Holy cow that is so wonderful to hear! I hope your wife feels some comfort that we’re all pulling for her. And of course you too. Out of curiosity which hospital did you have this done at? The one close to you or the 45 min away?
Oh, absolutely the one further away. The closer one (Fair Oaks Hospital) has a great breast cancer unit and I’d absolutely recommend it to anyone going through that… but for everything else Fairfax Hospital is absolutely the best in the region unless you want to head north to Johns Hopkins.
Pleased to hear it went well!
Hooray for things going well!! I love hearing successful stories and good news. I’ve been living with very little of that. As self involved as I was before all of this happened with my wife for the second time, I might have suspected I’d be a little envious of another person getting positive results when my family has not, but that could not be further from the truth. The facts are that some people make it and some don’t and I have come to grips with that. All that rambling to say I am so happy for you and your wife @Tin_Wisdom
Here is an update from some time in the maybe three months ago I never shared, but it was saved here:
I’ll give another update on the wife. While she was off chemo to get the brain mets zapped with radiation, the other cancer progressed and specifically in her liver. This last chemo she started a couple weeks ago pretty much “has to work” or her liver function will be significantly impacted. Even with it and if the radiation worked, which we won’t know until January as you have to wait 2 months for the radiation to finish doing its thing and the brain tissue to repair itself, the prognosis is pretty bad… We told the kids about the movement to the brain. We told them the recent scan showed the other cancer is worse.
The oldest is handling pretty well. The youngest I took to the ER for the first time ever as she had chest pains and couldn’t catch her breath last week. it was just the stress. All the tests were fine. This week, she has thrown up a few times and the last time somehow tore up her throat as it was bloody. I took her to the Doc and she is fine. It’s just the stress. I’m taking her to weekly therapy appointments. I believe they are working, but she is missing a decent amount of school. They are being understanding and is doing well regardless. She is just worried about her Mom. It’s hard to know when to try to convince her to stay and when she needs to be home. It’s hard for me to see her helplessly struggle as her Mom also seems to be doing.
The wife is slowly coming to grips with what her Mom and I already understand. It is difficult all the way around all the time. She did OK after the new chemo and then was in bed for three days feeling horrible and we geared up for her liver giving her trouble, but we took her in and that wasn’t it. Then she went to dinner Friday and a movie Saturday, but now has been in bed since Saturday. I try to find things for her to eat and she eats a couple bites. I try to keep her on her meds, but she wants to have food in her stomach. Even when she takes everything she is supposed to it is not giving her much relief. The pain she says isn’t too bad. She just feel bad. She has zero energy. Her heart rate spikes when we take her anywhere and I think her breathing is being somewhat limited.
_I said to someone the other day that it is the grind that wears you down. There are times to get away from it for me and the kids, but not for her. And even for us, it is never very far. It’s exhausting and with her poor sleeping, I’ve just been on the sofa for the last 2 months or so. I’m 6’4", but it sorta works. _
It’s so hard to be patient with everyone all the time. With my wife, with the kids, with people wanting to help. I feel like I’m a Cancer Manager and I hate it. I can’t relax away from home, but I also don’t want to go home to it. Most of November I spent with her at home. Work was thankfully slow or people took a couple things off my plate and all are very understanding. I would doze on the sofa during the day with the phone close and she’d text me from the bedroom when she needed something. That’s kind of the process now. She’s in bed, the kids and I go about our day as best we can and I make trips every hour or so to check on her if she has not texted. Many trips to the pharmacy and store to get what she needs.
__We do have a good support group for which I am thankful. It’s been about 21 months since re-diagnosis and I’m tired of needing help. I’m tired of whining here and to friends and to my therapist about what seems to be the exact same complaints, but their not because it is worse. Gradually, every day she has felt a little worse and the reports have gotten a little worse. Many days I want it over. Or I want to tell the kids the truth so I don’t sit here with the knowledge of how dire it is while they think she might have a chance even though they know it is bad. I want to tell my wife to…_.and that’s where I stopped
I thought she was done around Christmas. The fluid and swelling that were after affects from the radiation made her close to not being lucid for several days around Christmas. She didn’t get up Christmas morning. She didn’t go to any family gatherings. She began running a fever and I took her to the ER Christmas night. She was almost unresponsive at times There was a little infection, but the biggest thing that brought her back was steroids. They reduce the swelling and took the fluid off the brain that was causing so much pressure to make her so lethargic and out of it. Within a couple days she slowly came around.
We got the MRI results and all of those tumors had not progressed, shrunk or disappeared. We were not expecting that as her weaknesses and inability ot get around had increased in the interim. She thought it was muscle atrophy, the radiation oncologist called it something else resulting from the radiation similar to atrophy, but now we thing, as she has collapsed, for instance, trying to cross a parking lot, that it may be sensory motor seizures. So the seizure medicine has been increased.
Well, it has now been about 2 years since her re-diagnosis, we got more bad scan results specifically in her liver and lungs following the third batch of chemo did not work either. We were given the choice (or rather she was) of trying a fourth line chemo that had maybe a 15% chance of effectiveness or stopping treatments. The side effects on her skin alone, through rashes and pain, in addition to the nausea, poor sleep, loss of appetite have a cumulative affect and she is tired of it all. Three weeks following those results, she has decided to no longer receive chemo. It was more anti-climactic that I has suspected. The actual decision. Hearing the options after more bad results and the detailing of the expansion of tumor sizes was the hard part.
We are also rounding out a 3rd time of trying to wean off steroids which help with energy and appetite, but result in fluid retention throughout her whole body but specifically in her lungs. She coughs all of the time and that has only intensified over the course of the last year or so. She takes something and supplements with over the counter Delsym. What happens when she comes off the steroids is that she just loses desire to eat and sleeps constantly. To the point I am tasked with waking her up to eat to take her medicine. Some mornings her head hurts and her Mom or I spoon feed her applesauce, she takes her meds and she goes back to sleep. When on the full dose of daily steroids, she is more awake and can get up and do things for an hour or two. It’s been quite a roller coaster where that is concerned and she only vaguely understands how different she is, although she is mostly lucid as opposed to around Christmas.
She has not been able to drive since October. The radiation Oncologist gave her hope she would after the MRI results, but her recent extreme weakness means I don’t think she will ever drive again. That has been a challenge with which I have had help from family friends and neighbors and my oldest just got her license and that should help.
The next step is convincing her she needs hospice. I reinforced with her that the quitting chemo was not “giving up”. It was choosing to fight through stopping something harmful to her body that was yielding little benefit. Living was still fighting. However, she sees hospice as the last step before the grave. The doctors, among others, have expressed how hospice has tools that could immediately help her and aside from that, it often lifts significant burdens off family, cargivers and children in the assitance it provides. She is resisting it and I can cerntainly understand.
AS for me, I hate waking up every day. The thoughts of any guilt for any feeling that enters my brain have been burned out months ago. The biggest fight now is probably a little resentment, a desire to run away and a desire to simply give up. Mostly, it is the wanting it to be over and the relief I know I will feel when that day comes. It’s been since October sleeping on the sofa and I think I’ll be getting a fold out sofa soon. The comfort from two or three beers a night to slip off to sleep has become more and more fleeting. A few times over the last month, I have gotten everyone settled at home and gone out to drink to excess. Incredibly stupid, dangerous, selfish, all of that. But those are the few moments I am free. There is always a price, though, and so far it hasn’t been too high. I know I have to stop that for all the reasons I have beat myself up over numerous times.
A minister who has thankfully given us some more space, after I gave him the most recent update, says he hopes in these hard places I can find some peace and hope. THERE IS NONE. The hope is that it ends and that end only happens through her death and worst of all my kids losing their mom. The peace will ONLY come when she is gone and when we get past a good portion of the pain. People who have not gone through this can understand some of the loss and pain and fear, but they cannot come close to simulating the daily and cumulative grind on all of your senses. The toll it takes every waking (and some sleeping) second(s) mentally, physically, emotionally. Every facet of your life is affected. A couple people say “You are not the cancer”. Yes, everyone is living with the Cancer. The cancer has eaten into us much as it has my wife. It is effecting our systems. A portion of us IS dying. There is no safe space where we can step away and enjoy a day with my wife. Where the cancer does not exist and we can forget about it. Sitting up in bed is labor for her. If we had a bigger house, she could not walk from one end to the other in her current state. So as much as the books and philosophies surrounding “Living with Cancer” like to promote certain ways with which to deal with it, the truth is, it is mostly pain and suffering and struggle every waking moment from which there is no time out or break.
I may come back and clean this up a bit, but I’m so tired. My body is messed up. I got flu and walking pneumonia together in the midst of all this a couple weeks ago and I do not think I have recovered. I still feel hungover from 4 nights ago. I am behind at work. I need to get the kids to practices and my youngest to therapy tomorrow. People do offer to help and I accept, but there are things as father and husband I have to do. I am also the steadying influence with the kids. So while I have delegated certain things to other people where they are concerned, they need me there for certain things and for other things, I feel the need to be, so I can be a constant. So they can worry less and still get through very stressful and important times in their lives. They are without their Mom all the time. She does not tuck the youngest in. She quit driving the oldest to school. She has been to none of their lacrosse games. I have to fill a lot of that space. That’s my job, but among all my jobs, I feel like I half ass them all and not helpful enough in any of them. SO there is no satisfaction gained in work, I cannot help my dying wife or with kids as I am straining to do things with them and attempt not be irritable with them.
Thanks for listening,
Tyler
Thanks for posting Tyler. I was thinking about you just the other week actually – I resolved to send you a PM, but then saw that you had gone silent since early January… and I just kinda chickened out.
I’m still humbled by your dedication to your wife and your kids. I’m actually reading all this at work and trying not to tear up. You’re in a spectacularly shitty place, but hopefully you can understand how heroic you are being. If you can, please continue to post updates and of course let us know if there is anything we can do for you, individually or as a group.
Tyler- that’s heartbreaking and I am so sorry. I’ve been wondering how things have been for you guys since your last update months ago. The only piece of advice I can offer is when we switched my dad from radiation/chemo to hospice, it was cathartic and a kind of relief. No longer did we live test to test or wonder what the future would bring. It was an acceptance of the inevitable, but more importantly it changed the entire focus to making him happy and comfortable. No more blood tests, MRIs, etc. Just pain meds and enjoying time with him. While my dad (he had a glioblastoma) was only occasionally lucid, I wouldn’t give up those last couple of weeks in a ‘calm’ setting for anything.
P.S. She’s texted saying going back on the low dose of steroids appears to be helping somewhat. She feels better. I am glad she is. But does this mean a further delay in accepting hospice? More hope that she’s drive again? Are the steroids extending her life or only improving it moderately s the cancer continues to eat way at her liver, lungs, spine and sternum and wherever else they aren’t even bothering to look. There are no good answers or good feeling at this point and it is hard to convey what a fucked up mess that feels like.
I’m in tears… I’m so sorry, that I can’t offer you more than my thoughts and best wishes.
This is what we need to get through to her. I am ready to simply tell her flat out, but I don’t want any frustration bleeding into it. I have never broken and yelled at her, the kids, clients or co-workers. I am not sure how I don’t have an ulcer or a blood vessel exploding in my head.
I felt the relief of the doctor telling her that the next chemo has little effectiveness. I felt the relief when she opted to not do chemo. I’ve known and dealt with her resistance to at first mentioning hospice and now talking about it although it gets slid into conversation here and there. Days like today, I want to go home and tell her “Look, this is what we need to do”, but I will never do that. It is her decision. She is dying not me. I’ll have my life to continue once this is done and she will not.
Thanks to you three.
I have tears running down my cheeks right now. I can only imagine, or in fact I can’t, how I would feel if this happens to my wife or my two daughters, safely in bed one floor down, and I’m so very sorry that you and your kids have to go through all this. That this is what it turns out to be, and that nothing more can be done. That I can’t do anything more. I can only hope the last period of time you have together will be as peaceful and troublefree as possible under the circumstances, and that you will be able to cope during and after that period. For whatever it’s worth, from a stranger on the other side of an ocean, my thoughts are with you…
Thank you for your kind words,
This is the other thing I struggle with as I mentioned previously. The point at which we have arrived has been a grind. The realizations have dawned on me over what seems to be a few short months in forum time, but those realizations are hard earned. Telling people where we are after that amount of time away becomes a brutal affair when spelled out in a few paragraphs. It is a stark contrast. It makes time so elastic. Only two years since rediagnosis to this terrible news seems brief when you have been alive forty plus years. But they have also been the longest 2 years of my life. The months since October and the brain diagnosis seem like 2 years ago.
I hope my words serve a purpose other than bringing people grief. I see audit clients each year for a couple weeks. We get to know each other and each other’s families and we share things. I am on the audit during which 2 years ago we were panicking over results. So sharing news with them is something they want, but is also hard to tell and for them to take. I have gotten so I preemptively send an email to make it easier. It means I can get everything in I want to tell them and they don’t have to feel weird about or afraid of asking. I don’t mind talking bluntly about any of it. However, I completely understand that that bluntness or simply the stark reality of it can really have an affect on people.
Not sure there was a point other than I appreciate people’s concern and genuine feelings they show, but I also dislike the fact that I may be causing people to be so sad or suffer in even in a minor way. Our world has so much of that and believe me, the election and presidency coinciding with my wife’s illness has made difficult days almost unbearable.
If it serves no other purpose, this forum is exactly where you can vent without tact, grace, concern, or regret.
It’s heartbreaking to learn what you and your family is suffering through, and of course we all hope, I hope, for the least pain and the most happiness that can come out of such a dire circumstance. But you’ve communicated your emotions eloquently over the year, and there’s no need to trouble yourself with our suffering.
Tyjenks, any grief we experience for your family is more than accounted for if your own frustration, grief and anger are in some small way alleviated by our acceptance of your release. We know you ache for a more perfect world, but it’s OK to curse and rage to us here without recrimination. All we can do is let you know your anger and heartache is received only with understanding and compassion.
I’m so sorry Tyler. I had to go walk around the office building after reading this, I feel so frustrated. I wish I could do something. S! for all the stand up job is all I have. I’m glad you can let this off your chest here. I have my own philosophies about life and death, but I truly hope you and your family can find some peace at the resolution of this terrible ordeal.
Couldn’t say it better. @Tyjenks if coming here helps you in the least, absolutely feel no shame or disappointment for doing so.
Tyler, the important thing is to not feel guilty about how you feel. It’s normal for you to want it to be over. It’s normal for you to want to return to some sense of normalcy, to lift the cloud over your life and that of your children. To move on.
My dad’s ending was a little quicker. It took about three weeks. Three weeks of seizures, insulin injections, catheters, and collapses. It was terrible, miserable, stressful. But when it was over, we were relieved. It’s terrible, but that’s how we felt. We could finally relax. We could finally drink, like, really drink. The windows were opened, food was brought out, music was put on. It wasn’t a party, but it was better than prior three weeks. It was time to start healing.
Everyone resists hospice, but hospice helps a lot.
Don’t feel guilty. Try to keep it together. And know that things will be better.
Good luck.
I don’t really have any words, @Tyjenks. I wish there was something I could say or do to make any of it better. For what it’s worth, just know that you have another Internet stranger in your corner and that I’ll be thinking of you and your family.
I can only imagine how hard it must be for you, Tyjenks, but I can clearly tell from what you’re sharing that your children and wife are blessed to have you. You’re doing one of the most important things a person can do: making other people’s lives better.
-Tom
Tyjenks you don’t need to worry about venting here, I believe we’re all more than happy to sit down and listen whenever you need. I can sympathize about being the rock that has to bear the brunt of the storm to keep everything steady. It’s not cancer but mental illness in my case , but I know that weight. The fatigue, the pressure, the doubts and the guilt. It’s certainly hard to see it when you’re stuck in the middle, but you are doing great things for your family. Wish I could give you a big hug.
Tyler, I’d like to think that I could hold up and do right by my wife and family as you have during these impossible circumstances, but I’m certain I couldn’t do it. I couldn’t muster up that much grace and perseverance for that long. My wife was in the ICU for just a couple of days and I already wanted to yell at people, even though I was 99% certain she would be fine in the end. If I was in your situation I’d be no use to anyone. As Tom said, your family is truly blessed to have you.
Speaking for myself here, but your words most certainly do serve another purpose. Sure, they make me sad, I can’t deny that. But your words also make me realise how lucky I am at the moment, for not having to deal with stuff like that. It made me hug my wife and kids an extra time, and with more attention then would normally be the case. Not just today, but tomorrow again, and so forth. And, when the day comes that I do get into a similar situation, as we all eventually will to some degree, I will definitely strive to deal with it with the same strenght you have shown in your posts, and be supported by that.
So, don’t worry about the grief that comes with that. It’s not a problem at all, at least, not for me. And even less so if it helps you, in whatever small way.