05 Jul, 17

A note to caregivers from a recent cancer survivor

If you’re reading this, your loved one, family member, or even friend was diagnosed with some type of cancer. I know exactly what you’re thinking. You’re asking yourself why such an awful thing is happening right now. You’re thinking there must be a mistake. You can’t wrap your head around it. You’re in denial. You will probably be in denial for a period of time, but don’t worry, even though it seems horrible right now, this too shall pass.

Not only is your loved one’s world falling apart right now, but yours is too and I completely understand that. We may not realize this at the time that everything is happening, but one year later, I get it. I understand you. The most important thing that I can tell you is that you can’t let everything fall apart, no matter how difficult and scary it gets. You have to be strong..for yourself..and for us. Sometimes we mistake our family, friends, etc. breaking down..with uncertainty and fear, and there must always be hope. We don’t know what’s going on, and we don’t know if our treatment is working or not. We need hope. That’s what gets us through the day. Don’t forget, this too shall pass.

At the beginning of my diagnosis, after I was released from the hospital, I fell apart. Completely and utterly. Physically and mentally. I can’t really explain to you exactly how it feels to be given the full time job of fighting for your life, because one year later, I look back and I truly have no idea how I did it. Know that things that are said to you during treatment should not be taken to heart. Trauma causes irrational behavior, and this is obviously a very damn traumatic period of our lives. This too shall pass.

Chemotherapy causes side effects. We know of the usual, hair loss, fatigue, vomiting, nausea. Please don’t get scared when these things happen. Please don’t get scared when even more serious side effects take place, because in certain regimens, we need these drugs to stay alive. I lost almost complete feeling in my hands. I couldn’t even pick up a pen and write. I developed foot drop from the Vincristine/Procarbazine combination in my chemotherapy. I literally could not walk. There is a solution to almost everything and our doctors will figure it out. Don’t worry, this too shall pass.

Stages of cancer, they don’t mean anything, as long as you’re willing to look for light in the darkest of places. I don’t care what any doctor says, there is always hope. I was Stage 4 when I ended up in the ICU. I had cancer in every organ of my body. My first hospital said that they couldn’t treat me. I was 28 at the time and dying. I had 2 cycles of immediate salvage chemo. I went into remission. After the 4th cycle, my Deauville score went from 1 to 4. Nothing will make your heart drop like this. At that point, a transplant wouldn’t work, if I wasn’t responding to salvage chemo anyways. I had a grueling 20 something sessions of radiation to essentially my entire body, and two more cycles of chemo. Almost one year later, I’m still here. I’m still in remission, radiation burns all over my body and all! Those feelings of uncertainty and hope are temporary. This too shall pass.

Life after cancer isn’t exactly easy. Once we enter remission, it’s sometimes hard to accept. Most of us spent a year, or even years fighting. Life went on when we were in treatment, and this can be one of the most difficult things in the world to understand. To remain stagnant for such a long period of time, then be thrown back into the real world without our cancer center being our comfort blanket is very freaking hard. But just remember, remission for us doesn’t necessarily mean it’s all over. But don’t worry, this too shall pass.

We will have scanxiety and serious relapse scares. And we will have them often. Most of the time, they are just scares. Be patient with us, we’re doing the best that we can. I can’t finish this paragraph with “this too shall pass”, because I have a scan coming up at the end of the month, and I would be lying to you if I said I’m not scared and won’t have a breakdown before then. Hehehehe. (Dr. Lossos, expect a call from me before my scan! Just kidding, you haven’t heard from me in awhile, let’s keep it that way.)

Life will never be the same after cancer. You will never be the same, and your loved one will never be the same. For the majority of us, we understand how short life is and how quickly it can be taken away. This makes us live more in the present, and never take a day for granted. So for those of you fighting (you care givers are fighters too!) hang tight. There will be light at the bc of the tunnel. Never give up, and never give in. If you don’t believe in miracles, you will never find them!

Cheering for you,
Your Stage 4 Lymphoma Miracle (for real, I died and came back to life!)