Too sick to be poisoned

Sorry for my lengthy silence. And I warn you there will probably be more gaps through the year. I haven’t forgotten, I haven’t gone away. But life is rather unkind, and I will need times to step away and live through the storms.

Today the storm feels quieter. Why? My husband was too sick for this round of chemo. This seems like it would be bad news, but as I’ve been monitoring his symptoms the last few months I have found that chemo is taking waaaaayyy too much out of him. When the symptoms were so bad he became suicidal I broke. He needed to discuss options with his doctors. The treatment was doing more harm than good. I went with him to his appointment this time and watched as he nonchalantly described the basics of his symptoms.

“Tired”

“Cold”

“In pain”

Dr took note. Anything else?

“Yes!” I yelled. “So tired we’re lucky if he can stay awake long enough to watch a movie with his children. So cold our house is heated to an extreme and he still can’t leave his numerous blankets. So much pain he can’t do simple tasks. He is stumbling. He is struggling to breath. He is loosing his eye sight. He becomes so discouraged that he begins to feel suicidal. He has NO QUALITY OF LIFE. This is not okay!”

The Dr looked at me in shock for a moment then pushed hubby for more details. Apparently unaware that he can shrug off such severe symptoms so easily when discussing them in these appointments. Turns out the symptoms have become severe enough that they did not feel it medically safe to give him chemo this week. His body needs a break. He did his other cancer treatment and they adjusted some meds. Moving forward they will be on speaker phone with me for all appointment since apparently hubby doesn’t speak up, and they don’t push for enough details.

I should be mad, stressed, scared. And I am. But today I am mostly happy that I get to see my husband again. The med adjustment and quick chemo break did the trick. He is him today. I have not seen him like this in months. Enough energy to play a board game. A slightly higher appetite. Greater mental focus. And more laughter than I’ve heard in ages. He was too sick for chemo and so for this short moment I have my husband back. I’ve missed him so much.

Please always be honest with your doctors. Describe the severity of your symptoms. You are not complaining, you are giving the necessary information. The treatment could have killed him faster than the cancer because he didn’t want to complain. I complained for him and now his body gets to heal for a couple weeks and regain some strength. No matter how short this time between rounds, for today I will dwell in the joy of having my husband again.

A welcome turn

Stepped into the same ER as we did 5 months ago. Got brought back just as quickly as before when the triage nurse saw his level of pain. Had the same ER doctor come in to the room. And as she stepped in she stopped. I’ve treated you before, haven’t I? He looked and said yes, that she was the one who found his cancer. She asked prognosis, current symptoms, and immediately put in orders for pain meds and a CT. I saw the same concern on her face as the last time when she ordered pain meds and a CT. Last time for his colon where she found multiple large masses, this time for his head where he was having the severe pain. It was all so similar, and so frightening.

I vividly remember 5 months ago, sitting in the chair next to hubby’s ER bed while they hook up his IV. Waiting in that chair while they take him for scans. And finally seeing the doctor return with results, closing the door I didn’t know the room had before closing the curtain usually used as a door and turning to us to explain what she found. That time led to a week at the hospital, a cancer diagnosis, explanation of stage 4, massive surgery, and a rollercoaster of pain and emotion that we still face.

Today I sat in that chair next to hubby’s ER bed while they hooked up his IV. Waited in that chair while the took him for scans. And then sat there anxiously staring at the door you wouldn’t know is there unless you’ve seen them use it. Desperately wishing it to remain open. I couldn’t handle going down this road again so soon. Even if I could handle it, I don’t know if he can. His mind is breaking.

Last time we sat through unspoken fear of colon cancer, this time the unspoken fear of it spreading to the brain. The doctor came back but the door remained open. Scans are clean, labs look great (considering). But she still admitted him. She wants another doctor to take a look, and beyond that just to give his body a rest. She is promising pain meds, anti nausea meds, and anti anxiety meds. And as the first batch went in his IV I slowly saw him sink into a gentle sleep. He is calm and resting, his pain managed, and when last I left his room he was keeping down what he has decided is the most delicious cranberry juice. The first thing he’s kept down in days.

It’s likely that the symptoms are just from the chemo, but it hit so hard and wasn’t letting up that we needed to get him in. What has me most concerned is the occasional moments of confusion or lapses in memory. It’s not normal for him, and started before these other symptoms. So they’re looking into it. I’m relieved that the brain scans are clean, and that he will be able to rest pain free even if just for tonight. This trip to the hospital had a much better turn out then last time. But I feel it will continue to loom over us every time we have these ups and downs. But right now I will sleep easy knowing he is safe. And tomorrow I will hopefully be able to take him home.

Depression and Cancer

I never liked to hear that depression is like a cancer of the mind. I am a mental health advocate and a firm believer that mental illness is in fact an illness, not just moods. I never corrected someone for comparing depression to cancer as I know how hard it is to describe to those who haven’t had it. But I simply did not understand the link. Cancer is cancer, depression is depression, right? Well today I got it. I suddenly understood the link.

Hubby is fighting stage 4 cancer right now. He went to the doctor this morning who said “you don’t seem yourself today, are you feeling alright?” He said no, and tried to explain but couldn’t quite put it into words. They did see that he was dehydrated so got him hooked up to some fluids. They tried to talk and help while he was at the office. But eventually he needed to go home.

Worried about why the doctor kept him late I came home early from work and found him half asleep in bed. I asked how he felt. He said he didn’t feel well, but wasn’t sure why. He described his day. That the fluids didn’t really help him feel better but it’s good he got them. That he kind of just doesn’t want to move. I asked “is it kind of like the exhaustion and aches that come from the flu but without the actual flu?” Kind of, that sounds a little similar. “Does it overwhelm your body but dull your mind?” Yeah. And I just want to sleep. I don’t want to keep getting up and facing these things. I just want to lay here. I don’t feel good. “Honey, that’s depression.”

As the husband of someone with Borderline he has heard me say so many times “I physically feel my emotions.” But I don’t think that really registered until today, when I put a name to his ache. I explained that it becomes overwhelming and takes over. That he needs to start going to therapy and get back on an antidepressant. He wasn’t quite convinced, though I could tell he was listening. So I went on.

Depression starts in the brain, your mind feels it and starts spreading it. What started as some chemicals in one part of your body is spreading to other parts and making them sick. If not treated it will not just go away. It will spread through you and overwhelm your body just as your tumors are. And that’s when it hit me. Depression is like cancer.

Depression starts in one place. It begins mild but is often ignored which allows it to grow. Untreated it will continue to grow and spread until it overwhelms your body and drastically decreases your quality of life. My husband had mild symptoms of cancer that were ignored. Untreated the cancer cells continued to grow and spread until it was discovered that he had tumors covering his colon, liver, and lungs. The cancer overwhelmed his body and drastically decreased his quality of life. But cancer kills, depression doesn’t, right? Wrong. If he doesn’t get treatment and this depression continues to grow it is possible it can take his life before the cancer has a chance to. And that scares me more than anything.

I get it now. I get the comparison. I likely still won’t use this comparison, but not because I don’t get it. As someone who has faced severe depression and not understood the comparison, I can only imagine how hard it would be for someone who has never faced depression to comprehend the link here. So I’ll stick with other variations to try to explain what depression is, and what it does. But today I gained new insight, and better understood others in the way they describe things. And for that I am glad. I’m happy to better understand them and the intelligence and logic behind their explanation. And I’m glad to have enough insight to help hubby get the treatment he needs for mind and body.

The perfect age for imagination

My youngest son loves science and history. He enjoys learning new facts and is not shy about explaining the facts he has discovered. He is also 7 years old and has a highly developed imagination. This makes “facts” far more interesting when explained by him. Here is what he has taught me so far this week:

1. “The Loch Ness monster eats stones.”

I said I had no idea, to which he explained that it’s simple to understand. “The Loch Ness monster is a modern day variation of the plesiosaur which has been discovered by paleontologists to have swallowed stones. That it is possible the stones helped digest food. So of course the Loch Ness monster swallows stones to help digestion too.”

2. “A girls lifecycle is longer than boys”

I asked if he means average lifespan. He does not. “A girl can have a baby that might grow into another girl, that would have a baby, and the cycle continues. Boys can’t do that.” I had never thought of it that way.

3. “You are a girl momma and you were broken cause you had me and brother.”

Broken? “Yeah, cause a cat that can’t have kittens anymore is fixed so before that they are broken. Momma was able to have the human version of kittens so must have been broken, and is now fixed.”

And it was devoured

I started a thing at work where if someone is having a really rough day I get them a cake pop to cheer them up. Then it became getting them a strawberry cake pop from Starbucks cause I liked the smiley face on them. That of course became “imagine it’s the face of your enemy and enjoy the destruction of their head while you eat it” because of course that’s where my mind goes. It has now caught on and other people are also cheering up coworkers by giving them faces to devour. I love my office sometimes šŸ˜ˆ

Why should I ignore their ancestors?

My husband has no information on his biological father other than the Indian tribe he was from. He never built an interest in his genetic past so didn’t much research the tribe. I however have always had a great deal of appreciation for Native American tribes and their rituals. I have even been honored with the opportunity to be a part of a religious ceremony with a local tribe in my youth. So when I married my husband I began to research his tribe.

My oldest son is a Cub Scout and part of what he’s supposed to review with me is our family’s belief system. Well, our family believes in the First Amendment. That is what we teach and practice in our household. It would be simple enough to go the traditional route of “here’s Christianity in a nutshell. Have fun at your grandparents church” but I wanted to teach my son something new. I went back to the religious practices of his tribe, for which he is one quarter, and thought that would be a good one. But then I became nervous.

He’s awkward to speak to, so may not articulate well what he learns. Someone who does not know him well may take his knowledge the wrong way. If I help him make a headdress with feathers carefully placed in the unique manner his tribe did, then it would be thought that he was being inconsiderate of tribal fashion by those who don’t know what we’re doing. If someone sees me, naturally blonde with green eyes and glow-in-the-dark-white skin, teaching my son about his tribe it will look like I’m misinforming him about Native Americans.

It is not okay that I should fear teaching my children about their ancestral past. It is ridiculous that I should be nervous to teach feather placement and bead color of a headdress. I hate that I can’t speak about Spirit Animals without someone assuming I’m making light of it when they have no idea the amount of research I’ve put into the beliefs. I need to be able to speak with my son about the religious practices of the tribe he comes from even if we don’t live anywhere near it or know who among the tribe he is related to.

I’m doing it anyway. I don’t give a shit what other people think of it, I don’t have patience for that right now. So tomorrow we’re studying the culture and I won’t allow my fear to get in the way this time.

Iā€™m wife enough for him

So hubby and I got to chatting about communes, cause that is apparently our version of causal Saturday morning chitchat šŸ¤·ā€ā™€ļø And he said we couldn’t live in one cause it will lead to a suicide pact or an FBI raid. I explained we didn’t need to go THAT far with our commune and tried to bribe him with the prospect of multiple wives. He looked horrified! I’d like to think it was because he couldn’t imagine loving any wife as much as me but let’s face facts here, I’m just too damn high-maintenance for him to imagine having multiple of me to deal with. Sometimes being high-maintenance is a good thing, it means I’m more than enough wife for my husband šŸ’

Gotta be honest… looks like a sock to me

Knitting knitting knitting “ah crap”. That is basically the story of this damn sock.

So in case you’re not following, I am knitting socks right now. Knitting is a coping tool for when my brain monster is taking control, so I’ve been doing it a lot lately. I decided to try a sock again, I’ve never successfully finished one but I was feeling hopeful. Upon finishing the ribbing I noticed a mistake in one of the rows. Looks wonky but not overly noticeable so I kept going. Then I finished everything before the heel, success! Furthest I’ve ever made it! Oh wait, my repeat pattern has a mistake a few rows back. I’m really bad at ripping back and picking up stitches so I’ll let it go.

I finished the heel flap yesterday, so proud of myself! And it was done without mistakes! Yay! Started the heel turn. Got to row 9 before I realized I’d done the whole fucking heel turn wrong.

I burst into tears. Hubby was wondering what was wrong. I held up the sock and said it was all screwed up and I should just give up. He said it looked fine and asked what was wrong with it. I pointed to the mistake in the ribbing, the one in the ankle, and then to the heel turn which would fit only if my heel slanted to the left.

Hubby looked at the sock thoughtfully, examined each part I had pointed to, then calmly looked at me and said “I gotta be honest with you. It looks like a sock to me.” šŸ˜

So I went to bed and am trying again today. I had to rip out the heel turn, but couldn’t successfully pick up the stitches in the heel flap, so had to rip back all the way to the last row before starting the heel. Now to start the damn heel again.

Round 1 goes to sock, but Round 2 shall be mine!

If we were having coffee…

If we were having coffee we’d be sitting on my couch under my favorite quilts drinking white chocolate mochas that my husband went and got us from Starbucks. Assuming you have bribe money to get him to go to Starbucks for us, it’s a bit cold today so we’ll probably need to pay him pretty good to leave the house.

If we were having coffee we’d be sitting and sipping somewhat quietly as we listen to the History Chicks. I recently stumbled on their podcast and can’t turn it off. We would listen intently until suddenly we’re joining the conversation. Cause Beckett and Susan can hear us through my iPad right? If you haven’t heard them before I highly recommend it! If you even vaguely possibly enjoyed some aspect of history, then ignore the child in your brain yelling “but I don’t want to memorize dates for a test!” and put it on. You’ll thank me.

If we were having coffee we would just be relaxing. Last week was a hard one and this week doesn’t look too promising. But today is good. It’s quiet, just the right amount of cold outside (if you don’t listen to my husband), and nothing else need exist. Just us, coffee, and podcasts.

You lose a loved one, then they die.

When I was a sophomore in high school we were expected to do a certain amount of volunteer hours for the year. So I reached out to a local nursing home and offered to help. They said just stopping by and spending time with the dementia patients would be wonderful. Upon getting there I was so impressed. The place was clean, friendly, and filled with safe activities. The staff were all wonderful. The place was clearly well run and didn’t need me, but hey I came to spend time with the patients so why not? So I sat down and started talking with a women. I introduced myself about 5 times, repeated the same answers to the same questions in small circles of dialog, and was surprised by just how comfortable I was talking to her despite my introverted tendencies. I came back the next day and started spending time with the people in the activity room when a nurse pointed out one gentleman who used to be a musician for a living. So he and I sat at the piano and I tried to remember tunes from childhood piano lessons and then muscle memory took over from his dementia eaten brain and he played something lovely for me. As another women began to sing I saw a few more swaying or dancing to the music. This became a regular thing. Bringing music, playing music, singing and dancing. It seemed to brighten their day, and I know it did mine. Staff always joined in when possible which was lovely to see. When my volunteer hours were up I kept going. For about two years I would go about once a month to put on a little “swing dance” night with the help of a couple nurses. It always seemed to go over well.

I remember the first time I sat near a family while they were visiting a loved one. As they answered the same circle of questions I did. As they had to explain who they were to someone they’ve known all their life. I could hear two things in their voices, love and grief. The person they knew was gone, she was different. They loved her and visited her and spent time with her, but it wasn’t her anymore and it broke their hearts. I saw this more times than I care to remember. See dementia doesn’t just steal short term memory, it eats away at the whole brain. The personality of the person is affected as much as anything else. The person you knew is gone almost entirely, but still there. That’s a hard way to lose someone, and a difficult way to grieve.

Twelve years ago I went to visit my grandmother. To anyone on the outside she would have seemed perfectly normal, but I saw something else. There were slight snags in short term memory that weren’t there the last time I saw her, but no more than the average person her age (or the average me at any age without coffee). Except she had always had a better memory than the average person. And what she forgot would be unusual, like how to change a basic setting on a tv she’d owned for 5 years. But it was more than that. She cooked differently. The women who has had the same cooking habits since before my dad was born had suddenly shifted them. Her intense focus on her daily hobbies wasn’t there, and she struggle to fill her day. She’d never had that problem before. I knew within an hour she was in the early stages of dementia. I called my father that night and told him what I noticed and to please take grandma to her doctor. Go with her. And then I curled up in bed and cried. I knew what would happen, I would lose her slowly, bit by bit. I would grieve for her for years while she still lived and I still saw her.

A few days ago my grandmother died. Twelve years of watching her slip away. She is now at peace. I have grieved for the last 3 years when she hit a stage of dementia that made her unrecognizable. But still I loved her, still do. So instead of the continued sorrow, it is time to celebrate her life.

She lived a long life filled with a great deal of joy. She helped keep her parents and siblings healthy through the Great Depression while still knowing how to enjoy life despite how little she had. She raised two children, a son and daughter, and had a wonderful and loving husband for many years. She had a great career that she worked hard at and loved, but somehow always knew how to balance work and life despite the tough hours. When she retired she was never bored. She spent time with her kids and grandkids, her and her husband took in foster children for a while, she kept her hobbies up. When her husband passed she spent her free time teaching sewing and knitting classes at the local community center.

She practiced what she preached more than anyone I’ve ever known. In fact I think she practiced far more than ever preached, simply living the example without the need to say a word. She lived a life of balance and stability, she took care of her health, she had fun, she practiced things she wanted to learn and taught things she already knew. I learned a lot from my grandmother, probably more than I ever realized. The things I struggle with I still try to pull from her example, and I always will. I haven’t lost her completely despite the disease that stole her mind and then body. I will pass what I can to my kids so they at least will get some of the blessings I got from her. I hope that will be enough to honor the amazing women that she was.