I would like you all to know…. I seriously do not like drama. I’m not sure if drama now has an affinity for me or what. But seems to have found me, latched on to me and tries earnestly to follow me. I will refuse to to give in, but I feel like an allstate commercial sometimes:
365 days ago. Christmas Eve. Worked all day. Feeling not my best for several weeks. The journey started.
365 days later. The journey continues. I am in the hospital right now. I am trying to diffuse mayhem and get home. I am trying to respect the process, I and trying to be an advocate for myself. I am trying to watch the big plan. I am trying to be patient.
Multiple hospitalizations. Fever, fever, fever. Infection, cancer, autoimmune, UNKNOWN. CT biopsies, Bone marrow biopsies, bronchoscopies, missing holidays, seeing kids only via facetime, single parent for my husband, wondering if I was going to die, contemplating suicide, telling the kids I may die, calling hospice, insurance rejections and denials, denial of disability, Spleenectomy, genetic predisposition, HLH?, doctors not believing that I have HLH, chemotherapy, constipation, immobility, weakness, not being able to lift my own legs, fever, uncertainty, depression, rashes, tenacious disease that very few understand, 3 weeks in the hospital, pain, messed up schedules, poor communication, positive this, negative that, steroids…. I don’t know the list could go on and on. I will not dwell on this.
Right now…. On Tuesday I had chemo. everything has been going well for the most part. Things are going as expected. I am tired. I am trying to get my family packed to move to go to Boston. Unfortunately, weather is now coming into play and we have to crunch as opposed to leaving when we “wanted” to. Christmas is here… and I was sick last Christmas. And I’m tired of this stinking disease taking things from me. I was a bit chilled Wednesday- what do I do? Take my temperature – 99.8. GREAT. Call all the doctors… got up as high as 100.8. Go in, get checked. My WBC are low- not too exciting, expected considering the chemo. Ok can handle that. Admit me for the night. OK. I can do that. GREAT news- Chest CT looks so much better!!!! At least from an HLH stand point. I have a small acute effusion that may be a slight pneumonia (argh). Explains the cough I developed. And then there’s this little positive blood culture. The baine of my existence right now. I feel better than I have in weeks. Why, oh why did that have to be positive? And of course, it takes about 3 days to decipher what is actually growing… and now, I’ve got a nervous doctor. Sort of. They aren’t like crazy watching me. I mean they forgot to order labs and such! Seriously. I get tired of feeling like a “persistent woman.” But I also get tired of cleaning up and advocating for myself all the time. If you are giving me not the greatest news- you better be able to talk to me about it. I am no longer just a “yes man.” And never ever expect things to get done- unless you do them (there is no such thing in life as “not in your job description- it can be out of you scope, which is different- but taking vital signs, ordering things, following through on things, being a thorough person is in everyone’s job description- no one is above anyone else). I learned that a bit ago. So I sit. I wonder how “risky” I am being about going home. I wonder if I throw risk to the wind!! Crap, live it up and go eat some fresh fruit right now!!!! Let’s have sushi and lunch meat too- for good measure! Sign out AMA- or stay put. Pray. pray. pray. What will the day bring. Mayhem? Or measurement? Peace? Calmness? cooperation? Mutual goal setting? I think that is my goal- the calm stuff anyways.
I do not forget. During all this…..
Finding Christ, renewing my wedding vows, my parents moving closer, so much community support, Dr. Yoda, Boston doctors, awesome kids, awesome neighbors, awesome church, zoloft, listening to the kids laugh, enjoying every minute, friends, ice cream, baths, kitty snuggles, kiddo snuggles, growth, peace, calm, being baptized, hair (no matter how short or long lived), fresh fruit and veggies, yogurt, cracker barrel, peanut butter and ice cream, kindness, the bible, homework, Christmas cookies, feeling well enough to help and cook, watching Camden eat! pizza, new friends, normal problems (like being short staffed- lol- I find this one really funny now), warm breezes, cool breezes, sun, rain or snow, Bowling Green Montessori, doctors that are more than doctors but friends too, mutual experience (no matter how different), counseling, being busy, being still, education, more education, planning for the future, exercise, help, surprises, regularity, working appliances, finding a house, listening to God, communing with God, reading my Bible (there are a lot of answers in there), Sunday school, church, vegan cupcakes, spicy food (that I can actually taste through my chemo mouth), floss, texting, email, facebook (even facebook), 3:30 a.m. chats with another crazy friend, smelling clean kids, tea, compassion, LIFE. This list is infinity (which is one of the boys’ favorite abstract ideas).