It is both inspiring and agonizing to watch. Such a simple task that is so laborious for someone who after her first diagnosis, treatment, mastectomies, reconstruction and then being deemed clear around a decade ago, then began running and did several half marathons. She misses running tremendously. And now she breathes heavily in doing these things and has to take breaks after very brief activity. Her desire to fight is still very strong and it is a delicate line to walk to encourage that fighting spirit while cautioning her and discussing options that will continue to erode her sense of independence.
The other crazy thing is that I can’t remember the last time I cried about any of this. I read what I write and it all sounds horrific as if I was watching it on a TV show or in a documentary and I cringe that other people are experiencing it all through my descriptions. I get reactions from people I talk to online or in person with tears in their eyes. I have teared up a couple of times I think, but I joke that I feel like a robot a lot of days. Now the anger, frustration and some depression are still there to let me know I am a real boy, but some amount of grief has been dealt with and supposedly the other part will catch up later. It sure doesn’t feel like I have any grief left in the tank, however.
Her oncologist called. Confirmed one last time that she remains sure she does not want to try any more chemo and then brought up hospice to which she agreed was the best choice and that maybe then “Tyler can get some rest”. The discussions had helped and it was not a tearful admission. She knew it was time. A friend was over watching TV with her and I took my youngest to her Lacrosse game.
To say this is all surreal in any sense of the word I have ever used it is an understatement. It is the right decision, but the feeling that I was assisting her to come to a decision that she made, which was in no small part to help me is still difficult to accept. I wonder would she have willfully made it at this point or ever had I not shared my struggles and was conspicuously worn down even though I tried to hide it. My guess is her decision was a mixture of things. To help her family and reconciling her thoughts to the knowledge that she needs more help.
Tonight I told her it was the right thing and said again, it doesn’t change where we are now. It is just going to help us all. She teared up and says she just wants me to get a break, but there was no other sentiment behind it than honesty and love. Our youngest came in and it was bed time. She asked if Rebecca was OK and she replied “You know how mommy gets sad and cries when she is tired”. I said we were just talking about how much we love each other and crap. Only months ago this scene would have thrown my daughter into a worried frenzy as she thinks and overthinks as much as I do. She smiled, hugged her mom goodnight and kissed her and went to get her cat who most nights lays by her head on a pillow until she goes to sleep. Her therapist and her growing ability to cope with things have made her a strong little 11 year old.
I am sad and relieved. I am sad for all of us. The kids, her friends her mom and brother and sister and everyone who loves my wife. I often credit the reason we know so many people and the reason we do have such a great support structure to Rebecca being such a good person. Everyone loves her and some have expressed how they are not ready for her to go. I just come with the package and I am tolerated. :) People have assured me this is not true, but I still have my doubts.
There is so much wrong with this, but it is certainly an inescapable truth in life that we all face death at different times. We don’t get to choose and our goodness and worth do not factor into the time we have. I am at peace with that, I believe. I hope all those who surround our family with love can reach that peace as well, especially our strong and amazing daughters.
@tyjenks so very sorry. Do you live in Michigan? When our backyard is not a messed up zoo you all can come over to for some spiritual healing. Not sure if it was mentioned, but THC is supposed to be great for people in your wife’s condition, and maybe it would be excellent for you too. Help you de-stress, remove anxiety, and help you sleep.
I think something that gets lost much of the time is that when one family member has a terminal illness, it affects everyone in/close to that family. The people that don’t have the illness may be suffering terribly, but it’s hard to express that without feeling guilty or being perceived by others as selfish. After all, they aren’t the ones that are dying…yet a part of them is. I’m sorry your wife is suffering, but I’m glad you have a place where you can talk about it without being judged.
Thank you both. AS it settles in and I am not operating so much in crisis mode and we await what comes next, the weight of it is increasing, but we’ll make it through like everything else.
@jpinard we are in Birmingham, AL. SO a little far, but we are taken cre of in that department. It has helped Rebecca considerably. The fact that Alabama is a decade plus behind everyone else and we exported that fucking asshat Jeff Sessions to DC to look into another war on drugs and specifically marijuana laws is infuriating.
Following research by me and talking to a dozen folks, we decided on a hospice care facility and we met with the admissions nurse and then the nurse that will be my wife’s case manager. The kids were there for the latter meeting. The woman was wonderful as expected and I made sure the kids asked any questions they wanted to. My youngest whispered her questions to me although she is rarely shy. While we had not made this all out to be a big thing, it certainly still felt incredibly heavy on me and the kids must have felt it as well. My youngest who has so much anxiety (for which she does receive counseling and medication) was telling friends about it and how encouraged she was that her mom would have help. Her ability to cope and her resiliency has changed so dramatically. Both of my kids have been so amazing and I feel very fortunate.
The nurse will currently come once a week. I feel like we could use someone every day from about 8-10 just to get her started. However, my wife wants to keep as much independence as possible. Last night I rolled an oxygen tank in the bedroom for the first time. She has struggled with coughing and getting a good breath for a while and this was suggested as it may possibly help. I say all that to reveal how something that in the end is relatively simple and I was able to handle so easily, can represent an almost monumental shift in care and expectation. I rolled this metal tank in there for the first time, turned it on and gave her the tubing to put in her nostrils. It helped a little and she went to bed with her nighttime meds. My daughter asked “Is Mommy doing OK?” and it was with concern, but not the fear with which she used to speak that would often consume her especially right before bed. I said we are making her comfortable and she is doing OK. And that was it. She still had a litany of other questions as she attempts to delay letting me go at bedtime, but they were all mundane and spat out as they popped in her head.
I really am not going to chronicle her decline and death here. I did want to add about the hospice and how easy and helpful it is going to be now that it is underway, but none of that lessens the magnitude of the transition from cancer treatment care to comfort care. Comfort Care actually being the name of the hospice facility. Apt.
Dude, you talk about whatever you need to. I think it’s good you are involving your kids on the periphery of things. I know they probably can’t quite deal with all the aspects of what’s happening, but having them in that meeting and letting them feel like they are part of the process and letting them ask their questions instead of trying to shield them from it seems like a good call to me.
I agree with Misguided. Please share as much or as little as you want to. You are not a burden to us. We are here to support you.
As unpleasant as this thread is, it is my favorite on QT3. It represents strangers coming together to help one another in our times of needs. I found it a great place to share and get some simple words of encouragement when I had my ordeal with my dad a year and a half ago. If anyone were to ask me why I spent so much time hanging out on an online community, I’d point directly to this thread.
It has been challenging to say the least. I knew hospice would come eventually. I was even ready for it. I knew this meant the end to treatment of the cancer and a beginning of making her comfortable through treating the symptoms. I knew new people would be in the house and possibly medical equipment. My rational, logical mind was completely prepared until it all started. We cancelled a recent Brain MRI and visit with the radiation oncologist as those tests are only used to determine any progression and possible treatment. The amount of progression no longer matters and there will be no further treatment.
Rebecca began taking oxygen pretty regularly and it has helpedopen her lungs and her breathing is not nearly as labored and her coughing has subsided somewhat although she remains on two medications for that. The visual of wheeling the O2 machine into the bedroom and listening to the hum as she uses it more frequently was difficult. Rebecca’s questions about visits with doctors we will no longer make really brought it home that we are pretty much ignoring the cancer until it causes a new syptom and then we will attempt to minimize it.
She had not suffered too much pain other than the occasional body aches and headaches. Last week on Sunday she began getting severe, sharp and constant stomach pains. Most likey from the larges tumor which is in her liver pressing up against other organs. It took about 36 hours to get it all resolved and under control. She bumped up to a stronger extended release, morphine based pain medicine. It has worked and she is back to being relatively mobile and comfortable.
She missed all of both kids lacrosse games this year, but the youngest’s coach recorded one and they watched it on Mother’s Day together. THe pain meant she missed a musical performance at the Elementary school, but with it controlled, we are going to do everything we can to get her to the 5th grader’s graduation out of Elementary to Middle School at which she is giving a speech. That may entail taking extra pain medication or a portable oxygen tank.
However, yesterday, she says she still feels the chemo (which I think we stopped 2 months or so ago) leaving her system and feels better. She went shopping without the assistance of a wheelchair or walker with her mom, instead resting on the shopping cart. SHe had not done that in months.
The hospice people themselves are wonderful and caring, but that did not stop some passive aggressive second guessing when my wife was in pain for those couple of days. Why they didn’t do something different? Why did it take them an hour to call bac? Things I thought we were clear on, but my wife’s Mom talked to her doctor and nurse friends and they all had input. Hospice has the case manager nurse, a medical administrator, their own pharmacist, their medical doctor, Rebecca’s file all with them when they make a decision. So I had to address my mother-in-law’s questions to the nurse when my wife and I had no probem, but I wanted the whole thing squashed before bad feelings started. AND I HATE Passive Aggressive Bullshit. To my mother-in-law “Should I bring up the response time you mentioned” Her response “Perhaps”. All after she had spoken with the nurse but saw no need to bring anything up and would leave it to me.
Anyway, that all got resolved last week. These people do this for a living and while doctors and nurses outside of hospice have a wealth of knowledge about all manner of things including pain management, these cases are different and we should give the people we hired a chance to do their job before we start Monday morning quarterbacking every choice.
Kids are doing well and wife is doing well all things considered. My depression and sadness about it has only increased. I think much of that is due to being tired. However, also, I don’t know what symptom comes next and knowing the cancer is being left to its own devices and it could manifest progression in multiple ways is scary. How long until she can’t bathe? How long until she can’t use the restroom? When will the increased pain breakthrough again? How long will this last? How do I plan anything knowing the very next day may be shit?
The last two days she was able to get up and make her own breakfast and take her morning meds. That has been rare over the last several months. It has also left me with a perverse reaction that I can only imagine occurs with others. This could mean she will struggle on longer. That’s good. That also means we will all be witnesses to the struggle that can stretch for months. Seeing her in pain and yearning to drive again and walk around the block is difficult. However, I always make it knowing that it won’t be like this forever. She will be free of it and we will eventually be free and can get back to a relatively normal existence. I do want that to happen in whatever time period is ordained by God or dumb luck. However, the accumulation of pain and exhaustion and anger and helplessness and hopelessness does not get drained away once a week when hospice visits. It builds and stays.
I don’t care much about work and it is hard to do most things every day.Every morning I get up and I dread the day, but do the things I am supposed to. I ignore friends and family members calls and texts as that takes energy I do not have. I don’t want to talk about how Rebecca is. Or how I am doing. Or how the kids are. OR what we need. Or how you are eager to help if only I could tell them something. I appreciate all of them, but my ability to deal with all of that has been slowly waning. My Dad tells me he feels guilty with a tear in his eye because they were out of town for a year when I told him there was nothing he could do. I don’t need your feelings of guilt or inadequacy. My Mom offering to do whatever we need, but hates getting out of the house to simply go to the store and won’t attend meet ups due to social anxiety and missing all of my kids games due to random migraines or stomach issues. My mother-in-law lightly suggesting that I get the kids to do this or that or fluffing the cushions and pillows and sofas when someone is coming over.
Basically, all of the things that irritate you about your friends and family and acquaintances are amplified and increase in frequency during times like this. All well meaning, but often done as a means to make themselves feel better about helping or contributing in some way. Normal human reaction, but now that it has been two+ years of it, some days it is too much. If I need something, I will call you. I will tell you.
I am happy that she is feeling well lately, but at the same time I dread every day along with the unknown length of time this will all last and the affect it is and will have on the children. They witnessed a lot of suffering and are pretty good at coping, but I assume they have a finite amount of room in their minds with which to deal with these things before they crack or break.
I dunno. Not making much sense. I think I have said this before, but, I want it to be over. The only way for it to be over is her death. That goes from a horrific thought to one I desire and that can be in the space of a day. It sounds brutal, but it is impossible to convey what this all is like unless you have been through it for every waking moment, every day for a couple dozen months. Every part of me feels ground down and you do feel a shell of what you were before this started. SO much so you can barely remember what that was. A person that did not discuss Metatstatic Stage IV Breast Cancer IV several times a day, a person who doesn’t have multiple reminders set about when to get pills out of the pill box, a person who isn’t always thinking about what the next day holds as far as pain, nausea, exhaustion and weakness. We used to be a couple that got to go out to eat or a movie or went on vacations. We did stuff all four of us as a family some time ago.
After about 700 or so days of that, I compare it to Groundhog Day and it being one of your worst days you have to repeat. However, as you change it up or repeat the same actions, there is no way to improve things and eventually another day of decline will occur that will rob you of another piece of what you had before it started. There will be no trigger to wake us up again and move us to the next day. We will just wake up and the end will have occurred and then we have to figure out how to live a completely different way. A widower and kids with a dead Mom. That’ll take some getting used to whenever that phase starts.
No, this is entirely normal, I think. When my grandmother got aggressive brain cancer it eventually caused her to lose the ability to speak. This was the moment where, for many of us, we just wanted it to end peacefully. Once there is no hope for cure, then minimizing the indignity and pain becomes very much the thing. And that was for a grandmother, I can only imagine how much more acute those feelings are for you.
Very small suggestion: but if you don’t have this set up already, make a contact group so you can send out text or email blasts to everyone all at once. Tell them that you appreciate their thoughts but that you simply can’t keep everyone updated individually. They will understand.
We do have something similar with church and one or two people are in the loop. With family I do all the close people at once. Then, for everyone else, we have done a relatively thorough Facebook post when a major update/change has occurred. The last one discussed the decision to continue with chenmo that was likely to be ineffective or stop treatment. Then we went silent as far as any decision so more people are wondering what is going on and whether she quit chemo and many know nothing about hospice. Talking about all of it made this step more real as it has for other steps and this one has been the most difficult.
There are also co-workers and my clients and any number of extended acquaintances that will drop a note or a private message or call. Again, thankful that people are concerned and are supporting us, but it is a lot and it is challenging to cover everyone as they are in many different pockets of our lives.
My wife does want to put out another such update, but I am going to need to do it and have her OK it as, understandably, the less she has to vocalize where we are with all of this the easier it is to compartmentalize and function.
Good. Just something I’ve seen my mom do while my dad has been in treatment. People don’t understand that the sheer amount of well-wishing and questions (with the best of intentions) can be exhausting.
Yes. One person may not think they have checked in in a week or two or a month. However, if you have 100 people at your accounting firm, a couple hundred at church, family, extended family, friends, your kids friends’ parents…and on and on and if they decide to check in once every couple of weeks, it adds up. I don’t mind sharing the latest info, but I am passing a point where energy is sufficient to allow me to share.as often as I get called on to do so.
For my mom and dad both we used the site Caring Bridge. It’s not perfect, but it’s a free & easy to access journal you can update. Post a link to it on Facebook and text people, and then you only have one place to do updates.
