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so many variables

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I am so worried about my husband. The doctors are doing a lot of blood work watching for signs the hypercalcemia is coming back. Our chemo dr. told us on Monday that it will come back. David wasn't thrilled to here that. They had put him on a new anti-nausea regimen and it was working great until David started having vision problems so they removed the scholderma patch. Last night David had another hard night. He was actually thinking he might need to go back to the hospital. The widest part is not knowing if it's the nausea medication or maybe the hypercalcemia coming back. i finally got him out for a walk yesterday. We were out for 5 minutes and he was exhausted. It is so hard seeing this skinny man with hanging skin. He looks not too much like the man I married. He looks like he aged 20 years since we started this. He gets a picc line on Tuesday and starts chemo on Thursday. Radiation is going ok, except he really complains of dry mouth and is spitting constantly. The stringy mucus often gags him. I don't know how the people on this site manage to keep themselves positive. I've been struggling with this lately.

katenorwood
Posts: 1895
Joined: May 2012

Vivian,
I hear the frustration and pain in your words for David. Try to continue to stay positive for him and yourself through all these dark days. Know that you're never alone in this walk, we do care so much and will continue to hold you both up. Some days I just put one foot in front of the other....and think well today I'm still here, this is good. I so wish I could take away David's pain...my thoughts and prayers are with you both ! Katie

Grandmax4's picture
Grandmax4
Posts: 617
Joined: Dec 2011

Vivian, I can hear in your words, the frustration of having a sick groom...it does seem so unfair, but remember David is still the same man you fell in love with and married. My Bill was just diagnosed with rhumatoid arthritis and has been in so much pain and dropped about 50 pounds, I sometimes feel myself wanting to snap at Him to at least try to move around..the poor guy is going to work every day while they're trying medications to relieve his swelling and pain, and I'm being a ***** ( in my head ).It's just human nature I guess to wonder why me...Bill was a much better caregiver than I am, but I'm trying . You guys have had so much bad luck, hopefully when this is all behind you, you can make up for lost time. I think of you all the time and know exactly how you're feeling...take care of you too

hwt's picture
hwt
Posts: 2187
Joined: Jun 2012

I hate what you and David are going through. Time for you both to catch a break. I recall days of going to radiation with clothes hanging off me (lost 50 pounds). Weight loss seems more obvious on men and as we age our skin doesn't have as much elasticity. Great news that you got David out for a brief walk. Doesn't matter that it was only 5 minutes, it was a start. I truly feel that my brief walks, many times just 5 minutes, during tx made things much easier much quicker when tx finished.

phrannie51's picture
phrannie51
Posts: 4035
Joined: Mar 2012

but I'll just put my thoughts down here.

The one day at a time (or one hour at a time, if that's all that can be managed at the moment) is the only way to go. Not fighting battles untill they present themselves is another energy saver. Don't live on the edge about the hypercalcalcimia...if it comes back it does, but it's not there today.

A five minute walk is good...we've all been in that spot...to find out that you can hardly move yourself from place to place without resting...it was shocking, but it's only for now. I'd look into the mirror and see this OLD face and skinny body and would think "my gawd, this is making me SO SO old"...I looks worlds better now, with only 5 lbs gained back, but without treatments my face looks rosy and healthy...the body bounces back.

I guess what I'm saying...yes...for now, things are crappy...but things make a turn-around quickly once you get thru treatment...David will make that turn around, just like so many of us here have done...you WILL get thru this...David will get thru this...and you'll pick up your lives (and your forks) and move on. As Kent Cass says...BELIEVE!

p

katenorwood
Posts: 1895
Joined: May 2012

Vivian,
Hon., Phrannie is so dead on with this one ! Please remember that all of the people on site have Davids and your back ! P if I could I would give you a gigantic HUG ! Vivian....a huge one sent to you and David ! Katie

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Phrannie is so right on with what she said. I'm so sorry you both are going thru this, please try to remember it's only for now. I remember at one point while going thru treatment I looked in the mirror and I literally gasped at how terrible I looked. I swear it happened over night. I looked so old and frail. I have always fortunately been told I look very young for my age but not at that particular moment. at that point I started feeling sorry for my kids because they had never seen me look so bad. I can promise you tho, as soon as treatment is over and even before the weight gain happens you will see David start looking more alive, healthy and rosy again. It's been about 4 months for me and I haven't gained any weight back yet(Grrrrr) but my face is back to looking like me again. That actually happened rather quickly.
You are doing good to get David out walking, even for 5 minutes, keep it up if you can. Try not to worry about things you can't control and deal with each thing only as it comes up. Easier said than done I know but try if you can.
As far as the thick ropey saliva, that too will pass but it is no fun while it lasts. Sometimes sipping on hot tea or hot lemon water helped me a bit. Then after rads ended when it was at it's thickest soda or soda water was the ticket for me.
I wish I could come over and help you or at least give you a big hug. Stay strong and remember, the man you married is in there I promise he's just wearing a different mask for a while.
Take care,
Billie

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

I know, easier said then done. I think about you and David a lot and hoping that everything will turn right in the end. Just hang in there, one day at a time. Now this is all you can do: try to make each day as easy as you can. Doctors will help him when he needs it. Just have faith on them. When it gets harder thru the treatment they will do all the necessary things to make him better. I can only imagine how hard it is for you as his caregiver, his wife - you're just married.. and to go through something like this. Listen to others here - they have great and wonderful advice, great spirit and positive thinking! The way these people think and write here it is just amazing! Don't lose YOUR spirit!!! After every rain there is sun!!

My prayers are with you two!

V.

NoDuck
Posts: 134
Joined: May 2012

One day, hour at a time is so true. Also, try this mantra. It's an old dieter's line meant to remind you that you will be able to eat that pie or cake whatever it is that's tempting you.. It works well when you are thinking about all the things you and Hubby can't do right now:

Not never, just not now.

Deb

ditto1
Posts: 646
Joined: Mar 2012

look younger???? WHAT WHO SAID THAT. Well Vivian 2 or 3 folks have told me that. Before I was dx I was overweight and had a full beard and generally long hair. During tx I lost weight / lost my hair and to me looked like some alien had taken over my mirror. I felt I looked 10 years older, I to had some sagging skin from weight loss (Thank God for clothing). Last nite Diane and I went out to a business dinner she needed to attend so I had to put on the Ritz. Ive grown enough hair back to need to put a little spit (really water) on it to get it in place, I put on a nice shirt / britchas (pants) and for the 1st time since March spritzed a little stinkumgood prettyfum on. Off we went, I was a little nervous because many of Dianes fellow employees were also mine before I retired and no one had seen me since I retired. Well to my pleasant surprise I was met with many hellos and a few Gee you are looking so good and younger. Well sure maybe they were just being polite but you know what I felt I did look ok and maybe the new me (slimer and no beard and mustache)is not so bad. I hope I got the main point accross to you, your husband is sick now and going thru the toughest part, trust me no one would want to put most of us on a calendar during this part of treatment. Your husband will bounce back and although he is beautiful to you no matter what, the handsome man you married will make a comeback. PS You said you did not know how we keep ourselves so positive, TRUST ME all of us have not been positive at all times thru our travel but we all come to the aid of a fellow warrior or their caretaker when needed, they always did for us........

CivilMatt's picture
CivilMatt
Posts: 3291
Joined: May 2012

Hi Vivian,

Gagging and spitting is the norm, I had a whole rinse, spit, gag, and dry heave procedure every night for weeks (luckily I had a big utility room sink to myself).

There is no doubt your husband is on a rough path, but he is handling it (we all did). There were times when I thought “how much worse”, but there was a bottom and it gets much better, quickly. Taking a walk is great, these little things help (and matter).

As silly as this sounds, Phrannie most likely has both of you in her pocket and that is a guarantee to feel better. It worked for me just knowing she cared (and I fit real well after losing 44 pounds).

Best,

Matt

cureitall66's picture
cureitall66
Posts: 905
Joined: Aug 2012

I'm here, and you know that. We've been trying to keep each other up to speed on our loved ones and we know there are a lot of ups and downs right now. Unfortunately, we can't pick our battles, they are coming at us sometimes all at once. But, we know we can do this. The strength you show David will make him strong mentally and the physical strength will come in time. But when it gets you so down, maybe it's time for your walk. Don't forget about yourself. Just taking a walk away from the scene for even 20-30 min helps. Hang in there...and yes, we have to take one day at a time..it's really the best choice we have right now.

luv4lacrosse's picture
luv4lacrosse
Posts: 1412
Joined: Jul 2010

I too have my good days and bad days. I escorted my wife to a work function last light, (Black Tie) and looked in the mirror and was disgusted with what I look like. I cannot believe my wife would want to be seen with a person full of Zits, sores all over, wrinkled and aged skin, Etc. What I fail to realize is she loves me for me, not the exterior pacjage. I am confident when I beat back the beast again for the second time, I will get myself put back into shape and a good frame of mind just like the first time.

I think we have all felt this way a time or too, and it is at this time that we must just suck it up and do what our loved ones need and expect from us, and that is to fight to survive, no matter how hard it is.

It does not take but a minute for me to know how good I really do have it, when I have fellow brothers and sisters at CSN having a far more difficult time than I. That is humbling for me, and it puts me back in the frame of mind I need not only for me, but to lend a hand to a fellow warrior. I guess how we see ourselves and or the loved ones caregivers are fighting for can be tough, but always know there is someone else having it far worse that us from time to time.

Not sure my Psycobabble makes any sense, but hope it lends something usefull.

Best

Mike

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

You and David will be at the end as well.

I lost 70lbs during treatment. I was soooo sick. The mucus was HORRIBLE. Thick, gagged all the time. My body felt like I had been run over and backed over again by a semi. My daughter looked at me one day and said "I'm not used to seeing you this way Dad" ..she is 14. She was referring to my lost weight, aged face, tube hanging from my stomach and how pale I was during treatments ..much less probably the pain in my face and bandages around my neck.

I don't share this to "one up you" ...I share this to say when I now pass people on the street I have not seen in a bit ...they go "holy cow, you look good, what have you been doing"? I laugh and just tell them "extreme makeover" .... :)

You will have many days you will think you can not go another day, as David will too. But soon you will be looking back, looking great and feeling great and NED!!! Boy in our case the saying is so true, "no pain, no gain" ....

Best,

Tim

zaac23
Posts: 24
Joined: Dec 2010

In life it's the journey not the destination that matter; In cancer it's the destination not the journey that matters. keep the hope and faith, it will get better

ToBeGolden's picture
ToBeGolden
Posts: 696
Joined: Aug 2010

Just to let you know: I used a walker during the end of treatment and for about six weeks after the end of treatment. Treatments just take a lot out of the patient. It is important to do as much as possible for the patient. However, one cannot judge the patient's effort against anything "normal". I remember when just standing next to my chair in the ICU was a big accomplishment. Today, I can walk a normal distance, through supermarkets, down a forest path etc. David's stamina will return. Rick.

KareGiver
Posts: 295
Joined: Apr 2011

Yes, it is a struggle at times (many times). Day by day, week by week. So many of us understand and are here to help you through this journey. Take care and HERE'S TO TOMORROW!
Lynda

Pumakitty's picture
Pumakitty
Posts: 652
Joined: Mar 2010

Vivian,

I know you are going through a really rough time. Please hang in there and know we are thinking about you. Hugs and Prayers your way.

Kathy

luvofmylif
Posts: 344
Joined: Sep 2012

You are totally normal believe me. My husband has not had it as rough as yours and but I too have struggled along the way and still do. I sat in church alone without him yesterday as he is too sick to attend, and I just began crying and couldn't stop. Sometimes it just comes out. I still feel shell shocked at everything and really even though he was diagnosed in July I am just now accepting that all this is happening.

So, I wish you could know that you are doing a great job. It's not easy accepting that for right now this is your new normal but it won't last forever. Things will get better for both of you.

Joan

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

it may come down to more than taking it one day at a time. for me i feel down to by the hour and a couple times it was min. by min.

the fight has to continue, never, never, never give up.

so sorry you husband is having to go thru the hardest of hard times. the best is to know that if others can make it thru so can he. your part in this is to remain upbeat(positive mental attitude) when every you are in the room with him.

the little engine that could just kept chugging alone

so can the two of you.

prayers for strength and wisdom headed your way

john

yensid683's picture
yensid683
Posts: 250
Joined: Apr 2012

feeling overwhelmed, helpless, frustrated, angry and so worried for me.

During treatment she honestly felt that she was going to lose me, but I never felt that way (curiously). I took it one day at a time, and I encourage you to do the same. As so many others have said here as well, maybe one hour at a time, or one minute at a time...

When she got really scared, she'd listen to a song that is on the Dreamworks movie Prince of Egypt

************************************************************************************

Many nights we've prayed
with no proof anyone could hear
In our hearts a hopeful song
We barely understood
Now we are not afraid
Although we know there's much to fear
We were moving mountains
Long before we ever knew we could

There can be miracles
When you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe

In this time of fear
When prayer so often proved in vain
Hope seemed like the summer birds
Too swiftly flown away
Yet now I'm standing here
With heart so full I can't explain
Seeking faith and speaking words
I never thought I'd say

There can be miracles when you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe...

*************************************************************************************

So put your worries on someone else, it is what it is and that worry can only weaken you. David will need you, your strength and love to get through this most difficult time. We're here for you to lean on, we've walked the walk and talked the talk, take our strength and use it for yourself and your David.

Peter

yensid683's picture
yensid683
Posts: 250
Joined: Apr 2012

It takes time, it takes effort and part of that effort is really hard, knowing when to push him and knowing when to back off and just be there for him. I started treatments in April, completing rads and chemo in early July. I was a wreck with the coughing, the thick stringy mucus, the skin issues, no appetite, no desire to drink anything (thank god I had the peg tube) and it wasn't until September that I could stop the pain meds and it has only been in the last few weeks that I've felt more like my old self. The journey has been long, hard, frustrating and at times Lori and I were not the most civil to each other, but we've come out the other side of this crucible, and we're better and happier for it.

My thoughts and prayers are with you and David, may you find strength every day to carry on

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