I am currently sitting in the infusion center as the needle in my arm slowly dispenses Rituxan. I relish this day; looking forward to it like a child anticipating her birthday. After all, its a gift that keeps giving for six months. So, I guess the child would be looking forward to her half-birthday.

Today is the second dose of the cycle. I faired okay after the first. Mainly, I felt tired and fluish for about a 7-10 days. It’s a small price to pay for stability and consistancy in a disease whose M.O. is instability and inconsistancy. It’s also a MUCH preferred medication to Cytoxan-for me. Two doses to a cycle, one cycle every six months.

Knowing that each disease modifying drug (dmd) change means one less option, I hope to get many years out of Rituxan. Each dmd also means a risk-will the new one be as effective as the last?, what are the new side-effects? how long will this one last? All good questions. All questions of which, given my druthers, I would rather not have to know the answers. But, some I know the answers to and others no one knows the answers.

For me, focusing on the present moment is the only way do deal with atypical chronic multiple sclerosis. Thats not to say I don’t plan for my future-I do. I try to focus on the now so as to enjoy my life, my family, my friends. When living with atypical chronic multiple sclerosis it is imperative to focus on the present moment-it’s all I got.

The biggest risk inherent with Rituxan, from my perspective, is the possibility of PML (Progressive multifocal leukoencephalopathy.) Yes…the same PML associated with Tysabri. A few things to consider with Rituxan:

  • Are you JC virus positive? If so, it leaves the door open for the possibility of PML.
  • If JC positive-it becomes somewhat murky-not muddy-just murky. Essentially, the question is: it worth the slim risk of PML for a comfortable quality of life for an uncertain amount of time?
  • What are the other options? When I asked my doc this question there was a pause followed by two meds neither of which were very good options and I subsequently erased them from my memory.

I was told that so far, no patient taking Rituxan for MS have been diagnosed with PML. So, thats good news. My doc has been using it for 5-6 years-a good amount of time for me to feel
comfortable with it.

Yes…wonderful…but, does it work? So far so good. I am completing my second cycle. Quite frankly, I couldn’t wait for me veins to soak up the med. I was beginning to feel a small
slide backwards. Apparantly, it can take several cycles before your body has the necessary maintenance levels of Rituxan. I will see in six months I guess.

Well, the nurses have disconnected me and I will head home to reap the rewards of my day.

MS Improves With Rituxan

September 13, 2013

Almost four months have passed since completing my first cycle of Rituxan. Admittedly, I was apprehensive about trying a new treatment option. My doctors started treatment using the least problematic option, so every change means potentially more worries and less future choices. After all, progressive multiple sclerosis is the giant white elephant in the room- ain’t nobody looking it’s way. Every other week it seems relapsing remitting ms has a new treatment option while progressive ms plods along with bad to worse treatments. Oh, I guess I should just be happy there are treatments. And I am!

So, onto the treatment du jour-Rituxan. Yes, its doing its job. Overall, my symptoms have lessened, I’ve grown stronger, and I remain stable. That’s a good thing. I cannot say that each day or week I continue to see improvement, but my life is noticeably better. I can walk further distance wise, and have more stamina, endurance. If you have read any of my blog concerning my early days of with this disease, then only remaining stable would be a huge deal. But to feel stronger, to have symptoms lessen, to have improved quality of life is truly a blessing.

Now onto the good part. Yes, I said the good part as if improved quality of life isn’t good enough. Recently, I learned that it can take several cycles of Rituxan before garnering it’s delicious full effect. Needless to say I welcome my next cycle of Rituxan. The lack of side effects is also a welcome change from cytoxan and cellcept. Granted the possibility of PML if JC Virus positive is a bit bigger of an issue than say nausea, but PML has not occurred in any MS patient receiving Rituxan as a disease modifying treatment. We all need a good justification every day-that’s mine.

Good and Bad

February 2, 2011

So I have been feeling pretty good lately.  I’m not running any races, well I’m not running.  I have enough daily energy to do what needs to get done.  Essentially, I operate on a low level.  That  is good.  I am happy with that.  I can make a little life for myself.

The bad. Well, I’ve never been satisfied with slowing down or following rules.  Most of the time this rebellious spirit serves me well.  But, when it comes to conserving my energy and keeping my energy at a good level the rebel in me is not serving me well.

Rebellious Spirit, Spirit of the Soul, does help with overcoming the depression, the “woe is me” feeling that a chronic illness brings. The spirit enables you to live happily, find a way to make your life, see the joy in life despite or maybe even because of your troubles.

When this disease, when atypical ms progresses again I will be facing another round of chemo, cytoxan.  If you have read any this blog you know that I have a love hate relationship with cytoxan.  Chemo really helped me, but I was sick; sick through the process.  I want to keep myself as good, as healthy as I can.

The rebel me needs to ssllooww down if that is going to happen.  In analyzing why I don’t slow down, I’ve come up the answer.  I think.  I want to live life, experience all life has to offer.  I don’t want to follow the speed limit and park between the lines when I die.  I want drive 100 mph taking the backroads finally careening into a skid as I stop at the Pearly Gates jumping out of my convertible  tossing St. Peter my keys.  You get the idea.

The spirit is willing but the body isn’t able.  So I hope my spirit finds creative ways to live life without punishing my atypical ms ridden body.

We’ll see how it goes.

The One Thing

January 2, 2011

The secret to success is the one thing.  This isn’t a new idea, but an effective reminder for me. The one thing for me means the one focus.  The one thing I focus on to get me through whether going through steroids, cytoxan, or daily living with MS.

For me, the one thing is my son.  I love to be outdoors walking in the woods, shooting hoops, etc. with my son.  I have a routine, a daily routine I perform from the time my eyes open in the morning before I even try to get out of bed.  Ok, so I press the snooze button a few hundred times before I start this routine.  OR, you could say the snooze button is part of my routine.  I hate alarm clocks.

As I shake the sleep from my head, my eyes, my body I repeat to myself “this is my situation, I cannot change that.  I am grateful for my life especially my son.  I picture my son and I walking through the woods with our dog, or shooting hoops, or talking, even laughing.  Remembering my blessings, realizing how much I still have in my life puts into perspective my atypical MS.  This process also frames my thoughts, feelings, and ideas in a positive light making life a bit easier.

When I was going through cytoxan (chemo) I performed this same routine while sitting in the chair in the infusion center.  I imagined the cytoxan as an elixir that repaired the damage done by MS.  I imagined this elixir giving me the ability to “play” with my son again.  To hike a mountain, climb the rocks on the coast of Maine, ride the ocean waves.  Closing my eyes and really imagining cytoxan as an elixir pouring into my veins seeking out damage and repairing it.  I watched it cover my damaged nerve connections and watched as it repaired these connections.

Yes, I know it sounds a bit weird and different.  But, it works.  I believe I responded so well to the cytoxan and baclofen pump because of this attitude.  Somehow this vision made my mind strong so that it was unwavering during the worst times.  Having a strong, focused mind really helps when the hurricane hits.  Because as we all know the hurricane always hits.  No one is left unscathed in this life, that is just life.  You may hear some people complaining about a cold, about a store being out of their favorite ice cream, or not getting a raise in a few years when they are paid handsomely for their effort. As you sit there listening you may say, “Hey, I’ll take your troubles over mine.”  Yet we don’t.  I like to say, “The devil you do know is better than the devil you don’t know.”  Kind of the like “The Grass is always greener….”.  When you are talking about MS, atypical MS, ppms, “devil” is a much better word.

So, I guess I am saying deal with the issues you have because they are yours and find a way to happiness one thing at a time.  I truly think that is the only to deal with troubles.  We all have them, it is how we use those troubles that determine our happiness.

Dancing

September 29, 2010

It is funny that after a few years, okay 5 or more, with MS you get used to the pace of  life. For me life has slowed down, dramatically.  I am on a completely different schedule than I was before; completely different than most ‘healthy people’ I would guess.  Just when I think, hey I am doing alright, life isn’t quite as different as I thought-bang it happens.  You are made acutely aware of just how much MS has impacted your life.

I’ll give you a ‘for instance’.  I feel better, I have more energy, I walk better, I have more endurance, etc.  You know, you’re living it.  I get an invitation to a 40th birthday party, a surprise birthday bash, for a friend who lives in a nearby state, a couple of hour drive. Immediately I think, ‘yes, I will attend.’  Actually, it was more like YIPEE!  I’ll go.  I can’t wait to go out again.  After all the party was at a rented hall with a live band for an all night party.  Just the type of party I lived for before MS.

I knew better than to drive down just in time for the party.  I mean I still have MS,  I need some rest time before the big event.  So, I drove with hubby in the afternoon.  We checked into a nearby hotel and I promptly took a nap.  I wanted to conserve as much energy  as I could.  Right about now, I realized that I wasn’t quite as good as I thought.  A two hour drive for a 40th birthday bash really shouldn’t be an all day event.  Most people would hop in their car two and half hours before the party.  I planned the trip, the drive, the hotel.

Ok, well I just need to plan a bit more now.  No big deal.  Right.  Maybe if I keep writing it and you keep reading it, it will be true.  Life does not work that way.

So evening sets and we head off to the bash–7:30pm.  here is where I am a bit upset.  I figured the birthday boy would be arriving 7:45 or 8pm the latest.  No, no, no.  The person throwing the party told everyone to be there an hour early. And the band was supposed to start playing at 9pm.  I just lost an hour and half.  There is a big difference between me at 7:30pm and me at 9pm.  At 7:30pm I can talk, laugh, maybe even slow dance.  At 9pm I look like I have had a few too many suds and shooters.  Standing around for an hour or so, I began to wonder how everyone else would fair.  I mean could all of these other people stay up so late. No that is not a joke.  I forget that I am not the norm, I am not the poster child for late 30’s and early 40’s people.

Once the yelling of surprise was over and the band began playing I was amazed.  Amazed that most people had energy to dance.  And dance. And dance.  And dance.  They walked around with their drinks, they talked-sometimes having multiple conversations at once, they danced.  At 10:30pm my husband escorted (read: held onto me so I didn’t stumble into a wall or a person) from the party to our car and into our hotel room.

When we left it seemed the party was only beginning to wind up.  Like the best was yet to be.  Wait, let me say that again.  LIKE THE BEST WAS YET TO BE after 10:30pm.  WOW!

Needless to say my head it the pillow and I was asleep.  We drove home the next day. I was silent.  How could I be so accustomed to MS that I thought I was going to be able to not just survive a late night party, but participate.

My life has slowed down.  I am on a different schedule than most people.  But I like it that way.  And that is good because I didn’t choose it and I can’t change it.  Maybe I can’t dance at 9pm but life is more than dancing.

I woke up today.  I have twenty-four hours that I did not have before.  Those hours may be riddled with atypical chronic progressive MS, but these are my brand new hours. Each day I feel myself gaining strength, not physically, mentally.  My MS deteriorates my physical body more than my mental body.

For me, living every day, well really living HAPPILY, every day requires a strong mental fortitude that sees only right now.  Worrying about future events that might not even happen, lamenting what might have been expends precious energy in a disease that is all about conserving energy.

The future hasn’t happened so who knows what will be.  My energy is better used on the things, events, people here, now.  After all I am sure there will be twenty or more disease modifying drugs(dmd)  for Relapsing Remitting MS before Progressive MS even sees one FDA approved dmd.  Now don’t go yelling at me about minimizing RRMS.  I am not.  It must be very difficult to feel good one day, not the next then feel better weeks later again.  AND to not know when that dip will occur.

I mean the docs and researchers must see the highs and low of RRMS as much more important than the continual decline of Progressive MS.  I would love to wake up once, for one moment without pain, dizziness, low energy, bladder problems, etc.  I see other diseases being fought from the worst debilitation to the least.  But good ol’ National MS Society sees RRMS as an easy way to make money. OOPS!  Did I just say that. Yes, I did.

Ok, back to the moment.  I have these brand new hours and I don’t want to spend them lamenting, and complaining.  Life is too short; I want to be happy. See how easy it is to fall back into discouragement.  Alas, I am becoming happy again.  A cure can’t make me happy, a dmd can’t make me happy.  It can make anyone happy.  Happiness comes from within.  So I was dealt these cards.  I simply need to play the best hand I can.  End of the story.

Playing the best hand you can is easy to say and very hard to do.  Waking each day thankful for the new hours to spend with family, or friends, or quietly enjoying peace is my game plan.  From my window I am able to see trees, plants, birds, insects, sky, clouds, so many wonderful sights.  I love to be outside, in the woods, near a body of water, in the middle of a freshly cut lawn breathing in those smells and taking in those sights.

The things we can’t replicate like sun, breeze, flowers contain intrinsic value and these bring us most happiness.  From my living room window I see my weeping cherry tree.  The pale pink blossoms cascading down each branch was consumed with bees bustling to collect pollen- bee gold dust.  Sitting under the tree I heard the bees’ buzzing-a natural concerto- while watching the bees weigh themselves down with pollen.  Once a bee was so heavy with pollen it waffled away from the weeping cherry tree to some unknown hive.  Because of MS I was able to witness that beautiful event.  I was even able to photograph some of it.

If I didn’t have MS or if I had RRMS I would surely be working and not available in the middle of the day to witness and capture the hardworking bees.  I guess the moral of the story is to be happy where you are because all around you are things about which to be happy.  Atypical Chronic Progressive MS is the proverbial double edged sword.

Living Today

April 23, 2010

As I recently stated I have been in a bit of a funk lately.  Living with atypical chronic progressive MS is difficult.  For so many years I maintained a positive attitude.  Not that I don’t have a positive attitude now.  I am positive that MS is a 24/7 365 day struggle.  Some would say that isn’t a happy attitude.  Ok, I’ll give you that.  But it is a realistic attitude.

Realistically, people hit emotional walls every day.  No big epiphany there.  Some say you can endure anything for a brief period of time.  I will agree with that.  Brief, is the operative word. My brief period of time is different than another.  And living with a chronic progressive disease in which no real disease modifying drug is very helpful and no cure available can be disheartening.

But, you’ll say, you just posted about how much the baclofen pump is helping.  Yes. The baclofen pump does not impede the progression of the disease; it only helps mitigate the SYMPTOMS.  And the cytoxan(used for inhibiting disease progression) is hard on the body and for me short lived.  I completed the cytoxan 1 year and three months ago.  A typical person gets three to five years before progression rears its ugly head.  Being atypical I didn’t even get two years.

See you fight and you fight and still you only move inches.  It is finding happiness in those inches or in spite of only inches  is the key.  If you can endure anything for brief periods of time ( I know I can) then I guess my key is in keeping my time to moments.  Keeping my head in the moment, being happy where I am, knowing it could be worse, and enjoying all that is around me by living today.

After all what is the alternative if not living.  Remembering those things that made me happy-family, friends, hobbies, connections to people.  These really are the enduring nourishments for a life fulfilled.  Multiple Sclerosis can leave people isolated, cut off from former lives and from the larger population.  When you can’t work, can’t lead a “normal” life, you need to work harder to connect with people.  For it is in those connections that we truly live, that we truly find happiness.

This past fall I was feeling like I was beating MS, or that the effects of MS were minimal.  So I went to a 40th birthday party for a friend.  It was a private event held in the evening with a live band and about 100 people. It began at 8pm and went long after I left.  People actually have energy and ALOT of it past 8pm.  I forgot that.  I watched people dancing at 9pm and thought, “Wow, I remember those days.”  I stood with my cement pillar legs firmly anchored to the ground watching people 10-15 years older than I dance and dance and dance.  My mind raced with the songs, choreographing the moves I would have performed had it not been for MS.

That night was the beginning of my unhappiness for I realized that night no matter how good I felt, I would never feel like I did before MS.  I know this feeling is temporary; my mind is strong and my will, stronger.  I live today, I live for today.