I need a break. I hope to be back soon.
I need a break. I hope to be back soon.
Help me if you can, I’m feeling down
And I do appreciate you bein’ round
Help me get my feet back on the ground
Won’t you please, please help me, help me
I need help.
I am at a cancer crossroads. Either I continue on as I am, in worsening pain. I’m managing though pain pills here and here. Last month I scarcely needed any of this. Or I can pursue a different path. A path where help is available. One where I’m not on my own. This would be the path of Agrace.
Agrace has loads of palliative support. I have not contacted them yet.
I need help getting up and down from a seating position.
I need help with food preparation. I need help eating.
I need help cleaning. I have a person for this.
I need help finding a in home massage therapist. Why, I’d sign-up with Agrace for this benefit alone. Right now I go for a massage twice a week.
I wobble. It takes me a few moments to stabilize when I stand. Then I bumble around a bit. My legs have buckled twice. I don’t want this when I’m on the stairs. I don’t want it anywhere.
Now I find I get winded walking in from the parking lot. I need a handicapped parking pass. The paperwork has been filled out. It will make my life easier. It will also take some getting used to that I need one. Today I requested a wheelchair for my PET exam. I was already breathing hard and I knew I had quite a distance to cover to get to the machines.
I need help writing this blog.
Accepting help is hard for me. I’ve always been on my own and fiercely independent.
I think of former students who were helpers. They loved helping others. Others loved being helped. As a child, I was one of these helpers. I was an adult too. But I don’t like being helped present day. What changed? Cancer. Cancer changes everything. Receiving help somehow it makes me feel lesser. Help right now makes me feel sick. But I need it to feel better.
When do I have time? This week is packed with medical appointments. There is no time to connect with Agrace. It will have to be a December thing.
A good friend reminded me of what Mr. Rogers said recently.
“When I was a boy and I would see scary things in the news,” Rogers said to his television neighbors, “my mother would say to me, ‘Look for the helpers. You will always find people who are helping. ‘”Fred Rogers
I have become one of those who need help. I hope I can still find ways to give it. We all need help from time to time. Another good friend says it’s time for me to accept payback for all the help I’ve given. We’ll see how it goes.
Is accepting help easy for you or not? Why or why not?
Last week I spent time in the ER.
For the past several weeks, my belly and back have hurt. Each day was worse than the day before. It was an increasing ache that left me crumpled crying on my hotel bed after my sister’s wedding reception and I had called it a night. I had grown a beer belly in a mater of days. My panties didn’t fit due to my new figure. Because of this, I couldn’t get up out of a chair or bed. I felt super beautiful.
My oncologist thought I was constipated. Separate issue. I feel I’m sharing too much.
So, I showed up to my office visit and let the tears flow as I shared I wasn’t feeling well. She finally believed I was filling up with fluid. She pulled my treatment because she thought the cancer was spreading. I disagree and don’t have enough information to make an informed decision.
She would try to schedule a PET followed by a paracentesis as soon as possible. The next morning, I checked and was shocked to see the PET was nine days away. I couldn’t wait that long. The pain was intense now! I called the triage line to see if I could someone get things moving. Was it feasible to go to the ER and get it done there? Yes, it was.
Off I went.
I was quickly roomed thanks to a childhood friend who still lived in the area and recognized my name. That was the only thing that happened quickly. The ER is slow. It is loud with undecipherable noise. Two black men lay unconscious on gurneys outside the individual rooms. I spied one patient in a room bandaged from head to toe. Kind of seemed like I was well off compared to these patients.
My ER doctor came in and scolded me with the reminder that the ER is used for emergent needs and not therapeutic needs. She’s right. I wasn’t getting my therapeutic needs met in a timely manner. I was even told by triage to go there. In my mind, my therapeutic needs had turned emergent. In the future, I will try to go through proper channels of radiology to meet my needs.
About two hours later my paracentesis was underway. A quick ultrasound was done to find the pocket that was most open to drain liquid. A needle headed with lidocaine was inserted into my lower left side abdomen. Then a larger needle with a tube was attached and the sucking started to remove the ascites build-up.
I told you it sucked. Cancer always does.
3.65 L of a yellow fluid later I was done. My stomach was flatter. I felt better. I went home after another two hour wait. Plenty tired, I rested. By evening, I was feeling glum. Why do I need to be served everything on the cancer smorgasbord? When will this happen again? What does it mean from a cancer perspective?
I wish I could find an easier way.
I’ve been at this cancer thing for quite a while now. These are the objects that tie me to cancer and treatment without question.
My port tells the story of ease and comfort for treatments. It’s used to get blood draws for labs. Premeds and any injections take this route into my body. Chemotherapies, infusions, and whatever else my body needs go in through the port. Mine has been a companion for years and started to not work. A protein flap builds up over it and prevents a blood return. Fluids still go in but a blood return is needed for it to be labeled fully functional and meet criteria for being used for treatment. Alteplase is injected and left in for an hour to eat through the block and get a blood return. In the meantime, patients raise their arms, arch their backs, turn their heads, and contort in all sorts of uncomfortable and comical positions with hopes one of these positions will position the port into a position that allows for blood return.
Last winter, my port had finally had enough and leaked. It took a couple of months to conclude this, and then a couple of tries to get one that worked effectively. All works perfectly now and I am back to a story of ease and comfort. Some still prefer a line placed in the arm and removed after every visit. They have good veins. Perhaps treatments are spread far enough apart for them. Maybe they only have a 6 month course of treatment and know they will be done at some point in the future. Not me. I’m in it for the long haul and my port is in it with me.
The waiting room tells a story of waiting. It also tells a story of worry and anxiety. Schedules get thrown off and I wait a little longer. I look around at who else waits. Not many come alone. Most have a spouse or a support person. They all have their own stories and objects that help tell them. In the waiting room, we are all in the same place waiting to go somewhere slightly different. It’s like the gate area at an airport. Some may be boarding a plane of early diagnosis. Some just flew in for a yearly check and they’ll shortly return to the rest of their lives. Then there are the frequent flyers like me who come often. It doesn’t matter how often I come, the waiting is the same. To read more about the stories of waiting rooms, click here.
Office Visit Room:
Stories of the exam room are mixed. There’s more waiting in this room. With my first oncologist, there was more calm and predictability to visits. He addressed all my concerns, comforted me when needed, and always did an exam. He taught me tons. My current oncologist works in a larger setting – a center within a hospital – and there have been times I’ve felt like I’m on a treatment assembly line. She is an expert, dedicated, and friendly. I work a lot harder to be heard and get what I need, but I do it. Since I’ve been struggling lately, she has shown more empathy. I never know exactly what I’m going to get when I’m in the room for an office visit. It’s unpredictable. I never know for sure what I’m going to get as my office room. The room itself is sterile and pretty much like all the others, devoid of personality.
The powerful and hazardous liquid in those bags tells the story of treatment. It’s the reason I’m there. Cancer. I have prayed holding the bag before infusion started. I don’t do that anymore since the nurses dress up in protective gear to hang the bag and get it dripping. I’ve sent Reiki energy to the bag during treatment. I’ve felt depressed, angry, and out of my mind while there. I’ve felt empowered because something was being done to kill cancer cells.
The treatment room is another area of mixed feelings and different stories. It has been a story of smooth sailing in the past. I’ve enjoyed visiting with nurses. It has even been, dare I say, relaxing. It felt like a natural part of the landscape. I felt I belonged. When I switched treatment centers, the story was revised. It became a story of mild to moderate discomfort. I struggled to belong. The nurses were a bit short with me if they spoke at all. I counted the seconds until I could leave and return to a world where I was more comfortable and felt like a real person. This story has been revised again over time. It feels like home. The nurses know me and we have conversations. I receive comfort while I’m there. I take naps.
Due to scheduling, I’m usually the first one in the chair in the morning. I wonder who will be using the chair after me and what cancer story they would tell. Would they cold cap? The cooling machine is in the bottom left of the photo. How are they feeling?
The MRI and PET machines tells stories of regression, stability, or progression. I’ve been fortunate to have a few scans show regression. Results now tend to be more often progression. Scans also tell the stories of claustrophobia and scanxiety. I realized during my last MRI that the claustrophobia has all but disappeared. It’s about time after nine years. You get used to things after so many years. The scanxiety was almost gone, too. Results from the MRI were already read and released by the time I got home. I prefer it this way so I have time for feelings and plan my questions. I may be upset with the results, but I don’t have to wait for them. It takes a lot off my mind.
Objects have stories. I can look around my house and am able to retell the stories of buying certain pieces of furniture, why a few decorative items are important to me, and recall stories of a few professional objects that remain. As a storyteller, I love collecting and sharing stories. Okay, not as much the cancer stories, but they need telling too.
Another friend with metastatic breast cancer has died. Liz and I followed one another on Twitter. I never met her; I never spoke to her. We had several exchanges online. I always read what she posted. Now there will be none of those things.
If you are superstitious, one superstition is bad things happen in groups of 3. Sure enough, this is the third death from the online community in the last couple of months who has died from metastatic cancer. Only one was expected. The other two were shocking. All were deeply saddening. There have been more, but I haven’t had an online relationship with them. Dying is a constant in the metastatic world.
Do I cut myself off from metastatic cancer havers so I don’t have to experience more grief? No, I would not like it one bit if that happened to me. I feel like it happens enough. Plus, I’m just not wired that way. I think very few of us are and these are our sociopaths who have little affect and no ability to feel compassion or empathy.
I’d describe the MBC community as fairly tight. There are a couple of women with MBC I know here at home. I bump into one from time to time and we have a chance to catch up with one another. I have heard of a few online cliques but haven’t experienced these myself. If a time comes when I do, I’m honestly not going to care because I am well beyond the parameters of middle school. I am liked for just being myself. I have found a core group of women who are equally as real.
The online MBC community is nothing short of amazing. Some educate and share their cancer knowledge. Others listen and offer support and empathy. They are role models. We can lean on one another. All are leaders in their own way. I consider these people friends. We can’t just put up walls when someone dies. This is a time to be vulnerable and open ourselves to others who are also grieving.
• At least she is not in pain. Do not use any “at least” comments. At the moment, there is no bright side.
• Heaven needed one more angel. Honestly, I’ll puke on anyone who says this to me.
• Someday, you’ll move forward. Today isn’t that day so keep your mouth shut.
• Everything happens for a reason. This isn’t comforting.
• Everyone dies. What is the point here?
• I’m so sorry for your loss. I’m sorry this has happened. Both of these express sorrow.
• Sharing a memory brings a specific story of a lost loved one that the bereaved may not have heard.
• Offer the person space to talk.
• Ask if there’s anything they need.
• Sometimes actions are better than words. Hugs are their own language.
We are capable of feeling great grief and great love. All of us fall somewhere on the spectrum of grief and love. I feel deeply so I experience both of these intensely. I will experience grief in whatever fashion it presents itself. It’s the trade-off for experiencing moments of joy and love, laughter and smiles, happiness and delight. I have had enough grief for a while. Bring on a little happiness.
To all those grieving, you are not alone.
“What is a grief journal? It’s a journal where you’re free to write exactly what you’re feeling. You can share memories, feelings, anger, or just daily ramblings. As long as you’re writing, you’re getting those emotions on the page.”Sam Tetrault
Ultimately, writing is healing. Deep within writing about grief is hope. Grief becomes healing and heling transforms into hope. I’ve found it is a long process.
I think everyone personalizes how they use a grief journal because grief is so personal. It isn’t supposed to be a happy place. I think almost every time I wrote in mine I cried. At some point, the tears lessened. I could read what I wrote and reflect on it without tears.
A working definition isn’t too important to me. My sister and I took a grief class the summer after our mom died the previous spring. I think the grief journal was born there. It appeals to my writing side.
These are snippets from my grief journal. If they don’t fit your definition, you do you.
Many of my entries at the beginning look the same.
Dear Sweet Mom,
I love you and miss you. It’s still too hard for me to put all my feelings down on paper.
Love, Kristie xoxo
Gradually, the notes took on more of a conversational tone. It was like I was writing a letter to Mom. Grief was still present, but it was slowly being replaced by normal life and small doses of hope. If I couldn’t speak to her, this was the next best thing. Somehow I expected the words to lift off the page and swirl the night stars until they reached he in heaven.
Dear Sweet Mom,
I brought in a few of the tomatoes the other day and ate the first one as part of a caprese salad. It tasted good and I so wish you could have had some. Thank you for getting me going on tomatoes and teaching me all about them.
I made rhubarb crunch today too. Very good. I ate a piece for you.
Love, Kristie xoxo
Dear Sweet Mom,
I’m feeling sad and empty tonight. Just keep picturing you at Oak Park this time last year, knowing how hard things were getting for you, and how I was losing you more each day. The next month is going to be rough on both of us. I’m remembering the sad and bad times a lot. I was to replace those images and memories with all the happy ones, but I’m not very successful. Maybe I’ll try to think of some good Door County memories.
Love, Kristie xoxo
Dear Sweet Mom,
It’s been a year. I just can’t believe it and I don’t know what it all means. It doesn’t make me any less sad or you any less gone. All it means is al the firsts for the first year are over.
Last night I dreamed you called me on the phone. After I picked up and said, “Hello,” you said, “Kristie, it’s Mom.” Your voice was clear as a bell. It startled me out of sleep. Unfortunately, that dream was over and I couldn’t get back to sleep. What does it mean? I will keep looking for signs.
The last time I wrote in it was 7/28/16. Entries became father and farther apart. Focusing on the grief wasn’t what I needed. I had hope that life was returning to something more normal.
The intersection of grief and hope is hard to explain. Grief doesn’t have to disappear. We all have those moments where it shows up unexpectedly. Hope still floats around this atmosphere waiting for the grief to settle so you can reclaim a bit of that needed hope.
I believe we are not given grief without a way to work with it. Hope is how we work with some of the grief we feel. Not all of it. Sometimes the only way to get through something is to go through it and experience it, tears and fears and all. Other times those pieces of hope are enough to cling to in tough moments.
Poetry is another way to combine grief and hope. This poem is dedicated to my friend Lori Burwell who transitioned suddenly on October 7, 2021.
Through grief comes hope.
Through the tears,
Through our fears,
Through breaking hearts
That are tearing us apart
And through the pain.
We know we’ll never be the same.
We try to cope.
We hope our loved one still sees us
And knows what we are doing.
We hope they are at peace.
We hope our grief will cease.
We hope heaven is real.
It’s strange that grief and hope
Share a bond.
Grief comes first.
It lasts and it hurts
Like a bruise that never heals.
Where is the hope?
Eventually, the black and blue heals.
Eventually, we begin to feel
And hope replaces grief.
This is my belief.
I hold space for you.
I’m holding space for both of us.
Our memories gather round that hope.
We walk through our days as we cope.
We want to touch it
And feel it in our hearts.
If we’re lucky we do.
There will always be grief
That returns without warning.
There also will always be
A song of hope
Just waiting to fill our hearts.
So much despair
She was not done.
It’s so unfair.
From it we hide and run.
Grief still finds us.
What can we do?
The sun still shines.
We advocate, we donate, we hope.
We soothe our souls with
Thoughts of the Divine.
Lori lives with the Divine.
Rest without cancer and pain.
Rest in happiness.
Rest in love my friend
Until we meet again.
What are your thoughts about grief?