I forgot to update last night. The pain meds definitely helped tremendously, although it was in general an uncomfortable evening.
On to this morning… since it’s the weekend and the BMT Clinic at Roswell doesn’t open until 8am, I got to sleep in an hour. I did wake up once during the night from my ribcage aching, but fell back asleep within about 10 or 15 minutes. When I woke up my hips still hurt and again my lower back and ribs, but not nearly as bad as last night. Got my shots, same as usual and headed home. I took a few Tylenol just to be safe since yesterday afternoon seemed to be rougher than day 1.
I got a lot done this morning and afternoon, a lot of cleaning and finally unpacking my office (after 7 months of living here) to make room for an air mattress for my mom. She’s going to drive me to the collection Monday and seeing how early it is it’s easier to leave from my place since I live just a few blocks from Roswell. I have to tell you, I have nearly no pain today. I don’t know if it was the tylenol early on, or the keeping active. I have a feeling that after the pain I had they may have lowered the dosage of my Neuopogen ® injection, but the nurses didn’t mention anything. If that is the case I just hope that it doesn’t make my donation any less effective for the recipient.
So… lunch time now (the mild nausea and lower appetite seems to have gone away too) then I’m actually going to go to an annual summer BBQ that should be fun. I’ll stick to my water, but no need to miss the chiavetta’s chicken and Julie’s delicious brocolli salad.
This evening brings me to a different kind of pain. Again, I’m not complaining, just trying to paint a realistic picture for those of you who may do this yourselves in the future. Rather than just an achy back and hips, the place that is most affected for me is my ribcage and sternum as well as my skull. I say skull because it’s not a typical headache, it feels like my skull hurts. When I cough or sneeze (I have bad seasonal allergies, has nothing to do with the injections) my skull hurts, similar to when you cough hard when you have a sinus headache except this is the back of my skull, not the sinus area. But it is not persistent like a headache. The ribcage pain as well seems to only be when I exert myself, or when I stand up from a resting position, my ribs throb a little bit until I get used to being upright. So, the pains are not a constant, and if I relax and stay on the couch with my movies, I’m okay. I also took the prescription pain meds they gave me which helped considerably more than the Tylenol, especially on my achy back and hips.
So for day two, I experienced different pain. This is the bone pain they asked me if I had experienced. It’s not like anything else I have gone through in the past. On a scale of 1 to 10, I’d say overall around a 5 or 6, with the medication closer to a 4. I don’t want to discourage anyone from this, because it is a small price to pay and will only last a few more days. From what I’ve read, on the 5th injection day when they start to collect the cells from your blood, you leave that day feeling much better. So, until then, I will relax on the couch with my movies and kitty cats.
I had the same basic routine this morning; the nurse checked my vitals, checked with me on any pain I was feeling and I received my second set of injections again in both arms. I was given the option of my stomach or arms, but I stuck with the arms. It hurt just a little more than yesterday’s shots, but still not too bad.
Today I chose to stay awake rather than napping right after the shots. Perhaps I was better off napping. Rather than taking hours for the soreness to begin, I had a achy back within an hour or so. The top of my neck where your neck meets your skull was sore too. Took a few tylenol and went for a visit at my parents.
From there the bone aches and soreness seemed to get worse and it started to affect my hips and sternum/rib area as well. Again, achy, certainly not severe but enough to be uncomfortable. I did notice sitting made it worse. If I get up and walk around I feel better. Also when walking, my gluts and hamstrings feel sore as if I worked them out hard yesterday (which I did not). The tylenol doesn’t seem to get rid of the aches, although it dulls them slightly.
I will say that I’m hypersensitive to pain, but at the same time I can deal with it pretty well. I did however call Roswell to get prescription pain medication. Based on last night, I know tonight will feel worse so I want to be prepared. I also called my NMDP rep Jamie to inform her. She said the doctors would evaluate to see if my Neupogen ® dosage would need to be lowered. She didn’t think so since it wasn’t dibilitating and also assured me that the pain is a sign that the injections are working. My marrow is pumping out those stem cells just as they should be. Yay!
All in all, achy but dealing with it. I can still run my errands and clean the apartment and all that good stuff. But I do have a feeling when I sit down later with the movies I rented, I may have to take one of those stronger pain meds. That will help me sleep too.
Up and at ’em… 6:45 am. WOW! For me this is a feat. I’m feeling better this morning, just a little soreness at the base of my skull/top of my neck. Like I slept funny on it, but I didn’t. Feeling much better than last night though. Off to Roswell!
Today went pretty well. I laid low most of the day catching up on some DVR. I did notice that my stomach was a little off. I wouldn’t say nauseous, but I had no appetite. That being said, I went out to eat with an old friend and managed to eat half of my piri piri chicken dinner and a nice burrata cheese, tomato and petite basil appetizer. I can always make some room for dinner at my favorite Bistro Europa.
Sitting at the bar was uncomfortable though. My lower back is definitely sore, enough that you’re fully aware the pain is there, but not enough to stop me from going out to eat. When the nurse asked me if I had felt bone pain before, I said no. Thinking back, I did when I broke my collar bone, but that was WAY worse than this. This pain is more like an achy joint (I have bad knees and know that feeling all too well), except for the achy joint is my whole lower back and the tops of my legs too (where the high marrow producing femurs are). I’m hoping that tylenol does the trick. If it’s persistent enough to keep me awake, I will have to get some tylenol PM for tomorrow.
Again, small price to pay in the grand scheme of things and nothing compared to what the patient is going through. I’m not posting any of this to complain, I just want to share what I am feeling so that any of you who are curious and considering joining the registry, or are already a match and preparing for your own donation know what to expect.
I arrived at Roswell today for my first Neupogen ® injection. They drew some blood today and did another pregnancy test. Took my vitals and the nurse went over what to expect. Same warnings of bone pain, head aches, fatigue and possible flu like symptoms. I got my injections in the arms, nothing more than a little shot. I get allergy injections in my arms every 4 weeks, so this was nothing new to me. This stung just a tinge more than an allergy shot, but no big deal.
I ran a few errands and came home after thinking I’d start some cleaning, but I was exhausted, so instead took a 3 hour nap. This may have absolutely nothing to do with shots, because I had to be there at 7am and I typically sleep until noon, so that probably explains my sleepiness. That, and I had to take a xanax last nite to force myself to sleep before my typical 2-3am bedtime.
Woke up with just the tiniest bit of soreness in my lower back, similar to how I used to feel when I worked on my feet as a server/bartender all day. Nothing major and I’m sure a tylenol will take care of that. So… time to do that cleaning now.
PS. I work for the government and we receive 7 days (not a week, but 7 actual working days) administrative leave for bone marrow donation. It doesn’t go against my sick leave or vacation time. BONUS! So, this is not my normal routine to have all this time on my hands just incase you were wondering.