Going home!

Hi!

I'm going home today, Saturday 7/31, hurray! I'm at Stanford right now, but being discharged in the next few hours. My treatment of ATG + radiation went pretty well this week. I had some minor complications the first two days of treatment (103 fever + low blood pressure), however they got it all under control with a boost of steroids by the third day and I sailed through the rest of the week. I did drive the nurses crazy since I was determined to get my 60 laps around the E1 unit every day (20 in the morning, afternoon, and night).

Starting tomorrow I will be outpatient daily for approximately the next 100+ days. This Mon-Thurs I will be receiving more radiation and Fri is the BIG day - TRANSPLANT! The donor cells should be arriving Thurs night and they will be infused into me Fri morning. From there I will be monitored daily and on Day 28 I will have a bone marrow biopsy to determine whether my body is accepting/rejecting the donor cells.

Because I'm not sure what my daily schedule will be like for the next few weeks as an outpatient, I'm not sure how visiting will work. Each day might be different and I won't really know how long I'll be here on a daily basis so I'll be posting updates more often for those of you interested in visiting/helping out.

Thanks to all of you who stopped by to visit this week, it definitely cheered me up and made the time go by fast! It actually worked out perfect by calling ahead of time, there was always a steady flow of visitors and I had plenty of time to rest.

Hope you're all having a great weekend!

Visiting at Stanford

Hi everyone!

Tomorrow, July 25th, I will be admitted to Stanford for the beginning part of my transplant.  July 26th-July 30th I will be getting radiation and an immunosuppressant called ATG.  The plan is for me to be discharged on July 31st and continue my treatment as outpatient with the transplant scheduled for August 6th.  This can all change however if there's any complications; after my first transplant I was supposed to be discharged on the 7th day and I ended up staying inpatient until the 30th day. 

I would love to have visitors, however if you could please call me before coming over I would really appreciate it.  Please note, that there's no flowers, plants, and/or balloons allowed in the unit and all visitors are required to wear a gown, mask, and do thorough hand washing before coming into the patient rooms.  Also, if you have any cold/flu symptoms and/or have received a live vaccine within 72 hours (flu shot, TB shot, etc.) please refrain from visiting.  If this will be your first visit to the BMT unit, it's best to check with one of the nurses at the nurse's station as to what to do before coming in.

Below are directions to Stanford and the E1 unit where I'll be staying.  As soon as I find out my room # and phone #, I'll add them to this post.

I'm looking forward to seeing some of you this week!


Directions to Stanford Medical Center:

• From Sand Hill Road (off of 280) turn right at Pasteur Drive
• Pass Welch Road and make left at Blake Wilbur Drive
• Continue straight past stop sign and park at visitor parking structure (on right hand side)
• Parking is free for first 45min and $5 after that

http://www.stanfordhospital.com/directions/driving/index.html

Directions to E1 Unit:

• From parking structure follow walkway to "garden" hospital entrance (the cafeteria should be directly in front of you once you enter sliding glass doors)
• Make a left in the main hallway and continue straight until you see the E1 unit on your left hand side
• Enter doors with "authorized personnel only" and approach the nurse's station directly in front for assistance/instructions

http://www.stanfordhospital.com/directions/insideHospital/SHC_1.html

Erika's Treatment Update -- Week 6

Hi all!

Well I made it through the weekend without a visit to Stanford - hurray! 

Last Thursday I went in for my radiation measurements and received two new tattoos on my hips.  I was supposed to get four, however they were able to use one of my old one's from past radiation treatment and to my surprise my old belly button ring scar lined up perfectly to make the fourth one!  I also found out on Thursday that my donor is a 53 year old female with no allergies.  The no allergies thing is good, because if she had any I would eventually get them also.  I'm still hoping to find out where she's from.  She has also passed all her tests and has consented to a transplant date of August 6th, yupee!

Yesterday was a full day of tests at Stanford, as well as most of the rest of this week.  Today I went in for the placement of my Hickman catheter.  I arrived at 7:30am for a platelet tranfusion, went into surgery around 1pm, had a blood tranfusion afterwards, and finally got to go home around 6pm.  The surgery went well, however I'm completely exhausted and have to be back at 7am tomorrow for another blood tranfusion and a CT/PET scan to re-stage my disease before transplant.  I'll have Friday and Saturday off and then I will be admitted as an inpatient Sunday evening.  I'll make sure to post directions to the hospital and the area where I'll be staying for those of you that would like to visit.

Well that's it for this week...not sure if you all caught the Tour de France today, but Lance is in 1st place and wearing the yellow jersey!!!  Hurray!!  It seems like everyone I see these days is wearing his wristband.  Hope you're all enjoying yours.

Love always,
Erika

Erika's Treatment Update -- Week 5

Hi again everyone!

With the help of my friend Randy, I've started this blog to do my updates instead of sending mass emails. I'll try to do an update once a week, however no guarantee's depending on how I'm feeling.

I actually don't have much of an update this week, here's what's been going on the past few days...

Sunday I was admitted to Stanford due to my blood pressure being low and being somewhat dehydrated. I got to remember what it's like to spend the night by myself with a beeping machine and being woken up every other hour to check my vitals! Luckily after two tranfusions and lot's of hydration they let me go home. I had to go back in yesterday to check my counts and will go back again tomorrow to check again. I swear the reason they need to keep giving me tranfusions is because they're taking so much blood out of me with all these count checks! My red count and platelets are steady (because of the tranfusions), however the white count still remains very low. I've been getting daily Neupogen shots since Saturday so any day now we should see those start to climb back up. I'm hoping to stay away from Stanford through the weekend since I'll be spending most of next week there preparing for transplant.

No word yet on the age/gender of the donor or if they have passed their physical exam, hopefully I'll have a better update next week.

I still have lot's of the Lance Armstrong bracelets left so if any of you want some, just email me your address!

Love always,
Erika

Erika's Treatment Update -- Week 4

Hi everyone, hope you all had a nice 4th of July weekend and one or two enjoyable days off from work!

I can't believe it's already Week 4 of my treatment updates, amazing how time flies...

This one should be pretty short, not much change has taken place since last week, I don't think anything could top the eventful Monday I had last week going in for multiple transfusions and hoping on a plane with no more than a few minutes to spare.

Yesterday (Monday), I went into Stanford for chemo. I had a high dose of VP-16 (1,000mg to be exact which is much higher than the 90mg I had 3 times a day three weeks ago). I also had another platelet transfusion so Chris and I were there about 5-6 hours. Everything went went well until I got home, made it to the first stair, and started pucking. That continued throughout the evening until I finally fell asleep. Not how I expected to react to the chemo considering I had done so well during the first round. I woke up feeling much better today however and Chris and I even managed to go for our 1 hour walk this evening :)

My counts (aside from the platelets) have come up, hurray! As of Monday afternoon, WBC = 7.4, Hemoglobin 11.6, and Platelets 18 (before transfusion). I will be starting daily shots of Neupogen this coming Saturday to stimulate my bone marrow into producing lot's of white cells so they don't drop again like they did last week. My dad who can't stand needles is so excited about this since he gets to administer the shots. Any volunteers that would like to relieve some stress for him? J/K.

Good news on the donor situation. My case manager just informed me today that the person has been contacted, has agreed to donate, and has agreed on the transplant date of August 6th!! He/she will be going in for a full physical exam by the end of the week and a few more studies next week and we should be all set to go. I should find out by the end of the week the age & sex of this individual. How exciting!

I've received lot's of emails from people offering to help with rides, meals, visits, etc. Thank you to all who are willing to help out, I'm so overwhelemed by the amount of support. I am currently working with someone on putting together a schedule for volunteer help, so if you're interested in helping at all let me know what days/times are best for you and what you would like to do (rides, meals, visits at hospital). I love having visitors at the hospital, but it can get a little hectic with too many people at once especially considering that the rooms aren't always accommodating to a lot of people, so having a schedule might work a little better. The only restrictions to visitors are that they must be gowned and masked (which they will provide) and no plants, flowers, and/or balloons can be brought in. I will be in the E1 Unit of Stanford Hospital, however I don't know the exact details yet, I will provide them as I receive further news (again I'm not scheduled to be admitted until July 25th).

One more little side note, my friend Abby is putting together a team on my behalf called "Erika's Angels" for the Light the Night walk on October 2nd in Palo Alto. We had a team last year "Snoopy's Steppers," which was a great success and we all had a blast. If any of you are interested in joining us (it's only a 2 mile walk) you can register at www.lightthenight.org under team name "Erika's Angels" or team captain "Abigail Caldwell." If you have any questions please feel free to email me.

Okay one more fun little thing I had to throw in...Lance Armstrong is teaming up with Nike to raise $5 million dollars for his foundation www.laf.org by selling 5 million $1 LIVESTRONG yellow bracelets (yellow is the color of the winning Tour de France jersey). You can only get these bracelets at NikeTown and or on the www.laf.org website and I've already had numerous people ask me about them when they see me wearing one. Chris and I had bought a whole bunch when we visited NikeTown in Seattle and have some extras so if any of you are interested in getting one let me know (I only have youth sizes which fit most women)! Lance's foundation provides support to young cancer survivors and their families.

Well that's it for now until next week...thanks again for all the emails, they definitely make my days a go by faster and make them brighter :)

Love always,
Erika

Erika's Treatment Update -- Week 3

Hi again!

Just a quick update on my visit to Seattle and the upcoming plans for
treatment...

Monday morning I went for a blood count at my doctor's office and he
was completely shocked with my counts. When I told him I was leaving
for Seattle that evening his face turned white and said there was no
way I could get on a plane without at least three transfusions, two
shots, and would need to wear my BMT mask on the plane. So my Monday
was spent (9-6:15pm) at the hospital getting two units of blood and one
of platelets. Definitely not what I expected my day to be like since I
hadn't packed or gotten ready for Seattle. I had 10 minutes from the
time we got home from Stanford to pack and get out the door to the
airport. We were just glad to have made it on the plane!

We arrived in Seattle late that evening and had a consultation with a
non-Hodgkin's lymphoma specialist early that morning. The doctor that
we met with thought that staying at Stanford was the best opportunity
for me since their (Seattle's) protocol would delay transplant for a
couple of months and we wouldn't want to take the risk of my disease
getting uncontrollable and my opportunity for transplant being gone.
She felt that they would want to get me into remission again first
before doing another transplant, however I don't have that luxury since
I don't respond well to chemo and my counts are really suffering from
all the chemo I've already received. Stanford on the other hand is
willing to do the transplant without getting me into remission which is
what I need. The good news is that Stanford has found a donor in the
bone marrow registry which is a much better match than my dad/sister
and they will be using him/her instead. I don't know anything about
the donor at this point, although I do know that I will be able to find
out their age, sex, and whether they're in the US or abroad.

While I was meeting with my Stanford doctor yesterday we discussed the
possibility of doing another round of chemo before my transplant. On
Monday they had decided that this was not possible since my counts were
extremely low, however yesterday they had started to come up so I was
able to convince him into doing another round. I know you're probably
thinking I'm nuts for wanting more chemo, but basically the more
controlled my disease is the better chance of the transplant working.
I'm willing to take the risk of getting really sick just so my chances
of the transplant working are slightly higher. So as of yesterday,
this should be my schedule for the next month:

July 5, 6, & 7 = more chemo at Stanford

July 12-23 = tests and appointments to get me prepared for transplant

July 25 = admitted to Stanford for transplant

July 26-30 = radiation & ATG (weakens immune system)

Aug 2-5 = radiation

Aug 6 = transplant

Since our appointment was so short in Seattle, Chris and I took
advantage of the rest of the day and went to the space needle,
downtown, Pike's market, and the 1st Starbuck's. We ended up having a
great day, it was a nice mini vacation :)

Well that's it for this week, I'm actually headed back to Stanford
later this morning for some more tests. Hope you all have a great 4th
of July weekend!!

Love always,
Erika Arredondo