This post will be rambling. I'll warn you. My thoughts on it aren't organized and that feeling of have to get it down isn't there. But maybe I will be able to get it going.
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.
Next thing I know Mission BBQ is knocking at my door with food!! I know I had a dumb look on my face. All I could think of was I some how ordered BBQ in my sleep. The young lady told me, no it was a gift from the Mission BBQ on Garrisonvile Road. I was able to eat BBQ for dinner that night, lunch and dinner the next two days!! The post office also showed up, again, this time with two trays of cards.
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.
Wednesday, I was literally counting the minutes left because of everything. Then around 6:30 PM people started showing up in the front yard. Around 70 of them!! All of them were there to sing me Christmas Carols! Then the Fire Department showed up with a truck and an ambulance, bringing Santa to see me!! I felt like crying I was so touched, happy, amazed that all these people did this for me, someone they don't know. Someone who has been hiding the past year plus. I kept telling myself I can't cry because I cry really ugly. But I really wanted to.
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!
To say I was overwhelmed would put it very lightly. I have gotten cards from Thailand, Taiwan, England, Kenya, Scotland, Ireland, Norway, Finland, Switzerland, Germany, France, Italy, Korea, New Zealand, Australia, Sweden, Ukraine, Cech Republic, Egypt, Spain, Hong Kong, and even ANTARCTICA!! Plus every state in the United States.
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.
My view of going through cancer a 2nd, I mean 3rd, uh 4th time (Ah heck, forget the counting) Come laugh with me on my journey.
Showing posts with label survivor. Show all posts
Showing posts with label survivor. Show all posts
Monday, January 6, 2020
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
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
![]() |
| 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.
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Saturday, August 18, 2018
Face Your Fears
I know I know, it is easier said than done, but at least try!
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.
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Friday, February 10, 2017
Dance Six continues.....
Well today was the second treatment with the new antibody chemo drug - Lartuvo by Eli Lilly. It was recently approved by the FDA, it was fast tracked. Guess who is the first one in the area to use it? Yep. You guessed.
I have to be honest, this is the weirdest chemo schedule I have ever been on. Once a week. Every other week is it different too. Thursday is my chemo day. Wednesdays are meet with the doctor and blood levels.
So last week, this was the list of drugs I got:
Decadron (corticosteroid hormone), Benadryl (yep through the IV), Aloxi (anti-nausea drug on steroids), Emend (another anti-nausea on steroids), Latruvo (antibody chemo drug), Doxil (nasty chemo drug), and Neulasta OBI (suppose to support immune system). Five and one half hours. Long day. Oh, and after the Benadryl you do get sleepy.
The two drugs with the most side effects are the Latruvo, and Doxil. Head aches, nausea, diarrhea, constipation, muscle aches, chills, immune system crash, fatigue, oh yeah and hair loss.
Side effects I have been having, fatigue, head ache, the hair is going, nausea, the taste of food is going too. Body aches too. Basically for about four or five days after I feel like I have a bad case of the flu. I still get up every day and go to work.
Oh, it just dawned on me, I work SEVEN (7) days a week. And from working that much (20-30 hours at one job, 10 to 14 hours at the other) and I bring home about $800 to $900 a month net. Life is interesting right now.
Ok, back to the chemo. Today's treatment was the Lartruvo. Did you know they fly in the medications the day before your treatment? I was supposed to get chemo yesterday, but when I was about ten (10) minutes from the office I got a call, the plane the drugs were on had mechanical problems. They didn't get here. So they rescheduled me for today. The total time I was there - a little over two hours. Right now I do feel tired and nauseated.
I'll admit. This time I am a bit concerned about the cancer. I mean, it is Stage IV (been there, done that several times) but it is on the heart and inoperable. All the other times they could operate. Even a couple they operated, and since they got really good margins, no chemo.
So why am I a bit concerned? Well, if this chemo doesn't work, there will be another (new treatment just approved too) and if it doesn't work, there is another, and another. I am concerned about having to continue chemo so long it exhausts me. How many times will I have the strength to go through it? When I am too tired, how do I face my family and friends? Look, I am not giving up, but I have no idea what will happen in the future.
Oh, before I go, any woman going through any type of cancer should check out Cleaningforareason.org - they are a nationwide group that has volunteers that will come in and do a general cleaning to help you out. If they have someone in your area, they will connect you. There is a limit to how many cleanings, four (4) I think, don't quote me. But even that helps.
If you don't need cleaning and want to help, they take donations, and may even be able to use your help.
Time to feed the girls, and take a nap. I really feel beat this time.
I have to be honest, this is the weirdest chemo schedule I have ever been on. Once a week. Every other week is it different too. Thursday is my chemo day. Wednesdays are meet with the doctor and blood levels.
So last week, this was the list of drugs I got:
Decadron (corticosteroid hormone), Benadryl (yep through the IV), Aloxi (anti-nausea drug on steroids), Emend (another anti-nausea on steroids), Latruvo (antibody chemo drug), Doxil (nasty chemo drug), and Neulasta OBI (suppose to support immune system). Five and one half hours. Long day. Oh, and after the Benadryl you do get sleepy.
The two drugs with the most side effects are the Latruvo, and Doxil. Head aches, nausea, diarrhea, constipation, muscle aches, chills, immune system crash, fatigue, oh yeah and hair loss.
Side effects I have been having, fatigue, head ache, the hair is going, nausea, the taste of food is going too. Body aches too. Basically for about four or five days after I feel like I have a bad case of the flu. I still get up every day and go to work.
Oh, it just dawned on me, I work SEVEN (7) days a week. And from working that much (20-30 hours at one job, 10 to 14 hours at the other) and I bring home about $800 to $900 a month net. Life is interesting right now.
Ok, back to the chemo. Today's treatment was the Lartruvo. Did you know they fly in the medications the day before your treatment? I was supposed to get chemo yesterday, but when I was about ten (10) minutes from the office I got a call, the plane the drugs were on had mechanical problems. They didn't get here. So they rescheduled me for today. The total time I was there - a little over two hours. Right now I do feel tired and nauseated.
I'll admit. This time I am a bit concerned about the cancer. I mean, it is Stage IV (been there, done that several times) but it is on the heart and inoperable. All the other times they could operate. Even a couple they operated, and since they got really good margins, no chemo.
So why am I a bit concerned? Well, if this chemo doesn't work, there will be another (new treatment just approved too) and if it doesn't work, there is another, and another. I am concerned about having to continue chemo so long it exhausts me. How many times will I have the strength to go through it? When I am too tired, how do I face my family and friends? Look, I am not giving up, but I have no idea what will happen in the future.
Oh, before I go, any woman going through any type of cancer should check out Cleaningforareason.org - they are a nationwide group that has volunteers that will come in and do a general cleaning to help you out. If they have someone in your area, they will connect you. There is a limit to how many cleanings, four (4) I think, don't quote me. But even that helps.
If you don't need cleaning and want to help, they take donations, and may even be able to use your help.
Time to feed the girls, and take a nap. I really feel beat this time.
Monday, January 16, 2017
It has been awhile - Dance five complete, Dance six to start
Well, the last time I posted, it was to explain my arm tattoo. Since then, spring 2015 they found a tumor in the left lung. You know my good lung.
It was decided that they would do surgery (separate the ribs, remove the tumor), if good margins were obtained, no chemo. They chose to take this route since the last time I had chemo it nearly kill me. Well they got good margins! Surgery on Monday, back to work on Wednesday.
Well since then the contract I had a job under at the Marine Base ended, so I became unemployed. But I have Cobra, for now. October, a small spot showed on the CT Scan. They thought it was a small pocket of fluid, and opted to watch.
November I started having issues breathing. Like a weight on my chest. Some days it was worse than others. Thanksgiving was spent in New Orleans with my kids, and it seemed OK, so I figured that maybe I had just had a chest cold or something. Once I got home, one day it would be OK, the next it wouldn't.
It kept getting worse, and finally after a rough weekend, I figured on Monday I'd call my Family Doctor, and be told I had walking Pneumonia. Well, Monday I felt OK, not perfect but a little better. Tuesday, I felt crappy, so I called. Talking to the appointment clerk, she transferred me to the nurse, I told her I was having a hard time breathing, a weight on my chest. Well, she said go to the Fredericksburg Office to their urgent care, me, I figured, I'd just drive to the hospital near me. Only a few miles away, and I would be able to drive home. Yeah.
The ER doctor came in and the "fluid" area was larger. They wanted to keep me and have radiology put a drain in the lung. OK. After that he came in and tells me that they are going to transfer me to Mary Washington Hospital because they are better equipped to handle my issue, and possible complication. (Translation, my doctors wanted me closer, and the hospital is considered a trauma center).
I met one of the Oncology doctors mine works with, he tells me that they will be following, and talking to the Tumor Board about me the next day. He started talking about Antibody treatment and newer just approved by the FDA treatments. I just dismissed it. All my doctors track me. If one knows something, they are in communication.
Well they put the drain in and no fluid really came out. After a couple days of it, I talked to my Thoracic Surgeon, they want to drain it surgically, me - I am ready to agree to anything as long as I can breath without an elephant on my chest.
Fast forward to after surgery. Talked to the doctor, he said there really wasn't fluid in the lung but pockets on the lung and attached to the heart. Me not really thinking anything worse, cool, I can breath. He got everything he could, and sent it out to several labs for biopsy. Everything they take out of me goes for biopsy.
January 7th. The surgeon is back in town, at 8:00 AM, I get a call from him. Do you have time to talk? Sure! I say in my normal upbeat voice. Then he drops the bomb. The cancer is back. All the doctors know.
January 13th. I had a follow up appointment with the surgeon who did the Whipple, and removed the tumor from my leg. We chatted (yes he already knew) He asks me what plans do I have? Well I want to go to New Orleans for Mardi Gras, but that schedule hinges on treatment, and I'd really like to go to Tuscany, see the Rockies, the Grand Canyon. I want to take a helicopter ride over it and a donkey ride into the canyon if they still do that. He told me do it. Don't let the treatment interfere with doing it. OH OH. When a doctor says that, it is time to be a bit concerned.
Well, I went to the Oncologist office after that, yeah, it is back, it is attached to the heart.
Me: OK, so now what?
Doc: It is inoperable.
Me: Oh. So translate.
Doc: Stage IV, inoperable.
Me: OK, so what is next?
DOC: Antibody treatment, just approved by the FDA, but it is approved with only Adriamycin. Which you had the entire amount allowed. Anymore would damage your heart. But there are alternatives to it; the insurance company will have to approve it.
He wanted to start this week, but everything needs approved by the insurance company. I have a CT scan scheduled Friday to see what it looks like. They need to try to "Router Rooter" my port, and if they can't, replace it. But it all depends on the insurance approval.
Now since I am unemployed, I have Cobra. But my Cobra runs out in March, so in order to get insurance and covered during the Open Enrollment (pre-existing conditions) So, I have an ACA policy that kicks in in February. So one insurance company will approve anything in January, and it will all have to be redone in February.
So I will be shelling out for out of pocket and deductibles on two policies. But at least I won't have to meet the $5500 on Cobra, and the $7000 on the new insurance. Very confusing.
But I am a bit frustrated. I work two part time jobs. Between the two I bring in about $930 a month. More than unemployment, and living off my savings while looking for a job.
ACA said I make too little for a tax credit.
Yes, I am still looking for a job.
It was decided that they would do surgery (separate the ribs, remove the tumor), if good margins were obtained, no chemo. They chose to take this route since the last time I had chemo it nearly kill me. Well they got good margins! Surgery on Monday, back to work on Wednesday.
Well since then the contract I had a job under at the Marine Base ended, so I became unemployed. But I have Cobra, for now. October, a small spot showed on the CT Scan. They thought it was a small pocket of fluid, and opted to watch.
November I started having issues breathing. Like a weight on my chest. Some days it was worse than others. Thanksgiving was spent in New Orleans with my kids, and it seemed OK, so I figured that maybe I had just had a chest cold or something. Once I got home, one day it would be OK, the next it wouldn't.
It kept getting worse, and finally after a rough weekend, I figured on Monday I'd call my Family Doctor, and be told I had walking Pneumonia. Well, Monday I felt OK, not perfect but a little better. Tuesday, I felt crappy, so I called. Talking to the appointment clerk, she transferred me to the nurse, I told her I was having a hard time breathing, a weight on my chest. Well, she said go to the Fredericksburg Office to their urgent care, me, I figured, I'd just drive to the hospital near me. Only a few miles away, and I would be able to drive home. Yeah.
The ER doctor came in and the "fluid" area was larger. They wanted to keep me and have radiology put a drain in the lung. OK. After that he came in and tells me that they are going to transfer me to Mary Washington Hospital because they are better equipped to handle my issue, and possible complication. (Translation, my doctors wanted me closer, and the hospital is considered a trauma center).
I met one of the Oncology doctors mine works with, he tells me that they will be following, and talking to the Tumor Board about me the next day. He started talking about Antibody treatment and newer just approved by the FDA treatments. I just dismissed it. All my doctors track me. If one knows something, they are in communication.
Well they put the drain in and no fluid really came out. After a couple days of it, I talked to my Thoracic Surgeon, they want to drain it surgically, me - I am ready to agree to anything as long as I can breath without an elephant on my chest.
Fast forward to after surgery. Talked to the doctor, he said there really wasn't fluid in the lung but pockets on the lung and attached to the heart. Me not really thinking anything worse, cool, I can breath. He got everything he could, and sent it out to several labs for biopsy. Everything they take out of me goes for biopsy.
January 7th. The surgeon is back in town, at 8:00 AM, I get a call from him. Do you have time to talk? Sure! I say in my normal upbeat voice. Then he drops the bomb. The cancer is back. All the doctors know.
January 13th. I had a follow up appointment with the surgeon who did the Whipple, and removed the tumor from my leg. We chatted (yes he already knew) He asks me what plans do I have? Well I want to go to New Orleans for Mardi Gras, but that schedule hinges on treatment, and I'd really like to go to Tuscany, see the Rockies, the Grand Canyon. I want to take a helicopter ride over it and a donkey ride into the canyon if they still do that. He told me do it. Don't let the treatment interfere with doing it. OH OH. When a doctor says that, it is time to be a bit concerned.
Well, I went to the Oncologist office after that, yeah, it is back, it is attached to the heart.
Me: OK, so now what?
Doc: It is inoperable.
Me: Oh. So translate.
Doc: Stage IV, inoperable.
Me: OK, so what is next?
DOC: Antibody treatment, just approved by the FDA, but it is approved with only Adriamycin. Which you had the entire amount allowed. Anymore would damage your heart. But there are alternatives to it; the insurance company will have to approve it.
He wanted to start this week, but everything needs approved by the insurance company. I have a CT scan scheduled Friday to see what it looks like. They need to try to "Router Rooter" my port, and if they can't, replace it. But it all depends on the insurance approval.
Now since I am unemployed, I have Cobra. But my Cobra runs out in March, so in order to get insurance and covered during the Open Enrollment (pre-existing conditions) So, I have an ACA policy that kicks in in February. So one insurance company will approve anything in January, and it will all have to be redone in February.
So I will be shelling out for out of pocket and deductibles on two policies. But at least I won't have to meet the $5500 on Cobra, and the $7000 on the new insurance. Very confusing.
But I am a bit frustrated. I work two part time jobs. Between the two I bring in about $930 a month. More than unemployment, and living off my savings while looking for a job.
ACA said I make too little for a tax credit.
Yes, I am still looking for a job.
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Saturday, January 31, 2015
The Story of a Tattoo
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| Phoenix in process by Robert V. Black Dragon Tattoo, Urban Md |
For me, tattoos are very personal, not only the image, but the placement too. If I wear a polo shirt or a 3/4 sleeve shirt, 98% of it is covered. Just a bit of color peaks out, which can pull questions out of people. They represent a multi layered story. They are part of my life. Each one has multiple layers of meaning behind it. The only way to know why I have it is to ask, and be willing to listen and try to understand from my point of view, not yours.
So, why this one? Why say Fuck Cancer, I beat it IIII times? Because beating cancer is a multi layered thing to me. And to me beating it is not the same as defeating it.
On the most obvious level, I beat it physically, with the help of my family, friends, and prayers. Many, many prayers and candles being lit. Many prayers by those of all faiths. Christian, Protestant, Catholic, Jewish, Muslim, Wiccan. Each and every one greatly appreciated, and have touched me in more ways than the reader can understand.
On a less obvious level, I wanted something to look at to remind me of that. Every time I look at my tattoo, I remember, and I give thinks for my family and friends. About now you are asking yourself, "Why would you need something to remind yourself of that experience?" Because, I am human. Being human, things can become just a part of the background. Part of the memory bank that gets visited once in awhile.
How can you forget that experience you ask? You don't forget it, not in reality, it is always there, but you can become compliant in the fact it is in the past, and fall into old ways. I don't want to do that. I don't want to take life, and the support of friends and family for granted.
Another level, I want to encourage people to ask questions. It already has. I was at a coffee shop reading my Kindle (love my Kindle, but the battery isn't holding the charge as long). Yes, I had the sleeve rolled up, just put lotion on it. A young woman came up and commented on it, then started talking to me about cancer, she was just diagnosed with Stage I breast cancer and she was scared. We chatted for awhile, I listened to her, and when she got up to leave, she felt better, and decided that she was going to get involved with a support group for breast cancer patients/survivors.
Another layer, and this is one that is very personal, and no matter how many prayers and help I have received from my family and friends, I had to deal with on my own. No one on this earth can help you deal with your own mortality and the fact that cancer is a very intricate part of my life.
You see, because of the type of cancer I get/have it isn't a matter of if it comes back, it is a matter of when. I have to accept it, I have to embrace it. Cancer is a part of me. Cancer and I will dance through the rest of my life. Cancer and I will box, go round and round with it.
I didn't defeat Cancer, but I beat is so far in four rounds.
No one wants to die. Me included. There is way too much out there to see and do. I have accepted my permanent dance with cancer.
So every time I see that tattoo, I remember that fearing what maybe is stealing what can be. Stealing my joy, stealing my life.
Look, like I said I am human. Yes, I need reminders. Winter especially. I hate winter. I tend not to go out in the cold. I don't like it one bit. I miss the sun, I miss the heat of the sun. The leaves on the tree. It is very easy to start to forget things when it is cold, dark and depressing outside. It is very easy to just sit with a warm blanket, books, hot chocolate, and let life pass me by. Not do a thing. I don't want to fall into that. Although once in awhile I will admit to it.
My tattoo wasn't something I did on the spur of the moment. I thought long and hard about what I wanted and what it would say. Even after I found the right tattoo artist to do the piece. I thought long and hard. After talking to my son, and finding that he thought it was a good idea, I talked to the artist and saw the design and knew that, yes, this was the right thing for me.
So no it wasn't vanity, hubris, or ego. I'm not spitting in fate/s face and being defiant. But the opposite. A reminder to humble and to be grateful, for without many, many things that cannot be listed but are represented in the tattoo, I would not have be able to rise from the ashes and continue to be who I have become.
Make sense?
Phoenix by Robert , Black Dragon Tattoo, Uraban, Md
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Tuesday, April 1, 2014
Biopsy, surgery, waiting on the May Clinic to decide what is next
February 18 I had a biopsy done. The doctor and nurses were really nice. They were explaining what they were going to do, and I told them don't sweat it, this ain't my first rodeo. Which made them go huh? Then ask what I meant, I told them.
They used an ultra sound, and what I thought was a tumor that wasn't too large, turned out to be the size of a golf ball. Did I mention that before? Remember sometimes I get lost in the ideas that run through my muddled brain. I didn't even have to see to know it was larger, when the doc says, no needle aspiration, we are taking tissue samples, it kind of lets you know it is bigger than you thought.
So he numbs me up, gets the clippers, and takes four cuttings. The loud snap of the thing is rather funny. No I didn't feel a thing, and watching the ultra sound screen was interesting. Got that done, then it is hurry up and wait.
Close to two weeks later I am in the surgeons office, being asked when do you want to get this done. My answer - tomorrow? I even got the choice if I wanted to do a hospital stay or do it as an outpatient. Since the outpatient surgery suite is at the hospital, if anything goes funny I'm right there, but if everything goes well, I can just go home. Sounds like a plan to me.
He said that the ultra sound images looked good for a total removal with good margins. So we scheduled surgery for March 18th.
Oh, yeah it was a retroperitoneal sarcoma, high grade, although today he said that the preliminary findings from the Mayo Clinic made it higher, I think that just translates into it is very aggressive and is poorly differentiated or undifferentiated. Basically that translates into it has no real pattern it just grows, no cell organization to speak of.
So now they want to get the entire report back go through it and decide if radiation would be a course to go after. Trying to keep chemo off the table since I crash and burn so fast. Doctor Vaughn is going to bring it up at the tumor board. Who knows, maybe yes and maybe no.
I can walk without a problem, oh the margins are negative, so that is good. There is a good portion of my right thigh that are numb. Literally stick a pin in and I don't feel it numb. Some of the smaller nerves may heal, but again, that is a who knows.
I did find out one thing, I have been abusing it. Started yoga, again, figured gentle stretches, would be good, and my body need the exercise like you wouldn't believe.
Wrestling with two pit bulls wasn't a smart idea either, had Sasha flipped over and was holding her and Bailey comes over and lands two paws on the incision. I feel a tearing, ouch, ouch, the feeling of hot liquid. I thought damn I ripped open the incision. Nope, but I did cause some damage that cause it to bleed under the skin and seep fluid under the skin. The body will reclaim the fluid, but it will take a while and I will have to not abuse the leg for a bit. Although he didn't say not to do yoga.
Oh, and Doctor Vaughn told me that I will be seeing him every three months and getting scans every 6. I'll never be cancer free, only waiting until the next eruption. Could be a week could be a few years, but it is always going to be there.
And that is the news from this little spot in the world.
They used an ultra sound, and what I thought was a tumor that wasn't too large, turned out to be the size of a golf ball. Did I mention that before? Remember sometimes I get lost in the ideas that run through my muddled brain. I didn't even have to see to know it was larger, when the doc says, no needle aspiration, we are taking tissue samples, it kind of lets you know it is bigger than you thought.
So he numbs me up, gets the clippers, and takes four cuttings. The loud snap of the thing is rather funny. No I didn't feel a thing, and watching the ultra sound screen was interesting. Got that done, then it is hurry up and wait.
Close to two weeks later I am in the surgeons office, being asked when do you want to get this done. My answer - tomorrow? I even got the choice if I wanted to do a hospital stay or do it as an outpatient. Since the outpatient surgery suite is at the hospital, if anything goes funny I'm right there, but if everything goes well, I can just go home. Sounds like a plan to me.
He said that the ultra sound images looked good for a total removal with good margins. So we scheduled surgery for March 18th.
Oh, yeah it was a retroperitoneal sarcoma, high grade, although today he said that the preliminary findings from the Mayo Clinic made it higher, I think that just translates into it is very aggressive and is poorly differentiated or undifferentiated. Basically that translates into it has no real pattern it just grows, no cell organization to speak of.
So now they want to get the entire report back go through it and decide if radiation would be a course to go after. Trying to keep chemo off the table since I crash and burn so fast. Doctor Vaughn is going to bring it up at the tumor board. Who knows, maybe yes and maybe no.
I can walk without a problem, oh the margins are negative, so that is good. There is a good portion of my right thigh that are numb. Literally stick a pin in and I don't feel it numb. Some of the smaller nerves may heal, but again, that is a who knows.
I did find out one thing, I have been abusing it. Started yoga, again, figured gentle stretches, would be good, and my body need the exercise like you wouldn't believe.
Wrestling with two pit bulls wasn't a smart idea either, had Sasha flipped over and was holding her and Bailey comes over and lands two paws on the incision. I feel a tearing, ouch, ouch, the feeling of hot liquid. I thought damn I ripped open the incision. Nope, but I did cause some damage that cause it to bleed under the skin and seep fluid under the skin. The body will reclaim the fluid, but it will take a while and I will have to not abuse the leg for a bit. Although he didn't say not to do yoga.
Oh, and Doctor Vaughn told me that I will be seeing him every three months and getting scans every 6. I'll never be cancer free, only waiting until the next eruption. Could be a week could be a few years, but it is always going to be there.
And that is the news from this little spot in the world.
Thursday, February 20, 2014
Not Even a Year
Ah fuck, it is back and I didn't even get a fucking year off from it.
That is what I thought when I first felt the small lump back in December. Not even a year. I didn't even get a fucking year. OK, let me give you a brief back story.
Second week, or the third week of December I was sitting on the pot taking a leak, (you didn't expect me to be all prim and proper did you?) and my right hand (get your mind out of the gutter) was laying on my right thigh, and I thought I felt "something". Not too big, maybe the size of a nickel?
So I kept pushing and pulling the skin, and sure enough, it wasn't going anywhere and rock hard. Well ain't that a piece of shit. I'm thinking, yep need to go to the doctor, then I thought, too close to Christmas, don't want to deal with that during the holidays. I'll call the doc after the holidays, but keep track of the size.
I did keep track of the size, it didn't seem to grow much, and the holidays were over. I went to call the doc and set something up and looked at the calendar. Oh, I'm not calling. Not till I get back. I'm not putting my trip to Bali in jeopardy. I won't get a refund!!
More back story, back in August of 2013, I decided I was going to take a trip. There were some really good deals on Living Social. First choice was Morocco, but the State Department site said it wasn't the most stable place to go, (I only found that out after my son sent me the link and told me to read it), China was next, but there was a bit of tension between the US and China over that hacking. So I said Bali, and everyone thought that would be a good choice for my first international trip. If the price weren't so cheap I would have never gone.

Now I got back from Bali on January 22 (yes it was beautiful, and fun and yes I want to go back even with the long flight) so I called the doctor that Monday. Went in to see him the first available appointment, which was a week, two weeks? later. He felt it.
CT scan for the chest and abdomen, because you know how I tend to have those buggers start growing out of no where and they grow everywhere. That was Monday, went for a biopsy with an ultra sound on Tuesday.
The doctor felt it and at first thought a needle biopsy would work, until he did the ultra sound. That bugger is bigger than a golf ball. Going into the leg. So he took four "core" biopsies. Basically they numb you up and stick a 10 gauge needle into you and this thing goes through the needle out into the tumor and you hear a sound like a heavy duty commercial staple gun. That is the tissue sample being clipped off.
So there you have it. I'm starting the year all over again dealing with this. Isn't it ironic? I hate winter and this shit always happens in winter, and it always starts out in January/February.
No I don't know what was on the CT scan yet, or what the biopsy says, when I do I'll let you know.
The way I see it is I have a few different possibilities, I'll list them, starting off with the worst case scenario and ending with the best.
Worst, there is nothing that can be done, and I just live what life I have left (if this happens I'm putting out a begging jar so I can do another trip of a lifetime before I kick the bucket. Oh a bucket trip for the bucket lady! :D)
Less worse: I loose the right leg. Hell, I can live with that. Will have to figure out how to get around and drive but I can deal.
Less, less worse: They remove the tumor, damage the leg making mobility a challenge, I have to do chemo and radiation. Actually, I don't want to have a gimp leg so this may be worse then the less worse.
Less, less, less worse: Minimal damage to the leg, large scar, chemo and radiation
Less, less, less, less worse: No damage, huge ass scar, radiation.
Less, less, less, less, less worse: No damage, huge ass scar.
Never mind all of the small little variances in between each scenario. So it basically comes down to this, ain't no sense in being worried or concerned. When the doctor gets the results and talks to the cancer board (by the way I am a topic at just about every board because of the type of cancer, severity, reactions to treatment and surgeries, paving the way for others) we'll figure out a path. If I don't like the options, I'll go find Doctor Flynn at the American Cancer Institute in Pa.
So, I get to put off some things I wanted to do this year, gotta cover the out of pocket expenses. Seems like when I pay them off BAM they are back. (I was actually toying with the idea of going to Alaska in June just to see a bunch of folks, but oh well, you guys have fun for me).
That is the latest update from this end of the world. How's it going for you?
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| Water Temple in the mountains Bali |
Second week, or the third week of December I was sitting on the pot taking a leak, (you didn't expect me to be all prim and proper did you?) and my right hand (get your mind out of the gutter) was laying on my right thigh, and I thought I felt "something". Not too big, maybe the size of a nickel?
So I kept pushing and pulling the skin, and sure enough, it wasn't going anywhere and rock hard. Well ain't that a piece of shit. I'm thinking, yep need to go to the doctor, then I thought, too close to Christmas, don't want to deal with that during the holidays. I'll call the doc after the holidays, but keep track of the size.
I did keep track of the size, it didn't seem to grow much, and the holidays were over. I went to call the doc and set something up and looked at the calendar. Oh, I'm not calling. Not till I get back. I'm not putting my trip to Bali in jeopardy. I won't get a refund!!
More back story, back in August of 2013, I decided I was going to take a trip. There were some really good deals on Living Social. First choice was Morocco, but the State Department site said it wasn't the most stable place to go, (I only found that out after my son sent me the link and told me to read it), China was next, but there was a bit of tension between the US and China over that hacking. So I said Bali, and everyone thought that would be a good choice for my first international trip. If the price weren't so cheap I would have never gone.
Now I got back from Bali on January 22 (yes it was beautiful, and fun and yes I want to go back even with the long flight) so I called the doctor that Monday. Went in to see him the first available appointment, which was a week, two weeks? later. He felt it.
CT scan for the chest and abdomen, because you know how I tend to have those buggers start growing out of no where and they grow everywhere. That was Monday, went for a biopsy with an ultra sound on Tuesday.
The doctor felt it and at first thought a needle biopsy would work, until he did the ultra sound. That bugger is bigger than a golf ball. Going into the leg. So he took four "core" biopsies. Basically they numb you up and stick a 10 gauge needle into you and this thing goes through the needle out into the tumor and you hear a sound like a heavy duty commercial staple gun. That is the tissue sample being clipped off.
No I don't know what was on the CT scan yet, or what the biopsy says, when I do I'll let you know.
The way I see it is I have a few different possibilities, I'll list them, starting off with the worst case scenario and ending with the best.
Worst, there is nothing that can be done, and I just live what life I have left (if this happens I'm putting out a begging jar so I can do another trip of a lifetime before I kick the bucket. Oh a bucket trip for the bucket lady! :D)
Less worse: I loose the right leg. Hell, I can live with that. Will have to figure out how to get around and drive but I can deal.
Less, less worse: They remove the tumor, damage the leg making mobility a challenge, I have to do chemo and radiation. Actually, I don't want to have a gimp leg so this may be worse then the less worse.
Less, less, less worse: Minimal damage to the leg, large scar, chemo and radiation
Less, less, less, less worse: No damage, huge ass scar, radiation.
Less, less, less, less, less worse: No damage, huge ass scar.
Never mind all of the small little variances in between each scenario. So it basically comes down to this, ain't no sense in being worried or concerned. When the doctor gets the results and talks to the cancer board (by the way I am a topic at just about every board because of the type of cancer, severity, reactions to treatment and surgeries, paving the way for others) we'll figure out a path. If I don't like the options, I'll go find Doctor Flynn at the American Cancer Institute in Pa.
So, I get to put off some things I wanted to do this year, gotta cover the out of pocket expenses. Seems like when I pay them off BAM they are back. (I was actually toying with the idea of going to Alaska in June just to see a bunch of folks, but oh well, you guys have fun for me).
That is the latest update from this end of the world. How's it going for you?
Tuesday, February 19, 2013
No Lemon Slices for the Tea, and a moment of your time please
Nope, can't have any fresh fruit, or veggies. So basically it all has to be nuked, cooked and dead.
I can't stand the coffee here, so I switch to tea with lemon. Yeah no lemon. Huh. But they do have Mandarin Orange Slices on the menu, every time I ask for them I hear, you are not allowed fresh fruits or vegetables, I say they aren't fresh, they are canned. They check and I get my Mandarin Oranges.
Now, I like them but it isn't so much so I can have the orange slices, it is so I can pour the syrup into the tea, which helps make it a little more tolerable since I can't have my lemon. Yeah, I eat the oranges too.
Not sure exactly when I will get out of here, the infectious disease doctor thinks I may be able to go home soon, (he didn't define soon) but I'd have to be on antibiotics. He was thinking oral, but since I have a port, he is of the IV preference. Yeah, IV antibiotics at home, but he also said something about keeping me till Friday, he would talk to Dr. King and Vaughn. Friday?? Is he out of his freaking mind? But I am still waiting to hear from the surgeon and Dr. Vaughn. And the consensus of the platelet issue. Hurry up and wait.
Now, I'd like to ask a huge favor from everyone. My kid sister was diagnosed with breast cancer. The doctor said it was early, which is a good thing. She is terrified. The final diagnosis of the type won't be back until the biopsy comes back Friday. He told her she would probably do surgery, radiation, but nothing is solid yet. She is on her way to another doctor's appointment right now, she'll call me when she gets done.
I can't explain why cancer doesn't frighten me. I don't know how to explain it. I know the word frightens her.
So if you would please, light a candle for her, say a prayer, send her healing thoughts. She needs the strength. She is scared. Right now she is my bratty little sister who used to be a real pain at times, but she is scared and moral support is what she needs.
And if you know of any breast cancer links for help, support, whatever, I will be happy to pass them along.
I can't stand the coffee here, so I switch to tea with lemon. Yeah no lemon. Huh. But they do have Mandarin Orange Slices on the menu, every time I ask for them I hear, you are not allowed fresh fruits or vegetables, I say they aren't fresh, they are canned. They check and I get my Mandarin Oranges.
Now, I like them but it isn't so much so I can have the orange slices, it is so I can pour the syrup into the tea, which helps make it a little more tolerable since I can't have my lemon. Yeah, I eat the oranges too.
Not sure exactly when I will get out of here, the infectious disease doctor thinks I may be able to go home soon, (he didn't define soon) but I'd have to be on antibiotics. He was thinking oral, but since I have a port, he is of the IV preference. Yeah, IV antibiotics at home, but he also said something about keeping me till Friday, he would talk to Dr. King and Vaughn. Friday?? Is he out of his freaking mind? But I am still waiting to hear from the surgeon and Dr. Vaughn. And the consensus of the platelet issue. Hurry up and wait.
Now, I'd like to ask a huge favor from everyone. My kid sister was diagnosed with breast cancer. The doctor said it was early, which is a good thing. She is terrified. The final diagnosis of the type won't be back until the biopsy comes back Friday. He told her she would probably do surgery, radiation, but nothing is solid yet. She is on her way to another doctor's appointment right now, she'll call me when she gets done.
I can't explain why cancer doesn't frighten me. I don't know how to explain it. I know the word frightens her.
So if you would please, light a candle for her, say a prayer, send her healing thoughts. She needs the strength. She is scared. Right now she is my bratty little sister who used to be a real pain at times, but she is scared and moral support is what she needs.
And if you know of any breast cancer links for help, support, whatever, I will be happy to pass them along.
Monday, February 18, 2013
Hey can I get another piece of gauze? I'm still bleeding
I'll get around to explaining the title in a bit, it is all a part of the story, the adventure if you will, and yes, I do believe I stopped bleeding, at least it hasn't soaked through yet. Eh, whatever.
Chemo started on February 4th. Ten whole days earlier than in 2011. Yes on February 14th 2011 I started chemo. Happy Valentine's Day! First day is ok, I mean it went well, by the time the six hours was done, I was tired, but ok. Made it to wok everyday for an hour and a half, except for Friday, just couldn't motivate, nausea, hell I couldn't even get two sips of coffee down. But I dutifully got my ass to chemo and got my ass home.
One of the most disturbing sides effects (only one you ask?) is the fact it has affected my breathing. What I could normally do three or four times with out a problem (get your dirty little minds out of the gutter!!!! :D) go up and down the stairs, I can't do once with out huffing and puffing for air. I never knew how much I took the simple thing of breathing for granted.
I spent Friday, Saturday, and Sunday in bed, except for the doing my laundry, which I didn't put away right. It is driving me insane that it isn't put away right, and my room isn't right, and my house isn't right, I am literally going crazy over dust bunnies, and I can't help it. A clean home makes me feel better, any way after letting you into a bit of my quirks, Monday rolls around. I get up, huffing and a puffing, take care of the dogs, yeah I'm not making it to work. So I let my boss know and he makes sure I get a ride to my doctor's for my Newlasta shot.
My ride home was Michelle and a stop at the grocery was on the schedule, ten quarts of orange Gatorade were on my list, along with Bob Evans Mashed potatoes and Mac and Cheese. I waited in the car and Michelle made the run. Two ice cream scoops of taters were wonderful, then I go crash and burn.
In the morning, Michelle comes up stairs and there I am sitting in front of the dishwasher huffing and puffing, clenching the half and half waiting for my cup of coffee. I asked her to ask the CWO if it would be ok for me to park in the visitors parking space instead of where we normally have to park because it would make it easier. She did and he told her to tell me just park there and he would take care of it.
So I did, and by the time I got to my desk I was so happy to be able to sit down. But I got to work, and I made sure I got back to where I could sit when I felt it hitting a bit hard.
CWO told Michelle to move my car to the handicap spot, and he would take care of it. I work with the best people.
But I make it through the week, feeling a bit rough, Thursday was ok, but Friday AM I knew I was in for a rough one, down a couple of aspirin for fever, all I have to do is make it till 1 so I could get to the doctors. By 1 I was feeling rough, but I could drive, worse by the time I got to the doctor's. They took blood for my counts and I got to go sit in the office. Daniel walk in and says, "Oh Honey, you look like hell!" My response is a laugh, and "And I feel like shit." Needless to say my numbers in the tank. Doctor wants to admit me, can you drive to the hospital? Me, nope, not feeling like this. When I left work I was ok to drive, but I crashed hard and fast. I know my limits. So, off I go in an ambulance. I had Michelle's number scribbled down so they could call her and let her know to pick up my car, I thought I left my phone at home, turns out it was in the car. DUH.
Admitted Friday, lots of blood taken, my arm is bruised and I look like a junkie. (Did I mention the hair is falling out?) The doctors talk to me and tell me my blood levels, uh yeah I need transfusions. I've had bad reactions before to them so they pretreat. The blood transfusions go ok, and the tests come back my platelets are gone. So a platelet transfusion is on board.
The first half of bag goes ok, then it hits. I start to shake, the first thing I reach for is the O2, and try to cover up because I start to freeze and shake, just as I try to press the call button my nurse Lisa walks in, next thing I know there are like five nurses, a doctor, and all working to get the reaction under control. I'm running a fever, but my body is freezing, I am so cold I am shaking so hard I can't breath, I actually have to try to calm the shaking and think breathe in from the nose out through the mouth. They cut off the platelets, give me something for the reaction, and I start to feel warmer, so the shaking starts to subside, I stop shaking but I stay covered up, I tell them I'll peel off the layers as I feel warm enough, and as they were all taking in what had happened I started to remove layers of blankets. I scared a few people. But the nurses are all top notch here.
Next day the Doc comes in says my platelets are still way too low and I need another transfusion. They want to put a cocktail of Benadryl, steroid, and something else. Run it slow, three hours, have me checked and vitals taken like every fifteen minutes to thirty. At the first sign, tickle, or clue from me it stops, and the line gets flushed.
That was the longest, most stressful three hours. By the time it was done, I had a tension head ache like you wouldn't believe. Two percosets. Helped the pain, but didn't do a thing for the tight muscles in the neck and head. Slept like shit last night too.
Talked to the Nurse Practitioner from Dr. Vaughn's Office today, my platelets are still low and she thinks another transfusion is in order, we talked, and agreed to not do it today, and see what the counts are tomorrow, then if needed the same protocol will be used. Seems reasonable. I only wish the same nursing staff were on duty tomorrow.
What caused the reaction? They can test for disease but they can't test for things the donor may have eaten that you are allergic to, or medicines. If the donor of the platelets had Vancomyicyn or MSG for that matter. My body reacts to what it sees as something that doesn't belong. Not fun at all.
Rather frightening. But all is well at the moment. I am stuck here another couple days. Still have issues with one type of bacteria growing in the urinary tract, and e-coli growing in my blood. They think the tumor is some leaching it from the intestine. No I don't have it, but it is in my blood. Very weird.
When they told my that I went wait, I do this, this, this and this. The doctor laughed and said it wasn't my habits but the tumor may have found a way to leach from the bowl. Yeah, lucky me.
That is the complete update, and I am going to see if I can get some Tylenol for this headache and hopefully get some sleep tonight.
Oh yeah the title, they took some blood to test, did the usual ball of gauze, pressure tape. Well I soaked through the ball of gauze and had to ask for some more. It did finally stop.
Chemo started on February 4th. Ten whole days earlier than in 2011. Yes on February 14th 2011 I started chemo. Happy Valentine's Day! First day is ok, I mean it went well, by the time the six hours was done, I was tired, but ok. Made it to wok everyday for an hour and a half, except for Friday, just couldn't motivate, nausea, hell I couldn't even get two sips of coffee down. But I dutifully got my ass to chemo and got my ass home.
One of the most disturbing sides effects (only one you ask?) is the fact it has affected my breathing. What I could normally do three or four times with out a problem (get your dirty little minds out of the gutter!!!! :D) go up and down the stairs, I can't do once with out huffing and puffing for air. I never knew how much I took the simple thing of breathing for granted.
I spent Friday, Saturday, and Sunday in bed, except for the doing my laundry, which I didn't put away right. It is driving me insane that it isn't put away right, and my room isn't right, and my house isn't right, I am literally going crazy over dust bunnies, and I can't help it. A clean home makes me feel better, any way after letting you into a bit of my quirks, Monday rolls around. I get up, huffing and a puffing, take care of the dogs, yeah I'm not making it to work. So I let my boss know and he makes sure I get a ride to my doctor's for my Newlasta shot.
My ride home was Michelle and a stop at the grocery was on the schedule, ten quarts of orange Gatorade were on my list, along with Bob Evans Mashed potatoes and Mac and Cheese. I waited in the car and Michelle made the run. Two ice cream scoops of taters were wonderful, then I go crash and burn.
In the morning, Michelle comes up stairs and there I am sitting in front of the dishwasher huffing and puffing, clenching the half and half waiting for my cup of coffee. I asked her to ask the CWO if it would be ok for me to park in the visitors parking space instead of where we normally have to park because it would make it easier. She did and he told her to tell me just park there and he would take care of it.
So I did, and by the time I got to my desk I was so happy to be able to sit down. But I got to work, and I made sure I got back to where I could sit when I felt it hitting a bit hard.
CWO told Michelle to move my car to the handicap spot, and he would take care of it. I work with the best people.
But I make it through the week, feeling a bit rough, Thursday was ok, but Friday AM I knew I was in for a rough one, down a couple of aspirin for fever, all I have to do is make it till 1 so I could get to the doctors. By 1 I was feeling rough, but I could drive, worse by the time I got to the doctor's. They took blood for my counts and I got to go sit in the office. Daniel walk in and says, "Oh Honey, you look like hell!" My response is a laugh, and "And I feel like shit." Needless to say my numbers in the tank. Doctor wants to admit me, can you drive to the hospital? Me, nope, not feeling like this. When I left work I was ok to drive, but I crashed hard and fast. I know my limits. So, off I go in an ambulance. I had Michelle's number scribbled down so they could call her and let her know to pick up my car, I thought I left my phone at home, turns out it was in the car. DUH.
Admitted Friday, lots of blood taken, my arm is bruised and I look like a junkie. (Did I mention the hair is falling out?) The doctors talk to me and tell me my blood levels, uh yeah I need transfusions. I've had bad reactions before to them so they pretreat. The blood transfusions go ok, and the tests come back my platelets are gone. So a platelet transfusion is on board.
The first half of bag goes ok, then it hits. I start to shake, the first thing I reach for is the O2, and try to cover up because I start to freeze and shake, just as I try to press the call button my nurse Lisa walks in, next thing I know there are like five nurses, a doctor, and all working to get the reaction under control. I'm running a fever, but my body is freezing, I am so cold I am shaking so hard I can't breath, I actually have to try to calm the shaking and think breathe in from the nose out through the mouth. They cut off the platelets, give me something for the reaction, and I start to feel warmer, so the shaking starts to subside, I stop shaking but I stay covered up, I tell them I'll peel off the layers as I feel warm enough, and as they were all taking in what had happened I started to remove layers of blankets. I scared a few people. But the nurses are all top notch here.
Next day the Doc comes in says my platelets are still way too low and I need another transfusion. They want to put a cocktail of Benadryl, steroid, and something else. Run it slow, three hours, have me checked and vitals taken like every fifteen minutes to thirty. At the first sign, tickle, or clue from me it stops, and the line gets flushed.
That was the longest, most stressful three hours. By the time it was done, I had a tension head ache like you wouldn't believe. Two percosets. Helped the pain, but didn't do a thing for the tight muscles in the neck and head. Slept like shit last night too.
Talked to the Nurse Practitioner from Dr. Vaughn's Office today, my platelets are still low and she thinks another transfusion is in order, we talked, and agreed to not do it today, and see what the counts are tomorrow, then if needed the same protocol will be used. Seems reasonable. I only wish the same nursing staff were on duty tomorrow.
What caused the reaction? They can test for disease but they can't test for things the donor may have eaten that you are allergic to, or medicines. If the donor of the platelets had Vancomyicyn or MSG for that matter. My body reacts to what it sees as something that doesn't belong. Not fun at all.
Rather frightening. But all is well at the moment. I am stuck here another couple days. Still have issues with one type of bacteria growing in the urinary tract, and e-coli growing in my blood. They think the tumor is some leaching it from the intestine. No I don't have it, but it is in my blood. Very weird.
When they told my that I went wait, I do this, this, this and this. The doctor laughed and said it wasn't my habits but the tumor may have found a way to leach from the bowl. Yeah, lucky me.
That is the complete update, and I am going to see if I can get some Tylenol for this headache and hopefully get some sleep tonight.
Oh yeah the title, they took some blood to test, did the usual ball of gauze, pressure tape. Well I soaked through the ball of gauze and had to ask for some more. It did finally stop.
Saturday, December 31, 2011
Reflections on 2011
Well, it is 6 PM on New Year’s Eve, the dogs just finished
their dinner, the house is very quiet, Jasmine is at work at the Log Cabin, Jim
left to go out with some of his friends, Michelle and Evelyn went to church in
their PJs. OMG PJs!!
The reason being, a dear friend of mine lost her son in Afghanistan. What mother needs that grief? My heart breaks for her; she has faced the loss of her son with honor and dignity. She has brought honor to his memory. She is an incredibly awesome woman.
But when it comes to me, it seems that saying works. The lessons it brings me aren’t always the easiest to take, and sometimes I wish that it would just bring me what I want (think winning lottery ticket and being a philanthropist). But it is what it is.
My daughter chose to leave her life in California to be here with me, no one will know what that means to me, and I watched her grow as a woman. She has been blossoming and becoming the woman and artist I always knew she was.
Here I sit, and have the urge to write. But what to write about? I look back over the
past year and I do not wish any of it changed.
Yes, it was a challenge; I think more of a challenge to those around me
than to myself.
I have to admit, last New Year’s Eve I wasn’t even thinking
that I’d be spending 2011 dealing with cancer and surgeries, hell, I was just
hoping to get through the year with positive balance in my savings
account. (And yes I did that! I have thirty-five cents in my savings
account, isn’t much, but it is a positive!)
Last year I may have even thought I might have a date on New
Year’s Eve, but life had something different in mind for me.
Life doesn’t give you what you want, but it gives you what
you need. Sometimes I have to disagree
with that statement. The reason being, a dear friend of mine lost her son in Afghanistan. What mother needs that grief? My heart breaks for her; she has faced the loss of her son with honor and dignity. She has brought honor to his memory. She is an incredibly awesome woman.
But when it comes to me, it seems that saying works. The lessons it brings me aren’t always the easiest to take, and sometimes I wish that it would just bring me what I want (think winning lottery ticket and being a philanthropist). But it is what it is.
In 2003 life brought me cancer, a time in my life when I
really thought that the human race was comprised of two kinds of people, those
who loved their pets and those who thought they were disposable, and those who
would say what they thought you’d like to hear but not mean a word of it. To be honest my heart was in a very dark
place.
Back then it taught me that not everyone was like that, that
there were people to genuinely care and wanted to help, and it taught me I was
stronger than I ever thought I could be.
2011 I needed lessons again; at least life saw it that
way. But I don’t think I learned
anything new, it just reaffirmed things I already knew.
I already knew I worked with the best bunch of people you
could wish for, I mean how many people that YOU work with would shave their
heads to show support and that they care?
Seriously. You have no idea how
that touched my heart.My daughter chose to leave her life in California to be here with me, no one will know what that means to me, and I watched her grow as a woman. She has been blossoming and becoming the woman and artist I always knew she was.
My son is working on his PHD. And I am so proud of him, but nothing in the
world can describe how I felt when he told me he was proud of me. I don’t think anyone will ever understand how
much that meant to me.
All of my friends with their cards and notes of support,
letting me know that they were thinking of me, and my sister Carol with her bracelet
campaign, and the notes and packages from Addie.
Yeah some of it was a bit rough, even gave the doctors a
scare, but I survived it. Got the scars
to prove it. Five surgeries this year. Lost 2/3 of my right lung, two feet of
intestine with two tumors, part of the right pectoral muscle and main nerve to
the arm, but it was all worth it. I am
alive and I have a wonderful family and a great bunch of friends.
So, I may not be out to a fancy party with a date to ring in
the New Year, but I am content in knowing that I have family and friends who
love and are there for me.
Happy New Year everyone, May the New Year bring you health,
happiness, prosperity and all that your heart desires.
Huh, maybe next year I'll have a date. ROTFLMAO!!Monday, October 24, 2011
Two more weeks of Radiation, Port goes back in then Chemo
Yeah I know, been awhile.
Well, I have two, well, actually two and a half weeks of radiation left. At a higher dose of radiation too.
The skin in the area of radiation is a bit tender, feels drier, and looks redder and scratchy/dry. What is the real pain in the butt is the fact that not only do I have the little "tattoo" dots, but they also mark around the dots with Sharpie, black sharpie, and make an "x" on the center of the spot of radiation as well as draw a circle around it.
Sounds funny doesn't it? This wonderful technological treatment, has use of a black Sharpie marker to line up the area for treatment. That really isn't so bad, but the fact that the damn marker rubs off on your clothes is a pain in the ass.
That stuff doesn't wash out, and I really don't have that many clothes that fit right now! Beige, white bra's, the strap is turning black. (Remember the area being radiated is under the right clavicle bone - collar bone).
Oh yeah, and the black circle they draw shows unless I am wearing a high neck shirt, even a modest scope neck makes it look like I drew lines on myself in Sharpie. Seriously. And yes, I catch people looking at the black lines. They get all embarrassed when I say, yes, that is a black marker line. My technicians like to draw circles and x's. Of course they don't know I mean the radiation techs. Not the phone techs.
Get to see Doctor Flynn the 27th. I can tell you already about the whole appointment, we'll discuss the up coming "procedure" - getting a new port put back in on the 4th of November. How I am doing, which really is fine other than a bit of tenderness. My ability to find great bargains. (Found a Ralph Lauren purse at the Good Will for $0.83, yes eighty three cents, and a Prada - for real one - for $3.99). He'll also tell me I will need to go for a CT scan of the main portion of my body to make sure the cancer is all at bay, and he will be a bit concerned about the tenderness in the abdominal area. Then I'll go for blood tests, and what ever pre surgery thing I need to. Get my port on the fourth and start chemo on the 7th.
Doctor Vaughn, oncologist, is going to try to give me less of a dose of the chemo meds this time around considering how I reacted last time. He'd like to keep me out of the hospital. If I don't react well, I'll end up having to be hospitalized for chemo treatments. Four days in and a week out. Not something I would look forward too, but I did that routine in 2003 and survived, so I can do it again if I have to.
The biggest thing I was worried about was a wedding cake I wanted to do for a gift for Kristen and John Q. And it got done, and they liked both the Bridal and Groom's cake. I was worried about it when they said I had to do chemo again. If they had started chemo first I wouldn't have been able to do it, but the doctors listened to me and my bitching about I really needed to do this and it meant a lot to me. So I won. :D
Any who, here are some pictures of my hobby.
Well, I have two, well, actually two and a half weeks of radiation left. At a higher dose of radiation too.
The skin in the area of radiation is a bit tender, feels drier, and looks redder and scratchy/dry. What is the real pain in the butt is the fact that not only do I have the little "tattoo" dots, but they also mark around the dots with Sharpie, black sharpie, and make an "x" on the center of the spot of radiation as well as draw a circle around it.
Sounds funny doesn't it? This wonderful technological treatment, has use of a black Sharpie marker to line up the area for treatment. That really isn't so bad, but the fact that the damn marker rubs off on your clothes is a pain in the ass.
That stuff doesn't wash out, and I really don't have that many clothes that fit right now! Beige, white bra's, the strap is turning black. (Remember the area being radiated is under the right clavicle bone - collar bone).
Oh yeah, and the black circle they draw shows unless I am wearing a high neck shirt, even a modest scope neck makes it look like I drew lines on myself in Sharpie. Seriously. And yes, I catch people looking at the black lines. They get all embarrassed when I say, yes, that is a black marker line. My technicians like to draw circles and x's. Of course they don't know I mean the radiation techs. Not the phone techs.
Get to see Doctor Flynn the 27th. I can tell you already about the whole appointment, we'll discuss the up coming "procedure" - getting a new port put back in on the 4th of November. How I am doing, which really is fine other than a bit of tenderness. My ability to find great bargains. (Found a Ralph Lauren purse at the Good Will for $0.83, yes eighty three cents, and a Prada - for real one - for $3.99). He'll also tell me I will need to go for a CT scan of the main portion of my body to make sure the cancer is all at bay, and he will be a bit concerned about the tenderness in the abdominal area. Then I'll go for blood tests, and what ever pre surgery thing I need to. Get my port on the fourth and start chemo on the 7th.
Doctor Vaughn, oncologist, is going to try to give me less of a dose of the chemo meds this time around considering how I reacted last time. He'd like to keep me out of the hospital. If I don't react well, I'll end up having to be hospitalized for chemo treatments. Four days in and a week out. Not something I would look forward too, but I did that routine in 2003 and survived, so I can do it again if I have to.
The biggest thing I was worried about was a wedding cake I wanted to do for a gift for Kristen and John Q. And it got done, and they liked both the Bridal and Groom's cake. I was worried about it when they said I had to do chemo again. If they had started chemo first I wouldn't have been able to do it, but the doctors listened to me and my bitching about I really needed to do this and it meant a lot to me. So I won. :D
Any who, here are some pictures of my hobby.
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| Wedding Cake |
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| Groom's Cake |
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| Cupcakes for the Bride's Sister |
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| Going Away Cake for Sgt. Dean |
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| Baby Shower Cake for Debbie |
Tuesday, September 6, 2011
August 23rd, has come and gone. Chemo and Radiation ahead
Been meaning to getting around to doing this for awhile. Trouble is, when I felt like expressing my thoughts (yes I have them on occasion) I wasn't near my laptop, and when I could have done it, I really didn't feel like sitting down and making my brain work. (Yes I have a brain, they did a couple of CT scans to prove it!) I so wish I could be one of those witty, inspired, dedicated to weekly posts, but I am not. I suffer from "Shiny Metal Object Syndrome", other wise known as ADHD, oh sorry, got side tracked again. :D
This surgery was the easiest of all of them. Tuesday I went in to have the mass removed from under the right clavicle, in between the pectoral muscle, and the port I had for chemo was removed, it wasn't working anyway and they wouldn't be able to use it. Wednesday my doctor let me go home. I even asked him if I could go back to work part time on Thursday, but he said no I had to wait till after my follow up appointment, which was the following Monday, so I was back to work on Tuesday. A bit achy, but otherwise functioning fairly well.
When I went in for my follow up, I got my hug from Dr. Flynn, love him and his staff. Such wonderful, personable people.
Any way, first thing I asked was, did you get good margins? Let me explain. Most tumors are in cased in a very thin membrane, and the surgeon tries to remove a margin of healthy tissue around the tumor to make sure the membrane isn't damaged. If it is damaged there is a possibility of microscopic cancer cells that are still there and the cancer will come back. (No that isn't what happened in my case, in 2003 they got good margins by removing my left hamstring, hell the damn tumor was attached to it!) I just happen to be one of those lucky folks that have it reoccur, and this year I was even luckier to have it decide to pop up in four different spots in my body, which does happen.
He did get good margins. BUT and here is the but, the pathology report says that in the 12:00 position of the mass the membrane was damaged. Now remember we are talking about something that is extremely thin, and for the human eye to see it near impossible I would think.
Dr. Flynn explained to me that when he took out the mass, he removed a small portion of the pectoral muscle, along with a few branches of the nerve that it was attached to. The nerve just so happens to be the nerve that controls my right arm. He felt certain he got good margins, he even took a few branches of the nerve to be sure, and yes I can tell they are gone, luckily the motor skill they control does not bother me, and the other muscles are learning to help compensate.
The membrane could have been damaged at the lab, or the margin was there in the first place. It isn't Dr. Flynn's fault, come on, this man is an amazing surgeon! He removed part of my intestine and I don't use a bag to crap in!
So to err on the side of caution, I need to under go intensive radiation on the area the mass was in as well as more chemo therapy, which means I will have another port put in. (When they take it out it will be the third port in my collection!)
The eighth I see the Radiation Oncologist, Dr. Chinalt, and on the 13th I see my Chemo Therapy Oncologist Dr. Vaughn, they'll give me my schedule, and what drugs will be used. Dr. Flynn will put in another port and I'll start.
That in a nut shell is what is going on. Think I'll go read a book, hmm, maybe go to Starbucks and sit around. It is really going to suck having the colder weather here, I've come to enjoy sitting out on the deck or at Starbucks to relax and read. Oh well, that is a topic for another time. Talk to you all later!!
This surgery was the easiest of all of them. Tuesday I went in to have the mass removed from under the right clavicle, in between the pectoral muscle, and the port I had for chemo was removed, it wasn't working anyway and they wouldn't be able to use it. Wednesday my doctor let me go home. I even asked him if I could go back to work part time on Thursday, but he said no I had to wait till after my follow up appointment, which was the following Monday, so I was back to work on Tuesday. A bit achy, but otherwise functioning fairly well.
When I went in for my follow up, I got my hug from Dr. Flynn, love him and his staff. Such wonderful, personable people.
Any way, first thing I asked was, did you get good margins? Let me explain. Most tumors are in cased in a very thin membrane, and the surgeon tries to remove a margin of healthy tissue around the tumor to make sure the membrane isn't damaged. If it is damaged there is a possibility of microscopic cancer cells that are still there and the cancer will come back. (No that isn't what happened in my case, in 2003 they got good margins by removing my left hamstring, hell the damn tumor was attached to it!) I just happen to be one of those lucky folks that have it reoccur, and this year I was even luckier to have it decide to pop up in four different spots in my body, which does happen.
He did get good margins. BUT and here is the but, the pathology report says that in the 12:00 position of the mass the membrane was damaged. Now remember we are talking about something that is extremely thin, and for the human eye to see it near impossible I would think.
Dr. Flynn explained to me that when he took out the mass, he removed a small portion of the pectoral muscle, along with a few branches of the nerve that it was attached to. The nerve just so happens to be the nerve that controls my right arm. He felt certain he got good margins, he even took a few branches of the nerve to be sure, and yes I can tell they are gone, luckily the motor skill they control does not bother me, and the other muscles are learning to help compensate.
The membrane could have been damaged at the lab, or the margin was there in the first place. It isn't Dr. Flynn's fault, come on, this man is an amazing surgeon! He removed part of my intestine and I don't use a bag to crap in!
So to err on the side of caution, I need to under go intensive radiation on the area the mass was in as well as more chemo therapy, which means I will have another port put in. (When they take it out it will be the third port in my collection!)
The eighth I see the Radiation Oncologist, Dr. Chinalt, and on the 13th I see my Chemo Therapy Oncologist Dr. Vaughn, they'll give me my schedule, and what drugs will be used. Dr. Flynn will put in another port and I'll start.
That in a nut shell is what is going on. Think I'll go read a book, hmm, maybe go to Starbucks and sit around. It is really going to suck having the colder weather here, I've come to enjoy sitting out on the deck or at Starbucks to relax and read. Oh well, that is a topic for another time. Talk to you all later!!
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