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