Christie’s World, or Life Is Not for the Faint of Heart

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Going home tomorrow - great and not-so-great

Christie’s counts are up and she’s doing remarkably great, so we’ll be able to take her home tomorrow! YAY!

I’m tired yet riddled with anxiety because in the midst of getting good news that Christie’s going to be able to go home, C.R.’s “father” called and wanted t0 know exactly what time we would be home. He has called twice today to find out if we know, but there’s no obvious reason that he would need to know. We know the man and suspect he has something heinous up his sleeve. Perhaps the delivery of an ultimatum or an eviction notice… perhaps to demand even more of the one thing he worships and cares about more than anything in the world - M O N E Y. If he and his nasty wife would just back off, life would be better and we wouldn’t be constantly worried about losing a place to live.

Sure, it’s true we owe them a lot of back rent. We lost a successful small business and had matters complicated by Christie’s diagnosis. They have threatened several times to evict us and even served us with formal notice twice. So many people have expressed disgust that “family” would do this, but C.R.’s father and his wife aren’t exactly family to us.

They think we’re scum, they have called us names, they hurl accusations that we’re partying and living in high style in their crappy, ghetto house with windows that they painted shut… with a front door that has a huge hole in it that we had to cover with duct tape… with a plumbing leak that is ruining the house and they won’t have repaired because we owe them back rent.

We have next to nothing, not even a TV that really works right, not even a microwave oven, not even decent furniture. Christie’s mattress has a spring popping through the fabric, mine and C.R.’s is literally falling apart. We can’t even afford clothing or shoes. Oh, yeah, we’re living the high life alright. While we struggle to cover the most basic of expenses and feed our family, we’re living the high life. While we battle with pain every single day of our lives because we have no medical care, we’re living the high life. While we live without hot water because C.R.’s father is too cheap and too petty to replace the hot water heater that broke in August of 2008, we’re living the high life.

And yes, dammit, it IS all true. If one more person e-mails me and accuses me of making things up, of being “horrible,” of fabricating this entire, heart-wrenching experience, I swear I’m going to scream. You who feel you need to attack me and accuse me of lies, what good does it do you? Why go out of your way to jab at me? What payoff does it get you? It just upsets me and by the gods, I don’t need any more upset in my life!

So while I am excited to be able to take Christie home, finally, and I am eternally grateful that she made it through this horrific crisis, I am almost afraid to go home because I don’t know what will happen next…

We want to go home!

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…

Cancer throws curve balls

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?

It’s either meningitis or the lymphoma has spread. Either way, it’s SERIOUS.

Christie is in the hospital and it is VERY serious. We need prayers, candles, whatever. Please.

Two days ago, Christie became completely incoherent and unable to function. She cannot walk or talk, she is confused and doesn’t know what’s going on.

When we brought Christie to the ER early yesterday afternoon, the ER doctor ran several tests, including a lumbar puncture, and diagnosed her with meningitis (an infection of the brain). He assured us that we caught it early enough and she would be okay. They admitted her to Methodist Mansfield Hospital here in town, where she is being seen and evaluated by a team of great doctors, including one of our area’s most noted oncologists and a neurologist.

The oncologist who first diagnosed her last October is on the case and he told us this morning that he isn’t altogether certain that it’s meningitis. He is afraid it could be that the lymphoma has spread to her brain, which would explain why her central nervous system is so affected.

It’s frightening to look into her beautiful grey eyes. Instead of dancing and sparkling as they normally do, they’re vacant and blank. She has moments of vague lucidity when she will playfully poke my nose, try to kiss me, or grasp my hand and those moments are what keep me going.

Please send prayers and positive, healing energies… prayers… burn candles… whatever you feel called to do. My baby girl is fighting for her life right now and she needs whatever help you can send her way.

We have to head back to the hospital now, so I’m gone…

Blessings and peace… and thanks…
Melinda

I think most people would be overwhelmed… or is it just me?

Things just get so overwhelming sometimes that I don’t even feel that I have the strength or presence of mind to put even two words together in the correct order. At times, I don’t even get e-mails until long after they’ve been sent. At one point, we even lost our Internet and telephone service temporarily, which set things back more than a little.

Christie was recently back in the hospital for a little over a week. On New Year’s Eve, she had an endoscopy (where they run a camera into the stomach to see what’s going on) to figure out why her pain and nausea continue despite being on heavy medications and the chemo reducing the size of the tumours in her abdomen. What they discovered was a condition called gastroparesis, which is paralyzation of all or part of the stomach that results in reduced ability of the stomach to digest and process food. This was caused by a combination of the lymphoma, the chemo, and her meds. It may or may not clear up when she goes into remission and if it does, it could take several months to do so.

Around midnight on New Year’s Eve, the intractable pain, nausea and vomiting became so severe that it reminded us of what was going on before she was diagnosed. Christie couldn’t even keep down a sip of water. I called her oncologist, who advised us to take her to the ER. We did… and she was admitted early the next morning for observation. Within 24 hours of that, she was taken to the oncology wing, where she developed a low-grade fever and remained for the next week.

They did an MRI on her brain, another endoscopy, a colonoscopy, a CT scan, and she swallowed a “pill-cam” that traveled through her digestive system and sent pictures back to a hard drive that was attached via a harness that she wore for about 10 hours. Of course, there were also the standard blood, urine and stool analyses. We had four different doctors working on her case. I was terrified, especially after the gastroenterologist said he suspected that there was more cancer than we had originally thought. (Thank the Powers That Be, he was wrong!)

In the end, they said there are several things going on in her abdomen - tumours, a war on those tumours, gastroparesis, effects of meds - and she’s apparently just going to be in pain for awhile. There’s also the cumulative effect of the chemo, treatment that contains harsh toxins that take their toll on the body in many ways. We’re still thinking this can’t be right - seriously, she HAS to be in pain??!?!? - and trying to get her oncologist to take a look at things. However, her oncologist has been out of town for two weeks on a much-needed vacation. (What? Did no one tell her that she can’t do that while my daughter is under her care? *chuckle*)

The fever never was explained as they could find no cause, so it was ruled a “fever of unknown origin”, which they told us is very common with lymphoma patients.

Every week finds us taking Christie to yet another appointment - to see the oncologist, to have blood work done, to get chemo, to have various tests, to get meds… all kinds of things. She’s on three different painkillers, two anti-emetics, a med that helps encourage her stomach to work correctly, Nexium for heartburn and other minor stomach issues, prednisone for 5 days every chemo cycle, uhhhhhh… I know there’s more but I can’t remember all of it.

To make everything more difficult, our old pickup truck’s radiator keeps springing leaks so we have to rely on the Red Cross Wheels program and a couple of friends who offered to help with rides when they can. Unfortunately, those options don’t always pan out and Christie missed an appointment this past week to get blood work done. A used radiator wouldn’t cost a whole lot, it’s true, but we simply don’t have it. We’re struggling just to survive these days.

Every time I think I’m going to have a little bit of time to make calls to potential clients, something else happens and I’ve lost the opportunity. And, as C.R. (hubby) discovered recently, jobs are extremely hard to come by in our neck of the woods.

And Christie was denied SSI after her first application. We’re appealing, but we’ve been told that the Social Security Administration can be difficult to work with and certainly doesn’t view one’s situation with the same urgency was the individual would. *grumble-sigh*

Caring for her is a full-time job in and of itself. Trying to encourage her to eat is a challenge. A few friends have, on occasion, brought by a little herb to help Christie deal with the pain, nausea and appetite problems… and it works like a miracle. I am SO definitely a proponent of legalizing medicinal marijuana!!!

I keep wanting to get back to creating, but much like the desire to find work it often has to be put on hold while I care for my baby girl. I am still around. Life will never return to what it once was, but we will find a new “normal” and eventually, I will stop feeling exhausted, overwhelmed and anxious.

BTW, I don’t know if I mentioned it, but I did finally get on meds for my depression and high blood pressure, but they don’t seem to be doing the trick. As soon as I can find an opportunity to get to a doctor myself, I need to do so. I know that I can’t take good enough care of Christie if I don’t take care of myself first. But oh, finding the time and a ride to the doctor for me is an exercise in frustration! *wry grin*

I hope everyone had wonderful holidays and that 2009 brings each one of you all the wonders, blessings, joy, and love that makes your hearts sing and puts brilliant smiles on your faces. Once again, PLEASE forgive me for being so out of touch. I hope to do better in the future…

Peace,
Melinda

Today is not one of Christie’s good days

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.