Here I go!

Well, it has been 8 months since my surgery in October, and next week I will be going in for  my reconstruction surgery.  Tuesday, July 14th,  I will be admitted to Walter Reed and should actually come home later that night.  I have had an uncomfortable tissue expander buried beneath my chest wall muscle all these months, and now that my chemo treatments are finished and I am not as prone to infection, it is time for it to be replaced.

I spent the entire day at the hospital on Wednesday this week, first in the chemo ward for my infusion, then to meet with my surgeon and pre-op team including anesthesia.  Going through the steps preparing for surgery again takes my thoughts back to last year and all of the horrible emotions I was going through then.  I suppose that is why I can’t get very excited about this next step in my recovery, because it is associated with many bad, traumatic memories. I just want it to be over and sitting there in the surgeon’s office I just wished I could get up and run out of the room and never return.  But this, like the last surgery, is something I must do, and hopefully the one good thing about it, in the end, is that I will be more comfortable.  Expected recovery time is a couple of weeks to a few weeks.  I have hesitated for months about elaborating here about what type of surgery I am having or have had (”T.M.I.” as my kids may call it!  Too much information) but I think it is important that people realize just what breast cancer does to a woman and that it can have a profound affect on her body, her self-esteem, her identity, her relationship and her future.  All nerves from her collar bone to her rig cage are severed when the breast tissue is removed.  She will never have feeling in that skin again.  These effects last a lifetime and don’t end once many years have passed.  She may seem normal on the outside but psychologically she suffers a tremendous loss.

I am experiencing some tightening of the tendon that runs from my arm pit to the wrist, a result of several lymph nodes being removed last October for biopsy.  I am now doing daily physical therapy exercises to hopefully loosen things up and prevent scar tissue from building.  The tingling feeling in my hands and fingers is lessening, and my fingernails are looking healthier, although they are still coming away from the nail bed.  After three rounds of anti-biotics the lesions on the back of my neck are healed.  The side effects from my current therapy are a constant drippy nose for the entire duration of a year ( I carry Kleenex with me EVERYWHERE), and some fatigue the couple of days after treatment.

My hair is coming in s-l-o-w-l-y, more slowly than I would like.  This is still by far one of the hardest aspects of this journey and one I can’t wait to put behind me.  I still cannot bear the thought of going out the front door without a scarf or wig on.  Even around the house I do not go all-natural since my dog doesn’t recognize me and follows me around everywhere as if I am a stranger, and to be quite honest it is a disturbing site to see yourself in the mirror that way!  1/4 inch per month seems to be the going pace of growth, so in another 6 months I may have enough to style.  I am walking every day and trying to build up my heart strength and stamina.  The infusion drug I am currently on causes heart damage, and I have had a 10% decrease in output function since starting therapy in December.  Pray that this number will stabilize and that I can get through the next 5 months of treatments without further damage.  Please click on the video link below! Enjoy!

‘Til next week..

Love,

Koryn

Breast Cancer Journey 7/10/09
I have created the video above as a photo journal of some of what has happened over the last 8 months.

A New Identity

Emerging from what seems like a fog of sorts, months of treatment, and life put on hold, it is now time to catch up on things like doctor appointments. The details of every day life  have been neglected while I’ve been fighting cancer.  Last week it was time to renew my military i.d.  card at Quantico Marine Base.  I had an appointment so that I wouldn’t have to wait in long lines.  After just a few minutes of sitting in the waiting area, Maria called my name and I stood up and followed her to her desk.  She asked a few questions, asked me to fill out some forms, then she said, “Okay now, sit back and I am going to take your picture”.  Sitting there with my wig on, trying hard to smile naturally, I wondered if she could “tell”.  I wonder all the time if anybody can tell, and of course, they can’t, but I am still very self conscious about not having my natural hair.

Soon she said to me, “I love the highlights in your hair – it’s really pretty!”   “Okay Koryn! Now’s your chance!”, I thought to myself.  So I leaned forward and said to her, “It’s not really my hair – it’s a wig.”  Maria said, “What?”  I said, “This is a wig.  I just finished chemo therapy for breast cancer.”  She couldn’t believe it – first, that I could get cancer so young, and secondly, that a wig could look so natural! Whew!  That made  me feel better.

I could tell she was over 40 years old, so I seized the opportunity once again to tell another woman my story and how she could help prevent herself from suffering my same fate.  I told her not to skip even just one year’s annual mammogram.  Time is NOT on your side – one year could make the difference between being diagnosed early enough to be treated with simple surgery, to allowing the cancer to take over your entire breast and enter your blood stream, threatening your life.  And then I told her to be sure to get the written transcribed mammogram report.

I have made this a mission of mine now, because it could have made the difference for me.  At the top of this web site you will now see a link “Don’t Let It Happen To You”.  I have had some business size cards made with this message on them to hand to any woman whom I come in contact with, and where the subject comes up.   

If this prevents even just one woman from going through what I have, then sharing my story is all worth it.  I will not sit in silence any more. Maria thanked me that day for reminding her to get her over due mammogram and said that meeting me that day was her wake up call.

My trip to get a new ID card that day led to something positive.  A new mission, empowering women, bringing awareness.

Our Hope Endures

Today was my visit to Walter Reed for another infusion and appointment to meet with an oncologist, Dr. Gallagher, who is the attending physician for the doctor I have been under since January.  Tim and I met with him for over an hour with many questions that ranged from how long am I suppose to continue these infusions to what can expect my recurrence risk to be?  My other doctor had recommended infusions through April 2010, but as I suspected that is not correct and I will be finished in mid December.   Yeah! My other doctor had also recommended I have my port removed due to the clotting risks associated with the oral chemo therapy I will be going on for the next  5 years, and this doctor said I do not have to have the port removed.  I was very relieved to hear that since I have another 9 infusions to go and would have otherwise had to have a new IV started each time.   Chemo therapy has thrown me into premature menopause, “chemopause”, as they call it.  Along with that comes some uncomfortable side effects like waking during the night with sweating, and hot flashes all hours of the day.  We discussed some natural remedies I can take to alleviate that, thank goodness!  So it was a positive day and I was happy to get a second opinion on some of the treatment recommendations. Prognosis is very good, and by following the plan of starving off cancer cells for the next 5 years, I have a 86% chance over ten years that I will remain cancer free.

I have cut my fingernails extremely short now, and they are gradually growing out along with the rotting parts.  The doctor said it takes about 3 or 4 months before the toxic chemo drugs leave my system so it will still be some time before the nails and hair grow at a normal pace.  Right now is it soooo slow!  My hair is back to the length of a fuzzy – marine style cut.  (So, as you might guess, this is NOT my real hair here!)  After my infusion 3 weeks ago I had headaches for 5 days and extreme fatigue the day following so I am hoping those symptoms won’t return this week.

While driving to the hospital today I changed the news radio station to a Christian music station and this song (below) came on the radio.  Its words were just what I needed today, since each and every time I go to the hospital now I get a sick feeling in my stomach.  (Once again someone is watching over me, putting just the right people and even songs in my path to light my way!) I start to tear up in my eyes at the thought of yet another day there in the ward.  It is not a happy place to go to as so many sick and injured people are there, and now that I feel so good I just don’t “belong”.  Yet my hope endures!!  Hope is much more than optimism, as the song says.

Hebrews 11:1 says, “Now FAITH is the substance of things HOPED for, the evidence of things unseen.”

Managing Side Effects

With the end of toxic chemo treatments comes the aftermath of side effects.  Yes, there are lasting side effects which are more bothersome than anything else.  Every night my fingers go numb, like they are sleeping.  Neuropathy is the technical term for it, and is a common side effect of chemo therapy drugs.  I experienced just a little of it while under active treatment, but it was more of a tingling sensation then.  Now it is really annoying and awakens me, like when your ankle or foot falls asleep if you sit on it too long.   Once I am upright for a while it seems to go away, but even this morning it is continuing hours after I’ve awakened.  One survivor told me she still has it 14 months later!   So some nights I end up sleeping sitting up on the couch just to find feeling once again circulating down my arms.  Let’s hope it is temporary!  I don’t know if that has anything to do with the fingernails, but mine  are hanging on for dear life and I have managed to fend off infection by keeping anti-bacterial ointment underneath the upper parts that have peeled away from the nail bed.  Fortunately they aren’t hurting anymore.  A  fellow chemo friend developed MRSA infection with hers, so I took notice and began treating them at the first sign of  infection, which was pretty gross (and scary)!  If you don’t want to see them DON’T CLICK!  Here is a photo of what they looked like about three weeks ago, and here is a photo of what they looked like a couple of weeks ago and a photo of what they look like now.   I won’t even take a photo of my toe nail…I simply  have covered it up with nail polish.  It is half on and half off.

As new hair follicles grow on my head, so do the complications of my body trying to re-create all of the missing follicles.  I wonder if God has to change his record book every day where my name is written?!  You know it says in the Bible that God knows the numbers of hairs on our heads!  Well, my number must be changing almost daily!  If you recall, I had a follicular infection at the nape of my neck about 3 months ago that landed me in the emergency room.   This week another one had me pleading for relief from my general doctor.  She prescribed an oral antibiotic and told me to return the next day to have it lanced.  So yesterday I went back, and I gladly let her numb me up and drain it but it didn’t bring me much relief!  (Not yet, anyway.)  Again, DON’T CLICK if you don’t want to see…This is a photo of my neck today.  The worst one is hidden under that fresh new hair you see, but if you look closely you can see it…that is the one she lanced… and the reddish indentation  to the right is just the scar left behind from the one I had in March.  Good news is that there IS fresh new hair – now only if I could get it to grow FASTER!  What you see under my scarf is brown, but what is coming in on the top of my head is gray! No fair!  Clairol Nice – And Easy and I are going to become very good friends as soon as there is hair enough to style!

I have an appointment to meet with the head of the oncology department next week.  I asked to speak with him about my specific type of breast cancer and the treatment I am undergoing through December.  I expressed that I haven’t felt like my oncologist knew much about Her2Neu +++ positive breast cancers (also known as metastatic breast cancer) , and would like a second opinion since he is now talking about treatment through April.  This goes against everything I am reading on the protocol for this drug (Herceptin).  The head of the department told me that he was probably the best expert on this topic.  At any rate, I feel like the more seek and learn, the better I can make choices about treatment and feel as though I am getting solid information.  I just haven’t felt that with my doctor thus far.  Remember that oncologists treat all forms and types of cancers, and each cancer has a sub set of characteristics all its own.  The drug lists and protocols are varied and wide.  I just don’t want to let anything slip through the cracks.  I do spend probably an inordinate amount of time reading articles and drug studies online!   I guess this is giving me the education of a lifetime!  When can I graduate?

The Great Outdoors

Days like these are hard to come by! Sun shining, not humid (yet), warm but not hot, and nothing on the calendar…let’s go!  Tim and I spent the afternoon out on the Occoquan River, kayaking and enjoying the peace and serenity of the outdoors, chasing blue heron birds, and just reflecting on where we are in life right now.  All is good and getting better!  We are always amazed that this little slice of Heaven is just 15 minutes from our house.  And I am feeling so great right now physically, it was just nice to know that it can only go up from where we’ve been the last 8 months!  I have done more physically in the last 4 days than I have in years!  Cycling, walking and boating!

Having received some very sad news from my friend this morning, that she has been diagnosed with cancer for the second time, I am reminded that God’s plan for us is for good and not for destruction.  “‘For I know the plans I have for you,’ says the LORD. ‘They are plans for good and not for disaster, to give you a future and a hope.’” (Jeremiah 29:11) …
I remember reading those words last October and wondering about my future…what it would look like.   It is a struggle to fight the fear that wants to creep into our heads and imagine the worst.  So how do we get past this fear and trust God for those good things He has promised and the future we so desperately seek?

By Faith

 Hebrews 11:1 says: “Now faith is being sure of what we hope for and certain of what we do not see.”

So, though I do not understand God and His ways, I must have faith that He is unfolding His plan just as it is suppose to be.

This faith is a gift, and one I can ask for if I struggle to have it inside. I daily need God’s gift of faith and to believe that my future and that of my dear friend are in His hands. He never brings anything our way that He will not walk through by our side.

New Beginnings

Having cancer has taken many things from me beyond my control.  It has made me vulnerable and helpless at times.  Part of the fight in cancer is to regain something I CAN control, and decide what is right for me. 

I believe everything and every person God brings into my path, in this journey, is His divine intervention.  There are no mistakes with God!  A couple of months ago I met a dynamic woman through my kids’ high school.  She is an 18 month breast cancer survivor and a  shining example of strength and courage to me.  A powerhouse of energy and positive attitude,  I knew I immediately had to know her!  The more we talked about life beyond treatment, I learned from her and other survivors, that lifestyle changes must be made to remain cancer free.  No more free walk in the park, not exercising and eating whatever I wanted to! 

Every study I have read links diet and exercise to lower recurrences or development of all types of cancers.  Even though I have been fortunate to be able to maintian a healthy weight my whole life, and don’t struggle with high blood pressure or diabetes,  which run in my family, my greastest focus NOW is to never go through cancer treatment again.  Ever.  What better time than NOW to seize hold of something within my control while other issues are still out of reach for me (such as getting my hair to grow FASTER)!  I choose what to eat.  I choose where to spend my energies and I choose who I want to become. 

So today, along with my new friend,  bandana on my bald head, I tried a spin (cycling) class at the local gym and guess what?  The instructor is another breast cancer survivor, 8 months further ahead than me, and she has the same oncologist as I do! What are the odds of that?  As I sat on the bike at the back of the room, watching her at the front, with all her enthusiasm and zest for life, tears filled my eyes as I could see light at the end of this dark tunnel of treatment.  I saw that I can raise my head high and smile.  I saw that I can have the body I want to have, or at least one better than what I have now, and that strength will come through hard work.  I have never been one for sweat, in fact I hate exercising, not to mention PAIN!  This would be a very big step for me to take on a lifestyle change like this.  Even two or three times a week of walking around the block would be a huge milestone for me, especially if its hot outside!  But I have to start somewhere, and meeting these two women is like an ah-ha moment for me.  A motivation for change and a new beginning.  Like two angels leading the way, that God placed right in my path when I needed direction.

I’m sure I’ll be barely able to walk tomorrow when I wake up, but in time I hope to feel better and love the body God has given me, glad to be alive.

Pressing on…

Today is June 1st, 8 months since my breast cancer diagnosis.  Sometimes it seems a lifetime ago and sometimes it seems like just yesterday.  Some days I feel I have survived the worst of it and then some days I feel like I am still fighting.  I have met many breast cancer patients and have found that some call themselves ’survivors’  from their date of diagnosis and some from the date of their surgery.  I don’t know when I will call myself a true survivor. All I know is that I don’t feel like one just yet.

Maybe that’s because I am still going through IV infusion treatment, spending the day in the chemo ward every 3 weeks, and maybe that’s because I still have very little hair at all, and my fingernails and toenails are rotting, bleeding, and falling off. ( Gross, I know, but that’s the raw truth.)  I escaped to a movie theater a few days ago and got engrossed in the show, forgetting  for three hours that I had breast cancer, only to go to the restroom after wards and find blood on my shirt from my bleeding fingernail.  I wrap band aids around them and try to keep them on.  “This part is taking too long”, I think to myself,  this part of regaining my body after chemo therapy.  And even the therapy I am getting now, though not as toxic as the last four and a half months, still causes me headaches and fatigue and I am scheduled for nuclear heart scans every 120 days to check for cardiomyopathy, a side effect to the drug Herceptin, which I get every 21 days.

(Tim and me, out to dinner last weekend, with his parents who came to visit from St.Louis)

On a lighter note, though, I was traveling back from California a couple of weeks ago and in the airport magazine/book store the clerk said to me, “I love your hair color! It is really nice with your brown eyes.”  I smiled and then leaned over to her and said, “I have a dirty little secret to tell you”…and then I told her about my wig and breast cancer.

I thought to myself, I could say “thank you” and go about my business, or I could put a face to breast cancer and let people know that it is not your great aunt’s disease anymore.  It is affecting more women than ever before, in staggering numbers and to people whom you never would have suspected.  Many celebrities have hidden it from the public until now.  The risk factors are becoming more widely advertised and discovered by scientists.

I don’t know what my life after breast cancer treatment will look like, but right now it includes a desire  to let people know that finding a cure, though a great hope for us all, is only one piece in a very larger puzzle of finding the cause.  The more I read, the more I see how our society and foods, and lifestyles play a big role. Now if I could only get myself to make some of the changes that will reduce my risk of recurrence such as daily exercise and eating a large diet of fresh fruits and vegetables! I’d better get off this computer now, and put on my walkin’ shoes!!

The Point Of Grace

If you, like me, have been brought to the depths, and if you have, then you know what I mean…a place where you can cry no more, and have no strength left within your being.  It is a dark place, a hard place and a place you never want to stay long.  If you have been there or are there now, then you are at The Point of Grace – the place where only God can lift you out.  I found myself there six months ago when a plan for treatment was not yet in place, and I find myself there now as I try to navigate a road to recovery that isn’t clear.  It’s as if I was placed in a blender and then poured out on the pavement and left to wander, trying to find myself again.  Where is my femininity? What is my purpose in all of this mess? How do I come to a point of acceptance when I am still so angry? Even my fingernails are peeling off now and are painful!

If you feel that way in your life, then you’ll hear these words to this song and know that there is hope and peace waiting for you.  You just have to let God find you there. No hiding from your reality. I heard this song while I was in California visiting my parents. I felt the tears flowing down my cheeks and they streamed like a cleansing river to my soul. Just when I thought I couldn’t cry any more…

California Here I Come!

It’s been more than a week since I last posted.  I’ve been getting ready for my trip out to visit my family in California, and the day has arrived!  I will be gone today through the 20th of May.

For over a week now I have resumed most of my daily activities of running a house to include the grocery shopping, cooking, laundry and upkeep, even though I am still anemic.   They checked my blood levels last week and my white cell counts are normal, so not as susceptible to infection, but the red cell count is still low, causing anemia.  I was also catching up on all the back-ordered jewelry orders that had stacked up and then I put my shop on vacation mode – I plan to resume after June 1st.  That has taken a lot of pressure off of me and freed up some time.

I began my “maintenence” Herceptin dose infusions last week, three times the levels I had been receiving, since they are every 3 weeks now instead of every week.  Tomorrow is the first Wednesday since New Years that I have not had to be at the hospital!  That, in itself,  feels amazing!  The only side effect I have noticed is one my doctor warned me of,  and that is a constant drippy nose accompanied by scabs lining the nostrils.  Hopefully those will subside with time as my body adjusts and I get back some nose hairs.  I don’t go anywhere without my Kleenex!

My oncologist denied my request for a manicure, since one of the nails started lifting from the finger and was oozing.  The bleeding under the nails has continued, but I went ahead and painted over them for my trip since they look pretty ugly.  I just can’t have the soaking and cuticle treatment that a typical manicure includes.  I am keeping them short so they don’t get caught and then pull right off – they are tender and still a little numb.

I shaved my legs for the first time in 6 months too!  California is HOT already and shorts and skirts mean no covering up the stubble that is beginning to return.  Hair is starting to fill in the bald spots on my head, though just grayish colored (ugh) chickadee “fuzz” right now.  I am still sporting a wig when I leave the house, and a scarf or bandanna while staying at home.  I don’t think there will be much swimming pool or beach activity for me this summer!

I signed on to be a “chemo-angel”  to a cancer patient just beginning her chemo treatments….a source of encouragement to someone else and a real place to help me begin recovery as I reach out to  another woman affected by breast cancer.  Channeling my time and energies into helping others will help me from holding my own pity party now that I am going through the post chemo “fall out”.  Nobody warned me of the feelings I would have as I begin to process the emotional after effects of treatment.  And in some respects I feel like I am still IN treatment until the new year, as I go once or twice a month to the chemo room for infusions.  A ‘new normal’, they call it.  All I can say is I just want my ‘old’ normal back, and that is a loss I must grieve over time.  I appreciate your prayers to that end.

‘Til next week!

Koryn

A Long, Long Day

Today started with a drive in the steady rain and rush hour traffic to the E.R. to have my arm looked at.  My left arm, where my port is installed,  has been hurting for 4 days now, a throbbing dull ache and slight swelling…time to check for a blood clot again.  My oncologist suggested I go through th E.R. for fastest service.  Well, after an over 2 hour drive just to get there, then 2 3/4 hours later finding that there is no clot that they can find on ultrasound (but doesn’t mean that there isn’t one, as the doctor said), I then drove 2 1/2 more hours to Charlottesville to pick up Curtis who has just completed his freshman year of college and bring him home for the summer

.  I let him drive the 2 hours home. I was beat!  Thankfully the rain let up.

The day we dropped Curtis off at college 10 months ago!

If the arm doesn’t stop hurting we will re-evaluate when I am there for my infusion two days from now.  Good news is that now I can take Ibuprofen for the pain.  Before, while on chemo, I wasn’t able to take it due to a low platelet count.  So we’ll see how that works.  I could opt to have the port removed and have them start a fresh IV for each infusion over the next 8 months.  I’d rather not have to do that,  so you can pray that the pain subsides!

My fingers still hurt and are numb on the tips. Here’s what they look like now- owie!  A chemo-manicure of sorts!  They feel like I smashed them in a door.  I will ask on Wednesday if I am able to have a real manicure – my friend has plans to take me next week,  before my trip to California.  I have never had one in all my 45 years so I guess it’s time to treat myself to some pampering, but my doctor may say ‘no’  so that he can monitor what it happening under the nails.   I am anxiously looking forward to some time away next week when I go to visit my family – some time away to not think about doctors and cancer, and a time to visit friends and celebrate my parent’s 50th anniversary and new niece’s 1st birthday…a much needed escape for me!

The Battle For My Mind

The fight has just begun.

During the  7 months fighting my physical fight with breast cancer, pressing forward with treatment was the foremost thing on my mind.  Getting through the next chemo cycle, healing, re-gaining strength…these were the things I HAD to deal with. Emotions of  fear, anger, sadness, loss, despair, were placed on my back burner to be dealt with later.

Well, my “later” has come.  Others are expecting me to be jumping for joy that  my chemo therapy  is over, yet I feel more down than up.  Ending chemo therapy means they are finished doing all they can do with the heaviest of drugs…and now we wait.  Wait for what?  Wait and hope that cancer doesn’t come back, basically, is what my doctor told me.  When I wake up each day, the image in the mirror reminds me what cancer has done to me, and that I am not who I use to be.  I do not like what I see.  Losing my hair has saddened me more than anyone could imagine, even myself, and I knew it would the hardest part for me.  I just didn’t know how hard and how   l-o-n-g    it would go on. The thought that in 6 months from now I might be lucky enough to have as much hair as my husband makes me want to cry. Hearing I look pretty doesn’t make it go away.  I know what I look like with no make up and no wig and I have to live with that person.

I begin my “maintenance” chemo regimen next week, both intravenously every 21 days and orally (daily) through hormone blockers for 5 years.  My doctor tells me this will induce menopause as my ovaries are shut down for the next 5 years to prevent any cancer cells from being fed.  He assures me I will notice irritability and mood swings. Great.  Just what I need on top of my already fragile emotional state. I asked for a prescription of happy pills along with that.

And of course there’s the ever present questions my mind battles “will my cancer come back?” and “how can they be sure chemo was effective?”  “Is this pain on my side cancer in my liver?”  I am told every cancer patient becomes a hypochondriac, worried about every ache and pain, bruise, headache, or ailment being a form of cancer returned.  I have my first mammogram since last summer coming up on Friday next week.  I’ll never go into those again without absolute fear. That said, I have to now learn to manage my fears with a dose of acceptance and resolve that they can’t hold me back from living.

Being just 15 days away from my last chemo treatment, I still feel tired and a little weak. Every day gets better, but I suspect it will be another month before I feel 100%…yet others tell me that they’ve never returned to 100% of what they use to be, and some of their side effects are still there 2 years later.  I guess 4 months of being poisoned can do that to a person’s body. Every body is different, also. Nobody can place an expectation on themselves because there’s no predicting what your body will  do in this healing process.  Patience becomes your best friend.

Something said at my group Bible study this week spoke to me directly and that was WE DO NOT SERVE A HOPELESS GOD!  I am trying to hold onto that and remember that He is all about restoring my body and my spirit, and that He has only good things in store for my future.  Claiming that, in spite of this very dark place,  is the struggle I am in.  A struggle over my thoughts….a battle for my mind.

I Will Walk Through The Fire If You Want Me To -Ginny Owens scroll down for video

The pathway is broken
And The signs are unclear
And I don’t know the reason why You brought me here
But just because You love me the way that You do
I’m gonna walk through the valley
If You want me to

Chorus:
Cause I’m not who I was
When I took my first step
And I’m clinging to the promise You’re not through with me yet
so if all of these trials bring me closer to you
Then I will walk through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that’s not my home
But You never said it would be easy
You only said I’d never go alone

So when the whole world turns against me
And I’m all by myself
And I can’t hear You answer my cries for help
I’ll remember the suffering that Your love put You through
And I will walk through the darkness
If You want me to

Cuz when I cross over Jordan
Gonna sing, gonna shout,
Gonna look into Your eyes and see You never let me down
So take me on the pathway that leads me home to You
And I will walk though the valley
If You want me to

Yes, I will walk through the valley
If You want me to

Where Do I Go From Here?

With major chemo treatments finished (just targeted gene therapy still ongoing), I find myself asking what next?  LET IT GO – - SURRENDER YOUR HEART—LIBERATE YOUR DOUBTS—UNLEASH YOUR INTUITION—TAKE A RISK—DO THE THING YOU DIDNT THINK YOU COULD DO—MANIFEST COURAGE.  This is why I like this <—art here so much (at left).

This past week on chemo was rough.  The nausea lasted about 8 days, and taste was out of reach, but yesterday I began to feel well again and even enjoyed lunch out with a friend!  I still feel weak and tired, but a whole lot better, and wake up feeling ready to face the day and accomplish something.  The sun is shining and temperatures in the 80’s this weekend will make it feel like spring really has arrived. 

Today I will attend my first breast cancer support group.  My new friend is taking me, she herself an 18 month survivor.  She brought us a wonderfully delicious dinner this week (thank you Donna!) and has really shown me that one year from now I, too, can feel and be well again.  It is good to surround myself with positive people and hope.  I really look forward to meeting other survivors and hearing their stories and learning about life after breast cancer.  As I am finding, there is a whole other world of information out there about nutrition, supplements, and health that I was never interested in before.  AND I am feeling like the AFTER breast cancer is closer than being treated for breast cancer.

One of the things I have noticed in a big way is that my eye site has suffered tremendously through chemo.  These last two treatments have taken their toll.  Eye twitching has been a side effect for weeks, periodically having to hold my lids still with my fingers until they settle down, but vision has deteriorated to the point where I can’t see anything 2 feet in front of me.  I am scheduling an eye appointment as soon as I can.  I get through the day with very strong “readers”.  A nosebleed in the store yesterday reminded me that these drugs are still raging through my body and aren’t finished with their work yet.  My nails have continued to show furthered signs of bleeding underneath. I hope they can hang on until the end.  My large big toenail looks like he is ready to give up and fall off.  At least I can hide him in my shoe!

My son’s girlfriend Rachael is just $450 away from her fundraising goal and ability to walk in the Avon Walk which is in just 10 days!  Way to go Rachael!!  Thank you so much. Here is the link to her Avon Walk page: http://walk.avonfoundation.org/site/TR?px=4439340&fr_id=1760&pg=personal

Last of the Neulasta Shots!

So here is the last of the $36,000 (6 x $6,000) in shots to keep me well during chemo therapy the last 4 months.  Amazing,isn’t it?  Thank goodness for military medical insurance! This medicine allows my own white blood cells to begin to rebuild in about 5 days from now, causing some bone pain in my lower back.  I wouldn’t trade it, though, as it prevents me from the high susceptibility to infection and, even still,  I have managed to get a few of those over my treatment course.  Tim puts up with my whining as it stings going into the arm, but it is short lived and has no ill side effects.  He’s such a good nurse!

Done With Chemo! Spring (hair) has Sprung!

Here I am (gypsy-look) at the end of the last chemo drip bag,  (hey! I got a window seat this day!) looking a little worn, a little swollen from two days of steroids, but finished with the major treatments now.  Even  with all of the anti-nausea drugs they give me orally and in my IV, I still walked out of there nauseated. It subsided after dinner until around 4 A.M.  Breakfast and more drugs helped.  My day was spent chatting with the ladies in the chair next to me.  The first, a hospital administrator named Joyce, who works in hospitality at Walter Reed, she herslef now a breast cancer patient, stage 3.  She was so inspiring and so glowing and full of hope and love for God!  We exchanged information in hopes of connecting again – then DeWanda took her place and was in hematology, for severe anemia and an iron infusion.  As it turned out we live just 2 major streets over from one another! Small world!  It was nice to talk about our college kids, and about living in our suburb and other places we have traveled.  I’m glad when I find other patients to pass the time with me who like to chat.  Tim arrived mid afternoon from the metro he took from work, and stayed with me the final two or three hours.

Yesterday I notice that sprouts of hair are starting to already emerge! See?

 

There are quite a few gray sprouts in there as well, so it seems your scalp has a memory of what was there before! (If you zoom on the second photo)  It reminds me of freshly sprouted grasslings of spring! I hope in another month to have twice this much, but it will be many months before there’s enough to actually style.  You can see here that my brows have thinned but have held on enough to be pencilled in and luckily I still have lashes, though difficult sometimes to find to put mascara on.

You can see the bruising spots under my fingernails here, feel a bit tender still, the worst being on my middle finger where I wear my SURVIVOR ring and Pink Susan G. Komen ring – how appropriate!  If I can do this, I feel like I can do anything now and come out of it okay, and maybe even a better person, more filled with compassion and more aware of what life is really about.  Know what it means to fight and survive!  Today will be my “best day” this week so I have errands to run before the “crash” comes sometime tomororw, with nausea and fatigue. 

I don’t expect to post much in the next few days unless feeling up to it.  Thanks so much for meals and prayers you are sending over this way! They are so appreciated!  A sunny warm weekend is in the forecast, so hopefully I can at least get out on the porch and soak up some rays and breath in the fresh air while Tim mulches the yard!

It’s Almost Over!

Hopeful. That is what I feel today as I look forward to my LAST and final chemo therapy session tomorrow. Four months ago this date seemed so far away, but here it is.  Although I feel like I should be looking forward to it, I guess I do dread the upcoming week as I now know all too well what to expect.   But I also know that in about two weeks I will start to feel like  butterfly emerging new and full of life, and THAT I do look forward to!

So what lies ahead of me next? Some of you have asked that.  After tomorrow’s chemo, I return the following two Wednesdays for infusions of one of the drugs, Herceptin, which is designed to halt the growth gene in breast cancer.  After that, I will get Herceptin every three weeks through my IV port for another 8 months.  (This is not considered chemo therapy,  but rather a “targeted gene-therapy” and does not cause sickness type side effects or hair loss). I have been asked to  join a support group on those days for chemo therapy patients, and to act as a helper to those who are just entering their chemo therapy or those still going through chemo, as one who has been through it and lived to “tell”.  Our summer plans are a little unknown yet as I will have surgery sometime in June to remove the tissue expander.  I just hope that it will be a quick recovery as I am anxious to start exercising and getting in shape, reclaiming my body, and moving forward with life.  We feel like we have been in a time warp for 6 months since my diagnosis.  But we are hopeful and are optimistic that this journey will be behind us and a new chapter will begin.  I look forward to what new insights I will realize having gone down this road, and  new friends I will encounter because of cancer.  I have already been so blessed to have gained those I’ve met during my treatment who have bolstered me up and gotten me through.  Thanks for being there.   And thank you for praying for me this week and weekend as I typically have had awful nausea for several days. My kids are in their school musical this weekend, and Keith is the lead character. I so desperately want to be well enough to attend and enjoy the show Friday night. SO thanks for your prayers to that end! I will update you all in a few days.

God Bless!

-Koryn

A Weepy Mess

8 days and counting down to my LAST chemo treatment!  You’d think I would be jumping for joy, but instead I am crying at the drop of a hat. Emotion is at the edge of my eyes and tears flow like April showers.  Sometimes at a simple thought, sometimes for no reason at all. Sometimes I ask myself  if I will really ever feel like cancer is “over”. Looming worry is always tip-toeing in my shadow.  8 more months of infusion treatments over the course of the next year, scans scheduled and follow ups…when can I call myself a survivor?  Some say I should claim it NOW, but I still fee like I am in the  fight.

Physically, fatigue drags me through my day.  I sleep a lot, both at night and with several naps during the day.  Simple tasks, such as walking to get the mail just a few hundred feet down the driveway, takes effort.  My fingernails now all feel like they have been hit with a hammer at the tips and are tender to the touch.  Still, I don’t have any nausea and am cooking dinners again, which I enjoy.  All those days of laying on the couch and watching Food Network after chemo have inspired me! Still, I wake up every day with no hair and that image alone brings me to tears.

Curtis was home from college this past weekend ,and as he packed up his things to travel back, he asked me to sew a hole in his pants.  I quickly did so and he packed them tightly into his duffle bag with a “thanks mom”.  There I was, crying like a baby and remembering the years and years of darning their socks or fixing a torn sleeve when they were little….thinking now of  how grown up he is and that he is leaving home again.

They tell me that chemo will induce an early menopause, and many of my chemo friends are cursing the hot flashes and night sweats in their 30’s and 40’s, which I have not experienced yet. The emotional ride is what I seem to be having right now.  Mascara running off of my three remaining eyelashes every day…I guess if I never have the ‘other’ I will be elated!!  I am w-a-y too young for that!

Spring is here and Easter is next Sunday.  Birds are chirping and flowers blooming.  Signs of new life and fresh beginnings remind me that change is coming.  Sometimes these are just happy tears that God knows my inner thoughts and desire for a brighter day.  I must believe that it is coming.

Much better day!

I’m feeling a whole lot better as of yesterday – my first day in a week without nausea!

I drove myself to treatment and here’s what I saw along the way, just a few interesting Washington D.C. sites snapped from my car:

Click (double click) for slide show

Still trying to re-gain my strength, but my doctor says to expect this low energy feeling for another several weeks.

Thanks for the flowers Kathy! They’re gorgeous!

When Our Strength in Gone

Click the arrow below or click HERE to see video

A Legacy Left Behind…

My grandma Lottie passed away this weekend.   Lottie was my last living grandparent,  at age 97.  She had such a rich and full life.  A life with no regrets.  I imagine in this photo she is walking with Jesus, finally in the presence of the One who meant most to her on this earth.  I wonder what they will talk about?  I wonder how many are in Heaven to greet her today because she pointed the way for them there?  She lived her life to please only Christ, and nobody else.  She left a shining example to me and my children that what we do in this life matters and God sees it all.  A legacy I am grateful for.

She knew in her later months that I had cancer, but she knew I would be alright.  She called me “the younger one”, as she couldn’t quite remember names.  I’m sure she remembered the times we had all spent together through the years, though.  I was with her nearly a year ago when I went to see her in California.  Her mind was fading then but her smile was ever present and her zest for living, and people never wained.

My fondest memory is of the time she came to visit me in Virginia just 6 years ago.  There was a meteor shower taking place at 3 a.m. one night.  I asked her if she had ever seen one and she said No, that nobody had ever taken her to one.  She would never have dreamed of walking out her front door to view one in the middle of the night!  (That just wouldn’t be safe!)  So she and I got up in the middle of the night and laid in sleeping bags on my driveway and watched the stars fall from the sky like rain.  It was the most amazing site!  The most amazing memory – one I will forever treasure.  Now she is with the stars and their maker forever.

I will eat Cream of Wheat in her honor today – with raisins, of course!  Just like we use to eat in her kitchen when I was a little girl. Lottie Brown Covher 1912 – 2009

Chemo #5 down!

Passing the Lincoln (on left) and Washington (sticking up behind the trees) Monuments crossing the Memorial Bridge on my way to Walter Reed.

This is the view across The Potomac river to Georgetown as I pass under The Kennedy Center For The Perofming Arts

This is the Q street bridge <—which you can read more about here, but it was finished in 1915 on Christmas Day and is adorned with the sandstone heads of 56 indians. It is my favorite site on my drive to Walter Reed.  It is almost as if they are looking down on me with their strength.

See Mr. Robn bird waiting for Spring along the Rock Creek? I almost missed him sitting there!

Entering the hospital complex. Notice that as I walk up from the parking garage there is a sign -Walter Reed Army Medical center is 100 years old this year!  It says:  “Est. 1909″

I stop every week to get my free popcorn from the soldiers who are set up in the lobby – my weekly “fix” before chemo!

My chemo friend, Ashlynn, whom I met when I first started 3 months ago.  She is finished with her treatment now (yeah!) and stopped by yesterday to say hello.

Me and my head chemo nurse, Irene, who is moving next week. Boohoo.  She always was so thorough and could make the patients laugh.  She will be missed! Boy I am lookin’ worn out in this picture!

So today is my first day after chemo cycle #5.  I woke up every two hours through the night to use the bathroom – lots of bags of fluids yesterday, plus I am pushing more and more water to see if that helps to flush the chemo drugs out of my system sooner and keep me from dehydrating, a common problem for some chemo patients.  There’s someone in there almost every week coming in JUST for re-hydration, and sometimes have to be hospitalized for it.  I am tired, but hanging in there.  Only slight nausea so far, and that is controlled.   I just started the anti-nausea steroids and Emend today so that should help also.   With just one more major cycle to go in April, I am seeing the light near the end, and that is a great feeling.  I want to say thank you to so many people for helping us through.

Kiki, for walking Colby so faithfully during the week. He loves you as much as I do!

Sara, for all the meal coordination and to those of you who have lovingly prepared our family such yummy meals!

To those who pray – I feel God’s presence when you do and I am thankful to have you in this fight!

Please keep up the prayers!

-That the nausea would go away completely and that I would regain my energy through red blood cell hemoglobin and avoid a blood transfusion.

-Pray that my liver enzymes would remain lowered as an irritated liver causes me pain in my side.

-Please also  pray against infections which  have hammered me the last two months with bladder infections and skin abscesses. Keith is home sick with the flu today so pray I would stay well.

‘Til next time

Koryn