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Can I get a hug????

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014

I’m not a very good CSN friend.  I read but mostly don’t reply cause I don’t have much too say.  I’m still learning.  Sorry!  I do a search for Fox cause he is my hero J  But I love you all!  I over analyze and I’m a control freak.  There is not much within my control for this cancer journey. 

I remember not too long ago, probably this year, the oncologist said to my husband after a scan:  “I have another patient with similar results that I have been treating for 9 years on votrient and he is still going strong”.  I remember feeling sad for all the patients that don’t get that great news because there is no rhyme or reason to the good/bad news.

6/4 scans everything stable.  Onc reduced Votrient to one a day to have less side effects since everything is working.  Husband has been complaining of back pain so Onc ordered bone scan just as a precaution.  Another happy day.

6/15 bone scan

6/19 results tumor on t8 vertebrae; so votrient isn’t working.  New plan.  trubeam single does radiation with an 85% success rate.  Plan is Affinator daily (but as of 7/10 still not approved by insurance) and zometa monthly.

6/25 hubby still fine; worked his usual 10 hour day.

6/26 First Zometa iv (as of 7/10 He has been in bed ever since. He can walk around the house a little but needs assistance for appointments; fatigued sleeping 15 hours at night and a couple naps a day. 2 tramadol every four hours does help with pain.  Very little appetite a couple days I made him 4 slices of a banana, 12 grapes, and 3 apples slices.    Chicken noodle soup another day.) 

6/29 husband has pink eye!

6/30 Votrient stopped per onc to prepare for radiation.

7/2 trubeam single does radiation.  I got up and went to work at 6:00 a.m. to make up some hours.  Left work around 10 a.m. to pick up hubby for radiation.  Got home about 4:00 p.m.  I’ve been complaining about side effects since 6/26 so Onc advised to go to emergency room.  Hubby has UTI; Got home about 11:00 p.m. What a day! 6:00 a.m. to 11:00 p.m.

7/5 I think I have pink eye!  I requested doc for more antibiotic drops for hubby for me to use. I don’t have time to go to the dr. 

7/8 Made apt with Onc for better quality of life. Prescribed ilynta since Affinator is not approved by insurance.  Now waiting on ilynta to be approved by insurance.  We talked about importance of nutrition.  He has lost 6 lbs in 1 week.  Hubby and I have met with a nutritionist early on and Hubby is not interested in “her way” of eating.  Stubborn man!  But he HAS to eat more so since he can tolerate it breakfast will be sausage egg and cheese biscuit.  Ensure lunch.  I’m going to buy him fast food burgers once a day for dinner.  There is no sense in me preparing and buying anything else he WON’T eat!

7/9 Went to the bank to do a Roth IRA distribution and change my name to my married name.  I was there two hours. 

7/10 ilynta still not approved by insurance.  Asked Onc if he should take Votrient since he has had no chemo since 6/30.  Onc said no.  Bank declined my distribution request because of error in the name.  Looks like I have to go back for 2 more hours to request again. 

7/24 next appointment for Xgeva shot no more zometa.

October next scans to see if it's working.

Us caregivers can’t neglect ourselves!!

7/7 appointment for me to get Anti D’s;

7/14 My mammogram;

I need to go to the eye dr. to get my eye’s checked, the drops aren’t working.  Soon I promise!

I have a new grandbaby that is not quite 2 months that lives here in town. My husband has a grandbaby that is not quite a year that also lives here in town.  But we can’t visit until I’m sure we are both clear of pink eye! 

Son just finished Basketball camp so I don't have that on my daily plate anymore. 

Hug Please?

donna_lee's picture
donna_lee
Posts: 999
Joined: Feb 2009

a BIG HUG.  And many more.  You and hubby have been thru a hectic 2 months.

AT one point in my journey, my PC Doc was concerned that the anti depressant I was on was causing side effects, so he changed the meds.  It sent me into a real depression, crying, really down, weight gain, etc.  I went to a psychologist/counselor for several sessions.  Guess what?  I'm the kind of person who likes to plan stuff, have control of events and happenings...and cancer took that away from me.  I had no control, period.

I called my Dr. and they got me in to see the nurse practitioner.  He said I just needed to lose weight.  Hah.  Three weeks later, I demanded to see my PC, and he agreed that side effects be darned and put me back on Paxil (Paroxetine) which had been working for years.  That was about 4 years ago.  It's been a bumpy ride at times.

As a caregiver, I agree, it's hard.  Last year at this time, we were doing the memorial service for my m-i-l after "death by pancreatic cancer," a very unpleasant way to go.  I wore myself out physically, mentally, and emotionally trying to care for her and keep the rest of the family members going.  Something had to give, and it was me.  I ran out of energy and enthusiasm to do much for a number of months---it's called depression.  The only "good" part was I lost 35 pounds and am keeping it off.  In the past 2-3 months, I've finally recovered the life I want to be living.  Joy at seeing the grands (ages 8-19), spend hours playing in the dirt (flower gardening), started attending meetings again (even cancer support group), and have a project for the day (even if it's just cleaning out a few drawers).  Throughout this past year, I never gave up going to work, as that was the only place I felt like I could accomplish something.

Advice from the peanut gallery is to take care of yourself.  Otherwise you won't be worth diddly in trying to care for hubby.

So today you get Hugs and advice from someone who has been living as a survivor for 9 years.

HUGGGGGGGGS,

Donna

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014

Thanks Donna Lee!  I can totally relate to this:    I'm the kind of person who likes to plan stuff, have control of events and happenings...and cancer took that away from me.  I had no control, period

THATS ME!  It also makes me an extra great care-giver.  I don't know if I would really call myself "depressed" needing Anti-D's.  It's more that I'm sad.  BUT That is normal in our circumstances!  I'm on them but I'm willing to get off of them too.  They make you put on weight!  AND that makes me depressed. 

Sorry to hear about your MIL :(

I too love to go into work to get my mind off things.  Luckily my job is being VERY supportive.  I've been here 8 years and put in my time as an over-achiever.  Its time to be a bottom feeder now.  :)

Thanks for the Hugs! RIght back at ya! :)

mrou50
Posts: 389
Joined: Mar 2013

You deserve a big hug.  I know my wife gets so tired of being frustrated, and worried about me since my cancer returned that I don't know how she does it how she keeps going everyday and especially days when I am not feeling well at all.  She has been searching for a cancer caregivers network so she can share her stories and feelings with people that understand.  Keep strong and make sure to take time out for yourself.

 

Mark

JoanneNH
Posts: 115
Joined: Sep 2013

Massive hugs from New Hampshire!

 

Does your husband like peanut butter?  Very little provides a lot of calories.

Allochka's picture
Allochka
Posts: 946
Joined: Nov 2014

warm hugs from Latvia!

you have too many things on your plate. Right now. Can you get a day-off of some kind? Have a good sleep, then a walk, nice lunch somewhere (alone), glass of wine?

perhaps it could help you?

my mom is a caregiver to her older sister right now. She took vacation from work, spends almost all days at sister's place to assist her. She is completely worn out by now. Unfortunately I can't help much, cause I have a 2 month old to take care of. Well, yesterday mom and I went to visit old friends, had great dinner, went for a walk. Mom was super tired prior to this, but after felt much better. Change of atmosphere and pleasant company helped a lot.

Hug, I wish you to treat pink-eye asap and visit your grandkids! They will help to feel joy again. All hard days will pass!

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Another big hug; you certainly deserve it having gone through so much. A day off just for yourself might not be a bad idea. Some insurance companies allow for a visiting nurse for a few hours a week. Mine does. Is that something you could look into just to give you a couple of hours break where you take care of you? It must be so hard on you and then to get pink eye on top of it is the epitome of unfairness. Hoping husband starts eating and puts some weight back. Don't want to be preachy but fast food is not a good thing for kidney with all that salt. Occasionally it's fine just not as a steady diet. Peanut butter is a good idea. I admire you and all care takers. You're our heros too.

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014

Thanks Mark.  U mentioned the word worry. YES the worry struggle is real. There are times when instead of relaxing at home I worry myself to the point of being exhausted.  Thanks for your support.  I will keep you and your wife in my prayers 

Joanne thanks for the peanut butter advise.  He does like that! I spoke to the nutritionist and she recommended that too. Interesting that she also said to keep a lot of easy snacks around to grab like peanut butter crackers.  She wasn't pushing healthy stuff it was more just high calories.  

Allochka

So much wisdom in your post!! I'm a planner and planning fun was a low priority before I read your post.  I promise  I will have drinks with friends in the next 7 days. U can hold me to it and check back with me!!!

Apny

Like i told lochka you can also check back with me in 7 days to hold me accoutable to my promise of having fun

. For some reason the pink eye just makes me laugh. It reminds me of when we were in the er last week. I had a bit of a breakdown. The er lost power then their computers were down. You really can't make this stuff up! 1st I died laughing for a few minutes then I broke down crying.  It's like I had been holding it all together for 16 hours and finally unraveled completely.  Call me crazy but it felt good :)

As far as hubby's diet I agree with you 100%. But even the nutritionist said if he will eat it and can tolerate it,  it's better than the not eating he had been doing for a week. I gotta pick my battles with him. U should have seen his face light up with the new plan. We are just doing it a week and will re-evaluate.  It's like if he was given 5 years to live if he it's healthy and 2 year's to live if he eats bad,  he would choose the 2 years. I'm dealing with a grown man who is losing his independence (hope just temporary) . He can't drive , he struggle to walk, he needs to be able to make some decisions for his own sanity. If I was the cancer patient my diet would be different.  My personality is a control freak so it is really hard for me to let him choose his diet. I appreciate your feedback and friendship.  Sorry you are here. Hugs right back to you! 

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

How about a dose of confidence to go with it?  First, thank you for keeping me in mind. I wish I could share some of my confidence and worry avoidance process. I think that after a long career in health care, including hospice, I don't see death as avoidable. I've watched hundreds of people dieing. Some die afraid, others angry. The ones that most impressed me were the ones who knew their time had come and faced death with confidence. Their acceptance and grace was impressive. I watched the impact on their families. Without a doubt those who were accepting of their demise left their families with wonderful and happy memories. The others mostly remember the sadness and difficult times experienced. The bitterness would eat away at them. They would feel like they failed, the health care system failed, and then carry that baggage letting it drag them down to the ground. They needed so much support but their negativity would drive friends, family and caregivers away. Families separated. Often casting blame on each other instead of being there for each other. So sad. I know that I have a choice as to which group of people I belong with. So therefore the choice is made. Now the job is to make it work.

Being told that I had cancer was like a batter getting one strike. Not the end of the world. More opportunities ahead. Being told there was nothing they could do, was like bottom of the ninth, 2 outs, 2 strikes, and facing a fast ball pitcher with the sun in my eyes. That hit me hard. (good pun). I am not ready to die yet, so in the early stage, that scared the hell out of me.

Luckily I found a doctor who put me in the clinical trial of nivolumab. It wiped out 90% of my tumors over 18 months. That helped so much to reinforce positive thoughts. Unfortunately, I always get new mets, and treatments change. But every day was a gift. I lived that way. Still do.

On to this past winter. All hope was gone. Unable to do anything for myself. All I had to do was close my eyes one last time and let go. It was time. But my years of running gave me the ability to hang on for just a little longer. It is now July. I still have neurological deficits. The votrient isn't too bad except the diarrhea and upset stomach. I am golfing, riding my harley. camping, working around the yard and house. Everyone who knows me is impressed. Including my doctors.

I make an effort to avoid negative thoughts. I spin them into positive thoughts. I whistle happy songs. I compliment others. It is my journey. I don't want to drag others down. I do want my approach to rub off on others. My time is still going to be limited and don't want to squander a minute.

For whatever the reason, I am still here to talk about it. Every day I'm told that I have a great attitude. I've got thngs to do and people to see. I'm on my way to my garage to change my bikes oil and then go for a ride. Maybe to the beach.

Cheatinlil, it isn't over till it's over. It's all about the moment. I know you and your husband can smile about something. Go to that thought. Be thankful for every minute.

FLY. Fox.

Allochka's picture
Allochka
Posts: 946
Joined: Nov 2014

Well, Apny and I will check in a week whether you had fun! Behave! :-)

APny's picture
APny
Posts: 1998
Joined: Mar 2014

LOL, absolutely!

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

consder ryoself hulgged

 

Srashedb
Posts: 482
Joined: Dec 2013

of course, you can have a hug! Being a caregiver is exhausting and there are many periods of stark, naked fear.

am I reading your post accurately? What I mean is, does your husband have mets in other areas in addition to the bones? I ask because my husband's oncologist has told us that the meds do not work on the bones and would not prescribe it ubless and until needed.

so, my husband has had several cyberknife radiation treatments; we have decided to hold off on Xgeva as long as possible. So, he has a full body MRI at the end of August and chest scans.

he has been told to call immediately if he experiences any unusual issues on his back.

you've had a tough time and the stress is hard on your body; so, here's a virtual hug ((((((     )))))))) and now, get over the pink eye and hold those babies. We just returned from a visit with our 11-month-old grandson and although his papa can be a righteous pain, his son was a dose of heaven.

Sarah

PJ44
Posts: 2
Joined: Jul 2015

I'm new here so I don't have much to say yet, but I can certainly send Warm HUGS your way. Smile  Take care of yourself. (I'm in a caregiver situation, too).

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Big hugs to you, Cheatinlil! I think being the caregiver is the hardest job! And we have a lot of fabulous caregivers on this site.

So not only big hugs coming your way, but also a BIG THANK YOU from all us survivors for getting us through this!

Hoping all goes well for you!

BIG HUGS

Jojo

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014

Fox,

My husband is a very positive person.  Sometimes to the point that he is annoying J  So I have that good fortune on my side.  Thursday the dr. asked him how he is doing and he said “good”.  I was like “no he is not!”  LOL!  When the Dr. says he is “stable” he tells people he is “in remission”.  I correct him sometimes but not always.  I don’t know if he is just in denial or really just doesn’t understand.  I read a lot and so I have some knowledge of what this is going to take.  My husband just took a backseat and lets me handle it (since I’m a control freak I don’t mind!).  For me, I just compartmentalize it.  Put it in a box and file it in the back of my brain.  I need to live in reality so I like “best case” scenarios and “worst case” scenarios and averages.  No matter, what the doctor says, my husband only hears the good.  He could list 7 negatives and 1 positive.  My husband leaves excited about the positive appointment we just had.  On Thursday the dr. said his prognosis is an average of 2 years.  It could be a lot longer or could be a lot less.  We have to wait to see his October scans to know more.  That statement hit him like a ton of bricks.  He heard it this time. 

 

Fox, when did you hear this?  “Being told there was nothing they could do”. 

You are making a difference here on this board.  Me and hubby are both in the process of cashing in some 401k money to take trips for when (not if) he starts feeling better.  Thank God we have it!  I don’t know how people can afford all this treatment and time off!

 

Sarah

His mets are: Kidney, abdomen, lung, spleen and T8 vertebra spine.  The T8 vertebra was radiated on 7/2 with single dose of radiation.  They said there is an 85% success rate for the tumor on the vertebrae.  The votrient chemo pills were for the other areas and have kept all other areas “stable” (not shrinking or growing) for a year now.  When they found the one on the spine, they determined they are no longer working.  

Keep me posted on your husbands upcoming scans , Yall will be in my prayers!. Yay for seeing your grandson!

 Thanks footstomper and PJ44 J

My new update:

Me and hubby went to eye dr. Saturday.  We are both not contagious.  We both have eye infections that require the same eye drops.  I went to Walgreens to pick it up and they said they only have one left.  They will order the other one we need.  How weird is that?!  I swear you just can’t make this stuff up!  But, thanks to the dr., I was cleared to see my grandbaby.  I went to visit while the parents went out and I held her for 3 hours!  Yep! That’s what grandmas do J  And that isn’t going to count for my fun time I promised.  I’m meeting a girlfriend for drinks Thursday night! J 

Slow but steady progress since our 7 8 appt.  He is eating much more.  He is awake much more. Up around the house much more. Even went out to eat yesterday. That was his first day out of the house since 6 25 besides dr. Appts. He starts another new med this week and has a shot on 7 24. Please pray he can continue to improve and can tolerate the new treatment.

Thanks for all yalls support!

APny's picture
APny
Posts: 1998
Joined: Mar 2014

So good to hear that your husband is making progress and is up and around, eating more, and going out. You've got prayers for continued progress. And super about seeing your granddaughter, and also that you're going out with your girlfriend. Have a wonderful time!

Allochka's picture
Allochka
Posts: 946
Joined: Nov 2014

Wishing your husband all the best with new meds! 2 year prognosis sounds too pessimistic, there are people here with Stage 4 who do not give up for many years! Just keep fighting.

and great to hear about positive things - seeing granddaughter and plans to hang out! 

I'm sorry, I most probably missed it - how old is your granddaughter?

Srashedb
Posts: 482
Joined: Dec 2013

please don't ever pay attention to those timeframes or as some have called them "expiration " dates.

my husband was told at most a year, maybe not until Christmas in 7/2013. The oncologist based his opinion solely on one MRI.

so glad you were able to spend time with the grandbaby; 3 hours alone sounds great. 

My son is a control freak who believes he is the only one who can take care of our grandson. 

We do get the granddaughters alone now (my other son's girls)

sarah

Dembel
Posts: 32
Joined: Jul 2015

Hey cheatinlil,

Everything you're describing about yourself could be about me :-)

I'm realist, or at least I think I am ;-) I like to plan ahead, and my hubby with RCC is positive to the point of being annoying, only hears the good things the doc says (even if that's about the weather), never any bad things....

I heard from others that patients themselves tend to be more positive (I then like to call it 'less realistic' but I will get punched in the face by others ;-)), I guess it's a survival mode, and it seems to work! So I guess you and I and other "partners of..." can only do that.....be positive.

Easy to write down right!

All the best!

Demi

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014

Thanks JoJo for your encouraging words!

 

Allochka and Srashedb

I know it sounds crazy but hearing the worst case: 2 year prognosis helps me because it is the reason we are cashing in some of our 401k’s now.  We want to travel.  It’s funny but once before my husband wasn’t doing well and I booked a family trip to Vegas.  After I booked it (but before the actual trip) the dr. gave us the great news that he had another patient with similar results that he has been treating 9 years.  I remember thinking Oh God why did we just shell out all that money?  I was suffering from buyers remorse with that trip! J

I don’t want to delay in our trips and building memories.  If he continues strong for 9 more years think of all the great memories we will have from thinking “we don’t’ have much longer, we gotta get out there and live!” 

I really wish we would’ve started his Short Term Disability sooner than we did.  I have a LOT of regret about that.  We turned in our paperwork 6/25 thinking, lets just do it, then we can take trips and enjoy our time.  Then boom, he was bedridden.  That to me was the strangest thing!

My granddaughter is almost 8 weeks old.  My husbands granddaughter is almost 1 year old.  They are the cutest!!!!

Dembel

I’m glad I’m not the only crazy one.  I’m in good company! J

 

Allochka's picture
Allochka
Posts: 946
Joined: Nov 2014

Yes, live life, never postpone it! i think it is applicable to everyone, even without cancer diagnosis. Everyone could be hit by a bus or smth... 2 years ago a roof crashed in a supermarket in our country, killing 50 people. So you never know, better  to enjoy today than wait for tomorrow, which may never come.

But somehow I'm sure after reading these board that even with Stage 4 people live much-much longer. Your husband will see your grandchildren grow and get older than 2-3 years!

 

Our daughter is 9 weeks old now, smiles and coos, so I can imagine what a joy your granddaughter is now! Enjoy, I'm so happy for you! :-)

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