March 29

Today at 12:25 am, after 11 years of fighting cancer, my lovely,
loving and beloved wife of 23 years, Tia, passed away. She died as she
had lived - with dignity and grace and on her own time schedule. And,
as in life, she died on her own terms - at home surrounded by her 4
daughters, family and friends.

She woke for a little while on Monday and we arm wrestled, as we had
in the past. In all the years we've been together I never won.
Usually it was because she was stronger, but other times I just let
her win. She still had strength and won the first bout. She then
grabbed my hand again for a re-match and pulled my arm so I would win.
She then took her fingers and with a significant amount of effort,
she signaled OK. I could read everything in to that gesture or
nothing, I choose to read everything. We had a unique relationship,
unconventional for sure but it was a true love story.

She was an amazing person and everyone she touched is the better
person for meeting her. We will all miss her and we will be sad for
her not being in our lives, but at the same time we need to honor her
memory and her struggle to stay with us over the last 11 years. She
was determined to see her daughters become young women and no mother
could have been prouder of her children then Tia was of Zoe, Rae, Ede
and Ava. No matter how much she loved me, her family or friends (or
even her cats), we all took a backseat by a far margin to her love for
our daughters.

Over the last few months, her family flew in from all over the country
and they were a source of not only comfort but strength to her. She
appreciated each and every visit and always asked me after her
siblings had left about how soon they could return, as she began to
miss them even as they were driving away.

We were fortunate to have my brother and his family so close by. Tia
loved the fact that every Tuesday and Thursday our "fifth child" would
be in the house for dinner and homework and on our equivalent to
Shabbat dinner (lobsterfest Friday) we had the added benefit of Kate
coming over. In addition, I don't know what I would have done without
my brother to lean on during the last year.

And then there are her friends. Too many to count and their love was
limitless. She loved, admired, respected and just had a good time
with her girlfriends. Whether they were her childhood friends from
back east, her girls from the hood, her village school moms, her
golden door friends, her phase one friends, her photo shop friends or
just her "shop" friends, she loved you all. She had more categories of
friends than I have friends. I would come home from work and
invariably some girlfriend was over visiting. They could be in the
kitchen cooking, in the gym stretching, in the media room for movie
afternoons, in her office laying out some photo design, in the back
yard just enjoying the ocean or when she got sick, even laying on my
side of the bed planning phase one events. Our home will be empty
without her presence.

Tia had two basic speeds/moods during her life - happy and pissed off.
She was rarely just sad. If something upset her, she got angry and
did something about it. She wasn't one to just sit back and let the
sadness wallow over her. She was a woman of action.

More often than not, though, she was happy. And her happiness was
infectious. It is with this thought in mind that her family will
remember her.

We are having a private family service this afternoon.

We will be sitting Shiva at 201 Alma Real Drive, Pacific Palisades on
Thursday and Friday evening from 5 to 8pm with Kaddish being said each
night at 7pm.

As most of you know, on top of everything else, Tia was heavily
involved in Phase One. This is a wonderful organization and through
their good efforts, one day we might have a cure for the cancer that
took Tia from us at much too young an age. In lieu of food or
flowers, Tia has requested that donations be made to Phase One at
www.phaseonefoundation.org or call Lissa Zanville at 310-458-7715 or
email her at lzanville@aol.com. (Truth be told, Tia also loved flowers
so she was waffling on the "in lieu of" and probably was going to have
it replaced with a request of "in addition to flowers". )

The world was better off for knowing Tia.

I love you so much

Jess

Sent from my iPad

Monday Morning

Tia is resting and in no pain. She had a restless night (was trying to take off covers then pull up the covers) but is now sleeping.

She is so strong (which at this point is both a blessing and a curse). Thirty minutes ago she awoke and announced she had to go to the bathroom. Without waiting for anyone, she started to get up. Luckily, Zoe was just getting up and Tia walked (with help from Zoe and me) to the bathroom. I was shocked that she had the strength to get out of bed but she is so proud and dignified that she wouldn't allow for anything other than walking to the bathroom.

She is an amazing woman.
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Friday night

Tia is resting and is in no pain. She slept most of the day but did have some great moments with her daughters and friends. The girls filmed a video of their mother talking to them and it was wonderful. She is an amazing woman and every moment is special.

The highlight of the day was a remark made by Tia during the girl's filming. She was just telling each girl how much she loved them when Ink (our cat) jumped on her bed. Tia loves her two dogs, really loved Velvet and Blizzard (her two Cornish Rex) and barely tolerates Ink. So, after she said something to each girl she started to say something to Ink and we all said something like "Mom, you really don't like Ink" and she responded with perfect timing, "yeah, I know, but she was here and I felt obligated to say something" and then she smiled and we all laughed.

Thank you all for the warm wishes, the flowers and food. We are surrounded with wonderful family and great friends. Thank you all

Sent from my iPad

Wednesday. March 21

Tia has taken a serious turn for the worse. We went to the hospital today for another PETSCAN and it appears that her lymphoma is back. At this point, there is no alot of good reasons to subject her to more poking and prodding.

She sleeps most of the day and is having a difficult time speaking but she is at home and comfortable at the moment. Zoe and Rae are on their way home. Also, Tia's sisters and brothers are coming so she is surrounded by family and loved ones.

She is a tremendous fighter

Please say a prayer for her.

Sent from my iPad

Monday March 19th

Tia was really beat up this weekend. Very weak and wobbily.

So it was decided she would skip getting Abelcet this week and let her rest up and get some of her strength back.

She will still be going to City of Hope for blood work on Wednesday and Friday and for her PetScan on Wednesday. We will keep you posted.

Her potassium remains low so she is getting another infusion today and will start getting some potassium infused at home as well.

Stop over on Tuesday or Thursday if you are in the neighborhood.

Thx, Jess
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Friday March 16

We are still in the hospital as Tia's counts necessitated infusions of potassium and platelets as well as the normal M-W-F infusion of Ablecet. We will do some more blood work around 10 pm and then determine if she needs more potassium or whether we can head home.

She will be home Saturday and Sunday and would love visitors in the afternoons.

Next week we come back to City of Hope on M-W-F for infusions. In addition, Tia gets a PETSCAN on Wednesday to get a better idea of what the mass is in her right and left frontal lobes and to hopefully rule out some possibilities. On Friday, we see a new eye specialist to get a second opinion as to why Tia's eye sight has deteriorated.

On a good note, she had an excellent day yesterday and her WBC held steady this week. It is still low,but at least it is not dropping.

During Tia's recent infusions, she has begun talking in her sleep. Mostly it is unintelligible but there are some really funny comments, but I won't repeat them here. Another time and another place.

Special thanks to Tia's sister Lou for helping this week. It was really positive for Tia and it was great having Lou at the house.

Tia is making a fortune in the market as her largest position for the last 300 points has been Apple. Thinking that the radiation/chemo was giving her special insight into the future I had her fill out an NCAA bracket. So far I think we need to stick to the stock market!

Have a great weekend everyone

Sent from my iPad

Tuesday March 13

Went to UCLA to see another specialist today. He was very helpful and ran Tia through a number of interesting tests. No further results yet so we are still unsure as to why her counts are low (and not improving) and she is extremely fatigued. She can barely walk 10 feet without having to sit down and catch her breath.

We go back to City of Hope every Monday - Wednesday - Friday for Ablecet infusions. It is a full day but if anyone can drive, please let me know as I will need help next week (this week is covered with her sister Lou in town - she has been really great with Tia).

This week we will also be doing another PET SCAN to get a better idea of the white masses that are in her right and left frontal lobes.

We pass each day trying to get Tia to eat and walk a little and just wait for some answers. Hopefully we will get some answers this week.

Thx, Jess
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Thursday

Nothing new on the test results. Tia continues to have virtually no blood count but they can't figure out what is wrong. So, we decided to bring her home to recuperate for the weekend and then do another lumbar puncture on Monday and run more tests.

After fighting to get her discharged, I got a call that we have a gas leak at our house. Really? I am almost ready for locust and hail soon.

So, Tia is spending another night at the luxurious City of Hope.

We rearranged stuff so she will get her lumbar puncture tomorrow and hopefully be home sometime tomorrow provided the gas leak is resolved.

Keep smiling

Sent from my iPad

Wed Update

The new MRI showed that the mass in Tia's right temporal lobe has not grown since February 24th. It hasn't shrunk much either, but no one believes it is a cancer. As all of the tests (viral, fungal and bacterial) have come back negative, the prevailing thought is that the mass is a virus that just hasn't showed up on a test yet.

Tomorrow we will have another MRI of Tia's optic area to try to figure out what is causing Tia's virtual blindness in her right eye. Again, her sight is not getting worse, it just isn't getting a lot better.

Needless to say, Tia is antsy to get out of the hospital. Provided nothing shows up unexpected on tomorrow's MRI, Tia will come home either late tomorrow or Friday. Her counts are still very low so she will need to go back to the hospital every other day for blood work and maybe transfusions. But she will be up for visitors, provided you are healthy!

To blow off some steam, Rae, Ede, Ava and I (and Dylan) went to the gun range tonight. Yes, I did shoot the best.

Let's hope for some good news tomorrow!
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Sunday update

All the tests have come back negative. So we still don't have any idea what is going on. The neurosurgeon is coming tomorrow so maybe he will have some answers.

Her blood work continues to be very low but at least her liver tests are returning to normal.

Tia is being a trooper but it is unbeliveably boring for her. So if anyone can visit during the day this week with new/exciting stories (or movies to watch with her) that would be great.

Rae and I had a great visit with Zoe in Boston on Friday and with my mom and dad in Florida on Saturday. We are on our way back to LA so will visit with Tia tomorrow.

Will keep the blog updated with any news.

Thanks

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Tuesday

Tia just had a bone marrow biopsy. It went well and she is resting. We will get the results in 48 to 72 hours.

The results we have from the lumbar puncture are all negative so far. Meaning they don't know what is causing the infection. Her blood and platelet counts continue to be extremely low so hopefully the bone marrow biopsy will yield some answers.

Needless to say, Tia will be in the hospital for a while. I am going back east from Thursday to Sunday to see Zoe and celebrate my mother's 83rd birthday. If you can visit Tia while I am gone that would be great. Remember her white blood count is below 500 so if you feel ill at all, please postpone your visit.

Tx

Jess
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Sunday night

We don't have any definitive results. The preliminary results lead us to believe that it is not another lymphoma but we can't be sure. Tia's blood, liver and sodium levels are well below normal so we need to figure out what is going on right away.

Needless to say, Tia will be at the hospital for a while. She is remarkably strong and usually loves visitors, so please let me know if you can stop by. Her sister, Sarah, is visiting and I am going to leave a car out there for her, so if anyone from the Westside is thinking of visiting Monday evening, can I get a ride back?

Semi-funny story. So, after the lumbar puncture on Friday, Tia was cold so we wrapped a hospital blanket around her head. She had also taken a Valium before the procedure and was instructed to lie completely still for 2 hours. On top of that, she had a migraine so her eyes were closed.

So about 45 minutes into the 2 hour period, the neurologist comes in. He looks at her and starts talking to me. I ask questions about his preliminary read of the MRI and he states that it doesn't present as a lymphoma but rather as a viral encephalitis and until the LP results come back, we will treat it as such. He then states that in cases like this, the patient can be in a coma for quite some time. At which point I told him that Tia is not in a coma, just resting as instructed.

He then asks Tia to do some typical neuro exam things like push against his arms, lift her legs against his pressure... When he asked her to squeeze his fingers, I think she was a little pissed about the coma comment as I heard the doc exclaim, " ouch, that's enough". Like I said, she is one strong, tough lady.

Tx

Jess

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Friday Feb 24

Tia just got back from her lumbar puncture. She was a trooper. She has to lie flat on her back for 2 hours while the hole heals. She is very comfortable.

We are now waiting for the results to determine what is causing the new mass in her right temporal lobe. This mass showed up on today's MRI and wasn't there on February 13.

The most likely culprit will be viral encephalitis. All 4 doctors who visited today believe this will be what the ultimate tests show. As a precaution, they will start her on anti viral and anti seizure meds tonight. We won't know for sure, however, what it is for 2-3 days. The other possibilities are bacterial, fungal or lymphoma.

Also she is going to be getting ablecet which is a really nasty treatment for the fungus in her lungs. It may be a long night.

Hopefully things will start to show some improvement over the weekend.

The good news is that her spirits are good and she is loving the orange popsicles!

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Thursday Feb 23rd

Tia is back in the hospital. She went in for a routine check up and her blood counts were very low, she had a fever and her other counts were off. To be safe, they are going to give her a transfusion, some nupagen and antibiotics.

We will obviously know alot more over the next few days.

I am unable to be at the hospital on Saturday so if anyone can visit that would be great. She is in the ETC (the ER at City of Hope) but will hopefully get a room tomorrow.

We will keep the blog updated

Jess and the girls

Sent from my iPad

Drivers wanted!

Tia has a consult this Friday (17th) at 10am so would need to leave the Palisades at 830 and be back before noon

Also, on thursday the 23rd Tia has a picc changes at 345 followed up by a meeting with Dr Forman at 445. She would need to leave the Palisades at 230 and probably not be back till 630.

If anyone can drive either of these visits, pl let me know

Thx, Jess
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Monday the 13th

Great news!

The MRI and the PET both came back clean. Some scar tissue on the MRI but no lymphoma.

We will be meeting Dr Forman tomorrow and will still be looking at a stem cell transplant but for tonight it is just a celebration.

Will post more tomorrow!

Love to all

Jess Tia and the girls
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Thursday January 26

Met with Dr. Forman today and got the game plan.

Tia will be home and getting stronger until mid February when she will get an MRI and a full body Petscan. She will only have to go back to the hospital every Thursday until then, so if you are available to drive, please let us know.

We fully expect the results to show no visible cancer remains in Tia. Nevertheless, the protocol is to go through an auto stem cell transplant - and this is consistent with our current thinking. The harvesting will most likely begin in late February with the chemo and stem cell transplant taking up the month of March.

As we don't expect much to report until we get the results of the scans, this will hopefully be the last blog for a few weeks. No posts equals nothing new to report.

Have a few great weeks and GO GIANTS!

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Monday the 23rd

Tia is home and getting back to her routine. We are all very thankful.

We got the written results of the MRI from January 6th. They show that there are no new lesions or edemas (yeah!). They also show that the old lesions are roughly the same size (6x3 vs 5x4). While we wanted them all to be gone, we must remember that this MRI was taken on day 10 of the radiation.

Radiation is a cumulative process and therefore the last 10 days (and even beyond) have more effect than the first 10 days. We get another MRI next week and are hopeful of a completely clean slate!

We see Dr Forman on Thursday and we will post anything we hear after.

As always, thanks
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Tia is home

What more needs to be said

Will post more later

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Monday the 16th

Tia is feeling better. The combination of compazine and reglan appear to have helped with her queasiness and her pain is also moderated.

She is up and about and has even been eating a little.

All in all a good weekend. She has had the help of her friend Denise who came in from the east coast and her brother, JC. Thanks to both of them for being there!

Today starts the last week of radiation, so let's all hope it goes well.

Thanks again for all your support.
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Friday the 13th

Not much has changed. Tia's pain fluctuates through the day from barely tolerable to horrendous. They have put her back on a morphine drip (as opposed to oral) to supply a constant dosage throughout the day. Hopefully this helps.

Today is day 15 of radiation. Five more to go and then we get the MRI to see how effective it has been.

Ede, Zoe and I are off to Florida for 2 days to celebrate my Father's 83rd birthday.

Tia's friend, Denise, and her brother JC will be with her this weekend. She is blessed to have the support of her family and friends. It means a lot to her -- thanks from all of us!

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Wed January 11

It has been a miserable 48 hours as they cannot seem to moderate Tia's pain level. She is on a lot of morphine and sleeps a good part of each day but even that is restless and uneven.

I wish there was better news to report but at this point we still do radiation each morning and then try to make it through the day with as little discomfort as possible.

Although she is often asleep, she does like to see friendly faces when she wakes up so if you are in the area and want to stop by, please let me know.

Say a prayer

Thx, Jess
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Monday the 9th

Another set back-- Tia has shingles.  For those who don't know what shingles is, it is a very painful virus. After you get chickenpox (which Tia has had), the virus remains inactive in certain nerves in the body. Shingles occurs after the virus becomes active again in these nerves years later. In her case the reason for the virus becoming active again is that her immune system is weakened.

 

The pain associated with her shingles is concentrated mostly on the left side of her back and that is where the shingles rash is located.Unfortunately, at times this pain is excruciating.

 

The normal course for treating shingles is acyclovir.  She was taking that orally for the yeast infection in her blood stream but in a moderate dose.  They have now increased the dose and made it in IV form.  In addition, they put her on neurontin which helps control pain associated with nerve diseases.

 

This course will continue until the pain is gone.  Most likely she will remain in the hospital all week and be home by the weekend.

 

Will keep you posted

 

thanks

Sunday

Some good news. Tia's pain is way down and the Giants won.

They think she has shingles (which would explain the terrible pain). They added a new med (neurontin) which seems to be working.

She will still be in the hospital tomorrow but hopefully will be coming home sometime early in the week.

Will keep you posted.

Thx, Jess
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Saturday night

A very rough 24 hours as there seemed to be no way to get ahead of her pain. They tried some new pain meds yesterday and this morning, but nothing seemed to work.

Finally about 5pm tonight a combination of morphine, ativan and benadryl got her to a restful sleep.

The good news is that the MRI showed no new growths and no edema and the xray of her abdomen (where all the pain is) showed nothing alarming. This leaves the doctors stumped as to the cause of all the pain.

All we can do is treat the pain one day at a time and hope we find some combination to get her a more permanent relief.

Thanks

Jess and the girls
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Birthday. January 6th

Not the best birthday. Tia slept most of the day other than being awakened for radiation this morning and an MRI in the afternoon. They are scanning her to see if the radiation caused an edema in her brain. If that happened, then it could explain a lot of Tia's recent symptoms.

We will have the results of the MRI back later tonight and I will update the blog at that time.

I know a lot of you have been calling and texting. Tia just hasn't been up to answering the phone. Hopefully she will be up to it this weekend.

Thanks

Sent from my iPad

January 5th

Tia was readmitted to the hospital today.  She has been having a lot of pain and nauseousness the last few days and the doctors felt they could control both symptoms better if she were in the hospital.  In addition, she has been unable to eat anything so has lost quite a bit of weight since the new year. Hopefully, they will get a handle on the problems and she can be released on Monday.

 

It is her birthday tomorrow but we are postponing celebrating her birthday until after all the treatments, then we are going to have a huge celebration.

 

She had been having a hard time answering the phone or responding to e-mails in the last few days, but does listen to the voice messages and read the emails-- and they both cheer her up.

 

Please reach out to wish her a happy 39th (hmmm, seems older but lets go with 39) tomorrow.

 

thanks

 

Jess and the girls

 

 

January 3rd

Today was a set back. After radiation Tia needed to spend the afternoon in the emergency room. She is home now but not having an easy go of it.

Hopefully tomorrow is a better day.

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January 1st

Tia is home and getting stronger. She was up and about today and even had some bay cites sub ( for those not from LA, it is a great Italian deli).

The at home infusions are going along fine and we start radiation again on Tuesday. She is still dealing with a lot of pain and all the medicines still throw her system into chaos, but all in all it is the start of a better year.

We hope everyone had a good new year's day and a healthy year.

Thanks everyone for getting back to me about driving for radiation. We have the entire schedule filled!

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