Archive | June 2009

A New Identity

id_card 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.    livepreview.aspx

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.

This entry was posted on June 26, 2009. 2 Comments

Our Hope Endures

005 (2)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

6002257392942_1_64db7874With 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 (which express an overexpression of growth factor) , 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?

This entry was posted on June 11, 2009. 4 Comments

The Great Outdoors

LifeisgoodKAYAKING

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!  VA170Tim 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.jboom017edited

This entry was posted on June 7, 2009. 1 Comment

New Beginnings

Having cancer has taken many things from me beyond my control.  It has made me vulnerable and helpless at times.  spinning_class3Part 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…

heartplant_tcToday 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 324every 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!!