My Story….
That’s such an interesting question seeing as two years ago, I would have thought of it in such different ways. Once you hear the words, “You have cancer,” your story changes so much.

When it’s metastatic, your life is completely changed, and how you look at everything is different. You are different. And no one understands unless they’ve heard the same thing.

In 2020, just as Covid was at a high and people were locking themselves in their houses, I began having back issues. By August, I could barely walk and I knew this was not sciatica as a chiropractor had told me for 6 weeks. I went to the ER on a Monday, unable to take it anymore and needing an explanation. During Covid, you couldn’t have anyone with you, so I was wheeling myself through the doors in a wheelchair, that was a first. The doctor on duty gave me 4 different drugs to take home and try, again reiterating it’s just sciatica. No tests were run. By Friday, September 4 th , nothing was better. It was worse. I went back to the ER. After making me wait for two hours, the doctor on duty again stated it was sciatica, saw that I was there on

Monday and asked me, “What do you want out of this visit?” I was alone, I was scared, and now I was pissed. I told him in very colorful words that I was in severe pain and it was not sciatica.  And that I was not leaving until he ran some blood tests and an x-ray at the least. Something was wrong and I was not going anywhere until I knew what.

He finally sent in a nurse to draw some blood and he ran some tests. I never saw him again.  Within two hours I was moved into a holding room while they checked my insurance and found a bed for me in the hospital. They immediately put me on a catheter, told me I can’t get of bed, and put me on Dilaudid and a liquid diet. I had a female doctor come in and say she wanted to do a full-body inspection and run more tests and bloodwork. She signed me up for a CT, an MRI, and I have no idea what else. I saw that doctor again less than two days later, when she told me we would still need to do a biopsy to confirm, but my test results are all pointing to metastatic breast cancer, starting in the right breast and moving to the liver and spine. And that I had

compressed vertebrae and could not move or I’d risk more damage to the spine. She was contacting an oncologist, she’d worked with for years who she thought would be able to help me. I don’t recall anything I said back. Dilaudid takes away your pain, and the ability to converse, and I was alone. I remember vaguely hearing what she was saying. I remember wanting to cry but not being sure I’d heard what she’d said. But I also remember feeling, almost relieved, to finally know something was wrong and I hadn’t been crazy. And it wasn’t sciatica. I called my husband and told him over the phone what I remembered. He was expectedly in denial, stating without a biopsy that they can’t confirm it’s cancer. I explained that I would be moved to a room, where I could finally also have one visitor a day, and would meet myoncologist on Monday. I remember being excited to finally have visitors. How silly that is but imagine it. For two days, you’re in a hospital bed. You can’t move off your back. You can’t get up. You can’t shower. And there’s no one to talk to. You’re hearing an awful diagnosis, andyou’re confused by drugs. You’re alone, locked away from everyone you love because of Covid,and you don’t know exactly what’s going on or what will happen.

I met my oncologist, Dr. Chisti, on that Monday. I was on Dilaudid and also Morphine and my husband was standing next to me, finally able to visit when I was assigned a room. Dr. Chisti explained that yes, it was suspected to be metastatic breast cancer and we would have to do a biopsy, but the greater concern was that I was in liver failure. I was becoming jaundiced. I needed to start chemo ASAP, but before that, we needed to stabilize my spine, which had two compression fractures in it. The prognosis was not good, and he was not sure how long I would be able to hold off so we needed to get ready for chemo.

I had to have a Vertebroplasty in order to give me more mobility. I had the spine surgery 6 days after being admitted. I had to wait 2 days for that to stabilize. I had the port inserted once I was stable. I had a Lumbar Puncture with Intrathecal Trastuzumab which is where they basically doa spinal tap to test the fluid going from your spine up to your brain, and then inject chemotherapy directly into your spine. I started chemotherapy infusions through a port on September 15 with a plan to do 60 minutes of Perjeta, 30 of Herceptin and 60 minutes of Abraxane. I made it through 15 minutes of Perjeta before they stopped chemo because I had a Rigors Reaction. I recognized this as I’d seen my mother have a few just one year earlier, but hers is a story for another time. A Rigor is where you feel like you’re freezing. You start to shake and shiver uncontrollably, and you spike a fever. Five nurses worked to try to help control my reaction, giving me Benadryl, and covering me in blankets. I remember my husband standing there, and the look on his face which was pure helplessness. I tried to talk to him and explain that it’s a Rigors, and to give it 50 minutes. It’ll go away. It took 56 minutes for the Rigors to pass.

My doctor worked with an allergist and the next day we tried again, with Benadryl, and a higher rate of saline solution going at the same time. I made it through without a Rigors but it was no picnic.

All of this was in the first 12 days of me being admitted. I stayed in the hospital as my oncologist monitored my liver. They had put me in a private room, and allowed multiple visitors in spite of Covid restrictions, simply because no one expected me to make it. I did. One step at a time. One test at a time. One day at a time. I was in the hospital for 30 days. October 1st , I was finally allowed to go home, once I could display that I could manage the three steps going up to my house. After not moving from a bed for 12 days, not walking, not moving off your back to even sleep on your side, and losing 3 inches off of my height due to the compressions in my spine, I had fluid retention in my arms, legs and waist. Such an added perk. Extra weight to get used to.

I had to learn to move around with a wheelchair, then a walker, with what felt like 30 pounds of extra weight. I had no muscle and even getting dressed or showering took ten times longer than it used to and completely took all of the energy out of me. Because I had no movement in my arms and legs for so long, my muscles had a lot to get acclimated to. Of all the things in my month at the hospital, I remember the doctor on the floor being amazing. Dr. Artinian would check on me a few times a day, and I felt a strong connection to him. He was kind, and he was open with everything that was going on and what had to happen next. He would call my husband to give him an update if the doctor’s visit was before visiting hours began. I wish I could go to that floor and show him how I am still standing, and to thank him for all that he did to help me. I remember him and one nurse, Gabby, who was just as kind and would sit with me through chemo to ensure I was okay. She talked with me about how would lose my hair in a month or two, and that I should remember that my hair does not define me, warning me it will be harder than I imagine. She was right.

My chemo regiment now, almost two years later, is TDM-1, which I have no major reactions to other than fatigue. I am blessed to be on that drug now, as that Perjeta was really tough on me through the year I was on it, with continued allergic reactions. My hair is growing back. And I’m fighting. Daily, I’m fighting. I have a strong support from my family. And my friends are dealing with it as each of them is capable. Some check in often, some don’t. But no one knows how to respond. And that doesn’t change in any situation. It’s why cancer affects everyone, not just the person diagnosed. And it changes relationships. That’s something we all get used to. And it’s surprising those who chose to leave your life and those who fight with you to stay.

That’s the beginning of my story. Because it isn’t the end yet. And it’s not the middle. It’s not a new chapter. It’s a new book. And I’ll still think about my story before being diagnosed, but it’s much different than how I look at life now. I need family and friends in my life. Those people that want to be there. I don’t push those who don’t want to be part of my life. I no longer try to spend time with just anyone. I have found new friends who are going through similar things as I am, and though they are far away, they understand that sometimes I just need someone to listen and say nothing and other times, I just need someone to talk about nothing at all. It’s something we all likely understand.

I don’t think about how much time I have left. I think about what I want to do, who I want to see and where I want to go. I work full-time, and I stay busy which mentally helps me. I keep up with my hobbies, like reading. I was sent a book by the kindest woman who is also going through metastatic cancer diagnosis. It’s called There’s No Place Like HOPE. Read it. It might help you as it did me. Keep doing what you love. Focus on the next thing you have to do: the next test, the next chemo, the next radiation, whatever it is. Just get past that. And find your tribe. Your fellow warriors, who are also family and friends who care about you and support you. With all of those people in your corner, with your family and friends, you will keep going.