One day, I will write about something mundane, like budgeting but today is not that day.
Good news: We are out of the hospital and have been for a week! It is so good to have him home and he has settled in as if he hasn’t spent an entire month in the hospital getting blood transfusions every day.
Bad news: He still needs those blood transfusions.
Last week he went through a bone marrow biopsy so the hematologists could find out what the cause of his low blood counts were. And it turns out, he has what is called aplastic anemia. Essentially, his bone marrow is damaged and has stopped producing red blood cells.
I can’t get too into this since our appointment with the hematology specialist isn’t until Wednesday. What we do know is that his immune system keeps attacking the cells. There is no current explanation why this is happening but the theories range from bad blood given when he was admitted to the ER, to a bad reaction to his cancer treatment, to COVID.
Worse news: He can’t have any more cancer treatment until they figure this out.
To be clear, this isn’t a spread of his neuroendocrine cancer. This is a whole separate disease on TOP of the cancer.
When it rains…
It’s been two weeks since I last wrote about anything. I wish it was because I was busy getting this guy comfortable at home. Unfortunately, he is still in the hospital. I might as well be commuting again with the amount of money I’m spending going back and forth to visit.
I’m not complaining though! I am beyond grateful that I get to see him.
The doctors have now decided that he has hemolytic anemia. A disorder in which red blood cells are destroyed faster than they can be made by the body’s bone marrow.
They have started him on Rituximab, once a week. We had hoped to see quick improvements but 2 weeks later and he’s still getting blood transfusions.
We are nearing the end of our rope. He does not want to be there anymore and I want the doctors to figure out what is wrong. Sometimes those two things bump up against each other. But I remind myself that it’s his body and he has the final say about what happens to it.
And that is the scariest thing I’ve ever written in my life.
I spend as much time as I can with him because I know one of the main issues is the boredom that comes with being in the hospital. But I’ve learned from past mistakes. I will not burn the candle from both ends this time. I will take breaks and take some time for myself. I can’t afford to get sick during a pandemic.
For now, I try to keep his spirits up and continue to bring him contraband like Popeye’s. And I hope for the best. Always for the best.
We finally had the conversation that I’ve been dreading since we first learned that my partner had cancer. The, “if you fall into a coma, what do you want me to do?” conversation.
If you become unconscious, do you want them to perform CPR?
If you become unconscious and stop breathing, do you want them to intubate?
Asking those questions meant admitting that he might not grow old with me. That this invisible enemy might win, not someday in the distant future but sooner. It meant that I would maybe have to make a decision for him before I knew him so well that I didn’t even have to ask.
He isn’t doing well and we received some very bad news today. After speaking with his oncologist, we realized it was time to start putting a few things in order.
I am just heartbroken and all I want is to know that he is still in this world. Alive and well and able to tell me he loves me as often as I need to hear it.
An hour ago I was excited to come on here and write about how much better my boyfriend was doing. He was given solids for breakfast, scrambled eggs and toast. He was allowed to walk around for a little bit, from the window to his hospital room wall and then up and down a flight of stairs.
He was feeling a little better. Perhaps he could come home soon.
That was an hour ago.
An hour ago, a doctor arrived and told us that a nurse was concerned because my boyfriend’s urine was very red. They worried he was bleeding again. They needed to run some more tests.
An hour ago his lab work came back and his platelets were dangerously low, 2k versus the normal 150k count. Something in his blood is attacking his red blood cells and his platelets.
The standing theory is that he’s having negative side effects to his immunotherapy treatments and that’s cause of his liver injuries. The treatments that are supposed to keep his cancer in check are making him worse.
There are so many scenarios running through my head about all the things that could go wrong while I’m stuck in this house and unable to even touch him. Every emotion feels so fleeting and fragile right now. And the small bits of happiness that we manage to create for each other don’t seem to last very long.
They tell us to try and keep our spirits up. They can all go kick rocks.
Being unable to be with my zebra while he is in the hospital has been difficult. I am very much a caregiver, always have been. When he was first diagnosed and admitted into the hospital two years ago, I spent every available moment by his side. It was exhausting and stressful and my body and mind definitely took a hit. But it was how I felt I was contributing to him getting healthy.
Remember, we’d been together for less than a year and I learned some things about him during those months of hospital and rehab that hurt me deeply. We were still learning to trust each other.
And by we, I mean him.
I am very much a feet first person. I’d chosen to give this relationship thing a shot and I was all in. I also had no responsibilities and ties from any previous relationships. Looking back, I definitely came in with less baggage.
There was only ever one time I really questioned if this was what I wanted and it had nothing to do with his cancer and everything to do with him.
I think it’s important to make that distinction. I never once questioned whether or not I loved him enough to get through this. Relationship issues don’t stop just because one of you is sick. I’m just lucky that I got a few months to be with him without the cancer. To see what we are like when there are no worries, when every word or touch brings with it a new side to someone you are thinking forever about. Nine months isn’t a long time to get to know someone but it was enough to know I wanted to be there now.
We’ve been lucky. His cancer responded well to treatment the second time around – but I’m getting ahead of myself…
I started this post because I’m lying in bed, alone and lonely and missing my partner fiercely. Feeling useless and helpless because I can’t be with him.
Goodnight babe. I love you more than pizza and books.
High grade, poorly differentiated neuroendocrine carcinoma with unknown primary origin. According to cancer.net:
A neuroendocrine tumor (NET) begins in the specialized cells of the body’s neuroendocrine system. These cells have traits of both hormone-producing endocrine cells and nerve cells. They are found throughout the body’s organs and help control many of the body’s functions. Hormones are chemical substances that are carried through the bloodstream to have a specific effect on the activity of other organs or cells in the body. All NETs are considered malignant tumors. Most NETs take years to develop and grow slowly. However, some NETs can be fast-growing.https://www.cancer.net/cancer-types/neuroendocrine-tumors/introduction
The most common places your will find NETs is in the lungs and the GI tract. In rarer cases, they will develop in the pancreas, i.e. Steve Jobs and Aretha Franklin.
There are 3 “grades” for NETs, which is the equivalent of stages for other forms of cancer:
- low grade – slow growing
- intermediate grade – in the middle
- high grade – aggressive growth
And differentiation. Whether the cells look healthy – well differentiated or not – poorly differentiated. This is important because cells that are healthy looking (look like actual cells) can be identified and tracked to the part of the body they originally came from.
Now let’s look back at the diagnosis. High grade, poorly differentiated neuroendocrine carcinoma with unknown primary origin.
My zebra isn’t common. His cancer is aggressive and we have no clue where in his body it started. It makes this thing hard to fight.
But he hasn’t given up yet and I love him more everyday because of it.
It’s 10pm here and I’ve spent all afternoon thinking of things I want to write about. It’s been 2 years. That’s how much is pent up inside of me. Two years worth of thoughts and feelings and emotions.
I met a man who was kind and funny and sweet but was also still figuring shit out, carrying a lot of baggage, and not at all who I thought I was looking for. But he made me laugh and he listened and I started to fall in love with him.
But six months in and I was… concerned. I was trying to get my life together and it didn’t seem like he was the right fit. He was messy, both with his things but also in his life. He came with two kids and you know, their mother. I didn’t think it was going to work long term.
I spoke to him about my misgivings. How I wanted more from life and I didn’t think he was ready or willing to meet me half way. I was looking for a way out. And he knew that. He was guarded, told me to do what I thought was best.
The most frustrating line from a person who you want to be with!
Then the bottom fell out from under him. That summer I had to watch someone I loved struggle without a way to really help. I thought, “It can’t really get much worse than this.”
I was wrong.
He started complaining about pain. Went to see several doctors, got a bunch of tests, even more useless treatments. And then one day, he received a call that said, “Come to the emergency room tomorrow morning. Ask for me and I’ll come get you right away.”
That was September 2018. Nine months into our relationship – a relationship that I wasn’t even sure I still wanted to be in. I didn’t know what it was or how bad it was going to get – God, I had NO CLUE. But I went with him and as I sat there, listening to the doctors and watching him receive the news about a mass in his spine, I just kept thinking…
Thank God you found me when you did. This is where I’m supposed to be.
It’s hard to start in the middle, although some professionals will tell you to always start in the middle of a story. Only, this isn’t a story. It’s my life. And I flip flop on whether I chose it or just found myself here.
He’s in the hospital again. Second time in as many weeks. He has neuroendocrine carcinoma, high grade, poorly differentiated. Sounded like gibberish to me too when I first heard it. I still don’t know how to describe it to people. Mostly I just list the issues:
- Tumors in his spine, lung and pancreas
- Immunotherapy treatments every 3 weeks
- Radiation treatment
Those last three are mostly mine. It’s hard being someone’s caregiver. And lonely. Because no two people diagnosed with this cancer is the same. It doesn’t have just one spot on the body that it clings to, it shows up differently for everyone. And it’s often misdiagnosed.
And now he’s in the hospital again. And I’m left feeling glad because maybe they can help him and scared because God, who wants their loved ones to be hospitalized?