Day two of collection was actually even better than day one (even though I was hooked up for a shorter amount of time). I collected 19.3 million cells on day two so my final number of banked cells is 36.4 million cells. This is enough to do nearly 10 transplants. I'm only slated for 2 with the initial protocol, but I like the idea of having a large excess backup immune system in the bank.
After collection I got some platelets then headed over to have my line removed, or "pulled" as everyone kept saying. I ended up in the table again exactly 24 hours after she put it in. Once it was over I felt like "yanked" might have been more a appropriate term, because that was exactly what she did. To her credit she warned me it wasn't going to be pleasant, and she advised me to take a deep breath and hold it. But man, it wasn't fun. A little lidocaine would have gone a long way...
I was really happy to run into two of my fellow patients in the line placement waiting room, they had both gotten the call that they were ready for collection. Unfortunately there was no doctor available in line placement (he got called into a 4 hour emergency surgery), so they might have had to wait until Monday to start collection. I hope they got it worked out and were able to start earlier. I'm sure I'll be running into them again during transplant and my thoughts will be with them...they were both very sweet. So many wonderful people down here!
After the pleasure of having my garden hose yanked we went back to the clinic for discharge instructions. It took a while and we ended up skipping lunch so we were hungry, but it was worth it to be freed. I didn't get to meet with Dr. B this time either. I thought he was out of town, but turns out he had been very ill and had been hospitalized briefly earlier in the week. The PA that discharged me said he had just been to visit him and he's feeling much better, but he's certainly not the type that is used to being the patient.
As part of the discharge I met with the transplant coordinator and got the dates nailed down. I want to return pretty quickly because the sooner I get started the sooner I will be done with it all, and the longer I am out on disability the more of a financial hardship it will be. When I return I have to do what they call "restaging". This will be two MRI's, a bone marrow biopsy, a pulmonary function test, and a cardiac echo. (It usually includes a PET scan too, but the PA thought he could get me out of this since I already had the unnecessary one and nothing shows up on them anyway.) After these I have to meet with Dr. B and get a new central line before I can start the transplant. So the schedule basically had to planned around when Dr. B would be in town to be able to see me, and I would have t0 be there at least 2 business days before that to get all the tests done. The only date the really works to see Dr. B is April 12th so that pretty much sets it all up.
I'll get the new line on the 13th then start the chemo for transplant on the 14th. They give the chemo over 4 days, then on day 5 they infuse the stem cells. My blood counts will drop over 7-10 days from the chemo while the stem cells repopulate the bone marrow. Once the bone marrow has recovered my counts will go back up over the next 7-10 days.
So for now I'm free to go home for a little while. Our flights are in the morning, so we spent most of the day today packing up. We moved some things over to the house we'll be renting for the next few months. We have to clear out of this place since I won't be back before the rental period is up. The new rental doesn't technically start until April 1st, but woman that owns the house was nice enough to let us store some things there early. We really lucked out finding this little house.
We also had a nice dinner out last night at a local place called Loca Luna. It was little pricier than we expected, but it turned out to be worth it...the food was great. It's not often I completely clear a plate of a dinner sized portion at restaurant, but I literally almost licked this plate clean. This morning we found a cute little place for breakfast called B Side. The food was great there too. Little Rock is growing on me, it's really a cute little city.
The other excitement of the day was another trip to get my hair cut. Just like clockwork it started really coming out on yesterday two weeks after starting the chemo bag just like the nurse said. We made a trip to Supercuts, and the poor girl looked absolutely terrified to have to take the clippers to my head. She used a 6 guard so it's not completely bald yet, just very very short. My mom exclaimed "You look like your brother!". I thought I would be more emotional about it, but once it started coming out it was a nuisance and I was ready to be done with it. And now I get to wear my fancy head coverings. ;p I actually think I'll be much more sad to see my eyebrows go! I promise I will post some pics of the new look soon.
Thanks again to everyone for reading and sending messages of support. I'm really happy to be going home for bit, although I am sure it's going to be hard to readjust to the kid alarm clock after sleeping in down here. ;p Can't wait to see the kiddos though, it's going to be harder to leave them each time I think.
Anyone sending mail or packages please don't send anything else to the apartment address since I won't be here after today. Send me an email if you need the new address!
Saturday, March 26, 2011
Let's take a moment to remember Geraldine Ferraro
This amazing woman and political pioneer had been living with multiple myeloma for 12 years. She passed away this morning in Boston. Here is a link to a CNN article with the details:
http://www.cnn.com/2011/POLITICS/03/26/obit.geraldine.ferraro/index.html?hpt=T1&iref=BN1
She had been treated by Dr. Anderson at Dana Farber. Here is a link to her first person account of her story posted on the Dana Farber website:
http://www.dana-farber.org/pat/patientprofiles/firstperson/geraldineferraro.asp
http://www.cnn.com/2011/POLITICS/03/26/obit.geraldine.ferraro/index.html?hpt=T1&iref=BN1
She had been treated by Dr. Anderson at Dana Farber. Here is a link to her first person account of her story posted on the Dana Farber website:
http://www.dana-farber.org/pat/patientprofiles/firstperson/geraldineferraro.asp
Friday, March 25, 2011
Collection is finished!
All done with collection and should be discharged today!
Yesterday I collected 17.1 million cells in the 2 hours they had me hooked up. So today they ran me for another hour and half. I should end up with way more than the 20 million they wanted.
Now I'm waiting for some platelets so I can get my line out. The collection process depletes platelets and I need a certain level so I'll be sure to clot properly when they take the line out. After that I'll head over to get the line out, then to the clinic to be discharged!
Thursday, March 24, 2011
Stem Cell Collection: Day 1
Today was an eventful day!
Labs this morning showed my white cell count had jumped from 1.84 yesterday to over 6 today! My platelets were up too. My APN was pretty confident the procell count would indicate I would be ready to start collection today so she rushed me over to get my line swapped for the catheter needed to do collection. The catheter is called a Quinton catheter and it apparently has a wider lumen than the line I had in already. People kept referring to it as a "garden hose" so I was figuring it wasn't going to be entirely pleasant. While I was waiting for the line swap I got the call that the counts looked good and I needed to be over at the Apheresis Unit by 2 pm. It was 1:10 so the race was on! Luckily they have their act together in Line Placement and the lovely Sheila got me out by 1:50. (It wasn't too unpleasant, but it is sore now.)
We headed over to Apheresis and for a minute there was a question as to whether they would start today since by the time I checked in it was after 2pm. Luckily the doctor said to go for it and start today. This was great news since they have to collect for at least two sessions. If they pushed me to tomorrow I would collect Friday and Saturday, but I wouldn't be able to get my line out until Monday. Starting today I can finish collection tomorrow, get my garden hose out, and hopefully be discharged tomorrow to go home. Fingers crossed collection goes well! The goal is 20 million cells, enough to do many more than the two transplants I'm scheduled for.
Over at apheresis they got me hooked up to the machine pretty quickly. Basically they hook you up to the machine by the two tubes to the catheter (the wider lumen is needed to allow a large amount of blood to flow easily). Blood flows out one tube to the the machine and the machine uses a centrifuge to separate out the cell fraction containing the stem cells. The rest of the blood is then returned to you through the other tube. Here is a picture of the machine in action.
The bag hanging in the middle contains the stem cell layer that was separated out. A little noisy but completely painless. They collected for about two hours. Once they are done they send the bag to the lab where they process the cells. This includes counting them, testing to make sure the cells they healthy and free of any bacteria or viruses, and cryopreserving them so they will still be good when I'm ready for transplant. We won't know how many cells we got today until tomorrow morning.
I'm really thankful that I bounced back so quickly this week and was ready for collection today. I've gotten to know a few other patients in the clinic who started around the same time I did, and many of them have had complications that have slowed them down. My fingers are crossed they won't be far behind getting to collection.
Labs this morning showed my white cell count had jumped from 1.84 yesterday to over 6 today! My platelets were up too. My APN was pretty confident the procell count would indicate I would be ready to start collection today so she rushed me over to get my line swapped for the catheter needed to do collection. The catheter is called a Quinton catheter and it apparently has a wider lumen than the line I had in already. People kept referring to it as a "garden hose" so I was figuring it wasn't going to be entirely pleasant. While I was waiting for the line swap I got the call that the counts looked good and I needed to be over at the Apheresis Unit by 2 pm. It was 1:10 so the race was on! Luckily they have their act together in Line Placement and the lovely Sheila got me out by 1:50. (It wasn't too unpleasant, but it is sore now.)
We headed over to Apheresis and for a minute there was a question as to whether they would start today since by the time I checked in it was after 2pm. Luckily the doctor said to go for it and start today. This was great news since they have to collect for at least two sessions. If they pushed me to tomorrow I would collect Friday and Saturday, but I wouldn't be able to get my line out until Monday. Starting today I can finish collection tomorrow, get my garden hose out, and hopefully be discharged tomorrow to go home. Fingers crossed collection goes well! The goal is 20 million cells, enough to do many more than the two transplants I'm scheduled for.
Over at apheresis they got me hooked up to the machine pretty quickly. Basically they hook you up to the machine by the two tubes to the catheter (the wider lumen is needed to allow a large amount of blood to flow easily). Blood flows out one tube to the the machine and the machine uses a centrifuge to separate out the cell fraction containing the stem cells. The rest of the blood is then returned to you through the other tube. Here is a picture of the machine in action.
The bag hanging in the middle contains the stem cell layer that was separated out. A little noisy but completely painless. They collected for about two hours. Once they are done they send the bag to the lab where they process the cells. This includes counting them, testing to make sure the cells they healthy and free of any bacteria or viruses, and cryopreserving them so they will still be good when I'm ready for transplant. We won't know how many cells we got today until tomorrow morning.
I'm really thankful that I bounced back so quickly this week and was ready for collection today. I've gotten to know a few other patients in the clinic who started around the same time I did, and many of them have had complications that have slowed them down. My fingers are crossed they won't be far behind getting to collection.
Wednesday, March 23, 2011
1.84
That was my white count as of this morning, not quite 2...but a huge jump from yesterday's 0.36! My APN (who I adore, by the way) said she'll order my first "procount" with the labs tomorrow. This is where the count the circulating stem cells and determine when I'm ready to start collection. I will also probably get my central line swapped out for the special catheter needed for collection tomorrow. So I guess we'll plan to be there bright and early.
Other than that, just enjoying the sunny 80 degree weather and not doing a whole lot else aside from resting and going back and forth to the clinic. We watched a bad movie last night (The American with George Clooney), and took a trip to the bookstore today to pick up some new books.
Fingers crossed I'll be ready for collection quickly, I'm looking forward to going home!
Other than that, just enjoying the sunny 80 degree weather and not doing a whole lot else aside from resting and going back and forth to the clinic. We watched a bad movie last night (The American with George Clooney), and took a trip to the bookstore today to pick up some new books.
Fingers crossed I'll be ready for collection quickly, I'm looking forward to going home!
Tuesday, March 22, 2011
2 is the Magic Number
Contrary to what De La Soul would have you believe...TWO is in fact the magic number. My white blood cell count needs to get back up to 2 before I can go forward to stem cell collection. Sunday I was 0.23, Monday I was 0.27, and today I was 0.36...so I at least seem to be creeping back up. I had a little more energy today too so I'm taking that as a good sign. I have to say though that fever paranoia has set in though after four days of being neutropenic. They sent me home with this funky little infuser of antibiotics I have to administer if I spike a fever of 101.
My APN also gave me a prescription for some mouthwash to help with my irritated throat. She called it "magic mouthwash", and it's apparently some concoction they came up with for cancer patients. I thought she was just being cute calling it "magic mouthwash", but there is is right on the bottle!
In other news my friend, fellow science geek, and Scorpio buddy Shoba was kind enough to send a link to the current issue of the journal Clinical Cancer Research (one of the top 20 Oncology Journals) where they feature 7 articles focusing on progress in multiple myeloma treatment written by some of the big names in the field.
http://clincancerres.aacrjournals.org/content/17/6.toc#CCRFocus
The abstracts can all be viewed but the actual articles do require a subscription to access. If anyone is interested in some "light" reading I can access the articles so shoot me an email.
My APN also gave me a prescription for some mouthwash to help with my irritated throat. She called it "magic mouthwash", and it's apparently some concoction they came up with for cancer patients. I thought she was just being cute calling it "magic mouthwash", but there is is right on the bottle!
In other news my friend, fellow science geek, and Scorpio buddy Shoba was kind enough to send a link to the current issue of the journal Clinical Cancer Research (one of the top 20 Oncology Journals) where they feature 7 articles focusing on progress in multiple myeloma treatment written by some of the big names in the field.
http://clincancerres.aacrjournals.org/content/17/6.toc#CCRFocus
The abstracts can all be viewed but the actual articles do require a subscription to access. If anyone is interested in some "light" reading I can access the articles so shoot me an email.
Sunday, March 20, 2011
Changing of the guard.
Alex flew back home on Friday and my mom flew in yesterday. She's enjoying the 80 degree sunny weather, but we have to find her a place to get a pedicure so she can wear her flip flops.
My white blood cell count dropped yesterday right on schedule. So now I get the pleasure of sporting a mask in public and dousing myself constantly with hand sanitizer. I made the mistake yesterday of skipping putting my contacts in, and my glasses kept getting all fogged up from the mask. Lesson learned. ;p I'm feeling a bit more tired now that my white blood cell count is down, but at least it's helping me sleep better at night. I've also had a little bit of a cough/runny nose/sore throat the past couple of days. They did a nasal swab to test for viruses the other day but the results aren't back yet. My blood cultures have been negative and no fever so it's just an annoyance at this point and part of me thinks it might even be allergies.
Back to the clinic for my second shot of the day in a little bit. They like to do these injections in the belly, the don't really hurt but I've got little dots all over from all the sticks.
My white blood cell count dropped yesterday right on schedule. So now I get the pleasure of sporting a mask in public and dousing myself constantly with hand sanitizer. I made the mistake yesterday of skipping putting my contacts in, and my glasses kept getting all fogged up from the mask. Lesson learned. ;p I'm feeling a bit more tired now that my white blood cell count is down, but at least it's helping me sleep better at night. I've also had a little bit of a cough/runny nose/sore throat the past couple of days. They did a nasal swab to test for viruses the other day but the results aren't back yet. My blood cultures have been negative and no fever so it's just an annoyance at this point and part of me thinks it might even be allergies.
Back to the clinic for my second shot of the day in a little bit. They like to do these injections in the belly, the don't really hurt but I've got little dots all over from all the sticks.
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