Honey, Sugar Sugar ...

I kept meaning to update - the June mammogram was clear.

I did try the tamoxifen for six weeks. I hated the side effects, so I went off it. I'm glad I tried it, so I'd know. And I'm also very glad to NOT be on it, and to have a choice on what I think is best for me.

I've been reading a lot about alternative healing, most of which is diet. I think there's something to it. One thing that I keep reading over and over is that cancer cells feed on sugar. Damn. I love sugar. It's like I'm an addict. I've been attempting to cut back. Some weeks are better than others. Hmm ... that does sound like addict talk, doesn't it?

Welcome to 2014

First things first, the MRI results were clear. 

I haven't started taking the tamoxifen. I know many people disagree with me, but frankly, it's not their life, nor their body. I have weighed the risks and benefits, and I'm at peace with just doing my 6 month check ups. Maybe something will change my mind in the future, but again, it's my choice. I didn't make the decision lightly. 

So here I am, in a health holding pattern until June when I have a mammogram. 

Otherwise, nothing is on hold. Juggling work and full time Graduate school can be a bit overwhelming at times, but I'm really enjoying school. I have at least two more years of it, so hopefully I'll still be enjoying it by the time I graduate! 

Thanks for stopping by. 

OX,

Miriam

The Answer to .... Life! The Universe! Everything!

"Forty-two," said Deep Thought, with infinite majesty and calm.” 
― Douglas Adams, The Hitchhiker's Guide to the Galaxy

Ah, birthdays. Let's hope 42 is a magical number!

I had a good visit with Dr. Wilson (my oncologist) last Monday. He would like me to have another MRI in December, and another in June. He feels I've had enough mammograms/X-Ray exposure for the year and would like to avoid more, unless it's necessary. He also said that I shouldn't need to visit him for another year.

I inquired if there's anything more that I should be doing, such as changing my diet, and he said that I'm a healthy weight, and I exercise, and that those are enough. I shouldn't have to load up on kale (although I do enjoy it) or avoid dairy (which I do tend to avoid, unless it's cheese - man, do I love cheese), or anything like that. It was an interesting conversation. His thoughts on cancer diets are that there is not enough data to prove or debunk them. Sure, I should avoid refined sugar, but so should everyone, for many reasons.

"People who tell you what you should or shouldn't eat are basically trying to blame you for your cancer. They want to make sense of it, so if they can pin it on your diet, then it's a way to assure themselves that they won't get cancer. 'You didn't eat enough vegetables, but I eat a lot of vegetables, so I'll be okay. You eat sugar, and I don't, so I'll be okay.' Let me tell you something, Miriam. You didn't give yourself cancer. This isn't your fault. Sometimes bad things happen to really good people." 

And that, my friends, is why I adore Dr. Wilson. It was a very nice birthday gift to hear this. Not that I think this is my fault, but it's cool to hear, anyway.

Here's the latest question mark - to take or not take Tamoxifen. I have the prescription. It's sitting in the medicine cabinet. Haven't opened the bottle yet. I keep thinking there's going to be a perfect time to try it out. I'm to try it for three weeks, and if I don't like the side effects, I can stop. (Sounds like an addiction, doesn't it? "I can stop whenever I want! I'm in control, I swear!"

Thanks for stopping by! I should have the MRI results mid-December. (And now I have Jesse of Breaking Bad in my head, "Magnets, bitches!"

Who loves ya, baby?

"Love is my gift to the world. I fill myself with love, and I send that love out into the world. How others treat me is their path; how I react is mine." -Dr. Wayne Dyer

In January, I started a gratitude journal. I attempt to write in in Monday through Friday, and do most days. First, I write my 3 goals for the day, and then I write what I'm grateful for. 

The goals are not a "to-do" list. They are more along the lines of "Be gentle with myself." "Be kind, but firm." "Let go of perfection." "Focus." "Practice calm: Calm leads to calm." Sometime it's just one word. It's a nice way for me to start my day.

Gratitude has been on my mind a lot these days. I was flipping through my journal and found these entries from February, when this journey was barely beginning.:

2/19/13 

1) health 

2) school 

3) forgiveness 

Grateful for my amazing friends. Grateful for seeing the good in people instead of believing the worst. Grateful for my very loving husband. 
We all have a story we tell ourselves so that we can get by. It's only our truth. It's not anyone else's reality.

2/20/13

1) healthy emotions

2) health 

3) creativity 

Thanks for the perspective, Universe. Grateful for kind doctors and nurses. Grateful for great friends. Grateful for perspective and paradigm shifts. For Alan, who is my rock and I will always have him at the to of my grateful list. 

And then - I wrote this: 

What if this was it? What if life will be changing drastically and be shorter? What will I change? How can I make every moment matter? How do I stop being me? No, I like being me ... how do I be the best me I can possibly be? 

That's a big question - and I've been working on it this year! Some of it is letting go of people who don't have my best interests at heart. I have a hard time letting people go who don't love me back, but I'm working on it. Slowly, with care. 

I reached out to several friends recently, whom I haven't seen in quite a while. Two responded so positively and full of joy that it lifted me up. We're working on finding time to see one another soon, even though we live very far apart. Two other friends, who live close by, didn't respond at all. And while it hurts, how they treat me is their path. My only response is to love, and let them go. Carrying bitterness or anger won't help me. Fighting for these unresponsive friends to stick with me won't cure me. Those who can stick by me, will, and have. And for that, I am grateful.  

I'm grateful that I'm working on being the best me that I can possibly be. I'm grateful to you for sharing my journey with me! 

Celebrate the Negative

Genetic test results are in ... I'm negative all around! No BRCA 1 or 2, no genetic anomalies or mutations! Whew!

I'm not very good about celebrating when I have good news, so I'm hopeful to find some time soon to celebrate my negativity.

Next step will be determine what I want to do. I'm not very excited about taking tamoxifen. To take a chemical for 5 years, with PMS-like side-effects, what a joy. Will mull that over some more ...

Dish two: Meh

This looked promising! 

Here's the aftermath of the triple citrus juicing. Limes, oranges, and a lemon from our tree.  

 It sure looks pretty. The mint sprig really makes it. It didn't taste so great though, as I overcooked it. 10 - 15 minutes, not so much, as I checked it around 9 minutes and the internal temp was about 30 degrees too high. Rubbery cod is not a delight. I'll try this one again though, as the citrus/ginger sauce was yummy. We served this with the Napa cabbage salad, which was even better a couple of days later. 

Maybe next time I'll swap the cod for halibut. Here's what the the author (Rebecca Katz) has to say about it:

Halibut: Anti-inflammatory. The omega-3 fatty acids found in halibut have great health-promoting properties. *could reduce the risk of cancers including non-Hodgkin's lymphoma, multiple myeloma... may extend to common forms of breast cancer (among many others)

Hey good lookin' whatcha got cookin'?

The genetic testing was approved by my insurance! Shocking! I had blood drawn on August 30. Results take 3 - 4 weeks, so while I'm waiting, I thought of a new project. Yeah, I know, like I don't have enough on my plate, but I do need to eat.

I'm not going to be ambitious enough to pull a "Julie and Julia" but I thought this might be fun. Please forgive my photography. I am obviously not a food journalist, and next time I plan to take a photo of the wreck I made of the kitchen. There was shredded cabbage everywhere for this first recipe, but alas, I had cleaned it up before I realized how fun it would be to show the mess.

I bought this book last year, when a friend was diagnosed with cancer. I sent her a copy, with the idea that she'd select something, and I'd make it and bring it to her.

So it turns out she was so ill that visits were not recommended, and she was barely in the mood to eat anything. (She's in remission now, and doing wonderfully!) I never made anything from the cookbook, until tonight.

In progress - I added mushrooms, because they were in my Farm Fresh to You box, and I was worried they weren't going to last much longer. I'm not sure if mushrooms are good for cancer, but organic produce probably isn't going to make it worse, right?

And yum - here's the final dish! I know, I know, you're quite impressed by the artfully placed cilantro. 

Check back soon, maybe I'll attempt another dish! Or maybe I'll have genetic testing results first! Or, check back to see if Alan liked this dish. He's taking some to work tomorrow. Stay tuned.

Save the drama for your mama

Yup, it's true. The past two weeks I've been crying at the drop of a hat. Which is quite annoying, as it's happening on Bart, and at work, at the grocery store, and well, pretty much everywhere. Ugh. So NOT cool. It's over such small things, too. But the reality, I know, is not small. The reality is that grief has it's own timeline. April and May were go-go-go. June was finishing up summer semester. July was big projects at work and a promotion. August is ... well, I guess August is time for grieving to begin in earnest.

Over the weekend we attended my in-laws 50th wedding anniversary. It was very lovely, and they are incredibly sweet people - it's no shocker that they're celebrating their Golden Anniversary. There were group photos taken, one of which was "just the kids" with the parents, so Alan, his sister and the granddaughter were called over to have a photo taken with the bride and groom. I started to walk over too, but then realized that my name wasn't called. Which is fine, I mean, I'm not their child or grandchild. I'm not blood. And that's okay, but I was surprised at how sad I was about it. Why was I so sad? It took me several days to realize why ... I'm no one's child anymore. No one can claim me as their daughter. Even 18 years married into a family doesn't actually make me family. My mom will never beckon me over for a family photo. I'll never feel that unconditional love again, and it breaks my heart.

(Check out my mom's frustrated look at me, her darling, screaming baby. Yeah, that's some unconditional love!)

Genetic testing: Step 1

On August 2, I arrived at the Stanford Women's Cancer Center for my genetic consultation. I wasn't feeling any stress as I arrived (other than the stress of being late, as I didn't factor in the construction around the hospital to my commute time). As I stood in line, waiting to check in, I looked at the women around me, my fellow patients. Many looked like me, in good health - you'd never know we have some mutant cells. One woman was probably in her mid-30's and held a baby that couldn't have been more than two weeks old. Another woman was probably younger than she appeared, with her bald head, walker, and a huge smile. As I approached the receptionist, I suddenly felt overwhelmed, and burst into tears. WTF?

A few minutes later when the male nurse escorted me to the examination room to take my vitals, he could see that I was upset. He said he wasn't going to take my blood pressure, as he knew it would be falsely elevated.

The meeting itself went well, and I calmed down as I talked to the three genetic consultants. We spoke for 45 minutes about chromosomes, genes, autosomal dominant inheritance and cancer biology, as well as my family history of cancer.

They are recommending that I get tested for not only BRCA 1/2, but TP53, CDH1, STK11 and PTEN. This is known as a BRCAPlus panel. Each of these genes corresponds to a hereditary cancer syndrome that is know to cause identifiable clinical features and family histories and confers a significant lifetime risk for breast cancer.

Because my family is so small, there's not much to go on, so despite the lack of breast cancer (except my great-grandmother - my maternal grandfather's mother - she died of breast cancer in her 40's) they are strongly recommending that I move forward with testing.

I am in agreement, but we must first jump through the HMO hoops, and submit the recommendation my insurance to decline or accept. Either way, I will get the testing. Now, I await a phone call so that I can schedule the blood work.

Just an interesting note - I asked if Angelina Jolie's announcement had made an impact on genetic testing at Stanford. And, indeed it has. Ladies, if you want to get tested, you can't get an appointment until January. And here I thought booking in June for an August appointment seemed a long wait!

Once more unto the breach dear friends, once more

Monday I had the biopsy on my right breast. It was easier this time around. I opted out of the anti-anxiety meds, and went in non groggy onto what I call the "hydraulic lift".  You enter a room with a big radiation sign on the heavy door, where you climb stairs to lay face down on a table, with your boob hanging out a hole in the center. Then, they raise the table, so that if you were to sit up, you could touch the ceiling. Like a mammogram, they press your breast between plates, and take many x-rays as they proceed. They give you a local, so it's not painful, but it's uncomfortable, just because of the awkward way you have to lay on the table, at an odd angle with one arm up, hips twisted for the Doctor to have a better angle.

The process I've had both time for extracting the tissue is called a vacuum-assisted device (VAD). Vacuum pressure pulls the breast through the needle into the sampling chamber. Without withdrawing and reinserting the needle, it rotates positions and collects additional samples.

As last time, a small titanium marker is left in the breast, so that the tissue spot can be located again, if needed. As my loyal fans know, the marker was needed last time for the lumpectomy on the left side.

After the procedure, you have another mammogram to ensure the marker is visible. And then, if you have an awesome doctor, such as Dr. Jain, she gives you a big hug, and poses for a picture for your blog.

Okay, so the results! Dr. Jain called today to let me know that it's all good news! Nothing but a calcium blip, no cancer!

Unfortunately, all of the stress is taking a toll, and I returned to see my RN today to be tested for an ulcer. Oh summer tomatoes, coffee and garlic, I miss you already.

Not much to report, so here are some photos instead

I hope you never have to experience the inside of an oncologist's examination room. It's quite boring.

But how nice that my Oncologist was the 2012 patients' choice recipient. I wanted to do a scene from "Elf" and yell, "CONGRATULATIONS!!!"

Nothing to report. Dr. Wilson confirmed that I should get a biopsy on the cyst on the right side. Then I'll meet with him again in July after the biopsy results are available. Hopefully Dr. Jain will be correct and it will be nothing of concern.

Lovely little moments

“Choose to be optimistic, it feels better.” 
― Dalai Lama XIV

Well put, Dalai Lama!

Last week was full of wonderful happenings. I met with an old friend I'd not seen in years, and she shared with me her journey with LCIS. Lumpectomies, Tamoxifen, etc. It didn't sound so scary.

I spoke with a specialist at Breast Cancer Connections and she emailed me a slew of information that I'd not been able to find online or at the library.

A good friend's sister was in town visiting, and she happens to be a genetic counselor, so I was able to get another professional perspective on my situation.

At the end of the week, I met a friend's mom who is a breast cancer survivor, and her diagnosis was much more serious than mine. She's doing wonderfully, and offered support.

A relative who I thought was lost to me forever rejoined my life.

Many lovely moments to be thankful for!

Nothing to see here, move along ... no, wait, maybe there's something to see here

I had the mammogram and an ultrasound on my right breast today. Dr. Jain said that it didn't look like anything abnormal, but that because I'm now high risk for developing an invasive breast cancer, she'd like to do a biopsy on the right breast. Oh joy. The biopsy hurts more than the lumpectomy, but at least the recovery time is quicker.

I see Dr. Wilson (the Oncologist) on Wednesday, and then July 8th I'll have the biopsy.

I'm not crying, I have something in my eye.

I knew it was going to happen, it just took longer than I expected. My mom visited me in a dream last night.

I was in a theater, in the dark, and the lights came on, so I guess the play had just ended. I stood and turned around and my family was in the row behind me, still seated. My mom had been sitting behind me the entire time.

I said to her, "I've been waiting for you. I thought you were gone."
She responded, "No. I'm not gone. I'm always here." 

And then I woke up, but desperately tried to go back to sleep, to the dream. I wanted to talk to her some more. 

Today was hard. It feels as if I am finally starting to grieve. So many people tell me that I'm strong, but I don't see what they see. I just don't want to be that mopey person that is depressing to be around, so I am trying to be strong, and humorous, but today I just need to cry and possibly, admit that I'm really quite frightened about everything going on with my health. Today I am so grateful for Alan and his hugs, and for not having to be brave around him. I'm grateful for a beautiful day of sunshine. 

Results from MRI

Ambiguous, as always:

Dear Ms. Home:

Your MRI breast w wo contrast bilateral performed on May 22, 2013, shows the need for further evaluation. The Radiologist has recommended a right breast follow-up diagnostic mammogram.

My guess is that there's LCIS in the right breast as well. And since it doesn't show on a mammogram, this will be another exercise in futility. This whole business is tedious. I can see why people might ignore their health issues.

Everyday I'm shufflin'

I had the MRI last Wednesday. No results yet. It's not like on TV were they show you immediately after.* I'll discuss the results with Dr. Wilson in a couple of weeks.

I didn't realize that I was going to have to be injected with something.** If I have to have anything done involving my veins, I prep for it by drinking a lot of water the night before, as well as possibly work out a little. My veins are very tiny, and as such, the nurse had to make 4 attempts before getting one to work out. But that was the worst part of it. And the nurse was really nice, so I don't fault her for my teeny tiny veins. She asked the technician if we needed the injection, and the technician responded, "Yes. It's the money shot."

After that response, I was kind of in love with the technician. What can I say? I'm a sucker for a good sense of humor. She helped me into the tube - face down with boobs in holes, face in a hole, arms above head, like a massage table. I imagine that because I was face down, it didn't feel as claustrophobic as it could have.

I had ear plugs in, and giant headphones on. The technician talked me through every test, but first she tested the mic to be sure that I could hear her. She let me know that she'd be playing some "soft rock". So this is the first line I hear: "I've got a bad disease". Um, maybe not the first line you want to hear when in this situation.

Fortunately the next song was Party Rock Anthem. Except that it made me want to dance. No dancing allowed in the tube. Boo.

In other news - I thought I may as well make some money to fight cancer, so here's my Team in Training fundraising link: http://pages.teamintraining.org/sj/nikesf13/mhomet


*Why can't life be more like TV?
** "something" was gadolinium. Rare earth element. Kind of cool.

Interesting Read

This is a great article about DCIS. It's not the same about LCIS, but it applies:

http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=all

MRI is scheduled for next week.

Now With Twice the Options!

I met with my Oncologist today.* Weird. I have an Oncologist.** Byron Wilson, M.D., not to be confused with Brian Wilson. Alan and I liked him very much. Perhaps I liked him more because he said that I have nice breasts (not in a creepy way). Anyhooo ... I am sure you'd like some actual information here. You don't just stop by for a giggle. It's not all boobie tassels.

Dr. Wilson expanded the options:
1) Do nothing. Walk away and pretend this never happened. I might just get away with it. (Not recommended)
2) Close surveillance. MRI followed by a Mammogram six months later, and self exams
3) Start taking Tamoxifen as well as close surveillance
4) Bi-lateral Mastectomy

He explained so much more about LCIS. It was more than I could find online or in books. It's not as scary as I thought. You hear the word "cancer" and you naturally have a bad reaction.

I have plenty of time to make a decision, and not to worry, I will not choose option 1.

My next step is to have an MRI, which should happen the end of May. I will also be seeing a genetic counselor. I did the 23andme.com genetic testing, which showed I don't have the BRCA gene, but Dr. Byron would like to confirm this.

Thanks for checking in! It's nice to have some somewhat good news on what has been a difficult week.

*My mom was supposed to visit her Oncologist today too.

**My mom could never say "Oncologist". She always put in an extra "o": "OnOcologist". Or she'd just say "Cancer Doctor."

Side Tracked

I took a little break from processing everything and just didn't think about this for a week. Feels a bit like I was in a dream state.

Then this happened. My mom was in the hospital, being treated for pleural effusion. I was to call her Doctor this morning to find out next steps, but instead I got a call. Her heart had stopped. They tried for a long time to bring her back, but she was gone.

My mom would pray for me every day. I'm not a religious person, but now that she's gone, I miss that already - knowing that someone was praying for me. My heart is breaking. I don't care about my situation anymore. I just want my mom.

All or Nothing

You've got to ask yourself one question: "Do I feel lucky?" Well, do ya, punk?

Hoo Boy. Met with Dr. O'Holleran today. The tricky thing about having a rare cancer is that there's not a lot of research out there. What little research there is, points to the fact that every year with LCIS your chance of developing an invasive breast cancer increases.

Since I've had this cancer a bit longer than originally thought - probably a few years (it's slow moving, so how could more than half my breast have it, otherwise?) what are my odds? Do I have it in my right breast too? Maybe. Maybe not. Since it doesn't show up on mammograms the only way to know is to do a random lumpectomy or an MRI.

Next step is to talk to an oncologist. I have a referral and am waiting for a call back tomorrow to schedule a future appointment.

The options seem to be: 1) Do nothing. Hold my breath and hope that if I do get an invasive breast cancer that it is caught right away. 2) Bi-lateral mastectomy.

Other things I am considering: Get an MRI. Consult with a plastic surgeon re. breast reconstruction should I decide to go forward with a bi-lateral mastectomy.

Other things to ponder - if I do have a bi-lateral mastectomy followed by reconstruction, I can get tattoos for nipples. What amazing designs could I get? Alan has already nixed smiley faces and kittens. Harrumph.