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theroselvr

My hubby - need prayers..

theroselvr
14 years ago

I was hoping the old posts would be back up by the time I got home from picking him up; but I see it is not. I'm not sure where I left off; think it was Thanksgiving dinner.

For those just starting to read; the link to my post in the rose forum is below. I have our wedding picture in the 1st post.

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.

I'm going to post this to the rose forum as well since the forum isn;t working right, I'm sure the post will get eaten by tomorrow. lol

Here is a link that might be useful: My hubby - need prayers.. - rose forum link

Comments (49)

  • 2ajsmama
    14 years ago
    last modified: 9 years ago

    Oh, what an awful couple of weeks you guys have had! Is the stomach/tube infection actually *gone*? I'm glad he's able to take food by mouth - does that mean they can take the tube out soon and hopefully let it heal?

    Positive thoughts going out to you to get through this latest setback, I hope he doesn't have to do more chemo than planned but maybe if he does it will be just another half dose sooner, then back on schedule?

    If this thread gets lost, just start another. We're here. (((((HUGS)))))

  • cooperbailey
    14 years ago
    last modified: 9 years ago

    My hugs and prayers to you and your husband.It does sound like he is beginning to go in a positive direction. that is encouraging. take care of yourself so you can take care of him.

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  • amysrq
    14 years ago
    last modified: 9 years ago

    Oh dear, what a long ordeal you've been through this time. It is unfathomable how much advocacy a patient needs. I will hold you in my prayers for a smooth next couple of weeks and continuing improvement.

  • golddust
    14 years ago
    last modified: 9 years ago

    I know it all sounds so scary and bad but hopefully he has hit bottom, gone through the worst and will begin to improve. Stay strong and keep advocating!

    You are a beautiful couple, BTW. I'll keep praying.

  • roobear
    14 years ago
    last modified: 9 years ago

    I'm so sorry things have been so difficult for your family lately. I met my husband way after his chemo and radiation treatments. I can't imagine how hard it must be to watch him go through it. You and your husband are in my prayers, I hope things improve soon. I've heard miracle fruit can sometimes help with the taste buds issue.

  • squirrelheaven
    14 years ago
    last modified: 9 years ago

    So sorry for all you and dh are going through. It's terribly hard and sometimes you really do need to take matters into your own hands, even if the docs and nurses don't appreciate it. Many mistakes and mishaps do happen in the hustle and bustle of a busy hospital, so it's always good for a patient to have other advocates looking after them. It's obvious you are very good at that. He's lucky to have you looking after him through all of this.

    Take care of yourself, too. Will send out positive thoughts and energies for a successful treatment and full recovery. Hope the treatments aren't too bad or long in duration.

  • mahatmacat1
    14 years ago
    last modified: 9 years ago

    You are amazing, ((((roselvr)))). I'd written a longer note but it's all so insufficient. You and your DH are a powerful team.

    More positive energies coming your all's way, for healing without more complications for your DH, and for strength and health for you.

  • rockmanor
    14 years ago
    last modified: 9 years ago

    My heart goes out to you both. Unfortunately, your story also reminds me of the horrific struggles our adult son went through two years ago (totally different diagnosis, but most definitely life threatening.) Dh and I were at least able to take turns at the hospital so that one of us was with ds at all times. You must be exhausted having to be your dh's only advocate. If there's a family member or close friend who can give you a break once in a while, do take him up on the offer so that you can preserve your strength. He or she can wear a good face mask and use extra hand sanitizer (& whatever else your dr. suggests to protect your dh.)

    I lost count of the number of times I had to research what was being done to ds, question everything, insist on his doctor(s) being called about adverse effects of treatment, etc. Eventually we had him med-evac'd to a different hospital, which saved his life. The state university teaching hospital that ds was moved to may not be as "pretty" as the private facility in the other city, but the medical team is first rate. Its cancer treatment facility is highly regarded, too, and I told dh that we will return there should either of us ever need it, no matter where we live when he retires.

    If your hospital has an official Patient Advocate, consider calling her about any problems you have with the care your dh receives (or that nurse with the attitude.) I found that certain staff was far more responsive to the PA's requests than to mine. One rule I got "bent" thanks to the PA was being permitted to bring in bottles of Ensure for ds, for those few days when he wasn't on TPN. If he hadn't be able to drink the Ensure, his intake would have consisted of one carton of yogurt per day since he wouldn't eat anything else they provided. Months later, when he was being weaned off his PICC line, the Ensure was all he could tolerate at first. He continued to drink the high protein version after he resumed a semi-normal diet, just to make sure he was getting adequate nutrition. It's something you may want to consider for both of you, since you're probably too tired for grocery shopping and cooking for yourself.

  • deedee-2008
    14 years ago
    last modified: 9 years ago

    I am so sorry to hear about the horrible ordeal that you and your DH went through. I pray that both of you will continue to have the strength to deal with this. Hopefully now that his mouth is healing more, the feeding tube may be removed sooner. (((hugs)))

  • tinam61
    14 years ago
    last modified: 9 years ago

    I'm so sorry you all are going through this. I am sending prayers for your both. For healing and for strength through the treatment.

    tina

  • tishtoshnm Zone 6/NM
    14 years ago
    last modified: 9 years ago

    You will certainly be in my prayers for healing, for strength and for the right medical providers. Your husband is very, very lucky to have you.

  • johnmari
    14 years ago
    last modified: 9 years ago

    I'm sorry to hear about all these vile complications and am crossing my fingers that this is the last bump in the road (as another chronic-pain person, I am especially sending YOU positive thoughts... all this driving and sitting in uncomfortable chairs and sleepless nights has got to be just brutal and I feel for you!).

    If it's convenient, I'd like to hear more about the "magic mouthwash" you got and what liquid painkiller your DH was given that caused him such terrible nausea - was there some reason why he wasn't given something like Phenergan suppositories or Zofran melts to control the nausea/vomiting? DH is having sinus and throat surgery (nothing serious going on, just correcting some chronic nasties before our insurance blows up in our faces on January 1, but the following few weeks are expected to be quite unpleasant) on the 23rd and he's being a bit head-in-the-sand about the whole thing. I'm going with him to the preop appointment with the surgeon and getting his pain management/aftercare squared away is going to be pretty much my job. I've already made sure that we will be getting all his post-op scripts then, not at discharge as is the norm, since DH will be getting out of hospital on Christmas Eve afternoon. Someone will be on call but it being a holiday I don't expect to be able to reach anyone easily or quickly, and our insurance company penalizes us with a steep charge for an ER visit. Luckily there's a large pharmacy open and staffed 24-7-365 5 minutes from our house, but I'd still rather have everything arranged and waiting for him when he staggers in the door so I don't have to leave him alone even for a few minutes. (Good thing we don't celebrate Christmas, huh? LOL)

  • DLM2000-GW
    14 years ago
    last modified: 9 years ago

    roselvr I'm holding you and your DH in my thoughts and hope you and he have much easier days ahead. Rockmanor has wonderful advice and I especialy think her suggestions for finding someone to assist you is critical for your well being and your ability to help your DH. You have to take care of yourself so that you can take care of him and I hope there is someone who can be your 'wingman'.

  • itsawrap
    14 years ago
    last modified: 9 years ago

    Hang in there sweetie. You're the best advocate your husband can have. Hugs and prayers sent your way.

  • mrsmarv
    14 years ago
    last modified: 9 years ago

    My thoughts and prayers are with you and your DH. My DH was diagnosed and treated for bladder cancer almost 3 years ago so I can understand some of what you're going through. You are his best advocate....may your strength guide you through this difficult time.

    (((Nora)))

  • work_in_progress_08
    14 years ago
    last modified: 9 years ago

    roselvr - prayers definitely coming your way. Like fly, feel like anything said would be insignificant.

    Does your husband have a G button feeding tube. We have been successful with them in kids with my DD's disease. Just wondering as I have never come across this problem. I realize its a different diagnosis, but wanted to ask you.

    Magic mouthwash is equal parts lidocaine, benedryl and if I am not mistaken, Milk of Magnesia. Unfortunately, that does not work well for everyone. We use orajel or other over the counter products. I was buying the MMW script forerver (insurance problems) and DD told me after a year it was not helping as much as orajel. Might want to try the oral gel.

    I am hoping/praying things will turn a corner for you. You are a great advocate for your DH!

  • bestyears
    14 years ago
    last modified: 9 years ago

    A few years ago my mom had a very rare eye cancer. She ended up calling the NIH and got the best information from them. It really helped her know what the best protocol, treatments, medicines, etc. were. Her physicians respectied this information, unlike other internet information. They were very available, friendly, etc. They even have some kind of a setup where they can electronically transmit reams of information to you and have it printed out at your local library.

    Do you have someone who could at least help you with that part of it?

    Many prayers being said here for you....

  • graywings123
    14 years ago
    last modified: 9 years ago

    I had tears welling up in my eyes reading your post, roselvr. I can feel your pain and frustration. It's bad enough to have to fight the cancer without having to deal with these other issues and communicate with the hospital staff, oncologist and others.

    And you have back pain as well?

  • awm03
    14 years ago
    last modified: 9 years ago

    roselvr, saying prayers for your DH & you. Hope he's able to rest well and eat a little more. I'm sorry you both are going through this ordeal.

  • theroselvr
    Original Author
    14 years ago
    last modified: 9 years ago

    Thank you everyone. Yes, it was a very rough week; my pain was horrible; no clue how I kept going.

    Thanksgiving day was especially hard; my heart was being ripped out watching him so sick. I was thankful he was home but how they discharged him was the pits.

    Had I not gotten satisfaction Thanksgiving day; I was going to go to hospital guest services. I knew what I could do if I needed to.

    The feeding tube - they call it a G-Tube - as well as a PEG tube - the infection is looking great today, whatever antibiotics they gave him during chemo looks like it's kicking out the last of the infection.

    I'll try to update more when I get home; have to leave for radiation. They are working on the Ben Franklin bridge so we have to leave earlier.

  • theroselvr
    Original Author
    14 years ago
    last modified: 9 years ago

    btw, his son WAS helping us until last Monday when he was admitted. He hasn't answered a few texts that Monday so I stopped texting him.

  • threedgrad
    14 years ago
    last modified: 9 years ago

    May God bless you and your husband. Stay close to God in your hearts. Believe me, that really helps you cope. I, too, was being treated for cancer over the last year. Prayer is what saved me.

    Love from Phoenix,
    Eileen

  • jlc712
    14 years ago
    last modified: 9 years ago

    I'm so sorry you are going through this. Sending lots of hugs and good thoughts to you...
    My secretary's father has the same type of cancer and had surgery in October. He had a large mass removed from his throat/jaw, and some lymph nodes. They were very grateful that they were able to leave his tongue intact. They didn't think he was going to make it before the surgery. He had gotten under 100 lbs, and could not eat or drink anything. He couldn't even tolerate anything but very small feedings through the feeding tube. He went through chemo and radiation and then had the surgery. He is doing GREAT now.
    Take care,
    Jen

  • texanjana
    14 years ago
    last modified: 9 years ago

    I am so sorry, Rose. I am praying for you and your DH.

  • Bumblebeez SC Zone 7
    14 years ago
    last modified: 9 years ago

    I'm so sorry for you and dh, will pray for the both of you.

  • holleygarden Zone 8, East Texas
    14 years ago
    last modified: 9 years ago

    What a terrible situation. You are definitely on my prayer list.

  • johnmari
    14 years ago
    last modified: 9 years ago

    work_in_progress - milk of magnesia? Why would someone put a laxative, and a rather rugged one at that, in a mouthwash? *puzzled* DH's surgical sites are going to be waaaay in the back of his throat (right where that good ole gag reflex is - and have I mentioned that I'm emetophobic?) and to boot his tongue is expected to be very sore and swollen from the clamp for a few days... I can't imagine trying to get something like Orajel all the way back there, which is why I was interested in a mouthwash/gargle-able substance. (I go through a lot of Orajel-type stuff since I'm prone to biting my tongue and cheeks when my face goes numb, as it does regularly, and then when the numbness goes away again... owwwwww. I like Zilactin, it doesn't taste quite as nasty.) I know Orajel makes a rinse but it's hydrogen peroxide, no numbing agents. Chloraseptic and Cepacol sprays don't even cut it for common-cold sore throats.

    roselvr, I'm really glad to hear that the infection is doing better.

  • CaroleOH
    14 years ago
    last modified: 9 years ago

    So sorry to read what a bad week you all had. Is he able to eat any better?

    You are a blessing to your DH. It scares me to death that a family member has to be so on top of things to insure their loved one gets proper care.

    Take care of yourself too, and hopefully things will get easier with the future rounds.

    I've had several friends battle cancer in the last few years and Lance Armstrong's book really gave them the motivation to stay strong during their course of treatment. I remember one picture of him laying in his hospital bed - looking like death warmed over, and to see him win his cancer battle and come out stronger than before is an inspiration that no matter how bad it gets, try to stay positive, hunker down and fight this disease with all you've got. Unfortunately the treatments are the most devastating part. But, stay strong and know he'll get through this!

  • magothyrivergirl
    14 years ago
    last modified: 9 years ago

    You are both in my prayers. I know how hard this is on you, I am sorry you have to go thru this.
    A hint that may help with the taste of food - Do not use metal utensils or anything metal. Use plastic forks and spoons. Try to cook in glass - not metal pans. It has something to do with the radiation. Also avoid fresh fruit and foods while his immune system is down. These suggestions are easy things to try to help with his food - they certainly won't hurt him& the food may taste a little better & he will eat more. Good luck to you.

  • Sheeisback_GW
    14 years ago
    last modified: 9 years ago

    Wow, what a couple of weeks you've both had. I'm sorry you guys are going through this. I can't even imagine. Still praying.

  • work_in_progress_08
    14 years ago
    last modified: 9 years ago

    JM- thanks for picking that up. Its Maalox. Sorry, brain on overload at the moment. Equal parts lidocaine, Benedryl and Maalox. There are other combos as well. We have used straight lidocaine at times, but you have to extremely careful not to swallow which made it difficult using with a child; ergo the MMW. Everyone is different, what works for one, may not work for another. Years ago our ped recommended Chloraseptic. However, that really doesn't get her through a meal. She may have to rinse a couple of times, she doesn't swallow that either. What is Zilactin? Does it help with mouth pain? Is it an RX? It has been explained to me, the reason for not doing an actual pain med (besides the addiction side effect) is that topical application has been found to be most effective with mouth sore pain?? IDK, just what they tell me?

    Roselvr - don't worry too much that your DH will lose all muscle tone in his mouth from relying on the feeding tube. DD hasn't in 19 yrs. For now rely on the liquid nutrition to keep his weight up. Keep the popsicles coming, pudding, whatever will attract his interest. I have alot of experience in finding foods that can be eaten with a mouth in pain. I guess alot of my anxieties over DD's situation were an outlet for cooking all kinds of stuff my kid would be able to eat. I do hope your DH is feeling well enough to eat better very soon, but the liquid feed will keep him on a steady calorie intake.

    Your wedding photos are just beautiful. Positive energy is definitely coming your way quickly, just realized that I probably am only a stone's throw, if your zone is still the same.

    I know keeping informed on the latest treatment protocols is very time consuming and a bit overwhelming, but it is definitely a way to have some control in a situation where you feel that you don't have any. However, that can be a double edged sword. Keep your balance by decompressing when you have a moment to yourself. Catch a yoga class, make a point to do any type of relaxation exercise that works for you. I have found that by just paying attention to my breathing keeps me from losing it at times. Deep cleansing breathing is something you can do anywhere no equipment needed.

    Hang in there and from experience, I will tell you that my coping strategy is dealing with life one day at a time.

  • User
    14 years ago
    last modified: 9 years ago

    roselvr, your situation is every families and spouses nightmare. I can't even begin to imagine what you must be going through. Your family is in my prayers and I hope that things will be ok for you all.

  • johnmari
    14 years ago
    last modified: 9 years ago

    WIP - Zilactin is an OTC oral anesthetic, 10-20% benzocaine depending on exact product, much like Orajel. I just prefer the taste of the base. Comes in a gel or individually packaged swabs (which I like for carrying in my purse). I get it at the regular drugstore, Walgreens or Rite Aid or whatever.

    DH is definitely going to be getting regular pain medication - as well as fairly extensive tissue removal in the throat he's getting his sinuses "Roto-Rootered", a good deal of bone work and messing with bone always hurts like h*ll - but I did know that for the mucous membranes topical anesthetics do make a major contribution. A lidocaine/Benadryl/Maalox combo does make more sense! I suppose we could try mixing something up ourselves by combining OTC Orajel liquid (20% benzocaine) with a liquid antacid and liquid Benadryl (which I can get at the dollar store - I get it for tranking the dog for storms and fireworks LOL), although it might not end up being any cheaper than the rx mix depending on the amount of the Orajel needed, those bottles are tiny. Maybe I'll do up a test batch before surgery, although I'll at least get a rx for the lidocaine at the preop and I can get the other ingredients myself. Thanks for the info.

  • golddust
    14 years ago
    last modified: 9 years ago

    Roselvr, just checking in to see if there is any updates. I find myself thinking of you and your DH throughout the day.

    Do keep us posted, OK?

  • arleneb
    14 years ago
    last modified: 9 years ago

    Just saw this . . . Rose, hope things are beginning to turn for your DH. What a frustrating time you've had. Prayers for his healing and for peace for you . . . and cooperation with you throughout the medical staff.

  • work_in_progress_08
    14 years ago
    last modified: 9 years ago

    JM- your dentist can prescribe the lidocaine and you can mix it, or GP or surgeon can write the script for lidocaine or MMW and pharmacy can mix it. Sounds like your DH is going to need some serious pain meds to rinse with. I am definitely going to look for the Zilactin. We will try anything. Have used Hurricane Gel which is OTC, but you have to make friends in the pharmacy to get someone willing to order it:). Hurricane gel was not quite as effective for DD however, but when she was a toddler it made sense as it came in flavors like bubblegum, etc. Best of luck to you and your DH.

  • les917
    14 years ago
    last modified: 9 years ago

    Rose, I just read this thread for the first time. I am so sorry for all that you are going through, both you and your DH. I know that your strength and determination to get him the best treatment done correctly will keep him going as well. He is so fortunate to have you as his advocate.

    I will be thinking of you both, and sending good thoughts for better days ahead soon.

  • theroselvr
    Original Author
    14 years ago
    last modified: 9 years ago

    Johnmari, sorry I forgot to answer you.. he has nausea meds; some days he doesn't want to take them because he feels ok. His stomach is messed up from the feeding tube; had a CT scan Friday, we're seeing a GI Dr on Wednesday. Right now his liquid "formula" makes him sick. The radiation Dr wants him to have 4 cans per day but he can't stomach it. The liquid pain med was Roxicett - with his stomach being so sensitive; it comes up.

    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. I didn't have time to ask why he hasn't replied to my texts; I wish I had though.

    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.

  • mrsmarv
    14 years ago
    last modified: 9 years ago

    I'll continue to send warm and healing thoughts to you and your DH. My prayers are with both of you. I hope it is uphill from here...you have both been through the wringer.
    Please try to find a bit of time for "you". You need to decompress as much as you need to be strong and supportive.

  • theroselvr
    Original Author
    14 years ago
    last modified: 9 years ago

    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.

  • cyn427 (z. 7, N. VA)
    14 years ago
    last modified: 9 years ago

    Sue, just saw this for the first time and read through the whole thread. It sounds as if things are much better than last year and I hope that continues. I am sending all good thoughts your way and hoping you both are able to spend some time at the shore in the next few months just watching the waves.

  • kellyeng
    14 years ago
    last modified: 9 years ago

    I've been following your story without posting but today your courage and strength left a lump in my throat. I'm not sure if I could handle all that you and your DH have gone through.

    I find it incredibly sad that not only do you have to deal with the disease but also the politics of the hospitals and insurance.

    It should not be that way - it just shouldn't.

  • bestyears
    14 years ago
    last modified: 9 years ago

    Exactly what kellyeng said.... I'm sending my prayers and good wishes your way....

  • paint_chips
    14 years ago
    last modified: 9 years ago

    You are such a strong woman to be fighting for your husband like you have. I really admire you.

    Prayers for your dh and a recharging energy for you!

  • lynninnewmexico
    14 years ago
    last modified: 9 years ago

    I am so incredibly sorry that you both have to go through this and will continue to keep your DH and You in my prayers. God bless and strengthen you both.
    Lynn

  • tinam61
    14 years ago
    last modified: 9 years ago

    Prayers continue for you and your husband. Keep up the good fight, although you shouldn't have to. Thanks for updating and please keep us posted.

    tina

  • cyn427 (z. 7, N. VA)
    14 years ago
    last modified: 9 years ago

    In your honor, I wrote my senators and congressman asking them to vote for the public option in the health care reform bill. No one should have to worry and struggle the way you two have with the insurance companies.

  • golddust
    14 years ago
    last modified: 9 years ago

    I did the same thing, cyn427! In the United States of America, it is sinful that we can't take care of each other better than we do. My health insurance costs $1000. per month and we just heard it was going up again. Sheesh! Generics only policy, at that.

    Keep up the fight. I hope your DH's spirits continue to lift. Please keep us informed.

  • deegw
    14 years ago
    last modified: 9 years ago

    This probably belongs in PI, but what roselvr and her husband have gone through is (imo) the elephant in the room in the healthcare debate. Many people with health insurance think that the healthcare system is not broken and are not in favor of any major changes. It's the "other guy" who can't get insurance, has major health problems, gets laid off and loses benefits, etc. What people don't realize is that if you get really sick, most policies are cr@p.


    roselvr - Thank youf or sharing your story. I will pray for you and your husband.

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