I find roller coasters scary but I’ve ridden a good number of them. I hate that feeling of anticipation before the big drop and I hate that feeling of losing my stomach. After the scariness is over and the adrenaline settles, that’s when I enjoy the ride. But this one that we are currently on is terrifying. If you’ve been following my dad’s cancer story there has been underlying lying theme of an emotional cancer coaster, well the peaks and drops and inversions continue.
I’ve been trying to write this update for months. I have 3 different drafts with various updates since October. I have a retrospective on 2016 with hope and optimism for 2017, which doesn’t seem relevant at this point now that we are 5 months into the new year. Every time I write, I get deflated or distracted or something has changed. So here’s another attempt.
All these updates have exclusively been about my dad, and I’d like to start by offering perspective from the caregivers, primarily my devoted mother. I would imagine that being married to anyone with an illness is tough. Being married for nearly 48 years to your high school sweetheart with terminal cancer is a whole different ballgame.
She’s by his side, managing and attending countless appointments, driving in and out of Boston fighting rush hour traffic, figuring out which hospital he needs to be at and what time, navigating the halls between these different hospitals, remembering where the car is parked, all while witnessing the person she loves the most in so much pain; and she does it without question. But 2 weeks ago after countless sleepless nights, my mom was unrecognizable, and she’s not the one with cancer. My beautiful mom looked and sounded awful (sorry Mom). And this scared the crap out of me and my sisters.
It was a tough week of emotions and appointments. Wednesday and Thursday they were in Baltimore for an arduous bone marrow biopsy and an appointment with another of his brilliant oncologists, followed by the surgical insertion of a Hickman line back after getting back to Boston on Friday; those three days put them both through the ringer.
From my understanding, a bone marrow biopsy typically takes about 10 to 20 minutes. But imagine this scenario: My mom is in the waiting room in an unfamiliar hospital and an hour has passed; she sits waiting and worrying because no one has let her know that the biopsy is still underway. Little does she know that my dad is still on the table because the numerous chemotherapies over the last several years have rendered his bones and marrow weak, thus making this biopsy a challenge. The doctor kept offering to stop, and my dad fights through the pain, pushing back saying “no, we need to do this.” This takes so much strength and his ability to be mentally stronger than the pain is remarkable. A lot of people would have given up at this point.
The following day they met with the oncologist who gave the go-ahead and approved the next therapy which will take place in Germany… more on this in a minute. They fly back to Boston Thursday afternoon to be back at BWH Friday morning for the for the Hickman catheter. This surgery is an insertion of a tube that put into his chest, tunneled under his skin towards his heart and ultimately replaces the administration of chemotherapies through regular IV, like in his hands or arm—all of which his treatments have been done this way without a port over the last 10 or so years.
He’s never wanted a catheter/port like this put in because he didn’t want the constant reminder every morning that he had cancer. So when this happened last week it took a toll on him. This port has to be flushed daily, and the dressing needs to be changed weekly. So thank God for my big sister Laurie as she’s has stepped in and has been flushing the lines daily.
Circling back to the caregivers, here’s Laurie. Being the first born she’s always played a special role in our family, and here she’s been forced into a position of care not only for her parents, but for her “little” sisters. She may be a bit domineering at times, which is not a bad thing, this is only because she has the most caring heart in the world and wants help and fix what she can. She’s also been to a number of appointments, by my parent’s side, holding their hands, crying and asking questions. The weight of managing all of this (on top of being an incredible full time working mom, wife, sister and friend) would break anyone, but she’s so strong despite what she may think. I am so very thankful that she has been our sounding board and outlet to cry, and I can only hope she feels its reciprocated.
So these past 2 weeks have been brutal. One of the days I was at my folks house last week I saw my dad in a different place than I have ever seen. The man who has remained so very very strong was in an indescribable amount of pain and exhaustion. Seeing him that day broke me. At one point I said to my husband, “I think my Dad is dying.” And please understand that I am not one to be over-dramatic, it was a scary effing week, but this is the scary truth.
Day 6 at my laptop trying to get this written, enjoying my coffee out of a mug that reads “think happy, be happy” a mantra that I try to live by, so let me find the positive in all this pain. Here’s what’s coming, and what we are hopeful is going to work on extending his life and making him more comfortable. Please keep in mind that I’m his daughter and not in the medical field in any way shape or form, so this my interpretation of what these drugs or treatments do.
Over the last couple weeks, he has undergone 2 different kinds radiation, the first (Radium 223) was to address the bone mets/tumors living in his hips and on his spine. The results from that has shown disease regression, meaning they aren’t growing and potentially shrinking. The second kind is conventional radiation for palliative care, I wouldn’t say that this has worked, but he’s a little bit better than his worst days.
In addition to radiation last week he started undergoing immunotherapy Sipuleucel-T, a regimented treatment where he needs to be in Boston by 7AM sharp for a blood aphaeresis or collection, where the blood plasma then is packed up and flown to Atlanta and basically turned into “super blood” where it boosts up his own immunities, and is then shipped back to Boston by Thursday morning where the super blood is infused back into his body by 9AM. This cycle will happen three times over the next month. This is ultimately the reason for the Hickman port I mentioned above. He and my mom won’t be alone for these appointments, god knows the spend enough time alone together, staring at each other; so as Laurie has been to the first round, Karen and I will be there for the subsequent collections and infusions.
The immunotherapy will work in conjunction with the therapy that will be administered in Germany, the hope is that the immunotherapy will boost his immune system so it will be armed to fight. Firstly, the reason they are going to Germany is because this is a cutting edge therapy that has not yet been FDA approved. Secondly, there are very few therapies available to relapsed metastatic castration resistant prostate cancer (mCRPC) patients. My Dad has tried the most popular chemo and other therapies available in the U.S. This new therapy coming out of nuclear medicine in Germany looks promising for late-stage aggressive metastatic prostate cancer.
I’m still learning about this therapy Lu177 PSMA (lutetium-177-labeled PSMA-617) We know that he will be in Germany for a week or so sometime in June and during that week there are a significant amount of tests and scans that take place before, during and after the treatment is administered. And when he gets the radionuclide therapy he stays in his room without visitors for 48 hours (I’m assuming it’s because this radioactive nuclear stuff needs to be contained). After 48 hours he’ll meet with his doctor to review the treatment and discuss next steps. The good thing is that patients typically tolerate the treatment fairly well most commonly leave with only fatigue and nausea as side effects. Laurie, Karen and I will be heading to Germany in some capacity come June to be there by my mom and Dad’s side, and we are going to make the best of this family “vacation” as it might be our last. This could be the first of 3 or 4 treatments, or he’ll be the rockstar that we know and respond so well to the first treatment that he won’t need to go back to Germany. So send good ju-ju for that outcome!
So this is what we do, we remain hopeful. My dad has so much to live for, which is an incredible pressure on him, he’s fighting to stay alive for us. Dad, I can’t thank you enough for that. I cherish every minute that my three babies spend and I get to spend with you. Regardless of the pain that you are in you will still play hide and seek with my littles and snuggle my newborn. They are going to be incredible little humans because of the love that you give to them. I can confidently speak on my behalf of Karen and Laurie that they feel the same way. And I know this because you and Mom have created a family that is worth fighting for, we are all in this together. And to Mom, thanks for being the behind the scenes strength that doesn’t get the attention it needs, we couldn’t get through this without you.
L to R: Robbie (2), Maddie (5) holding Conor (0), Victoria (2), Norah (3), Catie (5) and Colin (2).
A lot of people ask, “what can I do?” My response is this: be there. Show up. Call. Text. Hug. Pray. I can’t tell you if we’ll be up to talk, but knowing that you are there helps more than you know. If something in your life doesn’t make you happy, fix it or let it go. Be thankful that this isn’t your story. Going through all this we’ve realized what is important, and have been able to move past what is not. Life is too short. Cherish the moments you do have with the people you love, make the best of them, say I love you.