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When I Realized I Wasn't Getting a Chemo Graduation Certificate for My Lupus

Today was my last day on a chemotherapy drug used to treat my lupus, which can be used to treat other forms of  autoimmune diseases and cancers. I have been on this treatment for six long grueling months due to the lupus attacking my brain, spinal cord and nervous system. As I sat down in my infusion chair to receive my treatment at the cancer center, a man who was sitting across from me asked, “So, what kind of cancer do you have?” I said to him,”I don’t, I have lupus.”

He looked at me with a blank expression, as I tried to explain to him what lupus was. As it turned out it was his last treatment as well, but for a cancerous tumor in his lung that almost took his life. We talked about everything we have been through, how being on chemo and just being sick affected our lives. We talked about how we take nothing for granted, such as our health, and how it changes your entire way of thinking. We both agreed that we are blessed to be alive and that we appreciate the smallest things in life now and how others take having good health for granted – just like I know I use to before becoming ill.

Although we were there for different reasons, we had a lot in common. When he was done with his treatment all the nurses came over with a certificate and they all sang to him, as his wife took pictures since it was his last day. I was so excited for him! He walked away as he waved to me and said, “Good luck.” I replied, “You too! Hopefully I won’t see you again here!” as we both laughed.

I told my husband and daughter to get their phones out since it’s my last day of chemo also, and they would probably sing to me and all that fun celebratory stuff. I wanted to remember this important milestone.

Well, when I was done with my treatment, nothing happened…That was it. No nurses, no celebration, no certificate, nothing. I asked my husband jokingly, “ Hey, where’s my party at?” He said, “Sue, you are on their books to receive chemo indefinitely, you don’t technically have a last day even though this is your last day of this medication.”

I sat in my chair feeling like I was just defeated. It wasn’t the fact that I wasn’t getting a certificate or get to have all the nurses sing to me, or to take pictures. It was the fact that I will be on some form of chemotherapy indefinitely.

After this medication, I’m set up to do another, for an unknown length of time. I was so upset that I cried and at that moment I felt hopeless. Then I was mad. I wasn’t mad at God, or anyone specific, just at my situation. This wasn’t new news either. I knew that I was going to be on some form of chemotherapy possible forever to treat my lupus, I just think for the last six months my mind has been on autopilot, feeling numb and not soaking in, mentally.

I only have been dealing with my lupus diagnosis for four years now and it had progressed rapidly. It was in that moment that it dawned on me, I don’t get a “last” day, or a prognosis on anything. I’m just scheduled for chemo to manage my disease, and no one knows what is going to happen.

Will I get better? Will I have to do this medication again? When can I stop coming to the oncology center? Not one doctor knows.

Autoimmune diseases do not work that way. You can not predict the path of an autoimmune disease. You manage it with the best options that is available for you, there is no cure. So, I just have to tell myself that everything will be OK, live for today, and for the moment. Do not worry about the future, do not worry about everyone else, and what their path is. Living with lupus or any autoimmune disease is not easy…Everyday is deserving of a certificate! I made it another day!

There is a quote that I came across today, “It doesn’t matter what others are doing, it matters what you are doing.” Remember that – or you will feel defeated.

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