Atypical Multiple Sclerosis

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.