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!!

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!!

Cycle FIve, Day Three

Cancer is such an insidious disease.  Is that even a word?  I mean I look around me everyday I am here and see young people, young parents, middle aged parents, grand parents, even teens.

It doesn't  know any boundaries, it doesn't know race, or creed.  It doesn't care if you are Buddhist, Christian, or Muslim.  Whether you are rich or poor.  It just doesn't care.

I wish there was a way to have it leave the  young alone.  The children, the teens, the parents with young children.

I look at it this way, it is a hard enough thing for the family and friends to deal with but it is even harder if it is a child, young person or parent with young children.

It is hard on the older children, like the ages mine are, but mentally they are better equipped to deal with the mortality of human life.

Not sure exactly where I am going with this.  I am OK with the fact I have/had it, and need to deal with the chemo, but I wish there was some way to make it easier for others to deal with, not just my own family and friends, but people who feel lost.

Been feeling rather good this round of chemo, which I am very grateful for, but not in the "Holiday Spirit".  Maybe because the extra cash I would have had for shopping has been paid out for medical bills.  Who knows.  I do love shopping during the Christmas Season for others, I love seeing things I know they'd like and getting them, but I think most people do.  Just gotta watch the budget a bit closer this year.  No biggie.

Got to get a tree this weekend, and hopefully get some baking done, but it depend on how I feel.  If I feel like I do now, shouldn't be a problem, but come about noon time it will be nap time, chemo kinda tires you out the day you get it for a few hours.

At least it is the way it is with me.

Enough rambling and going on, so we'll see you next time.

An Interesting little artcle by David Haas regarding Caner and Recovery

David is an advocate for Cancer Patients.

If you'd like more info let me know and I'll pass on your email addy!

Day One, Cycle Five

Actually if my white count was better last Monday I would have been doing this post then, but since my white count wasn't where the doc felt comfortable giving me the chemo it got put off for a week.

On my "10" day appointment, (you go in the office for a visit with the Nurse Practitioner and blood count) my immune system was in the tank.  That surprised the Nurse Practitioner, since I felt great, had good color.  I was put on this antibiotic for ten days to give my system a bit of support.

Come to think of it, I am surprised a bit myself since a couple of the guys weren't feeling good at work.  But what ever, I still felt great and made it through the cycle without going to the hospital.

Oh yeah, one thing I did was make a batch of orange vanilla cupcakes with pale pink and blue butter cream and heart cut outs of white fondant for Debbie (she is a friend and FANTASTIC nurse at Mary Washington, 4th floor)  Yes, she is PREGGERS!!!  I hope it is a girl.  She'll have two wonderful big brothers, and a Daddy every boy fear.  :D

Anyway back to this mess.  So my original schedule would put my third and final cycle the week of December 26, but the office is closed on the 26th for the holiday.  Which means this may drag into 2012, which doesn't thrill me a whole lot, but it is a quick way to meet my out of pocket expenses and deductibles (still have the $40 an office visit copay). 

I don't know, I guess I was hoping to start the new year off without chemo, but it is what it is, and I may end up doing chemo the first week of the new year.  Hell of a way to start the New Year, but oh well.  Just remember Valentine's Day 2011 I was starting chemo, so it really isn't a big deal.

Oh, I just thought of something.  It would be a hoot to go to a New Year's Eve party bald.   You know, get all dressed up and put a polish on the chrome dome. 

Yes, no hair again, hell last Monday I was at work, bored and I ran my hand through my hair and came out with a bit of hair, then I started plucking my hair, got a little pile on my desk, looked at it and said "Ew, that is such a gross thing to do!"  Swept the pile of hair into the trash can, and a few minutes later started it all over again. 

It was like when you have a spot that is a bit tender when you touch it, but you can't help touching it.  You know you should just leave it alone, but you just can't stop yourself.  An OCD thing maybe.  Like when you have a scab and one day start to pick at it, you can't help yourself once you start and it is super hard to stop yourself.  Yes, I am off my rocker a bit.

I am stuck here at the ski lodge (Hematology Oncology and Associates where I go for chemo looks like a ski lodge)

This is what I get to sit next to in the lobby.  When you walk in it feels like you are going to register for your room at the ski lodge.

In the back where you get your chemo, there are huge windows over looking a wooded area, you expect to see a lift.

Beautiful place, if  you have to get chemo may as well be somewhere that is pleasant.

Speaking of, Doc couldn't make up his mind whether he was going to hospitalize me for my chemo or keep doing it as an out patient.  Since I did so well during Cycle One, I am staying as an outpatient.

Today is my longest day of the cycle.  I won't get out of here till about 3.  Day one of the cycle is the longest.  Tomorrow it will be shorter by 1/2 hour, and the same for Wednesday.

Have to decide when and where to get the Christmas Tree, and what weekend I'll do the power baking.  Not the weekend of the 17th/18th. 

Oh well, feels like nap time so I am going to take a nap. 

Ciao for now!

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.

Day 1, Cycle 4

Well so far so good, I am bored to tears, it is 12:53 and the ifosfomaid isn't done yet.  Been here for 3.5 hours already.

Well, one of the good things is that the Emend that I used to have to get a prescription filled for is now available as an IV liquid.  That is a good thing, because my deductible on it was $25 for THREE pills.  Thank God for insurance!!  If I didn't have it the cost would have been $375 for three pills.  And yes they are worth every penny.  It helps stop the nausea and vomiting.  Trust me, if you every went through chemo and experienced it, you'd pay just about anything to make it stop.  Better to prevent it.

My chemo schedule is 5 days on (not counting weekends) and two weeks off (again not counting weekends).  So Nov. 28th I'll be here, and Dec. 19th.  Yeah me.  My Christmas gift this year is my chemo ending on Dec. 23. 

I am afraid that my Christmas baking is going to suffer, but maybe not.  We will see.  You never know.

My white count was down today, 3.2.  Not enough for them not to go on with the chemo, but a full point lower than the last time.  The nurse questioned it, and I told her that I had just finished up radiation on the first, which explains the drop.

The very first treatment on Feb. 14 (didn't I get the best Valentine's Day gift?) I felt fine.  Right now I feel a little fuzzy around the edges.  I'm not sure if that is a good thing. The dosage is suppose to be reduced.  Didn't react all that well to them the first go round.  Hell, the second day I am taking an ambulance ride to the hospital.  Shit, I rode in an ambulance several times between February and May.  Let's hope that doesn't happen again.

One of the patients had a reaction to a drug, difficulty breathing.  The staff here at Hematology Oncology Associates of Fredricksburg took it in stride, reacting with calm, and getting the patient comfortable and able to breath normally.  Now I know how the other patients felt when I crashed and was hauled out on my second day.  But it is nice to know that the staff here know their job, and emergencies are dealt with swiftly and calmly.  Their calm flows over to the other patients.

I wanted to go to Costco to pick something up after this but I think I'll just go home and sleep off the fuzzy headed feeling.  Maybe I can con someone into going and picking it up for me.

What sucks is I have no vacation time left, and if I miss a day of work, I don't get paid.  Sucks eggs in a closet.  If I miss 8 days in a row I qualify for short term disability, but that is 8 days no pay.  Don't know about you, but my paycheck is my life line.

That is one thing Cancer patients all share, cost.  Even with insurance, and THANK GOD I have some the costs can get out there.  Just to give you an idea, every week I do chemo it is $200,  Every walk into the doctor's office is $40.  Which isn't much unless you keep repeating the visits,  Not to mention the prescriptions. 

So why did I say something about the cost?  Just to give you an idea, so if you know someone who is going through medical treatment and venting.  Let them vent please.  It can be very depressing to some.

In 2003 my insurance ran out and I had to make choices, like do I visit the doctor and get the CT scan or do I save the money and pay the mortgage.  Yes it gets to that point for some people, and no I am not at that point.  I just want people to be a bit more understanding for people with major medical issues when it comes to funds.

Yes, there are grants and help available but you have to search and find it, so for some people if you spend a bit of time searching, it could be a great help to them.

Unfortunately, some of the cancer stuff is very specific as to the type of cancer, mine is rare so there isn't anything out there.  But like I said, right now I am OK, and I think things will be alright. 

But there are other people out there people with cancer, heart problems, lung, major medical issues that are choosing do I pay the rent or get treatment?  Do I buy food or medicine? 

HELL, many senior citizens are faced with that type of choice, many veterans, and that my friends is a fucking shame.

So here is my holiday season challenge for you.  All the grocery stores seem to be doing the buy a bag thing and donating it to food banks, so buy a bag.  If all you do is donate $5 every shopping trip you will make a huge difference.

You can do the same for  homeless shelters, animal shelters, you name it.  Pick four charities that speak to you, one for each week of the month and donate $5.00, hell donate only one dollar, it is all the little donations that add up to BIG miracles!!!  Be a part of a big miracle!

Just remember the little pennies add up to dollars, and the dollars add up to thousands and the thousands add up to millions, but that doesn't happen without your help to start it.

Please help others this season.  Even if it is only a dollar at a time.

And Here We Go Again!

Well, radiation is over and done with.  Last day was November 1st.  YEAH!!  Even got my certificate of completion.  Hugs from all the technicians.  Got told they love me, but please don't ever need their services again.  Sorry guys can't guarantee that.

Actually I am happy because the last time I talked to Dr. Chinault I miss heard him.  They increased the radiation for me the last five treatments.  Not as high as he wanted because he didn't want to damage the biracial (I do believe that is the name, and it is spelled wrong) nerve.  The nerve that controls the right arm.  If it were damaged I would end up with constant pain in the arm for the rest of my life.  Not a good thing if you are right handed and like to decorate cakes.

The misunderstanding, he said that I was going to get 5 less treatments.  I'd get thirty instead of thirty five.  Some how I heard I was going to get sixty instead of sixty five.  Made me go huh??  But it all got worked out.

So now the area that got radiated is tanner than the rest of me, and dry.  I mean leather feeling dry.  Reminds me of how a young girl I worked with looked.  She was only twenty and loved being tan tan tan.  She spent every other day in a tanning bed.  The skin under her eyes was so dry, and it made her look older.  Sad she didn't see it. 

Hey, I know a tan can make you look better, but you have to be sensible about exposure.  Too much of a good thing damages you.  Me personally, I'll stay kind of pasty white.  Keep my "youthful" appearance, ROTFLMAO! 

They put the second port in Friday.  Had to be at the hospital at 10:45 and the "surgery" was at 12:45, except my doctor had a case before me and it ended up going on longer.  The nurse told me that the person he was operating on was initially suppose to have a tumor removed with laparoscopic surgery (is that even spelled right?) and ended up needing to be opened up. 

Knowing Dr. Flynn, he had already warned the patient that it may happen, and hopefully they went under expecting it.  All I know is I hope they are OK and they couldn't have had a better surgeon.

Oh yeah, Dr. Flynn is the only one (other than Jasmine and Michelle) who noticed my hair was a different color. (Well Jasmine and Michell saw all the color changes last weekend)

Yes, changes as in plural.  Hey, my hair is going to fall out anyway, so I figured I'd try bleaching it to a platinum blond.  You know that white color, my hair is coming in white not grey (yes I am old enough to have grey/white hair.)

Put the bleach on the hair, tips first then ends, applied heat, did a second process, and even a third.  My hair ended up being a very light coppery red.  Not a good color for me, so I picked a reddish brown, that turned copper orange. um yeah, that color ain't happening either.  So Jasmine went with me and I picked out a medium brown that had cooler tones in it.  My hair is very close to original with reddish highlights.  All that to end up where I started.  Just the white hair is all gone.  And no it isn't fried either.  I was blessed with some thick ass, super healthy, put up with anything hair.  Have had it all my life.

I am already wishing it were the end of chemo, but I think that should be expected, my last three rounds of chemo landed me in the hospital on a regular basis, and the one time I was in bad shape.  Took three blood transfusions plus three plasma transfusions to get back to almost normal.

But to me going through chemo is better than saying I give up.  I'll never do that.  I am a realist when it comes to cancer, it is a lifetime battle for me.  The kind I have comes back, it did, and this time it was in several places in my body, each one popping up at different times.  Several types of cancer do that.  Just because it does that doesn't mean it will always keep coming back, but it means there is a chance.  Just because they didn't get good margins doesn't mean it is still there, but there is a chance. 

I really haven't set down with Doc and asked about odds or anything like that.  The last tumor was attached to the main nerve that controls the right arm, and even in taking a couple branches of it (yes I can tell a difference, but the human body is amazing and other muscles are compensating for the lack of control of the ones that have no "nerve connection").  He didn't get good margins at the point where the tumor was attached to the nerve.  He thought he did, but the pathology lab said otherwise.

So chemo is a required preventive in my opinion, so was the radiation.   Hey nerves are connected through out the entire body, and the two ways to travel in the body at top speed are the nervous system and the circulatory system.

I will admit I am a bit concerned about the port.  It is red  and tender, but that may be because it was only yesterday that they put it in.  Oh yeah it is on the left side this time. and I have to keep it in for a year. 

If the redness and tenderness gets worse I'll be on the phone with Doc.  But for now I'll just keep an eye on it. 

I have a couple of birthday cakes to do so I really can't let it get in my way, at least at this point.

Oh well, off to the store, I need raspberries to make raspberry sauce.  One cake is going to be chocolate with raspberry filling, butter cream frosting.

Have a great weekend folks!