Its been a bit, per usual, but Im hoping to do this weekly...at least.
Dan had his first chemo session on September 1st. It went alright but not perfect. He is to have 2 medications used. The first medicine gave him a horrid reaction...felt like his back was being shot up so they had to stop that immediately and just do the second medicine. That went fine.
What has us irked is that the dr told him, after the fact of course, that about 50% of patients have that reaction to the first medicine. Well, gee, that was nice you knew Dan had a degenerative back issue and decided it was ok to give the medicine that could harm his back anyway. The dr told Dan it was a shot to take cuz you never know if the reaction would happen or not...well why the bloomin' hell would you give it a shot on a man with known back issues??? Sooooo stupid.
Well, there is an alternative to the first medicine and it will be given to him tomorrow at round 2. Hopefully that goes better. Only wish I could go with him for this round but I wont be able to since there is noone to watch the boys. Ahhh well, I will call him at some point and see how he is and all that.
We are adjusting to living at this hotel but its not easy nor fun for any of us. If the lady had just thought of our situation it would have been better.
Just been a roller coaster ride. The HopeLink lady got us into this extended stay hotel and it wasnt til we were checking in that we were told it was a week only. Apparently, unbeknownst to us, they only do a week at a time and extend as needed or if they so choose to. Then we were informed the HopeLink lady only would allow us to be in a one bedroom room. Apparently, she forgot(or didnt care)that Dan needed a bed to himself for chemo and so it couldnt be he and I in one bed and the 3 boys in the other. Who does that to people they are supposedly helping?? If you are gonna be in a business where compassion is key...have it. If you cant muster compassion anymore then get a new job.
So we got through the chemo and our first week but it ended the day after his first chemo session. So we call and she begrudgingly gave us another week and that was it..she said. See, she was pissed I hadnt found a job cuz apparently in a city with over 14% unemployment and thousands looking I was supposed to have found one in a weeks time. Not only a job but one that could pay rent and utilities and such on a new apt or home. Ya...ok, her brain left the building long ago. She KNEW I couldnt work as I was Dans caregiver and a homeschooling mom. She KNEW I wouldnt and couldnt look for work yet still expected me too even knowing Dans condition because, according to her, he wasnt disabled and I couldnt be a caregiver unless the SSA(social security admin)said he was and it hadnt when we first visited with her. Thankfully, it has since but still...she clumped us with all the other hard luck cases she sees and we arent exactly the same. NONE of those she sees is quite the same and its unfair to lump us that way. Dan has specific needs now that he's doing all this and she knew that but chose to ignore it.
So, we got everything straightened out that we could and turned in our application and such for more perm. housing now that Dans getting some SSI. Still havent heard if we've been approved nor have an actual interview set. The lady at that place(Family Promise is the name of the organization)hasnt called us back after we busted our butt to do all she requested. Now Dans gonna have chemo again tomorrow and we wont be able to do anything for close to a week while he gains some strength back. He may be able to do a phone interview and she could come here but thats about it.
Its so frustrating. We just need a place to lay our heads and have some peace and space. We need a spot where the kids and I can do their schooling and have some space to play decently. We need a space where Dan can have a room of his own to hunker down in while he recoops from his chemo sessions for the next 3 or so months. Why is this so hard??
Im angry a lot too. I understand its normal so Im not totally surprised by the feelings and I also am not letting them take me over because I logically know why Im feeling them. However, they still pop up from time to time.
Im angry at the people that say they will help them pussyfoot around or treat us poorly. Im angry at the lies dealt us. Im angry at having to ask for help, monetarily or otherwise.
Im angry at Dan. I just wanna yell at him that its all his fault. His fault he got sick, his fault he isnt stronger, his fault he lost his job and we lost the house, his fault he's on all these meds, his fault he's doing chemo and acting like a sissy and sleeping so much instead of being a part of the family. Im angry he's not gonna be able to work again. Im angry he's not a better help with the boys and wont take into consideration that they are kids in a tough spot and even tho he seems to know it he still cant pull his head out and overreacts. Im angry at myself for feeling like someone its my fault and I failed him somehow. Im angry at myself for failing my kids and not having a desire to get a fulltime job and be all happy homemaker, caretaker, and bread winner. Im angry at myself for not being able to be as strong as I feel I should be.
Im angry at the world in general for the stupidity and double standards that exist for stupid, stupid reasons. Im angry that the people around me cant see the bigger picture from the little, NOTHINGS that dont need to be fretted about but that seems to be the ONLY thing they see. There are more important things in this world then whats for dinner or whether that board over there is red or blue or whatever the case is. SEE the big from the little people....
Ahhhhh, it feels good to write it down and logically, I know anger is a part of the trials we are going through. Its a grieving process and I am grieving even if I havent 100% lost anything yet.
I love my husband dearly and Id go to the ends of the earth for him. I love my kids a ton and would do anything I could for them to keep them safe and happy and enjoying life. I love my family and friends for keeping us in their hearts and prayers and all that. I realize I seem like a broken record of whoas and it irritates me that I cant seem to share positive things happening in my life. I dont like feeling like a whiner but thats all I feel like Im doing lately...its unnerving.
I do love my life even with the downs we are experiencing and we will get through them to see that lovely pearl shining...just will take some time.
And thats all for now.
5 days ago