Thursday, September 24, 2015

Total Slacker

I admit, I've totally been slacking over here in the blog world.  It isn't because I'm taking a break from blogging, even though it totally seems like I have.  I have been without internet until 2 days ago and the internet I have stinks.  I mean really, how did we ever live with out the internet, I just don't know how we did it.  I'm waiting on the lines for the better internet company to be placed, which was suppose to be this week and now they are saying it won't be until the middle of October.  So until then we are quite spotty around here and the worst part, I don't get NBC with my new antenna that I had to purchase, however I do get several stations speaking Spanish, preaching hell and damnation and trying to sell me something.

Maybe I've been a bit lazy this week given the fact that I was suppose to be sleeping and feeling awful from chemo.  But come on people, when it is over 100 degree's on the first day of Fall it's just to hot to do anything but sit here doing nothing, even when you have 3 ceiling fans and a box fan going and the A/C is having a hard time making it below 76.  Oh and the weather woman just informed us that today was the 100th day of triple digits this year and the next 5 days promise 5 more!

Plus, mom is here and we find things to do like read books (I've got mom reading the Big Stone Gap Series and she is loving it), making lots of lists of things that we need to shop for and to do before we go to Disneyland on Saturday and Betty my sweet Camry decided to start making a ruckus today on our way to the temple, so we spent all afternoon and evening car shopping, which I hate doing, hence the fact that I've had Betty for over 8 years.

Literally as I was leaving the car lot lights started flickering off and on as I was hoping and praying to make it home before Betty totally died as I backed her into my parking spot.  I backed in because I totally knew she was going to die and am glad I did.   I've been told that batteries die in Phoenix more often than other cities, but come on really tonight of all nights.  I was just grateful we made it home alive and didn't die when I turned on a yellow light and another car was coming right at us.  I didn't want Betty to die in the middle of the intersection.  That would have been totally embarrassing and I would have had to call my Home Teacher who is also my Bishop for help.  I just hope that in the morning when my friend Cathy comes to jump Betty that she starts up and is drivable to the Doctors.  Ugh, cars another reason why I need a husband, but really Cathy and I have been able to do things together like hook up Roku.

Cathy is my friend from High School.  We have caught up a few times over lunch over the last few years when she moved back to Nampa.  Interestingly enough, she moved to Phoenix almost 2 months ago and without knowing moved into the subdivision directly behind me.  It's been fun to catch up and to have another single person to have lunch with, go to the pool with or call when you need help.  Both of us are very independent, but I think we both would agree it has been nice to have someone around that we can depend on when we need help or a buddy to go to the pool with.

So there is a little about the going on's around here.  I promise I'll give you a gigantic Fabulous Friday or maybe Super Saturday in the coming days.  Until then, let's just pray for Betty to give me a few more hours of life!

Tuesday, September 22, 2015

Letter To My Dr's And An Update For You

Dr. Dan, Dr. P and Michele,

Just wanted to give you all an update and get some advice from you regarding what is going on here in Phoenix.

I met with Dr. J on September 8 after having Gemzar and Carbo on September 2.  He felt like the tumor on the vaginal/anal wall was approximately 1.2-1.5 cm, which means it has shrunk given Dr. P and Dr. G felt like it measured 2.5-3cm in June.  Dr. J switched from the Carbo to Cisplatin because he said he has seen better results.  So on September 15 I had the Gemzar 1000 and Cisplatin 25.  Of course I told them my white count and ANC were going to go down this week and I was right.  Today when I went to have chemo my ANC was 0.64 and the WBC was 1.92.  The nurses here keep telling me that the carbo is still in my system which is making my counts go down, but that doesn't make sense to me given they were up last week.  I seem to think this is related to the Gemzar.

Another issue that occurred last week is that my HBG was at 9.4 so they started me on Aranesp.  Today my HGB was 9.1.

My biggest concern is that the CA-125 only went down 1 point.  It was 77 on August 27 and last week it was 76.  When I was originally diagnosed in June it was 67 and then went up to 83 in July.  Should I be concerned about this number?

I did receive Neupogen today and will have it the next 2 days.  They will give me Neulesta if my counts ever go up between chemo treatments. 

Do you think I should continue on this regimen or should I switch to a different chemo.  Every time I've had the Gemzar my counts made it so that I couldn't have chemo the next week.  I think the Gemzar is causing the ANC and WBC to decrease and not the Cisplatin or Carbo.  The only time I was able to have 2 treatments in a row was when I only had carbo.
Dr. J said he will keep me on chemo until my CA-125 is in the teens or single digits and then I will have 2 rounds when my numbers get to that point.  At this point it could be next Summer given I'm not seeing any progress.

I do plan on going to Boise and having treatment November 19-the holidays.

I'm trying to have patience, but I don't know if I'm doing so great with that characteristic. 

Would love to know your thoughts.

Thursday, September 10, 2015

Visit With Dr. J

Tuesday I went to a new Oncologist here in Phoenix.  I've heard great things about him.  My friends Nicole and Michelle came along for support which I was so grateful for.  These girls are amazing, so kind and genuine. 

I thought it strange that the first thing Dr. J did was a pelvic exam.   Typically you do a get to know you and your history before the big plunge.  What was even more strange is after I got dressed we went in his office and he was dictating his note throughout my appointment.  He never even really took a history or asked how I was doing.  His nurse definitely made up for his interesting bedside manner.  She seems fantastic and I'm glad she will be the one who will be doing my chemo, which I start again on Tuesday. 

Dr. J wasn't very warm and fuzzy like my other oncologists have been, but it could be that he was having a bad day or he just doesn't know me.  In the end he did give me a hug like my other oncologists have, but it wasn't as genuine as Dr. Dans.

I do feel like Dr. J is going to help me though.  He feels like I really need to have a full dose of gemzar instead of halving it like we have been.  He also wants to switch from the carbo and put me back on cisplatin which I was on the first time I had chemo.  He thinks it works better than the carbo. 

He was kind of sarcastic/joking with me when he asked me questions and I didn't know the answer "since I am a PA."  He mentioned something about the fact that treating medical people is difficult.  I let him know that my knowledge is limited in Oncology and that I'm the patient and to not treat me any differently.  Yes it is nice to have the medical information that I do, but when it comes to me being the patient it doesn't make a lot of difference, especially because my specialty is Emergency Medicine.

I held it together rather well until Dr. J told me that I was going to have to have chemo for as long as it takes for my CA 125 to be in the teens or single digits.  It has a long way to go with it being 77.  Special prayers please that this chemo works, that my counts decrease and that I don't have to do chemo for too much longer. 

The Good New:  Dr. J felt the mass which he says is on the vaginal/anal wall and not on the anal sphincter has gone from what they were saying in Boston was measuring 2.5-3 cm to now 1.2-1.5 cm.  That to me makes me think we are seeing results, even if the CA 125 is lagging behind.

So there you have another chemo/cancer update.  Someday I hope that I am cancer free and I don't have to bore you or myself with these fun facts.

Wednesday, September 9, 2015

I'm Home...But Kind Of Out Of Commision

It is so nice to be home, to sleep in my bed, to have my kitchen with all of my fun accessories, to drive my own car and to wear something different than I have the past 3 months.

My suitcases are unpacked, the laundry is done, I've already made 2 stops to my favorite Sprouts Supermarket and I've sorted the gob's of mail.  I think I'm just about back to my life here in Phoenix.    

My Internet however is out of commission because the company  I had went under.  Since the new company thinks it will be 2-3 weeks until they can bring our complex service, I might myself be out of commission when it involves blogging.  However come next week I'll myself be out of commission as I start another round of chemo.  I do have my lovely library across the street where I type, however it's kinds of spotty here.

Last week during chemo my cousin brought his darling month old baby to visit.  It was fun to visit with them and to hold this cute munchkin.
My nurse in MVY made me the sweetest OVC blanket.  I've never seen fabric with OVC ribbons.  I love it!
Thursday we left for SLC.  I'm pretty sure that was the quickest 5 hour trip I've ever experienced because I slept the entire way.  When we got to SLC everyone went to a play while I tried to watch a Utah football game, but instead succumbed to a chemo coma.  The chemo coma lasted clear until Sunday morning.  I spent nearly all my time on the couch or in bed while everyone else had fun (pout, pout).

I was disappointed that I was unable to go shop at Swiss Days with mom and Tenielle, but it was probably a good thing that I didn't go because of all the germs swarming around crowds.  They did do a little Christmas Shopping for me though.

My dear friend Jenny came to visit me on Friday.  She sat on my bed and we talked.  I had to reassure her that I was listening to her, but that I couldn't keep my eyes open.  It really is so strange how chemo takes over me.  It is always good to visit with my oldest friend.  We discussed that we want to travel abroad in the Spring.  I plan on being healthy as a horse come next Spring.

Tuesday, September 1, 2015

Cousin's Visit MVY

I was suppose to have chemo on Thursday, but given the lab called while the PA was in my room with "a  critical" which was mine being my WBC was 1.4 and my Neutrophils were 0.5, I was not allowed to have chemo.  I admit I was actually kind of happy about it.  If I would have had chemo I would have had a completely different weekend.  Dr. P called me on Thursday night and told me to stop working, that I couldn't afford to be around sick people.  Tomorrow I will be seen in Boise and hopefully my counts will be high enough that I can have the second treatment of the third round. 

So instead of being miserable over this past weekend, I made every moment count.  Thursday afternoon I spent with my friend Melanie out at her pool chatting and having lunch which included her lime/cucumber/mint drink which is my favorite.

Thursday night Alisha and her husband came to MVY.  I took them immediately to half price sushi, which I actually haven't had since last summer.  It was yummy, especially the mango and avocado roll.  I also had to show them what Backdoor Donuts is all about, even though I'm not really a donut fan.
I've been wanting to go to Nantucket since last summer, but never have gotten there.  Tenielle and mom went when they were here, but I was working.  Some friends from church took us to Nantucket on Friday morning.  It was the most beautiful day for a boat ride.  While we shopped and toured the town, Jason fished with our friend Bruno.
Saturday morning my cousin Kyrie who lives in NYC and her boyfriend Justin flew to MVY to join us.  We did a little shopping in town and then headed for the beach.  It was a perfect beach day and I loved finding shells and swimming in the ocean.
I took them for lobster rolls at Off Shore Ale for dinner.  For some reason I've lost my taste for lobster; darn chemo.  Jason and Justin enjoyed their first lobster rolls.  While my cousins were visiting I introduced them to the best ice cream on the island.  We shared a cone twice!
Sunday I had to say goodbye to my church ladies.  I will miss this little branch and the few cute kids we have in it.
I did a little visiting with people in the ER and Melanie, packed things up and then took my visitors on a little tour of Aquinna Cliffs.  We hiked down to the beach, which I have never done.  The waves were huge and the views were gorgeous.
Yesterday before we headed to Boston I got up early to watch the sunrise.  It was a bit cloudy, but so peaceful.
We left at noon to go to Boston.  Of course I couldn't leave here without going to a Red Sox game.  They played the Yankee's which meant the stands were full.  It was so much fun.  There were 2 home runs by Boston and they won.
Today we did a little touring of Boston before we came to the airport.
I'm so ready to be home.  It's been a fantastic summer, but I'm ready to be home.  I'm flying to Boise to have hopefully have chemo tomorrow.  We will go to SLC for the weekend and then Monday mom and I are flying to Phoenix.  Home can't some soon enough.