Circular letter 3 (mei 2002)

Date: Thu, 02 May 2002 16:57:39 +0200 From: dulfer@xs4all.nl Subject: Circular letter 3 (02-05-2002) Bcc: andayani@hotmail.com, armu@pathsby.or.id, benyaminak@uksw.edu, ertonange@yahoo.com, fis2iman@yahoo.com, gunadi.3@osu.edu, h161240p@yahoo.co.uk, kh_timotius@uksw.edu, ksuwondo@indo.net.id, lisprn@uksw.edu, marmi@uksw.edu, nkatu@hotmail.com, oetarikw@yahoo.com, rusfitri@yahoo.com, saptono@lp3k.or.id, setiyoko@hotmail.com, Sudarti@yahoo.com, sutri@uksw.edu, suyoto@mail.uajy.ac.id, wilardjo@indo.net.id, xander_xs4all@yahoo.com Dear friends, Greetings from Amersfoort. Quite some time has elapsed since we sent you our second circular letter. The reason for the delay will be clear when we describe our recent medical problems.  Gerard: Our previous letter was sent in the period between his first and second chemotherapy treatment, when he was regaining strength after a three weeks stay in hospital for non-functioning bowels. He felt quite well when he received his second treatment, which was given in the week preceding Easter. To avoid the problems that occurred during the first treatment, the mix of medicine/chemicals that was used had been adapted. The four days treatment went very well. However, on Good Friday, one day after the treatment, he suffered from a swelling tongue and throat (probably after he had inadvertently bitten his tongue. He was admitted into the hospital. His condition quickly deteriorated (high body temperature and increased swellings). On Saturday he was taken to the intensive care unit. He was kept under narcosis for 8 days during which period doctors were battling the underlying cause, a streptococcus A infection. On Monday 8 April he regained consciousness and could be moved to another unit later in the week. On the 20th of April he could return home. It is a miracle. We feel very thankful that he has been granted a new period of life. He is recovering quickly, although still weak and feeling like an old man. Of course, the problems associated with Kahler's disease are still there, but he enjoys being able to stay at home and resume some of his activities there. So far, the treatment has been very successful. The number of (wrong) plasma cells in his bone marrow had gone down from 72% to 7 % after two treatments. Given this result his doctors now consider adapting the treatment again (making it less aggressive), also to reduce the chances and intensity of side effects (which have been very extraordinary in his case). The new approach will be discussed on the 8th of May.  Lucie: As you may remember, she was operated on her bowels during which a artificial outlet for her colon (stoma) was made. An analysis of tissue/cells taken from her colon showed that she had cancer. At first the doctors decided that she should be operated on the cancer that had been found, but later, after a few weeks and more check-ups (which showed that cancer cells had been spreading to other parts of her belly), the whole medical team said that another operation would cause too much damage in comparison to the benefit it might give. The team advised on a chemotherapy treatment. She now has the same medical specialist as Gerard. He arranged that she could have her first, one-week chemotherapy treatment in the hospital (not in the day-care clinic), lying in a bed next to Gerard. We were very grateful for this arrangement, which allowed us to be together and support each other. She needs similar treatments once every four weeks; six times in total. The first treatment went fairly well; she did not suffer serious side- or after-effects.  Research results show that only one patient in three will benefit from the treatment that she receives. If it is decided after three months that there is no positive effect she will stop.  We realize that the life span of both of us is probably fairly short, although we don't know how short. One year? Two years? A few years more for Gerard, perhaps? Our family is quite devastated about it as you can imagine, perhaps it is even more difficult for them than for us. Although we don't believe that our illnesses are God's doings, we believe that He will take care of us in this situation. We have to live our shortened life in a meaningful way. That's not easy, we admit. Uncertainty about the (after-) effects of the medical treatment, as experienced in recent months, has taught us to look ahead a few days only. Because our energy is limited, it is difficult for us to go places, for many things we have to ask others for help Fortunately we have neighbours who are prepared to help us in any way, hovering around us like angels. Also our sons, family members and nearby friends are very supportive and helpful. But still it is difficult for us to accept that one can't do everything or go everywhere as before.  Almost every day we receive messages (letters, postcards, emails, phone calls, etc) from relatives and friends in The Netherlands and elsewhere in the world. It is difficult to describe our gratefulness for all these signs of love and sympathy, friendship, spiritual support. We feel overwhelmed by this wonderful and continuing stream of communications showing your love, care and attention for us. We hope you can accept that our response is restricted to circular letters like this one. It is impossible to respond to each message individually. Within our limitations, we will try to keep communication with you going. We send you our warmest greetings, Gerard and Lucie -------------------------------------------------- Gerard en Lucie Dulfer - Luijendijk Sint Andriesstraat 18 3811 HT Amersfoort The Netherlands  Tel. + 31 33 479 99 50 Email: dulfer@xs4all.nl