Rest Day

Looking great and flashing his charming smile!

Today was Brian's "rest day" which means he did not get any chemo nor did he have his transplant.  It is a day for the chemo to get out of his body so that he is ready for the stem cells tomorrow.  For the most part, he had a good day.  This morning he started his day with some push ups and squats!  The doctor and nurse practitioner were pretty surprised by this...it's always good to keep them on their toes!

His counts dropped quite a bit today, which was expected due to the ATG he received yesterday.  Here are his "stats" for today: WBC 0.1, ANC undetectable, HGB 9.7, platelets 39, and...drum roll please...creatinine 1.5!!  I have not seen him smile quite so big as when they told him his creatinine - what a relief that his kidneys are "playing ball".

As far as the events for today go, there were only 2 unusual things that happened.  First of all, he had a breathing treatment called Pentamidine (see the photos of him in the plastic tent), which is an inhaled antibiotic to protect him against PCP pneumonia.  Here at Sloan Kettering they do Pentamidine for everyone during this phase of transplant because the 2 other main medications for PCP pneumonia have the potential to suppress your bone marrow, so they take every precaution to avoid suppressing the marrow for longer than necessary.  He did these breathing treatments in Kansas after he lost his graft and had to be re-transplanted back in April of 2011, so these photos might look vaguely familiar to many of you.  The other thing that happened is his primary physician here, Dr. Koehne, came by to check on him and see him.  We haven't seen him since his last doctor's visit, so it was nice to see him again and chat for a little while.  We made sure he saw all of the pictures of our kids up in his room so he knows how important it is for Brian to make a full recovery and get back home to those darling kids of ours!

Getting his Pentamidine behind a plastic tent

This evening he has started feeling the effects of the chemo...he has a slight sore throat, is pretty tired, and has a little headache.  I'm guessing tomorrow he will not be quite as spry and will likely not be doing push ups or squats.  But all in all things are going well and we feel extremely fortunate that he's been feeling so well the past few days.  Yesterday the nurse practitioner told us that most people have already stopped eating and drinking by this stage, so I think Brian is doing remarkably well considering all that he has been through.

Still feeling okay, but not for long I'm told...

Walking Sept 2.

Brian here, I had a couple of rough days where I was pretty out of it. 10 rounds of Busulfan,  4 days of Fludarabine the 2 days of Melphalan and now I've got through the first of 2 days of Rabbit ATG - this brings down what is left of my immune system and destroys my own T-cells. I spiked a fever of 102ish yesterday and am continuing on antibiotics. I slept most of the afternoon, but  felt better in the evening. So just one more day of Fludarabine and Rabbit ATG before the transplant. I ate the bacon out of a sandwich and some other less interesting food for dinner. We walked the halls again thinking it may be my last time my ANC would allow (when it goes below 1 I have to stay in my room). So here's a picture of the very walk. I get ATG again today it normally goes in without a fight the 2nd time so it should be a quiet day. I did notice my resting heartrate sitting here in bed is 120, so that's a little high and maybe a reason I haven't been sleeping. Everything else
on target I think. Got my counts while out in the halls this morning and they show thst this is my last steps out here for a while.
WBC 0.5
ANC 0.5
Hgb 10
Platlets 65
Creatinine 1.6 - very pleased about this number at the moment!

Almost there

Sorry for the delay in posts...I ended up getting really exhausted and going to my aunt and uncle's house in New Jersey for a good night's sleep last night.  11 hours of sleep (with no mask or gloves) later I feel much better!

Today Brian has started his final drug called Rabbit Anti-Thymocyte Globulin, Thymo in short.  Yes, it's from a rabbit's blood and it is made of antibodies that function as an immunosuppressant to suppress his T-cells so that they don't attack the new stem cells.  This drug has to be infused over 12 hours both today and tomorrow because of the side effects that it can cause - mainly fever, chills, and rigors (shaking).  So far Brian has tolerated it well.  They have been able to titrate him up to the maximum dose and he hasn't had any side effects yet, except just in the past 20 minutes or so he's started to feel cold.  This means that he will likely get a fever and have rigors soon, but we'll see...

As far as his counts go,  things started to drop today.  For those of you who are interested in his "numbers", here they are: WBC 1.6 (down from 2.6 yesterday), ANC 1.4 (down from 2.5), Hemoglobin 10.1, platelets 95, creatinine 1.6.  We're so happy that so far his creatinine is holding stable!  Thank you for all of your prayers and good thoughts over this!

The past two days have been fairly uneventful thankfully.  Brian has actually felt a little bit better, so has been able to walk around and eat a little bit.  It was a good time for me to get away and take a little break.  The biggest thing that happened is that we changed rooms yesterday so now we have a room with a view.  It's cloudy and overcast today, so I will post a picture once we can get a nice, sunny one!

Quick update

I wanted to post a very quick update (I'll update more later) that Brian developed a fever last night and had to have blood cultures, a urine culture, and a chest x-ray done.  He still has a slight fever this morning, so he's on 2 IV antibiotics (Vancomycin and Zosyn) along with his antiviral and antifungal medications.  Pretty soon he's going to be bionic!  He's still very tired but seems to feel a little bit better than he did yesterday.  The doctor came in and said that the chemo he's on right now (Fludarabine) is very well tolerated and so he might even regain his appetite for a few days before everything starts to hit rock bottom...we'll see.  Last night was a very rough night, they were either in here checking his temp and other vitals or his IV pump kept beeping all night.  I don't think either of us got more than 1-2 solid hours of sleep.  Brian's sleeping again right now and I'm going to try to go back to sleep, so if you try to call us and we don't answer, that's why.  Brian is really not up for phone calls these days, so if you send him messages via email I can read them to him.  Thanks to everyone for all of your support!

Halfway point...of chemo!

We're halfway done with chemo!! Today he got his 2nd, and last, dose of Melphalan and he also got his first of five doses (one per day) of Fludarabine...so 2 down, 2 to go. Counts are still fine, actually went up today which is kind of weird, but we'll take it. And creatinine is stable at 1.6 for now.

Today started off rough - the first thing he did when he woke up was vomit...no fun. But after that they've been pretty aggressively managing his nausea, so he's actually been sleeping most of the day. I'm confident that he will NOT remember these next few days due to the antinausea medication (Ativan) causing him to sleep and also having that lovely amnesic affect. I, on the other hand, will remember it all. I've often said that they should also seriously consider medicating the caregivers:)

What's missing from this picture?  His IV pole!!  He was free
and then tuckered out after his shower.

Not much really happened today.  The most exciting thing was that they changed all of his IV tubings, so he got to shower without the IV pole. This only happens every 4 days, so he took a nice, long shower and enjoyed it.  Also, we ordered some photos to hang up on his walls and they arrived today, so I got to decorate:)  Tonight my brother, Zach, is coming into town and we're going to have dinner together to celebrate my birthday (which is tomorrow). I'm really excited to see him and to have a little fresh air along with a nice glass of wine!

And a decorated cabinet, too.

Our decorated bulletin board

 

1 down, 3 to go

Eating ice chips!

It's Kristy writing tonight - Brian is fast asleep in bed...that means you'll get a lot more detail from me:)  Today had some ups and downs, and is definitely the start of the downhill spiral towards not feeling good.  He woke up this morning feeling nauseated and even requested a dose of Ativan for nausea.  After that kind of "kicked in" he went for a walk around the unit and had a good afternoon.  He just needed to get over the morning hump and then he was fine.  He got his last dose of Busulfan at about 12 noon (yay!) and then started his second chemo, Melphalan, at 3:15.  He had to chew on ice chips for about 1.5 hours before, during, and after the infusion in order to decrease bloodflow to his oral mucosa and therefore reduce the likelihood of getting mouth sores.  This is the one that caused him to nearly need dialysis after his last transplant, so we're hoping and praying that doesn't happen this time.  There are 3 big differences this time that are in his favor: 1. He is getting a slightly lower dose this time since he is receiving it with 3 other chemo drugs, 2. His baseline creatinine is much lower than it was last time, and most importantly 3. His disease is under much better control going into this transplant than the last.  So we're keeping our fingers crossed that his kidneys cooperate with us this time and don't make things too exciting any time soon.  All of his counts are still fine, so no transfusions needed yet.  Today is the first day he hasn't really eaten much...things are starting to taste funny and food just doesn't sound good to him.  But he's still drinking a lot, which is more important.

 

I look scary and alien-like while alseep!

Many of you have asked how I am doing, sleeping, getting on, etc.  First of all, thank you for all of your thoughts, texts, emails - they really brighten up my day!  I am actually doing ok.  I am sleeping much better than I expected to sleep on a recliner, which is a huge bonus.  The recliner folds out completely flat and I brought ear plugs and an eye mask (and sleeping pills) to help me along, so I'm actually doing great.  The hardest part is learning how to sleep with the mask and gloves on...but slowly I'm getting used to it and sometimes I don't even notice the mask anymore (except behind my ears where the elastic bands rubs).  I'm getting out every day and going for either a walk or a run - this helps my sanity tremendously, plus it's keeping me healthy.  Today I went for a 3 mile run along the river and it was absolutely gorgeous.  It was perfect - 80 degrees and sunny, and I had a lovely breeze off the water keeping me cool.  If I could replicate that every day I would, it really was wonderful.

View on my run along the East River

Once more into the breach dear friends....

Well today was fine, lots of walking the halls as I'm guessing by tomorrow my ANC will be under 1.0 and I will be confined to my room. I have noticed this evening the chemo is starting to show, I ordered dinner but have no interest in eating and fatigue has also begun. I took a nap this afternoon and didn't wake when Kristy came in. Tomorrow is more Bulsulfan and the start of 2 days of Malphalan so I expect it to get much harder pretty quickly.
Matt came by today it was nice to see him, he brought speakers, so I now have music!
Not looking forward to the next week or two, but I guess I need to go through them to get back to my kids, hopefully for a long long time.