Friday, May 30, 2014

More than a normally crazy week...

First, apologies - I'm not who you're here to read.  In addition, while I think that at my best I'm a passable writer, I will make no such claims today.  But, since it's been an interesting week and Beth is unexpectedly computerless, I thought it would be worthwhile to make an effort at an update.

An update on Beth (and her computerless status)- after a good visit with her doctor yesterday (more on that later), Beth wasn't feeling physically as good as she was mentally.  She'd felt more tired than normal all day and been running a consistently low-grade fever.  This isn't too atypical after the rituximab, so we weren't too concerned and Beth went to take a nap when we got home.  Flash forward a couple of hours - as I'm getting the kids ready for bed, Beth checks her temp again and it's jumped to 101.  With her white and ANC counts where they are, that's not a great sign, and as we expected the hemonc on-call wanted her to come into the ER.  We told the girls that Mom was going to the hospital after they fell asleep and then they went to pack.  We thought it was important that they not be surprised if Beth wasn't there in the morning, but needless to say, it didn't smooth the bedtime process out much.

They wanted to keep Beth overnight for observation and started her on IV antibiotics while doing blood cultures to see what was up (those take 48 hours, but the antibiotics start immediately - if nothing cultures and it turns out to be viral, they can discontinue, but with her immune system they don't take any chances).  Today Beth was doing pretty well, but her fever started to pick up again toward the end of the day (about 20 minutes before they were planning to discharge her) and they are going to hold her another night.  If they keep her longer we'll need to drop off her kindle charger and the computer, but we'd much prefer that she get better and come home.

Net, Beth is in the hospital, doing as well as can be expected but is anxious to get home, which hopefully will be late tomorrow.  This will make logistics complex, as we also have a family volunteer commitment in the morning (me and the kids), a piano try-out and recital, a softball game, and a party to go to; Margaret is at another birthday party tonight.  Hopefully Beth's discharge is conveniently scheduled, but based on prior experience I have no such expectations!

On the longer term front, we confirmed the plan for the next phase.  We have another round of blood tests on Monday; presuming those are stable or improving vs. last week, that would indicate that the rituximab may have done some good in clearing out her marrow and that it is working to repopulate Beth's bloodstream.  If that's the case, then we'll give it another week to keep doing that before we go back to the hospital for cladribine (7 days inpatient plus however long it takes to get rid of neutropenic fevers and infections - we're anticipating 3 weeks, optimistically).  If blood work isn't doing so hot, we might accelerate to as early as Wednesday, so that Beth can be there for the end of school festivities on Tuesday.  We'll do it here in Cincinnati (vs. NIH) so that Beth can be closer to family.  While treatment at NIH would allow the results of her treatment to be used as a data point in identifying treatment options, the actual treatment plan would be identical, and from a patient standpoint neither of us thinks it makes sense to have Beth potentially away from her support system here for that long (particularly since the follow-up rituximab treatments might also need to be there).  So - there's a plan!

Having Beth in the hospital, even temporarily, definitely makes the next phase feel less abstract.  I'm sure we're going to manage everything, there will be a lot of adjustments to Beth being gone that I probably haven't internalized/recalled yet.  (She's the planner, for example.  I just go where I'm told!)  I'll close it here, but thanks for reading and for all the love and support that people have shown - knowing how many people are in our corner makes a big difference.    

Wednesday, May 28, 2014

A year older

Last week I officially turned the big 4-2. I really love my birthday and after I was first diagnosed with leukemia decided every birthday was worth celebrating. This one was a bit more on the chill side (may have to have a big bash for my half birthday) but thank you to everyone for all the birthday wishes and treats!

My parents arrived on my birthday for a couple weeks to help which was the big gift. They came ready to jump into kids activities and were whisked off to Margaret's softball game while Kath and I read and rested up for cake. Chad was about to cut the cake without candles and singing and I put the hold on that because I really needed my wish this year!

We pulled out candles and had no where near 42, so Chad and the girls went with the sum of the digits, 6 candles. The girls thought it would be perfect if Chad lit two and they both got to light two. Sounded okay since they are 9 and 11. Once they were handed the matches it became clear they had not never held them before. Margaret was holding hers straight up and down so the first thing I blew out was the match before it burned her finger. Chad quickly took over and happy to say we did not end up with a house fire (wish one of the night granted!).

It was also a nice gift to have an extra day between rounds of treatments. With the holiday my treatment was yesterday vs Monday. Yesterday was like the others and am glad it was the last of that round. There are small signs in my blood work the rituxan is working which is great, but the drug had destroyed most of the red blood cells I got in the transfusion last week and my white blood cells and everything that fights infections are still very low. The good news was my platelets were up (sometimes a leading indicator of more good news to come) and also the count of the starter red blood cells was up (my reticulocytes) were higher than normal so my bone marrow is working to try and produce more red blood cells and catch me up also a good sign.

We were able to move up my doctor appointment to tomorrow to align on the chemo plan so will let you know what we decide.

Tuesday, May 20, 2014

Food is Love

Chad and I both consider ourselves from the South. Not long ago we were talking about this with the girls and their response was "Hold on! You are both from Virginia - thats not in the South! Thats a Mid-Atlantic state." While their geography was right, we seized the teachable moment to talk about the Civil War and the Mason-Dixon line, and where their grand-mothers grew up. Chad's mom grew up in Jackson, Mississippi, and my mother grew up in Charleston, South Carolina, and Knoxville, Tennessee. So kind of similar to "mother tongue" we feel more Southern in many ways even though Virginia is in the Northern part of the South. 

If our mothers are very Southern, their mothers were even more so, never living outside the "deep South". When Chad and I got married only our maternal grandmothers were still alive and they were both in their early 90s... Anyway, we soon realized our grandmothers had more in common than age. They both grew up on dairy farms and both had passed along to our mothers (who in turn passed along to us) the idea that food is love

Breakfast at our both of our grandmothers always included biscuits and sausage (yes, that is right - included - but there was always more). I was glad when we went to my grandmother's that Chad knew that it was polite to not only eat some of everything, but to over-eat the biscuits and sausage in particular. 

We so appreciate the meals that people have already made for us and those people are planning to bring. To us it is a huge sign of your love and support for us. It will also practically be a big help.  I am the one that usually does the cooking and having been so sick have not felt like doing much of anything, much less cooking. Huge thank you for this!!

As for my weekly health update, yesterday I got my weekly treatment of rituxan plus a unit of blood. My hemoglobin was about the same as last Wednesday which was good news. We were expecting it to fall so I was technically above the limit where I had to get blood but still 25-50% below normal range so they gave me blood to help give me a little boost of energy. It has definitely helped and I can walk a flight of stairs without needing a rest at the top. My platelets were also up slightly which was good, but my neutrophils dropped by 50% again so they are getting to be near non-existent. My already bad immune system has gone from bad to worse.

Unfortunately the rituxan flu like symptoms are the same. The first week by Friday I did not feel nauseous. Last week it took until Sunday... hopefully I get at least a day off before my last round! 


June 2 is when I tentatively will meet with my doctor to agree on chemo course of action. I was asking the nurses in the infusion room if since my counts had dropped with ritux would they wait until they rebounded to start chemo. They said I was the only person they had ever seen it have that effect on (great), but they thought no chemo would start right away. Right now Chad and I are still leaning towards inpatient and another round of cladribine to get it done with versus stretching chemo out over 6 months. This one month of every week feeling like crap and getting a few days of feeling okay and starting over has not been fun.
  If we do in-patient it will likely start the day after Katherine’s 5th grade graduation so we’ll have a day to celebrate that milestone before going into the next phase…

Thursday, May 15, 2014

How I am Feeling....

I really prefer to write about other things going on versus how I am feeling. Thinking too long on how I feel these days is too depressing .

The short answer to how I feel is a I feel lousy, and it is only going to get worse. Chemo is coming. The drug I am getting every Monday is leaving me feeling like I have a bad case of the flu (chills, headache, achy, tired, nauseous, etc.). This week I learned each week would be getting progressively worse. This is apparently a "common" side effect of rituxan.

On top of that I am also having the rare side effects of suppressed counts. I was back at the doctor all morning yesterday for some tests, fluids and meds. The tests were to see if rituxan had induced an autoimmune disease causing the premature breakdown of red blood cells or if the drug was doing it on its own. It has come back that is is the drug causing the breakdown. So what they do for that is treat the symptom which means blood transfusions will be starting up for me Friday or Monday. My hemoglobin was down again yesterday from Monday to right at the transfusion level yesterday. They debated giving me a transfusion but decided to wait in case they needed more tests on my blood.

With rituxan breaking down my red blood cells it is causing my hemoglobin (which carries oxygen through your body) to drop significantly. This makes me even more weak and tired. Transfusions should help some but last time around I was getting transfused every 2-3 days and it takes several hours so it helps but is also a bit of a tiring process.

I also got the word yesterday I needed to stop work for awhile. I am feeling awful and is looking like just Mondays at the doctor are turning into 2-3 day a week visits for tests, fluids, other IV meds and as soon for transfusions.

On the NIH front, things are still rambling along. My doctor's office FedEx'ed NIH slides of my bone marrow biopsy yesterday that they requested and now the hope is to have their final reco back by last week in May when I finish the last course of this round of rituxan. We are mentally planning that what will be next will be a stay at UC for chemo but we'll see.

The girls continue to be very resilient to my lack of energy and not feeling good. They are taking on more chores to help (e.g., more help with dinner prep, clean up). So they are actually excited because they are getting a boost in allowance to go with it. Right now they get $1/week for the basic chores they do now (e.g., making their beds, putting away close, feeding dog). Katherine told me the other day "you are making me rich!" when I gave her allowance for the week. They are thrilled that it will be doubling. (Please do not let your children let them know what they get because we know we are way below market rates!!). So the girls are enjoying all the end of school year activities and they are very excited that their allowance is getting a boost..... so always an upside to everything.

Tuesday, May 13, 2014

Distractions

The first distraction of our last week/weekend was one we had been expecting - tired Katherine. End of last week was the annual 5th grade overnight trip to Dearborn, MI, to the Henry Ford Museum and Greenfield Village (colonial working village). Katherine was SOO excited, she had been looking forward to the trip for awhile and it did not disappoint. She had a great time. However, leaving at 6:45 from school on Thursday, returning to school at 11pm on Friday and sleeping in a suite Thursday night with 7 girls and a teacher left her wicked tired. Unfortunately, sleep deprived Katherine, to put it mildly, is no fun to be around.

We were planning to sleep in on Saturday morning to help temper the mood of the aforementioned under rested pre-teen, however, Mother Nature had other plans. A huge dead tree that we thought was on our neighbor's property, and they thought was on ours, feel on our house about 6:30 am Saturday morning. Yes, you read that correctly, a tree fell on our house Saturday. (Just what we needed!!) We were lucky because it actually more fell into the back versus on the roof so it left us with broken screens, windows and deck furniture. It was the sunroom it fell into which is where the girls play a lot so we are glad it happened when no one was out there. The other upside of the tree disaster was Chad finally got to buy a chain saw (once we pushed the tree out of the driveway and cleared the glass). Chad got his fill of chainsawing, I was on glass clean up duty and it is more or less okay, and contractors have been scheduled for the windows, screens, house damage, etc.

The other big event in our house this week is a new sitter starts. Our current sitter graduates from Xavier this weekend and gets her MBA and is moving. The new sitter is a Xavier nursing student but also a bit of transition.

So my cancer has really taken a backseat to other events lately. I had rituxan treatment number 2 yesterday. It was a few hours faster this time since they went ahead and gave me upfront all the meds they ended up giving me last week to counter the allergic reaction. Let's just say with three Benadryls plus the equivalent dosage of an anti-nausea drug that makes you sleepy I was out for most of the day (and am still pretty groggy today!).

The only other news from yesterday was my counts were down vs up which is what was suppose to happen with this drug they are giving me. My hemoglobin dropped a full point (which makes me that much more tired with even less oxygen in my system). If it does the same thing next week I will hit the transfusion limit and that will start up again. Right now the plan is 2 more weeks of rituxan then in patient from claidribine + more rituxan but will see if my counts next week result in a change of plans.

Huge thank you to Molly for taking me for my treatment yesterday and hanging with me, and Jack for doing the second shift and getting me home, and to Sofie for a wonderful dinner for our family! We are so thankful to have so much support as we are going through this.

Tuesday, May 6, 2014

Sleeping beauty awakens!!

I feel like I have been under some crazy sleep spell. We got to the doctor yesterday at 9 and it was about 4 when we got home but it just felt like a few hours to me. When we got home I made a beeline for bed where I conked out until 11:30 when I woke up briefly for water and meds, then went right back to sleep until morning. Chad roused me with the girls for some toast but all I wanted to do was go back to sleep.

Yesterday when we got to the doctor I was giddy excited to get things going. They "accessed" the port cleaning the skin on top of it and sticking a needle in it that they then hooked up to draw blood and give me my various drugs. They started with a round of pre-meds to help alleviate the allergic reactions (2 benadryl and 3 other drugs). It started off fine. I was pleasantly surprised by the great collection of People magazines in the infusion room and started catching up on the latest fashions and gossip. After about 45 minutes though I started to not feel right - heart was fluttering, chest pain, headache, nausea - it got badly quickly. They stopped the ritxan, gave me more benadryl and lorazepam (I am allergic to the good anti-nausea drugs) and pretty much knocked me out for the rest day/most of today so far.

Today when I have been awake have felt like I have the flu - dizzy, headache, weak, nauseous, and slight fever (but below what would send me to the doctor). I am sleeping and hoping tomorrow this will have all passed.

My counts are not doing well so hopefully the rituxan helps. Yesterday they were down a lot across the board....still better than when I was first diagnosed but otherwise looking pretty grim....curious to see if my counts will be up next Monday or down. If sleep truly is curative I am doing my part on that front!
 
  Platelets Hemoglobin White Blood Cells Neutrophils
Normal Range  140-400 11.7-15.5 3.8-10.8 1500-7800

10/10/2012 - diagnosed
11 6.1 2.7 100
11/12/12 - left hospital  31 10.5 1.1 668
11/15/2012 50 11.0 0.9 420
11/19/2012 66 10.8 0.9 510
12/17/2012 106 12.2 2.4 1783
1/24/2014 122 12.4 1.8 1082
3/11/2014 104 11.2 1.2 592
3/26/2014 102 11.8 1.1 541
4/7/2014 84 11.6 1.3 504
4/14/2014 94 11.2 1.2 466
4/21/2014 95 11.6 1.3 610
4/30/2014 81 10.8 0.9 289
5/6/2014 62 10.3 0.8 231




Monday, May 5, 2014

Starting the next marathon..

This past weekend Cincinnati held the 'Flying Pig' marathon.  We didn't attend (Beth was recuperating from her port surgery on Thursday), but we were excited to start this morning on our own challenge - the beginning of chemo again for Beth.  This round is starting with four weeks of rituximab, which is intended to knock the leukemia back a bit before the next course; this should allow her blood counts to recover a bit as well, which will be a good thing.  The doctor at NIH strongly believed that Beth's adverse reaction to cladribine was likely to be related to her being transfusion-dependent when she started, so having better counts should give us more confidence in either cladribine or pentostatin as the next step.

We had been warned about a fairly high rate of allergic reactions, including some cardiac effects - cardiac arrest is noted as a possible side effect, but I think it more typically results in atrial fibrulation (elevated heart rate, etc.)  Given Beth's strong reactions to most drugs we came today prepared for the worst, and they planned to infuse her over 4.5 hours with breaks as needed - vs. as little as 90 minutes normally.  After giving her several pre-chemo drugs to reduce the risk of an allergic reaction, they started the rituximab.  After about 40 minutes, Beth started having intense nausea, etc., but this resolved relatively quickly after they stopped the rituximab and gave her some lorazepam, which is the only good anti-nausea medicine she isn't allergic to.  The chief side effect of the lorazepam is fatigue, so Beth drowsed her way through the rest of the treatment, which went off without further incident.  Beth is clearly on the 'gentle' pace today - we've had lots of other people go through the infusion room for chemo while we've been here.  Given the result today, though, I think that at next week's treatment they'll just start her off with the anti-nausea meds and it will likely go faster.

On the NIH front, we've not seen any detailed results (it's not clear exactly when that will happen), but our doctor spoke to the doctor there and it sounds like Beth is not a candidate for the monotuximab clinical trial we were considering; that trial requires at least one failure of another frontline therapy (either pentostatin or cladribine), and while Beth's remission was pretty unsatisfying (from a duration standpoint, anyway), it apparently wasn't short enough to count as an actual failure.  The good part of this is that it takes out some of the uncertainty about where we go next - we'll clearly be at UC and going with one of the two conventional therapies for now.

No other news today - we continue to be touched by the care and concern of so many people and are deeply appreciative of all the offers of help, etc.  

Sunday, May 4, 2014

Coming out of my drug induced sleep haze...

Getting the port definitely falls into the category of "be careful what you ask for".

They did the surgery at UC in the same day surgery unit. The nurse who prepped me said it was where they did surgery for "healthy patients". (That comment was the highlight of my day!) The big surprise was that on top of the incision in my chest to insert the port they did an incision in my neck and then catheterized a vein (put a tube in it down to the port).

I woke up from the surgery and it hurt like heck to swallow. They thankfully quickly gave me more pain meds and wrote a script for me. It was yesterday before it did not hurt to swallow, talk, move or eat. Today I am feeling much better as both the port and tube seem to have settled into my body more. I am very glad I did not have chemo on the same day as the port surgery!!

The pain meds have helped but they have also kept me sleeping most of the last few days. I am going to try and start to taper off them today but we'll see how that goes. I cannot lift anything over 10 pounds, or swim or take a bath for the next 6 weeks but otherwise soon should have mostly recovered for this first step in the process to get well.

On Thursday afternoon when the girls came home Margaret kept leaping on me, hugging me, and generally forgetting what had happened. I asked the girls if they wanted to see it and they answered together with a resounding "No!". They have seen gotten glimpses of it and Margaret is clear it looks "creepy". She is definitely right on that. The stitches all dissolve and there is a clear steri-tape over it that will dissolve over time. It is great that I don't have to get stitches out, or change dressings, but it is very visible and not the most attractive.

So I am more, or less, ready for tomorrow and hoping I don't have a very bad reaction to rituxan. Also, people have asked about NIH. I don't have an official report or recommendation from them yet. We agreed with them the right first step was a month course of rituxan. I am assuming I'll learning more tomorrow or next Monday on what the NIH tests showed and what they recommend going forward.

Thanks to everyone for the support in so many different ways!! We all really appreciate it.




Thursday, May 1, 2014

Port(ed) Elizabeth

Well, it's official.  The Port Elizabeths (South Africa and NJ) that you knew have been joined by another, my Port(ed) Elizabeth.

Beth's port surgery went well today.  As with most hospital/medical experiences, it consisted largely of waiting, answering questions she'd been asked before (what procedure are you here for, what allergies, what diagnosis, how many times have you had chemo, any allergies, current medications, etc. etc.), waiting more in a different room, being asked the same questions again by someone else, and then about 30 minutes of medicine crammed in there in the middle, with after-effects much worse than she was led to expect, after which she was sore and groggy.

The port itself is an implanted device which lets them get blood and give infusions without having to find a vein every time - it's implanted under the skin and gives them something else to aim for, with significantly less discomfort.  Beth's veins were getting pretty scarred and hard to get with one stick, so with the expectation that there's a lot more testing and infusions to come she was really looking forward to getting it.  Funny how leukemia changes what you're looking forward to...  The port looks like a half of a superball got implanted under her skin next to her collarbone, but  once the incision is fully healed after a month or so she should be able to swim and pretty much go about her normal life, and all the bloodwork should be easier immediately.

Beth has been resting since she got home - the pain at the incision site is definitely worse than we expected, but hopefully that will decline quickly.  I stopped at the pharmacy to pick up her medication and got a big smile from the pharmacy tech - he may have been hoping I would share Beth's percocet...  But we're not going to have a big party - just try to be quiet and let Beth rest.

Will cut this short as homework calls, but it was net a successful day.  Beth is well and resting and we are both looking forward (if that's the right word) to her starting treatment on Monday.