"Marie", has a new primary care "Doctor" now

[Faye Fox]

Marie's asleep on her living room bed, our daughters are outside soaking a little sun in chairs; we're leaving for Marie's Dr. appt. at 2 pm to see what she has to tell us, which I think will be a referral to an oncologist, or something; we'll see. Thanks for all the replies and prayers everyone, and sorry that I'm not too active lately, just very "depressed", at this point, will try keeping y'all posted.

Understandably so Jake. You have some long days of mostly sitting and waiting ahead. Go prepared and take good care of yourself. Y'all are lucky to have each other and daughters that will help when needed. Hugs to you both.

 

[Ed Wilson]

They make donuts for pain in the affected area which might help when sitting.

 

[John Brunner]

There's a great website that carries all sorts of medical supplies and apparatus you won't find on Amazon at really good prices.

Vitality Medical

 

[Jake Smith]

Marie was hurting a lot still this morning, they gave her an ivipropin shot, with something for pain yesterday. took her Tylenol, gabapentin, and ivipropin, earlier this morning; been another painful day, so she been a sleep for a couple hours, and I just check on her and stay quiet to not wake her; since it's only time she seems to not be in pain, W,e went back to her primary Dr yesterday and they put a rush on Oncologist appt., so maybe they will do pet scan I think they calling it, and find what kind and hopefully not aggressive one, I pray and tell us the options about her dealing with this pain. Daughters are outside, and went to Dr with us yesterday, saying they're going with us to Oncologist Dr tomorrow if they set her appt for tomorrow. Thank all of you for posting and caring, don't be offended by not replying to each one, but feel like I'm in a nightmare and can't wake up. Thanks everyone, for "prayers" and caring.

 

[Faye Fox]

Marie was hurting a lot still this morning, they gave her an ivipropin shot, with something for pain yesterday. took her Tylenol, gabapentin, and ivipropin, earlier this morning; been another painful day, so she been a sleep for a couple hours, and I just check on her and stay quiet to not wake her; since it's only time she seems to not be in pain, W,e went back to her primary Dr yesterday and they put a rush on Oncologist appt., so maybe they will do pet scan I think they calling it, and find what kind and hopefully not aggressive one, I pray and tell us the options about her dealing with this pain. Daughters are outside, and went to Dr with us yesterday, saying they're going with us to Oncologist Dr tomorrow if they set her appt for tomorrow. Thank all of you for posting and caring, don't be offended by not replying to each one, but feel like I'm in a nightmare and can't wake up. Thanks everyone, for "prayers" and caring.

Thanks for update Jake.

The fact she hasn't had a PET scan yet, gives me a lot of hope. You said before that she had a CT scan and MRI. Those scans show images of bone, organs and tissues. Using those images to make a cancer diagnosis, while fairly accurate, isn't a solid diagnosis. The PET scan shows how tissues are functioning on a cellular level using radioactive dyes. The differences is the PET scan is a highly accurate way of confirming that localized tumors are cancer plus showing any spread.

I have hope that the PET scan will show no cancer, but rather benign tumors and bone loss due to arthritis. While the chance of this is very very small, it is possible and is certainly my wish for Marie. If cancer, I wish for it to be localized and be fully treatable. Even if metastatic, I hope she can be out of pain and tolerate treatment that will get her into remission.

As my grandmother would say, "mititok oka mahli" which means "may time pass quickly," in her grandmothers native language. That phrase has helped me my entire life to endure long hours and days as both a patient and caretaker. Hugs to you both and may time pass quickly.

 

[Mary Stetler]

I hope no one considers what I post as advice, just information and personal experiences. My hope is that anyone reading it, will take any info they get from anyone here or online and discuss it with their doctor. Don't use it to diagnose yourself and self treat, especially if you have health concerns that can turn serious, with a wrong treatment.

I would hope people do research on any info even from their doctors, at this point. I've done it all my life but also using myself as a guinea pig.

 

[Jake Smith]

Thanks for update Jake.

The fact she hasn't had a PET scan yet, gives me a lot of hope. You said before that she had a CT scan and MRI. Those scans show images of bone, organs and tissues. Using those images to make a cancer diagnosis, while fairly accurate, isn't a solid diagnosis. The PET scan shows how tissues are functioning on a cellular level using radioactive dyes. The differences is the PET scan is a highly accurate way of confirming that localized tumors are cancer plus showing any spread.

I have hope that the PET scan will show no cancer, but rather benign tumors and bone loss due to arthritis. While the chance of this is very very small, it is possible and is certainly my wish for Marie. If cancer, I wish for it to be localized and be fully treatable. Even if metastatic, I hope she can be out of pain and tolerate treatment that will get her into remission.

As my grandmother would say, "mititok oka mahli" which means "may time pass quickly," in her grandmothers native language. That phrase has helped me my entire life to endure long hours and days as both a patient and caretaker. Hugs to you both and may time pass quickly.

Thanks Faye, so far helping her pass the give up stage is my most difficult task yet. And the battle of getting her into Oncologist office has been difficult too. Been spending a lot of time on the phone. hearing their music . Last Saturday we saw a different Dr. since her primary was to busy to see her and new one seemed very caring but put in Oncologist referral and so far due to her being off we can't get her to sign off on referral until she's back at work. Mean time went through referral orthopedic Dr. referral to cancel thinking it was Oncologist one. Daughters calling them too. I asked them not to anymore so not to peee anyone off to where their will continues to go.

Anyway not been online a lot but from mine and Marie's study of this until they call; the Dr's that is, the MRI shows even better view for Oncologist than pet scan so he should be able to tell us a lot after he views it. And since Dr's told us at ER that half tail bone is ate into by cancer and it's mass on S1 and T 12 and that it's cancerous masses, I think the Oncologist will confirm it, and be able to tell where it's coming from and stage and treatments they offer; but Marie is leaning toward getting by which ever way have the less pain. She doesn't do well with meds at all for pain. For instance we have the oxycodone 5 mgs. So we got her to try that to get away from pain for awhile, bottle says 2 a day along with gabapentin, muscle relaxers and with the oxy. But breathing problems gabapentin and scared of side effect with muscle relaxers; so she did 3 oxies throughout the day and was doing better all day, but she woke me at 3am the next morning flying around house cutting every fans, lights and anything else she could cut on freaking totally out, scared the hell out of me, saying I don't feel good I don't feel good then I tried to calm her telling her you will be ok it's the oxy, I've been through before it will pass, just take it easy; held her because she has not been able to move without help for six months and you would not believe as I; how she was flying around as if she was healed from all the adrenalin pumping. I thought this was the end, OMG.

Soon as we can get this referral through, plans are to find out if low doses of morphine will work for her; because after researching meds, they say it works better with older seniors and people with copd metal anxiety problems. Wish us luck with prayers, we need it. I'll try to keep y'all posted as best I can and understand; I don't hardly get online much anymore.

Also she's allergic to contrast dye too.

 

[Beth Gallagher]

Thanks for the update, Jake. I know y'all are going through a very tough time right now and I hope you can get the oncologist appointment soon.

In my experience, the PET scan was simply to see whether the cancer has metastasized to other parts of my body. I had a PET well after I was diagnosed and treatment started, so in my case the PET was not a diagnostic tool because I was already diagnosed. Each patient and each doctor is different, though.

We all totally understand that Marie is suffering and you are also suffering and worried, so don't worry or apologize about not being online. Just know that we are all thinking about you both and hoping for the best for y'all. I know you feel like you are living in a nightmare and just want to wake up.

 

[Faye Fox]

Thanks Faye, so far helping her pass the give up stage is my most difficult task yet. And the battle of getting her into Oncologist office has been difficult too. Been spending a lot of time on the phone. hearing their music . Last Saturday we saw a different Dr. since her primary was to busy to see her and new one seemed very caring but put in Oncologist referral and so far due to her being off we can't get her to sign off on referral until she's back at work. Mean time went through referral orthopedic Dr. referral to cancel thinking it was Oncologist one. Daughters calling them too. I asked them not to anymore so not to peee anyone off to where their will continues to go.

Anyway not been online a lot but from mine and Marie's study of this until they call; the Dr's that is, the MRI shows even better view for Oncologist than pet scan so he should be able to tell us a lot after he views it. And since Dr's told us at ER that half tail bone is ate into by cancer and it's mass on S1 and T 12 and that it's cancerous masses, I think the Oncologist will confirm it, and be able to tell where it's coming from and stage and treatments they offer; but Marie is leaning toward getting by which ever way have the less pain. She doesn't do well with meds at all for pain. For instance we have the oxycodone 5 mgs. So we got her to try that to get away from pain for awhile, bottle says 2 a day along with gabapentin, muscle relaxers and with the oxy. But breathing problems gabapentin and scared of side effect with muscle relaxers; so she did 3 oxies throughout the day and was doing better all day, but she woke me at 3am the next morning flying around house cutting every fans, lights and anything else she could cut on freaking totally out, scared the hell out of me, saying I don't feel good I don't feel good then I tried to calm her telling her you will be ok it's the oxy, I've been through before it will pass, just take it easy; held her because she has not been able to move without help for six months and you would not believe as I; how she was flying around as if she was healed from all the adrenalin pumping. I thought this was the end, OMG.

Soon as we can get this referral through, plans are to find out if low doses of morphine will work for her; because after researching meds, they say it works better with older seniors and people with copd metal anxiety problems. Wish us luck with prayers, we need it. I'll try to keep y'all posted as best I can and understand; I don't hardly get online much anymore.

Also she's allergic to contrast dye too.

Many thanks for the update, Jake. It sounds as though you are right on with your assessment of the MRI based on several doctors assessments. I can't imagine her pain both physical and mental. I hope you can get her on morphine soon. I had to have it once in order to bear excruciating pain. I do caretaking for a friend and it can be trying. Keep yourself as well as possible, Jake. Update us when you can. This all makes me cry, Jake.

 

[Marie Miller]

Jake have you updated her medical doctors about the episode she had after 3 oxy?

 

[Jake Smith]

Thanks for the update, Jake. I know y'all are going through a very tough time right now and I hope you can get the oncologist appointment soon.

In my experience, the PET scan was simply to see whether the cancer has metastasized to other parts of my body. I had a PET well after I was diagnosed and treatment started, so in my case the PET was not a diagnostic tool. Each patient and each doctor is different, though.

We all totally understand that Marie is suffering and you are also suffering and worried, so don't worry or apologize about not being online. Just know that we are all thinking about you both and hoping for the best for y'all. I know you feel like you are living in a nightmare and just want to wake up.

Thanks, Beth you some it up well a nightmare. Was going to log out; and Marie said don't log out yet they're not thinking you sitting there with you're tongue hanging out. lol I use to tell all the time I'm not going to sit there online like my tongue hanging out.

 

[Jake Smith]

Many thanks for the update, Jake. It sounds as though you are right on with your assessment of the MRI based on several doctors assessments. I can't imagine her pain both physical and mental. I hope you can get her on morphine soon. I had to have it once in order to bear excruciating pain. I do caretaking for a friend and it can be trying. Keep yourself as well as possible, Jake. Update us when you can. This all makes me cry, Jake.

Thanks, Faye and trying to keep well; lack of sleep is the worst. And it's broke me down a couple times trying not to cry.

 

[Jake Smith]

Jake have you updated her medical doctors about the episode she had after 3 oxy?

Not yet until we get to see another but have told the referral dept. and everyone else I've talked to, she just sticking to the Tylenol now until we get back to her pain mgn Dr. Monday she has an appt. there. She needs off Tylenol too, it's been 6 mo now and only thing she can get any relief with so far without side effects.

 

[Krystal Shay]

Thanks for the update, Jake. You both have been on my mind so much. Take care of yourselves.

 

[Beth Gallagher]

Thanks, Faye and trying to keep well; lack of sleep is the worst. And it's broke me down a couple times trying not to cry.

Cry all you need to, Jake. When I was first diagnosed I'd sit in the bathtub with water running and do the "ugly cry" so my husband couldn't see me. I think it's good to just let go for a little while.

 

[Beth Gallagher]

Thanks, Beth you some it up well a nightmare. Was going to log out; and Marie said don't log out yet they're not thinking you sitting there with you're tongue hanging out. lol I use to tell all the time I'm not going to sit there online like my tongue hanging out.

Sounds like Marie still has her sense of humor!! Give her a hug for us.

 

[Connie Bennett]

@Jake Smith please know my thoughts and prayers are with you and Marie

If she can handle the morphine, that is what my husband had when the pain got to be unbearable. He waited a very, very long time before he finally said he would take the morphine IV drips. They did help him.

 

[Marie Miller]

Thanks, Faye and trying to keep well; lack of sleep is the worst. And it's broke me down a couple times trying not to cry.

Jake, you can do it! Pull in your whole support system from family, friends, church to forum. Ask for help! Can someone spend the night every couple of days? Have a question list ready for appointments. Add phone calls. Did they get added to her chart? What support can you expect as in household, patient care, transport, equipment?

 

[Tony Page]

Thanks, Faye and trying to keep well; lack of sleep is the worst. And it's broke me down a couple times trying not to cry.

Jake,

Thinking and praying for you and Marie. Let the tears flow, crying is good way to get some relief. When I first read the post about Marie's illness, honestly I cried as I was replying. I couldn't stop it, so I started praying.

Keep positive thoughts and love your heart

Tony