What hope in this context means

Yesterday: Breakfast and meditation with Karunadevi, skype call with Trebor in Berlin, a gentle Iyengar class which felt good on my sore hips, and an hour meeting with Misha...and watching Homeland (second to last episode), and the movie Ted.  The main thing I took away from the meeting with Misha was that she was hopeful or at least suggesting the possibility that we could find some kind of treatment (not necessarily chemo) that might prolong my life.

Apparently Kaiser will pay for someone to get treatment if they can't provide it. Misha suggested that I convince my doctor that I need to go to UCSF, which has a gynecological cancer clinic and does experimental treatments. Kaiser can only use approved treatments. I also need to call Keith Block and The Second Opinion folks again which I will try to do this morning. I realized that the hope that everyone says you must hang on to when you have cancer is...well I suppose the opposite of I'm not going to do anything proactive anymore, just going to wait to die, which should be soon. Perhaps that attitude is appropriate at some point, but not when one is feeling healthy like I am. It reminds me of the idea of 'learned helplnessness' which wikipedia defines as "the condition of a human or animal that has learned to behave helplessly, failing to respond even though there are opportunities for it to help itself by avoiding unpleasant circumstances or by gaining positive rewards. Learned helplessness theory is the view that clinical depression and related mental illnesses may result from a perceived absence of control over the outcome of a situation." Still, I can't say what the hope is for. Perhaps one can remain proactive while dying.

It also occurred to me that I could start some kind of chemo, and stop when I felt like it wasn't worth it anymore. I had been thinking of it as 18 weeks of chemo or zilch, there might be something between...

Got a reply from Dr. Nelson this morning with a copy of the CT scan report:


----- Message -----
From: CULLEN,LISA D
Sent: 12/11/2012 7:03 AM PST
To: AMY RUTH NELSON MD
Subject: Results of CT scan

Hi Dr. Nelson, 
There was no appointment with you available so wondering when I can get the scan results. Important info at this point for me is 
-how to deal with the pain in my chest, which is not intense right now, more like an ongoing heartache, but presumably will get worse.
-wondering what my decline is going to look like and projected life expectancy (I know those numbers are often wrong)
Possibly open to chemo but these other questions are more at the forefront for me now.
Cheers, Suvanna 


To: Lisa D Cullen
From: AMY RUTH NELSON MD
Received: 12/13/2012  5:38 AM PST

Ms. Cullen - 

I have attached a copy of your CT scan report. There has been progression of the disease in your lungs and you also have some lymph nodes in the middle of your chest. None of the findings are "pressing" on any structures that warrant proceeding with radiation right now, but I do wonder if the "ache" is related to the progression. There is no cancer apparent in your liver, adrenal glands or other areas. The bone findings are harder to interpret, as the sclerosis mentioned on the report, can be from bone healing. I have included the report below for your review. 

It is always hard to predict how a person will do, particularly someone as young and otherwise healthy as you, and with you looking as good as you do right now. I, though, suspect that over time you will become weaker and that cough / shortness of breath could be issues. If you do not do chemotherapy, or do not respond to chemotherapy, you may benefit from radiation. Your pace of disease, though, does worry me as there has been significant progression over a relatively short period of time. Thus, I am concerned that survival will likely be measured in months to maybe a year. But, please to not start a "count down" as this is just an suspicion. As time goes on and we work together I will certainly be honest with you as to what I am seeing. Also, I think you will be able to judge what is going on and have a good sense of when time is becoming much more limited.

Unfortunately, I am out of the office until Tuesday, but I can ask Anna to set up a time to talk, either in person or on the phone, when I return.

- Amy Nelson, M.D.



CT OF THE CHEST, ABDOMEN AND PELVIS

** HISTORY **:
Vaginal adenoca to lung. ? progression. Lung nodules enlarging,
? new site of disease

** FINDINGS **:
Technique: Axial images were obtained from the lung apices to the
pubic symphysis after IV contrast administration. Comparison is
made with 03/28/2012.

There is interval increase in the size and number of pulmonary
nodules. For example, a lobulated left upper lobe nodule
currently measures 41 x 32 mm, previously 20 x 16 mm. A right
middle lobe nodule measures 21 mm, previously measuring 8 mm.

There is new mediastinal and hilar adenopathy with nodes measuring
up to 20 mm in the right pretracheal region, 15 mm in the
prevascular space. There are no pleural effusions. There is no
axillary adenopathy.

There are no new hepatic lesions. There is no change in a well
circumscribed 11 mm low attenuation lesion in the inferior right
hepatic lobe. The spleen, pancreas, and adrenal glands are
unremarkable. The kidneys are unremarkable. The aorta is normal
in caliber. There is no adenopathy and no evidence of free fluid.

There are new sclerotic lesions of the left inferior pubic bone.

Dose: CTDI: 16.7 mGy
DLP: 1113.9 mGy-cm
Phantom: Body 32

In compliance with California state regulations, detailed dose
information is available and can be accessed by requesting the CT
images through the Release of Information (ROI) process. Please
contact your local business office or Hospital Information
Management office for details.

** IMPRESSION **:
1) Marked interval increase in size of several pulmonary nodules.
Slight interval increase in number of pulmonary nodules. New
mediastinal and hilar adenopathy.

2) New sclerotic lesions of left inferior pubic bone.