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My hubby - need prayers..

Posted by roselvr 6B Lower S.Jersey (My Page) on
Fri, Sep 11, 09 at 10:13

Almost 2 weeks ago, we found out that my hubby has a mass in his neck that is cancerous. Due to the type of cancer that it is, they knew this was not the main mass. Hubby was sent for a body scan, which took close to a week to get read.

After getting the diagnosis, I go on the computer & started doing research on where he should get treatment; and I'm pretty confident that we've picked the right place. After what happened with my dad, I do not want to waste time with my husband.

Waiting for the body scan to get read was hell. We knew this type could be in any of his organs; needless to say, we've both been extremely stressed/worried. When I hear cancer, it brings such fear; I don't know many people that have actually fought and won. If the cancer doesn't get you, the treatment does.

We saw the ENT department head in Philadelphia Wednesday. He said the main source is the right tonsil; so we set up surgery on the 22nd. They will remove both the mass & tonsil, do pathology as well as check lymph nodes. They will also place a feeding tube because he's probably going to need it during treatment.

We don't know much more until surgery & when the pathology/staging comes back. We chose this place because it's very well known, and is set up with everything so that we can do everything in one place, nothing should have to be sent out.

If you pray, please say a prayer for Charlie.

Some of you may remember our wedding at Cypress Gardens in Florida. We had a few people from the rose forum attend.

From Wedding


Follow-Up Postings:

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RE: My hubby - need prayers..

  • Posted by debn 8b NW Florida (My Page) on
    Fri, Sep 11, 09 at 10:25

You surely have my prayers Roselvr!

I want to tell you to never give up hope. Cancer can be fought and the battle won. My Dad was diagnosed with throat cancer when he was 58 years old. The tumor was the size of a grapefruit in his throat. They took his larynx out and so, he could not speak with his normal voice but with a cooperand(sp). But we had NO problem understanding what he was saying.
Daddy also had to have a trachiostomy(sp) to breath through. For many years he ate normally until the scar tissue from radiation ended that and he had a feeding tube put in his side. Daddy ate exactly what we all ate whether it was soup and a sandwich or a rib eye steak...we just blendered his food.
Daddy had to have the radical neck surgery, they removed ALL of the tumor and some lymph nodes. He had 5 lymph nodes involved. But, he only had radiation treatment no chemo and they got ALL the cancer during that one surgery. The cancer never came back, never metastized and he lived another 21 years before a brain anuyrism(sp) took him from us.
Cancer can be beat. Believe that with all your heart and claim your husband beating it!

I will prayer so very hard for you and Charlie. I do remember your wedding. Ya'll are a handsome couple, it was a beautiful wedding from the pictures you posted before.

Hugs and prayers,
Deb Nicewonder


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Roselvr, another post of hope for you. My mom had breast cancer when I was a teenager. That was so long ago that I am as closer to 50 than I care to admit, hint not long. I have known friends who did die from cancer but I have also known friends who beat it cleanly.

I will keep Charlie and you both in my prayers. Be strong and remember we are backing you up.

Lance


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Dear Roselvr,
We will indeed add Charlie to our prayer chain at church for healing, and yourself for peace and calm.

We went through this last summer with our then 6-year old grandson, Gabe, who was diagnosed with lymphoma as a result of PTLD liver transplant complications. He spent 3 months at Childrens Hospital in Chicago undergoing chemo...was never even sick nor even lost his hair or his energy. The cancer is gone and we are so thankful to God and for the doctor's wisdom.

One thing that helped me alot was to take a notebook to the hospital and write down everything that doctors said during their daily rounds...and ask questions if I didn' understand what they were talking about. I'm sure they got tired of my endless questions, but I found you have to take responsibility for your healthcare and become involved. There will be so much information thrown at you by so many doctors that you can't possibly remember it all, so you have to write it down and write down what doctors aaid it and when.

Please keep us updated...I'll be thinking of you and Charlie.

Hugs,
terry


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I was worried when you said you also had some bad news. I am very sorry that it is this, but it does sound to me like you have room for a lot of hope. It also sounds like you have a very good facility for him.

I hope you will keep us posted as the weeks go on.

I wish you and Charlie the very best.

Sammy


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Fri, Sep 11, 09 at 18:15

Deb, thanks so much for telling your story. It helps. How are you doing since losing your mom?

Lance, his mom was diagnosed with breast cancer a year after we lost both of our dad's to cancer. She's been doing well thankfully; and it's one of the things that has gotten me through this last week.

Terry, it rips my heart out to read about kids. I got involved with cancer years ago when I read about a toddler fighting brain cancer. Today he is cancer free; and the treatment his parents chose back then is now standard for that type of cancer.

Sammy, the Dr said he's sees this often & from the look on his face, we now have hope. The original Dr really scared me; I knew it was serious just by his facial expression. I knew we would get a cancer diagnosis.

When my dad was diagnosed, I learned a lot about cancer. I ended up getting a tote bag, a binder, then filled the binder with a plastic business card holder, some photo album sheets plus plastic sheet holders, all paperwork went in the binder. The Cancer Institute loved my idea & started handing out a tote bag with a binder. This new hospital gave us a binder which we'll sit down with tomorrow.

I still have the databases I made for my dad; won't take long to edit it for Charlie.


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  • Posted by debn 8b NW Florida (My Page) on
    Fri, Sep 11, 09 at 18:35

I've thought of you and Charlie all day. Tonight I will shout Charlies name to the heavens when our tribal meeting meets at the camp grounds....I'm Native American! I will ask for the healing light to surround Charlie.

I really hate cancer!

Deb :o))


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My prayers are with you - for healing and strength and serenity as you and Charlie go through this together.


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I read on Annececilia's post that you had concerns about your hubby---
You have been on my mind all day and then when I checked in here today I saw your post.

I will keep you in my thoughts and prayers----

Your wedding picture is so beautiful.

BTW--How is your back ?-----I do hope that is not causing you a lot of pain------

You have been through enough!

Please keep us posted--you have many concerned friends here on the Forum (including me)

Fondly, Florence


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Sue, have had you in my prayers.

Carla


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Thinking of you Sue-----

Florence


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  • Posted by carlota So. Calif. z.10 (My Page) on
    Tue, Sep 15, 09 at 5:09

Dear Sue,
You know that I am keeping you and Charlie in my thoughts. Sending good thoughts your way.
Rosy Hugs,
Carlota


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Sue,
I am sending positive thoughts for Charlie and for you. I am so glad you re-posted that beautiful and joyful photo of your wedding; I now remember that post well. May your strength and love see you two safely through this battle.
((Hugs,))
Anne


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Dear Roselvr,

I am praying for your family. By the grace of God, you will tide through this difficult period in your lives.

Best wishes,

Reem


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Prayers for Charlie, Sue! I hate cancer so much. But there are kinds that folks do very fine with, I promise. My Mom lived nearly 20 years with a very aggressive breast cancer, so even the hideous kinds can give a lot of time. Have hope! If any doc is postitive, that's an awesome sign.

(((Sue and Charlie)))


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Sue, been checking our forum every day for an update. How are things going. Cat


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Dear Sue---thinking of you today-----

Hope things are OK

Florence


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Mon, Sep 21, 09 at 13:17

Thanks everyone for the prayers/thoughts.

We're ready for surgery tomorrow. I organized all the medical paperwork, bought myself a new bag that will hold that and the laptop; have to run out today to mail his advanced directives to one family member and one impartial person. Spent about 2 hours at the bank last week getting 4 copies of the signature page on each signed & notarized so that everyone has an original copy.

We don't expect to run into any problems tomorrow with surgery. They're expecting him to stay overnight.

If I can't get here tomorrow, I'll ask Carla to give an update for me. I didn't try to access GW from their internet connection the last time we were in Philly, I know it wouldn't let me go to facebook.


Florence, no change with my back. Since we have similar pain, you can imagine what I'm feeling. It's not going to be easy; I just hope I'm able to do what needs to be done. I was supposed to go back in the hospital during the summer for the pain pump trial (2nd time) but it didn't happen. I'm kicking myself now because it may have taken some of the spasms away. Right now, it feels like my muscles are being ripped apart; burning, throbbing. Pain meds aren't touching the pain.


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Mon, Sep 21, 09 at 19:04

Have to be in Philly at 5:30am.


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Sue--You will be in my thoughts and prayers---

Maybe you can get someone to put you in a wheelchair to navigate the hospital halls while hubby is there.

I know how bad that pain can be------

Florence


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  • Posted by debn 8b NW Florida (My Page) on
    Wed, Sep 23, 09 at 14:01

Any news yet Sue?
Prayers still being said for both of you.

Deb


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Please add my prayers-----

Florence


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Thu, Sep 24, 09 at 11:19

Sorry, it's been a long 2 days. I thought I'd be able to text or email Carla from the hospital but it didn't happen. I brought the laptop both days but was parked so far I couldn't carry it. Last night I went to get it; once I logged on, the hospital kept disconnecting my connection every 10 minutes.

Surgery started at 7:41am. I was able to stay with him until he went to the OR. The Dr told me to go home; he said sitting in family waiting would be rough on me; it would be a 5 hour surgery with 2 to 3 hour recovery. I'd gotten about 3 hours sleep the night before & was exhausted. Char also wanted me to go home, told me to take a nap; so I made the decision to leave which I regretted.

After the Dr called, I gave it 1 1/2 hours then went. I was sent to family waiting where there were no updates. The room was huge & packed. I sat there going out of my mind for 30 mins then was called to recovery. The nurse then tried kicking me out a few times; thankfully I didn't go, the Dr & his team came in. I left after that, they were going to move him to his room.

I then made sure he was as comfortable as could be, stayed a few hours & made the drive home. I don't recall if I even ate my TV dinner, woke up on the couch at some point sitting up freezing. Glad I set the alarm as I wouldn't have gotten up yesterday.

He texted me yesterday morning so we were able to communicate. I ended up getting there at noon, didn't think he'd go home. After walking & eating he felt somewhat better, started looking better as the day went on. At some point they were not going to discharge him; we saw one of the Drs, that got the ball rolling. We got home about 8:30; had to fill his script.

What they gave for pain isn't working so the Dr is going to get back to me; probably going to have to drive back to Philly to get the script :(

The Dr ended up taking the right tonsil, the neck mass as well as lymph nodes. We won't know more till Monday. He said that cancer was also in lymph nodes.


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  • Posted by debn 8b NW Florida (My Page) on
    Thu, Sep 24, 09 at 16:44

Oh gosh Sue, what a long awful 2 days for you!! Your poor back...I remember sitting in those God awful hospital chairs for hours on end....waiting.

I hope Charlie can get good pain pills. Controlling the pain is so important. Just waiting for the biopsy reports is agony.

Just know we are here for you and Charlie!!!
Prayers still flying high for you and Charlie!

Love,
Deb


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  • Posted by hoovb z9 Southern CA (My Page) on
    Fri, Sep 25, 09 at 17:44

Thoughts and prayers for a good outcome. Stay strong.


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Sue-----You are in my thoughts and prayers-----Horrible couple of days for you--

I know how painful those hospital waiting rooms can be--
they sure don't have comfortable places for families to wait ----

Lots of prayers for the outcome of the tests---

Hope you can get some rest.-

Love ,Florence


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Sat, Sep 26, 09 at 9:59

Thanks ladies. I appreciate the support. Nice to see old timers (I'm one myself lol) coming back, posting.

I did end up driving back to Philly; what they gave him was better. Made a huge difference.

Today is my sons 24th birthday. With everything going on, time slipped by me. He's such a great, easy going guy. If all I could do was say happy birthday to him today, he'd be fine with it. Have to get off of my butt to get a card & plan dinner.

Hopefully Monday will go well. I'm actually pretty calm compared to what I've been.

Deb, I do remember that you are Native American. When my dad was fighting, a friend of mine, Whitecree from Canada used to do the same.


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Sue---Hope you can relax a little today------I'm sure your son will understand about all your problems----
Why don't you just get some "take-out"--much easier on the back---Pizza always goes over very well here--LOL

Thinking of you and Charlie


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Thanks for the update Sue. I am going to link this back to my forum, since people there have been asking. I pray, you get good reports on Monday when they get back to you. Cat


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Sue, I've been thinking of you and your hubby today and finally got a chance to log in and check on your updates. I'll be hoping you get good news on Monday and the weekend is restful for both of you.


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Sun, Sep 27, 09 at 9:40

I have the best son in the world.. he was happy with dinner last night, cake today.

His meal was breaded & fried pork chops. We're going to have company today.. his 2 friends are coming down with their 2 1/2 year old; the father's birthday is today; so I'll save the cake for both. Going to order pizza, great idea.

My son's friends have been wonderful this week; I'm close to the girl, love her like my own daughter. Their son is the apple of our eyes; our adopted grandson, so it will be nice. Hopefully Charlie can handle not running around with the boy. lol

Hopefully my son can go to our old town to pick them up. The guy doesn't drive, the girl does. She got hit in the drivers side door back in April & hasn't heard anything from insurance on whether they will give her anything for the car.

Cat, glad that you posted. I checked a few days ago to see if there was a reply email and there wasn't. I'm subscribed so I have no clue why it didn't come.

He was able to take a walk yesterday; mornings are still rough, as are nights. I'm hoping my Dr called in my sleeping pill; my scripts got messed up when he went on vacation last month. Tylenol PM isn't cutting it, have one sleeping pill left. Normally my Dr is great, not sure why it hasn't been taken care of when I called the refill in Monday.


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Sue---the birthday dinner sounds delicious----Hope you and Charlie have a good day today.

---Thinking of you,

Take Care

Florence


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  • Posted by debn 8b NW Florida (My Page) on
    Sun, Sep 27, 09 at 14:56

Sue that birthday supper sounds soooo good! It is so nice to have a support system like you have. That can mean a lot when you get bogged down in things.

I'm so happy to hear Charlie is getting along okay. Tell him to take it slow, we want him to heal up!

And darling Sue....how are YOU doing? I hope you are taking care of yourself too. Don't over do things, if something can't get done, then leave it for the next day! Be good to yourself too!

Love you,
Deb


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It may be hard to find time if only a few minutes for yourself & I'm hoping you are able to. It's helped me in the 17 year saga of my own partners ongoing illnesses and hospitalizations.


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Mon, Sep 28, 09 at 13:56

Just got home, 1st post I'm updating..
As Carla posted asking for prayers..
Thank you Carla..

we saw the Dr today, looks like chemo and radiation :(
The Dr said there was branching of the cancer, so it's stage 4. We pretty much knew that due to there being 3 sites.

We see the cancer center on the 12th and 22nd.
The ENT Dr will meet with them this Wednesday and go over everything.

We had a good visit yesterday. His son has offered help; hopefully he will be able to give it.
It was nice seeing Crystal, Ryan & Aiden; made us forget about everything for a bit.
Little Aiden was so cute telling pop pop to chase him. lol

I'm going to look into pain management as well as call the family Dr once I'm able to stand after my coffee. lol

Florence, thank you.
Deb, I just wish Crystal was closer; but she's a phone call away as are a few others that can't be here so at least I have people to vent to.

Joe, you are so very right about taking time. Since hub's cancer is different then dad's, I'm not sure of exactly what we're in for with chemo & radiation but have an idea. My dad did everything while hospitalized which was hard on me having to be there every day.


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Sue, I hope things are going well. I am praying for Charlie to do well in treatment. There are so many stories of good outcomes that I would never write off any treatment.

Lance


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I've also heard positive stories about recovery--

We are all praying for you at this difficult time.

Florence


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Sue, I had an extended conversation with Bob Edberg (author of The Encyclopedia of Roses) the other day about a Heritage Roses Northwest member who is dying of bone cancer. Bob is a survivor of cancer and attributes his good health today to a South American rainforest medicinal plant called graviola. He uses it as a tea. I've looked it up online and it sounds like something you might want to consider, particularly since you're dealing with stage 4 cancer. I haven't used it myself but I place a lot of trust in Bob's opinions and as he says, what's a little tea 3 or 4 times a day when you're facing death? If it could help... Bob's cancer has disappeared since using it and never recurred.

Best thoughts coming to you from me,
Sue


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Oh my goodness, so sad to read your post and not be able to do anything to help. Hopefully prayers and cyberhugs from an old rose friend might make you smile for a moment.

New cancer treatments are found almost daily, so never give up hope. Everyday that your hubby survives is another day with hope for a cure.

God bless.

Valerie


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Sat, Oct 10, 09 at 16:10

Sorry I haven't been back sooner. Thank you for the posts.

I'm not nuts about the oncologist we saw; so I've been busy trying to figure out if we are staying there or not. They gave us the clinical trial info, so I've been trying to look more into those to see who else is doing what. He's not sure he wants to do one.

We saw the radiation oncologist yesterday and liked that team very much. They answered the questions the oncologist didn't. Some of the test results weren't back when we saw oncology; so yesterday's appointment was very helpful.

Hubby found a family Dr, she's younger then us and very nice. She has no problem prescribing in an emergency and also gave him something to sleep which didn't work last night. She's hoping that taking the sleeping pill for a week will reset his sleep patterns.

The radiation team wanted him to see his dentist to make sure his teeth are in good shape. My daughter had an appointment for the dentist today, so I switched it, gave that one to my hubby and rescheduled hers. They did a mold of his teeth for a fluoride tray and will have it back in a week.

He's going to do 5 days a week of radiation for 6 to 7 weeks. They are doing both sides of the neck. It will start the last Monday of the month.

The radiation Dr said that his chances are good. They can only give a 3 year survival; he said 80-85%. He wondered why our original appointment wasn't until 2 weeks later. I explained how it was set up after my hubby's PET scan and before we had the surgery date, he was glad I called to reschedule it sooner. We will go back to Philly next week, he will get fitted for a radiation mask; meet with oncology & clinical trial and let us know exactly what the plan is. There was a chance his chemo drug would change.

Chalk his cancer up to HPV, the test was positive, which was in his favor; surprising enough.


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  • Posted by debn 8b NW Florida (My Page) on
    Sat, Oct 10, 09 at 20:07

Sue, what is HPV? I should know but for the life of me I can't think of it. And does the radiation mask do? I've seen them on TV but don't know why they wear them. I don't think Daddy had to wear one of those. I remember the blue lines they drew on his neck and throat.

I was so glad to see your post. I am still prayering might hard for Charlie and yourself!

Deb


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Sun, Oct 11, 09 at 13:31

Deb, HPV is the Human Papilloma Virus. You see commercials on TV for Gardasil vaccine for girls your daughters age. I have a teen daughter & chose not to vaccinate because of side affects.

The radiation "mask" is like a mesh web, it will mold to his face & shoulders to keep his body still while the radiation machine is working.

Thank you for the prayers. While his prognosis is good, the fear is that something else will hit him while doing treatment. The chemo will make his blood cell count go down which in turn will make his immune system non-existent.


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  • Posted by debn 8b NW Florida (My Page) on
    Sun, Oct 11, 09 at 14:28

Thanks Sue for explaining that. My daughter Jessica had the vaccine and honestly, she didn't have the first side effect from it. Just a little tenderness at the shot site.
Daddy probably did have one of those masks because he had if I remember correctly 42 radiation treatments.
I'll continue to have only good healing thoughts for Charlie and ask the spirits to embrass him as he goes through this treatment.
And take care of yourself too darling Sue! Don't let yourself become run down...be good to YOU!
Love,
Deb


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Sue, I know the treatments will be rough, but I wish Charlie strength and luck, and a return to good health.
Hugs to you,
Anne


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  • Posted by hoovb z9 Southern CA (My Page) on
    Wed, Oct 14, 09 at 18:55

Continuing good wishes to you, Charlie, and your family.


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Sue--just checking in to see how you are doing-----I've been worried about you.

Florence


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Fri, Nov 6, 09 at 16:58

It's been a rough few weeks. After the surgery & healing he was feeling better and probably could have gone to work for a week but couldn't due to the disability paperwork.

It was a lot of stressful waiting to see if he was going to do a clinical trial; a drug I wished he'd get but the computer ended up putting him in the group that didn't get the drug :( The drug has been used on other cancers with good results but it wasn't meant to be & I'm sure there was a reason. He originally did not want to do the trial but changed his mind at the last minute. I know that things happen for a reason & feel that his dad who passed after my dad probably had something to do with it.

We found out Friday about the trial; lady emailed me and told me they would set his chemo & radiation Monday when he went. I let him go alone Monday because me being there with him is making him feel like he's "sick". When he went Monday he found out he'd get admitted on Wednesday. Tuesday came, the gal I email told me that they were having insurance issues and we might not have a time until the next morning. At 8am she called and said to be there by 10:30.

He was admitted, given a room then told he'd also have radiation that day (which we didn't know). I ended up leaving right before they took him for radiation. Mass transit was on strike & if I didn't leave I'd be stuck in traffic all night since most people had to drive into the city. After radiation he had lots of pre-chemo meds through the IV; chemo at 8pm which took 2 hours. Of course he didn't sleep much that night due to all the liquids they gave him.

We timed his release so that I was pulling up when he walked out. We did this because he was feeling ok & I'm trying to give him a little space. The parking charge is also outrageous; why pay $10 to run in and get him?

So, he had to go back in today for radiation and a taste bud study; he was up to driving there so he drove in; I then went back home and picked him up a few hours later when he was done. He's exhausted & has been sleeping since we got home.

Thankfully we don't have to go back to Philly until Monday which his son will take him; my daughter has a Dr appointment I have to be there for. Tuesday will be a long day. In addition to radiation he has the oncologist.

The next chemo will be November 25, another over night stay with the last being December 16th. Thankfully he's only having 3 chemo treatments but there are large doses.


Please say a prayer for my neighbors mother in law. I found out a few weeks ago that she was diagnosed with Lung Cancer; and found out yesterday that they want to remove her lung. I feel helpless. She's not in NJ, I can't give her advice on where she should go.


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Oh my goodness------what a terrible time you are having----

It is a shame you can't have these treatments in a hospital closer to you---
I think it is a disgrace to have to pay for parking at a hospital----they just stopped charging at Mercer Hospital in Trenton----

sure hope things will soon get better for you and DH.

You are in my thoughts and prayers.

Fondly, Florence


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  • Posted by debn 8b NW Florida (My Page) on
    Sun, Nov 22, 09 at 18:09

Hi Sue,
How are things going now? I sure hope things are getting better. Just wanted you to know that ya'll are still in my thoughts and prayers!

Deb


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Thu, Dec 3, 09 at 17:16

We had our Thanksgiving 11/15. I made the decision to do it early because I knew his next chemo was scheduled for 11/25 with discharge on Thanksgiving day. We knew we were going to have it the 15th or 22nd. His mother was going to fly out for the 22nd.

He'd gone to see the radiation Dr Thursday 11/12; he said the mouth sores were at stage 1. Had I waited, his mouth would be so torn up, he may not be able to eat. His mother changed her flight (coming 12/8). By the 18th he could barely swallow when he got up; ended up going downhill from there.

I'd covered my butt the 18th & got him a "Magic mouthwash" script; he ended up using it. The day after I asked for a liquid pain med script; ended up running around for 2 hours trying to find a pharmacy that had it. I ended up having to forfeit the script; they didn't have enough to fill 30 days only 12. Thankfully I took the 12 because he ended up needing it by the time I got home. The next morning, I was in the garage when I heard him get sick for the 1st time in 10 years that we were together. He took some liquid pain meds; was using the feeding tube when he got sick.

They ended up giving him another IV that day; nothing appeared wrong so he had his radiation & we went home. By the next day he could barely drink. I told him either he tries to on his own or they will admit him. He managed to drink 2 bottles of water each day. When we went Monday 11/23 his mouth was so bad that he packed a bag because he knew he probably wasn't coming home & he didn't.

On the way in he was very discouraged; I let them know when we got to radiation. The Dr came right down & said he had a fungal infection in his mouth, his feeding tube was infected as well. He called the oncologist to discuss admission; we walked the block over to there. She gave him a choice of getting an IV & going home with a few prescriptions or getting admitted. I spoke up; said I wasn't bringing him home. The feeding tube had a huge growth on it. We'd seen the general surgeon a few days before; he tried to cauterize it. The silver nitrate dripped around the opening; burning his stomach.

He was admitted until Thanksgiving day; this has set him back at least a week with chemo. Thankfully radiation was still able to happen. While he was admitted they gave him morphine which did not help until the next day as well as 2 antibiotics. I was not able to be there the next day due to my back appointment so I called the nurse the next morning asking her to get the general surgeon up (he was on vacation, we knew this) and that I wanted a culture of the tube as well as an ultrasound & CAT Scan. She passed the info on. I called later on and while the GS had stopped by, they did nothing.

Apparently they tested his blood for infection - none. They figured that if they gave him 3 types of antibiotics, it would wipe out whatever was "growing". When I got there Wednesday it was later then I'd wanted to get there; I had issues getting my own scripts filled. I immediately cleaned his feeding tube hole; called the nurse in to look at it. She called the oncologist who came right up. The oncologist did not like the look of the growth & how red his stomach was; she called general surgery back up.

He was not supposed to get radiation that day because he was neutropenic Tuesday night- the infection was so bad that his body was not winning the fight against it. At some point they redid the blood and decided to send him to radiation. While there I had the radiation oncologist look at his feeding tube; he called the oncologist to make sure it was going to get taken care of.

When we got back from radiation the general surgeons had already come & told the nurse to use the silver nitrate on it. After making some phone calls to another floor she decided she was not doing it; especially since they never actually looked at his infection/growth. When the nurse asked them to come back in an hour, they refused. During this, I was calling our general surgeons office to try to get help; the nurse also tried with no luck.

I gave up & went home because hubby was out of it from the morphine. He did so good while I was there, did not push the button for a morphine dose until we were at radiation where one of the nurses handed him the button & told him to push it. He did without realizing what he did & it was too late. lol

On my way out I stopped at radiation again to let them know what happened with general surgery. I was exhausted when I got home but some how managed to think to call the nurses station to tell the night nurse not to let anyone "burn" his growth off. I was told to call back in 30 minutes & by the time I did the general surgeon had come in; not exactly sure if it was the one on call or the one from his Dr's office; but they had already burned it off.

Thanksgiving morning was the pits. I emailed someone I know from another forum & sent her a photo of the feeding tube growth just to make sure I wasn't overreacting; she said no. Her dad had a similar cancer so she's been there. She told me to insist they make sure he doesn't have another cancer growth starting in his stomach. What stunk is 3 people offered to go with me & I couldn't take anyone because of his ANC levels. I was afraid to bring anyone near him.

As I was leaving, hubby texted me to say he was being discharged. I was fuming. How do they discharge someone with a huge infection in their stomach; it was so bad he couldn't get more then 1 syringe of canned food in him; plus he'd started throwing up. He also was not weaned from the morphine.

I got off on the wrong foot with his main nurse. Apparently she did not like my concern for my hubby and copped an attitude. She wanted to give him a pain patch; I wanted to see the oncologist, general surgeon and how much pain he was actually in without medications. The oncologist came up & answered all of my questions, told me he was going to throw up from coming off of the morphine.. nice. Hubby made the decision to go home.

It was a long night; the next morning he threw up his meds. I realized we couldn't use the liquid pain killer; then ended up finding out that he wouldn't throw up as long as we kept percocet (crushed & through the tube) in his system every 6 hours. By Sunday night he was able to start "eating" pureed food. Monday he was able to "eat" twice.

Yesterday they admitted him for his 2nd chemo & has been doing well. He's been sleeping since we got home but was actually able to eat food through his mouth this morning. Nothing is tasting right; so with what has happened this last week, he's lost about 6 pounds which he couldn't afford to lose. The radiation Dr wants him to eat by mouth so that his muscles don't get ruined; I think that by this weekend he'll be able to eat on his own.

What ticks me off is that the feeding tube infection isn't being considered anything more then a chemo complication because it affects the body's way of fighting infection.

It's going to be a long 7 to 14 days while we see what this dose of chemo will do to him if anything. They ended up cutting the dose down due to the infection so I'm not sure if that will mean he will have more then 3.


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  • Posted by debn 8b NW Florida (My Page) on
    Fri, Dec 4, 09 at 21:30

OMG Sue...ya'll have just had the worst time. I'm so sorry, wish I could be there to help!
I want you to know I am still saying prayers for you and Charlie. I can't believe all the crap you are having to put up with.

(((((Sue and Charlie)))))

Deb


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Sue, it breaks my heart to hear of the pain, stress and worry you and Charlie are going through. You're being the best patient advocate you can be - don't let your guard down; Charlie needs you more than ever before now. I can imagine you're both feeling absolutely exhausted. Hugs and prayers for the two of you,
Anne


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Oh Sue--this is horrendous------It makes me feel so helpless to read all you are going through and we can't help----

try to stay strong which I know is not easy with your back problems---

Thanks for keepimg us posted

Many prayers for you and Charlie.

Florence


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Holding good thoughts for all of you -- keep us posted when you are able.


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Sending you strength and endurance prayers. You are doing so well with all that's on your plate. I wish there were a way to share the burden with all of us, spread it out and give you a rest. You're a champion!

Sue


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Roselvr, I hope all is going well for your husband and yourself.
My partner has been home 6 weeks almost since having 6 weeks of Radiation, plus 2 weeks of Chemotheraoy during that time. In two days he has a scan and then two days after that we see the big Chemotherapy doctor to see how the traetment has helped.


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RE: My hubby - need prayers..

  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Sun, Dec 13, 09 at 10:49

Rosemeadow - good luck to your partner. Has theirs been as bad as ours?

I've had a busy few weeks. Glad I was able to write as much as I did last time. I had it all in my phone's calendar; plugged my cell into my computer and lost most of the dates. lol

He's had a very rough time since the infection; we saw the Dr Friday; he said that it should go uphill from here. It hit me that had he not gotten admitted that Monday; he could have been very sick. The fear of losing someone during treatment is very real. Thankfully he was admitted and the antibiotic started; he did not have to go more then 1 day or so without an immune system.

He's lost about 13 pounds, which he couldn't afford to lose to begin with. His feeding tube is a huge source of pain. His stomach (inside) always hurts.

His neck is badly burned from radiation. I highly doubt they will give him any more radiation until it heals. The Dr said Friday that if it didn't it would have to stop. He's been in pain from the burns.

His mom was here from Tuesday night until Thursday morning. She was able to see how bad he's been; and now understands why I haven't called anyone; due to lack of time. I haven't had time to eat; her being here forced me to cook for 2 days. His son who hasn't answered my texts since that Monday/Tuesday he was admitted showed up on Friday & ended up coming with us.

Not sure what today will be like with him. I need to get out and try to buy my son a TV for Christmas. If he's going to have a bad day, I'm not going to be able to go & will try to decorate the tree a little more.


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Roselvr, I hope you got out to buy the television.
My partner was diagnosed with inoperative Lung Cancer,
so they did agressive Chemo and Radiation. There was a mass strangling one of his blood vessels going to his heart.
He still hurts around his chest, is dissy at times, a few of his teeth are loose which is worrying him alot but he wouldn't go see a doctor till we go on Thursday. When he first come home he slept alot, had trouble drinking, eating and having medication, also hurt to talk alot. Was off ballanced on his feet sometimes. Wears his cap even inside, seems to help him stay balanced. He can't handle too many things going on at once.
I love him but gee we have argued alot since he has been home. We argued before he got his treatment too, about my two girls mostly, and also how I waste money, time and water on too many roses. But then he had Cancer and we didn't know it, so that would have been getting him down . I shouldn't argue but but I do. I am not a very good carer. Maybe if I wasn't a rose addict I would be a better partner and more loving and giving - but I am not going to give them up so I will give what I can.


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RE: My hubby - need prayers..

  • Posted by debn 8b NW Florida (My Page) on
    Tue, Dec 15, 09 at 20:45

Dear Sue, how I would give anything to just give you a big strong hug! I know how stressed you are about all this mess. Daddy's throat and neck was so burned from radiation he had trouble putting that little crocheted bib thingy over his trach hole. I remember Daddy talking about how that feeding tube hurt, inside and out. We were so anxious over him all the time, really, we spoiled him rotten but that was okay...he was OURS! I loved Daddy so very much and miss him very much.
I do hope that Charlie begins to strengthen up and starts to feel better. It is a good thing his Mom sees how much you have to do now. Does she not help any?

Love to you dear friend,
Deb


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RE: My hubby - need prayers..

Its good news so far about my partner's lung cancer. The CT showed it had shivelled up and looking how it should if things are going the way they should. He still gets head spins from bending over and some other things, but this is all normal for now. He has to have a X-Ray in 4 months and a CT scan in 8 months.
I hope things are going well for you too Roselvr.
Merry Christmas and a Happy New Year !


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RE: My hubby - need prayers..

  • Posted by debn 8b NW Florida (My Page) on
    Fri, Dec 25, 09 at 17:34

RoseMeadow that is WONDERFUL news!!! Just makes me so happy to hear he is doing well. Hope the head spins stop soon. Shoot...I get dizzy headed if I bend over to fast!

Surely 2010 will be a much better year than 2009 was...surely it will!

Merry Christmas everyone!

Deb


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Thankyou Deb for being so happy for Ray, and for me.
We have also just had 100mls of rain which will make Summer much easier and more pleasant. Gad bless you !


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RE: Thankyou !.

Thankyou Deb for being so happy for Ray, and for me.
We have also just had 100mls of rain which will make Summer much easier and more pleasant. Gad bless you !


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RE: My hubby - need prayers..

  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Sun, Mar 14, 10 at 13:55

Rosemeadow, how is he doing?
How are you doing? I actually did pretty well emotionally until January which is why I haven't updated. It's been a long few months but I'm getting better emotionally.

Want to give an long over do update..

Hubby's last treatment (chemo & radiation) were 12/23. He was supposed to finish radiation 2 days sooner but had complications with neck burns; they had to get his pain under control. I asked the radiation oncologist for the morphine pops again; this time he gave it to us but it was a 3 day wait for it to get ordered. I'd called pharmacies in both NJ & Philly; no one stocked it, not even hospitals. He ended up using a Fentynol patch for a few days; he was only able to wear it for a few hours as the Fentynol made him sick. They are supposed to be a 24 hour patch. The pain problem was a dry neck - he couldn't have the antibiotic cream on his neck for radiation because he'd fry; which meant he had to go from the shower, we'd wrap his neck in wet gauze & baby wash cloths plus an ace bandage then he'd unwrap when we crossed the bridge. He lost over 20 pounds, which he couldn't afford to lose anything.

Healing was very hard on him. He did so well at 1st but his autoimmune kicked in about 2 weeks out to where his blood counts were really low. I ended up taking him to a natural Dr where he had supplements & a vitamin C drip which seemed to work; unfortunately, he needed 2 drips per week but we couldn't fit 2 into our life (it was an all day thing with ride plus waiting for the bag to drip) plus he did not like the way the girls stuck him or pulled the IV out. His body was still sore from all the needles in Philly, he didn't need more pain. Yes, we complained...

He got very depressed because he wasn't healing quick enough. I could not get his mood changed. Different antidepressants were tried but nothing worked.

What ended up working was our old neighbors came up from Tennessee on Valentines day (he didn't know); so that cheered him. Then we made the decision to have the feeding tube removed. The feeding tube was a huge source of pain; his intestines always hurt; he was usually found doubled up in pain. It was thought he had gas but from what I researched it could have been spasms.

Any puree's that I made, he basically shut down & wouldn't eat them, nor would he eat by mouth because he had no taste buds and no saliva. To someone that likes to eat, this is very depressing. He'd tell me that the puree would sit in his stomach & not digest.

We saw the radiation nurse practitioner and I was able to speak to her alone.. she backed me up that the tube needed to come out & that he needed to be able to sink or swim. Had he not started eating, they would either feed him via nose or another feeding tube. On 2/22 we saw the ENT surgeon & lied about how much he was eating by mouth; they pulled the feeding tube out.. yes, held a towel over it and yanked & out it came. 5 months after it was put in, it was taken out & he's been doing well eating.

His taste buds are better; he's not complaining about the saliva as he knows he's going to have to drink water with almost every bite just to swallow it. Most food will suck up his saliva like a sponge.

We knew our health insurance was going to get canceled & it did. He was going to start physical therapy 2 weeks ago when they called to say it was denied for lack of coverage. We've been on this since December, asking for Cobra forms but they never came. Thankfully I know the rep; he told me when it was sent out & when it did not arrive the following Monday & Tuesday (last week) hubby & I made the 2 hour drive to Port Newark to do it in person. We split the driving because neither of us drive that far.

The insurance cost us a pretty penny until we are approved; then they will either refund the money, if hubby gets back to work before we use up our large payment or they will deduct the lower amount from my large payment until he does work.

He had a PET scan on 2/4 - we were not supposed to get the results until the following week but the nurse practitioner called us the same day because she knew how depressed he was. He told me a week or 2 before the scan that he was not fighting any more nor was he doing this again if treatment did not work; so I was a basket case as well; especially since it was right before my dad's 4 year anniversary of being gone because of cancer.

Had we not had my inheritance from my dad I don't know what we would have done to survive. We were very fortunate that we did move to where we are so he had better treatment options. After making the drive to North Jersey the other day, there was no way he could get treated at my original choice, where my dad had treatment; but he was able to get treated at a very large place; which I'm not sure he would have chosen had we still lived in the old house. So, everything has worked out.

The next scan will be in 5 months; so we'll see. I'm not sure when he'll be able to get back into his truck to deliver cars; but hopefully he'll be able to do the yard van to drive drivers to their cars. Hopefully physical therapy will help.


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Dear Sue-----just reading about the terrible ordeal you have been going through-----My thoughts and prayers are with you----

It is difficult to know the right thing to do in a case like this but hopefully things will be getting better.

Fondly, Florence


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We've been through cancer, but without all the complications you're dealing with. No fun, in either case, but I survived and am okay.

I'll hold the good thought for your husband, and for you. Take care.


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Sue, I check back often to see if you have posted an update. My thoughts and prayers are with you and your husband - best wishes for a healthy happy future soon! You certainly deserve it after all you have been through. Here's wishing a much better spring.


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Dealing with health problems is stressful and depressing enough without all the insurance garbage and uncooperative doctors, or doctors that do not agree with you. I hope Charlie's outlook will improve and his scan will be clean.

Carla


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  • Posted by debn 8b NW Florida (My Page) on
    Sat, Mar 27, 10 at 18:03

Sue, just reading what you wrote brings back memories of my Dad. He had throat cancer but had the same problems your Charlie has had swallowing. Neck burns from radiation, no saliva...sore throat on the inside...Daddy had it all too. He had to learn how to swallow all over again.
I am hoping so hard that Charlie has this whooped! He has fought a long hard battle and you also. I thought of ya'll often and will continue to pray every day for you and Charlie.

Love,
Deb


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Mon, May 10, 10 at 9:35

Thanks guys.. sorry, it's been another long few months.
It's nice to read when people survive this. There are people on a cancer board I go to that have been clean for 5 years; so I'm hopeful.

Carla, it would be less stressful if some people would get my hint that they need to repay their loans. We lent 2 family members money; and no matter what update I give; neither has offered to start paying their loans back. That's on our to do list this next week; figuring out who still owes us what. If I'm right, it's about $3,000.

Deb, how are you doing? From what I remember of your dad; I think he had it worst due to when he was treated. Radiation is not as harsh as it used to be.

My teen has been having mouth issues; she had 4 impacted wisdom teeth. 2 were removed in October before we started his treatment, another was done in late February; that one was the pits. It was top right wisdom tooth; her jaw was so painful she could barely open it for a long time. I ended up finding another oral surgeon who managed to get her jaw to open enough so that she could have tooth 4 pulled on 4/1. Poor kid then had issues again due to tooth 3; and finally in the last 2 weeks she's healing.

He went back to work 4/13 - light duty, driving a yard van at the port. He drives the truckers around to pick up their new cars (Mazdas) so they can load them on their car carriers. He's been getting up at 2am; going to sleep about 8pm - 5 days a week. He had to take his truck to the shop; once it was done he drove it to the port to get the trailer worked on. They couldn't keep his truck running so he had to bring it to someone else to get fixed. He picked everything up last week; finished out the week in the yard van & today is back to the life of a trucker. I don't know if he'll be able to handle it & I'm going to worry all day.

As most of you know; truckers that deliver cars have to drive the cars up on the trailer; then walk back down. Delivering, he has to walk up & drive down. I hope he is able to do this. He fell a few years ago from the top deck (as did another guy) so I worry.

He's looking pretty good. He's had pain issues from sitting around so long and now using his body. He still suffers with lack of saliva; and his throat. I think the things that saved him with swallowing was him being stubborn during treatment. Most people put water through the feeding tube because it's painful to swallow; he hated doing that because he'd have to pee too much. You wouldn't believe the amount of people that have swallowing issues; have to have their throat opened.. he is very fortunate. He's also fortunate that he doesn't have pain where his neck dissection was; but it's still early to tell. The Dr said that how ever he is at the 1 year mark is a good indication of how he will be; that's 4 more months.

He has a CT scan of the neck within the next few weeks. I don't know why they are doing a CT instead of a PET scan. I also don't know why they are only doing the neck; because IMO, they should do lungs too. From what I've read, the lungs are where it most likely goes next. I'm nervous because I've read a lot of posts from others with his cancer; around this time is when stuff would pop up.

A few weeks ago we started getting large bills.. apparently at some point his insurance got maxed out. I've been pretty calm about it; he, not so much. For some reason they are not covering about $500 of the original ENT's bill from August; which should have been paid 1st. Then there are multiple things at Jefferson; from the hospital, oncologist, ENT & radiation. I'm in the process of sifting through insurance papers verses bills coming in. If I need to apply for charity care, I need to do it asap. He also found out that we will need to be a trailer by September; of course I worry who will give us a loan for that kind of money when he hasn't worked in 7 months.

All in all, I would not change my decision to treat there. His life & outcome are worth more then what ever debt we will have. So far he's doing well; and hopefully will continue to do so. I hope by this time next year it's just a bad memory.

Happy mothers day. Hope everyone is enjoying their roses! My garden is starting to bloom & I'm trying to enjoy it. I'm not sure how long we will be able to keep this house; it all depends on what shape he will be left in. IF he can't drive the truck we'll have to consider selling.

Pics of the garden.. taken with my blackberry. I haven't had time to upload from the new (bought last year) Nikon D 5000. I miss having a digital, not sure I like this camera.

Garden2010


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  • Posted by debn 8b NW Florida (My Page) on
    Mon, May 10, 10 at 16:49

Sue, I was so happy to hear from you! About the cancer spreading..like to the lungs..Daddy was told that too. But he stayed clean of cancer to his dying day. Daddy did not die from cancer or anything connected to his cancer or radiation. I will only have happy healing thoughts and prayers for your husband. His margins were clean, so that is wonderful!

About the relatives not paying back their loans? I'd go to them, tell them you need that money now! I can't imagine loaning money to someone and then going through what you have...them knowing what you and Charlie are going through and still not paying the money back...unbelievable! I'd dun them! I'd be nice about it at first but if they refused....hell would follow with my dealings with them I'm afraid!

Hope you and Charlie continue to do well. I will also pray he gets through his days at work. I hope his co-workers are understanding and try to help when they can.

Love you Sue,
Deb


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Sue, I cannot imagine the relatives not realizing that you all need that loan money. Your garden looks wonderful, I don't think mine would look that good if I had endured everything you have. I hope Charlie will do okay with working again. As Deb said, I hope his co-workers will chip in if needed. Poor Amber, I hope she won't have bite and jaw issues. Take care of yourself too.

Carla


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Sue-----Just wanted you to know you are in my thoughts and prayers---

Hope things are a little better for you and Charlie---

Florence


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  • Posted by roselvr 6B Lower S.Jersey (My Page) on
    Fri, Jul 2, 10 at 8:39

Deb, glad to hear he stayed cancer free.

As far as the loan.. I can't say anything because it's his family. My SS hates me as it is & if I say something it will make things worst. I'm going to speak to hub about it this weekend.

The extractions really messed Ambers jaw up. We were at the oral surgeon again 2 weeks ago with an infection. She keeps getting food in it :(

He had a CT scan which the radiation oncologist doesn't normally do; this was part of the clinical trial. They found 2 spots but when RO looked in his throat via scope, it was fine. He has a PET scan the end of July.

My MIL will be out for 2 weeks in August, spending a week with us. I don't know what I'm going to do with her, he has to work. I then see a back specialist in Philly the 10th.

Garden is horrible. So many Japanese Beetles again. I can't even get close to the gardens because they attack me.


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