Tuesday, February 21, 2017

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

Saturday, February 18, 2017

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.

Thursday, February 16, 2017

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.

Sunday, February 12, 2017

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

Wednesday, February 8, 2017

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.

Monday, February 6, 2017

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.


Saturday, February 4, 2017

This Ain't for Sissies.

I woke up this morning with every bone and muscle I have screaming at me.  I felt like I was having the worst case of flu ever.  Dr. Zafar warned me this might happen, but she didn't tell me it would be THIS bad.  This is due to the bone building medication I got IV Wednesday.

The visiting nurse came out about noon to make a home visit and to set up their treatment plan.  She seemed nice enough.  She ordered the home PT and OT.  We agree that Dr. Zafar needs to up the pain medication.  In the meantime, I hurt.

If I keep writing tonight, I will start whining. 

Thank you for listening.

I am blessed.

Thursday, February 2, 2017

Little by little, we have a treatment plan

I woke up this AM a little nauseated, but not bad. On a scale of 1- 10, with 10 being the worst, it was about a 3.  The medication works pretty quickly, so I was functioning after about 30 minutes.

Then we left for the oncologist's office for the last visit of the week, for hydration and to finalize a treatment plan that works for all of us.

We have decided I will have a baseline PET scan this week, then complete a 6-week cycle of treatment. Then I will have a repeat PET scan to see if we are making progress.  If we are making progress, I will take a short break and go home to Honduras. I will then come back to Ft. Lauderdale and start the process again.

This keeps me with one set of doctors rather than juggling care with two groups.  It gives Elisa and her family a break from us and vice versa.  I can have faith that I'm getting the same quality of care and meds.

We are just in the beginnings of this mess, and already it is apparent that it is going to take a toll on all of us.  Both of use are a little edgy.  Juan is not used to taking care of me completely, and I am not used to needing round the clock card to do even the simplest things. 

Elisa's family routines are interrupted.  Victoria has made herself a "studio apartment" with an air mattress, shelving, a lamp, and other comforts of home in a corner of the living room.  I'm sure she misses her privacy.

So far we are making it work.  We have your prayers.

We are blessed.

Wednesday, February 1, 2017

Drip by Drip

I didn't post yesterday, because, well, because yesterday was a rotten day.  The only two good things that happened yesterday were 1) I started the Fentanyl patch; and 2) I survived it.

Today was a different story.  I woke to very little pain and I was able to get out of bed without help.  That was a wonderful feeling.

I got to chemo ten minutes late, but it didn't seem to bother anyone.  After a few minutes I was lead to a room lined with huge, wonderful recliners and some of the most positive people I have ever met.  And those were the patients.  Everyone appeared happy and wanting to get on with life.

We finally got the solutions running, four different meds, one at the time. First was a medication to get my body ready for the shock of chemo, the second for nausea, the third the chemo itself, and the last one a bone builder.  It really wasn't bad, it just took 3½ hours. 

We came home, I took a nap, and I awoke almost completely pain free.  I was a little nauseated, but took a magic pill, and thirty minutes later I was eating a big supper and drinking coffee.

I go back tomorrow for hydration and a visit with the oncologist.  Then I do another chemo on Wednesday.  So far, so good.

I have a great family, doctors I trust, a super support network, and an awesome God.

I am blessed.