Just when I thought 2008 couldn't get any worse, I got a call this morning that my grandfather is in the hospital. He has metastatic kidney cancer, he already had a kidney removed in August of 2006. Things had been up and down but he seemed to be doing well lately. I talked to him on the phone twice last week and he sounded great. He had a brain scan in September that was normal, but now he has at least five metastases in his brain. Yesterday they caused a bleed, and now he has, essentially, stroke-like symptoms from the inflammation. He can't talk and the frustration is driving him to tears. There isn't really anything they can do. Even with radiation (which the docs are not recommending, as a quality of life issue) they said he has about three months. This is not good.
It's been about two weeks since I was diagnosed, and I have an appointment with the doc on Thursday. I figured I couldn't be that bad off, since he didn't want to see me for so long. I really wanted to go out there tomorrow, I had a ticket on hold, but my side feels weird and after being so upset all day I felt too exhausted to travel, especially without my husband, who can't leave yet. I made up my mind on the drive home from work that I would talk to the doc on the phone tomorrow if possible, reschedule, and leave early Thursday morning. Then I got home from work and I had a letter from the doctor (I have not spoken to him, but his nurse did give me a few messages). It said:
Dear (Confused in IL):
Your extensive work-up points to Crohn's disease of the small intestine. You have significant high titers of antibodies which may predict severe course of the disease. I would strongly encourage you to be aggressively treated. You may want to find another gastroenterologist if you are not satisfied with my care...
And he goes on to say he's willing to give me the names of other gastroenterologists who are "interested in treating this condition as well," and to let him know if he can be of further assistance to me.
I'm not really sure what to think. I only talked to him once for a consultation, and then he did the colonoscopy six months later. Obviously his impression from the consultation was wrong, but the doc in Chicago did not diagnose the Crohn's either so I don't hold it against him. When I had the colonoscopy he seemed mad, maybe at me somehow because he didn't order it (my primary at the health center did), of as if he felt like he was wasting his time and wasn't going to find anything. Is he just writing that because he didn't diagnose me properly the first time and he feels bad? Does he not feel able to treat me? I don't know. I am not too pleased with him because he won't talk to me on the phone, but I don't feel like I've really given him a chance.
The whole thing got me upset. Today I was so anxious I was getting a fever, but I walked on the treadmill for a little while and felt better. I'm just so confused. What does severe course mean? Aggresive treatment? Apart from this vague discomfort on my right side, started last night after dinner at a Mexican restaurant (lesson learned) I have been feeling OK. But that pretty much sealed the deal, and the prospect of a "severe course" made my family think I should keep my appointment Thursday and wait until the weekend to fly out. So I'm waiting.
Anyways, these are my Serology 7 results. Reference values in parentheses.
ASCA IgA <12 (<12)
ASCA IgG 61.9 (<40)
Anti-OmpC 19.4 (<16.5)
Anti-CBir1 114 (<21)
IBD specific pANCA:
AutoAntibody <12 (<12)
IFA Perinuclear Pattern Not detected (Not detected)
DNAse Sensitivity Not detected (Not detected)
When I looked at it, I thought, "gee, three numbers are high, but I four out of seven are normal, so I think that means I'll be OK." Optimistic, I guess? Does any one else have numbers that high?
On top of all that, my recent CT scan said one of my kidneys looked inflamed and I have two "lateral subcapsular foci" in my liver, I don't know if my liver still goes down to my pelvic bone or not, didn't say. And my sister in law probably has MS. And my sister is pregnant, unwed, has an ovarian cyst, just moved to the other side of the country... And about seven years ago my father was told he had six months to live, he's still around but lately not well at all, I doubt if he'll see 2009, either.
Please tell me: Why must all this *&^% happen at once??? I told my mom today that I was already writing off 2008 as a &^^%$ year, which is sad because it's only January 15th. Her response was "I hope it gets better soon, because I can't talke eleven and a half more months of this."