Saturday, December 15, 2007

day +116

Yesterday afternoon I went over the final details of a research study offered by Sloan-Kettering over the phone with a research assistant of the team conducting this study. Presently, there is no genetic test to determine if a familial link exists in the diagnosis of lymphoma or lymphoproliferative disorders (Hodgkin's Disease, Non-Hodgkin's Lymphoma, leukemia, multiple myeloma, and other similar diseases) but the hope of this study is that the information gathered may lead to such a genetic test. Interestingly, genetic tests do exist for other cancers but not for lymphoproliferative disorders. So, let's hope this study leads to come helpful answers.

I answered a couple of simple questions about my medical and family history over the phone and then, now all I need to do is wait for the simple cheek swab kit that they're going to send me in a few weeks. Because my blood reflects my donor's genetic heritage and not my own, a sample of my cheek cells, which still maintain my own unique genetic material, must be used. Isn't that pretty cool?

This research study is free and can be done entirely via the phone and mail. Sloan-Kettering pays the entire bill and one doesn't have to be a patient of Sloan-Kettering in order to participate in this study. Patients of lymphoma and other blood cancers as well as their parents and siblings are eligible (regardless of medical hospital or institution) to participate in this research study.

I told the research assistant that I'd spread the word about this study on my blog in the hope that others may consider participating. You can learn more about this research study which is named, "Ascertainment of Families for Genetic Studies of Familial Lymphoproliferative Disorders," here. Please tell others about this as well. The more, the merrier.

On very different note, I broke down in Su's presence last night as I thought about Monday's impending appointment. As you know, I had a PET scan on Wednesday morning and on Monday, I'll see Dr. Barker, who will subbing for Dr. Castro-Malaspina. Yesterday afternoon, a gentleman whom I assume is Dr. Barker's secretary called reminding me of my Monday appointment. I found this both odd and unsettling, because I couldn't recall a time in the past when someone had called specifically to remind me of an upcoming doctor appointment. Was this, as Su suggested, perhaps Dr. Barker's new secretary who was more proactive than the norm? Or was he calling to make sure I showed up to hear some message of doom? It's always easier to think negatively, isn't it? Positivity is so much harder (especially in the face of adversity). It takes way more effort. Negativity is far easier, because it takes almost no effort to muster and sustain.

Thinking in the worst possible terms, this call stunned me and, then I began to grow alarmed. So, after wondering a bit about what lay behind the secretary's call, I decided to leave a message for Ally, Dr. Castro-Malaspina's wonderful in-clinic nurse, to see if she had any information about Wednesday's scan. She's reliable at returning calls, but I never heard back from her yesterday. Naturally, this too concerned me. Was she just too busy to call back? Perhaps, I thought, but as best as I could recall in the past she called me back always. Did she not have even 5 minutes to call me? Or maybe the news is bad and as we both like one another, she found it too difficult to tell me over the phone and instead decided to let Dr. Barker tell me in person on Monday.

So, I think it's clear how the call I received yesterday afternoon rocked my thinking. But after crying and worrying and sleeping, I feel considerably better this morning. Though at moments during the past two weeks, I've been emotional I hadn't cried to the extent that I did last night. The crying, I think, was a good, liberating act. It was cathartic.

I will try to keep myself busy this weekend, so that there will be less time to spend worrying about that which I can't control. And as Su told me so innocently last night, let's hope that whatever is disturbing my belly are found to be "sea horses." This made me chuckle.


Comment Anonymous Heidi said...

The waiting and wondering about results has got to be one of the absolute worst feelings in the whole world. I keep thinking there has got to be a better way to do it, because the not knowing and waiting is so very hard. Anyway, I will be thinking of you and praying the results are good on Monday.

Take care,

2:39 PM  
Comment Anonymous EFG said...

oh Dear Duane, I didn't see your posting till now at 2:38pm . when we spoke earlier today, I hadn't realized the depth of your worry.
Nothing I can say to make you not worry but just know I am thinking of you and understand.By the way, crying is ok and actually good for you .

2:40 PM  
Comment Blogger S said...

We're thinking of you on Monday.

Sarah and Scott

7:54 PM  
Comment Anonymous Laura Lehmann said...

Duane, I had a checkup a week ago with CT Scan. I nearly had a heart attack when the secretary of Dr. Kewalramani called to confirm my appointment. My CT Scan was fine. I think its there new policy xx

9:05 PM  
Comment Blogger Mary said...

Dear Duane-

Well, crap. Waiting for test results really sucks. I was pretty much a wreck last time for the week surrounding my PET scan. I just wanted to say that I don't think the secretary's phone call or the nurse not responding are indicators of the test results. My oncologist's nurse usually calls me back right away, but has taken longer just because of being busy, and sometimes I get phone calls for appointments from the hospital and sometiems i don't. Even with that said, I know it's still hard not to worry when it's your results you're waiting for. So mostly I just wanted to say you're in my thoughts, and I can't wait to read that everything's fine.


10:01 PM  
Comment Blogger Michelle J said...

Duane, you are always in my thoughts!! I just know everything will be fine on Monday!! Be strong my friend!
Love Michelle

8:19 AM  
Comment Anonymous Anonymous said...

Yay for sea horses.

I'll be sending you positive energy on Monday.

~Sarah formerly up the street

8:33 PM  
Comment Blogger Veronica said...

Thinking of you today as you go get your results..........hoping and praying for good news............xx

4:46 PM  

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