Tuesday, July 28, 2015

Getting My Number

In just a couple of hours my life will change yet once again.  This waiting phase will be over and I should know what's next.  A low number will mean hormone therapy is next.  A high number will mean chemotherapy is next.  A mid-number will mean more waiting is next.  That's what I do not want to happen.  I feel like I've waited enough.  I'm ready for the waiting phase to be over and action to begin.  I think I''m ready for either high or low. I'm ready to face whatever side effects are coming I'm just not prepared for even more waiting.  Stay tuned to this post and I will add the results later today.

And my number is  . . . .  11

What does this mean?  It means no chemotherapy.  We did discuss auxiliary node removal and/or radiation of chest wall.  After discussion of all options and potential side effects, and a phone call to a colleague, it was decided no surgery or radiation at this point.  :)

I will be having hormone therapy, but it will not be tamoxifen which is typically used for pre-menopausal woman.  That drug has a potential side effect of blood clots which is too risky for a wheelchair user with a traumatic brain injury.  So, within a couple of week I will be getting a shot of lupron to stop hormone production and instantly throw me into menopause.  Who ever knows exactly when menopause will begin?  This girl, that's who!  :)  Then four weeks from now I will be beginning my daily dose of anastrozole for at least 5 years.  During this month, I will also be getting a bone density test to establish a baseline before we begin messing with hormones.  I will also be getting a PET scan.  If it is clear, the plan progresses as determined today.  If cancer shows up elsewhere in my body, we renegotiate the treatment plan.  If it shows up in auxiliary nodes, surgery and radiation will be the next step.

I am instantly feeling much better.  Am I instantly feeling better because there will be no chemotherapy at this point?  Maybe.  But, I really think I am feeling better because I have a plan in place.  While surgery and radiation have not been ruled out completely, the waiting for PET scan results is not unbearable because there is a timeline in place.  I feel like the plan has been fully explained and we are all in agreement of the next step.  And, the plan is in motion.  There may be a detour to change the plan at one point, but I will know that within the next few weeks and I know not only what the plan is, but what the detour will entail.  I can handle detours as long as we keep moving.  I would be surprised if there aren't some detours along the way.  But, I think as long as we all discuss the plan fully and keep moving forward, I will be OK.

Monday, July 27, 2015

I Don't Want to Think About It

I don't want to be whiny and self-absorbed.  I've really been trying to avoid that from taking over much of my life and I really didn't want it to take up space here.  But, it's how I feel sometimes and I decided it was time to share it with all of you.  So, fair warming, this is bound to be a little snively, so read at your own risk.
Sadness from Disney's Inside Out
I don't want to think about cancer.  I'd like just one day when it doesn't enter my mind.  I'd actually like just a very small part of one day when I don't have to think about it, when I can go somewhere and do something and leave it all behind.  The problem is when something is inside your body it goes everywhere with you.  EVERYWHERE!!!!

I was hoping that after surgery I would feel like it was cut out and gone!  Well, I don't feel that way.  I know part of it is that micrometastic tumor they found in one lymph node.  Part of it is having to ask the doctor if cancer cells could have escaped through my circulatory or lymphatic systems and be lurking somewhere else in my body.  Part of it is facing the reality that I intellectually knew, but didn't actually feel, that cancer will be a part of my life FOREVER.  Forever means forever.  Maybe someday I'll have a day or even a few hours that I don't think about cancer, but that day is not today.

It doesn't help that I'm in the middle of obtaining bids for a bathroom renovation.  I tried so hard to get life lined up before surgery so that once treatment started, I could just focus on treatment, healing, recovery, and fighting the battle of my life.  I need my energy focused on that with some left over for my family.  I don't have energy to take care of other issues that should have been handled before treatment began.  I don't have the energy to help myself fight cancer and heal from surgery and at the same time manage government red tape.  I am not paid enough for this.  :)  And, every time I have to deal with the bathroom modification issue, I'm reminded yet once again why I even need this.  CANCER made this a necessity in my life.

I realized this week one way I've been trying to not have to think about cancer constantly is to read A LOT.  But, even doing that doesn't make the thoughts go away for long.  In fact, no matter what I read, I can find a way to connect it to my current situation.  You would not believe how many times cancer shows up in random books.  If it's not cancer directly, it is something related to what I am currently experiencing.  For example. a character in the book I am currently reading is taking pain killers for an injury.  The description of his experience with pain medication immediately makes me think of my current pain medication and recovery from surgery.  I just can't get away from it.

Why?  Because it is part of me. It is inside my body and goes wherever I go.  If I catch a glimpse in a mirror, or window reflection, I am reminded that my body looks different.  If I move a certain way and get a twinge around my incision, I am reminded of my surgery.  When I have to plan my life around doctor appointments/treatments, I am reminded.  When I pick up the mail and see the insurance statement with yet another medical claim, I am reminded.

I don't want to think about it, but I must.  I do constantly.  It is a part of me forever.  So, if you've actually made it through my whining today, please don't let it make you afraid to talk to me about my life.  Cancer is a part of my life.  I may not want to think about it, but I do constantly.  Bringing it up does not make me think about it.  I'm already thinking about it.  Asking specific questions actually helps me give specific answers and focus on the reality of life, not just let things run rampant in my brain.  So, ask away.  Whatever questions you might have, don't worry about upsetting me.  Ask away.  But, please make sure that's only a part of what we talk about and do.  Cancer is only part of my life.  Help me find other fun and exciting things to do/talk about.

I'm really identifying with Sadness from Disney's Inside Out today (and a little bit with Anger too)

Good Advice

Good advice from Disney

Thankful thoughts for today:
Health insurance
New Recipes

Thursday, July 23, 2015

I Am Not Alone

Great reminder.

Thankful thoughts for today:
Contractor bids
Feeling up to being productive
Victory in the Valley
Cell phones

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Friday, July 17, 2015

I Always Get Up!

Thankful thoughts for today:
Frosted Mini Wheats

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Thursday, July 16, 2015

Hair: Stage 2

Today was Stage 2 of hair styles during this journey.  Following surgery, I realized I am unable to do my own hair at this point and while my husband has been wonderful helping where needed, including washing my hair, he is not a hair stylist.  He does not want to spend time making my hair gorgeous every day.  My care attendants are happy to help but are not always here at the exact moments I need my hair done.  So, I went to the salon looking for a solution this morning.  I did not take any pictures this time.  I just told my stylist I wanted something shorter that I could just wash, put product in, and let air dry.  Then, I let her work her magic.  Here is the result.
 At this moment, I am quite happy with it;.  My stylist works miracles.  :)    I just hope it's as easy to take care of as she said it would be.  We'll see in the morning.  Besides, I told her there are three options here: 1.  I will love it and want to keep it like this regardless of my future
                      2.  I will not love it and just grow it back out.
                      3.  If chemo is in my future, it will all fall out or be shaved off completely anyway.

Exhale Gratitude

Thankful thoughts for today:

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Wednesday, July 15, 2015

Two Steps Forward, One Step Back

This is not a good day.  I've heard the saying "two steps forward, one step back" many times in my life, but I seem to forget about it.  Somehow, I had thought recovery would be a steady progression forward.  Some days slower than others, but still moving forward, each day better than the one before.  Well, today proves that is not correct.  Here's a picture of what recovery is actually like.

Yesterday was a brighter day.  I think I got a bit cocky about my recovery.  I was able to get a t-shirt on, my pain was manageable with less pain medication, I felt good.  Well, perhaps I took feeling good for granted.  My husband tells me I overdid myself.  We took a walk/powerchair stroll to Walgreens and later in the day to the YMCA where I worked out.  I found myself feeling up to doing more housework and not just sitting around all day.  Well, today, I feel like pulling the covers over my head and staying in bed all day.  Back to button down shirts, staying home all day, and taking pain medication faithfully.  Maybe this is a good lesson in doing all things in moderation.  :)

Maybe this is good preparation for whatever is to come.  There will be good days and bad days and I will handle whatever comes my way.

Treatment Plan

What's next?  What is cancer treatment really all about?  When will I be done?  When can we stop focusing on cancer?

These are all questions that I've been asked.  The short answer to when will I be done and when can we stop focusing on cancer is NEVER.  Once cancer becomes part of your life, it will FOREVER be part of your life.  There will come a day when there will be less of a focus on cancer treatment, but it will FOREVER be a major part of my life.

I am not a doctor so I can only speak about my own experience and my limited knowledge of what is to come.  As I learn more, I will share more, but here is what I know for now.

I consider the three phases of cancer treatment--cutting, burning, and poisoning.  And while you do all of these things to the cancer cells/tumor, since it is inside your body, you are doing these things to yourself including your healthy cells.  Step one for me was cutting (or surgery).  I thought having a bilateral mastectomy and sentinel node dissection would be the end of this step.  One major surgical event cutting the cancer out of my body and on to the next step.  However, I may be facing another surgery in the near future to remove more lymph nodes.  So, the cutting step may not yet be complete.

I have been told that burning is now off the table.  Since I chose a bilateral mastectomy, radiation is not in my future.

Next comes poison.  (That is my word for chemotherapy).  Will it or won't that be a part of my treatment plan?  I don't know.  So, we wait.  We wait until I have my appointment with my oncologist at the end of the month to get my Oncotype DX number and determine the next step.

I may not know what comes next, but I do know that I will eventually be on hormone therapy.  My cancer is highly Estrogen and Progesterone receptive, so I will be taking medication to block those hormone receptors on any cancer cells running around my body for a minimum of 5 years

Please hang in there with me as I go through whatever is next for however long each step takes for the rest of my life.

Thankful thoughts for today:
Tank tops
Repaired tire
Cell phone

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Saturday, July 4, 2015

I Looked in the Mirror

I looked in the mirror and what did I see.  I saw a warrior staring back at me.  I saw a different image than I am used to seeing.  The only real difference was the incision across my chest.  I have a long lateral incision that runs from arm pit to arm pit.  We measured it and it is approximately 27 inches long.  My first response was that I had been fileted.  The hunters/fishermen in my life tell me the incision is the wrong direction for that.  It should be vertical.  :)  I know I have not been gutted because my body still functions like all my innards are intact.  :)  But, I at least feel fileted, even if they went the wrong direction.

I realized what I now have is a visible reminder of the battle I am fighting .  Every time I catch a glimpse of my incision or at this moment feel it healing, I am reminded to fight.  My own body has been attacked, but I am fighting back.  I am willing to do whatever necessary to rid myself of this invader.  Surgery was the first step, but it will not be the last.

Will I scar?  Probably.  I look at my incision and can't imagine how I wouldn't scar.  But, that scar is a visible reminder of the battle I am fighting.  I hope to one day be able to look at it and see it as a visible reminder of my victory.

In the Selection series by Kiera Cass, America Singer talks about scars and says

“The best people all have some kind of scar.”  Some are visible, some are not.  But, everyone who fights ends up with some form of scar.

“On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived.” 
― Chris CleaveLittle Bee

“It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” 
― Rose Kennedy

Thankful thoughts for today:

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Friday, July 3, 2015

Good News/Bad News

Waiting.  That seems to be the story of my life right now.  Just waiting.  The good news is I feel more peace about waiting.  I had an appointment with my surgeon this week.  That led to still more waiting, but also confirmation of the plan in place.

Drain bags = Waiting.  Probably, the most annoying part of this process to date has been the drain bags required after surgery.  They do not hurt, but they are annoying to deal with daily--for myself and my helpers who have to drain them and record their output.   One had almost quit having anything in the bag, but had started leaking out of the drain bag site at night.  The guess is that this one has a clog in the tube inside my body that we can't address.  So, we leave the tube in so the drain site hole will remain open and it can leak out of my body.  GROSS!   I don't even want to think about what is escaping from my body.  I was not surprised to hear they have to stay in for awhile longer, but I was pretty disappointed. Drain bags are annoying!

I did receive good news.  The surgeon agrees with the oncologist decision to run an Oncotype DX test.  Both agree that test will give us the information needed to make a decision about  chemotherapy.  The good news is if additional surgery to remove more lymph nodes is needed, it will not affect my long term arm strength or mobility.  The good news is my overall immune system is in good working order and would remain that way even if I need further lymph nods removed.  The bad news is the chance of lympodema would increase in my right arm.

The bad news is one lymph node was micro metastatic.  That means some cancer escaped from the primary tumor and is now able to run around my body.  Is it possible the only cells that did that were in that one lymph node that has been removed and my body is now cancer free?  Yes.  Is it possible other cells have made their way to other parts of my body through my lymph and circulatory systems and are just hanging out, hiding in other parts of my body?  Yes.  TheOndotype  DX test is supposed to help us decide the next step.  The Oncotype DX number should tell us if the cancer will be receptive to chemotherapy or not.  We know this cancer is highly hormone receptive, so hormone therapy will be happening.  The point of hormone therapy is to block the hormone receptors on the cancer cells wherever they are in my body, so they cannot feed on hormones and in effect, starve to death.

So, we wait.  I sit in my spot on the reclining couch and only leave the house for appointments until these drain bags come out.  I wait to get the Oncotype DX results to know the next step. in my cancer treatment.  I wait for things to get finalized so my master bathroom can get modified.  I wait for my other house to sell.  I wait.  And I try not to go crazy during the process.

Thankful thoughts of the day:
Zip front shirt
Movie marathons
Reclining Couch

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