Signs From Above

I’ve always liked all sorts of music, nothing in particular, but in high school, a friend got me hooked on county music. I had an Alabama tape, yes, the tape, and the lyrics “all I’ve really gotta do is live and die, but I’m in a hurry and don’t know why” keep coming to mind the past couple of weeks. I think death has been on my mind a lot this week, and I start worrying and wanting to get everything in order. The lyrics comforted me. All I really have to do is live and die. Why do I feel I have to rush to get things done and get everything in order? All I have to do is live and die.

This entry is going to be a doozy. I have had so many emotions the past couple of weeks. They’ve definitely all been heightened. My daughter heading to college and the death of Olivia Newton John both affected me much more than I’d anticipated.

I’ve always admired the way Olivia Newton John faced her cancer battle. She dealt with it with grace and positivity, and she learned lessons she was thankful for. I like to think I have lived my cancer journey the same way. Her journey was so long that I always strived for mine to be too. She gave me hope. I almost feel like I beat this disease, and I forget it is terminal and will come back someday. And Olivia’s came back. That hit me when I was treading water in the pool, my happy place, so it was strange to have some big feelings hit hard. But the pool is also great for silent thinking time, and all my emotions just hit me, and I had a good cry. I realized the reality of this disease. I can be at peace dying from metastatic cancer and dying, but I don’t want to die. I am entering a new phase of life as an empty-nester, and I am looking forward to finding me, outside of being a mom, again, and carrying out my goals and dreams again. It was the first time I admitted to myself that I don’t want to die yet. I’ve always looked at my battle as it is what it is, and I have to deal with it. I can choose how I’m going to deal with it. I will do what is Gods will — live or die, will follow Jesus. But, I don’t want to die yet.

I’ve also had big feelings about my daughter leaving for college. We took her to school this past week, and I think both she and I did really well with our goodbyes. I see her thriving in the mountain setting and with her awesome new roommates and friends.

As a special gift, I created 100 envelopes with things like OPEN WHEN … you need a hug, make a friend, meet someone special, survived your first week of classes, etc. I labeled one: Open when you’re missing Mom. I put the lyrics to Suzy Boggus’s Letting Go in the envelope. I realized that letting go of my daughter to college will help me in letting go of her, and everyone who is and has been special to me, when it is time for me to let go of my life. And it will help me let go of my life when I have to.

It was really physically exhausting moving my daughter into her dorm, walking all over campus, and all-day shopping. Lots of walking, lifting and climbing stairs. I had to nap every afternoon. I was really pushing myself, but I wouldn’t have it any other way. It made me realize how much I push myself daily to keep up with my pace of life and to keep doing everything I want to do in my days. Whenever I complain about being tired, people tell me that they are so tired too. But chemo tired is not like anything someone who hasn’t gone through it can understand, and it’s really hard to explain. It’s like nothing else I’ve ever experienced. It is complete physical exhaustion. It is being worn out, unmotivated and unable to keep up with simple daily tasks.

My daughter asked me to finish the cookbook I am working on for her. I feel like I am never done with it because I want to keep adding recipes. So, I decided to publish it as it is, and call it Volume One. I’ll start Volume Two when I get home.

When it came time to say goodbye to my daughter, there was a vibrant, magnificent, full rainbow over the mountain behind her apartment. I took it as a sign that everything was going to be just fine for both her and me. And get this … I kid you not … when we were driving back to the hotel, Alabama’s All I Really Gotta Do Is Live and Die came on the radio. The song that was playing in my head the past two weeks. The song I hadn’t heard in decades. I was oddly happy and excited for my daughter, who I could see smiling and thriving in her new home, in her mountain environment, and not sad and crying. I was fine, and I feel like everything will be just fine for her and for me.

Before we left, I was able to talk to my oldest son about how I’m doing. He worries the most about me. I told him I was happy I have made it this far and that I have made it to the point where all my kids are grown and on their own. He talked about how sad he’ll be when I die, and I was glad he was able to express his feelings about it to me. I didn’t mention cancer to my daughter this trip. But I know this may be the last or one of the last times I could see her. It makes me so sad, but I really liked her roommates’ moms and know they’ll be there for her and take good care of her if something happens to me while Aleks is in college.

Overall, I made it through this trip just after having a chemo treatment. I made it physically and mentally. And it was a great trip.

The only other things I have to write about — I have begun to get the nauseating metallic taste in my mouth for a couple of days after treatment. This is easily solved with Jolly Ranchers. And I read this article about what it means to be living with metastatic cancer, and it is really well-written, so I thought I’d share it so you can see what it also means to me to live with metastatic cancer.

I will update again from chemo. Stay safe and healthy, everyone!

What It Means to Be a ‘’Lifer’’: The Perspective of a Stage IV Cancer Patient 

By Danielle Thurston

March 5, 2020

When you hear the word "lifer", who do you think of? Perhaps it is an inmate, a criminal. Someone who is never getting out of prison, never returning to a life of freedom.

"Lifers"

The term is often used for other people, too. They aren’t inmates, and they aren’t in prison. But some might argue they, too, are stuck in a prison of sorts and never return to a life of freedom. They are mothers, fathers, teachers, lawyers. Your wife or husband. The supermarket cashier, the restaurant server, the school nurse. Everyday people, you see all of the time. You see, typically people with stage IV cancer are also "lifers".

"Lifers" have endless cycle of scans and treatments

"Lifers" are never truly free from the endless cycle of scans and treatments, biopsies and lab work. For most people with early-stage breast cancer, treatment eventually ends and they return to their lives. Hair grows back. Wounds heal. Scans and oncology visits gradually decrease. The distinct scent of rubbing alcohol and the taste of hard candy become distant memories.

Picking up the pieces of their old life and build again

Find a new normal, while always cognizant of the fact cancer may return. Every cough, every headache. Always wondering. Fearful.

According to advancedbreastcancer.net, 75% of people living with metastatic breast cancer progressed from an early stage of the disease. What does life look like for them? How does one accept that their treatment will never end-that they are a "lifer"? Metastatic breast cancer patients are often asked, "When do you stop treatment?". The simple answer is; never.

Different treatment options for "lifers"

The treatment will most likely change over time. It could be chemotherapy, immunotherapy, targeted, hormonal. It could be standard of care or clinical trials. Treatment for metastatic breast cancer varies significantly based upon a variety of factors including the location of metastasis and subtype, but the one constant is that patients are usually on some type of treatment for life.

Many "lifers" take chemotherapy that comes in a pill. They take it at home and have little to no side effects. Other "lifers" go to the hospital weekly for IV chemotherapy and keep their hair. Some are on different chemotherapy and lose it, or "cold cap" to keep their hair.

In many cases, the more invasive the treatment, the more of an impact it has on your life. This can affect your ability to work, travel, maintain your home and relationships. It can affect everything.

Lifers see the world differently

Living with stage IV breast cancer means that your world looks different. Different from before your diagnosis, different from those around you, different from how you planned. Just...different.

You become much more aware of time.

Instead of thinking of how much something costs monetarily, I think of how much something costs with my time. That is more valuable to me than anything now. It is precious and sacred.

Making and maintaining relationships can also be difficult.

Keeping your friendships and romantic life healthy and strong can seem impossible. Why? Because it is very easy to feel misunderstood, disconnected. Like even those closest to you do not understand you. Your plight, your challenges.

Sometimes your world can seem very small and restricted.

Longing to escape the prison of hospitals and scan machines, the shackles of flimsy ID bracelets and protruding IV tubes, there is no place else you would rather be than back in your old life. When you were...free. Not tethered to the life of a forever cancer patient. A "lifer".

The upside

There is, however, an upside to this sort of life. A few, actually.

One gains a unique perspective about themselves.

You learn what you like, and what you don’t. What endeavors are worthy of your time, and which are not. I no longer hold space for anything that does not serve me.

It is easier to let go.

I have let go of anger, bitterness, resentment, guilt. My life is kept simple. I keep what is important to me, and let the rest go. It is enormously freeing.

The true meaning of gratitude.

Yes, we are grateful. Immensely grateful! I am grateful every time I have a new treatment option, every time I get a good test result, every day I am alive! When I get to wake up on another Christmas morning, blow out the candles on another birthday cake, pack up my kids for another family vacation, I permeate gratitude. I know despite being a forever cancer patient, a "lifer", that I am still one of the lucky ones.

Life sentence

Living with stage IV cancer may seem like a death sentence, but it can actually be a life sentence. Upon further reflection, the hospital is not my prison, rather, it is my haven! It is my safety, my protector, which keeps me alive. While I may be a "lifer", I think that can-in a way-be a good thing. I know what I want, and learned to rid myself of what I don’t. My time and energy are no longer squandered. I cherish everything and understand the true meaning of gratitude. Some people will never get to live their lives in such a meaningful way that I live mine. It may not be the kind of life I wanted, but it’s mine nevertheless.

If I am going to be a "lifer", I may as well be a happy one.

Editor’s Note: We are extremely saddened to share that on Friday, October 29, 2021, Danielle Thurston passed away. We know that Danielle’s voice and perspective continue to reach so many. She will be deeply missed.