Interesting Changes in My Biopsies

In preparation for my appointment with Johns Hopkins, Superman made a quick reference page with biopsy information, which included the dates collected, biopsy location and summary of findings. (He's pretty awesome for doing that!)

I'm making this interesting note to share in case anyone out there has some insight into this.

The first few biopsies in the summer of 2011 (symptoms first began in March of 2011) showed a high amount of eosinophils and only a few neutrophils. By summer of 2012, my biopsies showed a high concentration of neutrophils and no mention of eosinophils! What the heck?

I should also note that the breakout the summer of 2011 was severe but not as severe as the breakout the summer of 2012.

Does anyone think this is strange? Is it an indication of disease progression?

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This is a Beast!

Just when I think I've got this thing down (meaning managing my symptoms and knowing how to prevent a breakout/flare-up), it knocks me down as if to say, "Stupid woman! I'm in control, not you."

Yesterday was Saturday. I was feeling pretty good when I woke up--just a bit tired. We both were feeling pretty good, so Superman and I took the opportunity to go introduce ourselves to some new neighbors. (Having realized the week before during our emergency just how alone we are now that our few friends have moved, we both decided we need to put ourselves out there and start making new friends when we're feeling good.) An hours visit, standing the whole time, a quick trip to the grocery store and minor cleaning around the house with frequent breaks, I thought I was handling it quite well. I mean, the breaks were supposed to help, right? So, then we started working on dinner.

Who knows when I was pushed over the edge. 
The "delayed" response aspect of my annoying disease makes it darn near impossible to know if it was that first hour of visiting or the last time I walked the dog at night that pushed me over the edge. By 10:30 p.m. that night, my feet were throbbing. I was pretty sure my feet would be a problem on Sunday, but I kind of thought that would be it. In the middle of the night, I awoke in pain and itching many times until some time around 4 a.m. it became so bad that I couldn't sleep. I was crying a bit. I went to the bathroom where I could check out my skin. I was certain with the level of pain and amount of scratching that I'd be covered in hives. There were a few but non that were actually visible. I could feel them, though. But, most people would look at me and probably not even notice them.

Describing the pain. 
It's hard, especially knowing there are buzz words that could lean one down the wrong path of diagnosis. I'm afraid to say the wrong thing.

But, here goes:
I felt swollen all over but especially on my hands, arms, legs and feet. It was giving me some feelings of pressure. A much deeper pain felt more like a simmering flame--not enough to boil (or erupt my skin), but simmering enough to know the stove was on. Both pains were all over my body. I had additional, more intense pains where I felt my worst hives.

Quality of Life

How had I been managing my symptoms (or so I thought)? My daily routine was pretty much doing nothing but sitting at my desk working and walking the dog 3-4 times per day. Anything more than that, apparently, sends me into a breakout. Not much quality in that, is there?

We Are a Sad Country Song

Superman: It's rare for someone his age and otherwise healthy to have his particular type of cancer.
Zack, the dog: He has glaucoma and is blind in both eyes, has arthritis, and now has a cancerous tumor. He starts chemo and radiation next week.
Me: I have a rare disease, Urticarial Vasculitis or Sweet's Syndrome.

That's the recipe for a sad country song! Too bad George Jones is gone. He'd have been perfect for writing our song.

You don't have to know any more that this to know what we are praying for. Then, I heard this statement today that made me think (and cower in guilt). I must keep this in mind and in perspective.

"Don't let the answered prayer become more important than the one who answered them."

Total Memory Failure

It's 7 p.m. here. Just 10 minutes ago, I walked by my desk where I've been sitting all day and spy my pill sorter. It occurred to me that I haven't take a single pill today. That would be good news if I were a normal, healthy person. What the heck! How on earth can I miss them...all? I didn't take my morning meds, my mid-morning meds, or my lunchtime meds. The only ones left are my bedtime meds.

Does this ever happen to anyone else? Do you have complete memory lapses of things that are totally routine and necessary?

6 of 1 or 1/2 a Dozen of the Other

After 2 frightening episodes with Superman cringing in pain, clutching his chest and neck, turning red and clinching his jaw, I insisted he call his oncology nurse. "No, this is not normal. Go to the nearest ER." What? Where? I only know how to get to Bethesda (not the closest ER)! Imagining myself trying to navigate to an unknown location and getting lost while Superman moans in pain and not knowing what the problem might be, I quickly decided 911 would be best.

The ambulance and fire truck rolled into our neighborhood and whisked my Superman away. I followed shortly after locking the house and getting the other cancer patient, our old, blind, arthritic dog, settled and ready for us to be gone all day. (Poor doggie!)

All the EKGs and lab tests and imaging showed no signs of a heart attack. That was a relief, but it wasn't much of one. What's going? Why is he still having these episodes? Make it stop!

He was totally conscious the entire time and talking. We talked and suspected it was a reaction to a chemo drug. He had just started chemo on Tuesday and this day, Thursday, was supposed to get the needle removed until his next treatment (treatments are every two weeks for 48 hours via a continuous pump). He was transferred to our regular hospital in Bethesda where he had to stay overnight. It was the next morning before our suspicions were confirmed--it was a reaction to chemo.

During the waiting, we were scared. We went to some dark places. In truth, the questions and fears we shared will need to be addressed in a less stressful environment and situation. They are real and practical with a lot of 'What ifs…'.

One thing I must make clear now: I call him Superman not because of any physical strengths or aptitudes. He is Superman because of him--his love, his kindness, his thoughtfulness, his truthfulness, his spiritualness, his sentimentality, his odd aversion to Nutella, his perfect shirt-folding, his "Bulldog" reactions, his love of reading online about how much time we waste online--all these things make him Superman. Mostly, it was how I first described him. "I met this guy who's super sweet, super neat, super smart… He even cleaned my garage! He's super…man!

"No one really understands unless they've had cancer." 

Yes. I don't disagree. I've never had cancer. How could I really know?

I've been saying for months that talking to doctors is good, but talking to other patients is important. Some groups, I've heard, just become "woe is me" platforms. Oh, I've had those moments too. But, the good groups, the other patients redirect you. They even ask questions about your medications, offering advice on what worked and what didn't. These groups have been helpful. I told Superman, 'Listen to or read all replies. Put on the back burners all those that are extremes (on the bad and great ends of the spectrum) and focus on those that land around the middle. You'll relate the most to those. And, if you have that bizarre reaction or feeling, those extremes you put on the back burners can be moved forward and delved into more.' That's what I do. 

Getting back on track, that statement made me think.

How much do cancer patients and rare disease patients have in common? 

There are certainly those who have both or are both… those who have a rare cancer.

We've gone back and forth with each other. "It's easier knowing what it is and that it can be treated," he would say. Really? Is cancer really the better evil here? In agreement, I replied, "I guess the enemy you know is better than the enemy you don't." Then, I thought, 'Cancer is scary. Cancer kills.' So, then I argue, "My rare disease, whatever it finally is called (Sweet's Syndrome or Urticarial Vasculitis), doesn't kill… that I know of." There it is! The scourge of rare disease... not knowing enough because enough isn't known.

That's when the little I do know came back to me. Like, 20% of those with Sweet's have or develop some underlying malignancy. And, urticarial vasculitis can develop into Lupus.

I don't think one is better than the other.

Cancersurvivors.org has a list of questions cancer patients ask or should discuss with their therapist. I've listed them below. I have asked/thought about all of these at some point in the last 2 years. I've highlighted a few of my own comments on these questions.

Questions from Cancersurvivors.org. 

• How do I share my diagnosis of cancer with my family?
  Diagnosis... some of us with rare diseases pray just for that... a diagnosis, a name to call this Hell we are in. But, plenty of cancers aren't discovered for years either.
• What resources exist in this community for people with my disease?
  For financial help? For information about my illness? For legal help? For counseling help?
  It was the lack of resources that motivated Michelle and I to start sweetssyndromeinfo.com. 
• What can I do about all of these feelings and mood changes I am experiencing?
  Is it normal to feel these things? Angry? Sad? Scared? Overburdened? Picked on?
• How can I deal with the things that are happening to my body?
  The way I look? My lack of energy? How I feel about myself?
• How can I get myself and my family to look at and plan for the possibility of death?
  What can I do if they deny it or are uncomfortable when I bring the subject up?
  Oh, yes. I wondered a few times if I was or would die from this.
• How do I develop the quality of life I want right now and still take care of my responsibilities to family and friends?
  I'm still trying to figure this one out.
• Why do I sometimes feel guilty about having cancer?
  Is it normal to think sometimes that I'm being punished by God for past sins? Or, that I caused myself to have cancer?
  If it is a punishment for something I've done, it's definitely torture!
• I sometimes feel crazy and/or angry with my family and friends. Is this normal?
  What can I do about this?
  Angry. No. Jealous. Yes.
• How can I relax and let my body do its job of curing me when there are so many stressful things happening to me?
• How can I get my spouse or lover to talk with me about what is happening and how s/he feels about my illness?
  How do I handle their being angry at me for being sick?
• What are some of the psychological gains or payoffs I might be getting from having cancer? How do I sometimes use having cancer as a way to manipulate others into doing or giving me what I want?
  What is the cost to me and my relationships when I do this?
• What can I do when I feel angry or upset with my doctor?
• What can I do if I feel I'm being treated unfairly by the hospital, insurance company, doctor, or therapist?
• How can I deal with friends who try to persuade me to look into different cancer cures, diets, religions, or therapies?

The only difference I see is perception. 

When people mention cancer, everyone understands to some extent. Everyone knows it's serious. Everyone knows it's scary. We just don't don't fully understand how serious or how scary. There are support groups where everyone understands, even if they have different types of cancers and treatments.

When someone like me with a rare disease says, "I have ____________." No one knows what we are talking about. The questions flash across their foreheads as I look my friends, family and strangers especially. "Is it contagious?" That's when we get to play educator yet again. It can be a blessing and a curse to get the opportunity to share with someone new what your disease is. It's a blessing because we are promoting awareness... one more person hearing about it is one more person who might pass it on. But, the curse is that we get the looks, the "Please don't share your sob story with me." Or, "Are you seriously bragging to me that you have a rare disease?" There's far less compassion and far less understanding for those with rare diseases.

So, I repeat the statement with an edit.

"No one really understands unless they have a rare disease." 

That being said, we're all in it together. So much of it is the same emotionally and psychologically. 

Let's Just Sleep Until This is All Over!

This has been our cry for weeks now!

Ah, sleep! We watch our aging dog sleep and wish we could all three curl up in a big fluffy bed and not have to worry about such nonsense and interruptions as restroom breaks, medications, appointments, work, etc. I wish we could sleep through the pain and treatments and awaken after it's done. Then, we would be healthy and happy and able to get on with a real life.

Sweet's Syndrome Awareness

Find information on diagnosis, treatment and patient tools.