Monday, October 31, 2011


My dizziness radiates,
From behind my eyes.
A light spinning,
That I recognize.

For it comes with being epileptic,
A side effect of those meds.
My entire life suffered,
Seizures feared instead.

Instead of the cancer,
Which now riddles me so,
The dizziness, almost a comfort,
My sight suffers, although.

I hold onto railings,
Cancel all driving, indeed.
To let the dizziness pass.
I have kids to feed.

They do not know how I suffer,
For their day to run smooth.
They do not look in my eyes,
Pupils dazed and un-soothed.

Rest is the answer,
Sleep should do the trick.
Meds can be monitored,
To let my body heal quick.

Today is my journey,
Nothing is more true.
Making the best of each moment,
Dizziness aside, each day anew.

Sunday, October 30, 2011

Feeling Normal

I am up before the birds again. You know you are up too early when you have been up for a good half of an hour before you hear your newspaper arrive on your doorstep. That is me....almost every morning. I think it is mainly because my body needs roughly seven hours of sleep each night. My days exhaust me. So, I fall into bed before 9:00 most nights. Thus, I am up before 5:00 a.m. It is very frustrating to have such an odd sleep pattern.

All that aside, I wanted to write today to share that fact that  yesterday was my first day that I felt "normal". At least, by my standards. What does normal mean to me? Mainly, it means to not have my body scream out for a nap if I am have not laid down by 1:00. Yesterday, with Steve and the kids, I was running around from 9:30-7:30.Our schedule was daunting and Friday night, I was really worried. Not to bore you with details, but in this case, they are pertinent. We dropped Madison at gymnastics class at 10:00; ran Harrison over to soccer (he had to be there at 10:30 to warm up for his 11:30 game); hung out with fellow United soccer parents before the game and then watched the game (Steve had gone back to get Madison at gymnastics in the interim); grabbed a quick lunch; drove to Poway for Madison's gymnastics league meet; grabbed a quick dinner; and ended our day at the movies. Steve constantly checked in with me, like I knew he would. After we finally arrived home at 7:30, I almost immediately went to bed.

That schedule may seem daunting to some. However, for the parents of active kids, I am sure the schedule seems "normal". The best part of it was that I felt, "normal". Yes, I was tired. Yes, standing for any given period of time was difficult. Yes, the walk from the car to the movie theater had me a bit winded. BUT, amazingly, I felt invigorated after the movie. Until I sat down, at least. I felt like I had accomplished a great feat. Or had been given a gift of normalcy. I felt fantastic.

Truth be told. beyond the fact that I have terminal cancer, my life often seems like a downward spiral in missed opportunities and disappointment. Yesterday, I read a blog post that I really related to regarding the reality of my life, or lack there of. (If you would like to read it, you may link to it here.) While the post seems negative to the reader, it fired me up in a way that is hard to explain.

It is difficult to know whether this fire perpetuated my stamina yesterday. To be honest, I do not care. I may crash hard today. I may not. Either way, I will treasure yesterday's "normalcy" as if it were my last. Until I have another...and I trust that there will be one. I hope there will be many more.

Thursday, October 27, 2011

Feeling Better

I am feeling better. For the last couple of days, I have had a little extra energy. Mornings are my best time. By lunch time, I still am pretty tuckered out. I try to nap between 12:30-2, when my daughter arrives home from school. However, I find that I am fairly groggy when I awake. It is a little frustrating. I hope that at the days get further away from my past chemo infusion, my energy level will continue to increase.

That being said, I am taking another chemo treatment via pill form twice a day. I am on about day 9/14. I was having issues with nausea over the last several days. Thankfully, Dr. Sweet changed my nausea prevention med and it seems to be working. Life without nausea is sublime!

The insertion of my port will be on Wednesday, November 3. I am not all that excited to be back "under the knife". However, I know that in the end, this is the best choice for me long term. It will help to save my veins against their potential collapse as long term chemo infusions can cause.

So, I sit here on my couch, still groggy, though it is 5:00 in the afternoon. I never quite recovered from my nap. It is disappointing, but I know I will survive. And with patience, I hope to do more than that. I hope to live a little more. Day by day.

Wednesday, October 26, 2011

Counting Hours

I used to count minutes til lunch,
Or sometimes until happy hour.
I used to count days until vacation,
Or time, kids aflowered.

Now, I look at the clock,
Tortured, it stares back at me,
Counting the hours and minutes,
Until the next medicine is free.

Sometimes they go fast,
Sometimes oh, so slow.
Never a rhyme nor a reason,
To predict, undecidedly so.

Sometimes it is relief from nausea,
Sometimes it is relief from pain,
Sometimes it is counting the hours,
Until my chemo drug is taken again.

When not counting the hours,
I am counting the days,
Until my next infusion,
The next battle remains.

For it is all for the good,
All fighting for one,
I pray for an end to the cycle,
I pray for a cure, coming undone.

For I can count hours,
And I can count days,
But life slips through my fingers,
Me on the sideline, sideways.

Hope is my confidante,
Grace holds my peace,
Working towards a balance,
Working to end my disease.

Wednesday, October 19, 2011

Chemo Re-Started

Yesterday, I re-started chemotherapy, a new cocktail of Xeloda and Ixempra. I received the Ixempra via IV. The chemo nurse found a vein and started my IV on the first try. She gets brownie points for that. I did have a slight reaction to the chemo, making chemo take a little more than six hours. My dad was there with me. He left to take a walk, to grab us lunch and to run an errand. I slept most of the day. I am unsure as to why...but I was very lethargic when I woke up in the morning, too. Either way, I do not have Ixempra again for three more weeks.

After chemo, I came home, took another nap, ate dinner and took my Xeloda for the first time. I went to bed early. I will take Xeloda twice a day for 14 days. Nothing too notable to tell as of yet. I am am taking a vitamin called Neuro-V that was given to me by a friend of my sister-in-law. A side-affect of Xeloda is neuropathy, numbing of the hands a feet. Neuro-V has been proven to help with prevent/lessen the side effects of neuropathy. I am hopeful.

One of the main side effects that I have been fighting is shortness of breath. I feel like I have been constantly climbing stairs and am too out of shape to be doing so. I am conscience of every breath. Walking up the stairs in my houses causes a slight pant. Making my lunch made me want to sit down. I did a bit of research and learned that exercise is good to help oxygenate my lower lungs. I thought about it, uncomfortable and worrying about my limitations in general. Is this the way I am supposed to live? Finally, I thought, "Screw this! I can be uncomfortable on my couch or I can be uncomfortable doing things I enjoy."

After dinner, I got suited up and took Cooper up for a walk. I felt a little better afterwards. So, I think I will keep going for walks. I might even go out to lunch with my colleagues tomorrow. And maybe Friday, dancing? OK, maybe not. Someday, though.

Monday, October 17, 2011

My First Public Speech about Me

Last night, I spoke at a dinner to about 150 participants of the Pink, Pink, Pink Golf Tournament at Riverwalk Golf Club. This was my first public speech about my breast cancer; my first time speaking in a public venue of this sort, in general. I had no doubt in my mind that I could do it, figuring that if I can present a grant award for celebration to 100 Hospital managers (at work), I could accomplish anything.

I also am quite comfortable sharing my story. Last night, what was interesting to me was the fact that when I was asked about why I share so much, I was not able to answer. I have always felt that more good has come to me from openly sharing my breast cancer journey. I learn more, more people offer to help, I meet more people, and the list goes on. However, when stating these reasons aloud, I suddenly felt very selfish. Has my blog gone too far in telling people what they want to hear in order, in order to draw more to myself?

Not something I have shared in my blog, truth be told, I have had a really rough couple of weeks. In my blog, I try to remain positive, believing strongly that documenting anything negative is a waste of energy and too hard for people to read.  A couple of the topics that I did not write about are as follows.
  1.  I was in the hospital last week with an infection stemming from my picc line. It was really scary and I had to miss my regularly scheduled chemo. I am fine now. My arm is healing. I am a little upset with the nurses who were supposed to be caring for my picc line and am wondering how I knew something was wrong when they did not. The picc line is out now; I have a scheduled port placement on October 27.
  2. The Taxol did not work. I know, I did write about this. However, it was not until the end of the week last week that I started to admit how scared I really am. Crying on my mom's shoulder, and then again to my brother felt good. Again, I do not like to talk about these I you may never here me utter a word after this blog post. I stand firm in my belief that it is a waste of good energy to talk to the world about being scared, but in the safety of my own home, I am learning it is OK.
  3. My emotions have been hiding in my food choices. Yes, I still have my green smoothie every morning. However, lately, I have been more apt to make bad food choices, which I have paid for both physically and mentally, beating myself for feeding the cancer acidic food.
Sharing my story last night, along with my emotions this weekend, I think things might be turning around for me, however. It was such a pleasure and a joy to meet the fantastic people who played in the Pink, Pink, Pink Golf Tournament, benefiting the Komen Race for the Cure, San Diego. Thanks to the good work of Monica Davis (General Manager), the Riverwalk staff, and generous sponsors, they raised more than $3,000. I am especially honored to say that they are going to credit it to team, Racing for Marsi. Believe me when I say that this is very unexpected.

Moreover, the standing ovation of the crowd last night brought tears to my eyes. Having my family, parents and brother (Kelly, you were missed!) beside me made the night truly special.

My mental state might not be entirely back on track, but I am confident that it will get there, one day at a time.

Saturday, October 15, 2011


I often hear him breathing at the top of the stairs that lead down to our bedroom. He generally spralls out on the floor, paws extended as if to block the hallway completely. I think Cooper aims to guard me while I sleep. Sometimes at my bedside, sometimes at the foot of our bed; and sometimes even on our bed, if I let him.

He is patient while I sleep. Never minding if I need to step over him in the middle of the night on my way to the bathroom or to get a glass of water.

This morning, when I layed down for a nap, Cooper made a place for himself right on Steve's pillow. I rested quietly for a while trying to meditate myself to sleep. I was breathing into the pain in my side willing it to decipate. It was not working. As my breaths got deeper and more deliberate, Cooper sat up at attention. He licked by face and rested his head on my arm, sensing my unease. I have been learning about channeling energy and prayer to help in healing...and so, I borrowed Cooper's good energy to help me relax. It worked. I arose from my nap about 20 minutes later, completely refreshed.   

I call him my prince, a private name that I only share with him. When I look in his eyes, love pouring out, it suits him.

Thursday, October 6, 2011

R.I.P Steve Jobs

Yesterday, I was greatly affected by the passing of Steve Jobs at age 56. While his cancer is completely different than mine, I had been following his story closely as he fought for his life publicly and privately. He was an amazing man. Brilliant man, whose ideas impacted probably more technology than we even realize, as I have no doubt that many, many of today's technological geniuses were inspired by his work.

All that being said, selfishly, the thought that keeps ringing through my brain, like a school bell calling students to class, loud and clear is: "God, I hope I live to be 56." Not to trivialize his fight. Not to make it about me, at all, but at age 40 with one chemo treatment unsuccessfully tested and my tumors still growing (even ever so slightly), I am scared.

For the past 12 hours, I have been struggling with whether to write this entry in my blog. I have been struggling with who might read this and be upset. Most importantly, I have been struggling with how to turn the negative connotation of living to age 56 into a positive affirmation. Truthfully, what I want to tell myself and by doing so putting into the universe, "I am completely healthy. My body will rid itself of cancer and I will live a long and fruitful life."

I thought that maybe if I wrote this in my blog, I would be one step closer to resolving my conflicted emotions. Maybe.

I have been reading so many wonderful quotes that Steve Jobs exclaimed during his career at Apple. I think my favorite was posted on my cousin Melissa's FaceBook page. It reads:
"Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma —which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”
In my heart of hearts, I know that my time is not limited any more so than the person who sits on my left or my right. Moreover, worrying about what kind of time that I have left is a waste of energy and will impair my struggle.

Now, if I could just get my brain wrapped around that......

Tuesday, October 4, 2011

Digging Deep: Disappointing Scan Results

The results of my CT scan of my chest and abdomen showed a slight increase in the size of my tumors on my liver. Disappointing, YES! The good news is that there is no cancer on my other organs. The other good news...this is only the first form of chemo that we have tried. Like I told my kids yesterday, if every form of chemo worked on every person, there would be a cure for cancer by now. Besides, the way I see it, because I have a particularly aggressive form of cancer, the chemo may have worked very well and dramatically slowed down its progression, an indicator that can never be measured.

All that being said, I start a new chemotherapy regimen on Monday. After much discussion, we opted for two drugs that Dr. Sweet said he has seen work well together, Ixempra and Xeloda. One will be infused every three weeks; the other being pill form and I take it every day for two weeks. I have great faith that regimen will be the ticket!!!

Dr. Sweet also treated me to a handicapped parking status, as chemo is causing shortness of breath like I have never experienced. It is so frustrating to be out of breath before I even enter my destination! Walking any distance is difficult...though I will continue to try. Somehow, I think it is good for me.

We also talked in great length about switching from Kaiser to the UCSD Health System. The move would be very costly, but my gut instinct is leaning towards the change. Another mitigating factor is that our Kaiser doctors/clinicians feel like family to us, and I am not just referring to Oncology. I love my kids' pediatrician; my neurologist is fantastic; my plastic surgery team is the cream of the crop; my general surgeon is very talented and more like a friend; and, Steve and my primary care physician is thorough, caring and was Steve's dad's physician, as well (many of you know of his dad's heart family history is really important). Distance would also be a factor. Kaiser is right around the corner from my house; Moores Cancer Center is a 30-minute drive. Considering I am at an appointment at least twice a week, combined with the fact that I am getting more and more tired and driving less and less myself, distance is definitely something to consider.

Having spent my career in the health care industry, I have learned that nothing can replace state-of-the-art care. While chemo is the only answer for me right now, over time, who knows? And, though Dr. Sweet is very versed on up and coming research, I believe Moores Cancer Center doctors are bound to have access to the latest and greatest treatments prior to Kaiser.

All this considered, it would be very difficult to leave Kaiser, still. Steve and I will weigh all of the pro's and the con's and make this decision very soon. Although, it may seem like I am leaning towards the UCSD system in this post, I digress as there are many other factors to consider that I cannot amply describe here.

Now, what I have decided is that I must turn my focus to doing every thing in my power to promote the health of my liver. My diet is bound to get stricter.....and I will do what ever else I can, too. Blood tests show that my liver function is stable, not perfect but not declining. Keeping it that way is critical to my ability to continue metabolize chemotherapy drugs.

So, yesterday, I was pretty upset. Today, I still am. I am talked out, which I why I wanted to post this morning. However, in order to do so, I really had to dig deep to put the disappointment of yesterday into perspective. What I kept coming back to is that if I worry too much about tomorrow, I miss the special moments of today. I have today. Today is a gift. And my tomorrows....they will keep much as any of us can know of our tomorrows.

The bottom line is that nothing has changed. I am still here. And I am grateful. And I am blessed.

Monday, October 3, 2011

Waiting for Test Results

My body knows a secret,
Privy, not is my mind.
Status of cells shrinking,
Or growing, unkind.

Status of cancer,
And side affects wherein,
Chemo taking its tole,
Tokens collected, within.

Minds are racing,
Even a kiss from my son,
Secret spoiled in minutes,
Wondering, "Have we won?"

"Have we beat this monster?"
"Will we beat it, true?"
Family emotions tied together,
A knot, tight, bound through.

Doctor knows the secret,
His office awaits.
Morning will crawl.
Until we know fate.

Medicine only offers,
A single aspect of care,
Depending on my body,
For help, to take us where,

We can find some answers,
We can learn from within,
Finding treasures in spirit,
Finding strength among the din.

Faith, we have plenty.
Love, boutiful and pure,
Holding onto both,
Promise health and a cure.

Sunday, October 2, 2011

A Chemo Tired

I woke up writing in my head again this morning. I think when this happens, my subconscious is trying to help me work through frustration...and sometimes the best way for me to do that is to write.

My most current frustration: exhaustion, a chemo tired.

"Marsi is too tired," I heard my husband say over the phone to a friend.

"Mommy is too tired," I heard myself admit to my children.

It is not an excuse....and not that any of you think it is. I wish it was. I wish I was trying to procrastinate a mundane task. Truth be told, when I say I am too tired, it is because every muscle in my body is crying to sit down, rest or sleep, a chemo tired.

Yesterday, I skipped out on several responsibilities that had I completed, would have made my husband's life a lot easier. In my head, the day was planned as follows: in the morning, I would go to the Shamu & You Family Walk (benefiting Rady Children's), taking Madison with me so she could walk through Sea World; following this, I would take her to gymnastics; and, then, circle back to Harrison's soccer game. I would be home by noon and could rest to my heart's content.

Unfortunately, the day did not fair as I planned.

Let me first start by saying that the Walk was really important to me. I have worked at Rady Children's for 15 years. A professional fundraiser since 1999, I helped to develop the Walk's very first online registration process. Now in its 5th year, the Walk gets amazing support from the community and I am so proud of my colleagues who have worked so hard to keep it going. The walk brings together more than just the Foundation staff.....but receives Hospital-wide support, with many walk "teams" from across Rady Children's continuum of care, a real "coming together" of my Rady Children's family.

I registered myself to walk on the Team "One Crazy Grandma" before I knew I was sick. While I did not think I could/should walk the entire course, I knew my attendance would mean a lot to my colleagues. Plus, I remembered from the way the walk is structured that Madison and I could just walk through Sea World, where Madison would get to see several Sea World animals and Shamu. While I knew I could make that short jaunt, what I did not count on was the heat. It was supposed to be 70-degrees by noon. Not so much. It was hot! Still, I did mostly OK on the walk. At one point, I sat down for a bit and my good friend Chris walked Madison through the last exhibit set up just for the walkers. When I rejoined them Madison says, "Your friend is really nice."  Yes, I know.

It was a slow mile and we had a great time. However, by the time I got back to the car to take Maddie to gymnastics, I was cooked like toast. I thought, "OK, I will take her to gymnastics...I am OK to drive. And then I will drive to Harrison's soccer game and Steve can go pick Maddie up from gymnastics. I will take Harrison home after his game." (Thus, eliminating two legs of my original plan.) However, by the time I pulled into the parking lot for Madison's gymnastics, I knew I was not fit for anything else but going home and back to bed.

I tried so hard to justify going to H's soccer game. I knew all I would have to do is "sit" once I got there. I knew I would not have to carry a chair back to the car nor would I have to do anything else besides walk. Still, I also knew I was barely fit to drive as it was and could not imagine transporting my child home in my current condition.

As I called Steve to tell him I was not going to make it, I knew I was making the right decision. My super hero of a husband did not hesitate in picking up the slack. However, after returning from his game, as my beautiful son amply described the game's highlights so I could envision his team's win, my heart sank a little. 

It seems like the distance between what I want to do and what I should do is growing from a crevice to a canyon. Truth be told, folding a load of laundry can wear me out. I wince when I know I have to park far away from a destination. Just making my green smoothie in the morning often makes me tired enough that I have to sit down. And this list could go on and on. So, even though  my body does not hurt, the physical heaviness and consistent exhaustion is almost guranteed.

As many of you know, I am also epileptic. Last time I went through chemo, fatigue caused me to pass out and have a seizure, after which, I could not drive for six months. Knowing fatigue puts me at risk for having another seizure, I struggle with deciding what to put on my myLifeLine "Helping Calendar" that does not seem to be too much of a stretch. Yesterday, the thought crossed my mind that I needed to show someone else how to make my green smoothies. I shuttered at the fact that I would not even have the energy to do this...but also know I have to face these facts now.

As I type this, I feel like I am letting you all in on a big secret. A secret fatigue that has me tied to my couch, too tired to play Words with Friends, much less to read a book. Right now, I am too tired to get up and refill my coffee cup, my head spinning ever so slightly. Is this what chemo tired is? Or is this something else? I am thankful that I see my doctor tomorrow where I can report my fatigue....and maybe he will have some answers?

Still, writing remains my blessing.....along with readers. Below, I have included some pictures of my and Madison yesterday. These moments of joy are what I am truly hanging onto...and Madison's face says it all.