Wednesday, June 1, 2011
(Pink Tumor Road final entry, by Mike Jansky)
A memorial service will be held for Patty at 11:00, Saturday, June 4, 2011, at Central United Protestant Church in Richland, Washington. In lieu of flowers, at Patty's wish, donations could be made in Patty's name to a college fund account that has been established at GESA Credit Union (any branch) for her daughter Peyton, to any cancer society, or to the Mid-Columbia Ballet. This will be the final entry for Patty's blog.
There is no measure to the remarkable essence of Patty Taylor. Those of you who simply have read this blog know a part of her. Those of you that have had the privilege and honor of meeting her know more. There is the grace, dignity, and intelligence of the beautiful lady. There is Patty's passion for life and her love of family and friends. There is the courage, the energy, the determination. There is the compassion, the caring, the gentleness, the calm. There is the work ethic that earned, deservedly so, the respect of her peers and superiors. There is the personality attribute of giving freely, while expecting nothing in return. Patty could enter a room and brighten the spirits of everyone in it. Never claiming to be perfect, there is much that is generally considered right and good in a person that made Patty who she is and was.
We cannot forget the controlled anger and hurt toward her cancer. There was no 'fairness' here, but as it was with Patty she worked to fight it, understand it; the key was to live with cancer, not die because of it. She chronicled much of it in this blog, sharing both joy and pain, honestly reflecting her feelings of times of loneliness, uncertainty and fear, but always, always, hope.
Patty is, and was, my lady; my treasure, my dream, my love. Patty did not choose to leave. She controlled that which she could, as best as she was able, with what was availaable.
There are so many people who were impacted by Patty in so many ways. Patty's mother and father (Jean and Red) were unwavering in love and support of their daughter. Patty's children (Peyton and Houston), and her grandson (Jessie James) and his mother (Elena) were the light of Patty's life. Patty's friends and acquaintances are legion, all of whom lifted Patty's spirits. That level of energy deserves so much, but to all of you, I simply say 'Thank you' from the heart, which says it all. Thank you for all your thoughts and prayers; your notes, your calls, your visits. Thank you for the gift of time with Patty. Thank you for the cards, meals, and donations. Hopefully, in closing this blog, as you read Patty's words they should be taken as they were given, honestly and freely with knowledge that the journey is not taken isolated and alone, and with the hope that there will one day be a cure.
To Patty, Believe, LAAF, Mike
Tuesday, May 24, 2011
Friday, May 20, 2011
Friday, May 13, 2011
Saturday, May 7, 2011
Tuesday, May 3, 2011
Sunday, April 24, 2011
I'll blog later. Happy Bunny day! He has risen. He has risen indeed!
Sunday, April 17, 2011
Monday, April 4, 2011
Well, this is the deal.
I saw Dr. Rado today and we addressed a whole host of issues from dry mouth to skin sores. It seems that every time I see the doctor my list of side effects grows along with the medications they put me on to fight those side effects. Today I left with four new medications to add to the 12-14 that I am already on. A few of them are short term, so they will go away in a week, but it seems so crazy to me the constant barrage of medications. It seems there is a medication to fight the side effects of the medication!
My platelets haven't moved one point. They remain at 44 which means I can't take the new chemo, Tramadol, which is just fine with me. I am sick of taking chemo and adding another one didn't fill my heart with happiness anyway. So no new chemo. Yea me! We spent quite a bit of time on when I should take a break from everything for a little while. The evidence of my platelets not coming up shows how tired my body is and that it is becoming unable to rebound anymore. Basically it needs a rest. We discussed stopping right now, but decided that I will do one more round (two doses) of Avastin in April and then assess after we do all my scans in May and if there is either no improvement or (hopefully) an improvement then I will take a month or two off everything. I will get to rest!!! Which means that when my family comes up for my birthday in late May I will feel good, I will be able to enjoy my family. I'LL BE ABLE TO TASTE AND ENJOY MY CAKE!!!! The plan is that both my brothers and their wives will be visiting for the weekend and I think we should just skip to my 50th birthday, that way I'll be sure to celebrate that milestone...
Okay, maybe not, but it sounds good. We will just go ahead and celebrate 48 and be glad for it. That is a good age too.
So dose one of my Avastin is in and I'll do another dose in two weeks and then in early May we'll do a bone scan, full body CT scan and an MRI of my brain. My prayer is that it will show an improvement in my brain and all clear everyplace else. We figured that it would be better to get one more dose in and working before the scans to give me the best chance of an improvement. Fight. That's my job for the next month. Fight and fight hard. Then I'll get to take a break. I know that I will be doing some form of treatment for this cancer for the rest of my life, so I'll do the best I can to make it a good strong fight. One worthy to be proud of; worthy to hold my head up and say look, see me, I can duke it out with the best of them. Cancer, you are not going to take me down, I may have to fight the rest of my life; but it will get better, I'll take a break and get stronger and I will overcome cancer. Its a fight I just can't lose. I have too much to live for and I plan on living good.
Sunday, April 3, 2011
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight. Proverbs 3:5-6.
I struggled my way up this morning and made the decision to go to church no matter how tired I was or how hard it was to move. I knew God had a message for me, and maybe for you too. I was right. I have to admit that I am angry with God right now. Why me? This is so unfair that me and my family have to endure this horrible cancer this incredible burden. Why, when I did everything right, living a good healthy life and was struck with this horrible disease. And it doesn't just affect me, it affects my whole family. It is unfair to my children, my partner, my parents and my friends. I have shared this with God too, that I am mad at Him and I don't understand why He gave me this burden to carry, it is such a heavy load and is wearing all of us down so much. But today I was reminded that He knows the burden He has laid upon me and He has a purpose, I just can't see the big picture. God knows my past, present and future. He knows if I am going to survive, He wants me to learn to trust in Him and carry His torch no matter what the cost or consequences. My favorite passage is in Jeremiah 29:11-13 "For I know the thoughts I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon me and go and pray to Me and I will listen to you. And you will seek Me and find Me when you search with all your heart." I was reminded of this promise today. He does have a plan for me, even if I can't see it clearly. I just have to keep fighting every day and keep my faith strong. Its waning some days, my faith, and it is a heavy load to just keep my chin up and keep believing. But that is what I am called to do. Keep faith that God sees the bigger picture and that He will direct my path, no matter where it leads. Even if it leads to a place where I don't want to go. I have to trust God will go there with me.
We are all going to die. Its a matter of when and how. And when we do, God is going to be there with us. He is going to walk across that void with us and we will not be alone. We will meet our maker and the reasons for our trials will become evident. The Plan will become clear. I wish I had that plan now. I want to know if I am going to live or die; truly I want to live and I want to live long and good. There is more I want to do and see and say and write and experience. But that is not my decision, All I can do is keep fighting every moment of every day and trust not in my own understanding. Cuz, you know what? I really don't get it. I don't get the unfairness of it all and I probably never will. That's not my job. My job is just to trust God, no matter where He leads. And to show that trust to others. Be a beacon of light on a dark cold night and give light and love where there has been sorrow and pain. I need that in my life and I need to share that in yours.
So that is what I heard in church today. I think it was worth getting up and dressed for. And I believe I was meant to share it with you. I am working on forgiving God, He can handle my anger, but He needs me to forgive and trust. So that is what I am working on. Forgiveness and trust. I pray for it fervently; along with healing. More than anything, I want to be healed and go back to my life but in the meantime; I need to trust and forgive God the burdens He has lain on me. There is a reason, even if it is very unclear. Hopefully I am helping someone along the way, showing light and life where there is darkness and pain. So I pray for healing while I work on forgiving God the burdens He has lain on me. Its the best I can do for now.
Saturday, April 2, 2011
I know I haven't posted in a few days, its been a really rough week. The broken shoulder has caused me alot of pain so the medical team upped my pain medication which has made me totally listless and lethargic. I can barely move this week. I go from my chair to bed and don't do much inbetween. I did go to my exercise class this Thursday hoping it would pep me up, but it just made my legs more tired and I was even more lethargic than before. So I am taking the pain medication back down regardless of my shoulder pain. I would rather have a little pain than have my head so full of fog. So I am contending with pain in the hopes of clearing my head. I don't like this indeterminable mist I am living in so we are hoping if I don't take as much pain medication the fog will lift. I sure hope so. This continual fatigue is getting very old. I don't know how long I can live like this.
I see Dr. Rado on Monday and we have a list of questions; first being - when can I take a break? My body is overwhelmed. If bringing the pain meds down doesn't clear my head and make me feel better, than maybe I need a break from treatment. I haven't really had a break since we went to the I am beginning to wonder if this is my life. Am I going to spend my remaining days on this earth fighting this disease. When Kim lost her battle so suddenly it sure made me wonder if I might suddenly lose my battle without warning. I hope the fatigue and lethargy I have been feeling are medication related, not symptom related. In other words, I hope the tumors are shrinking not getting bigger and the only way to know if the tumors are growing are an MRI which is not scheduled until May. Until then I just hope I can deal with all these damn side effects and start feeling a little better so I can get around and have more of a life. My life consists of simply existing right now, and I want more from life than that. I want to live. And the way I feel, living isn't what I do, I simply take up space and oxygen. I want more. I want a life not just an existence. I am ready to take up my sword and live again. Even though I can't go back to work, there are things I want to do and I have to feel better to start doing them! So pray for me to feel better soon and be able to start living again. This current life is sure getting old. I am ready to have my energy back and be able to walk the dogs and work in the yard and be a productive member of society again! Pray I can get my life back!
I see Dr. Rado on Monday and we have a list of questions; first being - when can I take a break? My body is overwhelmed. If bringing the pain meds down doesn't clear my head and make me feel better, than maybe I need a break from treatment. I haven't really had a break since we went to the
I am beginning to wonder if this is my life. Am I going to spend my remaining days on this earth fighting this disease. When Kim lost her battle so suddenly it sure made me wonder if I might suddenly lose my battle without warning. I hope the fatigue and lethargy I have been feeling are medication related, not symptom related. In other words, I hope the tumors are shrinking not getting bigger and the only way to know if the tumors are growing are an MRI which is not scheduled until May. Until then I just hope I can deal with all these damn side effects and start feeling a little better so I can get around and have more of a life. My life consists of simply existing right now, and I want more from life than that. I want to live. And the way I feel, living isn't what I do, I simply take up space and oxygen. I want more. I want a life not just an existence. I am ready to take up my sword and live again. Even though I can't go back to work, there are things I want to do and I have to feel better to start doing them! So pray for me to feel better soon and be able to start living again. This current life is sure getting old.
I am ready to have my energy back and be able to walk the dogs and work in the yard and be a productive member of society again! Pray I can get my life back!
Monday, March 28, 2011
Saturday, March 26, 2011
It has been nice spending time with Bob and Sue and getting to know them. Sue is a sweetheart and wonderful to be around and Bob is just as I remember as a child; an overprotective big brother doting on his little sis.
The fatigue is what gets me the most. I am so incredibly tired. I could sleep forever. The other day I slept until 5:30pm and woke up totally disoriented thinking it was 5:30 in the morning, then went back to bed at 8pm and slept all the way through to the next day except when I would roll over on my shoulder and the pain would wake me up. So, although I am really tired, I am not sleeping well, it is interrupted sleep. Probably doesn't help the fatigue...
So onward I go, one day at a time trying to keep my attitude good and my heart filled with love and joy.
Friday, March 18, 2011
We all have our crosses to bear within our lives, burdens that seem so overwhelming that we believe there is no way we can make it through. But somehow we do, we make it through that moment, then the second and then the entire day is done; and the cross is still being dragged on your back but the burden seems slightly lighter. Thats when you realize that you are being carried on the wings of the prayers of your friends and family. They have wrapped their prayers around you like loving arms of support and carried you through the day. What a revelation it is, that God has sent His angels in human form all for you. So you could make it through the day.
That's how I feel, I feel you there holding me up, thank you for your love and security and willingness to do God's bidding. Its getting me through.
I am excited for an upcoming visitor. I have a half brother who lives in Pennsylvania who we had lost touch with who it coming to visit tomorrow. Bob and his wife Sue are flying in tomorrow and staying for a week. I am looking forward to getting to know him. Its been over 20 years, he's never even met my daughter; in fact didn't even know I had a daughter until about 5 years ago. So its going to be a gala reunion. Wish Bill could be here too, then we'd have the whole family! But they couldn't get their flights coordinated so I'll have to see them separately. But at least I get to see them! Brother Bill and Rhonda are coming back up for my birthday at the end of May, maybe Bob can find a cheap flight and come up too, what a great birthday that would be!!
I had chemo today, but they held off on the new chemo, temodar, since my platelets have dropped so low. They are down below 50, so I need to be really careful, I am at risk for bleeds and if I were to hit my head it could be catastrophic. I fell coming in the house yesterday after church. I tripped coming in the front door and landed flat on my face. I hit the door so hard that it slammed into the wall and the doorknob put a hole in the wall. So I need to be extra careful. They are going to check my platelets again on Monday and hope that they come up to a safer level. Over 100 would be great.
Tomorrow I have a facial and then I am going to try to do my exercise class. Last week I was just too tired and weak to do the class. Hopefully my energy level will increase enough for me to do a little bit. I think it is good for me.
I learned recently that my friend in Seattle who is fighting leukemia lost her husband. He was in a car accident back on 12.30 and has been in Harborview ever since. Unfortunately he lost his battle and I worry about Chris. He was her life long partner and caregiver during the battle with this heinous leukemia. But she is a strong woman, with a good support group. I have faith she can make it through.
I'll try to do better blogging. I just have been so tired that all I want to do is sleep. So I am letting my body sleep when it needs which takes most of my days! Be assured that I am okay and that I have alot of people taking care of me. I am well tended for; and with the addition of all your prayers, I'm making it through. Thanks for being an angel in my sometimes dark and dismal world. Your halos are shining bright.
Wednesday, March 16, 2011
I found that joy today. It was only for a few moments, I couldn't sustain it, but I grasped on to it and held it as tight as I could and let it trickle through my fingers and fall on the ground around me. I let it splash on to anyone I could find and let them feel the joy. And it spread a smile onto their faces because they didn't know what was happenening, they only knew that they felt better. They felt different because joy was overtaking them and they didn't even know.
So the next time you feel that joy, share it. Willfully and purposefully. Give it to everyone you can. The world will be a better place for your kindness and readiness to share this beautiful gift you share with God. Give it freely. Joy. Its puts a smile all around.
Saturday, March 12, 2011
A friend of mine has set up a really cool thing for me to cheer me up. She put a basket by my front door and every Friday someone will surprise me with a special gift. Isn't that awesome! I look forward to what people bring me. It could be a chocolate bar or a churro, a candle or a DVD, it doesn't matter, its the not knowing what it will be and the fact that people are still thinking and praying for me after all this time, coming up on two years. I would think people would start forgetting about it, but my friends are true friends, not only have they not forgotten me, they continue to find ways to lift me up when I am down. What a gift that is. To know undeniably that I am loved, cared for and prayed for every moment of every day. I truly believe that. With all the people who stay in touch, I can't believe that a moment passes where God does not hear my name. Hopefully He will get tired of it, cure me and set me free!
I was asked about dinners again and I am considering it. Maybe just twice per week so we don't get overwhelmed. Its just Peyton and I and we can get too much food really quickly. So I will get ahold of Nicole and she may arrange some meals for me. It would be nice to not have to worry about food a few nights a week. So if you are interested in providing food, I'll be in contact with Nicole and she will set it up.
Well I am tired, so that's all for now. I still can't drive, which makes me crazy, but I still don't have good control over my right side and the strength in the right leg. I would hate to be driving down clearwater in traffic and all the sudden I lose control of my leg. I could hurt someone and for that I would not be able to forgive myself. Once I feel confident I can drive safely, I'll start making short trips to the cancer center or store. Close places with low risk of injury. Probably a few more weeks. I just want to be safe. But loosing that independence is really tough. I can't wait to get it back. Soon. Hopefully soon.
Love to you all, be kind to each other. Each other is all we got!
Wednesday, March 9, 2011
I continued to do my exercise class this week. I did what I could, which wasn't much, but it was better than nothing. Like I said my balance is way off, so I have to hold on to chairs and walls as I go through the movements in order to keep from falling down. Unfortunately my yoga class has been canceled, there was not enough interest to keep the class going.
I take my meds on schedule with Mike's help. For some reason I get really confused when and how much to take so Mike calls me round the clock to remind me. Even at 4am every day. The other morning I was in the bathroom at 4am plus I had my phone turned down and I look up and there he stands, in the bathroom door making sure that I was okay, which I was. He had me take my pills and was on his way and I was back asleep, barely ever awaking. What a man to take such good care of me. Between he and my parents they shuffle me around to my various appointments, Mike attends all the doctor and chemo appointments and makes sure I stay on track. Its all so overwhelming. I thank God I have him.
Dinner is almost ready, so all for now. I'll take my meds at 8pm when Mike calls me and I will be in bed by 9 or 10. I just don't have the energy to stay up very late and I count so much on that voice on the other end of the line that loves me so.
Keep praying for a good outcome. My bone scan, MRI and CT are scheduled for early May so we won't know until then how well the Gamma Knife worked. I have high hopes. And I know I don't want to do this again, but at least I know its there if I need it again.
Friday, March 4, 2011
Until then I sit and rest and I know what to do when the symptoms start. Get to a place to lay down and let it pass. Hopefully someone will call me and give me some advice as to how to keep these mini-seizures at bay.
This sort of sucks. I'll keep you posted.
Thursday, March 3, 2011
Finally they got the planning done and I was taken to the Gammaknife machine. I made them let Mike stay with me and hold my hand while I was bolted into the Gamma, which was another painful procedure then I laid there for 55 minutes while the machine did its job. Alone in the room, listening to Norah Jones, trying to relax, trying not to feel the pressure pushing down on my head and shoulders. Praying it would not only work but be over soon. Once the planing is done it is all automated and the nurse and physicist just observe and make sure it works as programed. Apparently it did and one hour later I was being unlocked from Gamma and the halo was removed, thank God. It still took about an hour for the pressure to receed and my head to start to feel normal and even today I am still experiencing numbness and terrible headaches.
After I got out of the shower this morning I was sitting there and my foot started to shake uncontrolably. I moved from the chair to the bed and began to massage the foot and leg to stop the shaking. This is exactly the way that the seizure started before and I am not going to risk it happening again. I laid in bed, called my mom and didn't move until I have someone do help me downstairs. I was going to go to exercise class today, but I am not risking another seizure and the shaking leg was the first symptom when it happened before.
I am glad to be home. The biggest side effect is swelling and exhaustion. So I will probably rest the afternoon and see how I feel later. I know I am now getting beind the wheel of the car until I am relatively certain that I am not going to have a seizure. Not today, maybe tomorrow.
My brother and his wife will be in tomorrow night for the weekend. I hope I am feeling good enough to spend some quality time with him.
I am just so glad this is over. I hope I never have to do this again but at least I know its there if I need it and if tumors return.
I am off to relax but wanted you to know I am here safe and sound, recovering as fast as I can. Will post later.
Tuesday, March 1, 2011
I talked to Beverly at length today. She is the nurse I spoke to yesterday who will be assisting on my procedure. She was surprised she hadn't told me all the information, gee, she thought she had. I reminded her no, she didn't, since they sent me home last week. A little disorganized is how it felt. But after talking to her for about 20 minutes, I felt better. I feel more in control of my body and this procedure and what is going to happen to me tomorrow. I think one needs to feel informed and empowered when it comes to medical procedures in order to get through them most successfully.
I check in at 6am, go downstairs to the gamma place and they "turn me into a patient"; I get my gown and pressures checked and all that good stuff. Then the IV team comes at 6:45 and no, they don't need any information about my mediport, Beverly checked. She apologized for getting me upset about that. The IV team has no problem with any mediports. Then they will sedate me, using conscious sedation including versette and then will set the frame. Even before they put on the frame they numb the four points on my head and she said some people complain about their head being numb for up to a week. I am okay with that. I do NOT want to feel the frame bolted into my head. Then they will put me in the MRI; get a good scan with the frame and then the experts will spend the next hour putting together the perfect plan that will maximize tumor destruction and minimize impact on good tissue. Once the plan is set and put in the gamma machine computer, I'll be put in the machine and this high tech machine takes over following the set guidelines to within .5mm.
After the procedure they will remove the frame, I'll be under observation for a few hours and once I am deemed safe and sound, they will send me home. Mike will drive, I'll probably sleep. They said that most people are really tired for the first few days following and experience headaches for more days than that. Like I said before, swelling is a problem, so we'll be watching for the side effects of swelling and probably increase the steroids to control the swelling. Right now, at least I know what to expect and am ready for tomorrow morning. In truth, I am sort of excited. I feel like we can blast the guts out of these tumors and they WILL BE NO MORE! Yea!
Pray I'm right and I'll blog when I'm conscious again tomorrow or Thursday. If you don't hear from me, it doesn't mean I'm not okay, it means I'm sleeping or trying to get over the affects of the procedure. I will try to at least put an update on facebook letting you know I'm okay. God Bless you my friends and prayer warriors. You are the best.
Monday, February 28, 2011
Given the condition of the pass, Mike and I are going to try to get on the road about 12:30. We will try to call again on our way up there and see if we can connect with someone a little more knowledgeable about Gammaknife and the process involved and maybe I can feel a little more secure about the fact they are shooting high dose radiation beams into my head and bolting a frame onto my skull. Little overwhelming...huh?
Jessie came over to see me and cheer me on tonight, which really helped. He never ceases to bring a smile to my face, he is such a joyful little boy. I felt more optimistic as soon as he walked in. I thinks its going to be okay, even if the details are a little sketchy.
Safe travels. Safe procedure. Complete cure. That's my prayer.
I go over to the cancer center at 11:45 to get that skipped dose of Avastin and wish I felt better. Maybe its just this cold I'm fighting and is sapping all my energy making me very shakey and weak. I'll keep taking my vitamins! I checked the weather and there is going to be snow and rain on the pass tomorrow so it might be slow going. I may skip my exercise class and just head out after my therapy to give us plenty of time less the pass get closed for any period of time. I have to make it to Seattle tomorrow I need this procedure on Wednesday. I want these tumors gone!
There is wi-fi at the hospital, so I will keep you updated on the procedure. If you want to see how it is done you can google "gammaknife" and it goes through the steps. I still think the worst part is going to be bolting the frame to my head, thank God for sedation!
Say prayers for safe travel and a successful procedure and for me to come out of this tumor free!
Sunday, February 27, 2011
I have my skipped dose of Avastin tomorrow too and I need to be healthy for that, I am sure my immune system is currently working in overtime trying to get well. Thinking of it, I should probably have called the doc on Friday and got my blood work done to see if I needed an immune system boost. But, we will know tomorrow. The plan is Avastin tomorrow and on Tuesday I'll have PT and am going to go see a psychotherapist to help me deal with some of the issues unique to cancer patients. Then I want to try to do my exercise class, depending on how I feel and then its off to Seattle. I am glad that my procedure is bright and early, get it done and over with and back home. The only thing I am apprehensive about is the frame they are going to bolt on to my head, but sedation should work wonders.
Since I can't go to church today I am asking for an extra round of prayers to get me healthy and keep me well and for this procedure to be successful. It may be awhile before I see the positive effects of the Gammaknife. There may be swelling which will cause me to get worse before I get better. There shouldn't be any bleeding, but there is always a chance, so we really want to avoid that side affect. Brain bleeds are not a good thing!
So today I will rest and work to get well so that I am ready for everything this week. Its going to be a busy one! Say lots of prayers, God is listening and this time I hope his answer is "yes" you are healed!
Friday, February 25, 2011
I will have my missed dose of Avastin on Monday, Tuesday I have PT and my exercise class then we are heading to Seattle. There is a hotel at Swedish that we are going to stay at which will be really convenient, its on the 5th floor. They renovated a few rooms into hotel rooms so we will be able to just get up and go down to check in without ever leaving the building, which is great. Barring any complications I'll come home the same day.
I am going to take it relatively easy this weekend and rest up for a busy week next week. Keep the prayers coming that the procedure goes well, smooth and easy, and I am back home Wednesday evening as planned. While you're at it - pray for good weather too!
Wednesday, February 23, 2011
We got there right on time and we met with neuroradiologist Dr. Meier who, along with a neurosurgeon, will handle the procedure. He went over both Gammaknife and Cyberknife and although very similar they have slight differences and I am a candidate for either one. Gammaknife gets within 1/2 mm of the zone and can be done on the same day. Basically you get a frame attached to your head to make sure there will be no movement and everything will be exact head on and that is the worse part, the bolting of the frame to the head. Then I will have an MRI and they will get in there and with a radiation beam zap the tumors within .5mm margins. The frame is removed you are sent to recovery and go home the same day. These tumors will never come back. There may be others and those could also be treated with Gammaknife, but these tumors will be dead. Hopefully eventually they will sluff off and be absorbed back into the body leaving me back to normal. I may have some long term damage that may never go away, but I'll take that over death anyday and it shouldn't be any worse than it is now. Initially the symptoms may be worse with swelling at the "surgical" site but they will give me steroids and it should clear up in a few months. In the meantime Dr. Meiers noticed that one of the tumors may be on the menengi, which is the lining of the brain and connects into my brain stem. So tomorrow I am having a spinal tap at Kadlec to check the spinal fluid for cancer cells and they are going to infuse chemotherapy into the spinal column prophactly just in case like they did last time. Then if there is cancer, they have the first dose in fighting the bad cells. We will relay whatever we find out to the doctors in Seattle so they can treat appropriately.
Dr. Rado thought that Avastin had to be withheld for 4-6 week prior any Gamma or Cyber knife procedure but we found out that that isn't necessarily true. Dr. Meiers doesn't think it needs to be withheld at all, so we are going ahead with the Avastin on Monday so I can catch up on my skipped dose from this week.
Swedish sent us home about 4pm yesterday, the pass was closed but they were clearing it and it was due to open anytime. I asked them...are you sure you can't do the procedure tomorrow or the next day? They were certain they couldn't get insurance to approve that fast. So Mike and I slowly headed home. It was a long and hard haul. Heavy snow and traffic, most of the accidents had been cleaned up. The highlights were a stop in Issaquah for Krispy Kremes (YUM) and Miners for a burger and shake just before home. We finally got home about 11pm, 7 hours after leaving Isssaquah.
Then my senses were right and I got a call at 7:45 this morning asking if I was still in Seattle and if so, and I could have the procedure at 7am on Thursday. No go, I was already home and a big storm was battling the pass. So we decided to schedule it for next Wednesday, check in at 6am. We will go up on Tuesday. I think that this is actually good, this way I can have my spinal tap and missed dose of chemo before the procedure.
I am not really scared except for having the bolting of the frame on my head. They sedate me ahead of time, so it should be okay. After all I have had done to me, whats a few little bolts in my head?
I am pleased to find out I am eligible for this breakthrough treatment. It gives me a little jolt of positivity and hope. Just another thing that's going to work for me to get rid of this horrible disease. Another arrow in my teather, so to speak.
Pray that there are no cancer cells in my spinal fluid, that would be bad, but not the end of the world. Its treatable. They weren't there before and they shouldn't be there now.
The staff at Swedish was helpful, thorough and kind. I feel I am in good hands and they will take great care of me. The staff down here has been amazing putting the proceures on this end together so quickly and get me ready for next week. So I need to find an inexpensive hotel for Tuesday night and get ready to go. Its going to be an exciting procedure. Thanks for all your prayers. You helped me to be eligible and you got us to and from safely. God is listening.
Monday, February 21, 2011
There have been alot of ups and downs today. Sometimes I find myself just melting in to puddles of tears and desperation. It doesn't last long and I can snap myself out of it and be aware of the positive that can come of this; I could be cured. I will be cured.
So be with me as I travel and as I meet with the experts. Guide their hearts and their minds, give them the wisdom to prescribe the right treatment at the right time. Pray for a blessing on their hands and their hearts. And as for me, pray for me to have an unflappable faith that God is in control and I will overcome this horrid disease.
I just think of my parents, Mike, My children, grandchild, friends. I am not afraid to die, I am afraid of what will happen to them if I go. They need me, we have to much more to do together. So fervent prays every change you get. I will feel them washing over me filling me with the light of Christ, the warmth of heaven will inspire me and keep me moving forward and staying strong.
So be with me in my sadness, be with me in my joy, be with me in my uncertainty and help me to trust that what will be will be. I am under God's plan, for better or worse, but I do believe that all things work together towards the glory of God. So I hope I can bring Him alot of glory.
I'll blog tomorrow night and let you know what they say.
Love and blessings,
Friday, February 18, 2011
I got a call from Swedish yesterday and I have an appointment with a specialist up at their neuro center on Tuesday to see if I am an candidate for Cyberknife. I am really hopeful. If they can do Cyberknife without too much collateral damage maybe we can zap these tumors once and for all. Between that and the new chemo, I think we have a good plan. Say your prayers it works.
Its hard to lose my independence. I can't take myself to exercise class, the store, yoga, the doctor or physical therapists. Driving is out of the question, I walk around wondering if or when another seizure will hit and I know I don't want to be behind the wheel when it does. So I depend on my family and friends and they have been incredibly helpful. Hopefully the tumors clear up soon and my independence returns. I was listening to a meditation yesterday for cancer patients and it had an affirmation statement that really struck at my core; I will survive not out of fear of dying but out of the joy to live. So I face each day with as much joy as I can muster. Joy for the sunshine, joy for the rain, joy for my family, my children, my grandson, my man, my friends. Joy for the ability to get out of bed in the morning, joy for all the people who are praying for me around the world. There is joy in the most minute of things, we just have to open our hearts and our souls and let the elation that is life pour in and fill us with its light. There are healing powers all around us, we just need to take the effort to tap into in, wallow in its essense and let it fill our body from top to toe. Let God's joy light us up from the inside out ravaging the cancer cells and flooding them from my body.
I know there is hope, there is optomitsm, it is just a matter of changing my state of mind. I remember the old classic Bing Crosby tune; eliminate the negative - accentuate the positive don't mess with Mr. In-Between. Good Advice.
So let the light into the very core of your soul and let it spin and whirl in and around you making your day, no matter how difficult, easier to walk through with your head held high and a shine in your eyes; a smile on your face. And stay connected with God, He will lead you forth.
Wednesday, February 16, 2011
They have me on alot of antiseizure medication, I'm using a walker and I'm not allowed to drive. I am going to be on the mercy of my friends and family to get to all the places I need to go and I have just really gotten involved in some great support classes. I have exercise twice per week, yoga on Fridays, PT once per week not to mention the doctors appointments. So there is a real burden on my family right now. I hate depending on other people to do things for me, I am so independent that this is going to be hard to handle.
I am working to overcome the fear of the unknown. I never know when another seizure might hit and I find myself flailing on the ground. Rand and Gay had a First Alert installed in my home that I wear around my neck so if I fall I push one button and am connected with help who will call someone to help or send a paramedic or whatever I need. It makes me feel much more safe when I am home by myself and at least gives me a little independence.
I'll keep you updated as the treatment progresses. For right now, I ask you to join me in my fervent prays for a complete recovery.
Tuesday, February 15, 2011
So the news isn't good and hopefully Rado will have a better plan. I am not a candidate for gammaknife or cyberknife since the tumor is so spread out they would have to take too much of my brain to make it a viable surgery. So I am going to talk to him about uppimg my medication, hittng it harder and longer. Maybe that will work. I am determined to beat this. Whatever it takes. Pray with me and I'll keep you updated.
Monday, February 14, 2011
I did go to Spokane with Mike yesterday to see Legally Blonde. We had no incidents and really enjoyed ourselves. I will update all of you after I see the doctors and let you know what they say. Pray there is an alternative treatment that will work on these brain tumors. They are really annoying.
Pray hard and fervently, this is not the way I want to live my life.
Saturday, February 12, 2011
All I know it this has been terrifying and I don't want to ever experience it again. I'll see my neurologist in a few weeks, she is out of town, so I am going to call Monday and see if she has anything else to add to the management of the seizures.
Mike and I had a plan to go see Legally Blonde in Spokane tomorrow, and our plan is still to go. Peyton is housesitting for the next week, so until I feel confident that I can be by myself I am going to be switching houses, Mike is staying here tonight, I stayed at my parents last night and we'll see how I am on Sunday night. I do know that if it happens again I do not get out of bed, I stay where I am and call 911. I asked Dr. Rado if the odds were good that this would happen again and he commented "it was likely." Am I scared, yes i am, scared out of my wits.
I'll keep you posted and you join me in praying that the seizures stay away and that stupid trumor shrinks. Thats the best I can think for now.
I'm off to take a nap, its been an exhausting few days. Lets pray for a rockin improvement.
Wednesday, February 9, 2011
So beware and be ready for unexpected changes in your life. They can happen in an instant and will transform your life. Although at first it may seem the end of all you know and all you are but you are facing a great transformation; how will you handle it? Will you moan and wail all the unfairness that has befallen you or will you realize that this is an opportunity to change your life and attitude. A change which will cause us to rely on our most awesome God and learn to trust in Him and His divine purpose for your life. There may be great things ahead for you. Give tragedy and change a chance. You my be surprised where your world is headed.
Tuesday, February 8, 2011
I started my exercise class today, sponsored by Kadlec Therapy Services, and it was wonderful. I realized 1) how out of shape I am, 2) how bad my balance and right side weakness has become and 3) how much I loved being there and I can't wait until Thursday. The program is two days a week, one hour each session. There is a definitive workout format, warm up and stretching and then exercise that starts slow and builds up each session. So today I only had two sets of three exercises to do, next time I'll have four, then six; each session adds one or two exercises so for those of us who have been in therapy for a long time can work our way back into exercising. I am so grateful for Kadlec providing this service. The two classes plus yoga on Fridays is going to be a great addition to my healing. I can do all these exercises at home so I am planning on exercising on my off days too. I felt really good after class and went and did some shopping, but I do have to say I am pretty tired tonight.
My latest side effect is my nails are turning yellow and brittle and a few of the nails are starting to separate under the nail bed and could actually fall off! I am a little dismayed since I showed Marlene my toenails over a month ago and thought they were getting a fungus or something and she told me they were fine and that I had just cut them too short (I can't feel my toes so I have to be careful cutting my nails) and I should let them grow out and file them instead of cut them. But it wasn't until this spread to my fingernails that I started to research it; and I asked the PT at the class if she knew was it was and she said yes, its caused by the taxol drugs, which I am on. I need to be careful about infections once they start "spooning" (pulling away from the nail bed) and I have done some research on reputable internet sites on how to care for my nails and I plan on talking to the doctor as soon as I can.
Enough for now. You probably didn't want to hear about yellowing nails! Gross! Oh well, I have always been open and honest on this blog and I will continue to do so! God bless.
Sunday, February 6, 2011
I went to church this morning and the service was wonderful. Monte was preaching about how God is our refuge in our times of trouble and we only need to ask Him and he will shelter us when we need His help. He then asked everyone who needed God's refuge to stand and be prayed for by the other members of the chuch who were standing around us. It felt so uplifting to know that these people were praying for me and that God IS my refuge and He's here to protect me and shelter me from this storm I am in. As I stood there and cried as my best friend held my hand and cried with me. It was a beautiful moment.
Later that afternoon Tina and I went to the local colleges theatre to see "Wilderness of Mirrors". It was a very enjoyable play, intriguing with a sad but bittersweet ending.
Then it was off to my parents to enjoy some snacks and superbowl. My team won. I'm not a fan of either team, but Green Bay is my preference so I was glad they won. Some of the ads were halarious but not as many good ads as I would have expected. I loved the Budweiser outlaw, Darth Vader and Teleflora. Those were definately my favorites.
Tomorrow is the doctor and chemo. I am not looking forward to it, but I guess every dose gets me closer to the end of treatment. So, lets get another one down. Pray it goes well and that I'm not that sick and I'm able to do my exercise classes. In the meantime I am looking to God to be my refuge; I don't think I can handle the storm much longer.
Wednesday, February 2, 2011
I continue to gather goods to give to Goodwill. This time I'm going to try to take it to them a few bags at a time so that I don't have a whole truckload! There is a drop off center right at the mall, so its convenient. I feel like I'm making progress. Once the weather warms up, Peyton and I are going to tackle the garage. We have boxes we haven't opened since we moved in...so I would venture to bet its mostly Goodwill stuff. I mean, if we haven't needed it for four years, we probably don't need it. I think a few of the boxes are Peyton's stuffed animals so we may pack some of the items with cedar chips and put it into storage. I understand the need to keep certain things of emotional value, even if it is stored away in a box. By this summer we should have the whole house done. At least that is my goal, and when you don't work it is important to have long and short term goals; something to work towards. So I am setting a goal everyday to get certain tasks completed with a long term goal of having the entire house done by the summer.
I'm feeling pretty good and have signed up for a few exercise classes specifically for cancer patients. One is a restorative yoga class at the Cancer Center and the other is sponsored by Kadlec and is a weight training class for breast cancer survivors with lymphedema. I am excited. The Yoga class starts on Friday and the other next Tuesday. It might help with the lymphedema to get some moderate controlled exercise. I'll let you know how it goes.
Go out and make it a wonderful day. Stay in prayer for those who are in need. God is listening.
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.