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.