Cytoxan prep

September 25, 2008

In June 2007 was my first chemo treatment. You can read about that experience in my Cytoxan post. I just wanted to note a few things about how I prepped for the idea of cytoxan and continued to prepare each month.

First, anytime you hear the word chemo, you know you are in for a bumpy ride. Nausea, weakness, hair loss, poison. Yep, thats right, poison. More times than I care to even remember, people in the past year have referred to cytoxan as poison. I know it is poison, but I didn’t really want to hear that word while have it was pouring into my body.  Its kinda like having the sad eyes of a cow looking through the restaurant window at you while you’re eating prime rib. You know what it is, but your mind rationalizes it, making it acceptable to eat cow.

That is what I needed to do. Understanding some of the possible side effects was pretty easy. I knew others who have gone through chemo, seen it before. I needed to wrap my mind around it. Also, and this is a biggie, I was not dying, I do not have a deadly disease. This works for and against chemo for ms.

Firstly, because I have ms I got a smaller dose than a cancer patient does. Great, hooray, less poison! Yet, when you are in the throes of being sick from cytoxan, your heart says, “hey is this worth it, I mean we’re not dying here.”  My brain responded with “oh yes, it is so worth it to feel better, and have a huge quality of life boost. Think of your son and hubby.”  If steroids made me feel better for a very short period of time, than why not try something that could make you feel better for a much longer period of time.

So, now it was a choice I was willing to make. Yes, I could be very sick for a few weeks every month for a year, but have a big payoff in the end. Isn’t that what we teach our kids. Work hard now and you’ll see a payoff in the end. Nothing just comes your way, you must work for it. And really isn’t that the joy of life-the journey. I mean we all, WE ALL, sacrifice and suffer in hopes of a payout.  You can insert anything in place of cytoxan and get the same result. Being a woman, I went through nine months of pregnancy then labor and delivery to have a child. Was the sacrifice worth it? ABSOLUTELY!

Keeping a positive outlook was also important for me. My hubby and I spoke those few days before my first dose. He told me not think of the cytoxan as poison, but as good medicine like it is. I did that. We also had a vision going in each treatment and throughout the year of us hiking a mountain. Actually, no, the mountain was not a metaphor of trying to get through the year, but I guess in retrospect that works too. It was what I loved to do. My son and I and sometimes hubby would hike up some of the local mountains. I love the outdoors, love hiking.

So this is what got me through the the year. Or rather a few months shy of a year as I also needed the baclofen pump. I learned to accept where I am. By that I mean I stopped thinking that I shouldn’t be doing this, I shouldn’t have ms, this wasn’t in my plans, etc. Instead, I thought okay, I’m here doing cytoxan right now, that is it. When I began thinking like that, I realized life is pretty good. Seems wierd, but it is the ‘thinking too much about it’ that creates problems. We ourselves put labels or beliefs or conditions on things that make us look at our situation as good or bad. Really it is just where we find ourselves at that moment, nothing more.

Filling in the blanks

September 25, 2008

Okay, so I thought I would go back to the last part 2006. Finally diagnosed in fall of 2006, and set for my first steroid (solu-medrol) in Ocotber 2006. That was a learning lesson. But how long would the effects of steroids last? I was hoping forever. 

Of course, we know that doesn’t happen. However, the docs, as usual, give you the pat answer, ‘Well everyone reacts differently’. Yes, but isn’t there some kind average, a typical time frame, something. No, not really or at least not that they were willing to utter. I guess that is for the best because sometimes if you give a person parameters (read boudaries) then that person conforms to that boundary. The proverbial self-fulfilling prophecy.

I really have learned to live each moment. In a part due to these wonderful docs of mine and in part due to slowing down in general. Learning to accept change (covered that yesterday, so I’ll stop there). Back to the story…

By the end of december of 2006 I began to slide downwards. Well, more like flying downhill on an icy slope with the new sled you just got on Christmas. So in Jan. 2007 (Hooray-its 2007) I saw docs who really pinned down exactly when I felt the slide. Which was about 8 weeks or so after the ‘roids. 

Another course of solu-medrol was ordered and administered in February 2007. Now by this time I had already seen a neuro-physiatrist to assess my walking and aid in whatever way possible. By Thanksgiving 2006 I had two AFOs (ankle-foot orthotics). Or as I lovingly refer to them as my legs. The physiatrist also gave me my beloved lofstrand crutches. Love really has nothing to do with it. I did notice a difference when using the braces and crutches. I certainly was not blazing any trails, but I was able to move around better, last a little longer. But, really it was the jolt of steroids that I had come to enjoy.

Solu-medrol (each time I had the steroids it was a five day course) really gave me a boost. I felt better, not great, but better. The only problem was that it didn’t last. Oh yeah, one other problem was that I took nose dives each time the stuff wore off. I mean it was like in a movie when the elevator is out of control and careening to the basement.

So by April 2007 with the steroids worn off, I was in pretty bad shape looking for another fix. Really, I felt like that. I wanted to feel good again; and couldn’t wait to see my docs so they would give me another course of Solu-medrol. 

My docs had a different idea, which they had alluded to the previous few visits. The idea was cytoxan-chemo. A year long treatment of monthly doses. As I previously shared, other family members have multiple sclerosis, have chronic or atypical progressive ms. So hearing ‘cytoxan’ was not completely new to me, to us (hubby with me every step of the way).

We sat and listened to their plan. Asked many questions. Finally, I asked “If this was your wife…”. Before I could finish the question, the doc said, “Yes, my wife, my mother, my sister, my daughter, my son, myself. This is the course of treatment I would insist they use.” WOW! He was straight forward and unwavering.

Now, I have to say that I have heard people with ms say before, “Seems the treatment is worse than the disease.”  I have never experienced that. I think that if this is your experience than perhaps you are not as bad off as you think. 

Even before we left the docs office that day we (hubby and I without even speaking) were eager to scream “YES! We’ll take the cytoxan”.  But being the docs they are, they did not want an answer then. They gave us info to take home and read over the weekend. I could not wait for monday to call them and get started.  

Why so excited about chemo?  Well because the treatment was not worse than the disease. Within two years of onset I was unabe to do much of anything besides sit on my couch. I have stairs to climb to get to my second floor bedroom. Without help from hubby and son I wouldn’t have made it at night. Hubby and I were getting ready to change our first floor living room into our bedroom. The only problem was my first floor didn’t have a full bathroom. I still needed to climb stairs to take a shower. 

We jumped at the chance to slow, halt, reverse some of this progression. I mean I should have been in a wheelchair, I was too stubborn. I’m too young for that, I thought. So we set out on a year long journey. This was a huge commitment by my whole family, but we stuck together.

Change

September 23, 2008

While waiting at my recent neurologist appointment, a discussion in the waiting room occurred. Several of the people began asking others when their life changed.   Seemed a little odd to me because I don’t know the date when I was diagnosed which is what was meant by ‘life changed’.  It seems that the word ‘change’ has a negative connotation to it. Yes, being diagnosed with MS is not a positive thing. I am painfully aware of that. Wrapping your head around such a significant change can be difficult. There are so many questions and so few answers. Anything that is worthwhile  usually requires hard work to accomplish.  Putting yourself in the best possible position when you have ms does require a great deal of hard work. 

But the whole idea of change is different or I guess has changed for me since being diagnosed with multiple sclerosis. Living in the northeast I watch the seasons pass every year. Seems nature is in a constant state of flux or change. The tress sprout leaves in the spring unfurling their deep greens only to wave about through the summer breeze like flags. By the end of summer their life lived and like a checkered flag in an auto race they wave once last time before turning autumnal colors of red, orange, yellow as the life drains the color from their limbs. Finally falling upon the ground only to turn into fertilized earth giving the trees sustenance once the snows of winter melts.

Nature is constantly changing. I don’t see the trees, or the squirrels, or the bears, or the foxes (you get my drift here) fighting that change. Since being diagnosed with multiple sclerosis I believe that it was my expectation that things should not change that caused my unhappiness, my anger. It is like a chinese finger trap, the more you pull at it the tighter it becomes. If you relax and push inward your fingers are freed. 

Now, hold on a moment. Don’t turn away so quickly or yell so loudly. I am not saying if you just accept ms then all your worries will be gone, or just be happy you have ms. No, no, no, no that is not what I am saying. 

What I am saying though is once I stopped thinking, saying, and believing that ms should not have happened to me. Once I stopped believing that I am a victim of this disease, I became happier, became better able to handle fighting the effects of multiple sclerosis. On my to the grocery store, I bypass a house with a huge field as a back yard. Often I see a three legged dog running around the field. Occasionally, in the afternoons when I drive by this house I see a young girl (6 or 7) playing fetch with that dog. The dog seems pretty happy despite having lost a leg. The dog works harder to run and fetch than any four legged dog I have ever seen.

See, once I said, okay I have ms that is just my reality, I was able to next say okay what do I need to do so that I can be the best for my family. Now, if you have read any part of this blog you will see it took time to be diagnosed and I was pretty down about that. It is not as if I am happy to have ms or happy to hear or see anyone else with this ms. For me, when I stopped expecting my life would be different than it is right now, at this moment, I instantly became happier. I was not so angry, I was not so scared, I was not so tired. 

Of course, that change may bring harder work but at least I am able to work at it. Having ms has taught me so many lessons. Accepting that change happens at every moment, and not fighting against it has helped me greatly. I can put my energy into really battling the symptoms of ms and not battling my mind obsessing about how life should be. I have energy to enjoy the moments with my family.

I am a person who happens to have multiple sclerosis, primary progressive, atypical multiple sclerosis. I have fought my way through dark times to get back to a place where I can be happy. Change is just part of life. Hooray Change!

All in the Family

September 11, 2008

Sometimes life throws you bittersweet moments. I was privy to one these the other day. Returning home from walking my dog, I told my son I was almost able to maintain the “pirate pace” during my walk. The pirate pace is briskly walking for over 30 minutes OR walking our chocolate lab at a pace and length of time enough to thoroughly tire him out.

My son hugged me, told me how proud he was of me. Wait for it-that was not the moment. Here it is. He then said, “Mom, if I get MS I know I’ll be alright. I mean look at you. With everything the past three years has thrown at you and you are as happy as ever and continue to do new (learn to knit, begin writing) things.”

The sweet part is that I am truly humbled by his words. As a parent it is deeply satisfying and humbling to know that I have actually provided a positive model in such a turbulent time. Many adults do not feel as though they are or would be alright during trying times. 

By now, you can guess the bitter part-“Mom if I get MS”.  Yes, yes I know that MS is not hereditary and that genetics play only a small if any role in MS. I am keenly aware of the percentages as well. However, part of the Atypical MS diagnosis for me is my family. Myself, my two sisters, one of three brothers and a niece all have been diagnosed with MS. One sister is ‘classically’ RRMS as her doc puts it. That leaves myself, one sister, one brother and one niece that are Atypical.

So, when my son said “If I get MS” he really means it. He has watched different members of my family become affected by MS for the past five years. At first it was his aunts, then his mom, then an uncle. When his cousin, who is only a few years older than he, was diagnosed with MS,  it became a possibility for him, too. 

Until he uttered those words-If I get MS-I was hoping he didn’t connect the dots. But as a bright teenager he did. He always loved the connect the dots and most other puzzles as well. Don’t get me wrong, we aren’t waiting vigil for the arrival of symptoms. In our mind it is a big IF and down the road in the distant future. We don’t fret about what ifs. We live our life as if we are free of all disease. We know what can happen for both he and I;  that makes each moment all the more precious to savour.

Just Living

September 10, 2008

So, it’s been awhile since I’ve written. I guess I’ve been just living. Enamored with the ease of moving naturally, of walking through a crowd and just being one of them. Not anchored by braces and crutches and spasticity holding me firmly to the earth. I walk through stores, walk through the woods, walk to my seat in a restaurant, walk through the grocery store and no one, NO ONE stares at me wondering ‘what is wrong with her.’

I am just another person living in this world. That is the difference. When you look like everyone one else and move at their speed then you are one of them. Taken at face value as one of them. They cannot tell that something is wrong with me. They cannot tell how hard I fought to get here. They cannot see the pump inside me.

The other day, sitting in the waiting room of my physical therapists office, a man ‘walked in’.  I use the verb walk and immediately you think of long strides, ease of movement, grace, swinging of arms, an almost involuntary muscle movement like a beating heart. Yet this man, in his forties, moved stiffed legged using two canes (not even lofstrand crutches) and each step draining his energy. My goodness, I thought that is how I must’ve looked. I understood this man in a moment. Feeling both grateful and guilty for where I stand now.

Seeing others struggle now, I feel like I must make the most of my well being. I don’t mean going off every day enjoying myself by immersing myself in all the activities I couldn’t do before. I mean helping others. That man, just watching him, made me realize how many other people have helped me. Without them I would not be in the position I am in right now. From my family and friends who wouldn’t let me give up, to doctors who care enough to keep practicing even though they can’t cure you, to past patients who forged new treatments, to strangers with kind words and actions, it is upon their shoulders I rode when I could no longer walk, move forward.

I feel I must make a commitment to help others make their life better so maybe they can enjoy just living too. I would really like to connect with others who have MS or other similar diseases. I know the importance of having supportive individuals helping you through tough times. I feel like  a window of opportunity opened and I must seize it. As my son, who is currently taking Latin, says “Carpe diem, mom, carpe diem!”

A month later

September 2, 2008

Wow, I can’t believe a month has passed since my baclofen pump surgery.  I continue to have the pump adjusted. It is a process like everything else in life. I go for weekly adjustments until we find the perfect dose. Meanwhile, life goes on.

I work with a physical therapist to help strengthen my legs and stretch out my muscles. This time there is light at the end of the tunnel. This is the third endeavor with the same pt. Bless her, she is extremely experienced in progressive ms, understands all that atypical ms encompasses and cares. Most of all she cares.

The last time I saw her, I was getting ready for the pump surgery-back in the beginning of June 2008. She tried to patch me up as best she could until the surgery, but was fighting an incredibly steep uphill battle. Finally conceding that despite her best effort I was losing ground. The best I could do was wait for the surgery, after which she would be of real help. The tears in her eyes as she had this heart to heart with me, touched me deeply. She cares about her patients. Her patients are real people struggling, fighting for better moments. The openness of her concession touched my heart so much that I really felt her pain. Felt and understood the helplessness of her words. She was in the business of making people better and I was the wrench caught in the cogs.

So, a month later with physical therapy script in hand, I sashayed into her office. With jaw dropped to the floor and tears in her eyes this physical therapist welcomed me back with open arms. Literally, open arms. Our smiles stretching from wall to wall. “Now this is something to celebrate! You have made my entire month by walking in here.”  Her words touched my heart. She had helped me out so much in the past, I was glad to see her eager face again.

I barely notice the pump anymore. Once in a while when I move into a certain positions the pump bumps into my ribs. That I feel. Otherwise, not so much. We (hubby, son and I) nicknamed the pump ‘Tigger’ because it keeps me bouncing. Meanwhile, they (hubby and son) jokingly consider me a cyborg. I’ll gladly take that label.

I move so easily now. Still not as naturally as one should move, but so naturally that I can easily forget, if even for a moment, ms has changed my life. Have you ever been caught in a wind that starts at the top of the trees and blows threw you as it sweeps past. I was caught in one of those winds the other day. So what you say. Well I was actually able to throw out my arms and enjoy the sweep breeze because I didn’t have lofstrand crutches attached to my arms. 

We ( I include myself before ms) take movement, simple, easy, graceful, natural movement for granted. The simple beauty of walking naturally, of moving with ease, without thinking about it, without mechanical assistance is something we should all take a moment and enjoy. Really, take a moment a walk, simply walk, take a few steps. Concentrate on just each step. Feel each foot fall, feel the ground, the floor underneath your feet. It is truly a wonderful sensation.

That is probably the greatest lesson I have learned this past month, these past few years living with ms: take each moment as it comes, enjoy every moment, see the simple beauty by keeping your eyes and your mind where your feet are. In this way you are always awake and aware enough to enjoy and live each moment. Good stuff. At least good enough for now.