The Big C-Word

I obviously spend a lot of time in this blog talking about my 'C-Word' - Crohn's - and how it affects my life. This entry is going to be a little bit different, as I'm gonna take some time to talk about a much bigger 'C-Word'... Cancer. Specifically, my dad's metastatic Prostate Cancer, and what's been happening with him the last couple months.

I've mentioned before that when it comes to my Crohn's, my main trigger is stress... but a particular kind of stress. I can handle 'tight timelines, high-expectations' stress. Its when I'm faced with the kind of stress that comes from having no feeling of control in a situation... that's when I feel it.

So I guess it shouldn't surprise anyone that I've been experiencing symptoms a bit more lately, as my dad's health took a major downturn the last couple months.

You might remember my dad from a previous entry... proud smile and signature train conductor hat.

Dad was initially diagnosed with Prostate Cancer around 10 years ago. His oncologist went the local therapy route, treating mostly (if not entirely) with surgery. I don't recall Dad receiving any systemic therapy... you know, meds or chemo that could have preventing the cancer from spreading. 

It was about this time two years ago that he received the metastatic diagnosis. When his back began hurting, he insisted that his doctor check his PSA levels (have it checked, gentlemen!) and there was a sharp increase since his last test. The cancer had spread to his bones, predominantly to his spine. When a cancer has spread beyond nodal involvement, its considered metastatic. Its classified as Stage 4, and there is no cure. There will be no remission... the goal of therapy is prolonging life without sacrificing quality.

In the last two years, dad has been on various treatments, including hormone therapy, endocrine therapy (three different kinds), chemo, and radiation. The cancer has been breathtakingly aggressive for a traditionally slow-moving disease. Despite the progression of the cancer, Dad had been hanging in there. Even now, after everything that has happened the last couple months, I have to say that he's hanging in there... just in a different way. I'll try my best to summarize what an emotional rollercoaster the last couple months have been for him and our family.

The man has been through a lot... he's had skin cancer, throat cancer, and prostate cancer.

Early January or so, dad complained of severe neck pain and felt like he was about to pass out. Mandy took him to the local hospital, where an MRI (supposedly) showed nothing different, cancer-wise. They took no further action on his complaints of neck/head pain, but transferred him to a different hospital when he complained of numbness/tingling in his limbs. Another MRI was done, and they immediately tell mom he needs emergency surgery. The cancer had eaten away at the bones in his neck to the point where his head had literally no support... the doctor said he was "essentially a bobble-head". Metal rods were inserted into his neck to help support his head. Our family spent the night with the very real possibility that dad would wake up a quadriplegic hanging over our heads.

The next day, I was on the treadmill, going for a 'stress-relief run', when Angie sent the text that dad had been moving. It was small, but he had feeling and movement in his limbs. It was the first time I actually cried during all this.

He was in that hospital for at least a couple of weeks, with various ups and downs. The surgery was a success in that his neck now had support... he's in a C-collar that will likely never come off, and he'll never have full motion in his neck. He could move, but he couldn't support his own weight, so he couldn't get out of bed... which only made his muscles weaker. He was breathing fine at first, but then the swelling and a lot of mucus started to block his airways, so they had to perform a tracheostomy, installing a tube in his neck. He can't speak with it in, which has led to some very frustrating games of charades... especially since he doesn't have the motor skills necessary to write or accurately point. He's very good at rolling his eyes and making it clear when we've read his lips wrong, however.

At one point we were told he was doing well, and would be sent to a rehab facility to build his strength back up... shortly after, the doctors were saying he's too weak, and maybe hospice would be the better option (that changed back a few days later). Dad was adamant about not going through intense rehab (he's already in enough pain), but would try gentler physical therapy. There were points where he hadn't slept for more than an hour or two over the course of a few days... yet he almost seemed to fight off sleep. The trach caused more swelling in his throat, so he had a PEG inserted, feeding him through a tube in his stomach. At first we held out hope of some sort of at-home care, but its become very apparent that will likely never be the case, as he needs too much equipment and care to make it happen.

He has his good days and his bad days, as I'm sure a lot of people in this situation would. On his good days, he's coherent, somewhat talkative (we can occasionally cover the trach so he can rasp out some words) and engaged in his exercises. On his bad days, he can't get comfortable, snaps and rolls his eyes, and constantly asks when his next round of pain meds is. Its frustrating and exhausting for everyone. Between the good and the bad, the ups and the downs, our family is getting emotional whiplash.

At this point, he's in a long-term care facility. They give him some bed exercises to do, and have helped him build some strength, as well as improve his coordination. The trach isn't necessarily permanent, but likely won't be coming out any time soon. Our hope is that he improves enough to take part in Angie's wedding in August.

Through it all, Dad has made it clear that he has the will to live and keep pushing, but his body can't cooperate. His body (specifically his core) was so weak going into the surgery, that he hasn't been able to recover at the normal rate. Of course, it doesn't help that whatever progress he makes may be negated by the spreading cancer.

Its enough to make anyone think about their own body, and how it might react in a similar situation. A couple years ago, I was asked by a family friend, "Why do you make all that effort and do all those runs?", and my response was, "Because I spent two weeks in the hospital with no food/water, but less than two months later, I was crossing the finish line of a half marathon... beating both of my sisters, to boot."(Sorry Mandy and Angie, I'm still proud of that, even though Angie insists it was because she had bronchitis.) Its been all the more motivating to stay in shape, knowing that moving now may be what keeps me moving in the future.

Team 'Bob's Mob', June 2019

We're going to once again be participating in the Zero Prostate Cancer Run/Walk in Hartford this coming June. We're hoping by that point we can get dad in a wheelchair and have him lead Bob's Mob. If you've gotten through all this (and it was a long blog entry, I know), consider joining us for the walk, or donating. You can join our team or donate by clicking here. We'd love to have you, whether you've known Dad your whole life, or will be meeting him for the first time at the race. Last year we were just barely edged out of being the largest team (beaten only by their main sponsor!), and it gave Dad so much joy to hold that trophy. I think the little joys will make all the difference for him (and us) at this point.