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.




Finding Help

June 29, 2008

So many people have symptoms similar to Multiple Sclerosis but carry no diagnosis therefore, cannot obtain any medical help.  HOW CAN THIS BE!  First of all  there is no DEFINITIVE TEST for MS.  Let me repeat that.  THERE IS NO DEFINITIVE TEST FOR MS.

According to the Multiple Sclerosis International Federation “unlike many other diseases, there is no straightforward ‘positive or negative’ test for MS and none of the range of tests available to help doctors with their diagnosis is 100 percent conclusive on its own.”

If this is common knowledge then how can neurologists look a person in the eyes and say with certainty YOU DO HAVE MULTIPLE SCLEROSIS or because nothing shows on tests, I CANNOT TREAT YOU. NOTHING MORE I CAN DO.

There is a whole limbo land out there populated with patients people who are suffering.  I cannot say patients because it is easy for some docs to hide behind the object of patient.  Patients are not people, they are the commodity of the business of medicine.  If docs begin to refer to these patients as people then they become sisters, brothers, mothers, children who cannot be turned away.  People must be helped, patients are objects or things.  They are nothing more than the manilla folder containing forms filled out by people hoping this trip to the doc will be the one where real help is found.

If a doc can’t figure out what is wrong or a test to administer in the first few moments of an appointment then it must be the patients fault.  The patient must be mistaken, wrong, or my personal favorite “psychologically impaired”.  

While trying to get diagnosed, dare I say help for my ailment, a friend told me about empirical versus clinical evidence in diagnosing diseases.  Empirical evidence relies on test results.  Clinical evidence relies on observation of patient.  It seems to me that in many instances no empirical evidence may show in regards to an MS patient.  Especially, in Primary Progressive MS as it is currently thought that the axons are effected not the myelin.  So an MRI may not show any white spots or lesions because the damage is below the myelin.

I spent only a year and half trying to get some help, forget about a diagnosis.  I went from a vibrant healthy young woman in my 30’s to a couch bound weak spastic woman in my 30’s within a year.  First diagnosed with seizures even though my EEG show no signs of any seizure, because my first neurologist felt it was seizures.  Seems he was able to diagnose and treat me with seizures without any  evidence on medical tests. After six months he basically said there was nothing more he could do.  

Only I progressively worsened.  I changed my primary care because he told me “not to call him again. There was nothing he could do for me.”  Nice guy, huh.  He even won a best doc award in the area.  WOW! So, my new primary care sent me to another doc.  She seemed much better. Even told me it could take some time to diagnose me, but assured me she could help.

After a full boat of MRIs (brain, c-spine, thoracic spine, and lumbar) and a seven day EEG I followed up with her.  I had hope.  Even if she couldn’t diagnose me after all these tests, she was going to keep trying that is what she said in our very first meeting.  Well by my follow up things must have changed.  The clinic she worked for must have said something because she told me my MRIs were within normal range and I do not have seizures.  Beyond that there was nothing more she could do for me.  When I reminded her that during our first meeting she said it could take awhile but she could help me, she closed my manilla file and opened her office door.  She just stood there while I and my husband left.  

My pcp even sent me to one more neurologist.  This guy was something else.  He lacked any compassion, any understanding, any medical knowledge.  He spent about five minutes reviewing a years worth of testing and doctor notes.  Another five minutes examining me and three minutes letting me know nothing was wrong with me. My husband pleaded with him for help.  His best advice was to see a psychologist as I was suffering from “a disease without any origin”.

Yes, I stood up told my husband we were leaving.  I limped through his office door to the waiting room then back again to let him know that it didn’t matter what was printed on some paper degree hanging on his wall, he was NOT a doctor.  He said he gave us his best advice.  My husband told him if that was his best advice then he should find another profession.

Suffering happens.  Happens to everyone. It will happen to these doctors as well.  Although I suspect they are already suffering deeper than I.  I am surrounded by family and friends lifting me upon their backs in hopes to lighten my load tiny bit.  One cannot act like these docs have with a loving supportive circle of family and friends.  Really in the end it is the people in our lives and the relationships we make that count.

Yesterday, I went for my ITB Therapy screening test.  Or my test dose for the Baclofen pump. Currently, I am on 110 mg daily of Baclofen, which I’m sure adds to my fatigue issues. And lately, it isn’t enough to loosen my hips and torso.  The pain from the spasticity is bad enough that I am also on Vicoden.   

My test dose was administered in the recovery room of the day surgery unit at the hospital. I was ushered into a small private room, with the help of my hubby I changed into the surgical patient uniform- the johnny. My nurse inserted an IV, drew blood, checked my oxygen levels and blood pressure.  All good.

Finally Dr. Calm (of course not his real name), the neurosurgeon, entered. Reassuringly, he numbed my back then administered the Baclofen via the lumbar puncture.  Within a few minutes the procedure was complete.  As with all LP’s I was ordered to lay flat for an hour or so.

Here is the great part.  By the end of the hour I felt some effects.  My legs bent without pushing, without pain.  But the real test was in my hips and torso.  As one doc put it, I “lost my wiggle”.  My torso is so tight I cannot reach over my head. Again, my hubby helps my dress and undress.  He, my son and a trusty grabber all help me reach into cabinets, cupboards, and even pick things up off the floor.

When I was able to get up, I was able to get up.  I was able to get off the bed without help, without pain, without having to adjust myself just so.  I shot my husband a look but he was two steps ahead with a smile.  During the next few hours I took the short walk, long one if you have trouble walking like I do, to the bathroom. This was a beautiful moment.  For the first time in two years, I felt as if I was walking, really walking.  Not just dragging the two dead cement columns attached to my waist around.  My hips moved, my wiggle wiggled.  

Hubby escorted me to the bathroom, but returned to the recovery room.  Coming out of the bathroom without forearm cructches and walking, really walking, was a feat worthy of Olympic Gold. As I turned the corner I saw the face of my husband.  The face of the man I married.  Not the face of the man I have looked into for the past three years, the one distorted with stress, worry, and fear. But the happy smiling face of the man I married fifteen years ago.  

When I got back to the room I stretched like a bear waking from hibernation, a two year hibernation. It felt GREAT!  But the best part of the day was seeing the smiling face of my husband.  I don’t worry about the future because I know that he worries enough for the both of us.  I have learned that life is what you make of it.  No one is given a life without obstacles, we all suffer.  That is the great equalizer, that is what unites us.  Whenever I look into another’s eyes, I can’t help but see suffering like mine. In this way, I have learned to take what I have because all we ever have in now, this moment, and it IS precious. 

So, now I wait for a few weeks until Dr. Calm surgically implants a Baclofen pump, ITB Therapy, into my body.  

First Signs

June 15, 2008

In the spring of 2005 I noticed after long walks, hikes, and other athletic pursuits my legs felt heavy and awkward.  By awkward, I mean I was unable to move them in the way I wanted.  My brain kept saying “pick up the leg, bend the knee. C’mon you’ve been climbing stairs for 36 years now!”

But, legs heard silence.  In fact, for the rest of the day after anything rigorous my whole body would not recover.  Being only 37 years old, I figured maybe I took on too much lately, can’t bounce back like an 18 year old.  The previous few years I went back to college for my teaching degree, secondary school English.  

In addition to college, I hiked several times a week.  Having a Chocolate Lab, Pirate or Moose (he answers to both) required four to five days a week of walking 3 to 5 miles each day.  I also took him on some hikes. When my son and I went to scale rocks during our hikes, we left Pirate at home learning that he preferred scaling to descending rocks.

Oh, and my son was a very active, athletic young boy.  We played basketball, football, rode bikes, hiked, tennis, soccer, etc.  You know, the typical stuff of boys do.  We had a blast.  

So you see my life was busy, fun, fulfilling.  I felt like this was it; my life was finally where I wanted it to be. I worked for 36 years toward a certain life then, BOOM!  It changed.  And it all started with a disconnect between my legs and my brain.

When I became concerned, I spoke with my husband.  He confirmed that maybe I couldn’t just bounce back anymore.  After all I was going from 5AM until 11PM.  But, I was happy, felt great, in tune with life.  In the back of both our minds something kept screaming, “THIS ISN”T RIGHT!”

We kept going though.  Things have a way of working out.

Multiple Sclerosis is a chronic disease of the central nervous system comprising the brain, spinal cord, and optic nerves. There are generally considered four courses or categories of MS-relapsing remitting, secondary progressive, progressive relapsing, and primary progressive. The first three are in the larger relapsing remitting (RRMS) category, while the fourth one is stands alone (PPMS).   PPMS is the only course for which disease modifying therapies are unavailable.  

Although I look like all other PPMS patients I carry the Atypical MS diagnosis because I do not fit neatly into the diagnostic criteria set forth by a group of neurologists who govern these issues. This group of neurologists set forth the criteria because there is no definitive test for MS.  MRIs, lumbar punctures, and various means by which to eliminate other diseases are used when diagnosing MS, BUT these results do not give a guarantee, 100% surety that the disease you are experiencing is MS.  

So, what are the diagnostic criteria anyway?  Well, the current criteria is called the Revised McDonald Criteria which lists several different possibilities set out by the International Panel on the Diagnosis of Multiple Sclerosis.  Sort of like a board of directors deciding a financial plan for their corporation.  Anything decided by a committee usually looks like a Mr. Potato Head put together by a two year old.

As a result many people, I won’t refer to these people as patients because that objectifies them making them seem like a cardboard box, fall through the cracks.  Falling through the MS crack is akin to falling down the proverbial well.  Isolated, stuck, screaming for help without being heard and unable to scale the cold, slippery stone wall back into daylight.


I stated this blog because I am diagnosed with Atypical Multiple Sclerosis.  In 2006 after a year long battle consisting of many medical tests and several callous neurologists I finally found a compassionate doctor who was willing to work with me.  By the autumn of 2006 I was diagnosed, however, we keep looking for answers.

Having a progressive form of the disease is isolating.  Most of the information about MS speaks to Relapsing Remitting MS.  All of the disease modifying meds are approved for RRMS.  The idea is that 85% of patients have RRMS so therefore most of the money, research, time, energy has been in that area.  The latest numbers show about 450,000 people in the US suffer from MS.  That would be about 382,500 RRMS patients.

But 67,500 people suffer from PPMS.  We are told that because we are only 15%, we should not matter.  How many different meds do RRMS patients need?