Well here I am again. It's looking like this is now an annual ritual-- writing a blog post on my bone marrow birthday to say that I'm moving along just fine and life is good. Three years ago I was given the gift of a second life. The good nurses and doctors at UCLA replaced my worn-out Lymphoma-riddled stem cells with my sister's healthy cells, saving my life and allowing me to happily say that I'm still cancer-free three years later. My last PET CT Scan in August showed that I was cancer-free so my sister's stem cells did their job. I'm still on a small amount of daily anti-rejection medicine and I go to UCLA for regular check-ups every couple months.
So I'm happy to say that, relatively speaking, my medical life is pretty boring these days.
In other news, I've started a new job, completed a 100 mile bike ride around Lake Tahoe, returned to snowboarding, played golf for the first time, spoken in front of 300+ people at a Leukemia & Lymphoma Society event, celebrated my first year of marriage with Kurt, traveled to 5 states and made even bigger travel plans for next year, hosted a fundraiser for LLS with Kurt (where we raised over $5K!)... all in the past year. And I'm just getting warmed up.

I look forward to sharing my story with people at LLS events in the coming year and raising money for this worthy cause. I'm excited to celebrate 2 years of marriage with Kurt in December. I look forward to spending the holidays with my family and Kurt's family in Ohio and Chicago. And a trip to Europe is in the works for next year with Kurt and his parents. I look forward to all the little and big things that will come my way. If I've learned anything it's that life is full of surprises.
The name of this blog won't be changing since I'm more grateful and hopeful than ever before.  Every day I'm reminded of how lucky I am to be here. Though some days it takes a few reminders for me to see that through daily stresses and worries. I'm hopeful for the people who are fighting cancer and going through treatment today because I know too well what they're going through and hope that one day no one will be told that they have cancer.
Until next time... Good health and good wishes to you all!
Cassie

2 years old!

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

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!

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

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

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+

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.