Day 8: Ladies and Gentleman, we have cells.

Before we get to the cells, let me fill you on what’s been going on.   Oh, by the way, it’s Brett again.  I think it was on Day 4 when the attending Dr. told Jessie, “Every good day, is one less bad day.”  We couldn’t really appreciate his sentiment at the time, but now fully understand.  The last few days have been rough on Jessie.  First, there is pain associated with her mucositis, which is primarily in her throat and makes it difficult and painful to swallow.  To treat her pain, they give her dilaudid.  The dilaudid works well for the pain, but contributes to her already existing nausea.  So to treat the nausea, they give her zofran on a regular basis and compazine and ativan as needed, which she does often need.  The nausea drugs make her very drowsy, which is compounded by the Benadryl that they have to give her as a premedication to her daily platelet transfusion.  This is a long way of saying that Jessie is in and out of sleep most of the day and a bit weary even when awake.  And, due to the nausea and pain from swallowing, Jessie is now on intravenous nutrition. 

In addition to the mucositis and nausea, two days ago Jessie spiked a fever, which is fairly common, but could mean that Jessie has an infection, so they load her full of antibiotics and culture her blood to check.  The fever could also mean that the blood from the two transplanted cords are “duking it out” inside her to see which one can set up shop and create her new immune system.  This is known as engraftment syndrome.  Although it doesn’t appear to be an infection based on the cultures, last night her fever was above 103, which made for a rough night.  This morning her temp was back down in the 99s.  Let’s hope it stays there.

“Look for the cells coming at first light on the 8^th day.  At dawn, look to the east.”  Well, that’s not exactly what Gandalf said, but close enough.  So this morning we received the good news that Jessie has cells!!!  Yesterday her white blood cell counts and neutrophils were at <0.  Today her white blood cells were 220 and her neutrophils were 190.  So, this means that Jessie’s body should be in recovery mode.  The new cells are almost certainly from the expanded cord unit which is designed to help Jessie get through this rough period while the other transplant cord units do their thing.  That bit of news provided Jessie with a needed pick-me-up.  So, hopefully, in a few days I can return the blog to its rightful owner and you can once again be treated to blogs that are much more entertaining and contain far fewer Lord of the Rings references.  Until then, adios!

Day 3: Forecast - Fatigue with a chance of Mucositis

Guest blogger, Brett here.  In between a lot of sleeping today, Jessie rolled over in her hospital bed and said, “Will you update my blog?”  So here I am.  Today is Day 3.  Jessie received her transplant on Day 0.  The transplant involved two “matched” units of blood harvested from umbilical cords at noon and a unit of 300 million stem cells four hours later, which is much smaller that you would think and looks like watered down orange juice.  The actual transplant is uneventful; they just hang the units and attach them to Jessie’s intravenous Hickman line.  A nurse takes her vital signs every 15 minutes and monitors for adverse reactions.  Luckily, Jessie had none. 

This is what 300 million stem cells look like.

To avoid the awkwardness of simply staring at Jessie in her hospital bed, super friend and new Seattle local, Jen Hunter, threw a small birthday party during Jessie’s transplant to welcome the new cells.  Our parents, who are both visiting, were treated to red velvet cake, alcohol-free champagne, and birthday hats.   The doctor, who is overseeing Jessie’s clinical trial and jokingly refers to Jessie as Patient #1, came by later to witness the infusion of the stem cells.  Meanwhile, two doors down, Leukemia Celebrity and Yale Hockey player, Mandi Schwartz, received her long awaited transplant on the same day as Jessie and was written up in the New York Times.  

Flash forward to today; Jessie has fared fairly well under the circumstances.  She is at rock bottom in terms of her blood counts and is experiencing some of the typical side effects of the chemo and radiation: nausea, fatigue, and other stomach-related side effects that I will leave to your imagination.  The horrible mouth-sores, known as mucositis, haven’t come yet, but are likely inevitable.  Despite all this, Jessie has been walking the halls every morning for exercise and is keeping her spirits high.  Sometime in the next two weeks, those magic baby cells should start taking hold and producing a brand new immune system for Jessie.  Let’s hope it’s sooner than later. 

Edge of the cliff

What to say on day 0?  I've managed to be mostly very rah rah shish koom bah about the whole thing up until now, but please indulge me my small minute of melancholy.  Last night it hit me that I am on the edge of a cliff.  It wasn't a good feeling.  I've destroyed my marrow and blood cells to the point that I can't regenerate them again myself, most likely.  So technically, I'm already dead unless these new cells save me.  And they will.  Save me, I mean.  But that is why a lot of people refer to their transplant day as their new birthday.  You are quite literally born all over again, you get another chance at life.  So there is some magnitude to this day.

My old immune system did a really good job for me up until now.  I hate to let it go entirely, but mostly I'll just be grateful I had it get me this far.  I welcome the new baby cells, and since we'll be starting over immune-wise, we have a lot of work to do together.  So while I do still feel like I'm on the edge of a cliff here, I'm feeling pretty good today.  I'm pretty ready to jump.

The Fall Guy

For total body irriadition, all you really do is stand there in front of the radiation beam and not freak out.  You are supplied with a plexiglass box with handholds and a bike seat to slump on if you get tired of standing.  In my case, 4 beams of low-intensity radiation are are shined my way sequentially; each beam lasts 4 minutes and 2 are shined at the front, then I turn, and 2 are shined on the other side.  On the front side, I am entertained by looking into the beam-emitter, a glass orb/eye thing about the size of a basketball set in a giant mechanized arm thing right out of a 1960s spy movie.  On the back side, I am absorbed in a "Where's Waldo" poster taped to the wall.  Music plays in the background.  It's not even like I'm naked or anything...I do wear a robe.  Sounds pretty chill, doesn't it?

Well, not for Make-It-Hard-on-Yourself-Girl over here.  I fainted dead away half-way through the first beam of my first treatment, slumping off to the side of my plexiglass box, leading of course, with my head, which produced a giant THUNK that alarmed the rad-oncology team.  So of course they all came to my aid and lay me down on the floor with crackers and juice until my proper blood pressure returned and we were able to carry on.  But that is how I began my TBI process, and thought I would share it with you.

Now, the rest of my sessions have gone fine; I have 8 total (2 each day) and I've done 6 of them.  But nevertheless, l come back upstairs to this having been posted on my door:

Yes, it is a little icon of a dude falling dramatically to the ground and is intended to indicate that I, Jessie, am now a falling risk as far as the nurses are concerned.  I am completely. humiliated.

Anyhoo, that's what's going on.  A lot of feeling fairly crappy or feeling okay I guess or feeling awful. A little bit of yacking, but minor so far. The TBI causes swelling of the parotid glands (salivary glands).  Its a rare and painful side effect but one that I've been lucky enough to have had the pleasure to experience.  So this is what mumps is like!  Glad we have a vaccine.  Oh, wait, I won't for another year and a half.

In transplant speak, were are at day -2.  Transplant is day after tomorrow.
love, jess

What's goin on

What if that terse Facebook status update was all I wrote about beginning transplant?  Wouldn't you be pissed?  Don't worry, I've a couple of things to say about officially starting the process.
 
The first thing I want to say will only speak to Monty Python fans.  The rest of you can tune in later.  So you remember the scene in the Holy Grail where Lancelot and another guy are storming that castle with the wailing "Princess," and the 2 guards are watching?  And every time they flash between the guards and the knights, the guards are squinting off in the distance kind of confused, and the knights aren't getting any closer and are even getting maybe further until suddenly the knights are right on the guards fighting and the guards are just totally shocked even though its been going on for quite some time?  Well, that's kind of how this transplant has come up on me.  I've been watching it coming since, no joke, the day I was diagnosed (I was so angry at the doctor that suggested it I could barely be in the same room as her for 3 months or so.  I'm over it, by the way, and have made my peace with that doctor).  But now that I'm here in the hospital, it just feels surreal.  Like it is still way off in the distance from here.  So, guaranteed it will hit me like 2 medieval knights with axes, I guess.  Probably worse.

I checked into the hospital at UW yesterday.  My room is pretty basic and smallish but has a great view of Lake Washington and you can see Mt. Rainier when the clouds part.  The food is all room service style, which means I have a menu and I just call down what I want when I want it.  It's fantastic!  Tonight I had local salmon with cranberry vinagrette sauce.  Sorry UCDMC, but this beats the Turkey Chili Mac or chicken strips and fries.  I started the first chemo yesterday, which the doctor said should be "like water to someone who's had the chemo you've had."  I never was a big fan of drinking water, so sure.  It was certainly uneventful, but from the files of "Its always f-ing something" I pulled a delayed side effect from the intra-thecal chemotherapy I got a week ago to hit me today.  To prevent inflammation of spinal and brain tissue, you may remember I was on a short course of steroids to avoid headache and backache.  Well, that rx ran out on Sunday, so the aches chose my uneventful-like-water chemo day to flare up LIKE CRAZY.  I mean, I can hardly walk at times.  I had to resort to the dreaded oxycontin for painkillers as the only thing that works (I can't take steroids and potentially mess with the new immune system that's going to want to set up shop soon, I hope!).  I'm disappointed, as I hate being on continuous painkillers so early, but what are you going to do.  I still managed to do 30 minutes of walking laps on the the floor yesterday and today.  Luna came to visit and as always, lit up my day a little, and managed not to reprogram my I.V. pump.

However, today they started my second chemo which is probably one of the more gnarly ones I've had.  It's called Cytoxan.  They don't even try to hide the toxicity in a clever name.  "Let's call it Toxopoison!"  So right now, I'm feeling pretty nauseous, which is unusual for me.  Why, hello again, salmon with cranberry vinagrette.  On top of the aches (which my neuro-onc wrote to me, "will END, Jessica" when I emailed him in despair), and the 10 lbs of fluids they loaded me up with to flush this toxic sludge (which I do not disrespect, it is saving my life, as it were) I am winding down quickly tonight.  Tomorrow I have more of the same, then a day of rest, then we begin radiation.  We'll see how I'm able to report on all that.

Love and love to all, thinking about and missing everyone.
j

Vacation, indeed

I apologize for the long blog silence.  It had nothing to do with my waiting to find out if I had a brain tumor this time, you'll be happy to know.  At least I hope you'd be happy to know that.  The truth of the matter is that we've been really busy.  With my immune system kicked up a notch, and a 4-day break from clinic visits, and with what might be the last sunny warm days we ever see here, we have been all over our little corner of Seattle for a few days.  Aquarium, zoo, the strangely interesting Ballard Locks, a fish hatchery (the Chinook salmon are spawning.  Luna swears they are sharks; she refuses to call them salmon), some random drives around town, going up in the Space Needle...that sort of stuff.  Been walking a lot and getting lots of exercise.  Seattle is a be-yoo-ti-ful city, and it seems like everywhere you go there are a lot of windows to gaze out of.  Especially this apartment.  So I also have been doing a lot of that: gazing out windows at Seattle.

Luna gazes a lot, too.

Getting ready to go to the park.

From our balcony

Agua Verde with Rosa and Jen (Hipstamatic iPhone app pic- fun!)

Chinook salmon in a fish ladder.  Luna being where she shouldn't.

We are also rediscovering cable TV, so I spent the last few nights watching Hoarders, Ghost Hunters, and Project Runway.  I'd like to say I've been doing more spiritual, meaningful preparation, but basking in relative normalcy (or base mediocrity perhaps) is the most enjoyable thing I've done in 6 months.  I even have normal-ish hair for the moment.  It doesn't look like my old hair though, it's kind of lighter brown with just a tiny bit of curl.  It's sort of 80's Jamie Lee Curtis.  But, it will all fall out again soon so it will be awhile until I finally find out what it is going to look like.

Hi.

Luna and I at the hatchery

Speaking of hair loss and what-all, here's what's been going on, medically-speaking.  First, I had my intra-thecal chemo injection last week (chemo into my head port).  For those of you who remember how that used to be for me (where I was a retching, quivering mess for 2 hours during and after the injection, then I would sleep for 5 hours), this one was totally different.  I took my meds, walked in, had the injection in a matter of minutes, and walked out.  It was a slightly different chemo formulation, but man!  I have had a few headaches and backaches from inflammation of the tissues which is normal, but the good doc has me on some steroids that help.  They also cause my white blood cell counts to shoot to the moon: WBC are 10 and ANC is 9800 or something!  So I'm temporarily super-immune (the docs say it doesn't exactly work that way, but what do they know).

I had my data review session with my team of doctors yesterday, and we went over the findings of all my tests.  Fine, fine and fine was the gist of it.  I'm scheduled to start pre-transplant conditioning chemo on Tuesday.  I will have 3 days of chemo, a day of rest, then 4 days of total body irradiation (TBI, 2 20-minute sessions a day), then I'll receive my new cells on September 22.  Things will get fairly physically challenging from there as my counts drop and I fall apart until the new cells take over, so I might be passing the keys to the blog to Brett occasionally to keep you updated when I am lying around drugged up and feeling sorry for myself.  Today, I had surgery to have my new Hickman port put in by a very nice doctor that has the same birthday as I do.  This port is in my chest and is wider than my old PICC line (that was in my arm) in order to accommodate the more viscous stem cells.  It's also supposed to be less susceptible to infection and in general, easier to take care of.

The Hickman line...the coils are on the outside for access, the part between lower ribs and clavicle run under my skin and my skin is sealed to the catheter at the top, and the near the clavicle past the seal, the catheter is inserted into my jugular vein where it feeds down into my superior vena cava.  If that's confusing, look it up on Wikipedia or something.

But right now it hurts.  Its been so long since I've had a procedure that hurts that I almost forgot what it's like.  So I'm feeling a little unprepared for what is to come, which I recall from my induction involved quite a bit of this "hurting" thing.  Although for now I am also strangely calm. Most likely that is from the boatloads of good thoughts I've been receiving from the amazing people I've managed to surround myself with over the years.  Thank you so much!!   I'm looking forward to some more visits from friends and family soon, and just moving forward finally!

I will be in touch soon (especially if nothing is on TV- ha).  Have a great weekend everybody.  Sending lots of love to all,
jess

Head like a hole

I'm back already to share some good news as a result of some tests last week that gave me the heebie jeebies so much that I didn't really want to share them with anyone until I knew what they actually meant.

So let me back up a little bit...last Tuesday, while listening to U2's greatest hits on all-plastic headphones, I had a brain MRI just to establish baseline conditions of my Ommaya port and all that.  Then on Friday, I get a call scheduling a last-minute appointment with a neuro-oncologist at 4:30 p.m to review my MRI results.  The neuro sits me down and shows me on the MRI how the neurosurgeons that installed my Ommaya first put the catheter one way through my brain, then another way, leaving a small hole IN MY BRAIN in the first location "that doesn't mean much of anything for you, it's just interesting," according to the neuronc.  But it kind of meant a lot to me, what with how long it took me to remember the name of the show "Twin Peaks" the other day, until he said: "But what I'm really concerned about is this."  And he showed me this little bright round spot, at the base of my pituitary stalk, which is right below the pituitary gland.  Then I found something else to worry about.

"Well, what is it?"  we asked.  "Well, I don't know," said the doc.  "Is it more leukemia (it sometime organizes itself into masses called chloromas)?" we asked.  "Well, that would be unlikely given your treatment," said the doc.  "Then what does it mean?" "Gee, I don't know."  Seriously, this is how the conversation went.  He never even ventured a guess, just kept looking from the bright spot to me with bewilderment.  Finally he clapped his hands to his knees and said, "Well, I wouldn't put all my money on a bet against cancer.  I'm going to need a more detailed look at this."  So he scheduled me for another MRI next (this) week.  "Have a good weekend!"  he said.  I could imagine how carefree and awesome my weekend would be, with this fantastic uncertainty sitting at the back of my twice-punctured mind.  But I decided to save the hysterics for after he had his closer look and could give me a reasonably doctor-like diagnosis, and I did have a great weekend actually.

After the second MRI (Amy Winehouse on the headphones this time), I met with my team on Tuesday (my PA, attending MD, and RN) and they hadn't heard anything from neuro yet.  Apparently, he was going to have a conference with his department on Wednesday to decide what it was.  But from my team's perspective, if the lesion was anything but benign, I would have to do like 5 days of cranial radiation in addition to body irradiation.  Bleh.  That was on top of the news that I am a leper and a typhoid Mary.

But as they sometimes do, things turned around some today, and in my follow-up appointment with the neuro-oncologist he came in and said, "Good news!  It's a perfectly normal variant."  Translation: it's just how I'm built, with a little thing on my pituitary stalk.  I've heard the word "normal" so rarely in the course of this disease I almost fell off my chair.  He continued, "also, I would not recommend cranial radiation for this or for your CNS (central nervous system) disease (remember, I once had leukemia in my cerebral spinal fluid, hence the Ommaya port).  Just one more injection of chemo instead."  I never thought I'd live a life in which that was the best news I'd heard in a week, but it was.

So I got on the horn to the RN on my team to see what else was new.  She had heard the good news, and also informed me that all my counts are up, and my neutrophil count is up to 1650.  Finally!  Not normal range yet, but getting a lot further from neutropenia.  She ALSO told me that my virus test came back negative, so I am no longer a total isolation patient, and I can ride the Hutch shuttles again (did I mention I had also been banned from the shuttles?  The humiliation!) which is good since I have appointments at University of Washington Med Center today.

So that's what I've been sitting on for the past while, which is also probably why I didn't blog.  Either that, or I'm lazy as ever.  Yes, I guess mostly the second one.

Happy Thursday,
jq

The occasional blog is back!

I was going to write last night, but Brett and Jo made me watch Forgetting Sarah Marshall instead.

We moved into the new apartment and it. is. awesome.  It's big, bright, and has views of downtown and the Seattle Center (where the Space Needle is) and a great wrap-around balcony.  There is also this amazing rooftop tranquility garden, where you can go sit in the rain and wind and freeze to death.  No, seriously, it has been sunny and gorgeous almost all the time since we've been here.  In fact, since I am not as sun-hearty as I once was, what with being on antibiotics and skin sensitivity from the chemo, I'm grateful for the occasional cloudy day when I don't have to wear my hat and slather on sunscreen.  And we've been out and about quite a bit, especially when Rosa was visiting and filling us full of tamales at Jen and Mike's place (or nearly asphyxiating us all with the tamale preparation).

We're slowly circling in on a transplant date; but I know the minute I declare it, they'll change it.  So let's just say it's soonish.  In the meanwhile, I've managed to become the pariah of the Hutchinson Center in 2 ways.  First, my bacterial cultures indicate that I have somehow managed to get myself colonized with Vancomycin-resistant enterococci (VRE), which is basically a bacteria that is resistant to the most-used antibiotic in transplants.  Enterococci are one of the usual hangers-on in one's bowels, however they can cause infection if they start to wander beyond the bowel to surgical sites, wounds, urinary tracts or the bloodstream.  There are other antibiotics to use for them if they infect me during transplant, and we have that red flag, if you will.  But although I am not sick from VRE, I can in the meanwhile still potentially spread it to another immunosuppressed patient at the Hutch via one of the 200 doctors that prod at me every day.  To prevent this, all my doctors have to get into gowns, gloves and masks when they examine me.  It's awkward for everyone involved, as the situation has this faint leprosy-esque ring to it.

The second thing is, I've contracted Luna's lousy virus.  It's not the most miserable cold I've had, but it's still bad enough that my doctors are like, "You're gross.  Put a mask on."  So until they determine what type of virus I have, I am officially referred to as an Isolation Patient.  Meaning I have to wear a mask in the clinic (while I'm in the coughing and sneezing phase, which I am--despite my lung-exploding efforts to hold them in) and I have to sit in this little glassed-in area with a sign that says "Isolation Patients" that all the waiting rooms have when I'm waiting for an appointment.  No recliners and Lake Union views for Typhoid Mary.  My doctors were not as annoyed with me as I thought they'd be, as I will probably get over it before the transplant chemo begins.  "Otherwise," they remind me sternly, "it can lead to pneumonia!"  It's always something with them.  Anyway, the only high point of that day was my physical therapist telling me that I officially have the most flexible shoulders of all her patients.  Of course, she had to say it through a mask and face shield.

Today, I got my PICC line pulled (that would be my peripherally-inserted central catheter for you jargon-y types).  I've had this thing installed in my arm since late April.  I'll have to get a new line for transplant (into my chest), so my nurse asked if I'd like a cyborg-free couple of weeks and I said HECK YES.  When I went in to have it pulled today, I was a little tense.  What if my vein had completely attached to it and came out when they pulled on the line, possibly pulling all the tributary veins with it and maybe even my heart which might wind up in my shoulder or something?  My hypothesized scenario was reinforced when the nurse doing the removal settled down, tugged on the PICC a couple of times, and met resistance.  She told me to quit watching what she was doing and I might relax more.  So I looked at Brett and we started talking about Puerto Rico and darned if the whole thing didn't slide right out.  Now I just have a small bandage over the hole in my arm, and tomorrow I'll be free of that too.  But I was pretty impressed to see my vasoconstriction in action, further illustrating the physical effects of anxiety.  Also further illustrating the necessity of my Ativan prescription.

Hope all is well in your world.  I'll include some pictures of this merry-go-round we have going on up here in the next blog, probably.

Love, jess