Merry Christmas And A Long Overdue Blog Post!

Hello Everyone!  I hope this time of year finds you all happy, healthy (even if you have cancer!), and able to spend a little extra time with the ones you love.  I actually rode on my bike trainer this morning for a while.  YAY!! I don’t feel well enough to do much exercise most days, so today is a GREAT day!  At the end of infusion they give me a neulasta shot.  That helps boost my immunity cell production which is great!  But, it also makes my bones ache.  After Round 1, I swore I needed a hip replacement!  Rounds 2 & 3, I need two knee replacements and a rotator cuff!  I’m excited for the aching to eventually stop and to be able to get back out running, biking, and skiing.  Sniff sniff! 

I have decided that there really is NO GOOD time to go through chemo, but the holiday season is exceptionally tricky!   Luckily, and I feel very blessed because many people do not have this luxury, I was able to negotiate an extra week in between rounds 2 & 3 so I felt great for Thanksgiving and I will feel good for Christmas too.  Had I not gotten the extra week, my treatments would have been on Thanksgiving and Christmas!  I completely missed Halloween (details coming). 

This time of year is crazy busy for the Williamson family so again, first thing, I have to give mad props to my amazing husband for everything he is doing.  He is the truly Mr. Amazing!  He cooks, cleans, does laundry, drives kiddos around, works, etc. etc.  I could not do this without him.  And, his work has been amazing…he has been by my side at every single one of my infusions.  I love you Troy Williamson!  And, my kiddos are troopers!  Even Sloane is concerned.  She comes and checks to see if I still have my port and then asks:  “You need more chemo mom?”  I tell her yes and then she pats it and says “It’s OK!”  My boys have been so helpful too.  I am very blessed!

And it is working!  You can hardly feel my lymph nodes any longer!  I don’t think I stated this before, but when they scanned me before I started chemo, I had internal nodes that were as big as a 5 in my chest and abdomen.  That is about the size of a racquetball, so that did explain why I was starting to have a hard time with breathing etc. 

And, so far so good on the hair front.  I still have a full head of hair.  Other than the port, there are no visible signs of my treatment!  I really think if it wasn’t for the side effects of the chemo and neulasta, I’d be feeling like a million out-of shape bucks!

Sooooo, two questions I’m sure you have:

1)   How’d rounds 2 & 3 go?

2)   Why have you not posted in so long?

Ok, ok…here are your answers:

Round 2

I must have done something bad that I still need to repent of because I went to hell and back in round 2.  It was NOT pretty!  I was unable to post at all during that fun experience. 

I went for infusion Tues – Thurs of that week.  Friday morning (the day when I know I start feeling awful) I woke to screaming kids.  They woke up downstairs and found water… a lot of it!  Our 50 gallon re-generating water heater had sprung a leak and unleashed her fury all night long.  Troy and I ran downstairs and turned off the main water and then started to try to clean up.  We soon found that it was a job we could not handle…and the puking started.  Let me just say it is not so fun to be puking in toilets that don’t flush.  Ugh!  I went to the neighbors to use their shower which I threw up in (thanks Wheelers and sorry)!

Thank goodness for disaster clean-up teams and insurance!  But, honestly….when it rains it pours…literally.  I’m sure we are marked at all of our insurance companies with big red stars:  Watch out for the Williamsons.  They cost us a lot of money!

Anyway, I really think that I just did not get a handle on the nausea in the beginning and then I was behind the 8 ball.  But, it went from bad to worse.   I went up Friday afternoon for the neulasta shot and then came home.  That happened to be Halloween.  

I passed out on the couch (literally).  I wanted to be part of Halloween, but I don’t remember a dang thing.  I don’t know how to explain in written words but it was honestly a crazy state.  I’ve been told I talked to visitors and saw my kids dressed up, but I DO NOT remember hardly anything from that night.  Friday and Saturday were a non-stop puke fest.  That, I do remember.

On Saturday, I remember getting up and going to the shower hoping I would feel better.  I got out and crawled to my bed, naked.  I remember getting onto the bed and laying down thinking I would just recover for a few and then go get dressed and brush my hair.  Somehow (thanks Troy) I woke up dressed and with Medusa hair about 9 hours later.  There were bowls full of vomit next to me, so I at least was coherent enough to use the bowls but I don’t remember doing it.  Why was Troy not emptying them??? Well, he came in asked if I was ok, and I had a conversation with him assuring him I was, so he took the boys to a cyclocross race that they were excited about.  They called and talked to me, took pictures and texted them, I replied to texts, etc.  I DO NOT REMEMBER ANY OF THIS!!  I have chemo induced amnesia for about 48 hours of my life.  It is the craziest dang thing! 

Sunday was better, the nausea got a bit better and I remember that day.  By Monday, I went in to work, because it is right by Huntsman and I was sure they were going to give me an IV as I was down 8 pounds and looked like a grey ghost.  As soon as the clinic opened, I called and they asked if I had thrown up that day.  I said no (it was a miracle!) so they said, just drink fluids, don’t come up!  UGH!!!  I guess I’m not as pathetic as I thought!  (Actually come to find out, when I met with my oncologist before round 3, she was mad they said that.  I should have been taken up there on Saturday, but poor Troy had delirious me telling him I was OK.  You live and learn!)

In-between Rounds

So the Monday after Round 2 I went to work.  People keep saying:  “Why would you do that, take it easy!”  Well, here’s the deal... it is what I do.  If I stay home and everyone else is gone, I stay on the couch and feel worse.  It is just as easy for me to be sick at work.  I can take a nap on my office floor if I need to.   Also, I love what I do and I’m really busy!  When I’m out the week prior for infusion, I get behind so it is nice to get back into the swing of things.

So why did I not post, well after Round 2, I went back to work.  Dug out of the hole from being in infusion and then went to Portland.  I’ve been teaching a class this semester on the Federal Reserve and Monetary Policy.  The culmination is a big symposium where students act as FOMC members and members of the FED are in attendance.  Lewis & Clark College had a symposium before mine, so I flew up to see that.  Right after I came home, I was in charge of a trip with my Business Scholars to San Francisco.  We visited Apple and Google corporate offices and went to the UofU/Stanford football game.  Troy was able to come along.  It was great!

Then I put on the Symposium at the U.  It was a great success – whew!  I have awesome students!!  

Right after that, I hopped back on a plane and went to watch Frasier run at the Nike Cross Country Region Championships in Phoenix.  (A great big thanks to my good friend Rachel Lundevall for hosting me in her home and driving me all around Phoenix!  I had a great time!)

Frasier’s team took 2^nd in the region so they earned a trip to NXN (Nike Cross Country Nationals) in Portland!

November was non-stop travel and then Thanksgiving.  I was grateful for that extra week of feeling good!  I was able to get some shopping done, set-up Christmas and eat good food!  And, I enjoyed every minute of it!  Now, my storage room looks like the Amazon shipping warehouse!  I hope they sent the right stuff!  I have a lot of wrapping to do!

So, my friends, that is why I didn’t post until now.  I literally can’t believe it is already almost Christmas.  November zoomed by!

Round 3

Right after Thanksgiving I went back up to Huntsman for Round 3.  I was super nervous about this round after 1 & 2 being such enjoyable experiences!  But, like I said previously, we met with Dr. Glenn and her PA and told them about Round 2.  They weren’t too happy about that, so they decided to try something different with Round 3.  On the third infusion day, they also infused a long-lasting anti-nausea med.  It essentially shuts down your gut for 72 hours.  So that brings its own set of constipation problems, but it was SO WORTH IT!!!  I made it through Round 3 without a single throw-up!  I did dry heave multiple times and sucked on my anti-nausea suckers a lot (thanks Mom!) but I did so much better and rebounded so much faster too!!  Yahoo!!

For the constipation, I had to take a lot of senna, stool softeners, and miralax, so that was fun, but overall it wasn’t too bad!  I’m doing the same thing for Round 4 and praying it works again and wasn’t a “fluke”!  I had a lot of people praying me healthy for Round 3, because right after I was done we loaded in the car and drove to Portland to watch Frasier at NXN.  The drive to Portland is llllloooooonnnnnnggggg!  Troy drove the whole thing while I rested in the passenger seat.  Thanks again Troy…you  rock!  We made it to watch Frasier and his team run.  They took 6^th IN THE NATION!!  The girls team also made it and took 15^th!  Davis has an amazing program with even more amazing coaches.  We feel so blessed to live where we do and have such great opportunities for our kids.

Additionally, we have awesome friends and neighbors!  We have received notes, meals, treats, babysitting, rides for our kids, tickets to events, etc. etc.  I haven’t done thank you cards and I feel really bad about that.  I hope this suffices.  Please know how much we love and appreciate you and I only hope that I am able to repay the kindness shown us lately.  It is actually really hard to be on the receiving end.  I would much rather be the one taking dinners to someone (not that I wish anyone else sickness) but it is hard to be in a place where people are offering you service.  I’ve had to tell myself that they are getting blessings AND we are truly experiencing what Christmas is all about….kindness, love, and charity.  So, thank you from the bottom of my heart!

My sister Liz is doing something awesome for me (and her)!  She signed up for IronMan Lake Placid and is raising money for cancer research along the way.  KSL wrote an article about her found here:   http://www.ksl.com/?nid=1286&sid=32676991

What Liz wrote about me on her fundraising page is really, really awesome!  That is found here:  http://support.themmrf.org/site/TR?px=1770029&fr_id=1730&pg=personal

Please go read that, don’t worry, you don’t have to donate if you click to read her post.  But, THANK YOU to everyone who has donated!  It is overwhelming and amazing!

Frasier also designed a shirt for his Marketing class.  He is so cute!   All proceeds go to Huntsman Cancer Research.  You can check that out here:

http://www.booster.com/cancersucks-huntsmancancerfoundationfundraiser

I was talking to my sweet aunt last night and she teared up talking about how it is unfair that I worked so hard to be in great physical shape and that is all going downhill (literally, I’m going to be starting from ground 0 when I get back out running and biking!)  She is so awesome!  But, and I really mean this, as I go up to Huntsman, I see people who are so much worse off than me.  I truly feel lucky and blessed (most of the time!) for what life has thrown at me.  And, it has taught me about being kind, patient, humble, and grateful.  Life is just too short and uncertain to get so worked up about the things that we often think are big deals!  I’m grateful that I’m learning that the hard way and that I’m able to put that into practice most days!  I really feel like I’m a better mom, wife, boss, and co-worker because of cancer.  It has given me the opportunity to receive charity, to truly witness kindness and charity in action, and to understand a bit more my Savior Jesus Christ whose birth we now celebrate!  I know that this life is all about trying each day to be a little bit more like Him and even through awful things like cancer, we all learn to be more like Him!   

Round 4 is right after Christmas.  I’ll be there on my birthday and New Year’s so that is kind of a bummer, but I’m hopeful it will be like Round 3 and not too bad.  I’ll post after.  Until then, Have Yourself A Merry Little Christmas!

    

Round One – It’s been a knockout!

Hi All-

Here is the chemo round one update.  Truthfully, this is the first day I’ve really been up to posting.  Chemo truly did knock me out!  The thing I really wasn’t prepared for was the exhaustion and the headaches.  I thought I’d be able to play on my computer, work, read a book, etc.  But, no!  It has been best to just rest with my eyes closed rather than to try to do anything else.  Trying to focus on things has caused my head to pound badly! 

Today is the best I’ve felt since last Wednesday morning, so I’m hoping I’m turning the corner.  And, I’m learning that probably the best policy is to take it really easy and as much as possible…sleep it off!

So, I started chemo last Tuesday.  They unbandaged my port, accessed it, I met with the doctors, and then went into the infusion suite.  The suite is amazing, with a view of the whole valley.  The nurses are as wonderful as can be.  They make it as comfortable as they possibly can!  I was there from 9 am until 5:30 pm.  Before they actually infuse with chemo, they give me a bunch of pre-meds.  I know I’m taking meds to help my kidneys flush the dying cells, meds to hold off any reactions, Tylenol, anti-nausea meds, and Benadryl.  There are others, I can’t name them and don’t really care what they are as long as they work.  The anti-nausea and the Benadryl, I believe, are what make me sleepy.  Anyway, I slept my way through Tuesday’s entire infusion!  Poor Troy, he’s been the trooper who just keeps a long, boring vigil by my side while I sleep!   My mom and step-dad came Tuesday, I remember that briefly.  Thanks.

Wednesday morning I woke up and actually felt pretty good.  I rode my bike trainer really slowly for ½ hour and headed back up to Huntsman.  I did the pre-meds and then began infusion.  Wednesday was not the greatest! I’m giving you all the details….sorry if there are too many but I’m a curious sort and figure you are too.  Wednesday wasn’t supposed to take that long, but when they would turn up the drip, I would get really bad chest pains and HORRIBLE, HORRIBLE gas pains.  Troy went and bought GasX and it didn’t do a dang thing.  They turned off the drip a few times to let me recover before resuming.  A couple of times, I tried going to the bathroom.  Maybe that will help – right?  Well, I was BARELY trying, (like barely pushing) and it would drop my blood pressure, I would break into a cold sweat, start panting, and nearly pass out.  The first time that happened, I had to pull the emergency cord and be rescued via wheelchair, pants down!, from the bathroom!  And, no, I didn’t actually go.

After recovering from that awesome experience, we (Troy went in the bathroom with me) tried again.  Once again, nurses and wheelchair to the rescue!  I’ve officially lost all dignity!

So, add to the list of meds, stool softener!  We need to make going potty as easy as possible for me!

After Wednesday’s 9:30-6 experience, I felt pretty icky, I had missed Frasier’s cross-country meet, and was frustrated!  I went home and just slept.  Thursday, I did not want to go back!  But I did and it went much quicker!  I even made it home and made it to Elijah’s parent-teacher-conference.  It was nice to feel like a mom again.  But, as the night wore on, the worse I felt.  From Thursday night until today things are actually quite a blur. 

I had to go to Huntsman on Friday for a shot.  They decided to add that into my regimen to help my bone marrow recover more quickly.  Troy also ran the St. George marathon yesterday and was driving down Friday afternoon.  And, the Huntsman caseworkers arranged a tour for my kids so they could see what was going on and not be scared for me.  So, I got up and rode the bus to my office Friday morning (bad idea as I woke up extremely nauseaus)!  And then the family was going to pick me up and take me for my shot.  I didn’t have to teach, but classes were going and I went in to see my students.  I went back to my office and laid on the floor for an hour.  Then I went back out to end class and gave about 25 students an awesome projection show.  When I threw up, I did it like a champ!  I remember my TAs holding my hair back and patting my back.  Thanks ladies and sorry to the awesome SFEBB custodial crew! 

After that I went back to my office and laid there until Troy got there.  We went to Huntsman, they gave me a bunch of anti-nausea meds, gave me my shot, then laid me on a couch and I fell asleep.  The kids went on the tour without me. L

I really don’t even remember much about the next 36 hours.  I made it to the car, got situated and fell asleep.  Next thing I remember, I was in St. George at Troy’s awesome cousin’s (Adam & Joi Showell) house.  I laid on their couch and went back to sleep.  At some point, Troy woke me and I took some meds and ate a breadstick.  I don’t remember going to bed, but I ended up there.  I remember Troy leaving for the marathon.  Then, by grace, I woke up, and felt pretty good.  So I showered and then Adam and Joi helped me and the kids get down to the finish of the marathon.  I sat in a soccer chair in the shade, and was able to see Troy finish…he did AWESOME…and a bunch of other friends! 

My friend Stacia ran her first marathon (as me!  Shhhhhh!) and did awesome!  She said I was her inspiration. J  Thanks Stacia!  Also, a couple other friends, Sherrie Shepherd and Tiffanie Evans-Browne qualified for Boston and told me afterward that they thought of me when things got hard!  Plus, great job to Jessica Wilding-Walker for killing it with a 3:13!  Go DXC!  And also all my other friends who ran… Mike Smith, Mark Chamberlain, Nikki Hancock, Brett Wilding, Cherie Pierce-Mask, who am I missing?? YOU ALL DID GREAT!

I’m not going to lie, as I was sitting there watching the race and seeing all kinds of people in great shape, I started to feel a bit bad for myself!  I was signed up for this race.  I was in great running form 4 years ago.  I was qualifying for Boston!  Now, look at me.  BUT, I’ve had bad runs that then make me grateful for good runs and I know that in this journey I will also have bad days.  Those are going to make me sooooo grateful for the days ahead when I will feel great again!  And, when I will run again!  I know that will happen, in fact, last but not least, great job to my cancer buddy Kevin Robson, who also has CLL and finished chemo about 6 months ago.  He ran the marathon and finished yesterday!  Kevin, I’m gonna be just like you in a few months!!

After the race, I fell asleep in the car.  Troy showered, packed up and then we went to a Mexican restaurant.  I ate some soup. 

Then we went back to the car and I slept the whole way home! 

When we pulled in the driveway, I lost it in the bushes.  Every time I throw up, I’m just imagining it’s a bunch of dead cancer cells exiting my body, so as gross as it is, I’m OK with the vomiting!  Then I went in, laid on the couch and went back to sleep. 

I did wake up for a few to see my beloved UTES beat UCLA!  Woot woot!  Then went back to sleep.  So, since Friday morning, until Sunday morning, I’ve been awake for maybe 6 hours!  Today I’m awake, but just laying on the couch.  I’m going to rest easy today and see how I feel in the morning.  I’d like to go to work if possible.   

Thanks to everyone for the prayers, meals, to my dad for the cherry tomatos today (that’s what sounded good), texts and messages.  If I don’t answer, please don’t take it personally.  I’ve been so out of it, its been hard to respond sometimes.

As I lay here today though, I’m very grateful.  I get a nice conference Sunday to just relax on the couch.  I feel a bit better today, my bones aren’t hurting nearly as much as we thought they might, and I know that this is all to make me feel better and be a better person.  I don’t know why I needed cancer to figure it out, but I am appreciating so many little things about life.  It was awesome to see people do well yesterday, I love my kids and husband and how awesome they are, they are absolutely taking charge and taking care of me!  I love how Sloane set the horse up to the Little People Thanksgiving table so that he can eat with them too,

and best of all…..the chemo is already working!  My lymph nodes are already smaller!  Yahoo!

If you are wanting to visit me, PLEASE make sure you are healthy and not battling a cold, etc.  Also, my doctors have asked that everyone I come in contact with please get flu shots as soon as possible.  Thanks for accommodating or staying away! J

Luvs and Rock ON!  

We’ve Arrived At Port!

That sentence is so much better when you are on a boat!  Oh well…..

Here’s the promised update on the port surgery.  WOW!  This is getting real!  What a day Friday was! 

I had to start fasting Thursday night so that I had an empty stomach for the anesthesia.  Friday morning, I got to Huntsman and they really quickly took me back and started prepping me for the port surgery.  I was given an IV, and then they took me back.  Once in the surgery room, they pulled my hair back, but on a cap, oxygen in my nose, a mask on my face and then built a tent over my face and body, so that they only place that was visible was my neck and chest. 

Then they had me turn my head as far to the left as I could.  I had to be awake to hold my breath at times.  But, I was heavily sedated.  I remember holding my breath, but I was kind of in la la land.  I know they used ultra-sound and x-ray to place the port.  It is in my chest on the right side.  My port was placed deeper inside so that the skin will actually heal over the top.  Then, I will be able to shower, etc.   When they infuse the chemo, they will just find the port access under the skin and then poke a needle through and into the port.  Voila….easy peesy!

I have two incisions.  I’m not 100% sure where everything is, but the port access is on my chest, then there is a tube that goes up into my neck and another that goes into an artery right near my heart.  They told us that blood flow near the heart is 16x stronger than in your arm, so they place it there to get the meds through your body quickly.

Right now, my incisions are quite sore.  But, worst of all, all the medical tape is pulling on my skin and really bugging!  I’m actually excited for Tuesday so I can get all of the tape removed!!!  I also cannot slouch.  If I don’t have my shoulders back, then my incisions hurt worse and it is hard to breath.  So, that may be a blessing, cancer may improve my posture immensely! 

Back to Friday, after I got the port and into recovery, I was doing OK, UNTIL…I had to start drinking the contrast for my CT scan.  I had to drink two bottles (I’m guessing 24 ounces each) of that junk!   I think the combination of anesthesia, an empty stomach, and then the nasty berry flavored metal chalk drink played havoc!

I was supposed to drink 1/3 of the bottle every 15 minutes.  I downed the first portion and almost immediately felt extremely nauseous, my blood pressure dropped, I got really sweaty and clammy, and my blood oxygen dropped.  I had to keep the stuff down, so it was really miserable!  They gave me oxygen,  IV fluids, anti-nausea meds, and some more sedative.  I managed to drink it all, keep it down, and have the full body CT scans.

Then, back to recovery.  I had an absolute migraine, a really upset stomach, and a throbbing chest.  I was ready to go home!  I pretty much stayed on the couch all night.  Yesterday, aside from a quick trip to find rain gear for the boys for the Utah football game, I laid on the couch again.

Here’s the deal….I think I will like having the port after I heal, but right now, I’m still in recovery mode, so I’m not super loving it yet.  To add insult to injury, there was an older lady in recovery right across from me.  She was from Elko, NV, was sooooo loud,  and was Troy’s entertainment.  She and her husband (friend?) discussed getting the medical marijuana prescription so she could then give it to for her daughter, the difference between Lady Gaga and Katy Perry (Conclusion: they are both punk rockers, but Katy is prettier and wears shorter skirts, the guy can’t stand that Gaga Lady), and SHE DID GREAT!!  She didn’t have to do a CT, just the port, but she was up talking loudly, the anesthesia apparently didn’t affect her at all, and she couldn’t wait to get her clothes on and leave.  I…on the other hand….was pathetic and couldn’t even sit up!  It was really ticking me off!! 

Alas, I’m home now and feeling better all the time.  I’m really excited to get the bandaging off.  I think it will feel a lot better then.

One other thing…check out all the meds I have to start taking!  This is insane!  They actually printed me out a calendar to keep it all straight.  Whew!  No wonder my stomach is upset!

Thank you to everyone for their prayers and kind words!  I’m sore, but in good spirits.  This is going to all be worth it here very soon!  Also, my family has been great.  They are taking good care of me!  I’m also being spoiled.  My aunt brought me some beautiful flowers and my step-mother made me the most amazing quilt!  Geez Louise, everyone, thanks!  You are all too kind and I’m feeling very loved!

Let’s DO THIS!! Bring on the Chemo!

Yep, that’s right, it is time for chemo.  First off, I’m fine.  Physically and emotionally…I’m fine.

Here’s some background info about why now is the time:

In March 2012, I was officially diagnosed with CLL.  At that time, I already knew something was wrong.  My lymph nodes were swollen on the back of my neck and in my groin area.  So, in my opinion, I’ve probably been “noticing…struggling?” with symptoms for about 5 years.

When I first found out, I said “hook me up and get rid of it” and they said “wait”.  Why?  Because if you can live with the symptoms and not have them significantly affect your quality of life then you should wait so that treatments can be improved, you can avoid the side effects of chemo, you don’t have to change your life schedule, etc. etc.

But, what if your life schedule is being compromised due to cancer?  Well then, let’s take care of it.

I am at the point where my lymph nodes are getting bigger.  The ones in my neck, groin, and armpits are visible.  My left armpit has a node the size of a golf ball.  Try putting your arm down over a golf ball all the time…it gets annoying. Try sitting down and squishing marbles in your groin area non-stop and it gets annoying.  Plus, they say I’m a bit odd, but they cause an ache that I can constantly feel.  My nodes are always achy.  They also say I’m odd, because if I were overweight, like really big, then I wouldn’t be able to feel anything and my compromised lymph system, aches, sweating, lack of energy are just like what an obese person feels.  So, I’m a fit girl in an obese body I guess.  It takes a lot longer for them to catch CLL and take care of it in an obese person.  Fit people tend to feel and get annoyed by the effects a lot sooner.  Go figure…

To this point, my lymph system has been doing a good job of collecting the cancerous B cells and holding them in the nodes all through my body, but they don’t die.  They just live and colonize in my nodes.  It’s a B cell party that I’m ready to crash.

On top of all of that…I sweat ALL THE TIME.  When I’m cold, I have sweaty arm pits.  When I’m not being active, I’m sweating.  It’s the weirdest thing, because I never used to sweat.  Even running my fastest marathon, I never dripped sweat.  But now, I’m a sweaty fool.  So, it is obviously my lymph system.  It is like when you are sick and your body is fighting and you break a fever and sweat.  I am constantly trying to kill the cancer and it causes sweat and exhaustion.  It annoys me soooooooo bad!

I’ve tried to mask the exhaustion pretty well.  Once I get up and going, I can function.  I’m still aerobically active.  I run, bike, or do yoga 6 times a week.  The other day I ran 6 miles.  But, it was a 12-minute pace and I was working harder at that pace than I used to work to run a 7-minute mile.  I can get up and go to work and be productive and high-energy.  But, then I come home, sit on the couch, and hardly move the rest of the evening.

My family has had to put up with the brunt of it all.  And if any of you ever question…Troy is AMAZING!  He is a husband, dad, seminary teacher, maid, chauffer, gardener, cook, etc. etc.  He has kept me healthy and functioning for a very long time.  But, in a weird “cancer messes with your head” sort of a way, that ticks me off.  I want to be functioning.  I don’t want to be lazy.  And, if anything, the cancer breaks my heart not for me but for my family who has to deal with the side effects.  In the past 7 years, Troy has lost both parents, had a wife diagnosed with cancer, and has had to stand by and watch me slowly losing energy.  If anyone has it rough, in my humble opinion, it isn’t me…it is him and of course my kids as well.

So, am I ready to be back????  HELL YA!  In fact, I’m pretty sure I’m going to be a world-class athlete after chemo.  Watch out racing world! (You all know I’m kidding right!?!)  But, I am hoping I can get back to running under a 10-minute mile.  That would be awesome.

So, last appointment, Troy, my doctors, and me decided it is time.  The hope is to go through chemo and get to a “remissive” state meaning they can’t find any cancer in my labs.  Because my B cells form incorrectly, it will likely continue to happen, and at some point hopefully in the far far far distant future, they may (likely will) see signs again, but we hope that is at least a decade…maybe even longer…and that will give more time for research and hopefully a freaking cure!

I’m choosing to believe that this has happened in me since birth and it took 34-35 years to see signs, so I’m shooting for remission and another 34-35 years of no signs of cancer.

So now, let me answer the questions I’m sure you all have:

What the regimen?

I’ll be doing FCR, three drugs (fludarabine, cyclophosphamide, and rituximab).  Again, and I know it is weird for some of you, but I am choosing to just trust my doctors and hope for the best.  I am choosing to NOT read up about my cancer, all the chemo side effects, what my life expectancy is, etc. etc. because if you get on the internet, it is never what you want to hear and that does me NO GOOD emotionally and I believe physically too.  I’m am choosing mind over matter.  So, if you read up and find something bad or stressful, please keep it to yourself.  Cancer, IS NOT GOING TO KILL ME and I am not going to die until I hit 100 so there you go, end of discussion.  The chemo is going to melt the cancer, maybe make me a bit nauseous, hopefully give me energy instead of zap it, and get me back to good ole’ Alayna.

How often?

3 consecutive days being infused, then 28 days off for 6 months.  18 total infusions.

Where?

Huntsman Cancer Hospital Infusion Center

When?

I go in next Friday for CT scans and port placement.  Again, the thing I am the least excited about is the stupid port.  But they assure me it is better, once placed will be hardly noticeable, and is the better option than having IVs each time.  The port will be under my skin most the time (the skin will heal over during the 28 days off) so I can still shower, exercise, etc.  I start three days of chemo the following Tuesday, Sept. 30 – Oct. 2^nd.

What are your restrictions?

At the moment, only Vitamin C.  I KNOW…what the?  Well in petri dishes, cell walls become stronger when exposed to Vitamin C, so they want my cells nice and weak.  So, they are taking away my Zipp Fizz, sniff sniff.  First I give up Diet Coke and now Zipp Fizz.  I’m actually kind of beside myself about this.  The other thing is…if you are sick AT ALL, stay away please.  I love you but I don’t want to see you and your germs.  As we progress, they will let me know if I have any further restrictions.

I intend to continue working and doing my thing.  They told me if I feel up to it, I can exercise, etc.

The weird thing is, for most people, say breast cancer…they feel great, find out, start treatment and then feel awful.  I have progressively been feeling worse, and the treatments are supposed to start working right from the first time, so in some patients, aside from some nausea and upset tummies they actually start feeling more energetic right away and they see the lymph nodes quickly start to shrink.  I have the weirdest dang cancer!  But, if you gotta have it, mine’s an OK one to have!

How sick will you get?

We don’t know.  A lot of patients do great because these are very targeted therapies.  I’m hoping I feel pretty good through the whole process.  They will give me some anti-nausea meds that they think will become my best friends.

Will you lose your hair?

We don’t know again.  Some do, some don’t.  Honestly, I could care less about my hair.  We Williamson’s know how to rock a bald head, so if I lose it, I lose it.  Will I feel like a new woman in a few months….HELL YA! Woo hoo!

How are you emotionally?

I’m good.  I swear!  I’m ready to feel better.  I’ve prepped myself for a long time for this day, I’m kindof glad (in a weird way) that now I finally get to fight and teach cancer a lesson.

How’s the family?

They seem to be great too.  They’ve been prepped.  They know this is all to get me better and that I’m not going anywhere.  They may get upset if they see me sick, so be on the lookout and give them a hug, but other than that, we honestly are doing well.

Do I need anything?

At the moment, nothing but a few prayers directed our way.  That’s really it, but, I know I have a ton of people who love me and I’m not afraid to let you know if I need something.

I think that covers it.  I promise I will update the blog frequently over the next six months to keep y’all posted.  Next update will be after next Friday’s CT and port appt.

ROCK ON!

Alayna

My Crazy Life

OK.  First, I’m sorry!  It has been forever since I updated.  I wrote a post and then got locked out of my blog.  Then I lost the post and my patience.  That was about 6 months ago.  Now, after actually spending 1.5 hours figuring it out, I’m finally able to post again ON MY OWN BLOG!

Second, my life has been crazy.  Like, really crazy!  I know…everyone’s life is busy.  I’m not saying I’m different than anyone else, but when I prioritize, the blog has never ended up at the top.  I think it is because it actually causes me to really stop and think about my cancer.  The busier I stay and the less I think about it and dwell on it, the better off I seem to be (emotionally).  I’ll get to the physical in just a second.

Speaking of, the past few weeks have been filled with thinking about health.  First, Troy’s father, Skip, has been battling Alzheimer’s.  He is literally in his last few days.  We are at peace with this.  He has suffered a lot and it is time to go home.

We’ve also gotten calls about both of my 95-year-old grandparents being in the hospital.  My grandfather had pneumonia and then my grandmother who is about 80 pounds had what they thought was a slight heart attack.  It turns out it was a stress and exhaustion attack from trying to take care of my grandfather.  Poor thing!  

Then, Bodie needed glasses and my uncle got admitted to the ICU in Arizona for pneumonia and fluid around his heart.  And then (no I’m not done!) Troy’s brother went to the ER due to kidney stones.  Geez Louise!  With all that going on, you’d think I’d get a break.  But, no.  I still have cancer – dangit!

So, what has gone on since the last post?  And what’s on the docket?  Wow!  Where do I start?  I think I’ll just bullet point things:

·         * I was working at Overstock.com.  It is a good company, with lots of great people, but it wasn’t my passion.

·        *  I knew what it was, but I verified my passion when I spent 3 weeks in Paris teaching last June.  I love working at the U and working with students!

·         * Through all of my experiences, I’ve realized how important it is to “get” to do things each day instead of “have” to do things each day.

·         * My advice, if you aren’t happy, figure out why you “have” to do something and then figure out how you “get” to do that thing each day.

·         * I chose to “get” to go to work each day and secured what I honestly consider to be my DREAM job.  I went back to the U of U full-time in December as (are you ready for this crazy long title!?!)  Associate Professor of Finance (Lecturer) and Associate Director of Business Scholars.  I love it!

·         * Backing up a bit, right after Troy and I went to Paris in June 2013, we made a 12 hour with layover trip home, hopped in the car and drove 12 hours to Coeur d’Alene, Idaho.

·         Two days later we competed in – AND BOTH FINISHED! – the Ironman!  All 140.6 mile of it! It was AWESOME!  I’ll do a separate post on that next.  And, as a sidenote, I’ll be speaking about this at the upcoming BYU Women’s Conference on Thursday, May 1^st.  If any of you are planning on being there – come hear me speak! J

·        * Troy and I are also racing in the St. George ½ Ironman on May 3^rd.  So right after I speak, I’m heading to St. George for that race.

·         * Part of my new job includes some international travel and teaching – I know rough life – so I’m heading back to Paris and London two days after we get back from St. George!  I’ll be there for 9 days.

·         * Then, this July I’m teaching in Paris for a month.  The whole family is going!  Because we will be in France, Troy and I signed up for the full Ironman Nice France at the end of June!  We will swim in the Mediterranean Sea, bike in the French Alps, and then run through the town of Nice!  Can you even imagine!?!?

·         * So, my life is crazy because of: 4 kids, one amazing rock-star husband, a full-time job with sometimes funky hours and travel, and a mega-training plan for the Ironman. Whew!

·         * Oh ya, and to boot, I’ll still have that pesky cancer.  Grrrrrrr!

It may seem that with everything going on, I feel great and have tons of energy.  And, I do most of the time.  But, cancer is the gift that keeps on giving.  So, I’m now giving you probably way too much information but here are some of the bothersome side effects I’m dealing with:

·        

My lymph nodes are enlarged.  Most I keep hidden, but a couple on my neck are visible.  They are actually the least bothersome though.  The ones in my armpits and groin really bug.  They get in the way, ache, and make some activities like yoga and sitting for longer periods of time extremely uncomfortable.

·         

My body is fighting really hard to keep the cancer in check, so it makes me tired.  Sometimes really tired.  Like, it hurts to function tired.  I think a side effect of exhaustion,unfortunately, is I get ornery and then my poor family gets the brunt.  I’m trying to work on that.  They are the people I should actually be the very least ornery with!

·         I sweat – a lot.  It is extremely gross.  I hate it!!!  When I’m cold, I have sweaty armpits.  When I go to sleep, I sweat.  I can out night-sweat some of the best menopausal women out there.  How sweaty?  I wake up drenched and freezing sweaty.  I will be so glad when I’m not sweaty anymore.  It makes undergarments and clothing really uncomfortable at times.  That too, makes me ornery.  Really ornery.  As I type, I’m getting ornery.  Did I mention how bad I hate sweating? Grrrrrrr.

I still go in for checkups every 2 – 3 months.  Nearly every time I’ve gone in my white counts have gone up, but at a relatively slow pace.  But, the oncologist had told me that would eventually change.  She warned that the white blood cells would start taking over.  They have told me that reasons for chemo would be:

1)    Nodes getting too large and making normal life or body functions difficult.

2)   Extreme exhaustion.

3)   Inability to fight off infections and sickness.

4)    White counts increasing at a really rapid rate – like doubling in short period of time (2-3 months).

Well, guess what….my white counts have doubled in the past three months.  Darnit! 

So what does that mean?  Well, we aren’t 100% certain, but if my oncologist was a betting woman, she would bet I need chemo in the next year.   Now, before you freak out.  Let me say this:  I’m actually coming around to the idea.  It is going to bring my levels back down, melt away my swollen nodes, stop my sweating, give me back energy, and I’m going to get back to good ole’ life as usual for a good long time.  If the cancer grows back again, by that time, I’m certain there will be a cure.  And, I’m trying to help raise money all the time for research toward that cure!

Now, I’m NOT excited to go through chemo, but I can do it.  And the after-effects I am certainly looking forward to!  In my head, I’m the fastest athlete out there – maybe even world class – just think, if I can do two Ironman races with cancer, what can I do when I actually feel good!?!?  j/k

In all seriousness though, I actually feel really lucky.  As short as 30-50 years ago, this would have been a death sentence.  Now, my cancer is a life inconvenience.  The only thing that ticks me off is I’m so happy with how life is going right now.  I DO NOT want any interruptions!  But, I’d choose this over other inconveniences.  So, it is all good.

Now, how did the conversation go with Dr. Glenn?  Something like this:

Dr.  Glenn: “So, you are going to need chemo soon.  It is not urgent yet, but start thinking about life and when would be a good time.”

Me: “Well, hmmm, I’m training for the Ironman right now, and heading to Europe twice, so not until after July, but then its fall and I have a really busy fall schedule at work, so then maybe December, but wait that’s Christmas, so……..actually Dr. Glenn, you know what, there is really NO GOOD TIME to go through chemo!”

We all had a good laugh and then I said:  “In all honesty if I could push it to January that would be really good.” 

Dr. Glenn:  “Well, let’s keep an eye out.  I would guess this Fall, but we will see.”

So anyway, long story short, sometime in the next 6-9 months I’ll probably start chemo.  They predict that my counts will continue to keep doubling every couple months, which means by fall they will be in the “we need to treat now!” phase.  But, it is possible that they will slow back down.  That’s what I’m hoping.  We shall see….

When I start chemo it will most likely be about a 6-month process; being infused 2-3 days per month for about 6-months.  But, that will all be decided when it has to be.  I could care less about my hair, but I may not actually lose it as they have some really targeted drugs they are using these days.  That will remain to be seen.  The thing I’m actually least excited for is the damn port.  Ick!  In case you don’t know what that is, it is implanted in your chest, with a catheter that goes into your jugular vein in your neck for easy chemo insertion and blood lab draws.  I can’t stand having an IV in for 2 days, let alone a port for 6 months.  So, I’ll ask for some prayers in my direction when that time comes.

Until then, I’m asking now for happy thoughts, prayers, kharma, good juju, or whatever else you do that you can send my way.  I would REALLY like to not have to start treatment until January.  I realize that may sound crazy, and a lot of people with Acute cancers have no control, but if I can call any shots I want to beat my cancer once again and make it wait until January.   I also REALLY want to stay healthy enough and feeling good enough to rock the Nice Ironman.  I need to stay feeling good up through July.  Send me those January vibes!

Speaking of the Ironman…when I knew I was heading to Paris again, I thought: “I wonder what Ironman races are in Europe at the same time?”  Then I found out about Nice.  We gave it a lot of thought and decided – yes! – let’s make it happen.  Well, once we did and signed up then we started working on the logistics.  And, the kids caught wind of it and made a strong case for being able to come along.  And, well, this became the MOST expensive race/vacation I could ever imagine.  Think: international airfare for 6, lodging, food, baggage fees, extra baggage fees for race gear, super duper extra baggage fees for bike transport, rental of a bike case with wheels big enough to hold two bikes, etc. etc. 

We are making it happen (and I feel very lucky we are able to do it).  We may still be paying for the trip in 10 years – but the memories will be worth it – right!?! Ha Ha

Anyway, I have never done this before, but I am now.  I promise, we are paying for 100% of our trip and race, but I am asking people out there to make pledges regarding our race.  Everything we raise will be donated directly to CLL cancer research.  I was thinking that people could donate per mile we race.  So, $1 per mile would be $140.60.  $.50 per mile would be $70.30.  $.25 per mile would be $35.15.  $.10 per mile is $14.06 and so forth.  Troy and I will literally spend hundreds of hours training, thousands of dollars in training expenses and equipment, thousands of dollars on the race, and will race for up to 17 hours that day to cover 140.6 miles.  It would be awesome motivation to know that every mile we were covering was for a cause – one that is very personal to us.  So, if you are so inclined and able, we’d love your donations.  You can just donate to my paypal account:  williamsonfs@yahoo.com or obviously we will accept cash and checks.  I promise you, every dollar raised will be donated.

Well, this post is long enough.  Don’t worry – we are all good.  Even with a whole lot of bad health news lately, life is good, we are blessed, and I am just fine.  This world is going to be stuck with me for a VERY LONG TIME!

My love to you all!  Rock On!  And, please donate if you can!