Mother says that Danals is out of town but she spoke with a new priest(ess) at St. Michael who looked into hospices and seconded Kirkpatrick's recommendation of Faith. Mother said I should not let the name put me off. ;-)
They both actually seem more cheerful than they have been. I feel like Mother has been waiting for something definite.
My main concern is to get us down there, and Anna and BB, in the next month or so.
Thanks for keeping me in the loop.
Thursday, August 2, 2012
Cancer Battle Officially Re-engaged
I remember sitting in Dr. Timmerman's office last summer when he looked at us and said "with a tumor this size, that there was a 30-40 % chance that there were cancer cells already working that were not yet evident." The normal treatment path would have included chemotherapy to treat these cells, but that Mom's physical condition did not allow for this rigorous course of action. So it was decided to use the Cyberknife to treat the large tumors in her lung. This meeting was described in the blog entry of Thursday, August 4th of last summer.
So today, the cancer is once again active.
In Mom's words as best I could transcribe from a telephone call, "Kirkpatrick (her oncologist) said the latest PET scan showed more cancer in the lymph nodes surrounding the pulmonary artery. It is active. Cancer cells use more glucose so when the radioactive glucose hits active cancer cells, it lights up like the Fourth of July... I told him I was interested in quality of life not length of life... It could be treated with small doses of chemotherapy which would not have drastic side effects and radiation which would take out her energy and strength.... Kirkpatrick will consult with Timmerman, who is on vacation but who should be back in town any day now.....Need a different way of looking at Hospice. Start an early base line with hospice so they will be better able to help in the end stages."
That's the end of my notes. They were getting ready to leave to go meet Helen and Will for enchiladas at El Fenix. I left work early and met them at the restaurant. Mom and Dad had margaritas. Spirits were good and we rehashed our recent vacation time in Santa Fe.
Conversation became more serious back at their apartment after dinner. Mom said at the beginning, "We all knew this was coming and is no surprise..." Service plans and crematorium contract were out on the dining room table. Lists covered the spare bed in her bedroom. She's been planning this event for a while now.
The first topic is DNR orders. She has a form signed by Dr. Russo. It needs to be witnessed by non-family members, then copies will be distributed. They should be easily and readily accessible to emergency personnel; or anyone who might drive her to a hospital. When DNRs are needed, there is rarely time to look in files. Will got information on bracelets, which are not casually obtained.
DNRs are not casual documents. They do not allow resuscitation. Period. No CPR. No paddles. No breathing tubes. If you're young and in good health, you probably don't want one. According to Wiki, there is a move to change the designation to AND. Allow Natural Death.
As Susan and I found out with Marilyn a few weeks ago, the closer one is to the Great Alternative, the more difficult the choice becomes. As Marilyn said, "I want to live." The DNR can be revoked by the patient at any time. Click here for a copy of the Texas DNR.
Of more immediate concern is domestic help. The Senior Service they have been using fired Mom this week. She wants their services more as domestic help than caregiving. So she has some leads and will begin the search for someone new today. Isabelle is OK every other week for cleaning and Mom does not want ot have to train someone else to clean. She does want someone several times a week to do laundry, change the sheets and chop a few vegetables.
Dr. Kirkpatrick also said it would be a good time to start investigating Hospice so that when the time comes that she needs the palliative care, the relationship would be in place. She was going to talk to Bob Dannals for a recommendation.
I think that's brings things up to date.
So today, the cancer is once again active.
In Mom's words as best I could transcribe from a telephone call, "Kirkpatrick (her oncologist) said the latest PET scan showed more cancer in the lymph nodes surrounding the pulmonary artery. It is active. Cancer cells use more glucose so when the radioactive glucose hits active cancer cells, it lights up like the Fourth of July... I told him I was interested in quality of life not length of life... It could be treated with small doses of chemotherapy which would not have drastic side effects and radiation which would take out her energy and strength.... Kirkpatrick will consult with Timmerman, who is on vacation but who should be back in town any day now.....Need a different way of looking at Hospice. Start an early base line with hospice so they will be better able to help in the end stages."
That's the end of my notes. They were getting ready to leave to go meet Helen and Will for enchiladas at El Fenix. I left work early and met them at the restaurant. Mom and Dad had margaritas. Spirits were good and we rehashed our recent vacation time in Santa Fe.
Conversation became more serious back at their apartment after dinner. Mom said at the beginning, "We all knew this was coming and is no surprise..." Service plans and crematorium contract were out on the dining room table. Lists covered the spare bed in her bedroom. She's been planning this event for a while now.
The first topic is DNR orders. She has a form signed by Dr. Russo. It needs to be witnessed by non-family members, then copies will be distributed. They should be easily and readily accessible to emergency personnel; or anyone who might drive her to a hospital. When DNRs are needed, there is rarely time to look in files. Will got information on bracelets, which are not casually obtained.
DNRs are not casual documents. They do not allow resuscitation. Period. No CPR. No paddles. No breathing tubes. If you're young and in good health, you probably don't want one. According to Wiki, there is a move to change the designation to AND. Allow Natural Death.
As Susan and I found out with Marilyn a few weeks ago, the closer one is to the Great Alternative, the more difficult the choice becomes. As Marilyn said, "I want to live." The DNR can be revoked by the patient at any time. Click here for a copy of the Texas DNR.
Of more immediate concern is domestic help. The Senior Service they have been using fired Mom this week. She wants their services more as domestic help than caregiving. So she has some leads and will begin the search for someone new today. Isabelle is OK every other week for cleaning and Mom does not want ot have to train someone else to clean. She does want someone several times a week to do laundry, change the sheets and chop a few vegetables.
Dr. Kirkpatrick also said it would be a good time to start investigating Hospice so that when the time comes that she needs the palliative care, the relationship would be in place. She was going to talk to Bob Dannals for a recommendation.
I think that's brings things up to date.
Tuesday, July 24, 2012
Hey, it's great to get the pics and read the posts from Santa Fe. Thanks for posting.
Talked to Mother this morning.
Dad was off to see a new neurologist; evidently Dr. Chen has taken a job at the University of Iowa. I had no idea. Mom didn't feel well enough to go with him.
Mother and Daddy went to see Wyatt yesterday and kind of blew the appointment. The PET is scheduled, but when they asked about a cardiologist, Wyatt said he didn't see why she needed a cardiologist and they both forgot to mention the racing pulse symptons, etc. So he gave them a name but did not facilitate an appointment. Mother says she's going to call and see how long it would take to get in; if she has a problem, she'll call Wyatt.
I think we need to, what, circle the wagons, again–try to be more in touch with their appointments. It was hugely helpful for Helen to go see Dr. Tinman last week. For awhile I felt like (or was under the illusion that) Mom and Dad had stabilized to the point where we didn't need to be so closely involved as we were last summer, but
Like, I should have talked to Mother before she went to see Wyatt and made a list of things she needed to address.
Talked to Mother this morning.
Dad was off to see a new neurologist; evidently Dr. Chen has taken a job at the University of Iowa. I had no idea. Mom didn't feel well enough to go with him.
Mother and Daddy went to see Wyatt yesterday and kind of blew the appointment. The PET is scheduled, but when they asked about a cardiologist, Wyatt said he didn't see why she needed a cardiologist and they both forgot to mention the racing pulse symptons, etc. So he gave them a name but did not facilitate an appointment. Mother says she's going to call and see how long it would take to get in; if she has a problem, she'll call Wyatt.
I think we need to, what, circle the wagons, again–try to be more in touch with their appointments. It was hugely helpful for Helen to go see Dr. Tinman last week. For awhile I felt like (or was under the illusion that) Mom and Dad had stabilized to the point where we didn't need to be so closely involved as we were last summer, but
Like, I should have talked to Mother before she went to see Wyatt and made a list of things she needed to address.
Wednesday, July 18, 2012
A new voice, a new day
I went with Mom and Dad to a couple doctor appointments yesterday.
First, we went to Aston Ambulatory for Mom to get a CT scan. SW Med has created a major convenience for patients. The CT appointment is timed so the test results get to the doctor in time for a later appointment the same day. So we did both.
I met Dr. Timmerman, finally. I like him. During the appointment he really seemed to be focused and not pre-occupied with other patients. Rather than jumping to a conclusion, he listened until he really understood the problem.
His comments on the neuroma:
The scans (today and one on June 5th) both show improvement in the lung where the radiation damage occurred last year. They both show a swelling in the area around the Pulmonary Artery. This swelling could be swollen lymph glands.There are some lymph nodes in the area. The scans don't show anything abnormal in the xiphoid region.
His said that this doesn't explain the decline in her health in the last 6 weeks.
He was concerned that the symptoms were not being looked at as a whole. e.g. A lung cancer diagnosis means that all issues are expected to be related to the lungs.
So, to look at all current symptoms:
Abdominal pain/ hurts to breathe deeply
Can't catch her breath even though she is fully oxygenated
Weight loss
Cold all the time
Swelling around the pulmonary artery
Memory loss/confusion - intermittent - this is Polly after all
Severe emphysema
Racing pulse
Erratic blood pressure
These could be the symptoms of congestive heart failure or metastasized lung cancer or lung cancer or.....
SO. He wants to do another full body PET scan do see what else might be going on. Check for tumors throughout her body. He wants her to make an appointment with Wyatt and a Cardiologist. He recommended that Wyatt make the appointments for both the scan and the doctor so that both would be expedited. (We hope).
Mom had an appointment with Secor today (Wednesday). He still says it is a little bundle of nerves not affecting any major organs. Which is basically what Timmerman said.
Mom called Wyatt today and asked him to schedule the PET scan.
She did not ask him to get her a cardiologist appointment because she has an appointment with him on Monday and she wants to ask for the referral then. I suggested that Monday was too long to wait. She felt that a cardiologist couldn't do anything anyway. She agreed with me that the cardiologist may be able to make her more comfortable so she will call Wyatt tomorrow.
She read me her to do list:
Feel better so I'm not grumpy.
First, we went to Aston Ambulatory for Mom to get a CT scan. SW Med has created a major convenience for patients. The CT appointment is timed so the test results get to the doctor in time for a later appointment the same day. So we did both.
I met Dr. Timmerman, finally. I like him. During the appointment he really seemed to be focused and not pre-occupied with other patients. Rather than jumping to a conclusion, he listened until he really understood the problem.
His comments on the neuroma:
- A neuroma should be a lump that you can feel (Mom's is not a lump)
- There is a small bone at the bottom of the sternum called the Xiphoid
- An inflammation of the area is costochondritis.
- My Internet research: it can be inflamed as a result of lung cancer but there are lots of other reasons for an inflammation
- The treatment of costochondritis is to address the pain.
- Dr Timmerman suggested a new Bayer aspirin product (he used it on his dog for arthritis). It is aspirin but it has a different delivery method
The scans (today and one on June 5th) both show improvement in the lung where the radiation damage occurred last year. They both show a swelling in the area around the Pulmonary Artery. This swelling could be swollen lymph glands.There are some lymph nodes in the area. The scans don't show anything abnormal in the xiphoid region.
His said that this doesn't explain the decline in her health in the last 6 weeks.
He was concerned that the symptoms were not being looked at as a whole. e.g. A lung cancer diagnosis means that all issues are expected to be related to the lungs.
So, to look at all current symptoms:
Abdominal pain/ hurts to breathe deeply
Can't catch her breath even though she is fully oxygenated
Weight loss
Cold all the time
Swelling around the pulmonary artery
Memory loss/confusion - intermittent - this is Polly after all
Severe emphysema
Racing pulse
Erratic blood pressure
These could be the symptoms of congestive heart failure or metastasized lung cancer or lung cancer or.....
SO. He wants to do another full body PET scan do see what else might be going on. Check for tumors throughout her body. He wants her to make an appointment with Wyatt and a Cardiologist. He recommended that Wyatt make the appointments for both the scan and the doctor so that both would be expedited. (We hope).
Mom had an appointment with Secor today (Wednesday). He still says it is a little bundle of nerves not affecting any major organs. Which is basically what Timmerman said.
Mom called Wyatt today and asked him to schedule the PET scan.
She did not ask him to get her a cardiologist appointment because she has an appointment with him on Monday and she wants to ask for the referral then. I suggested that Monday was too long to wait. She felt that a cardiologist couldn't do anything anyway. She agreed with me that the cardiologist may be able to make her more comfortable so she will call Wyatt tomorrow.
She read me her to do list:
Feel better so I'm not grumpy.
Wednesday, June 27, 2012
A Quick Report
Well, summer has hit us hard and between the hail and the heat and the birthdays, several weeks have now passed since the the last post and what seemed like imminent crisis has stabilized. Or at least it feels that way.
Tests don't show problems with Mom's heart (if I'm hearing her right.) She does have issues with racing pulse and erratic blood pressure and I think there are suspicions of another tumor. She has another set of scans with Timmerman in a few weeks which will give Kirkpatrick (the oncologist) a comparative set to go on.
So I don't know whether she is feeling slightly better or whether we've all just adjusted to her new condition. I suspect the latter. Travis spent time with them at Mother's Day and then again on Father's Day and said Mom seemed definitely weaker on the second visit.
On the other hand, she did go to church on Sunday and then she and Dad met Susan and myself for Sunday brunch at Crossroads Diner and she seemed just fine!
So summer goes on! The temp is supposed to drop below 100 in a couple of days.
Tests don't show problems with Mom's heart (if I'm hearing her right.) She does have issues with racing pulse and erratic blood pressure and I think there are suspicions of another tumor. She has another set of scans with Timmerman in a few weeks which will give Kirkpatrick (the oncologist) a comparative set to go on.
So I don't know whether she is feeling slightly better or whether we've all just adjusted to her new condition. I suspect the latter. Travis spent time with them at Mother's Day and then again on Father's Day and said Mom seemed definitely weaker on the second visit.
On the other hand, she did go to church on Sunday and then she and Dad met Susan and myself for Sunday brunch at Crossroads Diner and she seemed just fine!
So summer goes on! The temp is supposed to drop below 100 in a couple of days.
Monday, June 11, 2012
On Don's 87th
The signature opening event of summer is Dad's birthday, June 10th. Usually everyone's still in town and summer has a bit of fresh green from whatever spring rains we've gotten.
After the events of last summer, they start seeming a little more special.
So the Dallas contingent gathered last night for another great evening around a dining room table. Will posted some great pics on Facebook, for those so inclined!
Mom insisted on parking on the street and walking UP the driveway and she made it! Only a brief stop to catch her breath and the top. She did really well. Halfway through dinner she discovered that she had never even turned on her oxygen tank, so yeah she did REALLY well.
I'm surprised at how long it's been since I posted. Probably should have put up some status reports, so I'll recap.
Dad has recovered from his heart issues really well. Most of the symptoms that were bothering him have eased. He's walking well without a cane, he's ushering at church and driving himself to his various activities that keep him busy. He's on medications to keep the heart stable and to control the tremors of the Parkinson's. As long as he stays on familiar paths doing familiar activities he does really well. He gets flustered very quickly in unfamiliar situations. I went with them to a new restaurant and he seemed to have difficulty picking up the new menu and the slightly different ordering method in the new surroundings.
Mom's cancer treatments went better than anyone expected. But things seem to be getting progressively more difficult for her. Several issues.
One is that she has a difficult time catching her breath. Her oxygenation is good, but she's always out of breath. She saw Dr. Russo and told me that there was something funny about her heart rate. (Which would explain the out of breath thing.) They've performed several tests and have yet to uncover a specific problem. Or she won't tell me if they have.
The long term issue (since the cancer treatments) has been abdominal pain, which has caused her to lose appetite and reduce her already minimal appetite. It seems like it took months, but she finally got a diagnosis of neuroma, which is caused by thickening or mass in the nerve tissue in the abdominal wall. The pain is usually not constant, but comes and goes and varies in intensity. The preferred treatment is with painkillers, primarily a a big lidocaine patch applied externally. It gives mixed results. Better results have been obtained by canned dietary supplements, so now she's getting sufficient nutrition. The combination is a slight improvement, which should help her eat better. (Hopefully improvements will spiral out of control, but probably not.) It is NOT related to digestive issues, although pain can cause nausea.
Between the pains and the shortness of breath, it's been a tough few weeks for her. She has not been going to church on Sundays and sending Dad out by himself on the grocery runs. So, yeah. She's not feeling good.
I am constantly aware of the fragility of their world.
After the events of last summer, they start seeming a little more special.
So the Dallas contingent gathered last night for another great evening around a dining room table. Will posted some great pics on Facebook, for those so inclined!
Mom insisted on parking on the street and walking UP the driveway and she made it! Only a brief stop to catch her breath and the top. She did really well. Halfway through dinner she discovered that she had never even turned on her oxygen tank, so yeah she did REALLY well.
I'm surprised at how long it's been since I posted. Probably should have put up some status reports, so I'll recap.
Dad has recovered from his heart issues really well. Most of the symptoms that were bothering him have eased. He's walking well without a cane, he's ushering at church and driving himself to his various activities that keep him busy. He's on medications to keep the heart stable and to control the tremors of the Parkinson's. As long as he stays on familiar paths doing familiar activities he does really well. He gets flustered very quickly in unfamiliar situations. I went with them to a new restaurant and he seemed to have difficulty picking up the new menu and the slightly different ordering method in the new surroundings.
Mom's cancer treatments went better than anyone expected. But things seem to be getting progressively more difficult for her. Several issues.
One is that she has a difficult time catching her breath. Her oxygenation is good, but she's always out of breath. She saw Dr. Russo and told me that there was something funny about her heart rate. (Which would explain the out of breath thing.) They've performed several tests and have yet to uncover a specific problem. Or she won't tell me if they have.
The long term issue (since the cancer treatments) has been abdominal pain, which has caused her to lose appetite and reduce her already minimal appetite. It seems like it took months, but she finally got a diagnosis of neuroma, which is caused by thickening or mass in the nerve tissue in the abdominal wall. The pain is usually not constant, but comes and goes and varies in intensity. The preferred treatment is with painkillers, primarily a a big lidocaine patch applied externally. It gives mixed results. Better results have been obtained by canned dietary supplements, so now she's getting sufficient nutrition. The combination is a slight improvement, which should help her eat better. (Hopefully improvements will spiral out of control, but probably not.) It is NOT related to digestive issues, although pain can cause nausea.
Between the pains and the shortness of breath, it's been a tough few weeks for her. She has not been going to church on Sundays and sending Dad out by himself on the grocery runs. So, yeah. She's not feeling good.
I am constantly aware of the fragility of their world.
Saturday, October 1, 2011
After an Even Longer Interval
Talked to Mom and Dad this morning.
Dad answered. Sounded pathetic. Evidently he still feels nauseated and terrible after taking his morning meds. Musselman took him off the Amiodarone Wednesday (that was his arrhythmia medication and the suspected cause of his 'morning sickness.') Hasn't helped yet. It's a major cause of anger and depression. Sunday he was proclaiming with an angry edge to his voice that I'm not used to hearing that "If he doesn't take me off that damned drug I'll probably just stop taking it on my own!" Strong words from the D-Don man.
Other than that, he's doing fine. Aggressively doing his rehab work, walking and getting around with more strength.
Mom finally started taking her neuropathy medicine. I think it's starting to help. She saw the oncologist Kirkpatrick this week. I would like to have gone, but it was a hell day at the store and there was no way I could get off in the afternoon. I don't think there was much for him to say. He would like to do a scan and check on the tumor's progress (or lack of it), but Timmerman's group has scheduled it for a little later and he's going to respect their scheduling. Mom would have definitely liked him to do a scan as well. She's anxious to hear that the tumor is shrinking. Or dying. Or whatever is does once it's been zapped! She sounds stronger!
Will see them at some point this weekend. That's all for now!
Dad answered. Sounded pathetic. Evidently he still feels nauseated and terrible after taking his morning meds. Musselman took him off the Amiodarone Wednesday (that was his arrhythmia medication and the suspected cause of his 'morning sickness.') Hasn't helped yet. It's a major cause of anger and depression. Sunday he was proclaiming with an angry edge to his voice that I'm not used to hearing that "If he doesn't take me off that damned drug I'll probably just stop taking it on my own!" Strong words from the D-Don man.
Other than that, he's doing fine. Aggressively doing his rehab work, walking and getting around with more strength.
Mom finally started taking her neuropathy medicine. I think it's starting to help. She saw the oncologist Kirkpatrick this week. I would like to have gone, but it was a hell day at the store and there was no way I could get off in the afternoon. I don't think there was much for him to say. He would like to do a scan and check on the tumor's progress (or lack of it), but Timmerman's group has scheduled it for a little later and he's going to respect their scheduling. Mom would have definitely liked him to do a scan as well. She's anxious to hear that the tumor is shrinking. Or dying. Or whatever is does once it's been zapped! She sounds stronger!
Will see them at some point this weekend. That's all for now!
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