So here’s what the next stage of this blood stem cell donation thing entails – so you know, in case you’ve entered the national registry and ever get called as a match for someone.
I GET RED CARDED
So, last Friday, I went back to Dana Farber to go through Stage 3 of the donor process. (Stage 1 is getting on the registry. Stage 2 is confirmatory testing when they tell you that you could be a match.) Stage 3 consists of a few quick tests and a very detailed consult with a medical expert who tells you the ins and outs of donating peripheral blood stem cells (PBSC) or in some cases actual marrow.
This happens in their building on Brookline Ave. I got there easily enough last Friday -’cause you know dang well I didnt drive into the city– Commuter rail to Back Bay. Walk to Copley outbound T, get off at Brigham Circle, a right, another right, and Im there. I didnt get lost – which you know dang well I have before if you know me at all lol.
One cool thing is, the National Bone Marrow Donor Program (NBMDP) gives you case worker who not only walks you through the process but also walks you – literally – to all your mini-appointments. My caseworker is a very, very nice woman named Stacey. We met in the building lobby on I think the 2nd floor and she brought me to registration where another very nice woman put me in the system and issued me a red card – kind of like a credit card. I was told donors get red, patients get blue. I’m all good with getting the red one…
From here on out I bring my card with me wherever I go for donation-related stuff and it gets me registered quickly. It lets the different departments know who I am (and I guess to charge the donor program and not me for the tests since, remember, this is all on them or the recipient’s insurance…).
Stacey shared with me the itinerary of the day. I felt like I was on a cruise. And because Im a nerd, I said to her and the registration lady “Oh, like a cruise.” On to the next event…Lido Deck anyone?
After registration, the next thing on the itinerary was a vein check. This is about a 30 second exam where a nurse who’s up on this knd of thing checks your arm veins to see if they’re good for doing the donation. About 18% of women and 3% of men have veins too small to donate through the arm. Since I have had trouble before with people getting my veins to work, I had a sinking feeling the night before this test that I’d be one of the 18%.
Annnnd, I was. lol. And I don’t exaggerate when I say she figured this out in 30 secons lol. She flicked my arms a few times and the verdict was in. She comforted me by saying she too had small veins and couldnt donate through the arm even if she had 10 gallons of water. Oh- that was another thing- they tell you to really hydrate for these exams to help the blood draws, so I became familiar with many of the bathrooms in the complex. That really was too much information, wasn’t it?
All right, so, this news – about the veins not the bathrooms- threw me momentarily because if they can’t use the veins, they do a “central line” – which, as you ER fans out there know- is a little more involved and comes with more risks than the arm thing. A central line is going to require the tube going in a neck vein or sub-clavicle vein instead, and that’s gonna take a doctor knocking me out and cutting a little hole and shoving the tube in there. Well, that isn’t the technical term. lol
This was all new. I didnt think of quitting the donation at all- but it took a moment to re-calculate as the GPS would say. I wasn’t scared per se, more like a little worried, like “What’s this now?”. Mainly, I’d had time to adjust to the idea of the arm thing, so, I needed to adjust now to something a tad more involved.
I also learned that I was scheduled for a 2-day donation, which I didn’t know. Stacey and I talked briefly about scheduling and I was starting to wonder ever so little if I’d gotten myself into a lot more than I bargained for, though it wasn’t like a “Freak out moment.”
However, I was quickly put at ease by the next person I met who was NP (Nurse Practioner) Sue. As Stacey was telling Sue about the central line, Sue said “Good.” Then we stepped into the exam room for consultation- my next event – and she began by telling me central lines were the way to go because they let you have your hands free for the donation. An arm line, or whatever they call it, would require you to keep your arms on the armrests for 4-8 hours. She said it was easier, even if it had a little more “work” on the front end. I got to be knocked out for it instead of awake while theyre jabbing me in the arm. The more she talked– and I had before the vein check been suddenly wondering if I’d be able to use my hands – the better I felt that I had gotten the preferable option.
So, the consultation. After they check your veins, theyre going to sit you down with an expert like Sue who will give you a very detailed rundown of what you’re going to be doing – from what blood stem cells are, to why the cancer patient needs them, to all the stuff the team is going to be doing to your body. (Sidebar- it totally is a team involved in this. From start to finish I think I dealt with 14 people that day.)
Sue was thorough and clear and gave me the ins and outs of what the lead up to the donation and the donation itself would be like. Nothing was dumbed down and there was a ton of information. She covered all the bases. I feel like I gained an IQ point in that room. But she was also focused on the basics : what the different steps of the process are and how they’re going to make me feel.
I’d say this lasted a good hour. Let me give you the bottom line that I came out of there with: Five days before I donate , Im going back into Dana Farber and they’re going to give me a shot of this stuff that makes the bone marrow produce more of these blood stem cells. They watch me for about half an hour to see if I’m reacting fine, which 99% of people do. I go home with more of the shots in my possession.
The next three days, a visiting nurse (remember, this is all paid for by them) comes to my house and gives me a shot- or actually probably two because they’re small doses per shot (fun fact I learned from Sue). The side effects I am most likely to get are bone pain (’cause the marrow is on cell production overdrive- which means pain is a good thing for the procedure), headaches, nausea, and flu like symptoms. This is more common on the third and fourth shot. The treatment for this is – wait for it- tylenol. So we’re not talking serious mindnumbing pain, people. And, uh, I figure it has to be less painful than cancer.
Anyhow, you know I’ll be blogging on this, so I’ll tell you what it’s really like when it happens. lol.
All right, so, then on donation day — D-Day lol. What happens then?
So, that day, Im going to go in, maybe get another shot, maybe not- then get to donatin’ . Well, actually, prior to this I will get the central line – they give me a local anesthetic, cut and stick, and I go a little groggily on my way. More on that later. The side effects of the actual donation are also mild- stuff like tingling, lightheadness – and mainly due to the stuff they have to give you to keep the blood from clotting and not the process itself. ( Sue’s saying was “This is a process that is very well tolerated.” ) . And it’s all monitored by nurses.
I will donate for however long- more on that in a minute. Then the line comes out and then that’s that. I will feel “washed out” for a few days and then within a week, it’s behind me.
After I heard all of this, Sue gave me a quick exam – heart, lungs, eyes, throat, BP, weight, height- and then it was off to the next thing.
…which Stacey set me up with. This was the blood draw. Here, basically in the same suite of rooms, a guy who’s name I didn’t catch drew many vials of blood. I dont know, ten? He was amazingly good at getting my little veins to work and even commented that the person who said they were too small was crazy. I started thinking “No, dont make me get the arm thing, let me stay with central line!” Shows how quickly the mind can adjust, eh? I also had to pee to make sure I wasn’t pregnant or something. (Surprise, I’m not. lol.)
That done, Stacey made a few things clear about the tests. One was that the mandatory infectious disease one has to be done inside 30 days of the donation, so I was going to have to make another trip to DF the coming week. I also had to do a pregnacy test closer to the donation date too. All right, so a few new dates to come in. More on that in a sec. Next was a chest x-ray, then an EKG. A lot of sticky things being put on and then taken off. But so, so quick and easy and again, everyone was so nice. And that was that.
All told it was, as I as told, about 4 hours. Not quick, but definitely not difficult.
RE-ARRANGING THE PHERSIS PIECES
So to recap, at this point, there had been three surprises – well, four: that I would be getting a central line, that I would be donating for 8 hrs maybe, when I thought it would be about 4; that I would be donating two days, when I thought it would be one; and that I was going to have to make at least one more trip here for tests. Oh, I was also kind of surprised that I was going to definitely need a ride home after the end of the donation day(s), but, duh, that makes sense.
As it turned out, many of these things were later to be resolved in good ways, but that’s where I was at the moment. And I was okay with it because, again, I’m not the one with the %$#%ing cancer!!!
So, all told, it was about four hours of medical exam stuff, mainly the time was taken on the consult with NP Sue, which I was very happy to have. Not a quick day, but certainly not a difficult one, and Stacey really guided me through the whole process.
Next, this is how those few surprises got resolved. I thought I was going to go in May 11th, get the line, start the donation late morning for eight hours, get a ride home from Alex, a ride back from Alex, do another x number of hours, then get another ride home from – wait for it- Alex.
For those of you who dont know who Alex is, he is my brother and he works in the city so driving to DF isnt a big deal to him. However, he is also a man with a wife, an 8 yr old, two year old twin sons (one of whom can now escape from his crib…) and a very busy job in human services. So, I dont like to be asking him for two days of livery service. He wouldnt have thought twice about it, but, it wasnt, in my mind, ideal. I was thinking “Maybe I’ll ask for a hotel room…but still, how would I get from…” The other option, lest you forget I have another sibling, was my sister who was volunteering to motor me around those days. This wasn’t any easier an option Becca’s got a husband, two kids in school, a few parttime jobs …and lives in Chicago. lol
So, I was kind of wondering about the logistics.
Well, the Lord doth provide, in this case, via Stacey lol. She emailed that, considering things, what would probably be best, time wise, would be if I get the line the afternoon of the tenth, chill in a hotel for then night– local, and on them— and then go in as early as possible on the 11th to do one day of donation, and be done with it, line out, that afternoon.
There was nothing about that plan that wasn’t awesome. lol.
So that’s the schedule now. She also asked if I could come in for that infectious disease test but said I could get my manadatory pregnancy test (again, I “lol”) somewhere local instead. Something about the timing.. No problem.
Timing, incidentally, I have learned is very important in this process.
For example, I have to get my info/test results in by x day because my recipient – I havent settled on a nickname for him yet lol – is going to get the transplant on y day and they need the info by z day for him, and there isn’t a lot of leeway. Like I was going to do the re-testing on a Friday but they needed the results before the weekend or something so now I’m going in tomorrow (Thursday.).
All of this reminds me this is serious business and while I’m going about my day to day, eating burritos at the train station (Back Bay, new place, really good, a little dry lol….) and knowing I’ll be back to normal life about May 19th or sooner – this guy is going through weeks of serious in-hospital preparation. His family and friends are visiting him there. Their lives are in a holding pattern. And they probably have been for a while.
And I watch the beehive that is Dana Farber, all the people working there, Stacey and Sue, and the blood guy and the vein woman, and the people behind the desks and the lab people and the test people, and how profiecient and kind they all are, all with the goal of playing their part of saving this guy’s life ( and all the other patients- because there’s so many people being helped there, so many cases, so much activity. And they do this everyday….) . And it’s so weird I’m in any way involved in this because I am – literally- some woman who walked in off the street. It’s just weird that my blood is part of some guy’s treatment plan. Crazy.
And that’s about where I’m at now. So, it’s at this point where I leave with the parting plea to anyone reading this to get on the registry. Because you dont know what’s in you’re carrying around in your bones just sitting there waiting to be of use to some total stranger in total need. You can do this. Stop by www.marrow.org and order your home testing kit.
Thanks for reading.