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?