What Changes Are Coming?

I'm asking for some input and advice.  I'm especially needing input and advice from those who have been there.  Let's get really specific, if you or anyone you know has made breast cancer decisions and also happens to use a wheelchair, I'd love to hear from you.

Here's where I am in this whole process.  I am awaiting genetic testing.  When those results come in, final decisions will be made about surgery.  If the results are positive, they are recommending a bilateral mastectomy and removal of ovaries.  If the results are negative, I have more options:  lumpectomy with radiation, one-sided mastectomy, bilateral mastectomy.  I have decided I will be having a mastectomy regardless of test results, maybe even bilateral.  Removing the lump will still leave cancer in the milk ducts, and although we hope the radiation kills it all, that is really all it is, HOPE.  I don't want to spend any more time than necessary hoping my invader is really dead and not just hiding out waiting for later.

Then, I have to decide whether to have reconstruction or not?  And if not, to wear a prosthesis or just live flat?  The big decision about reconstruction or not is it's impact on my independence and the use of my arms.  As wheelchair users know, your arms are important.  They basically do the work of arms and legs for me.  I also know, it is definitely possible to live a full life without 100% use of your arms.  I happen to personally know amazing women who use a wheelchair, have limited arm use, and have full, successful lives.   I began what I call my "new normal" almost eleven years ago when I began life in a wheelchair.  I'd like to think I have successfully figured out how to do that.  Well, my husband told me, I am just getting started figuring out my "New, new normal."  And, I know whatever that means, I can do this.  But, I don't want to.  :(

I've been told that reconstruction will mean a long recovery period.  And, it will mean weaker arms and shoulders, possibly for a few weeks or months, possibly forever.  Do I want to risk that?  Is reconstruction really worth the risk?  

So, I'm asking for help making these decisions.  I know the final decision is mine, but I'd love to be able to weigh as much advice as possible.  I'd also love some advice on what's coming and what I should do to prepare for this change in my life.

I've started arranging for increased help following surgery.  I know I will be much more dependent on others, especially if I can't use my arms.  I've started the process for some additional accessibility modifications to my home that will be needed as I lose independence.  I've started trying to plan ahead for meals, things to keep me busy while still following doctors orders after surgery, clothes I can get on after surgery.  What kinds of clothes should I plan to wear?  

Right now, I'm trying to focus on preparation for surgery.   But, chemotherapy and radiation are still possibilities and hormone therapy is definitely going to be part of my life.  So, for those who have experienced these, what should I be thinking about?  What plans should I be making?

I'm counting on all of you to help me through this.

If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!

Cancer Will Define My Life Forever

I never thought I would define myself by my disease/disability, but at this point I’m feeling like cancer will forever define my life.  I do not define myself by my wheelchair use or traumatic brain injury or other disabilities.  I am a wife, mother, piano teacher, Christian, friend, daughter, writer, etc. who happens to use a wheelchair and have a traumatic brain injury.  Now, I get to add, who happens to have cancer.  At this moment, I am a cancer patient.  Someday I will be a cancer survivor.  But, my life will forever be defined by cancer. 

I was struck by that as I attended my eye appointment this week.  I had to mark “cancer” on my health sheet and my daughter had to mark it on her family history.  I’ve done this at my other appointments this week, but those were appointments related to my cancer.  This was my eye doctor and I realized at that moment that I will always be defined as a cancer patient and my children now have to acknowledge my cancer every time they fill out health forms. 

I was hoping getting a plan of action in place would help my frame of mind.  I was wrong.  I want nothing more than to forget for at least a few minutes that I have an alien invader inside my body.  That has not happened, nor do I see it happening any time soon.   I’ve been asked several times over the past few days how I feel.  How do I feel?  How should I feel?  I don’t feel like I have cancer.  Physically, I feel no different today than I did a month ago before all this began.  I have no pain.  I have no fever.  I have no indication that there is an invader living inside my body.  Surprisingly, my blood pressure has even remained at or below normal even during all the doctor appointments I’ve had this week. 

Physically, I guess the answer is, “I feel fine.”  Emotionally is another story all together.  I feel like I have an invader living inside my body and I don’t even really know they’re there.  But, I will never again feel completely free from this invader.  Even when they cut it out and do whatever follow up treatments come, I will constantly be wondering if it is really gone or just doing a great job of hiding out and waiting until it’s bigger to show itself.  The rest of my life will be defined by cancer.

Don’t be afraid to ask questions or talk to me about my cancer.  I may not want to think about it, but I always am.  Nothing you say will remind me that I have cancer.  That thought is constantly in my mind.  And, it is not going away.  I will not “get well soon.”  This is a lifelong battle.  Hopefully, there will come a day I will be declared cancer free, but it will not be soon.  And, it will never mean I can relax and let my guard down.   

So, I guess the moral of the story is I will have rough days emotionally for the rest of my life.  Like it or not, once cancer enters your life, you are forever defined by cancer.  And, in case you didn’t know.  CANCER SUCKS!

Thankful thoughts for today:

Rain free track practice

Talking to someone who's "been there"

Glasses ready in one hour

Wonder Woman socks

Raised garden planted

If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!

Plan of Attack

I saw my oncologist today so now my treatment team is complete and plan is in place. The first part of the plan is underway--genetic testing.  So, we wait.  I'm already a little tired of waiting, but at least things are supposedly happening, they just take time.  Next step, surgery.  For some, the next step is chemotherapy.  But, my oncologist agreed that with the size and grade of my tumor and the fact that it is HR-1 negative, surgery can be the first step.  So now is the time to decide the extent of the surgery.  After surgery comes the pathology report and then chemotherapy if needed and then radiation if needed.  This is all followed by a minimum of 5 years of hormone therapy.

So, now I know, maybe what is coming.  I'm sure there's no real way to know what's coming until I actually experience it, but at least I have a little idea and know what to research.

Regardless, this is the beginning of the long haul.  Please hang in there with me  I sure don't want to do this alone.

Thankful thoughts for the day.,
Improved glasses prescription
Complete treatment team and plan
Nap
Supportive teachers


If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!

Wonder Woman

Yesterday turned into a much longer day than I had originally planned.  My carefully balanced, teetering tower lost a few pieces, but hasn't come crashing to the floor yet.  :)  So far, the kids have had to miss some Live Lessons for school and a couple of fun activities, but nothing life changing.  Good thing they record those Live Lessons so they can listen to the recording later to see what they missed.

My first appointment of the day was at the breast care center.  I'm so thankful they were able to squeeze me in bright and early.   I got to meet my doctor, have another look at the mass via ultrasound, see the mammogram for the first time, and spend a lot of time talking about what is to come.  There was so much information, I'm thankful my husband was there taking notes.  We have set up a notebook to hopefully keep all my information together, so I'm not the one messing up appointment times.

We talked about my diagnosis and what all the different letters/numbers mean.  The cancer is grade 1 (which means less aggressive) and estimated at a Stage 1.  We won't know the stage for sure until after surgery, but it is estimated to be a small, non aggressive type.  :)  It looks pretty much the same on ultrasound as the first time I saw it.  It is hard to differentiate to the untrained eye on a mammogram.  All dense tissue and my cancer cell look very similar.  It just has a more defined circular shape whereas the rest of the dense tissue looks more like cirrus clouds.  I'm thankful whoever read my mammogram caught it and decided it needed further testing.  I definitely would not want to wait until even the untrained eye could tell "one of these things is not like the other.  One of these things just doesn't belong."  I'm pretty sure at that point, we would not be looking at Stage 1 cancer.

We also discussed treatment options and what I can expect going forward.  I am currently having genetic testing and waiting not so patiently for the results.  The doctor wanted to explain why it was important for me to have genetic testing even though I already have cancer.  She didn't have to convince me of its importance.  I already knew that it was important to know if I have a genetic marker to help determine the future care of my daughter, as well as my mother and sister.  If I need to be the guinea pig to help preserve the health of those around me, I will gladly do it.  What I didn't know is that the genetic testing results will help determine my current treatment.

Surgery will be happening next regardless of genetic testing results.  If the test results are positive, a bilateral mastectomy will be happening and probably removal of ovaries.  If the test results are negative I will still be getting a mastectomy.I will just have to decide if it will be bilateral or only right side.  And, I will need to decide whether I want reconstruction, an external prosthesis, or nothing.  It will not be until after the pathology reports come back after surgery that I will know about chemotherapy or radiation.  My cancer is hormone receptive, both ER and PR positive, so I will be having hormone therapy for a minimum of 5 years.  This is not hormone replacement therapy, giving me more of the hormones.  This is shutting down hormone production.

So, that is where I'm at with treatment knowledge.  And since a mastectomy with possible reconstruction will take place, the breast care center made an appointment for my to talk to the plastic surgeon about possible reconstruction.  That appointment left me with even more to consider before a decision is made.  It also left me with the doctors working on getting surgery scheduled at some point after the genetic results arrive IN THREE TO FOUR WEEKS!!!  WHAT???

The good news is this gives me time to make an informed decision about exactly the type of surgery and impact on recovery, independence,, etc.  The good news is I will get to help my children finish this school year before the genetic testing results are in.  The good news is I will get to attend all end of the year school activities.  I think that's what all this means.  I do see the oncologist tomorrow so we'll see what he does to my precariously balanced teetering schedule of activities.

Just in case you're wondering how the title of this post fits its content, I have decided I must wear my Wonder Woman shirt to doctor appointments.  Monday, when someone screwed up my appointment and I had to reschedule for Tuesday, my first thought was "it's a good thing I have more than one Wonder Woman shirt.:"  :)  So, I wore red on Monday and purple on Tuesday.  Wearing my Wonder Woman shirt gives me superpowers, right?  Does that mean, if I have to take it off to be examined, my superpowers are gone?  Maybe I need to get something Wonder Woman themed that won't have to be removed during doctor appointments.

Thankful thoughts for the day:
Understanding and supportive teachers
Time to prepare birthday celebration for husband
Storm trackers and breaking into regularly scheduled TV
Libraries

If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!

Gratitude Changes the Present

I Don't Have Time for This

I don't have time for this.  I've been saying that since my diagnosis, but that really came home today.  When I received my diagnosis last week, the first thought I had was about how full my schedule already is.  I don't have time to add anything new.  Although the waiting period was more stressful than I would like to admit, I was glad I had no extra cancer related appointments until today.  I already had a very full calendar last week that I was not looking forward to adjusting.  And, my son had a very important event over the weekend that I did not want to miss.  I was so thankful I didn't have to choose.

Well, I had readjusted my schedule for this week to add an appointment with the breast care center/surgeon and an appointment with the oncologist.  I tried to work a couple of appointments into my already full schedule of kid's medical appointments, online school schedule, eye appointments, kid's social activities, church, track practice, teaching piano lessons, etc.  I thought I had it all worked out so that everything could happen and my husband could even attend my appointments without taking too much extra time off work.  Then, today arrives.

In case you didn't know, I don't handle change all that well.  So, when I arrived at my appointment at the breast care center only to find out someone somewhere had messed up and my appointment was not really scheduled until tomorrow and later in the afternoon and with a DIFFERENT DOCTOR I was a little upset.  My carefully balanced schedule came crashing down around my shoulders.  I DON'T HAVE TIME FOR THIS!!!  The nurse at the breast cancer center was able to talk to me about my diagnosis, let me have a copy of my report, and work some magic so that my appointment with the doctor is still tomorrow, but at least now it's early enough my husband can attend the appointment with me without missing work.  My crazily balanced schedule is precariously teetering, but still hanging in there.  We'll see what happens to it tomorrow when we get more answers and hopefully schedule surgery.

For those of you out there waiting to hear the next step, there it is.  I will be having surgery.  Exactly what type I'll know more about tomorrow.  Right now, I do know I have been diagnosed with Invasive Ductal Carcinoma, Well Differentiated, Nottingham Grade I/III, Nottingham Histological Score is: (Tuble Formation-2, Nuclear Pleomorphism-2, Mitotic Figures-1)  My results came back that the cancer is also very hormone reactive to both estrogen and progesterone.  So, tomorrow I will learn more about what exactly that means.  I think the next step will be surgery and any additional treatment will not be decided until after the results from surgery are back.  So, I'll keep you updated as I know more.

What did I learn today?  I learned that having some answers does make it much easier to deal with what is.  I have always said that I can deal with whatever as long as I know what I need to do.  I've learned that is true.  I learned that I want to face this aggressively so I can hopefully deal with it once and not have to revisit cancer treatment every few years.  I also learned that in the future I will handle my own scheduling or at least double check before I head to appointments.  :)

Thankful thoughts for today:
Great kyphosis appointment for daughter
Appointment found early
Beginning of answers
Excellent reports about surgeon


If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!

Giving Thanks in All Things

I realized throughout all this that I've been remiss in doing something I know is important.  I have not been listing my thankful thoughts for each day.  I have been giving thanks, but it's been more in the moment and not intentional.  Most of you know how important maintaining an attitude of gratitude and giving thanks regularly is to me.  For those who don't, check out my previous blogs about it.
http://angel-memoriesforgotten.blogspot.com/2012/12/count-your-blessings-talk.html
http://mwks13.blogspot.com/  (My platform as Ms Wheelchair Kansas 2013 was "Maintaining an Attitude of Gratitude", so the entire blog has posts related to that important theme.)

Giving thanks and looking for the blessings in EVERY situation is so important.  I will be listing thankful thoughts every day.  But, they will only be on one post per day.  Join me in listing what you are thankful for each day.  Remember, when there is thankfulness and peace in your heart, there is no room for anger, worry, fear, and other negative feelings.

"Thank God no matter what happens.   This is how God wants you who belong to Jesus Christ to live."
                                                                             --I Thessalonians 5:18 (MSG)

Thankful thoughts for today:
Safe travels
Great friends
Encouragers
Free Spirits

If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!