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. 

Frustration all Around

 Last Sunday, March 9th, Murray and I came to Cortez from the park for a quick overnight so that I could attend a dentist appointment to see if I chipped my tooth or just a large piece of plaque came off.  Around 3pm on Sunday, I was not feeling well and checked my temperature.  Depending on where I tested it (forehead, ears), I got a different temperature.  Forehead 100.6 left ear 102, right ear 104.3.  I took a Tylenol, but the paperwork and doctors had said anything 100.6 and above was to the ER or doctor call.  It was Sunday and our oncology doesn't work.  Doesn't even have an on-call.  So, to the ER we went.  We got right in, but they wouldn't let Murray back for a bit.  I think it was because of the questions they asked...do you feel safe at home, etc.  

First, they hooked me up to everything.  My temperature was 99.9 by this point, probably because of the Tylenol.  They drew blood via the port.  They did a chest xray, which the doctor said looked like something was showing in the lower lobe.  They did a CT scan, but prior to doing that they had to poke me again...NOT IN THE PORT!  The nurse tried the left arm in the bend of the arm and blew the vein.  So, then she tried the right arm, which I'm pretty sure I'm not allowed to have anything done in there, but she got that one.  I returned from that and laid in bed for quite a while before they finally brought Murray back.  The doctor said I had bronchitis, but the discharge papers had pneumonia.  With my oxygen sating at 74 on oxygen, they wanted to keep me, but I firmly said no.  I was sent home with an oxygen concentrator and a bottle of oxygen and a bunch of supplies.  I've been on O2 ever since.  And I went back to the ER on Thursday, 13th, which was better.

On Monday, we made a quick trip the Durango for the dentist.  I actually wasn't on O2 but survived.  Although I had spent 30 minutes on the phone with the receptionist trying to set up the appointment last week, I wasn't on their schedule.  Luckily, they were able to get me in and it was just plaque.  The dentist was surprised doctors had said not to floss.  Hey just going by the paperwork.  And he wanted me to come in for an appointment for a cleaning.  Um, I'll wait until this shitshow is over.  

By the time we returned home, and I walked up the stairs, I needed O2.  Again, I've primarily been on it constantly except for a few times when I took it off to see if I was sating any better without it.  I wasn't.  

Today, March 18th, we went to Durango for chemo follow up, chemo, radiation follow up, stems.  The doctor (a sub), who was also too touchy, said it was a no go with the chemo, and I could come back next week.  Devastation is probably a better word than Frustration.  This was supposed to be my last.  FUCK.  And then infusion came in and it was a battled to try to find a time slot, but she finally was able to.  Since chemo was cancelled, we had about 3 hours to kill before radiation.  

We headed off to Frida's for the best Mexican food around.  After lunch, we still had plenty of time left so Murray took Pabst for a walk along the river walk while I sat in the car and moped.  Plus, it was too cold for me.  Any guesses where we stopped next.  If you guessed the 4CRS (aka: river shop), you'd be correct.  But I did get to pet the nicest husky who came right up and said sorry you are sick.  Then the second cuddle I got a nose lick.  

We headed off to radiation appointment and met with the doctor.  He is quirky, but I really like him.  After a lengthy discussion, he decided we would do the stem on April 8th.  He discussed a lot of rare things that could happen during chemo.  ✋was my answer to those.  Considering every other hurdle I've had to jump.  

And then we drove home in a snowstorm with crappy roads and I'm sure my blood pressure was through the roof.  Now I'm home on O2 again and writing this frustrating blog.

Until next time.  

It's a chemo week

On Monday, February 24th, I will head over to the local hospital to get stabbed for some lab work.  Hopefully, they are skilled enough to use the port because my arm isn't looking pretty.  And if they have to use my arm, they are absolutely not allowed to use tape of any kind.  

Tuesday, we will head to Durango for a follow up with the oncologist and then 3-hour infusion of poison.  I better get my postcrossing address and cards ready and then pack my bag.  Honestly, I've only used stuff from my bag once.  I think I had some pecans.  But you never know, so I'm prepared.  Extra snacks, ginger ale, extra pair of clothes, puke bags, the essentials.  

How was the week after Infusion 2?  Well, I gave you some symptoms that I had in that first couple of days after chemo.  But then the neuropathy and meth sores kicked in.  The neuropathy was probably the worst as it is extremely painful.  I mean I could barely play Toon Blast. Also, doing dishes is out of the question.  Murray said I would probably milk that for eternity.  And now it is peeling in all the locations of where I had redness.  Luckily the meth sores did not itch or anything else.  They are just there.

Surprisingly, I reacted to where the IV was placed during the port surgery.  Most likely from the tape even though I had a bracelet saying TAPE/GLUE ALLERGY.  Luckily, it has not itched either but
is a blemish I hope goes away.  

Probably my biggest gripe is that I can't get warm.  At the Park House, I was bundled up in long johns, shirt, fleece, and puffy, and had the heat around 72 degrees.  One of my employees stopped by and I was bundled up in my SAR puffy because it is just the right amount.  He asked why I was so bundled, and I said I was freezing.  He then took off his glove and checked my forehead for a fever.  Nope, I don't have one...I check my temp about 10 times a day.  Then a maintenance employee came to fix our toilet and asked if our furnace was working.  He thought since I was bundled up that it was not.  

But of course, during the night, I am so fricking hot that I throw all the covers off of me.  Murray woke up once and wondered why he had so many blankets on him.  And then after throwing them off, about 10 minutes later I am freezing.  This shit is so fun.  

I am looking so forward to this next round and seeing what new and exciting side effects I will have to endure.  Positive note:  This is 3 of 4!

Until next time....