Final blog post, maybe? Final wishes addition.

        

             This post was written in January with instructions for the husband to release it in the event I begin to decline to a point I can no longer post it myself. Although it is a bit all over the place, it is to serve as a way to explain some of my final wishes. This is not to be mean or be disrespectful to anyone’s views or personal beliefs, but to explain mine.  It is very important to understand I will be cremated most Ricky tick after I die. I don’t want euphemisms like she passed away or moved on to better place or moved up to the farm, I’m not a dog. I do not want pieces of my ashes split up and distributed to be kept in urns, lockets or bottles like a souvenir.

Ok so when I die, leave the husband in peace. I’m not trying to be mean and cold here but please give him his space. Everyone has their way of dealing with loss, let him deal with my death in his own way as he needs to. Be prepared for a period of silence to come after he finishes passing along the news of my death. He plans to shut off his phone and lock the door for at least a week so don’t bother to call or knock on the door, he will not answer. The house is stocked with food and everything he needs so there is no need to offer to cook or clean for him. Trust me, he will be ok.

Also very important, there will be no formal memorial service, no clergy, etc because those tend towards the religious and I am not a believer. Please don't worry about my soul, I do not believe that the soul is a thing that exists other than as in shorthand I use to refer to the husband as my soulmate. If you choose to gather amongst yourselves for something, please take it as an opportunity to celebrate my life and not to memorialize it.  There should be no talk of sadness over a life cut short or how unfair it is that this happened to me. I used the time I had to do the things I wanted, took risks, made mistakes, learned from them and moved on.  I do not have regrets about anything and am peace with this.

        As I said before, I will be cremated and my ashes placed quickly after I die. No compromises on that. No casket or coffin! No wake or viewing! I will not be buried in the ground. I want to just be ashes and that’s it. The husband knows when the end comes, I want the ashes to lay in peace and not be disturbed. So he will take them to where I want them to be placed shortly after the cremation. I do not want people to visit where that is so please do not ask where that is because per my wishes, he will not tell you. And per my wishes, once placed even he will never visit them.

    I want all of you to know that I love you, that it's been an extraordinary life with no regrets. I had my adventures, I completed almost the entirety of my bucket list. The only thing I wish is that I could have made it back to Italy again. 

Y’all I have said it before, cancer sucks! When I die I don’t want to be surrounded by an audience. Death is not a spectator sport.  Also, I did confirm with my Hospice nurse that shortly before you die there is a chance you can void your bowels. I’m not interested in having an audience to watch me poop the bed. You also void your bladder. I don’t need a cheering squad to watch me pee myself either.  So yeah it will be unpleasant, but I am ok with dying quietly in my sleep, but want to die in peace and with dignity. There will be no compromises or exceptions to this rule. So please so not ask to be here. Per my wishes, when things start heading that way, the husband will not open the door for anyone, no exceptions. There will be no compromises to this rule.

There won’t be any surprises. We already know what to expect. The Hospice staff is very generous with keeping me comfortable. They will be preventing pain, keeping me comfortable and they will be able to tell when the end is coming. When death is on its way, they will be able to give us warning so it is not such a surprise. I do not want to be surrounded by family and friends because I don't want people to cry over me while I die or when I am dead, interfere with the hospice staff and their process.  Please understand that will not bring me back or do anything different to change the situation. I also do not want your last memory of me to be of that. I have an outstanding hospice nurse who is very good at what she does and a husband that has been taking care of me since the very beginning.

As my favorite author says “You get what anyone gets you get a lifetime.” I had an extraordinary lifetime with no regrets and filled with love. 

Ok now for you guys. When the time comes, if you need it get therapy, don’t be ashamed of that. Mental health is a very important topic for me. Don't get stuck in this, if you need it talk to a therapist, get Prozac if you have to. Its ok. Prozac is an anti-depressant; those are a good thing for people that need it and that’s how I made it to where I did. If you feel anxious find a doctor and get the help you need.

Through this I have had a Rockstar neurosurgeon that did so much to help me. A very kind and caring neuro oncologist that honestly did everything he could and more for me. A husband that never left my side through this whole ordeal. Friends and family that stuck by me, cared about me and helped support me.  Even people I have never even met from online or from the Husbands work. Everyone involved has been truly amazing. But remember from the beginning they told me this was incurable, told me they could not save me, but would do everything they could for me. And that is what they did. We are talking hundreds of appointments. Hundreds upon hundreds of thousands of dollars’ worth of surgeries and treatments. But in the end, we always knew this was going to be the result.

There are not enough words to thank everyone who cared, supported, donated and listened. You helped more than you know.

I have no regrets living the extraordinary life I lived. My advice to everyone, dare to be brave, do things that that scare you, get outside of your comfort zone, because that's the point.

 Love you all…

 

complaining

Yall cancer HURTS YOUR SKIN, YOUR BONES, YOUR INSIDES, YOUR HEAD. I slept alll the live long day under sedation. I'm still so tired. Everything hurts please don't suggest pain killers hospice has got it handled. hospice is good with the prescriptions, I just needed to vent because I am cranky Thanks for listening. 

fself care

Formyown mentalhealth and actual health I'll be taking a break from social media. No need topanicijust needt turn it offfor a who while

 

Peacef out y'all 

not so awesome news

Short update-I got some news today to update, I am still processing this information I've mentioned before that I am in a wheelchair/walker but,I am no longer able to use the walker. the paralysis has progressed to the point that I have a1most no sensation left in my left arm or my left han dor my left leg. This makes it unreasonable. to propel myself in a wheelchair let alone hold myself up in a walker when I have no feeling. no strength no sensation in my left arm So I need an electric wheelchair for my one functional hand. I met with my Rockstar Neurosurgeon. My tumor is essentially inoperable if he goes in after it I will NOT wake up. I don't need second opinions from Drs Google and remember it is not my responsibility to comfort you if you feel sad that this thing is growing in my skull.

I asked the Rockstar NueuroSurgeon if it appeared possible 1 would walk again?

With the location and size of my tumor it is inoperable and any deficits from which I suffer are likely permanent

 

hair update

The hair situation. 

Long term Mohawk I kept it for as long as I could but it started to hurt my scalp. 

Suddenly I discovered I could do magic! Look what I could do!  Hair today. Gone tomorrow! My hair started coming out in clumps which no surprise there. I just thought it was hilarious.  I'm on chemo,so there was no surprise . Simply put I am too lazy to deal with the curl monster that emerges from my head so, only one thing to be done: 

wheels and a walker

Well hello again after all these weeks. 

I walked into the hospital using a cane. I came out needing a wheelchair. What I never expected was to be released handicapped fully unable to walk. And it was a chemo week so I was simply to tired to deal with this mess. So the Husband bought a wheelchair, a walker etc. While I slept, and he dealt with MY INSURANCE CANCELING. My former employer couldn't hold my position anymore, which means I am unemployed, and for a little bit I was uninsured. For those few minutes I was prescribed a medicine that cost several hundred dollars without insurance, and all that medical equipment came out of our pockets. Husband got every thing figured out but we have a new deductible (thousands of dollars higher) with a premium that is almost triple what i had to pay before. This is a bit of a struggle, never mind the fact that I need to become accustomed to being disabled. My legs simply don't work.  I have (had) a dvt, I have continued weakness in the other leg after that fall way back when, so no working legs, so unless I can get an octopus to donate some functioning legs to me i get to hang my out in my wheel chair and walker..i haven't been in the mood to blog. Or do anything. I don't want to leave the house, except on chemo days when I don't have a choice. Moral of the story. Appreciate your functioning legs while you can. 2 years ago I ran a 5k of which I'm so proud and I am just pushing to get my legs back in order to do another one at the end of the year. Man cancer sucks. 

Speak it into reality

Life is too short to forget about goals and the future, right? In these days of the coronapocalypse, it is a little difficult to plan for the future. Do I want to spend a week in the mountains locked away in a cabin in September?

Yes.

Do I want to take an Alaskan cruise in January? 

Yes.

Do I want to go back to Italy next March?

Of course I do. 

But the thing is, the coronapocalypse has ruined any way to plan for the future. When will this pandemic end?

 

So I can't really make plans for after the pandemic, because when will that be?

But I noticed on the Twitterverse that there were some people who were speaking their future into reality. For example, someone (I don't remember who) tweeted that in 3 months they would run a 5k (or something). And then they made it happen!

So, speaking the future into reality. By the end of 2020, I will complete my second 5k. (My first one was pre-cancer, and I ran/jogged the entire thing stopping to walk, in a respectable 32-ish minutes.)

Now, considering the cane, the cancer, and the likely continuing pandemic, I have no delusions of running a 5k in that kind of time; however, even if I have to walk or crawl or use crutches, I will complete a 5k by the end of the year.

And speaking more of the future into reality: is that by the end of the year I will get my writing published. Well, guess what.

I got a second piece published: Schrodinger's Cancer Patient.

I am extremely proud of this piece. And! I am that much closer to meeting my goals!

Published! "Mother's Love"

I've made it my goal to get my work published. I've been working hard compiling and organizing my writing, which includes poetry, prose, and creative non-fiction.

I am so pleased to announce that one of my pieces has been published through Lacuna Loft's blog. I know I've mentioned this organization before, and I will keep on linking and mentioning it as it has become a very important part of my life.

Anyway, I've been submitting my work for a few weeks now, across various platforms, and I am very proud to say that the first piece to be published is a personal essay called Mother's Love.

Please take a look and share with your friends and your family.

Hopefully soon I'll have more published works to share!

Tough week

Okay, so a LOT has happened in the last week.

Last week I had a good day in the hammock.

Two days after that, I had a couple of bad days that had my oncology concerned enough that they had me come in for labs and blood work. Turns out my results were bad enough that I needed a transfusion of one unit of blood last week. Then, a few days later, I woke up with the taste of blood in my throat. Evidently, a side effect of one of my meds can be bloody nose. But the thing was, it wasn't just a bloody nose.

It was a gusher.

When I say gusher, I do in fact mean that when The Husband saw it, we both knew immediately it was an emergency. We called the overnight on-call oncologist, who said in no uncertain terms that it was time to go to the ER right now.

The nearest hospital is almost thirty minutes away, and my nose gushed like a fountain the entire ride there. Luckily, there was nobody else there, so they saw me right away. Also, do you know how much more frightening the ER is when The Husband is not allowed in? Eventually, it stopped on its own, so I was able to go home (at 4 am). They did more blood work before letting me go, and said I would probably need another transfusion within a day or so. So we left messages for my oncology team to get my chart and notes sent over right away. First thing the next morning, my team got me in for more blood tests, and then scheduled my transfusion for the next morning. It would be a 6+hour process. Again, The Husband was not allowed in with me.

I don't know if any of you have ever needed a transfusion, but it is an exhausting process. I don't know why, but I can tell you that I basically slept for three days. Every time I closed my eyes for 5 minutes, I slept for 6 hours. Then I'd wake up hungry, then I'd close my eyes, and another 6 hours gone to dreamworld.

And suddenly, this morning, I woke up.

Alert.

Motivated.

Feeling almost strong. I guess it takes a few days to assimilate other people's blood? I don't know, but after having what might have been the worst week I've had in a long time, I suddenly feel kind of okay.

Knock on wood.

Sometimes It IS the little things

There comes a point in time where quarantine makes you crazy.

Now, being generally introverted and a loner helps, and I actually like spending time with The husband who is also generally introverted and a loner so it's all good, right?

BUT.

We can only sit and stare at these four walls for so long. The walls are great, but remember, I started my own quarantine when last flu season started. October-ish?

That is a really long time to be stuck in the house.

So, this morning, I woke up like a light switch went off in my head. Back in the before, The Husband and I were avid campers. I can't exactly go camping in my current condition, but we sure as hell could string up our hammocks by the lake and just enjoy a morning of social distancing and changing the scenery.

So I put The Husband to work stringing up both of our hammocks. I usually do my own, but he very kindly took care of it so that I could save some energy. (He's so nice to me!)

With the exception of occasional walks, I've spent almost no time outside, which is tough because we used to camp and hike just about every summer, just to be outside. I don't like bugs crawling on me, but I really like being outside.

I digress.

So this is a lake near where we live.

And these are my feet in the hammock next to the lake near where we live. Beautiful view and very quiet and relaxing. I brought a notebook with every intention of writing a letter, or a poem, or maybe a story or something.

Instead, my feet stayed right there and I dozed off for a while. I woke up when my belly started grumbling, so we cleared up, grabbed lunch, and went home. All in all, I'd argue it was one of the best quarantine days we've had in a while.