I've engrafted!

My stem cells have engrafted.  Praise God!  This means I'm no longer neutropenic (when you don't have enough stem cells to fight off infection).  As a result, they disconnected me from the fanny pack of hydration that I had to carry around everyone.  Additionally, I no longer have daily trips to Stanford.  My next appointment is on Wednesday where they will remove my catheter if my platelets are high enough.  

They say that while I have a functional immune system, it's very young, like a baby's.  I'm still on the low microbial diet for another ~20 days, but it should mean that the worst of things is over.

God is good!

Post Transplant Day 9

Just a quick update - I'm still neutropenic, meaning I'm still at risk of not being able to fight off infections.  My white blood cell counts turned up today though, so hopefully in the next few days I'll be on the mends.  They also said that next week I might be able to switch to MWF appointments instead of daily appointments.  Fingers crossed!

Healthwise I still feel pretty good.  The sores on my head are getting better, and my stomach - while still unsettled - isn't causing me intense pain.  Praise God!

Day 5 Post Transplant

Hi friends,

I know many of you have been wondering how the transplant has gone.  Sorry for the lack of posting; I can't seem to concentrate on anything for too long, and writing down thoughts seemed to be a laborious task.

To recap:

• Last week I spent a night in the hospital for BCNU chemo treatment.  I had my own room in the hospital, which was awesome.  My buddy, Jon, also visited me as his mom was getting treated at Stanford that same day.  The treatment itself wasn't too bad.  I was a little light headed, but it was pretty uneventful.  The hardest part was not being able to sleep well.  Oh, and there was the awkward part of having two nurses inspect my whole body for skin issues.
• A couple of days later, I came in for Melphalan (mustard gas) chemo treatment.  For that treatment, they had me sucking on ice while the medicine was being infused.  Apparently it limits blood going into the mouth which means the medicine doesn't collect there.  Melphalan is known to cause mouth sores, so the ice aims to reduce the mouth pain I'll be in in the days to come.
• This past Monday, I had my transplant.  The transplant itself was pretty anticlimactic.  They gave me some premeds (benadryl) to make sure I didn't have an allergic reaction to the preservative.  They then thawed my collected stem cells and sent it through my catheter.  They gave me mints to suck on because apparently the preservative tastes and smells of creamed corn.  (Jenn and I didn't notice, but nurses that walked by kept commenting on it.)

So what's happening now?  I'm waiting for my white blood cells / red blood cells / platelets to bottom out (reach zero).  Usually at that point, the stem cells we re-infused will engraft and those numbers will recover.  I'm told I'll feel progressively worse as those numbers go down to zero.

I know people wonder how I'm feeling.  Let me say off the bat that I'm doing really well and God has been answering prayers.  The nurses are really impressed with how well I'm doing.  I thank God for sustaining me thus far.  With all that being said, there have been side effects I'm dealing with.  I'll list them below, but know that I'm not complaining or suffering terribly.  Of note, I haven't had to deal with nausea/vomiting so far - praise God!

In increasing order of annoyance:

• Frequent urination (they hook me up to hydration fluids until my stem cells engraft.  I also drink a lot to preserve kidney function.)
• Light-headedness / tiredness (I feel a bit of the tiredness/fatigue I'm told to expect, but so far it hasn't been overwhelming.  Oddly, urinating is something that makes me tired / short of breath.  Still, I'm able to take daily walks, which I'm grateful for.)
• Decreased appetite / weight loss (I've lost roughly ten pounds over the past week or so, but the number isn't as bad as it seems.  At my peak, I had several pounds of water weight as they were loading me up with four liters of liquid a day.  I had also been trying to put on weight before the transplant knowing I'd lose some.  All that being said, I'm a couple of pounds below my average weight, which isn't terrible.  The appetite comes and goes, but I have some Ensure to help with the nutrition when I'm not hungry.)
• Mental cloudiness (I can't seem to concentrate on anything for too long.  I have to read the same paragraph multiple times to figure out what something is saying)
• Skin issues (I'm having some skin issues - a rash behind my ear, some acne popping up, a rash on my head.  These are all expected to clear up as my white blood cells rebound.  Still, I do look pretty gross right now.)
• Stomach pain (to date, the stomach pains have been the worst part of the transplant process.  My doctors think it's acid reflux, and yesterday they prescribed some additional medication which should help control it.  The pain luckily doesn't last very long, but it's often 10-15 minutes of really intense pain.  It seems to happen in the early mornings and sometimes after eating.)

Anyway, my apologies again for the infrequent updates, but I'm still alive and kicking.  I haven't been able to binge read/watch/play anything in particular, but I'm still grateful for that health that I currently enjoy.  Jenn has also been amazing in faithfully driving me to Stanford every day (the drive home from Stanford has been taking 1.5 hours every day). I'm also grateful for all the prayers, emails, texts, and thoughts being sent my way.  

Melphalan done!

The Melphalan (mustard gas) was pretty uneventful.  I had suck on ice chips for an hour which will hopefully prevent mouth sores.  Michelle from my church mixed the drugs (she does oncology pharmacy at Stanford), so it was nice seeing a friendly face.  It looks like we're still on track for transplant on Monday.  Praise God for everything going so smoothly so far.

Discharged!

So yesterday's overnight stay at Stanford was pretty uneventful.  I got admitted at 2 in the afternoon.  They put me on hydration fluids for four hours to make sure the BCNU drug would constantly be flushed from my system via frequent urination.  At around 10pm they started the BCNU drug.  Praise God, I didn't feel any of the facial pain / intense headaches they described.  Rather, it felt more like a warm buzz / fogginess similar to how I feel after drinking wine.

Sleeping at the hospital is a bit challenging.  The nurses came in every couple of hours to check my vitals.  At 4am, the fire alarms went off for 10 minutes.  I also didn't know how to turn off the lights in the room, but I asked the nurse at 5am when she checked in on me.  Apparently the room was also set to 60 degrees, and I didn't know I could request to turn it up.  It wasn't until a new nurse came in shivering did the thermostat get adjusted.  It wasn't all bad though; I had my own room which was a huge blessing.  Also, my buddy Jon visited as his mom had an appointment at Stanford at the same time.

Anyway, they sent me home with the rolling backpack filled with 4 liters of hydration fluids.  They'll be sending roughly four liters of fluid through my body for the next three days or so.  I can't wait to see how much water weight I put on.  :)

Tomorrow I'll be doing the Melphalan drug.  It should be a two hour infusion which most people tolerate pretty well.  However, several days after the Melphalan, I should feel like I've "been hit by a truck", according to my nurse.  We'll see how it goes.

Today's nurse again said I'm an extreme case of handling treatment really well.  I told her I felt totally normal this morning and that I could probably go for a jog if I wanted.  She said that most people are pretty run down after the BCNU.  I think this is a huge answer to everyone's prayers, so thanks for faithfully upholding me.  Keep 'em coming.  :)

-b

Last day of freedom

Hello, friends!  I went to Stanford on Monday for an xray, blood test, and a meeting with my doctor / nurse coordinator.  Praise God, the x-ray and blood tests all look good.  The doctor and nurse talked me through what would come next.  I'll be going for an overnight stay at the Stanford hospital on Thursday for BCNU treatment.  They want me overnight there because it can sometimes cause severe pain, especially in the head/face.  It only lasts while the treatment is going on (3-4 hours), but they want you at the hospital so they can administer pain meds if necessary.  The next day I'll be discharged with a rolling backpack full of IV fluids which I'll have to keep with me for the next day or two.  On Saturday I go into the hospital for Melphalan (a derivative of mustard gas).  Apparently that medication is usually handled well, but they'll have me suck on ice to prevent (or minimize) mouth sores.  If all goes well, I'm still on track for my transplant on Monday!

So, tomorrow marks my last day of freedom before the health precautions kick in.  I'm grateful for these past two weeks of being able to go outside, eat out, run errands, visit friends ... it will definitely be challenging not being able to have the windows open, not being able to eat out, having to wear a mask whenever I go outside.  Still, God has been incredibly gracious to me.  I'm thankful that I'll get to be at home while recovering from the transplant instead of at the hospital.  I'm grateful that Jenn has gotten to take time off  to be my caretaker.  I'm blessed that Google has an awesome short term medical leave policy.

Onward!

-b

Thank you!

Someone bought me a beanie, but I'm not sure who (there wasn't an invoice / note).  If it was you, my bald head and I thank you!