Jenny here.
The last few days have been long but quick. I've been pretty tired and just come home and crash. It's a strange feeling to think that less then 2 months ago he was diagnosed. What a fast, rocky, wild ride it has been. Only about 1000 + more days to go until he will be done with cancer! I've had very few jobs for that long!
Having been in and out of daycares for my work I have always said, no matter what the place, daycare is an institution and you use it out of necessity. No one will replace the care you can give as a family. SNF’s are the same way…and my sweet man is only there out of necessity. It’s a mediocre place at best, but was the only one that would accept him ( he's big and tall and now has "aggressive" added to his file) and fit some other requirements like transportation to his medical appointments. Sigh. What a hard decision. I still tear up every time I leave.
There are so many reasons that I will be happy when he is through with rehab. We've experienced some real lapses in care over the weekend that are not life and death but are definitely quality issues. His therapists seem good but the nursing staff is questionable. His speech is just hard to understand and he asks for what he needs but communication is hard and staff doesn't try too hard to help. I wish he could write, but his hands still have tremors from the steroids.
Yesterday I marched in and let the Exec Director and Nurse Manager have it. I was just so fed up. They had no idea they were dealing with a social worker…the SNF will never be home but me, along with all visitors, will make sure he is not forgotten. I told them there would be eyes everywhere! Consequently, when I returned last night, things had gotten done and every staff person seemed to know my name. Sometimes you've just got to cause a scene (even if your hubby kicks you out because he needs calm energy and you are just too revved up lol). Don't mess with a woman on the edge. It won't end pretty.
If anyone is local and wants to just randomly stop in to make sure he has advocates on the ground there, give me a buzz. It takes a village.
It's been nice that the kids are still on vacation. Each time I see my niece, Jay, with him I am swept away in emotion. I was 6, almost 7, when my dad was first in the hospital (almost exactly the same age). When my life changed forever. She was very interested in the PT session and counted right along. She challenged him to eat 10 bites of the homemade soup I brought (5 more than he would have eaten on his own). It made me remember how much I had wanted to know at that age. But back then I had to eaves drop and guess because adults wanted to protect me. Jay isn't worried because she can ask questions if she wants and gets to see him when she wants. Ever the therapist, I have workbooks and other supplies to help us all process. But I think one day Jay and I could write a better book for kids about cancer.
There is one topic I've been avoiding lately. I have to say, in all honesty about this journey, that there are people we thought would be there for us that are MIA. There are folks who cause more stress by questioning decisions or not dealing with their own feelings in a better way. I know it's hard to see him like this. Trust me, I'm there every day. My entire world is upside down with no escape. Wil and I talked early on about how we knew the people that would partner with us for the long haul would rise and we would be cared for when we needed it. Those who couldn't, for whatever reason, we would try to understand their perspective and send them love from the distance they keep. So I don't make these statements as a way to out anyone, just as an honest account of what happens in relationships along the way through illness and to encourage others who might be in the same boat.
You are never alone. The company you keep during tragedy just may be unlikely partners. And that's ok. The people, the "Jays", you need will rise up and meet you every time. Stay open to unexpected love.
We are blessed to have an army of "Jays" these days. I feel swept away when I see friends and other family kiss his head, give him foot rubs, tell him they love him. Tell him to fight. Rearrange schedules to visit. Send cards and love. I think, how did I get so lucky to marry someone so wonderful that everyone else loves him as much as I do? After seeing my mom care for my dad all those years I never wanted to get married and take that risk. I didn't want to ever be that vulnerable. But when Wil has his plan, there is no stopping him. And I easily and quickly fell for the man who I would always refer to as my better half. He's stubborn and loyal and practical. That's why I know he will get this done.
At one point during visitors this week, Wil turned to me and said “I am...so... overwhelmed.” It was very clear. I asked if we needed to leave or quiet down or what was overwhelming. He said “No, I am overwhelmed…with…love.”
Wil doesn’t read the blog. He isn’t yet reading his FB or texts. He doesn’t have the hard evidence, in writing, in phone call conversations, etc that I get every day from all of you. But I am telling you, he feels it all around him. When people visit, even just to watch him sleep, he feels it. He's never felt it more.
He is still very weak. His endurance is not long. His original PT orders are for 4 weeks of daily PT. I am SO hoping that we can shorten that and get him home. Food is our mission these days. I'd love to see a day where he can get in at least 1000 calories. Lately it's been under 600. This morning he says people would be proud because he worked hard to eat some oatmeal and eggs. Every bite is one bite closer to bringing him home. And it's in large part to our army. To you.
Into battle...
Tuesday, December 31, 2013
Saturday, December 28, 2013
Surrounded
surround (v.) sur·round [ sə równd ]
1. enclose something: to occupy the space all around something
2. close off means of escape: to encircle something completely, especially an enemy's military position
3. be around somebody: to associate closely with somebody
Surround. It’s the only word I can think of today when I try to describe how the last 48 hours have felt to me. At times through this experience, the surrounding is a swirl of anxiety and fear, taking my breath away. There have been moments in the past few months where all I can do is tell myself “it’s ok, breathe, it’s ok.” B.C., before the cancer diagnosis, we had not told most people that for months we were back and forth to doctors, running tests, getting biopsies. We had decided to try and keep things quiet until we knew more. In real life, we are open with those close to us, but overall pretty private folks. We prefer to be the helpers, and prefer to do things ourselves. The best thing about being married to Wil is that we are great team mates in whatever comes our way and that means we often just rely on each other. It’s always worked out well, B.C.
Surround has a different feel today. Fear and anxiety are part of our lives (it’s cancer, there is no way we won’t feel those!) but the surround…it’s starting to shift. It’s as though I can literally feel the thoughts, well wishes, and prayers surround us more each day. I think I can speak for Wil when I say we feel surrounded now more often by overwhelming love. We had no expectation about documenting this journey other than to keep family and friends posted in a time efficient way. What we have already received back in overwhelming support continues to amaze me. Illness brings out character…and we are blessed by some great people, near and far, old and new.
Wil’s speech is improving. I still have to ask him to repeat things so I get it right. When he concentrates its easier to understand him. He has so many thoughts running through him yet can’t get them out like he would like. He was somber this morning when my sister, her kids, and I arrived. But he looked good and had slept OK (his big complaint was that the food is no good and he needed a chocolate shake…something my dad would have requested when he was in the nursing home too). He motioned for the kids to come hug him (which on Christmas he did not, being too depressed, so the kids had to love on him at their request). Today he kept motioning for more hugs. That my friends, is real progress, but also made me know what he needs more…the kids in his life.
To know the special relationship he has with the eldest niece on my side of the family, can only be understood by knowing that a few weeks after her birth, we all moved in together. Wil is a proud uncle to ALL his nieces and nephews, but we were able to help out and see all those first year milestones up close and personal. When no one else could soothe her, it was Unkie to the rescue with his big arms and tight squeezes, just what our little sensory girl needed to sleep. We had her many weekends even after they moved out and Wil even helped with potty training some days (I still laugh about the phone call I got when my sister dropped her off in real undies for the first time. Wil was frantic “What do I do? She isn’t wearing a diaper!” But he took a few instructions and they were a great team). They have a special bond.
Today, she marched right in to the nursing home, not phased by any sights or sounds, on a mission to room 405. She gave him a speech about getting better and that she will trade hugs for him trying to eat. She said she needs him home (I’ve asked her many times, “how are you so smart at age 6?” She reminded me she is almost 7). Then she announced to us that we would “fill the room with love” by drawing pictures and writing on posters “You are handsome and strong” She kept giving hugs. He was surrounded. And in the pictures we took, the only one where he seemed to really smile, she had her arm around him. Surrounded.
Wil looked at me and said “I’ve made up my mind.” It was spoken clearly; I didn’t have to ask twice. But I did ask about what. He said slowly, “I’m going to do this.”
Life “on the outside” the past 48 hours I have also felt surrounded. I am a therapist, a social worker, a helper…who honestly was quite happy doing it all with my partner in crime and not needing people as much as I am humbled to realize we do now. I wish I could respond in bigger messages, in more thank you’s, then I am able.
It was a good day today. The SNF isn’t perfect. None of them will be. The blessing here is that he should be cared for but shouldn’t be comfortable. We need him home, need him motivated to get home. I, with my love of the kitchen and everything cooking, will remedy the food issue. You all are my allies on keeping spirits high. Wil will do his best to get stronger between now and his next UTSW oncology visit on January 3, 2014.
We’ve got this.
Transitions
Jenny here.
Yesterday I thought I had hit a low with Wil being so depressed and refusing to try. I really appreciate the texts, posts, emails,and messages from you all. I haven’t had time to respond to them all…but I’ve read every one and held on to them. Truly, thank you. I felt really exposed writing it, maybe a little self-absorbed, but I feel good came from it.
Have you ever written yourself a letter to open in the future? I remember doing that at summer camp and it was always fun to see what you wrote. Last night I went home after blogging, praying and trying to figure out how to make my way back to the hospital. I was tired, sad, still upset...but more than anything I just felt powerless.
I found some boxes of pictures in the office and started looking through them for something that I could show him. A symbol, a memory…something that would make him remember the man and husband I know still exists. I found a few, but then I stumbled upon a letter I scribbled on FYE Illinois WesleyanUniversity note pad sheets to him in 2003 (for my IWU peeps who remember those!), and it reminded me of the person and wife I am too. I won’t bore you with the whole thing, but I remember that day…May 12, 2003, sitting on the floor of our empty apartment in Urbana, IL. We had just spent the first 3 years of our marriage at IWU and were moving out into our first hand-picked apartment so I could finish my MSW. I was waiting for our new couch to arrive. Broke as hell…again.
“I’m sitting here thinking about our vows, ‘For richer or poorer, in sickness and in health.’ I’m trying to remember the feeling that day and it rushes back like a wave of deep blue ocean--certainly not always calm, maybe a little chaotic, overwhelming, hostile at times—but moving to a destined rhythm and controlled by a power far above. I’m trying to remember that our future is the same--rolling along, caressing unknown shores, scary, but meant to be. We laughed during our ceremony back then because we were living in uncertainty but somehow we always stay afloat. Every day is a step of faith as my heart expands being together. There is no one else I would rather be poor or sick with because you can’t buy happiness, and you, my puppy, make me very happy.”
I grabbed the letter that I had not read since the day I wrote it (yet it said the words I needed righ then in 2013), and a framed 5x7. I scribbled in Sharpie “fight for us” on the glass of the picture frame and took off back to the hospital.
It was a rough night. He was very delirious again and had trouble sleeping more than 2 hours at a time. When he woke up, I put the framed picture on his table--a funny selfie of the two of us that we took after the funeral of our dear friend who fought cancer but lost (the reason for our matching tattoos).
I told him today is a new day and I won’t sit by and helpfacilitate his death. No more Mrs. Nice Wife. He said he understood. He got up, did OT while listening to Mary J. Blige's No More Drama, sat in his recliner for 2 hours,ate twice as much as usual. It was a good morning.
Today Wil was discharged from UTSW and transferred to a SNF. I had no clue how emotional it would be for me. While his previous placement separated out rehab folks from the general nursing home population, this new place is mixed. I’mstruck by how young we are…I’m reminded by how young we are every time a staff person has a puzzled look and says we are young! Even the ambulance service woman said “I can’t imagine” and her eyes filled with tears and wished us luck. Some days I wish we blended in more. It’s touching, but I’m trying to keep my head up here too. I don’t see where our life is more remarkable then anyone else’s. We are all just one life experience away from a whole new life at any moment. 2013 was just our year, our experience.
Wil got assigned his own room because he’s positive for MRSA,but this also means he won’t be able to leave his room much. He drifted in and out of sleep for a few hours while I settled him in and completed the admission paperwork. I sat on the edge of his bed rubbing his leg, he had been SO anxious all day waiting to transition. How does man who still weighs 350lbs and measures near 6’4” look so small these days?
Eventually I left for work, sobbing as I drive off. I felt more devastated then the day we found out he had cancer. I don’t want to leave him there but I know he needs help and supervision and pray this is motivation to get going on rehab and get his butt home. Per his report later this evening ,he is already “causing drama” because he decided to get up and try to use the bathroom. Thank goodness he did not fall, but he did make a mess and called for cleanup. He tells me he is in trouble. I smile from the inside out. He’s airing his transgressions and apologizing. I’m just thrilled he is showing some fight J
Thursday, December 26, 2013
Answering the Call
I ask him the same question. How serious do you take your vows? There are only two options. Fight or quit.
He cries. He says "it's too hard."
I turn away to eat my own dinner which is no longer appetizing.
He sits himself up and starts to eat his soup. He says he will try. I pray.
Love is a feeling. Commitment is an action. I tell him altar calls are about recommitting and that's all I need from him. A commitment to fight for our love. For our relationship. For our life. I can't do this without him. I won't let him quit.
Keep him in your thoughts. He's really struggling emotionally and mentally with all of this. And me too.
He cries. He says "it's too hard."
I turn away to eat my own dinner which is no longer appetizing.
He sits himself up and starts to eat his soup. He says he will try. I pray.
Love is a feeling. Commitment is an action. I tell him altar calls are about recommitting and that's all I need from him. A commitment to fight for our love. For our relationship. For our life. I can't do this without him. I won't let him quit.
Keep him in your thoughts. He's really struggling emotionally and mentally with all of this. And me too.
Altar Call
Jenny here. Somewhat unwillingly today. I want Wil to write. I offered to type for him. I hope he will change his mind soon.
Today is a tough one. It started out with plans to transfer to the SNF. Everything was set. But his potassium and sodium levels were low. He had some IV fluids to try and correct it. But it was enough that they decided not to discharge him, maybe tomorrow. During rounds his oncologist said he is looking good (medically). The sleep meds didn't work last night and he was agitated and getting up out of bed, leaving me crazy messages at 4 a.m. with things I know he doesn't mean. They are adjusting them again to see if we can try to correct the sleep cycle.
But his team said he is doing good! His oncologist said it's taking some time but we are headed in the right direction.
I feel relief. I hear "we are on our way!"
What Wil feels is depression. What Wil hears these days is something completely different. He hears "I'm still sick." His doctor senses this, kneels by his bed and holds his hand (because he won't sit up when they are here...just weeks ago he would sit on the edge of his bed to talk, insist on sitting in the recliner all day). She looks at him and says "you can't give up now. We are not giving up. You have to fight. " He replies "yea yea yea" and closes his eyes. He begs for the Foley catheter to be put back in because he doesn't want to get out of bed. He doesn't want to have an accident on himself. But there is no medical reason for it and at this point it was causing infection.
During PT and speech he won't complete the exercises. He just says "I'm done" or "I'm tired".
The afternoon was spent with him napping. Even in his sleep he says "I'm done. I can't do this. It's too hard."
Dinner comes. He refuses and says take it away. I have them leave it. He tells me he wants to die. My heart sinks. My anger apparent.
Who is the crazy woman in room 321 losing it at the man with leukemia? That would be me. But I lead with my heart on my sleeve. Only blinded by the tears I can't contain. I share so much, but he rarely sees me cry.
I melt down. And perform my own altar call on the spot. Everyone loves him. Everyone is pulling for him and his recovery. Everyone but him. If he showed half the commitment to fighting as he does to resisting we could really get somewhere. But Wil is a proud man. He rarely fails because he rarely tries anything new unless he knows for a fact he will succeed. He likes consistency. He likes life to be predictable. It's safer to stay in bed then to face the possibility of failing. Or worse yet, his own mortality.
I don't even attempt to know what he feels like to be him. To be in captivity. But I know he will never come home unless he can turn this around soon. Every day he is losing his ground in terms of mobility.
I tell him my heart. He promised me his life. His sickness and his health. I've got his back. I'm here all extra minutes of the days at my own health sacrifice. I tell him I'm never leaving him. He's stuck with me. But I tell him I'm done feeling bad for him. I'm done fluffing pillows he can move himself. I'm done begging for him to eat when the speech therapist has said it's not a swallow issue it's a needing to try and be patient issue. I tell him something I never thought I would say to the man I love, especially while he's sick--I tell him he's breaking my heart.
Cancer sucks. It's not fair. But there is nothing I can do until he's ready to fight this thing. He mumbles "don't cry." He says his 100th "I'm sorry" of the day, usually followed by what he won't do, what he refuses to do.
Ironically family feud is on in the background with the question of "on a scale from 1-10, how seriously do people take their wedding vows?" You just can't make this stuff up.
Today is a tough one. It started out with plans to transfer to the SNF. Everything was set. But his potassium and sodium levels were low. He had some IV fluids to try and correct it. But it was enough that they decided not to discharge him, maybe tomorrow. During rounds his oncologist said he is looking good (medically). The sleep meds didn't work last night and he was agitated and getting up out of bed, leaving me crazy messages at 4 a.m. with things I know he doesn't mean. They are adjusting them again to see if we can try to correct the sleep cycle.
But his team said he is doing good! His oncologist said it's taking some time but we are headed in the right direction.
I feel relief. I hear "we are on our way!"
What Wil feels is depression. What Wil hears these days is something completely different. He hears "I'm still sick." His doctor senses this, kneels by his bed and holds his hand (because he won't sit up when they are here...just weeks ago he would sit on the edge of his bed to talk, insist on sitting in the recliner all day). She looks at him and says "you can't give up now. We are not giving up. You have to fight. " He replies "yea yea yea" and closes his eyes. He begs for the Foley catheter to be put back in because he doesn't want to get out of bed. He doesn't want to have an accident on himself. But there is no medical reason for it and at this point it was causing infection.
During PT and speech he won't complete the exercises. He just says "I'm done" or "I'm tired".
The afternoon was spent with him napping. Even in his sleep he says "I'm done. I can't do this. It's too hard."
Dinner comes. He refuses and says take it away. I have them leave it. He tells me he wants to die. My heart sinks. My anger apparent.
Who is the crazy woman in room 321 losing it at the man with leukemia? That would be me. But I lead with my heart on my sleeve. Only blinded by the tears I can't contain. I share so much, but he rarely sees me cry.
I melt down. And perform my own altar call on the spot. Everyone loves him. Everyone is pulling for him and his recovery. Everyone but him. If he showed half the commitment to fighting as he does to resisting we could really get somewhere. But Wil is a proud man. He rarely fails because he rarely tries anything new unless he knows for a fact he will succeed. He likes consistency. He likes life to be predictable. It's safer to stay in bed then to face the possibility of failing. Or worse yet, his own mortality.
I don't even attempt to know what he feels like to be him. To be in captivity. But I know he will never come home unless he can turn this around soon. Every day he is losing his ground in terms of mobility.
I tell him my heart. He promised me his life. His sickness and his health. I've got his back. I'm here all extra minutes of the days at my own health sacrifice. I tell him I'm never leaving him. He's stuck with me. But I tell him I'm done feeling bad for him. I'm done fluffing pillows he can move himself. I'm done begging for him to eat when the speech therapist has said it's not a swallow issue it's a needing to try and be patient issue. I tell him something I never thought I would say to the man I love, especially while he's sick--I tell him he's breaking my heart.
Cancer sucks. It's not fair. But there is nothing I can do until he's ready to fight this thing. He mumbles "don't cry." He says his 100th "I'm sorry" of the day, usually followed by what he won't do, what he refuses to do.
Ironically family feud is on in the background with the question of "on a scale from 1-10, how seriously do people take their wedding vows?" You just can't make this stuff up.
Wednesday, December 25, 2013
The Joy Ride
Jenny here. Merry Christmas!
"There is some kind of sweet innocence in being human -- in not having to be just happy or just sad -- in the nature of being able to be both broken and whole, at the same time." -C. JoyBell C.
Illness is lonely no matter how many people love you. I know that sounds bleak for Christmas Day, but bear with me. It's just a fact that no one can be here with me all the hours I spend with him. I have to face and deal with much of this on my own. Everyone has their own lives and families to attend to and obligations to keep. Part of my journey is learning to ask for and recieve help. Part of it is accepting that some of life will always be walked alone, in shadows. For Wil, enduring the challenges, pain, and physical set backs are his own personal prison that he has to face. I'm right here, but I can't know how it feels to be in his place either.
I love quotes and this year I keep coming back to the one above. These two states are not separate or at odds but, instead, great collaborators in my life. The ability to cherish small pockets of joy during crazy life events....I can't say I'm great at it every day, but when it happens I feel peace no matter what. I'm pretty sure this is how life is most wonderfully lived; experiences of growth happen in a place between brokenness and wholeness, smack dab in the middle of it.
But today....in between Wil's begging to let him quit and his ecstasy of wheelchair joy rides...in between my tears of exasperation and hugs from my family...This Christmas I'm not really sure how to express how the last 40+ days has felt. But I'm thankful for the brokenness because of the small acts of kindness we have witnessed (whether it be hugs, visits, gifts, doggie care, cash, texts, messages, cards, decorations)...the unexpected, the real Christmas miracles. Love to you all.
Update: Wil is still at UTSW another night. He's developed an infection with several strains of crud. The Foley comes out and he's on preventative meds so he won't get a UTI as well. Most likely he will transfer tomorrow to another SNF a little closer to home. The goal is to gain endurance and then get re evaled for the UTSW rehab floor. He's been struggling with reality at night because of sleep issues, so a little dose of Haldol is in the works for tonight to try and get his normal sleep pattern back. He is still pretty frustrated because communicating is hard and he is stir crazy.
"There is some kind of sweet innocence in being human -- in not having to be just happy or just sad -- in the nature of being able to be both broken and whole, at the same time." -C. JoyBell C.
Illness is lonely no matter how many people love you. I know that sounds bleak for Christmas Day, but bear with me. It's just a fact that no one can be here with me all the hours I spend with him. I have to face and deal with much of this on my own. Everyone has their own lives and families to attend to and obligations to keep. Part of my journey is learning to ask for and recieve help. Part of it is accepting that some of life will always be walked alone, in shadows. For Wil, enduring the challenges, pain, and physical set backs are his own personal prison that he has to face. I'm right here, but I can't know how it feels to be in his place either.
I love quotes and this year I keep coming back to the one above. These two states are not separate or at odds but, instead, great collaborators in my life. The ability to cherish small pockets of joy during crazy life events....I can't say I'm great at it every day, but when it happens I feel peace no matter what. I'm pretty sure this is how life is most wonderfully lived; experiences of growth happen in a place between brokenness and wholeness, smack dab in the middle of it.
But today....in between Wil's begging to let him quit and his ecstasy of wheelchair joy rides...in between my tears of exasperation and hugs from my family...This Christmas I'm not really sure how to express how the last 40+ days has felt. But I'm thankful for the brokenness because of the small acts of kindness we have witnessed (whether it be hugs, visits, gifts, doggie care, cash, texts, messages, cards, decorations)...the unexpected, the real Christmas miracles. Love to you all.
Update: Wil is still at UTSW another night. He's developed an infection with several strains of crud. The Foley comes out and he's on preventative meds so he won't get a UTI as well. Most likely he will transfer tomorrow to another SNF a little closer to home. The goal is to gain endurance and then get re evaled for the UTSW rehab floor. He's been struggling with reality at night because of sleep issues, so a little dose of Haldol is in the works for tonight to try and get his normal sleep pattern back. He is still pretty frustrated because communicating is hard and he is stir crazy.
Tuesday, December 24, 2013
Beauty Is
Disclaimer: I don't post pics that Wil hasn't approved. And I don't post them for shock value. I post them (we post them) because Wil wanted this to be our live journal of what this journey is and isn't. We also wanted to let others who love him, and can't be here see his sweet face, a chance to feel a little closer.
I've had people tell me cancer is beautiful. Well meaning I'm sure. I get it. Our life is forever changed. Our priorities are suddenly clear. But as I sit and watch my best friend in pain each day, beautiful is not the word that comes to mind. Cancer, I'm afraid, I can't agree is beautiful. It ravages and strips away your energy and dignity as you come to depend more and more on others as your body shuts down functions to fight the fight.
My husband is beautiful, our life is beautiful, our love is beautiful, the kindness of others is beautiful. Wil's spirit through this is beautiful. Things cancer can't take away.
Some pics are from last week (doing OT, getting a haircut from a tech), the black and white from the ER this weekend, and a few close ups from today. I can't wait until we look back at these and say, "wow, it's hard to believe it was ever like that."
I've had people tell me cancer is beautiful. Well meaning I'm sure. I get it. Our life is forever changed. Our priorities are suddenly clear. But as I sit and watch my best friend in pain each day, beautiful is not the word that comes to mind. Cancer, I'm afraid, I can't agree is beautiful. It ravages and strips away your energy and dignity as you come to depend more and more on others as your body shuts down functions to fight the fight.
My husband is beautiful, our life is beautiful, our love is beautiful, the kindness of others is beautiful. Wil's spirit through this is beautiful. Things cancer can't take away.
Some pics are from last week (doing OT, getting a haircut from a tech), the black and white from the ER this weekend, and a few close ups from today. I can't wait until we look back at these and say, "wow, it's hard to believe it was ever like that."
Day 43 in Captivity
Jenny here.
Can it really be Christmas Eve already? I see the indications all around. Santa hats, people talking about leaving work early. Lights. Glimmer.
I'm here at UTSW in jeans and my green John Deere T-shirt that says "That's how I roll." I think this is as Christmas-y as I get. It's been a busy day. He had his rehab floor assessment this afternoon. It doesn't sound like a go. He may just be too weak. So although we are waiting for official word on that front (I'm not uncrossing my fingers and toes until I hear them say the words), I'm speaking with other facilities as plan B. Picking sight unseen, I'm afraid, because I work tonight and tomorrow night. Oh how I'd love to call in but I'm not even sure I have much PTO left. He's ready, medically, to be discharged. I am trying to call in the troops and have someone here for the time I'm gone. I just can't let him transition again alone. So Christmas most certainly will probably be a moving and settling day.
It's so sweet that many staff tell him he is a favorite. I'm especially touched by the men who are nurses and therapists. They seem to take special time and care with him with man to man chit chat.
Last night he was crazy. Crazy funny until he reached absolute frustration and melt down. He went from saying things like "I lost my filter!" while cussing cancer up and down and doing Animal from the Muppets (his voice sounds like it now since all his muscle control went crazy) to almost tears saying "I just can't do this." I left around midnight knowing it would be a tough night but desperate for my own sleep. When I returned this morning he had been moved to a naughty room (across from nursing station again) because he had gotten out of bed and ended up on the floor. The staff said he barely slept. It's almost as if he gets in a somewhat dream state. He knows where he is but his dreams mix and mingle with reality. Like when I swore I had lost my ring because my dream was so real the other night and I had to see it before I could believe that I still had it. If that makes sense. He knows he feels crazy because his thoughts don't seem right yet his mind still wanders where it wants.
Keep him in your thoughts. I'm off to work...
Can it really be Christmas Eve already? I see the indications all around. Santa hats, people talking about leaving work early. Lights. Glimmer.
I'm here at UTSW in jeans and my green John Deere T-shirt that says "That's how I roll." I think this is as Christmas-y as I get. It's been a busy day. He had his rehab floor assessment this afternoon. It doesn't sound like a go. He may just be too weak. So although we are waiting for official word on that front (I'm not uncrossing my fingers and toes until I hear them say the words), I'm speaking with other facilities as plan B. Picking sight unseen, I'm afraid, because I work tonight and tomorrow night. Oh how I'd love to call in but I'm not even sure I have much PTO left. He's ready, medically, to be discharged. I am trying to call in the troops and have someone here for the time I'm gone. I just can't let him transition again alone. So Christmas most certainly will probably be a moving and settling day.
It's so sweet that many staff tell him he is a favorite. I'm especially touched by the men who are nurses and therapists. They seem to take special time and care with him with man to man chit chat.
Last night he was crazy. Crazy funny until he reached absolute frustration and melt down. He went from saying things like "I lost my filter!" while cussing cancer up and down and doing Animal from the Muppets (his voice sounds like it now since all his muscle control went crazy) to almost tears saying "I just can't do this." I left around midnight knowing it would be a tough night but desperate for my own sleep. When I returned this morning he had been moved to a naughty room (across from nursing station again) because he had gotten out of bed and ended up on the floor. The staff said he barely slept. It's almost as if he gets in a somewhat dream state. He knows where he is but his dreams mix and mingle with reality. Like when I swore I had lost my ring because my dream was so real the other night and I had to see it before I could believe that I still had it. If that makes sense. He knows he feels crazy because his thoughts don't seem right yet his mind still wanders where it wants.
Keep him in your thoughts. I'm off to work...
Monday, December 23, 2013
All I Want for Christmas
Jenny here.
Today I was so happy to have a social worker. We met with the BMT social worker so she could hear our side of the SNF snafoo. I was almost brought to tears. As I started to air my issues ( that facility did not try to involve me and gave no second chance (among a few others), Wil woke up and asked help in sitting up. Sitting up is no small feat these days. He pulled and pushed and sat on the edge of the bed. He said "I want to be heard. It's just not right." And so he told his story. I just could not have been more proud of him. In the last 24 hours we are seeing better spirits. I think he's finally found that positive fight again.
The team, and especially his oncologist, were livid about what happened with the SNF that was sort of like a MVP placement facility for patients. I was told they are making some calls and the facility is now scrambling to extend us an olive branch of re assessing Wil again. Um, no thanks. I was told they had called UT 10 min after he left saying he couldn't come back. Wil admits his wrong. But these are the types of patients facilities should be trained to take care of. He hasn't ever had a problem with any staff at UTSW. In fact, not even needed a sedative since he got back. I will just never forget looking into ER room #4 on Saturday, after driving like hell from the SNF to UT, seeing him sitting on the edge of a gurney, draped in part of his gown, looking at the floor with tears in his eyes. He had no way to contact me because the SNF had kept his phone. He was all alone for several hours because the SNF had never called me. I'm glad he had a social worker today too to tell his story to...I think he felt better saying it out loud too.
New plan: Here's where we need some prayers, vibes, chants, and wishes said aloud--the UT rehab floor is coming back to re eval him TODAY. Funny, he was too strong last time to qualify. Now he may not be strong enough because it's 3 hours of PT every day. It's a 14 day program. He has to be well enough to tolerate it. BUT it would be such a great fit. And his BMT team could set eyes on him daily as well. His whole team and me would love that to happen. Cross your fingers!
If that doesn't work we are looking at 3 news rehab facilities. He will be at UT overnight at least. We should know more by end of day.
His vitals are awesome.
On FB I had saw several people post wishes for Christmas. I kept thinking, no more cancer or for Wil to smile or to win the lottery or to have him home. But I realize that I keep getting everything I really want and need each day, somehow, so we're blessed.*
I try to not put too many embarrassing things on here. But cancer is too serious not to enjoy the silly when it happens. So...he may delete this later but for the time being, here goes: He started saying tons of "love yous" and slept ok without me last night. What a gift. This morning he whispered in my ear "shart". Followed by my questioning look and him, with a more serious look, saying "shit. fart" and a pointing finger toward the nurse button for cleanup on aisle 3. My man, a normally very quiet, easily embarrassed guy....loss of independence is hard, but he still makes me laugh. I'm glad he's in better spirits.
*But if Santa wanted to throw in something extra I'd take Wil being able to stay "home" at UTSW for the holidays and his rehab.
Today I was so happy to have a social worker. We met with the BMT social worker so she could hear our side of the SNF snafoo. I was almost brought to tears. As I started to air my issues ( that facility did not try to involve me and gave no second chance (among a few others), Wil woke up and asked help in sitting up. Sitting up is no small feat these days. He pulled and pushed and sat on the edge of the bed. He said "I want to be heard. It's just not right." And so he told his story. I just could not have been more proud of him. In the last 24 hours we are seeing better spirits. I think he's finally found that positive fight again.
The team, and especially his oncologist, were livid about what happened with the SNF that was sort of like a MVP placement facility for patients. I was told they are making some calls and the facility is now scrambling to extend us an olive branch of re assessing Wil again. Um, no thanks. I was told they had called UT 10 min after he left saying he couldn't come back. Wil admits his wrong. But these are the types of patients facilities should be trained to take care of. He hasn't ever had a problem with any staff at UTSW. In fact, not even needed a sedative since he got back. I will just never forget looking into ER room #4 on Saturday, after driving like hell from the SNF to UT, seeing him sitting on the edge of a gurney, draped in part of his gown, looking at the floor with tears in his eyes. He had no way to contact me because the SNF had kept his phone. He was all alone for several hours because the SNF had never called me. I'm glad he had a social worker today too to tell his story to...I think he felt better saying it out loud too.
New plan: Here's where we need some prayers, vibes, chants, and wishes said aloud--the UT rehab floor is coming back to re eval him TODAY. Funny, he was too strong last time to qualify. Now he may not be strong enough because it's 3 hours of PT every day. It's a 14 day program. He has to be well enough to tolerate it. BUT it would be such a great fit. And his BMT team could set eyes on him daily as well. His whole team and me would love that to happen. Cross your fingers!
If that doesn't work we are looking at 3 news rehab facilities. He will be at UT overnight at least. We should know more by end of day.
His vitals are awesome.
On FB I had saw several people post wishes for Christmas. I kept thinking, no more cancer or for Wil to smile or to win the lottery or to have him home. But I realize that I keep getting everything I really want and need each day, somehow, so we're blessed.*
I try to not put too many embarrassing things on here. But cancer is too serious not to enjoy the silly when it happens. So...he may delete this later but for the time being, here goes: He started saying tons of "love yous" and slept ok without me last night. What a gift. This morning he whispered in my ear "shart". Followed by my questioning look and him, with a more serious look, saying "shit. fart" and a pointing finger toward the nurse button for cleanup on aisle 3. My man, a normally very quiet, easily embarrassed guy....loss of independence is hard, but he still makes me laugh. I'm glad he's in better spirits.
*But if Santa wanted to throw in something extra I'd take Wil being able to stay "home" at UTSW for the holidays and his rehab.
Sunday, December 22, 2013
Keeping watch
Jenny here. Last night was a rather sleepless night as I sat looking over Wil as he tried to sleep, helping him calm down when needed. I know I can't do this every night and I KNOW I won't need to because this is a temporary situation for us.
First the good: Medically Wil is doing ok. Vitals are great, blood counts good, bilirubin is still high (jaundice) but continuing to slowly get better. He's oriented. He's watching a few episodes of Family Guy here and there and I saw a partial smile for a second.
Continuing concerns: Sure the guy can pass the questions about who he is and where he is, but he's still very agitated. He still randomly gets upset about why the nurse won't tell him if his plane (bed) has been used for combat already (or other interesting things like what happened to the dead bodies). These are pressing questions during Wil's witching hour (the wee hours of the morning when he presses that nurse call button repeatedly and tells them how to do their jobs lol).
Today, he's allowed me to laugh a little without getting annoyed. It's the small things.
Nutrition wise I'm still concerned about motor skills in that mouth. They were going to order a swallow study but when I got sick and he got discharged it fell on the SNF to follow through. And he was not there long enough. He just doesn't eat. So a swallow study is back on here at UTSW. When I say he maybe eats 3 bites of food...it's still true. He's now down 80lbs since Halloween. While weight loss is good for him, not like this. And not to where it's weakening you more. His PT time made him dizzy. I think it's more of a lack of food thing today.
The SNF was not interested in trying any harder to work with him. My baby, rehab drop out. They kept saying its a safety issue and "he's a big guy". Even agitated, I can't imagine being afraid of Wil. Maybe it's the home visitor to the mentally ill in me, but I think I've seen scarier. I think he's just not the typical and all of sudden there is no room at the inn. With all that said, his oncology team will be making new plans for him based on some assessments today. Many thanks to his sister who has hauled his possessions back and forth across town this past week!
Today, he's allowed me to laugh a little without getting annoyed. It's the small things.
Nutrition wise I'm still concerned about motor skills in that mouth. They were going to order a swallow study but when I got sick and he got discharged it fell on the SNF to follow through. And he was not there long enough. He just doesn't eat. So a swallow study is back on here at UTSW. When I say he maybe eats 3 bites of food...it's still true. He's now down 80lbs since Halloween. While weight loss is good for him, not like this. And not to where it's weakening you more. His PT time made him dizzy. I think it's more of a lack of food thing today.
The SNF was not interested in trying any harder to work with him. My baby, rehab drop out. They kept saying its a safety issue and "he's a big guy". Even agitated, I can't imagine being afraid of Wil. Maybe it's the home visitor to the mentally ill in me, but I think I've seen scarier. I think he's just not the typical and all of sudden there is no room at the inn. With all that said, his oncology team will be making new plans for him based on some assessments today. Many thanks to his sister who has hauled his possessions back and forth across town this past week!
I'm starting to feel compelled to run my mouth to anyone who will listen and who comes into contact with my sweet baby (who doesn't always act so sweet right now). They are all nice. We've had amazing doctors, nurses, techs, therapists, cleaning crew, food service...but I feel absolutely compelled to tell bits and pieces of the story of us, of Wil...of life outside this captivity...of life B.C. Before Cancer. Of the real Wil.
I've got plenty. I'd love to hear some of yours if you are willing to share! If your comment doesn't show right away, never fear, I have to click approve :)
Saturday, December 21, 2013
Home Sweet...UTSW
Jenny here.
I woke up, no fever for over a 36 hours, ready to see Wil in his new digs at rehab. I hadn't been able to reach him, but sometimes he is so in and out I don't think anything of it. I make the hour drive, get there, it's lunch time. He's not in his room so I start sorting out a few things. 15 minutes later I decide to see where he is at and surprise him.
Much to my surprise he is not there. And they had tried to call me but had called his cell. So I had no idea. Per staff, he was very agitated this morning, pushed a staff person against the wall, tried to run away (mind you he is still a fall risk so this scares me to death!), and then eventually threw a glass and it shattered. No one was harmed. But he's such a big guy ( even after losing 70lbs since Halloween), that there are no second chances. Off to UTSW ER he went to be evaluated.
They are running tests but a likely cause is that, although he has been catheterized again, he was holding urine and literally needed to be drained (which could result in behavioral changes much like a UTI can cause). He thinks there is a conspiracy at the rehab facility and was less then amused when I asked him questions about this morning and was irritated that my face didn't look like I "believed him." Rehab won't take him back without another eval and meeting of the minds with his oncologist. So for tonight we are back at St Paul on a regular floor. However, as luck would have it, with a tech he had up on BMT.
He looks better. He is more oriented. But his mood and agitation continue to be unpredictable. Mostly he is just angry all the time. I tried to joke with him and he said "I'm ag-i-TATED! What is wrong with people!" Oh Willy, you owe me so many beautiful smiles when this is over. I miss them.
So tonight, not so much unlike the last 4 nights of being sick, I will be sleeping on the couch. This time at home sweet UTSW. We will see what tomorrow brings and what they decide to do with my grizzly bear.
I woke up, no fever for over a 36 hours, ready to see Wil in his new digs at rehab. I hadn't been able to reach him, but sometimes he is so in and out I don't think anything of it. I make the hour drive, get there, it's lunch time. He's not in his room so I start sorting out a few things. 15 minutes later I decide to see where he is at and surprise him.
Much to my surprise he is not there. And they had tried to call me but had called his cell. So I had no idea. Per staff, he was very agitated this morning, pushed a staff person against the wall, tried to run away (mind you he is still a fall risk so this scares me to death!), and then eventually threw a glass and it shattered. No one was harmed. But he's such a big guy ( even after losing 70lbs since Halloween), that there are no second chances. Off to UTSW ER he went to be evaluated.
They are running tests but a likely cause is that, although he has been catheterized again, he was holding urine and literally needed to be drained (which could result in behavioral changes much like a UTI can cause). He thinks there is a conspiracy at the rehab facility and was less then amused when I asked him questions about this morning and was irritated that my face didn't look like I "believed him." Rehab won't take him back without another eval and meeting of the minds with his oncologist. So for tonight we are back at St Paul on a regular floor. However, as luck would have it, with a tech he had up on BMT.
He looks better. He is more oriented. But his mood and agitation continue to be unpredictable. Mostly he is just angry all the time. I tried to joke with him and he said "I'm ag-i-TATED! What is wrong with people!" Oh Willy, you owe me so many beautiful smiles when this is over. I miss them.
So tonight, not so much unlike the last 4 nights of being sick, I will be sleeping on the couch. This time at home sweet UTSW. We will see what tomorrow brings and what they decide to do with my grizzly bear.
Thursday, December 19, 2013
Just a quick update
Jenny here.
After a tough weekend and first part of the week, I came down with the crud that has been going around. Which has meant being home since Tuesday night. Unable to see Wil, who was not quite that sure why I couldn't see him. He would just keep saying he needed me there. Wednesday afternoon I got the call, while I was in the midst of my fever, that they were discharging him and I needed to come collect his things. Thankfully his sister was able to to go and pack up everything and take it with her. Something with room availability didn't work out so Wil was actually just transferred this afternoon to his rehab.
I had dreams of being there every step. I know it caused more stress for him. But there was just no way.
So, from what he has texted and his sister has confirmed, the room is great, the staff is great. It's a wonderful place. The Hilton of rehabs. Tonight he is resting well, still tough to understand his speech on the phone, but he texted answers to my questions that made sense!
Next follow ups with UTSW are next week. He will have transportation provided by the facility. The docs have already said several weeks to several months for the liver to recover. Hoping the cancer counts stay low until then because no chemo until that liver is OK.
If anyone needs contact details, hit me up on FB. I think he also accidentally posted a few pics of his room. I had asked him to send me a couple and then we couldn't figure out where they went :)
One step closer to home. He's enjoying that idea.
After a tough weekend and first part of the week, I came down with the crud that has been going around. Which has meant being home since Tuesday night. Unable to see Wil, who was not quite that sure why I couldn't see him. He would just keep saying he needed me there. Wednesday afternoon I got the call, while I was in the midst of my fever, that they were discharging him and I needed to come collect his things. Thankfully his sister was able to to go and pack up everything and take it with her. Something with room availability didn't work out so Wil was actually just transferred this afternoon to his rehab.
I had dreams of being there every step. I know it caused more stress for him. But there was just no way.
So, from what he has texted and his sister has confirmed, the room is great, the staff is great. It's a wonderful place. The Hilton of rehabs. Tonight he is resting well, still tough to understand his speech on the phone, but he texted answers to my questions that made sense!
Next follow ups with UTSW are next week. He will have transportation provided by the facility. The docs have already said several weeks to several months for the liver to recover. Hoping the cancer counts stay low until then because no chemo until that liver is OK.
If anyone needs contact details, hit me up on FB. I think he also accidentally posted a few pics of his room. I had asked him to send me a couple and then we couldn't figure out where they went :)
One step closer to home. He's enjoying that idea.
Monday, December 16, 2013
Under Pressure
Jenny here.
First the improvements: he ate an egg today! And pushed himself hard in PT (rolling himself down hall in wheelchair).
It was a really hard weekend for our favorite guy. Although the steroids ended last week and liver numbers are not worse, the weakness, slurred speech, disorientation, confusion, and now increasing agitation are wrecking havoc on mood and sleep. He is often begging and pleading and angry about almost everything. He is no longer getting all his mental status questions correct all the time. Today he thought it was 1992. He is still eating very little. He now has a catheter to reduce falls and accidents. And overnight we hit a new level of care: he has to have sitter or loved one in the room at all times because in his agitation he won't wait for help out of bed.
The team feels that the liver, along with paradoxical medicinal effects, is the cause and he needs to come off most meds, including a blood pressure med, so we can try to detoxify his system. If his body holds on to the toxins they have an option 2... A drug that will quickly clean him out in the form of diarrhea. We are crossing fingers it won't come to that one, especially since he is not very mobile.
Mood wise, if you know him, just imagine all opposites. Angry. Impatient. Demanding. Overly verbal. Defiant. When he is sleeping I can still see glimpses of the guy I know is still there. But in his awake state he is so very different at times. Like a 4 year old tantruming on a long distance road trip. It's sad and frustrating and sometimes comical. Yes. Comical. He gave his PT a hard time, complaining and saying he was done with her. She replies "I'm a bad therapist, huh?" Without missing a beat he says, "that's ok. I'm a bad patient" and smiled a little. He keeps trying to pull out all his charm to get what he wants (usually something dangerous). When he is told no he does everything but give them (and me) the finger. Just as suddenly he can turn to me and tell me he loves me. He says all this up and down of moods makes him feel so crazy. When he's panicked I have been trying to use anxiety grounding techniques I use with clients. It works. Until he says " hey, I know what you're doing now." He's too smart for his own good.
There is no discharge plan. The docs said we would give it a few days here to get him off drugs and lower confusion and then reassess safety and a plan to discharge. Wil has alwyas said he was unique. We just didn't expect that medically he would be SO unique.
Today: We moved to a new room (812) that is across from the nurses station so they can hear him and his bed alarm if he tries to get up. They are working on his potassium levels and discontinuing meds they think are causing the disorientation. An eval from psych is scheduled to help address agitation with a med that will have less side effects.
First the improvements: he ate an egg today! And pushed himself hard in PT (rolling himself down hall in wheelchair).
It was a really hard weekend for our favorite guy. Although the steroids ended last week and liver numbers are not worse, the weakness, slurred speech, disorientation, confusion, and now increasing agitation are wrecking havoc on mood and sleep. He is often begging and pleading and angry about almost everything. He is no longer getting all his mental status questions correct all the time. Today he thought it was 1992. He is still eating very little. He now has a catheter to reduce falls and accidents. And overnight we hit a new level of care: he has to have sitter or loved one in the room at all times because in his agitation he won't wait for help out of bed.
The team feels that the liver, along with paradoxical medicinal effects, is the cause and he needs to come off most meds, including a blood pressure med, so we can try to detoxify his system. If his body holds on to the toxins they have an option 2... A drug that will quickly clean him out in the form of diarrhea. We are crossing fingers it won't come to that one, especially since he is not very mobile.
Mood wise, if you know him, just imagine all opposites. Angry. Impatient. Demanding. Overly verbal. Defiant. When he is sleeping I can still see glimpses of the guy I know is still there. But in his awake state he is so very different at times. Like a 4 year old tantruming on a long distance road trip. It's sad and frustrating and sometimes comical. Yes. Comical. He gave his PT a hard time, complaining and saying he was done with her. She replies "I'm a bad therapist, huh?" Without missing a beat he says, "that's ok. I'm a bad patient" and smiled a little. He keeps trying to pull out all his charm to get what he wants (usually something dangerous). When he is told no he does everything but give them (and me) the finger. Just as suddenly he can turn to me and tell me he loves me. He says all this up and down of moods makes him feel so crazy. When he's panicked I have been trying to use anxiety grounding techniques I use with clients. It works. Until he says " hey, I know what you're doing now." He's too smart for his own good.
There is no discharge plan. The docs said we would give it a few days here to get him off drugs and lower confusion and then reassess safety and a plan to discharge. Wil has alwyas said he was unique. We just didn't expect that medically he would be SO unique.
Today: We moved to a new room (812) that is across from the nurses station so they can hear him and his bed alarm if he tries to get up. They are working on his potassium levels and discontinuing meds they think are causing the disorientation. An eval from psych is scheduled to help address agitation with a med that will have less side effects.
Friday, December 13, 2013
My own McDreamy
Jenny here. It was a hectic day for me....riding on 3 hours of sleep because I worked swing last night and had a training to give for a professional organization of which I'm a member. Then private practice and now here at the hospital. Although I'm brain dead, it was a good day.
It seems like most days I get home there is at least one card in the mailbox. I don't cry as much in the car on the way home now. That used to be my space and time for tears. Even before Wil was admitted it was the one place I could emotionally throw myself into the ashes of my grief so no one had to worry, including Wil. But this week I'm finding the tears when open the mailbox instead. Happy lovely tears. I sometimes don't even make it back inside before I'm ripping open the envelope for my dose of hope. And it makes me think about community. So many different communities that I've been blessed to be a part of through schooling or work or family or friendships. Community is important for survival.
Updates: Wil is OFF steroids. He is so very happy. Weak, slurred speech but no shaking. He actually was pleasant today and wanted to be wheeled around the halls! Although he's not up and walking it, it's a great start, especially in the attitude department. He did need some more good old Ativan for the anxiety in waiting for me to get here tonight. I could tell on the phone. He has gotten insistent on the need for me to be here all the time. As soon as I arrived, off to dreamland. At some point, with his permission, I might need a written blooper reel for the crazy stuff the steroids made him say and do.
His liver biopsy today went well. They went in through his neck so he barely has a cut! Results next week.
Yesterday I met with a rep from a local skilled nursing facility (SNF). They are coordinating with insurance. It's a bit of a copay but the facility is top rated and looks like a resort. Pool, gym, 63 acres total, and some folks in their 40's so he can have some peers. He will get some good PT in and hopefully regain some independence. It's further away but since we are looking at only a few weeks I think it's the right place for him. At this point we are just waiting to discharge...most likely early next week to the SNF. One step closer to home where he can recover that liver.
It seems like most days I get home there is at least one card in the mailbox. I don't cry as much in the car on the way home now. That used to be my space and time for tears. Even before Wil was admitted it was the one place I could emotionally throw myself into the ashes of my grief so no one had to worry, including Wil. But this week I'm finding the tears when open the mailbox instead. Happy lovely tears. I sometimes don't even make it back inside before I'm ripping open the envelope for my dose of hope. And it makes me think about community. So many different communities that I've been blessed to be a part of through schooling or work or family or friendships. Community is important for survival.
Updates: Wil is OFF steroids. He is so very happy. Weak, slurred speech but no shaking. He actually was pleasant today and wanted to be wheeled around the halls! Although he's not up and walking it, it's a great start, especially in the attitude department. He did need some more good old Ativan for the anxiety in waiting for me to get here tonight. I could tell on the phone. He has gotten insistent on the need for me to be here all the time. As soon as I arrived, off to dreamland. At some point, with his permission, I might need a written blooper reel for the crazy stuff the steroids made him say and do.
His liver biopsy today went well. They went in through his neck so he barely has a cut! Results next week.
Yesterday I met with a rep from a local skilled nursing facility (SNF). They are coordinating with insurance. It's a bit of a copay but the facility is top rated and looks like a resort. Pool, gym, 63 acres total, and some folks in their 40's so he can have some peers. He will get some good PT in and hopefully regain some independence. It's further away but since we are looking at only a few weeks I think it's the right place for him. At this point we are just waiting to discharge...most likely early next week to the SNF. One step closer to home where he can recover that liver.
Thursday, December 12, 2013
A day in the life...
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| Most of the day is spent like this...sleeping. But he is trying to do good on PT each morning too. The thumbs up is for last dose of steroids :) |
Rage Against the Machine
Jenny here.
It's been a hard week for Wil emotionally and physically. It's a blessing that I am starting to gain a grip on things more, but still so painful to see that he is struggling.
The steroids have really changed his usually sunny disposition. Yesterday he said "I'm a horrible terrible person" because he had been so agitated the night before that they had to give him a sedative. The nurse manager stopped by yesterday to check in with me. She said all the nurses have hated to see him struggle this week. He started here a happy, easy going guy, hopeful for recovery...with all the steroids and the liver causing such great fatigue, he can be combative, demanding, and never smiles. Being on fall risk was the last of his normal life to go. Now he shakes so much at times my heart skips a beat. Having grown up seeing my dad have seizures, he takes my breath away. Wil likes constants. Predicability, structure, plans. Every day has unknowns right now, so even the smallest change ruffles his feathers.
I've skipped out on work for 3 days to be here, helping him shower and eat and try to keep his head up. As I was showering him the other day he looked at me and said "You're teaching me how to take care of you if you ever need it." The caregiver club includes often feeling like you are muddling through, not doing complete justice to any part of your life, filled with impossible choices, small successes, joy, frustration. But in concrete moments like that, everything seems so clear. I leave and go home at night for the dogs, but also for my own rest and sanity. I've moved past *some* guilt in leaving because I see how much more charged up I am after I've been gone and slept well for a few hours. Guilt aside, it's still not easy to have your loved one begging and pleading for you to stay every time you leave. He sleeps when I am here because he doesn't sleep well when I am not here. When I wake up I send a text asking him if he's awake. The response I get from him is always the same: "on your way? please say yes." I said yes 14 years ago, I'm not about to start saying no now :)
Everything else we will figure out as it comes.
At some point I will get those thank you's out to all of you have been so kind. I'm so grateful for the encouraging words, the gifts, the time spent. I'm running around like crazy, but I'm ok. My bills are paid this month by unexpected generosity. Our dogs are taken care of and loved on even in my absence. I was trying to figure out how I can express what those acts of kindness have done. Wil is my world. And the help we have received have literally given me hours with Wil, allowed me to miss some work hours, allowed me to stop by the grocery store on my way home from work without rushing home and cook myself a meal, or allowed me to pick something up on the way to the hospital, or given me an extra hour of sleep or...allowed me to breathe. It has meant the world to me.
Updates:
Although his liver has not been on the decline, the numbers have plateaued for the last week and not been better. The ultrasound showed good function and blood flow, but they are doing a liver biopsy tomorrow just to be on the safe side. They still think he is dealing with a liver injury as a result of the chemo, but we will know more Tuesday.
This morning he took his last dose of steroids! He had been scheduled to have 4 more days, but after talking to the doctor and Wil getting upset and yelling "no, no more steroids," they all agreed it would be ok to stop early so he will not be as miserable. His doctor said that the shaking, irritability, anxiety, insomnia, and blood sugar (he has had to be on insulin during steroids) should all see a dramatic improvement over the next 2 days. The weakness, however, will take weeks to reverse. He has been cooperating and pushing himself in OT/PT here and made it all the way down to the other window of the unit to look at the sun today.
The discharge plan now is him leaving BMT unit this weekend or Monday and going to a skilled nursing home for rehab. He did not meet requirements for a hospital rehab floor but because he is not yet doing most activities of daily living (ADL's) independently, he needs some time to regain strength so he is safe at home. After that he will be home until his liver has healed enough to continue chemo, hopefully in time to ring in the new year with me.
It's been a hard week for Wil emotionally and physically. It's a blessing that I am starting to gain a grip on things more, but still so painful to see that he is struggling.
The steroids have really changed his usually sunny disposition. Yesterday he said "I'm a horrible terrible person" because he had been so agitated the night before that they had to give him a sedative. The nurse manager stopped by yesterday to check in with me. She said all the nurses have hated to see him struggle this week. He started here a happy, easy going guy, hopeful for recovery...with all the steroids and the liver causing such great fatigue, he can be combative, demanding, and never smiles. Being on fall risk was the last of his normal life to go. Now he shakes so much at times my heart skips a beat. Having grown up seeing my dad have seizures, he takes my breath away. Wil likes constants. Predicability, structure, plans. Every day has unknowns right now, so even the smallest change ruffles his feathers.
I've skipped out on work for 3 days to be here, helping him shower and eat and try to keep his head up. As I was showering him the other day he looked at me and said "You're teaching me how to take care of you if you ever need it." The caregiver club includes often feeling like you are muddling through, not doing complete justice to any part of your life, filled with impossible choices, small successes, joy, frustration. But in concrete moments like that, everything seems so clear. I leave and go home at night for the dogs, but also for my own rest and sanity. I've moved past *some* guilt in leaving because I see how much more charged up I am after I've been gone and slept well for a few hours. Guilt aside, it's still not easy to have your loved one begging and pleading for you to stay every time you leave. He sleeps when I am here because he doesn't sleep well when I am not here. When I wake up I send a text asking him if he's awake. The response I get from him is always the same: "on your way? please say yes." I said yes 14 years ago, I'm not about to start saying no now :)
Everything else we will figure out as it comes.
At some point I will get those thank you's out to all of you have been so kind. I'm so grateful for the encouraging words, the gifts, the time spent. I'm running around like crazy, but I'm ok. My bills are paid this month by unexpected generosity. Our dogs are taken care of and loved on even in my absence. I was trying to figure out how I can express what those acts of kindness have done. Wil is my world. And the help we have received have literally given me hours with Wil, allowed me to miss some work hours, allowed me to stop by the grocery store on my way home from work without rushing home and cook myself a meal, or allowed me to pick something up on the way to the hospital, or given me an extra hour of sleep or...allowed me to breathe. It has meant the world to me.
Updates:
Although his liver has not been on the decline, the numbers have plateaued for the last week and not been better. The ultrasound showed good function and blood flow, but they are doing a liver biopsy tomorrow just to be on the safe side. They still think he is dealing with a liver injury as a result of the chemo, but we will know more Tuesday.
This morning he took his last dose of steroids! He had been scheduled to have 4 more days, but after talking to the doctor and Wil getting upset and yelling "no, no more steroids," they all agreed it would be ok to stop early so he will not be as miserable. His doctor said that the shaking, irritability, anxiety, insomnia, and blood sugar (he has had to be on insulin during steroids) should all see a dramatic improvement over the next 2 days. The weakness, however, will take weeks to reverse. He has been cooperating and pushing himself in OT/PT here and made it all the way down to the other window of the unit to look at the sun today.
The discharge plan now is him leaving BMT unit this weekend or Monday and going to a skilled nursing home for rehab. He did not meet requirements for a hospital rehab floor but because he is not yet doing most activities of daily living (ADL's) independently, he needs some time to regain strength so he is safe at home. After that he will be home until his liver has healed enough to continue chemo, hopefully in time to ring in the new year with me.
Tuesday, December 10, 2013
"Mosul skkojsnamamsnskkskaa Nannakjwmmeksiwmw A I hate steroids"
Jenny here. I will be more excited than anything when Wil feels up to blogging! At this point he hasn't been able to read them and I hope I'm doing it justice. It's nice to give out info in one place.
"Mosul skkojsnamamsnskkskaa Nannakjwmmeksiwmw A I hate steroids." This is the text I got this morning from Wil on my way to the hospital. The poor guy shakes almost continuously when he's awake so holding the phone or texting is tough. He says it's painful ,sometimes, but mostly just very irritating. He's on edge. The nurse said this is one of the more severe cases she has seen of this side effect. He keeps pleading to have them stop the steroids. 5 more days of them. I think more than anything it's the shaking that keeps him on fall risk. He said he feels crazy. He keeps telling his legs to stop shaking "settle down Wil, settle down." Over and over. For hours.
He ate all his breakfast and managed to suffer through what I was calling "spa day." It's hard for him to tolerate touch but his skin needed lotion like nobody's business...as evidenced by the entire tub we used! His blood pressure is always lower when I'm here from what they tell me. It's sweet knowing he feels calm when I'm here. Torture hearing him beg for me to stay and say he hopes that all my clients cancel. But with his current issues I am relieved he is here and not home yet. In time sweet hubby, in time.
Today's updates: Sodium levels are up but he is not allowed to have water, just Gatorade, to keep it up. Liver numbers were worse today but they are still hopeful. Just to be on the safe side we met with a liver specialist and he will have an ultrasound later today. Most likely his liver had injury due to the chemo and the function is probably fine, it's just taking longer to heal, but the ultrasound will verify that theory. The rehab floor team came by early, before I got here. They are going to come back and reassess, still looking at transferring him but no word yet. He hasn't been able to walk the down hall today due to weakness and shaking so I'm hoping he can get some rehab before any discharge.
Wil has decided he wants a trip to Hawaii when this is all over. Everyone is invited. I tried to get him to discuss details to get his mind off the shaking. But he looks at me and says "I know what you're doing." I respond "helping plan a vacation?" You just can't pull one over on this guy. It was worth a shot. But I promised I would tell everyone to start saving their money. Wil wants a celebration luau...so mark your calendars for Spring 2017 y'all :)
"Mosul skkojsnamamsnskkskaa Nannakjwmmeksiwmw A I hate steroids." This is the text I got this morning from Wil on my way to the hospital. The poor guy shakes almost continuously when he's awake so holding the phone or texting is tough. He says it's painful ,sometimes, but mostly just very irritating. He's on edge. The nurse said this is one of the more severe cases she has seen of this side effect. He keeps pleading to have them stop the steroids. 5 more days of them. I think more than anything it's the shaking that keeps him on fall risk. He said he feels crazy. He keeps telling his legs to stop shaking "settle down Wil, settle down." Over and over. For hours.
He ate all his breakfast and managed to suffer through what I was calling "spa day." It's hard for him to tolerate touch but his skin needed lotion like nobody's business...as evidenced by the entire tub we used! His blood pressure is always lower when I'm here from what they tell me. It's sweet knowing he feels calm when I'm here. Torture hearing him beg for me to stay and say he hopes that all my clients cancel. But with his current issues I am relieved he is here and not home yet. In time sweet hubby, in time.
Today's updates: Sodium levels are up but he is not allowed to have water, just Gatorade, to keep it up. Liver numbers were worse today but they are still hopeful. Just to be on the safe side we met with a liver specialist and he will have an ultrasound later today. Most likely his liver had injury due to the chemo and the function is probably fine, it's just taking longer to heal, but the ultrasound will verify that theory. The rehab floor team came by early, before I got here. They are going to come back and reassess, still looking at transferring him but no word yet. He hasn't been able to walk the down hall today due to weakness and shaking so I'm hoping he can get some rehab before any discharge.
Wil has decided he wants a trip to Hawaii when this is all over. Everyone is invited. I tried to get him to discuss details to get his mind off the shaking. But he looks at me and says "I know what you're doing." I respond "helping plan a vacation?" You just can't pull one over on this guy. It was worth a shot. But I promised I would tell everyone to start saving their money. Wil wants a celebration luau...so mark your calendars for Spring 2017 y'all :)
Monday, December 9, 2013
Snow Days
Jenny here. And finally back at the hospital after being iced in 3 days!
As much as Wil has hoped it in to being, there is no way he is coming home today. Or this week. He failed his PT test this morning and is now wearing a fancy yellow bracelet (fall risk). He wasn't able to get out of the room with a walker. He has to sit to shower and needed my help to even complete it. I set off his bed alarm when I sat on it (it alerts staff he tried to get up if weight shifts too much)...it's like the no snuggle alarm!
All but one liver level has improved, but the one that hasn't has gotten worse today. His sodium is too low as well. He shakes all the time from the steroids and is very anxious. All three combined equal a weak, sleepy, worried, and disoriented guy. Last night he was scared something happened to me because he hadn't heard from me all day. But we had spoke just 2 hours before and several other times that day. He is still determined. He apologizes for "being a pain." That has to be the craziest thing he's ever said to me. There is no place I'd rather be.
Current plan: He has 8 more days of steroids. They are weaning him off anti nausea meds. He's eating salted soup, drinking Gatorade. Today a team from UTSW Zale rehab floor will come to assess and he may transfer over there to regain some mobility before going home. No chemo can happen until his liver heals. But they are still saying it will. So hopefully a week more to regain mobility and then maybe home.
As for the chemo regime, it's been decided his liver can't tolerate the pediatric protocol that would be the best treatment for the ALL. When chemo starts back up he will be on the adult protocol. It may work well too. It's still intense and we can expect a 5-21 day inpatient stay when it starts up (5 if they count his current stay as time served ;) Prayers that this new regime will work just as well! Typically the adult protocol has lower effectiveness but we are still looking at and believing for curable intent.
A few people have asked how I am. I'm OK. Every day is different. Every day has some wonderful and some tears. But isn't that life for everyone? I'm reminded this week about why I adore cold and winter. Hot cocoa and soothing soup and warm bread. They don't hold the same comfort when it's 110 degrees outside. It's not so much that I love freezing. I love coming in from the cold. We love and thrive and grow through extremes. They make us feel alive. Each day of this "life blizzard" I lose my way. But I also somehow manage to regain focus and come in from the cold...to enjoy both sides for what they are: journey companions.
But it's because we aren't alone that it's possible. Thanks for hanging in there with us. <3
As much as Wil has hoped it in to being, there is no way he is coming home today. Or this week. He failed his PT test this morning and is now wearing a fancy yellow bracelet (fall risk). He wasn't able to get out of the room with a walker. He has to sit to shower and needed my help to even complete it. I set off his bed alarm when I sat on it (it alerts staff he tried to get up if weight shifts too much)...it's like the no snuggle alarm!
All but one liver level has improved, but the one that hasn't has gotten worse today. His sodium is too low as well. He shakes all the time from the steroids and is very anxious. All three combined equal a weak, sleepy, worried, and disoriented guy. Last night he was scared something happened to me because he hadn't heard from me all day. But we had spoke just 2 hours before and several other times that day. He is still determined. He apologizes for "being a pain." That has to be the craziest thing he's ever said to me. There is no place I'd rather be.
Current plan: He has 8 more days of steroids. They are weaning him off anti nausea meds. He's eating salted soup, drinking Gatorade. Today a team from UTSW Zale rehab floor will come to assess and he may transfer over there to regain some mobility before going home. No chemo can happen until his liver heals. But they are still saying it will. So hopefully a week more to regain mobility and then maybe home.
As for the chemo regime, it's been decided his liver can't tolerate the pediatric protocol that would be the best treatment for the ALL. When chemo starts back up he will be on the adult protocol. It may work well too. It's still intense and we can expect a 5-21 day inpatient stay when it starts up (5 if they count his current stay as time served ;) Prayers that this new regime will work just as well! Typically the adult protocol has lower effectiveness but we are still looking at and believing for curable intent.
A few people have asked how I am. I'm OK. Every day is different. Every day has some wonderful and some tears. But isn't that life for everyone? I'm reminded this week about why I adore cold and winter. Hot cocoa and soothing soup and warm bread. They don't hold the same comfort when it's 110 degrees outside. It's not so much that I love freezing. I love coming in from the cold. We love and thrive and grow through extremes. They make us feel alive. Each day of this "life blizzard" I lose my way. But I also somehow manage to regain focus and come in from the cold...to enjoy both sides for what they are: journey companions.
But it's because we aren't alone that it's possible. Thanks for hanging in there with us. <3
Sunday, December 8, 2013
Month One--Complete!
One month ago today we were told Wil had ALL. Whew!
Today during rounds, which I had to miss due to icy roads, they told Wil that although his liver has not gotten worse, it has not gotten better enough for chemo to restart this week. Because of that they have decided to send him home to recover. Discharge planning has begun...at hospital and at home. I have a list of prep to do but I just found out Friday that my FMLA for my part time weekend job was approved (3rd times the charm) so I'm off today to get his room and bathroom ready (which will be pet free...thankfully we had just bought a new mattress for the guest room on Labor Day!).
Technically, although we thought yesterday he was considered in remission, after the full report came back he actually has .04 detectable leukemia cells. But, he was only half way through the induction round. Had he been able to finish that probably would have been 0. I will know more tomorrow because my info today is being relayed through a still weak Wil, but it looks like we might skip right to consolidation therapy (the stages of chemo treatment go from induction, to consolidation, to maintenance). He will need another bone marrow biopsy later to check for complete remission (CR) again.
Tomorrow morning we will meet with the OT, PT, doctor, social worker, and probably the nurse coordinator. We will have a better plan for home health needs at that point. Once his liver is better chemo will resume. We still aren't certain if it will be inpatient or outpatient but it looks like we are leaning towards outpatient! Cross your fingers. He will be home by Tuesday. Marking one month in captivity. :)
Wil said he is already packing up his clothes and tree. He is looking forward to homemade soup and mashed potatoes. He is one excited guy. While the liver issue and early d/c are unexpected it means he should be home for the holidays. And for that we celebrate!
I will keep folks posted on visiting after I get educated more :)
Today during rounds, which I had to miss due to icy roads, they told Wil that although his liver has not gotten worse, it has not gotten better enough for chemo to restart this week. Because of that they have decided to send him home to recover. Discharge planning has begun...at hospital and at home. I have a list of prep to do but I just found out Friday that my FMLA for my part time weekend job was approved (3rd times the charm) so I'm off today to get his room and bathroom ready (which will be pet free...thankfully we had just bought a new mattress for the guest room on Labor Day!).
Technically, although we thought yesterday he was considered in remission, after the full report came back he actually has .04 detectable leukemia cells. But, he was only half way through the induction round. Had he been able to finish that probably would have been 0. I will know more tomorrow because my info today is being relayed through a still weak Wil, but it looks like we might skip right to consolidation therapy (the stages of chemo treatment go from induction, to consolidation, to maintenance). He will need another bone marrow biopsy later to check for complete remission (CR) again.
Tomorrow morning we will meet with the OT, PT, doctor, social worker, and probably the nurse coordinator. We will have a better plan for home health needs at that point. Once his liver is better chemo will resume. We still aren't certain if it will be inpatient or outpatient but it looks like we are leaning towards outpatient! Cross your fingers. He will be home by Tuesday. Marking one month in captivity. :)
Wil said he is already packing up his clothes and tree. He is looking forward to homemade soup and mashed potatoes. He is one excited guy. While the liver issue and early d/c are unexpected it means he should be home for the holidays. And for that we celebrate!
I will keep folks posted on visiting after I get educated more :)
Saturday, December 7, 2013
Stuck
Jenny here.
Well, we have been iced in for 2 days and tomorrow doesn't look great. Normally any kind of winter weather in Texas makes me want to jump up and down. But not this year. Wil is pretty down right now. Texts, phone calls, tv, music...nothing helps and he says everything just takes so much energy. I'm pretty cut off from him all day with just a few short texts or phone calls in between him sleeping. Our last call tonight was a tear jerker for me. He is a pretty upbeat guy. I've never heard him use the word miserable so many times. He is homesick. He just kept saying "I want to come home." It makes me remember my dad making half conscious calls from his room when I was a kid, him saying he wanted to come home. This whole thing is just unearthing a lot of buried memories. I'm homesick for Wil too. But I'm doing my best to rest while I'm stuck at home away from him. I feel so blessed that not a day goes by without someone near or far sending a message. Once Wil is feeling better he will get to appreciate these too.
His jaundice is hanging on. Hallucinations have pretty much tapered off but his conversations can still seem to suggest he is disoriented at times. The jaundice is not worse, but his chemo is still up in the air until his liver is OK. He did hit the neutropenia wall and is in an up swing because the chemo was delayed last week. What that means for him is when chemo starts back up he will probably have to hit neutropenia again. In his words, "it really sucks." He is on fall risk for safety because he has been feeling dizzy and weak.
MRI results showed the tumor has not gotten smaller like they had hoped. But it's not bigger either and he is in no pain from it anymore. We are not sure if they will recommend any other treatment for it. He is still on constant steroids to try to shrink it and it's driving him crazy. He is so fatigued yet it makes his legs want to move constantly which tires him more.
His bone marrow biopsy showed that he is now in remission. In terms of ALL this is a great first step and ups his cure rate! But unlike some other types of cancer this means we are just in the first lap of a 3 year race. We are happy. But I think for both of us the idea of how much there is to come (the bulk of treatment is after remission) and living with so many questions is tiring and we are still adjusting. We are both counting down the days until he might be home--it doesn't even feel like the holidays.
Well, we have been iced in for 2 days and tomorrow doesn't look great. Normally any kind of winter weather in Texas makes me want to jump up and down. But not this year. Wil is pretty down right now. Texts, phone calls, tv, music...nothing helps and he says everything just takes so much energy. I'm pretty cut off from him all day with just a few short texts or phone calls in between him sleeping. Our last call tonight was a tear jerker for me. He is a pretty upbeat guy. I've never heard him use the word miserable so many times. He is homesick. He just kept saying "I want to come home." It makes me remember my dad making half conscious calls from his room when I was a kid, him saying he wanted to come home. This whole thing is just unearthing a lot of buried memories. I'm homesick for Wil too. But I'm doing my best to rest while I'm stuck at home away from him. I feel so blessed that not a day goes by without someone near or far sending a message. Once Wil is feeling better he will get to appreciate these too.
His jaundice is hanging on. Hallucinations have pretty much tapered off but his conversations can still seem to suggest he is disoriented at times. The jaundice is not worse, but his chemo is still up in the air until his liver is OK. He did hit the neutropenia wall and is in an up swing because the chemo was delayed last week. What that means for him is when chemo starts back up he will probably have to hit neutropenia again. In his words, "it really sucks." He is on fall risk for safety because he has been feeling dizzy and weak.
MRI results showed the tumor has not gotten smaller like they had hoped. But it's not bigger either and he is in no pain from it anymore. We are not sure if they will recommend any other treatment for it. He is still on constant steroids to try to shrink it and it's driving him crazy. He is so fatigued yet it makes his legs want to move constantly which tires him more.
His bone marrow biopsy showed that he is now in remission. In terms of ALL this is a great first step and ups his cure rate! But unlike some other types of cancer this means we are just in the first lap of a 3 year race. We are happy. But I think for both of us the idea of how much there is to come (the bulk of treatment is after remission) and living with so many questions is tiring and we are still adjusting. We are both counting down the days until he might be home--it doesn't even feel like the holidays.
Tuesday, December 3, 2013
Hello Hallucinations
Just a quick update as requested by Wil.
Everything has been pushed back for now while his liver continues to recover. After several days of worsening jaundice and the onset of hallucinations, it appears the liver function has stopped declining, so we can expect it to start improving now. Until yesterday I had no idea why he had been so disoriented and upset with me about conversations he thought we had....come to find out he also thought he was having more visitors than there were in reality and thinking he had ordered breakfast when he had not...he is aware of it now but still experiencing it from time to time. His oncologist says that 98% of the time the liver recovers.
Wil was happy to keep down some mashed potatoes and chicken soup tonight. He also has a new bed that's not so crazy and loud (for those who have visited you know what I mean lol).
The MRI of his tumor/spine and the bone marrow biopsy that was scheduled for today will most likely be tomorrow. We are hoping to see little to no tumor left and less than 5% cancer cells in the marrow. It would be a small, but great step in recovery with the hope to be in remission by the end of the month.
From what we understand, in ALL, remission *hopefully* happens quickly. Then, it's the rest of the chemo treatment that takes years to finish to ensure that every nook and cranny of his marrow is zapped and cleaned out. I've met some great family members up on BMT lately but, gosh, many of them have been up there on/off for months and months. As one family member said, "it's not the ALL that kills, it's everything else" because these brave folks have months to years of compromised immune systems. This man's loved one is battling mouth sores (i.e. trying to not die of an infection while going through month 6 of heavy chemo). That floor of 18 rooms holds more hope and comfort (ok and, honestly, fast forward fear) than anywhere else for me.
The newest chemo has been pushed to next week, assuming his liver cooperates. By our count that means we will be ringing in the new year from his hospital room. But I hear we have a great view of the fireworks. And I'm bringing the champagne for toasting. I couldn't be more excited for a new year.
Everything has been pushed back for now while his liver continues to recover. After several days of worsening jaundice and the onset of hallucinations, it appears the liver function has stopped declining, so we can expect it to start improving now. Until yesterday I had no idea why he had been so disoriented and upset with me about conversations he thought we had....come to find out he also thought he was having more visitors than there were in reality and thinking he had ordered breakfast when he had not...he is aware of it now but still experiencing it from time to time. His oncologist says that 98% of the time the liver recovers.
Wil was happy to keep down some mashed potatoes and chicken soup tonight. He also has a new bed that's not so crazy and loud (for those who have visited you know what I mean lol).
The MRI of his tumor/spine and the bone marrow biopsy that was scheduled for today will most likely be tomorrow. We are hoping to see little to no tumor left and less than 5% cancer cells in the marrow. It would be a small, but great step in recovery with the hope to be in remission by the end of the month.
From what we understand, in ALL, remission *hopefully* happens quickly. Then, it's the rest of the chemo treatment that takes years to finish to ensure that every nook and cranny of his marrow is zapped and cleaned out. I've met some great family members up on BMT lately but, gosh, many of them have been up there on/off for months and months. As one family member said, "it's not the ALL that kills, it's everything else" because these brave folks have months to years of compromised immune systems. This man's loved one is battling mouth sores (i.e. trying to not die of an infection while going through month 6 of heavy chemo). That floor of 18 rooms holds more hope and comfort (ok and, honestly, fast forward fear) than anywhere else for me.
The newest chemo has been pushed to next week, assuming his liver cooperates. By our count that means we will be ringing in the new year from his hospital room. But I hear we have a great view of the fireworks. And I'm bringing the champagne for toasting. I couldn't be more excited for a new year.
A small step back
Jenny here again. Wil has not been up to blogging. If you know him well you know he loves entertainment, media, sports, etc. Sunday he could not even stay awake to watch any football. I was there most of the day and he slept through all the games.
We also found out yesterday that his liver is having some trouble since the last chemo. They had been watching levels because jaundice can be a side effect. Sunday we were told he was in fact jaundiced and that chemo was on hold for this week until his liver recovers enough. Today his levels were worse so he is on some additional meds to try and correct this. With all the meds for nausea (4 total), 2 steroids, pain meds, and now the meds for the jaundice, he just sleeps a lot. Eating is a struggle. Everything seems to eventually make him feel sick. Sitting up, standing, a hug...it all makes him feel sick. He's a little disorientated when he is awake but still walked the hallway several times and showered. Looks like he will be in past Christmas at this point.
Tomorrow he goes for his second CT guided bone marrow biopsy. Hoping for good results.
I am...holding tight. It's hard to believe its almost the end of the year. 10 months ago we were moving and celebrating his 40th birthday. 9 months ago all this medical stuff started.
I walked past the fresh cut Christmas trees a little more slowly than usual at the store. Listened to Cake at insane levels in my car with the sun roof open. Did my best to be normal through private practice sessions (it's hard to be your most creative self when your heart is living outside your body on the BMT unit and you're just tired). I made myself dinner. Played with the dogs. Realized I've never really lived alone because I went from home, to college, to roommate, to marriage. At different times in our marriage one of us has traveled for work or we have worked opposite shifts. Sleeping alone and eating alone just come with it, for short periods of time. But not having a coherent partner to process things with and say goodnight to makes being alone at home just lonely.
We also found out yesterday that his liver is having some trouble since the last chemo. They had been watching levels because jaundice can be a side effect. Sunday we were told he was in fact jaundiced and that chemo was on hold for this week until his liver recovers enough. Today his levels were worse so he is on some additional meds to try and correct this. With all the meds for nausea (4 total), 2 steroids, pain meds, and now the meds for the jaundice, he just sleeps a lot. Eating is a struggle. Everything seems to eventually make him feel sick. Sitting up, standing, a hug...it all makes him feel sick. He's a little disorientated when he is awake but still walked the hallway several times and showered. Looks like he will be in past Christmas at this point.
Tomorrow he goes for his second CT guided bone marrow biopsy. Hoping for good results.
I am...holding tight. It's hard to believe its almost the end of the year. 10 months ago we were moving and celebrating his 40th birthday. 9 months ago all this medical stuff started.
I walked past the fresh cut Christmas trees a little more slowly than usual at the store. Listened to Cake at insane levels in my car with the sun roof open. Did my best to be normal through private practice sessions (it's hard to be your most creative self when your heart is living outside your body on the BMT unit and you're just tired). I made myself dinner. Played with the dogs. Realized I've never really lived alone because I went from home, to college, to roommate, to marriage. At different times in our marriage one of us has traveled for work or we have worked opposite shifts. Sleeping alone and eating alone just come with it, for short periods of time. But not having a coherent partner to process things with and say goodnight to makes being alone at home just lonely.
Sunday, December 1, 2013
Hard to Stomach
Jenny here again. All of Wil's best intentions about blogging are made hard this week because of lack of appetite/eating/throwing up. If it's not one it's one of the others. Wil has lost about 40lbs over the past month. This is a rare time when everyone is thankful he had some to lose. You just hate to see someone lose it like this. But only being able to stomach Ensure or Cheerios or a little fruit just isn't enough. Keep in mind he is on a saline drip and constant steroids. The rest of us would be gaining weight with all that.
He has been sleeping a lot too and his energy is lower. Still, the nurses are impressed with his tenacity and trying to walk the halls several times a day plus shower. The doctors keep giving us more hope as well. The people who have visited or sent cards have helped him keep his spirits up. The visits may be shorter now because he gets sleepy, but he truly does need them to stay sane!
Our thanksgiving was quiet. Wil LOVES Christmas and had been excited about decorating for months. I thought, given we don't know when he's being released yet, we should decorate his room. I brought up a tree, Christmas jammies, and Mary J Blige's new Christmas CD. We finished just in time for his first transfusion. He has been emotional and started to cry. I thought he was getting nausea but he looked up and said "I'm just happy." I'll remember that moment forever. No other Christmas tree trimming in the past compares.
Level wise his immune system has not hit "0" yet so he's on some additional steroids to help bring it down. He has to get to "0" to kill those cells. Then they will bring him back up. Then it starts again. That's chemo rounds in a nutshell.
He has been sleeping a lot too and his energy is lower. Still, the nurses are impressed with his tenacity and trying to walk the halls several times a day plus shower. The doctors keep giving us more hope as well. The people who have visited or sent cards have helped him keep his spirits up. The visits may be shorter now because he gets sleepy, but he truly does need them to stay sane!
Our thanksgiving was quiet. Wil LOVES Christmas and had been excited about decorating for months. I thought, given we don't know when he's being released yet, we should decorate his room. I brought up a tree, Christmas jammies, and Mary J Blige's new Christmas CD. We finished just in time for his first transfusion. He has been emotional and started to cry. I thought he was getting nausea but he looked up and said "I'm just happy." I'll remember that moment forever. No other Christmas tree trimming in the past compares.
Level wise his immune system has not hit "0" yet so he's on some additional steroids to help bring it down. He has to get to "0" to kill those cells. Then they will bring him back up. Then it starts again. That's chemo rounds in a nutshell.
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