I woke up today- AND- this was all a just a big prank. Logan didn’t really have a brain tumor. It was a mistake. You all had me fooled.
Oh how I wish…..
how I wish so desperately this whole thing could just be a really bad April fool’s day joke and that someone was going to come along and make me feel silly for believing something so ludicrous for so long.
I wish the joke could on me.
But its not.
Reality punches me in the gut these days. Today was Logan’s second dose of full brain and spine radiation. There is no turning back now.
We have 18 more to go and instead of counting up, we are starting to count down. It is becoming a bit surreal and I can’t quite wrap my own head (pardon the pun) about what we are really doing. Radiation is such a weird treatment. The magnitude of how it works seems so much bigger to understand than chemo- yet it kind of feels like you aren’t doing anything at all. You can’t physically see the effects like you can with chemo so it almost feels like maybe you aren’t doing anything at all when in fact- you are doing so much.
This new radiation is different from the “mega boost” she got over the last few weeks. It is much more technical to get her ready for the treatment and planning each day takes longer. They start by taking pictures each morning to make sure they have her lined up precisely and exactly within the field they radiated the day before.
Precision I am sure is very important but seeing poor Loggie with her head screwed to the table for so long while they call out numbers and fiddle with slides isn’t easy.
Yesterday was really long, radiation took close to 3 hours to get her set up and give the treatment. But add the drive downtown it is more like 6 hours round tip. Today was quicker, and they assure us each day will be better, but Loggie had to be in her immobilization cast for over an hour this morning.
When she finally got out of there, her swollen little face was creased with all of the lines from the hard plastic mask that is bolting her down.
She is not loving radiation so far. No toys, or crafts, or games at the hospital. A lot of grumpy patients, none of which even want to make eye contact with us as Loggie pointed out to us today and the building needs a make over.
The cancer agency is very dismal and seems to lack that “healing environment” kind of feeling.
They don’t have many kids to see each day and I think Logan brings a breath of fresh air to the place. Our team of technicians are nice, and really thoughtful. Today they showed us that they filled the “tickle trunk” with scrap booking materials especially for Logan.
Dr. Goddard is our radiation oncologist and she is finally starting to growing on me. She is nice enough but she is weird too. She has a very strong English accent, no fashion sense (I’m talking her grandmothers slacks) and today she told me her favorite kind of vacations were tip toeing quietly through monasteries in the northern UK. Umm what?
She is soft spoken, and calls herself the “doom and gloom” doctor. I told her at least she had better name than the other radiation oncologist we met Dr. Fryer- and I am not quite sure she got it.
Brain doctors are odd.
I think they spend so much time learning and they are so incredibly smart that they become socially awkward. Not that it matters, after all I am not looking for a friend. I am looking for someone to cure my child. I trust her. I think she is really good at her job.
Her only problem is that she cares too much. She can’t separate her feelings from her work like some doctors can. I think she gets the level of desperation families feel but she also knows that what she can do to help is also terrible. Especially when it comes to radiating children’s brains. So because of this she feels the need to apologize.
She apologizes to me every time she gives the treatment to Logan- over and over again she tells me how sorry she for what we are going through.
It used to REALLY bug me.
But now instead of wanting to punch her in the face every time she is about to utter the words, I actually feel comforted.
As much as I know she can’t imagine what we are going through, I also have no idea what it must be like to be in her shoes. I can’t imagine having such a huge burden placed on your shoulders every day. To try your best to save someone’s life, all the while knowing you are likely harming them, is brutal.
Despite her profession, she is still a human being, and she is a mother. She is a smart doctor, but that doesn’t mean she has all the the proper words say. There are no words and if sorry is all she’s got, I get it. I too am sorry she has to face this everyday.
Jared is away for work this week and it has struck me how much I rely on him. I miss him, I am glad I don’t have to do this alone. He called today to say that the 2nd week of his trip had been cancelled and he will be home this Friday instead of next. I started to cry. Although our fuses are short these days, and we drive each other crazy. Not having him here reminds me how lucky I am.
Loggie is still tired but reducing the steriods seems make her happier. We have a better handle on her nausea and are managing the headaches dizzy spells with the new cocktail of medications.
I told Dr. Goddard the good news.
As promised she was doom and gloom. She assured us that Logan was going to be sick this weekend.
Her words exactly. “I’m so sooorrrryyyy but spinal radiation is very bad- worst actually, for nausea and vomiting. I am expecting her to have a very poor weekend.”
Ummm- Ok Dr. Negative, go tip toeing through the tulips or whatever the hell you do, would ya?
Loggie smiled and asked for a new script for ondansotron and nabilone (THC).
I am so proud of her for being optimistic and rational.
She is level headed and strong but sometimes the fact that she is so stoic worries me. I read a book recently about cancer patients approaches to healing. One part talked about the chronic complainers. It said you never have to worry about them. They are extroverts of illness, if you will, and as such they do a pretty good at making themselves a priority. Because, as the saying goes, the squeaky wheel gets the grease, these patients rarely slip through the cracks of the medical system.
On the other hand the ‘I’m fine’ introverted patients are the ones you have to worry about. This author believes that the silent ones who think they can handle it all on their own bottle things up inside and worry about how everyone else is doing, thus using important energy they need for healing. Everyone assumes these people are doing well, and pillars of strength when really they are just taking care of us more than they are taking care of themselves.
Logan is a bit like the latter, and although she has me, the loud mouth extrovert demanding care, I am concerned that some times she tries too hard to be too strong all the time.
Having shared that, she does cry from time to time and today was one of those times. She cried not because she is sick, or angry or tired but because her hair is falling out again. She doesn’t have a lot of hair, (it is actually more like peach fuzz) but it was enough to make her feel normal-ish. It brought her a tiny bit of happiness to fluff it up and wear headbands from lululemon like her friends. It made her feel human.
Cancer is physically hard on the body, but what is harder is how it chips away slowly at your mind. It is a bully that over time wears you down. Hair isn’t the most important thing, we all know that. But being bald just reinforces you are sick- and all the cute hats, great wigs and extra makeup in the world doesn’t change that.
We have been told that the area where she received the mega boost of treatment may cause her to be permanently bald. We are hoping that won’t be case. The rest of her hair should grow back, but thinner. Unfortunately we won’t know how thin for a long time yet because chemo starts just 5 weeks after we finish radiation and will last well over a year.
So, that is it, hair or no hair- joke or no joke we must carry on, this cruel reality is not an April fools day prank- these days it is our life.
