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123Donna View Drop Down
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    Posted: Apr 25 2011 at 10:07pm
I posted about this blog I read on Arianna's FB page.  When I read it the words so eloquently detailed how many of us think and feel that I wanted to share it with you.  Mary has given me permission to repost her words.  Thank you Mary.  I wish others could understand how those of us on this cancer journey feel.

They Didn't Tell Me There Was No Exit © Mary E. Carpenter (August 15, 2008)

by Mary E. Carpenter on Monday, April 18, 2011 at 1:52am

I entered the door after rushing from an interview. I knew my marriage was over and I had been focused on getting a job. It was necessary to move forward with my life and remove the negative person that once claimed he would be there for me for anything. I learned early on that those words weren't honest, but we had children and we had a life. The one we chose and accepted up until that point. For me and my children, I knew that this negative force had to go. It had been six months since mom had died of lung cancer and we had dad settled at Dee's house. His Alzheimer's was stable. I was grateful for that. He knew me and my children and the rest of the family. It seemed time to navigate into positive territory and begin creating that new life I knew waited for me.

 

There were people in chairs waiting everywhere. I realized I was in the wrong building. I had to run through that one and across a parking lot to get to the building that held the radiology department. I was running a little late for my mammogram. I had found a lump a little more than a month earlier. I wasn't panicked, but I didn't feel good about the lump. The women made faces and whispered to one another behind the counter when I checked in. Discussing how young I looked and giving me the "poor thing" look. I wasn't fazed by it at all. I was there to take care of business. I had my mammogram and stuck around for an ultrasound at the request of the radiologist. He didn't tell me anything I didn't already know. I knew I needed to see the surgeon and had already scheduled that appointment. I needed to get going. I had children to pick up from school. I had a life to live.

 

After the surgeries and the diagnosis, I was determined to get through my treatment and kick cancer's ass and get back to normal. As a matter of fact, I was determined to stay normal and do everything I had done before my diagnosis. I went to soccer games for my daughters and volunteered at the schools. I read stories to my three year old and attended Boy Scout events for my son. I even helped him complete his Eagle Project. But what was normal about it? I was swollen and plump from steroids intended to keep me alive and prevent severe side effects, my head and face bald from chemotherapy. I took a bucket to soccer games and tournaments, so I could vomit in it at stop signs and red lights or just sitting in parking lots. I told the other parents that there's always a bush somewhere and I meant it. I would throw up in the bushes near the sidelines and return to cheer on my daughter and the team. This whole breast cancer thing would not deter me from my life.

 

I felt I had accomplished something when that last chemotherapy infusion was complete. It was over. I would have radiation and that couldn't be worse than chemotherapy. They kept telling me nothing was worse than Adriamycin. And, they were right, radiation wasn't bad. It kicked my ass when it came to fatigue, though. I fell asleep while my children or their friends were talking to me. I would awake to find myself asleep on the couch or in a chair in the living room. They were all gone. After seven weeks, it was over. A month later, I saw my oncologist and she officially declared me in remission.

 

I was done and it was over and I was going to get back to normal. I went to Spain with my oldest daughter where she was invited to play soccer. Upon our return, I resumed my search for a job. The now ex still needed to go and I needed to end my marriage. I needed to have a job and be prepared financially to take care of myself and my children. I got the job and started working on improving things in our lives. I continued my follow up appointments with my regular oncologist and the radiation oncologist. The blood tests, mammograms, and the chest x-rays, too. It was just a minor annoyance. Every visit and every test was another milestone to put behind me. In between, I was just like everyone else.

 

Then it happened. I decided after more than two years to get plastic surgery on my right side to give me symmetry with the left side. I had small boobs and when they did that lumpectomy, it made a difference. It seemed silly and I almost canceled the surgery. I was healthy, so why put myself through more surgery for something so ridiculous? I did it and when the bandages were removed, I thought how cute my lifted boob looked. The left couldn't have anything done with it because of the rads, so it was still sunken in and I still thought to myself that I didn't like them anymore. I no longer wanted to do breast exams and mammograms and think what if I miss something, but that is what I had to do to make sure the beast did not return.

 

A week later, I was called to the plastic surgeon's office and told they found breast cancer in that breast. All of the blood work, chest x-rays, and even the mammogram six months prior did not detect the breast cancer in my breast. I wanted a double mastectomy just like I did when this all started. Get it out of me and let me get back to normal. I didn't need any other treatment, so it made it easier.

 

So, the breasts were taken and I was ready to move on and get back to normal, again. I was doing strength training exercises and trying to stay fit. I wanted to get back to walking my forty plus miles a week. I wanted to be me. But there were still blood tests, x-rays, and follow up appointments to schedule. They were another job in my life, added to the others of mom and writer and assistant office manager. I had to fit my other parts of my life into my job of staying alive and healthy.

 

I lost my office job and my divorce was finalized. Something in my life was finally complete, but not this cancer thing. I had several years ahead of follow up visits and tests. I had BRCA testing because of the cancer history in my family. Then I found a lump in my right armpit where the second primary had been found. The same armpit where two sentinel nodes had been taken and declared negative for disease. A PET/CT determined it was likely cancer. A surgical biopsy and then a complete ALND followed. So did more treatment. A brain MRI to rule out brain mets to the relief of my oldest daughter. She had a friend whose mom had breast cancer and she was declared cancer free and cured after five years and then a year later diagnosed with brain mets. She died within a year of that diagnosis. My daughter's friend was ten or so at the time. I had a complete CT of my body and head following the brain MRI even though it had already been determined that I had a perfectly good brain.

 

I had to make more tough decisions and get a second opinion. I wasn't excited to learn I was special because there is only a seven percent failure rate for sentinel node biopsy. This is definitely one time in my life where I did not want to be unique. I moved to a new oncologist and we developed a treatment plan. I had sixteen more chemotherapy infusions, more anti-nausea meds, more steroids, more vomiting, more fatigue, more weight gain and weight loss, more mouth sores, another bald head and face, peeling hands and feet, a rash, neuropathy, and more rads. I made jokes and friends just as I had in the past, but here I was in the same place I had been four years ago. This is when I began asking questions about the survival statistics only to learn that those statistics include all people living with disease and those that are disease free. I think most of us believe those statistics represent the finish line without disease and I learned it wasn't true.

 

My attitude didn't change about kicking cancer's ass and I finished my treatment again. I had my CT scan post treatment and all is well, but I have a port and monthly port cleanings and blood tests. I have many follow up visits ahead with the radiation oncologist, my regular oncologist, and the geneticist. I'm scheduling my surgery to remove my ovaries, fallopian tubes, and uterus because I am at high risk for ovarian cancer. Another thing to get done, so I can move on with life.

 

I have spent so much time in the last five years in hospitals and waiting rooms. Waiting rooms for doctors, for x-rays, for blood work, for port cleanings, for chemo chairs, for radiation treatments, for scans. While sitting at the doctor's office last week, I noticed the exit sign. I noticed more as I was leaving the building. There were so many exit signs above so many doors and I lingered and looked at the one above me as I went out the door to leave the cancer center.

 

I realized on my way through the parking lot to my truck that they never tell you there is no exit. They forgot to include that in my diagnosis. The doctor never came to me and said, "Mary, there isn't any exit. Sorry." But that is the truth. And, the people around me don't understand. My sister Deborah said, "I'm getting sick of this sh*t. I can't imagine how you feel. I don't know how you keep dealing with this." She said that as she waited with me last October for a chemo chair to be available. I looked at her and said, "No, you don't know how I feel. I wasn't really planning on doing this again."

 

Other people don't get it. Often, even those closest to us do not understand. They will get annoyed and act as if all of what we go through is a nuisance to their lives. They will comment that they thought we were cured or that this was all over. It seems as if they think we are not doing enough or they think we skipped a visit and that is why we are here in this place again.

 

They do not know about the hours searching for answers on the internet or perusing books at Borders. They don't know about the hours spent sitting or walking in the darkness contemplating the future for yourself or your children. They have no concept of what it is like to tell your children three times that you have breast cancer or what it is like for those children who have no father or other parental figure to turn to for support or answers. They don't know what it is like to listen in the middle of the night at the doors of the older children who will only cry when they think their mom won't hear them because they don't want her to know how scared they really are about the future. They don't know what it's like to wonder if your three year old would remember you at all if you died. They cannot understand the second guessing each time you are diagnosed again . . . wondering if you didn't do enough the last time. They do not understand scheduling surgeries in the hopes of preventing another cancer diagnosis. They can't understand that we no longer know what normal is or that we question our place in the world.

 

We live in a world with no exits. The words that treatment is complete mean nothing in this world. Although the cancer center has so many doors with exit signs, we never get to leave ourselves. We don't get to leave the body that betrayed us. We don't get to leave the mind that wonders in the darkened silence of many nights or down the road as we drive alone. We plan our lives around doctor's visits and tests. We seek the answers to the deepest questions we now have about our existence. We question every aspect of our lives. We challenge ourselves to be better sisters, moms, daughters, and friends while we seek the meaning in every relationship we have. We seek out others like us hoping they have an answer . . . that they have grasped onto that intangible something we know must be there. We search not for the exit from this place we were forced to travel, but to the entrance of a new world where we know our purpose and our place.

 

****************************************************************************

 

Dear Sweet Jolene,

 

I promised you last night I would post this essay after we had our conversation about the fact that there isn't an exit and so many people do not understand. I guess part of the road you and I travel is to help others who have not entered onto the cancer road, and, hopefully never will, to understand. I get it! I know it's important to know that.

 

Love you,

 

Mama Mary


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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outnumbered View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2011 at 7:22am
Donna,
Thanks for sharing that.  So well said!
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2011 at 10:16am
Donna,

Thanks for the "No Exit" post.  I could not have expressed it more accurately.  I was beginning to have some of these feelings as I have just completed my treatment, and with a mammo coming up in 2 days on the "good side", constant follow-ups ahead, tumor markers, etc..  Now that my breast is so shrunken from the rads, I was even wondering if I should have had a BLM, though there was no cancer noted in the right breast.  Freak out time I guess!  At least I was given the opportunity for and plan to attend the Fear of Recurrence teleconference today at noon. 

Again, thanks for all you do.  

Hugs, 
Sue 
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2011 at 2:15pm
Dear Donna,

Thanks for posting Mary's "No Exit" blog. It is sooooo true.

God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2011 at 1:14am
I agree.  I couldn't have said it better.  When I read the last few paragraphs I thought how could someone understand exactly how I feel.  It was then I realized these feelings are universal among all of us.  Even the frustration of others that just don't get it or understand what we're going through or feeling.  Without walking in our shoes, how can they understand our world of no exits?

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Momof2NJ Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2011 at 10:34am
wow...just wow.
2008 BRCA 1+ dx stg 1,gr 3 IDC triple neg. BM w/ recon. CT x 4. Prophy TAH 2007. Recurrence 9/13/10. 10/5/10 tumor excised. ACx4, Taxol x3, abraxane x 9. 38 rads. 7/11 NED!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: May 07 2011 at 7:43pm
yes, just wow
suec
 
tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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