06/21/07

The family and friends of Chiori Santiago would like you to join us in a memorial service to celebrate Chiori's life.

Chiori left our world on April 14, 2007. In keeping with some of the things she loved and the richness of her life, we will honor Chiori through stories, creative activities, music and dance.

Please bring food and drink to share. You may also bring offerings of fruit and flowers for the altar,and photographs to incorporate in a collage.

Traditional "koden" will be accepted to support the family.

Saturday, July 14 from 3-8 p.m. in the Garden of the Oakland Museum of California 10th & Oak St., one block from Lake Merritt BART

Through her life and death Chiori showed us how to live creatively, with compassion, humor, intelligence and courage.

Please feel free to distribute this announcement.

Chiori's vibrant spirit continues to inspire us and will remain forever alive in our hearts!

05/22/07

My friend Rebecca dedicated her cancer walk to Chiori.

(Picture right)

4/20/07

The family will hold a small private memorial the weekend of April 21st. A public memorial is being planned for this summer with a tentative date of July 14th.

04/14/07

Dear Friends and Family,

This is a difficult message to write. I am sorry that I am not able to contact all of you individually. Chiori Santiago passed away early this morning due to complications related to her cancer. She was initially admitted to Alta Bates early in the week with fluid in her lungs. It seemed that she would be ready to come home on Thursday but the ICU decided to keep her for observation for another day. Thursday night her condition worsened and she was unable to recover. Chiori was able to express her desire to have her family with her so that she could pass on in peace surrounded by her family. A few hours before she passed a small group of her friends were able to come in and say goodbye. Chiori was conscious and alert. She requested that life support measures be turned off. At that point, surrounded by her immediate family, she was given comfort care and passed a few hours later at peace and without pain.

I know that this news is difficult for all of us. Please remember Chiori's life and all of the ways she touched our hearts. She was an amazing and inspirational woman. She is responsible for everything I have accomplished in my life. Her example made me the person I am today and she had an effect on everyone who knew her. She will be missed by all of us.

Chiori's ashes will be scattered in a private ceremony by her family. Dates and details of her public memorial will be sent out as soon as they are available.

Thank you for all of the love and support you have given her and our family,

-Roberto Santiago

01/28/07

Hi Everyone,

Chiori had her follow-up appointment with her oncologist, Dr. Irwin, for the results of the latest CT scan a couple of weeks ago. Dr. Irwin described the results as "encouraging": many of the tumor sites have shrunk, and none have gotten bigger. So the therapy with Sutent and Avastin will continue.

01/02/07

Much has happened since the last update. In early December, Chiori had a CT scan and a bone scan. The tests revealed that the tumors in the left lung has increased and additional small tumors have appeared in the right lung
and liver. Cancer also has metastasized in three ribs. To ease the pain in the bone, Chiori is receiving small daily doses of radiation, which will continue until the end of January. This is not a painful procedure and the dose is not very toxic, meaning she gets to keep her hair! She also uses a narcotic patch, Fentanyl, which provides mild but constant relief.

In addition, IV doses of Avastin have been added every 2 weeks. The Avastin supplements the Sutent pill she's been taking the past couple of months. Basically, these substances starve the tumors of their blood supply,
hopefully causing them to shrink or stop growing.

Chiori continues to visit the Charlotte Maxwell Center in Oakland weekly for acupuncture, reflexology and massage treatments, a real blessing. With all the these treatments, her energy level is better and she has been working on a few projects, getting out for visits to museums and to see
friends. She enjoyed visits from her brother, Terry, and cousin, Ryu, from Holland; cousin Rea from New York, and celebrated a wonderful family holiday
with Roberto and his girlfriend Jayne from Maryland.

Chiori is looking forward to the new year and hopes to spend at least part of each week back in the office.

Thanks for your continued caring!

11/18/06

Dear Friends,

Hello and apologies for the long delay between updates. The lag is mostly due to the fact that there is not much new information to report. Chiori continues to have good days and bad days, her diet and nutrition situation is a work in progress. The recent development is that Chiori will have the stent (a small tube that was during her original surgery inserted to promote draining) in her kidney removed soon and may be switching from the TPN (IV nutritional supplement) to a feeding tube.

The auction event in October was a huge success. Endless thanks go out to everyone who came, everyone who donated items, and to all those invloved in planning and running the event. It was no small task to put on such a wonderful evening. Chiori felt blessed to have so many people come out and show so much love. Photos from the event can be found at:

http://www.pbase.com/bobhsiangphoto/chiori_benefit

Thank you all for keeping Chioir in your thoughts and prayers.

10/11/06

On Friday, Oct.6, Chiori saw the oncologist to hear results of a biopsy earlier that week. The biopsy confirmed that cancer has spread from the kidney to the lung. Doctors hope to begin treatment soon with an oral medication call Sutent, which is the least toxic course of treatment for someone who's had kidney cancer. Despite this setback, Chiori continues to recover from the surgery and feels a little stronger each day.

We will keep you posted. Thanks for all the caring.

08/29/06

Thanks to Sandina for this update. If you are interested please note updates in the "How You Can Help" section of this site.

Chiori & Julie went to the Comprehensive Cancer Care Center at Alta Bates. They met the oncologist, Dr. Irwin, who says Chiori's on the right path to recovery, and doing OK considering she just had major surgery. He will see her on a weekly basis. Next appt. is Wed. Sept. 6th at 3:45.

Dr. Irwin said Chiori has RCC - Renal Cell Carcinoma, the most common form of kidney cancer (80%). Chiori's is considered Stage 3 cancer as it was present in the kidney and renal vein, which means it has the potential for spreading. We won't know more until mid-Sept. when Chiori
will have a pet-scan and a second pet-scan in Dec. or Jan. to see if there is any sign of cancer in her system. Dr. Irwin said Chiori will not notice any more symptoms in the coming months; that indicators would only show up on a pet-scan.

08/16/06

Hello All,

Good news! Chiori has finally made it home! She still has a nutritional IV because she is not eating much and she is still in some pain as a result of her surgery. Also, Chiori does not have a full oncology report back yet. This means that while it looks like the cancer was addressed during surgery we won't know for sure until later.

Chiori is still quite fatigued as her body recovers from the surgery but she is up and about some. While she is feeling better she does require frequent periods of rest and too many visitors or phone calls might be a bit overwhelming. Right now the best way to contact her would be by sending an email to her regular email address. That way she can respond while she is up and won't worry about seeming rude if she is unable to talk on the phone when people call. That said if you would like to visit please email her and set up a time as I am sure she would love to see you.

(Gee I hope I don't seem rude saying all this. I don't want to seem like I'm limiting her contact, but I do want to make sure she's getting her rest. And you know Chiori, she'd never admit she was too tired to hang out with a friend.)

Thank you all for your love and support.

08/08/06

No News is Good News:

Hello All,

This is just a quick update on Chiori's condition. Some of you have been anxious because there has not been an update in a week or so. Luckily that is bacause
there is nothing major to report at this time. Chiori is still at Alta Bates and will likely be there for a few more days. There have been some minor lingering effects from the surgery and the medical staff elected to keep her for a few more days. Chiori should be returning home sometime this week and we will keep you posted when more details become available.

Thank you all for your kind emails, if you wish to send cards or personal correspondence please use Chiori's home mailing address.

07/30/06

This is a note from Janet, Chiori's friend and a nurse by trade

Hi Everyone!

I didn't end up going to see Chiori last night, on the advice of a # of people, but went this morning, as I had promised her. As I walked in, the first thing I saw were little hands moving at the tray table, and she was awake, alert, cheerful and cute. Her pain is under control but the morphine makes her take little cat-naps. I did stay for some time but left to go to the lounge a couple of times, saying I brought paperwork, which was true, to let her doze. As Isidra said, she said she would like visitors, except Iggy/family, to wait until Monday or later to visit.

All I can recommend is that visitors ask her frequently if she is tired and needs a break. She wanted me to stay to help get her up to a chair, but I took off earlier as that got delayed. She enjoyed a foot massage and just general conversation, (such as what good sons she has!).

I think the surgery went as well as can possibly be expected. She's in ICU really just for a higher level of monitoring. Her vital signs were fine (I snooped), urine output looked good and there's no swelling in the limbs or anything, dialysis apparently is not necessary at this time, preliminary results are that there is no tumor in the lymph node sample. She was producing urine both out the normal way and out the nephrostomy tube. I couldn't get a straight answer from the nurse as to why they left in the nephrostomy tube in her back, but my guess is that they didn't want to "burn their bridge" and take out the nephrostomy until they are sure this ureter stent is good.

How to be helpful as visitors: give Chiori an easy way out to cut the visit short. Lots of thank-yous to staff. Bringing in some See's or whatever to the nursing station is always good.

I think it's time for us all to be thankful and relieved, and that the present task is getting her strong again.

Love, Janet

07/29/06
Thank you for the update Nadja:

Hi All,
I just left the hospital and talked to many of you already, but just to recap:

Chiori is fine, she's resting in ICU. When I left only Ignacio was with her. I was told that she was really pretty out of it. She was not having vistor tonight and if people want to visit tomorrow you should probably call ahead to see how she's doing and even then maybe only one at a time. You should probably call each other also to check to see
who's going when. We don't think it's necessary to go to the hospital and just sit in the waiting room now.

Okay, that said, here are the details from Dr. Wieder, maybe the nicest doctor ever! He spent almost an hour with us explaining and answering questions. After such a long surgery he was wiped out. He said the cancer was contained in the kidney and it didn't look like it had spread, though he took some lymph node samples and sent them to pathology to be tested. Those tests will be back in a few days. The Stone in the other kidney was removed in 5 minutes! She has a lot of healing to do and will be very groggy for the next few days. She could be in the hospital anywhere from 7-10 days. As far as dialysis, that is also going to be played by ear (not a great metaphor...). It will depend on the test results that they run over the next few days to see how the remaining kidney is functioning (here's where the nephrologist takes over). It could be for a short time intermittently or not at all, it's up in the air. Taking a longer look at her healing process, she will be fairly fatigued for the next few weeks, though getting up in a few days. Her energy should be spent sleeping and healing. In 2-3 weeks she could be 80% better. The doctor said it is possible that if someone is feeling so much better he would say it's okay to go back to work in 6 weeks. Knowing our Chiori, that's totally possible!

As far as diet, they are going to see how everything is functioning and what medications she might need and then decide what the best course is. There was nothing definitive said about being on the renal diet or not.

It's a waiting game right now. So, we should reserve our energies for caring for her when she's home. Keep her in your thoughts and visualize her healing from the inside out.

Okay, that's it from here. See you all when I get back.

much love,
Nadja

07/24/06 An Update and a Request

-Chiori’s surgery has been moved to the morning of Friday July 28 2006.

- Chiori has been diagnosed with cancer, however the prognosis at this point is positive. Of course we are all concerned about her surgery and recovery and we want to show our concern. That said we also want to remain positive. Chiori has been brave and even cheerful in the face of adversity. Please, continue to call and write with your good wishes, but please try to remain positive and help lift Chiori’s spirits in the coming months.

"There Is Nothing Either Good Or Bad, Hard Or Easy, It's How We Choose To Think That Makes It So"

~William Shakespeare~

07/23/06

Surgery has been switched to Friday 07/28/06.

07/19/06

Hello all,

What follows is the first installment of what should be a fairly regular update on Chiori's condition. This first installment is mostly drawn from our meeting with the doctor this morning. This meeting was a second-ish opinion since it comes from a doctor in the same medical group as the primary urologist. Below you will find a recap of what we know so far as well as some things to expect post-op.

What we know:

-Right Kidney has a large stone in the proximal uretur (near kidney) 1 x 2 cm
-It has been there a long time
-There has been loss of kidney over time
-While in the hospital they did test for kidney function on that side
-This is an imperfect test but shows 36% function but the actual number may be lower
-Chiori has chronic renal insufficiency

-Left kidney has large tumor
-Renal cell/kidney origin tumor
-Only option is removal before the cancer spreads
-Chemo/radiation therapy does not work with this type of cancer

-Removal is complicated due to thrombus which increases risk of breakage or spread of cancer.
-Saving any part of kidney is not likely though it would be nice
-Adrenal gland will be removed but is not a problem

-Hopefully the stone side can be addressed at the same time.
-This means a “big” incision.

-The big question:
-How much function will the right kidney have?
-Right after surgery it may be fine, may need temporary dialysis, or may need permanent dialysis.
-What is the long-term function going to look like.
-It is not likely that right kidney function will hold steady over time
-Kidney function will need to be monitored for life
-Transplant may be an option later in life
-Generally a two-five year wait after cancer is treated

What we learned today:

-What is the stage/grade of the cancer?
-Generally stage three is indicated by vein involvement. Currently we do not know if the thrombus (mass blocking the
renal vein) is a blood clot or part of the tumor.

-What is the prognosis in terms of this kind/stage of cancer?

-Hard to say right now.
-We’ll know after the surgery when the biopsy is done. (~1 week)
-The diagnosis is different if the thrombus is a clot or a tumor.
-We need to see the lymph nodes
-If the lymph nodes are affected then oncology will be a
likely option.
-Low level of kidney function may preclude immunotherapy

-Type of surgery
-Radical nafrectomy: removal of the kidney and renal vein
-Surgery should take ~5 hours
-If an attempt is made to save part of the kidney surgery will take longer.

-What time is surgery?
-8:30am July 27
-Arrive at hospital ~7:00

-What is the recovery period?
-~1week in the hospital post-op

-What to expect at home
-4-6 weeks of no lifting or straining.
-80-90% energy for the next 12 months
-Will get tired faster
-“Deconditioning” of muscles and behavior to adjust for new energy levels
-No more out there in the field planting 5 gallon trees (at least for a while).

-Special diet?
-Chiori will be on renal diet after surgery
-Information on the renal diet will be available on this website under the “Diet Info” link on the left hand menu bar.


There is an in home nurse-advocate that is available after surgery. This service is a part of Chiori's insurance and incurs no additional expense.

-Nurse advocate
-Helps coordinate care
-Discusses options
-Answers questions
-Will try to find answers to questions
-Will research other resources
-Does not deal with benefits
-Should be in contact a minimum of once per week
-Inform nurse of any change in plans, routine, or desires regarding care

-Nurse’s group will be reviewing file to look for things that may slip through the cracks in terms of care.
Thank you for you care and concern

07/19/06

As of now Chiori's surgery is scheduled for July 27th. We do not yet know how long she will be in the hospital or what exactly to expect for her recovery period. We will meet with the Doctor soon to find out more details. Check back later for more info.

At the Revlon Cancer walk/run for women in NYC

The family will hold a small private memorial the weekend of April 21st. A public memorial is being planned for this summer with a tentative date of July 14th.

Click here to email this site or subscribe to the newsletter.