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.
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.