Thursday, January 19, 2012

Arm-Chair Radiologist

Last night, I was digging through my "Breast Cancer" file, and I came across my mammography films from last April.  I convinced myself that I could examine these films and actually see the tumor that was "missed" or "not detected" on my right breast.  Setting up the brightest lamp I could find in the house, I propped my laptop up for Internet assistance, and stared for a half-hour at my right breast image as if I was a radiologist.  Maybe down the road, a second look at this mammography by an actual professional will be prudent, but honestly, in my arm-chair radiologist opinion, the machine "didn't press the right spot" or something.  There, how's that for a scientific explanation!? The other explanation I thought of was that it's probably clearly there in black and white, but the radiologist didn't bother looking at it because he was so fixated on the cancer in my left breast that he forgot to look at the right side.  To be honest, I feel a little foolish, after having sent countless "get your mammogram, it saved my life" Facebook posts- ironically, my mammogram only got it 50% correct and that's not good when you're talking about cancer!  Thank God I had reconstruction, or I'm not sure how long it would have gone undetected.  I realize that none of this is productive, I'm just so angry about all of this and I don't know how to get a grip on it.  Aside from the obvious inconvenience of being a busy working single mother that still has breast cancer, I have to eat up all of my vacation days again recovering from surgery, meet my deductible again, and incur another $6000 in out-of-pocket medical expenses again, all by the end of January!  {I know, I know, I'm lucky to have a job and insurance, yada yada yada (silver lining),}.  One thing is certain- cancer doesn't care who you are, how old you are, or how much savings you have!

The reality of my mastectomy surgery in two weeks is starting to sink in, but there are some lessons I learned from the last mastectomy surgery that will undoubtedly help me this time:

1.  DRAIN DRAMA.  Drains SUCK but I'll leave them in a lot longer this time around.  Drains are there for a reason and last time around, I convinced the Doc filling in for my Doc while on vacation, that it was fine to take them out.  As a result, the site had to be needle-drained 5 times.  I'm positive Dr. S, being so annoyingly conservative, would not have removed them that soon, had he been at that appointment.

2.  NIPPLE NIGHTMARE.  I will take something for relaxation before my sentinal node injection.  During this procedure, the radiologist injects needles into 4 spots around the nipple w/radioactive dye (ouch, SERIOUSLY) so that the surgeon can "map" the lymph nodes during surgery.  This, I'm dreading- I wish I didn't know what was coming.

3.  ALIEN PEE.  Nobody bothered to tell me that because of said nuclear dye mentioned above, that your pee turns blue.  I mean, BLUE.  I completely freaked out the first time I peed after surgery.  No surprises there this time.  Wouldn't you think a "heads up" would have been appropriate in that situation?

4.  ANESTHESIA LIGHTWEIGHT. In both surgeries, I had problems with anesthesia.  After the first surgery, I was very sick and nauseous. Guess what? Dry-heaving after a mastectomy is very painful.  At my reconstruction surgery, because of that, the anesthesiologist gave me a Scopolamine patch and it worked for the nausea, however, my vision was blurry for a couple of days. We still aren't sure what happened after the second surgery, as to why I had all the breathing problems.  That will be addressed too, I'm sure, this time around. 

5.  ITCHY STITCHIES. Reconstruction on my breast was delayed a couple of weeks because of incision issues.  I'm sure this is hit or miss, but I might start earlier on the Xeroform gauze anyway as a precaution.

6.  PILL HOARDING. This time around, I will say YES every single time any of my team of doctors/surgeons offers me pain medication!  I have taken only 5 Vicodin (pills, not bottles!) through this whole ordeal and I don't plan to have to take many this time around either, however, I think that just in case there is a holocaust or zombie apocalypse, I should start stock-piling immediately.  It is 2012, afterall...  JK! In all seriousness, I'm not a big fan of pain meds and luckily to this point, I haven't suffered too much pain.

7.  BUH-BYE, CHICKEN CUTLET.  I used that damn silicone insert to "even me out" after the last mastectomy and it was a gigantic pain in the ass.  Once, at the gym, I used it in my sports bra.  When I run outside, I don't bother with it, but being at the gym makes me a little self-conscious....well, I look down after my workout and my "chicken cutlet" was in the middle of my chest- it looked like I had 3 boobs (3 very uneven boobs)!  Nice.  I'm going to invest in a good post-mastectomy bra, or two, after this surgery.  None of my old bras fit anyway because Kim is bigger.  Should I need treatment after surgery, my reconstruction will be delayed anyway, so I might as well be comfortable.

8.  NOBODY LIKES MARTYRS.  Accept all help offered.

Just get here, January 31!  Let's get this cancer out once and for all and MOVE ON.  Everyone is sick of the drama and I've got some living to do. 

The stupid comment box is still wreaking havoc on some of you, so please feel free to email me with love mail, hate mail, funny mail, suggestions, comments, jokes, dirty jokes, encouragement, prayers, or whatever to amymariesmith93@gmail.com.  Thanks!





Monday, January 16, 2012

Confessions from a PET Scan Recliner & Arrest of Oncologist

Thanks, everyone for all the emails, texts, in-box messages, cards, and prayers!  On a daily basis I am in awe of the inspiration and love pouring in from everywhere.  What did I do to deserve all the love?!  I can't wait to pay it all forward when I'm back on track.

Last Thursday was the big PET Scan.  Hopefully, you'll never have circumstances that lead you to needing one, but if you do, it's really very mundane.  First, the tech takes you into a room, has you sit in a recliner, and hooks you up to an IV.  Then a person practically dressed in HAZMAT gear injects the radioactive dye into the IV (comforting!).  For 50 minutes you have to sit still in the recliner to let the FDG (glucose tracer) go through your body.  There is to be no moving around or getting up, or even reading.  In fact, the tech said most people sleep.  One would think with the lack of sleep I got the night before, this would be a welcome blessing, but unfortunately, I cannot ever sleep unless I'm laying flat.  This combined with my 'adult ADD' and anxiety, I am going crazy in that recliner.  My mind starts racing, and the more I try to relax, the more anxious I become.  At one point I start crying and I need a tissue but I'm afraid to reach for the Kleenex box- what if I'm moving too much?!  I can hear my phone buzzing but I don't dare reach for that either.  With about 5 minutes left, I notice there is a camera in the room- hahaha- I'm sure all that was all very attractive!  Finally, the tech takes you into the room for the test.  It's similar to an MRI machine but it's quiet and there is no holding your breath or instructions given, it just takes pictures. So the minute they strapped me onto that table I was OUT COLD.  Laying flat = half-hour nap = silver lining!

At 1:30 that afternoon, Dr. Y's nurse called me at work and she was very excited to tell me that my scan came back clear on my liver.  No FDG uptake was detected where the spot was located.  I called my Mom right away and yelled out of my office to everyone that the test came back clear.  Pretty sure I've never felt relief like that ever.  I was so excited that I didn't have Stage 4 cancer, that I forgot I had cancer at all!

Time to talk about the arrest of my Oncologist, Dr. Whalen.  He was arrested last week after leading police on a high-speed chase on I-69 in Fort Wayne.  He was found to be extremely incoherent, tried to resist officers, and was taken to the hospital because of his seemingly crazy behavior.  Blood tests found him to be under the influence of meth, marijuana, and amphetamines. 

{I've re-written this paragraph 4 times now.}  I've decided that I'm not going to go into detail on this blog about my one appointment with him.  This man obviously has some serious problems and I hope he gets the help he needs.  I had one appointment with Dr. Whalen back in early August shortly after my mastectomy.  Let's just say he did not conduct himself in a professional manner and I left the appointment very weirded out to say the least.  When I had a medication issue in December, I saw a different Oncologist.  I am shopping Oncologists and have already received some referrals- thanks!

"Kim" update to report:  When I shaved my left armpit today, I could feel it!  I just assumed there would never be feeling there because a lot of time has passed since my July mastectomy.  Ticklish again!

SPORTS DIGRESSION:  Hey, Packer Fans....we Colts fans know exactly how you feel.  How many times did the Colts go throught the regular season losing 1 or 2 games, only to get beat by (usually) New England?  Too many times!!!  Underachievement sucks!!!

Tuesday, January 10, 2012

Timeline and Pre-PET Anxiety

Today, I had two people ask me why I haven't posted a new blog entry lately.  Well, some of us have day jobs, people!  Not to mention 3 kids and all of their activities.  {By the way, the frozen meals Laura and Cass brought me last week are coming in very handy this week with 3 basketball games- thanks, girls, the lasagna rolls were a real hit!}  SILVER LINING!

I've also had a lot of people tell me that they had no idea what I was going through and of course, they have many questions.  Living in a small town and going through all this crisis has also been interesting- I've heard all kinds of funny, false rumors.  I find myself getting frustrated explaining a lot of the procedures, diagnoses, etc. over and over again, but I have to remember that A) I personally didn't know about this stuff before it happened to me, and B) I was the one who chose to NOT be private about this whole experience, therefore, I have to accept and understand the curiosities of others. If you see me around town, don't hesitate to talk to me about my health- 90% of the time, I'm up for it.  If I'm not, I'm holed up at home and I avoid people. My close friends definitely sniff this behavior out, and pull me out of it by: bringing me Blizzards (Kathleen), bringing me breakfast (Joey), kidnapping me for a long walk (Kelly).  Calls and texts from long distance friends; in-box messages from people who don't know me, and I don't know them, but found out about my blog through mutual friends; emails from colleagues...these all hold profound meaning to me and I am so blessed to have so many caring people pepper my life!

For those who are just getting up to speed to what's going on with me, I'm going to write a quick timeline to catch you up with what's going on- I'm sorry if this is repetitive for some of you- skip ahead past the bullet points. 

First, here is my health history in a nutshell (pre-cancer).  It's short, because I WAS completely healthy before f'in breast cancer!

*I'm a 41-year-old, healthy weight female. 

*I exercise regularly

*No allergies

*No surgeries except wisdom teeth extraction in 1987. 

*No fertility issues

*1 healthy pregnancy, 1 stressful twin pregnancy; pre-eclampsia- all healthy natural deliveries (NO DRUGS- yeah, that's right, I said NO DRUGS, NO EPIDURALS)

*Frequent UTIs since the age of 22

*Baseline mammogram performed at the age of 37 by advice of my doctor.  It was fine.

Here is timeline since my last mammogram performed in April of 2011:

APRIL 2011:  Routine mammogram detected calcifications in left breast
APRIL 2011:  Magnified mammogram showed clustering of these calcifications, so biopsy ordered
APRIL 2011:  Biopsy performed and Ductal Carcinoma In Situ was diagnosed (non-invasive Stage 0 breast cancer)
MAY 2011:    After many consultations, I decided on left-side only mastectomy w/reconstruction
JULY 21, 2011:  Mastectomy performed on left breast and expander put in place
JULY-SEP 2011: Weekly trips to plastic surgeon to "fill in" expander slowly with saline to stretch skin to make room for implant
NOV 2011:  Genetic counseling (I will blog about this experience separately in the future) and genetic testing for BRCA1 and BRCA2 (breast cancer gene).  I tested NEGATIVE.
DEC 21, 2011:  Implant surgery by plastic surgeon.  Left-side gel implant put into place.  While surgeon went into my "good" breast to put in implant, he found a marble-sized lump.  It was biopsied immediately, and it was cancerous, so he closed me up right away.  While coming out of anesthesia, I experienced raspiness and a cough and my oxygen level was low.  They couldn't get it stabilized so they sent me to ER for chest x-ray and CT scan.  Everything was negative and the cough went away on its own.
DEC 31, 2011:   Consultation with surgeon who performed my first mastectomy.  I consent for right-side mastectomy and reconstruction.  He indicated that an incidental lesion was found on my liver during on the CT scan.  He wasn't too concerned but ordered MRI to be on the safe side.
JAN 4, 2012:   MRI performed on my abdomen (liver).  Results were inconclusive.  They "think" it's a benign adenoma but my surgeon orders a PET scan because of my history of cancer to rule out malignancy and metastasis.
JAN 12, 2012:  PET Scan scheduled
JAN 31, 2012:  Right-side mastectomy/placement of expander scheduled

DECEMBER 21-PRESENT:  FREAKED OUT MORE THAN YOU CAN EVER IMAGINE!  I open my eyes every morning, realize I'm not dreaming, and my stomach instantly hurts. But I pray for a minute and put my feet on the ground and go.  I just go. 

I read this morning that every time I affirm my trust in God, I put a coin in His Trust Treasury, and this builds up equity for days of trouble.  So I'm trying to trust, not worry.  Trying.

I hadn't intended to blog tonight, I'm sorry it's kind of long!  Be prepared for the next blog entry.  Please pray that the PET scan doesn't light up like a Christmas Tree.  If you are still having problems posting a comment on this blog, and you want to contact me, feel free to email me at amymariesmith93@gmail.com.

Friday, January 6, 2012

Tore Up from the Liver Up

I have an update to report on my MRI that was performed on Wednesday.  Unfortunately, the MRI was inconclusive and it appears that the spot on my liver is an Adenoma, but because of my cancer 'history,' my doctor is ordering a PET Scan to rule out the possibility of malignancy.  Adenomas are benign tumors, and are rare in the liver, but are widely associated with the use of oral contraceptives over a long period of time.  {We might be on to something here}.  I was on oral contraceptives for about 15 years, off only when I was pregnant.  So this would make sense if diagnosed, but I am not going to self-diagnose when we really have limited information.  Adenoma on the liver, although considered benign, can still cause many problems and can even become malignant down the road, and would need addressed one way or another, if that is indeed the diagnosis. The optimist in me and "believer in things meant to be" wants to believe that I had breathing problems after my last surgery, so that I would need a CT scan at the ER, so that it showed I had a small lesion on my liver, so that my surgeon would investigate it further, so that we now know I have a potential liver problem caught early... (my keyboard to God's ear).  But enough on all the speculation....my PET scan is next Thursday, please PRAY for my sanity until then!

As it stands now, my mastectomy, right-side, and placement of expander has been scheduled for January 31 at Parkview Hospital- Main Campus in Fort Wayne. 

Hmm, let's find a silver lining (Hollye- you are at work, here)....well, my left reconstructed breast is fantastic!  I love the shape, size, and feel of it. It's a little bigger than my God-given size, but now it's in proportion to my God-given ASS.  With help from a friend, we have coined her 'KIM' and hopefully it won't be too long that 'KOURTNEY' joins her.

I don't want to make light of the situation, believe me, cancer SUCKS.  I'm anxious and forlorn and I'm really trying to stay positive, but it's really easy to let your mind wander down a dark path.  I appreciate and feel your prayers- please keep them coming!