Saturday, June 26, 2010

Radiation, Week Three

Radiation, week three - check! I am tired. Very, very tired. My skin is starting to show some signs of trauma - just really small bumps right underneath my collar bone. At least, the weekend will give my skin a little time to recover. At the beginning of the week, I was trying to go to bed early - like before the kids. Towards the end, I did not fair as well, in that respect.

I am really trying not to let radiation get the best of me. I was sad to miss my friend's birthday party this week and since, vowed not to let the fact that I am tired limit my participation in the important things. However, I recognize that I need rest, so I will not be a cranky mommy and also, in order to be productive at work. It is just a balancing game, like anything else. It is a game that I am winning!

At work yesterday, I had one of my most productive days in a long time, completing one grant, one letter of intent, two signed grant agreements and communicating with two other of my most favorite/prominent donors. I remind myself that a day like that would have made me tired regardles of receiving radiation treatments. It has been a busy work week, but I found that it helped me to not dwell on my physical symptoms.

The best part about this week is the surprise visit from my great friend and college roommate, who contacted me Monday just to see if we were going to be around, should she and her family come to San Diego. Great fun. Today, one of my other college roommates will be in town with her family. A complete coincidence - what an awesome treat for me! Our kids get along famously, which makes it even more special. And the fun continues, culminating with a trip to Legoland this coming Tuesday.

Just as fun as all this though has been watching the World Cup with my son/family. I love the way Harrison gets so excited to watch the games. The US played at 7:00 a.m. this past Wednesday. We woke up at 6:58 and it was like we were late for Disneyland or something, with Harrison rushing to find his US soccer jersey in order to watch the game in our own living room.

And my daugther? She is not as excited about the World Cup. Though she did lose her two front teeth this week. A right of passage, in her mind. She is too cute for words sometimes.

So radiation will ensue on Monday. I am trying to stay positive. This past week, I have had quite a lot of help. Next week, I know I will find another avenue of distraction, whether it be World Cup, Legoland and/or a good book. I am winning the game! July 13, my last day of radiation, is just around the corner. The countdown is on!

Saturday, June 19, 2010

Radiation, Week Two

I finished week two of radiation yesterday...week two, less one day (I started on a Tuesday). It has been a hectic week. Nothing too out of the ordinary. Though, the stress of work certainly had me ready for the weekend. I am really trying to take a back seat and let my boss make the decisions in my area of expertise, Foundations and Grants. However, I see things that need to be done and I do them. In the past, he counted on me to make recommendations, consult on department-wide on projects, only consulting him for big decisions and to let him know what projects I was working on. This was all within reason of course. Bottom line, I was accountable to him for all business to do with foundations and grants. Now, he assigns me a list of projects....and I just give him progress updates.

By my own accord, my list of projects is growing, though I am trying to abide by my limitations. I work at the office on Monday, Wednesday and Fridays. I work from home as needed on Tuesday and Thursdays. This past Thursday, I was just too tired to work, even though grant deadlines and other work worries deprived me of sleep the night prior (which may have been why I was too tired to work). The old Marsi would have found a couple hours to work, regardless of how I felt. I did not. I opted to read my book and watch Harrison practice soccer in our backyard. I did good.

So....onto week three of radiation, this week. I am a bit tired. My skin is still doing ok, though I learned the hard way on Thursday how sensitive it is when I inadvertently got sunburned after reading my book outside. Ouch! At least I have the weekend to heal.

I met with my radiation oncologist on Tuesday. She told me that my worst side affects will occur the two weeks after radiation ends. Hmmm.... My last day of radiation is July 13. I am not so excited about dealing with this stuff into August. Steve and I also met with my neurologist on Thursday. Apparently, my EEG shows significant improvement over my previous EEG. Since I am epileptic, as expected, it is still abnormal but improvement? Wow, maybe the chemo had an adverse effect on my epilepsy? Another hmm....

My job for the weekend is to sleep and to make sure that Steve has a great Father's Day. In honor of Father's Day, my friend suggested that we all change our Facebook profile pictures to a picture of our dad. I found a picture that I liked so much that I thought I would share it here too. It was taken at Christmas after my third round of chemo. (By the way, unlike this picture, my hair is coming back in full force....not enough to share a picture here, but hopefully soon!) Included in the picture are myself, my dad and my brother. I love my dad! He is such a great person and my hero, really. Well, both of my parents are my heroes. But this picture is how I always think of him, smiling. Happy Father's Day, Dad. I love you!

Saturday, June 12, 2010

Defense

I was devastated as I watched Harrison hug my mom last night, tears running down his face. It was a hard game to watch, especially knowing that to advance in TOC is something that Harrison wanted so badly.

Baseball. It is so much different than soccer. During soccer, kids get the chance to make 100 or more good plays a game. Well, maybe not 100, but sometimes it comes close. In baseball, not so much. In soccer, Harrison plays every position. He loves to play goalie, or "keeper" as I have learned is the preferred phrase. But his speed and dexterity also lend themselves to forward and sweeper. However, I think he is a natural defender. Put him in fullback on the left side (he is left-footed) and not much is going to get past him. He makes impressive defensive plays.

I felt like that is what he was doing yesterday in his baseball game. Defending. The other team was aggressive. They were playing with intensity and spirit. Opportunities to make those great plays come few and far between. Harrison's team needed to make more of them. Though they rallied, in the end, they fell short.

As I previously mentioned in another blog entry, his team was the SCLL Minor League Champions last year too. They did not make it past the first week of TOC play last year - I think this made Harrison even more driven to make it past the first week this year. Harrison laid his heart on the line. He fought hard, but in the end, popped up his last hit and it was caught in the infield, resulting in out three of the sixth inning. Game over. The Mudcats are not advancing. His heart was broken, at that moment. My heart broke for him.

When I was putting him to bed last night, he looked at me and said, "There is still a chance that we play Monday, right?" There is still a slight chance, based on a complicated calculation that I do not know enough about to explain. (Essentially, there is a three way tie for 2nd place and the top two teams advance.)

His hope is my hope. And there is plenty of that to go around.

Reflecting back on my experiences of the week and in particular my radiation therapy, I realize that hope and defense have been an every day practice for me. As the best defense is a good offense, I slather salve on my skin whenever possible. I also started going to bed at 9:00 p.m. This is very early for me....so, it also means that I have been waking up at 4:00 a.m., having already had what my body feels is a good nights sleep. However, if fatigue sets in, I have already implemented a preemptive strike. I am also taking my vitamins. Or trying to remember them anyway. My memory for this kind of stuff is not fantastic.

Interesting thing, I had a skin care session with a nurse this week, who told me that my worst side effects will occur in the two weeks after radiation therapy ends. Ugh. Obviously, I knew that the side effects were cumulative my skin would take a while to heal...but this means that the harsher side effects may last into August.

I am doing well, however. If there is anything I have learned from Harrison, it is that defense and hope are not mutually exclusive. My success will require a balance of the two. I can do that.

Moving forward, watching Harrison play soccer is one of my favorite things to do. He just left for an indoor soccer game this morning, as a matter of fact. (Go United!) I know it will lift his spirits. Baseball is in the past now...and he will focus his ambitions towards the upcoming soccer season. My little defender. My little princess is sitting next to me on the couch, singing. All is right in my world. Only four more weeks of radiation...and counting.

Tuesday, June 8, 2010

So today is Steve and my 14th wedding anniversary...

So today is Steve and my 14th wedding anniversary. It is also my first day of radiation therapy. A bit ironic, I think.

I was prescribed 25 radiation sessions that will occur five days a week, for five weeks. They are radiating the right side of my chest wall and my remaining lymphnodes, which reside under my collar bone. After having my first radiation therapy session this evening, I do not have much to say about it. It did not hurt, though I did feel something. I would equate it too one of those times where at days end you may say to yourself, "I think I am a little sunburned", but it does not really hurt to move. One of those sunburns that would not classify you as a lobster and is gone the next day. Something like that. However, side effects from radiation are cumulative, just like chemo. I guess it is good thing that I am permanently numb (for the most part) on the right side of my chest.

Anyway, I have decided to treat radiation as if it were just a normal part of my routine. I have a theory that if I make a big deal about it, I have given radiation power and its side effects will intensify. Please know that I appreciate offers to help in any and all capacity - but I am going to try this on my own first, as least the transportation and routine part.

And, if you ask me how radiation is going. I might say, "fine" or "it's going". Not that I am asking you not to ask, I just do not want you to be surprised by my answer. I am trying not to get in the habit of complaining, because I do not think it helps me, or anybody else.

So yes, I may be too tired from time to time. Or I may not be able to go to the beach and sit in the sun. But please ask. I will let you know.

And, happy anniversary to my beautiful husband. It has been a tough year. I know this is not exactly the way he envisioned spending any of his days with me, much less an anniversary. Yet, he has been my champion through it all. If you know Steve, you would expect nothing else. I am truly lucky.

Saturday, June 5, 2010

Harrison and the Mudcats

I am so sore this morning. I knew I was tense yesterday at Harrison's championship baseball game, but holy cow!

I write this post this morning, thinking not of my cancer or radiation but about my son. Harrison is 10 years old. He is the light of my life. Madison too. Last night, however, Harrison stole the show. For those of you who know Harrison, you know that Harrison has an inherent, natural athleticism that allows him to hold his own at about any sport he tries. Last night was baseball's turn - championship game for San Carlos Little League's minor division: the Mudcats vs. the Riverdogs.

I cannot say that Harrison made any remarkable plays. I can't say that he hit a home run or made a diving catch. Like in every game though, he hit, he threw, he caught and did his job very well at every position he played. He has the third highest batting average on the team. He has a great arm and is consistent.

Last year, Harrison played for the Durham Bulls and they won the league championship. Last year, Harrison was the pitcher they put in the close the game, with bases loaded and a score of 19-18. We prayed. Harrison did his job, the Bulls defense did their's. The Bulls won. There is no better feeling than that.

So you might imagine how Steve and I were feeling last night. The score was 12-12 and Harrison was the next pitcher in line. But that was not the worst part. All season long, Harrison's team has had a remarkable way of falling apart (sometimes a little, sometimes a lot) for an inning or two and then pulling it together and winning the game. This is not every game, but of course, this is what happened during last night's game. Finally, in the 7th inning, which is overtime in little league play, one of Harrison's teammates stole home and we won the game, 13-12. Us parents started breathing again. Harrison never had to pitch.

I wanted this win so bad for Harrison and the Mudcats, a desire even more intensified by the fact that he was on the winning team last year and would be the only one from the Bulls that achieved this accomplishment this year.

I am so happy for Harrison. He is a champion - two years and a row. Now, we move on to regionals....and Harrison is pitching on Monday night. He needs to pitch the game of his short career. Since he did not have to pitch in regionals last year, this is a new challenge! Count on me and Steve not breathing while he is on the mound.

As I sit here and write this, my family is waking up. My daughter just came downstairs and apologized to my son for being "late". Late for cartoons, I guess. So cute. And even with my sore body and the fact that we have to race off to Harrison's indoor soccer games this morning, I am happy. Cancer be gone and stay that way, please. Yesterday was just a great reminder that life goes on....and so will I.

Thursday, June 3, 2010

I visited the radiation machine today....

I visited the radiation machine today. I had a "mock run" of my radiation therapy. They lined me up. They took x-rays. The doctor gave a sign of approval. I stared right into the mouth of the machine where the radiation will emanate. It looked like it had teeth, as it stood ready and waiting to zap its electronic medicine.

Lying there, perfectly still as instructed by the technicians, alone in the room, the moments felt like an hour. I was emotional, fleeting as it was. I made myself take deep breaths. I thought about how I did not want to go back into treatment. I thought about the cancer and how it was gone. I thought about the beach. I thought about Steve and the kids. I thought about my beautiful skin and what I am about put it through.

I know radiation therapy is the right decision for me. Cancer is a beast. Much more ugly than the machine I laid under today. Not at all discriminating. It does not have technicians that line it up in the perfect spot. And in my case, with my type of cancer, if it comes back and metastasizes, outcomes are not good.

So, radiation is definitely the way to go. I just have to get there. And I will. Emotions in check.

Tuesday, June 1, 2010

Radiation, here I come!

So, I have to get my game face on. Radiation starts June 7 and plain and simple, I do not want to do it. All the tests/studies say that I should...and in my head, I agree. Just the mom, the wife and the girl in me is just done. I am tired.

I went back to work, part time on May 20. I am working three days a week for 24 hours in total. It feels good. I like feeling useful. I like knowing that cancer and chemo did not over run my brain entirely. In the week and a half that I have been back, my muscle memory is returning. I still know how to write at the same caliber as before, and I am comfortable with the grant process. Just like riding a bicycle. I am working on a couple of great projects and thriving.

Today, I have a couple of doctor's appointments unrelated to radiation. I have an EEG at 1 followed by an appointment with my plastic surgeon at 3:30. My EEG will put me one step closer to keeping my driver's license and our meeting with my plastic surgeon will help us verify that the plan for my reconstructive surgery that Steve and I have mapped out in our heads is truly on the right track.

And yes, I said keep my driver's license. I have a driver's behind the wheel test on June 30. Last week, I called DMV due to the fact that the paperwork said, "Your license will be suspended if you do not show up." Turns out, they never suspended my license at all since I had the seizure on February 12. Hmm. This does not change the fact that my neurologist recommended that I do not drive. However, in my mind, it does give me "license" to drive occassionally. Afterall, I do not want to go to my driver's test cold. I had enough trouble with that the first time around.

So, I need to get my game face on. I know my driver's test will be just fine. I know radiation will be just fine. Before chemo, to help get me fired up, us girls all put purple streaks in our hair. I do not have enough hair yet to do that. Although, after leaving Ally's shop after getting her hair cut, Madison told me this weekend that she wants a red streak in her hair. Another hmm. Not sure that I am down with a permanent red streak in my six year old daughter's hair.

Anyway, not sure what it will take to get my mind where it needs to be come Monday...maybe nothing. Maybe just another wonderful date with Steve, like I had this weekend (Thanks, Mom and Dad!). Maybe another good conversation with a good friend, like I had with my friend Barbara yesterday. Maybe Lahaina's. One thing is for sure, I will get there. I have no doubt that on Monday, June 7, I will be ready for my next therapy that will finally kick cancer to the curb for good.