Thursday, March 21, 2013

Phasing out the 'Roids

Today's Starbucks nest. 
Thursday also starts with a “T” meaning that it qualifies as a Tuesday blog post, right? Really, I am trying to get back on the Tuesday/Friday posting wagon because it’s good for me and – I imagine in my head – good for readers to be able to anticipate when posts will be up. [Is it? I’d love to hear from you in the comments.] Today’s blog will serve as a Tuesday/Friday hybrid post: Tuefday.

Ultimately, I didn’t get to writing this week because I am so damn tired and most of my energy has been devoted to laying plans for next treatment steps – with a haircut, pedicure, Hartford dinner date with Craig, and a lady’s movie and lunch date thrown in there (it’s not all medical mayhem). I am tapering off of the 10mg of Prednisone that I’ve been on for months and which has been my little comfort dose. I am now taking it every other day. Today is a no steroid day. I’m trying to replace it with green juices and smoothies and shots of apple cider vinegar and it’s helping a little with the transition. I’m supposed to be doing all of this every day anyway as prescribed by my naturopath, but I’ve fallen off of that wagon lately, too. I’m transitioning better than I have in the past, but it’s still not easy. However, if I can do this, then it opens up more clinical trials, so I will make it happen.

I’m tired for a variety of reasons:

I’m still pushing past that lingering pneumonia. It’s much less, but I’m still coughing and my nose has been running incessantly from a lingering cold. I carry wadded up tissues in my fist like my Nonna used to do. She’d tuck them in her shirtsleeve so they’d always be at hand. It’s helpful because I never know when the faucet will open. 

Nighttime sleep has been a joke – still – even after being home in my own bed. I have bad nightmares and I talk in my sleep a lot so I’ll wake up sitting up in some weird position and will have to basically slap myself to make me realize that the dreams aren’t real. I’ve also been sweating again: both as an effect of the floundering steroid hormone levels and probably the disease itself. Last night I woke up in the middle of a sweat and actually witnessed the sweat beads popping out of my skin, all over, until my legs were slick with salty water and my tank top was misshapen and heavy, a huge ring of visible wetness on it from my neck to my bellybutton. As much as Craig urged me to, I was just too tired to get out of bed, dry off and change, so I fell back to sleep chilled and smelly.

Sweats don't just happen at night either. In fact, I just had one right here. That fireplace next to me suddenly feels like the fires of hell. All of the sudden I'll break into crazy hot flashes and have to strip down to as little clothes as possible. My forehead will bead up and it'll suddenly become hard to breathe. This happens from the hormone up and downs, from the disease, and probably from early menopause, though I'm in full denial surrounding dealing with that. Oh, and P.S. My left boob is still completely numb and aches most all the time. 

The disease is on the rise and my body is in high alert mode. It’s a different tired than when I’m on chemotherapy, which is more drug induced. This is more of a natural tired feeling. It’s actually preferable because when I do fall asleep – which happens best during mid-day naps – I fall asleep quickly and into a very deep sleep. This kind of tired is felt deep in my bones and in every organ. I get to a point each day when that’s. just. all. i’ve. got. No mas. It’s like watching a computer shut down. It goes through each of the open programs and closes them in succession and the screen slowly fades. My body will get tired, then my eyes will get heavy, then my words start to slur. However, with me, no one asks if “I’m sure I’d like to shut down now”. Something greater than me is in control of the power button.

Muscle and bone aches are another prominent feature of the steroid wean. My quads feel like jello and my back muscles are sucked onto the bones as tight as Saran wrap. Without the Prednisone, the awful pain is also revisiting me in my left shoulder blade. The same pain that popped up while I was in San Francisco. The steroid must have been keeping the inflammation surrounding it at bay. It’s one little, very pinpointed spot that has the power to send these electrical flares of pain through my entire body. When it’s really throbbing, which mostly happens in the middle of the night and wakes me up, I feel like I took a bullet there and the pain is reverberating from the impact. I’ve tried Icy Hot on it, I’ve tried massaging it, I’ve tried ice packs, and mostly, like they teach in yoga, I just breathe into that sucker with the utmost focus because it’s all I can do. Oh, and I’m still on the pain patch. It doesn’t touch that kind of pain though. In fact, two Aleve are what seem to be the best for it. They at least take the edge off.

Focus has also faded. Hence, lack of blog posts. It is so much work for me to get out of the house. I am at Starbucks now, but I didn’t leave the house until noon. It’s hard for me to get out of bed, if not for Sammy Dog clicking her little feet by my bedside doing the gotta-pee dance. It’s then hard for me to get out of the shower because it’s so warm and the idea of putting clothes on and making myself presentable is so daunting. Then, I make an elaborate production of morning breakfast and e-mail, Facebook checking. Gotta make an oatmeal with nuts and seeds and fruits, green tea and a lemon water and a green smoothie and get fully caught up on correspondence and take my pills before I go anywhere. Mostly, it’s because I’m too tired to get up off the chair.  Then – shit! – it’s 11:30 a.m.

In order for me to leave the house for some reason I have to prepare like it’s the Apocalypse. It takes me a while to pack everything that I might want to work on, enough things to drink, a snack pack (highly important!), Purell, tissues, as-needed meds, notebooks, red pens, charging cords, sneakers – in case I’ll go for a walk along the trail behind Starbucks, and yoga mat – in case I’ll do a drop-in gentle class at the studio one plaza over. I even do this in my own home. I create a little nest of things I might need all around me. It’s weird and I think a habit I carried over from transplant days when I’d need things at the ready and wouldn’t have the strength to necessarily get to them.

Then, I finally get to Starbucks and they rearranged all the tables in a weird configuration that almost sent me into a panic attack. My usual spot has been replaced with three resting chairs and a little side table. The other tables are right on top of each other and broken into twosomes. What the freak? It’s like my brain is so used to handling the super, super big things in life all the time with relative ease that the easy things can really throw me for a loop. 

Tell me there’s new spots of cancer filling up my lymph nodes and I’ll digest the news no problem. Let's move forward and find a way to fix it. Hide my eos lip gloss egg on me and I can literally break into a panic. I like to blame these tendencies on the steroid taper and insomnia, which I like to blame everything on. A positive is that I’ve been much more receptive to just enjoying things, relaxing, going for impromptu outings and am looking forward to a fun weekend with friends and a dinner party planned. I’m too tired to feel guilty for not being productive and have had a big mind shift lately in realizing that just “chillin” – as my younger brother and sister always call it – is productive too, just in another way. My head and body certainly do need to “chill.”

Family, friends, doctors, and cancer confidants were in agreement with my gut on the biopsy question. I’m going in next Thursday to see the Hartford Hospital surgeon who performed my first two lymph node biopsies from my underarm. He’s very kind and very skilled. I am so fortunate that my Columbia team had no problem with me getting the procedure done locally, completely understanding the extra stresses that eliminates. I’ll be comfortable in familiar territory and close to home. They’ll be able to analyze the tissue directly as well, so it doesn’t really matter who it is cutting it out.

Thursday will be an assessment of the nodes he could go after and potentially could be the biopsy itself if he determines it’s something he could do right there in his office. Otherwise, we’ll set up another appointment in an outpatient facility. I’m hoping for the former, but am up for whatever it takes. What’s another scar and surgical recovery at this point? Treatment is halted until we get these results.  


[Sidebar]: I reworked, sliced and diced my recent blog post "The Semantics of Cancer" to meet submission requirements, and it was published on The Huffington Post. Check it out here. If you like it, please give it a Facebook thumbs up, share, or tweet it out to your personal social media worlds. You can also "like" me as a HuffPo contributor and get updates anytime I'm featured there. Thanks for following! 

14 comments:

  1. Just adding my vote...for the Tuesday/Friday blogs, if it is convenient of course. I always look forward to your excellent writing.
    THanks - West Hartford reader

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  2. I love reading your blog and always look forward to it!! I have been a dedicated reader for over two years when it was first introduced to me by my nursing instructor. We were learning about different cancers and she suggested that we all read your wonderful writing and I have been reading it ever since! I have since graduated and am a RN and I am so inspired by your courage, humor and strength. I look forward to the Tues/Fri posts and when I don't see them I pray that whatever is keeping you from writing passes quickly and that you are doing well!! Best of luck with your upcoming procedure, I will be thinking of you!!

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  3. Look forward to your writing...you are inspiring and I worry very much when we don't hear from you!

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  4. I am a dedicated but new reader. Your posts have helped me immensely as I have navigated my
    own lonely (cancer is always lonely, even when surrounded by people) journey through lymphoma.
    I always look forward to reading and hope that you are doing well. No pressure, but, yes I get nervous
    when we don't hear from you.
    Thanks for doing this!

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  5. 4 year reader here and everyday I check in to read the latest news and when the days pass and theres no 'New Karin' posts I get in a tizzy like your Starbucks table and chairs. I hate the set backs (they make me cry)and LOVE the good news (still I cry). You are an amazing writer and we all love you! Just promise that you will keep writing long after you have kicked cancers ass. xoxo

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  6. I love your blog posts, thursdays or fridays or any other day. Keep'em coming, please (as long as you don't compromise your health).

    My mini-allo went beyond all expectations. I experienced basically no side effects, except fatigue. Today is day 22 and I'm still doing fine. Hope it lasts.

    Big hugs from Anniken (Norway)

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  7. Hi Karin,

    I love your blog posts and have been reading them or the last year and a half as my brother undergoes treatment for the Hodge. He has had various chemos, auto and an allo unrelated transplant,his allo was August last and he has had a clean scan in December, another scan due in a few weeks, Gulp. I love to check in how you are doing and my heart breaks when you dont get the news you were hoping for. You are an amazing inspiration to anyone dealing with this slippery nasty effing disease. I check in nearly every day and am always delighted to see an update. Usually head off to make a cup of tea and check that the coast is clear in the office before settling down to a good read. So from Dublin , Ireland ,much love, and keep posting when you can, any day of the week is good for your readers:)xx

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  8. Hi there Karin,
    I too have been following your journey for the past few months, since I am right now experiencing life about 4 months out from ABVD... So far so good, but trying to treasure every moment. I love your writing and am very grateful to you sharing it with all of us faithful readers. Today I felt compelled to comment b/c the description of your shoulder pain sounds very much like mine that I had, and I got relief from pregabalin (only available under its brand name which you can google - hate to write brand names out on the web- is that weird??). My onc said it either helps a lot or not at all (normally used for shingles or fibromyalgia pain), so it's nice b/c you don't have to take it for many days -maybe a week - to know whether it will work for you. Also, my onc eventually prescribed me low-dose hormone for those awful hot flashes which WILL NOT let a person sleep, and just the fun regular insomnia that comes from one's hormones being jacked up rudely by chemical agents. I really resisted this treatment at first; now I am thrilled with it. Anyhow, both drugs finally allowed me to get some dang SLEEP, so I thought I'd share. You deserve some lovely nights' rests! Sending you lots of love, and beautiful thoughts of spring! Again, thanks for your candor, humor, and just plain wonderful writing.
    -mara

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    Replies
    1. Thanks for sharing, Mara. Helpful tips!

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  9. Karin,
    I am a friend of Craig's from work, and love hearing your 'voice' in your writing!
    Thanks for sharing your life so openly and honestly-
    -Liz

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  10. Hi Karin,
    I like many others look forward to hearing from you. When You do not post I pray it is because you are feeling good and busy living life.
    I have been following you from the beginning. I've mentioned several times you are a gifted writer with incredible insight and the will to preserver. I am sure it may feel like no consolation due to your pain. You are giving many hope, courage & the will to push forward.
    Thinking of you, praying the God of the universe heals you.

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  11. Woah. I'm so humbled and honored hearing all of these stories about how you came across my blog and what it means to you. I love hearing about where everyone is from and learning about your unique journeys and how our paths have crossed in this strange way that is the "blogosphere". I greatly appreciate you sharing your thoughts with me and would love to hear more comments! It makes me feel that going through all the crappy times is for a greater purpose. If I can help just one person by sharing my story then it makes it all worthwhile. I love writing and to hear that people love to read what I write is frosting on the Funfetti cake (my favorite). So thank you for letting me know. It keeps me going.

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  12. Hello Fellow Cancer Warrior!

    My name is Allison and I read your survival blog and it truly has moved me! I wanted to introduce myself and my new t-shirt line to you. I wanted to start a tshirt line because I had a few bad days due to chemotherapy and just wanted to scream out to the world how I felt. One night I had a vision to express myself and others on how we felt about cancer! And my dream came true with www.warriorteeshirts.com. I am doing something special in the beginning of the line and that is limited editions. Part of the proceeds will go to non-profit cancer organizations. I would love for you to take a minute to look at my line and even spread it through out your friends and family. Im also on facebook under Warrior Tee Shirts. Thank you so much and continue to live a beautiful cancer free life!

    Allison Warrior Pickens

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