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!

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

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