no more chemo..probably

cindysuetoyou

Well, I'm back again. I am probably going to be a regular here since I am having a hard time (just like everyone else) and I need a place to say what I'm feeling without breaking my family's heart. It adds to their pain and grief when they see me crying and miserable. I try to keep a grip on my emotions but it's taking a huge toll on me.

So...David had to take a break from chemo (carboplatin) because they wouldn't give it to him until he was fully recovered from an abscess that he had to have drained and from a horrendous outbreak of shingles...btw, did you guys know that cancer patients are more susceptible to shingles when they are doing chemo? If you've had chicken pox, the virus is latent in your system and when you become compromised from chemo, it can flare up as shingles. I didn't realize how awful shingles are. My point in telling you is so that if you suspect you or your loved one has shingles, do not waste one minute---not even one second---see your doctor! Once there is an outbreak, it has to run its course, but the sooner you catch it, the better chance you have of keeping the outbreak to a minimum. They started David on antivirals and gabapentin on day three and it saved him from having his cornea becoming involved. They told me cornea involvement is considered a medical emergency and can cause blindness. Even so, David spent a full week in the hospital because of the shingles and he was in so much pain and so miserable. And now he is dealing with neuropathy from the shingles. And that's miserable too.

Anyway, David's abscess is fully healed so I called his NO and they do not think David should continue with chemo. I knew this day was coming but there wasn't any way I could emotionally prepare for it. I'm sick with grief but I also have mixed feelings about this. I don't think David should do chemo. I think it will make the last bit of time that he has left really bad and miserable. He's so sick and messed up when he does chemo. But before he got this sick--when he could still talk and communicate, he said that he still wanted to do chemo. Now he's not talking hardly at all, and he doesn't think to say, "Shouldn't I be doing chemo now?" He's not...I don't know how to describe it. It's like he is bemused...or in another world. But then other times he will say a sentence and seem like he's aware of what is going on. But those times are rare, and they are getting more rare. I don't know what is going on inside his mind, what he is thinking. He stares at me intently with a desperate look, kind of, and when I ask him what he is thinking, he doesn't respond. When I ask if he is mad, scared, etc. he shakes his head no. When I ask him if he understands what I am saying, he nods. I asked him if he is thinking anything---he doesn't answer. I ask if his mind is just blank and he is not thinking at all, and he nods yes.

I am torturing myself, thinking that if David could talk, if he was his old self, he would say, "Mom! I trusted you! I thought you would take care of things for me when I couldn't take care of them myself. You knew I wanted to keep doing chemo, and you didn't make it happen for me. You let me down." Our NO's nurse said that she does not think that our NO will authorize chemo. She said he would only do it if he believed that chemo was in David's best interest. (Well, duh...why else would we do chemo? For my sake? Sheesh...) So the decision may be taken out of my hands. She is talking to our NO, and I talked to my family. My husband, and David's brother and sister, and my sister. They all think that David shouldn't do chemo. They think (and I agree) that the chemo could kill him. He's so weak and sick, so compromised....The nurse said that he is high risk for shingles again. That would be so terrible if he had shingles again.

They all think that I shouldn't even say anything to David about stopping chemo. They said, "Why? What would be the purpose of telling him?" I don't know if he would fully understand. I think it would cause panic, grief, more depression, that he would just give up and die right now. If he even understood what we were telling him. I don't think we will tell him that he won't be doing chemo unless he asks, and I don't think he will ask. The pain doctor kept asking me about chemo, and when we would do it again, and I took him out in the hall and told him that we wouldn't be doing it any more, and then I had a meltdown and cried my head off...again. I tried so hard to get a grip but I'm on overload because of how sick David is, and because of all the pain from the neuropathy.

Right now I am sitting in his room and he is sitting up in bed with his dinner tray in front of him. He is slumped sideways, asleep, with his fingers in his bowl of food. He ate about 3 bites, and I fed them to him, and I had to coax and work so hard for him to even open his mouth. I don't know if he swallowed it and now I'm afraid he might aspirate it. His appetite is just about gone and he is having major trouble swallowing again. They are talking about putting a peg in his stomach. David started shaking and trembling when they talked about it, and I asked him if that upset him and he nodded. My poor baby! It sucks enough just to have brain cancer...but to have diabetes, shingles, abscesses, and now the thought of a peg too....it's so wrong, so terrible, so so so heartbreaking!!!!

David has neuropathy from the shingles. It's extremely painful and it itches and burns. He has rubbed his eyebrow and his eyelashes off, and he has scratched open sores on his face. We went to a comprehensive pain center today and they gave him a nerve block shot in his eyebrow. That was not the main nerve that they wanted to block but they can't do the main nerve because it's 3 inches in and David would have to lie still for 15 minutes while they put needles in and they need feedback to make sure they are in the right area and David can't give any feedback because he can't talk or respond most of the time. They think he should stop taking extended release morphine and take methadone instead. I need to research and get second opinions before I switch his pain meds. I am wary of methadone. Our nurse told us it's synthetic heroin. Really? Do any of you know anything about methadone? All I know is that they give it to drug addicts to help wean them off drugs, and it causes its own issues.

After that nasty shot in the eyebrow, we missed our wheelchair transport by five minutes. We had to wait TWO HOURS for another ride. We had to stay in a lobby with no chairs. David was in a wheelchair but he was miserable for that long a time, and I hurt my back transferring him from his bed to his wheelchair last week (he's 180 lbs dead weight) and I was not very happy either. I had to stand or sit on the tile floor. My back hurt and I was so freaked out for David. He was so fatigued that he shook and trembled, and he trembled so hard that his teeth chattered. The transport company finally told me that the ride would be there in 30 minutes, and when I told David that, he whispered, "We've heard that before." I was amazed that he was that much "in touch" with what was going on. When we finally got home, he passed out asleep and he has not been doing very good ever since. He didn't eat, couldn't swallow his applesauce/pills, his mouth is gaping open even when he is awake, and he won't answer any questions, not even with a nod or head shake. He looks like a baby bird that fell out of a nest....dazed, scared, confused, unsure of what is going on, with his mouth gaping open. It tears my heart up---this is my son who was so tall, so lean, so brilliant, smart, witty, full of life, confident, strong, laughing and hugging and teasing me. He is a shadow of what he used to be. How can I ever recover from the grief?

I hope that we are making the right decision about the chemo. I hope that after David dies, I don't hate myself and blame myself and feel guilt for not insisting that they do chemo regardless. But what if I insist, and it kills David? I'm not exaggerating...it could definitely kill him. He could barely tolerate it when he was in much better shape.

So that's where I am today. Right now David doesn't seem to be in pain, so that is what I will think about and be grateful for. I just can't think about what tomorrow holds for David, for me, for our family.

Thank you for letting me vent. If any of you have gone through, or are going through, similar situations with discontinuing chemo, please tell me about your experience and how you made decisions. I'd really appreciate it.

Love and blessings,
Cindy in Salem, OR

mr steve

methadone
my wife was on fentanal patches 100mcgs it only lasted for 2 days and then she would take levo. Methadone was going to be next, it was made for sever pain but the also found out that it is easer to come off of methadone (withdraw systems wise) than it is than smack. Her pain was so bad that we had to switch to IV meds before we went the methodone route, but even that really didn't help that much more. It wasn't much longer after that she couldn't swollow anymore anyway.

I hope this helps
Steve

cindysuetoyou

mr steve said:

methadone
my wife was on fentanal patches 100mcgs it only lasted for 2 days and then she would take levo. Methadone was going to be next, it was made for sever pain but the also found out that it is easer to come off of methadone (withdraw systems wise) than it is than smack. Her pain was so bad that we had to switch to IV meds before we went the methodone route, but even that really didn't help that much more. It wasn't much longer after that she couldn't swollow anymore anyway.

I hope this helps
Steve

don't know...
I met with our palliative care doctor today. She does not think we should switch to methadone. She feels very strongly that it would be a mistake. She said that methadone does not go out of your system like morphine and it lingers for days. She said that there are more accidental overdoses from methadone that from morphine, dilaudid, oxycotin, even cocaine, combined. She is currently researching methadone and preparing a paper for a journal on the use of methadone in a palliative setting. So I guess we will scratch that idea.

One of the things that I have struggled with, and still do, is the lack of agreement regarding treatment protocols within the oncology medical community. We have had so many conflicting, different recommendations, and almost every time, one doctor will be for a treatment, and another will be dead set against it. It made us so frightened and we felt such tremendous pressure whenever we had to make a decision on what to do. One NO told me that no one agreed because basically nothing really worked that well. He said if any one thing really worked well, if it was head and shoulders above any other treatment, then everyone would be doing that same treatment. But nothing had been proven to be really consistently effective. That sure did not help us feel much better.

I had asked about fentenal patches because David had used them when he was recovering from having surgery on an abscess. His doctor said that they were more for acute pain from surgery, etc. than for chronic pain, like David's neuropathy. His palliative care doctor is looking into a new cream that might relieve David's pain. It's so new that we would have to special order it from a pharmacy that can mix it on the premises. You can't just order it all pre-made yet. But we are not sure that David can use it, because David does random behaviours (like picking his lidoderm patches off) and he is very likely to rub the cream off his forehead and into his eye. It will burn his eye like he has red hot peppers in it. So I'm not sure that we want to risk using the cream. For now, we will continue to treat his neuropathy with morphine, dilaudid, lidoderm patches, and regular nerve block shots.

Thank you again for writing to me.
Love and blessings,
Cindy

Noellesmom

cindysuetoyou said:

don't know...
I met with our palliative care doctor today. She does not think we should switch to methadone. She feels very strongly that it would be a mistake. She said that methadone does not go out of your system like morphine and it lingers for days. She said that there are more accidental overdoses from methadone that from morphine, dilaudid, oxycotin, even cocaine, combined. She is currently researching methadone and preparing a paper for a journal on the use of methadone in a palliative setting. So I guess we will scratch that idea.

One of the things that I have struggled with, and still do, is the lack of agreement regarding treatment protocols within the oncology medical community. We have had so many conflicting, different recommendations, and almost every time, one doctor will be for a treatment, and another will be dead set against it. It made us so frightened and we felt such tremendous pressure whenever we had to make a decision on what to do. One NO told me that no one agreed because basically nothing really worked that well. He said if any one thing really worked well, if it was head and shoulders above any other treatment, then everyone would be doing that same treatment. But nothing had been proven to be really consistently effective. That sure did not help us feel much better.

I had asked about fentenal patches because David had used them when he was recovering from having surgery on an abscess. His doctor said that they were more for acute pain from surgery, etc. than for chronic pain, like David's neuropathy. His palliative care doctor is looking into a new cream that might relieve David's pain. It's so new that we would have to special order it from a pharmacy that can mix it on the premises. You can't just order it all pre-made yet. But we are not sure that David can use it, because David does random behaviours (like picking his lidoderm patches off) and he is very likely to rub the cream off his forehead and into his eye. It will burn his eye like he has red hot peppers in it. So I'm not sure that we want to risk using the cream. For now, we will continue to treat his neuropathy with morphine, dilaudid, lidoderm patches, and regular nerve block shots.

Thank you again for writing to me.
Love and blessings,
Cindy

David
Oh, Cindy. You got the rough road. Bless your heart. I've been reading your posts and thinking how tiring it is for you to have to be so strong.

It sounds like an amazing young man has been living a nightmare for some time now. We can artifically keep people alive for years and we can make decisions that prolong agony and I know that is what you want to avoid.

Why some people have longer, more difficult transitions from this life is something we may never know. It is just a sad fact. I think people who were in incredibly physical shape, as you described David, have bodies that just have more endurance and they survive anything longer than the rest of us mere mortals

Pain management in a case such as David's gets difficult - is there a pain management clinic there who might come to David and help you work out what is best for him at this time? We have several pain clinics in our area.

My husband has severe neuropathy from radiation - currently, he is using the Butran patch which could be put on David's body somewhere he cannot reach it. Jim says it works well. Maybe you could discuss with your doctor.

Hugs, CindySue.

kimmygarland

Noellesmom said:

David
Oh, Cindy. You got the rough road. Bless your heart. I've been reading your posts and thinking how tiring it is for you to have to be so strong.

It sounds like an amazing young man has been living a nightmare for some time now. We can artifically keep people alive for years and we can make decisions that prolong agony and I know that is what you want to avoid.

Why some people have longer, more difficult transitions from this life is something we may never know. It is just a sad fact. I think people who were in incredibly physical shape, as you described David, have bodies that just have more endurance and they survive anything longer than the rest of us mere mortals

Pain management in a case such as David's gets difficult - is there a pain management clinic there who might come to David and help you work out what is best for him at this time? We have several pain clinics in our area.

My husband has severe neuropathy from radiation - currently, he is using the Butran patch which could be put on David's body somewhere he cannot reach it. Jim says it works well. Maybe you could discuss with your doctor.

Hugs, CindySue.

((Hugs))
CindySue, I am crying reading your posts. My husband battled for 3 years and passed away suddenly when we thought he was doing so well. Reading your posts, frankly, makes me THANKFUL. He did not have to endure what your son is going through.

My heart breaks for you. I have told my son, I could get through this with my husband - his dad, but if something like this happened to him they would have to bury me with him.

I don't come on here very often any more as it is so painful and fresh from him dying right now (6/17). But I am glad I did today.

Sending hugs and prayers to you and your family.

cindysuetoyou

Noellesmom said:

David
Oh, Cindy. You got the rough road. Bless your heart. I've been reading your posts and thinking how tiring it is for you to have to be so strong.

It sounds like an amazing young man has been living a nightmare for some time now. We can artifically keep people alive for years and we can make decisions that prolong agony and I know that is what you want to avoid.

Why some people have longer, more difficult transitions from this life is something we may never know. It is just a sad fact. I think people who were in incredibly physical shape, as you described David, have bodies that just have more endurance and they survive anything longer than the rest of us mere mortals

Pain management in a case such as David's gets difficult - is there a pain management clinic there who might come to David and help you work out what is best for him at this time? We have several pain clinics in our area.

My husband has severe neuropathy from radiation - currently, he is using the Butran patch which could be put on David's body somewhere he cannot reach it. Jim says it works well. Maybe you could discuss with your doctor.

Hugs, CindySue.

Thank you
Thank you, Noellesmom. I think we have a grip on the pain management issue. Now we have a whole new set of issues..... I posted about them on a new thread. I forgot to mention that David was dehydrated and that they said being dehydrated makes every neurological deficit a lot worse. We saw improvement after they startedviv fluids.

Thank you again for posting.
Love and blessings,
Cindy

cindysuetoyou

kimmygarland said:

((Hugs))
CindySue, I am crying reading your posts. My husband battled for 3 years and passed away suddenly when we thought he was doing so well. Reading your posts, frankly, makes me THANKFUL. He did not have to endure what your son is going through.

My heart breaks for you. I have told my son, I could get through this with my husband - his dad, but if something like this happened to him they would have to bury me with him.

I don't come on here very often any more as it is so painful and fresh from him dying right now (6/17). But I am glad I did today.

Sending hugs and prayers to you and your family.

I am so sorry
Oh, Kim, I'm so sorry that you lost your husband! it's terrible to lose a spouse--it's terrible to lose a child. Cancer is a horrible disease and I pray all the time for a cure so others can be spared this pain and misery and sorrow.

I posted another thread about our continuing battle. I'm fighting hard but I'm scared. David is really sick.

I hope and pray that you are able to heal from the loss of your husband. 'm glad that you have a wonderful son who can bring comfort to your heart.

Love and blessings, mercy and peace to you,
Cindy in Salem, Oregon

BenLenBo

cindysuetoyou said:

Thank you
Thank you, Noellesmom. I think we have a grip on the pain management issue. Now we have a whole new set of issues..... I posted about them on a new thread. I forgot to mention that David was dehydrated and that they said being dehydrated makes every neurological deficit a lot worse. We saw improvement after they startedviv fluids.

Thank you again for posting.
Love and blessings,
Cindy

POWERADE
Hi Cindy,
Just a quick note, Benjamin was drinking Powerade which replenishes the body of all it
nutrients and vitamins. Still is drinking it to day to keep fluids up in his body, has his
favorites, like Wild Cherry, Melon and Fruit Punch. This was also, listed in the Cancer
Handbook he was given on keeping hydrated.
Praying for strength and courage to continue on in this journey called LIFE!

(((Hugs)))

Carol

cindysuetoyou

BenLenBo said:

POWERADE
Hi Cindy,
Just a quick note, Benjamin was drinking Powerade which replenishes the body of all it
nutrients and vitamins. Still is drinking it to day to keep fluids up in his body, has his
favorites, like Wild Cherry, Melon and Fruit Punch. This was also, listed in the Cancer
Handbook he was given on keeping hydrated.
Praying for strength and courage to continue on in this journey called LIFE!

(((Hugs)))

Carol

Thank you
Thank you Carol--I will think about trying that drink if he gets better. Right now---and for the last week or so, he can't swallow anything. He can't coordinate his tongue and swallowing muscles. I've learned that swallowing is a complex act and takes a lot of coordination. Liquid is especially hard. That's how he ended up with aspiration pneumonia. They are talking about the necessity of a stomach tube (peg) for hydration, nutrition, and medication. I hate it but I don't want him to starve to death.

This issue is probably not his biggest problem, though.

Please pray for strength for us.

I'm so glad to hear that your son Benjamin continues to do so well!!!!!

Love and blessings,
Cindy