Tuesday, 27 January 2015

My Tantrum with God

It was during my week of online silence. Emotions were high already. I chose to read a long article about death and dying that a friend had posted on facebook. Story after story of dying and dying... and eventually death.

Without a miracle from God, this is my reality.

But God, why me? For what reason have you chosen this path for me? How is this even possible? I had checked. I went to the doctor. I had so much help with breastfeeding. I had imaging. I did all I could. How dare you God! 

I literally had my fists clenched and was shaking them at him.

And the article continued. More dying. More death. More decisions to make about how to die.

We're all going to have to make them or they will be made for us. And if our wishes haven't been discussed, your family will be making decisions that might not be in accordance with your desires.

If your situation is treatable, you have lots of options. Believe me, I've treated patients who were in dire situations and have later returned completely healthy. It's amazing to see.

You still have all of those options if your situation isn't as positive. And this is where the situation can get messier. Do you want CPR, medications for your heart, an IV, to be tube fed, etc.? If your brain is "dead" but your body is "alive" how do you want to "live?" If you know that you're decompensating and death is coming, where would you prefer to die... the hospital, a hospice, home, somewhere else? Do you want just pain and comfort medications? Do you want family or friends there? The list goes on and on.

And as I read the article that talked on and on about dying and death, I started to panic. It was too much for me. My breathing rate increased and I lost control. I was alone in bed having a panic attack.

Get help, I gasped.

I texted Xhevat. It didn't work. Repeat. It didn't work. I hate my phone & service provider!

"How dare you God!" I cried out. I'm even asking for help and it's not working.

Then came anger toward God and calling Xhevat on his phone... but my calls would not go through. Couldn't he hear me crying?

My breath was ragged, my emotions were on edge, my body was rigid, my voice was hoarse and I was not in control. I tried to surrender but couldn't. 

Eventually Xhevat heard me. He had fallen asleep in our son's room right next door. He came into our room in a panic hearing my cries and brought me comfort (and meds). He helped calm my soul.

For the first few minutes I couldn't talk about the article. I just kept on repeating "I'm dying, I'm dying, I don't want to die." And as my thoughts became clearer, my preferences around my dying and death became clearer and I could actually say the words out loud.

Xhevat heard my wishes. My fight was over.

I don't know when or how death will come for me. More than likely, it will come. My family will be going through enough at that time that I can clarify a few of my wishes around dying, death & my funeral. You can do the same. 

Figure it out. You don't have to have a terminal illness or be "old" to talk through some of these decisions. If you remain silent, it doesn't mean it will or won't happen. It means that someone else might have to make the decision for you.

A nurse at work was performing CPR and cracking her patient's ribs as she tried in futility to save her patient's broken heart. This colleague still weeps that she was inflicting pain as the last person who was seen by this patient.

You can choose.


http://www.newyorker.com/magazine/2010/08/02/letting-go-2

Copy & paste the above website to get to the article

Thursday, 22 January 2015

Weightlifting & A Turkey

If you've seen my high school yearbook, I jokingly said that I was going to become an Olympic weight lifter. And this was because in Gym class I could barely bench press the bar alone (with no additional weights). That's how "strong" I was then.

Oh I wish I had those muscles now.

My brain and muscles lack confidence, coordination, motivation and strength (and they still do). I'd have to give myself pep talks to get up off the floor or couch. One time when entering the house, the step was a little taller than I could handle and my knee, just like hydraulics losing power, gently gave out. I just sat there for a while until my mom came to check on me. I was fine (and it definitely wasn't a fall). I just sort of slowly was lowered to my knees.

Lack of muscle strength is frustrating and intriguing. I know that steroids have played a huge part in this. It could also be the "floaters" doing their thing, brain radiation, and/or disease process of cancer in my body. And again, this could be temporary or permanent or just part of this degenerative disease process. Our bodies are definitely complex and so intricately created!

Interestingly as well, my thigh muscles feel like they're not attached to my bone. A tenderly cooked turkey (complete with a gobbler chin) with the meat falling off the bone. That's what I feel like.

I want to regain my strength... even if it's only the bar.

Trying to regain strength

Wednesday, 14 January 2015

Grace

I've been finding myself a little short on grace lately. I know I have lots of justifiable reasons why I could be less filled with grace -- my brain metastases, cancer in general, my steroids, lack of sleep, a toddler, etc. -- but as I'm able I don't want to use those simply as excuses to justify my sharp tongue and lack of filter.

It's January -- a very difficult month for many. The merriness of Christmas and New Years have been exchanged for paying off bills and greyer weather. The highs of celebrations and family have been concluded and loneliness and the whirlwind starts to set in.

Can we try to change that? Can I try and change that? Extend a little grace -- both for yourself and others. A smile and genuine interest in someone else's life might change the paths of your futures. A coffee might show love, concern & caring for the value and dignity of the other. And a little grace for yourself might acknowledge just how hard this journey can be and that we don't have to have it all together at every moment.

Today I'm thankful for grace extended to me and for the grace I've seen made visible to others. Continue on Christmas and grace into the hearts and crevasses of January!

P.S. It's been another rough week for me. Side effects of everything, a great palliative care team, tough decisions -- but made, a tantrum with God, my first panic attack. Family hurts and concerns here and in Kosova.

Grace, Krista, grace. You'll be ok. Do something for someone else. You're not the only one in hurting & in need. Let others in and let them do for you as well. You're loved & not alone.

My Haitian Nativity Set -- may Christmas continue

Friday, 9 January 2015

Hair

It's just hair, right?

Not really. 

It's been a part of my personality, my identity, my looks, etc. I can fake that I'm not sick with hair. I look more sickly when I don't have it. I am looked at differently when I don't have hair -- pity, sadness, compassion, concern.

"At least you still have your smile." Or "At least your head is shaped nicely." Or "At least hats look good on you." Ok... but I've still experienced a loss. And it still hurts incredibly.

So much is going on. Radiation done. Effects of radiation ongoing. Steroids. Family. Rest needed. Putting together plans for the future. Working through thoughts. Our family has been hit hard. Sometimes I wonder if it's the cancer in my brain or if anybody would be left spinning with everything going on.

A chemo nurse passed me in the hall on Wednesday. She knows me and asked me twice if I was ok and if someone was there with me. I was in an overwhelmed daze.

Struggling to keep it somewhat together.

P.S. This all happened on Wednesday after finishing brain radiation, an appointment, grocery shopping to Costco and Superstore, a fantastic dinner, some pictures that I've been wanting to take since the beginning of this journey and celebratory DQ Blizzards.

Our Family
 
With hair and the precious gift of a blanket covered in verses & prayers. Thank you.
 
About 15 minutes later. It was time. Most of my hair fell out in handfuls by the follicle. This is the fourth time that I've lost my hair in less than two years.
 
What was left.

10 pairs of socks for 10 days of Radiation

Some of the side effects of my steroids (but they're very much needed for my irritated brain & brain swelling right now)

Wednesday, 7 January 2015

Another Big Day

Today is yet another big day for me. I will complete my 10 days of whole brain radiation. This will complete my lifetime dose of whole brain radiation. No more. And its a good thing because my face has puffed up enough so that my eye chub & cheeks are starting to roll out of my eye whole slats on my mask.

All along I've said I don't prefer steroids except for my brain swelling (and appetite). It's a kind of catabolic steroid that eats muscles and energy and makes you feel jittery, anxious, and you lose you your emotional filter. If you're on it for long enough or a high enough dose, it even redistributes your fat giving you chubby chipmunk cheeks, a belly that looks like you're pregnant, and a nice little fat pad on the top of your back. My weight has varied 25lbs this year so far and although I might not look it (fat redistribution) currently I am one of the lowest weights in my lifetime and I'm not comfortable going any lower than I am... plus, my doctor told me I should eat anything and everything. :-) Christmas and all its food & goodies have been welcome to me!

So... Jittery, anxious, weak, fatigue, lack of sleep, lacking a filter (could be steroids, could be brain mets, could be sin).

I shaved my head tonight. It had already lost a bunch and I could comb my fingers through my hair and lose handfuls - my fourth time in less than two yearsAnd now I wait and rest & recover. And continue to enjoy all the yummy food. Radiation side effects have started. Fatigue and the lack of will do to things is present.  And physically doing things requires personal pep talks sometimes. I don't see/feel any signs of my brain rotting as yet. But I can feel when my brain mets and floaters start playing with my body... My head starts to pound, the pressure in my head shoots up, my right ankle loses all control up to the knee, my foot drops (and I still don't have all my sensation/proprioception to my left thigh and down so it's a bit of a challenge). I may or may not also need to throw up. So I either sit down & wait it out or I grab an arm and hobble to the bathroom trying not to pull or twist my ankle that I can't feel. About five minutes later, it's all done and I continue on with life as usual. 

I just want a pause from changes... And hopefully that starts today. I'll start decreasing steroids in a bit and in a few weeks, I'll get right back into chemo (the same oral ones I was on before).

I'm being closely monitored, love my healthcare team, and am thankful for today. And I'm struggling.

Radiation: what I saw

Us on Christmas

Celebrating radiation completion

Thursday, 1 January 2015

January 1, 2015

We've made it to 2015! To some it might mean a fresh start, to others an end to a great year, to others just another day or year.

I'm not sure how to take it.

I've had some ups and downs this week. It has been so good to have family here and we are celebrating. They've seen me flying high on steroids and cooking meals for ten (with their help, of course). They've also seen me green and puking in the toilet unable to walk independently as my ankle sometimes loses all control and sensation for a few minutes at a time. My cancer is certainly playing in my brain at times and it's a little scary to experience it happening.

Six doses of whole brain radiation have been completed. I've had five appointments so far this week... three more to go tomorrow. And then I think only four more next week. These are busy days and it is so good to not have to worry about transportation or babysitting or personally being cared for with my family here. I just put out the time of the appointment/request and they "fight" over who gets to take me. My hair will fall out in the next week or two. And my steroids will continue for the next few weeks to months after radiation.

So what does 2015 bring for me? I don't know. 

Healing would be fantastic! Medically (and realistically) it's unlikely but I will still stubbornly ask God for it. A vacation with family in February (right at the time when my side effects could be the worst... yup, that's typical me too). Beyond that, I'm not planning much... no huge new year's resolutions, no goal setting (other than potty training Matias), just trying to be fully present in today and taking what comes.

Happy New Years Friends!

Day Six of Whole Brain Radiation: getting lined up (eye holes cut)


My New "Business" Cards: it sure beats writing out the website

Monday, 29 December 2014

And Yet Still Celebrating...

Yesterday my sister and her family drove in from the Interior and we got to start Christmas celebrations all over again. Turkey, stuffing, mashed potatoes, corn, spinach arborio salad, trifle, cheesecake... yummy! Matias chose not to eat a single bite of dinner. My nephew recited the whole Christmas story by memory. Presents were opened and we ended the evening with Dance Kids on Wii (started off by my parents "wiggles"). We had a downright hilarious evening. It is so good to have all of my family here.

Today was back to radiation and a doctor's appointment. Between everything, I have eight appointments this week and lots of babysitters and chauffeurs for help. It's part-time job.

I also get to just chill, love on and be loved on by my family. Thoughts of this potentially being my last Christmas still hover in my thoughts but if this is my last Christmas, I'm going to go out with a bang and lots of celebrations!

Tonight was Albanian food! Flija, sallat, ajvar, dhe speca e pjekur (a layered crepe-like savoury dish, cucumber, tomato & onion salad, spicy roasted pepper paste and roasted peppers). Yummy! My sister helped and is now an expert at cooking flija... and she hadn't every eaten it before!

Enjoying family & feeling very blessed.

Flija

Family