Everyday I seem to be feeling a little bit better, a little bit more “normal” for me. I don’t think anyone can explain what happened to my body. It feels so good to be getting myself back. And now I get a month. I am so grateful for this month to come. (knock on wood) No scans, no treatments, just building my strength, stamina and healing. It feels like a gift.

Last night, to celebrate Father’s Day, we had a pizza party with our neighbors. It was our smallest pizza party, just the neighbors and Lizzie’s brother and us, including Betty and Eva. I probably said this long ago, but the pizza oven was Vince’s response to my cancer. We had been talking about the oven for at least a year; debating size and location and design. When I was diagnosed, in my mind the next time I saw Vince he said, “We’re building the pizza oven.” And so “we” (really he) did! And I think back on all the pizza parties we’ve had and sometimes there are lots of people and sometimes it’s too cold and rainy and sometimes I just felt like crap. Last night was the first pizza party I can recall that I actually felt good. It was the first time in a long time I built a pizza (roasted eggplant, roasted garlic, goat cheese and fresh tomatoes...yum!) and it was the first time ever I actually cooked a pizza in the oven, and I did it twice! I even enjoyed a glass of wine~kind of a big glass, too!  Now there is a testimony! It feels so good to feel good. And I certainly don’t want to jinx it, but I certainly do want to live it, mark it, savor it be here for every minute of it! It is something I am not taking for granted these days.

Executive function is returning…I’m even planning! Mike and I are filling in the details to the outline of our trip back east and it is looking to be a good one. We are splurging a bit, thinking this dark hole has earned us some bonus points! I’m really starting to look forward to getting away, seeing our friends out there, traveling with Mike, being a tourist. A couple of weeks ago I couldn't see how we would pull it off. Now it makes me very happy to think about it!

Mike and the kids are in their last week of school. It is painful to go to school so late, all the way to the solstice, when it is light so very late and the kids are so ready for summer. Every teacher and kid I know is more than ready to be done. I’ll be going in to help clean up and pack up my room. It will be a challenge as I have not made a decision about next year. I’ll do what has to be done for now, then go back after my scan and decision in July.

Enjoy the light, the solstice.

Thank you for your support through the dark.

Lots of love

Janet

I knew it wasn’t cancer!

Just arthritis; seems I’m getting old.

I’ll take that!

Love

Janet

I have many things on my mind these days. I’ll start with the fact that I really am feeling so much better and it seems to be noticeable each day. Baby steps, but forward marching.

I’m trying to get my butt moving to work out longer and harder, this is a huge challenge for me. I’ve got the dog thing down and do some hills and at least one set of stairs every morning and generally I am out there for 35 minutes, but now I need to kick that up. I went to Pilate's last Thursday night as I will each Thursday night that I can and that felt great! Had not seen my Pilate's friends since February! That feels like a huge accomplishment. About once a week I have Physical Therapy with the Anne Sullivan of Physical Therapists, Tricia, and she works me hard. I like it better when other people make me work. When it’s up to me….it’s a little pitiful!

But I’m gettin’ there! Today I plan to do some of my Pilate's core work on my own and get back to a few weights for these pitiful arms.

The residual negative experiences I am having I believe to be a lingering effect of opiate withdrawal. My lovely therapist (the one I dumped holy shit all over) did some research (probably therapeutic for her after being with me!!!) and told me that for some people the effects can last for months. The symptoms I described are all things she read about as possible side effects. For me, currently,  they include a variety of executive functions. For example, my sense of time and sequencing is just gone. My habit when I’m feeling bad and vulnerable and confused, since my cancer started, has been to write things down. As soon as I got on the heavy duty pain killers I started obsessively writing down every pill I took and at times I’d add reactions. I have this blog to help me remember and sometimes, when I can’t eat or sleep, I’ll document troubles and trials. I’ve been looking back through my blog and notes and am astounded by how many things I do not remember writing or experiencing. I looked back through some of my texts and have no memory of the conversation. 

Another struggle I have is with planning. We are in the midst of attempting to plan our trip to the East Coast next month and there were several attempts made by me to get the ball rolling; looking at airlines and calendars and schedules and I just couldn’t do it. I hit some kind of wall. I was overwhelmed and just knew I could not be a decision maker at that time. I did not have a clear enough head…that’s it…it was the fog, I could not see clearly enough to see all the moving parts or to make a decision. 

I’m a big planner. At work and at home, planning has always been a big part of what I do and actually enjoy. I think about the three and a half week camping trip I planned for our family for the summer of 2000. It involved  maps, schedules, reservations at Yosemite, the Grand Canyon, Mesa Verde and more. That was before you could do all those reservations on line, it was all by phone. That was no easy task! But I enjoyed doing it. Now there are times in a day when I am just not capable of using those executive functions!

I have a renewed and increased respect for all of those children (and there have been many!!!) whom I’ve worked with who have struggled with executive functioning. It is so frustrating to see other people apparently waltzing through life and inside my foggy head I can’t make heads or tails of how all this shit goes together. I just want to go hug those kids and tell them I get it; how frustrating it is to be in the fog.

And the final residual effect is nausea/lack of appetite/food doesn’t even sound good. How is that possible! How is it possible that food does not sound good. Every day at some point I feel nauseous. The last two days I decided to take an Ativan to see if that would help. It did. It helped a lot. Sunday morning I felt like crap most of the time and I was pissed about it. Why should I still feel like crap? I’ve had NO treatment since February. I haven’t had chemo in a year! I should feel normal. I took an Ativan about 1:00 and by 3:00 I felt great and felt fabulous the rest of the day! Woo Hoo!! Yesterday about noon that feeling came on and I took an Ativan right away and I felt great the rest of the day! Today, it is 11:30ish and so far so good...I'm feeling pretty "normal" for me, so far today.

I really am coming out of the darkness, through the fog and into the light. What a long road this has been…

Mike and I went to see Dr. Kaplan last week. He seemed impressed with the fights I've fought and the struggles I’ve been through. Called me tough. Gave me multiple hugs. We talked about all the tests I’d been through looking for the pain, finding nothing and then the pain disappearing after the endoscopy. He says it must have been caused by the radiation (though he has never seen anything like this before) and has no explanation for why the pain went away. So we get to make up stories about how the scope during the endoscopy nudged a nerve and took care of the pain. That is really the best I can do and then it doesn’t really matter. The truth is the pain is gone! So there you go!

During the MRI, ages ago it seems, there was a spot on my C5 vertebrae that they said “could not rule out metastasis” and to follow up at a later date with another closer look.  Dr. Kaplan said, it is highly unlikely to be anything and his advice was to just go on, get the zoomed in MRI, and rule it out. So that is what I am doing Thursday. I’m going in to make sure I have no cancer on my spine. In the meantime, 90% of me is in complete agreement with the good doctor that it is nothing. Then I have a tightness or a crick or a catch in my neck (like I always have had) and dive headfirst  into the river of extreme possibilities. I scramble out as quickly as I can. Dr. Kaplan will call me after the test and tell me it is nothing and then we’ll get back to exercising my executive functioning skills as I continue to attempt to plan our trip!

The next step will be the next scan. That is scheduled for after the East Coast. I’ll have a scan on July 21. That will be a big day and from there I’ll be able to start making decisions about next year. Until then…I am healing from cancer, from opiate withdrawal, from heart failure, from sadness and loss and grief. But, most importantly, I am healing.

One of my new healing helpers is one of Dr. Standish's student's Brianna. She is a gift. She is a lovely, skilled, heartfelt healer. She must be all of 25. Where does that come from? She has been giving me reflexology treatments and a sort of organic guided meditation at the same time. It is by far the most relaxing, healing treatment I have ever had. Friday I had a treatment and part of her guided imagery included a passage something like this....I will not be able to be as lovely or eloquent, but I'll get the idea across: "Remember we are all connected; we are all part of the earth. Just like the earth can heal itself, your body can do the same." I immediately thought about Mt. St. Helen's. After the volcano they monitored the rebirth of the mountain. I remember watching a program and the surprise of everyone at how quickly and efficiently the ecosystems were restoring themselves. As I thought of that, I immediately thought about my liver. Dear God, if Mt. St. Helen's can erupt like that and rebuild itself...surely my liver can do the same. I had never thought of that analogy and it opened up a new avenue of positive energy for me. That is not the only example of the positive thoughts and energy inspired by Brianna, just one example! I am blessed to have her on my healing team.

Another one of my healing helpers, Mark Nepo, spoke to me again this week. I just have to write the entire passage. It’s a short one. From The Book of Awakening, by Mark Nepo:

                                                                             June 13 

                                                                       Against Our Will

                                                      As an inlet cannot close itself to the sea that

                                                      shapes it, the heart can only wear itself open.

One of the hardest blessings to accept about the heart is that in the image of life itself, it will not stop emerging through experience. No matter how we try to preserve or relive what has already happened, the heart will not stop being shaped.

This is a magnificent key to health; that, despite our resistance to accept that what we’ve lost is behind us, despite our need at times to stitch our wounds closed by reliving them, and despite our heroic efforts to preserve whatever is precious, despite all our attempts to stop the flow of life, the heart knows better. It knows that the only way to truly remember or stay whole is to take the best and worst into its tissue.

Despite all our intentions not to be hurt again, the heart keeps us going by moving us ever forward into health. Though we walk around thinking we can direct it, our heart is endlessly shaped like the land, often against our will.

Mark Nepo’s message once again…the only way to stay whole is to take the best and worst into its tissue. Powerful. I am ever grateful to Janelle for giving me this book while I was in the hospital in September of 2014. Thank you Janelle. You help me in this way every day!

As I dig my way out of this hell hole I have been in I am so grateful to so many of you. On the front line,  Mike, Betty, Michael, Maggie, Eva, thank you for letting me cry for no apparent reason. Thank you for answering my repeated queries because I didn’t remember asking the first time. Thank you for all your care. Thank you also to my regular emailing/texting group. There are many of you and your texts and emails light up my day; make me smile and cry. Thank you. Thank you Lizzie and Vince for bringing that ray of sunshine, June into our world. Thank you Roz for our lunches and your love. The other day at one of Mike's work parties I learned that I have quite a few folks reading that I didn’t really realize were still out there checking in on me. I shouldn’t be surprised…you have fabulous Mike in your life and you realize this has been a life-changer for him. I am humbled. Thank you for your continuing love and support. Thank you Jimmie for the Hot Fudge Sundae and all the love.

There are so many more…I shouldn’t start to name names; I thank you all.

I am swiftly approaching my 2nd cancerversary. I have been very melancholy lately; reading back over some of my first entries into the blog and then going back further and thinking about when I first met Mike and when the kids were young. But I’m also feeling proud to still be here. I’ve been fighting hard. But that is no guarantee of success in this business.

You might recall I have 2 stomach cancer friends in Seattle. I met Gaby first, we actually had several friends in common from different communities. Then I met Charlene on the Debbie’s Dream Stomach Cancer Website. Gaby and Charlene and I got together a number of times, emailed somewhat regularly and even got together with our husbands once last year. All three of us have very different stomach cancers, different treatments, different doctors, hospitals, different outcomes. Charlene was the most recently diagnosed, shortly after I was. I am so, so, sorry to say she passed away last Friday. She was a strong fighter, too. She loved her work and worked up until shortly before she got so very sick. She was just a little older than me and has a strong and big family and church community. Cancer doesn’t care who you are, how much money you have, how positive your attitude is, or how hard you fight. Sometimes it’s just gonna take you down.

So yes, I’ve had a lot on my mind. Thank you all for reading my words and being here for us.

Love, Courage, Strength and Hope to us all

Janet

Soon after I started my blog I discovered many other cancer blogs. There are a lot of them out there.There was one young man in his 20's. He was a private person and his blog was anonymous. He was keeping his cancer to himself at work and with most of his family. It made me very sad for him. He did not seem to have very much support. I wanted to crawl through the computer and do something. I commented on his blog but right about that time he took a turn, went into the hospital  and that was his last post. I checked his blog so many times, I still check it on occasion.

I found a blog by a woman who had started a public blog, like mine, for her friends and relatives and quickly decided she needed to shut that blog down and start an anonymous blog. She found that she was sugar coating things too much. I can understand that.

I know that I have sugar coated things a bit. Why would I want everyone to know my deepest darkest fears? Everyone has their own and I'm sure with the slightest bit of imagination you can imagine mine. It's not a good use of time. 

But I am here to confess of unintentional sugar coating. That detox shit. It wasn’t over and it was way worse than my last post reflected. For all I know, it’s still not over. I’m not completely sure, I do know that it was still bad at my last post and I think I was trying to fake it until I could make it!

There was a full week of physical shit. Jittery legs, impossible to be comfortable in my own skin, day or night. Nauseous at some level most of the time. So, very little sleep. At my last writing I think I thought it was coming to an end. That was wishful thinking. The physical side is still here at times, especially at night. I’m not back to being able to sleep quite yet. Last night, for example I was awake every hour, I would doze, then wake up. Many nights I spend in different rooms in the house hoping for the miracle of sleep. I took Ambien one night and fell asleep but woke up for several hours in the middle of the night. 

The second week was what I will call the week of the dementors. I feel like Harry Potter’s dementors came and sucked my soul. I felt like a hollow shell. No energy. No desire. No motivation. I cried a lot; long and hard, short and sweet, buckets of tears. I go to a counselor these days and usually I am a mix of emotions with her. We laugh and cry, both. That week I sat in her office and cried for the better part of the hour. I just dumped holy shit all over her. I’m still crying more than usual. Like right now, for example.

I’ve lost track of when I went off the pain meds 2 weeks? 3 weeks? I can’t keep track. And I feel like those weeks were so very foggy. I want a do-over for so many things. Lucy, you have to come back for a do-over, cause I can hardly remember you being here. I need a do-over for Jennifer’s day of visiting and Lou’s run, just last Friday. Blur, blur, blur. It’s all in a fog.

But, now I think I’m really starting to get better. Yesterday morning before I opened my eyes I felt different. Better. One of those days when I had moments of feeling normal. I’ve been working to feel better. I am proactively seeking better. I am going to Physical Therapy with my miracle worker PT, Tricia. She is helping me get strong and pain free. I’m going to massage therapy with Sue, just down the street every week or two when I can get in to see her. I went to acupuncture, but it didn’t settle quite right, but I tried! I’m doing all the magic that Dr. Standish prescribed. I’m walking Wilson a little harder, a little farther every day. I’m using Ellen at 3:00 to do some floor work at home and even started using some light weights (thanks for the nudge, Maggie). I’m trying to eat healthy. I’m still not drinking much to speak of (a couple of beers here or there). So I damn sure should be feeling better. But what a slog, what a fucking slog.

So, there, no sugar coating this time.

I see Dr. Kaplan on Thursday and I’m looking forward to that. Recently in email he’s commented that we wouldn’t scan for awhile since all those tests for my pain came back clear. I hope he is still thinking that way. Last we time we peeked at the liver the tumors were shrinking and I am of the belief that they are continuing to shrink.

I want summer. 

I want to be strong again. 

I want to feel stamina and vitality.  

Yesterday morning, one of those moments when I literally said to myself “I feel normal.” I stepped outside and there was a beautiful monarch butterfly right in front of me. I took that as a good sign.

Thank you for listening and for being here for me.

Love 

Janet