Sunday, July 27, 2008

Slacking, worrying and new jobs- oh my!

Sorry I have not updated, I just havent really been in the mood. Sometimes my blog gets me down because its all about my ameloblastoma, but sometimes I need it, so here I am again. Things have just been crazy this past week, first finding out I have to have yet another surgery, then the worry there wasnt enough bone to finish the surgeries, and then finding out there was, then the anxiety over getting a job, and then getting that job...told you its been insane.

Basically I am looking at another surgery here because part of my plate has to be removed. This sounds like it is fairly common, though I was not expecting to have another surgery like this again, thinking I was nearly done. The part in my mouth that is exposed is not getting any smaller, in fact it has gotten a bit more exposed even, and the doctors are saying it has to be cut out because as long as it is exposed I am at risk for infection. They havent decided whether they need to remove all of the plate or just that small part yet.

Basically the plate is only put in for stability when they cut the tumor and jaw bone out, and some doctors (from what I understand) remove it anyway after the patient has formed a new stable base of bone under it. It will be done intra orally so no neck cutting (thank god, I cant handle that again, just cant do it) and should be out patient surgery. My biggest issues are always with swelling, so I am scared and not looking forward to it of course.

My biggest concern now of course is my new job I just got- yesterday! We are hurting a bit financially, I have basically put my life on hold for 3 years now to deal with all of this and we just cant do it anymore. With as much as gas and food have been lately we are no longer able to get by the way we were on just one income living in Northern California, its just not happening. So I got a small night/weekend job at Barnes and Noble, a local cafe and bookstore, to supplement our income and help out with expenses. Its one of my favorite stores, and I have almost 6 years of experience working in a coffee shop from when I was in college so I think they are going to start me off in the cafe which will be nice. I can get out of the house a few hours a week and be around other adults which should be therapeutic and also bring in some income. SO no more saying I need surgery tomorrow, and giving me no time in advance! I am going to have to let them know I will need 2 weeks now to prepare for any procedure, because I need this job and do not want to lose it.

Having this new job is really important to me not just for the money but for me in a way its starting to live my life again. These past years in dealing with this thing have just been that- dealing with doctor appointments and surgeries and healing and all of that makes you forget you are actually human for a while and you feel like a walking medical anomaly. It is very draining. I am excited about what is to come, I just hope that things stay on the upswing for a while now because for a while there I was very worried about everything.

As usual, I'll keep you all updated (or try to be better about it, at any rate).

Thursday, July 17, 2008


I have been dealing with some depression lately. Its odd because it strikes me at such weird times, never around the times that I am going through the hardest things, but rather it sneaks up on me when I seem to be doing well and just kind of takes over. I know a lot of it is our financial issues, and us needing to be in a better place in terms of the money that is coming in. Dont get me wrong, we are doing fairly well for living in Northern CA on one income, even if we are paycheck to paycheck, but if I had never had this tumor we'd be a dual income family for sure. First of all, I am not meant to be a stay at home mom. I just feel like I am meant to be out working, using my brain more than I do here at home all day long, and just being around other people more. I find myself bored alot, and feel understimulated all day long, as well as short tempered and just all around tired of being home all day long. I have been looking for a part time job but my hours of availability are far from great since we cant afford daycare for 2 kids and no one has called me back yet.

I also have the worry of if I do get a job when will my next surgery be...I am scared I will get a job and start working and then BAM! have to have another surgery which will have me resting for a few weeks again and I could possibly lose my job. It seems that from here on out I am only going to be faced with outpatient surgeries but who knows what will happen between now and then. "We're almost done"- I have heard that before. The one thing I have learned out of all of this is that with ameloblastoma, nothing is predictable or guaranteed. I have always been the kind of person who likes guarantees and to be able to see what is going to happen next. Its just a part of my personality and being super organized, and that just hasnt been a thing I have been able to do these past few years. There are times I feel just so out of control with it all.

We are also dealing with a lot in terms of Ashley (my oldest) and trying to figure out what is going on with her behaviorally and mentally/emotionally besides the ADHD diagnosis. She hasnt been sleeping well for a few weeks now due to her medication, and the lack of sleep is definitely taking its toll on me as well. These darn hives are still sticking around too, I am starting to think its related to her not sleeping and the added stress I have on me now worrying about her at night too. So I am still taking the Benadryl which makes me feel woozy and tired all day, and that is contributing to the depression. Its just a lot all at once I think, and I am sleeping far more than I should and snapping at the people I love far more than I normally do :(.

Anyway, I just keep hoping it will lift. I have never been able to stick to a pill when it comes to my depression, it seems to come and go anyway and is never around 24/7 so its not like it is anything I will be going to see my doctor for. Maybe I will get some good news on Monday at my next appointment. They should have my lower denture ready, I hope it fits nicely and is more comfortable than the thing I have been wearing lately.

Monday, July 14, 2008

Waiting and waiting...and itching

Well, I havent seen my doctors for a while and they dont need to see me again until the 21st, so I have gotten a little bit of a break which is nice. They are in the process of making me a denture that has teeth on it for me to wear while we are waiting, as the implants still need a bit more time, and we are also hoping that the exposed area in my mouth will cover itself up a bit more. To be honest it looks the exact same to me all the time, though last time I saw the doctor he said it looked a little smaller and seemed satisfied. I dunno what they are seeing that I am not so I just dont look in there except to make sure that I have rinsed everything out of my mouth after a meal.

A new development I have had lately that I do not think is even related to all of this is a bad case of hives that have cropped up, and have been here since Wednesday night. I am so itchy and horribly miserable. I have been taking Benadryl around the clock, as if I go longer than 5 hours without taking another dose they crop back up again. They are awful when they come and just take over my whole body in patches, with a series of raised bumps that all just mesh together to form one big sucky patch of itchy crappiness. *Sigh. I am eagerly awaiting their departure. I am not under any more stress than I have ever been in, in fact things are fine lately, and believe me I know stress and have been under huge amounts of it before, and in the past it has been the only reason why I have ever had hives, and never longer than 24 hours either.

Anyway, I will update you all of course when I know more.