Tuesday, March 28, 2006

March 28, 2006

[This is a photo of Erica about to undergo radiation. The plastic mask is form fitted specifically to her face and the technician snaps it down to the table to keep her cranium still as she is only receiving the radiation to her brain. It is so difficult to watch her go through this--even for the mere minute or two it lasts--but she enjoys the music playing in the room during this time. The only complaint she has mentioned is the smell of burning during the procedure... it's even more creepy to realize it is herself that is indeed causing the odor.]

Just an update on our latest situation...
Each day, Erica is getting better and better. The pain in her neck and back are slowly subsiding. After an MRI showed us that there was possible leaking of her spinal fluid after an LP last Monday, it helped us understand her pain patterns. After laying down on her side for twenty minutes or so, the pain would nearly dissipate. However, shifting from a horizontal position to anything remotely vertical (i.e. sitting, standing, or merely propped up in bed) caused flashes of INTENSE pain all down her spine. Then back down from standing (with dull lower back pain) to laying down would trigger the pain once again. Throw in a few days of consistant nausea and our week is covered. Needless to say, last week was filled with sadness and boredom.
As the weekend approached, she was able to move slowly and this allowed some freedom from her bedrest. Jamie was amazing and helped out for the entire week and Jonathan & Ted, Auntie Shirley & Uncle Jimmy came to cheer her up for the weekend. Before the visit was over, she was walking around and socializing! I know the medications help her physically, but the support and love from friends give her inner strength more than anyone realizes. Each post on this blog, we talk about! Every time someone calls or emails, when Adam bikes over unexpededly from Medford MA to drop off mail, when Kent shows up with donuts... we talk about it. Words don't begin to cover it... thank you so sincerely.
She still has four more radiation appointments and three more LPs during this second phase of treatment. Unfortunately, tomorrow is a big day of both. Since we know what we *think* causes it -- yea, we pretend to be MDs -- we are taking precautions to hopefully avoid another tough experience. I'm trying to get her to drink as much fluids as possible to buff her up before the spinal tap and we plan to have her lay down for a few hours after her LP. Truthfully, I'm nervous... I will report back asap.
Our house is turning into a home as most of our boxes are unpacked and we are building a daily routine. Per Marcin's suggestions, we are looking forward to so many day trips around beautiful New England! Fishing, walking, bird watching (I'm still trying to convince her that we are just not OLD enough to do this), and letting Lola run wild sounds like heaven! Soon enough... :)

Thursday, March 23, 2006

March 23, 2006

Jamie reporting from Jaci & Erica’s new condo!!!

Since Jaci and Judy accompanied Erica to the hospital today, I was assigned blog duties. I will do my best to fill you in on all of the happenings of the past few days and how Erica is doing. The past 3 days have been pretty hard on our girl. As some of you know, Monday was Erica’s first day of a 10-day radiation treatment. The radiation is done on an outpatient basis but requires her to go to the hospital everyday for treatment. Also on Monday, she received another of the dreaded lumbar punctures. The good news was that the lumbar puncture came back showing all healthy cells, the bad news was that the LP caused horrible spine and back pain that has pretty much made her immobile for the past 3 days. In addition to the constant back pain, the combination of radiation and chemo caused severe nausea. The only time that she is o.k. is when she is lying flat on her back covered in ice packs. She actually told me the other day that ice packs are her new best friend ;)

Getting her to and from the hospital the past 3 days has been very hard. Not only is walking and moving very painful for her, just about every time she does move, she has to head to the bathroom because of nausea. When we took her to the hospital on Tuesday for her radiation treatment, she had to be admitted to the Emergency Room so they could hook her up to an IV to administer fluids, anti-nausea meds and pain meds because she wasn’t able to keep anything down. After a long day on Tuesday, she was finally able to come home and sleep in her own bed.

Wednesday’s trip to the hospital presented almost as many challenges as Tuesday’s. The pain and the nausea were so bad that she wasn’t able to lie down for the radiation treatment. Her doctor decided to skip the radiation treatment for the day and focus on her pain and nausea. Again, they hooked her up to an IV and gave her fluids, blood, and more anti-nausea meds to try and make her feel a little better. She managed to get home a little earlier yesterday and she, Jaci, Judy and myself were able to enjoy a delicious dinner together.

Today’s trip to BW was a little better then yesterday’s, but this time she had to have an MRI to try and figure out what was causing the intense pain and stiffness in her back. The 3 hour long test was quite an ordeal but she had a fairly calm and pain-free afternoon. After meeting with the neurologist who examined her MRI results, we learned that she might have a small spinal fluid leak which is causing the pain. Spinal fluid leaks are usually patched up in a very simple procedure, however, since Erica will be having two more lumbar punctures next week, they thought it pointless to try and patch it up. So, they sent her home tonight with a new prescription for steroids and some new pain meds (including a FABULOUS morphine lollipop, no joke) and she is feeling better then she has in days. We just finished a delicious Chinese dinner courtesy of Auntie Charlotte and Uncle Bill, thanks for the chow fun!!!

She heads back to the hospital in the morning for one more treatment this week and then she will spend the weekend resting and having fun with this weekend’s round of visitors Uncle Jimmy, Auntie Shirley, Jonathan and Ted!!!! While the past 4 days have been a series of both physical and emotional ups and downs, she is still holding strong, and when the pain subsides enough, that beautiful smile still shines through.

Sunday, March 19, 2006

March 19, 2006

The day before yesterday I realized I have cancer. Yup, all that hospital stuff, dropping out of school, my hair falling out didn't clue me in, I guess. The reality of the disease and the duration and duress of treatment has really hit home in the last few days. I think the lag time in real sadness/anger/frustration/etc is due to two things. One, in the hospital, there was a flurry of people and activity around me at all times. I was wonderfully distracted. And two, consultations last week with various doctors informed me of things I simply did not know previously. For example, I didn't know how harrowing a bone marrow transplant is. That it entails another month-long stay in the hospital or that one's immune system is completely wiped out requiring a year of recovering said immune system while living a very very sterile and isolated existence. Also, although I knew radiation was a phase of my treatment, now that it looms tomorrow, I am scared. The idea, the pur-pose, is to kill cells in my brain. I kind of like my brain and use it often. So, naturally, I am petrified and pissed and loads of other anxious emotions. Perhaps my future professors will grade me easier if I say I've had radiation to my head?

Other than emotional trouble coming to terms with all that looms ahead, I physically feel good. Today is the first day I can say that I don't have a headache in a few weeks. We've just been plodding away at the boxes, unpacking slowly but surely. Kent and Joyce were frequent visitors last week; they are always a delight and usually a help too with everything from computer concerns to home maintenance to helping in the kitchen. Thank you! And of course, what would I do, where would I be, without my Mom and Jaci who take such good care of me. Every time I complain, I know that it could be so much worse. I am blessed with amazing friends and family. Amazing. See, I told you I was emotional.

All in all, I feel physically ready to begin the next two weeks of treatment. I'm nervous mentally, but getting better. Here we go.

Thursday, March 16, 2006

March 16, 2006

Yesterday was Erica's first visit back to the hospital since her release last Friday afternoon. Unfortunately, it was the one day that she woke up tired and remained exhausted for most of the day which made this outting a bit difficult. Coupled with the tiredness, she has been experiencing nausea for the last three days. Thankfully, Marie was here to help with everything from navigating me through the confusing streets of Boston, builing IKEA furniture, to holding Erica's hand and offering kind words.
While at the hospital, we received good news and bad news. The good news first: her body is in complete remission with zero leukemic cells still in her bone marrow! Her cell counts are that of a normal person and they are pleased with the retreating fungal infection. However, there always seems to be something negative to report, the bad news: we need to start thinking about if Erica should have a bone marrow transplant surgery. The pros of this are naturally that the new bone marrow would ideally produce all healthy white blood cells and the leukemia won't return---which could also happen without the transplant surgery, but a greater percentage with the surgery. There are four potential side effects that could happen if we go through with the transplant. (1) organ damage or failure; (2) infection; (3) Graft v. Host Disease (if the host, aka Erica, rejects the donor causing problems with her skin, GI tract, etc.); and (4) fatality.
This surgery would be a loooooong four week process with chemotherapy, radiation, and then the transplant which is administered similiar to a blood transfusion. Although the doctors' initial response to the ALL was to go ahead with the transplant surgery, there are now reservations because of her initial high white blood cell count but her fantastic response to the chemo may factor in too.... basically, we were told not to worry too much about this for another 8-12 weeks and they will keep us up to date on everything we need to know. During that time the doctors will be explore the three potential semi-matching donors from the registry and focusing on clearing up her fungal infection.
This sentence is just to end on a note other than fungal infection... my dog doing well! :)

Sunday, March 12, 2006

Top Tens

Home sweet home. The journey continues. I am pleased to be out of the hospital although I am still very fatigued and spend a considerable amount of time in bed. The townhouse we’re living in is perfect and I am forever indebted to Jaci, my Mom, and all of the friends who have helped us and continue to help us get situated.

The highlight of yesterday morning (and perhaps of my twenties in general) was falling asleep in a motorized wheelchair in the grocery store. Yes, I am a rock star. After taking a three-hour nap to recover from the over-stimulation of Star Market, many friends came over for dinner. I am humbled by the warmth and love with which they shower me. (Picture is from last night- thanks Gioia!) I worry when I look in the mirror that I might gross someone out with my patchy bald head and gaunt features, but my friends and family seem to not mind. I feel embarrassed to wear a robe constantly and move like molasses, but no one seems to question that it is not sickness in their midst, but recovery. Anyway, suffice to say that the support I am getting makes me feel so positive and normal.

During my last few days in Room 75, I composed a Top Ten List of the best and worst of the 29-day hospital experience. Voila.

Top Ten Best Things:
#10. The wig wall. Almost every visitor who came tried on one of four exciting wigs and we ended up covering a closet door with fabulous pictures of men and women in pink, blond, and red coiffures. I figure some percentage of these up-and-coming young people will definitely run for public office at some point and these could be very valuable.
#9. Perma-Pjs.
#8. No phone. For some reason, talking on the phone gives me a headache, so with very few exceptions, I have literally not spoken on the telephone for a month. Although that leaves Jaci with quite the secretarial duty, it has been liberating for me.
#7. Losing my hair. Three great things about losing one’s hair include the joy of passing under an air-conditioning duct and feeling the tiny breezes on my scalp, the ease of putting on t-shirts, and no bed head.
#6. Hearing from old friends. I am blown away by how many good old friends have come out of the woodwork and look forward to reconnecting with them.
#5. Mail call. There’s nothing like it when the nurse walks in with envelopes and packages and you just can’t believe that they are for you.
#4. My room. It was decorated floor to ceiling with symbols of support and love. Thank you.
#3. Visitors. Don’t let anyone tell you that the power of laughter doesn’t heal. I could feel terrible all day and my fatigue and pain sometimes would just evaporate with the appearance of a new friendly face.
#2. Doctors and nurses. Everyone has told me that I am at one of the best hospitals for treating leukemia and I can attest that the staff of doctors and nurses at Brigham and Women’s Hospital far outstripped any expectations I could have had. My main attending physician is this hilarious Argentinean, who carefully listens to me, who is gentle, informative and down-to-earth. He is a patient-advocate and you can tell. My nurses…. Where to start? These women took care of me night and day, literally. Their efficacy, reliability, and compassion made for many tearful good-byes.
#1. Bringing my loved ones together. I love it when people from different segments of my life have the opportunity to meet and get to know one another. Jamie called it my “elf on the wall” trick (the joke sort of deriving from me being the obvious elephant in the room, but trying to be like a fly on the wall), but many hours of each day was spent in a semi-snooze listening to my Mom get to know my friends, or my sister get to know my graduate school colleagues, or a friend from Japan getting to know a friend from high school, etc. I loved just listening to their precious voices and knowing they were there.

Top Ten Yucky Things
#10. Missing Fletcher School lessons, functions, etc.
#9. Surrounded by great books, DVDs, CDs and no energy or alertness to enjoy them.
#8. “Mechanical soft foods diet”. After my oral/nasal surgery procedure, they gave me a new menu which had such tantalizing things as “pureed French toast”. You don’t do that to a girl on steroids who’s already down 25 pounds. I had to smuggle in Philly cheesesteak sandwiches.
#7. No privacy. The door to my room seemed ceaselessly to open. Close. Open. Close.
#6. Being in a constant tangle of IV wires.
#5. The days when I looked like a monkey. The timing was perfect. Just when we’d shaved my head to a pretty short scruff, I had a nasal biopsy that left one side of my face totally swollen. So, I had sort of the protruding forehead, the sunken beady eyes, big swollen lips. I was the missing link, I swear. Intelligent design theorists need not look further.
#4. Numbness of fingertips.
#3. Soreness of teeth. Like when you get your braces tightened.
#2. Waking up every 1-2 hours for: bloodwork, new IV fluids, blood pressure readings, temperature readings, oxygen readings, heart rate readings, or just to go to the bathroom.
#1. Scaring my family. Because I felt so (relatively) healthy at the time of my admittance and because the team of doctors gave me just the right balance of direct information and encouragement, I never realized that my life was in danger. I still feel worst when I witness the painful empathy of my family. It’s not that bad, I swear!

By the way, I realize that many of you have background questions. Whether they be medical about just how I ended up in the ER on February 9th, or more "deep background" if you thought I was in Japan, or Washington DC, or engaged in the Caribbean-- how did I end up going to grad school in Boston right now? I do promise to do a blog or two about that soon.

Thursday, March 09, 2006

March 9, 2006

Today has already been quite busy: bone marrow biopsy, LP, numerous IV bags, and a chest x-ray scheduled for this afternoon. However, Erica is positive through it all because of the great news we received: she is going home TOMORROW! :)
Her day is going to be spent taking down all the pictures, cards, artwork, and decorations. Our guess is that it will take both days to clear it all out! (Can you see just a smidge of all the love on the walls in the picture??) As for now, she and Kent are solving crossword puzzles meant for geniuses... Her energy level is still low, but she is able to get up and walk around a bit. The doctors are encouraging her to resume her life as normal--if normal means never dusting, not overexert herself, and spending her days on the couch enjoying TiVo!
I must say that it will be hard to adjust to a life of nurses, doctors, and constant attention to merely a weekly visit... I offered to come into her room every two hours in the night, turn on the light, fiddle with her PICC line, take her temperature, and pretend I know how to take her blood pressure just to help her transition! She turned me down... But I do think it will be a bit sad not seeing so many of the nurses that we've come to enjoy SO much and the daily visits from her doctors will be missed too!

Wednesday, March 08, 2006

New Address Requests

Since Erica will probably be released from the hospital this weekend, some folks are asking for our new address. Cards, packages, letters are wonderful medicine- so keep 'em coming! However, we don't feel comfortable putting our address online like this, but if you're a friend who'd like our new address, would you mind responding to this blog with your e-mail address and we'll reply asap?

Monday, March 06, 2006

March 6, 2006

Three days ago, I attended the Faculty-Waits-On-You Auction dinner at Fletcher. This year they decided to donate the proceeds to the Boston chapter of the Leukemia and Lymphoma Society in honor of Erica. WOW. This event was so amazing! From the moment I walked into the room, I was greeted by Dean Sheehan, Professor Trachtman, Professor Burgess, many of her classmates, and lots of her friends. I saw a poster that read, “Fletcher Supports You Erica” which brought me to tears… During the evening, our table toasted to her (each person in a different language!), the auctioneer raised his beer and reminded everyone of the personal connection to the cause, and many auction winners gave their prizes to Erica. Thank you to Marcin for inviting me and special thanks to Rose and Allison for making the whole event so special. [Pictures above are from that event. The hospital room can look equally festive at times, so I thought I'd better distinguish.]

On to more serious matters. Later that same night, one of Erica’s many wonderful nurses, Donna, noticed a bit of swelling around her right cheek and nose. An Ear, Nose, and Throat doctor was called in around midnight and decided to perform a biopsy in her right nostril that night. So, around 4am, Erin $maker arrived at BWH with the U-Haul, my car in tow, and Lola the pup riding shotgun. Thanks to Leslie, who is now chummy with the head security guy here at BWH, we were allowed to leave the truck in front of the hospital until 8am---with Lola still sitting shotgun. At 4:30am, the ENT performed the painful biopsy and Erica was given lots of morphine to sleep. Leslie and I took that as our opportunity to unload the U-Haul so we met our “moving team”--consisting of Kent and his roomies, Adam, and Marcin--at the new place. We were back at the hospital by 12:30pm when the WONDERFUL Adam and Marcin offered to take Lola to Tufts for the afternoon! THANK YOU! :) Nurse Donna and her four dogs are now watching Lola until Erica gets released from the hospital. Her flexibility and generosity is truly a blessing.

Later the following afternoon, the ENT docs decided that they wanted to go in to perform another biopsy in her upper cheek because of the swelling that was spreading towards her eye. Instead of cutting through her ‘smile line’ that would definitely leave a scar, they put her under general anesthetic and cut above her gums from the inside of her mouth. When they wheeled her down to the OR, there was some drama about her food intake. A team of anesthesiologists, ENTs, and oncologists were called in to do a risk/benefit analysis of whether the brownies (cookies, juice, soup) she had eaten an hour before would cause a problem during surgery. When going under general anesthesia, the patient should not eat 8 hours prior, but no one informed Erica of this! Basically, the huddle concurred that the chance of her aspirating (puking) into her lungs causing pneumonia or other lovely infections for a gal sans immune system was only a potential situation and was therefore less of an emergency than the fungal infection in her brain causing the swelling. How crazy is that: Erica‘s lying there hearing the docs say, “ok, we are just trying to decide which is worse: the pneumonia in your lungs that could kill you or the fungal infection in your brain that could kill you. Oh, and we should really decide which one's worse in the next five minutes.” Super. Thankfully, there were no complications during the procedure so it was a good thing they went ahead with it and we are simply waiting for the swelling to subside and for the pathology report.

She returned to the room about 10pm after waking in the recovery ward, but had a rough night with little sleep. The nurses gave her morphine every hour and her discomfort lasted until the morning. There is minimal swelling now on the right side of her face (but she won’t let it go that she thinks that she looks like a cross between a monkey and Lucy---yes, Lucy. The first primate to walk upright found in ice! Each time the name Lucy is mentioned, she breaks out into crying laughter!). After we showered, I shaved the last of her hair off and she is still gorgeous!

Today she received the news that her WBC count is now at 1310! Once her Actual Neutrophil Count (ANC) is above 500, she is able to be released from the hospital. DRUM ROLL PLEASE… her ANC is at 877 today!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Granted with everything being so hectic this past weekend (the facial/nasal infection), we are going to stay here until the full 29 days. Which means, in five days, Erica may get to come home!

Needless to say, she has not checked her e-mail for many days due to the headaches and is pretty disconnected. Sorry to anyone who's been trying to e-mail her. Again, this blog is the surest way to get her a message. And, of course, the cards that continue to pour in from friends, old and new. Thank you! You make US so happy when her face lights up at visits, mail, and messages.

Friday, March 03, 2006

March 3, 2006

I'm baaaaaack! - jaci
First, thanks Nurse Bossy Bessy for all your attention and love bestowed upon Erica in my stead! Secondly, if you would like to call Erin $maker, be sure to do so within the next twelve hours since she arrives in Boston tonight. And my third shout-out is to our cousin, Robby & his wife Emi: CONGRATULATIONS on the pregnancy! We look forward to spoiling him or her. :)
As far as Erica goes, the last four days has been a blur of morphine and headaches. Her teeth ache as well as the hair on her head--similar to when one's hair has been up in a tight pony tail. Her stomach aches have completely subsided and thanks to the drugs, she sleeps the day away.
The Fletcher School has an annual Faculty-Waits-On-You Dinner which includes an auction. This year all the proceeds are going to the Boston chapter of the Leukemia and Lymphoma Society in honor of Erica. I have been invited to attend so I will happily report on the evening's festivities in the next blog!
Finally, thank you to everyone who has sent care packages. You know who you are and Erica is deeply touched!! Not to mention, our tummies are happy and full. :)

Lt. Leslie Edwards has written a walking cadence in honor of Erica's stay here at Brighams & Womens to the tune of a traditional army song:

On top her head she wore a freezing ice pack,
She wore it in the morning and the rest of the day.
And if you ask her why the heck she wore it,
She wore for those headaches that would not go away!

In her arm, she has an IV line,
She has it in morning and the rest of the day,
And if you ask her why the heck she has it,
She has it for the cocktails that take her pain away!

Behind her door, she has a pump to sanitize,
She has it for the germs that dance around all day,
And if you ask her why the heck she has it,
She has it for her peeps to take the germs away!

Please note that Erica now EAGERLY anticipates a (PG!) rugby song from Jamie, Marie, and/or Chris! :) Jump on it!!!

Thursday, March 02, 2006

If you have a minute, call Erin!

First things's first. Yes, her last name is the kick-ass unique name, Moneymaker. My friend from high school, Erin, has benevolently offered to drive from Los Angeles to Boston with all of Jaci's belongings, her car towed behind the u-haul, and her dog, Lola, by her side. She has agreed that I can post her cell phone number on this blog, because I think it would be nice for her to have lots of phone calls to keep her awake and motivated on this long journey. She is really nice, really sarcastic, really smart, and talks a little bit fast-- you'll love her. WINDOW OF OPPORTUNITY NOW CLOSED. PHONE NUMBER IS CLASSIFIED INFORMATION. I think she goes through many places without reception, so a message works too! Thank you.

Wednesday, March 01, 2006

March 1, 2006

Bess reporting from Boston:

As we welcome March at the B-dub I am happy to be able to pass along some messages and information regarding our favorite lady, Miss Erica. I am happy to be here while Jaci is packing up for her move to Boston. These were some big shoes to fill and I am so thankful to Jaci (and I am certainly not alone) everyday for being such a great caretaker.

Last night we had a fiesta and had some yummy mexican food brought in (thank you Auntie Kathy) with some Fletcher friends, Kent, David, and Anna! Anna arrived yesterday morning and Erica has been so happy to have her wise, insightful and sweet Anai around! We took some more photos for the wig wall (photos to come), listened to some West Coast rap and Erica sat in a chair the whole night! Leslie arrived later in the evening and we got to visit with her for an hour before it was time for E to attempt to get a good night sleep.

As I was kicking everyone out of the room (see, I am trying, Jaci) the nurse administered her nightly cocktail of happy sleep medicine so that hopefully since the first time since she got here, could have an uninterrupted night of sleep. Erica wanted to go to the bathroom one last time so that wouldn't wake her up. So the usual drill, get up out of bed, tug the IV tower, do the business- except that the next thing I know she took a head dive into the shower. Since she was attached to the tower, the Picc line in her arm was so tight and I couldn't get it any closer. I ran to get the nurse and when we got her up she kept falling forward, almost like her head was too heavy (and she wasn't even drinking). She was a bit confused and disoriented so she got some oxygen. We got her back in bed, checked her vitals, docotors came and went, and she is doing fine today. There was a CT scan this morning just to be safe and it appears that she just bit her lip. Even falling she is graceful! We think the medicine just hit her really fast but her headaches are still around.

She had a sleepy morning, just ate some more breakfast and is looking at high school photos with Leslie. Erica was very stylish in the 80's and I will leave that up to your wildest imagination. Bongo tapered jeans- WOO HOO- HOTTIE! Thanks to Leslie for being here and all the reminiscing. It was fun to listen to them try to decode the list of inside jokes they made when they were younger.

All in all, I think the constant stream of visitors are doing wonders for Erica. It is amazing how fast time flies in this room. We keep joking it is a vortex because all we do is sit, talk, eat, nap, read and the next thing you know the whole day has passed. We manage to keep her laughing, Dr. Sirulnik constantly has a comeback or two when he comes into visit, we tried to explain to Judy who Nick and Jessica Simpson are and mail time is her favorite time of day (so keep them coming). Speaking of Judy- she has been such a great person to hug and drink some tea with. She is progressing with her technology skills- I imagine soon she will be blogging too!

The nurses fight over who get to be her nurse for the day, she has such a great attitude and she cannot wait to move into her new place with Jaci. I tried to include as much info and fun facts as I could when I am not here in Boston, I stalk the blog. I should sign off now, thanks for all of your support and love.