The news this week was grim. After getting through a rough round #1 of radioembolization to the right lobe of the liver, round #2 to the left is not to be. While there was some progress seen from the process (reduced SUV values on the biggest tumors) there were also numerous new tumors in both the right and left that were not there on the last scan in Oct. And the nasty little disease has decided to take up residence in some fairly significant boney areas--left shoulder blade, left upper arm, ribs, vertebrae. So while we've had bad news before, this is the mother lode of bad news. It's in your bones, kid. There's nothing we can do for you, kid. Get your affairs in order, kid.
Fuck it anyway. If it were just me, I'd be tempted to be somewhat thankful that the nightmare will be ending shortly. But I can never, ever get to that point because I have a girlie that needs me. A teenager that will be devastated, and will need to figure out the rest of her life without either parent.
The thought of it makes me sick to my stomach. She has been my everything, and I feel so damn guilty for leaving her with this load of shit.
I find myself wishing there was an owners manual, a users guide of sorts, to go to for reference on how to die. What should I be doing a few months out? A few weeks out? Is it too early to sell all my shit? Where will I live if I sell my house? Who's going to take my pain in the ass OCD dog that never stops moving? Um, I guess I should consider disability now? Who wants to spend their last weeks on earth going to work? But do I really want to sit home alone all day?
Yep, I need a self-help book on this topic. How To Die in 10 Easy Steps. Can't find it on Amazon.
Saturday, January 2, 2016
Saturday, September 19, 2015
He's Gone
In what seems like an instant, he is gone. Like a magic act, he's disappeared from my life. Many pieces of him remain--clothes, glasses, tools, golf clubs, that damn motorcycle that won't sell. But the heart and spirit of him are gone. What's left is just stuff. Stuff that I wish wasn't here because it just reminds me of him.
I knew it wouldn't be easy, but I didn't really understand the depths of the pain involved in losing someone. My whole body hurts. I want to scream and cry but I don't. I go about the business of living. I go to work, come home exhausted. I feel bad because I was inadequate to anyone I've known that's lost someone close to them. I try to suppress the rage that I feel about his last days of life--how unfair that someone so strong should die so weak. I try not to hate all the bastards that abandoned us. The "friends" and family that disappeared because it was too hard for THEM.
Fuck you.
I try not to resent the entire world--moving on as if nothing happened. As if he didn't matter.
He did matter. He shaped my entire adult life. Now it's an open chasm.
During the last round of immmunotherapy treatment (read: lots of drugs), I dreamed that we were dust ghosts, like humans made of paper mache'. And walking along, he just went POOF and disappeared. I try to forget that in my dream I followed suit just a little further down the path.
I knew it wouldn't be easy, but I didn't really understand the depths of the pain involved in losing someone. My whole body hurts. I want to scream and cry but I don't. I go about the business of living. I go to work, come home exhausted. I feel bad because I was inadequate to anyone I've known that's lost someone close to them. I try to suppress the rage that I feel about his last days of life--how unfair that someone so strong should die so weak. I try not to hate all the bastards that abandoned us. The "friends" and family that disappeared because it was too hard for THEM.
Fuck you.
I try not to resent the entire world--moving on as if nothing happened. As if he didn't matter.
He did matter. He shaped my entire adult life. Now it's an open chasm.
During the last round of immmunotherapy treatment (read: lots of drugs), I dreamed that we were dust ghosts, like humans made of paper mache'. And walking along, he just went POOF and disappeared. I try to forget that in my dream I followed suit just a little further down the path.
Tuesday, April 21, 2015
Dry and cracked
It occurred to me that this is an apt portrayal of my existence right now. The landscape is pretty barren; everything is dry around me. But I'm still here and still green--thanks to sunshine that keeps peeking through and the occasional refreshing shower. I'm thankful every day for my blessings--every ray and every drop.
Tuesday, March 10, 2015
Life Goes On
Do I have any readers left? Thought I'd better post an update before I forgot my password. My apologies for disappearing for months at a time...seems like just yesterday I was sitting at this computer attempting to explain the upheaval of being in a dual-cancer home.
So much has happened; don't really know where to start. I'll revert to my business mode of bullet points for the sake of brevity.
So much has happened; don't really know where to start. I'll revert to my business mode of bullet points for the sake of brevity.
- Mid October thru mid November I spent in-patient at the NIH (National Institutes of Health), the first participant in a new immunotherapy clinical trial--a protocol for a specific genetic mutation from HPV related cancers. I fully intended to document the process here, because it's really quite fascinating and because I really believe that immunotherapy is the future of cancer treatment. But the reality of the experience was that I felt so crappy for so long that I couldn't even stand to look at a computer screen, let alone try to relay the experience in a positive light. Suffice to say that when I finally returned home and recovered, I literally felt like I had died and come back to life. That being said, the tough road is one I would gladly travel down again because it gave me HOPE! And although subsequent scans have determined that the wonderous new T cells within me weren't quite enough to cure me and won't save me from the fate of this disease, I have no regrets. I feel better than I have in a long time and because of that (my) cancer is not always front and center in my consciousness.
- My nephew and his wife lost their precious little boy during the holidays. Cancer robs another family of their loving circle; hopes and dreams die an agonizing death when a child dies. The grief that these young parents are dealing with is heartbreaking, and has rocked my faith in the grace of a heavenly entity.
- Days, weeks and months have gone by and I stand as a bystander watching my husband go from a robust male to a shadow of what he used to be. It's painful to watch and as much as I try to be an advocate, it's frustratingly fruitless. I have come to realize I still love him very much; I'm scared of what life will be like without him, and I wish that we had done more to be the perfect mates to each other earlier in our many years together.
Sunday, October 5, 2014
The Unthinkable
Since most of the readers of this relatively lame cancer blog are strangers to me, you'd have no reason to know that I married someone who is 12 years older than I am. We also waited for about 10 years to have a baby together, so I was 34 and he 46 when the whirlwind we call the girly arrived.
She continues to be the light of our lives; the glue that has held us together for at least all of her 16 years. She is bright and funny, beautiful and caring. And for years, I proclaimed the wisdom of waiting until you're old enough to afford and appreciate them before you bring children into the world. And because my husband was older, and oh--just happened to have a long family history of lung cancer--I always assumed that in the end it would be her and I, alone against the world.
When my cancer moved from a passing concern to an ever present monster in the room, she clung to the thought that it would be her and her dad--somehow managing to live without me doing everything for them (guilty--aren't all moms, at least of my generation?).
She is now living the nightmare of knowing that not just her momma, but both of her parents are dealing with a terminal cancer diagnosis.
You see, the prostate cancer was the least of our worries. The recurrent anemia and overwhelming fatigue was finally nailed down as being related to a mass in his small intestine that, upon removal and biopsy, was determined to be metastatic lung cancer. A matching mass in the lower lobe of the lung and just for kicks, a coordinating spot already living and growing on the hip bone.
So over the past few weeks, this picture has gone from hazy and grainy to brilliantly clear.
Absolutely crystal fucking clear. If you know anything about cancer, you know that this level of metastasis rules out surgery, rules out radiation. Do no pass go, do not collect $100. Go directly to a chemo chair. A fate I wouldn't wish on my worst enemy, let alone on my best friend and the salvation that was to be the keeper of my girly when I throw in the towel. Stage 4 lung cancer is not curable, especially if you don't have one of the two gene mutations that can be quickly arrested with an effective new drug, and especially if the "titch" of cancer has already meandered through your bloodstream and taken up residence in far flung locations.
I can't even find the words to explain the devastation. It's not the knowledge that he will have a tough, ugly fight that in the end most likely won't end like we want it to, nor is it the knowledge that I will either be right before him or right after him. We're grown adults; we've had a terrific life. But the heart wrenching knowledge that we're leaving our beautiful girly behind in this world at such a (potentially) young and tender age is so painful that the moment it enters the brain, you push it back down under the surface quickly lest it make you nuts.
I feel like I've won the lottery. Some rotten lottery no one really wants to win. Congratulations--your family is the grand prize winner in the Cancer Lottery! Deal with it! Tell all your friends! Get ready for the looks of pity (BOTH of them!), the rude comments (OMG, what is in the water there?), the condescending opinions (Hmm, former smokers, aren't you?) Tired of all that already, so we hide out. We tell only those people who absolutely need to know. We continue to live our lives like we always have, ignoring the monster when we can. For now we can get by with it. But we know that so many choices, so many decisions, so many actions we really don't want to take, are looming. Will need to be dealt with. Sooner or later.
She continues to be the light of our lives; the glue that has held us together for at least all of her 16 years. She is bright and funny, beautiful and caring. And for years, I proclaimed the wisdom of waiting until you're old enough to afford and appreciate them before you bring children into the world. And because my husband was older, and oh--just happened to have a long family history of lung cancer--I always assumed that in the end it would be her and I, alone against the world.
When my cancer moved from a passing concern to an ever present monster in the room, she clung to the thought that it would be her and her dad--somehow managing to live without me doing everything for them (guilty--aren't all moms, at least of my generation?).
She is now living the nightmare of knowing that not just her momma, but both of her parents are dealing with a terminal cancer diagnosis.
You see, the prostate cancer was the least of our worries. The recurrent anemia and overwhelming fatigue was finally nailed down as being related to a mass in his small intestine that, upon removal and biopsy, was determined to be metastatic lung cancer. A matching mass in the lower lobe of the lung and just for kicks, a coordinating spot already living and growing on the hip bone.
So over the past few weeks, this picture has gone from hazy and grainy to brilliantly clear.
Absolutely crystal fucking clear. If you know anything about cancer, you know that this level of metastasis rules out surgery, rules out radiation. Do no pass go, do not collect $100. Go directly to a chemo chair. A fate I wouldn't wish on my worst enemy, let alone on my best friend and the salvation that was to be the keeper of my girly when I throw in the towel. Stage 4 lung cancer is not curable, especially if you don't have one of the two gene mutations that can be quickly arrested with an effective new drug, and especially if the "titch" of cancer has already meandered through your bloodstream and taken up residence in far flung locations.
I can't even find the words to explain the devastation. It's not the knowledge that he will have a tough, ugly fight that in the end most likely won't end like we want it to, nor is it the knowledge that I will either be right before him or right after him. We're grown adults; we've had a terrific life. But the heart wrenching knowledge that we're leaving our beautiful girly behind in this world at such a (potentially) young and tender age is so painful that the moment it enters the brain, you push it back down under the surface quickly lest it make you nuts.
I feel like I've won the lottery. Some rotten lottery no one really wants to win. Congratulations--your family is the grand prize winner in the Cancer Lottery! Deal with it! Tell all your friends! Get ready for the looks of pity (BOTH of them!), the rude comments (OMG, what is in the water there?), the condescending opinions (Hmm, former smokers, aren't you?) Tired of all that already, so we hide out. We tell only those people who absolutely need to know. We continue to live our lives like we always have, ignoring the monster when we can. For now we can get by with it. But we know that so many choices, so many decisions, so many actions we really don't want to take, are looming. Will need to be dealt with. Sooner or later.
Sunday, August 31, 2014
Live like you are dying?
I've been saving this rant er, blog topic in my head for some time now. Certainly not a new song/phrase, but I really hate it. What the hell does that mean anyway? How would you live differently if you knew you were dying?
The reality of living with a terminal disease is that many times when you're doing something fun and/or something out of the ordinary, you wonder if this is the last time you'll ever do it, the last time you'll ever be there, the last time you'll ever see these people, etc. So even when you're living in the moment, your mind is dragging you into the future. The hazy, unknown future.
The reality of living with a terminal disease is that you spend time pondering all the things the future will bring that you know you will most likely miss out on. Life fulfilling moments and experiences that you won't share with your kids. Senior proms, moving into the dorms, wedding dress shopping, new grandbabies. All of these haunt me and make my heart hurt for my daughter because her mom won't be by her side.
This Labor Day weekend has for about seven years now meant a party at our house--including friends, family, food, cocktails, music and fun. It's not happening this year because I didn't have the energy. I'm not living like I'm dying. I'm missing the people I would have seen and the fun I would have had and I'm angry that cancer has taken that away from me.
- Quit your job? Not if you need the health insurance.
- Travel the world? Not if it's completely unaffordable, and not if you have a family to take care of.
- Create a meaningful bucket list and cross things off, one by one? Not if you really don't have time in between going to work, going to treatment, scans and other medical appointments, hauling kids to activities, and/or supporting those you love in other ways. In the real world, there is no time for bucket lists.
- Appreciate those around you more than you ever thought possible? Savor every moment with loved ones? Yes, yes indeed you can do that. Even when it's difficult because you feel like shit and even when people let you down? Yes, you need to do that.
The reality of living with a terminal disease is that many times when you're doing something fun and/or something out of the ordinary, you wonder if this is the last time you'll ever do it, the last time you'll ever be there, the last time you'll ever see these people, etc. So even when you're living in the moment, your mind is dragging you into the future. The hazy, unknown future.
The reality of living with a terminal disease is that you spend time pondering all the things the future will bring that you know you will most likely miss out on. Life fulfilling moments and experiences that you won't share with your kids. Senior proms, moving into the dorms, wedding dress shopping, new grandbabies. All of these haunt me and make my heart hurt for my daughter because her mom won't be by her side.
This Labor Day weekend has for about seven years now meant a party at our house--including friends, family, food, cocktails, music and fun. It's not happening this year because I didn't have the energy. I'm not living like I'm dying. I'm missing the people I would have seen and the fun I would have had and I'm angry that cancer has taken that away from me.
Monday, August 11, 2014
And the beat goes on...
We're now into August; summer is flying by. Since I have connected with a few people here, and am still hopeful that I'm providing some help to someone somewhere by sharing this story, I feel somewhat obligated to continue posting--even if sporadically. Most days I'm so sick and tired of dealing with cancer...thinking about it, reading about it, living with it, that I'd prefer to do something mindless as opposed to blogging about my cancer experience.
As positive as I've tried to be here, the truth is my reality kinda sucks. Chemo for life is a grim road; I'm not gonna lie. Truth is I've felt like shit for about 5 months now. After months of complaining about chest pressure, abdominal pain, and telling docs and nurses that the current chemo combo (Cisplatin and Navelbine) is killing me, I got sent to a gastro doc who found a hiatel hernia and
H Pylori. So perhaps I'm not going to have a heart attack anytime soon, and perhaps the current antibiotics to kill the stomach bacteria will make me feel better once I get over having to crap about 12 times a day. Maybe there is light at the end of this incredibly long tunnel after all.
In other news, I'm trying to get into a clinical trial at the NCI in Bethesda, MD. It's an incredibly slow process and will likely be pretty unpleasant, but I know that immunotherapy is the future of effective treatment, so seems like the right thing to do. Still in limbo at this point.
The last bit of suckiness here is that my husband has been diagnosed with prostate cancer. His urologist insists that it's completely treatable, and that it's a very slow growing cancer. Still trying to process it. I'm strangely immune to the news, and my focus is on providing some semblance of strength and security for my daughter going forward.
So if I ever have the time and energy to actually do some deep and contemplative writing, I have plenty of fodder for blogging.
As positive as I've tried to be here, the truth is my reality kinda sucks. Chemo for life is a grim road; I'm not gonna lie. Truth is I've felt like shit for about 5 months now. After months of complaining about chest pressure, abdominal pain, and telling docs and nurses that the current chemo combo (Cisplatin and Navelbine) is killing me, I got sent to a gastro doc who found a hiatel hernia and
H Pylori. So perhaps I'm not going to have a heart attack anytime soon, and perhaps the current antibiotics to kill the stomach bacteria will make me feel better once I get over having to crap about 12 times a day. Maybe there is light at the end of this incredibly long tunnel after all.
In other news, I'm trying to get into a clinical trial at the NCI in Bethesda, MD. It's an incredibly slow process and will likely be pretty unpleasant, but I know that immunotherapy is the future of effective treatment, so seems like the right thing to do. Still in limbo at this point.
The last bit of suckiness here is that my husband has been diagnosed with prostate cancer. His urologist insists that it's completely treatable, and that it's a very slow growing cancer. Still trying to process it. I'm strangely immune to the news, and my focus is on providing some semblance of strength and security for my daughter going forward.
So if I ever have the time and energy to actually do some deep and contemplative writing, I have plenty of fodder for blogging.
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