Saturday, August 27, 2011

Chemo Calls My Pillow

Chemo calls my pillow,
Not much I can do.
Choices to make.
Decisions, thoughts of you.

Physical limitations,
Around every turn,
No pool, no meat,
Events skipped, I learn.

What do I skip?
Navigation is key.
Disappointment imminent,
Pains hearts, daily.

Gets to my soul,
Guarded and fair.
But happy reflections and hope,
Conquer sadness, in there.

It is the moments I fight for,
Surface thoughts so true,
Managing frustration,
Grieving, anew.

Positivity, so critical,
I banish sad thoughts.
Faith, hope and trust,
Tying their knots.

My friends lend affection,
And my family is my wall.
Protecting and reminding me,
It is OK to fall.

Into a sleep that is so needed,
A rest that is well deserved.
As I fight off this monster,
Called cancer, absurd.

Tuesday, August 23, 2011

I Still See Me in the Mirror (even with a shaved head)

Two days ago, my friend Ally shaved my head. My hair had reached a point where it was falling out unprompted and my hairline and the growing bald spots on my head were not hidden well with scarves or creative hair styling. So, I was done with it.

Now, I am nearly bald. Last night, I was relieved when I looked in the mirror and just saw 'me'. Smiling at my reflection, I saw the same rosy cheeks, smiling eyes and crease across my nose. My skin looks mostly the same color (chemo tends to change skin tone a bit) and my topaz earrings shone brightly, no longer impeded by hair. A big change from nearly two years ago, when my first glance at my shaved head screamed, "cancer patient". And the hats and head wraps made me feel even less attractive.

Instead of covering my head up right away like I did last time, I have been avoiding wearing hats around the house. Eventually, after the kids and me are more used to my new look, I may even venture out in public without covering my head. I am not sure if it is because I am feeling brave or because I am bored with my hat collection. Either way, I know the first time out of the house will be hard...but maybe I will like it.. Who knows? I have one nice looking head, after all. I am lucky in that respect.

Admittedly, brave or no, there will be times where wearing a wig is most appropriate. On Wednesday, I am taking my old wig to my hair dresser for some re-shaping. Steve is pushing me to get a real hair wig...and I am beginning to believe that is the way to go...especially after talking to Ally. I just wince at the price a bit. That, and I hear that the upkeep on them is difficult. As usual, I have a lot to learn and have added to my task list some research on real hair wigs. Just what I need, more on my task list.

Yesterday, I had chemo. All went well. However, due to the fact that they premedicate me with a steroid before my Taxol, I find that the night after chemo I do not sleep well. So, I woke up at 4:00 a.m. this morning for no apparent reason. I managed to procrastinate writing in my blog for a couple of hours by playing Words with Friends, entertaining myself of Twitter and catching up on other blogs that I follow. I really enjoy all three of those activities, by the way. My friends on Twitter have a unique way of lifting my spirit, especially. Sometimes, we do not even correspond...I just love their positive spirits and funny posts. (Facebook friends, I love you are just not awake at 4:00 a.m.!)

Next week, I have chemo again, and then a week off. I am finding that chemo is not my focus, which is great. Instead, I am revelling in the last days of summer with my kids, admiring the way they are growing and maturing. I even have them emptying the dishwasher and helping me pick out foods at the Farmers' Markets. Our time together is precious. So very precious. Steve is jealous, but turn about is fair play, right? He is a teacher and always has had a month off with the kids during summer, while I slave away at the office.

My brother and sister-in-law will be in town this weekend for their friends' wedding. Seeing Darin and Kelly always make me smile. I can hardly wait to show Kelly, who has a marvelous green thumb, how our organic garden is growing! It is so fun to go out and grab my own basil and cilantro to add to my raw food dishes.

As I am beginning to ramble, I will end this now and prepare for the busy day ahead. And when I look in the mirror this morning, I think I will even put on a little make-up...because that is what the pre-metastatic cancer Marsi would have done. Then, I will look even more like 'me'. And when I get really brave....I will share some pictures here...Happy Tuesday, all!

Sunday, August 21, 2011

Orchid by my Bedside

There is an orchid by my bedside,
Purple, tall in stance.
Gracefully smiling at me,
Bringing joy with each glance.

A gift from a neighbor,
That I hardly know.
A gift so timely,
On a day, so slow.

Slow in stolen moments,
Where I still have my hair.
Now thinning so effortlessly,
With each breath and without flair.

With each movement,
Another hair falls,
Silently to my shoulder.
Resting and uncalled.

"Let it be gone!"
Is what my brain wants to say,
My heart weeps alone,
That it has happened this way.

A cancer patient again,
Nothing tells more,
Than a young, bald head,
Hat covered and adorn.

At least chemo is working,
And the hair will grow back.
Justification comes easy,
Helps my spirit, intact.

Flowers by my bedside,
Faithful and true,
Representing beauty,
My life, renewed.

Tuesday, August 16, 2011

Chemo Number Four, A UCSD Second Opinion and My Little Soldiers

I was so proud of my kids yesterday. I knew there were a half dozen people who would have watched them...but as I thought I was only going to be out of the house for about three hours for chemo and two for my appointment at UCSD, I knew that they would prefer to stay home. As Harrison is nearly 12 and Maddie nearly 8, Steve and I were OK with that. Besides, I was a latch key kid at that age.

Madison called me once during the day. It was around lunch time and I was in chemo. She says to me, "Mommy, are you bringing home food?"

My response, "No, I was not planning on it." This, I had already told them. I think it was wishful thinking on their part, as I we have been depriving them of fast food lately.

Madison replied in a chipper, non-whiny tone, "OK, Momma. I was just checking," and in the same efficient manner that I tend apply, she ended our conversation. Harrison made them peanut butter and honey sandwiches.

When I got home from chemo later than I expected, all was fine. Their laundry was put away, as I had asked. They had both read their books for an hour, as I had asked. My friend and colleague, Lori Mathios, had dropped off a beautiful salad and fixings for us to have for dinner that night, which was fabulous. The house was a mess, but I was fine with that. My kids were safe and not arguing.

Chemotherapy had gone well, but I was more tired than I expected. During my session, Dr. Sweet came to see me to answer a few questions that I had with regards to my blood counts, which was nice. After I got home, I had time to spend a few minutes with each of my kids and then managed to fall asleep on the couch for a bit. When Steve picked me up to take us two our second opinion at Dr. Sara Boles at UCSD, I was glad that he was able to do so. I was much too tired to drive.

Dr. Boles was a great match for us. Not only was she warm and friendly, she has a specific interest in metastasized, triple negative breast cancer. Jeanie Spies, RN, my long time friend and confident from Rady Children's Peckham Center Cancer and Blood Disorders, came to the appointment with us.We started reviewing my case with Dr. Boles. Steve and Jeanie chimed in where appropriate: Jeanie, having a great outsider's view of how I had handled this disease/past chemo and Steve filling in a few pertinent blanks in my two year ordeal.

Dr. Boles had reviewed my chart thoroughly and talked to the doctor who is PI on the Phase I clinical trial for my disease, Protocol No. P276-00/52/10. We talked in depth about the status of the clinical trial and how I might fit into it. There is a current waiting list (that I am now on). I would have to be a UCSD patient...which I could become during Steve's district's open enrollment period in November (taking affect in January). If we decide to go this route, more than likely, I would be entering this clinical trial in Phase II, the randomized part of the trial, where a computer would authorize the use of the new drug, currently referred to as P276-00. I would have a 50/50 chance of receiving the new drug. Either way, I would receive gemcitabine and Carboplatin chemotherapies concurrently, i.e. if receiving P276-00, I would be receiving a third chemotherapy drug. This makes sense to me. Jeanie states that gemcitabine is one that use at the Peckham Center regularly...and it is well tolerated. Since I have never had either of these drugs before and I know my body responds well to chemo, we think these drugs may be good for me to try.

We talked about other chemo options, as well, such as parb-inhibitors. However, I felt that the most important part of my visit was this: I learned of the glowing results of my pathology report from my mastectomy. It was a good as they come. All of the matter that Dr. Deree removed during my modified radical mastectomy had no signs of cancer. In other words, the matter removed was just scar tissue and lymph nodes. I knew that chemo had shrunk the tumor by 75%. However, what I did not that while the tumor was still existing, the cancer was not.

Obviously, a cancer cell got away. But the good news in all this is that chemo works for me. This gives me great hope.

With 6-8 known tumors on my liver, Dr. Boles explained that to her, the state of the cancer means that there is probably cancer is another organ. The cells are currently too small to detect through a CT scan. If this is the case, I am guessing it is in my lungs, where last month, a CT scan showed  two "non-descript" spots that Dr. Sweet is watching. For this reason, chemo is my best option.

That being said, I feel stronger than ever. If anyone has the tools to fight this, it is me. More important than body chemistry and a strong disposition, love surrounds me. More and more, I am convinced that modern medicine alone is not the answer for me. I am the answer. My family is the answer. You are the answer. Bring on the chemo. I can take it.

On another note, I ate almost all raw food yesterday! I think I had a small piece of foccacia at dinner and a few Wheat Thins during chemo...and that was it for processed food! I am also replacing a meal (or two) a day with green shakes. Yesterday's was honey dew, spinach, organic honey and flax seed. It was not too bad! This morning's is kale, spinach, apples, bananas, flax and maybe some honey. I might throw something tart in there too. Maybe some lemon juice.

This is a very long post. But before I close out, I wanted to share with you what Steve and I came home to last night: a show, carefully rehearsed by our kids. Performed on our trampoline, it was a choreographed gymnastics routine to the song, "Look at Me Now" by Chris Brown. Our little soldiers...always fighting to bring a smile to our faces.

Thursday, August 11, 2011

A Walking Science Experiment

Next time you see me, I may have no hair. The day after my birthday, it started to fall out. I am mostly loosing hair from the front half of my head, which I guess is good because I would hate to be walking around with bald spots that I cannot see. Now that I am loosing my hair again, I start to ponder what it will be like the second time around. Will I go out in public bald? I am not sure if I am that brave. Will I like the hats that I already have, or will I prefer scarves? I am pretty sure that my eyebrows are goners, but will my eyelashes hang on? I do think it is interesting that my hair started to fall out the day after my birthday, like when you are starting to get sick before a big event and your body holds it off until the event is complete. Sure enough, the day after my birthday, my hair filled the comb.

Trying not to focus on my balding head, like a bee to a flower, I am busily extracting pollens of knowledge from many, many fields. First and foremost, I am meeting with my health coach, Tammy, every other week. An interesting lesson this week, we spoke of "primary foods" as not being foods at all, but the energy filling your life through spiritual, family and career activity. The concept brings me back to times where I have been so happily focused on a project that I forget to eat. Or, from the perspective of my children, when all they want to do is play and they "are not hungry." The idea is to fill your life with joy so much so, that food is no longer the focus and the "secondary foods" that feed your body are clean, high energy foods. Not to say that I will never have ice cream again.

I also am slowing adding raw food recipes to my diet and investigating a 10-day detox, called the Green Smoothie Detox. I am finding I have so much to learn in so many respects that it is a bit overwhelming. Tammy keeps reminding me to take one thing at a time and to make it easy. I will get there, I suppose. Many thanks to my friends, Bernadette Miller and Zanetta Heard for the inspiring emails and resources.

I have had Reiki twice from my friend Karen at Home and Soul in El Cajon. (A special thanks to Teri Favro for making this happen and introducing me to Karen!) Both sessions have been very moving to me, helping me to relax in a way not easily explained unless you have had personal experience. I am also receiving Healing Touch weekly, as organized by Cheri Fidler and my colleagues at Rady Children's. Reiki and Healing Touch are very similar. Both are playing a critical role in my ability to focus on healing.

Today, I see Dr. Sweet. I have two more rounds of chemo left (six more sessions). I am enjoying my week break from chemo, immensely. I am tired, and I think the chemo side affect of fatigue is trying to take hold. But I also think that the chemo is working. I have no pain...unless I eat really unhealthy. My liver does not like me very much when I do that. Anyway, I will be interested to see how each healing therapy that I engage will aid me in my recovery from this disease. I know that love heals. I know that food heals. I know that chemo heals. How they work together...well, that is the ultimate science experiment.

Monday, August 8, 2011

Today is my Birthday, Hold my Hand

Today is my birthday,
Hold my hand.
Fingers locked together,
You understand.

No present needed,
No cake will do,
Just hold my hand tight,
Find strength, anew.

Today is my birthday,
Hold my hand.
Tell me that you'll fight with me,
As our future demands.

In sickness and in health,
For that we did vow,
Never thought it'd be me,
Sickness plagued, now.

Today is my birthday,
Only 40 years old.
Prime knocked down early,
Faith and hope unfold.

Into something so great,
Much bigger than me.
Making a difference through caring,
For all who I see.

Today is my birthday,
Please hold my hand.
Tell me you love me....

Never let go......

Friday, August 5, 2011

An Adventure in Raw Foods

As I helped to pack my husband's lunch today, it hit me like a ton of bricks. I am so proud of my husband for his efforts in eating healthy and for his willingness to change his eating habits. For those of you who know Steve, you may be slightly astounded by what makes up his diet of late. For breakfast, I make us eggs with spinach, zucchini, tomatoes and bell pepper, using rice milk instead of regular. We split a piece of Ezikiel toast between the two of us and share a couple of  early morning moments together (usually) before he races off to work.

As a teacher with little time to eat during the day, he brings dry, plain oatmeal with a handful of blueberries and a touch of brown sugar to eat at his school's "Nutrition Break". Not originally a fan of blueberries, he now enjoys the flavor that the bursting blueberries add to his oatmeal, after it is cooked in his classroom microwave. At his request, for his lunch, I packed him two small oranges, an apple, an organic yogurt and a Trader Joe's frozen entree. My "meat and potatoes" man is experimenting with healthier foods and vegetables now on a regular basis. And for him, this is a big deal. And I am extremely proud of him.

But now comes our biggest adventure. Raw foods. Yesterday, I met with my absolutely fabulous health coach, Tammy Moretti. (Thanks, Mom and Dad!) I told her that I felt that it was up to me to cure my cancer. As much as I trust and love my oncologist, Dr. Sweet, I do not believe that Kaiser is equipped to cure my cancer. I am exploring other medical options, of course and I will take Dr. Sweet's tremendous knowledge into consideration. However, I believe it is up to me to cure my cancer, through a combination of therapies designed for my mind, body and spirit.

That being said, Tammy recommended a "raw" foods diet for me. We talked about how raw foods could help to aid my body in healing, helping it to function on the highest level possible. Before Tammy made this recommendation, I had researched this possibility and my gut instinct told me that this was my best bet. Truth be told, I am not eating a lot of meat right now. Drawing protein from raw almonds and eggs, I feel good and do not really miss it. While the thought of eating mostly raw foods scares me a bit, I think I can do this.

Tammy challenged me to find a new recipe a week for our Vitamix. She said that my Vitamix and I are going to be best friends. She also reminded me that I should not try to go raw over night but that I should start replacing out meals little by little. Finally, and most importantly, she warned me that my diet was going to be about 90% different than that of the kids. Becoming more of a "short-order" cook in having to prepare two different meals will be hard. However, we talked about how my diet would have a positive influence over theirs over time, which makes me very happy.

And then there is Steve. When I discussed it with him, he lovingly asked, "What do you need from me?" I think he might be trying some of what I eat, but I expect it will be a slower and less complete progression for him. That is more than OK.

So last night, needing eggs and milk, I dragged my incredibly tired self to the Trader Joe's. As I wandered around, I picked out a couple of things that I needed to make raw Hummus. My first raw and Vitamix recipe. They did not have everything I needed...but then again, I have a birthday coming up. I think I can wait until after then to venture out into the raw foods way of life. In the interim, I am going to enjoy cooking eggs for me and Steve in the morning...and have birthday cake on Saturday night and celebrate a new decade with my friends and family.

And if you come to visit me next week...I might just offer you some raw hummus and crackers.

Monday, August 1, 2011

Chemo Session Number Three, Complete; Emotional Roller Coaster in Motion

I had chemo today. It amazes me how much energy I have after chemo. I assume it is the steroids that they give me via IV before prior to the Taxol, a boost to carry me through. Based on this assumption, I am careful to rest. However, the fact that I am upright and an energetic participant in conversation is deceiving to those around me. I have been known to blurt out awkwardly, "You know, I had chemo today. Slow down."

Overall, I feel fine.This is one of the hardest parts of chemo. Nothing is dramatically wrong. I have an ache or pain here and there. Fatigue that randomly injects itself into my daily life. A picc line. But other than that, no outward symptoms. I do not walk down the street feeling like I have a sign over my head that says, "I have cancer. Help me. Feel sorry for me." Though sometimes that it is exactly what I want to do.

I know better than to let the "pity party" dictate my daily life. It is not good for my psyche, and I have too many who depend on me to be positive. And I say that because, I can see how my sadness affects them. When sullen moments become overwhelming, I tend to process my feelings internally, vent them in my support group and let myself get distracted in the basked attention that is being lavished on me and my family right now.

Hand in hand with these feelings, the immense feeling of guilt is another hard reality of my cancer recurrence. Through the years, I know I have not always made the best health choices for myself. Often, I contemplate what part neglecting my health has caused my cancer. Diet coke? Sugar? My epilepsy meds? I know that I will never know. I also know that it could have been any combination of things that have yet to be discovered. It could be even be a gene that they have not discovered yet. (I am BRACA 1 and 2 negative.) To let myself off of the hook, I rely on the messaging I learned in Weight Watchers and I do/have done the best I can for myself everyday. And if the best that I can is eating chocolate cake for breakfast, then that is OK (not that this is a regular practice). I know I have done the best that I can. Mostly, I hate watching  my family and friends hurt and the thought that I could have done something to prevent their suffering, bothers me. And the emotional roller coaster moves along.

As far my treatment progress, I am waiting for second opinions. I have good leads and things are in motion. It looks like I will be seeing Dr. Sarah Boles at UCSD in the next two weeks. We are very excited as she is in process of designing a clinical trial for metascized, triple-negative breast cancer....which is exactly what I have.

On another note, next week, I have a break from chemo. This essentially means that I have two chemo-free weeks ahead. (Next treatment is 8/15.) Yay! We are celebrating my 40th birthday next weekend (my birthday is August 8). With no chemo, I intend to celebrate all week long. Because I like attention like that. The pity party is not welcome.