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...

It’s the little things

There is a good chance that I did indeed have an infection. The pain from the 12th increased two fold in the next two days and the redness got worse. But thankfully the wound has not burst open yet.  The pain started to subside on Friday, but it also still lingers.  

During the week elves Luke and Bekky came to visit with the pups, Moki and Juniper.  Not only did Luke make an amazing dinner but Bekky did some chores around the house.  They were most thankful I think that I could wipe my own ass. Haha.  Also Juniper being a puppy was happy my former boss, Jim, stopped by with his pup Cody, because the old dogs of Moki and Pabst were not up to playing. Cody and Juniper ran circles around us while we talked.  

I was left unsupervised on Friday and that isn’t smart.  I started doing things I probably shouldn’t have been. And paid for it Friday evening. 

My biggest pain currently is the open sores from the blisters due to my allergic reaction to the Tagaderm.  But I also have what I call phantom pains but that isn’t the right name.  I guess it is probably nerve pain. Out of right field, I will all the sudden have a stabbing pain. I will just be sitting here and wham.  And there is still the constant concern of the wound ripping open. 

Next appointment is the 21st for a follow up. If the doc thinks there is still fluid in there, there’s a possibility of another needle going into my boob for fluid extraction, but she really doesn’t want to go that route.  I also have an oncology appointment on December 9th.  

Today was definitely a day of progress. During my shower today, I was able to wash my hair by myself.  I could only use my left arm, but I feel I did a good job.  Also, I decided on trying to wear a normal shirt instead of a button down.  These little things made me feel that I’m definitely getting better.  

Until next time…

 

 

Appointment update 11-12-2024

Yesterday, I probably overdid it.  Or at least that is what I am thinking since my boob area kinda hurts this morning.  This was probably from having to grab the door to close it.   

After working for a few hours in the morning, Amy and I headed over to Durango.  Our first stop was Frida's for the best chips and salsa as well as good food.  I am a big fan of crispy tacos, and they make really good ones.  Amy had taquitos.  Nothing like Mundell's taquitos.  I've been missing those lately.  

After lunch, we went to Maria's bookstore.  Both of us purchasing books.  Then we tried to find me a button up short sleeve shirt (or two).  Winter is upon us I know, but as I'm mostly in the house, the flannels are too much.  No such luck.  Even at the thrift store there were zero.  Maybe I'll just cut off the sleeves at the shoulder and be rednecky.  

Last stop before the doctor was the UPS store to return some of the 20 bras we have purchased in the hopes something would work.  I actually didn't even try these on because I'm currently wearing a XXXL and those were XL.  Yea! I got my double ds.  

We got to the doctor's way too early, but it was ok because Amy had her book, and I was nearing my nap time.  We were the only ones in the waiting room so when the door opened, I knew it had to be for me.  She said she called my name softly since it appeared I was sleeping.  I wasn't and yesterday I made it through with no nap at all.  

After the nurse preliminary stuff (blood pressure, O2, etc.) and the nurse adding in the bandage covering to something I was allergic to, the doctor came in.  She immediately stated that my boobs looked way better than the photo I had sent the nurse navigator.  After looking and poking, she was concerned about some redness near the boob incision site.  From there, she promptly put me on antibiotics for 10 days.  4 times a day.  Now I am one of those people having to set timers to take meds.  

You know when you go to the doctor for a pain and by the time you leave, you are in twice as much pain because they poke and prod you.  Well, that didn't really happen because I was experiencing the upper boob pain prior to going there, but she did talk about drainage that I hope to hell doesn't happen.  This is her concern because of the redness around the incision.  I need you prayers to dig deep that this doesn't happen because I would probably also puke during it.  

But there is some good news in this whole thing.  The preliminary pathology came back.  NOT IN THE LYMPH NODES and the MARGINS WERE GOOD.  

They are still waiting for pathology on the second mass they removed.  The mass looked exactly like the cancerous one, but when initially biopsied was not cancerous.  

Once all the pathology comes back, then it will be sent to Oncology for the oncotype score.  Again, this score will determine the next steps...chemo, chemo/radiation, radiation.  So again another waiting game.  

Until next time...