Pink Ribbons Post - Am I Going To Die?

Pink Ribbons is a featured series of my blog about my journey with Breast Cancer.  

At the bottom of the page, you will find the links to the other posts.  

I am currently "No Evidence of Disease" (NED)

7.29.2010
 I got the results from the biopsy.  They confirmed cancer, I have it in the lymph nodes already.  The Radiologist called yesterday to tell me herself.  Hearing 'you have cancer' takes the wind out of you.  When she told me it was in the lymph system, I started to shake.   I dropped the cell phone and KJ thanked her for calling so quickly.  She told him I needed to schedule an appointment as soon as possible with a surgeon.  I remember a keening kind of cry and then I started rocking back and forth, sobbing.  Kelly wrapped his arms around me.  He took today off for this very reason.  I clung to him, while he assured me that he will be going through this right beside me.  He told me, You don't have to do this alone but you have to fight this.  To think that my mom and my dad and my lovely aunt Doris all heard those same words.

I kept thinking "I'm going to die.  People in my family don't just get cancer.  They die from cancer.

Actual post of 7/29/2010 to my WOW girls

Oh my dear friends. I know this upsets your apple carts too. Though only a few of us have met in person, we have shared so much in our lives with each other. I am fine with anyone sharing this with prayer partners or women’s groups. I think it hits close to home for everyone with breasts.


I had no idea there was any issue with the boobs. I do self-breast exams nearly every shower. The radiologist said without the mammogram I would not have felt this tumor for at least two more years. By the time I would know there was a lump...ca could have been all around the body. This mammy, allows me to get this treated before it is throughout the body. 

I'm having a pelvic ultrasound tomorrow. That one scares me. I was supposed to have gotten it done in May but the hospital says they never got the order. They called this morning and KJ told me we need to know if there are any ovarian issues before talking to the surgeon. *gulp* He's right. But IF I had breast AND ovarian ca...Just pour me into a rubber room.

Several people have texted today and offered to drive me to appointments and one friend has offered to leave us her extra vehicle for weeks, if I have clusters of appointments. 

We will be working to get the house all cleaned up this weekend. I came home from moms, it was cluttered. With days of in and out, it looks like a laundry and paper bomb went off in it. Have you ever questioned...if I died in an accident today what would people find in my house? blech not a pretty sight. I just look around when leaving sometimes and hope I get back to pull that underwear off the ceiling fan.  Not that I have underwear on the ceiling fan here...I don't have ceiling fans.  lol  

The surgeon's visit is next Monday at 10 am. This is a 'new to me' doctor. My old surgeon doesn't "do" breasts anymore but said he would do my surgery because I'm a former patient. His first appointment wasn't until the 19th of August and no way could we wait till then. KJ's mantra is…get it out, get it out! So I opted for another surgeon and just took the one available. His name is Etters. I don't know anything about him. But his nurse, Mandy called me to get some information. She was amazing and very reassuring.  She's working on scheduling all the tests now.

***

Monday, August 2, 2010 - Got a call a little while ago that Dr. Etters wouldn't be available for my 3 pm appointment today. He found out he had OR on call. So he told them to reschedule me first pick as "she is a young woman with new cancer so I know she's scared. Schedule her first over the returns." He may have just won my heart with that comment. :) You know how everyone falls for their OB? I wonder if the same thing happens with a surgeon. 

Fighting Cancer is hard when 

you’re afraid you’re going to die.

Recommended Resource - 

Navigating Breast Cancer

Lillie D. Shockney, RN, BS, MAS

Administrative Director

John Hopkins Avon Foundation Breast Center

University Distinguished Service Associate Professor of Breast Cancer

John Hopkins University School of Medicine

Department of Surgery, Gynecology & Obstetrics

Associate Professor 

John Hopkins School of Nursing

Baltimore, MD

Breast Cancer Survivor

Pink Ribbons Links:
#4  Scared
#3  This page
#2  When They Tell You Have Cancer
#1  The day They Said Cancer.

Pink Ribbons post - When They Tell You, You Have Cancer

Pink Ribbons is a featured series of my blog about my journey with Breast Cancer.  

At the bottom of the page, you will find the links to the other posts.  

I am currently "No Evidence of Disease" (NED)

 

Rosey's Story

I can't describe the buzz that begins in your head when a tech tells you to come to the ultrasound room. "There is something we want to investigate." I was here for a routine mammogram! This was not how it is supposed to go!   She was supposed to come out and tell me it was okay to go on home!

I laid on that table in total disbelief. I remember looking away, asking 

"God...really? Are you sure about this? 

Do I really have to do this?" 

And then my next thought was about my husband. He's out there waiting for me and it's already been considerably longer than expected. I asked them to go out and tell him I was having more tests. They did but it turned out they alarmed him even more, because they would not tell him what was going on. "She is having more tests" is all they would tell him.

We are a single vehicle family. I am a home maker. He has a new position at the Hospital where he works. It's a stressful position and he has new hours. 8 - 4:30 doesn't leave a lot of room for scheduling appointments. So even though this date, is our 31st wedding anniversary; I had scheduled an appointment for a routine mammogram.

Still I told myself they are just being cautious. This was not really happening.  I struggled to hold myself together. Just a few moments into the ultrasound the Radiologist came in and told me "I am certain this is cancer. It is ductal carcinoma." 

And just that quickly she changed my life. 

In that moment, something in me gave way, like the way the ocean waves dissolve the sand castle.  There was a kind of shift where denial is left behind and you face a different future with a cold sweaty, absolute horror. You are facing the Unknown. It made me shiver.

She turns to me and speaks, "I'm here now and I can do a biopsy right now and get that out of the way or you can go home and schedule a biopsy at another time." My blood went solid. I tried to speak. My throat is so dry. I cleared my throat and tried again.

"Are we talking about a needle biopsy?"

She nods and tells me "We can do this now, so you have a final answer. I am certain this is cancer, but I understand that you need the confirmation. But if you would rather, you can schedule to come back to have it done later in the week."

"NO!" my mind screams. The idea of waiting around with this THING inside me, is something that makes me shake. "Where is my husband? I want my husband." They told me that men are not permitted back out of respect for the other women. I nodded because I think that's what I'm supposed to do. But this sucks.  I am alone and trying so hard not to panic, not to come unglued.  The technician gently takes my hand and squeezes. Tears drip from my eyes, collecting in my ears.

I know what KJ's answer would be. He would tell me to get the biopsy now. So I tell them, "Go ahead." Then I ask them to please send someone to let him know that we are now doing a biopsy. They do. But when he asks, why? They won't tell him. He told me later that he knew then. I wouldn't have sent someone out to him, if it was something normal.  So unknown to me, he sent out a panicked prayer request by texting our pastor Jason and his wife Marcia. "Pray for Tina. She was having a routine mammogram today. But she's been back there over an hour and they keep coming out to tell me they are doing more. They won't tell me what is going on. So please, pray."

I turn my head away as the Radiologist takes her position. She explains that this biopsy tool looks similar to a large syringe. The needle is large, a 16 gauge needle. I cringe. I know what that means. It is a huge needle. She explains that I will feel a pinch, then a sting. She will cut a tiny incision to insert the needle. "Whew," I told her. "I wondered how you would get that garden hose through my skin" She pats my arm and knows what I know. I'm just trying to be brave. I'm willing myself not to panic. I'm trying to cope with humor. I tell myself just one breath at a time. In and out...concentrate on breathing.

"Really God?" Are you serious? 

Have I not dealt with enough in my life?"

The room is suddenly freezing. I started actively shivering. The hard surface I'm lying on isn't helping my herniated disc, but I barely acknowledge the muscle spasm. The room is silent but for the soft whir of the ultrasound machine. There's the pinch and the sting. I can't believe this is actually happening to me. Now I understand the concept of living through a nightmare.

As she takes the biopsy, the device makes a snapping sound that makes me jump. "I will take a biopsy from two positions on this tumor. It is a small tumor, Tina. You caught it early." She adjusts the instrument. Another snap and another jump. "Tina, you will need to make an appointment with a surgeon. Do you have a surgeon?" Have a surgeon? Does everyone have a surgeon in their contact list. It so happened I did. "Dr. Pitt did my lap band."

"Oh, He is an excellent doctor. You are in good hands. He's a wonderful breast surgeon." Despite my resolve to maintain some dignity, a tear rolls down my face. I have to hold things together. I want things to slow down. I can't believe I'm now talking about surgery. She is STILL talking. "If there is no involvement of the lymph nodes, you can have a lumpectomy. If there is involvement of the nodes...well he will go over your options." Silently I tell her, there will be no lumpectomy. These breasts have betrayed me.  In 2005, I had a cancer risk assessment done.  Because mom was negative for BRCA 1 & 2, I was told I was at no more risk than the general public.  Now I feel anger. I could have had mastectomies before I got cancer.  The question crowding my mind is "how much cancer do I have?"   I already know, I will choose a bilateral mastectomy.  I won't go through this again.

The Radiologist is speaking again. I strain to hear her over the machines. "Tina, there are 2 lymph nodes that are a little large. Not grossly large, they are just on the big side of normal. But since I am right here, I am going to take biopsies of them too." I nod that I understand and continue to instruct myself to breathe. Two more snaps and a jump. 

I cannot prepare myself for those snaps.

Dr. Radiologist is speaking again. I shake my head trying to shake loose the buzzing in my ears. The room has become so loud and hot. The buzzing lifts an instant and I hear her. She's been talking so I catch mid-sentence..."Steri-strips over the incisions. They will come off on their own. Take it easy tonight. I'm giving you an ice pack to use for the drive home. Let your husband drive. Take Ibuprofen for the pain. If you develop redness, swelling or fever, call this department immediately and they will page me." Again I nod that I understand while my voice hoarsely answers, "OK."

They help me sit upright on the table. Gravity hits my head, and the buzzing is back. My mind cannot focus. I am struck with irony as I pick up my bra to dress. I just bought this bra yesterday. Pink with hot pink and yellow lipstick kiss marks all around. It was a fun bra. Now I stare it blankly. 

The fun has been drained away.

My knees are weak as I headed for the door. I stagger slightly and walk out of that chamber of horror. As I walk down the hallway toward the waiting room where Kelly sits, I stiffen my spine. I fight back tears. I have to explain what happened. I have to be strong for him. I just walked the longest hallway in the hospital. I tell myself how relieved I am that we celebrated the day before, because I just ruined our 31st anniversary.

I open the door to the waiting room and I see my husband jump to his feet. Just seeing him there breaks my resolve. We are alone in the room. Tears break forth and stream down my face, despite my determination that I will not cry. I fought the urge to run to him. As I move closer to him, he is shaking his head as he says, "They found something didn't they?"   It was not a question.  I had lost my ability to speak. He swept me into his arms and buried my head into his shoulder. And I sob.  His touch had melted my resolve to hold it together. He is an anchor in the rapids swirling around me.

I honestly don't know whether he was crying too or just stunned into silence. His voice shook as he directed me to the door and out to the truck. I think we are letting go of what once was. But I know whatever happens. I won't be facing it alone.

Fighting Cancer is hard 

when you just found out you have it

This is an ongoing special feature of my journey through Breast Cancer.  I was diagnosed on 7.27.2010 and am currently NED (No Evidence of Disease).

Link to next Pink Ribbons post -

#4   Scared

#3   Am I Going to Die?

#2  This page

#1  The Day They Said Cancer 

You Will

Often you are caught unaware. It might be in the mall, it might be at church, it might be in the waiting room of a doctor’s office. You see someone and you have a sudden understanding. Your eyes meet and there is an awareness. And there you are. Confronted with someone else’s pain. And it starts all over again.

I was standing in a crowd of people, when I looked up to see a beautiful young woman standing in front of me. Tears sat not far behind her eyes and her lips trembled. Immediately I put my hand on her arm and asked "what is wrong hon?"

“Tina, I have a lump.” And in that instant, all the chatter muffled, the busyness of others faded away. In that instant, it was only she... and me.

“Will you feel my lump and tell me if it felt like yours?”

Less than two years ago I walked in to a Women’s Health clinic for a routine mammogram. On my 31st wedding anniversary of all things. I walked out with the breast cancer diagnosis.

Totally unexpected, unprepared and truthfully devastated.

I had lost my father to colon cancer. We lost my mother’s sisters to breast and ovarian cancers. My mother was dying from liver failure brought on by HER cancer treatment. In my family, people got cancer... and they died of it.

I had felt as if someone had sucked the air from my lungs and replaced it with lead. I had tried so hard to hold it together when the mammogram became an ultrasound and the ultrasound became a biopsy. The radiologist told me “I am certain this is breast cancer. It may be in your lymph system. I will call with results Thurs. before noon.” I made it out to the lobby where my anxious husband sat alone. I saw him and all my self-control vanished. I let the tears fall as he rushed to meet me in the middle. Holding me in his arms, he made the statement, no longer a question, “they found something didn't they.” I nodded into his shoulder. In those few seconds, our future was changed. It was uncertain.

I had what is called a Lobular cancer. Lobular cancer is the second most common form of breast cancers. It grows in the milk producing glands of the breast. Lobular cancer does not lump up generally. It is flat and spreads, so it is much harder to feel. All these years of self-breast exams, I was afraid each time I would find a lump. I would have the one cancer that doesn't lump.

It usually grows slowly, so by the time it shows up on mammograms its gotten quite large. I would recall that earlier in the summer I had asked my husband, “when did my right boob get bigger than the left one?” I noticed that it was fuller.  I did not know that it is a symptom of Lobular cancer. (Sudden extra weight or fullness, size, dimples or indentations can indicate Lobular breast cancer.) 

I would find out that my tumor was relatively small in size, but it had reached into three lymph nodes. “It’s good fortune that it decided to show up when you had a mammogram,” my oncologist would tell me. “It’s usually there for years before it actually shows up on film.” I trusted it wasn't good fortune, but God.

Being told you have cancer can be equated to being strapped into the bucket seat of a roller coaster.  The conductor throws the switch and there you go. You fly up and down, thrown from side to side, jerking from one pathway to another. You want to hurl. Most of all you want to just get off. But it keeps going…and going...and going. It’s not cute. It’s not pretty.

Suddenly you are facing very important decisions with very little understanding. While there is a glut of cancer teaching out there, nearly all of it is strictly clinical. You learn about types and stages. You learn about treatments and drugs. You learn about surgeries. You learn pretty quickly that so much of this roller coaster ride is beyond your control. Even what you eat will be considered carefully…will that taste good or metallic? Will it stay down or come back up? Your normal diet flies out the window as you contemplate what you have the energy to prepare, or if you have the stamina to chew. My own “whole foods” diet gave way to fast food and packaged convenience foods because that’s all I had the ability to cope with. Except bananas…Banana was the only flavor I could taste beyond the metallic taste that accompanies chemo. Friends and loved ones kept me supplied with banana pops, banana ice cream, and banana bread. You will learn to count minutes and days, dealing with the right now because tomorrow is too scary and too far away. You search for more information about what happens next and you will hit walls.

You Will…

You will lose some friends. You will gain others. You will have some friends that you really wish you COULD lose. You will be stunned by the generosity of one and grateful for the support of many. You will find support in places you least expect it. You will be delighted by the efforts to encourage you. You will confront God. Why me, why now? You will accept that crappy things happen in a fallen world and you just hit the jackpot. You will learn that God loves you just because you are, you. It was never about how good you were, about how long you prayed, how many classes you taught or how much money you gave. You accept that HE loves you just because He LOVES you. You will learn...to accept grace.

You will learn to cope with having cancer. You will cope with the way everyone else copes with your cancer. You will hold your children, your mother, your sisters, while they sob in fear of what you just told them. They will make you promise that you will fight, and you will promise to do your best. You will be brave for them, when inside you want to crumble. You will grieve the loss of your health. Three words changed everything…

You. Have. Cancer. 

You will have anger and denial, sorrow and acceptance. You will be anxious to get on with it. Let’s get the chemo started. Let’s get the wigs and the scarves. You might even celebrate your hair’s “coming out party.” You certainly celebrate the reprieve from shaving or plucking those stray chin hairs. You anticipate each step because it’s one more step toward being over. You will learn there is no wrong way "to do cancer."

You will come to love your oncologist (and if you don’t, find another oncologist). You will let doctors implant things into your body. You will let them pump chemicals into your blood and then more drugs to offset the side effects of the chemicals. You will learn to look at your bare scalp and deal with its nakedness. You will learn a naked scalp gets cold. You will quickly figure out the difference between muscle pain and bone pain. You will learn about ‘Roid ‘Rage. You will find yourself busting a gut in the middle of Kohls Department Store, because someone thought placing pink ribbon products right next to “quick hair dry towels” was a good marketing strategy. You will find humor in the most bizarre places. You will laugh.

You will.

You will agree to let the doctors mutilate your body and remove the parts that are familiar, the parts that are yours. You won’t care because they betrayed you. (Lobular cancer is notorious for reoccurring in the opposite side.) You will learn “doctor speak”, which is what they say when they really mean something else. Like “a longer period of recovery” really means “the most painful surgery of your life.” You will experience that pain, and the burn of it will permeate everything. For a while pain will change your reality. You will learn to sleep on your back and not move. All. night. long. You will juggle drains and tubes. You will figure out how to dress but move your arms as little as possible. You will swallow your humiliation and accept help from your spouse when you discover you cannot even toilet yourself properly. You will learn to look at your scars without regret. You will find (in time) that you don’t require a bra because ONE...You no longer have nipples so headlights are no longer a concern. And TWO...You don’t need the support. The new girls are high and tight. You will feel desperate to be pretty again. And you will.

Yes, you will.

I don’t blame survivors who avoid talking about their experience. It’s hard to know how much to share to someone newly diagnosed. As in all traumas, the retelling requires a reliving. You will feel the anger, the fear and uncertainty all over again. You will feel the effects of chemo again, the trauma of shedding your hair. You will remember how you felt about your bald head, and how you cried when you realized you had lost all your eyelashes. You have to remember the pain of surgery and the shock of realization that your body is no longer familiar.

I often found myself in positions to comfort or minister to other cancer warriors. But it is hard to talk about these things. It’s hard to speak them aloud. Now, nearly two years later I am at a point I am ready to start writing. I am ready to share the experience, to tell the story. But in the midst of the roller coaster ride, in the raw anguish of it; it’s hard to think about it much less write it all out.

In the midst of it, it just sucks.

The roller coaster may never come to an end. But it will slow down and even out a bit. I decided many months ago, with fierce determination I would never be content to call myself a “survivor”.

No. I. am. a. Pink. Warrior. 

I will fight for everyone who must ride this roller coaster. I am a Pink Warrior, prepared to encourage.

I am a Pink Warrior for those who are desperate for reassurance. I am a Pink Warrior for the women who have to ride alone. I am a Pink Warrior for those who need someone to speak in truth and practicality.

  I am a Pink Warrior.

I stood there in the crowded room, unaware of everyone around me. Her eyes were fastened on mine as she watched my face for any flicker or concern as I groped around this girl’s breast. She certainly had a lump and my heart sunk as I recognized its characteristics. What should I do? She will ask me.

You will get an appointment with a breast specialist asap.  You will have a mammogram. You will have it biopsied if they find it suspicious.

Her tears dripped as she looked at her toddling child and told me, “I don’t know if I can do this, Tina.” I wrapped my arms around her and assured her that she will.

She will because her friends will support her. She will because... I will... ride the roller coaster along with her.




2 Samuel 22 : 1 - 22
“The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation. He is my stronghold, my refuge and my savior— from violent people you save me.

“I called to the LORD, who is worthy of praise, and have been saved from my enemies. The waves of death swirled about me; the torrents of destruction overwhelmed me. The cords of the grave coiled around me; the snares of death confronted me. “In my distress I called to the LORD; I called out to my God.

From his temple he heard my voice; my cry came to his ears. The earth trembled and quaked, the foundations of the heavens shook; they trembled because he was angry. Smoke rose from his nostrils; consuming fire came from his mouth, burning coals blazed out of it. He parted the heavens and came down; dark clouds were under his feet. He mounted the cherubim and flew; he soared on the wings of the wind. He made darkness his canopy around him—the dark rain clouds of the sky. Out of the brightness of his presence bolts of lightning blazed forth.

The LORD thundered from heaven; the voice of the Most High resounded. He shot his arrows and scattered the enemy, with great bolts of lightning he routed them.  The valleys of the sea were exposed and the foundations of the earth laid bare at the rebuke of the LORD, at the blast of breath from his nostrils.

“He reached down from on high and took hold of me; he drew me out of deep waters. He rescued me from my powerful enemy, from my foes, who were too strong for me. They confronted me in the day of my disaster, but the LORD was my support. He brought me out into a spacious place; HE RESCUED ME BECAUSE HE DELIGHTED IN ME.

Dedicated to Becky Edwards and Amy Dent - a couple of the world's best cheerleaders
And to the women of WOW.  Your support gave me courage.