M is for Myeloma is a place to chronicle my family's newest 'adventure' living with multiple myeloma to keep family and friends updated and also hopefully help others living with the disease.


Wednesday, October 26, 2011

Maintenance. 2 weeks down...154 weeks to go!

I started maintenance two Wednesday's ago. So far it's going ok. I'm still adjusting to the effects of the drugs and trying to work out the best schedule, but overall it's going fairly smoothly.

I also started working again at the beginning of October (part time on a rehabilitative status, so technically I'm still in disability) so that has made life much busier keeping on top of all the schedules. It's good to be back though. Overall I feel like we are finally getting back to "normal" though, which feels great. It's been a completely insane year. Last year at this time (I specifically remember it was right around Halloween) I was dealing with acute bone pain and suspected I fractured another rib...which had me absolutely terrified. It turned out there was no fracture (which was even scarier!) and that set off the process of me finding a new doctor to figure out what the heck was going on.

Here I am a year later waiting for an injection of a proteasome inhibitor (a type of compound I had used experimentally in the lab during my grad school days) and trying to figure out the best way to deal with my rapidly regrowing hair, which, btw, seems to be a lot more gray now...having cancer must be kind of like being president, it ages you faster from all the stress! ;p

I am really looking forward to the holidays this year. Myeloma completely ruined them for me last year. The doctor actually said he considered waiting a few days to give me the biopsy result, but in the end decided it was better to call me 3 days before Christmas. Needless to say I was a complete zombie. This year will be different! :)

As for the details of maintenance, the regimen is:

20 mg dex, once a week (orally) 2 mg
Velcade, once a week (sub cutaneously)
15 mg Revlimid, once a day for 21 days then 7 days off

The dex I take the same day as the Velcade injection, and the Revlimid I take every night before bed. The dex I think is the worst in terms of side effects so far. I get all amped up on the day I take it, which is also the day I sit around in the waiting room for hours at the cancer center waiting for the Velcade, so that isn't exactly a winning combination! Luckily the dex hasn't been interfering to much with my sleep so far. Many people say they can't sleep at night on dex day, but I seem to still get tired at the same time...must be those kids running me ragged in the evening! I wake up feeling pretty crappy the next day though...headache, grumpy, flushed, short of breath. The first week it continued all day into Friday, last week I started feeling better Thursday afternoon. The Revlimid has just been causing some mild GI issues. They told me it could swing from constipation to diarrhea, and that's pretty much how it has been so I'm still kind of waiting to see how that will, ahem, regulate itself. The Revlimid is also expected to decrease my blood counts (from hitting the good cells in the process of hitting the bad cells). This week was my first drop in platelets, but my white count is holding strong and my hematocrit is still increasing (still recovering from the second transplant). The Velcade injection has been uneventful. Some people have a local reaction or redness at the injection site, but that hasn't been a problem for me.

So we are going to just keep on trucking. Halloween is coming up and the kids are VERY excited. Olivia is going to be the Wicked Witch of the West and Oden is going to be a skeleton. They both have an overactive sweet tooth (like their momma) so the chance of candy overdose on Monday is very real!

Wednesday, October 12, 2011

Hello again Dex, can't really say I missed you.

Today is the day I start maintenance.  My appointment for Velcade injection is set for 1pm.  So the dex goes down the hatch now, then I'll take the Revlimid before bed.  Hopefully it all goes smoothly...wish me luck!

In other news my friends M & J in Little Rock just welcomed their first grandson on Monday.  I know they are just THRILLED!  Congrats to them and their family!

Sunday, October 2, 2011

Living strong today

And everyday! I'm finally feeling like things are getting back to "normal" now that the intensive part of treatment is over. My hair is growing like crazy and I started back to work this past week. I'm on a rehabilitative status for now (24 hours per week) at least until I get settled in to maintenance therapy. I should be getting started with that next week. I was waiting for my Revlimid proscription to be processed. Since it is teratogenic (causes birth defects) it is very tightly regulated and they needed two negative pregnancy tests 10-14 days apart before it could go through. The specialty pharmacy called me on Friday though and it should be coming early this week. Thankfully my insurance is covering the cost and my copay will only be $25 per month. The actual cost for a months supply is over 7K! Considering I will be on it for the next 3 years, $25 is much easier to handle. ;p

Wednesday, September 14, 2011

Wow, has it really been a whole month?!

It doesn't seem possible, but I will own up to procrastinating...and I won't be offended if you want to call me a slacker!

I was indeed released from MIRTs daily scrutiny back on August 15th. Alex and I packed up to head out for the loooong drive home the next morning since we wouldn't be needing the car in Little Rock anymore. We stopped in Louisville to spend the night at my SIL and BILs house. Louisville is about halfway so it made a good stopping point and gave us a chance to visit, meet our nephew Jayden (who was born back in March during my first round of treatment), and see their brand new house. My BIL was out of town for work, but it was nice to visit with Laura, Jenna, and Jayden. Here is a pic of me with my niece and nephew.



We made it home late on the 17th and it was great to be home and see the kids. There is nothing like sleeping in your own bed and showering in your own shower! I was feeling pretty good (better than after the transplants) but it still took a while to get my strength back. It proved to be a busy couple of weeks though, we actually had a lot of excitement in Maryland! On August 23rd we had the quite unexpected 'pleasure' of experiencing the 5.9 magnitude earthquake centered in Virginia. This was definitely wacky! We had experienced a teeny tiny earthquake the previous year and I felt that one...it felt like a truck rumbled past the house. Just one quick shake and I didn't even know it was an earthquake until later in the day. This recent one though, the whole room was shaking and it lasted for 20-30 seconds...kind of a wild ride! It was the big news for a couple of days...until it became clear that hurricane Irene was headed our way! She showed up that weekend late Saturday overnight into Sunday. Thankfully we didn't have any damage or trees down, and our power stayed on, but others in the area weren't so lucky. Alex's mom had three inches of water in her basement and some people were without power for a week! She even had the nerve to disrupt the first day of kindergarten for Olivia!!

That's right folks, my baby was starting kindergarten! It had a been a main goal of mine to be done with the intensive part of treatment in time to send her off to kindergarten, and I'm so thankful I was able to accomplish that. Through all the geological and weather related excitement we were also making sure we everything prepared for the big day! This meant making sure we had everything in the list of required supplies, making sure all the required paperwork was in place, and making sure we had some non-stained cute back to school clothes!

Thanks to Irene things got pushed back a few days, but once the day arrived things couldn't have gone better. I was very VERY proud of my girl. She handled it like a champ...no tears, no fuss, no problem at all! Here are a couple of pics of the first day.





Labor day weekend we had two birthday parties on Friday and Saturday evenings, which gave us a little chance to catch up with some friends. Then we mostly took it easy on Sunday. Labor day itself was an exciting day though...my other baby turned three! He's very excited to be a big three year old! We had cake and ice cream for him that evening, but the real party is still in the works. It's crazy that my baby is three, but I have to say that being done with diapers is SPECTACULAR! Here are a couple of pics of my handsome devil....one with a blue ice cream tongue, and one obviously quite pleased with his new Star Wars toy.





After all that add another whole week of drenching rain in Maryland (thanks to tropical storm Lee), and that brings up almost up to speed.

I'm actually back in Little Rock as I type, waiting to catch a flight home later today. I flew in on Sunday to get started with restaging for a Tuesday appointment with Dr. B. I've had the pleasure of staying with my friends M and J, J just finished up his consolidation and was discharged Tuesday. I am SO very grateful that they have opened their hearts and their home to me and my family. Meeting them has truly been a gift!

Restaging went fabulously, that is if you can ever really call 3+ hours in MRIs and PET scanners topped off with a large needle being jammed into to your bone fabulous! All good news at the appointment, still in complete remission! I had been scheduled for a vertebroplasty for a lesion on my T12 vertebra, but Dr. B wanted to wait to see if it would heal up on it's own with a few months of Zometa treatment. So I'm headed back with my orders to start maintenance therapy...Revlimid daily for 21 days, and dex and Velcade once a week. This will go on for 3 years. Yes you read that right, THREE YEARS! I'm hoping the side effects will be minimal, but only time will tell. The great news is that I've been approved to get my Velcade as a subcutaneous injection. Velcade is normally given I.V., which requires either getting an I.V. placed weekly, or getting a venous access port implanted. I had decided I would go with getting a port placed (it's kind of like a central line that is implanted entirely under the skin), to avoid the damage that can happen from frequent I.V. placement and caustic drug infusion. Then I started hearing that some centers had started giving Velcade as a subcutaneous injection after a large study showed it was just as effective and resulted in fewer side effects (namely peripheral neuropathy, which is annoying at least and extremely painful at worst). Indeed my home center was moving to all subcutaneous for Velcade so I brought this up at my appointment here in Arkansas and was approved to go that route! Hopefully this won't start a riot among other MIRT patients! So I happily canceled both the vertebroplasty (where they inject cement in the lesion to prevent vertebral fracture) and port placement. Now I'm relaxing for the day before heading to the airport to catch a flight home this evening. M and J had to go to Memphis for the morning so I'm here keeping their sweet boxer, Lucy, company. She's happily snoring on the couch.

Saturday, August 13, 2011

Bye bye mask!

Hopefully we will NOT meet again anytime soon!

My white count was 2.47 today, a nice big jump up from yesterday and enough to leave the masks behind. I can't say I will miss them, all the ones I tried were way to big for my tiny elf head and I can't count the times I tried to drink something forgetting I was wearing it. Doh!

My platelets were up again too (41) which means I'm definitely making platelets. Self sustained platelets and recovered white count are the two things they look for in order to discharge, and Caleb said today that he expects to discharge me Monday! It looks like I'll avoid needing any platelet infusions this time. They normally give them when you get below 20, but they will also give them before central line removal if you are still below 50 so you will clot properly after they yank it. I think I'll get to 50 by Monday.

The only glitch right now is my CRP (the inflammation marker that can signal infection). It's been creeping up over the past few days. I've also had some nasal congestion. The CRP level is in the ballpark that signals potential viral infection so they did a nasal swab today. It can also rise just as a reaction to the growth factor shots and increasing white cell count, so it could be nothing. I don't have any other symptoms so no one seems very concerned about it. Caleb (Dr. B's PA-I love when he's in the infusion clinic on the weekends!) and I discussed the possibility of allergies today. My runny nose started the morning after storms came through and is worse when I am outside. He said his allergies have been acting up since the rain started too.

I dropped my brother off at the airport today and Alex flies in tomorrow. It was nice to spend the week with my brother. We don't live in the same city and this was the most time we've spent together in YEARS! I'm glad he was able to come down and chauffeur me around. It makes me miss living closer for sure.

Alex and I will be gearing up to make the drive back to MD. If all goes smoothly we'll be heading out Tuesday morning and will be home by Wednesday night. It's been a long hard 6 months traveling back and forth and I'm glad the period of extended stays in AR will be behind us soon. After this I'll be starting maintenance, which I can do at home, and I'll have to come back a few times a year for 3-4 days at a time for restaging/monitoring.

I'll be home just in time to see my daughter off to her first day of kindergarten, and celebrate my son's 3rd birthday!

Thursday, August 11, 2011

White count is RISING!

Up to 0.35 from 0.15 yesterday! So it seems I didn't completely bottom out this time, a few people had said some people don't go as low with consolidation since it's lower doses. My platelets were down slightly compared to yesterday but there hasn't been a big change over the past few days, so hopefully we'll see an uptick there by tomorrow. I just need to avoid catching any nasties and I should be ready for discharge by Monday or Tuesday!

It rained here all day today, which has actually been awesome because it's nice and cool. It's cooler right now at 75 degrees than it was getting even as the overnight low just last week. We are thinking of catching a movie tonight.

Exciting results in CLL using receptor modified T cells

Penn Medicine News: Genetically Modified "Serial Killer" T Cells Obliterate Tumors in Patients with Chronic Lymphocytic Leukemia, Penn Researchers Report

Came across this through the CNN site. This group completed a very small trial to study the safety of their approach, and found an unexpectedly potent clinical response. Their approach is somewhat similar in concept to the natural killer cell trials they are doing here at MIRT, but this approach is more targeted. In the natural killer cell trials they rely on natural ability of those cells to generically attack and destroy cancer cells. The cells are expanded over levels that would normally be found in the body and infused back in to the patient. The Penn group on the other hand have taken T cells from the patient and genetically modified them to respond very specifically to an antigen found on the surface of CLL cancer cells. They infused the cells back in and found they actually expanded and persisted for months. It's making a splash because they saw a very dramatic clinical response in one of the patients (complete remission of very advanced disease), and also because the cells expanded in the patient and stuck around for months. Apparently a few other groups have tried similar things int he past and saw only modest clinical effect and the cells were rapidly lost from the body. This group tweaked things a little and may have hit pay dirt, only time and more testing will tell.

This same approach could potentially be used for other cancers (including myeloma) by changing the antigen that is targeted.

Here is the link to the actual NEJM article
http://www.nejm.org/doi/full/10.1056/NEJMoa1103849?query=featured_home#t=articleTop

Wednesday, August 10, 2011

Counts are dropping, otherwise business as usual

My white count finally dropped under 2 on Monday. 0.9 Monday, 0.33 Tuesday, 0.15 today. My platelets were 40 yesterday and 37 today, so lower but not a big drop between the days. That might signal they have stabilized, which would be good. I'm day 7 post chemo today and pretty much things are going as anticipated. My blood pressure has been much better the past couple of days so no more getting fluids every day. It's just labs, growth factor shots, and avoiding germs until my counts recover. I see the doctor on Friday, and if everything goes well I'm hoping to be ready for discharge by Monday or Tuesday.

My brother is here with me now. My Dad flew out Sunday just in time to miss some rain and slightly cooler temperatures. We've mostly just been laying low other than going to the clinic. Today though since it was cloudy and a little cooler we went down to the River Market area and also checked out the Clinton Library. It wasn' crowded at all so not much worry about germs. Pretty neat to see the library, it's a very cool building.

Last night I made my final attempt to try to find decent pizza in this town. Now, we did like the brick oven place (ZaZa), but we were still looking for good regular style pizza. Damgoode Pies was the last place on the list of places everyone tells you to go, so we decided to try it. My Dad had even just sent a message that he saw a recommendation for it Food Network Magazine. After we picked it up we saw it looked pretty promising, but once again we were pretty disappointed. It was decent but nothing special. The crust was better than at the other recommended places we had tried, but the sauce was pretty bad. So from now on in Little Rock it will be the brick oven place or bust!

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Monday, August 8, 2011

Still waiting for my white count to drop

The nurses are very anxious to start giving me growth factor shots, every day they bring all the supplies over in anticipation...but so far my white count has stayed above 2. My platelets were down pretty significantly yesterday, but my white count is still holding fast around 3. I guess we'll see what today brings! Feeling pretty good otherwise and my chemistries have all been good, just getting a liter of fluids every day to help with the blood pressure.

Yesterday some thunderstorms rolled through (we missed the rain being in the clinic) but the storms amazingly cooled things off a little for the evening. It was actually nice out and there was a nice breeze. I'm sure it's back to 100 today, but it was a nice little taste of normal weather!

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Saturday, August 6, 2011

Gave my APN a little scare yesterday

Just doing my job, keeping her on her toes!

Seriously, I'm 100% fine, but I guess she wasn't really listening when I told her blood pressure was going to get low. I had already caused the blood pressure machine to beep it's warning the day before (right on schedule as I had already told them to order fluids for me that day). The liter of fluids helped immensely and I went on my way. Yesterday I was actually feeling a little better but the blood pressure machine again showed me dangerously low, and my pulse was racing to compensate. 166! Yowza. This got my APNs attention real fast. I tried to assure her this was pretty standard for me and it would come down once I got the fluids, but she still seemed quite worried. It's her job to be worried so I understand. Luckily things did settle down, but it not enough for me to escape taking an infusion pump of fluids home last night. Better safe than passed out! The funny thing is though that I never feel dizzy even when my BP is a ridiculous 86/47.

Other than the blood pressure issues, I'm feeling pretty good. No major issues and the chemo fog has lifted. Just waiting for my counts to drop and staying out of the heat. I'm glad my taste buds have normalized a little because for some reason it was sweet things I couldn't tolerate this time...and a pint of Ben an Jerry's was impatiently waiting for me in the freezer. Red Velvet Cake = heaven.

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Wednesday, August 3, 2011

Something is backwards here.

It's been more than 24 hours since my last dex dose, yet here I am wide awake at 1 am! I didn't have any trouble sleeping while I was on the dex. Go figure!

So here I sit at 1 am eating a bean burrito (thankful for a good appetite!). It was another long trip to the clinic today, nothing exciting just had to wait for a potassium infuser. Wasn't a bad day to stay inside though, the temperature topped out at a record breaking 114 degrees here in Little Rock! You know it's bad when even the locals are complaining.

Now that the bag is off and the dex and thalidomide are done, I've just got a couple of doses of Velcade left to go for this round. Otherwise it's just waiting for my counts to drop and recover before I can get on home. My dad is here for another couple of days then my brother flies in from Boston. I'm sure my dad is getting bored of watching Man vs. Food and Iron Chef while I snooze, but he's been a good sport so far.

Off to try to sleep, glad I've got my trusty sheep to count...thanks Beth!

Tuesday, August 2, 2011

Last night with my buddy

The bag comes off tomorrow! So far feeling ok, just have that foggy groggy feeling and my taste buds are all wonky. My appetite is still strong thanks to the dex, so we'll see how that goes over the next couple of days after I "come down". I've just been resting and sleeping a lot, not such a bad way to pass the time when it's over 100 degrees outside! My dad tells me 109 expected tomorrow. Oy.

Had a long trip to the clinic today, waited 2 hours just in the waiting room. Pretty quick once we got back though thanks to Teresa, who is one of the sweet transplant nurses. I wasn't expecting to get back to the transplant section, but she told me they take all patients back there when transplants are slow. I didn't miss the creamed corn smell, that's for sure!

So tomorrow I come off the bag then I expect to feel crappy for a few days as I drop the water weight I've gained from the dex. I hate being puffy and red, but c off the dex is too much fun either. I already warned my APN she better order up some fluids for me!

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Saturday, July 30, 2011

In an effort to get more pictures up on here...

Here is my "buddy". Wherever I go it goooooes! Fellow children of the eighties please feel free to curse me for the brain worm. ;p I forgot how heavy it is with two infusion pumps in it! I also included a picture of the thalidomide. Looks pretty innocuous at first glance, but the image is to remind you how dangerous it is for pregnant woman. Down the hatch...bye bye under the radar myeloma cells!

Doxorubicin going in!

Here's a pic of the lines from the infusion pumps to my central line. The line on top carries the cisplatin, cyclophosphamide, and etoposide. The line on the bottom (orange) carries the doxorubicin (aka adriamycin). When I glanced down I saw hadn't made it's way all the way up the line yet (it infuses in pretty slowly), so you can see orange in the line to the left of the in-line filter but clear fluid still to the right.

Back in Arkansas!

I flew in Wednesday morning to get started with restaging (2 MRIs, blood draw, bone marrow biopsy). This is my last trip where I'll have to stay for an extended time! After this I'll move on to maintenance therapy, which I can do from home. I'll have to come back for check-ups every few months, but no more being away for weeks at a time. This round (consolidation) is very similar to the round I had on my first trip down (induction), but reduced doses so it should be easier (knocking on wood!). It's VTD-PACE...velcade (V), thalidomide (T), dexamethasone (D), cisplatin (P), doxorubicin (A), cyclophosphamide (C), etoposide (E). For the PACE part I get the pleasure of being hooked up to an infusion pump for 5 days again...can't wait to get my buddy back! Lol.

My flight got in about 10:30 on and my dear friend M, was kind enough to pick me up and bring me back to her house where our car had been parked. I didn't get to check out the new place we rented this time until after my first MRI and the blood draw. If you remember, we gave up the little house we had rented for the transplants since we would be gone another entire month. I used a corporate rental agency to reserve a 2 bedroom apartment in a complex other patients had recommended. It's in west Little Rock, so it's a little farther away from the medical center (and all our favorite restaurants), but it's a nice area. I was a little nervous after our first not-so-great experience doing a furnished rental, but thankfully this place is MUCH nicer. I got settled a little then had to head back to the medical center for my second MRI at 8 pm. I doubt there are MRI machines anywhere else that get as much use as the ones there...they run pretty much constantly more than 12 hours a day and mostly on myeloma patients! The second MRI was the long one where the do spine, pelvis, head and shoulders. It takes about an hour and 40 minutes total in the machine. It's a test of endurance to keep still and calm for that long, and it seems I always manage to finally doze off right before they need to reposition me or give me the contrast injection. I also was fighting a tickle in my throat at one point and it was torture trying not to cough. I usually don't get too anxious, but I might try taking an Ativan next time. The next morning I just had to get in for the oh-so-fun bone marrow biopsy at 9:15. I didn't wait long and my tech was pretty good so it wasn't too painful. This was the 7th one I've had since all this started and it wasn't among the top 3 most painful.

Of course the fentanyl lollipop helped take the edge of too! In fact I decided it would be a good idea to hang around for a while afterwards to wait for the fentanyl to wear off before driving, so I headed to the myeloma clinic to make sure things would be in place to get started with the chemo. If there is one thing I've learned it's to always follow up and double check that things are in place! I was scheduled to see Dr. B on Friday afternoon and the plan would be to start chemo on Saturday, but that would require getting a central line placed...which can only happen during the week. I knew I didn't have an appointment to get a line placed or start chemo because they wanted to see my lab results first, so instead of assuming that would all automatically happen I went over and asked to talk to a nurse in the clinic.

The first thing she said when she came out was "Girl, what is going on with your CRP?". She had pulled my labs and seen that my CRP was elevated. CRP (C-reactive protein) is a marker of inflammation that can signal infection so they want to see it in the normal range before they start anything that will compromise your immune system. Normal is under 10 mg/L, and I was at 19 so only slightly high...but high enough that it called a Saturday start to chemo into question. :( I explained I had been sick then week before (luckily the sore throat cleared up after a few days, but the congestion was lingering a bit), and we agreed it was probably on it's way down from that. Sure enough, a quick check revealed I had been 33 the week before, but she said we would have to repeat it Friday. So we reworked my Friday schedule and she sent the order for my line placement over so things would be set if I got the go-ahead. She moved my appointment with the doctor to the morning and I was to be there at 8:30 for the blood draw. Things were sounding good!

But if there's another thing I've learned...it's never expect things to run smoothly on a Friday in myeloma land!

I went in for the blood draw, admittedly 30 minutes late, then just headed to the clinic to wait for my 10:30. I got called back to a room really fast, but then found out some of my restaging test results weren't back yet...the DWIBS MRI, and the bone marrow/gene array. I knew this was a bad sign, a sign I would be waiting there for a while. Over the next two hours I got a few updates that they were still calling and trying to get the DWIBS results. It had been escalated to Caleb to work on at some point, but eventually (at about 1:30 pm) when it still wasn't back they said they were taking me down to see Dr. B anyway. I was third in line once I got down to the fourth floor where he sees his patients and within a few minutes the current patient came out of his office. A second later he came out too, he said hello and hugged everyone, then apologized and said he needed to go get something to eat and he would be back in twenty minutes. GAH! Now I had actually just been wondering if he actually stops to eat on the days he sees patients, and I am glad I found out the answer. I can't say I was glad it was holding me up longer, but such is life. He has lost a noticeable amount of weight since his surgery in March and I want him to take care of himself so he can take care of me! My nurse came down a few minutes later and told me to go get my line placed then they would bump me in front when I came back. Unfortunately my CRP number still wasn't back (I would find out later they messed up and didn't even run it) so I didn't know yet if I would be starting chemo the next day.

So on we go with the Friday madness! I headed over to line placement, which for those in the know had always been done in the old hospital building near PET scan. Its a hike from the myeloma clinic. Once I got there I was kindly informed that they were now doing the line placements at Interventional Radiology in the new hospital. The waits at interventional radiology are notoriously long so I was worried, but luckily I was called back pretty quickly once I trekked over there. My second favorite German doctor placed the line and I was back at the myeloma clinic before 3:30. Maybe there was at least some hope I would make it to pick up my Dad at the airport at 4:30! I felt bad jumping in front of the others who were waiting to see Dr. B, one of the men recognized me from the blog and said everyone was waiting for an update...so here it is, and now you know why I was called in first!

The appointment with Dr. B was short but sweet. The DWIBS results even finally hit the table when I sat down. My bone marrow is normal, my light chain ratio is normal, and all my lesions are stable...or in other words, complete remission! I had hoped to see my lesions shrinking, but he didn't seem concerned not to see any change yet. The only bad news was that the CRP hadn't actually been run and he wanted to see it going down before he would give me the go to start chemo. He sent me back up to the nurse and she was happy to inform me I wouldn't have to wait for another blood draw, which was a small consolation. She had called the lab and they were able to add it on from what they had drawn earlier. By this time it was after 4, so there wasn't much hope I would hear the result by COB...but at least I wouldn't be too late getting to the airport! I actually got an email that his plane was delayed a little so I was safe on that front. The nurse got all my orders ready and got me an appointment the infusion clinic for 11am today, I would find out once I got there if my CRP was low enough for me to start the chemo. I went to pick up my dex then headed to the airport!

My dad and I went out to dinner then picked up a few things at the grocery store. I knew he had been craving his new favorite (chicken fried prime rib) from the Red Door, so we headed there and we weren't disappointed. :) YUM!

This morning we headed to the clinic for 11. I had them let me back to ask for my CRP result right away so I would know if it was ok to take my first dose of dex. They recommend you take the dex in the morning because it's a steroid and it makes most people hyper. I was happy to find out my CRP had been 10 yesterday so I was good to get started! It might seem odd to hear I was excited to get started, but the sooner I start the sooner I'm done and any delay means I have to stay here longer! So down the hatch went the first dose of dex, and they called me back soon after. My nurse drew my labs, gave me my velcade infusion, anti nausea meds, and Lovenox shot then hooked the chemo to my line. I'll take my first dose of thalidomide tonight and so it's on like donkey kong!


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Monday, July 18, 2011

Taking my new immune system for a spin

Well I knew it would only be a matter of time before some nasty germs caught up with me, but I was still hoping I could escape getting anything until after my last course of treatment!

I woke up this morning and my throat was on FIRE.  I also have a little nasal congestion but my glands don't seem swollen and I don' have a fever, so that's good news.   I'm just laying low and keeping an eye on it for today.  I took some ibuprofen and my throat feels much better now.  I have to go for labs tomorrow and I already have an appointment to see the nurse practitioner so I'll have her check me out.  

Let's just hope whatever it is clears out before next week, since I'm supposed to be heading back to Arkansas to start consolidation!

Friday, July 8, 2011

It's great being home but it's hard having limits...

It's almost two weeks now that I've been home after the second transplant. The recovery continues but I feel like I'm doing well considering what my body just went through. Last week I tried to rest as much as possible by mostly staying in bed during the day and I needed it. I had pretty much the same issues I had after the first transplant...heart palpitations, trouble regulating my blood pressure, trouble staying hydrated, headaches, dry eyes, etc. In some ways it's been harder this time with the heat of summer. I have felt much worse going in and out between the sweltering heat and the air conditioning. Saturday evening I felt terrible after we went out to run some errands. I thought if we didn't take the kids with us I would be fine, but I still overdid it. I drank a ton once I started feeling bad thinking I was just dehydrated, but I think my body was having trouble regulating my core temperature. I felt freezing cold but had a slightly elevated body temperature. At first I was afraid I was getting sick, but my body temp came down after a couple of hours and I never had any other symptoms.

It's hard having limits!!!

I took it easier the next couple of days and we still managed to do some fun things with the kids for the holiday (including hitting the local fireworks display) so that was nice. This week, I'm overall feeling better than last week, but I'm still tired and don't have much stamina.
I was kind of surprised that all my hair fell out again, just after it started to grow in. I didn't lose more from the first transplant after losing about 80-90% after the induction course of chemo. This time it's more like 99% of the hair on my head. My bottom eyelashes are going again too, but so far my eyebrows are holding on. I hope they continue to hold on!

I am very thankful that I've tolerated the treatment so well. At first I almost felt guilty for doing so well through the transplants, while other patients struggled a little more. A friend responded to that thought by saying I shouldn't feel guilty because my experience coming through with minimal side effects gives other people hope. I thought that was a great perspective.

Now I think I need a bumper sticker or T-shirt that says "I survived two stem cell transplants". ;)

So now I'm just looking forward to getting this last long trip back to Little Rock over with so we can get back to our life. It's been hard putting everything on hold these past 6 months, and hard mostly losing our summer and not being able to take any vacations for FUN. In the end though it's these little faces that make it all worth it...


Tuesday, June 28, 2011

Wow, never would have thought...

That the melphalan would so expensive! I just got some itemized bills from the hospital that I requested and the melphalan was nearly 13 THOUSAND dollars a day during the first transplant. I got 50 mg per day for 4 days. That adds up to over 50K just for the melphalan! And everyone says the Velcade and thalidomide are expensive. I'll have to calculate the cost per mg for each and see what comes out on top. Crazy!

It's great to be home but I have to remind myself to rest and not try to do too much. I don't know how others mom's do it caring for their children during treatment. People always ask if it's hard to be away from them, and of course it is, but I also know it is good to be away so I can focus on resting and not feel the stesses of daily life pulling at me do do more than I should. It's harder for everyone back here when I'm gone, especially Alex holding down the fort by himself...but we all know it's worth it.

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Monday, June 27, 2011

HOME

My labs looked good yesterday (except slightly elevated phosphorous), so I was approved to leave. Our flight was late so we didn't get home until after midnight. The kids stayed put last night so I got a quiet morning to sleep in in my own bed. HEAVEN! Trying to get packed up and flying took a lot out of me so I'm tired today, but very glad to be home. I'm trying to rest up before we go pick up the kids later...can't wait to see them!

Sending positive thoughts to everyone down the infusion center this week!

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Saturday, June 25, 2011

I might have kept the line...

Had I known it would take the nurse 3 attempts to place an IV today in the clinic! They wanted to give me fluids since my heart rate was up and she had a hell of a time getting the IV in. She called someone else in after the first two attempts failed and thankfully she finally got it in my wrist.

As for my counts, my white count is still about 7, my hemoglobin creeped up a tiny bit, and platelets were up from 67 to 69. All this indicates I am indeed making new white cells, red cells, and platelets. My CRP (the inflammation marker) was normal too, so overall it's good news and hopefully what they are looking for to let me fly home tomorrow!

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Friday, June 24, 2011

(almost) Discharged!

It was a race today for discharge. The APN told me yesterday I would be good to go for today, but I needed to get labs checked and have my line removed before my appointment with Dr. B at 3. I knew I needed platelets too since you have to be over 50 to get the line removed and I was only 22 yesterday (<20 is normally when you get them). This is why it was a race, because they have to order them from the blood bank once you arrive, the infusion takes 20 minutes, then they have to recheck your platelet count afterwards. My appointment was set for 11 to start all this and they wouldn't move it earlier because they were booked solid. Then of course the blood bank was slammed and they were "out" of platelets...meaning they didn't have any that were logged in, so we had to wait 45 minutes for them to catch up logging in the new inventory. Things went pretty smoothly after that though and I ended up heading to get the line out around 2. No one was waiting and they took me right away, so we ended up at the Myeloma Clinic at 2:45...perfect timing, right? Wrong. They were so backed up and we waited FOREVER. We got a room pretty fast though, but when the nurse came in she seemed very skeptical that Dr. B would discharge me. Wait, what? She said my platelets had been too low and weren't "self sustained". Um, okay...CRAP. I was like, "but I haven't needed platelets in 5 days, other than for the line removal, and my number increased from yesterday to today". She kind of shrugged and said it could go either way, but the boss would decide. Boo. I looked up my labs from discharge after transplant 1, and my platelets were 27 that day and had actually fallen over the previous 3 days when I had been a blood transfusion....that didn't seem like "self sustained" either! Hmph. Today before my platelet infusion I had been at 24, up from yesterday, so it seemed I was in better shape this time around to go! But, alas, I'm not the boss, so we waited, and waited, and waited, and waited...then finally at 5:30 it was our turn. Dr. B said he would feel better if I stayed until Monday to check my platelets and CRP. Gah! I said we were disappointed we would have to change our Sunday flights, but that he was the boss. Thankfully he then offered a compromise and said he wanted me to get labs Sat and Sun, and if everything looked good the APN could let us go Sunday, so for now we are keeping our Sunday evening flights. YAY! So fingers crossed everything holds up for the next two days. I'm due to come back in about 4 weeks for consolidation, which will be the last long stay before I move on to maintenance!

The only good part about all the waiting was all the people we talked to in the clinic...so many nice people! Another person recognized me from the blog too, I'm glad so many people are finding it and reading! We also got to see the first patient who was given the experimental enhanced natural killer cell transplant. He was released from inpatient yesterday and so far things are looking good, only time will tell how it turns out but it's very exciting. They are lining up more patients to do it too. Sadly I also finally saw a patient who was younger than me in the waiting room, he looked like he was in his late teens. At first I thought he must just be someone's son, but then the nurse came out and went over his testing schedule. I really hope he kicks some myeloma ass!


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Thursday, June 23, 2011

What a difference 6 months this makes!

It was 6 months ago today when I heard the words "You have myeloma" come out of my doctors mouth. Certainly the most horrible news I had ever heard, and a couple of days before Christmas...not a fun time.

Today all my myeloma markers are normal (indicating complete response), and at Day +10 of my second autologous stem cell transplant and I have already recovered my white cell count to the normal range! 3.29 today! I'm 3/4 of the way to maintenance therapy on a treatment plan I believe in, at an amazing treatment center, with a kick-ass doctor. Things are good and we wouldn't be here without the all our amazing friends and family!

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Wednesday, June 22, 2011

Day +9

Another uneventful trip to the clinic today. They gave me some IV fluids same as every day and did the, but I didn't need any electrolytes or blood products. My white count is up to 0.76, so still another day or two for sure. My hemoglobin also went up a teeny bit for the first time which is good news, a sign I'm making new red blood cells too. I'll need platelets again before discharge in order to get my line out, but for today I was ok. My fill-in APN, Tammy, checked in today and told me how great I'm doing. Always nice to hear it from the professionals!

Alex flew in this afternoon, so we have another changing of the guard. My Dad had been here since the beginning then my good friend Bethanie flew in from New York on Saturday to relieve him. We've known each other since college, which never seems like a long time ago in my head but when I do the math I have to face the reality! We decided it's been almost five years since we have actually seen each other. She's the kind of friend where it seems like no time has passed at all though and it's been great to spend some time with her. We used to be roomies and its kind of been like old times being able to just relax hang out...well, old times minus a lot of beer and plus a lot of bloodwork and hand sanitizer. So thank you Bethanie, I'm lucky to have you as a friend!

I'm also lucky to have the friends I met here in Little Rock, I've talked about M & J before. J started the lite arm just around the same time I did, so we've been treatment buddies. He took a bit longer break though and is starting his second transplant tomorrow. They had me over for dinner when I first came back in town, and M brought dinner over last night for me and Bethanie...grilled chicken, orzo pasta salad, garlic bread, and key lime bars with fresh whipped cream! YUM! So thoughtful and kind. I can't thank them enough the warmth and kindness they have shown me over the past few months. Bethanie only met M for 5 minutes when she dropped dinner off, but when she left Bethanie turned to me and said "I love her!".

So hopefully just a few more days and we'll be flying home. I can't wait to see the kids and be back in my own house. I also can't wait to get the stupid line out so I can take a real shower, I'm sick of donning press-n-seal and not being able to wash my head!

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Tuesday, June 21, 2011

Day +8

My white count is up to 0.14!

It was a quick trip to the infusion clinic today, seemed like the bloodwork came back really quickly. I didn't need any platelets or electrolyte supplements so we were on our way in a snap. I do have a big lump where I got my growth factor shot though. It's firm and hurts a little bit. I'm thinking maybe it's a hematoma, I called the nurses station and they didn't seem concerned and suggested using ice. Hopefully it will go down by tomorrow, but at least they can have a look at it if it doesn't.

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Monday, June 20, 2011

Looks like things are on the up

Had a very very very small uptick in my white count today. From 0.02 to 0.04, but an increase all the same. Let's hope it continues tomorrow, because honestly it's terrifying not having a functioning immune system. Every time I hear someone cough or sneeze I jump like it's a gunshot.

Still feeling pretty good, tired but at least the nausea is pretty much gone and my appetite is back. I'm still waiting to see what my stomach thinks of the spicy dinner I just ate, black beans and rice with andouille sausage. Maybe not the smartest move, but it smelled so good I had to try it!

I also decided to nerd out and make a graph of my white blood cell counts for the two transplants so here it is:

Sunday, June 19, 2011

Happy Father's Day

To my awesome Dad and fabulous husband! My dad left Little Rock today after holding down the fort with me for the first leg of this transplant. I can't say I was great company, but I can't thank him enough for taking great care of me (as always)! Alex has been holding down the fort with the kids at home for the past two weeks and he definitely deserves a Dad of the year award. I'm a lucky girl to have such great Dads in my life!

It is now transplant day +6, and I'm feeling pretty good. Needed platelets today, but otherwise just chugging along waiting for that uptick.

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Friday, June 17, 2011

Day +4

Still hanging in there. I had been feeling pretty bad the past couple of days, a lot of nausea that we just couldn't get under control. I wasn't really eating or drinking anything because of it so that made me feel even worse. Deena gave me a 24 hour zofran infuser yesterday and I started dissolving the Ativan under my tongue instead of swallowing it and now i'm feeling much better. I've been able to eat pretty well since last night. My blood pressure was really low this morning and my heart rate was jumping pretty high to compensate so Deena sent me home with an infusion pump of fluids. I hate carrying the bag, but it's better than risking passing put when I get out of bed! My white count is still on the way down, I had an artificial jump the other day when they started the growth factor shots, but now we are back on the down trend waiting to bottom out. I'll have to look back at my decline from last time, maybe I'll get all nerdy and plot it out.

I saw the PA in the clinic today, and he said everything is going well and made another appointment for next Friday...if all goes smoothly it could be a discharge appointment! The mission between now and then is to not catch any little nasties. Fingers and toes crossed!

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Wednesday, June 15, 2011

Today I wish I was home.

To see my beautiful daughter graduate from pre-school! I'll have to settle for watching the video. :( Can't believe my baby will be heading to kindergarten in the fall! If all goes well I should be moving on to maintenance by then.

Today is day +2 and so far things are going well. I dropped a ton of fluid overnight so my BP was low, but fluids helped. My CRP is also up, but I luckily I have no other symptoms of any kind of infection. Deena is going to give me an extra antibiotic just to be safe. I've had a little nausea since yesterday but she's supposed to be giving me some zofran too to help with that. My white count is down under 2 so it's mask time for me. I should get my first growth factor shot today as well.

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Monday, June 13, 2011

Cells are in!

About 4.5 million, just one little bag.  Just need to stick around for monitoring for a couple of hours then I'm free to go stink up the house!

Sunday, June 12, 2011

Last 10 dex pills, down the hatch

You would think they could make the pills a little higher dosage so I didn't have to take 10 at a time!  Oh well.  I just have one more dose of thalidomide tonight and that's it for the pre-transplant chemotherapy.

Transplant is scheduled for 9:30 am tomorrow!  Can't wait to smell like created corn again.  Blech!

Yesterday and today I'm feeling a bit more tired, and my taste buds are starting to go...but otherwise feeling good. Not looking forward to dropping the fluid I'm retaining from the dex over the next couple of days, but I'm determined to drink more this time around so my blood pressure won't get so low. 

Friday, June 10, 2011

Oops also forgot to mention

The lovely new friend I made yesterday! Linda from Michigan had left a message way back when Phil Brabbs posted my Myeloma Mondays entry on his awesome Myeloma for Dummies blog.

http://mmfordummies.blogspot.com/2011/03/myeloma-mondays-39-jody-from-baltimore.html

She just happened to read the recent posts on my blog and realized we were both in Arkansas at the same time! She also realized she had crossed my path in the Bone Marrow Procedure waiting room on Tuesday. She came over to the infusion clinic on her way to meet with the doctor yesterday and I'm glad she did! She's on maintenance and was in town for a check-up. She got all good news from the visit and is still in a complete response 7 years after starting treatment! Keep dominating Linda!

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So far so good

Day 2 of melphalan, Day -3 for transplant 2.

Yesterday morning we had a little excitement. We walked out to the car and found someone had taken the liberty to rummage around in it overnight. I had been so good about locking it too. Luckily there was nothing valuable in there so we cleaned up an headed to the clinic. I did call the police when we got back so they could record it. He said they had arrested someone nearby overnight on what the suspected was a stolen scooter.

The excitement didn't end when we got to the infusion clinic. A few minutes after we sat down one of the nurses came running out and grabbed the defibrillation paddles and ran down into to a staff-only hallway where I didn't think any patient care was located. Within a few minutes other nurses came running out then cavalry came running in from the hospital, and eventually someone brought a stretcher. We were all a little bewildered in the waiting room, but we didn't have a good view of what was going on. I asked my nurse once we got back into the clinic, and she said all she knew was a staff member had gotten hurt. Never a dull moment!

The melphlan was pretty uneventful, we were out of the clinic by about 1 or so. We hit up a place called the Buffalo Grill for lunch, need to get as many solid meals in as possible before my taste buds go and the queasiness sets in. We both went for cheeseburgers and we weren't disappointed!

This morning I was a little sleepy. I definitely don't seem to get the "up" most people get from the dex. The clinic was pretty standard, a little bit of a wait to get back but we were out again today by about 1-ish. All my labs looked good and Deena (my APN, or head honcho nurse overseeing the transplant) stopped by. I love Deena!

Today we hit up the the Whole Hog Cafe for lunch, a BBQ place recommended to me by fellow MIRT patient Nick of Nick's Myeloma Blog. Again we were not disappointed. We both went for brisket, and we had our choice of 6 sauces on the table. The potato salad was fabulous!! So now some rest and I'm sure the hockey game will be on in here later!

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Wednesday, June 8, 2011

Gearing up for transplant 2

Somehow I always manage to forget that a 10:30 myeloma clinic appointment is sure to keep you tied up for a good 2 hours or more. I saw my line placement was scheduled for 12 and actually wondered what I would do in between. It must be the chemo brain. I didn't make it to line placement until about 1, and I still had to go back to the clinic afterwards to get my prescription refills and a copy of my biopsy report (since it hadn't posted yet). The PA also sent me for another blood draw today since for some reason my temp was 100.2 in the clinic. This gave me a minor heart attack. He wanted to be sure my CRP wasn't up, possibly signaling an infection. Luckily it was fine and they see no reason why I can't go forward tomorrow...thank goodness! I don't know what the low grade fever was all about, hope that doesn't happen again.

The line placement was pretty quick and mostly painless. I'm not looking forward to not being able to take a proper shower (especially in this heat) and I hate the itching from the adhesive on the covering, but otherwise the line is not so bad. It does feel a little odd when they insert it, I swear I could feel the end of it poking something inside my chest when he was manipulating it. The usual tech Sheila wasn't there, but it was the German doctor again. I was a bit surprised he actually remembered me, but a bit disappointed there was no talk of strudel during the procedure this time. Mmmmmm strudel.

After all that was done I went to pick up my Dad at the airport. We hit the grocery store for a few things then grabbed dinner at The Red Door. This is the same place my mom and I went for breakfast on the last trip, and the dinner was just as fabulous as the breakfast. We both had chicken fried prime rib. If you've never had a chicken fried steak with white gravy, please do yourself a favor and do not wait any longer. YUM!

My dad was very pleased the hockey game was on down here and we watched the Bruins kick some Canuck butt. Now it's time to rest up for tomorrow when I get the pleasure of being methodically poisoned...again. A fellow patient was telling me his 2nd transplant was easier than his first. I'm hoping in the least that it won't be any harder!

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Here it is in black and white!

The results of my biopsy that is. No trace of myeloma!  My blood markers (free light chain) are also in the normal range, so this means I fit the criteria for having achieved a complete response!!  The PA I saw today confirmed this, but said they wouldn't officially call it a complete response until I had finished treatment. 

Tuesday, June 7, 2011

I'm famous!

I was sitting in the myeloma clinic this morning waiting for the script for my fentanyl lollipop (more on this later), when a woman approached me and asked if I was Jody. She said she had just come across my blog the other day and recognized me! I think she said her name was Cheryl and her husband was recovering from a transplant. They are from New York State and were hoping to be discharged soon, she said they had been here quite a while and they were anxious to get home to meet their new grandson. I'm glad she enjoyed the blog and I wish her and her husband well! I hope we cross paths again. I also got to talk to a few of the "new recruits" since Tuesday is usually the day the new patients start their evaluations. They all seemed quite overwhelmed, hopefully they all settled in and found their way around.

Other than that the start to the day was actually a bit annoying. I was scheduled for a bone marrow biopsy at 7:45 and as soon as I parked I realized they had forgotten to give me the script for the fentanyl lollipop. I went over to the myeloma clinic to try to get a script and of course it was just my luck that everyone who could sign the script was in a "Tuesday morning meeting". So I had to wait and have them reschedule the bone marrow biopsy. I was worried at first that it would mess up my schedule since they need the results at my doctor's appointment tomorrow and the scheduler was telling me they were booked solid for the day. Luckily they were able to find a way to squeeze me in at 10:45. The biopsy itself was fine, I barely felt it at all (unlike last time). I hope I get this tech again, she was great.

Afterwards I returned home to try to get some work done and spent an hour and a half on the phone with the Help Desk at work trying to figure out why my computer won't connect to their network and we never did come to a resolution. I had to be 'escalated' to someone who maybe knows what they are doing. Fun times!

But in a little while I'm off for dinner at J & M's place. J is taking a longer break before his next transplant so I won't see them in the clinic this time around. It will be nice to catch up, and It will be my first trip to North Little Rock!


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Monday, June 6, 2011

Time to get started with the second transplant

I flew in to Little Rock yesterday afternoon...and yes, it's HOT! At least we had a little preview of upper 90's in Baltimore over Memorial Day Weekend to get me ready.

Today was a full day of restaging tests. It started bright and early with bloodwork, then I had an EKG, a lung function test, a cardiac echo, and a PET scan. It finished off with two MRIs this evening. Luckily I got a little break after the PET to get something to eat, you have to fast before the PET so I was starving and in need of some caffeine. The MRIs were grueling though, a total of over 3 hours in the scanner between the two on top of the 40 minutes I spent in the PET scanner earlier. At least they scheduled the scans before the bone marrow biopsy, it's really hard to lay in the scanner when you are sore from the biopsy!

Tomorrow morning is the biopsy, then I'm supposed to have a vertebroplasty on my vertebra that is at risk for compression fracture. I might have to reschedule that though because when I just looked over the paperwork they gave me today I found out they require you to bring someone with you to drive you home. I guess they must do conscious sedation.

Wednesday I will meet with the PA to review the restaging results then get my central line placed. My dad flies in that afternoon. I get started with the melphalan on Thursday morning and the transplant will happen Monday!

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Thursday, June 2, 2011

Forgot about the other thing we tackled this month...

Potty training! The super stubborn boy is officially out of diapers! Bye-bye diapers, it's been nice knowing ya!

Now I have to give his oh-so-patient teachers pretty much all of the credit because they really did all the hard work over the past couple of months. He had been staying mostly dry at school in pull-ups for a while now, but with all the craziness we just weren't ready to tackle getting him fully there. And of course whenever we did try getting him in a better routine of going at home, it would always backfire with tantrums and drama. He knew he could get away with it and we weren't ready to break it with all the traveling and routine changes over the past few months.

Finally his oh-so-patient teachers said they thought he was ready to go to underwear so we went cold-turkey. It's been really successful and he's been doing great. The only small problem is he refuses to go number 2 on the potty at home. We've tried bribing with everything we can think of, but no luck yet. I might beg his teachers to come home with us to see if they can convince him. Either that or I'm going to make Alex install one of those tiny toilets like they have at the school in our bathroom!

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In the news...

Haven't read the primary research article yet, but this news report popped up on Myeloma Beacon the other day.

http://www.myelomabeacon.com/news/2011/05/31/complete-response-after-stem-cell-transplantation-for-multiple-myeloma-indicates-best-prognosis/#comments

A group in Spain published some long-term follow up data on a cohort of patients who received an autologous transplant between 1989 and 1998. Their findings show that patients who achieved a "complete response" (i.e. remission) have better outcome and overall survival than those who did not. This has always been suspected, but never really proven because of lack of long term follow up on bug enough populations. Another exciting thing here is the observation of a "plateau" after which a portion of the patients do not relapse or die from the disease. It seems 35% of patients that achieved remission are very likely cured! The cure word has been floating around in myeloma treatment for a while, but for the most part it's just been a whisper. The fact that this data is from patients who received their transplants before the newer more specific drugs were available for front line therapy makes it all the more encouraging. Patients today are waiting for the long term follow-up data to play out with the new drugs added into the mix, and the Total Therapy data things are even better than 35%!

Also in the news, Matt Damon recently announced his father is has multiple myeloma. Always hate to hear of families affected by the disease, but glad Matt is already using his star power to raise awareness. All the best to Kent Damon as he dominates!

http://www.thebostonchannel.com/r/28101533/detail.html


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Sorry for the blog neglect!

I've just been trying to relax, enjoy my time home, and not be consumed by "having cancer"!

I've been feeling really good for the past couple of weeks, but it did take a while for the palpitations and fatigue to go away. Then once those cleared up I developed a rash on my chest, neck, and face. It was SO itchy. The local doctor at first thought it was contact dermatitis but it persisted even after I stopped using pretty much every product I could think of on the areas. I was having lunch with an immunologist coworker one day and she wondered if it could be graft vs. host disease since face rash is a symptom. Graft vs. host disease happens when the transplanted immune cells (graft) mount a response against your bodies cells (host). We wondered if it was even possible with an autologous transplant since the graft is made up of my OWN immune cells and shouldn't recognize my other cells as foreign. A little digging revealed it is indeed possible with an auto transplant, but it's rare. The good news is it's usually not serious, and is easily treated with a course of steroids. It's typically accompanied by fevers and there can also be GI and liver problems, but I wasn't experiencing any of those things. I brought it up with the doctors and nurses here and in Arkansas and everyone agreed it was a possibility and a skin biopsy was the way to diagnose it. I went in to see the NP for the biopsy, but she was very hesitant to do it since the rash was confined to my face, neck, and chest. She spoke with the doctor and they agreed the biopsy wasn't necessary considering my lack of other symptoms. Basically even it is graft vs. host, it's mild and more of a nuisance than anything. So at this point we are just keeping and eye it and I'm using regular old hydrocortisone. It's definitely gotten better, but still kind of hanging around.

I've miraculously managed (knocking furious on wood) not to catch anything sickness wise. This is a miracle because I drop the kids off in the germ factory (aka preschool) everyday. There have been signs up for confirmed cases of conjunctivitis, hand foot and mouth disease, and ring worm. YIKES! So I'm holding my breath that it keeps up another few days since I fly back on Sunday to get started back up with restaging before the second transplant starts Thursday. Just when I was getting used to my new immune system, I have to go back and destroy it. ;) If I get sick it will delay getting started so please everyone keep your fingers crossed I can ward off the germs for another week!

I did manage to get my blood sent back to Arkansas for the myeloma markers and am happy to report everything was great. My light chain numbers are 100% normal!

Since I've been feeling better it's been really nice to be home, just spending time with family and friends. Alex and I celebrated our 6th wedding anniversary on Sunday! Can't believe it's been 6 years, and we are looking forward to the next 6 and FAR beyond!

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Friday, May 6, 2011

Labs all looked good

Went for weekly blood work yesterday and met with the doctor and all my labs looked fine. My electrolytes were all within the normal ranges, and my blood counts were good considering I was 17 days post transplant. I had been a little worried because I had another go around feeling like my heart was pounding Wednesday night. My pulse was only about 105 when I checked it, which is a little high, but it felt as if I had just been out for a run. Palpitations I suppose would be the proper term. It was odd because I had just woken up after having a really vivid intense and not entirely pleasant dream and felt like my heart was pounding. At first I thought it was just a physiological response to the anxiety from the dream, but I got up and took and Ativan and it didn't seem to help with the sensation even over an hour later when I was feeling pretty relaxed. I also find it a little odd that I've been having a lot of very vivid dreams lately, and quite a few bad dreams. A little digging on side effects of medications i'm on revealed nightmares are a side effect of the antibiotic, Levaquin. I had taken it that day only a few hours before bed. It will be interesting to see if the dreams stop since Wednesday was my last prescribed dose. That's all a little beside the point, the real news is the doctor didn't think the palpitations were too concerning. My blood pressure was a little low, but she was pleased that it came up once I drank a powerade. Her recommendation was mostly just to take it easy and do a better job staying hydrated.

I also got a Zometa I infusion and that was pretty uneventful, thankfully. Last time I got one I felt like I got hit by a train the next day. Zometa is essentially the same thing as Reclast, one of the drugs used to treat osteoporosis. It's just a different dose that is more favorable for treating bone damage from myeloma or bone metastases from other cancers.

I'm also trying to figure out how to arrange to send serum back to Arkansas for the biweekly tests they want done there. They gave me a mail-in lab order form and provided all the materials and instructions for me to ship it back, but the doc here said the lab at the cancer center is not set up to centrifuge the tubes as they requested (which I actually find a little hard to believe). My phone nurse told me to try Labcorp since they have worked with them in the past. I called the local Labcorp and told me they won't centrifuge the serum unless they are going to run the tests and that they don't ever release vials to the patient. So waiting to hear back what to do, but I'm definitely slightly annoying by the whole thing. Very frustrating.

In better news, I had the pleasure of enjoying "Muffins with Mom" to celebrate mother's day at the school yesterday morning. We also got their latest school pictures back yesterday. They turned out pretty well. This is twice they've had them done at this school and both times they have amazingly managed to get 3 or 4 really good pictures of the two of them together...I don't think I have EVER been able to even get 1! They also took pictures of Olivia in a cap an gown for graduation....so so cute! I'll post some once I get the cd back with the picture files.

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Wednesday, May 4, 2011

Great to be home!

Flew in Sunday and it feels so good to be home! The kids are excited to have me back. Olivia keeps telling me she loves me, and when we first came in the house Oden sat quietly on my lap for almost a half an hour...and he never sits still!

I'm feeling pretty good, but still get tired very easily. I do miss the security of having my vitals monitored and my labs drawn every day though. I think my electrolytes have been out of whack a little. Monday evening my heart was racing and I hardly slept at all that night. My leg muscles were aching a little too and that and the fast heart rate are both signs of low potassium. It's not too surprising since it had been low last week and I hadn't been so good about taking the supplements for a couple of days. So I restarted those and contacted my local doctor who suggested getting some Pedialyte and trying to up my fluid intake. I'm feeling much better today and tomorrow I go in for labs and to talk to the local doctor. My original Hopkins doctor is helping out with my local care. I wasn't sure if she would since I ditched her for Arkansas, but she agreed so it makes things a little easier...although it might be a little awkward! I really didn't want to have to search for a new doctor though so it's best.

I'm still trying to work out the schedule for the second transplant. I was hoping to go back the first week of June, but they are trying to tell me the 15th because of "the doctor's erratic schedule". We want to move forward as fast as possible since we still have to pay for the rental even when we aren't there. Also, after 90 days on disability my pay is reduced so it will be more of a hardship. Plus I want to be finished up with the intensive portion of treatment that requires me to be down there for weeks at a time before Olivia starts kindergarten in the end of August.

OMG, my baby is starting KINDERGARTEN! We had registration on Monday, so strange to walk into the elementary school! They told us they have 5 kindergarten classes this year. I hope at least a few of the kids she knows from her pre-K class end up in the same class.

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Friday, April 29, 2011

Looooong day, but I'm free to go!

Wow, what a long day. It started fabulously with a celebratory breakfast at a local restaurant called the Red Door...croissant French toast topped with caramelized bananas. YUM! My mom and I had seen this place featured on a local morning news show last time we were here, we were sitting in the clinic waiting room with our mouths watering watching them make this fabulous looking French toast on TV. Unfortunately it didn't work out for us to make there last time since they weren't open for breakfast on Saturday (they were doing a trial only on weekdays). So this time we made sure we could get there on a weekday. It was so worth it, even though it meant getting up pretty early.

Then we headed to the clinic for the labs and waited anxiously for the numbers that would determine my fate. The main thing was that I needed my white count to be 2.0 or higher, and I was 3.15! That and all my other numbers were good enough to qualify me for discharge. Woot! I just would need some platelets in order to get the central line removed. After this it was a lot of dashing around trying to coordinate fitting everything in by the end of the day. I met with Dr. B briefly and he suggested I should be a poster child for telling other patients that it's really not so bad! Ha! He was pleased with how fast I recovered and with minimal side effects. He also said that my light chain is now in the normal range which means ALL my myeloma markers are in normal ranges!! He stopped short of calling it a complete response (the myeloma version of remission), and I suspect this may be because he wants to see this maintained until my next re-staging. In the end I managed to get all my discharge instructions, get the platelet infusion, and have the line removed. Whew, hectic Friday for sure!

I met another young patient in the clinic who is from Manassas, VA and works in Maryland. He was also recently diagnosed and made his way to Arkanasas. I got called in to see the doctor right after we started chatting, but I gave him my card so hopefully he'll contact me. There really are people here from all over, just today we met Michigan, Ohio, Kentucky, California, Virginia, and Germany.

So now I get to head home and I'm very excited! I'll get a longer break this time to allow full recovery before the second transplant. Despite the fact that I'm being discharged, my body still needs time to recover from the stress of being poisoned before I can safely be poisoned again. They want me back in 4 weeks for the second transplant.

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Thursday, April 28, 2011

Wow, now I might actually get discharged TOMORROW!

My APN called and said she was able to get me a discharge appointment tomorrow, so if my numbers look good from my morning labs I'll get my line out and the clinic will officially discharge me! I wouldn't fly out for another couple of days anyway, but I'm wondering if this is some sort of record...discharge on transplant day 11!

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Transplant day 10...

White count up to 1.16! Almost there! Feeling better every day. I will probably be set to be discharged by Monday. I need to try to schedule that vertebroplasty too, then hopefully I can be home midweek next week.

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Wednesday, April 27, 2011

The blip was real, and today we had jump!

White cell count was 0.26 today, up from 0.08 yesterday! I still need to get up to 2.0 or higher, but now we are well on the way. At this rate I should be ready to be discharged early next week. I'll probably stick around a few extra days to get the vertebroplasty done so I cam breathe easier about my risk of a compression fracture once I'm with the kids.

Still on a mission not to get sick between now and getting up into the safe zone. Thankfully flu season is officially over here so they decided to pull everyone off Tamiflu. That's at least one less pill to take everyday, and $25 extra dollars in my pocket every 10 days.

Other than that just resting as much as much as possible. Although I have to say my mom is the one that is napping right now! It's hard work being a caretaker too, especially with added stress of all the tornado warnings over the past few days. Us northerners aren't used to those darn sirens! Luckily the sun actually came out for a little while today, we needed that after the span of gray stormy days.

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Tuesday, April 26, 2011

A little blip in the right direction!

My white count was up from 0.04 to 0.08 today. I little blip, but definitely in the right direction! I might need some whole blood tomorrow since my red cells were getting low today, but she said we would see how things look tomorrow. Feeling pretty good, but very tired today. Hopefully it's because my new bone marrow cells are hard at work growing and trying to make new cells. I even had to take two naps!

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Monday, April 25, 2011

A big shout out to my brother

And sister-in-law for the package they send today. Lots of goodies, some comfy jammies, and a couple of books. The highly anticipated (by me anyway) next book in the Kingkiller Chronicle, and the first book in the Game of Thrones series so I can get started on that before watching the show. Thanks Jason and Karen! xoxoxoxo

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Transplant day 7

I woke up this morning feeling better than I had in quite a few days, so I'm taking this as a good sign. Last Monday at this time I was dog tired and reeking of creamed corn. Today I'm feeling pretty decent, still tired...but more energy than yesterday and a better appetite too. In fact, I have a date with a home made apple pie as soon as I finish my ham sandwich!

My white cell count was steady at yesterday's 0.04, although after seeing how I was feeling the nurse wagered a speculation that I may have bottomed out after yesterday's lab then started the upswing by this morning. Pretty much just a wild guess, and we'll have to wait until tomorrow to see if I'm really on the up and up.

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Sunday, April 24, 2011

Happy Easter from Little Rock!

Had a nice wake up call from the kids excited to tell me all about what the Easter bunny had brought!

After that it was off to the clinic for the daily drill. My white count was 0.04 today, so about the same as yesterday. My platelets were really low today though so they needed to give me some, which means things took a little longer than usual. They also sent me home with a potassium infuser since my potassium was a little low too. My appetite was a little better today, I think the lorazepam they recommended taking (on top of the zofran) is helping a bit. I even managed to eat some of the Easter dinner my my whipped up. The ham was delicious. I think the apple pie might have to wait until tomorrow though since I ate a few to many jelly beans from my Easter basket!

Saturday, April 23, 2011

Another changing of the guard

My mom flew in yesterday afternoon and Alex flew back home this morning so he can spend Easter with the kids. I'm sure they are over the moon to see him, and with the Easter bunny coming it's sure to be an exhausting couple of days settling back in!

Things are going fine here in transplant world. I'm just about bottomed out on my counts. My white cell count is 0.05 as of today. Hopefully I'll start to rebound within a couple of days, they say not likely before day 8 so that's still a few of days out. I'm mostly just feeling tired. I've been a little queasy over the past few days and haven't had much of an appetite, but overall not doing so bad. They've been giving me anti nausea meds which seem to be doing ok keeping things in check. They did admit to me today that the younger female patients tend to have the most nausea...I guess it's just as well they didn't mention it before! The trick now is to avoid getting sick between now and when my counts rebound!

We ran into another couple I remembered from my last trip today. They are an older couple from Lexington Kentucky. Seems things weren't going so smoothly since they arrived in town...insurance problems that derailed a vertebroplasty for him, A/C out at their rental, a dog back home that ate their grandson's Easter gifts, etc. Hopefully they get back on track for them quickly, because there is nothing worse than extra bullshit in the midst of all of this. I also learned that he's on the TT6 protocol. Now for those not in the know this wouldn't mean much of anything, but for patients down here we quickly get to know the numbers and the meaning behind them. There are two groups of myeloma patients here in Arkansas and we are segregated by the gene expression profiling test...low risk, and high risk. High risk patients respond more poorly to treatment, relapse faster, and just generally have a poorer prognosis. There are different protocols for the two groups and this is where the numbers come in. TT4 is for low risk patients, and TT5 and TT6 are for high risk patients. So just by hearing my fellow patient is in TT6 I know that he is one of the high risk patients. It always makes me sad to hear it, and I can't help thinking they are the "unlucky" ones. Then I think how odd it is to think that because we are all unlucky ones in this game...but the high risk patients face an even tougher road for sure.

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Thursday, April 21, 2011

The kindness of others...

This has been a humbling journey in so many ways, and one of those ways has been in experiencing the amazing kindness of others!

We've met some wonderful people here in Little Rock, people from near and far who are on the same journey.

I mentioned J & M in a previous post. They are local couple, and J started his treatment on TT4 Lite just about the same time I did. We became friendly passing by in the clinic during induction. We exchanged numbers last week and have been keeping in touch. He is doing re-staging this week will start his first transplant next week. They decided to push back a week so they can enjoy Easter with their family.

Yesterday his wife M brought us a home cooked meal...chicken noodle soup for me and pizza for Alex. She dropped it off in the middle of a thunderstorm while J was at the medical center having his MRI's done. The food was fabulous and we were just blown away by the thoughtfulness and kindness of the act. I mean they are riding this same roller coaster, but still took the time to think of us and brighten our day. So thank you J & M, we feel so lucky to have crossed your path!

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Wednesday, April 20, 2011

Excitement of the weather kind...

We had some pretty strong storms move through last night. The tornado sirens must have gone off 4 or 5 times overnight. We didn't see much damage after this round though, the ones that moved through last Thursday brought down a lot of big trees in the area.

Feeling a little better today, I finally dropped the 5 pounds I gained from the dex so hopefully my blood pressure will stabilize. Getting some more fluids in the clinic right now, but I felt less lightheaded this morning. I had a little nausea last night for the first time this round, I'm waiting for my APN to come by to see if she recommends I take something. The chemo fog seems to have cleared a bit so I'm feeling a little more with it, like I can finally start taking turns in my Words with Friends games and spelling something more profound than Dog. I did somehow manage to score my all time one word high score on the morning of the transplant...111 points!

Missing the munchkins today, seems like I've been here a long time already. I need fast forward button!

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Tuesday, April 19, 2011

Sorry for the suspense!

The transplant itself was indeed pretty anticlimactic! I was totally zonked between the low blood pressure and the benadryl. The cells did indeed arrive in a little cooler and without much fanfare my APN hooked them up to my line and started the infusion. I think she said it was about 4 million cells in the one bag and I've still got 7 other bags frozen down. It took all of about 20 minutes then they kept an eye on me for a couple of hours afterwards. Other than a weird taste in my mouth as they were infusing it was completely unremarkable. Let's just hope the little buggers are finding their way to the right spot!

I was still really zonked once we got home and the verdict was that I smelled like creamed corn "only worse", so I banished myself to the bedroom with a fan and an open window. I couldn't smell it, but judging by the way Alex was wrinkling up his nose, I'd say it's a good thing it subsided pretty quickly.

This morning my blood pressure was low and I was feeling pretty dizzy again, so now I'm on a mission to drink more today so I'll feel better in the morning. Otherwise things are looking fine, my counts haven't started to drop yet...but they should over the next couple of days.

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Monday, April 18, 2011

Waiting for the precious cargo...

To arrive. I'm hoping they really come in a little cooler. We had a long wait I'm the waiting room, I guess everyone wanted to be here bright and early on Monday.

My blood pressure is a little low today coming off the dex. I'm a bit lightheaded, dizzy, and short of breath. I'm getting fluids right now, so hopefully that will help...I know it did last time. I might have to go home with an infusion pump for fluids. I'm not super happy about being tethered to that thing again, but it's better than taking any chances.

My APN was just here explaining the process and they have me some prophylactic benedryl in case I have some sort of reaction. So now I'm getting a little sleepy...hopefully I can stay awake for the excitement!

Sunday, April 17, 2011

T-minus 1 day!

Transplant Is officially scheduled for 10:30 am tomorrow! I went in for my last doses of melphalan and velcade this morning and also took my last dose of dex this morning (not last forever, but last doses before transplant). I just have to take my thalidomide tonight, then tomorrow they will infuse the stem cells. I've been thoroughly warned it's going to be completely anticlimactic, and that I'll the pleasure of smelling like either garlic or creamed corn (depending on who you ask) for a couple of days due to the preservative they use to store the cells. This preservative is called DMSO, and it's used to help prevent ice crystals from popping the cells as they are frozen then thawed out. I've used it a million times in the lab to freeze down cell lines myself, never on any cells quite so important as these though! We need these cells to be as healthy and happy possible when they thaw them out because once the melphalan finishes doing it's job the stem cells are going to regrow all my blood cells. I also have to say DMSO itself has no odor, so it must be a metabolite that gives the odor...might have to so some detective work on that one!

I'm definitely more tired today, and I needed a little nap after the trip to the clinic. Now it's time for lunch and then a few errands. My appetite is still pretty good, but my taste buds are taking a little beating so some things are tasting a little off. I'll be glad to be off the dex so I can start eating more sugar, the pumpkin bread my mom sent is taunting me from the fridge!

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Saturday, April 16, 2011

Day 3 of pre-transplant chemo, still kicking!

The trip to the clinic was pretty uneventful again. Infusion of melphalan, antinausea meds, shot of Lovenox, labs. My labs all look fine and my potassium was back up a little so the dietary intervention is working. They advised me to start wearing a face mask in the clinic waiting room even before my white blood counts drop, so I asked them if they had any smaller sizes since the standard issue size is WAY to big for my little face. I felt like it couldn't possibly be doing much of anything productive last time around. I think it was more a mix of pure luck and diligent hand cleanliness paranoia that saved me from getting sick last time my counts were low. Luckily my nurse was nice enough to go on a hunt and managed to find some that fit a little better, so I'll have a little more protection.

A little more tired today but otherwise feeling good. I slept ok last night too so I guess I'm lucky that the Dex isn't stringing me out to much. Tomorrow is the last day of chemo before the transplant on Monday!

And in other news, I now may have officially lost faith in Rotten Tomatoes. We just watched Let me In, which also got a 90% rating just like Source Code. Being horror fans, we were hopeful this would be a rare gem of the genre with it's 90% on the Tomatometer. Not even close!

A special birthday!

Happy birthday to my dear grandmother, she turned 86 years young yesterday!
She's amazing woman and a proud mother of 5, grandmother of 8, and great-grandmother of 6. Love you Gram!

Friday, April 15, 2011

A word on coconut water.

BLECH!

I think I'm sticking to bananas and potatoes (or even horse pills if necessary) from now on.

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Day 2 of melphalan, so far so good.

Spent a couple of hours at the clinic this morning for the melphalan infusion. Pretty uneventful. I'm retaining a little water from the dex and my heart rate is up a little on exertion, but nothing unusual. My potassium was a little low so I need to up that in my diet then maybe resort to the awful horse pills they gave me last time. I'm going to try coconut water for potassium this time around. She also advised that I cut down on sugar while on the dex since my blood sugar will be high already. Damn, there goes my nightly ice cream feast!

Yesterday we went for a nice walk at the park by the River Market District downtown since it was a beautiful day and I was feeling good. We got some not so great food at a pizza place since we missed lunch hours at the actual Market. Last night went to see Source Code. It was decent, maybe a little thin in some areas, but pretty good overall. I'm not sure if it deserved the 90% fresh rating it got on Rotten Tomatoes, but I enjoyed seeing my movie boyfriend Jake nonetheless.

I also finally had the pleasure of whooping Alex pretty good on Words with Friends. A rematch has just gotten underway, it will be a battle royale for sure. It's on like Donkey Kong!

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Thursday, April 14, 2011

Day one of pre-transplant chemo

I made it to the clinic early for my 9 am appointment today, I think it's the first time I ever made it there early! I was up early partially from nerves and partially from the mockingbird that was singing ALL night. I woke up at 2 am and again 4 am and I could hear him hard at work practicing his repertoire. I guess he's an overachiever!

I'm happy to report the clinic visit was all really pretty uneventful!

I was called back pretty quickly and taken to a private treatment room. They took my vitals and the nurse hooked up a saline IV (extra fluids to help your kidneys process the chemo drugs) and drew blood for labs. She said we would have to wait on the results before ordering the meds. She also told me to wait on taking the dex until the labs were back since I guess there was a small chance they wouldn't have me start all the chemo today based on the results.

Alex and I killed a little time playing Words with Friends. He gets a lot of enjoyment out of almost always kicking my butt...a little too much enjoyment!

Labs came back looking fine and so she ordered all the meds...the chemo drugs (melphalan and velcade) along with two anti nausea meds (Emend and Kytril), and a shot of Lovenox to prevent blood clots from the thalidomide I will take this evening. She gave the ok to take the dex, and brought me some ice chips to suck on while waiting for everything to come from the pharmacy. The ice chips are to help prevent mouth sores that can occur with the melphalan. The thinking is that the coldness restricts the blood vessels to the mucosa and softens then dose of drug delivered there, which in turn can decrease the likelihood of developing and kind of sores. She freely admitted there was no hard evidence it works, but they always have their patients use them. Fine by me!

The APN came in to chat as well. I have to admit I was a little disappointed to find out you don't get the same one each time since I loved the one I had last time, but the one for this round is very nice too. She just went over the basics of what to expect and checked my supportive medication list.

Meds came back pretty quickly and she gave the velcade shot and hooked the melphalan up on the infusion pump. It was just a 20 minute infusion, and before I knew it the pump was beeping that bit had finished. After that she just needed to change the dressing on my central line and then we were free to go for the day, all in all it was under 3 hours.

Now I just need to take the Thalidomide tonight and the rest of my supportive meds, then report back at 9 am tomorrow for more melphalan. In case you were wondering (and I'm sure you weren't!) they recommend taking the dex in the morning since it tends to make you hyper, and then taking the thalidomide at night since it's a sedative so as to give you the best chance of being able to sleep at night. I don't remember really having trouble sleeping last time, but we'll see what this round brings!

We made an exciting trip to the post office to mail our tax returns, then stopped at the grocery store or a couple of things. I think we are going to head up to check out the River Market District downtown for lunch since it's a gorgeous day and I'm feeling pretty good!

Much love to everyone!


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