Shake it up!

Living with ups and downs! I have to say there have been ups and downs. On a positive note, I saw the pain service and they were thrilled with my progress and believe the Cyberknife is helping me and my pain issues. My pain has gotten dramatically better. I have started decreasing some of my meds! Yeah! So we have some victories to celebrate!! I am hoping that by removing some of these meds I may be relieved of some side effects!

On the flip side I have been experiencing "the shakes" actually pretty violent shakes on and off for the past week and a half. It happens only at night. I get cold and shake, shake shake. Then I spike a fever. It rises up to 101.5 then lots of sweating back down to normal. Makes for a scary night and exhausting. I have learned however that it could be the tumor dying off. And that all the shaking is related to the dying of the tumor cells. So it could be a good thing but a rough road. So I have to prepare myself and my mom for those shaky nights.

Thank you all for your continued support! I feel it coming through! I can do this. 4 more Cyberknife sessions to go. Then on August 6th I start my chemotherapy once every 3 weeks. This cancer us getting blasted!



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We're on the road to nowhere, I mean somewhere!

Not sure what to write. I am tired and feel a little stuck. where is my next road? Where do I turn next? I feel like I am at a fork in the road. Like Fozzie and Kermie as they're, "movin' right along". The first road I am taking is adding on 3 more days of Cyberknife. The doctor recommended I add on 3 more days for maximum treatment. So I agreed to this new road, keeping me away from home until, August, 1st. I also felt a lump in my clavicle lymph area and shared this with my cyberknife doctor. He was concerned and encouraged me to share this with my oncology doctor and start a systemic chemotherapy as soon as Cyberknife was finished. The systemic chemotherapy was always a part of the plan but it wasn't in the near future. Luckily the medicine is a dose that is supposedly "light". So maybe it will be like driving the Oregon coast, not real warm but has pretty views.

Schedule for Rides to Treatment

Thank you all who volunteered your time to help me. Here is the list. I am still short a couple rides. If you know anyone who may be interested in helping send them my way. Many blessings. Alexis

Tuesday July 17th ride from Bothell to swedish cherry hill at 1:45. My appt is at 2:30 pm then I need a ride back to Bothell around 3:30.

Wednesday, July 18 - Colleen M. Iwill give me a ride to Swedish Cherry hill.

Thursday, July 19th - Amanda S. will give me a ride from Bothell to Swedish Cherry Hill.

Friday, July 20- Dan P. Will give me a ride from Bothell at 2:45 to Swedish Cherry Hill, back up Jessica S.

Monday, July 23rd- Tracy W. will give me a ride from Bothell to Swedish.

Tuesday, July 24th I still need a ride from Bothell to Swedish cherry hill at 2:45

Wednesday, July 25th Kristi L will give me a ride from Swedish Cherry Hill.

So in summary I need some rides on July 17th and July 24th.
Let me know thank you!!
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Fiduciary placement

My fiducials have been placed. I am one step closer to Cyberknife treatment. I have come to like the word "Fiducial". A fiducial is a marker or placement. I forgot to ask if these markers are gold like the other ones. This was another routine experience prepping to be put out by a medical team I don't know. They were friendly but it still didn't kill the sting of not wanting to do another medical procedure. I felt my vulnerability peak when the nurse innocently asked, "so when did this all start for you?" I replied, " a little over three years ago." she responded, " oh you poor thing". The tears welled in my eyes. I felt sad and angry. I wanted her to stop talking about it. I wanted to be done dealing with all the procedures. The pain that tortured me every day. The rules like, waiting to eat, to drink and to take certain medications. On the way to the hospital I had to pee but I couldn't because it hurt. It was a new game of torture and pain. Dehydration was causing pain and I was feeling bad. I just wanted to stop playing by the rules. I wanted to feel better. My foot is numb with 3 blisters and leaking due to the overswelling in my foot.

My little guy is coming to see me tonight. I am excited and scared. I hope I have energy to be present for him. I hope l can love him fully despite my pain. I will do all I can to be there for him. I hope I can be present for my husband too. For his exhaustion from single parenting. There are multiple roles we are playing to keep it together. I just hope my son knows we do it for love. Someday he will know. To get to the bathroom on crutches is painful and a race against the bladder. Who will win? Me or my bladder. Here we go... I won.

All I can do is watch bad TV. I like the distraction. I want to avoid the pain. My boys are here. I love them so much. I here that angelic voice and smile ear to ear


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Pinball Wizard

I am the pinball wizard. How do I know this? I know it because whenever I try to type my hand shakes and jitter all over. I add letters and words and hit the send button way to early. I feel like I am playing pinball. In addition to my jitters, I get pain jolts down my right leg and into my foot, cling clang, double points, right. So I try to write the best I can on my phone. It drops and I push send, thankfully I can retrieve what I have written. I am out of control. I don't play a lot of pinball in real life. Using the crutches adds stress to my muscles. I feel a new lump in my lymph area in my neck. It could just be from using the crutches. Who knows? I am not that worried. I just let it roll on by. I wonder if my jitters are related to the cancer in my lower back that is near my nerves or my nerve medication? I am in Seattle right now and I have a plan for my treatment. It is moving fast, Tuesday I get my markers placed at Swedish under anesthesia via interventional radiology. Then on Wed or Thurs I am going to get a blood transfusion to up my hematocrit so I can feel a little more energized. On Friday, I will get a CT so my Doctor can make the Cyberknife plan. Then on the 17th I will start treatment. Cyberknife treatment will be daily for 7 days. It will be an hour each day. I will be done July 25th. Then after my treatment we will wait 6-8 weeks and I will get another PET/CT. Then my oncologist will start me on a low dose chemotherapy, that does not involve hair loss, once every three weeks. I hope this treatment will take my pinball wizardry jitters away. I hope I can walk again too. I want to be able to walk to the bathroom, not crawl. I want to go upstairs in my house. Most of all I want more energy to spend time with my son. I want to read him books but more than that I wish I could chase him in the park. I wish I could dance with him in the living room. I wish we could ride bikes together. I wish I could run with him and he could know that I used to run in races. That I ran half marathons. I want him to see me as athletic but he doesn't know me that way at least not now. I want him to see me training for a triathlon. He won't any time soon. I know I am moping over my losses. "they" say to focus on your wins not your losses. He loves me just the way I am but I know he wants me to chase him and pretend I am a race car. I so want to be physical with him but I can't. I am restricted in what I can do. Alright enough of my woes! The positive piece is that my treatment is starting soon. The potential for change is there. The hope is there. The love is there. The faith is there. The prayers are there. And my you are there with me.

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One minute at a time.

As the sun shines, I am watching the people walk by my open window. Listening to the college kids play croquet in their yard across the street. I am confined to the uncomfortable seat of my couch. A short lumpy couch that doesn't allow me to straighten out even if i do straighten out the pain increases. It is a no win situation. I feel stuck. I feel the cancer controlling my body especially my legs. My left upper thigh throbs and rips as the day ends. My right foot buzzes a numb sensation as the day progresses. I am waiting my turn. I am waiting for the approval of my insurance to give the treatment I need. I need the insurance to approve the cyber knife so things can move forward. My pain is progressing. Everyday I am holding my breath feeling the pain shoot up my back and down my thighs and calfs, and into my right foot. I take pain medicine all day and all night. I drift off and on all day and try to sleep at night. Sometimes the pain is so intense that there is nothing to relieve the pain. I use crutches to get around and wobble with uncertainty. My legs are filled with edema. My body has been messed with so many times that my lymph system doesn't work well. So my legs are swollen and not interested in deflating. I feel heavy and awkward. I have gained weight. However the weight I have gained is mostly in my legs. I am stuck and I can't do much. I am teary often because of pain and my lack of ability to do much. I am scared. The pain is real and ever present. I just want the pain to end. I am ready for the next step in my life. I want to feel freedom from the pain. I want to know what I can do. I see the apple tree branches blowing in the wind, effortlessly dancing. How can I be the dancing apple tree branches while I am in chronic pain that is seldom relieved?
How can I turn my attitude around? The pain keeps me contracted. My body is tight, my face and my emotions are bound. I want a release from this state. The pain is so present that I can't imagine touching it in any way shape or form to relieve it. Please Lord give me strength and grace to move through this pain. Please let this pain be temporary. I pray for strength. I pray for peace. I pray for change. I know this may sound depressing or sad, it just is what it is.





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