Another Twist in the cancer
 

Still trying to regain my strength...seems it is at a much slower pace than I expected...my incisions are healing, but I am still having a few breathing problems...left lower lobe of my lung is partially collapsed and i have a hemidiaphragm...which may have occured from the surgery.....both make breathing a little struggle at times, and sleeping a pain in the a**....
I also have been having a problem with the left side of my neck swelling.....then after I am up, the swelling lessens but does not go away totally....saw the throat surgeon this week and seems I have developed lymphadema in the neck...rare but not unusual with all the lymph node involvement i have in the area. Now I am sleeping propped up on my back and the swelling is almost nill...just an FYI as i had never heard of this.

Wont know until scans if the Cytoxan and Methotroxate are helping...odd that I get nausea from the Cytoxan...i have never had nausea from any chemo before, so this is a new game.

Time to go strengthen the lungs with my spirometry toy....you are all in my thoughts and prayers even though i have been lax in posting...My son recently lost his home to a tornado here...the house that I raised my own children in, and had been in his Dad's family since 1897...he and his wife and children are safe but devastated....funny how fast our lives change!

Re: Another Twist in the cancer
 

Oh so sorry to hear this. Thank goodness everyone is ok.
hugs and love
sarah

Re: Another Twist in the cancer
 

Hi Sheila. So many twists, over time, in cancer and in life. The neck lymphadenopathy is something I've never heard of either. Thanks for attaching the photos. I still am caring for my parents' place and feel the connections to it, and am glad you have the memories even though I'm sorry to see what happened to it. I can imagine what it must have looked like in the area there at the time it was built originally, and what it would have been like for the first bride who lived there.

The Cytoxan gave me nausea with the 5-FU of CAF, and of course the nausea doesn't help a lot with making sure to drink enough fluid to avoid bladder difficulties. I suspect the difference in strength and slower feeling of recovery might be due to lower blood counts with Cytoxan too, but I don't know?

Hugs,

AlaskaAngel

Re: Another Twist in the cancer
 

Sheila, thank you for lettings us know what is happening. I hope your SEs get back in line with feeling good. You are amazing.

The house pictures are unreal. Hard to believe it stood strong for so long and finally met it's match. Change is so hard.
Much love to you, ma

Re: Another Twist in the cancer
 

Dear Sheila,

I read your post and just kept saying "oh my" - I haven't been here an awhile and came back to check up on my friends and I find you with such devastation in your life and yet I don't detect (still) any bitterness or defeat at all - just some annoyance - and that with humor! You are still so "YOU" and that's why you are still here, still the amazing woman who was one of the first to jump in and help me here when I showed up 5 years ago!

My prayers are with you and your family - keep on moving forward with your usual lovely, amazing self!

Love to you, Donna

Re: Another Twist in the cancer
 

Sheila, I hope you regain your breathing strength real soon. Wow! those pictures remind me of the Wizard of Oz. Glad your family is ok and hope they can fix your family home back to its original beauty.
Kris...

Re: Another Twist in the cancer
 

Damn. When you get a minute, please update your treatment list. I can't remember what surgery you had. Any chance that time of day or proximity to food might influence Cytoxan nausea?

Re: Another Twist in the cancer
 

Sheila,

You are in my thoughts and prayers. Since joining HER2 you have continued to be a strength and inspiration to me.........Take Care and Keep the Faith.

Tami

Re: Another Twist in the cancer
 

You and your family certainly have had your ups and downs. It never rains, but it pours------all at once.
I hope the storms of life calm down, so that all of you will have a more peaceful life someday.
I hope that your body will heal and that all the problems it is dealing with are temporary.
Take good care of yourself. I have my fingers crossed for your improvement.

Re: Another Twist in the cancer
 

Sheila, I had read of your son losing his home through your FB page and was just so relieved they were all okay but what a terrible thing to happen.

I also just wanted to send good thoughts and wishes for a big improvement soon, you're long overdue some better times:)

Re: Another Twist in the cancer
 

I'm stomping my feet in frustration for all you are going through. You are way overdue for a break from health set backs and other life problems. I hope things improve for you soon. Can you arrange for some manual lymph drainage from a therapist for the lymphedema? I think that would be very helpful as well as relaxing massage like experience for you. Take good care of yourself. Pam

Re: Another Twist in the cancer
 

I'm sorry to hear about your son's home but happy that everyone came out ok. Hoping and praying for better days ahead for you and your family.

Marcia

Re: Another Twist in the cancer
 

Hi Shelia, If you hear alot of noise it's because I'm stomping my feet along with Pam. It seems it's one thing after another for you...talk about Murphy's Law! My heart really goes out to you. It's time some good things start coming your way as it's long over do.
So sorry to hear about your breathing problems...I hope they get can get to the bottom of that and give you some relief. When its time for you scans I will be sending positive thoughts for good a report. I will be keeping you in my thoughts and prayers always for better days to come. Hang in there.

Chelee

Re: Another Twist in the cancer
 

Sheila,

Thinking of you and sending lots of hugs and love your way. I am sorry you have to deal with so much.

How very frightful for your son and family, thank God they were not harmed. The house is beautiful and I hope they plan to restore it and continue the family
legacy.

Wishing you a speedy recovery!
Jean

Re: Another Twist in the cancer
 

So sorry to hear of your son’s loss but glad everyone is OK. It seems god has put some natural disaster in every part of the world to shake up our lives.
I too have elevation of my right hemidiaphragm and scarring in the lower lobe caused by the sacrifice of my right phrenic nerve during the open biopsy of my neck. This is when my breathing problems started and there is nothing they can do to permanently fix this issue. The only thing that seems to help is when my pulmonologist puts me on a round of prednisone to reduce inflammation in my lungs. I don’t know if this would help you, but I thought I would mention it.
I think about you, my neck node sister, often and do hope the new cocktail works. Thanks for the information about neck lymphadema. I read recently, maybe even on this site, that they have a new laser treatment for lymphadema. I wonder if this would help you too????

Re: Another Twist in the cancer
 

Sheila,
It sounds like you have been very uncomfortable and going through a lot. Please know that we are thinking of you and wishing for a speed up on feeling better again. I was so sorry to hear the news about the house and grateful that your family is o.k.. Yes, life changes quickly and it doesn't seem to know or care that such changes (even when in the right direction) are stressful for us humans!

Re: Another Twist in the cancer
 

Thanks for the update Shiela, it just seems unfair
but you are a trooper. I hope this mix works because
you deserve time off for good behavior. Hang in there
and take care.
patb

Re: Another Twist in the cancer
 

Oh Sheila...Oy on the house and the twister. Double Oy on the lung and swelling. I'm sending some extra fortitude from my personal and special supply, direct from my heart to yours. Hang in there!!!!
Flori

Re: Another Twist in the cancer
 

Sheila, I'm sending along my wishes for easier times too. Hugs.

Barb A.

Re: Another Twist in the cancer
 

Wow Sheila
sometimes I think you are trying to work your way cover to cover through the medical dictionary! Don't they get it? You are just too ALIVE!
Keep pushing on Sheila and as you know my best advice is always to BREATHE...so do that-ahow that spirometer who's boss!

Much much love my friend
chris

Re: Another Twist in the cancer
 

Sheila,

When I was in Chicago I heard the report on the news about the Tornado that destroyed a lot of homes and I'm sorry to hear that your son's home was devastated. Yes, we never know what's going to happen one day until the next.

I too have an elevated hemidiaphragm, which occurred after my second lung surgery. I'm not sure whether it's from gravity or a damaged nerve, or both. I've had two lung resections, so there's space for the diaphragm to move up since some of my lung is missing. But the condition can also be caused by cutting certain thoracic nerves, like the phrenic nerve (I think), and I have a 10-inch scar down my back on the left side starting at my shoulder blade, from the thoracic surgery. I also had a collapsed lung. They usually bounce back, and I hope yours does soon.

Sending good vibes that you'll be feeling better soon.

xoxo

Joan

Re: Another Twist in the cancer
 

Dear Sheila,

I do hope that your breathing will return to normal very soon. You have gone through so much. It's time for a nice long break!

I am sorry that your son's home was destroyed in the tornado. That is terrible. So happy that he and his family are physically okay though. I hope they can rebuild and make it a happy home again very soon.

Hugs and Prayers,
Lexi

Re: Another Twist in the cancer
 

Dear Sheila,

So sad to hear these horrible news... so sorry.

Love,

Adriana

Re: Another Twist in the cancer
 

sheila, you continue to be in my thoughts and prayers. havent been here for awhile. recovering fro a total shoulder replacement and typing is limited to my left non dominant hand. very long recovery ahead for me...6-12 months.

Re: Another Twist in the cancer
 

Dear Sheila,

I just saw this post - so sorry about the house, and about your breathing troubles. I hope you feel better soon.

And Rina, hope your recovery goes well too.

all the best
caya

Re: Another Twist in the cancer
 

I hope things are better for you and your family Sheila.
Take care.

Re: Another Twist in the cancer
 

Shelia, Not a day goes by I don't think of you. I sure hope your feeling better. Your one tough cookie that's for sure. I'll keep you in my thoughts and prayers.

Chelee

Re: Another Twist in the cancer
 

Sheila, I'm also thinking about you and hope that you are breathing easier. Also thinking about your family.

Barb A.

Re: Another Twist in the cancer
 

Thank you all for your thoughts and prayers...this has taken a toll but I am still trying to increase my lung capacity and inflate the lower lobe...I am back to walking, at a slower pace, but up to 1 mile a day...a long way from a month or 2 ago! The heat makes it difficult, so its all about timing. I completed my first cycle of metronomic chemo, Cytoxan and Methotrexateand do notice some shrinkage of the axillary nodes and neck nodes....I am always a quick responder at the beginning. I am hoping the scans will show the mediastinal nodes and the ones around the pulmonary artery have shrunk! All in hoping that this will keep disease progression at bay until i can get TDM-1....
This has truly been a trying year with my parents, myself and my son....his house was demolished last week, so his wife and him are designing their "new" house. He is off work so he has plenty of time to worry about the what ifs....I have tried to tell him many times, its not easy, but you deal with the hand you are dealt, try to make the best of it, and remain positive.....hard to do, but we have all been there, some of us more than once.
Hoping the next half of the year is more peaceful....you are all in my thoughts and prayers!

Re: Another Twist in the cancer
 

Things have been so rough for you and your family of late Sheila and I'm so sorry about that.

You deserve a break and I hope it comes very soon in the form of good news re your health and recovery. Thanks for updating us as I was wondering how you were. (((hugs)))

Re: Another Twist in the cancer
 

OH Sheila,

I hope you are feeling a lot better these days. You are up to a mile a day!!! That is better than most, no small feat if you ask me!!

I know your son is devastated about their beautiful home, how hard that must be to watch your life being demolished before your very eyes. But how proud they will feel once they get into their new home and know that they designed it!! Not many people get the opportunity to design your own home!! A home made just for them!!

I hope things have started turning around for the better for you and your family.

Re: Another Twist in the cancer
 

Well Shiela , I can certainly relate to getting kicked in the a** a few times. Between my cancer, hubbies bypass surgeries and now waiting for my son to get a kidney and pancreas transplant it seems like it never ends. But as my hubbie say's you kick ass and take names later. Having been thru so much , you learn to tough it out with the grace of God at youre side, Jeanette

Re: Another Twist in the cancer
 

Sheila, I too think about you daily - actually multiple times daily. For sure this has been a heck of a year, and I am humbled by your strength.

Hang in there my friend.

Re: Another Twist in the cancer
 

Hi Sheila
I to feel humbled when I read all you and your family have been through.
Your courage is astounding and your compassion for others so very special.
Ellie

Re: Another Twist in the cancer
 

Sheila - You are also in my thoughts daily, praying that your breathing continues to improve and you'll feel better. My heart goes out to all of you and all the hard things happening in your family. Your strength and stamina are amazing. Pam

Re: Another Twist in the cancer
 

thanks caya. i am keeeping up the pma during the long road of recovery. chemo and radiation were easy compared to this.