Tag Archive | cancer

All In The Family

Image… Or is it? When I was diagnosed with breast cancer 3 1/2 years ago, I learned that breast cancer runs in my father’s side of the family. I had never known this, probably because people in my grandparent’s generation never discussed such private body parts, um I mean, topics. Problem is, though, my father is an only child and men do not typically get breast cancer, so knowing the degree to which I might or might not be predisposed to breast or ovarian cancer was a bit in question.
Was it a random fluke or was it an environmentally caused cancer? Was it my own body’s lack of sufficient immunity? Was it indeed a genetic mutation in my DNA?                                              I think every woman who receives a cancer diagnosis yearns for that answer. It hangs over us like a dark cloud, partly because we think, perhaps, that if we know what caused our cancer we could prevent it from happening again. Well, as it turns out that may be partly true.

Women who test positive for the breast cancer gene(s) BRCA 1 or 2 are at a ten fold risk for breast and ovarian cancer over the general population. They tend to get these cancers under the age of 50, and they have a 50/50 chance of passing the genes onto their children. In the case of ovarian cancer, because there are no screening tests for the disease, by the time it is detected it is often in latter stages. With the advancement of technology it has recently been determined that additional women, initially deemed negative for the gene mutation like myself, can potentially test positive with a new test, called BART. ( BRCA large analysis rearrangement test) 3 1/2 years ago the genetic counselors told me that in years to come more advancements in testing would come available and this is beginning to happen now.

With my recent gyn ovarian symptoms and consideration for a hysterectomy, my oncologist recommended that I be tested. Today was the appointment for that test along with a lengthy counseling session with the geneticist. It was very educational and while the likelihood of a positive result being very slim, she has seen some surprising twists in other patient outcomes. It can have huge repercussions, so having the results is important to me. Not just for me, as far as surgical decisions going forward, but for my children, their children, my siblings and their children. Gone are the days when people were denied insurability based on genetics alone. Times are changing and some circles are realizing that knowledge is power and it is actually saving lives!!

While waiting for my blood draw I ran into a survivor friend. She also originally tested negative for the genes. She also is in a high risk category. When I told her what I was doing there she was shocked to learn of this new test for the first time and wants to see if it is something she should pursue as well. The problem with a statistic (which we often hear quoted) that only 7-10% of breast cancers are genetic, is that it is only based on those who <b>get</b> tested! If more women got tested would those numbers actually be higher? We won’t know until insurance companies agree to test more women and results are made known. In the meantime, survivors need to stay on top of the leading news in research and testing and press their doctors to advocate for answers to that burning question… Is it in my DNA?

The Numbers Don’t Lie!

Sample07This week I had a MUGA scan of my heart. This is a nuclear scan of the heart. Muga stands for Multiple-Gated Acquisition, a 40 minute test where the radioactive tracer injected into my bloodstream is tracked and followed by a gamma camera as I lay on a table with electrodes stuck to me and a machine records all of the activity. I began getting muga scans before starting my chemo therapy in December.  Things looked fantastic then, as I scored a 69 and was told that 55 would be optimal. Then I had another scan in March showing slight decrease in heart function at a scoring result of 65.  In July that number had gone down to 62.  That’s when I began to worry that the remaining 5 months of therapy were going to do more damage, and I’d better to something to get my heart back into shape if I could. That’s when I joined the gym and for the last 6 weeks have been exercising rigorously 3 – 4 times a week.  Tuesday’s scan showed a slight improvement and came in at 64, the ejection fraction which is an indicator of heart function.  It is no wonder! I feel great and I feel strong and am not tired all the time like I was earlier in the summer.  I will have another scan when chemo finishes after Christmas. What will a full 3 months of spin classes and treadmill do for me!? I can’t wait to find out!

What causes breast cancer? <—

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!!

California Here I Come!

001 (3)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 Weepy Mess

il_430xn101327148 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.

Are you talking to me God?

As we were driving home from church today, we passed by this sign on the side of the road.  I remembered that our Bible study leader said a couple of weeks ago that our attitude (our “mood”, if you will) is all determined by a single thought.  From there flows the attitudes of our heart and mind.  We can choose to listen to the negative, self defeating messages barreling at us, or we can speak God’s truths to ourselves and change our whole perspective.  Things like “I am valuable”, “God cares about me”, “God wants to use me”, “”He will never leave me or forsake me”, these words are shaping my view of my current circumstances and helping me stay positive and looking UP!  Funny how God speaks to us even as we’re driving down the road.  On September 10th I had to take my dog to the vet clinic.  I had just had my first core needle biopsy two days before that and was understandably pretty nervous and anxious.  There in the parking lot as I was pulling out of my parking spot, I glanced at the bumper of the car parked next to me.  On it was a sticker that read “Do Not Fear” and  a cross next to the words.  Hmmmm…was God talking to me?  Then as I pulled out onto the main road, a big truck got in front of me.  Plastered across the back were these words – “God Will Supply Everything You Need”.  I then had no doubt that reaching down from Heaven to my little finite world was the creator of the universe speaking to my soul and comforting me and instructing me.  I hadn’t at that point gone searching the Bible for peace…I was still wandering around feeling sorry for myself and full of anxiety.  But God reached out to me and spoke to me right where I was.  Again today I was reminded that His hand in in my life and through the words of others and through His words in The Bible and elsewhere He wants to communicate His love to me. 

The Wait

Six more days until the biopsy.  This must be the worst part.  The not knowing…the worrying.  I feel  shooting sensations in my breast.  I have had them for the past several months but sort of ignored it and figured they would tell me at my annual if I needed to worry about that.  It’s a constant reminder of what’s to come, although, even that I don’t really know what to expect WILL come.  I think about all sort sof things.  I think about what I will say if they tell me its benign.  I think of what I’ll do if they tell me it’s not.  I think of what I’ll tell my children and I think of what my breast will look like if they have to operate on it in any way.  I think to myself that it is all very strange that I decided in April that I would not return to work this fall and, everyone seemed so puzzled as to why I would do that!  After all, I loved my job!  I wanted to stay home full time and build my business and clean my house, I told myself.  And really, it was the truth!  But now I wonder if God has something else in the works for me and He was opening my schedule to make room for it. I could let my mind get carried away with this thing and I am trying really hard not to.  My gynecologist called last week so I could talk to her about my test results and she seemed very guarded in her answers and said that this shouild feinately be explored.  She also said (twice) “You’ll be in my prayers”.  Why would she say that?  I found it very odd.  Did she read something ominous in the report? I wish  knew for sure.  Well on a lighter note, isn’t this butterfly pretty?  I took this photo this Labor Day weekend when my husband and I went away for the night and stopped by an orchard on our way home from Pennsylvania.  It could be published in National Geographic, don’t ya think? This is a hobby I have long wanted to explore, photography, and with the purchase of a new fancy camera I am on my way!

Until next week…

The mailman came…

Got the letter in the mail from the medical center’s radiology dept. yesterday, with the finding: “Possible malignancy – schedule biopsy through your surgeon”. Does everybody’s scare include a letter like that even if it turns out to be benign? There were about 10 choices with little boxes beside each one stating things like “Please retun for additional views as your films are not conclusive enough for a thorough reading”, or “looks like a benign nodule, call for follow up in 6 months”, etc…but mine was the very last box on the page. I felt like falling apart but I didn’t. I put the letter in my filing cabinet and shut the drawer. Don’t want my kids to see that.  I guess I already knew the news, but this was the first time I’d seen that word…malignancy.  It’s never had a good reputation.

“They’ve Found Something” – Get your mammograms Ladies!

It’s been about a month since I last posted to this blog.  I’ve been very busy this summer with two college sons home and two high schoolers needing  taxi service, and sharing a car with my husband while the kids are working.  I’ve also been growing my jewelry business now that I have decided to be a full time stay at home mom (or shall I say Work At Home Mom).  I moved my jewelry making studio into the dining room but that has begun to look cluttered and outa control, so I am moving it to the basement now in hopes of staying out of my family’s way.

Just before we left on our beach vacation I had my annual mammogram.  I’ve had a lump before, but after being told many times not to worry, that it was nothing, and after realizing it hadn’t grown from its pea size in over 4 years, I honestly started to believe it was nothing and decided to put it off.  I was now 4 months overdue for my mamogram, so off I went.  They told me in two weeks I would receive the results,  and handed me an envelope to address to myself so they could mail the results.  Two weeks never came.  Within just 3 days I had a phone call and they mailed a letter to me (neither of which I got until after  reurning from vacation a week later!) to return for a diagnostic mammogram “They’ve found something” it said. 

So this week I went for the smash- you- flatter- than- a- piece- of- paper test.  (That other one was just a smash- you- flatter- than- a- pancake test! )  When I walked into the room , the technician placed my first films up on the light box to show me.  “Here”,  she said,  “is what we are going after”,  and she pointed to a white sort of starry “thing” in the center of my breast.  “We need alternate views of this”, she said, “just to be sure it’s not just a reflection or film mistake”.  I asked her if this was the pea sized lump I’d been feeling for years on my side, and she said no, this was behind the nipple.  So I put on the gown and she took the films.  After seeing stars from the painful procedure where they stretched my nipple to Kingdom Come, the technician sat me down and told me to wait to be sure the films turned out, and then after that I could leave.  Soon she returned and told me that they needed to do an ultrasound.  So down the halls we went to the ultrasound room where a doctor/radiologist did the scan.  She took what seemed like a hundred shots and measurements of what appeared to be a gray blobby ball with folded, wrinkled edges, and when I asked her how big it was she said about an inch or the size of a quarter (except it isn’t flat).  When all was done she told me they needed to biopsy it with a tissue biopsy to determine what it is.  With a totally doctor sort of look on her face she told me they always hope that it is benign.  No personality, this woman, just a serious, blank matter of fact look.  Inside, I was feeling horror.  “They’ll call you in 3 – 5 days to schedule your  procedure.”  The next day I thought to myself, why should I have to wait for THEM!  So I called them up myself and am now scheduled 19 days from now for a tissue biopsy where they make a 1/4 inch incision and use a proble to extract  tissue.  Then, they’ll take more films (ouch!) Sounds lovely doesn’t it?  The part where she told me they’ll “Numb you deeply” is the real part that makes my skin crawl! 

So here I am waiting and wondering to myself if this is what the warm , burning sensation I’ve been feeling for months in my breast is, and kicking myself that I hadn’t gotten it checked sooner, and what are they going to tell me in 3 weeks?  I’m angry that doctors for years have told me that a family history that goes back 3 generations to two great-great-aunt’s deaths from breast cancer at 44 & 46 years of age, but skipped the last two generations, means nothing at all.  And maybe it doesn’t, but what if it DOES matter?  Angry at myself for putting things off.  Angry at that matter of fact doctor who has NO business working with women in medicine because she has no heart…I’m just angry right now.  Maybe I have no reason to be, and maybe it really is nothing at all but whatever it is, it’s going to have to come OUT!?  That can’t be fun,now, can it!? 

I shared all of this that very same day with my best friend, because after calling your mom and your sister, that is the first thing you do after getting news like that!  She told me she’d been fighting with her clinic for months (6 months) to get her diagnostic mammogram which her nurse practioner prescribed, and that everyone kept giving her the run around because it didn’t come from a “real” doctor,  and she had finally thrown up her hands and just said forget it.  I’ll wait until next year when I can request a “real” doctor.  Now, she says she’s not waiting. I hope that if you’re reading this and putting it off for yourself, that you won’t either.

It worked for me and I hope it works for you.  Check out Works For Me Wednesdays at Rocks in my dryer!

Until next time…