Sunday, January 31, 2010

Friendship

I was surrounded by my friends and family this week/weekend. Not completely by design but through a serious of planned events culminating in mostly a 48-hour period. Included in these events were:
  • A casual dinner at the Taylor's - a pot luck last Tuesday - the chili was wonderful!;
  • A fantastic dinner at HASH HOUSE A Go Go (which Steve lovingly deemed Claim Jumper on crack) with two of our closest friends, Jennifer and Andrew Schlesier;
  • A brisk morning walk with one of the smartest women I know, my friend Lisa;
  • A fantastic afternoon of pampering and friends, making me feel like "Queen for a Day", put on by Danielle Kremer and Barbara Miller - WOW! is all I have to say;
  • All topped off by a SOUPER Party at the Garcia's, complete with tequila and Girl Scout cookies.
I am a seriously lucky woman with seriously awesome friends and family. Steve and I are both lucky. (Steve was also treated to an afternoon at Hooley's with Jim Miller and a clan of guys that mean the world to both of us.)

Tomorrow, my mom will be taking me to chemo session number four. I have a nervous feeling in the pit of my stomach. Not so much for the process of chemo itself but because of the inevitable side effects to follow. The unknown is what scares me now. There are many unknowns these days.

However, when I am with my friends and family, my mind is at ease, or at least shift gears. I feel like I am a part of something important, a chain of support that extends past my struggle with cancer. A chain of support that has always been there, but its importance has been suppressed by the mundane of the every day, where I may have been just too bothered to partake. Ironically, now I am hanging on. In the end, I know what ever happens on my journey, this chain is what will save me and it will be this same chain that supports my friends through their current and future struggles. Now, that I see how integral each link in the chain is, how we are all connected, I do not think I will ever let go again.

Below is a picture of Madison taken yesterday by my friend Stephani Dennis. It is so beautiful that I wanted to share it as a part of this blog entry. Please visit Stephani's website for more of her work. I hope you love it as much as I do!


Tuesday, January 26, 2010

It's Good to Go to Work....

It is good for me to go to work. There. I said it. Today, it was especially important.

I have had a bit of a cold lately. Just enough to make me a little more tired and a little more cranky. It is bothersome, but then again, I have been rather enjoying the sound sleep I have been getting due in part to the night-time Tylenol cold medicine I have been taking. Yesterday, I made it through the day OK. However, today, I needed an extra hour of sleep and a slow morning.

Because I was around the house, I decided I should finally call about obtaining a second opinion for my mastectomy. I am lucky to have had some awesome offers from some very special people to help me get a referral for a second opinion. Special people in the medical field. People who know people. That being said, I already knew who I was going to call. Dr. Hansen. Maureen and Galen Hansen lived across the street from Steve and his family since Steve was two years old. Dr. Hansen is a retired gynecologist and as I have mentioned in prior entries, I have spoken with him several times about my treatment, since I was diagnosed.

I have been procrastinating making this call for more than a week. Today, I found out why. Going through the process of talking about my mastectomy in an official manner - its clinical aspects and my chemo treatments - brought back all of the emotion from the day when I first learned I needed to have one. My procrastination was definitely a defense mechanism.

Just when I am ready to crawl under a rock, could have easily convinced myself to crawl back in bed and succumb to my seemingly growing depression, my work ethic saved me. I am so proud of the work that I do. While this pride was not in my actual thought process this morning, there are several work projects that I planned to move forward this week. Not one of them can be completed from under a rock.

My colleague at Rady Children's Chadwick Center for Children and Families emailed at 10:47 last night some information I needed for a grant. Chadwick Center is currently in the throws of their San Diego International Conference on Child and Family Maltreatment. There are more than 1,000 attendees, and I know my friend is working really hard right now to make this conference a reality. Since he cared enough to work into the night to send me the information for my grant on top of all his other responsibilities, I thought that the least I could do was get myself into work today to turn the grant around quickly. Plus, wouldn't it be nice to check something off my list?

So, I did my crying on the way to the office, a little bit after I got there and then, focused on my grant. If I am lucky, it will get funded and Rady Children's Trauma Counseling Program will be able convert its seven standardized assessment tools to a new electronic format, which will help them more efficiently and effectively evaluate and treat traumatized children. Keeping my eye on that prize helped me today. Tomorrow's grant: challenge grant funds for Anderson Center for Dental Care to help Rady Children's cancer patients and their families learn to deal with dental issues that result from their chemotherapy treatments. Now isn't that ironic?

Wednesday, January 20, 2010

Sitting on the Couch

Trying to recover from my cold, I spent a long afternoon and evening on my couch. When I spend any time on my couch, television does nothing for me. I am all about my laptop.

I was tired. I had taken Maddie to a therapist to talk about her anxiety brought on by my having cancer and what options Kaiser may offer. I got some answers. The jury is still out.

Back to my laptop, I started poking around on Facebook. Nothing too exciting going on there. Then, I remembered that I never registered myself with Young Survival Coalition (YSC). There is a local San Diego affiliate and I have met several members. They have events through out the year and even have a Facebook page. Upon registering and creating a detailed profile about my disease, I found one of the greatest assets of YSC - their bulletin board. The bulletin board is full of useful information on everything imaginable. Really useful information. Questions and answers to things that I would not dare to ask anyone. Anonymity is a great thing.

While reading the bulletin board, I came across a member posting that hers, Someday, we will look back and laugh, was the featured blog in CR Magazine. I read the CR Magazine entry. I read her blog. I related. Her last two recent entries particularly affected me. I love her style.

Her last blog entry revealed that her life has taken an unexpected down turn. As I read further, she started writing of blogs that make her laugh. I know I cannot do her story justice. However, the long and the short of it is that the writer of one of the blogs that lifts her spirits, That's Church, is also one of the people responsible for bringing the 53 Haitian children of BRESMA to Pittsburgh.

Having cancer is so overwhelming at times. It is easy to get caught up in the all about me wallowing that I have been told is deserved, yet it still does not feel right. I am glad I spent so much time on the couch today. With all of the reading I did, my world seems a whole lot bigger and my problems seem that much smaller. To quote That's Church, "Haiti still suffers." May we all remember that.

Monday, January 18, 2010

I Won the Chargers' Game....

OK, not really, but I felt like a winner.

Steve and the kids were gone on a cruise this weekend. They were with Steve's entire family, less our nephew Tyler, who has been following his dreams by traveling the world (he is currently in Australia). My doctor, Steve and I made the decision that I should not cruise with Steve's family for infection control purposes. So, Steve, brave dad that he is, joined his family and enjoyed the weekend as a single parent.

This is not why I felt like a winner. I missed them dearly. However, as I drove down to the cruise ship terminal to pick them up this morning, I realized that this past weekend was the first time since I learned of my cancer, where I had the opportunity to be quiet with myself and concentrate only on me. I guess I needed this more than I thought.

Many have doted on me in their own way over the course of the last three months. Everything about all our lives has been about me - in so much as the Holidays, Harrison's birthday and the remodel would allow. The controlled chaos, while wonderful as it has been, keeps my mind buzzing and me pushing forward in a way that has worked for me, so far. However, truth be told, I feel like I have been in an emotional downward spiral lately - feeling a little too sorry for myself and losing myself a little bit. I knew I needed something for me - a girls' night, a date with my husband, just something. I needed it fast and was depressed no one had read my mind and made it happen. (Hence, the feeling sorry for myself action.)

The day before Steve left on the cruise, I cried. One of those emotional outbursts that comes easily these days. I was worried about him going on the cruise by himself, worried that something bad would happen and that Steve himself would come back completely exhausted. However, as my dad and I wished them "bon voyage" on Friday, I felt calm.

I spent Friday night at my parents' house. My parents doted on me hand and foot. Cooper slept at the foot of the bed. My dad and I spent an hour trying to "sync" our Wii fit to their Wii system. I gave a demonstration - even of the hula hoop. It was fun. Back to my house, Saturday allowed a three+ hour nap and I watched movies with a good friend (and colleague) Saturday night.

Sunday was the big game. I made arrangements with the Hansen's, Mark Revetta and the Garlow's to tailgate. Dad and I took the trolley with ease and arrived at the tailgate to good food, good beer and great friends. I felt loved. My dad had fun. We toasted inside the Q. Spirits were high. Watching the game with my dad, my spirit soared.

I came home to another fabulous dinner presented by the San Diego United Futbol Club. (Greek food was also provided on Saturday night - yum!). I was so astounded by both meals that I had to invite my neighbor over Sunday to feast. People's generosity continues to amaze me.

All in all, despite the fact that I missed Steve and the kids, I had a fantastic weekend. Though, I still do not feel all that great physically - I need a nap right now. However, thanks to family, friends and fellow soccer parents, I feel like I was the real winner this weekend, not those stinkin' Jets. So, the Chargers lost and I missed a family vacation....there is always next year.

Thursday, January 14, 2010

What would The Edge do?

I woke up this morning feeling much the same as yesterday. Lethargic. I slept like a rock last night. Adavan and vicodin did the trick! Because I slept seamlessly, when I woke up lethargic, I was mad. Mad at my body for being so weak. Mad that I still have three more chemo treatments to go. Mad at myself for my last few melancholy entries in my blog.

I got dressed slowly and contemplated my day. As I put on a blue and gray striped beanie, I was reminded of one of my favorite bands of all time, U2. In particular, I thought that my beanie looked like somthing that The Edge would wear and the thought crossed my mind: what would The Edge do? Any U2 fan knows The Edge. He has that tough exterior and talent to rock the U2 stage, but at the same time portrays the gentleness of the U2 ballad. His persona is strong and strength is what I am looking for these days.

I got the kids off to school OK and in doing so, had an idea. If I was not up for going for a walk - the idea really has no appeal to me at all at this point - I still have to move. I cannot imagine that there would be any benefit to the poisons that are diligently working on my cancer sitting sedentary. So, I had the kids turn on the Wii Fit. I started out with the balance games. I have done 15 minutes so far.

After that, I started picking up the front room. The kids' domain has gone unchecked for way too long. I try not to go in there at all, really. But as I want to make the Wii the focus of the rest of my week, I knew I had to carve myself out a spot. Then, it was on to Christmas presents still in the living room. (Yes, there are Christmas presents still in the living room!) I did not get too far with these but still, definitely made progress.

So, now I am tired and am back on the couch but am not as mad anymore. I took back some control. I think that is exactly what The Edge would do - he just has a little more hair sticking out of his beanie than I.

Wednesday, January 13, 2010

Mastectomy, A Reality

My mom and I went to see Dr. Duree, my oncology surgeon today. On the up side, she can tell by my blood tests and talking to me that I am doing remarkably well on chemo. During her examination, she said that the lymph nodes on my right side that were once so prominent are not. She went so far as to state that if she would have simply read my diagnosis and felt the nodes, she would have been speculative of the diagnosis.

All that being said, a strong proponent of breast preservation, Dr. Duree is recommending mastectomy. The PET scan that I had prior to the start of chemo showed that my breast tumor was too close in proximity to the muscle of my chest wall to warrant a lumpectomy. Dr. Duree went on to explain that with the tumor having resided at one point close to the muscle, there is chance of micro disease in the muscle of my chest wall - something she cannot examine without performing a mastectomy. This I understand - I was just not prepared to hear.

When I first started this journey, I thought of my breasts as appendages who had already done their job - merely an a part of my anatomy. My journey became more real when I lost my hair. I mourned my hair in a way I never expected that I would. When my hair was all gone, I told several confidants that I do not know how I could ever handle losing my breasts after what I went through with my hair, where I had mostly put on a brave face and smiled. Today, my face was not so brave. I cried. My mom cried. Dr. Duree was nearly in tears. Steve came home from work to be with me.

There is still time for second opinions. Although, surgery looks like it may be at the beginning of April. Dr. Duree feels strongly that surgery should occur two weeks after chemo ends. As soon as my white counts are back up. Since chemo does not end until March 15, I have time to sit with this and hopefully come to terms. I will try to do my best to put on a brave face and go back to the thought that they are just appendages. People do this every day and are happier and healthier for it.

An update on the chemo side of things...two days out and I am positively wiped. I feel like have done nothing but sleep. I was much more active the last two times around. I did enjoy Cocoa's this morning with mom and the visit to the Charger's store! Got some great new gear to wear to the game on Sunday (thanks, Mom!). Yes, I am going - chemo will not keep me away for sure! Go Bolts!

Monday, January 11, 2010

We are all in charge of our own happiness...

A great reminder from my good friend, Teri. We are all in charge of our own happiness. Right now, my happiness includes Claimjumper's Chocolate Cake and a glass of ice cold milk. I had chemo today, so I am not quite sure how my stomach is going to handle this decadent piece of heaven. Hopefully, the milk will help ease the affect on my stomach and and if I eat is slow enough....We also had our first meal organized by the San Diego United Futbol Club, dropped off tonight by the Gofigan family. We ate well and have plenty of leftovers. It was delicious.

Chemo today went well. My nurse was Remy. My white count was 3.7 back up from 1.9 that it was the day after Christmas. Normal is between 4-11. Remy said that whatever I was doing to keep doing it. I guess that means my hectic week and weekend worked for me. I guess that is a good thing.

Remy also said that my skin looked good, when I asked about dehydration pointing out to her that my finger tips are extremely dry. (I have heard that problems with my fingernails could possibly ensue.) Remy said that this is natural progression and if I notice numbness to call Dr. Sweet.

The only unfortunate part of the experience was that the pharmacy was slow in getting my meds ready. So, we got a late start. After we got started though, things went according to plan. Steve went out and got us lunch. The french fries tasted so good. However, the not so healthy meal was instrumental in bringing about some nausea for me during the latter part of my treatment. It was worth it though! They gave me a little bit of Adavan and I started to feel better.

This evening, I am more lethargic than I have ever been. I would like to think that it is from the extra dose of Adavan. However, one Adavan does not usually cause this kind of sleepiness. It takes at least two for me. I am more inclined to think this is just the chemo and the fatigue beginning to increase, as Dr. Sweet said it may.

As it is 9:05 at night, I think I am heading to bed soon, not certain of what tomorrow will bring. In the end though, Teri's right, I am in charge of my own happiness. No matter how I feel tomorrow, I will find some joy in my day.

Chemotherapy - Session 3: Presession Jitters

Today, Steve and I head off for my third chemotherapy session. I write this morning because I am having a hard time expressing my anticipation of my next four rounds of chemo. Specifically, considering these rounds have cumulative side affects and fatigue. Because I know this, I am as nervous as my first round when I knew nothing.

Round one, I managed my symptoms well. I like to think I got some techniques down. Round two, I managed my symptoms well too, and I think I nailed down a few more techniques for managing chemo's side affects. This past week, I felt the best I have felt in two months. With both of these sessions, I had traumatic events which counterbalanced how well I seemed to be doing - my hair loss and Christmas events. My previous blog entries thoroughly explained these challenges...so I will not go into them here. However, as I head into chemo session number three, I have to wonder, when is the other shoe going to drop?

Growing up with epilepsy I have learned to remain positive and above all else do not use my medical problems as excuses for living a normal life. I think this why it is hard for me to consider that living with cancer may just be a good enough excuse to accept help when offered and even more so, to reach out and ask for help for what seem to be simple chores.

I gave my brother a poster years and years ago of a beautiful silhouette of an elephant with the phrase under it "Seeking Solitude." I have to say that I think of that poster often these days. For this is the other caveat to asking and receiving help from others. I really like to be alone with myself sometimes. I often gather strength this way. So, I am consistently torn with wanting space yet asking for help that may bring people into my space.

Please do not misunderstand, if I have arranged for someone to come over and help me, I am extremely grateful and have come to peace (sorry if this sounds overly dramatic) with not being alone for that period of time. However, back to my not using medical issues as an excuse, thoughts also cross my mind like: "I should be able to do the dishes, cook, do laundry, vacuum, take care of my dog, etc. Those are simple chores. Is it obnoxious to let someone else do it?"

What I keep coming back to is how I feel in that moment of that day. Maybe this is my time to just sit and have an excuse. Maybe not. The fact is though, that with Steve going back to work, we are going to need the help. We just need to figure out how/when/what. And I need to get over myself a little, too.

We are blessed by our community responding to needs that sometimes we do not even realize that we have. I am lucky that as I head into chemo today, I have confidence that my family's needs will be met - normalcy will exist in my household. I just wish I could predict how much I will be able to provide.

Friday, January 8, 2010

Sleeping Isn't Everything

I had an oncology appointment today. Dr. Sweet was running late, which was a not problem, unless you are hungry. The nice part was that we were his last appointment before lunch and he was generous with his lunch hour.

Dr. Sweet asked what seem to be the usual questions - how am I feeling? how am I handling my symptoms? I have to say that it felt really good to go to the doctor with minimal complaints. Chemo is going well. I am managing my symptoms well, and I had fewer side affects this past time around than the first session. Not that I feel perfect...but most people do not. (Unless you are 25 or younger and even at that age, you are too naive realize how good you are feeling.)

The one thing that I did complain about was my ability to stay asleep at night. I have a prescription for Ambien...but it gives me nightmares. As it turns out, Dr. Sweet feels the best choice for me is to double up on my Adavan at night - not to take an additional narcotic. He says that there is no "magic drug" that will help me sleep. Adavan is old fashioned, but I am getting the feeling that Dr. Sweet is too. Dr. Sweet further explained that chemotherapy is so disruptive to the system that even a oncology physician who suffered from cancer at one point, reported that she knew every television show that aired between midnight and 6:00 a.m. I have to assume she had access to several different types of sleeping pills and tried several options.

Dr. Sweet joked that maybe I need to do more. "Do some laundry!", he exclaimed. "Maybe even a dish or two. Cook dinner." Now, I know he was mostly kidding but part of me knows there is a lot of truth in his words.

I have great respect for Dr. Sweet. I trust him. If he says not sleeping is normal, I have to believe him. As long as this cancer thing keeps working its way out of my system, I guess sleeping isn't everything. (And I do sleep...just not as soundly as I would like.)

On another note, he suggested I see Dr. Duree, my surgeon, next week. I have an appointment on Wednesday. I like her too. I am hoping that her examination and/or any tests she orders will confirm that chemo is working, thus postponing surgery until Spring. I will keep you posted.

Wednesday, January 6, 2010

Coping is Attractive

Today, I worked. Not only did I work, but I worked on five different projects. My hands were full. My brain was racing. I was shuffling papers, analyzing strategy and making recommendations. It felt great. It felt normal.

However, this was my third day in the office. My third eight+ hour day out of my house, with no down time to recover. While once routine, and more at a 10+ hour day, I was exhausted. None the less, thriving on an enhanced sense of accomplishment, I pushed on.

I also visited the hospital today. It gives me a sense of peace to actually step foot on Rady Children's Hospital's main campus. It reminds me why I set out to accomplish my goals at work. It reminds me that I help children, and I feel proud.

My reason for visiting the hospital today was not to give a donor a tour, or to do some research on a new grant project, or even to attend a meeting. My reason for being at the hospital today was for my children to see a child life specialist - a child life specialist who could help evaluate how my children are handling the fact that I have cancer. Heidi did not disappoint. The kids loved her, and it is obvious that children are her passion. Again, I remain grateful for the support of my Rady Children's family.

While at the hospital, I ran into one of my trusted colleagues. She knew I was ill but I had not told her - Rady Children's Hospital grapevine, I suppose. (I do not mind it so much.) We only spoke briefly. However, she had some great words to heed by for difficult situations: "you can either cope or not cope, but not coping is unattractive."

Tomorrow, I will go back to work and hopefully work on five projects at once, make more recommendations and analyze more strategy. And, as I get ready for chemo next week, Steve, the kids and I will continue to cope. It is so much more attractive.

Saturday, January 2, 2010

The Unreal Truth – Thoughts from a Husband

I married my beautiful bride 13 years ago. That day was the best day of my life. A normal November day this year was the worst.

It is a feeling of unreal truth to learn that your wife has breast cancer. Emotions such as fear, dread, worry, and anger rush through you as multiple questions come to mind about what to do: “How could this have happened?”, “Isn’t she too young?”, and “How is this going to affect our lives?” are a few. Questioning and complaining will not change a thing. All that matters is how will I get my wife 100% cancer free.

Marsi has already discussed her Cancer treatment using Chemotherapy, so I do not want to focus on the treatment itself but rather the effects of the treatment. This is where it is the hardest for me. Hardest because I am helpless. For the first time, I, the husband, can not help my wife. I can not just wisk her away from all the fear and pain. Instead, I am forced to helplessly watch my beloved suffer. Aches, pain, nausea, loss of hair, exhaustion are all normal for her now. It has become a day long battle for her to find, in a word, comfort. Chemotherapy may be the cure for cancer, but it is in no way a quick fix. It is a long, drawn out, painful, multiple symptom breakdown of her body that physically and mentally tears her down – this is what I have to watch my wife endure. And watching your loved one go through it, is absolutely horrible.

This is where love, friendship and positive thinking come in. No cancer patient needs any negative feelings or sorrow around them. They need love, support, family and most of all, humor. I feel the best thing I can do for Marsi right now is keep our family running as usual. Keep as much normalcy in our lives as possible. I have to show Marsi that I have no fear and no doubt that she will get through this. Marsi needs this from me. She depends on me to be strong at this time, more then ever before, because I am her shinning white knight, her punching bag, her shoulder to cry on and her partner.

Friday, January 1, 2010

Welcome 2010!

Wishing you all health, wellness, laughter and lots of love in 2010!

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