Bumps on the Road and Bumps on my Head...

Last Thursday I met with my oncologist before I started chemo yesterday (Tuesday) because she was going on vacation. It wasn't the appointment I was expecting. We (my parents and I) were there for an hour and I left red eyed and crying. I expressed to my I oncologist how I don't feel that doctors are doing all they can for me. Here I am, healthy, was in extremely good shape and always taken good care of myself yet doctors just throw me aside because I have metastasis (aka: mets) so they write me off. Maybe they should be writing off the people who have never taken care of themselves or were smokers for X number of years. But no, they give them chemo, do surgery if needed and little old 85 year old Johnny will make it another 10-15 years. I am turn TWENTY-SEVEN in 10 days. Not 57, 77 or 97. I have a lot I would like to accomplish in my life and I would like to have wrinkles and grand kids but that isn't going to happen. 

We discussed my chemo. I am completing my 3rd of 6 cycles this week. I will have a CT scan at the end and see how things look. If the chemo has worked a bit, we will discuss keeping the chemo going. If the chemo hasn't worked at all and things may possibly be worse we will look at what my options are there. And, if things are completely better, meaning all of the mets are going (cancer will still be in the bone of my sacrum) I will be in what my oncologist calls a grey area. This means I just wait for the cancer to spread again and when it does it will be worse than this time. The grey area could be 5 days or 5 years but it will come back. As at some point in time if that is the case, I will reach my limit with chemo as my organs will begin to shut down. 

I am so frustrated with our medical system. In the very beginning in 2011 I waited over 13 hours in emerge multiple times and doctors ignored me. Maybe if they had listened to me from day one I wouldn't be in this situation. I was also told that my cancer was very treatable. I was to do 6 months of chemo and then have the bone cleaned up. Except the cancer in e bone was way worse than they were expecting. I think they should have done surgery then. Even if it meant I would have lost my leg. The bone is the root of the problem and it doesn't seem like anyone is trying to help. I am not the only person in the world to ever experience this or needed surgery in my pelvis. Find the doctors who have done something like this I don't care where in the world they are. I told my oncologist I don't feel that anyone is on my side and I have been written off completely by doctors. That is why I have turned to naturopathy and alternative medicine. I need to do everything I can. 

My oncologist told me that if surgery is possible I may never walk again. I said ya but at least I would be ALIVE. 

Some days I don't know why I am bothering with chemo if there is zero hope and the end result will be the end. Let me tell you: it is extremely difficult to find your will to live when you know you are going to die. 

I was at the cottage all weekend with my family and started taking my antibiotic for this chemo regime to prevent infection(s) from one drug in particular, especially lung infections. I noticed these bumps on my head and they were spreading. Rash is a side effect of the medication. We asked the doctor yesterday when I got to chemo and apparently it's folliculitis, an infection of the hair follicles that can be caused by irritation. I was the second case the doctor had scene yesterday morning. I was put on another antibiotic 4 times a day (you don't want to know how many pills I take a day). Hopefully it will clear up soon.  Not sure why I got it but my hair falls out from a chemo every-other cycle so it has 6 weeks to grow back a bit. I have a little buzz cut right now but I will likely lose that in the next 3 weeks again. I actually had to trim my neck yesterday for the first time in a long time. That makes me feel like I actually have a decent amount of hair! Ha! 

I haven't been sleeping at all still. All weekend at the cottage I was up all night watching shows on my laptop. I thought it was the steroid but at my visit Thursday to my oncologist we talked about reducing it because I had gained 6 lb in a week... I can't have that happen again!! She said so you are taking 6 pills a day during chemo and I said ahh no 2. She couldn't believe I hadn't been taking the proper dose and not gotten sick. From  how the nurses had written it on my med schedule that's what is looked like they had written "twice a day". So I am stopping the steroid all together and hope I don't feel nauseous. I still take zophrane ( a good anti nausea) an hour before my chemo   I've never taken anything for nausea at night. 

Good news is : I lost 2 lbs in the past week! I've been walking as much as I can and started my 2 lb ankle weight Physio workout I was given last time. I can't do any arm weights or yoga with the picc in my arm but at least I can help boost my metabolism a little bit and get a few inches off I hope. It would be to fit in my shorts and jeans and not have to wear yoga pants and sport shorts all the time! Oh well. Good thing I don't go out much 

Oh ya- on the weekend mom as I walked downtown Alma to get milk at the Irving. I am so used to people's staring I will usually say to whoever I am with "stare much?" Because they notice it too. Well, there were 2 kids about 8 and 10 with their parents and they were staring at me like they couldn't figure out what planet I had just landed from. They were definitely old enough to know better. Their parents were beside them ad didn't say anything so as I was walking out the door I turned and said "take a picture". What I really should have done is made a crazy face, shake my head as make a noise. Honestly, people. That is rude and teach your kids some manners before I do it for you. But if the adults need some manners too I won't be scared to teach them, either!