Tuesday, June 8, 2010

Support for Family

So much feels out of control when one is diagnosed with cancer. For me, it was that major worst case scenario. The worst diagnosis one could possibly get, I got. The bad news has just been coming steady every since. I know that I would hope to help others know what to do when their loved ones get diagnosed since I have lived through it for 3 years so far.

I know that what I had was a major sense of spinning out of control. The first thing I can remember is that I had to give up working. Unlike others I actually enjoyed working and earning a living. I worked doing something I loved. I remember the first person that suggested that I file for disability. I actually got mad. I screamed at them that I was NOT disabled. I associated that term with someone that is completely unable to do anything at all. I don't know how else I thought of it other than that I didn't think it applied to me. I then thought about the previous months that I had been working. The misery that I experienced just getting up and going to work was horrible. It was very hard for me to leave working. I loved my work. It was funny because of the amount of pillows and things like that I ended up bringing home at the end because I was trying to make myself comfortable.

I ended up getting approved faster than most have seen because of how detailed I made my disability report. Some of the people I have spoken with can not believe that I was approved so quickly because some have been waiting years. Although I did get approved quickly because of the nature of my claim, and the fact that it was expedited through. I did have to wait for the processing and the payments to start. So it was 6-8 months for that to happen after I got approved.

I cant tell you the adversity Chris and I went through during that time. That was probably the worst because we struggled more than we ever have, even when we were young. The family would hold garage sales and things like that but it only went so far. I have had some of my family come through for me as well. Whether it be Aunt Judy that is there for me in every way, or my mom and sister who come and take me to every appointment so I don't have to be alone, or Aunt Carol bringing me lunch once or twice, or others that would donate to me in other ways such as gift cards or prayers of some kind. Aunt Janet and Uncle Jorge, my grandma, and Aunt Mary Margaret have sent prayers of love and care my way and have been there for me. Even still, it is but a mere drop in the bucket to what I could be making if I was working. I know that. Chris and I have had to simplify life in many ways. To tell you the truth we have done it. When it comes down to it, we have had time thrown in our faces, we really just value being together. He handles stress like a steam engine because he has really been a great person and caregiver to me.

I think if you are faced with having to file for disability, the more detailed you can be the better. Remember that doctors are going to be reading what you write, and it has to make sense to them. Also helping getting things mailed off or faxed in will be a big deal. Your loved one will have enough stress just filling the thing out and going through major treatments or medicines or whatever, so helping them getting things off in the mail or whatever it is, that would be great for them as well.

Even though mine was an office job, the tumor I had caused major discomfort because of the placement on my spine. It fooled my chiropractor for months while he was treating me for sciatica, all the while I had Stage 4 Cancer. It was St 4 because by the time they caught it, it had spread already to my spine. S1 and S2 is where it started spreading to at first. No one can prepare a person for something like that. I also had a lump that you could feel in my left breast. When I was examined I was told that I was too young to have breast cancer and there was no real sense of urgency from them. I was only 29 years old.

A since of normalcy I would have given up anything for. On top of that I lost my brand new mustang GT for which I saved and saved up for. We finally put our money into the car we wanted and when prescriptions alone are thousands a month, I was unable to keep my brand new car. So again it was another thing for me that felt it was ripped from me. After that I just lost it. I didn't eat for 8 months straight all the while having terrible pain shooting down my legs and down my back. Nerve pain and the first radiation made me so sick in the beginning too. I couldn't cook, or clean. Taking care of my family was just another thing I couldn't do. It made me crazy because being a mother and having a family is what I have prided my life on and all the sudden I could not do any of it. On top of that all the people I loved the most seemed started fading from my life more and more. I didn't do anything wrong to have this diagnosis on me. I didn't know why the people I loved stopped coming around.

I know it could not have been easy for anyone around me. People were in such a shock that I got more and more disbelief than I did empathy or compassion. I know that on top of everything that I was prescribed the wrong medication in the beginning. I had severe withdrawing that made me miserable. It was every 8 hours that I would have cold sweats and shakes. It was a miserable thing to experience.

The only thing I can tell someone who has a close family member who is experiencing chaos like this is to provide as much of normal life as you can for them. Help them with their medicines and refills. Help them not have to worry about dinners or cleaning. Help the kids with their homework. Help getting to church. Normal everyday things. Reminding that person that they are a person!! It is most important. It is so important for you to make them feel like they are a fighter and they are not going anywhere. Make sure that they know you are there for them, even if it is just to hang out and do nothing. It makes a difference. We need to be able to talk things out. So much goes on in the medical world that it is difficult to keep up with all the choices one may have in their treatment plan. It may help for you to help them with research and information. Make sure that you do not throw it in their face. Let them look at it at their own pace and their own time. I know that I didn't want all this information clouding my head on "what if's"....

The last thing I can think to say is that you may offer help and be refused several times. Just know if the person tells you they don't need help, they definitely do. Sometimes its hard...and I can tell you first hand that I needed my loved ones so bad and I felt alone. I did not ask for help, I didn't think I needed to. I felt that my info was already pretty much out there for everyone to know about and I felt that if people couldn't figure that out then I could not help them. It should have been obvious.

You could not believe the horrors I have faced and the strength of my family. I don't know how we have pushed through for as long as we have. We only continue to grow closer and get stronger daily. We have also seen the caring that strangers can give. It brings a certain hope and love and knowledge that you are loved and prayed for by most people that don't know you and have never met you. They have only heard about you. I have been praised with such a strength and bravery by others who root for me from afar and care for me through someone else.

All I can do I go on being me. I try to take what I learn everyday and live. Just live!