Today we met the Radiation Oncologist and her resident, a very nice young man who bowed to us repeatedly much to my amusement (Can’t be Canadian – our doctors do not bow to anyone!).
First we accompanied the nurse back to the exam rooms. Mathew’s leg hurt him too much to stand up for his weight-check so she skipped that today (thank you!). Bloodwork then followed; something we didn’t know about and weren’t prepared for. By that I mean there was no Ativan available for you-know-who, so he underwent the procedure unwillingly, grumpy and not nearly as pleasant as the resident doctor. Once the vials of blood were collected the same nurse then brought us the prescriptions we need to fill out and bring with us on Monday.
All 7 of them.
For side effects.
Along with the prescriptions comes a friendly medical benefits coordinator who liaises with the patients, their families, the pharmacies, drug companies and government. Her job is to wade through the red tape and paperwork on our behalf to ensure as much of prescriptions are covered as possible. This is not the chemotherapy drugs ~ the government pays for them. This is for those other ones, the “supporting care” prescriptions paid for by your medicare plan or by you.
The coordinator takes you aside to a private room to go over the prescriptions and coverage. There is a bed handy for fainting if necessary. Some of these drugs are outrageously expensive; in fact two of Mathew’s cost $4,400 and $1,600 a MONTH each! These are the most expensive on the list but dang that is pricey!
A bit of fortune finally smiled on us today – Mathew is on disability social assistance (welfare). This includes health benefits and it means the government will foot the bill for those supporting care prescriptions! *whew* My health care plan has limits, both yearly and lifetime caps plus copays so I am extremely gratified that my role is limited to legal drug mule.
Those same 2 expensive prescriptions are injections. Even better, guess who gives them to Mathew? John and I do! Yay! Wait until Mathew hears about this! Double yaaay! We will learn how to give injections on Monday although I am way ahead of John on this one. I had a blood clot in my leg 4 years ago and had to inject myself with Heparin (Lovenox) for a few days until the warfarin (Coumadin) anticoagulant medication reached a prescribed level in my blood.
Today we also received the list of chemo drugs that make up Mathew’s treatment.
There are 5 chemo drugs he will receive. They are:
1. Ifosfamide (IFEX)
2. Vincristine (ONCOVIN)
3. DOXOrubicin (ADRIAMYCIN). This one is red, yes RED in colour!
4. Cyclophosphamide (CYTOXAN)
5. Etoposide Injection (VEPESID)
Remember how the port was going to be inserted Monday then chemo started immediately after?
Ha! Ha! Ha! Someone had a better idea; knock Mathew out before putting the port in! Now the plan is to put the port in under general anesthesia first thing in the morning, let Mathew wake up and then give him his first chemo cocktail. Someone proactively accommodated Mathew’s needs ~ how awesome is THAT? Hats off to whomever realized the status quo needed changing before the power behind Mathew’s arms and legs bruised a few egos (among other things)!
Here is a Wikipedia link and picture about ports
The hospital is smart to realize that Mathew doesn’t play by their rules or jump through their hoops. He isn’t interested in behaving or “helping the system” by presenting himself in a scared, submissive manner. If he is scared or in pain then he is very vocal and direct in what isn’t going to happen. If the situation weren’t so serious it would actually be funny. I wouldn’t dare act like him yet he gets away with it AND they change as much as possible to help him out!!
Now if only Mathew could wave that magic wand and zap waiting out the door too… that 20% action and 80% wait at the hospital sucks! Hurry for the appointment but wait for the specialist. Hurry for the procedure but wait to be called for your turn. Hurry for this test but…well, you guessed it. Hurry up and wait. The bane of every hospital visitor or patient!
Ranting aside, the radiologist detailed her treatment plan for Mathew. Ideally it will start in about 10-12 weeks and he will receive a total of between 25-27 doses of radiation. This will be administered 5 days a week for 5- 6 consecutive weeks. Before the first treatment an MRI will determine the exact location to zap the tumour and a mould made to assist Mathew in holding perfectly still during the 10 minutes of radiation. There will be more prescriptions to fill for the possible side effects then too.
Unfortunately his dosage and length of radiation is not the optimum amount for treating Ewing’s Sarcoma. The Radiologist put it this way, “the spinal cord tolerance is much lower than the tumour needs”. When this course of radiation is done Mathew will have already reached his maximum lifetime dosage. The cancer has to be treated with the best and most aggressive treatment NOW to kill it.
I want the chemo and radiation to blast that fucker into permanent oblivion.