Women with Cancer: The Inequality among us

Herein lies the great divide between the haves and the have nots.

I found this blog post by cancer advocate "Jody" pretty enlightening.
Women with Cancer: Health care: IRL

Christmas Greetings

Dear Friends and Family, Hard to believe 2011 has flown by and here we are in the midst of another Christmas Season, although we’re sure by the time you get this…its more likely to be 2012. We hope that this Christmas season finds your homes filled family laughter, love, and the Spirit of Christmas! The biggest change for 2011 is that we are officially “Empty Nesters” as of August. It seems like just yesterday we had four kids under five years old and our lives were full of diapers, sippy cups and endless hours of Barney and Sesame Street. Move that forward 18 years and we find ourselves with one college graduate and three in college--now that is superb planning! Kyle has successfully made the transition from college student to independent living as a project manager for a financial services company in Charlottesville. He’s only two hours away so we do see him fairly frequently. He started dating a beautiful young lady from Cincinnati, OH , a grad student at UVA. She goes by “Lexie”. They enjoy wine tasting and music, as well as Kyle’s 18 month-old -massive 150 pound English Mastiff puppy, Porter, the "gentle giant". Curtis will graduate with a mechanical engineering degree from University of Virginia in May. He and Kyle live a couple of miles apart and are able to get together on occasion which is nice. He is in the early stages of active job hunting. He’s been fortunate to have had several solid engineering internships with the Department of Defense which he’s hoping to parlay into a job with either one of the larger defense firms or with the government. He is president of his Christian acapella group which released another CD this year. Curt and Rachael just celebrated 4 years of dating this fall. Keith is in his second year at James Madison University (JMU)—the same school Kyle attended and loves it. He also is an Engineering major and is in Air Force ROTC. Keith also is involved with college acapella, and has become the primary “Beat Boxer”, providing vocal percussion for The Madison Project. Keith had an engineering internship last summer with the Dulles Airport Authority and really enjoyed it. Keith is a Belltower Books manager on the JMU campus, and is looking into summer internships in the engineering field for summertime. He and his girlfriend, Sarah, a longtime family friend, have been dating almost 2 years. Kelli is a freshman vocal performance and music education major, also at JMU. She is adjusting well to dorm life with her high school friend roommate, and has amassed dozens of new friends within just a few short weeks. In addition to her rigorous music classes, Kelli is performing with The BluesTones acapella group and thoroughly enjoys the stage. She also helps to lead music in the college church worship team. Kelli works at Panera Bread Company on her holiday and summer breaks, and sells and buys books with Belltower Book company on her college campus during the school year. She and Keith get home every few weeks a visit here, but their absence has left our home very quiet since the start of the semester. Koryn moved out of her closet art/work area this year, and into Kyle’s old bedroom-turned-studio where she stamps out handmade creations most days. Her business, The Taffy Box, has grown exponentially this year, which I’m afraid may end up costing more in taxes as a home business than we realize! Still, the success and growth has allowed for more travel to visit out-of-state family. In 2012 she plans a trip to Hong Kong to visit her good friend who recently moved there, and Seattle where a long-time friend now resides. Owning her own business makes vacation time unlimited! Her health has remained steady with a few bumps along the way, as life after cancer treatments can take its toll, but things are A-okay for which we are blessed and grateful! Tim continues to work for the government as civilian at the Pentagon. He works on the acquisition of some of the military’s unmanned aircraft systems, many of which you hear about in the news. While Tim enjoys his “play” time, whether it be fishing, running, tennis or golf, this year has NOT been a marquee year. In May, Tim developed a very rare neuro-muscular disease called Parsonage Turner Syndrome (Neuralgic Amyotrophy) which left his left shoulder partially paralyzed and both arms and hands in various stages of profound weakness and paralysis and pain. He’s been doing physical and occupational therapy 3-4 times a week and has made some improvement. He’s a little more functional than he was during the summer. His doctors have said the progress is encouraging but to expect a 2-5 year recovery. Once he recovers, he figures it’s a good excuse to start over learning how to play golf! All in all, it’s been quite humbling, but he is grateful for progress and the prayers of friends and family. Once again, we know and feel God’s grace through tough circumstances, and we grow in our faith in a deeper way. We celebrated our 25th wedding anniversary in November and we will take a trip to Sandals St Lucia (an island in the Carribean) in March. Despite living and travelling around the world with the Air Force, we’ve never been to the Caribbean, so we are excited. Tim hopes to scuba dive again…we’ll see. In closing, we hope you have a Merry Christmas season and experience its joy through times spent with family and friends. We look forward to hearing from you or even better…a visit! We have 4 empty beds now! Tim & Koryn Kyle, Curtis, Keith and Kelli Hutchison

Happy 25th Anniversary to US!

Stronger Than Before

All Clear!

All tests are back. D & C benign...mole excision clear margin of a Melanoma in Situ, and bone scan clear. Praise God! So what does it all mean? Why the back pain? Don't know. Why the uterine problems? Could be the ovary. The plan right now is to re scan ovary in December to see if it is a simple functional cyst as shown in pet scan in June. It could actually be the cause of problems and may need to come out but I am not signing up for that just yet. And that pesky mole that grew back? Melanoma In Situ, meaning "in place", in other words, no spread and it is GONE. Well now I have a nice 1 inch incision to thank him for, but he is gone for good this time, we hope! People ask me sometimes about the pain on my right side, and yes, I still have that pain. Daily. I guess I have just gotten use to it and until the pain management clinic opens up closer to home, I am just not interested in traveling to Bethesda for regular treatment when the pain is , well, tolerable. A tolerable daily pain for 18 months can't possibly be anything serious, right? Right now we look forward to our 25th wedding anniversary next month, and a trip to Las Vegas for my nieces wedding where we will enjoy being with my parents, brother and sister and celebrating life and love!

Chasing Cancer

Two years after cancer treatment " ended" and here I sit on my forty- eighth birthday,  waiting to have a bone scan. Just when one might think that cancer had long been put behind me, it seems to peek out at me from behind the bushes, teasing me with fearful symptoms and endless testing. On one hand, doctors say there is no evidence of disease, N.E.D., yet on the other hand they say that when a new symptom presents itself (like this nagging back pain) I should bring it to the attention of my doctors and pursue diagnostics. Nothing is dismissed. The average person might be able to let symptoms go by without really giving them  a second thought. I, on the other hand, immediately fear that cancer has returned.

And apparently, my doctor has concerns too. Why else perform all these tests? I have had friends recently diagnosed with metastasis of their breast cancer. Liver and bones, lungs, ovaries...being the usual suspects.  Women who were diagnosed about the same time as I was, whose lives are forever are being lived on borrowed time.  Nobody can tell them they will survive. They thought  they HAD survived! Just like I am thinking now!  But AM I?  Nobody knows for sure.  These women went through chemo oust as I did. But invasive cancer has a way of making a reappearance just when you thought it was gone.   And so this is how I am spending my birthday. A two hour trip through rush hour morning traffic, a 3 hour wait while the nuclear radio tracer makes it's way through my bloodstream, and (hopefully )  a cancer free "benign" result next week .  Maybe this back pain will resolve itself.  Maybe I am just getting old.   Why put myself through  all of this? Maybe I am a little more cautious than your average survivor because my initial diagnosis was made too late to save my breast, and maybe I am not as trusting of the diagnostic process.  Things get missed, as I know all too well!

Lift Me Up

Survival - Learning To Cope

This month, 3 years  ago, was the beginning of my cancer journey. My October 1st diagnosis cancer anniversary is approaching this week. What should be a time of celebration and victory, surviving 3 years, is, instead, a time of high anxiety and stress, it seems. For the past month I have lived on the edge of dread since discovering a new lump in my other breast. FINALLY, this week it was revealed that it is only a simple cyst and nothing to worry about. Another bullet dodged. This time.

All the while, pink washing is happening around me, around all of us. You've seen it, undoubtedly...pink things for sale everywhere you look, from Tic Tacs to fabric scissors and in every string of television commercials. For a breast cancer survivor these things bring a mix of emotions.  A "love / hate " relationship with PINK.   For all of the fund raising and walking, and emphasis on awareness, we seem nowhere closer to a cure than we were 3 years ago. The advances being made are primarily in the clinical trials for metastatic breast cancer...stage 4...the worst kinds, the rising numbers of young women dying from the disease, having had it spread to other parts of their bodies. More women, not fewer, are being diagnosed with breast cancer every year. Where are we going wrong?

I have had 3 weeks of B-12 shots now, and will continue weekly for the next couple of weeks and then they will test my levels to see if I can go just once a month. I haven't noticed a huge change in my energies, but small gradual changes, like I crash and burn  at 4 PM instead of 11 AM. I'll take that.

I will  have a surgical biopsy of a mole on my abdomen next month (which was removed in May) and showed atypical cells in the pathology report. It grew back. "We never like to see that", my dermatologist said.  He sent me to the dermatological surgeon, who determined it needed a different type of biopsy, the type with stitches. Oh goodie! So much for my 2012 bikini debut! The surgeon is booked for the next 4 weeks.Wait and anxiety - they go hand in hand.

That same week in October (17th) I will also have a uterine biopsy via a D & C operative hysteroscopy under general anesthesia. This is to determine the cause of what has been a year long battle of female problems, and discoveries on my pelvic MRI and Ultrasounds.  Please pray the findings of that will be easy to diagnose and treat.

So you can see that October, in and of itself, is a month of anxious thoughts for me but there are a lot of additional concerns on my plate this October.

For all of the ups and downs of health related issues, my by-line of this blog remains the same...

"Surviving Breast Cancer By The Grace Of God".

The war goes on...

The battle of breast cancer continues. It's warriors, younger and younger. Let's never forget that even those who fight war of the traditional kind, also get breast cancer. Click the photo below to learn about Keri, a young, courageous Airman in the Unites States Air Force, fighting this ugly disease. She has the same type of aggressive breast cancer that I had, called her2neu+. There are 4 segments in her web - blog, which is a photo journal essay of a day in the life of cancer - Keri's cancer. 

As October and Breast Cancer Awareness month approach in these next few weeks, awareness will be on every one's minds. And I will use this opportunity to highlight aspects of the disease most people don't consider, such as young single mothers, women under 40, risk factors, disparity in diagnostics and treatment, and the fact that finding the cause(s) is our only hope of finding a cure.

Guest Blogger, David Haas

I'd like to introduce you to David Haas, fellow blogger and cancer patient advocate. Today David is guest posting on my blog about fitness  following a cancer diagnosis. I hope you'll enjoy!
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Fitness to Help Combat Cancer

A cancer diagnosis, whether it is Prostate Cancer, breast cancer, skin cancer, or even a rare diagnosis such as a mesothelioma prognosis, is a stressful and challenging time for any individual. Cancer treatments are often painful and result in physical exhaustion in the body. While it might seem that adding exercise or fitness training to cancer treatments would only further exhaust the body, it actually helps increase energy levels.

Exercise is beneficial to the body. According to the National Cancer Institute, cancer patients who get moderate exercise between 3 to 5 hours a week are more likely to survive cancer than patients who lead a sedentary lifestyle.

Exercise Options For Cancer Patients:

Patients who are diagnosed with cancer such as breast cancer, lung cancer, mesothelioma, colon cancer , and especially Prostate cancer often benefit from different types of exercise programs. Numerous options are available depending on physical fitness level and personal interests.

• Yoga is one exercise option that is beneficial to cancer patients. Joining a yoga class will not only provide moderate and gentle exercise, but also helps relieve stress and anxiety associated with cancer. For some patients who experience negative side effects like nausea from the cancer treatments, yoga might help with the side effects as well.

• Anita Kellman’s Beat Cancer Boot Camp is an exercise program based on military exercises that is designed to help empower cancer patients and survivors. This program is designed specifically for cancer patients and helps improve the chances of beating cancer one pushup at a time while also encouraging camaraderie and support during tough times.

• Getting help from a personal trainer who works specifically with cancer patients is often a great way to get personalized exercise to deal with specific health needs. For example, breast cancer patients might require exercise to burn fat gained because of the cancer while a patient with gastrointestinal cancer would need to work on building lean muscle to minimize muscle wasting.

• Walking is a gentle exercise that is appropriate for most cancer patients. A twenty-minute walk each day will help improve cancer survival chances without harming the body or overtaxing the body.

Conclusion:

Exercise is beneficial in fighting cancer. While studies are still determining the exact effects exercise has on cancer, doctors have determined that moderate exercise increases the rate of surviving cancer, increases energy and improves the mood of patients who are fighting cancer. Patients should always discuss the most appropriate exercise programs and options with a doctor for their individual health needs.

By: David Haas

Family Vacation Memories

Mini golfing in Ocean City, MD.

Click HERE to view more from our summer vacation to Ocean City!

A Smoking Gun?

It's been a year since I began playing detective in my own health answers! This week brought some news that may be the smoking gun in my year long pain in my right side. When I approached my oncologist several weeks ago to explain that I was feeling unusually fatigued, he ordered up blood work. That was when my B-12 came back very low and he started me on oral Rx strength supplements.

One month later, I felt no better so he re-tested me and although the numbers were rising (which is a good sign), they still were not near where they needed to be so he ordered up another test (which I turned up positive for) of a very rare condition called Anti Periental Antibody causing Megaloblastic Anemia. This means that my stomach lining is not able to absorb B-12 and my liver could be using up the stores it has, hence the liver pain. He is referring me back to gastrenterology. As I am beginning to read more on the net about these disorders, I am learning that they can be a side effect of having received chemotherapy. He believes that it may be treatable using an antibiotic that stays in the stomach and kills off the bacteria that are destroying  my body's ability to produce mechanisms for absorbing nutrients.  He wants me to discuss this with the G.I. doc. Funny thing is that this all began when I was referred to G.I. for the esophageal strictures I had last year. The G.I. doctor never considered this condition, possibly because it is only found in 2% of the general population.  Needless to say, I think we are on to something!  Here's to keeping my fingers crossed that this might lead me to the relief I've been waiting for!

We are going to the Maryland beach this week with all 4 kids, renting a condo, and spending some much needed rest together! Tim's condition has not improved but he has faxed all of his records to a specialist at UVA Medical Center who he has been authorized to receive a 2nd opinion from.  While a high percentage exists that Parsonage Turner Syndrome is the correct diagnosis, his right hand pain and numbness, loss of dexterity and certain other signs point to a possible spinal cause. This doctor is a neuro-spine surgeon.  In either case, we pray that he can find some relief soon and even a few days laying on a beach will be a nice break from daily physical therapy and office work.

"Til next time!

Dog Tired

Maybe it's just the dog days of summer, or 100* temps in July, but my fatigue continues and causes me to feel like taking a nap every day after just being awake a few hours. This is after a full 8-9 solid hours of sleep at night. More likely, it is my B-12 deficiency, a form of anemia. It is a "tired" unlike even chasing the 4 kids under age 5 that I had under foot may years ago! I can only describe it as a close 2nd to the fatigue I had during chemo....like the blood has been drained from my body. Yeah, like that. Where's that pillow? I have closed my business for the next couple of weeks while I try catching up on outstanding orders and work on things around the house that have gotten behind.

My oncologist called last week to say that although my B-12 numbers are climbing in the right direction, they are not what they should be (at only about half the normal level) and he wants me to be re-tested in 5 weeks. I am continuing the daily Rx strength B-12 supplements. I'm hoping we can get to full levels in that time and start to feel more energetic again. August has me scheduled for a pelvic ultrasound (pain on right continues - almost a year now), a mammogram and a dermatology follow up. Are we having fun yet?

Last weekend we went up to New York City to take Keith and Kelli to  Broadway show, starring our long time family friend and 2011 Tony Award winner, Norbert Butz, in Catch Me If You Can. (Click on the photo, then the little arrows to the right and scroll through the rest of the photos.) What a thrill! We surprised the kids by arranging to meet Norb backstage after the show.  He was so gracious to take the time to talk to Kelli about her musical interests, and she was star struck, also meeting the other lead, Aaron Tviet when she asked him to take our picture (not realizing it was HIM!)

Monday morning found us back at Walter Reed meeting with the rehab doctors for Tim's condition. He continues to battle through the paralysis (left side) and numbness, nerve pain and limited mobility on right side.  He will be seeking a 2nd opinion from a renown spinal nerve doctor at University of Virginia in the coming weeks.

Fortunately we have the boys home from college for another couple of weeks to do things around the yard and house. After August 23rd we will officially be empty nesters!  We plan to try squeezing in a family beach trip in a couple of weeks and enjoy some rest on the sands in Maryland's shores. "Til then! ~ Koryn

Central Park, NYC

Blessings

It's been a long time since I have posted. Life has sort of consumed us these past few weeks. Summertime should be a time of rest and relaxing, but we have been spinning our wheels to and from the doctors, and it seems to be a trip in futility lately. "What if a thousand sleepless nights are what it takes to know You're near"...the words of this song ring very true in our house right now - for 7+ weeks Tim has suffered through what is now believed to be Parsonage Turner Syndrome, a rare disease that attacks the brachial plexus nerve bundles of the spine and shoulder, creating pain, numbness, and weakness and a now palsy in his left arm and severe, sharp pains in his right hand, making even the simplest tasks impossible.  Physical and occupational therapy appointments flood his calendar while he juggles full time work at  the Pentagon. Fortunately he has a very understanding work environment. He is seeking special equipment for keyboard and phone use to make his job easier, and there is a place within the building that will provide those. When he went to check it out the woman working there had no arms at all.  He said that was a real wake up call. We are blessed.

The neighbors and our kids are pitching in to help with the work Tim normally would be doing at home during the summer. Kayaking, golf, fishing, are all out of the question for now. The prognosis is a 2-5 year recovery with varying degrees of outcomes. That is a tough pill to swallow for someone who has always been very active, NEVER sick, never had surgery or even a sniffle.  So we go to the movies, browse Best Buy and Costco, eat out and try to stay busy with friends.

The little things found here and there on my recent MRIs and Pet Scans now pale in comparison, and while I am seeking to get to the bottom of a nearly year-long pain on my right side, it is not debilitating and I will get answers when it is time. For now, I am waiting to hear from my ob/gyn as to her thoughts on recent test results.  I leave on Wednesday with Kelli for Pittsburgh for her American Idol audition, which we are all very excited about! She leaves for college in just 6 weeks, a very exciting but sad day in our household, well, at least for me and Tim who are about to become Empty Nesters! I hope you'll enjoy the song below and remember as we are, that God's ways are not our ways, but His love is deep.We covet your prayers!
 

Now That Explains A Lot!

I paid a visit to the oncologist this week. I have been extremely fatigued and have continued having pain on my right rib cage side. The fatigue is what cancer survivors term 'chemo fatigue', which is a type of "tired" that I only ever felt while going through chemo a couple of years ago. It comes in waves, but hits hard and makes me feel like I must lay down and SLEEP right away. Just a total lack of energy by 10:30 a.m. and this after a full 9 hours of good sleep at night! The doctor ordered two tests. One, a blood test to check for anemia, and another, a PET scan to check and make sure cancer hasn't spread anywhere. The blood work came back very evident that I have a B-12 deficiency. He prescribed mega doses of B-12 and told me that if I didn't feel better in a couple of weeks we would start B-12 shots and see why my body isn't absorbing B-12 through my diet. So this explains a lot!  Now I wait for the PET scan which is scheduled for 2 weeks from now.   I had a clear one of those in November, so I am not expecting them to find anything earth shattering.  Still, it will be nice to get another all clear from cancer!

I also had a pelvic/uterine ultrasound this week and am still waiting for those results. Something lit up on my MRI in February that was non-descript. The gyn. wanted me to wait a couple menstrual cycles before looking again via U.S. When I had the exam I told the tech about it and she said, "No 'it's' still there. I see it". Of course, she can't tell me what it might be or what she thinks, so the radiologist is looking at the views and I hope to hear this week. I will admit I'm a bit curious. It is in the myometrium, the inner walls of the uterine muscle, not the lining. Any thoughts from anyone here who may have had this? I'll just say symptoms in this "female" regard are "annoying"...no pain though. (The only reason we found this was in the hunt for what may be causing the pain on my right side, of which this isn't even in the same vicinity!) UPDATE: they believe it is a blood clot in the uterus. nothing to be alarmed by. Leaving things alone for now.

This has been a very eventful week in our family. Kelli, our youngest graduated Summa Cum Laude from high school, so now we are officially "Empty Nesters" once she leaves for college in 2 months. 

Tim had 2 more MRIs of his shoulder and nerves in his neck this week. Please continue praying for him as he has lost use of the left arma nd has new symptoms ion the right arm. We are hoping to hold off surgery and that physical therapy may help. First MRI last week revealed he does have spinal stenosis so something may have to be done eventually but we are praying for pain relief and ability to regain use of the arm. It is in a palsey state. In true form, however, we spent today at a wine festival and he is at a baseball game this evening - nothing holds him down! Nothing!

Am I Atypical?

Apparently I am! That's what the dermatologist called to tell me today. The mole removed from my abdomen last week was determined to be Atypia, in other words, "pre-cancerous", but the margins were clear.  He wants me to be checked again in 4 months, 8 months, 12 months, then every year. (Thanks to my maternal grandmother and paternal grandfather, both of whom had numerous skin cancer lesions). The mole itself was only the size of a small pearl, but quite dark.  Now I am left with what is sure to be a nasty scar, about the size of a large pea, but seeing as I have no intentions of wearing a bikini anytime soon, it is well hidden! If you really must see it, click here.

I have an appointment with my oncologist next week since the pain on my right rib cage area has not improved in almost a year and I have had continued bouts of tender swelling in my groin on that side for over a year as well.  I have numerous sharp, tender "jabs" under my rib cage and towards my back each and every day. At times it is a take-your-breath-away pain, but it is brief and so I deal with it. I've almost become accustom to it, so much so that I have stopped all pain medications because they make me too loopy and I guess I would say that the jabs are tolerable (as much as one can stand being "slugged" in their side every day)! I'll wait to see what tricks Dr. G may have yet left in his bag.  I'm imagining the standard blood work, another scan, and another, "we can't find anything" result but it is what cancer survivors do. It is the drill for at least 5 years, and sometimes beyond.  As much as I would like to let it go, and decide once and for all that this is nothing to worry about, the fact is that I do worry and I feel very strongly that it is not normal. Fortunately for me, neither does my doctor, and he is on a mission to find it.

Summer is officially underway and next week at this time we will be graduating our last high schooler and attending college orientation soon. This same daughter plans on auditioning for American Idol in Pittsburgh later this summer as well. She can only take one parent with her. We'll be fighting over that assignment!

Reality Check

This week has been a reality check in my cancer world.  It was bound to happen.  You meet enough other breast cancer survivors in 2 years' time, and eventually the statistics will ring true...for some patients, breast cancer spreads.  Treatments are not always successful. Women with high risk types of breast cancer develop metastatic disease (stage 4).  There is no such thing as stage 5. Two of my breast cancer friends got this terrible news this week.  One has Triple Negative breast cancer and the other (like me), Her2neu positive breast cancer.  One to her bones then liver and the other to her liver. How can this be fair? They did everything right! They did the harsh surgeries...the harsh chemo therapies, and yet still, they are the unlucky ones. I am still in shock and disbelief. This is the news all survivors dread when they finish treatment - when will it come back. When will that scan or test reveal my worst nightmare come true?  And just about the time I begin to believe that I have passed some magical number of months or years that gets me "out of the woods", these women - who were diagnosed about the same time that I was, may not get out.

I met one of these friends last year when I attended a patient advisory board for women diagnosed with Her2neu breast cancer. She was from my home state and ironically she knew my cousin, also diagnosed with breast cancer that year. She, too, had damage to her muscles and back as I did last year, a result from the same surgeries we both had, our sons were the same age, and I followed her blog religiously. We bemoaned the hair loss from chemo together, and through it all I appreciated her humor and irreverent take on cancer, the medical profession's sometimes humorous happenings, and well, now?  I am not laughing. The game just changed. And it could be any one of us! THAT is the reality! None of us ever knows when or IF it WILL be us! It is a cruel reality, especially when you are diagnosed at a relatively young age with a high risk cancer because the myth that if you make it to 5 years, you're 'home free',  no longer stands true.

I've had some well meaning friends tell me I should stop going to the doctor for everything, every ache, every pain, and to just let go of cancer and get on with my life. That the worry and stress of recurrence will rob me of my joy and ability to move on.  But I am reminded that there is still no cure for breast cancer, and for the type that I had, the only promise the drug company makes is that the chemo therapy I received will keep me disease free for "longer".  But even with that, the statistics show that it is only effective 50% of the time. So which side of the fence will I fall on?

The closest thing to a "cure" is early detection, and that goes for initial diagnosis to detection of a metastisis.  Women like Elizabeth Edwards, originally diagnosed in 2004,  lived with metastatic disease for 3 1/2 years (2007-2010).  Some women live even longer than that with the disease, but at what cost? The physical costs of treatment can sometimes bring a woman to eventually decline further therapy, in exchange for a quality of life. How much life? Nobody knows. But then, that brings me back to another reality, none of us, disease or no disease, knows the number of our days.  Only God knows that. Still, I'd like to believe I have a good long number of them left on this Earth!

Listening to my body, taking care of it, being diligent in follow up care, and doctor recommendations, these are all I have in my cancer arsenal right now. So for now, this is what I do. I am still, and always will be, in the "fight". I was often asked during treatment, "Is the chemo working?"  That is a puzzling question. Because the only answer is, "I don't know".  One may wonder why in the world I would go through a treatment that I don't know is working or not. Especially with all of the health risks associated with it?  We all wanted a guarantee. This week's reality check is that there are no guarantees.  My friend had the same, lymph node negative, early staged diagnosis I had, same surgery, same chemo drugs,  but her2Neu doesn't play fair. 

After I returned from my vacation 2 weeks ago, I went to see my primary care doctor for a mole on my back that has been itching for several weeks now.  I can't see the mole, but I can feel if I twist myself into a pretzel! Well, she assured me it was nothing concerning, but sent me to a dermatologist anyway. The dermatologist confirmed the same, but noted a very dark mole on my abdomen that my gyn alerted me to 5 months ago, saying,"keep an eye on this one". The dermatologist wasted no time. Within 5 minutes he biopsied it and I now await those results. I am also having a uterine ultrasound next week to re-examine a non-descript finding discovered on my pelvic MRI in February. They had me wait through a couple of menstrual cycles before this test. Maybe the "finding" will be gone now. So the diligence continues.

 

Yep! I've come out of the closet! My NEW studio!

 This is my busy season for my The Taffy Box business, with Mother's Day, Father's Day, Graduations, Weddings and Babies being born, it is that crazy time of year when I get behind on orders, scramble to catch up each day, and yet still have 60+ orders waiting for me the next day. I can only physically process about 10 orders on a good day (when I have an assistant working with me), so you can see how quickly I can become overwhelmed!  Last year, May and June were my busiest months EVER (or so I thought) and now this year I have more than double the number of orders I did back then. It is now time to move my closet studio into a full sized room. Yeah! No more standing next to the noisy water heater! That's right, in 3 year's time I have moved from the dining room table, to the kitchen counter, to the basement work table, to the water heater closet and now to Kyle's old bedroom.  Fate found me some sturdy discarded large tables by the side of the road last week, and I am setting up "shop" downstairs. Luckily I have my two strapping college aged boys home this week to help me. Life is good!

Celebrate Courage

Me and my niece (3) becoming friends

I've been gone from home 4 days now. I spent the first half  of my vacation in Las Vegas with my sister and nieces and my mom, attending Women Of Faith, a Christian women's conference and inspirational "high" filled with celebrity speakers and big name recording artsists.  It was fantastic!  Flying out to Las Vegas, I sat next to a couple on the plane, and we talked for 2 hours together. Not once did I ever tell them I was a cancer survivor (I know, shocking isn't it?)  Until......the last 5 minutes of flight when the wife asked me about the ring on my finger. That was when I explained that I was a breast cancer survivor. Maybe I am moving forward? Maybe I am just seeing my life as more than just cancer.  I am so much more than cancer. It's not the first thing I would say about myself anymore.

This morning my mom and I flew to California where I will spend a few days with she and my dad, as well as with my brother and wife and their 3 year old. What a precious gem!  Somehow just a handful of days never seems to be enough to make up for the 25 years of separation I have had living away from my own family.  But I am fortunate to be able to enjoy my sister's airline flight priveledges, and to be my own boss and pack up and leave it all behind for a vacation "away". It's been good.  It's been needed.  While in Las Vegas I sat next to a woman at the conference whom I became friends with. She is my sister's co-worker.  As she told me about her life, she explained that her mother had breast cancer and just finished her treatments. I told  her I was also a survivor.  Right then, I slid my new pink rubber ring off my finger and told her to give it to her mom.  It says "Celebrate Courage" on it. Celebrating Courage - Now THAT's what it is all about!

Nycole wearing the pink ring I gave her to give to her mom.



Restless

This weekend we went down to Charlottesville to visit our sons and attend one of their concerts at UVA. On our 2nd day we went wine tasting at Barboursville Winery where the dogwood were blooming and where I took these photo shots of the ruins and beautiful countryside there (ruins are in the background). I know that the title of this post is Restless, and I don't look very restless in this photo (well, this was taken after about 2 glasses of wine!) I had my MRI Friday afternoon, and while I should be a pro at this now, I do get restless every time, waiting on results (update below). It was a good thing we went away for the weekend where I could distract myself and enjoy my family.
My doctor chose MRI  imaging for me this time since mammography is not the best choice of diagnostics in pre-menopausal women.  It also exposes me to unnecessary radiation, whereas MRI does not.  Mammography still has its place, and I will still undergo that in the fall. 
I am posting this song below,  from the concert, called Restless, where Curtis sings back up vocals. It took everything within me not to cry my eyes out as this song was sung. I knew God had that song for me...hand picked just for me - a message meant just for me.  He was reminding me that He wants to be more to me than simply my eternal salvation. He wants to be the keeper of my restless heart, my unsettled soul where fear lies and He wants to bathe my spirit in peace if only I would just let Him. I thank CHoosE (Christian HOOS exalt) for their faith, their willingness, their transparency, and their servant hearts being used by God in their college culture to shine God's love to hurting people. God Bless you!  Update:
MRI showed only a few benign cysts and recommends follow up mammogram in 4 months.Yeah!

Spring is in the air!

Thomas Jefferson Memorial across the Tidal Basin - Cherry Blossom Festival
Photo by Koryn Hutchison

 Washington D.C.'s annual cherry blossom festival is going on. We decided to take in the festivities yesterday and have a few photos to share with you of our day. Notice we are wearing coats?! It turned out to be pretty brisk and chilly after all, but now today it is 80 degrees here.  Maybe spring will really show up after all?

Another disappointment

 

Blood tests came back today. I did not test positive for the antigen necessary for me to participate in the San Antonio clinical trial breast cancer vaccine. I really had my hopes up  - why else would I have been led down this path? That remains to be seen now. If anything I guess it goes to show that as patients it is really up to us to know what is out there in the way of cutting edge research and available trials. The doctors certainly aren't focused on doing that across the board. I just really am at a very down place right now in all of this. 

I am scheduled for a breast mri next Friday and then my oncologist would like to investigate further into why I am not getting relief from the pain in my side and wants to determine what that is.  He emphasised again today that he does not want to give up on that.  Personally, I am tested OUT, and scanned to the point of "glowing". I'm not sure what more there could be but he has some ideas.  I told him I want to get past next week's mri first.

After getting today's news, I got in my car and turned on the radio and here is the song that was on. Thanks God.

Update



Survivor Sisters!



UPDATE: 3-22-11 So I spent Thursday and Friday last week in research/warrior mode, gathering all I could about this vaccine that I had not even heard of before a few days ago...and in the meantime I have gone away to a wonderful retreat with the women of my church and a dear new online friend who is also a survivor. I drove to New Jersey by myself to pick her up, then drove to Pennsylvania together and actually this was our first encounter with each other face to face...a beautiful weekend building memories together and sharing in God's blessings of friendship and bonding with other Christian women. See our photo at the end of this post.

Here's the update on the breast cancer vaccine mentioned in my previous post:

I had a blood test done this morning to screen me for an antigen I must have if I am going to be eligible to participate in one particular trial I did find that is available at Brooks Army Medical Center. Human Leukocyte Antigens have to be tested for when  patient has transplants or stem cell procedures too...it is standard, and rules out the population for whom the treatment won't work. In my case, it rules out 50% of women like me, so it's a toss up as to what the blood test results will be. My oncologist agrees that due to my intermediate to high risk of recurrence I am a good candidate for this clinical trial. The good news is that because they are in the military electronic records system they would have acccess to everything they would need to know about my diagnosis, pathology, etc. The other good news is that it doesn't matter that I am 15 months past active treatment. They have no time limit. The bad news? It is in Texas. That means 6 trips to Texas over 6 months. Texas is hot in the summer. Listen to me! That's my first concern! Ha ha! (Hey - I know - we lived there for 2 years!) Seriously, though, my best friend next door with whom I have been sharing all of this information with, dialed her friend in Texas in the same city as Brooks Army Med. Ctr. and her friend said she would help with transportaiton, accomodations, whatever I would need! How's that for fast? I don't know if I am even eligible or IF I would pursue this given the circumstances, but it sure is nice to know that there are good people in this world. Pondering and praying now...

Disappointed (and a little mad)

UPDATE  in next posting dated 3-22-11 I had my 4 month follow up with my breast surgeon's office yesterday. My original surgeon is no longer there because he was active duty military and a surgeon in training and breast surgery is not what he ultimately went in to. He is practicing Thoracic surgery now, another type of "chest". Too bad. I really liked him. So I saw another doctor and explained to her my concerns, changes, questions, and she was very quick and to the point, deferred my questions to the oncologist upstairs, and was on her way in about 2 seconds flat, she and her cohort in training, a 12 year old Doogie Howser. 

She put me in for a breast MRI for the first week of April, and as I was standing at the desk waiting to check out I noticed  brochure on their bulletin board. It said "Cancer Vaccine Trial". This interested me because I recently had a counseling call where the caller asked me if I knew anything about a new breast cancer vaccine being studied, and if it were available. I thumbed through the brochure and asked the nurse if she knew anything about it. She told me the study was going on in an office down the hall , in addition to the one in Texas, and she directed me there. Once there, I spoke with the trial director because I was beginning to read that I was a possible candidate for this vaccine and was getting really excited about the prospect! As soon as she asked me when I finished my Herceptin therapy (the 12 month biologic treatment I was getting in 2009) and I told her "15 months ago", her facial expression dropped and she told me that you are only eligible to participate if you are 1-6 months POST therapy.  I asked her how long this trial has been going on and she told me THREE YEARS! I told her I was never offered this option a year ago. Not by my oncologist, not by the breast center, who supposedly was sponsoring this, and that if they were recruiting patients a year ago when I was eligible, why wasn't I told? She didn't know.  That was when I went upstairs to speak with oncology.

I found my favorite nurse practitioner, Katy,  at her desk and asked if she had a moment. I handed her the brochure. I asked her what she knew about it.  Her response was a bit vague and I told her that I was no longer eligible because nobody in charge of my treatment presented it to me when I was eligible last year, Namely, Dr. "G", who is my doctor and the Chief of the department.  Right about then, Dr. "G" just happened to walk into her office.  She asked him if his ears were burning. His excuse for the slip was that it should have been the breast surgeon's office who referred me for the option of the vaccine, but they didn't and my doctor who I had at that time isn't here anymore for me to speak with, and he told me there was some 'falling out' between the chief of the breast center a couple of years ago and the doctor running the trial, and guess who pays the price for that little childish "tiff"? ARGH!

I was so very disappointed driving home.  Once again, a ball was dropped. I try to remind myself that this is only in phase 2 trials and that, while promising so far, there are no guarantees for women like me YET. There may still be a phase 3 later on where they will include women farther out from treatment to begin receiving this vaccine. It targets the body's T-cells in fighting off the her2neu which my cancer had.

Once home, I dove right into researcher mode. I contacted every drug company I could find who is doing new research on this type of therapy, prevention of recurrence of breast cancer in her2neu patients, and within 30 minutes I received a call from Pfizer. They did a short consult with me to see what studies I might be eligible for. It seems there are other options right now but it will take me some time to pour over some of the details and eligibility requirements she sent to me. It's a start. In the meantime I have several phone calls and e-mails in to various drug companies and trial sites across the country. There is a phase 3 trial right here in Northern Virginia which I would have qualified for just 4 months ago but now my time line is too late. So disappointing that high risk patients are not being told about this promising treatment. Maybe because it is only in trials yet, but hopefully there is an FDA approved protocol just over the horizon!

Never underestimate what  cancer survivor will do to stay in remission! Surviving means continuing to fight and fight for your life! Sometimes it might mean getting a little "mad".



The War On Terror

I've been trying to put into words where my mind is now, 2 1/2 years after a breast cancer diagnosis. You would think that by now I would have "moved on" or returned to life as it once was, "normal". So why hasn't that happened? I am often asked in my counseling work, how long it takes for life to feel normal again and I must say, I personally have not found that "place".  Sometimes you hear it referred to as "the NEW normal", but that is kind of misleading because it doesn't feel like it should feel and "normal" feels out of reach, somehow.


Last week I laid in bed, ready to fall asleep but I wasn't asleep yet. There in the dark of night,  my mind wandered. I have no idea what brought on the thought, but there I was, in the operating room the morning of my breast surgery and it felt every bit as real as it did on that day.  I had just been through a very painful, torturous node biopsy injection of dye, where I laid fully awake, with no anesthetic (that was the protocol at the time, believe it or not - not so anymore), and now here I was in the O.R. prep room having a nurse attempt for the third time to start an IV on me, yet blowing my veins out at every try.  I was shaking in pain and fear. I could not believe that within just minutes I was going to be rolled into surgery where I was forever to be maimed.  How could they not even get this simple step right? I remember the look that my husband gave them, "Enough you people. Can't you see she has been put through hell already?"  and  within seconds they gave me an injection of a sedative. 


That was when tears began rolling down my cheeks to my pillow. I knew in that moment that I am experiencing post traumatic stress. I re-live the  events of two years ago and they are clear as day in my memories.  Why can't I just say to myself that the cancer is gone and I can go back to my old life? Because no doctor will tell me that I am cancer free and no doctor will say that I have been cured.  I can only liken it to what  soldier must go through when he returns from war. His family is so happy he emerged alive and safe, but in his "world", the world of war, terror reigns and fear is a familiar voice in the back of his mind whispering "watch out - I'm gonna get you!"  It's as if I've returned from my war, the war on cancer, with the enemy in my back pocket -  just waiting for his chance to come back and attack. When you've been attacked once, you never let it go. You never forget.  Ever on guard, always the strategist,  aware on a daily basis of every possible change in your body, every ache, pain,  - it changes you.  


Survivors told me this when I was first told that I had breast cancer, but I had no idea what that meant - it will change you.  You'll hear soldiers return from the Middle East and say the same thing. It changes you. How can it not?  And those who have never been through an attack, can't seem to understand, and with that the survivor feels a distance from even those whom she loves.  No wonder military soldiers ask to be returned to their brothers in arms. Coming home is difficult.  Re-joining society after an experience like this feels empty and foreign.  Only other survivors seem to feel your pain and loss.  


When I was growing up, my father always answered our front door with his gun in his back pocket. It wasn't as if we lived in a bad neighborhood. We didn't. We were the upper middle class Americana, where kids played hide and seek until late at night in their yards, and we had annual Christmas potluck parties with all the neighbors. But our home had been broken into once by a burgler when we were away from home, and ever since that experience my dad has never let his guard down. Even now. Even forty years later he is aware that the enemy's attack is just one broken window away from becoming ... a bad reality.  


Isn't that what terror is after all? The fear of a very bad reality.

A little music to soothe the soul

This week was a whirlwind of sorts. I took Kelli to her School Of Music audition at James Madison University last weekend.  The link which says CLICK HERE below shows 7 pieces from her solo concert performed this weekend. A show that brought down the (full) house! We are so very proud of her and hope you'll take some time to enjoy listening to what we are privileged to hear every day. This house will be so quiet in a few months when she leaves for college. She will be attending JMU and hopefully their music program as well. We should be finding out that part here in a couple of weeks. All of the videos from this concert are at You Tube click here to find them:  CLICK HERE
I continue with the pain medication and am thankful for your continued prayer as I have continued pain in the right rib cage area but am into the 3rd week and a double dose now so will wait and see if any difference is found. God Bless!

A New Approach

My gastroenteroligist does not believe this pain is digestive tract related. He thinks that if it were, then there would be diarrhea or constipation or longer lasting bouts of pain, cramping...so he is trying a new approach. He is having me try a nerve targetted medication for 4 weeks that may help calm down a misfiring nerve (IF that is what this is). The oncologist said to go ahead and give it a try so I am. It's only been 5 days and no effect yet but it can take a couple of weeks to work and after 2 weeks the dose gets doubled so we shall see. I'm willing to try almost anything at this point, just don't take away my caffeine!

Happy Valentines Day to everybody! You are loved!

The Price of Survivorship

My oncologist just called. MRI results are negative for any growths or masses. Yeah! They saw nothing that could be explaining this upper right quadrant pain I have had for 6 months. I asked him, do I just wait now to see if it worsens or if miraculously goes away on its own? He said, 'No, I don't want to quit. There has to be something causing this pain." He wants to talk to the G.I. doctor and ask about something to do with the valve between the small intestine and large intestine, because THAT is where the pain is when he presses on my abdomen and the pain comes in waves, which explains the way the bowels work. This also explains the 2 week long food diary OI kept and the pain that came every 2 or 4 hours AFTER eating. It never seemed to matter what I ate but WHEN I ate.

Fortunately we have ruled out anything like cancer (whew), but daily pain is no fun and is worrisome. So now, another waiting game. He said there are medications they can prescribe that would treat what could be small bowel infection or relax the small bowel if it is spasm-ing , and in which case would provide some answers if they provided relief. I'd be willing to try that if it leads to some answers and some relief! He will get back with me as soon as he consults with Gastroenterology doc. Funny how the G.I. doctor checked out everything from the throat to the stomach (found stomach erosion and strictures and resolved the strictures which in turn allowed me to keep food down), and everything from the bottom end through the colon, but nothing in between (small intestines). All of this began at the same time the upper G.I. problems started so it makes sense to follow through with digestive tract causes. Chemo therapy can damage the lining of the digestive tract so all of this may just be a result of having been "poisoned" for the better part of a year, and now my body is paying the price for survival. I am very grateful for a doctor who is not going to just throw up his hands and walk away. Now we are in need of direction of which way to go.

Round #1

Round and round I go - so this was round #1 of MRIs and nothing significant seems to be reported from the pelvic MRI. Findings included a couple of  things I'd like to ask my doctor about, none of which explain the pain on my upper right side, though.  I have the abdominal MRI next week.  The only positive outcome from the last test was that I am quite certain that my  pain is not related in any way to my ovary on the right side.  I continue to experience pain every single day, mild, spontaneous, "ouch I just got slugged in the ribs" - type of pain that goes as quick as it comes.  Nothing really new here on the home front.  The boys have gone back to college and the house is pretty quiet except for the singing of our daughter (who by the way just got into her first college choice - yeah!) and who is practicing for her audition into their school of music in 3 weeks as well as a school concert she's producing as her senior project that following week.  

It was an extremely busy holiday season for my business and just when I thought I could breathe a sigh of relief after New Years, Valentine's Day ♥ is coming in a few weeks and once again I find myself buried in work, (which I love) and even better it keeps me distracted.  Tax season promises to be very interesting for me this year and so gathering records and getting organized is taking more of my time as well.  

I'll check back in here next week as soon as I hear anything after round #2 of the MRIs. God Bless!