Thursday, April 13, 2017

highly personal

One day I was out riding my bike on the trails in Washington. It was a warm summer day in August. I liked to go in the morning before the sun got too hot. The wind was blowing through my coarse head of hair affectionately referred to as "Brillo pad" by my husband. I loved the trail, & I loved the exercise. Midlife had hit, & I was trying to get in shape. Riding my bike 10 miles a day made me feel good about myself. I felt as though I was truly shaping up, & I was thankful I was doing something to help myself.

The winds of change had drifted our way, but we were clueless. We had just taken a trip on a ship, a cruise ship on which our soon-to-be son-in-law played his trumpet. We were empty nesters now, & it seemed as though we would enjoy our new stage in life. We were helping our middle daughter plan her December wedding. Our youngest was getting ready to return to College. I remember thinking about a few changes I had noticed on my left side. It happened on that cruise ship. The thing is... those changes didn't stay. I figured everything was fine. I didn't give it much thought. I did not notice the lump under my arm. I think I didn't realize that when a woman does a self exam, she needs to check her underarm area.

I was diligent about my monthly self exams (even though I didn't know to check my underarm areas). I was diligent about my mammograms even though they caused me immense anxiety, & frankly, I hated them. Just 7 months earlier, I'd had a clean mammogram. The thought never went through my mind that my life was hanging in the balance. I remember looking in the bathroom mirror & noticing a discoloration. This change stuck in my mind, but the discoloration went away just as it had done on the cruise ship. Hmmm... weird.

FAST FORWARD 1 YEAR:  I am finishing up a year's worth of treatment. My hair is just growing back in. It looks like salt & pepper. Will it be curly like it was before, or will it be straight? I have survived not having hair. I have even decided hair is highly overrated. Getting ready each morning is much simpler without hair, & hats are stylish. I don't really look like myself. I haven't ridden my bike in a year, & I no longer feel very feminine.  My life is so far from normal, I don't know if I were to run smack dab into my old self if I would recognize her.

For 365 days, I awakened each morning with a deep heaviness of heart. I would wake up, lay in my bed, & realize my heart was sad. Each morning I realized why I was sad. "Oh yeah," it would come back to me. "I have cancer." I am afraid. I think I must have PTSD. I feel as if this curse will never leave me. I am filled with turmoil, & I don't know what to do. I never miss a doctor appointment, but I dread each of them. "What strange words will be thrown at me today?" It's all so over my head, yet so many decisions must be made. My family weighed in, but ultimately, I am the patient. I have to make the decisions. How am I to know what to do? I can't even speak the doctor's language. It is foreign to me.

5 YEARS, 8 MONTHS LATER:  I am preparing for my 6th Race for The Cure as a Survivor. I am trying to reach my goal which I fear I have set too high. Too high for what? Not too high for Susan G. Komen. Because of her research, I live. I have grandchildren, none of which were even a thought when my lump was found. None of them would I know if not for Susan G. Komen.  I have made new friends that I didn't know before my biopsy, but some of them are no longer with us. I would never have known them if not for Susan G. Komen.  My faith is bigger than the day I was diagnosed. I would not have lived long enough to know this new depth of faith if not for Susan G. Komen.

TODAY: I am changed. I don't ride my bike 10 miles a day. My hair is soft & curly. My weight has been up & down like a pogo stick. I take 27 pills a day. I attend a support group. I go to counseling. I love my friends (old & new). My grandkids bring me unspeakable joy. I am stronger in some ways & weaker in others. I still have anxiety. I try to live in the moment. I try to live each day to the full. I celebrate life. I cry when I lose my Survivor friends. I am raising money for the 6th year in a row. My goal is $10,000. Currently, I am in third place. Last year, Team Sweet Potatas came in second. 2 years in a row before that, it came in first. The farther I get from my diagnosis, the harder it is to raise money. I don't care if my team comes in first or last, but I do care about my cause. I care about research. I care about a cure.

Monday, April 10, 2017

One hair away...

Some of you noticed my post yesterday on Facebook and contributed to my cause. Words are not enough to thank you. As I said in my post, to be brutally honest, it was a terribly sad weekend. Actually, it's been a terribly sad month for my circle of friends known as Survivors. We have a special bond. It's unexplainable but oh so strong. Some things are unsaid but understood. We share that lump in our throat feeling. That's the best way I know to describe it.

When one of us hurts, I think we all hurt. When a person is newly diagnosed, we mourn. When cancer metastasizes, we cry. We know we are all one hair away from a new diagnosis ourselves, & when one of us hears her name called, it's like serving time, taking a turn, paying dues… only it's fighting for life. None of us can predict the outcome, & with a diagnosis comes overwhelming decisions which must be made. These decisions are not about what I'd like to have for dinner or which dress I should wear to the banquet. No these decisions are, "Should I proceed with treatment? What about immunotherapy? What should I tell my children?"

These decisions are difficult. No amount of preparation in the world allows you to be ready to face such cruelty. You instantly have an electrical current running through your body. Those dreaded words which have haunted you over & over suddenly, strangely become your new reality. You've already fought it once or twice, so here's to one more fight. Here's to surgery; here's to chemo. Here's to a deep lump in your throat, & one very heavy heart. "Why me? Why not me?"

As Survivors, we do our best to encourage one another, but sometimes we don't even know what to say or do. We are helpless to help another soul. We are broken for them, but we are as clueless as the rest of the world as to how to meet their devastating needs. We can make a meal, offer words of encouragement which seem so inadequate. We can send flowers, or sit with the patient during treatment. We are limited because we can't make their world right. We know how wrong it is, but we cannot make it right. It's unfair. It's unpredictable. It's rotten.

If we have faith in God above, we pray. With or without faith, we worry. With faith, we may feel more at peace with our eternity, but still, we leave behind our loved ones. We just don't know what to do about that. It's seems so unfathomable, so cruel, yet it's not up to us. It is out of our control. Yet we feel we must take measures to ensure the future of our children. Will our husbands remarry? Many of them do. Will our children be well cared for, loved, by their new parent? Someone else will step into my place & do the things that I was supposed to do. I'm not sure how I feel about this. Oh such mixed emotions!

As the sun goes down, we quietly lay our head upon our pillow. Tears stain our cheeks, but it is dark so no one can see. We feel so alone, even if the person in our bed is snoring. We feel so alone even if we are cared for & loved beyond measure. Even if we know our spouse would not trade us for the world, we feel alone. Our survivor friends keep us in touch with reality, but they cannot ease our emotional pain or heal our sick bodies. No, they can hold our hand & pray, but they are as helpless as we, and they are one hair away.

Thursday, April 6, 2017

not a ticket to a cake walk...

Sometimes I hesitate to write a blog & even talk myself out of it. Why? Because my blogs have been known to cause my loved ones too much pain. When I speak of the atrocities of cancer, they think I am suffering. I have suffered in the past from the pangs of cancer, but now I write as a voice for future patients, newly diagnosed cancer patients, & for those with recurrence. Yes, an aggressive case of cancer sticks with you for a lifetime, the scars remain, some mental gymnastics continue to be necessary, & there are always a few scares along the way, but for the most part, I am healed in body & mind (minus my other health issues, Lol).

It has taken time, counseling, friendship, healing, & faith to get to this point, & I realize it could all be snatched out from under me in the blink of an eye, but for today, I am well (both physically & emotionally). Early on, my middle daughter wrote out the words of an old church hymn for me... "Heart of mine own heart, Whatever befall, Still be my vision, O Ruler of all." These are the last 2 lines of "Be Thou My Vision" that my young adult daughter had the wisdom to find in the heart of my crisis. I found these words online. I found them written on a plaque. I displayed them where I could always see them. I wrote them in my mind & in my heart, & I clung to them for dear life.

When a friend or loved one hurts (for whatever reason), I pray for their healing, & I also pray that they will be mindful of God's presence. People generally want a miracle. Who wouldn't? Who really wants to live with the life long fear & impact of cancer? No one. However, I maintain there are worse things that could happen in life: a child being kidnapped, being gassed to death in Syria, & atrocities such as those. Perspective matters.

I believe God's presence in my life is greater than any miracle. His presence can & will sustain me through any nightmare. I may stand in the storms of life, but with God, I will stand. That does not mean my long prayed for miracle will come. It doesn't mean I won't suffer, or even die. It just means that whatever  befalls, I will not be alone. It means that if I am taken from this earth, I will be where I am meant to be at long last in Heaven.

God's presence isn't a ticket to a cake walk or an escape from the "things" in life that cause sheer anguish. No, His presence is His grace along with His Holy Spirit (Comforter, Counselor, etc). It means I am not alone whatever befalls, & it keeps my eyes open to more than myself. It keeps God as my Vision, & I believe it reminds me that others are suffering too. Even as I suffer, I need to pray for them & be of comfort. This world is not about lil ol' me. I couldn't be more thankful!