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

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

This entry was posted on Monday, February 16th, 2009 at 11:42 PM and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.