The week that was chemo.

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" )

Blog entry preceding this one is "Dreaming of me as I dreamt of him...a letter." 


To date J.J. has had eight rounds of chemotherapy treatment. Before we were hoping for remission as a result but as we have been told, the treatments are now for quality and quantity of Life.


So the week that was...


MONDAY:


6:30am and Lily is woken by her alarm clock. Dragging her feet as she wipes the saliva from the corner of her mouth she barely glances at the full length reflection, she glimpses her swollen face and can feel the bone disease that ravages her once passing looks. She has forty-five minutes to get herself ready, their five year old daughter ready and her husband J.J ready - first things first, let's check Face book.


7:30am and somehow they are all in the car. Lily as she has done for the length of their marriage has assumed the driver position. Now, because she is responsible for the daycare children in the car but also because J.J's driving abilities have become questionable under the influence of so many drugs.
Well, Lily thinks they have always been questionable after the drive-way letterbox was run down in the wee hours of the morning by the Magna, and the Nissan ended up in the front drain another early morning at the hands of J.J,  yet she would never mention this to him...


9am- The waiting begins in the Oncology department waiting room. A vastly long waiting room, with patients of varying degrees of decay or life of cancer. It's not pretty - it's just big and is a constant reminder of how many lives are affected by cancer.


11am- Our 9am appointment finally takes place. J.J lists his current ailments. Pain in calf muscle. The ability to urinate is lack lustre. The tumour on his forehead is getting bigger. Lily can see it though she tries not to draw attention to it. She can't help but joke within herself that J.J's becoming one of those posters in school showing the evolutionary process and places the tumour forehead roughly around Cro-magnon man period. Making inappropriate jokes helps Lily get through the day. The doctor expresses concern about the calf muscle and says further testing is needed and suggests Lily goes home.


12: 20pm - Lily walks in the door at home to a phone call from J.J who says she needs to come back to the hospital (forty-five minutes away) and pick him up. Already she silently sobs into the telephone saying " No! Bugger! okay.... I'll wait for the next lot of daycare kids at 1pm and be there soon"
1:45pm - Picking up J.J out the front of the hospital. Calf muscle pain is not deep-vein thrombosis. On the way home.
This day just sucks.


J.J:
I think I'm awake when Lily gets up by I choose to ignore the alarm, I feel like I only just fell asleep. I know I was awake and reading at 3:40, sometimes the sleeping pills just don't work. So I roll over and selfishly try and go back to sleep, I get 15 or 20 more minutes until little Princess Arwyn comes in and tells me to get up. I immediately obey of course. We do the advent calender and then hurry down to the car. I debate checking face book, and decide all I have time to do is log in.


Around 9am we saunter into the oncology clinic. The lineup for the clinic is the longest I've ever seen, I brace myself for a long wait. It's always pleasant to see the same faces in clinic, its a way of measuring who is succeeding and who isn't doing as well in their own battles. It's also a way of catching up on the faces you don't seen any longer. This, will sound terrible, I can't help it, but I always have to stifle a sneer when I hear of someone doing exceedingly well. I truly do wish them well and I don't bare them any ill will, but I can't help but think...


Two hours after our appointment time, we finally get in to see the Doctor. We list all the new ailments that seem to be afflicting me. I thought the intermittent pain in the armpit would be of greatest concern, but he focused on the pain in my calf muscle and numbness in my groin. It feels like I just spent eight hours on a bicycle saddle. He explains that the numbness may be caused by tumours spreading to the spine. Yeahhhh! O fabulous day! Callooh! Callay! And we'll do an ultrasound on your calf to rule out DVT. As its unscheduled it could be a few hours wait. I'm suddenly very grateful to Kylie, Stu and company for the Kindle. We recommend Lily take the little ones back home. As it turns out I only wound up waiting 30 minutes for the scan. I think I rang Lily to come back and get me just after she got everyone settled.
She was clearly unimpressed.
I told her to wait and come get me after one. We've sort of gotten used to this running around and racing back and forth. It's still annoying though.
The good news for the day was no deep vein thrombosis.


TUESDAY:



7:30am back at home to get J.J, his suitcase for chemo and Arwyn. They are off to the hospital for J.J to tuck and roll out the door to admit himself for his week long treatments.


9:20am - back at home, daycare can finally start with some degree of normality.


9:30am - Lily realises the kids can't go outside and play as a large branch has half broken off from the last storm that came through over the weekend . It's from the Jacaranda tree in the backyard and is hanging from the tree in the play zone, thus is a hazard. If she wants the children's energy to burn off, they need to run around - she pulls her socks up, puts on her man gloves and gets the axe from the shed she loathes entering (yet there's a twinkle in her eye as she gets to play with something sharp). The daycare kids play in the undercover area well away from the strike zone and Lily chops wood (said with manly grunting).


15:38 - Lily's head starts pounding...headache starting in on left side
16:30 -eating KFC for dinner, can't be bothered cooking, Arwyn having Wiggles spaghetti and toast.
17:35 - Lily picking up night time day care kids


1800 - Lily phones J.J to talk but he can't be reached. He wants her to edit his post for his own blog yet she can't as she doesn't have access. Lily continues caring for other people's children as well as entertaining Arwyn.


19:30 - "Why isn't J.J answering his fucking phone?"


20:45 - Lily finally gets onto J.J " Why weren't you answering your phone?
23:53 - Headache still in full swing. Lily attributes it to mowing the lawn during the day. It always happens. Whether it's the fumes, the vibrations, the noise - regardless, mowing the lawn may mean neatly manicured lawns but it always means mind-searing agony as well. Lily is ready for bed.


J.J: I want to ignore the alarm again, but I know today I can't. I still need to move quickly to have everything ready to race down to the car when Lily gets back. I give Arwyn a big hug and kiss and we do the advent calender again. As we are going outside Dr. Seuss (the cat) makes a break for it and I quickly have to chase her back indoors. We play sticker car (I won), eye spy (Arwyn won) and knock knock on the way into the hospital. The traditional hugs and kisses are exchanged.


I head upstairs to the oncology ward, already knowing that there is going to be some miscommunication regarding what was meant to be happening today. Sure enough, I am told to go to the daycare unit and wait. The day care unit tells me to wait as well - they can't run the chemo and do an MRI at the same time. So my 8:30 arrival was pointless as the MRI wasn't scheduled until 12:30. Miraculously the got me in to it 90 minutes early. Not going to complain about that.
Around 1pm I get to the ward and settled into my bed. Only two others in the room, one I've shared a room with several times before, nice bloke named Brad - he's a Kiwi, a year younger than myself, and kept himself busy before getting cancer of the oesophagus by having eight kids. The other fellow is an elderly German man, very friendly. We find out that he is incurable as well, which starts off a conversation about Lutheranism and God curing me.
Around 4 I get a visit from my radiologist, and he happily informs me that it doesn't appear to be cancer spreading to the spine and he won't be doing radiation on that spot.
Whew....
Dinner was fairly unappetising Honey mustard chicken, mashed potatoes and zucchini with chocolate mousse and custard for dessert.
I'm now fully settled into the old routine of chemo. It's now just a matter of sleeping when I can and watching the time go by until I get to see the two loves of my life again.


Wednesday:


7:25am - Lily is woken to tiny perfect fingers poking her eyes and exploring the inside of her nostrils. Her five year old daughter Arwyn slept in her bed last night. A treat for Arwyn, for Lily it is a sense of safety and security for without an extra pair of ears to hear any noises during the night, Lily must be the nightwatchman  - the thought of anything happening to that perfect little girl would destroy both Lily and J.J more than what the cancer is doing to J.J's body.


16:30 - Ring J.J and Lily is informed that he was sleeping and can I ring back later. The boy doesn't sound well, and there's nothing I can say or do to make it better. Though this is probably girl thought and he probably just is tired.


20:00 - Finally get to red rooster for dinner, she can't be bothered cooking. Lily thinks she is a bad mother.


1am - Lily finally goes to bed, and so the chemo tradition of being unable to fall asleep until later as her husband is not with her begins.


Thursday:


8am - Lily feels the back of her throat with her tongue and knows it's the beginning of a cold. Another chemo tradition seems to be on it's way as without fail, every time J.J has chemo a cold goes through the house - a cold to a chemo patient can be deadly.


16:30 - Lily has great clients who allows her an early mark to visit J.J in hospital. Subway for dinner tonight. J.J's spirits in high gear.


20:40 - Arwyn and Lily showered, Arwyn fighting going to bed by being cute and adorable and Lily senses that Arwyn knows she's being cute and adorable.


Midnight - "Fuck it" , Lily very angry with herself for having another late one wondering why she can't be in bed at a reasonable hour.


Friday:


8:54am - Lily is pissed at herself for self-censoring. This blog was suppose to be about truth, about their truth, about their feelings. She wonders if it were her that was terminal would she be able to speak the harsh truth that needs to be said - but then she also wonders what is the point, don't kick a dog while it's down. Lily at a low ebb herself - placing  it to all the dinner junk food she's consuming. "God, have to stop eating,  - going to do the 48 hour famine, cleanse the body, de-tox, need new thoughts - FLAT"!!


20:10 - It's been a very very blah day. Not as flat as earlier but still she asks, - "is the day done yet?" She's been working since 8am.....still not finished, bring on 9:45pm.


Saturday:


8am - Arwyn's Swimming Lesson


9:45am - Lily visits the man in hospital, bringing him goodies and most importantly - them!!


12pm - Leaves hospital, drive to shopping centre arrive 1pm, only have 45 minutes to wait in Telstra line to pay phone bill and get essential shopping done like bread, milk, food in general. etc She also went and bought a small wooden chest for J.J and for Arwyn. J.J is planning to write cards for all of Arwyn's future events - her birthdays, Christmas's, graduation from high school, university, first major holiday, first major job, engagement, wedding, grandchildren. Lily cried when she tried to explain the chest's meaning to the salesgirl.


2:05pm - Arrive at awesome hairdresser's for a cut with Arwyn


4:30pm - Drop in on friends


5:45pm -  still don't wanna cook and decides to eat out with said friends.


7:30pm - Arrives home, really, really tired..... fighting sleep to put Arwyn in bed and stay off facebook and blog.


8pm - Staying off face book and blog is not happening...... 8:07pm forcing myself to get up from compu..... 8:20pm Arwyn now in bed, back on face book. Lily should be doing her paperwork for the business, but cannot be arsed.


Sunday:


3:40am - Lily had had twinges of cold or flu like symptoms for a couple of days. A twinge here, a sore throat there, but it was usually only in the early morning and would disappear by noon. She did not expect to be up at this ungodly hour with instant man-flu and conjunctivitis of one eye. She's wondering which halfling she was infected by but also recognises that she's been in both a hospital and restaurant on the same day one of which would be the likely culprit. She's due to work in three hours and has no way to contact parents at this hour. Today does not bode well... she wonders if J.J will even be allowed to come near her with all these infections.


6:36am - Lily is up and feels like she is Patient Zero for the Zombie apocalypse. She just wishes her clients would get here on time so this feeling for being up for nothing goes away.


12:13pm - J.J home asleep. Three daycare children asleep. Arwyn has laid claim to the TV in the lounge and wont let Lily down for a kip.... god is this day over yet.


12:19pm - While looking at an old journal entitled " Ode to Lily's Ovaries" (another therapeutic tool on the infertility roller coaster), Lily came across an entry that makes her sadder than what she thought she could be at the moment,
" July 25^th, 2005.

As previously mentioned, J.J is still giving me love poetry every day. Sometimes they are poems; sometimes they are lyrics from a song. Today he has written one himself, and while it may win no prize it continues to win my heart.

Death holds no fear for me
Save only one
That I might die before you,
Leaving you to go ahead in this world without me by your side
Sharing our joys
Our Passions
Our Fears
Our Sorrows
When Death does call upon me
Beckoning my time to go,
I want to be able to gaze upon the face of my beautiful bride
With eyes more luminous,
More grief stricken
More grateful
Filled with an unrepeatable sorrow,
And whisper in your ear
Only the vastness of the eternal Heavens
Will ever be able to speak of how much I love you."

That was a hard one to re-type... to reread. It's lovely in its sentiment of his love for me yet the implication falls heavy with a thud without an echo of sound for what is happening to us at this very moment.

19:19 - I am looking at J.J, no longer writing this in the third person as a form of this event happening to someone else, but looking at him because this is happening to us, this is real, so very real. J.J has the lost the ability to use his right hand to use a pen, to type, to hold things. His pain is more than he is letting on - and we both know that life is still going on around us, and will continue to go on... we understand, but I don't want J.J to be forgotten, ... for that matter I don't want our love to be forgotten, I don't want to be forgotten.


He's looking at me, filled with love just as I am filled with love for him.


But it's hard... because I am waiting to have my heart torn from my body by his death.


That's it, I can't write anymore tonight... 




Blog entry to follow "Moments in History"