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. 

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. :)

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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.