Today is not one of Christie’s good days
February 15th, 2009 Posted 4:42 PM
Christie’s having a lot of pain today. And she’s hungry but doesn’t want to eat. She’s really wishing she had some marijuana, because that REALLY helps with the pain, nausea, and appetite problems. I don’t understand how anyone can say that pot has absolutely no medicinal value whatsoever. I’ve seen first-hand how much it helps, and how Christie’s condition deteriorates when we can’t afford any weed. How I wish we lived in California, where medicinal marijuana is legal and even available from vending machines, and where we could get financial aid to help get Christie what she needs to ease the suffering she endures daily!
We took Christie to the oncologist last week for her monthly visit. While we were there, Christie brought up the fact that she recently developed a swollen lymph node in her groin, and a hard, pea-sized lump by her ribs on the right side. Dr. Neerukonda took a look and said there are actually TWO swollen lymph nodes in Christie’s groin, each about 1 centimetre in diameter. She said not to worry until she says to worry, but admits that she is “troubled.” She wants to run a PET scan now rather than wait until Christie is done with the first six chemo treatments and agreed that yes, this is unusual but she wants to see what’s going on with the tumors.
Of course we’re worried. And Christie is terrified. Her new swollen lymph nodes have begun to hurt a lot and are keeping her from being able to walk or even sit comfortably. To make matters worse, she found another pea-sized lump - this one on her left temple. She had an MRI about 5 weeks ago and I told her that I thought if there was a tumor devel0ping in her head, they would have seen it at that time. However, I’m scared, too.
She’s so tired of hurting. As she puts it, she is ”sick and tired of being sick and tired.” She’s having a rough day today- between the pain and the fear, and the shit-load of meds she’s on, she’s cranky and upset. She usually has a wonderful attitude - she’s so very brave, and so very strong… but even the strongest person has days where she feels weak, afraid and alone. This is one of those days for my baby girl.
After she found the lump on her head, I sat and held her while she cried. It never fails to amaze me how little she is now, how like holding a small child it is to hold her. I know she’s 19, but she seems so tiny these days. She has lost 40 pounds and an inch and a half of height since this nightmare began. Even the size 7 jeans she started wearing a couple of months ago are starting to be loose on her.
God, as if this whole thing wasn’t bad enough, the paperwork involved is insane. Paperwork that goes to the Social Security Administration to appeal their decision to deny her SSI. Paperwork to file with the Leukemia and Lymphoma Society to get help with her hospital co-pays. Paperwork for the utility companies. Paperwork to apply for financial assistance. Appointment confirmations and lab slips. Bills, bills, and more bills - over $90k in medical expenses thus far… and this is nowhere near done.
The oncologist has intimated that the first 6 rounds of chemo will likely not be enough. And when I asked about Christie’s prognosis, there was no real definitive answer available. The impression we got from Dr. Neerukonda was that things are changing fast in the field of cancer and while three years ago they might have given us one answer, that answer would be different now. There is more hope now, more options for treatment, but she cannot give us a certain answer one way or another because she simply doesn’t know.
But we know. Christie knows. She WILL make it. She WILL beat this horrible cancer demon. The day WILL come when she is declared NED - No Evidence of Disease, the most joyous declaration a cancer patient will ever hear. Getting from here to there will be a battle, have no doubt, and our struggles are far from over, but that day of unparallelled celebration will happen. We’ll be sure to let you now when it does so that you can celebrate with us.
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