Saturday, October 30, 2010

Strange Week

This morning, I awoke to words raining through my head like a blizzard. Their subtle impressions coaxed me out of bed early for a Saturday.

"I need coffee," I thought.

The stairs leading to the kitchen seemed like a mountain. My body is tired. It has been a busy week and in reflection, a strange week. The news of my immediate supervisor, Chuck Day's resignation from Rady Children's to pursue a much deserved career opportunity had me wearing my emotions on my sleeve all week. My career working for Rady Children's Hospital spans more than 14 years; I have worked and been mentored by this dear man, truly one of the best in his field, for seven.

Through my cancer journey, Chuck had faith in me, in the job I could do; even when my perfectionist self did not. And I am not necessarily talking about the the last year, when I have worked a sporadic schedule. I am talking about the period of time before my diagnosis when I was clearly not working to my full capacity. I knew it. He knew it. We just both hoped it was short-lived. Little did we know that cancer had hijacked my body and slowed my abilities to a stand still.

In addition, while working for Chuck, my writing skills have soared. In fact, when I first started writing in this blog, I like to say that I was "channeling Chuck." I would think to myself, "If Chuck were to edit this, what would he say?"

"Bigger vocabulary" "That is an awfully long sentence, isn't it?" Will is stronger than would." "Use 'over' correctly"(which basically means I use 'more than' a lot). And so much more. Chuck is a relentless editor.

Getting back to my week, I had an appointment with Dr. Sweet on Monday. The appointment was standard follow-up and he did not tell me anything that I did not already know. I am to watch for anything out of the ordinary and report back to him. I laughed nervously when he said, " I do not exactly what that might be." I will see him again in six months.

I also spend a fabulous evening with the Young Survival Coalition, at the SK Sanctuary Spa in La Jolla. Dr. Stephen and Lynn Krant, the spa owners, donated services of the Sanctuary for the evening. I had a luxurious massage and facial. We listened to a great speaker named Stephanie LaRue. Once again, I was reminded that I need to eat right. I was reminded that cancer is an unpredictable animal that pounces when you least expect it. That lurks in the background waiting for its chance to invade. That chemo does not always work. Sometimes, I come away from gatherings with other cancer survivors feeling scared for my future, or lack there of it. Sometimes, I just feel pretty darn lucky. But always, I enjoy being around these incredible women whose personalities light up a room.

So this week has been strange. The highs and lows that I wrote of here were followed by a sequence of other important activities that I will not document but were taxing just the same. Coming into Saturday, I am OK. I would not have changed a thing about this week, outside of maybe my boss leaving. But then again, he deserves more recognition for his numerous, astounding accolades. I am happy that he found just that.

Friday, October 22, 2010

The Game of Life

I just finished a rockin' game of Life with my kids. The Sponge Bob version to be exact. Harrison assigned himself to Mr. Krabs and Madison was Sponge Bob. I got to be the paperclip. (We are missing some game pieces.) Harrison was the banker. Madison was in charge of the game cards for which she sang every word on the card in perfect pitch during the entire game. We worked our way around the board experiencing job changes, pay days and expense cards. We laughed and we bickered. We even danced a little. Mr. Krabs, the cheapskate by character, won. Kind of fitting, I think. As was playing this game on this night after this week.

Today, I was presented with an opportunity to be a part of a research study on nutrition for cancer survivors. However, only survivors diagnosed with cancer in stages I to IIIa qualify to participate. I did not think I was a fit, but I called Steve because I wanted to know for sure. For those of you who have read my past blog entries, you may remember that I never wanted to know my stage. Thus, I don't. I knew it was bad. I knew I had to fight a monster regardless of heavy weight ranking.

Steve knew definitively. "You were stage 3c or 4a, " he said. "The doctors said that it was stage four because it was inoperable but was downgraded to 3c when the chemotherapy worked."


"I really defeated a beast, didn't I?" I said.

"Yes, you did, honey. I am proud of you."

I was fighting for my life, after all. This past year, when people used that expression in regard to me, I always thought they were being over dramatic. Hmmm...maybe I was wrong.

Yesterday, I had a doctor's appointment where they filled my expander. The expander now harbors 200/350 cc's of saline, which is gradually being added in order to prepare my skin and muscle to hold the implant. While I waited in the quiet procedure room, I had a moment to reflect on my strategy for living my best life in the short term. I have been in such a rush to complete my journey that I had not thought in depth about the repercussions of having my last surgery immediately after Thanksgiving. I know how strong I am and how much I can handle physically. However, what I had not considered is what I can handle mentally. During this brief sanctuary of quiet reflection, I concluded that I do not want another Christmas season like the one I had last year.

I have a vivid memory of last year's Holiday Sing at the elementary school. Sadly, I do not remember anything about my child's performance. What I do remember is that my hair was falling out in clumps from the chemotherapy. I remember telling myself that my hair falling out was a good sign in that it meant that the chemo was working. However, inside, my heart was breaking. That night, I had clipped my hair up in a style aimed to hide my growing bald spots. I was sitting in the front row of the auditorium and people were filing in to sit in the row behind me. The rows were narrow and some parents inadvertently bumped my head as they squeezed by. I remember thinking that if one more person bumped my head that all of my hair was going to fall to the ground. I was astonished that it did not. That bitter memory is burned in my brain. I want to replace it with new ones.

This year, I want to go to ALL of the holiday parties. Go to my kids' school performances. Go to the December and January soccer tournaments. Bake cookies. Wrap presents. The kids are getting so big, so fast. At ages seven and 10, it will not be too much longer before Christmas loses its bright-eyed wonderment - which to witness is truly one of the best rewards of being a parent. I do not want to miss another moment.

So, playing the game of Life tonight with my kids tied my week's experiences up in a bow, like a gift. A sweet reminder of what could have been or not have been as the case may be. How lucky I am. How blessed I am to have countless more chances to sit around the coffee table in my living room and play a board game. I'll take being that paperclip and any Life expense cards you can throw at me. Mr. Krabs, I want a re-match!

Wednesday, October 13, 2010


"Marsi, you look radiant. I am so happy to see you!", exclaimed my colleague as she offered an affectionate hug upon my arrival at her office.

"Happy to be seen," I said, my standard reply.

This is how my conversation started, yesterday afternoon. This is how many conversations start that I have had since I went back to work. In this instance, my colleague is truly one of the most genuine people I know. Smart too. She has a heart of gold and the success that goes along with a smart person who is generous with her time and gentle in her manner. She is a grant officer for a large foundation. We have spent many lunches together, dining over discussion of children, soccer, vacations and our work.

As usual, we had a wonderful lunch together. We laughed. We talked about her the family cruise she had recently taken. We talked about business. After spending the lunch hour with one of my favorite people, I ventured back to my office satisfied. However, as my thoughts became solely mine and I started to strategize how to attack the work on my desk, my mind wandered through what had been our conversation of the afternoon. I thought to myself, what about me is so radiant? How is it that everyone keeps telling me how good I look? What am I missing?

Looking in the mirror myself, I see the same Marsi that I have seen for the past 39 years. My hair is shorter and curlier than ever before, but for the most part, it is the same Marsi. More than that, I have gained weight. Not anything to worry too much about. Just enough that the smaller clothes that were fitting me last month, are not fitting so well right now. It is almost as if the weight I lost on the top went right to my hips. It hardly seems fair, but then again, what about this disease is fair? Of course, the disease has nothing to do with it. The dark chocolate covered acai berries with blueberry from Costco, had everything to do with it though!!

Not to give anyone the wrong idea here. I am not fishing for compliments nor do I have low self-esteem. When someone tells me how "good" I look or that I am "radiant", I just sometimes feel like saying,  "As opposed to like death warmed over?" I realize that people do not know what exactly to say sometimes and are just trying to be nice. However, like in the case of my colleague, that is not her style. Genuine to the bone, I know she would not tell me how good I look, if she did not think so. So, then what is it?

Like everything else in my life, I tend not to dwell on things too much. Maybe she just liked my shade of lipstick. Either way, I will take it. And if you want to call me radiant too, well then thank you. Goodness knows, all the support in the world has been thrown my way over the course of the last year. And this is just one more show of it and for that, I remain grateful.....and radiant.

Monday, October 11, 2010

When it isn't Cancer - by Ann Gregory

The blog entry below was written by Ann Gregory, a fellow cancer survivor, for her blog, Ann's Fight. I was  touched by her by her words, particularly the last four paragraphs. However, to put them in context, I copied the entire entry. She is a very inspiring woman, a fighter with a positive spirit. Go, Ann! Go!

Upon first being diagnosed with cancer, my world simply stopped for the barest second and I could feel something shift and click in my mind. Every-day Ann traded places with a woman that I'd never relied on and that part of me that is a survivor emerged. My vision in that moment was so intently trained on my doctor's discomfort at delivering a cancer diagnosis to a perfect stranger only a few years younger than himself. I could hear those traitorous cloned white-blood cells rushing past my ears as my heart exploded with every beat. I had cancer.

I don't have cancer anymore. Haven't since achieving second remission in July 2008. Now I must live my life in that moment after cancer. Knowing that the genetic defect that lead to the first cloned white-blood cell may lurk deep within my bones is cold comfort.

I don't have cancer. I am living with the aftermath of treatment. My new immune system still doesn't like the decor of its new vessel and has decided to do a little redecorating. It's been working on my eyes and skin for some time now. Lucky for me, the drugs I've been using to keep Ann 3.0 under control worked up until a few weeks ago. The immune system has decided that my lungs, liver, eyes, skin, mouth, and fascia have got to go. The only way it can do this is to kill them as it would an infection. It hasn't quite keyed into the fact that we're all one and the same.

My breathing became tricky and my lung capacity reduced to 59%. Walking to class felt like running a mile. My liver became swollen and my abdomen became uncomfortable. All of the other nuisances magnified ten fold.

I have missed a lot of school for medical reasons. I had to see THE SPECIALISTS and have a liver and lung biopsy. Post transplant, when you have to see a specialist, you're going to see a doctor who deals with things they don't usually go over in medical school. I had three weighing in along with my transplant specialist. They all cautiously agreed that I had GvHD.

I'm now taking 64mg of methylprednisolone in addition to tacrolimus to try and pull the immune system back into line. My immune system is back in the toilet. I must now take three antibiotics, and antiviral, and an IV anti-fungal.

I was surprised with the news that a new PICC line would be inserted into my arm on Wednesday in order to be able to facilitate infusions. I had a little break-down after it was inserted. It all had to do with being frustrated. Frustrated that I have a tube sewn into my arm; frustrated that the IV nurse who did the procedure wouldn't write orders for dressing kits or heparin unless Chris took the training class to get re-certified. Chris has given me infusions and changed my dressings from the beginning. He's taken the class three times. He wasn't with me because I was just supposed to be having a check-up. There'd been no mention of a catheter insertion. It all coalesced to overwhelm me and I ended up crying in front of my transplant nurse. I don't cry in front of my doctors and nurses. I do cry when I get mad or frustrated. I hate the fact.

My nurse was great as was a former nurse who tracked me down to give me a hug. Chris and I returned to MD Anderson yesterday so he could take the class yet a fourth time. He wasn't able to challenge for a demonstration since the clinic was so short staffed. A local company is delivering heparin and dressing changes, so we should be covered. Chris can do this in his sleep. I can walk you through it step by step, as well. The only reason I can't do it for myself is that the line is in my upper right arm and I am right handed.

It's been a very emotional two weeks. My transplant doctor encouraged me to withdraw from school. The steroids wreak havoc on my body and with my moods and academic ability. I have reached a compromise. I dropped down to two classes. The two professors teaching know exactly what's going on and have shown me a lot of kindness as far as assignments and exams go.
I'm disappointed.

I also continue to learn the lessons that come when it's not cancer.

Just because someone you know has been treated for cancer, it doesn't mean that it's ever over. They are struggling with the life that comes after treatment; as a result of treatment. Don't think your friend/acquaintance is finished and has hit the ground running. Above all else, don't tell them that you had no idea that chemotherapy wouldn't be the end of it.

I have heard all of these things. Most of you have as well. I resist the urge to unleash on the most clueless of my acquaintances who continue to tell me that they had no idea regardless of the number of times I tell them that I'm in this for the rest of my life.

Life doesn't stop, it only takes a different fork in the road. The quality of my life is good. This latest set back will only be a nuisance for me, because I refuse to let it become something more. I will finish out this semester. I will take two classes next semester. I will continue to be available to anyone who wants to talk about cancer and the treatment process. I will hold hands and give out hugs and offer comfort. Because I can.