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.
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!!!!
When I crash, I crash HARD and have to sleep, and I'd felt good yesterday so planned to go craft shopping today for some crafts for the g-kids. I couldn't sleep last night and wound up sleeping until 11. And I can't get anything done.
Whatever--I have a cancer notebook and I've been writing down the s/e as they happen and then noting if the happen again and when. It's not so I'll feel worse, it's so I'll look at it and go "Oh, yeah, I had that at day 5 last time".
Dh looked over my shoulder at the list and said "Holy cow--you have had ALL THESE side effects? How do you get out pf bed in the morning?!" I said, "I only have nausea, a headache and bloating on all the days. The rest are like, one day or two and then they go, or something worse hits."
Still and all---it has not been too bad. I do miss the 'friends' who are staying away in droves. Everyone KNOWS I am up for visits, I have a sign I put on the front door if I lie down asking politely for whomever to leave a note and come back later----it's working, they're not ringing the bell and they sure aren't coming back. I am a little lonely, but it has been good for introspection and healing.
I'm looking for a cancer support online board. Haven't had much success. The hospital offers all kinds of classes, but they are ALL at night and that's when I am totally beat and driving 45 minutes to bang a drum and chant...naw, don't wanna.
Halfway through next week. Dreading it already. Dh is going to be out of town (as he has been 75% of the time so far)...and that's OK. If he isn't home I don't feel 'on'. I have faked feeling OK so he won't feel like he can't do his job. ANd he needs to, b/c he's making serious OT and we can use that!
I also got a job--one I applied for last December. The person that was hired couldn't handle it (bwahahaha!) and so my old boss contacted me and asked how soon before I felt up to working. I'm hoping Dec 1...this has given me a lot of hope, as I wanted to work PT and need someone who will be understanding!
All in all--just ticking along.
I have never in my adult life--shoot even as a kid, have I put my wants or needs first. It has been SO out of my 'wheelhouse'..that I actually feel guilty over stuff that has NOTHING To do with me.
Already have a call in to the therapist. She's not on my insurance, so I'm $120 out of pocket every visit. I think I need a boost in my self esteem and for her to remind my that I'm valuable.
The trip to WA? On the back burner. Dh can do what he wants, but if I feel uncomfortable or even sick (it's only 4-1/2 weeks away)...I simply will not go.
The tickets only cost $215. My gosh, how many times have I wandered into Costco for a rotisserie chicken and TP and walked out with $400 worth of...?
All in the perspective!
Yard guy showed up and did a great job. Wants more work, so I may see if DH will hire him for Saturday and they can clean the garage. No way I can do that, which I usually do.
Just gotta get through one more day. in 24 hrs I will be DONE paying to be poisoned!
You can just put my check in the mail;) How is that for some humor? ((Hugs))
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.
Then---just healing. He said to take to the end of the year and really baby myself as I am still really 'sick' but will start to feel better in a few weeks and then slowly come back to my 'new norm'.
Gotta get the kids on board with not stressing me out. Gotta accept that my mother truly doesn't care about me and also need to gently let go of some toxic people in my life, inclusive of some relatives.
Thanks to all the kind souls who took this journey with me in cyberspace. I felt the prayers and good thoughts and kindness.
This whole ride has changed me forever. I've yet to figure out why I went through this and why it happened and what to do from now on. I know not to waste precious time and energy on people who simply don't care. But to still love them. It will be challenging, for sure!
While he was gone I simply buzzed the rest of my head. One you get used to it, well, it is what it is. Better than having swathes of thin hair all over the house.
For a while there I looked like "Gollum" for LOTR. NOT a good look. I kept saying "My preciousssss" all day and cracked myself up. Too bad nobody was here to appreciate my bad impression.
Dh was up, packed and out the door for a week long trip by 5 am. I know it sounds absolutely heartless, but if he didn't go fix this problem, United Airlines would have had to ground 1/2 of their fleet. He did ask me what he should do and the answer is pretty much always "deal with work". He came down to say goodbye to me (I was awake and reading at 5:30 and he apologized for pushing me so hard yesterday. I said it was ok, fly safe and save UA!) There's nothing to be gained by chewing him out for being insensitive. He'll have learned by the end of this, I'm sure. He did get a kid to mow the lawn, he got some of the laundry done and he made his own bed (sort of). Baby Steps.
On the very plus side, he is working so much OT, it more than makes up for what I make at some PT job.
2nd infusion in 2 days. I am going alone, and OD is coming to get me afterwards. I will probably enjoy the relative peace and quiet. Fingers crossed that it's no worse than the first one.
I cannot begin to thank you all (and many others) for the constant stream of prayers that are going up in my behalf. Every day is a day closer to being cured.)
Do you get to choose the music you listen to while you are seated in the Throne of Infusion? If you have a minute before you go, tell us what you’ve selected (or WOULD select if you could choose for yourself).
If you print your music selections I will listen to what you have chosen while you are receiving your infusion, and by doing so, will have yet another channel through which to share with you my hopes and comfort.
We CARE about what is happening to you. Daydream, place yourself in a state of peace, open yourself to the healing properties of your medication and the skill of your doctors.
Every day is INDEED closer to healing and cure. Please report when you feel up to it. SOON, the 2nd infusion will be behind you and you will be a step closer to being 1/2 way through!
I hope and pray for a GOOD infusionist (they start the IV with a huge needle) and one who is more on top of the game. The last one was quit sub par, and I didn't say anything, just, I'll be more aware tomorrow of the time----no need for my beeper to be going off for 20 minutes as she chats away with her fellow nurses. I need to get in and out and be DONE. I get super, super anxious being tied to one spot. I hope and pray the prednisone doesn't make me too cray-cray. Ihave several Netflix mini-series set up and hope to burn up the 3 days post infusion with those.
Mostly, just amazed at how quickly the 3 weeks went between last infusion and this one.
Again--thanks to those who think of me and pray for me. I do feel it. I need it.
AND I AM BRINGING MY OWN SUPER SOFT PILLOW THIS TIME!! This pillow is magical, I swear.
45 minutes later my yard looks fabulous and my neighbor's drooling over a Texas Sheet cake.
Sometimes angels are 250 lb ex-football players in a suit and tie.
i was married to a jerk like that, a preachers son, for 21 yrs before i could get away from him. There is brighter, better days ahead for you! Much love and healing blessings are being sent your way!!!!
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