Signs, Signs, Everywhere Signs

FullSizeRender 200    I adapted the title of this blog from the song, “Signs,” by Five Man Electrical Band. The lyrics popped into my head while I was sitting at the kitchen table paying some bills and saw a cardinal, the first one I’ve seen since Jim passed away. Immediately, I knew I had to write a post about signs.

This whole journey with cancer and then with grief has been filled with looking for signs. In the beginning, when Jim was sick with pneumonia and had just been diagnosed with cancer, we looked for signs of recovery. We looked for signs that he was well enough to come home from the hospital. We looked for signs that he would be able to ditch the oxygen tank and be strong enough to fly back to Pennsylvania. Once we got back home, we looked for signs that we were choosing the right hospital for treatment. Once treatment began, we started looking for signs of shrinkage of the tumors. We waited for blood work, hoping his CEA (cancer marker) number would go down. He had cat scans and we waited for visual signs of shrinkage on those scans. As he crafted this blog, we all started looking for signs of hope. And we found lots of them. Blessings from friends, family, neighbors, church members and strangers were all signs of love and hope. Signs of love and hope also came from our children in the pictures they drew and notes they wrote to their Daddy. As time passed, we started seeing signs of the cancer’s progression. Weight loss, swollen abdomen full of fluid, and fatigue were all ominous signs that the chemo wasn’t working. Then, when he started hospice care, the nurses taught us to look for signs of impending death. They actually gave us a pamphlet about it; a list of things that can signal that death may be within a week, then days, then hours. Those were difficult days that turned into weeks and then months of heartache and decline. Jim and I spent time talking about how he would send me signs after he was gone to let me know he was o.k.

This takes me back to the cardinal. Many people think that seeing a cardinal is seeing a visitor from Heaven. Jim liked that idea and said he would send me cardinals to let me know he was o.k. Do you know, as hard as I looked, I didn’t see a single cardinal. Not one; until today. It was only for a moment. It didn’t linger on my porch like some other birds do. I saw it, nonetheless. So, it was my sign that he is still with me, encouraging me to keep going.

There have been other signs too. Jim always said he liked my hair red. “More red,” was his request every time I would go get it done. Shortly after he passed away, I went to get my hair done. I decided I would go bright red. Why not? Before I had even seen the final results, while the beautician was rinsing my hair, a song came on the radio. It was the song that we had played at his funeral in honor of our marriage. This song, and especially the version that we played, is not one I have ever heard played on the radio before. Chills. He liked my hair.

FullSizeRender 199   Butterflies are another symbol of visitors from Heaven. A friend from church painted this lovely sign for us which I have hanging right outside my bedroom door. The kids really love it, and we look for butterflies when we go for walks. We also have a beautiful stained glass butterfly that we got from our family grief counseling group hanging in our window. Both of these butterflies are blue, which is the color of colon cancer awareness and also Jim’s favorite color. Signs.

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The kids get signs from Daddy too. One of Madelyn’s dances for her recital this year is “Under the Bridge,” by The Red Hot Chili Peppers. If you knew Jim, you’d know that this was one of his go-to Karaoke songs. I’m sure to be sobbing as I watch my young lady dance to this song on stage in May.

One thing I learned from Jim during his journey is to really pay attention, whether it be signs, songs, birds, butterflies or anything else. I miss him so much, but I know he is here.  Am I sure of it? To quote my daughter’s Magic 8 Ball, “all signs point to yes.”

With Fierce Hope,

Amy

P.S.  The sign at the beginning of this blog post is significant also. If you knew Jim, you know that one of his favorite sayings was, ” Best ________ Ever!”  His sister got me this plaque after he passed away, and I smile each morning when I see it on my dresser.

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Hello again from Amy at Fierce Hope! I had hoped to connect with you all sooner, but I had technical difficulties navigating the blog after Jim passed away. A former student of mine offered to help me get it fixed and it was such a blessing that came at just the right time. Now Jim’s words are out there for all of those who were inspired by them. When I wasn’t able to access the blog, I started sharing posts on the fiercehope.com facebook page. Join me there if you haven’t already. Over the next few weeks I will try to republish anything here that I think was important. So, let’s start here. I wrote this in June of 2016, about 2 months after Jim passed away.

 

Finding Our “New Normal”

Finding a “new normal” when a loved one passes away seems to be a common phrase. I’ve used it myself, but sometimes it feels somewhat cliché. So, what does it mean to find a “new normal,” after what my family has been through? I’ll share what it has meant for us.

-Finding our new normal means figuring out how to help three kids with different personalities and different ways of coping with things deal with the loss of their father. It means doing this while also trying to figure out how to cope with it myself.

-Our new normal is remembering we are now a party of 4 instead of 5. Seems like a small thing, but it is a reminder every time I set the table or figure out how much pizza to order, that Jim is gone.

-In that same vein, our new normal is getting used to being just the four of us after having so many people staying with us and helping out for several months. Getting back to making meals and doing normal things after having help from friends and family was harder than I thought at first. Little things like remembering that we need milk or bread or someone doesn’t have any clean socks can seem like they are no big deal, but I had people here keeping up with the laundry and running to the store whenever we needed it, so I just have to remember that my new normal in that department is just getting back to my old normal.

-My new normal means putting the kids to bed and then finding something to fill the silence. Reruns of “Friends” seem to be working for the time being. Sleep is elusive. It is too quiet; too lonely; too much time to think. Yet I am glad to have some time to myself. Morning comes too quickly and then I have to drag myself out of bed to get back to finding my new normal.

-Our new normal often means being woken in the night by someone having a bad dream. Most of the times it is one of the kids. Occasionally it’s me.

-My new normal means I am a widow and no matter how many times I hear it, it just doesn’t seem right. I am too young. My kids learned what a widow was at church during the children’s sermon one day. They never once mentioned it at home. I wonder if they will grow up not thinking of a widow as an old lady like I always did?

-My new normal means trying to hold back tears when a song hits too close to home. It also means letting a few tears escape so that my kids know it is o.k. to cry.

-My new normal means not knowing what to say when people ask how I’m doing. It doesn’t mean I want them to stop asking. Some days I’m o.k., and some days I’m not.

-My new normal involves researching how to explain cremation to my kids and deciding when is the right time to take them with me to scatter the ashes. That one is really tough.

-My new normal brings a lot of tying up of loose ends. . .filing paperwork, dropping off death certificates, trying to unlock Jim’s cell phone so I can download his pictures, rolling over his retirement accounts, and lots of other things that just keep cropping up. Each one is just another reminder that he is gone.

-New normal is meeting someone new and wondering how many conversations we should have before I tell them my situation. Maybe someday that won’t define me and I won’t even have to think about mentioning it, but right now it feels weird.

-My new normal is going to grief support groups and feeling like a fish out of water. This doesn’t seem like somewhere I ought to be. Yet I feel like I need it. I need to find other people like me. At least I can smile thinking that Jim is likely getting a kick out of me going to these groups like Edward Norton in one of our favorite movies, “Fight Club.”

-My new normal is worrying about the future. Worrying what I should say to people when they ask me if I am going to get a job and if we will be able to stay in our house. I know those questions come from genuine care and from us so openly sharing our journey, but if you’re wondering, just know that I am using our cushion to buy some time to figure out the right answer for me and my kids. It is always on my mind. It is complicated, and I am working on it.

Those are some of the hard parts of finding our new normal. There are positives too and I don’t want to overlook them.

-Our new normal is keeping busy. We have been blessed to have help in keeping the kids engaged in activities that they love this summer. They have had opportunities for theater and music and camps. I have found fun, free stuff for us to do locally. I even won tickets to a theme park on the radio, so we got some free family fun from that. Busy is good right now. We will slow down eventually, but for now, busy is what we need. I trust my neighbors will overlook our overgrown weeds while I am keeping up with our busy schedule.

-My new normal is spending time with friends. Having a loved one who is ill can be very isolating. Knowing that Jim is at peace allows me to get caught up with some old friends. I have gotten to chat with friends while the girls are at swimming lessons, and I enjoyed some lovely desserts and conversations while the kids were at Vacation Bible School. Being with friends this past week has been so refreshing.

-Our new normal is sharing stories about Jim and not being afraid to mention him when something makes us think of him. It is nice to be able to remember the fun times when he wasn’t sick and it’s so important to me that the kids have some memories of that too. It will be especially hardest for our twins since they are young and he was sick for so long that they may have very few memories from before he was sick. Even our oldest may start to forget. Telling stories about him makes them smile, and that is good for all of us.

So, the next time you hear someone talk about “finding their new normal,” think about all that that statement can entail. Sometimes it’s o.k. to just forget about what is new. Who needs normal, anyway?

Blessings and Fierce Hope,

Amy

FullSizeRender(34)I can hardly believe that a week has gone by since Jim passed away. For those of you that didn’t already know, Jim was called Home last Wednesday, just three days shy of his birthday. The final week of his life was really awful for him. His mother, sister and I were by his side as he took his final breath. Even though we have known for almost two years that this is how our story would end, we were still not prepared for the heartache. I take comfort in knowing that he is no longer in pain, but it doesn’t take away the sadness. You can read his obituary here: http://www.legacy.com/obituaries/publicopiniononline/obituary.aspx?n=james-allen-ross-jim&pid=179812285&fhid=8385

On his birthday, the girls and I went to one of his favorite places and released balloons to celebrate.  It was quite difficult having his birthday just three days after his passing, but it was good for us to be together.  They sent kisses and messages with their balloons and we watched them until they were out of sight. Then we took a short hike in his honor and followed up by eating some lasagna which was the first birthday meal that I ever cooked for him.

I was overwhelmed by the outpouring of love at his service on Monday. So many family members and friends were there to offer their love and condolences. The service was just perfect. It was exactly what Jim had planned and it brought me much comfort to feel his presence through the poetry and songs that he picked out. I will list the names of the poems here so that you may look them up and enjoy them if you wish. It wouldn’t be a service for Jim without his own thoughtfulness and humor. A year ago he recorded a video to be shared at his service and I share it here as well because it was just perfectly “Jim.” He received military honors at the conclusion of the service.

I leave you for now with many thanks for the love and support that you all have shown, and I know that my girls and I will continue to be lifted up by those around us during the months to come. This poem was one that Jim had chosen to be printed on the inside cover of the bulletin. Following that is the list of the other poems that were read at the service and a link to the video.

 “I fall asleep in the full and certain hope

That my slumber shall not be broken

And that though I be all forgetting

Yet shall I not be all forgotten

But continue that life in the thoughts and deeds

Of those I loved”

–Samuel Butler

 Poems from the service:

“Little Gidding” by T.S. Eliot

Song in honor of our marriage “Make You Feel My Love” (we picked this out together a few months ago to have played at the service)

“Song of Myself” (a portion from #46) from Walt Whitman, Leaves of Grass

“You Are” by Rumi

“Gone From My Sight” by Henry Van Dyke

FullSizeRender(32)Semper Paratus is the motto of the U.S. Coast Guard. It means, “always ready.”  Jim served in the Coast Guard from 1990-1994.  I didn’t know him then, but I have learned over the years how much that time serving in Alaska meant to him.  I know that he was “always ready” to enjoy the Alaskan scenery.  He was “always ready” to carry out his duties.  He was “always ready” to have a good time.  He was “always ready” for an adventure, like the time he used his leave time to hop on a military plane to Japan.  He was “always ready” for a smile and a laugh.

Now that he has spent 11 weeks in hospice care, Semper Paratus has taken on new meaning.  These days, Jim is “always ready” for pain medication. He is “always ready” to nap.  He is “always ready” to talk about food and plan his next meal.  For those of us caring for him, we are “always ready” for bad news.  We are “always ready” for the other shoe to drop.  We are “always ready” for heartbreak. Yet, none of us are ready for what is to come.  We know it is coming.  We even pray for it so that Jim can be free of pain. But we can never really be ready.  I’m not ready to say goodbye.  I’m not ready to watch my children lose their Daddy. I’m not ready to be alone.

Yesterday, Jim’s hospice team came to the house and held a short veteran’s ceremony during which they presented him with a pin and a handmade lap blanket to honor him for his time served in the Coast Guard.  Jim’s mom and my parents were able to be with us for the service.  They even presented my dad with a pin for his service in the Air Force. The chaplain said a nice prayer, and we all shared some smiles, which have been few and far between as of late.  I am so proud of Jim for all that he has accomplished in his life.  I asked him if it would be o.k. for me to share pictures from the service, and he said it was alright with him.  He is, by far, the strongest person I know.

Semper Paratus: With Fierce Hope,

Amy

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IMG_8164The Waiting Game

Many people have been waiting for updates on how things are going for Jim. I have hesitated to write anything because it is such a roller coaster. By the time I write and publish something, things could be totally different. Because we have such a wonderful support structure, I do want to give the best update that I can, but know that by the time you read this, things may have changed.

When Jim came home from the hospital, the hospice staff all told us, “he won’t be with us long,” based on his condition at the time. It is something that is hard to hear, but seeing him in pain is harder yet. He has many days where he mostly just sleeps. It takes two of us to get him out of bed to use the bathroom. His body aches and his stomach hurts. However, he also has days where he is more awake and communicative. He still enjoys eating, and if you know Jim, you know that is a big deal. He has enjoyed food from some of his favorite places, including Aki, Kenzo, Five Guys, Café Del Sol and Grill Kebob. For those of you that have been following the blog for a while, he even finally got his steak from Ruth’s Chris, thanks to his sister’s willingness to drive three hours in the pouring rain to bring it to him. Several times, the hospice staff has told us that it’s probably just a matter of days. Each time, Jim has rallied back and had good days that leave us scratching our heads. I certainly am not ready to say goodbye, but I don’t want him to be in pain anymore either. I am thankful that he has had time to spend with our girls. They are all handling things in their own way, which I think is pretty normal. We pray that they will have all of the support that they need in all aspects of their lives over the coming weeks.

I am incredibly thankful for the support of our family and friends during this time. Jim’s mother has been staying with us since he got sick. My parents are here often to help. Jim’s sister has stayed with us a good bit too. My sister has taken her fair share of turns spending nights here to help out as well. Other family members have visited. Our pastors have offered support. Friends have provided meals, gift cards, warm thoughts, etc. I truly don’t know how we would manage without our support system.

So, now we wait. That’s the sad thing about hospice. No matter how great your nurses and aides are (and we have some good ones!), there is no getting away from the fact that we are always on watch for new signs of deterioration in Jim’s condition. He told me the other day that it is hard to sit in the bed and just wait to die. It is hard for those who love him to wait for that too. We all know that is what is coming, but that doesn’t make it any easier.

Since Jim really wasn’t able to contribute to this blog post, I’m including a poem by one of his favorite poets. Thank you all for so much support!

“Now We Awaken With Memories. . .”

Now we awaken with memories,

facing that which was; whispered sweetness

which once pierced and spread through us

sits silently nearby with its hair all undone

–Rainer Maria Rilke

 

With Fierce Hope,

Amy

IMG_8058Valentine’s Day and Hospice

This blog is coming to you today, courtesy of Amy. Jim is here next to me as I type, and will add his contributions if he is able.

As many of you already know, Jim was taken to the hospital via ambulance on February 2nd. He was extremely ill, and after consulting with multiple doctors with conflicting advice, he had a procedure to determine what was causing him to be sick. They discovered a bleed in his esophagus, which is apparently common when your liver is involved with your cancer. The doctor was able to fix the bleeding, at least for now, and initially, Jim perked up. However, we were told this bleeding could reoccur in as little as 2-3 weeks. Additionally, he started declining pretty quickly. After talking with each other and consulting with his oncologist and the doctors who were treating him, Jim made the decision to transition to hospice care. That was not an easy decision, but it was becoming clear that the chemo was no longer working, and he was out of options. He had also lost a lot of weight and become very weak. So, after 6 days in the hospital, he came home to be with me and the girls. We have been surrounded by family who have been helping immensely with Jim’s care and with keeping the girls’ lives as normal as possible. Our friends have set up a meal train and have just generally been wonderful. It has been pretty much the most difficult week in this fight so far. But we know the worst is yet to come. His hospice nurses and aides are great. They have been kind and have assured him that he will be taken care of and his pain will be managed. It is still scary.

Hospice and Valentine’s Day make strange bedfellows. Yesterday, I went out to get cards for the girls and for Jim. It was tough reading all of the happy husband cards out there. “I am so happy that I get to spend the rest of my life with you.” “What a wonderful life we share. I can’t wait for our future together.” You get the idea. They don’t make Valentine cards for people who are dying. I found one that was simple enough to say what I wanted to say, but it was a tough first trip out of the house since he came home. On the upside, we ARE getting to spend this Valentine’s Day together. It may not be the way we imagined, but had we listened to the first doctor we talked to at the hospital, I’d be spending this day alone. Instead, I gave him the card that I got for him and we shared a special donut date while the girls were at church with my parents. Jim used to always go out on the weekends and get donuts for breakfast. It’s something that we haven’t shared in the last year and a half since he stopped driving due to his medications. It just didn’t feel right for me to go get the donuts because that was his thing. Last night, while I sat next to him while he slept, I came across a Facebook post from our new hot fresh donut shop that was offering 4 free Valentine donuts to the winner of the contest. I shared and tagged and shortly after, went to bed. I got up this morning to find out that we won the contest. So, I went out and got our special donuts, and we enjoyed some special time together. It really is the little things that mean so much. We don’t know if he has days or weeks left, but we continue to live with fierce hope for peace, comfort, love and happiness.

With Fierce Hope,

Amy

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As many of you know, I’ve had taking the kids to NYC as a bucket list item for almost a year.  Our oldest daughter has been there, but the little ones haven’t, and all three girls are very into theatre just as I was back in the day. Well, a generous and anonymous donor has stepped forward to make this family trip happen. This means that we will have the funds to take the kids (by train) to New York, stay in a hotel and take the kids to see Aladdin on Broadway. The donor was so selfless that they asked that this trip be a gift from Amy and me to the kids. How amazing it was to see their faces on Christmas morning when we told them that we’d be taking them to NYC!

This trip is a dream come true for my family, and I feel deeply grateful and humbled for the help we received to make it happen. For us, it is all about making memories with the kids while I’m still alive. I want them to never forget it.

With Fierce Hope and Gratitude,

Jim

 

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Merry Christmas

If a year ago today you would have told me that I would make it to another Christmas, I may not have believed you. Here I am. I’m still in a life or death struggle with inoperable cancer, but I am surviving. Everything I see this time of year gives me hope. The soft light from the Christmas tree, the evenings home doing Christmas projects with the kids, and the hymns and songs of the season fill me with gratitude to have made it this far.

Grace has a way of playing a role in your life in unseen ways. The terrible reaction that I had to the chemo treatments I had in October could very well have happened over the holidays. That would have meant Christmas from a hospital bed. I am so thankful that I will be home with my family for Christmas instead. I am also moved by the extreme generosity that is being shown to my family. Money is tight with me no longer working, and people have come out of the woodwork to help us. The Christmas time donations on our blog have been steady and very welcome. We’ve also been given help for Christmas needs, and that has made a big difference.

I am the luckiest man alive today. If I relax and pay attention to the present moment, I can still live a lifetime in  just a few seconds. Life is giving me these opportunities everyday. I don’t want to miss a thing. Not a smile from my daughters, not a song about Christmas, and certainly not a second of the precious few days I have left. I won’t allow myself to squander a second. So I want to say Merry Christmas to all of my blog readers, and thank you so much for the continued generosity you’ve shown my family and me.

With Fierce Hope,

Jim

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I’m not going to sugar coat things. I am pretty desperate to survive. Things aren’t going well with my liver. I am producing fluids at an alarming rate, which is one of the bad signs that things aren’t working correctly.

Since my near fatal reaction to one type of chemo, they have put me on something else that is far less aggressive toward my cancer. I am hopeful, but concerned that the lesser chemo won’t be enough to hold the cancer off. My last scan showed the tumors had grown in both number and size. So, this is what I mean by hope becoming desperation.

Don’t get me wrong. My will to live is still strong, and outwardly I am doing better in some areas. My appetite came storming back with a vengeance. I eat everything not tied down. My hair is growing back, and I generally feel better than I did 2 months ago. However, the reality of my situation is always with me. I want to live. I want to see my girls grow up so badly.

My battle with this cancer has taken on tidal form, with the ebb and flow of the fight going back and forth. Right now the tide is out and I feel ok. But I always feel like I’m waiting for it to rush back in and consume me. That won’t happen without a bitter fight from me.

With Fierce Hope,

Jim

6 Months

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It’s been a long time, and so much has happened that I decided it was time for an update on my condition. As I explain what has happened to me, you will see why it’s been hard to do a blog update.

Everything started with that new chemo cocktail that they started me on in August. Each treatment brought more severe side effects. The fourth treatment landed me flat on my back in the hospital. I had a ton of mouth and throat sores that made eating solid food impossible. It got to the point that I could not swallow my own saliva. The new medicine also took away my appetite. Over the course of three treatments I had lost over 20 pounds. The combination of these two side effects plus horrible diarrhea left me weak and in very bad shape by the time Amy convinced me to go to the hospital. Upon my arrival, my white blood cell count was down to 0.2, nearly nonexistent. The hospital gave me IV fluids and nutrition. I slowly made a comeback, but the mouth sores and lack of appetite hung on. After 17 days in the hospital, I was ready to go home. My body was weak and I had to take it slow gaining my strength to walk again. With my appetite coming back, I was ready for some real, home-cooked food. Special thanks to a good friend who set up a meal train for us, and to the volunteers who brought us many delicious meals. They’ve really helped me eat now that I’m home, and I know I’ve gained a little weight thanks to them.

While in the hospital, my stomach started filling with fluid. Because this is the area where my tumors are the worst, this could be a pretty telling sign that my liver is not doing it’s job, and that this chemo probably was not working either. They drained the fluid three times but eventually decided to surgically place a drain in my stomach. Amy has had to learn how to drain the fluid daily.

So, what happens next? I’m going to start another chemo treatment that is essentially one of the three drugs that had been in the old cocktail. This time it will be an oral medicine, however I will still go to the hospital to receive an infusion treatment of another drug every other week. The doctor tells us that if this treatment doesn’t work, I’ve maybe got 6 months to live. This is essentially my last shot. I haven’t given up hope yet, so keep those prayers and well wishes coming. We need them.

 

With Fierce Hope,

Jim