Archive for the ‘CLL’ Category

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

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

Tuesday Tidbits

November 17, 2009
  • Today was a not so great day. Started off great, but let’s just say boiled eggs are no longer my friend. Headed to work, my boiled egg breakfast in hand. Started working and eating my egg which resulted in me not paying attention to my bite sizes or how well I was chewing. Stuck, big time. Severe pain was practically immediate and none of my normal methods for relieving the pain worked. Finally after trying to battle the pain and work for an hour, I gave up and came home. Experienced my second vomiting episode since being banded 15 months ago, this time, foam and all. Yuck. Managed to doze on the floor for about 30 minutes when the pain subsided a bit and then was rudely woken up by the severe pain returning. The pain finally subsided enough (mind you it was still pretty rough) for us to head up to the hospital for immunizations where I paced the floors until we got called back. Thankfully, 4.5 hours after the pain started, the food finally made its way through right before I had to get my shot. Maybe this was God’s way of giving me a wake up call, I dunno. I keep saying I need to get back on track and keep putting it off. I have no choice but to do liquids for a few days now, due to the irritation so I am going to do the 5 day pouch test while I am at it. Get this carb monster killed and get these last stinking 18 pounds off.
  • Today, Jacey and I both got our H1N1 vaccines and Jacey got her 2nd seasonal flu shot in her series. Now she just has to go back in 30 days for the 2nd H1N1 and she’ll be done for a year. I really had mixed feelings about the whole H1N1 vaccine. My oncologist recommended it but Bryan and I still weren’t 100% sure. We finally decided that for us the risk was greater to get the actual swine flu than to get the vaccine. Bryan leaves tomorrow, so if J or I got sick, we would be SOL and me being immunocompromised, who knows how it would affect me. Bryan is not eligible right now, but at least J and I will be protected. Bryan never gets anything (illness) anyway, he just always bring it home to me. Lucky me.
  • My hard drive comes in tomorrow and this one is still chugging along…YAY! If I disappear for a few days though, you know why.
  • We had our Relay For Life Team Captain Party last night and it went really well. Bryan resigned his online chair position (because of retraining) but it was picked up by another sub-committee member, so we still have a full committee roster. We don’t have another meeting until January and while I love relay, I am looking forward to the break. I just really have a lot on my plate right now and it is one less thing to stress about.
  • And, like I mentioned earlier, Bryan leaves TDY for his first class tomorrow. I hate watching him pack, even though this first TDY will be cake. He’ll be gone a week, we’ll see him for 4 days at Thanksgiving and then he will be home a week and a half later. Now the TDY in January, will suck. He’ll be gone 2 months since the 2 classes are back to back. Oh well, right?! I made it through 2 months last year and at least he is not deployed. I am thankful for that every day!
Lacey

diagnosis: cancer

October 5, 2009

I’ve been sitting on this post for a week now, I HATE writing these updates.

Last week I had my routine oncology appointment and yes, the diagnosis is still cancer, chronic lymphocytic leukemia to be exact. It probably sounds a little bit like denial, but I always go in hoping that they will say, “OMG, I am so sorry, it isn’t cancer, it is….??”. I know that isn’t going to happen, I trust my current team of doctors immensely, but there is still that irrational hope. I mean, I defied all the odds getting it, isn’t there that 1% chance they are wrong?

Sigh.

My white blood cell counts are staying pretty stable, up to 18 from 15 when I had my last check up 6 months ago. Normal is 4-10, I was diagnosed with counts at 26 and my weight loss has helped my numbers come down in the last year. White blood cells accumulate in fat, so if you are heavier you are typically going to have higher WBC counts in general (only normal ones, not defunct ones like me :). I had been really worried about my counts, because they were at 22 when I was in the ER this summer from my lovely allergy shot allergic reaction. My doctor told me to never pay any attention to my counts when I am sick or have any other trauma because basically they will shoot up solely in reaction to that and not be a good guide. I am not anemic though and my platelets are fine, so that is good news as well. She is concerned that my symptoms are getting worse (fatigue and night sweats, I swear I am going through menopause at 29) but still does not feel ready to “treat” me because the side effects are much worse. She always asks my input though, because she says she is not me and I am a very unique case so they don’t truly have all the answers for me (average age of a CLL patient is 70 and male, there aren’t even enough of “me” out there to have any sort of statistics). I opted to still just wait and see because I am able to function normally most of the time but I go back again in 3 months now instead of 6.She prescribed me Lunesta (which I haven’t taken yet) in hopes of allowing me to sleep through the drenching night sweats. We can’t stop them, but hopefully I can at least get some rest. Otherwise, I am caught in a vicious cycle…extreme fatigue, broken sleep, extreme fatigue, broken sleep.

I did get one piece of bad news, this was my last appointment with her personally. She deploys in January and then is separating from the Air Force when she gets back. I have been truly blessed to have her as my oncologist and I am not sure anyone will ever fill her shoes. While I still don’t understand why God placed this specific battle in my life, he definitely knew what he was doing giving it to me here. Not only is she is wonderful oncologist, but she is a hematology oncologist which is the specialty I need and considering oncologists in the Air Force in general are few and far between, it is nothing short of a miracle.

This news did bring peace of mind about though in a different way. Bryan’s job here is horrible and the way it is affecting our family is worse than I could have ever imagined. We survived the UK, why in the heck would Florida break us?! And, while I absolutely love my job, as tired as I am there are many days that I wish I didn’t *have* to go to work. We had been tossing back and forth the idea of retraining but hated the thought of leaving my medical team, first and foremost, Dr. G. We had been praying about it but didn’t feel like we were getting a strong response one way or the other. After hearing her news, it was almost like God saying, “it’s okay”. So, a few days ago I looked at the budget and although it would take some getting used to, we could live without my salary. Then, last night we sat down and looked at all the job with E-5 slots open and narrowed it down to 5. Bryan submitted the eligibility request this morning and now we wait on a response. They have up to 20 duty days to let him know if he is qualified/eligible for any/all the jobs and then we go from there. Nothing is set in stone, but the process has officially been nudged. If possible, we’d like to arrange it so J and I stay here at least until the beginning of June. I don’t want to make her change schools if we don’t have to and I am heavily involved in Relay this year. That though, is up to the AF powers that be after we see our options and make our wishes known.

In a way, it is scary to think of leaving here and the roots we have set down. This is the longest I have ever lived somewhere since I was 11. I have a great job, we have an awesome church and large support system. On the other hand though, I am getting the immense itch to move and go somewhere that people don’t know my “story”. Somewhere I feel like I “fit in”.

We shall see what the future holds.

Lacey

Thirteen random thoughts on my mind in the present.

1. So, Thursday’s. I have had to alter my workouts, sine Jacey is now taking baton twirling on Thursday’s. I used to go up to the base gym as soon as I got off work, but now I am going to run either outside or in the CLC gym while she is in class. Killing two birds with one stone…eh :). I just did a short run yesterday, trying to eyeball a route. Time wise, I should be able to double it and still not be late picking her up…3 miles won’t be too shabby.

2. My body is so not my friend right now. We bought Wii Active last weekend for me to use on the days I can’t make it to the gym and it is kicking my butt! I am currently doing the 30 day workout plan on moderate (there is 3 levels). Why is it that I can run for 45 minutes with no pain, but do 3 Wii Active workouts with a resistance band and my own body resistance and am dying?! Go figure.

3. Is the rain ever going to stop? Just a little over it here.

4. My truck is all nice and clean on the inside now. The rain really makes a mess of my black on black interior and a friend is riding with me tomorrow. Couldn’t let her see the mess, I’d be embarrassed. Guess I ended up with an hour long workout today anyway, even after deciding it would be a rest day :).

5. You know, my band is fickle. Oscar (the grouch) is definitely an appropriate name for it. I can eat almost anything, steak, chicken, etc except bread, rice and pasta. And bananas…go figure. I am not a huge fan of bananas but like one occasionally and get stuck every darn time.

6. A few days ago, I booked our camping weekend. Yes, you heard me right and no, I am not loosing my mind…I think. Anyone that truly knows me, is probably pretty doubtful at this point though :). We are going to Florida Caverns State Park from October 23rd-25th and staying in a tent. Bryan and Jacey have begged me for years and I finally gave in. I’ve been there before as a child, my uncle even got married there. Anyone local have any camping equipment we can borrow before I hit up Outdoor Rec?

7. For Thanksgiving this year, I think we are going to go work in the Waterfront Mission’s soup kitchen. I worked in one when I was around Jacey’s age and it is an experience that I have never forgotten. I think it will be a really good life lesson for Jacey, that even though they may not “have” the material things we do, they are people and important just the same. We drive through a few sections of trailers that are not very well kept up every day and she has been really noticing the “differences” here lately. I really want to do anything possible to keep her from being judgmental based on financial status.

8. Then, on Black Friday we are going to head to Tampa for the weekend while all the crazies are out shopping. We’ll hit up Busch Gardens one day and no clue what yet the next. Maybe the zoo or the aquarium?! I’d love to do a hot air balloon ride but they are CRAZY expensive for the 3 of us.

9. And Christmas. This year we are staying home. I am sure family won’t be too thrilled, but I’d just like a peaceful season instead of the rush, rush that happens when you travel. Yes, I am being selfish this year.

10. Bryan’s work is going to drive me to drinking…sigh. They are so short on people and those they do have are misfits. From week to week, his schedule is changing from days to swings which makes planning anything, including my necessary doctor’s appointments totally impossible. Is it time to retire yet?

11. Anyone out there have any opinions on the whole H1N1 vaccine? I am really not too keen on getting it, I feel it has been rushed but don’t really think I will have much of a choice for myself or Jacey. Bryan being military HAS to get it and with me being immunocompromised, I am scheduled in the first group. I know I can say no, but it scares me regardless. If I did not have cancer, I would definitely say no for both Jacey and I but….I mean, I never even got a regular flu shot till last year, my first flu season with cancer. Thankfully, neither J nor I have ever had the flu (last year was her first shot too).

12. Tomorrow is our Relay For Life Early Bird Bash (training) out in Navarre. Laura (the event chair…my “boss”:) is riding with me and I am sure we will have lots of fun. We are so much alike, it is scary at times.

13. Did you know they make drumsticks with no nuts? In mint, vanilla and vanilla fudge at that…SCORE! I am going to go have one right now…

Lacey