Tuesday, February 28, 2012

Suddenly, I Can See a Light

Me and My Mom who takes such good care of me!
"All set, let's jet!"  That was the last thing my new Oncologist, Dr. Anna Maria Storniolo said to me as I left her office today.  What a far cry from my former Oncologist who was...ahem...inappropriate and come to find out, addicted to meth!  The Indiana University Simon Cancer Center is quite a facility. My Mom and I were laughing as we watched all the hot, young, new "white-coats" walk by...it was like Seattle Grace!  Before I saw AMS (these are Dr. Storniolo's initials....same as mine....I'm weird about coincidences), I saw Dr. Satpute, who was on a Fellowship w/AMS and he went over my last year's worth of records to get everything straight.  I knew it would be confusing to get 90 pages of my cancer history over a fax so I got him up to speed.  He went over everything with me, but he stated that I could ask him questions, and ask her the same questions again, whatever made me comfortable.  I thought this was a great opportunity to get a second opinion in one appointment.  Interestingly enough, he did have different opinions about a couple of things (Lymphedema risk, and OncoType DX testing).  Because of the Stage 1 scenario, he definitely recommended a test called OncoType DX.  This test assesses the likelihood of recurrence in early-stage cancer with E+ tumor.  The test analyzes a panel of 21 genes within a tumor to determine the likelihood of recurrence and whether there would be a benefit to chemotherapy. I asked him additional questions about this test and some other questions too.  He was patient, kind, and explained things very well.

After Dr. Satpute finished up, AMS came in- WOW- she was such an engaging, enthusiastic, and informative doctor. First and foremost, she told me that she would not have done anything differently on how I decided to treat my cancer or how my Doctors approached my cancer. She told me that biologically, my scenario couldn't be better, as far as my tumor goes.  It was highly Estrogen and Progesterone receptive, HER2 negative, and was very low grade.  So low grade, in fact, that she said that it has probably been slow-growing for 10-12 years!  I asked her about the discrepancy in the HER2 tests and she said that they fight with pathologists all the time to just do away with the stain test (IHC) and just do the FISH test to determine the HER2 status.  It is the most accurate and she assured me that the tumor was indeed HER2 negative and to be sure of that.  Because of the early stage and great pathology, she recommended NO chemo and to stay on the Tamoxifen for 5 years.  Having gone through the whole OncoType DX testing stuff with the other Dr., I inquired about doing that testing and she said if I wanted "that number to hang my hat on" that I should do it for peace of mind, but that she didn't foresee an outcome that would mean I'd need additional treatment.  Being the worry-wart and nervous-nelly that I am, I told her to order the test and that I NEEDED TO KNOW FOR SURE!  Another test, more waiting, blah blah blah, I'm used to it all by now. She was truly fascinated by my case and told me that I had "old lady" cancer in a young person's body (which is a good thing). Having had Dr. Y tell me chemo was most likely in my future, all of my other questions for her pertained to just that. I'm 95% out of the woods on chemo.  Fingers/toes crossed.  I follow up with her in 3 weeks.

Another baffling issue with all of this.....the differing opinions about Lymphedema.  My God, can we get a consensus on this???  I've asked every one of my doctors and everyone has different opinions about whether I'm really at risk or not.  I've only had sentinel nodes removed, but even that carries risks.  All I can say is that I'm a firm believer that I have to be my own advocate for this and go with my gut.  What is the big effin' deal about getting my blood pressure taken on my leg if it means eliminating the risk at all?  So although I might go as far as doing just that, getting my BP taken from my leg, I may forgo the compression arm sleeves when I fly.

(KOURTNEY UPDATE): Mom and I cruised north to Fort Wayne in time for my "weekly" plastic surgeon appointment with Dr. S (suddenly I have 3 Dr. S's!!).  Having issues with my incision with my last mastectomy, I really tried to be careful this time and not take off my steri-strips until they just fell off in the shower.  Well, they did over the weekend and when I held the mirror up to take a looksy I said, "oh, fu**."  Only I didn't say fudge.  Lots of blistery spots that I remembered from the last go-around, only this time it looked worse.  I knew there was no fill-in in my future for probably the next 2 weeks and of course, I was correct (Dr. S is so predictable).  He said that it would be ok, and that it isn't infected so that's good.  I said to him, "So, can I run yet?"  He said, "Yes, but take it easy!"  I said, "I'm going to Vancouver next week, can I snowboard? (trying to keep a straight face)"  He doubled over laughing.  :(  BOOOO!  I know I was pressing my luck, but I had to ask.   Nothing spells disaster like an out-of-shape former bi-lateral breast cancer patient rupturing an implant in a foreign country.  Ok, I guess I'll concede that one.

Next up....my first work trip since surgery.  Vancouver next week.  I can't wait to see my industry friends and personally hug them for all of their well-wishes and cards from afar.  Going through cancer and everything that goes with it, has sure given me a new perspective on things. What a blessing!

As always, feel free to email me at amymariesmith93@gmail.com with anything, really.  If you have an opinion/experience with Lymphedema, I'd love to hear it.  If you want to share your opinion about the Keystone Pipeline, that's fine too :)  I just love a full mailbox.

Tuesday, February 14, 2012

Rollercoaster Days...Enjoying Today's Ride!

Someone once told me that the worst part about breast cancer is the constant rollercoaster ride of news and emotions.  I can completely relate to that statement.   It's only 10:30am, but I've gone from warning my friend Kathleen about my anticipated meltdown at the plastic surgeon's office (I could even hear the trembling in my own voice on the way down), to having the best appointment EVER!  Kathleen picked me up early, we had snow overnight, and Mom stayed back to take the kids to school because they had a school delay.  I've been to Dr. S's office 19 times now, and I was prepared to go postal if he refused to take my drain out.  He is very conservative and does things on his own timeline....although I appreciate this in an intellectual way, I still get angry that he won't do what I want.  Paula came in (his nurse, whom I love), and brought in with her the familiar-looking syringe and bags of saline.  Is it possible?  Really POSSIBLE that he might, not only take out my drain, but do a saline fill-in into my expander too?  No way.  Having problems with my incision after my surgery in July, they teased me with the saline at 5 appointments until he finally started the fill-ins back in August.  Enter Dr. S.  He yanked the drain out (yes, that's how it's done- count to 3 and think about the 2-hour shower you are about to take when you get home).  Then he said he wants to get going on adding fluid to the expander.  {Who are you, and what did you do with Dr. Shambaugh?}  Feeling lucky, I decided to press my luck even further and told him instead of his "maximum" 50ccs that he normally adds, to go ahead and put in 100cc's...I can take the pain!  But then he went back to conservative Dr. S and said 'no.'  He wasn't privy to my pathology so I filled him in on that and asked about where reconstruction fits in to the timeline in relation to chemo.  He said that typically he proceeds with the fill-ins as usual, unless the patient isn't up for it, or their levels are low- it's very subjective.  Since I currently have one voluptuous C-cup and one flat spot, this news was glorious to me.  I can deal with being a little bit uneven for the time being, but now, at least aesthetically, I'll look ok in clothes. This all sounds so vain, I realize, but it's a silver lining that I wasn't even expecting, for sure.

At this point, I told Kathleen that she had to come to all of my appointments...she's good luck!

We walked a short jaunt over to Dr. Yahanda's office, because I needed to sign off on my records to have them sent to IU Med Center (hold that thought....).  I thought while I was there, I'd see if my pathology results were back on my HER2 status.  My original pathology report stated that my HER2 status was "borderline" and when that happens, it must be re-tested using another test called FISH.  Dr. Y's nurse said that the pathology report was back, but that he was out this week and hasn't reviewed it.  The Offensive Line of the Giants couldn't have kept me from leaving that office without my results!  Even if it looked like Greek, I was going to take that report and I'd find someone who could read it. Well, it wasn't all that difficult to decipher, and both Kathleen and I both read it and came to the same conclusion....that my cancer was HER2 NEGATIVE.  The ratio was well below the normal range, almost making me wonder why there was a question at all?  Something to discuss with my new Oncologist....which brings me to more news.

I made the decision to take my case down to Indiana University Simon Cancer Center in Indianapolis.  They are one of the best cancer centers in the US.  Lance Armstrong praised IU for the care he received there when he battled cancer. Yes, the 2 1/2 hour drive to Indy will be a pain, but I know in the end, that it'll be worth it to have cutting edge care and who knows, maybe even part of a clinical trial which would be a great way to pay it forward in a small way.  My appointment is Feb. 28.

In other news, I'm back to work tomorrow.  Pain-wise, I feel ok, but I'm not sleeping well at all and this is my only concern about returning to work.  Not being able to sleep in any other position but flat on my back makes my back hurt by 3am, and usually I'm up for the duration after that. Once I'm completely healed, I'm sure with the help of Brad Pitt (my body pillow purchased back in 1998 when I was prego with Matt), I'll be able to sleep much more comfortably.

Please email me with comments, suggestions, stories, encouragement, and love at amymariesmith93@gmail.com.

Wednesday, February 8, 2012

Good News....But Battle is Not Over

 Dr. Yahanda gave me the results of my pathology today.   

T1N0M0

This means:
(T) 1, meaning (t)umor, size-wise, is Stage 1 *
(N) 0, meaning no spreading into my lymph (n)odes
(M) 0, meaning no (m)etastasis

*I asterisk'd this one, because the exact size of my tumor is unknown because they still need to "piece" together the part of the tumor my plastic surgeon took out when he came across it during reconstruction with the tumor taken out during my mastectomy.  The pathology report states that the size of the tumor taken out during my mastectomy was 1.8 cm in greatest dimension.

The tumor was highly progesterone and estrogen receptive (a good thing).

All margins were clean of cancer cells.

Then he told me about my HER2 status. 

HER2-positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. In about 1 of every 5 breast cancers, the cancer cells make an excess of HER2 due to a gene mutation. This gene mutation and the elevated levels of HER2 that it causes can occur in many types of cancer.  HER2-positive breast cancers tend to be more aggressive than other types of breast cancer. They're also less responsive to hormone treatment. However, treatments that specifically target HER2 are very effective, and have become available in the last few years.

My pathology report stated that the HER2 tested 2+ by the IHC test (ImmunoHistoChemistry) which is performed in initial pathology.  2+ means borderline.  Therefore, it must be re-tested using FISH (Flourescence In Situ Hybridization) and this test will verify if indeed my tumor is HER2 positive or negative.
If the HER2 status is positive, then chemo will undoubtedly be in my future, along with treatment involving the drug Herceptin (thank GOD for this drug, but GEEEZ, side-effects look horrible).

At this point in my appointment, I thought, well, maybe there is a chance that this new test will reveal the tumor is HER2 negative, in which case, would make it the best possible outcome of my pathology. 

And that is still possible. However, my heart sank when Dr. Y told me that even if it is HER2 negative, given my younger age and size of the tumor, chemo is usually always recommended as the standard course of treatment.

All of this will be evaluated by my oncologist.  WAIT!  That's right, I don't haaaaave an oncologist, because mine was busted for meth.  And guess what?  I found out the one I finally decided on isn't taking new patients.  And I can't get in to see my next choice of oncologist until March 15!  I'm going to do some more oncologist research.  I guess if I have to travel a little further for treatment, but get in faster, then I may do that, but that just adds to the burden of more time off work, away from kids, etc.

Cancer is fucking bullshit- there I said it.  I'm so over it already.  It's gone from my body, but it's still completely disrupting my life.

As far as my recovery, I am still experiencing some pain, but I'm slowly weaning off my pain meds. Every day gets a little better.  I saw Dr. S (plastic surgeon) and my incision looks good (well, it looks good to him- to me, it looks frankensteinish).  Because this incision is so close to the one he made during reconstruction, we need to closely monitor the blood flow between these two incisions.  He only took out one drain tube, which puts me no closer to the shower I desperately need!  I'm sure that once my incision is healed, and my drain is out, all of my visits to Dr. S will come to a halt for a while until my treatment is well over.

My cancer has not spread!  I am extremely lucky that this was all caught, maybe not as early as it should have been, but early nonetheless.  As much as I dread the thought of chemotherapy, if that is what it takes to make sure cancer stays away for good, then I guess I'll just have to deal.

Comments, pep-talks, and stories encouraged at amymariesmith93@gmail.com

Sunday, February 5, 2012

Recovery Road

It's Super Bowl Sunday and normally I'd be conjuring up dips and platters and all kinds of yummy treats for the big game.  This is no ordinary Super Bowl Sunday....I'm still a little nauseous and tired and sore from Tuesday's surgery.  Although I feel a little better in terms of pain, I'm not nearly ready to be weened off the pain meds quite yet.  And afraid to become more "backed up" and having absolutely NO appetite, I haven't been eating too much and I've probably lost around 6 lbs already.  Once I go off the pain meds and finish my antibiotic, I'm sure I'll be back to feeling better, unfortunately, it's all on a much slower time-line than the first time.

In addition to the pain, I'm dealing with extremely annoying itching all over my body.  In some spots, particularly around my bra line and close to my drain location, I have raised, red spots which I'm treating with double-strength hydrocortisone cream. You know how the itching works....if you aren't thinking about it, it's fine, but once you start thinking about it and start itching, you can't stop! 

Despite the more painful recovery, I do have some really good news in terms of my drain tubes!!  I am barely draining at all and my serous fluid is straw colored so I'm certain I'll be rid of these drains on Tuesday!  It is so bizarre to me how completely different this mastectomy was from the last.  I never saw straw-colored serous fluid the last time, it was always red, and I drained and drained and drained.  I certainly wasn't expecting this and consider it a massive silver lining!

I'm in pretty good spirits, to be honest. The reality of not having breasts and having a part of my identity taken away hasn't hit me fully, but I guess I'll face it when I'm up and lucid.  I look forward anxiously to my final pathology report and my upcoming appointments this week.  From there I can formulate a plan - a plan of treatment, recovery and major changes in how to find balance that my body is obviously lacking.  I'm excited for these changes- it's like a new beginning.  The problem is that I have no idea where to start! 

Mom and Aunt Sharon are taking great care of me!  And a special thanks to Kelly S for the huge bag of gifts and for taking my loving (but loud) daughters for the day and evening. 

As far as the Super Bowl...I'm proud to be from Indiana- they have hosted a great Super Bowl from what I hear!  I could really care less about either team, but being a Colts fan, there is no possible way I could be happy if the Pats won our turf.  Instead, I'm rooting for Madonna and good commercials!  As always, please feel free to send me a happy, fun, or sappy email at amymariesmith93@gmail.com.

Thursday, February 2, 2012

Mastectomy, Part Deux

How about the irony that I'm writing this blog entry on Groundhog's Day?  Next verse, same as the first!  Kinda.  AND, I flipped through the movie channels this morning, and guess what was on?  SOUL SURFER!  (insert Twilight Zone music here)

Admittedly, I'm under the influence of pain meds right now, so hopefully I make sense.  This surgery site is much more painful than what I experienced with my other mastectomy last July.  The reason?  Dr. Y had to cut deeper into my pectoral muscle because he needed a wider safety margin.  It hurts to move and breathe.  Pain meds haven't really helped- they just make me sleepy.  I did switch pain meds this morning, so we'll see how that goes. 

The good news:  my Sentinal Node was tested during surgery and came back negative!  But when the node is tested during surgery they only take a couple of sections because of time constraints.  The node will be looked at more intensely at Pathology along with a lot of breast tissue that Dr. Y took out.  The final report will be done by next week.  Dr. Y says "rarely" does the pathology come back positive after testing negative in surgery, but "rarely" certainly doesn't apply to me, right?  So until next week, I won't rest easy quite yet.

Having suffered a lot of nausea after my last mastectomy, the anesthesiologist ordered a Scopolamine patch for me at my reconstruction surgery, and for this surgery too.  It worked for the nausea! YAY!  However, I can't see up close!  Both times I've had to wear my Mom's reading glasses to use my phone and laptop for about 72 hours after surgery.  {I'd like to know if any of you have suffered blurry vision from the Scopolamine patch}. Just to cover the bases, they did order Phenergen for nausea in the hospital so I could sleep. WOW, that stuff made me extremely woozy, I couldn't even form a sentence. My friend Joey, who spent the night with me at the hospital said I was hilarious-  I guess at one point when they asked me for my name and birthday, I gave them my address, then my social security number.  I couldn't come up with my birthday.  I have no recollection of any of that!

While I'm on the topic of my hospital stay, I want to give a huge shout-out to my friend Joey (Westfall) McGill, who spent the day and night with me at the hospital both times.  It gave me such comfort having her there.  Thanks so much, Jo!!!  Your positive outlook, faith, and sense of humor got me through the hospital stays.  And my rockstar Mom and my Aunt Sharon are taking such good care of me too, and I'm sure I'm not the easiest patient in the world.

Many have asked about how the kids are doing.  I may have the world's most amazing kids!  They are age 12, 11, and 11 for those who don't know them.  They are definitely worried about me, I can tell, and seeing me in pain is a little freaky for them, because I'm their rock.  Keeping the lines of communication open is the key- I encourage them to talk to me and I'm honest and up front with them always.  They will be better for all of this someday. 

Again, if you wish to email me because the comment box doesn't work, you can do so at amymariesmith93@gmail.com .   Also, follow me on Twitter at @amysmith70.  I love hearing from everyone! EVERYONE!