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!