The post below was written in February of 2017. (11 months into diagnosis). Instead of trying to tell you know how I felt that day when I got “the email” I figured I’d give you the raw and real version; taken straight from my MS journal. I enjoy reflecting and rereading my previous ramblings because often it becomes a great learning experience. This is another reason I write. What seems like an insurmountable obstacle one day, or a “one in a million” chance can become your reality. It did for me. Never count yourself out, never say you can’t do it if you didn’t try. Nothing is impossible; not even a cure for MS. We will get there, I am now more convinced than ever.
Now back to February 10, 2017….
There is no cure for MS. That’s one of the first things the doctor will tell you after rocking your life with those four words “you have multiple sclerosis.” Then they will tell you that it’s actually a very good time to be diagnosed with MS! And you will want to punch them in the face while you’re thinking “are you freaking insane?!?! What do you mean a GOOD time to be diagnosed?!!?” You will think that the doctors are actually both insane AND wrong. This will cause you to be terrified, or at least it did in my case.
But Good news: The doctors are right!!! There has never been a better time to be diagnosed with MS! (Now let me explain before you want to punch ME in the face!)
Since my diagnosis I have tried very hard to identify the positive things that MS has brought to my life or the positive ways that my life has been impacted. And I have to say that I feel truly blessed that my MS diagnosis was made now, in this day and age, in this year.. Well technically in 2016; but it wasn’t 1996 or even 2006, when MS research and treatments were light years away from the advancements that we are making today. When someone told me a few months after my diagnosis that “now is a great time to be diagnosed with MS” I wanted to punch them in the face too. But now I get it. There are options to treat the progression, the symptoms, the flare ups. Hell, there are treatments to treat the side effects of the treatments they give you. The possibilities are endless.
That is the reason that I get up every day and do battle with my own body: because I have hope. I have hope for a better life with MS, a stronger life with MS, and hope that one day I will be able to say that “I used to have MS.”
Doctors are claiming we are almost there. They are cautiously whispering the word “cure”. Neurologists are whispering it under their breaths, while us warriors want them to be screaming it from the rooftops. Every day that I win the daily battle against my MS, I know that there are doctors and researches out there dedicating their lives to finding a cure for this disease. I have hope that they are going to be successful. I have hope that one day there will be a drug or procedure made available to all us warriors that offers us a life without MS and its troubles. And today a glimmer of that hope came to me via email. A few weeks ago I learned about a clinical trial for hematopoietic stem cell transplant (HSCT) at Northwestern Memorial Hospital here in Chicago. After doing some initial research and talking to some people online who had received the procedure themselves I figured, what the hell, there’s no harm in applying. It’s a one in a million shot!
So what the heck is HSCT you are probably wondering? Have you seen those videos where a scientist supposedly discovered a cure for MS using stems cells and some crazy drug cocktail? That is HSCT!!! Explaining HSCT in a nutshell is hard to do because it’s an extremely complicated procedure. It’s actually more of a series of procedures really culminating in the creation of a brand new immune system for your body; an immune system supposedly free of MS! Basically you go through a series of chemotherapy (my first thought yes, was OMG I’m going to lose my hair!), then they stick a giant needle in your neck to suck out blood that has your stem cells in it. Then you go home for awhile to recover. Once you’ve recover to about a quarter of your normal self, you take your bald headed self back to the hospital for more chemo and eventually the injection of your stem cells back into your body. Then they keep you for an isolation period. Because of the fact that the chemo just destroyed your entire immune system you are essentially as susceptible to infection and illness as a new born baby. Once your levels of blood and other essential things rise to a safe level the doctors will release you from your hospital jail cell. Then you will be stuck within the four walls of your house for countless weeks to come. You will feel terrible, you will feel weak, you will likely feel worse than your WORST MS day. Or so the patients who’ve had the treatment have told me. “But it’s SOOOO worth it!”, is always the next thing out of their mouths. It’s intimidating, risky, experimental, not exactly a cure but more of a resetting, and OH did I mention not FDA approved yet?!?!?
After completing my initial round of research I admit that I was just about scared away. But I kept coming back to the word “cure”. It was everything I had been hoping for but no one could offer me. Now don’t get me wrong, I know HSCT is not the “cure” but it is the closest thing to it out there so far! Someone was dangling the first step towards a cure right in my face. They weren’t saying I could have it, but they were saying I could try. I could try and hope for the best.
So last week I submitted the simple one page application (well I did have to add an Addendum page because I’ve had so many MRIs in the past year) along with the written reports of my MRIs…and I waited. I joined a Facebook group for people who have had this treatment or are in the process of applying for this treatment. I read blogs written by people who successfully completed the procedure. I did everything I could to educate myself; as I usually do when anything new develops related to MS.
Today I got an email from one of Dr. Burt’s nurses saying that they would like me to come in for a formal evaluation!!! I’m am remaining VERY cautiously optimistic because I know there are about a zillion steps between that email and me going through with the actual procedure. But on the inside I’m doing a happy dance. I got tears in my eyes just reading the email despite the fact that I KNOW I’m still super far away from this dream becoming a reality.
This email was my hope manifested into a physical form. Finally! Honestly, I think what got to me the most, was that this email was the first GOOD news I have received in…well…basically…EVER since my diagnosis. Every time a doctor or nurse calls with results of my most recent blood test, MRI, or other test/procedure that my body is constantly being subjected to, the results are always at least partially negative. Whether it’s new inflammation, a new lesion, or a positive blood reaction, my MS is constantly outperforming my body; at least on paper anyways.
But this time my failing body is actually a positive thing. I am “sick” enough to be considered for treatment but “strong” enough to be considered a good candidate for a successful recovery. It’s a double edged sword that’s for certain. And like I said, I’m only on step one of one million. But I’m moving on to step two instead of heading back to the drawing board. That is a victory over MS. And every victory against my MS, large or small, deserves to be celebrated. As I spend my days working through step two: gathering medical records, completing additional applications, and furthering my research, I am hopeful for my future. Before receiving this email my hope for a cure was really only a dream. Now I see before me a step by step approach to a possible “cure.” Yesterday I did not have that. Yesterday all I had was the hope that today would bring me closer; and it finally happened. So I will keep on hoping.
Today I will hope (again) that tomorrow will bring me closer to a cure. Every day I will carry that hope with me because when you live with MS you know that there is no telling what the next day will bring. (Hell, you don’t even know what the next hour will bring!) Living a life of such uncertainty can drive a person crazy, but if you keep the hope in your heart that one day you will a life free of MS, it makes the daily battle worth fighting.
For those of you that are reading this and thinking that is an impossible dream, I will not try to convince you otherwise. MS is a snowflake disease which means there are no two MS warriors alike. So yes, maybe you will never live a life free of MS. (Maybe I never will either.) But that is the best case scenario; a second chance at a life without MS. You know what they say, “shoot for the moon and you’ll always land among the stars.” If I can’t go back to living a life without MS, maybe I can at least get a few years of remission.
If you feel it’s too far fetched to hope for a cure, that’s ok. I have enough hope for all of us! Instead, have hope for a better life with MS, a stronger life with MS, a happier life with MS or a more fulfilling life with MS.” Just have hope, in something or someone.
Hope is an incredibly powerful thing. Every minute of every hour of every day….I hope for a cure for Multiple Sclerosis. Today I took one step towards that.
Marilyn GUY says
I think you have a fantastic attitude. Keeping you in my thoughts and prayers. I’m proud of you for being willing to take steps needed. You don’t know me but NOLA and Bob were very special to me and I have met many of your aunts etc . God bless you.
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