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….