Pray for John and Adrian

John, So sorry to hear you
John, So sorry to hear you are in such pain. My thoughts are with you + Adrian. I hope you feel better soon!

Adrian and John
You are in my prayers. I need to make it to SF to see your heart. Where in downtown? Union Square park in front of Macy's? I'm in Palo Alto if I can be of ANY help. Marie

dianetavegia said:

Can't remember
I can't remember if Adrian openly posted a link to John's Caring Bridge site so I didn't want to do that. It's a LONG post with lots of info about what he's tried and what's been recommended.

Do you remember if it was posted previously? I tried searching...

Don' know
I dont' know if he "openly posted" his caring bridge site but I have it in my favorites, along with several others, and check it regularly. I got it off this site but I just know remember when. Tina

dianetavegia said:

Whoops,
The heart is 400 lbs
Whoops,
The heart is 400 lbs and 5 feet across.

thank you!
Dear Diane and all the rest of you,

Thank you for your prayers and good wishes! We haven't posted the CaringBridge site publicly here because of some concerns about lurkers, spam, etc. If you'd like the address, though, just send Adrian or me a PM and we'll send the link. I've pasted the update below. Thanks again. You guys are all helping me feel pretty good today!

Dear Friends,

Since I haven’t updated the journal for a while, many of you have written with hopes that no news is good news. I wish that were true, but the last nerve block effectively relieved pain for less than 24 hours and the pain has continued to get worse. In the last few days, though, I’ve been meeting with my doctors and we have a new plan for pain relief. Adrian and I are both feeling good about it.

1.I will start taking a new non-narcotic drug for pain relief, Cymbalta. Cymbalta was originally designed as an antidepressant and because I was concerned about drugs that may cause mood and behavior changes I had resisted taking it for a while. I talked with an expert I trust yesterday, though, and he assures me that it is the best drug for neuropathic pain relief and that it will not cause mood and behavior changes. It will take several weeks before I begin to feel effects, and I’ll keep you posted. Let’s hope it works!

2. I have an appointment on April 6 to meet with a hypnotherapist for pain relief. His name is David Spiegel, a psychiatrist who has written a textbook on hypnosis as medical treatment (some of it is available online and it’s interesting). He’s also Director of the Stanford Institute for Integrative Medicine and the people I’ve talked with about him say he’s superb. I already use some self-taught visualization techniques and they work, so I think hypnosis will be an effective tool for me. (I met a few weeks ago with someone to teach me biofeedback and didn’t feel good about the meeting. I see that biofeedback may offer help, and I may give it another try with another teacher.)

3. The doctor I consult with at the pain clinic referred me to an acupuncturist (an anesthesiologist at Stanford Hospital) and I’ll make an appointment with her to see what acupuncture can do.

4. I have another nerve block currently scheduled for April 14, but I may cancel it. The previous nerve blocks have left some side effects that include numb skin and reduced muscle tone. These effects will diminish with time, but for previous nerve blocks we have just used numbing drugs and steroids; the April 16 nerve block will kill the nerve and any side effects will be permanent. (The first nerve block did last for about 2 weeks, though, with about 50% pain reduction, so there is some potential there.)

5. I will have some diagnostic tests and appointments to identify the causes of the pain. Possibilities include further tumor growth at the sacrum, ongoing radiation damage, and lingering effects from the nerve blocks. Identifying the causes will help us treat the pain.

6. In the meantime the pain is severe and I have really reduced the times I leave the house. It’s much easier to control the pain at home. The garden is looking good, though, and I love to have visitors and show it off. The doorbell is working again, so feel free to call or just to stop by. If it’s not a good time, we’ll say so, but we love having people stop by.

Thanks to you all for so many things you do that make Adrian and me feel good. Every day we know in our bones how fortunate we are to have such loving and caring friends.

John

johnsfo said:

thank you!
Dear Diane and all the rest of you,

Thank you for your prayers and good wishes! We haven't posted the CaringBridge site publicly here because of some concerns about lurkers, spam, etc. If you'd like the address, though, just send Adrian or me a PM and we'll send the link. I've pasted the update below. Thanks again. You guys are all helping me feel pretty good today!

Dear Friends,

Since I haven’t updated the journal for a while, many of you have written with hopes that no news is good news. I wish that were true, but the last nerve block effectively relieved pain for less than 24 hours and the pain has continued to get worse. In the last few days, though, I’ve been meeting with my doctors and we have a new plan for pain relief. Adrian and I are both feeling good about it.

1.I will start taking a new non-narcotic drug for pain relief, Cymbalta. Cymbalta was originally designed as an antidepressant and because I was concerned about drugs that may cause mood and behavior changes I had resisted taking it for a while. I talked with an expert I trust yesterday, though, and he assures me that it is the best drug for neuropathic pain relief and that it will not cause mood and behavior changes. It will take several weeks before I begin to feel effects, and I’ll keep you posted. Let’s hope it works!

2. I have an appointment on April 6 to meet with a hypnotherapist for pain relief. His name is David Spiegel, a psychiatrist who has written a textbook on hypnosis as medical treatment (some of it is available online and it’s interesting). He’s also Director of the Stanford Institute for Integrative Medicine and the people I’ve talked with about him say he’s superb. I already use some self-taught visualization techniques and they work, so I think hypnosis will be an effective tool for me. (I met a few weeks ago with someone to teach me biofeedback and didn’t feel good about the meeting. I see that biofeedback may offer help, and I may give it another try with another teacher.)

3. The doctor I consult with at the pain clinic referred me to an acupuncturist (an anesthesiologist at Stanford Hospital) and I’ll make an appointment with her to see what acupuncture can do.

4. I have another nerve block currently scheduled for April 14, but I may cancel it. The previous nerve blocks have left some side effects that include numb skin and reduced muscle tone. These effects will diminish with time, but for previous nerve blocks we have just used numbing drugs and steroids; the April 16 nerve block will kill the nerve and any side effects will be permanent. (The first nerve block did last for about 2 weeks, though, with about 50% pain reduction, so there is some potential there.)

5. I will have some diagnostic tests and appointments to identify the causes of the pain. Possibilities include further tumor growth at the sacrum, ongoing radiation damage, and lingering effects from the nerve blocks. Identifying the causes will help us treat the pain.

6. In the meantime the pain is severe and I have really reduced the times I leave the house. It’s much easier to control the pain at home. The garden is looking good, though, and I love to have visitors and show it off. The doorbell is working again, so feel free to call or just to stop by. If it’s not a good time, we’ll say so, but we love having people stop by.

Thanks to you all for so many things you do that make Adrian and me feel good. Every day we know in our bones how fortunate we are to have such loving and caring friends.

John

Oh John- I can't stand the
Oh John- I can't stand the pain part, could hardly even read it in your note. God, I hope and pray they find something to help! *fingers and toes crosssed*

johnsfo said:

thank you!
Dear Diane and all the rest of you,

Thank you for your prayers and good wishes! We haven't posted the CaringBridge site publicly here because of some concerns about lurkers, spam, etc. If you'd like the address, though, just send Adrian or me a PM and we'll send the link. I've pasted the update below. Thanks again. You guys are all helping me feel pretty good today!

Dear Friends,

Since I haven’t updated the journal for a while, many of you have written with hopes that no news is good news. I wish that were true, but the last nerve block effectively relieved pain for less than 24 hours and the pain has continued to get worse. In the last few days, though, I’ve been meeting with my doctors and we have a new plan for pain relief. Adrian and I are both feeling good about it.

1.I will start taking a new non-narcotic drug for pain relief, Cymbalta. Cymbalta was originally designed as an antidepressant and because I was concerned about drugs that may cause mood and behavior changes I had resisted taking it for a while. I talked with an expert I trust yesterday, though, and he assures me that it is the best drug for neuropathic pain relief and that it will not cause mood and behavior changes. It will take several weeks before I begin to feel effects, and I’ll keep you posted. Let’s hope it works!

2. I have an appointment on April 6 to meet with a hypnotherapist for pain relief. His name is David Spiegel, a psychiatrist who has written a textbook on hypnosis as medical treatment (some of it is available online and it’s interesting). He’s also Director of the Stanford Institute for Integrative Medicine and the people I’ve talked with about him say he’s superb. I already use some self-taught visualization techniques and they work, so I think hypnosis will be an effective tool for me. (I met a few weeks ago with someone to teach me biofeedback and didn’t feel good about the meeting. I see that biofeedback may offer help, and I may give it another try with another teacher.)

3. The doctor I consult with at the pain clinic referred me to an acupuncturist (an anesthesiologist at Stanford Hospital) and I’ll make an appointment with her to see what acupuncture can do.

4. I have another nerve block currently scheduled for April 14, but I may cancel it. The previous nerve blocks have left some side effects that include numb skin and reduced muscle tone. These effects will diminish with time, but for previous nerve blocks we have just used numbing drugs and steroids; the April 16 nerve block will kill the nerve and any side effects will be permanent. (The first nerve block did last for about 2 weeks, though, with about 50% pain reduction, so there is some potential there.)

5. I will have some diagnostic tests and appointments to identify the causes of the pain. Possibilities include further tumor growth at the sacrum, ongoing radiation damage, and lingering effects from the nerve blocks. Identifying the causes will help us treat the pain.

6. In the meantime the pain is severe and I have really reduced the times I leave the house. It’s much easier to control the pain at home. The garden is looking good, though, and I love to have visitors and show it off. The doorbell is working again, so feel free to call or just to stop by. If it’s not a good time, we’ll say so, but we love having people stop by.

Thanks to you all for so many things you do that make Adrian and me feel good. Every day we know in our bones how fortunate we are to have such loving and caring friends.

John

John,
Thanks for taking the
John,

Thanks for taking the time to post here. I am so sorry you have this pain to deal with, but it sounds like you have been very proactive + are consulting with many specialists to find the right type of pain relief for you. Good luck, I hope that you find something very soon to relieve that pain. Both you + Adrian are in my thoughts.

Fight for my love said:

You are in my prayers.Hope
You are in my prayers.Hope the pain will be under control soon.Take care.

So sorry
So sorry that you are in so much pain! I hope you feel better soon!!!

johnsfo said:

thank you!
Dear Diane and all the rest of you,

Thank you for your prayers and good wishes! We haven't posted the CaringBridge site publicly here because of some concerns about lurkers, spam, etc. If you'd like the address, though, just send Adrian or me a PM and we'll send the link. I've pasted the update below. Thanks again. You guys are all helping me feel pretty good today!

Dear Friends,

Since I haven’t updated the journal for a while, many of you have written with hopes that no news is good news. I wish that were true, but the last nerve block effectively relieved pain for less than 24 hours and the pain has continued to get worse. In the last few days, though, I’ve been meeting with my doctors and we have a new plan for pain relief. Adrian and I are both feeling good about it.

1.I will start taking a new non-narcotic drug for pain relief, Cymbalta. Cymbalta was originally designed as an antidepressant and because I was concerned about drugs that may cause mood and behavior changes I had resisted taking it for a while. I talked with an expert I trust yesterday, though, and he assures me that it is the best drug for neuropathic pain relief and that it will not cause mood and behavior changes. It will take several weeks before I begin to feel effects, and I’ll keep you posted. Let’s hope it works!

2. I have an appointment on April 6 to meet with a hypnotherapist for pain relief. His name is David Spiegel, a psychiatrist who has written a textbook on hypnosis as medical treatment (some of it is available online and it’s interesting). He’s also Director of the Stanford Institute for Integrative Medicine and the people I’ve talked with about him say he’s superb. I already use some self-taught visualization techniques and they work, so I think hypnosis will be an effective tool for me. (I met a few weeks ago with someone to teach me biofeedback and didn’t feel good about the meeting. I see that biofeedback may offer help, and I may give it another try with another teacher.)

3. The doctor I consult with at the pain clinic referred me to an acupuncturist (an anesthesiologist at Stanford Hospital) and I’ll make an appointment with her to see what acupuncture can do.

4. I have another nerve block currently scheduled for April 14, but I may cancel it. The previous nerve blocks have left some side effects that include numb skin and reduced muscle tone. These effects will diminish with time, but for previous nerve blocks we have just used numbing drugs and steroids; the April 16 nerve block will kill the nerve and any side effects will be permanent. (The first nerve block did last for about 2 weeks, though, with about 50% pain reduction, so there is some potential there.)

5. I will have some diagnostic tests and appointments to identify the causes of the pain. Possibilities include further tumor growth at the sacrum, ongoing radiation damage, and lingering effects from the nerve blocks. Identifying the causes will help us treat the pain.

6. In the meantime the pain is severe and I have really reduced the times I leave the house. It’s much easier to control the pain at home. The garden is looking good, though, and I love to have visitors and show it off. The doorbell is working again, so feel free to call or just to stop by. If it’s not a good time, we’ll say so, but we love having people stop by.

Thanks to you all for so many things you do that make Adrian and me feel good. Every day we know in our bones how fortunate we are to have such loving and caring friends.

John

Sorry
I'll be praying for relief from all that pain.

*hugs*
Gail

John
I sure hope you get some relief soon. Sending prayers and good vibes. Cymbalta is good and it has worked for me in the past. I was taking about 120 mg a day. I am now back on it at a lower dosage for depression and I am hoping it works as well for that. Take care my friends...*HUGS*

Beth