Back home

Pablo was finally released from the hospital on Friday. He promised his doctor that he would RELAX and NOT GET STRESSED. The next couple of weeks are crucial in his recovery. Pablo needs to relax because when he does too much he ends up getting sick and it is crucial that he keep down all the medication that he is taking. And speaking of medication, Pablo's doctor got him 'the drug card' and now each prescription costs us only $2. I am still pretty pissed that we didn't get this drug card before. It could have saved us hundreds of dollars. Pablo's doctor sent in a HUGE list of medication to our pharmacy on Friday. So huge that it took the pharmacist a full day to get it ready. Enough medication for 3-6 months (depending on how long he needs to take each).

Pablo's doctor wants him supervised for the next week or so. Due to the radiation and subsequent brain swelling, Pablo's been having bad dizzy spells and weakness. He's even supposed to sit while showering. 

Pablo will be seeing his doctor at the end of October to check his progress and maybe by then he'll be well enough (and off enough drugs) to start working again and life can be back to normal. I just realized that the end of October marks 7.5 months since all this started. That is a very long time....

Pablo and his mask

Pablo having 'fun' with his radiation mask now that radiation is over

NO MORE RADIATION!!!!!!!!!!!!

Today was Pablo's last radiation treatment!!! YIPPEE!!!

He got to keep his mask. He's got it with him in his hospital room. It's creepy but whatever makes him happy.

The long awaited MRI is scheduled for tomorrow. His doctors think that his recent and ongoing spasms are caused by all over brain swelling. The MRI will determine if this is the case. He's had brain swelling in the tumour area but the swelling might have spread to more areas of the brain.

Not sure exactly when he can come home but the last we've heard is late this week.

All sorts of crap

Really I wanted to title this post WTF because I've been asking myself that a whole lot lately. Pablo has been in the hospital since Friday morning. His weird spasm-like symptoms have moved their way up and his chest and neck and even his cheeks are spasming now. No word so far on what the hell is going on. The MRI that he's been waiting for hasn't happened. Weekends are a bad time to be admitted since very little gets accomplished...

Last Thursday, Isabella started getting a cold and it has progressively gotten worse and now she has little voice left and she sounds like crap. Simon was healthy when I put him to bed last night and then just after he fell asleep he woke up crying and woke up every half hour ALL NIGHT LONG. I couldn't quite tell what was wrong with him - nothing obvious - so I thought maybe he had a sore throat. This morning he has a bad cold. and I've wiped his nose a million times.

I figured Isabella would catch something at school (and pass it on within 12 hours to Simon) but I didn't think it would happen this quick. I mean give me a freaking break already.

Pablo, the kids and I really miss you.

A side effect of radiation or all the meds...

Yesterday morning, Pablo woke up and could barely walk. His legs were aching from his hips right down to his toes. From his hips to his knees it felt like muscle spasms and from his knees down it felt like his legs were going to snap in two. He couldn't have his legs touch each other when he was laying down. This leg pain was making him tense up so much that his abdomen is killing him from tightening up for the last 24 hours. Pablo went for his 3rd last treatment yesterday and stayed a few hours longer to discuss this leg pain with his pain specialist and with the oncologist on duty. No one knew why this was happening and the only recommendation was for Pablo to stop taking the Lyrica that he was recently prescribed.

This morning his legs are still quite shaky and he's going to go in for his treatment extra early today so that he can discuss this more with the doctors.One of the nurses drew some blood before we left the hospital yesterday so who knows what that will show...

I had to bring Simon to the hospital yesterday and he was a big hit! Am I ever glad I took this week off work...

UPDATE: Pablo just called and they are admitting him for the next 3-4 days. They've determined that there is something wrong with his kidneys. They want to get to the bottom of the kidney issue and the leg issue. This really sucks.

UPDATE #2: Pablo is going to have an hour long MRI tonight of his head and spine. The doctors want to make sure that he doesn't have a spinal lesion. Did I mention that this really sucks?

What's been going on...

Sunday night, Pablo was running down the basement stairs and jumped the last two steps. He hit his scarline on the edge of the basement ceiling and blacked out for a few seconds and hit the floor. That is where I found him screaming in pain and a big lump forming on his head. So off to the hospital he went to have his head checked out. They took him in right away and did a CT scan which showed nothing more than what his scan from a few days prior had shown. Just a bunch of swelling and blood blockages. They sent Pablo home and told him to be more careful.

Pablo is now taking 4 mg of morphine every 2-3 hours. To help with headaches. Actually, he is supposed to take it whether or not he has a headache. That is alot of morphine - on top of everything else he's taking...

I took the rest of this week off work. I am tired. We are all tired. A big thank you to my mom for watching the kids alot lately but I realize everyone is tired, me included. Pablo is getting sicker and sleeping less and that much more drugged up and it is hard for me to leave him with the kids to go to work. And now that Isabella is in school, she has to be out of the house by 7:45 am.

Pablo has 5 more radiation treatments to go. I am taking him to his treatment this afternoon.

Did I mention how drained and tired we all are?

There has been no work done on the trailer in ages. Hence why I haven't given any trailer updates. I've had no free time. When I've had some free time, I've been too tired. Maybe soon I can make time....

Isabella is off at school right now. Day 2 and she was just as excited to go today as she was for day 1. YAY!

Ahhhh...the meds (day 7 is missing)

Yesterday, today and tomorrow

Pablo went for treatment yesterday - he still wasn't feeling quite right. His oncologist ordered a CT scan and it showed quite a bit of brain swelling and blood blockage. This is what is causing his headaches to be quite painful. Supposedly, only about 5-10% of patients with meningiomas like Pablo's, will have these kinds of side effects from the radiation. Pablo's tumour isn't attached to the brain and these side effects he's having are more common with tumours that are attached to the brain. Pablo might find out more today at his treatment about a course of action to deal with what is going on.

Pablo got a morphine injection after his treatment yesterday and I think this is going to be done after every treatment.

The Decadron he's taking for the swelling has been bumped up again and he is now taking 4 mg, three times a day. This means I'm going to have to lock all the kitchen cabinets and hide the ice cream...

Once Pablo's treatment is over, his oncologist said that it could take around 4 weeks to recover from all this (longer than normal because of the side effects).

Pablo went to the drugstore to get four medications. It cost $400.

Tomorrow is a big day - Isabella's first day of school. It's also Isabella's first time taking the school bus. We're going to take pictures of her getting on the bus and hopefully the camera will hide my tears. She has school for 2.5 hours and then we go pick her up down the street at the bus stop. I have a feeling it's going to be a really long 2.5 hours for me and it'll seem like 10 minutes for Isabella.

In other news for tomorrow...Leigh, of Marvelous Kiddo, is on vacation for the week and has asked people to guest post while she's gone. I was one of the lucky ones that she thought of to ask and my post will be appearing on her blog tomorrow! YAY!

Bad day for Pablo

Late afternoon yesterday, Pablo started getting a really bad piercing headache. When he woke up this morning, it was still there. His radiation treatment was scheduled for 8:50 this morning. He called me at work at 9:20 to say that he was feeling really strange - disoriented and like he was about to black out. He hadn't had his treatment yet. The doctors wanted to find out what was wrong first. They drew a bunch of blood and told him to hang tight. I left work at noon to meet him at the hospital. The problem was that his brain had swelled so they increased his Decadron (anti-swelling med) to 4mg a day. He got another prescription for Oxycocet for the headache and the doctor said that if he still felt like crap tomorrow, they'll do a CT scan of his head to find out what area the swelling was coming from. We stayed at the hospital till 4 because they still wanted Pablo to have his radiation treatment. Unfortunately, his radiation machine broke down early in the morning and by 4, they said they still weren't sure when it would be up and running properly. We were exhausted and were happy to just go pick up the kids from my parents' and get home.

Now I'm making sloppy joes because it's quick and yummy and if I put it in a tortilla and call it a taco, Isabella will eat it.

Pablo's hair loss to date

I took a photo tonight of the radiation side of Pablo's head. The hair loss seems to be keeping to a straight line.

Today and tomorrow

I'm exhausted and need to get the monkeys to bed and then myself to bed so I'll talk about today and tomorrow real quick. Today Pablo went to his radiation treatment and when he got to the car to leave the hospital, he got sick. Right next to the car. Then he got sick again when he got home. Luckily the kids were at my parents' house so Pablo was able to rest. He feels like crap. I think he has 13 or 14 treatments left...(yesterday's was cancelled - the Tomo machine was broken)

Tomorrow is Isabella's first day of junior kindergarten!!! Well kind of. We get to take her to school tomorrow and it's orientation day where we get to meet her teacher and see the classroom, etc (I took the day off work). Then next Thursday, Isabella goes to school by herself. She doesn't have school the following day (the 17th) but Tuesday the 21st marks her first official week of school. She is so excited and I am so nervous. I'm going to cry like a freaking baby. I'm going to worry about her and I'm going to miss her like crazy. She is going to have a blast. Doesn't really make me any less nervous but I'll get over it. I just need time. LOL! Am I lame or what?!?!?!

More than halfway there...

Pablo is just over the halfway mark of radiation treatments. YAY! Hair loss area has grown a bit. I'll try to remember to take photos...

The side effect of radiation that Pablo was dreading...

Hair loss. It has started. Above and to the left of Pablo's ear and they told him at the hospital that the hair loss will gradually move upwards. Here is a photo of the missing hair:

And here is a photo of the other side of his head:

Pablo decided he didn't want to watch the hair loss patch get bigger so here is what he did to solve the problem:

And because I'm too lazy to start a new post, here a bunch of other photos I took:

In plain sight...

The technicians of Pablo's TomoTherapy machine (radiation) told him that he could bring in some stickers to put inside the machine so that he had something to look at while he was getting his treatment. Pablo and Isabella picked out a fairy sticker and one that said 'Booo' (for her nickname of course). The Dora sticker was already in there (they bring kids from the children's hospital next door for TomoTherapy treatment).

The LONG list of meds

Here is a list of meds that Pablo is on as of today (he got 2 more prescriptions today which were not ridiculously expensive, thank goodness):

valproic acid (anti-seizure)
rhovane (to help Pablo sleep)
melatonine (to help Pablo sleep)
ondansetron (anti-nausea)
ranitidine (reduces stomach acid)
dexamethasone (anti-swelling)
cymbalta (anti-depressant)
oxycocet (pain med for headaches)
lorazepam (to help Pablo sleep)
muscle relaxant

Info Pablo got today at treatment:

Pablo was told today that he isn't sick enough to get in-home care.
Patients who get in-home care get to see social workers.
Pablo was given the name of a social worker anyway.
The hospital admitted that we should have been told about government funding for his medication A LONG TIME AGO.
Pablo might be able to get rides to and from his appointments 2-3 days a week through the cancer center.
A doctor saw him after his treatment today (again, NOT his oncologist) and he told Pablo that he shouldn't be driving anymore after this week.

More hospital crap

Pablo unexpectedly saw his oncologist today (he is supposed to see him only on Tuesdays). In regards to the 'misinformation', he told Pablo that the misinformation was explained in that 'it could happen' not that 'this is what is happening'. Pablo didn't hear it this way - he understood the information as actual, not as a possibility. I'm pissed I wasn't there. This is why it is always good to have a second person at appointments WHEN INFORMATION (OF ANY KIND) IS GIVEN.

THEN, Pablo spoke to a nurse in regards to government funding for his medication (as hinted to by our pharmacist). The nurse asked if we had spoken to a social worker at the cancer center and Pablo said no, he had never seen a social worker during any of this. The nurse was surprised to hear that we had not seen a social worker, that we had not heard about in-home health care or the ride program that would help get Pablo to and from his radiation treatment appointments. UNREAL. The nurse put an EMERGENCY RUSH on the whole social worker thing and Pablo was promised this would get resolved by his appointment tomorrow...

Why, again, we were speechless

I went with Pablo to his radiation treatment on Friday afternoon. (No update about the 'misinformation'). Pablo has been vomiting the last few days - not alot but he did mention it to the nurse after his treatment. His head has been burning a bit too so we were told to buy a 'Glaxal Base' lotion. We spoke to a doctor on duty Friday and he recommended that Pablo go back on Decadron - which is an anti-swelling medication. Pablo took this for a few weeks after his brain surgery and the doctor said that he should go back on it since radiation can cause some brain swelling. For the nausea, the doctor prescribed something and when we got to the pharmacy and saw the amount of this anti-nausea medication, well, IT MADE US NAUSEOUS. Thankfully, we get 80% back through my benefits but GIVE ME A BREAK. See ridiculous amount below (second 'prescription' total):

I have never at one time paid so much for anything at a pharmacy. That anti-nausea medication is called Ondansetron and that amount is for 40 PILLS. THEY BETTER FREAKING WORK OR WE WANT A REFUND.

Thank you all for your comments on the last post. This has been a really rough week and the support we've gotten from everybody has really helped us get through yet another rough patch.

O M G

Pablo just finished up today's treatment and his oncologist wanted to speak to him.

Turns out, the doctor (not his oncologist) that told him the news Monday that things are going bad, that his tumour looks like cancer, that he'll need a biopsy and that he might only have 9 - 12 months to live...

WAS SPEAKING TO THE WRONG FUCKING PATIENT !!!!!!!!!!

Pablo doesn't even need a biopsy. Treatment is going REALLY well.

Now I am in tears AGAIN.
Happy tears but O M G I can't take any more of this.

Why my husband is so strong...

On Monday, Pablo went to his radiation treatment. When he was about to leave the radiation room, a doctor walked in and told him to sit down. She proceeded to tell him that his tumour is spreading and it is now believed to be cancerous. The only way to know for sure is to do a biopsy. This doctor then told him that he'll most likely need chemotherapy and possibly another surgery. The real kicker - she said that if this doesn't work, Pablo will have 9 - 12 months to live.

Pablo told me this many hours after he found out.
He didn't want me to know.
He didn't want me to worry.
He didn't want me to be upset.

And again I lost it.
It was April 16 - April 26 all over again.
I never wanted to feel like that again...to be that sad, angry, pissed, depressed, hopeless.

The doctor that told Pablo this news was not his oncologist.

Every Tuesday, Pablo is supposed to see his oncologist after his treatment.
Pablo wanted him to confirm or deny this news and he wanted to hear it alone.
So I went to work today and IT SUCKED. I felt like shit all day. (Thanks Dianne for trying to cheer me up!)

Pablo spoke to his oncologist and here is what the oncologist confirmed:
The oncologist does want Pablo to have a biopsy.
They are under the suspicion that what is left of the tumour might now be cancerous.
He confirmed that the doctor overreacted yesterday and he apologized and said it wouldn't happen again.
Once the biopsy is done, then we'll know where to go from there...

Again, in the words of my late Nonna (grandmother):
FACKINSANAMABEECH
(cause I'm too tired to come up with all the expletives I'd like to put here...)

Radiation treatment #3

Yeah, it didn't happen. Something about the tomotherapy machine not working and they ended up being a few hours behind by the time Pablo got to the hospital for his 2pm appointment. They cancelled treatment for today and he'll have one added to the end. Which I believe falls on Isabella's first day of school. Fantastic.

The side effect of radiation they never told us about...

This photo should be on a box of Honeycombs:

(Pablo took this photo of himself right after his treatment today)

Treatment today went the same as yesterday - no side effects or feeling any worse than normal.