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.
Many calls from friends and my kids. Dh has forgotten and is going to feel really stupid when he walks in the door from work in an hour.
Learning slowly what I can and can't do---it's a new norm, for sure.
Grateful today for good friends and family who care. Thankful for all of you!!
I will be praying for you and may the God or your higher power be with the talented doctors.
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.
Let that big heart of yours receive as swiftly as it gives. 🧡
Love and support from cyberspace!
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.
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!}}
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".
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!
ONE TREATMENT OVER, keep up the good work. We’re all standing here applauding for you!!!!
In the words of a furry sage... :)
”... remember: you're braver than you believe, and stronger than you seem, and smarter than you think.”
I know you don’t feel very strong right now, and terrified is probably an understatement. Physical pain and the anguish of fear is a crappy combination. But, you can DO this. You can. I hope you have a couple of close friends nearby to sit with you, joke with you, and cry with you. If not, know that SO many people are pulling for you. And remember that hope wants to come to the surface; it just needs a chance to float up.
Prayers, strength & comfort sent your way.
Midkid, if you have to barf, barf. On your husband's leather seats or whereever.
I wish you all the best.
Rest and heal this evening if you can.
When my step mil had cancer she cut her hair quite short right after her hair started to fall out. It was less distressing than finding clumps of shoulder length hair on her pillow. When she got a different cancer 10 years later, she took the clippers to her head right away.
She had a wonderful time playing with wigs, one day she was blond, another a red head.
She was at stage 4 Non Hodgkin’s lymphoma and today is a well, happy granny.
Wishing you well on Canada Day.
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