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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.

Well--

Shoot, I came in to update y'all right after I got home from chemo and couldn't find the link (sometimes these little boogers just hide) and I didn't feel like searching...

Things could NOT have gone better. (Well, this could all be free, but that's dream) The infusion center was lovely, actually, my cancer clinic sits on a high hill in SLC and you can see the entire valley for miles and miles. (Think of the 2002 Olympics and the mountains circling the valley--Huntsman is on the east side of the valley)

The IV went right in--the infusion nurse was absolutely amazing.....what was 'planned' to take up to 9 hrs was done and we were out in the door in 5. Yes, the were side effects but they were on top of everything and so, nothing more than nausea and it was quickly handled.

Every drug was talked about, all the effects I might feel, etc before they were administered. It was so creepy to watch those IV bags running what amounts to poison into your body.

Anyhow--Dh stayed there, he was going to go to work, but ended up working from the chair next to me--and by the time he felt he could leave me, it was over.

I had not been 'prepped' mentally, hadn't had a pre-TX tour of the infusion center nor any pre-chemo education, which I think would have been nice, and they were profoundly sorry about that--but since I had talked this therapy out with Dr Joe, I felt pretty OK about it.

Not much appetite and I have to take a huge dose of Prednisone every morning for the rest of the first week--then I have 2 weeks off. I'm a little wired.

It was really OK.

wow, I sure felt the support and prayers. I was trying to visualize all the prayers and good thoughts wafting to heaven...really, having so much love and support is wonderful.

So--really, if all the infusions are as 'easy' as this one (And I am not naïve enough to think that this will always be pretty easy)...I think I can do this.

DH is trying--this is SO out of his wheelhouse. we came home Monday and his norm when he is home is to sleep--all day, whatever. I guess some of the guys in the neighborhood had offered to mow own lawn and fix some stuff and he was deeply offended and asked why they'd DO that--well, my answer was that he hadn't ever done that and they were thinking of me. He requires some prompting, and that's OK. It's a whole new thing for him. He stepped up and spent the rest of the day working on broken sprinklers (I would normally be doing that) He watered the gardens and actually pulled a few weeds--remembered to take out the trash (with a little sticky not reminder)...baby steps.

Not too worried about the hair. As I have gone through this I realize I have had a lot of symptoms prior to actually being dxed. My eyelashes have all but fallen out, I am bloated as much as a 6 months pregnant woman--all signs that I either ignored or just didn't 'get'. My hair already is pretty short and I will mourn losing it, I'm sure, but it gets into the 100's here in the summer and well, I can go au naturel or wear a hat or something. Dr Joe wanted me to try the cooling cap but it wasn't even really talked about nor offered. I think that if you're going to lose your hair (and that's one thing that they are SURE will happen) I may as well roll with it.

By Christmas--and it will roll around fast...I should have hair as long as I have now. Truly, if losing your hair is the worst thing you can think of with cancer, you need to get a reality tune up. I am going to beat this and then live as long a life as God gives me.

I know there are things that both DH and I need to learn from this. We have been married forever-and he is hopefully going to learn how to be nicer and I am going to learn to not expect him to be something he cannot be.

Our son and family drove down from Washington yesterday to hang out with the family. I know my son is worried and it will be good to see him.

SO MANY THANKS~!~You are all my cyber angels!
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AnnReid Jul 4, 2019
Your post HAS MADE MY DAY, SugarCookie!!!!

ONE TREATMENT OVER, keep up the good work. We’re all standing here applauding for you!!!!
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I used to say if men had periods they'd demand four days off every month and would probably get it too. And don't even get me started on menopause. They'd have go- fund me pages for that.
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Prayers, good thoughts and lost of (((((hugs)))))) going out to you, dear lady!

We have your back!

I stand by my recommendation to hire a housekeeper, at least 1X per week, until this is over. Ask one of your kids to set that up.

Again, ((((((hugs))))))).
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Midkid58 Jul 3, 2019
OD is sending her cleaning lady out for me--what a gem (both of them!)
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Day 4, essentially and I am feeling fairly hopeful---I've had some nausea, a little puking which I hate, but not the kind that leaves you 'hugging' the porcelain throne...my hatred of throwing up heartens back to those many months of morning sickness--5 kids @ 4 months per. Ick.

Only one more day with the prednisone. It truly is the one bugaboo in this. I am really, really wired, and then when I crash, I CRASH. This is one thing that will get worse, so it's good I can see what I can and cannot do. I have been waking up at 4 am to take it--so I can doze for a few hours and then I'm not anxiety ridden for hours and hours. The half life is not that long, and I know that it will start to taper on it's own in 8 hrs or so.

And the all important talent of being able to say 'no, I'm sorry I can't do that'.

Taking care of me has never been a priority and I can see that right now. DH is doing the best he can to make me feel good--and I'm not abusing him by throwing him in the deep end of the pool. He is getting tired and I know that Sundays will be a complete day off for him. I'm not 'allowed' to do the yard work, which he doesn't love, but he can do a lot and I can putter.

Well-son and family are in town. The g-kids were all so sweet. The youngest (5) asked me if I was very sick...and I told him, yes, I was very sick but I was going to be fine. I think the family came into town basically so my son could lay eyes on me and give me a hug and golf with his dad. And that's fine.


Thank you all so, so, so much. I do know this will be harder than it is right now--hair loss, some other s/e that can't be 'fixed' but so far..so good.

And for now, that's fine with me.

Happy 4th of July. Let's celebrate our independence by blowing up a bunch of stuff. (I'm sure our forefathers are befuddled by that tradition).

{{Hugs to all of you!}}
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Sendhelp Jul 5, 2019
Midkid,
Our forefathers might have understood the tradition of blowing things up!
"And the rocket's red glare, the bombs bursting in air,
Gave proof through the night that our flag was still there".
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Had a crummy day yesterday--but honestly? It was not that bad.

My son and his family had driven from WA to spend the 4th with us. I did as much and no more than I felt I could do. Yesterday I had not gotten an hour of sleep (prednisone!!) in almost 30 hours and all the drugs they give you during chemo and afterwards are massively constipating--so, well, no need for the gruesome details.

DH went to golf and play with the family in Park City (yep, Sundance is held there in the winters) it's only about 1/2 hr away. He went JOYOUSLY and I was glad to see him go. I needed to be 'sick' on my own.

So he got 12 hours of playing with the kids and I got to sort out my intestines. A lovely day was had by all.

There's a learning curve here, and I wasn't educated well enough for some of the side effects, but spent the day reading, researching and today, after a pretty good night of sleep--I am better.

I really only saw my son for about an hour, he is a hyper-driven Type A person, but that's OK. Invited myself and DH to Thanksgiving at their place this year (we do alternate years, but somehow I always end up cooking!)--so that is something to look forward to. I should be feeling a lot better 7 weeks post final infusion. My DIL and I got along swimmingly, and that's not always the case. So glad we're on good terms.

Trying to set my bar pretty low for DH's help. He's been great, actually, fixed my car, which should have taken an hour and took 8. I cleaned house a little, did his laundry so he can travel this week...rested when I needed to and APPRECIATED that the prednisone is slowly leaving my system. I'll know better next infusion to prep for the s/e. And to take the pred at about 3 am so I can sleep through part of the 'rage period'.

Heading out to do a couple small errands and I am going to color my hair---it will fall out in a month or so, and looks awful---might as well do it once more :)

So---now I have about 2 weeks to rest and recoup before we do this all over.
I'm no naïve enough to think I will always be able to handle all the moods and stuff, but I am heartened each day that is 'good'.

And for all of you. I do feel the prayers and the kindness. I hate FB but I really love coming here.

It's my birthday in a couple of days--sure not what I had planned, but, well, what you gonna do? Hope I feel like eating out, if not, won't be the end of the world. Last year's birthday had DH coming home from his 2nd massive heart attack. About anything will be a step up from that.
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Midkid, please know that I am thinking of you on this, your first day of Chemo and praying that it goes smoothly for you! You have been so strong and so brave during this diagnosis phase, and I know that we have all appreciated your sharing your journey with us. We Love you for your honesty and we all learn from one another.

Regarding losing your hair, well as one who has always had thick long hair, and has always admired women who take the challenge of cutting their hair Really short and cute, I reccomend you take that on and enjoy it, especially now that it is summertime. Of course you know that it will grow back in, hopefully "white and curly", but for now, one less thing to worry about, lol! Get a few bandanas, just like in the old days, and as it grows back in, gel it up and have fun with it!

I know you will beat this! You are stronger than you think! Take things as they come, and concentrate on you and feeling better.

I'll be thinking of you as the weeks progress, and praying for ease in your fight against this Unwanted Intruder, You Got This! HUGS! Stacey B
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Midkid you are strong willed and will be on the other side of this battle in no time.

Prayers, strength & comfort sent your way.
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Well ,Dh came home and my hair was like 80% gone, He tried not to be shocked, but he was. He came home and was in bed and asleep within 1/ 2 hour. My scalp was on fire, and I was miserable, so I read for hours and hours and finally fell asleep about 5 am. I got in the shower at 8 and literally washed all my hair off. I have a little fringe of bangs, so it looks bad, but, well, it's what it is. He saw me like that and was still pushing me to get going and get ready to go hiking. I can barely do 15 minutes on the elliptical rider. So I just said "This is YOUR friend from20+ years ago. I met his wife ONCE. It is sweet of you to want me to go, but it's 105 degrees today, I didn't sleep and I would cut your day short. I'm not going and they should respect that. Did you even tell them I have cancer?" Uh, no he just said I hadn't been feeling well.

When he finally connected with the friend I heard him say "Buffy has cancer, I wasn't upfront with you." I could hear his friend saying "Oh my gosh! And she feels like hiking?" He did start the laundry and didn't argue with me about paying a neighbor kid to mow the lawn.

He finally left about 2 and I will be in bed before he's home. Oh, and he has to go right back to the jobsite he just left! Why in the world did he come home for 36 hrs? He needed his laundry done, I guess. If he had stayed he could have gone to my 2nd infusion on Thursday. Now I have to get a daughter to come fetch me. No big deal. It's a BREAK for them!. Hopefully it won't be worse than last time and I didn't need him at all. I cannot figure this guy out. I had a couple tears about the hair (what woman wouldn't ?) and he said "You have GOT to get over this".

SMH.

I am actually glad he won't be back home until after the prednisone rage. It wasn't too awful last time, but I will be better if I do not have to deal with him.

I don't want this to be a rant about my half hearted DH's help. He truly is doing the best he can. He was just raised to be fussed and coddled and I have continued that for 43 years. We're doing a 180 in our marriage dynamic and it's hard. I am going to get the SW this week and find us a marriage counselor to help out.

SUPER fatigued. Read about all the s/e....such weird ones. Burning scalp, bleeding gums, swollen gums, loose teeth--sheesh...nobody would sign up for this if they knew all the possibilities

I DID take a 'babychick hair' pic for our family group me and the kids were all so sweet. Then I added a couple with the wig and that made us all feel better.

Sure am grateful for central AC. Wow, is it miserable today!
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Countrymouse 3 hours ago
Hugs and hugs. You are a wonder woman.

I agree it's not fair to blame DH for how he is, no. But neither do you have to carry him, not for the time being. Be how you need to be and let him cope as best he can.

Love you xxx
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Mid,
SO sorry I haven’t wished you well yet but I’ve been off site due to moving (again).
You will be in my prayers for a fast and easy recovery.

Are you aware that people who are prayed for, whether they know it or not, recover faster and with less problems than people who are not prayed for? Yup, it’s an actual double blind scientific study. Given that, I’d say, with all those on here who love and care for you as they do, you’ll be in perfect health in no time! 😊

Isn't Prednisone the worst drug in the world? Horrible side effects but it really does the job. Thankfully, this too, shall pass. Great you’ve found a way to get around the major problems with it.

Try to take each day as a new experience. It’s hard to not think of your experiences collectively, but every day holds something new.

And just think, you won’t have anymore “bad hair days”. 🤔
You could try a turban 👳🏻‍♀️. And I’ve seen baseball caps with fake hair hanging on the bottom too.

We’re all pulling for you. Remember the caring vibes when you’re at your lowest point. When you think you can’t take it anymore, reach out to God. The 23 rd psalm is my favorite. I love the imagery.

Remember, what you send out into the universe is what you receive back. Make it positive.

God bless you in your difficult struggle.
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Had a rough day yesterday--well, not really, I slept through it! A friend came to visit and I was so enjoying her--but 3 hrs in, I crashed, visibly, in front of her. She is close enough to have noticed and said "I'm leaving and you're going to bed!" Which I did, at 4 pm. Got up at 6, took a pain pill and went back to bed. At about 10 pm I woke b/c I smelled ROSES...and DH had brought home a gorgeous bouquet. Guilt did eat at him, I am sure. They're lovely!

I texted him at about 3 am and he apologized and all is well for now. I have these huge sores in my mouth and only ice chips and a Tylenol 3 every 4 hours is keeping me OK. One more s/e to add to the bunch.

On a funny note: mother doesn't usually remember my b-day, but about 8 pm on my birthday, I get a delivery of 'Incredible Edibles' one of those fruit bouquets. Not to be rude, but it looked like the poor thing had been bouncing around the delivery truck all day. It was not cold, not even close and it was mostly fallen apart, Mother had sent it, and she called to see if her 'thoughtful and expensive gift' had made it'. (At that point, it hadn't come, so I had no idea what she was talking about). I couldn't eat any of that bruised fruit---but my grands were here and I let them have at it.

I didn't want mother to feel bad, but I kind of feel like the store needs to know what shape the thing was in. Don't know how I can do that w/o mom getting upset and I don't want her to be so. It must have taken her corralling one of the family members she lives with to order it, she can't use the phone w/o help.

I did take a pic of it and maybe I'll call the store that sent it, b/c if mine was 6 hrs late and pretty much unedible--others were also. (A real first world problem...but they are expensive).

Mom is sure I am dying and so she is doing these weird things....my daughter looked at this fruit thing and said "Mother, do NOT eat this. It look so sketchy". I didn't, not a single piece.

So--a weird and different day. I guess each day will be it's own 'norm'. I don't know. I'm making dinner early today and leaving DH a note so he can microwave it if I do the 'crash and burn' in the early afternoon. Finding the equilibrium that is my life right now is a real challenge.

AS always--thank you for the positive karma that all of you send to the universe each day, even on the worst days, I feel the love.
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BarbBrooklyn Jul 11, 2019
Mid!!!!! Big (((hugs)))) to you and thank you for keeping your amazing sense of humor!

Glad you didn't eat any of the fruit; funny story--a bunch of years back, DH was discovered, completely by accident to have an aortic aneurysm, the kind that kills you in an instant. Had a crick in his neck, PCP sent him to see a cardio guy "just in case" and we got him to the hospital in time for surgery.

His ex sent one of those lovely Harry and David fruit things, all Pear stuff, because he loves pears. two of the pears were mushy. I sent them an email and they sent an entire replacement. I don't believe that the original sender ever knew anything about it; this is between the merchant and the recipient. So email away! Feel better, honey.
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