For Every Three Questions We Get One Answer

One week later.

Last time we updated, Jacqui was coming out of heavy sedation and the Drs were trying to find a balance between the sedation and pain relief - well, mission accomplished!  On Thursday, she came out of the deep sedation and they did manage to relieve the pain with yet another new medication and since then she has been more back to her old self.  

Our hope was to then get her home.  But because of the results of the latest CT scan, the medical team is very reluctant to send her home.  Her situation is such that although as always, she looks and seems just fine, those darn tumours are very determined and just continue to grow unchecked.  As mentioned in the last post, the CT scan shows she has only a sliver of lung capacity left and they are concerned (and somewhat certain) that something catastrophic could happen suddenly again and they don't want her to have to risk not getting proper care immediately should this happen.  

They recommended a Hospice - and Jacqui was able to move into one closer to home on Tuesday - as she left the hospital, Drs, nurses and aides took turns to come in to say goodbye, wish her well and give hugs.

She is calling her space at the Hospice her condo in an old folks home - and she wasted no time "Jacquifying" it - Homesense is just across the street.  Although medically it is where she should be, she just seems so out of place.  She is the youngest by decades and every new staff member that walks in assumes I'm the patient - so either she's looking really good or I'm really looking like I need to be there - yikes.  It is much quieter, private and she can basically come and go as she pleases.  The food is better, the wifi is currently iffy, but she is coaching them in getting it up to her standards.  But as always, everyone loves her there and she is making her mark yet again.

So that's all well and good, but the fact remains that things are changing -
it's apparent when we bring her home and she has trouble going up and down the stairs
it's apparent when she puts on her Lulu Lemons and they are baggy
it's apparent when it's hard for her to eat because of the way the tumours are pushing on her oesophagus
it's apparent when she is out of breath and has to rely on her oxygen tank
it's apparent when she is too tired to see a friend - very apparent
it's apparent when she says "I just don't feel very well"
it's apparent that we have no idea what is next.

So this is my life,

and I want you to know that

I am both happy and sad

& I'm still trying to figure out

how that could be

*perks of being a wallflower

   

She's a wonder...

Last Saturday morning, for a few minutes it seemed like the cancer had inhaled - pain was absent, all was well and plans were being made - and then it exhaled and it was like a fiery breath. Pain came back In a way that it had never been felt before.  After a few hours of trying to extinguish it ourselves with what we had at home, we realized that something must have changed and we needed to get some help.

So off we went to the Foothills ER to find some relief.  Unfortunately going to the ER as a cancer patient isn't the best option and neither is going to any hospital on a weekend - we had to deal with several unfortunate and very frustrating missteps but eventually got her a room.  It still took a bit of time to bring things under control but by Monday evening things were looking better and Tuesday morning we were hopeful that she might be coming home soon.  

But the cancer took another breath and this fiery exhale was worse than the first.  The pain became unbearable and they ended giving her a drug that has made her very sedated, she has been mostly sleeping but she has no pain.  Now they are working on balancing the pain and sedation so she is comfortable but more responsive.  Such a fine balancing act.

Anyways, that's a quick update and for those of you that have been messaging and texting Jacqui and not getting responses - that is why.

And things have changed, there was another CT scan and if possible things are even more grim, this poor girl is fighting so hard against a body that is betraying her.  She's a wonder... 

Grateful not Grateful

To start - Jacqueline is stable here at home, we're just going one day at a time, so this entry won't really have any news. It's more just an observation I wanted to write about, so feel free to ignore - I know this isn't about me haha!!!

A few years ago closer to the start of this whole cancer thing, I started off the year with a gratitude journal - I have several journals for different things and this just seemed a good and natural thing for me to do.  I kept it up faithfully for a few years and it was great to help me to focus in both the good and bad times but frankly last year every day it was becoming a huge chore and it was getting harder and harder to come up with things or it was the same thing over and over because some days were just so difficult. 

My last entry was on November 19/14 and this is what I wrote:

"Here is what I'm not thankful for today - chemo starts tomorrow, we probably won't be able to go to El Salvador in January (and a few other things too personal to share).  I will have to look hard for something today"

And that was it - she did start chemo and we didn't get to go back to El Salvador and I guess I didn't find anything to be thankful for that day because I never opened that journal again - until recently

And then I read this:

It is not joy that makes us grateful

It is gratitude that makes us joyful - Brother David Steindl-Rast

That inspired me to try this again but as I started I realized that for now, during this hard time, many things that I feel grateful for have a flip side, for example:

I'm so grateful that I can be home to be with Jacqueline BUT I'm so ungrateful that she's going through this

Or

I was so grateful for the great run I had on this beautiful morning BUT ungrateful that she can't run with me anymore. 

So I think I will change my journal to a "Grateful not Grateful" journal - I think it's more real, more honest, more me.  I guess I just like the balance - apparently a feature of a Libra.

We must embrace pain and burn it as fuel for our journey

A long week at the hospital has finally ended!  Jacqueline is home from the hospital and the pain is being managed much more efficiently.  Those of you who have experience severe pain know that when you are being treated you are constantly asked what your level of pain is, on a scale of 1-10 (10 being the worst).  When Jacqueline went in to the hospital last week, her pain was consistently about 6-7, spiking to 8-9 often throughout the day, now it is hovering around 3-4 with very few spikes.  We would love it to be 0, but that would likely mean a constant sleepy state. She is feeling pretty good about where she is at and we are finding her more herself than she's been since January. 

We found out some interesting things in the hospital after all the usual poking and prodding and testing:

- The tumors are growing, her left lung is now about 95% taken over (a big increase from a month ago)

- Her heart has been pushed completely over to the right side

- She is operating on a 30 - 40% lung capacity

This is all bad news, but the amazing thing is that although these things are traumatic, because they have been relatively gradual, her body has adapted and she is still not needing oxygen - pretty amazing!  But of course with things as they are we know that things could change quickly and so we continue to try to live each day intentionally:

we must embrace pain

and burn it as fuel for our journey

                                      Kenji Miyazawa

Her condition, these facts, open the door for many very serious conversations that are hard and sad, but she was able to have some of them - with us, with friends and with others that brought some healing and hope.  Being at this stage brings what you think and believe into focus in a way that never truly happens any other time.

Her time in the hospital was very eventful, two different rooms, 7 different roommates - men and women - MANY interesting, some very sad stories.   So often over the years the staff have looked at her as young and healthy other than the cancer (which makes me crazy so I remind them) and this is somewhat understandable as she is probably the same age as the majority of the nurses and 30 - 40 years younger than any patient.  But this group of nurses was different and they really took the time to engage with her as not only a patient but as a peer. Recognizing that Jacqueline is going through something they don't otherwise associate as something that could happen to them.  Often we'd come in and one of the nurses would be sitting down just chatting - it was really nice.  Also the doctor, resident and all other staff were so kind - that really helped to make it so much better  - because from the moment she arrived she was asking when she could go home.

Speaking of which, she did get a couple passes on the weekend so one night we went to a family friend's house and visited with dear old friends who had come from far and wide to all be together. Events had to change because of the hospital stay but the joy of being together was wonderful!  And the other was just at home - just the family - some well needed "alone" time, a visit with Jany Valentine and of course Nachos (it was Sunday after all).

So she's home, the medication is organized - thank goodness.  I have taken a leave because organizing that is a full time job - and this Sunday is Easter -  a time of renewal and hope  - and in our journey we are reminded:

there is no hope unmingled with fear

and no fear unmingled with hope

                                                                                               Baruch Spinoza