Timeline:
August (late): |
| September (early): had some massage. |
| September (mid): sees Dr. in Quesnel who suggested ultra sound. |
| September 15 (AM): sees Dr. Susan Ackland in Vancouver for lump. |
| September 15 (PM): goes to ultra-sound that evening; Dr. Janson (radiologist) is concerned so he fast-tracks Sara into an MRI and CT Scan with Biopsy. |
| September 16: Dr. Ackland tells Sara and Brad to go away and enjoy trip to Precipice. |
| September 27: Sara back from Precipice. |
| October 6: 9:00 AM - MRI |
| October 7: 8:00 AM - CT Scan and Biopsy. |
| October 10: "It's not good news . . . -today we found out that Sara has a cancer called Desmoplastic Small Round Cell Tumour - Long Day follows - lots of phone calls and crying (PM) - Sara wants to have a life affirming "tumour party" with cheesecake, scotch, friends, family to"humour the tumour" |
| October 12: Thanksgiving with Family. |
| October 13: Lee flys in from Precipice. |
| October 14: REALITY - meet with Sara's oncologist Dr. Meg Knowling and find out all we can know and more about DSRCT. We are told that the "odds" are 50% but that we will work towards total remission with all the tools available to us |
| October 14 (PM): family time, and fears and preparations. |
| October 16: meet with Dr. Knowling and get info from Sloan-Kettering and City of Hope. At this time get a change in chemotherapy protocol - "VAC" and"HIPE". |
| October 17 (AM): Brad has conference call with Nancy Mason (Sara's Aunt) and John Douillard (vedic medicine healer) re: Sara and how best to see her safely through the chemotherapy so that the chemo can work and Sara can keep her strength and health up. |
| October 17 (PM): Brad and Sara go on a two day "holiday" to the Bayshore Hotel to pretend that they are in a different city to have some time alone together for the first time since this all began. |
| October 22: Sara has first chemotherapy treatment - "VAC" and is quite ill later that night. Brad stays in hospital overnight. |
| October 23: Sara has second half of her "VAC" and stays one more night in hospital. She does not feel very wall at all. Brad stays with her in hospital again one more night. |
| October 24: Sara decides that she can come home this night because she is feeling better. The night is rough and not a little scary at first but calls to the BCCA resident on call and help from the Mom (Pat) and the Boyfriend (Brad) get Sara through. |
| October 25: Sara is still not feeling great today but sleeps most of the night through. |
| October 27: Sara is starting to eat more solid food. |
| October 29: scared, tired, angry but still going forward. |
| October 31: Pat cuts and Brad shaves Sara's hair down to 1/2 inch- this gave Sara some control over the fact that her hair was beginning to fall out from the chemotherapy. |
| November 1: Brad and Sara move into their new apartment. |
| November 2: Sara into BCCA for a blood transfusion as her platelettes are low. |
| November 3: Sara sees naturopath for more non-conventional supports and has a great meeting and feels very positive and supported. |
| November 7: Sara shaved her head bald tonight. She did it mostly herself. |
| November 10 through November 14: Sara goes into BCCA for her second chemotherapy protocol - "HIPE". This will be a five day stay. For the first night Brad stayed overnight. Sara was only really sick Monday Wednesday and Thursday. Brad also stayed over on Thursday night and then Sara can home on Friday. |
| November 15 through November 18: -for the last few days Sara has been taking her anti-nausea drugs but as of the 18th she has decided that she did not want to take any more because she was feeling better. |
November 25: PM - Sara has a slight fever (37.5) but nothing to worry about. Am getting a prescription for tantum for her sore mouth. |
| November 26: -Sara's Hickman Line scar looks a little infected. We saw a doctor at the BCCA who gave Sara a prescription for a broad band anti-biotic. |
| November 28: -went back to BCCA to see Dr. Knowling; she said that Sara's counts and her Hickman line are fine and that she will be able to start her chemotherapy (VAC) on Tuesday - even if her counts are still a little down. |
| December 2: -Sara has a CT scan today and then is admitted for her chemotherapy -Dr.Saretsky came and told us that Sara's CT-scan looks like the tumour "may be smaller". She also told us that Sara's stem-cell harvest will occur sometime soon as soon as her counts are up and there are enough stem-cells in the peripheral blood. -Sara's CT scan also told us that there a few tumour spots: - the main tumour, two smaller ones in the lower abdomen and then some seeds in the "fat curtain" of the belly. These will all be removed during Sara's debulking surgery, still tentatively set for December 29, 1997. |
| December 3: -Sara has not been nauseous hardly at all this time through. We figured out that the main drug that made her so sick and agitated last time was the 'stemitil'. So far the nabilone (THC) has not affected her adversely at all - this is excellent news. |
| December 4: -Sara is still doing well. I (Brad) spent the night in hospital with her last night and she will be going home this morning. By the time that she gets home I will be on my way to Kitimat to do a X-mas show (with Pat, Mikey and Marlee) but I will be home on the 9th. |
| December 5 through December 9: -Sara has had a good week and has not been sick at all although her white blood counts and her hemoglobin are low. |
| December 11: -Sara needs a blood transfusion because of her low hemoglobin; she is tired but she is doing okay. |
| December 16 and 17: Tuesday the 16th was the day that Sara had the first part of her Stem Cell Harvest. The first day went okay but they did not get enough Stem Cells from the blood so she had to go back on the 17th as well. This was okay except this time they had a harder time finding the vein - it was uncomfortable because of that but otherwise the whole thing was quite painless and simple. |
| December 18 through 27: Enjoying X-mas. We were able to even get out and get all the shopping done without much difficulty. X-mas has been busy with lots of visitors but a welcome reprieve. Tomorrow Sara starts pre-surgery preparations (i.e. - clear liquid fasting and stomach and colon cleanse. Not pleasant but necessary so we will try to keep her busy and her mind free of worry for awhile anyway . . . |
| December 28: Today we have found out that Sara will - for sure - be going into Vancouver General Hospital tomorrow morning at 6:00 AM for her debulking surgery. She will probably be in for approximately one week I shall endeavor to let you know a.s.a.p. |
| December 29: Sara's surgery went very well. The surgeon told us that there were no surprises. The tumours were removed from Sara's abdominal wall and the greater omentum (fat curtain of the belly) was removed as it was tumourous as well and a small section of bowel was taken out but nothing that Sara would miss. |
| January 8: Sara came home today. She is doing well but is still very sore. |
| January 12: Sara went back into the Cancer Clinic today for another round of chemotherapy. She will be in for 5 days. So far everything seems to be going well and Sara has not been nauseated at all this time - probably due to the inclusion of nabilone (THC) in her anti-nausea regime. |
| January 13: Sara is still doing very well and is suffering no nausea at all - so far!!! |
January 16 through January 20: A lot of this is due to the chemotherapy drugs, anti-nausea medication and the pain killers from the surgery - she has never been one to drink or smoke or do anything like that very much so she found the pain-killing regimen from her debulking surgery a little overwhelming. These are not things that are worrisome, but they are things that do take time and energy. It is now Tuesday night and Sara is much calmer and more herself. It has been a difficult few days, but with great support from the BCCA and Sara's GP (who made a house call on Sunday to see Sara and help with the anxiety and disassociation caused by all the drugs) we are now through to the other side. Sara is still very tired and it will be awhile before she is up and at it again, but for now she is simply working on getting the energy and strength back to tackle the next bout of chemo in two weeks (Feb 2nd). PLEASE as you read this do not fear - if you or someone you know are going to go through chemotherapy know that it is what is necessary and that you will make it through. |
| January 29: Today Sara went in for two units of blood today - her hemoglobin was a little low. We hope that this will make her feel a little better. Also today we are going to Victoria - I (Brad) have a show to do so this will give Sara a chance to go and see some of her friends and teachers. |
| January 30: Sara had a great time in Victoria. She was able to visit her teachers at UVIC and see some friends and spend the night with her sister Jenny. She will come home tomorrow. |
February 1: Today she also did drew some pictures about her experience during chemo - I will post them . . . |
February 2: Sara has found this very disappointing because she has spent the last two days really trying to get her energy up so she could go in and, again embrace the treatment |
| February 9: Back for the final HD-VAC chemo - finally. The week off has given Sara plenty of time to prepare, although she is still anxious that her treatment schedule has been set back a week, but Dr. Knowling said that her Stem Cell replacement still might occur on schedule. |
| February 10: Today Sara finished her last HD-VAC. Moments after she finished her last bag she look at the nurse and said that now there was only the "mother-of-all-chemo's" left but (she said) "I can handle five days of Hell to have the rest of my life back ... but then again ask me in three weeks!" |
February 11: RE: The Telethon - Sara will be opening the Telethon on Saturday at 8:00 PM and then sing and close the Telethon on Sunday at 4:00 PM. The Telethon runs Sat the 14th through Sunday the 15th on BCTV. ALSO - SARA'S Stem Cell Replacement IS SCHEDULED FOR MARCH 6TH .... |
February 13 - 15: On Sunday Sara hosted and sang her song (written by Michael Booth Palmer) with Michael Booth Palmer, Bob McGrath, and everyone and the band and choir. She was excellent and it was an opportunity to tell B.C. about this cancer and Sara's battle against it. By the end of the telethon Sara was very tired but she felt as though she had made a difference. We will try to put some more info about the telethon up at a later date. Oh, we also got to visit with Mitch Phellegi ("Asst. Dir. Skinner" from the X-Files - he is a very, very nice person). |
| February 20: This morning at 3:00 AM we I took Sara into the BCCA - she was running a fever of about 38.3 ° C. By the time we got to the clinic her temp. was up to 38.7 ° C. She was kept in over night (morning really guess) and then at about noon she was admitted to a room in the clinic to be kept in for anti-biotics and fluid support. |
| February 24: Today Sara was allowed to go home. Her temp. was normal yesterday but they wanted 48 hours without fever before sending her home. Sara was very tired and upset about having to be in the hospital. She knows that in two weeks she'll be going in for 3 - 5 weeks and that already scares her so spending this time in bed was "not ideal". But she is now home and looking forward to enjoying the next week and a half as much as possible - though she is still a little tired from the illness she had (as of yet undetermined - although we were told that 50% of the time a cause is not found, cold? flu? infection? - and sometimes it might just be that the patient's counts are too low - Sara's white cell counts were down to 0.1 (very very very low!)). |
Stem Cell Replacement Therapy Note: the dates in the brackets (e.g (Day -7)) are the countdown days to Sara's re-infusion of Stem Cells (i.e. "Day 0") then each day after that will just be the wait for her counts to come back up so she can go home. |
March 6 (Day -7): The reason for this treatment is to make sure that there are no cancer cells in the cerebral-spinal fluid. Unlikely in Sara's case but done as a regular part of the BMT/SCRT protocol.. It was a scary way to begin all this and all of a sudden we were reminded of the seriousness of this fight. Sometimes it is very easy to let everything become abstract and distant - even when talking about possibilities and very real side-effects, damage etc. But all of a sudden starting this final and very scary procedure brought the last 5 months kind of "crashing down" as Sara put it. We had a bit of a cry and talk and now feel ready to go ahead - one step, one day, one breath at a time . . . |
| March 7 (Day -6): Today Sara started her VP-16 (etoposide) chemo and it will run over a 26 hour period (as I said before - HIGH DOSE CHEMO). She has not been sick at all. The anti-emetics she is taking are: nabilone (THC), dexamethasone (decadron), ondansetron, and maxoran with benadryll. So far this is working well although it does make her tired and sleepy. |
| March 8 (Day -5): First day of three days of cyclophosphamide (High Dose) Yesterday p.m. Sara began to run a high temp. so she was given some anti-biotics to deal with it. It was thought that she might also need a chest X-ray but that ended up not happening. We were told by the nurses to expect that Sara would be probably sent for a chest X-ray at least once. A soon as a temp runs high the X-ray is necc. to make sure that there is no chest infection. Also blood gets taken before and after each dose of anti-biotics so that the amount in the blood is just what is needed to work and no more so as not to tax the already over-worked kidneys and liver (with all this HD-chemo there is of course always the worry of damage to the organs BUT the protocol does include drugs that help the body flush everything out before it does any permenant damage. |
| March 9 (Day -4): Sara's still doing well but is getting more and more sleepy and dopey. It bugs her a bit that she can't focus on things very well or very long but the fact that she is not in a lot of discomfort or pain yet is very gratifying. |
| March 10 (Day -3): -good day, no nausea but tired, bored and feeling dopey. |
March 11 (Day -2): 9:15 AM - first TBI. It took a lot longer than usual because thy had to do some more films ("x-ray" but really gamma-ray) to make sure that the markings for the lung plates that are used to protect the lungs from too much irridation were in the right places. After this the appointments should be a lot faster and only take 15 - 20 minutes lying on the floor (mat). Sara is given 100 centigreys on the front and then another 100 centigreys on the back for a total of 200 centigreys total body irridation (2x/day X 3 days = 1200 centigreys) {Note: Dr. Grey was the name of the man who invented the centigrey scale used to measure radiation in tissue (as opposed to rads which measures radiation in air)}. THe rad. source is Cobalt 60 (Co 60) and it is what is used for the films and for the TBI. Sara did well afterthis first TBI. And no side effects so far from any of the treatment. P.M. - TBI #2 went okay. Sara is sleeping mostly but still feeling no bad side-effects. In some ways this is a curse because she doesn't really "feel" sick enough to be kept here at the hospital - also there is still the anxiety of the unknown PSC infussion - maybe after Friday som of the weight (and wait!) will be releived. |
March 12 (Day -1): P.M. - this evening Sara threw up for the first time. I think that some of it is anxiety and fear and wanting desperately to go home and desperately to survive all of this. After she threw up the nurse gave her some IV ativan and later some other anti-emetics. She slept most of the night and I (Brad) stayed overnight with her to prepare for what tomorrow would bring. |
March 13 (Day 0): All in all Sara did really well. She did suffer a very painful migran-like headache after the stem cells were re-infused and did need morphine. She was very anxious with this intenese pain and was very sensitive to any tough or sensation - but this lasted only 20 to 30 minutes and then (with the help of some ativan and the morphine) the pain was dull enough that Sara slept most of the rest of the night through. PROVERA - on Wed. Sara started her peroid but because her platelettes are so low the Doctor decided to put her on Provera (progesterone) to stop her cycle until she's done wit htreatment and her platelettes are at a normal level again. |
| March 14 (Day +1): Sara's counts have bottomed out and she's feeling really blue. The things that are hard for her are the feelings of being trapped ith nowhere to go. She can't go home, she can't get away from the pumps and the machine noises, etc. She would REALLY like to go home. Sara feels "anger"/frustration when anyone leaves to go home because they CAN leave and are going to their homes while she CAN'T. She also wishes that there was some way to speed up time so she'll get home faster - it's hard. |
| March 15 (Day +2): Sara's doing okay - starting to get a pasty mouth and still feeling blue. |
| March 16 (Day +3): Sara's still feeling emotional and wants to go home. She also said that she would like me to be with her 24 hours a day but also that she realizes that that is not toptally feasible. Her platelettes go really low today so she had an infusion and now she is starting to get bad mouth sores. |
March 17 (Day +4): Sara did have some other questions and here are some of the answers . . . Q - "Am I in remission? I don't know if I can be happy that I don't have cancer anymore . . . ?" A - Remission means"no visible sign of the cancer and no symptoms" ... therefore, Yes you are in remission until something shows up (if ever) Q- "Then why do this treatment?" A- "Up front treatment is always best (for any cancer) in the obtaining of good results. This PSCRT is used to ensure a longer, prolonged and durable remission (i.e. longer and more durable than the initial chemo because this treatment really goes after the microscopic disease). Q - "Do other people get this treatment for DSRCT?" A - Yes they do. Now there are no "numbers"/stats etc. but this treatment is being used also by reason of looking at other similar and related cancers (comparatively) and how they respond well to this HD-chmo and TBI. Also, DSRCT responds well to the cyclophosphamide, VP-16 (etoposide) and the TBI (especially the TBI).. |
March 18 (Day +5): Today Sara started the gcsf shots to help her WBC count come up (and to help regrow her bone marrow in general). Sara said that if her counts went up even to 0.2 (they have been at 0.1 since Day 0) then she would feel that she had some assurance that they were going to go up for sure . . .. |
March 19 (Day +6): TODAY Sara's WBC count was up to 0.4!!! We were told that they may go down again, but probably not to 0.1; Sara was quite relieved - I laughed and smiled deeply throughout my soul at her reaction when told. |
| March 20 (Day +7): Sara had a very good day yesterday but today her sore throat is alot worse. I stayed over night last night (that seems to make a difference in how well she does the next day). Sara's WBC count did drop down to 0.2 today but that could just be to dilution and use throughout the body - it was expected and therfore nothing to worry about. Her hemoglobin is low though and she'll need another 2 units of blood. |
| March 21 (Day +8): "I made it to the week-end - last week-end it didn't seem possible . . . " said Sara today. She's feeling emotionally much better but her mouth and throat are still very sore. Dr. Sheppard (the BoneMarrowTransplant head-honcho) said that Sara will possibly be going home in 5 days (Day +13). The nrses said that it was Sara's excellent attitude and support that she is getting that are making her recovery so quick. |
March 22 (Day +9): Sara noted that she must be feeling better today because she's making alot of jokes (and she made some phone calls as well ...!). |
March 23 (Day +10): Today Sara's counts did go up to 1.0 so that is good news. |
March 24 (Day +11): Today Sara's counts went up to 4.3 so that is excellent. Alot of her meds were discontinued and they are going to try and d/c her morphine as fast as they can (i.e. without withdrawl and anxiety) so that maybe she will be able to go home tommorrow. They also still are not sure what her ANC (the count of the mature blood cells) is yet. They have stopped the Neupogen® so conceivibly her counts could drop (but not below 1.0 ) over the next couple of days. P.M. - Sara is quite upset . . . she wants to go home now - the end is within reach but what if they tell her tommorrow that she can't leave? The nurses say that this is a normal reaction but also it is partly that all of her meds have been dropped. Sara is even free to leave the isolation ward (6W) and go for a walk. Tonight we went down to the 5th floor loungae and went outside onto the deck - the first foray outside since she can in almost 3 weeks ago. Awhile ago Sara joked and said to the Dr.'s that she wanted to be home by Day +12 - maybe she will make it. So far she has had no complications whatsoever. I will stay the night with Sara to make sure taht she is okay after being "d/c"ed from all her meds. and hopefully to take her home tommorow morning. |
March 25 (Day +12): HOME AT LAST . . . Also (and this is normal) she is worried that maybe it's not over. Is she in remission? Well . . . there is no visible sign of the cancer, and this last round of chemo and the TBI should have taken care of any microscopic disease - BUT there is no test for DSRCT - there is no blood test, no screening, etc. the only "test" is that it doesn't reoccur. This is truly what they mean when they say "living with cancer" . . . but it is my hope that we will soon be able to think about (to quote a wonderful woman who wrote me a while ago) LIVING A LIFE IN REMISSION . . .. NOTE from Brad : I will keep you all posted as things happen and if we get any more info. Also know that I will maintain this site and continue to find out what I can about DSRCT and its treatment - so if you have questions PLEASE feel free to send them and I will try to answer them fromour experience with this as much as possible . . . until later then . . . . |
April 25: Sara has been quite depressed - partially because she was dealing with a depression from the beginning of all this but also because (say the BMT doctors and the oncologist) that the chemo also affects the brain chemistry and therefor the coping skills of the patient. But now Sara is doing better and is seeing a counsellor at the cancer clinic as well as a specialist who deals with young people faced with a life threatening illness - this is helping alot. on April 7:
This Tuesday is Sara's 1st CT Scan . . . we are all a little nervous but realistically know that there should be nothing there; as the BMT Team leader said "What?! You've just fininshed a Stem Cell Replacement . . . of course your in remission!". |
April 28: There will still be things to sort ot and go through but even if there is a recurrance it should not be a problem or threat before the fall . . . I think this will give Sara some time to heal and therefore if there is anything else hopefully she will have the energy and state of mind to deal with it . . . |
| May 4: For the last week Sara has been quite ill. After her CT scan Sara began running a low grade fever and was very nauseated. We called Sara's G.P. on Friday and she felt that Sara was dehydrated from the chemicals used for the CT Scan (gastrographin - it makes the guts "light up" on the scan. So for the week-end we have been hydrating Sara but today we saw the Dr. and she feels that Sara has an ulcer (apparently common after surgeries, chemotherapies, and obviously stress) so Sara is back on ranitidine and hopefully tat will take care of teh pain and nausea she has been feeling. The dehdration has now been mostly taken care of but with the stomach pain it is hard for her to really feel like drinking or eating anything . . . though the Dr. did say that with the ranitdine Sara could be feeling releif as early as tommorrow. . . |
| May 11: Made an appointmnent for Sara to see a gostro-intestinologist as Sara has not been able to keep any food down for the last while. Sara has been spending most of her time sleeping and/or lying on the couch. It is a worry in that Sara is keeping nothing down and not getting the proper nutrients. |
| May 12: The doctor Sara saw suggested 'Prepulsid' which is a antiacid ... she is eating a little bit more but not much. |
| May 15: Today Sara was admitted to the acute care ward at Vancouver General Hospital. She has not been able to keep anything down for the last week and is still getting worse. (At the moment I (Brad) am up in Wells/Barkerville so this is very distressing). |
| May 18: Sara got back home today. What it seems it was was a swollen esophagus due to a late reaction from the chemo and radiation. Sara was told she could leave acute care and go home f she was able to get some food down. She did and was allowed to go home - acute care was not the best of places to be and Sara has ahad a rough time ... she really wants to come up to Barkerville as soon as possible and will probably be up next week if she is feeling better - I hope so!!! |
| May 22: Today Sara arrived in Wells. She is home now with Brad (me) and Paxil (our cat). Sadly I had to inform her that her friend Duke Harris ( a young man she met at BCCA) passed away on Wed - the 20th. It is sad news but not a shock - we knew it was coming just not when. Still it is very hard for Sara as it also faces her with her own fears. Duke was a good friend to Sara and the first person with cancer her age who she met and got to know. |
June 2: "It's just a bad patch and sometimes you can't
fix it" Sara has been eating, drinking and actually has gained 5 lbs so is doing well. |
August 22: Sara is doing well. Since last I wrote she has gained back 20 lbs, she has a fine head of dark soft baby hair and a lot more energy and colour. She is still quite tired as far as the scale of 1 to 10 goes but all in all is getting better. In July there was a week where Sara did get very depressed again and actually got to a point where she just coldn't function any more. July 5: Sara finally needed me to stay home from work on this morning. She was very scared and depressed. I talked to her mom and dad and decided that I would just arrange for some meetings with her councellors at the BCCA and with her other doctor asap. July 6: Today I made appointments for next week and then I took Sara up to Prince George ( a near by city) where we took the day shopping and then stayed over night and saw two (2!!) movies !!! Since then she felt like there was something happening that would help her feel better and that there was someone she could go see (it is very isolated here in Wells and Sara felt very cut off from help ( i.e. professional help). July 12 - 18: Sara spent this week in Vancouver with her Dad seeing her Cancer and depressio councellors and is feeling like she has somethings now to think about but also some insight and tools to help her along with all that is going on.
Sara is doing now much better and we are working towards our wedding on Oct 10, 1998. We did have a tense week a while back when my Mom and Dad had to evacuate their home and business in Salmon Arm due to a forest fire that was threatening the town but now all seems well and they are home and we are not so worried ("What me worry?!!") So that is where we are at at this time and I will attempt to stay more up to date as things happen - Brad. |
September : The event was outside and in the evening, but the weather was good and much fun had by all. For us it was a chance to thank everyone for all the support they had given us over the last year and were/are continuing to give us. The new Mayor of Wells (Joseph Jourdain - our first as we were just incorported this spring) gave a small speech and talked about the importance of community and gathering together at times like this ... it was wonderful. The last part of september involved moving back to Vancouver and preparing for our wedding on Oct 10th. |
| September 19: Brad's dad had to go into hospital for emergency surgery today for a ruptured bowel, so Sara and Brad rushed up to Salmon Arm to see him on Sunday the 20th. It was a little difficult for Sara to be back in a hospital situation that brought back so many memories emotional and visceral; but in the end she was very supportive and my (Brad's) father was very happy to see us all. |
| October 10: Wedding Day! It went well and was quite wonderful ... but this is just a teaser ... I will soon be adding a whole description ... pictures included ... Sara was radiant thuogh and the entire day went off without a hitch ... as I said ... wonderful! (and more to come). |
October 27: Sara's first CT Scan When we were talking about it Sara said that the most important thing would be to get an answer - positive or negative - but a definate answer. What returned was a result inconclusive. When she went for the test there was a shadow found in the lower RHS pelvic area . On the LHS of the body where the tumours were removed there was no sign of cancer, but on the LHS lower pelvis there was a "smudge". Unfortunately at the time of the April scan there was some air in the rectum and therefore the scan was no good for comparison, but further the December scan that showed the area and the tumours from before had gone missing!!! Sara's oncologist (Dr. Knowling) was quite upset that she was unable to give a direct and specific answer so now we wait until Sara gets an ultrasound and sees a gynecological oncologist who can give her a physical examination - but it is quite possible that there may just be some thickening of tissue due to some other surgery that Sara has had performed in that area. The gynecologist-oncologist that Sara will be seeing (Dr. Miller) is one that she has been seeing for the past few years for another problem (non-cancer related). At the moment we feel that it will be a negative result for cancer and therefore we wait. With the slow growth rate for DSRCT we may have to wait until the next scan in 3-6 months for an answer - of course we pray for a clean and negative result. We shall keep you informed. |
| November: The pelvic exam has turned up negative, so the "smudge" on the CT could have been nothing or just gas, etc. We are all very relieved. |
April 20, 1999: Sara's Second CT Scan In eight weeks Sara will have another scan. It is this scan that will re-stage the tumour growth and determine the treatment. If the tumours have srunk on their own then just scan again in 2 months. More realistically is that the tumours will be the same or larger ... then Sara will begin immediate chemotherapy - a low dose chemo to control the tumours and keep matastisis away from the organs. If the organs can be kept healthy and the tumours under control she will be able to continue living healthly - except for what the chemo brings. This is a very difficult blow but Sara is dealing with it head on ans head up. She now knows that she has to look at some different goals and a different timeline for herself. She is amazingly strong so far, tommorrow she will see her naturopath - Dr. Chan, to see about fighting this "thief" and extending Sara's life as long and as healthy as possible. |
April 21, 1999: Personal note: when Sara woke up this morning she looked at me and said with a big smile, "I'm not dead yet". And she has also decided that, at the moment her goal is to live to be 30. I beleive that she will do it, and do it with presence and strength. BUT it is very important to her that everyone who is living with this disease or treatment of it remeber that every person, every case is different - it is just that in Sara's case the tumours were not as responsive to the toxicity of the HD-chemo as we hoped - so do not give up and so not lose hope - love Brad & Sara |
June 21, 1999: Sara said that this was not the news she was hoping for but that it has strengthened her resolve and determination to continue to fight this battle. |
| June 22, 1999: Today Sara went and saw her naturopath (Dr. Chan) and he was hopeful. It is his feeling that the tumours may only have swollen (due to the fact that Sara's immune-system is trying to kill them) and that they may be dying rather than growing. This is better news and Sara is hopeful and has much faith in Dr. Chan (who by the way has been voted Canada's Best Naturopath and will have an article upcoming about him in Flare Magazine). |
July 06, 1999: There are days when Sara is scared of course, but she is fighting hard and all in all is doing well, is still working acting and singing all week in Barkerville and even (starting tonight) begining to do "power yoga". Everyone is amazed at her strength, as am I. Thanks again to all of you for all of your support - love Brad. |
September 25, 1999:
On Labour Day the season in Barkerville ended and we left for the ranch that following Saturday. We then spent two weeks at the ranch during which time Jeorg and I helped Lee put up hay and I did a little fishing, and we also had the film crew in. One day early on in the stay Sara and Jenny went to Anahim Lake (the small town where the ranch is 1.5 hours into the bush from) to get a tractor part welded for Lee. WELL - on the way in they rolled Pat's 4-Runner - NO ONE WAS HURT - just a little scrape on the head where the three point arm off the tractor grazed Sara's scalp - but the 4-runner rolled completely over once and had $18,000.00 damage. Apparently they are very loose in the back end without a load and Sara was going about 60kmh and hit some washboard and away it went. She got it under control and just about to a stop when the shoulder of the road gaveway beneath the slowing back RHS tire and away they went! But they were okay. THEN a week later (September 20th), when the film crew was in filming Sara riding - the horse she was on slipped. Now this horse is a rodeo horse and so when he tried to right himself he bolted and the speed threw Sara and she landed on her head and shoulder and gave herself a concussion - but she was okay other than some blurred vision and doulble vision when her head was turned to the left - this most likely due to muscles and not brain injury. So now. after travelling some 2000 KM from the ranch back to Wells to get our stuff and back to Vancouver (with a stop over in Hope) here we are. Already Sara has appointments booked to see Dr. Chan - she wants as much info from him before going back to the Cancer Agency for another scan (mid- Oct?). And we are also getting ready to say good-bye to Jenny (Sara's sister) and Joerg (Sara's brother in law) as they are heading off to Germany for 1 to1 1/2 years for Joerg to finish his degree in Social Work. |
October 31, 1999: A Brief History (again?) of Dr. Chan and Sara
Along with IV vitamins, DMSO, and (sometimes) laetrile Sara is receiving a "hypo-glycemic" treatment that starves the cancer cells of sugar (which they need to survive) and she is also trying out a urine therapy treatment that is used in China (by Dr. Chan's father) that is the keystone to the treatment of a Dr. Burzynski who is from Texas and has created a treatment using what he calls anti-neoplastin:
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November 2, 1999: Through Dr. Chan Sara has been having monthly Infrared scans and she was aware that there seemed to be some tumour activity on the RHS of her body. - There was a small dot on the last CT that is now larger. - The tumour in the inguinal crease is larger but not affecting the bone but is pushing up on the psoaz muscle and making it uncomfortable. - the tumour that is back near the kidneys has not affected the organs but has began to push on/block the ureter (the drain from the L kidney into the bladder). So this will need a small day surgery to put a shunt into the ureter to open it and return kidney function to normal - OR maybe some radiation to shrink the tumour. - however there are some new tumours in and possibly on the liver. 2-3 inside and one on or at the very outside of the organ. This is what Sara is most upset about because this is the hardest to do anything about and can have the strongest affect on her health IF the cancer continues to progress. I say IF because Meg suggests that there is a possibility of chemo. A secondary low does of iphosphomide sometimes shows results in DSRCT. Although any HD chemo is out of the question. So this has not changed much in how we are approaching Sara's health. She is still living with cancer and trying to fight this thief and be rid of it - or at least control it. Meg, even, was positive regarding the treatment that Dr. Chan is prescribing saying that it hopefully will set back the cancer. |
November 9, 1999: The urologist will insert a stent (a small tube) through the urethra and into the ureter and that will keep the ureter open and maintain proper healthy kidney function. This is important if Sara is to continue with or re-evaluate and re-start any kind of chemo-related treatment. |
November 16, 1999: Sara says, quoting a friend, "This is not to get rid of them ... it's more like clipping your toe-nails." The long term side- effects are sterility and 5% risk of bowel damage - although the radiation will be well within the limits of bowel tolerance there is always a possibility of some damage |
| November 18, 1999: Today Sara had her "Planning CT": to set up the radiation therapy. |
| November 19, 1999: Sara went into VGH today to have the stent procedure but was sent home - the procedure cancelled due to ER surgery. This is a bit disapointing because there is a time issue. The radiation therapist is concerned that treating the tumour near the ureter could scar the ureter itself and therefore would like to see the tent in place before begining treatment .. and as always the sooner you begin the better. |
November 25, 1999: So tomorrow morning Sara will have to undergo yet another procedure called an "internal/external perc implant": this involves putting a tube (the perc) into the kidney through the back of the body. Once the tube is in then it is threaded through the kidney to the ureter opening and then down through the ureter and into the bladder. Once in the badder the tube coils itself a bit and has small holes that allow the urine to drain. Back up in the kidney the tube does the same thing but then contiues out through the back and, after drainage has been insured and sped up with a foley catheter bag, then the tube is capped and all works as normal - except the small tube out the back for a few weeks - to make sure that there are no problems and to have access to drain if need be. |
November 26, 1999: PS (NOVEMBER 27, Sara is now at home and doing okay - just sore and tired) |
| December 3, 1999: today took Sara to a clinic to have her chest looked at. She was having some chest pain, but it is just muscular. Due to the fact that she has had restricted movement and is sleeping in a different position due to the perc her intercostal muscles and shoulder are seizing and cramping. Also acid reflux from the forced sleeping position. The Dr. suggested antac and ibuprophen for the reflux and the muscles (in that order). |
December 6, 1999: 2:45 PM Sara had her first treatment of radiation. 4:00 PM Dr. Chan wants Sara to come out every day that she is taking radiation and have a bag of hydrogen proxide (H2 O2). The reason? - radiation therapy depletes the body of water H2O and oxygen O2 - when two H2O2 molecules break down they become 2 H2O and one O2 molecule - and we know that cancer does not lke oxygen. Also H2O2 apparently helps focus the radiation beam. It has been a long day but Sara is doig alright. Oh yes and to help combat the nausea we have received an information package from the Compassion Club and I have made Sara some organic, no sugar, marijuana cookies. We felt that it was better to go natural as much as possible although 1/2 hour before each treatment Sar a will take a Zofran as well. Sara's Doctors have supported the marijuana and even signed a legal document that is a perscription (supplied by the Compassion Club). I will include some more info about this when I have time but for now check out their web site: The Compassion Club. |
January 2, 2000: The treatments went very well. For the first while the tumour in her hip casued her pain when she was lying on the bed but that got better as time went on. The only other chronic problem (other than slight nausea and malaise) was back pain from Sara's perc insert. The rdiation started so soon after (the same day!!!) that Sara had no time to get any massage or chiropractic (NOTE: be careful having chiropractic if you have cancer ... there is some speculation that chiropractic can cause metastisis and therefor always tell your chiropractor first ... the same applies to deep muscle massage). The result being that Sara has had a very sore back - so she was perscribed dilaudid to kill the pain. Earlier on a journalist from one of our newspapers "The Province" followed us for a day to write an article about a day in Sara's life doing radiation and naturopathic treatment, etc. Basically a day in the life .... it ran on December 29, 1999 and was a three page spread all about Sara - her cancer - the upcoming documentary airing March 15th on Global in BC and then on Vision and WTN later (dates?) I will announce it. I wil also try and post the paper article or link to it when I can find it on their site (www.vancouverprovince.com). So that's about it for now ... we are resting up from X-mas visiting and enjoying having family around (Jenny and Jeorg are back for 2.5 weeks from Germany) and looking towards what will be next. |
February 11, 2000: So with that in mind Sara has been seeing the pain specialist at BCCA, a Dr. Pippa Hawley - she is a very wonderful person, very compassinate yet also extremely capable from what I have seen so far and have been told by others. Dr. Hawley has been tring to find out what the source or cause of the pain is - neurogenic? muscular? etc. so it has been a bit of an ordeal. With each new drug there is a waiting period to check efficacy. Initially Sara was taking liquid hyromorph-contin (Dilaudid) an opiate. But she found that the liquid though fast acting was not long lasting and therefore she was not sleeping at night so she was perscribed a long acting pill form with the liquid as breakthough medicine for times when the pain spiked. Unfortuantely Sara very quickly topped out on the Dilaudid - she was begining to twitch and found that the pain just was not getting better. The next step was a patch - fentalnyl (Duragesic). That seemed to work at first but was not high enough a dose so we had to up the dosage. But with each change in med's there is a check it out period and during that time Sara's pain, lack of sleep and anxiety was increasing which causes a vicious circle pain -> anxiety -> heightened pain awareness -> anxiety -> pain etc. So yesterday Dr. Hawley also perscribed Ativan (lorazepam) an anti-anxiety drug and for teh first time in about two weeks Sara got a good night's sleep (even after napping for three hours that afternoon). Whew. But that's not all ...! In the middle of all this, on February 3 we had to go to Emergency at VGH because Sara's left leg had swollen. We had been warned to keep an eye out for swelling because a clot may form from the tumour and radiation at the top of her left leg. Well, we went in and had to wait from 11:30 pm until 8:00 Am before she could get an ultra-sound. Then it took almost two hours to do the proceedure because the student who was to do it didn't prepare - she hadn't read that chapter!!! Anyhow - the result was no clot. When Meg (Dr. Knowling - Sara's oncologist) got over to VGH she explained that because Sara had done some exercise and stretching that afternoon it had probably not only heightened blood flow but also irritate the area a bit. What to do? Elevate the leg if further swelling occurs and after exercise as a matter of course. |
February 15, 2000: If these two options do not work then it will betime to consider a "walking" epidural - which would mean having another flexible needle/tube sticking out of Sara's back, or a cordotomy - wherein a part of the spinal cord that sends pain messages is cut, but that is very permenant intervention. At this time we will try the methodone and see what happens. |
| February 18, 2000: Sara had a CT scan today and will get the results on Monday the 21st. So far the methodone is keeping her pain in control, and Sara feels that the Decadron has relieved the swelling. |
February 21, 2000: Unfortunately the mass on the liver has grown (from 2 to 3.5 cm) and there are more masses on the liver. Because Sara had such High Dose chemotherapy before and this divergent DSRCT did not respond there is probably no real reason to do anymore chemotherapy - it would only make Sara feel ill and probably not be very effective if at all. There is also some more tumour growth in the interperitineal space behind the left kidney - an area that was not radiated. When asked if there is any prognosis regarding time Meg could only say that the median survial is two years (i.e. half of people diagnosed live 2 years - some longer - some less). This was the same prognosis as in November. But medians are only statistics and not individuals - Sara herself said that she want's to at least live to be thirty (4 more years). |
February 25, 2000: In March Sara wil be going to a retreat on Vancouver Island for cancer patients called Callanish. She is looking forward to that, and we she see where life takes us from there. |
| March 7, 2000: Went to see the pain specialist today. Sara has been feeling some different pain that has been diagnosed as a result of the tumour near the back pressing on the nerves of the T12 vertebra and inflaming the area around the LHS 12th rib (the medical term for this type of pain is radiculopathy). A low does anti-depresant that works on neurogenic pain will be tried. |
| March 9, 2000: The anti-depressant for the radiculopathy was just making Sara tooo sleepy so she has gone back to taking dexamethasone (a steroid used in fighting nausea during chemo) as it seems to be working best. |
March 9 - 15, 2000: The days began with a qigong/meditation session at around 7:45 AM before breakfast at 9:30 AM. Followed by group sessions each morning. In the afternoons there were individual sessions such as individual counselling or sound sessions, massage, art or Therapeutic Touch, or private time. Then late afternoon and evening sessions ending each day around 9 PM. There is also a paliative care specialist there to help answer any questions about treatment, meds, etc. All meals provided were as organic and vegetarian as possible. The goal to emphasize healthy nutrition. The retreat itself took place at the Swanwick centre on Vancouver Island. It is situatted on 32 acres of waterfront property that look out on the Juan de Fuca strait and the snow-capped Olympic mountains of Washington State across the Pacific Ocean border. Nature trails beginning from the Main House and Gate House wind their way through gardens and forest to the ocean. The setting is private, quiet and extremely restorative. As said above the retreat was a very private experience so there is not alot more to share - needless to say it has had an excellent efect on her well-being. |
March 28, 2000: This was the first time that we had heard about lesions other than the big tumours and thse on the liver. When we last saw the oncologist the whole radiologst's report was not yet available. Now we have all the info: There has been a significant progression of the hepatic (liver) metastasis and serosal lesions surrounding the liver and spleen since November 1999. There has been a decrease in the size of a mass overlaying the left psoas muscle and the left side of the pelvis (<-- this decrease means that the radiation during December worked as expected but again can only be a paliative measure as the organs cannot sustain the ammount of radiation that was required to shrink the tumours back). |
April 6 - 10, 2000: This time we went to Tofino and Ucluelet on the west coast of Vancouver Island. For the first two and 1/2 days we stayed at the amazing Wickanninish Inn. While there we beachcombed and played Tai Chi on Chesterman Beach, enjoyed a phenomenal meal at The Pointe Restaurant On the Friday (after breakfast in bed) we each took a spa at the Ancient Cedars Spa. They have an amazing spa and it must have been deemed that we go for the synchronicity was profound. My spa treatment was by a man who himdelf does tai chi and we spent some fun time sharing but more so - the woman who gave Sara her spa treatmet has had experience working at the Simonton Cancer Centre, she also has been involved with Hope House (a Vancouver based cancer support group) and she has treated women with vulvar vestibulitis, women who were referred by sara's gynecological specialist Dr. Dianne Miller. Wow!? So needless to say it was quite an experience the "Sacred Sea Thallasotherapy" treatments that we each partook of. Then we spent the next two days visiting with friends Carl and Silva in Ucluelet and went bechcombing Wickanninish and Long Beach, enjoyed a traditional swiss fondue (Carl's dad's famous recipie) and then home again home again feeling very relaxed. It was hard to leave. |
| April 12, 2000: Sara has stent replaced in left ureter. |
| April 13, 2000: Dr. Meg Knowling (oncologist) and Dr. Pippa Hawley (palliative care) suggest localized radiation treatment for teh tumour that is pressing on the nerves at the T12 vertebra and 12th rib joint. |
| April 14, 2000: Dr. Karen Gottard (radiation oncologist) wants Sara to have an MRI this weekend to see if it is possible to do the radiation without crossing onto the area that was treated in December. |
| April 17, 2000: Sara's abdomen has swollen over the week-end (4 - 6) pant sizes. No fever or chills so probably not due to the stent surgery. Get ultrasound for Tuesday (18th). |
April 18, 2000: Dr. Gottard called and said that some radiation might be possible. We will find out tomorrow. |
April 19, 2000: Radiation Oncology called and wanted Sara to go in for mapping after her meeting with Meg. She went up and the tumour was mapped out and she had the first dose of four doses of localized radiation on her spine. After the radiation Sara then went into medical daycare for a peresentisis - 1.8 litres of fluid were drained but the swelling did not go down right away. |
April 25, 2000: Meg's feeling is that Sara may have less time than she thought. Sara had had a feeling that she might not live long past her birthday of February 2001, Meg suggested that that might be over optimistic and that a more reasonable timeline would be October 2000. |
April 26, 2000: There appears to be 4 litres of fluid still there so will try another tap on Friday. |
| April 28, 2000: Sara in medical daycare for second peresentisis - this time ot 2.7 litres out and Sara's belly looked less distended and felt much better although her muscles are still sore from being so quickly pushed out of shape. |
| May 01, 2000: Sara has not felt well all weekend so her chiropractor made a house call and gave her some massage and adjustments and she immediately felt and looked better. Most of the discomfort at this point seems to be related to the fluid build up and the muscle trauma that that caused. So far so good though. |
| May 09, 2000: Sara has been set up through the Vancouver/Richmond Health Board for the Home Hospice Program - which means that from here on in any care or tests (excpt obvious hospital proceedures) can occur here at home and if every an emergency arrises and Sara needs hospitalization she can tehn be sent into a palliative unit rather than emergency and acute care (if you've experienced this you will understand our relief). |
| May 15, 2000: Sara ia in today for another parasentesis - 6 hours but this time removed 3 litres total !!! |
May 23, 2000: The blood and clots in Sara's urine are probably a delayed reaction to the radiation she had in April- radiation cytosis (an irritation of the bladder) - it will go away on its own It is hard to tell what the lumps are - the sternum could just be swollen and irriated at the joints and teh other may be a swllen gland - we will have to wait and see - but if they are metasteses it would not be threatening. |
| May 30, 2000: Sara has been in a lot of pain from tightness in her neck and right shoulder - trying new pain killers |
| June 03, 2000: We left today for Wells/Barkerville - a 10 hour drive - but once Sara got in the car there was no stopping - let's just get there. We will stay as long as Sara's health permits. |
| June 07, 2000: Today we had an appointment with the G.P. in Quesnel that we had been set up with so Sara had a doctor in the area that already knew what her case was etc. Unfortunately this doctor was very unprepared - she could not seem to accept Sara's palliative state or that there was no more treatment that Sara could take (and tolerate). We initially had this doctor set up so Sara could avoid such lengthly explainations about her medical state and simply get the care she needed. As it was Sara was having trouble breathing and was showing fluid in her belly BUT this doctor barely examined her - just a quick listen to her chest and said "there's nothing wrong ... so just hang in there and I am sure they will come up with something to treat you ...". Out to lunch!!! And then ... well she wanted to discuss spiritual;ity with Sara and when Sara simply said that it was a private issue for her this woman would not let it go and badgered Sara, played wounded ... well all-in-all it was not very helpful. It basically comes down to the fact that this doctor was not experienced enough in this type of care - unfortunately for Sara it was a difficult thing to occur having just left all her immediate medical care 800 km away. |
| June 08, 2000: Sara has dicovered some new and much larger lumps in her right breast - more like masses. |
| June 10, 2000: Called Dr. Daphne Lobb in Vancouver to tell her about Sara's shortness of breath and the lumps - she is going to try and arrange something for Sara |
| June 13, 2000: Daphne is going to arrange a parasentesis for next Monday at BCCA (in Vancouver) and also arrange for a chest X-ray and some exams by either Pippa (pain clinnic) Meg (oncologist) or herself at our home. |
| June 18, 2000: Brad and Sara fly to Vancouver - Canadian Cancer Society in Quesnel pays for flight. Thank you Vikki!!! |
June 19, 2000: PM - The chest X-ray showed that Sara's lungs are 2/3 full of fluid (2 - 4 Litres) so this afternoon after taking off 1.5 litres wit the para' Dr. Howdle dod a pleura-sentesis on Sara's right lung and took off 1 litre. (Only 1 because if it happens too quickly then more fluid may rush in to restore the balance). There is a risk in this proceedure in knicking the lung and causing a pneumothorax (air-pocket in the middle of the chest cavity (ouside of the lungs)) but the post pleura' X-ray showed no problems and Sara was breathing better already. Meg came by to look at Sara and agreed that the masses on Sara's right breast are DSRCT but that they should act like DSRCT and not breast cancer or lymphoma (i.e. - not systemic attack, rather they will just build mass). Meg will check with radiation therapy re: whether or not they can do more palliative treatment |
June 20, 2000: Pippa also saw Sara today and suggested trying to arrange physio to control the pain in the neck and right shoulder. |
June 25, 2000: Jenny arranged a farewell party at the Wells Hotel - giving everyone the chance to come and say good-bye to Sara. There were 80 - 100 people there. Some friends (Ross and Rod) sang and played mandolin and guitar (respectively). We sang some Stan Rogers all together (Mary Ellen Carter and Barret's Privateers) and people said good-bye ... it was very nice. - Sara sat in a big overstuffed chair - kids, adults, friends, aquaintances ... it left little or no unfinished business for Sara in Wells. |
| June 27, 2000: -drove back to Vancouver .... 10 hours (hot day!) ... Sara slept most of the way waking only to eat a little fruit and drink water. |
| June 29, 2000: Carole (our home care nurse) came by for a visit today. She will arrange for the Vanc?Rich. Health Board physiotherapist to call and see Sara re: a TENS meachine for her neck and back. Carole will als arrange for an Occupational Therapist to come in and do an assessment of our home to see what we should/could add to make it safer and easier for Sara to bathe, get around, etc. |
June 30, 2000: A para' has been arranged forWednesday July 5th. Daphne also suggested upping Sara's Decadron(dexamethasone) to 4mg/day - it helps with the swelling around tumours and therefore may help with the pain Sara has been feeling around the new masses (which grew and have grown recently very fast). Daphne also asked Meg what these new masses mean in terms of where, what, how the cancer is progressing. Basically - it may spread it may not. There is not enough information to know and every individual is different. There are no guarantees where it will or will not go. Sara has to be preparred for/ be aware of the fact that it might appear elsewhere but should also remember the her health care team will do all they can to treat the cancer if it is causing her pain or discomfort. They WILL keep an eye on it. |
July 01, 2000: Meanwhile back in Vancouver - very special friend and loving person Megan Bunting stays the weekend with Sara and Daphne arranges for Sara to have oxygen in the house. |
| July 02, 2000: Brad drives back to Vancouver and finishes unpacking. |
| July 04, 2000: Sara has had a bad couple of days. There has been some changes to her pain medication that have left her a little dopey but also, due to the fluid build up in her abdomen and lungs, she has become a little hypoxic (low oxygen level in blood) and therefore has been disoriented and having the odd halucination or daydream crossing over into wakefulness BUT now she is on oxygen 24 hrs/day and that should help also she will be having another parasentesis done tommorrow at BCCA |
July 05, 2000: Already though Sara seems to be breathing easier - eating a bit better and is more relaxed. Blessings. |
July 08, 2000: Sara is nauseated and does not want to eat. Daphne (Dr. Lobb) said that these symptoms are common: the body's reaction to so many changes; body tired therefore pain meds having more side effects; and symptomatic of liver wearing down. Sara today for the first time asked if this was the begining [of the end]. |
July 10, 2000: Sara has been having very strong, vivid 'halucinations' and waking dreams so she was also perscribed loxapine to help calm the nightmares and take the edge off the dreams. |
| July 11, 2000: The maxoran worded very well and Sara's feeling much better. She has also been put on sub-cuetaneous gravol - she likes that :{)} |
July 14, 2000: Sara's work leading up to this point in her life has made this journey a little easier for alll those around her and everyone is doing well. I do not know how much more time Sara needs to be here or has here but do know that she is not caught in struggle or pain - she is peaceful and beautiful as always. - Love Brad. |
July 17, 2000: "I am not this fragile body". Today July 17, 2000 Sara Ann Taylor Gibson left this earthly realm peacefully with much grace and awareness, in her home "as it should be". The body has come to its ending but there is nothing to fear. |
Final Days Final Gifts July 13 - 17, 2000 I have been somewhat unsure about how to approach this very sacred moment of my life and Sara's regarding how to tell it. I think therefore that is is best just to tell the story as it happened. It seems important. I have been told by many that it is something often not shared. I can understand why, yet it somehow feels right to share this. As I review, remember and grieve I feel even more the importance of sharing this with you. Sara was very clear about her death. She was not afraid to die, she just simply did not want to suffer. In that she was clear - and happily it was the case. Please do not take this as any position or politic about dying other than I feel it should be sacred and of the person's choosing (as much as possible). That is all we can do. To leave ourselves aside, to stop grasping, to simply be with the one we love and allow what they need to occur - I feel that is the greatest gift we can give anyone we love living or dying. That said I will now tell you a story ... About 4 months ago (April 2000) Sara was at a cancer retreat (Callanish Healing Retreats - where she met her palliative care doctor, Daphne - truly a blessing). At that time the members of the retreat practiced a meditation called visioning your death. When it came time to share the visioning I am told that Sara was quite clear, and I am happy to say that all she envisioned came to be for her: at home, with myself and Paxil (our cat), at peace and without pain. About five days before Sara died there had been quite a lot activity in our little flat. Sara had called everyone (Jenny, Lee and Pat) to her bedside at one point - at that time I was out to the pharmacy getting medications so when I arrived the family were very teary eyed and said that Sara had been calling for me. So I went into the bedroom and she sat up and said "I want a bath, I want to get dressed and to be on the couch". Wow, and she did - she started moving before I could even get to her. Now you must know that at this point Sara was quite weak and needed help to get around (she had a definite list to port) but away she went. Finally she was on the couch and again she called everyone around again: Jenny, Lee, Pat, our friend Megan and myself. Sara simply lay there holding my hand and playing with my ears and beard as she was wont to do ... it seemed so natural a place for Sara and I yet Lee said that it was very special that Sara and I shared that aspect of our lives with them - it was a very special shared moment. Later all of them would say that it was Sara's way of telling them that "this" (our relationship - what she was showing them) was what was important to her and that it was not to be forgotten. That night after everyone had left Sara wa in bed and looked up at me in a bit of a panic and said, "Who's here?". "No one but you and I and Paxil" I replied. "Good," she said "That's as it should be." The peace that lived in that moment stayed with us through to the end and beyond. The next day was so very peacful that when our Hospice/Home Care nurse came by she said that it was so peaceful she did not want to leave. It was very beautiful, it was just what was appropriate, all I could do - "just this much". For the next few days that peace prevaded our life. Sunday night. Sara and I had spent a very quiet evening together. She was very much at peace. A few days ago while I was taking a nap on the floor by the couch Sara had asked her Mom, "Where's my husband. I want my husband". Not Brad - that could have meant Brad caretaker, Brad cook, Brad orderly, etc. No she wanted her husband. Well this night (Sunday) we spent lovingly holding hands "face to face as husband and wife". After she was truly asleep I checked in with her at 12:00 am to give her some meds through a sub-q butterfly which gave her a little discomfort so woke her. She looked at me, smiled, gave me a kiss and then went back to sleep. At 2:00 am I noticed that Sara was lying with her hands crossed over her bladder so I asked her, "Sara do you need to pee?". "How did you know?" she replied with a voice steeped in awe and wonder. I supressed a laugh and smiled at her and said, "I just know". It was very sweet the look of awe and trust on her face. "Okay" she replied and I lifted her onto the commode chair in the bedroom. She wasn't too happy about the commode chair but got used to it. I put a pillow behind her so she woud be comfortable. After some time she put her arms out to me. I thought she wanted me to help her back to bed but instead she put her arms on my shoulders and pushed me down to my knees to hold me. Now that took a lot of strength and then she just hugged and held me for a long while. Then as she let go I noticed that she had begun to look at the altar that resides in our bedroom. It has two figures on it: Quan-yin (Taoist bohdisattva/goddess of compassion) and Wonder Woman (Sara's image for the spiritual warrior - see story here). After looking at the altar for some time she got a very deep profound look of peace on her face and smiled. Then she looked at me and I asked if she wanted to be lifted back into bed. "Yes" she nodded. So I picked her up and lay her in bed. Her lips were a little dry so I gave her some water with a sponge and she smiled at me and said,"I love you". "I love you too", I replied and she gave me a kiss on the lips and drifted off to sleep. It was now 2:30 am so I sat up just watching her breathe for awhile. She was so peaceful and her breath so unhindered - it was beautiful to see so at ease. I watched her until 3:00 when it was time for her next injection. She stirred, woke as the maxoran made its way under and in, smiled at me and gave me another kiss. "I love you" she said again and smiled broadly as I repled in kind. Then I gave her some more water with the sponge and she drifted back to sleep. I lay beside Sara, held her hand and myself went back to sleep and we both slept soundly. At 6:00 I awoke for Sara's next injection and, as before, as the meds went under and in she stirred. I gave her some more water with the sponge. This time she didn't say anything, she simply pursed her lips for a kiss - how could I refuse. She kissed me and then again drifted back to sleep. As it was 6:00 in the morning I tried to sleep awhile longer but within minutes realizedthat I was awake for the day. I got up, went and boiled water for coffee and then came back and sat in the easy-chair we had put in the bed-room for Sara. I sat and watched her breathe. Her breath was deep, slow, soft, profound - like meditation. The longest most profound breaths I had seen her take in months. She looked so at peace. I sat with her, on and off flipping through a book until just before 7:30 when Paxil came running into the bedroonm. She jumped up on my lap and began kneading an purring turning in a circle three times clockwise when she suddenly stopped and dropped her head on my lap and looked over at Sara. I looked up to see Sara's last breath leave her body - a simple silent sigh . . . . She just stopped breathing - as simple as that. She was simply gone - void - peace - "as it should be". I then spent a few moments with Sara. I lit incence and chanted a prayer that she would find her way easily through the bardo (doorway) she had passed through. And I read aloud the following from the Tao Te Ching:
Then I called Sara's family (Lee, Pat and Jenny), Daphne (Sara's doctor), my Mom and Dad, and Megan and Craig. A little while after Lee, Pat, Jenny, Daphne and Megan showed up. Later that morning Jenny, Megan and I washed Sara's body and I annointed her with a scented lotion she had specifically designed for her. Then, per her wishes, we dressed her in her wedding dress and she lay "in state" at our home for the day. People came and went spending time saying good-bye, praying, singing or simply just being there. There is nothing more to say except that it was "as it should be". All that Sara could have wanted. And for myself - the same. I was able to create the sacred space that she (we) required and we were together in our love through the moment of death and now still together in that love that sustains me. There is a story of Kwan Yin (Taoist goddess of compassion) who took
her mortal husband by the hand and flew off with him through the air to
her home on Pu T'o Shan where they sat in a golden field, facing on another
for 1000 years. In temples through out China prayers are said before the
statues of Kuan Yin and Wei T'o facing each other and whenever two people
meet and declare undying love, the Chinese say they are "face-to-face
man and wife". I have always alikened my wife to Kwan Yin and now I
know why. |
July 21, 2000 This evening we held Sara's memorial at Aberthau (West Point Grey Community Centre - where Sara and I were married). "as it should be"was the 'title' I gave the evening and there were some wonderful moments. Friends came and sang songs that Sara liked or that reminded them of Sara. Sarah Sample, Sara's BCCA counsellor spoke of Sara's time at the Cancer Agency (from her perspective and care). Daphne spoke of Sara at Callanish. She spoke of the "visioning your death" meditation and also honoured me very much by acknowledging Sara's and my love and travail. Mikey (Michael Booth Palmer) sang the song he wrote for "Sara's Story" : This Time. Shel Piercy of PS Films (the producers and Shel the director of "Sara's Story") spoke and showed a video that they had made of Sara singing John Denver's "Poems and Prayers and Promises" - which due to John's own death was going to be impossible to use in the documentary but Shel still filmed and edited it "against the eventuality of this moment". I have included Shel's beautiful words here for you to read as you will. Of course Jenny, Pat and Lee all spoke, and finally myself. I simply shared what I have shared above, those last five days and the wholeness, love, completion and peace that came in the end. Acknowledging the work that Sara did to achieve that place of peace and "no unfinished business". I talked about the place that is easy to go to when taking care of someone you love - caretaker and patient. I gave a warning to be careful of that place where people become roles. I acknowledged that Sara and I had gone to that place but also returned to a very complete and loving place wherein our life together became whole and in that there was no betrayal in her death. All was finished and whole. Yes it would have been "better", "nice" (choose a word) if she could have lived, but the reality was that she was not going to - and from that reality we grew beyond death and lived together fully until her final breath. Sara lived unto her death. Her dying was her last living action - I am honoured that I was with her and that we loved each other so completely. Then we adjourned to the Goodson's (family friends - Laura's parents) for a wake. As the night went on the sky flashed with lightning and thunder . Many thought and commented up how they felt it was Sara giving her applause and telling all she was still "there". And then the rains came and cleansed our world with the tears shared that night. |
July 24, 2000 Today I left Vancouver to go back up to Wells. As I drove I kept being overcome with thoughts that came out full born into my consciousness. So much so that I had to write them down in my KM log. Starting on my way out just past the Port Mann Bridge. It has become a bit of a travellogue of my mourning and the grieving this journey for the first time alone (since I met Sara). I will share them below: Sunrise to the east BRIDAL FALLS Even in the lee of the mountain EMORY CREEK I pause at the roadside - SPUZZUM ROADSIDE CAIRN Spuzzum Roadside cairn 90 MILE roadside black bear - dead QUESNEL Quesnel stop stop stop 10 MILE HILL (BARKERVILLE HIGHWAY) Each hill my heart drops music until then Last through with Sara Wingdam blown tire Devil's Canyon, Wells JACK OF CLUBS LAKE "single lane traffic" |
July 26, 2000 I awoke this morning and felt very empty and alone. As I looked at pictures of Sara I felt more alone today than yesterday. I miss her company, her warmth, her body, smie, and love. Awakening so empty I was not sure how to approach the day then I remembered a poem by Rumi the Sufi mystic: Today, like every other day, we wake up empty and frightened. Don't open the door to the study and begin reading. Take down the dulcimer. Let the beauty we love be what we do. There are hundreds of ways to kneel and kiss the ground. So with that in heart I went to Barkerville to prepare for going back to work . . . |
August 05, 2000 I feel I am wounded All the preperation in the world could not take this away - nor would or should it be so. Remeberance, integration, love to last forever. The pain and loss will diminish Yet still, on quiet mornings like this I miss my wife |
August 06, 2000 (written on the way to work, between Wells and Barkerville) cloud vista over sunlit mountains |
August 07, 2000 Tonight was the night of Sara's Barkerville Memorial - held at the Theatre Royal. It was similar to the memorial in Vancouver. Jenny, Pat and Lee all spoke as did many friends. Though when Jenny spoke it was funny because it became a bit of a "roast of Bradley" becuase she described, from her point of view, the summer that Sara and I first met. It was quite funny. Danette Boucher, my dear friend and co-manager here in Barkerville spoke of the last time she spent with Sara - her prepared words were so beautiful that I have included them here (Danette). Then Danette also went on to describe the summer that Sara and I met. She talked abourt being present the moment "Brad met his future wife" and how I spent the summer running away from her. The trip we took to Price George wherein I "complained" about this girl that liked me "What do I do ...?", and Danette said (so very rightly), "Well, for someone you don't think you like - you sure spend alot of time talking with her and about her!". And then Sara got the Chicken Pox and I spent time with her .... It was a wonderful acknowledgement of Sara and I. She even went so far as to say how few find true love, but that Sara and I were that. Mikey then read Shel's words and showed the video of Sara singing "Poems, Prayers and Promises". And when I spoke I didn't re-tell those last days. Rather I felt the need to give all these people who loved and saw Sara in Barkerville, while she was mostly healthy or not in treatment, a context for the remenicences and stories of us here. I realized as I looked out at that community that they needed some avenue to integrate the pain and to know that we were/are alright. So I talked of our time here. Not detailed medically, but yes, of the surgeries and other illnesses, the hard battles fought and won - no not won - taken in, taken inside and moved forward with. That Sara always took things inside and moved ahead with the pain, the learning, the knowledge. And that she did the same with people and love - she took them in and carried them with her. Looking ni to the audience I told them that I could see Sara in each and every on eof them, and that I take that in. I then simply told them that Sara' death was "as it should be". That her last words were "I love you", and that her last action was a kiss. That being here now lets me see her "living still" and that, simply, "I miss my wife". That was the summation of it all. |
August 25, 2000 Received a postcard from my cousin Laura today. It had a quote on it I would like to share: Farewell and death are only two different descriptions for a new beginning and a new life. All that you are leaving behind You will find again - in different shape and form. The thought was very timely and though I do believe this to be true, it is still difficult to find in the midst of grief. |
September 13, 2000 Returned to Vancouver today. I walked into our flat and fell to my knees in tears. It feels so empty. I miss Sara so much. |
September 25, 2000 I have been hired to do a show in Salmon Arm (my home town). So I am going to go. to be around my parents and family. My sister will be married on Thanksgiving Weekend (Saturday Oct 7th) the date of my parent's 39th Anniversary, the same weekend Sara and I were married two years ago (Sat. October 10). It will be good to be home. And on the 14th I will go up to the ranch and we will spread Sara's ashes and have an ashes ceremony. |
October 10, 2000 Today is my anniversary - lone for the first time in 9 years. Nine Oct. 10 's / Thanksgiving weekends ago we "officially became boyfriend/girlfriend). Two years ... note quite three months but always on the Way I then, later wrote the following at the theatre:
OCTOBER 10 - 2000 I am sitting alone on stage at the theatre (Shuswap Theatre) 1/2 way thrugh my lines in "Yesteryear" and I am overcome with thoughts of Sar - actually with feelings of missing Sara. It is the second anniversary of our marriage and though it's "only" another day it is also a milestone, a marker. Where am I now? How far along is my grieving? Have I honoured her? Have I honoured myself? (Yes to the last two questions by the way ...). But I am still pained in my heart, in my soul. I miss her dearly. My support. the one who could (when she wanted to) make me laugh. Who, when she held my hand, quickened my pulse and yet stilled my soul with her love. She loved me. I had a long talk Sat. (at the wedding) with Dep Mattu about letting go so the dead can go on (Hindi). But I did let her go - even before she died I gave her permission and told her that I wasn't holding her back. When she died - void. yet she had returned a few times to comfort me. That I think is the bodhisattva in her - and I do love that she checks in, especially in the form she does, for I know that she is more. My tears are for me. Sara, this day, our anniversary, I honour you - my love. This weekend I bury your ashes and errect a monument to you. It will
stand and ultimtely fall as time passes, but I know you have returned to
the root - the Tao and I know I will join you there and we'll again become
one. I love you - still |
October 14, 2000 Today we held an ashes ceremony at the ranch and spread Sara's ashes. My Mom and Dad came. Jenny and Joerg flew up, Mikey Pat and Lee were there, and we were joined by all Sara's friends from the Precipice and those that could not come to Vancouver or Barkerville. Lee and Mikey and I set up the bench and stone the day before. At the ceremony we all walked up the Hill to Jim Glen playing bagpipes. I led the way up carrying Sara's ashes. At the top I lit three joss sticks and placed them in the ground before the stone. Mikey sang "This Time" (the song from the documentary). Lee read a story he and I had written about the people of a Valley who came together to remember the life of the youngest of four warriors who had lost her life to a thief (the 4 being Sara and Jenny, & Mandy and Raine Glen). It was then Raine, Sara's friend growing up - who placed the sword in the stone. Then I spoke - read from my journal of October 10 (see above) - and proceeded to spread Sara's ashes - the joss sticks burned out just as I finished?!! Everyone had brought a bouquet of wildflowers made by Rosemary and they were either placed at the foot of the stone or thrown over the side of the hill to jon the ashes (the children present placed their's first). Then we all walked down had a bonfire and a party in love, support of each other and remeberance. follow this link to see the pictures and poems of the |
December 21, 2000 FIRST DAY OF WINTER shortest day, longest night deepest darkest winter now begins the growth to light I deeply miss my love - Brad |
December 29, 2000 the following I wrote/adapted after reading a lovestory of a warrior/monk" While I am alone I will remain myself as myself I will always love her. Ourselves are one self. So I have her within me, and we will be together always in this life, and sit side by side on the same lotus in the next. OM MANE PADME HUM.
It seems appropriate at the end of this year ... love Brad. |
Jan 11, 2001 I have begun to enter the winter of my grief. I miss Sara more now than I have ... but since the 1st I have booked a ticket to Thailand - a journey to explore inner and outer. My friend and counsellor at the BC Cancer Agency suggests that I am in am finally in despair and that that's natural. |
Jan 20, 2001 I miss Sara, our interaction - her love of me and mine of her. She did have questions and fear at times - yes. But on the whole there was a peace and strength that we shared together, firstly when we were alone, but towards the end of her life it was always present - even when we were apart. So I sit with my fears about the future, I breathe and try to grasp my despair. But grasping is perhaps the source of pain in both cases. The Buddha says all existence is suffering (dukka) and the dukka is caused by desire. Eliminate desire - grasping - and dukka will cease to arise. So I try to be aware of the causes of suffering and release them. And tell my story. "Whoever survives a test, whatever it may be, must tell the story. That is his debt" - Elie Wiesel. Surviving the loss of a loved one is it's own kind of test. To tell our story is a way of affirming the life of teh one we have lost.... Also a gift to others - sharing but also how we got through, what were our fars? panics? what helped?. In telling my story I share what is most precious to me. Regardless of all I love and miss you Sara. I love, miss and honour you. I will take you on this journey with me, in my heart. Never a burden, but a light to remind me to explore and cast my own light on those dark places where awareness is hidden from. |
Jan 24, 2001 - Lunar New Year do coins really speak? regardless my soul sings; open for the journey a new year poem Sara, your love goes with me now and forever missing you more now the depth of your love reminds how much I love you
my one true soul love I will be with you again at home in Tao |
Feb 4, 2001 (pictures, thoughts, observations of grief, love, and returning)
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April 12, 2001 "Sara's Story" ran today on WTN . . . I miss her . . . I miss her alot. Even now I am in tears. This past week I have been noticing the recurrance of missing and pain . . . memories of where we were this time last year - how she was physically, emotionally - our last visit to Salmon Arm, etc. etc. etc.
Simply - I miss her and love her so much. |
April 30, 2001 My high school teacher/mentor showed "Sara's Story" to his Grade 11 & 12 English classes today. He asked if I would be willing to talk to the classes - I said yes. When he told them the fis thing they sid was "Are you sure? Do you think he is emotionally ready for this?" Wow, that level of concern was very . . . wonderful for lack of a better word. They also were given assignments to critique the video, or summarize (depending on which grade they wanted to achieve). Many said, "but how can you ask us to critique something so personal and sensitive?". Peter's reaction was the same as mine - it's okay to critique the video production - you don't critique Sara's life or the events - just the editing, the video presentation itself". Also, critique does not have to be negative. |
May 02, 2001 I went and talked to the classes today. I told them about the filming, what happened after the documentary ended, Callanish, and the last ten days we had together. The questions most asked were, "Did she find peace?" and "Do you still get along with her family?" Yes to both I said. One young woman said how hard it was to do the assignment, that it was very emotional and sad for her. She said that she just kept crying - I said that "that's okay - that's good". And afterwards many of the class said it would now be easier to finish the assignments. Many thanked me for sharing our life with them. Another teacher approached me just as we were finishing. Her class had just finished watching the documentary and wanted to talk with me for a bit . They were all moved and some still in tears. They thanked me for sharing also, and the teacher told me that she had found out things from her students in the 20 minutes after the documentary was over that she had never known before. Sara would have been so happy to see this reaction. This is what this documentary was aimed for - this age group and a little older, and it did effect and change them. |
May 16, 2001 snow recedes, grass grows though spring comes late with fresh snows humming bird still flies
- written at Wells, thinking of Sara looking at fresh snowfall |
June 07, 2001 Sara, I miss you I miss the perfection you were Not the trials and tribulations But the love, challenge and growth I miss you. |
June 12, 2001 I recieved an e-mail that another young man - Craig Brock - who had DSRCT has died. Another member of that community plauged by the thief. My heart breaks anew, tears pouring down my face. I light incense and read Chpt 16 of teh Tao Te Ching:Grief is born anew, but only out of love. REst easy Craig Brock, all is "as it should be". If some ask why I am sad . . . Tell them: I am the member of a sangha (a community), that is ever dying As we all are - but sometimes - more immediately A good reminder to live mindfully with compassion and lovingkindness. - love Brad
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June 14, 2001 My birthday. It has been emotional as this day has been coming. It rerminds me of my grief and loss. My first birthday without Sara. It is a milestone, a benchmark, even if I want it to be "just another day". It snowed this morning (early).
rain washing tears fresh snow reminding grief friends warming heart
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June 27, 2001
Today I miss you The world sends ugly reminders of your death and my lonliness. The state sings out your passing in a triumphant grab for dross. Every civic clamburing for more - sit in the trees, feel the sun and weep Breathe, centre and be I love you. -written after getting Sara's "Final Return for Taxes" reassessed and owing. We seem to have fallen between the cracks, not old enough for benefits, non-traditionally employed through illness, etc. etc. >sigh< well, 'tis done. |
July 11, 2001 Each on their own path Grief brings forth its own colours judge not the artist
scars still ache for you borne of pain, love and passion I wear them proudly
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July 17, 2001 Sara Rememberance Day Memories: "I love you" with a beautiful smile while drifting off. Crying in my arms. Playing tag, just the two of us under the stars and the northern lights at the ball diamond "Tie your shoes" . . . she calls as I run out the door to a fire call. Bitting the sponge to make me laugh a soft kiss on the cheek a kiss on the lips and "I love you" soft as a breath last kiss good-bye I miss you my love Always and forever Love Brad |
Sept 9, 2001 It has been a long summer. So many people had things to say about where I should be ... how I should be ... still grieving or not ... etc. It is hard not to take in what people say but I return to the fact that no matter what anyone says or thinks - Sara is with me - always Watching "Highlander", the familiar refrain "Who wants to live for ever" lost love - love taken too early don't deny your love "Will you love again?" - Yes. "Are you okay?" . . . "Are you okay?" - No ! ! !
"Years from now" - I agree - "grief flies away with time" ; but now - don't push me! |
Oct 30, 2001 - permission to grieve and yet live, now, today . . . I returned to our flat in Vancouver three weeks ago. Since then I have been in the process of making changes to our place . . . trying to make it a living space as opposed to a "museum". It's not that I conciously left everything "just the way it was" . . . but I had been leaving some things just where they were not because I wanted them that way but because unconciously, somewhere deep inside I was afraid that people might think I was trying to remove Sara from my life. I came across a quote in a book called "Healing After Loss": "Living on memories, clinging to relics and photographs is an illusion. Like food offered in one's dreams, it will not nourish; no growth or rebirth will come of it" - Anne Morrow Lindbergh. The quote was followed by a description of how some people preserve things "just the way they were". We want a few things that recall a loved one. Better if they are things that have a current use - a mother's favorite tea pot in which we now prepare tea . . .etc. And of course, pictures. But beware that pictures of our loved one aren't the only pictures we display - or that they are present in such numbers that they convey a message that the family's life is back in that lost era. . . . Shrines have their place, but they are poor backgrounds for life in the present moment.
It has been difficult working through the nuances of this with awareness, forgiveness and compassion for myself . Everytime I moved, put away or took something out it was weighted with such emotion and grief. Why move that? Why keep that? In the end I just started doing what "felt" right for me in that moment - as opposed to any sense of "propriety". And now the photos that are out are those that mean the most to me, and are there by concious choice not unconcious fear or judgement. Not that the fear and judgements weren't real or didn't have some basis and inception in the real world . . . but those fears must be forgiven, as must the source of the perceptions. In that we can free ourselves to grieve, mourn with freedom and compassion as it comes - whenever and however it comes. Tonight itself I spoke at a Friends of Callanish meeting. I was asked to speak about what Callinish meant to Sara and I personally. Not through theory or health but how it affected our lives. I talked about Sara's cancer history, the roles that we had fallen in to at times, the moment of "going through the fire" together after Sara came back from Callanish - still struggling to find voice for the experience she had had. I told of Sara's learning a language, finding a voice and communication that enabled her (and her and I as a couple) to have no unfinished business. That there was no betrayal in her death and that that was due to her finding that voice and vocabulary at Callanish. The most wonderful thing for me was how affected the audience was by my story. There was utter silence when I finished talking. Then after the event many came up to talk to me. They all said it was very obvious how much Sara and I loved each other. One young man kept saying how awed her was by the image of no betrayal and that I was like the proverbial pebble dropped in the pond with all the ripples spreading out . . . For myself I came home with a sense of centre and empowerment. That I can do all I need, change what I need but that Sara is always within me - that cannot be taken away even if the outward show, the accoutrements are removed. It is a process grief. It is ever changing. Some days I need to have a certain picture by my bedside ... others I do not. Some days I wear Sara's scarf around my neck, other days I wear the one Sara gave to me on my birthday. But regardless of the outward show, what pictures I have on my shelves, what shoes still live in my closet, she is still with me and that will never change regardless of the preceptions of the world, regardless of the outward show. |
Dec 7, 2001 (written while waiting to see John, my counsellor at BC Cancer Agency):
I just looked in to a room and saw a patient who looked an awful lot like Sara looked during treatment and tears flooded my eyes. I miss her. My heart breaks anew and pain washes into my doubt and fear . . . >sigh< . . . breathe. Do not armor the heart . . remain open and let it just be . . . |
Dec 8 , 2001 I have been reading "Elfquest" - books that Sara and I used to share. There is a term "recogntion" - "Soul meets soul when eyes meet eyes - thus is Recognition acknowledged and defined by all elves. It is described as 'an irresistible, involuntary mating urge that attracts interested spirits who make magic more potent . . . visions more clear.' The souls of the two are laid bare to one another . . ." It is romantic to believe that you cannot live without the one you love - the one you've 'recognized' . . . but the relity and the pain is you do . . . you live on, in pain and longing for that soul . . . but only until you return to the great Tao . . . Yet for some, that can be a lifetime . . . So honour that lifetime it takes work, but honour it in love in love and rememberance of your one true love recognition at moment of meeting you knew my soul name and I yours I love and miss you |
Dec 29, 2001 I went to see "The Lord of the Rings - The Fellowship of the Ring" with friends Carl and Silva tonight. What struck me the most - the emotion of the film.The idylls of the Shire - before the loss of innocence. It made me sad in wanting Sara to have seen it - but also somehow it reminded me of her - her own innocence and play. The love Gandalf showed the hobbits; the pain in Gandalf's eyes and face when Frodo chose at Rivendel and said so quietly "I'll do it" - just as Sara chose and did follow her own journey. The grief they all shared in Gandalf's loss to the Balrog, the grief at Boromir's passing. The continuous offerings of love and support mirrored by Frodo's open hand offering, closing, being gently closed by another, all of it. It all opened and touched that place deep in my heart. When the movie was over I couldn't speak. On the walk home when I tried to talk about what I felt from the movie and tried to explain I begn to get choked up Silva said to me "Stop for a moment", so I stopped walking and looked at her and I began to weep and cry. Silva and Carl held me for a minute and then we continued walking and talking about the movie. The film's emotional content touched something deep inside me and I am glad I had Carl and Silva there to share it with me and witness and keep me safe. It is not about getting through the grief - it is about integrating it, allowing it to be and giving it space, time and acknowledgement. Being aware and treating oneself with forgiveness and compassion . . . and remembering our love. Doing no more that "just this much".
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Jan 01, 2002 winter frost on grass informing cold thoughts of grief lonliness and loss winter frost sparkles caught by full winter moon's light my heart warms - I smile |
May 01, 2002 roadside before Flood Hope Creek/ Bridal Falls (as 2 years ago):
cool comfort from morning sun's driving heat shaded relief in the mountain's lee reinforms old grief memories of loss I miss and love you still and forever yours love Brad |
May 16, 2002 Went to see Star Wars Episode 2 - Attack of the Clones . . . I remember Sara wanting to live to see all three, or at least Episode 1, so I took her picture with me to see the movie . . . as I took her with me to Thailand . . . . |
May 21, 2002 I miss Sara - I want to see her - I want the happy ending!!! Though I know tha's not real - it is grasping/desire. THough I know we had all that many never get: a lifetime, a depth of transformation and love, an ending that was complete and full, with love, honesty, and no unfinished business, still I miss her and cry 'til it hurts. |
July 17, 2002 - 7:30 am - Sara's Rememberance Day I cry at remembered pain and loss At 7:30 this morning as I sat in rememberance and observance, I am informed by memory and my heart grows again love Brad On Sara's Rememberance Day - 2002 It is a time I allow for myself in quiet observation. Patsy asked me the other day "How long do we do this?" (i.e. observe the day). I said, "For as long as we need or want". For me - always. "Recovery is not a process that we can will, but consists of experiencing many small deaths, the passing of significant anniversaries until our identity is solid and natural in the pronoun "I"" - Mary Jane Moffat "Piece by piece, I re-enter the world. A new phrase. A new body, a new voice . . .. It is a slow recovery from a sickness, this recovery of one's self". - Tony Talbot. "I don't really remember the day that I first felt that all was not immediately lost. Was it a child's smile that awoke me, or a sign of sadness exposed in a place I didn't want it seen? or a sense of responsibility? Or had I finally given up on despair? Perhaps I was simply caught up again in the game of life." - Anne Philipe. |
September 13, 2000
There are times still, in the fall, when I am struck with a sudden and alarming melancholia.
Is it the seaonal reminder of when our awakening began - while as autumn mists descended, the veil was lifted in an instant from our eyes?
Is it the memory of ceremony and joy, no longer in the world but still in my heart?
Or is it simply that autumn is a time for the harvest, taking stock ...
and memory is turned up and over as are the feilds already gleaned?
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Harvest what has grown,
and honour that with the memory of what in previous seasons was turned under
to help prepare the feilds of your soul to continue to grow
as the breath of the seasons change.
It is simply the way of the universe.
October 12, 2002 - At the Ranch
It is good to retuen here, but this is not who you are. This stone, this sword, this bench are a wonderful memorial, but they are only you because they look out over the ranch, because birds sing and fly by (woosh woosh go the raven's wings as she fly's past my shoulder), because your tree, fallen, is still here.
Your presence is no stronger with me here than anywhere else for you are always with me.
As I walked I could still see some small white fragments ... given over from the urn, ashes turned to fragments not subsumed into the hillside, but now another part of it.
I know what they are. I reached down and held a few pieces. No more than fire bleached carbon.
"You are not present". I said to her, and felt a smile in my heart for yes, Sara was present, in my heart.
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ashes and bone
fragments not subsumed
reminders - nothing more
True spirit lives inside the heart and beyond
"gate gate paragate parasam gate"
(gone gone, gone beyond, gone to the other side)
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October 13, 2002
I am still struck by the little bits of ash and bone still visible, bleached on this hill.
Does anyone else see them - or notice them for what they are? Or is it my connection to them as they were spread by my hands two years ago? ... an observation, no a treatise for discussion ....
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soft breeze rustles leaves
alive with this sacred place
remembrance and peace
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fallen tree, sword, stone
leaves, scattered ash, moss, burned bone
what more could mark this place except breath, love, memories, smiles and tears:
No more than we all are: living.
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As I finish writing and get ready to leave I see a squirrel has set up house in the lightning struck tree - how appropriate:
a trail built by a father's grief
a stone laid by our own hands
a memorial is now a home
"Blessing" little squirrel for a warm winter.
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April 8, 2003
This spring I applied and today received notice that I have been accepted to do my Masters of Fine Arts (MFA) at York University. Years ago when Sara and I moved back to Vancouver, just before her diagnosis, we talked about me returning to do my MFA and study Voice with David Smukler - so I could teach. Well, all these years later it has happened. I am going to York to study Voice and do my MFA (Theatre). I have been accepted in the Acting program and the Voice Teacher program. I am very excited.
April 29, 2003 - Vancouver
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Night train whistle soft
stars peak through ambient city light
I leave tomorrow
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I am sitting on my patio freshly cleaned and prepared for tenants, and I am feeling reflective and emotional. I am not just going to Barkerville. I am going away for two years! Maybe forever?!!
I am excited, following my heart. At the same time I am feeling th eloss due to changes. I am experiencing loss of Sara and our life together as I clean and put things away, or get rid of things. THINGS! They are only things, but things have a habit of reinforming, re-minding memories ... and so many of my memories are tied up with loss.
No - no regret. Just the truth of loss. So I wanted to sit here on my patio one last time and reflect, ruminate, and breathe a little breath of my life as it changes and I step off on a new journey...
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white blooms await birth
fresh green shoots
grow, reach and climb
my garden - good-bye
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Sara planted you
you grew, you saw
her life pass
and now I leave you ... to yours
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Looking upI see
the fresh new branches
of the trees dancing in the breeze
How can anyone say,
"There is no life,
no breath, no Tao here"?
Tao is everywhere
Just stop and you will
see the world breathe.
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July 17, 2003 - Sara Remembrance Day
A flood of images:
- last "I love you" and her hug at the altar
- our first Christmas together on 13th Avenue in Vancouver
- kissing
-her playing with my hair and beard on the couch (while dying)
- going to the SW (E)
- showing me the Precipice
- "this is the begining, isn't it?"
- our wedding day: watching her walk down the aisle
- all moments: the thing common between all = HONESTY.
We shared honesty in everything (even if it took a few steps to get there) regardless there was honesty.
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3 years have wrought change
All our love still fills my life
A breath: still, fall, rise
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