Wednesday, April 29, 2009

I just flew in from Arkansas and boy...

...are my arms tired and my meds lost!

Never a dull moment. I arrived with five prescriptions to fill. I already flew out with several bottles of pills and I didn't feel like bringing an entire medicine chest with me (nor do I think I'd have been allowed to fly with 20 bottles of pills). I figured why bring a bottle of 10 Levaquin pills when I'd need to refill the prescription anyway, and since I had a fresh prescription, I would just fill it in LA.

So I got here with prescriptions for Levaquin (antibiotic), Acyclovir (antiviral), Thalidomide (poison), Dexamethasone (poison) and Heparin (syringes full o' stuff that keeps the blood from clotting in my CVL). I arrived at the airport and it was a beautiful little girl had a sign welcoming me with balloons, and my wife videotaped the arrival...I ran over and dropped my bags and threw my arms around her. It must have seemed like out of a movie to anybody watching.

We drove to a pharmacy intending to just drop off the prescriptions, knowing it would be a while before they could fill them all. That's when we learned that (a) they couldn't fill a Thalidomide prescription, which was just as well because (b) the nurse had written two prescriptions for Acyclovir and none for Thalidomide!!!, (c) they don't have Heparin, (d) I forgot that I need anti-neuropathy meds -- Cymbalta and MetaNex, which I didn't have a prescription for.

(By the way, I will be put back on Tamiflu -- still have some pills left -- when I hit the second transplant so neener neener neener to anybody sleeping in line outside RIteAid trying to score some of this during the Swine Flu 2009 tour!).

Long story short, we scrambled to get a prescription for Thalidomide from Caleb (BB's physician's assistant) and he found a Walgreen's that would ship it overnight, so that arrives tomorrow, allegedly. That solved problem A and B. Problem C was a little tougher, because three pharmacies and a doctor's office said that Heparin syringes are only released to doctors and they wouldn't give me any, and that my only option would be to go into the doctor's office daily for a line flush and be charged a full doctor's visit!!!! I put the good people at Pinnacle Care on this. Around this time I realized I'd also left the kits to clean and change the dressing on the CVL. D'oh! Pinnacle Care found a place that would deliver this and the Heparin, and needed only to get a California doctor's signature on a prescription. They hounded Dr. SH, my original hematologist, and got this taken care of and so today, I got two giant bags full of medical supplies delivered to my house! Problem C solved.

We got Caleb to write prescriptions for the Cymbalta and MetaNex, so that solved problem D. Everything is in order.

Tonight, I showed Parker my CVL and she watched as I explained everything about it and how we needed to keep it clean and make sure it didn't get clogged, and then I flushed the lines with saline and heparin. She was very impressed, noting that my CVL was "weird" and she hoped I would have it removed soon. :)

It's GREAT to be back at home -- sleeping in my own bed, spending time with my family, etc. We dropped Parker off from school today together, and picked her up together...we had a nice little lunch in between pharmacy visits...even a visit to the DMV wasn't so bad because it felt normal.

My low-grade fever / back pain / night sweats continue. I had suspected this was due to hematopoesis / stem cell engraftment and some fellow Myeloma voyagers have confirmed this, which is good to know (still not sure about the back pain but it explains the flu-like symptoms). So now, the night-sweats and fever are more of a nuisance than anything else -- I'll have to change the dressing pretty soon but hey, I've got something to do it with! :) Pinnacle Care is going to send a former nurse over to explain very carefully to me exactly how to do it, although I already know, but I figure the first time doing it myself it couldn't hurt to have somebody around who has done it 1,000 times before.

Well those are my scattered thoughts. I'm tired, still, but otherwise feel good, especially now that I know the fevers aren't anything to be panicked about. :)

Be well, all of you, and thanks for your continued support!