Riding The Wave – Multiple Myeloma

“The only thing that saves us from the bureaucracy is its inefficiency.” – Eugene McCarthy 

OUR SAGA of sending Dave’s lab samples to Arkansas has finally, I hope, found it’s path from Dave’s blood/urine collection, to centrifuge, to shipment, to a lab somewhere on the campus of UAMS!

As some of you may remember in past posts, Dave didn’t do it for a whole year! There were several obstacles, seemingly not so big, but somehow insurmountable. I mean really folks! After everything we made go right to go back 2,200 miles for treatment over almost a year, you would think there wouldn’t be anything this caregiver, receiver of Sean Murray’s coveted “S’Myeloma Award” could get done, right? I continued to fail utterly. I wasn’t alone in this of course, but the last visit to Arkansas, our beloved Dr. Al-Sayed, after threatening to fire Dave as his patient (with a wink and a smirky grin) turned on your’s truly with not so much affinity as he showed Dave! He LIKES Dave, he PUTS UP with me! 🙂 I told him the only ACE left up my sleeve was to call Dave’s Mother. Dr. Al-Sayed liked that. He raised his eyebrows and got his eyes all big and said, “Oh Dave! You don’t want her to do that do you?” Chuckle, chuckle.

So, in our follow-up visit here at home, 6 weeks AFTER our visit to Arkansas (Dave was traveling) we finally met, not with the doctor (he’s annoyed at being Arkansas’ “secretary”) but with a new APN. At the end of the exam I once again, presented the “Lab Box” mailer and the lab request form and tried to explain, AGAIN, what we were in desperate need of help with. She immediately looked at Dave and said, “Dave! This is important!” THANK YOU GOD! She was INTERESTED and went out to the office lab and gathered up the head of the lab and brought her over. She had the same annoyed, obnoxious, “what’s wrong with our lab?” look on her face. But because the APN was expressing the NEED to help us, she did. Yes, she could centrifuge his blood for us. BUT… Dave would have to come during hours that she was there, M-F, before 5 pm, AND he would have to change the infusion center he normally goes to after hours and come to that one. Ask the nurse to draw his blood into the tubes and tell them to call her. She would walk across the hall, pick it up, centrifuge it and bring it back to Dave. Being quite emphatic that they would not send it out! Yes, yes, I understand. I’m not asking you to do that. OK, OK, we are finally getting somewhere.

Dave needs to collect his urine over a 24 hour period and a wonderful, dear, MM friend, when last in Arkansas, gathered up a Pee Pod for him to be able to take it work if he had to and mailed it to us. Hilarious! I said, “See Dave. People really CARE about you getting this test done!” Bob said, “Women have bags, but men don’t!” So this is a manly bag, designed to camouflage and hold the pee jug for apparently my manly man.

One of the problems we have with Dave collecting his urine is he doesn’t want to do it at work. So Sundays were best, except he couldn’t make it into a private lab the next morning to do the blood and have them send everything out because he is swamped with meetings! Once a month, folks, once a month! Forget that the private lab is about 100 yards from his office! I’ve been really trying, I really have. But from the doctor’s perspective, I was not getting a product and he was right to be quite tired of excuses! I was too! Both in myself, as well as Dave.

Ok. So now we have our cancer center lab contact willing to centrifuge the blood. I can shake up the urine and get it in the specimen bottle. Cool! We’re in business…

Not so fast!

You can’t just drop these babies in the mail! Whoa… I can’t? Nope! Though people clearly do. It is a Category B, Biological Substance, UN3373.  It requires special packaging and markings on the package. No problem, Arkansas has thought of all of that. Everything they give me qualifies – except… The box is too small for a FEDEX airbill label. So it must go into an outside envelope. But wait… You can’t put it in any envelope, it has to also be clearly marked Category B, Biological Substance, UN3373! No, you can’t write all that on yourself, there are regulations on how that is done as well! AND… you can’t drop it off anywhere, it has to be at a collection center “authorized” to accept such a package. They’ll pick up at my house IF I have the proper packaging, which I would have to set up an account for and order supplies. OR… I can drive 25 miles to the proper facility that can accept it and has the packaging (they think). UPS, same deal, and the collection facility to accept is in the same place, 25 miles away. Probably next door!

ARGGGGGGGH!

So I chatted with my local post office. They immediately wanted to put it into an envelope… “No.” I said. “You can’t do that with a Category B.” Blank stares. So they suggest I take it over to a different post office that all their stuff goes to. Cool. I call them and speak to a lovely woman named “Annette”. She totally knows her way around this. “No problem, yes they can take it,” and even gives me four departure times that the trucks leave this facility to go to another collection center to head out to the airport. How delightful. Useful information! And no I don’t have to repackage or even tape. They can use the box I have, no problem. It’s only 7 miles from my house. So I head over there with an actual sample ready to go and the lady behind the counter is perplexed. She starts to put it in an outside envelope and I say, “No. You can’t do that.” She says, “I can’t? Why not?” GEEZUS! It’s clearly labeled it’s a Category B on the box. I show this to her and tell her I spoke with Annette. She calls Annette out and begins to ask questions. I step back with a big smile, away from her employee and say, “These are not my questions. You and I already discussed this.” Annette smiled. She got my frustration. She told the gal what to do and I saw it labeled and carried to the back. God knows if it ever finally ended up in Arkansas.

In the middle of all of this, I called Arkansas as well. The lab orders were bad copies and I couldn’t make out the lab phone number. After several transfers and working it with the email contacts I had while on hold, and the general lab phone numbers from the website, I finally ended up on the phone with someone who knew what I was calling about, around the same time an email came in with the correct phone number! I had questions like, “If I don’t get the blood sample to mail until it’s too late in the day, should I refrigerate it?” Or “Can it go 2nd day air?” Stuff like that. Answers to both are “yes.”

Sadly, I can’t tell you all what to do if you are dealing with this, as it will depend on where you live and how close you are to a collection center who can accept a Category B. But I will tell you, that all of the companies were helpful and knew what I was talking about once I got to the right person. I learned a lot. Again, a bunch of stuff I wish I didn’t need to know about. I know many just pop that cute little box into an envelope and drop it off, but it’s actually illegal to do that since 9/11, at least. It’s kind of scary when you think of all the folks that are handling things and don’t even know it because other people, including them, are unaware of this rule about shipping lab samples. Anyway, the websites have basic information, but you can call and talk to someone who is up to date on how this should be handled. I was impressed, for once, with the consistent information I got from all three mailing companies. But the further you got away from those folks who specialize in the rules about it, the more deteriorated the understanding of the rules became.

But it’s done. Twice now we have sent it. And I now know how to send and where I will go to send. If Dave can just keep up with getting them done and home to me, I can do the rest. So far, so good. I just haven’t checked the other end yet to see if the lab reports are being processed at UAMS. Sigh….

“Extraordinary people survive under the most terrible circumstances and they become more extraordinary because of it.” – Robertson Davies

I don’t know if this qualifies! haha

Normally, as you know, I don’t put up labs and such, but in following up with Arkansas I got his from last month’s samples for those of you who like to see these sorts of things. labs from July

Tags: Category B Biological Substance UN3373, Lab Samples, Mailing