Monday, August 31, 2009
I have been calling chemo "poison" and my PT said that I shouldn't call it poison because of the negative connotation associated with that word. So I have been thinking of a possible replacement and I think I finally came up with it..."slightly-toxic remedy." So, rather than think of this as poison, it is my slightly toxic remedy to a relatively serious affliction. It has a much more positive twist to it, don't you think? I mean, it relates the seriousness of the issue without saying those yucky words - chemo, poison, cancer. So, in my continuing efforts to walk this road with a more positive attitude, I am changing my self-talk. I mean, the brain, it listens. You gotta feed it good stuff or it'll make up its own negative story!
I've been working some long days the last few days, trying to get everything caught up during the three short days I work. And, this is a slow month! But Wendy is starting to learn more. She has a vacation coming up and when she gets back she hopes to be able to focus full time on working with me. That should continue to take the pressure off, yet I'll still be able to continue to work. That means alot to me, to continue to go to the office and live my life and feel useful. My boss has assured me that my job is mine as long as I can do it. He doesn't care if I have to work like this for six months, my job will be waiting for me when I'm ready to come back. That is a pretty special gift to someone who is battling this type of ailment. Like he related to me the other day, I got enough to worry about without wondering if my job will still be there when I get well. That is a huge relief and a incredible burden lifted off my shoulders. How lucky I am to work for Rand at Kadlec. I don't think everyone who is facing this type of uncertain future can say they definitely have a job waiting for them when they get done with their slightly-toxic remedy.
I'll work tomorrow and then its to the doctor on Thursday to talk about path forward. I'll know a little bit more after my visit with him on what we are going to do next. I assume, more slightly-toxic remedy, but how many rounds, I'm not sure. Two? Three? Four? Then, what happens after that? Once the remedy is successful, then what is the medical path forward? I haven't asked about that yet, I've been focused on the here and now. But whatever it is, I'm ready for it. If the medical personnel can dish it out, I can take it. Whatever it takes, I'll beat this thing.
I'm in this for the long-haul. Watch out world, you ain't getting rid of me that easy.
Sunday, August 30, 2009
But I guess if this can bring me to a place where I can have my next chemo, then that is the point. As much as I want to live a "normal" life I think I have to resign myself to a new type of "normal." My normal is fighting this disease. That is my life. I live between treatments and blood tests. There are other things I want to focus on, my relationships, my friends, my family, my work, my home, but this cancer is like the proverbial 800 pound gorilla in the room. No matter how much you try to ignore it, its always there, in the middle of the room and you can't get around it without noticing it and acknowledging it. Its always there, right in the middle of everything I do. And everyone that interacts with me sees it too. They know that I am still me, but I am sick and I have...cancer. When you have cancer people treat you differently. Not in a bad way, I am terribly spoiled by my friends and those who love me, but the cancer is always there. I should count how many times a day I review my current medical status! "How are you" takes on a whole new meaning when you have cancer. And I want to share how I am, because I believe, people really want to know how I'm doing. And what a gift it is to have so many people that care about me. Its amazing and humbling. But I can't wait for the day when I can answer "How are you" with "GREAT" and then go on to the rest of the conversation.
So I have to shift my perspective and my definition of what my normal life is and simply accept the fact that normal has changed. I'm going to be sick and tired for the next few months. Get over it and deal with it, it could be worse! Remember in the movie Moonstruck when Nicolas Cage tells Cher he is in love with her and she slaps him across the face and tells him to "Snap out of it." Well, that needs to be my mantra - snap out of it Patty - you have to go through this for awhile first, and then you can have your other life back. You have to live through the tests, chemo, side effects, deal with side effects, have more tests, chemo...and the cycle just runs over and over. And while I am dealing with this cycle I keep my eyes focused on the prize, the end, the outcome of all this suffering, the day when it is all over and I get to quit chemo and find a new normal life. Because I am fully aware that metastatic breast cancer changes your life forever. I will forever be dealing with this is some way, I'm just looking forward to the day when it isn't in the center of my life. And until then, well, I'll just have to snap out of it!
Saturday, August 29, 2009
Life is a lesson in resiliency and hope. I am as guilty as the next person throwing my expectations out there to the universe and expecting them to come back just the way I tossed them. But the universe does something when it gets a hold of those expectations. It puts its own twist on them and when they come careening back to us they frequently don't even resemble the ball we tossed in the first place. That's where hope comes in. I like the quote "life may not be the game we expected, but while we are here we might as well play." So things don't turn out the way we planned, does that mean we just pack it in and give up? I would hope not, because HOPE is what keeps us going. Life may not be the game or the party or the adventure we expected. In fact, the odds are it is NOT going to be what we expected. So, play anyway. In keeping with the baseball metaphor, you never know what is going to happen in the next inning. Pitchers change, their arms get tired, the ump can't see, every ball is made a little differently, so you can't be sure what the next pitch is going to be like. So play anyway. Play hard, play with enthusiasm and keep your heart in the game.
I know I didn't expect this cancer. When I tossed my expectations out there, I was not expecting a curve ball to come back at me on the next pitch. But it came anyway and I had to change the direction and the expectations of my life. And its not easy sometimes. But I keep the hope and the faith and I get my little successes along the way, like yesterday's CT scan. I AM getting better. And that gives me the hope that I need to keep playing the game. I'm up to bat and I am not sure what pitch that pitcher has in store for me, and I'm not sure what the umps strike zone is... but I think I'm gonna swing. I may just hit a home run this time.
Friday, August 28, 2009
Mike caught up with Dr. Iuliano earlier and they took a quick look at my CT and the preliminary results show a marked improvement. I am not out of the woods yet, but I am headed in the right direction! Thanks for all your prayers and keep praying. This is certainly good news!
I am planning on having an awesome weekend. Good news and new blood, I'm going to feel great!
I spoke to my doctor yesterday and she is very surprised I am feeling as good as I am and that I was even thinking about going to the fair! Apparently my red cells are not doing well and, in fact, are at a critically low level. My platelets, hematacrit and hemoglobin are all critically low, requiring a blood transfusion. Yeah, that's right, a transfusion. That explains why I have been SO incredibly tired this week. I have been assured that I will feel MUCH better after the transfusion. So watch out world, Saturday is going to ROCK for me! I am going to have so much energy and feel so awesome! I can't wait!
So my day looks something like this...
I just finished my breakfast, cereal and melon, the last food I can have until after my CT scan. I am finishing my coffee, the last drink I get to have until after my CT scan. At 8:15 I start drinking the contrast liquid and will drink it for 3 hours prior to the CT. Before my CT I need to run to the lab to have some blood drawn so they can do the type and cross for the transfusion. Then its off to the CT, and as soon as that is over, we will (hopefully) run over to Dr. Iuliano's office and get a quick look at the scan to see what is up and how I'm doing. I need to be at outpatient oncology at noon to start the transfusions, they are planning on two units, which will take 3-4 hours. So I'm taking my knitting, my computer and my book. I'll be right there at Kadlec, so I could probably get some work done! I have a physical therapy appointment at 5pm which I should be able to make, so should finally be home around 6pm. Whew. I feel tired just thinking about all this!
I am hopeful that everything will go well today. Mike will be there with me every step of the way and I thank God for his fortitude. I really lean on him, he is my rock and my strength. When I have nothing left, he gives me all of his. He never falters, never moves away, he stays unchanging, uncomplaining and strong. I don't know how I would have made it through this without him. I am so grateful that he is in my life, I have to get well so I can spend the rest of my life thanking him for taking such good care of me.
Prayers for a good CT and a safe transfusion. I'll post all the results later today.
Love, peace and hope for a great tomorrow!
Thursday, August 27, 2009
Dave and Susan Wood were kind enough to hire Merry Maids to clean my house yesterday and wow, is that nice. I could get used to that! I had a gift certificate from my friends in physician recruiting a few weeks ago and had the house cleaned when I was at the coast and I came home to a sparkling house. Last night I worked late and when I came home, the floors and furniture were just shining! It is a pretty awesome gift. I was looking at my hard wood floors just a few days ago and thinking, wow, they really need cleaned. And now, they are perfect. So, I can take that time and energy that I would have put into cleaning and put it into healing. What a gift.
I can't say how much I appreciate all the nice things that people do for me! I've said it before and I'll say it again, I am one lucky lady. I have such an awesome group of people who love and care for me, I am truly humbled by all the cards, gifts, flowers, food, cleaning, phone calls, emails... the list just goes on and on. People are so nice, and someday I'm going to pay this all forward. I'll take care of the next person and they can take care of the next and so on and so on. I think that is what God intended us to do, to take care of each other. So just remember whenever you do something nice for me or anyone else, we can pay it forward to the next person. That way the gift keeps on giving over and over and over. That act of kindness spins out there into the universe and keeps helping people.
Tomorrow is my CT Scan. With Contrast. So I have to be up at 8am to start drinking this contrast stuff, gross. And I think they are doing iodine too, so its a double whammy. I didn't like the iodine last time either, it burns and makes you feel funny. But, that's what they gotta do to get the best images, so oh well. I just want to know that this cancer is GONE. I have already talked to Dr. Iuliano and he said I could stop by after my scan to get a preliminary read. Not the final "official" read, but at least a preliminary to see how it is going. I am confident that it will be better than the last scan. My symptoms are better, so that has to be a good sign!
If you are at the fair tonight, stop by and honor breast cancer survivors at the rodeo at 7pm. If you are a survivor - meet me at 6:30 outside the rodeo grounds and ride with me! Lets raise some money and inspire hope! Are you Tough Enough to Wear Pink??? I know I am!
Tuesday, August 25, 2009
But I'm still alive. And that is what I cling to. I'm still alive and it could be so much worse. I could be a lot sicker, a lot fatter and completely bald. But I have to admit it is frustrating when two months ago I was thin, exercising regularly, looking and feeling great, had a great haircut and amazing hair color and then... BAM!... I look like this and I am battling for my life! It can be frustrating, but I have to keep it in perspective, it could be so much worse. You all just keep reminding me when I forget! And, of course, this whole experience has had an extremely positive impact on my shoe collection. Let's look at the bright side, cancer+chemo=new shoes.
Its a down week, and I'm so exhausted I can't even explain how exhausted I am. My body feels like it is made of lead and it takes an incredible amount of effort just to do anything. When I wake up in the morning I have to lay there and just think for awhile about getting up because the concept of actually moving is so appalling to me, that I think, why? Why not just lay here for the rest of the day? I mean, really, does anyone really really need anything from me? Probably not. I mean when it comes down to it, I'm not like one of those "essential" Hanford employees or anything. No one would even notice if I stayed in bed all day. Well, except for my dog, she would love it. So I just lay still, contemplating this thought, and listen to the world awaken around me. Then I hear the birds chirping outside my window. I hear the sounds of the morning streaming through, and I think, well maybe, maybe just for today I could haul my butt out of this bed and go through the motions of the day. And, you know what? I might even find that there is something fabulous waiting for me on the other side of getting up. If I can just find the energy to move I would find out that incredible things await me during this day. There are riches to gain that are immeasurable, things beyond my wildest dreams to discover... Or, at the very least, there is still Ben & Jerry's in the freezer to have before bedtime tonight.
And sure enough, here I am. Sitting on my porch on a lovely summer morning. And yeah, I'm still fat, swollen, balding and tired... but I'm here. I have been given another day, another chance to change a life, to say a kind word, to smile at people around me. And they have been given the chance to smile at me. That is reason enough to rise in the morning.
And besides, Mike still thinks I'm beautiful. And that is good enough for me.
Sunday, August 23, 2009
Do you ever have those days when you want to just pull the covers over your head and just skip the day? Go back to sleep and dream the day away and try again tomorrow? I think we all have those, regardless of whether or not we have any sort of trials in our lives. I think its part of human nature, part of our chemical make up somehow, where there are those days, those moments when you just don't want to deal with life for awhile. Life isn't easy, it’s hard. It’s beautiful and wonderful and has so many incredible experiences to offer, but it isn't easy. Life will let you down, if you let it. The trick is to not let it.
We all have our expectations, our desires, how we want things to look and be for our life. I don't think that makes any of us control freaks; it’s just what we want and how we want it in our own lives. Problem is, the rest of the people in our world want things their way too, so mine isn't the only desire, the only viewpoint, the only dream in my life. Somehow we have to figure out how to mesh our dreams and our desires into those of the ones we love. And I think that sometimes they fit, and sometimes they don't. None of us sees the world the same way. Each one of us brings our own perspective into our reality. Our reality is ours. Mine is not the same as yours because I am seeing the world through my perspective, my preconceived notions, my hurts, my successes, my failures, my joys, my sorrows. I can look at the same flower and see it completely differently based on what my experience is, and none of us have the same experiences. So as we look at our futures, we see our future and our desires, and that may or may not fit in with the ones we love and the people we are spending that future with.
Can this be overcome? Of course, but it takes work. That's where the "life gets hard" part comes in. Because we are all so human we let each other down, all the time. That's just what we do. Unless our name is Jesus, we are certainly not perfect, and spend alot of time doing things wrong, mostly unintentionally, its just part of our human nature. So when we go along our bumpy road and we have our plans and our goals, they sometimes get shot out of existence, or at least it can feel that way. Maybe I am being obtuse here, but I think you all know what I mean. I think I can't say it any easier than this - we don't always get what we want. But I do believe that God and this life will give us what we need. (There's the makings of a song there...) We sometimes just need to get out of the way and let life takes its course and realize that we are all such flawed and incomplete human beings. There is always a combined perspective, a compromise, and joined vision that can be found if the desire is there to find it. I think we get stuck in our own dreams and forget that there is another dream that can coalesce with ours to make a better shared dream, a better future.
And sometimes, you just have to adjust what you desire and let it go. People will not be what you want them to be, they are going to be exactly who and what they are, and no one can change them. Change can only come from an internal desire. I certainly cannot tell you that you HAVE to change the way you look at something, see yourself, look at the world, how you feel, your perspective, your thoughts, your desires, your dreams, your goals; the filter that you see the world through is your filter. It is your reality and there is nothing I can do, or should do, to change that. Some of us feel compelled to share our opinions about what others should think, feel or do... but I don't know if that is always the best course of action. I think sometimes, we just have to leave it alone and let people live the life they are meant to live, without all the static from us. Words are limited and full of hidden meanings and emotions and they fail us, and when that happens I think we just have to see people through our heart, not our mind. Look at them through the heart of God within us and let them find their own way. That’s why God give us so much grace, because we need all the grace we can get not only from Him, but from each other. When was the last time you granted grace to someone?
So, I’m out of bed, and as much as the covers over the head looked good to me - life and this day, are waiting for me (and with very little hair I don’t have to worry about bed head). It might not be the day I want and my future may not be the one I was planning, but it is my day and it’s the only Sunday, August 23, 2009, that I’m going to get. I might as well take it for what it has to offer and seize the day, the old "carpe diem" quote. Or as quoted in one of my favorite movies Braveheart – Every man dies, not every man really lives. I certainly don’t want to leave this earth not living life to the fullest. It’s the only life I’m going to get, so I might as well face the sunshine, put a smile on my face knowing that eventually it will make its way to my heart and soul. Smiles, like grace, eventually find their way home. I’m feeling better already.
Saturday, August 22, 2009
Its a strange dynamic, when you think of it. Remember as a teenager and young adult how your female relationships were, strained with backstabbing and jealously. Somewhere, those qualities fall away as maturity takes over and the women around you coalesce into a gel that forms around you, comforting you and supporting you at the same time. This moving, living, breathing force that keeps you sane, keeps you moving forward, knowing that you are never alone, never without love, never without an ear to listen, a shoulder to cry on, a hand to hold, a cheer to share, a hug when needed. its the most amazing gift. Girlfriends. God, I love you.
The patio is beautiful today. Unfortunately the local brush fires have put the scent of fire in the air. I hope that they are able to get them all under control and no one gets hurt. This round of chemo has really made me sick to my stomach and I have been struggling with nausea for the last 12 hours or so. Mike and I went to the "Evening with the Angels" last night with Gary and Tina, which was a benefit for the Tri-Cities Chaplaincy and it was absolutely wonderful. Music, chocolate and wine. The music was beautiful. When they sang "How Could I Ever Know" from Secret Garden at the beginning of the second act, I couldn't hold back the tears. It is the most beautiful song that Lily sings to her husband after she dies and he is sitting in the Garden. I just took Mike's hand and let the tears fall, there was no stopping them.
How could I know I would have to leave you?
How could I know I would hurt you so?
You were the one I was born to love!
Oh, how could I ever know?
How could I ever know?
How can I say to go on without me?
How, when I know you still need me so?
How can I say not to dream about me?
How could I ever know?
Forgive me. Can you forgive me
And hold me in your heart,
And find some new way to love me
Now that we're apart?
How could I know I would never hold you?
Never again in this world, but oh,
Sure as you breathe, I am there inside you,
How could I ever know?
See what I mean? Then he sings back to her...
How can I hope to go on without you?
How can I know where you'd have me go?
How can I bear not to dream about you?
Oh, how can I let you go?
Reading that, how could I not cry? It was beautiful. They also did alot of fun stuff and even a song from Spamalot, which was a production that Mike and I so thoroughly enjoyed! it was a wonderful night and I'm glad I was well enough to attend.
Today I am going to walk the doggies this morning while its still cool and then the Tri-City Delinquents (Deana is out of town) are having lunch and pedicures this afternoon. It will be a restful day as I just get my strength back from this dose and bring my counts back to where they need to be. Rest...rest...rest... I hate it, but its true, that's what my body needs.
Mike and I were looking at my schedule last night and we realized that my CT should be this week, and I see Dr. Rado the week after that for follow up. So, I'll be getting my CT sometime later this week. And you all know me, I won't be waiting patiently to see my doctor the following week with the results, I'll be straight over to Iuliano's office to see how it is going. Pray for good outcome!
Have a wonderful, marvelous, glorious, peaceful and love-filled day. Enjoy every moment, there's never a moment to waste!
Friday, August 21, 2009
So, I got dose 2 of round 3 and am feeling okay. Tired and a little sick to my stomach, but mostly tired. I just want to sit around and do nothing, read, watch TV, email. Its sort of a butt numbing existence. I had PT yesterday and she really wants me to start to exercise, walking, everyday for at least 10-30 minutes. No matter how tired I am. So I still have a gym membership and I'm going to try to commit to hit the gym to walk on the treadmill for 10-30 minutes a day. I can do that. She thinks that by exercising it will help to combat the fatigue. I'm all for that. I have been wasting all that money on the gym, might as well use it. And maybe it will keep my butt from getting wider than it already is, that is a good thing too. Between the steroids and the lack of exercise, I'm getting a little round.
So I'm home for the next few days, resting and recovering and back to the grind on Monday. I have a busy week next week, especially with the rodeo and working on the Tough Enough to Wear Pink Night. I'm coordinating the survivors for the trolley that opens up the rodeo that night and I have to admit I got a late start on it and am hoping to get a good turnout. I've ask for a few radio spots and an ad in the paper, so look for information about the survivors at Tough Enough to Wear Pink. If you know a breast cancer survivor that wants to participate, please get them in touch with me!! They get free tickets to the fair!
The patio is a bit breezy this morning, so I'm not sure how long I'll tough it out. Everything is being blown around and the wind is cool on my head. I think I might have to wear a hat if I'm going to stay out here! The wind might blow away some of that heat, and that would be good! I certainly don't handle the heat well.
Love to you all, keep praying. Next week is rebound week and then I get my CT with good news!!
Thursday, August 20, 2009
The birds are singing, the air is warm, the fountain is, well, founting. As much as I was sad to leave yesterday, its always good to be home. The animals definitely missed us and Kyra slept right up against me all night, probably to make sure I didn't leave again! Betsy (new kitty) drove Houston nuts while we were gone and is glad to have her Sophie (new puppy) back to play with and her family here to terrorize! Sophie was so happy to see Peyton and when they went upstairs at bedtime, she went straight to her crate to go to sleep. She is glad to have her home back too! I am sure grateful for those people (Houston, Alyssa and Joey) who took care of my precious animals while I was gone, it makes it hard to leave sometimes when you have pets, but if you know they are in good care, its makes it much easier.
The ride home was long but uneventful. We stopped briefly at the factory outlets in Lincoln City, but didn't stay long, which I know is a travesty to not take the time to shop, but we had Mike and Gpa with us, neither of which are shoppers. Not to mention, I really didn't have the cash to spend. I did get Peyton a pair of jeans at Hollister for school and she bought herself some shirts and stuff. Gma and I hit the Coach outlet and the prices were so great that she just couldn't resist and she got me and Peyton the CUTEST pink coach purses! OMG! So, I was pretty excited about that. So today for chemo, I'll wear my new purple Charles David shoes from Nordstroms and my take my new pink Coach purse. I'll be totally styling! A real Coach purse, not the imitation! I am so excited!
Today, God willing, is chemo day. I am feeling pretty good, so I am confident that my counts have adequately rebounded and I can stay on track. I'll have this dose today, then next week is my down week where I just feel crappy and try to recover, and the week after I'll have another CT to see how well the chemo is working. That week "off" is sort of a quandary for me. I'm not taking chemo but the chemo is working mightily in my system and I'm sicker that week than I am the two weeks before. I don't know if I've explained the "nadir" before, but that is the high point of chemo, the point where it peaks in your system and the affects are the worst. The chemo I'm on has a 7-10 day nadir. So 7-10 days after the dose is when I have the high point of the effects, so 7-10 days after my second dose, the chemo is rockin and rollin and my blood counts are at their worst. Funny, eh? You'd think you'd feel better on your week off, but no such luck.
I understand that it is heating up in the Tri-cities, so I do not think I will be embarking on any outside activities today once I leave my deck this morning. I heard that there are a few beautiful bouquets of flowers at my office that I need to pick up, so I'll probably stop by there this afternoon. Peyton has her final follow up with Dr. Schwartz on her tonsils, so I'll have her come with me to 1) help carry flowers and 2) keep me from working! Anything I need done, I can do from home, so I'll work from home today and a little tomorrow. The email is pretty overwhelming right now after ignoring it at the coast.
It was so hard to say goodbye to my family, and I promised I wouldn't cry, but Rhonda and I couldn't help it. We are wimps when it comes to goodbyes and the tears just flowed. I know I'll see them all again, but the time was so short and passed so quickly, it just broke my heart to say goodbye. I said this before, but when I am with them, I realize how much I miss them.
Enjoy the summertime, the heat is back, but fall is just around the corner.
Hugs, love, joy, peace and love.
Wednesday, August 19, 2009
Speaking of time, the time has come to pack up and leave. I think Jason flies first at 2pm, so they have to be on the road by about 8am and it just breaks my heart that the time together is almost over. I found myself unable to stop crying this morning at the thought of it. Time moves so swiftly, too swiftly, and there is never enough of it. Just when you think that you have this perfect time, this perfect moment, its slips away from your grasp and you cannot get it back. So I try to capture it in my mind, look at that moment and hold on to what it special about it, those intangibles that I can never get back; the glance, the eyes, the laugh, the intonation of the voice, the feel of the skin, the weight of the hug. These are the things that I will carry in my heart with me. These are the things that will carry me through the next few months of treatment until we can all be together again. My brother's 50th is coming up in the spring along with Peyton's 18th and her graduation, so I know that there are many opportunities for us to be together again. I wish my son and his family were here more than I can say, it just doesn't feel complete without them, so I hope next time, its is truly ALL of us.
Mike and I went out last night and watched the stars. The stars out here are amazing. They are countless and so intense away from the lights of civilization. We saw numerous shooting stars and just the thought of laying in Mike's arms in the cold night air watching the stars warms my heart. I could have laid there for hours, talking with the love of my life, looking into the vast expanse of the universe, wondering if it could get any more perfect. Another perfect moment, captured in my mind, engraved in my heart and soul, a time I'll never loose.
So this chapter is ready to close. The house is waking up, showers are being taken, packing is being done, the coffee is brewed. We will finish the trip with some family pictures, sans Houston's family, but family pictures nonetheless. I have tried to reign in the tears, since I want these moments to be happy, not sad, but not sure if I can say goodbye without falling apart. The more time I spend with my brother and his family the more I realize how much I enjoy their company and their humor and wish we all lived closer together. But wishes are like the wind, you throw them out there and they spin out to be considered by the universe. Maybe someday, we'll all move to the coast.
Love you all. Pray for safe travels.
Tuesday, August 18, 2009
I was exhausted all day yesterday, and ended up sleeping alot. I am feeling much better today and am hoping to be able to spend alot more time with the family. We are going to head south today, to Haceta Head Lighthouse and Devil's Churn and pack a picnic lunch. If the weather holds, we are going to do a bonfire on the beach later and maybe make hot dogs and smores! I woke the girls up already to give them plenty of time to get ready, I have no idea why they would have to beautify before heading out to the beach, but hey, they are 17. Go figure.
It has gone quickly, this trip to the beach. Its hard to believe that we have to leave tomorrow already. I could just stay here forever. Everytime I come to the Oregon Coast it renews my dream to live here with Mike someday. I would be perfectly content to buy a little tiny house as long as its on the beach and spend the rest of my days enjoying the surf. Just watching those waves come in and out, the surf spray, the birds flying on the trade winds. To me, this is the most perfect place in the world.
Monday, August 17, 2009
The house has an incredible view, and as I sit and write this, I'm in a leather recliner watching the sun set over the ocean. The sounds of dinner being made are behind me in the kitchen, the kids are downstairs playing pool. It is a perfect evening. I've been incredibly tired today, which is to be expected, but was able to enjoy a walk on the beach this morning and then another walk at Seal Rock State Park this afternoon with my family. I took a nap but was able to make it up in time for cocktail hour and fresh salsa on the deck. We are hoping that tomorrow the wind will subside a bit so we can enjoy the beach and have a bonfire tomorrow night. We have all the makings for smores, but tonight would be a little too windy to enjoy.
Its a heck of a way to relax and recover. There is no bad day at the beach.
Saturday, August 15, 2009
Leaving for the coast tomorrow!! I can't wait. My brother, wife and kids will be flying into Portland about 4ish and will meet us there at Seal Rock, south of Newport Beach. Busy day today getting ready, lots of cooking, laundry and packing. My hair is falling out at a fairly fast rate, so I'm having Reynel do another cut today. I'm going very very short, and if the bald spots are too bad, then I'll just shave the darn hair. Who cares about hair anyway, it is terribly overrated! Bald is the new beautiful. I have to admit that I am sad because a big section of my family isn't going to be able to make it to the coast. Elena, Houston and Jessie all are staying home. Elena couldn't get off work at the bank and Houston just got a job (yea!) and of course can't leave right after he starts work. I debated taking Jessie with me, but know that I simply don't have the strength to take care of a two year old for four days. If one of his parents were going to be there, it would have been great, but without them it would be nana nana nana nana nana... I love that word, but I think my energy level isn't there. So, I am sad that its not my whole family. But circumstances just change. They will stay behind and take care of the cats and the house, but I'd rather they be with me! But we don't always get what we want in life, do we?
Life is funny that way. I was talking to my PT, Sara, about that yesterday. Is life fair? Do we get exactly what we are supposed to get in this life? I would like to say that life isn't fair, I mean, what did I do to deserve another round with this horrible disease, but maybe Sara is right and it is exactly what I am supposed to be doing. Maybe fair is a relative term, maybe we are all living the lives we are supposed to be living. I may want more for someone in my life, better, but maybe they are exactly where they are supposed to be? The bum on the street or the CEO of a major corporation, each person doing exactly what they are supposed to be doing in this life. And it all goes to the glory of our creator anyway. Maybe this cancer and this trial is simply the course my life is supposed to take. I always said that the cancer is a blessing and a curse. Cancer is a great teacher. Each experience is a great teacher if you let it be. Maybe sometimes we need to move out of the way of others and let them experience their life, be it pleasure or pain, so that they can live their life exactly the way that they are supposed to. Quit putting our opinions on what WE think they should do and let them makes those decisions for themselves. Who is to say what course anyones life is supposed to take. Only God knows, and I don't think He puts us in the middle of this mess for nothing, there is alot we are supposed to do and learn. So think about that, let me know what you think. Is life fair? Do we just walk the road we are meant to walk and learn our lessons along the way?
I wonder what happens when we are gone? I think about that alot, and wonder, what happens if I leave before I'm ready. I don't think I really have a choice when my time is up, I just know I'm not ready to go now. I am not afraid to leave this earth, I think there is a beautiful and wonderful place in eternity for us. But I am afraid of who I leave behind and the pain that it would cause. I wonder what else I need to teach my daughter to prepare her for this world. She is only 17 and still has alot left to learn. I have found that this cancer it is forcing her to grow up in ways that she wouldn't have had to before. I don't know if I like that, but like I said, maybe life IS fair and this is the course her life was supposed to take anyway. Maybe it is her time to grow and learn these lessons. I wonder if I leave before I am ready to let go, do I cross over or do I stay here and get to watch over her until she is ready for me to go? I would like to think I would get to stay here in spirit and be a presence in her life for as long as she needs me, but only God has the answer to that question. I am setting goals for myself and my goal is to still be here in a year when I'll get to see her turn 18 and graduate, and I plan on making that goal!
My other goals are small; make it to the coast to rest and relax with my family; make it through another dose of chemo next week, make it to my next CT scan at the end of the month and have it show improvement. Continue to minimize my work schedule and take care of my health so I can meet my goals!!
There is so much to think about as we go through this life, so much beauty and so much pain and so many questions of how to walk this road. I know that I need to learn to let go of troubles and worry and let my energy focus on the good and the healing. Let go of the stuff I cannot and should not control or change, and focus my light on the positive things in the world. Fill myself up from God's universal life force and give that energy to others from my abundance, not from my reserve. God has unlimited positive energy for me to take, I need to fill myself with that life force, that white energy and then share that overflowing love of God with others. Then my reserves will never deplete and I am truly sharing His love mixed with mine. Sounds easy, now I just have to work on doing it.
Its Saturday after chemo, and I'm planning on a great day. I am hoping all those steroids will kick in and I'll feel fabulous like I did two weeks ago. This round has left me feeling pretty weak, so maybe it won't be as great as two weeks ago, but as long as I feel OK, I'll take it!
Say prayers for a safe trip!
Thursday, August 13, 2009
I've been pretty tired today and feeling pretty wrung out. I can tell that my counts are down, that I'm anemic and my legs feel like lead. I just have no energy. It really stinks. But, I am determined to get through this with a smile on my face and awesome shoes on my feet. The steroids have made me all puffy and fat, and I remember all that weight I lost prior to the cancer... well its back. I am back in the clothes that didn't fit a month ago because they were too big, and I have to admit that sort of gets me down. I don't know how much of the weight is due to the steroids and how much is due to the sedentary lifestyle. I can't say I'm getting much exercise these days. But, when this is all said and done, and I get off the steroids and my weight just drops then I'll feel like a million bucks! Something to look forward to!
We are getting ready for our trip to the coast, I can't wait! My bro and his family are flying into Portland on Sunday and will meet us at the house we rented in Seal Rock, which is just south of Newport Beach. I am checking to see where the closest hospital is, just in case. Since I am going into this round with my platelets so low, and low platelets can cause bleeding, its something I'm really going to have to watch. But I'm going to have my whole family there to baby me and watch out for me, so I doubt I'll be in harms way. My nurse said today, just don't fall down! So, no klutziness! Mom and I are preparing the menus and going shopping tomorrow. Its almost here!
I was thinking this morning and wanted to mention how much I love my dog, Kyra. She is so sweet and loving and in tune with me. She goes to bed before me and heats up my spot and as soon as I come to bed she moves over so she is just next to my legs, right near me when she is almost touching, but not quite. She just knows I'm there. Then as soon as I wake in the morning, even if I haven't moved yet, she knows I am awake and crawls up to get her ears scratched and a little attention to start her day. She takes care of me and when I'm feeling bad she never leaves my side when I'm sick. Its pretty cool. I aspire to be as great as my dog thinks I am and I think we could all learn alot from dogs. They are loyal and true and always happy to see you, no matter what. Kyra is a true a loyal girl. I am so happy Peyton found her at Pet Over Population all those years ago and talked me into getting her. I have never regretted it. She has become my dog, my companion over all these years together.
Well, all for now. I think that's what I will work on, being as awesome as Kyra thinks I am! I'm anticipating feeling pretty rotten tonight, hoping I get that spark of energy this weekend! Love to all of you, keep those prayers going! I need every one I can get right now!
Wednesday, August 12, 2009
Peyton had a really tough time at the dentist on Tuesday so at 2pm while at the SF airport ready to board the plane, she called me in a total meltdown. It was awful not to be there to help her through and to hold her hand. I'll never let her go to the dentist again by herself. Thanks to Willamette Dental she is so traumatized by the Dentist she can't handle it yet. I am not a Willamette fan, not at all. They are terrible dentists. So I have her going to a pediatric dentist and the first trip went well, but apparently if I wasn't sitting right there supervising, they weren't quite a gentle or sensitive. They will be hearing from me. She has terrible anxiety, they knew it, and put a Novocaine shot right in front of her eyes, didn't even hide it from her. Not cool. And without me there to talk her down, it just didn't go well. Mommy ain't happy, so they are not going to be happy when they talk to me!!
The final day of the conference was excellent. They ended with a humorist who was hilarious. I was so glad that I stayed for the final speaker and didn't try to leave early. It allowed me to leave on such a high note. We hit the Giardhelli Chocolaete store on our way out of town and got some really yummy chocolate! It was great. Perfect gifts.
I pushed the whole trip hard and did everything I wanted to do, and don't regret one moment. I knew coming home that my counts had not rebounded like I would have liked them to and sure enough, at the Doctor this morning my platelets have only come up from 43 to 95, where they need to be 100 to do the chemo. Since it is only 5 points low, they are going to let me go ahead and get my chemo tomorrow. I am still down on my reds which means I'm anemic and my white count is border line. So I'm going into this chemo with the worst counts so far, so its going to be pretty tough this round. Mike is going to be giving me nupogen shots over the weekend and I have an order for labwork in case my counts totally drop at the coast. I know my counts well enough that they won't be allowed to do anything withou the input of the primary care cancer physicians. They know the treatment and plan, a doctor out of the ED at the Oregon cost simply can't know the plan. I am hoping I can advoid a platelet transfusion, say your prayers.
After this dose, I'm off to the Coast on Sunday. I can't wait. My son got a job at Pizza Hut (Yea) so he may not be able to go. Elena cannot get the time off work, and with the chemo being so hard on me, I probably won't take Jessie. I think it will be too much for me to handle a two year old on my own for 4 days. I think I'm goin to be too tired and too sick to be able to do it. It makes me sad because he would be so much fun at the coast, but I have to watch out for my own heath.
Got a ton of work done today, but there is so much more to do! I got alot done but will probably go in for a few on Friday to go over the deails of everything next week with Wendy. There is alot of meetings!!
More tomorrow. I'm exchausted and need to go to beddy bye. God Blesss!
Monday, August 10, 2009
Sunday, August 9, 2009
The conference was really great today. One of the speakers is on Obama's healthcare reform team and was an incredible speaker, so we really enjoyed her. I was starting to fade pretty hard at the end of the day so I got about a 30 minute power nap in my room before the Chinatown walking tour. And I am so glad I decided to do the tour. Our guide was so knowledgeable about Chinatown and the Chinese culture and customs. Of course, she was born and raised in Chinatown, which I am sure helped! We got to go to a Buddhist Temple which was very cool. I got a picture with the golden Buddha and got to throw the ying/yang question stones. It was a calm and peaceful place. I felt very blessed that they allowed us to enter into their holy place and was very grateful and respectful of their generosity.
then we went to a fortune cookie factory, and they are so incredibly yummy hot off the press!! I got to get the first fortune and it was "you will have great riches this month" which I take to mean a great CT scan. My riches are not monetary, so great health to me is a great richness!! I picked my son up a fresh bag of fortune cookies since he really likes them. I learned that in China they have no idea what a fortune cookie is, it is an American phenomenon. We westerners love them, so they keep making them for us. We stopped by a Chinese herbalist and learned a little about how the Chinese herbal medicine works, which I find fascinating. I am not afraid to try it, and would love to go to an herbalist and see what they would recommend to help fight this cancer.
Then we went to a traditional Chinese tea shop and tried all sorts of different teas. It was very cool and we learned alot of about tea and its purpose. Most Chinese drink tea for the benefits, not for the flavor. That was the last stop on the tour and I staid and spoke at length with this nice young Chinese man about tea and ended up getting "Angel Tea" which is 4 day old green tea and is the tea to use every day during cancer treatment to cleanse the body and fight the disease. After I beat the cancer, I switch to Blue Tea to keep it away forever. So, hey, I'm willing to try it. For $30 I got a months supply of this tea, which really has a strong flavor, and I am going to drink it 4-5 times per day for the next 30 days. I have my CT in about a month, so this certainly can't hurt. I got a little tea pot to make the tea which is really cool and I can reuse my tea about 5 times before a throw it out. So I would use 1 teaspoon per day to make 4-5 cups. Very cool. Hey it can't hurt and it might help, so why not try it?!
Sharon and I just wandered around the shops and then had a light dinner and glass of wine here at the hotel when we got back and I thoroughly enjoyed my time with her. I am so glad that we found each other at this conference and are getting to know each other better. The relationship just feels so right, like we were meant to spend this time together. I have made another new friend, and what a gift that is. You can never have too many friends and we just have so much to offer each other. Its exciting when you connect with a new person. Expanding that friendship circle is so important and so rewarding. You can never have too many friends!!
Well, its off to bed. I have an early day tomorrow so I won't be able to blog in the morning. I read some great sayings in China Town, there were banners with quotes everywhere. But Mother Theresa rung so true to me. "We cannot do great things on this earth, only small things with great love." So flood the world with great love in all the little things that we do and big things will happen as a result. Great Love is the key to all things. Be Kind to everyone you meet, and share love. What else is there?
Friday, August 7, 2009
I head out early and get there early and have requested an early check in at the hotel. I am doing a tour of Alcatraz at 12:30, so I would like to get some rest prior to that trip. But if I can't, that's okay, I'll just sort of find a place to sit in the lobby and just rest there. I have a dinner tomorrow night and the conference starts on Sunday. Even if I feel crappy on Saturday, I should start rebounding by Sunday-Monday, so I'm going no matter what! Say your prayers that I have energy! Of course, there is no doubt I'm going to enjoy the trip. I have been looking forward to this trip since last year when we were in San Diego. Not only is it a great conference, I have great friends that go every year and I am looking forward to seeing them.
Crazy weather today, eh? I was going to sit on the patio but it is raining. That is awesome, actually. I love the rain. I love the way it makes everything smell and the way it freshens the world up. Not to mention, my garden is loving it! So, rain on, bring us some refreshment and some reprieve from the heat. This is perfect summer weather too.
I'll be blogging from the road, love you all!!
Wednesday, August 5, 2009
Tuesday, August 4, 2009
I have to admit I have had a rough 24 hours. For some reason the steroids are making me swell and I look like I've had dental surgery. It is sort of amusing to see people's faces when they walk in my office and see me and are not sure what to say. "A little swollen" seems to be the statement I get the most. I get it. I look funny. Its okay. Laugh with me. This too shall pass. This is the price I pay to not get the 1:100,000 rash, so I guess I'll take a little swollen jaw over a hideous rash! I have also developed some fairly severe joint pain, which made for a very long night. They are going to try me on some celebrex prophylacticly to mitigate the pain before it happens tonight, so hopefully have a more restful night. I have to start early tomorrow with a Board meeting, with fabulous shoes, so I'll try to sleep early and stay asleep! Say your prayers!
In the meantime Mitra is running some labwork to determine if my counts have dropped and see what we can do to make sure I get to go to San Francisco this weekend. I swear I've had every unusual reaction that is possible to have with my chemo, so who knows what will happen next. I'll just hold on to my hat and let you know. Off to get ready for bed, I just KNOW its going to be a great sleeping night. Nighty night. zzzzzzzzzzzzzzzzzzzzzzzzzzzzz
Sunday, August 2, 2009
Saturday, August 1, 2009
I hit my patio early on Saturday morning, ready to enjoy the freedom and fresh morning air and what a treat I was in for my day! My children, both awake early for their own reasons (miracle upon miracle) came and joined me. So I got to spend the morning in my favorite place in the world, with my two awesome kids visiting me, talking about life, the day, the pets. Just enjoying each other's company. It was the perfect morning. Made even more perfect by a stop by from Angela Ball with a few Starbucks! Thanks Angela! You helped make a perfect day even more perfect.
Yesterday was a perfect day. It was perfect because I forgot I had cancer and just had a day of normalcy. I felt great. I worked outside for a little while and I realize how much I miss tending my garden and my flowers. Something about watching them grow, weeding, pruning, its all so cathartic. I walked the dogs with mom, dad, Mike, Eleana, Houston and Jessie, and what a joy that was watching the animals run around, the puppy acting like a "big dog" and Jessie chasing them all everywhere. He let his Nana help him down to the river and carry him around for awhile, his dirty little hand prints all up and down my shirt and dirty shoes on my legs. It was fabulous. After the walk I went and bought groceries. Now that might not sound fun to any of you, but it was amazing. Here I was, doing stuff I normally do, without a care in the world. I bought healthy stuff, but more than my share of Little Debbies and chips and all sorts of comfort food. Then it was off to my kitchen for the afternoon where I whipped up some of my killer blueberry coffee cake (which I just had for breakfast, oh yeah, its good) and dinner for my family. Chicken Penne Pasta with Creamy Pesto Sauce, pine nuts and sun dried tomatoes, fresh summer squash, fresh salad and sundaes for dessert. Wow. It was a wonderful dinner, set on a perfect summer table with my family around me. It was such an average day but absolutely perfect in my eyes and in my world.
Peyton, Mike and I kicked back to watch a movie The Haunting in Connecticut which was scary, but not too bad, and then Peyton and I watched Sex in the City for some lightheartedness before going to bed.
While you read this you might be thinking, so what? This is a day that everyone has, buy groceries, cook dinner, go for a walk... but think about it if you couldn't do it? How much would you miss being able to have just that regular things in your life? I realize that is what I miss, the normal stuff. The average stuff, the having the energy and desire to cook dinner or buy groceries. Having the energy to spend time with my family. The love that binds us is set in time. We need that time together to refresh and renew and remind ourselves why we we are a family who loves each other. And I am very lucky, because I have a really awesome and loving family. We really like each other and enjoy our time together. I am so blessed.
I am hoping for another normal day. As I sit here on the patio I don't have the energy I had yesterday, but no less desire to go and have my day my way. Angela Ball is my saint and hero this week and is bringing dinner tonight, so I am looking forward to comfort food this evening, chicken, mashed potatoes and gravy, rolls.... your good ol' comfort Sunday dinner. So I will focus my energies on doing those things that made me happy, spending time with my family and my life's love, Mike.
So as you go throughout your day, think of those normal things that you would miss so much if you couldn't do it. So many times we bemoan our daily chores, but really, imagine your day without them? Would you miss being able to do those simple things that take care of your life and your family? I think you'd be surprised to find that its it the most simple things in the world that make the biggest difference in your life. Enjoy every single moment, each one is a precious gift. Love and light to all of you my friends.