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.
Hang in there! We are all praying and rooting for you!
It is not the real you we all know that.
BTW, you are still making good sense.
I have tried to be a stellar patient, and honestly, if they wanted me to come all the way to the hospital (where the SICK PEOPLE ARE) to have the doc look at my lady regions...naw, I will work through my PCP.
I think that there have been SO MANY side effects, they couldn't hand out a brochure with them listed--nobody would go willingly into chemo. I have 2-1/2 pages typed out with all the s/e I have had. Single spaced. DH asked me one night why I was so 'b*tchy' and I got the list and handed it to him. Said "I have more than half of these going on RIGHT NOW'. YOU pick 25 of these things you'd like to deal with simultaneously, let me know.
He was aghast. And hasn't said anything about my 'b*tchiness' since. He really has very high standards for my 'behavior'. If I cry, I'm "out of control"...the list goes on. I had hoped he would have a kinder takeaway from all this. He won't. Nothing will change.
Last night I texted him that I was feeling so lousy I was going to bed and that dinner was in the fridge, he could heat it up. He responded "Can I get you anything?" and I asked for a Smoothie from Mc Donalds (they are mostly ice, actually). (Major chemo blisters...ugh)
He got home about 8 and I could hear him banging around the kitchen. He never came downstairs where I sleep, so I came up, thinking he maybe put the smoothie in the fridge. Nope, he forgot to get it. So he did run get me one, but it sure would have been nice if he had just 'thought' of me. He apologized and it wasn't a big deal,. but it got to me that I bothered to do all the stuff for him all day that I do...and he can't think of me long enough to swing through McD's adding a grand total of 5 minutes to his day.
This will never change, but sadly, I do take it personally when he inevitably forgets me.
Ah well, one more week and he's off the hook. Not that he ever was 'on it'. He will not be at my last infusion unless some things get moved around at work. 3/6...I guess it could be worse.
Hope your doctor's can Rx a comforting spray on for your blisters, or something that can work.
We often suffer, not knowing that there could be something to ease the pain and discomfort. You might not have complained?
Please consider giving them a call.
I found out on Saturday that sometimes the day after a deep low point can be unexpectedly brilliant. May tomorrow see you bounce right back.
Have they given you one of those postpartum inflatable rings to sit on? - would it help?
One week to the end. And guess what? Dh can't go with me. He's trying to work it out but he has several drs appts that same day and they cannot be changed, having been made 6 months in advance. Ah well, he made it to half of them, that's better than I thought it would be!
Feeling some of the yuckier side effects the last few days, so walking AND sitting are both very painful (chemo blisters on all mucous membranes, draw your own conclusions as to where and how bad these can be...) and I know just a couple more days and these will be gone. A slap in the face of some horribly bad news from my son (who doesn't live near me and rarely calls or reaches out) and I am still reeling from this. It's deeply personal--and so I cannot talk about it to anyone but DH and he doesn't WANT to talk about it, so, what can I do? I'm supposed to be keeping calm and not having any stress---can't do much when stress slaps you upside the head. This wasn't even news my son had to tell me NOW, it could have waited months--but he thoughtlessly shared it and I have been alternately crying and praying for the last 2 days.
Kids--whether they are 4 or 40 will bring you the greatest joy and the deepest sorrows.
I am looking forward to the last infusion next Thursday. I am supposed to leave 10 days later for VA to see my daughter. Worried I will be too sick to go.....and nothing I can do about that.
So.....all around, a pretty bummed out day. But, tomorrow may be better. With cancer, you just have to keep on hoping.
I have no intention of giving up--so close to the end---but I look very sick now, and it's hard to want to go places. Funny, now that I am almost done, I look horrible and it will be some time before I LOOK better, but should start feeling better in about 3 weeks post chemo.
I appreciate all the kindness that has come from this site. My own mother has not bothered to check on me in anyway. Heartbreaking, but makes me realize how little she truly cares. I guess that's good to have settled.
please take good care of you, you can do this!! Its almost over now!!!! And sure praying you can be able to go see your daughter.....much love and many blessings to you 💖Liz
Prayers, and good thoughts coming your way!
Chemo this week was a breeze--really. When they are super organized, I can get in and out in 4+ hours--most have taken up to 7. You get so frantic with that IV in...I gotta find a happier vein for the 6th and final one in 3 weeks!!!!
I was very sick that night---had a panic attack/heart palpitations that lasted a couple of hours, quite painful, but not unusual. Came upstairs and asked DH to please pray with me---it was only about 8 pm and he reluctantly did so, then asked me if I wanted to go to the grocery store??? He's so checked out sometimes...and I said "no, thanks, I can't really swallow until this passes, I'm fine". He went to COSTCO and bought a giant bag of tortilla chips, a huge box of cookies and a bag of his favorite chocolates. WTH? Good thing I didn't need to hit the ER, which is what I'd have to do if the palpitations last too long.
Sometimes I think my DH is autistic or just completely clueless. I'll never figure him out, I give up, truly, trying to decide what he's going to do next.
Oh well.
3 more weeks (slightly less---19 days!) and the final chemo. They have this huge Chinese gong that you get to wallop after they unhook you from your IV after the last infusion. I plan to knock that thing off its stand.
If I have any strength :)
I can see the light at the end of the tunnel. I know I am currently cancer free, some of the effects of the cancer itself are reversing themselves...sadly, of course, not hair growth, but physical things like my fingernails growing in strong. The fatigue is incredible, but that's dealt with.
They tell me it will take 3-6 months to begin to find myself again--and I haven't really been that "down" through any of this. Like, I don't go to bed for days on end. Yes, I get a nap in the afternoon and I may or may not actually sleep--but DH proved to be just as poor a CG as I thought he would be, so getting back into housekeeping won't even make a difference, I never quit. He never even picked up a broom. Only loaded the DW if I said "Please load the DW". He also now makes his own bed, for the first time in 6 years.
So, yeah, we made some progress, in that dept. (I'm laughing, b/c he did almost literally NOTHING to help me).
Whatever. I didn't expect it and it's almost over and I can go back to life!!!
Just thinking I should change my 'name' to MidKid63 as I have aged 5 years since I joined this site!
You can get through this and come out the other side doing great, too! Keep the faith.
You have been a selfless person, always supportive to others and especially your husband, but you do need to cut yourself some slack, as you do undervalue your contributions to others and we have all seen how truly Amazing you have been to your spouse, your family, and your friends over the years!
I pray that your upcoming Chemo is less harsh and that soon you will be on the way to good health and feeling good again. Try not to worry about the yard and garden and accept all household help that is offered. I too appreciate when the kids offer to do things that need doing, instead of cards, chocolates and flowers, hee hee, but those are nice too! Thankfully we've got pretty nice kids who will help without us having to ask, as we generally not comfortable asking for a lot of help, so its great that they are not oblivious and are self aware and will just pitch in on the obvious.
It's Wonderful your neighbors are so nice to you in your time of need! You will have plenty of time to reciprocate once you feel better! Prayers for you as you get to the finish line, and try not to do too much, rest up and let your body heal, as you well know, the rest will be waiting for you once things back on an even keel. Take Care!
PS, tell your hubby to do his own damn laundry! Grrrr!
Support and prayers Midkid.......
Oddly, I am really depressed about it all. I feel so many 'feels'.....gratitude for those who have stepped up and shown such love and befuddlement at those (family, all) who have not even bothered with a phone call to see if I am OK.
After TX is done, I am definitely going to cull through my 'friends' and not waste precious time on those who don't waste time on me. Not angry, just, why? I won't be mean and they won't notice!
Feeling really down today and really sick. But I have to go pound down a small steak. I worry about being denied an infusion b/c my protein levels and iron are too low.
Ah well--family dinner tonight. Haven't seen the grands in weeks. I'm worthless at night, just so darn fatigued---but at least I'll see the kids.
I can do three more weeks, right? I'm not counting the last infusion as 3 weeks, because after that, I will have the side effects but I will start healing!!!!!!!!!!!
I really appreciated my wonderful-beyond-wonderful neighbors who have tucked me under their wings like a little sick chick.
My 'yard boy' never showed up all week and the lawn was looking bad, but I figure DH would either call this kid when he got home or mow the lawn himself. I would have done it myself, but I A: have zero energy to even push the lawnmower and B: am NOT ALLOWED to be outside in the yard amongst flying fungus and stuff--so yard work, which I dearly love, was on the NO list.
I am sitting on the couch, cross stitching things for Christmas, and quite honestly, feeling really sorry for myself and I hear the lawnmower and don't think much of it, as R mows his lawn all the time. Took me a few minutes to realize he was mowing MY lawn. And because it was so thick. he was hauling the full catcher bag to HIS house to dump in his garden. 2 swipes of the lawn, haul the bag...and this guy is Asian and 5' tall on a good day AND 74 years old. I went to the door to thank him and tell him to just dump the clippings in our trash and he said "It's no big deal. I was starting to worry you'd give up and do this yourself and you CAN'T!" Sweet man. It's HIS wife who has fed me 3 times this week and brought me the peach pie when I was so low.
Folks--I tell you, angels wander this earth. These two (and their family of 5 girls) have been the greatest blessing and joy to us as we've lived here so long. I mean, I know I have TRIED to reciprocate the service they've given us and I have fallen short.
DH will come home, dump his laundry and possibly take the hamper downstairs for me to wash his clothes, he will complain endlessly about this job which was NOT ready for him, he will probably go to bed at 4 pm and won't be up again until Monday morning. He deserves the break--I will try not to complain about my herpes outbreak (part of the s/e of chemo---and it's really yucky) and will fix him meals he'll eat in bed as he carries on like a little prince....but one thing I am going to INSIST he do, and that is to go next door and THANK our neighbors for doing 'his' job.
Seriously---angels are here and they are amazing. I'm feeling sick and blessed today.
MY TAKEAWAY from my cancer tx is this: I am going to aspire to be as good as my neighbors. I won't make it, but I am going to do my best.
Hoping for some more peach pie for you. and more steak if you can tolerate it.
Do you have all the food you need stocked in?
Your daughter really does love you! I agree!
So I let my tummy issues get bad, and had a few lousy days. Last night I was just in such a funk, DH has been stuck on a business trip for 15 days with no end in sight. I have already mailed him one pack of pills and I will probably have to mail more....if he doesn't get home by Saturday. In truth, not having him here has been better. I don't cook or do a single thing I don't want to do. He comes home and we have to readjust everything----he has texted a few times, but by the time he's out of the plant and has gone to dinner, it's 11 my time and I DON'T want him to call just to tell me that the job isn't going well and he's angry about it.
Anyway, I just sent up a prayer for an angel to come lift me up and within a few minutes my sweet neighbor came over with a slice of fresh peach pie and my daughter texted me to say she was going to come down and scrub bathrooms and floors for me this am. She knows how I like to be 'loved'.
That pie!! I savored every morsel and wept while I ate it. And texted daughter back and said "Yes, come and just talk to me while we clean". We had a little cleaning spree and I do feel better.
The smallest gestures bring so much hope. Just when I think I cannot do another day, someone sends a card, or calls or just sends a kind message.
Oddly enough, my own brothers and sisters have pretty much ignored me. Mother called once, after she'd spent a lot of money on a fruit arrangement that was not delivered on time and was ruined. She was angrier about the ruined fruit than the cancer. She got her money back---and I am sitting here shaking my head at a mother whose kid has cancer and who cannot even make a phone call.
I'll never figure her out.
Thanks, as always for the kind words. They do lift and comfort me. I can do this hard thing!!
INfusion clinic had been closed Monday so they were still playing catch-up--and I had to be a little aggressive about 'hey, I have been here 90 minutes already--don't I need blood work and a dr visit so I can get going?" They had just slipped by me--after that they hustled me right in. The doc just did a real quick check and said "your color and energy are noticeably better--I'm just sending you down for your infusion now"--so although I could have been home by 3, I was home by 5, and that's OK. Chemo REALLY kicks your butt. My daughter came up to sit by me and work while we chatted and I dozed. I so appreciate her, she is so busy but has made the time twice to do this for me. She doesn't just show up at the end to pick me up, she gives me her time, which is precious.
I called DH and actually caught him in the hotel before he went to dinner, he said he was feeling really anxious and I said "I packed your AD's in small plastic pill pack. Take one with dinner and take one tomorrow. You can't go off those things cold turkey, Superman." He did text this am to thank me for sending the rest of his meds and said he did take an AD last night, one this am and already noticed a difference.
I slept like a rock (that has to get up for the bathroom every 2 hours on account of the gallon of fluids they run through me!) But I took my prednisone dose at 3 am along with a pain pill and I slept pretty well. Will take a nap today and wil fuss myself this weekend as much as I can.
So happy to cross "Sept. 5th" off the calendar.
Read my clinic notes and the dr had made a note that I was planning a trip to VA and needed/wanted to stay right on track with chemo. He said he felt it would be workable. Also said I seemed "Aware and emotionally stable" which is always nice to read when all your life you've been told you're a basket case. :)
BTW--the RBC and iron did come up, so all that steak--worth it.
Mad at the fact I have only lost 5 lbs since the start of this--but the doc explained that my metabolism is fighting weight loss by hanging on to as much fluid as possible and 'protecting' the cancer. Since I did lose 5 lbs in the last 3 weeks is better than gaining. That was also a cancer 'sign' that I didn't pay attention to. You assume weight LOSS and weight GAIN is just as likely.
Hoping I don't need radiation, but if I do it will be in November. Doc doesn't think so---but I', emotionally prepping for that eventuality!
Thanks for all the kind words.
You are being so brave about all this! I am thinking of you and sending good wishes and I know many others are too.
Hope you are sleeping or at least resting well after today.
If not, distract yourself with some happy t.v.
The angels of protection, sent by God, are all around you, to guard you in all your ways.
Be patient with yourself, you can get through this.