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September is National Leukemia & Lymphoma Awareness Month

September 5, 2011

Three and a half years in and I never knew this. Or, maybe I did and I forgot. Who knows.

September and Leukemia & Lymphoma Awareness Month.

Did you know?

  • About 1,596,670 new cancer cases are expected to be diagnosed in 2011.
  • In 2011, about 571,950 Americans are expected to die of cancer, more than 1,500 people a day. Cancer is the second most com­mon cause of death in the US, exceeded only by heart disease. In the US, cancer accounts for nearly 1 of every 4 deaths.

Since my main diagnosis is chronic lymphocytic leukemia (secondary is small lymhocytic lymphoma), let’s talk a little about it.

  • An estimated 44,600 new cases of leukemia are expected in 2011.
  • An estimated 21,780 deaths are expected to occur in 2011.
  • Leukemia, a cancer of the bone marrow and blood, is classified into four groups according to cell type: acute lymphocytic (ALL), chronic lymphocytic (CLL), acute myeloid (AML), and chronic myeloid (CML).
  • Survival rates vary substantially by leukemia type, ranging from a 5­ year relative survival of 24% for patients diag­nosed with AML to 80% for those with CLL.

People always tell me they don’t know what to say or don’t know what to do, here are a few suggestions.

  • If you area not already, consider becoming a bone marrow donor. Joining the registry is not hard and you could possibly save someones life (maybe me someday:).
  • Or, turn Facebook/Twitter orange to help raise awareness. Snag the graphic below and set it as your profile picture for the month of September.

 

*I claim no credit for either of these graphics, they were both snagged from Google images.*

Lacey

Posted in cancer SUCKS | No Comments »

the unknown.

July 27, 2011

This is not a happy go-lucky post, so venture elsewhere if that is what you are looking for.

These are raw thoughts from my head about this cancer battle. I am not looking for sympathy or pity. These are just simply things that I wish I had been told, things that swirl around in my head the minute I attempt to lay my head on a pillow. I am not depressed, I am a realist. This battle is hard and a smile is not always on the agenda for the day. For me, the unknowns are the hardest part, especially since I am a self-professed control freak. God has an interesting sense of humor.

  • No one warned me that some of the people I expected to be there for me most are not and the people I never imagined would care, do.
  • No one warned me that 3 years later I still wouldn’t have “acceptance”. So much for the five stages of grief.
  • No one told me that making inappropriate jokes about cancer would be a coping mechanism. Even for me, Miss Serious.
  • Bone pain, no one told me about the bone pain. No one truly understands it either.
  • I was warned that my lymph nodes would swell. I was not warned that they would hurt like hell.
  • Fatigue, I knew about. It was actually one of the main symptoms I got diagnosed with. No one warned me that no matter how tired you were, there would be some days that your mind would not turn off and sleep would not come.
  • No one told me that I would have to suck it up and put on a happy face to make people comfortable. People are scared of cancer and truly want to just sweep it under the rug. That’s all fine and dandy when you aren’t the one living it.
  • No one warned me that I would be jealous of people with other forms of cancer, especially breast cancer. Everybody “Thinks Pink” and works to “Save the Ta-Ta’s”. I am not minimizing their battle, cancer sucks no matter how you look at it, but they have worldwide support. Leukemia does not.
  • No one told me that there would be oncologists out there that don’t have a feeling bone in their body. I was super spoiled to Dr. G and could have never imagined that in a field such as this, that there would be that coldness/disconnect.
  • No one told me how much this would affect my marriage. We are in this together, through the good and the bad, but there are areas I never imagined it affecting. My patience, my confidence, our intimacy. My husband is amazing, no matter how many times I try to push him away, he just loves me even more.
  • No one told me that 3 years, a bone marrow biopsy, a lymph node removal/biopsy, 2 CT scans, hundreds of vials of blood and more appointments than I have fingers and toes later there still wouldn’t be any answers.
  • No one told me that if it wasn’t for my husband and daughter, I would want to give up. Everyday.
  • No one told me that no matter how angry I get at God, my faith is the only thing that gives me hope that we can beat this.

 

 

Lacey

Posted in cancer SUCKS, random ramblings | 3 Comments »

this post is brought to you by the letter “c”.

April 9, 2011

This post has been in draft status for almost a month now. Sad, really. I just have no desire to talk about it or write about it, but I know that there are a lot of people out there that would like to know how I am doing, so here goes.

The last few months have been appointment after appointment and test after test since TriWest finally decided to approve an offbase oncologist for me (my on base oncologist is deployed). Most of the results haven’t changed much, but chemo has been mentioned now due to the fact that my symptoms are getting worse and that hit me. Hard. For now, I have refused that route. While my symptoms have been getting worse, I do not yet feel they are “bad” enough to subject my body (and family) to the stresses of chemo. Chemo is not smart, not only does it kill off the bad stuff, but it attacks the good stuff too. So, we just watch and wait. As of right now, I don’t go back to the doctor until September unless something changes.

February 11th brought 3 years of fighting this battle, although I have been recently told it should have been diagnosed probably about 2 years earlier. Military family practice, gotta love it. There are some days, I still don’t believe it, then the utter fatigue and bone pain hit and I am quickly knocked back into reality. I am thankful though that even as frustrating as the “waiting” is, that is it not aggressive at this point and I can still lead a fairly normal life.

In early March, I had new blood work drawn (as well as a CT scan). My WBC (white blood cell) count is up to 56 from 48 back in September. It’s still not doubling in a 6 month time frame, so that is good news. I was Zap-70 positive but CD38 negative which is a bit weird. From what my oncologist says, when you are positive for one you are usually positive for both. He says my results are actually a good thing but I will just have to take his word for that. I try to research and learn about my results, but it just makes my head spin sometimes, so I walk away. My CT scan showed several enlarged lymph nodes in my neck, armpits and groin, but none in my chest. My spleen and liver are also still at their normal sizes which is a good thing (in CLL patients, sometimes your WBC can collect in your spleen causing the need to remove it).

On March 21st, I had a lymph node biopsy to see what is going on with the enlarged lymph nodes (and to see if my leukemia had transformed into a more aggressive lymphoma). I am now the proud (?!) owner of a 2 inch long battle wound/scar. The surgery went well and for the first time in ages, I actually came out of general with no nausea. That is such a blessing, because I cannot express how much it sucks to not only be groggy and in pain, but to also feel the need to throw up (which I don’t do well anyway, I take it as a personal insult and cry every time).

The surgery was outpatient, so I got to go home after a few hours in recovery. The wound site itself is still tender, but otherwise things are great. The numbness is going away and I no longer feel like someone is ripping my head off when I turn to look at something.

On March 31st, I had the follow up with the surgeon and found out the results. They took out 2 lymph nodes and both came back as having SML (small lymhocytic lymphoma). What? That threw me for a loop and really scared me. So had my leukemia turned into a more aggressive form of lymphoma? Thankfully Bryan was with me and he has a knack for being able to keep me from totally freaking out. My next oncology appt wasn’t scheduled until April 11th, but I knew I couldn’t since there and wait almost 2 weeks to know what was going on, so we stopped by the office downstairs to see if I could reschedule for a closer date. Instead, he saw me then, about 15 minutes after I walked in the door. I’d like to see THAT happen in a military hospital.

It turns out that CLL (chronic lymphocytic leukemia) and SML are basically the same thing, only CLL presents itself mainly in the blood whereas SML presents itself mainly in the lymph nodes. So, my diagnosis hasn’t changed I still have CLL, stage 1 to be exact (it goes from 0-4). It was a relief to hear that, as much as anything can be a relief to a patient with active cancer.

So, due to my choice, we wait. Eventually I will need chemo. Supposedly the success rate for CLL patients to go into remission after chemo is pretty high. If I don’t go into remission, it comes back or I develop another form of cancer, we move on to possibly having a bone marrow transplant. Of course, this could be 6 months down the road or this could be 5 years. No one really knows. The average life expectancy for someone with CLL is 12 years, but I am an anomaly. I wasn’t supposed to even get CLL (usually you are male and over 70), so there are truly no statistics for me. On one hand that makes me hopeful that being younger will help me fight it more effectively and on the other hand it scares me to death. What can you do though?! God gave this to me for a reason, I just need to figure out why and act on it.

CLL Fact Sheet from the American Cancer Society
Save a life, become a bone marrow donor.

Lacey

Posted in cancer SUCKS, random ramblings | 8 Comments »

2009+

April 27, 2010

This is from an update email that I sent out to family and friends earlier today. I thought I would post is here too.

 

As it appears, life never slows down. Occasionally I’d like to ask God for a time out, but it just doesn’t work that way. I’ve been working on this update for a few weeks now and finally decided to just buckle down and get it finished today. Be forewarned though, it is long since I didn’t manage to get my annual Christmas letter out and am covering a large span of time.

2009 was an exciting, crazy, busy, life changing year for us and 2010 is proving to be much of the same.

We started out 2009 in Ohio, visiting Grandma and Grandpa Pease (Bryan’s grandparents) who we hadn’t seen since before we moved to the UK in 2002. That quickly rolled into a weekend visit from my Mom where Bryan and I took advantage of a weekend getaway, gall bladder removal surgery for me, car shopping, a MercyMe concert and a 3 week TDY to Savannah for Bryan. In May, we participated in our 2nd year of Relay For Life, my 1st as a steering committee member and later that month, I ran our base’s annual 4.4 mile Gate to Gate race (my finish time was not pretty, but I finished AND I ran the entire thing, quite a feat for the girl that used to forge notes to get out of PE). Soon thereafter, we hit the road for a weeklong road trip to Texas to see family. Jacey stayed behind and spent several weeks between my Mom and Bryan’s Mom’s house. During that time, Bryan and I got a huge dose of the no child lifestyle and let me tell you, the first week is great and then it gets boring fast :). 2009 also brought our 10th wedding anniversary, my 30th birthday, Jacey’s 8th birthday, another road trip to Texas for Thanksgiving to see Bryan (he was TDY again) and then Christmas with my Mom and brother here in Florida.

The biggest event of 2009 though has also spread into 2010. In September of 2009, we found out that my oncologist would be deploying in January and then separating from the Air Force once she got back. I was going to be losing my favorite doctor and one of the main reasons we had not pursued any job/location changes. With that no longer holding us back, Bryan decided to look at the retraining list. Bryan has disliked being a maintainer for a long LONG time, but did what he felt was necessary for the best stability for our family and medical care for me. When we looked at the retraining lit, imagine what was there, Bryan’s dream job, UAV (or RPA, the AF can’t make up its mind) Sensor Operator! The next few weeks were spent getting all the necessary paperwork and medical forms together to submit a package. On October 21, 2009 we submitted the package and on October 26, 2009 he was approved and had class dates. So much for the 21 duty day wait to hear something. That sent life into a crazy spin that hasn’t stopped yet. Bryan left for his first 4 week class on November 18, 2009, another 4+4 week class on January 13, 2010 and left for his final 12 week class this past Sunday (April 25, 2010). On February 12, 2010, Bryan graduated BSOC (basic sensor operator course) and is now an official RPA sensor operator. Jacey and I flew out for the week of graduation and had a great time. Let’s not discuss the flight in though; we flew in on the one day in a blue moon that DFW got numerous inches of snow. Let’s just say that Jacey and I now know DFW airport like the backs of our hands and Bryan can pass a test on less than 2 hours of sleep. Bryan also reenlisted last week for another 5 years, so the Air Force has us until 2015. I can’t figure out if that is a good thing or a bad thing!

With this new job, also comes a move. We will be heading to Creech AFB, NV (outside of Las Vegas) at the end of July once Bryan is back from this final class. There, Bryan will be working on the MQ-1 Predator. We plan to live on Nellis AFB (Creech does not offer housing) for the first year while we learn the area, where good schools are, etc and then plan to buy. Hopefully housing will stay as affordable as it is there now or get even better. While we are sad to be leaving here, we are excited about the move as well. We will have been here in Florida for 5 years by the time we move and that is an eternity in the military and to this girl with gypsy blood.

As for Jacey, Jacey is bored out of her mind in 2nd grade, but there isn’t much we can do at this point with only 7 weeks left of school. She has gotten 1 B thus far this year, with the rest being A’s. Jacey finally found an extracurricular activity that she loves and that is baton twirling. They had their end of season recital today and then she will have a twirling day camp in May. Hopefully we will find twirling on the Vegas end, since this is the first out of many activity attempts that she has loved. Otherwise, she spends her time going to H20 (her Wednesday night church group), reading, playing the Wii and having an unhealthy obsession with the old 90’s show “Full House”. I can’t complain too much, it is better than most shows they have out nowadays. She has really sprouted in height this year, but is still just as slender as ever. Built like her Daddy, she has that long, lanky figure that most would love to have. She on the other hand, thinks she is too skinny, while we tell her she is just perfect the way God made her. It sure does start early. She is ready for school to be out and summer to start. She flies to Texas to spend 2 weeks with my Mom right after school ends and then has her first weeklong overnight camp as soon as she gets back. She is thrilled about both, especially getting to fly by herself (she’s only been flying since she was 7 months old, Miss Frequent Flier :).

And me, I’m doing okay. Tired is the new normal I guess, but we as humans have this insane ability to adapt and when I can’t, I give in and take a nap :). Work still remains the largest item outside of Jacey that keeps me busy, but my last day will be July 1st in anticipation for the move. As if that wasn’t enough though, we are gearing up for Relay For Life which is this Friday, April 30th (there is still time to donate, if you feel so compelled – http://www.buchorn.com/blog/2010/03/20/relay-for-life-2010/). Being event co-chair this year has been an interesting ride, we have a fabulous steering committee and the event chair is my partner in crime, but I am ready for it to be over so I can shift my attention more towards the move prep and have one less thing on my plate. I had my last “official” oncology appointment here at Eglin back in March and she gave me the all clear to wait until we get settled in Vegas to go back. My white blood cell count is now 29, higher than it was when I was diagnosed (it dropped quite a bit from diagnosis levels after I lost weight) but, Dr. G is not worried because it is not jumping at alarming levels and I am doing okay otherwise. I still battle the night sweats and chills but those will be here at different intensities for probably the rest of my life. Dr. G knows the oncologist that I will be seeing on base in Nellis and has already contacted him to pass on information. I am really going to miss Dr. G, but if she trusts the new doctor, I will too. Anyway, I need to get this wrapped up, so enough about me.

Some of you may have noticed, but we have changed out email addresses and website url. The old digital-drama.com accounts will not be valid much longer, so please update your address books (please leave a comment if you want our new email addresses and don’t already have them…leaving them off of the blog for spam reasons). These addresses will travel with us to Vegas and beyond. Bryan and I are also on facebook if you haven’t already friended us and want to.

  • Website with blog and photo/video album links – http://www.buchorn.com (the photos and videos are also completely up to date now if you would like to take a peek)

So, with that I will close this already way too long update. Hopefully I won’t wait another year+ to get one out.

Lacey

Posted in AFYFE life, bragging on the {military} brat, cancer SUCKS, I *heart* a guy in uniform, in rewind, random ramblings, Relay for Life | No Comments »

Relay For Life 2010

March 20, 2010

*This is going to stay up at the top of my blog until after Relay, please scroll down for new posts.*

Many, if not all of you know that I was diagnosed with CLL, chronic lymphocytic leukemia at age 28 in February 2008. Many of you also know my dedication to cancer research and Relay for Life. If all this is news to you, you can read my story here.

While I am currently doing wonderfully with my cancer, numbers are remaining fairly stable and I am not in any immediate need of treatments, it is not the time to slack off of cancer research support. This year, I am once again the Niceville/Valparaiso Relay for Life Steering Committee (this year as event vice chair) and it has been an awe-inspiring experience to say the least. Relay this year is being held at the Niceville HS track and starts on April 30 at 6pm. 18 hours of fun and triumphant dedication to one cause, eradicating cancer. 18 hours of survivors, caregivers and supporters, trying to change the face of cancer, one lap at a time.

While Bryan will unfortunately not be able to participate this year, I would love if you could come out and join Jacey and I in walking or would be willing to make a monetary donation, every dollar helps to find a cure to this horrendous disease. There are online and offline donation opportunities on my ACS Relay page.

 

My 2010 Relay For Life Page

 

There is also a spot to donate on my facebook page if you would prefer to go that route.

Lacey

Posted in cancer SUCKS, Relay for Life | No Comments »

2 years.

February 11, 2010

By the time you read this, hopefully I’ll be in the air on my way to Texas to see Bryan. Of course, this is barring any major snowfall that is currently expected in Dallas (major for Texas anyway). One flight of mine has already been canceled, so we had to change flights. We shall see.

Today is the 2 year anniversary of my CLL (chronic lymphocytic leukemia) diagnosis. Still not sure some days how I feel about it and other days it doesn’t even cross my mind. Bryan asked me the other day, what you get someone on this type of anniversary and I figure nothing. It is not a landmark event in my book, although I suppose it should be. I have lived 2 years with a terminal illness and my current prognosis is good.

So, can I take back that reply of nothing?!

I would like a full body massage while laying on a beach in Hawaii, sipping some fruity drink. Sound good? Worthy of this anniversary?

I think so :).

Lacey

Posted in cancer SUCKS | 2 Comments »

i’m alive…

December 17, 2009

I think…LOL!

  • Work is nuts, you can definitely tell it is our busy season. My boss today informed me that sleep is overrated. I don’t agree :). 3 more work days till the Christmas Eve rush is over and 5 more work days till vacation!
  • Monday, I had my routine appointment with my oncologist. My white blood cell counts are up to 24 from 18 at my last appointment, 3 months ago. Sigh. She’s not worried, because in her eyes that is a small jump but it still bugs me. I am back up to where I was when I was diagnosed almost 2 years ago. Wow, has it really been that long?! It’s still just watch and see because I feel “okay”. I have gotten sick twice already this season (a minor cold and pink eye) after not getting sick at all last season. She wants me to keep an eye on it and if I keep getting sick, she will check my immunoglobulin levels. If they are low, we can always do IV immunoglobulins but she has only seen about a 50% success rate in her patients. Her goal though is to do anything possible to prolong the amount of time until I have to go on chemo and I agree with that approach. She did contact the hospital at Nellis AFB and I can be seen on base, so now it is up to the chief and AF to send us there instead of Holloman AFB.
  • Tuesday I had my band appointment. We won’t even discuss my weight, let’s just say I have gained a few pounds (if you really want to know, up on the top under about me is my band page). I’ve been really battling head hunger and mindless eating lately. Not sure why, boredom I suppose, but it needs to take a hike. He gave me a 0.5cc fill bringing me to 4.5cc total in my 10cc band. He thinks one more feel and I will be at my sweet spot (something about the pressure that comes back on the plunger when he fills). I actually get a real dinner again tomorrow night and I can’t wait to see where my restriction is although I am thinking it is going to be pretty good. Last night I ran a little over 4 miles and proceeded to gulp my water like I usually do. Bad idea, I could feel it not going down. Thankfully none came up, it eventually trickled through, because that would have been embarrassing (totally full cardio room with lots of cute guys in uniform, including mine but it wouldn’t have phased him).
  • The weather here sucks. It has done nothing but rain the last few weeks. Jacey even asked me the other day if we really lived in the “sunshine state”.
  • This weekend, I am doing all my Christmas baking/goody making. I do plan to have a piece of each (just being honest here) but the rest of those calories are going on some one else’s hips *insert evil laugh*!
Lacey

Posted in AFYFE life, bragging on the {military} brat, cancer SUCKS, no more SAHMommy, random ramblings | 2 Comments »

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