And so the music begins

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My new partner in the bike shop I finally was able to get off the ground this year after a 2 year hiatus just left the house.  He had come last night with his girlfriend to help me can the first run of peaches. Texting me last night, he wanted to know if I was headed out on the Harley, like we have done often this summer in the evening.  I told him I was still 3 boxes, and about 20 pounds into my evening, and shouldn’t go.  He replied and said he’d shorten his “attitude change” and be up, because he was excited to help more.  I smiled at this, seeing both of them enjoying learning a hobby I had picked up years before I met Amy, and still hold dear to do every year.  It was also a surprise, as I learn more and more about 2 who are quickly becoming very close friends.  The can of peaches I gave them the night before probably sealed the deal for them to want to learn how to do this themselves.  Now I have someone who has a family tomato sauce recipe, and I have the hobby of canning.  We aren’t going to just have bikes to build and sell as something to do.  It looks like we are going to be busy doing something from our youth which will make us both proud.

In between pressure cooking the jars, I am sitting here trying to sort out the email notices, the joint online accounts and receipts, and the many online things which I didn’t want to sit inside and do while summer was here.  I came upon the email  bill on the year subscription of this blog, and signed in for a few reasons. One was to read some of it a little, and the other was to close it down.  I haven’t been back on this since I wrote the final update,  and as the summer has rolled on I have become mixed as to whether I even appreciate that this blog exists. I am not going to elaborate on it, and I know it leaves many questions.  I don’t say these words out of anger. I say them based more on asking God if the writings here were too much of the experience shared that Amy and I had, and eventually, The experience I had.   Or, if the real question is……..  was it just not enough of it to really let people understand the entire picture of the events which occurred over the last 19 months?  The truth is, my answer to that tonight as I get ready to close this is pretty simple.  It actually became my evening devotion.

When Amy and I decided to get married, she had closed her Facebook account, due to a long list of reasons.  One weekend, while we were working on the wedding favors, I asked her to go into my account and close it too.  I am kind of lost when it comes to doing the computer things.  For 5 years, we set forth with our own goal, working pretty relentlessly to seize the gardening, the self sufficiency, building our own home, etc… and didn’t think much about the removal of the social media.  We both kept writing, as I have found many of hers over these past few months, and kept up with close friends, our church, etc..

Then tragedy struck, and in hesitation, we both thought overnight on our own whether to allow the you care to be opened up.  Amy and I agreed in the end ultimately the answer was the witness of God would be the single motivation for it.  Although some days I feel mixed while now alone and encountering different people, I do go back to the reason we continued the blog.  Reading her updates I can see she did remain very true to the idea of being a witness. Breaking from our security of privacy, which if anyone close to Amy would know, was one of the things about her she always held dear.  It made me smile this evening to re read her updates, for the last time.  Don’t worry, I am having someone back them up to a computer somewhere.  I guess I’ll have to figure out how to do all those things sometime, or in time…  he he.

One day, a few months before her death, I was sitting on the bed in my work clothes. She  was awake reading her kindle.  I made it a habit to drink my coffee late morning with her, and she made it a habit to at least wake up early enough to be awake when I came in. Even if that meant not “getting up.”  Most times, I spent it making her laugh. It motivated her to get up and move about the treehouse for a little while.  One morning though, she looked at me and asked, “Nate, what are you gonna do?”  I thought for a moment, and I recalled telling her what I was going to do, way back, at the beginning. She was more than likely carrying the idea in her head as my words set in stone.  I knew I would have to elaborate soon, as she was declining, and so began her and I discussing what I was “going to do.”  Before she passed away, she had not only a good idea of my thoughts, but also one of the biggest influences of my life was able to “weigh in.”  I elaborated my plan.  I saw it made her smile a bit when I mentioned what my original thought to her after the babies passing, her diagnosis, really meant.   In the end of us speaking on it, she merely said, “you had better go and do what makes you happy, no matter where it takes you, or what you choose.”   Anyone who knows me, even way back in high school, knows I constantly had a guitar in my hand. What better time to push forward with an idea which had been eternal since I was about 11.

A month after she passed, my father was able to upgrade my phone, which had maxed out the memory due to the pics and videos of the twins.  Turning on the I cloud drive to get the info restored, an iTunes playlist came in which Amy had made over the past months.  One album struck me as unusual.  “Wander this world” was the name, and the artist was someone we both didn’t listen to often.  I began to listen, and thought it was rather ironic it popped up on my phone when it did.  The reason is, my own music had begun to come out.  You see, I write while buried in emotion. I need emotion to make the songs, the stories, the book.  It doesn’t have to be sadness, it only has to be emotion which I am connected to.  I have survived death a few times myself, with my songs following close behind it.  The music I am writing now seems to be stronger than ever. This time, I am following it along with the book I am working on.  I am actually going to “wander this world” a little too, seeking places to make the music, finish the book, and pull the peace which will come from the new experiences.  Recently, a few days Harley ride in the mountains made me longing for more, and the pics are awesome.  There are songs of the children, and songs of the experiences, new and old,  I am going to share too.

I re opened my Facebook profile after Amy passed, knowing I was going to continue the music, like the service was for her.  My Facebook page is pretty blank, and will Hardly be a personal outlet, as everyone knows. Even Led Zeppelin sings, “good times, bad times, you know I’ve had my share.” I’d  rather channel it all to music and writing. Just my personal preference.

I will link people to a blog I started that has songs, pictures, and writings being put up as I travel to Nashville, Cali, the plains, Grand Canyon etc…. The songs are the “bootleg” versions so to speak. what I do is I write the song, then find one of my close musician Friends to play with me, and I share a little when I post it. After deer season, I am going into a studio somewhere and all these friends who play with me will come when I finish recording the core of the songs, and there will certainly be an iTunes playlist available sometime soon, or cd, or whatever you call it. The stories behind the travels to get there will be on the blog.  And lastly, “miller hill” will remain a constant and a base for me for this time. The close friends who may be reading this know exactly what that means.  The decades old song, “Miller hill,” will be on the blog site soon too. Seeing my new friend seize the canning in smiles and enjoyment, and the children’s faces who came to help me pick, as we have done for so many years, makes the difference.  It helps make the music and the book.

I want to thank everyone for their prayers and their comments on this blog.  It carried us through the vulgar and disgusting world of cancer.  In all I have written above, I do want to say that cancer in all our lives isn’t over either.  I am spending time trying to help others deal with it whenever I see an oppurtunity as well.  If any one reading this has to deal with that storm cloud, at the very least, you should know I would be easy to find with the connection of the  blog and Facebook to help anyone who wants it, or needs it.  I am more than happy to help, and have some “experience” with it.   This will be my direct witness until the day I get to ride out of this world.

Heres the link to the blog:  https://comesatime.blog/

if you check it out this morning, it has one song, and 2 postings. The children’s songs are on their way very very soon, so check it again shortly. I need some help making it more chronological. (Tech savvy…..no, I am Wood savvy though!)

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My Facebook name is Nate Tyack.

Send a friend request if you’d like.  I’ll answer any and all of them.  you’ll get linked to the blog from there, where the bootleg music, the Harley rides and pictures of my travels will be there.

My Facebook page will become the “attitude cycles” page soon. So, you’ll see some very cool Harley’s being built, and even ones for sale. Just check it out as the months roll on, it will be really cool and exciting.

Not much else will occur on the Facebook page though, except a way to reach out to me if you are directly or indirectly dealing with cancer, and want or need someone. I have your back, as you had mine.

This original Goodness and Mercy blog will be relocated to the website, Therecomesatime.org shortly.  The site will include many pictures of the children, and of Amy holding them during the time we shared with them.

this blog will be closed when the website is completed.  Thank you to everyone for their fervent prayers during this time.

 

 

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I would like to tell you it was beautiful. I would like to tell you it was filled with the splendor of trumpets. Angels pouring down from above, carrying blankets of silk and the softness of clouds. Shafts of light pulling from above with the sucking sound of a waterfall yanking her from here. I would like to say it held all the power of Him, and there was peace. Would that make it easier to see? Would that make what I am to share lighter and more g rated for all your eyes? Would it change things? To reach that feeling, first you have to take a razor and scrape the lining of your heart. Make it raw and serrated. Make it bleed. Stay awake for 3 days until exhaustion takes you to a place where you can listen. When all that has happened, a small Voice, faint and real, heavy set in the silence, will be heard……… but first I want to just take everyone back a little.

After the calls and the cancellations, the words of no refunds or flights, hotels, etc…. reality began to set in for her. I watched as her emotions flowed back and forth between release of anxiety from her pain and anger for the pain keeping her from the list in her iPad of sights to see, canyons to explore, pillars of rock carved from God to marvel at. She snapped out, was angry, was moody at times. For 3 days it went on like this. I finally had had enough. “You can’t just be dwelling on this, Ames. It sucks, it really does, but you got to pull yourself up”. These words are easy to say, if you are healthy and strong to begin with. But when the fluid of your organs is pumping itself throughout the lining of your guts, and locking itself in the belly to no escape….. how can you? She settled in for the next 3 weeks, as the pain medication slowly increased. Lack of sleep. A little more each night. In that time, she had finally woke one morning and climbed on the couch. Finding her there at 3 am when I awoke to begin my day, she opened up her eyes and vividly said to me, “I am done with treatments.” For quite a few months, prior, she couldn’t have them due to the chemo destroying her. During the winter months, it had torn her uterus so badly and caused such heavy bleeding that she lost lots of blood. A cyst had formed, and was finally removed and ablated, stopping the daily loss of the clotting. This was her break from chemo. This was what she went through while she was supposed to let her blood levels recuperate for more treatment. There was no break, no reprieve for her to recover. Just replacing an oncologist for an obgyn for a few months. Near the end of March, I brought her to her oncologist for her appointment. By then, the abdomen had grown to the size it was when she carried our twins. Her pain was heavy. She would turn shades of pale and yellow. The oncologist looked at her and admitted her for a scan and for observation, thinking an obstruction in the bowels was beginning. Amy told him firmly that this was it. No more plans, no more chemo cocktails. Hospice was called. A social worker came down. Amy filled out info making sure they knew she didn’t want any excessive measures taken for her. She cried, she heaved back into the chair heavily. The doctor ordered a cat scan

The next day he came back with “great news”. She wasn’t obstructed. He felt she wouldn’t be for the remainder of her life. Then the day rolled on with promises of her release. It was dragged on and on, until I finally told them I was taking her whether they could get their crap together or not, before traffic began, and bring her home. They scrambled then, as a 6’5″ man with one ear and no smile told them to get busy as firmly as a thunderstorm. She came home with me and we settled in together, just cuddling for a while. I can feel it now as I write this. It was her weight that set me off to writing the next morning. I wrote this, or began to write this story…… and I insert it here for all to read because I am letting you see the last month of all this week to week. I don’t often share these writings. These are for her eyes only. You mustn’t judge or tell her I shared it. Just read it so you see that she was able to read small scribbling when she woke every day…………….then we will get back to business.

Weight

In the early morning, before all things wake. That’s when I find myself pulled to the knife of day. It has quickly become my favorite time. There is an eerie silence about it. I have felt it is now; the in between. For this brief hour I have reserved it to myself to keep it as the time when nothing has changed. In my mind, it is the beginning of just another day. She will wake soon, get her breakfast started. She will slowly wake and plan, whether it be the chores needed to be done, or a visit to a family or a friend. She will float through the day, crossing off all those many things on her list. When she’s done, she will come back. Her steps will be felt as they echo through the old boards of this building. The motions of the building all tied to each other with years of living. It’s a feeling as if it’s the house is a being unto itself. Breathing, heaving feeling the changing of the seasons and remaining as it always is. If I am asleep, I can feel it. If I am awake, my heart prepares itself for the moment the latch clicks, signaling we are back together for the evening. This is the time which no one knows, and no one ever will. It’s our time. We have done it for years, every evening and in some imagination in my mind I believe there are many who know us who must sit outside of our life and wonder in amazement what we do with that time. But they will never know. It’s no secret, it’s just beauty in all it’s enveloped sense. From sharing a meal, to reflecting on the day, to venting the frustrations of whatever may have been. To washing the day away in the evening and resting our bodies. All of it is an act of God, plain and simple. These things come as natural as ice in the late fall. They are not planned, not well though out. It is just life. The word life.

I feel her weight from 16 feet away as she lays in our bed. I awake some mornings and she is not there. She’s drifted away to the other room, or has risen to do something. It brings a quick flutter to my heart, a small drive of adrenaline hits me as I reach over. Then quickly subsides. I know she is here. In that brief hour before sunrises, I think of all these things. I sit very quiet and feel them lay on me like blankets of weight comforting and inviting layered in all the small things that we take for granted. Her presence is weight, and that weight is an anchor to me. No matter what, no matter when, or where, I believe in my heart that our Lord has made me this way, to feel these subtleties everyone neglects, or misses. Clearly it’s because they will never leave me. Even when the weight is physically gone, it will still be there. This is what makes the days come together. To make sure you wake up every morning so you don’t miss that time. So it doesn’t slip into a memory………………
Amy asked for her detailed scan a few days later. It was filled with information. The liver had innumerable tumors now, as did the lungs. Small ones yes, but innumerable. The spleen carried a mass. The pelvic area had enveloped the reproductive organs with a very large mass. Her lymph nodes were showing signs of tumors too. None were tested, but only because none needed to be. Fluid was shown in the abdomen. A lung was partially collapsed. The Ct scan was pages long, but could have been one sentence if the tech wanted to save a few dollars. It could have said, “you’re pretty screwed, so brace yourself for a ride.” Amy just said it was the concrete to seat her decision. We settled into hospice and began the new journey. She was getting some relief from some meds, and we ate at a few resteraunts. Her system was slowed, but working. For 2 weeks, she was fairly normal. She went north one Sunday herself and spent the day. Upon her return, she was so happy to have done the things she set out to do. But there was something else. She had some pain in her eyes. She told me all of it. Spilled it out. We met each other’s anger and we met in both our feelings of being upset. She lay on my shoulder and we talked. We determined what was best was to remain focused on us, on her, and the week’s to come. But we would remember the anger and deal with it when we could, when the feeling was there. We held the secret as promised until reinforcements would come. This was important to her. I knew it. But what was more important to her was what I could and could not do. Over our years together, many times she came to me with something broken. I would take it, and repair or replace it as necessary. I soldered wires for her, replaced tires, repaired garden fences, built stone walls, made compost for gardens, set up lights for her growing desires. But this one I couldn’t fix. It tears me that I couldn’t. So I try now, as the reinforcements take over, they need reinforcements too. I know my writing holds power, so many have said it. I promised her I would use it if I could. This is for her, and this is my last time I take part in this struggle; for her. Like Pilate, I must wash my hands of it. She didn’t hold me accountable for not being able at the time. In fact, we grew closer together. Sometimes, you have to know and feel that it’s not your cross to bear. This wasn’t. We had to remain focused, as finally a doctor was willing to share what he thought was her time left on earth. “You are in the last 2-4 months of your life and this disease, in my expert opinion, based on the scan, and the observation of you”. These words were heard the following Wednesday.

Over the next few weeks, Amy had declined physically in energy, and pain had increased. But her conversations lay as heavy as snow, and we talked and talked, and used the deepest sharpest words of love for each other. Every word out of our mouths were filled with adjectives for each other. We scrambled at her flower beds. Her desires were 2 things. See her flowers grow, and ride that Harley. She carries the strength of an entire regiment. She pressed forward, determined to do what she could. Her steps each day looked as if they were steps on wet sand. Each day the further she walked, the wetter the sand was, the more it slowed her. On Easter, I put her on the back of the Harley. She couldn’t ride herself, the pain killers and all… so we left and went through town, stopping for fuel. She looked at me and said, “it hurts too much, Nate, take me home.” We completed her quarter mile ride. It was her last. That evening, she fell into me. She sobbed and said out loud, “what more does cancer want? It took our intimacy, it took our trip, it took our dinners and meals, it took our time, and now it takes the happiness of the motorcycles.” My heart sinks now as it did when she spoke, and I see cloudiness in front of my eyes when I think on it. Her spirit had begun to shatter, and from here on out, was only a fraction of the spirit she had carried for all the years I knew her. She settled into the monotony of pain medication, stirred sleep. Routines every night of waking at 2 and going to the couch. Taking medication with food only to vomit it hours later. Chasing with more medication to keep it down. A visit once a week from hospice. Building a strong bond between her and the nurse who was so gracious to us. Slowly she grew more and more exhausted. I began to mess with her routine, trying to find a way to change it. Waking up at 3, I woke her at 4 for her Nausea medicine. I woke her again at 5 for her pain medicine. Sometimes it helped, sometimes it was the same. Her abdomen grew until it stretched, causing her to cry out. It brought her to levels near death and I scrambled to get her in for relief. We did. 2 times she had a needle stuck in and 2 gallons or more of fluid pulled from her. An appointment was made for a tube that was to help her by constantly draining her belly. I told her it would get her relief. It would make it so she may feel like moving around again, maybe riding. At this point, her thoughts were somewhat muddied. She looked at me and said, “that would be pretty good”. By this time, she had declined to eating only small amounts, or none at all. She lived on a few crackers, some small pieces of fish, morsels of her favorite meals I could make for her.

With her dear friend we went to Boston for her tube. She sat and waited, as we all wait. She filled out a new dnr and sat back and cried. “I am just done with all this, I want it over.” I leaned over and told her we could walk out right now, and I could get her home where a nurse would help us bring her into a comatose state of pain medicine, and it would be fine that way. I felt like the priest telling William Wallace if he only cried out mercy, it would be given. It hurts, it really hurts to be at this time and place. I told her we were here to try one last time for this relief so she could plant, and ride the bike. It would get better, it would relieve her. She agreed. She went in, and we waited for her all afternoon, no one came to me to get me. I went and looked for her, and entered doors that said authorized personnel only. When a man who is 6’5″ tall and has one ear asks where his wife is, people,listen. They brought me to her, and I saw she was awake and waiting, waiting for a doctor to come show her how the bag works. I told them I would remover her iv in minutes, and have her out in 10, ama. They scrambled, and someone stepped up and told us she could do what the doctor was going to. As we left the garage, I gave the attendant the last ticket from a pile of them we bought way back when chemo was in her path. It was ironic to use the very last one for the very last day. This was it, no more Boston for her. Exhausted, we went home. It was 10:00 when the doctor we were waiting for called me and said she was looking for her. I told her we had already left, 2 hours ago and waited long enough, and hung up. Amies pain increased, and her dosage increased that night. I hoped to see a change in her Wednesday.

The nurse came Wednesday and we met routinely. Plans for a Friday visit and a dressing change, etc… medications checked and filled. Amy had decreased her pain meds. We were happy. But it was discovered later she decreased then due to the vomiting, and only that. Amy went to bed, and I did some more work. I came down to the house to find her in her car. She looked at me and talked as if she were drunk. I got in and drove her to her flowers. As we walked to the garden, she fell into me, heavy and all her weight, and I held her. I told her I was coming in to take a nap, and she was ready too, so we went back and slept. I got up, and she remained in bed. All the rest of the day and into the evening. Thursday I woke her early and she looked at me and said “I don’t feel well at all”. I gave her her medicine, but I saw in her a change. She said she couldn’t do the garden today. We planned to with her brothers. I told her it wasn’t anything to worry on, just rest. I worked and waited for her brothers to arrive. I explained to them how she had changed. They came and saw her, and the seriousness of it all set in for them. Before they came, I went to Amy and asked if I could do something. I prayed. I asked God to see this, to see what it was. I asked it all in love for her. I said in my prayer to God that I release her from me to him. She is free. We cried, very hard. She was very coherent, and she looked at me and said that was so nice. She was very aware of what was changing, she said it was changing in her. We held each other for a time before I left to let her rest. Her brothers came in and saw her, and it hit them like a train. They knew then it was what I said. She was declining fast. We spent the afternoon with her, letting her rest and being with her. I asked then to do what I had done. I asked them to release her too. She felt peace with that. She reached out to me with names of some she wanted to see, and I got them for her. Friday was going to be busy for her, but it would be set in a time she could handle. I had her to myself Thursday and we lay together and held each other as best as the tube and the pain would permit. Her mind had begun to be childlike. Slower sentences, sometimes funny and non coherent things of her past being said. But still she was there, and answered all questions well. She was still Very aware.

Friday entered with a violent storm. Rain rain rain. Coming. The weather had hindered our plans for early gardening over and over. It affected what today was. Family had come. Friends too. She visited off and on with them all, talking and loving and laughing at the things she said. She vomited over and over, and food was not an issue anymore, it was not a possibility. She tried. She tried so hard, but it wouldn’t stay down. The nurse came and went. She said, it’s definitely changing. But, she felt there was more time. Days, maybe even a week. I was hopeful of this. More time. But agonizing too. More pain. My baby girl was hurting, vomiting was worse for her than anything, and my tears just flowed as I held her when she did. Late into Friday evening all had left, even our pastors. She was in a good state. I would ask of her visits, and she knew all of them. She awoke and walked to the couch with my sister and I. As she sat there, she sat back, talking. Her breathing at one time shortened to about 5 breaths in a minute, and my sister and I sat stunned and silent, tears rolling, but we did nothing. We were trapped because Katie and I are both knowing that there is a time when this needs to end. Her pain outweighs our love here. We watched. She regained composure after an eternity of a minute. She said she was ready to lie down.

I climbed into bed with her and we held each other’s hand as we slept, an hour later she pulled away, but I rested my hand on her thigh and we slept more. I had been able to give her pain medicine, and she kept it down. She was able to rest. An hour after this, I awoke to her saying, “Nate, help me.” I jumped up, and went around the bed. She had managed to remove all her pillows and she’s was struggling to get up. I lifted her up, and as she placed her feet to the floor, she almost collapsed to a pile. I lifted her onto the bed and lay her down, sat her up, and she looked at me and said, “I have to go the bathroom because I have so much to throw up”. I gave her her pain medicine. Her eyes turned sideways to the left and right, her breathing began to get heavy and labored. I cried out and said, oh baby, oh baby, and put my hands on her. Anywhere, everywhere, as she was seeking me with her eyes, and they weren’t letting her. She looked at me as her breathing was spaced and heavy, and her face was straight with no emotion. With tears rolling down my face I watched her. I wasn’t going to do anything to pull her back. I said to her “I love you so much”. So much….. earlier that evening, she had gone to bed we had kissed and I was close to her face and had said that too, and she looked at me then and said, I love you too. She knew. Our eyes were no more than 4″ apart when we did this. She was clear headed at that moment, 2 hours before.

We were alone when it happened. Her breathing just stopped. I took a minute and called my sister and told her to come. And I sat in silence and sadness, and held her. I want to hold her now as I write this, I want to squeeze all of her I couldn’t squeeze for so long. She had gone. Faster than it could have been. She went before the pain medication could take effect. She didn’t need it. When we lay down in the darkness before this, 2 hours before, I prayed to Jesus this time and asked for him to take her away from all this. I had prayed this before, for my daughter Libby, and 2 hours later she was gone too. It is ironic to see this now. It feels as if it were in my hands, or at least, my power to trade her from this world to the next. I watched this for 3 days, and I believe now that for a body to die, the Lord needs to sever the soul from the body. The process is hard, and harder for some than with others. I believe the more peaceful you are in Christ, the easier the spiritual surgery is in the end. Amy’s was very easy when the time came. Some writhe and torment for days. She didn’t. I Believe now that the severing of the soul from the body was not originally done by Christ. People did it to Jesus the first time. The pounding of the nails through the hands and feet. The thorns twisted and set to the head, the raising of the body to suspend it on the cross, letting gravity pull the body back to earth and the spirit to the sky. They did it first, and now we see it at these times. There is no one to blame but Adam for this. We wouldn’t see this if it weren’t for the original sin.

You may find irony in all that is in the hindsight. I see a heavy irony in the fact that my wife’s
last journey was on a Friday. People had come to visit and see her, and give what they could give. Mourning and sadness, and happiness and celebration. She saw them all, she gave them this. She came out to the couch on her last effort of living, and showed the signs it was closer now. She passed into the night, early morning. Saturday was reflection, rest for all of us, quiet, and an attempt for some rebuilding of our bodies.  Sunday, I sit and write this to all. On Friday, Jesus look down from the cross and saw her mother, and others, and disciples, and spoke. He saw anger, and others with that too, and pain, and the turmoil which sat in the back that is occurring here as well. He took it all in. He died on Friday, he lay on Saturday. He rose on Sunday. Amy’s loved ones are trying to put together some of their lives today on Sunday.

Amy and I said all we could about what we meant to each other over these last weeks. It was vivid and real. She knew of my love for her, and I knew of it for me. She sat in Idaho and brought up a conversation to me. She looked at me and told me how powerful my personality is. She told me how great a father she knew I would be, and how much love she felt. She said she knew there were and was someone out there who needed what I have, and I need to open my heart someday for it. I got very defensive and said no no no. There isn’t, and I don’t want someone else’s problems. Someone else’s children, someone else’s pain, someone else who may get sick. Another baby who could die, and so on. It’s very painful and a hard conversation.  A few weeks ago, she mentioned it again. This time I was able to reply in a way that made her very tender. I told her how I feel, about her and abojt love.  I said, “Amy, there is not a thought or desire, even a remote feeling of those things, and that crossing my heart right here and now. But, I know now that all of this is Gods plans. I have completely lost all connection with thinking I have total control in my life at this point on.  I tell you this though. If what you’re suggesting was in my path in the future, I see it somewhat impossible to overcome, and almost impossible for another woman to accept the fact that if that was true, she would have to share a little of me. Truth is,  I will never stop thinking of you. I will never stop saying out loud, even if you are not there, that I loved you so much. That I miss you and it hurts deeply. I’ll never be able to press those down somewhere where they won’t float up again from time to time. I don’t see that as fair at all. Being shared. Please don’t think about these things, because you are here, and I am here. And I am at peace with what is in front of me right now.” I mean this. I told her too, that in a way Amy loved me so much, she ruined me. I am a ruined man, with nothing carried in my heart but a love few will ever understand. In 8 days, our 7 year anniversary is here. I had 7 years of my life to feel things I am unsure I will ever feel again. I am answering questions from many as to how I am doing, and I tell them it’s hard, but I am ok. The truth is, I am not “ok.”   I can function and do what lays before me. I can even work, as I do enjoy it, I can plan the service we are planning, to the t of my wife’s wishes, which will be in a few weeks, as I want it perfect. And I want it huge. I can read, write, ship out items from Amy and I’s side business. I can cry, I can be funny, I can ride, I can fix things. But I am not “ok.”  My heart felt hope is I lay down to sleep one night soon, and that God finally has put on my heart that I did it. I know for many years I felt I had something important I had to do. It was clear to me as A child. I have suffered. Those who know me know this. I have felt pain. None like right here and now, but I have felt pain. I knew there was a reason. I hope this was it. Is it wrong of all those who love me to tell them that if I were to lay asleep and just go to sleep forever that this is wrong? Can a man hope for something like this. I know if this hope is not what is Gods will and way, I will go on. I will go fishing, I will spread ashes where she wanted them. I will throw her celebration, and I will pick up one day to the next. I promised her and promise all that I will take on Gods will. I know too that when we were first married, Amy suffered a feeling I needed to be more of a spiritual leader. I wasn’t able to, and couldn’t then. My extended family had destroyed me then. It took a few years for the things she was having trouble with to sort out, and for us to seek God more for our decisions. In the end, she knew through her own physical pain all I said and felt when I described mine, and how it makes you angry about it with God. She not only understood, she lived it for the last year. If she had survived, I know our relationship would have grown in the shortness we had of our lack of my leadership in being more God like. This was her desire, and I saw it in her journals I am reading, we did grow closer in time with this, but it would have been so deep, so unfathomable, that she would have been in complete bliss in our marriage. I don’t beat myself up on this. This struggle is in all who are in marriage. But it makes me strive for better. All who are reading this need to do the same. It would be Amy’s theme. It would make her happy. Seek God in your marriage. For when the realities of this cruel and unforgiving world come to your feet, without Him, you will suffer beyond hope. You will change and be unrecognized. With Him, you will overcome what feels most impossible to conquer.
I will provide details of service arrangements later. It is in the works, but may be delayed as long as a few weeks. There are specific wishes Amy wanted to see. I plan to do all of them.

Feb. 14 – Mar. 14

Tossing and turning in bed, trying to get comfortable on one side or another. The right side (liver) is definitely out, as is laying on my stomach. The left side hurts as well because of my spleen and now I’m crying as the familiarity of all of this strikes me. Winter 2015 it was the same nearly every night, but I didn’t mind as much. I slept fitfully or stayed awake on the couch feeling the movements of the twins swimming inside me. I talked and sang to them so that they would recognize my voice when we met in person.

My abdomen is nearly as big now as it was then. The tumors in my liver make it big enough to be palpable and the spleen is twice the size it should be, a symptom of liver disease. During pregnancy I loved the sight of my huge belly. Now it reminds me of the disease lurking inside.

During the day my abdomen is usually only a little uncomfortable. At night it often becomes painful, I assume because of digestion, and everything having less room. The skin over the angry organs becomes hard, distended and tight. If I were to bump into something at stomach level, I feel as though I would burst like a ripe grape.

Trying to get comfortable in bed, I can’t stop bitter, angry tears from coming. Here I am, feeling like I have come back to the same place of pain and illness that I was in in 2015. Only with a lot of suffering in between. And for what? My mind screams at God, “HOW CAN YOU???!!”. I want to sit up in bed and scream until I’m hoarse. I have a wild desire to pummel Him “If only He were human”, my mind says.

But He is human. I see Jesus, just a figure in my mind, and I see myself before Him. I hesitate with a choice, one that we are all faced with at some time in life. Curse or worship. I choose to fall, weeping, at His feet and say with faith or strength that I barely have: “You are love.” The words and the act of saying them is so raw that I might as well be turned inside out- heart and guts displayed to the world. It might be the greatest surrender that I’ve ever made.

 
It’s been a rather emotional week. If life went according to plans, Nate and I would be in Utah or Arizona right now. We had planned and booked an exciting trip to see the Grand Canyon and other canyons in the Grand Circle of national parks. Sadly, we had to cancel the trip. I became ill four days ago and am just now starting to feel better, though weak and with a low fever hanging on.

Canceling was a big disappointment to me. It’s one more thing to try to accept and not be angry about. This trip, our girls, my health, life itself. The Lord gives and the Lord takes away. I continue to say “Blessed be Your name” because I know it’s the right thing to do. I have faith that before the end, I will be able to say it and mean it.

 
The latest on the medical front is that I had another TACE procedure (injecting chemo into the liver) on Feb. 14. The side effects were rough, but I think I’ve healed from them. I’m due for some imaging before long to see if the procedure did its job. Death to cancer cells.

Anniversary & Update

I’m happy to say “goodbye” to January, a month that I was not looking forward to. January marked the one year anniversary of when my pregnancy turned frightening and I was admitted to the hospital, and it held the babies’ birthday. On Jan. 22 Nate and I commemorated their birthday in a small, quiet way, then welcomed the distraction of the Pats game in the evening.

One of the gifts of marriage is having a partner who is strong in areas where I am weak, and vice versa. Nate’s ability to be practical even in mourning has helped me greatly. I tend to mourn the loss of what I imagined and expected: the feeling of plump little baby bodies in my arms, chubby fingers digging into their first birthday cakes. Although it’s futile to guess what might have been, it is possible that reality might have been different than my expectations if our girls had lived. Their first birthday might have involved feeding tubes or other medical devices. It might have been spent in a hospital. It’s hard for me to look at pictures of the babies now because every picture shows a tiny grimacing face, a reflection of their constant pain and discomfort. I am glad that they will never grimace in pain again. I try to focus on that reality rather than on my mental images of laughing, chubby toddlers.

The girls’ birthday caused me to do some thinking on what their purpose here on earth was. They lived a short time, all within the confines of my body and then an incubator- to what end? What good did they do? It might seem like an odd question to be asking, but when it occurred to me, it was important to have an answer. The answer came quickly, and as far as I’m concerned, from the Lord. The first line of the Westminster catechism, not something that I think of often or am even very familiar with, entered my head: “What is the chief end of man? Man’s chief end is to glorify God, and enjoy Him forever.”
Our girls are enjoying the presence of God now, but what about glorifying Him? It occurred to me that it is Nate’s and my job to glorify God for our daughters, who didn’t have any recognizable ability to do so.

 
The update on my health isn’t good news. A few weeks ago a CT scan revealed that the tumors in my liver are growing, and there are very small spots on my lungs. I was expecting bad news, since I have been off chemo for so long. My platelets are back up to a level where I could have chemo, but my oncologist wants to be cautious about future treatments since I can only handle low doses of chemo. He wants me to have a procedure called radioembolization. It is similar to the TACE treatments, but this delivers radiation rather than chemotherapy directly to the liver. Nate and I will be meeting with the radiologist next week to discuss this option. As always, we are interested in balancing the benefit of the treatment vs the physical effects.

Nate and I want to take a trip to S. Utah / N. Arizona in March. This would be a simpler trip than our last Western trip. We would fly out and stay at hotels rather than drive and camp. The radioembolization procedure might change our plans- if I have the procedure, I’m not sure if it would be ok to wait till after we come back. The side effects could cause us to postpone or change the trip.

I would appreciate your prayers for God’s wisdom and guidance regarding treatment decisions.

Fear Not

For five days last week and part of this week, I was experiencing an alarming chemo-related health problem. I’ll skip the details. Happily and thankfully, the situation is somewhat resolved, and while I’ll need more treatment for it, I’m much better now.

At the height of the problem, I was freaking out. Not quietly freaking out, but loudly insisting to God in a constant stream of talk, that He had better either make the problem stop or just take me home right then and there.

I imagine that a lot of people have had a moment like this and have said something similar to God. A moment on panic, pain, anguish or illness where we can’t take any more and the only way out that our human minds can conceive is OUT. The big out.

In my moment of panic, a still small voice said, “Do not be afraid. Fear not, for I am with you.” The Creator of the universe proceeded to remind me of time after time when He said these words to humans who were freaking out or otherwise needed to hear them.

 
And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people.” Luke 2:10

For I, the Lord your God, hold your right hand; it is I who say to you “Fear not, I am the one who helps you.” Is 41:13

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Is 41:10

Fear not, I am the first and the last, and the living one. I died, and behold I am alive forevermore, and I have the keys of Death and Hades. Rev. 1:17-18

 
As I was walking into a grocery store a few days ago, I noticed some champagne bottles drawn on their specials sign, with the words Happy New Year. Oh yeah. I had been occupied with Christmas and what was going on with me and had pretty much forgotten the approaching new year. I was suddenly filled with dread and yes, fear for what the upcoming year might hold. What if the cancer grows, what if I start to go downhill, what if this is my last year… Yet I know that God’s message to me in the middle of my panic didn’t apply to that one moment only. He intends His peace to cover the acute fear and the gradual fear. The long term, mounting dread kind of fear as well as the short term, help-me-out-of-this-now! kind.

I like to translate some of the “Fear not” phrases as, “Don’t worry. Everything is going to be alright.” That is God’s message for me about this coming new year. It can be your message, too.

Thankful

Topping my Thanksgiving list this year was friends, family in Christ, neighbors and our community who all continue to lovingly encourage and support Nate and I. October was a very difficult month for us, as well as a good deal of November. I experienced more grief and depression in the past two months than in all the prior months combined. I am doing better now, thanks to the help of our good Father who hears and answers prayer. It amazes me when people say “We’re still praying for you every day.” Wow. Praying for 11 months straight! That takes remarkable dedication, faithfulness, perseverance… Thank you all so much.

Chemo treatments have been on hiatus for three weeks and counting. My platelets are chronically low and continue to drop. So it’s time to take a break and see if platelet production can recover. If the platelets get very low there is a risk of internal bleeding. Its probably not good to be off chemo for too long, either. Hopefully I can find a balance between the two. I was planning on taking a chemo break through the end of December, anyway, so the way things worked out is perfect.

Without chemo I am feeling good and am happy to have more energy than I have had in a long time. Yesterday I cleaned a spot in the apartment that I haven’t even thought of in 16 months or so, and did so with a smile, happy to be able to clean. A local YMCA offers Livestrong classes for cancer survivors and I’ve been going to those twice a week. Thanks to the generosity of Y donors, the classes are free and I have a free membership for the 12 week duration of the class. The other members in the class are lovely, delightful older women who I am enjoying getting to know. Most of the people at the gym are there alone and keep to themselves. Our class is the opposite: chatty, friendly, helpful, with lots of camaraderie. Exercising with the older ladies makes me feel relatively strong, flexible and energetic- a nice change- but I’m hoping to improve in all those areas. Since October 2015 I’ve been pretty inactive. Today I worked out hard enough to sweat. It felt good emotionally as well as physically. As I worked harder, I got angrier at this disease, to the point that I said some choice words out loud to cancer. If I’d been alone in the gym I would have been yelling. And hitting things. It would have gotten ugly 🙂

Fight

Earlier in this cancer journey, someone told me of her metal picture of me resting in God’s hands as if I were a leaf resting on water. I liked that picture a lot. It’s peaceful. At the time, it was also the easiest course (mentally, spiritually) for me to take. That was then. Now it’s time to fight.

I used to think that the term “fighting cancer” just referred to physical progress made against the disease. Since August I have learned that fighting cancer also-and perhaps primarily-means fighting the desire to give up. I’ve been in treatment for a little over 7 months. Incredibly, some people endure chemo for 10 years, and some cancer patients have far worse side effects than me. Regardless, I often want to quit. Those times are usually 1) when Nate and I are stuck in Boston traffic early in the morning, going to the hospital 2) after chemo when I feel hollowed out, like a melon rind that’s had all the good stuff removed 3) when the bones of my cranium ache like a migraine for 2 days due to a white blood cell stimulating drug 4) when I’m doing some physical activity that shouldn’t be hard, but I have to go slow, stop, catch my breath, hold on to something, etc. Feeling like an old person at the age of 36 makes me spitting mad.

It’s been a question in both Nate’s and my mind, whether the benefit of treatment is worth the damage it causes. This is the trade I’ve mentioned before- quantity vs quality of life, time vs energy. I was feeling so good while we were on our trip out West… one evening I climbed a bald, steep 2500 ft hill just to see what was on the other side (answer: more bald, steep hills). Since having the TACE procedures, I wonder if I will ever feel that good again. Will I hike another mountain? I keep hoping that my energy will come back, that maybe it’s just a matter of time. The oncologist did say that the more chemo I have, the less energy I’ll have.

The positive results of the CT scan weigh on the side of benefits of treatment, tipping the scale in favor of continuing chemo. At the least, we know that it’s giving me more time. Also, I’m holding the hope that the tumors will shrink enough that I’ll eventually be able to have liver surgery. So, I fight cancer and fight the desire to quit with chemo, exercise, good nutrition, prayer, and God’s words.

It was easy when I started treatment in March to have “faith”. I believed that God would heal me, by means of some form of treatment that wouldn’t take too long and would get 100% of the cancer which would not come back. Now I realize that I was just being unrealistic. I’m not sure that that can be called faith. Believing that ALL things work together for GOOD for those who love the Lord, is faith. Having faith for the long haul, whatever it brings, is hard. That’s a stronger faith than I have had before, and it is worth having.

There are some helpful things I’ve learned by this point, such as that I can have cancer and still feel healthy (though tired). I am learning that it’s possible to accept that treatment is my new normal life- something that I fought against for a while because I wanted my old normal back. And that surviving cancer doesn’t mean being cancer-free. I’m a survivor right now.

The idea and action of fighting for the will to live became significant to me after having the TACE procedure. I was wiped out for 4 weeks afterward, became depressed, despondent and wanted to give up. Out of the blue, my friend Michaelyn sent me a link to “Fight Song” by Rachel Platten. I clinked the link and listened to the song again & again & again. After about 10 times I could get through it without crying. Somewhere along the way, God used that song to speak to me: Why are you not fighting?! You can be a fighter! That message smacked me in the head then settled in my heart. Of course I can. Until the last round. There’s another song along the same lines that is excellent: “Overcomer” by Mandisa. I listen to these two songs nearly every day.

Here are some pictures of temporary tattoos that I had made as reminders of what I want to be / do. I’m going to adds the words “Survivor” and “Overcomer” to my tattoo arsenal.


I picked up this little griz because I like his / her attitude. All fight. Take that!image

 

So, this is more difficult and personal than cancer, but I wanted to write about it in the hope of helping someone else who has lost children.

Eight months after their death, the loss of the babies is more pressing than ever before. For the 2 short weeks that Liberty lived, and the 3 short weeks that Prairie lived, I was dopey from painkillers that dulled my feelings and in retrospect, have fogged my memories. There’s a lot that I missed, including normal grief (which may be both blessing and curse). Soon after the girls passed, Nate and I were plunged into my diagnosis and treatment.

I knew that grief would come in its own time, and it has. My smart friend Lindsay suggested that it’s happening now that my body is in better shape for it, the cancer being stable. And there’s probably more space in my mind now that cancer is not weighing on it so much. The babies have always been there, mostly on the edges of my mind. Lately they’re front & central. A picture came to me the other day of sitting on the flat rock ledge around a small but deep, dark pool of water. The pool is sorrow for the loss of our girls. I saw that most of the time I’m sitting nearby, staring at the water, but sometimes I slip in and am submerged. Lately, I’ve been more under the water than out if it, but that’s ok. I’m not drowning. I can swim, or hold on to the edge, or whatever.

“To him who overcomes…I will give him a white stone, and a new name written on the stone which no one knows but he who receives it.” Rev 2:17 This verse is inspiring. The words mean more to me now than ever before. It is awesome that Jesus will call me by a name that no one else knows. That’s got to be the best secret of all time.