Spring is Here - Finally!

It is a beautiful day in Baltimore. Spring is finally here after a long and arduous winter. This kind of weather makes everyone feel more energetic, don't you think?

I had my oncologist appointment with Dr. Doug Smith on April 10th. While he has big shoes to fill in Dr. Carraway's absence, he seems like a really nice guy and one that I will get along with just fine. I like that he's willing to give me his email address and he actually responds to any questions or concerns immediately.

As usual, I had my blood work done prior to my appointment. All of my counts were right where they were supposed to be, except my protein levels (the immune system makes these proteins) - they are still lower than normal and have been for about a year. Called Protein-Losing Enteropathy, this is an  indication that something might be going on in my gut. My GI doc, Dr. Linda Lee, ordered two tests - a specialized blood test, (my levels were fine which is good), and a stool-collection test (ugh!) that indicated that I was in fact losing protein (not good). An endoscopy, which examines the upper intestinal tract, was ordered with unremarkable results. The next step is a Capsule Endoscopy which means I will swallow a camera in a capsule that will take hundreds of pictures of my lower intestine (from my stomach down) to see if there is any kind of problem. Not sure when that is going to happen, but it certainly sounds interesting. I'm just wondering who is going to fish that camera out once the test is complete!  Will keep you posted.

Five Years and Counting

March 13th was the 5th anniversary of my leukemia diagnosis and I must say, I've been doing pretty darn good for an old broad. I reflect back on that fateful day in 2009 when I received the news--I had Acute Lymphocytic Leukemia in blast-crises stage. I was scared and exhausted from all the poking and prodding that commenced. The only thing I was able to control was my thinking, so, I chose to hold onto the notion that I was going to be okay; that I wasn't going to die. I believe that positive attitude made all the difference.

Today I live a normal, happy, healthy life, at least for the most part. Having leukemia probably aged me a bit; I know it definitely changed my thinking about life's big questions, so whose to say I wouldn't have encountered the same minor health issues I'm facing today even if I hadn't gotten leukemia. Geez, I'm not getting any younger! Everyday I count my blessings, cherish my friendships, and love spending time with my family - they are what's important.

My next oncology appointment is April 10th, 2014 when I meet my new oncologist, Dr. Doug Smith. In a previous post I wrote of my heartbreak of my beloved Dr. Carraway moving to Cleveland - oh, how I miss her. I still go to JHH every 4 months for blood work even after 5 years. I am hopeful that this time my appointments will jump to every 6 months. God Bless All!

Look for more news of my upcoming Leukemia Lymphoma Team in Training Fundraiser to take place this summer.

Three Years of Good Health

March 13th, 2012 marked my three year anniversary of my diagnoses of leukemia. I am ecstatic to write that I am healthy and happy and grateful for every breath I take. My brother is also doing just fine.

I had an appointment with Dr. Carraway the other day and she is pleased with my progress. What doctor wouldn't enjoy a positive outcome? She didn't order a bone marrow biopsy again this time, but will have my blood tested for the BCR-ABL marker that alerts her to any changes in regard to leukemia. Those results won't be in for about a week but neither of us is worried. She also felt for an enlarged spleen which sometimes is an indicator, but once again all is well.

I continue to meet with a nutritionist to try to sort out and learn what I can do to get my digestive track back on track. I have removed gluten and dairy/lactose from my diet and have shown much improvement. Its a challenge though, especially when we go out to eat. I discovered gluten-free beer and a gluten-free vodka. Fortunately many stores around here carry such products.

So things continue in the right direction. I feel truly blessed.

A Quick Update

Not much to report except that things continue to go well. Dr. Carraway referred me to a Dr. Linda Lee who is a GI doctor because I was still having lots of problems with digestion. We hit if off immediately. She is very out-spoken and matter of fact, but she believes in treating her patients holistically, which I am totally in favor of. The one thing I don't need is another medication. She has confirmed my suspicions that I have IBS (Irritable Bowel Syndrome) which is probably a result of my body going through transplant and from the medications that I need to take daily. She explained many things to me in regard to IBS and how my body actually works, and about hidden food ingredients that I should avoid -one being high fructose corn syrup and certain fruits. She then referred me (at my request) to a nutritionist who also practices holistically. Wow, what a difference she has made in my life. I no longer live in fear of having to run from a restaurant after eating something that I shouldn't have. She recommended an over-the-counter all-natural supplement that is a probiotic and it has changed my life forever! That doesn't mean that I am not super vigilant about what I eat because I am, but overall I think this supplement it a huge factor in my overall comfort and good health.

Thankfully, there are many foods out there that are gluten-free and lactose-free, but I have taken to making my own bread and other baked goods. I have even found a couple of gluten-free beers and a good gluten-free vodka so I haven't had to give those things up. My biggest challenge comes when we go out to eat, but I think I am managing quite well.  My next nutritionist appointment is March 7th so that we can figure out the next steps. My next oncology appointment is March 8th.

Most Recent Oncology Appointment

On October 27th I had my most recent oncology appointment with Dr. Carraway. While my white counts remain consistently below normal, she doesn't seem worried since my neutrophils are above normal.  The low count is probably a result of my oral chemo which I continue to take daily.

I am still having some stomach problems though, cramping and all that goes with it. I've been tested for Celiac and thankfully do not have that, but there is some speculation that I may have a gluten sensitivity.  Coupled with lactose intolerance I have a lot to learn about reading nutrition labels.  Dr. Carraway also tested me for c-diff (colitis), CMV (which I had once before), and a couple of other bacteria infections that might be lingering from my transplant.  She has also not ruled out Graft Versus Host (transplant rejection). I guess this is just the way life is going to be for me.

I am also pleased to report that I no longer need any more Bone Marrow Biopsies done!  Yeah!!!  Last Thursday and from now on I will be getting a specialized blood test (Sorry, I can't remember the name of it) that will provide indications if something is amiss - not that she or I think that there will be any problems.

So, I'm feeling quite pleased with things from a health standpoint and look forward to spending another wonderful Thanksgiving with my family.  Blessings to you all.

The Baltimore Marathon

Well, the Baltimore Marathon was this past Saturday, October 15th and other than a lot of wind, the weather was nearly perfect.  Stephanie did well in her time and finished feeling tired, but pretty good overall.  Below is a little something that she wrote to thank everyone again for their support, and to express her sentiment about what it feels like to be involved with such a worthy cause.  I was on-hand this time, not only as a spectator, mother, and supporter, but also as a volunteer.  My friend, Jackie and I spent a good part of the day setting up and handing out water and Gatorade at mile 12/25.  It was a very rewarding experience for both of us.  We were then able to walk to the finish line to meet Stephanie and two of her friends, Flo and Marie, who were first time marathoners.

 From me to those who donated – Thanks for your support and generous donation to Stephanie’s efforts.  Without people like you, the Leukemia and Lymphoma Society wouldn’t be able to make the strides that they have in curing blood cancers.  These in-roads have been instrumental in also finding cures and treatments for other types of cancer.  From the bottom of my heart, I appreciate it.Love, Bev

Baltimore Running Festival!
by Stephanie Neukum on Saturday, October 15, 2011 at 8:27pm

The Baltimore Running Festival was today. I just felt a need to type up a little note and thank everyone for the good wishes and support. You might know that I did the Disney marathon in January, as well. For both events, I trained with Team in Training and raised money for the Leukemia and Lymphoma society. It was really the idea of raising money for this great cause that got me started. My mom was diagnosed with leukemia in 2009 and had a bone marrow transplant in May 2009. I’m happy to say that she is doing great and is expected to life along, full life. But, it certainly was scary when she was first diagnosed. Great strides have been made in the treatment of blood cancers. Survival rates are up, but there is still a lot to be done. I wish every family could have the good outcome that mine has had.

Anyway, for some inexplicable reason, after Disney, I thought I would keep going. Maybe it was because the cause is so dear to me, or because the people involved with TNT are so great and supportive. Maybe it was partly because doing things that are hard to do is immensely satisfying. Just maybe, I like to have a project that takes me out of my comfort zone.

Thank you, Baltimore, for cheering and clapping for strangers today! You kept me going.

Thanks so much to friends and family for the supportive notes and posts these past few days. Especially thank you to those who donated money. And if you didn’t donate this time, don’t worry I’ll surely hit you up next time!

Major thanks to my mom and her friend Jackie, who spent the morning volunteering at the TNT water stop and then spent the afternoon and evening celebrating with me.

Huge thanks to Nicole, Scott, Tracey and all the TNTers for all the help and advice along the way.

And kudos and thanks to Flo and Marie who ran their first marathon today!!! Like everything else, they conquered the marathon with humor and grace. Good friends make life sweeter and running bearable.

Where Has The Summer Gone?

September is Leukemia Lymphoma and Myeloma Awareness Month!

It's been quite a while since I've posted.  As you might expect, Ray and I have had a busy summer.  We got to spend quite a bit of time on our boat and also spent a couple of weeks in Ocean City.  It was great.  Now it's September and I am back in graduate school and volunteering at the Pediatric Oncology Unit at Johns Hopkins one morning a week.  My daugher, Stephanie is gearing up and has begun her training for the Baltimore Half Marathon that will take place on October 15th.  She is running in my honor.  She does this through Team-In-Training which is sponsored by the Leukemia Lymphoma Society.  It is such a worthy cause.  The disesae that I had was once inevitably fatal.  Because of events like this, the LLS funds research in 124 labs and universities all over the world.  Much of the research done there has not only made blood cancers a cureable disease, but has also made great in-roads into finding cures and treatments for other types of cancers.

My next oncology appointment is October 27th.  I am hoping that I won't have to get a bone marrow biopsy this visit, but I know that another one will be scheduled before Christmas.  As much as I hate getting them, I always feel relieved when I get the results that say, "still 100% donor."  That's the thing with cancer - once you've had it you worry that you'll get it again.  I don't think there is a day that goes by that I don't think about it.  Most time I think, "God, I am so grateful," and then other times I think, "could that ache be sometime more than just an ache."  Alas, life goes on.  Happy Fall!