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!

A word on coconut water.

BLECH!

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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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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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.

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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!

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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. :)