Posts Tagged ‘cancer’
2 weeks in the hospital now, and we want to go home. Christie says she misses Ryan (her younger brother), she misses the kitties and dogs, and she wants to go home. We want to go home, too. This hospital is 65 miles away from home so it isn’t even possible to go back and forth from home to here and back again. The truck is illegal as can be, without current inspection or insurance (mandatory here in Texas), and in Dallas, if you don’t have insurance on your vehicle and get stopped, the cops impound your vehicle. (Great… when you don’t have any money for insurance, how are you supposed to be able to get your car out of impound??!?)
Not only that, but the truck is a 1987 Ford F-150 and uses WAY too much gas. A trip back and forth costs $20 in gas alone, and we just don’t have the resources to afford it.
Things are getting better in some ways, worse in others. Our landlord (who, as you may remember, is my husband’s father) is demanding $500 by the end of the month. Our rent is supposed to be $300; what we’re doing is making the house payments for him because he can’t afford to keep up the mortgage any longer. We just paid him $500 on the 1st of this month, delaying getting Christie to the hospital and endangering her life because he HAD to have the money that day or, he said, the house would go into foreclosure. He is threatening our home… and, like the ass he always is, is doing so at the worst possible time.
Ryan called yesterday and said there was a letter from the electric company that came in last week but he was thinking that it might be important. So I asked him to open it, and it was a termination notice for $78, which has to be received by next Monday, the 20th. I’ve tried to call the electric company but can’t get through for some reason. I’ll continue to try and tomorrow will try to get in touch with Cancer Care Services in Ft. Worth to see if they can help. It’s a small bill… maybe they can.
And I can’t seem to get verification of whether our tax return was accepted. I e-filed via the IRS website but never got a confirmation e-mail, and have gotten conflicting messages from their site. I’ve tried to call and every time I have to sit on hold forever, waiting for an agent, something happens and I have to hang up. Tonight, finally, I have a few minutes to call… but their phone system is overloaded - of course, it’s 4/15! - and they are asking people to call back on or after 4/16. UGH!
To make matters even more frustrating, Christie started running a fever last night. Dr. V says it’s a neutropenic fever, but we can’t take her back outside because, her nurse today said, “She got that fever AFTER you took her outside yesterday and we don’t want her back outside because of that.” WTF?!??? I don’t think the outdoors gave her a fever. Christie is pretty upset over that because she loves being outside and REALLY wants to go. The longer they keep her in this room, the more depressed she gets.
She did start eating again - HURRAH! - but now she needs to drink more. They started her on IV fluids last night because she’s dehydrated. Always something different, always some fly in the ointment. *sigh* She wants to go home so much… being holed up in here only makes things worse for her in so many ways. It doesn’t help that she’s frustrated and upset, and being a tad difficult because of that. It’s a vicious cycle but I don’t know how to break it. 
C.R. and I have doctor appointments on the 17th. We need to get our Border Collie, Amie, out of the Humane Society’s shelter/hospital. (She was hit by a car on the 31st of March and had a leg amputated.) We need to get home and see Ryan and our other pets. This is insane, being so far from home, and it’s costing an arm and a leg, considering that C.R. and I have to eat, too.
So frustrating… Not Christie’s fault by any means, but frustrating nonetheless. I’m thankful that she’s here, and that they saved her life… more than I can ever say! But still, it’s hard. Like the floor I sometimes sleep on here. *wry chuckle* Let’s just say these rooms don’t have the best accomodations for family. There’s a window seat that can be used as a short, rather hard and uncomfy bed. C.R. gets that 9 times out of 10 because he has serious back problems. There are two rigid, high-backed chairs that I sometimes put together, seat to seat, and sprawl across to sleep. And there’s the floor. OUCH!
Oh, how we want to go home…
NOTE: This was written last night, 4-13-09, at about 11:00 pm.
Again, I apologize for being out of touch. This cancer thing is awfully unpredictable sometimes, as anyone who has dealt with “The Beast” knows. Every time we’ve thought we had things understood and under control, something else happens to throw a humongous monkey wrench into the mix.
Christie started having severe headaches, along with a stiff and sore neck, a couple of months or so back. The oncologist at the county hospital where she was being treated ordered a CT scan and lumbar puncture to rule out CNS involvement. All tests came back clean but Christie’s headaches continued. On March 29, Christie started having uncontrollable tremors and shudders that wracked her entire body, as well as some incoherence and confusion. We took her to the local hospital down the road rather than the county hospital because A) we felt time was of the essence, and B) having very recently been approved for SSI, she now has Medicaid. She was diagnosed with a severe potassium deficiency, given IV potassium and a scrip for potassium pills, and sent home. She became extremely fatigued and lethargic, and complained of feeling, in general, extremely sick. She spent a lot of time crying, which she said was because she felt so ill and hurt so badly.
On March 31, Christie had an appointment with the oncologist, who reminded us that the lumbar puncture and CT scan were clean and surmised that the headaches were from meds. She also felt that the ESHAP contributed to Christie feeling so poorly, which seemed plausible. Doc Neerukonda then sent her home with a fresh hydrocodone scrip for the pain.
On April 1, Christie became incoherent, confused and unable to walk. She was definitely suffering “altered mental status,” even going so far as to attempt to climb out the window of the truck on the way to the ER. The ER doc diagnosed meningitis and admitted Christie, then started her on broad spectrum antibiotics until such time as they could determine whether it was viral or bacterial.
The next morning, her old oncologist, Dr. Diggikar, came in and informed us that it was not meningitis but involvement of the central nervous system. That evening, Christie, who was by that time almost comatose, was moved by ambulance to the University of Texas - Southwestern Medical Center’s Zale-Lipshy Hospital in Dallas, one of the top two cancer hospitals in the state, the other being M.D. Anderson in Houston. The social worker at the county hospital had already worked to get Christie into this hospital because it’s the only one in the area that does transplants; this time, Dr. Diggikar used his influence to get Christie in immediately. Beds here are hard to come by, and patients are accepted by referral and review only.
When she got here, 80% of her cerebrospinal fluid was comprised of malignant cells. Plus, Christie had several small strokes, impacting at least her facial recognition and cognitive thinking sectors. She is now remembering how to speak and convey her thoughts lucidly, and her bladder is being retrained. She has no conscious function over her elimination processes right now, and that is devastating to her. She has to wear adult diapers for now, and is so very ashamed and embarrassed to have “accidents” that require cleaning up after.
She is also suffering from severe depression, for which Lexapro was prescribed 4 days ago. She is barely eating or drinking and flat refused to do either for about a week. Prior to being brought here, she had barely eaten in 2 weeks… which we thought was an effect of the ESHAP regimen. She had already lost about 50 pounds but in the 3 weeks has lost another 10.
Christie had an Ommaya resevoir implanted a week ago; through this she will receive weekly doses of methotrexate for maintenance, then one last dose of Hyper CVAD chemo. You see, today she has 0% malignant cells in her cerebrospinal fluid and, it appears, no sign of lymphoma remaining in her body! These doctors are wondrous miracle workers… they saved my baby girl’s life!
After the last dose of Hyper CVAD, we’ll start planning for her SCT. Christie’s younger brother, Ryan, came in last Friday to be tested to see if he’s a donor match for an allo SCT. If he isn’t, then the doctor says we’ll do auto - the lymphoma never invaded Christie’s bones, she is young and has been otherwise healthy, as well as EXTREMELY responsive to chemotherapy. Plus, the risk of graft v host is too big, especially considering that she’s only 19 and theoretically has a long life ahead of her. Having Christie on anti-rejection meds for the rest of her life isn’t something the oncologist wants to take a chance with.
She’s not in the best shape right now but my husband and I both feel that she’s past the worst of things now. We came so close to losing her… I cannot imagine my life without my little girl. I know her odds of making it, long-term, are about 50% but odds are numbers and Christie has always seemed to defy those! Everyone is positive and hopeful and, as usually happens, loves Christie.
We know she’s going to make it… why shouldn’t she be one of the 50% who do?
I’m on a loaner laptop at the hospital now and am about to fall asleep at the keys. I’m overwhelmed and exhausted, near to being as broken as I’ve been in a very long time. So much has happened… but I am about to drop so will try to get back to you all tomorrow.
