My water was shut off today. That is such an embarrassment. Thank God for my mom and step-dad or we would still be without water. Traveling to Tulsa to go to CTCA really took a big hit on our finances and we are behind on all of our bills. We were doing so good until I got cancer. The guilt I feel is tremendous. I cannot even begin to describe to you how badly I want to help my family get out of this financial rut...and right before Christmas, too. How is a person supposed to not stress out and remain positive when that person is watching her family lose things little by little? If I didn't have my anxiety and anti-depressant medication, I would be in big trouble.I am so done. I hate money.
I want to now take the time to talk about all of my misdiagnoses for the past year and 3 months.
I started running a low grade fever back in August of 2014...well, let's go back to March of 2014 first. I woke up and could not speak. My throat was swollen beyond belief and I was extremely hoarse. My mother took me to the ER. They initially thought that I might have an abscess on the back of my throat, but found out that I did not. They diagnosed me with a bacterial infection and put me on antibiotics. By the way, I did not get any better for almost a month. I found that to be an odd illness, but after it cleared up, I thought nothing of it until August.
I was sitting at work and my throat started swelling again. They sent me home. I have not been able to return to work since. I have been running a fever every single day since August of 2014. My primary care physician could not figure it out, so he sent me to my ENT. He scoped my throat and did not see anything really unusual so he referred me to an infectious disease doctor. She ran so many blood tests...I thought I was not going to have any blood left. My ANCA was abnormal and I had an antibody called Myeloperoxidase in my blood. I also found out that I am a carrier of mono. She initially thought that I had Microscopic Polyangiitis. Then, I went to see my nephrologist who diagnosed me with Wegener's Granulomatosis instead. I had several biopsies done to try and confirm this diagnosis, but none of them except my nasal endoscopy could prove anything besides the fact that I had a ton of inflammation present. My nasal endoscopy showed what he thought to be Wegener's.
So, I was continuing to get sicker and sicker. I had already been hospitalized twice for whatever I was experiencing. Finally, I saw a Rheumatologist who wanted me to have a biopsy of one of the nodules in my lungs. And voila! Wouldn't you know it? I have cancer.
There are three points that I would like to make:
1. That cancer is a sneaky, cruel, and insidious disease. Looking back it was clear that I was getting sicker and sicker and had been for about fourteen months prior to my diagnosis. But at the time, it's just so easy to dismiss a cough, a fever, throwing up blood, and feeling more tired than you ever have been in your life. Because it happens so slowly, it is hard to miss the lack of appetite and the swelling, or the excuses you make for taking the elevator instead of the stairs.
2. I can't prove it, and this is just my opinion, but I have no doubt in my own mind that my misdiagnosis was in large part due to the fact that I had government insurance, I was too young for lung cancer, and so, it was just easier for them to misdiagnose me before they all sat down to really look at all the facts. Don't make my mistakes. Find another doctor that you connect with and who takes all of your concerns seriously. Get referrals,. Get tested. Refuse to be dismissed.
3. The elephant in the room: smoking. I smoked every day for 15 years. I never imagined I would get lung cancer, especially not in my 30's. And, this type of cancer is not caused from smoking. Cancer acts very differently in different people. While some of us can get away with smoking a pack a day until we are 90, I think that for some of us, all it takes to contract Lung Cancer is a couple of cigarettes a week. What is also notable-but hardly surprising- about the general discourse is how there is still an implicit emphasis on non-smokers being more deserving of a cure. So, on top of all the other bullshit that cancer throws at you, Lung Cancer has the added sweeteners of blame and guilt. This in turn, acts as a silencer for those of us, who, had we not smoked, might feel more entitled to have a voice in this debate. Instead of speaking up- screaming (or wheezing :( ) for a cure for this woefully underfunded disease- and taking the tobacco companies and other environmental polluters to task for their actions, we focus on our own guilt and quietly accept our punishment.
I am honestly trying so hard to stay positive through all of this...even when the negative keeps punching me in the face. I am trying to keep the hope despite all of the seemingly hopeless worldly things that just keep piling up...and I am helpless to stop them.
I have shared my sense of despair with a few trusted individuals. I have been clear eyed and practical about what I could and could not change. There were some difficult weeks where my focus was on merely getting by. However; during this time, I was making some important decisions. One, I was going to start getting my affairs in order (which I have already written them down), two, each day I get to spend with my three children is a gift. And three, I am going to stop procrastinating creatively: I will continue to write, learn how to crotchet, and figure out a way to start cooking again. And, as soon as my SSDI comes in, I will finally be able to maintain some sort of financial independence.
When I first started blogging, I wondered if I would ever be at a loss for words. No actually. However; that doesn't mean that I am able to always get them down on paper. My preferred excuse for lack of content is that I am just too busy going about the business of living to write.
Sometimes, the opposite is true; I am either deeply depressed or feeling physically miserable. Either condition has a stultifying effect on me. At it's worst, I lay in bed in the fetal position all day. At its best, I am able to trudge through simple tasks like doing the laundry and teaching the kids. I console myself with the notion that at least I am not bent toward self destructive behavior at these times- no excess, bingeing of any sort, and certainly no raging. Just an utter and totally useless stillness.
For the past week and a half, I haven't felt very good. As a matter of fact, I have felt worse than usual. I have been running fever and wheezing quite a bit. I have also been throwing up blood. My primary care physician is out of town until the 30th. So, I am thinking about going to Urgent Care tomorrow.
I speak out for myself and on behalf of those who no longer can. I keep talking about my cancer, because so far, I am not one of the 3,000.
I keep advocating because I still can. If not me, then who?
To say that this past year has been life-changing is quite an understatement. I certainly appreciate things more than I used to, and I think I have gotten even bolder and more outspoken than I used to be. Sadly, I learned from only being 35 that this disease can strike absolutely anybody.
Once again, I would like to say thank you to all who have prayed for my family, offered advice, offered help, have just been a shoulder, and who have donated to help ease the burden just a little bit. I don't know where I would be without all of you. It is time to kiss my kiddos goodnight so...I will say goodnight. You will definitely hear from me tomorrow.
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