Saturday, January 29, 2011
I am feeling pretty good this week. I got alot done today, the regular stuff, shopping and cleaning. I am trying to go through all my stuff and get things sorted and in the trash or off to Goodwill. The less stuff I have the more room I'll have in my house and the less belongings that my family has to go through after I'm gone. Once I have the house organized and everything in its place I plan on working on photos. I have boxes and boxes of photos and I'd like to start with the most recent events (Christmas, Bahamas, Oregon Coast) and work my way back. My pictures go back 40 years to when I was growing up. Its a huge job, but I don't have a job, so I just have time. So I work on my blog, dabble in my book and make photo albums.
I am praying that I keep climbing the ladder towards feeling good the rest of the week. Next week when I get to the top and fall down into chemo, I just hope there are arms to catch me.
Friday, January 28, 2011
I felt so bad for Peyton last night. She is feeling better but is hungry and wants so badly to eat something substantial, but with the holes in her mouth and the tenderness in her jaw she just can't chew anything. She was so sore and depressed last night and I finally got her to go to the store with me and we got cake (I know, healthy, huh) and the stuff to make crescent roll pizzas. They went down well and she was much happier after having food. She saw the surgeon yesterday and he indicated that she is healing up well, she just has to make sure to clean out the holes regularly to keep the food out and her surgical sites clean. Apparently she did have some food that had gotten stuck in there so he gave her a syringe to clean them out after every meal. I keep reminding her that her tosilectomy last year was worse, but she was on so many painkillers she vaguely remembers the ordeal. She has been off painkillers since Saturday, so she is fully aware she is hungry and sore! Its hard to be a helpless mother; so disheartening to not be able to do anything to help your child.
I just take it one day at a time. Maybe once I am off the neupogen shots my body will start feeling a little more normal.
Thursday, January 27, 2011
Peyton will go see the oral surgeon today and get a followup check on how she is healing up. She seems to be doing well but is missing real food. She is tired of pudding and mac n' cheese and is ready to have something that has to be chewed, but her jaw is still too sore and doesn't have the okay for solid food from the doctor yet. Hopefully she is healing up and real food is on the close horizon! She had a big test today that she has been craming for over the last few days and I am hoping that it went well. She has worked really hard to learn the information.
I have a shot today too, so I think it will be a down afternoon and I'll take the opportunity to rest and read and give my body a break after its hard work yesterday. Tomorrow, I'll be back up and around. I need to learn a little moderation.
Tuesday, January 25, 2011
To read the full article the link is below.
I am feeling pretty puny these days with chemo in yesterday. But I could be worse so I take it as a good day that I can get up and around.
I just heard that a good friend and colleague, Jim Morasch, was in a serious car accident this morning. I talked to a mutual friend and he is in critical condition up in Seattle at Harborview. My understanding is that right now it is touch and go, his condition is very serious. Puts my disease in perspective. At least I am still here, able to enjoy my friends and family. I may be fighting for my life, but I know and see my foe. My friend Jim is fighting on so many fronts that we just must pray for God to heal his body. So a prayer in his direction would be much appreciated.
Peyton is healing up nicely and is working and going to school and starting to eat a little better. She is studying for a big test coming up on Thursday so has cloistered herself away in her room, only coming out for sustenence. I am proud she is working so hard.
Lots of things to pray for, but God is faithful and true and will not leave us or forsake us. He is with us no matter what the circumstance. Keep the faith in your heart and soul.
Sunday, January 23, 2011
I am tired but hanging in there. I have chemo tomorrow and am ready to go. I am over the nausea and able to eat and I know they are going to be thrilled at my weight gain, even if I'm not! We work so hard after 40 to lose weight, I finally do and the doctors want me to gain it all back. The injustice! But I understand, my care team just wants to make sure I'm taking in enough calories for my body to heal.
I went to church this morning and Monte's message was wonderful. He spoke about God never giving up on us even when we give up on ourselves or each other. God is faithful and will never leave us out on a limb. We have His love and support even if we can't feel it at the time and feel abandoned. That gives me hope for tomorrow, no matter how difficult life becomes, God is not giving up on me, so I'm not giving up on me either.
Saturday, January 22, 2011
I sort of melted down last night. I was so tired and Peyton was so sick and there was just nothing I could do. So I called my mom and just cried, I know she knows how I feel, she probably feels like this with me most of the time. I know I get my chemo and I get so sick and there is just nothing she can do, and as a mother, we want to take away the pain and the sickness and just make our children feel better. I was just so relieved to see Peyton turn the corner and start feeling well. That was such a relief.
I slept pretty good last night, one ear listening for Peyton the other closed to deep sleep. She made it through the night without pain medication, which is great and today she is more sore than hurting. At least this is a one-time thing. Once those wisdom teeth are out, they are out, never has to be done again. She got to keep the top two teeth, the bottom ones had to be broken to get out. So that is why she is so swollen on the bottom and not the top. A few more days and she will start getting back to normal. Wisdom teeth, its like a rite of passage to adulthood.
I am hanging in there, I just wish I could take away her pain, her discomfort. It just breaks my heart. I am getting tired, but that's a mom's job, to take care of their children, no matter how hard it is. I'll keep you posted.
Wednesday, January 19, 2011
Peyton is having her wisdom teeth out tomorrow and I am scared for her and ask for your fervent prayers. She is very anxiety-ridden when it comes to medical or dental procedures and we have to give her ativan (anti-anxiety medication) for her to go to the dentist. They are going to put her under anesthesia but in order to do that she has to have an IV put in, and therein lies the problem. She can't take nitrous oxide to calm her down, it makes her throw up, and they won't let her take ativan because it may negatively react to the anesthesia. So, that means she has to get the IV with plain old bravery. We have talked about it and I think if they can get her on the first try, we should be okay, but if they don't, we're in trouble because I don't think they will let them try a second time. But these guys do this all the time, so they should be pros and should knock it out first try. So please pray for a peace and calmness for my daughter and a quick and painless recovery. The first few days will be the hardest, then I think she should recover relatively quickly. Her mouth is really hurting so she is ready to get them out, its just the process that scares her to death. I hate that she has to go through this. I know it is almost a rite of passage into adulthood, most people (including me) have had to had their wisdom teeth out and survived, I just hate to see my little girl hurting. I know, its a mom thing.
I was supposed to see the physical therapist tomorrow but had to cancel it so I could be there to take care of Peyton and my lymphedema is really giving me fits. My arm is so swollen it aches. I am wearing my sleeve during the day and my reid sleeve at night just like I am supposed to but I really need a therapist to work on it. I have an appointment next week, I can't wait.
I have treatment on Monday so I am nearing the end of this cycle and starting to feel so much better. I have more energy and my bones are not aching near as much as before. Which is all good, I'll have everything to pour into the care of Peyton over the weekend as she heals. She has spend the last 18 months taking care of me, its my turn to take care of her. I just hope she can get through it without an anxiety attacks. Like I said, pray for her please. I'll write and let you know how it goes!
Sunday, January 16, 2011
It was uneventful flying in on Friday, the gal I was meeting, Deb Mumma, was delayed on her flight from the east coast so I hung around for about two hours before she arrived. That was okay, I just sat and did crossword puzzles and waited. I knew once she was there we were gonna get dropped off downtown and my energy would be put to the test, so I was in no hurry. She got there about 11:20am and we recognized each other immediately, which is funny since all we ever did was email each other. We were very close in age and story and hit it off right away. We caught our ride and headed to "downtown" Park City.
If you have never been to Salt Lake or Park City in the winter, you are missing out. It is absolutely gorgeous. We enjoyed the ride to Park City and after some confusion as to where we were storing our luggage, we were finally strolling the streets of downtown looking for a place to have lunch. We found a nice little place that overlooked the street so we could people watch while we ate a leisurely lunch. After lunch we walked down the hall and found a polygymist shop!! It was crazy! It was an entire store devoted to all things polygymist, t-shirts, hats, mugs, etc. I have to say it cracked us up. Unfortunately I didn't have my camera, but Deb did and she took some pictures. I'll share them with you when she sends them to me. A polygymist shop, never thought I'd see that!!
Once we got to the house I took a nap for about 30 minutes before I joined the group. If I didn't get some rest I was never going to be able to participate in any sharing, so I powernapped and then joined the group and met the rest of the woman. We were all over 30, most in our 40's and all currently in some sort of treatment for metastatic breast cancer. We shared the gap in support groups that most are for breast cancer, but metastatic breast cancer is a whole 'nether beast. If you are Stage 1, 2 or 3 your odds of overcoming are pretty good, once you hit MBC you are dealing with a chronic lifelong disease that is never going away. Your treatment may ebb and wain, but you will always be fighting the battle. MBC just doesn't go away. It was so enlightening to hear these woman's stories, their battles, their thoughts about their disease and their plans for the future. We shared, we laughed, we cried and stayed up late into the evening holding hands and hearts.
Saturday nearly all of us slept in until about 8 then sat around and drank coffee most the morning. I think a few might have gone snow shoeing, the weather was lovely and there were no planned activities. We were supposed to have lunch at 11am then spend some time downtown before coming back for facials and massages, but the lunch service was terrible and we didn't get done until after 1:30. So half of us headed back to start being pampered and the rest stayed downtown for awhile. When it was all said and done everyone had been pampered and then we were treated to one-on-one discussions with a local physician. It was very helpful, we could ask anything and the questions were in-depth and probing. Very interesting.
Chef Daniel whipped us up a fabulous dinner concoction, he truly earned the name "chef" and we were delighted with a dinner fit for a room of Queens complete with excellent wine. We shared and laughed some more and had a marvelously great time. After dinner we made journals. It was an amusing and enlightening way to spend our evening.
Sunday started with yoga and ended with all of us hugging and crying and sharing address, emails, facebooks, etc. and promising to get together again within the year. One of the gals won a malpractice lawsuit (they missed her cancer and in the interim it metastaticized) and has a huge house in Knoxville and wants all of us to come and visit. That just might happen.
It was a wonderful weekend. I gained 9 new sisters to lift me up and keep me going during this disease. These women get it. We all get it, we understand each other, our ups and downs and our will to survive. If I had to say one thing that we all have in common it is this most powerful urge to overcome the disease and live life. Even if we have to deal with some sort of treatment the rest of our lives, we are determined to survive, and if the energy of the weekend is any indicator, survive we will. I had a great time and am delighted that I went. It was time well spent and refilled my joy and hope meter to overflowing. Despite the challenges, I am still one lucky woman!
Thursday, January 13, 2011
I am excited to be spending time with these 10 brave women. We are all metastatic breast cancer survivors. Some of us are still in treatment, some of us have been out of treatment for awhile. I think it is an incredible opportunity to link hands and heart and praise where we are now...for we are all alive, despite the odds. I need this in my life right now. I need strong and loving hands wrapped around me nourishing me with the miracle of hope. That is my expectation for the weekend. That we will encourage and enlighten each other and lift one another up into the glorious blinding light that is hope.
People tell me all the time how brave I am; how courageous. I don't know how much truth there is to that, I just keep putting one foot in front of the other and believing that the sun will rise tomorrow and I'll still be here. Kicking for one more day. If that is courage, then I accept that, but I think any of us would do the same thing. None of us wants to die, we all have so much to live for, so given similar circumstances I believe that you too would have all the courage you need to keep going. For the human condition is to live and to love. What I have learned about courage is that it is more effective when infused with hope. It is easier to be brave when you have hope for a future.
So I am going on a journey in search of renewed hope. My hope meter is waning and needs to be recharged and I think this is just the group of ladies to do it. Pray for good weather, no delays and lots of joy interlaced with the beauty of hope.
Wednesday, January 12, 2011
So I turn my face upward and feel the light of God shine down on me and soak in His love and comfort. That is the only way I can keep my hope alive; trust in God to carry me when I can no longer walk, and my legs are feeling awful weak right now. I am counting on God to lift me up.
I am hoping that the retreat this weekend will be an experience of God's love and grace. I will be spending time with a small group of woman who have had or are currently going through metastatic breast cancer and they have felt the fear and hopelessness of this disease. I am praying they can help to lift me back up to the joy and optomism I have felt previously. I am determined to beat cancer and believe with all my heart that I can survive this; I just need to get over the hump of this latest news and remember all the gifts in my life. I am so incredibly blessed, I have an awesome family and circle of friends who show me so much love and support. I am leaning on you, my friends, and counting on you to keep Gods love shining through you. Together we can keep the hope alive.
Monday, January 10, 2011
It's a good news bad news sort of day. The results of the scans are in...(drum roll) and the winner is...The CT Scan! It shows all clear from cancer in my body including lungs, lymph nodes, heart, kidney, abdomen, etc. There is some leftover scar tissue, which is to be expected, but no mets. Awesome news.
The loser, The MRI. Not only did the tumors not go away but the one which is left increased slightly in size (3mm) and a new one (5mm) has appeared. Dr. Rado is cautious about panicking, since the increase is so minimal, the new spot is so small and mostly fascinating is there is no edema (swelling) associated with the tumors, which there usually is. But leave it to me to be different! I go from incredible swelling back at the beginning to no swelling now, when it should be. Strange. So, Dr. Rado wants to redo the MRI scan in 2 months and see what these two little critters have done and in the meantime continue the current chemo regimen. That includes continuing on the Abraxane, which is really for the body not the brain (it doesn't cross the blood-brain barrier) but since I am doing the other drugs I might as well continue this too just in case there are some hanger-oner cancer cells roaming about my body just waiting to make a comeback. So my standard therapy will continue over the next two months and then in early March we will redo the MRI and reexamine.
To say I am disappointed would be an understatement. I had suspicions that the tumor in my brain had not reduced at all and perhaps had grown. I can tell by my symptoms. They are not better or worse, just the same. I easily loose my balance and trip on my right leg, which sometimes forgets to pick itself up when I'm walking. Especially up and down stairs. I am waiting for the day when I crash on the stairs. I have fell going up the stairs quite a few times when I caught my right foot while it was lazy and didn't raise high enough to clear the step. I try to be very careful and hold the railing, but I just never know when I'll forget or maybe step and miss the railing. Its in my nature to hurry up and down those stairs and has been a real change of lifestyle to climb or descend the stairs with slow trepidation. I have misgivings about my stairs, and I don't want them to be my downfall (ha ha).
So I am slowly preparing for my trip to
So two more months of this cycle and then we are going to check the brain again. Hopefully the cells will show a response and this time, it will be for the good! I am truly ready to get this treatment over but have in some ways resigned myself that this is me, this is my new life and it will forever be about surviving cancer one day at a time. But if I think about it, that's really what we are all doing, surviving our lives one day at a time. Overcoming obstacles, leaping over hurdles, sprinting when the situation warrants it. But we are all survivors, every day we make it to lay our head on the pillow one more time, count it a success. You survived.
Wednesday, January 5, 2011
Peyton is back at school this week and her classes start at 6:50am, so she has early mornings every day. She is working three nights a week, so by Friday she is going to be pretty tired. She is enjoying most of her classes, but she has one teacher with a strong french accent and has a hard time understanding him. She said she tries to take alot of notes and is glad that he lectures from the textbook.
Jessie is going to come over and visit today and I can't wait to see him this afternoon! He always brightens my day and makes me smile and laugh. I need to laugh more, laughter is good for the soul and makes my days so much better. If I can laugh everyday, then the day is complete. It relieves pain, improves my mood and takes away any bad that may have happened. Any unpleasantness that may have occurred simply slips away, replaced by a lightness in my heart that lasts the rest of the day.
Find something to laugh about today. Real laughing, the kind that goes all the way down into your belly and rises up into the very core of your soul and makes tears run down your face. No matter what happens during your day, laughter will brighten your life and bring in some sunshine, even if the sun refuses to cooperate!
Tuesday, January 4, 2011
My CT and MRI are on Friday and I am cautiously optimistic. I am fairly certain that the tumor is still in my brain but I'd be happy to know that it hasn't grown and no additional tumors have shown up in my brain or anywhere else. I hope the contrast fluid goes down better this time. Last time I ended up only keeping down one dose. It was weird, I had never had a problem before drinking the contrast.
I am getting tired of winter already. This winter sure is cold. I don't remember a recent winter with so much moisture and cold, and there is no end in sight! I'm ready for spring, for warm air and bright sunshine. As much as I am enjoying my fireplace I would gladly turn it off for a nice day of sunshine.
I'm off to physical therapy to work on this persistent lymphedema. I am working on getting approval for a new type of machine that works like getting a lymph massage which could really help. Insurance has denied it, so we are appealing. My brother uses one for the lymphedema in his leg and it works great. It is used for one hour per day which is easy to do, watch TV for an hour and let the machine do its work.
Have a great day, keep smiling. As far as 2011, so far so good!
Sunday, January 2, 2011
Peyton won't go with me, she was really burned by a few different things that happened at various churches and a terrible incident that happened with Younglife that turned her off to organized religion. I don't blame her, it was very very non-christian behavior and I wouldn't want her to be involved with those type of incredibly judgemental people either. Not the type of people you want your daughter to emulate.
So, I'll contact Tina and see if there is a seat for me next to her and I'll try it out. It can't hurt and it might help my viewpoint as I move into the new year. I want to survive to 2012, and this just might help. I haven't really made any resolutions, per se, other than to survive and that requires little steps like taking better care of myself, keeping my attitude positive, eating right, exercising. The drugs alone aren't going to do it, especially if I listen to the FDA who is questioning the efficacy of two of my drugs. So, I must add all the other healing techniques I can to beat this disease.
Off to church. I'll sing, pray, raise my hands if so inclined and soak in all the love that God provides. I'll let it wash over me, filling my body and stimulating my soul. I believe in the power of our almighty Lord and the incredible force of prayer, let it rain down on me.
Saturday, January 1, 2011
My energy level seems to be increasing and I spent the better part of the day putting away decorations and taking down the tree. I stayed pretty busy until I joined my parents for a little football and snacks late in the afternoon. By the time I got home, the activity of the day had caught up with me and exhaustion had set in. I am going to do the best I can to stay up until at least 9pm, I sleep better if I stay up later. Otherwise I wake up at 5 or 6 in the morning and can't get back to sleep. So I thought, well, I'll blog, check email and watch a little NCIS marathon. I love NCIS.
I hope I continue to feel better. I would like to attack my basement which has become a catch all for anything we don't know what to do with. I have bags of stuff for Goodwill and things that probably need to just go to the dump. Peyton has cleaned out her closet and is taking some of her clothes to Plato's Closet and the rest will go to Goodwill. She has alot of nice clothes, so I hope someone can use them. I need to go through my clothes too, but now is not a good time since my weight has fluctuated so much I wouldn't know what size to keep and which size to get rid of! I certainly hope I never need the large sizes again, but if I were to go back on steroids I would balloon back up and need those fat clothes again. So for now, my closet will stay overstuffed, just in case.
The days just sort of flow into each other anymore. I don't work so I have a hard time keeping my days straight and my life has become a blur of random, mostly non-essential, activities. Everything revolves around how I feel, the severity of the side affects on each given day. My sinuses are so raw from the Avastin that I can't walk outside in the cold anymore, so I am considering starting to go to the gym and give the treadmill a try a few days a week. I need to get some exercise and I miss walking. I still have a membership to Hansen Park Fitness, I just hate going to a gym in my condition with all the "beautiful people" (the regular workout people who look fantastic, watching their perfect bodies in the mirrors) and me barely able to do 3-miles per hour on the treadmill. I know I make people uncomfortable with my bald head and fragile health, but I guess that is just too bad, that is their problem, not mine. The Cancer Center has a restorative yoga class on Fridays, but I have to pay for them, so I should use what I already pay for, which is the gym.
I am not one for resolutions, but this year I made an exception. My resolution is to live to see 2012. This is one I'll have to work hard for, but definitely a do-able goal! Hope your New Years was grand!