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.

the beginning

May 3, 2010

I thought I would revisit the beginning of this whole MS. I know I’ve written about it before but I often hear people discussing the problem of getting diagnosed with MS or finding a doc that will actually treat you as a patient and treat you with the respect a person deserves.  Not all of us MSers are lucky enough to be diagnosed with a simple MRi and lumbar puncture.

Along my journey I learned much about MS and how it is diagnosed.  Somewhere along the way a group of neurologists decided that all people with an arbitrary amount of lesions on their MRi and certain results on a Lumbar Puncture WILL be diagnosed with MS. All others are excluded unless of course (here it is) they have documented symptoms lasting more than a year, then they MAY carry an MS diagnosis. This is called the McDonald Criteria.  Yes, yes, I know I am oversimplifying it, but essentially that is the criteria.

Not surprisingly then, we have categories like Atypical Chronic Progressive MS.  Kinda like that Miscellaneous Category in which everything that  doesn’t fit anywhere else, end up.  For all of you Christmas Special followers, consider everyone outside of the McDonald Criteria as living on the Island of Misfits.  We are like the toys that are very useful and fun but not like the others.  If you are keen on Sesame Street than we are the fourth picture-the one that doesn’t belong.  Do you see the pattern, the connection, the exclusion?

The key to getting diagnosed is finding the right person who will listen.  Now this can be a doctor (if so, then most helpful) or a neighbor or a friend or a stranger standing in line at the grocery market.  The more you talk to people the quicker you will find a doctor who is really dedicated to helping people AND who WILL help you with your illness.  Whether you are trying to get diagnosed or trying to find help in feeling better or getting meds, etc.  I think you see where I am going.

While waiting for an MS appointment recently I overheard two people talking.  I don’t mean that eavesdropped as they were sitting next to me in a very tiny, cramped waiting room.  Ok, so I am justifying it.  Anyway, these two women came in together.  One was the patient the  other a friend.  The patient was from Alaska while the other from a little state on the east coast.  And we were sitting in the waiting room on the east coast of the USA.   The patient moved from Alaska to East Coast USA because she had trouble finding treatment, doctors and diagnosis. Her friend knew of the MS clinic nearby and suggested she fly in for a visit.  Well that turned into  diagnosis, treatment, and a permanent move.

When my day were most frustrating in the beginning, I found help in a friend.  When Dr. Frick, Dr. Frack, and Dr. Headupmybutt all turned their noses up at me, a friend pointed me in the right direction.

I learned not to give up but to persevere.  Oh, I wanted to give up.  But friends and family wouldn’t stop bugging me.  I had to keep going.  Now, if you don’t have people like that then find them.  Find at least one other person who will keep you going.  Some people have found help on forums, websites, blogs, etc.

There are a lot of Dr. Headupmybutts out there.  They are the problem, not you.  It is funny because when you have a child most pediatricians will say, “Well, a mother knows,” when you bring in your sick child.  Yet as an adult, when docs can’t find empirical(hard evidence on their tests) then they say “Well, a doctor knows,”.  Stick to knowing yourself.  If you know something is wrong, then keep trying on Doctors like you try on shoes.  You know what is best for you, you know when something is wrong.  You know?