Golden Fog

I have been remiss in my posting lately, mainly due to the fact that I have not had the energy to write anything at all creative or positive. I chose this picture because it is just beautiful and I could use some beauty in my life right now. The name of the picture is "Golden Fog." I feel like I am in a fog...but, it is not golden! It is cold and damp, and dark and I cannot find my way out of it. I hate fog. I hate feeling so helpless to do something to help the ones I love. Between the stop lossing of my soldiers and the illness of my son, I have not been in a very good place lately.

Nick has not really been feeling well for NINE MONTHS now. It is hard for me to grasp that he has been going through this process for that long. I just want to state for the record that I can't remember the last time he has really felt good. Since last week, my nurse radar has been on high alert and I am sorry to say that it has once again proved to be a reliable predictor of things to come.

Last week Nick's symptoms included, but were not limited to the following: headache, neck pain, lower back pain, mild cough, pain in his legs, numbness and tingling of one of his arms, fatigue, fatigue, did I say fatigue, as in tired all the time. GI disturbances, shortness of breath, rapid shallow breathing, wheezing noises with deep breath, activity intolerance, limited reserved to do anything, pale skin color, rapid pulse, mouth pain and sensitivity, loss of appetite, painful mouth sore where he bit his cheek and it still hasn't healed in over three weeks, dry mouth, cracked lips, painful acne/zits caused by Dasatinib, and I'm not even going to address the emotional consequences of feeling this shitty 24/7. So....

Thursday morning we get a call from Dr. Frosty, he tells us they do not want Nick to get his treatment (LP & IT chemo) because it will be too close the the radiation that is due to start this Tuesday. OK...I guess?? Nick is concerned to miss a treatment, but, the doctors seem to think it will be ok. We go to hop anyway to have Nick's labs drawn and see doctor. Nick proceeds to tell Dr. Frosty about all the things above, a brief examination takes place. Dr. Frosty tells Nick he looks great to him???? I think Dr. Frosty needs to get his eyes checked....immediately. Turn the burner up and bring me to a boil! Is my head still on my shoulders, cause it feels like I just blew my top.

Counts come back low again...WBC down to 1150, ANC 450's, Hct. 32?? So much for the "upward trend." Discussion of giving Nick some blood, just to see if it helps, but, it is already 3PM so we can't get blood on Thursday. So we will wait until Monday to get the blood. We head for home. I am quite demoralized, BECAUSE NOBODY EVER LISTENS TO ME WHEN I TELL THEM THAT THERE IS SOMETHING WRONG WITH MY SON!!!!!!

Fast forward to Sunday: Symptoms have continued and or worsened. Nick has been running a low grade fever 99's for past two to three days. Today it was up to 38.1C = 100.5F. The infamous "look" has returned, along with puffy eyelids, paler color, cough has worsened along with spells lasting like 20-30 minutes of coughing. Appetite has been fair and luckily Nick has been able to maintain some food and fluid intake. His wisdom tooth was bothering him on Sat. so we called dentist and oncology MD - they wanted him to start on antibiotic, so now he is back on another med...and still having fever through antibiotic. His cheek and his lip still appear swollen on the right side of his face where the wisdom tooth and mouth sore are acting up. Nick was supposed to go out to dinner with Kate tonight, he did not go, because he just did not feel well enough. I wanted to call the doctor tonight, Nick did not want me too. We will be there bright and early tomorrow, so I guess that is soon enough to get this all sorted out. And to rub just a little more salt in an already painful wound, Nick is supposed to start RADIATION on Tuesday!

I really don't know how this will all go down right now. I am worried and I am so tired of fighting the system. It is like no one can do anything until it is an emergency of some sort. I really don't know what more I can say. I feel like a zombie just going through the motions. How many times can you bang your head into a brick wall before you lose consciousness? Nick has to get a lot of scans and X-rays tomorrow in preparation for the radiation treatments to begin on Tuesday. It will be a long day. One bit of good news from last week: Nick's spinal fluid remains clear of any detectable badness! Wish I had more good news to throw your way...but, the reality of the situation is that it mostly just sucks really bad right now!

So I want to title this post "Life Sucks" but, thought better of it, because life is life and it's better than the alternative. So I asked SARA what I could call it instead and thus the title. Oh yeah, and if you haven't signed the petition against stop loss, PLEASE DO SO TODAY!! This will make me happy for a little while anyway. I will post the link on the right side of my blog. And please tell your friends, I bet they don't know anything about stop loss! Please educate them.