area to make sure I would feel comfortable there. It was fine...not dissimilar to the setup my mom has for her dialysis treatments. Luckily, I will only have to be there for 4-4.5 hours every 3 weeks. Heck, mom gets dialysis 3X a week...I think I can handle hanging out there with no problem!

I am having the chemo administered on Thursday afternoons, then I can get a shot on Friday (anti-nausea and other meds if necessary) and recover over the weekend. This way it will not interfere too much with work. The shot may include steroids (although we are going to be very careful with this) Neulasta and/or Procrit. Decadron was also mentioned. I have had interesting responses in the past to some steroid medications, so the doc will be watching this closely. I distinctly remember the last time someone gave me Prednisone...I experienced insomnia for 3 days...AND acute psychosis. Fun stuff! Hell, I managed the psychosis okay...nothing like a break from reality. No one at the UNT Criminal Justice Graduate Studies Department seemed to mind so much...maybe I didn't seem that different than my normal crazy self? Anyway, I told the doc he needed to watch steroid issues with me closely...and he indicated he would be available via phone if needed.

Ok...17 to 18 days after chemo, I will lose my hair. Yes, it will grow back, but ugh. The doc gave me a script for a "hair prosthesis!" That would be insurance jargon for a freakin' wig!!! And that's only the one for my insurance...apparently, "scalp prosthetic" is also used. That one seems wrong to me...my scalp won't fall off...although I didn't ask that question specifically (joking). Well...thank goodness Halloween is coming up...should be no shortage of goofy wigs I can don--for shits and giggles. I will probably get a good one though...we'll see. I have always been so hot natured...lately I have been feeling the effects of cold more...I may just need one. Who knows. I always did like hats...and my sis is a rad knitter. Note to self: find awesome cotton hats...allergic to wool, so wool is out. Maybe Lindsey Lohan (sp?) will date someone (else) who likes good hats this time. Much easier when I can buy hats at Target.

I also have this lidocaine cream that I have to rub on my chemo port prior to my sessions...my mom does this to her wrist before her dialysis...I will get with her for tips on how to best use this stuff. Crazy, the port is just below my skin, and they just go right in with the needle/chemo drugs. EEK. I'll probably need anti-nausea meds just to handle that shit to be honest!

What else? Oh, blood will be checked at each session, prior to starting...and I meet with the doc prior to each session. AND, the doc will be doing the genetic BRCA testing. It is covered by my insurance because I have been diagnosed with Breast Cancer.

OH...and if you are wondering how I will feel after chemo: Doc says I will feel like I have a mild hangover the day after chemo...along with a couple of days after that. He also indicated that nausea is an issue...although I kind of figured this...and when the nurse gave me a script for 3 different prescription medications for nausea, I could tell they were serious!!! Apparently, they will also be giving me anti-nausea meds with the chemo meds as well. I am thinking that someone may have experienced nausea in the past...maybe they were just covering their bases? ;-)

I think that is all for now...although my brain is mush from today. Heck, I had 2 hardcore naps after the appointment. Even with that damn Starbucks fix! Note to self: buy Starbucks store. Give free coffee to everyone on 9/11.

With love,
The boobless one in West Central Florida...the one searching the internet for a hair prosthesis...really? OH shit could I have fun with some wigs...
~Tory :-)

P.S. Doc says I look really strong and vibrant...and that I will be just fine. I know I will. I just like hearing a younger man tell me I look strong and vibrant!

Fiber-Padded Fake-Boob Soup for the Soul...

Well, let's see where we are at tonight...I am just shy of one week since my surgery...I had a double "simple" mastectomy at Tampa General Hospital last Wednesday morning (yes, I had both my boobies lobbed off.) During the surgery, the doc found no sentinel nodes in the right side that showed signs of cancer (so I still have lymph nodes on the right), and the right breast appeared to be free from cancer cells (yay!) The left breast was full of cancer cells (boo!)...so the doc took out a lot of tissue to make sure he got as much as possible. I had them remove both breasts because, when told that the left-side lumpectomy was unsuccessful and a mastectomy was needed, I figured that if you are going to take one, you are taking both. Hell, that way I wouldn't be lopsided (or any more off than I already am), nor would I be scared shitless that they had somehow missed something in the right breast (etc., etc.)

I have to say that you can never really be prepared for how a mastectomy looks. I saw some pictures on the internet and all...but when it is YOU, it is certainly different. You could also not be prepared for the sheer amount of tissue and flesh removed. I really did not expect to be, well...concave? The doc says that will "fill in" a bit over time, as my body heals from the surgery. And the wounds...well, they are ugly--they are like big gashes, actually. He used surgical glue, so I have no stitches or anything...but wow. If I try to make a "joke" of it...the best one I can come up with is that with my two gashes and my bellybutton, it looks like some stuffed animal sleeping? I could probably do a video on YouTube or something...but I am just not that irrational...really, I am not.

Emotionally, I am dealing. I think. I did have some trouble yesterday...my mom and dad were here and they wanted me to join them for a nice dinner out. I tried to get ready...I was dressed and all, but I just could not get comfortable in my clothes...I do still have two drains coming out of my chest, and they have bulbs at the end of them that just do not "store" well--no matter how you try to hide them or whatever. You can try to smash the bulbs and tubes into your skin as much as possible, but that is just horribly uncomfortable...sweaty, pokey, weirdness. Also, fiber "pads" that fit into my "mastectomy camisole" are truly goofy. I will have to find something that works better than that damn camisole...and those fake fiber-paddy boobies were just not working for me. Must try and figure something out before I will get truly comfortable with that business. Hell, maybe I will try "flat" too, but not yet...because (as I said), I am beyond flat at this point!!! So, last night, I ended up deciding not to go out to dinner--they went out together and brought me back food. I just was not ready...and I am okay with that at this point. We're gonna take this one slow and easy...on purpose.

Pain-wise...I get better each day. Really, I have more pain from the 10 feet of drain line they have up in me (slight exaggeration, I know...but hell, that's what it looks and feels like). Yes, I can feel and see the damn drain lines in each former breast (if someone has a better name for this "area" or lack of things...let me know, as I am at a total loss here.) Funny, my sis said Jackson-Pratt drains are kind of like reverse soaker-hoses...hmmm. The internal armpit drains are the worst, as they seem to sit right on top of a muscle I apparently use quite often--wish I didn't, but I do. I am still "draining" quite a bit, so I know that I will be keeping these oddities for a couple of weeks...or more. I wonder if there is any good way to dress them up a bit...if I had "fun" with them I might look at them differently? If I decorated them, could I wear them outside of my clothes and not upset folks? Could I put weights in them and use them in my next street fight?

Oh, the pain in my right upper arm from the lumpectomy and axillary node dissection I had a couple of weeks ago is still there and prominent. Overall, there has been some pain...mostly muscular and drain discomfort; however, percoset has been helpful in keeping the pain quite manageable--oh yeah. I am slowing down on my percoset consumption...and find that the more rest I get (sleep at night and naps during the day, to be specific) the more manageable it is (I honestly think your mind "copes" with the pain better with more real sleep.)

Anyway...aside from discomfort, funky drains hanging out from me (and snaked up in me), needing lots of extra sleep, and wardrobe issues...I think the LOOK of the result is most problemmatic. Surgery can be emotional to begin with...but this one packs an added punch. We'll see how I handle it over time...I know that I will likely subject myself to the further surgeries of reconstruction...there are multiple surgeries needed for this (most often 2, but sometimes more). I already have folks suggesting particular reconstructive plastic surgeons. Time will tell :-)

So what is next?
I have my follow-up appointment to my surgery on Thursday at 10:30 AM. My dad will be going with me. During that, we will get the final pathology report: find out if the margins on the mastectomy were clear...hopefully there is no infiltration into the chest wall; we will know for sure if there were any cancer cells in the right breast or the sentinel nodes that were removed; and we should know the final size of the cancer that was in my left breast. As far as we knew from the last surgery, we were looking at 4 to 5 centimeters (which was a hell of a lot larger than what was indicated on the mammo, the ultrasound and the MRI). I am hoping that this post-surgical appointment will be much more positive and uplifting compared to the last one :-) I really need some good news at this point (and I don't want to keep holding on to the initial results of "no cancer in the right boob you just had cut off!!!")
I have to make appointments to get the PET scan and Bone Scan (Bone Scan done as part of the PET scan). This will help us determine if there is any cancer in the rest of my body. My feeling is that there is not...however, I need to get used to the PET scans...this will likely be something I do annually or more often if indicated, for many many moons!
I also need appointments with the Radiological Oncologist and the Medical Oncologist. Pending the results of the PET, I should have a very good idea of when they want chemo to begin...along with what medications they would want to use during chemo. I will also have an idea of when radiation should begin. On chemo and radiation: I still have some options with these...I have some decisions to make about what I want or do not want. I have the chemo port...and I suspect I will be receiving chemo; however, my final decision on that has not been made...I have been reading a lot about Herceptin recently, as my cancer is HER2 Positive. Clinical studies of Herceptin have shown a 52% reduction in recurrence of HER2 positive invasive breast cancers...that's pretty darn good if you ask me. I certainly don't want to keep dealing with this shit over and over again!

That's all for now!