Tuesday, May 23, 2017

Things you never knew...

The past few months have been unexpectedly beautiful. I always get a bit stressed out as the day of The Race for The Cure approaches. It took place on May 13th, so we are that much closer to next year's Race. I pressure myself to raise as much money as I can because I am passionate about research. Research, I believe is our only path to a cure for this deadly disease. I am not being overtly dramatic. This disease has taken 2 of my friends & is currently metastatic in 5 friends.

It most often seems to have no rhyme or reason. It finds a home in healthy bodies & most often in bodies that bear NO family history than do. It seems to attack the younger woman more & more, but this may just be my perspective. The younger the person, I think the more aggressive the treatment. Some forms of breast cancer are more deadly than others. Research is proving new facts every day. Susan G. Komen is connected to most of the advancements made in breast cancer  research, diagnosis, & treatment.

For the Survivor, The Race for The Cure serves as inspiration. Participating in The Race with fellow  Survivors decked out in pink tees is meaningful. The camaraderie says, "I can do this. Look at all the other Survivors who are doing this." The  support of family & friends gives the Survivor a lift which will not be felt on the medical side of this disease. When your loved one helps fund your team or shows up to walk this race with you, words cannot express how the heart is impacted.

It seems that the impact of any kindness expressed toward a Survivor is multiplied thousand fold. These kindnesses actually serve to carry the Survivor through her most vulnerable moments. I don't know quite why, but breast cancer can take a healthy person & reduce her to a raw state of vulnerability in the blink of an eye. In these most tender moments, kindness has a magical effect.

One of my magical moments came the Thursday before this year's race. A friend took his jar full of coins into Komen to support my team. For some reason, the meaning of this act of kindness put a smile on my face & across my heart that I could not hide. It made me laugh out loud because he cared this much! Even now, when I ponder this beautiful moment, I smile. Who knew?






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!


Sunday, March 19, 2017

I cry.

I am writing this blog for all the sweet friends & family I have lost to cancer, any kind of cancer. People talk about how cancer is the small "c," & Christ is the big "C." Ultimately, I believe that will always be true. The reality remains, however, that cancer is a powerful beast! It's a monster, a predator, a thief in the night that preys upon unsuspecting souls. I know I am using strong words, but frankly, I don't have strong enough words to describe cancer.

It disrupted my life unsuspectingly 6 years ago this coming summer. I think perhaps I was at one of the happiest & healthiest times of my life. I was riding my bike 10 miles a day. We had just taken a cruise to see my son in law play his trumpet on the big ship. My middle daughter was planning her wedding. Life was good.

Suddenly, one Sunday night, a lump was discovered which would alter everything about my life. Thing is, I had no idea the changes it would bring. Yes, I am still alive! Yes, I am grateful more than I have words to express. BUT, in the last (almost) six years, I have watched too many kind souls die from cancer. I have been robbed of much myself, but at the same time, I have been blessed abundantly with more than I could ever imagine. I can only thank God for that!

So... here's to my dad (tho' it's been 22 years, such a deep loss even now), my mom (had cancer among other health issues), Chauncey, Elizabeth, Brenda, Cybil Sue, Linda, & so many others. You see, the outlook of cancer is bleak. Yes, great strides are being made, but at the same time, people are still dying from cancer. If the DNA of cancer can be tracked, why are people still dying?

I do not have a medical brain.  Maybe you have the answer to my question. My only HOPE is in the big "C" (Christ) & in research. If I understand correctly, the new budget proposal cuts funding for cancer research dramatically. The National Institutes of Health budget will be reduced by $6 billion. I cry for our country & the people who stand to be hurt by this budget (not just today's cancer survivors, but future cancer survivors too).

NO ONE is IMMUNE to CANCER!  I have mentioned those who have passed, but I cannot ignore the young women who fight for their lives. Also, those who are BrCa positive & fear not only for their own lives but the lives of their precious offspring. There is my beloved & brilliant friend who just had a double mastectomy & a hysterectomy. She's only in her 30's! There's my vibrant friend whose metastatic cancer has returned with a vengeance!

Here's what goes on inside a cancer support group I attend, a group which usually has about 15 members present but the # & the faces vary from month to month: fear of lumps, fear of surgeries, marriage issues, fear of children losing their mama, children losing their mama, lack of symmetry, death, recurrence of cancer, return of metastatic cancer, lymphedema, chemo brain, loss of femininity, low self esteem, loss of hair, fear of the unknown, PET scans regularly, tears, laughter, faith, heartache, support...

It is my belief that if you find a way to support cancer, you are helping all cancers. Research is research. A breakthrough for one cancer can lead to a breakthrough for all cancers. I realize I am almost 6 years out. Yay me! Yay me for every day I have lived in the moment not being robbed of my joy! However, my odds do not improve, my life will never go back to 10 mile bike rides, & chemo has done a number on my brain & my neuromuscular disease. Please realize cancer does not define me, but it has stripped me of more than I am able to explain in this blog. Daily, I cannot escape its ruins.

So... I beg of you, please in the name of Chauncey, Elizabeth, Brenda, Cybil Sue, Linda & so many others, give to TEAM SWEET POTATAS! In the name of those who suffer now (Shelly, Jaq, young women having prophylactic surgeries, Diane, Bilinda, Ann & many more.) In the name of those who will be diagnosed tomorrow; they just don't know it. In the name of the budget proposal, please give & give generously. TEAM SWEET POTATAS needs your help but more importantly, people with names & lives need your help!


Thursday, March 16, 2017

IMPOSTERS

When I decided a few weeks ago to pick up this blog, & give it a go, I didn't waste much time thinking about it. I love writing, but lately, I just haven't had the words. I was thinking about my team, Team Sweet Potatas, & trying to figure out how in the world I will reach my goal of $10,000. The only thing I can think to do is write about the the Breast Cancer Survivor. You see, I know her. You may know me, but I don't know if you know the fabric of which I am made.

My fabric no longer has the beauty of youth, & it wouldn't even if I never had cancer. I am one of the lucky ones. (If you believe in luck. I don't). But, for the most part, my scars are hidden. Yes, they are real but few people ever see them.  My clothes cover them, & so people who don't know me probably would not know I am a Survivor unless I choose to tell them.

I have 2 eye brows which are not my originals. They look nothing like my originals, & I am okay with that. They are tattoos. I have implants, & they are what I call imposters. They are pretenders, not my originals. As the tee shirt says, "My real ones tried to kill me." These fakes don't feel like me either, but truth is, I am okay with that too. My worth has never come from them, & that is probably a good thing since what I have in their place is really no comparison.

I had radiation, & now my radiated skin is deteriorating. This radiated skin causes a multitude of problems, but few people understand what that means. My Radiologist explained all of this to me before radiation, but it had little meaning at the time. How do you understand something when you have no mental picture, no reference point? The information you are receiving is incomprehensible.

Well... there's a few other problems too, but I will get to them a little at a time. If this bores you, I understand  & beg you to disregard this blog. There's so much to share, but then, what is TMI? Sometimes it's hard to know, & then I must ask, will this further my cause? I hope so. Knowledge is power, right? So... I figure the more I share, the more the reader will understand the need for a cure. Hopefully, people will give generously. Feel free to give to any team. It all helps the same cause. We need a cure.

As I share with you, I am inviting you to become acquainted with the fabric that makes me. It's not the same fabric that once knit me together. It has a few patches, some rips & tears, holes, is shredded in places, & perhaps has some new pretty patterns. Sometimes I don't recognize my own fabric. It's unique, & it won't match that of any other Survivor. However, there are common threads that we all share. Some of my problems are universal Breast Cancer problems. Some of them are a bit rare, & some of them might belong only to me. Welcome to my world. Please feel free to comment, ask questions, or disregard this blog altogether. It may not be your cup of tea.


Monday, March 6, 2017

May 13th

It's that time of year where I find out who my friends really are. If you don't disown me on or before May 13 (this year's Race for The Cure), either you have a high tolerance for redundancy, or you really are my friend. I don't repeatedly share facts about Breast Cancer because it's my passion, although it is. I don't beg for money because I enjoy bugging people. I don't. I ask you to give from the heart simply to save lives. As almost everyone knows, my life changed 5 years ago. I went to bed one Sunday night knowing I had a new found lump. Two days later, I sat in the office with a doctor hearing those words I never wanted to hear.

Breast Cancer has always been one of my greatest fears. I've always had anxiety. When you take a person with anxiety & tell her that her worst fear has come true, you have a basket case. Prior to that moment, I lived my life pretending everything would be okay. When a worry came my way, I would ask my husband if he thought everything would be okay. He would humor me by saying "yes," & I would pretend he had a crystal ball. This worked well until that moment, that life changing moment.

I couldn't pretend anymore. Neither of us knew if my life would be okay, & we knew we didn't know. I was too horrified to ask my husband his thoughts. By the end of the week, I had a scary diagnosis & a treatment plan. I'm sure I had PTSD too. I couldn't sleep, but when I did, I awoke with a heavy heart. I could not escape that awful feeling of fear. I was suddenly hearing words that sounded like a foreign language. I needed an interpreter. I didn't know that my life would never be the same. I didn't know that I would live the rest of my life in a brain fog.

I had no idea that the chemo I was given would cause a neuromuscular disease I already had to progress. Losing my hair was humbling, but losing my ability to process information has been much worse. My hair grew back; my brain still has trouble thinking clearly. My memory is like "50 First Dates." If you tell me something in confidence, don't worry about me sharing it. I won't remember it. I had no idea the toll this rotten disease & its treatments would take on me & my family. They would suffer too, just in a different way.

So here I am. I have just survived another cancer scare. All is well. Some of my relationships are strained because I am changed. I wish I could understand things more easily. I feel as though my social graces are at times no longer second nature. Having memory loss is both a blessing & a curse. I forget important details. However, I don't dread things like I used to because I don't remember my upcoming events. I only tell you all of this so you will understand why I am again beginning my yearly mission.

Please donate to TEAM SWEET POTATAS.  You can search for my team on the Susan G. Komen website. Click on The Race for The Cure & then choose Peoria, IL. She (Susan G. Komen) saved my life. Please give whatever you can. Who knows who will be diagnosed next? No one is immune. Not even those with crystal balls. The farther a Survivor gets from her diagnosis, the harder it is to raise money. Please help me if you can. The sooner TEAM SWEET POTATAS reaches her goal of $10,000, the sooner I'll stop begging.

Tuesday, January 3, 2017

THIEF

As I sit down to write this blog, I don't know if I am writing it for me or for you, maybe for the both of us. It is not going to necessarily be a "feel good" read. That's my disclaimer, so if you don't want to read my introspective thoughts, feel free to X out right now. If you are still with me, please do not be concerned for me that I am in a bad or sad place. I think I am in a good place, just lots of deep thoughts (some of which are sad), but I find myself in a place of reality. I believe in living in reality. I am not a glass half empty person by any means. I am also not an "I am blessed" person. Yes, I am richly blessed in more ways than I could ever share, but still, at times, I grieve.

I have recently seen 3 thought provoking movies which I realize are in part responsible for how I am thinking & feeling. All 3 of them have impacted me greatly. I find myself thinking about them & trying to make sense of the truths they conveyed. I am not sure trying to "make sense" of truth is even possible. So, maybe it is better just to accept the truth for what it is. One of my dear friends lives by the creed, "It is what it is." I don't find her creed particularly comforting, but it is an acceptance of the truth.

I have always believed in seeing the glass half full. However, I do not believe in minimizing the empty half of the glass. I don't know if dwelling on the empty part of the glass is productive or healthy, but I believe it is a necessary part of living in the moment. Grief comes in many forms, & I don't think we allow ourselves to grow as human beings if we are not in touch with our heartaches & at least able to admit them to ourselves.
I think being cognizant of our grief is an honesty we owe to ourselves. Stuffing "it" just doesn't work.

If our grief robs us of our joy, I believe that is okay. It's painful, but it's honest. As I have thought about the messages of these 3 movies, my own place in life at this time, & the current place of so many people I know, I realize "game changers" occur in life which do not allow our existence to return to what we once knew as "normal." I believe that is where grief takes flight.

Sometimes "game changers" catch us by surprise. Other times, we see them coming. They become a part of our lives with or without permission. They are out of our control, even if we had a part in causing them. Perhaps we made a bad decision, or the game changer came like a thief in the night, forever robbing us of the life we once knew. I believe the only control we have in these life changing experiences is HOW we are going to face them.

Here is the part of the "game changer" I am just beginning to grasp. Sometimes, because a tragedy is so great or a person is unable to heal emotionally, resolution does not occur, & living a changed life is unbearable. Relationships cannot always be mended, & people remain stuck forever in a state of grief. I believe we all have a glass which is half empty or half full (depending on how we see it). I believe we all face circumstances which if given permission will put us over our edge. Some people have more "grit" than others. Somehow, they have the capacity to heal & even find beauty in disastrous situations that would leave many of us in a dysfunctional state at best. Accepting that sometimes resolution does not occur is sometimes unacceptable to me. Seeing a person unable to heal (forever walking through this life in a state of grief) is one of the most painful things I know. It likely is understandable, but in reality, so very sad.


Note: The 3 movies which impacted this blog are,,, Collateral Beauty, Fences, & Manchester by the Bay.