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.

Saturday, July 30, 2011

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!

Doxorubicin going in!

Here's a pic of the lines from the infusion pumps to my central line. The line on top carries the cisplatin, cyclophosphamide, and etoposide. The line on the bottom (orange) carries the doxorubicin (aka adriamycin). When I glanced down I saw hadn't made it's way all the way up the line yet (it infuses in pretty slowly), so you can see orange in the line to the left of the in-line filter but clear fluid still to the right.

Back in Arkansas!

I flew in Wednesday morning to get started with restaging (2 MRIs, blood draw, bone marrow biopsy). This is my last trip where I'll have to stay for an extended time! After this I'll move on to maintenance therapy, which I can do from home. I'll have to come back for check-ups every few months, but no more being away for weeks at a time. This round (consolidation) is very similar to the round I had on my first trip down (induction), but reduced doses so it should be easier (knocking on wood!). It's VTD-PACE...velcade (V), thalidomide (T), dexamethasone (D), cisplatin (P), doxorubicin (A), cyclophosphamide (C), etoposide (E). For the PACE part I get the pleasure of being hooked up to an infusion pump for 5 days again...can't wait to get my buddy back! Lol.

My flight got in about 10:30 on and my dear friend M, was kind enough to pick me up and bring me back to her house where our car had been parked. I didn't get to check out the new place we rented this time until after my first MRI and the blood draw. If you remember, we gave up the little house we had rented for the transplants since we would be gone another entire month. I used a corporate rental agency to reserve a 2 bedroom apartment in a complex other patients had recommended. It's in west Little Rock, so it's a little farther away from the medical center (and all our favorite restaurants), but it's a nice area. I was a little nervous after our first not-so-great experience doing a furnished rental, but thankfully this place is MUCH nicer. I got settled a little then had to head back to the medical center for my second MRI at 8 pm. I doubt there are MRI machines anywhere else that get as much use as the ones there...they run pretty much constantly more than 12 hours a day and mostly on myeloma patients! The second MRI was the long one where the do spine, pelvis, head and shoulders. It takes about an hour and 40 minutes total in the machine. It's a test of endurance to keep still and calm for that long, and it seems I always manage to finally doze off right before they need to reposition me or give me the contrast injection. I also was fighting a tickle in my throat at one point and it was torture trying not to cough. I usually don't get too anxious, but I might try taking an Ativan next time. The next morning I just had to get in for the oh-so-fun bone marrow biopsy at 9:15. I didn't wait long and my tech was pretty good so it wasn't too painful. This was the 7th one I've had since all this started and it wasn't among the top 3 most painful.

Of course the fentanyl lollipop helped take the edge of too! In fact I decided it would be a good idea to hang around for a while afterwards to wait for the fentanyl to wear off before driving, so I headed to the myeloma clinic to make sure things would be in place to get started with the chemo. If there is one thing I've learned it's to always follow up and double check that things are in place! I was scheduled to see Dr. B on Friday afternoon and the plan would be to start chemo on Saturday, but that would require getting a central line placed...which can only happen during the week. I knew I didn't have an appointment to get a line placed or start chemo because they wanted to see my lab results first, so instead of assuming that would all automatically happen I went over and asked to talk to a nurse in the clinic.

The first thing she said when she came out was "Girl, what is going on with your CRP?". She had pulled my labs and seen that my CRP was elevated. CRP (C-reactive protein) is a marker of inflammation that can signal infection so they want to see it in the normal range before they start anything that will compromise your immune system. Normal is under 10 mg/L, and I was at 19 so only slightly high...but high enough that it called a Saturday start to chemo into question. :( I explained I had been sick then week before (luckily the sore throat cleared up after a few days, but the congestion was lingering a bit), and we agreed it was probably on it's way down from that. Sure enough, a quick check revealed I had been 33 the week before, but she said we would have to repeat it Friday. So we reworked my Friday schedule and she sent the order for my line placement over so things would be set if I got the go-ahead. She moved my appointment with the doctor to the morning and I was to be there at 8:30 for the blood draw. Things were sounding good!

But if there's another thing I've learned...it's never expect things to run smoothly on a Friday in myeloma land!

I went in for the blood draw, admittedly 30 minutes late, then just headed to the clinic to wait for my 10:30. I got called back to a room really fast, but then found out some of my restaging test results weren't back yet...the DWIBS MRI, and the bone marrow/gene array. I knew this was a bad sign, a sign I would be waiting there for a while. Over the next two hours I got a few updates that they were still calling and trying to get the DWIBS results. It had been escalated to Caleb to work on at some point, but eventually (at about 1:30 pm) when it still wasn't back they said they were taking me down to see Dr. B anyway. I was third in line once I got down to the fourth floor where he sees his patients and within a few minutes the current patient came out of his office. A second later he came out too, he said hello and hugged everyone, then apologized and said he needed to go get something to eat and he would be back in twenty minutes. GAH! Now I had actually just been wondering if he actually stops to eat on the days he sees patients, and I am glad I found out the answer. I can't say I was glad it was holding me up longer, but such is life. He has lost a noticeable amount of weight since his surgery in March and I want him to take care of himself so he can take care of me! My nurse came down a few minutes later and told me to go get my line placed then they would bump me in front when I came back. Unfortunately my CRP number still wasn't back (I would find out later they messed up and didn't even run it) so I didn't know yet if I would be starting chemo the next day.

So on we go with the Friday madness! I headed over to line placement, which for those in the know had always been done in the old hospital building near PET scan. Its a hike from the myeloma clinic. Once I got there I was kindly informed that they were now doing the line placements at Interventional Radiology in the new hospital. The waits at interventional radiology are notoriously long so I was worried, but luckily I was called back pretty quickly once I trekked over there. My second favorite German doctor placed the line and I was back at the myeloma clinic before 3:30. Maybe there was at least some hope I would make it to pick up my Dad at the airport at 4:30! I felt bad jumping in front of the others who were waiting to see Dr. B, one of the men recognized me from the blog and said everyone was waiting for an update...so here it is, and now you know why I was called in first!

The appointment with Dr. B was short but sweet. The DWIBS results even finally hit the table when I sat down. My bone marrow is normal, my light chain ratio is normal, and all my lesions are stable...or in other words, complete remission! I had hoped to see my lesions shrinking, but he didn't seem concerned not to see any change yet. The only bad news was that the CRP hadn't actually been run and he wanted to see it going down before he would give me the go to start chemo. He sent me back up to the nurse and she was happy to inform me I wouldn't have to wait for another blood draw, which was a small consolation. She had called the lab and they were able to add it on from what they had drawn earlier. By this time it was after 4, so there wasn't much hope I would hear the result by COB...but at least I wouldn't be too late getting to the airport! I actually got an email that his plane was delayed a little so I was safe on that front. The nurse got all my orders ready and got me an appointment the infusion clinic for 11am today, I would find out once I got there if my CRP was low enough for me to start the chemo. I went to pick up my dex then headed to the airport!

My dad and I went out to dinner then picked up a few things at the grocery store. I knew he had been craving his new favorite (chicken fried prime rib) from the Red Door, so we headed there and we weren't disappointed. :) YUM!

This morning we headed to the clinic for 11. I had them let me back to ask for my CRP result right away so I would know if it was ok to take my first dose of dex. They recommend you take the dex in the morning because it's a steroid and it makes most people hyper. I was happy to find out my CRP had been 10 yesterday so I was good to get started! It might seem odd to hear I was excited to get started, but the sooner I start the sooner I'm done and any delay means I have to stay here longer! So down the hatch went the first dose of dex, and they called me back soon after. My nurse drew my labs, gave me my velcade infusion, anti nausea meds, and Lovenox shot then hooked the chemo to my line. I'll take my first dose of thalidomide tonight and so it's on like donkey kong!

Sent from my iPad

Monday, July 18, 2011

Taking my new immune system for a spin

Well I knew it would only be a matter of time before some nasty germs caught up with me, but I was still hoping I could escape getting anything until after my last course of treatment!

I woke up this morning and my throat was on FIRE.  I also have a little nasal congestion but my glands don't seem swollen and I don' have a fever, so that's good news.   I'm just laying low and keeping an eye on it for today.  I took some ibuprofen and my throat feels much better now.  I have to go for labs tomorrow and I already have an appointment to see the nurse practitioner so I'll have her check me out.  

Let's just hope whatever it is clears out before next week, since I'm supposed to be heading back to Arkansas to start consolidation!

Friday, July 8, 2011

It's great being home but it's hard having limits...

It's almost two weeks now that I've been home after the second transplant. The recovery continues but I feel like I'm doing well considering what my body just went through. Last week I tried to rest as much as possible by mostly staying in bed during the day and I needed it. I had pretty much the same issues I had after the first transplant...heart palpitations, trouble regulating my blood pressure, trouble staying hydrated, headaches, dry eyes, etc. In some ways it's been harder this time with the heat of summer. I have felt much worse going in and out between the sweltering heat and the air conditioning. Saturday evening I felt terrible after we went out to run some errands. I thought if we didn't take the kids with us I would be fine, but I still overdid it. I drank a ton once I started feeling bad thinking I was just dehydrated, but I think my body was having trouble regulating my core temperature. I felt freezing cold but had a slightly elevated body temperature. At first I was afraid I was getting sick, but my body temp came down after a couple of hours and I never had any other symptoms.

It's hard having limits!!!

I took it easier the next couple of days and we still managed to do some fun things with the kids for the holiday (including hitting the local fireworks display) so that was nice. This week, I'm overall feeling better than last week, but I'm still tired and don't have much stamina.
I was kind of surprised that all my hair fell out again, just after it started to grow in. I didn't lose more from the first transplant after losing about 80-90% after the induction course of chemo. This time it's more like 99% of the hair on my head. My bottom eyelashes are going again too, but so far my eyebrows are holding on. I hope they continue to hold on!

I am very thankful that I've tolerated the treatment so well. At first I almost felt guilty for doing so well through the transplants, while other patients struggled a little more. A friend responded to that thought by saying I shouldn't feel guilty because my experience coming through with minimal side effects gives other people hope. I thought that was a great perspective.

Now I think I need a bumper sticker or T-shirt that says "I survived two stem cell transplants". ;)

So now I'm just looking forward to getting this last long trip back to Little Rock over with so we can get back to our life. It's been hard putting everything on hold these past 6 months, and hard mostly losing our summer and not being able to take any vacations for FUN. In the end though it's these little faces that make it all worth it...