Sybil Treatment Update -- 9/29/00

Sybil has decided on her new treatment options. She's going with a low-dose chemotherapy (Cyclophosphamide) combined with a cox-2 inhibitor (Celebrex). The idea is to weaken the tumors, inhibit their ability to spread, and hope her body can take it from there. If we can get her liver tumor to shrink a bit we may consider surgery if it sticks around. She threw up her first dose of Cyclophosphamide, but hopefully she will be able to tolerate this fairly well. She's been taking the Celebrex for a few weeks now.

Isn't it interesting that most of these chemotherapy drugs are known to cause cancer? Obviously, in Sybil's case we're much more concerned about near term benefits than long term side effects, but it's curious how these drugs both kill and cause cancer.

Currently, Sybil is in Vancouver with her sister to see a TCM doctor. As this will be a one visit consultation and the doctor doesn't speak English, I'm not sure how much she'll get out of it. Still, he came very highly recommended and it's a chance for her to get out of the house for a bit. I'm personally concerned that the travel may be too difficult for her, especially since we have another trip planned to go to the opposite side of the continent in order to see some of Sybil's friends, right after she returns from Canada. Sybil thinks it is better to push herself, rather than lay around. She may well be right about that. My concern stems from the observation that any time she's around friends or family, she tends to push herself into overdrive, only to fall apart when everyone else is gone. When I told her this, she said: "that's not fair to you." True, but that's not the point. The goal is to improve her health. If she can push herself when she's around friends and family, but still leave enough in reserve to keep up her strength, then I'm all for it.

She continues to have bad, sporadic pain in her legs, hips, and buttocks. These are most likely nerve pains from the radiation of the tumor in her spine. They can be quite terrible and leave her screaming for the morphine, which she hates to take and will only do so at last resort. She will have a CAT scan when she returns to make sure she doesn't have any more bone cancer.

Her weight is down to 109, which is rather bad for her. Her normal weight is 125 and she's skinny there. Her appetite is not good but she does make an effort to eat. Her digestion is not normal, but she is working on this. Of course the morphine is constipating, which is no good at all. I give her enemas to keep her going. Aside from vomiting her first Cyclophosphamide, she's thrown up her Celebrex a few times. She claims these drugs are not the cause. She thinks it is either from the morphine or the mineral water she's been drinking recently. I think it could be just about anything. Her pain alone could make her nauseous enough to throw up. Every time Sybil throws up she meticulously examines the results and endlessly theorizes on the cause. My suggestion is always to go with her gut reaction -- no pun intended.

She's been seeing a feldenkrais practitioner of late and is happy with her progress. This may seem like an odd thing to try but it seems to help. It fits in with our holistic view of health. The feldenkrais practitioner has been concentrating on improving Sybil's digestions recently. I agree that this is a key aspect of her healing. Empathetically, my own digestion has been very bad of late. I'm sure it is a stress reaction and neglect of my own health. I've restarted my qi gong exercises in order to correct this. I still do the Tibetan rites daily, but I guess that isn't enough.

It is extremely distressing to see someone you love in pain. I'm usually calmly efficient in administering to her needs under such circumstances, but inside I'm ripped apart. I can't detach myself from emotional involvement the way a nurse often does. Sybil is very conscientious about reminding me to look after my own health. She's also aware of how difficult my caretaker role can be. I've heard her apologize for screaming for the morphine when she's in pain. She has to yell out though, just as I have to hurt when she does.

Sybil has also been seeing a psychologist. We both agree that there are important psychological aspects to her healing process. While it has helped, she hasn't been completely satisfied with her therapy. Sybil is not looking at her current situation as an impending death sentence. Despite the fact that conventional medicine would indicate otherwise, I agree that her attitude is a healthy one. Her therapist is reluctant to buck the system and admit that her doctors may be wrong in their opinion. Right now, Sybil doesn't want to get into any discussion of accepting a quick exit from this plane of existence. Good for her!

Matt Donath

9/29/2000