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.

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.

Sent from my iPad

Monday, June 27, 2011


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!

Sent from my iPad

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!

Sent from my iPad

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!

Sent from my iPad

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!

Sent from my iPad

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!

Sent from my iPad

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.

Sent from my iPad

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.

Sent from my iPad

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!

Sent from my iPad

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.

Sent from my iPad

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.


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!

Sent from my iPad

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!

Sent from my iPad

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!

Sent from my iPad

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!

Sent from my iPad

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!

Sent from my iPad

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!

Sent from my iPad

In the news...

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


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!


Sent from my iPad

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!

Sent from my iPad