I am ebbing and flowing, feeling the fear that comes with cancer, even when the disease is not your own. I am afraid that this week’s results will not be positive for Curtis; I am hurt by a another’s inability to have compassion for my (our) situation, and worried that I’m just not strong enough to survive all this. I realize this is selfish. After all, I’m not the person who has cancer… I wish I could say this has not taken a terrible toll on me, but it has.
read on... click here!
There have been times in the last year that I have felt this same way, but I have also felt very strong, competent, and glad that I can be the caregiver for my husband. The ebb and flow of fear is difficult to endure, but I find that if I just admit I’m scared and give myself over to it and let go, the episode concludes sooner rather than later. Fighting and denying tend to prolong the agony. I am looking forward to watching it flow away soon.
It is nearing one year since Curtis was diagnosed and I want to write about the fear I felt back then as it rushes back again. On Thursday, July 10, 2008 Curtis had a biopsy of the right axilla, where a tumor had been growing. On the following Monday, July 14, 2008, we received the pathology results. The surgeon advised us that it was indeed non-Hodgkin’s lymphoma, as suspected, specifically anaplastic large cell, null type and referred us to an oncologist. He felt the prognosis was good due to Curtis’s age (36) and we were hopeful.
I lost my job (hell, I may as well tell the truth, I was fired) later the same day. More about that in a later post. I have doubted and questioned myself a million times over getting fired. I knew I was not doing a great job during the preceding months because I was worried about Daddy and had a very hard time after he passed. I can beat myself up over and over, but it doesn’t change anything. I had to simply do the best I could and keep going.
The wave of fear descended. How would we get the treatment he needed? How would we pay for the insurance premiums, copays and deductibles that had to be paid by us? How would we pay the rent, the utilities, food, and all the necessities? I wasn’t even ready to actually think about the answers to all those questions; I couldn’t think clearly yet.
One thing I had to think about was going home. Telling Curtis on the day he was diagnosed that now everything was in jeopardy-ugh. Of all the times in my life for this to happen, now, really? It was surreal. He comforted me. I cried it out and then decided I had to immediately get to work getting back to work. There was no way I would allow my husband to get stuck on Medicaid. He would get second rate treatment and I would do everything in my power to prevent that. We had two more weeks of insurance and that was it; after that, we would have to buy the insurance at 100% cost, no more employer contribution. The family coverage was about $1100. If Reid qualified for CHIP, then we would get his for about $50, and to cover me and Curtis would then be about $800. I immediately began working the connections I had with people from the local mental health center and felt confident that I would be able to get on there.
During the time I looked for a job and waited to hear something, I began to feel dread. What if we couldn’t get Curtis into treatment in time? This was a fast growing cancer. What if he had to wait because of this? The surgeon felt it was so urgent that when the first oncologist was on vacation and couldn’t see us for four weeks, he referred us to another one. I felt I might be putting his life in danger, or that I already had. I had asked the surgeon about one of the larger cancer centers in Dallas or Houston… he said you better get your insurance in order or they won’t even look at you with Medicaid and if you have no insurance, you have to have $50,000 in your hands when you get there. Time was important. This was the absolute worst moment of my life. Up until then, the worst moment had been losing Daddy one month earlier.
What good is the best quality, most advanced health care in the world when you can die at their doorstep because you don’t have money?
The one thing I could not get over was that access to this amazing health care system was seriously screwed up. When you have to worry about you or your loved one dying due to this issue, it is wrong. Healthcare is a basic human necessity and therefore, a basic human right. Yes, I do have a right to healthcare. I should die because I am poor? Why is my life less valuable than another? Or more accurately, why is MY husband’s life less important than anyone else’s? It is NOT!
If I had it to do over again, here is what I would change: I would drop my resistance to becoming dependent on the Medicaid system. As it turns out, he would have gotten the same treatment either way. We may have ended up with a different doctor, but one who was just as qualified and would have had access to the same treatments. How I learned this is another story for later on. I would not have worried about going to work again immediately. I would have stayed home and taken care of my husband instead of leaving him home alone everyday to deal with chemotherapy side effects by himself. Turns out we would have received more benefits from the government assistance programs this way. That’s fucked up, but it’s the truth. Again, a story for later.
Amazing what you learn along the way. Just remembering all this makes me feel sick to my stomach. I have worked in mental health and medical settings most of my adult life, and yet was terribly unprepared. There was little help for navigating the maze of resources that exists. When I began to contact various agencies for help, I got many referrals… yay for me! Of course all that means is they gave me a list of other places to call who they thought could help us.
The story of the last year is not all bad, but much of it is. Sometimes I cannot put on my smiley, happy face. Let’s get real about cancer. It sucks. It trashes your life. No, Charles Bukowski fans, Love is not the dog from hell – Cancer is a Dog from Hell!
No comments:
Post a Comment