July 2007 - Jim's pain in the back and groin for the past 2 months lands him in the hospital. CT scan shows swollen lymph nodes (LN). Oncologist gets involved. Doc recommends biopsy.
August 2007 - Endoscopic biopsy. Results are in. In a nut shell, they say it is not cancer, however there are 2 cells unidentifiable, possibly metastatic cells???? Doc says, let's just watch it, and do another CT scan in October.
October 2007 - Doc says CT scan in October shows LNs are "possibly" the same size, maybe a bit bigger. He thinks an open biopsy would give him a better idea, but risky, cause it's so close to his vertebrae. Jim still in pain. Pain pills help a tiny bit. Some anti-inflammatories help, so Doc says to sit and watch.
November 2007 - Pain is extreme. Jim in the hospital again. LNs are larger. Oncologist wants to do another biopsy. He will try laparoscopy. If he can't reach the LNs, he'll open him up. Laparoscopy worked, biopsy taken. Some adhesions removed from Jim's old scar. Fibrous in nature. They can't get Jim's pain down for anything. Jim's put on pain pump and in hospital 17 days. Doctor says if it's cancer, it's bad because of the pain. Biopsy comes back....NO Cancer. Yippee. But what is this intense pain? And why are the LNs swollen?
December 2007 - Jim's home 9 days, makes it through Christmas Eve. Christmas was filled with horrific pain. He goes back into the hospital for pain management the following day. His blood numbers and inflammations rates are extremely high still. Doctors diagnose him with an extremely rare disease. Retroperitoneal Fibrosis. Jim's on tons of pain killers, high doses of prednisone other meds and he's sent home 9 days later. This disease is so rare, there's no info. I did find a great site on Yahoo, and began to unravel this disease. But why the swollen LNs? Nobody with this disease has them?
January 2008 - He had blood in his stool. A colonoscopy and endoscopy is ordered. During the endoscopy, the doctor sees blood flash across the screen (thank you Lord). He goes deeper, sees a mass on the duodenum and takes a biopsy. Jim's admitted to hospital again, with an enteroscopy ordered for the following day. Another biopsy is taken. 10 mins after that biopsy is taken, the biopsy from the day before comes back. We're told that Jim has duodenal cancer, and it's not good. Kids come in from Ohio. Things look grim. They talk about Whipple surgery. Don't ask. You don't want to know. Prognosis, not good. But the next day we are told they're not sure what kind of cancer it is. Thanks guys. Jim sent home to await biopsy details. We pray that his duodenum does not perforate.
February 2008 - Pain too severe. Oxycontin, pain patch, etc. Nothing works. Jim is back in the hospital. White blood cell count continues to drop. He continues to bleed through the duodenum.
February 5, 2008 - After 16 days, biopsy has finally come back. Jim has Non-hodgkins Lymphoma. Much better than duodenal cancer. However, not sure if it's T-cell or B-cell. Doesn't matter. Time for Chemo.
In one day Jim gets
- a Muga scan to check his heart.
- a port installed under his skin, into a main artery for chemo.
- a bone marrow biopsy (very painful)
- 3 units of blood
- his first does of Chemo
February 10, 2008 - Jim's home. And it's my birthday. It was actually a great day.
There are actually tons of things have left out that made life really hard: things like my dad was admitted into the hospital about 4 times throughout all of this. Jim's integrity was questioned twice during hospital stays because of the oxycontin. Me driving to 3 hospitals for CD scans, medical records, biopsy slides, to send to a doctor at John Hopkins for the Retroperitoneal Fibrosis that he doesn't have, doctor visits galore for the Retroperitoneal Fibrosis. Records and biopsy slides send to John Hopkins lost, records found, and it goes on and on. But we are thankful finally there is a diagnosis and we are on working on fixing it.
1 comment:
3/08/08
Hi Jim and Dolly, This is the 1st time for us to visit the "Jabberwock". Joe and I are on a business trip for a few days. You are in our hearts and prayers all the time. I think you did a good job of reporting ,Dol. Can you believe Grandma Ethel had her 89th BDay last week? We hope to see her soon but our colds prevented it this week. I spoke with her and she sounded good and was even making little jokes. Joe just explained to me that everybody can read this and I had written stuff that should be emailed so===". I like verse 15 in psalm 90"Make us glad according to the days you have afflicted us, the years in which we have seen evil". MJB
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