Saturday, January 30, 2016

Feeling "Normal"

I feel the most "normal"/"relatively energetic"/"my best" in the mornings, after I finally climb out of bed and get moving a little.  This morning had me crying over cleaning the stovetop, because and it was a "normal" activity, and well, I was doing it!  Well, I also teared up while watching a scene in a Hallmark Movie Channel movie when the guy who spent the previous four years of his life thinking he ruined so many lives found out how many lives he touched, just by teaching a young girl to read (she in turn taught others, etc).  Both of these instances, I believe, are because one of the side effects of one of my medications, but I digress....  So, I get done what I can (I can unload and load the dishwasher, for instance, but I am no longer able to put the pots away in the drawer below the stove; I couldn't straighten up the last two times, so....) and I rest when I must.  The problem is, my mind doesn't seem to want to rest.  I'll have a separate blog post about relaxation techniques, and how to get the mind to rest.

Now I'm relaxing with a cup of Chocolate Raspberry Coffee in my pretty cup I bought in DisneyWorld lots of years ago, while gathering tax preparation paperwork.  I really need to use this set more often.  I also need to get back to DisneyWorld!  The coffee is  from Baltimore Coffee and Tea, if you're interested.  The Toasted Nut Fudge is pretty fabulous, too.  :)

Saturday, January 16, 2016

Maintenance Infusion? What's That?

In my post the other day (It's Not All Pretty Pink Ribbons), I mentioned the medications that I'm on now that chemo and surgery are over.  Not only was I a little remiss in my description (thank you, ladies, for pointing out my error), when I corrected it, it still seems a little fuzzy.  Let me try to clear it up here.

In conjunction with my chemo medication, I was also given Herceptin (transtuzumab) and Perjeta (pertuzumab).  Now that chemo is over, I still am on Herceptin and Perjeta.  I will be taking these meds (every three weeks, via infusion) for the rest of my life, or until they stop working and we need to try something else.  Here's a good way of explaining what they do, from

"Herceptin works by attaching itself to the HER2 receptors on the surface of breast cancer cells and blocking them from receiving growth signals. By blocking the signals, Herceptin can slow or stop the growth of the breast cancer."
Also, from

"Like Herceptin, Perjeta works by attaching itself to the HER2 receptors on the surface of breast cancer cells and blocking them from receiving growth signals. Perjeta targets a different area on the HER2 receptor than Herceptin does, so it’s believed to work in a way that is complementary to Herceptin. By blocking the signals, Perjeta can slow or stop the growth of the breast cancer. Perjeta and Herceptin are examples of immune targeted therapy.

In addition to blocking HER2 receptors, Perjeta can also help fight breast cancer by alerting the immune system to destroy cancer cells onto which it is attached."
Here are the links to the drugs' official websites, if you'd like to learn more:

In addition to Herceptin and Perjeta, I started taking Tamoxifen (daily oral medication) after I finished with chemo.  Tamoxifen helps to block estrogen receptors.  Here's a link if you'd like to learn more about this medication:

To monitor that the meds are working, and to keep an eye on any side effects, I still see my oncologist once every six weeks (down from every three weeks).  I have a CT scan done every three months, and a bone scan done every six months.  In addition, I see a cardiologist and have an echocardiogram done every three months (Herceptin can do damage to the heart).

So, the answer to the question, "When will your treatment be over?" is "Never".  Chemotherapy treatment is over, yes, but I will be in some form of treatment for the rest of my life.  May it be a long one.  ;)

Friday, January 15, 2016

Notes From the Infusion Chair

Yesterday I had my regularly scheduled appointment with my oncologist, and maintenance infusion number 6.  It was an incredibly long day.  They always seem to be long and tiring, these appointment days.  My first appointment was at 9:30am, which means leaving the house at 7:30am to allow for traffic.  On a good day, not at rush hour, it should take under an hour to get to Georgetown from my house.  It has, though, taken two hours to get there, in bad rush hour traffic.  Yesterday, we (Jimmy, my wonderful  husband, drives me) left just before 7:30 and dropped our 14 year old son off at school on our way.  Traffic was normal for rush hour, and we parked at just about 9:00am.  They called me back right away, took vital signs as normal, then we wait.  Sometimes it's a short wait, sometimes it seems to take forever.  While we wait, we pass the time chatting and/or playing games on our phones.  Inevitably, my mind wanders.  It still seems surreal that I'm here.  I sit in the waiting room with people who are wearing scarves or hats.  Then the realization comes.  I'm one of them.  I'm not here with my father.  I'm not here with my sister.  It's me.  I'm the one with the scarf on her head because her hair hasn't grown back enough to be comfortable.  I'm the one....  I sit on the exam table in the gown that's too small ("open in the front") waiting, holding the list of questions I have for the doctor ... and my mind wanders.  Think of a pinball machine.  Do you remember pinball machines?  Remember how the ball would ricochet from side to side, all over the place?  That's my brain as I sit on the exam table waiting for the doctor, and again while I'm in the infusion chair.  I can't even cohesively tell you where my mind goes.  I feel sorry for myself.  I feel incredibly lucky.  I feel like I don't want to do this anymore.  I feel like I hope I can do this for a very long time.  I feel sad that my husband has to deal with this, and has had to put his health on the back burner so he can concentrate on mine.  I feel sad that my boys have to deal with this.  I feel proud that my boys are handling it so well.  I think again how I think I'm on the easier side of this patient/caregiver relationship.  All at once.  I have all of these thoughts, and more, all at once.  Xanax to the rescue.  Relaxing music to the rescue.  Reading a good book to the rescue.  Knitting to the rescue.  Reaching out and having the wonderful husband of mine take my hand to the rescue.  Sometimes one or two of these, sometimes all at once.  Then all of a sudden, it seems (although it's hours later), we're done.  Luckily rush hour hasn't started yet, so it's easy traffic on the way home.  I usually close my eyes, so thankful for my husband.

Some other thoughts while in the infusion chair:
I think about how, for three weeks, it seems as though we can almost pretend I'm all better.  Sure, I take a daily medication, and I get tired a lot, but it's not like I'm going through the hell that is chemo anymore, right?  Normal life has resumed.  Well, normal is a whole lot different now, but it's normal.  Then I sit on the exam table and hear the doctor tell me that it's time for a CT scan (it's been three months already?) and a bone scan, and that she's ordering extra bloodwork to check my Vitamin D level (email from nurse later in the day; I need to start taking a Vitamin D supplement).  It's never going to end.  Never can be a long time, right?  :)

Wednesday, January 13, 2016

It's Not All Pretty Pink Ribbons

Here is the link to my caringbridge page on this subject:
  It's Not All Pretty Pink Ribbons

Click there and read that first, then come back here.  I have a few things to elaborate on.

Let me start by saying, I love pink.  Someone gives me something pink, and to me it's a caring gesture; it shows that person cares about me.  I wear the necklaces and bracelets.  I use the coffee mugs and water bottles, and the badge holder.  I write in the journal with the pink pen.  My husband wears a pink shirt when he takes me to my medical appointments.  I use the shawl and the blankets.  The candle sits on my nightstand for when I'm feeling a little nauseous.  Whenever I use one of these items, I think of the person who gave them to me with warmth.  When I see someone out in public wearing a pink ribbon, there's an instant sense of comradery.  Most of the times, we stop and chat, tell our stories to each other.

Breast cancer is portrayed with pink ribbons, pink wigs, pink tutus, pink everything.  Breast cancer is perceived as the "easy cancer".  Pink has made breast cancer seem beautiful.  Pink has given the impression that if we "fight like a girl", we'll "kick cancer's ass".  It's not that simple.  I don't think any cancer is "easy".    Most of the pictures we see are happy faces, and other than bald heads, otherwise healthy looking women.  What is harder to find are the sad stories and pictures.  Stories like the woman on her hospice bed, looking gaunt and much older than her years, at the end of her life.  The posts I've seen that say "I've had the talk with my oncologist.  There are no other options left."  Or, similarly, "I can't take the side effects of the medicines anymore.  I'm thinking about stopping my meds to have better quality of life, even though I know it'll be shorter."  These are not direct quotes from anyone; I am paraphrasing things that I've seen. 

In all the things I've learned over the past few months, one of them is this:  It seems that Stage IV people are put in a totally separate category than earlier stage people.  It seems that Stage IV people scare early stage people with their stories, and their mortality.  One lady said that she was actually asked to not come back to a support group meeting because she was scaring the other ladies.  Now, I ask you -- What in the hell kind of support is that?!  I think this kind of thing stems from the fact that for early stage patients, they are told that they'll get through treatment and be cured.  Easy peasy.  30% or so are then shocked.  Shocked, I tell you, years later when their cancer comes back.  It's Stage IV at this point.  Now, I'm not saying that my friends and family have treated me differently.  My friends and family have been wonderful.  There will be a future blog post about "my village".  It's public perception I'm talking about here.

I think that part of the problem is that most people don't understand Stage IV, that Stage IV is different.  In my personal experience, I can't tell you how many times people say things to me like, "I thought you were done with treatment." or "Are you still...." with a puzzled look on their face, or "You have another infusion, I thought that was finished."  "But you look good!" Let me set the record straight about that right here. 

While I was on chemo, in addition to the premeds, (Tylenol, Benadryl, Dexamethazone, Zofran), I was also given Herceptin and Perjeta.  Herceptin and Perjeta are used to treat patients who are HER2+.  From what I understand, early stagers receive these meds for one year after chemo.  Us lucky Stage IV people get to be on them for the rest of our lives.  The. Rest. Of. Our. Lives.  So I will still travel to Georgetown once every three weeks for infusions. There is also a daily oral medication that I take (Tamoxifen).  Again, there are differences.  Early stagers, I hear, take this medication for either five years or ten years.  Me, I get to take it for the rest of my life.  Keep in mind these three lifetime medications come with a lifetime of side effects.  Hot flashes, nausea, and a few other ones that I won't type here.  I still tire easily, need help walking when I'm super tired, get super tired super quick, and will cry at the drop of a hat.  Exhaustion is a big part of it.  Sometimes I have words in my head that I want to say, but they just won't form; sometimes I can't remember the name of a person who I've known for a long time, all of which is incredibly frustrating and most of the time makes me feel incredibly stupid.  Statistics say that the average Stage IV patient lives on average three years after diagnosis.  I choose to not go by that, since there's no way to know how long the cancer had been in my body before my diagnosis.  Also, how old is that information?  Things keep progressing, so does my life span (hopefully!)

The point it, I think the whole pink ribbon campaign has jumped the shark.  I think it started off with good intentions.  It was a great idea.  Billions of dollars have been raised, but how far have we come?   Still so many dying.  We're aware.  I think there is not one person on the planet who is not aware.  The push now is to shift those awareness dollars into research dollars to actually start saving lives.  Yes, lives have been saved by early detection.  But, remember, 30% of those "cured" will come back as Stage IV.  So, were they really cured in the first place?

There was a particular woman, Holley Kitchen, who has been a big advocate for Stage IV awareness and research.  She posted a video that went viral.  Here's the link to that.  Please watch it.  Then come back here.  There's an update.

Holley Kitchen

Since the video, Holley has been active.  She's been interviewed.  She was on Jenny McCarthy's radio show.  She tried to make a difference.  Holly died yesterday....  Google her name.  Look at her story.

Please, do some research on Stage IV.  It's serious.  It's not fun.  It's not a sorority.  It's chemotherapy.  It's breast amputations.  It's radiation.  It's CT scans, bone scans, MRIs every three months; blood tests more often.  It's a medi-port that I was expecting to have taken out a year after treatment that I realize will never be taken out because I'll never finish treatment.  It's mortality coming up and slapping you in the face.

Here are some good places to start.
I am Susan facebook page

Saturday, January 9, 2016

Being Careful What We Say

A friend posed the question on her facebook page, asking if anyone had made a New Year's Resolution. I almost responded with, "To stay alive! ;)" but then remembered that not everyone would take it tongue in cheek. Some would chuckle (maybe her and some of our mutual friends), but I'm sure someone would say, "Holy Crap!  I can't believe she said that!"  So, I didn't post, not wanting to turn her uplifting post in to something morbid. This brings to mind a few things cancer patients (or any chronically ill person, really) struggle with/adjust to.

Humor -- We have to have it. Sometimes we laugh at the most off the wall things. Sometimes people think, "Oh, my gosh, I can't believe he/she thinks that is in the least bit funny!" Sometimes we have to laugh about it, or we'll spend all of our time crying about it.  Here's an example of this that has nothing to do with my cancer:  When my sister died, we had gone through years of cancer treatments, and all the highs and lows, with her.  The last time she was in the hospital, we spent nine days with her, watching her die.  We helped her say goodbye to her friends and family.  We planned her funeral.  The day of the viewing, my other sisters and I (and husbands and kids) went to dinner between viewing times.  We were a few minutes late getting back to the funeral home.  Someone said something funny, so we were laughing as we walked in the door.  All heads turned and looked as us like we were all kinds of crazy.  Let me tell you this:  we had grieved her loss before she was gone.  Grief is a heavy thing.  Sometimes you need some relief from it.  So if I laugh about something that has to do with my cancer ... laugh with me.

Being careful what we say --  Sometimes people say, "How's it going?" or "How are you today?" and it's just a way to acknowledge/say hello. Sometimes they actually want to hear the real answer. Sometimes it's hard to tell which. Yesterday, someone asked how I was doing. Being honest, I said, "I'm feeling a little off today, so I'm just going to sit over here quietly for a few minutes if you don't mind."  The look on his face.  Then I remembered -- he really doesn't know my story; he was just being polite.  Then I spent a few minutes trying to make the conversation more comfortable.

Here's a thing I hear about with cancer patients -- Why does it seem as though it's my responsibility to make you feel better about my cancer?  So many times we find ourselves in the position of not only explaining our diagnosis and prognosis to people, but sometimes comforting them about it.  "I'll be okay."  "No worries, my body's handling my treatments fairly well."  I think it's maybe the look on the face of the person I'm talking to that makes me automatically want to not make them feel bad.  I'm really not sure.  I know this sounds a little disjointed, but it's been on my mind.  Usually I would let it sit for a day or two and come back to make changes, but it's been stewing for a while and I'm not sure I could explain it any better.  Ha! Almost put a LOL at the end of that sentence.  See what I mean about humor, and trying to make things not so heavy? 


Wednesday, January 6, 2016

Why I Was Happy to Wake Up This Morning ... and Other Superstitions

Take a look at January's calendar.  See how the 5th, 12th, 19th, and 26th are all lined up in a neat little column?  Get this -- My dad died on January 26, 2000 at the age of 68.  My mom died five years later, on January 12, 2005, also at the age of 68.  My sister died three years later (eight years after dad), on January 19, 2008.  See where I'm going here?  We really think my sister picked that day, exactly one week in between the two.  Since then, January 5th has been worrisome to me, but not like this year.  In addition to the dates, this year is eight years after my sister died.  That coupled with my diagnosis and, well ... I hope you don't think I'm off my rocker, but I was a little worried about yesterday.  I was feeling pretty well yesterday, so I wasn't overly worried, but it was still there, in the back of my mind.  So, I may die one year on January 5th, but this is not that year.  :)

Superstitious?  Maybe.  Some of you might think -- "You purport yourself to be Christian.  Christians don't believe in superstitions."  (Some of you might not -- more on my crisis of faith in a future blog entry.)  I think superstition does have it's part in religion; not all superstitions have to do with black cats and walking under ladders.  Maybe I shouldn't call it a superstition.  Maybe I should call it simply an odd thing.  Well, if you're interested in a few more odd things, keep reading. 

Here is a link to my caringbridge page journal from when I (thought) I saw my mother peeking in on me from the hallway to see if I was okay, just as she did when I was little.  This was the night following my first chemo session.  Scary?  No.  Comforting?  Yes.

Here's another.  This one goes back a few years, and has nothing to do with my cancer, but falls into the category.  When I was pregnant with Son #2, I took Son #1 with me to ultrasounds.  On the morning of one particular appointment, my mom called.  "Is it still a girl?" she asks.  (At all previous ultrasound appointments, the doctor said it was a girl.)  "I haven't been to the appointment yet, mom, I'll let you know."  So then she gets on the phone with Son #1 (age four at the time) who says to her, "Nana, it's not a girl; it's a boy."  Mom asks him who told him that.  "PopPop".  PopPop was in heaven.  So, as I lay on the table having the ultrasound, I relate the story to my doctor.  Doctor says, "Well, he's right.  It's a boy."  Wow.

Related to above, are countless times something similar to this happened:  While sitting at the dinner table, quietly, the little boy starts to laugh.  "Why are you laughing?" we ask.  "Riggo's licking my face."  Riggo is my dad's dog, also in heaven, who neither of my sons saw while he was alive.  :)

Last story.  Again, while pregnant with Son #2.  Early on in the pregnancy, I had a dream that I would die on the delivery table.  I don't remember most of my dreams, but this one was vivid, and I remembered it.  In it, I'm on the delivery table after the baby is born.  The doctor lays the baby on my stomach before handing him over to the pediatric nurse.  Then the nurse comes over, and as I hand the baby to her, I hear disembodied voice say, "You won't survive."  Terrified, I was.  My husband is a big proponent of, if you tell people about your dreams, they won't happen.  So I told everyone.  My friends, my neighbors, the poor people behind me in line at the grocery store.... 

When I told the delivery room nurse (before delivery) and described the room to her, she told me that they only had one room that looked like that, and she would do her best to get me into another room.  She did.  :)  Also, I wasn't expecting the doctor to put the baby on my stomach because he didn't do that with Son #1, so I didn't tell him.  Well, he did.  OMG!  So, shift change happened before the nurse came for the baby, so the new nurse had no idea.  She looked at me like I was crazy when I told her, "Long story short, I know it's weird, but here's how it's gonna go -- I'm not going to give you the baby.  He (pointing to husband) will take the baby, and you can take the baby from him."  You should have seen her face.  I explained it when she came back, but I'm sure she thought I was all kinds of crazy.  Meanwhile, my sister (who is a nurse and at the time was working on the cardiac floor of the same hospital) called at 11:00pm to see how things were going and that she was heading home (baby wasn't born yet).  As there was only one nurse in the room with me (doctor was sleeping down the hallway, waiting) and I remember tons of people in the room with my first child, I asked if she could stay.  She did.  Two weeks later, she called and asked me why I hadn't told her about my dream.  I said, "I'm sure I told you.  I told everyone!"  If I did, she didn't remember.  Turns out, she had had a dream, too.  In her dream, I coded on the delivery table.  So, when she called the room at 11 and said she was going home, she was in actuality going to sit in the waiting room, just in case they called a code.  Do you have chills reading this?  I do, every time I tell it.

I'm sure there are many more examples.  You probably have a few examples yourselves.  Sometimes these things happen and we don't really notice them, or brush them off as being a coincidence.  I'm a firm believer that there are no coincidences.  How about you?

Friday, January 1, 2016

Happy New Year!

The other title to the post could be "Stop Wishing Time Away!"

"I can't wait until Friday!"
"I can't wait until my birthday!"
"I can't wait until Halloween!"
"Christmas isn't here yet?!  Counting down the days!"

Then there's the ball drop on New Year's Eve with the ten second countdown.

We're constantly looking forward to the next event.

Along the same vein, how often do we say things like, "One day, we'll...."
"One day, we'll take that trip we've been wanting to take."
"One day, we'll go visit those relatives/friends we've been meaning to see."
"One day...."

For me, the older I get, the faster time passes.  I sure wish it would slow down. 

In 2015, my eldest son graduated from high school. As he walked down from the stage back to his seat, I saw the image of him from his preschool graduation juxtaposing on the real-life image, flashing back and forth.  My little boy had grown up.  How did that happen?!  A few months later, my youngest son became a freshman in high school.  Wow.

I understand that we're all going to die someday.  But that's just it.  It's always "someday".  Having mortality come and slap you in the face makes you stop and think.  "I wish our family had taken more vacations."  "I wish I hadn't yelled at my kids so much."  "I wish...."  Realizing that your days are numbered is a sobering thought.  So now, I don't wish for Friday to get here (well, sometimes on Wednesday or Thursday when I'm super tired at work I do), I don't wish for the next holiday to arrive.  All of these days come up too fast for me now.  Instead of wishing time away, I'm wishing I could turn back the clock.  I would love to take those untaken vacations that we never had time or money for.  I would love to spend more time with my children, running in the yard/at the park, playing games, etc.  It's time to start doing those things now.  Don't wait any longer.  No, the kids aren't little anymore, but we can still spend fun time together (movies with David, Legos with Jimmy).  I'm just so tired these days....  The message here is an old one: Take time.  Take time to do the things you love, with the people you love.  Don't just exist and float through life.  Live it. As I write this, Tim McGraw's song Live Like You Were Dying comes to mind.  Talk a little sweeter.  Love a little deeper.

I was looking forward to midnight on New Year's Eve this year.  I haven't stayed up for the ball drop in years, but I was actually thinking about setting an alarm this year so that I could toast out the old and in the new.  January 1st is symbolically a day of fresh starts, of new beginnings.  I guess, for me this year, it was supposed to be me all of a sudden being magically back to normal.  2015 was such a rough year for my family, 2016 has to be better, right?!  Then I realized -- the time between December 31 and January 1 is just the flip of a calendar page.  I woke up this morning feeling tired, sore, and queasy, just like every other day.  It's going to take some time, this recovery, time.

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