The essence of my lady

The essence of my lady

(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

My mother's memorial will be held at The Central United Protestant Church (1124 Stevens Dr. Richland, WA) on Saturday June 4th at 11am. As per my mom's wishes, instead of sending flowers, please donate to a cancer society in her honor or to a college fund for me if you wish. The account for the college fund is in the process of being set up at HAPO Credit Union and when it is open I will post the information on here. Thank you all for your prayers and support through this long journey.

Today at 5:15 my mom lost her battle to cancer. I will post more information later about a memorial service. But please do not send flowers, there will be an account set up for donations which I will give information about at a later time.

My mom saw the oncologist on Wednesday and the prognosis is not as good as we would have hoped. Dr. Rado said that it is time for the disease to take its course and to keep her as pain free as possible. Because of this, we have started her on hospice care. Please keep her in your prayers.

This is Peyton again. My mom is feeling a little better the past few days and is somewhat up for visitors. Short visits are great but only long enough for a quick hello and only when she is up to it. If you would like to visit, call my grandma (her mother) and see how my mom is doing first and when the best time to come would be. If you need my grandparents number, please get ahold of me and I can give it to you.

This is Patty's daughter Peyton. I just wanted to let you all know that she is not doing very well lately. She spent part of the weekend in the hospital after a fall on thursday night. She is very weak and is staying with her parents for the time being. Because she is so weak, she is not really up for visitors. She will be taking time off of treatment in hopes of regaining some strength back. I will keep you updated as I see fit.

Happy Easter!

Well I have done nothing for Easter yet. My mom has purchased all the food and she is doing the cooking later. I have boiled eggs, but they haven't been dyed yet. I am hoping that Jessie can come over and dye eggs. I am stopping by after church to get his easter basket. Like I said, I haven't done anything yet!

I'll blog later. Happy Bunny day! He has risen. He has risen indeed!

Long Overdue Update

Sorry it has taken me a week to update you on my life status! Its been a rough round with the broken shoulder, it hurts like the dickens and just when I think its getting better, I trip and fall and hurt it all over again. I have fallen down the stairs again and then again on the patio when I was getting out of the chair. I just lost my balance and fell and couldn't get up. I was alone and almost hit the emergency button, but was able to use the chair to bring myself upright again. But it sure did hurt my shoulder. Again. I see the doctor tomorrow for another dose of chemo so I might have them xray it again to make sure I didn't do any further damage. I was waning myself off the pain pills and I am still working on that, but the additional falling has taken its toll on my pain threshhold. I am still down to the 20mg oxycontin rather than the 30 or 40 mg which keeps me from being so dopey and then I take the hydrocodone and oxycodone in between since they seem to keep me a little more sober. I got a leg brace the other day which has really helped my walking and sense of balance. You wouldn't know with me falling, but I feel more sturdy and confident. The brace goes under my foot to keep my foot from drooping, which will theoretically keep me from catching my foot and falling. Then it comes up and wraps around my shin and keeps my leg stable. I can really feel the difference with and without it. I get up in the morning and once I weasel my self to sitting upright on the side of the bed I do my exercises to strengthen my toes and feet. My PT gave me a series of exercises that seem to be helping a little, but its hard since my feet are so numb and droopy. But anything that might give me an advantage walking steady is worth doing. I then move on to my daily devotion that a friend gave me that really starts my day with the right attitude. Its Chuck Swindoll daily devotion and I read the devotion and then spend a little time talking to God very honestly about how I feel about the day, about Him, about my treatment. I plea for blessings and healing, for my family and friends. We have an honest conversation which is enlightening starts the day out right. Then the brace goes on and stays on the rest of the day until I go to bed. The fatigue gets completely overwhelming at times and I spend a goodly part of my day resting and reading. My parents have been such a help staying on top of things around the house, cleaning, cooking, walking the dogs. They are incredible and I can't imagine life without them. My arm is really starting to get sore, so I am going to knock it off for the night. I'll try to write again sooner. God bless you. Keep praying.

Break?

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!

Anyway...

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.

Trust

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.

Pray for Life

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 Bahamas in August so I think my body is just plain worn out. So what Mike and I are hoping is that we do this next treatment, I suffer through another month of chemo and after I get my scans in early May there is enough of an improvement that I could take a few months off and recover a bit. If my platelets don't come up I won't be able to take the Tramadol, which I am okay with. I am so sick of being on chemo that skipping the Tramadol is just fine with me. I am banking on the Gammaknife working.

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!

Broken!

Well, I need to be more careful. I told you that I fell coming into the house after church last week and hurt my shoulder. Since it wasn't getting better I told the doctor about it and they xrayed it, then did a CT and found that I broke the top of my humerous bone in my shoulder. The good news is that the break is not cancer related, there are no metastatic lesions which preceeded the break, it just broke. I fell today too, but caught myself against the wall, which tells me that I REALLY need to be more careful. I get too complacent going up and down these stairs and catch my foot and that's it...I trip and fall. So, I am slowing down and holding the handrails and going slower so this doesn't happen again. There is nothing that can be done. They could put me in a sling and immobilize the shoulder so it doesn't hurt as much, but other than that, its just going to take 3 weeks or so to heal enough so the pain recedes. I don't want to wear a sling so I am just going to not use my arm as much as possible. They have changed my pain meds so that I don't have to take so many pills and it should control the pain better. So that's the plan. Pain control and try not to use my right arm. Yeah right. I am right handed, its going to be near impossible to not use my arm! I'll use it the least I can. That's the best I can do. At least I know why my shoulder hurts and isn't getting better! Its not all in my head, I really did break something. I got some bad news today; one of the ladies that was on the retreat in Utah lost her battle with cancer. It is so sad and I certainly didn't see it coming. She was energetic and vivacious and filled her world with light. A joy to be around. We all thought she was battling like the rest of us and the loss has been met with disbelief. It could be any of us. I hate thinking that I could wake up one day and this cancer has taken over my body and is taking my life. Metastatic breast cancer is a sneaky and malicious disease. One day you are successfully fighting it back and the next day it is taking over for good, no more fight left, the cancer has won. I try not to think of it. I try to think that I will always be in the lead in the fight, winning; but I know there is always the chance that I will lose this battle. But, like Kim, I hope to leave behind alot of joy and light. If I die, my prayer is that the light I leave behind is brighter than the darkness of this disease. So I will let my light shine, no matter what the circumstances, no matter what the situation. Shine on light, shine on.

Sore Arm

Its been a rough week. I can't remember if I told you this, but I fell on my face coming in the door from church Sunday. I fell so hard that the door hit the wall and the handle put a hole in it. When I did, I hit my shoulder and it has been hurting like the dickens all week. I went to the PT on Tuesday and she thinks that I probably hurt my rotator cuff and it is going to take a while to heal. In the meantime, everytime I raise my arm it causes excruitiating pain. I am putting on essential oils, peppermint, and using a heating pad to alleviate some of the discomfort. It does help a little.

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.

Update

What is your cross to bear?


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.

Joy

When was the last time you experienced total unadulterated joy? The type of joy that radiates from your very pores and surrounds you with a rich and velvet satiny sheen. A palatable glow that can be observed by others and they can not only SEE your joy, but actually feel your glee, your merriment, your total and complete elation for this day oozing into them. Or maybe its just for this moment, but it is here, it can be sensed and experienced. Its become an aura that surrounds you and its glow rubs on to all those around you and permeates their pores and then they catch the joy. And it spreads and proliferates and moves and twirls and surrrounds all those near it. Joy. Pure joy. It is a rare thing, this joy of ours, and it can only come from within us and is given to us by God. He hastens to place it there in times of dire need, when all else is failing in your life He gives you joy. And when you get it, it should be shared with everyone you come in contact with since it is such a rare and exquisite commodity.

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.

So tired.

I continue to get increasingly fatigued. I keep thinking that I will wake up one morning and just feel like my old self again, but it ain't happenen. The other day I slept all day, woke up for two hours and went back to sleep until the next day. Its weird. I am such an energetic person that this lack of vivacity is puzzling. My mom reminded me today all that my body has gone through in the last week, heck, the last two years, and it is probably just worn out from the barrage of chemicals and then the brain "surgery" on top of it all. I remember back over five years ago when I was having daily radiation on my breast site. By the end of 36 doses I was so tired it was overwhelming. Radiation does odd things to the body, fatigue being one of them. My friend Sherri was also doing radiation at the same time back then and I remember her calling me because she was at the store and had to make a decision and was too tired to make either a rational or irrational decision. She couldn't decide on anything. She knew I would understand. When you are doing radiation the brain simply doesn't work right. There is this fog, this mist that coats your brain and makes you unable to think clearly. I think of the high dose I received last week and I guess the incredible fatigue makes more sense when you put it all together like that. Not to mention, I have have two doses of Avastin, two doses of Tamadar and one does of Zomeda in the last two weeks. Not a minor hit to the body. So I am getting rest and waiting for it to pass. I didn't make exercise class on Thursday, my legs just wouldn't have supported me and last night we were supposed to go to a concert and Mike took one look at me and said no way, you'll never make it through the first five minutes! I had to agree, we'd get there and I'd fall asleep. It upset me, not only had he bought tickets but I thoroughly enjoy Tingstad and Rumble. They are one of my favorite duos. Oh well, they will be back, they come a couple of times per year, I'll still be around to see them again.

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!

Improving

I know its been a while since I blogged and for that I apologize. But it has been a rough week following the GammaKnife procedure. My headaches have been terrible and my balance and weakness has gotten the best of me. I get rides to my various appointments, then come home and sleep most of the afternoon. The exhaustion and fatigue is overwhelming and I am doing the best I can to just put one foot in front of the other. My brother and his wife were up over the weekend and it was wonderful to see them, I was just so tired I wish I could have spent more time enjoying their company. But we got to have meals together and do a little shopping, which is always our favorite pasttimes!

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.

More Mini Seizures

I seem to be recovering except I lost control of my right side again today and collapsed on the floor in the bathroom. I went to step to the sink and my leg had been twitching so I should have known better and down I went. Then my right side went numb, my hand clenched and I couldn't straighten or use my hand, arm or leg. This happened twice yesterday only luckily I was seated so I could just move over to the bed and lay down until it passes. My arm didn't go numb yesterday it was just the uncontrollable shaking leg. The second time wasn't as bad as the first yesterday and today's was awful. I have a call into my nurse at Swedish to ask her what to do. Maybe there is more swelling than they anticipated and I need to up the amount of decadron I am taking. I'll just wait and see what the doctor says. Mom showed up right after I collapsed so she got me downstairs and into my lazyboy while it passes, which it has. Thank goodness. I just sit and wait for the next time, but pray there isn't another one!

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.

It was awful but its over!

Well I am home and the procudure is done, thank God. It was much more uncomfortable than was represented to me. It was awful when they bolted the halo to my head. It hurt, alot, even with the versette and the topical anesthesia. It hurt. Bad. Mike held my hand and I am suprised that I didn't break his fingers while they drilled into my head. Once affixed to my head I spend the next 6 hours with this 3-1/2 pound halo on my head. Discomfortort doesn't adequately describe what it felt like. When they bolted the halo into the CT it hurt really bad. The halo had to be bolted into the CT so evertime they worked to get the bolts to slide in correctly the tears just ran down my face and then I spend the next 45 minutes with my head bolted inside a CT. Once done, I was unbolted moved to a room where I waited out the planning. Since the one bad tumor is so spread out it took better than 90 minutes to plan and they wanted it to be planned perfectly which I appreciate. But in the meantime I sat in a chair for hours with this weight bolted to my head, the headache almost unbearable.

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.

Patty

Ready and raring to go!

Well we are in Seattle. The drive wasn't bad, the pass was foggy but clear. The hardest thing is finding the hospital and the right garage, the one that is for patients, is only $10 per 24 hours and can be validated for $10 so we won't have to pay anything. Our room is a converted hospital room, which is evident, but it is clean and convenient and inexpensive. Its only $70 per night, single beds, but I haven't had to leave the hospital once I got here. We found the right garage, we found the inn (which reception closes at 4pm so we had to go back down to patient registration to get the keys, would have been nice to know that ahead of time. This hospital is not good on disseminating information to its patients. We had a great housekeeper who got us where we needed to go, personally led us to the Inn, back to registration, back to the Inn. Make sure we had towels and soap, showed us where the Dining Room was, what time it closed, etc. She was awesome. But the person who registered me for the room should have given me all that information, would have saved all of us some time.

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.