Thursday, October 14, 2010

Roller coaster

Lately, it's been hard to tell if my wildly fluctuating emotional state is because of the trillion drugs I'm on, the stress of all of this or because I'm actually a fucking nut. Up and down. High and low. Flying on hope and love or drowning in sadness and frustration. Sometimes, I start the day agitated, like actually agitated, as in all of the molecules of my body are jiving and bumping against each other in competition to be the most annoying, throwing me into irrational irritation with every move P makes (have I mentioned he's a bloody saint?), with even myself. By the end of the day, I'm serene and bubbling with love for my husband and joy for life and just want to melt into a puddle of thankfulness and gooey love-dovey goop. Some days it goes the other way.

Yesterday, I lost my proverbial marbles. Gone. lostmyshit. It was like everything just stacked on my shoulders at once and it was all I could do to stay standing (which I didn't do, I dissolved into a puddle of times). Nothing catastrophic happened. On the contrary, the last few days have been filled with stellar news, but there was enough, just enough, that I just couldn't fucking take it. It was about control. No secret THAT issue is...well, an issue. Blogged about it extensively before. But yesterday, all I wanted was some fucking control and a FUCKING BREAK. It started with being frustrated that my ATC appointment was two hours earlier than usual. I like sleeping. Sleeping is fucking hard. I don't like things that make me change my delicate sleep pattern. In clinic the APN said that the neuropathy in my hands and feet that has been annoying the everyloving shit out of me for the last two weeks may be permanent. Or not. They don't know. (yeah, yeah positive though "MIGHT BE". still really hard to hear).  But it can be permanent especially in patients who have had the drugs I've had. There are THOUSANDS of patients, survivors, living with this (honestly) minor complication, but these are my hands and feet. My life. Yoga, music. You need your hands and feet to function comfortable. Let's leave this at: I got really FUCKED UP about the idea of living with this.  Really fucked up. My muscles have all melted away (this is not hyperbole) from the steroids. I mentioned this before, but now it's worse and I'm having a much harder time coping with this drastic change in my body than I did with my hair. I'm unable to stand up from crouching without considerable effort. I cannot walk up every other step, hell, I can't walk up BIG stairs. I can wrap my hands around my thigh and touch fingers. My knees hurt down to the bone. But my stupid cheeks are puffy (steroids, shrug). It's devastating and adding even the REMOTE thought of permanent tingling and burning to this makes my chest tighten in sadness and anger. I'm sure I'll come to terms with this. Muscle is meant to be rebuilt, nerves heal, but this, THIS is literally breaking my heart and forcing me to completely re-evaluate my body image. What a great thing to have to do while uh...completely re-evaluating your body image anyway.

Then, after talking to endocrine (I have to call them every time my steroid gets adjusted because it messes with my insulin dose), it was suggested that I add a small dose (read: ANOTHER INJECTION) if I have a carb snack between meals just to keep my sugars more even. So stupid to get jacked about, right? I know. This is keeping me healthy. But there was something in losing the control (see a theme?) of popping a few crackers if I want them instead of opting for something without a carb (now I have to think about my snacking- have I mentioned I'm on t-rex steroids?) that irked me even more.

After clinic, I planned to go to an exercise class at the Place of Wellness (Yoga/Nia Body Energizer, it's called) so I hauled myself from clinic, rushed across the skybridge (the Place of Wellness is in another building about a half mile away via bridge- there are shuttles) and thought I made it in time to register the required 10 minutes before.  EXCEPT, get this, EXCEPT: All the afternoon classes were canceled. For no reason other than there was no staff to sit at the front desk. Canceled without notice. Well, fuck.

SO now, P is back at the apartment working remotely so we can pay our bills, having just spent a few hours taking a class so that he can care for my port site, I'm stuck at the other clinic, we're waiting on a prescription refill back on the ATC floor, traffic is a mess so P can't come get me and I'M PISSED. I huffed my way back across the skybridge (refusing to take the shuttle because now I'm not going to an exercise class, and I'm gonna WORK MY LEGS AND LUNGS DAMMIT) and plop myself in a chair with my book to wait for my prescription. And stewed. And stewed. And stewed. In self-pity, exhaustion and anger. All I could think about was how badly I wanted to say 'fuck this' and walk away from everything, going back to my old life, my old body (which was STRONG and didn't HURT, not boney, flabby and achy) and forget any of this ever happened. How I wanted a break, even just for an hour, from this. That I was hoping to escape in that class but then had no control over it being canceled.

In a little while, P came and got me, the prescription was picked up and we made our way back to the apartment. There? I locked myself in our bedroom and sobbed. SOBBED. Settled. SOBBED. And then sat up and took a DEEP FUCKING BREATH. No, I threw a water bottle against the wall, then I took a DEEP FUCKING BREATH. A few days ago I went to an Aromatherapy class where we were given vials of essential oils (like, REALLY NICE essential oils) to help with side effects. I chose a (VERY NICE) lavender oil. SO, I grabbed that bottle, wiffed and closed my eyes, cried some more, and tried to reset my gears. Three hours I sat curled up in there. P was very patient with the whole thing, and I felt terrible because we have such precious time together.  I painted my toe nails (I can control that!). I wrote some letters. I watched an old SNL (yeah, and cried through a lot of this). Then I emerged, curled into a chair with P (cried) and felt better. Calm. Reset. P and I had a lovely dinner together and I ended the day serene, next to my husband, where I belong. Not wallowing in self pity with a bottle of oil. And nail polish.

Today?  Top of the roller coaster. Great. Fucking. Day. It's like yesterday never happened (oh, but it did). Woke up so energized that I stripped the bed and did laundry (hilarious, I assure you), got gussied up for clinic, and felt glorious. Luminous. Went to Starbucks for one of those horrible frappachino things (if you saw my FB post, yes some college kid literally freaked when he saw my scarfed/masked self, moron) and we made our way up to clinic. P took and passed the test to change my dressing on my port (seriously, I CAN NOT imagine having to do that- I would cry every time.  I don't know how my Mom and P do it). Oh HEY, so then we saw Dr. De Lima who basically said that I'm doing 'remarkably well'. My numbers are fantastic, my steroids are being cut again (which means that the GVHD is completely under control), the CMV virus that I tested positive for (I think I mentioned that) is gone, yeah GONE. Starting next week I only have to come to clinic twice a week. They're incredibly impressed with my progress (I will NEVER get sick of hearing 'NO EVIDENCE OF DISEASE') and all of this I got share with my husband. Standing my be side. Hugging me. More than words.

This is a roller coaster. It's trying. It's FUCKING HARD and there is NO HANDBOOK. Having a husband that is patient and kind and loving is a blessing (is there a stronger word than that?) that I can't even put into words. Having days that test us, that test me and my spirit which of course means us and OUR spirits, are like having days that add thousands of years to our marriage. To our lives. It feels like we've lived so long. Been together so long, it's hard to believe that all of this is going to give us even more years. How lucky are we? How lucky are we to have families and friends who are carrying us through this? To have strangers reaching out with love and support? It makes those low days like yesterday easier to bear. To wake up the next day, take a breath, remember what's important and say "Ok. Let's try this again. GO".


  1. Thanks for posting. I can relate (just a little, I am not trying to compare our situations) to the lack of control when I experienced medical problems. It was the worst thing for me to deal with, and I am actually still going to counseling for it. I still have anxiety from it. It sucks.

  2. At least you are on a Roller coaster of love" too! (not trying to say that your love with P is like a roller coaster, just trying to share the song that has been stuck in my head since I read this post) love you!

  3. Sweet Laura - Sending you GIANT Aunt Lizzie hugs.

  4. love love love love coming at you. you are strong and amazing and there is no shame in FREAKING OUT sometimes. we all do it. thank you for being brave enough to write about it.

    <3, Dolly

  5. God bless you, Laura. Believe me, you are way stronger than you think. We get different trials in life, and we cope, and sometimes it changes our outlook but mostly makes us look inward further to see who it is we really are and what it is we are made of. There is no right or wrong way to feel about how we are feeling. Sometimes you just have to let it out and that's the way we get through it. You are getting through it. There's a saying from the Prophet that : the deeper sorrow is carved into your being, the more joy you can contain. This is so will someday soon fill your soul with much joy!

  6. If you take your medical journey alone, there's a ticket to ride the coaster. Steroids under any condition, same! Put the two together?..... well, its no WONDER. Sending strength and patience!




  7. Hey Laura,
    Sending lots of hugs from home. When you feel your at the end of your rope --- tie a knot -- and HANG ON!!!! Lots of love.

  8. The patients I worry about at work are the ones who never melt down, who waste so much energy suppressing/denying how they feel. What you are describing is actually a sign of someone who is pretty healthy emotionally and confident enough in the love of those around them to be open about what they are feeling. Save your energy for the things that count!

  9. clarification on bicycle story: the bigger teaching is not just that the mountain looks too big, but that ALL journeys, ALL mountains lead to the same place, and it ain't savasana, and when you look at the end you miss where you are....

    so we're invited to notice, and enjoy, the moment NOW. the front tire, the breath, the full experience. and then again. and then again.....