He caught the Cancer…

It’s crazy to think that it’s been two months since I have published a post. I have written many private posts or drafts, but none have met my mental criteria to be put out there for the world to see. I vowed to myself that today I would put a stop to that.

I suppose this story starts in mid-November. My long-term boyfriend, Ron, had a surgery to remove some swollen lymph nodes on his neck.

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The nodes would be biopsied, and the doctor assured us that it was most likely a benign type of tumor. Optimism ensued.

On the weekend before his 42nd birthday, we celebrated alone together at the Cheesecake Factory in downtown Seattle. We each had our favorite, the steak diane, with several Blue Moon Ale’s and a lemoncello cream torte for dessert. I remember how Ron wore his grey beanie instead of a ball-cap. For some reason all of these details stand out to me as if they are important, when they aren’t. I think I have committed them to memory because I clearly remember Ron’s smile as the glow of his candle hit his face, right before he blew it out. I remember that moment and thinking that he seemed happy.

The day after his birthday, he met with his doctor to get his biopsy results and was diagnosed with follicular B-cell non-hodgkin’s lymphoma.

I was at work when he told me the news via text. I felt like I was in a time warp while the rest of the world kept on going. It seemed impossible to keep performing day to day tasks while my world was seemingly hanging on by a thread. Memories of my parents came to me over and over again. A bedside commode next to a frail body. Pill bottles covering an entire table. Tar black coffee to be my only meal as I sat in the hospital for an entire afternoon.

I really just wanted to break down, but that seems entirely selfish. Sure, I have my own part in this. I have to play the role of caregiver, once again. I have to helplessly watch my loved ones suffer. I don’t want to be one of those people that makes it about them, though. I am not the one that has to go through chemo.

After his diagnosis, Ron had to have a PET/CT scan to determine where the Cancer had spread throughout his body. The doctor told us at the time that he probably had stage 1 or 2, and might not even need chemo. Optimism ensued.

Before the scan he had to eat a low-carb diet. I was in HEAVEN because in my efforts to fit into skinny jeans I have researched diets galore and finally had someone to bore to death with my findings. For three days we both ate a Ketogenic diet, and after his scan we enthusiastically ate a full breakfast of biscuits and gravy, fresh fruit and juice from the hospital cafeteria. Hospital food had never tasted so good.

Yesterday Ron met with his oncologist and was told that he has stage 3A lymphoma. 

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People say to remain optimistic but if you expect the worst you will never be disappointed.

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Okay, it’s not that I expect the worst. I mean, I don’t think we should start picking out caskets or anything. The new diagnosis was simply a slap in the face considering we have been told every step of the way that it was likely a better outcome. It seems like trying to remain optimistic is a jinx.

The next step is a bone marrow biopsy to see if the Cancer has spread there, and if it has he will become a stage 4. The doctor said that she doesn’t think this is the case because he has no symptoms and his blood work is great. I am not going to be fooled into optimism this time, though. Fool me once, shame on you…

I keep wanting to throw a pity party. Every time that I see him tearing up. Every time that I think about going through the Cancer rodeo again. I keep wondering why this is happening again, but I don’t think I will ever have these answers.

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Regardless of this staging I am hopeful about the prognosis. I know in my heart that we have many years left together.

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The burning.

Five years ago, I was sitting at the kitchen table in the same run-down apartment that I live in now, and I realized that my feet were burning. Careful inspection revealed no burn, and no home remedy seemed to help. My skin simply burned in weird waves like a sunburn. It didn’t take long for the sensation to move to my legs, arms, face and back. The burning would float around, coming and going like the tides. I was stumped as to why it happened or why some days it was like the plague was upon me and others it was hardly noticeable.

I finally went to my primary doctor when I was in an unbearable flare. I remember telling him, “It’s like I’m being dipped in acid! I can’t stand it“. Sometimes I would touch things with my arm or leg and feel a burning sensation in its wake. Sometimes I would touch something and itch in that spot. My doctor said it was Neuropathy and referred me to a neurologist.

I waited for 3 months to get in to that specialist. On appointment day, I arrived 5 minutes early with a list in hand. I didn’t want a single thing to get missed. I waited for 45 minutes in the exam room for the doctor to come in. I remember it all so clearly. I remember his suit that didn’t fit, his white hair and his indifferent gaze. I remember starting to tell him about my symptoms, but he cut me off and started a few physical tests on me. I remember one of them was running a paperclip down my leg. He asked me if I could feel it, and I said yes and added that it left a wake of fire behind it. He raised his eyebrows and nodded as if I were telling tales. Then he said, “Well, it’s not M.S.” in a dismissive tone.

He wrote me a prescription and quickly left. The whole appointment was less than 10 minutes long. I remember getting up and watching him walk away down the hallway. I stared down at my list and realized that I had only touched on 1/4 of it. I was so angry.

An older, wiser self wishes that she could go back in time and tell Mr. Big-Shot Specialist a thing or two. I wish that I could say I never said anything about M.S., you twat. I wish I could remind him that the only way to diagnose M.S. anyway is with a series of tests like MRI and spinal tap, and he hadn’t ordered those. I wish I could tell him that when he dismissed me as being a liar it deterred me from getting help for nearly three years and encouraged me to self medicate with alcohol. Prick.

Today, I am no closer to getting answers or relief. In fact, new symptoms were one of the things that increased my drinking and brought things to a tipping point. The doctors are very quick to offer medications, but not so quick to get to the bottom of why it’s happening.

Using alcohol to self medicate was a dumb decision, but it seemed necessary when prescription medication had failed. I tried the medication the Big-Shot Specialist gave me, but it didn’t help my symptoms and had a lot of side effects. Other medications that I tried before that induced panic attacks. It didn’t seem worth it to feel worse in an effort to feel better, even if it was temporary.

After many negative experiences with doctors, the very idea of going again makes me instantly angry and defensive. And yet, I know that I am writing this because I am opening myself up to the idea of going again. I know that I don’t really have a choice if I want to stay sober. I have a neurology appointment coming up this month, and I’m not feeling very open to whatever treatment they will recommend. I don’t know what other options I have, though.

Sometimes, giving up alcohol is the easy part. The hard part is afterwards, when you’re thrown into the UFC octagon ring called Life with nothing but your wits and you’re opponent is a decade’s worth of problems. All you can do is hope to come out alive.

Okay, that’s a bit dramatic, but still fitting. The best reassurance that I have received lately was from my boyfriend, who said: “Well, you’ve made it this long with your health issues and you didn’t die, so… you will probably be okay”. Not dying is always promising. I’ll take it.