The Reality of Remission

Today is my 9-month remission anniversary. I haven’t written much because it has been a really frustrating time. It still feels like nothing has changed. To be honest, the only thing that probably has changed is that I no longer have evidence of disease in my body (no tumors). Everything else has either stayed the same or gotten worse. I don’t mean to sound negative, but that is the reality of remission. At the end of the day, I know that I am way better off because I am still alive with a roof over my head, food in my belly, clothes on my back, and a large support system of family, friends, and my amazing fiance. 

So this is the real deal with remission. It’s going to take a while, so read on if you dare… or if you care.

Yeah, it’s great. No more cancer! So now what? Let’s start with side effects. Everyone is familiar with chemotherapy and radiation side effects. There’s nausea, vomiting, bone pain, muscle pain, chemo brain, fatigue, weakness, hair loss, weight fluctuation, appetite loss, changes in taste, weakened immune system, etc.

But now that I’m in remission…

I still have all of those side effects, with the exception of hair loss and appetite loss. My hair is growing back, but it is super curly and I don’t know what’s happening. I just look crazy. My doctors still have me on a high dose of steroids, which has increased my bloating and appetite. I have typical steroid-induced “moon face” and I can’t stop eating. I wish I liked fruits and vegetables more. I have really been struggling with how I’ve changed physically so I literally holed myself up in my house for a couple months. I canceled all of my social engagements because I just don’t feel comfortable being seen. It’s hard to look in the mirror and not even recognize yourself anymore.

Nausea and vomiting. It is random, just as before. I wake up some mornings and I feel so sick. Sometimes it hits me at night and I can’t go to bed. The day before my sister’s wedding, I threw up four times. There were some days when the need to vomit would hit me so quickly that I would just run outside to my backyard and projectile vomit off the deck. That’s gross. Don’t worry, I made sure to aim at a corner of the yard where no one goes, not even the pups. I just have emergency stashes of vomit bags everywhere now. Don’t leave home without one!

Pain and weakness. I am in pain all the time and no one knows why. Most days, it’s just an achy soreness from muscle pain. But when that bone pain kicks in and you can’t do anything about it, those are the ER days. Then again, all they do is drug you up and tell you your x-rays look normal. So all I can do is sit at home and ice myself up until I am all numb. I don’t know what happened to my legs, but there was a couple months where I could barely walk before I felt like collapsing. I’ve started cancer rehab with a physical therapist to work on all of this but I am still a fall risk. I’ve been on so many painkillers because they can’t figure out the root of the problem. I think I contribute to 90% of this country’s opioid problem. Oxycodone, oxycontin, fentanyl, dilaudid – you name it, I’ve got it. Oh, but the doctor said to just take a Claritin. Thanks.

Chemo brain is so real. I used to have such a great memory. Now, I will tell you the same story three times a day. Justin has learned to cope with this. You may as well, too. I have to write everything down. I have so many lists and journals. But, I have a hard time keeping up with those too because… I forget about them! Or where I put them.

Fatigue is probably the biggest complaint you will hear about from the majority of survivors. It takes at least 3x as much energy for me to do something as it did before. Then, I get tired so much quicker. I’m currently participating in a UNC Chapel Hill research study to see if I can get over this or at least figure out how to manage it. Of course, one of the best things you can do to combat fatigue is to stay active. What a predicament.

My immune system is still building up since I am still post-transplant. I have been sick for two weeks. Normally, this cold would probably have been gone after a few days. There is no amount of DayQuil, NyQuil, Sudafed, hot tea or soup that will help me if I have no immune system to back it up. If I get the flu, that could be hospital time. So please, get your flu shot. 

Not only do I still have these lovely side effects, but I have all these brand new post-transplant side effects! Most notably, my graft vs. host disease (GVHD). I feel like I talk about this all the time, but people still don’t know what I’m talking about. GVHD is basically your body rejecting the donor cells. A little GVHD is good because it means that your body is able to fight back and protect itself from something it finds foreign. It can affect any organ of the body, but generally begins with the skin. I have GVHD in my skin, eyes, mouth, and a little bit in my GI tract. It could be worse. The skin GVHD is most irritating of them all. Not only is it very visible, but it’s like a combination of having psoriasis and shingles. The solution? Steroids! But, I have been on steroids for so long now that they basically have no effect now. Why am I still on them? That is pretty much my only option until we can find a medication that my insurance will cover without me having to pay $6K out of pocket. Isn’t healthcare in America just the best?

The GVHD in my eyes and mouth just dry me out. It’s more manageable than the skin. It explains why you’ll see me blinking more than usual and for long periods of time. It also explains why I’m constantly applying ChapStick or Aquaphor everywhere. The GVHD of my GI just gives me a lot of heartburn and acid reflux.

One of the most hindering side effects are my hand tremors. Some days are worse than others. It’s another reason I haven’t been writing as much because it is so difficult to type sometimes. At least I can talk to my phone. Thanks, Google. It just gets really frustrating when you can’t hold up your own utensils to eat. Sometimes I have to use my left hand to stabilize my right hand and quickly shovel food into my mouth while leaning very closely to the table. I just fling my food everywhere and people look at me like I’m crazy because on the outside, I look fine. This is why I don’t go out in public!

Neuropathy is another fun, new side effect. You know that tingly feeling you get when your legs are going numb? That’s me all the time. It gets really bad in my hands and my feet to the point where I either can’t feel them anymore or they cramp up so badly that I could fall or drop whatever I’m holding. 

Those are just physical side effects. I can’t even get started on the mental side effects. There is always the fear of relapse or a secondary cancer. I find myself constantly checking for swollen lymph nodes. Scanxiety is probably even worse because you’re hoping they are still clear. My last PET scan a month ago came back clear. Phew. And then, just trying to find a new normal. When I think everything has calmed down for a bit and I can start putting some pieces of my life together, something happens and it’s back to square one.

I know everyone has their fair share of problems so I try not to complain too much to anyone, except my doctors and Justin. I know these side effects are just something I have to accept because they’re going to be with me for the long haul. I know survivors who are decades into remission and still dealing with all of the same issues. I was only diagnosed three and a half years ago. It seems like a long time ago, but it’s nothing compared to the rest of your life. So I’m just rolling with the punches and reminding myself everyday of all the things I am grateful for.

I wrote this post so many times over these nine months of remission, but was never able to get through it. I wrote this post partially to vent my frustrations. But, most of all, I want people to realize that remission is not the same experience for all survivors. For me, cancer is not a chapter of my book. Now, it’s an ongoing theme.

It’s never over. Not until we have a cure.

~SL

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