Kris Fuller, CancerWifeNinja sharing my journey... as my husband battles Stage 4 Colon Cancer.
|Posted by firstname.lastname@example.org on June 24, 2020 at 6:25 PM||comments (0)|
We drive to Salmon Arm for chemo, unsure if it is still happening. I drop him off and go to buy the washing machine (we finally picked one!) As I'm loading up I get the text, 'Chemo is on. See you in 4 hours.'
I drive home and get the washer out of my car. Inch by painful inch, I wiggle the heavy appliance box from my car to my front door. That's all I can muster. I see a neighbour outside and beckon him over. He helps me get it into the house and I slide it into the corner. Part 1 is done. The new washer is home.
I tidy the laundry corner and start connecting the dots for hook up and take away. We have friends who can hook up, set in our new washer and take away the old. I'm texting and coordinating like crazy to get this done. In no time at all, Ben has text me to pick him up.
THIS chemo round is different. Besides his 4 hour IV at the hospital, he now has a continual drip in a bottle. It's on a strap like a bicycle-shoulder-bag and it is permanently inserted into his PICC line. The bottle runs it's course in 2 days (so, permanent for 2 days... but the point is, it doesn't unhook in this time). Then we return to the hospital for removal and port clean.
For the first time ever on a chemo day, Ben seems to have energy when we get home. He is determined to complete the washing maching task himself. (ah, with my help, of course). We struggle and strain to remove the old one. I clean the floors and scrub the grout- hopefully we don't need to move our laundry for another four years!
It's a long, slow task. Package removal is a beast. The cardboard is thick and sturdy with corner supports. We struggle even with box-cutters. We stop for pain meds in the middle of it. It takes a lot of baby steps for the hook up. We inch the maching forward, painfully, slowly, little by little. We hook up taps, drains, power. A job that would have taken Ben less now an hour has now taken both of us about three.
The chemo bottle is in the way, the pain hurts, the wife is only partially effective in her role as helper. But we do it. It knocks us both out, but we sit in contentment as the first load of towels is started in our new washing machine.
|Posted by email@example.com on June 23, 2020 at 6:55 PM||comments (0)|
Yahoo! The electric bed has arrived.
Ben is grumpy about it. Save the packaging for a return, he says. I set up quietly around him. All I want is for him to try it. To upgrade from the recliner to a bed again.
"Remember that we were going to buy a new mattress for our Queen bed for ourselves?" I comment, "Well, we never got around to it. But I really want you to have the best rest. Good night sleeps. So THIS is that money. And you know what I am really good at? Buying beds."
I jenga the couch, Day Bed and electric bed into a u-shaped formation in our living room. It looks like a perfect zone for 'don't touch the floor' with kids. The sleep choices in this tiny room are endless now.
|Posted by firstname.lastname@example.org on June 23, 2020 at 10:40 AM||comments (0)|
Argh. 11pm. A shortage.
The pain meds going in Ben's IV line need saline to push them in and flow. We use 2 syringes of saline each push and we only have one left. We need two at 11pm and we will need two at 7am. BOTH times are terrible for running out of something!
Will we need the hospital? Ben is determined not to. We push his meds with only half a syringe- a quarter of what we need- saving the other half for the morning. The meds hit slowly. Many times we are tempted to use the rest....which is still not enough but Ben says wait...wait.. it might make it into my blood stream...wait...
We are running on empty this night... but Ben is so weary and I am beat. We both want this minimization to work... and so we wait...
A while later, his pain subsides and we think we can make the night. We do. He makes the morning work too. At 7:45am we head to Salmon Arm for blood work and much-needed saline. Both pharmacies we call don't have any in stock. We call our community care center. They find our file instantly. Not only do they find us saline, they also will deliver it this afternoon for us.
My jaw hits the floor. I am pleasantly suprised to see action. Immediate action. I didn't know what to expect but if this is a shade of what's to come, I am so glad we are in the home care program now. We head home with relief. I feel peace. I feel looked after.
|Posted by email@example.com on June 22, 2020 at 10:40 PM||comments (0)|
Lizzie has finished Grade 7. Her school did a day for the Grade 7s but very low key. No parents, no camping trip. Just.. different. Lisa and I arranged for a BBQ at our house for this day instead. I am thrilled. We get Dairy Queen ice cream cake, balloons and teal plates. I make burgers and put on a nice top. It has been a while since I wore anything that cannot be described as 'work clothes', 'pajamas' or 'leisure wear'.
I print signs for my niece - and tape to our deck. Lizzie = awesome. Congrats on 7 years! Highschool! When they arrive, I am so excited. I play Megan Trainer 'I'd Wanna Be Me, Too.' and dedicate a dance to my niece.
It's showboating (my specialty) and it's a delight for me and the family. I dance a few lines of the song, then we serve cake. Yes! Backwards! Why not? YOLO. (when you're cool, you're cool).
We BBQ and load the Wrights up with more plants. They take pumpkins and watermelons and head home. It's perfect. The short visit, celebration and BBQ was just perfect.
And now the Wrights and Fullers are hugging. It's the best good-bye I've ever had.
Note: If you are not cool, YOLO is an acrynym for You Only Live Once. (you're welcome)
|Posted by firstname.lastname@example.org on June 22, 2020 at 10:35 PM||comments (0)|
After Home Care leaves us, Ben circles over to me. I think you need a hug, he says.
I nod, and take the hug and while it does make me feel better... it also jars me to feel his bony frame. Hurts my heart. Gone is the strong, beefy man who made me feel tiny, protected and bear-huggy safe.
The bony hug is still comforting but it's a stark contrast to my healthy husband.
I ask if his bony-body hurts and he tells me no.
The pain is all on the inside.
|Posted by email@example.com on June 22, 2020 at 6:20 PM||comments (0)|
Home Care visit today. I am grateful that they called me multiple times to set something up. I know I have missed a lot of calls lately. Sometimes I just can't face talking on the phone.
We showed the tour of the house, then sat on the deck. We talked about where we are and how it is for Ben. Ben doesn't like being in pain. He doesn't like being groggy, either. The team talked about pain, comfort and drugs.
I shared that my main concern was getting changes made with medications and routines. It feels like we hit CRISIS (in the ER), then we share to Dr. Family for changes in meds or routines. It feels very knee-jerk and upsetting. I feel we are the pivotal point and this can't quite be right... can it? It feels like our systems don't talk to each other and we are stuck in the middle. I choke up as I share this with the team. It surprises me. I thought I could share our facts pretty easily now. Without tears....
They offer some ideas for changes and tell us they can be the advocate between us and doctors when/if needed. They ask about our drug coverage and when I start to explain the MSP issues, they recognize us. Well, not us.. but our file. 'We have been fighting for you already. It's been so heartbreaking for us to battle without success. But we keep fighting on your behalf.'
I'm somewhere between grateful and embarassed. I am so tired of this issue. I cannot wait for July 1st. I cannot wait for full coverage to return. We are assured that all of our chemo bills will be covered at that point.
It's been a while since I spent time thinking about our medical bills. I've been ignoring the yellow SECOND NOTICES in our mail. They are a heavy weight that I just don't want to sort out right now. Eventually, I will have to.. but not today...
I feel a bit better after their visit. But once they have left, I realize I have no idea when I will see them next. I don't have a contact number or instructions on how to connect with... well, anyone. It feels confusing all over again.
|Posted by firstname.lastname@example.org on June 22, 2020 at 5:05 PM||comments (0)|
Argh. It's a small house storm... and all the things Ben used to fix and maintain are now in my lap too.
Air-conditioning was leaking. Serviced Friday and I had to help with the heavy lifting. It's fixed but it was four hours of interruption and annoyance. But needed as we are about to hit the heat of our summer.
Washing machine - started with a slow leak and now is flooding. (In the past, Ben had already taken apart it's motor, agitater dogs, spinning things and umpteen other things. It's on its last legs). I've got a call in for a repair but trying to book around our busy week of Oncology appointments has been a hassle for me. I keep missing calls.
5th Wheel- it was our project - last summer. We bought a scruffy, falling apart trailer and wanted to fix it up for guests. But now, we have to prioritize differently. We have too many plants and house projects, so the 5th Wheel can go. The job of posting, selling, transferring is on me.
Finish trim - I've ordered it! Now to stain. Small steps... but this one - painting- I CAN DO!
I've found a 'fix-it' guy through my network of helpers. Well, actually, a few. Slow and steady, I can do it. It just takes more time and effort than I have some days. As I start to take inventory of our house, the shift from Ben to me, I realise how many things he truly did look after, fix and maintain. It's stuff nobody likes, really.
But for me, even less so now.. because it's a reminder of Ben's illness. His weak body. His difficulty with working. I wish broken things would take a BREAK for this year and have my house run smoothly THIS year... including Ben.
|Posted by email@example.com on June 21, 2020 at 9:10 PM||comments (0)|
I'm celebrating my new green front door. I stripped it last summer but never finished. I had the paint and wanted to get it done this spring. My aunt was here and she did it for me. It looks amazing and it makes me smile every. single. day. now.
Let others help you. They want to do it. We love to BE the helpers but it's important to receive too. I'm learning.
Since Feb 26 - the day Ben was diagnosed with cancer--It's been a journey of tears, accepting help. I flip- flop between not feeling worthy, and feeling bad for needing help. Thinking I could or should be able to do it all myself. Not giving myself enough grace and space to be overwhelmed....
Then I shift to love and gratitude. I feel the support in actions, words, food, messages, tasks. So many things that I am truly grateful for. Small things mean the world.
I think of the burdens and strengths I've seen when others in my life have gone through something. How much I want to help... and how much I admire their strength and courage.
Both sides of this coin have brought me tears. And today, this green door is the small thing that makes me feel loved and lifted. Thank you for the love and support.
Give freely. I believe this... Give what you can, when you can. Time, love, talents.
Accept lovingly. I never thought THIS would be so hard. BUT it is important and it matters. I am learning. You are worth it. For no reason, no explanation, just because you're here and you're you.
|Posted by firstname.lastname@example.org on June 21, 2020 at 5:20 PM||comments (0)|
I've ordered an electric bed. After my discussions with 10,000 friends, I can see so many (especially the tall ones!) say they wish they would have had an electric bed sooner. Sleeping in a recliner was amazing...for a while.. but nothing compared once they made the switch.
I search online, read reviews, weigh costs and by 5pm, I have ordered one. Ben tells me not to 'waste money' on these things. But, for me, it's not a waste at all! He resisted when we bought the Day Bed and has used it every night since it arrived. Every. Single. Night.
And now, Ninja-Anticipater (that's me) sees our next hurdle. BOTH of his arms are under IV. His stomach and back hurt. The ease of a lift- for both his feet (oh yea, swollen ankles are back with a vengeance) and his upper body will provide options and relief. And hopefully, comfort and rest.
A friend suggested that we rent an electric bed and I did look into it. But for me, the long haul is our goal. I need him to sleep and be comfortable for years to come. And he deserves a bed that fits his height and works for his body. Properly. The bed is on the way.
AND great news, my sister-in-law has gifted us a U-shaped-body pillow. Once it arrives, I hope it also provides the extra support he needs. He never complains and doesn't want any frivilous items, but surely a wife can provide her husband these small comforts. Anyways, I think so.
|Posted by email@example.com on June 21, 2020 at 10:15 AM||comments (0)|
It was very stressful for me to arrange a first meeting with home care.
I felt Ben would not want strangers in our house, but I also want to set up visitors now, while his health is good (ish) and make it a bit more normal now. So that later, well... I don't want to talk about later. But then, who would I be... if I wasn't anticipating, planning and logical.. mixed in with all the emotional parts... I plan. That's what I do.
And these these plans are the hardest I've ever had to navigate. I push forward. I do want to anticipate what we might need and make plans. I dislike being in a state of crisis, being on the URGENT! NOW! ACTION! side of things. So, I plan...
I felt unsure of what we need. If anything. Am I foolish for booking? The ER team suggested to Ben last week- you should look into palliative care. And my cousin and sister suggested it too. But it still feels so foreign and uncertain to me. And in this uncertainty, my confidence is gone. I don't know who to call or what to say. It's one of the layers that suddenly feels huge and un-do-able.
|Posted by firstname.lastname@example.org on June 20, 2020 at 3:55 AM||comments (0)|
Like, listen here, body. Can you just stop with the additional crap? My period has started and my cramps are out of control. The pain has me curled up and I'm so mad to have to deal with them on top of it all. I'm 43, the kids boat has sailed, can someone just push the EMERGENCY STOP button on this machine? Just go away.
|Posted by email@example.com on June 20, 2020 at 3:55 AM||comments (0)|
There is not one side of his body that he can lie on comfortably. I ask my 10,000 friends about this. They suggest a recliner or adjustable bed. Some say a body pillow has helped them. I buy a body pillow online and ask Lisa if we can borrow their recliner.
|Posted by firstname.lastname@example.org on June 19, 2020 at 9:15 AM||comments (0)|
My family has been wonderful and our yard has another round of care. It warms my heart again and brings me strength.
AND this week, I really needed it. We were in the hospital 3 times in 5 days and the new drug routines have fallen into our laps with a swiftness that hasn't allowed me to catch my breath.
Working with both arms for liquid IV has been pretty good (because we are both strong and we do what we need to do!) but I've felt like a hamster in a wheel that can't catch a breath. IV's of different strengths, some arriving in glass ampules, some arriving with rubber tops. The needles for drawing out medicine are different for each one as well. Overnight, I feel like a mini-pharmacy with all our piles of equipment. And I haven't had time to make a chart. To get organized. To have places for things and know fully what we are doing. It's bing, bang, boom.. survival mode of meds, water, rest, and sometimes eating.
My cousin Beth has stopped by on her way home from the island and her timing is once again perfect. Her being here helped me get organized into medical charts and feel more secure about what we are doing. And what we need to do better. And now I feel like we have an effective chart and more information on how to effectively track Ben's pain and meds. And she spent time with Ben talking about his reality and how it was all going. Her support and perspectives were so welcome.
I am ever-grateful for a sister with Home Care backgrounds. I have felt overwhelmed with gratitude and tears of joy have replaced the tears of trial. Angela figured out our home care connections and got the wheels in motion for that support as well.
|Posted by email@example.com on June 19, 2020 at 2:05 AM||comments (0)|
My sister and I have stayed up to hottub together each night after Auntie and Ben go to bed. It's been so peaceful and relaxing. Ben and I haven't been using it much lately. (It's up and down as to whether or not he likes it, and I've been too tired to go alone.)
So, the sisters dip together. And once again, I am filled with love for this girl! I still can't believe she was able to get away for 3 days just for me. As a mother with four boys under age 8, it was no small feat. Her husband and in-laws are the kindest family around and I love them all for their rallying support. For making it happen.
|Posted by firstname.lastname@example.org on June 19, 2020 at 1:30 AM||comments (0)|
Pre-draw has saved us. One of the tips from cousin Beth was that we can easily pre-draw the next few syringes of our meds and keep in a dark cupboard. One of the most tiring events has been administering meds at 2 or 3 in the morning. We are both exhausted, the middle of the night is never easy. But if he wakes up due to pain, I have to help him. Once or twice he has accomplished it on his own, but it's a task.
Having a syringe ready means we can just attach and push. No needles, breaking ampules, drawing, tapping out air, measuring. Such a huge impact. So, now we plan to predraw before we go to bed. Enough for the night and morning doses. It's a game-changer.
And another thing that I haven't had time to feel yet around this... is anger. Both my sister and my cousin have been dismayed, frustrated and even angry that we were 'cut loose' with so much to take on and very little education around it.
I mean, I was shown how to fill a syringe with a needle, sterlize and attach to Ben and inject at an ER hospital visit at 2am in the morning. Once. And there has been no follow up. It didn't dawn on me at all. My energy and thoughts have ALL been on the task at hand. The job. Not the poor training and alone-ness of it. Their indignation has been partnered with pride- they are proud of us... proud of me... for handling so much, so well.
|Posted by email@example.com on June 18, 2020 at 9:20 PM||comments (0)|
Ben has been padding in paper towel on his arms. To prevent his tubes from catching while he sleeps and perhaps add a little cushioning. BOTH arms are now compromised with IV sites that he must navigate while he sleeps.
I had a brilliant idea- why don't I cut off the legs of some leggings and make arm sleeves? Swiftly denied. But on night #2, I just did it. I cut one leg off and modelled on my arm. He nodded and we transferred it to him. (Delighted.)
I only caught him in time for one arm so in the morning he has papertowel and pink vines decorating his arms. I ask how the vines were? Good. I cut the other one and now the pair awaits us as part of our new evening routine.
|Posted by firstname.lastname@example.org on June 18, 2020 at 6:45 PM||comments (0)|
I have had those ugly cries with my cousin. With my auntie. With my sister. With Ben. In between the love, support and help, the emotion has ripped out of me. I've cried, slammed doors, thrown myself on top of my bed with frustration. I've allowed myself to explode in these safe arms. (I actually even threw a ladder outside, but that was more of a temper tantrum... nevertheless.. it ALL seems to be coming out at the seams this week).
You can tell me to fuck off and I would not even care, both my sister and my cousin tell me- as I hiccup through the painful explanation of how I feel. I am crying, can't catch my breath. I wipe my red eyes and stammer between gasping sobs, "Well, I don't ...(sob)...need to ... (gasp)....do that ...but I might.... (sob).... need...a few... 'It's... not.... fucking.... fairs'....(SOBS between each word)..... today."
Good, they say. That is okay. It isn't fair. They hug me.
And you're allowed to be mad. This is all so much for you. And we are right here. With you. You are never alone. They hold me and rub my back as I cry.
My shirt has gathered two wet pools on my collarbone - just below my jaw- I can't stop the tears from raining down my cheeks and dripping off my face.
|Posted by email@example.com on June 18, 2020 at 3:35 AM||comments (0)|
I drop Ben off at 10am for his chemo IV at the hospital.
As soon as I am home, he texts me. Come back.
I'm dismayed. It's a four hour drip. What went wrong? His body is not ready for this round, so we will wait a week for more recovery and strength. The doctors are concerned about his bowels (and all their movements!)
It's a swarm of mixed feelings. What's best? Chemo pain or cancer pain. Both are hard on him and there is no real 'break' from pain. We head home and rest while family continues in our yard.
|Posted by firstname.lastname@example.org on June 16, 2020 at 9:00 PM||comments (0)|
My sister arrived with my Auntie! Both ladies decided in one day to come visit us. They have trekked across the Rockies to support me. As soon as they arrived, they take a tour of our yard and start weeding, mowing, moving things. Both farm girls can see what needs to be done - at least a bunch of easy little things- and they are excited to help us out.
We visit outside and Ben's in and out too. He does a bit more work and wants to be actively helping. Well, what he would really like to be actively doing it all! All day! Like usual! But we are learning.. bite sized pieces.
Tomorrow is chemo day and it feels too soon. I feel robbed of him getting a 'good week' this round.
|Posted by email@example.com on June 16, 2020 at 5:55 PM||comments (0)|
IV Meds are getting better. We are figuring out the angles.
It's extra hard for me, wanting to be perfect. Immediately.
And lately muscle rub has been helping his back, too. It's from a Health Market and has THC. I'm glad it's working. He's been on-again, off-again with it. But for now, he likes it.
Together, the IV and muscle rubs gave Ben a couple hours today. In the garden, he's been raking and cleaning. And transplanting sunflowers. 2 hours looks great to me (especially after our past few days)!