Mom is better today. All of us are She actually got up and walked a bit and ate today too. I could never have imagined that yesterday.
Lots of visitors: Charlie and Susan, Uncle Ted and Aunt June, Chris me and Dad, Amy and Mike, Drew and Jess.
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Friday, September 30, 2011
Thursday, September 29, 2011
Mother Continues The Same
We are not seeing much change. She is not eating and having trouble taking water. Weaker and weaker. Aware and able to respond though, still.
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- Posted using BlogPress from my iPhone
Just realized one of my posts never came through, from last evening
Yesterday, she had eaten breakfast (just a few cookies and a little coffee) and went back to bed and stayed all day. When we questioned her she said she was just resting, or didn't feel like getting up, she admitted to Charlie she couldn't get up, but told the home health nurse that she was just resting up for the movie in the evening, so we were concerned, but waiting it out, thinking maybe her vomiting the day before had upset or depressed her just as she was getting ready for chemo. She didn't want any pain meds or any liquid at all, and she never got up at all.
At about five last evening Mother complained of extreme pain, and admitted she could not get up. I called home health and they said they had nothing on order they could give her so it would be a while before we could get a doctor's script and get it filled at that hour. Rather than have her wait so long we decided to call the squad so her pain could be treated. They took her to Southeast Med where they administered comfort care, but at our request, no further tests. They were unable to transfer her to Autumn last evening, so we brought her home for the night with oral pain meds, which she was able to take and was comfortable through the night.
At about five last evening Mother complained of extreme pain, and admitted she could not get up. I called home health and they said they had nothing on order they could give her so it would be a while before we could get a doctor's script and get it filled at that hour. Rather than have her wait so long we decided to call the squad so her pain could be treated. They took her to Southeast Med where they administered comfort care, but at our request, no further tests. They were unable to transfer her to Autumn last evening, so we brought her home for the night with oral pain meds, which she was able to take and was comfortable through the night.
Starting Hospice Today
After consulting with The James, Dad decided not to pursue any more treatment for Mom's cancer, but to instead begin Hospice.
United Transport picked her up around 1:00 PM and Dad and Charlie followed to Autumn in Charlie's truck. I'm to go within the hour, also.
Hospice. Chemotherapy. Radiation. Cancer. All words that scare me to pieces and all words that I have been saying over and over, more than anyone else in the family, as I make all the calls and arrangements.
Today more than any other day my whole body is tight and scared. One can't sever a fifty-three year relationship without extreme pain, I suppose. It's a testament to my Mother that we all hurt so much to see her in pain. She is the one who taught us these higher emotions: empathy, compassion, love. Through her daily example, we learned them, and learned them well. She will leave a legacy of good and strong people in her wake. We have had a wonderful life with her.
Bless her. I hope her wait for heaven is brief.
Mom's "Bananagram" Monday
United Transport picked her up around 1:00 PM and Dad and Charlie followed to Autumn in Charlie's truck. I'm to go within the hour, also.
Hospice. Chemotherapy. Radiation. Cancer. All words that scare me to pieces and all words that I have been saying over and over, more than anyone else in the family, as I make all the calls and arrangements.
Today more than any other day my whole body is tight and scared. One can't sever a fifty-three year relationship without extreme pain, I suppose. It's a testament to my Mother that we all hurt so much to see her in pain. She is the one who taught us these higher emotions: empathy, compassion, love. Through her daily example, we learned them, and learned them well. She will leave a legacy of good and strong people in her wake. We have had a wonderful life with her.
Bless her. I hope her wait for heaven is brief.
Mom's "Bananagram" Monday
OK this morning, Autumn bound
Dad and I had a passable night, each getting a little sleep.
Mother woke much more lucid and talking in full sentences again. She wanted to be sat up a bit and although Dad and I tried we could not begin to do it.
Her pain was back up to 8-9 in her head and spine so we gave the oral pain med and she slept again very quickly. She has opened her eyes a few times and said she's OK when I asked.
I've been on the phone with Autumn, Dr Starr the PCP, United Transport, The James, and the local Radiologist. I am waiting on calls back from the last two, but the others agree and are lining up the transport to Autumn on Dr Starr's order.
Scratch that, the Radiologist office just called. We cancelled today's appointment and are waiting for discussion with the James to decide what else to do.
Dad was so exhausted he could hardly stand steady so he's trying to sleep now. Charlie's here to help when the transport comes.
Prayers, please.
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Mother woke much more lucid and talking in full sentences again. She wanted to be sat up a bit and although Dad and I tried we could not begin to do it.
Her pain was back up to 8-9 in her head and spine so we gave the oral pain med and she slept again very quickly. She has opened her eyes a few times and said she's OK when I asked.
I've been on the phone with Autumn, Dr Starr the PCP, United Transport, The James, and the local Radiologist. I am waiting on calls back from the last two, but the others agree and are lining up the transport to Autumn on Dr Starr's order.
Scratch that, the Radiologist office just called. We cancelled today's appointment and are waiting for discussion with the James to decide what else to do.
Dad was so exhausted he could hardly stand steady so he's trying to sleep now. Charlie's here to help when the transport comes.
Prayers, please.
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Wednesday, September 28, 2011
Home resting quietly
Mother has been transported home and is resting quietly in the living room where Charlie and Kyle (Sadie's boyfriend) set up the double bed that had been downstairs.
She has opened her eyes briefly and recognized people and greeted them briefly. Chris, John and Jenna came down to see her. She has been able to tell her pain level and drink a little water but that's all. She can move her arms and legs but not her torso at all.
Dad and I will stay with her in shifts tonight. Tomorrow we have to decide about hospice or chemotherapy, here or at Autumn. Chemotherapy and radiation don't seem possible at all now, but she has surprised us before.
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She has opened her eyes briefly and recognized people and greeted them briefly. Chris, John and Jenna came down to see her. She has been able to tell her pain level and drink a little water but that's all. She can move her arms and legs but not her torso at all.
Dad and I will stay with her in shifts tonight. Tomorrow we have to decide about hospice or chemotherapy, here or at Autumn. Chemotherapy and radiation don't seem possible at all now, but she has surprised us before.
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Tuesday, September 27, 2011
Radiation and Chemo start Thursday
We had a lot of activity today, a lot of calls, and a visit from the Home Healthcare Aid. We learned that the first radiation treatment will be at 4:00 Thursday, so chemo will start then, too.
Mom seemed to have a good day, although we're seeing her get "stuck" - just sitting immobile, although she says she wants to do something and wants to go somewhere, but then she doesn't, she just stays there. I tried offering my arm as we were getting ready to go to dinner, but she just stayed. Finally she said she was annoyed with Dad, tired of him being on her all the time to do something, with everyone "picking, poking, prodding" her, telling her what to do like she can't know herself. She wants to be an adult with her own life, her own will and decide on her own when she wants to do things. I pointed out that if it weren't Dad doing the prodding, it would be strangers at Autumn, and she didn't like that either. Someone has to help care for her and get her through her routine. I explained that I think the tumors are seeming to cause her to get "stuck", so that although she thinks she wants to act, she doesn't, and maybe we could help her with that. I agreed with her that we want her to be independent, too, that no one is trying to take that away from her - far from it. But we don't always know the best way to help and she's going to have to tell us. Also, that the tumors are going to maybe play tricks on her so that she may think things that are not real or true, and she's going to have to learn to trust us and rely on us to help her see what's true. She said she's tired of Daddy being angry all the time. I said he's mad at the world right now and is having a lot of his own pain watching her be sick, and rather than be sad, because sad is not comfortable for him, he's just mad.
I don't know if any of that made sense, then, or now in the repeating. We're just groping our way here. I'm glad she opened up a bit and said what's bugging her, that something is bugging her. Later when I caught myself asking if I could help her with something, I just stopped myself and said, "OK, I'm not going to ask that any more. You're going to have to tell us when you do and don't want help."
And...like another time back at Autumn, right when she was feeling her oats just a little and declaring some independence, she had a set-back.
We did finally go to dinner at a new little Amish place in Quaker City. It was a very good dinner - we all had the special, chicken and dumplings, and pie. She seemed quite well at dinner and ate a lot and Dad was really pleased to have her show some appetite. Then, when she went to the restroom afterwards, she got icy-cold and shaking, then got in the car and threw up all of her dinner. [Please don't mention this to her!] She also seemed a little disoriented for a bit, but quickly seemed to get back to normal, other than the mess. We got her home and settled for bed easily and she went quickly with no further resistance.
This damn disease is maddening! I know that Dad, like me, is watching her very carefully for any next sign of decline, and any small sign shoots right through him, physically, like a personal threat, like it does to me. He and I both stayed very calm during the small crisis, but both worried afterwards that this may be a sign of trouble to come. Will she keep throwing up now? How can she hold down chemo? How do we clean up chemo-barf, when we're not even supposed to touch the medication capsule? How is Dad ever going to get her to radiation on time if she keeps getting "stuck" and sits even though she says she's going and appears to be trying to be compliant? She doesn't want to bring Evinrude any more, but where do we put her if she goes out while walking somewhere? With Evinrude we'd have a chance of getting her set down before she fell down. It's a struggle between supporting her "person-hood" and independence and needing to plan for contingencies and what-ifs and worst-case scenarios. Sometimes it seems we'd have to restrain her and force her compliance to get her through the chemo and radiation routine. Even though she says she wants to do it, she doesn't seem capable of either carrying it out herself or complying with it. It is maddening and very frustrating for all of us.
I'm feeling very negative about a positive outcome with this chemo and radiation routine that's coming. As much as I need to go home to Tucson, it's going to hurt not to be here, too.
Mom seemed to have a good day, although we're seeing her get "stuck" - just sitting immobile, although she says she wants to do something and wants to go somewhere, but then she doesn't, she just stays there. I tried offering my arm as we were getting ready to go to dinner, but she just stayed. Finally she said she was annoyed with Dad, tired of him being on her all the time to do something, with everyone "picking, poking, prodding" her, telling her what to do like she can't know herself. She wants to be an adult with her own life, her own will and decide on her own when she wants to do things. I pointed out that if it weren't Dad doing the prodding, it would be strangers at Autumn, and she didn't like that either. Someone has to help care for her and get her through her routine. I explained that I think the tumors are seeming to cause her to get "stuck", so that although she thinks she wants to act, she doesn't, and maybe we could help her with that. I agreed with her that we want her to be independent, too, that no one is trying to take that away from her - far from it. But we don't always know the best way to help and she's going to have to tell us. Also, that the tumors are going to maybe play tricks on her so that she may think things that are not real or true, and she's going to have to learn to trust us and rely on us to help her see what's true. She said she's tired of Daddy being angry all the time. I said he's mad at the world right now and is having a lot of his own pain watching her be sick, and rather than be sad, because sad is not comfortable for him, he's just mad.
I don't know if any of that made sense, then, or now in the repeating. We're just groping our way here. I'm glad she opened up a bit and said what's bugging her, that something is bugging her. Later when I caught myself asking if I could help her with something, I just stopped myself and said, "OK, I'm not going to ask that any more. You're going to have to tell us when you do and don't want help."
And...like another time back at Autumn, right when she was feeling her oats just a little and declaring some independence, she had a set-back.
We did finally go to dinner at a new little Amish place in Quaker City. It was a very good dinner - we all had the special, chicken and dumplings, and pie. She seemed quite well at dinner and ate a lot and Dad was really pleased to have her show some appetite. Then, when she went to the restroom afterwards, she got icy-cold and shaking, then got in the car and threw up all of her dinner. [Please don't mention this to her!] She also seemed a little disoriented for a bit, but quickly seemed to get back to normal, other than the mess. We got her home and settled for bed easily and she went quickly with no further resistance.
This damn disease is maddening! I know that Dad, like me, is watching her very carefully for any next sign of decline, and any small sign shoots right through him, physically, like a personal threat, like it does to me. He and I both stayed very calm during the small crisis, but both worried afterwards that this may be a sign of trouble to come. Will she keep throwing up now? How can she hold down chemo? How do we clean up chemo-barf, when we're not even supposed to touch the medication capsule? How is Dad ever going to get her to radiation on time if she keeps getting "stuck" and sits even though she says she's going and appears to be trying to be compliant? She doesn't want to bring Evinrude any more, but where do we put her if she goes out while walking somewhere? With Evinrude we'd have a chance of getting her set down before she fell down. It's a struggle between supporting her "person-hood" and independence and needing to plan for contingencies and what-ifs and worst-case scenarios. Sometimes it seems we'd have to restrain her and force her compliance to get her through the chemo and radiation routine. Even though she says she wants to do it, she doesn't seem capable of either carrying it out herself or complying with it. It is maddening and very frustrating for all of us.
I'm feeling very negative about a positive outcome with this chemo and radiation routine that's coming. As much as I need to go home to Tucson, it's going to hurt not to be here, too.
Nurse Visit Yesterday A-OK
I should have posted that the nurse came and took vitals and all is A-OK with Mom.
Monday, September 26, 2011
Coming Home to Tucson Tuesday, October 4th - A Week from Tomorrow
I finally decided to book the flight even though Symphony hasn't let me know a start date at Cedars Sinai. I did work on my 2010 taxes today and found that I don't have everything I need to finish them with me, although I tried to grab it all that day long ago back in July when I packed frantically and left to come "home". They're due 10/16, and that's just one of many reasons I need to get back.
My medication shipments have become nightmarish, also.
And this house is too damn hot!!! Seriously, 82 degrees and rain-forest humidity is crazy!!! That's enough to make you sick!
Odd how I'm using that word, "home", these days. I just read a book about Swedish immigrants to America in the 19th century, and it was such a horrible journey and irrevocably a one-way trip, for most. They just didn't have the means to go back if they wanted to. The lead character keeps trying to adjust her thinking to "Home, America", and "Away, Sweden", but it doesn't work for her.
I think my Blog here has "Visits Home" as a Label, and that originally meant "Back to Ohio". Now I'm talking about "Home" as Tucson. I have missed it, a lot. I've missed being in my own home, A LOT! And even though I'm going to be super-paranoid about all the critters my neighbors in Tucson have been seeing, I still want to go back. Uh...the latest was a mating pair of rattlesnakes - rather large ones - on a neighbor's front stoop. Really scary photos, those were. But still - I want to go back. It felt like the right place for me. I felt well there. And I miss my mountains.
So...CMH nonstop to PHX on Southwest Airlines - here we come!!
My medication shipments have become nightmarish, also.
And this house is too damn hot!!! Seriously, 82 degrees and rain-forest humidity is crazy!!! That's enough to make you sick!
Odd how I'm using that word, "home", these days. I just read a book about Swedish immigrants to America in the 19th century, and it was such a horrible journey and irrevocably a one-way trip, for most. They just didn't have the means to go back if they wanted to. The lead character keeps trying to adjust her thinking to "Home, America", and "Away, Sweden", but it doesn't work for her.
I think my Blog here has "Visits Home" as a Label, and that originally meant "Back to Ohio". Now I'm talking about "Home" as Tucson. I have missed it, a lot. I've missed being in my own home, A LOT! And even though I'm going to be super-paranoid about all the critters my neighbors in Tucson have been seeing, I still want to go back. Uh...the latest was a mating pair of rattlesnakes - rather large ones - on a neighbor's front stoop. Really scary photos, those were. But still - I want to go back. It felt like the right place for me. I felt well there. And I miss my mountains.
So...CMH nonstop to PHX on Southwest Airlines - here we come!!
Chemo Drugs Arrived
Today the the UPS guy, or "Big Brown Man", as an acquaintance's daughter calls him, brought Mother's chemo drugs first thing. The James had them shipped from a Columbus pharmacy.
Dad is really scared about doing this, and he made Mom promise to cooperate. The chemo came with one pill per bottle for 42 days - odd. But I think it's because we're not supposed to handle them or have them in contact with any other meds in a container. Jessica says they're generally handled with gloves at the nursing homes.
I have a call into the radiologist to see if we can be scheduled today. They've still not let us know when radiation is supposed to start.
Yesterday Chris and I organized the meds list and she filled the boxes of all of Mom's other drugs for Dad again, so he can just pull out and give her the right ones at the right time. He's finding this really stressful. He's really scared about possible messing it up. But I think it will be fine.
We're expecting a visit from the Southeast Home Healthcare nurse today, and they have ordered more time from the Aid so that Dad will have some time to himself. She sees that he's going to need that.
Odd...we're sitting around talking about chemo and radiation. It doesn't hit me emotionally any more like it did. I think I'm suppressing it while I deal with the logistics. Dad doesn't seem to be able to do that. He continues to be distressed much of the time and continues to have a hard time sleeping.
We are all really grateful for the support of friends and family. We had a casserole from Joyce Atwood Saturday evening, and now are well supplied with chili from Chris. Not having to think about food is a huge blessing. There's just too much else to think about and track. Every day I think I'm going to get my 2010 taxes done and every day ends up filled with Mom's stuff or visitors. The visitors are the best part, although she's still pretty quiet and hard to get talking. Games are working well. She likes to play games and stays involved that way.
We're pretty quiet here, just hanging around, hanging in.
Dad is really scared about doing this, and he made Mom promise to cooperate. The chemo came with one pill per bottle for 42 days - odd. But I think it's because we're not supposed to handle them or have them in contact with any other meds in a container. Jessica says they're generally handled with gloves at the nursing homes.
I have a call into the radiologist to see if we can be scheduled today. They've still not let us know when radiation is supposed to start.
Yesterday Chris and I organized the meds list and she filled the boxes of all of Mom's other drugs for Dad again, so he can just pull out and give her the right ones at the right time. He's finding this really stressful. He's really scared about possible messing it up. But I think it will be fine.
We're expecting a visit from the Southeast Home Healthcare nurse today, and they have ordered more time from the Aid so that Dad will have some time to himself. She sees that he's going to need that.
Odd...we're sitting around talking about chemo and radiation. It doesn't hit me emotionally any more like it did. I think I'm suppressing it while I deal with the logistics. Dad doesn't seem to be able to do that. He continues to be distressed much of the time and continues to have a hard time sleeping.
We are all really grateful for the support of friends and family. We had a casserole from Joyce Atwood Saturday evening, and now are well supplied with chili from Chris. Not having to think about food is a huge blessing. There's just too much else to think about and track. Every day I think I'm going to get my 2010 taxes done and every day ends up filled with Mom's stuff or visitors. The visitors are the best part, although she's still pretty quiet and hard to get talking. Games are working well. She likes to play games and stays involved that way.
We're pretty quiet here, just hanging around, hanging in.
Sunday, September 25, 2011
Blah Day
Mom and Dad went to the Quilt Show at the Caldwell Soakum Festival this morning and all went well with Mom. She didn't even bring Evinrude.
I haven't felt well all day and had to take pain meds, muscle relaxer and stay in bed a while this morning. Frustrating. The weather was very pretty most of the day, although we got a good soaking shower today and last night. The house is still 82 degrees inside, very sickly and oppressive, from the wood-burning heater. Dad is pleased he's keeping Mom nice and warm. I'm finding the 35 degree drop in temperature when going outside with Benji a bit difficult. My muscles just tighten up and spasm.
Chris came down and we worked on organizing Mom's meds for Dad and preparing for them to get even more complicated with the chemo and radiation. She brought groceries and made chili in the crock pot, and had fresh banana muffins made already for us. That woman is a wonder.
Charlie and Susan visited a while, too.
It's good that Mom is showing interest in things, just a little more than she had been lately. She worked a lot of crosswords and cryptograms today, too, something I'd not seen her do since before the surgery.
Thanks again, all, for your support and love through this ordeal.
I haven't felt well all day and had to take pain meds, muscle relaxer and stay in bed a while this morning. Frustrating. The weather was very pretty most of the day, although we got a good soaking shower today and last night. The house is still 82 degrees inside, very sickly and oppressive, from the wood-burning heater. Dad is pleased he's keeping Mom nice and warm. I'm finding the 35 degree drop in temperature when going outside with Benji a bit difficult. My muscles just tighten up and spasm.
Chris came down and we worked on organizing Mom's meds for Dad and preparing for them to get even more complicated with the chemo and radiation. She brought groceries and made chili in the crock pot, and had fresh banana muffins made already for us. That woman is a wonder.
Charlie and Susan visited a while, too.
It's good that Mom is showing interest in things, just a little more than she had been lately. She worked a lot of crosswords and cryptograms today, too, something I'd not seen her do since before the surgery.
Thanks again, all, for your support and love through this ordeal.
Columbus Friday
I went to Columbus Friday for chiropractor, acupuncture and massage appointments, and to have dinner and stay with my friend Katrina.
Here are some photos of Goodale Park where Benny and I stopped for a walk.
The Nationwide Arena District. Nationwide Insurance sponsors it, as well as Nationwide Children's Hospital
where I worked.
Olentangy River Front
"And I'm the one who had the surgery!"
Last evening we played Scrabble with Drew and Jess who were visiting, Mom's first game since pre-tumor I think. She did great and tied for second with Drew. Dad beat us all by 40 points. But at some point he did a bonehead move and Mom cracked, "And I'm the one who had the surgery!"
We all laughed and I joked, "You're going to use that a lot now, aren't you!"
She is still having trouble with taking her turn. She kept getting ahead and sticking words together without realizing it. So by the end we all did it and had a good free-for-all.
She took a short Bad Boy Buggy ride to the mailbox and back to the barn, then walked from the barn up the hill to the back porch and would have gone faster than we would have liked if we had not stopped her to rest.
Her face is drooping on the right more than I have seen in a while.
She and Dad left for the Soakum Festival and quilt show already. She also wants to go to the Barnesville pumpkin fest and get pumpkin donuts. Good signs, That she's taking an interest.
I'm feeling rotten again. Yesterday got really pretty but then rained last night. I woke up stiff and miserable. My massage therapist was not available Friday when I went to Columbus so I had a substitute and it was one of the worst massages I ever had! Also Dads house is literally 90 degrees with his wood burner so the climactic extremes here are messing my body up. So I'm playing lay around and wait for the pain and stiffness to pass today.
Still no news on a start date in LA.
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We all laughed and I joked, "You're going to use that a lot now, aren't you!"
She is still having trouble with taking her turn. She kept getting ahead and sticking words together without realizing it. So by the end we all did it and had a good free-for-all.
She took a short Bad Boy Buggy ride to the mailbox and back to the barn, then walked from the barn up the hill to the back porch and would have gone faster than we would have liked if we had not stopped her to rest.
Her face is drooping on the right more than I have seen in a while.
She and Dad left for the Soakum Festival and quilt show already. She also wants to go to the Barnesville pumpkin fest and get pumpkin donuts. Good signs, That she's taking an interest.
I'm feeling rotten again. Yesterday got really pretty but then rained last night. I woke up stiff and miserable. My massage therapist was not available Friday when I went to Columbus so I had a substitute and it was one of the worst massages I ever had! Also Dads house is literally 90 degrees with his wood burner so the climactic extremes here are messing my body up. So I'm playing lay around and wait for the pain and stiffness to pass today.
Still no news on a start date in LA.
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Monday, September 19, 2011
A-ok
Back at Mom and Dad's. Cousin Lori here visiting.
No news from Akron Children's yet.
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No news from Akron Children's yet.
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Friday, September 16, 2011
Mother at Home Now
Mother is checked out of Autumn care, and at home, for now or until they decide she needs to go back. Dad is taking on her care, for now, since she is so well. Sleeping at home will no doubt improve her even more. They're going to visit Charlie and Susan and have a meal and birthday cake that Amy made.
I'm at Chris's waiting to hear what Akron Children's decides to do. Staying indoors - it's cold (50-60 degrees) and I'm really stiffening up and my fingers are icy and purple. I hate this!
AT&T has still not solved their tower problem that is causing my cell phone to be unusable. I can get Text messages in and out periodically and determined today that I can use my Verizon MiFi to Skype VOIP phone calls, and that seems to be working pretty well. For inbound calls to me, try Skype - the ID is the same as my email. Or Text me and I'll call you. Or leave a voice mail and I'll call back.
I'm at Chris's waiting to hear what Akron Children's decides to do. Staying indoors - it's cold (50-60 degrees) and I'm really stiffening up and my fingers are icy and purple. I hate this!
AT&T has still not solved their tower problem that is causing my cell phone to be unusable. I can get Text messages in and out periodically and determined today that I can use my Verizon MiFi to Skype VOIP phone calls, and that seems to be working pretty well. For inbound calls to me, try Skype - the ID is the same as my email. Or Text me and I'll call you. Or leave a voice mail and I'll call back.
Try to remember - without the hurt a heart is hollow
Try to remember the kind of September
when life was slow and oh, so mellow.
Try to remember the kind of September
when grass was green and grain was yellow.
Try to remember the kind of September
when you were a tender and callow fellow,
Try to remember and if you remember then follow.
Try to remember when life was so tender
that no one wept except the willow.
Try to remember when life was so tender that
dreams were kept beside your pillow.
Try to remember when life was so tender that
love was an ember about to billow.
Try to remember and if you remember then follow.
Deep in December it's nice to remember
although you know the snow will follow.
Deep in December it's nice to remember
without the hurt a heart is hollow.
Deep in December it's nice to remember
the fire of September that made us mellow.
Deep in December our hearts should remember and follow "Try to Remember" is the most famous song from the musical comedy The Fantasticks. Lyrics by Tom Jones, music by Harvey Schmidt.
Wednesday, September 14, 2011
Guernsey County Fair, Another Job Offer, and News of Mom
Yesterday, Chris and I met Dad and Charlie at Autumn to take Mom to the Fair for Seniors day. Autumn was also taking a lot of residents there on their bus.
When we arrived at 10 AM we found her more "lit up" than I have seen her in a few weeks. She looked more lively, with her head up and eyes sparkling, all ready to go.
We rented a wheel chair for her and parked right on the grounds near the quilt barn. We went all through that building's exhibits, slowly.
And their local spinners guild (think spinning wheel, not spinning bikes) had an exhibit set up showing how they use a drum carder to card the sheep's wool (get the knots out and all of the fibers going in the same direction), and spin it into yarn or thread. Several people had their wheels going, and they had one set up for non-members to try spinning for themselves. Well, this is always something I wanted to learn, and I plan to get into this someday when life is more sane and my other hobbies are more under control. So I sat down to try it out. I had my troubles, but in general they said I was very good at it! I now have my own ball of spun yarn to use for mittens or to laugh at later when I learn how to really spin. The others went on to look at the fair while I stayed spinning.
After that I had to get lunch and wait on an interview call with Akron Children's. They called as we were leaving, so I had the interview in the car with the others being quiet for me. Within the hour, Symphony called and said that Akron loved me and want me to work with them.
Then, the haggling began. The Akron project sounds really great, interesting, well-staffed, and likely to succeed under my leadership. The Cedars project is also good and has the advantages I already mentioned. We talked about whether I could do both, possibly split my time between them, with Symphony providing other resources if needed. That thinking and wondering went on all afternoon and through many iterations to get what would work for both clients and me with my health limitations and disinclination to be in snow and ice storms in downtown Akron scraping my car windows and hoping not to get mugged! I hated that at Children's in Columbus. The pain and fear that caused me seems nightmarish, now.
What Symphony finally called me about this morning was working for Akron through October 21st, maybe, then working with Cedars and Akron, with Akron getting 10-20 hours a month of my time remotely after I leave there. The ball is in their court to decide if that can work for them.
Mom's news yesterday was that she is coming home Friday. She and Dad decided that's what they want and they talked to Autumn about getting home care set up several times a week. Dad will drive her to Cambridge for radiation therapy, and they can administer the chemo at home. They're very excited, and Charlie had already started packing up her room. Later, I checked with the Autumn staff about whether she could come back if needed and she can. They often have a short wait list, but it's usually not very many days before they could bring her back.
Drew's sweet Jessica had offered to help take care of Mom, but they're not ready to have her do that yet. Dad thinks he can manage himself now that she is so much better.
When we arrived at 10 AM we found her more "lit up" than I have seen her in a few weeks. She looked more lively, with her head up and eyes sparkling, all ready to go.
We rented a wheel chair for her and parked right on the grounds near the quilt barn. We went all through that building's exhibits, slowly.
And their local spinners guild (think spinning wheel, not spinning bikes) had an exhibit set up showing how they use a drum carder to card the sheep's wool (get the knots out and all of the fibers going in the same direction), and spin it into yarn or thread. Several people had their wheels going, and they had one set up for non-members to try spinning for themselves. Well, this is always something I wanted to learn, and I plan to get into this someday when life is more sane and my other hobbies are more under control. So I sat down to try it out. I had my troubles, but in general they said I was very good at it! I now have my own ball of spun yarn to use for mittens or to laugh at later when I learn how to really spin. The others went on to look at the fair while I stayed spinning.
After that I had to get lunch and wait on an interview call with Akron Children's. They called as we were leaving, so I had the interview in the car with the others being quiet for me. Within the hour, Symphony called and said that Akron loved me and want me to work with them.
Then, the haggling began. The Akron project sounds really great, interesting, well-staffed, and likely to succeed under my leadership. The Cedars project is also good and has the advantages I already mentioned. We talked about whether I could do both, possibly split my time between them, with Symphony providing other resources if needed. That thinking and wondering went on all afternoon and through many iterations to get what would work for both clients and me with my health limitations and disinclination to be in snow and ice storms in downtown Akron scraping my car windows and hoping not to get mugged! I hated that at Children's in Columbus. The pain and fear that caused me seems nightmarish, now.
What Symphony finally called me about this morning was working for Akron through October 21st, maybe, then working with Cedars and Akron, with Akron getting 10-20 hours a month of my time remotely after I leave there. The ball is in their court to decide if that can work for them.
Mom's news yesterday was that she is coming home Friday. She and Dad decided that's what they want and they talked to Autumn about getting home care set up several times a week. Dad will drive her to Cambridge for radiation therapy, and they can administer the chemo at home. They're very excited, and Charlie had already started packing up her room. Later, I checked with the Autumn staff about whether she could come back if needed and she can. They often have a short wait list, but it's usually not very many days before they could bring her back.
Drew's sweet Jessica had offered to help take care of Mom, but they're not ready to have her do that yet. Dad thinks he can manage himself now that she is so much better.
Tuesday, September 13, 2011
Starting Work in Los Angeles the 26th
I expect to begin at Cedars Sinai on Monday Sept. 26th for an initial 6-month contract. I'll be writing Clarity reports and helping to train others.
I'm probably going to book to PHX for the 23rd and then take a shuttle to Tucson. Then fly to LA that Monday or Sunday night, maybe.
It would be a 4-day week at Cedars. Symphony wants me to try to take on Akron and OSU as well if they are part-time, so they can get their foot in those doors and then get more help there and move me out of them if Cedars remains full time. It could be very hectic, but very good and interesting in the short term.
Chris, Charlie and Dad have been very supportive of my going back to work, although they're going to miss me here.
I'm really pleased with this outcome because of the weather, and because I have 2 friends already working at Cedars. Dean, who I shared an office with at TMC is full time at Cedars, and Karen, who was our Training Manager at TMC is there part time, last I knew, supporting a go-live. Both say the hospital is in a nice area. Karen stayed at an apartment or the Beverly Hills Hilton when she worked there. I'm excited, too, because of the cultural life in LA. Rather than commuting back to Tucson, I would have the option of staying the weekend, saving the plane fare for the company. I love art museums and want to get to the Getty on a weekend someday. And the aquariums. And the theater. And to some favorite haunts in Santa Monica that Rod showed me when I visited. Someday.
It's so strange to think of these things while Mom is there at Autumn, sick and unhappy. It seems unconscionable, in a way, to even consider leaving her. On the other hand, what happens with Mom, and when, is going to happen no matter what I do. It's just that I want to be there with her, to comfort her and help her through it. I hope I get that chance again. But she'll know I love her and am with her spiritually. We've had lots of time together to establish that, and she has blessed me many times for it. Poor dear, getting so sick.
I'm probably going to book to PHX for the 23rd and then take a shuttle to Tucson. Then fly to LA that Monday or Sunday night, maybe.
It would be a 4-day week at Cedars. Symphony wants me to try to take on Akron and OSU as well if they are part-time, so they can get their foot in those doors and then get more help there and move me out of them if Cedars remains full time. It could be very hectic, but very good and interesting in the short term.
Chris, Charlie and Dad have been very supportive of my going back to work, although they're going to miss me here.
I'm really pleased with this outcome because of the weather, and because I have 2 friends already working at Cedars. Dean, who I shared an office with at TMC is full time at Cedars, and Karen, who was our Training Manager at TMC is there part time, last I knew, supporting a go-live. Both say the hospital is in a nice area. Karen stayed at an apartment or the Beverly Hills Hilton when she worked there. I'm excited, too, because of the cultural life in LA. Rather than commuting back to Tucson, I would have the option of staying the weekend, saving the plane fare for the company. I love art museums and want to get to the Getty on a weekend someday. And the aquariums. And the theater. And to some favorite haunts in Santa Monica that Rod showed me when I visited. Someday.
It's so strange to think of these things while Mom is there at Autumn, sick and unhappy. It seems unconscionable, in a way, to even consider leaving her. On the other hand, what happens with Mom, and when, is going to happen no matter what I do. It's just that I want to be there with her, to comfort her and help her through it. I hope I get that chance again. But she'll know I love her and am with her spiritually. We've had lots of time together to establish that, and she has blessed me many times for it. Poor dear, getting so sick.
Worse today
Mother is worse today, it seems, intermittently, and she is quite blue.
Visits to Autumn would be very welcome.
She does have her first radiologist appointment today at 6 PM if she goes.
Visits to Autumn would be very welcome.
She does have her first radiologist appointment today at 6 PM if she goes.
Radiologist Appointment Tuesday
Mom, Dad and Charlie went to see the Radiologist in Cambridge. They had a good consultation. Next step is for Mom to go to a hospital in Marysville, the nearest with the equipment to make the head cast she needs to wear during the treatments, which will happen in Cambridge for 10 minutes every day for six weeks.
Monday, September 12, 2011
Honoring her best self in all we do
I made a lot of phone calls for the cause, asking neighbors to visit and support Dad while I'm away. Talked to the hospice nurse about managing Mom's episodes if needed. Left message for the James about the episode, verified with Autumn that Mom's dose of Seroquel has been reduced, and it has. Left message for the church to let them know that Mom's OK now.
All of this while my cell phone coverage blinked on and off, went from "No Service" to "Searching" to one bar and back to "No Service" all day long. I was not getting calls ringing in, I'd just get a notice, eventually, that I had a voice mail message. I assumed it was because of being in this area, since I'd had trouble the last time I was here. I could only get reliable service on Chris's deck, then, in a certain position if I didn't touch or move the phone too much.
I finally looked up Chris's address on the AT&T coverage map and found it should be "good" coverage here. So I called tech support, was on the phone for an hour with them, and may have gotten it resolved. You can imagine I was pretty steamed. I explained to them that I'm in a particular need of reliable service at present and I was not happy. At Dad's, I could walk around his woods and back fields of his dirt-road farm and get perfect service. It just didn't make sense. I'd also received a notice that I was $100 over on my usage this month. I'd already increased my plan once this month. They were slow, but great at finding the problems. One was that my cell is 3G and there is only one 3G tower out of six in the area - the others are all 2G. So I had to turn 3G off. It was also constantly looking for my "personal hot spot" (sounds kinda sexy, don't it?) and I don't have that service, so we had to turn that off. And then they found that my phone was not configured correctly on their computers for use in this area(?), so they fixed that. It will take 24 hours to get through their system and get corrected, and in the meantime, I still don't have service. They reversed the $100+ charge and refunded my entire month of service, to make it up to me, though. We'll see how tomorrow goes.
In the meantime I missed calls from lots of people, the Pastor, my friend Page, and the interviewer on the LA job. I didn't even get the voice mail notices that they'd called until this evening. I'll just have to apologize and try to catch up with everyone tomorrow.
Chris's land line was not a good option because they've already spent too much on phone service recently, and so had I. I didn't want to add to their bill or have to pay them for its use. I've already spent way too much money on this endeavor, with the travel costs, extra warmer clothes, etc. The whole situation really bit and had me boiling for a while.
But, I had a fabulous massage from Chris's therapist and friend here, and got some extraordinary love from Chris's Papillon Sammy. When I got off the phone with AT&T he jumped up on the couch with me and started licking and loving on me really nicely, then cuddled up and napped with me. Benji wasn't sure what to make of it, came and checked it out, then went back to lay in Sammy's bed, which he has sorta rudely taken over and loves. Sammy has been nice about it, after an initial tussle. Benji is much more alpha than Sammy and Sam has had to escape Ben's advances. He actually hid under the couch this evening to get away from Ben's pestering, teasing and playing. What a sweetie. It helped my spirits to have his little pap lovins.
Dad is blue today. Without me there he's feeling the emptiness. Mother is sleepy and tired and not talking much, still. He's worried about her a lot, now. Tomorrow is the radiologist appointment, another worry.
As I said to the Pastor's helper, we are finding our way through this. Mom has been a great example to follow and we're trying to remember to honor her best self in all we do.
All of this while my cell phone coverage blinked on and off, went from "No Service" to "Searching" to one bar and back to "No Service" all day long. I was not getting calls ringing in, I'd just get a notice, eventually, that I had a voice mail message. I assumed it was because of being in this area, since I'd had trouble the last time I was here. I could only get reliable service on Chris's deck, then, in a certain position if I didn't touch or move the phone too much.
I finally looked up Chris's address on the AT&T coverage map and found it should be "good" coverage here. So I called tech support, was on the phone for an hour with them, and may have gotten it resolved. You can imagine I was pretty steamed. I explained to them that I'm in a particular need of reliable service at present and I was not happy. At Dad's, I could walk around his woods and back fields of his dirt-road farm and get perfect service. It just didn't make sense. I'd also received a notice that I was $100 over on my usage this month. I'd already increased my plan once this month. They were slow, but great at finding the problems. One was that my cell is 3G and there is only one 3G tower out of six in the area - the others are all 2G. So I had to turn 3G off. It was also constantly looking for my "personal hot spot" (sounds kinda sexy, don't it?) and I don't have that service, so we had to turn that off. And then they found that my phone was not configured correctly on their computers for use in this area(?), so they fixed that. It will take 24 hours to get through their system and get corrected, and in the meantime, I still don't have service. They reversed the $100+ charge and refunded my entire month of service, to make it up to me, though. We'll see how tomorrow goes.
In the meantime I missed calls from lots of people, the Pastor, my friend Page, and the interviewer on the LA job. I didn't even get the voice mail notices that they'd called until this evening. I'll just have to apologize and try to catch up with everyone tomorrow.
Chris's land line was not a good option because they've already spent too much on phone service recently, and so had I. I didn't want to add to their bill or have to pay them for its use. I've already spent way too much money on this endeavor, with the travel costs, extra warmer clothes, etc. The whole situation really bit and had me boiling for a while.
But, I had a fabulous massage from Chris's therapist and friend here, and got some extraordinary love from Chris's Papillon Sammy. When I got off the phone with AT&T he jumped up on the couch with me and started licking and loving on me really nicely, then cuddled up and napped with me. Benji wasn't sure what to make of it, came and checked it out, then went back to lay in Sammy's bed, which he has sorta rudely taken over and loves. Sammy has been nice about it, after an initial tussle. Benji is much more alpha than Sammy and Sam has had to escape Ben's advances. He actually hid under the couch this evening to get away from Ben's pestering, teasing and playing. What a sweetie. It helped my spirits to have his little pap lovins.
Dad is blue today. Without me there he's feeling the emptiness. Mother is sleepy and tired and not talking much, still. He's worried about her a lot, now. Tomorrow is the radiologist appointment, another worry.
As I said to the Pastor's helper, we are finding our way through this. Mom has been a great example to follow and we're trying to remember to honor her best self in all we do.
And it pours here
In addition to the Akron Children's interview, I now have one at Cedars Sinai in Los Angeles.
And proposal work for OSF in Peoria. Yeah!
And proposal work for OSF in Peoria. Yeah!
And a bit more "local color" from my neighborhood at home
Neighbors found a rattler in their back yard - "5 1/2 feet in length and the circumference of a soda can" - one of the largest the fire department had ever been called on to remove.
Lucky, aren't we to have that service?
Lucky, aren't we to have that service?
Sunday, September 11, 2011
And Monsoon at Home
From a neighbor in my Tucson neighborhood, "We had 2.40 inches of rain in our gauge this morning from last night's storm.
I drove around the neighborhood at the height of it and all the washes were 6" deep. Water was backed up behind the wall at the end of Patawatami to about 8" -- it was flowing over the side wall to the right."
"Washes" are what they call areas that are usually dry riverbeds or dry creek beds most of the year, but become awash during the monsoons. They run from the mountains and all through the neighborhoods. Some are huge concrete things that I wondered about at first. They look totally unnecessary, like real overkill until you see them running high with white caps at the height of a storm or just after.
Tucson...I miss it. I miss my mountains. Especially hearing that we are supposed to get 35 degree temperatures at the end of the week here in Ohio I'm ascared.
- Posted using BlogPress from my iPhone
I drove around the neighborhood at the height of it and all the washes were 6" deep. Water was backed up behind the wall at the end of Patawatami to about 8" -- it was flowing over the side wall to the right."
"Washes" are what they call areas that are usually dry riverbeds or dry creek beds most of the year, but become awash during the monsoons. They run from the mountains and all through the neighborhoods. Some are huge concrete things that I wondered about at first. They look totally unnecessary, like real overkill until you see them running high with white caps at the height of a storm or just after.
Tucson...I miss it. I miss my mountains. Especially hearing that we are supposed to get 35 degree temperatures at the end of the week here in Ohio I'm ascared.
- Posted using BlogPress from my iPhone
Granted Another Picnic
This morning Dad and I took Mom to their church in Old Washington. We were late and arrived during the "greeting everybody" part and the Pastor and lots of others were thrilled to see her.
At the end of the service she stood and sang the last hymn next to me, but after the benediction and a few folks coming over to wish her well, she stopped responding to us. She slumped with her head forward and was very clammy and had just a blank stare. We talked to her a bit and offered orange juice (she had only a small amount of yogurt for breakfast) but she was unable to take it, and then we decided to call the squad.
The sanctuary of their church is upstairs with only a small elevator, so we were at a loss about how to move her or take her on our own. The squad guys found low pulsox, couldn't get a BP or blood by lancet even trying fingers on both hands and her wrists. They moved her dead weight to the end of the pew and then put her on a lift chair and strapped her to it to get her down the little elevator.
Again at the hospital she woke up and started talking within about an hour. They found nothing wrong with her lab tests. So again she walked out of the ER without Evinrude.
Chris had come down and brought an awesome picnic lunch so we all went back to Autumn and sat on the screened porch and had lunch. She was in a pretty good mood and ate well.
So we have been granted another picnic, another day.
Dad is having entirely different feelings about bringing Mom home after today's experience. But no decisions are made.
- Posted using BlogPress from my iPhoney
At the end of the service she stood and sang the last hymn next to me, but after the benediction and a few folks coming over to wish her well, she stopped responding to us. She slumped with her head forward and was very clammy and had just a blank stare. We talked to her a bit and offered orange juice (she had only a small amount of yogurt for breakfast) but she was unable to take it, and then we decided to call the squad.
The sanctuary of their church is upstairs with only a small elevator, so we were at a loss about how to move her or take her on our own. The squad guys found low pulsox, couldn't get a BP or blood by lancet even trying fingers on both hands and her wrists. They moved her dead weight to the end of the pew and then put her on a lift chair and strapped her to it to get her down the little elevator.
Again at the hospital she woke up and started talking within about an hour. They found nothing wrong with her lab tests. So again she walked out of the ER without Evinrude.
Chris had come down and brought an awesome picnic lunch so we all went back to Autumn and sat on the screened porch and had lunch. She was in a pretty good mood and ate well.
So we have been granted another picnic, another day.
Dad is having entirely different feelings about bringing Mom home after today's experience. But no decisions are made.
- Posted using BlogPress from my iPhoney
Friday, September 9, 2011
Hospice
I don't believe Mom knows we're using the term "hospice", but we met with them today, Dad and I, about arranging for her to come home. She knows we met with folks about bringing her home.
Aside from the money issues, it's what she and Dad have decided they want to do. She wants to have her bed in the front room where she has the panorama of windows to the outside. We are going to wait until she has gotten through most of the chemo and radiation, so we know that she stays well enough for us to handle at home, (or maybe so the worst is over first, the surprises about how her body will react?), to give us time to set up, to give us time.... But if we need hospice sooner, we can get them to set us up within a day. And if we decide we want hospice care at Autumn, we can get that there, too. Dad feels it would be easier to have her here than to drive back and forth.
So, Dad and I are working out how we're going to manage her at home, for the entire duration, if possible. The social worker we talked to is looking into solutions to help Dad hear voices on the telephone and answering machine. He can hear it ring, but hearing the voices is the hard part for him. She's also looking into a device to help us keep track of her, so if she wanders too far, we'll get alerted. I'm saying "we" because I'm hoping I'll be able to be here when working remotely.
Mother is scheduled for her first visit to the local Cancer Center for her radiology consultation Tuesday.
Emotionally, it has been a tough day. Neither Dad nor I are sleeping well. It's wearing on us. Somehow we need to change our thinking to see the glass half full, but it's hard right now. Severing a fifty-plus year relationship, even gradually...of course it rips and tears and leaves scars.
Aside from the money issues, it's what she and Dad have decided they want to do. She wants to have her bed in the front room where she has the panorama of windows to the outside. We are going to wait until she has gotten through most of the chemo and radiation, so we know that she stays well enough for us to handle at home, (or maybe so the worst is over first, the surprises about how her body will react?), to give us time to set up, to give us time.... But if we need hospice sooner, we can get them to set us up within a day. And if we decide we want hospice care at Autumn, we can get that there, too. Dad feels it would be easier to have her here than to drive back and forth.
So, Dad and I are working out how we're going to manage her at home, for the entire duration, if possible. The social worker we talked to is looking into solutions to help Dad hear voices on the telephone and answering machine. He can hear it ring, but hearing the voices is the hard part for him. She's also looking into a device to help us keep track of her, so if she wanders too far, we'll get alerted. I'm saying "we" because I'm hoping I'll be able to be here when working remotely.
Mother is scheduled for her first visit to the local Cancer Center for her radiology consultation Tuesday.
Emotionally, it has been a tough day. Neither Dad nor I are sleeping well. It's wearing on us. Somehow we need to change our thinking to see the glass half full, but it's hard right now. Severing a fifty-plus year relationship, even gradually...of course it rips and tears and leaves scars.
Interview Tuesday with Akron Children's Hospital!
Got the call today from my company. Yeah!
Suppose I should mention that I still have a Pinkie the Puppet (page down at this link) at home in my closet from when I broke my leg?
Suppose I should mention that I still have a Pinkie the Puppet (page down at this link) at home in my closet from when I broke my leg?
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