The Big Easy - Part 2

MFT.  I will share with you that "M" stands for Medieval.  And "T" stands for Torture.  I will let you figure out what the "F" stands for all on your own.

Tonight was what I believe they refer to as the "dry run" for radiation.  I returned tonight to Froedtert and was introduced to my "team".  I will have the same three people, for the most part, for the next six weeks.  This evening I met Barb and Kacia (Kay-sha) and I believe the third person's name is Courtney (but you only get two at a time, so I will have to meet Courtney another day). They seem very nice and helpful, but I must be a dunce because when they told me that when I come in (I took that to mean "in the future") I can ask them for whatever radio station I would like, I just nodded my head and smiled. Refer to this moment later.

Here's what they don't tell you beforehand about the dry run  - in order to set the machines up properly for the exact area of your body that they are going to radiate, they take a series of x-rays.  Do you get to sit in a nice cushy chair for these rays of sunshine?  Oh no.  Of course not.  Nope.  You must lie on the same plastic table, with just a towel and a gown between you and the hard knocks life, with both your arms over your head and slightly raised, yet again, no real cushion under your head, and the chin strap firmly in place causing a wonderful choking sensation.  And, by the way, remember when that CT scan was the longest five minutes of your life?  Yeah....  These x-rays are gonna take like a half-hour.  Now, stay still.

I am not catholic, but Holy Mary, Mother of God, this is some kind of torture.  The lights go on.  The lights turn off.  You hear a clicking occasionally (of the x-rays).  Sometimes the bed-thingy moves suddenly causing a disorienting/nauseating sensation to creep into your head and then you realize there are people in the room with you again, but because of the damn (sorry) chin strap you can't see anything except what is exactly right above your head and, gee, it would be a little bit nice if they informed you of their presence, but then they are by your head with a marker putting dots on your body ("Don't worry, they come right off in the shower.") and telling you that the machine will now rotate under your body to take x-rays and then they are gone and there is more lights on, lights off, click, click, click.  All the while, your arms are above your head and slightly raised and they have gone from prickly, to painful, to numb, and then back again.  Oh, and did I mention the radio is set to the Country Station? I am sorry if this offends you, but that is a whole new torture all of it's own.  I thought I was supposed to choose a station in the future.  Not today!  Sheesh!  Thirty minutes of just about anything else (except, potentially Rap) would've been better.

And then...the second time they come in to adjust all the knobs and buttons and doo-hickys (not really, mostly they adjust my body to what I assume by the reflections I see, are lights appearing on it to show them where everything should be - thus, the tattoos), they tell me that they have to restart the computer (not the entire test, praise the lord, or we would have had some t-r-o-u-b-l-e) and that it will just take a couple of extra minutes.  Hey, no worries folks.  I didn't really need my arms, anyway!?

By that point, I had actually gone from being nervous, to somewhat relaxed, to extremely uncomfortable, to internally slap-happy.  Suddenly it all felt like a big joke to me.  Country music?!  Ha ha ha ha.  Computer reboot?!  Hee hee hee hee.  Tattoos and markers?  Ho ho ho ho.  X-rays and radiation.  ROTF.  

Okay, all set.  Now lie still.  For twenty more minutes.  Ahhhhhhhhhhhhhhhh!

The next time they came in I heard the biggest joke of all.  My nearly-B non-cancerous breast is in the way of the radiation beams so they will have to tape it down to get it out of the way.  Okay, what?! Yeah...they don't want to radiate anything else other than the specific area that needs to be radiated and that includes Girlfriend No. 1, so it will have to go ahead and get out of the way via a long piece of tape that stretches from my chest to....the table!  Yup!  The table.  Chin strapped in.  Breast taped down...to the table!  Awe-some.

I have no modesty left.  None.  It is gone.  I am now officially eighty years old and will be talking about just about everything you never wanted to know about being eighty years old.  Thanks, cancer. Good one.  I am now my grandma.  Try me.

By the time it was all over, my arms were somewhat floppy, my head felt fuzzy from being on that hard surface, my back was stiff, and ear was bright red from where the damn (sorry) chin strap was digging into it.  But forty-five minutes later ("Sorry that took extra long")...it was over.

Apparently, next comes the easy part??? 

Great Expectations

Disclaimer: I wrote this post several weeks ago, basically a few days after my second surgery.  I had actually gone through the process of posting it and then shortly afterward jumped over to Facebook to see what there was to see there.  When I got there I discovered that my sister had posted a very enthusiastic and wonderful post about how I was cancer-free -- and she included a link to this blog...which was just fine and totally okay, except that I didn't want a person who knew very little about me to jump from her excited post to my cynical and snarky post (below).  It didn't feel right, so I took the post down.

Later, I talked with a new friend of mine about our respective blogs.  Jamie is a member of the Young Survivor's Coalition, and she encouraged me to put this post back out there.  To not sugar-coat everything, but to be real.  I think that, for the most part, I have been pretty real on this blog.  I leave out details sometimes because it is either just too much information or not something I feel comfortable sharing.  And, in general, I make it a rule not to post on bad days because it is my experience that one bad day is followed by five good ones and I don't think those days are a fair representation of myself.  For example, I might have a down day where I question absolutely everything, but then the next days are great and I talk myself back up again and know that everything is going to be okay.  A few hours of negative thinking does not warrant a word-rampage -- I would rather wait for the time when I am back to myself to share my thoughts.

But, what I wrote below did not come from a bad day exactly, more like a general feeling of this experience overall.  And so...I am going to go ahead and share it.  In the end, I feel it was a positive message.  Happy reading.

05/01/2014

Apparently, I have been so spoiled by the miracle of your prayers throughout this whole cancer adventure that my expectations have gotten out of hand.  Chemo went so well and I was hearing that my tumor was 1cm or smaller and I just felt so close to that "Complete Response" thing.  And, I stupidly read on the internet - something they told me not to do and I really haven't done too much of - that getting a complete response greatly reduces your risk of recurrence.  I can't remember the percentage and don't feel like I should look it up now anymore, but yeah...I was just so excited because I was so close.  Really. I could taste it.  And, it sounded so, so good...

When I looked in the mirror after surgery, I felt like I no longer recognized myself.  Well, actually, I have been feeling that way for a long time.  But now it really hit home.  I have been bald for the last six months, I have a scar where they put in the port and a bump where the port sticks out.  My nails are discolored and my toes feel arthritic.  I have gained 10-15 lbs (depending on the day) and now I have mis-matched breasts -- one smaller than than even before.  I have a long scar across that breast as well as another one under my right arm.  I have a hole under my right arm with a tube hanging out of it where the fluid my body used to drain via my lymph nodes is now being drained into the tube.  I have to empty that tube several times a day.  When I look in the mirror, I am just not sure I see the same person anymore.

But, when our surgeon heard about my disappointment at the lopsided boobs, her response was something to the effect of, "But your missing the point.  Your lymph nodes were clear!  And, also I can't even tell when I look at you that one is smaller than the other." (As I am wheeled out of the hospital with a surgical bra on.)

I told Matt this evening that I guess when you have cancer you have to lower your expectations a little.  I guess you are not supposed to be disappointed by a .5cm tumor, or lopsided boobs, or hair that is coming in unevenly.  I guess you are supposed to rejoice that your hair is coming in at all, that you still have some breast left, and that there was hardly any tumor for them to take.

No really.  That is what you are supposed to do.  It just doesn't seem fair.

So...this is me, lowering my expectations a notch and apologizing for getting out of hand............

...Okay, and now this is me shaking all of the sarcasm out of my system and truly saying to myself and everyone I know and thanking God from the bottom of my heart that:

1) I am alive
2) I am cancer-free (and radiation will hopefully make that even more certain)
3) I am so blessed to have such an amazing network of pray-ers and supporters and friends
4) That even though I set my sights a little too high, the goal that we attained is still absolutely, and undeniably amazing.  And, I could never take that for granted.

So, thank you all so much.  I could not have gotten this far without all of you.

The Easy Part

What is the saying..."Life is what happens while your making other plans."  Yeah...life.  It keeps happening to me.  But, I guess that's a good thing!

Yesterday evening I received a call from Froedtert saying that they had gotten my Radiation referral and did I want to come in on Thursday (umm..tomorrow) to do the "Sim" (???) and meet with my Radiation Oncologist?  Umm...what?!  I had already been there Monday (surgeon), Wednesday (bouncing) and now they wanted me to come back on Thursday?!  My initial thought was, "No way, Jose!" but after talking to Matt, we decided it would be better to just get it over with and get the ball rolling so that I can start radiation sooner rather than later and have less to accomplish over the summer months when ALL FOUR kids will be home.  So...yeah...  I was already going to Froedtert anyway for an appointment with the Physical Therapist at 4pm, but I was looking forward to that appointment!

Anyway, point being, I did some more Froedtert bouncing today.  Here's how it went:

1:00pm -- Arrive at labs for a pregnancy test. Yes, despite my assurances that there was no way in hell I was pregnant, they required a pregnancy test.  What frustrated/angered me the most about this is that I went in expecting having to give a urine sample and instead found out they required a blood sample.  Huh?!  A bit of overkill, don't you think?!  And, thanks to them for not mentioning that to me.  I have this cool portkey thing for a reason - I can put lidocaine cream over it and then when they access it, I do not feel a thing.  But, when they don't tell me...well, then it hurts.  So, thanks for that, guys.

1:30pm -- Meet with the Radiation Nurse for some education on radiation.  Basically this is what it boils down to -- There are two side effects to radiation:

1. Skin irritation
2. Fatigue

Both are cumulative.  So, for the first two weeks I probably won't notice much.  After that my skin will start to tan and eventually redden and maybe even burn.  And, by week four I will be pretty tired.  "Not, you can't get out bed tired, but Chemo kind of tired...where you want to go to bed early."  Sigh.  I just started gaining my energy back(-ish).  Plus, because they are cumulative the effects won't wear off for at least 10 days after the last radiation appointment.

And so therefore to help with these two side effects, I should:

1. Stay out of the sun (Hey, did anyone else notice that summer is coming up here quickly?)
2. Apply lotion to my skin every night
3. Exercise (Ha!  Please refer to the Physical Therapist portion of this post, to see why that is funny.)

2:30pm -- Meet with my Radiation Oncologist, Dr. Wilson.  Dr. Wilson is very sweet (he is about to retire) and kind, but I can't help but internally roll my eyes at him.  Every time we meet he says, "This is the easy part!" in a jolly voice and with a great big smile.  I told Matt that he doesn't realize how often people curse his name when he says things like that, because...

They then proceeded to take me to a CT scan in another room, where I was naked from the waist up.  They had me lie down on a very hard, thin slab o' plastic, put my (very sore from surgery) arm over my head and into a cradle-thing, position my body exactly perfectly while my arm fell asleep and started buzzing, put a wet mesh thing over my chin that then hardened into a hard cast-like thing that kept my neck and head in place, drew all over my body...and then said, "We're almost finished.  You just have to stay still for five-ish minutes while we put you in the CT scan."  Okay.  Medieval.  Torture.

I am not prone to panic attacks.  I have never had to stop a single test they have done on me yet, but I tell you what...I came close with this one.  My neck and chin were fused into position and my arm was buzzing painfully and they slid me into this donut hole and I thought for a few seconds that I had to get out.  I HAD to get out.  I closed my eyes and started singing in my head, but even that didn't work.  I opened my eyes and counted.  Didn't work.  I only got to 15.  I closed my eyes and sang again.  I switched songs.  I switched songs again.  I thought about the buzzing.  I thought about how I needed to swallow and this thing on my chin was preventing it and if I did swallow did that mean I didn't hold still?  I swallowed.  And then I swallowed again.  I felt a little better.  I sang some more.  The machine spun around me.  I moved through it and then back again, the shadows changing under my eyelids as they came through the other side.  I swallowed again.  I breathed.  I swallowed again.  I breathed some more.  I continued to breathe. And finally it was over.  Longest five minutes(ish) of my life.

Only it didn't end there.

They left my arm buzzing in the cradle, while they cleaned my skin in three different spots, then poured ink over those spots, and then pushed a needle into those spots to give me tattoos so they could line the machines up exactly again in the future.  Oh.  And, then there was one more to do on the other side of my body.  One in each side.  Not so bad.  One in the tummy, worse, but not so bad.  One in the sternum.  Ouch!  Are you kidding?!  This is the easy part?!  Curses, Dr. Wilson.  Curses.

I was finally allowed out of the torture contraption, allowed to get dressed and escorted back to my husband.  He was working on a puzzle in the waiting room. I worked on it, too.  I felt a little better. I placed more pieces than Matt and then felt even better.  Matt walked me to my Physical Therapy appointment and we said goodbye and he headed home to help feed the kiddos dinner.

4:00pm -- I met with Diane Keller and she asked about my SIM and sharing the experience with her made me feel even a bit better yet.  I think I am going to love this woman.  She asked me some questions, the best one being, "What do we need to get you back to?  What kinds of things do you need your arm for?"  I stared at her blankly for way too long before finally saying to her, "You know, I wish I could tell you I need to play tennis or something fun like that, but really I just need to be able to pick up my son and open the car door."  She laughed and said that it was super-funny to her because she should have remembered the last time she had a woman in there who had four kids...and she basically said the same thing.  And here's where we come to why exercising is kinda funny as something to help with the side effects of radiation...like there's time for exercise...especially when all of my imaginary free-time is going to things like radiation appointments, surgery, and physical therapy.  BUT, there was good news.  She said that walking outside with the kids for 20 minutes counts.  That actually sounds really nice.  Can someone write that down on a prescription pad?  And, weather, could you please cooperate?!

After that, I laid down on a bed while she massaged my surgery scar, entire arm, and side.  It was SO nice.  And a bit weird as apparently my nerves are all messed up after the surgery and so it would cause this tingling down my side.  But, she said that was good.  She was teaching my nerves how to fire properly again.  My scapula (shoulder blade) is also apparently pretty messed up, turning outward when it's not supposed to, which is why opening car doors has not been easy.  This happens to about 25% of people who have the surgery I did and is completely fixable.  So that was good news.

I now have homework for my arm, but that's not so bad.  I already feel like I can move my arm better than I could before the appointment.  Amazing.

I finally arrived home, close to 6pm.  Ate dinner.  Helped with bedtime.  And crashed into bed once again.  I am hoping no one calls me tonight and tells me they want to torture me tomorrow.  They will hear a loud "NO" reverberating in their ear if they even try.

And again I say, goodnight.

Why Try to Make Decisions? Just Let Them Be Made For You!

What a crazy busy day!  First, we met with the Froedtert Research people to talk about the trials.  Then, I had a lab appointment where they draw blood to see how all my levels are.  Then, we had an appointment with my oncologist, Dr. Cheng, who I haven't seen in over a month now!

The meeting with the Research people went well.  At that point in the day, I still wasn't certain what I wanted to do, but at the end of the meeting, I did sign off on them checking some things to see if I even qualified to attempt to qualify!  Confusing, right?!  Well, apparently, I have to (1) have the right something or other present in my blood (HLA???) and (2) I have to have low HER2 in my tumor.  What's even more confusing about that is that "Triple Negative" means you are not ER+, or PR+, or HER+, and that's why they call it Triple Negative.  But, supposedly, just because you are not "+" does not mean you have none of these things present.  You can be low in ER, PR or HER, but not enough present to qualify as "+".  So, we pointed out to them that I am Triple Negative, but they said they would send the tumor away to find out if it had some amount of HER present in it.  At that point, if I meet these two initial qualifications, then I will be put through the actual qualification exams and whatnot to see if I qualify for the trial.  Sheesh!

Okay, so after that I went to labs, where they drew an extra couple of vials of blood to test for this HLA thing....and then finally made my up to see my Oncologist.  Dr. Cheng is such a nice guy and always so good at answering questions - and he does it in a way that makes you feel like you can ask him anything at all.  It is very encouraging.  Well, we told him about the trial and he was excited about it because he had been instrumental in bringing that trial to Froedtert (it originated MD Anderson) and he told us all kinds of stuff about it, etc. etc.  We told him how I have to have the low HER positivity and how misleading that is and then he said..."Well, you had your biopsy done outside of Froedtert, right?"  Well, yes, yes we did.  So then in that case, he can look it up in the computer system.  Yeah....I have 0 (zero) HER present in my tumor.  Sigh.  All that and I more than likely don't qualify anyway.  They are going to send it away anyway and get a second opinion on it, but it is looking like there is a really good chance I don't qualify for this trial.  

Well, at least that makes the decision super-easy!  Unless they decide to expand the trial to include HER negative people...which apparently they might do.  Ha!

Anyway, the appointment went well.  My numbers looked good and all that.  The best news to me was that Dr. Cheng said that although I did not get the Complete Pathological Response, I came very close (0.5 cm away), and I did get a complete response in the lymph nodes, which was the most important.  He went further saying that this has greatly reduced my risk of recurrence and that if he had to give it a number he would say I have a 10% chance at recurrence.  What?!?!?!  10%!!!!!!!  Ummm...like I said a few days ago, I am not sure what the recurrence rate it for TNBC patients, but I know it is higher than that.  10%!  That sounds like a pretty good number to me!  Especially when I compare it to the scary statistic that 1 in 8 women will have Breast Cancer - or 12.5%. Obviously, those two things are not really related to one another, but for some reason knowing that I have less chance of having a recurrence than I did of getting Breast Cancer to begin with is kinda reassuring.  

So, armed with that good news I came home, tired from a long morning of Froedtert bouncing (my new term for days when I am sent from one clinic to the next to the next), only to have to jump back in the car again to go to Kyrie's Spring Concert. I grabbed Declan on the way, and then returned home with three children while my mom had been watching Hugo. After a quick dinner and a hurried bedtime, Matt ran out the door with Kyrie again to take her to their repeat evening performance. I. Am. Beat. 

There's just enough time for a little bit of humorous TV to settle my brain and then I am off to La-La Land. Night y'all!

More Decisions

Mother's Day Flowers!

Quick Update:

Okay, so it has been awhile since I posted!  The good news is that all is going well.  I had the drain taken out last Friday (hallelujah!) and the bandages taken off yesterday.  Dr. Kong seemed very happy with how things were healing and said something about how quickly my skin had healed despite the fact that she had removed some of it.  So, yay(!) on that front and yay(!) for having much of my arm movement back.  I will go in on Thursday to begin Physical Therapy (PT) to help regain the rest of the movement.  My only concern right now is some random nerve pain I am getting when I move in a certain way.  They said this could last for a year...hoping/praying that PT can help with it.  It is not that bad, but when I accidentally move it in that direction, I do scream because it shocks me so much when it happens.  Thank goodness, it is not happening very often.

Decisions:

I have the opportunity to attempt to qualify for two different trials.  I can only enter one trial should I qualify, however, and so I have to make a decision as to what I want to do - and I can do neither if I'd like as well.  I would love opinions on this, so please feel free to comment on this blog or e-mail me directly if you have thoughts.  Here are my opportunities:

B-51
In this trial I would be randomized into either a group that receives radiation on both the breast AND the lymph nodes or just the breast.  They are trying to determine if they are over-treating women who had positive lymph nodes but then received chemo and came back with negative lymph nodes. Currently, the standard of treatment is to radiate both the breast and the lymph nodes.  If I don't do this trial, I will receive both breast and lymph node radiation.

The reason they think they may be over-treating women who fall into this group is because radiation to the lymph node area, after they have been removed can cause lymph-edema (swelling) in the arm that can be permanent.  They would like to determine if not radiating the lymph node area makes any difference on recurrence and therefore maybe should not be done so as to reduce this risk of lymh-edema.

NeuVax
In this trial I would be randomized into either a control group that receives a placebo or a vaccination group that receives the NeuVax vaccination. Either way, I would be required to go once a month for an intravenous injection in the thigh followed by monitoring or one to four hours.  This would happen every month for six months and then every three months for 2-1/2 years(!).  I would also receive a plethora of tests including either an MRI or a CT every three months for three years as well as an ECHO every three months for three years, in addition to the regular mammogram I will already receive every six months. Oh!  And, I am unclear on what this is, but a skin hypersensitivity test twice in those three years as well as some number of bones scans and chest x-rays(?!).  AND...blood draws every three months as well.  Sheesh!!!!

Needless to say, this study is a pretty big commitment.  On the other hand, knowing that I would be followed so closely for three years could set my mind at ease.  It could also be hugely annoying.  It may also reduce my risk of a recurrence if I receive the vaccination, which has been shown to be promising in the previous phases of its trials.  Then again, I would have to order my life around these appts. - babysitters, vacations, etc.  All of the appointments have to be within a set date and time in order to keep everything controlled.  And, CT scans and x-rays - that is a lot of x-ray exposure.  Is it worth the risk of all of that exposure?!  Then again, again, Triple Negative breast cancer has a higher recurrence rate than other types of breast cancers and they say that those first three years are the critical ones.  Being monitored so closely could catch something earlier than just mammograms and appointments every six months.  But, maybe a mammogram every six months is enough.  I mean, there is a limit to the ability of any of these machines and they just simply cannot catch something until it is big enough to catch - no matter how often you scan.  But, I have heard stories of people who go in for their checkup and nothing shows up only for them to find a HUGE tumor at their next six month visit.  Finally, another point I feel I should make is that participating in any research, no matter what the results, benefits, or risks to me, help future patients.

So yeah, a ridiculous decision, yet again.  Thoughts? Concerns?  Points I haven't thought of?  Please post in the comments or e-mail me.

This is time sensitive - I may have to make the decision of which one to attempt to qualify for by as early as tomorrow morning.  If I find out I qualify for the one I chose (in like a week), I can then decide if I actually want to participate.  Ugh!

Thank you!

Margins Clear!

Turns out, I don't have to wait a week!  The pathology report already came back today and my surgeon was nice enough to call from her conference in Las Vegas. And, the margins are clear!!!!

Phew!  I really don't think I could've handled any other report. I am so relieved. 

And now I can celebrate the whole thing! No more surgery (well...I guess I am not clear on how and when this port comes out, but no more major surgery!), nodes were clear, I can do the exciting research study!  Yeah!!!!!

And, I can move on. Radiation here we come!