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
Monday, August 5, 2019
Friday, May 10, 2019
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 !!!
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 !!!
Friday, March 8, 2019
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.
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.
Thursday, January 3, 2019
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.
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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