medical mystery…part deux

So, I went in today for the results of my recent flow cytometry test.

At 28 years old, I have cancer.

I have a form of cancer that that normally only affects people 70+ years old. One chart I looked at, didn’t even have a measurable amount of cases, per 100,000 people till the 35-39 age range. *Sigh*

I have CLL, Chronic Lymphocytic Leukemia. I’m still not sure how I feel about it, I’m almost numb. I did link to the American Cancer Society page on CLL if you care to read about it…I’m not up to typing it all out right now.

Next step is a bone marrow biopsy on March 6th so we can get an idea of how advanced it is and start my baseline. For the time being, I will just be monitored with frequent bloodwork and visits. The norm is not to treat CLL unless it starts causing problems, because it is incurable and often times, the side effects of the treatments are worse than the symptoms of the cancer alone. Of course, being the rare case that I am, who knows. Treatment options do include chemo and bone marrow transplants among other things. Dr. G (my hematologist/oncologist) does believe that this is the key to why I am always so utterly tired. She wants me to continue life as normal, there is nothing really that she advises against (other than being around sick people, since I will likely have a higher risk of infection) but she does want me to not be ashamed to take naps and rest when necessary.

For the time being, we stay here. We are lucky to have one of the thirteen oncologists in the Air Force here at Eglin. Bryan talked to his command today, to let them know about the situation and to see about getting his file Q coded so we can only go places that will have the care necessary for me. Ultimately, if/when the times comes though and I need more advanced treatment than what they can offer here, we would probably be sent to Wilford Hall/Brooks Army Medical Center in San Antonio since they have one of the most advanced facilities in the military.

As of now though, I only know the basics and won’t know anything else until after my biopsy and the results come back. I know that many of you will be concerned, but please don’t call right now. I am simply not ready to talk about it. We also don’t plan to tell Jacey until we have more info, so please watch what you say around her, she’s one smart little girl and picks up on things you have no idea she would.

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Previous post from 01.17.2008

So apparently I am a medical mystery. This whole ordeal goes back about a month and who knows how much longer it will continue. There will be some possibly TMI stuff so beware.

  • December 14th – A trip to the doctor because my PCOS has been going haywire and I am REALLY tired of having 2-3 cycles a month. They did labs and my white blood cell count was 25,000. Normal is between 4,000-9,000. Most common cause of elevated white blood cell counts is an infection.
  • December 19th – Follow up visit with my PCM and more blood work. Turns out I have a UTI (even though I had NO symptoms at all) and they think that is the cause. I don’t remember what my white blood cell count was but I started antibiotics.
  • December 28th – Follow up visit after my round of antibiotics. UTI is gone but my white blood cell count is still 22,000. My PCM is lost as to why, so she orders a chest xray to check on lymph nodes and refers me to the hematologist.
  • January 14th – Labs and then an appointment with the hematologist. My white blood cell count is now at 24,000 and there are asymmetrical white blood cells in the smear she looked at but they are normal (huh?). She did bring up the “c” word but says I don’t fit the most common stereotypes; I’m not older, I’m not a smoker, I don’t feel sick, etc. My choices are a flow cytometry test or just cut to the chase and do a bone marrow biopsy/aspiration. I opted to do the flow cytometry test first, since it is just a regular blood draw on my end. I will probably still have to have the bone marrow biopsy but right now, I just could not mentally fathom it. My aunt died from Hodgkin’s Disease after a bone marrow transplant and while I know it is not the same, it still bothers me.
  • January 17th – Had my flow cytometry test done up at the base after and whole fiasco of them trying to tell me they don’t do it. I sure hope they got it shipped off to Wilford Hall like required. Results will take 1-2 weeks, so here I sit…waiting.
16 replies on “ medical mystery…part deux ”
  1. Hi Lacey,

    My name is Debbie Light and I have CLL.I found out in 2004 and am doing fine.You are not alone in this.We have a website for Christians with CLL and you can get lots of emotional and prayer support there.I’m praying for you regardless if you join or not.It is free and we have world reknown Dr. Terry Hamblin,from the UK who has written 6 books on CLL to answer our medical questions.

    Hope to see you there.

    God Bless,
    Deb
    http://www.cllcfriends.com

  2. Hi Lacey,
    I have CLL also, been “watching and waiting” since 2001, when I was 46 (and thought that I was too young for this as well!) Some people can live a full life time with no treatment. There are also many alternative treatments out there that don’t wear down your body like conventional treatments do. And with CLL you have the luxury of trying things and waiting a few months to see if they work. You are NOT a time bomb. You can go slowly with your decisions and what you do. This is generally not an aggressive disease. Once I realized that I was able to calm down, change my diet, see some alternative specialists and I seem to be doing very well. Please feel free to e-mail me, and I’ll send you my phone number if you’d like to talk.
    There are many more of us out here. Check out the leukemia/lymphoma society’s chat room. It can be very helpful.
    -DR

  3. I found your blog this afternoon when searching the web for more info on CLL – my husband was diagnosed with CLL last May (he’s 47.) I know a little bit about what you’re going through now, and I really feel for you. It will get better. There’s actually quite a bit of good information on the web about CLL. The best for technical info is “CLL Topics” http://clltopics.org – click on the “Newly diagnosed” section. There are some amazing new therapies just being developed for this disease and not too many doctors know about them – make sure you get to see a hematology ocologist, and if possible try to get to a CLL specialty center like MD Anderson in Texas. There’s no reason to think that you won’t live for a very long time, so don’t let those out-dated scenarios get you down. Also, the chemotherapy for this disease is nothing like the kind of chemo you may have heard about for other cancers – it’s really not too big a deal – my husband was able to keep working while getting his treatments. Fatigue is the biggest problem, which you are already experiencing. Feel free to email me if you have any questions I might be able to help you with.

  4. Lacey,

    I am so sorry sweetie. I can not even begin to imagine how you and Bryan are feeling right now. If you ever need anything, please do not hesitate to call or email and ask. Just know we love you all and miss you all dearly. Since we can’t see you this trip, I hope we can see you during the next one. Hugs.

    ~Kami

  5. My Dad was diagnosed with CLL a few years back. He is doing just fine only he has to be careful with getting ill. If he gets a cold he has to take antibiotics and he is watched closely by his Dr.

    I am so sorry that you are going through this Lacer, I pray for your complete healing!

    Love
    Carla

  6. I am so sorry to hear this, Lacey. I can’t even imagine what you must be feeling. I wish you the very very best in all of this and am lifting you up in prayer. HUGS!

  7. Lacey,

    Wow. I am praying for you. For the doctors hands, voices, discernment to be skilled through God. I am praying for your sanity and for your zest of life. I am praying that you pull together and bind yourselves as a family {your entire family}. I am praying for Jacey to understand as much as God wants her to understand. But more than anything I am praying that you climb into Jesus’ lap because his grace is sufficient enough.

    I am so sorry Lacey.

  8. You, Brayan and Jacey are in our thoughts and prayers, sister. We love you and know that you will get through this. Our God is amazing, and can work this for good. Keep your faith, and know that If I can manage it I’ll be there ASAP if you need me. :-)
    (((HUGS)))
    Paula

  9. Lacey, I’m so sorry to see this. I have been wondering – and imagine my surprise when I come over to your blog and see this. Hang in there….you’ve gotten some great comments from others going through this. I hope you can find comfort and here’s hoping to a lifetime of no complications from this disease. ((((hugs)))) I’ll be thinking of you.

  10. Dear Lacey,

    Although I have only known you through the military spouses group, I have grown close to you. You are a very brave, special and wonderful young lady!

    You, Brian and Jacey are in my prayers and I know that you are going to be fine. Everything is going to be ok in God’s Almighty name! God is in control and He knows that you love Him. He is taking care of all your needs, in the name of Jesus!
    Please remember that I live here, in Navarre, and if you ever need anything all you have to do is reach out and let me know. I am here for you and yours, Lacey!

    Please receive a hug from my family and myself! You are in our prayers!
    Love,
    Esther

Thoughts?