@CarpeDom.bsky.social
These msgs are to family and friends only, please do not share on other social media platforms, thank you.
Most recent posts at top of thread.
These msgs are to family and friends only, please do not share on other social media platforms, thank you.
Most recent posts at top of thread.
November 19, 2025 at 1:07 AM
@CarpeDom.bsky.social
These msgs are to family and friends only, please do not share on other social media platforms, thank you.
Most recent posts at top of thread.
These msgs are to family and friends only, please do not share on other social media platforms, thank you.
Most recent posts at top of thread.
It's been a month w/out incidents and Karen is getting a bit stronger each week, exercising almost every day, and a bonus her hair is growing back in a lovely salt & pepper pixie. Tests and Dr. visit next mo.
November 19, 2025 at 1:04 AM
It's been a month w/out incidents and Karen is getting a bit stronger each week, exercising almost every day, and a bonus her hair is growing back in a lovely salt & pepper pixie. Tests and Dr. visit next mo.
Right now she's feeling good w/out symptoms so at least for the next couple of months she can do most activities and my monitoring can relax a bit. Thanks to everyone who's followed, or left a comment or been in touch, we appreciate it.
My knee isn't getting better, may need replacement surgery...
My knee isn't getting better, may need replacement surgery...
October 10, 2025 at 2:09 AM
Right now she's feeling good w/out symptoms so at least for the next couple of months she can do most activities and my monitoring can relax a bit. Thanks to everyone who's followed, or left a comment or been in touch, we appreciate it.
My knee isn't getting better, may need replacement surgery...
My knee isn't getting better, may need replacement surgery...
K had a visit Tues and got provisional good news. Upon review of a final test there's no clear evidence the transplant is failing (at this point). But bc some blood samples were from when she had an infection in Aug, were not 'definitive', so redo them in Dec to better confirm her remission status.
October 10, 2025 at 2:05 AM
K had a visit Tues and got provisional good news. Upon review of a final test there's no clear evidence the transplant is failing (at this point). But bc some blood samples were from when she had an infection in Aug, were not 'definitive', so redo them in Dec to better confirm her remission status.
While in-patient, her doc decided to run some tests early that could tell us if her transplant is progressing or starting to fail, we're still waiting on results so we're on pins & needles to know this important news. Very consequential...
September 16, 2025 at 11:05 PM
While in-patient, her doc decided to run some tests early that could tell us if her transplant is progressing or starting to fail, we're still waiting on results so we're on pins & needles to know this important news. Very consequential...
2.5 months after her transplant Karen spiked a fever and I took her to the ER. They stabilized her until she saw her main Dr who admitted her Aug5th w/ an infection they were having a hard time identifying, but w/ strong IV antibiotics got it under control and discharged her Aug11th. Feeling better!
September 16, 2025 at 10:58 PM
2.5 months after her transplant Karen spiked a fever and I took her to the ER. They stabilized her until she saw her main Dr who admitted her Aug5th w/ an infection they were having a hard time identifying, but w/ strong IV antibiotics got it under control and discharged her Aug11th. Feeling better!
After a month of progress the knee started to get worse, doc said the condyles (ends of the bones) may have been bruised and put me back to square one with no weight bearing (crutches & cane) for a few weeks and start over with PT. I'm about the same as before surgery, so much for less rehab time...
September 16, 2025 at 10:53 PM
After a month of progress the knee started to get worse, doc said the condyles (ends of the bones) may have been bruised and put me back to square one with no weight bearing (crutches & cane) for a few weeks and start over with PT. I'm about the same as before surgery, so much for less rehab time...
After 4 in the late 80's I had my 5th knee surgery on 6/16, it was arthroscopic removing (more) meniscal cartilage & debris, not a joint replacement. The docs said this was a better choice and had the benefit of a much shorter rehab to minimize disruption as Karen's caregiver.
September 16, 2025 at 10:49 PM
After 4 in the late 80's I had my 5th knee surgery on 6/16, it was arthroscopic removing (more) meniscal cartilage & debris, not a joint replacement. The docs said this was a better choice and had the benefit of a much shorter rehab to minimize disruption as Karen's caregiver.
I discovered that many family & friends didn't get the original email about this blog and the info so I'm re-sending. Sorry if you didn't get the original email or get a duplicate msg, I tried an alt email that didn't work with my distribution list format. I'll write new posts to catch up shortly.
August 26, 2025 at 5:45 AM
I discovered that many family & friends didn't get the original email about this blog and the info so I'm re-sending. Sorry if you didn't get the original email or get a duplicate msg, I tried an alt email that didn't work with my distribution list format. I'll write new posts to catch up shortly.
Sorry for the long pause between posts. A couple of things: The first 30+ days were intensive while she recuperated at home and it's been an incremental process since the end of June. I had knee surgery on 6/16 and have been in rehab mode for several extra weeks due to a setback (more later).
August 26, 2025 at 5:18 AM
Sorry for the long pause between posts. A couple of things: The first 30+ days were intensive while she recuperated at home and it's been an incremental process since the end of June. I had knee surgery on 6/16 and have been in rehab mode for several extra weeks due to a setback (more later).
Tomorrow she gets 'deported', but for her that is a good thing, her Hickman catheter port will get removed and she will move into her 30-60 day post transplant phase.
Still a lot of restrictions but better. As of 6/1 she can walk outside with an N95 instead of a full respirator. Not far but outside.
Still a lot of restrictions but better. As of 6/1 she can walk outside with an N95 instead of a full respirator. Not far but outside.
May 28, 2025 at 6:22 AM
Tomorrow she gets 'deported', but for her that is a good thing, her Hickman catheter port will get removed and she will move into her 30-60 day post transplant phase.
Still a lot of restrictions but better. As of 6/1 she can walk outside with an N95 instead of a full respirator. Not far but outside.
Still a lot of restrictions but better. As of 6/1 she can walk outside with an N95 instead of a full respirator. Not far but outside.
K has been recuperating for the last 2 weeks, experiencing a lot of fatigue & some body aches but luckily no severe nausea. Stamina & immune system is increasing incrementally, still more days sleeping and resting then awake & about, but her lab results are heading in the right direction.
May 28, 2025 at 6:18 AM
K has been recuperating for the last 2 weeks, experiencing a lot of fatigue & some body aches but luckily no severe nausea. Stamina & immune system is increasing incrementally, still more days sleeping and resting then awake & about, but her lab results are heading in the right direction.
[Sorry, this post was in draft mode since 5/13]
Karen was discharged yesterday, two days early, and very glad to be home. She needs to stay indoors, windows closed, HEPA filter on, no unnecessary contact/visits, 24/7 monitoring until 5/29.
Karen was discharged yesterday, two days early, and very glad to be home. She needs to stay indoors, windows closed, HEPA filter on, no unnecessary contact/visits, 24/7 monitoring until 5/29.
May 28, 2025 at 6:06 AM
[Sorry, this post was in draft mode since 5/13]
Karen was discharged yesterday, two days early, and very glad to be home. She needs to stay indoors, windows closed, HEPA filter on, no unnecessary contact/visits, 24/7 monitoring until 5/29.
Karen was discharged yesterday, two days early, and very glad to be home. She needs to stay indoors, windows closed, HEPA filter on, no unnecessary contact/visits, 24/7 monitoring until 5/29.
Like most patients, the next few days will be the worst then hopefully her cells will start bonding and blood count rise. She may need an infusion or two but they'll take care of her as needed. She was strong coming in and remains in good spirits, looking forward to coming out the other side of it.
May 4, 2025 at 5:16 PM
Like most patients, the next few days will be the worst then hopefully her cells will start bonding and blood count rise. She may need an infusion or two but they'll take care of her as needed. She was strong coming in and remains in good spirits, looking forward to coming out the other side of it.
Karen successfully had the Tx infusion Tue afternoon, no complications. Side effects first couple of days after were not too bad, but days three & four she can feel them getting a bit worse (as predicted).
May 4, 2025 at 5:11 PM
Karen successfully had the Tx infusion Tue afternoon, no complications. Side effects first couple of days after were not too bad, but days three & four she can feel them getting a bit worse (as predicted).
I'll post an update after the first few days and how she's feeling after the major chemo she'll receive to knock out her entire immune system (and hopefully any last cancer cells). This part of it is the hardest and when she'll feel the worst, so you may not see another update for a week-10 days.
April 21, 2025 at 4:08 AM
I'll post an update after the first few days and how she's feeling after the major chemo she'll receive to knock out her entire immune system (and hopefully any last cancer cells). This part of it is the hardest and when she'll feel the worst, so you may not see another update for a week-10 days.
Hello Family and Friends, K had a successful process of generating and harvesting her T cells for the transplant! The drugs used to stimulate her marrow didn't make her feel very good for several days but she's rebounded and starts her hospital stay on 4/23 till the week of 5/19 if all goes well.
April 21, 2025 at 4:00 AM
Hello Family and Friends, K had a successful process of generating and harvesting her T cells for the transplant! The drugs used to stimulate her marrow didn't make her feel very good for several days but she's rebounded and starts her hospital stay on 4/23 till the week of 5/19 if all goes well.
She'll be in ICU at Stanford for 3-4 wks depending on the pace of her recovery, and w/ no infections or other setbacks. When she comes home she still needs to remain quarantined for 3-5 mos. Visits are limited but cards/ msgs/ calls are welcome as she recuperates. You can post replies here also.
April 7, 2025 at 6:03 AM
She'll be in ICU at Stanford for 3-4 wks depending on the pace of her recovery, and w/ no infections or other setbacks. When she comes home she still needs to remain quarantined for 3-5 mos. Visits are limited but cards/ msgs/ calls are welcome as she recuperates. You can post replies here also.
We were able to do a short trip to see our good friends Frannie & Steven in Newport OR and this week are back to managing tasks prior to K starting Phase Il of her treatment on 4/14-17 to collect the T cells for her transplant and the hospital admission for the procedure on 4/23. It won't be fun.
April 7, 2025 at 5:59 AM
We were able to do a short trip to see our good friends Frannie & Steven in Newport OR and this week are back to managing tasks prior to K starting Phase Il of her treatment on 4/14-17 to collect the T cells for her transplant and the hospital admission for the procedure on 4/23. It won't be fun.
This T-cell type is unpredictable, it could be gone for years or she may relapse as soon as 1 yr, at which time the treatment cycle is repeated. If that happens and a second remission is achieved it'll extend the time to consider clinical trials or any treatment breakthroughs for her type of cancer.
February 15, 2025 at 1:27 AM
This T-cell type is unpredictable, it could be gone for years or she may relapse as soon as 1 yr, at which time the treatment cycle is repeated. If that happens and a second remission is achieved it'll extend the time to consider clinical trials or any treatment breakthroughs for her type of cancer.
This week she did her last treatment of 5mo of chemotherapy to see if it produces a significant remission, tests and biopsy in early March. If it works she'll have a stem cell transplant to restore her immune system for hopefully a cure, or an extended remission period.
February 15, 2025 at 1:22 AM
This week she did her last treatment of 5mo of chemotherapy to see if it produces a significant remission, tests and biopsy in early March. If it works she'll have a stem cell transplant to restore her immune system for hopefully a cure, or an extended remission period.
Last October Karen began treatment for T-cell lymphoma, a rare form of blood cancer w/ a 35-40% cure rate. She's being treated at the Stanford Lymphoma Clinic, under the care of an excellent oncology team that does research on lymphoma.
February 15, 2025 at 1:21 AM
Last October Karen began treatment for T-cell lymphoma, a rare form of blood cancer w/ a 35-40% cure rate. She's being treated at the Stanford Lymphoma Clinic, under the care of an excellent oncology team that does research on lymphoma.