Day 86

Two weeks until Day 100...  A significant milestone I guess, but primarily I'm excited because I think they'll remove my central line.  I want to be able to shower like a normal person (you don't want to know how long it's been since I've washed my hair, albeit there isn't much to wash).

Last night and tonight I've had terrible insomnia, even after taking my Ambien and Ativan.  I was up until 0600 or 0700 this morning, and now it's 0154 and I'm still wide awake.

I saw a PA today in clinic.  My counts are up a little, something like:

Hemoglobin 11.1
Platelets 77
WBC 3.7
|Neutrophils| 1.8
Creatinine 1.38

My mass is down to 83kg (~180#).  It's definitely noticeable in my legs, they don't look very sausage-y anymore except around my ankles and feet, exactly where the neuropathy pain is.  I haven't been wearing my compression stockings much and even at night I don't seem to be retaining much water in the upper parts of my legs or body.  I'm still on the diuretic, so I just need to keep hydrated as the last of the extra fluid comes off.

My neuropathy pain is still constant and severe.  I've found that one of the painkillers I have left over from my lung surgery (I pop two 500mg acetaminophen/5mg Vicodin hybrids) will take the edge off the pain and make walking easier for about 4-5 hours.  I talked it over with the PA today and she was fine with me taking it.  She also doubled my dose of Gabapentin and prescribed a Gabapentin gel to rub into my feet.  I hope it brings some more thorough relief.  Even with the partially effective painkiller my feet are still miserable.  It wears off so fast and doesn't help me at times like when I sleep.  If I have to get up during the night to use the bathroom, for example, walking is so impossibly painful I crawl to to the toilet and back on my hands and knees.  Trying to walk brings such excruciating pain my legs will give out and I usually fall to the floor, which is how I got the brilliant idea to crawl in the first place.  Strokes of genius come in such strange packages sometimes...

On the plus side (I guess) I took a pair of crutches from my parents' house while I was home this weekend, so if I have to go mobile for an extended period of time it is a little easier.  I should say faster, not easier.  I can shuffle much more quickly on the crutches than if I just walk freestyle.  I also received a handicapped parking tag for my car (woo close parking!).  I refuse to let this pain keep me from living my normal routine (ie grocery shopping).  I'm glad I have at least a few options - painkillers, crutches, disabled parking - that make it possible, even if still painful, to do what I need to do to stay independent.

Plus now, with a disabled tag, I can park at meters and don't have to put in quarters!

My next appointment is Friday.  The PA was concerned that my creatinine was up a little (I think it's the diuretic's fault, since there's such little excess fluid left.  That's why I need to watch my hydration and keep my kidneys happy).  My blood pressure has also been elevated since I stopped the amlodipine.  If it is still up on Friday they plan to add another anti-hypertensive.  I thought she should have done it today, but the PA insisted we wait.  So I guess we will wait.

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

Day 71

Dr. Oran is pleased with the progress my GVH has made in the past week and doesn't believe further immune suppression is necessary now.  Although the skin on my hands, feet, and face is still dry and peeling, my color "has improved" and the rest of my body looks clear.

The report on my ECHO won't be completed and reviewed by Dr. Oran until later this week, so I'll get a call.  I weighed 90.0kg today, which is one kilo less than yesterday.  She said the prednisone and GVH could be causing to the edema.  Since the GVH is looking better I will start a ten-week taper of my prednisone tomorrow.  This in combination with stopping the Norvasc yesterday and my week-long diuretic run should rid me of all this extra water, pending the ECHO.  I went and bought thigh-high compression stockings today too...they were hard to put on.  But I think they're gonna make a big difference.

The University of Minnesota pharmacies have been out of stock on the pill form of Acyclovir for months.  Instead of taking a pill four times a day, I've had to take 20mL of it in liquid suspension.  They received stock of the pill form recently, so when I got my refill today I received pills!  I'm finally able to put it into my pill box instead of lugging around a jug of liquid form and an oral syringe.  That's a lot less to carry.  I'm excited about it.

My next appointment is a checkup on Friday.  IRael and I will be out for the benefit Saturday, I hope everyone is able to attend!