Friday, March 7, 2008

Clueless About Cancer

My mom is going in for a bone marrow biopsy as well as a battery of other tests today. We met with her radiologist on Wednesday afternoon - he seems like a nice person, but word on the street is that he is a bit of a foot dragger. Great. Oh, you have cancer? Well, I guess I'll see you in a couple of weeks, then. Actually, this guy seems alright to me. And he is very supportive of us wanting to go to Dana Farber. They are going to take care of the referrals and everything. They need to know the type of cancer (whether or not the bone is the primary sight or if another organ such as a lung or breast is the primary sight and the cancer cells have spread to the bone) and the stage. Once those 2 things are determined, a treatment plan will be put into place.

I have no idea what to do. I'm a trained project manager, so the most I can muster is to go to appointments with her, armed with my notepad, writing all this stuff down. I am trying not to read "success stories" as tempting as it may be. What if this is not a success story? I am afraid of what is going to happen to her, what kind of pain and discomfort she is going to have to face, and how little I am going to be able to do to control any of it. I spoke to my employer and I am able to take up to 12 weeks off (unpaid, of course) to care for my mom. I could also work out doing a 3-4 day work-week, if this is more conducive to her treatment plan. I just want to be armed and ready to fight at all times.

I made soap last night. I hope it's alright for me to do this, still. It helps me take my mind off of what's going on a little. But I still feel guilty. Like people are going to talk or something. Here her mother's got cancer, and all she can do its make soap for that damn small business. What a nice daughter!

I researched support groups and there is a caregiver support group in Newton that meets a couple of times a week. Although I am not her primary caregiver, I would still like to take as active role as I can. And I want to do a good job, so I am hoping that other people might be able to help me with that. I also need to figure out a way to deal with being so pissed off about this.

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4 Comments:

Blogger Caitlin said...

There's no perfect solutions or action plans or bag of tools you can create for this. What you need is what you already have, which is love, attention and care.

Take notes, research everything the doctors say and ask questions, twice if you have to - those are the three best things you can do.

So happy to see you pooling your resources and looking into support groups.

I will be thinking of you.

March 7, 2008 at 9:15 PM  
Blogger 02145 said...

Thanks, Caitlin. We will know a lot more after this Wednesday. Her blood work continues to be fine, so that's promising.

Man, someone should make a huge bill board that says: JUST BECAUSE YOUR BLOOD WORK IS NORMAL, DOESN'T MEAN YOU DON'T HAVE CANCER.

Actually, I think that would be really scary to the general populous.

March 8, 2008 at 3:29 PM  
Blogger Caitlin said...

I've vented to my family a lot about the way our society handles "preventative" medicine so friggin casually. People always get diagnosed with cancer after some large warning sign arises or due to some seemingly unrelated health problem. But why on earth do we wait for this? We aren't we getting yearly check ups for known cancers just like our stupid teeth cleanings. (Don't get me wrong - it's important but I'd rather be cancer free than have pearly whites.) I understand that it would be costly to do these types of screenings because there would be a lot of x-rays, mri, cat scans, etc. But hell, if that what it takes then that's what it takes.

You're right about the blood work. It's a good indicator for some health basics but they can't rely solely on that to determine the status of your mom's cancer.

The public should demand more from their doctors and thank goodness your mom thought to get an mri in the first place when she had back pain.

Since we have to rely on ourselves to be advocates for our health and our preventative health needs, we really should make some sort of public awareness together.

March 9, 2008 at 12:07 PM  
Blogger 02145 said...

It's true. The oncologist who evaluated my mother's case back in December saw my mom's blood and urine test results and quite literally said: I don't think you have cancer. I'm going to see some sick people now. Even though she had fractured her neck without any kind of trauma. I guess we just wanted so badly to believe him that none of us insisted that she see another doctor. And we were (and still are) a little naive about bone cancer.

I do hope that it becomes easier to detect in the future so that asymptomatic patients can be treated early enough to give them a chance. I hope it's still early enough for my mom, too.

March 9, 2008 at 6:45 PM  

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