(posted by Greg)
Particulars of Monica's Memorial Service are as follows:
Date: November 16, 2013
Place: Shiloh-Sixth Avenue United Church
1111 Sixth Avenue
New Westminster, B.C.
Time: 2:00 p.m.
(In lieu of flowers, donations can be made to the B.C.Cancer Foundation)
In a day or so, I will write try to express some final thoughts and feelings for this blog.
Wednesday, November 6, 2013
Monday, November 4, 2013
Monday, November 4, 2013
(posted by Greg)
So goodbye my friend
I know I’ll never see you again
But the love you gave me
through all the years
Will take away these tears
I’m okay now
Goodbye my friend
(refrain from a song written by Karla Bonhoff- for a link to
listen to the song as sung by Linda Rondstadt go to: http://www.youtube.com/watch?v=aBHcUv_42zI )
Monica passed away this morning at 12:21 a.m. These words
and this song pretty much sum up how I am feeling at this moment.
I will post details of Monica’s funeral service on this blog
once arrangements are made and I may gather my thoughts to do a last blog.
Sunday, October 27, 2013
Sunday, October 27, 2013
(posted by Greg)
In the last.week Monica's condition has taken another turn for the worse. Last Sunday, she had a seizure and as a result (or as a result of the medicine), she was asleep and difficult to arouse (pretty much like a coma). The Homecare nurses put some "ports" in her arms so that I can continue her steroids and so that I can give her medicine for pain or to relax her if she has another seizure. Because of the way that she was sleeping and the sound of her breathin, I was quite worried that she would pass very soon. So far Monica has not had any further seizures and does not seem to be in any pain so we have not had to administer any of these other medications.
On Monday evening Monica opened her eyes and seemed to be aware. On Tuesday and Wednesday she was quite awake although not really responsive. Thursday and yesterday she was asleep much of the day again. So, there is considerable variation day to day.
I have had quite a bit of help and support through this last week. Monica's mother and brother have been visiting throughout (Oma came in by bus and skytrain on Thursday to be with Monica and to help as much as she can) and on Monday they brought along her Aunt. Marley took time from school on Monday and has been at home as much as possible. Jesse's girlfriend spent Monday evening with us as well . The Homecare nurses have increased the frequency of the their visits (coming twice a day when we were most worried).and have been very helpful. The Homecare workers continue to come in twice a day and, although I have cut back my time in the office to next to nothing, I still have homecare workers from Nurse Next Door come in for the afternoons on weekdays to help me as required.
The big changes which, I think, don't bode well are Monica's breathing and her ability to swallow. She is having real difficulty swallowing. So, because of the risk of causing her to choke, we are limited in the types and quantities of foods and fluids which we can give her. As difficult as this is to think about or to say, I am acutely aware that her time with us is limited. (Mind you, she continues to surprise me with her strength and will to live.)
In the last.week Monica's condition has taken another turn for the worse. Last Sunday, she had a seizure and as a result (or as a result of the medicine), she was asleep and difficult to arouse (pretty much like a coma). The Homecare nurses put some "ports" in her arms so that I can continue her steroids and so that I can give her medicine for pain or to relax her if she has another seizure. Because of the way that she was sleeping and the sound of her breathin, I was quite worried that she would pass very soon. So far Monica has not had any further seizures and does not seem to be in any pain so we have not had to administer any of these other medications.
On Monday evening Monica opened her eyes and seemed to be aware. On Tuesday and Wednesday she was quite awake although not really responsive. Thursday and yesterday she was asleep much of the day again. So, there is considerable variation day to day.
I have had quite a bit of help and support through this last week. Monica's mother and brother have been visiting throughout (Oma came in by bus and skytrain on Thursday to be with Monica and to help as much as she can) and on Monday they brought along her Aunt. Marley took time from school on Monday and has been at home as much as possible. Jesse's girlfriend spent Monday evening with us as well . The Homecare nurses have increased the frequency of the their visits (coming twice a day when we were most worried).and have been very helpful. The Homecare workers continue to come in twice a day and, although I have cut back my time in the office to next to nothing, I still have homecare workers from Nurse Next Door come in for the afternoons on weekdays to help me as required.
The big changes which, I think, don't bode well are Monica's breathing and her ability to swallow. She is having real difficulty swallowing. So, because of the risk of causing her to choke, we are limited in the types and quantities of foods and fluids which we can give her. As difficult as this is to think about or to say, I am acutely aware that her time with us is limited. (Mind you, she continues to surprise me with her strength and will to live.)
Monday, October 14, 2013
Monday, October 14, 2013
(posted by Greg)
All things considered, our Thanksgiving was about as good as it could be: the weather was glorious - Oma took the bus and skytrain to our house from Langley - Jesse and his girlfriend, Sidney, joined us for dinner -and Ingo cooked the turkey and brought it to our house along with a mess of brussel sprouts. All I had to do was buy a pumpkin pie and prepare the potatoes and some vegetables. The dinner was great and the clean-up was fairly painless with everyone helping clean up..
I often say "grace" at family dinners. Even though I still have lots to be thankful for (and I know from our prior discussions that Monica shares those sentiments), I knew that I couldn't get through it without choking up. I think everyone felt the same. Finally, Oma said "grace" in German and, not understanding much German, I got through it without tearing up until I heard the German word for daughter (and started to imagine how she was feeling).
We have now had more than two years to prepare ourselves for what we are currently experiencing. I won't try to describe the ongoing deterioration in Monica's condition. Suffice it to say that it is very difficult for us all to see the ongoing changes in Monica. And, unfortunately, this is compounded because I can't converse with the person I most want to share my feelings with.
I noticed that this blog has now had more than 43,000 views. This is an amazing number and is indicative of the support which my family and I are receiving from many people in many different ways. I want to acknowledge that we do feel that support. We recently received a card from friends in South Dakota (friends who seem to have access to the most wonderful card shop). To help express my feelings regarding the support we feel, I would like to repeat the message in that card:
"The sky is filled with stars invisible by day" - Henry Wordsworth Longfellow
Friends, like the stars are always there,
even when
you don't see them....
encouraging you,
cheering you,
hoping with you.
All things considered, our Thanksgiving was about as good as it could be: the weather was glorious - Oma took the bus and skytrain to our house from Langley - Jesse and his girlfriend, Sidney, joined us for dinner -and Ingo cooked the turkey and brought it to our house along with a mess of brussel sprouts. All I had to do was buy a pumpkin pie and prepare the potatoes and some vegetables. The dinner was great and the clean-up was fairly painless with everyone helping clean up..
I often say "grace" at family dinners. Even though I still have lots to be thankful for (and I know from our prior discussions that Monica shares those sentiments), I knew that I couldn't get through it without choking up. I think everyone felt the same. Finally, Oma said "grace" in German and, not understanding much German, I got through it without tearing up until I heard the German word for daughter (and started to imagine how she was feeling).
We have now had more than two years to prepare ourselves for what we are currently experiencing. I won't try to describe the ongoing deterioration in Monica's condition. Suffice it to say that it is very difficult for us all to see the ongoing changes in Monica. And, unfortunately, this is compounded because I can't converse with the person I most want to share my feelings with.
I noticed that this blog has now had more than 43,000 views. This is an amazing number and is indicative of the support which my family and I are receiving from many people in many different ways. I want to acknowledge that we do feel that support. We recently received a card from friends in South Dakota (friends who seem to have access to the most wonderful card shop). To help express my feelings regarding the support we feel, I would like to repeat the message in that card:
"The sky is filled with stars invisible by day" - Henry Wordsworth Longfellow
Friends, like the stars are always there,
even when
you don't see them....
encouraging you,
cheering you,
hoping with you.
Sunday, October 6, 2013
Sunday, October 6, 2013
(posted by Greg)
Monica continues to keep up the struggle but is getting worse. Her right leg won't support any weight really any more and buckles easily during the transfers (making the transfers trickier). She is speaking very little (but surprised me yesterday when she said hello both to her Mom and Ingo) and that makes caring for her more difficult and a bit heartbreaking as well. So far however we are still able to cope with the assistance of the Homecare workers and the Nurse-Next-Door.The plan still is to keep Monica at home as long as possible.
Because Mollie did not have Kindergarten Thursday and Friday, Daniel was able to make a quick driviing trip home from Boise (driving through the night on Wednesday night) and was able to be here Thursday, Friday and Saturday. It was nice to have him home again (even if for a few days) and having Mollie here was once again like a breath of fresh air. (In one touching moment, we overheard Mollie telling Monica " Don't worry Grandma- I will always be there for you.")
So, on the weekend everyone (Ingo, Oma, Jesse, Sydney and a student girlfriend of Marley's) was around visiting, playing card games, laughing, teasing and eating a huge lasagna that Ingo had made. We had a nice, natural family time and kept Monica in the thick of it. She wasn't speaking but I think (at least, I like to think) was taking it all in and continuing to feel as a part of her life)..
Thursday, September 26, 2013
Thursday, September 26, 2013
(posted by Greg)
Monica saw the palliative care doctor on Monday. The Dr. was very nice and very gentle with Monica. We discussed how Monica was doing and she gave me some good advice as to how to experiment a little with Monica's medications to see which medications work the best and what times are the best to give them to her. Homecare will continue to monitor our situation in order to see when we need some more help.
Otherwise there is nothing specific to blog about. Monica, Marley and I are in familiar routine with the home support and coping with Monica's problems. However, while there is nothing specific to comment on, I do have a strong feeling that she is slipping at an accelerated rate.
Monica saw the palliative care doctor on Monday. The Dr. was very nice and very gentle with Monica. We discussed how Monica was doing and she gave me some good advice as to how to experiment a little with Monica's medications to see which medications work the best and what times are the best to give them to her. Homecare will continue to monitor our situation in order to see when we need some more help.
Otherwise there is nothing specific to blog about. Monica, Marley and I are in familiar routine with the home support and coping with Monica's problems. However, while there is nothing specific to comment on, I do have a strong feeling that she is slipping at an accelerated rate.
Wednesday, September 18, 2013
Wednesday, Sept 18, 2013
(posted by Greg)
As things get more difficult for Monica, I find it more difficult to describe how she is doing. So, briefly: She continues to get quieter (if that is possible) and generally weaker. As a result the transfers are getting trickier. She is also starting to shake on her good side and we have to help her more when she eats. Her feet are swelling (I think from the lack of movement) and are causing her some discomfort.
Fortunately, every so often something happens to remind us that she is still "in there". The other night she awoke saying "ow-ow-ow" over and over again (this is also what she says when she is frightened or wanting to say "no). We never did figure out what was causing her discomfort (I think it is muscle or joint ache from the spasticity) and it took a while to calm her down. In the course of talking to her, Marley asked her if she was dying. Monica responded with the most amazing combination of "no" and a deep belly laugh. She actually similarly laughed at a couple of different things.
I plan on asking to have the palliative care doctor from Homecare see her now so that we can get some advice on how to best deal with the swelling and her discomfort.
As things get more difficult for Monica, I find it more difficult to describe how she is doing. So, briefly: She continues to get quieter (if that is possible) and generally weaker. As a result the transfers are getting trickier. She is also starting to shake on her good side and we have to help her more when she eats. Her feet are swelling (I think from the lack of movement) and are causing her some discomfort.
Fortunately, every so often something happens to remind us that she is still "in there". The other night she awoke saying "ow-ow-ow" over and over again (this is also what she says when she is frightened or wanting to say "no). We never did figure out what was causing her discomfort (I think it is muscle or joint ache from the spasticity) and it took a while to calm her down. In the course of talking to her, Marley asked her if she was dying. Monica responded with the most amazing combination of "no" and a deep belly laugh. She actually similarly laughed at a couple of different things.
I plan on asking to have the palliative care doctor from Homecare see her now so that we can get some advice on how to best deal with the swelling and her discomfort.
Tuesday, September 10, 2013
Tuesday, September 10,2013
(posted by Greg)
Nothing too dramatic to blog about ... The Homecare Workers and the Nurse Next Door people are a big help. They are all quite good and a few are exceptional. I am happy that they are around during the day as transferring Monica is becoming a bit trickier as she gets weaker in her right leg. I am also thankful that Marley is around in the evenings as well.
Monica still has no pain, no headaches or seizures and, for the most part, seems content and at peace. As I said in an earlier blog, she is very quiet and says very little. I find this aspect hard.
One of the Nurse Next Door People read some stories to Monica of her own accord. Monica seemed to like it so Marley and I are reading more to her. The three of us are crying our way through "Chicken Soup for he Woman's Soul".
Nothing too dramatic to blog about ... The Homecare Workers and the Nurse Next Door people are a big help. They are all quite good and a few are exceptional. I am happy that they are around during the day as transferring Monica is becoming a bit trickier as she gets weaker in her right leg. I am also thankful that Marley is around in the evenings as well.
Monica still has no pain, no headaches or seizures and, for the most part, seems content and at peace. As I said in an earlier blog, she is very quiet and says very little. I find this aspect hard.
One of the Nurse Next Door People read some stories to Monica of her own accord. Monica seemed to like it so Marley and I are reading more to her. The three of us are crying our way through "Chicken Soup for he Woman's Soul".
Tuesday, September 3, 2013
Tuesday, September 3, 2013
(posted by Greg)
The last week went better than I expected. Monica and I have got into a routine with the Homecare Nurses. I am able to do the necessary transferring and they help Monica by cleaning her well and getting her dressed etc. While some are better than others, the quality of the Homecare workers is pretty good and I don't really have any complaints.
The first week using Nurse Next Door also went well. Again, the quality of the people is good. I used them primarily to help me Monica a bit in the afternoon and to be with her while I ran some errands, did shopping and kept a couple of appointments at the office. For the most part, Monica has been napping while I am gone. As part of the contract, they provide some other basic services. So, while they are here they do some laundry, dusting, vacuuming etc and will, if I organize it, help prepare meals by chopping vegetables etc. It is nice to come back to a clean house and to have the laundry done.
Our long weekend was fairly quiet. Ingo brought Oma and a steak dinner in on Friday night. He also brought Oma in for a visit yesterday. Marley was home most of the weekend which allowed me to get out to do a few chores. We took Monica to the mall on Sunday and had her hair trimmed. (We got an increasingiy rare smile when we bought her one of her favourite bubble teas.).
Thankfully, Monica is still in no pain and having no headaches etc. She is a bit weaker and is quite quiet (this is one of the hardest parts for us as we would like to speak with her more).
The last week went better than I expected. Monica and I have got into a routine with the Homecare Nurses. I am able to do the necessary transferring and they help Monica by cleaning her well and getting her dressed etc. While some are better than others, the quality of the Homecare workers is pretty good and I don't really have any complaints.
The first week using Nurse Next Door also went well. Again, the quality of the people is good. I used them primarily to help me Monica a bit in the afternoon and to be with her while I ran some errands, did shopping and kept a couple of appointments at the office. For the most part, Monica has been napping while I am gone. As part of the contract, they provide some other basic services. So, while they are here they do some laundry, dusting, vacuuming etc and will, if I organize it, help prepare meals by chopping vegetables etc. It is nice to come back to a clean house and to have the laundry done.
Our long weekend was fairly quiet. Ingo brought Oma and a steak dinner in on Friday night. He also brought Oma in for a visit yesterday. Marley was home most of the weekend which allowed me to get out to do a few chores. We took Monica to the mall on Sunday and had her hair trimmed. (We got an increasingiy rare smile when we bought her one of her favourite bubble teas.).
Thankfully, Monica is still in no pain and having no headaches etc. She is a bit weaker and is quite quiet (this is one of the hardest parts for us as we would like to speak with her more).
Monday, August 26, 2013
Monday, August 26, 2013
(posted by Greg)
Our home is pretty quiet today. Jesse left for Inuvik on Saturday. Daniel and Mollie left for Boise yesterday morning. (Both boys found it very difficult saying goodbye to Monica). This morning Marley started her 2nd year in med school. So, as I am writing this blog, it is just Monica and I in the house and it is pretty quiet.
The Homecare service now comes twice a day. Once around 9:30 when they give her a sponge bath and get her ready for the day. Only one worker comes so WCB rules limit how much they can move Monica alone and they are not allowed to do it with me. So, I do the transferring for them and they help with the wheelchair etc. They come back between 8 and 9 in the evening to do the same and get her ready for bed.
Marley and I are planning that we will give Monica a proper bath in the evenings when Marley is home.
I have arranged for a service, Nurses Next Door, to come for 4 hours in the afternoon Monday to Friday. They will help me as required (but have the same WCB restrictions re lifitng) during the day. Monica has a nap most afternoons. So, I will have them watch her or keep her company while I do my shopping and errands. It will also allow me to attend at the office a small amount for some meetings and signing cheques etc.
Our home is pretty quiet today. Jesse left for Inuvik on Saturday. Daniel and Mollie left for Boise yesterday morning. (Both boys found it very difficult saying goodbye to Monica). This morning Marley started her 2nd year in med school. So, as I am writing this blog, it is just Monica and I in the house and it is pretty quiet.
The Homecare service now comes twice a day. Once around 9:30 when they give her a sponge bath and get her ready for the day. Only one worker comes so WCB rules limit how much they can move Monica alone and they are not allowed to do it with me. So, I do the transferring for them and they help with the wheelchair etc. They come back between 8 and 9 in the evening to do the same and get her ready for bed.
Marley and I are planning that we will give Monica a proper bath in the evenings when Marley is home.
I have arranged for a service, Nurses Next Door, to come for 4 hours in the afternoon Monday to Friday. They will help me as required (but have the same WCB restrictions re lifitng) during the day. Monica has a nap most afternoons. So, I will have them watch her or keep her company while I do my shopping and errands. It will also allow me to attend at the office a small amount for some meetings and signing cheques etc.
Sunday, August 18, 2013
Sunday, August 18, 2013
(posted by Greg)
For the past two weeks Monica's condition has remained pretty much the same (and, in some ways, thanks to the steroids, better). The extended visit by the kids has been been good for all of us. I think Monica is enjoying the activity (and affection) that surrounds her.
Last week we kept the long-arranged appointment at G.F. Strong for the botox treatment. I wasn't sure what they could do or would be willing to do for Monica given her situation. However, I am very glad that we kept the appointment. They (it is a team of a dr, occupational therapist and physiotherapist) were very empathetic with Monica and gave her a series of injections to make it easier and less painful for us to both transfer and clean her. They also had some useful suggestions for us as caregivers regarding how to use the muscle relaxants and how to transfer her.After only a few days, we are noticing some beneficial effects. They also made it clear that we could come back for a further injection if necessary.
On Wednesday, Daniel's daughter, Mollie, joined Daniel (she had been with her mother in Alaska for the summer). Daniel and Mollie arrived home that night just as we were putting Monica to bed. The smile on Monica's face when she saw Mollie is something that I will remember for a long time.
Mollie has brought a different dynamic and energy level to the house. Monica is clearly enjoying watching Mollie and interacting with her. Mollie is very gentle with Monica and wants to help with everything. So, Grandma's daily spa team now has a 5 year old helping with her bath and the shampooing of her hair (not to mention operating the bath lift).
I am becoming more and more aware that I will soon need to make alternate arrangements to help me with Monica 's care. Jesse has to go to Inuvik for a month starting August 26th, Daniel needs to take Mollie back to Boise for kindergarten and Marley will be starting classes again on August 26th. At this point, the Homecare Service is going to provide help in the mornings and evenings with dressing and sponge-baths etc. Marley and I will probably give Monica a full bath in the evenings every other day. I haven't yet made a final decision but I think that I will hire someone else to help me with Monica for a part of each day (So that I can shop, exercise, pop in to the office etc.)
For the past two weeks Monica's condition has remained pretty much the same (and, in some ways, thanks to the steroids, better). The extended visit by the kids has been been good for all of us. I think Monica is enjoying the activity (and affection) that surrounds her.
Last week we kept the long-arranged appointment at G.F. Strong for the botox treatment. I wasn't sure what they could do or would be willing to do for Monica given her situation. However, I am very glad that we kept the appointment. They (it is a team of a dr, occupational therapist and physiotherapist) were very empathetic with Monica and gave her a series of injections to make it easier and less painful for us to both transfer and clean her. They also had some useful suggestions for us as caregivers regarding how to use the muscle relaxants and how to transfer her.After only a few days, we are noticing some beneficial effects. They also made it clear that we could come back for a further injection if necessary.
On Wednesday, Daniel's daughter, Mollie, joined Daniel (she had been with her mother in Alaska for the summer). Daniel and Mollie arrived home that night just as we were putting Monica to bed. The smile on Monica's face when she saw Mollie is something that I will remember for a long time.
Mollie has brought a different dynamic and energy level to the house. Monica is clearly enjoying watching Mollie and interacting with her. Mollie is very gentle with Monica and wants to help with everything. So, Grandma's daily spa team now has a 5 year old helping with her bath and the shampooing of her hair (not to mention operating the bath lift).
I am becoming more and more aware that I will soon need to make alternate arrangements to help me with Monica 's care. Jesse has to go to Inuvik for a month starting August 26th, Daniel needs to take Mollie back to Boise for kindergarten and Marley will be starting classes again on August 26th. At this point, the Homecare Service is going to provide help in the mornings and evenings with dressing and sponge-baths etc. Marley and I will probably give Monica a full bath in the evenings every other day. I haven't yet made a final decision but I think that I will hire someone else to help me with Monica for a part of each day (So that I can shop, exercise, pop in to the office etc.)
Wednesday, August 7, 2013
Wednesday, August 7, 2013
(posted by Greg)
Daniel has been home for two weeks now and Jesse for about 10 days. Monica and I are both enjoying having all 3 kids around home. I particularly appreciate the extra help with transferring Monica etc and with 4 of us at home we are able to each have some private time ( in my case I am working a bit). I think at some level the kids are each enjoying being at home with each other too (It has been a while since they all lived under one roof.). Overall, the interaction between all of us is very natural. Monica can't verbalize the thought but I am convinced that she is appreciating this time together. If there is a good side to Monica's situation, it is the opportunity that we each have to "show" Monica how much she is loved and appreciated. I think that we will all have good memories of this time together with Monica.
With the extra hands and the equipment which we now have in place, we are able to provide good care for Monica. So far we are able to do this without outside help. The Homecare service is monitoring our situation. Our contact visits each week and is helping us to plan for what the future will bring (in terms of care requirements). There is a palliative care doctor associated with Homecare. We have not yet met her but through the Homecare Nurse, she has now prescribed steroids for Monica. The steroids (which Monica was also given at the time of the original diagnosis and following the operation) reduce the inflammation caused by the tumour. Although the effects may be short terms, the steroids have the effect of "brightening" Monica and one of the side effects is a better appetite. So, Monica has been more verbal in the last few days (we all really like this) and has been eating well.
Monica continues to periodically surprise us with a good belly laugh at something funny or a timely comment.
Throughout ,one of the side effects of Monica's tumour has been that she has not been as emotional as you might otherwise expect. This has probably been beneficial as it has allowed Monica to remain calm. Today we got a bit of an emotional surprise however. The Homecare contact had been discussing some palliative issues with us and as a result we were discussing options for help for me when the kids cannot be here any longer (in about 3 weeks). Monica started crying but couldn't really express her thoughts to us. Her reaction caught us by surprise and within minutes we all had a good cry together.
Daniel has been home for two weeks now and Jesse for about 10 days. Monica and I are both enjoying having all 3 kids around home. I particularly appreciate the extra help with transferring Monica etc and with 4 of us at home we are able to each have some private time ( in my case I am working a bit). I think at some level the kids are each enjoying being at home with each other too (It has been a while since they all lived under one roof.). Overall, the interaction between all of us is very natural. Monica can't verbalize the thought but I am convinced that she is appreciating this time together. If there is a good side to Monica's situation, it is the opportunity that we each have to "show" Monica how much she is loved and appreciated. I think that we will all have good memories of this time together with Monica.
With the extra hands and the equipment which we now have in place, we are able to provide good care for Monica. So far we are able to do this without outside help. The Homecare service is monitoring our situation. Our contact visits each week and is helping us to plan for what the future will bring (in terms of care requirements). There is a palliative care doctor associated with Homecare. We have not yet met her but through the Homecare Nurse, she has now prescribed steroids for Monica. The steroids (which Monica was also given at the time of the original diagnosis and following the operation) reduce the inflammation caused by the tumour. Although the effects may be short terms, the steroids have the effect of "brightening" Monica and one of the side effects is a better appetite. So, Monica has been more verbal in the last few days (we all really like this) and has been eating well.
Monica continues to periodically surprise us with a good belly laugh at something funny or a timely comment.
Throughout ,one of the side effects of Monica's tumour has been that she has not been as emotional as you might otherwise expect. This has probably been beneficial as it has allowed Monica to remain calm. Today we got a bit of an emotional surprise however. The Homecare contact had been discussing some palliative issues with us and as a result we were discussing options for help for me when the kids cannot be here any longer (in about 3 weeks). Monica started crying but couldn't really express her thoughts to us. Her reaction caught us by surprise and within minutes we all had a good cry together.
Saturday, July 27, 2013
Saturday, July 27, 2013
(posted by Greg)
Although we do not see dramatic changes daily, cumulatively the little changes are adding up to significant changes. Monica is weaker still. So, transferring her (i.e. from bed to wheelchair to toilet etc). is quite a bit more difficult now as she has very little leg strength. We need to be quite a bit more careful when doing this and we need to help her quite a bit more.
As you can imagine, this change makes many of the routine daily tasks (going to the washroom, showering, getting in and out of the car) more difficult. We are having to adapt our routine to accommodate these changes. For example, we have stopped using the shower. Instead, we give Monica sponge baths and, for the first time yesterday, used a lift (which a friend of Oma's has lent us) to lower her into the tub. It also means that we don't travel unless there are two of us to help Monica with the transferring. We find that at each stage we are learning little "tricks" to help us cope. I have noticed that, if I move her bad leg for her while she is being supported, her weight shifts and she then finds it easier to mover for her other leg.
Monica is talking less as well and is now quiet most of the time. I think that she finds it very difficult to verbalize her thoughts. We mostly use a lot of questions which can be answered by "yes" or "no" to communicate with her. Sometimes she answers those questions verbally and other times she nods or shakes her head. There are occasions when she tries to talk more (usually when someone comes to visit). She can also verbalize more if she is trying to tell us that she doesn't like what we are doing or that she is nervous about how we are transferring her etc.
It is still pretty clear that she is aware of what is going on around her. She still laughs if one of us stubs our toe or bumps our head and she often laughs when someone makes a joke or when something funny happens in a T.V. show. However, her short term memory is pretty bad. She is also sleeping more and from time to time seems to be in daze.The mornings are the best times for her. She seems to be brighter and more herself after she has had a good night's rest.
A lot of the caregiving involves mundane tasks- keeping Monica clean, comfortable and well-fed. Many of these activities are not in themselves satisfying. But overall, doing these things for her give us an opportunity to express our love for her and, I think, help us cope with what is happening. I also think that Monica feels comfortable, safe and secure being in her home and having the normal daily activities and interactions happening around her. Also, every now and then among the mundane moments, some special, tender moments occur which make our efforts worthwhile and which confirm to me my assessment of how she is feeling.
Daniel came home last Sunday and will be able to be here for several weeks. It is great to have him at home. Marley and I really appreciate the extra muscles. I am happy that he is having an opportunity to help us and to share some of those tender moments with his mom too. I think that having this time with Monica will help him cope.
Jesse is soon finished his clerkship in Duncan and we are expecting him to be back in Vancouver and around home after August 1st. He starts his fourth year in medical school with a 4 week rotation in family medicine in Inuvik starting on near the end of August but he should be able to be with us for about 3 weeks too.
Although we do not see dramatic changes daily, cumulatively the little changes are adding up to significant changes. Monica is weaker still. So, transferring her (i.e. from bed to wheelchair to toilet etc). is quite a bit more difficult now as she has very little leg strength. We need to be quite a bit more careful when doing this and we need to help her quite a bit more.
As you can imagine, this change makes many of the routine daily tasks (going to the washroom, showering, getting in and out of the car) more difficult. We are having to adapt our routine to accommodate these changes. For example, we have stopped using the shower. Instead, we give Monica sponge baths and, for the first time yesterday, used a lift (which a friend of Oma's has lent us) to lower her into the tub. It also means that we don't travel unless there are two of us to help Monica with the transferring. We find that at each stage we are learning little "tricks" to help us cope. I have noticed that, if I move her bad leg for her while she is being supported, her weight shifts and she then finds it easier to mover for her other leg.
Monica is talking less as well and is now quiet most of the time. I think that she finds it very difficult to verbalize her thoughts. We mostly use a lot of questions which can be answered by "yes" or "no" to communicate with her. Sometimes she answers those questions verbally and other times she nods or shakes her head. There are occasions when she tries to talk more (usually when someone comes to visit). She can also verbalize more if she is trying to tell us that she doesn't like what we are doing or that she is nervous about how we are transferring her etc.
It is still pretty clear that she is aware of what is going on around her. She still laughs if one of us stubs our toe or bumps our head and she often laughs when someone makes a joke or when something funny happens in a T.V. show. However, her short term memory is pretty bad. She is also sleeping more and from time to time seems to be in daze.The mornings are the best times for her. She seems to be brighter and more herself after she has had a good night's rest.
A lot of the caregiving involves mundane tasks- keeping Monica clean, comfortable and well-fed. Many of these activities are not in themselves satisfying. But overall, doing these things for her give us an opportunity to express our love for her and, I think, help us cope with what is happening. I also think that Monica feels comfortable, safe and secure being in her home and having the normal daily activities and interactions happening around her. Also, every now and then among the mundane moments, some special, tender moments occur which make our efforts worthwhile and which confirm to me my assessment of how she is feeling.
Daniel came home last Sunday and will be able to be here for several weeks. It is great to have him at home. Marley and I really appreciate the extra muscles. I am happy that he is having an opportunity to help us and to share some of those tender moments with his mom too. I think that having this time with Monica will help him cope.
Jesse is soon finished his clerkship in Duncan and we are expecting him to be back in Vancouver and around home after August 1st. He starts his fourth year in medical school with a 4 week rotation in family medicine in Inuvik starting on near the end of August but he should be able to be with us for about 3 weeks too.
Sunday, July 14, 2013
Sunday, July 14, 2013
(posted by Greg)
Monica's leg strength continues to get weaker.Sometimes it is worse than others. But, so far we are coping reasonably well. We use the wheelchair in the house pretty much all the time but Monica is able to take the few steps which we need her to take in order to be able to transfer her from bed to wheelchair to shower to chair (and so forth).
For the most part Monica stays on the main floor of our house (avoiding the stairs) but we have figured out how to get her to the car so that we can still take her out.We still try to break up Monica's day with walks, picnics etc. and during the last week had a couple of nice walk.
We have a hospital bed set up in the dining room. Marley and I take turns sleeping nearby so that we can take her to the washroom as required during the night. Having Marley staying at home has been invaluable. When required there are two sets of hands and we are able to give each other breaks from the caregiving and still make sure that Monica is not left alone anymore.
Monica continues to get quieter (I think this is because she has trouble finding the words to express herself). She does however follow the conversations going on around her (or t.v.) and laughs at those jokes she likes (she still laughs if I bump my head). There have been some other changes. She is sleeping a bit more during the day and has had a couple of days when she has felt nauseous.
In the last week, we have had quite a bit of company. (Including a visit by Oma who took the bus and skytrain from Langley to our home in Burnaby). Monica seems to enjoy these visits and makes an effort to talk more with visitors and ask appropriate questions. Jesse was home for the weekend and we had some good family times. We are hoping that Daniel will be able to come to visit again next week.
Monica's leg strength continues to get weaker.Sometimes it is worse than others. But, so far we are coping reasonably well. We use the wheelchair in the house pretty much all the time but Monica is able to take the few steps which we need her to take in order to be able to transfer her from bed to wheelchair to shower to chair (and so forth).
For the most part Monica stays on the main floor of our house (avoiding the stairs) but we have figured out how to get her to the car so that we can still take her out.We still try to break up Monica's day with walks, picnics etc. and during the last week had a couple of nice walk.
We have a hospital bed set up in the dining room. Marley and I take turns sleeping nearby so that we can take her to the washroom as required during the night. Having Marley staying at home has been invaluable. When required there are two sets of hands and we are able to give each other breaks from the caregiving and still make sure that Monica is not left alone anymore.
Monica continues to get quieter (I think this is because she has trouble finding the words to express herself). She does however follow the conversations going on around her (or t.v.) and laughs at those jokes she likes (she still laughs if I bump my head). There have been some other changes. She is sleeping a bit more during the day and has had a couple of days when she has felt nauseous.
In the last week, we have had quite a bit of company. (Including a visit by Oma who took the bus and skytrain from Langley to our home in Burnaby). Monica seems to enjoy these visits and makes an effort to talk more with visitors and ask appropriate questions. Jesse was home for the weekend and we had some good family times. We are hoping that Daniel will be able to come to visit again next week.
Wednesday, July 3, 2013
Wednesday, July 3, 2013
(posted by Greg)
The MRI today confirmed what we suspected, namely that the tumour has grown (and is growing relatively quickly) and that the Temoxifen has not been effective. According to the oncologist, Monica will continue to get weaker, to have memory issues and to sleep more. He cannot predict Monica's life expectancy specifically but, when pressed by us, estimated a range of 2 to 3 months.
Based on the changes we have observed, this prognosis was not unexpected. Still, it is sobering to hear it from the oncologist. For now, we will be busy getting ourselves and our home prepared to provide more care for Monica as it is required.
The MRI today confirmed what we suspected, namely that the tumour has grown (and is growing relatively quickly) and that the Temoxifen has not been effective. According to the oncologist, Monica will continue to get weaker, to have memory issues and to sleep more. He cannot predict Monica's life expectancy specifically but, when pressed by us, estimated a range of 2 to 3 months.
Based on the changes we have observed, this prognosis was not unexpected. Still, it is sobering to hear it from the oncologist. For now, we will be busy getting ourselves and our home prepared to provide more care for Monica as it is required.
Monday, July 1, 2013
Monday, July 1, 2013
(posted by Greg)
Bittersweet times. Monica is still having lots of good moments but, at the same time, the progression in her condition continues to be obvious.
The good moments:
-several enjoyable visits with family and friend over the last week;
-Jesse was home for the weekend and we all drove to Langley for a visit with Oma (and got a bonus visit with Aunt Ida);
-a great picnic with Ingo, Oma, Jesse, Marley and me at Fraser Foreshore Park in Burnaby on Saturday- great table in the shade, bocci and good food [It was touching to see Oma interact with Monica. She took her for a private walk in her wheelchair,cut her food and generally did whatever she could to try to help Monica.]
- a long slow breakfast with our neighbour, Ed, yesterday
-today some good time with Jesse and Marley sitting around in the shade on our patio
However, she is significantly weaker. She is having much more difficulty moving around. This of course makes everything harder for us. We are using the wheelchair a lot even in the house and having to be more and more careful when she is moving. As well, she is struggling more often to express herself or make her wishes known. As a result she is generally quieter. We can't help but occasionally talk around her but we are frequently surprised when she reacts (with a joke or a denial) and realize that she is for the most part following (and enjoying) the conversation.
The prescription/supply of Temoxifen runs out tomorrow. We had considered stopping it but, in the end, elected to finish it off. Monica has an MRI on Wednesday and a follow-up appointment with the Oncologist later that day. I spoke with their office about this schedule and, again, was unsure if we should bother. We are going to go ahead with this appointment as it will perhaps allow the Oncologist to give us a better prediction of what to expect (symptom-wise) and a time-frame. This would help us with some planning and with the decision-making which we will inevitably face.
Monica is still not in any pain and is not having some of the common symptoms (headaches,seizures etc.) that accompany brain tumours. If you ask her "how are you?" , her reply is the same as it has been all along - "I'm fine!"). She continues to be peaceful and (fortunately) good-tempered. She is still patient with our teasing and bad jokes and occasionally surprises with a zinger of her own. I feel extremely lucky that she is this kind of person/patient.
Bittersweet times. Monica is still having lots of good moments but, at the same time, the progression in her condition continues to be obvious.
The good moments:
-several enjoyable visits with family and friend over the last week;
-Jesse was home for the weekend and we all drove to Langley for a visit with Oma (and got a bonus visit with Aunt Ida);
-a great picnic with Ingo, Oma, Jesse, Marley and me at Fraser Foreshore Park in Burnaby on Saturday- great table in the shade, bocci and good food [It was touching to see Oma interact with Monica. She took her for a private walk in her wheelchair,cut her food and generally did whatever she could to try to help Monica.]
- a long slow breakfast with our neighbour, Ed, yesterday
-today some good time with Jesse and Marley sitting around in the shade on our patio
However, she is significantly weaker. She is having much more difficulty moving around. This of course makes everything harder for us. We are using the wheelchair a lot even in the house and having to be more and more careful when she is moving. As well, she is struggling more often to express herself or make her wishes known. As a result she is generally quieter. We can't help but occasionally talk around her but we are frequently surprised when she reacts (with a joke or a denial) and realize that she is for the most part following (and enjoying) the conversation.
The prescription/supply of Temoxifen runs out tomorrow. We had considered stopping it but, in the end, elected to finish it off. Monica has an MRI on Wednesday and a follow-up appointment with the Oncologist later that day. I spoke with their office about this schedule and, again, was unsure if we should bother. We are going to go ahead with this appointment as it will perhaps allow the Oncologist to give us a better prediction of what to expect (symptom-wise) and a time-frame. This would help us with some planning and with the decision-making which we will inevitably face.
Monica is still not in any pain and is not having some of the common symptoms (headaches,seizures etc.) that accompany brain tumours. If you ask her "how are you?" , her reply is the same as it has been all along - "I'm fine!"). She continues to be peaceful and (fortunately) good-tempered. She is still patient with our teasing and bad jokes and occasionally surprises with a zinger of her own. I feel extremely lucky that she is this kind of person/patient.
Saturday, June 22, 2013
Saturday, June 22, 2013
(posted by Greg)
We have re-connected with the Homecare Service as it becomes more apparent that we may need some assistance sooner rather than later. As Monica gets weaker her balance is getting proportionately worse and we can see that we already need to help her with moving around We are taking more care to ensure that one of us is always nearby and we are adapting our house and sleeping arrangements etc so that Monica is not having to use the stairs any more than necessary.
The occupational therapist from Homecare visited with us yesterday and gave us some good recommendations. For example, if Monica wears a "transfer belt" , we have something to grip onto to help prevent her from falling. On Monday one of the Homecare nurses is going to make an initial visit to see how we are doing and what help we might be able to benefit from at this point.
Monica continues to be in fairly good spirits (still belly laughs when I bump my head or stub my toe!), Fortunately, she is not in pain and is not experiencing any of the headaches or seizures that often accompany brain tumours.
So far we have been able to get Monica out and about quite a bit.
-On Monday evening we joined some of my cousins and my brother Barry and his wife, Sharon, for some Chinese food.
-Ingo brought Oma to our house for soup on Tuesday.
- Marley used the wheelchair and took Monica to see her mom at her residence on Thursday. Ingo joined them and they played games for a couple of hours.
We have re-connected with the Homecare Service as it becomes more apparent that we may need some assistance sooner rather than later. As Monica gets weaker her balance is getting proportionately worse and we can see that we already need to help her with moving around We are taking more care to ensure that one of us is always nearby and we are adapting our house and sleeping arrangements etc so that Monica is not having to use the stairs any more than necessary.
The occupational therapist from Homecare visited with us yesterday and gave us some good recommendations. For example, if Monica wears a "transfer belt" , we have something to grip onto to help prevent her from falling. On Monday one of the Homecare nurses is going to make an initial visit to see how we are doing and what help we might be able to benefit from at this point.
Monica continues to be in fairly good spirits (still belly laughs when I bump my head or stub my toe!), Fortunately, she is not in pain and is not experiencing any of the headaches or seizures that often accompany brain tumours.
So far we have been able to get Monica out and about quite a bit.
-On Monday evening we joined some of my cousins and my brother Barry and his wife, Sharon, for some Chinese food.
-Ingo brought Oma to our house for soup on Tuesday.
- Marley used the wheelchair and took Monica to see her mom at her residence on Thursday. Ingo joined them and they played games for a couple of hours.
Monday, June 17, 2013
Monday, June 17, 2013
(posted by Greg)
Little signs of deterioration in Monica's situation, continue to pile up and the pace of change seems to be accelerating. Pretty crumby - but, so far anyway, I think seeing the changes is harder on the family than it is on Monica experiencing it.
We had a good weekend -Jesse and his girlfriend were here for the weekend- a couple of nice meals out for us- a picnic at Peace Arch Park and a good visit with Oma.
Little signs of deterioration in Monica's situation, continue to pile up and the pace of change seems to be accelerating. Pretty crumby - but, so far anyway, I think seeing the changes is harder on the family than it is on Monica experiencing it.
We had a good weekend -Jesse and his girlfriend were here for the weekend- a couple of nice meals out for us- a picnic at Peace Arch Park and a good visit with Oma.
Monday, June 10, 2013
Monday, June 10, 2013
(posted by Greg)
Some continuing deterioration in Monica's health as noted in the last blog but, so far, we have been able to carry on. Marley is still at home of course and she has now finished her exams. I think she plans on spending as much good time as she can with Monica .
I invited Daniel to come home for a week's visit. He arrived at the airport in Bellingham last Tuesday. Monica and I went down to meet him. The trip was made more eventful than it needed to be when I handed the U.S. Immigration Officer Monica's passport and Marley's passport (having left mine at home). We eventually got through but I had to do some fast-talking when we came back into Canada.
Daniel has been doing lots of visiting with Monica, Oma and I. I have attached a couple of pictures from last Thursday when we walked from Science World to Granville Island and then took the Aquabus back.
On Friday night, Marley and Daniel were both out with friends so Monica and I went out to a nice Malaysian restaurant in New Wesminster.
On the weekend, Daniel, Marley, Monica and I drove to Ucluelet. Jesse and his girlfriend, Sidney, were there visiting her family. We had a great trip- pleasant ferry trip, nice drive, good weather, goats on the roof at Coombs, etc. Sidney had arranged a very nice bed and breakfast for us (great view, nice hostess and good food). On Saturday, we walked the Wild Pacific Trail and really enjoyed that. With all of us we were able to take Monica along in her wheelchair. I have attached some photos from the walk. On Sunday, we helped Sidney's mom man a water station for a half-marathon. It was fun and we all had lunch at Black Rock (the upscale resort in Ucluelet). We finished off with another nice trip home. It was a bit tiring but we had a special time together.
Today, Daniel and Marley took Monica to visit her mom and to visit Ingo. Unfortunately, Daniel heads back to Boise tomorrow.
Some continuing deterioration in Monica's health as noted in the last blog but, so far, we have been able to carry on. Marley is still at home of course and she has now finished her exams. I think she plans on spending as much good time as she can with Monica .
I invited Daniel to come home for a week's visit. He arrived at the airport in Bellingham last Tuesday. Monica and I went down to meet him. The trip was made more eventful than it needed to be when I handed the U.S. Immigration Officer Monica's passport and Marley's passport (having left mine at home). We eventually got through but I had to do some fast-talking when we came back into Canada.
Daniel has been doing lots of visiting with Monica, Oma and I. I have attached a couple of pictures from last Thursday when we walked from Science World to Granville Island and then took the Aquabus back.
On Friday night, Marley and Daniel were both out with friends so Monica and I went out to a nice Malaysian restaurant in New Wesminster.
On the weekend, Daniel, Marley, Monica and I drove to Ucluelet. Jesse and his girlfriend, Sidney, were there visiting her family. We had a great trip- pleasant ferry trip, nice drive, good weather, goats on the roof at Coombs, etc. Sidney had arranged a very nice bed and breakfast for us (great view, nice hostess and good food). On Saturday, we walked the Wild Pacific Trail and really enjoyed that. With all of us we were able to take Monica along in her wheelchair. I have attached some photos from the walk. On Sunday, we helped Sidney's mom man a water station for a half-marathon. It was fun and we all had lunch at Black Rock (the upscale resort in Ucluelet). We finished off with another nice trip home. It was a bit tiring but we had a special time together.
Today, Daniel and Marley took Monica to visit her mom and to visit Ingo. Unfortunately, Daniel heads back to Boise tomorrow.
Sunday, May 26, 2013
Sunday, May 27, 2013
(posted by Greg)
I apologize (again) to faithful readers of this blog for (again) allowing so much time to pass between updates.
The drug which Monica is taking now (Tamoxifen) is taken in pill form. So, we don't have as many trips to and from the Cancer Agency. The dosage of the Tamoxifen is being increased each week (originally 1 pill twice a day and now three pills twice a day and ultimately it will be 5 pills twice a day). So far, Monica has not had any side effects to speak of from this drug. She had another Botox treatment for her arm on May 12th to help with the spasticity in her arm.
I think in earlier blogs I commented on Monica's smile (how great it is). Fortunately, she feels fine and finds lots to smile or laugh at (She particularly enjoys it if I stub my toe or bang my head). She is a bit tired of all the pills and vitamins and we've noticed that she makes some pretty interesting faces when trying to take the pills.
I am noticing that Monica does not seem as strong and struggles a bit more with her short term memory. But, overall, our lives continue much the same. Monica is still able to look after herself and move around not too badly (She retains her ability to supervise my housecleaning and to ensure that I am re-cycling properly.)
Jesse and his girlfriend, Sydney, have been here on a couple of weekends and we have had some nice family visits and dinners. Marley has been hunkered down studying for her finals which start next week. Ingo and I have been trying to make sure that Monica spends lots of time with he and Oma. (Yesterday, we met them in Fort Langley for a latte and a stroll-about. It was very enjoyable.)
Monica and I have also been visiting my side of the family quite bit. A couple of weeks ago Monica, my brother Barry and I drove to Abbotsford for a visit with my cousin, Dwight, his wife Bobbi and their family. We have also visited my brother Pat and his family in Maple Ridge. One evening recently my sister's kids came over with dinner (including specially baked, ketogenic goodies for Monica).
I have been concentrating more on the ketogenic diet for Monica. I only have about a .500 batting average as far as trying out new recipes go. I did invest in an electric scale which after weighing something will tell me what amunt of carbs, proteins and fat are in the item being weighed.
I apologize (again) to faithful readers of this blog for (again) allowing so much time to pass between updates.
The drug which Monica is taking now (Tamoxifen) is taken in pill form. So, we don't have as many trips to and from the Cancer Agency. The dosage of the Tamoxifen is being increased each week (originally 1 pill twice a day and now three pills twice a day and ultimately it will be 5 pills twice a day). So far, Monica has not had any side effects to speak of from this drug. She had another Botox treatment for her arm on May 12th to help with the spasticity in her arm.
I think in earlier blogs I commented on Monica's smile (how great it is). Fortunately, she feels fine and finds lots to smile or laugh at (She particularly enjoys it if I stub my toe or bang my head). She is a bit tired of all the pills and vitamins and we've noticed that she makes some pretty interesting faces when trying to take the pills.
I am noticing that Monica does not seem as strong and struggles a bit more with her short term memory. But, overall, our lives continue much the same. Monica is still able to look after herself and move around not too badly (She retains her ability to supervise my housecleaning and to ensure that I am re-cycling properly.)
Jesse and his girlfriend, Sydney, have been here on a couple of weekends and we have had some nice family visits and dinners. Marley has been hunkered down studying for her finals which start next week. Ingo and I have been trying to make sure that Monica spends lots of time with he and Oma. (Yesterday, we met them in Fort Langley for a latte and a stroll-about. It was very enjoyable.)
Monica and I have also been visiting my side of the family quite bit. A couple of weeks ago Monica, my brother Barry and I drove to Abbotsford for a visit with my cousin, Dwight, his wife Bobbi and their family. We have also visited my brother Pat and his family in Maple Ridge. One evening recently my sister's kids came over with dinner (including specially baked, ketogenic goodies for Monica).
I have been concentrating more on the ketogenic diet for Monica. I only have about a .500 batting average as far as trying out new recipes go. I did invest in an electric scale which after weighing something will tell me what amunt of carbs, proteins and fat are in the item being weighed.
Wednesday, May 8, 2013
May 8, 2013
(posted by Greg)
We got bad news yesterday from the oncologist. The recent MRI that Monica had shows that the Bev treatment is not working on the new tumour growth.. Unfortunately, with the Bev treatments now ruled out, there are not a lot of options left in the oncologist's arsenal. Monica's blood's reaction to the chemo precludes that type of treatment, more radiation is not an option and the effects of brain surgery in that area of the brain would likely cause her to lose her speech without eradicating the tumour.
The oncologist is going to give Monica some strong doses of a drug that is normally used for treating breast cancer. Apparently, this drug does sometimes slow down the growth of Monica's type of brain tumour. Monica was somewhat reluctant to start taking this new drug but agreed to do so because it is not likely to make her feel sick and may buy some more quality time.
I don't think that we were particularly surprised by this news. Monica really took the news well and asked a lot of pertinent, frank questions of the oncologist. In particular, she asked if he could predict how much "good" time she could expect. He explained that each tumour and each person is different and he could not say if it would be 6 weeks or 6 months.
As I said, Monica is really taking this news well. It will now take a few days for us to digest this news and figure out how to re-group and go forward.
We got bad news yesterday from the oncologist. The recent MRI that Monica had shows that the Bev treatment is not working on the new tumour growth.. Unfortunately, with the Bev treatments now ruled out, there are not a lot of options left in the oncologist's arsenal. Monica's blood's reaction to the chemo precludes that type of treatment, more radiation is not an option and the effects of brain surgery in that area of the brain would likely cause her to lose her speech without eradicating the tumour.
The oncologist is going to give Monica some strong doses of a drug that is normally used for treating breast cancer. Apparently, this drug does sometimes slow down the growth of Monica's type of brain tumour. Monica was somewhat reluctant to start taking this new drug but agreed to do so because it is not likely to make her feel sick and may buy some more quality time.
I don't think that we were particularly surprised by this news. Monica really took the news well and asked a lot of pertinent, frank questions of the oncologist. In particular, she asked if he could predict how much "good" time she could expect. He explained that each tumour and each person is different and he could not say if it would be 6 weeks or 6 months.
As I said, Monica is really taking this news well. It will now take a few days for us to digest this news and figure out how to re-group and go forward.
Thursday, May 2, 2013
Thursday, May 2, 2013
(posted by Greg)
Monica had a Bev treatment yesterday. The oncologist left a message saying that he would like to see us next Tuesday. I have to confess that I can't help but worry that he wants to give us some bad news about the last MRI. For those loyal followers of this blog, I will try to file something soon after that appointment.
Monica had a Bev treatment yesterday. The oncologist left a message saying that he would like to see us next Tuesday. I have to confess that I can't help but worry that he wants to give us some bad news about the last MRI. For those loyal followers of this blog, I will try to file something soon after that appointment.
Sunday, April 21, 2013
Sunday, April 21, 2013
(posted by Greg)
A quiet Sunday at home today lets me post a long overdue update.
Monica has continued with the Bev treatments which continue to go well. Tomorrow will be an important day as Monica will have another MRI tomorrow. Hopefully, it will show that the tumour is not growing and that the Bev treatments are helping again. Otherwise- ?
The past couple of weeks have been relatively quiet. We have done quite a few family things. Last Sunday, on the spur of the moment Monica went to another Rogue Folk Art event at St. James Hall.
This photo was taken at Easter. (Mollie is on Jesse's shoulders, Jesse's girlfriend, Sydney beside him, Ingo in the middle and neighbour, Ed, in the back left, Oma standing beside Monica)
Clowning around!
A quiet Sunday at home today lets me post a long overdue update.
Monica has continued with the Bev treatments which continue to go well. Tomorrow will be an important day as Monica will have another MRI tomorrow. Hopefully, it will show that the tumour is not growing and that the Bev treatments are helping again. Otherwise- ?
The past couple of weeks have been relatively quiet. We have done quite a few family things. Last Sunday, on the spur of the moment Monica went to another Rogue Folk Art event at St. James Hall.
This photo was taken at Easter. (Mollie is on Jesse's shoulders, Jesse's girlfriend, Sydney beside him, Ingo in the middle and neighbour, Ed, in the back left, Oma standing beside Monica)
Clowning around!
Sunday, March 31, 2013
Easter Sunday - March, 31, 2013
(posted by Greg)
Life around the Greiner household changed last Wednesday morning. Monica and I drove to Bellingam Airport and picked up Daniel and Mollie who are here for a few days on either side of the Easter break. Monica was a bit reluctant to go across the border because of concerns about health insurance etc. I talked her into going with me and I was glad that I did, The drive gave us a nice little road trip and I was rewarded with some fantastic smiles (Mollie's when she saw grandma and Monica's when she saw Mollie and Daniel).
So, our house is a bit noiser and newly re-decorated with all of the old toys that we had saved. (It is as painful as ever when you step on a piece of Lego!).
Jesse has the weekend off as well and came home. So, our house is full. Lots of cooking and dish-washing for me but lots of good family times. We are all enjoying Mollie immensely. She is really sweet ( I guess she takes after Monica's side of the family!) and seems to enjoy eveyrthing and everyone. Yesterday, the weather was good enough that we were able to go on an impromptu picnic. It was nice to get outside and we all had lots of fun watching Mollie attack the playground.
It may be my imagination but I can't help but feel that having Mollie and the kids at home is good medicine for Monica. I have attached a picture of Monica and her new hairdresser.
Life around the Greiner household changed last Wednesday morning. Monica and I drove to Bellingam Airport and picked up Daniel and Mollie who are here for a few days on either side of the Easter break. Monica was a bit reluctant to go across the border because of concerns about health insurance etc. I talked her into going with me and I was glad that I did, The drive gave us a nice little road trip and I was rewarded with some fantastic smiles (Mollie's when she saw grandma and Monica's when she saw Mollie and Daniel).
So, our house is a bit noiser and newly re-decorated with all of the old toys that we had saved. (It is as painful as ever when you step on a piece of Lego!).
Jesse has the weekend off as well and came home. So, our house is full. Lots of cooking and dish-washing for me but lots of good family times. We are all enjoying Mollie immensely. She is really sweet ( I guess she takes after Monica's side of the family!) and seems to enjoy eveyrthing and everyone. Yesterday, the weather was good enough that we were able to go on an impromptu picnic. It was nice to get outside and we all had lots of fun watching Mollie attack the playground.
It may be my imagination but I can't help but feel that having Mollie and the kids at home is good medicine for Monica. I have attached a picture of Monica and her new hairdresser.
Thursday, March 21, 2013
Thursday, March 21, 2013
(posted by Greg)
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I attached this picture to prove that Spring is indeed coming. I took this photo of the daffodils in front of our house with my camera yesterday. (I should also mention that this morning, when I took the garbage out, it was cold and there was a some unmelted snow on my back lawn.)
Monica had a Bev treatment on March 6th and had to go to the lab for blood and urine samples on the 19th and a follow-up visit with the nurse practitioner to make sure that her body was doing ok with the treatments. So far so good and she had another Bev treatment yesterday.
Monica gets the treatments at the chemo unit at the Cancer Agency. There are often a couple of other patients receiving various forms of chemotherapy in the same room. Invariably, there is some bonding among these patients and a sharing of stories (both sad and hopeful). Chemotherapy patients often have nausea problems from the treatments and we often hear stories about this. I am always glad that Monica has no problems with these treatments.
Like us, the patients we meet are often researching their illness on the web and experimenting with diets or supplements etc. Stories about these efforts are also shared. Yesterday, the man who shared the treatment room with Monica told us about a tea which he has purchased from Malaysia. He genuinely believes (which, I guess, is a good first step) that it can help him and he is going to give us the information so that we can order some. I am sure that we will be ordering some because, like everyone else, we like to hope that we will stumble on something that will help with Monica's tumour.
Last week we attended a nutritional information session at the Cancer Agency for brain tumour patients. Much of the information was a repeat of things that we have learned in the last couple of years about healthy eating. Unfortunately, I was not able to get any information about the ketogenic diet or any suggestions about how we can monitor such a diet (to make sure there are no negative effects on the body). However, the nutritionist who spoke at the meeting suggested that I follow up with her and that she may be able to point us in the right direction. Monica and I are both eating a very low carbohydrate diet at the moment and she continues to take the vitamins and supplements recommended by InspireHealth. I am continually trying to modify Monica's diet so that it complies with the ketogenic requirements. We are both getting more and more used to not eating carbohydrates and both feel pretty good. Thankfully, so far we have not noticed any new or further symptoms from Monica's tumour.
Daniel and Mollie are coming for a visit at Easter. We are all looking forward to that.
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I attached this picture to prove that Spring is indeed coming. I took this photo of the daffodils in front of our house with my camera yesterday. (I should also mention that this morning, when I took the garbage out, it was cold and there was a some unmelted snow on my back lawn.)
Monica had a Bev treatment on March 6th and had to go to the lab for blood and urine samples on the 19th and a follow-up visit with the nurse practitioner to make sure that her body was doing ok with the treatments. So far so good and she had another Bev treatment yesterday.
Monica gets the treatments at the chemo unit at the Cancer Agency. There are often a couple of other patients receiving various forms of chemotherapy in the same room. Invariably, there is some bonding among these patients and a sharing of stories (both sad and hopeful). Chemotherapy patients often have nausea problems from the treatments and we often hear stories about this. I am always glad that Monica has no problems with these treatments.
Like us, the patients we meet are often researching their illness on the web and experimenting with diets or supplements etc. Stories about these efforts are also shared. Yesterday, the man who shared the treatment room with Monica told us about a tea which he has purchased from Malaysia. He genuinely believes (which, I guess, is a good first step) that it can help him and he is going to give us the information so that we can order some. I am sure that we will be ordering some because, like everyone else, we like to hope that we will stumble on something that will help with Monica's tumour.
Last week we attended a nutritional information session at the Cancer Agency for brain tumour patients. Much of the information was a repeat of things that we have learned in the last couple of years about healthy eating. Unfortunately, I was not able to get any information about the ketogenic diet or any suggestions about how we can monitor such a diet (to make sure there are no negative effects on the body). However, the nutritionist who spoke at the meeting suggested that I follow up with her and that she may be able to point us in the right direction. Monica and I are both eating a very low carbohydrate diet at the moment and she continues to take the vitamins and supplements recommended by InspireHealth. I am continually trying to modify Monica's diet so that it complies with the ketogenic requirements. We are both getting more and more used to not eating carbohydrates and both feel pretty good. Thankfully, so far we have not noticed any new or further symptoms from Monica's tumour.
Daniel and Mollie are coming for a visit at Easter. We are all looking forward to that.
Monday, March 4, 2013
Monday, March 4, 2013
(posted by Greg)
Healthwise, the past week was relatively quiet. Monica's physiotherapy at Holy Family Hospital has ended for a while. She will go back for a follow-up with them in April. There were no Bev treatments last week. The next visit to the Lab and treatment is scheduled for Wednesday this week. Monica continues to feel the same and I haven't noticed any changes in her.
Last Tuesday evening we went to a free presentation on Botswana which was sponsored by a local travel agent. The presenter was the co-owner of a company which leads safaris into the Okavango Delta. It was a very interesting evening. The pictures and stories were fascinating. African safaris weren't on our respective bucket lists but we both came away feeling quite interested. It made for a stimulating evening.
The past weekend we had a good visit with Oma (who continues to do wonderfully well) on Saturday night and had Ingo over for soup last night.
Healthwise, the past week was relatively quiet. Monica's physiotherapy at Holy Family Hospital has ended for a while. She will go back for a follow-up with them in April. There were no Bev treatments last week. The next visit to the Lab and treatment is scheduled for Wednesday this week. Monica continues to feel the same and I haven't noticed any changes in her.
Last Tuesday evening we went to a free presentation on Botswana which was sponsored by a local travel agent. The presenter was the co-owner of a company which leads safaris into the Okavango Delta. It was a very interesting evening. The pictures and stories were fascinating. African safaris weren't on our respective bucket lists but we both came away feeling quite interested. It made for a stimulating evening.
The past weekend we had a good visit with Oma (who continues to do wonderfully well) on Saturday night and had Ingo over for soup last night.
Wednesday, February 20, 2013
Wednesday, February 20, 2013
(posted by Greg)
Monica got through a busy day with flying colours - physio, lunch with the girls from the office and the bev treatment. The physiotherapist got to work on "sleepy" Monica as I inadvertently gave her a muscle relaxant just before the physio session (usually I wait until after).
Monica got through a busy day with flying colours - physio, lunch with the girls from the office and the bev treatment. The physiotherapist got to work on "sleepy" Monica as I inadvertently gave her a muscle relaxant just before the physio session (usually I wait until after).
Tuesday, February 19, 2013
Tuesday, February 19,2012
(posted by Greg)
Our weekend was pretty relaxed but enjoyable. Monica and I got quite a few errands done. On Sunday, we went to a Chinese New Years event sponsored by CIBC. It was more designed for young families but it was fun to get out. Afterwords, we did a "walk and roll" on Robson Street.
Yesterday, Monica had a dentist appointment and today she went to her hairdresser in Steveston and got her hair trimmed (she looks pretty good!)
Tomorrow will be a busy day. Physio in the morning, lunch with the girls from the office (one of them is leaving) and the first of the new Bev treatments tomorrow afternoo.
Our weekend was pretty relaxed but enjoyable. Monica and I got quite a few errands done. On Sunday, we went to a Chinese New Years event sponsored by CIBC. It was more designed for young families but it was fun to get out. Afterwords, we did a "walk and roll" on Robson Street.
Yesterday, Monica had a dentist appointment and today she went to her hairdresser in Steveston and got her hair trimmed (she looks pretty good!)
Tuesday, February 12, 2013
Tuesday, February 12, 2013
(posted by Greg)
It was Monica's birthday on the 10th . Monica, Marley, Ingo, Oma and I went out for a nice dinner at the Onyx in White Rock. Otherwise, we had a nice (but quiet) long weekend.
Unfortunately, we got some bad news today. Monica's MRI today showed two growths in another part of the brain. So, the oncologist is having Monica start on the Bev treatment again as soon as it can be scheduled.
We had felt that Monica was doing well (she was certainly feeling good). As a result, we were feeling optimistic about this MRI and,as you can imagine, this news was a bit of a shock. Although I am sure that she is rattled by this news, Monica is handling it quite well.
It was Monica's birthday on the 10th . Monica, Marley, Ingo, Oma and I went out for a nice dinner at the Onyx in White Rock. Otherwise, we had a nice (but quiet) long weekend.
Unfortunately, we got some bad news today. Monica's MRI today showed two growths in another part of the brain. So, the oncologist is having Monica start on the Bev treatment again as soon as it can be scheduled.
We had felt that Monica was doing well (she was certainly feeling good). As a result, we were feeling optimistic about this MRI and,as you can imagine, this news was a bit of a shock. Although I am sure that she is rattled by this news, Monica is handling it quite well.
Tuesday, February 5, 2013
Tuesday, February 5, 2013
(posted by Greg)
Not a lot to blog about : Monica and I have been in our regular routine the last couple of weeks. Monica is working quite a bit on the computer each day and I have been working quite a bit. Our physiotherapy re-commences this week and today we went to the local lab to get some tests done in preparation for Monica's next MRI. It is scheduled for February 12th
Last Friday Monica and I went our for dinner with some friends and attended a Gospel Concert at St. Andrew's Wesley downtown. The concert was packed . I am sure that church has only occasionally been that full. We really enjoyed the concert and all-in-all had a good evening. One of the performers at the concert was Leon Bibb. He is turning 91 but his voice and stage presence were wonderful.
The prior week we went to the H.R. McMillan Space Centre. It was bit nostalgic as we went there often when the kids were small.
Not a lot to blog about : Monica and I have been in our regular routine the last couple of weeks. Monica is working quite a bit on the computer each day and I have been working quite a bit. Our physiotherapy re-commences this week and today we went to the local lab to get some tests done in preparation for Monica's next MRI. It is scheduled for February 12th
Last Friday Monica and I went our for dinner with some friends and attended a Gospel Concert at St. Andrew's Wesley downtown. The concert was packed . I am sure that church has only occasionally been that full. We really enjoyed the concert and all-in-all had a good evening. One of the performers at the concert was Leon Bibb. He is turning 91 but his voice and stage presence were wonderful.
The prior week we went to the H.R. McMillan Space Centre. It was bit nostalgic as we went there often when the kids were small.
Wednesday, January 23, 2013
Wednesday, January 23, 2013
I wanted to try attaching a picture. (I'm thinking that, if a picture is worth a 1000 words, then a photo will help me catch up on the blogging.) The photo attached was taken (I think by Jesse's phone )this past Xmas.
Monica and I joined a friend for lunch yesterday at the White Spot and enjoyed ourselves.
Today I left work early so that we could attend a 5:30 Health Recovery Tai Chi class at G.F. Strong. It was a small group. Most of the exercises were done sitting down (which helped Monica and enabled her to enjoy it more). She worked quite hard. I think that we may try more of these Health Recovery classes.
Monday, January 21, 2013
Monday, January 21, 2013
(posted by Greg)
Top 10 Possible excuses for not keeping the blog up-to date:
10. Been busy with preparations for Obama's inauguration;
9. low carb diet has affected my typing skills;
8. I have been distracted --- trying to remember why I put the string on my finger;
7. I have been frozen to inaction by the sheer drama of the NHL lockout negotiations;
6. There is a higher priority: figuring out why I keep leaving the stove on;
5. I have been too busy keeping all of my other New Year's resolutions;
4. I am observing one of the ancient laws of Festivus: no blogging is allowed before January 21st;
3. I know I put the login password for the blog in a safe place;
2. Confused trying to figure out what season it is: "The actual Christmas season continues until the Feast of the Baptism of Christ, which in the present form of the Roman Rite is celebrated on the Sunday after 6 January. In the pre-1970 form, this feast is celebrated on 13 January, unless 13 January is a Sunday, in which case the feast of the Holy Family is celebrated instead.[10] Until the suppression of the Octave of the Epiphany in the 1960 reforms, 13 January was the Octave day of the Epiphany, providing the date for the end of the season."
1. Can't bear to again write: "I am sorry to those faithful readers of this blog but I can't believe how much time has slipped by since the last entry!"
Our New Year has been fairly uneventful as we have settled into what is now our regular routine. The routine visits to the Drs were broken up by a couple of visits to the dentist as Monica had to have a root canal.
Monica has had a couple of physio treatments since the New Year. She enjoys having the physiotherapist work on her arm. So, I am thinking of maybe arranging for some massage therapy just because I think she will enjoy it.
We attended the Spasticity Clinic at G.F. Strong Rehabilitation Centre for an assessment of the botox treatments. Because the next botox treatment was already scheduled for the beginning of February, they decided to give the next treatment that day. The staff and Drs. there are quite impressive. I am glad they gave Monica the treatment a little early as the treatment from October was noticeably starting to wear off. Her arm is much more relaxed now.
The physio will resume again in couple of weeks (after this latest botox treatment has had a chance to work).
The next MRI is scheduled for early February. So, we are looking forward (not sure if this is the best description) to it. I am not noticing any change in Monica so I am (naturally) hoping that the MRI results will again be positive.
-
Top 10 Possible excuses for not keeping the blog up-to date:
10. Been busy with preparations for Obama's inauguration;
9. low carb diet has affected my typing skills;
8. I have been distracted --- trying to remember why I put the string on my finger;
7. I have been frozen to inaction by the sheer drama of the NHL lockout negotiations;
6. There is a higher priority: figuring out why I keep leaving the stove on;
5. I have been too busy keeping all of my other New Year's resolutions;
4. I am observing one of the ancient laws of Festivus: no blogging is allowed before January 21st;
3. I know I put the login password for the blog in a safe place;
2. Confused trying to figure out what season it is: "The actual Christmas season continues until the Feast of the Baptism of Christ, which in the present form of the Roman Rite is celebrated on the Sunday after 6 January. In the pre-1970 form, this feast is celebrated on 13 January, unless 13 January is a Sunday, in which case the feast of the Holy Family is celebrated instead.[10] Until the suppression of the Octave of the Epiphany in the 1960 reforms, 13 January was the Octave day of the Epiphany, providing the date for the end of the season."
1. Can't bear to again write: "I am sorry to those faithful readers of this blog but I can't believe how much time has slipped by since the last entry!"
Our New Year has been fairly uneventful as we have settled into what is now our regular routine. The routine visits to the Drs were broken up by a couple of visits to the dentist as Monica had to have a root canal.
Monica has had a couple of physio treatments since the New Year. She enjoys having the physiotherapist work on her arm. So, I am thinking of maybe arranging for some massage therapy just because I think she will enjoy it.
We attended the Spasticity Clinic at G.F. Strong Rehabilitation Centre for an assessment of the botox treatments. Because the next botox treatment was already scheduled for the beginning of February, they decided to give the next treatment that day. The staff and Drs. there are quite impressive. I am glad they gave Monica the treatment a little early as the treatment from October was noticeably starting to wear off. Her arm is much more relaxed now.
The physio will resume again in couple of weeks (after this latest botox treatment has had a chance to work).
The next MRI is scheduled for early February. So, we are looking forward (not sure if this is the best description) to it. I am not noticing any change in Monica so I am (naturally) hoping that the MRI results will again be positive.
-
Tuesday, January 1, 2013
Tuesday, January 1, 2013
(posted by Greg)
It seems hard to believe that it is January 1st and that we have already started a new year. The holidays seemed to speed by in a blur. Monica and I were quite busy:
- the office Xmas Party at the Giggle Dam in Port Coquitlam on December 13th
-the Beedie Group Xmas Party at the Red Robinson Theatre on Decembe 15th
-cleaning up the house for the season
-putting up the Xmas lights (yes- I waited until the coldest and wettest day again-apparently a tradition)
-Jesse came home on the 2st
-family get together and pot luck on December 22nd to make the pork pies which we traditionally have on Xmas morning- it was a lot of fun!
-shopping for food on the morning of the 23rd.
-Marley and I drove to Seattle to pick up Daniel on the afternoon of the 23rd.
-I made breakfast on the 24th at 7:00 am for most of my family (Since 1950 my older brother has been going to the cemetery to lay a family wreath. One of our favourite traditions is to have breakfast and go to the cemetery near my house where family and friends are buried to lay wreaths.- In many ways, this is the highlight of Xmas for me.)
-I did my last minute shopping and cooked a ham on the rest of the 24th while Jesse made perogies (Oma style)
-Marley, Monica, and Jesse picked up Ross, Marley's boyfriend at the airport in the afternoon of the 24th and put a wreath near the bench which had been dedicated to Opa near the family home in Steveston.
-a nice Xmas Eve Dinner with all the kids, Ross, Ingo and Oma
-I prepared Xmas morning breakfast for all plus our neighbour, Ed.
-I cooked Xmas dinner all day Xmas day,- Monica had a nice visit with her mom and with the kids
-a nice family xmas dinner
--I collapsed in a heap on the 26th - Oh -did I mention that Santa brought me some dishpan hands for Xmas.
-lots of relaxing and visiting in the run up to new years
-Monica and I got up early (4:00 am) on the 31st and drove Daniel back to catch his plane in Seattle
-Monica and I had a chance to visit my cousing Maurice and his wife Zelma in Seattle for a couple of houts
-a quick stop at Bellis Fair on the way home
-dinner and movies at Ingo's on New Year's eve
-another collapse in a heap on the 1st with a nice visit to Oma.
I am grateful that we are together and starting another new year. I appreciate the support and encouragemen which Monica and I get from everyone. Happy New Year to you all!
It seems hard to believe that it is January 1st and that we have already started a new year. The holidays seemed to speed by in a blur. Monica and I were quite busy:
- the office Xmas Party at the Giggle Dam in Port Coquitlam on December 13th
-the Beedie Group Xmas Party at the Red Robinson Theatre on Decembe 15th
-cleaning up the house for the season
-putting up the Xmas lights (yes- I waited until the coldest and wettest day again-apparently a tradition)
-Jesse came home on the 2st
-family get together and pot luck on December 22nd to make the pork pies which we traditionally have on Xmas morning- it was a lot of fun!
-shopping for food on the morning of the 23rd.
-Marley and I drove to Seattle to pick up Daniel on the afternoon of the 23rd.
-I made breakfast on the 24th at 7:00 am for most of my family (Since 1950 my older brother has been going to the cemetery to lay a family wreath. One of our favourite traditions is to have breakfast and go to the cemetery near my house where family and friends are buried to lay wreaths.- In many ways, this is the highlight of Xmas for me.)
-I did my last minute shopping and cooked a ham on the rest of the 24th while Jesse made perogies (Oma style)
-Marley, Monica, and Jesse picked up Ross, Marley's boyfriend at the airport in the afternoon of the 24th and put a wreath near the bench which had been dedicated to Opa near the family home in Steveston.
-a nice Xmas Eve Dinner with all the kids, Ross, Ingo and Oma
-I prepared Xmas morning breakfast for all plus our neighbour, Ed.
-I cooked Xmas dinner all day Xmas day,- Monica had a nice visit with her mom and with the kids
-a nice family xmas dinner
--I collapsed in a heap on the 26th - Oh -did I mention that Santa brought me some dishpan hands for Xmas.
-lots of relaxing and visiting in the run up to new years
-Monica and I got up early (4:00 am) on the 31st and drove Daniel back to catch his plane in Seattle
-Monica and I had a chance to visit my cousing Maurice and his wife Zelma in Seattle for a couple of houts
-a quick stop at Bellis Fair on the way home
-dinner and movies at Ingo's on New Year's eve
-another collapse in a heap on the 1st with a nice visit to Oma.
I am grateful that we are together and starting another new year. I appreciate the support and encouragemen which Monica and I get from everyone. Happy New Year to you all!
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