My First Gym Visit Since August...

Well, yesterday evening I got a "wild hair up my ass" and thought I might like to go workout at the gym! Now, I have not been to my local gym since late August--just before my first surgery in September. Three months...and I had been going so frequently that it had become such a routine (even a comfort and release!)

Getting ready: It took me a while to get dressed to go. Having both of "the girls" removed presents with it some unique wardrobe issues regardless; however, most of my gym clothing tops had morphed into tighter-fitting-but-still-functional jog bras and tighter tank tops. Wearing something like that now just makes me look odd. Here's the picture: jog bra + tank, a beanie on my head, my makeup was still on from work, and I had on a pair of yoga pants with my running shoes. With absolutely no boobies, I looked downright amorphous--excluding my rounded hips and lack of protrusion in my groin area. So, I shoved a couple of silicone "breastforms" into my jog bra (the slots for the pads work well for this) and found a looser-fitting tank. If I keep up this gym thing, I will have to get some looser tops to wear over these jog bras/forms. Eventually, I felt sorta "female-looking" and I took off to the gym.

My perceptions at the gym: I was very self-consious at first...it only waned a bit during the hour I was there. I would really like not to have to wear a beanie on my head while working out; however, I have such little hair on my head, and I feel like I would have been more self-consious without it. Most of the folks at my gym are there to work out...not to get laid, so folks really do pay more attention to what they are doing (as opposed to the people around them.) I never felt self-consious there before, so I will have to work on my own perceptions of my SELF to handle it better next time. Oh, and looser tops will help too--I would really prefer to not have to worry about whether my fake titties are migrating during exercise!  So: next time, keep the beanie (need a good all-cotton one though), and wear a bigger shirt/tank. This is easy...so let's go with it!

My workout: I worked out for about an hour. In the past, I would do from 1 hour to 1.5 hours, depending on my energy level. I did move much more slowly, so what I packed into the hour last night was much less than I had done in the past. Slowly but surely. I did the regular treadmill for about 15 minutes...my shins were yelling at me a bit, so I had to stop a couple of times to stretch them out (I used to have to do that--must remember to loosen those up a bit before I start!!!) I really could not get my heartrate up into the "Cardio" range, but I really didn't stress about it. My heart deserves a break after everything I have been through this year!!! I completed just shy of a mile on the mill--with a tiny incline...nice.
After the treadmill, I did some leg-work. I was able to do the same weights I had worked myself up to in August; however, I had to do fewer reps and sets. Really, I was able to do about 2/3 of what I could do before--I was pleasantly surprised by this...and quite happy about it. I only did a few things with my arms...wanting to take it easy on my left arm still, as I have a lot of numbness in my upper left arm yet. Really, my arms did not mind, and the left arm seemed to really "enjoy" the stretching of it all.

While at the gym, one of the trainers who knew I was about to undergo treatment came up and chatted with me. She said I looked "great" and that she wouldn't have known I was in the middle of chemo. She had done the 3-Day Komen Walk during October and said that she had wondered about me. She said to keep it up and she wishes me well. She and I will probably work together on some upper body stuff soon--I think I want some help figuring out how to deal with my chest muscles post-surgery. My docs have not been very helpful with suggestions on this...so we will see.

Today I am feeling pretty good! I feel a little back muscle discomfort, but otherwise I am just fine! I think I will hunt down some looser shirts to wear and head back this weekend. We shall see!

~Tory

Post Surgical Followup Appointment-Finally, some Good News!

So, yesterday morning I was incredibly nervous about my followup appointment with my Surgical Oncologist. I also had to find something appropriate to wear "out and about" that hid my damn drain lines and bulbs that are hanging out of my chest. I basically had to imagine that I was wearing two side arms...like an overzealous detective...but it worked...and it made me laugh! I wore a tank top with a gauzy flowy, oversized jacket thingy that hid my side arms...(the lines/bulbs/and my chest.)

I opted to drive over to Tampa for the appointment, and it was my first time to drive since the surgery on 9/16/09. My dad was actually the one who offered to let me drive...and for those of you who have been in a vehicle with my dad behind the wheel, Tory on Percoset is a better driver than dad in his best possible shape (sorry Dad, love you!) Anyway, driving was a bit  (okay, very) tiring and it made me sore. Made it over to the appointment just a few minutes late. I also drove us home...stopping at Starbucks on the way (gasp!) We also had to stop in at the drugstore, as I had split some of the incision points (yeoch...not too badly tho)...and I needed gauze, tape, antibiotic ointment, and Vitamin E Oil (thanks, Mel for the suggestion on the Vit E--works like a charm!) Yeah, I was incredibly tired after all of this, and I had one hell of a nap to "celebrate." Funny how you just crash out after a sort of "anxiety release." <--insert lots of jokes about men falling asleep after sex.

During the appointment, Doctor Cox, my Surgical Oncologist, was his usual cheerful self, and we read through the older-style Tampa General Hospital Pathology Report (the Moffitt and UCH reports were made using some newer software and were much easier to read and decipher) during the visit. I had my usual list of questions that we went through...

Left Breast: completely removed; additionally, all cancer was completely removed with good, clear margins; ample margin between cancer and chest wall; ample margin between cancer and skin surface; the final measurement of the cancer is about 4 cm...although it was so abnormally shaped...and much of the actual cancer was happening on a microscopic level, it had not formed into an actual "mass" per se. The rest of my left breast was full of fybrocystic breast disease--nothing too abnormal.

Doc said that I heal "very well" and he had no suggestions for me to follow/no specific change in anything. I asked him this as he had just performed the left breast lumpectomy just 2 weeks prior...and he would have been able to see how well/not I was healing from it.

Right Breast: completely removed. No cancerous cells found in breast tissue or the sentinel lymph nodes that were removed; however, there were numerous indications of some early pre-cancerous activity. The right breast was also full of fybrocystic breast disease (again, this is not too abnormal, lots of folks have that--surprised I felt no pain from it!) Essentially, I would probably have developed breast cancer in the right breast sometime in the near future. I feel very strongly that I made the correct decision in having the double mastectomy. Hell, it is a shock to look at the results...but at least I am here and able to look in the mirror at this odd breastless-being I have become ;-)

As you know, I have two drains hanging out of my chest. Unfortunately, the drains could not be removed during the appointment, as I am still draining more than the "less than 30 ml" requirement for removal. You could tell the doc really wanted to help me out by taking them out, but I really did not expect them to come out so soon. Besides, I find that they are a really handy-dandy place to keep the gun powder for my musket.

I received the Pathology report from Moffitt as well...they did some further testing and did the staging unlike the first surgical pathology report...pT2, pN1a, pMX with venous/lymphatic invasion present, extensive.

I asked the doc if the Moffitt report provided him with additional information he felt would be useful to him...as I could request the Tampa General Pathology slides be sent over there too. Dr. Cox did not feel like the additional information (other than what had been provided) would be beneficial at this point. If the Medical or Radiation Oncologist want the info, I will have the second review done by Moffitt.

Also, the Stage is at II instead of IIIa...this makes me feel a hell of a lot better. Cancer staging says a LOT about ultimate prognosis (okay, chances of death within 5 years), so the lower the number the better, statistically speaking. Now, I can say that I have always been an outlier on, well, everything, so I will just have to continue using that to my advantage. And right now, I see no advantageousness in my own death ;-)

Dr. Cox indicated that he would assist me in any way I needed to ensure my care was properly coordinated. He asked that I call him with any problems or issues I may be having.
I told him that I felt like he a lot of faith in his recommendations of the Medical/Radiation Oncologists...so I asked him what exactly made him recommend them. He indicated that he knew both of the docs and that the three of them speak regularly, throughout the week, and that they were all "friends." I told him that I would go with them as long as the three of them coordinated my treatment and worked with ME as a team. There are too many other options out there for me to feel uncomfortable with a doctor or the way a group of people work together for me to put something so serious as my own cancer treatment in the hands of people I cannot stand to work with!

Honestly, this is too emotional of a disease...and I have to be the head-honcho in control of my care. Some folks might not want that...hell, I have to have it...that's just who I am.


Next steps:
I need to call the Medical Oncologist to set up an appointment (this was done today, and my appointment is 9/30/09 at 9:15 AM).
The Medical Oncologist will coordinate the PET/Bone Scan, the Genetic Testing, and will begin to work with me on chemotherapy plans. It is possible that by Wednesday, I will know exactly when chemo will start. I should know most of the medications they plan to use...so I can research them prior to starting. I do know that they will be hitting me pretty "hard" with chemo...as I am young, I had an aggressive "grade" of cancer, and the fact that the cancer was HER2+ (also aggressive). I fully expect they will be recommending "Double Density" chemo....along with Herceptin. This would mean I receive the traditional chemo in heavier doses, every other week for just over 3 months. Additionally, Herceptin would be given weekly for about a year.
Since they will find NO OTHER cancer dammit on the PET/Bone Scan (positive thoughts!), this should be the worst part of the treatment...and it will be over...then Radiation will begin for about 6 weeks.

I also need to call back the Radiation Oncologist to determine if I need to see them now or sometime after chemo starts.

Reconstruction: I can begin this journey once chemo and radiation are completed--about 6 months out. I have tons of folks giving me recommendations on reconstructive plastic surgeons...Dr. Cox has some recommendations as well. I will just (mentally) have to look at this later, as I am kind of stuck with the indentions I have now...that is what I will call them instead of "former breasts..." how's about "the indentions formerly known as breasts?" I have had the pleasure of looking at tons of photos online of reconstructive surgery before and after pics. I should warn you...if you choose to look at these for shits and giggles, they are NOT for the faint of heart. Wow.

Returning to work: I should be able to start back to work on Monday...slowly, with some work from home (remote computer access rocks!)...up to 4 hours a day, 2 hours at a time. Limited driving at this point. I will slowly get back up to a normal work schedule over a few weeks. This is good...I am ready to go back (slowly...I am still way too tired throughout the day to go full on!)

Alrighty then...I think that is all for now...

With love and affection, and from the boobless one in West-Central Florida,
Tory

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!

Surgery: Redux Duplex

For those of you who are interested and keeping tabs on what is going on with my health...
I am having a double simple mastectomy tomorrow morning, 9/16/09, at Tampa General Hospital. My surgeon will also be doing the Sentinel Node Biopsy on the right breast (as he did with the left) to check for cancer. If there is any sign of cancer in the Sentinel Nodes, they will do an axillary node dissection on the right. While there is no indication that there is cancer in my right breast, I feel as if I will be more comfortable having both removed.

Just a couple of weeks ago, I had a lumpectomy on the left breast...along with an axillary node dissection (there were cancer cells in 2 of the 4 sentinel nodes...and the pathology report showed 1 additional lymph node with cancer cells). So, 3 of 20 left side lymph nodes had cancer cells. My doc was unable to get "clear margins" on what he removed so far, and I don't have much breast tissue left in my left breast, my only option really was to have a mastectomy of the left breast.

When I discussed this with my doc, I felt like we should do a double mastectomy. This was based on a number of factors; namely, the MRI didn't show the amount of cancer in my left breast that was really there...so what IF there is some in the right breast not showing up; if you remove one breast and reconstruct it, it will never "match" the other one; I would be lopsided (lol); I would have an increased chance of recurrence; and so on.

For me, better to have both off...know for sure if the right breast has any cancer or not...get the appropriate treatment...get Cancer-Free...and get a new set of boobs later.
Well, I can't say that I am happy about having to do this...in fact, I am absolutely pissed off. It's a shitty hand to have been dealt, but that's why I like "draw" instead of "stud." Don't like a couple of cards? Throw em back and draw 2 new ones. And that's just what I am gonna do!
Anyway, just a hurdle on the road to becoming Cancer-Free...wish me luck...send me good positive thoughts...pray...drum...yodel...do whatever you do to help me get well! I appreciate it all.

My sister, Becky (who is absolutely the most awesome person) will be logging into my account again tomorrow to post on how I am doing. I never did claim that I am not neurotic.

Have a good one guys...I'll say goodbye to "the girls" for you!

~Tory

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.