Pain and other stuff.

I have been in a deep, dark hole for more than two weeks due to agonal pain in my left buttocks, a reaction to chemo, and a bunch of other stuff.  I apologise for not writing, but writing was the last thing on my mind.

My PMD has been trying  to get me into the Palliative Care Center for the past 10 days without success.  Friday she gave up and referred me to a private Medical Pain Specialist.  Today I called his office, and his "system is down" so they can't make any appointments;  besides which, the office manager knows for sure they don have any openings for the next two weeks.

I may take the route suggest by the PA C at the pulmonologist's office and go to the ER and literally show my butt.  He said he almost didn't recognize me in his office as the same person he saw in the hospital.  I reminded him he had not seen me when I was not getting IV morphine on a regular basis.

People, I have exactly one place I can sit and be comfortable.  That is a big, cushy, lounger in my daughter's TV room, and then only with my feet up.  I cannot sit in this freaking chair for the rest of my life.

To top all this off, I had another massive reaction to my chemo.  I had chemo last Tuesday, felt good on Wednesday, crashed on Thursday, went to the office on Friday for extra fluids and IV meds; and just felt like getting out of bed today.  The Oncologist doesn't remember ever having a patient who just can't wake up enough to get out of bed.  In fact, one of the most frequently reported side affects is sleeplessness.  Of course, he never had me as a patient.

I am up today, and feeling good except for the pain in my buttocks and pelvis.  I have the best husband on earth, and my family is amazing.

I am blessed.

I will survive

I have survived the last seventy-two hours, which convinces me I will survive chemo, regardless what my body tries to tell me.

I had some really rough side affects to my chemo, including severe lethargy, loss of appetite, dizziness, nausea, and bone pain.

I couldn't wake up.  I slept for almost forty-eight straight hours, waking up only for nature calls.  Lifting my head off the pillow made my head swim.  One minute I was sweating like I was out in the sun in August, and the next I was freezing.  The very thought of food was sickening. I think I got way behind on my water intake, but if you won't tell Dr. Sherman, I won't. 

Today, about Noon, I started feeling better.  After a bowl of homemade soup and some ice cream, I knew I would live.  Tonight I got a bath.  That bath rates right up there with the top baths I have ever had.

About 2 PM the doctor's PA  called and told me I would survive, even thought I was having side affects they had never encountered before.  That doesn't surprise me.  I never do anything like other people do.  He decided that from now on, about three days after chemo, I will come to the office for IV fluids and anti-nauseants.  That's good by me.

I can fight a good fight, as long as I know the rules.  There don't seem to be many rules, or maybe the cancer is making up the rules as we go.  Good thing I'm a fast learner.

I am blessed.

Another Tough Week

I just spent another five days as a paying guest at Memorial Hospital West.  This is not one of my favorite places to spend time, even though the level of care is excellent.

Monday night I started feeling like I wasn't emptying my bladder completely, but didn't go to the ER because I had an appointment with Dr. Taub Monday morning for my first chemo with him.

At his office we got the infusion going and I noticed I was getting more and more uncomfortable.  Macho Man and I waited to speak to the PA after my infusion, and he told us we had a choice, either call the urologist, Dr. Sherman, or go to the ER.

MM went to get the car, and when I stood up to transfer from the scooter to the car I totally lost control of my bladder. I called Dr. Sherman, and he was out of the office for the day, of course, so off to MHW ER.

It didn't take long to get in the treatment area, 1)  I just had chemotherapy, and 2)  Urinary retention is a medical emergency.  I never thought I would hear myself thanking someone for putting a Foley catheter in me, but I was thankful for that one, let me tell you! And, of course the urine was bloody.

Then started the never-ending tests, this time including an MRI with contrast to rule out metastasis to the spinal cord.  It was negative, thank God.

Admission was to the 6th Floor, where I got excellent care.  The catheter came out Thursday, but they were a little afraid to send me home until it had been out for twenty-four hours.  Dr. Sherman told me to pee in the dark so I couldn't see the blood, and to drink a gallon of water a day.  So, I got home about 8:00 PM last night.

I found out more about my therapy.  I am now getting a biologic agent rather than traditional chemotherapy.  The medication boasts my immune system so that it attacks the cancer.  It is approved by the FDA for the treatment of bladder cancer, and I am good with it.  It has fewer side effects than traditional chemo.

I sincerely hope this is the last time I end up in the hospital, although that is probably too much to ask.  

I am blessed.

Back to Square One

I finally met up with my new Oncologist, Dr. Taub.  I like him much better.  He is very clear with what his treatment plan.  He is aggressive and he is clear about what he can do, and what he can't do.

I say we are back to square one, because Dr. Taub is starting a new chemo routine of high dose chemo given once every three weeks.  It is cancer specific, and attacks the malignant cells, but not the healthy cells. 

Dr. Taub didn't hesitate to up my pain medicines, and finally my pain is pretty much under control.  There's not much we can do for the nerve pain, but I am going to start a combination of B vitamins that is suppose to help.

I am having an access port put in this week.  For those who aren't familiar with ports, this is a semi-permanent way to give fluids and draw lab specimens, etc, without having to look for a vein every time you need access.  It goes through a large vein into the heart.  This is how I will get my chemo without burning up all my veins.  After I finish chemo, they can take it out.

I thought the other Oncologist, Dr. Zafar, was radiating both my pelvis and the tumor.  Guess what, not so. She was just radiating the pelvis. We will probably start radiating the tumor pretty soon, because Dr. Taub was a wee bit irritated that she didn't do that.

I asked Dr. Taub if I could travel, because I really, really want to go home.  He says travel is very risky and he doesn't recommend it.  I may go anyway.  

We have figured out a way that Juan can travel without me, between treatments.  That makes him happy, because he is super homesick.

It seems that after a rocky start things are finally coming together.  

 I am blessed.

I am in the process of setting up a Go Fund Me Account. This is particularly difficult for me, as I was reared in an old Southern family with more pride than anything else, and  Macho Man was reared in the same mindset.

Cancer is a very expensive disease, especially when you are on a fixed income.  My insurance  is paying most of the bills, but the co-pays and the other incidental costs are eating us alive.

I hope I don't offend anyone with this plea.  I promise you all the monies I raise will be used wisely.  I thank you if you contribute.  I understand if you don't.

Living normal

This weekend we had a taste of normal life.  Fun life.  Life without stress or tears, or medicine, or anything but living and laughing.

Elisa came home from work Friday ready to go shopping, and they were having a great sale on dresses at Ross, so off we went.  I came home with one new blouse, four new dresses, a Capri length jumpsuit, and two pair of shoes.  I feel like a fashion queen!

Saturday Macho Man decided to take me out for a long drive.  I put on one of my new outfits, and off we went to see if the Aruba Beach Cafe was still open and still the fun it was twenty years ago.  It was and it is.

On the way I decided my new outfit needed a little bling, so when we spotted another Ross, in we went.  The first thing I spotted was a hat that matched one of the colors in my dress.  Gotta have that hat! And a tassel necklace and earrings.

Now, off to Aruba Beach, where the Reggae was playing and people were dancing, eating, and having fun.  We weren't dancing, but we sure were eating and having fun. 

The food was great.  MM had coconut shrimp. I had a seafood quesadilla that was to die for. We shared an order of baked escargot that came with a heavenly loaf of French bread fresh from the oven, crispy outside and perfect inside.  Yum!

We took the long way home and got to Elisa's just in time to join her with Paul's family for some cookout! It was wonderful.

Today, we went down the road to a local Sunday farmer's market, where we picked up some beautiful produce.

Normal people, doing the things normal people do.

I am blessed.

Loss of self image

 One of the things we struggle with as humans is self image.  We work on that until we find a place we're comfortable.  My self image is that of  a strong, independent, self-confident woman, ready to take on the world.  Boy, is it taking a beating.

I can no longer walk without a walker.  I cannot get into the shower without help, and someone has to stand by to make sure I don't fall.  I have had to learn to perform bodily functions in front of strangers, and have those strangers clean up after them.  Macho Man has to help me dress.

Last night, I fell.  That shouldn't be a big deal.  In the past, I would have gotten up, dusted off, and been glad nobody saw me.  Last night was different.

I literally "fell and I couldn't get up".  Macho Man couldn't get me up because I fell up against the door and got wedged between the door and the dresser.  I was really helpless.

I ended up crawling on the floor like a baby until I could get to the bed, get up on my knees, and launch myself onto the bed on my belly.  How embarrassing!

I will certainly have to polish off my self-image. How do I learn to let others help me? How can I reclaim my confidence, when I'm always afraid I'm going to fail in some way?

Fortunately, I have a good network of family and friends.  It won't be easy, but it is doable.

I am blessed!

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.

   

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.

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.

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.

Step by Step

Today I went to visit the oncologist, Dr. Zafar, and set up the treatment plan.  It was scary.  I will lose my hair, what little bit I have.  There is a chance it will make me nauseated, and I start it Wednesday.

Dr. Zafar uses cisplatin in conjunction with another drug which I can't remember.  I will take it IV once a week for 3 weeks.

I used the walker last night to get from the bed to the bathroom, and it was a challenge.  I'm thinking more and more I should bring the Scooter in and use it.  

At least Dr. Zafar seems to understand that I can't fight the cancer if I am fighting the pain, so she wrote me a prescription for  a Fentanyl patch, which she wants me to use along with the Percocet I already have.  Of course, when Juan went to the pharmacy, they wouldn't fill the Rx because they say she didn't put how many patches to dispense.  Sooo, the pain control plan has been delayed until I can go by her office tomorrow.

This pain I am having is incredible.  It is a result of the pelvic fracture, and it feel like I have a knife sticking in me from just above my left gluteal fold to hip level.  It is intense.  I would rather have babies.  

Then there is that pesky referred pain that goes down my left thigh every time I make a step. And the spasms in my bladder which are pretty much under control.

The bleeding from the cancer seems to have stopped for now, and my hemoglobin has risen from 10.3 to 11.2. That's a good thing.

Tomorrow, I have an appointment with my PMD, Dr. Hirsch, so he can write all my referrals and get permission from the insurance company to start the chemo.

This has nothing to do with my journey, other than it's an aggravation I don't need.  When we picked up our rental car at the airport, we were told we could return it to any agency without a drop off fee.  We were also told we could extend the lease at any agency...NOT.  I did get the lease extended online, but we do have to return it to the airport.

Today has been rather stressful, but it ended up with good company, around a fire pit, eating S'mores.

I am blessed.

Day By Day, A Litte at the Time

Imagine going to the ER for one thing, and finding out you really have something else. What if that other thing is cancer?

Macho Man and I found ourselves in just that situation this week.  Tuesday morning while the medical staff was working me up for a broken hip the found that was the least of my worries, because what I really had was a broken pelvic bone caused by a big, ugly Stage IV bladder cancer that has spread to the bone.

I am at my daughters home now, after five days of exhaustive testing to find out where we are now, and where we are going.

Where we are is pretty simple.  I have bladder cancer.  It is Stage IV, with metastasis to the left pelvic bone.  It is inoperable, because of the overgrowth of blood vessels, making it very possible I might bleed out during surgery.  There is nothing we can do with the left hip fracture until we can do something with the cancer.

Where we are going is something else.  Monday I meet with the Oncologist to work up my  chemo and radiation treatment plan.  Then I have to meet with the Pain Management Team, to work out my pain meds, keeping in mind that I can't get some of the pain meds they use while I am in Honduras.

Right now the overview is that I will start chemo and radiation here in South Florida, then continue treatment in San Pedro Sula.  I will go the chemo route as long as it seems to be shrinking the cancer.  When it is no longer working, I will stop and let go.

We are all grieving in our own way.  I am at peace with the diagnosis.  I am not afraid of dying.  I am afraid to leave Macho Man.  Thirty-one years with him, and  I'm not ready to leave my life as it is.

I want to see Victoria finish her education, get married, have babies.  I want to have a good relationship with my granddaughter, Rachel.  I haven't seen Rachel, to be with her, in over twenty-five years.  I want to meet her children.

There are so many things I want to do,  places I want to go, things I want to see.  And I'm going to do and see some of them.

Macho Man has been so wonderful helping me with everything, from getting a shower to getting to the dinner table.  He holds me tight when the pain attacks and will not let me go. And he cries when I cry.

I will fight day by day, step by step.  One of the ways I will fight is to update you when I can.  I invite you to take this journey with me.

I am blessed!