Monday, April 24, 2017

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.

Monday, April 3, 2017

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.

Saturday, April 1, 2017

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.