Tuesday, December 17, 2013

Finally new information

Hello everyone!

I know it has been a long time since I wrote anything but there has been nothing to report.  But there is now, finally.

After fighting for weeks with the insurance I finally have coverage and my treatment could proceed.  Although I was supposed to have coverage starting Nov 1 the insurance (Blue Cross/Blue Shield) did not get me in their system until Dec 1.   (But they got their premium, but that's a different story).  Big push for me was my doctor was leaving Dec 4 until Dec 26 (out of the country).  She needed to write orders but didn't want to do it until insurance approved treatment or I would have to pay all of it.

So, finally, yesterday I had my first chemo treatment.  I was told I would see a pharmacist, learn about chemo and it's side effects and get my first shot.   I guess I was naïve but I expected to be in a room, like an exam room.   Instead they took me into the chemo area.    For those of you who have never been there (and I had not) let me explain.   At Stephenson Cancer Center at University of Oklahoma Health Sciences complex it is a very, very large area.  It is then divided into sections with 8 places for patients, complete with nice recliners and an IV pole for everyone.  You can have one visitor with you.  A nurse is assigned to you for the day and she also has other patients.  

When we walked in there were 2 other patients.  One lady appeared to be pretty ill.   We did not visit with her.  The other lady was a younger woman.   I just started crying.  Could not hold back the tears.   It really hit me.   I have cancer.   Yes, I have been blogging for months about this and I thought that I had really gotten a hold on it and my emotions.   But there is something about walking into the Chemo room that really got to me.   It took almost 30 minutes for me to get it together.  But then I was OK and started visiting with the younger woman, who was near me. 

She is 44 year mother of a 3 year old.  She has cancer that has spread to her liver and has already had surgery but still has tumors.  She will have chemo for the rest of her life.   Then a 35 year old mother of two, ages 3 years and 6 months, has brain cancer.   They are both very upbeat and it was encouraging to me. 

Just before I left a man probably in his 60's spoke up and told me he was getting the same chemo medicine for the same type of cancer that I have.  He is on his 3rd cycle and said he has had no side effects.  That was also encouraging.   

I was feeling a little dizzy when I left and a little light headed but thought it was because I had not eaten lunch.  We went to Golden Corral to eat.  By the time we got home I had a touch of a headache which got worse as the night progressed.  I went to bed about 9 and watched some TV propped up on two pillows.

I took one benedryl and one over the counter Iubeprophen to help me sleep.   When I got ready to go to sleep and took the extra pillow out I got so dizzy.   Couldn't close my eyes because my head was spinning.   Couldn't keep my eyes open because the room was spinning.  I was also very hot.   Had Keith get me a cold washcloth and put it on top of my head.   Guess that was the 'flushing' side effect.  I put the extra pillow back and finally got to sleep.   Then woke up when Keith came to bed and moved down to the other pillow in small steps.  I was able to go to sleep and no dizziness.  Got up about 4 this morning feeling fine.

I am sure I will have to take a nap sometime today.

I have increased uric acid levels so they put me on Allopurinol.   I took one last night when we got home and another this morning.   I have to go have another blood test about noon.   If the levels are dropping then I just have to finish taking them for 10 days.   Otherwise they will give me an IV dose this afternoon after they get my blood results.

Thursday I have an appointment with a Neurologist.  This is to evaluate the pain that I have as a result from post polio and the bulging disks in my low back, neither of which is related to the cancer but they don't want to not address the pain.  Maybe he can give me something for the arthritis because I know what that is.

Thursday afternoon, after that appointment, I have chemo again.  Chemo again on Dec 23 and Dec 26.  Then I have no chemo the following week.

A cycle of this chemo is 21 days.   Day 1 and day 4 I have chemo, day 9 and 12 I have chemo.   Then no chemo for the rest of that 21 days.   Then the next cycle starts.

My next appointment with my doctor has been moved to January 2.  Every time I get chemo or see a doctor they will draw blood.   Guess I have to get over my hatred of needles, huh.   If I was getting my chemo through an IV I would have a port and they would draw blood from there.   However, I just get a shot.   But I am good with that.

At some point I will get a port just before I have my bone marrow transplant.   My granddaughter, Cassidy, graduates in May and we are hoping to have me able to go to the graduation.   I have to talk with my doctor about this when I see her in January.   Maybe I can get back to work before a full year. 

I have been hired at H&R Block for the tax season here in Midwest City.   It is only 3 miles from home and they will work with me on my schedule to accommodate doctor visits and chemo.   Of course, if they schedule the transplant before April 15 I will have to quit but I have told the manager about it and they are understanding about it.

We had Thanksgiving 3 days in a row.   First was with our son, Paul's, family.   Full dinner.  Daughter in law is good cook and her mother and brother were there.   Friday we were at daughter Tammy's.  Again full dinner and as usual it was delicious.  She is also a good cook.  Saturday we had all our kids at Tammy's house.   We had soup and pizza.  It was really nice.   All of the kids were there except our son Robert who lives in Texas and was unable to attend.   We took lots of pictures and did a lot of visiting.

That's about it.  More later.  I have to eat breakfast so I can take my 10 steroid pills.   Always something.


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