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.

And things ramp up....

Well howdy.  It has been a very busy week for me.  We had such a fabulous time in Moab over the long weekend.  We got home and got back into work but I also had a business trip to Oakland.  It was a quick trip really and mostly designed for me to meet my new daily contact at my client's office.  As normal, it turns out we ran out of time so I didn't really get to share my wonderful parts of the presentation as they were cut out (honestly fine by me!).  The real trick was traveling after camping was probably not the best idea.  I was exhausted!  On top of that, my house cleaner, Trudy was cleaning so I had to clean up the camping mess before I left town.  But alas, it all went well and I made it through successfully and without incident. There is nothing like coming home to a clean house!

As I think I mentioned, I had been feeling like the lump in my eyebrow has been growing.  I woke up in Oakland Thursday, with a swollen eye.  I admit I was a little panicked about how I was going to go to my client visit with a massive swollen eye.  Luckily I had some time to put ice on it.  I also wore full makeup and practiced sitting with my right eyebrow raised.  No one mentioned it so I think I was successful.  Well okay, when I talked to my boss today, he said he didn't notice so I was successful.  But I did call Dr. L's office today to get an appointment to have him look at it.

Unfortunately, they couldn't get me in until July but with some friendly pushing and them asking Dr. L how soon he wanted to see me, I had an appointment this afternoon.  He did feel it was time to do something about the lump.  He gave me 3 choices.

1)      Chemo and radiation – is the most thorough but could be overkill and has many side effects.  Will fix the eye and any other tumors elsewhere (which he doesn’t feel confident there are any at this time).  Would be 2.5 months of chemo and then a month of daily radiation.

2)      Radiation alone – will take care of the lump in my eyebrow but would not treat any other tumors that may be growing elsewhere.  Will most likely lose part of right eyebrow as the hair will not grow back.  Would be a month of daily radiation.

3)      Biotherapy chemo – will be the least invasive and less side effects but probably won’t eliminate the tumor.  Didn't talk about duration as this doesn't seem like the right option.

As much as radiation terrifies me, I am going to explore option 2 first.  If it doesn’t work, we will do the full chemo.  I need to have a head CT scan to check my “orbits” and then I will meet with the radiology guy to talk about it further.  I want to be fairly confident I won’t lose my vision.  My Oncologist did talk to the radiation guy (he was in the office while I was there) and he thought he could do it without impacting my vision but he will need to see me and the CT Scan before we will know.  I am feeling pretty okay about it all and I am thrilled I have options although all of them suck and I would rather it just went away.  Since that is not going to happen, I'm going to buck up and get ready to FIGHT!  I've actually been getting ready since 3/7 but now we have the wheels getting ready to move.

 

I will know Monday when my appointments will be.  He does want me to move pretty quickly.  After those 2 appointments, I will meet up with Dr. L again to let him know what I decided and make our plan to proceed.

 

So this weekend is hopefully a quiet weekend for me.  I need to stop and catch  my breath for a minute.  Well more like let my body rest and get some energy back.  I have a nice huge book club book I need to finish this week so that will keep me entertained while I rest.  I have some serious kitty corralling to do as well.  They get pretty sad when I leave town.  Right now, I am forbidden to go anywhere without a ball of fluff close by.  Hopefully they will get over that soon.  And if I am up for it, I might putter in the yard.  I need to get some weeds pulled and trim back the tulips so the next round of flowers can shine.  Sounds like a fantastic weekend plan to me.

 

I hope everyone enjoys the weekend.  It is the first weekend of June you know.  Summer is showing lots of promise!!

 

Memorial in Moab

Hi my peoples.  Today I am posting from hot and roasty Moab.  In July last year, we joined in with a group of my friends and put down a reservation for this weekend.  We are in an RV park with cabins.  Philip and I have a cute "small" cabin.  It has a queen bed, bunk beds, fridge, stove, and air conditioning...thank god.  We were suppose to have a cabin by the potty but alas we did not get that cabin.  We have a cabin that faces west.  And the shade tree just got planted....but we are making the best of it.  There are about 35 people in the group.  Several I work with.  A few I met through book club, and a few I've just met at various gatherings.  This is one of the most friendly and welcoming groups of people I've met.  We signed up to participate in the group meals so we make 1 meal over the weekend with another family and someone else makes the rest the meals...well except lunch.  We are on our own for lunch.   We are doing dinner tomorrow (Sunday).  This morning, after enjoying group breakfast, we made a lunch and got ready and went to Arches.

The view from our cabin.  There is a little tree (stick) next to that red rock.

Philip playing a little morning guitar on our porch.  He is so good.

 

 I've been to Arches before but I'll tell you, it was like all new to me again.  The only one I really remembered was Delicate Arch.  Since I am no longer able to hike, I had looked up different things to see and do for disabled people.  We mostly just drove around snapping pictures all over.  We did do the walk to the look out at Delicate Arch.  I remember walking to the arch when I was younger.  It is bitter sweet to visit again.  The park is pretty crowded this weekend.  We were glad we got an early start to avoid the heat of the day and probably bigger crowds.  But there were people everywhere.  Some places, there was absolutely no where to park if you wanted to hike a little.  There were also several tour buses full of foreign tourists.  We ran into an Asian group.  There was also a French bus.  I got to hear a big group of women talking French while I was waiting at an outhouse.  I hope they brought dollars because we don't like Euro here (little humor regarding the money issue we had at the French island of Guadeloupe).  We found a nice scenic pull out to enjoy our sandwiches.  It was great fun.

 

Delicate Arch

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

After Arches, we decided to go ahead and go down Potash Road to see the petroglyphs.  I had read about them in my disability internet search.  It is a lovely uncrowded road.  It follows along the Colorado River.  After about 5 miles, there is a pull over where you can easily see the petroglyphs.  We were very glad I printed off some literature about them so we knew were to look.  There were also lots of people rock climbing.  There was a turn off to see dinosaur footprints but when we got there, we couldn't really figure it out and from what my research said, they are way off in the distance and tricky to find so we decided to skip it.  We really enjoyed that side drive and it was way cool to see the petroglyphs.

 

They call this "Wall Street".  It is the sheer cliffs along Potash Road.

The Colorado River

 

Petroglyphs.  The internet says these are from 500 AD.

Tomorrow I think we will go to Canyonlands.  It wasn't huge on our list but it would be fun to do while we are here and a nice way to spend a few hours.

Mobility wise, I'm making a good effort to get around and do stuff.  The camp ground is mostly loose gravel and there are lots of things you have to step up for.  Our cabin has a good size step as well but so far so good.

We are enjoying our run away and I am so thankful I have met such great people that include me in their fun plans.

Just a status update...

Well Hello.....

I just had to report that the Bottles of Hope were delivered to Dr. L's office today!  I completed 73 bottles which is a ton!  I put the cute tags on them and everything.  I had hoped to catch Rachelle but she was working in the Tooele office today.  I handed them over to the receptionist.  She was very pleased and remembered the prior bottles Philip delivered.  I told her I was okay if she picked one out herself.  It was so nice to see them appreciated.  It is a pleasant surprise and a nice response for all the hard work.  I honestly hope they don't ask for more for awhile.  The manual labor is a tedious process.  I'm not sure I am ready to make more any time soon.

They have a "break room" area for patients to get snacks, information, and freebies.  They put our bottles in that room for patients to take if they want.  I really hope the patients enjoy them and it helps them remain hopeful through their cancer journey.

Our second load - 73 bottles

The tag we figured out.  I am really happy with the poem.

The finished product that the patient can take.

 

As you know, Mother's Day was last Sunday.  My dear sweet Mom and Chuck came up to Salt Lake for a work conference and to celebrate Mother's Day and Mom's birthday.  We celebrated her birthday early at Benihana.  On Saturday, Mom and Chuck worked like crazy doing yard work in my back yard.  They hit it hard and fast and whipped it into shape.  I feel like I was the one being celebrated.  I appreciate their help so much!   I have just too hard of time laying around watching people work.  So I spent the time cleaning my patio and planting my flower box by my back door.  I stopped at Costco and got some of their beautiful baskets of flowers for my planter boxes.  They have such nice plants for a decent price.  It was fun to get flowers in the yard and clean up a little.  On Sunday, we went to Little America for their big fancy brunch.  Mom and Chuck got in line at a great time and were way up front so we were quickly seated once they opened.  As always, they put on a great spread we all enjoyed and ate until we just couldn't fit one more thing in. 

 

Mom and me on Mother's Day!  Well at least the best I can do. 

I forgot to pull out my camera and get a photo and I am very sad about that.  :-(

 

Another big thing going on is I got really tired of bottoming out my car on my driveway.  And the ledge of my sidewalk got so big that I really struggle to walk over it which was creating some significant limitations for me.  So I called the city and went to business figuring out how to replace it.  The city has a 50/50 plan where you pay 1/2 and they pay 1/2.  Much to my surprise, they came out within a week of writing the check.  They were not only replacing the lifted sidewalk but the entire approach, curb and gutter, most the sidewalk in front of  my house, and a section of asphalt!  It ended up being a huge job.  They came and tore out the stuff last Thursday which was very fun to watch.  But unfortunately, they got behind and couldn't pour concrete until Monday.  The bad news is I can no longer walk on grass and really didn't have an easy way to get to my car on the street with everything torn out.  But creative ideas teamed with strong desire and determination made it possible.  I was very happy Philip was here to help me over the weekend.  The workers were here bright on Monday to pour the new concrete.  Tuesday I could walk on it which was a great help.  I'm still waiting for the asphalt to be repaired.  That is suppose to happen Thursday.  If that is the case, I can pull back in the driveway by Sunday.   I do have to say that these guys (city employees) have been so nice and courteous.  They have an eye for detail and make sure everything is perfect...down to sweeping the concrete pieces off my grass!  They are much more conscientious than some private subcontractors I've hired in the past.  It has been a pleasant surprise.

 

Amazing process.  A huge hunk of sidewalk removed in one big piece.

 

 

I realized how spoiled I am to park in the garage.  My car is filthy after parking on the street.  It gets overwhelmingly hot inside.  Plus it is tough for me to get to the car on the street...even with my creative ideas.   And groceries....not happening until I can park closer.  Once I get access to the garage again, I'm going to go have my car cleaned and pampered so it knows I love it and apologize for the abuse.

 

Cancer wise, I am sorry to report it seems the lump in my eyebrow is growing.  It isn't too visible yet but it does upset me and lets me know that my denial plan isn't a successful treatment option.  haha  Since I just saw Dr. L last week, I'm going to not worry about it for a few weeks (unless it becomes visible).  I would like to get Philip finished with his Sophomore year of school and I want to go to Moab before I have to "go down".  I'm keeping my eyes open for a last minute cruise for a hot deal.  We were looking at Alaska for a "quickie" but haven't found anything that works that fits our strict criteria.  I might have to put a cruise on the "after" plan. 

 

I hope everyone is having a good week.  XOXO

 

And the doctor says????

Remember when Richard Dawson was the host of Family Feud?  He would always be so animated about the way he said "And the survey says?"  Like we were all waiting on pins and needles to hear the answer to some minute question.  Anyway......

My visit with Dr. L was as I sort of expected.  Labs are good.  He confirmed the PET scan was clean and did indeed go up to my brain.  He also felt around and didn't feel anything he was concerned about.  I did point out the lumpy eyebrow.  He wasn't terribly concerned about the "slug" part of the eyebrow but there are two "beads" that concern both of us.  They have been there since the surgery.  Dr. S was not concerned and said it was all swelling from the surgery.  Dr. L shrugged as if to say "I hope so."  He did confirm that the PET scan didn't pick anything up in my eyebrow so that was good news.

We talked about options.  Starting chemo is still an option but he really didn't feel it was time yet.  He said the standard procedure would be 4 rounds of RCHOP followed up by radiation of my eyebrow.  WHAT??  We never used the radiation word before!!!  I guess it goes without saying but the big concern that weighed on my mind all night is when he said they hesitate to do the radiation because of the location.  There is a chance of vision loss/blindness.  WHAT???  We never talked about that before.  Now I am not saying that is our course of action but more of a "what if" scenario.  It kind of scared me and made the decision to not treat right now a little less sweet.  He did say he consulted with 2 other Oncologists and they agree it isn't clear to treat right now and they aren't sure radiation would be appropriate due to the location.  As Dr. L says, "Yeah if it was on your arm, we would be signing you up...but in your face, we are more careful." 

We talked about other treatment options such as IVIg which he said is only used when a person's immune system is knocked out.  He said it wouldn't be a benefit for me at this time.  We talked about any other types of chemo that wasn't so harsh but he said the protocols are for RCHOP and to remember the goal is survival over the cancer.

So we continue with "Watch and Wait".  I have an appointment in August for my next follow up...of course unless I feel something suspicious or feel crappy, then I am in sooner.  In August, we will probably do another PET Scan.  He didn't want to do one earlier due to the radiation load.  We also talked Bone Marrow Biopsy.  He wants to see what is going on in August and assures me they use anesthesia now so it is a breeze.  So a free pass for most the summer.

And I am left to process.  I won't lie.  Last night was a time of thought and reflection trying to process the news and trying to not freak out.  I have to remind myself that our bodies are strong and capable vessels of life and I have to trust that it will rise once again to the challenge put before me.  That I simply cannot worry about "what if" because it isn't worth the energy and time.  You can scare yourself shitless worrying about the "what if".  So I am working on filing away the news and not worrying about it.  If I worried about every "what if" Dr. L and I have discussed, I would be a neurotic fool and probably long gone by now.

I am going to focus on the here and now.  Focus on the approaching summer.....Philip getting out of school....gardening....flowers....the birds I hear outside....the good stuff.  The good stuff that everyone should take time to notice and focus on.

I'm being all artsy fartsy

This past week has found me crafting or doing art projects.  It all seems good until my compulsive side kicks in.  I have to keep reminding myself it should be fun.

I have a dear friend, Stacy, who is getting married in July.  She asked for my help with a photo booth album.  Well an album is easy so I offered to help with the pages and rest the stuff to go with it.  Long story short, we decided it would be best to have journal boxes for people to sign or leave a message.  Because the page is white, we decided we need a mounted journal box...and we need about 150.  I had hoped I could rope someone else into it but my cheap side kicked in and I ended up doing it myself.  It was a good project to do over the weekend while watching TV.  I got them done and was pretty pleased with myself.  The funny party is my right bicep was so sore from using "the chopper"!

 

On Sunday, Philip and I ventured up to Mars' house to attend the make up Soutache' class.  My Dad had given me some jewelry to work with and I took that on as a challenge.  I enjoyed learning the new technique and I really enjoyed the smaller class size.  Philip worked on making some steam punk items.  I tried to make the "over the top" jewelry into something a little more pleasant.  No mistaking though, Soutache' items are not for the shrinking violet.  They make a statement!

 

 

And if that is not enough, I joined the "Shop Hop".  This is a scrapbook event that happens annually in the area.  There are 10 scrapbook shops between Brigham City to Payson.  You have a punch card and you visit each store over 4 days, make a purchase, and get your free page layout.  Now don't get me wrong, I enjoy scrapbooking but this was something Nola said she would love.  Plus it was for 12X12 pages and I use 8.5X11 so this was for her.  Who can refuse that request?  Nola had hoped I would visit the Salt Lake stores but I didn't see any reason I couldn't do all of them (damn compulsion).  I visited some really fun scrapbook stores - a few I would love to spend more time at and absolutely take Nola when she is in Utah again.  Several of the stores had a "Make and Take" which is basically a crafty item you make in the store and take it with you.  Those were free and kind of fun since all the supplies were right there.

Don't judge my mess...I've been busy.  :-)

 

Not the same thing but I was just notified today that I won 2 more marketing industry awards for my work this past year.  I won 2 Hermes awards!  One platinum award for my communications campaigns last year and a gold award for my client rebranding efforts last year.  Not really artsy but it does require some loose interpretation of my creative eye.  In all honesty, it takes a good team to have award winning success.  It is nice to be part of a successful team and to see recognition for the efforts.

 

So the obvious missing thing in my artsy report is the Bottles of Hope.  You might think I am being a classic procrastinator but that is simply not the case.  We could blame Bejeweled addiction Nola enabled while she was here but really it is a lack of time and working with prioritization.  I see Dr. L on Monday.  I would LOVE to take my bottles in then.  I will give it a Girl Scout effort this weekend but if not, I'll get to it when I can and take them in once done.  But I know you guys will hold me accountable...and I keep thinking of poor Rochelle (the office manager at Dr. L's) waiting and waiting for my bottles.

 

Hope you are having a good week.  I'll post Monday and let you know what Dr. L has to say.