The start of another week of radiation.

Loggie had a good weekend, it was busier than any other weekend we’ve had since the start of radiation, and although she felt sick and tired she rallied through. It was good though to see her trying to participate in life and reducing the dexamethazone has been good for her spirits. We are slowly starting to see the Loggie we all know and love return. It has been a long haul.

 Radiation has caused a tender swollen area on the back of her head. The area that received the mega boost seems to be hurt much more  than the rest of her head and spine and she is complaining that the area is sore. I would say it is kind of like getting burn, and then another one on top it and again…and again…you get the picture.

She asked if we could maybe do a little “retail therapy” and get her some new spring clothes for a little pick me up, she knows how to work us.

 Jared suggested I to take a bit of a break and go shopping for the day without Logan in the states. I took him up on it and it was a really nice break. I felt guilty leaving but I needed the time for myself and I was glad I went.

And surprise, everything was totally fine. Logan baked cookies at Nana’s and had sushi with Joyce and Kendra had the whole family over for dinner.  They were happy, fed and entertained all day. Medications were given on time, the house was clean, and the kids were bathed when I got home. Gold star for Jared.

Logan was a bit sad that I wouldn’t let her come shopping with me but I  wanted to shop and lose myself for a few hours in just buying things.

Who ever said that things can’t make ya happy is wrong. My new Coach purse is making me very happy. 

Brody also knows things can make you happy, and he got spoiled with things this weekend. He turned 4 and suddenly thinks that means he knows every thing.

I told him it was bed time tonight. His reponse “I know it is bedtime, I told you when I turn 4 I know everything”

I think I am about to have my hands full but on the bright side, maybe he can teach me a few things. God only knows these days, everything I thought I knew…isn’t quite the way it is.

Brody is smart. He has things figured out. He understands so much more than most four year old kids would and he has a way of making us think differently.

A couple of days ago he wanted to play trains with my dad. My dad had no interest in playing and was channel surfing trying to avoid and distract Brody, but Brody would have nothing to do with

He kept bugging, and finally my dad was forced to be honest and tell him that he didn’t want to play trains on the kitchen floor because he was old and wanted to relax. Brody looked perplexed  “When you get little again papa then you will want to play trains with me?”

My dad didn’t know how to answer.

We all looked around the room at each other and silently pondered if we’d ever get ‘little’ again and then papa replied.

“When you are born, you are little, and you like to do things that are fun all the time. Then you get big and you forget how to do fun things, but not you Brody, when you get old I don’t think you will ever forget how to be little.”

Brody looked completely bewildered and I am pretty sure we had no idea what my dad said but we knew what he meant and we played trains all night.

Today marks the half way point of radiation, which for some of you may seem crazy. I am sure in the normal world the last few weeks have flown by but for us we can’t believe how slow the clock is ticking- we still have another 16 treatments to go.

RADIATION SUCKS!

O.K.  we are  done! over it…and we carry on.

Loggie had a new technician today who bolted her head so tightly to the table that she still had the marks on her forehead almost 2 hours after we left the agency. New guy, but really, Logan joked it was already bad enough being bald, now she would had to be bald and look like a checker board. She didn’t complain but I think I am going to ask him to go a little easier on her tomorrow.

After we left radiation we went to the hospital for blood work It is remarkable and exciting to see her ANC over 1.0 (that means white blood cells and in the chemo world you usually have NONE) her hemoglobin was also 100 so she dogged the blood transfusion. Again she was sad- the kid is a vampire and loves getting blood.

She had her pentamadine treatment today (a drug she inhales for about half an hour into her lungs to prevent bacterial infection) and afterwards she had a weird dizzy spells and then had really strange tremors in both her hands and legs.

We all freaked out a bit and then before we knew it she was better. Might have been from the ventaline they give before the treatment to open up her lungs. Apparently low blood pressure can cause side effects like this.

On our way home we stopped to order Brody’s birthday cake ( yes I do have another child) and Logan spent the rest of the night snuggled up on the couch under her new lap quilt. Tired.

She did well eating tonight, her swallowing is so much better that we rarely use the tube these days. I feel sad for her that her appetite will subside soon. They are starting to ween the steroids again. It is time. although she eats well. She is so angry and depressed when she is on it. It is a terrible drug.

We talked about increasing her dose of THC so she still has the munchies. We want her strong for when chemo starts and apparently Cisplatin has a nickname- barf festival. Loggie can’t afford to lose much weight so we will consider this plan if she stops eating again.

One other thing,  Loggie shaved her head tonight.

She wanted to try to wait until balding for dollars so she could shave it off with her team but her little buds of hair they were falling out all over her pillows and hats and making her super itchy. So it is gone and once again our Loggie is bald- and none the less beautiful.

The ‘Coles notes’ version of our day

Woke up in a panic…garbage day. Crap.

Outside at 6:30 in the morning sorting garbage- hoping that it wasn’t a sign of how the day was going to be (trash).

Organized medication.

Showered (not joking- it happened).

Went to Starbucks (Because I don’t drink enough of it at hospital and I was too tired to make coffee)

Drove downtown (I hate traffic)

Sat in the waiting room for 2 hours

Finally…. Loggie got treatment.

Drove home.

Organized medication

Worked in the garden for a bit..(loved the vitamin D.)

Ate dinner.

Bathed the kids.

Organized medication.

Went to bed. Couldn’t sleep.

Got up.

Blogged.

Other than the treatment portion, it was a pretty ‘normal’ day. I did normal things almost all day and I was telling myself “OK, drinking coffee, normal. Driving- normal. Gardening- normal….” but nothing felt normal.

It is weird when you have these kind of days. When every single moment of the day is filled with thoughts about what has actually happened.

HOLY SHIT- MY CHILD  HAS CANCER.

I woke this morning knowing I’d dreamed about treatment. I just couldn’t remember what it was. Cancer is always on my mind.

I sat today in the waiting room and played my favorite ‘Guess who is getting treatment today-‘ (although some times it was very obvious) but once I figured out who it was (the nurse calling them in was a dead give away). I began to wonder what type of cancer they had. What their story was. How long they’d battled. How they were dealing with it. Did anything feel normal to any of them anymore?.

One man who was wearing no pants from the waist down (my guess prostate) was clearly in a state of total disillusionment and shock. I listened as a poor technician explained over and over again what it meant to have a full bladder and how and when he needed to drink his water.  Drinking water was no longer normal.

What a strange awkward dance we do with illness. It seems to me that most people cope by trying to  guarded, disconnected.  They can sit in the same room with others who have the same disease, half naked and not say a word.

‘Don’t look over there, there is a little girl. Oh my god, that means she has cancer. Don’t stare. Oh god she seen me look, look away stare at the floor. Always look at the floor.’

I thanked god that we had Brody with us today. If it weren’t for him being all cute and innocent- we would have been avoided like the plague.

Brody doesn’t ‘get’ that part of cancer. Cancer has been Brody’s whole life. He is comfortable with awkward. He has never known the world with out cancer, so when he politely asked a man if he’d put on his ‘pajamas” back on so he could watch 101 dalmatians with him. I had to laugh. Brody had no idea that the man had to change out of his pants into a robe so he could get his treatment, I was just happy he knew that it would have been totally inappropriate to watch TV with a half naked old man.

The man told him that it wasn’t PJ’s he was wearing and left it at that. Brody replied “ah you must be  gettin’  your treatment too- you don’t have to take your pants off yet- It is a long wait you know, you can almost watch a whole movie and you might get cold”

The innocence. Radiation to Brody means half naked old men in Robes, and almost watching an entire Disney movie except the ending…and that is it.

No worry, no contemplating normal, no focusing energy or sending reiki. No praying so hard that you feel like you are going to puke.
No trying to come to terms, or wondering ‘what if’.  Instead he has pure and innocent impatience for all of it.

Isn’t that cancer thing gone yet? Why do we have to drive down town again? what the heck is taking so long?

And truly I guess that is the most normal thing about cancer. It is just the ultimate test of patience and faith. Not what will happen, and of not having control of the outcome you have to simply wait and see- how the new meds work, what the next doctors appointment will bring, if the blood work, the MRI,  or the radiation is doing its job. Whether the next spell of nausea will start the day or end the day. We do a lot of waiting and for someone who is a type A like me- it is torture.

But all  good things to those who wait. Right?

Nana made Logan a quilt and brought it to her today. It was a nice treat to end this totally, normal, abnormal day.  Tonight as I wrapped her up in it, I couldn’t help but  think how similar a patchwork quilt is to life.

It is  remarkable how something so beautiful and can be made from…well scraps.

Leftovers of beautiful fabric that are too small to do anything else with. Amazing how so many different and usually mismatched pieces can be sewn together and it can seem like they were always meant to be perfectly paired

Cancer is really just one small scraps on Loggie’s quilt of life. A quilt can’t be made without numerous pieces of fabric which just like life some of those pieces aren’t as significant as other.

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. 

Ironically we ended this week by completing Logan’s 11th radiation treatment. Another 11- our number.

She seems to be feeling better and we had a few people say she looked brighter. Less lime green and more glow in the dark I guess.

 Hoping it is the extra “boost” of reiki that she is getting and not the extra boost of radiaton.

Doctors have started to ween a few of her meds. Thank god. Taking  Dex is never good and Loggie has been on a high dose too long. She is quite puffy and it has given her a round face,  She is SO CRABBY, nervous,  and agitated. She cries all the time for no reason, and she is starving all day long, which means she is gaining weight like crazy (o.k. maybe that isn’t so bad).

So it is time. We will try to lower dose and hope the drugs will still work and the side effects will be less.

Her blood pressure is much better with the higher dose of medication. Today she was close to normal, probably one of the reasons she is feeling so much better, Try functioning with a BP of 50/30.

It has been a long haul and we are aren’t even half way through this treatment yet.

 Having said that I have developed some coping skills. Basically I just clean everything.  So far I have thrown out 3/4 of my closet,  donated 9 boxes of useless junk, and I today I started cleaning the grout around our window sills with vim and a toothbrush.

We all deal with things in our own way I guess. Jared builds things- this week he has started an outdoor kitchen project, in the freezing cold and snow. Optimistic guy.

And Brody, well he has thrown about 57 temper tantrums in the last 24 hours. We have no idea why he is so upset but in all fairness I am pretty sure he doesn’t know either.  So he just throws himself on the ground and screams.

We are all coping, and luckily we are allowing each other to do so however they need to- renovations, tantrums and wine, we will get through this.

Her  blood counts are really good (surprisingly) and that meant we didn’t have to stay in clinic today to get a transfusion blood. Loggie was mildly disappointed. She is becoming a vampire and looks forward to her infusions.  She hoped for a little recreational top up for the weekend but instead she was told to go home and rest- I like that plan. We could use a little down time

Today she got off the couch! HOORAY LOGGIE BEAR!

I can’t believe how hard this treatment has been on her, not a lot of improvements since surgery and radiation is literally wiping her out! She can’t handle the double treatments. So we are only going to do one per week. Hopefully we are still going to finish in time for Maui.

We are trying to concentrate giving her all the time she needs to heal. She is sleeping most of the days, her energy level is very low but I think sleep is what she needs.

We are all wiped. We are coming down off the adrenaline that has been feeding our bodies and now reality of what is happening is  hitting us all-  hard.

Every one of us is tired. You would think after 3 years of this we’d have a routine down pat, but the reality is it just gets tougher as the time goes on. Less Capacity I guess. Physically, and emotionally every one of us is struggling in our own way. Brody is being a little bugger, he won’t eat anything other than peanut butter- Go figure.

We are not coping with much. Even the medication seems to be hard to manage and is becoming an irritation dealing with organizing it 4 times a day. So we bought one of those pill organizers old people use. At least for the next couple of days before the next medication change we can just grab a container.

We realized when organizing all her medications that she is taking  27 pills a day!!!!! My goodness! Can you imagine taking all of those pills and not being able to swallow on your own. That is a lot of chocolate pudding.

Speaking of chocolate pudding, Logan has been given daily laxatives help her poo. Treatment is making her brutally constipated and cranky. We can’t mix it with pudding because it is a liquid  so we have been mixing it with a thick juice or something fizzy because it tastes terrible. We are letting her drink it  (and watching her like a hawk)  because apparently it doesn’t work as well if we put it through the tube. The whole process is such a pain in the ass (pardon the pun), she hates the taste of the laxative and it doesn’t help that the only thing she is allowed to drink is her ‘poop’ juice.

Last night, she was in a foul mood and simply refused to drink it. I couldn’t argue with her about it so I put it in fridge to try at a later time when she might be more responsive.

But then I woke up in the middle of the night in a complete daze to give her, her medication, and  I was so thirsty. I think you know where this is going…

I opened the fridge and saw the ice glass of cold of mountain dew, and eyes half shut, I chugged down the whole bloody glass…..

Two hours later…..HOLY CRAP!

Well at least we know- the poop juice works.

Well unfortunately St. Patrick’s day wasn’t lucky for us. No pot of gold, no leprechauns. Just one long night with one really sick kid.

After only a few hours of sleep the morning didn’t get bring anything better so instead of a quick trip in for radiation we ended up at the clinic for 6 hours of  IV fluids and IV anti nausea medication.

We saw our oncologist again today. We literally are becoming regulars and I am kind of sick of seeing her so much. We don’t even book appointments anymore and as soon as the booking clerk hears my voice on the phone, she knows who I am. “Come on over” she always says like I am a neighbor in need of a cup of sugar or something.

The good news is, we got a plan today.
#1-  increase blood pressure medication. Her blood pressure dipped as low as 63/31 today- so basically she’s barely alive and that is a problem.
#2  more angry steroid meds. Apparently the swelling is likely not coming down around the tumor. I hate that drug and so does Loggie. Not only does it make her mean, it makes her have moon face, which is terrible but it is part of the plan so we are going with it.

#3 Bi weekly check up’s  with occupational therapist to assess her risk for chocking. Today we learned how to swallow pills with chocolate pudding. Awesome. I have a feeling Logan will be hating chocolate pudding very soon.

She’s still not allowed to drink liquids (anyone mentions the slurpees and they are in big trouble). It is a serious pain in the ass to crush all her medications, dissolve them and put them down the nose hose- to be honest I get confused half way through sometimes at what I’ve given. Also, some medications are also not as effective when you do it this way  but we have a problem since we fear she could choke on the pills. Pudding seems to be the answer, as long was we watch her like a hawk while she is eating it.  Apparently pudding can cause pneumonia (well not exactly but the way she is swallowing liquid and food it is possible it could go into her lung). I didn’t even know it was possible to confuse your stomach with your lung. The things you learn in the cancer world.

#4- See the ophthalmologist (eye doctor) and audiologist (hearing) by the end of the week. Her vision seems worse- (I think they are secretly roping a second opinion in from the eye doctor check for tumor pressure). Did you know that a big majority of brain tumors can be seen during a routine eye exam? Me either- another cancer learning- get your eyes checked.  The audiologist  is just for a baseline measurement before we give any more radiation to her head. Apparently a fairly common side effect of radiation is hearing loss-or so we also learned today.

So that is ‘The Plan’. We are going to do all of the above and “hold off” on the MRI for now.

God only knows they don’t want to confuse the doctors anymore. In all fairness, they must know what they are doing. They fear is the MRI won’t give them any more info and might sway them to stop treatment. We are best to give the treatment a bit more time to do its job. Sounds fair.

They explained Logan’s brain and her tumor  as a “dog’s breakfast” again today. I am not sure I like the description. I’ve seen a dogs breakfast and it’s gross.

But despite the gross explanation of her brain- we have a plan to help fix it and a plan is good. I am a type A personality – I can’t stand being in limbo so I feel better knowing we have a few steps in place that we are going to try.

I also want to be clear, that despite my sad blogs of late, I am staying positive, WE…I should say…are all staying positive.

Sometimes positive just doesn’t look the way you all think it should. I have received numerous concerned messages from you all , and I want you to know- we are OK. Really we are.

 These are just some major bumps in the road. We are fearful, and grieving and less enthusiastic this time around. We also all have a little bit of a ‘poor me’ syndrome that comes and goes. I am pretty sure it is natural- or at least that is what my therapist tells me.

And the way I see it, if I was walking around all  ‘Polly-Anna Positive’  with my head up my ass- you’d have a lot more to be worried about. I fully understand the magnitude of our situation, and sometimes it hits me like a ton of bricks.

I will however, make a promise to you all here and now.

I may be sad for short periods of times, I may rant and I may cry and that might stress you out because you won’t know what to say or do- but I won’t stay in this mind set long.

I do know negative energy doesn’t serve us well right now- but it is part of this process and I’m going to honor that I need to feel all the feelings instead of letting them eat me up inside.

I am only human. 

We are moving on- from leprechauns and pots of gold and crappy sad posts to a plan.

  We are moving on to spring and celebrating Easter.  It is what we need- a little rebirth, resurrection of sorts to rise above this difficult time- or maybe what we need is just a little chocolate…wine and flowers.

Always wine.