When last we paused in this Tale of Crappy Cancer and Chemo, it was Sunday Day 7, and Ben had just begun vomiting. He ultimately became very sick that day and vomited for hours after I published that post. He was also in an unbearable amount of pain.
I contacted the Cancer Agency and they hooked me up quickly with some more drugs. The vomiting may have been from methadone withdrawal, due to missing one or more doses. As the nurse said yesterday…. “people usually only make that mistake once.”
So that brings us to yesterday. Monday. Day 8. Chemo “top up” day and end of cycle one. I woke up just as Ben was getting out of bed in the morning, and one glance in his direction and my heart was broken. He was very upset, and not for the obvious reasons. Unfortunately he discovered he has now lost some of his hearing due to that damn Cisplatin (the main chemo drug). Not “just” tinnitus, which was already driving him nuts, but actual loss of hearing. Ben had decided to do a little early morning Google research, and was shattered to read that the hearing loss is permanent. For some of us that might not be the end of the world in the grand scheme of what’s happening, but for Ben it is an indescribable, horrific loss.
Music is everything to Ben. Playing guitar. Attending concerts. Music is his hobby, his passion, his bliss in life.
Just imagine your life after your passion is ripped away from you. You can no longer run, or read, or water ski, or golf, or paint, or knit, or garden, or ride a motorcycle, or travel, or whatever it is that you love to do. Gone. Thats it. Done. In an instant.
Rae and Ben
I emailed our oncologist who asked us to come see him when we arrived for chemo on Monday. We met with Dr K and Ben explained what was going on, and in a nutshell he told Dr K he no longer wishes to continue with the chemo. The hearing loss is too much for him to take, and likely the cisplatin will damage his hearing further if he continues. On top of that it is also completely kicking the shit out of him. He has barely moved for a week, and quite frankly the effects seemed to worsen for him as time went on, instead of getting better. Dr K agreed that the Cisplatin does not seem to be the drug of choice for Ben. He said that even though hearing loss is a possible side effect of cisplatin, it “never” actually happens. (Ha. Wrong.) So clearly it is not the drug for Ben.
Having said that, the combination of drugs that Ben is receiving (cisplatin and gemcitabine) are considered the “gold standard” of treatment for this fucking nightmare of a rare cancer that is kicking the shit out of My Love. The combination of those two drugs is the best there currently is. Anywhere. So, if Ben can’t take one of them, where do we go from here?
I asked Dr K about POG (Personalized Onco-Genomics). That clinical trial is closed, but regardless he is still asking and still trying to get Ben in. Some of you may have read about this a couple of months ago:
In a nutshell, a Vancouver woman had stage IV terminal cancer with tumours wrapped around her spine. Within weeks of receiving this treatment she had no sign of disease. While that sounds awesome, we have been cautioned that she literally won the lottery with those results. Dr K says that POG is the future of oncology, but it is very new and no one expected it to work like it did for her. Others have not been so lucky. Still, I reminded Dr K that in a backwards sort of way, Ben “won” the lottery already, considering the odds of getting this type of cancer in the first place. And then he “won” it again with this whole hearing loss thing that supposedly “never” actually happens to people. So why shouldn’t he REALLY win it, by being the next one in the POG trial with no sign of disease. Right?
So Ben finished his round one of chemo, because the “top up” involved a dose of gemcitabine, not cisplatin. Barb paid us a quick visit and brought us a little pick me up. Note the Starbucks coffee. Thanks Barb.
We left the hospital with several new prescriptions and a promise that the oncology team will be discussing Ben’s next best option over the next two weeks. They said they wanted to do some more research and put their heads together to figure out what is best. We meet again with Dr. K on August 6th, and then the next chemo treatment (whatever that will be) remains scheduled for August 10th.
Tuesday was a better day. Ben was tired and nauseous from the chemo but that is to be expected. Its the hearing problems that are the worst right now. Not just the loss of hearing, but the sounds he hears and his inability to differentiate sounds. I am hoping that because he only had one dose of cisplatin, that perhaps his hearing might restore itself in time.
Cisplatin is an asshole of a drug.
One bright light today….the pain doctor called and let Ben know that it has been decided that he will receive a treatment where they will cement the fracture in his pelvis. That will help with the pain, and they will also do a nerve block on him. Yay. Little bits of good news are, well….good.
Tonight Ben was very briefly able to get up to do this:
Thats right. That is Ben and Zak enjoying a moment out back by the fire. How I truly appreciate the small things now.
Hug your families. xo
PS. Just an added note regarding POG. Friends and family should know that even if Dr K is able to get Ben into that trial, his case is much different from the woman who shows no sign of disease. Ben would have to submit to another biopsy, and then scientists would have to figure out which are the significant mutations. Then they would have to figure out what those mutations respond to, if anything. Then there would be the question, “does a drug(s) exist that would stop those particular mutations?”
I think that is a simplified explanation. Barb can probably explain better. Anyway, I say that not to discourage, but I don’t want to put out false ideas of a cure. Having said that, I will now focus on the hope that Ben will finally win the “good” lottery.