Clueless?

I have to admit it, I'm scared. I was hoping that Swedish would call today and give me some pre-procedure instructions and I finally called them and I have to say they weren't very helpful. No food or drink after midnight, as I suspected, but were they going to tell me that? They were also telling me that they will be giving me 1mg of ativan to keep me calm. A miligram of ativan? I take ativan every 4 hours to prevent seizures and nausea along with a whole host of other narcotics. One mg of ativan won't even take the edge off. I asked her if anyone had reviewed my file or medlist, and she said they would. She also asked if I have a medi-port, which I told her I did, she asked if I had a brochure so their IV team would know about it and how to access it. THEY DON'T KNOW HOW TO ACCESS A MEDIPORT?? Holy crap, what kind of hospital is this? I can't imagine a hospital who does this procedure all the time not knowing how to access my mediport. Swedish Neurosciences is supposed to be a premier and elite institution, this is basic cancer treatment stuff, we all have ports. I just hope I was talking to an ignorant nurse who doesn't understand how things work and doesn't know what she is talking about. But my conversation with her did not instill any confidence in me that they can do this procedure and all it entails. Mike and I are going to call again tomorrow on our way to Seattle and see if we can talk to someone who knows a little bit more and can fortify my defenses. I'm feeling rather frightened and unsure of the procedure. I know its the right thing to do, and I am sure that they will do a fine job, but they probably need to put someone else on the phone with the patients. She was really nice, but made more questions than provided answers.

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.

Weak and Tired

I am feeling very week and trembly today. I worry that a seizure is on the horizon so I am keeping my beeper close around my neck just in case. I am on so much seizure medication that I can't imagine actually having one, but I am erring on the cautious side just in case, using my cane. I just remember back to a few weeks ago and how incredibly horrifying it was. The most terrifying thing I have ever experienced. I thought I might die. So, I'm awful glad to be here still!

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!

Cold

I really wanted to go to chuch today, have one more blessing put around me before the procedure on Wednesday. However, this cold I have been battling has settled in to my head good and I awoke this morning all stuffed up, coughing up gunk, sore throat, burning eyes. I thought it would be better if I stayed out of the public since there is so much going around and try to get healthy. I dug out my echinicia and am taking them along with my other regular vitamins and am drinking copious amounts of fluids. I'll probably try to sleep most the afternoon. I don't know if a cold will affect my ability to have this procedure, but I'm not taking any chances, I'm going to do everything I can to get well and get well soon.

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!

Spinal looks clear!

The spinal tap went well yesterday and I am finally up and around. I got a call and the preliminary results show that there are no cancer cells in the spinal fluid. We won't know until Monday for sure when the final results are in, but I'm going with the news today; no cancer in the spinal fluid! Yea! I've been staying pretty flat on my back recovering but now I feel like I'm coming down with a cold, my throat is sore and my nose is running. I am fighting a headache, which is to be expected, and taking my meds as frequently as I can.

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!

Gammaknife

Alot to update all of you on. It was a very long day to Seattle and back and the pass was awful But we made it home about 11p. But let's start in the middle with the doctors.

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.

Swedish

Well Mike and I are off to Seattle tomorrow for consults with two physicians from the Swedish Neuroscience Center. I couldn't take chemo today because apparently I have to be off the Avastin for 4-6 weeks prior to having Cyberknife. I keep doing the Temodar and finished that last pill today. It frightens me to not take the chemo. I see how much growth can happen in such a short time and the incredible affect it has on my body and worry what will happen the weeks that I am off the chemo. But we will talk about that tomorrow too. Is it safe for me to be without treatment for 4-6 weeks? I believe I will continue the Temodor in two weeks so at least that is something fighting the tumors. They have taken me off the Abrastine which means my body is left open with nothing to fight back if there are any little cancer cells roaming around. I must use positive additude to keep them away. Its hard to stay positive. I am working very hard to keep my chin up and know and truly believe with a real sense of joy in my heart but most of all to trust in God and all the prayers that are going up for me. I know God is listening and He won't leave me to face this alone, He will be with me every step of the way and I know my family and prayer warriors are out there pounding out the prayers of healing and hope.

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,
Patty

Seattle on Tuesday. Pray I can have Cyberknife!

I have started on my new chemo pill which I picked up from the pharmacy yesterday. It is very expensive, $1400 for 10 pills. I will take them for 5 days, 2 weeks off and then 5 more days. I am going to talk to Dr. Rado's office to see if I can get them through their office and have it billed under my medical rather than my pharmaceutical coverage. If I can get it under medical it will be covered 20% and I am almost to 100% coverage. If it stays under my pharmacy coverage I will pay $1400 forever for it, there is no stop loss. But I guess if it works, its worth it.

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.