Rest in peace Jared

Many of you know I follow a few other bloggers.  I've searched them out for several reasons but all of them are to help me keep perspective on my trials and tribulations as a sick single Mom.  One person I was following was a cancer patient named Jared.  He was in his 30s had a brain tumor, a wife, and 4 little little kids.  He was diagnosed 10/15/11.

A brain tumor is not good news and I don't know Jared or his family personally but I have followed their story since last year. This guy works in the financial field, lives in Lehi, and approached cancer much like I do...with significant desire to kick it's ass while living life.  He had had numerous brain surgeries and set backs.  He was in the hospital and then rehab through most of September but had gone home to recover.

I'm sorry to say, I've not checked his blog for about 2 weeks.  The wife is the one that blogs and she only blogs in spurts.  Much to my surprise, I learned today he died 10 days ago.  Looking back, I guess it wasn't a huge surprise and as a blog stalker, I really don't know the whole story of  his day to day trials but now I can see the writing was on the wall.

Boy his wife handled the whole thing like a pro.  She met with each child individually and explained what was going on a few days in advance.  Then she kept Jared's body home after he passed until the kids came home from school.  She told the kids he was dying so they could say goodbye.  She was so concerned about reducing the trauma to her kids as much as possible.  What a woman.

http://www.legacy.com/obituaries/saltlaketribune/obituary.aspx?n=jared-carl-olson&pid=167658049

I think of us battling cancer as warriors.  We are fighting each and every day for our lives.  Each cancer buddy I follow or get to know feels like a pending feeling of sadness knowing we don't always make it.  I always hold out hope until the bitter end.  Jared is the second this year for me.  I don't like it one bit.  But it is a reminder that cancer is a son of a bitch and doesn't care who it takes.  Fight with passion and conviction and know when it is time, to give in...because you really have absolutely no control.  I hope I can be as courageous as Jared and his family were.

Halloween party

So last night was the HUGE Halloween party.  This is a party that my friends plan a year in advance.  We aren't talking rookie parties.  This is the full blown P A R T Y.  This year, I finally pulled off the Statue of Liberty costume.  I found a funny green dress online at Target.  I got a torch and crown online too.  I made a sashy drape thing out of netting from the fabric store.  I think it worked out okay.  I also brought my cousin Ryan with me.  He came as a missionary which was a huge hit.

 

 

 

I admit, against my doctor's orders, I did enjoy some adult beverage.  Actually lots of adult beverage.  Unfortunately, I realized too late that not only was I drinking more than I probably should, I mixed my alcohol which always doesn't work for me the next day.  But boy I had a great time.  Jello shots flow freely.  One of them tasted just like a watermelon jolly rancher (yummy).  I also finally tried the "shotski" with an apple cider/Everclear thing.  It was delicious but one was absolutely enough.  I am not sure Everclear is meant for people over 40.

They use black plastic to black out their entire garage and put in black lights.  That is the party room where they have a bar and lots of dancing.  Cousin Ryan fit right in with the group.  They welcomed him in with open arms....literally.  He is now part of the group.  I hope he doesn't mind.

Words don't really express this party but there were lots of photos.  I thought I would share some with you to show the extent of the awesomeness of this group of friends.  There were probably 75-100 people at the party.  It was amazing.

Erik as Goldmember

Stacy as Foxy Cleopatra

 Mike and Kim (the hosts) as Orange is the new Black lesbians.  Mike has on fishnet nylons and black sparkly shorts under his dress.

Koli as Betty Boop.  She glued her real eyebrows down.  I am not sure how her eyebrows made out this morning.

My friend Kimberlee and her hubby Aki as Robin Thick and twerking Miley Cyrus. My cousin Ryan the Missionary too. She is the only woman I know that could pull off that skimpy outfit.

Goldmember and Foxy

These are my girls.  Left to Right, Koli, Stacy, Kimberlee, Kim, Christine, and me.

 

Orange is the New Black lesbians.  Clearly the men that marry into this family must be comfortable with their sexuality.

The hot couple - Lesley and Jason

Goldmember and Little Red Riding hood Grandma

Brook as Little Red and the wolf

The Tooth Fairy (Amy) twirling

More garage dancing

I have no idea who this guy is but I loved his costume.  We had to promise we wouldn't post it on Facebook.  He is the crazy cat lady.  Such a clever idea.

 

Now my Halloween is over for me which is fine by me.  I had a great time but now I can start getting ready for my trip to Nola's house next weekend.

Update from Dr. L

Today was my appointment with my Oncologist, Dr. L.  He was running over an hour behind so there was lots of time to people watch (more on that in a moment) but let's start with the most important stuff.....

He said he was pleasantly surprised to hear that my CT Scan showed no Lymphoma activity.  We talked a little about the lung cloud thing.  He said that could be from the pneumonia but will be something to keep an eye on with my Methotrexate use and Myositis which both can cause lung problems.  He also said my fatty liver was from the steroids and Methotrexate over time.  I let him know Dr. D, my Neurologist is watching the results too so I would follow up with her.

So next was to feel around my face.  He felt the lump I have is in a different location than last time I was there but I assured him it was one in the same.  He didn't feel it was growing fast.  Honestly, I disagree but choose to not fight it.  He recommended we see what it is going to do.  If it keeps growing, we will meet sooner but otherwise,  I follow up in January.  The plan at this point if it does grow is he would love a biopsy of it which means a surgical removal.  Since Dr. S, my ENT/Plastic Surgeon is so awesome, it seems actually easy to do that.  Then based on that will determine if we will do more radiation at this point.  He said based on the clear CT Scans lead him to feel we don't need to think about chemo for awhile.  He reminded me that my cancer is behaving unusual from normal Lymphomas and so we are still being cautious but he would prefer to see what it is going to do before we follow the treatment recommendations by the book.  I'm still okay with that approach.  He said if I become uncomfortable with it or find myself worrying more than not, we will be more aggressive.  Honestly, I can't see that happening.  As long as I know when I should be concerned and confident we can treat it effectively, I'm okay until it becomes visibly obvious.  He laughed and said he knows I will never let it get that big.  Haha

Now onto the people watching/observing.  There was an older couple that came in and thought they had an appointment but they didn't.  The office explained that Dr. L was running way behind but if they wanted to sit and wait, he would see them when he caught up.  I waited 2.5 hours from when I arrived to when I left and they were still sitting there waiting.  Sometimes I think about giving up my appointment so someone else can get in but I haven't had to do that yet.  I decided these guys didn't seem urgent.  Maybe just bored and had some questions.  I did offer once when a whole group of people had drove from Idaho for an appointment and had the wrong day.  I would have gladly given them my appointment but the office assured me they would fit them in.

There was one very upsetting situation though.  While I was waiting in the lobby, a woman in a wheelchair was brought out with her husband.  They sat in the chairs behind me.  He loudly announced that he guessed he will turn off all the utilities and start cleaning out the house this weekend.  Of course, my ears perked up.  She replied that she didn't think that needed to happen so suddenly.  Then  he said he can't go to Hospice with her and she needs to decide if she wants to die at home or die at someone else's home.  Yes...it was just like that.  My chin quivered and my eyes started tearing up.  How horrible to learn you need Hospice which means your treatments are over and your husband is so worried about himself, he can't even be sensitive to your emotions.  She was surprisingly calm and said she needed some time to think about it and explore her options.  Luckily her daughter (or what I assumed to be her daughter) came out.  I assume she was talking to the medical staff and whisked them off.  I was honestly relieved.  I'm not sure I could have heard any more of that conversation.  It was a great reminder that we MUST be sensitive to others and work our hardest to not just think of ourselves ALL the time.  I hope when my time comes for hospice, the discussion can go much more smooth than that.

So a good appointment with Dr. L.  I'm going to pretend I am not growing lumps in my face and continue to be blissfully ignorant.

On a side note,  HAPPY BIRTHDAY NOLA!!

Grandma's Birthday Celebration in St. George

I took a few days off work and went to St. George over last week.  Everyone was converging in St. George for various reasons so we decided to celebrate Grandma's 97th Birthday early.  Others came into town earlier but I woke up bright and early on Thursday and hit the road.  It sounds god awful but I like it.  When I leave, it is still dark.  The  roads aren't crowded.  The countryside is still dewy from the night and everything looks fresh.  I can make it to Fillmore for my standard "bio break" before the sun comes up.  I sat and watched it rise over the mountains as I checked into the office before I hit the road again.   While driving, I take advantage of modern technology of my satellite radio and iPod and listen to music.  Not any music but the music that makes me happy...makes me sing at the top of  my lungs...music that reminds me of different events of my life.  I sang almost the entire 4 hours and arrived in Toquerville promptly at 10:15 with a hoarse voice and a smile on my face.

Our plan was to head up to Oscars by Zions.  I promised Nola next time I went, I would dissect the chicken enchiladas to see if we could figure out how to copy them.  Everything I've had there has been excellent.  It is fresh and flavorful.  It took me awhile to dissect and determine the best description of what I see, smell and taste.  I'm anxious to give it a try.  I don't think I will make it quite as spicy but I suspect I can make a great copy with some intended adjustments.

 

The weather was beautiful in Springdale.  It wasn't very crowded.  I suspect because the government shutdown had just ended...and it was a Thursday morning.  We sat on the patio and I was in heaven.

 

After lunch, we went to Marsha's to visit a bit.  Marsha, Dan, Shirley, Stanley, and John were in town.  It was nice to catch up.  After some visiting, we headed into St. George to have dinner with Grandma.  Grandma was alert and so excited to see everyone.  She enjoyed her gifts.  We ended up eating in the private dining room at the center.  It was actually pretty nice and the food wasn't too bad.  We sang Happy Birthday.  Grandma even asked questions and enjoyed hearing each person's reports.  After our visit, we headed to Marsha's house again for a little visit before we all went our own ways.  Everyone was leaving early in the morning for their own locations.

 

 

I stayed in the Holiday Inn (Zion's North location).  I love this hotel and it is the best available close to everyone.  The beds are comfortable and they have a decent breakfast.  I enjoyed pancakes, sausage, fruit, and milk and juice.  Then I headed over to pick up John at Marsha's house.  One of my goals of going down there was to drive John home.  He brought his Subaru down to sell to Shirley and Stanley.

 

John has a reputation for being a leisurely driver so I was a little concerned that I might move us along too fast.  I did offer to stop as much as he wanted.  I really had no agenda for the day.  Much to  my surprise, I was the one asking for the first stop...and we didn't stop again until we were home.  I used my cruise control to make sure we stayed at speed limit.  There were lots of police out so I wanted to drive careful and not get a ticket.  John is a great storyteller and I always enjoy talking with him.  We chatted the entire 4 hours home.  We laughed and had a great time the entire drive.  I would happily drive John any time.  Not sure he would like my quick trips but it is a great way to make a trip with limited time.  I dropped him off at the U of U in time to have lunch with Mars.

 

It was great to be home Friday afternoon and still have the weekend before me.  It was also fabulous because I forgot my work Blackberry so I could not check in with work.  It was great to see everyone too.

Chalk....anyone? anyone? Just kidding

I had to make that the title because I told my Mom I was going too.  I went to have a CT Scan of my torso today.  They warned me I had to use contrast.  I assumed it would be the milky chalk stuff.  I was happy but still  not thrilled when they brought me out the "Crystal Light" drink.  I seriously do think they put lemon Crystal Light in there.  I had about 30 minutes to drink it and then had to wait about 45 minutes before the scan.  All this on an empty stomach.

So I sat in the waiting room trying to choke it down.  The lady told me to drink it slower to avoid getting nauseated.  But you have to clip along with the drinking so I tried to do both.  Thank goodness for social media.  I posted on Facebook and almost instantly, my Myositis friend Shawna, who was a nurse, posted to use a straw so you don't taste it so much.  That worked like a charm!  Who said social media isn't a good thing??  Thank you Shawna.

Once I went back, they told me I would be getting an IV too!  That was news to me.  It is the same contrast IV I had in March.  You know the one that makes my butt hole get very warm all day?  Yeah....again.  Well really the rush of warmth is all over but it stays in the butt longer.  It is a very weird sensation. 

So since they were doing my chest, abdomen, and pelvis, I had to put my arms over my head but keep my left arm  straight as possible for the contrast IV.  They said if my arm is bent, the machine will automatically shut off!  No thanks.  So I did my best to lay there about 20 minutes while I slid in and out and in and out and breath and don't breath and breath and don't breath...over and over.  Not too troublesome...not my favorite thing to do either.  But it is a necessary evil.

I came home to work but I have to drink tons of water as the contrast is difficult on your kidneys.  I also started eating.  My trick is to eat bread type products as I feel it gives the contrast something to "grip" on it's way out.  I was surprisingly tired today and still feel pretty icky but I am doing okay and glad it all is over for now.

Because I am a nosey sucker, I did go out to the IHC website and read my results.  From what I can see, it doesn't appear I have any new lymphomas.  I have one lymph node present that is larger but it hasn't grown since 2009.  My lungs were cloudy - that was not present in 2009 and it appears I  might have a start of a fatty liver.  Of course, I am not a medical professional so I will just use this information as just that....information.  I see my Oncologist Dr. L next Thursday.  He will tell me the real story.

Obviously we didn't do my face again which is where my current tumor is. They try to keep radiation load controlled as possible.  He felt we can find the face tumors easily.  The eyebrow tumor feels larger to me but still not able to be seen normally as I walk around.  We will see what he says about that.  I'm not even going to type out the options we last talked about as those were awhile ago and things could have changed. 

Where have you been???

I hate to start a post or conversation with an apology.....BUT....I am sorry I've been absent.  What is my excuse?  I guess life happens....or nothing exciting does happen.  Haha

Since my last post, I've been back in the regular swing.  I'm still sick and really really tired of it.  I'm still pushing Philip to do his homework.  I'm still working steady.  And that seem like it is all.

I went back to my GP, Dr. T this week just to make sure I've not missed something since I am not better.  My cough is a very annoying hack.  I get in these coughing fits that just won't stop.  He wanted me to keep taking my antibiotic (8 weeks and counting) and gave me a refill on my narcotic cough syrup.  The problem with antibiotics for 8 weeks is I have no bacteria (good or bad) in my body.  So I have headaches, nausea, and....ummm...digestive issues.  So I am taking a probiotic he gave me on my last visit.  I just ordered more off the internet.  I did take them for a week straight when he gave them to me and I felt much better.  I'm hoping to feel better bacteria wise very soon.  My lungs are still "cloudy" but he said that is normal after pneumonia.  I think if I keep going at this rate, my next visit will be with a Pulmonologist. 

Mom came up for a visit last weekend.  We had John over for dinner and had a great time chowing on white chicken chili and visiting.  John is the best story teller.  Mom and I had a great visit too.  She went to Mars art class on Sunday and made some beautiful watercolors.

Philip is super busy in school....which we knew he would be with 3 AP classes and 2 Honors classes.  He is still struggling to keep up with the homework but is really trying to break his bad habits.  He is getting ready to take his first ACT test in December and will start a prep class later this month.  Hopefully it will help him score high.  He also got a letter this week from SUU inviting him to apply to the summer program they have.  They only accept 50 students and it is based on grades and ACT score.  If you are accepted and attend, you are provided a full ride scholarship for 4 years  Unfortunately, SUU does not have the program he is interested in.  But maybe other schools are taking note of Philip's efforts.

Work is work.  Enough said there.

This weekend I am planning to rest up more and enjoy take my cough syrup in hopes to get better.  I do have a baby shower tonight for a lady in my book club.  I ended up organizing our group's gift.  We were able to pool our money and get her a stroller/car seat she registered for.  It was $300.  I was reminded how much more things cost than when Philip was a baby.  But other than the shower, I'm on the couch or in bed.  I really want to kick this thing.

I hope everyone else is doing good and have a great weekend!