Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
1 2 3 4 5
Happy belated birthday! And many more, just health filled ones. So many prayers going up for you and I have added to them. You are a wonderful example of grace under fire. Thank you for sharing your journey.
Helpful Answer (7)
Report

I certainly have noticed 2 things about 'friends'. The TRUE ones text, call, send a card, come by--and basically are THERE. The 'in good times only friends' slide away like runny jello.

I don't take it personally. I went to a funeral today for a lovely man whom we've known for 40 years. He and my DH both had liver transplants and were kind of bonded over that.

Anyway--it was my church community--and I haven't been to church for a few weeks. Some people kind of hung back and wouldn't even say hi to me, some threw their arms around me like I'd risen from the dead (not the be irreligious, but it was kind of over the top. Nice, though.)

Cancer isn't communicated by hugs or handshakes but I know a lot of people hear 'cancer' and actually ASK how long you have. I don't know. Nobody does, so that's such a dumb and thoughtless question.

I do have this 3'' scar on my neck where the dr took the biggest node out to biopsy. It doesn't look awful, but it doesn't look nice. I didn't cover it up today, just let people stare.

Dh is being kind of a jerk, so it's time for him to leave town. He is REALLY struggling with this stepping up thing. He has been home quite a lot, but unless I light a fire under him, he won't do ANYTHING on his own. Then I come across as nagging.

I don't know if he's feeling scared and unable to deal with this or just reverting immediately back to 'if DW isn't up, I don't know what to do'. He truly, truly cannot run a home. I have VERY detailed lists and I am putting a LOT less pressure on him to do anything than I maybe should. Since I don't feel AWFUL....I'm doing what I can do and that's it. I know I will get sicker, and I am holding on to that----he wants the daughters to come clean, but I feel he can keep on top of the house with just us two.

I can feel the other huge node has already shrunk quite a bit! When I am feeling kind of sickish, I feel for nodes. Knowing that the chemo is working--well, that helps me feel better.

To all my friend on AC---thanks for the prayers and thoughts and good wishes. Truly, I know this is like a river of hope flowing from earth to heaven.

I think I will enjoy a quiet week without him, when he gets back I have my 2nd infusion and he's already planning to drop me off for it and not stay. That whole infusion room, nice as it can be-still jarring to him from all his many, many stays in the hospital.

Poor DH, life is hard for him.
Helpful Answer (7)
Report

In your travels, have you come across the book "When bad things happen to good people"? Many people facing crisis have reported this book to be extremely helpful and comforting. I"m not sure of the policy of the website but here's a link where you can read the reviews etc.

https://www.amazon.com/When-Things-Happen-Good-People/dp/1400034728

Best of luck on your healing journey. Sending prayers and strength to you!
Helpful Answer (1)
Report

Ah, dang it, my hair is falling out.

That kind of thing makes it just too real.

Getting a SHORT haircut tomorrow and wig shopping with my daughters. I will do my crying at home and make tomorrow be a fun day.

I knew I'd lose my hair, I was told it would be between infusions 2-3--the nurse MEANT 2-3 weeks.

Ah well.
Helpful Answer (3)
Report
Sendhelp Jul 2019
Midkid,
Still here, checking in with our friend, "Living with Cancer".
Sorry you lost your hair. You still sound cognitively intact, if you were worried about that.

Glad to hear that your daughters will be with you on the shopping trip, and you are so generous to want to make it fun.

Please also give them something to do for you, like clean. You taught them well, I expect. Allow them your trust. Pressures on dH will build over time, so you both need a little help, for a little amount of time, along this bumpy road. I know you can be gracious and receive now, because before, you were required to do it all.

Cleaning is an act of love, imo.
(2)
Report
See 1 more reply
(((((((hugs))))))) midkid. You find find a great wig and your hair will grow back fine. You are a tremendous trooper.

Nonetheless it must be a shock to have it fall out. Remember, with or without hair you are beautiful and lovable.💖💖💖
Helpful Answer (7)
Report

There are cancer support groups, one in my area is called Circle of Hope. They are the ones who have cancer survivors helping those fighting the cancer with help, such as free wigs, a person to talk to, a group to attend.

Midkid, have you been contacted, referred to, or called such a group? Real help, small kindnesses, knowledge. I am for you getting all the help you need.

I hear you about church and the varied ways people treat you, many holding back not knowing what to say, and others with an overwhelming response.

I hope that the things I say do not offend you. But I visited you here today, because you count!
Helpful Answer (4)
Report

Well Midkid, I am so sorry that you are losing your hair, but let's look on the bright side...you will be able to have any hair color or style you want. Just think, any time in your life you thought gee I wonder what that type of cut or color would look like on me, you will be able to try and it won't be permanent. Plus, you get to have a day with your girls and just try to have some fun with it. I know...easier said than done. But like others have said, "your a beautiful person."


Lots of hugs!!!
Helpful Answer (4)
Report

Feeling pretty rotten today. No sleep, I mean, I never went to sleep. It's so weird how each day is so different than the others.

My hair is falling out in great swathes, Gross. My DH was out of town all week and asked me not to shave my head until he gets home. Well, he got stuck at the jobsite, and he missed his flight. If he isn't home in the next 6 hours....I will be bald.

Doesn't help that my face is swollen and my neck also. My friend came by the other day and commented that I really did look sick. In a way, that made me feel better. No amount of makeup can make me look 'ok'. I'm not comfortable with the wig yet, so I am rocking some soft caps.

Weirdly, my SCALP is so tender, That's why I could not sleep. It hurt to put any pressure on it at all.

Dh's old colleague is in town and he wants to meet up with him and his family in Park City. I am sitting here trying to manage some energy and it's not happening. He'll be unhappy if I don't go, but tears are close to th e surface and I don't want to see old friends and sit and fight tears.

My 2nd infusion is on Thursday. DH has to leave town again, so I guess I will enlist OD for a ride.

wow--the fatigue is incredible today. I hope it passes and I am a little more energetic soon. I do need to go take some brownies to a new neighbor and that's about all the 'socializing' I can do.

Just a wah-wah pity party. I'm fine, just tired!
Helpful Answer (5)
Report
Lymie61 Jul 2019
You go right ahead and party all you want with us! You are so amazingly strong. I'm thinking of you.
(6)
Report
Mid,

Just here to let you know I’m thinking about you.

You are so kind and brave to share your journey with us.

Please let others help you and don’t feel bad about it.

Please don’t let others (DH) expect too much from you and don’t feel bad about it.

(((Hugs)))
Helpful Answer (3)
Report

MID, I envision you as such a survivor. Stories of your family shows such endurance. You give all indications of strength. I will think of you with care during this journey. The duress of it can hard to imagine. So many I am sure look forward to your healing.

My daughter and son in law just closed on a house in Park City.
Helpful Answer (3)
Report
Midkid58 Jul 2019
They must be stinkin' wealthy----we remember Park City as this beat up old mining town--now it's jampacked with tourists. I kind of miss the old Park City, and NO we never go near it during Sundance! Crawling with PIBS (people in black).
(0)
Report
Mid,
Hear you.
You are still making sense.
Do not allow others to put social pressures on you right now.
There is enuff on your plate.

Get through today, even if going back to bed to find the rest you need.
Helpful Answer (4)
Report

Midkid, just want to send some hugs your way.
Helpful Answer (2)
Report

Prayers, Mid.
Helpful Answer (2)
Report

((Hugs)), Mid. We're here with you on your journey. I hope you are able to get some rest. Continuing to pray for a speedy healing and recovery.
Helpful Answer (1)
Report

Reach up as far as you can and God will reach down the rest of the way. Waiting for this to begin allows you time to think of the worst. I will pray it isn’t as bad as you think and that it is well worth the discomfort. God bless.My sister’s hair grew in beautiful and curly after her chemo!
Helpful Answer (4)
Report
Midkid58 Jul 2019
That's a beautiful saying!!
(0)
Report
I'm just a stranger sending prayers, Midkid. I get all caught up in my own pity party, then read about your journey, and it really puts things in perspective. I hope you feel better quickly and get some awesome results from your treatment.
Helpful Answer (4)
Report
YardParty Jul 2019
I'm in lockstep with simplyexhausted--ditto that--and want to assure Midkid that we readers are pulling for her--and are praying for her as she travels down this road tomorrow. Hugs!!!!
(2)
Report
Hugs , love and lots of prayers headed your way keep us posted
Helpful Answer (2)
Report

Midkid,

Just be kind to yourself. Wishing you all the best.
Helpful Answer (4)
Report

Midkid: "Dh's old colleague is in town and he wants to meet up with him and his family in Park City. I am sitting here trying to manage some energy and it's not happening. He'll be unhappy if I don't go, but tears are close to the surface and I don't want to see old friends and sit and fight tears."

I'm remembering your telling us about all the days he lay in bed doing nothing. And he's going to be unhappy if YOU need to rest in the midst of grueling chemotherapy???!!!
Helpful Answer (6)
Report

CTTN--
Yeah, the irony is not lost on me.

He will 'take a day off to take care of me' and sleep for 24 hours. I cook and he gets up ti eat then back to bed, 'Taking care of me' is limited to me laying on his bed watching a movie he chooses. He just. can't.

He got stuck on a jobsite and didn't come home yesterday. Supposedly today and he wants to hike with friends tomorrow---but I am not going. I'd sit and have a lovely lunch in a little sidewalk café, but I cannot walk more than a mile and we'd be up about 10,000 feet in altitude . He will push me, I know. But I think when he walks in and sees that I am now 90% bald, and I LOOK sick, he may cut me some slack. We'll see how it goes. He does get a little upset with me--'I try to take you places and you never want to go!' Well, usually there is zero planning and I get sooooo nauseated on drives. Even not on chemo, he's a race car driver. I know that's HIS happy--it's just not mine.
Helpful Answer (2)
Report
freqflyer Jul 2019
Midkid, I have one of those at home, too. He just cannot handle me being ill. But if he isn't feeling good, the whole world must stop :P
(6)
Report
I used to say if men had periods they'd demand four days off every month and would probably get it too. And don't even get me started on menopause. They'd have go- fund me pages for that.
Helpful Answer (13)
Report

Well ,Dh came home and my hair was like 80% gone, He tried not to be shocked, but he was. He came home and was in bed and asleep within 1/ 2 hour. My scalp was on fire, and I was miserable, so I read for hours and hours and finally fell asleep about 5 am. I got in the shower at 8 and literally washed all my hair off. I have a little fringe of bangs, so it looks bad, but, well, it's what it is. He saw me like that and was still pushing me to get going and get ready to go hiking. I can barely do 15 minutes on the elliptical rider. So I just said "This is YOUR friend from20+ years ago. I met his wife ONCE. It is sweet of you to want me to go, but it's 105 degrees today, I didn't sleep and I would cut your day short. I'm not going and they should respect that. Did you even tell them I have cancer?" Uh, no he just said I hadn't been feeling well.

When he finally connected with the friend I heard him say "Buffy has cancer, I wasn't upfront with you." I could hear his friend saying "Oh my gosh! And she feels like hiking?" He did start the laundry and didn't argue with me about paying a neighbor kid to mow the lawn.

He finally left about 2 and I will be in bed before he's home. Oh, and he has to go right back to the jobsite he just left! Why in the world did he come home for 36 hrs? He needed his laundry done, I guess. If he had stayed he could have gone to my 2nd infusion on Thursday. Now I have to get a daughter to come fetch me. No big deal. It's a BREAK for them!. Hopefully it won't be worse than last time and I didn't need him at all. I cannot figure this guy out. I had a couple tears about the hair (what woman wouldn't ?) and he said "You have GOT to get over this".

SMH.

I am actually glad he won't be back home until after the prednisone rage. It wasn't too awful last time, but I will be better if I do not have to deal with him.

I don't want this to be a rant about my half hearted DH's help. He truly is doing the best he can. He was just raised to be fussed and coddled and I have continued that for 43 years. We're doing a 180 in our marriage dynamic and it's hard. I am going to get the SW this week and find us a marriage counselor to help out.

SUPER fatigued. Read about all the s/e....such weird ones. Burning scalp, bleeding gums, swollen gums, loose teeth--sheesh...nobody would sign up for this if they knew all the possibilities

I DID take a 'babychick hair' pic for our family group me and the kids were all so sweet. Then I added a couple with the wig and that made us all feel better.

Sure am grateful for central AC. Wow, is it miserable today!
Helpful Answer (10)
Report
Countrymouse Jul 2019
Hugs and hugs. You are a wonder woman.

I agree it's not fair to blame DH for how he is, no. But neither do you have to carry him, not for the time being. Be how you need to be and let him cope as best he can.

Love you xxx
(4)
Report
Mid- my prayers are with you. Big Hug
Helpful Answer (2)
Report

I am here Midkid supporting and praying for you. You can do this!!

Hugs!!
Helpful Answer (2)
Report

Midkid,
In all of this, you are being kind and generous to your hubs.
You have already won the biggest battle with your attitude.
Feel free to share these moments with us, who surely know
and understand how it can go with hubs in general.

You are Grace under fire.

Let it all out here.

Love,
From Send
Helpful Answer (5)
Report

Midkid - I'm glad you stuck up for yourself and gave yourself a chance to rest yesterday. I didn't realize that the hair loss came with a burning scalp - I'm so sorry you are going through that! The hair loss too but the discomfort and the loss of sleep - that's rough!!!

Just know you have a whole army of well-wishers here on this forum who are thinking of you and sending love and support every day!
Helpful Answer (3)
Report

Dh was gone from 2 pm until well past midnight. There is no way in the world I could have handled a day like that with any modicum of grace.

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.)
Helpful Answer (12)
Report
AnnReid Jul 2019
You are NOT “going alone” Midkid- this whole bunch is standing here stamping our feet to chase your concerns OUT!

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!
(7)
Report
Rest and hydrate, Mid

Did nurses have any recommendations for the scalp - Aloe Vera or something ?
Helpful Answer (3)
Report

Midkid,
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.
Helpful Answer (3)
Report

Midkid,
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.
Helpful Answer (7)
Report

1 2 3 4 5
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter