I'm famous!

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

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

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

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

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Time to get started with the second transplant

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

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

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

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

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

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

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

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

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In the news...

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

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

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

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

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

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Sorry for the blog neglect!

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

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

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

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

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

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Labs all looked good

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

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

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

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

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Great to be home!

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

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

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

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

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