Homecoming

Free at last.  (yes, we did take 2 pink hospital buckets
 - they are great for soaking feet or paper mache!)

Well, I'm behind a bit again, but I came home on Saturday afternoon.  I had spent 27 days in the hospital and the time had finally come.

As anticipated, our couch felt really nice.  I have spent almost all my waking time on it since then.  We have hopes of going for a 10 minute walk outside today which would be a nice change of scene.  Now my days are boring, boring, boring.....filled with pills and naps.  A home health nurse came yesterday and will come again today to help us hook up IV magnesium....after that I think we're on our own.  Tomorrow I go in for the first of twice-weekly clinic checks, and it will be interesting to see how I am doing.

Thank you to everyone for their warm wishes and check-ins while I was in the hospital, it was so nice, even when I wasn't totally "with it"!!

Did I mention the pills?

Still working on my appetite

Coming From Behind

So...long time since last post.  It's been a rough time and I feel like I'm finally starting to rally.  Some of the things that have happened over the last week?

• I started having hallucinations from the meds I was being given (voriconazole, in particular - I am now wearing an "allergy" bracelet for it).  Hallucinating was the worst.  I thought there were people under my bed, that Nicholas was in the next room but I couldn't see him, and there was a big accident with a truck and a silver VW Beetle outside.  The worst part though was when people would tell me I was wrong.....I got kind of angry at them :)  Anyway, docs have adjusted meds and I'm of much clearer mind now!
• Lots of vomiting and other stomach issues
• They put me on oxygen because my breathing became labored.  It's been about a week now and I'm adjusting downward.
• I had a major nosebleed on Sunday morning which took two hours, three nurses, two docs and a respiratory therapist to stop.  It was probably due to my low platelet count, high blood pressure, meds.....who knows.  
• I had a skin biopsy for this rash I had over my stomach, back, and arms.  Turns out it was probably just med related, but now I have a couple stitches in my stomach to be removed.  

So now my counts are back at normal levels and doctors mentioned the possibility of my going home towards the end of the week.  I'm not counting hours or anything, but I'm extremely excited at the prospect of going home.  This morning was the first time I even felt like looking at a computer....I've been spending the days napping, staring at a wall, or chatting with my mom (who comes everyday from about 12pm-8pm).  I might even read a magazine.  And I hope to Skype with Nicholas again, it's been too long.  Some developments in Nicholas' world:  he can point to his nose, ears, feet, etc!!  He's the best!  

Finally, I wanted to say a BIG THANK YOU to everyone who did the LLS Light the Night walk and/or contributed to it.  From what I heard, it was a great experience, and from my bed here at UCSF, all the support was very touching.

Day +4

It's been a long four days since transplant.  I have constant feelings of discomfort and malaise.....all of which docs say are totally to be expected at this point.  Because of the high-dose chemo I received last week, my counts have dwindled to nothing.  I spend the majority of my days sleeping or lying in bed and staring at a wall.  I've got nausea, headaches, and over the last several nights I've also spiked a low-grade fever, which means middle-of-the-night blood cultures and xrays.  I also had a an ultrasound of my legs the other day to check for any clots (I'm not entirely sure why, as I don't think I had been exhibiting any symptoms).  So, to counteract all of my issues, I'm taking a ton of pills, some of which make me drowsy.  Which partly explains my disappearance of late!

Leah and Freddy departed this weekend and are safely home in the Peach State.  Jonathan, Nicholas and Kathy also came for a visit this weekend -- the definite highlight!

Erase Me

October 10, 2012.  My second birthday.  It's real.

This morning around 11:30am I began receiving the infusion of Leah's stem cells.  It was totally anti-climactic and I actually slept through a large portion of the "main event."  I've been so exhausted all day, probably a combination of the emotions of this day plus medication, that I have been asleep more than awake for this birthday.  Just like a newborn!

Today is momentous.  It's Day 0 of my new normal, and the first step towards a normal I once knew.  It was also Grammy's one-and-only birthday.  I'll be happy to celebrate it with her once again for many, many years.  And with Leah.....although I cannot imagine the emotions for her of this experience of ultimate charity, I wonder if it is anything like those that I felt on Nicholas' birthday? :)  There are no words to say thank you, just...none.

In addition to Leah, Freddy, and my mom, Jonathan made a break from the sick house (which is now much, much improved) and came to the hospital to support and celebrate.

A mint-chip cake from Bi-Rite Creamery to celebrate!  Then, back to sleep :)

So now I must go for what seems like my 32nd evaluation of my vitals today, then I'm sure I'll be back to la-la land!

Instant Replay

Halloween, 1982

Halloween, 1985

Game Underway

Leah, Freddy, and my mom arrived at 6:30 this morning to the Apheresis Unit (which happens to be down the hall from my room).  Freddy was able to hang out with her for a little while before they got started, and my mom headed down to the really comfy family lounge to rest her eyes.  I was still asleep.  She is now all hooked up and has had some medication to help her sleep (apparently the cells come faster if she is asleep).  We just paid a quick visit....

And now she'll be off to sleep for hopefully the next 4 or so hours, which is how long it is estimated collection will take.

Rest Day

Chemo ended yesterday so today was a "rest" day.  Although, I woke up feeling nauseous and a general sense of blah, so it wasn't really that fabulous of a day.  But we were still able to get some rest, nevertheless....

Yesterday Nancy and Lisa came to visit.  Leah and Freddy attended the SF Giants playoff game in the evening  -- a really poor showing for the previous World Series Champs.  And on Saturday, Nicholas was a very lucky boy and went to the zoo with Da Da and Nana.  He saw goats and sheep and rode a carousel!  We are still waiting for him to get over his cold so he hasn't been able to come to the hospital yet.

2nd Round Draft Picc

It was a tiring day here.  I received my second-to-last dose of Fludarabine in the morning.  In the early afternoon, my hickman catheter was still quite tender (problematically so), so after having a doc from the Interventional Radiology dept examine it, they decided it was infected and must be removed.

Bye bye oh so simple Hickman catheter

So since I was already on the table for the catheter removal, they decided to place a PICC line instead.  The downside of a picc is that it hangs from my harm, kind of like an IV, so when I'm hooked up to the IV pole I can't easily change clothes and have this annoying thing dangling from my arm.

I'm now donning a hospital gown "for ease".  

The other anxiety-provoking issue is that the last time I had a PICC (one year ago), it developed a blood clot.  So, fingers crossed.  The entire removal-placement procedure was pretty horrendous, as I was awake the entire time and after two painful attempts in my left arm, the doctors had to move over to the right.

The medical events of the day were studded by some FaceTime with home and with an appearance by the Blue Angels over the skies of San Francisco.  It was a great view from the Hem/Onc/BMT floor.

see the black smudges over the hills/GG bridge?  Blue Angels baby!

Inside the Locker (Up) Room

View from my room

Cozied up a bit

Pizza again for dinner!  Outside food is allowed until my neutrophil count falls below 1 (approx a week?)

Ball is in Play

First infusion of chemo drug Fludarabine

Thus far, things have been very uneventful.  Yesterday around 10am I received my first chemo infusion, which lasted 30 minutes.  That was it for the day!  I also received instructions that I am to shower twice daily (to rinse off chemo that is excreted through the skin).  So between showering, having vitals taken, doctor/nurse visits to my room, things stay pretty busy around here.

Today I'll receive another 30 minute chemo.  

Nicholas woke up with a cold this morning, which is disappointing because he won't be able to come visit for a while.  Kathy and Jonathan will also have to be very cautious!  

This afternoon my mom arrives and Leah and Freddy come tonight!

Kickoff

It's beginning to finally feel real.....I am currently blogging from a bed at UCSF Medical Center!  Today was a long one.  Lots of waiting.  And a hot one.  UCSF is an "historic" place, and many of the buildings are not equipped with modern air conditioning!   For real!!

The day began at 8am with bloodwork followed by an appointment with the NP.  From 10-12:30 we waited to check in to the hospital (and also waited to find out if they'd even have a bed for me today!), from 12:30-2:45 we waited for my Hickman Catheter to be placed, and from then until 5pm, Kathy and Jonathan waited for me to come out of the procedure!  Oh and I couldn't even pass the time eating since I was banned after 7am (and Kathy very graciously followed suit).  

Procedure room (with A/C)

Cheeeese (would be delicious, I am starving)

Shiny New Triple Lumen Hickman Catheter

I needed a catheter in my chest because my existing port didn't offer enough access points for the transplant.  This will remain for a few months and allows direct access to the veins, so I won't have to continuously be stuck with needles!  Hooray!

Finally, we came up to the 11th floor around 5:30pm and lounged in the solarium while my room was being cleaned.  Jonathan ran across the street and brought me the meal of my choosing!  

Here is a snapshot of my private, AIR-CONDITIONED room right after we dropped some of my things.  It is much better than I had anticipated and should become homier looking soon.  (apparently I get air conditioning because my room has a special ventilation system for transplant patients)