Just got a call from my doctor and after the PetScan and a Bone Marrow Biopsy earlier this week--he sees NO evidence of cancer--not even enough to warrant radiation!!
I am so mixed in my feelings--happy but tired still---which I will be for some time still.
How funny that 'good health' will be the new norm?
A huge shout out of thanks to all who sent me words of support and love and prayers!!
My takeaway from this? Be a better, kinder person and don't 'dump' friends when they are ill. Be there for them at whatever level they may need.
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Insurance will NOT pay a dime for the aftercare Rituxin infusion, so it was an easy decision to make. Even with the financial 'cut' the hospital would give us, it still comes to well over $150K and we simply don't have it--well, we can cash out our 401(K) early, but this would mean we cannot buy the 'retirement' house we'd wanted. Our current home has like a zillion stairs and 1 car garage that DH parks in. It's a great house for a young family and a nightmare for elders.
My trip to Seattle was actually a real nightmare. I was SO SICK and my DIL and son got really angry b/c I didn't join in on as much as they had planned---as I TOLD them I wouldn't be able to do. Christmas day they videochatted with me and ripped me to shreds for my 'bad attitude' and negative comments to everyone about what a lousy trip I had (I hadn't said much to anyone, except that with 3 wild boys and a crazy dog, their house is quite chaotic. That got back to them and now they are not speaking to me.) This 'chat' was within earshot with the entire family. Being attacked like that--not cool. They want me to be perfect and I am far from it. I wish I had not gone at all---they are so angry and unforgiving. I handed the phone off to my DH and went and packed up our stuff and got in the car.
Of course, I wrote a long email to them both and apologized up down and sidewise, but I have heard nothing in 5 days. They didn't even bother to acknowledge the gifts I sent and didn't get us anything (they never do, so, whatever) but they didn't even give us a Christmas Card.
I don't know what to expect, going forth. They never acknowledged the cancer, never called or troubled themselves to see how I was, so to them, maybe they felt it was not important. I feel so sad, 17 years of bowing my will to theirs to keep peace in the family. Maybe it's not worth it.
Of course, DH said nothing and will never say anything except the same "Oh, you know your mother has mental health issues." Like that helps.
Just a rant. Time will heal this and if it doesn't then there's just going grey rock with them and not having much of a relationship. It happens, I barely speak to my son anyway, it's not much of a step to stop completely for a couple years.
I hope 2020 is better. I'd say it couldn't be worse than 2019 but I won't tempt fate. I have been blessed by this community and the 4-5 good friends I have. DH couldn't be supportive and I forgive him for that. He currently has a man-cold and I have filling his hot water bottle, giving him cold meds and hot soup round the clock. He won't even get out of bed to get a cold drink when he's sick. I have officially done more for him in 36 hours than he did for my entire chemo regimen.
Whatever. I AM feeling better and for that, I am supremely grateful.
One sees TV ads for cancer treatment with happy smiling faces of patients doing their daily routine. Yeah right, in who's dream does this happen? The ad tells of the side effects, which are very common, and THAT should be shown to let the world know how one really does feel.
My sig other was no help to me, either. He felt he was doing his share because he was taking me back and forth to the doctor, and had to sit in surgical waiting for my cancer surgery to be over.... oh poor baby how did he survive that hour and half wait.... where is his parade :P
Take one step at a time. Do what you feel comfortable in doing. Don't over do it, as the next day you would be down for the count. I found going out where there are crowds, like dining or shopping, was too much for me. Home was my comfort zone. Then when the time was right, going back to work was a great distraction. Distractions are a great healer.
I know when I was in remission, the oncologist wanted me to continue a certain pill for another 5 years. No thank you. I had enough issues with the side effects. I will take my chances !! All of this was ten years ago. Even my surgeon had agreed with me.
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Yes, I'm, cured, but he wants me to do a bi-monthly infusion of rituxin ( the main chemo poison) for the next two years. This is something that is relatively new and may or may not be covered by insurance and we don't HAVE $200K kicking around to pay out of pocket--so I was a little bummed. I guess a 'cure' is just a term for 'well, this is gonna get you eventually, let's do the best we can to keep you just off balance enough healthwise you won't feel like yourself for a couple of years still".
Just feeling sorry for myself. I did tell him I would do it , even thought he gave me the option to simply stop all tx and just live. I'm tempted to do just that--and see him twice a year for who knows how long---but I would like to hedge my bets.
It won't cause more hair loss or anything other than the normal s/e I have dealt with for the last 7 months---just kinda hoped to not see the inside of the infusion center again.
Ah well--while I was waiting I talked to a lovely man who was with his wife who is now in the final stages of breast cancer. 4 treatments...and now it's in her bones. They're just buying some time for the holidays. They were so sweet together and he was so attentive to her (and there I sat, as per usual, DH didn't want to come)....and so I asked the man about HIS take on his wife's battle. He was just so loving and sweet, I could not help but cry a little. I would have liked that, even just a little from my DH. The man went back with his wife, but stopped and gave me a hug and said "Your husband is probably simply terrified at the thought of possibly losing you. Give him that".
And I will. He was an absent caregiver and as hands off as he possibly could have been--but in his heart, I need to believe he cares.
Hair is growing in, I look like a little lamb. I just have one bald spot right on the top of my head that looks so funny. I literally count the new hairs every morning.
My sister is having to battle lymphoma now, 2nd chemo after Christmas.
I don't want either of you to give up! So I will be here for you in the long run.
It’s encouraging that DH has volunteered to skedaddle you out of your son’s house, if tensions are running too high.
Should the need arise, hold DH to his word.
There are million ways to celebrate a holiday. It does not matter if your way does not match someone else’s expectations.
Take care of YOU. Everyone else will be fine.
I won't be the one causing problems--I still have chemo blisters in my mouth (think nasty canker sores), throughout my whole digestive system and beyond. Talking is painful. (Trying to be delicate). Even sitting is cruel...but they're slowly healing and yes, I have medication for them so at least they are under control.
One day at a time!!
Feel better soon!
Keep eating steak like you have to keep up your iron.
Enjoy Thanksgiving at your Son's, maybe an overnight in a hotel nearby?
Whatever you need, you should have it!
Had no idea about the eyebrows, never would have occurred to me. Feeling dumb here. Thanks for sharing that. Talking through your illness has also helped some of us understand what friends have gone through. So really, thank you!
Happy Thanksgiving, with so much to be grateful for!
Son's house is roughly the size of a small hotel, so no problem 'getting lost' in there and nobody will miss me.
I just asked DH to PLEASE have my back and not let them harangue me about anything. If it gets bad, I will toss over $500 and go home. A big part of the 'drama' is that have not seen me since two days after my first infusion and I looked OK. Now I am bald and sick and it IS disturbing. I'm used to it--and my hair grows fairly fast, but I won't look like me for months.
I DO need to eat more protein, it's just that nothing tastes good! Today was a "I wanna sleep all day" and I am going to eat dinner here in a few minutes and then crawl in bed with a book.
It's weird--I'm 'cured' but I'm still really sick. Now my hair is beginning to grow back and in a few weeks I won't look so weird. (Last night DH and I were watching football together and I randomly asked him if my bald head had bothered him. I could tell he was hesitant, but he answered "yeah, it did. It reminded me 24/7 that you had cancer and that was hard".) well---a little too late, maybe, but it did show he was worried all along.
Dr. reminded me to be good to myself and get a lot of rest. AT least through the holidays and then one day at a time. In 2 more months we'll do another PetScan but I think since he didn't order up a round of radiation--I can relax a little.
You've all been there for me and that has meant a lot. I could be super cranky and angry at DH and you didn't judge me for it.
Looks like I WILL be going to my son's for Thanksgiving, but DH has said if I feel uncomfortable or anxious he'll fly me home. Good to know I can escape if I need to. I have not talked to my son at all in weeks, so I don't know what to expect. He is incapable of being 'calm' and peaceful and I will take my laptop and some books and hide out in the room.
I am so happy, but you can't tell looking at me--eyebrows make for a lot of emotion, you'd be surprised!
Hoping this good news helps your husband realize how important you are and pays you the attention you deserve. That man needs an epiphany and maybe this will do it. From what you’ve described in your posts he needs an infusion of “warm & fuzzy”.
Did he take you out to celebrate? Bring you flowers? Goodness I hope so.
Yay! Fantastic! Fabulous! Terrific! Wonderful! 🎉👍🏻💗😁🌷
So glad to hear the good news!
We are all so very happy for you.
God has blessed you greatly.
Feeling better is just around the corner.
Midkid has won the battle!
I am so happy for you!
I'm so very happy for you!!!