Easter 2020

I’m finding it hard to know how I am supposed to feel today. Normally, this is a day of celebration. That doesn’t feel right or possible today. Another myeloma friend, and I hate even saying it like that because myeloma should not define anyone, but Mike died the other day at 46 years old. Like Adina, he left a spouse and 2 teenage daughters. Corona virus took him from his family and this world. He was one of the sweetest, kindest men I have ever met. He deserved so much better, as did his family. There are others I know who are currently fighting this damn virus. My husband has 4 family members, 2 that are in the hospital now, one in very bad shape, and his sister and brother in law are recovering. We live in a “hotspot” of the disease, right across the river from NYC. In addition to all this, I spent the month of March in another life and death struggle with my dad and had to move my parents into an assisted living facility at the very worst time to do that. I put my family’s health, and lives, at risk in order to take care of him in the hospital and move them. As if that wasn’t bad enough, I have 2 sisters, who do not handle stress well, lash out at me in the middle of all this at a time when that was the last thing I or my family needed. Life looks very different right now from what it did just 6 weeks ago. Unimaginably different, when you consider everything that is going on.

I do not feel like celebrating. My family is fractured. People are sick and dying. Others are mourning the death of loved ones that took half their hearts with them when they left. Most everyone is living in fear right now of their own mortality and so many of the people I know have cancer so this virus is so much more risky for them. But, if there is one thing that I’ve learned in the 13+ years of living with the grief of my husband’s MM diagnosis, it is this……being morose and depressed does not help any of those people. In fact, those people would probably be screaming at us to be grateful for what we DON’T have wrong in our lives on this day. I am, by no means, being dismissive of the feelings of people who are lonely and depressed in this lockdown, or those who mourn or are fighting for their lives. I am, instead, saying that we owe it to them to be grateful for what we have today. There is no damn sense in good people losing their lives in their 20’s, 30’s, 40’s etc. But when we can’t find sense, the only option left is to find meaning.

If you can breathe today without assistance, you are blessed. If you can get up and walk across your house or back yard, you are blessed. If you have someone to love that loves you, you are blessed. If you have food to eat and money to pay your bills, you are blessed. There are so many things that you might have going right in your life that others do not. We can pray for those people and we can help where we can. But, just like I don’t think you honor a person who dies by spending the rest of your life mourning, I don’t think we honor or help anyone by being so morose that we sit around catatonic about all that is wrong with the world.

So, today, I am going to concentrate of what is right with my life. And, I am going to try to push out the grief and fear as much as possible. I am going to try to find the flowers among the rubble. I am going to dwell on my family’s blessings.

Happy Easter, Passover, and spring to y’all!!!

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Adina

Yesterday, Adina died. She was only 45, diagnosed 5+ years ago. She leaves behind a great husband and 2 teenage daughters that need their mom. She fought like crazy to stay here. Her myeloma refused to allow that. Her story is a very difficult one. When she first fell ill, her doctor did not take her seriously. Sadly, this is very common, especially with women, and I’ve had this happen many times myself. Too many doctors try to blame stress or anxiety for women’s ailments. Her doctor did not run blood tests or do any real testing, to my knowledge, to rule out illnesses. Finally, I cannot remember if she went to the hospital or her doctor, but she told whichever that she was dying and she was not leaving until they found out what was wrong with her. She was right. She was dying. She was in renal failure and had to start dialysis. She was then diagnosed with myeloma. She was, understandably so, furious at her doctor, who just said, “we don’t expect to see myeloma in someone your age.”

For the next 5+ years, Adina fought like hell to stay here for her family and try to keep their family’s farm and finances solvent. But, like the truly amazing person she is, she also found a way to help others and make the world a better place. She started a myeloma support group in her area because there was none for folks like her and others fighting MM. With SO MUCH already on her plate, and while fighting for her own life, she found the time and energy to fill this need and give to others. That’s how this beautiful woman rolled. She always tried to make the world a better place. She jumped in and did what she could.

On Feb 1st, she posted on Facebook that she was stopping treatment. She was out of viable options and the new treatment worked for a very short time and then stopped. She was tired of feeling so sick from the drugs, not getting much help from them, and being stuck in the hospital instead of spending time with her family. These are the final words of that post:

“I wish you all the best, please go out in the world and make a difference, be a good person, live a life worth living.”

Adina did those things, but not nearly as long as she wanted and deserved to. If there is one thing I have seen, in the 13 years that I’ve been immersed in the world of myeloma, it’s that myeloma seems to choose the best people, the most giving people. It’s so damn unfair. Why can’t it land on the selfish jerks of the world? I know it sounds awful to say something like that. But, seeing the most awesome people live with this and be struck down in the prime of their lives is painful and doesn’t make one bit of sense.

Adina, you will never be forgotten. You made a difference.

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Life of a caregiver

Today, I read a post written by a caregiver/wife. I’m not sure what her husband has, but he is dying. It was posted on a general spouse-caregiver facebook page. The last line of her post was, “and forgive yourself for not always being the best version of yourself.” Oh boy, did that strike a chord with me. The truth is, being put into an insanely stressful situation does so many things to you. It can show you how strong you are. It can show you how weak you can be. It can bring out your best traits, but it can also bring out your worst. You operate on adrenaline, sometimes intense fear. Your marriage is tested CONSTANTLY. I remember, way back in the beginning of our journey, thinking that just when fate took me out at the knees, and I was feeling as weak, overwhelmed, and close to a nervous breakdown as I’ve ever been, I had to try to function at the highest level ever because my husband’s life depended on it. My daughter was also depending on me to keep it together. I felt like I was putting a mask on every morning when I woke up. It was a mask that said, “I’m OK, I got this, I am strong, this isn’t gonna beat me, he’s gonna be OK, things are gonna work out.” I did not believe any of those things, but I had to fake it so that my husband and our daughter thought I did. It was exhausting. Trying to be strong for SOOOO long and for everyone else is absolutely exhausting. It still is. And, just like you don’t get to be 54 years old (in 3 days) and not have some regrets about things you said and did over all those years, you surely don’t live under the intense pressure of living with cancer and not have regrets. Things you said, or did, or didn’t do. Yup. They’re there. And you know from listening to widows and widowers that the guilt you feel now doesn’t hold a candle to the guilt you will feel later if/when you become one yourself.

How do we forgive ourselves? How many times have you told someone else to forgive themselves? that what they did wasn’t that bad and understandable under their circumstances? Probably lots of times. But, are you able to forgive yourself in the same manner you council others to? If you’re like me, the answer is no. This is something I’ve been working on in myself. I remember when Tim was first diagnosed, I felt bad for any and every cross word I’d ever said to him. I apologized to him for it and he said, “I’m not holding it against you.” He’d done the same. We’ve been together almost 34 years now, over 12 of them living under the cancer cloud, in addition to plenty of other stressors and disappointments in our lives. We are human and this is a relationship between 2 people who are not carbon copies of each other, both dealing with a LOT of stress. Life is complicated. Messy even. Perfection doesn’t exist here. So, we have to stop expecting it of ourselves. We have to understand that there are always going to be times in our lives when we stray a bit from the person we really want to be. We are not as patient as we’d like to be, as smart, as understanding. We don’t know all the answers. We don’t say and do the perfect things at all times. Unfortunately, we don’t get to go back and undo some of the real bloopers that make us cringe every time we remember them, as much as we want to be able to go back and do better. So, the only other options are beat your freaking brains in about something you can’t change anyway, OR

FORGIVE YOURSELF FOR NOT ALWAYS BEING THE BEST VERSION OF YOURSELF.

Because, honestly, we would not expect perfection in ANYONE living under the amount of stress that we’re living under. We have to give ourselves a break and understand that we are doing the best we can and none of this is a perfect science. It’s life. And life is messy. And it sure isn’t perfect. And nobody, N-O-B-O-D-Y is ever the best version of themselves all of the time.

#forgiveness

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Our baby is 21

It’s been a week of ups and downs, mostly downs, which I will try not to delve too far into details about because this post will get too darned depressing. In my almost 54 years, there have been many times I have asked God for things that were not granted; sometimes begged would be a better word. A little over 12 years ago, that begging/praying was that the testing they were doing on my husband would not show cancer. We all know how that one played out. Over the next months/years, the prayer/begging turned to, “please don’t let her lose her dad while in her formative years” and “please don’t deny him the chance to see her grow up.” (2 very well known MM specialists assured us he only had a few years left.) Well, for once (oh maybe there were a few more times in 53+ years) my prayers were answered. Her junior year in college is finished but she has the rental house until 5/19. She invited us down to her birthday party, before they went to the bar, where she would not have to use her fake ID for the first time. (insert eye roll here) We walked in the door to see her tan and tall (5’5″ but wearing heals) and all gorgeous and made up. We were both taken aback. Where did our little girl go? The hardest thing about her being at college is not witnessing all the wonderful things happening in her life. At least we got to be part of this one. We are proud of her. Several boys came up to shake our hands and tell us how much they thought of our daughter. Girls hugged us that we don’t even know and it was plain to see that our kid has made a lot of awesome friends at college. It was a happy night. Oh, and they all loved the dog. Our Lacey girl was a big hit.

But, and there’s always a “but” isn’t there? This is all so overshadowed this week, and always is really, with myeloma hanging over our heads. This week, it was the lives of others around us that made happiness feel so damn fragile. The day before we left to go see her, we were at a baseball game to support friends whose son killed himself on New Year’s day. He was 21. They were throwing out the first pitch in his honor. This was a gorgeous, talented, amazing young man who had everything going for him, except for a vicious on-again, off-again girlfriend who was determined to make his life hell. Now, all we can do is be there for his parents and sister to show that he is not forgotten and that we are here. I hug them, HARD, when I see them, so they know I mean it. The day we got home, yesterday, I get a text from my friend that a woman we know died suddenly on Tuesday, right when her 21 year old twins are about to graduate college. Then, today, my sister calls me crying. Her friend’s 17 year old son was diagnosed with leukemia at the end of Jan. and has been in the hospital ever since. Instead of getting ready to go to his junior prom, he was told things took a turn and he’s going to have to have a bone marrow transplant after all. My sister had to run to her friend’s house with a towel around her head because her friend “broke” sitting in her car in the driveway. She went over to hold her while she wailed to the heavens. She called out from work and is going to spend the afternoon with her. She told me she saw and heard things she will take to her grave. A grieving parent breaking after being strong for over 3 months. This is faith shattering stuff.

I got off the phone and thought about all that has happened to these families and realized that their lives entered a twilight zone, a place where nothing made sense anymore, just as our lives did on a Thursday back in March of 2007. A place where you cannot ever feel solid ground under your feet, where life is not fair or just, where you cannot even trust feeling happy because you wonder what’s next. A place where you feel guilty for being happy because you know others have not seen their kid graduate high school or turn 21. A place where “friends” and even family members desert you because they don’t want your problems messing up their lives. A place where you can’t feel 100% joyful anymore. I hate the term, “new normal” so much. I know that it’s something people tell newly diagnosed or traumatized folks so that they can hold out hope that their lives will normalize in some way, but, I’m sorry, this is just not normal. People being struck down in their prime, and children no less, getting cancer or dying is just not effing normal!!!!!! And feeling guilty for feeling a shred of joy is not normal either.

Before I went down to celebrate our daughter’s birthday, I slipped a ring back on my finger that I wore for years but haven’t in some time. I bought it while on vacation. The words, “live in the moment” are carved into it. In over 12 years, I have not been able to learn to do that very well. For one thing, I am a worrier and always seem to fret about the future and “what ifs.” I feel jinxed after so many bad things happened in my life and always seem to be wondering when the other shoe will drop. Also, as an “empath” I get very upset by other people’s pain. Sometimes, I have to stop and remind myself that I cannot take on everyone else’s grief whilst struggling under my own. But, you just don’t turn off caring for others when you have a big heart. However, I have to take full advantage of this answered prayer as long as I can. I have to try to live in that moment and soak it up.

SO, OUR KID IS 21. WE MADE IT!!! WE WERE BOTH HERE TO RAISE HER TO ADULTHOOD. WE ARE PROUD OF WHO SHE IS. MORE IMPORTANTLY, I THINK SHE IS PROUD OF WHO SHE IS. SO I’M GONNA BE HAPPY ABOUT THIS. WE DESERVE IT AND WE FOUGHT DAMN HARD FOR IT TOO !!!

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12 YEARS

What to say that hasn’t already been said on this blog? It’s odd to say we feel lucky. My husband being diagnosed with an “incurable” cancer at 43 hardly comes off as feeling like a blessing. But, everything is relative. I have been immersed in the world of MM and cancer all these years and, sadly, I know many who did not get 12 years, or did not get to see their child(ren) into adulthood. I have friends who are struggling greatly right now. Tim has been luckier than most in this predicament, there is no doubt about that. After 8 years, 9 months, and one day, (but who’s counting), of no treatment, he went back on Velcade and Dex in Feb of 2017. After about 10 months, he was really struggling trying to run his business, what with all the chemo brain and dex effects. He asked for a little drug holiday over the holiday season, and, one month turned into two, then three, etc. He has now been off treatment for 15 months. He’s going for check-ups every 2 months and this last time, his M-spike and other numbers actually all ticked DOWN a bit, instead of up. M-spike stands at .32 right now. His doctor really loves him and is always so happy to be able to say, “you’re fine, get outta here and go home, see ya in a couple of months.” But, what we really do is just talk to him about personal stuff, his vacations and such, and visit for a few. Yes, we feel blessed, and lucky. We know it could have been so much worse and, indeed, the doctors were quite pessimistic way back then.

My husband’s mental strength continues to amaze me. He refuses to let MM define him and he does not feel sorry for himself. I don’t know how he does it. In our support group last month, several patients said that they find the mental part harder than the physical part. Our next group speaker is a therapist who will talk about that, so, good timing on that booking.

All in all, life goes along pretty “normally” if not predictably. Maybe not other folks’ normal, but our version of normal. I’m still not taking care of myself well enough. Tim looks fabulous and I look like I’m aging double time. As usual, we are stuck still having to “make a living” instead of doing things that would bring us much more joy in the time we have left together. The goals for self-care or weekend trips have fallen flat, for sure. One thing that we are very happy about is that our daughter is doing so awesome in college. She LOVES her school and is thriving so much. We miss her like crazy but it sure helps to see how blissfully happy she is and how much she has grown. Tim was just saying last night that his doc told him he would not see her graduate high school, but now he feels confident he will see her graduate college in May of 2020 (I actually count off the months) and is setting his sights on walking her down the aisle one day. From his mouth to God’s ears.

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A new year

Warning, depressing post. New Year’s Eve has never been a favorite holiday of mine. I don’t hate it. It just seems to be the one holiday that brings to light the most how fast time is flying by. It always feels like we just welcomed the year in not long ago and it’s already over. And that speed really gets scarier the older I get. Obviously, my husband having MM and my dad having stage 4 lung cancer only makes it worse. Reading of MM or other cancer deaths and friends running out of options, my heart just breaks every time. I enter a new year with trepidation, not wonder and joy. Some people put these posts on Facebook about the new year, looking forward to it, or feeling ready for it, saying BRING IT ON!! I found myself hoping that this next year would not be THAT bad, and that I would be able to hold up under whatever trials lay ahead. Not feeling all that mighty these days. I went right into doctor visits starting after the holiday. Yesterday, the 2nd, a visit to the cancer center with my dad. The chem screen machines broke down and he could not get his Keytruda. He still has a cold anyway so, probably just as well that he waits another week. He and my mom did not make it to my house Christmas Eve or my sister’s house Christmas Day. As much as we are grateful our parents are still here, it stings that they have missed holidays this past year. Today, I will go with Tim back to the cancer center. I’ve already seen some of his results online. He will either be restarting chemo today, or very soon. We still have not found a new employee and he’s working his brains out. Adding doctor visits and side effects to this is not going to help matters. We did not win the lottery Tuesday night, so, he can’t retire. How I wish he could. Tomorrow, I will see my cardiologist and am praying that my blood pressure meds don’t have to be adjusted or changed. Still having issues tolerating the last change.

BUT, all this faded into the backround this morning. I woke up, grabbed my cell phone, logged onto facebook and learned that our friends’ kind, hard-working, handsome son died on New Years Day. He was just 21. I do not know what happened. Being 21 and in a college frat and it happening on New Year’s day, I automatically think partying played a role. But, I don’t know. I cannot wrap my brain around this, I just can’t. How cruel life is. They will never know another truly joyous moment, I am sure. What do you say to someone who is going to cremate their child in a few days? You cannot tell them it’s going to be alright. Life is never going to be alright for them again.

Our daughter went down with 8 of her friends to party at a friend’s frat house by her college for New Year’s Eve. We warn her, over and over, “PLEASE don’t overdo the drinking!!! Please be careful.” These kids, they still don’t think this will happen to them. I did not exhale until her car pulled back into our driveway the next day.

I don’t know what took Kyle from this world. What I do know, is that it’s hard to feel hopeful from where I sit right now. It really is. I know that the pain my husband and I are about to witness and feel at the upcoming wake and funeral will be burned into our minds forever, but cannot even begin to compare to what his mom, dad, and sister will feel for the rest of their lives. I also know that I feel powerless to do a damn thing to help this poor family. And that powerless feeling is one that I’ve been dealing with a long time being a caregiver for people I love with incurable cancers. It doesn’t get any easier.

All we can do is try to support those we love in whatever small ways we can muster. What else is there?  God, Fate, Life, Chance…….they will all have their say, one way or another. Loving others and being loved back, and trying to help, are the only ways to cushion the blows that life throws at us.

This year has not started off well, and all I can do is hope to have some moments of joy and love in 2019.

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Parenting under the cancer cloud

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.

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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.

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June 21, 2018

Some days, it’s just all too much. Today was one of those days. 😢

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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.

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