We are at the San Diego airport. I have to admit it has been a difficult few days. I am completely exhausted and am ready to be home and sleep in my own bed and not drive in the crazy California traffic with my daughter using my cell phone’s GPS to get us everyplace we need to go. It's frustrating to not have the cognitive abilities I used to have and I know that my daughter got frustrated with me because we would take the same route every day, but every day I wouldn’t remember the route and would need GPS to find the same route that we used the day before or earlier in the day. What she doesn’t realize is this was even more frustrating for me. I used to rent a car in a city that I have never been before and within 24 hours I would have my bearings and would be driving around, easily getting myself from point a to point b without any problems This trip I never did get my bearings. Every drive was nerve racking; feeling unsure of my abilities with a total lack of confidence regarding not only my driving skills, but my ability to stay focused on the driving with the traffic whizzing by me on both sides, exits coming up quickly. It was not only grueling emotionally but also wore me out physically. But it is done, thank God, and I’m heading home. We made it through.
Bobbi Jo is heading down hill fast. She took a serious turn for the worse on Thursday morning, the day we got here, and has completely lost the ability to use her left side at all and her speech is extremely hard to understand, although she tries very hard to communicate. I know it is so difficult for her to know what she wants to communicate but unable to get the words out in a way that her friends and family can understand. But we were able to communicate enough for me to know that she knew I was there, she knew Peyton, Jeannie (mom) and Red (dad), she was extremely glad to see us and very grateful that we had come. The ceremony that they did at her house today was amazing. It was officially Bobbi Jo McManus Day in San Diego as designated by the City Council. None of us really knew now much she had done for the city and all the task forces she volunteered for and all the things she did to improve the community she lived in. I was certainly proud to be her niece. It made me realize how much impact our actions make on the people around us and how much we can do, if we just take the time, to improve the world around us. Bobbi Jo leaves this world a better place than it was when she came into it, and that is a legacy that we should all strive for as we live our lives. Pay it forward and leave a world behind that is better that it was when we entered it. My aunt inspires me.
It was hard to leave knowing that it is probably the last time I will see her alive. They did determine that she definitely had a stroke which has significantly impacted her left side and she has a DNR in place and is very clear about her wishes. She wants no heroic measures, she doesn’t want to be a burden on her family, she wants to die with some dignity. And isn’t that what we all want too? I know I do, I understand, I worry so much about becoming a burden on my family, on my children, on Mike and my parents. I want to slip away peacefully without dragging the whole family down with me. That is definitely my prayer.
So I head home knowing I have done all I can do. I have told her how much I love her and how proud I am of her. I have told her how much I enjoyed having her as part of my life and that I hope I can leave this world making as big of an impact as she has made.
I am looking forward to the fundraiser tomorrow, but am looking forward more to sleeping in my own bed, and sleeping as late as I want, hopefully getting some energy back before tomorrow at 3pm. I would have updated my blog sooner, but there was no Wi-Fi at the hotel so I had to wait until I got to the airport to blog! Crazy, eh?!
Say prayers for my aunt and for her family, for my mom’s heart, for strength. We could all use a little extra strength these days.
Saturday, July 31, 2010
Wednesday, July 28, 2010
Its a Beautiful Day!
Ah, what a beautiful day on the patio. It’s cool and every once in a while a breeze waifs through and cools off my almost bald head. It’s crazy how hot my head can get with no hair! Durashine wanted to clean today at 8am, which is fine with me, the house was in serious need of a cleaning, so I just make myself scarce in the backyard for an hour and my daughter just stays sleeping in her room, which she doesn’t mind at all, and the house gets cleaned, thanks to the generosity of a lot of people who donated money to keep my house clean this summer. Thank you. I don’t know how I would have done it myself. I was looking at my kitchen floor last night through my incredibly exhausted eyes and thought to myself, thank you Lord, I don’t have to mop. Tomorrow, someone else will clean it. And, then I went to bed.
The exhaustion is getting me more than anything. I do okay in the morning and then by the afternoon I am just wiped out, especially if I get outside in the heat at all during the day. Yesterday Peyton and I went on a few errands and those little trips in and out of the car in the heat just zaps me of any energy. So we came home and I slept on the couch for the next few hours trying to regain my strength. I never did. I found the energy to water the flowers on the patio and then was in bed by 9pm. I am certainly not the night owl I used to be. I guess I got over that not wanting to sleep thing…I am sleeping just fine these days. Maybe it’s the chemo exhaustion; but I tend to think its God comforting my heart assuring me that I will wake up tomorrow, the day will be there, waiting for me, in all its glory and beauty. And every day that I am still here is an exquisite day to be alive.
We are looking forward to our trip tomorrow. We leave quite early, 5:25am and are in San Diego by mid-morning. I’m calling the hotel to see if we can get an early check-in and if not, that’s okay; we can go to my aunts for a few hours before checking into the hotel. She is really happy we are coming and I am sure is putting on the “healthiest” face she can for our visit. I know the drill, and I understand, when one is sick like this you do all you can to try not to worry the ones you love. They see through it anyway and pretend too that you are doing okay. It’s a dance borne out of love and the need to comfort each other in this dark and scary time. But underneath it all, we know the truth, the cancer is there, lurking with its ugly darkness, waiting for its chance to strike the final blow, or in my Aunts case, perhaps contribute to the final blow. They are less worried about the cancer right now than the fluid that continues to build up in her chest cavity and I don’t know yet if they have the blood clots under control. So there are many other things contributing to her health decline, conspiring against her. But we don’t know God’s plan and we don’t profess to understand the resilience of the human body. I know many a patient who wasn’t supposed to make it out of the hospital alive and lived another year. So, although we think this may be our last time seeing Bobbi Jo, only God knows. We may be planning another trip to San Diego in the spring to take her to the zoo…you just never know what the future holds. But we take the opportunity now to love each other and share and be together, because none of us knows what the future holds; any of us could be gone tomorrow.
Like I said, we will be back late Saturday night for the fundraiser on Sunday, which I am so excited for! I can’t wait to see everyone and visit and share what is going on their lives. I feel so disconnected these days. I have been so sick and exhausted that I have not been staying in contact very well and since I don’t go to work I don’t hear the skinny on what’s up with my friends at the hospital. So, if you are going Sunday, be ready to update me on what’s going on!
I persevere through each day. One step at a time, one foot in front of the other. That’s the best that I can do. I battle through the exhaustion and I know that my daughter is probably so tired of seeing me sick that she is ready to move out! But she is patient and kind with me, knowing that this too shall pass, and that we have a trip looming there on the horizon that will be incredible. I am so grateful that they decided not to give me chemo until I get back, I want this trip to be all it can be for me and my daughter, and I want to feel good during the trip. So my plan is to get through this week’s exhaustion. The nadir of this chemo is 7-10 days, so I should start feeling good early next week. That gives me a week to get ready for the Bahamas. I want to try to walk everyday, working on my stamina and improving my lung capacity. We will be snorkeling while we are there and I am concerned about my ability to hold my breath long enough to actually swim with the dolphins! This is a once in a lifetime chance, I don’t want to blow it!
I’ll keep in touch during my trip to San Diego and let you know how it goes. Hopefully I’ll be seeing lots on you on Sunday at 3pm at Ava Wine Bar on 395. Its gonna be a great party, you don’t want to miss it!
The exhaustion is getting me more than anything. I do okay in the morning and then by the afternoon I am just wiped out, especially if I get outside in the heat at all during the day. Yesterday Peyton and I went on a few errands and those little trips in and out of the car in the heat just zaps me of any energy. So we came home and I slept on the couch for the next few hours trying to regain my strength. I never did. I found the energy to water the flowers on the patio and then was in bed by 9pm. I am certainly not the night owl I used to be. I guess I got over that not wanting to sleep thing…I am sleeping just fine these days. Maybe it’s the chemo exhaustion; but I tend to think its God comforting my heart assuring me that I will wake up tomorrow, the day will be there, waiting for me, in all its glory and beauty. And every day that I am still here is an exquisite day to be alive.
We are looking forward to our trip tomorrow. We leave quite early, 5:25am and are in San Diego by mid-morning. I’m calling the hotel to see if we can get an early check-in and if not, that’s okay; we can go to my aunts for a few hours before checking into the hotel. She is really happy we are coming and I am sure is putting on the “healthiest” face she can for our visit. I know the drill, and I understand, when one is sick like this you do all you can to try not to worry the ones you love. They see through it anyway and pretend too that you are doing okay. It’s a dance borne out of love and the need to comfort each other in this dark and scary time. But underneath it all, we know the truth, the cancer is there, lurking with its ugly darkness, waiting for its chance to strike the final blow, or in my Aunts case, perhaps contribute to the final blow. They are less worried about the cancer right now than the fluid that continues to build up in her chest cavity and I don’t know yet if they have the blood clots under control. So there are many other things contributing to her health decline, conspiring against her. But we don’t know God’s plan and we don’t profess to understand the resilience of the human body. I know many a patient who wasn’t supposed to make it out of the hospital alive and lived another year. So, although we think this may be our last time seeing Bobbi Jo, only God knows. We may be planning another trip to San Diego in the spring to take her to the zoo…you just never know what the future holds. But we take the opportunity now to love each other and share and be together, because none of us knows what the future holds; any of us could be gone tomorrow.
Like I said, we will be back late Saturday night for the fundraiser on Sunday, which I am so excited for! I can’t wait to see everyone and visit and share what is going on their lives. I feel so disconnected these days. I have been so sick and exhausted that I have not been staying in contact very well and since I don’t go to work I don’t hear the skinny on what’s up with my friends at the hospital. So, if you are going Sunday, be ready to update me on what’s going on!
I persevere through each day. One step at a time, one foot in front of the other. That’s the best that I can do. I battle through the exhaustion and I know that my daughter is probably so tired of seeing me sick that she is ready to move out! But she is patient and kind with me, knowing that this too shall pass, and that we have a trip looming there on the horizon that will be incredible. I am so grateful that they decided not to give me chemo until I get back, I want this trip to be all it can be for me and my daughter, and I want to feel good during the trip. So my plan is to get through this week’s exhaustion. The nadir of this chemo is 7-10 days, so I should start feeling good early next week. That gives me a week to get ready for the Bahamas. I want to try to walk everyday, working on my stamina and improving my lung capacity. We will be snorkeling while we are there and I am concerned about my ability to hold my breath long enough to actually swim with the dolphins! This is a once in a lifetime chance, I don’t want to blow it!
I’ll keep in touch during my trip to San Diego and let you know how it goes. Hopefully I’ll be seeing lots on you on Sunday at 3pm at Ava Wine Bar on 395. Its gonna be a great party, you don’t want to miss it!
Tuesday, July 27, 2010
Its All About Love
As I sit here on a perfect cloudy cool morning in my most beautiful back yard I have awesome news to share! Dr. Iuliano called me shortly after my brain scan yesterday to let me know that there are no new metastases and the tumors that are there are shrinking. So, the treatment is working! I am so relieved and excited. I know that the doctors were fairly certain that nothing could survive the whole brain radiation; but it’s nice to have some confirmation of that knowledge. So, as far as we can see, I have some dead tumors shrinking in my brain. I see Dr. Zhang (neurologist) next week and we will discuss any long term damage that might have resulted from the tumors. I still have significant weakness and a tremor on my right side; will that always be there or can I hope for it to go away? What happens to the space left from the tumors? Do the tumors just stay there as dead tissue or does it slough off eventually, then what happens to the space left behind? Does it “refill” with brain tissue or is there always a space there where the tumor used to be? Weird to think of, huh? I think of my brain and I wonder…what happens next?
I had a mammogram too, but I have no reason to think that anything would be abnormal but will be picking up the results from that today anyway, just to be sure. With my history of this cancer, I wouldn’t be surprised to have it pop up anywhere, even back where it started. I’m thinking probably not…but I would like to be sure.
We fly to San Diego early Thursday morning and we are flying back on Saturday night so we will be here on Sunday for my fundraiser. I sure hope you are coming! I am so excited to see everyone and see what my wonderful friend has put together for me. I know Sherri is working very very hard to make this a superb event and I am so humbled by the support I receive from all of you. It never ceases to amaze me that after a year long battle the support and love is just as strong as ever. The ability to give just keeps coming, the love keeps flowing. I am forever in the debt of my friends and family and can’t wait to someday pass this all forward.
It is certainly going to be a bittersweet trip. My aunt receives her award on Saturday and it looks like her three boys, including her son and grandson from Minnesota, are going to make it, so it’s going to be a real family event. I wish my son could come too, but I couldn’t afford another ticket and he couldn’t afford to take the time off work. He is sending his love, and she knows that. His priority has to be working and taking care of his family right now, and that doesn’t include a quick trip to San Diego.
It’s hard to believe that this will probably be the last time I will see my aunt in this lifetime, in this world. That just doesn’t seem possible. How does one reconcile that in their soul? How do you see someone you have known and loved your entire life, hold their hand and say goodbye? I have been lucky to not have to say goodbye many times in my life. I am not sure how to do this, I am not sure what to do as my hearts breaks and I am at a total loss as to how to help my mother through what is going to be one of the most difficult times of her life. I can’t imagine loosing my brother, much less a twin sister. How do I help her? How do I ease her sorrow? The only thing I know to do is to be there for her…I hold her hand, I hug her, I love her, I pray for her and I be the daughter she raised me to be. Love can conquer it all, can’t it? And I will love my mother with all my heart through her sorrow that will never cease. I don’t think you ever get over a loss like this, the pain just diminishes over time, and I will be there for her as long as we are in this life together. I will be the rock foundation for my mom like she has been for me my entire life. I have a good example in her to hold on to.
And as I cling to my Aunts hand one last time, tell her how much I love her and how much she has meant to me in my life, I will not hold back. For I know that this life is temporary, and although we will see each other in some capacity on the other side of this world; I know that we won’t get another chance to say what needs to be said here in this time and space. I have learned that through this journey of mine. Say what needs to be said, you won’t get another chance. Love with all your heart while you are here, for it’s the love that will carry you through the sorrow and the tears and it’s the love that will carry my aunt to the other side. It is the love she will leave behind, and it is the love that she will take with her. It’s all about love. Love is the beginning, the end, the middle, the thread that holds it all together. It’s a cliché, but its true, its all about love.
So love each other, my friends. Love with all your heart. Don’t miss a chance to tell people you love them and share your heart with them. The more you feed your heart with love, the bigger it will grow and the stronger it will become, and that strength is what will carry us through every day. Feed your heart, feed your life, feed your soul with the foundation of all things good and right…Love.
I had a mammogram too, but I have no reason to think that anything would be abnormal but will be picking up the results from that today anyway, just to be sure. With my history of this cancer, I wouldn’t be surprised to have it pop up anywhere, even back where it started. I’m thinking probably not…but I would like to be sure.
We fly to San Diego early Thursday morning and we are flying back on Saturday night so we will be here on Sunday for my fundraiser. I sure hope you are coming! I am so excited to see everyone and see what my wonderful friend has put together for me. I know Sherri is working very very hard to make this a superb event and I am so humbled by the support I receive from all of you. It never ceases to amaze me that after a year long battle the support and love is just as strong as ever. The ability to give just keeps coming, the love keeps flowing. I am forever in the debt of my friends and family and can’t wait to someday pass this all forward.
It is certainly going to be a bittersweet trip. My aunt receives her award on Saturday and it looks like her three boys, including her son and grandson from Minnesota, are going to make it, so it’s going to be a real family event. I wish my son could come too, but I couldn’t afford another ticket and he couldn’t afford to take the time off work. He is sending his love, and she knows that. His priority has to be working and taking care of his family right now, and that doesn’t include a quick trip to San Diego.
It’s hard to believe that this will probably be the last time I will see my aunt in this lifetime, in this world. That just doesn’t seem possible. How does one reconcile that in their soul? How do you see someone you have known and loved your entire life, hold their hand and say goodbye? I have been lucky to not have to say goodbye many times in my life. I am not sure how to do this, I am not sure what to do as my hearts breaks and I am at a total loss as to how to help my mother through what is going to be one of the most difficult times of her life. I can’t imagine loosing my brother, much less a twin sister. How do I help her? How do I ease her sorrow? The only thing I know to do is to be there for her…I hold her hand, I hug her, I love her, I pray for her and I be the daughter she raised me to be. Love can conquer it all, can’t it? And I will love my mother with all my heart through her sorrow that will never cease. I don’t think you ever get over a loss like this, the pain just diminishes over time, and I will be there for her as long as we are in this life together. I will be the rock foundation for my mom like she has been for me my entire life. I have a good example in her to hold on to.
And as I cling to my Aunts hand one last time, tell her how much I love her and how much she has meant to me in my life, I will not hold back. For I know that this life is temporary, and although we will see each other in some capacity on the other side of this world; I know that we won’t get another chance to say what needs to be said here in this time and space. I have learned that through this journey of mine. Say what needs to be said, you won’t get another chance. Love with all your heart while you are here, for it’s the love that will carry you through the sorrow and the tears and it’s the love that will carry my aunt to the other side. It is the love she will leave behind, and it is the love that she will take with her. It’s all about love. Love is the beginning, the end, the middle, the thread that holds it all together. It’s a cliché, but its true, its all about love.
So love each other, my friends. Love with all your heart. Don’t miss a chance to tell people you love them and share your heart with them. The more you feed your heart with love, the bigger it will grow and the stronger it will become, and that strength is what will carry us through every day. Feed your heart, feed your life, feed your soul with the foundation of all things good and right…Love.
Sunday, July 25, 2010
Life Is Good
I went to the Allied Art Show in the park on Friday. I love going to that show. It’s the same vendors every year, rarely anything new, but I just keep on buying the same stuff every year; decorating my back yard with steel recycled into art, buying tye-dye and outrageous dangly earrings to compliment my almost bald head. This year I found a yard ornament that had “Life is Good” boldly cut from stainless steel, which is the perfect compliment to my newly refurbished back yard. It looks amazing and I put it in a place where I can see it everyday and remind me that life IS good, no matter what the circumstances.
I was certainly glad that I took the walker with me and that we went early before the heat really hit full force. The walker allowed me to have something to lean on and something to sit on while waiting for Mike or if I just needed a rest. I can’t thank Nurse Kay enough for allowing me use of that rolling walker. Mom and I share it and it has been a Godsend for both of us. We use it all the time to get around. It’s a lifesaver.
So once the show was over I was left in a puddle of exhaustion, so Mike brought me home to rest. It was still relatively cool under the shade of the backyard trees so I set myself up a nice lounge chair, grabbed a book and made some lunch. I brought everything into the yard on a nice serving tray, got all settled in and realized I’d left my cell phone on the counter. Now, I don’t really need the cell phone, I’m not one of those people that have to have it attached to me at all times, but I was waiting for a return call from someone at the cancer center, so I thought, I’d better get it. You are not going to believe this (actually those of you who know my dogs will) but in the time it took me to go to the kitchen and back, the dogs had successfully scarfed up the entire sandwich, both halves, and licked the plate clean. Hope they got even shares… So, I made another sandwich and started all over. Darn dogs. Hope they enjoyed their turkey on wheat. Once it got too hot I moved into the house and that was all she wrote for the rest of the day; I laid on the couch watching movies and dozing until I dragged myself off to bed by 9pm.
I try to do something everyday and my errand yesterday was to hit the sale at Kohls and see if I could find something to wear in the Bahamas that is cool and actually looks good on my expanded body. I am coming off the steroids, but I think I will still be a pretty hefty woman when we leave in a few weeks, so I have to just find something to wear and deal with it. And as any woman knows, bathing suit shopping isn’t good when you DO look good…so when you look bad…yikes. Anyway, I did find one that I think is acceptable and I just have to deal with the fact that I don’t look like I did a year ago. I am not Ms. Skinny Healthy Fit Look Great In A Swimsuit anymore. I am now Ms. Swollen Bald Sick Hating Swimsuits. So I said to self, “Self, deal with it.” And I will. Because it is the trip that is important, not what I wear to the trip. It is the time that I spend with my daughter and when she looks back in the future; she isn’t going to care if I was skinny or fat, only that I was there by her side enjoying our trip of a lifetime, together. I try to remember that every time we take pictures and I know I am going to be all round and moonfaced and, well, fat (there isn’t a good word for it). When I am gone, the picture, the memory, will survive, not HOW I looked, but the memory of my being there. That is the important thing. So if you are one of those people who hate having your picture taken, think of your family and friends who will give anything to have a memory of you when you are gone. And then buck up and smile!!
Mission accomplished, I picked up a few groceries and came home to sack out on the couch for the rest of the day. The only other activity getting ready for Jessie’s BIRTHDAY PARTY TODAY!!!! I am so excited, except for this whole heat thing. I do not handle heat in the best conditions, so when I am sick, it’s even worse. His party is at 11am over at the park by the Kennewick Library, so there are water features and stuff for the kids, but for us adults who are not going to run through the water…well it’s gonna be just brutal. I figure I’ll stay as long as I can, enjoy as much as I can and when I am overdone, I’ll come home, rest up, and then go to Amrea (Mike’s granddaughters) birthday party at 4pm over at the pool in north Richland. Its gonna be a busy day!! After all that is over, I will collapse on the couch. But a great day will be had, Amrea is five and Jessie is three. What awesome ages to be alive to witness.
Tomorrow is my brain scan. We are going to take a looksie and see if the swelling has come down and if there are any still active tumors. As least that is what I am hoping we are doing. I see Dr. Zhang, neurologist, next week to review the results. The oncologists want me to see my neurologist to see if we can ascertain if the affects of the tumor sites are going to cause long term problems, ie, am I going to be weak on my right side, have headaches, memory loss, and other problems forever, or will they go away with time. Are the tumors going to just stay in my head or will they start to “sluff off” leaving me with…what…that is a good questions. Are there just going to be holes left, or do they fill back in, or what?? There are a lot of unanswered questions and I am hoping that some of them can be answered by this scan. I know I am not going to get all my answers and that most of it is “wait and see” but at least before I leave town I’ll know if there are active tumors lurking in my brain. Pray there is not. Pray for dead dead dead dead dead and gone tumors. I am not seeing Dr. Zhang until next week, but I will pick up the results this week and at least be able to look at the radiologist report to get a sense of what they are seeing. I’ll sure keep you apprised.
Enjoy the day. Remember, Life Is Good, no matter what the circumstances. Buck up and SMILE!!
I was certainly glad that I took the walker with me and that we went early before the heat really hit full force. The walker allowed me to have something to lean on and something to sit on while waiting for Mike or if I just needed a rest. I can’t thank Nurse Kay enough for allowing me use of that rolling walker. Mom and I share it and it has been a Godsend for both of us. We use it all the time to get around. It’s a lifesaver.
So once the show was over I was left in a puddle of exhaustion, so Mike brought me home to rest. It was still relatively cool under the shade of the backyard trees so I set myself up a nice lounge chair, grabbed a book and made some lunch. I brought everything into the yard on a nice serving tray, got all settled in and realized I’d left my cell phone on the counter. Now, I don’t really need the cell phone, I’m not one of those people that have to have it attached to me at all times, but I was waiting for a return call from someone at the cancer center, so I thought, I’d better get it. You are not going to believe this (actually those of you who know my dogs will) but in the time it took me to go to the kitchen and back, the dogs had successfully scarfed up the entire sandwich, both halves, and licked the plate clean. Hope they got even shares… So, I made another sandwich and started all over. Darn dogs. Hope they enjoyed their turkey on wheat. Once it got too hot I moved into the house and that was all she wrote for the rest of the day; I laid on the couch watching movies and dozing until I dragged myself off to bed by 9pm.
I try to do something everyday and my errand yesterday was to hit the sale at Kohls and see if I could find something to wear in the Bahamas that is cool and actually looks good on my expanded body. I am coming off the steroids, but I think I will still be a pretty hefty woman when we leave in a few weeks, so I have to just find something to wear and deal with it. And as any woman knows, bathing suit shopping isn’t good when you DO look good…so when you look bad…yikes. Anyway, I did find one that I think is acceptable and I just have to deal with the fact that I don’t look like I did a year ago. I am not Ms. Skinny Healthy Fit Look Great In A Swimsuit anymore. I am now Ms. Swollen Bald Sick Hating Swimsuits. So I said to self, “Self, deal with it.” And I will. Because it is the trip that is important, not what I wear to the trip. It is the time that I spend with my daughter and when she looks back in the future; she isn’t going to care if I was skinny or fat, only that I was there by her side enjoying our trip of a lifetime, together. I try to remember that every time we take pictures and I know I am going to be all round and moonfaced and, well, fat (there isn’t a good word for it). When I am gone, the picture, the memory, will survive, not HOW I looked, but the memory of my being there. That is the important thing. So if you are one of those people who hate having your picture taken, think of your family and friends who will give anything to have a memory of you when you are gone. And then buck up and smile!!
Mission accomplished, I picked up a few groceries and came home to sack out on the couch for the rest of the day. The only other activity getting ready for Jessie’s BIRTHDAY PARTY TODAY!!!! I am so excited, except for this whole heat thing. I do not handle heat in the best conditions, so when I am sick, it’s even worse. His party is at 11am over at the park by the Kennewick Library, so there are water features and stuff for the kids, but for us adults who are not going to run through the water…well it’s gonna be just brutal. I figure I’ll stay as long as I can, enjoy as much as I can and when I am overdone, I’ll come home, rest up, and then go to Amrea (Mike’s granddaughters) birthday party at 4pm over at the pool in north Richland. Its gonna be a busy day!! After all that is over, I will collapse on the couch. But a great day will be had, Amrea is five and Jessie is three. What awesome ages to be alive to witness.
Tomorrow is my brain scan. We are going to take a looksie and see if the swelling has come down and if there are any still active tumors. As least that is what I am hoping we are doing. I see Dr. Zhang, neurologist, next week to review the results. The oncologists want me to see my neurologist to see if we can ascertain if the affects of the tumor sites are going to cause long term problems, ie, am I going to be weak on my right side, have headaches, memory loss, and other problems forever, or will they go away with time. Are the tumors going to just stay in my head or will they start to “sluff off” leaving me with…what…that is a good questions. Are there just going to be holes left, or do they fill back in, or what?? There are a lot of unanswered questions and I am hoping that some of them can be answered by this scan. I know I am not going to get all my answers and that most of it is “wait and see” but at least before I leave town I’ll know if there are active tumors lurking in my brain. Pray there is not. Pray for dead dead dead dead dead and gone tumors. I am not seeing Dr. Zhang until next week, but I will pick up the results this week and at least be able to look at the radiologist report to get a sense of what they are seeing. I’ll sure keep you apprised.
Enjoy the day. Remember, Life Is Good, no matter what the circumstances. Buck up and SMILE!!
Thursday, July 22, 2010
Round two, day two.
Feeling very weak and had a little nausea this morning, but other than that, I’m doing okay. I’m waiting for the joint pain from the Zomeda to kick in, but perhaps I will get lucky this time and bypass that side effect. The exhaustion seems to be the hardest to deal with, so I am working on activities that can be done while sitting and have been doing a lot of writing, crossword puzzles and even polished my chemo charm bracelet that my mom made me that was in serious need of some polish bling! For those of you who don’t know, my mother created for me a Chamila Charm Bracelet from Kantor Diamond Company, one charm at a time, that represents every single chemo treatment, there is the bracelet and 19 charms, totaling 20 treatments so far. 20 chemotherapy treatments since June 24, 2009. Wow. It’s a beautiful bracelet, I wear it all the time, so make sure to ask to see it if you haven’t, its quite lovely and means the world to me. We have filled the current bracelet, so now…what do we create, a second bracelet?
It went against all that I am, and I struggled…but…I didn’t buy new shoes yesterday for my 20th chemo treatment, which is against my chemo creed, but I just couldn’t justify buying more shoes at this point. Not only do I not NEED anymore shoes (did I actually SAY that, OMG!) but I am not sure how many more treatments I’m going to be doing and I just couldn’t bring myself to spend the money now that I am living on a complete disability paycheck. My money needs to be spent much more wisely, and with the trip to he Bahamas coming, even though it is mostly paid for by life insurance, I still need to be cautious since I don’t know when my income will be increasing, there is no definitive date in the future for me to return to work, so I am trying to budget wisely and learning to live within my reduced income, taking into consideration future medical bills, health insurance, long term care. However, both the physician and I agree that this trip to the Bahamas is as important as the chemo. Trips like this will help me to heal, help me to continue to make it through the ravages of this continued treatment. I think that God knows I need a break. My body is tired and overwhelmed, and a relaxing 10 days with the little girl/grown woman that owns my heart and soul is a perfect way to rejuvenate. So, instead of new shoes, I wore a new dress that I bought at a hippie store in Newport Beach and my favorite pair of bling sandals and all the blingy jewelry I could muster. So, I still felt I met the standard of bling during chemo. No jinx. Just new rituals. Every time I’ll pick out something new to wear, to do. It will be my challenge every chemo…what new, used, borrowed bling will take me through the next treatment!?
There is another big trip we are working on putting together. Most of you know that my mom’s twin sister, Bobbi Jo, has cancer and had decided to try to do a round of chemo. She hated it. She was so sick, not nausea as much as she couldn’t control her bowels, which if any of you has experienced (I have) it is the most awful side effect in the world. I have not been open in sharing that lovely side effect with you, but it has happened to me more that I care to say too. It has to be the worst side effect ever to not be able to be away from a bathroom all day. The physicians couldn’t control the side effect and she refuses to live with it and I can’t say that I blame her. She is 75 years old and this treatment is not going to give her a quality of life, well then forget it. I agree with her. So, she is suspending treatment and is going to let the disease run its course. They are more concerned with her respiratory problems and her inability to breathe, her chest cavity keeps filling with fluid, and the respiratory issues will probably get her before the cancer will. So, let’s talk about the trip.
My aunt lives in a part of San Diego called City Heights. We don’t have a City Heights in Tri-Cities, but suffice it to say its not the nicest part of town, full of a plethora of races and religions all made up into little blocks stacked tightly together and opposing each other. The young hookers walk on El Cajon Blvd, easily recognized by their age and look on their faces showing the complete loss of hope. Bobbi Jo, not so many years ago, spent many many hours working with the police department on a volunteer basis helping to clean up City Heights and working with the residents to make it a better place to live and grow. We are proud of all she did, and I know my mother spent more than a few nights worrying about her sister and her volunteer job and her safety, but she stayed safe and made changes that will last for many years to come. So, on July 31st the council of City Heights are recognizing her for her work to making City Heights a better place to live. It is going to be pretty low key, at her house on her porch, with the local city representatives and members of the city council and police department. So, we (mom, dad, Peyton and I) really want to try to fly down there to be a part of this day. I know that my chances to see my aunt alive are limited and this seems like as good of an opportunity as any to spend some quality time with her, see her get this award and let he know how much I love her and how much I have enjoyed her presence in my life. I want to tell her before its too late that she means so much to me, and always will. Mom and dad are coming over today and we will work on reservations. The challenge will also be that my fundraiser is August 1st, and I have to make sure to be back for that event!! So I’m looking at tickets flying out on Thursday and back late Saturday night or early Sunday morning, but have no fear, I’ll be here by Sunday for my own event!!
For a quick update on my mom (aka Gma aka GG) they are going to run more tests, but the bone that was cracked is healing nicely and she is getting around pretty well, unfortunately the pain that has appeared in her ankle is probably related to her back and very well may be permanent caused by all her back problems. She is waiting for an appointment with Dr. Fewel to assess the long term treatment. But, hopefully this does not impede her ability to get to San Diego. I think it would sure be wonderful to have all of us there to share in this accomplishment with her.
Onward and upward, with a smile on my face, which I find comes easier today. Maybe it’s the news of no chemo for five weeks, or maybe it’s just a recognition of my need to reassess the path of my life, or maybe I just changed my attitude, but I feel better than I have in a week, more positive and optimistic, more joyful, more full of hope. Maybe it’s the prayers that you are all sending me, maybe it’s the prayers I’m sending myself, but whatever it is, its working, I’m smiling, I’m happy, Life is Good. Come along and join me!
It went against all that I am, and I struggled…but…I didn’t buy new shoes yesterday for my 20th chemo treatment, which is against my chemo creed, but I just couldn’t justify buying more shoes at this point. Not only do I not NEED anymore shoes (did I actually SAY that, OMG!) but I am not sure how many more treatments I’m going to be doing and I just couldn’t bring myself to spend the money now that I am living on a complete disability paycheck. My money needs to be spent much more wisely, and with the trip to he Bahamas coming, even though it is mostly paid for by life insurance, I still need to be cautious since I don’t know when my income will be increasing, there is no definitive date in the future for me to return to work, so I am trying to budget wisely and learning to live within my reduced income, taking into consideration future medical bills, health insurance, long term care. However, both the physician and I agree that this trip to the Bahamas is as important as the chemo. Trips like this will help me to heal, help me to continue to make it through the ravages of this continued treatment. I think that God knows I need a break. My body is tired and overwhelmed, and a relaxing 10 days with the little girl/grown woman that owns my heart and soul is a perfect way to rejuvenate. So, instead of new shoes, I wore a new dress that I bought at a hippie store in Newport Beach and my favorite pair of bling sandals and all the blingy jewelry I could muster. So, I still felt I met the standard of bling during chemo. No jinx. Just new rituals. Every time I’ll pick out something new to wear, to do. It will be my challenge every chemo…what new, used, borrowed bling will take me through the next treatment!?
There is another big trip we are working on putting together. Most of you know that my mom’s twin sister, Bobbi Jo, has cancer and had decided to try to do a round of chemo. She hated it. She was so sick, not nausea as much as she couldn’t control her bowels, which if any of you has experienced (I have) it is the most awful side effect in the world. I have not been open in sharing that lovely side effect with you, but it has happened to me more that I care to say too. It has to be the worst side effect ever to not be able to be away from a bathroom all day. The physicians couldn’t control the side effect and she refuses to live with it and I can’t say that I blame her. She is 75 years old and this treatment is not going to give her a quality of life, well then forget it. I agree with her. So, she is suspending treatment and is going to let the disease run its course. They are more concerned with her respiratory problems and her inability to breathe, her chest cavity keeps filling with fluid, and the respiratory issues will probably get her before the cancer will. So, let’s talk about the trip.
My aunt lives in a part of San Diego called City Heights. We don’t have a City Heights in Tri-Cities, but suffice it to say its not the nicest part of town, full of a plethora of races and religions all made up into little blocks stacked tightly together and opposing each other. The young hookers walk on El Cajon Blvd, easily recognized by their age and look on their faces showing the complete loss of hope. Bobbi Jo, not so many years ago, spent many many hours working with the police department on a volunteer basis helping to clean up City Heights and working with the residents to make it a better place to live and grow. We are proud of all she did, and I know my mother spent more than a few nights worrying about her sister and her volunteer job and her safety, but she stayed safe and made changes that will last for many years to come. So, on July 31st the council of City Heights are recognizing her for her work to making City Heights a better place to live. It is going to be pretty low key, at her house on her porch, with the local city representatives and members of the city council and police department. So, we (mom, dad, Peyton and I) really want to try to fly down there to be a part of this day. I know that my chances to see my aunt alive are limited and this seems like as good of an opportunity as any to spend some quality time with her, see her get this award and let he know how much I love her and how much I have enjoyed her presence in my life. I want to tell her before its too late that she means so much to me, and always will. Mom and dad are coming over today and we will work on reservations. The challenge will also be that my fundraiser is August 1st, and I have to make sure to be back for that event!! So I’m looking at tickets flying out on Thursday and back late Saturday night or early Sunday morning, but have no fear, I’ll be here by Sunday for my own event!!
For a quick update on my mom (aka Gma aka GG) they are going to run more tests, but the bone that was cracked is healing nicely and she is getting around pretty well, unfortunately the pain that has appeared in her ankle is probably related to her back and very well may be permanent caused by all her back problems. She is waiting for an appointment with Dr. Fewel to assess the long term treatment. But, hopefully this does not impede her ability to get to San Diego. I think it would sure be wonderful to have all of us there to share in this accomplishment with her.
Onward and upward, with a smile on my face, which I find comes easier today. Maybe it’s the news of no chemo for five weeks, or maybe it’s just a recognition of my need to reassess the path of my life, or maybe I just changed my attitude, but I feel better than I have in a week, more positive and optimistic, more joyful, more full of hope. Maybe it’s the prayers that you are all sending me, maybe it’s the prayers I’m sending myself, but whatever it is, its working, I’m smiling, I’m happy, Life is Good. Come along and join me!
Wednesday, July 21, 2010
Round Two
Well the day is here, round two, day one. I was tired but ready. I had requested entire dose be given today, feel horrible for the next few weeks, and then feel golden for both my fundraiser on Aug. 2nd and my trip to the Bahamas on Aug. 9th. But, I found out that it has to be given ½ and ½, so rather than give it to me all at once, they are going to delay the second half until I get back from the Bahamas. I think that sounds awesome!! So I had chemo today and will not get another dose until August 23rd. That sounds fantastic. I am so excited. I get a chance to feel normal again. Five whole weeks off chemo with a trip to a tropical island in between, this is going to be the best month I have had in a year!
All that said, I feel like my life is at a standstill. I mean, is this my life now? My job is to get well, yes, but what else? There has to be more than just healing. I need to reach out and find some purpose, some meaning to my days, my life. I can have a wonderful, meaningful, fulfilled life and live like this forever. It’s all a matter of my perspective. I think I want a normal life, but normal will never be normal anymore. Normal is an illusion; I mean no one has a “normal” life. Everyone’s life is different, filled with different priorities, different goals and desires. So, what is my priority, my goal? Where do my desires lead me? That’s what I need to identify. Take the time to recognize what should be filling my days to make them meaningful, to make them days that take me through the rest of my life. I don’t know what tomorrow, what next month or next year brings, so I need to focus on today, and what fulfills me today.
Round two is in, but with such great news of a break on the horizon, it gives me the strength to plow right on through this, with a renewed sense of purpose. The goal to be as well as possible by the time I leave with Peyton so that it will be the trip of a lifetime that we dream it to be. Mother and daughter, friends for a lifetime, Bahamas bound.
All that said, I feel like my life is at a standstill. I mean, is this my life now? My job is to get well, yes, but what else? There has to be more than just healing. I need to reach out and find some purpose, some meaning to my days, my life. I can have a wonderful, meaningful, fulfilled life and live like this forever. It’s all a matter of my perspective. I think I want a normal life, but normal will never be normal anymore. Normal is an illusion; I mean no one has a “normal” life. Everyone’s life is different, filled with different priorities, different goals and desires. So, what is my priority, my goal? Where do my desires lead me? That’s what I need to identify. Take the time to recognize what should be filling my days to make them meaningful, to make them days that take me through the rest of my life. I don’t know what tomorrow, what next month or next year brings, so I need to focus on today, and what fulfills me today.
Round two is in, but with such great news of a break on the horizon, it gives me the strength to plow right on through this, with a renewed sense of purpose. The goal to be as well as possible by the time I leave with Peyton so that it will be the trip of a lifetime that we dream it to be. Mother and daughter, friends for a lifetime, Bahamas bound.
Tuesday, July 20, 2010
Plugging Along
Peyton made it home safe and sound Sunday night, much to her dismay. If she could have she would have stayed and just flown straight to the Bahamas…but life has the means to get in the way and the reservations were set and she had to come home. She missed me, sort of, she is just a young woman who would rather be with her boyfriend than with her mom, and hey, I get it, totally. But it still would be nice to have been missed, maybe just a little. Oh well, such is life living with a teenage girl.
I’m starting to feel better, moderately. I’m tired, but am able to get around a little bit better. The joint pain has subsided, thank goodness and I am scheduled for chemo on Wednesday, which is a day earlier than normal, but my blood work on Friday was good enough already to warrant chemo. But I would still like higher platelets going in, so keep praying! I am going to ask to see if I can take the entire dose at once rather than take ½ at day one and ½ at day 15. If I do this, then when I leave for the Bahamas on August 9th, I will be way past the nadir and past the feeling horrible and should be able to really enjoy the trip with Peyton. This is such special trip. One that I never thought I’ve live to enjoy, so I want to do all I can to make it a trip worth remembering. I handled the ½ dose well, so I don’t see why I couldn’t handle a full dose with a little stronger side effects and then feel better by our travel date. I have put the question out there and we will discuss more Wednesday at my doctors appointment prior to my chemo. If it is the right thing to do, then I want it to be so. I am praying for the right decision to be made, not necessary my decision. So is that good prayer direction for your prayer? The right decision, not necessarily the decision I want. And I am okay with whatever God deems! I trust Him totally.
I am working on the details of the Bahamas trip; rest days, and swim with dolphin’s days, and rest days and massage days and rest days and shopping days and rest days… you get the picture. Most of the trip is rest, relaxation, sitting on the beach, Peyton soaking up the sun, me resting under an umbrella. I will be a perfect way to recover from round two of chemo. Then as soon as I get back I dive right into round 3 and then after round 3, we are doing to do a CT and see how it’s going. So, there is a good plan in place right now; if round 3 comes out clear, I’ll do a few more for good measure, so I’m not done, but getting close!!
On July 26th I have another brain scan scheduled and we’ll hopefully be able to know whether or not those tumors are sloughing off or going to be hanging out inside my brain for awhile. I have an appointment with Dr. Zhang following the brain scan to identify any residual side affects that m ay occur as a result of these tumors. Hopefully the answer is none.
I am trying hard to find normalcy in my days and in my life. This is my life now, today, not forever. Right now my job is to get well, to focus on my health and well-being. My purpose in life is to survive and survive well. That must be my focus. I have so much left to do in my life and if I don’t focus on getting well, then I won’t be here to accomplish all the things still left to do in my life. So survive I must and I will. I am taking advantage of wellness activities at the Cancer Center. I am spending time focusing inward on healing, eating right, trying to walk when I can. Maintaining a positive attitude. And I think that is the key. If I can keep my attitude positive, I can survive. Cancer cannot kill me when I’m smiling. So I Smile. That’s what I’m doing, as much as I can, everyday. Smiling despite the challenges I face, smiling because I know a secret. I’m going to survive. :-)
I’m starting to feel better, moderately. I’m tired, but am able to get around a little bit better. The joint pain has subsided, thank goodness and I am scheduled for chemo on Wednesday, which is a day earlier than normal, but my blood work on Friday was good enough already to warrant chemo. But I would still like higher platelets going in, so keep praying! I am going to ask to see if I can take the entire dose at once rather than take ½ at day one and ½ at day 15. If I do this, then when I leave for the Bahamas on August 9th, I will be way past the nadir and past the feeling horrible and should be able to really enjoy the trip with Peyton. This is such special trip. One that I never thought I’ve live to enjoy, so I want to do all I can to make it a trip worth remembering. I handled the ½ dose well, so I don’t see why I couldn’t handle a full dose with a little stronger side effects and then feel better by our travel date. I have put the question out there and we will discuss more Wednesday at my doctors appointment prior to my chemo. If it is the right thing to do, then I want it to be so. I am praying for the right decision to be made, not necessary my decision. So is that good prayer direction for your prayer? The right decision, not necessarily the decision I want. And I am okay with whatever God deems! I trust Him totally.
I am working on the details of the Bahamas trip; rest days, and swim with dolphin’s days, and rest days and massage days and rest days and shopping days and rest days… you get the picture. Most of the trip is rest, relaxation, sitting on the beach, Peyton soaking up the sun, me resting under an umbrella. I will be a perfect way to recover from round two of chemo. Then as soon as I get back I dive right into round 3 and then after round 3, we are doing to do a CT and see how it’s going. So, there is a good plan in place right now; if round 3 comes out clear, I’ll do a few more for good measure, so I’m not done, but getting close!!
On July 26th I have another brain scan scheduled and we’ll hopefully be able to know whether or not those tumors are sloughing off or going to be hanging out inside my brain for awhile. I have an appointment with Dr. Zhang following the brain scan to identify any residual side affects that m ay occur as a result of these tumors. Hopefully the answer is none.
I am trying hard to find normalcy in my days and in my life. This is my life now, today, not forever. Right now my job is to get well, to focus on my health and well-being. My purpose in life is to survive and survive well. That must be my focus. I have so much left to do in my life and if I don’t focus on getting well, then I won’t be here to accomplish all the things still left to do in my life. So survive I must and I will. I am taking advantage of wellness activities at the Cancer Center. I am spending time focusing inward on healing, eating right, trying to walk when I can. Maintaining a positive attitude. And I think that is the key. If I can keep my attitude positive, I can survive. Cancer cannot kill me when I’m smiling. So I Smile. That’s what I’m doing, as much as I can, everyday. Smiling despite the challenges I face, smiling because I know a secret. I’m going to survive. :-)
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