1st Round of Chemo Over...Pain and Exhaustion Persist

2/25/15

Well, last Wednesday, Jimmy completed the first full round of chemo. We had to postpone the treatment from Tuesday because of the weather. Its not bad enough Jimmy is going through chemo, we have to worry about the weather allowing him to even make it to the treatments. This time he got both chemo drugs, Gemzar and Taxotere, along with a host of other drugs. This treatment took about 4 hours and left Jimmy tired afterwards.

The next day he was scheduled for his Neulasta injection, the shot that helps boost his immume system and costs $3,000 for one shot. That morning he had a severe pain episode and we weren't sure whether or not we would have to go to the ER or not. I called Jimmy's oncologist and they said to come in as soon as we could so they could evaluate him. They said he may need to have IV fluids for hydration or that his pain medication wasn't working well enough. Well, we made it there and he was able to get his injection. It was determined that he wasn't getting enough pain medication to keep the pain under control. Here we go again...I see another fight with the insurance company in my future.

As predicted, I spent 2.5 hours and when to 2 pharmacies to try to get his medication...this was done during treacherous driving conditions...why wouldn't it be?! Of course, due to insurance restrictions, I wasn't able to get everything that Jimmy needed. This is such bullshit. I am so tired of fighting to get Jimmy the medication he needs. If I call a pharmacy to see if they have what I need, they either tell me they can't tell me if they have it or that they don't have it at all. I guess I'm just expected to drive around from pharmacy to pharmacy until I find one that a) takes our insurance, b) has the medication in stock and enough to fill the medication (most don't have enough), and/or c)is willing to call other pharmacies if they can't help me. It is a nightmare every time I have to get medication for him. If I get to a pharmacy that doesn't have enough of the medication and I decide to get what they have, it voids the rest of the prescription so I have to go back to the doctor to get another one...of course, that means driving an hour to Philadelphia to get it. Ugh.

In the past week, Jimmy has continued to be in pain...off the charts kind of pain...and we have contemplated the ER a couple of times. He is feeling very weak and chemo'd out. The metallic taste in his mouth is back and food is starting to taste funny to him. At this point, Jimmy is either awake and in excruciating pain or asleep and out of it from the medication. He is having a zero quality of life right now. I just want him to have some pain relief...and soon. It seems like the pain in his left groin/hip and knee area is in pain all of the time. He has started having pain around to his back on the left side as well. It seems like the chemo isn't doing anything. I thought by now, some of his pain would start to subside...not get worse, which is what is seems to be doing.

Yesterday, I had to take Jimmy to have blood drawn to check his levels and it was all he could do to shower and get out of the house. Just showering (he's using the shower chair again because he can't stand for that long) wipes him out. Getting around the house is very hard and he walks so slow...like a little old man...and sometimes he has to lean on me to walk. It breaks my heart to see him this way. I still can't believe this is our life.

Jimmy has been very depressed and I know he is ready to just give up. While I know he won't, he realizes that Logan needs him for as long as possible. That is both of our priorities...making sure Logan's life stays as close to normal as possible. Its been hard and, especially since Logan is aware of everything that is going on, it continues to be hard. Logan, however, seems to be doing okay. I know he is sad and is tired of seeing his Dad so sick but he really does seem to be handling it well.

As for me...well, here goes my selfish rant about how I feel...its been a rough couple of days...

I am so sick of this shit. Our life sucks. I am tired and exhausted every single day and there are days I wish I could just stay in bed with my head under the covers and pretend that this isn't happening to our family. I am tired of being a grown up. I don't like feeling lonely but I need time alone. I want someone to take care of me once in a while. I'm tired of not being able to cry in my own home, because it isn't fair to Jimmy or Logan. Jimmy has said he doesn't want to see it and that he needs me to stay positive. For obvious reasons, I don't want to get upset in front of Logan. I want to guilt-free leave the house to do something fun once in a while. I wish we had disposable money to spend or, at this point, just money to pay our bills. Jimmy doesn't want me to say anything about that but, guess what, this is my blog and my rant. We are struggling financially in a way I never thought possible. We used to be able to take two vacations a year and buy what we needed and more. Since Jimmy got sick 2 years ago, thankfully we had savings we could use to live on when he couldn't work and the business wasn't working. We were very lucky to have a backup to help us because I know so many people don't but now that reserve is gone. It scares the shit out of me that we now worry about how to pay our household bills. Jimmy can't get social security disability and there are hardly any programs out there to help us. We fall through the cracks...we don't have money now but because we did in the past, we are excluded from help. Our next step is county assistance...talk about embarrassing. I can't go to work right now because Jimmy needs me to take care of him. I will post our fundraising link here because, at this point, I have no pride left. This is not who I am...I don't like to ask for anything but we need help and I am asking you to help my family. I hate this. I also find myself being envious when I see my friends doing fun things with their families. I can barely hug Jimmy without causing him pain. I see life moving around me but feel very disconnected to it. Right now, I don't want to know if anyone else is sick, or hurt, or tired...frankly, I don't give a damn. Unless you are living our life, you have no idea what its like. It sucks like nothing you could every imagine. I am tapped out for sympathy for others right now. I know I sound like a selfish bitch but, guess what, I don't care. Tomorrow, I may feel differently, but right now I don't give a shit about anyone else. My only concerns right now are Jimmy and Logan. Okay...bitchy, selfish rant over.

There are some positives though...I do have one girlfriend who has gone over and above to make me feel special and pampered without pitying me...thanks Jade! I have another friend who helps me constantly with Logan and for that I am so grateful...thanks S. And, of course, without you, Lisa, I have no idea what I would do when I feel like crying my eyes out...even though you live so far away. I am grateful for all of the support and prayers we have gotten from people we know and people we don't know. I have found making friends from the Facebook Sarcoma groups has been helpful. There are people going through the same thing at the same time and there is comfort in that so you don't feel so alone. I am grateful that Jimmy is still here and I can touch and kiss him and tell him I love him. I thank God every day for my son, who is so sensitive and caring and does everything he can to help me and make me feel better. A hug from Logan seems to make it all better, if only for that moment and that's good enough for me.

Jimmy's next chemo treatment is next Tuesday and I will keep you posted on how that goes...thank you for listening...again. xoxo