Well I am back at it after yesterdays appointment with Dr. Zuckerman. I’m not going to lie, I was pretty worried because the tumor on my belly has grown so rapidly and I thought maybe everything inside was growing at the same pace. I had prepared myself to hear the words, “Things have really grown Crystal, it’s time to try some chemo.” I had also wondered how Joel would respond if the news wasn’t so great even though he is always so strong for me. In walked Dr. Z and imagine my surprise when the first thing he said was “Well everything on your scan looks stable except one area that has grown rapidly, is your ostomy in the lower left quadrant?” Of course I replied “yes” and he said that he had spoken to Dr. Perez who had also seen the scan and was willing to take a look at the tumor and see if he could remove it. He wasn’t confident he could get the whole thing but he thinks he can at least remove the portion that is above the skin that causes me the pain and ugliness. I felt both relieved and nervous about the procedure. After we had that out of the way we began our talk about my trip to Seattle. He sounded open about my trip and I began to share with him the ideas that Dr. Chen in Seattle had suggested. I mentioned HYPAC and he was blown away, he said, “That is a huge surgery and very invasive!” I agreed that would be later down the road. I told him of the plan of low dose Carbo/Taxol, he had some of the same concerns as I did with the idea that I had tried this type of chemo before without measurable success. I had to remind myself that during that time I was also being told to eat ice cream and cheese burgers because I was losing too much weight and doing it in high dose every 3 weeks. I do have some of those same fears of trying it and torturing myself if it isn’t going to make a difference, however I have to be confident that Dr. Chen sees much more cases of this than my small story. Anyway Dr. Z said that weekly low dose is in many trials in Japan right now and they are seeing some result but it’s hard to say yet if the long term results will be enough to make it worth it. He seemed on board to consider following the Seattle protocol, then I handed him the sheet with the dosage on it. His response was wide eyed. He said “Wow, these are INCREDIBLY low dose, like almost homeopathic doses.” He said that he had concerns that this may not be strong enough doses to do anything. My response to that was “I would like to try it and if we don’t get the results we are hoping for than we can always try a different approach.” He seemed ok with that and said “It sure can’t hurt and I know you will be able to tolerate it.” He did say that he would like to consider upping the dose as time went on and I said we could cross that bridge wen we get there. Then I moved on to mentioned High dose Vitamin C and Iscador he wasn’t impressed. He told me that it sure wouldn’t hurt anything. I then asked him why he didn’t do it and he boldly responded with “Because I don’t believe in it. I am proudly a part of the medical community, that’s what I wanted and why I chose to go to medical school. However I am also open minded enough to say that we might be wrong. You are the proof of that. You have been off chemo for over 2 years and you are alive, I can’t explain that.” In my head I kind of smiled and thought “Not only alive, but stable.” I was impressed with his ability to be so honest. I can appreciate the fact that he can look me in the eye and say, I’m sorry that’s just not my thing, but I am not saying you couldn’t or shouldn’t try it. I appreciated the honesty but know in my heart that he is missing out on some amazing opportunities to impact peoples lives with more than just painful drugs. With all of that said he told me to see Dr. Perez next week and schedule surgery(if I’m going to have it) before I start any kind of treatment. Joel and I left there both quiet and holding hands. Once we got outside I looked at him and said “Stable!” I could feel my whole body drop from this tight, high place into the earth below me. He grabbed me and squeezed me tight. I could tell he was so relieved to hear it too and I was so glad he was there with me. We walked to the car, both with big smiles on our faces.

We had a few errands to do, called the mom squads and then enjoyed an amazing lunch with Mark G. and Stephanie of Aqua Cuisine. It is always good to see Mark as he is such a light. He always helps me forget my situation for just a minute and LAUGH. We couldn’t stay long as we had a couple quick stops to make in Garden valley before heading back to McCall for a date. Joel had set up appointments with a couple of fire crews in Garden Valley and wanted to touch base face to face before the openings closed. He is hopeful that maybe he can be closer this summer and that would be an amazing opportunity. It was a random find on the internet that he even knew of the opening. I am praying that this will work out so that he can be closer to us this summer. The meeting seemed to go well and we rushed back to McCall a few minutes late for our massages at Shore Lodge. I thought a nice relaxing massage and to lounge in the pool area would be a nice end to a hectic day. We got settled quickly into our massage tables and our therapist started in. Joel got a very nice relaxing massage but I got Judy(who I wanted because she is very healing by reputation) she started in and warned me right away that she wasn’t going to give me “vintage” massage that I needed deep tissue and lots of release. I was up for anything and she began the deepest, most intense massage I have ever had. It was amazing and powerful and PAINFUL at times. I found myself having to breathe through the intense moments and then feeling the release. She worked on my scar tissue and released my hips and arms, neck and shoulders. It was different than anything I had ever experienced. She is an incredible, classy, talented therapist but I will know next time that it is not necessarily “relaxing.” She pulled back the sheets to massage my stomach, which I had never had done before. At first I could feel my self tense up because I knew she was going to see my scar and my ostomy but she put me at such ease the whole time. She asked if she needed to avoid “it” and asked what it was. When I told her it was a colostomy she didn’t seem bothered in the slightest. I told her that it was fine and she ran her hot stones and healing hands all over my belly and scar. I felt free for the first time with a stranger touching my scar. She asked if I had a pacemaker when she felt my port and I explained that it was a porta-cath and had been there for over 2 years and wasn’t tender. She told me that I needed to release the reigns a bit and trust God more. She said my tension was binding up my arms. I felt the tears start to fall from my eyes. How does this woman who doesn’t know me know that about me? She also told me that “It is hard to release the tension when you have been dealt such a crappy hand of poker.” She warned me that I might be a bit sore the next few days but that it would settle and I would feel better. She also cleansed my ora which I have never had done before. We left the room and sat relaxing in the pool room for another hour or so and then Joel went to steam and I read my devotionals for a bit longer and relaxed. It was just what I needed. I read about fear and healing mostly. We were finally ready to go and Joel treated me to a wonderful sushi dinner before we headed home to enjoy our last night together before he headed back to Whitefhish. Joel worked on his resume’ and I fell asleep in front of the fire. I love laying there, feeling the warmth on my bones. Joel left this morning and I am not exactly sure of the next time I will see him. I guess it depends on what happens with surgery/treatment but I would like to try to get back up there in February. I can’t imagine my life without him. He keeps me accountable and focused.

Today I feel a little anxious about the possible surgery. I want this thing removed but I have questions like, How long will I be out of work, do I have enough PTO? and is it going to be miserable or just a small surgery?, could he maybe hook things back up while he’s inside there??? I would love that more than anything but am afraid to get my hopes up. I’m trying to take one day at a time and as my cousin Michelle’s painting says…Just Breathe…

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