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.
Do you have some cozy distractions in the pipe to amuse yourself during tomorrow’s infusion? Maybe a mega portion of some mind lifting yummy that you can laugh with? Eyes closed and thinking your most favorite thoughts and places and people and things? Music favorites? A meditation app?
Do do you have the time today to make a little list of YOUR favorites? Hoping whatever you choose to do uplifts and supports you, and looking forward also to hearing from you in your next successful post.
Still foot stamping away your fears......... ann
I’m pulling for you all the way. Praying the whole time! It’s funny. I struggle praying for myself at times but I can and do pray for others.
Every once in awhile while praying for others something I need is resolved.
I admire your outlook so much. I find a person’s character comes through when faced with a serious challenge like you have and I have to say that I have been impressed with your responses long before facing this, but even more after seeing how you have faced this roadblock head on. I’m really proud of you MidKid. Perhaps I am a little jealous of your strength. I don’t think I would do nearly as well. I’d like to think I would but I do know my limitations and I tend to get in my own way.
I have a lot of work to do in a lot of areas. I just want to say thank you for inspiring me. I will keep trying to face my challenges in a better way because of the example that you have shown to all of us.
What kind words.
In actuality, you don't know me at all--but I am glad that your takeaway on how I am handling this is that I'm being strong. I'm definitely trying--and trying to put myself first, which is something I don't do well.
I am actually more then 50% of the way "done" when you count May 20th, the day I was dxed with cancer to be "day one" I'm 87 days in and 63 left to go---b/c I am not including the days I won't have a calendar hanging over my head with infusions dates, etc. on it. Just the one or two for testing post TX.
I am so fatigued now, it's all I can do to get through a day. The sides have all hit me pretty hard and fast...so hopefully that means I will rebound quickly. Who knows?
I've the unfortunate challenges of a DH who has had multiple health issues and maybe dealing with those, has given me some introspection. I don't know. I honestly feel very frustrated and depressed a lot of days.
Thank you for your prayers. I really do feel them. The initial "wow, we need to help her' has passed and a lot of people don't realize I'm still in treatment. DH says if they could see my 'chemo face' bald head and swollen cheeks--they'd 'get it'.
Dh had made a big deal about third trip and I had made arrangements for a lift to and from the hospital. I have a feeling his boss overrode his decision to stay until Thursday night and get home Wed pm so he can be with me. He REALLY hates being at the hospital, so I think I will simply encourage him to leave me.
Got up at 5:30 am and mowed the lawn. Manful effort, but it looks bad. And he only did the front and now I have to trim and sweep. Laughing a little b/c this has been so hard for him. Seeing things to do and doing them, not just letting them sit.
I'm doing too much and feeling the s/e. Ah well--I get whomped up with a load of prednisone for the 5 days of chemo....and that makes me crazy/anxious. I'll take that fake energy!
I know better than to look stuff up on insurance on a Saturday. Dummy! As I was doing it I thought " well, if I have any questions on anything they won't get answered today!". I have been curious about the actual cost of chemotherapy all Along, Nobody could/would give me an answer. A lot of the 'emotional care' is supposed to be handled by your 'person' but my 'person' is ME. DH has no clue how to call the ins co and ask the salient questions.
He is going to be out of town again for this infusion--man, can't catch a break. I think I will ask my neighbor to run me up and then have my daughter come get me, she lives 10 minutes from the hospital---it's a 'bad timing' one, I get done right at 5 when the hospital staff al leave and traffic is awful. My last 3 infusions (IF I continue--seriously, if they are charging me $25K per treatment, I'm DONE)--are in the early morning, which is what I'd prefer, the way they are now I am sitting around for about 3 hrs, waiting for the next step. Meh, It is what it is.
LOUSY weekend, I got MSG'ed (I am SUPER allergic to Monosodiumglutamate) by a friend's dinner and I just now am coming back to normal. That was probably the worst headache I've had in years and years. The 'cure' is almost worse than the bite, Imitrex is awful, I get one like that again and I am just heading to the ER for a shot to knock me out and stop the puking, My last ' migraine hospital run' was 21 years ago, you know I pretty much roll through these.
I needed a nice, productive weekend, and didn't get it, If I am not 'up' and dressed and asking for specific chores to be done, DH just stays in bed and sleeps and watches TV. I came up last night at 9 and said he'd told me to cancel the lawn service...…….was he going to mow the lawn and get the 5 items on the grocery list? (All 5 were things HE needed). He jumped up and took off and got the groceries and a 'close shave'--at a barber shop. WTH?? He wasn't going to church today, why the waste? Too dark to mow the lawn, can I get the service for tomorrow? He'd slept all day long.
I was sick all day and just beyond miserable and he could see that, but he had to cough and sniffle and say he thought he was 'coming down with something' so better not do dishes or anything.
Once more, I am grateful beyond words that I have not been that sick. Other than occasionally mowing the lawn and making a Costco run, he hasn't has to do anything.
This w/e was beyond the pale as being bad--and that's entirely due to the migraine. Anybody who gets those knows what I'm talking about. Every cell of your body hurts.
Makes the chemo side effects look like a walk in the park.
Sstart by reading this.
Then call son in law.
I'll be back.
Also this
https://www.rituxanforra.com/patient/tools-and-financial-support/insurance-copay.html
This WILL get covered. By hook or by crook. No worrying.
Try not to freak out or make any rash decisions.
Don’t try to wage a battle with the insurance company while you are feeling lousy.
Monday if you are feeling up to it ask the Cancer Center to start checking in to things from their end. They can communicate with BCBS.
Send is right you need an advocate. Does the Cancer Center have a Social Worker, Patient Liason, something like that?
You know there are no answers to be had today or Sunday.
Try to get some rest. I know easier said than done...but try.
Help from experts may ease your stress about it. Not sure, but there are Healthcare Advocates and other options. Can you start with the secretary of the doctor's office?
You said that you have done this for your dH, so it is doable. But it is harder for the patient to do this on their own. I hope you never need to decide not to have treatment based upon finances, denying the treatment you decided upon, and that the doctors advised for you. Put off thinking about this until 3 days have passed, so you can calm yourself down.
Yes, do calm down. There will be a way, you just do not know the answers yet.
One of those things that are upsetting, but require us to wait.
Is there someone you can talk to, even if it is about another topic?
Breathe, just breathe...3 deep breaths. Get up and walk around.
Drink water.
You need an advocate. Keep your eyes and ears open over the next few days.
We are still here for you...your forum/cyber friends are real!
Just checked my insurance company's payments thus far--we're out of pocket about $4K which takes us to the $10,000 out of pocket and then everything is covered 100%-----
EXCEPT---The ONE DRUG that is the most expensive of the 5 in the chemo infusion IS NOT COVERED..not a dime. And it's $22,000 PER infusion. I have 4 more to go, one this week and then 3 more.
Nobody is working the call center for BCBS so I can't get any answers today.
I realize I can work this out somehow-------------but it will take us down $122,000 for this one drug. We have it....in savings. But it will put off retiring by 2 years, and DH is pretty worn out.
I dealt with insurance companies for years with DH and his cancer and Liver transplant and all the other 'fun stuff' so I know not to freak out----but wow....just wow.
Sick all day yesterday and all night with one of the worst migraines I've ever had--my friend brought over dinner and forgot I cannot have MSG---so I had to ride that out. Then this.
Pray for a miracle!! If I have to pay for the Ritixmabad, (sp) I might just do one more Infusion and quit. Take my chances.
Arrrggghhhhh...insurance companies!!
How is it going, Friday already! Thinking that you will feel so much better by the time the job starts, so keep positive.
Sorry for having to do the Chemo and glad u have a new job to look forward to.
Prayers also for your healing doctors.
He will hear your prayer and He will Grant you thy Peace.
Re - the classes all being at the wrong time of day - I bet you're not the only one with your type of body clock. Tell the organisers, and ask around, and see if actually there is a whole quorum of people who'd prefer a daytime option. They've probably scheduled them for then assuming that it would suit most people better.
Sorry to hear about the side effects. I hope this upcoming week is OK, and that you continue to just work the program and get it done!
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 get the fear -- absolutely -- but I hope I gave you another perspective because the fear was the worst part for me. I wore wigs and my hair grew back more beautiful (baby hair). Get a soft chemo hat on amazon. It was comfortable and made me feel comfortable.
There are some wonderful people here! It really sucks that you have to go through this. The internet is your friend because you can talk anytime without having to be worry about how you are making your friend or family feel .. sigh. I didn't want to talk to anyone because I didn't want them to worry! Keep on chatting. The internet is your friend. If you can find a cancer board that may also be great for you. It was absolutely invaluable for me. Hugs and prayers to you.
I envision all the prayers and positive thoughts flowing like a river to God, who hears all and makes all things OK. A million thanks!!
2nd infusion was just not a big thing. I am hoping that this is the 'standard' for me...the PA was checking me over for the nodes (and they were enormous and able to be seen w/o even trying to see them) and--well, she was really digging in my neck and said "Ok, which side were these on?" I said "Right side"--and took her hand and guided her to where I of course, can still feel the 'edges' but she was absolutely astonished. I can take good news.
The nurse I got was not at the top of her game and almost gave me the wrong drug. I will have to be more aware of that going forth. She was so busy chatting with the other nurses that she let my infusion pump beep for quite a while., That and her anti-Mormon rants (I am LDS and appreciate that a lot of people don't agree with me, but this was NOT the place for a religious debate) I know that she held me back at least a full hour by just not being on top of things. My daughter came up to get me and she was able to work from there, but the nurse was not what I have come to expect. Meh. She got a good vein, and I caught the med mishap so all is well, but, wow, that could have been awful.
Aside from the Prednisone hyperdrive anxiety, I really feel OK. I have every single side effect, but now I know that's what all this weirdness is--I can deal.
As far as DH being gone--it was really, really a blessing. I could focus on me, entirely and not have to cook one meal. I can keep an immaculate house when he's not here.
I am COMPLETELY bald now---last week I had a spiky 'do' and didn't look too bad. I pulled off my headscarf and he actually had a tear in his eye. Hugged me and said "This makes it real. I'm so sorry"
That made going bald totally OK.
Looking forward---I can do this. Nobody wants to hear about your side effects, so I pretty much don't share. I see people there who are so very, very sick---I know I am very blessed.
Next tx is 2 weeks from Thursday. Then I will be half done. Lots of plans for post tx. I don't know if I will be tired and logey, when you're on Prednisone you feel like you can move mountains...and then comes the crash--probably tomorrow.
I did write my mother a little note to tell her that I cannot come visit her due her to feral birds and dirty cage (I just said 'the birds')...so I said if she wanted to know how I was she could get someone to dial my number or get FB open. I will not be talking to my brother with whom she lives--he has been telling people that I am making this up. Yup, he's an idiot.
Thanks again!! I love you all and appreciate the comments and support more than you'll ever know :)
There are tons of happy endings.
Humor definitely helps. My mom had a great one.
Thinking of you lots. Jenny across the street is s/p 6 years after her lymphoma treatments. Still walks a lot UPHILL. Feels great. I am 31 years s/p breast cancer and chemo, the bad estrogen negative kind with spread to two lymph nodes (which is where I found it and why initially they said maybe lymphoma).
Your humor is gonna be worth a whole mess of chemo to tell you the truth. I always found humor in it even if I was busy planning for my funeral! I learned a whole lot about what is good in life, which is just about everything if you can just keep healthy enough to deal with it all. Even your kids fighting looks pretty good. I didn't let people give me that old "think positive" bunk. To me, that is putting the burden for our cure directly on us; hey, wait, WE are the victims, not the ones responsible for our own cure. I will think whatever I want any day I want, and thank you very much. I did crazy nutsy things like playing solitaire and pretending how many cards I got up there was how many years I had to live. I would get zero up and say "This is just a stupid game". I would get 52 up and say "I can't live THAT long even WITHOUT cancer". I would get five up and say "Oh. Pretty good. Five. I can live with that." For about 1 year everything meant the cancer was back. Headache? It's back. Shins hurt?(they forgot to tell me the chemo would make my bones ache so I got pretty convinced it was then in my bones). It's back. Diarrhea? It's back. Step the wrong way? It's back and now my brain is gone, too. Year two it was less bad. Fewer fear bouts. Yeah three I forgot to be scared and even THAT was scary. Now I never think about it much at all and having another dx. at 77 would make me go through the whole nutty thing all over again. You can do this. You do it however you want to do it. Because trust me, EVERYONE OUT THERE will have THE ANSWER on how you should do it. Hee, that's part of the fun! They will drive you batty. But soon you will beat it and then you can drive THEM nutty with how they should do it. Keep posting. We are in your corner.
When you get home from chemo, just wanted you to know someone was here to check on you today.
Ms.Madge is right, rest and hydrate.
Caring about you, hoping you will not be alone for long.
Did nurses have any recommendations for the scalp - Aloe Vera or something ?
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!