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.