Update & Thanks

Joefnh · Post by **Joefnh** » Thu Aug 09, 2012 10:59 am

First I need to say thank you for all the well wishes, it truly felt like a big hug...yesterday when I wrote that note I was in a bit of shock and not thinking through how that note would sound. In reading that today I realize how 'down' it sounded. What I meant to say is that I may be away for a while and,not posting much...of course when you mention the C word, everything changes. I was not thinking clearly yesterday.

Thanks again for your very kind notes and phone calls

Yesterday at the doctors office after the word cancer was mentioned, you could have said I won the lottery and I would not have heard it. I actually do not even remember driving home at all, I was on autopilot and wrote that note after only being home for about a half hour, I should have waited a bit.

Well I'm home now after the biopsy and that was not 'too bad', no fun certainly, but they do sedate you quite a bit and it was comfortable so to speak...it probably hurt I just didn't care LOL. After I woke up a bit more I did get to talk to the doctor some more and while he may have mentioned it yesterday, I did not hear that there is a reasonable chance that this is also just a type a giant cell cyst or potentially damage that is left over from a previous infection.

I was lucky that the new facility of Dartmouth Hitchcock (same place you and I see Dr Nagri at Nancy) now has these outpatient services, apparently the wait at the local hospitals for a biopsy can be up to a couple of weeks.

The different imaging modes do help in making the determination but even given all of that, the only way to tell is to get a piece of it under a microscope. While they are quite careful NOT to make guesses or quote odds at this point, he was optimistic.

Now onto the fun techy stuff that a geek loves, they did give me a full set of the latest MRI scans from last week and the software to view them on my PC and the doctor emailed me the images we used to talk about this yesterday with his annotations on them.

Since they are so cool I thought I would share these.

Here is the scans of the lumbar region of the back taken from the side and these are a cross-section taken evenly down the middle of the spine that shows where both issues are. The darker segments are the discs and the lighter colored rectangular segments are the vertebrae.

The green arrows point to what they call Rommas signs (is that name correct Polly?) these brighter corners are indicative of inflammation that's due to anklyosing spondylitis

The yellow arrow shows the area they are checking for cancer.

This image is a slice through the same region but it's taken horizontally like you are looking down from the top of the spine. The yellow arrow points to the region and shows how deep into the bone of the vertebrae the damage extends

kitty16 · Post by **kitty16** » Thu Aug 09, 2012 12:13 pm

Hi Joe,

I'm so glad to hear you sound like your old, positive self. I will still continue to send you many prayers and good thoughts. Doctors love to tell you everything it COULD be then send you on your way, scared, dazed and confused.

Feel better soon.

Hugs,
K

nancyl · Post by **nancyl** » Thu Aug 09, 2012 3:00 pm

Joe,
I prayed so hard last night and this morning I had to take a nap it just tired me right out. LOL I think all the prayers everyone is sending your way is bound to help. So happy to hear you sounding more like yourself. If anyone has ever heard cancer (and I have), knows exactly what you were going through. Let's hope that whatever it is can be easily treated.

I just want you to know that if you need anything, even just a visit and cookie delivery, that we will be there in a heartbeat. Ted would love to have some Nestle time too.

Please keep us posted.

Nancy

brandy · Post by **brandy** » Thu Aug 09, 2012 3:24 pm

Hi Joe,

Well I did not have time to post yesterday but I prayed for you yesterday and prayed for you today (when I pulled out my ghee). I've always thought you have some good doctors working with you and it sounds like you are in good hands.

The photos are pretty interesting. Maybe some of the medical folk will chime in.

I'll continue to pray. My PCP is a huge believer in prayer as he's had some serious medical situations in his personal life.

Brandy

Post by **tex** » Thu Aug 09, 2012 3:35 pm

Kitty wrote:Doctors love to tell you everything it COULD be then send you on your way, scared, dazed and confused.

That's so true. FWIW, doctors have diagnosed me with cancer twice over the years, and each time the diagnosis was confirmed by at least one specialist. Both times the pathologist proved all of them were wrong (thank goodness).

I agree --those are some impressive images.

Tex

jmayk8 · Post by **jmayk8** » Thu Aug 09, 2012 4:50 pm

oh my goodness, Joe.
I must have missed your post yesterday, I'm actually glad I did-and reading this one first instead. I'm thinking of you and you will be in my prayers. Please email me if you need anything!
Jenny

Sheila · Post by **Sheila** » Thu Aug 09, 2012 8:08 pm

I missed your original post Joe and I'm glad to hear that the news could be a lot better than you thought. I don't know what is worse, doctors who keep the bad news to themselves or those who give you every possibility imaginable. Being more of a pessimist, I usually expect the worst and am so pleased with things are as bad as I thought.

You will be in my prayers and I hope to see good news soon

Sheila W

Gloria · Post by **Gloria** » Thu Aug 09, 2012 9:35 pm

Hi Joe,

It sounds a little more promising today. I'll keep praying for confirmed good news.

The MRI scans are fascinating. It's so amazing that we are able to "see" inside our bodies without a single incision.

Gloria

JoAnn · Post by **JoAnn** » Thu Aug 09, 2012 10:15 pm

Dear Joe, I haven't been able to keep up with posts lately and just saw this one. I hope you get the best possible outcome from all this. You have been such a source of strength and courage to us all, always an inspiration and a voice of optimism. You've faced so much and have always come out stronger and tougher than before. I'm sure this will be the same. Thank you for sharing and giving so much of yourself to us. We're all better for knowing you and walking together through these things. You're not alone and I hope you feel the giant hug surrounding you from our PP family. You are in my daily prayers, thoughts, and hopes for a positive outcome. Love JoAnn

Lesley · Post by **Lesley** » Fri Aug 10, 2012 5:10 pm

WOW Joe! I am so glad to hear you talking like yourself, and so ultra glad that the news is more optimistic today.

As for geeky - I am hopeless at science, but when it comes to looking at MRIs of the insides of the body I am your girl.

I had to have an abdominal MRI late one Friday afternoon, and the technician said I had to wait because they had seen something on my liver. They did another one, and wanted me to leave without a dx. I absolutely refused to go home for the weekend without knowing what was happening.
The radiologist came out and told me the chances were it was a fatty cyst, and nothing to worry about. I still worried until I heard a conclusive dx, but the weekend could have been a lot worse.
So, like others, I know whereof you speak.

Once again, I am glad, glad, glad!

carolm · Post by **carolm** » Fri Aug 10, 2012 5:32 pm

Thanks Joe for the update. I understand the upset you felt but am glad to hear you feel more grounded today.

Keep in touch.
Carol

Leah · Post by **Leah** » Fri Aug 10, 2012 9:11 pm

I missed your original post Joe . So sorry to hear that you are going through this, but you sound amazing good. I am sending positive vibes your way.
Leah

ant · Post by **ant** » Sat Aug 11, 2012 9:46 am

Dear Joe,

I have not been on the board much but just saw your post. I add my best wishes and positive thoughts. You are in my thoughts and prayers.

Best wishes, Ant

Joefnh · Post by **Joefnh** » Sun Aug 12, 2012 8:38 pm

Hello and thanks again to everyone for your thoughts, prayers and best wishes, I am speechless and humbled with all of your responses.

I have had a couple of days to get my head around this and have come to the conclusion that I'm not going to let this issue rule my emotions, I am simply going to accept this for what it is and give it the attention needed medically.

One of the life lessons learned this year is that its so easy to react emotionally to these issues and let them rule your thoughts and emotions. That certainly serves no purpose and will probably cause more issues with stress. Last winter when I was dealing with the jaw surgery I did not do well emotionally and that certainly did not help my recovery.

Right now it's time to just wait for the biopsy report to come back and deal with it accordingly.

Overall it looks like there are 3 areas with the lumbar spine that have issues. The first is the anklyosing spondylitis (AS), next is the region that is being tested for cancer and finally the AS aggravated mechanical problems that were found at L3-L5 which is causing some spinal stenosis.

This whole issue with my back giving me problems actually goes back quite a while. For many years I have had periods of lower back pain, but usually associated with a lot of activity like shoveling snow and for someone that's not 18 anymore (LOL) that's to be expected. There has also been some involvement with my legs, minor in nature that would cause a numb patch on the sides of my thighs and also a moderate feeling of heaviness.

Actually one of the first improvements I noticed with the first ever experience with acupuncture was with my lower back pain after the long plane ride over to see Gabes. I believe I posted during my trip log that Shauno did a great job of making that feel quite a bit better.

This latest flare up started just after my colonoscopy this past April and this has led to the current imaging studies with X-rays and MRI scans. This makes some sense as that colonoscopy process really does stress the system and with the AS I am dealing with being an autoimmune condition, it very well could have flared up a a result of the colonoscopy.

This week I am hoping to get the results of the biopsy and then begin working with my doctors to plan out the next steps forward.

Agian I would like to thank everyone here for your best wishes and prayers, they are very much appreciated. I am doing well emotionally and am looking forward to dealing with this and just putting it behind me.

JFR · Post by **JFR** » Mon Aug 13, 2012 6:19 am

Joefnh wrote: One of the life lessons learned this year is that its so easy to react emotionally to these issues and let them rule your thoughts and emotions. That certainly serves no purpose and will probably cause more issues with stress. Last winter when I was dealing with the jaw surgery I did not do well emotionally and that certainly did not help my recovery.

That's the attitude I work towards too, Joe, although sometimes it is certainly more of a challenge to get there than others. Right now I am challenged by the dog's fleas despite monthly treatment. First comes the freak out then come the "ok what do I do to get rid of this" minus freak-out. Fleas certainly don't match the difficulty of your situation Joe but the pattern is the same, first the "This is too much to deal with" reaction and then the stepping back and saying "so if this is the way things are, what is my best course of action?". Remember to be kind to yourself and allow yourself to feel things without judgment. It's not the emotions that are bad. It is allowing them to rule you that causes problems. You'll be in my thoughts.

love,
Jean