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.
Thursday, June 12, 2014
Change in attitude
Since my last post was a real downer, I wanted to share some more upbeat thoughts on this lovely summer day.
Shortly after I whined about feeling alone, my extended family (my wonderful sisters, beautiful nieces, favorite nephew and family, my mom and dad, etc) surprised me by showing up at my door on a holiday weekend--snacks, beverages and lunch in hand. I was so happy to see them all, I quickly forgave them for the lack of warning (they knew I would cook and clean had I known they were coming). Many of them drove 4+ hours one way and back that day; what a gift.
I've made a conscious decision to stop comparing my story to other cancer stories on the distorted world of the internet. Duh. What was I thinking?
Many other good things going on around me as well:
~D.
Shortly after I whined about feeling alone, my extended family (my wonderful sisters, beautiful nieces, favorite nephew and family, my mom and dad, etc) surprised me by showing up at my door on a holiday weekend--snacks, beverages and lunch in hand. I was so happy to see them all, I quickly forgave them for the lack of warning (they knew I would cook and clean had I known they were coming). Many of them drove 4+ hours one way and back that day; what a gift.
I've made a conscious decision to stop comparing my story to other cancer stories on the distorted world of the internet. Duh. What was I thinking?
Many other good things going on around me as well:
- My little great nephew (son of #1 nephew above) came out of chemo for medulloblastoma with a clear scan, after an initial terrifying read. So happy for them! What a horrible road for a young family.
- My teenager is now legal to drive, and has hit the road. Scary, but less hauling her around for me. And I'm so grateful for every milestone I get to participate in.
- The hubby may finally be able to walk again soon, finally! after a long period of healing a broken leg. Looking forward to having him mobile again :)
- My latest scan came back with reduced SUV numbers/activity levels with no spread to other areas. So even thought I felt like crap and was sure the cancer was all over in my back and stomach, turns out I'm not dying anytime soon.
- Bad news is that current chemo routine continues. Suck.
- Summer has finally come to the midwest. The skies are a beautiful shade of blue with a brilliant white fluffy contrast. It's warm and wonderful after a ridiculously ugly winter. I'm grilling pork chops and eating watermelon and root beer floats. Life is good!
~D.
Monday, May 19, 2014
Gut reaction
Cisplatin and navelbine are kicking my ass--via my guts.
As usual, the body being sick kicks the brain into overdrive.
My head is spinning. I don't know how to carry on my 'normal' life feeling this shitty.
I don't know how to say 'enough already' when I have a little girl begging me to stay.
I don't know how to deal with a spouse having his own medical issues.
I need help, but there is no one is this bucket of crap with me. I feel alone with no one to turn to.
I read the happy stories of cancer patients surrounded by support and I get angry. Where is my support? Why do I have to do this alone?
Pity, party of one...
As usual, the body being sick kicks the brain into overdrive.
My head is spinning. I don't know how to carry on my 'normal' life feeling this shitty.
I don't know how to say 'enough already' when I have a little girl begging me to stay.
I don't know how to deal with a spouse having his own medical issues.
I need help, but there is no one is this bucket of crap with me. I feel alone with no one to turn to.
I read the happy stories of cancer patients surrounded by support and I get angry. Where is my support? Why do I have to do this alone?
Pity, party of one...
Thursday, April 3, 2014
Too good to be true
So Avastin was cool...virtually no side effects--none worthy of complaining about anyway.
But alas, my good fortune was not to be. Turns out the patient friendly chemo was allowing the tumors in my liver to grow and venture off into new areas.
Kind of a kick in the teeth. I had gotten to the point of thinking "hey, I can do this forever..." and now I'm right back to dreading the whole scene again. So sick of this. So sick of cancer. I must go on. Ugh.
Anyone know anything about navelbine? My next great adventure.
But alas, my good fortune was not to be. Turns out the patient friendly chemo was allowing the tumors in my liver to grow and venture off into new areas.
Kind of a kick in the teeth. I had gotten to the point of thinking "hey, I can do this forever..." and now I'm right back to dreading the whole scene again. So sick of this. So sick of cancer. I must go on. Ugh.
Anyone know anything about navelbine? My next great adventure.
Monday, February 17, 2014
Thankful
After several months of doing the insurance company shuffle: attempting to get approval, being denied, and following multiple levels of appeal, my health insurance company (with a little encouragement from an external medical review board) has finally approved the use of a new chemo drug for me. Avastin is of a different drug 'family' so to speak; I'll spare you the medical/scientific details because I would no doubt get it wrong anyway.
Suffice to say that I was so looking forward to getting on this drug for several reasons. First and foremost: the side effects are virtually non-existent. No more chest/esophogeal issues, no nausea, no body aches, no rock bottom white blood counts, no shots to boost WBC, no steroids, no more anti- nausea drugs and thus no violent swings from constipation to crapping constantly. Perhaps I'll even begin to feel my feet again. Sad to admit that at this point, the little tendril of hope that this drug may actually stop the growth of the cancer is a distant second reason I'm glad to be going down a new path.
So for now I'll just be thankful that I caught this break. At least what I perceive to be a break at this point anyway. Just when I thought I couldn't go on, I have a light in my tunnel again. Thanks, big guy, for looking out for me.
Suffice to say that I was so looking forward to getting on this drug for several reasons. First and foremost: the side effects are virtually non-existent. No more chest/esophogeal issues, no nausea, no body aches, no rock bottom white blood counts, no shots to boost WBC, no steroids, no more anti- nausea drugs and thus no violent swings from constipation to crapping constantly. Perhaps I'll even begin to feel my feet again. Sad to admit that at this point, the little tendril of hope that this drug may actually stop the growth of the cancer is a distant second reason I'm glad to be going down a new path.
So for now I'll just be thankful that I caught this break. At least what I perceive to be a break at this point anyway. Just when I thought I couldn't go on, I have a light in my tunnel again. Thanks, big guy, for looking out for me.
Tuesday, January 14, 2014
Update, schmupdate
I get the occasional request for "updates", and I'm not sure how to respond.
I really can't think of a standard answer....where to start?
I could go into detail about how shitty I feel for days after chemo; could talk about the weird pressure in my throat and chest that is begging me to stop the madness.
I could talk about how this whole pain in the ass routine is going to be with me for the rest of my life, or at least until I throw up the STOP sign.
I could talk about the latest scan results, or the latest battle with the insurance company.
But I really don't want to. The whole business gives me a bad taste in my mouth. Why would I want to savor it? I don't want to go over it again, because you see, these "updates" are not really news--they are just the new normal of my life.
I have nothing more interesting to say than the dopey people who post about how best to clean your hardwood floors or make your windows shine.
This cancer crap is just boring, routine stuff that I'd rather not repeat. Rather not talk about. Rather not write about. Guess that makes me worthless as a cancer blogger, eh? Might be time to hang it up entirely since I spend so much time avoiding it.
So instead I answer with all the bluntness I can muster. There is no update. My disease is terminal. We all deal with it as needed, when we're forced to. It's just so much easier to avoid it entirely. I'm too damn busy living day to day to come up with anything profound.
I really can't think of a standard answer....where to start?
I could go into detail about how shitty I feel for days after chemo; could talk about the weird pressure in my throat and chest that is begging me to stop the madness.
I could talk about how this whole pain in the ass routine is going to be with me for the rest of my life, or at least until I throw up the STOP sign.
I could talk about the latest scan results, or the latest battle with the insurance company.
But I really don't want to. The whole business gives me a bad taste in my mouth. Why would I want to savor it? I don't want to go over it again, because you see, these "updates" are not really news--they are just the new normal of my life.
I have nothing more interesting to say than the dopey people who post about how best to clean your hardwood floors or make your windows shine.
This cancer crap is just boring, routine stuff that I'd rather not repeat. Rather not talk about. Rather not write about. Guess that makes me worthless as a cancer blogger, eh? Might be time to hang it up entirely since I spend so much time avoiding it.
So instead I answer with all the bluntness I can muster. There is no update. My disease is terminal. We all deal with it as needed, when we're forced to. It's just so much easier to avoid it entirely. I'm too damn busy living day to day to come up with anything profound.
Tuesday, November 19, 2013
Sweet Dreams
So it seems I have this love/hate relationship with my bed lately. I'm often dead tired by the end of the day, and sleep seems like a blessed escape, but the minute I crawl into bed and get ready to sleep some switch flips in my brain and I'm mentally wide awake. There are few things in life more frustrating than not being able to get to sleep even when you're tired. Laying there watching the minutes tick by on the alarm clock, all I can think about is how tired I'm going to be the next day if I don't get some damn sleep soon. And of course, there are lots of thoughts that creep to the surface in the wee hours that I normally thump down in the light of day. So I've started dreading going to bed.
The preceding sentences have been nothing short of a justification for abusing my new nighttime drug combo of choice: Advil PM and Lorazepam.
I admit that because I think it's contributing to the wealth of dreams that finally come when I now fall asleep--deep and drugged. They are always pleasant dreams. Maybe this is a blessing sent to cancer patients everywhere....your life is chaos, you feel like crap, but your nights will be full of laughter and flouncing around on rolling green hills in the sunshine.
My daughter is there--smiling and laughing and looking like she is about seven or eight again. No teenage moodiness, no arguments. My husband is there--helpful and happy and looking like we're on the best vacation ever. My job is there, but there is meaning and purpose to having a career again.
Life is good in my dreams. I feel light and carefree; cancer doesn't cloud the horizon at all. When I wake up, that feeling stays for just a fleeting minute before being replaced by my reality.
The preceding sentences have been nothing short of a justification for abusing my new nighttime drug combo of choice: Advil PM and Lorazepam.
I admit that because I think it's contributing to the wealth of dreams that finally come when I now fall asleep--deep and drugged. They are always pleasant dreams. Maybe this is a blessing sent to cancer patients everywhere....your life is chaos, you feel like crap, but your nights will be full of laughter and flouncing around on rolling green hills in the sunshine.
My daughter is there--smiling and laughing and looking like she is about seven or eight again. No teenage moodiness, no arguments. My husband is there--helpful and happy and looking like we're on the best vacation ever. My job is there, but there is meaning and purpose to having a career again.
Life is good in my dreams. I feel light and carefree; cancer doesn't cloud the horizon at all. When I wake up, that feeling stays for just a fleeting minute before being replaced by my reality.
Sunday, September 15, 2013
Here we go again
This week brought with it a visit to a new gynecologic cancer clinic --this time at the U of M. After my last, somewhat confrontational appt with my own oncologist, she encouraged me to get a second opinion at the Mayo or at the U to "satisfy myself and/or my family that there aren't options we're not pursuing". I didn't bother to remind her that I had already been to the Mayo....shouldn't she know this?
So I forced myself to march into yet another medical setting and start over with my story
(in 3 minutes or less) with a medical resident who would in turn relate it to the doctor (in 2 minutes or less), only to have both of them return to the room and basically ask me why I was there. What questions did I have for them? Uh, gee--well, can you do SOMETHING to save my life? What about pelvic exenteration? No? Well ok then, how about just removing the damn "source area"? If you can remove a cervix, why not the vaginal cuff? No? Well, ok then, how about more precise radiation? No? Can you do some kind of dance to the warrior gods that will make this little problem I have go away? No? Ok, well how about you just kick me in the teeth and tell me to go home and die? OK, sure. On my way out, the good doc looked at me with this overwhelming look of PITY and told me to have a good day. None for me, thanks.
In all fairness, he seemed like a nice enough guy....actually answered all my questions in English as opposed to medi-speak. Explained how the body "remembers" radiation, so it's not like starting over, it's cumulative--and the pelvic tissue can only take so much before the damage itself becomes life threatening to other organs. Explained that there was reason for optimism re: length of life in that I had a relatively long period of time before recurrence. Explained how no oncologist would recommend surgery that wasn't going to HEAL the patient. And I am beyond healing. Maybe if I hear it enough times, from enough different doctors, it will eventually sink in.
It made me wonder if they often have to deal with desperate people, such as myself...not really ready to die, not really able to grasp or accept the facts because I feel perfectly healthy, excepting some chemo side effects occasionally kicking my ass.
Speaking of which, my upper lip has decided to randomly swell up to the size of a basketball. Interesting the weird impact of chemo drugs on the body's immune system. I very closely resemble Daffy Duck. We've named it The Duck Bill. Funny, although it's hard to breathe with your upper lip blocking your nostrils. Nothing more steroids can't resolve... but I digress.
I feel somewhat helpless. I want to find people in my same situation, but I don't know where to find them. I wonder if there are others in this same state of limbo, trying to figure out how to deal with the terminal diagnosis while still living a "normal" life.
I also feel strangely vulnerable, which I hate. I want to go back to being strong and independent, not sucked into this medical vortex of insecurity that I never wanted to be a part of. Fucking cancer.
So I forced myself to march into yet another medical setting and start over with my story
(in 3 minutes or less) with a medical resident who would in turn relate it to the doctor (in 2 minutes or less), only to have both of them return to the room and basically ask me why I was there. What questions did I have for them? Uh, gee--well, can you do SOMETHING to save my life? What about pelvic exenteration? No? Well ok then, how about just removing the damn "source area"? If you can remove a cervix, why not the vaginal cuff? No? Well, ok then, how about more precise radiation? No? Can you do some kind of dance to the warrior gods that will make this little problem I have go away? No? Ok, well how about you just kick me in the teeth and tell me to go home and die? OK, sure. On my way out, the good doc looked at me with this overwhelming look of PITY and told me to have a good day. None for me, thanks.
In all fairness, he seemed like a nice enough guy....actually answered all my questions in English as opposed to medi-speak. Explained how the body "remembers" radiation, so it's not like starting over, it's cumulative--and the pelvic tissue can only take so much before the damage itself becomes life threatening to other organs. Explained that there was reason for optimism re: length of life in that I had a relatively long period of time before recurrence. Explained how no oncologist would recommend surgery that wasn't going to HEAL the patient. And I am beyond healing. Maybe if I hear it enough times, from enough different doctors, it will eventually sink in.
It made me wonder if they often have to deal with desperate people, such as myself...not really ready to die, not really able to grasp or accept the facts because I feel perfectly healthy, excepting some chemo side effects occasionally kicking my ass.
Speaking of which, my upper lip has decided to randomly swell up to the size of a basketball. Interesting the weird impact of chemo drugs on the body's immune system. I very closely resemble Daffy Duck. We've named it The Duck Bill. Funny, although it's hard to breathe with your upper lip blocking your nostrils. Nothing more steroids can't resolve... but I digress.
I feel somewhat helpless. I want to find people in my same situation, but I don't know where to find them. I wonder if there are others in this same state of limbo, trying to figure out how to deal with the terminal diagnosis while still living a "normal" life.
I also feel strangely vulnerable, which I hate. I want to go back to being strong and independent, not sucked into this medical vortex of insecurity that I never wanted to be a part of. Fucking cancer.
Sunday, August 25, 2013
SOS
Results from last week's scan indicated increased metabolic activity at the original site (vaginal cuff) as well as in the liver. An icing on the cake of this news was that there is also a new spot on the right lobe of the liver. So that means (drum roll please) MORE CHEMO!! Same Old Shit. Trying new drug combo this time. Honestly not sure if that means I've hit the point of the body's resistance to the drugs I was on, or if the doc figured out that the first combo platter just wasn't the right choice; I will likely never know, since straight answers are hard to find.
Again wondering if I'm ever going to get used to hearing this type of news. I always have hope; there are always "signs" of healing/improvement that are apparently a mental game I'm playing on myself. Does that hope go away after being kicked in the teeth a given number of times?
This particular call came as I was riding in the car on the way home from a short and restless vacation/getaway, which means my family got to hear the news with me. It was a somewhat horrific scene, which I would have played differently if the fam wasn't within earshot of one side of the conversation. Almost immediately after I conveyed an abbreviated version of the news delivered by my doc's nurse, my strong and fiercely independant teenager started sobbing and repeating "you can't leave; I NEED you" which is enough to break any mother's heart in two.
The conversation continued later that night in the safety of her bedroom, and again the phrases "I need you" and "dad needs you" kept coming up. And while I tried my best to dissuade the notion that our lives revolve around me, the truth was hovering in the room. When your immediate family is a threesome, losing one of the three is is bound to have a major impact that I cannot control. And while I mutter comforting statements designed to relieve the fear of the unknown, my heart is ripping in half because I know that I may very well not be here to make sure she finishes high school with good grades and good friends. I may not be here to do everything I can to make sure she gets a good SAT score and gets into a college of her choice. I won't be able to influence the type of men she dates; I won't be able to help her get ready on her wedding day. All of it rips up my guts, but I smile bravely and tell her everything will be OK.
Again wondering if I'm ever going to get used to hearing this type of news. I always have hope; there are always "signs" of healing/improvement that are apparently a mental game I'm playing on myself. Does that hope go away after being kicked in the teeth a given number of times?
This particular call came as I was riding in the car on the way home from a short and restless vacation/getaway, which means my family got to hear the news with me. It was a somewhat horrific scene, which I would have played differently if the fam wasn't within earshot of one side of the conversation. Almost immediately after I conveyed an abbreviated version of the news delivered by my doc's nurse, my strong and fiercely independant teenager started sobbing and repeating "you can't leave; I NEED you" which is enough to break any mother's heart in two.
The conversation continued later that night in the safety of her bedroom, and again the phrases "I need you" and "dad needs you" kept coming up. And while I tried my best to dissuade the notion that our lives revolve around me, the truth was hovering in the room. When your immediate family is a threesome, losing one of the three is is bound to have a major impact that I cannot control. And while I mutter comforting statements designed to relieve the fear of the unknown, my heart is ripping in half because I know that I may very well not be here to make sure she finishes high school with good grades and good friends. I may not be here to do everything I can to make sure she gets a good SAT score and gets into a college of her choice. I won't be able to influence the type of men she dates; I won't be able to help her get ready on her wedding day. All of it rips up my guts, but I smile bravely and tell her everything will be OK.
Saturday, July 20, 2013
Them or me?
No medical news, and tired of talking about it anyway...so I find the other thing most frequently rattling around in my semi-functional brain lately is how to help others deal with my illness. Which, by the way, is still just so damn weird. I look fine (as fine as an overweight, middle aged bald chick can look), I feel fine (when chemo hasn't kicked my ass), so can't we just ignore the looming dark cloud? Speak around the elephant in the room?
Not to mention, it's really easy to get sucked into a focus on ME, ME, ME. After all, I'm the one dying here--can't the rest of the world bend over and kiss my ass please?
It's a struggle to remember that those around me, at least the ones who really care about me, are hurting too. I try to get inside their head and figure out--are they really dealing with it? Or are they pretending its not happening? Do they think about what life will be like without me in it? Is there sadness? Anxiety? Or do they fly through the days focusing on other things so they don't have to think about it?
It's like this huge task called "Helping Other People Deal" is out there--waiting for me to take it on. But I don't have the energy. Or the skills. I don't know where to start. And why do I have to do this anyway? Can't you figure out how to do it on your own for once? Do I have to do everything around here?
Not to mention, it's really easy to get sucked into a focus on ME, ME, ME. After all, I'm the one dying here--can't the rest of the world bend over and kiss my ass please?
It's a struggle to remember that those around me, at least the ones who really care about me, are hurting too. I try to get inside their head and figure out--are they really dealing with it? Or are they pretending its not happening? Do they think about what life will be like without me in it? Is there sadness? Anxiety? Or do they fly through the days focusing on other things so they don't have to think about it?
It's like this huge task called "Helping Other People Deal" is out there--waiting for me to take it on. But I don't have the energy. Or the skills. I don't know where to start. And why do I have to do this anyway? Can't you figure out how to do it on your own for once? Do I have to do everything around here?
Sunday, June 2, 2013
And the answer is....
While there is some improvement seen, there is still cancerous activity evidenced on the scan. Liver lesion is still there, as is the tumor at the original site.
I can't adquately describe the feeling of hearing the news. Certainly not what I wanted to hear. More chemo in the very near future means that cancer will remain in the front seat, as opposed to the rear of the bus where I had hoped to seat it, at least temporarily.
In comparison to other metastatic cancer patients, I'm fairly fresh into this. I imagine multiple iterations of this scene. Does the news get any easier over time?
I wanted to hear 'go enjoy your summer', not '3 to 6 more rounds'.
Late spring/early summer weather is here, and it is beautiful. I try to enjoy it without thinking about if this is the last time I'll see this welcome change of seasons. I resist the urge to find a tall cliff from which I can scream from the top of. I hold it together and keep on plugging along.
I can't adquately describe the feeling of hearing the news. Certainly not what I wanted to hear. More chemo in the very near future means that cancer will remain in the front seat, as opposed to the rear of the bus where I had hoped to seat it, at least temporarily.
In comparison to other metastatic cancer patients, I'm fairly fresh into this. I imagine multiple iterations of this scene. Does the news get any easier over time?
I wanted to hear 'go enjoy your summer', not '3 to 6 more rounds'.
Late spring/early summer weather is here, and it is beautiful. I try to enjoy it without thinking about if this is the last time I'll see this welcome change of seasons. I resist the urge to find a tall cliff from which I can scream from the top of. I hold it together and keep on plugging along.
Friday, May 24, 2013
Still waiting
Another update in the off chance that there are any readers of this pathetic blog still out there. Not a lot of news. In a nutshell: chemo, chemo, chemo, scan. chemo, chemo, chemo scan. Currently waiting for the next scan date to roll around after completing round 6 (but who's counting?).
Playing in my head how I'll answer inquires re: the results. 1) NED--asker will be happy; I'll pretend to be. I won't tell them that this only buys me a brief respite from chemo, but in all likelihood its just that.
2) Cancerous activity still present--asker will say 'that sucks'. I'll say yes...yes, it does.
I've been doing a lot of "cancer reading". This, as opposed to reading I'd really prefer to be doing..something fluffy and entertaining that my brain won't have to think too much about.
Anway, I've read everything from the '50 things you must do', most of which consisted of positive thinking, positive imaging, curing your cancer with positive thoughts, blah blah blah. I kept thinking of all the people who have died from cancer and how positive they were to the bitter end. It's easy to preach positivity when you no longer have cancer. Another book suggested that cancer was crazy and sexy. Not.
Read a lot of upbeat little words of wisdom for cancer patients. All of this is making me want to puke. I have a couple more...haven't made it thru the 'love and miracles' genre yet. I just gotta quit buying used books from Amazon.
The best advice I've run into came from a family therapist my oncologist recommended.
I paraphrase......If you're not actively dying, you're living. Get all the logistical crap associated with dying behind you so you can focus on living.
I'm living!
Playing in my head how I'll answer inquires re: the results. 1) NED--asker will be happy; I'll pretend to be. I won't tell them that this only buys me a brief respite from chemo, but in all likelihood its just that.
2) Cancerous activity still present--asker will say 'that sucks'. I'll say yes...yes, it does.
I've been doing a lot of "cancer reading". This, as opposed to reading I'd really prefer to be doing..something fluffy and entertaining that my brain won't have to think too much about.
Anway, I've read everything from the '50 things you must do', most of which consisted of positive thinking, positive imaging, curing your cancer with positive thoughts, blah blah blah. I kept thinking of all the people who have died from cancer and how positive they were to the bitter end. It's easy to preach positivity when you no longer have cancer. Another book suggested that cancer was crazy and sexy. Not.
Read a lot of upbeat little words of wisdom for cancer patients. All of this is making me want to puke. I have a couple more...haven't made it thru the 'love and miracles' genre yet. I just gotta quit buying used books from Amazon.
The best advice I've run into came from a family therapist my oncologist recommended.
I paraphrase......If you're not actively dying, you're living. Get all the logistical crap associated with dying behind you so you can focus on living.
I'm living!
Wednesday, April 17, 2013
Waiting, waiting, waiting, the new normal
Cancer update: In the middle of current chemo round 5. Things are going pretty well, considering this is day 3 and I feel good. Progress, I'd say. Maybe this old bod is getting used to the routine of being walloped every 3 weeks with this strange combination of unknowns.
In the middle of a never-ending winter here...nearly to May with snow still on the ground and more coming our way soon. Saw a random sign of spring this AM which inspired me to write. A very plump chested robin scrounging in my still snow-covered flower bed. Looking and hoping and waiting....just like me.
Learning to live with the uncertainty of metastatic cancer patients everywhere. Doing what I'm told, wondering if it's enough, wondering if I should be doing more to save myself. Well meaning friends and relatives are sending me diets to try....starve the cancer cells, feed the good cells, eat protein, don't eat meat, eat dairy, don't eat dairy. It's all overwhelming to me, and I don't know whether to ignore them all or try everything. So instead I do nothing different....trusting my fate to an oncologist who really doesn't seem to give a damn whether I live or die.
Ticking things off the "to-do" list makes me feel productive, so spending my pre-chemo morning hours doing just that. Back to work tomorrow, so nothing life-changing gets done then...
News from the doc this week was that after #6, we'll scan again and determine whether we do:
1) Nothing because scan now indicates NED
2) Back to more chemo if activity still exists
No surgery option, according to her although I could have sworn the liver doc said we'd revisit after chemo. Found some other options on-line ( I know, I know.....don't ever visit Dr.Google).....chemoembolism, liver tumor ablation, etc. Worth checking? Hate to step on doc's toes, but then again it's my life at stake. Decided to wait and see what next scan says, then proceed.
All this waiting around is testing my admittedly short patience level.
Me and the robin....waiting for the thaw.
In the middle of a never-ending winter here...nearly to May with snow still on the ground and more coming our way soon. Saw a random sign of spring this AM which inspired me to write. A very plump chested robin scrounging in my still snow-covered flower bed. Looking and hoping and waiting....just like me.
Learning to live with the uncertainty of metastatic cancer patients everywhere. Doing what I'm told, wondering if it's enough, wondering if I should be doing more to save myself. Well meaning friends and relatives are sending me diets to try....starve the cancer cells, feed the good cells, eat protein, don't eat meat, eat dairy, don't eat dairy. It's all overwhelming to me, and I don't know whether to ignore them all or try everything. So instead I do nothing different....trusting my fate to an oncologist who really doesn't seem to give a damn whether I live or die.
Ticking things off the "to-do" list makes me feel productive, so spending my pre-chemo morning hours doing just that. Back to work tomorrow, so nothing life-changing gets done then...
News from the doc this week was that after #6, we'll scan again and determine whether we do:
1) Nothing because scan now indicates NED
2) Back to more chemo if activity still exists
No surgery option, according to her although I could have sworn the liver doc said we'd revisit after chemo. Found some other options on-line ( I know, I know.....don't ever visit Dr.Google).....chemoembolism, liver tumor ablation, etc. Worth checking? Hate to step on doc's toes, but then again it's my life at stake. Decided to wait and see what next scan says, then proceed.
All this waiting around is testing my admittedly short patience level.
Me and the robin....waiting for the thaw.
Sunday, March 24, 2013
Still kicking
Hello world of cancer blog readers; my apologies for being AWOL for quite some time here. I've been pretty busy plugging along...going to chemo, going to work, going nuts in my own head trying to figure out how to deal with all of this.
Also busy making lists of things I have to get done before I die; who would have thought I (who ME?) would have been making THAT list.....refinance the mortgage, figure out how your spouse goes about getting your 401k, setting up that college savings plan I've been meaning to do for years now, write an obituary, join a church, find a lawyer, write a will, think of songs for my funeral, look into prepaid funeral plans, reach out to old friends. It goes on and on. It's a hefty list. I'm pretty good at avoiding most of them. All these critical things that need to be done. I sleep better knowing they're on a list somewhere but I don't actually accomplish any of them. I hunt for new recipes on Pinterest, I email friends, I waste time on Facebook, I read entertaining novels and avoid the cancer stuff I "should" be reading.
Don't get me wrong, I'm still fighting to live. But dying is never far from my thoughts.
It's a monumental thing to get your head around. It consumes me, and on bad days I wonder if I need some kind of therapy to help me with dying. On good days I wonder what if the doctors are all wrong, what if I can beat the odds and be that one that makes it. Got good news this week, PET scan after round 3 reveals "favorable response to treatment". That means we continue with rounds 4, 5 and 6. I was ridiculously happy about this for a whole day. Then I started having doubts....can I make it? I think I can, I think I can. I have no choice. I can do this.
Also busy making lists of things I have to get done before I die; who would have thought I (who ME?) would have been making THAT list.....refinance the mortgage, figure out how your spouse goes about getting your 401k, setting up that college savings plan I've been meaning to do for years now, write an obituary, join a church, find a lawyer, write a will, think of songs for my funeral, look into prepaid funeral plans, reach out to old friends. It goes on and on. It's a hefty list. I'm pretty good at avoiding most of them. All these critical things that need to be done. I sleep better knowing they're on a list somewhere but I don't actually accomplish any of them. I hunt for new recipes on Pinterest, I email friends, I waste time on Facebook, I read entertaining novels and avoid the cancer stuff I "should" be reading.
Don't get me wrong, I'm still fighting to live. But dying is never far from my thoughts.
It's a monumental thing to get your head around. It consumes me, and on bad days I wonder if I need some kind of therapy to help me with dying. On good days I wonder what if the doctors are all wrong, what if I can beat the odds and be that one that makes it. Got good news this week, PET scan after round 3 reveals "favorable response to treatment". That means we continue with rounds 4, 5 and 6. I was ridiculously happy about this for a whole day. Then I started having doubts....can I make it? I think I can, I think I can. I have no choice. I can do this.
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