Kris Fuller, CancerWifeNinja sharing my journey... as my husband battles Stage 4 Colon Cancer.
|Posted by email@example.com on July 17, 2020 at 9:35 PM||comments (11)|
His pain is over, but mine has just begun.
This blog for CancerWifeNinja feels wrong now, feels different.
I'm starting the section called 'And Now...?' for the next entries.
|Posted by firstname.lastname@example.org on July 16, 2020 at 7:10 AM||comments (4)|
Ben's mom arrives and joins us.
We three ladies hug and cry,holding one another, beside Ben.
Your mama's here, I say.
Yea, he breathes...and it's barely audible.
He knows you're here, I tell her.
Oh, my boy. My sweet, sweet boy. She places her hands on his on his heart as his breathing continues to slow.
We continues our stories about his life, family, Mia, the kids, his house, gardening, our wedding. Slowly, his one word breaths turn to gentle nods, then eventually silence.
We sat with him a couple more hours.... and finally, his last breath was released.
We cried again. We held each other and said, 'It's not fair.' We spent a little more time with him and when the nurse told us we could have all the time we wanted, we said 'We are okay.'
His mom said, 'He's already left this place, his spirit is free.'
And as I looked at the shell of the man I loved, I knew it was true.
His spirit was free, he was no longer here.
His time with me was way too short, but he got to call it...
It's a terrible ending and I hate it so much.
|Posted by email@example.com on July 16, 2020 at 4:35 AM||comments (0)|
I phone his mom at 130. She doesn't answer. She calls me back at 132.
You need to come to the hospital. It's his last night.
Oh no, no, no. I'm on my way. I cry fresh tears for Ben's mom.
Your mom is on her way, I say.
Yes, he gasps. He can hear and understand but he's down to one word answers now.
He's heavily sedated.
Are you in pain? I ask. No, he gasps.
His raspy breaths continue but he feels no pain.
|Posted by firstname.lastname@example.org on July 16, 2020 at 4:05 AM||comments (0)|
What happens now? I ask.
We keep him in a painfree, peaceful state. He will eventually stop breathing but he will not be in pain. We will make sure of that.
Can my sister come in?
When the answer is 'yes', I am relieved. Lisa is by my side in moments. We each hold one of Ben's hands. She reaches over and grabs my other hand and we sit in this awful moment together.
Ben's breathing is sharp and we tell him stories. Thank you for building me a beautiful house, I say. I love it so much. I love our cat Mia. She's your cat, you know. Your baby. I'm am going to get her un-spayed and have more kittens. He smiles that smile and nods at me. Few words, but comprehending.
Lisa talks to him too. My boys just love you. Lisa shares memories, of love and family. Lizzie adores you. And me? I've been so lucky to have you as a brother. I wish I had more time to learn about gardens and greens with you. You were just the best man for my sister, I don't know how we will get on without you.
Between tears, we tell stories. We tell Ben how much he means to us, how much we love him and how incredible he was.
|Posted by email@example.com on July 16, 2020 at 3:05 AM||comments (0)|
The paramedics tell us, Meet us at the hospital, but don't speed in our path. Follow the law and drive safe. I'm glad they said it. It didn't occur to me.
They leave with Ben and Lisa has already packed 2 bags. One for Ben, and one for me. Clean clothes, toothbrushes, waters. We get in the car and drive. I can't believe they asked what I want! (It's not until the next day that I realise... we have a 'wishes to die at home' request in our papers... How were they to know we didn't get that plan made yet? Everything went too fast.)
We are at the hospital shortly after the ambulance. I enter and find Ben in an ER room.
It's just the two of us. He's had more pain meds and is outwardly calmer. But his breathing is still labourous and he's on double oxygen now- a tube in his nose and a mask on his mouth. His eyes are wide, he's fully awake. I take his hand as the doctor rolls in with the ultrasound machine.
"Hi, hi, are you okay?" I whisper and squeeze his hand.
Without any fanfare, he looks me dead in the eyes and says, 'I'm gonna...(gasp)... Call It...(gasp)...this ...(gasp)...is my (gasp)....last ....(gasp)....night...."
"No!" I sob. "Nooo...."
Tears fill my eyes. I pause and look at him. Raspy, gasping, skinny, in pain. Everything he did not want. And in that moment, I know....
Slowly, I exhale.
"Okay," I say to him with a brave smile. I turn to the doctor, 'Doctor? Did you hear my husband? He's ready to die. We have paperwork already done..."
The doctor nods and then softly speaks, "Your husband is correct. I see here a blood clot in his lungs. This is his last night."
I burst into tears and clutch Ben's hand, my head drooped down and my heart broken.
After a moment, I look up. Our eyes meet, I purse my lips to stop crying and give him my best smile. It's weak but I know it's important for him.
'Okay, honey. We heard you. Tonight is your last night. You called it.'
|Posted by firstname.lastname@example.org on July 16, 2020 at 2:45 AM||comments (0)|
The two paramedics move Ben from the electric bed in our living room to a transport chair. There are braces, straps and foot holds. He's too tall and it's not smooth. My heart breaks with every awkard move. My sister and I help wheel him out- she carries his oxygen tank, they lift the metal chair and I support his head .. all the while talking to him.
I'm right here. Are you okay? You're okay. You'll be okay. We're almost there. Hang on sweetheart, hang on.
We get Ben- in the chair- to the gurney. It's propped up beside the ambulance. Time slows as the four of us unclip and plan to lift and transfer him. I see pain in his face and tears in the corner of his eyes. Finally, we lay him flat and he finds a small relief- he is no longer being man-handled.
Paramedic number two pushes the 'lift' button and as the gurney raises to a height for loading into the ambulance, I say, 'Honey, they are raising you up to me for a kiss. Bringing your lips to mine.'
He's delirious and in pain, but he looks right at me and puckers his thin lips. I kiss them softly and then they load him into the ambulance.
|Posted by email@example.com on July 16, 2020 at 2:10 AM||comments (0)|
The ambulance arrives. They check his vitals. Heartrate 169. Too fast, too hard. They give him oxygen and cover questions rapidly. Meds? Pain? Prognosis? Events? History? Allergies?
I answer efficiently. God, I hope each answer is correct. Here, we have paperwork. This is his home medical journal, check it. This is what he's had, what he's on. I am relieved that we are such excellent record-keepers. I pass more papers to paramedic one and say, 'Here, this is for you, too.'
'What is your wish?' paramedic one asks me, 'What would you like us to do?'
What do you mean? Take him to the hospital! You can't leave him here with me in this crisis. He can't breathe. I don't understand the question.
Okay, we will transport him to the hospital. Don't worry.
|Posted by firstname.lastname@example.org on July 16, 2020 at 2:05 AM||comments (0)|
Sit me back down, he commands. Gently, we reverse the lift. His hug is still hard around me and we lean down. Once he sits back down, he continues to slump further down. His breathing is raspy and he beats his chest with his fist.
He's gasping for a better breath. Call 911, I say to Lisa. I don't hesitate and she doesn't second guess it. She calls immediately. I sit in front of Ben, he is slumped and struggling.
I'm so grateful for Lisa. My attention and strength is for Ben. I need both arms to hold him up and I couldn't imagine needing one hand to make a phone call. I hear her, vaguely. She is right beside us, but it sounds like she is in the distance, far away. 'Raspy, yes. Gasping, yes. Heart rate is too strong. Yes, Fuller. Stage 4 Cancer.' She's all business with the answers. Thank god she knows them.
I barely hear her, I focus on Ben. My hands are on his shoulders and I look into his eyes.
Just breathe, honey. I'm right here. Slowly, slowly. The ambulance is on the way, we are okay. You're okay. In that moment, I notice that he does not protest, that he knows he needs 911 and my heart stops in my chest. This is bad, so bad. I realise Ben is out of it, trapped in his pain and breathing hardship.
It's okay, I'm right here. I'm right here.
|Posted by email@example.com on July 16, 2020 at 2:00 AM||comments (0)|
Lisa hangs out, lingering, chatting. I want her to stay overnight but we are both leary. Ben, is this okay? Yes, of course. He answers with no hesitation and we smile. We will sleep together in the bedroom and he's already on the electric bed in the living room.
At 11pm I help him with his meds, but notice his pain seems ...high. Do you need some breakthrough morphine? I ask. He nods and I inject 2ml.
He says he needs to stand, but doesn't think he can do it.
No problem, I say. Let me hug you and we can stand together, like we did before. He is uncertain. He doesn't think I can do it this time. It's okay, I say encouragingly, Lisa will help us. She hears my comment and is by my side in seconds.
I squat to brace myself and lean into him. Gently, we hug. I count to three: 1, 2, 3!... and we stand together, with Lisa on the side, ready to support.
But once it starts, I know I am lifting alone. I silently swear I won't drop him. I dig deep, grit my teeth and muster strength to lift us both. It exhausts me, but we are up. We stand by the bedside... but he doesn't let go. He is breathless from this lift, this sudden movement of up. I can feel his tension and I soothe, 'Just stand here with me. I'm here. I've got you. I've got you.'
His arms are wrapped around my neck and his head slumps onto my shoulder. We stand together in silence, it's the three of us. Ben's breathing is shallow and as I feel his body press to mine, I am suddenly aware of his heartbeat. It's too fast, and too strong. It thumps hard... I feel the beats..bam!bam!bam!bam!bam!... into my breasts. I hold him, and hold him up, with my sister at my side. Her arms are at the ready, loosely surrounding his hips and mine.
We make eye contact and we are both unsure of what to do next with Ben. So we stand in silence, together, holding my husband up.
|Posted by firstname.lastname@example.org on July 14, 2020 at 6:10 PM||comments (0)|
I have finally connected the dots with our house. We found a notary who succeeded in getting my name added to title. He's all business, and has a thick accent (I feel it's Romanian or Russian, former maffia for sure).
Maffia: Vat your husband do?
Me: Well, um, sort of gardens, and sort of unemployed, he was starting a nursery...
Maffia, interrupting: Businessman. You? Vat?
Me: Author. No, artist. No, speaker. Well, it's a lot of things, but also, right now, in related news, I'm not really working and we...
Maffia, interrupting. Businesswoman. Ok, you go now. I do papers. I call you.
He succeeded and even did a house call for signing. He arrived while Lisa was here and she almost barred him at the gate. Some strange man in a suit is here...
We are so relieved to have both names on title now.
|Posted by email@example.com on July 14, 2020 at 5:05 PM||comments (0)|
Ben's brother and wife, Christine arrive. Shortly after, Lisa shows up. I've missed my sister and it's a perfect mix. The girls leave the brothers to chat. We take a walk to get me out of the house for a bit.
When we return, we have drinks on the deck and Ben rests. They spend the whole afternoon with us and I'm so pleased.
|Posted by firstname.lastname@example.org on July 14, 2020 at 2:55 PM||comments (2)|
Let's call your mom and have her over tomorrow for a visit, too. She will want to see you as much as she can.
We call her and we both feel a bit better. We ask her to bring a salad. One of Ben's favourite with ichiban noodles and cabbage. We made a list of all the salads we love. We want to make them all in the next few days to eat fresh and healthy.
We will find joy, celebrate this summer with family, gardens and cooking.
And in the back of my mind is that hope. That hope that some miracle will come. He will just spring up one morning and be his old self. Maybe that's this week... because what we have now just can't be true. His weak body, his puffy legs, it's just not him.
|Posted by email@example.com on July 14, 2020 at 2:45 PM||comments (0)|
Ben's brother is coming over today. Ben has been resisting visitors because he hasn't felt his best. He's felt tired. He likes it when he's at his best. When he's energetic and able.
Well, I think things have changed now, I say. I think we need to open the doors to your mom and family for any day they like. They don't care if you need to sleep. And what else for joy? I ask.
I'd really like to get that new green house built. He starts and I smile. Same old Ben. His joy is in building, making, working.
I listen for a while, then gently say, I think you need to consider something less physical. I think we need to find a way to wheel you out to the garden where you can pick peas off the vines and thin carrots. You can prune tomotoes and worry about bugs on leaves. Maybe not building.
He considers this for a long while and slowly starts to realize. That is the joy he will find and feel. You just won't be building this summer. He agrees, but we both want to save the lumber. The lumber for his projects... grow boxes, greenhouses, soil sifting. Probably he can build them all next summer. After this leg of the journey. We know it makes no sense, but we like the lumber sitting there, ready.
|Posted by firstname.lastname@example.org on July 14, 2020 at 2:40 PM||comments (0)|
We talked to Dr. Oncology today over speaker. Ben's very weak, and his blood doesn't look like it can handle much more.
Where are we with everything then? I ask.
Ben decides. He doesn't want any more chemo. It could work, not work or kill him at this point. No more, he says.
And so now what? I ask.
Find joy. Find the joy in your life and live your best. With joy every day.
How long? I ask. I know you don't have a crystal ball, but is it Christmas? Next summer? I'm hopeful.
There is a pause. A sigh.
Dr. Oncology finally replies: Weeks.
|Posted by email@example.com on July 13, 2020 at 11:55 PM||comments (0)|
I casually walk by the couch. I smooth the compression socks out. Then I pick up the compression socks and move them to the other side. As I drape them over the arm, keeping it casual, I say, 'These are clean....' and I trail off.
Have I done it? Have I snuck in a suggestion... without making a suggestion? I'll never know. The socks have been sitting there. Clean. For 4 hours now. I'm about to burst.
I. will. not. suggest. putting. the. socks. on.
|Posted by firstname.lastname@example.org on July 13, 2020 at 11:45 PM||comments (0)|
It has come to my attention that I make suggestions all day long and it's becoming exhausting for Ben.
At first, I protest. Give me an example, I say with snark, and as soon as he starts, I'm ready for him to stop:
Do you want a sandwich?
What about turkey?
Watermelon or strawberries?
Shall I put your compression socks on?
Is this light too bright?
Should I bring the meds to you?
Or are you coming to the kitchen?
How is your middle today?
Are your legs any better?
Will you shower today?
Do you think we should get a shower bar?
Do you want to take a small walk?
What about some salad now?
Okay! I get it. I'm annoyed. I just want to be helpful.
I'll just tell you when I want something, he says.
I bite my lip then say, I worry that you won't. But I will try.
|Posted by email@example.com on July 13, 2020 at 11:35 PM||comments (0)|
HOW am I behind on laundry again? Every towel in this house has been used. The bath/shower experience was very splashy, but the build up before this was huge to start with.
I commit: I will NOT do floor-to-bed-to-floor with my clean piles... again!
Slowly, sadly, I fold. The putting-way process is agony and it takes me all day (with breaks, of course, my laundry stamina is low). We still have 2 more loads of bedding to do, but the main job is done.
I really want us both to have fresh bedding every Sunday. I know, today is Monday and I have won the battle for Ben. Not for me, though. It's fine. I can handle another night. There's nothing like crawling into freshly washed, crisp sheets... but I am resigning to wait.
|Posted by firstname.lastname@example.org on July 12, 2020 at 11:30 PM||comments (0)|
His legs are so puffy and swollen. And he is still delicate around the middle- bruising from blood thinners, tender from eating, cancer, chemo, the whole lot.
We saran-wrap his arms for a shower (both of them- to protect his PICC and sub-Q lines- we are down to three!) I sit on the edge of the tub to help scrub his legs and feet. Before he can protest, I sneak in the citrus-sea-salt scrub. But he's wise to me. 'Don't use that oily garbage on me. It will just make me slip and slide'.
I protest, but he wins.
The hardest thing ever is to wash one foot and not be allowed to 'just even it out'. It's not in my nature and I'm so dismayed that one leg is exfoliated, moisturized and well loved. And the other sad leg has been utility-cleaned with bar soap.
It's not fair. I will lose sleep over this. Poor lefty.
|Posted by email@example.com on July 12, 2020 at 8:20 PM||comments (0)|
This weekend was a crazy mix of joy, excitement and exhaustion. Just before Ben was diagnosed, I met Elizabeth Hamilton-Guarino online. She's an incredible person in so many ways. We became friends fast! Right away, we started talking every day, sharing business ideas and supporting one another's goals and dreams. As COVid and closures surrounded both of us, we started writing together.
She was there when we got the news about Ben. I was there when her four sons were sent home from college. We've never met, but bonded in a incredibly special way, at an incredibly hard time. She's changed my life and we both tell each other how much the impact is mutual. We can't wait to meet. One day. (She even sent me 60 copies of her book, Percolate: Let Your Best Self Filter Through to use as gifts at my Ladies Day events. It's a wonderful book about personal growth with heart-felt anecdotes about life, hurdles, and change. There are coffee metaphors throughout (which I love) and it was unbelievable to me to get a box of books sent to me. Who would do this?! Well, she would.)
So, this weekend, we launched a journal. We wrote, created and designed it together: Best Ever You: 52 Weeks to your Bravest, Boldest You. We did a Facebook event to launch it THIS weekend. We did giveaways, fun polls and shared photos of our work. It should have been three days of partying and there's a small slice of me that WAS celebrating for sure!
But it was mixed my with current reality, too. Cancer, COVid, exhaustion and isolation at home.
Friday night, I was not interested and Elizabeth captained the ship. Ben and I cancelled our visit with the physical therapist, I cancelled my deck-visit with a neighbour and we had the curtains drawn by 6:30pm. We were tired - and content to be locked away from the world that night.
Saturday, I felt a bit better and started to allow myself to get excited. I logged on and posted...but no videos or selfies. I created a few photos with graphics, but the world did not know I was in pajamas, on the bed across from Ben, barely functioning.
Sunday, it started to feel real. I scrolled social media, and seeing friendly names chime in and get excited for me gave me energy. I got dressed and posted a video. I am so excited about this journal. This project and partnership. I can't believe I have had the creative energy to do it...this year.
And, at the same time, I know this journal project has saved me. It's been a focus outside of cancer, outside of Ben. It's kept my mind busy, engaged and excited. It's been a light in my days- something to drive me- gently- forward.
Elizabeth has been the strong, loving, perfect partner for me during this project. Deadlines were not a word in our vocabulary and even when I would tell her, 'Let me have that to you by Tuesday'... if there were hospital visits, sleepless nights, emotional days... or just no reason at all... just days when I simply could not push forward, she understood.
This journal was done with baby steps and love. With a new friendship that feels like it has a depth of years to it. In only six months, I know we will be in each others lives forever.
I can't wait to do more projects, work on future events and, of course, go for a coffee together.
|Posted by firstname.lastname@example.org on July 11, 2020 at 10:35 PM||comments (0)|
Numbers swim in my head all the time now.
3.3 = how many mil of toradol we draw in the syringe
27 = the number of pounds I have gained
55 = the number of pounds Ben's lost
4 = the number of ports and lines in Ben's arms
152 = the number of days since we heard 'stage 4 colon cancer' for the first time
10 = the number of saline pushes we need to get through the weekend
3 = the number of beds we have