Lost in the Sauce

Lost in the sauce is a good way of putting how I have been feeling lately.  Well, at least since I read the CT Scan report.

Well actually, it started before my reading the report.  It all started with a phone call from the doctor's office.  I get a call "Go to the ER, NOW."  I ask why.  The nurse replies "I don't have that information, the doctor wants you to go to the ER NOW.  Which ER are you going to?"  I said ok, I'm going to Stafford Hospital ER, now.  They actually called the ER and told them I was on my way.  

When I got there, I had maybe  a 5 minute wait before I was in the back in one of those wonderful hospital gowns.  The nurse that walked me back told me the doctor's office called and let them know  I would be there, and I would have to wait to talk to the doctor about the CT Scan.

Turned out that my intestine is folding back on itself.  Insusseption I believe it is called.  Blood is taken, the ER doctor talks to the surgeon that did my Whipple, it comes down to wait and see.  If I get any severe pain, or start running a fever, get to the ER because they will have to do surgery.  OK I can handle that.  So I got to go  home.  But during the conversation with the ER doctor, he mentioned there were new tumors in my intestine.  I thought I heard him say that but was more concernced over the possiblity of having to have emergency surgery and how  I was going to have the dogs taken care of and how I was gonig to get home.  So I let it go.  My mind didn't acknowledge the fact the tumors spread.

Then I finally got the notice that the report for the CT Scan was available. It was one of those good news/bad news type of deals.  The good news is that the chemo I am on (Votrient) helped shrink the tumor in my left lung by 2 mm.  Actually, that would be great news if that were the only news there was.  The bad news, two new tumors in the intestine.  Still in the back of my mind I wanted to have misread there were two new tumors.

To be honest, I wasn't all that concerned, I figured I'd see my oncologist and they would change my chemo to see if it would help.

Let me be honest, I was getting anxious over the whole thing.  I wanted to see the doctor and get the chemo changed.  Somehow I wanted to believe that maybe I read the report wrong.

I mean seriously, how does chemo work on tumors above the waist, but lets tumors grow below the waist?  The chemo is in the blood!  It goes everywhere.

Well, I finally got to see my doctor, I was in a fairly good mood.  All I needed him to do was confirm what my mind wanted to happen, change the chemo.  

This time he said the word surgery.  That stopped me cold. He wants me to talk to my general surgeon and to an oncology surgeon.  What they decided determines what happens next.  Right now I am waiting for the offices to call me to set up appointments.  They were supposed to be set up for next week, but so far I haven't heard from either one.  So I am stuck again in the holding pattern. I saw Dr. VAughn on the third of March.

I am not that crazy about surgery.  I've had two abdominal surgeries in the past.  I was cut open from above my belly button to just above the pelvic bone so they could access the intestines.  They were not easy surgeries.  They took a lot out of me.  

Part of what is bothering me this happened when I just started to work out and try to get into better shape, funny thing being is that one of the reasons in the back of my head was because of possible surgery.  Part is the fact I actually have been taking steps to go back to school for the summer quarter.  That is May.

Recovery from surgery can take a long time for me.  It isn't as simple as people think.  It isn't a snip, snip you are done type of thing.  People mistakenly think that.

Add to that if they decide that surgery just isn't an option for me, Doctor Vaughn is talking about adding another drug to the Votrient to see if it will help.  Which translates into more side effects. How will that affect school?

On top of that Doc looks at me and says "You've been battling this for a long time.  The bag is getting thin."  Translation - they are running out of things to try.  I'm at the bottom of the barrel scraping it. 

I may be running or have run out of options.

I have all this running through my head while waiting for a doctor's office to call with an appointment.  No wonder I am depressed.

The Most Asked Question - How do you do it?

I'm not sure that today is the best day to be writing this; but the words are rolling around in my head and I can get on the laptop to put them into "print."  The reason I say that is I am not in the best of head spaces at the moment, but maybe that is not so bad.  It means a glimpse into the other side.

I don't know how I do it.  Part of it is guilt.  Does that surprise you?  Yes guilt.  I feel that I would be abandoning the people I love.  Abandoning my son and daughter, my sisters, my friends.  I feel the guilt because I can imagine the sadness that my death would bring them.  I do not want people I love to feel sad because of me.

Here is the other side of the guilt.  I feel guilty for still being around when so many that have been diagnosed after me had passed on.  Survivor's guilt they call it.  It sucks.  I've lost too many people to cancer.  Waiting for it to take me is like waiting for the other shoe to drop.

How do I do it?  I don't know.  I am tired.  I  may have mentioned it before in a post.  But I am tired of cancer.

Once was enough, 2003 was more than enough, but no for some reason I drew the lucky number in the cancer lottery.  2011 was awful.  I lost 2/3 of my right lung that year, and part of my intestines.  Spent three quarters of the year doing chemo, surgery, and being hospitalized.  Even lost a portion of my right pectoral muscle that year.  That was the year the earthquake hit Virginia.  I was in the hospital when it hit.  Then 2013, 2014, twice in 2016.

The first time in 2016 was May.  Tumor in the lung showed up.  Surgery, they got good margins, no chemo.  Then again in November.  I started feeling like I couldn't breath because of bronchitis or walking pneumonia.  Finally went to the ER.  Boy was I wrong.  Surgery was scheduled right before Christmas.  I thought they would just go in remove the tumors, but no, all they could do was drain the lung and debulk the tumors.  They are in my left lung, on the sack of the heart, in the lymph nodes, on the Vena Cava, and aorta.  Surgery really isn't an option anymore.

So yeah, I am tired.  I am tired of the trips to the doctor's office and his smiling face, telling me how great I am doing even though they really can't do anything for the cancer other than try to keep it from spreading, which really has been proven fruitless.  Eight months on a chemo and it spreads.  Since January 2017 I have been on three different chemo drugs.

I am tired of the blood draws, the CT scans, waiting for the reports.  I am tired of them trying to make everything sound so up.  Just be straight with me.  Did it spread?  Yes or no?  What is the next drug?  Just tell me.

Right now they are trying to give me quality of life rather than quantity.

The chemo I am on, Votrient, is the easiest chemo I've been on.  So far my side effects have been nausea, some fatigue, some shortness of breath, and my hair changing from dark brown to varying shades of silver and grey.  Salt and pepper.

I am tired of having to remember to take poison every morning.  800 mg of it.  Yeah, my breakfast is 800 mg of Votrient and water.  I have to wait about 15 minutes before I can have my first cup of coffee.

I am tired of feeling weak.  The Yolandis that I was on caused major breathing issues, so my physical activity was limited.  Kind of hard to want to do something physical when you can't breath.  Now on the Votrient the breathing issues are still there, but improved 100%.  I need to start working out to get into better shape, but I need motivation.

I am tired of feeling like I am a drain on my family and friends.

I am tired of worrying about co payments, taking meds, fighting the bills that were supposed to be covered.  Tired of worrying about gap insurance now I am on Medicare.

Did you know that insurance companies can pick and choose the areas (counties) they want to cover?  They don't have to offer gap insurance to everyone?  If I were 65 I'd have plans available.  Since I am not there is only one plan for people under 65 on disability, and they don't cover my area.  Medicaid is out because they said I am $200 over their cap on qualifying.  So now I have the 20% to cover that Medicare doesn't.  Grateful they cover 80% of the doctor's and hospital, but, yeah, I'm tired of worrying about that.

I am so tired of needles and blood draws, and reading then rereading the reports.

I am tired of feeling like if I show any weakness people will think less of me.  I am tired of feeling like I whine.

My daughter Jasmine, my dog Sasha, me, my dog Bailey

I am tired of the isolation.  I feel alone.  The days are all filled with the same thing.  I try to motivate, but it is really hard some days.  Yes, there are days I just go back to bed.  There are some days that I don't want to get up, but my dogs remind me that they are my responsibility and I have to take care of them because they love me.

Don't get me wrong, I don't wallow in pity.  I am working on socializing more.  I volunteer twice a week at Mary Washington.  One day for three hours we sew cough pillows for patients.  And the other day I volunteer I work in the Gift Shop.  I also go to "Meet up" things, there is a group of single people 50 and over that meet up and I try to go once a month.  I need to make more friends locally to have coffee with and talk to.  Like I said, I am working on it.

I am so tired of feeling like I am in white water rapids being rushed down the river with no hope.

How do I do it?  I don't know.  I journal.  Everyday.  Even if all I do is write down that I feel like crap.  I try to write something down every day to get it out.

I write this blog, yes, I don't write often, and it may not get read much, but with it I am trying to show my inner feelings and frustrations, so it is an outlet.  I actually end up feeling better by the time it is published.

How do I do it?  In my heart I know that my family and friends are there.

An update on the Lowe's job.  I emailed my supervisor about my concerns when it came to the customer service, and my inability to lift the 5 gallon buckets, and my limit to 15 hours a week.  Along with the concern of being scheduled three 8 hour days in a row.  (Down stocking and fronting on a four hour shift exhausted me, and I was honest with them in the interview I am not in shape, and I need to work on stamina).  After not hearing any response for five days, I figured that maybe I should work on getting in better shape before I try working there.  So I resigned.  I really didn't feel comfortable my concerns were not address.

I haven't given up looking for a part time job either.  There is something out there that can help me financially, physically and yes, mentally.

Thanks for reading this, I am in a better head space now.  Time to go have some breakfast and vacuum.

Lessons I learned - So You WON'T Have To

I must freely admit, this time I screwed up.  BIG TIME.  I took answers I got at face value, if there were any other pertinent information, the person I was speaking with would tell me.  Or so I assumed.

Part of the problem I am dealing with right now is my own damn fault because I got lazy and did not ask the questions I should have and advocated harder for myself.

It all has to do with Part D of Medicare, the drug part.  You must get a separate insurance policy to cover drugs.  Well, I got a letter that said I qualified for a policy at no cost.  After reading the letter, I am thinking to myself, well, let me make an appointment with the insurance councilor with the Department on Aging and ask a couple questions.  I was going to make sure my drugs were covered.

Four Tablets for breakfast every day.

The appointment day showed up, I go and bring all the papers I got saying the same thing.  I did not have to do anything, I qualified for this drug coverage.  I shared my concern about my drugs being covered.  She looked up the Votrient, Zofran and Compazine.  All were covered.

The relief I felt was palatable.  I felt as if a huge weight was lifted from my shoulders.  I could have danced.  I was so relieved that all the other questions I had intended to ask flew out of my mind.  Hence one of the lessons.

One of my two best friends

I had wrongly assumed if there were a deductible or co pay she would tell me since she was looking at the policy information.  I was wrong.  I should have asked. 

A week ago, Monday, I got a bug in my head and called the insurance company since I finally got the insurance card with policy number and contact information. 

I knew I was in trouble when I got a busy call center.  There was all kinds of background noise, and the line kept cutting out.

She kept trying to give me information I was not asking for.  I finally told her to stop.  I wanted to know if my prescription drugs and chemo drug were covered.  Please answer the questions as I ask them.

Votrient, yes.  Zofran – only the generic, but it must be preauthorized. 

My second best friend.

Anti-nausea medication, the generic form needs preauthorized.  So, I get the phone number the doctor is going to have to call to get it done.  (The chemo drug does not need preauthorized).  Compozine, generic covered, no preauthorization.

Now I ask, are there co pays?  She says, yes, but the co pay kicks in after the deductible was met.  Me: “Deductible?  What deductible?”  Who ever heard of a deductible on a drug plan? 

Her reply “$415.00.  I sigh then ask ok, what are the co pays after the deductible is met.  (I am thinking, ok I can meet that with a couple of the Zofran prescriptions, that stuff is not cheap.)

She starts with the co-pay amounts, since the Zofran is tier 2, $3.00, the Compazine is tier 2 so $3.00.  I am thinking so far so good.  Then she says the Votrient (my chemotherapy drug) is tier 5, so it is 25 (at this point I was thinking $25.00 during her pause.  I could live with that) then she says percent.  I choke.  I repeated back 25%??  That is $3250.00!!!  And only if the pharmacy you work with charges the same amount as the one, I am dealing with now.  The cost for this chemo is $13,000.00 a month.  (Trust me it is cheaper than some of the other chemo I have been on over the years).

So right now, I have applied to the manufacture for grant money to help cover the copay on the chemo.  And I am scrambling to find other means to cover by applying to foundations.  One told me they could not help me because they do not have funds to help people with my kind of cancer.  Another said they were a last-ditch foundation, and once I am turned down from the others, they may be able to help.

Now this is what I want you to learn from my mistakes:

1. You are your own advocate.  Do not assume that just because a person deals with things regularly they will give you all the information you need.
2. Sit down before you talk to whoever, and think about the information you need.  Write those questions down.  Bring them with you.  Get others to suggest questions.
3. If they start going down a side topic, bring them back to the question you asked.  And tell them to answer that question first, then the next question.
4. If you do not understand what they are telling you say that.  Just say, wait I do not understand.  Make them explain it to you.
5. There is no such thing as a dumb question (especially when it comes to health care and insurance)
6. This is so important it needs listed twice:  DO NOT ASSUME THAT YOU WILL GET ALL THE INFORMATION YOU NEED EVEN WHEN DEALING WITH “EXPERTS.”  YOU NEED TO ASK QUESTIONS.

Now that I learned to ask more questions, I hope you have too.

The Story of a Tattoo

Phoenix in process by Robert V. Black Dragon Tattoo, Urban Md

I was chatting on the phone last night with a friend (yes, me on the phone AFTER work! Amazing isn't it?) She asked me a very good question, (this isn't her exact words but hopefully close)  Why would you get cancer tattooed on you?  What about all the prayers and family and friends that helped and supported?  Aren't you throwing it back in God's face by doing that?  All very valid questions, and to be honest, questions the tattoo is supposed to spark.  Not only those questions, but questions about cancer, dealing with it, helping someone who is going through it, what it is like to survive it.

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

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.

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.

Day Three, Cycle One, Third Dance

I'm cold.  I have a vest on and a wrap and I am still cold.  May put my jacket on.

Anyway, this day is finding me puffy like the Stay Puff Marshmallow Man.  Even the ice on the eyes to reduce puffiness didn't  help. 

Since Tuesday, I have put on 9 pounds in water weight.  Can you say it is time for Lasix?  I knew you could.

The nausea is a bit worse this time around, and the fog is showing up.  As long as I am in no hurry to get the thought down or do something it works out.  Tired too after treatment, but I'm wondering if it is just because I am tired, or the nausea, I tend to want to sleep when I am nauseated. 

I thought I was on a cycle of one week of chemo and three weeks off, but looking at the list of appointments, it is one week on and two weeks off.  The next schedule is the 25th.  I'll have to double check on that.  Either way you look at it, it is still a lot of chemo.

Thoughts are drifting, time to save this as a draft and come back later.

Well it is later and I don't have any great insights to this mess.  I'm tired and I want my fresh brewed Dunkin' Doughnuts coffee from my kcup. 

Only about an hour to go, getting done a bit earlier today, tomorrow will be earlier.  Then two days to get my head together  for work.

Today isn't the most positive day, I feel run down.  Hey at least I have time to dig through the family tree when I feel up to it.

See you on the flip side.

Day 2, Cycle 4. Chemo Drugs 101

Well, the Aloxi/Decadron, anti nauesa drugs went in, now the Mesna, helps prevent damage to the bladder is going in, then the Methylene Blue, suppose to help the side effects of the Ifosfamide.

When I first went through Chemo in 2003 I had an interesting chat with my Doctor.  Both he and I agree on this over simplified version of an explaination:  Chemo therapy is feeding the body poisons while trying to protect some other organs, killing the body's cells off slowly, basically killing you slowly to kill the cancer, to bring you back from the low depths the chemo brings you too.

Basically it is true, you slowly begin to feel like crap, your hair falls out, your immunial system is compromised at times,  your blood production is slowed.  By the time chemo ends, at least it is for me, I feel like crap, look like crap and don't want to eat.

I figured that it my help if I list my drugs, and what they treat, with some of the side effects.  What may it help?  It may help those who know someone going the chemo, watching the effects wondering why it is happening.

So here is my list with what they do and side effects.  There are many more drugs and side effects.  These are just what I get.  Need more information?  www.chemocare.com

• Aloxi - anti nausea medication.  Helps prevent the nausea the day of, up to 24 hours after the chemo treatment.  Side efftects:  Allergic reaction.  Headache, constipation, tiredness. 
• Decadron - anti-inflammatory medication, anit nauea.  Relieves inflammation in various parts of the body. It is used specifically to decrease swelling  associated with tumors of the spine and brain, and to treat eye inflammation. Treat or prevent allergic reactions. As treatment of certain kinds of autoimmune diseases, skin conditions, asthma and other lung conditions.  As treatment for a variety of cancers, such as leukemia, lymphoma, and multiple myeloma.  Used to stimulate appetite in cancer patients with severe appetite problems.  Also used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands). (OK so this wasn't super simple explanation)
• Emend - Anti nausea med, blocks chemicals that cause nausea.  If you already are nauseated, it doesn't work.  Side effects: headache, flushing, allergic reactions, shortness of breath.
• Mesna - Protects the bladder from damages from the effects of chemo therapy drugs.  Side effects:   bad taste in the mouth, diarrhea or soft stools, headache, nausea, vomiting, fatigue.
• Methylene Blue - Treats methemoglobinemia, vasoplegic syndrome, ifosfamide-induced encephalopathy, cyanide poisoning. 
• Ifosfamide - Used to treat:  Recurrent testicular cancer and germ cell tumors, Sarcomas (soft-tissue, osteogenic sarcoma, Ewing's sarcoma), Non-Hodgkin's lymphoma, Hodgkin's disease, Non-small cell and small cell lung cancer, Bladder cancer, Head and neck cancer, Cervix cancer.  Side effects:   Low white blood cell count. (This can put you at increased risk for infection.)  Low Platelet count. (This can put you at increased risk for bleeding.).  Hair loss, Nausea and vomiting, Poor appetite.   These side effects are less common side effects (occurring in about 10-29%) of patients receiving ifosfamide:  Central neurotoxicity (including sleepiness, confusion and occasionally hallucinations).  Yes I fall into the 10-29% category.  Delayed effects:  There is a slight risk of developing a blood cancer such as leukemia.  Yes even chemo therapy drugs can cause cancer down the road.  Ironic isn't it?
• Epirubicin - Breast cancer.  No I do not have breast cancer, or any symptoms of it.  Side effects:  Pain along the site where the medication was given   Nausea or vomiting.  Urine will appear red for 1-2 days (the Methylene Blue does the same thing only blue, and it over powers the pink or red) Low blood counts, both red and white.  Mouth sores.  Hair loss on the scalp or elsewhere on the body (the hair doesn't have a chance with these drugs I am taking),  Nausea and vomiting (see a trend here?).  Fatigue.  Amenorrhea (loss of menstrual cycle).  Darkening of the skin where previous radiation treatment has been given. (radiation recall).  Diarrhea, Infection,  Darkening of the nail beds, Conjunctivitis.  Problems with fertility. A serious but uncommon side effect of epirubicin can be interference with the pumping action of the heart. You can receive only up to a certain amount of epirubicin during your lifetime.

That is the complete list, well not counting the pills, compozene, and Zofran.  Anti nausea, it is really interesting all the anti nausea drugs they use now, and it does help.  As long as you take them at the first sign of queasiness, cause once it gets going, just get out the puke bucket.

A good place to go for drug information is www.chemocare.com .  Where I got most of my information.

The Ifosfamide is next, where troubles begin if there are any.  Last time on day 2 I got a ride to the hospital in an ambulance.

Hope this is better this time.

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.

Wedding Cake

Groom's Cake

Cupcakes for the Bride's Sister

Going Away Cake for Sgt. Dean

Baby Shower Cake for Debbie

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!!