Waking up this morning I smile
twenty four new hours are before me
I vow to live fully in each moment
and look at all beings with eyes
of compassion
The Jacarandas are in bloom, gorgeous! I have just celebrated my 60th birthday and survival, fabulous! I have recovered pretty well from my nasal radiation, inside of the nose not quite normal but overall pretty good.
The waratahs were in full bloom and particularly lovely this year. Had a white one flower in my garden. Caught up with friends which was nice also.
Late October we went to Tea Gardens to the Myall River Festival. We had never been before so it was a novelty. Although rain was forecast it was acutally a beautiful day and the stalls and events (woodchopping, dancing, singing, ukelele concert) were right along the river, very scenic.
This month I had a 60th birthday & survival celebration which was great fun. On my actual birthday Glen had taken the day off and we went to Cottage Point Kiosk for lunch with a dear friend, Carolin. It is a small cafe right on the water in Kuringai National Park.
They do the yummiest Barramundi in a curry sauce. The weather was gorgeous and we had a lovely afternoon. My younger sister made a surprise visit from the US, which was an amazing present, arriving before the party and staying for a week. One of my nieces flew down from Brisbane to be there and my other niece managed to get off work to attend. My mother came down from Tea Gardens for a week as well. My older sister did an incredible amount of driving to make this all possible. I am so lucky to have such a supportive and loving family. We hung balloons and other decorations and a caterer did a beautiful vegetarian spread. A friend and a guitarist played some lovely music including one of my favourites, Leonard Cohen's Halelujah. Two other friends sang as well, another one of my favourites, Deep Peace. Later we played some nice loud boppy dance music got up and danced and a good time was had by all. It was such a joyful occasion.The weather forecast said rain but it was the most beautiful evening, no rain and no wind and a pleasant temperature. A great way to celebrate the fact that I am still here and enjoying myself despite the predictions of the doctors in 2008 that I wouldn't make it to my 60th.Meantime I have had several doctors appointments, including with my doctor from Germany who had come out to Australia to see patients. The pathology results have not been encouraging. My last cancer marker CA15.3 has reached 508. This would indicate the cancer is pretty active. After consultation with 2 of my doctors I started on a new drug, Megace, which is a progesterone inhibitor as the estrogen inhibitor, Fareston, did not seem to be holding the cancer. I have continue with the Fareston in case some cells are still sensitive. This was done after my CA15.3 had reached 330. A month later the CA15.3 was 508. This could be due to the fact that the new drug is useless or that it has not had long enough to work. Will retest markers next week. The peripheral neuropathy from the thalidomide was getting progressively worse so that has been stopped, hooray! A little scary as I now am not really on anything that is antiangiogenesis (suppressing blood vessel development so the cancer can't grow very big). I have had a slight reduction in foot pain so can more comfortably walk the dogs. I have added an infusion to my twice weekly regime with alpha lipoic acid which is supposed to help with the nerve repair. Means I spend more time attached to the drip stand but if it helps that will be great.
My appointment with my German doctor was very encouraging in the sense that there are still several new things available over there that could be helpful. I will probably at least repeat the treatment I had in January 2010, Removab, which made me extremely ill for about 12-24 hours but which halved my circulating cancer cell count. I had three sessions about 5 days apart and would do that again next year. There are a couple of other options for which I am waiting to get more details. There is also the possibility of hyperthermia, which is now available in Melbourne. This heating up of the body makes the cancer cells more sensitive to the anti cancer drugs, so although it is not a cure it is a way to boost the effectiveness of other treatments.
Meantime I have reduced my tablet intake from 94 to 54 which is very nice. I am now also on some new drugs for what is termed Metronomic Therapy. The definition of metronomic chemotherapy varies, but generally it refers to repetitive, low doses of chemotherapy drugs designed to minimize toxicity and target the endothelium or tumor stroma as opposed to targeting the tumor. For me it consists of taking Celebrex (a non steroidal anti inflammatory drug used for such things as arthirtis) and selenium in the morning and then low dose cyclophosphamide after lunch. This is a three month regime. I probably will not have been on this regime long enough to have any effect on next weeks cancer marker test. I have had no ill effects except slight nausea in the morning.
My main problems now are muscle cramping at night mainly in feet and lower legs which can get bad enough to keep me awake most of the night.
I have epsom salt baths, take magnesium tablets and powder and to stretches, often to no avail. Have also tried Scwheppes bitter lemon or tonic water (they have quinine in them which is supposed to help with cramps). Valium helps but I don't want to use that more than once a week or less as it is addictive, can cause depression and makes me tired the next day. The peripheral neuropathy continues to be a problem as is back pain and my energy levels are still not normal.My meditation has deepened and I am doing longer sessions and enjoying it more. I drink about 1 liter of vegetable juice a day (freshly squeezed) and eat a very healthy diet with lots of vegetables and no meat. So I keep plugging away enjoying my days as much as possible and valuing time with friends and family.
Surviving and thriving
Linda
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