Sunday, February 19, 2012

Day 25

Thank you for waiting...

I'm still getting settled in at the Gomes Ranch, but I'm happy to report that the California sunshine is reinvigorating this California girl! The last few days have been a bit of a whirlwind, so here's a summary:

Day 21

Mom began her first round of Chemotheraphy with the Folfirinox. The staff at Kaiser Santa Clara (KSC) was attentive and positive. Bag #1 was a piece of cake. Bag #2 brought on some sweats and nausea, which the attending infusion specialists quickly addressed by halting the treatment, administering a counter medication until she regulated and then began again. Bag #3 came home with mom in a small shoulder bag.

Day 22

I arrived at SFO in the morning and came home to a tired, but cheerful Denise. We both feel the relief of finally being together. Thank you to all of you who helped make this reunion possible. Mom did experience some nausea and loss of appetite, but part of that was due to some confusion regarding the days she needs to take her anti-nausea, which we remedied.

Day 23

We returned to KSC to have the bag removed from her port, which was a quick and painless procedure.

Mom did much better with her nausea and was able to eat hearty portions. In fact, we even made a visit to Carter & Tonda, who live just moments from KSC. It was great to get out of the house and play a little. Carter loved the haircut so much, he said she should've done it years ago... I'd say she's not looking half bad for post-chemo!

Day 24

We had a lovely, quiet Saturday. Our only venture was out to KSC for a quick tuturial on how to administer her daily shot of Neupogen, which is designed to stimulate white blood cells in her bone marrow. Along with the cancer cells, the chemo will have a strong effect on her white blood cells - little disease fighting soldier cells - which only have a life cycle of 7-10 days.
So, once a day for 6 days, I'll be poking mama in the tummy with her daily dose. Even though we were both a little intimidated by the first shot (she's not such a big fan of needles) it was easy and painless.

Then, since Mom had been craving pizza, we stopped by Woodside Bakery for some fresh pizza dough and fixed up our own all-natural margarita pizza. It hit the spot!

Day 25

Mom has experienced some mild congestion over the past week, which seemed to culminate in a headache this morning. So, we called to the Advice Line and they set up an appointment earlier this afternoon to have her checked at the KSC clinic. We were seen quickly and given good news that her lungs are clear, she has no fever, and is most likely experience mild congestion - no infection. So, with a little nasal inhaler and some OTC Allegra, we were back home. Already she's feeling much better. Better safe than sorry!

I hope this gives you all a better picture of where we are. We're still navigating this new routine. Once we have our camp set up, we'll be able to reach out more.

Even though we've come pretty far, we've only been at this fight for less than a month. Thank you again to all of you who have helped us rally. Reaching out to you and being available to your need to keep close to this beautiful woman is forefront on my heart. As we move forward, please know that we want all of you with us.

As for me...

I had a rather rough evening on Friday. The overwhelming truth of it all is much more acute now that I'm here. The old calming methods I carry in my bag of self-care tricks aren't quite up to snuff anymore. I feel fit to burst at times. Spending some time in the hot tub, breathing, stretching and singing have been truly rewarding.

It seems a miracle to me that we exhale a fatally poisonous gas, Carbon Dioxide, which the Earth receives and converts into the Oxygen we need to live. Similarly, as I release the toxic angst of this painful time and entrust it to the world around me, I can be still in the hope that what I release may return to me a nourishing and healing sustenance. Though release feels less intuitive than resistance as I face the battle ahead, it is only when I let go that I feel truly at peace.

Wednesday, February 15, 2012

Day 20

It begins...

Today at noon, mom receives her first chemo installation. She will need to be at the facility for 6 hours while they monitor her initial reactions to the treatment.

Then, she'll go home with a bag of the magic poison juice slung around her shoulder like a hand bag. It'll stay connected to the port they installed for 48 hours until we head back to the facility to have it removed. This will happen every two weeks - no time off.

I arrive tomorrow morning, 2/16, where I'll finally be in that lovely ladies arms. Thank you all so much for taking such good care of us. Once we get a bit more accustomed to our routine, you can be sure we'll be calling in all those generous offers we've been collecting.

It seems time is our teacher now.
We look into the fog that awaits and envelops.
Searching for some tool or weapon,
Some light or familiar face,
Some sense of the road,
And though we cannot see the hand before us,
We hear the voices of love
Echoing through the wilderness.
And so we are surefooted in our hope.

Saturday, February 11, 2012

Day 16

Ladies and Gentlemen, I am proud to present mom's official oncologist...

Dr. Pan is with Kaiser in Santa Clara and has made a wonderful first impression on John and Denise. Not only was he willing to see her right away, but his encounter with her was positive, forthcoming and full of fight.

He began their meeting with a very personal and sincere apology for the news of her diagnosis. Then, he said, "Let's get to work." He agreed that an aggressive chemo treatment was ideal given her obvious health and determination. He broke down the side effects of each element of the treatment and ensured her that he would be monitoring her closely and making any adjustments necessary to keep her as comfortable as possible.

He called for new tests across the board, refined her prescription list and gave she and Johnnie all the information they needed to move forward. In short, as mom says, "We've found our Wagon Master."

Dr. Pan will contact us on Monday to schedule her first date of chemo, which will be within the week. Also, since she's able to get treatment through Kaiser... it's covered by her insurance! Mom is much encouraged to have finally found a health care practitioner on whom we can rely to hedge us in as mom fights for her life.

And, fight we shall!

Friday, February 10, 2012

Day 15

Before & After

The girl with the sunshine hair has found a new do for her journey. I thought you all would appreciate seeing her shining face.

We do have news from a yesterday's appointment with the GI Oncologist at UCSF - Dr. Ko...

It looks as though Folfirinox is the cocktail of choice! And, according to Dr. Ko, there is absolutely no reason why mom cannot receive this treatment through Kaiser. There is a beautiful facility in Santa Clara where a colleague and fellow Standford Univ. alum, Dr. Pan, currently works.

Here's the glitch... Kaiser insists that mom is a new patient and therefore in need of yet another hour long appointment to review her treatment options. The first available appointment isn't until 2/22. Clearly, we're not going to wait that long for her treatment. So, we're currently trying to arrange for her to receive the Folfirinox asap - hopefully Monday 2/13.

Please send your positive thoughts toward our efforts to expedite this process. We're so ready to begin fighting this vicious disease. Mom is already rocking the new do in preparation for her treatment - so we're good to go!

Thursday, February 2, 2012

To Denise

Many of you who knew Barbara Seufert, remember her vivacity and lust for life. Perhaps you were lucky enough to see her wearing her cocktail glass on a chain around her neck, filled with a Manhattan, I imagine.

If she managed to get the attention of room, or should I say when, she would often raise her glass and recite her favorite toast in Spanish:

Salud, dinero y amor, y el tiempo para gustar.
To health, money and love, and the time to enjoy it.

This blog is dedicated to this toast, which I say now as a prayer for us all. My mother, Denise Seufert-Green, is battling pancreatic cancer at 61 years old. But, she is not fighting alone. You are here. If you would like to voyage with us through this beautiful and mystical time, you are welcome.

I will be regularly updating this blog with news of Mom's treatment. Feel free to comment, ask questions or simply share your support. Mom and I will be listening. For those of you who are not yet familiar with the particulars of her current status, here is what we know today:

On 1/26/12, Mom was diagnosed with stage 4 pancreatic cancer which has metastasized to her liver. She is otherwise a very healthy woman, which will open up our treatment options. There really is no way of knowing her final prognosis, so she is prepared to beat all the statistics, which otherwise seem quite bleak.

She has an adenocarcinoma, which is a protein based cancer that spreads quickly through the system, so we suspect she's only been sick for maybe 6 months at most. Our hope with treatment is that her cancer will respond and either suspend or decrease the growth of her cancer and her subsequent symptoms. Though she will not be able to get her treatment through SCCA, we can bring what we've learned from our meeting with one of their GI Oncologists to a treatment center closer to home (Woodside, CA). Her treatment will most likely involve the following:

Chemotherapy: Most likely a cocktail of the usual IV chemo for pancreatic cancer, Gemcitabine, through the port she had installed Friday, 2/3/12. The ingredients are still experimental, but there are studies that show one particular formula, Folfirinox, has been successful at doubling the life expectancy of its recipients.

Enzyme Replacement: Mom received a prescription for a special enzyme medication that will help mom digest fatty foods and eat more high caloric foods which will be important to keep her strength up through the chemo - so cheese is back on the menu! Phew.

Pain Management: She is currently happy with a small dose of pain medication, but as her need for higher coverage increases, which it may, they have a simple procedure to numb the area causing discomfort, thus reverting her strength to her healing.

Diet: Her nutrition is key and I know that many of you have already made contributions in this and thank you. We have a small handbook of good foods and bad foods, and when we find a place for mom to begin receiving her treatment we'll look for a specialty nutritionist as well.

Addressing Future Needs: It is possible that mom's kidney could get blocked up with bile causing her to be jaundiced. If this happens, there's a simple procedure to install a stent that will open up the passage and keep it open.

The Next Step:
Mom sent her medical records to UCSF yesterday and we expect to hear from them on Tuesday or Wednesday of next week. Once we agree on a particular chemo-cocktail (even if it isn't a vodka martini with three olives), Mom will begin chemo as soon as possible.

I know this is all so hard. But, we've been given more options and that's something to celebrate.
I'm sure you have a lot of questions and I'm happy to answer them. Please send them my way and not to mom. Please direct others to do the same.

As to her prognosis, there's only one answer: there's no way to know, but there's every reason to hope for the best. The one thing we know is that cancer has never met Denise before and it will never be the same having met her. Thank you for all of your love and support and believe me when I tell you that I will be calling when the need arises.