Saturday, July 31, 2010

Quick Update

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.

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!

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 clichĂ©, 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!!

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!

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.

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. :-)

Sunday, July 18, 2010

The Darkness Passes

The darkness has gone away, thank goodness, and left without a trace. I spent the last few days resting and trying to give my body a break from all that it’s been through in the last few months. I try to be understanding and sympathetic to its plight. I know I am too hard on my body and I expect too much from it. I expect to be feeling fine when I am struggling to stay alive. I expect to have energy when the reserves have been all but tapped. I expect to run when my feet can barely carry me one more step. I know it; I need to give myself a break.

Agonizing knee pain set in last night and I woke up with unbelievable discomfort in my knees and ankle joints this morning. I took an extra pain pill and put some ice on them to take the swelling down. It’s so strange when this happens; there is just no rhyme or reason to it. I didn’t do anything that would cause undue stress on any of the joints in my body, much less my knees or ankles; they just randomly hurt and swell for no discernable reason. Crazy.

But at least the darkness is gone. The overwhelming exhaustion has turned into just a total exhaustion, which I guess I can handle, since it’s not like I have a choice in the matter anyway. But that sadness, those shadows seem to have run away, and for that I say good riddance. I hate it when I have to battle depression on top of this stupid cancer. Isn’t one thing enough? I guess the two sort of go hand in hand. It’s hard to not be depressed when one is facing a life threatening illness, but give me a break, let’s just handle one thing at a time!!

Peyton comes homes tonight and I can’t wait. I realize how much I miss having her be a part of my everyday life. I have enjoyed the quiet, but have missed her bubbly energy, her positive attitude and yes, even her nagging and hovering over me to make sure I go to bed on time, I’m not doing to much, all the little things that she does that shows me how much she cares, and reminds me daily of how much I have to live for. I do think that her absence in some ways may have contributed to the darkness that threatened me last week. No blame, of course, I want my daughter to travel and have fun and never feel beholden to stay home with an ailing mother, however…. Her presence in the house, in my life everyday gives me a sense of purpose and belonging that I realize I depend on greatly. She truly is a lighthouse in the storm that is my life.

So I guess today I rest too since I can’t really do anything. I can barely walk and am hoping that maybe mom isn’t using the rolling walker today so I can borrow it back and use it as I try to get around the house today.

More tomorrow on my daughter’s trip to Canada. I just spoke with her and although she misses me, she said she really isn’t ready to come home yet, but alas, the tickets are purchased and the flight is still scheduled…so I guess my little darling is coming home!!

Friday, July 16, 2010

Total Exhaustion. And the Darkness.

Complete and utter total exhaustion. The kind of exhaustion where I can’t move, I can’t think, I can’t do anything. That’s what hit me yesterday and seems to be continuing today and for some reason I can’t snap out of it. I want to be Nicolas Cage to Cher on Moonstruck so she can get in my face, slap me hard and tell me to “snap out of it”! But no such luck. I think I am going to have to wait it out on this one. I don’t think I can just snap out of it like I want. And it totally sucks. It’s been one week since my last chemo and that nadir is kickin’ in and there is really just nothing I can do. I am trying to eat right, get a little exercise, which isn’t much considering I can barely walk up the stairs, rest at least 8 hours a night…but nothing seems to be helping.

The hard part of the total exhaustion is that there is a deep darkness on the otherside that I don’t want to find myself slowly slipping into. I say I am so tired and people echo their feelings of exhaustion also. While am not unsympathetic to other people’s tiredness and plights; I have to say that it is frustrating because an average person’s exhaustion can’t even come close to a cancer patient’s total exhaustion. It’s beyond what you or even I could have envisioned. Your body simply doesn’t work, your arms don’t respond to commands, you drop everything, and the stairs are the most daunting task you can ever imagine facing and it takes all the energy you can muster just to climb a flight of stairs. Then you hope you can remember why they heck you were headed upstairs once you get there.

Typing is incredibly challenging. I keep forgetting what I was going to type and then I type the wrong thing and believe it or not, will actually doze off in the middle of a sentence, Now, that is BAD, especially when I have spent my life as a secretary.

But the scariest part is the overpowering sorrow that is lurking just the other side of the darkness. I can see it over there, reaching out for me, trying to trap me in its sticky web. The sorrow that would threaten to completely overwhelm me and make me wonder why I would want to keep on doing this. The sorrow that makes me wonder if this treatment is worth the remote possibility of a cure? Is the cure really a cure? Is the cure waiting for me on the other side of all this misery or am I doing this all for nothing. I want to believe with all my heart that there is good intentions and positive outcomes awaiting me. That if I just persevere to the other side this nightmare, it will be over and I will find myself happy and healthy and going back to a life of my own making that includes all the people I love, my family a job…All the wonderful average things that life has to offer that are so fulfilling to me.

But I have to confess, there is that piece of me that is scared and wondering. That piece that calls out to God and just asks that this be over, whatever “over” may be; be it this world or the next. I ask God; please get me through this misery. Get me back to a life that I can live, one that doesn’t involve all this sickness.

I lay on the couch yesterday, unable to move. I wanted water, but was unable to get up and fill my glass, I wanted food, but the thought of trying to prepare anything was beyond my realm of abilities. So I just laid there on the couch, TV in the background and prayed to live long enough to make it to the Bahamas with my daughter. Then I prayed to make it on a simple trip just me and my son and then I prayed that it all be over, one way or the other, that this could all just be done. I am not ready to cross over, but I am ready to be done with this treatment. I am tired, I am sad, I am overwhelmed, I am alone. You are all with me, but when it comes to the everyday tasks, I am alone. Feeding the dogs, watering the flowers (which I do love to do when I have the energy), cleaning up the kitchen, (my dishes from yesterday are STILL in the sink which never happens around here), taking out the trash, cleaning up after the dogs. You get the picture. The things that everyone does everyday and takes for granite. A whole host of simple tasks that become overwhelming tasks when I can barely get up from the couch. I thought about calling someone over to help last night, but didn’t want to bother anyone, and I was hoping that Mike would come by; he knew I was having a bad day, but no such luck; he had his soccer matches and went home. So, all the tasks were left for today, which is fine, they will or will not get done… In the words of a generation. Whatever. I mean really, who cares?

I just am struggling to stay away from the darkness. I fear the darkness. I don’t want to even be near its ugly presence. I want to stay in the light to matter how dimly lit, light is light and that is where I want to be. For I fear if I slip into that dark place, it will take a monumental effort to come back and I don’t know if I have it in me right now to make it back. So pray for a change in heart and attitude and a little bit of energy. I don’t care if I can run up the stairs; I just want to be able to make it up the stairs. I don’t care if I’m jumping for joy while cooking, but I would like to have the energy to stand there and heat up some soup! It’s truly the little things that keep me from sliding. The warm sunshine, the smile of my friends, the voice of my daughter, a visit from my son. Those will keep me here; I will NOT fall over that edge, no matter how much it taunts me. I’m staying here, in the sunshine, with all of you.

Thanks for helping to keep me there.

Thursday, July 15, 2010

More Platelets. Please.

The exhaustion has hit me full force in the last 24 hours. Again, I feel like my body is encased in lead and it is heavy and bulky and hard to move. I seem to get like this every time I take a trip somewhere, so I guess there is a message…be ready to crash after every trip. Because not going is not an option. As long as I am still able, I will go on every trip I can with the people I love. I can deal with the aftermath because the cause is so important. I will treasure these memories that I made over the weekend and nothing and no one can take that away from me. I have learned how important this time is and how incredibly important the people we love are to us and to our future. No matter what happens, Jessie, Elena and Houston will have the memories of all of us together, taking Jessie to the beach for the first time, and THAT is worth a little exhaustion.

I am weak and I drop everything. It’s crazy, like my hands are not mine. My poor phone has hit the floor so many times that I am surprised it even works. Thank goodness that Peyton had me use the heavy duty cover instead of the pretty pink one, I think she has saved my new phone…and speaking of Peyton…she has some pretty exciting news to share from her trip to Canada. Apparently she got to drink champagne out of the Stanley Cup with Jonathan Towes. Now, I’m not a hockey fan, but I DO know enough to know that 1) drinking champagne out of the Stanley Cup is a pretty big deal and 2) Jonathan Towes is the team captain of the Chicago Blackhawks who won the Stanley Cup. So, I guess put those two little factoids together and it is a pretty big deal. Grandpa and my brother, who are huge hockey fans, are incredibly jealous and I have to say that my daughter has done an excellent job of rubbing it in to them, as she should. They would if the tables were turned! My family loves to tease each other, and this is a biggy. She is gonna get miles and miles out of it!!

I miss my daughter, but I have to say I am enjoying my week alone, the quiet. I watch what movies I want to watch and have no one checking up on me, not that I mind her checking, but I do understand now how my mother must feel when I hover over her, wondering if she is okay, imploring her to be careful, take care of herself, the whole gamet of worries that we impose on those we love, only because we care so much. I know how much Peyton cares, because I know how much I care about my mother. It is a circle. Every time I start to get irritated because my family (or my friends) are hovering over me I think of how I would feel if it was them with cancer, if it was them who might die, if it was them who was sick and scared, and I might loose them. It puts the entire thing in perspective. I would be terrified beyond belief.

So when your family worries about you, let them. For if the tables were turned, you would worry about them too. And when people want to do things for you, let them, because it empowers them. I think that the people who love those who us who are sick feel helpless, and allowing them to help, no matter what that assistance is, gives them a sense of peace knowing that they are helping someone they love through a rocky and rough journey. And no matter how small or great, every little piece of help is warranted and welcomed.

I have blood work on Monday and we round two of chemo scheduled for next Wednesday, if my blood work improves. I know my platelets are low, really low. They were only 89 going in to this round and I have bruises and cuts everywhere that I cannot explain. If you tap me, I swear, I get a bruise!! So, I am doing what I can to elevate my platelets, which is very little, protein drinks, high protein foods, rest. But there is really nothing that can be done for platelets. They just have to come up on their own. So I am asking that you pray for my platelets to improve so I can have this round of chemo. I’d like to have it on time so that I can get the whole dose and then be ready for the Bahamas with Peyton on August 9th. That’s my plan and I’m sticking to it! So, God, please give me platelets. Lots of them. Do you all remember when you prayed for platelets about 8 months ago, and I got them, in fact more than I needed? Well, we can do that again. The doctors were amazed, NO ONE comes up with that many platelets overnight without a transfusion, but I did, and that, my friends, is the power of prayer. Platelets. God give me platelets.

So I’m resting today, as much as possible. Reading, doing crosswords and working on platelets. That’s my job. Thanks for joining me in the efforts. Pray for platelets!!

Wednesday, July 14, 2010

A Change in Plans

Well it ended with a little excitement. And I learned, again, I should listen to my son. He has always had good intuition and insight. Premonition you might call it, but he has always had it and I should have listened.

When we got up yesterday Houston felt that we should head home, skip the zoo; do it another time. Although I was tired and was ready to go home, I thought he was being a pisspot and just didn’t want to go to the zoo. The indignant grandma looking at her son who is depriving his son of a trip to the zoo. It was a short lived “argument” (it wasn’t really an argument) Houston relented and we had breakfast and headed to the zoo about 10ish. We had decided to wait until rush hour had ended so we could miss most of the traffic, at least that was the plan. And like all plans, this one was subject to change, big time. We headed to the zoo which is down the I-5, to the I-405 to the 26W which is always backed up and is uphill. It was stop and go traffic. Stop. Go. Stop. Go. In an older Jeep Cherokee with an older clutch and a propensity (which we didn’t know about) to overheat…so about an hour later…

It was miserable. Why was there so much traffic to the stinkin’ zoo on a Tuesday morning??? Well, when we were finally getting into the parking areas, our vehicle died completely, it was already smelling warm, and it died. Crap. So Houston and Elena jumped out, I got in the driver seat, and they PUSHED a Jeep Cherokee UPHILL for about 30 feet to get it into a 20 minute parking space. Amazing what adrenaline can do.

Anyway, a zoo “official” came to speak to us, and we were informed all the lots were full (so we wouldn’t have been able to park anyway) and apparently the second Tuesday is $4 zoo day and the zoo becomes a zoo. They were turning people away and telling them to try again later. Meanwhile, we have a dead car, traffic everywhere and are in a 20 minute parking space.

So, I did what any strong woman does…call her daddy. Yup. That’s what I did. Called dad. Got advice. We called a tow truck, got the address of the nearest Jeep dealership and started the process of waiting. In the meantime dad did some thinking and he told me that he had a friend in his younger days that he used to four-wheel with and he had a Jeep Cherokee and it used to vapor lock all the time. Once it sat for awhile, it would start fine. So, we waited and sure enough, about 45 minutes later the car started. We canceled the tow truck ($40 cancellation fee…not bad!) and got the heck out of dodge! As we were leaving, the zoo officials cleared us a path so we wouldn’t have to stop and go again and we had a straight shot out of the parking lot and to the DOWNHILL portion of highway 26.

So we didn’t get to see the zoo. That’s okay. We will save it for another trip. We stopped at Multnomah Falls and spent some time there and then again at Spookys for pizza to break up the trip for Jessie, and a great time was had by all. Jessie loved the falls and liked the water in the stream even better. And he was such a great little boy for the trip and all its little issues. He had one meltdown, which at the end of a vacation is to be expected. Again, my perfect little boy. I know I say it – but it’s true!!!!

I waited to hit a wall that luckily didn’t come until after I got home. I was SO tired last night I could barely move and again this morning I feel like my body weighs 500 pounds, which is better than the 1000 pounds it usually feels like when I hit my walls! I’m going to take it easy today, walk the dogs with the grandparentals while Durashine cleans my house, stop by the grocery store, and tonight I have a hot date at the soccer field for YMCA 3-year old soccer match with Mike’s granddaughter, Lilly. I can’t wait. We went last week too and it is so much fun to watch them run and play. I can’t wait to put Jessie into sporting activities!

So, I had a wonderful time. I thank God for giving me these moments, these experiences and memories, good and bad. Because that is what life is made up of, both. We can’t experience the good without experiencing the not so good. And if all experiences were good, how would we even know if there wasn’t a little shadow in the sunlight? And each time something challenging happens, it makes us appreciate the happy a little more, makes us see the sunlight a little brighter and helps us to see each other a little clearer. For I think that our true personality and fortitude comes out during the challenging times. How do we handle adversity? How do we handle a fussy 2 year old and a broken down car? That’s when we should shine, when we step up to the plate and put on our big kid underwear and deal with it keeping our wits and our sense of humor and doing the best we can under the circumstances. During adversity; that is where we should shine.

So the next time you are faced with a challenging situation, think of how to be the light. Think of how to turn it into an experience to remember, instead of one you would rather forget. I’ll remember Jessie standing on the wall, taller than tall, towering over me, smiling and reaching out to me, ready to jump, ready to fly, completely unaware of anything wrong. That’s how I choose to remember our trip to the zoo.

How will you remember your next bout of adversity?

Tuesday, July 13, 2010

A Weekend at the Coast

The coast has been a blast. I have been writing blogs everyday, but unable to post due to a lack of internet access, which was okay. It’s nice to not have internet service. No one could get ahold of me, which really didn’t bother me. Peyton is in Canada, Mom and Dad are doing fine, Mike is doing soccer, and I’m with my grandson. Is there a better place to be?

We started our trip with a straight shot to the coast spending that first day watching Jessie in the waves. He first ran to the water and then ran out and then came back and assessed, decided it was worth it and was back in the water. That is where he stayed the rest of the day. We had a wonderful time watching him, encouraging his play. A moment to remember. On Sunday we spent the morning in the waves and then headed up to Lincoln City so that Elena and I could do some shopping and daddy and Jessie could go to the beach. We shopped uninterrupted and Jessie played uninterrupted…could we have a better time? We headed to a little Mexican food restaurant in Yachats for dinner on Sunday night where the food was great, the service was awful, but the company and Jessie made for a perfect evening. I have heard stories about Jessie misbehaving at restaurants, and let me tell you, I have not seen evidence of it. With me, he has been perfect at all public places. Absolute perfect. I love that child more than words can say.

Monday we headed out and went to the aquarium in Newport which was awesome. All of us went from one exhibit to the next to the next in awe of the display. I have to stop here and thank my mother and my son. They were insistent that I bring the rolling walker for the zoo. I resisted, indicating I’d be fine, didn’t need it, yada yada, but they insisted. And even when it really wasn’t going to fit and I told my son to leave it behind, he refused and brought it anyway, and I am SO glad he did. That walker got me through the aquarium. I had something to lean on, something to rest on when I got tired. It was a lifesaver. We had a fabulous time. It was fantastic.

After the aquarium we headed to our hotel in Portland and Jessie slept the entire way. He was SO tired, what a sweet baby. We sat in the backseat and I held his hand as he fell asleep, so happy and satisfied.

Last night Elena and Houston went out to dinner and Jessie and I had a night in. There was no DVD player and I couldn’t get the car DVD to work in the room so it was pretty easy…no TV. Jessie didn’t like it at first but I simply told him, sorry, can’t make work what doesn’t work and we are going to have dinner (room service chicken nuggets – yummy) and then we are going to take a bath and then we are going to read. So that’s what we did…and you know what…we had a fabulous time! There were no bath toys, so we made due with a room service plate cover (it has a hole in it like a shower) and an ice bucket and made a mess in the bathroom, cleaning little piggies, every single one! Then we took out all the books and read and read. It was perfect. Elena and Houston were back by 10pm when I was really starting to fade, so timing was ideal.

Today, I’m tired but doing okay. I didn’t get the big crash I was really worried about and I’m ready for the zoo. We will probably head over there about 10ish so that we can be heading home no later than 3pm and miss the worst of the traffic on the way home. And I will be using my walker at the zoo, which will save me again…thanks mommy and son.

This round has not been bad. My main complaints are that my feet hurt and I get sores and they don’t heal. If you scratch yourself, you would clean it up and a few days later the scratch would be gone, if I get a scratch or cut it stays and gets worse and worse because it just can’t heal. My platelets are just too low and my body can’t heal itself. Which is very annoying. I have a sore on my knuckle which I keep hitting over and over and over and every time I take off the skin and it bleeds. Just irritating, not life threatening. My mouth is still store and I have to watch what I eat, not only because it hurts, but lest I cut my mouth, it will never heal! My feet and hands are sore, which is weird and I’m not sure the cause for that odd side affect.

Enough complaints. All in all, amazing, wonderful, fabulous. Memories were made that I will keep in my heart and soul forever. The sight of my grandson in the ocean, the vision of that little boy walking in the distance on his father’s shoulders, sun and surf sparkling in the background. The feel of his little hand in mine, grainy with sand. The tug of my heart as I gaze at those blonde locks of hair and he looks in my eyes and calls me Nana. The most beautiful word in the world.

Friday, July 9, 2010

Dose One - second half

Well, the second half of dose one is in and now I wait and see how I feel. So far so good. I was tired yesterday, which is normal, since they always give Benadryl to stave off any potential allergic reactions and leaves me terribly sleepy. I dozed awhile at the cancer center and again yesterday afternoon and then tried to get to bed early, but again had a hard time sleeping. I am contemplating taking an additional ambien, but I hate to have to take more then one, what if I never wake up? I have my issues about sleeping anyway and to take an additional pill just is too much, so I lay there and listen to the sounds of the night and think of what I need to do the following day and about my friends and my family. About how all this works within my life and what my future holds for me. Eventually I doze back off and when the alarm goes off…well let’s just say I’m sleeping find by then!!

I am once again, waiting for the cable people. It has not been a stellar Charter Communications week. I have been waiting for charter every day for one issue or another. They really got a piece off my mind yesterday when we waited all day, made sure someone was here all day, even during my chemotherapy, and no one showed up! I won’t go through the whole story, but Supervisor Steve from North Caroline got the entire story from start to finish and received the full ire of my frustration. I apologized ahead of time and told him, I am one very very dissatisfied customer and you are going to get to hear why and please do not take it personally, I know this is not your fault, it is your company’s fault, but he had to hear from start to finish to truly understand why I was so frustrated. I have to say, Supervisor Steve from North Carolina, you did good. He listened attentively and completely all the way through and then he did everything he could to solve the problem. So today, between 8-12… let’s see if Steve can make it happen.

Like I said, chemotherapy was uneventful except for the fact that my platelets are below where they should be to allow me to have chemo. They are supposed to be at a minimum of 100 and they are at 89. But we went ahead with it fully aware that we need to watch my platelets closely and may have to delay the next round by a week or so. That is okay. The rest of my counts are holding steady. I’m a little anemic, but my immune system seems to be staying strong which is incredible news. No neutropenic shots yet!! Yea!! Means I can continue to have visitors, continue to go out to eat and shop and be social.

So Deana, my friend from Hermiston stopped by to brighten my day yesterday. Always such a joy to visit with Deana. You might remember her, she is the one we thought had ovarian cancer about a year ago and a miracle happened and she ended up being cancer free! She continues to be free from this heinous disease and one of my greatest supporters and prayer warriors.

Donna, Janice and I wanted to go see Sex and the City II last night but it isn’t in the movies anymore! Bummer! I normally feel fine the first day of chemo (except with the Ixempra, of course) so it’s a nice night to do something. There are so many anti-whatever meds in me that I’m pretty safe going out. So we went to PF Changs instead which was very enjoyable. Then I came home, complained to Steve, watched a movie (Blindside) and went to bed.

I did get to talk to Peyton yesterday and she is having a wonderful time in Canada. We talked for about 45 minutes, thank goodness I added the international plan which makes the cost .20 per minute, so its not too bad to talk for that long. She really seemed to need to talk and hear what was happening and how I was doing and how the chemo was going and reconnect with her world down here. And reconnect we did, I do love and miss that girl, it simply isn’t the same here without her and she feels the same way. And I think that is hard when you are 18. You want to be running away from your home and to your new life, your new found freedom and adulthood, but she is still so firmly locked here with me, which I guess, isn’t a bad thing either. We just need each other right now. We are the anchors in each other’s storms, and an anchor is a great thing to have when life is tossing you willy nilly across the sea. She also took the time to call her grandparents, she is missing them also. If I am her anchor, they are her lifeline. She knows with unwavering certainty that they will never let go of that lifeline and if the anchor fails, they will pull her in without hesitation. She will be safe. Safe is an even better place to be. So for .20 per minute, she can talk all she wants. My baby is safe and having a wonderful time in Canada.

My goal today is to run a few errands with my mother. She is feeling better and wants to get out of the house for awhile and I’m feeling up to it, so a mommy-daughter morning is planned with an outing to Heritage Home for their sidewalk sale, Kohls, Cantor Diamond, Bed Bath and Beyond and if we are up to it…a quick trip to the mall. The last few stops are all only if mom’s leg holds up. But her physical therapist said that getting out and moving is a good thing and mom and I really haven’t had any alone time together so I am really looking forward to this outing. Mom and daughter time is always special in my world.

Tonight I have a date with Mike and I am so excited. I am wearing a wig and makeup and everything just like a normal woman going out on the town with her wonderful man. We are having dinner with out good friends Tina and Gary, so a great time will be had with my love on my arm and hopefully, he’ll be proud to have me there. I will do all I can to look beautiful. Its tough, but beauty is a state of mind and I’ll radiate it from the inside out! Its been so long, I am sure I’ll remember though!

Tomorrow, I’m off to the coast with Jessie. I can’t wait. I am concerned about being tired, but Houston and Elena both know that if I get too tired and have to stop and nap, then its okay. My plan is to ride in the back seat with Jessie and watch DVD’s the entire time. My dad has a portable DVD player that draws off a cigarette lighter in the car, so that will be perfect. Saturday is Elena’s birthday, so we are going to have a fire at the beach and roast weenies and make smores over a campfire. Sunday we are going to take Jessie up to the aquarium in Newport then on Monday we are going to drive to Portland and take him to the Zoo. Monday night, Jessie and I are staying in the room to watch movies and order room service so that Houston and Elena can have a romantic evening out and then we come home on Tuesday. It should be an awesome time. I can’t wait to see my grandson see the vastness of the ocean. The anticipation of his reaction makes me smile and bubbly to overflowing! Its going to be a moment to remember. A moment forever.

All for now. I don’t know if I have internet access at the beach, so if not, my faithful friends, please keep me high on the prayer list. The chemo is in, let it do its job with a minimal amount of side effects.

Thursday, July 8, 2010

Round One Continues.

I fell last night. Going UP the stairs. It wasn’t a hard fall, but was a fall nonetheless and was enough to scare me a little. I was carrying a candle, unlit, thank God, and it flew across the hallway coming to rest at least 5 feet away by my bedroom door. When I started falling it all went into slo-mo and I was outside by body watching myself fall. My right hand, normally on the railing was trying to figure out how let go off the candle without it breaking and my left hand was worthlessly cartwheeling through the air trying to find something, anything, to grab on to. Meanwhile my momentum was carrying me forward and down, crashing in a heap at the top of the stairs. When it was all over I sat there for a few minutes and contemplated what happened. How did I feel about this? What is funny? Sort of. What is sad? Yeah. Pathetic. Definitely. So I sat there at the top of my stairs, with my dog Sophie, and we talked about my predicament and what caused it and how do I keep this from happening again and…is that dirt on my wall? Yup. Its dirt. Amazing the things one sees when they sit in a place in the house not normally reserved for relaxation.

Sophie and I decided that I simply rushed up the stairs with no regard for my health and my physical status. I wanted to run a new candle to the bathroom to replace the old one and was excited about the new scent, ocean breeze, in preparation for the trip to the coast this weekend. So I grabbed the candle and quickly hoofed it up the stairs. My right hand, normally reserved for the railing and balance, held the candle, my left hand, useless in most circumstances because I am so solely right handed, remained empty. I don’t pick my feet up well, I know that, I have known that for months and you know what, nothing has changed in that department, I still don’t pick up my feet well, so in my haste to rush up the stairs, big surprise, my right foot caught near the top of the stairs and I fell, face first, into the floor.

Oh well. No biggie. I wasn’t hurt. But the reality of it hurt. It hurt inside my heart, into my spirit. I keep forgetting that I am a cancer patient and that my life is changed drastically. I can no longer run up the stairs and run back down. I need to be careful, step with purpose, hold railings, watch for balance at each step. I have to behave cautiously when I traverse about this world and I really hate that. I am so much more of a wing it and see what happens type of woman. I want my old life and balance back more that I can say.

Do you know that I used to bet bartenders a pitcher of beer that I could stand in their bar and do a standing back flip? Quite a thing, eh? I know there are many people who have way more fun and illustrious stories in their past but this one I think shows how agile and crazy fun I have been my whole like. I could stand and just do a back flip. On command. Anytime. Anywhere. Now, that ability is gone with our without the cancer, I am pushing 50 these days, but it still reminds me of what I used to be able to do. I could easily run up and down the stairs of my tri-level house. I didn’t need a railing or a cane to get up and down off my patio. I didn’t use handicapped parking, or limp slowly through a store. I strode, vibrant and strong, with purpose and determination. Those days are gone and I pray that someday they will be back, but its not today, and its not tomorrow, so I’m hoping for maybe next week. :-)

I see improvement, I really do. A LOT of improvement. I am remembering things so much better. I can read fairly well again, and I am remembering appointments and things I need to do. I am still writing everything down, mind you, but the memory is getting significantly better.

And I am walking better, really. If you compare me to what I could do on May 19, which was barely walk, I am a marathon runner. I am SO much better, I just have a long way to go and little things like this sometime take a huge emotional toll on me. It’s not a big deal that I fell, everyone falls, it was the realization that it was my own carelessness that caused my fall and I could have easily prevented it if I would continue to be vigilant and careful. So I vowed to be more careful when I walk. No more running up and down the stairs!

So I am preparing my day for the next dose of chemo. This is the second half of dose one. I feel pretty good going in so I have no doubt I’m going to sail through this round with no complications at all. I leave for the coast on Saturday with my kids and Jessie and I can’t wait. I know that God is going to watch over me; watch over us; and we will have an incredible time. Memories will be made, life and laughter will be shared. It will be a vacation worth remembering for all time.

I love you my prayer warriors. Pray for an easy, breezy, beautiful chemotherapy round.

Wednesday, July 7, 2010

Maybe a Wig??

I totally overslept today. I had plans to get up by 7am so I could walk the dogs before it got too hot and I remember the alarm going off at 7am, but the next thing I knew it was 9am and I was still sleeping soundly. I had a hard time getting to sleep last night, seems every time I would doze off another firework would explode and Kyra would creep closer to me. I don’t think she could have slept any nearer to me!! I like the 4th of July, but I really hate the amateur firework pyrotechnics who seem to think the holiday should live on and on for weeks. They wreak havoc on my dog’s nervous systems for at least a week prior and it seems like weeks following the holiday. So, by the time I finally got to sleep last night I believe it was well after midnight and my body must have needed the extra rest. Although my counts were good last week, they were on their way down with the “nadir” (lowest point) being on day 10, which was Monday, and if you remember, that was the day that I really cratered and found myself almost unable to move during the afternoon. I am slowing working my way back out of that hole and today only feel like I weigh 700 pounds instead of 1000. So that must be an improvement! I have chemo tomorrow, so I’ll get my blood checked again this afternoon, but I am not anticipating any problems. I am sure we will be going forward with chemo, as scheduled.

I had a free facial at the Cancer Center yesterday. Every Tuesday, Sunny, former owner of Nuveau, gives free facials to cancer patients, and in all the years that I have been a patient, I have never taken advantage of it. Can you believe it?! It was amazing, relaxing, refreshing and totally healing. That woman has a therapeutic, curing touch and a loving healing heart. A stage 4 colon cancer survivor herself, she knows the right touch, the perfect words to say; she understands the way that a woman with cancer is feeling. It was a well spent hour and I plan on scheduling another one next month. She said that she will give me a free facial every month while I’m in treatment. Is that a great deal or what; like I always say, there has to be some perks to having brain tumors.

I ran into someone I know yesterday at the cancer center who is currently undergoing treatment and she was wearing a wig and I had no idea it was a wig. It looked completely natural and I thought she has just not lost her hair yet! It was crazy! So, after my facial I decided to look at the wigs and you know what, I think I found one that might work. So I brought it home to hold on to it and am trying to make an appointment with Frankie who styles wigs for woman undergoing cancer treatment.

Before bed last night, I sat down at my vanity and turned on the makeup light and put the stylish nylon stocking over my almost bald head. Then I put on the short reddish brown wig. Adjusted here and there and looked in the mirror. And cried. I looked like me again, except with a really round face. I looked like Patty. Like the woman I used to be over a year ago with short sassy hair tinted red. I looked like a woman again, not a cancer patient. And I cried and then I cried some more. Oh, to go out on a date or something and just be a woman out with her man, or a mother out with her children, or a girlfriend out with her gal pals. Just to be a woman out on the town, not receive the pity looks from people who just see an unfortunate woman with an incurable disease. A person that no one gives a second glance to, except to stare at her fabulous shoes. A regular person just like you.

So I have a call into Frankie and I am hoping she can get me in for a style and maybe next time you see me, you won’t recognize me, because I’ll be the one who looks so absolutely normal that your gaze will sweep on by, except for the amazing shoes, of course. I will be wearing magnificient shoes, even if they aren't heels! Wait and see!!!

Tuesday, July 6, 2010

Sorta in a Funk.

I am totally exhausted. I just can’t seem to find the energy to do anything but sit in a chair or lay on the couch, reading and dozing. It’s awful and it put me in a huge funk yesterday. There were things I wanted to get done with my daughter before she left town and I wanted the energy to do them and enjoy them…well I did do and enjoy, but the energy level wasn’t there.

Peyton is on her way to Canada and yesterday was our last day together for a few weeks so we went and got pedicures (she got her nails done too) which was wonderful and relaxing. I enjoy my time with her no matter what we do. She finally requested my packing assistance late last night and we got her easily under the 50 pound limit so she has extra room to bring her wares home from Canada. I believe she was 42 pounds on the way out this morning. Yea! If she goes over 50 on the way home, I told her ship it or carry it on! Its $90 for 51 pounds. Yikes!! So she is off to her adventure and I am home to rest, relax and heal.

I have phone and internet sometimes. Gotta love Charter. I added a home phone about a year ago because it was cheaper to “bundle” and the phone has had intermittent service for the entire year. Well I finally got tired of it not working so I had them come and “fix” it. Well…we find out that they should have replaced my box when they installed the phone and the reason that my service doesn’t work is my box is ancient which also affects my internet. So the phone guy was here on Thursday, “fixed” the phone and I have had phone and internet outages on a regular basis ever since!!! It’s been great. BUT, I know when the phone works…the solicitors call. It’s amazing. I swear, as soon as the phone comes on, it rings and it is a phone solicitor. I just put myself on the “do not call registry” which I know takes a while, so in the meantime, its how I know if my phone works. Pretty funny, eh? So posting blogs, checking email, doing Facebook…all that stuff, well I do it when I can. As of yesterday (Monday) I had no signal coming to the house, so Charter put in an “emergency” call and they are coming to “fix” the phone and internet this afternoon. But it will be a waste of time until the box gets replaced on Thursday, where they need access to the house all day, when I have Chemo. I guess my parents and my son get to sit at my house all day. So if anyone has a free day on Thursday with nothing to do they can come and babysit my house and dogs and hang out waiting for Charter to come and dig up my beautiful yard (they’d better not MESS anything up!!!) and give me a modern cable box.

Anyway, back to how I am feeling. Like I said, I got in quite a funk yesterday. I am SO tired; my body feels like it is made of lead. I am bloated and full of fluid from the steroids, which doesn’t help my attitude and the steroids are going to be tapering down over another month, which is good, but daunting. My memory seems to be continuing to improve, I feel like I am remembering things better. I was able to read a book yesterday, which is a huge deal; up to now I have not been able to track my mind enough to read a story, but yesterday I started on the new Janet Evanovitch, which I realize isn’t the most deep read, but at least I am reading and its making sense and I remember what happened in the last chapter when I start the next, and THAT is a huge deal.

I talked to Mike last night, cried about my predicament and my funk, and felt better (poor guy gets all the crap, doesn’t he?) and I realized that every day can’t be a good day, every day can’t be a perfect day; some days you’re the bird and some days, well, you are the window, and you just have to deal with it. So today, I will make it a better day. I will improve my attitude and my outlook. Its all about your perspective and mine was just not where it should be yesterday. Maybe it was the exhaustion, maybe it was Peyton leaving and my awareness of how much I will miss her (even if I say I won’t) or maybe a combination of all, but today, I’m making it a better day, and if I don’t, whomever is with me, you have my permission to slap me upside the head!

Saturday, July 3, 2010

Better Every Day

I slept a lot last night. Finally. I was so exhausted yesterday. I was pretty busy during my day starting at 8:30am with blood work, then a cable repairman who fixed my home phone (it took over an hour and doesn’t work again today, which is a whole ‘nother story), then Nancy stopped by, then my parents, then we walked the dogs, then Peyton came home and she wanted to go to the store, then the travel agent called and Peyton and I got our trip to the Bahamas booked, I returned a few other phone calls and texts to doctors and friends, then Houston came by with Jessie, then Cindy stopped by with dinner and then Wendy stopped by to say hi… See…. It was awesome…And overwhelming.

My brain still does not process a lot of activity well. I am easily inundated with stimulus and for some reason it stresses me out and leaves me feeling confused and worn out. I have to admit it has improved remarkably over the last few weeks. It was only a few days ago I was in tears because too many people were talking at the same time and I couldn’t process it all at once. This is absolutely nuts coming from someone who could multi-task 25 things at the same time, while taking minutes and talking on the phone! But slowly, I see my cognitive abilities coming back. I was excited that I remembered that I have appointments next week when the reminder calls came in yesterday. I actually completed two crossword puzzles without looking at the key on either one!! Now these are not NY Times puzzles, believe me, they are “easy Monday morning puzzles” but hey, they are good enough for me right now and they gave me a great sense of accomplishment. I was able to talk on the phone with the travel agent and make decisions and not get confused. I am remembering to take my medicine before my phone alarm goes off. I see the little things starting to come back, and that gives me a lot of hope. I was going to look at signing up for some sort of on-line creative writing class, but its getting pretty late into the summer, so I think I’ll wait until the fall and keep doing what I’m doing, which is working on my writing, both typing and by hand, crossword puzzles, remembering lists and routines, talking to people, having visitors. And thank you thank you my visitors, just be patient with me when I get a little confused, edgy or overwhelmed…ITS NOT YOU…its me. My plans to improve my cognitive abilities seem to be working, so that’s what I’m doing every day.

Oh yeah, and fight this stupid stinking cancer with every fiber of my being.

I had my blood work yesterday and it was pretty darn close to stellar. I am NOT immunocompromised, I am not anemic, my liver and kidneys are functioning great. The only thing is that my platelets are slightly lowered, but only to 99, and you need 100 to get chemo, so that is no big deal. I’ll have a 100 by next Thursday for my next dose, no problem. I knew it was going to be okay with this chemo and it is; I’m just plugging along through! You all know I am a dreamer and full of hope; but I am also a realist and I have done this song and dance before and I am under no illusions that every round is going to be as easy as the first. I had not had chemo since April 1st. My body had been beat up pretty good with the radiation, but not like what chemo does to the body. So I was pretty healthy going in. I know each dose, just like the Carbo/Gemzar that landed me in the hospital in December, gets a little tougher to deal with each time it goes it as the drug accumulate in your body; so I am aware each dose is a new opportunity to see what will happen. But for today. For now. I’m Golden.

I assume you caught the “trip to the Bahamas” statement earlier. Yeah, for those of you who don’t know, it’s true. Because of my medical condition and the likelihood of an untimely death, our life insurance policy has a clause called an “accelerated benefit” which allows an insured to cash out a portion of their policy if the indication is that they will die within two years. Well, when these brain tumors showed up, the insurance company began to see things a little differently and allowed me to cash out some of my life insurance. I paid off some bills and gave an advance on my life insurance to each of my children to do with as they wish while I’m still alive. It was a wonderful rewarding experience. Not many of us get to see the benefits of our life insurance while we are still here alive, enjoying the smile on their face.

My son bought a car. He really needed one and it has been a godsend to him. Peyton wanted to do a trip with her mama. Just me and her. Originally we talked about Europe. But that was before the chemo. Once I started on chemo she knew there was no way I could trek through Europe for 10 days and stay healthy. So, God Bless My Daughter, she switched us to Atlantas Bahamas. So, my daughter will be taking her mama to Atlantis Bahamas for 10 days with her portion of the life insurance. Pretty cool huh. I am so excited, humbled, heartwarmed…emotions and feelings that I can’t even put into words. These 10 days with my beautiful adult daughter will be some of the greatest days of my life, that I will treasure every moment I’m alive and way beyond. They are without measure. I can’t wait.

Currently my chemo is being split up into half on day one and half on day fifteen. I am going to talk to them next week that for the next round, take 100% on day one and be really sick for 7-10 days and then by the time I go to the Bahamas, I’ll be feeling great(ish). Maybe? It’s an idea!! The trip will delay my third round by one week, which is no big deal. Gosh, I can’t wait. Can you tell I can’t wait? I AM SO EXCITED!!! I am going to spend 10 days in the Bahamas with my daughter!

So Life is Good. Things are going well. I am plugging along nicely in my beautifully reconditioned backyard which I adore. I understand that planning for my upcoming fundraiser is underway and am so looking forward to what Sherri Manzanares has in store for me. If you are not aware of the fundraiser…the details I have now is that she is doing a nice event for me at Ava Wine Bar on 395 in Kennewick, Sunday, August 1, 2010 from 3-7. Eddy Manzanares (CafĂ©’ Blanco) will be playing music (they are awesome) and there will be wine and food with a minimum cost of $25 or something. Then she will have all sorts of silent (maybe live too, I don’t know) auction items for you to bid on. The funds that are raised will be going into an account to pay for health insurance costs, prescriptions costs, uncovered medical bills whatever the organizer deems. Pretty incredible and overwhelming to think how much people want to help. This cancer has been one of the most humbling experiences of my life. If you want more information, or to donate, you can contact Sherri on her Facebook at Sherri Beatte Manzanares, 509-205-5698. I am super excited for this event, I hope I can look fabulous… ok… maybe I’ll still have my Mohawk??? We can only hope!

Love you to all. Go out and make it a great day. Smile at someone who least expects it. Blow bubbles from your car at a stoplight. Laugh. Its your day. All yours.

Friday, July 2, 2010

Eybrows...going going going....

I woke up this morning and half my left eyebrow was gone. Just vanished. Weird. My daughter told me the other day it was starting to fall out, but now, a good section of it is just missing, probably left on my pillow. It looks rather odd, so I hope the rest falls out sooner rather than later!

It is a cool morning today out on the patio. The breeze is gently blowing the wind chimes and I have my warm fuzzy robe wrapped tightly about me. I hit a wall yesterday and found myself simply unable to move. Durashine came to clean the house, and I took the dogs for a walk with my father and somewhere in there my body just simply gave out. I was really dizzy when I was at my parent’s house before the dog walking activities but I went anyway and while we were walking I could feel my body slowing becoming fatigued. We made the remainder of the walk my dad took me back to his house and I just couldn’t get home fast enough. I headed straight for the couch, turned the TV on for company and shut my eyes. The next thing I remember is that annoying Olson twin talking in a midget voice about peanut butter and jelly and knowing that if I didn’t change the channel my head would explode over the irritation of that voice! Who knew that Full House could grate on the nerves so badly! So, I finally arose, changed the channel (Americas Next Top Model much much better) and took the idea for a PBJ to heart. I was able to eat most of the sandwich before my mouth just couldn’t handle the bread anymore, so I guess the show was not an entire loss, it gave me a lunch idea.

My mouth sores continue to plague me. Everything seems to hurt my mouth and I can’t use toothpaste anymore. I am now using baking soda and eating only things that aren’t spicy and that are soft and non-irritating to my mouth, gums, tongue and teeth. I really need to have my teeth checked out, but the sensitivity is so great, I am not sure how I could even handle a dentist. But it’s been more than a year and I am concerned about the health of my teeth. Do you know that radiation can make your teeth fall out!? ACK!! So if anyone out there knows a really really good dentist who has handled cancer patients, please pass on a referral. I need a dentist who understands the special needs and side effects of my disease.

I had a hard time moving yet I had an appointment with the attorney at 1pm, so move I did, albeit very slowly. Mike gathered all the things that I needed and off we went to sign the legal documents that cover me for all eventualities from disability to death. I hope to not have to use any of them any time soon, and as my attorney said, “Just because you have these doesn’t mean you have to use them!” There is still a certain amount of comfort in knowing that everything is set out as I wish. I know who is making decisions for me in the event that I cannot and we have discussed at length what those decisions should be. The last step now is to sit down with my children and review the Last Will and Testament with them so there are no surprises should something happen. Let’s get this straight right now though…I DON’T PLAN ON DYING ANYTIME SOON. Unless, there is a giant bus with my name on it headed straight for me. This cancer is NOT going to get me. Of that, I am confident. Not anytime soon at least. I plan on being here for awhile, but this is something that we should all have done, regardless of our health status. Our children and our heirs should know that things are taken care of for them and what happens to them should we pass over to the beautiful other side. I feel good getting this done. It is a definite load off my heart and off my mind.

Sleep still plagues me. I sleep for a few hours if I taking sleeping pills; but I find myself not wanting to sleep. I know my body needs it desperately, but there is this little voice in the back of my head which keeps me awake at night, thinking of all the things that I want to do and sometimes I just get overwhelmed with it all. I was looking at the pictures of Mike finishing the Ironman yesterday and I succumbed to a horrid sobbing fit of tears. I DO NOT WANT TO DIE, I sobbed. I want to live long enough to grow old with that Ironman. “I WANT TO LIVE, DO YOU HEAR ME!” I shouted at God, and He listened. I know He did, but His answers fall silent these days and I just don’t know how long I get to be here on this earth; so I have decided that I will live despite what anyone says, God or otherwise. I am just going to beat the odds.

So I arise early everyday and lay in bed and just listen to the birds and the winds and all the sounds that I love that are so familiar to me and I wonder…is this my life now? This can’t be all, there has to be more. So I start planning my day, contacting friends and making arrangements for people to stop by and see me. I need people, I need to hear voices and see faces and watch smiles and heed the sound of laughter in my house. I need the comfort of my support system around me, cheering me on, hoping and praying for me, making me smile, making me laugh, making me live this wonderful life that destiny has chosen for me.

So for now, this IS my life. And I will live it. The best that I can with all of you beside me, holding my hand.

Thursday, July 1, 2010

Letting Go

How do you mend a relationship? It is so difficult and emotionally exhausting; heartbreaking and sometimes impossible, but I know it’s something that we all struggle with and it’s something that we all will have to do.

People we love disappoint us. They hurt us. They make decisions that don’t match our values or beliefs, even if we think that they should. Because no matter how alike we believe we are and no matter how much we assume people see and think the same way as we do, they don’t. Each person has their own unique set of views, values and beliefs and they make choices based on those beliefs. And normally, there is nothing we can do about those choices. Sometimes, we don’t like them, in fact, we might despise them. And when we do, it is important to take a step back and look within ourselves and see, why? Why am I sacrificing an important relationship in my life over a choice that was made that does not affect me directly? Why is their decision reeking havoc in my life, causing me turmoil and strife? That’s pretty easy to answer, because we love them. It’s as simple and complicated as that. We love them. We want what is best for those we love, even if we don’t always know what that is. It might be exactly what they are doing? It might not. But that is where love, friendship and family come in. We are there anyway. Despite the bad choices, despite the words which may or may not have been exchanged, we love them. We love them through all. And we probably are going to have to sacrifice a little on the journey back to healing. We may have to give up something that we hoped for, but it is part of the human spirit to let go. We must let go of those we love if we have any hope of them becoming the people that we might want them to be. And then we have to take the next huge step and realize, that they may never be the person we dreamed of them being; they may never meet with our “expectations” or may never fulfill the hopes and visions that we had for them. That doesn’t make them any less lovable or worthy of our love, it just makes them human. And haven’t we all made bad choices; that sometimes turned out to be good ones; and some choices that didn’t. And I hope each one of us had someone there to help pick up the pieces when it was all over and the chips had fallen and we realized how poor choices affect our lives.

But through it all we must love. We must love each other and sacrifice for each other. It may be in words or deeds or acts of kindness when kindness is the last thing we want to give, but it is all that is left. It may go against everything that we had wanted, but if the relationship is worth saving, and the person is worth holding on to, then make the effort. Reach out no matter the cost, no matter the hurt, no matter the turmoil. For in the end there will be healing. Let go of the disagreement, let them make their own choices, let them revel in their life, good or bad, it’s their life, not yours. Let them live it. Just as you are living yours.

As for me, I want to live with no boundaries, no rules. I want to wear a crazy pink hat with striped leg warmers and silver dancing shoes. I want to howl at a full moon and purr at the crescent and make love under the dancing stars. I want to be free from society norms and rules of engagement and civilized expectations. I want to dance free like the northern lights and run wild like a wildebeest. I want to awake each morning with a zest and zeal for life which is unsurpassed in this world. I want to live life so abundantly that people gravitate towards this life, this world I have created. A unique and open place of yet uncultivated style, feral hope, riotous happiness, untamed joy, uncontrollable peace, fierce beauty, outrageous laughter and lunatic love. A place worthy of all who hope, of all who dream of a better world. A better place to be. Come with me. Grab your crown and let’s make a new kingdom which shines brighter than all the rest. I have extras crowns if you need one.