Reasons for Chemo Start Date

In case some of you are wondering why the chemo isn't starting right away, here are the reasons. I also posted this in a comment to another post but not everyone will look at the comments.

I have 3 main reasons for waiting until the 5th. Firstly, I want to speak with the Stanford folks first to see if they have any newer, better ideas. That appointment is next Wednesday, June 30th. Secondly, I always prefer to have chemo on Mondays because that gives me the best chance of feeling good and energetic every other weekend. Thirdly, starting July 5th makes chemo weeks skip important scheduled events, such as our Anniversary party.

Well, I guess there may be a 4th: I have so much to do and am not mentally ready. I wanted to get through a couple of weeks to finish a couple of projects before I'm unable to. :-)

Pics of Theo and Cassie

Someone recently requested that I post pictures of Theo and Cassie. I honestly don't remember who that was! But I wanted to fulfill that request... but then I realized that I already had. It's just not obvious. Over on the right, in the list of links, is a link to "Photos of Theo and Cassie". There are lots of photos there, including some that were taken last month. You may click there anytime to see the kids! Here's the link here too: Theo and Cassie pics

Today's Updates

Yesterday Dave and I met with the new oncologist to see what he had to say after he met with his tumor board. He said that they agreed that a biopsy was not necessary because of the elevated CEA level. Then he said they also agreed that I should have a stent put in place to open the ureter that's being pressed on by the tumor. We arranged for that to happen this coming Monday. It's an outpatient procedure. I'll be put to sleep during it so I'll be comfortable. Hopefully the stent won't give me any trouble. I'm told it's uncomfortable for some people.

He still likes the plan to leave the nodes in place for now and load me up with every chemotherapy drug possible. Then he would take out the node (surgically, radiologically, or with the Cyberknife, whichever method is appropriate then) either mid-way through chemo or at the end, if anything's left. He expects to see it shrink quickly.

We do still want to speak with the Stanford GI Tumor Board next week. I believe there will be some value in learning what they have to say. Also we can learn if there are any clinical trials that I should consider.

I did ask him how long does he expect me to be able to work in my garden. He said that at this point, statistically speaking, I have a 10-12% chance of this 3rd round of chemo to eradicate everything and cure me. That means most likely it won't cure me. But it could buy me a couple of years at least until new drugs are available and perhaps later on something might be more effective. At the least, he expects that I may have to keep going through this with long breaks in between and I should be able to play in the garden for a few more years. He's hoping that some new advances might turn that into decades. Eventually cancer will be treated like a chronic disease where a person might have to take drugs for the rest of their life but it keeps the cancer from being fatal. I guess we are hoping to buy time until something like that happens. I know that there are researchers all over working on that as fast as they can.

CEA and the GI Tumor Board

The CEA test stands for Carcinoembryonic Antigen. It’s a blood test to look for cancer markers in your bloodstream. Click here for more information about it: CEA Test

Over the last two years I’ve asked my oncologist if my CEA was elevated. She always told me it was not elevated. Last week I requested a copy of all of my CEA results so that I could make them available to the 2nd opinion oncologist. That was also the first time that I had them in my possession so I got a chance to look through all of them. And it’s true: the result was always in the normal range. However, if you look more closely a pattern can be established. After my 1st surgery and during the 1st chemotherapy rounds the CEA was very low, nearly undetectable. But then immediately after that chemotherapy was finished it started to rise. It was 0.6 on September 2, 2008 which was my final day of chemotherapy. Then on September 26, 2008 it was 1.2. On December 9, 2008 it was 2.2. The CT scan that I had on December 2, 2008 is the one that detected the spots on my liver. So, anyway, I had liver surgery and 12 more rounds of chemotherapy. Right after my surgery my CEA level was 1.0. Shortly after that it had dropped to <0.5, which means it was below the detection level of the test. It remained at <0.5 all throughout the 12 cycles of chemotherapy. My 2nd round of (12 cycles of) chemo was from 2/23/2009 – 8/17-2009. On 8/17/2009 my CEA level was <0.5. On 11/3/2009 it was 1.7. On 1/8/2010 it was 1.5. On 3/11/2010 it was 2.5, its highest level yet. However, at that time my oncologist decided that it was safe to start pushing my scans out to every three months instead of every two months. In the face of a rising CEA I would have expected to be scanned sooner, not later. Now that my new mass is found would you like to know what my CEA level is? 12.8. Now it’s “officially” outside of the normal range. Keep in mind that the normal range for non-smokers is <3.9, so it’s true that all of my CEA levels were not elevated in the official sense. However, I do believe there is some value in noting that it had been rising again. My oncologist did not pay attention to that detail and for that I am highly annoyed. We are going to switch to the new oncologist and I have made him aware of this CEA bit and expressed to him that I do hope he pays better attention to the details.

One last thing about the CEA: Since it is elevated it’s almost guaranteed that this new mass is from the original colon cancer, so the need to do a biopsy is greatly reduced. So, I may not have it biopsied.

Now, about the Stanford GI Tumor Board: Last Friday I got a call that the GI Tumor Board for this week (the 23rd) and been cancelled and that I am now scheduled for the next one on the 30th. This week on the 23rd, however, the new oncologist will present my case to his tumor board and we will return to meet with him directly afterwards. I will see if his plan of attack has changed. I will still want the Stanford Tumor Board’s recommendations as well so I may not know definitively until next week what the whole plan is.

I will post any new findings here of course.

2nd Dr. Appointment Follow-Up

I originally had an appointment next week (Friday the 25th) with a second oncologist at El Camino Hospital. Yesterday at about 1:00 I got a call that there was a cancellation at 3:00 and I could come in early if I wanted to. So, I hurriedly finished collecting and compiling my records and then Dave and I rushed up there with a small booklet. I think the receptionist was impressed (astonished... amazed...) at the amount of records that I had possession of but was not at all surprised that they were all organized and easy to put into a chart.

So, we met with this 2nd oncologist yesterday and I'm sure we spent more than our allotted time with him. But he never made us feel rushed. He answered all of our questions and thoroughly outlined the course of action that he would recommend. And it goes like this:

1. Since it's been a nice length of time since my last tumor, he'd biopsy the mass to make sure it's still colon cancer and not some other form of cancer such as lymphoma. If it was something else then the treatment would be different.

2. He'd have a urologist place a stent in the partially blocked ureter to decompress the kidney. Right now my kidney is enlarged because it's a bit backed up.

3. Then I would have 12 rounds of chemotherapy. He would choose to give me all of the drugs I've had before. All 4 of them. We would substitute Xeloda pills in place of the 48-hour pump. I've just about had enough of the pump. For the record, he's never given anyone all of the drugs before. He said my case is unique. The other oncologist said I am "interesting". I didn't realize I am so different.

4. After the chemotherapy was finished he would then deal with removing the mass by using radiation or possibly the new Cyberknife. I think he's afraid that if he removes the mass first more will pop up. Plus if he leaves it in place he has something that he can keep an eye on to see if the chemotherapy's being effective.

So, that's his plan. We will still go up to Stanford next Wednesday to meet with the GI tumor board and there a team will come to a consensus and will tell me what they recommend. Then we will start making decisions. I think I will choose to have my treatments up at El Camino no matter what. The infusion area is so much more comfortable and private than where I've been going. Everyone was so nice up there. If only Dr. Chen worked up there because I have no problem with her. But if the treatment's the same then I will choose to go where I'm most comfortable.

Dr. Appt Follow-Up

I went to see my oncologist today. I already kind of knew what the results were. Officially here is how it reads:

1. There is a new 1.9 cm FDG avid left retroperitoneal mass consistent with metastatic adenopathy. This appears to obstruct the left mid ureter resulting in moderate left hydroureter and left hydronephrosis.

[This means there's a mass in a lymph node that's pressing on a ureter. It's causing the kidney to become inflamed. I've been experiencing lower left back pain for a while now, and this is on my left side. So I'm wondering if this is what's hurting and not my back.]

2. Postoperative left hepatic lobe without evidence for residual or recurrent disease. No evidence for recurrent disease near the sigmoid anastomotic site.

[This means there's nothing suspicious on my liver or my colon.]

And here's the PET scan image:

Do you see that really bright spot in the lower left image? That's the new mass. (By the way, if you click on the image a larger version should pop up.)

Dr. Chen said that she is referring me to the specialist at Stanford and my case will be presented to the GI Tumor Board. We go up there on Wednesday (a week from tomorrow) to meet with them and find out how they suggest we deal with this. It's possible that they may treat it with radiation or a new technology called "Cyberknife". Also she said I'll need to do a short round of chemo. Maybe 6 rounds instead of 12.

We also have an appointment with another oncologist to get a another opinion. We will see him next week as well. I feel like right now I need to at least look into and consider more options. I like Dr. Chen and I know that she is doing all that she can for me. But there is more to this battle than just the oncologist. I'd rather do chemo someplace else if possible, if everything else is all the same.

After we meet with the oncologist and the tumor board next week then we'll know more.

Preliminary PET Scan Results

Yesterday (June 9) I had a PET scan. The follow-up appointment with my oncologist is next Tuesday the 15th. Today, however, I had an appointment with my primary care physician for something completely unrelated. While I was there I asked him if he had the PET scan results (I requested a copy to be sent to him.) He did. And it’s not clear this time. I will get a copy of the report on Tuesday when my oncologist goes over the report with me, but what I got from it is that I have a mass in a lymph node that’s partially obstructing a ureter. This is a tube that connects the kidney to the bladder. There’s also a smaller one in a nearby node.

I will learn on Tuesday what they intend to do about this. I suspect I will have surgery to remove the nodes. I suspect there will be some kind of therapy or treatment to endure. I guess I’ll have to continue to expect this kind of thing. Right now I’m a little bummed out and annoyed. I’m glad I didn’t go back to work. I’m glad I’m being selfish with my time. I’m especially glad for my husband, David. He’s the best thing for me right now.

My Next PET Scan

My next PET scan is scheduled for Wednesday June 9th. I'll get the results on June 15th. I'll keep you posted...

Something to Brighten Your Day

Here's a little something I found in the backyard today. I wanted to share it with you to brighten your day. And to let you know that I'm still here. :-)

This rose is called "Legends". It's a Ruby red Hybrid Tea rose with "massive, full, & ruffled blooms". Also, the tag reads, "Monstrous buds & humongous blossoms of rich ruby red hold their durable brilliance from beginning to end. Immense petals (just one can cover a child's palm) lend a classical Hybrid Tea bud shape, slowly spiraling open to a ruffled whopper of a show-stopper. Large lettuce-like leaves of an unusual red-green color gracefully enrobe the long cutting stems - in perfect proportion to the flower. Who needs a bouquet? It only takes one prodigious posy to fill a vase."

Also the tag says that Oprah Winfrey was involved in the multi-year evaluation & final selection of the Legends rose. Woohoo!!

The Garden Today

Well we have had a rainy season. And I have to take time for my knitting boot camp. I'm not kidding about that. Anyway, I haven't finished sifting all the soil but I'm still working on it. I should be finished shortly so that I can get the other 2 boxes filled and planted.

So, here's the latest on my little garden space. Today I finished putting in the drip lines for the boxes that are up and running. I think the rain has stopped completely until November or so... so I had to get the water in because the hot weather is just around the corner.

Here's an overview of the garden today. I tried to take the best picture I could:
In this photo you can see my 2 baby blueberry plants.
This next photo is of my 2 "stone" boxes. The first one has two kinds of carrots. The 2nd one has lacinato kale (just about ready to use), celery (looking good!) and a nasturtum. The lettuce is done. If I can find a shady spot then I can start some more.
This photo is of my first raised wooden box. It has tomatoes, basil, a parsley plant (I also have a separate herb bed outside the garden), some French marigolds, some borage volunteers. Also there's a small beet patch on the far end. I also added a row of carrots in between each tomato plant. They are just now coming up.I won't be leaving all of those solar lights in the box. I put them in there to keep some plastic sheeting off of the lower plants. It got cold here for a couple of nights last week. Each box will have 4 of the lights for a nice effect.

I just got some 8-manifold bubbler heads today. I really like them because each outlet has an individual control valve. You can shut any one of them off or adjust any of them individually from 0-30 GPH. Very nice.

So, now I either have to go sift some soil or do some knitting homework.

The Most Important Thing An Overnight Guest Can Do For Me

If you are ever an overnight guest at my house, the single most important thing you can do for me is to strip the bed linens off of the bed, including the pillowcases. I will never understand why guests make the bed. I mean, am I to leave them on there for the next guest? If you do one thing, let this be it. Just toss them on the floor. This will make me smile.

Cleaning the House

When I met David he had housekeepers who came into his house every two weeks (at that time) to clean it. When I joined him and we got Theo we changed that to every week. And until a few weeks ago we continued to have someone come clean the house. Our latest housekeeper was Lupe. And she did a fabulous job and never complained. While I was working or going through chemo it made sense to keep her on. But I haven't gone back to work yet and haven't been on treatments since August so I decided to try to clean the house myself. This saves us $95.00 per week. That's a good amount of pocket change.

So far so good. For several weeks now I've been doing the dusting, mopping, wiping, scrubbing. I generally set aside a day for it so it just gets done and I can dedicate the rest of the week to everything else. I think I'm doing a pretty good job. Before I met David I always cleaned my own place. Granted they were much smaller but a bathroom is a bathroom... a floor is a floor... it's all the same. Just more of them. So, I take longer. But it's really no big deal. Now I don't have to do the mad rush every Wednesday night to de-clutter the house for Lupe. I know where everything is at every moment. (I don't like for things to get moved.) Overall I don't mind cleaning my own house. If I return to work or if I return to treatments then we will see if Lupe's still available (I hope she is - she did a great job) but for now I'll keep doing it myself. In a way, I'm bonding with my house.

Garden Prep Detours

I haven't been sifting soil this past week at all. The weather was absolutely perfect for it but I had other obligations. I am in the middle of an 8-month long knitting boot camp which meets once a month. Since the last class I had been working pretty non-stop in the garden, pausing only to clean the house, do laundry, or go to doctors appointments. So I didn't work on my homework until last week (we meet again tomorrow, Tuesday the 13th.) I spent many hours doing the knitting homework and will go upstairs to dedicate the final 30 minutes needed to prepare for tomorrow's class. After tomorrow's class you can again find me in the garden (the rain will be gone - yay!) and I should finally get the remaining soil finished this week. Then I will know how much to purchase and then I can finally get the garden going in earnest.

I will also try to do the knitting homework throughout the next month.

So, that's my boring update (excuse) on why I haven't been posting much lately. Soon I will tell you about Justin, our San Jose Giants baseball player who is living with us for the season.

Still Sifting Soil...

Not done yet! And it's been raining. This week should be beautiful but I have to work on my knitting homework for my class next week. I'm WAY behind.

Also I will have to tell you about the San Jose Giants baseball player we will have in our home for a few months. Don't let me forget!

Sifting Dirt

Wow. I wish I had time to sit here and compose something witty. But I'm outside in the garden sifting the rocks out of the dirt in the raised beds. All day. I'll see you in a week or so with pictures.

So, I'm Officially NED for One Year!

Hi all,

I just want to share my good news. Long story short (to update any new readers)... February 2008 I was diagnosed with colon cancer (at the ripe old age of 37.) I had surgery and 6 months of chemo. Then it was also found in my liver in December 2008. January 2009 (just over a year ago) I had surgery to remove the new tumors and did another 6 months of chemo, which was completed last August. I have had alternating MRIs and PET scans every 2 months since then, the latest being yesterday. The MRI that was done yesterday confirmed that there are no tumors at the moment.

Do you know what a milestone it is to be confirmed disease-free after an entire year? It is something to shout from the rooftops!

(Oh, by the way, NED = "No Evidence of Disease")

Not Much to Update...

...which is a good thing!

Well, I do have an MRI next week so I'll post those results when I get them.

I have been keeping very busy not getting much done. At least it seems that way, but I know I'm busy every day because my feet tell me so, and I haven't been doing anything leisurely during the days. My foot still hasn't healed from my November 6th surgery so the doctor prescribed a bone growth stimulator machine, for which insurance is paying 90%. Thankfully. It's an ultrasound machine that I use every day for 20 minutes and it's supposed to stimulate the bone to heal using voodoo magic. At least that's what the doctor said.

I never did get the greenhouse, so I have found ways to accomplish what I want inside the house, in my kitchen. Luckily I have a large expanse of counter space behind our sink in a bay window. And I have learned that maybe it's a good thing to start the seedlings in the kitchen where I see them every day. They are coming along wonderfully and I haven't lost any of them. Out in the garden, "out of sight, out of mind" perhaps could have played a role in the demise of some seedlings so it's probably for the best that I can see them every day and tend to them. That window does not let in enough light so I had to put in a grow light to keep things moving along. It looks kind of funny but will be taken out when seed starting is completed.

Here it is:

That's actually a garment hanger that the lights are hanging from. You know, the kind you'd put in your closet or laundry room to hang clothes on. I looked all over for one of those stands that you hang grow lights on. Even the place that sold me the grow light did not sell stands. And anyway they probably would have been pricier than this garment rack. It was only $20.00 or so. I have it on its shortest setting and it works. As the plants grow taller I can raise the lights bit by bit by moving the s-hooks up the chain. We had an extra shelf in the shed that is the exact stain and color of our kitchen cabinetry, and it actually happened to be the right size, so we added it to make a nice little platform for the plants. Otherwise I would have had to deal with the 2 cross bars on the bottom. It looks nice with the cherry shelf.

My knitting is coming along too. At the moment I'm not working on any project, so to speak. I am attending a knitting boot camp and the assignments are to make little swatches using different techniques, and the goal is to expose me to the experience of doing all of the techniques so that when I do make something more complicated than a stockinette scarf I'll have experienced pretty much everything at least a little bit and I won't be intimidated by it.

Speaking of the knitting assignments, I'd better work on some of that today. Our next class is next Tuesday and I have some things to complete. It's a rainy day today so I should be able to get some of it done.

Off I go...!

The Beginning of the 2010 Garden Season

Well, it has begun. For the rest of the year I will have dirt under my fingernails. Here's what I've done so far: I pulled up all of the irrigation from last year and re-laid out the garden beds. Some of them were OK but some were just too wide. I can comfortably reach 1 1/2' into a bed, so I laid out all of the beds to be 3' wide, leaving 1 1/2' - 2' paths in between. We did set aside some space for a nice 6' x 8' greenhouse but I'm not sure I'll be able to get it. Last year Costco offered a coupon for $300.00 off and I was expecting the same this year, but so far I haven't seen the discount. But I have a plan B, and it may work out even better. What I have done is started my seedlings in my AeroGarden. I was hoping that by the time they were ready to transplant into little pots that I'd have a greenhouse. However, since that didn't work out, I have decided to get a 4' long grow light to put them under, and they will sit in my kitchen behind the sink where there is just enough room for that. What makes this potentially better is that I'll be able to keep an eye on the seedlings every day. In the greenhouse they might dry out but in my kitchen that won't happen. So, the space where the greenhouse was going to go can now become the home of one of those cheap plastic storage shed things that you get from a home improvement store. I just need someplace to keep my bags of soil, gloves, gardening tools, etc. I think this will work out very well.

Here's what my AeroGarden looks like:

So, here's where I am now: A month ago I started some kale, lettuce, mustard greens, spinach, and celery in the AeroGarden. Yesterday I transferred all of the seedlings except for the celery and the smallest 2 kale into little 6-pack seedling pots. Here are the seedlings:For now they are sitting in front of the sunniest window that we have but the truth is they won't get enough sunlight. And they will all grow sideways to reach the light. The grow light has been ordered and hopefully it will arrive soon.

Today I started some more seeds in the AeroGarden: 3 kinds of tomatoes and some beets. For the 3rd year I'm going to try beets. Hopefully this will be my successful year. The last 2 years they have been direct seeded and just never did well. So this year I will grow seedlings and transplant them when they are stronger. I'll see if that makes a difference.

Very soon, hopefully later this week or next week, I need to go and direct seed the carrots into the garden. I have decided to plant some normal orange ones as well as some "Atomic Red" carrots. Plus I'll see if I have any yellow carrot seeds left over from last year but I think I planted them all.

Open Letter to Everyone Who Forwards Viral Email

Dear Family/Friend/Loved One/Acquaintance,

When you forward an email to me that was forwarded to you, and you include, say, 24 other people, now 24 other people have my email address. And while you may trust those other 24, you don’t know the 25 people they may forward it to, and each of those 25 people may forward to 25 more. At the end of the day, hundreds or thousands of people could have my email address that I don’t know. And perhaps one of those people works for a company that collects emails for spam. Or maybe one has a virus or Trojan horse on their computer that scans emails such as this looking for email addresses to add to a spam database. So, anytime you are sending an email that may get forwarded, you should always use “Blind Carbon Copy” (or BCC). Don’t use the regular “CC” or "To". You have to use the BCC because then all of the email addresses will be hidden from the other people.

That said, I never, ever read emails like these. You never know when one might contain an attached virus. And frankly, I just don’t find them interesting. So, they get deleted right away. My request to you is: no matter what you choose to do in the future regarding forwarding emails that you didn’t write, please don’t include me.

Anytime you want to write a personal note to me, feel free! Those I welcome.

Love,
Laurie

MasterChef Tryouts

So, last Thursday I was shopping at Sur la Table in Los Gatos for some soufflé cups for Friday night's dessert (a yummy Meyer Lemon Soufflé). So, while I was there, I looked down on the counter and uttered, "you've got to be kidding me." What did I see? A stack of little cards advertising open casting calls for Chef Gordon Ramsay's new TV show called MasterChef. If you want to see the details, follow this link: MasterChef auditions. Well, I immediately thought that I could try out to be on the show, seeing as how I love to cook and am always trying to improve my skills. Also, I have been considering going to culinary school to learn some professional skills and I thought being on the show might be like a crash course in culinary school. I picked up the card and checked out the details when I got home. The requirements were a bit daunting: Bring a dish to plate and serve to one taster, bring a photo of your dish, bring a photo of yourself, and bring the completed application (about 10 pages long). And the casting call was on Sunday in San Francisco.

I mulled it over and decided on Spring Rolls because I felt they would hold and transport well in a cooler for several hours. I was more stressed about the answers to the questions. The hardest ones for me were how my friends would describe my personality, and what would they say are my best and worst qualities. I got some feedback that I'm a bit shy and reserved and sometimes don't know what to say. And this is true. Also, I guess one of my flaws is honesty because I think this is why I was passed up.

Sunday morning I got up and decided to do this for real, so while I went to the store to get the ingredients I needed, David went to Fry's to pick up a printer. Our photo printer had died a few weeks earlier. I rushed home and assembled the Spring Rolls (which, by the way, I had never made before.) :-O

David and I then rushed up to San Francisco in order to stand in line for a few hours in the cold. Luckily it wasn't raining. I finally made it to the front of the line and went along with my group to the "audition" area where I quickly plated my dish for the taster. He came around and asked me, "So, what do we have here?" "Spring Rolls made with shrimp, carrots, cucumber, and avocado. Served with a sauce made of mayonnaise, sesame oil, rice vinegar, wasabi paste, and chopped cilantro." Taster: "So, where did you get your shrimp?" Me: "I got it at 99 Ranch Market this morning." Taster: "How did you cook your shrimp?" Me: "I boiled the water, added the shrimp, turned it down to a simmer for a couple of minutes then took them out of the water. Then I tasted one to make sure it was done." The taster took a swipe of the sauce with his pinkie and took a bite of the Spring Roll and said, "Very fresh. Very good." Then walked away.

After that, a lady whom I assume is a casting person came to ask me questions. That's where I blew it. She asked me why did I decide to come try out for the show, what are my culinary goals, and how would my friends describe my personality. I said I felt the show was made for me because I love to cook and am always trying to improve my skills and gain enough knowledge and experience to stray away from recipes. I said that I considered going to culinary school but not to be a professional chef. Instead I wanted to have professional chef skills when cooking for my family and friends. And I said my friends probably see me as shy and reserved. Hmmm... I guess they don't want shy and reserved people on TV.

Anyway, the taster liked my dish! I am glad that I was able to see a glimpse of the underbelly of a cooking TV show. If it comes around next year I think I'll be better prepared with my answers and tell them of the energetic, adventurous side of me as well.