Was it worth it?

May 20, 2010

Recently, on my Cytoxan post under the category of Chemo a comment was posted asking if it was worth it in the end.  Cytoxan is a chemotherapy treatment for PPMS(other diseases as well) .  As you all know Primary Progressive Multiple Sclerosis (PPMS) has few treatment options.  Of course when I say “treament” I am referring to disease modifying drugs.  Symptom meds are abundant for all types of MS.

My treatment plan called for twelve treatments-once a month for a year.  Essentially, I gave a year to this drug in hopes for three to five or more good years.  I am going on two years, but I have noticed a small slide downward recently.  After some steroids and other med adjustments I am feeling strong again.  Yes, I was somewhat disappointed that after only a year and half, the disease is rearing it ugly head.  But even with the minor setback I am still much better, feeling stronger than before the cytoxan.

So the question posed is “Was it worth it in the end?” YES!!!!  I have learned and continue to learn many lessons thanks to PPMS.  One important lesson learned that I cannot stress enough is when dealing with a disease that has no way to positively be diagnosed, nor treatment options of any guarantee than the idea of popping an aspirin and being done with it are OVER!  The more difficult a disease the more difficult your treatment options.  That is a fact that must be accepted.  Once accepted than the idea of a year of cytoxan is at least an option.

Don’t get me wrong.  I am not advocating everyone rush to their doc’s office and demand cytoxan.  It is an individual choice offered at a time when there are no other choices but to succumb to the disease.  Succumbing to the disease was and is not an option for me.  Think of the place you must be  for the  a year of monthly chemo treatments as the preferable option.  And the caveat is no guarantee that in the end you will be any better than before you began.  Of course, that is not entirely true as cytoxan has been used for twenty or more years in combating PPMS.  So there is a history to hang your hope upon.

If you find the treatment you are currently using is worse than the disease, and you are not feeling any better than perhaps that treatment is not for you.  On different ms forums and meetings,  I hear people talking about going off this med or that med for a respite. They find they need a rest from either dmd’s(disease modifying drugs) or from symptom meds.  I have never found this to be the case.  I want to scream, “MAYBE YOU AREN”T AS BAD AS YOU THINK!”  If you can go off your meds and feel better than on them that should be a wake-up call.

Now, I know what you all are thinking.  When I went through a year of chemo there must have been times when I wanted to stop, to take a break.  No. No there wasn’t.  I had friends and family telling me I should stop because I felt sick and weak from the chemo.  But, I knew going into the treatment it would be difficult and the payoff would come after I was done the treatment.  I knew that because me docs explained that to me.  Also, I did notice improvement along the way.  I was becoming stronger both in instant strength and endurance even though the chemo weakened me and made my stomach nauseous all month long.

The second lesson learned from PPMS is that a strong mind is necessary to successfully deal with this disease.  Atypical acute PPMS is not for the weak minded.  I slipped earlier this year in giving in to mental weakness.  After years of dealing with this disease as every day is a fight to feel good. I found my strength again. I find my strength in enjoying my family, my friends, watching a bird, admiring a wildflower, enjoying the moment I am in as that is all I have.  There are no guarantees and no expectations so all I have to do is enjoy this moment.  Thanks to cytoxan, the baclofen pump, past PPMS patients, docs, family, friends, etc. (you get the idea,  we are never alone, we are connected to everyone and everything) I can enjoy this moment as it is worth it in the end.


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.


July 12, 2008

Currently, I am migrating from Cytoxan-chemo-to CellCept. Yes, cellcept is usually used for transplant patients, but it is an immunosuppressant; therefore, helpful in multiple sclerosis. I am taking cellcept as maintenance therapy following my course of chemo.

Usually you start at 250mg (one pill) and after months, yes months this is not an exaggeration, you end at 2000mg. This means eight, EIGHT,8 pills a day. Of course, that is in addition to the multitude of other symptom meds you already take.  

But it works. Yep, thats right it works. For how long, I don’t know but I’ll take it. And I’m happy to have something that works. Even though it means even more blood work. After all the Cytoxan infusions, mere blood work is a joy to undergo.

I am only on the first pill. I increased to two pills a day, but my white blood cells plummeted so I had to drop back to one pill a day. Looks like this could take awhile.  

Having ms, atypical ms, primary progress ms is like waltzing or a good polish polka.  You take a few steps forward, spin, a few backwards but never end up where you begin.  If it is done right it is fun.  Not that ms is fun, but life is really what you make it.  There are no guarantees.  You happiness is all about being in the moment, moment by moment.  With that in mind, no matter where you are, or what you are going through, life can be good.

Chemo Follow-up

July 6, 2008

Now six weeks since my last Cytoxan infusion, I feel pretty.  I continue to strengthen, awaken back to normalcy.  Not just in body, but mind as well.  No longer am I in the “Chemo Mind” (routine of mentally preparing for the next infusion, while tolerating the ever overwhelming accumulation of physical fatigue).  I walk among the living. 

Feeling like I emerged from a cave, my year long retreat, I enjoy each moment.  Thanks to the Cytoxan, my docs, the chemo nurses, all who walked this path before me, my hubby, my son, my mom, my sisters, my brothers, my friends, the kindness of strangers (Hey, I could go on forever-but I won’t) I FEEL BETTER. STRONGER.  

I know there is a disability scale, but I never asked where I was on that scale or even how it worked.  I didn’t need a scale to tell me how I was doing. Living life told me that.  As a result I don’t know numerically how much I improved.  Again, I don’t need a scale of arbitrary numbers to tell me that.  I improved greatly in every area except spasticity as evidenced by my past and future posts “Chronicles of ITB Pump”.

To give some taste of where I was before the chemo.  I have exactly twelve steps to climb from my first floor to the second floor where lies my bedroom.  I could not climb those stairs without my husband.  We were making plans to convert formal living room into my bedroom.  Not a big deal really, but considering that only two years prior I was taking those steps two at a time even at midnight after awaking at 5AM that morning, it was a BIG DEAL.

I could not touch my nose.  My index finger landed on my face, but not my nose.  Why is this a big deal? Well, because that was just a test the doc performs to analyze coordination.  Do you know how much coordination it takes to shower, get dressed, walk, eat, prepare food.  I think you see where I am going.  All these tasks were problems for me to complete.

Walking was a big problem for me.  Using two forearm crutches and awkwardly uncomfortable (putting it mildly) plastic ankle foot orthotics(AFOs) barely enabled me to get around my house.  Whether I parked in our under house garage or in our driveway, a mountain of stairs stood between me and my house.  Now, even though spasticity is an issue, I have the strength to tackle that mountain.

The end result is this:  My quality of life, my family’s quality of life has markedly improved.  My health in general has Greatly Improved.  Even my blood pressure which pre-MS was “perfect” (docs told me) to post-MS on the “high side” (again docs told me-nothing to worry about considering) to post-chemo is currently “normal-perfect”.  GOOD STUFF!

Ten Months Later

July 5, 2008

So May 23, 2008 was my last Cytoxan infusion.  Yeehaw! After ten months you no longer have two good weeks.  At about month six your body has had enough.  But you still must persevere because the situation demands it.  Your alternative is to do nothing, give up.  Watch your body, yourself, wither, weaken.  Watch your hubby, son watch you wither, weaken.  NOT AN OPTION!  NOT FOR ME!

Earlier, I mentioned my treatment plan called for twelve months of chemo, Cytoxan.  Unfortunately, my spasticity hasn’t improved.  In fact, after an unsuccessful round of Botox injections to my calves my docs and I determined that ITB (baclofen pump) is my best option.  My hips and torso are so spastic that I cannot bend, dress myself, reach over my head (to get into cabinets, to get dressed, etc.) or walk very easily.  The pain is very, very bad.

The Botox loosened my calves enough for my knees to bend, but the problem is my hips and torso don’t move.  See, Botox only works on one muscle. All my muscles from torso to feet are spastic.  I guess the question becomes “Then why try Botox?  Why not just have the pump implanted?”

Good questions.  Answer:  Insurance companies won’t approve the surgery until all other options are exhausted. That means that even though in December of 2007 when I first saw my neurophysiatrist and she told me the pump is what I need, I won’t get one until the end of July.  You can follow me through my journey with the baclofen pump by reading the “Chronicles of ITB Pump” posts.  

Basically, I stopped my chemo to get the spasticity under control.  I now follow up on Cellcept, which is an immunosuppressant. Cellcept is usually used for transplant patients as assurance that their body does not reject the implanted organ.  It is all used “off label” as a follow-up treatment for Multiple Sclerosis.

Cytoxan 2

July 1, 2008

Well the first two months of a twelve month treatment with Cytoxan were unremarkable or so I thought.  After the second treatment, I became extremely dizzy.  Vertigo is a symptom I struggle with and was a presenting symptom.  For several years I struggled to keep my world still.  Now, I take the moment as it comes.  I realize that vertigo is part of my life.  For right now I cannot do anything about it so I live with it.  

Turns out the Zofran (nausea meds) given during the Cytoxan infusion causes dizziness.  Great!  We increased the Meclizine hoping to get the vertigo under control while changing the nausea meds.  The vertigo I dealt with is fully disabling.  I mean make my way to the couch and sit.  If I got up to move it felt like I was walking through an amusement park fun house that spins.  I flew off my feet, crashed into walls, fell to the floor.  This didn’t really help that nauseous feeling.  

We substituted Compazine for Zofran because it was a different class of meds whose side effects didn’t include dizzy.  Interestingly,  Zofran stops the stomach from producing an enzyme that induces vomiting. Why dizziness is a side-effect, I do not know.  Just interesting how Zofran works in your system.

Compazine; however, works in the brain.  It stops the messages from your stomach that says, “Hey, some strange substance in our system!  Quick, vomit!  Get rid of this!”  Again, no dizziness.  Good stuff.  Well, by now you know what’s coming.  Other side-effects. Also gem #4:  When you deal with chemo, or really any hard core meds then it really is about tolerating the side-effects.  I don’t think at this point there is ONE med that doesn’t have some kind of side-effect.

Compazine put me to sleep.  I mean sslleeepppp!  I was barely able to make it to my car so hubby could drive me home.  That third month, the first time I took Compazine, the sleep was not restful.  As I hit a REM cycle, horrible dreams and images woke me.  Not like a regular nightmare, where you sit upright in your bed breathing heavy, WIDE AWAKE, glad you’re awake.  I woke up only to realize it was a dream then off to sleep again.  The nausea was better.  The dizziness wasn’t quite as bad, but still not good.  I was able to move around my house without flying into walls.

The fourth month was even worse.  Not only was I unable to stay awake at all, still plagued by horrible dreams and nightmares, but I felt like my skin was crawling.  I laid in bed wishing I could take off my skin, just for a moment.  And the dizziness, yes still there.  Seems I went from the frying pan to the fire as they say.  Of course, this was only for the four days or so following the infusion.

The fix to this situation.  As it turns out the bladder med they give you during the infusion (once before the bag of Cytoxan and once after-see Cytoxan post) causes dizziness too!  In addition, the side-effects from Compazine was not normal.  So my docs and I decided to discontinue the bladder meds.  Although the official “literature” cites bladder cancer as a possible development with Cytoxan infusions, no one had ever actually developed it at this clinic.  And the docs at this clinic had twenty-five years of experience with Cytoxan.  Good enough for me.  Remember from above it is all about tolerating side-effects.  I took my chances (SPOILER ALERT:  I did not develop bladder cancer).

The nausea was a bit trickier.  Most of the nausea medicine when dealing with Cytoxan cause dizziness. Compazine was bascially in a class by itself.  My treatment became Decadron (steroids) and Ativan (anit-anxiety).  Ativan is used in the short-term for suppressing the central nervous system.  Which is what I needed for the few days following the Cytoxan infusion.  Decadron is used in the short-term to Decadron is also used in the short-term treatment of nausea caused by chemotherapy.  How it does this is not fully understood.

I certainly didn’t fully understand how they would work.  So the fifth month was nerve-racking until about four days later when I began to feel better.  Yes, I vomitted my brains out, spent days and nights praying to the proverbial porcelain god. but I felt better afterwards.  I felt better even when I was vomitting. And the best part: the vertigo stayed under control.  

From treatment five through ten I took Decadron (pill form) during the infusion and at home.  I also took Ativan at home.  My routine was this:  Get up at 5:30 am on the day of the infusion (a Friday).  Get son and hubby up at 6:00 am.  Have coffee – two cups.  Get son breakfast.  Get dressed.  Grab a coffee and breakfast to go.  Leave the house by 7:00 am.  Drop son off at school.  Hubby and I would drive the 1 1/2 hour to clinic.  Register.  Pick out chair in infusion center.  Pee in cup.  Get IV.  One bag fluid for about an hour (after bout 1/2 hour take six Decadrons).  Bag of Cytoxan for about an hour. Vomit. Another bag of fluid for about an hour. Vomit a few times.   Done in only three hours.  Take Ativan.  Walk back to car and drive (hubby drove) the 1 1/2 hour back home stopping a few times to vomit.  Be sick for about four days.  Then take two weeks to recover.  One week to feel better.  One week to prepare for it all over again.





June 30, 2008

My treatment plan called for twelve months of chemo (Cytoxan).  Then follow-up with CellCept.  All in hopes of slowing disease progression and even improving.  That was the plan.  Chemo is something for which you need to be mentally prepared. Especially when you are not fighting to stay alive. Especially when treatment calls for monthly IV infusions for twelve months.

My first treatment went better than I expected.  Of course, that was once my blood pressure and breathing returned to normal so I could begin the treatment.  The nurses asked if I was nervous.  I thought it was a no-brainer.  Yes, I was nervous! This was CHEMO after all.  But with hubby by my side I concentrated on my breathing until I was in the moment.  Then I was ready for the infusion.

The process is quite lengthy.  As usual, if you are a woman, a urine sample is necessary for a pregnancy test.  Doesn’t seem to matter if you’re past menopause, everyone gets a little pee cup. Then you get an IV, or a line put into a vein. The nurses were great.  After a few visits you relax a bit and learn that many, many, many people have problems with their veins, but these nurses find the right vein the first time.  Good stuff.  See, after awhile you too will be thankful for that kind of stuff-nurses who can put in an IV on the first try, no matter the state of your veins.  

This brings me to the first little gem that chemo has taught me: Be thankful for the little things. Enough little things and they add to a big thing.  Almost like if you take each moment as it comes-forget about past or future-you realize how wonderful, how precious it is.  String enough of those together and your entire day is a series of wonderful moments.

Anyway, back to my first visit.  I peed in a cup, I have an IV. Now it was time for liquids. First came a bag of Dextrose. Then bladder meds to be sure you don’t get bladder cancer.  Then Zofran or some type of nausea prevention meds. Then the premium or high test or Cytoxan.  All topped off with another bag of liquid-Dextrose.  Interrupted only for a bit more bladder protection meds.

By the time-usually 5 hours or more-the infusion is over you roll out of the clinic feeling more bloated than a dead Blue Whale.  You spend the next twelve to twenty-four hours fighting nausea and peeing. Then the next week trying to regain your strength and appetite.  But, and here is where the mentally tough part comes in-you must keep in mind that you will feel better in the end.  That this is a “have to” if you want to regain your life, start living your life again.

For me even though I had Zofran, I still was nauseous.  Not having any experience with chemo before I thought this was a good experience, all things considered.  Gem #2:  Reality is what you make of it. This experience was not only tolerable but I thought a pretty good one.  

I spent two weeks gaining my strength back.  It took two full weeks for me to regain my strength. Then my appetite kicked in and I was ravenous. I would lose six pounds then gain it back as quick as I lost it. Hurrying to get life back to normal only for the fourth week to dawn.

The fourth week was busy with getting everything in order so that the following two weeks would go smoothly for my hubby and son.  I was also busy drinking plenty of liquids and trying to slow my eating and keep it healthy.

All this just to spend another 5 hours in the infusion center and the circle continued. Gem #3:  The more things change the more they stay the same.  This is an old saying, but I found comfort in the consistency of this routine.  I kept my mind focused on all the things I would be able to do with my family once the year was over.  I kept in my routine of infusion, two weeks recovery, third week to enjoy, fourth week prepare for next round.