Community Chat

[JustJules]

I tried to respond and it said the discussion was no longer active. Not sure why... so here is my response.

I typed out a long response to you in the other thread, and got that message that the commenting period was closed. I assumed that meant for all threads. Anyway, I'll try again. The cancer my father has is very different than what your dad has, so I don't think it is fair to make comparisons or suggest treatments. My father is also about 20 or 25+ years older than your dad, he will be 89 soon, God willing. The cancer my dad has started as basic prostate cancer, which should not have been a big deal, but he put off treatment even when he knew his PSA levels were high. The doctor could only suggest his treatment, he ignored that advice. I knew nothing of this at the time. My dad says he put off his own treatment because he was focused on caring for my mother, who had gone through a mastectomy for breast cancer. I came back to care for her, but again, my dad never shared what was going on with him. My mom was 78 at the time, it took a huge toll on her, even though she recovered from the breast cancer. Her health declined, and she died only a few years later from immunity complications. Anyway, my dad neglected his health, knowing he had issues. So, last year or a little over, we addressed it, he finally got the biopsy and of course it was raging cancer, his PSA levels were off the charts. At his age and surgery was not an option, but thankfully there was a new prostate treatment, an injection called Lupron. It's duration is about 6 months. After the first 6 months, his PSA levels were declined, so they did it again. His follow ups were good news, although his bladder was worn out in the process, and he is now on a permanent catheter that needs to be changed every 6 weeks. He has learned to deal with it, and he or I have to empty it numerous times each day, but he had a "lazy bladder" and without it, his urine would back up and cause him pain. He gets frustrated that not all his parts are functioning anymore. So, we thought we made huge progress tackling the prostate cancer, but unfortunately he had waited too long for treatment. He was having back pain and issues, and an MRI and scans showed that he has a cancerous lesion on his spine. It spread from the prostate cancer. Right now we are in the midst of wondering what the next step might be. He had a doctor appointment today, he goes for another MRI tomorrow, and depending on those results we will seek appropriate treatment. Surgery is no longer an option for him considering his weak health and age. His doctor has said that best case, they can do spot radiation treatment. Personally, I think they have put off addressing this issue with him because of his age. He has had lumbar injections for his back pain, but that is only temporary cure for something growing and getting worse in him. His experience has been different, he still has an appetite, although not what it used to be. Two years ago, he was on NO prescription meds... now he is on so many meds that it is hard to keep track of them all. Makes me sad. Of course the meds change his system, so then there is the fun of dealing with constipation and trying to adjust for that. He has been retaining fluid, his ankles and feet and calves have been all swollen, so the doctor is doing lab work to figure that out. It's one thing after another, yet he keeps positive. He is my dad, the only one I have, my world... I would do anything to keep him well and happy. Right now, the Parkinson's is manageable with his meds, I am more concerned about the cancerous lesion in his spine. I don't know what kind of treatment they can offer him that would cure him without making him worse.

So Mistri, I guess that is my experience with his cancer, and my very verbose way of saying I have no suggestions for your dad's experience. Sadly, it seems your father's cancer is more advanced and aggressive than what my dad has. I do keep him in my prayers and I think you are very wise to educate yourself and be involved. Doctors don't have all the answers, and I have found that I need to ask and provoke at times, and not settle for the basics. I don't know what the results from tomorrow's MRI will be, I can only hope for the best. Whatever comes back, we will deal with it as best we can. The only thing I don't want for my father is pain. Right now he is old, and slow, and he realizes his mind is not as clear, and he can't do the things he wants to do, but he isn't in a constant pain. I hope that day never comes. Anyway, I have no animosity towards you, and I am very empathetic about your situation. Anger is such a draining emotion... and it is easy to be angry when your loved ones are suffering. I often think I am alone, but then I read about other people here and their experiences, and I realize I am not. Not sure if anything I said was beneficial whatsoever, but it's late, and I'm exhausted, and it's the best I could do for now.

[mistriTsquirrel]

I have to apologize to you, Jules...because I began to suspect you were not telling the truth after some of the interactions we've had.

The first thing that made me wonder was when my father learned he was terminally ill, you told me to "get over it." I wondered how you could possibly have a terminally ill father and say that to someone.

Also, I wondered why you had never mentioned what type of cancer he had, even though you were open about his Parkinson's. As is turns out, my father may have Parkinson's as well--as his mother does--but no one really cares at this point, since he is unlikely to live much longer.

I have to take my dad to chemo for his second course of treatment, and the information I'm getting about the drugs they are using is varied (regarding peoples' experiences). All I have been able to do is buy him something my friend found helpful for nausea during her chemo.

I am scared that he will start vomiting and his tumor will open up and he will bleed to death.

And I'm scared my mother cannot handle this, and I will be taking care of both of them and trying to hold onto a job.

Once again, I apologize for not believing you...but when you told me to get over it when I had only had a week to digest the fact that my father was terminally ill, I thought for sure that you couldn't possibly know how I felt.

[JustJules]

On 1/13/2014 mistriTsquirrel said:

I have to apologize to you, Jules...because I began to suspect you were not telling the truth after some of the interactions we've had.

The first thing that made me wonder was when my father learned he was terminally ill, you told me to "get over it." I wondered how you could possibly have a terminally ill father and say that to someone.

Also, I wondered why you had never mentioned what type of cancer he had, even though you were open about his Parkinson's. As is turns out, my father may have Parkinson's as well--as his mother does--but no one really cares at this point, since he is unlikely to live much longer.

I have to take my dad to chemo for his second course of treatment, and the information I'm getting about the drugs they are using is varied (regarding peoples' experiences). All I have been able to do is buy him something my friend found helpful for nausea during her chemo.

I am scared that he will start vomiting and his tumor will open up and he will bleed to death.

And I'm scared my mother cannot handle this, and I will be taking care of both of them and trying to hold onto a job.

Once again, I apologize for not believing you...but when you told me to get over it when I had only had a week to digest the fact that my father was terminally ill, I thought for sure that you couldn't possibly know how I felt.

Thanks for your apology, and I apologize for any misunderstandings. I honestly do not recall ever telling you to "get over it" pertaining to your father's diagnosis. That is not something I would do. Perhaps you misunderstood me, and I think early on in our exchanges I did make some reference about getting over your depression, because I had suffered a huge spell of depression after the death of my mother. But, again, through some of our discussions, your experience with depression was different than what triggered mine, and I was wrong to seem not sympathetic. I truly don't recall ever thinking you should "get over it" regarding your father's illness, and I apologize if you thought that is what I meant. I would not or could not ever be so heartless. Everyone's journey with cancer is unique, so I cannot pretend to know how you are feeling, but I know how I feel, and it's a pretty frustrating path. Again, sorry for the misunderstandings.

[dooBdoo]

I’ve seen a number of previous posts, and decided to add my view knowing it’s only my personal perception.

Both of you are highly articulate, intelligent, knowledgeable, passionate, and under extreme stress. You’re in a situation in which someone you deeply love is involved in the fight of their life, literally. You’re both in pain, your heart aches, your soul cries out, you’re both in a struggle which most of the time may leave you feeling helpless, empty and alone.

The written word is pitifully inadequate for complex conversation, even in the best of circumstances. Written discussions with people we know in real life, in email messages, Facebook conversations, etc., still can generate untended hurt feelings and spiraling misinterpretations. Add to that the fact that we have here a mode of communication in which, of necessity, a moderator removes posts and issues are sometimes never resolved… and bad feelings carry forward, damaged, unhealed and unchecked.

My guess is that you could be powerful allies in this journey you’re walking if only you could talk without the constraints of the forums and the added views of other posters (ok, yes, me included). Even when we decide to add our experience to a dialogue between two posters, sometimes it can become interference or an unnecessary diversion instead of the intended helping hand.

You are not alone, you truly are not alone. I hope you can find a way to join forces and become part of one another's extended support team. I’m sending my prayers and positive energy to you, to your dear fathers, and to their medical teams. I know many others here are doing the same.

(((Cyber hugs to you both.)))

[JustJules]

Thanks dooBdoo, you're a wise and cool chick! Best advice I've heard all day!

[dooBdoo]

On 1/14/2014 Jules5280 said:

Thanks dooBdoo, you're a wise and cool chick! Best advice I've heard all day!

Thanks, Jules. You and mistri have been kind and compassionate to me, offering comfort and sound advice. Something I appreciated and needed. My heart goes out to you both.

[mistriTsquirrel]

On 1/14/2014 Jules5280 said:

On 1/13/2014 mistriTsquirrel said:

I have to apologize to you, Jules...because I began to suspect you were not telling the truth after some of the interactions we've had.

The first thing that made me wonder was when my father learned he was terminally ill, you told me to "get over it." I wondered how you could possibly have a terminally ill father and say that to someone.

Also, I wondered why you had never mentioned what type of cancer he had, even though you were open about his Parkinson's. As is turns out, my father may have Parkinson's as well--as his mother does--but no one really cares at this point, since he is unlikely to live much longer.

I have to take my dad to chemo for his second course of treatment, and the information I'm getting about the drugs they are using is varied (regarding peoples' experiences). All I have been able to do is buy him something my friend found helpful for nausea during her chemo.

I am scared that he will start vomiting and his tumor will open up and he will bleed to death.

And I'm scared my mother cannot handle this, and I will be taking care of both of them and trying to hold onto a job.

Once again, I apologize for not believing you...but when you told me to get over it when I had only had a week to digest the fact that my father was terminally ill, I thought for sure that you couldn't possibly know how I felt.

Thanks for your apology, and I apologize for any misunderstandings. I honestly do not recall ever telling you to "get over it" pertaining to your father's diagnosis. That is not something I would do. Perhaps you misunderstood me, and I think early on in our exchanges I did make some reference about getting over your depression, because I had suffered a huge spell of depression after the death of my mother. But, again, through some of our discussions, your experience with depression was different than what triggered mine, and I was wrong to seem not sympathetic. I truly don't recall ever thinking you should "get over it" regarding your father's illness, and I apologize if you thought that is what I meant. I would not or could not ever be so heartless. Everyone's journey with cancer is unique, so I cannot pretend to know how you are feeling, but I know how I feel, and it's a pretty frustrating path. Again, sorry for the misunderstandings.

Actually, another poster posted what the two of us said during that exchange, as she had copied and saved it...but it is now poofed...which is fine...but you told me my dad is not the only human on the planet diagnosed with stage IV cancer, and I should get over it. After that, I stated that it had only been a week since his stage IV diagnosis, and I had not had time to get over it, and I called you a heap of nothing.

My dad retired in July, was told he has cancer in August, and was told he is stage IV in September. After a bone biopsy came back negative, my parents prayed for a miracle...that the spot on his femur would not be cancer, that it would be a mistake. The last PET scan was on the 20th. The follow-up appointment was on Dec. 30. Since I had the flu, I could not go (I was allowed to be in my parents house, but not within 10 feet of my father, and only with an ear-loop mask on). Fortunately, my brother stayed in town an extra day. I warned him that the doctors were going to shatter our parents' hopes and dreams at that appointment, and that he would probably have to prop them both up, so to speak. I was home when my parents and brother got back. I wasn't supposed to hug my dad, but I walked up behind him, put my arms around him, told him I love him, and silently cried. My brother sobbed, and my mom stood there, looking helpless with red, teary eyes. My dad did not cry...he walked into the next room, sat down in front of the computer and started playing solitaire.

Not only is the tumor in my father's femur larger, but the cancer has traveled to his sternum. The first course of chemo, which had seemed easy for him to tolerate, had done nothing to stop the cancer from spreading. I knew the cancer would still be in his femur, but I didn't count on it spreading elsewhere so quickly. Now he is going for a second round.

People who have 5FU and oxaliplatin for colon cancer have said it was tolerable...but people who have had it for esophageal cancer have told me it was worthy of the name "FU." I have been warned that he may not make it through this chemo...and I am not ready. He is only 66 years old, and he doesn't seem that sick yet...but I know he is. Sometimes I ask him how he is feeling, and he says he feels fine. The other day I asked him if he's been having any weird dreams and he said, "nope." I asked him what he takes to get to sleep, and he says, "nothing." Maybe he is trying not to alarm me...but his answers alarm me...and my mother does not get out of bed much, despite the fact that she is no longer on Coumadin and could get another blood clot at any time...she even gave me instructions in case she should die before my father. In the back of her head, I think she also wonders if maybe she still has cancer in her body too (they found cancer when they removed her thyroid earlier this year).

I don't know why I'm still typing this; it is late, and I need to drive my father to chemo tomorrow...then my mother and I will be attending a grief class at hospice, if I can get her out of bed.

[JustJules]

Mistri, I am so very sorry. However, telling you that your father isn't the only person to be diagnosed with cancer is far from telling you to get over it. You say someone had proof that is now poofed. I believe I said your dad isn't the only one with cancer, but I don't believe I ever would tell you to "get over it" based on my situation. If I did, would love to see proof, and must have been out of my mind. Regardless, I no longer want to debate or argue semantics with you. I have true compassion for what you are experiencing. Tomorrow you take your dad to chemo, I take mine for a catheter change and an MRI. You have much on your plate. Like dooBdoo suggested, we should be comrades, not enemies. I hope that whatever has been exchanged in our past can be in our past, and that we can start fresh. I truly do have compassion and care for you and your family. I understand what you are facing, although not identical, the result is the same. I hope you get some rest, and I will say prayers for you tonight, hoping that you find strength to get through your day tomorrow. Your dad needs your strength and love. I wish I had something comforting to say, but I just don't...

[mistriTsquirrel]

Thank you, dooBdoo.

I think of you often, and my heart aches for you. I hope that you are doing a little bit better each day, though I'll bet you have some pretty bad days sometimes. Please know that there are people here on the boards who are thinking about you and wishing you the best.

You are a kind and caring person, and you deserve the best life has to offer; I wish your hurts could be fixed with kind words...but I also know that none of us are/will be the same after our losses...and I believe that we can find some sort of purpose in what seems so senseless.

I am admittedly not as kind-hearted as you are--as my words on this board have shown--but I'm hoping that I can use what I know now and turn it into something good. I hope all 3 of us can do that when we are able.

[mistriTsquirrel]

On 1/14/2014 Jules5280 said:

Mistri, I am so very sorry. However, telling you that your father isn't the only person to be diagnosed with cancer is far from telling you to get over it. You say someone had proof that is now poofed. I believe I said your dad isn't the only one with cancer, but I don't believe I ever would tell you to "get over it" based on my situation. If I did, would love to see proof, and must have been out of my mind. Regardless, I no longer want to debate or argue semantics with you. I have true compassion for what you are experiencing. Tomorrow you take your dad to chemo, I take mine for a catheter change and an MRI. You have much on your plate. Like dooBdoo suggested, we should be comrades, not enemies. I hope that whatever has been exchanged in our past can be in our past, and that we can start fresh. I truly do have compassion and care for you and your family. I understand what you are facing, although not identical, the result is the same. I hope you get some rest, and I will say prayers for you tonight, hoping that you find strength to get through your day tomorrow. Your dad needs your strength and love. I wish I had something comforting to say, but I just don't...

Alright. All I can say is that I saw the thing posted tonight. The person who posted it scolded me for my interactions with you, and I said, "hey, wait a minute." She said she knew what I was talking about because she had saved it before the whole "Bed Jackets" thread went poof. However, even though she had that saved quote, she still felt like I was "getting what I deserve," because I kept fighting with you, and she pretty much said she was done sticking up for me.

For the most part, I'm keen on fighting when I'm worn out from trying not to. I've posted to you in ways that I thought would be seen as supportive, and they were not seen that way. I've also posted things I thought were innocuous, only to find out that I was thought to be deliberately provoking an argument. I just gave up.

I don't see a point in being enemies...but my olive branch has taken a beating.