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….