17. Settling In

I did it.  I got my first Tysabri infusion.  I might have well been getting a leathal injection, for I already feel the white matter in my brain turning to mush.  I feel memory loss and muscle cramping and weakness ...  OK, maybe it is just psychological.  Maybe I am OK and this drug is the best choice, but I am still hesitant. The process went well.   The infusion took an hour and then they monitored me for an hour.  Hopefully this will put and new symptoms at bay and let me recover from the old stuff.
I still have both Physical Therapy and Occupational Therapy twice a week.  I work on my balance, making my muscles stronger and basic walking with my Physical Therapist.  With my Occupational Therapist, I work on keeping symmetry of my facial muscles, eye tracking and hand coordination.  Things that used to come easy are now quite a challenge.  The OT put out a pattern of pennies for me to flip over , and timed me doing it.  It almost brought me to a sweat.  Hopefully these things will get easier.  My two biggest challenges right now are my balance(or lack there of) and the numbness in my face.  Im hoping that since the facial thing is just nerves, that they will repair.  Though, it has been a month already since I lost feeling.  I wonder.  I still get pins and needles in my hands and feet but that doesn't entirely bother me.  I can live with it.  I did finally just wean off the steroids the day before yesterday(after approx 5 rounds in 2 months).  So, hopefully I will notice some good changes there.
Meanwhile, I have been trying to make my life easier and more comfortable at home.  I buckled down and got a patio set so I can sit in the shade comfortably outside and watch the kids, working on putting in a doggie ramp from the deck so I can let the dog out myself.(its one thing needing so much help, but to have to page someone because the dog needs to go out is just a little much)....and, of course, our dog is a runner so you cant just let her out the front door and expect her to come back.  She will run and run until she finds something dead to roll in, then go to the nearest house to call for a ride home.  Lovely, I know.

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We,  as a family, are adjusting to cooking our own meals.  Our friends, church and community are so gracious that we haven't had to prep and cook a meal in almost 2 months.  Its a rough transition though.  Now, at 5pm we are all looking at each other wondering what we are going to eat.  I have to get my butt in gear and do some meal planning.

My days, though I don't leave home, with the exception of doctors appointments, fly by.  I help a bit watching the kids, a bit in the kitchen, care for my flowers and 'garden', PT, OT, watch my beautiful new fish and, most importantly rest.  I have been tolerating more visiting.  So, if you are so inclined, give a call and stop by for a visit.

 

16. Down the Hatch

So, in order to write this blog I must eat my words and those of you that know me well know how difficult that is. Here it goes:
I saw my MS Specialist last week.  The visit, in my opinion was not positive.  She evaluated my progress, asked me questions, blah, blah, blah...Then asked me if I considered her recommendation for treatment. I told her, as best I could, my feelings on the risk of Tysabri.  She looked at me and told me how many people she sees with MS and to all different degrees, but I am just unlucky.  Unlucky as to where it has  hit me and to what extent.   Wait a second, Im never unlucky.  This was just supposed to hit me mildly, resolve completely and leave me to go on to be the Poster Child of MS.  I was supposed to be able to treat this all naturally, run marathons and return to supermom status asap.  She used the words 'worried' and 'scared' and 'quality of life'....things you don't ever imagine hearing from your doctor.  She assessed my vision and is also worried that I will not regain sight in my right eye.  She excused herself to consult with another colleague and when she came back she let me know they both would support my decision to not use Tysabri, but disagree.  Her last attempt at changing my mind was another MRI.  With those results in hand, we could re-discuss tomorrow.

  The next day I had another MRI done, this time just of my brain.  The results showed no new lesions(for the first time in 3 or 4 MRIs).  Though, some of the old lesions were still active.  I think now I have the 6 or so on my brain, 1 on my Cerebellum, 1 on T3 and 'the big one' on the base of my brain.  As the doctor put it, she is more worried about the extent of disability from future attacks than she is about the risk factors of Tysabri.  So, yes, I will eat my words, put my life in her hands and try the drug.  Seems as though all this 'coming up smelling like roses' has run its course.... (Those of you keeping up, that's two down the hatch, Tysabri and Im in fact NOT lucky)

 So, We made the best of the day and spent what I had available on my new flowers and veggies.  I love them, cant get enough, filled a cart and a flat bed with all kinds of gardening goodies.  I perched myself on the back of the shopping cart and walked until I couldn't walk anymore(really only a matter of a half hour, but I did it).  The next day, with the help of friends and family we began transforming my back deck into my oasis.  I figure if that's as far as I can get this summer, I want it to be beautiful.  Besides, gardening is great therapy!

Next comes the outdoor furniture venture!  I cant wait, got to give myself something to look forward to.  Interspaced with all these (as a friend calls them) play projects  Im making the doctors calls and appointments and trying to push through this Tysabri.  Ends up its highly regulated and even more highly priced.  So, the paperwork and authorizations are quite an undertaking.  My greatest hope is that I don't get a new lesion before I can get on this medicine.  Its looking like it will take a week or two to get everything in order.  It is administered by IV infusion at a few certified clinics around the state.   I guess, once infused, it begins working immediately to prevent future attacks(80% effective).  Im  just hoping it doesn't hit the other eye, or worse, before then.  Because I really am doing better.  I can walk around(a little tipsy).  Im working with my PT to try and be able to walk like a normal human and not like a zombie. This loss of vision thing wouldn't actually be so bad if I could regain normal sensation in the right side of my tongue ,face and head.  It wouldn't feel like I have just half a head. I have sensation back in my hands and my arms are getting stronger.  I actually was able to make dinner last night for the family.  What a treat since my passion is, besides my children, being in the kitchen.  I made fresh ricotta cheese the day before and saved the whey.  So, I marinated some chicken in the residual whey, also cooked the wheat pasta in it.  Then I just added some fresh kale, tomatoes, garlic and white wine and mixed with the pasta.  Delicious.  Felt SO good to make my own dinner after weeks of prepared(yet really good) food.
  I also am able to dress my kids, do their hair, put them to sleep at night and keep an eye on them while they are playing quietly here at home.  Baths, feeding anything to do with running after them are still things to conquer.  If all else fails, wheelchair rides on my lap around the house seem to settle them. My oldest loves this new mom, for the most part.  She loves me home and to have me actually still do be able to do my nails and watch movies and such.  She is a huge help with the kids and around the house too.  I feel its finally the boost she needs to teach her responsibility and concern for others.  Maybe not quite the way I thought she would learn...  But that's life, not quite what you expect!!

15. Tysabryi on the brain

  Well, the doctors told me not to expect any improvement for my first week home, just ups and downs.  My body is acclimating to being home rather than in a hospital bed 24/7, I'm on a step down program of oral steroids after all that IV stuff, and on way less meds.  Seeing all that, things have been fairly steady.  I have my good and bad days as far as walking.  Sometimes weaker than others and sometimes more off balance than others.  and I never know when it will be.  So, I have gotten accustom to getting around the house in the wheelchair mostly.  Besides, I think it makes everyone feel more comfortable... and my 1 1/2yr old loves travelling around with me.

  I, of course, have wanted to take on the world, especially when Im laying down.  Ive had 2 weeks of HGTV and cooking magazines under my skin in the hospital. So, Im super motivated...until I sit up!!! I have amazing plans of planting garden boxes right out on my deck where I can get to them easily to water and enjoy. Tomatoes and peppers and cucumbers galore.  Ive already got my pressure cooker and canning jars ready!  Also have a line up of garden pots and plants on my wish list to transform my view of the deck into a living wonderland of sprays and blooms. So far, I managed to start 2 small pots of strawberries before I crawled back to the couch.

  My days inside will soon be lightened by our own aquarium,, which a friend generously offered to donate and set up..  We cant wait.  It was one of our fondest and fun memories at the hospital.

 

When we moved into our new house, we opted to ditch the TV, which has been great- haven't missed it.  But, when stranded on the couch for hours on end, distraction of fish will be nice.

 

I have spent a lot of time this week setting up my new web site (www.mybeautifullifewithms.com).  Im hoping it will eventually host my blog and also serve as a resource for all those affected by MS, children to adults.  My hope is when I fine tune the site, I can eventually make an income off it.

 

My next appointment is Wednesday, first thing in the am, with my MS Specialist.  The goal is to start on an MS modifying agent...you have heard me speak about this before if you read my blog, but now its countdown time.  The drug of choice, that the doctor recommends highly, is Tysabri.  Its a great drug, so all the doctors say, and it will give me the most chance at regaining a totally normal lifestyle.  They say it might even halt MS in its tracks and be 80% effective at preventing other attacks.  It is given by a once a month IV Infusion at a center especially trained and licensed.  Sounds great......except if it only didn't come with the "black box" warning label that theres a rare chance it will increase the risk of PML.  Whats PML? Great question. It stands for Progressive multifocal leukoencephalopathy, a rare brain infection that USUALLY causes death, but otherwise renders you a vegetable.  This drug came onto the market, I believe, in 2006 and was pulled off after 347 confirmed cases of PML.  What they finally found, though, is a link to PML and the JC Virus.  If you don't have the JCV, you cannot(so they say) get PML.  So, whats the JC Virus? Another great question.... Nope, it not some rare virus you may possibly contract from a 5 toed ant on the slopes of the Western Nile.  It is a strain of the common cold.  We have 3 kids and a household of 7, we not only have every, we probably create new strains of the common cold.   The JC Virus is so common, it effects 70-90% of the general population. So, just because I haven't been exposed to JCV yet, doesn't mean I wont.  What a decision.  Ya know, looking back, how many sleepless nights I spent dwelling on what I thought were BIG decisions... Like who to date, or if to send my kid to camp,, or if to buy that new car.  The next time you have to make what you think is a huge decision, think about this one: The chance at living a normal life or your brain possibly turning to mush(with NO cure BTW).  I think maybe if I was older, or didn't have kids, or...or...   The doctor keeps telling me what a small risk this is and how its such a front line drug..... I still have two nights to lose sleep over it I guess. and I better start now,   its getting late.. 

 

14. Just a quick update

Its saturday. My first weekend home in what feels like forever. Its a beautiful day already out there. The sun is up, birds are chirping, The Farmers market will be gearing up, as will the stampede. I will be here on my couch.
I suppose I have made progress this week. At least everyone else feels i have. I can get to the bathroom on my own. And I can also get my own drinks. So, I guess that's a good step. Its just not good enough for me.
Yesterday, I actually took my first bath in like a month, without a shower chair or without being assisted. I thought it would be wonderful. The water just didn't feel right on my skin. Its like I had a bath fizzy in the tub.. but I didn't. I thought shaving my legs would go great and I wouldnt look like a mangy Fox that just ran through a pricker bush, but my hands just werent steady enough. I thought I'd be able to style my hair by holding the hairdryer in one hand and a brush in the other. But that didn't go so well either. I thought when I looked in the mirror I would havd less grey hair than I actually did.
I sat at the dinner table with everyone and put on a smile and I think they actually thought I was part of the group. But I didn't feel like it. I could barely keep conversation. I had to concentrate on chewing very slowly to make sure I swallow it correctly. I could only see everything to my left,And I was nervous and hot tbe whole time.
I would like this blog post to be more inspirational and up beat....
Tomorrow is another day...

13. Homebound Again??

 I have mixed emotions about my departure. I believe I originally checked into Newport Hospital on April 14th. Since that i have kind of been hospital hopping. It has been a long time and I have missed a lot. I have missed being able to wean my last baby at leisure and watch her thrive, I have missed some major potty training accomplishments with my son. I missed my daughter's spelling bee and school carnival. Missed most of the apple blossoms blooming on the tree in the back yard and the Lilly's in the front. I missed opening day at the pool and the memorial day parade. I even missed being voted in as PTO president (but they graciously held my spot :).
    I've missed a lot, but this is my SAFE spot, my spot of healing. The staff are so nice here. Mainly because they have to be, but also because they love their jobs. Even if they have to wake me at 4am for blood draws or vital signs its with a please and a thank you and "can I get you anything"? Theres also the comfort of the "team" checking in on me daily to monitor my progress and answer any new questions. Then theres the dreaded ultra happy physical therapy team I hear seeking me out,, with their super high energy and big smiles coming to make me work. Funny, years ago I would run my cross country and stadium courses a half dozen times before I actually rode them, just to make sure I got the pattern down. Now my one token walk around the nurse's stand with a physical therapist by my side to keep me from listing right and Al following with the wheel chair in case I need a break warrants a big "Whoo Hoo", but it still feels good. There are my 3 happy places im allowed to go. One is to the fishtank at the end of the hall. It has a super creepy eel, a fish with THE whitest mouth you have ever seen and other beautiful soothing tropical fish. Im also allowed out to the healing garden. Its also a short walk and one floor down. Outside, ln the 7th floor roooftop of the cancer center, they put ina healing garden. It has flowering shrubs and trees, pathways, benches, architectual elements, a babbling brook and even a reflection pool area. Our last fun space to visit, which im not sure im supposed to even go that far but no one has stopped us, is the lookout over the lifestar pad from the 15th floor. We actually have the perfecct room on the 8th whereas we can see them come in and land right on our roof (im sure by now you've seen at least one of our fb posts).
   I think the thing I will miss most, that im actually bringing home with me but have to set free once home, is my husband. He has put his life 100% on hold to make sure I can hold on to whats left of mine. He has been here the whole time, not even making one trip home. He sleeps on a cot next to my bed. If I have a lazy day, he just hangs in and sits with me contently for hours. He leaves my side for minutes at a time, usually to get me 'must haves' like a journal, and the perfect pen to inspire me to write, and the not-to-light not-too-dark colour of nail polish, or the pizza and salad at 9pm after all the cafeterias close. He did great on all of those, btw. He also walks me to the bathroom all hours of the night, showers me, dresses me, feeds me (making sure all the food I can't feel on the right side of my face is cleaned up). He sits through all my procedures, even somehow being let into the MRI scan room to rub my toes and keep my restless legs at bay during the whole multi hour scan. I honestly dont know another person in the world that would, or should give up so much for someone else. So, when anyone asks where all my strength comes from, im probably falsely answering. My hope is to get home and progressively better so he doesnt have to watch me slide down this sink whole repeatedly.
      Im trying not to get my hopes up too high. We still have to hope for normal white cell counts and normal fibrinogen levels, and the lab schedule, and smooth recovery from my last Plasma Transfer. So, still a lot pending before I can get discharged and a long sleepness night ahead of me. A good night for all my meds, pull the clock from the wall and put the phone under the bed .
   And.......prayers!

12. And Another

Wow, for laying here in a hospital bed unable to walk or move around much , the days really fly by. There are vital signs and nurses checks and medications and Specialist visits and room cleaning and physical therapy and treatments as such. It seems sometimes we barely get left alone for 15 minutes.
So, I have a lot to catch up on since my last blog. As far as the eyes, I have not gotten my vision back in my right eye. But the structure of the eye itself looks fine. The latest MRI showed a lesion on the back of my optic nerve which is what's causing the problem. The neurologist sees no permanent damage in my future. So, its just a waiting game. And like I mentioned. .. Still happy to have that one eye with vision. One of those amazing things I ponder as my eyes are pushing those clock dials around at night..... how god was smart enough to make two of , most needed organs(for lack of better words).
The rest of my MRI came back clean, meaning no new lesions. So what I'm dealing with is just remnants of "old" lesions. It means dizziness lack of coordination, headaches, numbness but other than that nothing new. Lol.
The doctors decided to extend out my IV Solumedrol, steroids. So I still have them every 24 hours. I will deal with the results of coming off that later. That's where all of you come into play... to deal with me. I still have my plasma transfer treatments every other day. Although, I had a setback this week. My fibrinogen http://en.m.wikipedia.org/wiki/Fibrinogen  level dropped below normal which can affect blood clotting so we had to wait a day for it to recover to a safe level before plasma transfer. That added three days to our stay, since they dont run that procedure here on the weekends and besides, gives my poor veins a chance to recover.
I got a great treat on Friday when my daughter was pulled from school by our pastor to come and pay me a visit. My little ones also came up today which boosted my spirits immensely. This weekend we took me off the IV fluids to see how I do on my own. It will be the final test you before going home.
We also had another difficult decision to make. The doctors decided they wanted to start me on an MS modification drug sooner rather than later. The drug that shows most potential of haulting my symptoms and its tracks is a very aggressive one on the market but very controversial as well. Its called Tysabri  http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/natalizumab/index.aspx and can only be given through in the fusion center associated with Yale or medical clinic around the area. It sounded good at first in that I would be able to maintain a normal lifestyle, yet also comes with the increased chance of a rare form of brain leukemia, which is irreversible. Also, the duration I would be able to be on the drug is 2 years. So for that kind of side effects for a two-year drug it just doesn't seem worth it. I made the decision in the middle of the night last night not to take that road. So we are looking into other options. There is a drug used over in Europe by the name of BG 12 that has been used for over 10 years for different applications but its coming to light with the help of treatments for MS.
Other good news, for anyone but my floormates here, is I got a guitar to borrow.  Life-long dream of mine.. To sing and play the guitar.  Well, I can't do either to save my life, but looking back, my kids will remember how extremely talented I was :)

10. The Fifth Element

A pack of 6 dogs to go to the grocery store for a gallon of milk... grrr..

So I buy a big fancy tablet to have voice prediction so that I can speak so into my computer without using my somewhat paralyzed hands. Then, of course, my tongue itself becomes paralyzed and the sentences come out sounding more like the first.

Thank goodness for my wonderful husband. By now you know how wonderful he is from what i say. He does not read my blog. I don't know why, I have had asked him. Maybe he will someday when the kids ask him to or when we are on a beach somewhere when my book pays for our trip but for now just him typing for me makes everything ok in my world. We have been through a lot in the past week through many hospitals and many ambulance rides, it's landed us at Yale New Haven Hospital. I feel like we have checked into The Fifth Element, you know, that 1997 Bruce Willis movie with an orb of higher intelligence. Its really amazing.

I can tell you that COW here has a totally differnt meaning a COW back in Goshen. I'm use to a cow being well, a cow. But here, its a computer on wheels and every nurse has one. You just ring their personal phone number ad they zip up on their COW to help you with any need. The food service is more like room service as you can order anytime you want anything that you want. Its like a 5 star hotel. As far as the dctors go, I no longer have a doctor, I have a team. They transcend down around my bed like a basketball team going over the next  strategy,  all in their white lab coats. I know some of them are students and lab coats are just to maintain continuity of the team however they each have their own name on them, so they must have done something to get them. Never mind, they take extraordinary care of me.

I am currently undergoing a process called plasmapheresis http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/medications/plasmapheresis-plasma-exchange/index.aspx which they take some of your blood out, filter some of it out, put something in add it back and your blood to make new antibodies. Its a crazy scientific process. But its supposed to make me feel much better sooner.  I have only had two out of five and I can already sit up for first time in a week and walk short distances with assistance. I could also sit up without losing my sense of balance and don't have a screaming headache. Which is a welcome treat.

I still have not seen my family on my children in sis which they take some of your blood out, filter some of it out, put something in add it back and your blood to make new antibodies. As a crazy scientific process. But its supposed to make me feel much better sooner.  I have only had to get to 5 at can I already set up for first time in a week and walk short distances with assistance. I could also set up without losing my sense of balance and don't have a screaming headache. Which is a welcome treat.I still have not seen my family on my children in a week or more but I know my recovery will be much faster with that. I told them I'm not coming home until I can take care of them.  I have to leave that to family and community now.  right now it's just a point of waiting for my next few treatments scheduled on Monday, Wednesday, and Friday. They tried to give my veins a few days in advance to bounce back. Right now i am like a bruised pincushion , my face is half paralyzed , and I can sit up for short periods of time.

11. One Thing After Another

One thing leads to another..

So, my weekly adventure at Yale started on Sunday afternoon this week.  I woke up to no vision in my right eye. This didn't worry me as much as one would have thought because i hear its quite common with MS.  Besides, with my migraine a week ago I lost all sensation along the right side of my head, from the middle of my head, across my face, down half my tongue and my  neck. So, I kind of for saw something coming.  Within a few hours 'my team' had an optometrist bedside to do a full eye exam. Yes, that is why are are here, no fooling around. On a Sunday day morning none the less.
   Fortunately he saw nothing wrong with my eye itself but maybe in the myelin or some swelling in the optic nerve. I was just happy to have another one at that point.  He did say I would have to go to the clinic tomorrow for a full exam.  Now, the clinic is in t
he same hospital, but seems on the other end of the earth and due to my dizziness Anderson lack of balance it would be my first ride in a wheelchair, not a stretchr.  So, way out of my comfort zone.
Within  a matter of hours, my third MRI was scheduled (2 MRIs  and 1 CAT SCAN).  This was to be the most tedious of all.  It was ordered for brain, eyes and complete spinal cord, with contrasts.  That translates to 2 1/2 hours of laying completely still.  If you know me at all... still is not one of my strong points.
  It is about now I begin to wonder how mu h one human is meant to bear. Because just when I think im at my max, I keep trudging.  I also have to strongly interject here that this is when I get  little note saying your thinking of me, or flowers, or you spend time with my precious children when I cant, that keeps me going.
    There were times when both my parents had bouts of serious illness that , if I knew how much it would have meant to them to slow down my life a little and show them some more support...well I regret not, but im a different person now.
So, back to my events.. since the vision loss popped up,, they thought I needed yet another round of IV Solumedrol (steroids) which brings on blood sugar finger pricks and possible insulin.  Now im up to about 6 blood sticks a day.. for about the past month.  Thats heparin shots,  finger pricks, labs,  catheter changes and the big one, the pheresis dagger.
  Speaking of which, I still had that treatment to go, which I dont like at all.  It is just completely unnatural.   I do believe I am beginning to accept it as a necessary evil.
That was my Sunday/Monday.


Destiny is found in two days
One that seems for you
And one that seems against you
So when things seem easy
Dont be proud or careless
And when things are difficult
Be patient!

        Hadat 'Ali