Writing about yourself is hard. It’s easy to talk about banal issues you are having with co-workers, or with the unfriendly cashier at the grocery store. That’s not really talking about yourself. That is talking about your day to day interactions. In an indirect way, it is talking about yourself because the reactions you have to those interactions speaks a lot to who you are as a person. It’s an indirect descriptive of yourself.
Writing directly about yourself, being introspective and delving into who you are, well, that is hard.
I reviewed all the blog posts I made here back in 2013, read through them, laughed a little, and DELETED THEM ALL. What superficial dreck. What silly, vapid thoughts. Nothing about the things I wrote ever spoke to anything sincere or meaningful, and in fact seemed to speak to a person far younger than the age I was at the time I wrote them.
A mere six years later, I looked back and I cringed at the things I wrote. Is it because I have truly gained some adult perspective since then, or is it that I was able to read my posts as more of an objective outsider since it had been 6 years since I had seen the posts and remembered none of their content? I’m not sure. I aspire to be more mature. I hope to be more introspective, but again, it’s very hard.
My circumstances in life have become far more serious, however, and my hourglass lost about 40% of it’s remaining sand in a crack in its glass we will call breast cancer. Stage 4. It has the combined effect of terror, clarity, introspection, hope, and hopelessness in varying degrees at varying times.
I wanted to make this blog something more honest while simultaneously helping others who might be going through the same things that I am. I know the isolation this disease can cause, so I wanted to make this blog a place where women who have this disease can go to read my struggles and anecdotes about this illness and know they are not alone. There are many of us out there going through the same things. I repeat: YOU ARE NOT ALONE.
I guess my backstory needs to start, so here it goes: Back in the fall of 2016, I was lying in bed preparing for sleep and watching a little late night TV with my husband. It was a common practice for me to do a breast self exam whenever the thought occurred to me, and on that night, it occurred to me. I was feeling around, and I noticed a lump that had never been there before. I looked at my husband and said, “That’s weird.” “What?” he said. “I have a lump in my left breast.” “You should get that checked.” he said. “Yeah, I will.”
I didn’t really think too much about it after that. I waited 13 months to actually go to the doctor about it. It was time for my annual at my gynecologist anyway, so I figured I would let him look at it then. I wasn’t worried at all. I was only 39 years old at the time. There was absolutely ZERO history of cancer of any kind in my family. I knew the research that most breast lumps are typically cysts or fibroadenomas, that 80 to 85 percent of breast lumps are benign, so I didn’t have a single thought in my head that this was cancer.
I went to my annual, and my doctor said that he too thought it was probably a fibroadenoma. He scheduled me for a mammogram and an ultrasound just to be sure, but he told me it was probably nothing to worry about.
I was wrong. He was wrong.
After the mammogram and the ultrasound had been reviewed by the radiology doctor, I was brought into a little room at the back of the radiology center. A very nice, mild mannered woman came in and gave me the head tilt. If you don’t know what I’m talking about, let me explain. The head tilt, in my non-scientific estimation, is the subconscious tilting of the head whenever someone is about to give you terrible news. It can also be used when asking you about news they know is terrible. Another use is to ask if you are okay when they know something terrible has happened to you or in your general vicinity. So, she gave me the head tilt, and I thought, oh crap they think it’s cancer. “So the mass in your breast is showing signs of density and it is irregularly shaped, so we will need to do a biopsy on the mass. We need to have you scheduled for this procedure as soon as possible, and the earliest we can get you in is Friday morning. Can you make it Friday morning?” It was Wednesday afternoon, so they obviously thought this was bad. I said I could make it.
Friday I went for my biopsy. My husband came for moral support. Although he couldn’t be there with me during the biopsy, just knowing he was in the building did make me feel better. I cried when they inserted the vacuum needle into my breast. It didn’t hurt, but I cried because I had this feeling in the pit of my stomach that as of this moment, my life was about to take a very scary turn, and nothing would ever be the same.
Two days after my biopsy, I received a call from my gynecologist’s office asking me to come in, that the results of my biopsy were complete. Technically the surgeon is the person who normally drops the bad news on you, but my gynecologist and I had been doctor and patient for a very long time, and he wanted to be the one to hug me and tell me what was going on with my body. It was confirmed, and I had cancer. I did get that hug. I think the gynecologist even hugged my husband, but I can’t be certain of that because I felt numb. There were bright lights in the depths of this dark pit I was falling into: they felt pretty certain there was no infiltration into my lymph nodes, but of course an MRI had to be performed to be sure.
The following Saturday I had my MRI, and I met with my surgeon for the first time the Monday after that. She confirmed that yes, I have cancer, that no, it hadn’t infiltrated into my lymph nodes, but of course they would have to do a lymph node biopsy during my surgery to be sure (didn’t they tell me the MRI would tell them for sure?). My husband and I were so relieved to hear stage 2. It was the most stress relieving words that had ever been uttered in my presence. Yes, I had cancer, but it could be treated, even cured. My surgeon was a very sweet woman who also loved to hug, and after she imparted to me that she could do a simple lumpectomy to fix this issue, and I could then move on with my life, she gave me the biggest bear hug telling me everything would be okay.
Everything would be okay.
We scheduled more tests to be done prior to surgery, such as a BRCA test, even though I insisted to them all it was a waste of time to do this. I knew I had no genetic mutations, because I knew I was the white whale of my family tree by having cancer in the first place. I’m not kidding when I say that literally no one in my family at that point had ever had breast cancer, or cancer of any kind whatsoever. After that test came back negative, we proceeded to schedule my surgery. I had my surgery on August 31, 2017. After a week of being ill and recuperating, I was back at work.
I met with my oncologist post surgery. He wanted me to do chemotherapy. I didn’t want to do chemotherapy. He wanted me to take Tamoxifen. I didn’t want Tamoxifen. I wanted to do the targeted radiation only, and I didn’t want to hear anything about other post-surgery treatments. I was a stubborn and stupid jackass. I see that now in retrospect. Why didn’t I listen? What is your life worth? Is it worth a little discomfort to do all that you can to prevent cancer from killing you swiftly? Apparently, at that time, I didn’t think so. I fought that poor oncologist at every turn.
Do you know why I fought my oncologist? Do you know why I refused to accept his expertise and do whatever treatments were necessary, even if they could possibly be unnecessary? I can say I don’t know why, but I do know why. I thought, even after getting breast cancer, that it was a fluke. It was a one-off coincidence. It wasn’t going to happen again, because it shouldn’t have happened to me in the first place. The denial my brain was spewing to my common sense was staggeringly strong. I really thought they would cut out this breast cancer, and I would never think about breast cancer again, because it would never come back again.
After my 4th visit to my oncologist, I quit making appointments. I skipped my next annual with my gynecologist. I didn’t make my 6-month appointment for my mammogram post-surgery. I didn’t do anything I should have done. I was certain I was in the clear, and nothing was going to change my mind.
Until something did.
In the beginning fall of 2018, around September 21, as my family was preparing to make a move from Florida to Tennessee, I felt a lump. It was in my left breast, and it was almost in the exact spot that I found my last lump. My house was packed up. The moving truck was scheduled. We would be moving to a new state in 4 days, and here I was, with a fucking lump in my breast. Looking back, I would have told my husband right then and there that we needed to stay put until I raced into the doctor’s office to get this seen about while I still had medical insurance. If I had it to do all over again, I would have stayed in Florida while my family moved to Tennessee to get any necessary treatment done in Florida while working for my employer there, keeping my health insurance. My husband and I could have racked up some frequent flyer miles for a bit, and I would have early detected this bastard and gotten it removed again. If I could go back to that moment, nothing would have stopped me from getting this under control before it got out of control.
What did I do, you say? I told no one. I made no appointments. I continued planning my move, and I left my job in Florida, and with it, my health benefits.
After the move to Tennessee, I found work very quickly. I had a new job the first week living there, so I thought, oh good, I can see a doctor by January. No such luck. Something happened in the set up of my health benefits, and the benefits administration department accidentally set me up as “waived benefits”. By the time this was fixed, it was February. A member of the HR department also told me confidentially that I should wait until I reached the 6-month mark as I wouldn’t be able to claim short term disability if my surgery happened prior to that. So I waited some more. I made my appointment for April.
By April, I could tell it was larger. Still the master of denial that I was, I had myself convinced that this was just scar tissue. That’s why the lump was in the same spot as the last lump. I had an overproduction of scar tissue that tried to fill the hole left by the lumpectomy. I couldn’t possibly have breast cancer again. I wasn’t supposed to have it the first time. No one told me that women with a same-breast recurrence within five years have a distant metastasis rate of about 61%. Would I have listened if they had? Probably not. I also remembered the timeline of my first breast cancer occurrence. I had waited 13 months to see a doctor, and it had only reached stage 2. I was going to be fine, right?
When I met with the doctor, she was flabbergasted when she found out that I had been waiting to have this seen since September. She looked murderous when I told her my last mammogram was the one I received when they looked at my first lump in 2017. The disappointment was palpable when I told her I hadn’t seen an oncologist since the last month of 2017, and no, I wasn’t taking Tamoxifen, and no, I never went back to have my targeted radiation therapy after my first surgery. I was embarrassed. I was ashamed of myself. I felt stupid, and the truth is, I was. Stupid, stupid, stupid.
She referred me to the Vanderbilt Breast Center in Nashville, and she wished me good luck. You could tell from the expression on her face that she thought my luck had run out.
You know what? She was right.
I met with a surgeon who also thought this time we were dealing with a recurrence, and it was feeling as though it again was stage 2, just like the last one. I thought, thank God! I got here in time. Then the testing began. Mammogram, ultrasound, biopsy, MRI, all the same tests. The outcomes however were nothing alike.
When my husband and I met with the surgeon, we thought we were going in to discuss what it would take to remove the tumor. I was on the fence about mastectomy, but I was leaning more and more toward it as I figured no breasts, less chance of breast cancer. It turns out I was wasting my time even comparing the two, because neither lumpectomy nor mastectomy were in my future. The first thing the surgeon said when she came in was that we might need to break this appointment down into two appointments because there was so much to go over. I’m sorry…what? Then she got down to brass tacks.
During the biopsy they had a lot of trouble getting a decent image of my tumor. They initially thought it was because of scar tissue. After the MRI, it turned out it was because I didn’t have just one tumor in my left breast. I had two.
They also saw on the MRI what looked to be infiltration in my lymph nodes on the left side of my body, and they would need to do a lymph node biopsy to be sure. To add insult to injury, they also saw a suspicious mass in my right breast that would need to have a biopsy performed, as it could very likely also be cancer.
Due to the potential infiltration of my lymph nodes, a CT scan would have to be performed before any surgeries could be scheduled. They needed to be certain the cancer hadn’t moved to other areas of my body.
Suprisingly, I stayed calm. Finding out that my body was most likely riddled with cancer wasn’t really as much of a surprise as I would have thought. I was the master of denial where my cancer was concerned, so you’d think I was distraught and crying and overemotional about the whole damned thing. I wasn’t. It was as if hearing the surgeon say all of these things peeled the “denial cobwebs” off my eyes to let me see with clarity what I had known was there all along. I had cancer. I didn’t take proper care of my post-surgery cancer self. I had cancer again, and this time it was so much worse.
My husband on the other hand, well, he wasn’t taking it well at all. He started rubbing his hands on his pants in a rhythmic motion. He kept asking what was essentially the same questions: so she can’t have surgery? What now? I grabbed one of his rapidly moving hands, and squeezed it. I told him everything would be okay. It was a lie, and I knew it was a lie right then and there, but it was a kind lie. It calmed him down, and after all, that was all I was trying to do. He just heard that his wife may or may not be dying of cancer. It was a very stressful time.
Apparently, after they sliced and diced the section of tumor they pulled from me, they found out that unlike my last tumor, which was classified as “slow growing”, this tumor was called “moderate to fast growing”. In half the time, it managed to grow two tumors that were a total of 5 cm in size if put together. That means, that it grew more than twice the size of the last tumor in half the time. Being an overachiever is something I like, but I would prefer my cancer underachieving, thank you very much. It turns out that just like fingerprints, every tumor is different with its own unique markers. I just assumed, wrongly, that since the last tumor was a slow grower, this tumor would be too. Someday I am going to remember before I assume the results of what assuming does…
So instead of surgery, it was more and more tests. More mammograms, ultrasounds, needle core biopsies, MRI guided biopsies, and of course, the CT scan.
I was scheduled to meet with my oncologist a week after that awful visit with the surgeon. That appointment was supposed to be simple. We talk about what will happen with my treatment post-surgery. Tamoxifen, targeted radiation therapy, possible chemotherapy, blah blah blah. It was such a rote and routine appointment, I didn’t even have my husband come with me, and since I was going to be at Vanderbilt anyway, I scheduled my CT scan for the same day. CT scans there are rapid response tests, meaning they have the results posted on your chart within 30 minutes. So, I scheduled the CT scan 30 minutes prior to my appointment with my oncologist. We went through the post-surgery options. We talked for a couple more minutes after that. I started to walk out the door. He said, “Wait up. It looks like your CT scan results are up.” I walked back into the room and sat down. Then the bottom fell out of my life. He said, “Well, everything looks clear, except…yeah, it looks like there is a suspicious lesion on your pelvic bone. We’re going to need to do a bone biopsy to make sure this isn’t cancerous.”
I had come to this appointment alone. I had no one there to hold me up, no one there to lie to me and say that everything will be okay. There was no one to drive me home or hug me close. I thought this was going to be a routine visit. I had no idea that I was going to find out the worst: you’re probably Stage 4.
I got in my car, and I couldn’t stop crying. I really believed when I had that CT scan that it would come out negative. I really believed with everything in me that they weren’t going to find anything to report. I was wrong. I was so so wrong. I knew in that moment I had never had any injuries to my pelvic bone that could mimic a cancerous lesion. No car accident that fractured my pelvis. No high school sports accident that could have fractured or otherwise damaged my pelvis. If they saw a lesion on my pelvis, I knew it had to be cancer. I had stage 4 cancer. I called my husband, and I told him what the oncologist told me about the CT scan. He tried to tell me it could be anything. I knew it couldn’t be anything, that it was cancer, but I let him hold onto his hope. I didn’t want to crush that for him. It would be crushed soon enough. I told him I would be going home, but I didn’t want to go home. I didn’t know what I wanted. I just knew I needed to GO. I got on the interstate, and I started to take the exit that would lead me home. At the last minute I found myself going in the opposite direction. I meandered around until I found an exit for the Natchez Trace Parkway. I decided that I would do that instead of go home. I just drove. I drove and listened to music and cried and drove and listened to music and cried some more. I was 42. I was too young to hear that I have something that could more likely as not kill me in 5 years or less. How would I get to have my twilight years with my husband? How would I be there for my kids to help them celebrate all of their milestones? How would I be able to take care of my dad? The short answer was, I won’t. At least, I won’t for as long as I thought I would. My life was shortened by decades with the results of a CT scan. A blip on my pelvis was going to be the harbinger of my death. It wasn’t fair. It shouldn’t be happening. It pissed me off, and it made me utterly despondent all at once.
After I had cried all I could and was a semblance of calm, I started to head home. My husband was amazing. He told me to take all the time I needed. Get a hotel room if you need to. He understood that news like that needed time to process. Once I arrived home, I got into bed and I threw the comforter over my head. I thought I was done crying, but I was wrong, and I needed get it done and over with before the kids got home from school. I wasn’t ready to tell them everything. Hell, I might never be ready to tell them everything. My husband came home early and cuddled up to me in bed, telling me everything was going to be okay. Everything is going to be okay…and poor him, I snapped at him. How did he know everything is going to be okay? What if nothing is okay? He said something then I won’t forget: then we will make it okay the best we can.
If nothing is okay, we will make it okay the best we can.
That is what I have been trying to do ever since. I had the bone biopsy, and my oncologist called once the results were in to tell me what I already knew: I had stage 4 breast cancer with bone metastasis. I didn’t cry because I had already made my peace with it. There will be no surgeries. There will just be treating the disease to prevent for as long as possible it overtaking my insides and eventually squeezing the life out of me. I made a million mistakes on my way to this point, but there’s no point in beating myself up over my stupidity now. All I can do now is try to stay alive as well as I can for as long as I can. I remind myself whenever I feel I’m getting sucked into trivial grievances about life just how fine of a razor’s edge I’m on with just being alive, that the small things fall by the wayside. The clarity of the newly dying is in some ways a gift. You don’t sweat the small stuff anymore, and you do your best to commit to memory every special moment with those you love. You try to keep in your heart every nuance of their faces, every delighted laugh, every special occasion. You want to hold onto everyone you love a little tighter, a little longer because you just don’t know anymore how long you have. You only know it’s going to be shorter than you planned, and shorter than most everyone you know.
If anyone reading this can learn anything from my cancer backstory, it is this: please do not wait or put off having a mammogram or seeing your doctor if you detect a lump in your breast you didn’t have before. I played with that fire, and I most definitely got burned. Don’t do what I did. Be smart, and see your doctor immediately. Just because you may think it’s nothing, doesn’t mean it actually is nothing. Who knows what might have been had I simply done the treatments my oncologist wanted after my first breast cancer surgery? What if I had gone to see my doctor the moment I felt that second lump? Maybe my story would have had a far happier ending than the one I have had I just taken this more seriously. It really is a matter of life and death. Don’t waste your chances like me.