Thursday, 16 April 2015

A Post From Dad & Me

It looked like things were going well postoperatively for dad. He could swallow again which was a welcome outcome. Unfortunately something changed overnight on Monday and he's back not being able to swallow.

This is scary for me. I'm used to my dad being the strong, healthy one. I'm used to him taking care of me -- driving me to appointments, giving me additional support & wisdom, coming into my "bedroom" many times a day asking me how I'm doing, making me coffee. I haven't seen him for over a week (because he's in the hospital and of germs) and I miss him a lot.

We still don't have a diagnosis and that is difficult as well too. So until work) then he will remain in hospital and I at home and will continue to pray.

No one like to see their dad weak.



DAD SAYS: 
23 pokes (IV or blood)
4 X-rays
1 CT
4-5 cameras up nose
1 under anaesthetic - examined epiglottis, vocal cords, etc; took two laser biopsies
8 approx. specialists seen (approx. 4 ENTs, 1 speech therapist, 2 infectious specialists)

All biopsies, bloodwork, etc. are within normal except for a bacterial infection in my throat which has caused me to stop swallowing including my own saliva. If things do not improve this weekend, they will insert a food tube directly into my stomach.

Pray for healing so that I don't need this procedure.

Must celebrate birthdays with a balloon & tiara

Monday, 13 April 2015

NPO: nothing by mouth

This has been yet another exceptionally busy and difficult week for us. I'll get to the point. Dad started to choke on food at Easter. He was admitted to ER. He was was discharged from ER Tuesday afternoon but had more problems and had to be readmitted that night. He was unable to swallow any saliva, water or fluids and has had a feeding tube put down his nose to give him some nutrition.

Life is complicated.

So dad is in the hospital. Today is his birthday. He can't eat or drink anything. And he is needing to have a procedure/surgery done which will require sedation -- not exactly the ideal birthday. The docs aren't sure of a diagnosis but at this point apparently it's something bacterial so dad and I can't see each other. We are much more sympathetic to each others' journeys these days.

Please pray for our family as we are carrying another heavy load.

Family dinner together this past Christmas

Tuesday, 7 April 2015

Manure

This has been yet another exceptionally busy day for us. I'll get to the point. Dad, who infrequently sees need for a doctor, ended up in the hospital for a night with choking and having difficulty swallowing. The problem was caught early thankfully and he is "home" now being treated.

Nicole & Aubree came on Monday. We had musical caregivers at one point as a friend was caring for me & Matias, Nicole was driving from Kelowna, Xhevat was driving mom to see dad and dad was in ER. I had my regular four or five appointments and Easter Monday only complicated plans as many things were closed or excessively busy. And then there was bloodwork and chemo today. Dad got to experience part of my world as he got EIGHT pokes for bloodwork and IVs plus extra needles during his stay (I've never had that many in one day -- way to go dad!).

I might get in trouble for over sharing but I (and we) are getting overwhelmed by the little things and we're trying to hold it all together for each other. It is working sometimes. We need prayer obviously for maintaining our sanity and for dad to regain his health but we have other needs as well. My sister and her family may need help with rides or meals. Depending on how dad is doing, we may need some help with Matias. Xhevat has taken some days off to help us all (as he's doing much of everything in our daily lives). It's difficult to ask for help for me as bathing and lifting to and from the toilet is not something I feel comfortable asking of friends (hence one of the reasons Xhevat is off work and I'm receiving the assistance of palliative homecare). Rides are even difficult to ask for as I need assistance getting into and out of vehicles.

Life is complicated.

Our home is close to some agricultural fields and today was a day when they were spreading manure. When we got back from chemo it was certainly smelling like manure. This has definitely been a manure-y day.

Life has been more complicated. At least I get to park a little closer.

Saturday, 4 April 2015

Waiting

A year ago on the day between Good Friday and Easter, I was waiting and hoping and trying to get information. I had just been told my cancer had gone into my brain but I was still quite hopeful that treatment could be done on the two lesions they'd found. Later I'd find out that there were nine lesions in worse places than were anticipated which would require more serious treatment.

Today on the day in between I am also waiting but in a different way. I've doubled the average life expectancy of my diagnosis, have had a few more seizures and am not doing as well as last year. It may not be the answer I was looking for but I thank God for the time I've been given.

Really and truly I'm waiting for death (not knowing exactly what that means) but trying to live life fully from my bed at home. It's hard to not let things stress me with all things going on. Things that stress me can cause me seizures and pain. It's hard to allow the pain to force me to take more medication.

But I will wait... for Sunday. And when Jesus says it's time (and I don't know when that will be), I want to be waiting at the tomb with expectation.

Waiting & Expecting

Monday, 23 March 2015

Living Gifts

Over the past couple of month especially, you have been exceptionally generous with meals, cards & messages, visits, gifts, prayers and much, much more. We have been blessed not because of the objects we've received but because of your hearts of generosity, love, and encouragement. It's because of your character demonstrated in our lives.

It doesn't matter who you are... friend, family, stranger, co-worker, neighbour, church family, married to me... I'm thankful to God for you. 

Please know that if I haven't seen you when you've come or I've cancelled, it's me.

Thank you for being who you are and for being a blessing to me. You've given my heart life.

Some living gifts... lobsters!

Thursday, 19 March 2015

Days Lost

Around the time of my seizures I've recently learned that I lost days of my memories. I was "awake" for parts of them and making sense. I posted a blog entry and was interactive with others. Some moments I can recall -- like saying "don't call 911" but there are also times like travelling back from Florida that I remember nothing (sorry Jim... you're forgettable).

My brain just isn't what it once was.

At first I thought it was just minutes or hours, and then after asking questions I realized it was days. It's scary realizing that you've been active but have no recollection of anything.

Just another day in my life.

Spending more time in bed

Friday, 13 March 2015

Bad Days & A Better One

I feel like I'm a remnant of what I once was. I've been torn and reduced to lesser portions of me. I'm weak, needing to rely on others for the basics of life and being unstable medically. Emotionally I'm fragile and lacking motivation to do anything and everything except for eating a lot and still not gaining weight. I've learned there are hours and possibly days I have little to no memory of around my seizures. It's disturbing.

Having said that my family thinks I'm stronger this week than last. I have been trying to find my motivation, purpose and feist (which if you know me is not something I'm usually needing to find). I'm trying to regulate my pain medication and accept the advice I usually gave to others (it's ok/better to take pain meds when needed; don't just tough it out and think you'll be better for it).


I'm reliving life as a child and learning something new. With family, I'll be baking a friend's wedding cake and learning how to make fondant and gum paste flowers and decorations -- something I've never done before and should be able to do safely from home.

And then there's being read to. I could write a whole entry on this (and still might). As kids my dad would read stories to us going to bed. I was a very good sleeper and would fall asleep by the second paragraph. Dad asked if he could read his favourite  story to me again -- Narnia: the Lion, the Witch & the Wardrobe. So together we are each day. Me, lying in my hospital bed in our home's office and him slightly reclining, in the office chair beside my bed. This time I fight to stay awake.

It has been a good day today.

This is my arm today. I've got purple spotted leopard print bruising on my arms, thighs, ankles & feet. Gotta love the effects of medications -- which ones (chemo, my steroids, etc.) I do not know but apparently it's normal!

Although not this book, I finally got through "Are You My Mother?" successfully. It's interesting how the stories take on different meanings depending on what's going on in your life.