Mostly whimsy and drivel of no consequence. And CHEESE.
Now I’d BETTER go bald.
Sarah is my sixteen-year-old niece. This was her response to someone’s comment about the oodles and oodles of hats and scarves acquired for her at the Park City Outlet Mall. You see, she has just been diagnosed with Hodgkin’s Lymphoma. Wednesday, she had various tests and examinations all day at Primary Children’s Medical Center. Thursday she had a biopsy, had a tunnelled central catheter implanted, and had two bone marrow samples extracted – one at the cheek-top of each “glutei” (that is the technical term, isn’t it?). She spent the year in Maryland with one of my brothers and his wife for the unique experience and “for fun.” Unfortunately, she spent a percentage of that time being poked, prodded, tested and having to carry around fecal samples at Johns Hopkins (lucky to be there, though) – you name it, because 1) she has Iron deficiency anemia, but cannot absorb iron supplements and must have bi-yearly transfusions, which it turns out could be a side-effect of her diagnosis of 2) Ankylosing Spondylitis, an autoimmune disorder/type of arthritis, and 3) in the last few months she has developed an alarming number of fast-growing “polyps” or “nodules” in her lymph system, which led to the diagnosis of Hodgkin’s Disease.
She amazes me and I want to applaud her. Not only has she been a real trooper through it all, she has the intelligence, wit and strength to still be, if you’ll pardon my saying so, a big smart ass. You go, Girl! I love you!
Michael Paetzold aka The Old Bald Guy
August 17th, 2005 at 3:16 am
Just wanted to post a quick note here for your niece. Best place for people with AS to get info is KickAS Forums. As a long time sufferer of AS that is the best place I have found on the net and I have looked a lot.
Also, beings I liked your blog I am going to leave a Gazoo for those from Blogazoo who read this comment this week.
Good luck to your niece and let her know about KA as their is a ton of info there and lots of supportive people. Don’t post their much anymore but do occasionally stop by and use the name Grinnbearit.
Chris
August 18th, 2005 at 10:26 am
What the… ? There has got to be something in the drinking water in Orem/Provo. Let’s see, we have Grettir’s IGA; Sarah’s AS, HL, and anemia; Cal’s Cancer; and Jenny’s MS. And that’s just our two families. Maybe it’s the Bartholomew household! We’ve all spent too much time there. I’m bound to come down with butt cancer or something now.
Kate
August 23rd, 2005 at 1:41 am
Well, butt cancer is pretty rare, but you never know. You do show several of the physicial characteristics for it.
Yes, yes we have too many acronyms. Don’t forget my Mom’s Pigmented Villonodular Synovitis (PVNS), my Utter Craziness (UC – not to be confused with the OC), and Shirleen has her back all fused together (can’t think of good initials for that one). Oh – and Shirleen and I both may have the AS as well, and I could have Cervical Ankylosing Spondilitis (CAS?) variety – so far we can just say we have arthritis. My Mother has Psoriasis (P?), considered an autoimmune disorder, and Janet has Anticardiolipin Antibody, which is a Antiphospholipid Antibody Syndrome(APS), an autoimmune condition that has caused all her miscarriages.
At this point the garden variety stuff like asthma, allergies and acid reflux seem almost boring.
Here’s the real question: Is this my fault somehow???