Today was Richard's worst day yet. Although I have a feeling that we'll look back at this and laugh that we thought THIS was a bad day.
Let me preface this post with the fact that I, personally, am so frustrated that all this cannot be done at the Cancer Clinic here in Abbotsford. I understand that VGH is "The Place" for the best Leukemia care, but there's a whole whack of stuff that could easily be done in Abbotsford, in my humble, non-medical, unresearched, sassy opinion.
What I need to keep in mind is that there are people who have to drive further than we do. There are other people going through this that have kids too just like us. And there are other people going through this that don't have the fabulous support system that we do. AND there are people that have diagnoses that are not as promising as ours.
He says it's the first day that he's actually come back from the hospital feeling worse than when he arrived.
Once again, we left the house by about 6am.
This was the point in time that he was supposed to stop all eating and drinking because of his Hickman Line operation at 11am.
We made good time. Richard was supposed to go for a heart scan to make sure his heart is able to handle the impending chemotherapy. That happened. That part went off without a hitch. His heart is fine. All is good.
Aili arrived at this time. Aili is a very good close friend of mine who just happens to have already been through this with her then husband in 2002. She had lots of encouraging words for us, and lots of information.
Now, Richard was scheduled for his Hickman Line for 11am. 11am passed. They said they were running late and it was looking more like 12pm. Then they said 2:00pm. At some time before 2pm (Richard is starving and thirsty), they say that they've had the call for Richard to come to the OR. So, they start the antibiotics.
And we wait. Richard is soooo tired. Richard is soooo hungry. Richard is soooo thirsty. Thank goodness we had Aili there to chat with, laugh with, and well, be sad with.
Then 3:00pm. Seriously? 3:00pm? Yup. Then, they come in and say 4:00pm. All the while, they're telling us that we need to come in the next day for a ....
15 MINUTE APPOINTMENT !!! Where they will change the gauze and tell us how to care for the Hickman Line.
Seriously? Seriously? Two kids. Abbotsford. Guy with Leukemia. Come in for 15 minutes. "Please waste 3 hours of your Saturday so that we can call you in again to be admitted on Monday in all likelihood."
Can you tell I'm soo angry? I'm soooo angry. I'm trying to be pleasant. I'm trying to be understanding. I'm tryign to reason it all with myself. "Okay, sure. They need to talk to him about more stuff." I just don't get why they couldn't do the Hickman Line when he was going to be admitted to start chemo.
Now, during all of this waiting, Richard also had to decide whether to give his consent to be part of a research study for a drug that they want to use in Canada that helps increase your chance of going into remission. After extra reading, asking lots of questions, and pondering, Richard decided that he would take part. Only to find out that we would be part of the random sample that doesn't get the drug. At least not for the first round of chemo.
4:00pm. We're told we've been called to the OR.
No one comes.
No one comes.
Richard and I fall asleep on his bed.
Richard's about to go to the front desk to say "I'm outta here."
And finally, at a little before 5:00pm, they come in to get him. Meanwhile, our section is closing, so they're going to take us to the OR and then dismiss us from there. Even our nurses from the past 3 days prior said how ridiculous it was that he was made to wait this long.
I would say he finally went in at about 5:10pm. It was supposed to be a 20 minute procedure. The doctor performing the procedure was having difficulties. Another guy had to be called in. at 5:35pm they told me he was about half way through. He got out at about 6:15pm.
He just looked wiped.
I'm new at this whole Leukemia thing... but so far... this really sucks. And I'm only the wife! Not the patient.
What a day.
Now we're supposed to go in tomorrow, smack dab in the middle of the day at 2:30pm. I'm bringing the kids. I'm hoping it will hurry things along when they see we have toddlers with us. We'll see. I'm probably just so naive.
This is only the beginning!
Was there some good news today? Uh... well, yah. It really sounds promising that Richard's going to get through this just fine. It was confirmed that he has AML with inversion 16, but we are still waiting for the 'subtype'.
Driving for 1.25 hours to VGH, having a dressing changed, learning how to care for the Hickman Line, and driving 1.25 hours home. With the boys. And of course, the DVD player for the ride home.
Wish us luck. Wish us speed. Wish us patience. Oh please. Wish us some patience.
This was not a fun day (except for hanging out with Aili!!! Thanks Aili!!!). The nurses and doctors are all really nice though. I should make sure to mention that.