8 Days a Week

Well, I just got out of the hospital after eight long days.   Again, it wasn't the doctors who saved me, it was the great NURSING STAFF.  

The good news is, I have a good, strong heart.  The bad news is, I have suspicious nodules in my lungs, consistent with spread of the cancer.  

I have a new Oncologist.  I hope he is going to be more aggressive.  I meet him in the next week.  I also have a Pulmonary man, a Cardiologist, and the same old Urologist.

Dr. Sherman decided he couldn't march through Georgia, nor burn me, so he is still trying to drown me.  A gallon of water per day.  A GALLON.  Try drinking that.

It was eight days of torture.  Every test known to man, and a few they made up.  I had one incidence where the RT overdosed me on broncho-dilators, and I couldn't breath.

Then I had the grandmother of all panic attacks.   I couldn't breathe.  It felt like a strap around my chest, pulled tight.  The nurse was trying her best to reposition me, talk me down, whatever, when in pops cheerful Dr. Sherman.  He says, "How are you doing today? Are you drinking a gallon of water a day?....."  the nurse is saying, "She's having difficulty breathing!"  I'm trying to say, "I can't breathe!".. Without breaking a sweat, OR taking out his stethoscope, he says, "Oh, I'll come back tomorrow and fuss about the water."  Who WAS that man?

After deciding that yes, the patient IS having a panic attack, the nurse decides to get an order for a sedative.  So he, yes "he", gives me a 1 mg tablet of Ativan.  That's all it took to knock me out for the next 24 hours.  To the point, Macho Man said he didn't think he would ever get to see me awake  again.  It was crazy.  I was talking out of my head, to people who weren't there.  I don't want anymore Ativan, ever.

Well, at least it is under control for now.  I feel good.  The pain is gone.  I can get dressed, with help.  I can drink REAL COFFEE.  I have great friends and family.

I am blessed.

Chocolate Covered Strawberries and Other Things

Some days things happen that make you think angels DO exist.  Like today, when I was feeling pretty low after having a big spasm of pain after therapy.  Like feeling really down, with a pity party in full swing.  And taking a nap, and waking up about 6P when UPS showed up with a dozen chocolate covered strawberries.  

Wonderful fresh, ripe strawberries, four covered in white chocolate and sprinkles; four awash with thick, rich dark chocolate with nuts; and four drenched in milk chocolate with crunchies.  Twelve luscious, succulent, sexy strawberries that explode with sinful flavor and juiciness.  

And no card.

UPDATE:  Now I know who sent them.  It will remain a secret

  

Today Was a Good Day

Today was a good day.  No, it was a wonderful day! Today I did nothing "medical".  Today, I was normal. Today I felt like a real female.  And it was the little things that did it.

My wonderful daughter thought it would be great to have a girly day, so we decided to get a haircut and have a pedicure, and also get eyebrows waxed.  There was just one problem, which we discovered on the way out the door.  Victoria took her car to work, and the scooter was in her car.

Macho Man to the rescue!  He took a couple of measurements and discovered that the wheelchair would fit in Elisa's car, and so would the walker.  Of course, he had to go with us to provide muscle.  So off we went.

First stop was at the hair salon.  The owner, Dennis, decided to do my hair.  I told him short and spiky so that when I start losing it, it won't be such a shock.  Well, he went to work.  Now I don't want to say it's TOO short, but it's pretty close to being a buzz cut.  That's okay, I like it!

Next stop, the nail salon, where we signed in for our pedis.  Oh, how wonderful!!!  What a great massage to my feet and legs.  How wonderful to be petted and pampered!  I may have been in a wheelchair when we left, but I was dancing on air.

I had a day of very little pain.  A day where I was treated like a woman.  A day where my sweet hubby sat in two different beauty salons, him a macho Latino, waiting for me so I could be pampered.  A day where my wonderful daughter and I could laugh and giggle like normal mothers and daughters.  A wonderful, blessed day!

I am blessed.

Again, It Ain't for Sissies

She's still here!  There have been times she's wished she wasn't, but she is. 

I have now had three IV chemo and three radiation treatments, and we care finally getting the pain under control.  The spasms have eased up, and there is less bone pain.

It has been a tough three weeks.  It's been tough on my husband, and it has been tough on my family.  They have been forced to contend with things that no one should have to go through.  

There have been crying spells, there has been great depression.  There have been spasms of incredible pain where everyone feels helpless, because no one can do anything. 

I have never felt sicker, or more helpless in my life.  I cannot dress or bathe myself without help.  I cannot move my left leg without help.  I cannot turn over in the bed without help.  Me, who has always been independent and self sufficient.  Me, who has always been the nurse, now needs  a nurse.  I don't know who I am anymore.

Cancer is a horrible disease.  It affects everyone connected to the patient.  It devours them.  No wonder so many families fall apart because of this monster.

I have Macho Man, who has been right by my side.  I have my wonderful daughter, Elisa, who works her heart out every far-reaching, then comes home every night and cooks and cares for me.  I have her patient, loving hubby, Paul, who is gracefully watching while his home is being turned into a hospital. There is Princess Baby Girl, Victoria, who not only has turned her bedroom over to us, but has given us her car.  Then there is Tommy, her boyfriend, who has become her chauffeur so we can use her car.

I am blessed.

Updating..I'm tired.

I took a couple of days off because I am tired.  I am really, really tired of having to be somewhere every day, on someone else's schedule.  And it going to get worse, I know.  It is very hard to describe the tiredness that overtakes you in a time like this.  It is overwhelming.  It is a tiredness of the mind, the body, and the soul, and it drags you down into the abyss.  It colors your whole life.

So, what did you miss?  Not much.

On Thursday, we saw Dr. Worth, the orthopod, and he signed off on the case.  There is nothing he can do for the hip and/or pelvic fractures until after the cancer treatment is complete.  He is available as needed for overseeing PT, etc.

Friday, we saw Dr. Sherman.  He signed off on the case because there is nothing more he can do.  According to Dr. Sherman, and common sense, the best we can hope for is that the radiation and chemotherapy takes care of matters.  Second best is that I have diversion surgery, removing the bladder and creating a new one from a piece of intestine.  We can't even consider that at this point.

Saturday, we went for the PET scan.  That was long, but I slept through most of it.

Saturday, also, my son Danny and his wife came for a visit.  I haven't seen Danny in a very long time, so that was a real pleasure.  Danny is a Hodgkin's survivor, so he knows exactly what is happening here.  I was so glad to see them.

Today, I slept in.  It was heavenly.  I have done very little since I got up, and that, too, has been heavenly.

I am bl

Sometimes a meltdown is a good thing.

Over the past week or so my pain level has increased, my tolerance for pain has decreased, the pain meds have not been working, or some horrible combination of ALL the above.  

Whatever, last night was a horrible night.  I was unable to stand long enough to brush my teeth.  Every time I wanted to turn over in terms bed, I was howling with pain and crying.  When we left this morning from chemo, I couldn't help myself get into the car.  Juan had to lift me. By the time we got to the Cancer Center, I was hysterical.

The chemo nurse picked up on me right away, and pushed the two bags of medicine as fast as she could, notified the doctor, and pushed me into a private room. Where I immediately went ape.  

Dr. Zafar came in, assessed the situation, and began writing orders.  She was horrified that I had not called her before it came to this.

She has upped the fentanyl patch to 50 mcg/hr, doubled the hydrocodone to 10mg/6hrs, and says if that's not enough, she will up it again.  

She also referred me to a radiology oncologist, Dr. Eduardo Fernandez, so I have yet another person in my corner.  I meet him Monday.  Nuking the bone in my pelvis is supposed to stop the nerve pain in my groin and left butt.

I can assure you, upping the pain medicine worked like a charm.  I can get up off a chair by myself, I can sit without pain, and I feel like a human being.  I actually feel, for the first time, like I really have a chance to beat this.

My Mother always taught me a real Southern lady NEVER displays her emotions in public.  I always told her sometimes you have to let people know how you really feel.  Today I was right, Mother.

Please continue to pray for us. We are blessed.

It's not easy...

When I first decided I would blog about my experience with bladder cancer I had absolutely no idea what a job it would be.  No one prepared me for the weakness, the loss of dignity, or the pain, especially in my bones. The pain has been incredible.  The chemo drugs cause bone pain, and so does the medicine they give you to protect the bones.

All these drugs, along with the cancer itself, cause severe fatigue.  I am so weak I cannot stand alone.  Juan has to get me up and down.  Just brushing my teeth causes me to lose my breath.

Then, there are the "little" irritations...like the PET scan provider called to say they cannot do my scan because my Specialist has not sent my PMD the necessary clinical information to obtain authorization for the PET scan.  God in heaven, I'm dying from bladder cancer.  What else do you need to know?

I have been wondering why my Lyrica, which I take for nerve pain, wasn't kicking in to stop the spasms in my legs and groin.  Then it dawned on me...they ordered me Neurontin, not Lyrica.  They are similar drugs, but different in how they work.  Neurontin doesn't treat nerve spasms the same way Lyrica does.  It's a cheaper drug, and it comes as a generic, so the hospitalist changed my medication.  I wish SHE could sit on a cattle prod while it is activated.  

There is the total loss of self esteem and dignity.  Those of you who know me know I have always been a fighter.  Everything I have ever had I had to fight for.  Now, I'm almost helpless to do even the simplest things.  It's embarrassing, it's demeaning, it's horrible. 

I know Macho Man doesn't mind being the nurse. I mind him being the nurse.  I mind him having to dress me.  I mind him having to move my leg for me.  I mind him having to empty the bedside commode, or help me turn over in the bed, or to get up.

This is not life.  This is misery.  I'm going to complain, scream, holler.  

Even so, I am blessed.