Philip's trip to North Carolina

As promised, I wanted to write about Philip's North Carolina trip but frankly...he is a teenager....a teenager that isn't real interested in telling stories.  So I will share what I know and provide photos that have been shared with me.  My sister would say "It's not your story to tell" which I realize but it is just too fabulous to skip telling all together.

This is the 3rd year in a row that Philip was accepted to the Engineering camp at NC State.  For those that don't know, NC State has one of the top Engineering programs in the nation...especially for a public school.  This is not an easy program to get into.  This year, we had to send in his transcript and a letter of interest written by Philip that outlines why he wants to attend, what he plans to get out of it, and what he will contribute to the program.  The application window opens in January.  We strive to get everything in by February.  Then we wait.  We always get it in time to get "early" decisions which means in April, we find out if he got in.  They have students come from all over the country but most are in the Raleigh area.  This year he said one of the students was from California!  We were so pleased to learn Philip was accepted to his top class choice which is ECE or Electrical and Computer Engineering. 

In this class, he built an RC car but they adapted it so it ran without human intervention.  Philip had to build a circuit board and write a computer program for it to follow.  Luckily, he worked with circuit boards in 8th grade so we wasn't green on that part.  I understand his car did well.  It didn't break any records or come in first but it ran and did what it should.

 

 

Part of the fun of the camp is he stays in the dorm.  It is regular college dorm with 2 people to a room.  You don't get to pick a roommate but Philip liked his roommate this year.  He said he was a "cool soccer dude".  Philip was thrilled to learn his resident counselor was one of his friends from his video games so they knew each other and have been playing together all year.  Philip said one of his favorite things is his counselor would take him out for late night calzone runs.  I guess that is part of college life.  Philip also ate in the resident dining halls for breakfast and dinner.  For lunch, they brought stuff to his classroom.  To get around campus, they had to take the campus bus every day.   It is a great snapshot of what living on a college campus is all about.

Sorry I don't know how to rotate these in the blog yet.
 

Philip came home more clear on his career goals and what he had to do academically to meet his college goals.  He has got lots of work to do to catch up.

 

Philip went out a few days early to get used to Carolina and to spend some time with Nola and Gregg.  I know Nola took him to a movie and they ate at Bojangles.  Bojangles is a fast food restaurant that sells biscuits in the South.  Philip said they also have great Sweet Tea.  He fell in love with Sweet tea this trip.  (Be sure you say it with a Southern drawl).

 

They also went to the Farmer's Market.  I haven't been to the Farmer's Market in Raleigh but I did go in Greensboro.  Those are some serious Farmers out there and because the climate is so mild, they have great stuff in what feels like early season to me.  I hear they got some berries and tomatoes.  They made berry shortcake and BLTs.  Yummy!

 

 

After his final presentation at NC State on Friday, Philip came back to Nola's and crashed.  I understand he didn't sleep more than 4-5 hours a night while at camp.  So much for discipline...right?  But Gregg had a very fun project for them to do together.  They are making a metal guitar wall hanging.  Philip said he spent lots of time figuring out the shape he wanted and they got started.  They didn't get finished yet but plan on getting together later this year to finish it up.

 

Nola and Gregg took Philip out for wonderful Southern BBQ at "The Pit" on his last night.  Philip says "I love my Southern BBQ". 

Philip had a great time and learned lots.  I so appreciate Gregg and Nola helping him with transportation and set up at the program as well as spending 2 weekends making Philip's dreams come true (Philip's words).  It is certainly a positive experience for Philip and if he comes home motivated to learn, I think it is money and time well spent!



And I'm done...

This afternoon was my second and last radiation treatment.  It was a no dilly dally type of appointment.  I barely sat in the waiting room and they came to get me.  Once again, I seemed to bump ahead of the 2 people already waiting.  I suspect it is because my zap is quick. 

Knowing what to expect made it much easier.  It is still tough to lay there and try not to move a muscle.  I hope I did okay.  It went without pause and I was back out of there in less than 10 minutes.  I'm going to miss those two ladies in the radiation room.  They are so nice and professional.  I did ask the one about the light show I experienced Friday.  She said that is normal anytime they do radiation to the head.  It is actually nerves lighting up.  And that might explain why my eye feels "funny" after.  Maybe it is a nerve thing...and I know lots about nerve things.  She said it is harmless and doesn't indicate there is any damage to my eye.  I also asked for less blockage of my nostrils if possible.  They were happy to oblige.

I see Dr. C again in 3 weeks.  I checked the puzzle but going in and coming out, someone was sitting at it so I didn't take a photo.  It had a little more done but not too far.  I suppose people aren't there for hours working on it...and it seems many people are able to resist the draw to it.

I also saw Dr. L today (my regular oncologist).  As you probably recall, my appointment today was to talk about my options and figure out the best treatment plan...but I once again moved ahead without Dr. L.  He had already been given my notes and knew what our plan was and where I was with it.  I love when doctors talk to each other.  He felt my eyebrow and was very happy because he agreed with me, it seems to have shrunk already.  He said he felt very encouraged.  I agree.  He wants to see me again in 2 months to follow up unless I have any problems at all.  He reminded me to keep checking for lumps and generally not feeling well in the meantime.  He said I will know when that happens.  He said the main concern is the cancer is somewhere else we haven't found yet.  I confirmed I knew that and will be sure to let him know as soon as I catch anything going on we won't like.  He also said we will probably do another PET scan in September.

Today my eye was pretty puffy when I woke up.  But luckily it seems to get better through the day.  It wasn't sore at all yesterday or today but after the radiation, it is funky again.  I'm going to go out this evening and get some eye drops.  They said all this is normal and to be expected.

I really hope this does the trick.  If not, we will do more.   I got to bring my mask home to keep safe.  They will use it again if necessary.

Hope you are having a good Monday.

One down, one to go

As you might recall, I was scheduled to do 2 radiation treatments starting yesterday, Thursday.  I went in Thursday for my first treatment and got my eye numbed and gooped up.  I laid down and they put the lead eye protection in.  Almost instantly, it started burning.  I waited a second (felt like 5 minutes) and decided to speak up.  It wasn't getting better.  It felt like lemon juice in my eye.  So we decided to take it out.  I told them I could handle it if we put it in right before we started but when they took it out, I guess my eye was pretty red and irritated. They said I was probably sensitive or allergic to the metal.  Dr. C came in and said he wasn't comfortable using the eye cup and it was really extra precaution.  So we proceeded to set up when he noticed the form they made of my radiation field was not exactly right.  So he wanted it re cut which meant we had to postpone my treatment a day.  It was a little disappointing but I was glad to leave. We rescheduled for Friday and Monday.

Today, Friday, I went in to get my first treatment.  It was much more crowded with people waiting for radiation.  But I bumped in front of most the people and went on in.  Today was all business.  I got positioned and bolted in.  They transferred the template marks to my face, lined up the machine and left the room.  They told me they watch on cameras and could hear me if I needed something but it was critical I didn't move.  They did put a "plastic" gel sheet over my eye.  It makes the electron radiation not go so deep.  They told me if it slipped, to let it fall because it was critical I didn't move.  I took a deep breath and waited.  They had told me it would make a bumping sound but they didn't tell me about the flashing lights.  It seemed to move all over in a very random pattern.  It reminded me of those electrical balls you see in the science museum....or Young Frankenstein.

What it looked like to my closed eye



What I imagined

The radiation took about a minute but the whole thing was about 10 minutes including the 1 minute zap.  Dr. C met with me after just to make sure I knew what to expect.  He will not be in the office on Monday.  I will have a follow up with him in 3 weeks.  He said about all to watch for is the lump growing.  In that case, I need to call and come in soon.  He did say it could swell and not to worry but if it is bigger after a week....call.

 

It feels...strange.  Not burned...not sore....not irritated...but strange.  I believe Larry the lump suddenly got the rude awakening today that I'm not going to put up with his antics another day and his days are numbered.  When I touch it and press slightly, I can certainly feel it.   It feels weird to move my eyebrow.  It looks like it has become more pronounced over the last week but still not huge.  In fact, you probably wouldn't notice it if you saw me walking down the street but when I pinch it, you sure can.  In fact, let me properly introduce you to Larry the Lump before he hopefully hastily departs.

 

Gross I know...

One thing I like about the office (besides everyone being incredibly nice) is they have a puzzle in the radiation waiting area.  Last week was one puzzle but this week is a new one.  It is of boats by a green mountain.  I am sure it is Alaska...well not sure but that is what I choose to believe.  Some of you might know I have pretty strong compulsion about puzzles.  I found myself waking up early this morning thinking about the puzzle.  I sure hoped it wasn't done today because I wanted to see what had happened and how far it had come along.  Luckily it was far from done but someone had worked on it since yesterday.    I got there early enough to put some pieces together and feel like I made a contribution today.  Here is the puzzle today.  I honestly can't wait to see it Monday afternoon.

 

 

 

I thought you would be curious like me so...here is a photo of my mask that I get bolted into and the blasted eye cup.

 

The blue plastic is what gets bolted to the table.  The cut out and taped hole is were the radiation goes.  The plastic gel sheet stuff goes over the top and then the form is in the radiation machine above me that lines up perfect with the marks they make on my face.  Notice the nose holes are not cut out...by the way...but I can breath okay.  They are lucky I don't have my Prednisone triple chin.  They would have needed a whole new sheet of plastic just for that.

The eye cup.  It is in it's sterile bag but it is kind of a 1/2 circled dome and stacked with the stem sticking out so they can get it off my eye.  I don't like this piece of equipment at all.  I'm glad I don't have to use it.

 

Philip finished his NC State program today.  Nola and Gregg picked him up and he is back at their house.  He had so much fun, it deserves it's own posting so I will write again soon after he gets home.

 

I'm doing good and looking forward to the weekend.  I am getting my hair done (no eyebrow work this time...for obvious reasons) and going to a big Bachelorette party on Saturday.  I get my Philip back Sunday afternoon.

 

I hope you all have a great weekend.







Zip Zap Zoom

This is the week to learn what is next.  Yesterday, I had a CT Scan of my "orbits" and head.  It went fine although I had that IV contrast that I really don't like.  They put in an IV and hook it all up and then do the CT Scan without contrast.  Then they push a button and in goes the contrast.  You wait 4.5 minutes for it to go through your body and then you get the next CT Scan with contrast.

When the contrast is injected, you get an overwhelming feeling of flushed heat.  He warned me that it will feel like I peed my pants but he assured me I did not (I knew that too).  I'm not a rookie at this but it has been awhile.  This time they asked lots of questions and wanted to really research my medical history.  I know there is a small chance to have a reaction to the contrast.  I think they want to be sure they can try to forecast that.  I've never had a problem so there is no reason to think I would this time...and I didn't.

After it is all done, I have to drink lots and lots of water to flush out the contrast through the day and make sure it doesn't "rest" in my kidneys.  I always feel a little funny when it is done but after a few hours it is so much better.  The biggest issue is my bum stayed "hot" for a good hunk of the day.  Weird.

Today I saw the radiation oncologist, Dr. C.  Well I actually saw several "nurses" and 2 doctors but Dr. C is the coordinator.  Dr. L talked to him again today before my appointment.  It is nice to know that a doctor that is so incredibly busy is thinking of me and making sure my care is coordinated.  Going in, they were pretty sure they would do the "standard" treatment which was 5 days a week for 3-4 weeks.  But after meeting and talking...and looking at Larry the Lump, he suggested we try an alternative.  I was all ears.

So he recommended to try a short blast which is 2 blasts a day apart.  He says my type of Lymphoma seems to respond well to that and it takes care of it in 80% of the time.  If it doesn't work, we will do more.  The good news with this route is that I would avoid some of the side effects we discussed with the standard treatment.  The biggest side effect with the standard treatments were dry eye because they would damage a tear duct and they said most  people get cataracts within 5 years of radiation.  He also said I would lose my eyebrow and my skin would become sensitive.  With the short blast, those side effects are almost non existent.  The other thing I didn't know is they can only radiate the same spot once or twice but with this short blast, they could do more if necessary.  There is no negative considerations to this decision.  The biggest issue is if I am the 20% that doesn't work and then we will just do what we planned in the first place.  He said he usually only offers this choice to people that are comfortable (ie - not freaking out) with recurrent cancer....like me.

I liked the idea of the 2 treatments and let's see.  So I signed up.  Quickly I was taken away to get measured for a "mask".  This is one of the more unusual things I have gone through.  They have this piece of perforated plastic that they heat up with warm water and then come put it over my carefully placed face and head and bolt it on the table.  I have to sit there for about 10 minutes while it cools and hardens into hard plastic.  They also had about 5 doctors and nurses going over my eyebrow and marking my skin with marker to figure out the positioning and marking it for the radiation.  They said they would skip the tattoo on me which was nice.  Because it is so close to my eye, they have to be super exact.  It was a fascinating process.

The big concern was my vision.  They said with what they have planned, there is less than 1% chance I would damage my vision.  He said it just never happens but he couldn't guarantee it.  But just to be safe, they are going to put a lead cover over my eye for the zapping.  He drew me a picture and it looks like it might be similar to a Sorry game piece.  They will put it right on my eye and close my eyelids over it (although they won't close all the way over it because of the "stem").  They said they will numb my eye (thank god) and they said it was a little awkward but fairly easy.  I feel pretty good about it all....except the eye cover but I will be a big girl about it.

I signed up to do my two treatments next week on Thursday and Friday.  I will follow up with Dr. C a month later to see how it is going.  He said it could take 3 or so months for the lump to go away.  This all means I don't need to take leave from work but am going to take Thursday and Friday off.

I liked the Radiology team.  They are very friendly and personable.  I think Dr. L did a great job hooking me up with Dr. C.  He was a nice guy.  He was fascinated I worked with UC in Utah.  He asked why I am not living on the beach in Southern California.  I wonder that myself.

I knew you would be curious as well.  Here is a picture I took of the radiation machine.

 

Tomorrow, Philip leaves for NC State for his summer program.  I guess it is a Mom thing but I always get nervous with him flying across the country alone.  He is comfortable with Atlanta though so it should go okay.  Nola is at the ready on the other side ready to pick him up and spend some time with him and get him set up on Sunday at the University.  He will stay in the dorms all week ending on Friday with his final project.  He is going to the Electrical Engineering/Robotics session so they will build an RC Car that runs without human intervention.  I think Philip is going to like it.

 

That is it for this week.  I'll give an update next week after my treatments.



The waiting game....

So I am adjusting to the idea of radiation.  I was hoping to get the CT Scan this week but they can't get me in until next Wednesday.  On Thursday (the next day), I meet with the Radiation Oncologist to discuss the process and things to be aware of.  I can't see Dr. L (my oncologist) until 6/24 as he will be on vacation. Seems like a long time but it is only 11 days later.

I Googled radiation and promptly scared myself to death.  I really need to follow my own advice to not Google medical stuff but alas, where else do you learn and find out what you should consider?  I really don't know much as Dr L just gave me a high level overview of radiation.  It sounds like he was thinking my zapping would be "light" as the lump is just under my skin.  It was good to learn more what to think and ask.  I'll spare you the details of what I found so you aren't scared too.  We will wait to share until I know more.  But I am starting a list for my appointment next Thursday.

I also Googled "eyebrow replacement" options as they said I will probably lose part of my eyebrow permanently.  I was amazed what is out there.  You can have a hair transplant, tattoo, glue on brow hairs, and even temporary eyebrow tattoos.  The temporary eyebrow tattoos reminded me of the tattoos Philip used to love where they are stuck on paper and you blot it with water until it slips off the paper.  To eliminate the "shine", you can powder it.  I can't help but feel like it would feel like having scotch tape on my brow line.  I think the right thing to do is to go to a "hair" place and talk about what can be done.  There are classes for makeup tips to "minimize the side effects" of cancer treatment.  Honestly I can't see myself fussing too much about it since my eyebrows are light and I am often in the house but I know I don't want to be brow-less all the time so I'll figure something out.  I had no idea there are so many choices though.

I still feel pretty good but am still having some fatigue, more night sweats (but not drenching sweats...still), and pain in my underarms.  Don't worry, the pain isn't heavy duty, just like I used crutches for a bit.  This week I've been taking a little late afternoon nap after I am done with work before we get dinner.  My lump continues to grow and is itchy and hurts to touch some spots.  I look forward to zapping it.

Philip is finally done with school.  He worked so hard and got As in most his classes but he got stuck on Chemistry with a bad grade.  It snuck up out of no where.  It is so easy to let the disappointment over that grade override all the good work he did.  It is incredibly disappointing as his aggressive education track doesn't tolerate that kind of grade.  But he is going to pick up the pieces and move on making a plan to do better next year.  He did end with a respectful 3.4 unweighted, 3.8 weighted.  He has this summer to figure it out.  Next step is in July when we find out how he did on his 2 AP tests.  I know one thing for sure...the 5:20 alarm is a thing of the past.  I will never urge him to take an early morning class again.

So that is all I know for now.  One more week of blissful ignorance....or the waiting game.  I continue to stay pretty busy and trying to get all my ducks in a row.  I am guessing we won't start treatment until after the 4th of July but what do I know.  But that is what I am thinking and planning.

Hope you are having a good week.