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.

Moving Right Along

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

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!