Tim has told me, several times, that the hardest thing for him about having MM is having our daughter mixed up in this. He worries, as do I, about what effect it has on her, and what would happen to her life if MM takes him from us. Liv is a stoic type, just like Tim. She does not wear her emotions on her sleeve. She does not like to admit it if she's scared or nervous. She doesn't even like to admit she has a shy side. I wonder, sometimes, if she really is handling it as well as she seems to be or if she's just hiding her emotions very well. I spoke to a friend of mine about this recently. She has had MM for 12 years and I spent 5 days with her in a hotel, caring for her while she does a clinical trial that she had to stay close to the hospital for. I suppose no parent gets through this parenting deal without guilt. Add cancer to that mix and it's certainly worse and more complicated. You do your kid no favors if you don't discipline them and make your expectations clear. The world is NOT gonna give them a break because their parent has cancer or passed away. And you also don't want to raise them to be a victim or to use their bad fortune as a crutch or excuse the rest of their lives. But, there's also the part where we want to make their lives as good and normal and happy as possible, because, after all, they were dealt such a bad hand, and they were robbed of a normal childhood. And none of us wants to pass away and be remembered by our kids as a meanie. My friend is just wrapping up a month away from her son, where she missed his first day of high school and has had to try to handle things that came up via cell phone. She feels guilt over the days she's lost with him over the years, and the Dex issues that affected her moods when she was with him. But, she was and is fighting for her life. That's the hardest thing to do and trying to parent in between, well, there's no way that's not gonna be complicated and super hard.
I look back on my parenting and there were times I was so impatient. Sadly, sometimes the only way to learn to do something right is by doing it wrong the first time. With parenting, it's YOUR KID that pays the price for your learning curve. I had to raise my child while dealing with my own life-altering health problems, my husband's cancer diagnosis and all that has caused in the last 11 1/2 years, while going through menopause, while dealing with the pressures of owning a business and a rental home where tenants can be a royal pain in the ass. Then, of course, we had to deal with the huge disappointment of how Tim's family, and a few others, treated us and our estrangement from them because of that. It's not easy raising a kid in this day and age in the best of circumstances. We were handed a lot of bad circumstances. All I can say is that our daughter was and is loved, ferociously, by both of us and she knows it. She has had our time and attention since the day she was born. We did not have her to be an accessory to our wardrobe. We had her to be a part of our lives and so we could be a part of hers. We may not have gotten everything right in this parenting business, but we did do a lot of things really well. She was raised VERY differently than both Tim and I were. And many of those differences were for the better. We've also learned a whole lot in the last 20+ years, and when you know better, you do better. I think we're doing OK, under the circumstances. I try not to let the guilt of not being perfect at it eat me up. Life isn't perfect. It is, in fact, FAR from it.
I recently started seeing a therapist to try to deal with my worry habit. Due to all the bad luck in my life, I live with this feeling of dread that the next tragedy is just around the corner. My dad's stage 4 lung cancer diagnosis certainly was one of them. We just passed a year since we found out. He has a brain scan tomorrow and will get the results immediately afterward. I dread these appointments with him the most. It's just brutal. But, it's the constant worry about my kid that is really driving me crazy. She is naïve and does not think things through. It scares the hell out of me. I'm ruining my life with this worrying. I really am. Turns out, my new therapist is exactly like me and shakes her head sometimes when I talk because her daughter is also very similar to Liv, if not even worse. Her daughter is a daredevil and wants to swim with sharks. I don't think that's something I will have to worry about. Oh, I know all those cliché sayings they have about worrying. Of course, they all make perfect sense and they are 100% true. BUT, how does one stop?
Paula Dean used to be agoraphobic, something I know a lot about. She lost both her parents young and was in a bad marriage. When she started her business, she used to send her sons out to deliver the bagged lunches she made at home to pay the bills. She said that in order to get over that crippling agoraphobia, she had to accept her death, and even that of her sons. She had to let go of her fear of death completely and I guess she felt there was nothing worse that could happen than that so she stopped getting so uptight about everything else. I dunno. It worked for her, but, just as there are so many ways people react to stress and fear, I'm sure there are just as many ways to try to get over it. I saw this quote that said, "you can spend every day of the rest of your life worrying, and it's not gonna change a thing." I'm sure that's true. I am beginning to think that constant worry is almost like an OCD type problem. In some way, I think you feel that if you worry about it, maybe it won't happen or you can be prepared if it does. I think, somewhere in your mind, you think that if you DON'T worry about something, it's going to happen. None of this is true. I've even begun to realize that my family is so used to me doing all the worrying, that they don't think they have to do any. They are almost passing their worries off to me, like, "she'll handle it, she always does, so I won't worry about that." Great. I've become the chief executive officer of worry in my house with no one to delegate to and I'm sure I am largely to blame, because I don't want them to worry either. Worry is ruining my quality of life. It is robbing me of whatever joy is left in my life. So, I will continue to see my therapist and try to rein it in somehow. Worry should be a 4 letter word. It is truly toxic. It has made an enormous impact on my life. Time to figure out how to shut it down, at least enough to let some joy seep in.
Life is such a crap shoot. Random things happen every second. I don't consider myself an overly controlling person, but, it sure sucks to feel like you have no control at all. That's a hard place to get comfortable in.
Onward.
Tuesday, September 25, 2018
Wednesday, September 5, 2018
She's an upper classman
We have just returned from dropping our daughter off for her 3rd year of college. Surreal. Other parents have told me that this is the fastest 4 years of your life and they were not kidding. It seems like yesterday we were dropping her off for the first time, and it's been 2 years since that day. This next step starts with a whole bunch of new worries. She is not on campus anymore, with security guards and cameras all over the place. We moved her into a big house about 2 miles from her school, maybe a bit less. We are more concerned for her safety. It sure did not help that, on the news yesterday, there was a report of a man breaking into a college rental on Long Island and robbing them at gunpoint. Terrifying stuff. The locals know where the rentals are. Tim and I wound up grabbing a hotel room for 2 nights so we did not have to drive home in Labor Day traffic and also because Tim didn't have much work in for this week so he wanted a little breather. So much for rest and relaxation. His employee changed his college plans and texted us his 2 weeks notice. GREAT!!! It's really hard to find good help in this field and we had to go right into blasting word of mouth out to try to find someone. The stressors never take a vacation. And, there's something about getting ready to drop our daughter off and not being on campus that has had a tough affect on both of us for weeks now. Tim actually admitted to me yesterday that it's weighing very heavy on him and he's the one that usually takes everything in stride. I feel like I have to stop voicing my own concerns to him and start playing the role of cheerleader and I just don't feel cheery. Kids these days are so much more naïve than we were at their age. They spend every minute staring at their cell phone screens and are oblivious to everything going on around them. Just last night, we went back to her rental to drop off some things we'd bought and, out of 5 girls, not one of them thought to leave any lights on when they left to go to the campus for the day. The house was pitch black and the outside light was off. It has a spooky entrance, with high bushes lining both sides of the whole front walk. In fact, one girl was just getting home when we pulled up and she was so afraid to go in by herself, she sat in her car until my daughter got home so she didn't have to walk in alone. I was like, "LIV, ya gotta leave some lights on!" OY, these kids. Tim actually installed a locking doorknob on her bedroom door, but, she has a Jack and Jill bathroom so we couldn't totally secure her room. I know, crazy, but several of these girls have boyfriends who you know are gonna be sleeping there. It's a huge house, you know there are gonna be kids crashing there after parties too. I have to keep myself busy back home here or I am going to worry myself sick. On the bright side, she is so blissfully happy at her school. She has so many friends. Tim and I stopped to pick up food to go from a place before we came home and the guy that took care of us graduated from there last year and is now going for his masters and he not only knew her, he'd just hung out with her last night. You walk around campus with her and she knows SO many people. It makes things a bit easier to know how happy she is. I just wish I didn't spend my life wishing the time away. I do it for 2 reasons. I want relief from the worries and I desperately want both of us to be present at her graduation in 20 months. I'm sure it will seem like no time at all before I'm back here posting that she graduated. But, for now, it's back to empty nesting.
I guess, this being a myeloma blog, I should give that report too. Tim has continued to stay off Velcade. He took it from Feb to Dec of last year and wanted a break, mostly from the Dex, for the holidays. Well, luckily, his disease continues to behave in a lazy fashion and his numbers have moved at a snail's pace so he keeps getting a bit longer of a reprieve. His appointments went from 4 weeks to 6 weeks to now 2 months apart. We are blessed. It's a little scary being off treatment. His one doc didn't want him off, the other one is more laid back about it. So, for now, we coast, for as long as we can. Then, it will be back at it again.
Other than that, we're just looking forward to autumn in NJ, since the heat has been just awful here. We waited so long for summer to finally arrive, only to get tons of rain and blast furnace heat. The dog days of summer.
I guess, this being a myeloma blog, I should give that report too. Tim has continued to stay off Velcade. He took it from Feb to Dec of last year and wanted a break, mostly from the Dex, for the holidays. Well, luckily, his disease continues to behave in a lazy fashion and his numbers have moved at a snail's pace so he keeps getting a bit longer of a reprieve. His appointments went from 4 weeks to 6 weeks to now 2 months apart. We are blessed. It's a little scary being off treatment. His one doc didn't want him off, the other one is more laid back about it. So, for now, we coast, for as long as we can. Then, it will be back at it again.
Other than that, we're just looking forward to autumn in NJ, since the heat has been just awful here. We waited so long for summer to finally arrive, only to get tons of rain and blast furnace heat. The dog days of summer.
Thursday, June 21, 2018
Thursday, May 17, 2018
Current Situation
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.
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.
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