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.

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.


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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Wednesday, April 13, 2011

Ok now that I'm done complaining, on to other matters!

I got my line placed this morning so I am ready to start the transplant tomorrow.

At first I was a little annoyed when I showed up to line placement and they told me I needed and order and a platelet count. This meant I had to walk over to the Myeloma clinic to get things sorted out, and it's a bit of a hike. Once I got to the clinic I ran into the other fellow patient who had been going through induction at the same time, he and his wife (I'll call them J and M) are really lovely people and live right here in Little Rock. I'd been thinking about them, especially after running into the other gentleman (F) yesterday, so I ended up being glad I had to take the detour to the clinic. J is doing well and will start his transplant either next week or the following week. They are hoping to push back a week to spend Easter with their family. I hope Dr. B agrees to the switch! We chatted for a few minutes and exchanged information, so I'm looking forward to keeping in touch!

You may or may not remember from last time that I was pretty uncomfortable last time after they placed the line, and I'm happy to report it's not as bad this time. I guess the garden hose (er, Quinton) the put in for collection stretched my vein out nicely last time. I had a different set of staff working this time, for the first time the familiar Sheila wasn't there. I did have a nice long discussion with the woman doing the prep about the coverings they use since I had several bad allergic reactions to the different adhesives last time. The only covering that agreed with me was the one they used in the clinic, which I now know is called SorbaView 2000. I learned the hard way with the Quinton placement, that even something that looks similar to the SorbaView does not cut it. My skin blistered something fierce with that one, and you can still see where it was irritated.

The doctor doing the placement was German, and recognized my last name as German. He offered some pronunciation advice, and asked about the origins. I used the excuse of marrying into it, but I guess I need to find out this information since I had essentially the same conversation with Dr. B yesterday! We also all had a nice discussion on baking cookies and apple strudel while he was doing the placement. Never a dull moment!

So tomorrow I start the transplant process. This is essentially 4 days of chemo to destroy my bone marrow, followed by an infusion of my stem cells to regrow my bone marrow. So on days 1-4 I'll get melphalan, velcade, thalidomide, and dexamethasone, then on day 5 they will infuse the stem cells. It's the melphalan (a derivative of mustard gas) that does the most of the dirty work. After that my cell counts will crash over the next 7-10 days, then come back up over the next 7-10 after that.

Sent from my iPad

I am all sorts of annoyed right now. iPad, yes, I am looking in your direction.

Or maybe I should be looking in Google's direction...

I just for the first time tried to create a new blog post from my iPad. I hadn't even remotely begun to consider that there might be a problem using a Google site from my iPad, but lo and behold it is not at all easy to create or edit posts on Blogspot blogs using an iPad. It is impossible to enter new text unless you are in HTML mode, and I certainly don't want to type all my posts in HTML. For anyone who has used Blogger, the problem is that you can't click into the text entry field, only the subject field. So so annoying. A cursory google search brought up lots of discussion on the topic on message boards, and and there seems to be a third party app available that can help. I haven't investigated that further yet, but I hope its true (and cheap). The other solution is to compose and post messages through email, as I am doing now, but it makes adding images more difficult.

But basically, people have been complaining about this for a year and it hasn't been fixed, and there is much conjecture that the reason it hasn't been fixed is competition. If it's true then shame on both of them!

Sent from my iPad

Tuesday, April 12, 2011

Good news from the meeting with the doctor today!

Today I finally met with Dr. B again. I haven't personally seen him since my initial evaluation in early February. I only met with the PA when I was here for induction since Dr. B's schedule was pretty tight and he was ill when I was ready for discharge. I was definitely anxious and excited to meet with him to hear the results of the restaging tests and get his perspective on everything.

I'm not sure how much I've talked about the good doctor before, but I can't count how many people have used the expression "he's quite a character" to describe him. While I absolutely think that's true, I also think it deserves some elaboration. My guess is it's partially due to his choice of attire, and partially due to his personality. As motorcycle enthusiast he often sees patients wearing a black leather motorcycle jacket (today it was accompanied by a turquoise scarf). As far as his personality, although he's a character, I definitely wouldn't characterize him as eccentric. He's very warm and personable, but also a bit edgy (if that makes any sense). He likes to laugh and joke and tell stories and generally just not act like many doctors I've met before. He always gives a hug and kiss on the cheek to greet and it feels more like seeing a family member than a brilliant and highly esteemed doctor. Then once you get down to business and he looks at your chart he flips through the piles of paperwork and summarizes everything succinctly and usually manages to answer most of the questions you meant to ask him before you even get a chance to ask. In short, I think he's great. (I do realize I could be a teeny bit biased!)

Now on to the meeting. Once I arrived at the clinic, they checked me in and took my vitals then the nurse came in to make sure everything was in order with my chart and my scheduling. She told me to restart the supportive medications I had stopped when I was discharged, and she handed me the results of all the restaging tests for my own records. Then they took me down to where Dr. B's office is on the 4th floor. It was a little bit of a wait, as there were a couple of people ahead of me. It went quickly though and within 35 minutes or so I was in his office waiting for him. I got my iPad set up to record the audio of the meeting, and I also had my cell phone out so we could get Alex on the phone from back home.

Some other guy came in and sat down in an extra chair behind the desk. He didn't say anything and was never actually was introduced to me so I don't really know exactly who he was. Dr. B came in a few minutes later and gave me a hug and kiss on the cheek. He commented on the iPad..."Ahhh this is the hot new thing!". I told him I was going to use it to record, and he claimed he doesn't know the first thing about "all that stuff". He told the other guy that he was going to have to get one and teach him how to use it. After that, I dialed Alex and we got started.

He flipped through my chart and concluded "I'm very pleased"...and boy, I'll tell you, this is EXACTLY the thing you want to hear coming from your oncologist!! Then he proceeded to talk through the results and where everything stands. There are several markers we are looking at to track my progress and response to treatment. First is the light chain, which is a measure of the proteins my abnormal plasma cells are making. Plasma cells make antibodies, but my myeloma plasma cells are only making parts of antibodies...called light chains. In most people myeloma cells make lots and lots of full antibodies and these are a little easier to monitor. My myleoma is "hyposecretory, light chain restricted", meaning my myeloma cells make relatively small amounts of only the light chains instead dumping huge amounts of full antibodies. The normal range for light chain in the blood is 0.33-1.94, so the goal is to get back within this range. Before treatment my level was around 19, and now it is down to 3.95! Good progress for sure!

Another thing we are looking at is the bone marrow biopsy results. As myeloma progresses plasma cells tend make up more of the cells in the bone marrow than usual. Healthy bone marrow is comprised of about 5% plasma cells, and >10% is diagnostic for myleoma. It's important to note that this characterization isn't differentiating between normal and abnormal plasma cells. In other words, in a person without myeloma all the plasma cells are normal, but in a person with myeloma you see a mixture of normal plasma cells and cancerous ones. Prior to treatment my bone marrow was 15% plasma cells, and now it's down to "5-10%", so I'm back in the normal range! I'm also still within the Stage I categorization according to the International Staging System (beta-2 microglobulin = 1.6 and albumin = 3.7).

Aside from the light chain and the bone marrow the only other thing we are tracking is the focal bone lesions. The goal is for these to heal up and disappear from the MRI. The latest MRI showed all the lesions are stable....no new ones, and none have gotten bigger, which is good news! At this point this is the expected result, as it takes time for bone to rebuild. We just hope they start to get smaller over the next few months, but according to Dr. B it could take 10-12 months for them to resolve completely

So all in all it's good news...I'm responding well to treatment!! Dr. B was happy with the results and was pleased that I tolerated the induction course with so few side effects. The best part of the meeting was when he was dictating his conclusions, he said "patient has almost achieved a complete response from induction therapy". In myleoma speak a "complete response" essentially means remission. I must have been grinning from ear to ear to hear that I was "almost" there. Now I know that even once I achieve a complete response it will still be important to heal up all the lesions (because things are more likely to restart in the lesion areas), but it's still very encouraging to hear things are going well so far.

I also had the pleasure of running into the husband of one of my fellow patients who was on about the same course as me on the last visit. She was one of the ones who was ready for collection as I was finishing up. He gave me a huge hug (I still smell is cologne on my shirt!) and we chatted for a few minutes about my progress and that of his wife then he had to go run and meet her. I'm looking forward to catching up with them over the next couple of days.

So now we're on for the transplant to begin on Thursday! I get my new central line tomorrow morning, then Alex arrives in the afternoon. My first dose of melphalan is scheduled for 9 am on Thursday.

I'll give a recap tomorrow of how the transplant will go. The unusual thing about doing here is that it's all done outpatient. Most institutions lock you up essentially in isolation while your immune system is knocked. I've already stocked up on hand sanitizer and masks. :)

Saturday, April 9, 2011

Back in Arkansas!

I flew out Thurdsay afternoon after spending the morning visiting my coworkers (and picking up my new laptop and blackberry). I'm out on short-term disability probably until I start maintenance, but I still needed to have my laptop replaced since my old one was going out of warranty. I also had to get a new Blackberry as part of a transition they were doing to use only one service provider. At first I was excited to hear I was getting a new one because I really seriously dislike the one I had, then I started hearing everyone else saying the new ones were even worse. Now that I've been playing around with it for a couple of days I can say I 100% agree that the Torch is worse than the Bold in terms of functionality and user-friendliness. It remains to be seem how the new one will do in terms of signal and dropping calls. Ahhh technology. The bottom line is that I am now officially having new device overload....new (work) Mac laptop, new iPad, new (work) Blackberry, and new-ish Droid phone. It's maddening going between the keyboard formats. I also have to say that while I have been a pretty loyal Apple enthusiast for the past couple of years, I am finding that I *gasp* actually really prefer the functionality of my Droid phone. I only got the Droid because I was due for an upgrade last last year and wasn't ready to give up Verizon. So there, I said it...I love my Droid. I love that the apps are free, and I love having actual menu buttons. I also really hate the iTunes software, but that's another story. :p

Ok ok, enough rambling about technology and back to more important things! The flight was fine and I'm settling in to the new place. It's a big BIG improvement over the last place, so much more comfortable and homey. I spent the evening getting settled in and picking up some groceries. I am here on my own for a couple of days since we are trying to balance caregiver time and minimize the amount of time both of us are away from the kids. I can handle the restaging part on my own, so there really wasn't much need for anyone to come down until the transplant gets under way. For that we agreed Alex should be here for the start, then my mom will rotate in, followed by my Dad. Once we know what to expect through the first one, it will make choosing and lining up caregivers for the second one easier.

It was hard to leave again especially knowing it's for a longer time this time around, but thanks to all the technology I was supposed to stop talking about I've got a new link to the kiddos. For some reason neither of them are much for talking on the phone so during there last trip I only talked to them a couple of times. They are already somewhat experienced in video chatting through Skype with the the scattered relatives, and that was usually more of a success than trying to get them to talk on the phone. The whole video chatting thing just got much easier thanks to my new fancy iPad and the new iPod touch we gave Olivia for her birthday. I set up Face Time on both of them and now she can call me whenever she wants at the touch of a couple of buttons and without needing another adult to wrangle the computer. We talked Thursday evening and it was great!

Yesterday I reported to the clinic at 9am to get started with the re-staging tests. The restaging tests will allow them to judge my response to the induction chemo and assess my general health to determine if I can start transplant. It started with a blood draw (only 11 vials this time). Then I met with a data manager to review some information, and she collected the medication diaries I had been required to keep on the days I was taking the Thalidomide and Dexamethasone (basically I just had to write down the dose and number of pills taken each day and report any side effects). After that I headed over for the bone marrow biopsy. I've had 5 of these already in the past few months. They aren't pleasant, but they aren't unbearable and the Fentanyl lollipops take the edge off...usually. Yesterday I made my tech work for the sample and I'm sorely paying the price today! It started off badly when the first position he chose to bore through the bone turned out to have been a spot that had been used before. He used the normal amount of pressure, but my bone was only partially healed (i.e. weaker) so it unexpectedly went right through...YOWCH! My leg kicked up in reflex and I joked he was lucky I didn't get him in the head as payback. He joked back he has learned how to quickly get out of the way. Once he got through in another spot and got the bone sample it was time for the aspiration. This is typically the painful part, when they do the pull a pain shoots down your leg. I was anticipating the pain and he prompted me when to take a deep breath, then...nothing. The good news was no pain, but the bad news was no sample either. So he then had to poke and bump around to reposition the needle to a spot that would give a sample. So after a few rounds of bumping around and bracing for the pull with no results he finally hit the payload. By the end I wished I had used the whole lollipop instead of only half!! After that it was off to the pulmonary function test and cardiac echo. These aren't part of the restaging, but more related to evaluating my general health (and are an insurance requirement before transplant). I had a break for a couple of hours before having to report back at 6 pm for the MRIs, which is definitely a fun and exciting way to spend a Friday evening!! It took about 2 hours total between two machines. I was a little uncomfortable by the end from laying on my back after the biopsy earlier so it was hard to keep still. I also forgot to take my rings off (they told me I didn't have to but I usually do) and I could feel them vibrating like crazy.

Now it's just a waiting game until Tuesday. Well, actually I take that back, I still have to collect a 24 hour urine sample and bring it in to the lab on Monday morning...it's so much fun saving all your pee in the fridge for 24 hours and lugging it around!! Other than that it's just a waiting game. So I'll be trying to enjoy the warm sunny weather and trying to relax a little and catch up on responding to messages.

I'm very anxious to meet with Dr. B on Tuesday to hear how things are looking. I know my light chain had started to go down after during induction, but I'm wondering how far down it went and whether it has started to rise again. I'm also wondering if the lesions will show any response on the MRIs.

And I'm also really looking forward to Alex flying in on Wednesday!!

Wednesday, April 6, 2011

Saw this story on the Today show this morning...

About a young couple with an 18 month old daughter who are coping with receiving TWO devastating cancer diagnoses within 9 days back in February. Of course I was in tears watching, but I was just in awe of their outlook and positivity. They are truly and inspiration and I wish them the best in their fight!


Tuesday, April 5, 2011

Sorry for the lapse, I know you are all at the edge of your seats waiting for an update!

I'm going to have to blame it at least partly on my new iPad. It was a SERIOUSLY generous gift from my awesome co-workers...thanks awesome co-workers! It's going to be great to have with me in Arkansas so I won't have to lug my computer around, but it's been quite the time-sink this past week getting it set up and figuring out what it can do.

I've been feeling great. I'm pretty much back to my normal self...well, minus a little hair! I love being home. It's nice to have a break from the medical madness and to have time with the family and time to relax. Honestly though it almost feels like a full time job keeping up with paperwork...catching up with bills and insurance claims, submitting things for reimbursement, making sure I'm keeping everything organized, etc.

The kids are definitely excited to have me home. Olivia was a little apprehensive at first, which I think was partially because she fell asleep on the car ride to the airport and partially my head scarf. Once I took it off they both agreed it was pretty funny that I have a "boy haircut". Oden told me I looked like him, and Olivia insisted on drawing a picture of me.

The big excitement of the week was a certain 5 year-old's big birthday bash! It was a Spongebob- themed swim party and she definitely had a blast. She doesn't even really know how to swim yet but she's getting really comfortable and brave in the water, especially seeing all her friends swimming and going under and jumping in. She even decided she would take a leap off the side...I almost had a heart attack from across the pool, but she popped back up (looking a little stunned) and got her feet under her. It seemed like it was about 500 degrees in the pool area, which was tough for all the adults who were dressed for the 45 degree weather outside. Everyone survived though and maybe the pound of water weight loss through sweating helped balance out the piazza and cake. ;p

I also have to give a shout-out to some fabulous friends for helping to pull the party together. It was a huge to have some of the details taken care of, and to have help with setup and cleanup!

Now that it's Tuesday I'm gearing up for the trip back on Thursday. I'm sad to be leaving again, but I'm ready to move forward with the first transplant. A fellow blogger and TT4 participant put me at ease a little bit about what to expect so I'm feeling a little less anxious.

Lastly at the risk of sounding like a broken record, I want to thank everyone again for the love and support. We have the most amazing friends and family and your thoughtfulness and kindness is greatly appreciated! Please know that I appreciate everything even if I don't always have a chance to personally respond to every message. Also thanks to others in myeloma-ville who are finding the blog and commenting or sending messages, please keep 'em coming! A lot of people have been commenting on my positive attitude and sense of humor, and I guess wondering how I'm managing to keep that up. I won't lie and say it's always easy and going forward it may get harder, but I made a commitment to myself and my family not to let this drag me down. It's absolutely the shitty end of the stick, there is no way around that, but last time I checked it's the only stick I've got. I figure I better clean it off and get on with it. Or for another analogy...the cards have been dealt so now we need to play the best hand. This means not spending time feeling sorry for myself and focusing my energy on getting well. So forward we go!