Having cancer

Everything else
949

As difficult as things are, I still find it unimaginable what you went through @tylertoo. A moniker which seems almost weirdly prescient…or should it be mine…anyway… I was updating my Mom on my wife’s current fall this weekend and was thinking of you as I told her, “but others have it worse than me so I should shut up”. I know, again, that’s not how it works. I think I have conditioned myself to think that way after years of anxiety and depression where I thought I had it sooo bad and poor Tyler when in grade and high school. I hate that version of me. I so much don’t want to be the guy who uses his tribulations for attention or pity or for “playing that card” or whatever. So thank you again for sharing your story. It helps me know that I can make it as you did and that much of my feelings and emotions are indeed common. (And thanks for the compliment on my rambling descriptions. I do very little other than put down what pops in my head. Sometimes I still look up words as I am not confident in my use of them while they are usually correct. I envy people like Tom who can so clearly describe their thoughts. I think I fail and simply use too many words more often than I succeed)

Thanks to @Bernie_Dy also. I don’t know that I could do what you did for my parents, but I live with the fear that I may do those things for my wife in the not so distant future. I know hospice will come in handy at some point as she becomes less mobile. I would both like the additional assistance, but also would, of course, like to never need it.

Thanks again to everyone here. I think I would like to one day write a book about what I have been through, but I am not sure who all of my friends, family and co-workers would have to pass away also before I could be as honest as I am here. And that honesty is what the story requires and deserves. I’d want to tell of the wasted days at my desk and the irritation with every family member. The church people who help and who I get tired of hearing from as that is a reminder that I cannot do it and they are needed. That the cancer is too much. All of the people I am lucky to have supporting us are a blessing, but their presence also reflects the sadness and destruction the disease causes that requires so much attention. Also, the frustrations with my wife. Your marital issues do not evaporate when your spouse is dying. You simply suppress your feelings and often have to endure more of the same. Amplified. I don’t think there would be a time I can write that book without angering 95% of the people I know in some way.

I have found my honesty to really only be accepted by certain people and I usually know beforehand who that is so I am guarded with it. Today I unburdened myself regarding what I find to be utterly useless in Christianity in my situation on a sincere and concerned co-worker who is more religious than I (low bar at this time in my life) and believes God literally cured his Mom when he was a kid when things were bleak, his mom was considering suicide due to pain and she was basically unable to get out of bed.

It is hard when people have stories like that because your doubts about God and the efficacy of prayer sound like an invalidation of their experience. I pressed ahead and we probably talked for an hour. It may have been 90 minutes. By the end, he understood that quoting scripture is not what I need. That’s what many want and covet, but words of comfort and support while I have time to reconnect with whatever spirituality is left in me and for me is what I require. He took it all well and in the manner in which I intended it and I was thankful for that. He’s a good person.

Lest people think I am weathering this well with only frustration and mental exhaustion and no other negative results, I am drinking entirely too much beer. I talk to my therapist about that. I monitor it. I talk to others as I am aware of the danger I put myself and my family and strangers in if I am out of the house and do it. It is a purely selfish act. I am more tired and irritable as a result. I have gained weight, although on my 6’4" frame I am told I should not complain. My health is probably suffering, but since I have no time to exercise, it hasn’t revealed itself yet. I make it to work most days. A couple days I have “played the cancer card” and stayed home with my wife somewhat hungover. It is stupid and I have guilt and regret over that more than anything and it affects my work a bit and it increases any depression with which I am currently wrestling and it makes me less patient with my wife and kids and a dozen other things. I simply have no break from any of it unless I am drinking. I am not drunk every night. I do not actually drink to that point very often. I do have enough that it certainly disrupts my sleep cycle.

I got everyone settled the night after Rebecca’s fall and went to my local place and had 4 beers. I was free. Everyone was taken care of at home. The people there know my family very well and our difficulties. Many ask how things are and then that is it. Then we chat or curse or tell bad jokes and then it is time to go home. And I do not. I go to another local bar that is more of a night life hangout and have a couple beers there. I don’t talk to people. I sit. I sit in the noise with the TVs around with people living lives with their own problems, but people are generally happy. They do not even know my problems and don’t care. And that’s fine. A small dose of that is good.

Then I want more interaction and that often ends at a late night music venue. I buy a struggling band beers and have a couple more. I buy a T-shirt which turns out has a bare breasted woman possibly stabbing her lover from a female-led band called Doomstress. They are good. How good I cannot recall, but I am happy to buy the drinks and the T-shirt or maybe a CD even if I never wear it or listen to it. (This T-shirt will certainly be donated to someone. Someone who is not a CPA and not in the Southeastern United States.) I am free of ties to anything and I am helping out someone else. I am contributing to them without any expectation of return as they already finished their set. I could simply walk out, but I have the urge to repay people for their service and kindness. Something I cannot do for my family and friends right now.

I may be reading more meaning into all of my inebriated activities, and sober ones for that matter, but I am in such a cycle that anything to break out of that is welcome. Even if I know it is wrong and could possibly be destructive to all of those around me. Each time I say I know better and need to get a handle on it and I do. And then in two or three or four weeks I have this sliver of freedom that I never want to end. The same thing depressed, anxious, divorcing, bored people do. I know my wife’s cancer is no better an excuse. I hope you won’t judge me too harshly, but I also want people to know that when people say they are struggling, but weathering whatever storm in which they find themselves, they may still be hiding ways they are coping for which they may be ashamed or reticent to reveal when you ask “No, really, how are you doing”.

At this point I think I am supposed to find out how many Hail Marys I am supposed to do. Sorry for the wall of text. Some days I do not want to talk to even my closest friends and loved ones and others I can’t shut the fuck up to the praying co-worker or my Qt3 friends

950

I know this is talking about the future, but I think you should totally write that book. It’s pretty clear to me that writing the posts here is something that helps you, inasmuch as anything can. Sure seems like more writing once this is all over will help also. You don’t have to publish it, or if you do use a pseudonym and change the names (a third party editor can do that for you, look me up if you need that).

I know we keep saying this, but it bears repeating…we’re here to listen (read) whenever you need to talk (write). No apologies needed. You have our best wishes and sympathies, though I know that’s probably not much comfort as you get that from everyone. More importantly, here you can know that you have been heard.

951

And don’t forget that for every person that replies here, there are at least a few like me who are touched and inspired just by reading about your experience. We’re all pulling for you and your family.

952

I want to say there is no way I can imagine what you are going through, but then you are so eloquently putting what you are going through into words, that I can not help but be humbled by your writing.

We all like to second guess what we would do in your shoes. My mom died 4 days after going into her first chemo treatment due to a adverse reaction to the chemo. We had mentally geared ourselves up for a long fight - she had bought a wig in preparation, we had all read many books and we visited her in the hospital for her operation to remove as much as possible before starting the chemo. I returned home and we had agreed to a schedule of visiting every other week. Four days later I was called and told she had taken a turn for the worse and I left work early and drove the 5 hours to visit her. She died while I was en-route.

When I read your heartfelt and emotional writings, I question whether I was truly ready for the long haul. I would like to imagine that I would have been there physically and mentally and given everything I could have to make her last year or so as pleasant as I could, but then your writings make me realize that bravado would have been eclipsed by a desire to have it all just end to put an end to not only her suffering but our family’s suffering as well.

In the days after her death, my dad confided in me that he felt so bad because he had not been as gentle as he could have been when helping her clean up after a messy diarrhea episode. And this was only 2-3 days after the chemo started. What would he have been like 9 months or 18 months later? Your writings give insight into this.

So I want to thank you for putting your words down and letting us read them. In a strange way, it’s removed some of the guilt that I’ve had for nearly 20 years (she died in 1997) in realizing that yes, it is sometimes better if it’s over quickly even if I would have preferred to have her last longer so that I could have had conversations that I never got to have.

I’ve created a coping mechanism over the past 20 years in looking up to the sky and thanking my mom whenever anything remotely good happens in my life. Big things like three 75 degree days in mid May on the Oregon Coast when I celebrated my 50th b-day to small details like having 4 green lights when I’m running late to work. Because I know that when she was alive, she would do anything to make my day better in whatever way she could and I like to imagine it continued when she died.

So while you are going through this emotional time I would like to dream that you spent some time thinking of all the great things that you and your wife have experienced during your time together and have thanked her in person.

And continue to write and do publish a book because you have an incredible way with words and I know it will help others because it’s already helped me.

953

Thank you all especially @Tman for your continued kind words. I have a co-worker whose step father that she was close to who had been sick for a while, declined suddenly and passed away. She was not prepared. SHe said she gained a better understanding of what I was going through over those couple of weeks. After he passed, I pointed out that while she was there and was able to say goodbye, mentally she did not have the time to gradually say good bye mentally. It is very different just as it would have been different if she had not been there when he passed. All these experiences are impossible standing on the outside, but most of the time when you are in them, you get through as you have no choice. I thought I was prepared for the long haul and have done OK for two years, but I am not prepared for this final stage or how slowly it can take and all the unknowns surrounding it.

Some days recently I have gone to lunch and simply drive home and sleep on the couch for a couple hours. I have had a cold/allergies/sinus problems much more this year. I am always tired. My job is such that I have nothing going on and if I stay quiet, for now, I am left alone. I definitely feel I am taking advantage of the situation and it is completely opposite from my previous work ethic. A work ethic I can’t remember 100% practicing now. I feel so far removed from the person I and the family we used to be.

I am not exactly wandering around in a daze like I did when I get a bad result from a medical test or scan. It’s more like an alternate reality where everything is sad and colored by the decline in her health. Included in that is depression and hopelessness and exhaustion. I can’t remember the last time I felt well rested.

All that to say, I don’t know which is preferable. My daughters are still getting the occasional laugh with their Mom. Her friends still come by and visit with her and she is happy. I feel as I am simply the facilitator for their continued relationships with her and I am getting very little out of the deal. Again, on the surface and if I had not prefaced this with all my other postings, this sounds horribly selfish and callous. Without the ability to convey what this long ordeal without rest or vacation coupled with constant fear and anxiety does to your mind, I cannot fully express how I got from who I was before she was re-diagnosed two years ago to the guy today I do not recognize. Outwardly, people see an approximation of the same guy only a little more tired and blunt. On the inside, I really don’t know who I am.

Our 21st anniversary is in 2 days. I had hopes of getting her to dinner, but she has had some increased breakthrough back pain for which she has taken additional pain pills. My guess is it will be just another day. I’ll kiss her on the forehead and say happy anniversary and that I love her, give her some chocolate and some flowers and her meds and go back to the living room and play videogames.

954

This is some serious bullshit, man. I’m not living your life, but I have lived mine and this is an action that you will regret. Your wife literally has months to live and you are going to be petty and not celebrate your relationship together? I think that is a mistake.

955

It is not being petty. She does not have much energy and is in pain. We will probably watch some TV shows at some point, but if the last days are any indication, she will not be up for getting out and about. It is not about neglecting her or actively avoiding celebration. It is because of the inability for her to do very much at this point and the routine we find ourselves in where all the days run together. I do love her and care about her and that is why I continue to do everything I can for her.

I didn’t expect everyone to understand and I won’t apologize for what I have typed. I am trying to be honest about my feelings and not sugarcoat them.

956

C’mon, that’s not what he’s saying at all. He said what he had hoped to do, but is realistic on what is probably gonna happen. It’s day to day. Many days his wife is physically incapable of doing anything. I doubt that @Tyjenks is going to sequester himself if another option is open. What do you expect him to do if he gets up in the morning and its one of those days where she takes her meds and is out of it for the day?

957

It sounds like she is going to be heavily medicated and probably sleeping. As he said, he wants to take her out but his justifiably pessimistic prediction is that will not be an option.

What, do you really think he is just going to walk in, toss some chocolates on the bed and say oh, well, can’t go out to dinner then I am just going to go play video games!

958

Exactly, I guess I could have worded that part better, but there are many days she does not even want people in the room. She has to focus on breathing oxygen from the machine and the television. The mere presence of people can bring on anxiety and distraction with which she has trouble dealing. Some days she can get up and be fine and needs less oxygen. Other days she gets up only when nature calls, but that exhausts her.

Maybe my words leap too readily from one thought to another as I have the full story in my head and you all do not. Even when rambling, and I think thorough, I realize I am assuming understanding of the situation that everyone may not have.

EDIT: Believe me, I will do anything and everything to celebrate that her condition will allow. I have no idea what that condition is from one day or even one hour to the next. So I was airing my frustration over that as much as anything else.

959

I just wanted to pop in and say to @Tyjenks that your posts here are amazing. Man, I wish things were different for you, but if it’s any consolation, your words inspire me to love my wife even more.

960

Having followed this thread from the start I can’t imagine reading your posts in anything other than the most sympathetic light. Thanks for sharing.

961

Good, because what you wrote read as pretty damn cold and that was not the guy that I had come to like and admire. Maybe I am out of bounds expressing my feelings about your experience here, but this part hit me where it hurts and I hated to read what you had there.

962

No worries. But honestly, sometimes your thoughts in this situation are cold. You can ignore them and feel bad for having them. You can stuff them down and ask forgiveness and pretend they never crossed your mind, but they are still there. They are also at times illogical. They are also some times hurtful. The best you can to do is not dwell on them and let them pass by.

They are very infrequently hopeful once you move onto hospice. I will never again know what exactly is causing the pain or nausea or discomfort as we no longer do diagnostic tests. I will never again be able to allay her worries by pointing to what the doctors are doing. We aren’t treating the cancer we are, on a hourly basis, covering up what she is going through with medicine. I hug her and talk to her and nod as she blames it on dehydration or getting up too fast or doing that load of laundry. My heart aches that I cannot do a single thing as the cancer must be advancing. I continue to get what she needs whenever she asks. She apologizes for being a bother and I smile and say don’t worry about it. We have a saying about worrying about each other or helping each other when one of us is sick that “That’s part of the deal” when we signed on for marriage. All of this wears on you and can create some very disparate thoughts/feelings.

I am sure when mad or fighting with a significant other, we all have some pretty bad thoughts run through our heads to which we have trouble admitting to ourselves much less out loud. I have long since bottled up any normal marital issues and irritations and for the most part successfully set them aside. Sometimes, the frustration in your mind expresses itself in ways you wish it would not. For me, it has transferred from thoughts I have in times of anger to thoughts I have in the midst of hopelessness. I want people to know not to beat themselves up about those feelings and thoughts. They are normal. Acting on them in spite or out of malice is certainly inappropriate and I do not think I have once done that. I did not think that is what I was advocating or describing here either.

963

All of that said, she texted me to say a friend from out of town is over right now. The pain pills did their job and they are engaged in some “sit and be fit” video. This is another literal example of when, before I leave in the morning, I am making her breakfast so she can take her meds and this morning supplementing them with additional pain meds due to breakthrough pain and she says she is going to rest all day. At these times, she seems miserable and usually is. Today, within 2-3 hours, she is fine for the moment and engaged in a light activity that I would have never foreseen. It is a roller coaster of not only emotion, but expectation for which there is no predictor.

She will most likely be wiped out when I get home and may or may not have some lingering additional effects from overdoing it. However, I rarely say “take it easy” unless we have a big, important event coming up for which she needs to rest. Her friend is over and they are enjoying themselves and that makes me happy for now and my worry is on hold. Her best hours are in the middle of the day and I always encourage people to either try to get her out or come over with food and visit. That makes her happy.

If that means she is out on our anniversary as she has worn herself out, so be it. That day could be a great one or a terrible one irrespective of what she has done leading up to it.

I guess my meandering point about the anniversary is that fixed days of celebration at this point are not always possible. We celebrate and enjoy her on the days she is up to it. Christmas, she was in bed the entire time and did nothing involving visiting family’s houses or traditions. That came three days later and only briefly as she was recovering from brain swelling from the radiation. Our celebration of our marriage will be the days she is up to it. That may be tonight, on June 8th our actual anniversary or next week, but will most likely be sprinkled throughout those days and whatever days we have left.

Forgive me if I come here at the worst times to express my desperation.

964

Nothing to forgive. Enjoy the celebrations as you may.

965

Not on you at all. I have nothing but respect for you and hated to see you getting down, but my “tough love” message was ill conceived and executed. My sincerest apologies.

966

Forget about it. It allowed me to better flesh out my thoughts and add new ones, which appears to be constructive for me in getting it out of my head along with somewhat working through it in a different space. And with text rather than having it all bouncing around in my overly analytical head.

968

I don’t know Tyjenks, not sure we’ve even played any games together or anything, but I keep thinking about this thread.

I kept hoping you’d post that there was a new immunotherapy therapy that was finally helping or something. God Cancer sucks.

969

There are new things and she started off on a new one about 18-24 months ago that studies had proven very successful with her specific type of metastatic breast cancer and it had been rushed through the approval process as a result of those studies. It simply did not work. There are some trials, but once metastatic breast cancer makes its move to the brain, you have often failed one of the criteria for trials. For me, holding out hope for a miracle new cure does not help me deal with things. I can’t face more disappointment and have to focus on the reality of the situation. I certainly understand where that hope is necessary and it is a possibility in some cases.

Honestly, throughout the kids’ school year, I was hoping she would make it to Summer. Two days ago, although I was very nervous, my 16 year old actually drove her to the YMCA and they went to the pool for a couple of hours. She shuffled around and needed to be supported and there was no elevator!! However, I am guessing she was determined to make some memories with my oldest daughter while the youngest is at camp. That is a lot to take on for a 16 year old. Driving their sick and weakened mother to the pool knowing how shaky she is. She didn’t really hesitate. It is a small thing that we easily took for granted not too long ago, but for me it was huge and I am very proud of her.

My wife did have increased pain the morning after that trip and is still experiencing some in the early morning hours so something with her extended release pain meds may need to be increased, but I am really happy they were able to do that and I have bragged on them both to whoever will listen.

As for the anniversary, she was wiped out. Her big plan was to go to Costco. She was excited about that and we would have anniversary hot dogs in their food court. Again, something she used to, believe it or not, enjoy that she has not been able to do in months. We did not make it. I stayed home and we watched some recorded episodes of “nobodies” on TV Land. Hilarious show about writers in Hollywood produced by Melissa McCarthy and Ben Falcone (her husband). Very uncomfortable in a Curb Your Enthusiasm kind of way, but great. The three main people were/are part of the Groundlings so many others from that group appear off and on.

I hope everyone here who is struggling with this or any disease or is a caregiver or has a loved one that is, terminal or otherwise, knows they can always send me a PM if they want to talk. Opening up with friends, family, strangers, anonymous people or at all can be difficult. Laying your soul bare helps me, but it may not you. I don’t have a lot of stellar advice or words to say it will all be OK, but I can listen and say “Man that sucks” along with you if you want to get something out that you do not wish to in the thread. You will all make it through as I will. You will be a different person most likely, but it all part of the deal and a part we must endure.