Forty-seven months ago I received news that would change my life, namely that after nearly a year I would get a life back. Not my life as I knew it or anything that resembled my old life, but a new life that I could make mine. Remission is a beautiful, wonderful word and yet people forget that while it can be permanent, it doesn’t mean that it will be.
I had an autoimmune disease that is so rare, there is very little studies or information about it. The Mayo Clinic and John Hopkins believe it only affects 1 out of every 1 million to 2 million people. After ten months of living in and out of hospitals, chemo, plasma exchanges, dialysis, other infusions, blood transfusions my body finally decided enough was enough. I was at my worst, facing the likelihood of losing my left arm while they prepared to put me on a transplant list since the active stage of the disease had finally passed, when all of a sudden I was better. As in within 72 hours my numbers went from the worst they had ever been, indicating things on the other side of the spectrum of ‘recovering’ to better than someone who had a successful kidney transplant.
At the time my kidney doctor rejoiced and called it a gift. He said when he found out he carried on like a drunk man and had me come in for confirmation tests that I had just thought were routine maintenance. When he first told me, I didn’t react the way anyone thought I would. I was angry, terrified and just wanted to get back on the transplant list. Luck has never really been on my side, and my doctor told me he had never seen anything like this in his 40+ years of medicine. It was nothing he did. Nothing I did. Nothing my treatments did. It was a miracle. A word he and many other people started using.
This was why I was upset. I was told from day one that my best chance was a transplant. I may get fifteen to twenty years out of that, and most of the time it looked like I wouldn’t make it long enough to have the opportunity for a transplant. This ‘miracle’ was just another obstacle the universe cruelly threw my way. I was sure it wouldn’t last and as soon as I became comfortable with it, it would be snatched away again. The reason I survived and did what was necessary when I was sick was because I didn’t process anything beyond facts and what was immediate. I didn’t think about the future, allow myself to cry or stay angry or wallow. And I definitely didn’t turn a blind eye by being ridiculously optimistic as though losing my arm, being unable to work ever again and other circumstances forced on me by this disease, did not bother me. I kept my eyes on recovery and zeroed in on it. It was never an option of if I would get through it, but I never allowed myself to consider what would be left for me once I did. And that is why I am alive today.
It took several months of being ‘better’ to settle in (somewhat) to being able to try to make a life for myself. I met my husband (which I was very wary about, meeting people in general, and would only do so as friends), started my own editing business and made different choices based on my new post-illness outlook. While I missed (and still do) being about to eat what I want, going a day without vomiting, the way I looked before, particularly when faced with the collection of scars that take over a decent portion of my body, there is no question that the life I made after, is far better than anything I had lived before.
Every time I had labs done to check my kidney function, blood levels and the antibody test that basically told me if I was still in remission I would worry, it would be in the back of my mind, tainting everything I said or did until I knew I was all right. After the first year, I got better about this, though my husband who by this time I was living with after fifteen months, (and we had exchanged those three critical words with each other) seemed to get more anxious about them as I became calm. It wasn’t that I didn’t care or wasn’t worried (of course I was!) but I couldn’t focus on it. Depending on the lab test I would not see results for five to twelve business days. That is a long time to be utterly consumed by a ‘what if’ that I had no control over.
As time goes by, I continue to get better about this, putting it in a plastic container, up on a shelf in my mind and not letting it out until I get the results back, in which case I can take a deep breath. I am fine. Last Thursday, I had all of those labs again and this time I can’t shake it. I am sure I am fine, I know sometimes my fear can get the best of me, but I keep seeing my near future self shrugging and saying “well that remission thing was nice,” and looking calm and indifferent, when I think only my husband would know better.
I know it is probably because an infusion center is a part of my regular life again, a complication of the chemo gifting me with a bone marrow disorder. I am sure it doesn’t help that the last kidney function test I had came back with a number I didn’t like. My baseline is 1.2 (creatinine) though my current kidney doctor will sometimes lie and tell me my baseline is 1.3. I am fairly certain he does this for what he believes to be my benefit, but I know the numbers, what they mean, and I keep all of my labs. I am always between 1.12 and 1.24 and rarely hit anything above 1.27, so my baseline is in fact 1.2. My kidney function is checked much more regularly than the antibody test, which they have to send out to some special lab to analyze. My kidneys are checked every four to six weeks, the antibody test only once every quarter (though I can always request it if I have a bad feeling). The last test I had put me at just over 1.3. This, along with my bone marrow condition, readjusting to time in infusion centers, which leaves me feeling like I did after dialysis (physically), and I know this bad feeling is something that can most likely be explained away by modern psychology.
This rationalization isn’t helping me much this time around though. Every symptom of this disease is so generic and mild that to notice it at all would be a feat, but then to conclusively pin it on the disease would be next to impossible. (Fatigue, nausea, vertigo – and all are a part of my life in remission, how am I supposed to determine when there is a pattern of these things escalating that can’t be explained by a number of other things by something as silly as a bad day.) The problem is some of the symptoms seem in that gray area, which I think again is mostly in my head, but with all of them constant, how much is too much?
I want my results back, and I am still waiting. I don’t give the impression that I am nervous and anxiously awaiting answers that tell me I am still fine, but I am. For once, I can’t store it away; I can only pretend that I have.
My new kidney doctor is as wonderful as my original one. I asked him the last time I saw him, what I can do to stay well. As if he knew of a magical list of things to do or not do to lessen my chances of ever facing this monster again. Of course, he didn’t. He told me that every patient he has who is no longer on dialysis, because of a successful transplant has the same worry. How to avoid eventually needing to resume dialysis again. This is certainly a part of it for me – but not the only part. I never want to be on chemo again or have another port put in or a number of physical offenses that I never want to experience. Ever. Again.
With my disease as rare as it is, there are no numbers to lend me comfort. Unlike someone who has had a kidney transplant, they don’t know what the chances are that this thing will come back into my life. They don’t know the chances of me needing dialysis again and if so, when to expect it. The only thing they know for sure is all of the things that they don’t know.
So, this week and possibly some of next I will continue to laugh and help my friends work on their new house (painting, new flooring, etc.) and I will write and read and work and smile and sleep well. But that doesn’t change what is going on inside of me. I have just become a pro at pretending that I am fine. Because openly worrying and letting my fear control me day-to-day is counterproductive and a waste of days.
I am forever thankful for my miracle and even with this constant and imminent question mark hanging over me, would never take it back. The way that I show my gratitude is by never wasting a day. I think many people my age (I am still in my twenties) have heard and understand intellectually that time is a gift and not to take it for granted. But I don’t know how many people actually feel that, know from personal experience just how precious each day is. I do, and even if this thing ever finds its way into my life again there is one promise I will always keep. To never take anything for granted. To never waste a day. To live as best I can, a full life, a happy life. The new life I was given; the life that I made mine.
-DMW
