Jenny here.
It's been a fast few days. Sunday marked the beginning of my new work schedule with Sunday's off! It was a great day. The rest of the week I will work evenings, days at home taking care of Wil and taking him to appointments. This week he has appointments Monday, Wednesday, Thursday, and Friday!
I've been wanting to blog because there are things I want to say and share, but there are just things that aren't blog appropriate and instead I've had some talks in person or via text/email about parts of life right now that are not ready for mass publication. Wil and I think of ourselves as pretty open books. But down and around the twists of this road, there are other people to consider as well. How is that for cryptic!
When I find myself in times like these, I think back to a life changing experience I had a few years ago. Now, if you know me, I am open to the "non traditional." While I have done regular therapy for myself, been a therapist for years, and have lots of great people in my life, I also value experiences that allow you to go further. I've done yoga therapy, mindfulness work, and a few years ago did an integrative breath work retreat with a sweet friend. If you haven't heard of Integrative Breathwork, it might sound strange, so stay with me while I give you a mental picture: Laying on the floor cocooned in blankets, dark room, loud speaker system with stirring music, progressing from tribal drums to almost angelic instrumentals, with every kind of music in between to represent various emotional states and shifts. For 2 hours you allow your mind and breath to flow as it gets carried away with the music and you enter an aware, yet dream like state. Not hypnosis exactly, but similar. Are you judging yet? I know to some it may sound too off the map and that's OK. It's not for everyone. While you lay there, trained therapists (who also train in energy work and music therapy) walk the room and assist as needed. You have a friend by your side in case you need water, tissue, a hand to hold. A safe environment to tap into a deeper symbolic level of yourself.
During those hours of the retreat my mind raced. I saw myself running. Through dark, scary alleyways, through forests that rivaled Hunger Games, being chased. I ran for most of my 2 hours that day, with a feeling that I needed help but couldn't risk stopping, couldn't risk trusting. A deep sense of longing for others but being alone. Wil would pop up throughout, but I didn't even stop for him, I kept running until I hit a beach where I had a choice to swim across or face whatever was chasing me. Wil was there at the beach. If you know Wil in real life, you know he can't swim. I was caught between swimming and leaving him or staying. Fighting or dragging Wil out to tread water.
I won't tell you the ending to my saga because it wasn't the end that impacted me so much about that experience.
After you finish the 2 hours, your friend leads you to an art room where you are free to document your journey any way you want (a piece you take with you to the group therapy session the next day). When I left that room, a few of the therapy guides came to me and said they normally don't ask people directly about their experiences, but were curious about mine. I guess throughout my "running," they felt lead to come to me and touch my shoulder. They felt I was, energy wise, calling out for help. Yet every time they approached they felt me putting up a wall as if to say, don't. I kept drawing people close but unable to accept the support. You know, back then I got the lesson, but still continued "running" and not stopping or receiving help.
Now I am sorting through how support presents itself, often in ways we would not expect, in imperfect situations, while still safeguarding my dear husband so he can be as stress free as possible. I wish I could put him in a vacuum where no one could hurt him.
I don't have the answers. Gosh, I would like to know how this all ends, but only because I want to attach myself securely to the "perfect" ending, the one of my dreams where everything comes together like I think it should. That's a nice thought,, and maybe will be true, but not overly helpful in the long run because the future is unknown and I have enough to handle right here in the present. What I do now, is just stop and lay in the field and breathe.
Today, life remains complicated and wonderful. I'd appreciate some prayer for the complicated, yet not blog appropriate, parts of the ride right now.
Some experiences I may be more ready to share in time. I'm in kind of a holding pattern with my thoughts some days, but I know in reality I am working on getting through them. I have time, now that I am down to 45 hours of work a week, to think and see things I did not have time for even a few weeks ago, more processing to do even from that experience years ago... Feelings I had no room for while I was running through my forest.
Wil is continuing to walk more, have more energy to sit up and watch TV, working hard at PT. Bathroom issues are still something we are trying to conquer...laundry is still a big chore at times. He has his oncology appointment and labs this Thursday to see if that liver is ready for chemo. Our big goal before he goes back in is seeing a movie in the theater...since he won't be out and about in the germ places after his immune system is down again. It's a good goal that he is excited about!! I'm thinking a great birthday gift :)
The next week, regardless of the results, will be at home continuing to gain strength. Let the breath breathe itself.
Tuesday, January 28, 2014
Saturday, January 25, 2014
Peace
Jenny here.
First and foremost, let me say how great it is to have Wil home. Every day he is getting stronger and helping more with his ADL's (activities of daily living). I work swing shift 4 nights a week so I get home in the wee hours of the morning and if possible try to sleep in. The last few months there has been very little of that! Today, without knowing it, Wil got up, used the bathroom without any issues, and changed his PJ pants and came back to bed while I slept! When we finally got up and I made breakfast, he ate a 3 egg omelet and toast and hung out doing some PT exercises for about 90 minutes watching SNL. This friends, is huge progress and success! I am still waiting for the day I hear a laugh. I feel like a parent, just waiting for that next milestone.
After that I did something I haven't done in so long. I took a nap.
It started out as a caregiver thing. Wil wanted to sleep but was feeling anxious. As I have learned, laying next to him helps him calm down and sleep. So I snuggled in tight. It has been almost 2 months since we could just lay there in the same bed. As I pressed my nose into his shoulder, I remembered what a calming effect he has on me too. I laid there just breathing him in while he drifted peacefully off to sleep. These moments. These are the ones that have value beyond words. I will be happy when he can be independent. Overjoyed when we can go places and he can walk. Relieved when he is cancer free. But in these moments between life's pressing obligations and care taking, in the stillness...I can almost see him shake his head when I say I feel like we have what we need. That is, he is all I need.
My mind drifted for awhile to things I could be doing (yikes housework!). And then I heard that Bastille song Pom Pei.
"And the walls kept tumbling down
In the city that we love
Great clouds roll over the hills
Bringing darkness from above
"But if you close your eyes,
Does it almost feel like
Nothing changed at all?
And if you close your eyes,
Does it almost feel like
You've been here before?
How am I gonna be an optimist about this?
How am I gonna be an optimist about this?"
A month ago, with all the complications, the walls falling down were the words that made me cry. But today, laying there, closing my eyes, it felt like we were really home just like before. A B.C. feeling still alive and well in the midst of the big C! You know in your head that cancer can't destroy many things in your life. In the war zone, however, you have to battle the opponent before you can rest. Things have changed, but moments can sometimes feel like nothing has really changed that much.
I had so wanted Wil to be back at chemo right away, he had wanted to be back at UTSW right away too, waging war. Yet the cosmic, divine intervention that allowed him to be home right now continues to be what we needed more. An opportunity to put down our shields and defenses, a place for us to close our eyes and for moments like this afternoon, just be Wil and Jen. Nuzzling into him to care for him, I drifted to sleep myself. Even after all this time, he still takes care of me when I don't have enough sense to take care of myself.
Wil's dad is in town staying with us now, and I hope it gives him motivation to keep doing some great things all on his own. Even so, I have peace of mind knowing Wil can be at home with someone who loves him while I am at work if he needs anything.
It was a great day.
First and foremost, let me say how great it is to have Wil home. Every day he is getting stronger and helping more with his ADL's (activities of daily living). I work swing shift 4 nights a week so I get home in the wee hours of the morning and if possible try to sleep in. The last few months there has been very little of that! Today, without knowing it, Wil got up, used the bathroom without any issues, and changed his PJ pants and came back to bed while I slept! When we finally got up and I made breakfast, he ate a 3 egg omelet and toast and hung out doing some PT exercises for about 90 minutes watching SNL. This friends, is huge progress and success! I am still waiting for the day I hear a laugh. I feel like a parent, just waiting for that next milestone.
After that I did something I haven't done in so long. I took a nap.
It started out as a caregiver thing. Wil wanted to sleep but was feeling anxious. As I have learned, laying next to him helps him calm down and sleep. So I snuggled in tight. It has been almost 2 months since we could just lay there in the same bed. As I pressed my nose into his shoulder, I remembered what a calming effect he has on me too. I laid there just breathing him in while he drifted peacefully off to sleep. These moments. These are the ones that have value beyond words. I will be happy when he can be independent. Overjoyed when we can go places and he can walk. Relieved when he is cancer free. But in these moments between life's pressing obligations and care taking, in the stillness...I can almost see him shake his head when I say I feel like we have what we need. That is, he is all I need.
My mind drifted for awhile to things I could be doing (yikes housework!). And then I heard that Bastille song Pom Pei.
"And the walls kept tumbling down
In the city that we love
Great clouds roll over the hills
Bringing darkness from above
"But if you close your eyes,
Does it almost feel like
Nothing changed at all?
And if you close your eyes,
Does it almost feel like
You've been here before?
How am I gonna be an optimist about this?
How am I gonna be an optimist about this?"
A month ago, with all the complications, the walls falling down were the words that made me cry. But today, laying there, closing my eyes, it felt like we were really home just like before. A B.C. feeling still alive and well in the midst of the big C! You know in your head that cancer can't destroy many things in your life. In the war zone, however, you have to battle the opponent before you can rest. Things have changed, but moments can sometimes feel like nothing has really changed that much.
I had so wanted Wil to be back at chemo right away, he had wanted to be back at UTSW right away too, waging war. Yet the cosmic, divine intervention that allowed him to be home right now continues to be what we needed more. An opportunity to put down our shields and defenses, a place for us to close our eyes and for moments like this afternoon, just be Wil and Jen. Nuzzling into him to care for him, I drifted to sleep myself. Even after all this time, he still takes care of me when I don't have enough sense to take care of myself.
Wil's dad is in town staying with us now, and I hope it gives him motivation to keep doing some great things all on his own. Even so, I have peace of mind knowing Wil can be at home with someone who loves him while I am at work if he needs anything.
It was a great day.
Wednesday, January 22, 2014
Safety Nets
Jenny here. I was just thinking today that starting the blogs out this way kind of goes without saying. But it's my heart holding out for the day you will read words from Wil saying he's back.
The last few days have been similar. Although "normal" is not anything I can define right now, (each segment has it's own similarities between days, but changes quickly to the next phase) we are working on a schedule.
A day in the life of Jenny and Wil is as follows:
Wil: Eat, walk the house slowly using walker, sleep, work on trying self care tasks, sleep, TV, eat, sleep, call for help, sleep, etc.
Jenny: Changing Depends, helping cleanup Wil, laundry, cooking, TV, holding Wil until he falls asleep, laundry, cooking, setting appointments to coordinate care and services, meds, vitals, essential oils, and up off/on throughout night. (Last nights pressing question was "how do you split a cabbage?" He still gets disoriented when he's sleepy). 6 days a week are followed by work.
These are not glamorous days, they are hard and heart stretching. Lovely and unexpected. It's an interesting mix, somewhat slower days since I am not driving to see him, but busy all the same. I've never done so much laundry! And I've never kissed his head or held him more. I'd trade the laundry in...but I'll take the rest. He has my heart.
Wil's anxiety has been really high. He loves routine. And it just keeps changing. The new normal Is that there is very little that stays the same. Today I found him in his bed sweating, hyperventilating, and shaking. His pulse is always so high when he is in this state. All I could do is lay next him and squeeze him until the shaking stopped. He's more aware but with that comes thoughts about treatment, death, and me. His heart is so big. His poor head is so heavy with worry.
Tomorrow is his PT evaluation for outpatient sessions. We opted for outpatient vs in home because Wil really wants to get out of the house and the place he has gone to before is 3 minutes up the road. It will be an adventure all the same! I'm hoping he fresh air and new therapists will ease his mind.
Over the weekend we had a surprise one day visit from my paternal grandma. My uncle and aunt flew her with my cousin straight from Minnesota to Texas. Her first flight in 20 years. They say you need 4 hugs a day for survival and 12 to thrive. I think I'm finally caught up from the last month. I didn't want to let her go. It was exactly what we needed. An epic day. I'm lost for words these days. How can one describe the feeling of seeing their 86 year old grandma massage the feet of their husband, rub his temples, and give hugs that don't let go? It's like those silly commercials: Priceless.
The other word is rocked. It's the word that describes my life. Rocked at first with an unexpected, heavy, long term diagnosis. But now rocked because of all the people that continue to put their words, arms, and love around us. I often feel like an infant being rocked by the kindness that has flowed. From flowers, to cards, to gifts, to donated PTO. I hope I'm saying it as often as I feel it. We are so touched by the outpouring. Wil said "I didn't know that many people liked me." Silly Willy. Everyone who meets him loves him instantly.
Family and friends have truly become our safety net in every aspect. We are not comfortable asking for help. Thankfully we seem to have many stubborn, loving people in our camp who give of themselves when we have been too shy to ask. So many others have asked how they can help and I'm left not knowing how to say what I need. I apologize. I do need you. It feels vulnerable to make requests.
Although it's hard to admit or ask, in a effort to speak the truth about the cancer journey, I will be real with all of you tonight. The real issue for most people with a health issue, and especially cancer, is the financial strain it causes. In the midst of the fight for your life or your loved ones life, the medical bills keep coming in. The regular bills keep coming in. As you work less to take care of your loved one, the money dwindles but bills...keep coming in. You try to make it on your own. You cut out non essentials, argue with lenders to be lenient. You do your best in between the appointments and laundry and tears to come up with a plan. You try to shelter your loved one from the knowledge of the finances all together.
I remember reading an article back in May from NBC, right before Wil's 2nd biopsy, that stated cancer patients are 2.5 times more likely to file bankruptcy. I thought to myself, well thank goodness I have work and benefits. We are blessed with pretty decent benefits and coverage. But even so, we have been partially surviving the last 2 months on the kindness of family and friends. It might be different for different folks. Certainly being a contract worker has made it more "interesting" for me as the bread winner and caregiver. What gets scary is that we are in the early part of this and, although the first of the three years will be toughest we are told, it still leaves us on a tight rope until his disability is approved.
A friend of mine came to me last week with a project she wanted permission to proceed on. Again we are blessed with hard headed people who take the lead to help us when we hadn't even asked! This project is an invitation. If you want to participate, know it means a lot to us. We never want people to feel any pressure and are so appreciative of prayers and thoughts alone. But if you have been touched by our journey and are looking for a way to help us this spring while also showing support, check out her etsy link below. She is donating all proceeds to us and you get a specially made bracelet that has been Wil approved. Our goal is to sell 250, the amount left that we need to pay our rent until his disability goes through.
We are already wearing ours! If you do get one, we'd love to create a wall of pictures with you wearing yours...so shoot me a pic that I can print out so Wil can see the "Safety Net" of people in his tribe, near and far.
http://www.etsy.com/listing/176256062/safety-net-bracelet-fundraiser?ref=shop_home_active_1
The last few days have been similar. Although "normal" is not anything I can define right now, (each segment has it's own similarities between days, but changes quickly to the next phase) we are working on a schedule.
A day in the life of Jenny and Wil is as follows:
Wil: Eat, walk the house slowly using walker, sleep, work on trying self care tasks, sleep, TV, eat, sleep, call for help, sleep, etc.
Jenny: Changing Depends, helping cleanup Wil, laundry, cooking, TV, holding Wil until he falls asleep, laundry, cooking, setting appointments to coordinate care and services, meds, vitals, essential oils, and up off/on throughout night. (Last nights pressing question was "how do you split a cabbage?" He still gets disoriented when he's sleepy). 6 days a week are followed by work.
These are not glamorous days, they are hard and heart stretching. Lovely and unexpected. It's an interesting mix, somewhat slower days since I am not driving to see him, but busy all the same. I've never done so much laundry! And I've never kissed his head or held him more. I'd trade the laundry in...but I'll take the rest. He has my heart.
Wil's anxiety has been really high. He loves routine. And it just keeps changing. The new normal Is that there is very little that stays the same. Today I found him in his bed sweating, hyperventilating, and shaking. His pulse is always so high when he is in this state. All I could do is lay next him and squeeze him until the shaking stopped. He's more aware but with that comes thoughts about treatment, death, and me. His heart is so big. His poor head is so heavy with worry.
Tomorrow is his PT evaluation for outpatient sessions. We opted for outpatient vs in home because Wil really wants to get out of the house and the place he has gone to before is 3 minutes up the road. It will be an adventure all the same! I'm hoping he fresh air and new therapists will ease his mind.
Over the weekend we had a surprise one day visit from my paternal grandma. My uncle and aunt flew her with my cousin straight from Minnesota to Texas. Her first flight in 20 years. They say you need 4 hugs a day for survival and 12 to thrive. I think I'm finally caught up from the last month. I didn't want to let her go. It was exactly what we needed. An epic day. I'm lost for words these days. How can one describe the feeling of seeing their 86 year old grandma massage the feet of their husband, rub his temples, and give hugs that don't let go? It's like those silly commercials: Priceless.
The other word is rocked. It's the word that describes my life. Rocked at first with an unexpected, heavy, long term diagnosis. But now rocked because of all the people that continue to put their words, arms, and love around us. I often feel like an infant being rocked by the kindness that has flowed. From flowers, to cards, to gifts, to donated PTO. I hope I'm saying it as often as I feel it. We are so touched by the outpouring. Wil said "I didn't know that many people liked me." Silly Willy. Everyone who meets him loves him instantly.
Family and friends have truly become our safety net in every aspect. We are not comfortable asking for help. Thankfully we seem to have many stubborn, loving people in our camp who give of themselves when we have been too shy to ask. So many others have asked how they can help and I'm left not knowing how to say what I need. I apologize. I do need you. It feels vulnerable to make requests.
Although it's hard to admit or ask, in a effort to speak the truth about the cancer journey, I will be real with all of you tonight. The real issue for most people with a health issue, and especially cancer, is the financial strain it causes. In the midst of the fight for your life or your loved ones life, the medical bills keep coming in. The regular bills keep coming in. As you work less to take care of your loved one, the money dwindles but bills...keep coming in. You try to make it on your own. You cut out non essentials, argue with lenders to be lenient. You do your best in between the appointments and laundry and tears to come up with a plan. You try to shelter your loved one from the knowledge of the finances all together.
I remember reading an article back in May from NBC, right before Wil's 2nd biopsy, that stated cancer patients are 2.5 times more likely to file bankruptcy. I thought to myself, well thank goodness I have work and benefits. We are blessed with pretty decent benefits and coverage. But even so, we have been partially surviving the last 2 months on the kindness of family and friends. It might be different for different folks. Certainly being a contract worker has made it more "interesting" for me as the bread winner and caregiver. What gets scary is that we are in the early part of this and, although the first of the three years will be toughest we are told, it still leaves us on a tight rope until his disability is approved.
A friend of mine came to me last week with a project she wanted permission to proceed on. Again we are blessed with hard headed people who take the lead to help us when we hadn't even asked! This project is an invitation. If you want to participate, know it means a lot to us. We never want people to feel any pressure and are so appreciative of prayers and thoughts alone. But if you have been touched by our journey and are looking for a way to help us this spring while also showing support, check out her etsy link below. She is donating all proceeds to us and you get a specially made bracelet that has been Wil approved. Our goal is to sell 250, the amount left that we need to pay our rent until his disability goes through.
We are already wearing ours! If you do get one, we'd love to create a wall of pictures with you wearing yours...so shoot me a pic that I can print out so Wil can see the "Safety Net" of people in his tribe, near and far.
http://www.etsy.com/listing/176256062/safety-net-bracelet-fundraiser?ref=shop_home_active_1
Monday, January 20, 2014
Up The Mountain
Jenny here. Today is a day of love. Many will be glad to just have the day off.
“Well, I don’t know what will happen now. We’ve got some difficult days ahead. But it doesn’t matter with me now. Because I’ve been to the mountaintop. And I don’t mind. Like any man, I would like to live a long life. Longevity has its place. But I’m not concerned about that now. I just want to do God’s will. And He’s allowed me to go up to the mountain. And I’ve looked over. And I’ve seen the promised land. I may not get there with you. But I want you to know tonight, that we, as a people will get to the promised land. And I’m happy, tonight. I’m not worried about anything. I’m not fearing any man. Mine eyes have seen the glory of the coming of the Lord.” MLK
1967 marked the year of the historical case Loving v. Virginia that made interracial marriage legal across the U.S. One year later, we would lose the love warrior Martin Luther King, Jr. through violence. Yet it wouldn't be until 2000 (the year Wil and I got married) that the last state, Alabama, would officially legalize interracial marriage. Not a day goes by that I am not thankful for the fact I was able to fall in love and marry the man for whom I was destined. It's been less than half a decade since such a violent part of our past was becoming history.
I wish I could say that we have never experienced discrimination in our marriage. Growing up in small town white America I'm not sure I had experienced much before Wil. Certainly not much up close and in my face. Some of our early years together, and the varying opinions and first hand experiences about our choice, made us that much more committed and bonded. Today almost 15% of new marriages are mixed matches. Yet nearly once a day in the hospital or nursing home I would have staff ask "and you are?" Many still just expect you to be with someone similar. It was our unseen similarities though, of faith, world perspective, and moral compass that attracted us. It's been our differences that make our marriage strong, well suited, complicated at times, and always fresh. Today I'm happy to be at home with Wil. Indebted to the visionaries who marched with love and passion despite the dangers. I'm without adequate words, but thankful all the same. We should each go out and do something in love today.
Update: We are on our second full day home. We're both tired and adjusting to home life. Yesterday Wil was up and around at least 8 times. His endurance is still at about 30 minute intervals when he is upright. But he is navigating the house with his walker, attempting the bathroom and having some success, eating well, sleeping fair-good at night (some occasional funny questions in the middle of the night when he is half asleep like "I need scissors, tell me where we keep scissors" and "will our shoes take us far enough?"). He is stronger each day. I am stronger each day.
No one prepares you for where love will take you. You will end up where you are supposed to be, but you'll only be able to learn by doing. Nothing can prepare you, not a farm upbringing, or years of child care, for caring for an adult. I know my stomach will get stronger and despite it all (the joy, the horrors, the unknowns, the hilarity at times of my inadequacies at first try's at changing, cleaning up accidents, and bathing him) I'm exactly where I was destined. Difficult is part of every great story if matched with endurance and love.
Lately I'm on the side of love being given to us in greater amounts than I can give back. Our tough days are being matched with tenacious love. I'm just so thankful.
“Well, I don’t know what will happen now. We’ve got some difficult days ahead. But it doesn’t matter with me now. Because I’ve been to the mountaintop. And I don’t mind. Like any man, I would like to live a long life. Longevity has its place. But I’m not concerned about that now. I just want to do God’s will. And He’s allowed me to go up to the mountain. And I’ve looked over. And I’ve seen the promised land. I may not get there with you. But I want you to know tonight, that we, as a people will get to the promised land. And I’m happy, tonight. I’m not worried about anything. I’m not fearing any man. Mine eyes have seen the glory of the coming of the Lord.” MLK
1967 marked the year of the historical case Loving v. Virginia that made interracial marriage legal across the U.S. One year later, we would lose the love warrior Martin Luther King, Jr. through violence. Yet it wouldn't be until 2000 (the year Wil and I got married) that the last state, Alabama, would officially legalize interracial marriage. Not a day goes by that I am not thankful for the fact I was able to fall in love and marry the man for whom I was destined. It's been less than half a decade since such a violent part of our past was becoming history.
I wish I could say that we have never experienced discrimination in our marriage. Growing up in small town white America I'm not sure I had experienced much before Wil. Certainly not much up close and in my face. Some of our early years together, and the varying opinions and first hand experiences about our choice, made us that much more committed and bonded. Today almost 15% of new marriages are mixed matches. Yet nearly once a day in the hospital or nursing home I would have staff ask "and you are?" Many still just expect you to be with someone similar. It was our unseen similarities though, of faith, world perspective, and moral compass that attracted us. It's been our differences that make our marriage strong, well suited, complicated at times, and always fresh. Today I'm happy to be at home with Wil. Indebted to the visionaries who marched with love and passion despite the dangers. I'm without adequate words, but thankful all the same. We should each go out and do something in love today.
Update: We are on our second full day home. We're both tired and adjusting to home life. Yesterday Wil was up and around at least 8 times. His endurance is still at about 30 minute intervals when he is upright. But he is navigating the house with his walker, attempting the bathroom and having some success, eating well, sleeping fair-good at night (some occasional funny questions in the middle of the night when he is half asleep like "I need scissors, tell me where we keep scissors" and "will our shoes take us far enough?"). He is stronger each day. I am stronger each day.
No one prepares you for where love will take you. You will end up where you are supposed to be, but you'll only be able to learn by doing. Nothing can prepare you, not a farm upbringing, or years of child care, for caring for an adult. I know my stomach will get stronger and despite it all (the joy, the horrors, the unknowns, the hilarity at times of my inadequacies at first try's at changing, cleaning up accidents, and bathing him) I'm exactly where I was destined. Difficult is part of every great story if matched with endurance and love.
Lately I'm on the side of love being given to us in greater amounts than I can give back. Our tough days are being matched with tenacious love. I'm just so thankful.
Saturday, January 18, 2014
Happy Thanksgiving
Jenny here.
The last holiday I feel like I remember was Halloween. I adore Halloween. Wil puts up with me and my antics and over the top decorations. He even does cheesy couple costumes that look ridiculous on a man his size. He shows concern over my need for perfect themed food. That's love.
This year, in the midst of chasing the diagnosis, in my gut there was not necessarily a negative feeling, but something I can only describe as a knowing that Wil had cancer. Sure, the idea had been thrown out, taken back, tossed around. But as fall came closer I had this real feeling that life was about to change. Between grief and denial I threw myself at Halloween, spent hours researching do it yourself decorations I didn't already have (that included Craigslist mannequin trauma to him...it's a good story for another time!) and even more hours sorting out my stash of decorations and literally decking every inch of the house. I self medicated with Halloween I joked. It was more than that though. I never told Wil, but I had this sense that this would be our last Halloween party for awhile because the ground underneath our feet was starting to shift. Our last normal of 2013. Right before our party we had met with yet another specialist to talk about another biopsy. So I cut out more bats and hung more cobwebs and spiders and sheets. Grasping onto what pieces of our life B.C. that I could.
I was happy the day of our party. It was good to see family and friends. Wil's November biopsy was just hanging though, suspended and intertwined in it all. I really felt pretty numb. It's the last recognizable holiday though.
Have you ever been driving down the highway, 80 miles an hour, on a gorgeous day and just had a surreal experience...of feeling a stillness in sitting in your seat while feeling the bumps of the road, the mechanics of moving forward? Have you looked at the clouds, the buildings, the other cars you pass, and had that knowing that you are passing quickly by the landmarks, yet inside your car there is no motion? The outside is smoothly gliding past. You are being pulled forward by moving pieces that unless you are a mechanic you don't understand the exact how of what is happening.
That's the best way I can describe how I felt through Thanksgiving (my birthday), Christmas, New Years. Life in facilities can feel like a capsule of stillness. Like time is standing still. Yet looking out the "window" time is actually sliding by. You are being pulled forward even while feeling still. It feels like Halloween was a million months ago but also like it was yesterday.
Wil had his follow up appointment with his oncologist today.
Side note: I love UTSW. Have I said it enough? BMT clinic and BMT unit are an oasis. A private island of understanding. I have yet to meet a single doctor, nurse, tech, or patient that wasn't an instant blessing in this process. I am so appreciative of everyone who is keeping up with us. But it's these folks that get me, get Wil, get the process of muddling through this type of wicked cancer treatment like others can't. I know people want to understand. WE want you to be a part of the journey. All the same though, it's a journey I'm happy that most of you won't have to understand personally. Just as I'm blessed to not know first hand some of the different struggles you go through.
But BMT...With so few words we are connected with those strangers who we sit next to during follow ups. We are the newbies on the block. But we are starting to recognize faces and names of other families there. In BMT land you are there for years, so it's a much needed, make shift family of sorts. While I've seen some of the sickest folks with rare cases, I walk away inspired, uplifted, and understood. Today I lived vicariously through Cathy who is on year 2 of treatment, 150+ transfusions, and monthly trips to the Mayo Clinic, to Minnesota, to my homeland. They had trouble getting any vein to take blood from today because she has been stuck so many times. But while the nurses tried all their tricks, in beautiful detail she described the month of September in Rochester, as she watched the trees outside her hotel window turn from green to brilliant to brown to fall.
That's a long intro to what I really wanted to say when I was thinking about this post on my way home from work. What I wanted to say is that today, January 18th, Wil is coming home. 9 weeks in captivity are done.
No more holding on to Halloween memories. Thanksgiving has finally arrived.
Wil will be home for 3-4 weeks to finish liver recovery. His bilirubin was 2.7. While I had thought it was at 15 at one point, his oncologist showed me it had been in the 20's! Our goal is to get to 1. He will return in 2 weeks for blood work but is being discharged on one medication and no insulin. Amazing. He will continue PT to gain strength. Then folks, it begins again.
The new regime of chemo will include 2 alternating cocktails (round A and round B). Each round will be 3 weeks, with 5 days inpatient each round while he is administered the drugs that we are counting on to save his life.
Until then, counts are good, which will allow for visitors, puppy cuddles, kid play time, and just lots of home hermit happiness. Wil is nervous. He has been in captivity so long the outside world is anxiety producing. I couldn't be more excited. In 14 hours my life, my love, will be back under home shingles where he belongs. Happy Thanksgiving.
The last holiday I feel like I remember was Halloween. I adore Halloween. Wil puts up with me and my antics and over the top decorations. He even does cheesy couple costumes that look ridiculous on a man his size. He shows concern over my need for perfect themed food. That's love.
This year, in the midst of chasing the diagnosis, in my gut there was not necessarily a negative feeling, but something I can only describe as a knowing that Wil had cancer. Sure, the idea had been thrown out, taken back, tossed around. But as fall came closer I had this real feeling that life was about to change. Between grief and denial I threw myself at Halloween, spent hours researching do it yourself decorations I didn't already have (that included Craigslist mannequin trauma to him...it's a good story for another time!) and even more hours sorting out my stash of decorations and literally decking every inch of the house. I self medicated with Halloween I joked. It was more than that though. I never told Wil, but I had this sense that this would be our last Halloween party for awhile because the ground underneath our feet was starting to shift. Our last normal of 2013. Right before our party we had met with yet another specialist to talk about another biopsy. So I cut out more bats and hung more cobwebs and spiders and sheets. Grasping onto what pieces of our life B.C. that I could.
I was happy the day of our party. It was good to see family and friends. Wil's November biopsy was just hanging though, suspended and intertwined in it all. I really felt pretty numb. It's the last recognizable holiday though.
Have you ever been driving down the highway, 80 miles an hour, on a gorgeous day and just had a surreal experience...of feeling a stillness in sitting in your seat while feeling the bumps of the road, the mechanics of moving forward? Have you looked at the clouds, the buildings, the other cars you pass, and had that knowing that you are passing quickly by the landmarks, yet inside your car there is no motion? The outside is smoothly gliding past. You are being pulled forward by moving pieces that unless you are a mechanic you don't understand the exact how of what is happening.
That's the best way I can describe how I felt through Thanksgiving (my birthday), Christmas, New Years. Life in facilities can feel like a capsule of stillness. Like time is standing still. Yet looking out the "window" time is actually sliding by. You are being pulled forward even while feeling still. It feels like Halloween was a million months ago but also like it was yesterday.
Wil had his follow up appointment with his oncologist today.
Side note: I love UTSW. Have I said it enough? BMT clinic and BMT unit are an oasis. A private island of understanding. I have yet to meet a single doctor, nurse, tech, or patient that wasn't an instant blessing in this process. I am so appreciative of everyone who is keeping up with us. But it's these folks that get me, get Wil, get the process of muddling through this type of wicked cancer treatment like others can't. I know people want to understand. WE want you to be a part of the journey. All the same though, it's a journey I'm happy that most of you won't have to understand personally. Just as I'm blessed to not know first hand some of the different struggles you go through.
But BMT...With so few words we are connected with those strangers who we sit next to during follow ups. We are the newbies on the block. But we are starting to recognize faces and names of other families there. In BMT land you are there for years, so it's a much needed, make shift family of sorts. While I've seen some of the sickest folks with rare cases, I walk away inspired, uplifted, and understood. Today I lived vicariously through Cathy who is on year 2 of treatment, 150+ transfusions, and monthly trips to the Mayo Clinic, to Minnesota, to my homeland. They had trouble getting any vein to take blood from today because she has been stuck so many times. But while the nurses tried all their tricks, in beautiful detail she described the month of September in Rochester, as she watched the trees outside her hotel window turn from green to brilliant to brown to fall.
That's a long intro to what I really wanted to say when I was thinking about this post on my way home from work. What I wanted to say is that today, January 18th, Wil is coming home. 9 weeks in captivity are done.
No more holding on to Halloween memories. Thanksgiving has finally arrived.
Wil will be home for 3-4 weeks to finish liver recovery. His bilirubin was 2.7. While I had thought it was at 15 at one point, his oncologist showed me it had been in the 20's! Our goal is to get to 1. He will return in 2 weeks for blood work but is being discharged on one medication and no insulin. Amazing. He will continue PT to gain strength. Then folks, it begins again.
The new regime of chemo will include 2 alternating cocktails (round A and round B). Each round will be 3 weeks, with 5 days inpatient each round while he is administered the drugs that we are counting on to save his life.
Until then, counts are good, which will allow for visitors, puppy cuddles, kid play time, and just lots of home hermit happiness. Wil is nervous. He has been in captivity so long the outside world is anxiety producing. I couldn't be more excited. In 14 hours my life, my love, will be back under home shingles where he belongs. Happy Thanksgiving.
Wednesday, January 15, 2014
Evolve and Leap
Jenny here.
First, updates on Wil. Every day he is improving! He has used the bathroom with minimal assistance twice, is feeding himself every meal, talking a little more each day, and using a walker for short distances in therapy. Yesterday we had labs taken at UTSW. His oncologist ended up being sick so we will see her on Friday with more labs. Bilirubin is at 2.7!!! And once it hits 1.3 they will say his liver is at normal again. Hemoglobin and potassium were a little lower but not concerning. White counts holding steady. Most likely Friday we will discuss chemo treatment plan.
At this point I'm not sure if Wil will be home, at the nursing home, or at UTSW next week. It's a toss up depending on timing and course of treatment. Fingers crossed...for no particular preferred outcome but just for the right one (ok, maybe fingers crossed to be out of the SNF!).
This past summer my niece said something to me that changed my life. She said "Auntie, sometimes you just have to let things evolve." Age 6. Sure, it was about Thai iced tea and how if she gave things a chance, feelings change. I asked her what it meant to evolve and she said "things change over time." I'm more or less a take life into my own hands and make it happen, rely on yourself life perspective. But no matter what, life is evolving on its own, and quickly these days. I can fight it or go with it. It will always surprise me if I open myself up. Kids are so smart.
Yesterday I spent 11 hours with Wil between the doctor appointment and just quality time with him and visitors. I don't see him much over the weekend so it was great just to be there. He had a great day. For the first time in a month, we have been able to have short conversations about nitty gritty things...conversations about how to manage life, cancer, choices, faith, money, and everything in between. Wil has always balanced me out. I tend to take some chances, he tends to ground me. Lately those roles have changed because I get scared to make the wrong move. Sometimes each choice feels like a leap without a net.
Then it came to the conversation about my work. The past month I have not been at my contract job. It has made life bearable and some sort of balance possible. For the past few years I have been working 70 hours a week. With my regular job and private practice I work about 45 hours a week. I've continued working those two throughout Wil's treatment but had not been working my 20-25 hours of contract. Strangely, working so much before made 40-50 hours, plus Wil's treatment, feel manageable. I mentioned to Wil yesterday that I needed to return. He started to cry. I said I just want to do everything I can do to make it. He knows returning would mean several days of doubles and me not seeing him. Wil, my no risk taking partner said "No, don't do it. It will be ok. Have faith." He told me he worries about me. The same thing that several others have echoed to me. Wil is priority now and I can't do it all.
In my heart I have been struggling for weeks. My contract work pays our rent. His disability should be in effect by June if everything goes as planned which would then take it's place. My other work covers everything else. While I have understood Wil's desire for me to quit, I've been so fearful. How will it work? We have survived 2 months through the kindness of family and friends and with a few new referrals to private practice. We have been blessed. Over and over and over a net has appeared.
When I saw Wil tear up, my struggle between making things happen in my life vs. letting it evolve based on faith was confirmed. I have to quit my contract work. Life B.C. I could work 70 hours and never see my family. Last year my only wish was to have more time with Wil. Life after cancer, I just can't be away from him that much. Clarity. Evolution of my faith. So I emailed my supervisor who has been very supportive and was honest. And I quit today. I will finish out some things next week and then focus the energy I had spent worrying about that job into our journey.
No lie, my stomach is in knots but my heart is at peace. Wil's right. It will work out. Please pray for new clients and my practice in the coming months..of my upper fee level...and courage for me.
Leap.
First, updates on Wil. Every day he is improving! He has used the bathroom with minimal assistance twice, is feeding himself every meal, talking a little more each day, and using a walker for short distances in therapy. Yesterday we had labs taken at UTSW. His oncologist ended up being sick so we will see her on Friday with more labs. Bilirubin is at 2.7!!! And once it hits 1.3 they will say his liver is at normal again. Hemoglobin and potassium were a little lower but not concerning. White counts holding steady. Most likely Friday we will discuss chemo treatment plan.
At this point I'm not sure if Wil will be home, at the nursing home, or at UTSW next week. It's a toss up depending on timing and course of treatment. Fingers crossed...for no particular preferred outcome but just for the right one (ok, maybe fingers crossed to be out of the SNF!).
This past summer my niece said something to me that changed my life. She said "Auntie, sometimes you just have to let things evolve." Age 6. Sure, it was about Thai iced tea and how if she gave things a chance, feelings change. I asked her what it meant to evolve and she said "things change over time." I'm more or less a take life into my own hands and make it happen, rely on yourself life perspective. But no matter what, life is evolving on its own, and quickly these days. I can fight it or go with it. It will always surprise me if I open myself up. Kids are so smart.
Yesterday I spent 11 hours with Wil between the doctor appointment and just quality time with him and visitors. I don't see him much over the weekend so it was great just to be there. He had a great day. For the first time in a month, we have been able to have short conversations about nitty gritty things...conversations about how to manage life, cancer, choices, faith, money, and everything in between. Wil has always balanced me out. I tend to take some chances, he tends to ground me. Lately those roles have changed because I get scared to make the wrong move. Sometimes each choice feels like a leap without a net.
Then it came to the conversation about my work. The past month I have not been at my contract job. It has made life bearable and some sort of balance possible. For the past few years I have been working 70 hours a week. With my regular job and private practice I work about 45 hours a week. I've continued working those two throughout Wil's treatment but had not been working my 20-25 hours of contract. Strangely, working so much before made 40-50 hours, plus Wil's treatment, feel manageable. I mentioned to Wil yesterday that I needed to return. He started to cry. I said I just want to do everything I can do to make it. He knows returning would mean several days of doubles and me not seeing him. Wil, my no risk taking partner said "No, don't do it. It will be ok. Have faith." He told me he worries about me. The same thing that several others have echoed to me. Wil is priority now and I can't do it all.
In my heart I have been struggling for weeks. My contract work pays our rent. His disability should be in effect by June if everything goes as planned which would then take it's place. My other work covers everything else. While I have understood Wil's desire for me to quit, I've been so fearful. How will it work? We have survived 2 months through the kindness of family and friends and with a few new referrals to private practice. We have been blessed. Over and over and over a net has appeared.
When I saw Wil tear up, my struggle between making things happen in my life vs. letting it evolve based on faith was confirmed. I have to quit my contract work. Life B.C. I could work 70 hours and never see my family. Last year my only wish was to have more time with Wil. Life after cancer, I just can't be away from him that much. Clarity. Evolution of my faith. So I emailed my supervisor who has been very supportive and was honest. And I quit today. I will finish out some things next week and then focus the energy I had spent worrying about that job into our journey.
No lie, my stomach is in knots but my heart is at peace. Wil's right. It will work out. Please pray for new clients and my practice in the coming months..of my upper fee level...and courage for me.
Leap.
Saturday, January 11, 2014
Under Its Roof
Jenny here.
I love quotes but, lately, I haven't changed my quote board at work. Not since Wil went into the hospital.
There will always be dates I never forget. November 11, 2013. The last day I ate at home with Wil, woke up next to him, fussed about housework, listened to him laugh at podcasts, and so many other things. When I woke up that day, 3 days after his diagnosis, I had no idea that night we would be in the ER, looking at admit. Earlier that day I had talked to another oncologist who was a friend of a friend, since we had not been happy with the one we had at the time. He said "if he were my patient, I would want your husband admitted right away. Don't wait too long with this diagnosis." 6 hours later Wil would be unable to safely walk up the stairs at UTA for class, 8 hours later he would be in the ER. 3 days later he would be on BMT unit. For several weeks the dogs would pace the floors looking for him. I would forget to take out the trash on the right days, the leaves would fall and not be raked, and I would spend only sleeping hours at home.
Now, 2 months later, he has not stepped back into our house. When he left there were still Halloween decs everywhere. The dogs have stopped looking for him, although I still leave a sweatshirt of his on the bed they like to lay on. I have had to come to a place of new normal, even with the quiet at the house I have not come to embrace yet. I expect he may not be home for another few months if he is admitted back for chemo.
The last few days, his progress has continued at a steady pace. Eating, talking, sitting up longer. It's interesting to me that when I am in the valley I don't cry much. It's head first into the wind. Yesterday, with the wind to my back, tears flow again. Increases in hope can let the reality of the real diagnosis come back in. He has aggressive cancer and he did not tolerate treatment well.
I had this idea, B.C., that hope was a place that was a warm and cozy house, with a fireplace, soup, and a sense of calm.
On my quote board at work, this is the quote that has remained:
"The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance, but live right in it, under its roof." Barbara Kingsolver
I think I have kept it, wishing and wondering what I needed to do to feel hope in the way I had imagined it--calm, safe, warm, positive. Don't get me wrong, there have been moments when I felt that. Today, he ate great again. He sat on the edge of the bed with me for the 20 minutes I had in between jobs to see him, put his hand on my knee, and for the first time almost a month said "I love you" clearly. I know he has tried to say before, I have seen it in his face at times. Today anyone could have understood it. Today hope felt warm.
When I look at how hope, as a word, is defined, there are no words like warm, safe, and cozy. The words that pop up are want, wish, desire, chance, likelihood, confidence. Knowing this makes me feel more secure because I know my darker posts are harder for me to post, harder for people to comment on, and that people want to make sure I am still hopeful..in turn I sometimes edit out the extent of the darkness some days bring so people don't worry.
Hope. Hope can be and I can feel an array of feelings. Even on the darkest days, I still have a want and desire for Wil to recover. I feel sad, scared, mad, and crazy sometimes and it doesn't erase the chance...the possibility that we will beat this thing. It's that up close hope that keeps me going, even when the walls of my dream hope house seem to crumble or the porch light goes out for a few days. It shelters me even though a draft may come through. I'm living under hope's roof every day that I get up, every time I cry, laugh, scream, feel defeated, or relish in success.
I promise to post some pictures tomorrow of my guy. Amazing what a few days can do...
I love quotes but, lately, I haven't changed my quote board at work. Not since Wil went into the hospital.
There will always be dates I never forget. November 11, 2013. The last day I ate at home with Wil, woke up next to him, fussed about housework, listened to him laugh at podcasts, and so many other things. When I woke up that day, 3 days after his diagnosis, I had no idea that night we would be in the ER, looking at admit. Earlier that day I had talked to another oncologist who was a friend of a friend, since we had not been happy with the one we had at the time. He said "if he were my patient, I would want your husband admitted right away. Don't wait too long with this diagnosis." 6 hours later Wil would be unable to safely walk up the stairs at UTA for class, 8 hours later he would be in the ER. 3 days later he would be on BMT unit. For several weeks the dogs would pace the floors looking for him. I would forget to take out the trash on the right days, the leaves would fall and not be raked, and I would spend only sleeping hours at home.
Now, 2 months later, he has not stepped back into our house. When he left there were still Halloween decs everywhere. The dogs have stopped looking for him, although I still leave a sweatshirt of his on the bed they like to lay on. I have had to come to a place of new normal, even with the quiet at the house I have not come to embrace yet. I expect he may not be home for another few months if he is admitted back for chemo.
The last few days, his progress has continued at a steady pace. Eating, talking, sitting up longer. It's interesting to me that when I am in the valley I don't cry much. It's head first into the wind. Yesterday, with the wind to my back, tears flow again. Increases in hope can let the reality of the real diagnosis come back in. He has aggressive cancer and he did not tolerate treatment well.
I had this idea, B.C., that hope was a place that was a warm and cozy house, with a fireplace, soup, and a sense of calm.
On my quote board at work, this is the quote that has remained:
"The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance, but live right in it, under its roof." Barbara Kingsolver
I think I have kept it, wishing and wondering what I needed to do to feel hope in the way I had imagined it--calm, safe, warm, positive. Don't get me wrong, there have been moments when I felt that. Today, he ate great again. He sat on the edge of the bed with me for the 20 minutes I had in between jobs to see him, put his hand on my knee, and for the first time almost a month said "I love you" clearly. I know he has tried to say before, I have seen it in his face at times. Today anyone could have understood it. Today hope felt warm.
When I look at how hope, as a word, is defined, there are no words like warm, safe, and cozy. The words that pop up are want, wish, desire, chance, likelihood, confidence. Knowing this makes me feel more secure because I know my darker posts are harder for me to post, harder for people to comment on, and that people want to make sure I am still hopeful..in turn I sometimes edit out the extent of the darkness some days bring so people don't worry.
Hope. Hope can be and I can feel an array of feelings. Even on the darkest days, I still have a want and desire for Wil to recover. I feel sad, scared, mad, and crazy sometimes and it doesn't erase the chance...the possibility that we will beat this thing. It's that up close hope that keeps me going, even when the walls of my dream hope house seem to crumble or the porch light goes out for a few days. It shelters me even though a draft may come through. I'm living under hope's roof every day that I get up, every time I cry, laugh, scream, feel defeated, or relish in success.
I promise to post some pictures tomorrow of my guy. Amazing what a few days can do...
Friday, January 10, 2014
Flow
Jenny here.
I'm sitting here watching Wil sleep. For the first time in 2 months, he moved over and wanted me to take a nap with him. I laid there for awhile, but it's hard to take my eyes off him.
We were in such a holding pattern for the last 2 weeks. Even his blood work was pretty consistently not improving. But this week...it's amazing the changes that we are seeing. If you saw Wil between Christmas and the first few days of 2014, you would be surprised at how much! He continues to have more energy, he is alert, his moods have stabilized, and that mouth....the source of so much defeat...is now starting to move and work more normally. His speech is slowly improving and he is starting to communicate. It is still a lot of work, but he can get 2-3 word sentences out if he concentrates. AMAZING. He is eating and, drum roll, CHEWING slowly. Wil wanted Taco Bell today. I was not sure, but got him a chicken burrito. He ate the entire thing, bite by bite. Once he is back on chemo, it will be an immunosuppressed diet, so no outside food. He's enjoying a few treats until then.
We were at UTSW for labs again today. The whole process worked out so much more smoothly this time and he had no O2 issues, VIP treatment straight back to get blood and a recliner to wait for results. His kidneys are back to normal, white counts holding steady, no transfusions of platelets needed. And for the big number we are looking at, his bilirubin or liver number, he is now at 3.9. Downward trend continues! 3.1 counts to go until normal. This, we are told, is the main reason everything is improving this week. Take care of your liver folks, although it can recover, its SO very important.
His main oncologist is back next week from vacation and we will see her Tuesday. Her PA said, "now we will start the art of medicine." Because the typical protocol damaged his liver, Wil may just get his very own special cocktail of chemo, tailored to him. Who would have thought. My guy is one of a kind in every way.
As for me, this is the happiest day in months. He looks, he half smiles, he sleeps, he eats. He is not back to where he was 2 months ago, but I feel like we have crawled out of the valley, maybe in a wheelchair and with support of a walker, but crawled out all the same. Chemo is no joke, but compared to the liver and steroids catastrophe, he and I are looking forward to maybe just the normal exhaustion, fatigue, low appetite of cancer treatment. The very things we were so afraid of in the beginning, would be a welcomed new chapter because we will be on our way to getting that cancer in remission.
I joke that I am a woman on the edge. It's no lie. Some days I am on the edge of collapse or crazy town. Then other days I am on the edge of a transformation. I am bull headed, analytical, and hard working. Until recently, I am not sure I would have said I am assertive because I tend to be a people pleaser. But when life clarifies what is important, some risks don't seem as big. Some problems aren't even a cause of stress anymore. I'm finding more space these days to speak my own truth with less worry.
I'm in awe of the ebb and flow of life. The light, the dark. The opposites. The contrasts. How It's OK to ask for what you need and not back down. Advocate for yourself. Allow yourself to be held up by others while you fight the big fight. Stand your ground when you know it's the right thing.
Each day I find something new in this journey. 2 weeks ago it was a lot of pain. But life continues to flow. I never thought I was fighter, until recently. Onward and upward.
I'm sitting here watching Wil sleep. For the first time in 2 months, he moved over and wanted me to take a nap with him. I laid there for awhile, but it's hard to take my eyes off him.
We were in such a holding pattern for the last 2 weeks. Even his blood work was pretty consistently not improving. But this week...it's amazing the changes that we are seeing. If you saw Wil between Christmas and the first few days of 2014, you would be surprised at how much! He continues to have more energy, he is alert, his moods have stabilized, and that mouth....the source of so much defeat...is now starting to move and work more normally. His speech is slowly improving and he is starting to communicate. It is still a lot of work, but he can get 2-3 word sentences out if he concentrates. AMAZING. He is eating and, drum roll, CHEWING slowly. Wil wanted Taco Bell today. I was not sure, but got him a chicken burrito. He ate the entire thing, bite by bite. Once he is back on chemo, it will be an immunosuppressed diet, so no outside food. He's enjoying a few treats until then.
We were at UTSW for labs again today. The whole process worked out so much more smoothly this time and he had no O2 issues, VIP treatment straight back to get blood and a recliner to wait for results. His kidneys are back to normal, white counts holding steady, no transfusions of platelets needed. And for the big number we are looking at, his bilirubin or liver number, he is now at 3.9. Downward trend continues! 3.1 counts to go until normal. This, we are told, is the main reason everything is improving this week. Take care of your liver folks, although it can recover, its SO very important.
His main oncologist is back next week from vacation and we will see her Tuesday. Her PA said, "now we will start the art of medicine." Because the typical protocol damaged his liver, Wil may just get his very own special cocktail of chemo, tailored to him. Who would have thought. My guy is one of a kind in every way.
As for me, this is the happiest day in months. He looks, he half smiles, he sleeps, he eats. He is not back to where he was 2 months ago, but I feel like we have crawled out of the valley, maybe in a wheelchair and with support of a walker, but crawled out all the same. Chemo is no joke, but compared to the liver and steroids catastrophe, he and I are looking forward to maybe just the normal exhaustion, fatigue, low appetite of cancer treatment. The very things we were so afraid of in the beginning, would be a welcomed new chapter because we will be on our way to getting that cancer in remission.
I joke that I am a woman on the edge. It's no lie. Some days I am on the edge of collapse or crazy town. Then other days I am on the edge of a transformation. I am bull headed, analytical, and hard working. Until recently, I am not sure I would have said I am assertive because I tend to be a people pleaser. But when life clarifies what is important, some risks don't seem as big. Some problems aren't even a cause of stress anymore. I'm finding more space these days to speak my own truth with less worry.
I'm in awe of the ebb and flow of life. The light, the dark. The opposites. The contrasts. How It's OK to ask for what you need and not back down. Advocate for yourself. Allow yourself to be held up by others while you fight the big fight. Stand your ground when you know it's the right thing.
Each day I find something new in this journey. 2 weeks ago it was a lot of pain. But life continues to flow. I never thought I was fighter, until recently. Onward and upward.
Wednesday, January 8, 2014
Rain
Jenny here.
Today marks 2 months since the diagnosis. And funny enough, since we have a high copay for the SNF, it's the day we hit our 2014 max out of pocket. So I guess I will just have a bill from one facility for the year. I am so blessed though. My head is above water in all areas of life at this moment. The medical bills will get paid in time.
It's a rainy day in DFW. Wil has had 3 great days in a row! His color looks better, he's alert, more words are understandable, and he's eating with small chews! My only wish is that they got him out of bed for more than just PT at the SNF. When they do his therapy he uses the bathroom with assistance and he feels good. It's hard work but he feels good! But that's 30-60 minutes a day, 5 days a week.
Today I cooked baked ziti (mostly zucchini because it's softer) which is one of Wil's favorites. I took some to the SNF and he devoured 80% of a 3x3x3" square plus an Ensure. He let me lay my head on his chest. We looked at the slideshow I was putting together for the blog. It was a great dinner date.
The link below is for a slideshow. Some pics may be familiar, some I haven't shared before. We are still so in awe of the kindness that our virtual community showers us with through the storm. Much love to you all.
The First 60
Today marks 2 months since the diagnosis. And funny enough, since we have a high copay for the SNF, it's the day we hit our 2014 max out of pocket. So I guess I will just have a bill from one facility for the year. I am so blessed though. My head is above water in all areas of life at this moment. The medical bills will get paid in time.
It's a rainy day in DFW. Wil has had 3 great days in a row! His color looks better, he's alert, more words are understandable, and he's eating with small chews! My only wish is that they got him out of bed for more than just PT at the SNF. When they do his therapy he uses the bathroom with assistance and he feels good. It's hard work but he feels good! But that's 30-60 minutes a day, 5 days a week.
Today I cooked baked ziti (mostly zucchini because it's softer) which is one of Wil's favorites. I took some to the SNF and he devoured 80% of a 3x3x3" square plus an Ensure. He let me lay my head on his chest. We looked at the slideshow I was putting together for the blog. It was a great dinner date.
The link below is for a slideshow. Some pics may be familiar, some I haven't shared before. We are still so in awe of the kindness that our virtual community showers us with through the storm. Much love to you all.
The First 60
Tuesday, January 7, 2014
Island Life
Jenny here.
January 6, 2014. Today is the 7th anniversary of my dad's death. I miss him more every year but I've also felt him closer in the last few months as I transition from being just a wife into also being a caregiver. My dad struggled with his health and was disabled most of my life. Life as we know it right now was my biggest fear come true yet, somehow, he prepared me for it. I'm not sure I'd be standing upright these days if I didn't have the example of tenacity and joy that he had through it all. It makes this anniversary a little more tender and difficult. It's also the first anniversary I've faced after my other grandpa passed away. It's made me feel like I'm running low on important men in my life.
Wil has been at his SNF a little over a week now. Lately I feel bottomed out. While Wil was at the hospital, each day was filled with labs, tons of services, and support. Have I mentioned I love UTSW? It had become like an extended family, crossing paths with familiar staff and other patients. Our whole focus was on getting Wil well and even as he had adverse reactions, people were hopeful. Then we moved to the SNF...Where it feels like people go to die. In my head I know Wil is still fighting and the SNF is temporary. But many of the other residents are not, and it's depressing.
It's hard to admit that I hate visiting him there, but I do. I still go every day. I want to see him. Every day I end up being glad I went. Yet I dread seeing him there. It's just out of this world unbelievable to me that this is my husband. I have such a strong point of reference as to the wonderful human being he has always been. At times, though, I am challenged to see the man I married. He's in there somewhere. He just looks like a patient more than a partner. I just miss him so much and the little things you take for granted (and that tear you apart at times). I miss being able to have a conversation with him about anything or nothing, because now I talk and he tries to respond but often it takes 5 tries to sort of get what he means. I miss having him hug me back, kiss me back, smile. I miss texts throughout the day and having someone always check that I made it to my destination or waiting for me at home. I even miss him droning on about math and math related jokes. I know we are both lonely a lot and I know he worries about me. He says "this is hard for you." Its funny how keen he is at nonverbal cues now that talking is hard.
I was trying to explain this new phase of the journey to a friend yesterday. How can a journey you are on together be so lonely? It was something I didn't expect. I knew I would be taking on a big, new role. I knew it would be hard. But unlike any other challenge we've faced together, this time around we have such different, distinct roles. We have the same goal--his recovery--but our roads couldn't be more different. It's a strange feeling to want the same thing but be on two separate islands struggling to get there. In other hard times we could help each other or even share tasks, talk it through. Now much of what I need to do on my end, I have to do alone. He can't help, even if he wanted to. His therapy and recovery I can't do for him. We both have the task at coming to terms with our new life, however, at this point we don't have a way to talk about it equally. I'm rambling through an explanation here that I'm not sure I can adequately capture. It's just a strange feeling.
But just as I felt like I was free falling, things have started to look up in the last two days. A supply drop to my island, just in time.
Wil is making progress on eating. He's been upgraded to ground food and it looks much more appealing. He is up to about 12+ bites per meal plus his nutrition shake. Last week was 3-4 bites. He has a little more energy and is awake more. For weeks he could barely keep his eyes open, now he sometimes looks right at me and is more social with visitors. Yesterday we saw a partial smile...the first in weeks. I think his sleep cycle is starting to return to normal too.
In terms of motor work, it's a slow process. He is progressing, but he's lost so much muscle tone this past month. And again, due to his size, no one other than the motor therapists are going to from give him an opportunity to be out of bed. For now he is supposed to be doing some exercises in bed, sitting on the edge of the bed to eat, etc. He sweats like crazy because it's all hard work. Combine the eating with sitting upright and you have a full body workout these days.
Today was his first outpatient follow up appointment at the cancer center with his oncology team. It was an adventure. Wil was transported via ambulance in his wheelchair at 12:30pm. We arrived at 1:00pm and checked in. Apparently, afternoons are busy there and our appointment had been booked wrong so labs were not drawn until 2:30. Mind you, Wil has not sat up straight for more than 30 min at a time for over a month. As he started to sweat and look pale I got worried and pushed for them to speed things up. Unlike other folks there, I'm guessing he was the only one coming from a facility. Everyone else was ambulatory and verbal, able to sign forms and drink coffee while they waited. His O2 had dropped significantly in the waiting time and they treated him with oxygen. We made a new plan for how to safely transport him for next time and getting him to the back to lay down to avoid this again.
All of it was worth the anxiety when we spoke with his oncologist's PA. His labs look great! His bilirubin, which had been 15 at the worst (normal is .8) is now at 5.4. We are making headway on that liver recovery! I pray it's back to normal in the coming weeks. Then we will be able to get back to the real fight...getting rid of that cancer. His only assignment between now and Friday at the next follow up is to get hydrated. He's not been drinking enough.
So little has gone as expected. I told the PA that the hardest parts are the unexpected. He looked at me and said "None of his treatment has gone as we expected. We are all frustrated with you." And they are committed to getting him back to chemo ASAP. It's just a waiting game. It's likely he will be readmitted to UTSW when it starts again. I am hoping he does...so he can be out of that SNF and back with our support crew.
Little by little, we're gonna do this...
January 6, 2014. Today is the 7th anniversary of my dad's death. I miss him more every year but I've also felt him closer in the last few months as I transition from being just a wife into also being a caregiver. My dad struggled with his health and was disabled most of my life. Life as we know it right now was my biggest fear come true yet, somehow, he prepared me for it. I'm not sure I'd be standing upright these days if I didn't have the example of tenacity and joy that he had through it all. It makes this anniversary a little more tender and difficult. It's also the first anniversary I've faced after my other grandpa passed away. It's made me feel like I'm running low on important men in my life.
Wil has been at his SNF a little over a week now. Lately I feel bottomed out. While Wil was at the hospital, each day was filled with labs, tons of services, and support. Have I mentioned I love UTSW? It had become like an extended family, crossing paths with familiar staff and other patients. Our whole focus was on getting Wil well and even as he had adverse reactions, people were hopeful. Then we moved to the SNF...Where it feels like people go to die. In my head I know Wil is still fighting and the SNF is temporary. But many of the other residents are not, and it's depressing.
It's hard to admit that I hate visiting him there, but I do. I still go every day. I want to see him. Every day I end up being glad I went. Yet I dread seeing him there. It's just out of this world unbelievable to me that this is my husband. I have such a strong point of reference as to the wonderful human being he has always been. At times, though, I am challenged to see the man I married. He's in there somewhere. He just looks like a patient more than a partner. I just miss him so much and the little things you take for granted (and that tear you apart at times). I miss being able to have a conversation with him about anything or nothing, because now I talk and he tries to respond but often it takes 5 tries to sort of get what he means. I miss having him hug me back, kiss me back, smile. I miss texts throughout the day and having someone always check that I made it to my destination or waiting for me at home. I even miss him droning on about math and math related jokes. I know we are both lonely a lot and I know he worries about me. He says "this is hard for you." Its funny how keen he is at nonverbal cues now that talking is hard.
I was trying to explain this new phase of the journey to a friend yesterday. How can a journey you are on together be so lonely? It was something I didn't expect. I knew I would be taking on a big, new role. I knew it would be hard. But unlike any other challenge we've faced together, this time around we have such different, distinct roles. We have the same goal--his recovery--but our roads couldn't be more different. It's a strange feeling to want the same thing but be on two separate islands struggling to get there. In other hard times we could help each other or even share tasks, talk it through. Now much of what I need to do on my end, I have to do alone. He can't help, even if he wanted to. His therapy and recovery I can't do for him. We both have the task at coming to terms with our new life, however, at this point we don't have a way to talk about it equally. I'm rambling through an explanation here that I'm not sure I can adequately capture. It's just a strange feeling.
But just as I felt like I was free falling, things have started to look up in the last two days. A supply drop to my island, just in time.
Wil is making progress on eating. He's been upgraded to ground food and it looks much more appealing. He is up to about 12+ bites per meal plus his nutrition shake. Last week was 3-4 bites. He has a little more energy and is awake more. For weeks he could barely keep his eyes open, now he sometimes looks right at me and is more social with visitors. Yesterday we saw a partial smile...the first in weeks. I think his sleep cycle is starting to return to normal too.
In terms of motor work, it's a slow process. He is progressing, but he's lost so much muscle tone this past month. And again, due to his size, no one other than the motor therapists are going to from give him an opportunity to be out of bed. For now he is supposed to be doing some exercises in bed, sitting on the edge of the bed to eat, etc. He sweats like crazy because it's all hard work. Combine the eating with sitting upright and you have a full body workout these days.
Today was his first outpatient follow up appointment at the cancer center with his oncology team. It was an adventure. Wil was transported via ambulance in his wheelchair at 12:30pm. We arrived at 1:00pm and checked in. Apparently, afternoons are busy there and our appointment had been booked wrong so labs were not drawn until 2:30. Mind you, Wil has not sat up straight for more than 30 min at a time for over a month. As he started to sweat and look pale I got worried and pushed for them to speed things up. Unlike other folks there, I'm guessing he was the only one coming from a facility. Everyone else was ambulatory and verbal, able to sign forms and drink coffee while they waited. His O2 had dropped significantly in the waiting time and they treated him with oxygen. We made a new plan for how to safely transport him for next time and getting him to the back to lay down to avoid this again.
All of it was worth the anxiety when we spoke with his oncologist's PA. His labs look great! His bilirubin, which had been 15 at the worst (normal is .8) is now at 5.4. We are making headway on that liver recovery! I pray it's back to normal in the coming weeks. Then we will be able to get back to the real fight...getting rid of that cancer. His only assignment between now and Friday at the next follow up is to get hydrated. He's not been drinking enough.
So little has gone as expected. I told the PA that the hardest parts are the unexpected. He looked at me and said "None of his treatment has gone as we expected. We are all frustrated with you." And they are committed to getting him back to chemo ASAP. It's just a waiting game. It's likely he will be readmitted to UTSW when it starts again. I am hoping he does...so he can be out of that SNF and back with our support crew.
Little by little, we're gonna do this...
Thursday, January 2, 2014
Mosaic
Jenny here. Happy New Year!
I realize it's taken a couple of days for an update and well wishes for 2014. The new year comes with such mixed feelings for both Wil and me. For months we have looked forward to closing out 2013. Not really in an attempt to rush life, but to feel the accomplishment of making it through a tough year. But it's also ended right in the middle of a nursing home, a twist no one thought was coming. There will be no resolutions this year...only hopes for continued energy to engage in fighting the fight for health, one day at a time. I will be so relieved when Wil can communicate more, eat, and walk.
It's been a big year. 2013 started out with major surgery for our chihuahua, with complications and surgery revisions...a move into a bigger house to help a relative relocate (and the relative going MIA and leaving us with added expenses)...Wil's 40th birthday...Wil's "back issues"...Wil being laid off...me being hit by a drunk driver and my car totaled...and then this fall with the diagnosis. Those are some of the facts of our year. The most challenging year of our our 13 year marriage.
But those facts are just details in between the otherwise good. I can't lie, we have been defined by the details at times. There were moments, oh so many moments, of sobbing in the shower and countless nights on hospital cots and not knowing what end is up. Brokenness. Feeling shattered to tiny pieces. Feeling afraid. Feeling angry. Feeling so many hues of emotions I didn't know existed. If there is one thing we do well at our house, however, it's picking up the pieces and making new plans. We are both pretty stubborn oldest children.
The great and not so great thing about being a therapist, during your own personal brokenness, is that you continue to have to push your stuff aside for the hour you are with your client. Some days are easier than others. Some days this feels like a great relief! They don't know my situation and I don't have to answer any questions. The hour is about them. I can just forget about my situation for a little while. No lie, I'm not on top of my game every moment like I would like to be and there are some times I struggle or think, with my humanness, "Seriously? You could have real issues like cancer." If you work in the field, you've been there. It doesn't mean I don't love my work, know that a problem is a problem, or not like my clients. It just is what it is. And I'm lucky to have great clinician friends I can debrief with so I keep it in check.
Other times there are inspired conversations that come from such a raw real place for me because, at times, my guard comes down more than usual. I'm a head type/analytical most days, but I'm coming from my heart lately. On the drive home or to Wil, sometimes the message of the session was the one I needed so much myself.
A great psychotherapist, Yalom, speaks of how we are all fellow travelers in this life. If we can harness that idea and combine it with compassion, we can truly see that all of us are not so unique, just at different points down the road. It allows us to tap into our authentic self, which is the best space to be in while helping others...because you are using yourself and the relationship to support them in an honest way. Everyone reading this is a fellow traveler. It's relationships that see us through the journey.
One of my last sessions of 2013 was a conversation about brokenness. If I break a beautiful vase, I can glue it back together. But it will never look the same. That piece of glass is changed. I can want it to be different. I can use as much glue as I want. It's cracked. Like 2013.
But there's an option B. I can take the pieces and reconstruct them...Give them meaning, any way I want to, and create a beautiful mosaic out of the shards. I can give meaning to pain and struggle and see something else that is not dangerous...but in fact beautiful, in ways I could not have known; we need to be broken open to create something even more beautiful in our lives.
So 2013...we survived! I found things in me I didn't know existed, found laughter in the middle of the storm, cried a lot, began a journey of healing (not just in the physical sense)...our mosaic is far from finished. Some days I break a little more, but we are trying to invest in the idea that with more and more interesting scraps will come a more vivid and wonderful work of art. This is only the beginning.
Update on Wil: Food is still a challenge but he's had 2 days where he ate a little more. He has started some therapy. It's been a slow process and taken a lot out of me to fight, fight, fight for the care he deserves. I've been very exhausted this week but took out time to see a movie with family and just sit on the couch and watch Sons of Anarchy, shutting my phone off for just a few hours. There's the twinge of "what if he needs me." He needs me 24/7. It's just not physically/emotionally/mentally possible. I'm working on kindness to myself.
He is still trying to get himself out of bed at night. Last night he ended up on the floor. He rolls his eyes at me and doesn't want to talk about the situation. It's frustrating for me because he's being stubborn. He wants to be back to normal and all this is taking so long. He keeps giving up BUT he tries again later. All I can do is shake me head and say "you're killing me smalls." There may be a sticker chart in his near future because he's taken to exaggerating about his effort (and then I get the real story from the therapists). He asked for it when he married a social worker that works with a lot of kids, right?
The clinic was calling Wil to set up his f/u so without knowing it we missed his appointment today (it was originally scheduled for tomorrow but they called him to change it....few more calls today and I think we have changed things so that I am primary contact). Now we are on the books for Monday afternoon. He will have a round of labs and see the doctor at that time.
Again, happiest of years to each of you.
http://www.youtube.com/watch?v=rAD-4XKBcmA
I realize it's taken a couple of days for an update and well wishes for 2014. The new year comes with such mixed feelings for both Wil and me. For months we have looked forward to closing out 2013. Not really in an attempt to rush life, but to feel the accomplishment of making it through a tough year. But it's also ended right in the middle of a nursing home, a twist no one thought was coming. There will be no resolutions this year...only hopes for continued energy to engage in fighting the fight for health, one day at a time. I will be so relieved when Wil can communicate more, eat, and walk.
It's been a big year. 2013 started out with major surgery for our chihuahua, with complications and surgery revisions...a move into a bigger house to help a relative relocate (and the relative going MIA and leaving us with added expenses)...Wil's 40th birthday...Wil's "back issues"...Wil being laid off...me being hit by a drunk driver and my car totaled...and then this fall with the diagnosis. Those are some of the facts of our year. The most challenging year of our our 13 year marriage.
But those facts are just details in between the otherwise good. I can't lie, we have been defined by the details at times. There were moments, oh so many moments, of sobbing in the shower and countless nights on hospital cots and not knowing what end is up. Brokenness. Feeling shattered to tiny pieces. Feeling afraid. Feeling angry. Feeling so many hues of emotions I didn't know existed. If there is one thing we do well at our house, however, it's picking up the pieces and making new plans. We are both pretty stubborn oldest children.
The great and not so great thing about being a therapist, during your own personal brokenness, is that you continue to have to push your stuff aside for the hour you are with your client. Some days are easier than others. Some days this feels like a great relief! They don't know my situation and I don't have to answer any questions. The hour is about them. I can just forget about my situation for a little while. No lie, I'm not on top of my game every moment like I would like to be and there are some times I struggle or think, with my humanness, "Seriously? You could have real issues like cancer." If you work in the field, you've been there. It doesn't mean I don't love my work, know that a problem is a problem, or not like my clients. It just is what it is. And I'm lucky to have great clinician friends I can debrief with so I keep it in check.
Other times there are inspired conversations that come from such a raw real place for me because, at times, my guard comes down more than usual. I'm a head type/analytical most days, but I'm coming from my heart lately. On the drive home or to Wil, sometimes the message of the session was the one I needed so much myself.
A great psychotherapist, Yalom, speaks of how we are all fellow travelers in this life. If we can harness that idea and combine it with compassion, we can truly see that all of us are not so unique, just at different points down the road. It allows us to tap into our authentic self, which is the best space to be in while helping others...because you are using yourself and the relationship to support them in an honest way. Everyone reading this is a fellow traveler. It's relationships that see us through the journey.
One of my last sessions of 2013 was a conversation about brokenness. If I break a beautiful vase, I can glue it back together. But it will never look the same. That piece of glass is changed. I can want it to be different. I can use as much glue as I want. It's cracked. Like 2013.
But there's an option B. I can take the pieces and reconstruct them...Give them meaning, any way I want to, and create a beautiful mosaic out of the shards. I can give meaning to pain and struggle and see something else that is not dangerous...but in fact beautiful, in ways I could not have known; we need to be broken open to create something even more beautiful in our lives.
So 2013...we survived! I found things in me I didn't know existed, found laughter in the middle of the storm, cried a lot, began a journey of healing (not just in the physical sense)...our mosaic is far from finished. Some days I break a little more, but we are trying to invest in the idea that with more and more interesting scraps will come a more vivid and wonderful work of art. This is only the beginning.
Update on Wil: Food is still a challenge but he's had 2 days where he ate a little more. He has started some therapy. It's been a slow process and taken a lot out of me to fight, fight, fight for the care he deserves. I've been very exhausted this week but took out time to see a movie with family and just sit on the couch and watch Sons of Anarchy, shutting my phone off for just a few hours. There's the twinge of "what if he needs me." He needs me 24/7. It's just not physically/emotionally/mentally possible. I'm working on kindness to myself.
He is still trying to get himself out of bed at night. Last night he ended up on the floor. He rolls his eyes at me and doesn't want to talk about the situation. It's frustrating for me because he's being stubborn. He wants to be back to normal and all this is taking so long. He keeps giving up BUT he tries again later. All I can do is shake me head and say "you're killing me smalls." There may be a sticker chart in his near future because he's taken to exaggerating about his effort (and then I get the real story from the therapists). He asked for it when he married a social worker that works with a lot of kids, right?
The clinic was calling Wil to set up his f/u so without knowing it we missed his appointment today (it was originally scheduled for tomorrow but they called him to change it....few more calls today and I think we have changed things so that I am primary contact). Now we are on the books for Monday afternoon. He will have a round of labs and see the doctor at that time.
Again, happiest of years to each of you.
http://www.youtube.com/watch?v=rAD-4XKBcmA
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