DonnaLee passed away on Thanksgiving surrounded by our families who had gathered at our home for the holiday. I feel like that was DonnaLee's intention.
Thank you everyone for your kind support and please know it made a difference.
My hope is that DonnaLee's open and honest communication on this blog helped others. DonnaLee benefited from an amazing team of doctors, love and support of friends and family as well as advances in medicine to fight cancer. Please share this recipe for success.
DonnaLee lived well and was by no means defined by her illness.
Please follow DonnaLee's example by freely sharing your feelings, helping others and living purposefully.
DonnaLee and I experienced the best from everyone during this difficult time. As a result, my thoughts now turn to all the kindness that surrounds us and how easily expressions of love are shared.
Thank you.
Love,
Doug
Tuesday, November 29, 2016
Sunday, November 20, 2016
Difficult News
Howdy it's Doug posting for DonnaLee.
It was a tough week and DonnaLee was placed in hospice care.
DonnaLee is at home and resting comfortably.
There will be no more doctor visits or tests/scans and the medicine has been cut to a minimum.
The decision became clear after DonnaLee went to sleep on Friday night November 11,and did not get out of bed for the whole weekend. She lost her appetite and did not drink much. There was some confusion and DonnaLee's cognitive abilities slipped. The call to hospice was placed Monday night November 14 and by that Wednesday the hospice nurse and medicine arrived at our home.
I know in my heart that DonnaLee has had enough and is ready to rest. The last number of days have been peaceful and DonnaLee has been kept out of pain.
We remain humbled by everyone's love and support. Please know that DonnaLee's success was possible because of our wonderful family and friends...thank you.
DonnaLee has consistently told me that she no regrets and has felt blessed to be able to travel and have great quality of life through most of the last six years since her diagnosis.
Love to all
It was a tough week and DonnaLee was placed in hospice care.
DonnaLee is at home and resting comfortably.
There will be no more doctor visits or tests/scans and the medicine has been cut to a minimum.
The decision became clear after DonnaLee went to sleep on Friday night November 11,and did not get out of bed for the whole weekend. She lost her appetite and did not drink much. There was some confusion and DonnaLee's cognitive abilities slipped. The call to hospice was placed Monday night November 14 and by that Wednesday the hospice nurse and medicine arrived at our home.
I know in my heart that DonnaLee has had enough and is ready to rest. The last number of days have been peaceful and DonnaLee has been kept out of pain.
We remain humbled by everyone's love and support. Please know that DonnaLee's success was possible because of our wonderful family and friends...thank you.
DonnaLee has consistently told me that she no regrets and has felt blessed to be able to travel and have great quality of life through most of the last six years since her diagnosis.
Love to all
Wednesday, September 28, 2016
Started Opdivo - So far, So Good
Last Monday, started my first infusion of Opdivo. So far all is well and I am not having any side effects.
Also had a MRI on meningeal lower spine. Although I didn't see the full report, Irene says everything looks fine.
Still trying to figure out how to deal with UTI.
That's all for now.
Also had a MRI on meningeal lower spine. Although I didn't see the full report, Irene says everything looks fine.
Still trying to figure out how to deal with UTI.
That's all for now.
Wednesday, September 21, 2016
Changes and Adjustments
Hi all,
Once again it’s been a while since I posted a blog. We’ve had some scans and tests and a lot of
hard conversations that have shifted our focus.
Here’s Doug’s version with a few edits and add-ins from
DonnaLee.
Last week, Sept. 12, we met with Dr. Bonomi and Irene for a
brain scan and regularly scheduled visit.
The brain scan remained favorable, but DonnaLee’s day-to-day health has continued
to deteriorate. This means that the scan
is not telling us the whole story and the current treatment is not working
well. The difficult part of this news
was that there are really not great treatment options to try next. We took this news and agreed to think about
options for a follow-up appointment one week later. We would also speak with a palliative care doctor
regarding pain management, digestive issues and general comfort stuff to help
DonnaLee.
Monday Sept. 19 we met with Dr. Bonomi and Irene and jointly
decided to try a different treatment, immunotherapy. This treatment uses the body’s own defenses
to attack the cancer. Typically,
DonnaLee’s type of cancer with her specific EGFR mutation does not respond as
well to this therapy as some other cancer mutations. However, given six years and several
treatment paths her cancer may have mutated more and be responsive to the
treatment. With a lack of material side
effects and very little downside risk we decided to give immunotherapy a try.
Next week DonnaLee will have a scan of her lower back (in the
meningeal fluid floating through the spine) to provide a base line reading
similar to last week’s brain scan. The
immunotherapy is a one-hour infusion every two weeks. In the meantime, we get an eight week break
from further scans. Interim progress will be judged on tumor markers in the
blood.
The palliative care doctor had many suggestions, but no
concrete solutions for DonnaLee’s more nagging issues. We are entering a period of uncertainty with the
new treatment, exchanging our current slow deterioration for long odds of
success. There is a lot of “wait and see”
and “day at a time.”
On a lighter note, last Saturday’s Lung Run was a great
success with Team DL raising over $5,000.
We enjoyed a beautiful day for our seventh year participating in this
event with about 20 other Team DL runners, walkers and supporters. We could feel a glow of happiness for a day
or two after. We remain thankful for and
humbled by everybody’s love and support.
Wednesday, August 31, 2016
Belated info on last doctors' reports
Once again, I apologize for a late update on recent doctors' visits. No good excuse for the delay, other than general busy-ness (yes, I'm using that word again!) and the fact that there are no real big changes to report.
August 15, I had a CT scan on the lungs that showed stability and even some slight reduction in lesion size and number. Similar reports have come through the past few months for the head and lungs, To me, that seems like a pretty strong argument to just keep doing what I am doing for a while. I've decided against having the radiation treatment that I'd been discussing with Dr. Bonomi and Dr. Marwaha (radiation oncologist).
On Friday, August 12, I had an eye appointment with a new optometrist and although my eyes, seemed worse to me based on those crazy tests they do, he changed my lens prescription and lowed some of the powers of the lens adjustments. All the other tests went well too - no signs of cataracts, macular degeneration or any other nastiness.
On Monday, August 22, I had an appointment with Dr. Angelopolous, my neurologist. It was mostly bringing her up to date on the things that have been going on since we last met in early March (just before the seizure.) She was glad to see the stability in the most recent reports.
The new Liftkar is working out really well and the caregiver confusion seems to have straightened out and it all is working out.
Coming up next on Monday, September 12 is a MRI to the brain and lower spine and the usual blood work and Avastin infusion. Long day!
Hope there won't be any news to report before then. Happy Labor Day!
August 15, I had a CT scan on the lungs that showed stability and even some slight reduction in lesion size and number. Similar reports have come through the past few months for the head and lungs, To me, that seems like a pretty strong argument to just keep doing what I am doing for a while. I've decided against having the radiation treatment that I'd been discussing with Dr. Bonomi and Dr. Marwaha (radiation oncologist).
On Friday, August 12, I had an eye appointment with a new optometrist and although my eyes, seemed worse to me based on those crazy tests they do, he changed my lens prescription and lowed some of the powers of the lens adjustments. All the other tests went well too - no signs of cataracts, macular degeneration or any other nastiness.
On Monday, August 22, I had an appointment with Dr. Angelopolous, my neurologist. It was mostly bringing her up to date on the things that have been going on since we last met in early March (just before the seizure.) She was glad to see the stability in the most recent reports.
The new Liftkar is working out really well and the caregiver confusion seems to have straightened out and it all is working out.
Coming up next on Monday, September 12 is a MRI to the brain and lower spine and the usual blood work and Avastin infusion. Long day!
Hope there won't be any news to report before then. Happy Labor Day!
Wednesday, August 17, 2016
More Good Days than Bad Lately
Hi everyone,
I'm a couple days late on posting my latest medical results and related activities due to technical difficulties and general busy-ness (If you know a better way to spell that word, please let me know.)
The new caregiver is awesome and we are so delighted to have her. Although I learned today that
I will have to share her with other people I recommended her to. I'll have a different caregiver from the same family group two days a week and the one we've been so impressed with over the last couple weeks will still work with us 3 days a week.
The Liftkar that we exchanged the previous one for is a million times better and I've been getting around the house and outside the house more often and with more ease.
The doctor's appointment last Monday at Rush had all good results. Lungs are stable, for the most part. Blood work improved overall and there are no new concerns.
I'm showing some slight improvement in strength and balance with physical therapy.
I'm not seeing myself standing or walking any better, but everyone else - Dr. Bonomi, Irene, Physical Therapist, Caregivers, and Doug all say so.
As always, I thank you for your interest, support and care. This Saturday, August 20 marks 6 years since I received my diagnosis. It has been quite a trip and I so appreciate you being there for me and taking an interest in my ride.
I'm a couple days late on posting my latest medical results and related activities due to technical difficulties and general busy-ness (If you know a better way to spell that word, please let me know.)
The new caregiver is awesome and we are so delighted to have her. Although I learned today that
I will have to share her with other people I recommended her to. I'll have a different caregiver from the same family group two days a week and the one we've been so impressed with over the last couple weeks will still work with us 3 days a week.
The Liftkar that we exchanged the previous one for is a million times better and I've been getting around the house and outside the house more often and with more ease.
The doctor's appointment last Monday at Rush had all good results. Lungs are stable, for the most part. Blood work improved overall and there are no new concerns.
I'm showing some slight improvement in strength and balance with physical therapy.
I'm not seeing myself standing or walking any better, but everyone else - Dr. Bonomi, Irene, Physical Therapist, Caregivers, and Doug all say so.
As always, I thank you for your interest, support and care. This Saturday, August 20 marks 6 years since I received my diagnosis. It has been quite a trip and I so appreciate you being there for me and taking an interest in my ride.
Tuesday, August 2, 2016
Caregivers and Liftchairs
Hi folks,
Just want to thank those of you looking for caregiver contacts on my behalf. We started the interview process on Thursday, July 28, but the first candidate was not a good fit. We interviewed a very experienced and nice mother and her two adult daughters on Saturday, July 30th and they fit the bill very well. One of the three of them will be here for five 12-hour days each week. (In my prior post, I mentioned that we are looking for a new caregiver for at least 2 days and possibly 5 days a week.)
We hired them on the spot.
I really appreciate your help in finding resources.
Second item is that the Liftkar that we purchased a couple weeks ago is going to be replaced by the vendor, 101 Mobility with a different version that has a chair built in instead of attaching to a wheelchair. We think will be easier to use on many levels and hopefully, will allow me greater mobility and access to the outside.
Once again, thanks to everyone reading this blog for their concern and support.
All the best,
DonnaLee
Just want to thank those of you looking for caregiver contacts on my behalf. We started the interview process on Thursday, July 28, but the first candidate was not a good fit. We interviewed a very experienced and nice mother and her two adult daughters on Saturday, July 30th and they fit the bill very well. One of the three of them will be here for five 12-hour days each week. (In my prior post, I mentioned that we are looking for a new caregiver for at least 2 days and possibly 5 days a week.)
We hired them on the spot.
I really appreciate your help in finding resources.
Second item is that the Liftkar that we purchased a couple weeks ago is going to be replaced by the vendor, 101 Mobility with a different version that has a chair built in instead of attaching to a wheelchair. We think will be easier to use on many levels and hopefully, will allow me greater mobility and access to the outside.
Once again, thanks to everyone reading this blog for their concern and support.
All the best,
DonnaLee
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