Friends---
I have been on the wonderful site for several years and have received (and I hope also given!) a lot of support.
My own battle begins tomorrow in earnest as I begin a 6 round chemotherapy for my lymphoma.
It's been just over a month since I found 'the lump' that sent me reeling into the Cancer Center here--I've had tests that only the clueless would agree to--and tomorrow, the die will be cast.
R-CHOP, as it is called. 1 day of infusion (the 1st is bad, so I hear) as they introduce, one by one the poisons and then dial back until I can stand it, then another one--well, I don't care too much about the mechanics--I just want the time to fly.
If all goes well and I tolerate the infusions, they make the time between then slightly shorter, so I could be done as early as Sept 1st--or who knows when, if I don't tolerate it well.
Too much time spent on the internet---people say it's the worse thing they've ever done, a lot say they scheduled infusions for Friday so they could be back at work on Monday.
And I WILL lose my hair. Oh well. I hope it grows in pure white and curly.
Dh is going to attempt to be my caregiver---but has already said he cannot stay with me tomorrow (8 hrs)...as I get the first infusion. Maybe that's for the best. He's really struggled with this--he is not a natural CG and tends to just go to bed and leave me to my own devices.
Just need words of support now this thing is real. I will be honest on this board as I might not be around others: I am absolutely terrified beyond reason.
I hope and pray I can be brave and that the IV's go in easily--and that any and all barfing makes it into the appropriate place (not DH's leather interior of his car!) I hope I can have enough 'good days' to out weigh the bad ones.
Funny, I don't worry about a cure, because we caught this so early---but that would be nice, too.
This has humbled me a lot--we always wonder why things happen to us and I am still trying to figure that out. Probably no rhyme or reason--stuff happens because we live and this is part of life.
I thank you in advance, I am already so loaded with different drugs my cognitive reasoning is not the best.
Just prayers, please and good thoughts.
Just caught up with your journey. I hope you cross off September 5th with great satisfaction! You truly sound wonderful! I am continuing to pray for your healing and well-being.
Things have been stressful in my family lately. My 3 year old grandson was hospitalized for severe stenosis (tightened airway) brought on by viral croup. Two days later, his 10 year old brother was bitten on the side of his stomach by a friend’s dog. This was our Labor Day weekend.
I would go through anything rather than see one of my grand babies be hurting!!
I'm OK. Prayed for an angel on my shoulder and I think I have one.
DH was beyond grateful for what I did yesterday. He cannot do the proper emotions--a big problem for all our lives together. He's trying. I have to give him that.
Once I get the IV in and the OK from the doc that my blood can handle the chemo and I actually GET hooked up---then my anxiety drops to normal levels.
I have a calendar on the wall--more for DH than for me. He can't remember the days of chemo and so putting up a large calendar helps him to see when and where I need to be. I can't wait to come home today and cross off Sept. 5th. Then in 3 weeks, Sept 26th, THEN Oct. 17th--and 10 days after that, I get to go to VA to see my babies.
I'm really glad I didn't know what I was in for. I don't know if I could do this again. But people do, I know.
A petscan in a couple of weeks will show nothing, I hope.
Fingers crossed.....and thanks to all of you for your great kindness and support.
Sendhelp--your comment about my cognitive reasoning being good was a lift--I FEEL like a wordless dummy. :)
(((HUGs))) to you this morning.
Thursday will be a tiny dot on your memory a few years from now.
Let's drink to that.....3 oz. of orange juice!
BTW, your cognitive reasoning still looks good, very good.
I get what you’re saying, MidKid. Dealing with unexpected stuff for hubby is nothing compared to the larger picture.
I’m glad that you have a friend to help out. I understand about the prednisone deal. My MIL went through that when she was in treatment. You’re going through a lot.
You remind me so much of how my MIL handled everything. My FIL was the same as your husband, even being there he wasn’t much support. She ended up comforting him. He couldn’t even pass on medical information correctly so my MIL gave her oncologist permission to speak directly to us.
I am with you. You can’t be concerned about things that can’t be controlled. You are doing well focusing on what is truly important, your treatment. I hope you are able to rest afterwards.
It’s a long haul that feels like it lasts forever but when you are able to shout victory, please plan a celebration and allow us to share in your happiness. All of us will be smiling along with you. 😊
He was frantic and angry but not at me. At the people on the site who weren't ready for him, so he sat on his thumbs for a week----he HATES that.
His way of thinking is that no matter what someone else is going through, whatever HE is experiencing, it's worse. Typical of an ADD brain that can't think of multiple things. He will be grateful, and it's fine. He actually didn't HAVE all the meds in stock, I had to go to the pharmacy to get some of them.
He'll save this job and be a hero. And he will be very grateful to me, I'm sure. He did seem so edgy I asked him if he was taking his Antidepressant and he said he hadn't been taking it, he wasn't depressed! I said "well, I can't make you take it but you sometimes take meds for other people. If I didn't take my anti-anxiety meds I would have left you long ere this". He said he'd think about it, he has some with him, but his cardio doc did want him off of them 1 year post heart attack. I dunno. If he can be nice, I don't care what he takes/doesn't take.
I can't worry about his stuff and mine. There is literally NOTHING I can do to make his life 'better' when these kind of work issues arise.
Just prepping for tomorrow and the few days following when I will feel totally crappy. Clean house and do a few things I know I'll forget in the chemo fog.
CM--he DID solve his own problem: he called the one and only person who could get 8 different meds sorted and packaged and mailed. I'm not upset. Stuff happens he has no control over---and those kind of problems don't bug me.
I'm sorry, I know it's not the response you need, and I admire your pragmatic helpfulness *as long as you are up to the task and it helps your morale to do this*, but FFS.
I wouldn't even mind so much if there were any appreciation included, any acknowledgement that the humble life support stuff that you have always handled is actually not so simple, then, is it, QED.
I am glad he offered, and I agree it is a big deal. Meanwhile. It might be quite nice if he'd solve his own bloody problems, but I don't suppose that idea would cross his mind. Also, quite expensive perhaps?
Sick all day yesterday, really, just anxiety and some depression. DH is STUCK at a job site and cannot possibly leave it. So, I am totally on my own for another week. He hasn't called me for a week, nor texted beyond a text to say he can't call and is too busy and the job is running a full week behind schedule (this is typical). Tomorrow is a chemo infusion--a no-fun day which is long, boring and a little scary, even though I've done 3. One w/o him, so I know the drill.
He texted me this am that he needs his meds shipped out to him, ASAP and that I will do today. It's not his fault he's stuck 3000 miles away and I know this is completely the norm for him. He's frustrated and angry, but he has to be where he has to be. He did say that if I needed him he would drop it all and come home.
Just OFFERING means a ton to me, in the past it would have been anger and him telling me to suck it up. He likely will text my daughters who live in state, and that's fine.
Frankly, he isn't a ton of help when he is home and he'll be home next week after the prednisone rage is gone.
Just asking for good thoughts and prayers. My friend is taking me to the hospital but I'm not asking her to stay. Boring. Boring. Boring and she can't handle needles...she's the sweetest thing imaginable and I am grateful for friends who step up.
Thanks for your support. Prayers and more prayers. I have tried to be so tough. Always on the day prior to infusion I kind of fall apart for a while.
I'll be glad to be home tomorrow and snuggled down in my own bed with fresh sheets and clean jammies.
You’re stronger than you think you are. Still, you’re entitled to be anxious. You have a lot on your plate. Thinking and praying for you always.
I am not trying to put pressure on you. Everyone understands you have reasons to feel anxiety but you are a person that I feel we can all look up to when we are down in the dumps. You have climbed this mountain with a lot of grace. We admire that but if you need a day to blow off steam, go right ahead. You have earned it! God bless and take care.
Hugs!!
But if you don't like it, I would not want you to be suffering more.
An old fashioned coffee shop may know how to serve it with liver and onions,
would you eat that?
Looking forward to the treatments ending, and the time when you are completely healed. That will be a good day!
Ever since DH had his liver transplant, liver doesn't appeal to me at all!
I need to have better blood test results this time--higher iron and RBC. I have eaten more steaks in the past 3 weeks than I thought possible--and taken multivitamins with iron, so I should be OK.
I'm sweating through all the layers of my bedding each night--so I have taken to sleeping on top of and under a bath sheet. Then I can toss them aside as they get too damp and get fresh ones. It's all a delight. But after Thursday, I only have 6 weeks left. Then I am done and begin to heal.
What a rollercoaster.
DH will not make it home from his trip so I will be alone on Thursday. I am a little anxious, but honestly, DH makes the whole day more anxiety producing. He gets upset so easily, and while I wish he were the kind of hubby who'd hold my hand and be sweet, y'all know he's not. Instead of feeling 'bad' he won't be here, he's mad, which is how he does emotions.
Oh well--
Wish me luck. I am nervous already. And I know what to expect!
Stay strong. You can do this.
All my years of infertility treatments and the constant lab work, no one told me to be well hydrated for the needle sticks. They only said that I had ‘bad veins.’ I started feeling like a pin cushion.
I also had issues with IVs too. One time for my biopsy, mass in breast. They couldn’t get the IV in and they almost had to reschedule surgery. It is annoying. I do wish I had known that drinking lots of water helps.
Awhile back doing ordinary labs, the woman drawing my blood asked me why didn’t I drink lots of water and said that I was obviously dehydrated. I said to her that I would drink it then. She said it’s best to drink it awhile before lab work. Now I know and I do so much better with needles. I thanked her for telling me to be hydrated.
I hope you aren’t a pin cushion for the IV needle when you go. I will say an extra prayer. You have a wonderful outlook on all of this. That positive attitude is definitely going to help you on this difficult journey. Hugs!
Mid, your hubby is impressing me! That is fantastic. He made a comeback as far as I’m concerned. Redemption can happen!
He texted me and tried to call, but at the dr office I had phone on silent.
Then at the actual jobsite (a gov't facility) he is not allowed to have his phone, so he couldn't call. By the time he was able to get me, it had been over 72 hrs and he was starting to panic. When I said "I TOLD you I was seeing Dr. W, why are you freaking out?" He'd just forgotten, but he was upset 'cause I didn't answer the phone--but it wasn't coming through as HIM, it was random numbers and I didn't pick up. Not my fault.
I did tell him that he recently did a 10 day trip and didn't call or text ONCE...and he couldn't respond in any way that made THAT ok.
Kind of nice for him to show some concern and act on it.
He's trying mightily to get this job on track so he can leave and be here for my 4th infusion, although I am perfectly FINE going alone and having one of daughters come spend a few hours with me during infusion.
Maybe there's hope after all....I am still so sick most of the time it's hard to deal with anything 'emotional', so I keep things as chill as I can.
NHWM--yep. if you are dehydrated, those veins DO NOT want to be poked. Most blood tests you don't have to go in 'dry', you can drink water, at least.
Also, if the nurses can't get the IV going, ask for an anesthesiologist. Veins, when 'tormented' tend to collapse and make it almost impossible to accept an IV. Honestly, the worst part of my chemo is getting the IV started. I feel your pain!
Enjoyed your "list".
I am going to resubmit mine.
Do I expect it all to now fall simply into place and no more issues? Gosh, no, but at least he LISTENED, made an effort and I will continue to ASK and EXPECT a better outcome.
Funny (not) that I had assumed a list written so nicely and left on his pillow with other mail might have been read and internalized. It had not.
As far as the Austism possibility--without question he is 'on the spectrum'..so many people are...so what do I do? It seems to be fairly common in my family. No fun, but knowing a little about it helps.
I've always known he has ADD-since the 80's and we ALL just learned to live around it. 2/5 my kids have it, one fairly seriously and she does medicate for it.
I'm cautiously hopeful. We need to get through my chemo and re-birth of health..that's at least 6 months. He's now UNDERSTANDING why it is so important that he respect my need for order and cleanliness and such. Having a clean house when I'm sick makes everything 100xs worse.
I think he knew that I was ready to bolt.
It's been a 'joke' that we were going to have to work pretty hard to beat his parents' 42 year marriage which ended in divorce....I always would say "Ah, only 38 years? We got to go 5 more!" (His mom was not amused).
Well, off to dinner with his sis and her hubby. I am required to eat 3 steaks per week, and I am so not feeling it tonight, But I will eat that bloody rare ribeye---and enjoy it!
In a complete shock to my system (bag packed, place to go, all that) I waited until Saturday morning and he was in bed (of course) and I asked, very kindly and humbly and said "We really need to talk. Will you give me 15 minutes and then you can go back to your morning TV and FaceBook?"
I sat on the bed, apologized for inappropriately sending him a hot-wired email at work, but explained that I was feeling that I couldn't get his attention and I was sick (literally) and needed him to step up. And if he couldn't, well, we needed to work something out.
He actually said, in a VERY frustrated tone of voice "I HAVE NO IDEA WHAT YOU WANT ME TO DO!! I said "I typed out a 2 page, very descriptive LIST of daily, weekly, bi-weekly and monthly chores. Didn't you ever look at it???????????" No, he had not. He'd stuffed it in with the pile of mail he'll never open.
So I found the list, Most basic thing in the world. Like "take out the trash from all the trash cans daily. Toss recycling and don't stack in it a pile 12" from the recycling can! Make your bed. Put dirty clothes IN the hamper, not on top of and around the hamper. If you see a dusty surface, grab a dust cloth and wipe it down. A 6 yo could read and understand every single job.
I asked him how many times he'd scrubbed out the tub? Or cleaned around the toilet? Or wiped the whiskers from the counter? Or cleaned a window or mirror?
He said "I'm supposed to do that?" I said, "Bathroom cleanliness is mandatory. Post chemo I use the downstairs bath--so I can't give him any 'ickies' and I was cleaning the heck out of the upstairs one just in case. (He is a liver transplant recipient and immunosuppressed, so I am very aware of that).
Ladies and Gents---HE GOT IT! Only took 43 years (tomorrow is our anniversary)
Now this is unbelievable to me, but he said "I'm Ok with lists if you want other stuff done. I really do better if I have a list in hand." I gave him a small list and he actually fixed a gate that has 'dragged' for about 15 years....cleaned out his own car--for about the 2nd time in years....and GOT ON THE ELLIPTICAL RIDER, the first time ever. He watched a short news program and I could hear this odd sound, went downstairs and he is WORKING OUT. (For his back). I took a pic and posted it on the family Group me. Instant reactions from all 5 kids. Mostly of the WTH? kind but I was so much calmer and less stressed.
He REALLY wanted to take a drive in the mountains, but my nausea and our Utah mountain roads are not compatible. So When I took a 2 hr nap he took a drive. I went grocery shopping, we ate dinner and I crashed by 8. But the day, all in all, was a 180 from the usual Saturday.
He never apologized for not doing things to help--he doesn't DO apologies, but he made his own bed 2 days running and he has been so much NICER.
I am a little flummoxed by this...but knowing I can hand him a list and say "can you do these things?" and he KNOWS what I NEED. Maybe it's going to be OK.
I am fully aware of the personality changes I am experiencing and the emotional mood swings, etc. I have always tried to shield him from any 'emotions' I have, he has simply been unable to deal. I didn't do either of us any favors. He's not intuitive enough to try to figure me out. He's an engineer and if you know one, you know the basic problem solving personality type.
I am hopeful. Last night at a family party (his side) that we kind of crashed, I heard him talking to our niece and he was saying "B has been great. This is so hard on her and she is so sick most of the time but you wouldn't know it. I don't know how she keeps going'. Wow, I am glad I eavesdropped on that convo.
Could it possibly be as simple as making a LIST and being extremely straightforward with him that has been the answer all these years? Or maybe God figured I'd had enough. I'll never know.
I'm still only 50% done, but feeling better.
Just here thinking bout you, hoping you are okay, and wondering where you are and how things have turned out.
I wanted to reply immediately when you posted last about your DH. But, I really didn’t have anything constructive to offer.
I have been married to a half Clod half Good Guy for 39 years. And in all honesty I’m no Blue Ribbon winner myself. I am a handful.
My DH was Dxed in the 60s as “Hyperactive”. So as some of the others have mentioned my DH has got a lot of something going on.
So, the whole bit of your DH sleeping away his life I can not relate to at all. I wonder about that each time you post about that.
But, one of my biggest fears has been that I am the one with a serious illness and have to depend on my DH for support. Ummmm, I highly doubt that’s gonna happen. I’ve just decided if the DH support doesn’t happen I will have to “hire” to do what needs to be done so that I might heal.
Anyway, I hope you are doing okay wherever you are and letting yourself heal.
I can’t speak for the others here but I’m kinda worried since your last post.
Lizzy
He lost his hair, and his nails have never grown back properly either. But it worked. He’s back running and doing most things he did before. He’s also reduced his work time as money not as important as quality of life.
Ask if there are any support workers who can pop in and help if your CG prefers to sleep and leave you to own devices. Ah I see you have made other arrangements - hope that goes well - are they aware that your immune system is compromised? Last thing you need is someone with a simple cold that, for you, becomes pneumonia.
Its a tough road, but worth it in the end. You will be in my thoughts - stay strong and be kind to yourself during this time.
Hang in there!
You have valid concerns, and I agree with you.
You have described that your cognitive reasoning is challenged, and there is something called "steroid rage?".
Your stress level needs to drop drastically right away.
This is a time to fight, and get well, recover after treatment. Not necessarily engage your husband in a fight or ultimatum at this time. This is about you.
It needs to be.
It seems that it is not a time to be making major life decisions, imo. Your hubs was this way before you needed acute medical care, and I understand the challenges.
Keep venting.
A friend was counseled by her doctor, that before she seeks a divorce, please come and see him first to get her thyroid adjusted. They stayed married with only a few minor adjustments after she felt better. Many years ago.
Still, you do whatever you need to do to get well, decrease stress, even if going to your daughters for awhile. No major decisions need to be made, I am thinking.
Your daughter is on your side, and so am I, trying to be supportive to you.
I have been on the receiving end of "OK" answers f o r e v e r, and agree, it just does not cut it.
I am just your age married to my husband who is 69 for almost 40 years. Are there aspects to his character I wish were different,certainly. There are and have been times I have felt fed up but in the end we are real companions to each other. We both have very recently had a host of health issues. We have been there for each other. We have 3 grown children and presently 3 grandchildren. You are way ahead of me there and I admire you for the person,mother,grandmother and wife you are. Your posts about yourself and to others are inspiring and often filled with just the right amount of humor.
I realize you are going through a very difficult time. I can't imagine it for myself and your spunk with it is more than admirable. Yes your DH should behave differently and better. Perhaps with help he might learn to. You have so much family you share. I am speaking of the family you enjoy. Would it not be preferable to be there for them as a team? Do you want to continue these sunset years on your own?
Only you can feel what is best for you. I don't condone the behavior of your DH. I realize it is very hard to change people. I would just hope that perhaps with help he might make some changes to salvage the relationship. I wish you the best in the path ahead.
(I understand ur being 'fed up' with it, & wanting him to be there for you now).
Just think he's doing what he can, & may be terrified of losing you, but can't express it. Your mental state now is vital! Don't deal with this now friend.
Love 2u💟.
It's by a man whose wife was about to file for divorce. She's a speech language pathologist and it occured to her finally that perhaps he wasn't thoughtless and uncompassionate. Perhaps he was on the Autism Spectrum. She found an online questionnaire and they agreed to both fill out a copy. On his end, to quote him, there was "a whole lot of Autism going on".
I've met this guy at a conference, heard him give a keynote. There no way that you would identify him, just to meet him casually, as being ASD. But he is. Highly educated, a super great IT guy, loves his wife. But NO clue about what annoyed her. As an example, his first notation in his notebook (the "journal" he started keeping to remind himself what was making her crazy) was "don't change the radio station if she's singing along to a song". (!!!!!!!).
Maybe DH is a clod. He certainly doesn't deserve you. And in your shoes, the next time he gets sick, I'd let him figure out how to get the help he needed.
But do consider the AU angle and find out if he's interested in pursuing a behavior change in the interest of staying married.
At the end of my 24 year marriage to an awful person who mistreated me daily, the psychiatrist we visited in a last ditch effort to save things turned to me and asked if I was willing to change my behavior to suit what HE wanted. It was an eye opening question.
Mid, are YOU willing to change YOUR behavior and expectations of DH so that there is peace in your home? Think about that.
I agree that: wouldn't want Midkid58 to disrupt her family now, (cuz it wud also disrupt her ability to recover). That's most important for now.
P.S. there IS autism in my family, & I'm the most accommodating person...by necessity (to keep family).
I did 'crap out' after 24 yrs of marriage tho, so I understand why Midkid58 has had enough. Still, now is not the time to add more stress. 💟
Remember that!
Read psalms 911 as I call it
Psalms 91:1