Things are Looking Better

Sorry for the wait. I had CT scans yesterday of torso and pelvis, and brain MRI.  Had bone scan today.  Finally heard from my oncologist around 8P which is good because she is leaving on a plane tomorrow.


She says everything looks better. My bones are healing, my liver tumors are smaller, the lung tumor is smaller.  The only thing that didn't come back (because the report has not been written up yet! Rrrrrrrr) was the brain MRI. But I'm assuming that since everything else is responding, the brain tumors are still gone.  Leaving me with a swiss cheese brain, hence the continued cognitive difficulties.


Which reminds me....Finally bought the bigger car to get my neurologist off of my back.  Ended up with a Toyota Highlander Hybrid.  I just couldn't bring myself to pay more than that.  It's nice. It's no Audi Q7, but a little bird told me that those were having problems.


People are still honking at me, but I think it's because I am driving too slowly. And I haven't even come close to hitting any pedestrians lately.


I will update on the brain MRI when I hear, but the upshot is that we are outrunning the cancer for now. And to top it all off, I feel great!

A Different Kind of Warrior

Sorry that it's been so long. I was too busy being sick.


But something happened this weekend and I've turned a mental corner. I am no longer a warrior who is fighting to kill cancer until it catches up with me and kills me. I am now someone who is going to beat cancer completely.  It took 8 months for my attitude to get here, but those fuckers who diagnosed me and gave me a 2nd opinion scared the crap out of me. I was very depressed and unable (unwilling?) to do my own research and take my recovery into my own hands. Instead I have just been doing whatever the doctors tell me.


I did do the hyperbaric oxygen treatments (initially to get Mark off my back) although my oncologist told me it was a waste of my money. Eventually I did come to believe that hyperbarics have been an crucial part of my recovery up to now.


I now know that I need to concentrate not on killing cancer, but on building up my immune system so that my body can kill cancer or keep cancer at bay the way it was supposed to.  Why did my immune system stop working???  Maybe because I did a *lot* of infertility treatments where they suppressed my immune system and NK's (natural killer cells).  Stress?  Way too much sugar? Apparently, eating sugar when you have cancer is like throwing gasoline on a fire.


I am implementing some inexpensive and natural treatments that have helped a lot of people. I'm going to remain on the Tarceva because it isn't toxic. It is a "biological" that targets a piece of the cancer's DNA and causes the cancer cells to fall apart. Some of these treatments I have started and I already feel a huge difference.


Just the mental shift has made such a difference.  Yesterday (Mother's Day) Mark looked at me and said, "Oh my god, the old you is back!" I believe that the oncologist is going to have a big surprise when she sees the results of my body scans at the end of May.


I want to say a special thank you to Michael Brooks.  You know why.

Ides of March

On March 9, 2007--the 2 year anniversary of our triplets' births--a judge in Oklahoma signed permission for Xavi and me to leave OK so that we could go home and begin living as a family. My arms had been empty for exactly 2 horrible years.  Xavier came home, made it impossible to not fall head over heels for him, and healed our hearts.


And now I sit here exactly 3 years after that, with terminal metastatic cancer. making it absolutely impossible for me to deny that things can change at any moment without me having any control.  The second life altering (life killing?) event in our lives as the Santaballa-Marcum family.


To update, I am feeling a million times better than I was last month. Tarceva was a monster at first, but my body settled into it and I'm moving along. I have been able to resume some of my childcare responsibilities. Tomorrow I will be allowed to drive, albeit with a bunch of restrictions in place.  This will greatly improve the quality of my life. I have to get a ride to go to the MJ dispensary.  How humiliating is that?!


As for the Audi, it is definitely out of the running. $69K??? I could buy 3 decent cars for that.  We're looking at some other alternative fuel vehicles with the 3rd row.


That's it for now.  I will let you all know how it goes on my first day of driving in 6 months tomorrow.

Tarceva is no picnic.

I was told that Tarceva might give me some tummy trouble.  Oh my.  Different from the kind of sick I was from chemo--not necessarily nausea--more like sour and upset tummy.  This disease really is the pits.  In order to fight it, I have to take things that make me feel like I'm dying.

I have permission to drive effective March 11.  That will give me 6 months seizure-free.  I'm not allowed to have anyone with me in the car while I'm driving, and I'm only allowed to drive a heavy car.  I guess if I have a seizure no one in the car will get hurt.  Just the folks outside.

Mark and I had been looking at the Audi Q7 Diesel.  We walked away from what we thought was a not good deal on one a few months back.  And then Mark made one of those cancer husband statements while we were in the car driving home from my first hospital stay (for cancer): "As soon as they tell you that you can drive again, I'm getting you that Audi!"

OK, I'm ready to go shopping.

Tarceva is here

We'll start tomorrow.  Start thinking good thoughts.

Morning at our house

I've received permission to be alone with my children for short periods of time.  This frees Mark to be able to leave in the morning before the nanny arrives. He's been going to a yoga class in the morning which I know makes a huge difference in his mood.

Mark is very concerned about my use of my herbal medicine--MJ.  I guess I have been heading back toward addiction.  Once an addict always an addict.  Regardless of the reasons I am using it, it's a drug that I love and I'm loving it a little too much.  So I haven't inhaled any vapors today (I don't smoke it--I use a vaporizer) and am going to try to use it only when there is preexisting nausea.  I have been using MJ to prevent the nausea from starting (it's very effective for that).  I'm not ready to give it up yet.  Addiction, addiction, addiction.

I have deactivated my FB account

Possibly temporary? Don't know. I just got tired of being the poster child for cancer.

I start Tarceva as soon as insurance approves it.

Updates will be posted here for now.

No more chemo? Now what?

Mark and I woke up with a good feeling this morning.  We were not disappointed with the scan results. Lung tumor (the primary) is smaller, but still active. Liver tumors are 50% smaller in size, but still active. Brain tumors are dead, and bones are actually healing.

Dr. Terpenning's first instinct was to stick with chemo since it's working, but I am having so many chemo-related complications right now and sooner or later I will reach my limit in terms of toxicity.  So we are also looking at Tarceva which is a biological that targets a specific marker in my cancer. We are also looking at clinical trials, specifically one at the University of Miami.

So we've managed to slow this fucker down.  The next goal being to slow it down even more so we can completely kill it.

One of my missions this week is to work on nutrition, vitamin pushes, hyperbarics, eastern medicine, etc.

Hey! Another update.

I felt so well today--as I always do the first 2 days after chemo--and totally overdid it. I had a great time overdoing it too.

This is hard now because we just wait a few weeks for results and then what???  I am really hoping that in a few weeks I will be given the ok to eat a raw vegan diet.

That's all I got. Don't want anyone to get worried about me so I will try to keep posting.

Body Scans

6th Chemo is Tues. Then I would guess that 2-3 weeks later I will have a complete body scan. I am dreaming of and picturing all of the scans showing no cancer left in my body. After we see the results of the scans we will decide the next step.

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.

Thank you for supporting my team!

They need you. Please contact Tracy@strollerstrides.NET or Tracy@Mynhier.com to help us with meals for me and my team and other needs. Would love offers of rides to appointments to give my sister and husband a break and give me someone else to look at. It's easy. I have a handicapped placard and a lovely folding wheelchair.

A little more about my cancer

Adenocarcinoma (non-small cell) of lung origin with metastasis to the brain, liver, and bones (especially hips).

So the story is that sometime in the last year or two some cell in my lung went pffffftttttt and mutated wrong.  Some other cells decided to copy it. And then a flew like a wildfire through my body.

My beloved chiropractor has full body x-rays of me from last April.  He is killing himself going over and over them.  He has taken them to experts and no one can see anything. So this fire is pretty recent.

It's just a fluke of nature. I drew the short straw. Apparently more and more young women are being struck with this.

As most of you know, I have been dealing with the hip issues (body workers, acupuncture, then MRI's, orthopaedists) since 8/9 (Ivy's birthday party where some of you noticed me limping). But it was only the seizure that I had recently that gave it all away.  My oncologist says that it is extremely rare for this cancer to be caught prior to metastasis. A chest x-ray may not have even showed us unless taken fairly recently.  When we adopted Ivy I had to have full medical workups and bloodwork. Mark and I recently bumped up my life insurance (when you are a full-time mama you are expensive to replace) and I passed with flying colors.

Current treatment:  I have had 4 brain radiation treatments and 1 hip radiation treatment. The decision on my hips is to treat the right hip only right now. There is a fairly large lesion in the right femur at the top and there has been fear of me breaking my hip.

As far as the left hip, I am not currently in pain. That hip is riddled with cancer. It's all up in the ball joint and all over. But no one will let me walk or be on it, so it is feeling ok. We are trying to save the bone marrow there for later. And at some point I will probably require a complete hip replacement?

Next plan is a chemo blast. The only thing holding us up from starting is that we are trying to get in to someone at UCLA or City of Hope for a 2nd opinion.  Because it is a fast moving cancer, chemo should be effective and quick on the parts of my body that aren't being radiated.

That's it for now.  Love you all and thanks for your support. Thanks especially for supporting my team--my husband, children, sister, niece, and nephew.

Life sucks (alot) and then you die.

I'm not going to beat around the bush. I have extremely advanced lung cancer with brain, liver, and bone metastasis. There is a bone tumor in my hip which is of course what has been causing all of this sciatic pain. Unfortunately some lung cancers tend to be asymptomatic and are not caught until there is metastasis.

The tipoff was a very strange seizure that I had at around 2:30P Friday at Xavi's preschool. My left arm started to twitch, became increasingly more pronounced, until my arm was moving so violently that I was whacking myself and everyone near me in the head. I was conscious during the whole thing, but couldn't control my arm at all.

So Mark brought me to the ER at St. John's in Santa Monica. Very good call. I am here now.

The kind of seizure I had indicated a problem in the brain and I was sent for a brain CT scan, which showed brain swelling, which led to brain MRI, which showed tumors, which led to full body CT scans, which is how we have so much information. They were able to do so much on a Fri. night! If you ever have a problem come to St. John's. St. John's rocks.

If i don't have another seizure, they are going to send me home today with seizure and pain medication, and steroids to control the swelling in my brain. My sister is here with her 2 kids.

Tomorrow (Monday)morning I will have a liver biopsy. The cancer is the same regardless of where it is so they are just going for the easiest place. After they get biopsy results on Tuesday, they will determine an exact course of treatment. I will start radiation on my brain tumors. They will also get me started on systemic (everywhere in my body) chemo this week. Radiation and chemo will be weekly for 4 weeks and then chemo every 3 weeks. Oncologist anticipates little to no nausea but I will lose my hair. And I will have cognitive changes (memory problems, confusion, etc.) during brain radiation and for 2 weeks after.

Probably radiation on my lung tumor. We'll know more once we know what kind of cancer it is. Oncologist would like to radiate the hip tumor (to get me as back to normal as possible (it is so excrutiating). Unfortunately my bone marrow is in my hip and I need it! So hopefully the bone tumor is far enough from my actual hip joint that they can get rid of it. My hip seriously hurts!

I'm sure by now you're wondering about prognosis. Chances of immediate treatment resulting in complete remission (no tumors) are 20-30%. Unfortunately chances that no cancer will return are 0%. So unless I get hit by a truck, I will be dying from this cancer. But I'm not paying attention to stastistics. I plan to create my own statistics!

So we will just keep attacking the cancer for as long as we can and keep buying as much time as we can for my kids. They need a mama and the mama they need is me! My goal is to do Ivy's hair for her prom.

What I need:

1) NO PITY! I've got enough self-pity going for all of us.

2) Act as normal as possible in front of my kids.

3) If you are local and are cooking for your family, please cook double and bring it over. Maybe someone would be willing to take on scheduling this so that it isn't more chaos for my family.

4) I am in no condition to be consoling anyone. Please don't feel like you can't be as emotional as you need to be in front of me. I would love to have friends to cry with. But please lean on your support system for comfort.

5) Kid help/playdates at our home whenever you can. I may not even be home as will be having lots of treatments, tests, appointments, etc. As soon as I know who will be taking care of my kids, I will get that/those numbers to you. My sister Sylvia is a good place to start for now. (910) 512-3293. Anyone have 5 to 10 year olds for my niece and nephew to play with? They are homeschooled. Maybe some of my home/unschooling friends wouldn't mind them tagging along on one of your outings?

6) I need to hire fulltime childcare. Preferably fluent in Spanish. Ask around.

7) Please don't forget about us 1 month from now, 2 months from now, 1 year from now...

I may think of more. If you have questions that I haven't answered please feel free to respond to this or email me.

Mark is flipping out. Please feel free to reach out to him.

Mark's email: markmarcum@mac.com
Mark's cell phone: 310-425-9157


So sorry for the news. Life sucks! Life has been especially mean to us. Sorry. That's me feeling sorry for myself.