I'm losing him and he's losing his life. The cancer metastasized into his liver and Kaiser gave up on him. I didn't know what to do or where to turn until it was too late, and then how to get a referral to Sloane-Kettering? how to pay for it? in time? (The people who go there live in NYC or are highly paid professional types.)
Would that he looked today the way he did this past Sunday:
He does not. He was eating that day; he has stopped again and trembles violently when he goes for a walk down the hall.
He fell last night trying to come to the front of the house to be with Caroline, me and Yvette; he trembled as he lay there, and it was horrifying.
This may be the last photo I will take to remember him by.
Such smart people to be so stupid. He should not have had that drastic operation. Did he think to himself that we were nobody and nothing and our luck had run out and grabbed at that operation as a last chance, hoping for no metastasis? I didn't think that way. I only dreaded the operation and preferred him to do the chemotherapy first. We should have tried to see the Boston doctor a friend told us about and paid whatever thousands were required. Then he feared the delay more than the sums of money required.
Or gone on holiday to England (Cornwall, the Lake District we dreamed of going to in a couple of summers or fall) to enjoy what time he had left. Oh how I regret we didn't. Instead we let them grow richer on his sufferings.
Upon being told it had metastasized I should have done something. I did not understand what this fully meant at first. I did not foresee how he would not, could not eat. It seems each time I was ignorant or didn't realize what I needed to realize (I couldn't -- it was too dreadful) and didn't know where to turn and was repeatedly confronted with his refusals to cooperate. Perhaps I should also remind myself that at every stage he did choose: recently he choose not to continue the chemotherapy pills; it's been he who was so loathe to do the blood work before chemotherapy that I cancelled the appointments. Our nurse said not taking the chemo pills would allow the cancer to grow without a counter-offensive but the Admiral said they made him nauseous. And now his whole central cavity is in the grip of this disease, and he is too weak to get to the bathroom by himself. I know that chemotherapy would just have prolonged this process, made it happen much slower
I wish someone had talked frankly to me. Reading on-line didn't help. Information never became knowledge until it was too late.
I did everything I could for him. I left no stone unturned as soon as I understood what he was facing at this or that juncture. Then I was thwarted. Either by him -- who would not get on the phone, not drive 300 miles and spend whatever in some hope of help. He felt no hope. And the second opinion I got cost me $433 and just justified what had been done. Of course she would. Or the medical establishment who regarded him as expendable. They were interested as long as they could justify procedures for which they would be paid.
See my The Politics of Cancer, Revisited.
To Whoever may read this: Don't belong to an HMO if you want to survive a serious life-threatening disease. If you are like me and all your life have had a hard time getting a doctor (since I knew few people), much less one you could be sure was good, then the HMO provides an array; it is true that they have no stake in doing unnecessary operations so you will be not be subjected to medical procedures and medicines you don't need; but this lack of personal profit works in reverse if you are seriously ill. Then no one there has a personal interest in making you well; it does not matter to anyone individually if you die; what matters is not costing too much.
It is true that for me outside Kaiser I usually had bad experiences with doctors. I was told I was a neurotic woman when I went to one man with a headache and the price was $37.50 for five minutes of his time. This was 30 years ago. I've not forgotten it.
No; now I really must not reproach myself for an unlived life.