Just need some support, I'm kind of freaking out a little.
This post is about ME, all about ME. I cannot talk to family yet, and have no desire to dump this on my kiddoes when it was commented on Sunday that we are really drama free right now! And it feels so good!
OK--
I have had this lump on the side of my neck for, gosh, weeks, since I first noticed it. Kind thought it was weird, but assumed a pulled and swollen muscle as I do a lot of heavy lifting in my gardening---
Lump doesn't go away, and now I am feeling that it's really tender and sore. A big hug from a g-daughter on Saturday had me reeling in pain. Sunday it was very noticeable--and more painful.
Just got back from my PCP who SAW it and said "Holy Cow, nobody but you has noticed this? It's huge!" He palpated my neck, both sides, and said there isn't ONE, there's at least 3 lumps. The big one is the size of a lime, the other one, the size of a ping pong ball and the little on the size of a BIG marble. He had me feel them and then I could feel that there are 3 of them.
This doc is calm beyond belief, but he had me scheduled for a CT scan for Thurs am or sooner if my ins oks it. Blood tests for infection and he did put me on an antibiotic and said he'd be calling me daily.
Ok--like I said, this guy is SUPER calm. He wasn't today. He actually looked really concerned and that scared me. I said "What's your first take on this?" He paused and said, "You're not stupid and you have kids who are doctors and if I don't give it to you straight you'll be calling them. It looks like cancer. I hope I'm wrong. Let's wait for the CT scan and move from there. It's NOT nothing, so we need to be aggressive. These lymph nodes are ginormous."
So---wow. I realize he wouldn't tell a 'regular' patient this right off the bat, and of course I hope he's wrong--but there are some other symptoms, which I won't go into which is why he said he thought first off, the big C.
I don't wanna have cancer.
I'm not saying anything to anyone b/c if he's wrong, I'll upset the fam for nothing. But I feel like I could come here and spill my guts and ask for prayers and I'll feel them.
So--if you are a praying person, please offer one up for me that I can be strong for whatever this is. If you're a 'good thoughts out in the world' send some for me.
I'll be honest. I'm slightly terrified.
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Whatever you are experiencing now remember you are right when you said:
“I know there is a reason why I have to go through this, and I hope to do so with humor, dignity and w/o fear.”
The only thing I would say is don’t be so against having fear, fear can propel us! depends how we channel it. And ALWAYS laugh! No matter what, laugh! Even if at yourself : )
Take a deep breath and recharge through it; let calmness and peace fill you. Whatever you feel that you cannot handle, place it in His hands. He will do what is best.
With much love, care and light!!
Sending positive thoughts.
prayers being sent your way ❤️
I seriously have been getting up in the am and hitting the AC board first. I truly think y'all will be my best source of venting, crying, laughing, etc. I feel closer to a lot of you than I do to my family. That's good b/c I know I will be angry and sad and, well, all the feels and I will need a safe place to come and vent.
I feel those prayers, I really do. And the advice and the comfort.
I know there is a reason why I have to go through this, and I hope to do so with humor, dignity and w/o fear.
Going to spend the week cleaning & organizing, buying a wig and some scarves and getting all the 'stuff' ready. Also a long list of movies I can curl up with on my laptop. I am not a TV watcher---but last night, I was looking up some old actress and ended up watching Bob Fosse's 'All That Jazz'. 2 hours gone in a breath's moment.
I got out of the habit of even having the TV on and it's not just that the shows are insipid--it's the commercials! So I will watch movies and do some baby blankets and well--we don't know what.
I may start a new thread for the chemo weeks. When my DH pointed out to me that I was sick as a dog and bedridden for 16 weeks with one of my pregnancies, it put things in perspective.
I'm not ready to start today---but I will be as ready in 9 days as I can be.
Hugs to everyone today.
It's good to hear you have a network of family and church friends who will help you should the going get tough, now you be sure to let them!I know you are strong, but do allow folks to help out, even if it's only the little things, you have done your fair share of helping others over the years!
I will be praying for you! You've got this! HUGS!
When it's so important to avoid stress, competence has got to be the key thing.
It's not worth getting upset at DH if he can't do things the way you want him to.
For some reason, when I am really sick I want things cleaner, more organized, etc., than I really care about on the reg.
Also 3 granddaughters who can learn to give service. Not a worry.
I agree that DH should know it's his turn, and it sounds as if he does know it, but what if with the best will in the world he's just no good at it? I'd rather you had a failsafe option as back up. Can the oncology office tell you about support services?
DH got quite the shock yesterday. I guess it was the Doc scheduling the treatment and showing DH how much the remaining nodes have grown in 2 weeks. Suddenly, it was real.
I'm a pretty easy peasy patient. I do NOT like to be fussed and I am capable of caring for myself. It's the 'day to day' that's hard for DH. I have very low expectations---but I think this whole thing, for him, has been overwhelming.
I do have a SW who is working with us. I think she may have slipped a little info to my oncologist, as he made quite the point about what I can and CANNOT do. Looking at Dh the whole time. Didn't help that Dh came in there with a man-cold and had to wear a mask and kept coughing and sneezing.
It's only 17 weeks, thereabouts. Then the rebound--healing phase. I guess I picked a good time to have cancer. We will have good weather and we're going to plan a trip for January with all the families.
All in all--I am very blessed. I know that things come into our lives to challenge us and teach us. I honestly think this is for DH to learn how to live life with putting people in first place and to hopefully--get over his sick addiction to political fighting with people on FB. There's been no peace in our house in years---DH's brother and he are actually not speaking at all--and haven't for 2 years over political differences. It's unbelievable.
Maybe looking at seriously, possibly life threatening illness will help them to look at things like the smart men they are.
Not dying of cancer.
Then, praying for complete remission.
I have never really ever thought "this is going to kill me". it's more been "dang it, I don't WANNA have cancer!"
I fully expect to completely beat this and have 20 more years. I'd be 83. That's old enough.
I know that attitude is almost as important as the actual meds. I'm slowly cleaning out my FB 'friends' list--and making a list in my care note book of people I KNOW have my back.
It's going to be fine.
DH finally, and really "gets it" that I have cancer. They can 'pretty it up' with other terms all they want-but it's cancer.
so---the good and bad news of any TX plan. I do have a little heart murmur, which should not be a problem, but will need to be watched closely during chemo. One more kinda anxiety producing thing.
I'll be doing 6 rounds of R-CHOP chemo. 1 day in the 'infusion' room. 4 days to follow on whopping doses of prednisone. Then 2 weeks of 'rest' (which is actually when you get sick!)
Lather, rinse, repeat 5 more times.
Dr wants me to start TX yesterday--but told me a couple weeks wouldn't matter, but not to drag this out.
I come home and get a message that they have scheduled me to start on Monday.
Office had closed for the day--so Ieft a message, I'd like to wait one week, just to get some stuff organized here and to wrap my brain around this. However, if it's to be Monday, then it shall be Monday.
The dr is wonderful and spent a LONG time talking to me, thanks to Dr Joe, I already knew a lot.
I SO wanted to fly out to VA and see those babies for a few days--but he nixed that. Travel at this time is not a good plan.
I will admit I held it together until we walked out. Then I 'lost it'. As much as I am capable of 'losing it' in public.
For the first time in all our lives, DH acted like a caring husband. He said "I will take care of you, I promise" I said "I do not want you to take time off from work and sleep all day long and call that 'caring for me'. If you cannot be 110% there for me, you need to find another place to live during this. Dr. was adamant that I live as stress free life as possible during this. And he was not joking around.
I cannot have radiation b/c of where the tumors are in my neck and really, he felt, the SOP was going to be good for me.
Feeling terrified. Missing my babies. Wishing I could see my son one time before this awful rollercoaster starts.
It's not nearly as bad as what many go through. I'm just having a little pity party.
Welp--at least there's progress. The 'hurry up and wait' is now just 'hurry up'. Oh, and evidently one of the main s/e is sleepiness. DH is going to find out how that shoe fits, although I am SURE my girls will step up. I have a dear friend who wants to be very involved in all this and I am pulling back a little. DH HAS to learn how to care give. If he stands there and looks lost and pathetic--well, it's the not the best way to deal with this, we don't have kids at home, and he can do what I have done so many times for him.
Wish me luck. It'll be on the 24th or the 1st.
"Be Like a Duck. Remain Calm on the Surface and Paddle Like Hell Underneath."
-Michael Caine
You have a good plan and a calm, intelligent way to handle it. Thank you.
Last night I did make a good dinner (Most nights I do) and he was happy--since if he has to cook, he makes eggs and bacon...that's about all he can cook, poor guy. He plowed through the entire casserole, which was nothing special, but HE hadn't had to cook anything!
I have done a lot of thinking. I do think I have been hard on him. I can't keep on doing 'all the things' anymore,. whether I had cancer or not. I'm just aging and have pretty severe arthritis in my hands, back and feet, so a lot of things I used to do are simply not possible. Learning to step up and step in is something he has to be willing to either do himself or let me job out. Period. No arguing, because I just find that exhausting.
I like the idea of breaking down jobs into smaller ones--it is as if I was teaching one of the kids how to do things. I was raised with the "no job is a man's job and no job is a woman's job--it's just a job and it needs doing, so do it and stop fussing". Can you tell my daddy was a drill sergeant?
My SIL's are all amazing at fathering, working, cooking, you name it. My daughters are all married to "millienial men" who can do all the things--and DO them. I'm married to a dinosaur--and that has it's plusses, for sure. He has NEVER expected me to get a job and make X amount of money plus do all the house stuff/run a family stuff. We're kind of a dying generation. I was lucky to be able to be a SAHM which is what I wanted--so I raised the whole dang neighborhood! The FB posts from kids I was watching over all their lives have been amazing---I need to learn to lean into that love--the love from all sources and allow people to nurture me. That's hard for me!
Right now, not knowing what kind of tx I will be receiving, how it will affect me, etc., well it's like waiting for a baby to be born. There's just so much you cannot do to prepare---and the waiting is crazy stressful.
Once I see the oncologist and he gives me the plan of attack--I will either A: get my sweet daughters here for a day or two and "Kondo" my whole house and put a lot of stuff in storage. (we were planning to move in about 18 months, so what's a few extra months at this end of it all)...and clean like crazy women. If we have time, we can do that and having a lot less 'stuff' around will make it much easier for DH to keep the house picked up. Also, I like a 'spare' looking home and he doesn't care so this should be a good plan--'should be'.
B: make a very simple list of what "clean the kitchen' entails. I'll make a paper copy and also ALEXA is very good at nagging, in her sweet voice. She already has a "Going to work today B?" list that gives hi a quick run down of the things he needs to grab on the way out the door. It's NOT MY VOICE, so he doesn't register it a such. Getting him to use it will be a challenge, but what the heck? If he lets the bathroom get gross, he'll have one person to blame.
The last thing I want is for there to be tension between us and for me to be actively sick and him ignoring me b/c he...can't deal.
It's a thought---maybe some would say I am catering to him, and maybe I am, but honestly, after 43 years with him, neither of us will change much for the better.
We've hit a sharp learning curve here. I HAVE to lower my expectations---a ton. And create my support group from within the family and friends I can trust.
Everyone here is so wonderful--guiding me along slowly and patiently. I hope to be able to give back!
Dealing with DH in all his illnesses and accidents--I know the natural path of things is to suddenly BE THERE with candy and flowers and the inevitable drama--then it dissipates over time and you are left with the true friends. Not angry, it is what it is.
DH took the weekend off--and when he does, he simply sleeps all day. So Sat & Sun when there were a lot of things he could have done...he slept. I was very sick all day Sat and he told me that was impossible, I wasn't far enough along in the illness to FEEL sick. It was a horrible migraine, which I am not allowed to medicate for.
I realize he's doing the best he can--sadly, the best he can do is not very good.
Last night we ran to my daughter's for a granddaughter's b-day. (Actually, g-daughter was a real stinker and wouldn't come out of her room...I should have taken the card, money and come home).
Eventually she showed up and was miffed b/c the OTHER cousins weren't coming. (Stomach virus--she should be GRATEFUL).
On the ride home I asked DH if he would be angry/offended if I made him a list of things that need to be done on a daily & weekly basis. I said 'Like laundry' and he blew up "I DID do the laundry". I said "You carried the hamper downstairs. You moved the towels to the dryer as the are very heavy. Sorry, but that's NOT doing the laundry." I washed, dried, folded and ironed. I wasn't mad, I was frustrated. I have an echocardiogram this am and a bunch of blood tests, he wanted to take me, but want/need him to go away.
I am also going to set up a time to visit with the SW and see if she has any great plans on how to deal with him. I DO NOT want to fight, but by darn, I am sick and I am going to BE sick for a while and I NEED him to help.
Oh well---this week is pretty quiet. Echocardiogram today and bunch of blood tests, then Thursday the visit with the oncologist. DH has to go to Denver, wants me to change my appt. No sir, I am not. I will put me first for a while and he can be angry.
Shoot it's only Monday and I am already in a pi$$y mood. I am so glad he went to work. Having him stay home is awful.
I will make that list and that alone will keep him going to work. I said 'you just don't think you can do all the things I do, do you?' and he admitted, no, no way can he work as hard as I do---but on the other hand, I don't earn any money. I told him he could NOT afford me. :)
Oh well--hopefully this week we will have a plan of attack.
I have been out of aging care for a while but I assure you you have been present in my prayers. : )
So in all honesty your hubby’s way to “help” is not surprising, men seem to really be from Mars some times, don’t they? Lol and they lose their abilities even more when worried and stressed out. So my suggestion to you (I know you were not asking for one, but I’ll share it anyway) is to re assess priorities. The number one priority now I would say is your health and mainly your peace of mind, therefore avoid situations that you know will take away your peace. For example if you know that expecting and asking your hubby to do laundry will only lead to disappointment, arguments and you being upset...it is so not worth it! That doesn’t mean that you won’t do laundry in your household, but it means that you could for instance break down tasks, I.e. don’t ask him to “do laundry”, that’s too broad, ask him to bring the clothes down, then if feeling ok you can put them in the washer and dryer (the easier parts) and then ask him specifically to fold them or to help bringing them to the corresponding room.
Now, if you’re not feeling well, simply don’t do it. Period. He will not do the “whole” task, and he will complain, so you know you have to participate somehow, hence if you’re not feeling well, just don’t even start.
Certain things don’t get done? That is ok! Relax your expectations, relax yourself. Pick your battles so you can win the war! Remember it is an important war, you cannot afford to waste energy and specially to bring negativity into your life when what you need the most is good energy and light! Keep your center in balance.
And take advantage of what you described so well, that now everybody is offering their help. Take the offers before they go away! Maybe it doesn’t need to be your husband doing the laundry, but a friend. And maybe one of your kids can help taking care of you husband, getting him out of the house. ASK for help to people that you know will help.
Remember, once again, your health is the priority. Your peace of mind is the priority. Place yourself in a situation where you can receive healing, receive good energy and feel at peace even in the middle of the storm. Don’t let minutiae take away your peace : )
Will continue praying, healing prayers! and trusting that all will go as God has it planned for and in your life. Nothing can go wrong when we have Him by our side!
A hug and hoping all goes well with all and every step ahead.
From a fellow possible Aspie's wife too. My DH has about as much compassion as a robot when I'm sick. Daughter makes a fleeting sad face. My son (who actually has a autistic high functuoning label) shows more empathy / sympathy than either!
Treat yourself to whatever makes you feel better.
Glad that you have family support. DH is probably still in shock and scared! You know how men can be!!😱
Hugs😛
It's the NOT KNOWING that makes me nuts.
Dh did finally get up yesterday about 1 and went in to work for a while. I feel so sorry for him , really, just not being able to deal with all this.
I slept late and came up and he had gotten all ready for work and had gone back to bed. I said "Oh, no sir, no, no, no. Get up and GO!". Once he gets a Diet Coke in him and gets to work, he'll be fine. He asked if he shouldn't maybe stay home with me and I let him know that he is kind to offer, but as he doesn't DO anything to help, he should just go to work and keep piling up the OT.
He did haul the laundry hamper downstairs for me. And left his dry cleaning out for me to run in for him. SMH. I am not supposed to bend over with any weight in my arms until next Monday, but I think I will do laundry. It's not bad and he doesn't know how to run the W/D.
Last night as I was making dinner, my mother called. SO WEIRD. I answered and she starts in "I have been just worried out of my MIND about you! Do you know I have called every hospital in the valley?' No, I didn't know and didn't care.
I asked her why she didn't just ask any one of the 4 adult children who still live at home with brother and his wife and her (I SAW his wife at her work on Sat) how I am? I also said, "Why didn't you call one of the sibs, or one of my kids. Why in heaven's name would you just start calling HOSPITALS????????????"
This is just mother being her narcissistic self--'hey, everybody, look at me! Poor me, my little daughter is just riddled with cancer and I can't even find her!".
Her little drama actually made me laugh pretty hard. I told her I was FINE and that she has my phone number and simply to call it if she has questions. Same number for over 40 years. This makes, maybe the 8th time she's called me in 43 years. Same cell phone number for the last 15.
She actually seemed let down that I am no sicker. Sorry, mom.
My DH and I play a sick game called "who's mom is crazier?" Usually it's his, but I think this little completely ridiculous call wins mom the crazy statue for a while. DH's mother has not reached out in any way, and will not. Just as well.
Being able to see some humor (gallows humor, I guess) in all this has helped. I am swollen like a puffer fish as the surgery did leave me looking beaten up---but hey, each day is a new day and I should not require being stuck anywhere for a few days.
Thank you all for the prayers!! I know they are being heard and answered and I am beyond grateful for them. Y'all are wonderful!!!!