Day 80

Hemoglobin 10.3
Platelets 61
WBC 3.0
|Neutrophils| 1.8
Creatinine 1.28

Not much to report from the doctor today. My counts have stayed approximately the same from Tuesday.  I lost 3kg (about 6.5#), so the increased diuretic seems to be doing something.  The neuropathy hasn't changed, but I wasn't expecting it to.  I just have to tough it out until the Gabapentin begins to take effect.

I don't think there will be any changes to my immunosuppression until Dr. Oran returns - that is unless my GVHD begins to flare.  The doctor I saw today had no intention of doing something so bold without a damn good reason which I guess is ok with me.  I just miss Dr. Oran already.

Since I don't have much else to say I thought it'd be fun to give you an idea of what my daily medication regiment looks like.

That's everything I take, sitting on the corner of my desk.  Most are drugs, the larger bottles in back are vitamins, and the big tubs on the right are creams.

That's my weekly pill box.  You can see how big it is with my hand in there.  Those little boxes fill up fast, though.

These are the scheduled medications I take, the dose, the frequency, and the function.:

• Furosemide 60mg 2x daily - my diuretic
• Cozaar 50mg 1x daily - anti-hypertension
• Metoprolol Succinate ER 50mg 1x daily - anti-hypertension
• Ursodiol 300mg 3x daily - protects my liver
• Gabapentin 300mg 3x daily - anti-neuropathy agent
• Acyclovir 800mg 4x daily - anti-viral
• VFEND 300mg 2x daily - anti-fungal
• Prednisone 80mg 1x daily - immune suppression
• Rapamune 0.4mg liquid suspension 1x daily - immune suppression
• Azithromycin 250mg 1x daily - anti-bacterial
• Dronabinol 2.5mg 3x daily - appetite stimulant
• Calcitrol 0.25mcg 1x weekly - vitamin made by the kidneys
• Triamcinolone Acetonide Cream 0.1% applied 3x daily - steroid, fights dermal GVH symptoms
• Hydrocortisone Cream 1% applied 3x daily - steroid, fights dermal GVH symptoms, used only on my face and hands
• Lorazepam 1mg 1x daily - sleep aid taken at bedtime
• Zolpidem Tartrate 5mg 1x daily - sleep aid taken at bedtime
• Men's Multivitamin 1x daily
• Calcium 600mg with 250 IU Vitamin D 3x daily
• Organic Flax Seed Oil 1g 3x daily

I also have some prescription pain killers but I don't take them very often, so they're not included.  That's thirteen different drug capsules/pills, three vitamins, two creams, and one liquid suspension.  For those of you keeping track at home, it's a total of 37 pieces (plus the liquid suspension) going down the hatch every 24 hours (38 pieces on Sundays because of the Calcitrol).  It's a greater number than if you were to add up the list above because my prescribed amounts sometimes require multiple pills.  For example, my Prednisone comes in 10mg, 20mg, and 50mg sizes, so to reach a dose of 80mg I take one of each size, once a day.

And yes, I can recite the entire list from memory.

Day 79

I saw Dr. Oran yesterday.  She is concerned because my GVH has still not completely resolved.  She said once you start treating GVHD, symptoms should completely disappear.  Even after almost a month of treatment, however, I am still peeling and red on my hands, face, and feet.  Although the symptoms seem to be minor, the fact that they're still present indicates to Dr. O that further suppression may indeed be necessary.  She's hesitant to do so because the symptoms are so stable and don't cause me any discomfort.  She says we can't just let it persist indefinitely, but she decided to wait some more before taking the next step.  We're soon approaching the tipping point, however.

My biggest concern is the edema I still have in my legs.  The swelling has also caused neuropathy in my feet.  Basically it's sharp, shooting pain every time I put weight on either of my feet, and a dull ache while I'm sitting without weight on them.  The pain has been so bad the past few days I've had trouble walking.  Dr. Oran still thinks this is all caused by the GVH and complications from my medications.  She prescribed something to help with the neuropathy, unfortunately it takes about a week to build up in my system before I'll notice a difference (assuming it will make a difference).  Standard painkillers (acetaminophen, ibuprofen, narcotics, etc) don't relieve pain caused by neuropathy, so I have little relief, short of staying off my feet.

In addition to the neuropathy medication Dr. Oran increased my diuretic from 80 mg/day to a total of 120 mg/day.  My next appointment is tomorrow.  Dr. O is going to be gone for the next three weeks (d'oh), so I'll be seeing a different doctor during that time.  I just hope it's not a different doc each time.

Thank You!

Thank you to everyone who was at the benefit today and there with me in spirit.  I am incredibly fortunate to be loved by so many people and would not be as healthy as I am today if not for your support.

Thank you, from the bottom of my heart.

Love,

Nic