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Entries in IVIG (2)

Friday
Sep252009

And the Winner Is...

ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I write this with a humble heart filled with gratitude and a sincere appreciation for life.  I saw the oncologist yesterday.  I am again manufacturing white blood cells.  My levels are not yet normal, but they are climbing.  I feel better.  The sweats and the headaches have stopped although I am still somewhat fatigued.

This is the theory as to what happened.  I take the IVIG infusions to supress my immune system.  Some people take IVIG to boost their immune system because it is weakened.  To quote my doctor, "You have the Rotweiller of immune systems.  It is constantly on guard and wants to attack invaders.  It is termed a hypervigilant immune system.  If there are no invaders, it will attack whatever it can, in your case, the myelin sheath lining your nerves."  When I get the IVIG antibodies, it is to flood my system and wipe out those Rotweiller antibodies (anti-antibodies) that I make.  Conceptually it's like chemo treatment for cancer that has to wipe out everything to wipe out the cancer cells and then rebuild.  Fortunately, I am healthy and knocking out the white blood cells destroyed them, but I am capable (we now know) of manufacturing more.  I just have a critical period where I haven't made enough white blood cells yet and it can be very dangerous.  But we're aware of it now and can take precautions.

The only real question now is whether the IVIG does me enough good to make it worth taking the risk.  I decided not to think about that one today.  I mean, if Scarlett O'Hara can think about it tomorrow, why the heck can't I?  Instead, I made a Zuni Cafe Roasted Chicken.  It's really really easy and is very chicken-dependent.  I promise I'll write it up soon.  And furthermore, I will deny I ever said this BUT...it's better than a COSTCO rotisserie chicken in that unlike the COSTCO the Zuni chicken skin is crisp crisp crisp while the meat is tender tender tender.  And No, Dr. Federman I did not eat any of that crispy, scrumptious, tingle your every tastebud chicken skin.  I know my cholesterol is way high and that why you give me Prevastatin.  I was just ummmm you know, saying it about the skin....

Thanks especially to all of you for being so very kind to me and so very supportive.  I truly am humbled by you.  Now, I am going to take a nap and will try my hand at a corn pudding later.

 

PS: If I owe you an email::::waving at Holly and Jill:::I promise I will get to it soon.

Monday
Sep142009

Round and Round She Goes

I finished my five days of infusions Saturday around 3 PM.  That's it!  Twenty thousand dollars of anitbodies suspended in plasma shot into old Dana's friable (?) veins.   I've taken this stuff before.  I quit it.  My veins were bad and I got mad and quit.  I've never had adverse physical effects before (aside from the veins).  This time was bad, headaches, nausea, diarrhea.  I finally think I know why.  Before I got the infusions at a doctor's office where they had an infusion lab.  It would take about six hours to infuse the stuff.  This time, I had them at home.  Nurses from a home health care came.  They came from Miami, 60 miles south and then had another patient back south to end their day.  Time is money.  I think they did way too many drops per minute for me.  I know they did.  I'm sure it's why I had such reactions.  They (2 of them, one for 4 days, another for the last day) were wonderful women,  I just paid the price for bottom line costs.

As soon as all the IV tubing was removed and the nurse cleaned up and left. I took a shower.  The original nurse started off thinking she could leave the same needle in my arm for the entire five days.  It didn't work that way.  The most I got was two days in a row and then switch arms for a total of three insertions.  That doesn't sound like a big deal if you've got good veins, but believe me, for me every reinsertion is a very big deal.  So, I really only had two showers in five days because I was afraid of moving the needle in the vein.  My shower on Saturday with no needle, no tubing was heavenly.  It really is the little things in life that count.

I hadn't left the house for five days so I went out.  Where would you go if you were just sprung from jail?  I went to my very favorite place.........Publix!  I thought to myself, "How pathetic is this?  You think of Publix as some place to go to celebrate."  I do not know why I did this, but I got a visual image from my childhood....Do you remember pony rides?  Where those poor wretched ponies are saddled up and their halters chained to this revolving spoke thing and kids sit on their back as they hang their little heads and just plod along with dull eyes, one little hoof in front of another all day long while smiling parents wave to happy children.  It seems inhumane now seen through my adult eyes.  I loved it as a child.

  I was like one of those ponies, dull eyed and knowing only to do what it is I always do  I got my grocery cart and just plodded up and down the aisles of Publix.  I couldn't think of one thing more interesting to do.  We have a huge Publix and I went up and down every single isle, just looking, looking looking.  Finally, I decide to pick up the ingredients to make a European-style lasagna using ultra thin sheets of wonton wrapper pasta dough.  It is definately fantastic and contains no Ricotta cheese, but rather a Bechamel sauce.  I made the lasagna yesterday and it is the best I've ever made...definately European....layer after paper thin layer of sheets of fresh pasta  I will try to write it up tomorrow if I have the energy.  Here's a teaser....Yes, I cooked for my husband.

Before I left the store, I kicked over my traces, or bucked off my saddle or whatever metaphor fits and doubled back to the cookie aisle.  I'd already slowly ambled down it, but that little voice in my head said "Just keep on going....danger! danger! danger!  fattening!!"  This time I grabbed a present for myself and thought, "Love Thyself" and..... I did....