First of all, I spoke too soon with my last post about building stem cells. Tuesday evening I felt a slight back ache and took some tylenol in an effort to prevent bone pain. Tuesday morning I started to feel it and took a norco. It helped a little but the pain just kept getting worse by the time 3 hours wore off of the norco. It felt exactly like labor pain and although Drew will be 24 in July I immediately recognized that pain. After I had a few doses in me by the evening the pain was okay and I was able to space the doses out more from the 4 hours in the morning and afternoon to almost 6 hours before I went to bed but I was more off balance and dizzy and frankly high. Thursday morning Robert left- he was so sweet he was trying to move his flight but it wasn’t realistically going to happen and I told him I’d be fine after getting all that Norco in me. Dad came over Thursday afternoon and I was able to space the norco farther apart so that was good. Friday morning I woke up without pain so I took one norco in the morning with my other meds but didn’t take another.
Friday Dad and I were early at the hospital for my 730am appointment at the Rube Walker Center. So we had some breakfast and walked around a bit. I’m back to my walker for distance due to the extra fatigue and dizziness thanks to the norco. So the nurse there collected a couple vials of blood to be tested to make sure I wouldn’t need a blood transfusion and then sent me to Interventional Radiology to have my vascath inserted. They were running behind for some reason waiting on the doctor to come which kind of threw off the rest of the day but it was okay. They nurses were great and told me exactly what to expect and when and offered fingers to squeeze during the uncomfortable parts. It really was not that bad it was more of a mental thing knowing it’s in my neck. But it’s pressure and a little uncomfortable but the doc numbs the area so I think they do everything they can to make you comfortable.
So there are 3 lumens coming out of the catheter which is in a central vein that leads to my heart. One of them was collecting my blood to put it through this machine to separate out my stem cells and return the rest of my blood to me, the other was for fluids and an anticoagulant and the third I don’t think they really used….maybe just to draw blood or maybe it was where my blood was being returned to me? I don’t know for sure. I was pretty out of it. The tegaderm patch that covers it also pulls on your skin so it makes it hard to move your head….kind of like shrugging your shoulder and not being able to move it back down. But hey it’s better than what we deal with in our diseases every day! Not the most flattering pic of me (dad said I look like I ran into a vampire) but you can see what it looks like.
I had to wait for a patient transporter to bring a wheelchair to take me back to Rube Walker Blood Center because I was so tired and dizzy and wouldn’t have made it back there even with my walker. So that took a little waiting too but then I went right back there and to my room at Rube Walker. The nurse said my blood work came back they said predicted I would make 40 million stem cells and only 2 million were required! He was a little worried about the time and I told him that there was a hold up with the doctor in IR and then transport and he said they would see if we could finish by 430 or not. Then my transplant nurse, Michelle, from Dr. Burt’s office came and reiterated that my labs looked great, the 40 million prediction calculation and the concern about finishing in time for the lab to count. She said that if I can’t finish by 4:30pm the lab would count them the next day but they wouldn’t admit me as they were sure I’d meet the 2 million minimum.
So my blood was collected by this Harvest Machine thing and separates my stem cells and puts them in that bag on the top right and the rest of my blood stuff like white and red blood cells and platelets are returned back to me. It felt like there were a lot of tubes. It’s a long process and normally they collect for 4-6 hours. I didn’t have that much time because of my delay in IR. I think it was maybe 4 hours at most. So while you’re sitting there you’re attached to the machine so you can’t go to the bathroom but they offer to bring a bedpan (thank goodness I didn’t need it) and they offer food and beverages and pillows and blankets to make you comfortable in the reclining chair. I could hardly keep my eyes open. I wasn’t comfortable enough to really sleep but I dozed off a bit here and there. I didn’t get any homework done that I was planning to do because it was too hard to focus but that may have been from the norco.
They decided to shut it down at 4:15pm to allow time for it to cycle out and give the lab my stemmies to count since they weren’t concerned about the number but they needed a number over 2 million so that the doctors order to take out my vascath could be followed.
So at 4:25 pm the lab came and got my stem cells and had me sign off and the nurse wrapped my neck with ace bandage looking thing so I wouldn’t look so freaky walking around the hospital going to get something to eat. Dad and I went for dinner and made a stop at Walgreens and got back early for our 6:15pm time back and the nurse showed me his pager that the lab counted 19.47 million. Part of me was disappointed that this was half of the predicted 40 million but really they stopped early and it doesn’t matter! I got more than 2 million! The girl from the lab said he most she has seen was 70 million.
So the nurse then had to remove the catheter and line and the stitches. It was uncomfortable but not bad. Cleaning the wounds burned a little but it was necessary. He then put steri-stips over the wounds and dressed it and applied pressure (which probably hurt the most but again necessary). He then watched me for half an hour to make sure I didn’t bleed out. The discharge instructions the nurse gave were to make sure that the gauze didn’t turn red because if it did I needed to go straight to ER. He also said I could take tylenol for discomfort and gave me something to help remove the clear bandage thing in 24 hours. He said to let the steri-strips come off in the shower after 48 hours, no strenuous activity, etc.
The clear stuff they put over the dressing still had my head in a funny position the way it was grabbing my skin but I was so tired I found a comfy position in bed (thanks to the sleep number bed from dad I was able to adjust my head height….). I didn’t take a pic of it yesterday but after sleeping it is a little looser so here is what it looks like the morning after:
So now my stem cells are being stored by a process called cryopreservation which according to the handbook is a freezing technique until I get them back for transplant.
Next steps for me are really to rest….and then next week dealing with some of the cosmetic stuff.
Monday I have an appointment at Prentice for their Look Good Feel Great program which is a free makeup class for chemo folks…..and after that I’ll be going to visit my stem-cell sister Daniela. 🙂
Thursday I have an appointment again at Prentice for a wig as part of the same program. I told the lady brunette chin to shoulder length and she will have some wigs to try on. Since I will have already started losing my hair by then my sister will be coming over to shave it Wed night so the wigs will fit. My natural hair is crazy thick.
Then I’m admitted June 1st for transplant!
Thank you to everyone for your support….my parents have also been overwhelmed by the support they have received from their friends too.
Good luck to everyone pursuing this process or who are in process and for everyone else please support Kirk’s REGROW Act so we can make regenerative medicine available sooner to help with all kinds of conditions….one guy I met on a facebook page is now driving after previously being blind through a similar procedure! All kinds of things can be cured and if your family doesn’t need it now….they will eventually. So please help support the act by calling your senator/state rep as the bill is in both the house and senate.
You are very brave, Ellie! Jack & I pray for you everyday that you will be 100% in the very near future!