grateful/courageous/hopeful

2 years old!

2011-11-05T20:34:00.000-07:00

It's that time again. I'm happy to report that today I'm celebrating my 2 year bone marrow birthday. Two years ago today I was in UCLA Medical Center receiving a life-saving allogeneic stem cell transplant, courtesy of my sister's generous donation.
Here's a little reminder of that day: http://cassiereed.blogspot.com/2009/11/landmark-day-for-cassies-recovery.html
I'm feeling good these days, still see my Oncologist every 1-2 months but my blood tests are fine and my most recent PET CT scan shows no signs of cancer for which I continue to be grateful.
I'm enjoying being back to work and Kurt and I are looking forward to a trip back to the midwest for the holidays to see our families.
We recently finished a season cycling with Team in Training raising $8,000 for Leukemia & Lymphoma Society in support of their goal of making cancer patient's lives better and finding a cure. Kurt and I trained for a 100-mile cycling event in Moab, Utah on September 17th. It was a great experience and we met a lot of amazing people. Unfortunately I broke my thumb 3 weeks before the event so I couldn't complete the ride.
But I was happy to cheer Kurt and the rest of the team through the ride and across the finish line.

We were excited to make a stop at the Grand Canyon on our way to Utah. It was amazing!

Love and best wishes to you all!

For each new morning with its light,
For rest and shelter of the night,
For health and food, for love and friends,
For everything Thy goodness sends.
~Ralph Waldo Emerson

Switching Gears

2011-07-28T19:50:00.000-07:00

A lot of good things have happened in the past few months! Last time I posted it was November and Kurt and I were just starting to plan our wedding. After an active few weeks of planning, we were married in Wheaton, IL, Kurt's hometown, right after Christmas on December 29th. We had 80 family members and close friends in attendance and the day was perfect. We had spent Christmas with Kurt's family and my family drove up from Ohio for the wedding. Friends from California, New York City and Detroit even made the trip! We had a beautiful winter wonderland for the event, as we were married in Kurt's parents church by Kurt's dad, a retired pastor. His mom lent me her red wool cape which turned out to be ideal for the snowy backdrop and pictures! We felt blessed to be surrounded by such love and to have the help of Kurt's parents and sister with the planning since it was a destination wedding for us! We only had a couple months to plan but it all came together. Kurt's dad read a prayer last read when Kurt's grandpa, also a pastor, read it at the wedding of Kurt's parents. That will always be a special memory.
The reception was a lot of fun. I especially loved seeing our parents, siblings, nieces and nephews dancing. Kurt and I took two crash course dance lessons right before the wedding and danced to John Legend's "Stay With You." We had a great DJ who had me dancing all night long! Kurt had planned a really special tribute to my mom, who passed away of breast cancer when I was 12. His thoughtfulness and words will always be another special memory. He included my sister and my aunt in the tribute.

We made a week-long stopover in Colorado for our honeymoon. And then returned to California and back to reality.

I had plans to go back to work in the beginning of this year and was happy to be offered my job back at RAPP, the advertising agency that I worked for when I got sick and who held that amazing benefit event for me while I was going through treatment. I started back to work part-time in late February and went full time in early April. It's now been 3 months back at work and sometimes it feels like I never left. But I'm reminded often that the last 2 years weren't just a dream and I'm thankful every day that I'm well enough to work.

In anticipation of going back to work, Kurt and I adopted a little poodle from the shelter by our house as a friend for Piper. We named her Pixel and she makes our crazy Piper look mellow and well-adjusted! She has a lot of energy and many bouts of separation anxiety, but she's a happy little addition to the family. It was touch and go in the beginning, but the two are getting along pretty well now and have moments where they seem to enjoy each other.

That's the update for now. I still have check-ups with my oncologist every month and PETscans every 6 months to make sure that stupid cancer stays away. Kurt and I in the midst of a big undertaking now, that involves 100 miles and two wheels. The title of this blog post is a hint.... stay tuned!

Happy Birthday to Me!

2010-11-05T23:08:00.000-07:00

Today's my Bone Marrow Birthday. 1 Year old today! A year ago i was in the hospital having my stem cell transplant. I had just finished 5 days of high grade full body radiation and 4 days of intense chemo, wiping out the last of my old, no good bone marrow. And my sister's healthy, ready-to-fight stem cells were given to me as my intravenous first step on the path to new bone marrow and good health. I spent another 3 weeks in the hospital after that, waiting for my counts to come back so that it was safe to go out into the world! At that point my first bone marrow birthday seemed very far away. Here's a link to the video Kurt put together showing my transplant.
http://cassiereed.blogspot.com/2009/11/landmark-day-for-cassies-recovery.html
Watching that video now is a little surreal. At that point I didn't really know what the next 12 months were going to bring and the previous few months leading up to that were a blur of hospital stays, chemo and medical procedures.

Fittingly, I had an appointment at UCLA today and thought it only right that today should be the first day that I venture back to the 6th floor Hematology/Oncology unit of the hospital where I spent most of August, September, November and part of October 2009. It's where I received my stem cell transplant one year ago. The clinic I go to for check-ups is in the attached building next door so that hospital always seems to be looming nearby. And I'm always very aware of the hospital and that floor when I'm in the vicinity because I've always known that the time would come when I would go back. And, today was it. So I did it. Walked into the hospital, pressed that elevator button and stepped out to that familiar floor. It still looks the same and smells the same. It's quiet and I was relieved to not recognize the person at the front desk because it meant I could just walk past all the closed patient doors, all incognito-like, following the path that I made many times before. Back when 2 laps around the wing a day was an accomplishment for me and my friend, the IV stand. So today I made my lap, went back out toward the elevators and took one more look out the large panes of glass overlooking LA.

But then I took one more peek back and saw David, the care partner who used to make extra trips into my room on Sundays to watch NFL games with me and who helped me get through a scary couple of days when I thought an infection and elevated temperature would never go away. And I had to say hi. I'm happy to say he didn't recognize me right away. I look a little different now than I did then. More hair and more alive! And then I saw Kristin, the nurse who wisely persuaded me to finally get the PICC line in my arm after torturing myself with weeks of chemo through regular IVs. And Jackie who always called me "Dahling" and who administered my first chemo ever. It was great to see them and they said it was great for them to see me because they rarely get to see what happens with patients after we leave. And sometimes they only hear the worst. And then the most amazing thing happened. Jackie told me she had a patient who was "Day plus 1" which I quickly reached into my transplant-speak memory to remember that meant her patient just had a transplant yesterday. And Jackie said her patient was having a really hard time and just wanted to go home, so would I consider talking to her. To which i said, "Of course!".
And I was given the best birthday present ever. I talked to Diana, my fellow stem cell transplant recipient, for about twenty minutes and told her I knew exactly how she felt and that she was going to get through it. That she was exactly where she needed to be right now, surrounded by the doctors and nurses who saved my life and who were saving hers too. And "life" will still be there for her when she gets out, only better. (And then I told her I was jealous of the mini-frig in her room because they didn't have those when I was in those rooms longing for a cold beverage to sooth my raw throat! If those first things didn't help her feel better, then maybe that last one did!) I hope I helped her as much as she helped me.

I came home to beautiful birthday flowers and a peppy little balloon from Kurt and his parents.
Then Kurt and I took Piper to the dog beach, one of our favorite places in the world. And Piper smiled the whole time, playing fetch until her heart's content while the sun set.
And then I had a grande, non-fat, no-water Chai Tea Latte from Starbuck's on the drive home!
Then we went to dinner and a movie. (Megamind... I highly recommend it! Will Ferrell's a genius!)
All the things I couldn't do a year ago. And that was my perfect birthday.
One down and many, many more to come!

So what come's next? Wedding planning! Kurt and I got engaged 3 months before I was diagnosed, so our wedding planning was replaced by cancer treatment. We've decided to stop worrying about the where/how/when about it all and just do it! Took a little nudging and burst of inspiration from Kurt's sister, Lisa but we've realized that there's no need to put off the good stuff. Life's too short. We'll be getting married this December 29th in his hometown of Wheaton, Illinois. It will be small and perfect. Our families and close friends will be there. And it's in the Midwest, which will always be our homeland.

Now that's the latest. I'm still not 100%. I get tired and winded more easily than I'd like and I have good days and not-as-good days. But that's ok. I'm getting there.

Anniversaries

2010-08-28T21:32:00.000-07:00

A year ago today I was discharged from UCLA Medical Center after my 2nd round of chemotherapy. Kurt's parents, Ron & Carol, were out from Chicago to stay with us at that time and they picked me up from the hospital while Kurt was at work. I had been admitted almost 2 weeks before, and that was one of my longer hospital stays. The chemo drug I was given during that stay was methotrexate which has a tendency to stay in the lucky recipient's system at unsafe levels for days after it's administered. For some reason my body really didn't want to let it go so I had an extra long stay while the level went down to a less toxic level. Ron & Carol had arrived 10 days before on 8/18/09 and during their first visit to the hospital that night (directly from the airport) they watched Kurt shave my head. At that point it was a relief for me because I was tired of picking strands of hair off my bed, clothing, etc. But for them it must have been pretty horrifying. I still feel bad that they had to see that and that Kurt had to be the barber. But I'm grateful they were there to hold my hand and help me stay positive.

And there have been quite a few anniversaries recently. Starting with July 21st, the anniversary of my cancer diagnosis. July 28th was the first time I met with my oncologist, Dr. Rosove, who told me that if I had to pick a cancer I picked a good one. (It sure didn't feel that way at the time.) Then 8/5 was the anniversary of my first hospital admission for the 1st chemo round. And 8/10 was the first time I was discharged from the hospital. They're just going to keep coming and every anniversary milestone brings back memories of where I was a year ago, which is emotional and a bit of a trip down "bad" memory lane. But it's a good thing because it also reminds me of how far I've come. And we'll soon be coming up on some of the more positive anniversaries in the next couple of months.... like the day I found out I was in remission and day of my stem cell transplant. Of course I plan on having many more anniversaries for many years to come!

And then, August 11th was my birthday! 33 years young. In my recent adult-life I never felt like celebrating turning another year older. But this year was a little different. I suppose a brush with mortality will do that to you! So we had a little party, I got to see some friends I haven't seen in a long time AND my friend Alison made me the most amazing birthday cake ever! Complete with working volcano to fit the tiki theme. She's quite the artist!

We also had a really nice visit a couple weeks ago from Kurt's sister and two of her three kids, Nic and Natalie. They came from Chicago and it was great to spend time with them before school starts. While they were visiting I had to go in for another PET scan to make sure the Lymphoma is staying away and I'm happy to say the scan came back clean again! I can't help but be anxious about these scans but getting the good result and peace of mind almost make it worth the anxiety. I'll have these scans every 6 months for a few years.

I hope everyone enjoyed the summer. Love and good wishes to you all!

Catching Up

2010-06-22T20:55:00.000-07:00

I've been asked by a few people when the next blog update would be coming and here it is! I'm humbled and somewhat embarrassed to find out that people actually read this little blog of mine and are still interested! Things have calmed down a bit, compared to the last year, that is. If they hadn't then I'd be in the looney bin by now. I'm still not able to go back to work, but I hope to be returning by the end of the summer once I build up my stamina, get off some of my medication and get my doctor's visits down to a couple times a month instead of every week. I still get tired after a busy few days but my recovery time needed is becoming less and less. It's been 7 1/2 months since my stem cell transplant so I now have the immune system of a 7 1/2 month old baby. Actually I think a 7 1/2 month old baby is ahead of me at this point because I'm still not allowed to have any immunizations. I'll have to get all the basics again (measles, mumps, etc.) probably around the one year mark. Soon I'll have to start giving a pint of blood every month to get rid of some of the iron that's built up in my body from the many blood transfusions I've received. Iron is one thing that the body cannot get rid of naturally. How things change! I've come a long way from low red blood cell counts and needing blood transfusions every few weeks.
So, it's been a while since my last entry and the last couple months have been pretty eventful. My recovery is still coming along nicely. I've had a lot of time to reflect on the last few months, which is both therapeutic and frightening. I had some issues with my rejection in my liver and decreased kidney function again, but my doctors were able to control it with increased steroids and anti-rejection drugs. Because of that, my cheeks and chin are making me look a lot like a bloated chipmunk, but I have to keep reminding myself that it's temporary. I just wish my cheeks didn't feel like they're ready to explode! Just one more crazy side effect to add to the long, bizarre list of new things I've experienced over the last year.
Now, where to start.... My friend, Nikki's wedding in Ohio was wonderful. She was a glowing bride and she and her husband sure know how to throw a party! I was honored to be a part of their day. Here's a picture. It was a great interruption to my routine at home in California and a great excuse to have a little fun for the first time in a few months.
After we got back to California those pesky liver and kidney issues came up again, so that's when the doctors increased my medicine and after a few weeks that helped. I've kept busy with hobbies, organizing and sorting through medical records and playing catch-up with a lot of things. I also attended a cancer survivor workshop at UCLA where I learned a lot about how to stay healthy and life after cancer. It's nice to be entering this new "survivorship" phase. Definitely beats the heck out of the "treatment" phase.

Kurt and I are also trying to get some exercise and have started bike riding. I have been having leg and hip pain from the steroid and from leftover muscle/bone damage where the tumor was in my right hip/leg. I feel like the bike riding is helping strengthen my legs and controlling the pain. Though she tries to attack any bike, scooter or skateboard we see on the street, surprisingly Piper (our puppy dog) has a newfound fondness for bike rides too. Here's a picture of Piper and Kurt biking down our street. And a picture of her in the basket after she's decided she needs a rest.

Kurt and I just got home from a trip to Chicago and Ohio to visit our families. Kurt's oldest nephew, Taylor, graduated from high school and we were able to go to his open house and spend time with Kurt's parents, sister's family and brother's family. It was a really nice time and good to see them back in the midwest. Kurt's parents, sister and brother have all been out to California to help and support us during my cancer treatment and recovery. For most of their visits I wasn't feeling that great so it was good to see them at this point in the recovery. I also had slightly longer hair to show off too! I love Kurt's family and feel honored to become an official member of their family soon. If we ever get around to planning a wedding, that is!
We completed the midwestern tour by driving down to see my family in Ohio to go to my family and high school reunions. I have to admit that I wish I was looking and feeling more like myself, but as Kurt kept reminding me, people are just happy to see me and don't care as much as I do or think they might. (Again, what would I do without Kurt to keep me sane!)
We also found time to fit in a Reds game in Cincinnati. They played the Dodgers and we figured out a way to represent my hometown team and our new hometown team... see pic to the left. No bias here. The Dodgers won the game, if you're interested. My Dad, stepmom, sister, brother-in-law, niece and nephew also went to the game. It was a nice time and reminded me of how much I used to love going to Reds games when I was growing up in Ohio. It was always such a big deal and special treat!

It was great to catch up with some old friends at my high school reunion. I think we were all taken back to those good ol' days at National Trail High School. As promised, here's a shout out to Michelle, Kristina, Lorie and Nikki! You ladies touched my life early on and are still at it today. I'm extra appreciative to have you in my life now and immensely thankful for the support and thoughtfulness you showed me during the past few months. I count you all among my many blessings and helping hands that got me through and are the reason I'm standing here today. And to hear about your kids, families and how far you've come since high school was inspiring!

We also went to our annual Reed family reunion and were able to see a lot of family that I haven't seen in quite a while. It was a really nice time. Here's a picture of the whole crew. And a picture of Piper and her Aunt Penny, my Uncle Eddie's dog, who was the inspiration for us getting Piper almost 6 years ago.
And now, we're home and I'm resting up. Kurt's back at work and I have a check-in with the doctor tomorrow. Hopefully my blood levels are good and my steroid dosage can keep going down. Gotta get these cheeks down before the chipmunks get jealous.

I hope you're all doing well and have had a good start to the summer! More updates to come!
- Cassie

100 days+

2010-03-13T22:10:00.000-08:00

FROM CASSIE: In mid-February I hit the 100 day mark since my stem cell transplant, which is the first milestone in the transplant world. It means that I'm past the worst of the procedure and on the path to recovery. I'm still reminded that full recovery is slow and it could take a year or two until that will technically happen. But 100 days feels good! I have hit a couple roadblocks since. That pesky graft vs. host disease was the latest to rear again in my liver. It brings on some annoying side effects: itching, fatigue, yellow eyes (to name a few). And some of my steroid and anti-rejection medications have been increased again which is frustrating, especially the steroid since that gives me a bit of a chipmunk/puffy cheek and makes me extra hungry. Not a good combo. Kurt says the good news is that I can now bench press 350!

But, overall, things are going well. I'm needing blood transfusions much less frequently which means that my sister's stem cells have grafted and are now my own cells starting to produce red blood cells and other good things as they should. I'm getting more energy every day and soon my doctor's visits will hopefully go down to every 2 weeks instead of every week. My hair is growing in nicely, though not quite fast enough for my taste. But I venture out without a hat now, which is exciting. It's still a little shocking when I see my reflection in the mirror but I'm trying to embrace the idea that I'll get to see my hair in all stages of length and see what sticks. I never would have been brave enough to chop my hair off before so I might as well take advantage of it. I'd say right now I'm at the Julie Andrews in "The Sound of Music" stage. Which, I have to say, I'm enjoying far more than the "GI Jane" stage.

My friend, Nikki's, wedding is next weekend so I'll be traveling back to Ohio to be one of her bridesmaids. I'm so excited to be part of her special day and look forward to what will hopefully be a nice, easygoing trip, filled with wedding festivities (dancing!!!) and visiting with family. My dad and sister are putting together a little family gathering at my favorite Ohio pizza place so I'll get to visit with my family and enjoy Pizza King pizza at the same time. What more can a girl ask for?! Kurt will be going with me, of course, so it will be our first official post-cancer/transplant trip. We're pretty excited to get back another piece of normalcy.

Kurt's brother, Kevin, visited us last week from Michigan and we had a really nice time with him. We did some sightseeing and lots of catching up. This is a picture from our outing to Venice Beach.

I wanted to end with something that's been on my mind more and more lately. As I've met people going through different stages of stem cell transplants, I'm realizing more and more how lucky I am that my sister was my bone marrow match. (Thanks again, Carrie!) One day at the clinic while we were both getting our transfusions for that week I talked to a girl that had a transplant from umbilical cord cells because her siblings weren't a match and a donor couldn't be found on the national registry. She had her transplant a couple weeks before me but was having many more complications than I had because of the lack of a really good match. And there are many people out there that can't find matches at all. If you're interested, adding yourself to the national registry is very easy and painless. You can get some great info at www.marrow.org.

Thanks to you all for for your love and support. And for reaching out through other methods to see how I am when I get a little lax on the blog updates. I'm reminded every day how lucky I am.

Moving Right Along

2010-01-21T11:32:00.001-08:00

FROM CASSIE: Hello again! It's been a while and it seems like a good time for an update. Kurt and I are getting settled back into homelife again after the whirlwind of the last 6 months. My aunt Susan left last week after staying with us for the last month and half to help out when I needed 24/7 supervision so that Kurt could work. We appreciate all the good help and care she provided. While she was here we were able to cross something off her "bucket list" by taking her to the Rose Bowl Parade on New Year's Day. It was a fun, new experience for all of us.

So now it's healing time.... time to heal from the last 6 months of craziness. My doctors look at things in 3 month phases. So, in mid-February I should be able to come off a few of the 12 medicines that I take every day and be out of the woods for some (but not all) of the complications that come up after a transplant. I'll still be on some of the anti-rejection/anti-infection medicines and need to go for regular clinic visits for a year or longer. In another 3 months I should have enough of an immune system built up and the stamina to return to work, which I'm looking forward to. RAPP, the company that I work for, has been amazingly understanding and supportive during all of this. I count my boss and all the employees there as just a few of my many angels making my recovery possible.
Right now I'm continuing my weekly trips to the UCLA Oncology clinic in LA for blood tests and doctor visits. Depending on the blood test results I might get some sort of treatment through IV that day. This week my tests were good except my hemoglobin was low so I needed a blood transfusion. My liver and kidney function has stabilized from the problems I had a few weeks ago. Needing blood transfusions in the first 100 days after a bone marrow/stem cell transplant is normal because I'm still not fully producing red blood cells from my sister's stem cells. And any new red blood cells are being broken down a bit while they destroy any of my own residual red blood cells left in my body. Kurt said it's because my sister and I are both stubborn that our cells are duking it out. But I'm going to let her win this one. ;-)
I also still get weekly visits from a home nurse who gives me another IV of antibodies to pump up my immune system. Right now I have the immune system of a 2 1/2 month old. Pretty amazing. But also pretty young. So I still need to stay healthy and avoid crowds, kids, sick people and people who recently got immunizations. Needless to say, I go through a lot of anti-bacterial hand cleaner.
I received some more good news from my doctor. Barring any unforeseen circumstances, she thinks I'll be ok to travel by the end of March so I'll be flying home to Ohio to be a bridesmaid in my best friend, Nikki's wedding. We hadn't been sure whether I would be able to do it so it's very exciting to make plans to be a part of my friend's special day. It's now Operation "Grow Hair" for the wedding since I'm hoping to have a pixie cut by then so that I don't have to fool around with a wig. My hair's growing back pretty fast. Right now I have a bit of a GI Jane length going on, so keep your fingers crossed!
Also, Kurt's nephew Matthew is doing a project for school on Lymphoma. We were touched when he told us because it's just another example of how our friends and family have really rallied around us with support and interest throughout this whole diagnosis and treatment. We look forward to seeing how his project turns out.

I'm keeping busy with taking care of the house and catching up on things that I've missed or missed out on the last 6 months. In between rests, of course. I've been able to see some friends and catch up a bit, which has been nice. I'm even taking a floral design class once a week through the city parks department which has been a good, therapeutic way to do something creative and get out of the house. Some of you know that my mom was a florist so I thought I must have some natural talent in my genes somewhere! We'll see though. The picture here is my take-home from my last class. I'm also toying with learning to make jewelry, crochet and even a little wedding planning! Might as well take advantage of this time that I've been given.

That's it for now. I hope the new year is treating you all well! And I hope to see a lot more of you all this year.

Best Christmas Gift Ever

2010-01-01T22:38:00.000-08:00

FROM CASSIE: My doctors gave me a great Christmas gift last week when they told me we didn't need to stay close to the hospital any more and could move back into our house in Long Beach. After the shock wore off, we made plans to head south ASAP. I realized that I hadn't slept in our house for over 2 months. By the Wednesday before Christmas we were back home and hanging up stockings by the chimney with care. Kurt was quite the Christmas elf dragging a last minute Christmas tree off the lot and home to decorate. We had a nice, relaxing Christmas Eve and day.

I have doctor's appointments every Monday and this week's went well. I had been feeling pretty worn out and still have side effects from all the medication I'm on, but my counts are looking good and my liver function has improved. Kidneys still have a little way to come so I get IV fluids every day at home but I'm feeling better and hoping to get another improved report on Monday. I now have the immune system of a 2 month old and will be getting weekly antibody IVs through February. Feeling stronger every day!

And Happy New Year to all! More to come on that soon. For now I'll just say I'm not sad to see 2009 go. It's been a rough one that I couldn't have made it through without the enormous support of amazing friends (old and new) and family. I'm so grateful. But, 2009, don't let the door hit 'ya on the way out..... actually let it. Here's to a happy, healthy 2010 for everyone full of new beginnings!

Back in action

2009-12-17T23:32:00.000-08:00

FROM CASSIE: Had another stay in the hospital this past week and just got out last night. It's great to be back home (or in our "home away from home" apartment in LA) especially in time for Christmas. My doctors decided to put me back in the hospital because I have some liver function issues due to graft vs. host disease, which is common after a transplant, and lowered kidney function due to the heavy duty anti-rejection medicine I get via IV twice a day. The doctors have always said that "a little" graft vs. host disease is a good thing because it also helps keep the cancer away. So I can't complain. It's basically remnants of my stem cells reacting against all my sister's healthy stem cells inside me. I was in the hospital for about 9 days while the doctors got things under control, did a liver biopsy and ultrasounds and readjusted my medications. While there I had lots of nice visits from Kurt and Aunt Susan and we had time for some Christmas crafts, one of them pictured here. We made bead angel ornaments for Aunt Susan's granddaughters. They looked very sweet lined up in the hospital room window. Here's hoping this is the last hospital stay and that the recovery continues on at this point. I'm feeling better every day and excited for Christmas! Happy Holidays to everyone!

Kurt's Birthday

2009-12-12T17:29:00.000-08:00

FROM CASSIE: We had a great time celebrating Kurt's birthday last week (before the return hospital trip). Here's a picture of the Reed/Brushwyler family complete with silly birthday glasses for all. We all agree that Piper wore them best. It was great to have Aunt Susan out here to help celebrate. She had silly glasses too but, unfortunately, isn't shown since she took the picture.

One step back but moving forward

2009-12-10T12:18:00.000-08:00

FROM CASSIE: Time for an update. I'm back in the hospital for a few days while the doctors figure out why my liver is under some distress. This is common after a stem cell transplant because of all the anti-rejection medicines I've been taking. I had a regular doctor's check-up this past Monday and they decided to admit me after some blood tests for liver and kidney function came back high. I've had quite a few tests and medication changes since I've been back in the hospital so everything should get straightened out in the next couple of days. Peace of mind comes from knowing that the doctors here have pretty much seen it all so it's just a process of elimination and pinpointing exactly how my medication needs to be adjusted. Being back in the hospital isn't exactly where I'd like to be right now I still feel grateful that I was out of the hospital for Thanksgiving and for Kurt's birthday. And I'll be out of here soon... fingers crossed. Thanks for all the well wishes!

A Thanksgiving to Remember

2009-11-29T19:41:00.000-08:00

FROM CASSIE: Kurt and I have so much to give thanks for this year. We're a little behind on updating this blog because, all of the sudden, things got pretty hectic. When I went in to the hospital for the stem cell transplant on 10/26 I was told to expect to be there for at least a month or more depending on how long it took the cells to graft and whether any complications arose. Well, after the transplant on 11/5, my doctors were surprised that my counts started rising after only a few days indicating that the cells were grafting. And ten days after the transplant they were starting to say I could be discharged! So 12 days after the transplant, on 11/17, I was discharged from the hospital and sent home with lots of medication and lots of instructions. This was both exciting and a little bit scary since it happened so fast. Our house in Long Beach is a little too far from UCLA for the doctor's comfort level so we're lucky to be staying at our friend Kristin's apartment in LA, close to the hospital. She's doing us an enormous favor with this "swap" by staying in our house in Long Beach. We don't know how long we'll be here but are prepared to stay at least a couple months. The idea is that we'll be close by the hospital in case any complications arise with me, like fevers, infections or other rejection indicators.

And things are going well. We have quite a little routine going. I get IVs of antibiotics and anti-rejection medicine every morning and every night. Kurt has learned how to do it and is on his way to becoming an honorary nurse, I'd say. He's very good. Kurt's sister, Lisa, came out from Chicago to help us the first week I was out of the hospital and she was a huge help. Her nurturing spirit and good nature made the transition out of the hospital much better for me and Kurt.

A home nurse comes out to give me another IV medicine weekly. I'm beginning to venture out on car rides a little more which feels good. I'm feeling stronger every day and trying to be patient with my progress. Some very smart people keep reminding me that my body has been through a lot. Sometimes I forget that and get anxious to be feeling back to normal right now. My doctors have been happy with my progress at check-ups. And the only slight speed bump has been an infection I picked up which is the reason for the extra antibiotics. Apparently it's common. So right now I have the immune system of a 24 day old baby. But that's a day more than yesterday! It's counted from 11/5, my new bone marrow birthday.

We thought I'd be spending Thanksgiving in the hospital so Kurt and I feel extra blessed to have spent it here together with Piper in Kristin's comfy apartment eating turkey dinner from Kristin and our friends, Stan and Naomi. Life is good.

In other big/huge/enormous news, the Poker Tournament and auction benefit that my company, RAPP, threw last Friday 11/20 for us was a huge success. I wasn't able to attend since I can't be around crowds just yet, but Kurt went and had a great time. I'm so grateful to work at a company that would go to the effort to put on such an amazing event to help an employee in need. Being that employee in need is very humbling (and a little uncomfortable) but it helps to know that everyone who attended had a great time together playing poker and winning great silent auction items. Kurt and I are so thankful and overwhelmed by the support and outcome. Here are some pictures from the event taken by our friend Jasen: http://gallery.me.com/jasenreyes#100162

I hope you all had a wonderful Thanksgiving enjoying friends and family! Until next time.....

Cassie and Piper

2009-11-09T17:17:00.000-08:00

cassie and piper on the way to the dog beach - 2005

Friends of Cassie Reed Fundraising Event Info

2009-11-09T16:24:00.000-08:00

Some of you have asked for information on the benefit that Cassie's workplace, RAPP, is generously throwing. Here you go:

Join us for a night of poker and prizes where every dollar raised goes to support our friend & colleague Cassie Reed in her fight against lymphoma.

Friday November 20th, hosted at the RAPP offices
222 N. Sepulveda Blvd, Suite 500, El Segundo, CA 90245

Bar opens 6:30pm and first deal at 7pm
Minimum $50 donation & cover charge (please bring cash or check)
Beer & food included
Prizes awarded to finalists

Visit facebook.com/AllinforCassieReed to:
• Get the latest event details and read the complete tournament rules
• Volunteer to help & donate items for the silent auction

A landmark day for Cassie's recovery

2009-11-06T00:01:00.000-08:00

Happy Birthday Cassie

2009-11-05T16:11:00.000-08:00

FROM KURT: Cassie's stem cell transplant began at 11:00 am today. The whole process took about 30 minutes and everything went smooth. Cassie is doing great and very excited about this landmark day in her recovery. Thanks everyone for your support!

Final day before stem cell transplant

2009-11-04T13:40:00.000-08:00

FROM KURT: Cassie has hit a wall today. She is very weak, nauseous and has a lot of pain in her throat. This is to be expected because of the treatments she has received to prepare for the transplant. All her blood level are nearly at 0 which is what the transplant requires. If the doctors can get her nausea under control she is a go for the transplant. Please keep her in your thoughts and prayers for her big day tomorrow.

A much needed rest

2009-10-31T13:58:00.000-07:00

FROM CASSIE: Words can't describe how amazing Kurt has been throughout this whole ordeal. Without his love and support I don't know how I would get through this. I can't wait to call him my husband. I thought I'd post a picture of him getting a well-deserved Halloween nap in my hospital bed today. He might not be too happy about it (sorry, Kurt) but it helps me to know that I can share something with him that gives him a little break from the madness. ("Rosove", the teddy bear, was my addition to the shot.)
Today is "Day minus 5" in transplant-speak which means there are 5 days until I receive my stem cell transplant next Thursday. I'll have some chemo every day until then to wipe out my marrow and make room for my sister's fresh, ready-to-fight cells. Pretty amazing. As always, the doctors and nurses here at UCLA Med Center are taking very good care of me.
My dad went back to Ohio today and it was bittersweet to see him go. We had a nice long visit and he was a great help and support to us. Piper was happy to spend some quality time with "grandpa" too.
Kurt's parents are coming out from Chicago again this Tuesday for 9 days. It will be great to have them here. Their positive spirits, unending support and energy are a great source of strength to me and Kurt.
Until next time.... Happy Halloween to all! Stay safe and eat lots of candy.

Allison's 5th grade G.I.F.T. class rivals Hallmark

2009-10-28T21:30:00.000-07:00

FROM KURT: Cassie received a beautiful and creative array of get well cards from Sherry's daughter Allison and her class today. Sherry and Kim are Cassie's cousins back in Ohio. They have done so much to support Cassie. They were both also tested to see if they were a match to be marrow donors. Their mother Susan has been out to stay with us to help and she will be coming out again for two months to be Cassie's care-partner while I am at work. Her cousins and aunt are like sisters and mom to her. This was a heartwarming gift to get after her second day of radiation. The radiation treatments have made her very sleepy but she is comfortable and her spirits are good.

Thank you 5th grade G.I.F.T. class.

This cancer is about to get a beat down

2009-10-26T17:50:00.000-07:00

FROM KURT: As one of the trainers that has been helping us, my Mom is shown here bravely playing the part of cancer. Cassie is all checked in to the hospital. She left her boxing gloves at home but brought the eye of the tiger. Her room has a beautiful ocean view which will be nice for the month long stay. Here is her new room info.

Ronald Reagan UCLA Medical Center
757 Westwood Plaza
Los Angeles, CA 90095

Room Number 6153
Room Phone 310.267.6156

Cassie is back in the hospital

2009-10-26T13:13:00.001-07:00

FROM KURT: Cassie is back in the hospital to begin the transplant. Donald and i are here with her. She just had quick 45 minute procedure to place a catheter in her chest. The procedure required she be put under anesthesia. Cassie feels good and the doctors told us everything went very well. She had a very nice weekend with friends and family. On Sunday she got a pedicure with her good friend Julie, took a boat ride with her Dad and had her favorite fondue for dinner.

The Cancer's Gone! Cassie's follow up PET scan results are good!

2009-10-23T19:50:00.001-07:00

FROM KURT: Cassie had a follow up PET scan on Wednesday and the results still show no sign of cancer. With this positive review and the donation from Carrie we have a green light for Cassie to start the transplant process on Monday. This is all good news but it's hard to be excited because of the grueling road ahead for Cassie. The first 8 days of Cassie's next hospitalization include 2 days of chemotherapy and 4 days of overall body radiation just before receiving her sister's cells. The recovery for this procedure means Cassie may not be back to our house for 3 months. One month at the hospital and 2 months staying minutes from the hospital in LA. So why go through all this when Cassie is in remission? Fortunately, this can be answered by thousands of stem cell transplant recipients that had Cassie's same diagnosis and have gone on to live long lives, free of relapse. Without the transplant, risk of relapse is very high.

Today we said good-bye to Carrie. She is happy to be going back home and I'm sure her husband and kids feel the same way. We are so grateful for the life saving gift she has given Cassie. Cassie's dad is here with us for 10 days and he will be helping make this weekend a special one for Cassie.

collection day

2009-10-20T22:29:00.000-07:00

FROM CASSIE: Today was a big day and so much has brought us to this point. A lot has happened in the last 3 months and I'll try to be quick in summing it up. Being diagnosed with lymphoma on July 28th solved the mystery of the mysterious leg pain I had been feeling for much of this year. Since this particular lymphoma was aggressive, it had to be treated aggressively with in-patient chemotherapy until I was in remission and then a bone marrow transplant. After one full round of chemo which required 38 days (and long, sleepless nights) in the hospital I found out I was in remission on September 18th! My scans showed that the cancer, which had previously been in my leg and various lymph nodes, was gone. Many people require more than one round so I'm extremely lucky.... and grateful because chemo is not as fun as it sounds. And it doesn't sound fun.

Now on to the bone marrow transplant. While the chemo train was moving, the search for a donor was also in full swing. The first stop was my only sibling, my sister Carrie, who lives in Ohio. There's a 1 in 4 chance that a sibling will be a match. After a cross-country special delivery of blood for testing and a few weeks of high-tech matching, cross-matching and fancy scientific mumbo jumbo, we found out that she was a match for my marrow on September 18th, the same day we received the remission news. Quite a day! I was released from the hospital on September 24th and sent home to recover from the previous month and a half's events while waiting until preparations were in place for the transplant. And the biggest and most important preparation was getting my sister out to California ASAP. Which brings us back to today-- Collection Day!

My sister and I spent most of the day at the hospital while she underwent hemapheresis, a very fancy term meaning that for 3 hours her blood was circulated through a machine that separated out (or "collected") her wonderful, healthy stem cells that I will receive during my transplant. You gotta love modern medicine. I owe her big for this one. I'm not sure how I'll ever repay her, but I'll have plenty of time to think about it when I check back into my home away from home, UCLA Medical Center, next Monday, 10/26 for the transplant. Nice segue, right? I'll be there for at least a month to get a dab more chemo, a dash of radiation, then the transplant on Day 9 and a couple weeks (or more) for the cells to work their magic. Then I'll need a few months recovery and should be good as new. That's the plan.

Kurt and I will do our best to keep this blog updated through the remaining days of this not-so-fantastic voyage. We've been overwhelmed and humbled by the outpouring of support we've received from our families, friends, workplaces, neighbors, doctors, nurses. We're extremely grateful. Being diagnosed with cancer certainly wouldn't have been my first choice of methods for gaining a greater appreciation for life and those in it. But it sure is effective.

Thanks so much to all our family and friends who are helping us get by and get through.