On Facebook, which I spend WAY too much time on, there is a thing folks do where they post a picture and comment that this is their “current situation.” Usually, it’s a pic of them on some tropical beach with a slushy, rum-spiked, umbrella-adorned drink in their hand, and maybe their feet in the picture with the ocean in the backround as they lay on a beach lounge chair snapping the pic. The last “current situation” pic I posted on FB was a pic of my home and the view down the block during a big snow storm. Well, even that seems more fun than what my current situation report will be today. But, that’s life, that’s reality, “that’s just the way it is.” (Going to see Bruce Hornsby next month and that song lyric comes to mind a lot.)
My current situation is a double cancer battle update. So, firstly, Tim. Tim is doing well, thank GOD. Last I posted, he was taking a month off chemo so he could feel his best over the Christmas and New Year holidays. Well, that short hiatus has stretched to 5 months and still goes on today. His numbers are hardly budging. Oh, they are moving, and that direction is up, but, it’s VEEEEEEEEERRRRYYY slow. He sees two different docs at his appointments. The one told us she is really nervous keeping him off treatment. She’s afraid that his MM could get “traction” and suddenly turn aggressive and then may not respond as well when he goes back on treatment. She told us in April that, “if you were my family member, I would recommend you be on treatment. We can lower the Dex if that’s really causing problems, but I think you should be on something.” It’s scary to hear that and I know it could be true. At his next appointment in May, we all agreed he would go back on. The choice was given to continue Velcade or try Ninlaro, but, with so much work coming in for Tim, he did not want to risk new side effects and the unknown of Ninlaro, even though it would save him a trip to the cancer center every week, so he was all set to do Velcade again. But, we changed the appointment by one day to be able to get to a softball game we wanted to see. And, we wound up with his other doctor, who took one look at his labs, saw his m-spike only went from .14 to .15 in 6 weeks, and said, “go home, you’re fine, you don’t need to start today.” Now, while we are really thrilled to hear that, even he has mentioned that there’s a chance his MM could get stronger going on and off treatment. In Tim’s case, it’s really because of the history of how his disease has behaved in the past, that makes this doctor feel a little less nervous about letting him stay off. But, there is always that chance that it will start to misbehave. I suppose, actually I know, that chance exists with MM even when you’re on chemo.
It’s a hard call, as they all are. Your life and your bone and kidney health hang in the balance and you surely do NOT want to sacrifice any of that. But, that’s what we’re doing, staying off for now. Going back in 7 weeks and we will see where we are at then. I imagine, as long as there are no surprises, he may likely be able to avoid chemo for the summer. We feel blessed, and scared, but mostly blessed.
Now, onto my Dad. Sadly, his update is not as uplifting. After 6 cycles of chemo, which he tolerated very well, and a gamma knife radiation treatment to get rid of 3 small mets in his brain, things were looking good. He had gained back most of the weight he’d lost. He felt good, and his spirits, well, they are so good, I don’t know how he does it. Maybe he’s putting on the game face around us “kids” but, he really seems OK. His lung cancer doc said he would stay off chemo about 2-3 months now, as his scans looked good, he considered him stable, and I guess, unlike MM, they don’t keep lung cancer patients on continuous treatment if they don’t have to. As the doc said, “we don’t want to kill you with the chemo.” Then, we got blind-sided. He has brain MRI’s every 2 months to follow up after the gamma knife he had in November. January’s scans were great. Since the chemo had worked so well, we were totally not expecting to hear what we did after the March MRI. Both the neuro-oncologist and the radiation oncologist, an old friend of my Dad’s, walked into the exam room at the same time. My immediate thought was, “oh shit, this isn’t good.” And it wasn’t. They found 10 new brain mets. It was devastating to hear. They scheduled another gamma knife treatment, but warned us that the MRI they do after they place the head frame on him could find more, and if it was too many more, he would not be a candidate for gamma knife anymore and would have to go for whole head radiation. Well, that’s what happened. Got the anesthesia, had the frame attached, did the MRI, and they found 10 more new ones. SHIT again. They put him right in to have the face mask molded to start whole brain radiation. He started the next day and did 10 days of treatments. His MRI to check out how that worked is in a week. We have now consulted with the other doc who does the immunotherapy and clinical trials since the chemo did not stop the lung from sending new mets to the brain. He will start Keytruda, along with a trial drug that goes after another target his cancer is positive for, in about 2 weeks. He told, me, “what choice do I have? I have to go aggressive.” His hair fell out and his scalp is peeling from the radiation. It’s sad to see him look like that. His physical appearance has changed so much since last summer.
I don’t have to tell anyone who may read this how devastating it is to be going through this, as most are living on this cancer roller coaster too. There is a good chance the whole brain radiation is going to cause memory issues for my dad. That’s going to be rough. My mom has been dealing with dementia for some years now. She can’t be his caregiver. I’m not sure if she could even pick up the differences if he starts to slip cognitively. I had hoped they were on their way to selling their condo and moving closer to me and the cancer center, and into an assisted living facility. But, my last conversation with my Dad did not sound like that was forthcoming. This creates even more stress for me. They live about an hour away. My dad drives fine now but that could change at any time. How he feels could change at any time too. My Mom gets VERY nervous if he’s not feeling well. She knows that she is not really capable of helping much and getting nervous only scrambles her thoughts even more. There’s also the problem that they live right down the road from the hospital that seriously mis-managed his case at diagnosis in Sept. and if anything were to happen to him, he would find himself back there while his doctors and MUCH better care are here in HUMC. No ambulance is going to drive 20+ miles away to bring him to Hackensack. They will bring him to the closest ER.
I am torn. On the one hand, I want him to live out his life as he wants to. On the other, there is a common theme in my life that has brought me SO much grief. And that is this……people never listen to me, and, when the consequences of their not-so-great decisions hit, I seem to be the one who has to pick up the pieces and figure it all out. I REALLY don’t want that to happen in this case. What can I do? I can’t force him. My mother has always been dead-set against winding up in assisted living or a nursing home, but, there will be no choice in her situation, at some point. When my father first got his diagnosis, it seemed he realized he had to get this done so that his kids did not have to do it. My one sister pointed out months ago, that going into an assisted living situation with my father would be much less stressful on her. It’s true. She would feel safer and be able to get used to the situation without being alone. Somewhere along the line, it seems my dad changed his mind. It sounded to me like he will put this off and probably never make the move and I know that will be much harder on all involved.
Again, the Bruce Hornsby line, “that’s just the way it is.” I’ve gotta just take things as they come. As a good friend said to me a few weeks ago, “no matter what comes your way, you always figure it out.” I just wish, sometimes,(all the time, really) that it all didn’t have to be the hard way.
So, that’s the current situation. Oh, and last but not least, our daughter is home from her sophomore year at college. I cannot believe that. 2 years done. It’s surreal. She got the waitressing job back at the café she worked in last summer, so that’s good. It’s great to have her home. As good as Tim and I have done being empty nesters, we miss her, and being a part of her daily life. It’s a welcome distraction for us.
That’s a wrap, I guess. Hopefully, I will have some better current situations to report this summer.