Happy New Year!

Nicholas making friends at AT&T today and getting his Noon Year's kiss!

Lame

I had a couple days to luxuriate in the happy news of last week before some minor issues ensued.   On Monday I started developing gastrointestinal issues, which became increasingly worse over the next couple of days.  I was admitted to the hospital on Wednesday so that they could do an endoscopy and flexoscopy to get biopsies to test for graft vs host disease (GVHD).  In the meantime, a rash developed on my hands and arms, which is also a possible indicator of GVHD.  So they took two skin biopsies too.

The worst part of this experience really was not being able to eat.  I was told no food or water from Wednesday evening until my procedure on Thursday.  I was wheeled down to Endoscopy around 3:30pm, only be told that it could not happen that day because I hadn't been prepped by the nurse.  So I thought, "Great, I'll go have a hamburger now."  No such luck -- I had been ordered to a clear liquid diet.  So after my dinner of chicken broth and lime jello, I had to fast again for the procedure again the next day.  Now, as I write this, I am happy chomping away on Grammy's Chex Mix*.

The test results won't be available until later next week, so due to the extreme nature of both issues, the doctor has started me on Prednisone.  I took my first dose yesterday and there is already a very noticeable improvement.  So, I'll be going home this afternoon and continue the steroid until I go to clinic next week.  The doctor did not want to start a steroid right away, without scientific evidence of GVHD, because it can also inhibit the new immune system from fighting against the lymphoma.  But because it will take so long for the results (because of the holiday), he really had no choice.  And this clinical evidence really points to GVHD.  

That's it for now!  Happy Holidays!

*Grammy's Chex Mix Recipe
Combine in open roaster:  (aluminum, disposable turkey pan works well.)
     1 can peanuts                 2 cups wheat chex
     2 cups pretzels               2 cups corn chex
     2 cups kix                      2 cups goldfish
     2 cups cheerios
Melt together:
     3/4 cup butter                         1 tsp. garlic salt
     1 T. worcestershire sauce          1 tsp. celery salt
Pour liquid ingredients over the dry mix...stirring as you pour.  Crisp 1 hour at 225, stirring occasionally. 

Touchdown

It's been some time since I've written, but there hasn't been a whole lot to write about.  I've been spending lots of time at home on the couch.  I've still been going to the doctor twice a week.  I had the paraflu virus (same upper respiratory virus that so many people have had), and made it through nicely.  I developed some severe achiness in my limbs and had difficulty sleeping as a result.  So, the doctor prescribed Neurontin (a drug to treat nerve pain), which has made it more manageable.  The thought is that the pain is a side effect of the antibody drug I'm receiving every 3 weeks, which is being used to try to eliminate some of the residual lymphoma while my new immune system is being ramped up.

Today I saw an opthamologist because I've been having vision issues.  She found three hematomas (broken blood vessels) behind both of my retinas.  This apparently can happen with blood cancers.  The blood vessels heal on their own (my vision has actually improved a lot over the last couple weeks), but I will have to see a retina specialist.  I'm not concerned because this actually happened to me when I was pregnant and I turned out fine.  Actually, I didn't turn out fine.....I was eventually diagnosed with Lymphoma and this was one of the first noticeable markers of the disease.  So I'd rather not think back to that episode.

Finally, in reference to the blog title, I received encouraging news tonight from my nurse practitioner.  It turns out that Leah's cells are very aggressive (what else would we expect, though?!).  UCSF did a "chimerism" test on my blood a couple weeks ago and the results are back.  All of my "hematology" (white cells and red cells), which means all the cells coming out of my bone marrow, are from the donor!  In other words, my bone marrow was successfully ablated by the high-dose chemotherapy I received in the hospital and Leah's cells successfully repopulated my bone marrow.  Since the marrow is the source of the disease, this is extremely good news.  Three cheers for Leah!!!  The transplant was a success!  Her cells went to the right place and successfully took over!  Somehow, though, Leah's cells taking charge isn't a huge surprise :)  There is still a long way to go on this, but for the present, the transplant results could not be better.

Oh and if anyone is wondering about Nicholas, he is a very active almost 15 month old.  He goes to music class, gym class, and swim class each week.  He likes to scream, stand on chairs, blow his nose, and seek attention.  His newest words are "nana" and "ho ho ho" (yet he wants absolutely nothing to do with Santa). 

Hurry Up Offense

It's been a long time since I've written.  There really hasn't been much of interest to write about (until recently).  I feel like all I am doing is sleeping, going to the doctor, and taking pills!

On Nov. 8th I had a PET Scan.  The doctor wanted to see if there was any lymphoma activity in my body post-transplant.  Normally, this is done around Day +100.  For me, it was at Day +29 because of the aggressive nature of my disease.  And aggressive it is.  There is one new area of activity and another existing area that did not disappear.  The hope, of course, was that the chemo prior to transplant would eradicate any such activity and it would stay dormant until my new immune system is ramped up enough to fight (right now my immune system is suppressed in order to avoid early graft-vs-host disease, aka rejection).  So, a bit of disappointment on Friday when we found out the news.

I immediately received an infusion of Brentuximab (SGN-35), which is the last drug I had before transplant.  This is the new antibody drug that attaches to malignant cells and theoretically kills them.  I had mixed results before so we are hoping that it works on these newly developed areas, just to keep them at bay until my new cells can launch their battle!

The next day, on Saturday, I developed some serious(ly annoying) gastrointestinal issues.  By Sunday I decided I needed to see a doctor, so we ended up at the ER.  They gave me some fluids and I had a battery of tests.  Today I was informed that I have C. Diff, an intestinal disease that I also had in the hospital (very common to get in the hospital and hard to get rid of).  So I have added another pill to my stock.

Nicholas is still great (and a genius).  He loves to climb on anything he can get his little feet on and Daddy has recently taught him Tarzan-type chest pounding.

Nicholas is happy about this unusually warm day in SF!

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)

Squash the Opposition

Today we went to a pumpkin farm in Half Moon Bay with the Gamitians.  We saw some goats, rode on a train, and picked up some pumpkins!

Goat Cheese?

Punkin Chunkin!...

Finally, We've Picked Up a First Down

This morning I had a PET/CT scan to evaluate the effects of the radiation and see if there was any new activity outside of the radiation field.  The doctor just called with a preliminary report; although the radiation area is still showing positive PET activity, that is considered ok, as it takes much longer than 2 weeks to eliminate it.  There are some active nodes popping up in my lungs, but they have been on previous scans and haven't progressed.  So.....we're proceeding with the transplant as planned.  I'll be admitted to the hospital on Tuesday for a shiny new catheter and then 5 days of chemo, a day of rest, and then transplant!  Leah will start her shots on Friday and donate on Tuesday.

J'Nicholas, Our Little Lineman

1 Year Checkup Stats:

Weight:  27lbs 1oz

Height:  32 in

Skill & Intellect:  Genius :)  

How much do I weigh, Doc?

I just had a big snack, please keep that in mind....