Today I had my first oncology appointment with this 12 year old oncologist who looks like Doogie Howser’s little sister. They have the rest of my path report back. My hormone receptors were negative.That means I can’t take tomoxofin. I can’t do the hormone therapy in conjunction with the radiation. What that means is, my ass is going to be bald…okay, maybe not my ass, but possibly my head! I’m going to have to have chemo! That little tiny, less than 1cm tumor was an aggressive little bastard with high proliferation margins and no hormone receptors, so if I want to decrease my chances of a relapse ten years down the road, then I’m going to have to take chemo.
July 11, 2007
I feel just fine….for now…until the damn chemo starts! Just goes to show you that health isn’t everything. You can feel like crap and be perfectly healthy OR feel great and be dying and not know it. There’s some paranoid food for thought.
July 12, 2007 Today is Thursday. The day before my second surgery and the day I realized what tomorrow is. I arrived at work just fine. Friday the 13. That’s when it hit me. I’m having a biopsy on freaking Friday the 13th!
July 13, 2007
I went to bed really late last night talking to my husband, Johnny. But I woke up this morning at 6:30 and it’s Friday the 13th and I’m in my own body. It’s in God’s hands.
Clean nodes and clean margins, God. Okay? Thanks.
July 14, 2007
Yesterday was my surgery. The nuke study was a bit embarassing. Dr. Stoll had to stick a needle in just above the aerola. He and Anthony were both in there, and I’ll see them both and have to look them in the face when I go back to work on Wednesday. So of course, I had to crack a joke. They stuck the needle in, which felt like one hell of a bee sting. As they were watching the radition uptake flow from the injection site into the nodes, watching to see where the concentration was highest, and talking as if I wasn’t there, and I said, “Gee, if I’d ever had fantasies about being with two men, this wasn’t it.”
Yep. I’m the queen of corny.
Around 3:30, they took me into OR. I was doing good until the anesthesiologist put that mask over my face. I freaked. I’m mildly claustraphobic, but it honest to God felt like she was putting a plastic bag over my head and telling me to take a deep breath. I remember crying and saying, “I can’t breath!” But the next thing I knew, I was in the recovery room and the surgeon was telling me the surgery was over and all 4 nodes had come back clear.
July 16, 2007
Is it normal to worry about being too calm? Since finding out the nodes came back negative, it’s like this peace has come over me, as if I know everything is going to be all right. I’m putting everything in my blog because I have to get these thoughts down while they’re fresh because with all the drugs that have been pumped into my system, my memory isn’t exactly reliable.
My mother reads my blog and feels it’s of best seller quality. Trust me. I have no dreams of grandeur. Though I would love to publish a romance novel one day, and I do have an agent who will be submitting two separate manuscripts in the near future. I don’t get excited over these things any more. I have a drawer filled with rejection letters.
Adriamycin and Cyclophosphamide. (Cytoxin for short)The combo is called AC. My chemo drugs.
The oncologist gave me the choice of taking a 12 week regimen every three weeks or an 8 week regimen every other week. I’m going for the gold. Beginning Tuesday July 31, I will start my first round of chemo–once a week, every other week for eight weeks.
AC blocks DNA production in cells and inhibits enzyme replication so cancer cells can’t repair themselves. Since cancer cells reproduce faster than other cells, if there are any cancer cells left in my body, the chemo drug will stop them from reproducing or repairing themselves so they will die. That’s 8 weeks of chemo. Two months. I can survive anything for two months. Soldiers put up with a hell of a lot worse for a hell of a lot longer. I can do this!!
July 20, 2007
I cut my hair short so going bald won’t be such a drastic change.
July 31, 2007
My first chemo treatment.
First, they sterilized my skin and stuck a needle directly into my port, which was weird. I felt the prick go into my skin, but not the port, which is a disc under my skin that has a catheter that goes into my subclavian vein. Then they drew my blood to make sure my blood count was good, and checked my hemoglobin. Then we waited for the lab to mix my poison. Literally.
AC chemo drugs are so caustic the lab techs have to wear rubber protective gear and mix it under a hood with an exhaust. And I had to have a full 5ml drip of saline and a slowly pushed dose of decadron (steroids) a half hour before they could even start the chemo. The purpose of the steroid is so I don’t lose my appetite during chemo. Number one myth of chemo. Most patients do NOT lose weight on chemo. They gain it.
I got home at one thirty and took two nausea pills. I don’t feel sick, just very tired. My eyes are gritty as if I haven’t slept in days, but I’m good.My last thoughts before closing my eyes last night were, “Dear God, let me get through this first day of chemo without getting sick.” And he got me through it just fine. Thank you.
Aug 1, 2007
Well, I made it to work today and even put in a bit of overtime.
I went to bed exhausted, feeling hung over and woke up with a bad case of reflux that was a bit productive. but I didn’t really throw up. After poping a couple of nausea pills and my Prilosec, I felt well enough to go to work. I’m not bald, I’m not throwing up, but if the tingling sensation in my scalp is a harbinger of things to come, I expect that after my next treatment, I will have a few less folicles. Because I haven’t been making Selsin Blue commercials.
Aug 2, 2007
Everyone warned me, but did I listen? No. I’m hardheaded. Stubborn. All those other names I’ve been called on occasion. But putting in ten and half hours my first day after chemo was a bit too much because I didn’t last four hours today. It wasn’t nausea that did me in, it was exhaustion. And diarrhea.
Everything I ate the night before made a grand exit starting at about 2:00 a.m. I was wiped out before I ever got to work and for some reason, my teeth have started aching. Especially, my molars.Am I going to have to add losing my teeth to my list of worries? Will I then be overweight, middle-aged, bald, and toothless when this is done? Hell, as long as I beat the cancer I can always get dentures. At least my teeth will be straight.
But I’d sure like to keep my teeth.
Aug 5, 2007
The beach was just what I needed. But the trip was a beast. I get carsick now. We arrived at the camper late Friday night and I felt like hurling.
We spent Saturday afternoon on the beach. Me, set up under the umbrella with a hat and book like an old woman. Johnny sat in the sun a few feet away. But when I got hot, I waded into the surf to cool down and like to wore myself out just getting back to the chair. Later in the evening, I took a shower and a nap. After the sun went down, we walked back out on the beach and sat in the sand.
I felt grounded and centered. I felt the power of God Almighty surrounding me. And so I prayed. I prayed for strength and courage and then I let go and sat there with an open heart and soul and mind and didn’t pray. I just opened up for whatever God wanted to give back to me. And I felt at peace.
Aug 6, 2007
Learned a new word today. Nadiring. Sounds like Ralph Nadar only it has nothing to do with money. Wish it did. Nadir is the chemo killing my normal blood cells, specifically, my white blood cells (WBC’s) and making me feel tired and worn out. My Red Blood Cells (RBC’s) hematocrit, hemoglobin and platelet counts were acceptable. So, that’s good. At least I’m not anemic.Nadir occurs seven to ten days after a chemo treatment. The condition ends about the time they juice me up again. Oh, joy!
Aug 13, 2007
Around four o’clock today I was washing my hands and just happened to notice a lot of hair on my scrubs. I brushed it off and looked in the mirror and noticed that my hair was looking rather flat. I ran my fingers through it and strands came out in my fingers. Lots of strands. I ran my fingers through again and pulled out handfuls. I didn’t think it would start falling out until after the second chemo treatment. But apparently, for me, it has started falling out just thirteen days after the first treatment.
So, what is it with me and the number thirteen?
Aug 14, 2007
After supper, I took a shower and washed my hair, but it all started coming out in clumps and grossing me out. There was hair everywhere. Running down my back. Pooling at my feet. Piling up on the drain. It was nasty. As soon as I got out of the shower, I asked Johnny to shave my head. He swallowed hard and grabbed the clippers. My daughter Lauren looked as if she were about to cry. I didn’t shed a tear. It felt like taking control. I decided when I was going to go bald. And I did it that night.
Aug. 15, 2007
I wore the wig to work today but the thing is hot and mashes against my ears.I pulled that blasted thing on and off, showing my co-workers my shaved head, trying to get used to it myself–and giving my itchy scalp a chance to breathe. Not a single person made me feel uncomfortable. Had I worked anywhere else, I probably could have gone bald or worn a scarf. But women getting mammograms do not want to be reminded of the reason they were there: to screen for cancer. And I was a walking example of a not-so-good outcome. At work, it wasn’t about me. It was about my patients. I kept the wig on.
Aug. 16, 2007
An old high school friend took me for my second round of chemo. Johnny would have taken me to any of my appointments but I told him not too. He needed to work, stay occupied. We needed the money.
The Cytoxan drip tickled my throat and I got a little swimmy headed. When the nurse began pushing the adriamicin in, I got a burning sensation in the back of my throat but this time, I didn’t get the pain or sudden tightness in my chest.
Aug 17, 2007
The day after my second chemo treatment, I didn’t work. It was my scheduled day off and I took it. I did go to the oncology clinic for my neulasta shot, only to learn I’d gained three pounds since yesterday. Must be the rock that’s been sitting in my stomach since last night. I don’t feel nauseated exactly, but there is this weight in the pit of my stomach and I feel bloated and just all around “blah.”
Aug 20, 2007- Monday
I know what I’m supposed to do. I’m supposed to make myself get up and move around. I’m supposed to exercise, go to work, blah, blah, blah. Whatever. I just didn’t have the energy today to put on my wig and my happy face and go to work, so for the first time since all this started, I called in sick.
Last night, I even threw up. Not chunks, mind you, just wet nasty that grossed me out.
Finished my third chemo treatment. My daughter took me. She carried her book bag filled with books, convinced she would study. She didn’t.We talked.When we got home, I had reflux and felt tired. There just isn’t a drug in the world that’s going to make me feel good after being poisoned. But I’m not going to whine.
We don’t always know God’s plan and though I refuse to believe he “gave” me breast cancer, He knew it was coming a long time ago. Therefore, other things have fallen into place the way they have for a reason.
Yep. Things don’t always work out the way we want but sometimes they work out the way we need them to.
Sept. 7, 2007
I’m still tired and bit and I think I have an electrolyte imbalance.I’m waking up during the night with killer cramps in my calf muscles. I feel queasy if I don’t eat. Heavy, bloated, and uncomfortable if I do eat. Not true nausea so my pills don’t really help. I don’t feel good.
Sept. 13, 2007
Today was my last day of chemo. Mom took me. I got a little sick while the nurse was pushing in the adriamycin. I couldn’t tell if I was queasy from the chemo or sick from hunger. I can’t ever tell any more.
Sept. 16, 2007
Things I learned from Chemo:
1-Stay hydrated. Even when I went to bed, I kept a bottle of water nearby. Chemo burns the back of the throat like acid and without warning. And if the fire isn’t put out quickly, nausea soon follows. Then lightheadedness.
2-Don’t lie flat after chemo. For five days after a chemo treatment, I slept on the reclining end of the sofa. I learned that lesson after rushing to the sink with a bad case of early morning productive reflux after my first treatment.
3-Weight gain is inevitable. They give you fluids. They give you steroids. You don’t get much exercise. Bread becomes your best friend because it is one of the few foods that do not upset your stomach.
4-You feel sick if you don’t eat and sick if you do. But feeling sick on an empty stomach feels a lot worse. Take Prilosec if your doctor allows it.
5- Tastes change. Since those first two treatments when I had to sip a diet Coke because of the burning in the back of my throat, I haven’t been able to drink a soft drink/soda since. Carbonated beverages just don’t taste right to me any more, which is sad because I really love Diet Pepsi.
6- Stay positive. Keep a sense of humor, crack jokes, and pray. God didn’t do this to you. He is not testing you to see if you pass or fail. Sometimes bad things just happen. But God is interested in how you handle things in your life. Ask for his help getting through it, but don’t wallow in misery. That probably gets on his nerves.
No one knows at what hour death will come so we have to make the best of the time God has given us. I think that is the true test of God.
Sept. 19, 2007
I’m almost a week out from my last chemo and it’s still kicking my butt. I have a bad cough, my back hurts, and I’m short of breath. The doctor ordered a chest x-ray. I don’t have pneumonia but my immune system is vulnerable. They sent me home to rest.
Sept. 20, 2007
Tried to work, but got my lab results at lunchtime. My white blood cell count is Dangerously low and I have an infection. That same day, I was scheduled for my first radiation oncology appointment at Duke.
Sept. 25, 2007
Another lingering threat. The radiation oncologist didn’t like the results of my second excision biopsy. The medical oncologist believed chemo would destroy any remaining DCIS in the breast and did not think it was a problem. Apparently, my radiation oncologist didn’t agree. In the frozen slides from the second biopsy, there was DCIS in five of eight slides less than 1 mm from the surgical margin. There was only one DCIS on one slide in the original surgery. There shouldn’t have been any DCIS in the second biopsy. The possibility existed that my breast was potentially riddled with DCIS. And doctors usually recommend a mastectomy in a case like that.
I’d already had chemo to destroy any remaining DCIS in the breast. Lots of women have DCIS and never develop breast cancer, and I didn’t want mastectomy to be a knee jerk reaction to fear. The pathology report said DCIS in five of eight specimens but the oncologist didn’t know if it was a speck or a boat load.
He scheduled a breast MRI. And I waited, but I felt as if I were juggling knives.
“Do not let your hearts be troubled. Trust in God; trust also in me.”- John 14:1
Trusting in God would help me juggle those knives.
October 8, 2007
Dodged a bullet. The MRI was negative. I didn’t need a mastectomy. The decision was mine. I chose to keep my breast and to start radiation treatments.
October 10, 2007
Had my treatment planning at Duke. First they made a mold and shaped it to my body. When it hardened, my left ear was stuck inside the mold, my head slightly turned away from my body so that when the treatments begin, my body will be in the exact same position every time.
Next, they marked off areas on my breast with strips of radiopaque markers and put me in the CT scanner. Once the oncologist and dosimetrist mapped out my treatment plan,they marked me, covered the marks with tape, and I was able to pry myself out of the mold and get dressed.
Radiation was going to be five days a week for six weeks. At least I wasn’t having a mastectomy. And I could have the actual treatment at a local hospital.
Oct. 15, 2007
I don’t expect everyone to understand why I post a blog. I don’t do it for others or to see how many people read it. I do it for me. It’s cathartic. It keeps me from getting depressed or upset or from losing my sense of humor. I’m just trying to survive breast cancer. It doesn’t just go away. I don’t think it’s going to kill me. I have to believe that. But cancer is unpredictable and I just started radiation today. It will last for 6 weeks.
Oct. 16, 2007
My second radiation treatment didn’t take very long but afterward, I met with my new radiation oncologist.
The good news is that without even trying, I have lost four pounds since getting off chemo. The bad news is my lungs still haven’t fully recovered and the radiation could possibly do more damage. But at least I’m alive.
Oct. 24, 2007
Johnny and I went to the beach this weekend. We held hands and walked on the beach. I got very emotional and had a good cry and wonderful conversation with my husband. If I didn’t love him already, I would have fallen in love with him all over again. It’s nice to have a man say he loves you. Nicer still when he tells you he’s proud of you or that he admires your strength and courage.
Then again, the feeling is so very mutual.
Oct 28, 2007
I am so tired of looking in the mirror and seeing just my face and shiny bald head.
Nov. 14, 2007
Nine treatments left to go. I have radiation burns to the chest from mid line of the sternum to the center of my right breast and from the nipple to about six inches below the clavicle (collar bone.). I am also burned to a lesser degree on the lateral side of my right breast. The burn is red like a sunburn, but the skin is raised and feels like sandpaper. It hurts. But Silvadene cream is a miracle drug!
Nov 15, 2007
Had my first booster treatment today. Concentrated, directed radiation to the tumor bed. I have eight more and I’m Done.
Maybe then, my life can get back on track and I won’t feel so tired all the time.
Nov. 22, 2007
I have a bad radiation burn under my arm. And it’s my first Thanksgiving without Jennifer–my married daughter who lives in Germany. I missed her so much today I cried. But I’m thankful I had my mammogram when I did. I’m thankful I didn’t have a mastectomy. I’m thankful I did as well as I did with chemo. I’m thankful my lymph nodes were negative. I’m thankful for my husband and how incredibly supportive he’s been. I’m thankful for the love and support of Lauren and Jennifer. I’m thankfulmy cancer has made me closer to my mother. I’m thankful my cancer is curable. I’m thankful I’m almost finished with radiation. I’m thankful for the support and encouragement of family and friends both on and off line. And I’m thankful to God for giving me the courage and strength I need to fight and win the battle against breast cancer.
Nov. 27, 2007- Tuesday
My next to the last radiation treatment. I breathed a sigh of relief. After tomorrow, I’d be done. Unless the cancer came back before five years was up. Then I’d have no choice but to have a mastectomy. Possibly bilateral, depending on how quickly it came back. But when the doctor told me I was finished with treatments, I broke down and cried. I hadn’t really let go and now that it was over, the emotions came in a flood. I’d been such a control freak about it and now that it was almost over, it hit me. I’d made it through chemo and radiation. I beat cancer.
October 14, 2011
My last treatment was anti-climatic. But my battle isn’t over. Since that day in 2007, I’ve had multiple oncology appointments with both the radiation and medical oncologist. I had mammograms every six months from June 2007 until February 2011. I’ve had two more MRI’s and a brief scare with the left breast. But a subsequent MRI guided biopsy proved it wasn’t cancer. Still, I sometimes wonder if I made the right choice by not having a mastectomy. Sure, I can still have mammograms to check for breast cancer. But if I didn’t have breasts, I wouldn’t worry. Then again, without breasts, the cancer could come back in my chest, bones, or other organs. So, there is no right choice. There’s just the choice I could handle when I needed to make the decision.
As bad as all this was for me, I think it was worse for my husband. I knew what I was thinking and feeling. He could only guess. And he was never sure if I told him the things I did because it’s really how I felt or if I was just trying to save him from worry. To be honest, I don’t know either.
Today, I no longer see my oncologist. But I see my primary physician at least every six months. And this February will be my first screening mammogram since June 2007. My cancer was a triple negative. It could come back. But I’ve been through the fire and survived the burns. And I kept my faith.
I will be praying that your screening mammogram will be without a trace of cancer! Thanks for the information!Rebecca
Lilly Gayle said:
So will I, Becky. So will I!Thank you.
Mackenzie Crowne said:
Damn, Lilly, It sounds like your cancer-scipt contained many of the same chapters as mine. My son eyed me a minute ago, when I started to laugh out loud at your comments from July 10th. I had the exact same reaction when I met the radiation doc. He practically had pimples. I also went to the beach with my husband, to await my biopsy results, and I was calm the morning of that first, really scary surgery. Of course, that changed due to the nuke study. I wanted to hunt down whoever came up with that process (probably a guy) and stick the needle somewhere REALLY sensitive, then do the same to the inventors of neulasta! But seriously, I've had a lot of people tell me I was an inspiration because of my handling of my battle, but I've never really understood. Reading of your experience, witnessing the eerily similar feelings of frustration and fear, humor and determination, spilling out in your words, I get it. You didn't let the demon cancer have its way. You kicked its ass! That's inspiration.
Lilly Gayle said:
Mac, It is so strange how similar our stories are. My entire blog was so long and rambling I did a lot of editing. I kept it up for t3 years, posting less and less. I posted way to personal things. Things best kept to myself. Someone dear to me stopped speaking to me for airing my dirty laundry on the internet. But when I put my feelings out there. I even posted about s.e.x. Some of this I don't remember. Some of it I do. Chemo and drugs make you forget a lot of things you don't think you'll ever forget. And I wanted to remember every thought. Every feeling. Because if I could keep my faith then, I can keep on keeping the faith as that five year mark ticks ever closer. As a mammographer, I've seen too many women have a re-occurrence when they're just shy of five years and to a lesser extent, ten years. Not so much after that. So, I'm living, five years at a time. And remembering how it felt to be afraid of dying.
Mackenzie Crowne said:
Like parenthood, there is no playbook, Lilly. We all just do the best we can. You, me, and your friend who couldn't handle hearing the details. The people who backed away from me during treatment were the biggest surprise, but then who was I to judge their feelings. Hopefully your friend has come back now that you're well. If not, you have to continue to take care of yourself. If keeping track of all the little details makes you feel better, good. A positive attitude is hugely important.
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You have done a great service to all women and those who love them by posting your feelings and experiences in your battle against cancer. You give knowledge to those of us who don't get the medical details and help us to understand the treatments and terminology. Most of all you give us hope and inspire us to keep our faith, sense of humor and dignity. Each time I read your blog and am so very proud of you and I cry all over again because of all you have been through and swell with pride over how well you handled it. I still say it would make a great movie.
Autumn Jordon said:
Kudos to you, Lilly, for posting your story and encouraging all women to pay attention to their bodies. You're such an inspiration.
Lilly Gayle said:
Thanks, Autumn. And I love you too, Anonymous. 😉
Cherie Marks said:
Lilly, thank you for sharing your story. I too am a breast cancer survivor, and much of what you shared, I could sooo relate to. I went through a mastectomy, chemotherapy, and radiation. My cancer was hormone receptive, so I'm on a Tamoxifin regimen for five years. I've made it to one year, and I work hard not to think about what happens if it comes back. I stay hopeful and know now that I'm a whole lot stronger than I ever imagined.Thanks again for sharing your story.
Lilly Gayle said:
I didn't know you were a survivor. Good for you! If you'd like to share your story on my blog this month, let me know.
DAVID HAAS said:
Hello,I have a question about your blog. Please email me!Thanks,David