It has been awhile since I have done a post to publish. The last one I did is still a draft and will not see the light of day. I tended to talk in circles.
This one circles or no, I'll publish.
I'll be the first to admit that when they were talking about Covid-19 back in January and February I wasn't worried. Concerned yes, worried no. I figured it would have been on the spectrum of the Zeka virus.
Then comes the shit storm of March. I had a CT scan done where they found three tumors and a potential blockages in the small intestine.
Covid-19 was taking over and things were starting to get locked down. Or self quarantining if you will.
Then I get a call Apri17. Get to the ER at Mary Washington. Thank God that Jim and Liz were on their way here and almost here.
In the meantime the world is locking down borders, running out of PPE supplies. Hobby sewers and professional all turn to making masks for the hospitals. Hospitals are making employees sign for their homemade mask.
Ok, now I am in the hospital, Doctor says Monday we are doing surgery on you. Comes back later and says, no, we are doing surgery on you Sunday. I'll have my "A" team here. Oh lucky me.
Doc explains they are going in to remove the blockage of the small intestine. If they can get some of the tumors that would be a bonus. But, and this is a HUGE but. I may end up with an ileostomy bag. Temporarily. Depending on how healthy the small intestine is.
Well, I wake up to find out that they were able to get the blockage, and all three of the tumors. The tumors were all located near the blockage. I am left with two things. A small intestine that is the smallest it can possibly be and live, and an ileostomy bag.
The one thing I kept saying I don't want. A bag that I have to take care of because I constantly shit it in. To say I was/am horrified puts it mildly. I am horrified and embarrassed.
They teach me how to change the bag and empty it. They can't teach me how to deal with the leaks, the seal letting go, shit running down my leg, the bag letting go during the middle of the night, No, these are all things I have to learn on my own. I have to learn to deal with and accept. Besides, it is only temporary.
They wouldn't release me until I was sure of changing out my bag. Every other day I had a nurse that specialized in bags show me and watch me change the bag.
Ten days later I am home, building back up my strength and building my confidence with the bag. I was getting my strength back, walking, eating, showering. Almost a "normal" life. I even got to drive.
In the meantime, the Covid virus is still in the head lines, people are getting antsy to get out and try to have a life beyond quarentine. Governors are talking about lessening restrictions in phases.
May 17. I remember looking at the calendar and thinking only 4 more weeks. I can deal with this for four more weeks. Ate well that day, and played Catan with Jim and Liz. (I lost) but I felt good. Decided to go to bed about 9, got a sudden pain in the lower left absomen. I figured it was nothing and that I'd lay down and breath through it. Boy was I wrong.
The pain kept intensifying with no breaks. After about thirty minutes, I tapped out to the pain. I texted Jim saying I had to go to the ER, I couldn't take the pain anymore.
Getting me to the ER involved an ambulance ride, luckily they had a "chair" they could put me in to handle all the stairs. Off to Mary Washington ER. Once there I got checked in, and had to wait. When they finally got me in back they couldn't give me anything for the pain because my blood pressure was so low. But in the meantime, a CT scan was done.
Air in the small intestine, and ulcers. So they took a non surgical approach to the ulcer in the intestine. I had so many IVs going they finally put in a pik line (took two tries). I had IVs on the pik line, attached to my port, plus and IV in my right arm and hand.
Everything was going in through the left arm. It swelled up and started leaking through the skin. My vena cava is reduced in size, so my system is working on rerouting my veins. Lots of little veins to take over. Well, that produced a huge swelling of my neck. In fact I had no neck and couldn't swallow. Two doses of super steroids helped with the swelling and swallowing issue.
In the meantime they do another CT of the instestine, they discover cycsts. Off to get them either cut out or at least drained. They could only drain them. More antibiotics. While that is all happening they do an ultra sound of the neck and left arm. Turn out I have several blood clots.
They put me on blood thinner and draw blood every four hours. They can't use the left are for blood because of the pik line and swelling, so they used the right arm. My entire arm turned black and blue. Never mind the right arm is swelling too. Just not leaking like the left. Looking at my right arm today you would swear I was a junkie there are so many needle marks on my arm.
It seemed every time they "fixed" something, there was something else to take its place.
I finally said enough. No more. No more chemo, no more trying to use poison to make it better. I was feeling weaker and weaker every time something was done. No more surgeries, even if that means I have to keep the bag. I have had enough.
I am doing hospice. At least at home I can try to get stronger. And no more blood draws. Enough is enough.
My family understands why I decided what I did. In fact I am stronger today than when I came home a week ago. Still weak, but stronger.
I've been technically fighting cancer since 2003. Although I did have seven years of no evidence of desease. I am tired of taking poison everyday. I am tired of the anxiety over scans and waiting to hear what the doctors have to say. I am just tired.
I'll take time with my family and friends and what peace there is left in this world for me.
What was going on in the world while this was happening? Riots, protests over a wrongful death. Demands for justice.
Anyway you slice it, since March of 2020 this year turned to shit for everyone.
Please be kind to your neighbors, family, friends and strangers. Your small kindness can make someone's day better.
Showing posts with label terminal cancer. Show all posts
Showing posts with label terminal cancer. Show all posts
Monday, June 8, 2020
Wednesday, January 15, 2020
Depression
This may be depressing or even make you angry. But that is OK, because it gets a reaction from you.
If you know someone who suffers from depression either openly or silently, let them know you are there. It can make a huge difference.
I am depressed. Very depressed. Normally I try to hide it and put on that brave face like nothing is wrong and nothing can stop me. When I am around people I have a little switch that I can flip that puts the façade of everything is great.
Cancer is physically and emotionally exhausting. So is life to be honest.
I am at that Stage IV of the four emotional stages of terminal cancer. Actually it isn't just terminal cancer that depresses me. Life in general is depressing, but the cancer is the main reason, well one of two main reasons I feel this way.
I am tired of the hurry up and wait routine of cancer. I think I have said that before. Hurry up, set up the appointment for the doctor, now wait for the appointment. Hurry up and set up the appointment for the scan, now wait for the scan, then wait for the doctor to read it. Hurry up and wait. Then you get the results and it is either hurry up and wait nothing has changed or hurry up and figure out what is next because it spread. Hurry up and wait, don't plan anything because this can screw up the best laid plans. Or you go and plan or try to plan around the appointments or the unknown.
Hurry up and wait. Hurry up and wait. I am tired of hurry up and wait.
I am tired of being on disability. I am tired of being worried about making sure I can keep Medicare, I am tired of not working.
I want to work. I need a job. I need one that pays what I get on disability and has good health insurance. Yeah, the health insurance is a biggie in the hurry up and wait game. Yes, I want off of disability and I want to work. But finding that job that pays, has insurance and is willing to deal with the cancer issue is a rarity. Yes, discrimination is illegal. But that doesn't mean it doesn't happen and proving it is next to impossible.
I am tired of feeling alone. I need people and friends. Folks to hang out with and talk to. Someone that comes over just to BS. The connection of someone being there. I feel like my life is a drift in between the times that there are doctor's appointments, scans and the next job application. Like I am this little boat in an ocean just drifting with no where to anchor.
This isn't my best writing. I didn't expect it to be, but it is truth about how I feel, and I am sure there are others out there that feel the same way.
I am so tired of drifting and feeling lost and alone. I am so tired of feeling depressed. I am so tired of cancer and all the bullshit that goes with it. I am so tired of feeling worthless, that I have to depend on everyone if I get sick. I am so tired of feeling like if something happens I let people down, I am so tired of this whole cancer thing. I am so tired of feeling like a drain on my family and friends. LIke I always need them to be here an around me to make me feel better. I am so tired of being the strong one. I am so tired or feeling tired. I am so tired of the lack of taste and having to take meds every day.
I am just so tired. And I am sure there are others that feel the same way as I do.
I need to go back to school or something. Free. Yeah, that is the killer. Anyone know of a good search for grants for old, dying people who need to get a job?
I am tired of feeling worthless, like a drain on everyone.
Yeah, I'm depressed, but I am trying to be honest about it.
Monday, January 6, 2020
For the Want of a Card
First, the title is fitting. Back in October I was going through a real rough patch. Feeling kind of crappy, health insurance worries, and the car needing a transmission.
Well one day I decided that I was going to celebrate Christmas, 2019 as my First Christmas past my Expiration Date. Now the question you ask is how did I want to celebrate? Cards. Cards from everywhere. So I did this post on Jean's Bucket List on Facebook and explained what I was thinking and hoping for. It was shared over 38 times, which made me happy. I got Halloween and Thanksgiving cards, about 40 of them. I was hoping to get enough to fill the banisters and the cards would be the decorations.
The cards would come in maybe four or five in a week. But as of December 13 (I'll explain in a bit why I remember that date) only about 1/4 of it was filled. So my big sister Carol, being the way she is thought I should have more cards, so she sent a link to my post to WJLA news here in Northern Virginia. December 13 Caroline Patrickis from WJLA contacted me (by the way if you know her congratulate her! She's engaged!!) She came out and we sat and talked for about an hour, maybe a little more. Later on the 6:30 PM news they ran a segment.
Mind you I wasn't overly concerned about it, I was more focused on the fact my son gave me a ticket to come visit he and Liz in New Orleans - which was only a few days away.
Saturday, was a rough day for me. Felt out of kilter, and slightly depressed. I walked down to the mail box and opened it. What was in it caused me to jump. Someone left me Gerber Daisies. I love them, their color is so bright! There were a few cards too.
Monday when I got the mail there were two big bundles stuffed in the mail box. Around 380 pieces of it. I was s
o shocked. So I got them open, and got to work hanging. I still felt a little off, so I took a nap, I was dreaming about BBQ. I wanted BBQ.
I was totally floored. Then I started noticing where they were coming from, all over Virginia and Maryland, and neighboring states.
Tuesday and Wednesday deliveries were repeats of Monday, not a bundle, but two and three trays or totes of mail. All I could think was I wouldn't be able to get all of this mail open before I left on Thursday morning! I had to stay on task, get the house together, make sure the babysitter (THANK YOU SO MUCH FAYE!! My babies are my two dogs) get the cards opened and hung.
People were stopping by randomly Monday, Tuesday and Wednesday. Bringing cards, candy, cookies. I just couldn't fathom people doing this for me.
Then I left to visit my son. I was getting daily updates on the mail situation, and it was in full swing. By the time I got home there were 18 trays of cards in the office, and the day I got home they brought me three more. I stopped counting at 25 trays and tubs, because they were coming and going. Think of it 25 trays with an average of 300 cards per tray, that is 7500, seven thousand five hundred cards and packages!
People took the time to share memories with me. One gentleman wrote about being at Wrigley's Field. He wrote it so well that you could almost smell the hot dogs. Another lady took me on her first tandem jump from an airplane. One person said they didn't have a special place now, but remember how much love and security they always felt at their Grandparents home. Many people love the beach for the calming effects of the ocean, just as many love the mountains. One little boy said his favorite place is the soccer field because he loves to play. A little girl said her favorite place is with her family.
It amazed me in this time how many people said that their special place wasn't anywhere in particular, but it was their family and the memories they are building and sharing.
People thanked me for sharing my story which gave them the chance to slow down and walk memory lane. Oh, the memories people shared!
One gentleman, who is very well traveled by reading his adventures said his most favorite place of all is his home. No matter where he has traveled or the wonders he saw, home is the best place of all.
This is one Christmas that will always forever be in my memory. The world gave me an experience I will never forget. I am humbled and so very grateful.
The thing I am most grateful for is people that don't know me, shared a part of their lives, their memories with me. They opened their hearts.
This has given me hope for humanity.
The Interview well part of it. It shows the Caroling. If anyone has links to the interview or the stories on the Freelance post them in comments. Please.
The Holidays and Cancer
I hope this finds everyone healthy, happy, and looking forward to celebrating with family and friends.
This Christmas is my first Christmas past my "expiration" date or hospice date of December, 2018.
Actually I am calling it my "first" Christmas. On a Facebook post in the group "Jean's Bucket List", I posted that I wanted cards to celebrate. It has been shared 145 times the last time I looked. Not bad for a no body.
To be honest, I was hoping the cards would come in and help boost my spirit. I won't lie, this is a weird way to celebrate a holiday. The first one past when I was expected to be dead?
I find myself on an emotional rollercoaster. And no where on this trip is the holiday spirit showing its merry little head.
I'm somewhere in Stage IV, bordering on Stage III in the emotional department. The Four Emotional Stages of Terminal Cancer.
I'm grateful I am still here, but I also feel guilty I am still here. So many that had cancer are not. Why am I? I keep saying I am still here because I need to be a pain in the butt for my son and daughter. Which, I pray I am not.
People keep asking me what I am going to do for the holidays. The week before I will be able to spend time with my son, still working on a way to see my daughter, schedules interfere. On the day itself? December 25th? I will be home with my two dogs. There is a maybe of meeting a friend for dinner, she's spending the day with her dog too.
dogs (again, thanks to my son :D ). Just in case you don't know, I have two rescue dogs. I don't go anywhere if I can't take them or have someone I trust come babysit for them. Sasha, the 10 year old is a nervous nelly. She is scared of loud noises. The training from the base has her hiding in the closet. Bailey the 9 year old is the one who could care less, so she always is there with her, watching over her.
Huh, right now I feel better, so I am off to vacuum and do some laundry.
This Christmas is my first Christmas past my "expiration" date or hospice date of December, 2018.
Actually I am calling it my "first" Christmas. On a Facebook post in the group "Jean's Bucket List", I posted that I wanted cards to celebrate. It has been shared 145 times the last time I looked. Not bad for a no body.
To be honest, I was hoping the cards would come in and help boost my spirit. I won't lie, this is a weird way to celebrate a holiday. The first one past when I was expected to be dead?
I find myself on an emotional rollercoaster. And no where on this trip is the holiday spirit showing its merry little head.
 |
| Bailey |
I'm grateful I am still here, but I also feel guilty I am still here. So many that had cancer are not. Why am I? I keep saying I am still here because I need to be a pain in the butt for my son and daughter. Which, I pray I am not.
People keep asking me what I am going to do for the holidays. The week before I will be able to spend time with my son, still working on a way to see my daughter, schedules interfere. On the day itself? December 25th? I will be home with my two dogs. There is a maybe of meeting a friend for dinner, she's spending the day with her dog too.
I have a good life. Not every exciting, but I have a roof over my head (thanks to my son), and loveable
 |
| Sasha |
Huh, right now I feel better, so I am off to vacuum and do some laundry.
Saturday, December 14, 2019
A Visit to a FB Post - The Gift of Experience
I posted this on Facebook a year ago, and to be honest, I forgot about it. That is until today when someone liked it. I re read it and started wishing I would have rediscovered it at the beginning of the hectic holiday season.
Everyone is in such a hurry to find the perfect gift, rushing here and there, using up their life energy to find it. What if that perfect gift was as close as your phone? You know what I mean, that thing you are probably reading this on. It really is a multi functioning tool!!
Not only can this be a perfect thing for someone on your list, it is also a gift to yourself. What a bargain! Two for one!
I was chatting with a friend a while ago. She was lamenting over getting a gift for a mutual friend.
My suggestion was - give her an experience.
Her response - I can't afford to give an experience! That stuff is expensive!! Then I explained.
The gift of an experience is not a big trip. It could be something as simple as finding a new coffee roaster, going there and having a cup of coffee enjoying the fact you are together chatting. Or to a bakery that is out of the way known for pie, a card or letter, whatever your imagination can come up with. Maybe a trip to the zoo. Or simply sitting on a park bench enjoying the weather having lunch. Or a phone call just to laugh at things in memory lane. Yes, phone calls are gifts. (Even to those of us who have come to hate phones)
A gift of experience doesn't have to be something big, heck, it doesn't even have to be from someone else. You can give yourself gifts of experiences.
The gift is connection. That connection will last longer than things.
Think of it this way. Things are just things. They can be useful, or decorative, even wearable. But they get old and fade, maybe break, go out of fashion or just become a bother because it is one more thing to handle or deal with.
An experience is forever!! The memory is always there accessible. The laughter or the simple serenity of the moment the sunshine feeling warm on your face and the breeze gently blowing your hair.
So we all can give each other and ourselves those memorable gifts.
Tuesday, November 26, 2019
The Four Emotional Stages of Terminal Cancer
Well, some people may say there are more, but I believe there are four major stages.
Stage I - Devastation & Anger
No one wants to hear the words you have cancer. Honestly. No one. There is less than no one that wants to hear the words you are terminal. Although, come to think of it, I am not sure they word it that way today.
I am going to be honest here. I didn't go through this stage; well, at least the devastation part. I had actually expected to hear it. When you are diagnoised for the sixth time and they tell you that all they could do was de-bulk the tumors, you sort of know. But I will admit, when one doctor slipped and said "I encourage all my terminal patients to go do what they want." I thought, well damn it is about time someone said something.
During this stage you grieve for your life. You grieve for those you will leave behind. You grieve because you don't want to cause anyone pain. You grieve for the things you want to do but won't be able to.
The devastation slowly turns to anger, and for some it boils red hot. You're angry about cancer interfering with your life, your plans. Basically it just came in and F**ked up your world.
After being red hot angry, you start to funnel all that negative anger into the next stage, well hopefully you do.
I actually forgot about the anger part and had to do an edit to add it. Anger is such a negative feeling and it really doesn't help. Yes, I went through the anger. How dare cancer come back again and again to interfere with my life?
When I am feeling angry, I try to funnel the anger into Stage II.
Stage II - Fight to Win
During this stage you put on your shining armor and proclaim to the world you will fight this monster and you will beat it.
You gather your troops, your family and friends. They cheer you on. They even help you do things you have only dreamed of. They watch you with pride and admiration.
You laugh at the cancer, knowing that you are greater than it.
You are proud to set the example of being brave in the face of death.
In reality this stage can be exhausting.
Stage III - Acceptance
In this stage your armor is beat up a bit, lots of dings, you've been through chemo, maybe even radiation and surgery.
You start to accept and come to terms with your mortality. You start to encourage people to do things, make memories. Don't give things as gifts, give experiences and memories. Memories last forever.
You realize how precious the little things are. You even work on the bucket list. Maybe even with a vengeance. That way you have memories. You take whoever you can on the journeys so they have the memories too.
You notice your friends may not be around much, not that they don't want to be but they have lives of their own and you seem to be doing well.
You haven't given up, and you fight, but you start really living life like you should have all along.
Stage IV - Exhaustion - Isolationism
Your armor is pretty damaged here. You've been through hell and back. In the beginning of this you start to pull back from people. You don't want to have them hurting when you die. Gradually you pull back till there is no one around or very, very few.
You try to protect others by isolating yourself.
Add to that the emotional, mental and physical exhaustion of doctors appointments, scans, blood tests, chemo, radiation, even counseling for some.
In the back of your mind you think, how much longer? How long to I have to act like everything is fine, that I am ok. How much longer before the chemo doesn't work, how much longer before I end up in the hospital.
You feel like your whole life has become cancer. Everything you do or plan revolves around it. It is emotionally and physically exhausting. It is depressing.
Depression really rears its ugly head here. It feeds the negative feelings, the negative feelings feed the depression. It is a vicious cycle.
This is the stage you need help the most, but most people don't realize it happens. They always believe the brave face, and miss the little things that give it away.
How can you help prevent them from isolating? Get involved, go for coffee - don't take no for an answer. Don't let the person be alone all of the time. 24/7 alone in ones head can cause some reall messes. Pick up the phone. Trust me at this stage they aren't picking the phone up to call anyone if they can avoid it.
Do something to let them know that they haven't been forgotten.
I know communication goes both ways but when you are in this stage it isn't easy to admit it, and harder yet to ask for help.
Hell, I can't say anything about asking for help. It is the hardest thing in the world for me to do so I just keep my mouth shut other than when I whine in my journal or blog.
Some people will go back and forth between Stage III - Acceptance and Stage IV - Exhaustion/Isolationism.
I've just spent a long time in Stage IV. I am working to bring myself out of it. I am trying to reach
out and socialize more. It isn't easy. But I am working on it.
I am also working on the asking for help thing. Not doing so well with that. I am blessed to have a couple of friends that see my red flags, and family that does too.
Just remember, there is no time limit to any one of these stages. A person can experience all four in one day, or different ones on different days. You can experience them in different orders.
There is no hard fast rule to this, well, maybe there is one. It is an emotional rollercoaster.
It is a rollercoaster we do not want to ride but have no choice.
It is a rollercoaster we ride and unfortunately we need our family and friends to ride it with us on occasion to make it possible to keep fighting.
Just remember, our caregivers go through this too. It is really hard on them. They don't know what to do and if we don't communicate, they feel helpless and lost. Just as much as we do.
Cancer is hard on us, but it is just as hard on family and friends. They want to fix us, to make us better and healthy, but they can't.
Being able to communicate is the key. So if they push to help, don't be angry, be grateful. Let them help. Don't be hard headed. Learn to ask for help.
Always, always be kind to yourself.
Stage I - Devastation & Anger
 |
| Your world is on fire and there is nothing you can do |
No one wants to hear the words you have cancer. Honestly. No one. There is less than no one that wants to hear the words you are terminal. Although, come to think of it, I am not sure they word it that way today.
I am going to be honest here. I didn't go through this stage; well, at least the devastation part. I had actually expected to hear it. When you are diagnoised for the sixth time and they tell you that all they could do was de-bulk the tumors, you sort of know. But I will admit, when one doctor slipped and said "I encourage all my terminal patients to go do what they want." I thought, well damn it is about time someone said something.
During this stage you grieve for your life. You grieve for those you will leave behind. You grieve because you don't want to cause anyone pain. You grieve for the things you want to do but won't be able to.
The devastation slowly turns to anger, and for some it boils red hot. You're angry about cancer interfering with your life, your plans. Basically it just came in and F**ked up your world.
After being red hot angry, you start to funnel all that negative anger into the next stage, well hopefully you do.
I actually forgot about the anger part and had to do an edit to add it. Anger is such a negative feeling and it really doesn't help. Yes, I went through the anger. How dare cancer come back again and again to interfere with my life?
When I am feeling angry, I try to funnel the anger into Stage II.
 |
You don your shiny armor and brave face
|
During this stage you put on your shining armor and proclaim to the world you will fight this monster and you will beat it.
You gather your troops, your family and friends. They cheer you on. They even help you do things you have only dreamed of. They watch you with pride and admiration.
You laugh at the cancer, knowing that you are greater than it.
You are proud to set the example of being brave in the face of death.
In reality this stage can be exhausting.
Stage III - Acceptance
You start to accept and come to terms with your mortality. You start to encourage people to do things, make memories. Don't give things as gifts, give experiences and memories. Memories last forever.
You realize how precious the little things are. You even work on the bucket list. Maybe even with a vengeance. That way you have memories. You take whoever you can on the journeys so they have the memories too.
You notice your friends may not be around much, not that they don't want to be but they have lives of their own and you seem to be doing well.
You haven't given up, and you fight, but you start really living life like you should have all along.
Stage IV - Exhaustion - Isolationism
 |
| You are tired before you even start |
Your armor is pretty damaged here. You've been through hell and back. In the beginning of this you start to pull back from people. You don't want to have them hurting when you die. Gradually you pull back till there is no one around or very, very few.
You try to protect others by isolating yourself.
Add to that the emotional, mental and physical exhaustion of doctors appointments, scans, blood tests, chemo, radiation, even counseling for some.
In the back of your mind you think, how much longer? How long to I have to act like everything is fine, that I am ok. How much longer before the chemo doesn't work, how much longer before I end up in the hospital.
You feel like your whole life has become cancer. Everything you do or plan revolves around it. It is emotionally and physically exhausting. It is depressing.
Depression really rears its ugly head here. It feeds the negative feelings, the negative feelings feed the depression. It is a vicious cycle.
 |
| You convince yourself it is for everyone's best |
How can you help prevent them from isolating? Get involved, go for coffee - don't take no for an answer. Don't let the person be alone all of the time. 24/7 alone in ones head can cause some reall messes. Pick up the phone. Trust me at this stage they aren't picking the phone up to call anyone if they can avoid it.
Do something to let them know that they haven't been forgotten.
I know communication goes both ways but when you are in this stage it isn't easy to admit it, and harder yet to ask for help.
Hell, I can't say anything about asking for help. It is the hardest thing in the world for me to do so I just keep my mouth shut other than when I whine in my journal or blog.
Some people will go back and forth between Stage III - Acceptance and Stage IV - Exhaustion/Isolationism.
I've just spent a long time in Stage IV. I am working to bring myself out of it. I am trying to reach
 |
| You hide your feelings |
I am also working on the asking for help thing. Not doing so well with that. I am blessed to have a couple of friends that see my red flags, and family that does too.
Just remember, there is no time limit to any one of these stages. A person can experience all four in one day, or different ones on different days. You can experience them in different orders.
There is no hard fast rule to this, well, maybe there is one. It is an emotional rollercoaster.
It is a rollercoaster we do not want to ride but have no choice.
It is a rollercoaster we ride and unfortunately we need our family and friends to ride it with us on occasion to make it possible to keep fighting.
Just remember, our caregivers go through this too. It is really hard on them. They don't know what to do and if we don't communicate, they feel helpless and lost. Just as much as we do.
Cancer is hard on us, but it is just as hard on family and friends. They want to fix us, to make us better and healthy, but they can't.
Being able to communicate is the key. So if they push to help, don't be angry, be grateful. Let them help. Don't be hard headed. Learn to ask for help.
Always, always be kind to yourself.
Sunday, November 24, 2019
The Most Asked Question - How do you do it?
I'm not sure that today is the best day to be writing this; but the words are rolling around in my head and I can get on the laptop to put them into "print." The reason I say that is I am not in the best of head spaces at the moment, but maybe that is not so bad. It means a glimpse into the other side.
I don't know how I do it. Part of it is guilt. Does that surprise you? Yes guilt. I feel that I would be abandoning the people I love. Abandoning my son and daughter, my sisters, my friends. I feel the guilt because I can imagine the sadness that my death would bring them. I do not want people I love to feel sad because of me.
Here is the other side of the guilt. I feel guilty for still being around when so many that have been diagnosed after me had passed on. Survivor's guilt they call it. It sucks. I've lost too many people to cancer. Waiting for it to take me is like waiting for the other shoe to drop.
How do I do it? I don't know. I am tired. I may have mentioned it before in a post. But I am tired of cancer.
Once was enough, 2003 was more than enough, but no for some reason I drew the lucky number in the cancer lottery. 2011 was awful. I lost 2/3 of my right lung that year, and part of my intestines. Spent three quarters of the year doing chemo, surgery, and being hospitalized. Even lost a portion of my right pectoral muscle that year. That was the year the earthquake hit Virginia. I was in the hospital when it hit. Then 2013, 2014, twice in 2016.
The first time in 2016 was May. Tumor in the lung showed up. Surgery, they got good margins, no chemo. Then again in November. I started feeling like I couldn't breath because of bronchitis or walking pneumonia. Finally went to the ER. Boy was I wrong. Surgery was scheduled right before Christmas. I thought they would just go in remove the tumors, but no, all they could do was drain the lung and debulk the tumors. They are in my left lung, on the sack of the heart, in the lymph nodes, on the Vena Cava, and aorta. Surgery really isn't an option anymore.
So yeah, I am tired. I am tired of the trips to the doctor's office and his smiling face, telling me how great I am doing even though they really can't do anything for the cancer other than try to keep it from spreading, which really has been proven fruitless. Eight months on a chemo and it spreads. Since January 2017 I have been on three different chemo drugs.
I am tired of the blood draws, the CT scans, waiting for the reports. I am tired of them trying to make everything sound so up. Just be straight with me. Did it spread? Yes or no? What is the next drug? Just tell me.
Right now they are trying to give me quality of life rather than quantity.
The chemo I am on, Votrient, is the easiest chemo I've been on. So far my side effects have been nausea, some fatigue, some shortness of breath, and my hair changing from dark brown to varying shades of silver and grey. Salt and pepper.
I am tired of having to remember to take poison every morning. 800 mg of it. Yeah, my breakfast is 800 mg of Votrient and water. I have to wait about 15 minutes before I can have my first cup of coffee.
I am tired of feeling weak. The Yolandis that I was on caused major breathing issues, so my physical activity was limited. Kind of hard to want to do something physical when you can't breath. Now on the Votrient the breathing issues are still there, but improved 100%. I need to start working out to get into better shape, but I need motivation.
I am tired of feeling like I am a drain on my family and friends.
I am tired of worrying about co payments, taking meds, fighting the bills that were supposed to be covered. Tired of worrying about gap insurance now I am on Medicare.
Did you know that insurance companies can pick and choose the areas (counties) they want to cover? They don't have to offer gap insurance to everyone? If I were 65 I'd have plans available. Since I am not there is only one plan for people under 65 on disability, and they don't cover my area. Medicaid is out because they said I am $200 over their cap on qualifying. So now I have the 20% to cover that Medicare doesn't. Grateful they cover 80% of the doctor's and hospital, but, yeah, I'm tired of worrying about that.
I am so tired of needles and blood draws, and reading then rereading the reports.
I am tired of feeling like if I show any weakness people will think less of me. I am tired of feeling like I whine.
I am tired of the isolation. I feel alone. The days are all filled with the same thing. I try to motivate, but it is really hard some days. Yes, there are days I just go back to bed. There are some days that I don't want to get up, but my dogs remind me that they are my responsibility and I have to take care of them because they love me.
Don't get me wrong, I don't wallow in pity. I am working on socializing more. I volunteer twice a week at Mary Washington. One day for three hours we sew cough pillows for patients. And the other day I volunteer I work in the Gift Shop. I also go to "Meet up" things, there is a group of single people 50 and over that meet up and I try to go once a month. I need to make more friends locally to have coffee with and talk to. Like I said, I am working on it.
I am so tired of feeling like I am in white water rapids being rushed down the river with no hope.
How do I do it? I don't know. I journal. Everyday. Even if all I do is write down that I feel like crap. I try to write something down every day to get it out.
I write this blog, yes, I don't write often, and it may not get read much, but with it I am trying to show my inner feelings and frustrations, so it is an outlet. I actually end up feeling better by the time it is published.
How do I do it? In my heart I know that my family and friends are there.
An update on the Lowe's job. I emailed my supervisor about my concerns when it came to the customer service, and my inability to lift the 5 gallon buckets, and my limit to 15 hours a week. Along with the concern of being scheduled three 8 hour days in a row. (Down stocking and fronting on a four hour shift exhausted me, and I was honest with them in the interview I am not in shape, and I need to work on stamina). After not hearing any response for five days, I figured that maybe I should work on getting in better shape before I try working there. So I resigned. I really didn't feel comfortable my concerns were not address.
I haven't given up looking for a part time job either. There is something out there that can help me financially, physically and yes, mentally.
Thanks for reading this, I am in a better head space now. Time to go have some breakfast and vacuum.
I don't know how I do it. Part of it is guilt. Does that surprise you? Yes guilt. I feel that I would be abandoning the people I love. Abandoning my son and daughter, my sisters, my friends. I feel the guilt because I can imagine the sadness that my death would bring them. I do not want people I love to feel sad because of me.
Here is the other side of the guilt. I feel guilty for still being around when so many that have been diagnosed after me had passed on. Survivor's guilt they call it. It sucks. I've lost too many people to cancer. Waiting for it to take me is like waiting for the other shoe to drop.
How do I do it? I don't know. I am tired. I may have mentioned it before in a post. But I am tired of cancer.
Once was enough, 2003 was more than enough, but no for some reason I drew the lucky number in the cancer lottery. 2011 was awful. I lost 2/3 of my right lung that year, and part of my intestines. Spent three quarters of the year doing chemo, surgery, and being hospitalized. Even lost a portion of my right pectoral muscle that year. That was the year the earthquake hit Virginia. I was in the hospital when it hit. Then 2013, 2014, twice in 2016.
The first time in 2016 was May. Tumor in the lung showed up. Surgery, they got good margins, no chemo. Then again in November. I started feeling like I couldn't breath because of bronchitis or walking pneumonia. Finally went to the ER. Boy was I wrong. Surgery was scheduled right before Christmas. I thought they would just go in remove the tumors, but no, all they could do was drain the lung and debulk the tumors. They are in my left lung, on the sack of the heart, in the lymph nodes, on the Vena Cava, and aorta. Surgery really isn't an option anymore.
So yeah, I am tired. I am tired of the trips to the doctor's office and his smiling face, telling me how great I am doing even though they really can't do anything for the cancer other than try to keep it from spreading, which really has been proven fruitless. Eight months on a chemo and it spreads. Since January 2017 I have been on three different chemo drugs.
I am tired of the blood draws, the CT scans, waiting for the reports. I am tired of them trying to make everything sound so up. Just be straight with me. Did it spread? Yes or no? What is the next drug? Just tell me.
Right now they are trying to give me quality of life rather than quantity.
The chemo I am on, Votrient, is the easiest chemo I've been on. So far my side effects have been nausea, some fatigue, some shortness of breath, and my hair changing from dark brown to varying shades of silver and grey. Salt and pepper.
I am tired of having to remember to take poison every morning. 800 mg of it. Yeah, my breakfast is 800 mg of Votrient and water. I have to wait about 15 minutes before I can have my first cup of coffee.
I am tired of feeling weak. The Yolandis that I was on caused major breathing issues, so my physical activity was limited. Kind of hard to want to do something physical when you can't breath. Now on the Votrient the breathing issues are still there, but improved 100%. I need to start working out to get into better shape, but I need motivation.
I am tired of feeling like I am a drain on my family and friends.
I am tired of worrying about co payments, taking meds, fighting the bills that were supposed to be covered. Tired of worrying about gap insurance now I am on Medicare.
Did you know that insurance companies can pick and choose the areas (counties) they want to cover? They don't have to offer gap insurance to everyone? If I were 65 I'd have plans available. Since I am not there is only one plan for people under 65 on disability, and they don't cover my area. Medicaid is out because they said I am $200 over their cap on qualifying. So now I have the 20% to cover that Medicare doesn't. Grateful they cover 80% of the doctor's and hospital, but, yeah, I'm tired of worrying about that.
I am so tired of needles and blood draws, and reading then rereading the reports.
I am tired of feeling like if I show any weakness people will think less of me. I am tired of feeling like I whine.
 |
| My daughter Jasmine, my dog Sasha, me, my dog Bailey |
Don't get me wrong, I don't wallow in pity. I am working on socializing more. I volunteer twice a week at Mary Washington. One day for three hours we sew cough pillows for patients. And the other day I volunteer I work in the Gift Shop. I also go to "Meet up" things, there is a group of single people 50 and over that meet up and I try to go once a month. I need to make more friends locally to have coffee with and talk to. Like I said, I am working on it.
I am so tired of feeling like I am in white water rapids being rushed down the river with no hope.
How do I do it? I don't know. I journal. Everyday. Even if all I do is write down that I feel like crap. I try to write something down every day to get it out.
I write this blog, yes, I don't write often, and it may not get read much, but with it I am trying to show my inner feelings and frustrations, so it is an outlet. I actually end up feeling better by the time it is published.
How do I do it? In my heart I know that my family and friends are there.
An update on the Lowe's job. I emailed my supervisor about my concerns when it came to the customer service, and my inability to lift the 5 gallon buckets, and my limit to 15 hours a week. Along with the concern of being scheduled three 8 hour days in a row. (Down stocking and fronting on a four hour shift exhausted me, and I was honest with them in the interview I am not in shape, and I need to work on stamina). After not hearing any response for five days, I figured that maybe I should work on getting in better shape before I try working there. So I resigned. I really didn't feel comfortable my concerns were not address.
I haven't given up looking for a part time job either. There is something out there that can help me financially, physically and yes, mentally.
Thanks for reading this, I am in a better head space now. Time to go have some breakfast and vacuum.
Tuesday, October 9, 2018
Time Keeps on Slipping, Slipping....
For the most part the terminal thing doesn't bother me. We are all going to die someday. Just some
of us know it will be sooner rather than later. To be honest, I'd prefer later. Much, much later; but it seems later is a very relative term too. Later to me would be measured in years rather than months.
You guessed it. Today being terminal bothers me a bit. There are actually several things that go into it bothering me today - well OK on the days it does bother me; they are not all that often but it happens.
For instance, time does fly. Even when I am doing nothing. Before I know it I am making dinner, feeding the dogs and deciding if I want to read or watch an hour or two of TV. Seriously, I mean a day of nothing. Vacuum, dishes, sit outside if it is nice. If I decide to read - well there goes hours. Another day gone. Am I a day closer? I don't know. To be honest neither does the doctor, but considering that the tumors are growing on the aorta, on the left lung and in the intestine, well that just doesn't give me a warm fuzzy.
I am considered disabled because of the terminal cancer, and the side effects that the chemo causes. I have really good days, and about a week to ten days of crap after chemo. I'd love to be working, but I have that conundrum, should I be honest? Usually things bite me in the rear when I don't do the right thing.
During interviews you do not have to give any health information. But once you have a job offer, well, that is where things can get sticky. To be honest, I totally understand it. I mean do you tell them "Hey by the way now I am hired, I have to do chemo every 3 weeks, am sick for about 10 days after, need time off for doctor appointments, oh yeah CT scans, Echo cardiograms every 3 weeks, and there probably will be an occasional stay in the hospital. Oh, and they say it is terminal." Could you see the look on the face? That would be one to take a picture of. Not to mention I'd burst out laughing. But I sort of miss working. I had a game plan. Monday through Friday was work. Saturday and Sunday, field day the house and one project in the house. Structure. As crazy as it can make me, I had structure. I have tried the schedule thing, yeah, I am not the best in the world at it. But I keep trying.
Although if I do things right I could be constantly on the run - but I'd have to win the lottery for that, oh yeah, I have one ticket I need to check the numbers on. Keep your fingers crossed.
Yes, I have done some amazing things in the past year and a half - give or take, but I'd rather not be
terminal. I'd rather not have that in the back of my mind waiting to sneak out and tell me that the clock is ticking, get to living before you die.
I would trade it all, for a "normal" by my definition of life, more time with my family. More time with Jim, Liz and Jasmine. More time to learn. Learn what? I don't know. There is a whole world of knowledge out there, and I am trying to ingest some of it.
Chemo brain really sucks. Things get in my brain, but get lost in there. Remember when we went to France and Italy? Here is an example of chemo brain. I had been doing Italian language courses for a year, even before the cancer came back. Basic beginner, I don't want to look like a total idiot tourist stuff. What did I remember? Bango. BATHROOM. Seriously. That is it. Still can't remember sh**! Bango, bathroom, sh**. Get it? Where is your sense of humor?
Right now every so often I get the little voice in my head - "Hurry up do this, do something, do that, face this fear, go here, go there, don't worry about finances, eat this, do that, hurry, hurry, hurry, you are wasting time. You're going to die. Hurry!"
That voice can cause a paralysis. What to do? How do I get there? What will it cost? Where do I go? Add that to the normal life things, paying for groceries, utilities and the such my head just gets crazy. Those questions run rampant in my head the days the little voice screams at me the end is near.
It is very easy (I have been very guilty of this) to allow oneself to become isolated and introverted. It can be exhausting to be around people. Not because of the chemo, but because sometimes people are exhausting.
For me it is easier to speak to a group of people than individuals. Hard to believe? It is true. Well, as long as I could walk around. Standing in one place may be a challenge.
When I went to the Intro to Kayaking I had all sorts of reasons why I should just stay home and skip it. Really, some of them were good, some were from left field. Why? I don't know. Perhaps it was because it was beyond my comfort zone.
Water aerobics is on the horizon. I actually have a swimsuit I will wear. Tomorrow on the way back
from the mechanic (car is clunking left front, and a hum right rear wheels told you I have first world problems) I'll stop at the pool and see what the schedule is. Classes at 10:00 would be nice.
I am not depressed. I know what that feels like, I am just not liking things right now. No, I am not sorry for myself. I will never be sorry for myself. Cancer has taught me how strong I can be, and how amazing my family and friends are.
Ever see that movie "The Secrete Life of Walter Mitty"? I am Walter. I am that person who had gotten comfortable in my life working everyday, paying bills, squirrelling away a little nest egg (those things go fast by the way, so try to double your nest egg, don't learn the hard way you should have doubled it) being forced to face life and do things that I would only dream of and never do. Only I keep realizing there is so much more I want to do - and time keeps on slipping, slipping.
I just don't want to have it end.
You guessed it. Today being terminal bothers me a bit. There are actually several things that go into it bothering me today - well OK on the days it does bother me; they are not all that often but it happens.
For instance, time does fly. Even when I am doing nothing. Before I know it I am making dinner, feeding the dogs and deciding if I want to read or watch an hour or two of TV. Seriously, I mean a day of nothing. Vacuum, dishes, sit outside if it is nice. If I decide to read - well there goes hours. Another day gone. Am I a day closer? I don't know. To be honest neither does the doctor, but considering that the tumors are growing on the aorta, on the left lung and in the intestine, well that just doesn't give me a warm fuzzy.
During interviews you do not have to give any health information. But once you have a job offer, well, that is where things can get sticky. To be honest, I totally understand it. I mean do you tell them "Hey by the way now I am hired, I have to do chemo every 3 weeks, am sick for about 10 days after, need time off for doctor appointments, oh yeah CT scans, Echo cardiograms every 3 weeks, and there probably will be an occasional stay in the hospital. Oh, and they say it is terminal." Could you see the look on the face? That would be one to take a picture of. Not to mention I'd burst out laughing. But I sort of miss working. I had a game plan. Monday through Friday was work. Saturday and Sunday, field day the house and one project in the house. Structure. As crazy as it can make me, I had structure. I have tried the schedule thing, yeah, I am not the best in the world at it. But I keep trying.
Although if I do things right I could be constantly on the run - but I'd have to win the lottery for that, oh yeah, I have one ticket I need to check the numbers on. Keep your fingers crossed.
Yes, I have done some amazing things in the past year and a half - give or take, but I'd rather not be
I would trade it all, for a "normal" by my definition of life, more time with my family. More time with Jim, Liz and Jasmine. More time to learn. Learn what? I don't know. There is a whole world of knowledge out there, and I am trying to ingest some of it.
Chemo brain really sucks. Things get in my brain, but get lost in there. Remember when we went to France and Italy? Here is an example of chemo brain. I had been doing Italian language courses for a year, even before the cancer came back. Basic beginner, I don't want to look like a total idiot tourist stuff. What did I remember? Bango. BATHROOM. Seriously. That is it. Still can't remember sh**! Bango, bathroom, sh**. Get it? Where is your sense of humor?
Right now every so often I get the little voice in my head - "Hurry up do this, do something, do that, face this fear, go here, go there, don't worry about finances, eat this, do that, hurry, hurry, hurry, you are wasting time. You're going to die. Hurry!"
It is very easy (I have been very guilty of this) to allow oneself to become isolated and introverted. It can be exhausting to be around people. Not because of the chemo, but because sometimes people are exhausting.
For me it is easier to speak to a group of people than individuals. Hard to believe? It is true. Well, as long as I could walk around. Standing in one place may be a challenge.
When I went to the Intro to Kayaking I had all sorts of reasons why I should just stay home and skip it. Really, some of them were good, some were from left field. Why? I don't know. Perhaps it was because it was beyond my comfort zone.
Water aerobics is on the horizon. I actually have a swimsuit I will wear. Tomorrow on the way back
I am not depressed. I know what that feels like, I am just not liking things right now. No, I am not sorry for myself. I will never be sorry for myself. Cancer has taught me how strong I can be, and how amazing my family and friends are.
Ever see that movie "The Secrete Life of Walter Mitty"? I am Walter. I am that person who had gotten comfortable in my life working everyday, paying bills, squirrelling away a little nest egg (those things go fast by the way, so try to double your nest egg, don't learn the hard way you should have doubled it) being forced to face life and do things that I would only dream of and never do. Only I keep realizing there is so much more I want to do - and time keeps on slipping, slipping.
I just don't want to have it end.
Saturday, August 18, 2018
Face Your Fears
To be honest, just about everything I have done on my "adventures" (including my day to day not so high pressure life - seriously, my stress factor is dust and dog hair and keeping the house looking clean).
It has been mentioned from time to time (OKAY, I harp on occasions) but it is something that needs to be revisited.
Let me explain something first. To me there are fears and there are phobias. A phobia to me is something that can literally paralyze you. Okay, so they can be the same. Just thinking about some of mine and how they affect me. But a fear can be not doing something because you don't know how, or are afraid of looking foolish, or meeting new people.
When I decided to jump out of a perfectly good plane, for example. There was fear. No doubt about it. But not so much that it paralyzed me. So I jumped. Guess what? It was amazing.
I have issues with meeting new people too. I am uncomfortable. Yes, I have trust issues. I feel awkward, out of my element. What is my element? My home. My Kindle. The library. So going and doing new things requires me to actually push myself. I am a great actress. Most people say I look like I am comfortable with new folk. I try.
Trust me, I can talk myself out of doing something very easily, and stay in my "safe" bubble.
That brings me to phobias. Yes, you can overcome them, and work on it. Depending on what it is, you may be able to go it alone, or get a little help from your friends.
For example. Spiders. I hate, hate, hate, hate them. Bugs too for the record (some more than others). When you live on your own, you have to learn to deal with them. I am not totally fine with spiders, but now I can smash them to smithereens with something. Or spray the insecticide on them. I don't like it, and my stomach flops after I am done, even can have the shakes, but I am not as bad as before. Trust me, there are some that I will not deal with and run, screaming like a little girl to get a way from, and find someone else to kill the spider or bug. Just looking at pictures of them creeps me out so bad I get nauseated.
Haven conquered the fear, but I have gotten better.
Now onto the big one. One that I can panic from. I am terrified of water above my head. I mean, when I first started this venture, full tilt panic. But I like the water, it is peaceful when not storming - so go figure.
I started facing the water fear four years ago? I made a dream trip to Bali. I always wanted to scuba dive somewhere the water is clear. I can swim underwater, so of, go figure. I never said this made any sort of logical sense. My swimming ability has been drastically reduced since they removed the left hamstring. I never realized how useful the hamstring was in swimming until I tried. OH, yeah, I have been afraid of the water since I was around 10. Nearly drown. Yes, after that I learned to swim, but it didn't help much.
The instructor was really understanding. I wouldn't call what we did diving, but I got into the clear ocean, when down a few feet, came up, went down a few more feet, came up, did that probably five or six times before panic starting edging in. The water being so clear was a help I believe.
I also dislike smaller boats. I am afraid they will flip, and I'll be in deep water that is murky and can't see in. Paddle boats aren't too bad, they seem harder to flip over. Canoes on the other hand. Well....
One of the times I was visiting New Orleans, Jim, Liz, and I went to City Park. They didn't have any kayaks, but they had canoes. Jim and I had one, Liz I believe got the last kayak.
I had a death grip on the sides of the canoe. But gradually I relaxed, and started taking pictures. Oh, there were a couple times I grabbed back on the boat with that death grip, but I made it.
Today I got into a kayak. They had an intro to kayaking for seniors, so I signed up for it. I made myself get up at 06:00 to go. Took care of the dogs, made coffee, grabbed a sandwich for a snack. I was set. Got into the car, my mind started coming up with all the reasons why I SHOULDN'T do this. All I could think of was the kayak flipping over and me being stuck underwater. OR just flipping it and being embarrassed.
Gritting my teeth, I drove to Curtis Lake Park. There were a total of seven people there for the class, everyone else had been in a kayak before, on vacation or with rentals. They wanted a better idea of the right way to kayak.
They had us all introduce ourselves and explain why we had taken the class. It was my turn. "Hi, I am Jean Lee, and I am here to face one of my fears. I have never been in a kayak before."
To say getting in was a bit awkward puts it very politely, but I got in and didn't flip it.
The one volunteer could tell I was a bit apprehensive, and she talked me through a couple of things. I finally relaxed (still had a death grip on the paddle) but I was able to stop and just be. Whenever I got antsy, I stopped, breathed and was just there.
Rowing got a bit frustrating for me. I rowed like a drunken sailor. After awhile, I was doing it decently, and could feel the difference in the kayak movement, but as soon as I realized I was rowing correctly, I lost the rhythm.
Would I do it again? Yes. Would I still be afraid? Yes. There is a trip they are doing Tuesday from Crows Nest, and if I didn't have to get my stuff together and packed for Adult Summer Camp, I'd go. Yes, I pack and unpack just so I can Tetris everything into the smallest space possible.
Come to think of it, I will be doing this again at Adult Summer Camp. There is even beginner rapids.
What fear have you faced? It doesn't have to be a big huge effort. Sometimes, just the act of a person walking out the front door is facing a fear. For some females, walking out the door with no makeup on is terrifying.
So what little fear have you faced today.
Monday, June 18, 2018
Hearing "You have cancer", and a Burning Question at the End of this.
To be honest I laugh about it now, and to be honest, I laughed about it then too. Then is the first time I was told I had cancer back in 2003. Come to think of it, every time they told me it was back, didn't freak out either. I don't think that is normal. Could I be off my rocker? Well, I don't own a rocker so yeah, I could be. But I don't think so.
I mean really, in reality I already knew. A lump on the back of my left thigh grew from a golf ball size to about a cantaloupe well, it is kinda obvious. Then having the manager of the store you are working at notice your leg because the left pant leg was getting tighter on the thigh helped, she actually threatened me!! She told me if I didn't go see a doctor the next morning (I worked 2nd shift) I shouldn't bother coming in until I saw a doctor and had a note from them!
Well, me being me, and just getting insurance, I got my fat butt to the Urgent Care on York Road. They told me put one of those wonderful gowns on, and when the doctor came in she asks, in a rather bored, condescending tone - "What is the matter? How can I help you?" I just stood up and showed her the left thigh, OMG, when I turned around I was looking in a mirror, and her face just dropped. "You need a specialist. We will find one in your network and make the appointment for you as soon as possible." Well, if that doesn't all that doesn't give you a clue nothing will.
No, I didn't cry or scream or ask "why me", each time I asked, "OK, what are we going to do, when do we start, don't sugar coat crap, and be honest. I don't need the kid gloves treatment."
Luckily, all of the doctors I have and had understand where I am coming from. I have no idea where I get my tenacity or strength as some people call it from.
Don't get me wrong, chemo is awful. Even the "milder" chemo that people can take orally have side effects. The antibody chemo I was on gave me 5 or 6 days of exhaustion right off the bat, killed the taste buds, nausea. Still killed the bone marrow so red blood cell production was down, white cell too. Never mind it let the cancer spread.
The current chemo Yolandis (from the sea sponge) is every three weeks, and it takes a week to 10 fays to get back to an "almost" normal. Side effects that get to me are rapid heart beat, like a pounding in your chest when you do just about anything, and interferes with breathing. Sucks having sound like I ran a mile just walking up a set of stairs.
Right now I feel great. My doctor changed my schedule to every 6 weeks rather than every 3. Mainly just for the summer so I can enjoy as much of it as possible, and stay out of the hospital. Though those two pints of blood may have just helped my system out a bit too.
Radiation in 2003 sucked a$$. The burn on the back of my leg was purple, oozed, and burned. I learned the hard way that Solarcaine does nothing but make the burn worse on radiation burns. Trust me.
I dreaded having to get radiation in 2011 because it was on the sternum, bra and the such rubbing a radiation burn. Guess what? They improved how radiation is given and they can pinpoint it now. My burn was the size of a dime!!
A challenge has been given me several times, and my response is "I will not go quietly into the night."
Now here is the oddity for me. Whenever I have cancer, my nails grow. I mean nails I can put polish on and have people compliment. I do house work and do not baby my hands, but I have nails! Every time I had cancer, my nails are awesome till I get tired of them and cut them off and they grown right back.
So why do my nails grow so well when I am given such nasty drugs? And why when I am healthy, not on chemo are my nails always breaking off or not growing?
I mean really!!
I mean really, in reality I already knew. A lump on the back of my left thigh grew from a golf ball size to about a cantaloupe well, it is kinda obvious. Then having the manager of the store you are working at notice your leg because the left pant leg was getting tighter on the thigh helped, she actually threatened me!! She told me if I didn't go see a doctor the next morning (I worked 2nd shift) I shouldn't bother coming in until I saw a doctor and had a note from them!
Well, me being me, and just getting insurance, I got my fat butt to the Urgent Care on York Road. They told me put one of those wonderful gowns on, and when the doctor came in she asks, in a rather bored, condescending tone - "What is the matter? How can I help you?" I just stood up and showed her the left thigh, OMG, when I turned around I was looking in a mirror, and her face just dropped. "You need a specialist. We will find one in your network and make the appointment for you as soon as possible." Well, if that doesn't all that doesn't give you a clue nothing will.
No, I didn't cry or scream or ask "why me", each time I asked, "OK, what are we going to do, when do we start, don't sugar coat crap, and be honest. I don't need the kid gloves treatment."
Luckily, all of the doctors I have and had understand where I am coming from. I have no idea where I get my tenacity or strength as some people call it from.
Don't get me wrong, chemo is awful. Even the "milder" chemo that people can take orally have side effects. The antibody chemo I was on gave me 5 or 6 days of exhaustion right off the bat, killed the taste buds, nausea. Still killed the bone marrow so red blood cell production was down, white cell too. Never mind it let the cancer spread.
The current chemo Yolandis (from the sea sponge) is every three weeks, and it takes a week to 10 fays to get back to an "almost" normal. Side effects that get to me are rapid heart beat, like a pounding in your chest when you do just about anything, and interferes with breathing. Sucks having sound like I ran a mile just walking up a set of stairs.
Right now I feel great. My doctor changed my schedule to every 6 weeks rather than every 3. Mainly just for the summer so I can enjoy as much of it as possible, and stay out of the hospital. Though those two pints of blood may have just helped my system out a bit too.
Radiation in 2003 sucked a$$. The burn on the back of my leg was purple, oozed, and burned. I learned the hard way that Solarcaine does nothing but make the burn worse on radiation burns. Trust me.
I dreaded having to get radiation in 2011 because it was on the sternum, bra and the such rubbing a radiation burn. Guess what? They improved how radiation is given and they can pinpoint it now. My burn was the size of a dime!!
A challenge has been given me several times, and my response is "I will not go quietly into the night."
Now here is the oddity for me. Whenever I have cancer, my nails grow. I mean nails I can put polish on and have people compliment. I do house work and do not baby my hands, but I have nails! Every time I had cancer, my nails are awesome till I get tired of them and cut them off and they grown right back.
So why do my nails grow so well when I am given such nasty drugs? And why when I am healthy, not on chemo are my nails always breaking off or not growing?
I mean really!!
Tuesday, May 22, 2018
Walking Through the Past - or Stupid Shit I Believed
Dealing with cancer gives you the opportunity to walk down memory lane, perhaps more than any one person would want to. It can make you remember some of the oddest things, and make you say, "Huh, maybe that has a bit to do with how I am".
Now, I am not going to get into the "feel sorry for me" or the "abused" story. Life was not easy for my brothers or sisters, nor myself. But that is past, and I have come to terms, a sort of peace if you will. My parents did the best they could considering their lives, I determined to do better and end cycles. Now I understand where some of my issues came from. I have no problems speaking about my past, but it is a different conversation.
BUT you know the stupid shit we were told, that some of us believed, now that is another story!! So is the stupid shit we did.
I have not a clue what made me think of some of this, maybe part of it is trying to find the family tree. It is spider webbing out in a couple of directions, but as far as my father's family, it is stagnant.
OK, I freely admit my parents were "older" (Dad 55 and mom 35) and raised with different values, hence, I have had some values I needed to re-learn over the years. Trust me it has taken years for some.
What am I talking about? How about that old saying "A woman's place is in the home." Yeah, I was raised with that one. Seriously. I learned to cook really young. I remember being 5 and scrambling eggs. I still have issues with eggs to this day. They have to be just about "perfect" (my idea of perfect" before I can eat them. A little brown on them? NOPE. A little bit of the egg white kind of jelly like slime? ABSOLUTELY NOT! Brown on an over medium egg? NO. Over hard? Nope. Over medium if you please, not a speck of brown on the edges, yolk perfect for dunking, and absolutely no snotty white.
I learned to cook, and to clean. Do laundry. I learned how to iron clothing, and how to not put too much starch. I was being raised to be little Suzy Homemaker. Never could get the hang of gardening though. But in my defense, when my mom thought learning how to grow vegetables was a good thing, I had no interest. To be honest, neither did she. They just opened Neff Pool, a public pool for the neighborhood. I'd rather be in the water in the summer. Thank you very much!
So getting back to the "woman's place is in the home" thing. My parents didn't believe that an education was all that important. In elementary school, I wasn't allowed to do homework. That was fine by me, I hated it. All the teachers were really old, older than I am now, and one of them farted lots. I remember her being bent over helping one student her butt all near this kid's face and she let one go. He threw up.
I was a Tom Boy. I climbed trees, rode my "English Racer" bike at top speed trying to stand on the handle bars (yeah, that didn't work out too well, but it didn't stop me either). I wanted to play base ball with the boys. I collected baseball cards. My dad would show me things in the car engine. But all that time I was still learning the how to be a good housewife stuff. Hell, my Dad taught me to fight. I was to defend my younger sister and brother, and if I was in a fight - I better damn well have won.
In Junior High, Margaret Spellacy, the dress code changed. (Yes there was a dress code, and girls could not wear pants at all. Only dresses and skirts) Girls were allowed to wear JEANS!! Can you say HEAVEN? Dress shirts, but jeans!!!!
From that day forward, I wore only jeans. Until one day in high school, my mom threw out all my jeans. I needed to start acting like a "lady" and dress that way. (Don't worry, I ended up with jeans again)
Back on track, no being encouraged for college was not on the table. Hell, it was a HUGE deal I graduated high school! I was encouraged to become a "legal" secretary. Why the hell a legal secretary I have no idea, I wanted nothing to do with law. You do remember that "Tom Boy" thing? Never really grew out of it. Parents couldn't beat it out of me either - I mean come on really? Remember the teaching me to fight?
I was encouraged to do, become a secretary. At the ripe old age of 17 I was entering the work force as a secretary. Do your job, get your boss's coffee, don't complain, meet your husband, stop working when you have a baby, and have another baby. Let's just say I was very conflicted.
I always had a problem with that coffee thing. But here is what I was ALWAYS told:
"SECRETARIES SHOULD LOOK LIKE LADIES. LOOK LIKE MODELS. WEAR MAKEUP ALL THE TIME. NEVER WEAR PANTS, DRESSES AND SKIRTS." Oh yeah, I didn't swear around my parents. But...….
Do you know what kind of crap that is? I actually did that too! Perfect make up every day. I did that crap for years. Hell, I worked at a place where if a female had short hair she wouldn't get promoted. When I bought work clothes they were always business dressy. Neat, simple lines. Looked good.
God I can see me as a 17 year old in my first couple of jobs. Naïve as all get out too, seriously you can be naïve and have common sense, or at least there were time I did. I got fired from a job because I laughed and joked with the installers. Never mind it was in front of everyone. Nothing inappropriate either. But I have had jobs where I was made uncomfortable because of the double standard of behavior. My answer? Quit without notice as soon as you find another job, or just quit. Then damage the car and not get caught.
If I had encouragement to go to college out of high school, would I have? Probably. Did I know what I wanted out of life? Hell to the no. What 17 year old does. Oh, and the only reason I waited till I was 17 to graduate was if I had graduated at 16 I would have needed a work permit and could only work part time. Besides, who the hell would higher a 16 year old for a job with benefits?
If I could change things would I? ABSOLUTELY NOT!! All that has happened to me in the past, the good, the bad, the horrid made me who I am. All the stuff that made those scars I wear so proudly made me.
It has been a long road to get to who I am today, and I really actually like myself. In fact I love myself. You have to be able to love yourself and value yourself before you can truly love and value others. Oh, and that includes having cancer. I would not change having it. It truly has been a double edged sword.
On one hand it has taught me I am stronger than I know. I have more friends than I realized. That my children love me, even when I was broken they loved me. It has also taught me I cannot go through this alone. I need you all. I am grateful for you all.
The other hand, it has shown my weakness. I have a hard time with that. It has shown me I cannot always be strong for everyone. I cannot always hold my head up and fight or jump on the white charger and save the world. Which I have a hard time with. Such a hard time I hide. I withdraw. I am learning not to be such a ninny, but it will take work.
So what stupid shit were you told? What did you believe? Would you change it?
Now, I am not going to get into the "feel sorry for me" or the "abused" story. Life was not easy for my brothers or sisters, nor myself. But that is past, and I have come to terms, a sort of peace if you will. My parents did the best they could considering their lives, I determined to do better and end cycles. Now I understand where some of my issues came from. I have no problems speaking about my past, but it is a different conversation.
BUT you know the stupid shit we were told, that some of us believed, now that is another story!! So is the stupid shit we did.
I have not a clue what made me think of some of this, maybe part of it is trying to find the family tree. It is spider webbing out in a couple of directions, but as far as my father's family, it is stagnant.
OK, I freely admit my parents were "older" (Dad 55 and mom 35) and raised with different values, hence, I have had some values I needed to re-learn over the years. Trust me it has taken years for some.
What am I talking about? How about that old saying "A woman's place is in the home." Yeah, I was raised with that one. Seriously. I learned to cook really young. I remember being 5 and scrambling eggs. I still have issues with eggs to this day. They have to be just about "perfect" (my idea of perfect" before I can eat them. A little brown on them? NOPE. A little bit of the egg white kind of jelly like slime? ABSOLUTELY NOT! Brown on an over medium egg? NO. Over hard? Nope. Over medium if you please, not a speck of brown on the edges, yolk perfect for dunking, and absolutely no snotty white.
I learned to cook, and to clean. Do laundry. I learned how to iron clothing, and how to not put too much starch. I was being raised to be little Suzy Homemaker. Never could get the hang of gardening though. But in my defense, when my mom thought learning how to grow vegetables was a good thing, I had no interest. To be honest, neither did she. They just opened Neff Pool, a public pool for the neighborhood. I'd rather be in the water in the summer. Thank you very much!
So getting back to the "woman's place is in the home" thing. My parents didn't believe that an education was all that important. In elementary school, I wasn't allowed to do homework. That was fine by me, I hated it. All the teachers were really old, older than I am now, and one of them farted lots. I remember her being bent over helping one student her butt all near this kid's face and she let one go. He threw up.
I was a Tom Boy. I climbed trees, rode my "English Racer" bike at top speed trying to stand on the handle bars (yeah, that didn't work out too well, but it didn't stop me either). I wanted to play base ball with the boys. I collected baseball cards. My dad would show me things in the car engine. But all that time I was still learning the how to be a good housewife stuff. Hell, my Dad taught me to fight. I was to defend my younger sister and brother, and if I was in a fight - I better damn well have won.
In Junior High, Margaret Spellacy, the dress code changed. (Yes there was a dress code, and girls could not wear pants at all. Only dresses and skirts) Girls were allowed to wear JEANS!! Can you say HEAVEN? Dress shirts, but jeans!!!!
From that day forward, I wore only jeans. Until one day in high school, my mom threw out all my jeans. I needed to start acting like a "lady" and dress that way. (Don't worry, I ended up with jeans again)
Back on track, no being encouraged for college was not on the table. Hell, it was a HUGE deal I graduated high school! I was encouraged to become a "legal" secretary. Why the hell a legal secretary I have no idea, I wanted nothing to do with law. You do remember that "Tom Boy" thing? Never really grew out of it. Parents couldn't beat it out of me either - I mean come on really? Remember the teaching me to fight?
I was encouraged to do, become a secretary. At the ripe old age of 17 I was entering the work force as a secretary. Do your job, get your boss's coffee, don't complain, meet your husband, stop working when you have a baby, and have another baby. Let's just say I was very conflicted.
I always had a problem with that coffee thing. But here is what I was ALWAYS told:
"SECRETARIES SHOULD LOOK LIKE LADIES. LOOK LIKE MODELS. WEAR MAKEUP ALL THE TIME. NEVER WEAR PANTS, DRESSES AND SKIRTS." Oh yeah, I didn't swear around my parents. But...….
Do you know what kind of crap that is? I actually did that too! Perfect make up every day. I did that crap for years. Hell, I worked at a place where if a female had short hair she wouldn't get promoted. When I bought work clothes they were always business dressy. Neat, simple lines. Looked good.
God I can see me as a 17 year old in my first couple of jobs. Naïve as all get out too, seriously you can be naïve and have common sense, or at least there were time I did. I got fired from a job because I laughed and joked with the installers. Never mind it was in front of everyone. Nothing inappropriate either. But I have had jobs where I was made uncomfortable because of the double standard of behavior. My answer? Quit without notice as soon as you find another job, or just quit. Then damage the car and not get caught.
If I had encouragement to go to college out of high school, would I have? Probably. Did I know what I wanted out of life? Hell to the no. What 17 year old does. Oh, and the only reason I waited till I was 17 to graduate was if I had graduated at 16 I would have needed a work permit and could only work part time. Besides, who the hell would higher a 16 year old for a job with benefits?
If I could change things would I? ABSOLUTELY NOT!! All that has happened to me in the past, the good, the bad, the horrid made me who I am. All the stuff that made those scars I wear so proudly made me.
It has been a long road to get to who I am today, and I really actually like myself. In fact I love myself. You have to be able to love yourself and value yourself before you can truly love and value others. Oh, and that includes having cancer. I would not change having it. It truly has been a double edged sword.
On one hand it has taught me I am stronger than I know. I have more friends than I realized. That my children love me, even when I was broken they loved me. It has also taught me I cannot go through this alone. I need you all. I am grateful for you all.
The other hand, it has shown my weakness. I have a hard time with that. It has shown me I cannot always be strong for everyone. I cannot always hold my head up and fight or jump on the white charger and save the world. Which I have a hard time with. Such a hard time I hide. I withdraw. I am learning not to be such a ninny, but it will take work.
So what stupid shit were you told? What did you believe? Would you change it?
Friday, April 20, 2018
Why I Don't Look Up to Celebrities Who have/had Cancer
I really shouldn't watch some TV shows. Why? They make me think more. They make me question.
Well, what does that have to do with the title of this?
Celebrities have money. Rich and famous people. I don't wish cancer on anyone, but I would rather hear about the construction worker making ends meet, dealing with cancer, or the mom that over comes cancer and still goes on. People like me.
People going through things I have and beating it. That gives me inspiration. Not some famous actor or actress that gets paid hundreds of thousands of dollars to do a show or movie. Not some rich Silicone Valley big wig, or even anyone on Congress.
It was either 60 minutes or 48 hours, they did a segment on cancer. It was a fluke I ended up watching it. Actually, I have seen a few stories along these lines.
The story was basically about treatments available, insurance, and money. The all mighty green back. The bane of the terminally ill.
They did a few interviews. One was a normal person, like you or I. Worried about how they are going to pay bills, insurance, co payments. The hope was dim.
The other family was rich. Their son has cancer. Being treated at the best hospital. The reporter asked how they were dealing with their son's cancer. Does having money help? Their answer? Yes it does. It opens more avenues of treatment. It allows for better treatment. It gives more hope.
Huh, even they realize it. So I'll pass on the celebrities, and admire folks like me. Folk I can identify with. Don't get me wrong, celebrities can help with education, some people will only listen to them. But me, I'm for the "normal" guy. Let me hear their stories.
Then I got caught up with a show called The Resident. Yeah, it played right into the if you have money you have a better chance.
I would highly recommend catching up on the show. It is a show that is more than the normal hospital shows. It gets into some of the politics of hospitals, like insurance company issues, how much per bed they want to make, shady dealings, you have to watch it. Many different layers.
This one isn't very well written, but hopefully it gets you thinking too.
Well, what does that have to do with the title of this?
Celebrities have money. Rich and famous people. I don't wish cancer on anyone, but I would rather hear about the construction worker making ends meet, dealing with cancer, or the mom that over comes cancer and still goes on. People like me.
People going through things I have and beating it. That gives me inspiration. Not some famous actor or actress that gets paid hundreds of thousands of dollars to do a show or movie. Not some rich Silicone Valley big wig, or even anyone on Congress.
It was either 60 minutes or 48 hours, they did a segment on cancer. It was a fluke I ended up watching it. Actually, I have seen a few stories along these lines.
The story was basically about treatments available, insurance, and money. The all mighty green back. The bane of the terminally ill.
They did a few interviews. One was a normal person, like you or I. Worried about how they are going to pay bills, insurance, co payments. The hope was dim.
The other family was rich. Their son has cancer. Being treated at the best hospital. The reporter asked how they were dealing with their son's cancer. Does having money help? Their answer? Yes it does. It opens more avenues of treatment. It allows for better treatment. It gives more hope.
Huh, even they realize it. So I'll pass on the celebrities, and admire folks like me. Folk I can identify with. Don't get me wrong, celebrities can help with education, some people will only listen to them. But me, I'm for the "normal" guy. Let me hear their stories.
Then I got caught up with a show called The Resident. Yeah, it played right into the if you have money you have a better chance.
I would highly recommend catching up on the show. It is a show that is more than the normal hospital shows. It gets into some of the politics of hospitals, like insurance company issues, how much per bed they want to make, shady dealings, you have to watch it. Many different layers.
This one isn't very well written, but hopefully it gets you thinking too.
Tuesday, March 6, 2018
What does Terminal Look Like?
I am in a very interesting position. I have cancer and I am terminal. Yes, it is. It is amazing to my how many people have preconceived ideas on what a terminal cancer patient should look like. Or for that matter what a cancer patient looks like.
There are many of us that do not fit those preconceived ideas, we almost look normal. Whatever normal is. I don’t fit into any of those preconceived ideas.
There are many of us that do not fit those preconceived ideas, we almost look normal. Whatever normal is. I don’t fit into any of those preconceived ideas.
What do I mean preconceived? Well here are a few thing I have people tell me.
People who have cancer and are
getting chemotherapy are bald.
No. Absolutely not. Chemotherapy drug are harsh. They kill cells. Both healthy and cancerous. But not all people go bald. In fact, there are some therapies put into
use right now that actually help the patient keep their hair. It is cold therapy. Not everyone is able to use it, and it may
not work for as well for every patient.
But for those who losing their hair would be horrifying, it gives them
options. Some people only have their
hair thin out. One year my eyelashes fell out along with all my hair. That was hard to deal with. I like my eyes. My eyelashes are my vanity.
That was my experience with the antibody chemo
therapy - thinning hair. I hated it. I’d rather be bald. I kept my hair buzzed. To me it is better to
be bald rather than have balding spots or thinning hair.
All cancer patients are
always sick and vomiting or at least nauseated.
When I went through cancer in
2003 I would have said this is the truth.
But over the years they have made huge leaps in anti-nausea drugs.
Don’t get me wrong.
We still, well not everyone, but I still get nauseated. But the anti-nausea drugs work wonders. There are even what they call “break through”
anti-nausea drugs. Basically, they are a
medication you take when your normal medication does not stop the nausea, and
you feel like vomiting up dinner from last year.
Cancer patients don’t
eat.
Well, the further on in your chemo,
some may not want to eat. Some don’t eat
early on because of sores that can developed in the mouth and throat. Believe me when we feel like eating, we
eat. Mainly because we know there are
those days we don’t feel like it, or will feel like crap.
I have days when every couple of hours I am eating
something. Doesn’t matter to me healthy
food or not. Calories. That is all I am trying to get into my
system. I know there will be days I don’t want to eat, or eat very little. So, when I can I do. My body will store it and when I need it I
will have it. Unfortunately, there never
is enough stored.
In fact, once this is published, I am going to have pumpkin pie.
All cancer patients are extremely thin.
Um. No. Depending on the treatment, and the amount of
steroids given. Yes. Steroids are routinely given to cancer
patients. Helps with some of the side
effects. Unfortunately, because of the
different body types and reactions, some people swell up. For those patients it is heart breaking. I have no idea why it happens. It just does.
Not all patients are deathly thin either. Some may get to that point later in
treatment. But not all. Everything depends on the drugs used (if they
treat with drugs) and again the body’s reaction.
All cancer patients are tired all the time.
Well, there is some truth in that. But not 100% of the time. Depending on the chemotherapy, and cycle, a
patient can feel exhausted one week, tired the next, and almost normal the
following.
One of my treatments a few years ago was the MAIDS
treatment. Chemo for a week, then two
weeks off during which I received radiation therapy. First week I felt like crap, second
better. When the time for chemo came
around again, I felt pretty normal.
Later maybe cycle 4 or 5 I would be tired. Exhausted all the time by cycle 6.
Terminal patients look like the dead walking.
Well, maybe nearing the end, and some prior
to but not all. Just because I don't look half dead doesn't mean a thing.
Cancer patients are sick all the time or should always wear masks and stay away from everyone.
Not all the time. We are more susceptible to getting sick if the chemotherapy kills off our white cells, or interferes with the production of the red blood cells,
Usually when that happens, we end up in the hospital, but not all the time. A couple of times my blood counts were way down, but I felt fine, even felt almost "normal".
When the blood counts are normal for the most part we are normal.
Cancer patients are always depressed.
No. Not all the time. Yes, there are times we get depressed. It is only normal. It gets tiring having blood taken, running to the doctor, treatments, hospital visits, MRIs, CT Scans and the such.
I prefer to laugh and go out and enjoy life, but yes, even I get depressed once in awhile.
I am terminal. For
six months I received anti-body chemo therapy. Every other week. My hair got
thinned out, so I buzz cut it. I’d feel
good the day after. But then for about three days I’d be tired. The further along in the cycles, the longer
the tiredness lasted. Lack of appetite
usually comes from the way chemo affected the taste buds. Everything ends up feeling yuk, and
tasteless.
We have changed my chemo to Yolendes. Sea sponge derivative. I have had one cycle. I get chemo for 24 hours. I go home with a working pump, go back the
next day and have it removed. The day
after I feel good. Again, those
steroids. The third day I start feeling,
sick. Like a cold or flu. Then it gets worse for about three or four
days. Gets better after that. Exhaustion so bad that getting out of bed is
a feat in itself. Eating? No thank you.
Drinking? Sipping water every so
often but not enough.
Chemo affects the production of white blood cells. When I was on the Anti-body I got
Neulasta. I prefer the Neaulasta and its issues to the shots. Nupegen shots burn like hell.
They skipped my second round of chemo with the sea
sponge. Because the chemo made my white
cells crash. If you do not have a good
blood count, they don’t do chemo. They
would be endangering your life if they did.
I assume it is the same way with all chemo.
I spent a few days in the hospital because of pneumonia, and it was after chemo. The doctors at the ER were spazzing out because my counts kept dropping. I kept telling them it was the chemo treatment. They finally decided that a blood transfusion would be a good idea. They actually do help. Bumps up the red count.
I get told you can’t be terminal. You look good. Your skin is in good shape. You don’t look sick. I have had three weeks to recover from that
treatment, so I look better. The further
into treatment I get the longer the side effects will last, and I will end up
fitting that image people have of terminal. Well, maybe.
But I plan on doing things my way. Treatment is to slow the cancer, or keep it
in place. It won’t cure it. I am going for the quality of life. If the chemo lets the cancer spread. We are onto the next one. If the time spent recovering becomes longer, or my system starts crashing and I end up in the hospital more, the treatment changes. Or I just stop chemo totally. Boy, then I will end up fitting that image.
Please, just because a cancer patient doesn’t look like a
dead man walking, don’t assume they are lying, or exaggerating. Just because we laugh, and joke and look
strong, don’t assume. Cancer patients
are great actors and actresses. I know.
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