What's been going on for the last 5 months

I am still trudging through this new life of mine.  

In November, I started a Fatigue Study.  This is not a SLEEP study. They know radiation fatigues patients, but they don't really have a clear picture of WHY.   I did this through a Colorado University, but at the Denver campus.  I actually participated in two studies, but with the same university.  Both had to do with fatigue.  The first one I had to go through assessments, take my blood, workout twice a week, and cardio 150 minutes of moderate or 75 vigorous a week.  It was definitely in the moderate zone.  TAKE YOUR OWN BLOOD?  It was a super cool thing where I attached it to my arm, pressed a button to poke me, and then it would drain into this tube.  I would then mail it back to them.  Every couple of weeks prior to my assessment, I would have to fill out these surveys.  Statements like Are you tired, Does your fatigue not allow you to do things and then it would be a 1-5 answer of not at all (1) to extremely (5) and 2-4 in between.  At the start of the study, I was in the 4-5 zone.  By the end of the study, I was in the 1-2 zone.  Exercise helps fatigue is what I learned.  For the most part, I've kept up with it.  

The second portion of that study with them was two assessments on a treadmill.  I would fly to Denver the night before and they would put me up in a hotel.  The next morning, I would go over to the campus, right next to the hotel, have my blood taken, walk on a treadmill for 36 minutes, have my blood taken immediately after, and then 30 minutes after.  While walking on the treadmill, every three minutes I would give them my exertion level.  For these two sessions, they paid me $200/each session.  Primarily, it paid for my plan ticket, but honestly anything to further cancer research I am game for.  The last session was at the end of February, and I stayed the rest of the week to visit with my cousins.  

A couple of weeks ago, I thought I felt a lump in my armpit.  I had an immediate doctor's appointment and she didn't feel anything, but just to be certain I went and had an ultrasound yesterday (Wednesday, March 25th).  The rad tech nor the doctor saw anything concerning.  I had been putting all my schedules on Dad's Schedule so my sisters could see them.  I accidentally put the ultrasound on there and tried to delete it, but my sister has notifications for everything and saw it.  I was trying to be sneaky and not worry anyone.  So, all good in that area.  

On Wednesday, I also broke up with my lymphademaologist (which isn't what she is, but that's what I call her).  It was a good breakup because we believed I was at the right spot for treatment.  I might have issues, but I know how to manage it and if super terrible, I can just get an appointment with her.  Radiation really mats scar tissue and well we all know I have a pretty significant scar across my boob as well as where they took the lymph nodes out.  Working out helps keeping the pain and swelling down so I will just keep moving along that route.  

I have been wavering on whether to continue to take this pill for the next 5-10 years or go off it and hope for the best.  I'm kinda sick of the side effects and only about 10 months into it.  I have an appointment coming up and we will see.  My hair isn't growing in fast enough for my liking, but also one of the side effects is hair loss.  UGH.  

I have appointment coming up on April 4th for a chest xray.  I still get winded super easily, so we want to see if there is scarring either from radiation or that wonder respiratory infection I had.  Let's just hope I'm out of shape.  

I think the most uplifting news is that hoping in the next couple of weeks, I will be returning to full duty.  I have been back to work full time since about November but not wearing my extra 27 pounds of vest and gun belt.  I had to pass a medical and complete some training before getting the go ahead.  I have two more things to accomplish before returning.  I gotta say I'm looking forward to returning but not looking forward to putting on the 27 extra pounds.  

That's it for now.  Until next time....

Casting for Recovery

This past weekend I attended Casting for Recovery in Redstone, Colorado.  And we stayed in the Redstone Inn.  While I was going through treatment, I kept seeing these flyers around the cancer center as well as my physical therapist office.  I looked into the flyer and figured why not apply.  The entire weekend would be free except for travel there and I would learn something new.  The only thing my Type A personality was fearing was the kumbaya that would most likely take place as well.  So, I applied, but never heard anything, which they said you would no matter what.  I ended up emailing them and was notified I was accepted.  I've been pretty stoked about it for months now.   

After some emails, some phone calls, and texts, Friday morning I drove to Durango to meet up with Elvi and Brenda to carpool up to Redstone, Colorado. Can you guess what we talked about?  Yes, our cancer journeys.  We stopped in Montrose for some lunch and then again because of an accident.  We finally made it to the Redstone Inn.

We were greeted by Casting staff, checked into our rooms (Elvi was my roommate), looked through our swag bags on our beds, and then back upstairs to make sure our waders and boots fit.  Snacks and beverages were provided, which became a joke all weekend because it was listed on the itinerary.  We then met in our first kumbaya circle, introduced ourselves to the group, met staff, and got the run-down of the weekend.  We were introduced to the laminated fish that were hidden throughout the hotel and the individuals with the most would win prizes.  The weekend was going to be jam packed!  

Saturday morning started with rain and then with optional chair yoga, which I opted in for.  I really should do yoga more.  After breakfast, classroom instruction of the rod/reel, equipment, and knot tying instruction. Due to the rain, the schedule was pivoted quite a bit, but no worries as we all just flowed long.  We had a session on particular bugs of the rivers and then went to the river and collected bugs.  Once we got them back to the classroom, we got to look at them under microscopes.  The rain finally let up, and we were able to go out to the grass and practice casting.  We had some free time to walk around the small town of Redstone and a group of us did just that.  I of course also took a nap.  After dinner, we had another kumbaya session where we got to pick a fly that reflected our cancer journey.  

I honestly don't know why I picked it.  I was one of the last to pick mine and this one just looked unique to me.  I'm not really sure it reflected my journey and honestly, there wasn't a shitshow fly so I went with this one.  

Sunday morning, I was awakened by loud rain, a bright lightning strike, and thunderous thunder.  This did not look good for fishing.  We went upstairs so Elvi could get some coffee and were informed by our fearless leader Kara that the road coming from I-70 was closed.  The majority of our goodlooking guides were coming from that location.  No worries, as we would just pivot again.  Our streamside celebration scheduled for 7:30 was conducted on the second story balcony with the readings of some poems and collecting of dark and light rocks.  My rocks will go on my attempt at being crafty plaque I have hanging in the garage.  

Some guides had arrived from the southern route and so we split into two groups.  One group went with some guides to a pond down the road.  The rest of us just hung out, ate snacks and beverages, and talked, and I was peer pressured into putting glitter on my face.  Around 1030 a stream of vehicles with rod/reel racks on their vehicles started driving into the parking lot.  The road had opened and waiting on the other side had been our guides.  The second group quickly got into our waders, met our guides (mine was Ray), and headed out.  Ray asked if I wanted to go to the pond or the river and I quickly chose the river.  I've fished plenty of ponds before.  And although I didn't catch any fish, I did catch three timber trout (otherwise known as sticks).  

 

I haven't mentioned it yet, but the food was unbelievable.  Today, the guides joined us for lunch.  After lunch, we had a little graduation where we received our 'diploma', a small box of flies, and a sticker as well as talking about our experience.  And our guides talked as well.  It was a great celebration where I might have shed some tears.  

We of course ended with another kumbaya session.  Then we said our goodbyes, some of us caravaned to Montrose, and my carpool group arrived back in Durango around 8pm.  I then had another hour drive to Cortez, which gave me time to reflect on my weekend.  

The program, Casting for Recovery, is made possible from grants, fundraising, and donations.  The entire weekend except my lunch on Friday, a chai, and $13 worth of gas was completely free.  So, you know damn well, for my birthday I'll be asking for donations for this program.  The guides, the wellness team, the coordinator, etc. all volunteer their time for this program.  And they all do an amazing job.  

If you truly read my blog, you know that my July 15th post, I was pretty depressed and still in a lot of pain.  Over the weekend, I realized I am not alone in this battle.  Hell, my shitshow really wasn't that bad compared to others, especially the individual who will do chemo the rest of her life.  Now that lady is brave beyond words in my eyes.  (Side note: she won the major prize of a new rod/real.  Another lady and I gave her our fish we found.  She truly deserved it).  Sometime during this weekend something changed for me.  I am not sure when the exact moment was or what it was that flipped the switch, but I have a new outlook on my new normal.  

I am lighter, happier, and my smile has returned to my face.  

Now I just need to find me a rod/reel, waders, and whatever else goes into fly fishing.  

Until next time.  

Roughly 2 months out of treatment

I've started and deleted this a couple times now.  Unsure how to put into words the feelings I have swirling around me at the moment.  Someone just posted on reddit in the breast cancer subgroup "Answers to How are You".  I responded with "I'm living the dream, but most of the time I lie".  Yep, when people ask how I am doing, I rarely give the honest answer.  

I've never understood depression in people.  How it takes your wants and wills away.  How is sucks the life out of the very existence you fought so hard to keep. But here I am pretty damn depressed.  I have no motivation to do much--reading isn't enjoyable anymore, getting out of bed is a struggle, exercising, eating, etc.  

I am still having a lot of pain in my arm, chest, armpit, and boob.  I'm now seeing a physical therapist for lymphedema.  I get lymph node massages.  Who knew that was a thing.  I've been given some stretches and I've been doing them.  In the past, I would do the exercises for a day or two and give up.  But I will say doing stretches really helps.  I always say I'll get up and do yoga in the morning, but that never happens.  Zero motivation.  

I find it interesting that back in the December 5th post, I also informed you I was lying.  I also said that cancer was not going stop me from living, but honestly after all the treatments, setbacks, and everything else, it honestly has kind of stopped me.  I just walk through the day in a blah mood and can't wait until 3pm when I can lay down and take a nap.  

I am still so exhausted all the time.  And still in pain.  And for the next 5-10 years I'll be taking some kind of pill.  I rarely took a Tylenol if I had a headache, now I have a pill container with AM/PM slots.  I feel 100 years old.  

But I will keep trudging a long because that is what I am expected to do.  The cancer is gone; you're back to normal.  There will never been a normal for me again, I fear.  

Until next time.... 

7 months in…

I found out I had cancer 7 months ago.  A notification popped up across my phone saying I had a new result in my portal. It was from my second mammogram and biopsy.  The first thing I saw Invasive Ductal Carcinoma.  And I knew the shoe had dropped.  I let Murray and my girlfriends know.  I made one phone call that night and through tears I told my dad that I had breast cancer.  Then I sent a text to my siblings and nieces and nephews.  And plans were made, appointments discussed, etc.    

When they call it a battle, I truly understand these days.  I mean it has definitely been a battle.  Surgery went fine, but I became addicted to apple juice because I think it is the only juice that hospitals purchase.  Then came the infection where 120 ml of blood was drained from my boob.  Our bodies hold 5,000 ml and granted that is only 2.4% (the 120 ml), but still it was enough.  Then came the hematoma that landed me in a Vegas hospital ruining our trip to see our friends.  After a mad rush back to Durango and the most disgusting smell emitting from my boob, a wound vac was attached.  And of course, since it is me, it was not without issue.  The only good thing to come out of the wound vac was that I did not have to go through the red devil chemo.  

Chemo was the worst it would seem by my posts and how everyone was saying "OMG you have it so rough" while the entire time I was feeling guilty I had it so easy compared to my new online friend scubagirl from reddit.  She got the red devil and geezus water even tasted like shit.  I would feel guilty as I was having steak and potatoes while she was struggling to get down a banana that was just going to go right through her.  

Chemo let me down in the sense that it was my weight loss program for the year, but I am super glad I wasn't puking and shitting constantly like in the movie Dying Young.  I just remember Campbell Scott puking constantly.  I remember nothing else of the movie.  But luckily medicine has progressed thanks to science.  Of course it might digress in the coming years.  

Then the respiratory infection sidelined my last chemo and pushed things back a bit.  But thankfully, radiation started a week early.  Today, I finish 12 of 19 sessions.  They are fairly quick.  Roughly about 10 minutes.  I usually either do some mediative breathing (twice I've counted my breaths reaching 40 and 53 respectively) or just mediate and am about the fall asleep when they say you can drop your arms.  I am getting sick of going every single day, but I am almost finished.  I've gotten my left arm into the correct position since the first two sessions when I mediated the pain away.  So far side effects have been pretty minimal with fatigue being the worst.  

Below are two photos of the machine as well as the position I am in.  I asked the technician if the wall separating us was 2 feet thick much like the door.  She said that the entire room is surrounded in lead including the ceiling.  That makes me feel better for them.  

 

Until next time...

Radiation arrival

On Monday, radiation called saying they could start this week.  Initially, they wanted to start on Tuesday, but I was in Utah and couldn’t make it. We decided on Wednesday, which is today. If all goes according to plan, we should be done May 12th  

The first several sessions are all over the place as for time. Today was at 3:15 and tomorrow 10:15 and on and on. April 24th, I’ll have a 10:15 standing appointment until May 12th. Wednesday’s appointments will be a little longer as I will meet with the doctor. 

Today’s appointment was pretty simple.  Changed into the half robe and was escorted down the hall. 

First, Tarah showed me the room where they would be monitoring me. There seemed to be a lot of technical things like camera monitors and monitors with lots of numbers and words. 

Second,  I was led into the radiation room. The door they close is about two feet thick. From the mapping appointment, they already had the room setup with the platform. The machine was huge behind me and there was another portion above me.  

I laid on the table and raised my arms above my head grasping the handles. I didn’t quite get left arm in right position and hurt for the next 15 minutes. Then a bright red light came on and they asked if it was too bright.  Why yes!  So I got a lavender scented eye mask. Mine that I will get every time I go and take home when done. The mask scent almost made me fall asleep  

Three people discussed what was going to happen next. Since this was the first time, there was some additional imaging that needed to get the system setup so when I come back tomorrow it’s just a push of a button once I’m on the table. 

During the imaging, there was a lot of noise and the table moving around.  The machine over my head moved as well. Someone told me that I would have to hold my breath, much like a mammogram, but I didn’t.  I was doing some deep breathing and trying to push away the pain in my left arm when all of sudden there was someone in the room saying it was over.  I moved my left arm and it dropped into where it was supposed to be. I’ll do better tomorrow. 

I lubed up afterwards as suggested. Once we got home, Murray put lotion on my back, collarbone, and neck. 

The major side effect is reddening of the skin much like a sunburn. And of course there are rare ones so you know me 🙋‍♀️. 

But I feel tomorrow should be a breeze. 

Until next time…

Onto radiation I go

I feel like it’s been forever since I gave an update, but honestly there hasn’t been a ton happening since March 30th update. 

I have developed some food aversions.  Chicken and pork are top contenders of now.  The sight and smell of chicken gags me to no end.  I couldn’t make it past the first pork rib.  Ben and Jerry are still doing well in my wheelhouse though as are heath blizzards.  Cherry Garcia and Mint Cookies are my go to B&Jerry’s. 

April 8th I had labs, radiation mapping, and an oncology appointment. Labs all look good and no cause for concern.  We will continue labs every three months. Oncology discussed what’s next.  I’ll be taking an estrogen blocker for 5-10 years. All depends on how I tolerate and scans and labs and blah blah blah. Oncology suggested taking leave for all of radiation. I probably won’t. 

The radiation mapping took all of 10 minutes. That was the appointment start to finish. The longest part was trying to figure out which platform to use. And the only pain was in my neck where the fing port is threaded through. The hope is that the mapping will be finished sooner than later and we start next week.  If not we hope to start on the 21st as this would end on May 15th with the 19 sessions.  More on why we want this below.

On April 9th, we returned to Durango to have my port removed.  There were two reasons I wanted it out.  1. It has bothered me from the beginning. And in the last week the pain has gotten worse especially with this cough that won’t go away from the respiratory infection. I sneezed the other night and screamed so loud I was sure the campground 2 miles away heard me. 2. We hope it is healed for our raft trip on May 19th. If nothing goes to plan, Murray is still required to go!

I was super nervous for the port removal. ASI stated in the Facebook post “I was asleep for insertion but awake for taking it out”. WTF!  My neighbor suggested putting on the lidocaine an hour, 45 minutes, and 30 minutes prior. I did all that and then the doc jabbed me with more.  For the most part it was fine, but you know me I like to ramp it up a bit. Sam, our regular nurse, said she wasn’t going to be in for the procedure. I poured and she ended up coming in for the first part. She gave me her hand while I got the lidocaine shot so I could squeeze it and always reminded me to breathe. She was there to place the grounding device on my leg while the doc cauterized the bleeder. Then she left and Jesse took over holding my hand, rubbing my arm and shoulder, and again reminding me to breathe.  Once the doc pulled out the port, Jesse held pressure on my jugular for 5 minutes since that’s where the tubing of the port came out of. The doc assured me I wasn’t bleeding internally.  Then she sewed me up while Murray watched. I said he was learning in case he had to do it on the river. He said no way. But you know never say never. 

And here we are today. We are back at the park. I am a little sore at the incision site but otherwise fine. I made bang bang shrimp for dinner over rice and Murray said it was a keeper (and can it be made on the river).

Until next time…

Ladeda da da

March 30th - 3:00am - non sleep mode

Well since I can’t sleep, I’m reeled out, and can’t pass the Toon Blast level, I might as write. As we know I passed through chemo on March 25th. But I did a little cheating to get there. 

In order for my chemo to go through, my oxygen levels had to be above 90.  I had been doing deep breathing techniques (in through the nose out the mouth) and using a spirometer to try to improve my breathing during the week. 

We left Cortez for the hour drive to Durango and I wore the oxygen even though I had not been wearing it during the prior days and only to sleep. Then I had Murray drop me at the door so I wouldn’t expend much energy or breath.  We got back to the room. The nurse put the pulse ox on and I was satting at 89. As she was putting on the BP cuff I did a quick 2 deep breaths and brought it up to 93. She recorded 92.  Woohoo I’m getting chemo. You don’t hear that often. 

I unfortunately did not get my normal cubby hole and the seating otherwise sucks for your caregiver to hang, but it was fine. Murray read his book and I did postcrossing. I also tried not to look at the person across from me because he looked miserable and about to puke. And boom chemo was over. No big fan fare. No ringing of a bell.  Just see you and out the door we went.  

I stayed on oxygen for two more days and honestly only at night.  I did short midafternoon walks and walks with the boys if I was feeling up to it. We turned in the oxygen and I got back to being a person - grocery store, hardware store, etc.  

I’m back at the park. I worked yesterday which was fine and keeps me from going insane of boredom. I am going to take it easy today and watch some basketball. My worst symptom right now is leg pain and non-sleep. A nap will be in order today. 

My next appointment is April 8th where they will map the radiation plan.  A couple weeks after that the radiation will be lasered into my body.  What will it hold?

Since I can’t sleep, it’s time to make the donuts (aka: bagels). 

Until next time…

PS: I’ve been sleeping with the window open and it is just marvelous as it helps with the night sweats thanks to the medication of steroids. And the desert smell is beautiful.