Guest guest Posted November 23, 2005 Report Share Posted November 23, 2005 In a message dated 11/23/2005 9:41:33 AM Eastern Standard Time, debbied31@... writes: And driving on a daily basis ( we wont discuss how I got totally lost the other night Hope all is well Deb I wanna hear this story...Deb... we can always use a laugh... you got lost in your own town?? Glad Joe is following up on " stuff " ...sorry about the chest pain...Glenn's is usually on the right side or more in the middle...supposedly from liver radiating pain... so don't think Joe's is the same thing, Thank God!! Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2005 Report Share Posted November 23, 2005 Deb, Thank you for taking the time to do an update. I don't blame Joe for wanting to get this checked out. We are all so gun shy with this. I am so scared with my upcoming colonoscopy on the 28th. This coming Monday. I am sure Joe is worried too. I know it is natural to worry. But damm this cancer!!!! Happy Thanksgiving!!! Love, Ingrid > > Hi all, > Thought I would write a update on us , as I havent in awhile, > Joe continues to do pretty good, he has had unexplained pains in his left chest area for a few weeks, radiates all the way through to back, decided to go to the docs to get it checked, she said ( what we think ) is that he pulled something , but she wants to do a chest ct scan as a precaution, ( we are all for that ) > He has also been getting reallllllly tired lately ( unusual for him) however he works REALLY weird hours 130am-930am 6 days a week , physical labor. > And never gets more than 7hours a sleep a night , so we think this is the reason. > He goes for his first colonoscopy ( the other one didnt count as they couldnt do it ) on Nov 30. > Dani our daughter , continues to have a variety of odd things going on with her , unexplained joint pain ( shoulder , hip) episodes of staggering ( almost like she is drunk) we believe this is all due to the chiari/syrinx in spine but wont know more til next Neuro appt. in Jan. > On a good note , she is passing all of her classes , even dreaded Algebra 2 . > is doing well , with very minor hearing issues, > As for me , I am medicated lol Wellbutrin does the body good > And driving on a daily basis ( we wont discuss how I got totally lost the other night > > Hope all is well > Deb > > > > 33yrold husband Joe, was diagnosed with CC in Sept, > resection on Sept 27th 2004 > found mets to the abdominal wall lining 3 lymph nodes involved > open wound from infection until Jan 2005 > Ileostomy reversal Dec 7th 2004 > Chemo regiment begun Jan 2005 > 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy Valentines > Calcium Magnesium added for the Tingles Feb 28 2005 > Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on liver found > April 1 2005 PET scan done awaiting results > April 11 PET SCAN SHOWS NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! > May 9 Plateletts are low 75,000 > > > > > > --------------------------------- > Yahoo! FareChase - Search multiple travel sites in one click. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2005 Report Share Posted November 24, 2005 Hi, Deb. Thanks for the update. Have been thinking of you and your family for a long time. Hope all the exams go well and come out good. Take care. Hugs & prayers, ~Deb from KS deb vamdembos wrote: Hi all, Thought I would write a update on us , as I havent in awhile, Joe continues to do pretty good, he has had unexplained pains in his left chest area for a few weeks, radiates all the way through to back, decided to go to the docs to get it checked, she said ( what we think ) is that he pulled something , but she wants to do a chest ct scan as a precaution, ( we are all for that ) He has also been getting reallllllly tired lately ( unusual for him) however he works REALLY weird hours 130am-930am 6 days a week , physical labor. And never gets more than 7hours a sleep a night , so we think this is the reason. He goes for his first colonoscopy ( the other one didnt count as they couldnt do it ) on Nov 30. Dani our daughter , continues to have a variety of odd things going on with her , unexplained joint pain ( shoulder , hip) episodes of staggering ( almost like she is drunk) we believe this is all due to the chiari/syrinx in spine but wont know more til next Neuro appt. in Jan. On a good note , she is passing all of her classes , even dreaded Algebra 2 . is doing well , with very minor hearing issues, As for me , I am medicated lol Wellbutrin does the body good And driving on a daily basis ( we wont discuss how I got totally lost the other night Hope all is well Deb 33yrold husband Joe, was diagnosed with CC in Sept, resection on Sept 27th 2004 found mets to the abdominal wall lining 3 lymph nodes involved open wound from infection until Jan 2005 Ileostomy reversal Dec 7th 2004 Chemo regiment begun Jan 2005 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy Valentines Calcium Magnesium added for the Tingles Feb 28 2005 Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on liver found April 1 2005 PET scan done awaiting results April 11 PET SCAN SHOWS NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! May 9 Plateletts are low 75,000 --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 The good news on Joe brightens my day-I am sure it did not hurt your day either. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2005 Report Share Posted December 16, 2005 Hi Lydia , yes you read it correctly , In March of this year , our then 13yrold daughter was suffering from pain and numbness in her right arm/hand , we took her to the doctor thinking maybe she had a pinched nerve, they did an MRI and found out she was born with something called Arnold Chiari 1 malformation( basically the base of her skull is too small, which caused part of her brain, called the cerebellum tonsils to herniate into her spinal canal) which caused her to have syringomyelia ( syrinx) in spinal canal. What this is basically a pocket of fluid in spinal canal causing nerve damage , her syrinx goes from c2(neck area) to absolute bottom of spinal canal. We later found out from her , that her right face /shoulder/upperback/arm/hand are all numb ( she never mentioned it before) this is all part of the nerve damage from the syrinx in spinal canal. In July 2005 , one month after Joe finished chemo , she underwent brain surgery , where they removed a piece of back of skull where it connects to neck , opened the dura covering , removed the piece of brain that had herniated into spinal canal, then made another incision at the top of her head to remove a membrane to use as a patch for the dura . They also did a laminectomy of C1 (removed part of it ) She wound up with debilitating headaches after surgery , which we later found out where from a spinal fluid leak, which was suppose to have healed on its own( we hope it did MRI should show if it did or not ) Alot of people with Chiari are often misdiagnosed with MS So now here we are wondering where we go from her, Her main concern with the surgery was it would effect her mentally , but it hasnt Thank God , she is extremely gifted , turned 14 in Aug in 10th grade gifted school. We kid her that her brain was just to big for her skull Deb mily wrote: Ok Deb, this makes me very happy, as for Joe, but did I understand well? Did your daughter had a brain surgery? There's always something. Isn't there? My prayers for you all. love, lydia --- deb vamdembos wrote: > Ok yall, I called the oncologist about Joe's ct scan > and asked if he couldnt give them a look over, I > absolutely have no faith whatsover in our primary. > Onc. said nothing to be alarmed about no cancer, > that the stuff in mediastinum is thickening of > tissue, that we will keep an eye out on next exam in > feb, but as for right now everything looks great > So we aint gonna worry about it then!!!!!!!!!!! > Sorry I havent replied sooner , our darn puter > died after an update from dell, after 5 days of > talking to tech support on phone and having a guy > come out and replace motherboard and memory they are > sending us a new one! > We had only had it for 6 months and all was still > warrantied > Dani goes in for an MRI on Sunday at 6am, she has > been having dizzy spells , and tremendous > shoulder/arm pain , and headaches again so not > sure what exactly is going on there, we know its > somehow connected to either the Chiari or the syrinx > in spine but unsure of which is causing it. More > importantly not sure how to make it stop!She is > bumming she says " I had brain surgery and it didnt > even help " poor baby. > > We HAVE GOT TO put up our Christmas tree > tomorrow!!! > We are ALL DONE shopping , wrapping and even got > stocking stuffers done!! > But no tree or decorations around house up lol. > > > Hope all is well with everyone > Deb > > > 33yrold husband Joe, was diagnosed with CC in Sept, > resection on Sept 27th 2004 > found mets to the abdominal wall lining 3 lymph > nodes involved > open wound from infection until Jan 2005 > Ileostomy reversal Dec 7th 2004 > Chemo regiment begun Jan 2005 > 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 > (Happy Valentines > Calcium Magnesium added for the Tingles Feb 28 2005 > Ct Scan done March 23rd 2005 , 16 millimeter cyst > like object on liver found > April 1 2005 PET scan done awaiting results > April 11 PET SCAN SHOWS > NED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! > May 9 Plateletts are low 75,000 > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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