Lost and Found

First thing's first. THANK YOU. For the cards and the emails and the Facebook messages. For basically exhausting that Amazon wish-list that Jonathan set up. There were quite a few anonymous gifts too-- including an expensive massage device!-- for which I cannot extend my gratitude to the giver directly. Please take this general thank you message to be directed at all of you who make mail-time the best time of the day. I am humbled and, not to mention, so excited to read all these books, listen to all the music, and massage my neuropathy-ridden feet throughout this convalescing period.

Day +29 Post-Transplant. Physically, not too much to report: eating is good, digestion is finicky, skin is itchy and rashy, body is tired. Working hard to drink the recommended 3 liters of fluid per day, but failing daily (trying to flush the kidneys to prevent them from getting these bloody sores). Also failing frequently at getting out and taking walks, mostly because I detest wearing my mask. Enjoying a few visitors. Taking lots of medications.

But mostly, what I'm doing, between all of this other stuff, is.... watching Lost. I'm not really sure what's going on with the fires in the Santa Cruz mountains, but I sure know about the fire that Walt set to the first raft because he didn't want to leave the island. I have one ear open to campaign trail (btw, Jaci got to shake the man's hand in San Juan, Puerto Rico, last weekend; she reported that although the day was stifling and he'd just given a riveting speech, his handshake was cool and soft), but my other ear is firmly planted on the little clues that Ben gives away about where his people came from and why they prefer to live in the barracks on the island. My heart goes out to the victims of all the calamities in China and Myanmar, but a piece of my heart is reserved solely for the sexy Sayid, the ex-Iraqi communications agent who is smart, strong, and always knows how to find the truth. Why he fell for the spoiled Shannon, I'll never understand.

Ahem. Sorry about that. My life is pretty simple right now- lots of Lost. I'm jamming through Season 3 right now and am a little nervous for what I'm going to do with this addiction when I reach the show's current place in Season 4. I get the shakes just thinking about it.

the breakout

I offered my attending physician to cook her and her husband a romantic meal of their choice. I offered to compose her a song in whatever genre of music she most favored. Then I just flat laid out all the most cogent reasons I could summon of why I should, please, please, go home as early as possible. Not sure which worked, if any, but word on the ward of my bargaining seemed to reveal that she has a funny bone and, well I figure, if I was well enough to cajole and create, maybe I was well enough to leave.

Ahhhh. So, on Sunday afternoon, day 19, I was freed from my prison. It really had grown to feel like an incarceration from freedoms that would bring both health and happiness, such as restful nights' sleeps and diverse healthy meals, so I couldn't be happier to be out of there.  I feel very blessed to have recovered at such a rapid rate without any dangerous complications. 

Then, another boon. I was told to expect to return twice daily to the hospital to be tested and to receive any necessary transfusions and medications. [While I was considering the economic value of possibly trading in our car for a Prius for all of the expected driving, even commuting trice daily didn't seem to compare to the discomforts and indignities of living there.] However, today, I was taught how to administer a certain drug at home and- get this- my new schedule is Monday, Wednesday, Friday mornings. Total. I cannot believe this unexpected extension of freedom.

While I am home and feel very liberated, I am, of course, still super restricted. My diet is still low-microbial (but my Mama's food is phenomenal even so); I have to wear that pink Darth Vader mask if I even step out of our apartment; and cleanliness and symptom maintenance are still paramount. They say there is a 90% chance that I'll be back in the hospital at some point for a fever, a rash, or other potentially more-grave-than-it-sounds setback. Still, I am so happy to be OUT for now and hope that I can take care of myself enough to steer well clear of the hospital for as long as possible. 

Lordy, there is no place like home.

Boo Rules

Day 15 - Erica’s WBC count continues to slowly rise to 1.7 (although her ANC dropped to 500—totally normal to fluctuate at this point) and her platelets are up to 48K. She is definitely more alert today during her waking moments but continues to nap periodically throughout the day. She stopped her last antibiotic today making her a bit closer to the goal of being homebound. But, her appetite is still not quite there… Until she can get off her nutrition IV, she will need to remain here, a thought that literally brings her to tears.

Since not much has changed, I thought I would take advantage of this blog entry to tell everyone about her new life for the next two and a half months. We’ve thrown around the terms “rules” and “restrictions” and “limitations”, but never quite elaborated on these. So let’s start with dietary restrictions: Erica is not allowed dairy until the docs say it is ok to slowly reintroduce to her body. She enjoys soy products though! Oddly, and rather counterintuitively, she is not allowed any fresh fruits or vegetables. Everything has to be processed and consumed hot to kill any bacteria that may be lingering on the food. Most people never notice if a piece of lettuce in their salad actually had some bacteria on it since we have fully functional immune systems that cover us, not so for E. During this time period, no restaurants at all which will put our Mom to work in the kitchen at home! I must admit though, lucky Erica! Mama can definitely hold her own in there.

Many of you know that while she’s in the hospital, all docs, nurses, and visitors are obliged to don masks and smocks at all times to prevent airborne germs. At home, her counts will be higher than they are now, so (usually) masks will not be required. Again, visitors are not encouraged during these two and a half months. Needless to say, she HATES this. And I’m sure many of you have received groggy nighttime phone calls from E saying how desperate she is for you to come visit her and force you to promise to hop on the next flight out to SFO. I’m asking you to please ignore her requests… Understand that for now, the best thing for her is minimal exposure to multiple people’s germs and bacteria. I know this sounds harsh to ask you to not visit and to even ignore her begging you to come, but do realize that you’re helping her more by staying away for a couple of months. So gently make up an excuse but be kind to her… She is really eager to rejoin society and for anyone who knows E personally, you know that she is not one to sit around and vegetate for long! Even those of us who will come in contact with her during this time, know that the doctors said not to be with her for many hours straight sharing her air. Take a walk, go to the store, or make up an excuse to leave for a while…

Probably she’ll read this blog soon, and angrily remove it. So commit it to memory! Take away from it that the best help you can give Erica right now is lots of emails, cards, phone calls, and Skyping. I’m sorry to spoil people’s plans to come visit, but just postpone it until August—besides SF is perfect in the late summer. J

Thanks for understanding… I’ll blog again soon, hopefully about some good news!

...getting closer...

It’s funny how a day can get away from you when all you’re doing is watching your sister sleep and slipping through pages in a magazine… sorry for not posting yesterday.

Her counts have been following their rising pattern getting her ANC to 600! This meant that yesterday was the first day since her BMT that she was able to venture outside her room. We strolled around the nursing stations and circled the floor a total of three times yesterday—slight liberation, but one step closer nonetheless.

She is still a bit loopy from her meds although they are lessening her dosages one by one. Ideally, she will be more coherent and even start eating. Since she straight-up refuses to eat the food at Stanford Hospital, I am home making spaghetti… (funny side story: as a nurse was walking out of the room yesterday, she asks Erica, “Is there anything else I can get for you?” and she says, “How’s your spaghetti?” The nurse is utterly confused by the question, so Erica follows up with “You make a good spaghetti sauce.” My mom and I can’t help but laugh at the confusion… Nurse: “I do?” Erica: “Yea.” Nurse: “uhm.. [looks to Mom and I for support, we offer none.] I make good spaghetti?” Erica: “Yea.” She seems slightly flattered but unsure how her patient would know her culinary abilities… Finally, we step up and interject that we will be happy to make Erica spaghetti and Flustered Nurse exits.) So, I’m home making spaghetti.

In order to break out of E131, Erica needs her counts to be higher, to be able to eat sufficiently, and no longer require IV pain medication. It is so good to hear that her counts are rising meaning her new marrow engrafted!! So now, we wait….

When I get to the hospital, I will report on today’s counts and let you know how much closer we are to having her out of the hospital and back home…

p.s. E loves to check emails, even if she doesn't always respond back! So, blow up her inbox!

Humbling

I finally made it to Stanford to be with Erica, but according to my mom, today is the most “out-of-it” she’s been for the past week or so, special thanks to the mix of Ativan, Dilaudid, and Benadryl. As previously reported, she has moments of lucidity (I’m talking 30 seconds to a couple of minutes) but then falls back asleep for about 30 minutes.

For those of you who follow the medical speak, her WBC is 1.1 today, HCT is 30.3, PLT is 10K , and the ANC is 450. To translate for everyone else: WOOHOO! Progress! Basically, the docs hope that tomorrow she will be able to leave her room (donning a heavy duty mask of course) and there is even talk of her being able to come home this weekend or early next week. This is contingent upon whether she can swallow food and keep it down long enough to get nutrition. As of today, Erica tried to eat small bites of various foods, but the pain to swallow was too great. On the up side, she didn’t throw anything back up… Her lips are swollen and her mouth still has many sores, but the nurses say it’s getting much better. She is well enough to shower alone and this remains a good sign.

On a personal note, I found today to be difficult for me… I have always been able to handle the blood, the puke, the BMs, etc. I fancied myself a bit of a pro! But today I realized that I don’t really know how to help her anymore… my old tricks don’t work if she’s not awake and since I’m not up on all the daily meds, I feel slightly useless… Our Mom has been here every single day and I think Erica has attached to her now the way she did with me two years ago. Since I came in this afternoon, our Mom was able to get some necessities done (e.g. laundry and a real meal!). However, when Erica would wake up randomly throughout the day, it was our Mom that she called out for… She asked for her repetitively and reminded me of how Mom does things around the room and that she knows where things are, etc. I really felt out of practice and sad that I can’t make her feel better like when we were in Boston… on the up side, when she was more lucid in the evening, we were able to engage more and goof around a bit.

Since I now know what it feels like to rely on blog posts to know what’s happening in E131, I will do my best to report daily. So forgive me now if I’m redundant tomorrow.

Until then… peace.

One tough cookie!

Imagine the worst tooth ache or mouth sore you have ever had. Take that, multiply it by 20, and then imagine that the pain is all over your mouth, throat, down your esophagus and in your stomach. This is called mucisitis and it is caused by one of the chemo’s Erica is being given.

Imagine waking up every morning knowing that all you have ahead of you for the day is a constant battle against pain, nausea, and the sleepiness and “drug brain” that comes with all of the pain medications. This has been Erica’s reality for the past week and will be her reality for the next week or so.

Imagine being a prisoner of your body. Not knowing from one moment to the next whether or not you are going to have to throw-up, use the bathroom, or succumb to sleep with absolutely no warning.

Her BMT team comes in every day telling her that she is doing well and that everything that is happening is “to be expected,” but that doesn’t help relieve her pain. She is facing each day with all the strength and determination she has, but as each day passes, it gets a little less.

The past few days have been a balancing act of finding the proper dosage to manage her pain but not so much that she is loopy and out of it. We have yet to find that right balance. There are moments where her head is clear and her pain isn’t too bad. But the majority of her time right now is spent sleeping off all of the meds. All that she can really do right now is just get through it.

Her white blood cell count will start coming back up (it is currently at .1 and we need it to be 4.0-11.0) and once that happens her body will start healing itself and she will start to feel better. The plan is for her body to start healing mid to late next week, to re-introduce foods and have her keep them down, and to keep her infection free. Once that happens she will be able to head home.

There is no way around it, the girl is one tough cookie. She has her weak moments but I think, scratch that, I know they are fewer than most of the rest of us would have. In comparison to the darkest days of her chemo-induced depression back in Boston, she is coping very well. However this round of nastiness (sorry but there is no better word to describe it) is throwing her for a loop.

Since her white blood cell count is still non-existent, visitors are still a no-no, but rest assured that she is being very well taken care of by her Mama. Judy is an angel in the true sense of he word and is doing an amazing job caring for our girl. If any of you have a moment, please take the time to send her a little note or picture. Mail time is her favorite time of the day and she still has plenty of wall space here in E131.

Erica’s mailing address:

Stanford Hospital and Clinics
E1 BMT
Attn: Erica Murray, E131
300 Pasteur Drive
Stanford, CA 94305

A Body in Escrow

We all have no more permanent real estate than our bodies. We go to school and the gym to make home improvements; we slather on cremes to protect the decks from weather-induced decay; we sometimes find infestations that only professional pest control can heal.

And once in a while, only rarely, we put our bodies up for sale. You've tried everything else, and the only recourse left is to transplant out the current family and hope that a new one will treat your number one asset a little better than you can.

My body had been on the market since February 2006. Despite the nine-million registered home-seekers, I could not find that perfect match. Finally, my real estate agent team suggested that I settle for this European woman who loves busy clashing wallpaper and piles of unorganized clutter. I had to suck it up that the new person running the show at my house wouldn't be my perfect decoration match, but maybe crazy wallpaper is coming back into style?

So we shook hands on April 29 and she immediately started bringing her belongings into the house. We agreed that she wouldn't officially move in nor move in her family and pets until my house and I felt a little more comfortable that they would somewhat respect the way I'd had things for the past 28-years. So, we're keeping some chemotherapeutic controls on her and her polka-dot mauve prints. Then, if we're all ready, she'll move in and start really taking over the place starting around May 14.

In the meantime, this period of escrow has turned my abode topsy-turvy. I'm trying to be the best hostess possible, but I'm operating in Opposite Land. All the things you'd normally be advised to do during difficult transitions do not apply here.

• "Eat nourishing foods and drinks." I'm not eating anything, food consumption being quite the awkward sacrifice for a gal who loves to shop for, prepare, cook, share, and eat for three squares per day.
• "Try to keep your blood pumping for both psychological and physical finesse." No exercise. Being confined to one room is rather limiting in the mileage category.
• "Go soak up some Vitamin D." Sunshine will be a danger to me for the next year because my skin will be very sensitive and Graft V Host Disease often manifests itself in the skin.
• "Laughter is the best medicine", true, but when you have sores and mucusitis, a peal of laughter can lead literally to tears.
• "Rely on your family and friends." Friends help people through their trials normally, but without a functioning immune system, I have to restrict the contact I have with people severely.
• "What's good for the bottle,..." When I see someone nonchalantly toss a glass can into the regular trash, I cringe. Recycling has been drilled into me as an easy civil responsibility. However, at the hospital, the utmost in cleanliness takes precedence and so I am having to retrain my brain to toss out perfectly good items. Ouch.

Sigh. So, here I wait, letting the minutes of escrow tick by, their uncertainty drowning out all other sound. I have grown rather attached to my "home" over the years and I really hope to be on the right and most direct path toward its best laid plans.


Oh, and if you get a chance-- por favor drink a cerveza para mi hoy! Feliz Cinco de Mayo!

Day 4: Card Shark

If how Erica is playing cards right now is any indication to how she is doing overall, I think we can say she’s in pretty good shape. She whooped my butt in rummy today, four games to none. I wish I could say I let her win, because her mouth hurts, she’s in the hospital and is on pain medication, but I can’t :)

Today, Erica has slept more than the past two days. When she is awake, she is at full attention, but she has been sleeping quite a bit, my guess being because of the increase in pain medication. She is on a constant drip now, but also has a button for when things get bad. Most of her pain comes from the mouth and throat area where the sores are starting to run rampant. MOSSESS is in full effect. She has a slight skin issue with her left thumb, but as of yet, this is it for the skin problems (knock on wood).

That being said, she is still doing excellent. Vitals are steady, no fevers yet (knock on wood again), she is almost as quick to smile as normal and, well, she schooled me in rummy. She was really hankering for a stroll around E Unit again in order to break her course record, and for a change in scenery (plus she had the energy) but we found out that our little saunter of the other day was not ordained in the Stanford Hospital and Clinics Bone Marrow Transplant Unit Post-Transplant Manual of Pretty Useful and Not Always Mentioned Rules and Regulations of Post-Transplant Standard Operating Procedures (Pre-Engraftment). Rule II.2.7932b, paragraph V.6y, line 3b states: No leaving the room. So, with that limitation in place, it makes things a little tougher for the next few weeks (both physically and emotionally).

She continues on her fat and vitamin IV diet, for which we are still waiting to hear how many calories she is receiving (Erica says it’s purely out of curiosity, but we all know she’s watching her waistline ;) ). She had a popsicle today and will add sherbet to her regimen soon. Her favorite thus far is ice-shavings with fruit juice on top (aka snow cone, Slush Puppie). The cool, refreshing flavor feels good on her sore mouth.

Okay, going to see if I can challenge her to rummy again (and get beat down)…

Day 3a: Hericales

Folks, we have a little Hercules on our hands. Two days ago this young woman was lying in a stupor from a BONE MARROW TRANSPLANT, so much out of touch with reality that Obama could have won the election and she wouldn’t have even batted an eye. She might have even thrown up when waking up to hear the news.

But today, my dear readers, today, was even better than yesterday (take that Ice Cube!). Despite an ever sorer mouth, which has caused the PC of the PCA to go to a continuous drip (with a little PC for extra flavor), Erica's medicated-induced sleep was interrupted by her own body’s desire to stay awake! It probably did not hurt that she got platelets, which tend to cut down on bleeding and give her a bit more energy. And, because of all these waking hours, our newly-dubbed Hericales carried out 12 labors as a penance for not being able to sleep as much today. And much like Hercules, Hericales can only be seen as being great for having carried out these 12 labors:

1) Took a shower
2) Started a crossword
3) Wrote some emails
4) Ate applesauce
5) Watched an episode of Heroes
6) Made a few phone calls
7) Sang the entire “Yes We Can” song
8) Learned to use MOSSESS
9) Untangled herself in record time from a mob of cables (aka IV lines) that look worse than what you would find behind your television
10) Used up an entire bottle of saline solution from rinsing
11) Got out of bed at least a half-dozen times.
12) Did 15 minutes of physical therapy with a Thera-Band (!!!)

Even though she completed these Herculean tasks, she still needs your lovin’ as the road only gets tougher during roughly the next two weeks. So, please write!!!

Stanford Hospital and Clinics
E1 BMT
Attn: Erica Murray, E131
300 Pasteur Drive
Stanford, CA 94305

Day 3

Lots of happenings to report today from E131.

Not having been at the hospital on Day 2, I have to comment on the major improvement in Miss E’s energy level and overall wellbeing that I am witnessing today compared with Day 1. When I left the hospital on Wednesday, I was terribly worried about how she was going to cope throughout the night, without us there to help her during her awakened moments. As Josh’s account illustrated quite well, Day 1 was a very hard one for Erica. Though she was heavily sedated, the 36 hours following her transplant were among the most challenging that she has faced in her 2+ years of treatment.

Thankfully, today is off to a great start. Miss E rose shortly after I arrived at 8:30am, and showed a tremendous amount of energy throughout the morning. With Judy’s help she rinsed out her poor mouth and throat, which bothered her quite a bit throughout the night, but that was the only help she needed to get the day started. She completed the rest of her morning routine independent of Judy and me – brushing teeth, showering, dressing in fresh clothes, opening mail, etc. We no longer have a “Sleeping Beauty” on our hands (although as I write this at nearly 11am she has dosed off, presumably tired from her valiant effort a few hours earlier), just a “Beauty”.

The Doctors came by to do their usual morning check-in. They confirmed for us what Miss E had suspected, that her mouth and throat soars had slightly worsened since the day before. Although she was told to expect the soars as a result of the chemo, I think she has been surprised by their severity. Her white blood cell counts are very low right now. Yesterday and today they have been hovering at around 0.3, which is too low for her body to be able to heal itself. So, unfortunately, the soars will persist until her counts go back up, which is expected to occur anytime between Day 14 and Day 21. In the interim, the Doctors have prescribed a hearty drug, akin to Morphine, to ease the pain. During the day Miss E is coping very well without the drug, and, for now, only plans to take it at night.

Day 2: It Was a Good Day

Ice Cube got it right back in 1993. And I can’t think of a better way to describe today. But, instead of “no hog”, there was “no naus”. And she wasn’t “freaking brothers everyway like M.J.” on the court, but you should have seen the way she tore around E unit today for a three-minute walk after being comatose the entire day yesterday. The nurses gave a collective heartfelt greeting as she emerged from her room with her 100-pound IV stand in tow.

And she didn’t have to use her “A.K.” either, because she had her PCA (Patient-Controlled Analgesia – morphine!). Far better stuff if you ask her. It wasn’t even sad that there was not any Yo! MTV Raps on, because she got through two episodes of Lost and watched Grey’s Anatomy. The only fool trying to “blast” her was nearly everyone for telling her how cute she looks. The Lakers didn’t beat the SuperSonics, but Joe Andrew switched from Clinton to Obama. And she sure did “grub out”. Some small pieces of fruit from a fruit cup and some apple juice. Unfortunately, she wasn’t as drunk as Ice Cube was, but then again, he just doesn’t know how wonderful it is to be almost drunk on saline solution, because she was a mouth-rinsing champ today!

It was a good day

Day 1: Sleeping Beauty

That’s right. Our intrepid little adventurer has acquired a nickname in E Unit’s halls: Sleeping Beauty. And so right they are. On both accounts. If I had to guess, out of the 24-hour day, Erica slept for probably 22 of them. Every few hours, she wakes up quite groggily, never fully coherent or communicative, takes care of business, then falls ever-so-easily back into a medication-induced sleep that may or may not take her to dreamy places. Room E131 echoes with two sounds: the twirling pumps of her IV lines (3 to 5 at any given time) and the sound of her heavy breathing. An example below (she will kill me for posting this) of our Sleeping Beauty:

For someone who is sleeping for 22 hours a day, it’s hard to describe how being with them can be an intense experience. Katie, Judy and I rotated in pairs today being with her. Over 90% of the time, this means reading, working, listening to the IV pumps whirl, getting info from the nurses/doctors, staring at Erica, trying to ventilate your gown or juggling your laptop while trying to silence the beeping pumps, because they have air in the line, are out of fluids, the battery is dying or they are just acting ornery, while waiting for someone to come fix the problem (this is at least 40% of the time).

The other 10% is much more humbling. Usually, when Erica wakes up, it’s suddenly, whether by her own body or by a nurse or doctor needing to take vitals, give her medication, etc. It takes her less than 30 seconds to realize that she needs to either go the bathroom and/or vomit. Up to another 30 seconds to communicate those necessities, which is usually either five seconds in time or five seconds too late. Today, she vomited every time she woke up. It’s rough to see someone you care for who is half-coherent doing nothing but going to the bathroom or vomiting during their only waking moments. And she goes through the motions every time, never ceasing to amaze me in how courageous she has been throughout this entire process.

Even though she is vomiting and had a headache today, these are not bad signs. Quite normal with the chemo and radiation that she received. She is holding tight with her vitals, maintaining a good blood pressure and a perfect temperature, which are important. Because she is asleep so much and can’t hold food down, she is being fed intravenously. She has two bags, one is full of lipids, or the “fat” bag, and the other is full of the necessary vitamins she needs. Today being Day 1, she also received methotrexate, another type of chemotherapy that is designed, in simple terms, to keep her new donor’s stem cells from being too aggressive at the outset. She will receive this on Days 1, 3, 6 and 11 and why her new white blood cell counts will not start appearing until in between Days 14 and 21.

The best part of today, by far, was when I was chatting via webcam with Jaci and she was teaching me some basic sign language that Erica knew to communicate that way rather than through speech, which is sometimes difficult for Erica (because of her groggy state). When Jaci would say what she was signing to me, Erica would sign it in her semi-conscious state, hearing her sister from across the room. Very sweet. Even though she is comatose most of the time, you can still see her spirit coming through the haze.

Despite Day 1 being quite rough on Erica 10% of the time, she made it through without any issues as a result of the transplant, which we must all be thankful for. We can only hope that the other 90%, Erica was in a much better place (eating croissants and drinking a café crème in a café in Paris, for example ;) ).