I sent links to all the cousins, here is what I heard. Sent an email with link to Betsy today.
Dave.
Inboxx
samosbo@aol.com
Aug 5 (2 days ago)
to me
Thanks for the update, David. It's so sad to read, but she has had a great life and has been such a great inspiration to so many. Our thoughts are with all of you. Love to all.
-----Original Message-----
From: David Waddington <dwwaddington@gmail.com>
To: Susan Waddington <srectorwaddington@gmail.com>; Travis Waddington <travis.waddington@gmail.com>; Michael Waddington <mwaddington@gmail.com>; Don Schanche <donschanche@yahoo.com>; Marian <marianwo@att.net>; samosbo <samosbo@aol.com>
Sent: Fri, Aug 3, 2012 10:49 am
Subject: The latest on Polly.
Here's the latest on Mom's cancer. She has not been doing so well lately. I think it's a relief to finally know why. Love to all.
Don and Polly Medical Log. Stardate 2012
Dave.
Reply Forward
Don Schanche donschanche@yahoo.com
Aug 5 (2 days ago)
to Didi, Anne, me
Hey David --
Very sorry to hear of the turn in Aunt Polly's health.
Didi & Anne and I send our love, of course.
We were also thinking of paying a visit. Wanted to know if you think that's OK, and when you think we should plan it.
Yr cuz,
Don
Tuesday, August 7, 2012
Saturday, August 4, 2012
Hospice and more
I understand that at the appointment on Wednesday, Dr Kirk told Mom that the treatments that are available to her are extremely uncomfortable and have very little chance of success.
Mom has chosen quality of life over aggressive treatment.
Mom called me Friday and asked if I could come and be at the apt while a person from Faith Hospice came. So I did.
Faith Hospice was highly recommended by both Kirkpatrick and St. M. That was good.
The hospice rep was an RN named Grace and she spent over an hour talking to us about the process and what to expect. At the end of the hour Mom signed the documents. Grace spent another hour going through the process of getting Mom admitted. Taking vitals, reviewing prescriptions and so forth.
First, what hospice will do and what Mom has to do to be in hospice care.
1. Mom will stay at home.
2. Mom will no longer pursue aggressive treatment for the cancer. That doesn't mean she wont continue to take the meds she takes, just that she won't have a biopsy, chemo or radiation.
3. If a crisis occurs, the first call will be to hospice not 911.
Hospice will provide:
1. A person who answers the phone at the hospice number 24/7. A doctor is on call 24/7.
2. Because the hospice is associated with Presby they can reach Dr. Kirk and can communicate directly with him regarding Mom's care. They are the "eyes for Dr. K."
3. All meds on their formulary the rest will come from CVS as usual.
4. An RN who will Mom's main caregiver (consistency) will come 1-3 times per week as needed. .When she wants someone to help bathing, etc. they will provide someone.
5. Oxygen. That means they will change out Mom's current oxygen with theirs. BTW This happened today, Saturday. They brought a new condenser, a humidifier, more small tanks and a large tank in case the power goes out.
6. A "comfort kit" in the fridge with some very strong drugs that can be administered as directed by a hospice representative. (Like in the middle of the night, Mom needs something. Dad can administer drugs.)
7. A social worker and a chaplain.
8. If there is a crisis, hospice will send licensed vocational nurses for 12 hour shifts. If the crisis passes, then they will back off. If not, they are there.
9. Faith hospice is not for profit, but their expenses are paid by Medicare.
10. There is no set end to hospice. It can go on for as long as the patient does not pursue aggressive treatment.
Mom is very concerned about housekeeping. Grace was not really able to help with suggestions but Susan came by and suggested that the husband of a couple that works for Marilyn needs work for 2-3 days each week. Not only will he do laundry and beds, etc. he is a professional cook and could do the food prep that will allow Mom to continue to cook meals. By the end of the evening, Mom was really leaning in this direction. I hope she will, he sounds perfect.
The goal of hospice is to allow the patient to live life to its fullest (their words). They "take the patient as a whole". Mom said that she wants to be "As comfortable as possible and as pleasant as possible to myself and others."
They do have volunteers who will come and help go through stuff. Organize photos, etc. In their book, they talk about helping the patient cull their most important, favorite photos and make a CD of them. Mom rejected that out of hand, of course, but I think that it might be a good idea.
Hospice provides 13 months of bereavement counseling after death. That might be a good thing for all of us especially Dad.
Grace and a person who works for the apartment witnessed the DNR and I made copies and distributed. (I have one for you, Mary). They need to be readily available to all.
I think that overall Mom feels a weight off. The rest of us may feel a weight on.
Love to all. xxoo
Mom has chosen quality of life over aggressive treatment.
Mom called me Friday and asked if I could come and be at the apt while a person from Faith Hospice came. So I did.
Faith Hospice was highly recommended by both Kirkpatrick and St. M. That was good.
The hospice rep was an RN named Grace and she spent over an hour talking to us about the process and what to expect. At the end of the hour Mom signed the documents. Grace spent another hour going through the process of getting Mom admitted. Taking vitals, reviewing prescriptions and so forth.
First, what hospice will do and what Mom has to do to be in hospice care.
1. Mom will stay at home.
2. Mom will no longer pursue aggressive treatment for the cancer. That doesn't mean she wont continue to take the meds she takes, just that she won't have a biopsy, chemo or radiation.
3. If a crisis occurs, the first call will be to hospice not 911.
Hospice will provide:
1. A person who answers the phone at the hospice number 24/7. A doctor is on call 24/7.
2. Because the hospice is associated with Presby they can reach Dr. Kirk and can communicate directly with him regarding Mom's care. They are the "eyes for Dr. K."
3. All meds on their formulary the rest will come from CVS as usual.
4. An RN who will Mom's main caregiver (consistency) will come 1-3 times per week as needed. .When she wants someone to help bathing, etc. they will provide someone.
5. Oxygen. That means they will change out Mom's current oxygen with theirs. BTW This happened today, Saturday. They brought a new condenser, a humidifier, more small tanks and a large tank in case the power goes out.
6. A "comfort kit" in the fridge with some very strong drugs that can be administered as directed by a hospice representative. (Like in the middle of the night, Mom needs something. Dad can administer drugs.)
7. A social worker and a chaplain.
8. If there is a crisis, hospice will send licensed vocational nurses for 12 hour shifts. If the crisis passes, then they will back off. If not, they are there.
9. Faith hospice is not for profit, but their expenses are paid by Medicare.
10. There is no set end to hospice. It can go on for as long as the patient does not pursue aggressive treatment.
Mom is very concerned about housekeeping. Grace was not really able to help with suggestions but Susan came by and suggested that the husband of a couple that works for Marilyn needs work for 2-3 days each week. Not only will he do laundry and beds, etc. he is a professional cook and could do the food prep that will allow Mom to continue to cook meals. By the end of the evening, Mom was really leaning in this direction. I hope she will, he sounds perfect.
The goal of hospice is to allow the patient to live life to its fullest (their words). They "take the patient as a whole". Mom said that she wants to be "As comfortable as possible and as pleasant as possible to myself and others."
They do have volunteers who will come and help go through stuff. Organize photos, etc. In their book, they talk about helping the patient cull their most important, favorite photos and make a CD of them. Mom rejected that out of hand, of course, but I think that it might be a good idea.
Hospice provides 13 months of bereavement counseling after death. That might be a good thing for all of us especially Dad.
Grace and a person who works for the apartment witnessed the DNR and I made copies and distributed. (I have one for you, Mary). They need to be readily available to all.
I think that overall Mom feels a weight off. The rest of us may feel a weight on.
Love to all. xxoo
Email from Mary, Friday Morning
obsessing
Inbox
x
Inbox
|
10:24 AM (16 hours ago)
 | | ||
| ||||
Please bear with me.
I
feel like I'm obsessing, but since I'm not there to hear everything
that's discussed,I have all these questions. You may have already asked
them and don't know the answer, or no one does. But information makes me
feel better, so I'm asking, in case you do know.
What type of cancer does Mother have? Is it fast growing?
Cancer is often described in stages; what stage is she?
At what point will she need hospice care?
Does she sign up for a hospice now to use when she needs it?
She has another appointment with Dr. TinMan, right? When is it, what's it for and can one of you
go?
Or can one of us go to her next doctor appointment to ask some questions?
Do her St. Michael peeps know about this diagnosis?
Helen: what about just PAX? For the bracelets?
Thursday, August 2, 2012
Thursday conversation with Mother and Daddy
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.
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.
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.
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