Little Update

I am kicking cancer's ass. I mean it. I have completed 4 of my 4-6 chemos and the 5th one is on the schedule. I only feel nauseous and pukish about 1/2 the time (MJ usually helps with that).  My blood counts are good. Some of the numbers are within range and some are on the high side of low. I really need to remember this when I am feeling like hell.

I have gotten back to spending time with my children as much as possible. This usually involves sitting in a big chair in the living room and interacting with them. They come to me with books to read to them. They involve me in their play by calling out to me to look at what they are doing. They come to me for kisses and to climb up on my lap. This is wonderful as I hardly saw them the first 2 months or so as I was bedridden and they were bonding with Anabel. Ivy is walking like a pro and talking up a storm in both Spanish and English.

Mark is a real trouper. He takes Xavi to preschool pretty much every morning. And he gets home just in time to get the kids down. I've actually been putting Ivy to sleep while he helps Xavi. Anabel picks up Xavi from preschool and sometimes I go if I am feeling ok. But Mark is the hero. The kids tend to wake up at night and he deals with it as I am passed out from pills. He feeds them in the morning and gets them dressed until the nanny arrives. He lets me sleep in unless I have an appointment. It is neat seeing the kids bonding so much with their Papá. His prize for taking the time with his kids.

Even though I am an atheist 12-Stepper I have decided that I really should have a higher-power to turn things over to. I have decided that my higher-power is going to be "miracles." Because I could really use some and we all hear stories about miraculous recoveries and I am ready for one.

So this is what you get from me on a "good" day. Prepare for the possibility that tomorrow night I will be asking you to put me out of my misery.

Deep Vein Thrombosis

I'd been having excrutiating pain in my left leg. My assumption was that it was spreading down from the cancerous hip. Also the left ankle looked swollen all the time.

When I told my oncologist, she said that what was probably happening had to do with my being weaned from a high dose of steroids. The high dose of steroids had probably been preventing swelling and pain that was underlying from the cancer.

But that we should also rule out clots in the leg.

The plan was to go over to the hospital after my chemo on Thurs. to have a doppler of the leg, but chemo ran too long. So we went on Friday. Much to our surprise, there is a large clot in a vein that is running from the back of the thigh down to the calf.  The good news is that it is probably from chemo killing cancer causing "stuff" to break off and accumulate in my veins.  The bad news is that it puts me at risk for a pulmonary embolism if something breaks loose and makes its way to my lungs.

So now I am on blood thinners.  Several days of an injectible (remember Lovenox girls?) and then Coumadin.  I will have to have the Coumadin constantly monitored.  For the time being I have to stay in bed with my leg up, no weight-bearing for about a month (wheelchair), and take it easy.  Not being able to do stuff just makes me depressed.

But it's just part of the fight I guess.

Addiction

Along with drugs and alcohol, here are some of the other substances that I am addicted to and therefore abstain from.  Some folks have asked me.

Types, forms  of sugar

Ace-K
Acesulfame-k (Sunette, Sweet and Safe, Sweet One)
Alcohol, alcoholic drinks
Alitame
Amasake
Artificial sweetener packets (Equal, Sweet'n'low, Sweet Thing, Splenda)
Artificial flavors
Aspartame/NutraSweet
Augmiel
Barley malt
Cane juice
Caramel coloring
Concentrated fruit juice
Corn sweetener
Cyclamates
Date paste, syrup
Dextrin
Dried/dehydrated fruit
Evaporated cane juice (e.g., Florida Crystals)
Extracts
Fat substitutes (made from concentrated fruit paste)
Fructooligosaccharides (FOS)
Fruit flavorings (check with company)
Fruit juice concentrate
Glucoamine/glucosamine
Glycerine
Honey (any type)
Jaggery
-ides, any additive with this suffix:
monosodium glycerides, olyglycerides, saccharides (any), trisaccharides,
diglycerides, disaccharides, glycerides (any), monoglycerides, onosaccharides, etc.
Licorice root powder
"Light", "lite" or "low" sugar
Malted barley
Maltodextrins
Malts (any)
Molasses, black strap molasses
"Natural" flavors
"Natural" sweeteners
Nectars
Neotame
-ol, any additive with this suffix:
carbitol, glucitol, glycerol,  glycol, hexitol, inversol, maltitol, mannitol, sorbitol, xylitol, etc.
Olestra (made from sucrose)
-ose, these additives with this suffix:
colorose, dextrose, fructose, galactose, glucose, lactose, levulose, maltodextrose, maltose, mannose, polydextrose, polytose, ribose, sucralose, sucrose, tagatose, zylose.
Raisin juice, paste or syrup
Rice malt, sugar or syrup
Rice sweeteners
Sorghum
Splenda (Sucralose)
Stevia
Sucanat (evaporated cane juice)
Sucraryl
Sugars, any type:
apple sugar, barbados sugar, bark sugar, beet sugar, brown sugar (any grade), cane sugar, caramel sugars, confectioner's sugar, date sugar, grape sugar, invert sugar, milled sugar, "natural" sugar, powdered sugar, raw sugar, turbinado sugar, unrefined sugar, etc.
Sunenette/Sweet-One (Acesulfame-K)
Syrups, any type:
agave syrup, barley syrup, brown rice syrup, corn syrup, date syrup, high fructose corn syrup, maple syrup, raisin syrup, yinnie syrup (rice syrup), etc.
Vanillan
Whey (as an additive)
Xanthum gum

Types, Forms  of Flour

Any bean, vegetable, nut, or grain that is ground into flour, meal, or powder is "flour" 

Starches and guar gum are also considered flour.

I do not consume any kind of flour.

Types & forms of wheat

Bran (if made from wheat)

Bulgar

Durum wheat

Gluten (wheat protein)

Kamut

Red wheat
Red spring wheat

Seitan (made from wheat protein, gluten)

Semolina

Spelt

Triticale (a wheat/rye hybrid)

Wheat berries

Wheat bran

Wheat flakes

Wheat germ

Whole-grain wheat

Winter wheat

Please note: This list is not exhaustive. If you are unsure about an ingredient, it is best to check with the manufacturer or forego the product.

Oncologist Day

This is my oncologist.  Marilou Terpenning.

It's not a great picture of her. I scoured the internet looking for one and it took me a while to realize that this was even her.  Imagine her now with long white hair. She looks at least 15 years younger than in this pic. She is quite pretty.

She is also awesome. She talks to me like a human. She gets it that I am a mama and that cancer needs to be part of that life, not take over that life.

She was Ronald Reagan's oncologist. My current orthopaedist (the one dealing with the hip cancers) was also RR's ortho.  I find this ironic. But we all know what happened to RR.  He lived to a ripe old age and died of Alheizmer's.

We are seeing her today at 2:30P (PDT) and we will be formulating my chemo plan. Please keep us and her in your prayers and positive thoughts today.

Please include Dr. Terpenning in your thoughts and prayers for us from now on.  She is of course an essential part of our team.

Oh look, I found a slightly better picture.

Family Sunday

My desire today was for a family swimming pool outing. Luckily these days I pretty much get everything I want.  I had Xavi in a pretty radical swim class this summer (they taught him how to swim like a fish in 5 days) and I want him to keep up his skill.  So we went here.  I'm almost afraid to share about it because I want it all to ourselves.










The kids had a blast swimming. Clara made some friends her age--turns out we knew the parents so we left her behind with them. Perfect.

Look at me, I wrote two whole paragraphs without talking about cancer.

I got asked about my prognosis today by a friend. First time someone has asked. I answered honestly. We haven't asked and no one has told us. I know that I am expected to get through 4-6 chemo treatments with one every 3 weeks. I told my oncologist that I would like to do my daughter's hair for her prom and she said, "Let's work on that."

I am starting to have some feelings other than shock. So far mostly depression and I need to get out of that! I need that fierce feeling, but to be honest, the fierce feeling just ain't here right now.

2nd Opinion (UCLA Specialist) Update

Dr. Kabbinavar was lovely. He was pacing the halls waiting for us when we got there. Very attentive.

He started out by saying very simply that my condition is fatal and uncurable. OK. Knew that, but it's hard to hear.

We reviewed the status of things, all of which we already knew.  He concurred with what we are currently doing which is radiating the brain metastasis and right femur lesion.

He agreed with my current oncologist that we need to start conventional chemotherapy to start systemically attacking the disease, and with her protocol suggestions. He has one very specific protocol that he feels we should use so we are going to ask for that.  That particular protocol includes taking a B-12 shot one week ahead of time so he had it given to me.

He gave highest marks to my current oncologist. He told us that he would be happy to assist her and us in any way with my case.  He asked that before any new course of treatment is started that we go to see him so that he can help with the decision. He is available at any time to me/us to answer questions or to run things by him.

As far as the issue of all the sexy new drugs and clinical trials: my brain metastasis invalidates me at this time for anything. We would have to wait until that is under control which is a bad idea considering what is flaming through my body. We can always look into that later.

We also discussed that the longer treatment keeps me alive, the more chances there are that there will be new treatments. Dr. K is using a drug right now that has only been out in the last 6 months. It is very effective.  Unfortunately, they can't give it to me because with brain lesions it has a tendency to cause the tumors in the brain to bleed. That wouldn't be good because there isn't a lot of room in there and to put me in a vegetative state at this time would kind of be a bad idea considering what our goals are.

So we feel good. We'll go back to our doc at St. John's early next week and discuss starting chemo.  My last radiation treatment is on Tues. of next week.

We are sending my sister and her kids home at the end of next week.  Next week we will have the new nanny. Plus we have my beloved house manager Concepción-- she's been with me the last 15 years--with us until the end of October.  We kind of need to see how this is going to go without my sister.

This isn't my sister's life, this is mine. She needs to get back to her life and then be available to come back on a moment's notice.

Now a pitch for Concepción.  She is a brilliant housecleaner and home organizer. She has managed the chaos in my home since 1994. She is worth twice what she charges. She needs some houses to clean. She lives in a one-bedroom apt. in WLA with her husband and 3 kids. She is tough and easy to delegate to. She is a self-starter and initiator, but also good at taking specific direction. She speaks English.  Let's fill up her schedule so that I can feel a little bit less guilty about letting her go.  :)

Love you all. Thanks for the continued love and support, rides and FOOD.  If any of you like to make beef or chicken stock, that is probably what I will be surviving on for the next few months. Organic hormone-free please. If you can divide it up into one cup portions (an easy way to do this is to freeze it in a freezer bag) that would be greatly appreciated.  And of course food for my husband and children has just been fabulous. Thanks for keep it coming.

Still feeling fierce, just a little tired. My plan is to go to preschool for at least part of the day with Xavi tomorrow. Prayers or positive thoughts please that I will be feeling well enough for that.

Please help us! How the US healthcare situation is affecting our household

Sylvia and I have found a nanny housekeeper that we love. She is young (28) and willing to roll up her sleeves and work. She has a green card, with a car, a license. As does her husband. They have a daughter who was born in this country.

We have made her a generous offer of employment. Well above the poverty level for a family of 3 in this country/city. But she is having trouble accepting our offer because her salary would disqualify her family for Medi-Cal. We are not willing to pay her under the table. Her husband is diabetic and they depend upon Medi-Cal for his expensive medications.

We have looked into low-cost medical options for them and there is nothing reasonable due to his preexisting condition. This is beyond infuriating.

We are talking to our business attorneys and accountants but some creative thinking would be appreciated.