Saturday, March 26, 2011
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!
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:
Friday, March 25, 2011
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
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
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
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.
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
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.
Friday, March 18, 2011
It also helped that I've been feeling good all day. I've finally left the zombie-fog induced by the chemo bag behind. They still expect my white blood count to drop over the next couple of days so I could get pretty tired and I'll have to wear a mask when I go out since I'll be susceptible to infections. Once my counts come back up I should be ready for stem cell collection pretty quickly after that. So now it's just back and forth to the clinic for growth factor injections and labs until it's time for collection. The nurse also suggested I request fluids every morning to help keep me hydrated since my blood pressure was still dropping a little when I would stand this morning, and my pulse was racing a bit.
If I can manage to get myself to the clinic early enough to beat the rush (I waited 2 hours this morning!) there should be time to enjoy the 80 degree weather they are forecasting all week.
In other news my hair is definitely starting to fall out a little. Nothing major yet, but I'm shedding more than usual. I'll probably have to buzz it pretty soon, hopefully the head coverings I ordered arrive before it comes to that. There are sure some interesting options out there, hopefully I can find some I feel good about.
One of the guys I've seen at the clinic this week has one like this...
Thursday, March 17, 2011
Sorry to keep you all hanging yesterday, it was indeed a long day and I was zonked. I didn't actually get to meet with the doctor, just the PA again. He didn't have much to report, just generally checking up on my labs and schedule. My light chain level is decreasing so that's a good sign that I'm responding to the treatment! I was quite annoyed for him to tell me though that I did not in fact need the PET scan for which I had just starved myself for 12 hours. Um yeah, that would have been nice for you to catch BEFORE they did the $4000 test. GAH! He swears he will prevent them from billing my insurance and he better follow up on that or I'm going to have his head. Definitely will triple check everything they order from now on!
Today is Day 11. I got my last dose of Velcade today and my induction round is now officially over!! Now I just continue the growth factor shots until I'm ready for collection then I'll get a little break before getting started with the first transplant. It will be nice to get home for a little bit and see the kiddos. A birthday celebration for a special little 5 year old is on tap for sure!
Tuesday, March 15, 2011
So now I'm 9 days in. The "induction" phase is technically 11 days, but the only thing left is one more injection of Velcade on Thursday. Tomorrow I officially start the stem cell mobilization. This means I'll get growth hormone shots twice a day for 7-10 days to promote production and release of stem cells from my bone marrow into my blood where they can be more easily collected. To do the collection they will hook me up to an apheresis machine that will collect my blood, separate the stem cell fraction, and return the rest back to me. The stem cells will be counted and processed and frozen down on liquid nitrogen until its time for the transplant. After that is done I'll get a little break!
Tomorrow will be another long day. I have to be there at 9 for my first growth factor injection, then I have a PET scan at 12:30. This means I can't have any carbs after 12:30 am, and no food at all after 6:30 am. Not fun! After that I finally meet with Dr. B again at 3 pm. I saw him in passing today in the hallway, but I haven't met with him yet on this trip. I'm anxious to hear the results of all the biopsies from last week. After that it will be back to the clinic for another growth factor shot.
Hopefully my energy will be up a little bit tomorrow, I was super zonked today!
Monday, March 14, 2011
Happy FIFTH Birthday to my baby girl!
Not a baby anymore for sure. It's bittersweet being away from her on such a big day, but I know I am giving her the best gift.
Here are some pics of my lovely silly wonderful girl...
Sunday, March 13, 2011
Saturday, March 12, 2011
Here are a couple of pictures of me and the munchkins the day we left. Olivia insisted we get a picture of the two of us with long hair so she could be sure she would recognize me if it's all gone when I see her next. It was an amazing feat to get Oden to sit still in front of the camera to get a decent picture. For some reason he will pose for them at school and even say cheese like a little ham, but when either one of us points a camera at him he runs the other way. Such a stinker...it's a good thing he's so darn cute!
Friday, March 11, 2011
In addition to the biopsy and fine needle aspiration I went to get my hair chopped to make it easier to manage in the short term and as a baby step toward the "bald is beautiful" look that seems to be on the horizon. I asked one of the clinic nurses if she knew a good place to go since she was talking about living in the area, and she gave me the number of her stylist. Mondi was a sweetheart and she gave me a great cut. She's an independent stylist with a cute little studio space, so it was a nice quiet experience. She gave me a serious discount too so she gets an A+ in my book. Let me know how you like the new look!
At 11 inches it's long enough to donate, but I suppose I could have a wig made for myself!
Later in the day it was time to get my "chemo bag" and it definitely isn't a stylish accessory but I do have to carry it around like purse for the next 5 days. It's pretty heavy too so now I have two heavy purses to carry around. One is full of normal purse crap and paperwork I need to have with me, and the other is full drugs, saline, infusion pumps, and a chemical spill cleanup kit..."just in case". Ha...it's perfectly fine to pump it into my body, but if it spills I have to use a special clean-up kit and bring it back for proper disposal! They also gave me a shot of a blood thinner to help prevent embolisms from the thalidomide, and a couple of anti-nausea meds. We headed home only to be called back to say they had forgotten to give me the Velcade that should have been scheduled for today (but got left off somehow). It wasn't on my schedule either, but when I looked back I saw it is part of the study protocol for day 5 so I'm glad they caught it and it was just a quick shot.
Here's me posing with my new buddy in front of one of the myeloma research displays in the cancer center.
So now for the day I'm up to 13 different meds, once I take my thalidomide in a few minutes. We got the thalidomide mix-up straightened out too. The girl at the desk looked horrified that it had happened, but she quickly set it straight. The even owed me $10, because my copay is only $25. This is amazing considering the sticker price for the pack was $3589.16!
I'm still feeling good so far even despite all the drugs and procedures. I'm a little sore from the biopsies and I had a little bit of nausea the first night, and then again after the melphalan, but it was really minor.
Thursday, March 10, 2011
I had to track down the PA in the morning to find out if they really wanted me to do the vertebroplasty or not. He said they did so I hurried over to my fine needle aspiration appointment (where they were supposed to do both procedures) and signed in. Over an hour and a half later a nurse came out and brought me to a room and said the doctor wanted to talk to me. The doctor it turns out really did not see the urgency in doing the vertebroplasty. He reviewed the previous scans and said I am at risk for a compression fracture, but there was no urgency to do a procedure that would require conscious sedation and recovery. Fine by me since I had two other appointments that afternoon.
After that it still took another hour and half for them to get me on the CT table for the fine needle aspiration. I arrived at 12 for my 12:30 appointment and they weren't ready for me until 3pm. So by the time they got started on the fine needle aspiration I was already 45 minutes late for the bone marrow biopsy. Luckily they were waiting for me by the time I got there at about 4.
After that I headed over to the infusion clinic (an hour and a half late) for my first dose of melphalan . Melphalan is a chemo drug that is a derivative of mustard gas. It attaches itself to DNA and prevents DNA replication in rapidly dividing cells (like cancer cells). It was to be just a "baby dose" so not many side effects were expected.
After the uneventful infusion the nurse was to change the dressing on my central line. The line was thankfully feeling a bit better and the weird sensation subsided, but the adhesive from the dressing was really irritating my skin. The new one felt a little better at first, then it started to get really irritated too.
Later before bed I noticed that the stitches were poking through the film covering it. This wasn't good because it's really important to keep this thing clean and dry and a break like that could let bacteria in. So I covered the whole thing with a sheath they had given me (in lieu of Press'n Seal, which actually works pretty well!) to protect it overnight. I headed in this morning for my daily blood draw and asked them to change it again. She noticed how irritated my skin was and used a different type of cover, but this one is super itchy now too. So I guess I'll have to see if they have any other ones to try.
After that we were free for the day. We checked out the house and it seems like a good deal. It's nothing fancy but well kept and in a nice quiet neighborhood. It's much better than the current place. It has two bedrooms, which will be important when other caretakers are here with me. The owner is really nice and flexible so I think we will go for it at least through the transplants.
Tomorrow will be another long day, I'll get two more biopsies and start SIX new drugs. Altogether they are referred to as DT-PACE, Dexamethasone, Thalidomide, cis-Platin, Adriamycin, Cyclophosamide, and Etoposide.
Dexamethasone is a steroid that targets myleoma cells. Thalidomide has various anticancer properties related to modulating the immune system, but the mechanisms aren't really understood. Interestingly thalidomide was first used to treat morning sickness in woman in the late 50's and was responsible for causing thousands of cases of severe and devastating birth defects. Since that time several other legitimate uses have been found including myeloma treatment. It's very highly regulated. Somehow though the pharmacy still managed to give me another patients prescription for it today...different dosage and dosing instructions! I didn't notice until I was unpacking it when we got home. OOPS! It had a sticker price of over $3K. I hope the poor guy didn't need it today. I have a feeling someone at the pharmacy is going to be in BIG trouble when I bring this to their attention. The Dex and Thal are oral meds, they the other 4 ( cis-platin, adriamycin, cyclophosphamide, and etoposide) are given as an infusion over 4 days so I get the pleasure of getting my "chemo bag" tomorrow. I'm not holding out much hope it will be a stylish accessory. ;p This lovely 4 drug combo consists of more traditional chemo drugs that target the DNA replication process (like melphalan) to prevent replication of cancer cells.
Altogether these drugs aren't expected to make me feel too great, so the next week will probably be a bit rough. We're pretty well settled in now so I think we're ready to bring out the big guns for 4 days. Wish us luck!
I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
I have indeed bought several big bats...thanks Danielle!
Wednesday, March 9, 2011
Tuesday, March 8, 2011
Tomorrow I'll get another fine needle aspiration AND a bone marrow biopsy to monitor how the Velcade is working. I'm not too thrilled about getting these back to back tomorrow and I'm even less thrilled they want me to do both again on Friday! Hopefully my bones can take it. I can refuse any of them if I want, but the results are important so I don't want to have to do that. As long as insurance pre-certifies them I'll go for it. I have a feeling insurance isn't going to be too thrilled either though so maybe I'll be spared a couple of procedures.
Outside of the clinic related stuff we are slowly managing to find our way around. We've got the grocery store down and we found Target today. We're researching other places to stay since we don't love the furnished apartment we rented. It's adequate but it's a little small and rough around the edges. The carpet is a bit dingy and the dust seems to be kicking up my allergies a bit, which won't be acceptable during transplants. We're supposed to see a small furnished house on Thursday that seems promising. The woman who owns it rents mostly to patients and her mom has myeloma so she's very familiar with the needs of patients. It's two bedrooms and includes weekly cleaning and all utilities. It will be open right as the lease ends here so hopefully it will work out.
Feeling ok so far, just drained from all the running around at the medical center, trying to manage all the information flying at us, and trying to find our way around.
Monday, March 7, 2011
After this I was supposed to pick up some info and check in with the nurse at the clinic. We figured we would have most of the day to finish getting settled in and check out some alternate lodging options (since the place we rented for the month leaves a little to be desired). The nurse told us I could go ahead and randomize and get started instead of waiting (yay!) so it turned in to a full day at the clinic (boo!).
I guess an overview of the protocol is probably in order now that I used the term randomized out of the blue. Basically there are two "arms", or versions of he protocol they are comparing to each other. The standard arm is a bit longer and contains two additional cycles of chemo, the lite arm is a slightly scaled back version. Here is the breakdown:
two 11-day cycles of a 7 drug regimen
two 11-day cycles of a 7 drug regimen
3 drug maintenance for 3 years
one 11 day cycle of a 7 drug regimen
one 11-day cycle of a 7 drug regimen
3 drug maintenance for 3 years
The Lite arm requires ~ 1 months less "face time" in Arkansas and can shorten the time it takes to get to maintenance by ~2 months. Because of all the logistical considerations we were really hoping for the Lite arm. I wasn't holding my breath since luck hasn't exactly been smiling down on us these past few months, but I did seriously want to hug the nurse when she came back and told us it would indeed be the Lite arm.
I had to meet with the PA first and talk to another nurse, then it would be off to the clinic for my first dose of one of those 7 drugs in the initial regimen. That all sounds simple but somehow it turned into a 5 hour project! The only unexpected thing that came out of that project was a mention of possible needing a vertebroplasty to prevent compression fracture of one of my vertebra. There seemed to be some confusion as to whether this was really necessary, and then some confusion as to why no one had mentioned doing it before. Then after all the confusion died down there was a consensus to have the radiologist review the old PET scan again and make a recommendation. Fine by me, especially now that I see the worlds leading authority (wikipedia of course!) calls the procedure controversial.
The other eventful thing was getting my list of "other medications". These are not chemotherapy drugs, but rather drugs to help keep me from getting sick while getting chemo. This includes an antibiotic, an antifungal, two antivirals, and heartburn medication.
After all that it was time to hurry up over to the infusion clinic for the first dose of something to kill the cancer cells! They told me it would be a quick "push" and I'd be out of there in no time "once they get you all set up"...and it was that getting me all set up part that was the kicker. We waited for about an hour for the drug to be delivered. At least they gave me a heated blanket while I waited, and we chatted with the nice couple in the next bay over. He's 12 years out from his diagnosis.
Finally the drug came, looking very nondescript in a syringe. Velcade, 3.5 mg. Probably >$1000 for the contents of this vial.
It's a newer generation drug called a proteasome inhibitor. It basically mucks up the garbage cans inside your cells and prevents the trash from getting picked up. Cancer cells generate a lot of trash and the buildup causes them to self destruct. Clever right?
It was an entirely uneventful i.v. injection, but the boxing gloves are out and the fight is officially on!