Thankfulness

Seeing as Thanksgiving is only a few days away, it seemed a good time to blog.  I'm not going to go through everything I am thankful for, as that would take days and days and be way too long to read.  I'll instead tell you about the three things I am most thankful for.  First, Jesus.  He is my savior and my God and I could never have survived the last 2 and a half years without Him.  Second- my family.  My husband and my children are everything to me.  My parents and my in-laws are the most amazing examples of love and care. Third- MY CANCER.  Yep, you read that right.  I am so thankful for the experiences I have gone through.  I am a different, better person.  I appreciate life so much more.  I am all about experiences and adventure and not wasting time.  These are all lessons cancer taught me.

Yes, I still deal with fear, like I wrote about last time.  I still have one more surgery to go on Dec. 20th, and right now I'm getting IV treatments for iron deficiency.  I'm still tired a lot.  I have no abdominal strength due to my surgery last June. I'm getting tired of mentioning my neuropathy, so I won't even bring it up. ;)

But all those annoyances are no big deal compared to the change in me that has made me a better version of myself.  I am SO thankful God chose to refine me in this way.  Life is so much richer, so much more meaningful, and so much brighter.

Two years ago, I am not sure I would ever be able to say these things.  Today, I'll tell anyone who will listen- I am thankful for cancer!!

What are you thankful for this season?  Leave me a comment so I can rejoice with you!

Robin

Breast Cancer Awareness Month

As if I needed to be made aware of breast cancer. :)  This month has got me thinking a lot about my journey, reflecting back and looking ahead.  I have come so far, but once you start on a cancer journey, it never ends.  This is something I think people do not understand.  Once treatment is over, to the surrounding world, it seems like you've beat cancer and life goes back to normal.  Perhaps we start a new normal, but things never go back to the way they were before.  I have side effects that will never go away.  I will probably never get complete feeling back in my feet or fingertips. I still get fatigued pretty easily, and chemo brain still plagues me. It is unendingly frustrating to not be able to come up with words, especially as a person who uses words for her living.  My family and my students are so patient and gracious.  They only laugh at me sometimes.  :)  Older people tend to downplay this when they tell me they have the same problem.  No, you don't.  I am only 40 years old and I could be dealing with this for years to come, if not forever.  I shouldn't have the brain of a 65 or 70 year old.  I should be at my peak right now.  I know people are trying to be empathetic, and I do appreciate it, really.  But this is why I write this blog- I want people to really understand what it is like to go through cancer.  I had absolutely no idea before I was diagnosed.  You can't understand if no one tells you.  So here I am.

I also blog because it helps me deal with my own emotions.  If you have followed this blog, you've read about my fears, my struggles, my triumphs.  I am so happy to have people share those things with me.  I'm back again also because I am finding myself with lots to deal with right now.

One great thing is the LIVESTRONG program at the Y.  I went through it last spring, and one of the personal trainers offered to work with any of us who wanted to continue.  So now on Tuesday nights I get to see my 'cancer buddies' Danelle and Lynn.  We are all young breast cancer survivors.  It is hard to explain the connection survivors have.  I think it is kind of like being in the military- you meet another military person and you connect because you both know what it is like.  I love these two ladies and am so thankful for them. Just being able to talk to other survivors helps ease my fears a little.

I know two women who were recently diagnosed with a recurrence.  One of them was first diagnosed 15 years ago.  When I hear these things, I literally cannot breathe.  It terrifies me.  I want to know, because I want to pray and I want to help.  But it freezes me.  The fear is palpable- it surrounds me and squeezes me and takes my breath away.  I have to fight through that fear and cry out to God to rescue me from it.  I have to force myself to remember that HE IS ALREADY THERE.  He knows if I am going to have cancer again.  And if I do, He will use it for His glory, of that I am sure.

Some medical professionals no longer say 'if you recur,'  they say 'when.'  No one will give me a straight answer when I ask what my chances of recurrence are, because no one can really know.  I had a very aggressive form of cancer, I am young, I had to delay treatment several times, and it was already recurring when I had my mastectomy.  That surgery mostly took care of that, but breast cancer recurs in the lungs, liver, bone, and brain.  I broke my toe a couple weeks ago, and I immediately go to, "Maybe it broke because I have cancer in my bones."  I have lost my voice and had a really bad cough for a couple days, and I immediately think, "Maybe the cancer is in my lungs."  I have been told this is very normal behavior for a survivor.

God taught me so much through treatment.  I have (mostly) let go of my need for control.  I am a nicer, more patient, more prayerful person.  I like myself better.  I am getting a Master's Degree in Theology.  I am exercising and eating relatively well.  (As much as I can in a house of teenage boys!)  So now it is time for a new lesson.  Now I have to learn how to deal with the fear.

I know this journey is drawing me closer to Christ and shaping me to be more like Him.  I would not trade that for anything.  But it is HARD.  And it will always be hard.  But things that are worthwhile are worth fighting for.  If  you are dealing with fear, I understand.  We need to turn back to the One who says over and over, "Fear not!"

You might hear from me again soon, or it might be awhile.  I have another surgery coming up in December, and that should finally end this part of the journey.  What a Christmas present!

One more round

Well, here we are almost exactly two years from the start of this journey.  On May 19th, 2014, I was diagnosed with breast cancer.  In March of 2015, I had a double mastectomy due to having the BRCA-1 gene- the gene that greatly increases the risk for breast and ovarian cancer.  In December of 2015, I had a salpingo-oompherectomy (removal of Fallopian tubes and ovaries).  Now it is time to finish my reconstruction.  On Wednesday, June 1st, 2016, I will have a combination DIEP and free TRAM flap procedure done to reconstruct my breasts with my own tissue taken from my tummy. It is a huge procedure, taking between 12-14 hours with 2-5 days in hospital afterward, and then 6-8 weeks not lifting anything and taking it easy.  I've chosen this because it is the best option for a good outcome for someone my age.

My emotions are all over the place.  I am really excited to have this done and be able to buy a whole new wardrobe for my new shape.  I am also scared to death.  It will be a long recovery that I am not at all looking forward to, but I'm not really afraid of that-I have my eyes open and I know what is coming. (sort of).  No, I'm so afraid that Dr. Tran will get in there and find more cancer.  A mastectomy cannot remove all breast tissue, only most.  When they went in for the mastectomy, the cancer was already returning.  What if it is still there?  The last couple of days it has taken a great deal of prayer to not succumb to panic.  I find myself wondering if I could go through all this again.  And then I realize that, yes, I could.  Because it isn't me going through it, it is God leading me through it, for His purpose and plan.  I won't pretend to be super spiritual woman- I'm still afraid.  But that fear is tempered by the knowledge of God's grace and mercy and goodness.

I told Darrin not long ago that I truly believe that having cancer was the third best thing that has ever happened to me.  The first being salvation, the second marrying Darrin.  I am a different person than I was 2 years ago.  I am less controlling, more patient, more deliberate, and more adventurous.  I have a deeper walk with the Lord and I wouldn't trade that for anything.  If He chooses to have me go through it again, then there must be more for me to learn.  For all of us to learn, because you all go through this with me.  Whatever the outcome of my surgery on Wednesday, I know that God is already on the other side of it.  He knows what is coming, so I don't have to.  I just have to trust that it will be the best thing for me.

I am sad to be losing yet another summer.  We went on a bike ride today and it was glorious.  Being outside is my favorite thing- camping, swimming, biking, hiking, canoeing- I love it all so much.  I am not looking forward to lots of time recovering.  I'm hoping that by the end of July I'll be able to get out some.  I'm really hoping that this will be the end of this journey.  I know there will be one or two more small surgeries to make sure everything is right, but they won't be too big a deal.  It seems like the end is in sight, but there are still some twists and turns that make it hard to know.  But here is what I do know- HE IS ALREADY THERE!!!

One Year Ago

One year ago right now, I could barely tie my own shoes.

One year ago right now, I could not feel my feet or my fingers at all.

One year ago right now, I could hardly walk without assistance.

One year ago right now, nothing tasted good.

One year ago right now, I often could barely remember my husband's name, let alone facts about world history.

One year ago right now, I spent every Thursday in a big purple chair with poisons pumping into my body.

One year ago right now, I came home from school everyday and slept for at least 2 hours.

One year ago right now, I had given up playing drums for the foreseeable future.

One year ago right now, I had no idea I was BRCA-1 positive.

Today, I put on my favorite bright purple Converse and tied them myself.

Today, I still can't feel my feet, but I can feel my fingers enough to type well again.

Today, I actually jogged down a hallway. ( I was late to a Dr. appointment)

Today, I am looking forward to my blueberry yogurt and grapenuts at lunch time.

Today, I still have trouble with words and memory sometimes, but I'm competently teaching two world history classes and often refer to my husband by name.

Today, it is Thursday, and though I had an early morning Dr. appointment, I am at school and accomplishing lots of tasks.  I'm still taking several medications, but none of them are poisons!

Today, I'll head straight from school to my tai chi class at the Cancer Center.

Today, I'm playing on two different worship teams and have a practice at 8:30 this Saturday morning.

Today, I know about my BRCA-1 status and am actively dealing with the implications.

What a difference a year makes!!

Finally- an update!!

Hello,all.  I realized that it has been quite awhile since I sent out an update about my health.  Mostly that is because I've been doing great!   I am 7 months cancer free and enjoying every minute of it.  I think back to where I was a year ago and marvel at God's goodness and provision.  My journey is far from over, though.  Here's what's happening now.  

I still can't really feel my fingers or feet.  It's really, really annoying.  It is much better than it was in my fingers, but my feet are still pretty bad.  I'm doing acupuncture to try to stimulate nerve growth, but it just takes a really long time for nerves to regenerate.  It is possible feeling will never fully return.

Some of my medications haven't been working correctly, so I am scheduled to have a salpingo- oompherectomy (fallopian tubes and ovaries removed) on Dec. 9th. We like to call it an oompa-loomparectomy.  This is necessary because of my BRCA-1 positive status.  My risk for ovarian cancer is increased, so this is a preventative measure.  It is an outpatient procedure that will be done at St. Luke's.  Recovery is only a week or two.  We were hoping to combine it with reconstruction, but my oncologist and ob-gyn both want it done sooner since my meds aren't doing their job. 

I'm still planning on finishing my reconstruction in May up at Mayo Clinic.  I need to lose about 15 more pounds before that surgery.  It will include 4-6 days in the hospital and then 8-10 weeks to fully recover.  It's a huge surgery, but we really think it is the best option given my age.  The procedure is known as the 'gold standard' in reconstruction. 

When my feet and balance were much worse last winter and spring, I fell several times.  At some point, one of those falls caused a tear in my right rotator cuff.  Today, one of my doctors gave me a second injection to try to ease the symptoms.  I can have one more of these shots, but then it will be time to surgically fix the problem.   You can imagine my excitement when I learned I would need yet another surgery.  I'm going to try to hold off for a year.  

I told Darrin yesterday that it was hard to believe that a two centimeter large object could cause so many problems for so long.  It is kind of like sin, I think.  What we think is a small thing can cause problems for years hence if we don't root it out.  Even once the sin is forgiven and gone, we still have to deal with consequences.  it really is like a cancer. 

On a really positive, exciting note, Darrin and I are headed to Turkey to visit Amy and Dennis Fulkerson!!  We leave on Nov. 18th and will be back Dec. 2nd.  There is an international shadow puppet festival in Bursa (where Amy and Den live) during that time.  We'll be in Istanbul for a couple days, Bursa for the festival, and then to Iznik (Smyrna), Pergamum, Troy, and Gallipoli.  We are SO excited.  It is our gift to ourselves for surviving the last year and a half.   I haven't been out of the country since 2008, and I am itching to go!

Thank you so much for walking this journey with me and my family.  Your prayers and encouragement have made such a difference.  

Grief

Grief is such a crazy word.  It means so many things to so many people.  It can be used as a remonstrance-  " don't give me grief."  It has been stereotyped in literature, "the grieving widow."  However, one common phrase I haven't decided about yet is, "good grief!"  Is grief good?  It sure doesn't feel like it.  Over the past month I have experienced terrible grief.  Some of you will understand, and others of you will think I'm silly.  But it was very real for me and very painful.  Here is my story.  The first part is a little PG rated.

I grieve the loss of my breasts.  I miss them.  They are gone forever, amputated, removed.  I know eventually they will be fully reconstructed, but they will not be the same.  When I express this to people, I often get the response, "What's the problem?  You'll get new ones and they'll be great!"  They don't understand that I have lost a part of me. The "great new ones"  won't have any feeling or any response.  They will be for aesthetic purposes only.  People don't understand that.  Writing about it even now makes me cry- I'm typing through tears.  It is a LOSS- it's not an opportunity.  I didn't choose this, and I would much prefer to keep the body God gave me.

I'm grieving other things that are gone forever that I can't really write about on this public blog.

While trying to process all this, our beloved cat Magnolia died of kidney failure.  She was 14, and I had had her for 13 years.  Darrin and I took her to the emergency vet, and we had to put her down.  I sobbed so hard I'm sure the whole clinic could hear me.  She was such a loving little cat, and so active- we forgot she was so old, so it was a doubly hard blow.  She comforted me so much after my surgeries.  She absolutely adored Andy- she always followed him around and he had to do an elaborate scheme to get into his room at night without her.  She used to meet us at the door every time we came home. She was so precious to all of us.  I told Darrin I didn't think I could bear it if one of the cats died while I was dealing with cancer. She died one year to the day that I started chemo.   We had a funeral for her and Darrin read from the Book of Common Prayer.  We all cried together.  We put a little stone marker and planted some flowers on her grave.  She was part of our family, and now she is gone.

I don't know why God is choosing to allow all this grief.  It is sometimes overwhelming.  Sometimes it causes panic attacks.  Sometimes I think I'll never get over it, and other days I do great.

So- is grief 'good'?  I think so, actually.  It is a mechanism God has given us to process events and loss in our lives.  There are stages of grief, and I find myself moving between them regularly.  But there is the key word- moving.  I'm not standing still- mired in my grief.  I'm moving through it.  Sometimes I feel like I am crawling through it, but I'm still moving.  It hurts like heck, but it is a healing hurt, like debriding a wound.  Or like Eustace in The Voyage of the Dawn Treader,  peeling away the dragon skin to reveal the raw, new Eustace.  Through all this I think there will be a new, raw Robin- one who has survived, and will thrive again.  Because God is good, and that is what He does.

Today is D-Day

No, it is not June 6th, the Day of Days.  It is diagnosis day.  At 3:07 pm, exactly one year ago, I got the call that I have 'a little cancer there.'  Initially, we all thought I would be completely done with treatment by the end of the summer.  Then, .67cm of cancer cells decided to take a trip into a lymph node.  That changed everything.  We went from 4 chemo treatments to 16, and I got every side effect in the book and 5 hospital stays, one 12 days long.  I finally finished chemo on Dec. 4th.  As we were getting ready to start radiation, we discovered I am BRCA-1 positive- the gene for breast and ovarian cancer.  So, instead of radiation, I had a double mastectomy, and am going through a medical oompherectomy (menopause).  I still have one major surgery to finish reconstruction and remove my ovaries and fallopian tubes, and then probably a few little ones to get everything adjusted.  I have to wear a compression sleeve for probably the rest of my life to fight lymphedema, swelling caused by the removal of 27 lymph nodes.  I currently have an infection that will probably need IV antibiotics to get under control, and I'm having an MRI on Wednesday to see what is wrong with my shoulder.

I'm so tired there are  days I can barely function, falling asleep at my desk, sometimes during class.  Our family is getting so busy we are rarely all home together and I miss them.  Our basement flooded and we have to put in a sump pump, so for the last month we've lost a third of our living space.  Shiloh graduates this weekend, and I hope I'll be able to function properly through the day.  I think I am fighting depression, as I tend to cry very easily.  This is not what I expected D-Day to be.  I was hoping it would be a wonderful celebration of being cancer free and winning the war.  Instead, I am still right in the thick of it.

HOWEVER- I have won a lot of battles.  I am not the same woman I was a year ago.  I am more thoughtful(thinking more deeply), I am more compassionate towards  others' plights, I am much quicker to pray for people in need, I am generally quieter.  I look at the world a little differently and savor it a little more.  I have been abundantly blessed, so I want to return those blessings to people around me.  Most of all- I have started to be able to let go of control.  Time and again I have planned something just to have it all fall apart because I would get sick.  I am learning that I have no control over anything.  God is the one who orders our days. I used to have to know every detail about everything.  Now it isn't that I don't care, but I realize there are other people who can handle things and it doesn't have to be me.  This was a very freeing lesson, and I'm sorry it took me so long to learn.  In fact, I'm still learning it.  But I'm getting a lot better. :)

Now I am so overcome with fatigue I am falling asleep typing, so I will close, and continue to count down to 3:07 pm, the moment that changed my world.