Patience...

There are certain situations where I have an exorbitant amount of patience. 
Waiting to start the medicine to Cage this Beast in my body is not one of those situations. Although there was some time I needed to wait in between the brain radiation and starting the meds, I'm now ready. Starting the new meds definitely creates its own anxiety, however, waiting is certainly stirring more.

I visited both my oncologists this week and was prescribed my oral medication to start the process. Because this is a Big MC treatment, and we have to deal with insurance companies (which I'm so grateful to have) and preauthorizations, things are complicated.  So, here I still wait in anticipation of starting. I'm hoping that will happen by Monday. I did receive a 15 minute infusion on Thursday of some meds to counteract some potential side effects and I'm grateful that all went smoothly (knocking on wood at the moment).

Meanwhile, let me just say how much I LOVE my doctor at Dana Farber. She is basically the perfect match for me. She is so very smart, competent, confident, optimistic and KIND. I liked her the first time we met weeks ago, but now, I LOVE her...for real. 

The phrase I've heard most from people as they continue to shower me with encouragement is "You've Got This!" Sometimes, it's a challenge for me to believe it, but having found a doctor that I can completely trust in her plan to make me well, helps me to truly believe that YES, 

And now, I will practice my patience as we await the next step. Hopefully, I only have to practice until Monday. 
"Patience is the calm acceptance that things can happen in a different order than the one you have in mind."

Milestones...

I think most of us are familiar with the word milestone, especially those of us with children.  As new parents we anxiously await for our children to conquer the next big thing.  Smiling, rolling over, eating solids, crawling, walking, and talking are all tasks we check off our mental list of our childrens' achievements.  Some of us panic if our child is at the latter end of development, others are perfectly content if their child is a late bloomer.  Regardless, I think it goes without saying that we all want our children to become the best versions of themselves.   

"Life isn't a matter of milestones, but of moments."

Rose Kennedy

As a survivor of the Big C, I've noticed that there is a process in the healing after being diagnosed and treated for cancer. And, like children reaching their milestones, all of us survivors do not walk through this journey in the same manner. 

I often become frustrated with myself because it seems I should be reaching "milestones" sooner, that I should be able to bounce back to the same person I was B.C. (before cancer).  The truth is, I will never be the same and although I know this to be true, it's often hard to walk this unfamiliar path.  

Throughout my treatments, when I would visit any doctor's office, I would take someone with me.   I soon learned that the anxiety that would take over my body could be lessened just by having someone with me, even when that person did not say a word.  

It's been 2 1/2 years since the Big C invasion, and the doctor's visits are fewer.  There is more time in between and more time for me to feel like a "normal" person once again.  I'm slowly finding my new normal and doing my best to enjoy my life without the constant worry about what's to come.  

I reached a milestone the other day when I went for a follow up at my radiation oncologist's office by myself.  I anticipated that the visit would be quick and without any surprises, so I braved the task on my own.  Although the visit was routine and all was well, I did end up waiting for 45 minutes, 35 of those minutes was in a hospital gown in the office.  After 25 of those minutes, the lump in my throat got a little too big for my own handling...I texted my BFF while in the midst of taking deep cleansing breaths and telling myself that all was well.  Sending pictures of myself in the ugly johnny helped to calm my anxieties and within a few minutes, the doctor had come in.  She performed a thorough exam and said everything looked great, well "lovely" was actually the word she used.  

It's when ordinary people rise above the expectations and seize the opportunity that milestones truly are reached.

Mike Huckabee

Admittedly, I was a bit disappointed with myself that I couldn't handle the visit completely on my own, but then I realized how blessed I am to have an enormous support system and they're (literally) available right at my fingertips.  

There are some things I know I am not ready to conquer on my own just yet.  So later today, when I head to my annual mammogram appointment, I'll take my mom with me.  Just knowing she is there will help me to get through it without increasing the anxiety level to a point where I can't handle it.  

One thing (among the many) the Big C has taught me is that it's ok to ask for help and to lean on others.  I prefer to be independent and do things on my own. But sometimes reaching those "milestones" is a heck of a lot easier when someone is right my side.

And another thing I've learned is that hospital gowns are drab and boring and really should be made in more cheerful, bright colors.

My path has not been determined. I shall have more experiences and pass many more milestones.

Agnetha Faltskog

UPDATE:  My mammogram was normal...it was a good day!

Check yourself...

So...shortly after I was finished with my radiation treatments, I started getting a little bonkers about doing breast self-exams.  No more treatments and doctor's visits meant I was responsible for making sure everything was A-ok... too much responsibility for me.  I started getting a little ridiculous, checking every single day when I was in the shower. I was beginning to drive myself batty, because basically everything felt like a lump.  Even though I know what a real cancer tumor feels like, I still got that panicked feeling when I felt something a little different than the previous time.

And then, my radiation doctor, actually called my radiation oncologist (I just looked that up because I never knew exactly what her title was), recommended that I just pick the first day of each month to do a self-exam.  Phew, what a relief!  Seems so completely simple and obvious.... really, I could have come up with that myself.  Especially since that's been the recommendation since I started doing self-exams.  But, I didn't remember and I certainly didn't think about it myself.  We will just blame it on the ole chemo brain; yes, I will continue to use that as my excuse for

quite some time.

Anyway, now on the first of each month, I take a couple deep breaths and do a thorough self-exam.  It basically puts a lump in my throat every time, but after I check, I'm good for another month.  And, guess what?  This month I actually forgot to do it on the 1st and did it on the 2nd.  I thought that was good because it means I'm not thinking about it as much...right?

If you're not familiar with how to do a self-exam, look here.  I know I was hesitant to do them in the past because I really didn't know what I was looking for and I didn't want to alarm myself by constantly feeling things.  However, if you get to know your own body and understand what things are supposed to feel like, it would probably be more likely for you to identify a potential issue more easily.  Although I didn't intentionally find my lump, I knew, without a doubt, that it didn't belong there... 

When I started looking for links for self-exams, I came across this website that actually has parties to help educate and promote self-exams.  Hmmmmm, I'm not sure I would feel comfortable hosting or attending one of these parties, but each year since they started, they have educated more and more people, so two thumbs up to that.  Go to the site and check out the video.

Knowledge of the self is the mother of all knowledge. So it is incumbent on me to know my self, to know it completely, to know its minutiae, its characteristics, its subtleties, and its very atoms.

Khalil Gibran

Messes, an MRI, and a New Day

The washing machine and dryer ran almost continuously yesterday...we had a sick Little Miss.  I went to kiss her goodnight on Monday before going to bed and found her sound asleep in a puddle of yuck; she was actually mad that I woke her up.  After moving her and cleaning her up, I went to survey the damage...yuck EVERYWHERE...certainly not what I expected to be doing at midnight.  We both slept (or tried to) on the couch for the rest of the night and yesterday she barely moved from her spot all day...my poor baby.  Ninety-nine percent of the time I think that I'd like more kids and then when they're sick, I think two is plenty.  Little Miss started perking up yesterday afternoon and her Pepere's homemade soup really did the trick...she actually woke up this morning and that is what she wanted to eat...thanks Dad!  Thankfully, she is pretty much herself today and I am so grateful that she is a healthy kid who can fight these random viruses and illnesses and be completely fine a couple of days later.  Some Mom's and Dad's do not have that...

I also had my annual MRI yesterday.  I was definitely not looking forward to going and so, I'm glad it's over.  I'll have the results (which will be fine) in a few days.   I had forgotten how insanely loud an MRI is, filled with various obnoxious noises that almost become somewhat soothing (or deafening) when they are repeated for any length of time.  The entire thing takes 20 minutes while I lay face down...for that 20 minutes, it is quiet for about 30 seconds...well, not quiet, I could hear Nora Jones soothing voice in my headphones.

Here I am before the MRI in my heated johnny...isn't it pretty?  It's a lot better than my prison garb from radiation...remember that?

And, here I am after my scan with lovely marks all over my forehead and nice poofy hair.  I hope you realize I wouldn't show these photos to just anyone...consider yourselves friends :)

Today I am grateful to be able to start fresh...it's a new day.

"When a new day begins, dare to smile gratefully. "

Steve Maraboli

More FAQ's...

Is the cancer gone?

Well, actually, the cancer was gone when I had my surgery last January.  I'm one year cancer free on January 31st.    If you've been following my blog for a while, you may remember my Zipadeedoodah post way back when, when I found out my body scans were clear from any cancer in the rest of my body.  That, my friends, was a good day!

Why then did you have to have chemo?

The chemo really was an insurance measure.  In my case, there was not question about whether all the cancer was gone, but would it show up somewhere else?  Because I had it in one lymph node, those microscopic Big C cells may have been lurking somewhere else.    Having chemo (and radiation) cut my numbers in half.

What do you do now? How are you monitored?

I will continue to have a mammogram and MRI one time per year on my remaining breast.  Each test will be 6 months apart.  For right now, I am also seeing a doctor every 3 months for monitoring.  It is not recommended that I have full body scans, as there has been no evidence that this could help with the treatment of cancer reoccurrence.  The radiation could actually cause more harm than good.

I will end this by saying that my calculated estimate (when all the stats are put into the computer) for NEVER getting the Big C again is 85%.   This is how I have to look at the number, because really, they're only numbers and thinking about them won't make one bit of difference.

I accept reality and dare not question it. 

Walt Whitman 

Now What..

So, this list is complete...

Now what?

I think it's time to make a new list.

I kind of have a lot of thoughts on this, and I'll get to it in my next post.    

“No, this is not the beginning of a new chapter in my life; this is the beginning of a new book! That first book is already closed, ended, and tossed into the seas; this new book is newly opened, has just begun! Look, it is the first page! And it is a beautiful one!” 
― C. JoyBell C.

32 second boost

Websters.com defines boost as 

"to increase; raise"

In terms of radiation therapy, it means this:

"A Little Extra At The End of Radiation

A radiation boost is one or more extra treatments, given at a higher dose than routine treatments, and targeted at the tumor bed. This extra dose covers a small area and affects the tissue where cancer is most likely to return. Radiation boost treatments are given after the regular sessions of radiation are complete. Women who are 40 years old or younger at time of treatment get the most benefit from a radiation boost, but patients of all ages will have a lower risk of recurrence if they receive a booster treatment."

SOURCE

I completed my 6 weeks of routine treatments on Friday, and today I started my boost.  It lasted for 32 seconds. I feel a bit like an artist's canvas during these boost treatments because the therapists have to mark up the area and trace a template with marker.  It's lovely...anyone for connect the dots?  I guess it actually is lovely, because without the artwork, they wouldn't have the accuracy in treating me...

I have 6 days left, and I will be finished with my radiation treatments.  Surprisingly, this part of my journey has gone by very quickly.  My skin is red and sore, but things have been  manageable and the redness didn't really start until several weeks into my treatments.  So, my checklist for treatment is almost complete....

"Nothing builds self-esteem and self-confidence like accomplishment."

-Thomas Carlyle

Halfway...

This week I will hit the halfway point in my radiation therapy...whoop, whoop. Things are moving along (I feel the need to whisper that comment...) and the light at the end of the tunnel is getting just a bit brighter with each passing day.   However, I did think that by this point, I would have been upgraded to a better gown.

I think "nursing staff will change gowns on the appropriate day !!!!!!!", means after you're finished with your last day of therapy...so misleading.

Believe you can and you're halfway there. Theodore Roosevelt 

Day 2

Today was day 2 of radiation and here is what I have learned so far...

-The total appointment takes about 30 minutes.

-I must lie down perfectly still with my head turned to the left and my right arm up in some shackles holder thingy.

-The tech will most likely have to remind me every time to uncross my legs (it's such a habit).

-I don't feel anything.

-It is not that noisy.  Today I had a different machine and it was slightly louder.

-The total time I actually get the radiation is about 1 minute (yes, one!)  Today I counted, and plan on doing the same tomorrow.  Most of the time is spent lining me up to be in the perfect position and checking and double checking-I like that.

-I probably will not start seeing any topical effects of the treatment for 2-3 weeks.  

-The fatigue may not set in at all and if it does, generally it will be towards the latter part of the treatment.

-I will see the doctor and have blood drawn once a week.

-Not everyone has a drab color jumpsuit hospital gown.  (There is me, #32, on the upper left)

 -It is called a gown because it almost hits the floor.  Maybe I could dress this baby up with some heels.

 -Someone is VERY!!!!!!!! serious about the cubby system to reuse the gowns.

"Experience: that most brutal of teachers. But you learn, my God do you learn. "
C. S. Lewis 

#32

The arrival time for my radiation appointment was 8:15...might as well get the fun over with early in the morning.  I actually didn't have any radiation today, but they confirmed my measurements to see if they had to make any adjustments.  I had to stay very still while they did this for a good 40 minutes...I'm pretty sure I almost dozed off or was in some other world because when S, the tech came back in, she startled me and I almost pooped my pants.  

When I first arrived this morning, I was greeted by S and she directed me to the dressing room where I was given my very own gown with a #32 on it.  Because of the gown's drab color and the number assigned to me, I started to feel a bit like an inmate.  Being perfectly still in an unnatural position with my arm up added to this feeling.

Why are the gowns so drab?....yuck!  A little color never hurt anyone.  Actually, I think some of the gowns are more colorful.  I'm going to have to scope out the situation tomorrow.  Too bad this is my gown for the next 35 treatments.  Do you think it would be too much to ask for a nicer one?  Maybe I can earn one for good behavior.

There is no greater hell than to be a prisoner of fear.Ben Jonson

D-O-N-E....whoop, whoop!

So folks, I'm officially D-O-N-E with my cleanse...whoop, whoop.  There are so many things that came along with this process that I will not miss...anxiety, nausea, fatigue and medicines to counteract the side effects to name a few.  Oh, and who can forget about the hair loss too.  

Actually, what initially was one of the most anxiety provoking side effects turned out to be one of the easiest things to deal with.  A hairless body turns out to be pretty low maintenance....I will miss that part of it.  I'm predicting our water usage will probably increase with the growth of my hair though; right now I can pretty much take a shower in 2 minutes.   As I said, low maintenance.   The weather really has not been all that conducive for wearing hats or kerchiefs, especially when you sweat like a pig (as I have been lately-one more wacky side effect), so I will be pleased to have the hair back on my head.  This week, though, it's still falling out; it's hard to believe there is anything left to fall out, but there is.

So, onto the next phase...7 weeks of 5 days/week radiation.   That would be 35 days folks...yes, 35 days....piece of cake. ;p  I also meet with Dr. S, my oncologist in 4 weeks (well, 3 weeks now) to discuss my further treatment which includes taking an oral medication for the next 5 years; this will further reduce my odds of re-occurrence..AMEN to that!  

Dr. S said it could be several months before I feel completely "normal"...what the heck does that mean anyway?  For now, I'm enjoying the fact that I am on my way to a full recovery from this lovely phase I liked to refer to as my cleanse.  

Thank you all for celebrating this moment along with me.

"Life isn't a matter of milestones, but of moments."Rose Kennedy