Wednesday, February 24, 2010

Chemo Five...Check!

Chemo number five was on Monday. For a chemo session, it was lovely. For a number of different reasons. I did not know what was to follow.

Leaving chemo on Monday, it was a gorgeous afternoon. Surprised by both the weather, my state of mind and how I felt physically, I encouraged my mom to golf the next day. Why waste the weather? I knew both my children were home sick with Steve on Monday, but did not expect that Harrison was as sick as he was, with a fever higher than 103-degrees, which was astoundingly still 102-degrees on Tuesday morning.

Still, Harrison is my more self-sufficient child and I knew he would rather be at home with me on Tuesday, so I did not think much about it, until I spoke with his pediatrician's office. Knowing my mom and dad were golfing, I called on my sister-in-law, Lynn, to take Harrison to the doctor to be sure he did not have strep throat. She was wonderful, re-arranging her plans to get Harrison to the doctor by 11:30. Good news: no strep throat; bad news: I do not think I closed my eyes for more than five minutes the entire rest of the day.

Dr. Sweet says I am handling chemo fine. However, he warned me of fatigue. Boy, did I figure this out by Tuesday afternoon. By the time that Steve got home on Tuesday, I was so tired that I really could not get off the couch. By the time I woke up on Wednesday morning, I was so dizzy that I could not stand up on my own. Getting Maddie ready for school was an adventure. (Harrison stayed home again.) I am still dizzy, as I type this. Though, my mobility is much better.

My good friend, Barbara, had called the night before offering to bring by lunch--so I knew that Harrison and I were set in that department. That was a good thing. I had nibbled on something for breakfast, as had Harrison, but we both felt much better after Barbara dropped off food (and flowers!). We watched a movie and some hockey (Go USA!) and I managed to stay awake for about one-third of it.

So how are we tonight? Steve and Harrison left for Harrison's soccer meeting. Still congested with no fever though, we thought it was important for Harrison to go here his coach speak about the upcoming soccer year. We did keep Harrison home from baseball practice, despite the exciting news that he will be the starting pitcher at his first game on Saturday. Maddie was a little congested this morning and is still tonight--but she has no fever!

I think I am having a hard time finding the balance in being a cancer patient, mom and wife...and not necessarily in that order. Several of my friends have called today...they are good are reminding me to take care of myself. I do not think I have been doing a very good job. I know I have not had nearly enough water today, for one. Keeping my eyes open has taken just too much effort, much less getting out of bed. I feel guilty constantly. Steve has to run the entire house - taking care of everything, especially since I do not even drive anymore. And then there is Cooper. Poor dog has had no attention all week. That makes me really sad.

On a positive note, as I stated earlier, Monday's chemo was great. My friend Nancy introduced me to her friends whose mother was having chemo at the same as I. They are a lovely family and we hit it off right away. Ironically, epilepsy runs in their family as well, a nephew, age 7. My epilepsy sounds very similar to his and it was almost therapeutic to talk about my experiences in an effort to help this little boy. Also, my friend Deborah stopped by. She is awesome, working at Kaiser and sharing her lunch hour with us. Her mom had sent a gift from the family and I was very touched. Family friends are precious.

So, as I sit here, I am still groggy as all get out. I am trying to focus on the good experience I had at chemo and the fact that I only have one more treatment left. Though, I know I have a long road ahead of me full of second opinions, a brain MRI, more than likely a bilateral mastectomy, radiation and reconstruction surgery that seems overwhelming at best.

I will get there. We will get there, me, Steve and the kids. We are just holding on to all of our friends and family right now. The family support, friendly phone calls, fun cards, and meals from San Diego United Futbol Club have been amazing. Please know that these are making a huge difference and we thank you. In the interim, I will be here, trying to keep my (slight) depression and Steve's stress to a minimum. Thinking positive. Thinking positive. Thinking positive. That is all we can do!

Saturday, February 20, 2010

Channeling Apolo

I do not get it. What a bad call by the referees. United States short track skater, Celski, disqualified from the the Olympics short track 1000 meter race. Hmm. It looked like the other skater caused the problem to me. Obviously, there is more to the sport than I will ever understand. Part of the game.

Kind of reminiscent of my week. Rolling with the punches. Taking the good with the bad. Understanding most, not all. Part of my game.

Following up on the events of my past weekend, I talked to a nurse from Kaiser Neurology this week. They have ordered an MRI of my brain and some blood work. We agreed that I would visit Dr. Kaplan (my neurologist) in a couple of months. The nurse assured me that there is not much Dr. Kaplan can tell me now that I do not already know right now and by waiting a couple of months, he will be able to begin laying the groundwork for me to get my driver's license back. Though I do not have official word from DMV, I am guessing that my license was suspended for a minimum of three months, potentially for six. I must remain seizure free. I am hoping for the best.

I also had an appointment with Dr. Sweet this week. All is set for chemo treatment number five on Monday. He was concerned by the seizure activity but rather than tell me I need to "do some laundry" as he usually jokes, he confirmed my decision to stop working. He re-read my surgeon's report where she stated that my tumor had shrunk from four to three centimeters, confirming that the chemo is working. He looked at the spider bite on my hand and the resulting infection. It did not concern him too much. He told me I could expect more fatigue - same warning of treatment four. Best of all, he told me I could take some ibuprofen for the lingering achiness resulting from my fall, when I seized last weekend. I have been trying to limit my dose to once per day and probably will not take any more after tonight. I have vicodin prescribed to me too - but I am not a fan. I only take it when I really hurt. I do not want to take it for the consistent, yet relatively minor, aches and pains that have plagued me all week.

In closing this blog entry, I just watched Apolo Ohno struggle for bronze. However, as I type "struggle for bronze" I realize that the announcers are speaking to his brilliance of overcoming his slight error at the start of the race to earn the bronze medal. Later, Apolo reported to the television broadcaster that he lost a lot of speed when he slipped at the beginning of the race. He had to dig down deep in order to" leave it all on the ice". In doing so, Apolo is now the most decorated U.S. Winter Olympian in history. Amazing.

Obviously making mistake and earning a bronze medal is a lot different than making a mistake and being disqualified, as Celski was earlier. I have to wonder if Apolo Ohno had something similar happen to him in one of his prior Olympic appearances - an experience to draw from. Later, after reading that this is Celski's first Olympics. it ocurred to me that it is all in how we learn to overcome our errors that make us great. Experience and dedication. Apolo has an abundance of both.

As I become more versed in dealing with my cancer and resulting physical symptoms, I hope I can channel Apolo's determination and brilliance. I am not thrilled to have this particular experience to draw from...but the only disqualification I want on my front is the cancer itself.

Wednesday, February 17, 2010

No Work, No Problem?

It is 7:35 a.m. The kids are at school; Steve left for work an hour ago. I sit here in my pajamas, slippers and night cap and ponder the day. My body still hurts from my fall. I am exhausted. Emotionally, more than anything else.

Yesterday was my last day of work. I did not plan it that way, it just happened. I knew my seizures were a big indicator of something awry, as if my breast cancer is not enough. When the grand mal seizures occurred on Friday night, I knew it was the beginning of the end of my life, the way I had been living it. When I walked into my office yesterday morning, I knew I just could not "have it all" anymore.

Never in my life have I let my epilepsy have power over my decisions. Obviously, I have always had a few limitations. But, my limitations have been few and far between. Logical. The seizures I had on Friday night were very scary. I imagine those who care for me will be extra cautious in the coming months, double checking when/that I took my medications, etc. I will try not to let that get on my nerves. What bothers me more than anything is this sense that my epilepsy is the reason I had to temporarily walk away from my job yesterday.

I have been told that the epilepsy is not the cause - the cancer is - the epilepsy is just a complication. My body sending me a sign. I think I can go with that. However, having epilepsy my entire life, the epilepsy is what strikes at my core. My epilepsy is what eats at my self-confidence. The epilepsy is visible; the cancer is not. I suppose once I have the proposed bilateral mastectomy, my cancer will become more real to those around me. For now, all they see is a tired, but in control, Marsi with a beautiful bald head (or wig, or hat). Control is the operative word here.

I am trying to stay positive. However, staying positive for me requires a practiced ignorance that I am not sure is possible with out having a job for a crutch. Although, I do have a lot to do. For one, my house needs a lot of work, but being inspired by my house was never my strong suit, especially without a car to follow my inspirations to the store. (I have always been good at the shopping part; not necessarily the organizing part.)

I also know I need to get exercising and ready for my mastectomy. Then again, it seems so ironic to exercise so that you can lose the most attractive part of your body. I realize that gaining strength now will help me heal faster. It is just not exactly a surgery I am looking forward to. (Of course, my breast IS trying to kill me.)

I know this post probably sounds awfully depressing. Sorry about that. Then again, walking away from my job was one of the hardest things I have had to do in my breast cancer journey. But true to form, I will find my way back to the positive attitude necessary to my recovery. I just may need a little help from my friends!

Sunday, February 14, 2010

My Fear, Lived

Since I was six months old, I have suffered from epilepsy. Epilepsy is an odd disease; it is different for every person. I am lucky - mine has been controlled by medication for years, having not had a grand mal seizure since I was 17 years old - until Friday night.

After work Friday, I had joined Steve, my brother (visiting from Portland) and the kids at Harrison's soccer tryout for San Diego United Futbol Club. Harrison was doing great. I was so proud. At the time of the seizure, I was having a conversation with an old friend. The next thing I remember is waking up in the ambulance.

Apparently, I had collapsed like a rag doll. One of the parents hurriedly called 911. I understand, seizures are a scary thing to witness. Steve was holding me and had it handled for the moment, preferring I not take the ambulance ride to Kaiser. However, the ambulance driver looked at him and said: "She has advanced cancer and is having seizures. She needs to go to the emergency room." With that statement, Steve agreed and off I went.

In the meantime, the kids were occupied by the coaches, one of them even jump roping with Madison, in order to keep her busy.

Truth be told, it was a good thing I went to the emergency room. I had another seizure later that night in the ER and as a result (I think), they ran a full work-up of tests. They ran a couple of blood tests twice because they did not get "normal" results the first time. Steve left the ER at 2:30 to get some shut-eye. Around 4:30 in the morning, they moved me to the "F Unit" of the ER where I had my own room. When I awoke again around 7, I knew my parents would be awake, so I called. My brother came down after that to keep me company.

My brother and his wife, Kelly, have been unbelievably helpful through the ER process. Kelly, a former ER nurse and Darin, a social worker, were both on hand, Kelly via phone. Kelly even went through my test results with my nurse yesterday morning!

I saw an internal medicine doctor before I left Kaiser. He said that my Tegretol (this is the drug I have taken for my epilepsy for years) levels were a therapeutically, a little low. He consulted with a neurologist and together, they raised my Tegretol dosage.

So what do I have ahead of me? I trip to my neurologist for sure. Chemo on 2/22. I will lose my driver's license for a time, maybe six months. My family believes I need to stop working. I am not sure that I can do that right now. I think I need to finish out this week, or at the very least, go into work for a couple of days to prepare, dissiminate information and delegate projects. Either way, my life is going to slow down considerably. It has to - these seizures are the biggest warning sign that my body knows how to give.

Tuesday, February 9, 2010

Four Envelopes in the Mail

I know this is my second entry today, but if you read my first entry, you will understand the significance of the mail I received today.

I mentioned in an earlier post about a "card tree" that had been set up by friends at Green Elementary, Evelyn Trivoli and LeAnn Eldridge. The idea that they shared with Steve last week is that I am to receive something in the mail, some show of support from interested parties every day. It has been going on for about a week now, and on average, I get about one a day.

Today I got four. Two were anonymous. Two were not. One had a tea packet enclosed; one a few inspirational rub-on words for placement anywhere of my choosing. All were wonderful.

I am so inspired that I wanted to write to express my thanks. I am overwhelmed by the support of the families of our community. Thank you to Rebecca Dierdorff and the SD United Futbol League who have organized and provided upwards of 20 meals for our family since January. Thank you Charleen Love and Rancho Del Rey Middle for organizing meals at the onset of my cancer diagnosis and through my first couple of treatments. Thank you to my neighborhood friends who are always at my beck and call. Thank you to my mom and dad for everything! Thank you to my brother and Kelly for visiting from Portland so often. Thank you Steve's family for keeping such close tabs on us and being there at every turn. Thank you LeAnn and Evelyn for organizing this latest outreach of support and to all those who participate. Thank you to the Deluca's for bringing the kids to school during my chemo weeks and for calling even on off chemo weeks to see if they need a ride. Thank you to Tom for making sure that our master bedroom remodel was completed so I have my own sanctuary. And this list could go on and on. There have been so many wonderful contributions of heart, hard work and spirit.

My daily limitations I feel guilty about...but the four envelopes I got in the mail today were a great reminder of how blessed and honored I am to be supported by such a special group of people. May I be so lucky as to return the favor one day.

The Lightning Thief, Part II

Percy Jackson and I had a date today. It was a spontaneous plan. No particular destination in mind, but the quietness of my bedroom was ideal. I did not have anything picked out to wear, but pajamas were more than appropriate. Who is Percy Jackson? He is the lead character of The Lightning Thief. Steve need not be interest in Percy is solely based on relating to my ten-year-old son. Besides, Percy is a middle school misfit otherwise know as a Half-Blood (his mother was mortal, his father a god). His life is way too exciting for me! Our date has been successful thus far - I have read more than 100 pages today. More than I have read in one sitting in a very long time.

The downside....I am supposed to be working. I worked yesterday. Had I "listened to my body" and not been so determined (stubborn is another word for it) to work, I might have realized that I should have stayed home. Finally collapsing from exhaustion into a fitful sleep last night, I felt feverish all night long. Because I confirmed a low-grade fever this morning at an hour where fevers tend to wane, I estimated that my fever was likely higher last night*. As I have learned, consistent low-grade fever is an indicator of a dangerously low white blood count. Right then and there, like Percy, I knew it was time to raise my shield and protect myself from the monsters of the world, or in my case, germs.

Hence, my date with Percy Jackson and learning of the exciting world of the demi-gods.

It is hard to explain the guilt I feel about not going to work today. My best guess is the that the immense guilt I feel for contracting cancer and putting everyone that I love through all that they are going through, intensifies the guilt I feel daily over the little things.

I was once told that I have an "avoidance complex". At the time, this was referring to work projects, but I see it clearly now relating to my having breast cancer. I avoid everything about my having cancer as much as possible. The happier I seem, the less I have to admit that I have a stereotypically "deadly" disease. Plus, there are many who expect nothing less than a positive attitude from me and also a few that I only show the positive as my way of protecting them from my new daily grind. It is kind of a double-edged sword. I am not sure if this "mind over matter" attitude is working for me, but as I generally loathe complainers, why would I want to become one?

Still, I feel immense guilt when my Superwoman cape is no where to be found. In yesterday's case, I was completely exhausted after going through the motions to get myself ready for work and driving myself there. After two hours, I had nothing but blank stares and garbled words to offer my colleagues. Should I feel guilty for attempting to go in (putting myself at risk) or should I feel strong because my positive attitude prevailed? And how do I offer consistency to those who depend on me when all I seem to do is consistently misjudge my own capabilities? I have been told to take it day by day. At this point, this seems like a miscalculated attempt to provide comfort where there is none.

So, to feed my avoidance complex, my plan for the rest of the afternoon is to spend more quality time with Percy Jackson. I can imagine Harrison's face when he gets home and learns that I have finished the book. Making him (Steve or Maddie) happy is something I will never feel guilty about.

*It is recommended that chemotherapy patients who have a fever of 99.5-degrees and above, immediately go to the emergency room.

Saturday, February 6, 2010

The Funny Thing About Opera

It is Saturday morning. My house is quiet - the kids are at my parents' house. Baseball and softball are both rained out (we think). Cooper is laying melancholy on the floor in front of Steve, probably missing Harrison.

Steve and I went to the opera last night, La Boehme. I knew it would be a stretch for me to go out at night, four days post-chemo, but as all the operas this season fall at inconvenient times in my treatment, this one was as good as any. (Actually better, than our other two options for a number of reasons.) I spent the day convincing myself that yes, I can do this. Yes, I can get dressed up. Yes, I can stay awake through the performance. Yes, I will wear a mask if necessary. But, as always, during my cancer journey, lingering doubts bang at the door.

Yesterday, I was blessed by visitors and more help. Laurie came and brought a few groceries; Lisa came to visit and brought me lunch; Elena was here cleaning our house; Evone came by with banana bread; the Hays Family (SD United Soccer League) brought us a tasty dinner; and my parents came by with the kids' clean laundry and to pick them up for the night. I am beginning to get used to this. I feel guilty. Then again, I do not know how I would make it through this journey without compassion from others. I also learned this week that parents at Green Elementary have set up a "card tree" for me. So, for the last three days, I have received funny notes and cards in the mail. Awesome. I love it.

Eventually, it was crunch hour. I sauntered to the shower, aiming to dress for the show. Thanks to Steve's family's years of patronage, we have excellent seats for the opera. So much so that "dressing" for the opera is an ordeal, i.e. Steve has to wear at least a sport coat (last night, we wore a tie and jacket!). I think this is the first time I really dressed up for anything, sans cancer. I settled on my black pantsuit, appropriately accessorized with jewelry and a beautiful flower in my "hair". Despite the rain, as we walked out the door, I felt great.

Getting parked and into our seats was an ordeal. Not anything that we could have helped, just the result the rain and a packed house. As we approached our seats, row G, seats two and four, the lights dimmed and the curtain went up. No one was seemed to be sick around me - so my mask could stay tucked away in my purse. The opera goers to our left warned us that the music was so beautiful that they might just hum along.

As the show began and the beautiful music that is La Boehme ensued, I knew I was meant to be right there in that moment, witnessing the great story of friendship and love that I am lucky enough to experience in my life first hand. I felt joy. Even as the lead opera diva succumbs to her illness (someone always dies in every opera), I felt strength. I held Steve's hand. We went for malted milkshakes afterwards and just talked. We needed that. It was a magical night and the perfect culmination of the love and support dawned on me all week long.

Thank you does not seem to say enough to all of you who have helped us in some way....or even simply sent emails of support. I feel like a diva....but this diva will not succumb!

Thursday, February 4, 2010

The Lightning Thief

My son, Harrison, just finished reading The Lightning Thief, by Rick Riordan. For the past couple of years, from time to time, I have tried to focus him on books and stories that are soon-to-be movies, prior to him seeing the movie. I thought this would help him catch the "reading bug". (I have always loved to read - Harrison, not so much.)

Harrison is a great reader and a really smart kid, but unlike my daughter, who sneaks a flashlight and a book in bed with her every night (her "reading job", she calls it), his I-Touch often takes precedence over a book.

So, last night, I was asleep in my bed at 8:30 or so. Into my dimly lit room gallops my son bursting with the news that he had finished this book. "Sorry to wake you up, Momma," he said, "but I finished The Lightning Thief, and I thought you may want to start reading it tomorrow."

Sleep after chemo is a temperamental thing. I had chemo on Monday, hence my 8:30 bed time. It had been a harder chemo than most, partly due to my own carelessness and partly due to my queasy stomach. I was so nervous for chemo treatment number four. That was the half of it. On Tuesday, I was mostly lethargic and slept on and off all day, though I did get out to walk Cooper. On Wednesday, I was feeling much less so. However, like Tuesday, I called on friends to visit and bring me lunch - in other words, make sure I got out of my pajamas. I had only a short nap yesterday. So, when I pulled myself out of my chair to go to bed last night, my eyelids could not have been heavier.

Shortly thereafter, when Harrison bounced into my room, my first thought was: "that is nice honey, now how am I supposed to get back to sleep?" This is not what I said, of course. He was so excited and proud. The movie comes out in two weeks, and he had already shared with me that he wanted to finish the book in plenty of time so that I would have time to read it before we saw it in the theater. Cute thought - Harrison is my thoughtful child - though, not exactly my kind of book. However, The Lord of the Rings was not either and I loved those books and the movies. I thanked him and sent him to bed.

Still in my chemo fog, I dreaded the task at hand. Falling back asleep. With chemo, sleep is not always easy. It is not always restful; especially once woken out of a deep slumber. I just hoped that I could manage enough sleep so I could have a good Thursday. I admit that this morning, I did not wake up nice, that is for sure. But now that I am up, despite a couple of things that have already gone awry for the day, I think I am alright.

I know my plans for the day will leave me exhausted by night fall. And...maybe that is when I can best curl up with a good book, like The Lightning Thief. Sleep or no sleep, the sound of excitement in Harrison's voice last night when came into my room was one of hope, I think, more than anything. Hope that his mommy was well enough to share something with him that he knows I find important--a good book. So, sleep or no sleep, you better bet, I will do everything in my power to be sure that his hope is answered.