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....

The days before and after chemo #2

The time is 4:22am and since I can't sleep and am at the park solo, instead of doom scrolling through fake news, I got up and cleaned the house.  I've been up since 1230, 1:30, 2:30 and finally got out of bed at 3.  Side note:  Once I was staying with my brother and sister-in-law and about 2am I am awakened by the vacuum going.  I'm like WTF are you doing Babette? Oh well, my kids are used to me cleaning at this time so I didn't think it would bother you.  So, I did a little Babette cleaning this morning.  

Murray needed a much-needed break and go see his best friend, Jon and his wife, Michele, in Idaho so Melissa came down to take me to appointments and babysit me.  Murray left on Saturday, February 1st, and my sister Lisa and b-i-l, Jim arrived for an overnight on their way to Durango.  Thankfully, they got there early so that Lisa could tackle the puzzle I've been working on for months.  When Melissa arrived, she took one look and said nope, but she did put some pieces in.  

My port surgery was scheduled for February 3 at 9:30am.  I figured we would just get up Monday morning and jettison over there.  WRONG.  Friday, they called and said I needed to be at the hospital at 7:00am so we headed over to Durango on Sunday night as soon as Melissa rolled into town.  My good person discount didn’t work, but the hotel is great overall so no complaints.  We went to dinner at Carvers and then Maria’s bookstore. 

My goal (really, I don’t make goals because I feel they are steppingstones to failure) was not to purchase a book all year until I read through all the other books I already own.  We went to Maria’s to get some funky postcards that I use for postcrossing.com.  And sure, as shit, I bought a book.  But it was by local writers, so I felt it was justified.

The people above us in the hotel were so fricking loud.  We determined they had to have a kid or two.  And every 10 minutes it sounded like they were rearranging furniture.  But finally, they went to sleep as we did.  Of course, Monday night at 2:30am, someone fell out of the bed, then more sliding of furniture, but we could hear a baby crying.  

Surgery day: I’m sure I got up and some point and played games in the middle of the night as well.  I got up at 5:15am, walked Pabst (there is a dog park entrance right at the hotel), fed him, showered, and got ready.  

We were at the hospital before 7:00 and I think we waited until about 8-8:15 to finally go back and be prepped.  I was supposed to have a blood draw after the surgery, but luckily the doctor said they would just do it when they stuck me with the IV.  During surgeries, I now have a bunch of bracelets on my arms—LIMB (can’t do BP or IV on right arm anymore forever), ALLERGY (glue and probably adhesive).  From the prep area, it is a maze to get to surgery.  It is so weird to me that it is not right next door, but five minutes later I am finally wheeled into the room, moved to the operating table, and told to breathe in this oxygen only to wake up later in another room struggling to breathe.  But I have to admit I realize why Michael Jackson loved the ‘MJ Drug’ because I feel even if only out for 30 minutes, I get the best sleep. 

We went back to the hotel for a little down time.  We both took a nap.  I couldn’t sleep on my back because I would start snoring and wake myself up.  I couldn’t sleep on my left side because it would pull on the incisions.  But luckily and surprisingly, I was able to sleep on my right side.  Melissa decided when we woke up that we should take a trip to Home Depot for her bathroom project.  I was pretty still out of it, and she had to direct me to walk a few times.  She would not let me take the driving cart, which if you remember from a previous post is probably best because lots more to run into in Home Depot.  Afterwards, we took Pabst for a walk at the dog park.  With Jim and Lisa in town, we met for dinner at the hotel.  Also joining us, were our family friend Dave, who lives in Durango, and friend CJ, who met up for the ski trip.  Melissa and I got there early and had the very large pretzel.

February 4^th was chemo day.  I always meet with the doctor first and go over things and then go sit for the infusion for three hours.  As we know, I had a rough go last chemo infusion.  As I might have mentioned, I do this postcrossing.com thing and a gentleman who had sent me a postcard, also sent me a letter with an origami crane.  But he had suggested a symptom tracker, so I went ahead and made one.  It was really helpful when discussing how long I had leg pain, nausea, tooth pain.  And from all the information, we came up with a plan – longer on the steroid, take heartburn meds daily, etc.  More on later on this. 

During pre-op surgery, the surgeon had discussed about leaving the needle in the port, but said she didn’t really like to do that as it is difficult to sleep and blah blah.  Upon arrival in infusion center, I picked out the corner office (lots of room and separated from the rest of the group).  The nurse of the day took one look at the port and said, “they didn’t leave the needle in it?”.  FUCK.  But thankfully, she immediately said, “I’m going to go get someone to help me”.  The next nurse arrived and jammed the needle in and didn’t hit the port.  It hurt like hell, and I was grimacing pretty bad.  But instead of pulling it completely out and trying and trying again, she manipulated it several times and got it in.  The whole process was pretty painful, mostly because I just have tender skin and pain tolerance is not the best.  She then wiped her eyes, and Melissa told me the nurse was crying because she felt she was hurting me so bad. ☹  And the pain was worth it because I could use both hands and it wasn’t painful to move around, etc.  And I got some postcrossing completed.  Of course, the corner nook wasn’t totally isolated as we had to listen to two people discuss rodents for 45 minutes.  Thankfully, I now have my better noise cancelling headphones.

Melissa was great in going to the car to deal with Pabst and take him on his walks around the hospital.  They have a nice walking path around the entire hospital.  And during an earlier walk, we found several places to eat so she got lunch on the walk.  I find I really don't talk much to my companion of the day.  

And now we are to the days after infusion.  On February 5^th, the extra shot entered my body.  If you remember, it was two days that the HOLY FUCKING HELL kicked in throughout my legs.  And it was beyond excruciating.  Well, this time, it was three days later, and it has been super mild.  I mean I have not screamed, yelled FUCK, felt like giving up, or didn’t think I could walk.  SYMPTOM TRACKER for the win!  I have had very mild symptoms honestly.  The first tracker had like 15 symptoms.   This infusion has 5 – nausea (2 days), leg pain (3 days so far), sleepless (on and off), general fatigue, and tooth pain (5).  I eat a lot of popsicles.  The worst pain actually is from the port incision on my neck.

I have returned to the park until the next infusion time.  I've become one of those people with a basket full of drugs that I transport between houses.  When I first started following Cal's Angels, I was always amazed by this photo, and mine isn't as extensive, but it has grown each infusion it seems. 

Until next time...

Chemo sucks ass!

 

Gregory the Guardian

 

Tuesday, January 14, 2025:

I received a chemo infusion today.  Not too bad except for the IV of course hurting like a mother fricker.  No issues.  I am getting a cocktail of Docetaxel and Cyclophosphamide and then 24 hours later a shot of Pegfilgrastim.  It was a long day just because there was so much that first day.  Meeting with doctor, education specialist, and then the infusion.  The night progressed and no such issues.  I did have mild nausea, but at the first sign, I took a pill, and it went away.  

Wednesday, January 15, 2025:

Tonight, the neuroblaster (I'm not sure if this is what it’s called) went off.   Primarily, it injected me with the Pegfilgrastim.  And as we know, the adhesive reacted with my tender skin.  I think the mark is gone.  I've quit looking at myself.  The little machine is pretty cool because it injects me without having to go into the doctor again.  This takes place over 45 minutes.  Again, some nausea but the pill pushed it away.  And I walked because I knew a walk is important to push this poison out.  

Thursday, January 16, 2025:

HOLY FUCKING SHIT HELL TO FUCK.  The leg pain started today.  This is because of that little shot in the stomach stimulating the white blood cells to get their ass in gear and start working again.  I took a Tylenol but did not help.  I tried an Epson bath and that helped for a brief time but then came flying back with the pain.  I've started mumbling to myself a lot.  Luckily, so far, I haven't answered back.  I waded through, but barely.  And as much pain as I was in, I walked.  

Friday, January 17, 2025: 

I called the oncology office and asked if I could take some pain pills.  I have learned from my brother-in-law Scott, to always keep pain meds if you can.  From the surgeries, I have a supply of oxy and hydrocodone.  They said I could take them.  They worked a little.  The Epson baths stopped working.  Sorry, I can't do the cold plunge.  More mumblings, screaming, crying, but still haven't answered myself.   I continued to walk and tried to keep moving.  I haven't had a decent night sleep since probably Wednesday.  I'll fall asleep, feel like I've been asleep hours, and then roll over to see the clock moved 10 minutes.  FUCK.

Saturday, January 18, 2025:

The pain meds last about 2 hours and I have to take them 6 hours apart.  So, for four hours I am in excruciating pain.  I try to take one right before bed so that I can sleep through the night, but then my dreams are hectic and exhausting.  I usually move to the recovery couch around 3am.  And then nap, which probably doesn't help my nighttime sleep.  By the way, I'm rocking my fluid intake to the tune of about 100 ounces a day.  Of course, this just makes me pee constantly.  

Sunday, January 19, 2025:

Thanks to peeing constantly, I have developed swamp ass.  And the treatment is to put some moist ointment on it, which makes zero sense to me.  May be too much information, but I've put a washcloth between my butt cheeks.  The leg pain is still here.  My mumblings are becoming less, but still occasionally reared back up.  I've developed some weird blister on my thumb.  A toenail is breaking but not supposed to trim them.  I did not walk except around the house.  It was too fing cold outside.

Monday, January 20, 2025:

Oh, awesome a new pain!  I now have pain in my upper back.  I also have some mild rash or skin irritation on my back.  Primarily or most likely because I'm constantly laying down.  The leg pain is a little less and I did get out with the boys for a morning walk even if it was super-duper cold.  Today's goal is not to nap or at least nap as for long.  

My positive attitude is not so much positive anymore.  I completely understand why people give up in this fight.  Primarily, it feels like they are shooting poison into you to try to win a battle.  And there are days that is it very difficult to put one foot in front of other.  

I guess the only positive I have from this week is that my biggest concern of puking (like the movie Dying Young) did not happen.  Sure, I was nausea at times, but the pills to combat it worked great.  

February 3, 2025, I will get a port placed.  I know this seems an overkill especially considering my last surgery, but it will be better in the long run because I won't have to get an IV.  February 4th will be my next chemo infusion. 

Until next time....

 

Chemo week

Tuesday, January 14th was my first day of chemo. It was a long day as first we had to meet with the doctor, technically the PA, then the educator, and then chemo. The first two appointments took about 20 minutes. The chemo was three hours. But it went fairly fast I thought.  

I’m in a room with about 12 stations. Some people are there as the same time, others in and out.  I’m a snoop so I was mostly watching people.  And staking out the best place for next visit.  

I got this awesome hoodie from BeWell which has zippers to access arms and ports. Unfortunately, my line was stuck in my hand so I didn’t get to use it as I wanted. But it would make a great gift for someone doing chemo. It is super warm. So warm that I didn’t need any blankets. 

Which brings me to my hand which is aching so bad today. On the way home, I emailed the surgeon asking for a port.  So on February 3rd I’ll be getting that placed. Since my chemo is the next day, we will stay over in Durango. 

For the most part besides the IV, yesterday went pretty smoothly. Today, I worked a full day and got in two walks with Murray and Pabst. I started getting tired around 5, but still functioned and didn’t fall asleep watching the movie. We’ve been watching Elona Holmes on Netflix.  

I did feel a little nausea around 6pm so I immediately took one of the nausea pills and continued on my water regiment.  Logged 94 oz of liquid today, 64 of it being straight water.  

And then it came time to take this off.  This little ditty was placed yesterday and would inject me 27 hours later with something to invigorate my white blood cells.  It didn’t hurt going on and was not too bothersome. 

But taking it off was a whole other story because of the fing adhesive.  I ended up having to lay on the bed and having Murray finish removing.  On a side note, I don’t know how people do this shit alone. Well sure enough it left a mark. 

And to think I get another one in 3 weeks. Yippie. Little birdies have told me that this little sucker will start making me feel bad, but who knows. 

My positive thinking is that everything happened in the first few months that these months are going to be a breeze.  Hopefully I am correct. 

Until next time….

Here's to 2025

 

December was definitely a difficult month for me with this wound vac malfunctioning constantly and just overall frustration.  One of the biggest frustrations was that the insurance company denied the wound vac.  Said it was not medical necessary.  As my sister said "how ridiculous that that isn’t automatically covered.  Like someone would choose to have a wound vac.”   

In the midst of arguing with the insurance company, I am now being provided with case management.  The two individuals I talked to at the insurance company were extremely helpful and sincere about things. 

We went to the wound clinic yesterday and turned the wound vac in.  They also submitted more information to BCBS to indicate that the wound vac was necessary.  I thought just sending them a photo of the open wound would have been sufficient enough. 

Anyway, the wound nurse said that it is looking great and healing nicely.  She laid some collagen in it and slapped a large bandaid over it.   We will change it every 3 days.  We will meet with the wound nurse again on January 8^th and hopefully we will done with her because it will be 100% healed.  I am still having mild reactions to adhesives.  UGH.

On January 9^th, we will meet with the surgeon.  Primarily, to check on the wound and hopefully give the OK that it is healed.  They will not put in a port until the wound is healed.  And I’m wondering if I will get a port at all considering how infections love my body. 

Someone asked me if I have any plans for 2025.  My response: wound healing, chemo, puking, mouth sores, hair loss, weight loss, radiation.  And in there will be fun, excitement, adventures, and growth.  I have always said that “goals are steppingstones to failure” so I don’t ever set them. 

January 14^th (Happy birthday Michelle and Michael) will be my first day of chemo.  For the most part, I know what to expect during the sessions, but I also know that each person is different in how they react.  Hopefully, all the drugs I must take before, during, and after will lessen the side effects, but who knows. The oncologist said that Day 5 will be the worse after the infusion.  But also said that no matter how terrible I feel I must force myself to get up and move around.  I must walk at least 10 minutes a day.  And water, water, water.  I have been doing pretty well with my intake but it is a struggle still.  Only time will tell about these sessions. 

I turn 52 this coming year.  Matter of fact, on January 4^th I turn 52.  Every year, I always ask for donations to Cal’s Angels.  This year is no different, but this year it means so much more to me.  I am 51 and am struggling through this battle.  I can’t imagine being a child having to battle this.  Please consider making a donation.  If you don’t want to go through facebook, you can go directly to Cal’s Angels page. 

Until next time….

Wound, chemo, radiation

I have come to realize that Bimbo and I relationship is about two days long and then the warning alarms go off.  Blockage alarm, low pressure, battery, etc.  And since this morning around 1am, about every hour it would alarm blockage or low pressure.  I got up and 'slept' on the couch.  I say 'slept' because really, I laid there, dozed, awoke by alarm, silenced it, dozed, and on and on until 6am.  When I finally gave up and got up.  

We had already planned on getting up at 6:30am because we had an 8:45am appointment in Durango with the oncologist.  We were truly hoping that I would not have to go through chemo, but I've come to the realization that everything that can go wrong will go wrong in this battle.  We had been waiting for the oncotype score to come back and it was 34.  Which of course is high.  She said the oncotype score is related to genes and well our family loves the cancer gene.  With an oncotype score of 34, I have a 22% chance of caner coming back somewhere in my body.  By doing a combination of chemo and radiation, that percentage drops to 4-6%.  I'll take losing my hair, puking, etc. over the 22%.  

We met with the oncologist and were given two options.  The red devil and the taxotere versions of chemo.  The red devil is just like it sounds – the devil.  The second one not as much shitiness and does not affect the heart, but still all the same side effects.  After realizing I was carrying a wound vac and looking at the wound, she decided that the taxotere would be a better option as to lessen the chance of another infection. 

There would be 4 sessions 3 weeks apart.  The chemo would take place before the radiation.  But none of this is going to take place until the wound is 100% healed. 

Also, she stated I would need to drink 2L of liquid a day.  I asked if vodka was an option.  She laughed and did not give me a disbelieved look.  But I was joking.  However, for those of you that truly know me, me having to drink 2L of water a day is going to be so difficult not to mention spending most of my day in the bathroom.  But it can be other stuff like Gatorade, juice, etc.  Just not alcohol or caffeine.  Guess I will start prepping for that now and work up to 2L. 

While at the hospital (all my doctors are at the hospital), we checked in with the surgeon to see if the wound vac bandage could be replaced.  They put in a referral to the wound care clinic in the hospital (we have been using the one in Cortez and they operate M-Thursday).  We went down there and after some talking, we realized they were not going to be able to fix it.  How a wound care clinic doesn’t have wound vac supplies is odd to me but so be it.  So, we drove home.

I disconnected the machine, took a shower, and Murray packed it.  The plan was to remove the machine on Sunday anyway, so we are just a few days earlier.  Now, I am packed with collagen and gauze.  Every three days, we will repack with collagen and gauze.  Monday, the 30^th, I’ll go back to the wound clinic. 

But for me the exciting part is that I can function somewhat as a normal human without having to lug around that machine.  And there is a good chance, I’m probably going to get a good night’s sleep this evening.    

And that is where we stand for now.  

Until next time….

Bimbo and I have a love hate relationship

If you did not get the Bimbo and Betty reference either you are too young or you don't know Bimbo and Betty Boop's relationship.  Honestly, I didn't know the relationship either, but since I named my boob Betty, I figured I'd check to see if she had a boyfriend, and it was Bimbo.  I did like Dani's suggestion of Mother Sucker though.  

The whole point of Bimbo, the wound vac, is to speed up recovery time.  With Bimbo, it would be 3-5 weeks and with packing it daily, the recovery time would be 4-6 weeks.  The wound is large, but thanks to Bimbo has gotten better.  

However, Bimbo and I broke up Friday night.  I have it on good notion that come Monday, we will get back together.  As of right now, Murray is packing the wound again.  

Thursday evening around 1am, Bimbo gave me a message of "LEAK ALARM".  The machine said it was low, so I wasn't too concerned about it.  At 4am, it wouldn't stop going off and I finally hollered to Murray.  We have been sleeping in separate rooms due to Bimbo's constant whirling.  Although Murray could fall asleep with the noise without an issue.  We put some tape around the edges as best we could, and the alarm went stopped going off.  Murray of course went back to sleep, and I laid awake until about 5 and finally went to sleep only to be awoken by my 7:30 pill alarm.  I did take a long nap Friday though.  

Friday evening, Bimbo would not shut up.  Leak alarm, low pressure alarm, battery low alarm, blockage alarm.  We gave up.  I cried a lot.  I showered finally as Murray set up the kitchen wound care clinic.  

After showering, some more crying as the dressing was removed as I have the most sensitive skin, Murray got back to work.  For now, we will do daily packing changes until Monday when I have an appointment at the wound clinic and get it all back together. 

The bonus is I don’t have to lug that machine around.  The downside is it increases the recovery time.  Such is life.  As I’ve told a few people, if anything will go wrong in this fight, it will happen to me.  Surly Sara pouring through there. 

Until next time….

Double Appointment Day

No graphic photos!  

I will start with how it went after the appointment last Wednesday up until today's double appointment.  Because I did not want Murray to have to go through having to pack my wound because he would feel like he was hurting me, we attempted to get Home Health to come.  FAILURE.  I've seen so many posts lately about our healthcare system verses other countries and being in the system now, I understand.  Anyway, I went to backup plan of having Matt come over to pack the wound, but Murray said he could do it.  He said that he had come to terms with it knowing that each time we changed it out, I was getting better.  Luckily for me in the two times prior that I had to changed, he had been watching and studying up.  

HE HAS BEEN AWESOME.  We have the routine down now.  He sets up the surgical room - aka kitchen - while I take a shower.  The primary reason for the shower is to wet the gauze so that it is easily removed.  Once done showering, I move into the surgical room and take my seat.  I turn my head to the left, he removes the gauze, drapes it over my arm, and throws it away.  He then packs the wound.  He allows me to hold the scissors until they are needed hoping I don't stab him, and he finishes up.  I usually cover it and lay on the couch for a bit before having to slap the bra back on.  It is like wearing a jockstrap for 24/7 for the men who can’t comprehend why women take off their bras immediately upon getting home after wearing it all day. 

After the appointment on Wednesday, I had some pretty hefty zingers (sharp stabbing pain that last for a couple of seconds).  Wednesday they were rapid firing and I asked Murray to get me a pain med.  I have not had pain meds since Wednesday so feeling pretty good about that.  However, I have had a couple zingers upon returning home.  Appointments wear and stress me out and probably bring on the zingers. 

Appointment #1 – Surgeon

We met with the surgeon today to check on progress.  Betty Boob is looking quite a bit better.  The end of bruising (yellow) is done for the overall, but around the wound is still pretty red.  Murray wanted her to assess whether he has been doing a proper job of packing.  She said that the packing looked good.  She covered my arm before removing it so to not drape it over my arm before the trash.  They then decided that she would watch as Murray packed the wound.  Um, does that mean I don’t need to pay her for her services? 

We also talked about a wound vac.  Primarily, a sponge inside the wound with a machine sucking it out.  We have an appointment at the Wound Clinic tomorrow to have the device inserted.  Not sure if device is the right word, but that’s what I am using.  That will need to be changed 3 times a week – Monday/Wednesday/Friday (Probably Tuesday for Christmas).  My biggest concern is that there is a sealant and well my body doesn’t like adhesive.  So, if that is an issue, we will return to the old fashion job of Murray packing my wound.  I sent a text to my sisters discussing all this.  I told Murray “Amy is googling wound vac right now”.  I was right.

With the packing of the wound, healing will take 4-6 weeks.  With the wound vac, it might be 3-5 weeks. 

Appointment #2 – Radiologist

No time to doddle as the appointments were back-to-back, but luckily a floor apart from each other.  We first met with Nicole, the nurse, and she went over a bunch of stuff.  Then the radiologist (?) came in and discussed a lot.  Murray took notes.  I sat there glazed but listening.  Primarily, the plan, ONCE THE WOUND IS HEALED, will be to have 19 sessions of radiation.  What does sessions mean…well primarily 19 days of driving an hour, getting radiated for 15-30 minutes, driving home an hour.  But first, after the wound is healed, I will have a scan to pinpoint where they want to send the laser beams.  One to two weeks after that, a plan will be in place, and I will start the radiation. 

Before you ask, I am still waiting to hear about whether chemo is needed. 

After the appointments, I needed a chai and Pabst said he needed a pup cup.  We then followed it up with a walk at the Durango Dog Park where it was apparent a lot of individuals have Monday’s off.  But Pabst was a wagging his tail and he didn’t get mounted so that was a good thing.

Until next time….

 

How you doin’?

You realize that I’ve lied to every one of you when you’ve asked that question.  What do you expect from a Type A personality.  We bottle and bottle until we crack.  I’m probably close to cracking.  I’ll be more honest with you.  I think I used up all my positivity in the first month. Now I’m Surly Sara.

It has been a tough go since Saturday especially since my trip was cut short.  I know lot of you thought I should have been staying home and laying on the couch, but if there is anything cancer is not going to do it’s stopping me from living.  I had this trip planned since probably June and a little cancer wasn’t going to stop me. Ok, well technically it did stop the trip, but you know what I’m saying.  

Mornings are best for me so we would activity in the morning, nap in the afternoon, and hang out with the Prathers in the afternoon.  I usually sat at the table doing the puzzle.   

Saturday morning we left Lone Pine for the 4 hour drive to Vegas.  Somewhere after Rhyolite, I thought I felt my boob seeping more than usual, but in checking I couldn’t see anything.  I figured it was just a false feeling again. 

After a smokey dinner, I came back to the room while Murray walked Pabst.  I took my shirt off and knew it was not good. I waited for Murray to get back before taking off the bandage and watching fluid drain down my body.  The ER was close. My former SCA Amanda had already provided information so I just typed into google maps and away we went.  I already had my go bag-charger, reading glasses, pen, chapstick, wallet, and oxy (which the hospital confiscated but gave back). 

They quickly got me into triage. The male doctor couldn’t find a female nurse to chaperone and I said who cares. Ultrasound, CT scan, blood draw, etc. Then there was a lot of waiting.  I finally sent Murray and Pabst back to the hotel. At 4am I was in a room and after being awoken at 7am by a surgeon, I was in the OR at 7:30am. 

The rest of the day was pretty uneventful. My night nurse let me sleep from 1130pm-530pm. Well I was already up when she came in. Then they came and repacked the wound. Murray said when they were unpacking it was like when a magician pulls the handkerchief out and it keeps coming.  We were finally discharged at 4pm and headed for Flagstaff. On Tuesday after some coffee with Della and her checking my temperature we headed home. The drive was long as Murray was emotionally and physically exhausted. We stopped a lot.  (Side note: his bro was in a serious accident after Thanksgiving). But we finally made it and I immediately went to the recovery couch. 

Which brings us to Wednesday, yesterday, since I’m writing this at 3:15am.  We went to my surgeon which is at the hospital.   Although I haven’t registered a fever, there were times my face was burning up.  And the smell emitting from the boob is enough to make me puke.  Murray smelled it and just thought it was the tape being sweaty.  Fucking tape.  I hate it!  I screamed when she pulled off the bandage.   

And when she removed the packed gauze I nearly puked - the combination of pain and smell almost had Murray’s shoes full of vomit.   I cried.  

She repacked it and said it had to be changed daily.  Hopefully we hear from Home Health tomorrow.  Although I know Murray can repack it, it will be difficult on him.  As I wince and cringe, he would feel he’s hurting me. So we asked for home health.  I do have a backup plan hopefully!  Let’s hope we don’t need to use it Melissa.

I’m on two antibiotics.  The side effects are awesome.  I’m guessing one is insomnia.  Delusions or weird dreams is another.  Before waking at 1:15am, I was playing one of my idiotic games, but in real life.  Ugh!

I have two appointments next week…one with my surgeon and one with oncology.  I’m guessing further treatment will be postponed until this clears up. The surgeon did a culture and consulted with infectious care team. So many make up this cancer team.

Until then I’ll be bouncing, ok may be slugging, between the Recovery Couch (its name now) and the table.  I WILL BE TAKING IT EASY!

Until next time…

 

Infection, infection go away

On November 12, when I had the first follow up appointment with the doctor, she was pretty certain that I had an infection.  So, I was placed on antibiotics.  And I dutifully took them 4 times a day.  That meant getting up at midnight to take one.  Every 6 hours.  I have become one of those individuals setting an alarm to take my medications.  

The pain stayed.  The swollen boob stayed.  The weight stayed.  I was getting absolutely no relief.  My boob was the size of a mini basketball and weighed like a 10-pound kettle ball.  I take it back when I said I wanted DDs.   

As said before there was a possibility of my incision opening and all the gunk inside spilling out.  Wednesday night I took off my 24/7 bra (I've stopped wearing it 24/7) and there were spots of blood on the fabric.  Oh, this cannot be good.  Murray checked and said it was not actively bleeding.  I went to bed.

Thursday morning, I awoke at my new 4:30 wake up time.  I attempt to go back to sleep, but it never works.  I came out to the kitchen as I do every morning, have my glass of emergC, play my games, let out Pabst, drink my chai.  I thought I was leaking, but I wasn't sure.  And I do this mostly in the dark as to not wake up Murray.  

My sister Amy texted to ask how I was doing and if it was still leaking.  I looked at my pj top and sure enough it was.  Murray had already gone to walk Pabst.  As I tried to clean off the dried blood it seemed to start bleeding again.  

I already had a scheduled follow up to the follow up but decided to head over to the hospital early just in case eruption happened.  I called them several times asking if I should just come to the office or ER, but wasn't getting an answer or call back.  Five minutes from the hospital I finally got through and they said, "come to the office, we will just put gauze on it".  

My initial appointment was at 9:30 and I believe we arrived at the hospital at 8:15. We were ushered into the room and given what I'll call a breast vest (scrub that opens to the front).  The nurse had another name for it.  And we waited.  The nurse came in several times to check on us, give me water, and do the vitals of course.  

I had been telling Murray all week that the doctor was going to want to put another needle in my boob and drain it.  I'm kinda done with needles in my boob.  

The doctor came in, poked and prodded my boob, and said, "I am going to drain it."  I don't know why I cringe when the doctor says, "get me a 16 gauge".  It always seems so large and scary.  

The doctor put absorbent pads all around me and started to pull off the glue.  I was imaging it breaking open and blood going everywhere, but luckily it didn't.  Then she numbed my boob.  The thing I love about my doctor is that she explains everything she is going to do.  When she was going to numb it, she said this is going to feel like when I put radiation in your body.  And in went the needle like a hornet was stinging me.  

The nurse was on the other day side holding my hand.  It wasn't that bad.  I guess I'm getting used to hornets stinging me.  But there was a moment when I must have tensed or something because they both asked what was wrong.  And I let out a long breath and said, "I realized I should be breathing".  

As much as I wanted to watch I kept my eyes shut as the doctor squeezed and squeezed.  Like if you cut an orange in half and try to squeeze all the juice out by your hand.  60 ml later the doctor unscrewed the syringe and asked the nurse for a second one.  Thankfully I am not blood queasy because she showed me the first one.   

About this time, I thought it would be important to take a photo of her extracting it.  Mostly because my friend Laura is afraid of needles, and I thought this would be a cool one to show her.  The doctor got out of the way, and after Murray figured out how to open the camera on the phone, snapped the photo.  I've cropped it some.  This is at the start of the second syringe.  And that is one of two incisions.  The other is under my armpit.  

Although there was some pain while she was squeezed the juice out, there was also absolute relief while she was doing it.  My boob was getting softer and less swollen.  Even Murray said he could tell that my discomfort was slowing draining from my body.  Our bodies hold about 10 cups of blood and I had 1/2 cup removed.  Down 1/2 a cup and still going strong. Haha. I know, I know it’s being replenished. 

After two syringes full of blood and gunk, I was lightly bandaged, a maxipad stuck in my bra and away we went.  

This morning, I awoke at my usual 4:30, got out of bed, and felt so much better.  I still have some pain, a pain I can't really describe.  Now I know how patients feel when as an EMT we ask, "describe the pain".  I don't know.  The pain is a constant reminder that I had my boob cut into and hopefully it is healing.  

Until next time...