Happy tranplant anniversary to me!

One year ago I received transplant #2!  Today I am in complete remission and an looking forward to spending a fun filled summer with the family.  A summer that will involve a real vacation to the beach and will not involve traveling to Little Rock!  Don't get me wrong, I love me some Little Rock...but trips there always involves a bone marrow biopsy and the stress of waiting for the results, plus it's HOT there in the summer so I'll be happy not going until the end of September.  :)

It was all good news from my last trip there in the beginning of May.  I tried to post from the bone marrow biopsy waiting room, but since iPad is frustratingly not so Blogger friendly I manged to delete it pretty much immediately.  Then I just just completely flaked on trying to recreate it. 

My main observation in that attempted post was that the bone marrow biopsy waiting room is like myleoma social hour.  Everyone is always so chatty...sharing war stories and such.  I'm convinced it's because all the patients are all hopped up on their pre-meds.  One fentanyl lollipop here, two ativan there.  Makes for a lots of interesting conversation.  :)

Now back to the test results.  I think the worst part of each trip to Arkansas is waiting in the intake room for the nurse to print off all the test results and prepare the chart to send you off to the doctor.  They hand you the printouts that hold all the answers you have been waiting for.  For me it's then a race to see how fast I can flip to the bone marrow pathology report.  My heart is always racing and I'm definitely holding my breath as I scan down.  Thankfully it was again a huge sigh of relief to see there was no trace of myeloma!  My light chains are also normal, and some of my smaller bone lesions have healed.  I still have a long way to go with the lesions, but having some of them disappear is a good start.  I was Dr. B's fist patient and he was in a fabulous mood.  It was a day after his birthday (he immediately requested the happy birthday balloons be removed from his office after I mentioned it...ha!), and since he literally had just arrived nothing had yet gone wrong for him to get worked up over.  He wants me to just keep on with the maintenance (revlimid daily, velcade and dex weekly) and keep getting zometa monthly to hopefully help promote healing of the remaining lesions.  Those are the biggest concern for giving any residual or new cancerous cells a place to take hold.  My immune system and the maintenance can handle mopping up a low level, but once all the damaged places in the bones heal I'll be breathing much easier.  He also reduced my dex dose pretty much immediately when he saw me.  Treatment day was the day before, so I was coming down of the dex when I went in.  I'm always very flushed the next day.  The reduced dose seems to be helping me feel not quite so terrible the next morning so that's a good thing. 

So now it's time to enjoy the summer with my family.  Olivia just finished up kindergarten, and Oden will be FOUR in September.  They are doing great, I'm just so proud of them for taking this all in stride too.  :)

So to end here is a recent picture of me (in the middle!) from a recent girls-night-out with some awesome friends who have supported me through all this.  I hope they don't mind being posted!  I figure I should show off my chemo curls. 

Back in Arkansas for my regularly scheduled poking and prodding!

Ok well that sucked. I just tried to fix a misspelling in the title of this post and somehow deleted all the text. Stupid iPad blogger incompatibility! I'll have to try to rewrite it once I finish up with my MRIs.

Goodness I'm bad at keeping up with this!

And that really just means that things are busy, and it's been "good busy". :)

I've been feeling pretty good. A little tired from the anemia still, and a few little colds have blown through but nothing like November when I was so sick. I think it's a combination of my immune system improving and the fact that I now force myself to recognize I do still have limits and need to rest when I start felling something. Maintenance is going ok, the dex is still the worst part. I'm so amped and scatterbrained on the day of then coming down the next day I'm grumpy and short-fused. I need to do some research to see if there is anything that helps take the edge off the withdrawal. I started taking MetanX back in January for the peripheral neuropathy and I have really noticed a difference so I would recommend anyone experiencing neuropathy to try it out. It's a pescription B vitamin supplement approved to treat neuropathy in people with diabetes. It contains a specific form of B12 called methylcobalamin, the ore common cyanocobalamn is apparently not as effective so be careful if trying to supplement without the prescription. They prescribed this is Arkansas, and my home doctor/nurses didn't seem to know too much about it or give it to other patients. Hopefully me mentioning it to them will change that. Back in January I was getting tingling and numbness in toes and fingers starting about 24-48 hours after Velcade each week. I would also get a mild hot/burning sensation on and off, and my perception of hot and cold would be off in my fingers, which I found quickly was not so good when testing bath water. ;) At first I couldn't figure out why the kids kept complaining it was too hot. I have barely noticed any neuropathy at all for the past month at least, just the occasional very mild tingle but not every week and not continuously. No more burning at all.

I also determined last week that eating a big cheeseburger (of the delicious 5 Guys variety) may do wonders for my hemoglobin. On Wednesday my hemoglobin 11.9 (just under normal). On Friday I had a cheeseburger (normally I don't eat much red meat), and the next Wednesday my hemoglobin was up to 12.5! That was the highest it had been in months! Now I have a really good excuse to back my cheeseburger indulgences.

In other (mostly) non-medical news, March was super busy and it flew by! My daughter celebrated her 6th birthday, which was awesome. Last year I missed her birthday because I was in Arkansas getting started on treatment. That was so hard. I knew I was doing the right thing, but missing that day really hurt. Now a year later I've come so far, and we had so much fun making her birthday special. Although, when she woke up on the day I asked her if she was excited to be six. She thought about it and said "I kind of wish I was still 5, I really liked being 5.". So sweet! Also proof that we did a good job keeping last year normal for the kids. That made me feel really good, because that was one of our main concerns.

Now that it's been a year since I started treatment, I've been thinking back a lot. It's just crazy to think that last year at this time I had just arrived home after induction and stem cell collection. My hair was on it's way out then, and now it's a crazy curly mop! I'm not obviously a cancer patient anymore It's been a long year, probably the hardest of my life. I've learned so much along the way, met so many great inspiring people, and learned my fabulous my friends and family are even more amazing than I ever could have imagined!

Quick update on meeting with doctor...

Pleased to report it was all good news! My light chain is in the normal range and the bone marrow biopsy and fine needle aspirations were negative for myeloma! Some improvement was seen with the lesions on the MRI but I still haveva long way to go to heal those up. No big changes for now, just adding Metanx for the neuropathy from the Velcade. It hasn't been too bad, but it's noticeable and he'd like to see me stay on the higher dose because I still have so many lesions that need to heal up. I realized how much I miss down there. Top notch care from wonderful people and the other patients and their families are just fabulous!

Hello from Little Rock!

Back for my first check up on maintenance and as much as it's not pleasant to have a bone marrow biopsy, and two fine needle aspirations ... it is nice to see all the familiar faces. I meet with Dr. B tomorrow morning to find out how everything looks, so fingers crossed for all good news! I'm in the infusion clinic right now waiting for my Velcade and Zometa. Maybe it's a bit strange to miss this place, but it's just so much nicer than the one back home!

Happy New Year!

Feeling bad I haven't posted sooner, but it's been a busy couple of months with the holidays. The holidays were kind of a bust last year since my diagnosis came 3 days before Christmas. This year we had a much more relaxed time. Well except for the fall Oden took a week before Christmas that required 4 stitches in the forehead. And when I punched a whole in the foil roasting pan and set the smoke alarms off on Christmas day (then hit a squirrel on the way to pick up a new raosting pan at my mother-in laws house. Sometimes I swear we are like the Griswalds. The kids had an absolute blast though...and were spoiled completely rotten.

Unfortunately November was kind of a bust. I was sick literally the entire month. I started feeling it on Halloween and I didn't really feel better until the first week of December. I did two rounds of antibiotics and a course of an antifungal, but by Thanksgiving I thought I had broken a rib from coughing so much and my sinuses were so clogged I thought my head was going to explode. I was going to use Vick's Vapo Rub one night and I could not smell it even with my nose IN the container! It was miserable. After a chest x-ray a CT scan, and three days of flip-flopping they decided I had viral pneumonia. It made me realize it could be a long hard winter with both the kids in different germ factories every day, I try to be careful of what I touch when I'm out but it's hard to avoid them coughing and sneezing on me at home. I started feeling something again the week before Christmas, but luckily another round of antibiotics and antifungal did the trick.

Since my last post we had a fun Halloween with the wicked witch of the west and our little skeleton. If I had my other computer I would post some pics. They still have bags of candy in the cupboard...actually they still have bags of candy with last years valentines and easter candy too! I also celebrated a birthday, which I spent sick and getting a chest x-ray. Thanksgiving I spent in bed. Really I just needed a do-over for the whole month! December was hectic but fun with family visits, shopping, decorating, seeing friends, and even a cookie swap. I ate way way WAY too many cookies. Cookies for breakfast, cookies for lunch and dinner. Sneaking cookies while telling the kids they couldn't have cookies for breakfast. :)

We also had another birthday in the family on New Years Eve. My husband caught up to me again...thankfully I only have to suffer a month of hearing how old I am every year. We rang in the new year with friends and here we are a few days later settling back into the routine with the kids back at school.

I'm not one to wish away time anymore, but I am a little glad to see 2011 go. It was a long hard scary year. I tried to find the silver linings along the way though and despite all the madness there were quite a few. The best was all the amazing and inspiring new friends I met along the way. I'm very thankful treatment has been successful and that I got through things pretty smoothly. It's still a whole change in perspective though. There is definitely anxiety of a recurrence, but I don't spend too much time thinking about it. I just can't. It will be what it will be and I don't have control over it so I just have to keep living my life and not let it paralyze me.

I go back to Arkansas in a couple of weeks for MRI's and a bone marrow biopsy to see where things are. My light chain is still normal, which is a good sign but the MRI's and bone marrow biospy will tell us more. I'm hoping to see that some of the bone lesions start healing now that I've been on Zometa (bone strengthening) for several months. We want the lesions to heal because the damaged bone environment promotes growth of the cancer cells and would likely be the place a relapse would get started.

As far as maintenance goes, things have been going pretty smoothly. Most weeks I get some tingling from the Velcade about a day or two after the injection. I also get a small local reaction at the injection site. Just some redness and a little tenderness. The dex is still the dex. Coming down the next day stinks, I'm definitely edgy and grumpy for a couple of days. We also figured out that the Revlimid was giving me a skin reaction. I noticed in November that my face was very dry and peeling, and almost blistered in some spots. I thought at first it was dry skin from the season change, but no amount or type of lotion seemed to help. Thanks to google I discovered peeling skin can be a side effect of Revlimid. I let my nurse in Arkansas know and she had me hold the Revlimid for 2 weeks to help figure it out. The peeling improved greatly by the second week so they ordered a slight dose reduction. I've been on the lower dose for 3 weeks now and I have some dryness but much more mild than before. The nurse told me it's caused by a heightened inflammatory response. I have very sensitive skin anyway and also have rosacea, which is itself an inflammatory condition so maybe it's not so surprising.

So that's where we are now, it's a new year and we are hoping it will finally be a year with no crazy surprises. Although after this year, I know we can take anything that's thrown our way. :)

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!

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!

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

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.

Line is out, waiting for discharge!

Sent from my iPad

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!

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

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!

Sent from my iPad

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!

Sent from my iPad

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.

Sent from my iPad

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!

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!

Sent from my iPad

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!