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…